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Sensory issues

sara291sara291 Posts: 1,042
edited November -1 in Parenting and Life
Riley has always been a handful but over the past two years things have become noticeably more difficult. I've talked to his preschool almost daily last year on how he was doing and my issues I'm having with him and ideas and I've also talked to his dr. I had his school counselor keep an eye on him and she thought he might have a retained newborn reflex (the Moro one). Teachers had also noticed poor self-regulation skills. I talked to his Dr who referred him both to an OT and to a counselor. It took months to get in! His counselor is a student one since all the others is full and is nice but no help at all. She just keeps saying ADD/ADHD symptoms can look different in every child when I tell her I don't think that's it and that the first step to helping him is teaching him plan B thinking. I at this point don't think we'll get to far until we figure it the actual root of the problem. The OT so far has noticed his does not have one dominant side. He is left eyed and footed and right handed. Today (his 2nd appt) she said that he is very unaware of his body and that he is 0% or 100%. (Zooming and just ALL over he place) typically its 100%. That when he did balance tests he had a hard time being aware of controlling his body. She isn't sure how about his emotional outbursts since she doesn't see it but says that they usually are related. She thinks he needs to go to another clinic since she only has one small room and the other has a big gym. After the appt next week she'll call his regular dr and I think I'll make a follow up with him at that point and then see about changing his counseling referral to another place. I know some people have some experience with this sort of stuff and was wondering if anyone has any input/advice. The OT said that we can possibly try there other OT place if this is the direction I want to go. It threw me off a bit. I thought I'd get more definite answers. Next week she'll schedule to talk to me more since the last two visits were mostly just focused with him and talking was a little hard for us. He is just such a handful and mixed that with Z who has ADHD but is doing SO much better now with meds and our hands are very full (plus a baby and toddler and my disabled sister in the house). I've been trying to figure out what's wrong like I said for 2-years-now and I think all that's happening is he is slowly getting worse. How do others start this process?

Comments

  • KariKari Posts: 1,765
    edited September 2015
    It is very, very slow. I started by getting an appointment with his pediatrician in which I documented my concerns and requested a referral to a developmental pediatrician. In my area, it takes about 6-8 months after the referral to actually get the appointment. After the initial appointment, there were two testing days with a psychologist. The first day they were testing his academics, and the second day they administered an autism screening test. The psychologist and developmental pediatrician met and discussed the tests, then I had another appointment with the DP in which he got his diagnoses (ADHD & anxiety). Now, they didn't screen for the sensory issues because this practice didn't have an OT on staff. I probably should've asked for that somehow.

    Prior to this I'd contacted our state agency for child development and had them screen him. They noticed a couple behavioral red flags but felt overall that he was on par to where he should be. Honestly, they were no help whatsoever, and this was two years before we visited the DP.

    Once he was in school I requested an IEP referral and he then finally got the right testing (OT doing some sensory testing), but because his academics weren't being affected, he doesn't qualify for services. Honestly, they did the most thorough testing of anyone and even recommended some additional testing they could do, like seeing a pediatric eye doctor to look at tracking issues when he wasn't learning his letters and numbers.

    I'm not much help. I seem to have gotten the runaround after trying three different routes. There was a glimmer of hope when I learned that OT isn't a stand-alone service. You have to have a different "qualifying" disability of some sort. Speech is a common one, so if you can get your child qualified for speech services, they often get the other services they need as well. There are different types of speech services. Juliet qualified because her pronunciation is poor, but other kids I teach qualify because they can't process speech they hear correctly, or they have a time delay between when they hear something and when they process it, or they might even have issues understanding how to enter a conversation. It's not just how clearly they speak.

    What I did learn was that if something wasn't working, walk away and try someplace else. Justin worked for a bit with a psychologist in play therapy that I thought was absolutely useless because his ADHD prevented him from benefitting from the conversations she was trying to have with him. He thought he was only visiting her to play, so we left.

    Along the way I discovered that it was his diet that was affecting a lot of his behavior, sleep, emotional equilibrium, etc.
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