Thursday, 9 June 2016

But he doesn't look disabled

When I post pictures of Nicholas online, I am conscious not to post pictures that show him in a negative light. We certainly document "the bad times" so that we can remember what happened and when, but when it comes to posting online I do try and post the most beautiful pictures of Nicholas that I can find.

Pictures that can #sparkjoy

To me, my son is Nicky. I do not know him in any other sense. So when someone meets him for the first time after talking with us about his diability, they often say "but he doesn't look disabled".

Most of the physical indicators of his syndrome are hidden away.

His hypotonia is hidden by his clothes.
His lack of talking is hidden by his smile.
His lack of eye contact is hidden by his long eyelashes.
His lack of social interaction is hidden by his jittering energy.

Our friends, meaning well, will say "oh but all kids are fussy eaters" or "all kids are mischievous". We have even had people say "boys will be boys" when they saw Nicholas dismantle something in their home.

But for us we know that he will essentially always be a fussy eater, he will always struggle with strength, environment, sound and social interaction. All of these factors will influence his ability to play and therefore learn.

But he is Nicky, and I love him to bits and I can't imagine him in any other way.

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