Tuesday, August 30, 2011

Speech Therapy - A Mama Reflects and Rants

Yesterday was Luke's last day of speech therapy with his Early Intervention (EI) speech therapist (SLP).  To say that I'm not disappointed with his progress in the EI program would be a huge lie.

I loved his SLP, I really did. She was very nice and Luke adored her.  But I struggled the last few months with how I felt about the therapy that he was receiving.  Speech therapy through EI is not what I expected at all.   It was basically Luke playing with random toys in our living room, while the SLP sat with him, and would try to get him to say basic words.   Up, down, help, more, etc.  Even the amount of time given to us was disappointing. We started out with one hour every other week.  Luke would do well the first week with trying new sounds with us, then the second week wasn't as productive.  The SLP talked our EI coordinator into giving Luke 30 minutes every week.  That went on for awhile, but again, it was frustrating.  By the time she got settled in with Luke and did a little speech therapy, it was time for her to stop and fill out the form giving us instructions on what to work on for the rest of the week.  Out of those 30 minutes, he probably got 15 minutes of solid one-on-one time.  Not nearly enough.

At one point the SLP told me that she felt Luke needed more structured therapy, but that she was limited by what EI would allow her to do, which was the play based therapy.  She came in one week gung ho about being more structured, EI's standards be damned.  Had me find certain toys and items, and we spent one session at the kitchen table.  The next week I was ready for more of that, but it was never mentioned again.  It was very frustrating and confusing.  A lot of that went on - she would give us instructions on what to do, but unless I mentioned it the following week, it was never brought up again.

Then all of the sudden, the last two sessions the SLP busted out with the type of therapy that I had been expecting.   Modeling how to say certain sounds. More structured therapy. It had me wishing that she had done more of that over the course of his time with her.

I'm looking back at how he has progressed over the last seven months, and I'm sad to say very little. Yesterday's session was the same as the others - she was trying to get Luke to say up, down and help. I almost cried sitting and watching Luke struggle with the word up. You can see it on his face, he's thinking about it and wants to say it, but it doesn't come out right.

That of course is the apraxia. Kids with apraxia know they're saying the word right in their head, but they also know that what comes out isn't right. Which makes them hesitant to try, and when they do, there's lots of groping. Along with lots and lots of frustration on their part. It tends to lead to a good meltdown. It's very difficult to watch, not to mention heart breaking.

So here we are, done with EI. Where do we go from here? Luke starts seeing the PROMPT instructor that evaluated him last month, in a couple of weeks. He'll see her once a week for 45 minutes throughout September until we can get the insurance coverage figured out, then go from there. If insurance will accept the neurological diagnosis and cover his sessions, we get 100% coverage (minus $10 copay) for an in network provider. 80% for out of network. The SLP that he will be seeing in September is out of network.

The EI SLP mentioned us coming to see her privately. I'm torn, because I was happy with the last two sessions, but I'm very unhappy that it took us this long to get to that point. I realize she was stuck with what EI wanted her to do, but still. I'm not sure how a SLP can go through therapy with a child week after week knowing that the method they're using isn't working.

Luke will also be seeing a resource teacher with our county's public schools once a week for an hour. Yes, a resource teacher, not a speech therapist. I am completely disgusted with our county. I don't know how you can take a child that has been receiving SPEECH THERAPY for the last seven months, a child that was recently diagnosed with a neurological disorder that is causing their need for speech therapy, and stick them with a resource teacher. I have very little hope for how how much he will progress, and will be ready to yank him from the program if they're not willing to give him the right kind of therapy once we get rolling. I refuse to waste time on therapy that will not help him. Which is how I view the last seven months.

To continue with my rant on the school system, during our IEP meeting a few weeks ago, I of course asked why he wasn't getting a SLP. I was told that the county gives everyone a resource teacher to start, whether they have a speech delay or Down Syndrome (complete lie). They were also nice enough to mention many times that we are more than welcome to go with private therapy in addition to their services. Let's discuss the cost of private speech therapy. In our area, it runs from $100-$150 per hour. Kids with apraxia need 2-3 hours PER WEEK of intensive therapy. Most insurance companies won't cover speech therapy at all, because by law the school system is required to provide these services at no charge to the parents. So what do you do if the school isn't giving you the right kind of therapy, and your insurance company won't cover? You look for every single grant that you can find. And you pretty much go broke. But what can you do? He's worth it.

Our school system is failing kids like Luke. Kids that don't respond to typical speech therapy because they have a disorder instead of a delay are just out of luck in their eyes. The seven months that Luke spent with their version of speech therapy is a huge example - he did not respond to it, and he won't. By law the school is required to make an INDIVIDUALIZED education plan for every single child, and they aren't doing that. And people wonder why I'm refusing to put my children into their public school system.

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