Re: Important behavioral thing

June 30, 2005

Bonnie,

I also got goosebumps reading the CHARGE newsletter. And I

immediately shared it with my daughter and husband. The theme of recent

discussions are I think also the difficultly in coping with the behaviors. I

have found

NO REAL answers or insight to them yet. They are a part of CHARGE and very

hard to deal with.

June 30, 2005

Debbie,

Great Job!

Bonnie, Mom to a 22, Patty CHARGE 20, and wife to

June 30, 2005

i have read alot of the discussion about the behavior issues with

charge and i am curious as too a few things, are there early warning

signs? at what age can they appear? and are there ways to intervene to

prevent the behaviors from escalating. anthony is almost two and is

doing normal behavior things for his age, he is testing us and even

tells himself no,no in sign if he is doing something he knows he

shouldn't be. i do think he has a hyperactive vestibular function, but

it could be soon to tell for sure, but if he does could that have any

bearing on future behavior problems. i just want to be as vigilant as i

can be. thank you.

mom to anthony 23 month old CHargEr

> Bonnie,

> I also got goosebumps reading the CHARGE newsletter.

And I

> immediately shared it with my daughter and husband. The theme of

recent

> discussions are I think also the difficultly in coping with the

behaviors. I have found

> NO REAL answers or insight to them yet. They are a part of CHARGE and

very

> hard to deal with.

>

June 30, 2005

In a message dated 6/30/2005 2:18:59 PM Eastern Daylight Time,

matasker@... writes:

Yes, there are early warning signs.

Yes, you can intervene, because the earlier you do, the better the results.

Hi there,

I am sorry to say our interventions which have been many help

yes but they are not a cure. The behaviors remain and are quite stifling to

every day life. As the parent of an older CHARGE'r I cannot emphasize enough how

disabling they really are.

June 30, 2005

As I am reading the posts I am so happy that people are talking more openly

about the behaviors, because I find people sometimes tend to hide them,

ignore them or pretend they are normal. Yes, there are early warning signs.

Yes, you can intervene, because the earlier you do, the better the results.

You wouldn't have known my son had these behaviors until, one day, he could

talk.

As school has ended I am up against the most challenging behaviors of an 8

year old boy, who is extremely high functioning and relies on structure

(school). He has OCD that going back to when he was very young, I saw

repetitive motions of him hitting his face, watching the same video over and

over again, repetitive hugging, which for a 2-3 year old, can be normal.

However, his OCD behavior began to really peak it head out when he was 4 and

I thought it was just great that he was using his power of language. All

that came out of his mouth was " what comes next " , " I want to go to the

parade in July (it is January), being totally consumed by dates and order.

This went on for 2 years before it got to the point that he got older (age

6) and I couldn't take it anymore, something wasn't right. At the last

conference I talked with Jan Van Dyke who met my son and after sitting in on

the behavior symposiums, recognized his behavior as " checking behavior " ,

part of OCD. Only to find out part of this encompassed his " PMS " stages

where he would swing from happy to irritable in a second, and have fears for

no reason. He was afraid of his own shadow. This OCD behavior consumed his

life. Reading the older CHARGERS posts, I know what I am up against.

I have had support from school, his behavioralist there, and the

neurologist, both who are involved in managing the behaviors to have him

able to function to fullest capacity, which is above grade level. This

includes behavioral modification along with medications. Without the

medications, my son wouldn't be able to function. However, just the

medications alone isn't enough. I am looking for a psychiatrist for

now, for his to begin expressing himself to a professional.

I am lucky my son can tell me he is driving himself nuts. For kids who

can't express that, who show signs of these behaviors, inside they are

crying out for help.

The best thing to do is keep informed through information from the CHARGE

Conferences, talking to other parents and having a good support system

through school.

Thanks for listening to me! As you can see, 1 week off of school has

already put me over the edge. Summer school starts next week so things

should get better.

Debbie Matasker mom to 8 w/CHARGE, 10, andra 4

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