The problem with having an intelligent three year old that is immobile and can't use her hands is engagement.
Yesterday Chickadee spent the entire day harassing me. I mean, I get it.
1. She can go potty but she can't get there by herself.
- That sucks.
2. She can understand the story I read to her but she can't tell me what she thinks.
- That sucks too.
3. She is delighted by so many toys but she can't play with them independently because of her hands.
- Complete sewer system suckage.
4. She hyperventilates because of neurological impulses and mommy says, "Honey, what is wrong with you today?"
- What a load of crap.
We looked at each other three or four times throughout the day.
"I don't know what to do for you." I said blankly.
She looked at me with her wizened but slightly desperate eyes that said, "BRING IT."
So. I have a three year old with angst. I've got to do something people.
I've thought of audio books. I can't think of anything engaging for her to play with. She only has 5-10% use of her hands. I am about to start a crusade for a communication device, but I don't know where to start or who to talk to. We did her school evaluation and goal setting, and they just aren't challenging her.
HELP.
Aw, you guys. I know that nobody really has any better idea what to do than I do. Except a few key people that I'll need to get in touch with. Good think I have mad Google skillz, and a loooong list of medical/educational contacts.
Sigh.
Any ideas to keep her busy with while we're waiting for her Service Dog and Communication Device? I can't be at her beck and call, I've got a few items of housework to stop avoiding. But she's just so bored.
fabulous photo credit
Oh this pulls at my heart strings. I wish I had some suggestions. Did you ask her doctor? Children's Hospital?
ReplyDeleteOh Man do I LOVE this post - I mean not love, more like hate but I like the way it's worded, it tells the story - short and quick.
ReplyDeleteWe got Annie a zhu zhu pet for Easter and a little motorcycle to put it in and she loves watching that thing go all over - as I was watching her and chasing the thing to bring it back into her view I remembered that they have little tunnels for these guys and rooms that you can put together so the thing stays confined - honestly Annie could watch it for about 20 minutes, as well as my typical kiddos - it makes noises and turns, you only have to touch it's back every 5 minutes or so. We also have TJ Beary Tales that she enjoys (teddy that reads stories) and that's about a 15 minute story she can listen to by herself, and just yesterday I found a"fin fin friend" interactive fake aquarium - I think you have to make noise and the fish moves I figure I can let Annie and her sister "play" with that together and again give me a few more independent moments throughout the day. :) Good Luck!
I'm going to think on it and let you know if I get any cool ideas. I may not come up with anything, but doggone-it, I'm gonna think on it anyways!
ReplyDeleteLove your blog, Journey. Not quite sure why I haven't found it before, but glad I'm here now.
ReplyDeleteI think my daughter has Rett angst too - often I think she's screaming/wailing because she's sad/mad about herself, as well as bored. It kills me that I can't do more for her. Does Chickadee go to school yet? My Amy seems happier since she started school - they do so much more with her than I can by myself, and she loves being around other kids.
Looking forward to following the blog.
I think books are tape are a great idea, as well as scholastic DVD's. That is books on DVD and she can see the pictures. Also, I think it is important to find things she can do. How ever small they may be. Most of which, will probably need your help, but I think you have some great ideas with who to get hold of to help. I would bet they will know more. Don't lose hope, somewhere there is someone who has been through this too, and they know what works.
ReplyDeleteFor some kids, riding a horse is magic. If there's a local hippotherapy program to check out, it would be worth seeing if Chickadee likes it.
ReplyDeleteHi, my daughter Jaime is 6 yrs old and has retts.
ReplyDeleteAbout 3 years ago I discovered the fisher price power touch system and it has been a real life saver. She will happily play with it for hours letting me get on with all that I need to do, I just need to turn the pages for her every so often. Each pages has so many different things that talk and make noises and play music that she can spend 5-10 mins on a page quite happily. It is one of the few things she can operate as her hand functon is limited to light tapping. The power touch has different interactive books that go onto a pad. They do so much, tell stories, teach letters, numbers, colours etc. There is the power touch baby which is for pre schoolers and the power touch learning system for older kids. Young kids can still use the learning system but the books are not so durable and we have had to replace a few as they get wet from her hand being in her mouth all the time. You can't buy them in the shops any more but you can get them secondhand on ebay. I recommend investing in some AA rechargable batteries while you are at it.
The leap pad baby is also good but she needs someone to help her with that as you need to tap the pictures a bit harder than she is able to. Someone else suggested TJ Bear, we have him as well and he is good but needs 4 D size batteries which makes him a bit more expensive to run. You can also pick him up on ebay for a good price. I usually put TJ on to read her a story at night if she not tired enough to go to sleep at bedtime.
During the day Jaime prefers to have something to keep her hands busy rather than just watch dvds or listen to stories.
The power touch has kept her happy and stimulated and taught her so much.
I can't recommend it highly enough for rett girls.
Sorry for such a long post. I hope you can get one and your daughter loves it as much as Jaime does.