Saturday, 7 June 2014

Life Just Isn't The Same Anymore - But it's Good

The last of the lost blog posts and this one describes how I was feeling when Cameron started therapy with The Institute of Functional Neuroscience and everything changed.
 
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Cameron 16yrs old
In only a couple of months our family, as we knew it, has changed and it is really strange and a little unsettling. Not for a moment do I wish it would change back and I want it to keep changing but I wasn't prepared. Before October our life was predictable we knew what Cameron would usually do in any situation and we went through our days with a certain level of certainty about what to expect. Now we have no idea.

As Cameron's brain is changing due to the work we are doing at The Institute of Functional Neuroscience almost everything about him is changing. Then throw in a growth spurt as well and I have a new child.

I always used to say that my son was a giant toddler, a one to two year old trapped in a sixteen year olds body. A low level of skills but he can reach everything. He is cheeky and adorable but very limited in what he can do and totally reliable on others for everything. Of course he could do lots of things and we knew how to communicate with him and he showed us how much he loved us everyday but he was trapped and we had to find the key to let him out. People always commented - 'there's a lot more going in than is coming out'. I honestly think we've found the key and we are on a journey that finishes - who knows where?

And that is partly the problem at the moment. All of a sudden Cameron is doing all these amazing new things and is no longer predictable. Things that he never used to pay attention to he is suddenly interested in. Like my laptop. This isn't a bad thing, in fact it is fabulous but it's all happening so fast that we are having trouble keeping up and catching our breath between amazing new discoveries and intrigues. Some days I haven't finished being amazed about one thing and suddenly Cameron does something else new and amazing.

It must be incredible to be inside Cameron's brain at the moment. It is wearing him out but after a few days rest from therapy he recuperates again and the smile returns. Can you imagine suddenly after sixteen years discovering your world?  Did he know he couldn't do these things? Was he trying or was he caught in a fog and didn't know what he was missing? Will he ever be able to tell us? We have never ending questions now and we keep looking at each other and wondering what life will be like in a year, six months, even next week. Or will we wake up and this will have been an incredible dream where we made all our dreams come true. I hope not.

It's funny how you get what you wish for and then don't know how to deal with it. As we ride this incredible roller coaster I'm recording as must as possible in my blog and on my facebook page and every therapy session I tell his doctor the incredible things he has done since we saw her some times only the day before. It's almost like an out of body experience because you've never imagined you would be in this situation and it sounds almost too good to be actually true. Could he really be threading pasta and using chopsticks and learning to use a knife and learning to use the toilet and using a choice board and, and, and ......

We've spent years and years trying to do the simplest of things and I've always had this underlying feeling that if you leave him alone he will do it when he's ready. He had to learn his skills developmentally and something had stopped him from learning developmentally. You watch him now and that is exactly what he is doing. He needs to go back and do what one, two and three year olds do. I've caught him crawling between rooms and bum shuffling . He's finally doing what his brain needed to do all those years ago. You can see it in his eyes, they are different, he is seeing his world and he's wondering what it's all about.

Meanwhile I am wondering if I should be heading for the shops to re buy all the toys we gave away from when he was little so he can stack and push and count and swirl. How hard do I push the school to give him a Pre-Kindy program? I know that sounds ludicrous, a sixteen year old doing a Pre-Kindy program but it is what he needs. I can't figure out when and how to fit therapy in and around school and have one week to figure it out. If the school can not accommodate our needs for Cameron do I keep him home and put my teaching hat back on. (It is after all my area of expertise and I've got my girlfriends who are still teaching to back me up) but will Cameron accept me as the teacher when he has rejected me as the therapist?

Life is a giant What If and Do We but How Do We and What Next mixed in with lots of smoochy cuddles from Cameron because he is needing a lot of Mum and Dad cuddles at the moment and constant shock and You Won't Believes and Ssshhh - Look at Cam.

But despite all the shock and uncertainty I wouldn't change it for the world. It is so exciting to see Cameron try each new thing and every little achievement brings my son closer and closer to me and if that means life has to go on hold so I can keep turning that key then that is what I will do. Because I am still chasing my deepest dream which is to sit with my son and hear him say 'Mum - ............... 'and to hear him talk to me about his day.

I may be dreaming but it's a good dream.

2 comments:

  1. Sounds like a really wonderful time x

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  2. It was pretty mind blowing at the time.

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