Sunday, June 15, 2008

Happy Father's Day (but more of a post about Edwin and PT)

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....

6 comments:

Jennifer said...

It's really hard being the advocate against everyone else sometimes...

But... in order to reduce the stress in your life about this decision perhaps you can try to reach a compromise with the therapist? Tell her that you want to see 'XYZ' by the end of the summer and if he doesn't achieve that you get to request whatever assistive device you feel Edwin needs?

That way it'll give the PT the chance to work on it while giving you the chance to step back and try to work on what she's saying he'll eventually do on his own?

A few months isn't going to make a huge difference in the terms of his long term development...

Arianna continues to have gross motor problems and I'm sad now that i spent so much time obsessing over when she would do something and now feel that I missed out on watching her really learn how to do things herself - the stress I created for myself made me look at her development differently (negatively) and I can't get that time back. I won't make the same mistake twice...

Good luck either way!

abby said...

Hey Steph,

I have no experience with walkers and PTs, but I have plenty of experience with questioning specialists.

This is what I would do: I would try to get an independent PT evaluation done by a physical therapist and/or developmental pediatrician at the best Children's Hospital in the area that handles this stuff. I would want another eye on EJ and another opinion from an outside specialist.

While I agree with Jen that a few months may not make a difference, I am a HUGE believer in mommy instincts and I know that you are a totally rational, very level-headed person with extremely good instincts that have served you (and your great little kids) very well all along. So go with your gut, and see if you can get another opinion here.

That's just my two cents. And let me just add one big hug to that.

Mommato4miracles said...

Just wanted to say we are praying and hoping for the best for Edwin. I obviuosly haven't been in the place you are in with development, but if you are really certain that you don't agree with your PT, I would get a second opinion. YOU not her are the one with him 7 days a week and you see how he is developing. If she isn't at least willing to listen to you and let you explain your concerns (whether or not you have a PhD or not) and then at that point explain her rationale behind her decision, then find someone who can make you understand what is going on. THere are plenty of specialists out there, and you are his best hope for finding the answer. Love and prayers to all of you. Give them kisses from us

Emily said...

I agree that perhaps a second opinion is worthwhile. It seems there are many different trains of thought when it comes to assistive devices. Our PT was of the same opinion as your PT. Dakota was even farther behind than Edwin at his age and still she didn't feel like a walker was necessary which was very frustrating to me. She insisted on us using push toys which were much less stable and more difficult for Dakota to control.

The walker certainly won't hurt the situation and it may in fact help. When I finally talked our PT into giving Dakota her walker she did fabulous, far better than we ever thought she would and it helped tremendously with her coordination and desire to walk. I think this can vary from kid to kid for sure but even if it's for you, it might be worth letting the PT think you're a whiny parent just to try it out with him. Our PT had one that she simply let us borrow so we didn't have to go through the hassle of getting fitted for one and waiting for it to come in.

But even if she won't rethink her side and you can't get a second opinion, he may surprise you still. A lot of therapists I know wont do assistive devices until 2yrs which isn't that far off for Edwin. Since he's still technically within the normal range for beginning to walk (up until 18mos adjusted) maybe waiting until that window has passed and he's more clearly delayed you'd have a better chance of convincing her.

Randi said...

She may have the Ph.D but you're not a dim bulb either.... You are Edwin's mother. Unfortunately, you may have to just let her think what she might think and just push for the walker. Let her think it's because of you, etc. The doctor may have experience, but you have your son and I think you should go with your gut. What is the harm in trying??
Let us know how everything goes...
Randi

Kellars Mommy said...

I wish I knew more of what to tell you, when I went for Kellars 1st pt eval I was told he would need a walker to walk, Kellar had low tone in his trunk area, sitting was difficult for him, no protective reflexes and surely no correct crawling. I obsessed for months over when he was going to do this, when should he be doing that, and honestly looking back on all that now I wish I hadn't have. The days I spent holed up in a room working endlessly with Kellar on crawling, sitting,catching himself is days that I will never be able to rewind, I was to focused on what I thought Kellar should be doing instead of thinking about what he was capable of doing at that point in time. Kellar cruised furniture for a while before he ever attempted a step, he one day walked from one piece of furniture to the next and then that was it, we didn't get that out of him for months, I seriously thought that a few steps was all he had in him, I was questioning my sons capability but looking back and thinking about it he was doing all he could do at that time and I was pushing him to do something he wasn't ready to do.. when he finally started walking his balance was awful and it took him time to figure it all out and start doing things. Sometimes we as parents are so ready for our kids to do what the charts say they should be doing that we want to do something right then, I can't speak for you but I know that I allowed myself to lose sight of how much Kellar had accomplished and how far he had come at times. I am not saying that you compare S to E, but I would feel safe in saying that it has to be hard watching one of your children practically go off and leave the other behind, that has to put a lot of pressure on you as a mother and you feel that you need to do all you can do to get E up and moving. I think you are a awesome mother, you want only the best for your children. I do agree with getting a 2nd opinion, it can't hurt anything and maybe it can put you more at ease..