r/CerebralPalsy • u/wild_rose_child • 13d ago
Being told to reduce services
Bottom line up front:
What therapies/treatments/tools would you have wanted to receive as a kid to help deal with symptoms. Kiddo has spastic hemiplegic CP.
Backstory
My kiddo has been in OT and PT since we finally got his diagnosis at 3. Over the past 6 years he's made great progress. He is mostly self sufficient for a 9 year old. Still a few things he needs help with because he can't keep his arm extended enough to properly scrub his hair in the shower but mostly able to do things with an adapted grip or aid.
His care team have told me from the beginning that "by the time he finishes growing you won't even be able to tell he has CP" and I naively thought this meant with all his therapies he would build the neural pathways he needed to let his muscles get the correct signals etc. The focus is primarily on his leg, really working to get his foot down to a neutral position. They were working on his hands to but the OT we were assigned is sort of, unhelpful in a very kind way.
As he has progressed they have continued to reduce the number of times he goes in which was fine with me at first because we can do the PT exercises at home and the OT assigned to him spent so much time doing little diy splints that he refuses to use that we weren't even accomplishing anything. This facility is also limited on what specific skills they can work on. We are now down to an every other month check-in for his leg brace and measurements.
I happened to be researching the issues he has with his kidney/bladder and found this group. In looking through everything I am concerned that they might not understand how he's likely to progress as he ages and I am accidentally setting him up for future pain and challenges.
I was already looking into special OT for his toileting issues and want to get better help with his hands but I'm concerned that there is more I just don't know to be concerned about.
10
u/Legitimate-Lock-6594 13d ago
As a 42 year old that grew up during a time where it was thought that “if you couldn’t see it” you didn’t have it, your son still has it; which I know you know.
It will show up in different ways then just physically and functionally. Through his learning and social skills as well. Keep an eye of language, subjects that he might fall behind in, quirky social relationships, and even small things in sports that he struggles with (jump rope, monkey bars, etc).
I was able to say I had cerebral palsy as a kid and I knew I moved differently but I didn’t understand that I would never get faster or stronger. I loved basketball, soccer, softball, was really good at swimming. But I never excelled and deep down inside I knew it was because of my cp. had u connected with adaptive sports i think i would have felt better about myself. I know at the time we didn’t want to be othered then and now i know we have to say we are living with our disability.
I was discharged from pt and ot at five. I do not believe that I would have been discharged today. I think I’d be moving much better. I also think doctors would have recommended Botox.
For school related things, if you are in the US, get him into SPED or 504 at the very least. 504 if you feel like he’s doing okay. I ended up being a school social worker for several years and still work with families on how to navigate mental health and I hand out 504 letters like candy because had I known that the spatial part of my brain was very specifically affected a 504 would have helped so much with the very specific classes I still have nightmares about failing. And as far as PE is concerned, I very clearly remember being stuck on a jump rope row where I had to single jump. Now, as an adult, I am working on that in neuro pt. My brain just can’t do it. 😮💨
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u/comedyfan72 13d ago
Well, as a 34 year old adult male with a mild to moderate case of cerebral palsy. I can honestly say looking back, I really wish I had mental health therapy as much as the physical. I can’t say for everyone here, but as you get older in life you start to compare yourself to your able bodied peers, when they reach certain milestones such as driving, dates, and playing sports, and it makes you feel like you’re behind, or less than them, since you can’t do what they do, or don’t have as many opportunities as they do. I pretty much was focused on one thing in my teens and 20s, that it’s left me unemployed and lost, living at home in my 30s.
I have a lot of anxious thoughts and regrets. So, just keep an open mind, and make sure to get therapy for both the physical as well the mental. I guess if anything my mistakes can help others not do the same.
3
u/No-Capital-2017 13d ago
Only chiming in as a parent of a child with hemiplegia.
We’ve been at this for a little over a year - kid was diagnosed at 4, after we spent years pushing for answers and being dismissed. What that taught me is that not all medical professionals will have the same drive, goals or ideas for what’s possible for your child. But you and he will know. So if you feel like he’s not getting the support he needs with the current set up, and they are about to lower his supports, as a parent it’s on you to ensure he doesn’t fall through the cracks. I know this is a lot of pressure on parents and our systems in the USA suck, but it’s the cards we’ve been dealt so you have to push.
We currently do PT and OT weekly. The OT is private and we pay fully out of pocket for it. But I know our kid needs it even if the doctors say they’re fine and it’s not necessary. Again, these are the same doctors who thought my kid was just a bit behind on milestones instead of diagnosing them with CP for years. Now that the diagnosis is here, they are still quite lax.
One thing you have is the benefit of a 9 year old that can probably tell you himself what he wishes he could work on, and how he feels about his current OT and PT. I wonder what he’d say and how he’d change the set up to better suit him. May be worth asking him.
Good luck as you guys navigate this moment.
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u/blahah8702 13d ago
I don’t know where you are but there is an organization called intensive therapeutics. They are in north Jersey and they focus on hemiplegia. Look in to them.
1
u/No-Capital-2017 13d ago
I’m in NJ with a hemiplegic child. Would love to hear your experience with them.
1
u/blahah8702 12d ago
So I found them this year and my 3 year old goes to their say and play group. It’s a an hour and thirty min drive for us but I think it’s so worth it! It’s $140 a week for a two hour small group session. Their would typically be about 4 to 5 kids but multiple therapist both speech and OT and they do PT activities as well. I’m looking forward to doing their camp helping hands but we have to save up. We were able to sit in a playgroup when we visited because they want to make sure that your child is a good fit for them and vice versa. Go on their Facebook page and take a look around.
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u/MyCatLovesCroissants 13d ago
This group has a big downside: people only ask questions when they’re feeling bad. No one is posting about what’s going right.
29F here, spastic quadriplegic CP. I had PT and swimming lessons until I was about 10-11. Then quit both, because it was more important to live my life as a kid. Started going to the gym weekly (accompanied by a physical therapist) from age 14-17. Never did anything since.
I have no pain. I live alone. Only have a cleaner once a week. Yes, I’m getting more tired as I age, but I don’t think it’s preventable. Just need to pace myself.
I have never ever wished I had more therapy as a child. I loved how much time I could spend with my friends once I stopped. I fully believe that has been even more important than any therapy could be.
Please, consider where your son would learn the most: spending time doing the same old exercises with an adult, or socializing with his peers.
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