1

A Bump in the Road

Dylan doesn’t attend school.

He is home educated using a ‘differentiated curriculum to meet his specialist needs’.

His younger brother and sister attend our local mainstream primary school. Dylan was whooshing off on his scooter on the way home after dropping them off when he hit a bump on the street and tumbled off the scooter and fell on the floor.

Now Dylan is a cutely clumsy kid. He trips all the time and has little spatial awareness but despite this he stumbles rather than fully falling. Today he stacked it; one of those falls that makes you suck your breath in hard. Not nice.

Dylan quickly got up to come back to see me. His face showing the shock at what just happened and not really knowing what to do with himself. He showed me his wet muddy palms and I checked for cuts and bumps to find all was intact. Then, as soon as I was confident he was uninjured we got out the IPad. See Dylan learns in the here and now. It’s no good telling him about something hurting unless he can see it or feel it. He’s mind works too literally to understand the idea that something may hurt. Until it does.

So I leapt at the opportunity for this real time event to expose more language.

‘What happened Dylan? What did you do?’

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“You fell over, did you hurt yourself?”

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Some hand over hand prompting was needed as was some on the spot talk button formation for words that didn’t yet exist but we did it. By being able to talk about what happened he didn’t even cry.

 

Once home we again talked about what had happened with him easily finding the buttons to relay the event of the scooter and his sore hands. He could recall what I was asking, he could remember to navigate the IPad to find his new buttons and he answered me.

All in all, a good morning

 

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6

He will be okay

 

 

Everyone’s out in the garden, the little ones are making up a dance routine and Dylan goes over and discreetly knees his sister in the side. It’s not an aggressive move, don’t get me wrong it could knock over a small child but it’s not as violent as it could be. His sister carries on playing – turning a blind eye to her brother’s bad behaviour. Not me.

‘Dylan, come here. Why did you push your sister? Get your Ipad, what’s wrong?’

Dylan gets his Ipad, whining and groaning, obviously not happy and at risk of spiralling, spiralling up and out, up and boiling over into fury, grabbing at himself, the pitch of his whine becoming higher and higher, more strained at his at his inadequate attempt to suppress his feeling, to supress whatever it is that he needs to say, to shout about, whatever it is that’s swimming around in his head causing a whirlwind in his mind with no opening or outlet to be released so it continues to swim and swirl, continuing the confusion, the upset, the fury.

He uses all of his focus for a couple of seconds to block out the confusion of emotions and tenderly pressed the buttons.

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‘Sad? You feel sad Dylan?’ Dylan has never told us how he’s feeling before. We often ask him how he is feeling but he just doesn’t have the words to tell us.

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‘You feel angry?’

His little face looks at me, almost studying for a second – Did she? Did she understand me? He looks back at the Ipad and continues to press the buttons

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I feel my throat tighten, choking me ‘What hurts Dylan? Tell me, please?’

He beings to swipe through the buttons, looking intently for the next option that he needs. He glides through the array of pictures that I have clumsily placed on the screens for him. No pattern or purpose to them, just words that Dylan has been exposed to previously and we have feverishly hoped that he would retain and use if he ever needed to. He begins to select more buttons.

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‘Your head hurts?’ I ask and Dylan looks up at me with pain in his eyes, sad eyes and then he find the buttons to continue.

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And there it is. He feels excluded, he wants to play. His aggression towards his sister was because he wanted to play with his brother. I’m astounded but also saddened. Standing there at the back door holding the Ipad. A simple tablet which has just shown me a chink of insight into the personality of my beautiful boy, his feeling, his isolation, his sadness but has also shown me the ability for him to emerge out of it. My eyes prick as his sibling hear Dylans requests and take turns in kicking the football to each other, gently encouraging Dylan to play and share with them. And for the first time ever I feel a sense of calm. He talked; with intent, with purpose and he made things better for himself. I realised then; He will be okay.

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.