My son is almost three, he has recently got his first wheelchair and is learning to use it. It has made a big difference when we are out and about however I am looking for some suggestions for help in a particular situation.
As a family we attend church on a Sunday. Other children are involved in the sunday school, which they can attend from age, 3 which is downstairs, no lift, its is busy, noisy and the children run about, like children do. The person in charge uses music and dancing to attract their attention and most of the children get alot from it.
My boy would firstly not cope with the noise, he would need to stay in his wheelchair for most of it, so would get frustrated at not having the same freedom as the other children. He would also need someone with him one on one to explain whats going on, move his chair (he's not got the hang of using it for himself yet) and help him to access thing like the drawing when those times arise.
If I don't send him down he misses out on the social interaction withe the other children and there is not alot else for him there, not alot of point in going. I am struggling to cope with him at church as it is, he gets bored.
Do I send him? Do I go with him every week and miss out myself? Or do I keep him back? How do I enable him to get the most out of church and make these experiences positive ones?
There is so much he cannot do, but I really don't want that to be the focus of what he sees and feels, he is in a great nursery where they understand his needs and he just fits in. At church, it feels as though, people make assumptions about his abilities and don't quite believe me when I explain. (he looks alot better than his ability)
It seems odd now to find places that aren't wheelchair accessible, but I know I've found a few and I've been lucky to have people help me get her up and down the stairs. And for now Leacie is still small enough to carry if need be, but that's not going to last long. And as you would know, carrying a child with CP is nothing like carrying an able bodied child, they just don't cling on and sit comfortably on your hip (well I know Leacie doesn't, she has to sit on my forearm).
I'd be talking to the Pastor or the person who runs the Sunday school, I'm sure together you could work something out. What if you carry your boy down the stairs and someone else takes his wheelchair. I'm sure someone would be willing to push him around the room to the different activities. Does he have a specialized chair (Leacie has a Kelly chair), maybe you could take that down for him to use. We have that issue with people not realising the extent of Leacie's CP because she can talk to well and has no head movement issues. They often look disbelieving when I tell them she has Quad, even some doctors.
I'm facing the 'equipment' carrying issue now myself, today is Aleacia's kinder orienteering day and it's pouring rain. I have to get her, her wheelchair, her walker, her kelly chair and her bench stool into kinder for a 2 hour visit and then next year when she attends 3 days a week there will be even more equipment I suppose I will learn to become adept at carrying it all, but for now it does my head in, lol.
Anyway, good luck, I'm sure you can work something out with Sunday school.
Thanks, your right about the carrying, he just leans and being just over 10kgs of dead weight its hard. His home seating is too heavy for me to carry, even to the car. The rules here are a building has to make 'reasonable adjustments' anything which costs over £50 thousand is not reasonable, so you either cannot go or make do.
When he goes into maistream education (at the moment he's in special education) he'll be provided a second seat and potty so I don't have to take in and out, it'll just be the walker that has to be brought. Because of the way our system works, NHS pay for the at home needs and education authority have a duty of care to make sure he has the right seating at school, so they're funded by different pots of money if you like.
I think I'm more concerned he won't enjoy all whats going on because he'd rather be crawling about. I had a long chat with my husband ast night and we decided whether others go down at 3 or not he's not ready, so we'll wait. But your right long converstations with our pastor need to be had, although he's one of the most disbelieving ones as Sammy loves to chat to him and gives him big smiles!
I feel like this is just the beginning of lots of different decisions as to whether he is treated differently to others or not. Like Leacie he is very mentally able, so he's beginning to notice. I find people attitiudes, even when they're being positive, so frustrating!
And your right, carrying 'stuff' is very head doing! My back is now working very hard!!!