I Hate This...... (Or Why I Am Not A Physical Therapist)

[youretooloud]

One of the two year olds was recently diagnosed with Type 2 Spinal Muscular atrophy. She's doing better, and I do see an improvement.

However, one of the things I have to do is take away her pillows or anything soft she can sit against. SHe can have one Fisher Price Toddler rocker, but only for small amounts of time.

Everything is so hard for her. It's so much work for her to sit or stand for any length of time, and she can't just sit on the floor like the other kids. So, at circle time, she needs some support.

She also sits W style, which is a Huge No-No.

I hate, hate, hate, making her sit unsupported, and making her play with the other kids because I see how hard it is for her. But, I know I have to... I just cave in so quickly. Right now, she's lying on a body pillow while the other kids play outside. I'm going to let her lay there for 20 or so minutes then make her play again.

Why can't I just get a backbone? I am so fortunate that my own children didn't have any special needs because I know I don't have the backbone for this.

[jen]

It's very nice that you want to make things easier for her. It will help to remind yourself that for everything you make easier, you could make life much harder in the end.

Honestly, and I mean this is the nicest way possible, if you don't have the backbone for it, you shouldn't do it. There are lots of providers with experience with special needs who can manage her requirements. It's always best to match the strengths of the provider with the needs of the child.

It is really, really sweet how much you clearly care for her tho!

[Live and Learn]

Two of my dc kids have special issues..... so I hear ya'!

I try to look at what is best in the long run.

Don't let her lay there. She needs to go play.

[youretooloud]

I did distract her soon after I posted this, then I hid the pillow so she can't see it.

I hid the rocking chair too.

I just feel bad for her. But, I do know it's best... I can see an improvement in just a month of therapy and meds. I'm just such a ****er.

[SandeeAR]

My DD is a childrens PT. Trust me the PT will really appreciate your being tough and following thru. B/c sadly, most of the parents won't bother to follow thru.

[nannyde]

I've seen the W position with kids that toe in when they walk. Does she do that?

I would hate to have to inforce this. Ugh... I feel for you.

Can she crawl-stair climb? I've had kids who were low muscle tone that we worked out a stair climbing routine every day. (crawl frontways up and backwards down using our stair climbing technique) We put a backpack on them... like Thomas for the boys and Dora for the girls and had them be the sherpa for anything that went up and down the stairs. (supervised of course)

All the kids have chores and that was THEIR chore... to stair climb. Did that three or four times a day during morning play time.

The kid LOVED it because they got to pack the back pack and unpack it once down stairs.

It helped SO much in building strength. It's a little spurt of exercise a few times each day that added up to a lot of "fun" but worthy exercise.

[youretooloud]

Can she crawl-stair climb?

She can climb stairs, ladders, and the slide pretty easily.

But, she can't sit upright. She can stand, but not for very long. She can't bend or reach without shaking or folding in half.

They want her to sit on a backless stool, and she can lie on pillows only for 20 minutes in the morning, and 20 in the afternoon. (plus nap) She can sit in her Rocker chair for circle time, or if we are watching tv, because she can't sit up during circle time without help.

Her arms and legs seem like they aren't attached to her joints very well. So, when she runs, it's.. well, it's funny... but, her legs flail all over. She keeps her arms up to her chest, and her hands are either in her mouth or near her mouth. When she reaches for something, or wants to paint, her arms shake.