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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Wednesday, June 6, 2012

Upcoming evaluation


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?

4 comments:

  1. I completely remember that feeling and you are not crazy! There is worse news though. At this age it will be more on your answers then her performance. They are going to ask you 1000 questions and it is really hard but you need to answer them conservatively. The way I manage my feelings about these meeting is to keep reminding myself this meeting is to get you services to help Cate be the best she can be later on, it isn't really a true picture of how awesome she is now - the eval is about the services not her potential. I learned at my first eval to be very careful with my answers because the first time we didn't get any services because I was way to positive and she scored to high, I had to go back and fight for them after the fact. Now I always answer questions "yes" or "no" - if they ask a question about a skill and Cate does it all the time I say "yes", if she has only done it once or twice or hasn't in a long time I say "no". It also helps me when I get the results say this is the most conservative view of Cate, I know she can do more. Also think of some concerns and voice them no matter if you think they are normal developmentally or not. Is she spilling milk as she drinks or making odd sounds (ST services), favoring once side of her body (PT services) - make it a concern. You have to show you feel you need services to get them.
    Good luck and take it easy on yourself - this is just a paper report, you know how great she is doing so don't let it bother you. (easier said then done I know!)

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    1. Thanks Lisa! It's hard for me to NOT be super positive, it's my coping mechanism to focus only on the positives. Thank you so so much for the advice, I really appreciate it.

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    2. Thanks Lisa! It's hard for me to NOT be super positive, it's my coping mechanism to focus only on the positives. Thank you so so much for the advice, I really appreciate it.

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  2. Good luck! In my experience with the state of Florida, they praise how wonderful she is doing and find every way possible to give her the highest scores they can, in order to avoid giving us services (because of budget cuts.). I always go in crossing my fingers that Kennedy will not show off, and that as much as I always focus on what she can do, not what she can't, I make those meetings about everything she can't do, just to get the most out of them. So far, I haven't had a lot of luck getting therapy, and much of what we've done has been private. I hope you have better luck!

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