How much O/T and with who?
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|Tue, 11-10-2009 - 3:57pm|
Hey there. My name is Serena, and my son Michael (who's in the process of getting his official ASD diagnosis) turned two on Halloween. He's doing ABA now (started last week) 3 times a week for 3 hours a day. We've got an SLP coming twice a week for an hour each time. Soooooo, here's my dilemma.
We knew that Michael had sensory issues from the time he was 6 months old....only then we called it the mushy disease. He wouldn't eat baby food, and after giving it a good college try (about 6 weeks of him spitting it all out), we moved on to finger foods. Once he was mobile (about 10 months), it was obvious that his issues went beyond oral, as he didn't like grass or other things touching his legs/feet. Once he was walking (15 months), he was on his toes 99% of the time, and by then he was mouthing EVERYTHING. He will put just about any non edible item in his mouth, but when it comes to foods, he doesn't do mushy or cold. No bananas (no fruit, really), or anything like applesauce or icecream. Doesn't matter what flavor it is....I shoved some cake frosting in his mouth on his birthday because I figured he'd make an exception for yummy....but it was a no go.
Anyway, the most disturbing part came when he had his first major setback that told me that he had been affected by autism. He lost all of his consonant sounds (besides m), and 99% of his speech (he'd been babbling, with no traditional words) was replaced by a moaning/humming noise. It seemed obvious that he was doing it to meet some sort of oral need that he had, and even more obvious that we needed to do something to meet that need if we were ever going to get back on track with his language.
So......in August, I forced his ECI service coordinator to request a sensory evaluation. (She called me an alarmist for 5 months as Michael lost nearly all of his communication skills and has since been replaced by an actual SLP.) This girl asked the P/T on Michael's team (the team that came out and evaluated him for ECI before his big loss, when he just had a mild language delay) to come out and do the sensory evaluation. I was annoyed, because I figured that if he'd end up needing an O/T to come out and do occupational therapy to meet his sensory needs, why have a cross-trained P/T come out and do the evaluation. Anyway, the P/T did a great job with the evaluation, but I stuck to my guns and asked that he see an actual O/T for the therapy. Enter ECI red tape......skip forward to yesterday, when the O/T finally showed up and did no evaluation (that's why we were told we had to wait up to another 45 days, so she could do her own eval). She spent a good 30 minutes buttering me up, and I should have suspected what was to come next, but she caught me off guard. She spent a good amount of time downplaying any/all of my concerns for Michael, and fortunately, the SLP (who was also there) started to speak up and defend Michael's needs and the severity of his issues. Finally, this O/T said that she would be happy to serve as a facilitator, but that I was perfectly capable of doing the O/T myself. I was shocked. It was completely laughable, and had I not fought so hard to get her here, I would have shown her the door at that point. She said it was wasteful to have her come out and act busy (those were her words) when I could do the O/T myself with her guiding me (by phone....LOL). Anyway, after shaking my head at her in disgust, and arguing with her for a good 15 minutes about why it was in Michael's best interest to have an actual expert working with him (I told her I could also do the ABA & speech, but it wouldn't be in Michael's best interest), she finally said (in kind of a disgusted tone), "So you want me to come out here once a week?" I said yes, only because I was not about to waive Michael's rights to the services that he qualifies for. He's got a serious sensory issue. The P/T said that unless we addressed it, we were going to get nowhere with his speech. I believed her, and I should have just stuck with her....but I had such a bad experience with the first girl who was Michael's service coordinator who just set us back 5 months while calling me an alarmist and telling me that he'd just be one of those kids who started talking at 2.
So now to my question (for those of you kind enough to stick with me). How much time should I fight for when it comes to O/T and my kiddo with sensory issues. Besides the mouthing (which is constant), and the humming (which is often), he's also running, and throwing himself against the couches a lot. He's started chewing on his fingers and his clothes last week, but that may be due to the fact that he started ABA, which would be a huge adjustment for any 2 year old. Is an hour a week going to be enough? In my situation, would you fight for the O/T to be replaced? Should I eat crow and beg the ECI director (who I fought with to get an actual O/T) to please send back the P/T to do the therapy? She was actually really great.....I just didn't want someone who was crossed trained and fascinated with O/T, I wanted someone who specialized in O/T. I just didn't expect to get this......hmmmm, how should I say this delicately.......lazy good for nothing?? Ya, that'll do.
Any thoughts, suggestions would be greatly appreciated!