Happy Father's Day Daddy! We'll post pictures and talk more about Father's day later or tomorrow.
But for now I want to revisit my concerns of Edwin's PT and the lack of any substantial information I am receiving.
As you may remember, I became very upset a few weeks back regarding the fact that Edwin has not been offered any assistive devices to help aid him in walking. We are now at a point where he 100% crawls correctly...palms on floor, up on hands and knees.
As you read, I took him to an orthopedist and she did not recommend braces, and was pretty nonchalant about the visit as a whole. Question? How do you assess a child's movement and mobility in a typical doctor's office? My child cannot walk, and I am not allowing, nor did you suggest he crawl on the hospital tile floor, so how can you see how he moves? ugh..
Anyway, I have tried to talk to PT about the walker since, especially because while he is getting stronger and finally crawling correctly, he is no where close to standing independently, and his low tone is extremely apparent to me in a standing position especially. Not to mention he now exclusively "w" sits, and when I attempt to sit him, he gets all upset and stiff-like, and crawls out of it, and jumps into "w." PT again and again tells me that he doesn't need a walker. I asked her this week to give me a time line when we should start to explore other options if E continues on this path of not standing up without support. She didn't have an answer. Things got a little tense as she attempted to tell me at one point that it was not a tone issue, but more of a balance problem, which is NOT the case, and then a few minutes later talked about his tone issues, when I mentioned that it seemed clear to me that given his birth history he probably has brain damage that is responsible for his mobility/tone issues...aka cerebral palsy. "Could be," she said. Then how do you expect him to magically get up and walk on his own in a few months?
As tough as I'm sure it is to hear get a dx for your child, I feel even more frustrated NOT hearing it, but fully accepting it. In other words, the specialists leave us hanging in the balance, telling us he does not have CP, that he will walk unassisted, etc. But yet, I see his tone issues ever-present, interfering with his mobility in many gross motor areas, in fine motor, and in his speech...or lack thereof. As I explore around, I see amazing children younger than Edwin making leaps and bounds in progress because they are using reverse walkers. I feel it's worth a try.
So the rationale for PT not wanting to go there is that we need to follow the course of development. He has just learned to crawl, and is just starting to cruise (not true by the way, he'[s been cruising on furniture for months, but she argues he is doing it quicker now with less effort.) She said development is a head-down process and we are just at crawling and pulling to stand/cruising and that walking will come.
But what about the fact his tone prevents him from having much stability in even standing? That he can walk with a push toy decently, but does not do well at all with his hands being held while upright? If he is going to need a walker eventually, why not introduce it now? Oh yeah, PT doesn't think he'll need a walker period.
I mentioned that he has sensory issues to the grass...significant. He'll barely tolerate putting his hands down flat on the ground unless he's on a blanket, and therefore, this summer will be spent outside with little gross motor. PT said we should allow him to experience grass to get over his sensory issues. Yeah, we're trying that. In the meantime if we go anywhere public, mall, dr's office, etc, Serena practices her walking while E is either carried or in a stroller.
So when I talk about all of this PT said, "Well we can try a walker whenever you want, but not for Edwin, but for you." ugh. I was so put down and made to feel so stupid, I didn't even know what to say. I tried to explain I didn't want to push E to do anything that wasn't appropriate but that I'd read the walker can help, and she said absolutely not. It does not help muscle strength in the abs. I tried to describe how E still rests his chest at times when standing up, and a walker would force him to stand upright...no response.
She has the PhD, she is the one with experience, I am just a mother wanting the best for my child and she's making me feel like I'm crazy. When I told her I'm a realist and I like to know what is going on and be able to accept it and move forward, (regarding if he'll walk unassisted and if he does have CP), I was told it is ok to be accepting but I shouldn't give up hope either. I'm not giving up hope. Hope for what? I don't need my son to walk without assistance. That's not the be all and end of of who he is. What I need is reassurance that we are doing the right things by him. That we aren't expecting him to magically do something that he might not be able to do on his own right away. I don't feel comfortable having him crawl on the floor for the next 4 months just to be told he won't begin to walk without a walker. I'd rather start sooner than later.
She thinks I'm too focused on walking, and reminded me not to compare Serena and Edwin. Have I EVER!?!? As if they're even remotely comparable!
Anyway, I'm frustrated and confused. We're still hanging in the balance with no dx and no sign of PT changing her mind about our course anytime soon. Edwin, Sr said I should have just told her to give us the walker even though she said it wouldn't be for E but for me. I was put too off guard to say that, but I wish I had. Now she still pushes for every other week PT even though I technically have a choice of weekly...she has made her feelings clear that Edwin does most of the "therapy" on his own since he is an extremely determined child.So I feel, if she doesn't think she should be here weekly, then why ask her to. I'll work with E on my own. Anyway, so we wouldn't see her until not this week but the week after, but that week she has vacation for 2 weeks, which means we're into July before she comes again.
I am considering calling her this week and really pushing for the walker. If there were some available I'd ask for one this week, but I somehow imagine she'll say there aren't any, or we'll try when she gets back from vacation. Or maybe she'll make me feel like a stupid, overbearing, stupid mother again.
So what should I do? At what point do you know a child should try a walker? What are the benefits? What are the downsides? Will it really interfere with his development to introduce it now? Do I get a second opinion? How would I do that? I tried orthopedics, no luck. We have EI and she is the best PT according to a lot of people I've spoken to...the only PhD educated one with the most years of experience. If I switch her I might be stuck with someone not as experienced, or someone useless, like our EI and OT. The only other agency happens to be my employer. They do counseling and EI services. I don't want that conflict of interest. We are saving for a house so private PT would be hard to swing, but we'd do it if it would benefit E. The problem is, how do you know what you're going to get? Most people utililze PT for children under 3 so it's hard to find 3 and under PTs.
I feel like I'm failing Edwin by being wishy-washy on this subject but I am so confused. I'm trying to find info online but I keep coming up with websites advertising or talking about specific walkers. I need some direction...Help please....
