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Special Needs
butterflygrooves
member
CP expectations?
butterflygrooves
member
Our agency SW's intern visited yesterday (we have multiple SW's), she asked about Owl's CP and what we plan to do about it, I was kind of stumped by the question since CP is CP and we can't exactly make it go away. She asked if I had talked to our pedi about the dx and wanted to know what the pedi wants to do about it. I'm taking Owl in for shots in a few weeks and will discuss the dx at that time but what should I be expecting from the pedi?
The ortho who dx'd the CP said Owl doesn't need any therapies since it's mild, the PT we met with agreed she doesn't need PT and is getting inserts to help with her pronation, she also showed me how to stretch Owl's arms and legs to help with the mixed tone.
The SW is looking to change Owl's goals (self care, cognition, educational, etc) as related to foster care and I'm not sure what to tell her, Owl is a little slower at learning and doing things but she has the ability to do anything. Her cognition is low (at around 18 months) and the only way her CP becomes obvious is when she runs because she stumbles, flails, and falls a lot.
I feel like they are looking for a doom and gloom answer from me but all the dr's so far have said everything will be fine. How should our expectations of Owl be adjusted as far as her CP goes?
Sorry if this is all over the place, I'm having a hard time forming what I want to say. I'm XPing to adoption to see what they say too.
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Re: CP expectations?
This seems strange to me too. You say the SW intern visited. I wonder if the intern isn't familiar with CP. Many times, people confuse CP with ID. In some cases, ID or LD is comorbid with CP. But, they are completely seperate diagnosese.
I think you have a good start by visisting the Ortho and PT already. If Owl's feeding or speec is affected by the CP, you may be referred to an SLP. If you live by a children's hospital, you may also be reffered to their CP clinic (if they have one) - just so Owl can be followed by experts in the field.
Again, I find this strange. If the SW already knew about Owl's low cognitive score, why doesn't Owl's plan of care already reflect this? In addition, Owl's low cognitive score could be from any number of factors - from physical trauma in utero, to emotional trauma in infancy, to her inability to demonstrate her intelligence due to her physical limitations. So, in short, Owl's current cognitive score could very well be indicative of something greater, or it could just be a snapshot in time. But, again, whether or not Owl is ID, or has a LD, those are completely different diagnosese than CP.
This is a great question to ask your doctor. Since none of us really KNOW Owl, or the severity of her CP. I don't think any of us can really tell you what to expect. She may have trouble learning new physical tasks (like jumping, hopping, and handwriting). Or, she may never be a world class athlete. Or, she may excede everyone's limitations.
With Lily, we try to prepare for the worse (in terms of where we think her CP might take her), but we work toward breaking all limitations. So, on May 15, we will go in to order Lily's first wheelchair. But, on May 16, we will take Lily to her bi-weekly PT appointmen. I'm not saying you should look at things this way, but doing and thinking of things this way has helped my DH and I.
Good luck at the Pedi! Let us know what he says.
JoJoGee - thanks for your reply! I don't know how to break quotes into chunks like you did so I will give an overall reply.
We've been working on cognition for almost a year now and trying to find a dx for it so it has always been a separate thing to me. When Owl got the CP dx, the ortho explained that it is unrelated to her cognition, I explained all of this to the SW and intern.
We had a speech eval a few weeks ago (she was in speech last year but was dropped because of her selective mutism) and the SLP is recommending 5 hours of speech a month. She has a tremor when she speaks, her voice is mainly low/flat but gets high pitched with the tremor when she is trying hard to get words out. No feeding issues, the rumination that I've talked about is behavioral.
We do live down the street from a great children's hospital, I hadn't thought to ask if they have a CP clinic. How would the CP clinic benefit us?
I think Owl's goals hadn't been changed because she's never been given an actual dx, now that we have the CP dx they want to treat her differently. I understand changing her goals to meet her where she's at but she does age appropriate things (brushes teeth, washes face, uses toilet, etc), she might do them or learn them a little slower but we always get there.
Two Mommies Healing Hearts
We're only a year into our dx, so I'm no expert by any definition. But, the CP clinic helps us to know what is "normal" in the context of CP. It has also given us an idea of where we are headed with Lily. At our last appointment, the rehabilitation doctor said she thought Lily was going to be an "equipment junkie" - meaning she'll probably be one of those kids with a wheelchair, a stander, a walker, leg braces, an AAC device, etc.
We're not dealing wtih cognition issues (at least, not yet), so I really have no experience with that. But, I do wonder if you could get your pedi to reffer Owl for an evaluation.