How much O/T and with who?

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Registered: 10-23-2005
How much O/T and with who?
4
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 (She called me an alarmist for 5 months as Michael lost nearly all of his communication skills and has since been replaced by an actual SLP.)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!

Serena

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Registered: 09-12-2008
Tue, 11-10-2009 - 6:51pm

What a horrible OT. If your son qualifies for services...he qualifies...and they have to give him that service. We did OT with EI for awhile...and then we did private OT...and the private OT was a waste of time.

Our EI OT showed us a ton of things to do for sensory issues. She developed a sensory diet for Gabe and gave us ideas for meeting his oral sensory needs. With her guidance we eventually gave up EI OT.

I agree with your son's OT to a point. A lot of sensory things can be addressed at home with the intervention of parents and other family members. The part I don't agree with is you have not found a way to help your son yet. This is why it is important for her to meeting with you to show you and teach you how to help your son.

Stand up for what you believe in. And yay for not letting the EI team push you around.

Your story sounds so similar to my little guys story it's not even funny. Gabe's a was a little different though. His service manager felt he was very much on the spectrum....but the DT/OT said no way...and hanging my head in shame....I also said no way.

It is wonderful that you are doing ABA....I think you will really start to see a difference in your son. We didn't do ABA...but we did floor time instead.

So....yes....go after OT...it will really help you and your son. And if your son is having fine motor problems...the OT can work on that as well.

What are you using to help ease communication frustration?



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iVillage Member
Registered: 10-23-2005
Tue, 11-10-2009 - 11:15pm

I see what you are saying with the O/T not playing as major of a role as a parent, but this girl just wanted to phone it in. It's interesting, because she used those words, "Sensory diet." Her main goal though was to get me to agree to having her write up a plan for Michael and then allow her to wash her hands of the whole thing. She suggested that I do wheel barrow walking with him, and I actually tried, but he wouldn't support his weight with his arms.....so later, when she tried to make me feel stupid about not just doing it myself so she could just phone it in and not do her job, she said, "Well, can't YOU do wheel barrow walking with him?" I said, well, right now, I quite obviously can't. Stupid, stupid woman.

What's nice is that the SLP came back for therapy today, and for once, I was thrilled that Michael was asleep. I said, he's sleeping, but I need to talk to you anyway. She knew EXACTLY what I was going to say, and she said that she'd mention her concerns about yesterday's meetings to the director of ECI, but that it would be best if I did the same, and that it was within my rights to request either another O/T or to just go back to the P/T who was so eager to work with Michael in the first place. I would kick myself for making a stink about her not doing it in the first place, but there was nothing wrong with me wanting an O/T to do O/T. But, as it turns out, the O/T blows, and I'd rather have someone who is totally eager to work with Michael than someone who's qualified but disinterested. Shame on her. I'm a teacher, and there's nothing worse than a person in that position to make such a huge difference....who phones it in.

Anyway, on to your question, and I'm not sure how to answer it. When Michael regressed at 19 months, he went from being mild mannered to being mild mannered and checked out unless you were entertaining to him. His sense of humor regressed to that of an infant, so he's all about the physical humor. Anyway, because he's a little disconnected, and a lot laid back, he hasn't started (yet) to show signs of frustration. Since he's not doing a ton of communicating at this point, it's not as though there's anything for him to get frustrated with anyway. It's a blessing and a curse at this point, because of course, I'd love to see him start to communicate. However, he doesn't tantrum, and he doesn't really fuss a lot. I've worked really hard to reteach him that I could meet his needs, and he is just starting to show signs that he gets that now. I worked on training him to bring me the remote when he wanted to watch Sesame Street, and next, I was going to teach him to bring me his shoes to go outside. But what I found in the meantime was that he's just started bringing me things on his own now. As a matter of fact, yesterday while that awful O/T was here, he walked over to me with two books and plopped his behind in my lap. Tonight, he dragged this huge Barney stuffed animal into the living room from the other side of the house and gave it to me and just stared at me with a gleam in his eyes. I spent about 10 minutes making Barney bite his hand as he kept shoving it in his mouth and giggling hysterically.

Anyway, my news of the day was that the school district's autism team will be out here in exactly one week to formally/officially evaluate Michael. I am hoping with every fiber in my being that he scores in the mild range. I know that we've got a long and difficult path to walk, but man, it would be nice to hear that it's not going to be the longest, most difficult path possible.

Thursday, I go to the SS office to try and see if we can't get Michael benefits. I know it's probably a losing battle, especially since (not due to lack of trying) he still doesn't have his official diagnosis. Still, I figured that it would be better to keep the appointment that it took me over a month to get, and at least have a contact that might be willing to work with us and see to it that he gets the services that he needs.

I still haven't heard back from Medicaid, and it's been 41 days. They have 45. Nice, right? I called and left 3 messages last week with my local office (they won't answer the phone....I tried all week), and when I called the national number, they said that my case was localized, so that they couldn't even tell me if it was in the system. All I want to hear is that his case is actually in process. Well, that and that he's going to be able to receive services. The fact is, there's a great O/T program here that I can access privately that has a good sensory program designed specifically for ASD kiddos. They take Medicaid. Also, there's a university program for preverbal kids that Michael is on the wait list for. I believe that they do floor time therapy. He's 3rd on the wait list, and it's likely that he'll come off of it in January, and THEY also take Medicaid. It's 2 1/2 hours a day, Monday through Thursday, and it would mean bumping ABA to the afternoons, and possibly cutting down on nap time. I could also move one of the M-Th ABA session to Saturday mornings so that he'd only have both therapies 3 days a week. I don't know. I don't want to push him harder than he's able to really be pushed, but I don't want to lose the opportunity to really maximize his therapy while he's still so young and flexible. All I hear is early, intense therapy is Michael's best chance, and if I can give that to him, I'm going to.

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Registered: 09-27-2007
Wed, 11-11-2009 - 6:47am

It's great that he is not frustrated. My son regressed also...right after turning 2. He was behind on speech at 2 but completely withdrew from us shortly after 2. It took until after 3 for him to be dx'd with autism. But some of that was resistance on my part. The biggest thing I remember about Gabe regressing was his complete loss of facial expression. His eyes looked so sad. Even now sometimes his eyes look so sad.

EI is very important for kids on the spectrum. I think that's why Gabe has done as well as he has. We started EI as soon as we noticed a regression.

Gabe is in the mild or high function end of the spectrum. He has his days where autism is very very pronounced. Like yesterday...he spent his entire day stimming. He wanted nothing to do with anything.

Gabe didn't start getting frustrated with talking until we made demands for him to communicate. Then it was on. We started using PECS (picture cards) at 31mo and then Gabe moved on and started using a computer to communicate.

It is a long road....but the reward of seeing your child succeed is worth the long trip.

Don't give up on OT....follow your gut...and if you switch back to the PT...that's okay...it's better to have someone that cares then the loser that came to evaluate your son. Phone therapy....that's pretty funny.



Jessie mommy to Gabe(4.4 years ASD/CAS/SID)and baby Zane



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Jessie Mommy to Gabe (5.8 yrs old ASD, CAS, SPD) and Zane (1.10 yrs old ESD)

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Registered: 03-09-2009
Wed, 11-11-2009 - 9:36am

Hi


My Daughter (2.5yrs) is not on the autism spectrum...but she has lots of sensory issues/hypotonia and motor planning issues.


I read your post and while I do believe there is so much we can do in the home around OT work, it is so important to have a professional help you determine what your son needs.

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