Running with Sasha. A story of a very special child of 2002 – the birth year of Ivan, the son of the UK prime minister

SAsh2 Will you send your child's story? Peter Limbrick is collecting stories of children born in 2002. Please click here to see why.

Running with Sasha

'As for the future, let's say it is quite bleak. Once my husband and I are too old or incapacitated to look after our son, he will end up in the institution. Or maybe in the street?'

I should have probably called my blog post "Running after Sasha", as it is closer to truth. Sasha's happiest moments are when he runs along the beach, like a seaside Forrest Gump. He is feeling free: free of conventions, restrictions, his own worries, fears and limitations, free of frustration and angst, all the anxieties evaporate, he is enjoying every second and doesn't care whether we follow or not.

Years ago I created a scrapbook layout called "Define Me" for one of the Autism Awareness campaigns. I have taken my old scrapbook out the other day and looked at it. What I said about Sasha then, still applies these days. If I were to define my son, I would use the same words: beautiful, brave, simple, complicated, kind, impatient, giggly, frustrated, not talking (or non verbal) and loving. Yes, these words describe my son to a T. I would also add such words as vulnerable, quick-tempered, anxious, affectionate, and a gentle soul.

When Sasha was born on a cold March day in 2002, I thought the hardest part was over. I had a very exhausting 36-hours-long labour without much of a progress, and as my child was showing the signs of distress, I had an emergency c-section. Finally holding him in my arms, I imagined that from now on everything would be fine. And why wouldn't it?

Sasha was a bouncy baby who reached all his milestones in time. He started talking quite early, saying Mama before he was six months old. Social, chatty, loving company and full of beans, Sasha's personality was shining through. I was worried about the possible side effects of the multiple vaccinations, but when we discussed our fears with the pediatrician (we lived in the States at that time), he was reassuring us, saying that there was no way Sasha had any signs of autism, that he had a perfect eye contact and that we shouldn't even hesitate about vaccinating our son. We postponed the vaccinations, but as we were due to go back to the UK, the doctors finally convinced us that it would be in Sasha's interests to have all the jabs done before we left.

For years afterwards I wished I could turn the clocks back to that moment and listen to my own heart. Sasha was very poorly after the vaccinations (there were 4 jabs with 9 vaccines in total, a killer combination). I cannot say that he started to regress immediately, but after that something has changed. First he stopped acquiring new words. The health visitor and Co were all reassuring us: he is a boy, boys tend to develop speech later. Then it was the speech therapist version: "You are a multi-lingual family, you confuse your child with your different languages. Stick to just good old plain English. In time he would start speaking all the languages." Friends joked: "Einstein was a late talker too, and his Mum must have been worried as well". But it wasn't just about acquiring new words, he was losing the vocabulary he had, slowly regressing into simple vocalising without any meaningful words. At the age of ten and a half, Sasha is completely non verbal. I haven't lost hope that he would speak one day, but I have also prepared myself to the scenario that he might never speak again.

When Sasha was 3, we went through a week of developmental and behavioural assessment at the local hospital. After a week of talks to the speech therapist, child psychologist, pediatrician and many more specialists, there was no conclusive diagnosis. They said Sasha was moving in and out of the autistic spectrum, and that we should return in a year's time. Somehow having no diagnosis felt reassuring to me. I thought surely if he had autism, they would have told us so. A year later, they did find that Sasha's condition was indeed autistic spectrum (though they used the term quite cautiously). They thought we would need a diagnosis to help getting Sasha statemented.

My world collapsed at that point. Not my child surely. They must have made a terrible mistake. Just look at my boy, he's so loving and affectionate. I never had a problem with Sasha's eye contact, he always responded to me and his father. It hit me hard. There were days when I didn't have a will to live. I would walk in the Blenheim Park, and at times looking at the murky waters below the bridge, thought how easy it would be to stop my anxiety and pain. I was truly depressed. Only the thought that my husband wouldn't be able to cope on his own, looking after Sasha, and that Sasha would end up in an institution stopped me from doing anything drastic. I went to see the GP and asked for help.

Everything is so slow in the NHS. The referral was sent, and I had to wait for more than six months to see the counsellor. Overall, I had six sessions. Did they help? To some extent, but by then the worst depression was over, as I tried to help my son, who was finding it very difficult to settle in the local nursery.

It was a standard nursery for children without any problems. The staff were kind but not trained in working with children with special needs. Parents were mostly aloof and would hardly say Hi at the gate, probably worried that our son's condition was contagious somehow. I know I felt like screaming at times: It is autism, not a plague. We lived in a small town of Woodstock, and having a child with a disability made us feel like outsiders.

Finally Sasha got a place at the nursery in the special needs school in Witney, and he had to commute by the school bus. We decided it was best to move closer to school. I don't regret this decision. Moving from a posh little place to a more diverse and bigger place was a good move. Having a special needs school in town makes a difference. You can often see people of all ages with special needs who are walking in town, accompanied by carers, and these people (or as we call them "our people") are assimilated and accepted by the locals.

Now that Sasha is 10, he is more aware of his condition and of what he is not able to do. When his younger brother is talking, Sasha is torn between feeling frustrated at his own inability to talk and annoyed with his brother for being able to say things. At times I could almost see a pride in his eyes at his younger brother's achievements. In the rare moments of affection he kisses Eddie on the head, which brings Eddie to the point of near-ecstasy, because Eddie worships his big brother.

Life is certainly more difficult now, and I am waiting with trepidation the time when Sasha becomes a teenager. Being a teenager is not easy even when you are a neuro typical person. When you have a disability, it is tenfold harder.

Nights. Who invented them?! Autism often comes accompanied by a sleeping disorder. Sasha would wake up at 3am, and then none of us could get any sleep. The nights could turn into the noisy jumping on the bed and door-slamming, loud humming and stimming.

When my husband is away, I do not dare to venture out with both of my boys. I am not able to run after Sasha in case he bolts away from me, while dragging Eddie along.

Holidays are always tough. Our extended families live too far to help. We have the local charity Guideposts running play activity days during holidays, but with all the budget cuts they do not have enough money to offer places to everyone who applies. Last summer from the 25 days that I requested, we have been allocated just 11 days. The demand is much higher than supply.

Schools like Sasha's have to beg parents to collect money to keep the school minibuses running. The school minibuses take children with special needs on trips to help them to socialise and explore the world.

Sasha was born in 2002, the same year as Mr Cameron's son Ivan. David Cameron who is our local MP was at the opening of Sasha's school, and when he became a Prime Minister, I was hoping he would be more understanding towards people with special needs and disabilities.

We are just an ordinary couple, not high profile. We don't have extra help with nannies. Budget cuts to disability services affect us big time. As for the future, let's say it is quite bleak. Once my husband and I are too old or incapacitated to look after our son, he will end up in the institution. Or maybe in the street? Who knows what will happen with the social care budgets?

This post has been written to support The Very Special Children of 2002 campaign. I have accentuated the difficulties we encounter to show the Prime Minister how the ordinary families with children who have special needs live.

I also want to add that Sasha is very much the centre of our Universe and that we love him unconditionally. He is a wonderful boy who has taught us many things about ourselves and the world around.

KIDS launches free eLearning for schools wanting to include disabled children.

KIDS has launched a new eLearning package for schools, aimed at ensuring an inclusive welcome to all disabled children regardless of their impairment.

KIDS is the charity that works with disabled children, young people and their families. As part of the 'Delivering Inclusion' project, sponsored by the Department for Education, KIDS has created an eLearning suite aimed at ALL school staff, from non-teaching assistants and lunchtime supervisors, through to SENCOs, teachers, head teachers and school governors.

Titled 'Creating an Attitude of Inclusion', this eLearning provides examples of best practice and professional guidance to support schools in ensuring that they foster a supportive environment, so that disabled children and young people can learn alongside their non-disabled friends and peers.

This work was developed in response to the Department for Education's Green Paper Support and Aspiration: A new approach to special educational needs and disability (DfE 2011)

'Delivering our vision depends on every teacher having excellent knowledge and skills. However, at present teachers' initial training does not always equip them with the tools to identify and meet a broad range of needs. Children and young people have told us that they find it frustrating when those who help them in school or college have an insufficient understanding of their conditions or needs. Teachers tell us that understanding different types of SEN helps them to teach effectively and that more could be done to make specialist training available.' (page 59)

Anyone wishing to access the free eLearning can do so by creating an account here: http://elearning.kids.org.uk/login/index.php

Introduction to visual impairment in children and young people who have complex needs:

Eye_close_up This course will help you to understand how the visual system works and what happens when something goes wrong with it.

There will be practical opportunities for discovering some of the challenges that face children and young people with complex needs who have little or no sight.

Who should attend?

Special education professionals, including teachers and teaching assistants.
Health professionals including therapists and learning disability nurses.
Parents and carers of children with additional needs.

Learning objectives

To explore how the visual system works and the main functions of vision.
To identify some of the conditions that can affect vision in children.
To explore cerebral visual impairment (CVI) and its impact.
To engage in practical activities to experience some of the main effects of visual impairment.
To identify some of the main ways of meeting the needs of learners with visual impairment (VI) and complex needs.

Course presenter

Lucy Naish and Judy Bell, independent consultants in visual impairment and complex needs.

Date and time: Tuesday 20 November 2012, 10.30am-3.30pm

Venue: RNIB Pears Centre for Specialist Learning, Coventry

Cost: £95 or £50 for students (includes lunch and refreshments)

Book today! Visit rnib.org.uk/pearscentre or call 024 7636 9500.

Sarah's story. Her mother has hopes of David and Samantha Cameron

sarah1hs Sarah was not born in 2002* but her mother wanted her story to be heard. Sarah died in 1981 when she was 10, at the same age as Ivan Cameron. As a bereaved parent Sarah's mother has hopes of David and Samantha Cameron.

*Peter Limbrick is collecting stories of children born in the same year as Ivan Cameron, the UK prime minister's son. Click here to learn more. If you can, please help spread our appeal for stories.

This is Sarah's story:

Like David and Samantha Cameron, I had a child who died aged ten. My heart went out to them when I heard that they had lost their son, Ivan. Perhaps, like me, and other parents who have experienced such an unspeakable loss, they will be caught unawares sometimes. A tune, a place, a fleeting thought about what made their child happy (or sad), a taste they hated, a photograph, can trigger an almost physical rush of emotion – overwhelming grief, tempered by the joy of having such a dearly loved child even for too short a time, and a mixture of anger and despair that such a loss is possible.

By the age of ten, a child has survived the fragility and potential for being cut short pre-birth, the buffeting and drama of being born. In our family, hazards like measles, or learning to cross the road, had been successfully faced and negotiated. We had ten years of loving, communicating with, and enjoying the company of a bright, conscientious, kind and funny little girl, getting to know her personality, the hopes and aspirations she had for herself as well as those we had for her.

sarah1ffb

When she was nine, something happened to Sarah. Nothing you could immediately put a finger on. She was tired and listless, and asked to go to bed as soon as she came home from school. Raised glands and pains in her neck prompted visits to the GP – several visits in fact – but he was dismissive and a bit irritated. He put it down to 'growing pains' and a fussy mother. It was only with persistence and finding a specialist ourselves that Sarah was eventually diagnosed with a rare form of bone cancer.

She died a year later. By then we had experienced the problems of trying to access treatment at a hospital miles away from where we lived, and the difficulties of transporting a quadriplegic child who could not sit in a car. Sarah was the middle one of my three daughters. Her sisters needed to be at school, go to Brownies, or have Mum or Dad help them with their reading instead of being 90 miles away waiting for the result of yet another biopsy. Family life was fragmented, and there was no-one to plug the gaps. The services that were available didn't match what we needed most.

Sarah was in and out of hospital, frequently and unpredictably at first, and then regularly for radiotherapy and chemotherapy. Kate and Anna often came home from school to an empty house and yet another note saying "Had to go back to hospital, please go to Jenny's (or Eunice's, or Nicky's) for tea. She knows you're coming." When Sarah came home from hospital, as parents we had too little sleep because one of us had to sleep in Sarah's room where we could use the suction machine when she had breathing difficulties. We didn't have a Social Worker, or night sitters, and the special refuse collection for incontinence pads and other medical waste took so long to set up that the van came for the first time on the day after the funeral.

Fast-forward 31 years. Sarah died in 1981. For the rest of the family life goes on, changed and challenged by the experience and the knowledge that nothing will ever be the same again. For the last ten years of my working life I worked in children's hospices, and as Director of Support Services in a charity that helps families affected by a disabling degenerative genetic condition. This is the reason I am writing this account. My personal experience as the mother of a ten year old who became severely ill, disabled, and died, was over thirty years ago. But I know from my professional experience that so many of the problems we faced as a family all those years ago are still problems for families now. I keep hearing my own story repeated with little variation.

One of the key issues is the need for GPs and other health professionals to listen to what parents tell them. Almost all the accounts I have heard about other families' experiences show how distressing it is for parents to feel that their anxieties are being dismissed. Parents may not be able to identify what is wrong, but they are usually the best people to recognise and describe change.

The physical and emotional drain on parents caring for a child who is chronically sick or disabled impacts upon the whole family. Lack of sleep, the physical demands of care tasks as children get bigger and heavier, and the consequences of stress and anxiety on all members of the family group, have potentially long term effects. Joined-up, needs-led services might help to mitigate the damage.

The impact having a child chronically sick or disabled child has on family finances is significant. This is a common experience, and well documented. Changes in legislation, for example with regard to benefits, and constant cuts in services, are making things worse, not better, for many families.

I hope that when David and Samantha Cameron are in my situation, thirty years on, they will have grown -up children who have coped with and adapted to the loss of their sibling; that the love and joy they experienced in the short time they had with Ivan will outweigh the grief they feel about losing him (even though the balance seems precarious sometimes). I also hope that, in common with many parents of chronically sick or disabled children, or whose children have died, they will do their utmost to try to improve the lives of parents and families who are going through similar experiences now. The opportunity to help make life less difficult for others is one of the few good things that can come out of a generally sad and negative experience for parents who lose a child.

Sarah2b If you want to contact Sarah's mother please e-mail This email address is being protected from spambots. You need JavaScript enabled to view it.

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