Tuesday, 17 June 2014

Two years on!

I haven't blogged in a while but in a couple of days time it will be two years since River was diagnosed with autism, so now seems like a good time to write.
It's a strange feeling, looking over blog posts from around that time and at the lists of his struggles- all of the things he couldn't do, all of the things that we worried he may never do. He has come soooo far- we used to say, "If River can just say a couple of words by the time he starts school, if he can just communicate that he's hurt himself or needs the toilet, just communicate his most basic needs, life will be so much easier for him." Now, he talks all of the time! Constantly. Which, despite being exhausting, is music to our ears.

It certainly doesn't mean we're 'out of the woods' though, so to speak. I think many people - myself included at times - have thought that if River can talk, he will be high functioning. He has such a smart mind, is academically advanced, has a photographic memory, that I thought if he can just start talking, and share that knowledge with the world, then he would be ok. Developing speech has indeed helped us to see just how bright he is- he is starting to read, knows many sight words, knows most 2D and some 3D shapes, is good with numbers, and loves putting objects in alphabetical order even without the written word. Speech has shown us that he is academically able to keep up with - and possibly exceed - his neurotypical peers. We know when he's hurt himself (although he usually says, "I want cleaning please") and he can ask for a particular book/toy/song.

But that speech also demonstrates his differences and his autistic traits. Nobody knows yet how severe River will be, but there are so many times I hear River talking and get this feeling in the pit of my stomach that River will always talk in this atypical way, that he will be talking like this when he's an adult, and it breaks my heart. This is a typical 'conversation' I can have with River:

Me: "River, would you like some porridge?"
River: "Porridge. Po-o-o-o-ridge. POOOORidge. Banana porridge. Bana-a-a-a-a-na porridge. Cinnamon and banana porridge. Cinna-MON. Mon. Mon. Police-MON. MOOOOOOON. FireMON. Fire engine...."
Me: "River, LOOK at Mummy."
River: "Fireman. Fire engine. Ambulance. Police car....."
Me: "River, LOOK. Would you like some porridge?"
River: "Yes, please!"

River has no filter. Whatever is in his head, he says. And I think because he is a visual learner with such an amazing memory, he can't think about any single thing without a million connections entering his head. He may learn to keep the thoughts in his head and not verbalise them, or he may not.

He also latches onto certain phrases and repeats them over and over again, throughout the day, for weeks at a time. We had some friends visit a few weeks ago with their children and at one point I said to him, "Isla is reading the truck book." River repeated this a few times, then a few times before he fell asleep. And I've heard it a few times every day since! Other daily phrases include, "Poppy's squeaky giraffe," "Give Amie a high five" and, "Show Daddy your new book."
His comprehension, or understanding, is very delayed, and that's probably my biggest concern. It is slowly improving, but again, there are no guarantees that he'll ever 'catch up.'

I watched an incredible TEDx video on YouTube the other day about an incredible pianist called Derek Paravicini who has autism and is also blind (for the video, click here) and it really made me think of River - not that River has these abilities, but the way that Derek speaks is so similar to him.

It's a real rollercoaster that I'm sure many autism parents will relate to. We've gone from hoping River will manage a mainstream school, to being sure that he will need to be in a special school, to finding a fantastic autism unit within a mainstream school, to thinking he might possibly transfer fully into the mainstream part of the school in a couple of years time, and just lately I've been wondering if he'll end up transferring from the autism unit to a special school in a couple of years, not because of his academic ability, but because of his comprehension of language and the world around him.

Things have changed a lot since he was diagnosed. We don't worry about the same things, and we are (despite much of this post!) able to remain positive more and worry less. In the early days, we were constantly on the brink of despair and would have the odd good day. Now we go weeks, sometimes months, feeling totally positive and then have a week or two of panicking. I think that feeling will always come and go, but hopefully be few and far between.

So, for now, I'm concentrate on specific goals to keep my mind off all the other stuff- which are weekly visits to his new school, learning to use a fork, getting him to sit at the table for all meals and stay seated for adult-led activities. I'm hopeful that if we take care of the little things, the big things will take care of themselves.


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