Tuesday, October 27, 2009

Stander and mental spiral

Yesterday I went to pick up Drake from PT only to find him all strapped into a stander. I can’t really explain what happened to my heart right then, except to say that it dropped a bit. He was being supported by padded “clamps” around his mid-section and thighs. There was a big tray attached to the front. There were springs and screws and lots of metal and wood. And he just looked so… trapped.

You see, Drake hasn’t needed any “equipment” yet. And no one has mentioned any equipment to us. So, it was a bit of a surprise to see him strapped into this contraption, especially since he can pull himself to standing already. His therapist saw my face and quickly said, “This is something I am just trying.”

She went on to say that she was trying to follow the directive of his developmental pediatrician. This doctor recently evaluated Drake and said she wanted him to be doing more standing. She wants more weight-bearing through the legs for bone density and for proper alignment of the hip joints. And Drake hates to stand, because he is all about being mobile. He wants to crawl, throw balls, and crawl after said balls. When he pulls to stand, it's as a means to get on the couch or get something off the table. He doesn't like to just hang out standing.

Given that, I feel successful when I can get Drake to stand at a table for 15 minutes. And I can’t do it alone, because someone needs to support him while someone else rolls him a ball across the table. Balls are very important to him right now.

The PT said that while 15 minutes of standing a day is good, she is looking for 30+ minutes of standing 3 times per day. And am I prepared to support Drake in that position for 1.5 hours every day? Well, no, I am not. I have another toddler running amok who needs supervision. Getting 15+ minutes ONCE a day with Drake is almost impossible.

The PT mentioned that this stander has so many springs and such because it is a model where it’s not locked straight upright. This model lets the whole thing move so the kiddo can practice weight-shifting. Hearing her reasons for the stander made logical sense to me. Because I work full-time and have another toddler at home, I don’t have the luxury of manually working with Drake for extended periods of time.

So, I asked her the other questions on my mind. Is this stander something we would borrow from CCS? How long did she think he would need it? Her responses made my heart drop further. No, we’d need to buy this and it’s about $1,800. He would use it for a couple years. A couple years?! I cared more about that comment than the money. All his therapists have said they think he will walk within a couple years. So, how can he walk if they think he needs help standing? She stressed that even if kiddos are walking they often continue to use the stander for stretching.

She also stressed that we didn’t need to decide now if we wanted to buy it. She was just trying it out because she wanted to follow through on directives from the dev ped. She said she wasn’t sure if he 100% needed it, but it’s something to consider.

I left feeling sad and discouraged. Sad from seeing my beautiful boy strapped into this contraption and wondering if this is his future? Discouraged because I don’t feel we do enough for him. His nanny is great, but it’s very hard with two toddlers and one care-giver. She tries, as do we on the weekends, but it’s tough to feel that we’re doing enough. There is very little real ‘therapy’ going on at our house outside of his various weekly appointments.

I know everyone feels this. I know everyone wishes they could do more. I know many parents have seen their children strapped into contraptions and some with more springs and screws than this one. I know, I know. I feel blessed for all that we have and for what Drake can do.

It was just a sucky moment. I think, too, we have been riding so high on all his mostly positive recent evaluations, that this made me realize that even through all the great stuff he can/will do, the CP just isn't going away and never will.


Cary said...

Just sending you hugs! This stuff is so hard isn't it? Just when you think it's all OK, something happens to yank us back to reality doesn't it?

And yep...the CP isn't going away.

Hugs. I get it.

Katy said...

Bletch. I hate this stuff. I really hate equipment. I don't mind seeing charlie in it, but every time they suggest yet another piece of equipment I feel like I've failed somehow.

You might want to look into purchasing a used stander--they are considerably cheaper.

I just told our PT that I wasn't going to buy a stander. It's entirely too much money for something that I don't feel certain about. Charlie free stands twice a day for about fifteen minutes. That's about thirty minutes a day total. Right now, I'm fine with that.

Hopeful Mother said...

Ugh, it is so so hard. I hate those reality checks. We have avoided most equipment so far, but who knows what the future will hold?

Thinking of you...

Anonymous said...

Do you think you might feel differently if the whole situation had been managed differently - like if the PT had given you some warning and information before you saw him in the stander?


GingerB said...

I linked to you from Ellen's site somehow and I just wanted to touch base with you. This post hit home for me because I too feel a load of guilt about how much I am not doing for my daughter with CP and how guilty I feel about working and all of that stuff. And the one time a PT stuck Hannah in a walker I cried like a baby. It is hard, so try to be good to yourself.