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Behavioral modification training

Posted by on Dec. 10, 2012 at 7:32 AM
  • 12 Replies
We have an appointment with a psychologist at children's for this next Monday. I'm not sure what to expect, but I'm hoping he can help us.
Backstory: we had zack, our oldest, evaluated at Children's this summer for autism. Almost 3 years ago we had him evaluated thru the state and got an educational diagnosis of aspergers or high functioning autism. He was getting ot and pt. We needed a medical diagnosis because the school wouldn't cover his therapies anymore since he'd aged out and we were homeschooling. Our insurance only gives like 10 visits a year and he's on Medicaid which doesn't cover at all. We'd applied for ssi and a Medicaid waiver program and were denied. So right now he recieves no therapy since school let out for summer. It's starting to wear on him. He really needs the services. Anyway, the dr we saw at Chikdrens refused to acknowledge any of his problems. Mind you he's made considerable progress in motor skills through therapy, but he still deals with social interaction issues, as well as sensory processing, auditory processing, and behavior problems. He does stim regularly but they didn't see it. So, they gave us a diagnosis of developmental delay, which gives you nothing by the way. I immediately asked for a second opinion and he's on the wait list for another dr but its a year long and Medicaid won't pay for it for a year anyway. A friend hooked me up with a sn advocate who gave me the number for this psych and told us to book for the behavior modification training. She said he's the head of the autism program and will be able to see zack for what he really does deal with.
I'm sorry this is so long. It's been a long journey for us. We seem to do nothing but hit walls. If he won't help us, I don't know what else to do except wait the next 6 months or so until his bane comes up on the wait list and he gets an appointment. Part of me is scared too, that if I keep chasing and fighting for what my kids need, they're going to turn me in for munchousens. But how do you just give up? Anyway. Keep us in your prayers please! And if y'all have any advice, I'd love to hear it!
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by on Dec. 10, 2012 at 7:32 AM
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Replies (1-10):
by on Dec. 10, 2012 at 8:14 AM
Good luck. We've never been through this. I will put you guys in my prayers.
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by on Dec. 10, 2012 at 10:35 AM

Sorry its been a rough road. I have had to deal with similar issues regarding my son's therapies. Anyways you can wait and it is frustrating, you can ask his old therapists for exercises that you can try to do at home etc..

You don't give up you have to keep fighting. And it does get tiresome. When you were denied for the waiver program did you appeal? Or try again with ssi? Have you tried some special needs sports?

I know a young man that he stims a lot on a daily basis even during the sports games. But after a few years of him doing it he is doing loads better with everything he is behind in.

You may have to try and video his stims and behaviors and show the doctors. Prove to them that it is real an its happening and you want to know how to help him. I have had to do videos of my son for his teachers and his doctors even a few times with his therapists.

Good Luck.

by on Dec. 10, 2012 at 11:04 AM

In my prayers-your family is-

by on Dec. 10, 2012 at 3:38 PM
I hope you're doing well. My son is a regular at chop. We are waiting as well to get into dev mental peds. Im petrified they won't see what we see. His neuro Dr, pediatrician, 2 behaviorist have told me he will be diagnosed. I just want him to get the services he needs. I also have an appt in Delaware in Feb since the wait is so long at chop. I understand hitting walls. That's all i seem to do. I don't know about your child but mine is very verbal. Very smart. Just very aggressive wants to interact but usually is a bit awkward and he has sensory issues. Good luck
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by on Dec. 10, 2012 at 5:30 PM

I hope that everything goes the way that you need it to in order to get the help he needs!    

I know what you mean about munchousens. Lots of members in my family think that I am a hyperchondriac when it comes to Lina. Then I am proven right that she has a problem and I got her seen but at the same time I wish that I had been wrong. I have talked and talked and talked somemore to finally get the dr's to listen to me and then send me to the right place.

My Second time around & loving it!
boy n girl     toddler girlLina

The Twins

by on Dec. 10, 2012 at 6:02 PM

You are the Mom and you know best!  Keep fighting and we will cheer you on!

by on Dec. 11, 2012 at 12:13 AM
i noticed little stuff with my 11 yr old n pre-school with trying to write and do stuff that had to b done sequentially, etc. but wz told she wz fine because she could read. by k she could still barely write i went to schools looking for help.... long n short she's 11 yrs n just got diagnosed. she has p.d.d. (autism spectrum disorder), a processing learning disability, is bipolar, a juvenile manic. n petite mal epilepsy.
god blessed us bc she was approved for ssi on the first try. she is now n special ed n hz adaptive equipment for school - franklin speller ,calculator , more time on the computer , untimed exams n standardized tests. she has therapy at school w a psychologist. plus a psychiatrist, etc.

i'm rattling on to show u what we got accomplished after a 6 yr struggle with the schools. so u cannot gv up. keep researching n demanding answers.
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by Darby on Dec. 11, 2012 at 5:14 AM

Big hugs mama!  Good luck!

by on Dec. 11, 2012 at 6:22 AM
Good luck! I'm sorry you have had to fight so hard to get a diagnosis and help. It breaks my heart to hear that. Being a parent of special needs children is hard enough without the added stress of fighting those who are supposed to help. (((Hugs)))
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by Gold Member on Dec. 11, 2012 at 8:33 AM
Thanks ladies. I really appreciate it. It's ridiculous the way this system works. I have therapy evals, letters from therapists, testing results, everything! And they just told me he would out grow it. And they blamed his lack of social skills on the fact that e homeschool. Because we all know that means we lock him in a room by himself all day. It's just frustrating. I'm hoping this guy will look past that, see the behaviors and actually help us!
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