Someone please make me feel better and let me know I'm not the only one who is so bad about using the stander! I know it's good for him but I can just never get it together enough to do it!

Kara (Vinny's mom)

Hi

The stander is really important but so time consuming and lots of days Ben isn't well enough to go in it.  Ben's carers are supposed to put him in every day, some a really good at doing it but others avoid it and I am always cursing myself for not reminding them.  I am sure there are loads of really good things you do for Vinny every day. Try not to beat yourself up

Sally x

Shoot - I am the only one! They get him in the stander every day at school, I made sure to have it in his IEP. But weekends and vacations, I don't know, I just have a mental block with it. Oh well, I am only human and sometimes things just slide off the radar screen! I am right on target with everything else though, I am with him all day - like I said I just don't know. Admitting your faults is the first step right!!!????

Kara...you are not the only one who doesn't put your kid in a stander or put their hand splints, afos, etc on.  Most important your not a bad mommy nor are the rest of us.  We all do the best we can and what we feel is right.   I have yet to see a book at Barnes & Noble titled "Canavan Child Care 101", and if someone has please send to me.  So please stop being so hard on yourself and continue loving that little boy and enjoy every second your with him.

Brenda

Don't feel badly :)

If I am being honest, I do not ever do the stander! It sits in our garage collecting dust.

I am a very laid back Canavan mom, I guess. There is very little I do in terms of standers, afo's, splints, braces, etc. The way I look at it is life is too short (theirs and ours) to have it packed full of 'stuff' we have to do for our kids. I try to live as normal of a life with Celeste as we can and I don't even really think about what I *should* be doing anymore! LOL!