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lmh2402
05-14-2011, 10:37 PM
has anyone had an eval at an "OT gym"?

we recently had a speech language eval that resulted in recos that we go for an eval at an OT gym

of course, this all feels horribly confusing and circuitous, since the speech person is saying she thinks DS has sensory issues.

while we are currently in the process of being phased out of EI b/c they used to think DS had sensory issues...than they said he didn't.

so. confusing. :banghead:

anyway, just wondering what to expect?

Gena
05-15-2011, 04:25 PM
I'm not familiar with the term "OT gym". Can you explain what kind of facility it is? DS has been evaluated at a private therapy clinic, where he received both speech therapy and OT. I guess the OT room could be compared to a gym. Do you mean a place like that?

DS has fine and gross motor skill delays, so his OT eval included standardized assessment of those. The sensory eval was a questionnaire that I filled out and an interview With the OT.

DS gets APE (adaptive physical education) at school, which is kind of like having OT/PT with a gym teacher. (He also gets OT at school, but does not qualify for PT.) So maybe you mean something like that instead?

Indianamom2
05-15-2011, 07:21 PM
I don't know if this is the same thing that you are referring to, but when DD recently had her sensory issues checked, she saw an OT at the local hospital's children's therapy center. Her entire evaluation took place in two "gyms" where there was all sorts of equipment including a slide, swings, bikes (trikes), balls, mats and a big foam pit. All she was being checked for was sensory issues.

It's all a little (or a lot) overwhelming, isn't it? To try to learn all the lingo and navigate all the therapies and evaluations and terminology is just enough to make your already worried and harried mind just feel totally overwhelmed.

Hang in there and ask lots of questions and mention everything. I have started taking the approach of just saying, "I'm going to tell you every little thing I can think of, in case it's important." Because quite honestly, I don't always know if something is important to the therapist/doctor or not. So now they probably get more info than they want or need, but every once in a while, something jumps out at them that I didn't necessarily think was that important.

snowbunnies300
05-16-2011, 08:51 AM
I too have not heard of an OT gym. Most therapy places have rooms that look like a gym with all of the equipment.

egoldber
05-16-2011, 09:04 AM
I think the SLP was just using an off the cuff reference to an OT therapy place which can indeed look like a gym.


while we are currently in the process of being phased out of EI b/c they used to think DS had sensory issues...than they said he didn't.


Is it the EI speech therapist who is recommending the OT evaluation? I would NOT let them phase you out without asking for more and thorough evaluations. Especially with the incidents you've posted about lately, I would ask for a behavioral expert to do an evaluation as well as the OT.

lmh2402
05-16-2011, 08:09 PM
i am so tired. today was like a visit to hell and back.

so, an OT gym is pretty much what i think you all were telling me - it's a room in a facility that has a rock climbing wall, a few different kinds of swings, lots of different tactile stuff, and on and on and on

evaluator was very nice. DH was home today so the three of us went and DH spent first 15 min playing with DS in waiting room while the evaluator talked to me - asked questions, got history. she had asked me to send her a copy of our EI IFSP, all reports from docs and other evaluations and their massive intake form last week. so she already had a pretty good handle on our route so far.

she then had us all go into the room. and after about five min she asked DH and me to try and leave b/c she said DS was getting distracted by us - he kept running over and trying to show us stuff.

we left and i thought it was going well. i heard him laughing. and yelling. but whatever, in all it seemed ok.

after an hour they came out and she said he did well. he came out happily and seemed fine. and she was trying to talk to us, saying that he was showing clear signs of having some vestibular issues and pretty much zero threshold for frustration, and a few other things.

but before she could explain in depth, DS totally. totally. totally melted down. i don't know if maybe the session was too overwhelming for him. i know the purpose was to sort of push and test him to see where his boundaries are, right?

well, she must have pushed the right buttons b/c i kid you not. it was like a scene from a horror movie. it was JUST like what happened the other night with the bath (if you saw my post in the lounge). except, he wasn't naked and we weren't home.

it took me and DH. literally two of us to get him out of the building and into the car. i was going to try and ride it out in the building, but he started attacking people in the place - grabbing another little boy and hitting hm, pushing the evaluator and screaming "go away." attacking me and DH. it was awful.

so we got him in the car. and he screamed the entire 30 min ride home. and i am not exaggerating. i wish i was. and it continued once we got home. DH was stunned. he screamed and cried and threw himself and anything he could get his hands on.

his screams were like guttural sounds and his face was once again on fire. it stayed that way all day.

he lost his voice. he sounded like he had laryngitis for the rest of the day.

i can't even remember how or why he finally slowed down. but when i looked at the clock and he was calmly sitting in my lap, it was 12:40 and we had left the place at 11.

he was extremely short-fused for the rest of the day. and nasty. hitting and pinching for no reason. throwing his water cup across the room. he attacked our dog for the first time ever. literally tried to grab him and hurt him on purpose.

i don't know what to think.

the evaluator said that she was reco'ing OT twice a week. DH is making me nuts b/c despite being witness to today, he is now saying he thinks that we are getting conflicting feedback from EI and why do i want to believe this woman over EI?

in the bath tonight, DS has so many bruises on his body from the last few days i swear if someone were to look at him they might think he was being harmed by us.

i am at my wits end and just feel like bawling my eyes out.

he went to sleep tonight screaming that he wanted to wear his "car blanket" (sleep sack with car on it). but he also wanted his green sleep sack. just in the crib with him. and he wanted grey socks on. only grey.

i. can't. take. much. more.

Gena
05-16-2011, 09:20 PM
:hug: Hugs.

I'm sorry you had such a rough day. I've had times like that with my DS too. It's hard and can be so discouraging.

It sounds like the session was challenging and exhausting for your DS. When my DS has new experiences that take a lot out of him, he often melts down for the rest of the day too.

Try to hang in there.

It's OK to say that the sleep sack and the socks are not battles worth fighting. If these specific items make your DS feel better, let him have that comfort.

Indianamom2
05-16-2011, 09:37 PM
Oh my goodness. I am so sorry you're dealing with so much right now. The only silver lining in all this is that this time you had witnesses and hopefully now you can get some help or at least get headed in the right direction.

One thing that is making your son's tantrums worse is his lack of verbal skills. As he begins to talk more and be able to verablly express more, some of the tantruming will hopefully ease up a bit.

It is so hard when you're doing everything you can and getting all sorts of opinions and researching and learning about so many different things, trying to piece everything together. You want answers right now, but there aren't easy answers. And it's absolutely physically, but even more, mentally and emotionally draining to be where you are.

Hang in there and know that you are being the great mama that your son needs. You're doing the hard work to be able to get him the help that he needs. He's a lucky little boy and he will be okay. :hug:

elliput
05-16-2011, 10:06 PM
:hug::hug::hug:

I'm sorry the day was so rough for you. Your poor little guy had a very sensory rich day and obviously didn't know how to handle all of it at once. I have seen my own DD become overwhelmed like that, and it is heartbreaking because there really is very little we can do to help them sort through all of the information that their body and brain is trying to process.

You will be receiving a written evaluation from the therapist/evaluator, correct? I think once your DH sees everything spelled out, he will understand why it is important to get your DS into OT as soon as possible.

egoldber
05-17-2011, 09:12 AM
:hug:

Can you call the OT and ask her about what happened? I would ask to please include that observation in her report.

Was this evaluation part of an EI evaluation?

lmh2402
05-17-2011, 01:16 PM
thanks, guys

i had a long-ish call with the woman who evaluated DS yesterday

i told her that DH was openly questioning "what is sensory processing disorder?" and "what is therapy for this kind of thing/what does it look like?"

she directed me to this website (http://www.spdfoundation.net/about-sensory-processing-disorder.html) for some overview info and she stressed that the examples here are "just examples" that no one kid is going to exhibit all...or even any...of the examples listed.

she also said we should read "the out of sync" child. we have the book (two copies, actually) and started reading it awhile ago. but then EI said he definitely didn’t have sensory problems, so we both stopped reading. will need to start again.

she said, "without question. 100% i am sure, based on my professional experience and opinion, that (DS) is experiencing self-regulation dysfunction. his behavior is not that of a typical two year old. and there is a chemical reason/component to it and we can help him with that...so he can learn to self-regulate better. your son doesn't feel happy when he's behaving that way. and it breaks my heart to hear your husband or anyone one else (early intervention) say that his issues are behavioral. yes, you could probably train him with lots of yelling and bribing to try and 'keep it together' for a reward (like watching tv or getting a cookie)...or conversely, to avoid punishment, but why should he live like that. he feels disorganized and out of control, and as a result, he acts out. if you can help him through therapy start to regulate his body's chemical response...so he can feel better...i would ask you to please, please consider doing that. i assure you. i promise you. as a rule of life, 2-year olds do NOT seek out opportunities to be so unhappy. their nature is to be happy and to learn and absorb from their environment. i have over 12-years of training and professional experience and i've also got two kids. your son is struggling to be 'typical-2.' is he the most severe case i've ever seen? absolutely not. would i even term him severe? no. but i would say he's got a definitely moderate case of SPD going on and he could use some assistance. you should ALL benefit from him getting some therapy. and i don't think he would be requiring long-term help here. i think/hope that 4-6 months of therapy twice a week could make a world of difference. and i'm happy to discuss this further / explain better and more directly to your husband, if he/when he wants."

there will be a written report, but she is behind on reports by about 3 weeks. so we can either wait for the report…she schedules a meeting with the parents to go over the report in detail. or we can start therapy now and then still have the meeting once the report is ready. i spoke with DH and he agrees that he thinks we should start.

we had another “incident” this morning. same thing – from 0-60 out of control… over not getting his diaper changed. he woke up fine and happy. but obviously soaking wet – having been in a diaper all night. when DH said “let’s get changed,” it went downhill fast and furious. i’m convinced that the only thing that saved us from another round of non-stop hysteria was my mom arriving. it started in his room. then DH brought him downstairs thinking it would calm him down. but it didn’t. i eventually got in the shower b/c i was going to be late for work. in the meantime, DS insisted on going back upstairs – DH followed behind but didn’t want to fight him on the steps. DS ran into our room and was trying to scramble into the shower – i was showering at the time. DH was trying to remove DS from the bathroom to go get changed when my mom showed up.

my mom watches him on tues. she had let herself in and come upstairs b/c of all the screaming. He took one look at her and he was able to break out of the cycle. ran to her and she was able to change him and restart the day. i don’t know what the h*ll is going on, but I am hoping that if we start therapy later this week, we will be on a path toward improvement b/c the way it is right now is seriously not sustainable.

beth, no this not through EI. this was private. i wish it was through EI (though, i think the quality is much better through this place/woman), b/c then we wouldn’t be paying through the nose. maybe it’s not that much, but it feels like a lot - $600 for eval and $140/session…time twice a week. it hurts. not easy to pull off. but we feel like we have to. it just sucks that EI is kind of just sitting there asking me, “oh, what happened with that eval? What do they reco? oh, that’s interesting.”

WatchingThemGrow
05-17-2011, 01:27 PM
Sounds like you have a found a great person to work with who has experience and can help guide you in finding the support your family needs. I'm sorry you're going through it all. :hug:

JTsMom
05-17-2011, 02:15 PM
:grouphug: You're doing all the right things.

Your insurance won't cover the eval or any of the therapy?

I would definitely have your DH chat w/the therapist and possibly go to some of the sessions to observe. That has helped a lot here.