In my last post, I mentioned Carver's appointment with the Neurologist. Kinnick doesn't really need to see the Neurologist. She seems to be doing just fine - other then delays related to her lack of breath support, lack of vision, and hypotonia. However, even with her hypotonia, she's doing quite well. She's just very weak. The PT suggested some exercises to help strengthen Kinnick's legs - mostly squat type exercises and walking up/down stairs. She also mentioned getting Kinnick a balancing board. So, we added that to the Christmas list.
The PT made some suggestions for stretching Carver. I asked if she thought that Carver was "as far as he's going to go physically". The reason that I asked is because we put him in a sitting position every day and work so hard to teach him to sit independently, but he just can't do it. She told me that she believed he could and would do it. She believes that Carver has "Learned Helplessness". What's that? Well, we treat Carver like he is 3-6 months old. We always watch his head, and we never let him tip over or fall. We guard him at all times when working with him. She suggested letting him suffer some consequences for his actions. Sounds terrible, but I think she has a point. She didn't suggest letting him really hurt himself. Instead, she said to practice putting him in a sitting position while on a soft mat. Or, when there are soft pillows around him. Then, instead of guarding him and catching him every time he leans to one side or tips over, let him fall. This will teach him that there are consequences for his actions and he shouldn't do that. By always catching him and guarding him, we have taught him that he doesn't have to do anything, we'll always be there and help him, and he has no idea that there are really consequences for his actions. We're going to give it a try and see how it works.
We got Carver's wheelchair adjusted just in case he is ready to go to school in March. We didn't bother getting Kinnick's adjusted because she's doing so good with her walking and for distances, the school can put her in a wagon.
Tomorrow, we see the Pulmonologist and Carver gets to try out the new Auditory Conditioning System.
3 comments:
Love the thing 1 and thing 2 outfits!!! I know letting go a little is going to be hard. We have this natural instinct to protect and it's hard to fight it but that is a valid point. (I think my hubby suffers from this also, lol).It's so amazing to see how far they have come.
Yay that Kinnick is doing so great! Keeping my fingers crossed that Carver achieves more with this idea of "controlled falling". Sounds a bit crazy but at the same time so logical.
We've had to do the same for my son. He is capable of much more than he willingly does, but no matter how much we've pushed him he always does things when he wants to and not a second before. He can sit on his own for short periods, but chooses not to because it's easier to lie on the floor. We stopped "rescuing" him a while back and instead of doing everything for him we show him how to do it for himself. Doesn't always work, but he figures it out eventually. This includes sitting and falling when he chooses to push himself sideways. He has almost zero protection instinct and mostly just lets himself slam into things, but he isn't the least bothered by it. Which honestly bothers me because I wonder if there is ever to be an end in sight.
By the way, I wanted to thank you for mentioning the Special Tomato chair you bought Carver. My son needs back and lateral support in a chair and we've searched endlessly and wasted a lot of money trying to find things that work like we'd want it to. I am mad at myself for not thinking about special needs equipment on my own, but am glad it was brought to my attention. For some reason it really surprised me there was so much available. Duh! We've ordered him a sitter and are anxious to get it in. I saw the MPS chair and really liked it too, but didn't want to pay the price out of pocket. Unfortunately our state programs that exclude income have a waiting list a mile long so most children don't qualify for 10+ years. Yes, you read that right. But since you mentioned the insurance paid for the MPS as a high chair I may approach it that way and see what response I get. I've gotten a lot of insight from your posts and enjoy reading about your kids. They've really come a long way since I started reading way back when. Hope y'all have a great Christmas!
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