Musings of a Marfan Mom

The Speech Therapist’s Evaluation

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Monday morning I called the speech therapist’s office and by a true miracle, they offered us an evaluation for Menininho THAT AFTERNOON. I just about broke down crying on the phone, I was so grateful that it wasn’t going to take the predicted 3 months.

The evaluation took an hour and a half. The speech therapist was nice enough, although she did a few things that made me think I wouldn’t want her treating my son full time (like telling me he could play w/ a certain toy and then immediately scolding him for it, which set off 2 minutes of hysterical crying, and spending the WHOLE session trying to make him play with a toy he did. not. want.). In the end, she told me that he has a moderate delay in 3 areas: speech, language, and cognitive. He’s functioning at the level of a 9 month old, which is 6 1/2 months behind his age. He also seems to have hit a plateau and stopped adding new skills at around 9 or 10 months, as opposed to steadily improving just at a slower rate than he should be.

The therapist explained that the test she administered is not predictive. This means that although it identifies a problem, it can’t tell us how severe of a problem that is. Menininho might catch up in all areas with a few months of therapy, or just one area, or none of them. If he quickly catches up it was just a delay. If he doesn’t, it’s some kind of disorder (like auditory processing disorder or severe receptive language delay). The only thing everyone has ruled out at this point is autism.

Menininho needs therapy sooner than later. I was informed the hospital has a 3 month waiting list and while he would be put on it, I would do well to find him a private therapist instead. He also needs to see a developmental pediatrician, which will take 1-3 months. I’m calling about that today. Apparently county services (Early Start) are for kids ages 2+. I am waiting for a confirmation on this but you can bet I will fight them tooth and nail to get my son in. Not only are they free, but they come to your home.

But just in case, Mark and I immediately started looking into private therapists. Here’s the thing though: they don’t accept insurance. Can you believe that??? How elitist is that? Not every child who needs services can get them free through the county, for any number of reasons. Even the kids who do get services may not get enough. For instance, the author of a book I read over the weekend talked about how her county’s program would give her son therapy twice a week, but he needed four times a week, so she had to find a private therapist instead. You might wonder “how expensive can therapy really be?” The place I called, which seems to be most qualified to handle someone with Menininho’s issues, charges over $150 an hour and that’s pretty average. It’s a lot more than that for an evaluation. Another place charges $150 an hour to put together the progress reports…so about $300 every time you need a print out of what your kid has been doing.

I am confident we can work out reimbursement with our insurance company eventually. They’ve been very good to us so far. But battling insurance for reimbursement takes a lot of medical literacy. I have spent years cultivating this skill…I even went and got my Masters in the area, but it still sometimes baffles me. It is a SKILL though. MANY people who would be able to get reimbursed for services don’t because they don’t know how to fight the system, or are so busy working that they don’t have the time. It’s not like most insurance companies are shouting “hey, we have this cool program!” from the rooftops.

I’m not going to get into a huge debate on universal healthcare, but just think about this. All of you who say that if people just worked hard enough they could afford their care, that healthcare shouldn’t just be “given away,” please tell me what else we should be doing. If my husband and I are in the minority of Americans, with advanced degrees and a good job, where my husband works 10 hour days, plus health insurance, and we still might have to fight to get reimbursed and front a lot of money in the beginning, what about everyone who isn’t as fortunate as we are? How are they supposed to get these NECESSARY services for their children? Do they not deserve it? Should their children be forced to get farther and farther behind?

Sorry if this post is kind of all over the place. I’m just really, really tired. Hoping to get insurance approval by the end of next week so Menininho can start services in mid-June. If we can get him into a local grad student program though, that will be even better. 🙂

POST EDIT: I just got a packet to fill out from the county. Not only does it not say anything about an age 2 minimum, but it talks about kids ages 18 months. I think that speech therapist fed me really bad info! Filling it out tonight, then waiting to see if Menininho qualifies for the next step in evaluation with them.

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