Tell Me About it Thursday
Most of my long-term readers will know I work for a disability agency called Pinarc.
We are moving with the times and now have a great new blog up and running.
You can find it here:
PINARC SUPPORT SERVICES BLOG
The post over there today has been written by some adults living in a CRU. Pretty sobering reading really. They raise some great points.
I personally have a lot of trouble thinking too much about the future. I mean, Ryley isn't even 9 yet. But the reality is that someday soon, I am going to have to think about it all. And that scares me. When he turns 18, I am not longer his parent, I have to become his legal guardian or something just so I can continue to make his decisions for him and have a say in what happens.
I can't even imagine at this point of my life NOT having full control over his wellbeing. He can indicate to me and David what his needs are, but we are the ones giving him the opportunities and, at the end of the day, controlling nearly every aspect of his life.
What happens when that is taken out of our hands? What if it is put into someone else's hands? Someone who doesn't know Ryley that well.
I know it sounds like I am a crazy control freak of a mother, but when you have a non-verbal child, holy shit, how else am I meant to be???
I know I am not the only one who worries about my kids future. That comes with this whole parenting gig. But for a child a with a disability, it is so much more complex.
I often say that Ryley can always live with us. We will make whatever adaptations in our lives that we need to make to ensure he stays with us. But the other side of that is, what if Ryley would prefer to live in a CRU? What if he doesn't want to live at home? He is a switched on kid. Just because he can't talk, doesn't mean he has no idea what is going on around him. What happens if he ends up getting really angry with us for not letting him grow up and move out?
It will do your head in.
Sometimes I think too much.
Anyway. Go and have a read of the Pinarc blog.