Where to begin...

About 3 yrs ago I noticed everytime dd gets super excited she flaps her amrs in excitement, kinda snaps her fingers and makes an "O" with her mouth. She is going on 6 this yr. It hasnt stopped. if I took a snap shot of this excitement one might think it was autism but it stops within seconds and it started around 3. Dr thinks it could be sensory related not sure. Tried a neurologist and she just said she would grow out of it. Well she hasnt. Dr and I talked about seeing an OT. he recommend Island therapy in deer park. I called and they said insurance companies do not recognize sensory and do not cover sensory so its 500 for the eval and they make cover 70 dollars of it. i thought 430 dollars was ALOT to only be evaluated and not help with the situation.
2 questions:...Is this the normal pricing? and does anyone have any ideas what may be going on for her? any techniques or what not to eliminate this behavior?

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We used island for ot therapy. Peggy is very good. Have your ped write out a script for fine motor delays and it will probably be covered.

You can always get free evals from cpse or cse if you contact your school district. She may not qualify, but you'll have the eval.

As for the behavior, I don't know that I would worry unless you think it's getting in the way of learning, or life in general. It could just be a quirky thing. You could try to ignore it, or redirect it.

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Your school district can do the evaluation for you and it should not cost you.

Unless this behavior is having an effect on her learning or social aspects of every day life I really wouldn't worry about it. It may just be one of her "quirks" that makes her unique!! : ).

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I am confused. I contacted the school and they told me that they do not do any evals. They told me that OT's from the outside come in after the child is already diagnosed with whatever it may be.

Also, in regard to island. Is this the place in deer park bc I called them the other day and they told me about the 500 dollars and most insurances dont cover. if its not then can you give me the link?

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She is in Kindergarten? Does this affect her in school at all? you could call the Committee for Special education to ask for an eval.

But you can also go to a developmental pediatrician that takes insurance for an eval.

We used Dr. Tina Narayan at Cohens Childrens hosp. But there are other who take insurance ( though a waiting list).

I would not pay that much for an intial eval unless I was seriously concerned about daily life altering behavior. there are other starting points imo.

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Unless it affects her ability to access the academic curriculum, the school system is unlikely to help.

I have a friend whose son flaps, but is not on the spectrum at all. A neurologist at Johns Hopkins diagnosed him with stereotypies (stir-AH-tuhpeez). It's a motor movement disorder. Youtube stereotypies- you'd be amazed at the number of typical kids who do this...

This link was super helpful:
Stereotypies

Message edited 3/3/2012 11:52:34 AM.

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Posted by dm24angel

She is in Kindergarten? Does this affect her in school at all? you could call the Committee for Special education to ask for an eval.

But you can also go to a developmental pediatrician that takes insurance for an eval.

We used Dr. Tina Narayan at Cohens Childrens hosp. But there are other who take insurance ( though a waiting list).

I would not pay that much for an intial eval unless I was seriously concerned about daily life altering behavior. there are other starting points imo.

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Have you tried giving her an alternative behavior such as high fiving a friend or tapping her foot instead of flapping? If you could shape them into more socially appropriate behaviors it would lessen any social impact. Is she aware that she is doing these things? It is very difficult to fade them if the person is unware that they are even doing it. It does sound like typical neruologial overflow/sterotypies.

Here is a research article I found:

http://www.bioline.org.br/pdf?pe10021

Message edited 3/3/2012 6:24:12 PM.

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The behaviors you described definitely sound like stereotypies, especially the fact that you can distract her from the behaviors. My girlfriend took her son to Johns Hopkins and they told her it can't be treated with medication, but that he could do behavior modification once he turns 7. Before 7 it's not recommended to call too much attention to it as they just don't have the ability to control themselves the way an older child might. In the meantime she was told to redirect him when she can and to not make a big deal of him flapping.

My understanding is that while he'll always have the *urge* to flap/move, as he gets older he'll develop more socially appropriate ways of getting that energy out (like tapping his fingers or foot). That's the positive of being cognitively *typical*.

Also, other more common stereotypies include nailbiting and hair twirling. That made my friend feel better because TONS of people do that. Her biggest worry was that people would think something is wrong with him. She still deals with those feelings from time to time, especially when she's out in public as he tends to really flap when he's anticipating or excited about something.

I would email Dr. Singer's group at Johns Hopkins and find out if there are any doctors in NY who specialize in or are highly familiar with motor movement disorders. It seems that the team at JHU are extremely well versed in diagnosing and treating them.

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a friend of mines son used to flap like the wind... i mean he would fly..

as he got older he learned to control it...

nothing was wrong with him, he is perfectly normal 8 year old. there are times when he is home he flies, but when he's out in public he has it very much in control.

its probably a quirk

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From what you are describing, your dd is trying to regulate herself from the excitement of "vestibular" input. Even if she is standing still, watching other things move provides her with vestibular input. (ocular/vestibular system, for example gazing at a ball being thrown up in the air gives the sensory system the same input as it would if your dd was actually moving). This vestibular input is activating her senses and she is seeking proprioception to calm herself (hand movements, give feedback to the joints, as well as her facial expression, give feedback to the oral motor muscles). And since she herself isn't physically moving she is not getting the natural calming of proprioception. If she was the one doing the gymnastics, she probably would be regulated since her joints would be involved.

Personally it sounds like her sensory system gets a bit overstimulated, but it doesn't sound like full blown sensory processing disorder, (where it impedes functionality) so I doubt she will get any covered services.

You can try to give your dd a lot of proprioceptive activities before gymnastics. (even a bath prior to the class could maybe help?) Have her wear spandex type clothes, (tight fitting), and explain to her that when her eyes recognize movement it excites her, so instead of flapping, maybe she can exert pressure on her hands by doing some subtle little movement you both can come up with (like clasping her hand together and moving fingers rhythmically or even have her twirl her hair)

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