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(minimum 6 characters) can we get help with little or NO cooperation???

Posted by on Nov. 9, 2011 at 9:43 AM
  • 6 Replies

I have been trying to figure out what's going on with my son, Seth, who is now 5 years old and in Kindergarten. Finally, I broke down and called the Pediatrician. The school wouldn't help, and I knew (in my gut) something was up. I googled everything his symptoms fit into. He seemed to fit into Asperger's and SPD for the most part. However, over time, I watched him and observed that maybe I was over-reacting just a little and kept brushing things off as "phases". Here we are now, 2 years later from when these "symptoms" began, and I am finally realizing...... IT'S NOT A PHASE! I have had little to NO support from my family. So I wasn't sure what to do. I called the Pediatrician to get to the bottom of these issues. We went over everything...including his fears of being alone, the meltdowns, the food issues, the repetative behaviors, etc. Dr came to the conclusion that he needs the evaluation from an OT, however, she "loosely" diagnosed him with SPD. She handed me 2 borchures for OT's in our area, wrote a Rx/refferal and sent us on our way. NOW. we have insurance through my DH's job and it's...not so great. I called them and asked about coverage. HA! well, they sweetly informed me, "your plan does not cover ANY Occupational therapy AT ALL!" Great. So now what? I called his school district back and they were quite rude about it. "Stop making a big deal about this, he's fine, and you're over-reacting. It's a phase." Ok. So WHY then did his Doctor give a Rx to me? If IT'S ALL IN MY HEAD??? I have been taking him to this Dr since he was 1 year and they are never ones to OVER-REACT! If she thought I was, she would say so. I know this. She even pointed out the normal kid things and seperated them from the REAL symptoms. We were there for 90 minutes! So what do I do? I had a friend tell me to try dropping the kids from our ins and try and get them on CHIP since they have better coverage, however that would mean holding off even longer til we can get that. I wat him to get help now. I waited TOO long as it is.

Meanwhile...I can't get him to EAT ANYTHING...and he's been sleeping in our bed since the Spring. Mind you, I have a BF'ing 4 month old baby and a 3 year old daughter as well.

Me (34)-Married to John (32) since 10.30.04...Mommy to Seth 5.18.06 (born 38wťnaturally-no meds!); Gianna 4.25.08 (induced at 39w, GD); Olivia 7.1.11 (born 39w’went into labor naturally 4 days before scheduled induction.)

by on Nov. 9, 2011 at 9:43 AM
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by on Nov. 9, 2011 at 10:33 AM
Hmmm...Is it at all possible to switch schools? I have a picky eater too. Usually I can get him to eat things like Jello and yogurt.
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by on Nov. 9, 2011 at 10:42 AM

you need an advocate for the school depending on where you are you can request a formal ot eval chip is a bad idea simply because they are cutting everywhere ask around some agencies do therapy for a discounted rate if you fall under income guidelineswould they qualify for chip with your ins some time they can get coverage under both again i cant offer much because i dont know where you are at on the food you really need a sensory specialist you can do a lot at home if you can do any research there are agencies to help Families Together or autism speaks are good places to start good luck

by on Nov. 9, 2011 at 11:00 AM

well, jello and yogurt are out. they are too 'slimy". Right now, he eats plain chicken (though it's even an argument with that...he eats the pieces that are "ok) and white rice. He's abandoned carrots, apples, (which he used to LOVE) because of the "imperfections". Today I got him to eat plain cheerios only after watching him pick out half the bowl and toss them into the trash because they were all "broken" or not a complete circle. He's drink iced tea, chocolate milk, and juice boxes. he likes ginger ale but I don't want to give him soda. That's it. I can't get him to do pasta even because it "looks funny". I know he likes pizza but he will only eat it from one pizza place. anything I make or I buy from the store or other pizza places he can tell and will not even LOOK at it. So, right now, it's either dry cheerios or white rice. Even that he leaves most of it to be tossed away later. I have to force him to eat that.

by Wendy on Nov. 9, 2011 at 12:28 PM

I would fight the school to have them cover the OT! 

by on Nov. 9, 2011 at 12:43 PM

 I think I would go to a developmental pediatrition and get him evalutated properly.  Most schools won't cover OT with just a SPD dx.   I would go to a specialist and see if he doesn't have autism. 

by on Nov. 9, 2011 at 1:58 PM

Your best doctors for getting a diagnosis would be a neuropsychologist or a developmental pediatrian, if your insurance will cover it.  My kids were diagnosed by a team of doctor's at our local Children's Hospital's neuropsychology department.  They did a thorough evaluation and provided an accurate assessment of the problems I saw in my child.  We had previously seen a neurologist and a psychologist who insisted my children were fine.  We later saw a developmental pediatrician who didn't think my kids had any concerning issues, either.  Of course, all three of those doctors made their "diagnosis" without actually testing my children or listening to what I was telling them about their symptoms.

Testing is very expensive.  Thankfully we had good insurance that covered my kids' testing.  Depending on where you get an appointment, you may also be on a waiting list for awhile.  We were on a waiting list for over a year at one place and about 6-9 months at another place.

The schools are required to provide testing if you put in a formal, written request, BUT it doesn't mean that they are skilled, qualified professionals and/or that they are motivated to see the same problems you see.  Additionally, even if they note some developmental issues, they are only required to provide services if the developmental issues impact the child's schooling.  So, for instance, my son has speech problems which require speech therapy.  The school refused services because his speech patterns don't inhibit him from participating in class and other people can understand my son (even though it takes a long time for my son to say what he wants to say).

The biggest help our diagnosis has provided so far is the accommodations at school which allow my son more time to do his work, places to go if he gets too overwhelmed, and a social skills group he participates in.  The school never helped him with OT (despite his terrible handwriting due to motor skills), speech, or many other things that would have been beneficial to him.  My school was actually fairly cooperative.  They just don't provide services if you can't directly prove that not having the services negatively impacts your child's schooling experience.  I'm sure that better supports would make my child's schooling experience better, but it's true that he is still getting a relatively "adequate" education without them.

Depending on your insurance, sometimes therapies are covered under "autism" that wouldn't otherwise be covered.  Both of my sons need speech therapy, but only one gets it because he is on the autism spectrum.  Insurance will cover the speech therapy for my son with Asperger's (autism spectrum) but not for my other son who doesn't have autism.  If your son gets an autism diagnosis, you can check with insurance again to see whether they'll cover any of the therapies under an autism diagnosis (which includes SPD) instead of a stand-alone SPD diagnosis.

In the meantime, you may want to check out some books at the library to get ideas on how to work with your son, to help with some of his SPD and other behaviors/symptoms.

Best wishes.

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