Somewhere ‘on’ the rainbow

Having a child with autism has been a rollercoaster of a ride! When he was diagnosed just before his 3rd birthday, it came as a relief. Nobody wants to have a child who is autistic, but it was like a weight off our shoulders to have an explanation and a label. It meant that we could start to access support for Charlie, that without a diagnosis we would not have got.
I consider ourselves lucky as far as this goes… I often speak to other parents who know their child has difficulties to some degree but have to fight to get any sort of support for them.
Charlie is classically autistic. His official diagnosis is autistic spectrum disorder or ASD. It took me a while to actually say ‘he’s autistic’ somehow it felt less dramatic just to say he was on the spectrum!
I love that word ‘spectrum’ I visualise a rainbow with Charlie sat about a third of the way along its bow. I realise that things could be a whole lot worse for Charlie, that he might have never developed the ability to speak or communicate, that he might not have had that wicked personality that will see him rolling and crying with laughter at ‘you’ve been framed’ or the sensitive and caring little worrier that I see when he is around his young cousins or the loving little boy who links my arm when walking. And for that I thank God.
From the moment he was diagnosed the support kicked in. Charlie attended the child development centre at Poole hospital. Here he was in a class with 3 other children like him. He had play therapy with the lovely Mary, speech and language therapy and paediatrician input. The parents sit in an adjacent room with a one way mirror so we can observe the children. He got 1:1 support at nursery and we had a portage worker who came to the house once a week to work on his communication skills. During this preschool year we got him statemented and plans in place for his transition into mainstream school.
I’ve never regretted that we took this path… Yes with hindsight it was not the right place for Charlie, but I would have always wondered ‘what if’ if I hadn’t have tried. They adapted his timetable and he had full time support and, for a year and a half, him and Mrs Morley had a lovely time together! But it wasn’t ‘inclusion’ and Charlie failed to meet any of his targets. So with a heavy heart I organised his transfer from St Marys to Winchelsea Special School. Its fair to say that I was really unsure if this was the right place for Charlie. At the time the future of winchelsea was under review, with a temporary head in post and faced with possible merger. The last thing I wanted was more upheaval and the anxiety that goes with change. I considered and applied for other schools outside of Poole, but was unsuccessful due to catchments and already being oversubscribed, so winchelsea it was. I’m a firm believer in fate – it it turned out that  Charlie thrived here… And the future of winchelsea was to be a positive one. It gained specialist status for children with autism and has a strong leadership team, excellent teachers – current and up to date on all the best possible teaching tools for children like Charlie. They are well supported by both their PTA and board of governors. They have sensory rooms, occupational therapy and salt all on site.

Along our journey we have stumbled across benefits and entitlements. Some we’ve heard other parents mention just in conversation, others I’ve found through hours of trawling the internet and occasionally things get sent home from school. Nothing is handed to you on a plate – no one says ‘your child is disabled – this is what you are entitled to’ I remember when I discovered that we should be claiming disability living allowance. Surely we’re not entitled to benefits? We both work and always have done – this was a completely alien concept to us! Why would I need to be paid because my child is autistic? I was even slightly offended at the idea! However claiming this benefit is the key to accessing opportunities and support – its the certificate, if you like, that says – I’m disabled. And, of course, it has helped fund Charlie’s obsessions and casualties!

I plan to take up this challenge one day… Its not gonna be easy but I can’t believe no one has done it. A document or website that says – your child is disabled – this is what you get!

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One thought on “Somewhere ‘on’ the rainbow

  1. Sue bryant

    Sara, those words you wrote are so poignant and full of honesty. Well done it moved me to tears…
    Xx

    Reply

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