4

Starting Out

Where to start…? it feels like we’re on the cusp of something exciting. It feels like anything could be possible and although hugely exciting it also feels terrifying.

Dylan was born in 2003, he is the eldest of three children and is on the more severe end of the Autistic Spectrum. When he was diagnosed age 3 we were the only people we knew with a child with Autism, we didn’t know what to expect, what help we could get and we ultimately placed out trust in statutory services to know what to do. Professionals, teachers, health visitors, specialist advisors. We trusted the professionals to know what to do and to help Dylan with whatever needs his Autism would bring. Dylan was quickly accepted to a special needs nursery and went onto a Specialist MLD (Moderate Learning disability) school. He spent 4 years in school with little progress; apparently this was to be expected, Dylan could not move further on with academic education, learn to read etc without verbal communication. Now aged 7 Dylan still could not talk.

After much soul searching and against professional opinion we removed Dylan from school on the search for something better, we turned our backs on the professional advice and low expectation and we ran, we ran for the hills! Dylan broke up from school for the Summer Holidays in July 2011, August 2011 we started a home ABA (Applied Bahvour Analysis) programme and his deregistration letter was submitted in the September 2011; Dylan never went back to school.

Fast forward nearly 5 years and Dylan has come on so well. He is still primarily preverbal in that he can’t speak/be understood. With puberty just around the corner he can become more frustrated and agitated but this is usually related to his inability to be understood due to his difficulties with communicating. He has recently been assessed and although ‘..demonstrates significant difficulties in line with a diagnosis of Verbal Dyspraxia’ it is not deemed suitable to give him this formal diagnosis alongside the Autism diagnosis. Don’t get me wrong, its not as if the kids *wants* another diagnosis but to have the label of verbal dyspraxia would enable people to understand the difficulties that Dylan has with verbal communication alongside his autism and not because of it. Makes sense right? Not in the eyes of the professionals, so as Dylans parents, we do what we think Dylan needs; even if the professional opinion is not in agreement.

So this is it, the something exciting. Its today, tomorrow, next week, next year, its as long as Dylan needs for the pieces to fall into place and for him to realise his potential.

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