Thursday, 20 December 2012

Autism: One Year On.

So today marks exactly one year since I first realised River was autistic and I wrote this journal entry:

Last Christmas was a very difficult time for us. I remember on Christmas Eve, Tim went out to midnight mass and I stayed home & watched the Westminster Abbey service. There were these angelic choir boys singing Christmas carols, & I just thought, "will River ever be able to stand amongst other people and sing? Will he ever be in a Nativity?" & it just tipped me over the edge. I just sobbed and sobbed, loudly, as if someone had died. I guess it felt like my hopes and dreams were dying to some extent.
Christmas Day was overshadowed by those feelings of despair. Tim & I sat down to a lovely Christmas Dinner whilst River napped, and I sobbed all the way through it.

But somehow, it gets easier. You learn to take one day at a time, because you have to. You can't keep fearing for the future or thinking what "could have been" if River wasn't autistic, because it would mean you miss out on precious moments. There are so many things about River that make my heart melt. Every time something on the TV scares him and he comes running to me for a cuddle, I could just cry. 6 months ago he wouldn't cuddle us for comfort, so we treasure every single one. I discovered the other day that River had scribbled on the kitchen walls with a crayon- and I was so proud! Two months ago, he couldn't hold a crayon. Now, his obsession is colouring. He gets through 10-20 sheets of paper each day (both sides) and I just want to keep them all!

That despair isn't completely gone. It still punches me in the face when we're having a bad day and I think, "Is this what our future looks like?" And it chokes me.
The other day, River's preschool workers needed to chat to me for 5 minutes when I picked him up so we went into a little side room. We took some paper & pencils for River, but after a minute or so he was dragging my hand to the door. By the time we left, he was hysterical. As far as River is concerned, when I turn up at nursery I put his coat on, get his bag & take him home. The change in routine for a few minutes was too much for him to handle. I managed to get him outside & he dropped to the floor crying, refusing to move. All attempts to get him to walk were futile. In the end, I had to carry him all the way home whilst he kicked and screamed, then eventually just sobbed into my neck.
Carrying him that far was really hard work, but just about possible. But what happens in a years' time? Or in five years? Or when he's fifteen?
Most parents will say their toddler has had a tantrum whilst out and refused to walk. The difference is: there is usually a logical reason why, you can usually say something that they understand to encourage them to walk, and most importantly- you know it won't last forever. Nobody can guarantee that for us.

River is getting worse around children too. I don't know how he is in nursery- I gather he's ok- but if we go somewhere unfamiliar, or if we have people round, he always wants to hurt the children. With babies, he can't stand their squeals and general baby noises so tries to grab & pull at their faces. With older children, he can't stand it if they make a noise or run past him- he wants to grab them and hurt them. Will this change?

We've now reached an acceptance that we just can't know the answers- nobody does. All we can do is put all our efforts into helping him reach specific goals and hope for the best. He has surprised us a lot over this past year, and that's what we have to focus on.

So this Christmas will be different. We'll be hoping that maybe next year River will be saying to us, "Merry Christmas!!" We will be celebrating how far River has come, and how far we have come as both parents and people. And we'll be thankful that we've been blessed with such a unique, special child when there are many people who struggle to have any. 

Friday, 7 December 2012

Leaps and bounds.

The past two or three weeks have been really lovely. River is making sooo much progress just lately, and it gives us so much hope. We've spent a long time thinking that River is really behind his peers in every skills area, but it turns out he's actually been absorbing so much information that he knows a lot more than we realised!
Here are a few good things from the last couple of weeks:
  • He knows his colours! River has always been very interested in colours, & will often pick up two or three objects that are the same but different colours (like two balls, two pieces of lego, or two building blocks) & put them in your hand & look at you to find out the name of the colour. Over & over again! So I find myself saying, "Red ball. Green ball. Red ball. Blue ball. Green ball" for ages. But he never conveyed that he understood which colour was which. Then recently, he was pointing at different coloured cars in a book for me to label the colour when I switched it round and asked him, "River- where's the blue car?" And he pointed to the blue car. Tim & I thought it was just a fluke. "Where's the red car?" He got it right again. He correctly pointed to blue, red, yellow, orange, pink, purple, white, green & black in turn, twice. We were gobsmacked! There are lots of children his age who don't know their colours, so the thought of River being ahead of some of his peers is amazing!! It just goes to show that just because they don't appear to understand your language, they're taking it all in and absorbing so much.
  • He knows shapes! He's always loved pointing at different shapes for me to label, but again I didn't realise he was taking it in as he would never point to something when requested. I only actually discovered that he knows shapes yesterday, when he got hold of one of Tim's Playstation controllers. He managed to correctly identify the circle, square, triangle and cross when asked!
  • He knows lots of animals! River's never paid much attention to animals. But lately, whenever an animal comes on the TV he looks at me & wants to know what it is. We were looking at a book about animals & he pointed at loads of animals when I asked him to.
  • He understands that similar objects can mean the same thing. It's a bit difficult to explain. With some autistic children, you could show them a photo of a labrador & teach them that it was a dog. But if you showed them a picture of a jack russell, they wouldn't know it was a dog. As far as they're concerned, unless it's exactly the same as the dog in the photograph, it's not a dog. River thankfully doesn't have this. If he saw any photograph of a dog, or drawing, or toy- he knows it's a dog. This is a relief!
  • He scribbles! River has always refused to use crayons, pencils, pens etc. If you tried to show him how to scribble, he would just flick them across the floor or spin them. But something has clicked- I think preschool have helped with this- and now he can't stop scribbling! He rarely goes 10 minutes without having a scribble with a crayon. It's such a milestone for him.
  • He's understanding us more. His comprehension is still very delayed, but it's improved so much lately. He understands things that aren't just one-word nouns. If I say, "come sit down" or "scribble on the paper" (when he's using the floor!) he understands exactly what I'm saying.
  • He's responding to praise. He's always been quite sensitive to praise- or the noise that usually goes with it- and would get very upset if we clapped or said, "Good boy!!" But lately, he loves it! He breaks out into a massive grin & a chuckle every time you praise him. He also looks to other people in the room for their praise too, which is amazing.
  • He loves cuddles! It used to sadden me so much that River wouldn't cuddle me. Every parent wants to comfort & cuddle their child, and having your child not respond to this is awful. I wondered if River would ever want to be cuddled. These days, he loves them! If I'm sitting down, he'll often climb onto my lap for a cuddle. If I'm in the kitchen, he'll often come up to me with his muslins and try to snuggle into my legs until I crouch down for a cuddle. And the cuddles I get when I pick him up from preschool are just lovely.
So as you can see, River's making lots of progress! For quite a while now, various therapists have said that they think River is really high-functioning, but it was hard to imagine it when he showed such a lack of understanding. We still don't like to get our hopes up too much as no one can guarantee how much River will develop over the next couple of years, but we're much more hopeful than we were a few weeks ago.