Mind the Gap.

Running as fast as he could, with me in hot pursuit, Evan headed across the grass towards the elderly couple seated on the park bench..before I could reach him he took a sandwich from the picnic box by their feet, sniffed it and then unceremoniously tossed it over his shoulder as he sprinted past..

Evan was 3 years old…. the elderly couple were furious

It was around this time it was gently suggested to me that Evan was probably autistic.

 It was a massive shock.

I didn’t really understand what it actually meant.

Like many people the film ” rainman” pretty much summed up my knowledge of the complex developmental disability.

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 I certainly had no idea of what the implications would be on his childhood, his development or his life.

 I was quite defensive in initial appointments with the pediatrician. Confused by the accuracy with which he described Evan’s “short comings” I didn’t offer up any concerns other than lack of speech,quickly followed by my professional opinion as his mother that my sons hearing was obviously slightly impaired.

As the assessment process got underway and Evan spent his Wednesday’s at the child development centre being poked and prodded, I  reluctantly started to open up to the possibility that they were right.

 It was difficult not to.There was nowhere to hide as they reported back their observations.

 I clearly remember when he screamed the centre down the first time they tried to encourage him to remove his shoes and socks..I brightly smiled and explained ” he doesn’t like to be bare foot in new places..” as if that was the most normal thing in the world expecting them to nod and realise the error of their ways.

After a period of assessment over several Wednesdays Evan was diagnosed, then discharged.

No one explained anything. I was given no advice. No words of encouragement. No game plan.

Nor  did we get the “certifictae”of diagnoses I naively  thought he would receive, complete with wax seal and red ribbon..

So that was that.

I can see myself now almost 7 years later..I just sat there in my little car, my face pressed up against the steering wheel. I quietly sobbed. I then drove home.

A “spiky profile” they said..at the time I focused on the spikes that were age appropriate rather than those that fell around or below the 12 month mark.

I didn’t have any questions,I assumed that the “help” from this point onwards would be fourth coming and plentiful.

Of course it wasn’t

Evan displayed a precocious ability to read numbers from a very early age.He did not speak but randomly shouted out numbers and words he saw! I secretly thought he was a child genius..

 He was also hyperlexic- able to read complex words and sentences from a very young age, although his understanding fell far below where it should have been for a typically developing child. 

It cheered me up no end one day when Evan read an entire leaflet on Mortgages aloud in the bank in front of a mother that had been less than understanding..money can’t but those moments! She nearly fell over, I rolled my eyes with one hand on my hip and said “we have to hide the newspaper”

I laughed all the way home.

Not having any other children, I had no direct comparisons to make,I just quietly revelled in his brilliance and never understood the full gravity of how much harder and more complicated our life was (is)

I don’t think I ever considered the ” lifelong” part of the diagnosis and I have no idea why, perhaps it never sank in? It certainly never occurred to me in the early days what the future might have in store.

 The challenges autism has raised have sometimes felt insurmountable

All those little things that come naturally to children as they develop  have needed to be taught.

No one and nothing could have prepared me for the daily obstacles we were to face.

I was unaware of the impact Evans over sensitivity to smells, sounds and tastes would have on his ability to deal with everyday situations or how his  need for routine and overwhelming desire for sameness would restrict daily life.

I had never heard of smearing until it became part of our world.

It has always amazed me that Evan can vomit at the meer whiff of a banana yet can cover himself in his own excrement without batting an eyelid..

Over the years there have been some incredible comedy moments….licking the ample thigh of the black woman at the local pool and loudly saying ” ummmm chocolate” in a Homer Simpson voice, has to be up there in my top ten. ( the woman was fantastic about it and I was mortified!)

There has been a great deal of heart ache too,mostly created by “others”with stupid,uneducated,ignorant yet, well meaning comments…..”they all do that” is the one that makes me want to scream the most..but there is no point at all trying to explain..it would take too long and still the well meaning person would believe they understood exactly what life was like in our world.

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The education system..well that all but broke my spirit. I can  comment on the system as my statemented child was spectacularly failed and no one and I truly mean NO ONE cares. The complaints and appeal process so flawed that a solicitor specialising in SEN Law actually shrugged and said” schools will always get away with it.” when I explained our situation.

Life with autism is different.

mind the gap……

 

 

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One Response to Mind the Gap.

  1. Heather Young says:

    You have opened my eyes to the wonderful education system we have in place here. Something has to be done to make the system accountable for ignoring kids who need help. I have found most school heads are only interested in their high achieving kids who will make their figures look good when the SAT’s results are published. We all know the stories of ‘problem kids’ not being in school during an Ofsted inspection and how the kids are drilled in how to behave when the special visitors come. I think Mum’s with special needs kids need to make a stand and make sure kids who need help get it. Who’s with me?

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