Tuesday, August 26, 2008

Met with Regional Center people today

This afternoon our service coordinator from Regional Center, Amber, came over with a physical therapist to evaluate Finn and start putting together a plan for therapies for him. Amber was very nice. The physical therapist . . . eh.

She pretty much rubbed me the wrong way. First of all, I just didn't find her to be very warm. She was very no-nonsense. Which I guess has its place, but I'd do better with warmth at this point. She started talking about "these kids" and their "low muscle tone." First off, don't pigeon hole Finn right off the bat, okay? "These kids"? He's not one of "these kids" - he's Finn, and he's MY kid. I didn't say that, of course, but it was in my head and wanting to come out of my mouth. What did come out of my mouth was this: "But wait! Finn has great muscle tone! Everyone has commented on it - the nurses in the NICU, his pediatrician, the lactation consultant I've been working with - everyone!" She just looked at me and said, "Well, I'll be the judge of that." Bad day, lady? Jeez. I told her how he's been rolling over since he was 3 weeks old, and when she looked at me like I was crazy (it is crazy - a 3-week old baby rolling over?!), I told her I have it on video to prove it. Know what she said? "It was probably an accident, a fluke." I said, "No, he didn't just do it once, he does it all the time." She said that sometimes they squirm around and by some trick of reflex, they manage to get themselves rolled over. Now, this just pissed me off. Rolling over is a developmental milestone under normal circumstances. What is she saying - that it's only a developmental milestone in the case of a child with Down syndrome as long as he's reached at least a certain age? Before that, it doesn't count? I just felt like she was raining all over our parade. Why not celebrate the achievement instead of downplaying, or even discounting it?

After evaluating him, she admitted that he has very good muscle tone. She also commented on the fact that he really doesn't look like a DS baby. I told her that we've begun to suspect that he may actually have mosaic Down syndrome and that we're contemplating having a more thorough genetic workup done. She just said, "Chromosomes don't lie." Huh? I got the impression that she was implying that I thought the initial genetic workup that was done was mistaken, and that I thought maybe he doesn't have DS after all. I told her that's not the case, we understand that he has DS, but that we also understand that there are different types of DS. So then she argued for a minute or two about how many types of DS there are. I almost felt like she felt that I needed to be put in my place or something. She explained the different types of therapies available, what she would recommend, etc., and at one point said, "With all the therapies available, these kids typically do relatively well." Relatively well? Why couldn't she offer a little more hope than that and say "really well"?

Michael thinks I'm being too negative about the whole thing. I admit that I am hyper-sensitive about everyone's choice of words right now, and I'm probably hyper-sensitive about lots of other things that I don't even realize. But really, I think she could have been a little more positive, a little more empathetic, a little warmer. Michael said that she probably just doesn't want us to have unrealistic expectations. Maybe that's true. But I want to expect great things for and from Finn. Why shouldn't I? And who is she or anybody else to take that away?

Fortunately, this lady will not be our actual physical therapist; she was just the one who came out to do the initial evaluation. So we talked about the purpose of the physical therapy: at this point the goal is to build his core body strength in order to enable him to achieve basic gross motor skills over time - rolling over (ha!), sitting, crawling, etc. Eventually occupational therapy will be provided as well, which apparently overlaps somewhat with P/T and also covers fine motor skill development, self care (like dressing himself, brushing his teeth, etc.), and some other things, and speech therapy will also come into play at some point. We'll start out with P/T, and we were given the option of doing an hour a week or two one-hour sessions per month. We're going to start with just twice a month.

I'm having very mixed feelings about all of this. On the one hand, I'm grateful that all of this is available, and of course I want to give Finn every opportunity to meet his highest potential. On the other hand, I still feel resistant . . . um, no thanks, I don't want to join that club. It almost makes me laugh - really, he's going to get therapy to teach him how to get dressed and brush his teeth? Jeez, I could name a few of my other kids who could use "therapy" in those areas as well. I don't know . . . it feels a little like "hyper-parenting" which I've never been a fan of. A friend of mine said something recently when we were at the park together with our kids: "A little benign neglect never hurt anyone." That's more my philosophy. Not that I neglect my kids, but I've never been one to be in their faces all the time, purposefully stimulating them, playing Bach and Mozart to up their IQs and all that. I expect them to do their own homework, and I don't "babysit" them while they do it. Joey wanted to roll across rooms as a means of getting around until he was close to 10 months old, rather than crawling - so what? Who cares if they don't walk until they're 14, 15+ months old? I never have. But it's all different with Finn. With him, apparently I have to try on a new parenting hat.

Oh, and after the physical therapist and Amber left today, Finn rolled over from his tummy to his back 3 times in the span of about 15 minutes. I don't care what that lady says, she's wrong. He doesn't like being on his tummy, so he rolls onto his back. That takes all kinds of skills: motor, certainly muscle strength, and cognitive, because he decides he wants to do it and then gets his body to do what his mind wants it to do. I'm not going to let her convince me that this isn't meaningful.


Razzle Dazzle Mom said...

I don't think that you are being hyper sensitive about it, that woman's comments would have really bothered me as well. Glad she had to admit that he did have good muscle tone. :) Hope the appts go well and that the actual physical therapist has a little tact and a lot of hope!

T-rex said...

She's a bitch, it's not just you being hypersensitive at all. She should know that parents with new babies need a little extra compassion, I HIGHLY doubt you're the first parent to walk through the door and not be happy-go-lucky about your kid's possible issues. And not BELIEVING you?! I mean, come on, she can be professionally skeptical without essentially telling you you're either lying, delusional, or high.

As for the benign neglect, AMEN! That's my parenting philosophy too in terms of just being relaxed about the pace kids go so I am NO help on the 'managed' parenting thing, I automatically recoil from things like speech therapists, developmental specialists and the like - it gets my hackles up. But if it's the best choice for Finn I KNOW you'll not only adapt but take to it thoroughly. You'd do anything for that boy, even if the evaluator makes you want to smack her and then run for the door.

And YAY FINN for the rolling. That is superb. Lilah just... um.... spits up everywhere. And falls asleep during tummy time instead of trying to do much of *anything*!

Anonymous said...

Sounds like someone needs to work on their bedside manner!

I'm no expert, but from the way you describe it, it does sound like a conscious decision to roll over. I was wondering if his tummy still feels a bit uncomfy or something.

Anonymous said...

I babysat Finn for a bit today and yes, the kid rolls over! He also makes lovely eye contact and is just adorable.

I say just go with the flow for now. Sure, you'll have to deal with this, that, and the other things, but since no one's a fortune teller and no one knows what the future really holds, why not just take it as it comes for now. I'm in love with every single one of those kids. Sigh..

Carla said...

Still in the basement :-(, so not much time. That woman sounds awful; I hope that she is new and needs training because that is the only excuse for her cold, nasty behavior. If she is burnt out of her job, then someone needs to step in and get her back on track. That you had to put up with her was the one of the last things you needed. Thinking of you, as always. Go, Finn. I think he has started rolling over just to live up to his middle name; he's getting physically ready for his musical debut. Has Michael put a guitar in his hands yet?! LOL

Jodi said...

I've seen the video proof - Finn definitely is way ahead of the "timeline" for rolling. I would have been so enraged by her comments and demeanor!

I think these kind of encounters are going to prepare you for all the future people you encounter who underestimate Finn or discount his achievements as flukes. You will be better prepared to deal with them because of surviving insensitive people like this PT and the doctor in the hospital.

doulamom said...

Call her boss and let her have it.LOL I agree with t rex.. Total bitch! :)

Remember I yelled "hey he's turning over" too! It's wild but it's for sure because he wants too.