I have a problem.
For the last couple weeks I haven't gotten to bed before 2am.
Once the kiddos go to bed, it's my time to hop on the computer and do my work. I look for stuff to do with Cody for homeschool. I read message boards and facebook groups that deal with Apraxia. I read blogs that cover speech and occupational therapy for kids, looking for ideas that I can use to help Luke. I spend just a little too much time looking for ideas (and cute stuff) on Pinterest. I get sucked into reading one thing after another, and the next thing I know, it's waaaaay past my bedtime. It's made mornings not so fun around here, that's for sure.
So where does the ranting come in? Last night I clicked on Wrights Law and got on the subject of IEPs. Individualized Education Plan. Individualized being the key word there. Luke's IEP is lacking that beginning word, and it's really pissing me off.
The more I read about what should be included in the IEP/IEP process, the more I realized how little they did to help us. His IEP doesn't even list who will be giving his "speech therapy". I can tell you who - someone who isn't a speech therapist. He was instead assigned to a resource teacher. Luke wasn't even evaluated by Child Find. They sent another resource teacher to my home (who I thought was a speech therapist until a couple weeks later when I found out otherwise), to observe him. This observation went on for about 20 minutes. I had to bring up the fact that he was receiving occupational therapy from Early Intervention for his thumb. She made note of that, saying she didn't notice any problems with his thumb. So he's not receiving any help for that. My issue there is that he does sometimes use his thumb as he should....but most of the time he doesn't. She just didn't happen to see the problem during the few minutes that she watched for the issue. And of course, as someone who isn't an occupational therapist, I don't feel she had the qualifications to make that decision.
Luke spent six months in Early Intervention for speech therapy (and OT). In that six months he made zero progress. It wasn't because his SLP sucked, because she didn't. The problem was that kids with Apraxia don't respond to typical speech therapy like a child with a developmental delay would. In EI's defense, we didn't get the Apraxia diagnosis until right before he transitioned out of the program. So to them they were treating a developmental delay, and were doing what was appropriate for that.
When we met with Child Find for Luke's IEP I gave them a copy of the 5 page evaluation that his current private SLP wrote. The IEP meeting was the day before the appointment with the developmental pediatrician (I should have canceled the IEP meeting until after the appointment with the ped, but we were given an appointment with the ped at the last minute when they had a cancellation, so I didn't feel "right" canceling the IEP meeting with such short notice) so I didn't have anything yet from the doctor. But when I mentioned that the appointment was for the next day, and that the private SLP said possible Apraxia, the woman leading the meeting (who happened to be the same woman that came to our house to observe Luke) said that every child entering their program receives the same thing, whether they have Down Syndrome or Apraxia. Does that make sense? Doesn't to me. Apples to oranges.
At the time, we were happy that they gave us 60 minutes a week in our home. I wasn't happy with him getting a resource teacher instead of a speech therapist, but we went with it. I have major regrets for not fighting it then. We didn't realize how much knowledge is required when you go into one of those meetings as a parent. I thought we were prepared, we obviously weren't. It makes me mad though that they put the parents in that position. They are professionals working in their chosen field. They are the ones that made the choice to work with students that need extra help. They are paid to do that profession. And I feel that at least the people we have been dealing with are not following through on that as they should. Parents should not have to cram a legal education in to be sure that their children are receiving what they are entitled to under the law. These people should WANT to do what's right for the child.
The "help" that Luke is receiving from the resource teacher basically entails her sitting at the kitchen table with him for a few minutes, showing him picture cards and occasionally using the iPad with him. Then we move on to his bedroom where the three of us sit on the floor, Luke plays with toys, I interact with him, and she takes notes. It's weird, and it's not helping him. If something like "Luke, say ____" would work, he would be talking by now. If doing a puzzle with him would work, he would be talking by now. I do all of those things with him.
The thing with Apraxia is that someone who has it can't get the words out. It doesn't matter how much you encourage them, prod them, offer them incentives, etc. The motor skills aren't there. It's similar to someone that has had a stroke. It's just not possible, and they need therapy to fix the oral motor skills. Telling a child to say a word over and over won't work. You have to show them how to say it. You have to remind them of how to work their mouth, jaw and tongue to get the word out correctly even after they've learned the word. She noticed that Luke was PROMPTing himself for a few words. I wanted to yell at her, that's what he needs!
Part of my problem is that when I get mad, I can't talk. I literally clam up and just sit there staring at the person while I'm fuming inside. I think it's because I know I'm overly emotional, and if I opened my mouth to say something, I'd probably say multiple things that I would regret saying. Today she started making strange comments while watching him play. She commented that he likes to watch the lights flash on one of his toys. That he shrieks. That he doesn't stick to one thing for very long. She asked me how his tantrums were doing. From the lights comment, I knew where she was going and it just made me more and more mad. Finally at the end, she asked me if I wanted him tested by the school. I asked her what for - her response was "oh, you know...everything". Um, no. I'm not letting him be tested by them, especially if I can't get an answer on what the testing is for. After awhile I flat out told her that he has been evaluated by two different developmental pediatricians, and both said he shows no signs of autism or asperger's. She didn't have much to say to that, but went on talking about his behaviors.
Luke isn't even three yet, and that alone makes him prone to tantrums. Luke is an intelligent boy who knows what he wants to say, but can't get it out. So yes, he has tantrums when he wants someone to understand him, but they can't. Wouldn't you? Imagine not being able to tell someone what you want to eat, drink, play with, when something hurts or you need something, or when there's a show you want to watch or a book that you want to read. Imagine the words and sentences forming perfectly in your mind, but when you open your mouth, it doesn't come out right. At Luke's age he has no other way to communicate (though we are working on sign language, and we're saving our pennies for an iPad for him). Then image how frustrated you would feel. Then have someone try to turn that justified frustration/tantrum into something like autism when you have no other solid symptoms of it. I was so angry by the time she left here.
I've read many cases where Apraxic children are misdiagnosed with other things, Autism being a big one. Apraxic children that are misdiagnosed and put into a classroom with children who have disorders and handicaps much worse than their own. Nothing against the other children who do have those disorders, but it's not fair to the Apraxic child to be put into an atmosphere that isn't warranted by their particular disorder.
I'm closing with an article about a young man that was featured on the Apraxia-KIDS website a couple months ago. His name is Luke as well, and he's an 18 year old triathlete from Australia. He has Apraxia, and his story was told through the website.
Triathlete Luke Farrell Takes on World and Speech Dyspraxia