kaleidoscope eyes

OUR OWN HAPPY ENDING

2010-03-08T16:51:00.001Z

Remember how you used to read in books about how people met and they would gush that from the first moment they met they knew they had met the one? In films, slow music would start and cameras go to soft focus overload. What a load of old romantic nonsense you may say, ever the critic.

But, please believe me when I say I knew there was something special about Lloyd the first time we met. I don't know what it was, his confidence without cockiness maybe, but there was something telling me not to pass up on this one. Corny hey? We got on well and shared many a laugh into the wee hours. I already knew the two other men he was out with, so maybe that helped to break the ice.

A day or two later I found myself ringing his mobile and leaving a cheery message just saying hello. He rang back and we got chatting. He asked if he could take me out the following weekend but I had to decline as I was due to go on holiday to Tunisia with Sophie and my parents for a fortnight. I took down his address and told him I would send him a postcard.

It was his birthday whilst I was on holiday, so I surprised him with a birthday phone call, his workmates cheering in the background.

We again spoke over the phone when I got back off holiday and after me giving him directions to my house, arranged for him to come over the following evening.

He was so different to any men I had gone out with before and when he turned up wearing loud shorts and a Mambo shirt, different certainly sprang to mind!

I didn't have to explain to him about Sophie, one of his mates - who I already knew - had already told him. That didn't bother me, but I did feel slightly moved when he told me he didn't mind, it wasn't a problem for him. It's a big thing for a man to take on someone else's child, but a child such as Sophie takes someone special indeed. In many ways I had resigned myself to being on my own, taking care of Sophie took up so much of my time, would it really be fair to impose that on someone else?

I didn't introduce them to each other straight away, Lloyd and I had a few weeks getting to know each other first.

Sophie was at her special school but was only attending part-time. We had the diagnosis but were in the middle of the M.D.A. ( Multiple Disciplinary Assessment) which would lead to her statement ready for the beginning of the September term.

I remember the moment clearly, Lloyd was sat on the sofa as Sophie came down the stairs. She peered round the door at him, walked into the living room and climbed on Lloyd's knee happy as the proverbial Larry. They love each other, it's as simple as that. Lloyd is the only Daddy Sophie has ever known and the only one she has needed. They are inseperable.

A few months after we met, Sophie was admitted to hospital for a tonsillectomy. Lloyd took the day off work and drove us to the hospital, staying with us the entire day. The hospital staff had been made aware of Sophie's condition and had prepared a side room for her instead of putting her on the main ward. Not knowing any different, the nurses called Lloyd 'daddy'. Neither of us corrected them and from that day forward that is what Lloyd has been.

We talked about having children together early on in our relationship, no subject seemed to go untouched between us, it seemed we had no secrets.

I was fiercely independent, having been on my own with Sophie for 3 and 1/2 years, I was used to doing most things myself. It took me a long time to realise I didn't have to do it all alone anymore, that Lloyd was here to stay.

Don't get me wrong, it hasn't all been plain sailing. We've both had to battle personal demons over the years but we stuck together and made it through.

I had two early miscarriages before I fell pregnant with Travis. It was a turbulent 9 months, the pregnancy itself was fine, but Lloyd and I went through a temporary separation - remember those demons I mentioned earlier? - and although we had reunited by the time Travis was born, we weren't living together.

Lloyd is a wonderful father, he grew up not knowing his father till later in life and will do anything for his kids. We may not have much money to spare, or any savings but there is always hot food on the table, clean clothes for all and the kids don't go without.

If money is short, we explain it to the kids and they accept it. I t may take a while to save for something but we get there in the end.

We try to be as honest as possible with the children and answer all their questions as best we can in a way they understand. I come from an open loving family and want the same for the children. Lloyd's upbringing was somewhat different but he makes a point of giving his children the things and experiences he never had.

Once Lloyd was winning the fight against his inner demons, he decided to make contact with his father. He knew of him by now but had never actually met him.

In some ways they are so much alike yet in other ways he's definately from his mother's side, a nice mixture of both.

Though not in regular contact, when we do meet up with Lloyd's dad and partner, it's like it's always been this way. They adore all of the children and never forget a birthday.

When we had to bring the wedding forward by 6 months due to my dad's failing health and ended up with just 4 weeks to organise it all, they really did come to our aid. They organised the reception venue, the food and the wine. His dad was chauffeur for us in his lovely B.M.W.

11 months after we were married, my father lost his fight against prostate cancer which he had been battling for over 3 years. He may have only been 5ft 3 but he was always a giant in my eyes and it hurt so much to see him waste away like that. When I was little, my dad was always the one to build sandcastles and dig holes on the beach. He never learnt to swim but always stood at the edge of the water when we played in the sea and when Sophie was little he would always sit by the edge of the pool as she happily splashed around. He played football with me and took me to local games on a Saturday afternoon and when I was around 15/16 he'd sneak me into his social club on a saturday night for a crafty 1/2 pint.

Even though Lloyd and my dad had their disagreements in the early days of our relationship they had great respect for each other.

It was hard to watch someone you love fade away, but when dad did go I felt a huge sense of relief. His suffering was no more.

My world fell apart and for the best part of a year Lloyd took over the helm. He even learnt how and when to pay the household bills. I didn't enjoy the thought of letting go of the controls but realised I needed to. The only thing Lloyd didn't do was the ironing, but hey, no-one's perfect!

It was a long haul back to normality - if my life had ever been normal to start with! - but I made it and as a couple all our troubles have made us stronger.

We had our doubters in the beginning and I know today there are family members who don't agree with the choices I've made but that is their loss. Lloyd and I are together, forever.

AIMING HIGH FOR DISABLED CHILDREN

2010-02-18T11:14:00.000Z

This was first launched in 2007, it's aim was to improve service provision across the board for disabled children and their families, enhancing equality and opportunity for them. This programme was first published in May 2008. The core offer of this set out five standards for services for disabled children:

1: Information

2: Transparency

3: Assessmant

4: Participation

5: Feedback

The purpose of this is to improve the access disabled children, young people and their families have to services by ensuring:

1: They are aware of the services available to them in their area.

2: That they understand how said services can be accessed.

3: They need to undergo the minimum possible assessment to qualify for services.

4: Families become actively involved in the planning and delivery of services in their area.

5: They are aware of how to give feedback on their experiences of local services

Aiming High for Disabled Children is all about partnership, with parents, children and young people between statutory agencies and the voluntary sector. The continued success of A.H.D.C. depends on both the development and expansion of partnerships at all levels.

PARENT PARTICIPATION:

This has been designed to develop the active involvement of parents in both service planning and decision making processes. This is done to ensure that parents are active agents in shaping services at a local level.

SHORT BREAKS:

Families with disabled children told the government that their top priority was both regular and reliable breaks from caring. Children and young people also told them that they wanted more things to do and places to go. For this reason, the majority of funding for A.H.D.C. has been allocated to short breaks.

TRANSITION SUPPORT PROGRAMME:

The above programme has been developed to make sure all local areas work on improving practices in all aspects of transition, raising the standards of support received by disabled young people during their transition into adulthood. Disabled young people and their families need improved support from local agencies

PALLIATIVE AND CONTINUING CARE:

Most children who have life limiting conditions or who need palliative care services, will be disabled children. "Better Care, Better Lives" is England's first national strategy for palliative care. It aims to improve the outcomes and experiences for children, young people and their families who live with life-limiting and life threatening conditions.

COMMUNITY EQUIPMENT AND WHEELCHAIRS:

This was identified as one of the areas as particularly important to improving outcomes for disabled children, young people and their families. The provision of appropriate equipment and wheelchairs are seen as vital in order to maximise mobility and communication, making it less physically tiring to care for a disabled child and preventing the deterioration of conditions. Any kind of equipment - from wheelchairs to communication aids - is essential in helping disabled children and young people access school, leisure and other services. Also, to facilitate independent living.

DISABLED CHILDREN'S ACCESS TO CHILDCARE:

Childcare provision is important in improving the outcomes for disabled children and their families. It can facilitate parental employment, reduce family stress and increase a child's social and emotional development. Families with disabled children tend to find it harder to find appropriate childcare. All local authorities have a duty to secure a sufficient supply of childcare in their area, with a particular focus on providing childcare for disabled children.

INDIVIDUAL BUDGETS:

A.H.D.C. included a commitment to pilot individual budgets for disabled children, to increase flexibility and choice in the provision of services. A national pilot programme has been set up to establish whether individual budgets:

1: enable disabled children and their families to have more choice and control over the delivery of their support package.

2: can improve the outcome for some, if not all, disabled children and their families.

BETTER COMMUNICATION - THE S.L.C.N PLAN:

Amongst the most vulnerable and most in need of support to reach their full potential are children with speech, language and communication needs (S.L.C.N.). They are crucial to every child's ability to both access and get the most out of education and life. Following a review of services, the Government published "Better Communication: An Action Plan To Improve Services For Children And Young People With Speech, Language And Communication Needs."

They aim to form a Communication Council and appoint a Communication Champion to provide ongoing support to the delivery of Government initiatives.

EARLY SUPPORT:

This is a national programme to improve the way services for young disabled children in England work together and how they engage with families. It first began in 2002 with a heavy focus on working with parents of disabled children under the age of 5. Also, to improve planning, co-ordination and the delivery of services to disabled children and their families by working with Local Authorities. The Government aim to build on the experience and good practice by using Early Support principles to develop other A.H.D.C programmes.

THE LAMB INQUIRY:

This was set up to investigate ways how parental confidence can be improved in the special educational needs process. Several areas have been identified that require immediate attention:

1: lack of complience with S.E.N. and disability requirements.

2: gaps in the information available to parents.

3: lack of focus on outcomes for disabled pupils and pupils with S.E.N.

4: all policy development needs to consider S.E.N. issues.

The Lamb Inquiry gave recommendations to the Secretary of State following it's S.E.N. and disability information review. They sought significant changes in four areas:

1: Communicate and engage with parents rather than just delivering standard information.

2: In favour of covering S.E.N. and disability in information for all children and parents, reduce the specific S.E.N. requirements.

3: Increase focus on the outcomes for disabled pupils and pupils with S.E.N.

4: Tighten quality assurance and accountability for meeting streamlined information requirements.

TOGETHER FOR DISABLED CHILDREN:

This is the national delivery agent supporting Local Authorities and P.C.T.'S in two elements of the A.H.D.C. programme:

1: transforming short break services for families with disabled children.

2: improving parental engagement in planning and delivering disabled children's services.

It is also a national facilitator for the Disabled Children's Access To Childcare. Supported by their sister organisation Together For Children, they help local areas enhance access to childcare for families with disabled children by using innovative thinking and practical improvements.

Together For Children is also the national delivery agent for Sure Start Children's Centres.

Team,

THE NATIONAL TRANSITION SUPPORT TEAM:

Co-ordinating the work of the Transition Support Programme, it supports delivery at national, regional and local levels. The T.S.P. is a national government programme in supporting disabled young people through their transition into adulthood. By widely spreading their learning across regions and nationally, they will work with local areas to develop practice examples and address areas in need of further work. There is also a National Strategies Transition Programme Consultation Team, which works with N.T.S.T. and their delivery partners to provide regional advisory support to local areas in developing local transition processes for disabled young people. They focus their support on local areas that were identified as in need of high level support by developing local transition support practice up to and beyond both statutory compliance and minimum standards. Below are the Transition Support Consultants and the areas they cover:

1: MICHAEL DISHINGTON- NORTH WEST AND NORTH EAST. michael.dishington@nationalstrategies.co.uk

2: JANE SHEPHERD - YORKSHIRE, HUMBER & EAST MIDLANDS. jane.shepherd@nationalstrategies.co.uk

3: LYN FRITH - WEST MIDLANDS AND SOUTH WEST. lynfrith@nationalstrategies.co.uk

4: KAREN CASTLE - EAST & LONDON NORTH. karen.castle@nationalstrategies.co.uk

5: STEVE COCHRANE - SOUTH EAST & LONDON SOUTH. steve.cochrane@nationalstrategies.co.uk

6: DAVE DICKINSON - SENIOR DIRECTOR, RESPONSIBLE FOR TEAM CO-ORDINATION. david.dickinson@nationalstrategies.co.uk

CHILD HEALTH AND MATERNITY PARTNERSHIPS:

This is a partnership between the Department of Health and the N.H.S. Working with health, social care, education and voluntary sector colleagues, they deliver support of local service improvements across the whole Children And Young People's Agenda. It is also a delivery partner of T.S.P. , which is done through regional co-ordination and detailed bespoke work. This supports the development and delivery of action plans that will improve local processes for transition in all areas.

PERSON CENTRED APPROACHES/PLANNING

2010-02-06T12:19:00.001Z

In using this approach, professionals support the young person to express what they would like to happen in their future, on their terms.

During the formal transition review process, this means putting the young person at the centre of the process. For this to truly happen, young people must be able to have access to information that helps them to understand what happens at transition, how to be able to participate in the process and how to make informed decisions about their future. The young person should not only be invited to meetings but their plans, ambitions and worries should become the focal point.

Person Centred Planning should:

1: Listen and learn about what people want from their lives

2: Help people think about what they want now and in the future.

3: Help family, friends, professionals and services to work together with the young person to make the above happen.

Person Centred Approaches begin with the assumption that families want to make a positive contribution and have the young person's best interests at heart, even if they understand those best interests differently from other people.

Person Centred Approaches seek to develop a better, shared understanding of the young person and their situation, so the resulting plan will describe what is important to the young person, their aspirations and the support they will require. It puts both the young person and their family at the centre of the process and also ensure they have control of the transition process. Using this approach through transition not only benefits the young person and their family but can also help professionals involved have a clear idea of what is needed to help, encourage and support the young person to succeed.

These approaches are based on the assumption that people have futures, aspirations may change and grow with experiences and that the support and services that are agreed now will not necessarily work forever.

There are in fact, several different approaches to person centred planning, and though they are all based on the same principles ( who the person is and the actions to be taken ), they differ in the way in which information is gathered. Be it that the emphasis is on the details of day-to -day life or on the person's dreams or long term plans for the future.

The common planning styles are:

1: Essential Lifestyle Planning

2: P.A.T.H. - Planning Alternative Tomorrows with Hope

3: Maps

4: Personal Futures Planning

Both P.A.T.H. and Maps focus on a desirable outcome or dream and what it would take to move closer to them.

Individual Service Design focuses on the person's past to aid a deeper shared understanding and commitment to the young person.

Essential Lifestyle Planning and Personal Futures Planning both gather information under more specific headings, such as how the young person communicates and local community resources. Someone gathers information for each section and records this so that everyone concerned can use it.

In deciding which style to use, you also need to consider the context and resources available to the young person, whether they have a team to support them, lots of friends and/or neighbours who want to help, or even a circle of support can help decide which planning style would be best to use.

If they don't have a team who knows them well, then a planning style which uses a lot of time getting to know them well would be best to start with, such as Essential Lifestyle Planning or Personal Futures Planning.

If the young person has family and friends and a circle of support who both know and love her then starting with P.A.T.H. or Maps is useful.

Essential Lifestyle Planning is very detailed and focuses on the young person's life now and how best to improve it. It helps people to find out who and what is important to the young person and what would be needed for them to have a good quality of life. As well as identifying what is not working for them in the present, it helps the young person get a life that makes more sense to them, now and tomorrow.

This type of planning will specify the way support is to be provided day-to-day. This is helpful if different members of staff need to work consistently or when the young person and/or their family are notable to give such detailed directions. Essential Lifestyle Planning is an excellent style to get to know someone and begin building a team around them. It also provides a valuable safeguard for when someone moves from one setting to another, as it specifies things that must happen for life to be at least tolerable.

P.A.T.H. is a strongly focused planning style. A group of people who have a basic commitment to the young person are helped to sharpen their sense of what would be a desirable future for said young person and how to plan for them to make progress. Assuming the people present know and care about the young person, they are committed to support them towards their desirable future over the next year. It is not a way of gathering information but a way of planning direct and immediate action. It focuses on the young person's dream, then works back from a possible and positive future, mapping out the actions that will be required along the way. This way of planning requires that the young person can clearly describe their dream or if they do not/are unable to use words to talk, that others present know them well enough to describe the dream for them. A skilled facilitator needs to ensure the dreams are those of the young person and not of the team around them. Some people may change the way they see and understand the young person as the meetings for this type of planning can be powerful and emotional. This helps to clear the way for the young person to make significant changes in their life via very specific actions.

The Maps planning style was first used to help disabled children integrate into mainstream school. It is much more of a picture building style. Maps has a section at the beginning of the whole process for going over the history of the young person. The process allows people express both their hopes and fears for the future in what is called the nightmares section. The action of the plan is help the young person work towards their dream and away from the nightmare.

This type of planning comes midway between P.A.T.H. and Essential Lifestyle Planning. It allows people to dream and includes some 'getting to know you' in the process. It's not as focused or as detailed as these two styles. Moving towards a desirable future, it helps the young person build on the areas of their life that are working well in the present. It does not provide the details of what is required day-to-day but can provide an excellent overview from where any areas of concern can be considered.

The young person is always recognised as being at the centre of good person centred planning which works in partnership with family and friends. The plan should clearly identify the young person's abilities, capacities, what is important to them and what support they will require. Actions will be biased towards inclusion and the learning and reflecting will be ongoing. It creates opportunities for the young person to change their lives and relationships, share power, listen in deeper ways and discover what inclusive communities are really all about.

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TRANSITION

2010-01-27T10:56:00.000Z

Transition and all its planning begins ( or should!) in earnest at the annual review in year 9. It should involve all agencies that may play a major role in the young person's life during their post-school years.

The S.E.N. Code of Practice states the head teacher must invite the following people to the year 9 review:

1: the child's parents, social worker, residential care worker or foster parents where appropriate.

2: a relevant teacher

3: a representative from the L.E.A.

4: Connexions Personal Advisor

5: any person the L.E.A. specifies

7: depending on needs and circumstances, any person the head teacher considers appropriate

8: L.E.A. Educational Psychologist

9: Health Service Representative

10: Other closely involved professionals

For example, at Sophie's review, there was Lloyd and I, the head teacher, her class teacher, Connexions, Community Paediatrician, Adult Social Services, Welfare to Work Team and Sophie. C.A.M.H.S. also submitted a report.

It must, without question involve the Connexions Service. The service is for all 13-19 year olds in England. Priority should be given to those at greatest risk of not being able of making a successful transition to adulthood. The service plays a key role in the transition process of young people with S.E.N. from year 9 onwards. A person with complex learning difficulties/disabilities may need continued and enhanced guidance/support beyond the age of 19. This help should be both agreed and reviewed jointly by Connexions Service and Learning and Skills Council.

Subsequent annual reviews, up until the young person leaves school, must involve the drawing up and subsequent review of the Transition Plan. The plan should draw together information from a range of individuals within and beyond school in order to plan smoothly (so the theory goes) for the young person's transition into adult life. When the plans are first drawn up in year 9, they are not just about post-school arrangements, but also for on-going school provision, under the child's Statement of S.E.N. as overseen by the L.E.A.

Most young people should be ready to play an active role in the transition review process, though for some this may still be through an appropriate adult who will record their views. It is necessary that young people are offered accurate information on all options available to them.

Whilst all this is going on, it's important not to make assumptions about the level of the young person understanding, particularly those with learning, communication and/or sensory difficulties. These children may well need extra help to be able to make their views and wishes known. Efforts should be made to make sure this help is provided wherever needed.

Under the 1989 Children Act, social services must establish Children Service plans which may include provision of further education for children in need. This is likely to include those with significant special needs. They should ensure that a social worker attends the year 9 review and contributes to the formation of the Transition Plan.

Those health professionals who are involved in the management and care of the young person should provide their advice towards the transition plan in writing and, if possible should attend the year 9 review. Advice should be given on services that maybe required and discuss arrangements for the young persons' transfer to adult health services with the young person themselves, their parents and their G.P. They should help ease referrals and transfers of records which maybe necessary. This is subject to informed consent of the young person and parents. Where appropriate they should liaise with the Connexions Service.

As the young person approaches the age of 16, the annual review in year 11 has additional significance. The Connexions Personal Advisor is required to draw up an action plan with the young person and relevant agencies that will build on and take forward the Transition Plan when L.E.A.'s involvement stops. The head teacher and other agencies have to ensure that all relevant information is passed to Connexions to enable the process to happen. The P.A. can then work with the young person to build an assessment profile to lead to identifying the most appropriate and effective actions.

The assessment profile covers 18 factors:

EDUCATION & EMPLOYMENT

Life Skills. Key Skills. Basic Skills. Achievements. Participation.

SOCIAL & BEHAVIOURAL DEVELOPMENT

Aspirations. Identity/Self Image. Attitudes & Motivation. Relationships within Family & Society. Risk of Offending.

FAMILY & ENVIRONMENTAL FACTORS

Capacity of Parents/Carers. Family History. Functioning. Social & Community Factors. Housing. Income.

PERSONAL HEALTH

Physical Health. Emotional Well-being. Substance Use Issues.

It provides summary of areas that are critical to the young persons progress. It will include the level of response likely to be needed from agencies that are/ need to be supporting the young person.

Connexions Service should ensure the transition plan is updated appropriately. They also have a responsibility (Learning and Skills Act 2000) to ensure that the young persons needs have been assessed on leaving school and the provision has been identified. The final review - whenever possible - should be linked with this assessment, enabling a holistic approach to be maintained.

If the provision has already been identified it is good practice for the school's head teacher to invite someone from the provision to the final review meeting.

The transfer of information from school to the continuing education placement or other provision is done by Connexions and they should seek agreement of both the young person and their parents, explaining the importance of the information and desirability of the transfer. Where the young person has a Statement of S.E.N., a copy of this statement together with a copy of the transition plan should be passed to Social Services. Again, this is done by the Connexions Service. Also, copies should given to any post 16 provision the young person will be attending.

Where a decision needs to be made about the placement of the young person in a specialist college, a copy of the transition plan should be sent to the local Learning and Skills Council.

The L.S.C. is responsible for developing, planning, funding and managing all post 16 education (except higher education) and training and Work Based Training for Young Person.

One of the council core aims is that young people with learning difficulties/disabilities have access to high quality learning. The local L.S.C.'s monitor arrangements that are in place in their area to meet the needs of those young people. They work closely with Connexions Services locally - also post 16 providers, schools and L.E.A.'s as necessary - to ensure appropriate support and funding is in place for the provision that is set out in the young persons transition plan.

OUR BEAUTIFUL DAUGHTER

2010-01-12T15:41:00.001Z

Sophie is beautiful. I know I'm her mother and I'm supposed to be biased, but she truly is. With her blond curly hair, blue eyes and freckles she melts the heart of all who meet her.

She's never been a lover of having her photo taken, though pre-autism she would gladly smile for the camera. Nowadays though, if you catch her just right with the camera she lights it up. She's definately not a poser.

I look at her today, at the young lady she is becoming and the horrors of all those early years do seem a distant memory. The mornings of waking up to her having decorated her bedroom walls with the contents of her nappy, the screaming, the head-banging, the not sleeping, the pure helplessness of it all, I know we have made it through to be stronger people.

I am immensely proud of my daughter - as I am all my children - she has overcome some huge hurdles in her life, with more still to come but she continues to amaze and impress us all.

She has made me the woman I am today and for that I am truly thankful. Yes there are still days when I wake up weary eyed and think why me but I wouldn't have such determination to make it through those days if I didn't have a purpose to do so.

I wouldn't have such understanding of those that are different. I would be living in total ignorance of life's cruelty but on the other hand I would never know it's true rewards. I am blessed in a way few people could ever understand.

With Sophie you learn to appreciate the little things in life and with small steps comes great achievements.

Sophie has an infectious laugh. When she comes up to you giggling, smile on her face and flicking her fingers, you can't help but smile along with her and when the smiling and hugging are accompanied by a hug the sun is truly shining.

On the whole, she is a good girl - dare I speak too soon! - and so far the teenage years have not been as horrendous as I envisaged but I do realise we have plenty of years left to bring the worries of adolescence.

In some ways she's still very much a little girl, the love of classic Walt Disney films, colouring books, hama beads, ponies and the beautiful yet childish way she writes her name. There are though, signs that she is no different to any other 14 year old. All the rings and bracelets she won't go anywhere without, her budding interest in choosing her clothes and the way she has begun to take an interest in Joe Jonas every-time she passes Emily's 'Camp Rock' poster.

I'm sure she finds boys intriging as all girls do at that age and I know the boys at her school find her intriging too! As I have said before, she leaves a mark on everyone she meets!

When Sophie was diagnosed back in February 1998 she was mute - apart from the screaming - gave no eye contact, could but would not walk, head-banged, hit herself, threw herself to the floor and slept very little. I had many a night sat in the kitchen at 3am, cigarette in one hand, cup of tea in the other whilst she giggled hysterically to herself in her bedroom.

Nowadays, she attempts to vocalise, walks steadfastly by your side, sleeps well though nearly always awake by 6am and eye contact is a daily occurrence.

We have come a long, long way in the past 12 years and achieved things I didn't always believe were possible. There will always be obstacles to overcome and bridges to cross, I understand that now.

For those of you who are only beginning on your journey, I won't misguide you by saying any of it is easy, but I will say this - never lose heart and never, ever give up.

TEENAGE TANTRUMS AND PERIODS

2010-01-05T16:57:00.000Z

I was always wary of Sophie entering puberty and for years wondered what would be the best way to go about it and how to explain things to her in a way she could understand. Looking back, this is where the idea of a book about Sophie first began to enter my head. I tried looking everywhere I could think of for something aimed specifically at girls with Autism, but to no avail. Most books/stories I came across seemed to be geared more towards boys than girls and higher functioning ones at that. I knew I couldn't be the only parent in this position so what could I do about it?

I was no expert but I knew my daughter. My husband suggested I write what I knew about so my journey began.

As for Sophie, we gave permission for her to have sex education classes at school but how much of this actually sinks in we don't know but we feel anything is better than nothing.

The day she got and wore her first bra was a big step for all of us. She wasn't a little girl anymore, she had started on the road to becoming a young lady. Lloyd I remember was hesitant at the idea of his little girl growing up. Sophie however, seemed to enjoy the whole experience.

I remember my mum recalling one time when she had taken Sophie for a bra fitting at Marks and Spencers. She stood as good as gold whilst the lady measured her and proceeded to admire her new bra in the fitting room mirrors. On the way home mum popped in to see an old family friend. Mum mentioned in conversation that they had been shopping. Sophie then proceeded to flash her new bra at everyone! My mum's friend was used to such behaviours and laughed. Her husband however was a little stunned to say the least!

Laughter truly is the best medicine and over the years I have taken many a spoonful!

Periods was the big one for me. How do we explain it to her, how would she react, would she freak out totally or take it all in her stride? I was worried but as Lloyd said worrying about it wasn't going to do any of us any good, it was simply a bridge we would have to cross when we got to it. So that is what we did, nothing. Trying to explain it all to her could confuse her completely and with her having no spoken language she couldn't really tell us if she understood. We didn't want to scare her either so we decided on waiting and seeing. We would deal with things as they appeared and take it from there.

We had the first sign of a period in January 2007, the day the children were due back at school after Christmas. There I was at 7.30 in the morning driving to the nearest corner shop to buy packets of sanitary pads. Needless to say I have since kept a ready supply in the bathrroom!

Sophie was imply curious. We had no tears, no tantrum, nothing. She had a good look as I washed and and dressed her but seemed completely unfazed. I told her she was a young lady. She looked at me with her beautiful smile and laughed. And that was it. Sophie's first period.

As they became more regular, you could see and sense a change in her moods. The week before her period was due seemed to be the most emotional. You only had to look at her for the tears to start flowing. Oh the joys of being a teenager! Once she started her period things did ease a little but we were still riding the emotional rollercoaster.

I remember how I used to feel at Sophie's age. Life is confusing enough without Sophie's added difficulties. At the same time though, we didn't want to give Sophie the idea that she had carte blanche to do as she pleased. She became an expert on turning on the tears whenever something had to be done that she'd rather do without and although it would tug at my heart - and sometimes still does - she needed to learn that life simply isn't fait and free and easy. We all have to do things we don't want to or don't agree with. In a way we were being cruel to be kind. Travis and Emily aren't allowed to get away with it so why should Sophie just because she's autistic? Giving into her demands may avoid further tantrums and meltdowns but it doesn't serve any true purpose and we would simply be making life hard for Sophie in the future and a very large rod for our own backs.

It was the emergence of physical attacks that led us to our first appointment with our local C.A.M.H.S. (Child and Adolescent Mental Health Services). The one incident that sticks in my mind occurred in April 2008, during the easter holidays. I had taken the children into town to do some shopping, Lloyd was at work. We bumped into my mum on the high street. Sophie wanted to go home with nanny and I said no, not today. Sophie didn't like this so the noises, flapping, stomping and hitting began. I got walloped - luckily it was all directed at me and not the little ones - all the way to Tescos. I decided to get a taxi home as the sooner we got there the better. Luckily, a friend of mine is married to a taxi driver and he just happened to be on the rank at the right time. One of her son's autistic so her husband took all of Sophie's noises in his stride on the drive home. (Thanks Mark, you were a lifesaver that day!). She had calmed a little by the time we got home but was still far from happy. I left her sulking and making noises sat on the bottom of the stairs.

I would just like to make a point here to those who say those with autism are not capable of feeling empathy. Even though she was still making noises in the back of the taxi, she kept reaching out to me as I sat in the front seat, gently trying to stroke my shoulder. She knew what she had done was wrong, this her way of trying to apologise. She knew she had upset me.

Dr Wozencroft (C.A.M.H.S.) suggested we though about putting Sophie on the contraceptive pill. He didn't think behaviour medication would be of any use as the majority of her outbursts were the result of her not being able to get what she wanted but thought the pill could help in lessening her mood swings - therefore her meltdowns - especially around THAT time of the month.

We were a little hesitant, after all she was only 13 but decided to give it a try. Our G.P. prescribed her the pill July 2008. We had a few hiccups in the early days as Sophie's body got used to it but after a while we did begin to see a difference in her. She still got emotional the week before her period but not as bad as before. School were aware of her cycle, so if there came a day when she decided to lock herself in the toilet for 1/2 hour and let the tears flow, they would keep an eye on her but otherwise leave her be. Even now, she can be found calming herself down in the ladies toilet. Some months it becomes part of her daily routine and once she feels calmer she will return to the classroom on her own.

We find that giving her that little bit of space helps. I'm sure if she was able, several days a month she would happily tell us to p*** off but she can't. This is simply her way of coping with the wave of hormones that hits her and millions of other women across the globe every month.

To try and lessen the load on her body, our G.P. recommended that she takes 2-3 pks of pills back to back and then has a break, so she only has 4-6 periods a year as opposed to 12. We found 2pks and then a break serves Sophie best. We tried 3pk but her body's cycle is better suited to 2. We've had no real problem with the pill that Sophie is on, but after about 12 months we started to have breakthrough bleeding so after a word with our G.P. we decided on a stronger dose.

She has become very emotional again, but so far we've had no physical outburst bar one. Again it was little old me on the receiving end. We are very much aware that her body has to get used to the dosage so we are well prepared to weather the storm for a few more months.

If things do not improve we may well have to seek out alternatives but again, that's another bridge for us to cross should we come to it.

G.F.C.F FOODS

2010-01-03T13:09:00.001Z

Below is a list of foods i have collected from manufacturers. please note all information was correct when I wrote this but please remember to check all labelling. thank you. Also, the list is based on foods available in the uk, so check the web for details for other countries. Thank you.

NESTLE

www.nestle.co.uk

coffeemate

dolce gusto

boost juice drink

espresso

alta rica

fine blend

black gold

gold blend original

blend 37

cap colombie

parisien

cappucino to go

suraya to go

nesquik fresh, chocolate and strawberry

nestrappe, mocha and classic latte

nesquik go, chocolate pouch

magic straws

ready to drink, chocolate and strawberry

powder - chocolate only

aero hot chocolate, mint and orange

skinny cow, hot chocolate and mint

aero bubbles, milk chocolate, peppermint and white chocolate

animal bar

after eight, dark chocolate, milk chocolate and mint straws

marc de champagne cocktail truffles

matchmakers

milky bar - buttons and moments

polo - original, spearmint, sugar free and fruits

quality street - assortment

fruit gums

fruit pastilles - original and berry

jelly tots

juicy jellies

randoms

toffee crisp - popcorn

herta parisian ham - original, beechwood and smoked

carnation - evaporated milk (light), carnation light, condensed milk and caramel and chocolate

ideal evaporated milk

tip top - all squirty cream varieties, extra thick cream

build up nutren instant custard

nutren original

nutren milk drinks

nuten soups - tomato, potato and leek, chicken and vegetable

nutrament - all varieties

aeromousse - mint, orange, chocolate, peppermint and double chocolate

disney desserts - chocolate and winnie the pooh

milky bar dessert - fromafe frais and little treats

munch bunch - yogurts, mage drink straws (banana), squashums, drinky and double up fromage frais

heaven desserts - all varieties

ski yogurts - all varieties

ALPRO

www.alprosoya.co.uk

soya milk alternatives - plain, chocolate, vanilla and strawberry

soya yogurt alternatives - strawberry/forest fruits, plain with calcium, peach and mango, red cherry, strawberry, peach, plain yogurt, strawberry, banana and peach, vanilla and raspberry, organic blueberry and organic peach

single cream alternative - chilled single cream and longlife single cream

soya dessert alternatives - vanilla, chocolate, caramel, dark chocolate and alternative to custard

BIRDS EYE

minced beef and onion pies, steak and kidney pies and chicken pies

100% cod fillet fish fingers, value fish finger and omega 3 fish fingers

potato waffles

4 cod cakes

6 beef grillsteaks

king prawns

seaside shapes

beef 1/4 pounders, beef burgers and and 100% beef 1/4 pounders

simply chunky beef burgers

tenessee style bbq ribs

smokey bbq beef 1/4 pounders

lamb and mint kofta kebabs

meatballs

bake2perfection range

crispy chicken

southern fried chicken

hot and spicy chicken

chicken 1/4 pounders

chicken goujons

simply chicken range

all chicken chargrills

chicken fillet burgers

cajun chicken fillet burgers

MERIDIAN

www.meridianfoods.co.uk

creamy mushroom and white wine sauce

creamy sun dried tomato sauce

creamy tomato and herb cooking sauce

green pesto, made with basil and extra virgin olive oil (red pesto too)

green thai sauce

korma sauce

tikka masala sauce

HEINZ

www.heinz.com

beans in tomato sauce

organic beans in tomato sauce

reduced sugar and salt beans

smoky bbq beans

sweet chilli beans

baked beans and pork sausages in tomato sauce

baked beans and mini sausages ( with omega 3)

baked beans and hidden veg

snap pot beans in tomato sauce

h.p. beans

italian beans

mexican beans

beans with bacon

big eat veg and tomato hotpot

taste of home cream rice pudding

taste of home creamy custard

daddies favourite tomato ketchup

chilli ketchup

hot ketchup

curry ketchup

tomato ketchup

organic tomato ketchup

reduced sugar and salt tomato ketchup

ketchup with a twist of garlic

ketchup and a twist of sweet onion

ketchup and twist of chilli

special blend tomato sauce

mustard ( all varieties)

deli mayonnaise sun dried tomato

deli mayonnaise roast garlic

deli mayonnaise caramelised onion

deli mayonnnaise moroccan

light mayonnaise

mayonnaise

mango curry sauce

tomato and chilli sauce

MCCAIN

www.mccain.co.uk

oven chips

crinkle oven chips

rustic oven chips

home fries

crinkle home fires

chunky cut home fries

thin and crispy home fries

crispy french fries

southern fries

curly fries

micro chips

crinkle cut micro chips

gold standard french fries

chippy chips

beer battered chips

simply gorgeous chunky chips

oven wedges

lightly spiced wedges

sea salt and cracked black pepper wedges

summer wedges

cheddar and wholegrain mustard gratin

diced potatoes and leeks, onions and parmesan

spicy potato bravas

rustic roasts

home roasts

smiles

hash browns

chunky croquettes

crispy slices

crispy bites

lattices

potato rosti

simply gorgeous roasting potatoes

sweet potato

baby carrots and green bean

broccoli, red pepper and soya beans

baby carrots, baby corn and red pepper

orange and yellow carrots and light soy sauce

pizza fingers, cheese and tomato

micro toastie, cheese and ham

micro pizza, cheese and tomato

micro pizza, pepperoni

micor pizza, chargrilled chicken

CADBURY'S

www.cadbury.co.uk

bassetts fruit bonbons

bassetts mint favourites

bassetts sweetshop favourites

roses

halls blackcurrant, sugar free cherry, sugar free original and original

dairy milk buttons

curly wurly

bournville cocoa

crunchie nuggets

curly wurly squirlies

roses truffle selection

bassetts mint imperials

fry's turkish delight

halls soothers blackcurrant, cherry, peach and raspberry and strawberry

bassetts spearmint imperials

bassetts soft fruits

trident fresh spearmint, peppermint and cool lemon

trident sweet kicks chocolate mint

trebor soft mints peppermint

fudge

crunchie

trebor sugar free gum, spearmint and peppermint

chomp

jelly babies

milk tray

bassetts murray mints

flake

fry's chocolate cream, orange cream and peppermint cream

trebor xtra strong peppermint, spearmint, cool peppermint and cool spearmint

flake dark

bassetts pear drops and sherbet lemons

dairy milk

dairy milk shots

rose luxury selection

dairy milk variety box

trident splash strawberry and lime, raspberry and peach, vanilla and mint and apple and apricot

trebor softmints spearmint

bournville

bassetts cherry drops

bassetts eveton mints

trident soft peppermint, tropical twist, strawberry smoothie and spearmint

creme egg twisted

milk chocolate coated raisins

milk chocolate coated peanuts

dairy milk caramel egg

creme egg minis small easter egg (egg only)

buttons small easter egg (egg only)

halls xtra strong

bassetts aniseed imperials

koko milk chocolate truffles

SAINSBURYS

4pk white rolls

multiseeded loaf

2pk rosemary foccacia

savoury cheese snacks

5pk caramel shortcake slices

jam doughnuts (x2)

doubletake (x2)

shortcake fingers

sultana and pecan cookies

porridge

vanilla custard

... more available instore

K.P.

crawfords ginger nuts

crawfords morning coffee

mcvities ginger nuts

mcvities cake toasting waffles

TESCO

www.tesco.com

fusilli

spaghetti

penne

blueberry cereal bars

syrup sponge pudding

pancake mix

minestrone soup

chicken casserole

victoria sponge mix

vegetable curry and rice

3 bean chilli

alpro vanilla dessert (chocolate and caramel)

alpro dairy free custard

kallo yeast free vegetable cubes

dales farm gluten free flour

provamel rice and calcium drink

orgran vegetable rice pasta spirals

nature's path sunrise organic careal

orgran wf/gf spaghetti in tomato sauce

kallo organic puffed rice cereal

eat natural breakfast rice

doves farm organic chocolate stars

organic brown rice noodles

tesco free from chocolate sponge pudding

linusit gold golden linseed

doves farm speciality rice flour

doves farm gf white bread flour

free and easy gf vegetable gravy mix

doves farm gf white self raising flour

alora luxury gf muesli

trufree potato and vegetable quick snack

free and easy df cheese sauce mix

nature's path crispy rice cereal

organic rice drink

envirokidz organic gorilla munch cereal

village bakery organic pumpkin seed and cranberry bars

orgran falafel mix

granovita organic brown sauce

kelkin gf porridge

eat natural breakfast buckwheat seeds and mango

florentino parmazano

cremo vita organic soya based whipping cream

doves farm organic gf brown rice penne pasta

bob the builder organic gf pasta shapes

orgran wf all purpose crumbs

doves farm organic gf maize pipe rigate

mrs crumbles pastry mix

doves farm organic gf cereal flake

doves farm xanthan gum

mayola plain

sweet freedom natural sweetener

prewetts organic ground flaxseed

doves farm organic gf maize and ricefus pasta

passage to india thai basil and chili stir fry

it's a free world korma sauce

passage to india butter chicken sauce

dietary white bread mix

it's a free world moroccan tagine, thai curry and tikka masala suace

sanchi tamari soy sauce

tesco organic spaghetti

heinz organic cream of tomato soup

tesco organic fusilli

seeds of change organic penne pasta and organic spinach trotolle

tesco organic wholewheat lasagne

seeds of change semi wholewheat tartigliani

tesco organic lasagne

seeds of change organic spaghetti

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WELCOME TO THE WELLS'

2009-12-24T12:08:00.000Z

I'd like to tell you a little about our family, five people living in a semi-detached house with 10 (yes 10!) cats and 6 goldfish. (We came across the fish by accident after we rescued two from the cats but that's another story!).

Firstly, is Lloyd, my husband. We've been together for nearly 11 years and married for almost 3. Now a landscape gardener by trade he actually qualified as a hairdresser when he first left school.

He likes to read Terry Pratchett and is an avid F1 fan. He's quite laid back whereas I can't leave things laying around or jobs to be done.

He is also a fabulous amateur cook. His mother's a qualified chef so he grew up learning how to cook things 'properly'. He is a perfectionist with food, when he is cooking I stay well out of the way - I'm not a confident cook and he's a bit of a Gordon Ramsay! - though both Travis and Emily seem to have inherited their dad's love of cooking and very often can be found helping dad out in the kitchen.

He's a big man and can look quite intimidating but is only to those who cross him or his family. When it comes to his children he can be a big pussycat - he admits Emily has him wrapped round her little finger. I could tell you stories to support this but again that's for another time. - but they soon know if they have pushed their luck too far.

Our relationship has not been all plain sailing by any means, over the years we've had to work damn hard at keeping our family together. Though even now there may be days when we annoy the hell out of each other, we know there's nowhere else we'd rather be.

Then comes me. A single mum at the age of 24, Lloyd came into my life a few months short of Sophie's 4th birthday. She bonded with him instantly and that was a real clincher for me.

Being tiny - I'm 5ft tall - I've learnt over the years to develop a loud voice, even more so since Sophie's diagnosis. I like to be organised - just ask Lloyd about my lists - and things to be reasonably tidy. I'm no domestic goddess but I do my best!

Lloyd would say I have a touch of OCD and he's quite probably right.

I am a very passionate person and will stand my ground for what I believe in. I try not to be led by my emotions but this one doesn't always seem to pan out. I am also a very loyal friend.

I have loved to read from an early age - Emily seems to follow me with her love of books - and History was one of my favourite subjects. ( Travis seeems to have inherited love of this one!) I am a bit of a movie buff, but nowadays I tend to wait for DVD releases. It's cheaper than trooping everyone along to the cinema!

As a youngster I used love watching the football with my dad, but nowadays I tend to stick to watching Wimbledon, something I have always enjoyed and will continue to do so for many years.

Sophie turned 14 this summer. She is a big girl for her age but she will always be one of my babies.

As a toddler , though I tried putting her in lovely little dresses, she was definately more at home in tracksuit trousers and trainers.

A lifelong Disney fan, she wiles away many hours upstairs in her bedroom watching all the classic Disney films - Snow White, Sleeping Beauty, Lion King etc. She has amassed an admirable collection of Dvd's over the years. (We used to have them all on video but tended to go through them at a rate of knots!)

She adores anything to do with horses - she had lessons when she was younger - and loves pigs. Not sure where this fascination came from but over the past few years we have collected various shaped soft toys of them.

As a teenager, she likes a lot of the typical things - perfume, jewellery (especially rings and bangles), having her hair done and knowing how she wants her hair done. (Plaits are the style of the moment.)

She used to have a voracious appetite, literally eating everything in sight but she is becoming more selective about the amount she eats now. Another teenage trait perhaps?

She loves to colour and doodle and spends hours with her varied collection of pens, pencils and colouring books.

Next is Travis, my gorgeous little man. He has a great eye for ladies and has always seemed popular with the girls wherever he goes.

He has a love of natural history - rocks, minerals, reptiles, bugs etc - and loves anything to do with Ancient Egypt and dinosaurs. On e of his school reports said he would make a natural scientist.

He's addicted to his games consoles and will literally spend all day shooting the bad guys in Call of Duty or collecting gold coins as Sonic the Hedgehog. He can stick a game in and be off before I've had the chance to read the game description on the box! He has a huge imagination, is sociable and has never been shy in introducing himself when we are out and about.

He's a bright child, who generally enjoys school. I feel his love of gaming has helped with his reading, as he has to read his mission objectives, and he's a lot more confident with his pronounciation. Writing is a stumbling block, he has real difficulty putting pen to paper, but this is now under review at school.

As I said, he's a sociable child but has few close friends. He takes things close to heart and can become stressed and frustrated if he can't see a way out . He's not the most organised of people, in some ways the opposite to Emily, I am always reminding him to check his school bag, do his homework, tidy his bed etc. We now have a chart on the kitchen wall to try help him keep things in check everyday.

He loves to talk and if it's about something he's into - gaming, pokemon etc - he can keep going for hours. His brain is so full of stuff his mouth can't keep up and you have difficulty understanding what he's saying. We are always having to ask him to slow down.

Food-wise Travis is the complete opposite to the girls. Whereas they will happily try most foods, Travis is terribly picky with foods and fruit terrifies him. His diet consists mostly of chicken nuggets, fish fingers, supa noodles and weetabix, which is the only cereal he will have with milk. He will only drink if it's flavoured with milkshake powder. H edoesn't eat vegetables or potatoes - unless they are chips from McDonalds - but will have tomato sauce with everything given half the chance.

He is fiercely protective of his sisters and doesn't think twice about standing up to kids twice his size if they poke fun at Sophie.

He maybe tyke at times and drive us mad with non-stop chatter but he's our little man and we love him.

Emily is everything there is that's girly. She adores the colour pink and will wear it in every shade possible.

She loves cuddly toys of every shape and size and possesses dozens of Barbie and Bratz dolls. She knows all the words to all the songs in all 3 High School Musical films, she's an avid fan of Hannah Montana and has a huge crush on Joe Jonas. All that is Jonas is gold in or house. Disney is one of her favourite channels and she loves a happy ending.

She has formed an opinion on everything since the age of 2 - a classic "I'm not wearing that!" moment, but again, another story - she know what she wants and is not afraid to get it.

She loves makeup and can often be caught admiring herself in a mirror. She's not overly vain but likes to look good.

She is very affectionate and loves nothing more than a good cuddle.

She has beautiful, soft, long, blond hair and knows which styles she likes and which ones she doesn't. Even tying it up for school can be a battle.

Emily loves order. She likes to put things down safe in the knowledge that they will still be there at a later date. If for some reason they are not, then we may all suffer the consequences! The slightest thing out of place can set her off with literally dramatic results! A future actress perhaps?

She's petite but feisty and a very loyal friend. She's popular with he classmates and though she can be quiet she's not necessarily shy.

She say she wants to be a teacher when she grows up, but I am sure that whatever she decides she will succeed.

She is very academically bright and more at ease with reading and writing than her brother though they both seem to have an affinity with maths.

Some of the things she does do remind us so much of Sophie, the way she eats her food, the food she likes, her love of order. Sophie had the MMR, both Travis and Emily had single vaccines, but it does make you wonder. . . . .

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You are not alone, there are others out there.

2009-12-22T11:52:00.001Z

In that first instance, when I was sat in the doctor's office and given the news that Sophie had autism, my first reaction was one of shock, coupled with a small amount of relief. Relief at the fact that we now knew what was the root cause of Sophie's problems. Shock because I hadn't got a clue what to do next. I was completely in the dark.

I felt so completely alone. All the women I'd met at ante-natal classes had toddlers running around and talking. Mines was now completely mute and sat trapped in her own world. I had no idea how to reach her, I was living with a total stranger. Why was my child so different? Why did the fates see fit to do this to me? Had I been bad in a former life and this was my punishment?

You really do feel as if you are the only one this has happened to, that you are totally and utterly alone. This isn't true of course, but it takes time to become brave enough to look for others.

Even in the comfort of my own home, I felt so alone. Going out with Sophie was always filled with trepidation as you never knew what was going to happen.

One of my first steps was to join a local support group of children with special needs. Most of the parents there had children with AD/HD but it was still comforting to talk to parents whose children weren't 'normal'. You slowly begin to feel slightly less alone. You can laugh and cry together and they know exactly where you are coming from.

The next step was Sophie starting special school. To me this was a very big deal. My parents had been foster parents for over 30 years and had experienced some of the horror stories from these schools of old. I had fears of my daughter being institutionalised. For moral support I took my mother with me when I went to visit our local special school. I was very apprehensive at what these school were actually like.

I was pleasantly surprised. The headmaster was a very jovial chap who had the knack of making everyone feel at ease. They had a nursery/assessment unit which could take children from the age of 2, but they couldn't enter the school full-time until they had a Statement of Special Educational Needs.

Back then with Sophie it was literally all or nothing. She either sat mute in a corner rocking or ran round like a mini tornado laughing hysterically at a joke only she could hear. The staff at the school never batted an eyelid, they assured me they had seen it all before, that Sophie was merely exhibiting all the behaviours of a severely autistic toddler. Strange as it may seem, that piece of news did make me feel a little better. In the world of autism, my daughter didn't stick out like a sore thumb.

Willoughby school doesn't just take kids with autism, it educates children with all kinds of disabilities, from the physically disabled to those with severe behaviour difficulties, but they did - and still do - run an excellent Autism programme.

When your child goes to a special school, you don't just drop them off at the school gates and so you don't get to meet other parents in the normal way. Slowly but surely , through school functions, Christmas plays etc, I did begin to forge friendships with some of the parents.

No two children are ever exactly alike, even those who live with the same disabilities. They may exhibit familiar behaviours from time to time but they were all affected in different ways. But, as parents of these children we all shared a common bond, we understand what life was like and we could share stories and experiences without being judged. Our lives were not easy and we all despaired at the 'system' being so unfair and appointments taking so long. We lamented at the constant battle to get our children the things they so desperately needed to make their lives just that little bit easier. We have all, in those dark days , wished it would all just go away, but our children have allowed us to find strength and determination within ourselves that otherwise may well have lain dormant forever.

Through Sophie having autism, I have forged great friendships with people I may well have never met otherwise.

The internet has also been a lifesaver. Through social networking sites and sites for autism i have met families in very similar positions to mine. Autism affects boys more so than girls and being in contact with parents whose daughters are affected by this condition lets me know that I truly am not alone. There is someone somewhere experiencing life in very similar vein to me and who know exactly what I am going through. This truly is a comforting thought to know, that there is always someone at the end of the line to talk to.

Even at the mainstream school primary Travis and Emily attend, I have been involved with a parent support group. I remember how it was for me in the very beginning and want to let other parents know that it's not all doom and gloom.

Life may never be easy and straightforward, but you can meet some extraordinary people along the way.

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INFORMATION ON ADOLESCENCE AND ADULTHOOD

2009-12-19T14:25:00.000Z

The following information I have gleamed from various publications in search of what's best as Sophie grows up. There seems to be little out there to help us support our children as teenagers and upwards. I hope you find some of it useful and it can give you some idea of what life may hold. I stated above each piece of information where it was gleamed from.

Some of the information may be repeated from various publications.

THE AUTISTIC SPECTRUM - A HANDBOOK.

During adolescence - may become more interested in social activities, try extremely hard to make friends and be like other teenagers. They misinterpret social rules and fail to understand how others view their behaviour as strange/odd. They may experience constant feeling of failure and fear and emotions of anger. They may even suffer from a form of depression at some point in their lives and despair at not being able to make friends. Many situations may still seem frightening and extremely confusing.

* heightened awareness of differences with peer group

* unable to from sucessful relationships

* loneliness

* difficulty with their sexuality

* constant feelings of failure

* pressure to take part in social activities

It's important to view sudden changes in behaviour, sleep patterns, anger and withdrawal as possible signs of depressive illness.

AUTISM - PREPARING FOR ADULTHOOD

Kanner himself described variability in outcome and stressed importance of well-developed communication skills and intellectual ability for good prognosis. He deemed those who remained non-verbal had the least favourable outcome with many remaining highly dependent as they grew older - living with parents, in sheltered communities, in state institutions or, in a few cases, psychiatric hospitals.

Deterioration in behaviours shown in the following ways:

* destructiveness

* aggression

* self-injury

* obsessionality

* overactivity

the above changes tended to occur around early adolescence, with the outcome tending to less favourable for girls than boys.

Sex education can be overlooked for teenagers with autism and they are likely to learn little or nothing from peer group. Because of their deficiencies in social understanding, sex education should be more important for them than other children. Instructional methods for 'normal' children can be worse than useless for those with autism. Some mothers have recounted tales of their children loudly recounting contents of sex lessons in public!

Melane & Lettick (1983) reccomend useful, straight forward and practical programme of sex education, which can be used effectively with both moderately and severely impaired. They include the following:

* identifcation of body parts

* dealing with menstruation and masturbation

* aspects of personal hygiene

* appropriate social behaviours

* how to relate to strangers and familiar adults

* dressing appropriately

* using public lavatories

There is a potentially useful package developed by Ann Croft and Nottingham Severe Learning Disability Sex Education Project (1985). THere is also Sexual And Mental Handicap by Hilary Dixon (1990). Topics include:

* recognition and awareness of body parts

* menstruation and the menopause

* masturbation

* sexual relationships, including how to say no.

* sexual health, using contraceptives and avoiding risk of AIDS and other infections

The manuals are set firmly within the context of developing other social skills:

* improving self-esteem

* making decisions

* understanding social skills

* making freinds

* dealing with emotional feelings

It is also necessary to help them develop awareness of areas that the non-autistic usually have relatively little difficulty. Why certain behaviours - following people or remaining clothes in public - may offend or frighten others. What people will think if they do and what consequences may follow. All these need to be clear and explicit. It is necessary that rules continue to reinforced, to be made explicit whenever the situation warrants it. Expect that mistakes will occur from time to time, don't despair, such occasions can be used ad practical teaching sessions.

As well as making rules and regulations, it's important to increase alternative leisure activities as much as possible, especially the opportunity for meeting other people:

* clubs for people with disabilities

* mainstream activities suited to individuals own special skills or interests

The focus needs to be on the whole life of the individual, not on specific "undesirable" behaviours, which could be indicators of deprivation and under stimulation.

THE HANDBOOK OF AUTISM. (2ND EDITION).

The time of growing up is a worry for all parents, but for those with children with special needs, these concerns are greatly increased. There is an extra dimension of concern:

"What will happen when we are gone or too old to look after him/her?"

UNDERSTANDING AUTISM FOR DUMMIES (2006).

Low functioning autistic kids may have fewer opportunities after school than those who are higher functioning. Living independently starts with being competent in regular living skills:

* keep living area clean

* getting along with others

* managing time, both free and structured

* socialising with others, professionally and personally

* budgeting money

* preparing and eating nutritious meals

* self-advocacy and disclosing

It's never too early to start preparing your child for as much interdependent living as possible:

* cleanliness. young children can help keep bedroom and living areas of your home clean. high-functioning children can learn skills to keep areas clean after they develop an understanding of what unclean is when compared to cleanliness.

* getting along with others

* time management

* budgeting money

* nutrition

* self-advocacy

If your child isn't likely to live as interdependently as you hoped, you can still work on basic life skills such as cleanliness and socialization to make life easier at home.

Establishing friendships can be difficult for those on the autistic spectrum but not impossible. If they are willing to go out and meet people, you should be willing to do whatever it takes. If they are low-functioning and have trouble getting out and meeting people, you can still support them in trying to socially interact with those they see on a regular basis.

* find activity based events to attend. find groups they may want to join based on any special interests. try local AS groups as a way to find information on social groups for people with autism

* help them to be a good friend. help them to understand nuances of communication that other people take for granted

* set up a hygiene schedule. setting up a visual or word based schedule for hygiene activities is helpful

* "appropriate touching" teaching them to substitute handshaking for hugging will serve later on in life

Some low-functioning children on autistic spectrum may not be able to understand dating or romantic relationships, but you must realise friendships can still occur but a friend doesn't have to be a boyfriend or girlfriend.

81% of adults aged 16 - 40 on autistic spectrum demonstrate some signs of sexual interest. A third engage in masturbation in public areas, probably due to a lack of improper education on the subject. This can be especially prevalent in those who are low-functioning. people on this end of the spectrum have the least understanding of socially acceptable behaviour. People on the spectrum often don't get the normal information - or they get misinformation - about sex from non-autistic peers.

It is up to the caregivers to educate dependent on matters of sex. It will allow them to direct sexual urges more appropriately.

If low-functioning, it can be even more beneficial to offer sex education. If not provided with proper education, they will satisfy in some way which may be less than desirable. Sex education is an important topic for those on the lower end of the spectrum.

There are 10 central concepts to cover in sex education ( Peter Gerhardt, President of Organisation for Autism Research):

* public vs. private behaviour

* good touch vs. bad touch

* proper name for body parts

* slang names for body parts

* personal boundaries

* masturbation

* social skills & relationship building

* avoiding danger and abuse prevention

* dating skills

* personal responsibilities and values

People with autism may need more direct instruction when it comes to redirecting masturbation. It is one of the more challenging behaviours people with autism can present.

* interrupt behaviour as early in chain as possible.

* remind them about appropriate parameters of time and place

* redirect person to:

an activity requiring use of both hands
an activity requiring preferred levels of attention, focus or physical activity
appropriate place for activity - "alone time" in the person's bedroom. avoid redirection to places other than their bedroom.
Like all parents and guardians you have to plan for the likelihood that your children will outlive you. Get started and adjust details of your plan as time passes, you will be sorry if you wait too long. If you don't plan ahead, your child could end up on a minimal income or be disqualified from government sources altogether. The decisions you need to make are:
* your child's future care
* supervision
* quality of life
* financial planning
Nadine Vogel, founder of Met Desk, a division of Met Life Insurance that helps parents with special needs planning tells of the most common financial mistakes to make:
* not drafting documents properly - professionals without knowledge of special needs law may make mistakes that could harm your child's future such as drafting a will or life insurance policy correctly.
* not co-ordinating your financial life. making your child the beneficiary of investments could affect their benefit entitlement. keep entitlements to government services in mind.
* not having enough information about the laws that could have an impact on your child. parents don't want to find out the hard way that they are unable to see their adult child's medical results without their child's permission. there is a legal procedure to go through to obtain legal guardianship.
You need to think about several issues including your child's earning abilities and your financial situation when making decisions about their future.
* what's my child's prognosis to be able to support himself and manage his financial affairs? what's his earning potential?
* what government benefits does he receive now and what is he eligible to receive?
* how am i doing financially?
* what is the best living environment for my child?
Answering these questions should help you to determine what will be in your will, whether your child will use government assistance and who will take care of them when you are no longer able to.
The best course of action is to be conservative right now and plan for the worst case scenario.
Parents need to be mindful of eligibility requirements when financial planning s a person with autism can lose this by inheriting too much.
You need to know what you have to provide for your child later. When listing all your assets, don't forget the following:
* equity in your home and any other real estate
* investments such as stocks and bonds.
* pensions and other retirement schemes
* art and antiques
* life insurance policies with a cash value
Considering living arrangements and legal guardianship can be a difficult prospect but you need to think about who will make the best decisions for her. This is a key decision and needs to be made immediately as it can greatly affect your child's future. Legal guardianship means you have to consider the following:
* who will provide daily care and supervision?
* who will supervise docotr's visits, diet, medicatio and therapy?
* what experience do future care providers have in caring for a person with autism?
* who is qualified to attend the I.E.P. meeting?
Planning is a team project, no individual can do it all alone.
Recommendations for professionals:
* contact a local disabilities group to find someone who is familiar with special needs issues.
* call your local bar association and/or other trade group
* get referrals from other local parents.
* ask your insurance company or other financial services if they have services specifically targeted for special needs kids.
Prospective planning professionals:
* experience in working with special needs families
* expertise. the laws can change frequently so you need someone who's caught up.
* communication skills. should be able to explain all in layman's terms respectfully and not condescending.
* personal sensitivity and tact. someone who understands and can deal with the fact that you are dealing with decisions that are fraught with emotional issues
* accessibility
You will need a will, it's as simple as that.
Laws generally mandate that all assets go to your spouse. If not, it goes to all surviving children in equal shares. Creating a will is the only way to allocate your assets in the way that you decide. Make the best decision you can with the information you have now.
A letter of intent is a self-written statement that sets out your wishes for your child's care for a future caregiver. The following should be included:
* the most important part is information on your child's physical and mental condition.
* medical history. also, any medications, physicians and food allergies.
* your hopes/aspirations for your child's future.
* beliefs about issues such as dating and marriage, religion, living situation, work and academic plans for your child.
* likes and dislikes of your child. also, interests, hopes and dreams, hobbies and social habits.
All this can help manage your child's daily routine and activities after you have gone.
It's a hard decision to make, but you will need to decide who you'll want to look after your child when you have gone, especially if they are incapable of making their own decisions when they reach 18 or 21. If you are still alive at this age, you may have to have your self declared their legal guardian. Evaluate your child and make the decision that will be in their best interests. Full legal guardianship may be for the best if your child needs help with typical activities such as dressing, bathing, toileting, preparing meals etc.
NATIONAL AUTISTIC SOCIETY - INFORMATION SHEET.
Autistic children are more vulnerable than their non-autistic peers because change, literal interpretation and trying to understand social communication can cause them high levels of anxiety, which is why explaining to them about puberty, sex and relationships is so important. It is important however, to realise that these children often need a longer period of time to adjust and understand any changes in their lives.
Before you begin any formal explanations you might like to speak to your child's school about what they will cover in P.H.S.E. classes. By doing this, you will help to ensure consistency and fluency between school and home. Also, children on the autistic spectrum may need explanations of things such as:
* why we must wash everyday
* what friendship and being a friend means.
* how our behaviour may be viewed by others.
Collaborating with school may mean your child understands these concepts well. It is also suggested that you start by demonstrating life cycles to your child. These provide a basic context of development and ageing, in which puberty has a role. You may like to produce a basic body outline and label all the various body parts. You could also highlight the various changes that will occur:
* increases in height
* growth of pubic hair
You may need to be careful that your child does not develop an unrealistic view of what their body or other people's bodies should look like. It is common for a teenager's self-confidence to be in turmoil but those on the autistic spectrum can find this a particular difficulty.
As well as physical changes, your child needs to understand such developments as menstruation etc. You may need to reassure your child that these are normal processes within the body, as they could be particularly confused and upset.
You could use a body outline and indicate what part of the body produces, for example tears, sweat, urine and semen. This could give your child a greater and clearer understanding of how their whole body works.
When explaining menstruation to your daughter, you will need to supply her with the appropriate sanitary products. You may also need to show her how they need to be placed and pointing out any features that may help her remember how to place them correctly.
Teenage years can be difficult for any child, but for a child on the autistic spectrum who dislikes change and finds their own emotions confusing, these years can be particularly stressful. If you can ensure that your child understands and is prepared for these changes hopefully anxiety can be kept to a minimum.
During puberty, better attention needs to be paid to personal hygiene. Your autistic child will need to be made aware of these changes and pointed to the right direction, for example, using deoderant, showering and washing hair more frequently. Not only will you have to explain the actual processes but the reasons behind them too. Peole with autistic spectrum disorders can have difficulty understanding the social rules behind such activities.
As your child approaches puberty, they may already have an established routine for washing themselves and their clothes etc, even if they only put them into the laundry basket. You could use a tick list to ensure they complete each stage of their morning routine.
As your child progresses through puberty, you may feel it is now appropriate to talk to them about sexual relationships. You may also need to discuss sexual health, smear tests, protection against pregnancy and sexually transmitted infections.
Your teenager, though they have an autistic spectrum disorder, is still a teenager. Therefore, there is a high probability they will be interested in this part of their lives to a greater or lesser degree.
As well as physical changes, they may also require help to develop their social interaction skills in order to sustain a meaningful relationship. It must be remembered that autistic spectrum disorders are social communication difficulties which affects their ability to understand socially appropriate behaviour. Autistic individuals are not necessarily guided/constrained by social rules which direct those who do not have the condition.
A behaviour may have a very significant and specific meaning for a person with autism which isn't "just being rude" or sexually motivated.
People with A.S.D. have difficulties seeing a situation from another person's point of view, meaning that they are unable to consider another person's feelings or they may think the person concerned feels the same way they do. Individuals with A.S.D. may need to be steered and supported by those around them not to act on their impulses.

LITERARY HELP

2009-12-16T13:57:00.000Z

These are books that I have read over the years. Some I have read cover to cover, others I have picked at for help in certain areas. Some are a few years old and may no longer be in print, but with the aid of some internet sites you may be able to find a copy if you wish. Happy reading!!

ASPERGER SYNDROME & SENSORY ISSUES. Practical Solutions for Making Sense of the World.

by:

Brenda Smith Myles

Katherine Tapscott Cook

Nancy E. Miller

Louann Rinner

Lisa A. Robbins

LIVING WITH ASPERGER SYNDROME

by:

Dr. Joan Gomez

USING INTENSIVE INTERACTION & SENSORY INTEGRATION - A HANDBOOK FOR THOSE WHO SUPPORT PEOPLE WITH SEVERE AUTISTIC SPECTRUM DISORDER.

by:

Phoebe Caldwell

with

Jane Horwood

A USER GUIDE TO THE GF/CF DIET FOR AUTISM, ASPERGER'S AND AD/HD.

by:

Luke Jackson

THE SIEGE. A FAMILY'S JOURNEY INTO THE WORLD OF AN AUTISTIC CHILD.

by:

Clara Claiborne Park

EXITING NIRVANA. A DAUGHTER'S LIFE WITH AUTISM.

by:

Clara Claiborne Park

TALKING TEENAGERS. INFORMATION & INSPIRATION FOR PARENTS OF TEENAGERS WITH AUTISM OR ASPERGER'S SYNDROME

by:

Ann Boushey

UNDERSTANDING AUTISM FOR DUMMIES.

by:

Stephen M. Shore

Linda G. Rastelli

FREAKS, GEEKS & ASPERGER SYNDROME.

by:

Luke Jackson

THE OUT-OF-SYNC CHILD. RECOGNISING & COPING WITH SENSORY INTEGRATION DYSFUNCTION.

by:

Carol Stock Kranowitz

SENSORY INTEGRATION & THE CHILD.

by:

Jean Ayres

THE AUTISTIC SPECTRUM - A HANDBOOK.

by:

The National Autistic Society

TAKING ACTION! YOUR CHILD'S RIGHT TO SPECIAL EDUCATION.

by:

John Wright

Richard Poynter

MULTICOLOURED MAYHEM. PARENTING THE MANY SHADES OF ADOLESCENTS & CHILDREN WITH AUTISM, ASPERGER SYNDROME & AD/HD.

by:

Jacqui Jackson

THE HANDBOOK OF AUTISM. 2ND EDITION.

by:

M. Aarons

T. Giffens

AUTISM. PREPARING FOR ADULTHOOD.

by:

P. Hawlin

AUTISM. A SOCIAL SKILLS APPROACH FOR CHILDREN & ADOLESCENTS.

by:

M. Aarons

T. Giffens

SURVIVAL STRATEGIES FOR PEOPLE ON THE AUTISM SPECTRUM.

by:

Marc Fleisher

THE SENSORY-SENSITIVE CHILD. PRACTICAL SOLUTIONS FOR OUT OF BOUNDS BEHAVIOUR.

by:

Dr. Karen A. Smith

Dr. Karen R. Gauze

SENSORY PERCEPTUAL ISSUES IN AUTISM & ASPERGER SYNDROME. DIFFERENT SENSORY EXPERIENCES - DIFFERENT PERCEPTUAL WORLDS.

by:

Olga Bogdashina

LIFE IN THE FAST LANE

2009-06-26T15:13:00.000+01:00

DRIVING ON THE MOTORWAY

AT 90 MILES AN HOUR

APPLY THE BRAKES

THEY ONLY SCREAM

THEN I REALISE THE SCREAMS ARE MINE

I'M LOCKED INSIDE THIS CAR

ON THE FAST LANE

OTHER DRIVERS LOOK

AS THEY PASS ME BY

" WHY DOES SHE DRIVE THIS WAY?"

LOTS OF DIFFERENT JUNCTIONS

DON'T KNOW WHICH ONE TO TAKE

I HAVE NO CHOICE

THIS CAR DRIVES ITSELF

I AM ONLY A PASSENGER

THE LIGHTS THEY BLIND ME

SIGNPOSTS ONLY CONFUSE

I TRY TO FOLLOW TRAFFIC

THEY DRIVE ON

WHILE I'M TAKEN ON A SLIP ROAD

I RIDE PARALLEL TO YOU

THE SAME DIRECTION

BUT A DIFFERENT ROUTE

I WILL REACH MY DESTINATION

MY JOURNEY JUST TAKES A LITTLE LONGER

I WILL MAKE IT . . . . .

MY DAUGHTER'S EYES

2009-06-25T14:04:00.001+01:00

THERE IS A WAR BEHIND MY DAUGHTER'S EYES
A WAR I CANNOT SEE
BUT I WATCH HER BATTLE DAILY
AND I FEEL IT CONSTANTLY

I WISH I COULD GET IN THERE
AND FIGHT THIS BLOODY WAR
BUT I AM ON THE OUTSIDE
AND MY DAUGHTER'S LEFT WORN AND TORN

HER EARS CAN HEAR THE NOISES
THAT NO-ONE ELSE CAN HEAR
HER EYES SEE SO MANY BRIGHT LIGHTS
AND HER MIND MUST FIGHT THE FEAR

THE SHOCK THAT COMES FROM A GENTLE TOUCH
YET DEEP MASSAGE BRINGS RELIEF
HER LAUGHTER SOARS MY HEART
YET TRUE CONNECTION IS SO BRIEF

MY DAUGHTER IS A PRISONER
AND AUTISM IS THE JAIL
IT KEEPS HER LOCKED INSIDE HERSELF
YET I SWEAR I WILL NEVER FAIL
TO REACH MY DAUGHTER DAY BY DAY
TO SHOW HER SHE NEEDN'T RUN
TO HELP HER LIVE ON THE OUTSIDE
NOT WITH FEAR AND FRUSTRATION BUT WITH US, WITH LOVE AND FUN.

INSIDE OUT

2009-06-25T14:02:00.000+01:00

TRAPPED ON THE INSIDE LOOKING OUT
ALL I CAN DO IS SCREAM AND SHOUT
BUT NO-ONE SEEMS TO HEAR ME
I BANG MY FISTS UPON THE WALLS
CURL UP TIGHTLY INTO A BALL
ALL I WANT IS SOMEONE'S HELP TO FREE ME

I SEE ALL THE GAMES THEY PLAY
BUT THERE SEEMS NOTHING I CAN SAY
HELPS OTHER CHILDREN UNDERSTAND ME
I WANT TO BE THEIR FREIND
SEE GAMES THROUGH UNTIL THE END
BUT MIND AND BODY SEEM TO ALWAYS WORK AGAINST ME

I DIDN'T ASK TO BE THIS WAY
BUT I NEVER HAD A SAY
ON THE WAY NATURE DECIDED TO CREATE ME
I'M BUILT DIFFERENTLY TO THEM
THOUGH EVERY NOW AND THEN
I GET GLIMPSES OF HOW LIFE COULD BE

I HAVE MY FAMILY
AND I KNOW THAT THEY LOVE ME
AND I KNOW THAT LIFE WITH ME CAN BRING SURPRISES
BUT THEY WILL NEVER GIVE UP
EVEN WHEN THE GOING GETS TOUGH
AND EACH DAY BRINGS CRISIS AFTER CRISIS

AUTISM WIRES YOUR BRAIN
TO A VERY DIFFERENT FRAME
YOU SEE THE WORLD THROUGH KALEIDOSCOPE EYES
BUT IF YOU'RE JUST LIKE ME
YOU'LL HAVE A FAMILY
THAT SEE YOU NOT AS A BURDEN BUT FIRST PRIZE

AUTISM, A PARENT'S PERSPECTIVE.

2009-06-10T11:19:00.000+01:00

The following piece of work I first wrote 10 years ago when I did talks at the local college to students on childcare courses about living with a child with a disability. Sophie had not been long diagnosed and some things were very raw as you get from the wording. Not all of it applies anymore but I thought it would be a good idea to include this piece in my work. Enjoy!

Sophie was born on 3rd August 1995. She was 6 days overdue and weighed in at 7lbs 3oz. Labour started naturally but ended in an emergency ceasarean due to complications. There were no problems with her after the birth and she was feeding by the time she was an hour old.

We were discharged from the hospital on Sunday 6th August. Sophie was slightly jaundiced but feeding well.

She was transferred from breast to bottle at 3 and half weeks due to being very hungry and not settling, making life hard for mum. By the time she was 10 weeks old, she was downing 10oz bottles every 3 hours and so was quickly moved onto solids.

She gained weight evenly over her first year, losing some slightly when in hospital for a kidney infection which turned out to be a flash reflux for which she was still on regular medication until the beginning of this year (1999).

She had very good gross motor skills and would sit with help at 4 months and unaided at 6 months. She rolled over at 5 and half months and shuffled around on the floor like a miniature commando until the age of 8 and half months when she discovered how to pull herself up right by holding onto the furniture. At the age of 9 months she was crawling forwards at full speed, and the cat was in fear of his life!

Sophie took her first steps at the age of 11 and half months and from then on, she proceeded to run everywhere.

Once the first few words came, her vocabulary came thick and fast. At the age of 14 months she could say such words as 'milk', 'juice', 'night-night', 'bye', 'Tinker' (the name of one of our cats), 'see you', 'mummy', 'ga-ga' (her name for my dad), 'nanny', 'mimmy' (her word for dummy), and 'ta'.

She had such phrases as:

"Where going?"

"What doing?"

"Where is it?"

"Here it is!"

Sophie was able to name all objects in picture books at 16 months and was beginning to ask to go "wee wee". She was a very sociable girl and very inquisitive. She had a favourite dolly that went with her everywhere.

Christmas 1996 was when temper tantrums started. At first it was just put down to the terrible twos starting 6 months early, but there were also slight but subtle differences. She became insistent on watching videos and knew exactly which ones she wanted. She would become very agitated at the slightest thing that she didn't agree with or didn't want. She seemed content to be on her own.

It was around March 1997 whilst we were on holiday that changes were really becoming evident. She didn't always respond to what you said and sometimes did exactly the opposite. You could shout at the top of your voice and get no response. It was also noted that her speech was slowing down. She wasn't saying or talking as much as she used to but what she was still saying at that point was still very clear, words such as:

"No"

"Please"

"Rain"

"Bye"

"Mimmy"

"Peas" (her favourite food).

I tried continuing with potty training but soon gave it up as a very bad idea. At first we thought the problem may have been her ears, which would easily account for regression of her speech and the fact that she seemed not to take any notice when you spoke to her. It also could explain some of the behavioural problems which had now progressed to her banging herself on the head at frequent intervals.

The health visitors gave her another hearing test soon after we returned from holiday which she failed. She was then referred to the E.N.T clinic at Edith Cavell Hospital. The audiologists there decided that there were certain frequencies that she couldn't hear very well but not enough for it to have affected her speech in the way that it had done. It was then she was sent back to her paediatrician whom she was already registered with due to her reflux.

It was also around this time that she began to see the Speech Therapist and had her first appointment with Dr. Brown, the clinical medical officer.

The first set of tests were run in November 1997. She had to undergo a series of blood and urinology tests. An E.E.G took place at Addenbrookes in Cambridge and in January 1998 she underwent a C.A.T. scan at Peterborough Hospital.

It was this particular procedure that really brought things crashing down. On admission to the day ward, we had to wait nearly 3/4 of an hour to be seen by a doctor who waited until Sophie had fallen asleep before deciding to examine her. I was told the sedative she would need for the scancould take upto 2 hours to take full effect, but it wasn't given to Sophie until 45 minutes before she was due to have the scan. Needless to say she wasn't asleep, wouldn't have any of it and proceeded to scream the place down as I stormed down the corridor swearing at anyone who dared come near me! The poor nurse who asked me if I would like a cup of tea got to hear language that would make a sailor blush!

I was given no forewarning of the fact that she may have to stay overnight if she took too long to come round from the sedative and so sarcastically asked the nurse how I was expected to last the night with 2 nappies and half a cup of Ribena.

What should have been a fully-informed and calm 2 hour procedure was an 8 hour long nightmare. With no transport of my own, it cost £18 in taxi fares to get home. I have yet to peel myself off the ceiling and dread the fact that se may need similar tests done on the future.

We were recalled to the hospital on February 9th, 1998, to hear the results of all the tests. All had proved to be negative or normal. Dr. Woolf had come to the conclusion that Sophie was Autistic. There is no way of testing for Autism, it is merely a case of eliminating all other possibilities and observation of the child themselves. Dr. Woolf could give me no explanation as to why, he even professed not to be an expert on the condition but through his contact with Sophie and ongoing observations with various other professionals he felt it was the only logical conclusion to come to.

All I left the hospital with that day was a diagnosis. No telephone numbers, no information leaflets, nothing. It was like being knocked for six, sorry your daughter will be disabled for the rest of her life but there's not a lot we can do about it.

My world came tumbling down. My once outgoing somewhat precocious (what little girl isn't?) daughter had turned into a mute introverted little stranger. I didn't know who she was anymore and at one point wasn't sure if I wanted to. She came close to rejection through no fault of her own. Deep down I knew I loved her but I wasn't sure if I liked her. Some days I still feel this. We may not have had a particularly bad day, but sometimes it's just the fact that she is there and she has what she has. I wanted my daughter to talk to me, to laugh with me and to shout at me when she couldn't get her own way, but now I was faced with the very real possibility that she may never talk again. Even now, a year on they still can't tell me if her speech will return. They can't even tell me why she lost it in the first place.

Autism is such a cruel and unfair condition for anyone to have or to live with. Day-to-day living can become such an ordeal, the things they eat, the places we go, the routes we must take to go there, what video goes on at what time, when we have our bath, how we clean our teeth, it's like living on constant egg shells.

Sophie knows she isn't stupid, her development may have regressed for a while, but she is slowly catching up. The most frustrating thing for her as is for me, is the inability for her to truly convey what it is she wants to communicate. She knows exactly what she wants, but to get that message across in a way that others understand is for her, so very hard. It must feel as if she is constantly banging herself against a brick wall. She can see people on the outside, but can't get out herself and can't make us hear her either.

She does have periods of being fascinated with certain things, but does not have what i would call obsessions as some people with Autism do. At one time she had a fascination with spoons, any kind would do, just as long as she'd got hold of one she was happy. Very often we would come away from a coffee shop with teaspoons in the bottom of her pushchair!

Sophie is also a very tactile child. If we go out anywhere, she likes to touch stone walls and feel the textures of different kinds of hedges. Fences and railings also seem to fascinate her. Another favourite is sand and gravel. She will sit for hours on a beach or in a sandpit just feeling the sand runnnig through her fingers.

At our old house, in the back garden she would take her spade and dig in the exact same bit of border every day. No matter how much I tried to prise her away, it was no good. I'm just glad there was nothing growing in it at the time!

She started at Willoughby School in Bourne in June 1998 and the changes in Sophie have been amazing. Eye contact is almost constant now, and although she is still not verbal, she is most definitely vocal and is happy to chatter away in a language that only she seems to understand.

She is now also an affectionate child, though still only on her terms. She will come to you if she wants a cuddle, but woe betide anyone who tries to do it the other way round. She will sometimes kiss, but gives you hr forehead, not her lips.

Her fascination at the moment lies with puzzles. Give her any kind of inset puzzle and she can complete it quicker that they do on "Krypton Factor". You can mix the pieces up, turn them upside down, but still she knows exactly where each piece goes. Maybe this will be her forte in life, who knows? Testing children's games for Harrod's is not a bad career prospect!

Her every day fine motor skills are still sometimes a little unsure of themselves. She is given a spoon with every meal and will sometimes fetch one herself but 9 times out of 10 she ends up eating with her fingers, be it sausage and chips or spaghetti bolognese. Yes, my daughter is able to eat almost anything with her fingers, it may take her some time to eat a yogurt but she will get there in the end. Despite this, she still likes to be independent and is not very responsive if you try to help her. In fact, she can become quite agitated if you do try to help. She is best left alone, even if the kitchen table does look like a bomb fallout afterwards.

She sometimes has problems with her long-term gross motor skills. Walking around in closed spaces such as at home or school are ok, but for her to walk any distance can be frustrating. She gets very excited, and often walks on tip-toe. Also, her right foot can be very badly turned in and she seems to lean forward rather than stand upright so her balance is not the best. Holding onto her is not just to stop her from running off, you have to hold her to stop her falling flat on her face. Her endurance and tolerance for walking is getting better but it would be a brave soul who would venture anywhere without her chair.

The paediatrician checked out her leg muscles and there is no problem in that area, it may be she is slightly Dyspraxic which would all be part and parcel of her Autism. Another sign of this is that when she falls over or bumps herself, she doesn't always feel it. She always to come home with one mark or another.

She is no longer under the Speech Therapist at the clinic, but sees one once a week at school. Within the class itself, the teachers use basic signs with all the children. The aim for Sophie is to build upon her comprehension of language with an outlook to teaching her Makaton. After all, she has to understand what the word is for her to have any comprehension of language. It's no good teaching her to sign if she doesn't know what it is she is signing for. They use words along with the signs as well, it is not a completely silent language. Not for all children anyway.

Bringing up children is never an easy task, but a child with a disability does add extra pressure. You do feel as if you are the only one who's been through all the anguish and despair, and you feel terribly guilty for wishing that they would just go away. I know I did and I sometimes still do.

I am a single parent, Sophie has had no contact with her natural father since she was 5 weeks old. He has no idea what she looks like, let alone the fact that she has so much to cope with, besides her Autism. I try my best, sometimes I cope, others I don't. The nights do get lonely and can be the worst. You feel absolutely shattered and there's no-one their to put their arms around you, make you a cup of tea. If she has a night when she doesn't sleep at all it makes it all the more worse. You are the one who has to continuously get up to her, to try and soothe her back to sleep when what you really feel like doing is throttling her.

I am lucky though, I have very supportive parents who on more than one occasion have taken Sophie under their wing for days at a time so I can try and get my head together. My siblings if anything are tolerant of Sophie. They put up with her antics and talk to her as they do their own children, but when it comes down to it they really have no concept of what it is like to live with her 24 hours a day, 7 days a week.

They gave up saying things to me a long time ago, but I know from my parents that they do not like the fact that she spends so much time at my parent's house. My mother has given up trying to explain it to them, all they see is a single parent palming her daughter off so she can have fun. What they don't see is me in hysterics on the phone in the early hours of the morning because I simply cannot cope with the idea of having Sophie at home a minute longer. They have no idea of the sheer frustration of it all and the depths that you yourself can plummet to.

I also have a great group of friends who are there if I need them, some I have known since ante natal classes. I t is good to keep in touch with other parents, Sophie is not banished socially and my friends children accept Sophie for who she is . They are now beginning to realise that she doesn't talk, but as far as they are concerned that's just Sophie. They play with her, they talk to her. They may not always get a response but they don't seem to mind.

Sophie needs to mix with mainstream children. It gives her a more relaxed atmosphere than she has at school, to see how other children play and the opportunity for her to try and become part of what they do. It also helps other children realise that not everyone is the same and that despite their differences children like Sophie have a right to be there. Yes sometimes children do ask questions, but they are honest questions, they see nothing wrong in what they want to know, it is the parents that install the fear of those that are different.

Admittedly I don't take Sophie to some of the places I used to. Some people are very intolerant. It is alright for their children to behave like miniature animals but when another child does something slightly different to everyone else they look at you with complete contempt. Yes I could explain that my daughter has a disability and cannot help the way she acts but I shouldn't have to. People should accept people for what they are not disregard them for what they are not.

Other places are completely the opposite. They greet Sophie with a smile and ask her how she is. Okay so she doesn't always register what they say to her but it is the tone of their voice that is the important thing, it is a nice tone and Sophie does register this. It makes her feel good and she will remember that. They know she won't answer their questions but that isn't the point, they see the child not the disability.

I want Sophie to grow up having a happy childhood, knowing that people loved her and cared about her for who she is not what she is. I want her to be as independent as possible and be able to live the life she wants to, not one that has been mapped out for her. I want her to be understood by people, for her to accepted not ridiculed.

Autistic people have achieved many things. One woman had written several best selling books, a man I heard of travels round the world on his own. His language is slightly stilted but to do something like that must give him a tremendous sense of acheivement. I want Sophie to be able to feel like that, that whatever she does she feels like she has achieved something.

UPDATE, OCTOBER 2000 . . .

Sophie was 5 in August and has now been at school for 2 and half years and full time since since last October. Everyone comments on how she has changed.

She is a happy child, despite her problems, a lot more contented within herself - though we do still have bad days - and very affectionate with those she knows and loves.

She has been potty trained during the day since February - with occasional accidents - and her aptitude for walking is slowly improving.

She still doesn't talk, but has for the past year been using P.E.C.S. She does understand some Makaton but doesn't use it.

Her love of water continues and in swimming lessons at school is slowly learning to doggy paddle without armbands. Her aptitude for jigsaw puzzles continues and can sometimes finish quicker then me.

She recognises her cousins and all of them have developed their own individual relationship with her. With each one she likes to do different things. With Jason she likes to tickle his ears though we've never been able to discover why!!

Her visual memory is remarkable, both with puzzles and classification.

In September of this year she moved into class 1 and is now beginning to follow the National Curriculum.

She reiceved her full Statement of Special Educational Needs in October last year.

She has come a long way since diagnosis and the dark heady days of despair. Life will never be simple, I accept that - some days better than others - and I also accept the fact that returning to those dark days is an easy trap to return to.

At the end of the day I have my daughter. She is fit, she is healthy, she has a good appetite and loves exercise and fresh air. She is affectionate, she does love me, she understands a lot more than people give her credit for. She can be awkward, she can be temperamental - comes from her mother - she can be downright naughty and she can get away with it.

Oh yes, one more thing. My daughter is not disabled. She lives with a disability.

UPDATE, SEPTEMBER 2002 . . .

A lot has happened in the past 18 months but Sophie continues to face life head on.

We moved house in March of last year which she seemed to take completely in her stride. She left for school from one house and came home to another, but her toys were in her room and the climbing frame and slide were in the back garden - she was happy. Her sleep pattern was up and down for a few days but she soon settled down.

Four weeks after we moved house, Sophie's younger brother was born. Now preparing any child for the birth of another isn't always easy but with Sophie even more so. I talked to her about the baby growing in Mummy's tummy as you would any child, I brought her books to show her, just simple picture books like you'd show a toddler. Words and sentences still hold no real meaning for her. She knew something was afoot and as I got bigger she became aware of my belly, sometimes stroking it and on the odd occasion giving it a quick kiss.

I had prepared myself for trouble, after all she'd been the centre of my world for nearly 6 years and suddenly this little stranger appears. What child wouldn't feel just the smallest tinge of jealousy? She was wonderful, covering him with his blankets whilst he lay in his pram - although sometimes she would cover him completely - giving him his dummy when he cried and tried - with very close supervision - to feed him.

Now he's mobile and vocal her views have changed slightly, he's noisy, irritating and stands way too close. She is still very protective of her personal space. They do have their disagreements - she does give him the odd shove when she thinks she can get away with it - as all siblings do but on the whole the total experience has been easier than we expected.

She continues to make progress at school. They did try her on Key Stage 1 but decided it was too much and now she follows the Essentials Curriculum. Group activities are something she's not always keen on joining in, but they don't push it. Sometimes she sits on the sidelines and others she will just take herself away to a quiet corner.

She is still dry during the day, with occasional accidents. She still wears nappies at night, which we now receive from the health clinic.

Her general health has improved greatly since a tonsillectomy in July 1999. She has a voracious appetite and is above average height for her age, she's almost as tall as her 13 year old cousin.

She did have a brief reunion with her paediatrician earlier on in the year following sporadic vomiting and diarrhoea. It was decided no further action was needed - I did breathe a sigh of relief after my earlier experiences - though we thought she may have a gastric reflux, but because she was not in any pain and was obviously fit and healthy. The peadiatrician did offer us a referral to Royal Free Hospital in London - followers of Dr. Andrew Wakefield will know where I mean - but because she wasn't in any pain we declined the offer. We didn't want to place her under any undue stress.

She does see a community dentist every few months at the local health clinic. Sophie is not keen on the medical profession - I think it comes from all the tests and poking and prodding she's endured in the past - you may get her in the clinic but not always to open her mouth. There have been times when she wouldn't even get out of the car but we continue to persevere.

She still has no speech, the one thing I wished for her so desperately for her as I believe this is her major block with the outside world. But life goes on and I have to expect that my daughter will more than likely never talk again. They continue at school to make progress with P.E.C.S. though at home I must confess it's rarely used at home as she is easily able to make herself understood to those around her.

Her overall mobility is improving, especially her balance but crowds and strange places can overpower her. We do still have her chair but she is simply becoming too heavy for someone to push it.

She has also found a new talent, horse riding. She loves it passionately. She has no fear and a perfect seat (so I'm told). She is led on a lead rein but will hold her own reins when the mood takes her. She trots around the school with ease and the decision has been made to introduce cantering. The school she attends are brilliant and they are determined that one day Sophie will ride on her own unaided. At the end of the school holidays she took part in the Eastern Region Special Olympics held at Wittering and attended by different R.D.A. from across the region. She came 5th in two events, Dressage and Working Pony Trail and received her rosettes from the Mayor of Peterborough.

I was so proud of her that day, I had a lump in my throat and a tear in my eye. When they all applauded her she had the biggest on her face you could imagine. She knew they were clapping for her and although she wasn't sure why she knew it must be good. As far as I was concerned it could've been an Olympic Gold. To some it was a small hill but for Sophie it was the equivalent of Mount Everest. She had tried so hard and got her reward.

I hope life as she grows offers her other such rewards. As long as she tries and gets what is just rewards for the effort she outs in then she has a right to be proud and we will all be proud alongside her.

Severe Behavioural Problems - The Road to Early Adolesence

2009-06-08T13:52:00.000+01:00

I used to dread the summer holidays when Sophie was younger, the total loss of routine from school used to drive her crazy and by week 3 I'd been climbing the walls pulling my hair out.

In the early days Lloyd was sympathetic to my frustrations but never fully understood the implications until the summer of 2003 when he was off ill from work with a shoulder injury.

He admitted to me on the way back from one of many meetings we'd had at school that he finally understood just how much hard work Sophie could be.

In May 2003, we had a meeting with Sophie's headmaster and the Educational Psychologist to discuss her behaviour. Sophie was heading towards 8 years of age and despite being the youngest in her class she was by far the biggest. She was regularly throwing things across the classroom - more often than not her tech-scan 32 was the object of choice - and kicking out indiscriminately.

Our concern was for the other children she shared a classroom with. The teachers, to a certain degree were trained and paid to deal with behaviours but other children were innocent bystanders. Willoughby School had already worked wonders with her, if they now decided it was all too much where would she go? We didn't want her 'sent away' Lloyd was the most outspoken about this, he was determined that her place was at home with us.

Adam the headmaster assured us they were more then happy to keep her. Teachers were currently undergoing training for a 'new restraint system' two person approach and Adam said they would implement it with Sophie once training had finished. When this did happen we had to sign a from giving permission because it was physical to a degree but it was also what was needed with Sophie as she was growing in both age and size.

An 'Issues and Actions' sheet, which was drawn up before the meeting, contained amongst others the following statement:

"It is wondered whether Sophie's behaviour may be related to hormonal change or seasonal influence. This matter may require ongoing monitoring."

She was coming upto 8 years of age and growing at speed, maybe it was only logical - a Mr Spock moment - that physiologically she was altering as well.

She seemed to find life hard between the October half term and Chritsmas and this went on for a few years which is why seasonal influence was mentioned.

Amongst other ideas the Educational Psychologist suggested the following:

* A fully structured timetable

* Continue to ignore 'low level' behaviours.

* Use of time out opportunities for more major events.

* Stimulus Control - removal of stimuli that are problematic. eg: objects that can be thrown.

* A real emphasis on reward - praise etc for desired activities.

* Consider appropriateness of aspects of statement and support levels for focus on behaviour management.

In her 2003/4 school report, her class teacher wrote the following:

"Sophie has had some difficulties with her behaviour this year and has found it hard to be a part of the class at times. She finds it difficult to understand that she may sometimes need to do what others ask her to do rather than what she would choose."

Adam wrote that she:

" Requires significant support at times."

When her Annual Review came round in 2004, we again applied for funding for Sophie to have her own 1:1 assistant. We had been trying for 2 years and been turned down by the L.E.A. I think it helped having school write the following to County Council:

Due to Sophie's communication difficulties, the last two years have seen an increase in frustration and stubborness resulting in frequent violent outbursts with Sophie kicking pupils and staff as well as hitting and pushing. This is usually at times when Sophie is unable to communicate her needs or wishes during group or class work.

She still exhibits violent, frustration-led outbursts frequently, which make additional demands on class and head teacher time. Moreover, Sophie is also growing in size and weight, placing her considerably above her peers and this is becoming an issue in managing her behaviour.

The following was finally put into her Final Statement of Special Educational Needs:

" In order to assist the school in addressing Sophie's needs additional funding will be provided and equates to 10 hours per week. This funding is provided to assist in implementing programmes designed by the school's S.E.N.C.O. in liaison with other agencies, to meet the objectives on the statement and detailed in the Individual Educational Plan."

The first ancillary help Sophie had was a lady called Lydia. She was a lovely lady, softly spoken and seemed mild mannered but whatever she did within the classroom worked and Sophie responded well to her. School had obviously forewarned her of Sophie's behaviours because she wasn't adverse to coming into school armed with a pair of football shin pads for protection!

Unfortunately, Lydia didn't stay long within school so the search for a new auxillary began.

Salvation came in the form of Yvonne. A wonderful woman who had worked within the school before. Lloyd and I went to meet her before she officially started the job and we liked her immediately. There wasn't much that seemed to phase her and she has a lovely sense of humour.

Sophie will be 14 this year and Yvonne continues to work with her to this day. Sophie loves her, and when Yvonne had time off work for knee surgery, school took Sophie and a few other children round to see her and have a cup of tea. We thought Sophie may be unsettled at school as Yvonne was off for quite some time but nothing untoward happened and when Yvonne did come back it was as if she'd never been away.

It was during all the upheaval with Sophie's behaviour that I realised I was no longer able to physically restrain her. Nearing 9 years of age and she was physically stronger than me.

The turining point took place at my mum and dad's house. She'd spent some time there and I had gone to fetch her home. Travis and Emily came with me.

Sophie however, had other ideas. She wasn't going anywhere. Now over the years mum and dad have always been sympathetic to Sophie's plight but this was the first time they'd seen a meltdown in action. Temper tantrums they could deal with but this was completely different.

Dad tried to talk to her but he almost got sent flying across the room. I got in between them and let Sophie kick and punch me instead.

After a while, I had to give up. Travis and Emily were becoming upset and I simply could not move her. I took the younger ones home and got Lloyd to go round and fetch her. I sat down on the stairs and cried. It wasn't her meltdown that upset me, over the years I've got used to them and the bruises. It was the fact I couldn't control her anymore and I has two other children and they were still a little young to understand why Sophie did the things she did.

Needless to say as soon as she saw Daddy she got up off the floor and into the car.

It would be nearly another 3 years before puberty truly began and there were times we felt we were going round in circles but we managed to slowly make it through to the other side. When we got there of course is a whole other story.

NEW ARRIVALS - SOPHIE'S REACTION TO HER SIBLINGS

2009-06-04T16:34:00.000+01:00

I always knew I wanted more children. It was a thought I had before Sophie's diagnosis and it didn't change afterwards, I just knew it wouldn't be easy.

When Sophie was little I said I would love another child before I was 30. I felt 30 would be a nice age, I didn't want to be an 'older mum'.

I met Lloyd in the spring of 1999. Sophie was coming upto 4 years of age and still spending a lot of time with my mum and dad. You could see his love for children a mile away, the way he spoke of his younger cousins - one with cerebral palsy - and his cousin Heidi's 3 children. He was an only childre, brought up by his mum grandparent's and knew just how lonely it could be.

We spoke of our mutual wanting of children early on in the relationship. He adored Sophie and has been known as Daddy since the summer of 1999.

I did fall pregnant early on in the relationship but sadly had a miscarriage. The same thing happened a few months later. We were disheartened but didn't give up.

I discovered i was pregnant again in August 2000. We were both overjoyed.

We took a week's holiday to Spain in September of that year with some of Lloyd's extended family. Sophie was an absolute angel and interacted well with Heidi's 3 children.

We went through a rough patch when we got back and separated for a short while. Though we re-united Lloyd did not move back in straight away. The two of us still needed a little space. Lloyd had a lot of inner demons to deal with. I was more than prepared to help him but not ready to live with him until he was better.

Throughout the pregnancy I used to talk to Sophie about the baby growing in Mummy's tummy. I had no real way of knowing if she understood but she seemed happy enough with all that was going on. Often she would gently pat my stomach and give it a kiss. I did buy a basic 'Mummy's having a baby' book and would look at it with her but again had no way of knowing how much of it she understood. I even went out and bought Sophie a beautiful dol's pram complete with baby doll so she wouldn't feel left out.

A month before the baby was due, I moved into a 3 bedroomed house. The council agreed to move me before the baby was born due to Sophie's autism and worries over her and the baby sharing a room.

Family and friends helped me move, Lloyd was there as well as Sophie's regular babysitter Teri. Sophie's school bus picked her up from our old house and was due to drop her off at the new one. I wanted to get Sophie's new bedroom as organised as possible, putting furniture in a similar layout to that of our old house. She handled the whole thing brilliantly, with few problems.

Four weeks less one day after we moved in i went into hospital to have an elective caesarean. Sophie's birth ended in an emergency section and my consultant at the time adivsed me that if I had any more kids I was to opt for a planned caesarean to prevent the same thing happened again.

Travis John was born on Wednesday 18 April 2001. He weighed 7lb 10oz. He had a head of hair and his dad was in theatre with me and was the first to hold him.

In all honesty, as the midwife held him up over the screen was:

"I could do that all over again." the bond was instant.

Two days later, my mum bought Sophie into visit. She was curious, peering at him in his plastic cot and even giving him a kiss before she left.

The arrival of Travis once were all home really didn't seem to phase her. We had prepared ourselves for the worst but it never happened.

I used to lay Travis in his pram in the dining room window where he could lay in sunlight to aid his jaundice.

If he cried out when he lost his dummy, Sophie would stroll over and put it back in, and if he kicked his blanket off she would attempt to cover him up but would pull up the blankets a bit too far and they would end up over his head! It was never done maliciously though she really was trying to 'help'.

When he was in his highchair at mealtimes, she also liked to feed him, but we had to watch that she didn't ram the spoon in too hard.

The only time she wasn't very keen on him was when he became mobile and would crawl onto her knee as she sat playing on the floor. She made loud negative noises as if to say 'get him off me!' but very rarely pushed him. That only happened if he really annoyed her! In the end though she became used to being climbed on and Travis got used to the odd push!

If anything, having another child in the house was god for Sophie. She slowly learnt to realise that someone would always invade her personal space whether she liked it or not. She became more accepting of other people around her.

Travis was coming up to 14 months when we discovered Emily was on the way. Again, Sophie seemed to take it all in her stride. By now she had become used to Travis another baby would just be more of the same. We told her much the same as we did before.

Emily Amber Rose was born at 12.18pm on Friday 21 February 2003, weighing 7lb 3oz, exactly the same as her big sister did when she was born.

I was relieved when Emily was born, I found looking after Sophie and a small toddler hard work. I was very tired and very anaemic. I also had pre-natal depression but couldn't take anything because of the pregnancy.

This is one of the reasons I decided to bottle feed Emily, so that I was able to start taking medication as soon as possible. I also found it easier to get back into a routine.

Both Sophie and Travis were fascinated by the new arrival. Sophie had seen it all before but was still intrigued. Travis, at 22 months couldn't decide if he wanted to kiss her or poke her!

The arrival of a 3rd child on our 3 bedroomed house meant that we faced one new obstacle - Sophie having to share her bedroom with one of her siblings.

When Emily was around 4 months old we moved her from the swinging crib in our room into the cot in the nursery and moved Travis into the bottom bunk bed in Sophie's room. She was curious but didn't really play up, she kept peering over from the top to see if he was still there!

The idea was, in the long run was to move Emily in with her sister when she was old enough and give Travis the small room for his own. This happened when he was around 4-5 years old. 'Spiderman 2' was all the rage and he chose red and blue for the walls with Spiderman stick-a-rouns, curtains and bedspread. He had a high sleeper with a desk and wardrobe underneath, which he thought was great.

Sophie and Emily were treated to new bedspreads as well.

All in all the girls get on really well together, it's a nice size room but there isn't an awful lot of space. Girls seem to have a real knack of collecting 'stuff'. Sophie has seen Emily play with her toys and tries them out herself. There have been a few occasions when I've gone upstairs and seen Sophie rocking Emily's 'Baby Born' doll to sleep, complete with dummy in it's mouth.! She also likes to brush 'Bratz' dolls hair and will sit there for some time with hairbrush in hand. She also took a liking to Emily's Nintendo DS, so much so that we ended up buying her one of her own. She loves it.

Growing up with Sophie as their big sister has given Travis and Emily a tolerance for those that are 'different' that they might not otherwise had. Even at school they have come into contact with children who are 'special' and they don't bat an eyelid. They ask honest questions, they want to learn, not to poke fun at them. As I have always said, children are born with ope, honest minds, it's certain adults that instill the fear of those that are different.

'Borrowed' information on S.P.D.

2009-06-01T13:29:00.001+01:00

THE FOLLOWING INFORMATION I DOWNLOADED AND COPIED FROM THE "SENSORY PROCESSING DISORDER" WEBSITE, UNDER HEAVY WORK ACTIVITIES.

Heavy work activities (i.e., proprioceptive input) are used for children with sensory processing difficulties to help increase attention, decrease defensiveness, and modulate arousal.

Proprioceptive input is the performance of tasks that involves heavy resistance and input to the muscles and joints, and is essential in helping our bodies assimilate and process both movement (vestibular) and touch (tactile) information.

Heavy work activities include:

Whole body actions involving pushing, pulling, lifting, playing, and moving

Oral actions such as chewing, sucking, and blowing

Use of hands for squeezing, pinching, or "fidgeting"
This resistive input obtained through heavy work activities is generally organizing and can improve attention, arousal level, body awareness and muscle tone, as well as decreasing defensiveness.

Proprioception is a form of sensory input to the muscles and joints which makes us aware of our "position in space" (i.e., where we are in relation to other objects or people). Children who have difficulty interpreting proprioceptive input have trouble grading and planning their movements and regulating their level of arousal.

You may see a child who accidentally breaks things often, appears clumsy and uncoordinated and may have an excessive need to crash and bump into objects, walls and people.

If they are seeking out excessive proprioceptive input, they are looking for a way to calm and organize their nervous system. They may seem disruptive, full of excessive energy, or even unsafe. These are the crashers, jumpers, movers, and shakers! These are the children we ABSOLUTELY want to target with heavy work activities. It WILL make a difference in them!

The following is an extensive list of heavy work activities/proprioceptive activities that may help regulate a child's arousal level, concentration, ability to fall asleep or sit still and attend to a task.

Keep in mind, the type of heavy work activities, timing and duration is most effective when directed by a professional (such as an Occupational Therapist) knowledgeable about this type of proprioceptive input.

It is also important to note which activities calm your child, arouse them, or over arouse them. This is very unique to each individual and must be observed and treated as such!

You want to choose activities THEY are interested in and that IMPROVE their state of arousal to its most functional point.

Gross Motor Activities

Carrying objects, such as...

groceries
animal backpacks
kids fanny pack
stacking or moving chairs/books
watering can/hose
baby's diaper bag
ANYTHING with weight to it
Wearing a weighted vest, weighted hat, or weighted shorts

Wearing wrist or ankle weights

Using a weighted lap pad or weighted blanket

Swimming with or without swim weights

Pushing or pulling objects and activities, such as...

toy shopping cart
laundry basket
kids wagon
raise/lower flag at school
tug of war rope
rainbow putty press (flatten putty on wall or desk/table)
toy vacuum
mop/sweep floor with a mop, broom and dustpan for kids
wrestling
shoveling snow with a kids snow shovel
raking leaves, dirt etc. using a kid's wheelbarrow and Brio Garden Tools: rake, spade, shovel and broom
pushing/pulling self or others on a jumbo scooter board
Thera-Band
"push of war" between partners (with ball, have to cross over line)
riding bicycles / scooters
kids roller blades
Jumping and bouncing on/with items, such as...

on a trampoline

on an old mattress or soft area
into bean bag chairs
on a therapy ball (with adult assistance of course)
on a pogo stick
moon shoes
on a hopping ball
horseback riding
with a jump rope
foam hopscotch pads
ankle twister jump ropes
floor gymnastics
happy hop ball
on jumpolenes or backyard bouncers
Wheelbarrow walk relays

Potato sac/jumping bag races

Lizard crawl (belly on floor, push self with elbows)

Climbing/hanging on things, such as...

on jungle gyms/Geo-Dome
monkey bars
jungle climber with swings
hanging rings and trapeze
"Twizzler"
zipline/fun ride trolley
rock walls
outside on rocks or trees
up ladder and/or slide
climbing rope
climbing/cargo nets
Body Sox (TM) or a Super Shape Changer

Walking/running/playing in the sand

"Sandwich"/ Squishing activities...

make a child "sandwich" between floor pillowsor cushions
roll child up in mat or heavy blanket as a "hot dog"
give child heavy blankets, weighted blankets, or sleeping bags (for children) at bedtime
bear hugs
firm towel dry after baths, wrap up tightly
roll an giant gym/exercise ball on top of them while they lay on the floor
Twister

Crabwalk (hands and feet on floor, belly up) games, such as...

relays
soccer
volleyball (in crabwalk position kicking balloon with feet in air)
(Click Here For Specific Gross Motor Activity Ideas For Toddlers)

Fine Motor/Upper Extremity Activities

Working at vertical surfaces (at/above eye level), such as...

with tabletop easels
erasing, coloring on chalkboard
painting/drawing on adjustable floor easel
washing windows
wipe down shower or tub
paint with water on side of house
Resistive tools or toys, such as...

clothespins
spray bottles
use curvy cut scissors to cut putty, play-doh, thick paper or cardboard
Play Doh Factory presses and molds
use rolling pins to flatten cookie dough/play-doh
color/draw with crayon on textured surface or rubbing plates
bingo/dot markers
paper punches
spray nozzle on garden hose
(Click Here For Tons Of Fine Motor Skills Activity Ideas And Products!)

Fidget or play with stretchy/squishy items, such as...

Theraputty (hide and seek with coins, tug of war, cut and flatten to make cookies, roll out to make letters, etc.)
play-doh (Check Out Recipes For Play Doh, Silly Putty, Paints And More)
The Silly Putty Store and The Crayola Store
rubber bands
Morf stress relief balls
relaxable squeeze balls
"squishies" (fill two balloons, inside each other, with flour or sand)
Resistive surfaces, such as...

sidewalk chalk on driveway/sidewalk/playground
color pictures taped over sandpaper
use sanding blockto sand wood project
brush the family dog
Use weighted pens, pencils or utensils

Multi-person parachute games and activities

Cooking activities, such as...

stirring
pressing
kneading
Etch-a-Sketch with resistive knobs (shaking with both arms to clear screen)

Dig and play in the sand with a homemade toy backhoe , or with some cool beach and sandbox toys using sand and water tables or, wooden covered sandboxes

Oral Motor Activities:

Chewy foods such as...

dried fruit
gummi bears/worms etc.
licorice
beef jerky
bagels
cheese
granola bars
gum
raisins
taffy
soft pretzels
popcorn
Resistive sucking using items such as...

through thin curly straws/krazy straws
sports bottle with long straw
lollipops
popsicles
drink milkshake with a straw
hard candies
peanut butter
Blowing activities, such as...

wind instruments
bubbles
balloons
whistles/slide whistles
"snake"/blower party favors
make splatter paintings (use thin paint on paper... blow air through a straw and watch the paint move! can also use chocolate pudding thinned with milk on freezer paper)
Blopens
blow tropical fish bubbles in the bath
kazoos, whizzers, and other noise makers

Related Resources
Check out more great products, heavy work activities, and ideas within these two articles... Sensory Integration Activities and Sensory Integration Products

Childrens Playground Equipment - A comprehensive article on the benefits, and a great selection of, children's playground equipment. This includes; outdoor, indoor, wooden or plastic playground equipment, AND climbers or swing sets.

Oral Sensitivities - A great resource for the signs of oral sensitivities (hypersensitive or hyposensitive) as it relates to Sensory Processing Disorders, as well as great treatment ideas!

Proprioception And Proprioceptive Dysfunction - An in-depth article defining proprioceptive dysfunction; signs and symptoms to help you understand the REAL reason your child may not be able to learn new motor tasks or has a high energy level.

Sensory Room - extremely therapeutic for both children and adults with, or without, sensory processing/sensory integration disorders.

is it adolescence or is it autism?

2009-05-31T12:34:00.002+01:00

this is a question i have been asking myself a lot lately.
sophie has always loved her own company - obviously - and for a few years has happily spent time in her room watching her videos/dvds. the difference between now and then is that she would still enjoy playing outside in the sun on her trampoline. she hasn't done this for months, not without encouragement and is not outside for long. i wonder what will happen when summer finally arrives - hopefully - and we get the pool out. will she venture outside of her own accord or will she continue to stay in her own inner sanctum?
i know she is happy doing what she does but i feel she is not making life easy for herself by continuing to shut herself away.
during the summer holidays her school does run a summer playscheme and this year i am
seriously considering enrolling her on it this year. she has been on them in the past. i feel she needs to get out and about more and this would be a good starting point.
it's a vicious circle. she prefers her own company partly due to her autism but i feel as she enters her teenage years this seems exacerbated by the adolesence's ' i want to be alone' syndrome.
do i let her be or do i gently coax her out?

sensory systems

2009-05-26T11:56:00.003+01:00

I am by no means an expert on this, Sophie's diagnosis of Sensory Processing Disorder only came about last October, but I have read much about it since. The following information is as a guide only.

TACTILE (TOUCH):
SKIN - the disribution of cell varies throughout the body, but the areas of greatest density are the mouth, hands and genitals. The function of this system is to provide information about the environment and object qualities - touch, pressure, texture, hard, soft, sharp, dull, heat, cold and pain.

VESTIBULAR ( BALANCE):
INNER EAR - this is stimulated by head movements and input from the other senses, especially visual. It provides information about where our body is in space and whether or not our surroundings are moving. it also tells us about speed and the direction of movement.

PROPRIOCEPTION (BODY AWARENESS):
MUSCLES & JOINTS - these are activated by muscles contractions and movements, providing information about where a certain body part is and how it's moving.

VISUAL (SIGHT):
RETINA OF THE EYE - this is stimulated by light, it provides information about objects and persons. It helps us to define boundaries as we move through time and space.

AUDITORY (HEARING):
INNER EAR - stimulated by air/sound waves, providing information about sounds in the environment - loud, soft, high, low, near and far.

GUSTATORY (TASTE):
CHEMICAL RECEPTORS IN THE TONGUE - these are closely entwined with the olfactory (smell) system and provide information about the different types of taste - sweet, sour, bitter, salty and spicy.

OLFACTORY (SMELL):
CHEMICAL RECEPTORS WITHIN THE NASAL STRUCTURE - closely entwined with the gustatory system these provide information about different types of smell - musty, acrid, putrid, flowery and pungent.

SENSORY SCREENING

VESTIBULAR SYSTEM
DOES YOUR CHILD:

* Appear fearful of playground equipment or carnival rides
* Become sick easily in cars, elevators and rides
* Appear fearful of heights or stair climbing
* Avoid balancing activities
* Seem oblivious to risks of heights and moving equipment
* Engage in frequent spinning, jumping, bouncing and running.

TACTILE SYSTEM
DOES YOUR CHILD:

* Avoid touch or contact
* Dislike and avoid messy play
* Appear irritated by certain clothing and food textures
* Appear irritated when someone is in close proximity
* Often appear very active or fidgety
* Have difficulty manipulating small objects
* Use their hands to explore objects
* Mouth objects

PROPRIOCEPTIVE SYSTEM
DOES YOUR CHILD:

* Exert too much or not enough pressure while handling objects
* Assume body positions necessary to perform different tasks
* Enjoy rough and tumble play
* Seek deep pressure by squeezing between furniture
* Relax when given firm massages

VISUAL SYSTEM
DOES YOUR CHILD:

* Appear uncomfortable in strong sunlight
* Appear sensitive to changes in lighting
* Turn away from television or computer screens
* Focus on shadows, reflections and spinning objects
* Have difficulty scanning environment
* Respond when new people enter a room

AUDITORY SYSTEM
DOES YOUR CHILD:

* Become upset with loud or unexpected noises
* Hum or sing to screen out unwanted noise
* Respond to voices

OLFACTORY AND GUSTATORY SYSTEMS
DOES YOUR CHILD:

* Dislike strong smells or tastes
* Crave strong smells or tastes
* Smear their feces
* Eat non-edible foods

GENERAL SELF-CARE CHECK LIST IN IDENTIFYING DIFFICULTIES

TOUCH:
* difficulty in tolerating touch by a facecloth and or towel
* rubs the spot that was touched
* seems to need rigid rituals
* difficulty tolerating splashing in the bathtub
* dislikes teeth brushing
* complains that the toothbrush/hairbrush hurts them
* can react aggressively to touch
* dislikes hair brushing or anything on the head
* dislike touch on the bottom, from a diaper or toilet paper
* wants to wear clothes all the time or may even prefer to be naked
* difficulty tolerating temperature change

PROPRIOCEPTION:
* constant dropping of objects (toothpaste, brush etc)
* too much/not enough pressure with objects of self-care
* really enjoys shower rough toweling or or firm hair brushing
* unable to change body position to accommodate task

VESTIBULAR:

* resistance to a change in head position/movement
* prefers to hold head upright
* may become disorientated after a change in head position
* difficulty with balance getting in and out of the tub, ashing lower body
* difficulty bending over hte sink
* fearful of sitting on the toilet, especially if feet don't touch the ground

SENSORY PROFILE

SENSORY PROCESSING :
Auditory Processing
* responds negatively to unexpected or loud noises
* doesn't respond when name is called (hearing is ok)

Visual Processing
* covers eyes or squints to protect eyes from light
* becomes frustrated when trying to find objects in competing backgrounds

Vestibular Processing
* becomes anxious or distressed when feet leave the ground
* seeks all kinds of movement activities

Touch Processing
* expresses distress during grooming
* touches people and objects to the point of irritating others

Multi Sensory Processing
* has difficulty paying attention
* leaves clothes twisted on body

Oral Sensory Processing
* shows strong preference for certain tastes
* mouths objects

MODULATION

Sensory Processing Related to Endurance/Tone
* has a weak grasp
* props to support self

Modulation Related to Body Position and Movement
* seems accident prone
* takes movement or climbing risks during play that compromise safety

Modulation of Movement Affecting Activity Level
* prefers quiet sedentary play
* "on the go"

Modulation of Sensory Input Affecting Emotional Responses
* rigid rituals in personal hygiene
* doesn't percieve body language or facial expressions

Modulation of Visual Input Affecting Emotional Responses and Activity Level
* avoids eye contact
* watches everyone when they move around the room.

BEHAVIOUR & EMOTIONAL RESPONSES

Emotional/Social Responses
* seems anxious
* has difficulty making friends

Behavioural Outcomes of Sensory Processing
* has trouble staying between the lines when colouring or writing
* has difficulty tolerating changes in plans and expectations

Items Indicating Thresholds for Response
* jumps from one activity to another so that it interfers with play
* does not seem to smell strong odours

I hope those of you that read this find it helpful. If you have any concerns please contact your doctor.

meanwhile back at the ranch. . .

2009-05-25T13:35:00.002+01:00

From the moment Sophie was diagnosed, my own life seemed to take a back seat. All efforts were concentrated on trying to understand this condition and why it had happened. Even today I am continually finding out new things about what Autism entails and how it could possibly help our daughter.

As to why it happened, no-one knows. A the back of my mind lurks the ominous shadow of the M.M.R. jab. Did this supposed safe vaccination rob me of my daughter? I read all the hype from both sides of the fence but I'm afraid you will never convince me that there isn't something in the concoction that brings about this condition in some children. Sophie even suffers from bowel problems that seem to be prevalent in those children affected by the M.M.R.
It will never be admitted by the government, it took them over 30 years to admit the mistakes that were made with Thalidomide. M.M.R. and Autism is a battle that will always rage. Those parents whose children have been affected know in their hearts what they feel caused their child's disability and the professionals who want to see disease eradicated will always assure the public that vaccinations are safe.

My mental health took an almighty battering. I became very angry at the world for allowing this to happen. This was not the life I had planned out for me and my daughter. She was becoming a stranger to me and the harder I tried to reach her, the further into her own world she retreated. Why had she changed? What had made the little sociable, talkative girl I knew turn onto this mute, introverted stranger? I knew I loved her, love was never in question. It was being able to like this little stranger. She was not the little girl I was used to. The child I wanted, the child I had given birth to would never return. I was suffocating and needed room to breathe.

Salvation came in the form of my parents, I was fortunate enough for them to live locally. They could see where I was heading and were adamant that Sophie would not go into care. For the next few years they were my daughter's carers and my life preserve. I saw Sophie every weekend, kept in touch with her school and began building my life back together.

I took prescribed medication, attended regular counselling sessions and even enrolled on a college course. I made new friends and got in touch with some old ones. I became open about my daughter's condition and talking about it became a release for me. She was still my little girl and I wanted to be strong enough to have her home with me full-time. I even did a few lectures at college myself, explaining to students what life was like with a disabled child. Nerve wracking though these sessions were, they were also therapeutic.

I slowly started a social life as well, learning to enjoy myself again and to smile. My first attempt at a relationship post diagnosis was not a successful one. Looking back, I wasn't really ready for it, emotionally or otherwise. I found myself unexpectedly pregnant - I was barely strong enough to look after myself let alone another child - which resulted in a termination after a consultation with my doctor. Things in the relationship weren't right from there on in and after a few months I grew strong enough to accept it wasn't working. He was emotionally immature and I was still at a fairly low point in my life. On the plus side, he introduced me to the man who is now my husband.

I first met Lloyd in the summer of 1998 and we bumped into each other again in May 1999. A group of us ended up back at a mate's house after a night on the town and one by one as the others fell asleep we sat talking and playing Colin McCrae on the playstation till morning light.
I then went on holiday with my mum, dad, nephew Lee and Sophie to Tunisia for two weeks. We got together a couple of days after I got back and we've been together ever since.

I didn't introduce Sophie to him straight away, but when the two of them did meet it was wonderful. Sophie took one look at him and climbed on his knee as if she'd done it all her life.
slowly he made me realise that just because she's autistic doesn't mean she needs to be wrapped in cotton wool for the rest of her life. He was very fair with Sophie but also strict. I was shocked at first but came to realise she needed to learn rules to live by the same as any other child, to learn right from wrong. I had made excuses for Sophie because of her condition but in doing so I hadn't really made life any easier for her. I remember Lloyd saying to me once:
"Just because she's autistic doesn't mean she's stupid." He was absolutely right.

She didn't have spoken language but there were other ways to communicate with her. Over time, with a combination of P.E.C.S., Makaton, electronic talker and Sophie's own gestures we've learnt to 'talk' with Sophie. She knows when we are joking and when we mean business. She may not always like it but slowly she accepts it.

With Lloyd's help I became strong enough to have Sophie home full-time, where she remains to this day.

We have now been together 10 years and added to our family with the birth of Travis John in 2001 and Emily Amber Rose in 2003. We finally took the plunge and married in March 2007. It was not the church wedding we had planned originally, we bought the ceremony forward by more than 6 months so that my father was able to attend - he was becoming increasingly frail due to advanced prostate cancer - and he proudly walked me, his 3rd and final daughter down the aisle at the registry office. I would've got married in barn if it meant my dad could've given me away.

It hasn't been an easy 10 years, we've had our own trials and tribulations to deal with. Just 4 months after Emily was born lloyd was sick from work for 4 months with a shoulder injury. That in itself wasn't so bad but a misunderstanding with his boss on his return to work knocked his self confidence and resulted in a full mental breakdown 14 months later. I now had two toddlers to run around after, Sophie to take care of and a severely ill partner to take to and from appointments. It was like having a fourth child and being a single parent. Emily never really bonded with Lloyd for the first 18 months to 2 years of her life and Travis was a very confused little boy. He knew something was going on but wasn't old enough to fully understand.

Again my life was to take a back seat and for well over 9 months I was just a face who sat in the corner while the doctors tried to bring Lloyd back to the man he used to be. The first time one of them asked me how I was doing was a shock and a relief. With a sudden flash of light I realised just how much I had been carrying on my shoulders. I had ti let it all out somehow and I did with another series of counselling sessions. Through it all though, I kept going - I had to - because if I fell apart as well who who was going to pick me up?

These days Lloyd is a lot better and life is a little easier. We made it to the other end of the tunnel. We like to think that with all we've been through we can cope with anything. Parenting a disabled child is never easy but it's definately easier with a partner by your side.

Sophie, the first 3 years.

2009-05-22T17:43:00.002+01:00

I was a single parent when Sophie was born, so I knew life wasn't going to be easy. Her father and I parted ways before she was born and he's never played a part in her life. At first, despite the late night feeding and sleepless nights I quite liked the idea of it just being my little girl and me. I had visions of us going everywhere together and as she grew older having her able to treat me as a friend more than her mother.

She always was a sociable child. She spoke early and soon started to put words together. She walked at 11 months and was soon running around everywhere.

Even a stay in hospital when she was 10 months old didn't dampen her spirits. She had been off colour for several weeks and all my G.P. could tell me was that it was a virus. At one point he even insinuated that I was a neurotic mother. One weekend she had yet another high temperature so yet again I took her to the doctors. It was a different doctor this time and he took one look at Sophie and decided she needed to go into hospital. She was in a room of he own and given barrier nursing as they really didn't know what the problem was. Whatever it was it had now spread to her bowels and she had severe diarrhoea. They took urine and stool samples and did blood tests. They also fitted her with an I.V. tube so they could administer antibiotics quicker.

In total she spent 3 days in hospital. After more visits and tests, she was diagnosed with a kidney reflux. She was given long term antibiotics and had regular check-ups for a few years until she was given the all clear.

When she was 14 months old, Sophie and I went on holiday to the States with my mum to visit her dad. This was not her first trip on a plane - though it would be her longest - as we had been on holiday to Spain twice before. any worries we did have about her coping were unfounded. She spent the majority of the journey walking up and down the aisle saying 'hello' to everyone and soon won the hearts of the British airways cabin crew. As we disembarked one of the Business Class cabin crew came and gave us a bottle of wine, and a large one at that. Apparently, they de-cork several bottles in business and first class for their passengers. Not all the bottle always get used and as they happened to have some left over and because Sophie had been so well behaved, they decided amongst themselves that we should have one. It was the first and last time I'd tasted British Airways wine, but I remember it being very nice and very strong! Many thanks B.A.!

We had a lovely time with mum's family and for 90% of the time Sophie was an absolute angel. The other 10% she cut her back teeth so was not in the best of moods. Even when we went out for meals the staff were besotted with her and her 'pleases' and 'thank you's'.

It was around this time that she had a real fascination for peas, she would eat them with anything. whilst in America, we all went out for dinner at a local restaurant where my aunt worked part-time. After a quiet word in the chef's ear, they bought out a side dish of peas, just for Sophie. Another time, we all went to Frankenmuth for the day, we all scooped our peas out of our chicken noodle soup so Sophie could have them. At the time, I thought it was just a cute toddler habit, but who knows?

She also became best buddies with my aunt's cocker spaniel called jasmine. jasmine had taken to wandering sround the house with a dummt in her mouth after my aunt's granddaughter had left one behind after a visit. Early in the mornings, as we all sat round the kitchen table drinking coffee - I was drinking tea. I haven't drank coffee since a burning incident when i was a child. - Sophie would crawl under the table to keep the dog company and it wasn't long before the pair of them were swapping dummies. When Sophie cut her back teeth she developed a taste for my aunt's beef jerky and again would crawl under the table to give the dog a lick. The pair of them were inseparable!

When the time came for us to return to England, we bought jasmine a pack of dummies as a parting gift.

I suppose, looking back with the benefit of hindsight, when we got back was when the problems began, but it didn't register at the time. Every toddler has tantrums after all, Sophie was my first-born I didn't have anything to go on.

The following March we went on our annual holiday to Spain with my mum and dad. This was when I started to notice things weren't as they should be. The one thing that stands out is the decline of spoken language. she had always been eager to talk and communicate, now the words she spkoe - though still clear - were beginning to dwindle. her behaviour was way off as well. Anything I said literally when i one ear and out the other. It wasn't that she was ignoring me, I believe her whole comprehension of language had just evaporated. I did wonder what was going on but wasn't particularly bothered as all toddlers can regress at some point.

I did make an appointment to see my Health visitor and she arranged for a hearing test as this seemed an obvious choice with the decline in her language. It took place at our local health clinic and I wasn't really that surprised when she failed it. The fact that my daughter was ignoring me was nothing personal. She was then given a more detailed hearing test at a local hospital and also referred for speech and language therapy. They were concerned if she could understand what was being said to her, not just the fact if she could hear it.

During this time, potty training came to an abrupt end. It was too much for Sophie to deal with as it soon became clear she didn't have a clue as to what she was doing.

Inside, I was hoping it would be something to do with her hearing, this was something medical specialists could deal with, even cure and my little girl would like she once was.

The word Autism had been raised in conversations, with family - one of my sisters who is a nurse of nearly 30 years standing - and as well as doctors but it wasn't a subject I knew about or really though was the problem. Autism was something that happened to other people, not me. There was no history of any kind of it in our family so why should I be worried.

Sophie was already under a paediatrician due to her kidney reflux. He wanted her to have further tests to see if there had been any scarring. Whilst awaiting her audiology appointment I took Sophie to see our G.P. to discuss the ongoing problems. I think this was the first time I really considered the fact that my daughter may have a serious problem. We had a long conversation about her behaviour and the little traits that had begun to show. Looking back in a diary I kept at the time, I had written that head hitting and ear poking were becoming a real problem. She was also having 'vacant episodes'. He still seemed to think that the majority of her problems could be hearing related, even the behavioural problems but agreed to get her paediatrician to see her again. Autism was also raised - by me - and the doctor asked me if she interacted with other children. I admitted that she had good days and bad but she did seem content to be on her own and look at her books.

I wanted my daughter to get whatever help it was she needed, I wanted someone to tell me why my daughter was changing in front of my eyes and what I could do about it. I had even written in my diary the prospect of special education.

whilst all this was going on, I was offered a new job, a full-time one in retail management, something I had trained for when I left school. I took the job, I didn't want to rely on benefits, I wanted to support myself. I did have a boyfriend at the time, but he didn't turn out to be the guy I thought he was. (He ended our relationship one month after Sophie was diagnosed. I was absolutely devastated and hit one of the lowest points of my life but am proud to say I am fully recovered.)

Sophie's audiology appointment took place November 1997. My mum took Sophie as I had only just started my new job and was unable to get the time off. They told my mum at the hospital that there were certain frequencies that she could not hear but not enough for it to have affected her speech. They believed there was an underlying problem but saw no point in referring her to the E.N.T clinic as they did not believe they would be able to do anything for her. he following week she went to see her paediatrician and the tests started to happen thick and fast- blood tests, urinology tests, an E.E.G and a C.A.T scan.

The C.A.T. scan is the one day that will be forever etched on my mind, for all the wrong reasons. All I had been told was to arrive 2 hours before her appointment so she could be examined and given a sedative. by the time we got there she was already tired so not in the best of moods. The ward doctor was running late so by the time she got to Sophie the nurses had already administered the sedative and consequently Sophie was not happy at being woken up and manhandled. After she had been rudely awakened there was o way she was going back to sleep! Then they told me it could take upto 1 and 1/2 hours for the sedative to take full effect when they had only given it to her with 45 minutes to go before the C.A.T. scan! Needless to say she was still awake when they took her down to the scan room and when they tried to lay her down she was having none of it! This was the point in time that I snapped. I slung my lead vest to the floor, picked my screaming daughter up and went to walk out the door, only to find they had locked it. A nurse told me I wasn't able to leave the room and I told her in no uncertain terms that I was leaving whether she liked it or not and she would unlock the door! I took Sophie back to the ward, left her in the care of my mother who had come with me and went outside for fresh air and a much needed cigarette! A supposedly routine scan appointment was rapidly becoming a farce. Two hours later Sophie was indeed sleeping like a baby and the scan was carried out with no problems. When we got back to the ward it was mentioned that Sophie may well have to stay the night if she didn't come round from the sedative. Again, I had not been told this prior to our appointment and had not come prepared for such an event. Time was getting on, we had now been at the hospital for 6 hours and had little chance of getting home on public transport. By the time Sophie did wake up and have something to eat, we had been on the ward for 8 and 1/2 hours and had to get home by taxi, which was not cheap!

I categorically say it was the worst day of my life, and I was so angry at the complete disorganisation of it all and the fact that my daughter had been left completely terrified. I still believe it was this experience that has left her with a dislike of doctors right across the board.

9th February 1998, we went back for the results. Sophie's paediatrician told me she was autistic. He was a lovely man but I left that hospital with absolutely nothing. Nada. Zilch.

My health visitor was the person who saved me. She came round to visit and gave me phone numbers and addresses and information on a local support group. She gave a copy of The Code of Practice for the Assessment of Children with Special Needs. I still have it even now.

Whilst all this was going on, I was slowly falling apart whilst trying to keep my daughter's life as routine as possible. One day my neighbour came round and found me in a complete and utter mess. It was at this point in my life that my parents truly came to my rescue. Not that they hadn't helped me out before but if they hadn't've done that day I firmly believe my daughter would've ended up in care. I was son angry at the world that I broke down. Why me? Why had I been singled out to have all my hopes and dreams shattered? Why was life so bloody unfair? This is what happened to other people not me. I knew deep down that I loved her but I wasn't sure if I liked her anymore. My mum came round and took Sophie home with her and she lived there more or less full-time for the next two years. I still had regular contact with her and sometimes would have her home for the weekend but the majority of her care fell to my parents. I felt a failure as a parent, this was something I should've been able to cope with yet it terrifeid the life out of me. I needed to be able to be strong again, to be able to face this thing head on.

I read everything I could lay my hands on, my mum rang the National Autistic Society and they sent me a load of information through the post. I started to attend support group meetings, it was nice to know that I wasn't completely alone and wasn't going mad.

I applied for Disability Living Allowance and was awarded the lower rate of the care component. Back then you weren't allowed the mobility component until your child was 5 years of age. Slowly growing in bravado I decided to appeal against the decision and was told I would have to attend a tribunal, so the evidence gathering began. Every professional who had ever come into contact with Sophie happily gave their two pence worth. By the time we - my mother and I - got to the tribunal, held in Boston, I had a pile of papers 3 inches thick. I had copied everything and sent copies ahead so when the day came all papers had been read by the panel. They were all very professional, very courteous people - a G.P., a Health Visitor and a Magistrate. Experienced as she was in most family matters, the Health Visitor felt physically sick when I told her how Sophie's Autism affected our day-to-day life. She told me later that she didn't know how I coped with it all. I asked the magistrate why mobility was not awarded until the age of 5, though Sophie could physically walk, she did have co-ordination problems and was big for her age. A normal buggy was no longer either big enough or strong enough to carry her. He admitted that he didn't really know and that if I wanted an answer to ask a politician but not to expect an honest answer. Anyway, my appeal was granted and Sophie was awarded the higher rate which she still receives today.

Now we had the diagnosis, the next big thing was the question of education. She currently attended two local play groups. One was a nursery setting, the other was a church run play group. Both settings were wonderful and very understanding towards Sophie. The play group were happy to change Sophie's nappies although they didn't usually accept children who weren't potty trained. They even asked the Educational Psychologist to come along and see if there was anything in particular they could do to help Sophie. The nursery had visits from Social Services and the Occupational Therapist - yes they do exist! - and later on when Sophie began part-time at a special needs school some of the staff attended Makaton classes to help communication with Sophie.

She had been offered a place at the local primary school's nursery unit but after careful consideration I didn't think this would be the right place for Sophie.

Then , out of the blue, i had a phone call from the headmaster of a local special needs school. Apparently he had been given my details by the Education Officer at Lincolnshire County Council. He invited myself and Sophie to come and have a look round the school. In the past, this particular school had had a rough reputation and I wasn't keen - in fact I was mortified - on the idea of my daughter going there but after talking to my mum I decided I had nothing to lose in having a look.

I need not have worried. The headmaster was a lovely man as were all the staff. I don't really know what I was expecting but what I found was not as bad as I'd feared. Sophie was offered a place in their nursery/assessment class and began in June 1998. On her first day, she only attended for the morning, but I was at a complete loss. It wasn't like taking her to nursery or play group, I didn't drop her off, she went on orgamnised transport and came back in a taxi with an escort but I was still worried for her. How would she manage a completely new environment? I needn't have been worried, she loved it and still does.

Very slowly but surely Sophie began to change, the eye contact which had virtually disappeared begun to return. Interaction was still very on her terms but at least we now had some. Her rigidity of routine was still very much in existence but who were we to expect miracles?

anger, can it be a good thing?

2009-05-15T17:54:00.000+01:00

I have come to the conclusion that I live with anger on a day to day basis, but it's not necessarily a bad thing.

Apart from the obvious, I feel that anger makes me stronger, it gives me the strength to carry on and fight for what I believe in, where in other circumstances I could feel simply too tired to argue.

I get angry when the kids don't listen, I get angry when I feel my husband is acting the fool once too often and I get real mad when some little upstart on the phone tries tells me how much money I owe!

I'm angry - even after 11 years - that Autism robbed me of the daughter I gave birth to but I love dearly the child it gave me. I get angry when we can't afford something and I have to cut back on shopping - or buy cheap store brands - to stretch our finances a little bit further.

I still get angry that families like us still have to fight for what should be ours by right, that we can spend days chasing people for answers only to find out they don't have any. I get angry that someone on the end of the phone who probably has no idea what 'Autism' is gets to decide how much benefit we get and that we really have to lay the 'disabled' card on to the council when we need repairs around the house. Mind you, how any family with 3 kids can survive without any hot water or heating is beyond me! When Sophie was younger, they wanted us to wait 5 days to have a gas leak repaired!!!!

I get angry when people stop and look at Sophie. I stare back and in my head I dare them to open their mouths - they will be sorry indeed - if they don't choose their words carefully! I'm sure I heard that in a film somewhere, something to do with nasty Persians and lots of good guys wearing very little! Anyway, I digress. Years ago I would not dare look these people in the eye but now I hold my head high.

I think the difference between anger being good or bad is how you channel it.

I was really angry when my dad died and kept it bubbling away inside for months until it could contain itself no more and I fell apart. Now, if I feel anger coming on, I find myself something to do, I've even done ironing to calm myself down! Rather than become a very active volcano, I channel it more constructively. I'll go for a drive round the block, or phone a friend for a chat or make myself a nice hot cup of tea and have a side order of cigarette!

Smoking is my one vice, I rarely drink and on the really bad days it's a cigarette or all hell could possibly break loose!

I got angry when my son was being bullied at school, but am proud of him now for sticking up for himself. We tell him don't start a fight but by all means finish one.

I got angry when school failed to do anything about the head lice problem and Emily was continually having to be treated. Thankfully it is now under control and have not had any 'visitors' for months.

The list could go on and on - I once got so angry with my husband I threw all his clothes out the bedroom window! - but I wouldn't want to bore you. Please remember, it's not the amount of anger you live with, it's what you do with it!

fascinations

2009-05-15T17:53:00.001+01:00

Sophie loves Disney films, it's one of the few interests that has stayed constant throughout her life. Not just any old Disney films either, she prefers the original ones as I call them - Snow White, Jungle Book, 101 Dalmatians etc, though she has been known to watch Toy Story on the odd occasion. When she was little she would spend most of the day watching videos, I'd put one on when she got up so she would sit at her little table and eat her breakfast. I also became very good at timing it so the last one of the day would finish at bedtime.

When D.V.D's became all the rage, we decided to replace some of her older videos, we were already on our 2nd copy of Pocahontas and we'd been through several copies of Winnie The pooh. Once having to replace it after she decided to try and flush it down the toilet!

D.V.D's did confuse her slightly to begin with, every time she went for a video we would show her the DV.D. instead and soon with gentle persuasion she realised exactly what they were and took to them like a duck to water. The only problem being she didn't quite know how to work the D.V.D player so if she was in her bedroom she would still opt for the videos instead of asking for help.

We did away with videos in her room altogether at the end of last year when the video player in her room finally died a death. We didn't give her an expensive one for obvious reasons and so we decided not to replace it. We removed the confusion by taking the videos out of her room and packing them in boxes ready to go in the loft. Sophie didn't see this happen as she was at school. I put all her disney D.V.D's on the now empty shelf in her room and took a step back. She has now built up a nice collection of Disney classics on D.V.D. Needless to say it did not take her long to work out the D.V.D player, she's even worked out how to adjust all the colour controls on her T.V. so the picture is just how she wants it. Don't ask me how she worked that one out! She does tend to get stuck in a routine of watching the same one over and over again - 101 Dalmatians is the current favourite - she will also skip to all her favourite scenes and them again and again. we do try and encourage her to watch something different, but change is very difficult for her though we are able to sometimes make her see that not all change is bad. It can be a good thing, the world won't end just because she doesn't get to watch the end of Cinderella before bedtime.

Another one of her fascinations that has stayed with her throughout her almost 14 years is her passion for water. When she was younger, just after diagnosis, she would wear her wellies in the bath. I even remember what they looked like, they were little blue ones with Teletubbies on the sides. She would happily spend ages sploshing up and down in the bath , i would be on standby with the towels to soak it all up!

She loves swimming and has been going regularly since she was a baby when I used to take her to the local pool for mums and tots. She has never shown any real fear of water and is always keen to jump right in. Literally! One such incident took place in the summer of 2001, not long after Travis was born when she went swimming with school. They'd all had their alloted time in the pool and Sophie had got out quite calmly with her class to go and get dressed. Getting dressed wasn't the problem though, that was when the teaching assistant turned her back for split second and turned round again to find Sophie gone. Sophie being Sophie didn't see the point in hanging around doing nothing so she'd taken herself back through to the pool and jumped in - fully clothed! She didn't see what all the fuss was about! (This also reminds me the time my friends little boy went out into the garden early one morning and thought he'd go for a paddle in the paddling pool in his pajamas!) When her teacher rang me to explain why she was coming home in a borrowed set of clothes, I saw the story unfold in my mind before I'd heard it all and laughed. Not at the teacher, but at the image of Sophie making her bid for freedom! laugh is one of the things I have learnt to do over the years, it works wonders. It may not erase the problems we face or help with the obstacles that are sure to come but it eases the tension and for a few short moments you realise that things are not quite as black as you thought, that your child can also help you see the funny side of things in a way you probably wouldn't've seen otherwise.

Another similar incident happened when Sophie went on holiday to cyprus with my mum and dad and her babysitter. the morning after they had arrived they decided to explore the hotel grounds. Coming around a corner, they found the children's playground. Not really a problem you say, but directly beyond the playground was the beach and in the blink of an eye Sophie was gone. By the time Teri - her babysitter - caught up with her, she was waist deep in water! Again fully clothed. Luckily my parents saw the funny side but need less to say whenever they went back to the playground one of them always stood on sentry duty!

It's simple to say that water is Sophie's great love. Even now she likes to get in the bath with bottles and an old measuring jug, but now knows when she's had enough and will indicate when she is ready to get out instead of being told to get out.

She has all her basic swimming certificates from school, and can manage being out of her depth - unlike me, i tend to swim much like a brick when I go too deep! - though she's never alone in the water. When we go as a family, Lloyd follows her in the deeper waters while I stay back with Travis and Emily. Mind you, the rate they are coming along I shall soon be on my own!

I am glad that my daughter has found something that not only she enjoys but she does well. swimming is a big interaction for Sophie, she can still find public places overwhelming. When she used to come supermarket shopping with me - she's a teenager now, her bedroom is her haven - she'd walk round most of it with her eyes closed or look down at the floor, but with swimming this rarely happens. okay, so she doesn't exactly interact with other children - apart from her siblings - but she tolerates those around her. Sometimes children will try and engage her in conversation and when we see this happening we are open with them and explain that Sophie doesn't talk but that doesn't mean she's ignoring them. She communicates with noises of varying degrees and over recent years with smiles and cuddles. Again, this is something we explain to those who ask. Over the years we've come to accept that there are those who will ask questions because they want to know, because they see subtle differences in Sophie to themselves and then there are those who just sit and stare and mumble under their breath at that strange child in the water. It really used to get my back up and although it sometimes still does, nowadays I hold my head high. I refuse to let people's ignorance become my problem.

Water is such a part of Sophie's life that school have used it at times as a reward for when she has done her work - recently though it has been replaced by use of the t.v - she knows she gets to choose when work is done. On the other hand it can be withdrawn if she's being uncooperative. Even Sophie has learnt that work has to be done before you get to play.

At one point, one of her passions was puzzles. We began with the basic wooden peg ones but quickly progressed to 100+ pieces. She could spot where a piece went before I did. She even got very adept at doing them face down and every piece would fit correctly. (My husband at this point would probably like to tell you about the night I managed to do a 101 dalmatians puzzle which ended up with a 5 legged dog and every piece fitting!) She seems to have an almost photographic memory. At the last count she was up to around 250+ pieces but for now the fascination seems to have waned. The puzzles are under her bed though, just in case.

Another love of Sophie's is horse-riding and the discovery of this came about almost by accident. Several years ago now, Sophie was offered the chance to go riding with the school. We decided to give it a try. Word came back that Sophie was doing well, in fact the instructors thought she'd been riding before as she has a 'perfect seat'. We don't know where this comes from, I've never been on a horse and up until that point neither had Sophie, not even a donkey at the seaside. She mounted the ponies with ease - with the aid of steps - and after beginning to hold onto the saddle she soon learnt how to hold the reins and was perfectly at ease on the back of a pony. After this initial sucess we enquired about lessons at a local stables. To start she had private lessons, just her and the instructor leading her on the reins on a mini hack. After a while she was given the opportunity to join a group specially run for disabled youngsters. Sophie loved it. We bought her a set of coloured reins so she learnt how to correctly hold them and where to hold them to tighten them in. Money was donated to the groups so all the children got their own helmets. They were never quite brave enough to let her off a lead rein though, with Sophie she probably would've made a bid for freedom at the earliest possible chance. Sophie was extremely happy when riding. Every week, as soon as the car pulled into the yard the giggles would start, as she got out the car she would be bouncing up and down and she had everyone laughing as her laughter echoed around the indoor school. Even the ponies were never alarmed by her noises. She could trot with ease and even canter with no problem.

One momentous occasion for us was when Sophie competed in the 'Eastern Region Special Olympics'. The first time she took part she received two 5th place rosettes from the mayor of Peterborough. Everyone clapped and cheered as her name was announced and I led her to the centre of the arena to collect her rosettes. She stood on the podium and smiled, I was so proud of her. The following year she came home with one bronze medal and a 5th place rosette. We had the medal specially framed and even now it still hangs proudly on her bedroom wall.

Unfortunately relations with the stables broke down and we took Sophie out of the group. We found another stables happy to give her private lessons. The first time I took her though, we spent half an hour gently coaxing her in to the yard. The pony they initially gave her was voice trained so ther was no need for a lead rein. These lessons, though Sophie enjoyed them were expensive and when Lloyd fell ill and had to give up work we could no longer afford them so unfortunately horse riding came to an end.

She remembers it well, and still loves horses. All her rosettes still hang in her room and she has some lovely paintings of horses on her wall. She will look at photos of herself riding and she has a collection of 'Thelwell' models on her window sill.

Sophie has always been a very tactile child, as a toddler she always used to hang her arms out of her buggy so she could touch the hedges and walls as we went by. Sand was another favourite, she would sit for ages just feeling the sand as it fell through her fingers. She loves the feel of it and loves to have her legs buried on the beach when we go on holiday. At school she used to pour dried beans and peas from one container to another. We did try this at home but soon limited her to doing it outside as the carpet never seemed to be free of dried vegetables!

Though she's always been a little unsure of wide open spaces, she loved the security of our back garden. Almost immediately after diagnosis I went to the local council to state my case. The rented house I was living in at the time had a postage stamp as a back yard. Even the Occupational Therapist at the time stated she would benefit from a garden to vent herself safely. The housing officer I spoke to was actually very understanding and sympathetic and almost 5 months to the day I first approached them I was given a council house with a lovely back garden. Some minor adjustments were needed to make it totally Sophie-proof but we soon gained a slide, a climbing frame, a swing, a scooter and a sand pit. If a bad day was imminent, I knew that time she spent outside gave gave her the chance to vent her frustrations and feel a little calmer. I let her out and watch from the kitchen window. It gave Sophie time to chill out and me five minutes before the next onslaught began.

Even now she still likes the garden, especially in the summer when the pool is out, she can be out from dawn till dusk and come in at the end of the day resembling a prune! She also has a large trampoline which we invested in some years ago to give her exercise. Now Travis and Emily are bigger, the three of them quite happily bounce away together, whereas before they would be in danger of being launched into space! It's lovely to see the three of them interact the way they do when they do this, Travis even came up with sign to use for when they want Sophie to bounce them higher on the trampoline. What's more Sophie understands and responds!

Most of these fascinations have stayed with Sophie throughout all her years. some may get put on the back burner for a while, but they always return for a while at some point. Some she has a real talent for, others are merely fascinations but they are part of what makes Sophie who she is and we wouldn't have her any other way.

Sophie and GFCF

2009-04-28T11:46:00.001+01:00

I really am looking into this GFCF diet, i have been plowing the internet looking at sites for information and brochures on vitamins etc. One thing that the majority seem to agree on is that any kind of diet and supplementation should only be undertaken alongside the advice of your GP or dietary professional. Sophie is currently under a consultant for one and another and we are due to see him at school again in June. I have decided to look into things as much as I can between now and then and then when we go and see him I will be fully armed! They run a dietray and nutrition clinic at peterborough hospital, so if he is agreeable to us giving it a go then it shouldn't be difficult for him to refer us.

I'm not expecting miracles, sophie is 14 this year and i know in some respects maybe we have left things a little late. I don't expect her to wake up and initiate a full conversation - if she did it would be wonderful but i'm not expecting it! - but anything can help her live in this world we call home will be a bonus.

Please look at my list of websites as some of them do have some really useful information and links. Dietary Needs Direct is purely a website that supplies products that fit the criteria of the GFCF diet. They state the following:

* diet intervention has helped many on the spectrum

* GFCF doesn't need to be expensive

* GFCF doesn't involve any drugs or intensive behaviour treatments.

* there is nothing to lose in trying, only things to gain

They advise you remove 4 essential things:

* gluten - protein found in wheat, rye, barley and oats

* casein - protein in all mammalion milk

* aspartame - group name to some artificial sweeteners

* Mono-Sodium Glutamate - a flavour enhancing chemical

I have been told by a few facebook friends that the following is a good book:

"Biological Treatments for Autism and P.D.D."

by Dr William Shaw.

He says the book can also help with the following conditions:

* Pervasive Developmental Disorder

* Attention Deficit Disorder

* Williams Disease

* Down's Syndrome with Autistic Symptoms

* Rett's Syndrome

* Fibromyalgia

* Multiple Sclerosis

* Tuberous Sclerosis

* Prader-Willi Syndrome

* Tourette's Syndrome

* Fragile X

* Neurofibromatosis

supplementation

2009-04-26T13:34:00.003+01:00

I am no expert on this subject, but I have taken to looking into this quite a bit lately. There seems to be so much about it. I listened to Jenny McCarthy's keynote speech at the Autismone conference in Chicago, and she described how supplementation has helped her son. I took notes of what she said and also looked through the 'autism file'. This is what i have so far and what i understand. I have only gone into brief details so as not to confuse you.

Living on a G.F./C.F./W.F diet can be of benefit to ASD children. They cannot digest gluten and casein properly, it has an almost opiate effect on them and they can become addicted to it. Limiting the amount of carbohydrates they have in their diet can also help. Carbohydrates can aggravate existing bacteria in the gut. ASD children can also have problems with absorbing nutrients so these need to be supplemented. Some children with ASD have been found to have a yeast overload. One reason for this is repeated antibiotics over a period of time can strip the gut of both good and bad bacteria, leaving yeast to grow freely. Laughing for no reason, tip-toe walking and hand-flapping are said to be signs of yeast overload. These actions are common among autistic children.

Below i have made a list of supplements /herbs etc that according to what i have read/found so far can be of benefit to those with ASD.

THREE-LAC:

a probiotic. these are dietary supplements that help prevent gastro-infections, they help gut flora re=establish themselves. there are also claims that it can aid towards strengthening the immune system.

CULTURELLE:

probiotic. helps towards better digestion which in turn aids the immune system. it also helps gas, bloating and upset stomachs.

COD LIVER OIL:

is clinically proven to have a positive effect on brain function.

CAPRYLIC ACID:

an anti-bacterial, anti-fungal and a fatty acid.

You can also ask your doctor for a blood test for food allergies, as these can also have an effect on behaviour. apparently a blood test can also be done to detect viruses within the body as well.

Some people claim to see dramatic improvements in their children after hyperbaric treatments. (hyperbaric oxygen chambers).

As i said at the beginning this is only a very brief overview. i hope you find it interesting if nothing else. thanks for reading.

VITAMIN B6:

though not scientifically proven, it is thought together with magnesium this can be used as an alternative medicine for autism. it can also help the effects of ADHD, with improvements made in attention and with aggression.

CALCIUM:

to be supplemented for lack of dairy products for those who are found to be lactose-intolerant.

ZINC:

aids immune system cells and those in the gut lining. also helps with development and digestion.

DIFLUCAN:

an anti-fungal which aids weak immune systems.

NYSTATIN:

anti-fungal which helps with gastro fungal infections.

GLUTATHIONE:

an antioxidant. protects the body from toxins such as free radicals.

CHELATION THERAPY:

detoxification. it is a way of removing heavy metals from the body. some will state that there is controversy as to whether there is a proven link between metals (mercury, thiomersal, lead) and autism. this is not my personal view!

GINGER ROOT:

can aid the reduction of spasms and it can absorb and neutralize toxins in the digestive tract. it also contains ingredients that soothe the gastro intestinal tract and aid digestion.

ASTRAGALUS:

assists healing from a chronic illness and is a stamina tonic. it boosts energy, is anti-viral and amplifies efficiency of many immune functions.

GINGKO LEAF:

offers promise for treating a large collection of brain, nerve and circulatory conditions. increase blood flow to brain and central nervous system. its unusual biochemical properties lend it to treating memory loss and cognition disorders. one of it's most dramatic properties is on the memory where it can improve concentration, short and long-term memory, absentmindedness, confusion and fatigue.

GOTU KOLA LEAF:

a herb with a long history of brain building. it has a host of benefits for neurological recovery and cognition. it is a rejuvinator for the nerves and brain. it can strengthen memory, concentration, intelligence and longevity. it is also an anti-inflammatory and anti-oxidant.

CALAMUS ROOT:

is said to stimulate power of self-expression and enhance intelligence. it is a bitter herb that can act as a anti-gas digestive and mucolytic (breaks down chemical structure of mucus molecules) so it does see use in autism.

PEONY ROOT:

the chinese recommends it to "soften and comfort the liver", which can be so important in hormone balance. it is also used for insomnia and mood swings.

BLACK COHOSH ROOT:

'the autism file' asks the reader to make a point to look at this to promote a positive change in digestion, cognition, emotional balance and brain balance. it can have a lot to offer.

more on supplementation

2009-04-26T13:32:00.002+01:00

KIRKMAN LABS:

One of the oldest and leading manufacturers of nutritional supplements for individuals with food allergies, special dietary requirements and environmental sensitivities.

Signs of Immune Problems:

* frequent illness

* continuous food allergies or an increased number of such allergies

* inadequate detoxification as indicated by lab tests

* low glutathione levels as indicated by lab tests

* impaired methylation - metabolic imbalance. Methylation is the modification of heavy metals within the body, regulation of gene expression and protein function.

Nutritional Products That Support A Healthy Immune System:

* zinc

* vitamin A

* vitamin C

* vitamin E

* selenium

* beta glucan

* co-enzyme Q10 or idebenone

* n-acetyl cysteine

* colostrum - found in breast milk

* super cranberry extract

* garlic

* olive leaf

* goldenseal

* reduced l-glutathione, dimethlglycine or trimethylglycine

Physical Sings of Problems with Gluten and Casein:

* constant craving for gluten and/or dairy foods.

* pale face

* black rings around eyes

* red ears. can be just one

* bloated stomach

* excessive thirst

* poor sleeping habits

* behavioural problems

* diarrhoea

* constipation

* excessive wind

* inability to feel pain.

Urine analysis can be done to see whether the relevant peptides are present, which would indicate the body is unable to process gluten and casein properly.

Symptoms of Withdrawal:

* stomach cramps

* diarrhoea

* hyperactivity

* aggression

* depression

* forgetfulness

* light-headedness

* poor concentration

* spots

* joint pains

* headaches

* trance-like state

* lethargy

* changes in sensitivities

Signs of "Slip-Ups"

* red ears

* changes in behaviour

* increase in autistic behaviours

* less eye contact

* hysterical laughing

* aggression

* hyperactivity

* bad temper

* changes in bowel habits

* changes in sleeping habits

USEFUL READING:

"A Useful Guide to the GF/CF Diet for Autism, Asperger Syndrome and ADHD" by Luke Jackson.

Luke is a teenager with Asperger Syndrome. He is one of 7 children, 4 boys and 3 girls. All boys have some form of Autism/ADHD and follow the diet. Also included are some recipes from his mum.

"Healing the new Childhood Epidemics" by Kenneth Bock and Cameron Stauth.

"Healing and Preventing Autism: A Complete Guide" by Jenny McCarthy and Dr Jerry Kartzinel.

those important areas.

2009-04-15T14:53:00.001+01:00

those important areas

HEALTH VISITOR:

mine was absolutely brilliant and really supportive. after sophie's initial diagnosis she rang up almost immediately and came out and visited me. she supplied me with loads of information and lots of relevant phone numbers.

WILLOUGHBY SCHOOL:

a life saver over the years, they have been a constant source of help and support, always willing to fight your corner, ringing social services, transport, LEA etc. they have worked miracles with sophie, i don't know where we would be without thier help and guidance over the past 11 years.

SUPPORT GROUPS:

wonderful. a great outlet for all your woes. no-one thinks you are going crazy as you are all in the same boat. some wonderful friend ships can be made, you laugh and cry together. the internet is also a good way to connect with other families. i have made some great friends on facebook, people i wouldn't've met otherwise.

FAMILY DOCTOR:

as helpful as he could be, though not specialist in special needs/autism. he developed certain strategies of his own to examine sophie when it was needed. he knew it was nothing personal when she bit his finger! understanding also about my battle with depression over the years, recommending counselling more than once for which i have been grateful.

FAMILY:

my parents have been very supportive over the years. my siblings however, are different. even now, i don't think they truly undertsands what it's like for us and sophie to live with autism on a day-to-day basis. i think they also resent the fact that our parents did so much to help.

FRIENDS:

i know it's part of life that some friends fall by the wayside as the years go by, but there are but a few childhood friends that i am still in contact with. even from ante-natal classes, i talk to only 2 people. friends i have made since are very accepting of sophie and she is of them.

OTHER CHILDREN:

we were a little concerned when we discovered travis was on the way as she had been the centre of our world for nearly 6 years. having younger siblings though has sophie the world of good. she has learnt that people will invade her personal space and she interacts with them very well. they are both aware that sophie has autism, we have told them in a way that they understand. travis is very protective of his big sister. woe betide anyone who pokes fun at his big sister!

RELATIONSHIPS:

one relationship ended just a month after sophie was diagnosed. at that point the bottom fell out of my world. i did begin to drink regularly but pulled myself out of it. my next relationship was short-lived and resulted in a termination. i was struggling to look after myself, let alone another baby. a year later, i met my current partner who is now my husband. we have been together for 10 years married for 2 - and have 2 children. travis is 8 and emily is 6. lloyd has always been completely accepting of sophie and loves her dearly. he is her daddy.

SOPHIE'S FATHER:

we parted ways before sophie was born. he came to see her at the hospital the day after she was born, and saw her again when she was 6 weeks old. he has not physically set eyes on her since. visitation was arranged via solicitors in 1996 but he never turned up. a brief attack of consience caused him to write to my parents shortly after her 2nd birthday but nothing came of it. he has not paid any maintenance for 10 years, and i asked the CSA to cancel the claim as she would never understand who he was. he's not made any effort to see his daughter and he has no idea that she has autism. i doubt he would know who she was if he passed her in the street.

MY MENTAL HEALTH:

suffered greatly in the early years, if it wasn't for my parents taking her in she would've ended up in care through no fault of her own. i was prescribed anti-depressants and at one point was temazapan as i wasn't sleeping (then again, neither was sophie). i became very withdrawn. i did manage to enrol on a college course and although it was tough going, i did complete it. i am still on medication today, i feel stronger but not brave enough to cope without them. my social confidence also took a battering but i am now proud to be out and about with all my children.

all these bloody feelings!!!!

2009-04-13T16:51:00.002+01:00

http://www.webjam.com/kaleidoscopeeyes

LEARNING TO SAY GOODBYE

2009-04-11T12:16:00.002+01:00

It wasn't until my father was diagnosed with prostate cancer in July 2005 that I began to realise that death was something that Sophie would have to deal with. There had been deaths in the family before, my maternal grandmother in December 1998 and paternal grandmother in January 2000. In all honesty, these were never explained to Sophie, she was simply too young and still very locked in a world of her own. That was my feeling at the time, but recently on coming down the stairs she has stopped and pointed at a small photo of her and Grandma Cope taken at her christening. She was literally a babe in arms but but whether she has any real recollection as to who the lady in the photo really is I really do not know.

After Dad's diagnosis, we knew it was terminal as the cancer was too far spread - in his bones - to eradicate completely. He carried on with normality for as long as he physically could and then a bit more. Stubbornness does tend to run in the family! He finally gave in and started to use a walking stick but would still walk wherever he could. He would also do what he could, and again a bit more with and for Sophie. It's fairly safe to say that Sophie was the apple of my dad's eye, firstly because I was a single parent when she was born and dad was the male role figure in her life and then when she was diagnosed he became fiercely protective of her. He still is now only he watches her from on high. This connection with his granddaughter is something my siblings found difficult to understand - and probably still do - in some ways they were probably jealous of it but their home situations were completely different to mine and if they were honest with themselves and let the jealousy subside they would know that dad would do exactly the same for them had their situations needed it. Anyway, my relationship with my siblings is a story for another day so lets carry on.

Dad never learnt to swim, but he was always the one who took Sophie for a paddle or sat by the edge of the swimming pool when on holiday. He would spend hours digging holes and building sandcastles with her on the beach, I'm not sure who enjoyed it more!

We told Sophie that Grandad was poorly and got tired, which she seemed to accept, it was dad who would insist on getting down on his hands and knees to play with her and then spend an hour trying to get up again. She became very gentle with him, when he used to go for his much needed afternoon nap she used to occasionally peer her head round the bedroom door just to make sure he was okay. Neither mum or dad refused Sophie a weekend visit, even towards the very end. He would peel and part bake potatoes - knowing she liked fried potatoes for breakfast whilst there - and always make sure the heating was on in her bedroom so she wouldn't get cold. When he became virtually bed-ridden, he would give mum the instructions to make sure all was ready!

Sophie truly loved her grandad, anyone who says autistic children cannot express feelings is talking rubbish. Sophie may not 'know' what love is, but that is what she felt. You only had to watch them together or look at the photos to see.

About a year before dad passed away, we had also prepared Sophie's brother and sister for the inevitable. We explained that cancer was like having nasty bugs in your body, that ate away at all the good bits, that the doctors could give you medicines to slow them down or even get rid of them, but because grandad's bugs had got into his bones they wouldn't be able to get rid of these ones. Travis asked the question, "will grandad die?" and we told him unfortunately yes, he would. The doctors could try and slow the bugs down but there would come a time when grandad would simply be too tired to fight them and that one day the bugs would win.

It took 2 weeks from when the doctor told us the end was in sight to when dad lost his fight. He was bed-ridden and had 24 hour nursing care. He was on a continuos morphine drip and drifted in and out of being lucid. I rang mum every morning and I popped round everyday, his bedroom became like a hospital wing, carers, nurses, doctors etc, there was always someone there. I took Travis and Emily round one day after school but not Sophie. The scene truly would've upset her. Her brother and sister were able to ask questions but Sophie's inability to do this would've caused her frustration which in turn I believe would've upset my dad.

On the day he died, I wasn't planning on going round, as the day before he had seemed quite upbeat, but my mum rang me to say he hadn't had a good night and his breathing was shallow. I went round in the car. My two older sisters were there, my mum had left messages for my younger brother who was on his way. Dad wasn't awake, his breathing was like a bag of marbles being shook up and down but the doctors wouldn't give him antibiotics for it, they knew what was coming. We drank cups of tea one after the other, we even managed a few laughs, but then the rattling stopped and we stood in the room and looked at each other. Mandy - she's a qualified nurse of over 25 years - kept an eye on his pulse, Carol - the eldest - stood in the doorway and mum sat herself in the chair next to his bed. I stood at the foot of the bed. mum gently took hold of dad's hand:

"It's alright love," she said " the girls are all here, you can go now." and he did. We all looked each other, Mandy checked his pulse again and nodded her head.

The children were all at school, but Lloyd and I knew we would sit them all down when they got home. Emily just looked bewildered, Travis wanted cuddles. We sat Sophie down at the dining table and told her that grandad had been very poorly and gone to live with the angels in heaven. I used the makaton sign for heaven and she gave me the thumbs up.

The first few times she went to mums after that she would check the bedroom but soon realised that grandad wasn't there anymore. A grief counsellor advised me to get the children to make a memory box, that they put in anything that reminded them of grandad. We had few of his possessions in there, some photos and the kids drew pictures that they put in aswell. For Sophie, i pulled out all the photos of her and grandad i could find and put them into an album of her own that she could caryy around with her and look at whenever she wanted. She has a photo of her and grandad on her bedroom wall that we put in a frame. It was taken a matter of months before dad passed away, they are sat on mum's settee and they are rubbing noses, smething Sophie sometimes does instead of kissing. She does occassionally pointed at it and stroke it, as she does the ones in the living room.

I've no doubt she misses him, but one things for sure, she will never forget her Grandad.

A Brief Summary

2009-04-06T18:30:00.003+01:00

The following piece i originally started work on when I was asked by the local college to speak to some of their students on life with a disabled child. I don't mind telling people my story - I wouldn't be doing this otherwise! - but it was less than a year on from Sophies' diagnosis so it did feel at times like the blind leading the blind but anything to raise awareness. I used as a prompt during my presentation and gave copies out at the end to the students. There are other things I wrote down to use as well but i just thought this would be the easiest one to start with. When I found all my papers today - admittedly they were a little dusty - I realised it had been just over 2 years since i had put anything to paper. There are some people who would say it's best to start at the beginning but it doesn't always work like that for me, if I get an idea for something that happened last week then I will do that first so please bear with me if reading my story reminds you of reading 'The Curious Incident of the Dog and the Night-Time' by Mark Haddon. For those of you that haven't yet read it I highly recommend that you do. Anyway, back to the story!

SOPHIE AT A GLANCE.

Sophie was diagnosed with mild kidney reflux at 10 months of age.

Sophie spoke several words at 16 months & would ask to go "wee wee".

Sophie recieved the MMR jab in October 1996. This had been delayed due to Sophie having a bad cold.

October 1996, a family holiday to USA. Relatives were impressed with her good behaviour and speech.

First began to notice real changes in March 1997 (though in hindsight they probably started as early as December 1996.). Severe temper tantrums were followed by a deterioration in speech.

She became very withdrawn and isolated, eye contact was lost.

Potty training came to a very abrupt end.

So began a series of tests - auditory, urinology and blood. She had a CAT scan followed by an EEG, which took place at Addenbrookes.

Appointment with Clinical Medical Officer who then referred her to an Educational Psychologist.

First appointment with a Speech and Language Therapist.

All tests came back either negative or normal. She'd had no contact with infectious/contagious diseases (chicken-pox came later). Through observation by the Peadiatrician and the test results, Autism was the conclusion. Referred to Child Psychologists and back to Clinical Medical Officer.

Diagnosis was agreed and confirmed by the Child Development Unit at Peterborough Hospital. February 1998. They wrote to Educational Psychologist and Clinical Medical Officer.

June 1998. Sophie began part-time at Willoughby (Special Needs) School. Regular reviews along the COPPS procedure began. She also attended 2 local mainstream play schools/nurseries.

Appointment with Clinical Medical Officer.

Attended a tribunal to be awarded higher rate of care component of her DLA.

Medical took place at school with Clinical Medical Officer, also to be used as part of Sophie's Multi-Disciplinary Assessment.

July 1999. Sophie had a tonsillectomy and her adenoids washed. Gromits were not needed. Her general health improves greatly.

August 1999, she started on the MENCAP summer playschemes.

Sophie received her first full Statement of Special Educational Needs in October 1999 and began full-time at Willoughby .

First trip to local NHS dentist. Not a success.

School began to introduce Sophie to the PECS procedure to aid her communication.

She finally became dry during the day in February 2000. A celebration was had by all!

Awarded the higher rate of mobility component of DLA in August 2000. To be reviewed every 3 years.

Her younger brother - Travis John Wells - was born April 2001. She seemed to take this upheaval in her stride.

July 2001. Riding lessons began.

Intermittent vomiting began. GP prescribed Gaviscon. Referred to paediatrician as were also concerns over Sophies' bowel movements. Switched her from cow's milk to soya.

Early 2002. Appointment with Peadiatrician re: vomiting and bowels. No action taken at this time as she is otherwise fit and healthy.

September 2002. Sophie receives two 5th place rosettes from the mayor of Peterborough for her part in Eastern Region Disabled Riding Special Olympics.

Told by Paediatrician Sophie had prolonged toddler diarrhoea, she should grow out of it. Could have a referral to Royal Free Hospital in London but we decline as we didn't any undue pressure placed on Sophie. We come to the concusion her bowel problem is all part of her Autism.

Sophie's younger sister - Emily Amber Rose Wells -born. The latest and last addition to our family. February 2003.

Sophie is assessed for the provision of augmentative/alternative communication device. A tech-scan 32 is eventually supplied.

Annual Review 2004. A decision is made by school to ask for one-to-one provision for Sophie. She seems increasingly frustrated and her behaviour is worrying. The panel at first refuse funding but after appealing they agree to fund 10 hours a week.

Experimented with cutting out additives, colours and preservatives from her diet. Also gave her fish oils and multivitamins. She tolerated it all but it didn't seem to make any significance difference. Her bowels do improve only slightly.

December 2004. A visit from Sophie's class teacher and headmaster concerning her behavioural problems. She's had several violent - but not vindictive - outburts at school. Tables pushed over and large heavy objects sent flying. An 'Issues & Actions' sheet is put into effect.

May 2005. Meeting at school with headmaster and Educational Psychologist concerning behaviour. Am now very concerned as I am no longer able to physically restrain her. She has hit out at me on more than one occasion and only her father can control her at home. It's upsetting for me to realise this. At school she does respond to Adam's (headmaster) voice.

Sophie ends the spring term with achieving Level 1 in ASA National Swim Awards through lessons at school. Swimming is one of her passions.

After the local hospital closes it's dental clinic, we manage to get Sophie registered with a local NHS dentist. We are apprehensive but the visit goes without a hitch. She now goes regularly without problems but Daddy is always on hand just in case!

Annual Review 2005. We request an increase in Sophie's support due to her behavioural problems. This is denied, despite the risk Sophie now poses to herself and those around her. We do wonder whether hormones are contributing to her outbursts.

With the panel refusing to amend Sophies' statement school decide to finance the increase themselves. She now has support 3 and 1/2 days a week.

The 'Team Teach' approach is implemented in school to help control her outbursts.

Sophie begins to go to bed at night without nappies. We have a good success rate at the first few attempts and this continues to be the case. September 2005.

Due to financial straits we sadly have to put an end to Sophie's private riding lessons.

March 2006. Sophie has her yearly medical at school with the Community Peadiatrician. We dispute several points in the final report to no avail. Her headmaster tires to contact the Peadiatrician as well but with no success. As a result we decide not to let her undergo any more medicals and have her removed from Paediatrician list. If neccessary we will visit our own GP.

Sophies' behaviour improves but there are still off days.

Annual Review 2006. Sophie is one of the few children at her school still under the direct supervision of a S&LT therapist. Her statement is amended accordingly due to therapist's reccommendations.

School begins to prepare Sophie for the transition into Upper School which she seems to accept with few problems.

Sophie has her first holiday without the family, a week with the local branch of Red Cross, supported to two young female volunteers. Daddy is very apprehensive but it turns out she had a wonderful time. She still has the photos on her bedroom wall.

After an incident during walkabout with her class, safety procedures are brought in to ensure it does not happen again. On the whole outings with her class are successful. She enjoys feeding the ducks and going to the coffee shop.

Sophie does well by taking part in the Harvest Festival and Christmas Carol concert. This is something she's had great difficulty with in the past.

Her first Parents' Evening for Upper School is good. They say she has adapted well and encountered no real problems.

January 2007. On the day she's due to go back to school after Christmas, Sophie has her first period. She looks curiously as I help her with her sanitary towel but otherwise seems unperturbed. Something else she seems to have taken in her stride. We tell her she's now a young lady. She laughs.

We start and continue to re-iterate the importance os life skills for Sophie. This is heavily mentioned every year at her review. Communication is also a big issue.

As Sophie grows in age as well as size we become increasingly concerned over her physical outbursts. I ask our GP for a direct referral to Dr Wozencroft from CAMHS(Children and Adolescents Mental Health Services). June 2008.

We have our first appointment with Dr Wozencroft and Jan Dawson, July 2008. Jan agrees to do an in school assessment of Sophie at the beginning of the autumn term. We are advised by Dr Wozencroft to ask school to refer Sophie to the Occupational Therapist Jane Horwood, who also happens to be his wife. She is a private OT but school have paid for her to come to school out of their budget. OT's in the South of Lincolnshire are like gold dust!

We take Sophie to our GP on the advice of Dr Wozencroft to see about having her prescribed the contraceptive pill. August 2008. It does help to control her moods in respect to her monthly cycle.

The world of Sensory Processing Disorder is opened up to us. Jan explains it in laymans terms and suddenly it feels as is a light has been switched on. Why has no-one told us sbout this before? A lot of Sophie's behaviours are explained but they still need to be kept under control. October 2008.

We have regular reviews with Dr Wozencroft and Jan Dawson every 3 months.

Jane Horwood observes Sophie in school and sends us her report. We meet face to face to go through it. A lovely woman. Gives us ideas and some strategies. March 2009.

A MOMENT OF CLARITY

2009-04-05T12:57:00.000+01:00

The above title refers to the moment as i lay in bed last night thinking how i could reach the world with the story of my daughter.

since her initial diagnosis 11 years ago, i have read many books and articles on autism and it's associated conditions, but rarely have those books been written by the parents of girls with autism or by the girls themselves. I have read 2 by the wonderful Donna williams and another 2 by Clara Claiborne Park whose daughter was diagnosed back in the 60's when just to get a diagnosis of autism was a rarity as so little was known and understood about the condition. i have heard of Temple Grandin of course but have yet to read any of her books.

When people/parents have been interviewed about the condition on t.v or in the media they seem to have an immediate advantage over the rest of us whether it be financially or professionally. They are able pay for various treatments or investigate them in a way that the average joe can only dream of. i don't begrudge them , not at all, but i do envy them.

when sophie was diagnosed i was a single parent. sophie's natural father has not physically set eyes on her since she was 6 weeks old and he has no idea of the life she leads. i was working full-time at the time but after about 3 months of juggling testing, doctor's appointments and referrals, i felt my place was at home with my child. i have been by her side ever since. she is my inspiration and i am her rock, whatever happens i am always here.

i have since met and married my husband and had 2 more children. my husband is sophie's daddy and the only daddy she'll ever need.

Sophie has severe autism with behavioural problems. she is non-verbal (she did have speech early on but had lost it completely by the time of diagnosis.), relying mostly on vocal noises and a few makaton signs. she has attended a special school since june 1998, 4 months after her diagnosis. they have worked wonders with her over the past 11 years but we are all aware she still has a long way to go. now, as she enters her 14th year we become all the more aware of how life will continually throw her challenges. Transition will rule our lives for the next 5 years.

i wanted to be able to read of a family like mine, with a daughter who was also severely autistic, i know i can't be the only one in this big wide world and it would be nice to know i am not alone. through joining facebook i have met many mums from all over the world whose children live with autism and/or it's associated conditions but none with a story quite like mine.

for the past few years - certainly since sophie has entered puberty on a grand scale - i have thought about my own story down for others to read. my husband at one pint told me ' if you can't find a book, then write one, you're perfectly capable.' but as ever, life throws you a whole bunch of lemons: my father was diagnosed with and subsequently died from prostate cancer which sent me into a deep depression for a year, but now, here i am.

the word kaleidoscope is the name myself and a few other parents have given to a local support group for parents and children with all disabilities. i thought it appropriate: a kaleidoscope is ever changing it's colours and patterns, much like our children.

so there i was laying in bed last night, thinking about nothing in particular but everything at the same time: i needed a name for my story. again kaleidoscope came to me but it needed that little bit more. it was then i remembered the old beatles' classic, Lucy In The Sky With Diamonds which has the line 'the girl with kaleidoscope eyes' and that was it. these five words were perfect for my daughter, she looks at the world with a pair of eyes that see things i can only imagine, and with all her sensory issues i couldn't think of a better description.

this is only the beginning of a long, continuing story but one i am determined to tell. not just for sophie, but for all the other families out there whose daughters are affected by this life-long condition. i hope you have read this, you won't be bored and will come back for more. tell your friends, tell everyone! thankyou.