Autism confirmed

We had the call from one of Jamie's doctors the other day. He has so many different professionals involved with him, about 11 at last count. Anyway this was the local community paediatrician who had organised the autism assessment. The various bods who had been into school to meet Jamie all met up and decided that, yes, he is autistic as well. I have to say I'm still not 100% convinced. I have a first cousin with Ashburgers (spelling?) and when I look at the two of them together they are so different. For one thing Jamie does what everyone says autistics never do, shows affection. And he looks directly at you when you speak to him, and will come and give you a hug without any prompting. There are autistic traits there. He goes off in his own world, is very obsessive about certain things (although he's never bothered about any change in routine), flaps and 'sings' to himself. I don't know.

The trouble is that Sotos is still such an unknown syndrome. It is quite possible that the autism experts who came to see him have never experienced Sotos. If you read about Sotos it almost always says 'autistic like traits', but it is not part of the autistic spectrum. I would have been happier if a Sotos expert had looked at him and said that certain aspects of his behavior were not Sotos. It would be very easy for someone with no experience of Sotos to assume he must be autistic. The trouble is there are no Sotos experts out there, as far as we know. I just hope the autistic diagnosis doesn't overshadow the Sotos, which I still think is the dominant condition.

We had to cancel the lumber puncture because Jamie developed a really nasty ear infection. He's still on antibiotics three weeks later. His main paediatrician, who was going to do it, decided to cancel until it had cleared up. And as we're off on holiday on Sat I guess it won't happen this side of Christmas now. Still at least it will be done in Barnstaple rather than Bristol.

Just to make the week even more fun thee of the new fish died. The two Rams and one of the Gurami's (not Guppies as I said before) got white spot. They must have come from the shop with it because they had only been in the tank two days. Still a lot of funny blue stuff in the water and a water change seems to have done the trick, the others are all fine. And amazingly the five cats haven't taken the blindest bit of notice of them. I was expecting them to line up with napkins and cutlery!

On a positive note, the sun's out!!!

Still raining!

Well it's still raining! Is this global warming then? I notice they seem to have stopped calling it that and now say 'climate change' instead. Ok so we get a lot of rain in Cornwall, especially in the north here, but this is getting silly now.

I'm going to try and post some photos over the next few days. I always think it's nice if you can see who it is your reading about. Not that I allow photos of myself to see the light of day very often. I'm one of those people who dosen't photograph well. But Jamie (our little boy) is angelic in photos.

People say it must be hard having a special needs child. To be honest I have nothing to compare it with so to me it's the norm. Jamie is an only child and so all his little odd ways are just the way it is. But I do wish he would talk. Of everything I think that's the thing that bothers me most. I long for the day when he says mummy. They tell us not to expect proper speech until he's seven or eight. I know it will come, there is no reason to think otherwise. He has speech theropey and they tell us that he has the ability, makes all the right sounds for speech. So it's a waiting game.

So what is Sotos syndrome? Well I wish someone would tell me! It's quite a rare condition that currently affects about 300 children in this country. It's a groth and development problem. Basically Jamie is about two years behind with almost everything, about three years behind with his speech. But he's ahead with groth, especially his head, as you'll see if I can manage to post a photo. And he's ahead with some things like memory and recognition, we're pretty sure he can read.

If there's anyone out there with any experience of Sotos I would love to hear from you.