Wednesday, June 6, 2012
I finally got the correct information and was able to schedule Lauren for evaulation for Early Intervention therapies. We'll hopefully be getting physical therapy, occupational therapy and speech therapy. I don't know how often we'll be getting them, but so far it looks like the fact that Lauren has Down syndrome will help her to qualify for everything available. The bad thing is that Michigan's budget sucks (like so many other states) so we probably won't be getting therapy as often as we'd like. We're planning to do private therapy as well and we're hoping our health insurance will cover at least part of it.
I have somewhat mixed feelings about all of this. I am so happy to get started with getting Lauren the tools she needs to be successful. But the fact that she needs extra stuff is hard sometimes.
It's never been a surprise that Lauren would have delays. We found out that she had Down syndrome when I was four and half months pregnant. It feels like we've always known. But knowing that our baby will have delays and having a stranger tell us that she is delayed are two totally different things. You know how you can be mad at your sibling and say whatever you want about them, but the minute anybody else agrees or says anything similiar you're ready to punch them in the face? It's kind of like that.
How will I feel if they say she's significantly behind? Part of me hopes she doesn't show off for evaluation so that we qualify for everything and get it often enough. But we haven't yet had the experience of an outside party telling us she is developmentally delayed. Obviously her diagnosis speaks to that. But even our pediatricians and cardiologists have been so positive and have basically said that Lauren will do things in her own time. This is the first time I feel like her having Down syndrome matters at all, maybe because it's the first time we're seeing someone simply because of her genetic makeup. Every baby sees a pediatrician. We were in the hospital because of Lauren's heart, not her chromosomes (although I do realize that a very large percentage of babies with Down syndrome have heart defects). I recently had to check the "yes" box to a question asking if my child was disabled. That wasn't even hard for me, so why is this?
I am so thankful for the positivity and encouragement. But I'm scared because I know life isn't always that way. So far I've mostly kept my head in the sand, working with Lauren on baby skills to the best of my abilities and ignoring the milestone charts. But for her evaluation she's going to be judged based on the same charts I've been ignoring for the past almost four months.
Notice my wording? I feel like for the first time Lauren is going to be judged for having Down syndrome. These people are here to help her! We want them to tell us she qualifies for lots of services. So why the heck do I feel that way?
I feel nervous the way I feel before every cardiology appointment and every pediatrician appointment. Like I'm waiting for the other shoe to drop. Waiting for someone to tell me that I'm not doing enough or that Lauren should be doing x, y or z.
So yeah, my feelings are mixed. To put it lightly. Any moms with experience in this area- feel free to give me any advice, wisdom or thoughts on this! Am I crazy for feeling like this?