I have 2 sons. G is 7 - a unique, cheeky little man who makes me laugh more than anyone else I've ever met and whose biggest ambitions in life are to a) get his first wobbly tooth and b) become a very rich video game designer who goes sky-diving at weekends. J is nearly 4 and, after a long fight with a particularly nasty type of epilepsy (called Infantile Spasms) as a baby, was diagnosed with High Functioning Autism a year ago. J's ambitions in life (if he could communicate them to me) would probably be along the lines of a) to be allowed to eat nothing but
Frubes, b) to never be told that he has to stop doing whatever it is he is enjoying doing, however long he has been doing it for, and c) to permanently remain as naked as the day he was born.
As with all families, life in our family is peppered with ups and downs and curious incidents. But the fluctuations that arise from having Autism in the fold go from the sublime to the downright ridiculous and the incidents just seem to get curiouser and curiouser as we go on.
I wanted to write some of this down, firstly because I like writing and it feels cathartic, and, secondly because I couldn't find anything to read that is about Autism in layman's terms. No science bits, no promised "cures". Just the day-to-day experience of what it means to a family when one of your most precious people in the world is autistic.
3 comments:
A wonderful and engaging account of a beautiful loving family..
Hi-it's me again. My youngest daughter was also diagnosed with Infantile Spasms as a baby! I'm really anxious to know what your experience with them was like. Is your son seizure-free now? Our daughter is, thank God!! It really is spooky how many similarities there are between our families! I think our children are about the same ages, as well (9 1/2 & 7)
Hi Erin! Wow - I've only ever come across one other child who had IS then autism. So glad to hear your daughter is now seizure-free too - Jude's seizures stopped when he got onto the Vigabatrin. He'd been started off on Prednisolone, then Epilim, then all sorts of things from tamazepam, diazepam, tegratol, to lots of others I can't remember the names of!! Basically, we had to fight for him to see a Neurologist at GOSH who took him off the cocktail of drugs and gave him the Vig. He'd started fitting at around 6 months and it took 7 months of up to 15 IS and other type seizures before they were controlled! You know how it is - really not pretty. Since then, he's had a couple of suspected drop seizures but nothing diagnosed and seems ok now in that department.
It was horrific - but we know that we were lucky to come out of that with "just" autism!
Would also love to know your experience of IS - please either email me or let me know - daveandt@btinternet.com
Have a lovely day. Kristina x
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