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. 


  1. Humbled by your Commitmrnt and intllegent objectivity/subjectivity mix as well as being empowered by your love. River is doing so much more and progress continues. Huge love xxx Martyn

  2. The funny thing about the future is that it's so unpredictable. Would you have thought a year ago that River would have made the progress he has? Maybe next Christmas it'll be a different story with other children, or if not maybe the year after that. You're blessed with River as your son though, and he's blessed with you and Tim as his parents.
    Merry Christmas to you all x

  3. My oldest has just turned 16 and the meltdowns are much easier really, and more predictable - in that if you give him everything you know keeps him happy they are less likely to occur - and then behaviour modification can be done when I can handle them more. If that makes sense. And when I say behaviour modification - I mean like teaching him he can't just eat biscuits all the time.