The denial I have been experiencing recently stems, in part I think, from the fact that my son is perfectly developing in terms of vocabulary and many other developmental milestones for an under two. The problem is that he is three and half.
People who meet Tokoroth, or observe him playing, think he's lovely. He doesn't exhibit any of the repetitive behaviours (hand flapping, spinning, etc) that tend to make people shy away and he just seems quietly attentive to his drawing or playing, a little shy and reluctant to talk. "Cute", "adorable" and "lovely" are the words people use to describe him (parents, teachers and brothers are perhaps a little more reserved!).
Two things spring immediately to mind. If he spends the next twenty years of his life just a couple of years behind then with good schooling I don't see too much of a problem, perhaps academically, perhaps a little socially, but manageable.
The biggest fear I have currently was vocalised perfectly by his mum yesterday and that it is he will forever be a child trapped in an adult's body (not that any of us completely escape that as Shiny Biscuit points out on her blog).
Sat in a restaurant yesterday our quiet, reserved son didn't attract much attention on account of him doing a passable impression of a very well behaved two year old. Roll on ten or twenty years and behaviour that is endearing today could be perceived as socially awkward.
I'm really not going to have any answers anytime soon even if he receives a diagnosis in the next six months it will be years before we really know if he will be capable of living life as an independent adult.
A harsh reminder at the end of the day of the gap between the Little M and the Tokoroth. Little M spotted this picture taken in the summer of 2007 at a party celebrating Little M's 3rd birthday. Tokoroth is less than eighteen months old in this picture and it's memorably prior to noticeable regression (the point in time when many autistic children appear to stop progressing or actually regress developmentally).
When Little M saw the picture he recalled how (more than two years ago) he saw his friends here, what their names were and what he did and what certain outcomes were from that day.
Tokoroth had a party for his third birthday. I am of the opinion that although he enjoyed the day he has no recollection of the event or that even if he does that I will ever hear him recall it in any way shape or form. I remember how Little M raved about his day out on the way home and how he told his friends about it the next day at nursery.
Tokoroth is six months older now than Little M was then. He doesn't have friends at nursery and we've never had a proper conversation about anything. All of a sudden it's all a bit overwhelming.
On the bright side little Tokoroth is an absolutely awesome, lovely, healthy, playful child who has been an absolute joy to be with this weekend and, despite being different, he fills me with love and pride. In the grand scheme of things, really, we're all quite lucky and much better off than some. His biggest handicap is having me for a Dad! =)
Lovely post! My son Jack is 5 and was diagnosed with autism at 3 1/2. This is a terribly difficult road, but I'm glad you are blogging about it. It's helped me find an incredibly helpful community and I always feel better after writing rather than ruminating. My only advice (well, maybe not only) is to find a support group to attend. It has helped me more than anything.
ReplyDeleteDelightful. I'm with you on that one as I'm sure my children's greatest handicap is me! Fortunately they have become bolder over the years and are not adverse to translating my statements in restaurants so that the server understands the difference between my 'tomato' and their 'to MATE o,' with the added one liners 'she's foreign your know.'
ReplyDeleteThanks for stopping by. I would not say my autism journey is over, but it is certainly a lot easier now than it was earlier. One thing I can observe is that we never know how things are going to go. Not only are things not linear. Based on looking at where our guy was at four, we not only could not have predicted were our guy would be at 14, we could not even have predicted roughly what things he would be best at. Here is a guy who was not speaking in anything near full-sentences until age eight, and at age 14 his *French* teacher tells me he is one or two or three kids in the class who really "get it," and there is nothing he likes better than talking with a bunch of his friends on Skype. Mind you, what we might consider fairly simple questions like, "Have you done your homework?" can be very difficult. Go figure. There is no point trying to predict other than to predict that, like everyone, with love and encouragement, our kids will grow.
ReplyDeleteI like your blog. The approach you are taking, seems to be the one that takes the people I've seen on this journey the furthest.