Our journey through life with hemiplegic cerebral palsy and infantile spasms

Wednesday, December 12, 2012

Difficult discusion

I've been having this battle with Karsen's PT. Ok, not a battle she knows about. So, I guess I can't say it is a battle, it's really something I need to talk to her about but just don't know how to say it. Let me catch you up to speed.

Karsen's OT, Mary Beth, and I are on the same page with Karsen. The things we are currently working on Karsen with is getting up from a sitting position (bench sitting) to standing using his glutes, and also weight shifting in his hips to help start walking. Karsen is VERY affected in his arm, not as much in his leg, because of this he doesn't crawl, he butt scoots. He scoots everywhere, and he's gotten quite fast. For whatever reason his pt is hung up on trying to get Karsen to crawl. He just wont! I know it's not going to happen. Ok, let me rephrase that, it's not going to happen until he's much older, like say after walking... Now you may be thinking 'Don't think that way, he will crawl, let him prove you wrong' Let me tell you why he wont. He's one smart cookie. Making him crawl now would be like making a toddler (who skipped crawling and went straight to walking) learn to crawl. Why on earth would they want to crawl when they know how to get places much faster and more efficient walking?! So, do you see my point?  I wasn't really truly aware of this being an issue until Mary Beth was asking me what his PT was working with him on. Keep in mind, Mary Beth has worked with kids with CP for years, I trust her knowledge and her judgment. So, I'm trying to figure out a way to talk to Karsen's PT about not pushing him to crawl anymore, and moving on to other things. I have started to feel like the appointments are a waste of our time, since I do way more with him at home in the right areas. I don't want to tell her how to do her job, but this is my child we are talking about. I don't want to offend or make her made, we have to work with her for quite some time. Don't get me wrong, I really like her. She is super nice, and seems to know what she's doing except for this one part. I'm not sure if it's because she didn't see Karsen from the start or maybe she hasn't worked with hemi cp kids before, whatever the reason I need it to change. Any words of advice? 

On a much lighter note, Karsen drank from a straw today!!! Woo hoo! Like anything before he may have done it today but that doesn't mean he's solid on using a straw from here on out. He always takes a good month or so to really get comfortable with something new. He also started waving hi. If you say hi to him, his hand goes right up in the air. Still no words yet, but he is understanding more and more. When asked, he'll shake or throw a ball. He'll also take things out of baskets and put them in or on. So, we're making steps here people. They may seem little to you, but they are pretty big over here.

Oh, and did I mention he'll play peek a boo now?

(sorry for the me shot in the beginning, the hubs was shooting this one. and yes we were in subway and yes my oldest said "I'm going to beat you".... He's in the 'I win!' phase. He also asked my brother in law an interesting question the other day "Uncle, Do you beat auntie?" OMG! This kids crack me up!)





2 comments:

  1. Jake only beats me on Tuesdays. lol! Funniest utterance ever! And I say you just explain to her that you are concerned about the direction of the appointments. Tell her you have had discussions with your OT and you both are in agreement that crawling is just not something that Karsen will do right now. Tell her that you would love it if you could work on something else. Tell her you respect her position and experience, but that you would like to try some new things and get everyone on the same page about what to work on. Be asssertive. And then, read my blog post again about taking offense. lol

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  2. We have had to deal with this as well. Logan is not going to four point crawl. One therapist is adamant that we should work with him on it. The other therapist said she is not worried about. She said while it is ideal that he does it, she is more concerned on him just making his goals. She wants him to get from point 'a' to point 'b' no matter how he does it. I finally asked the first therapist, 'what am I supposed to do, push him over?'. I also told her I'm just excited he's adapting and figuring out what works for him. She finally let up. She still asks about, but doesn't focus on it. We just work on other ways to get the other arm involved. We have started cimt, just for a little bit everyday. My sister in law gave us these 'no,no' sleeves that she got when her son was in the hospital. they kept him from being able to touch his sutures. They work great as constraint. And 'Good Job' on all he is accomplishing. Our babies are truly amazing! -Valorie Champion

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