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Hi Debbi,

Welcome to the list. My mother raises my brother's three kids. He's there --

sort of. He usually works out of town. But when he's in town, he's like a

fourth kid and not much help.

Good luck to you,

Sissi

Kids' Page

http://www.isoa.net/~nitetrax/original.htm

Boone's Art Page

http://www.isoa.net/~nitetrax/bart.htm

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> My name is debbi and I have been living with my 3-1/2 year old grandson for 3

years. <

welcome debbi. i think it's really great that you are caring for your grandson.

are you looking at adoption?

> Nine months later, he's back here with us, but we've lost all this time in

getting him treatment. <

ugh, i'm sorry you lost so much time, but i'm SO glad he's back with you where

he so obviously belongs.

> Does anyone here homeschool? Does it work? Do you get any support from the

state? <

what state are you in? they all have different laws. i can set you up with some

links, if you're interested. i don't homeschool anymore, but i used to. there

are also quite a few other moms on the list who have or are doing it too.

good luck and again, welcome!

" Something important to remember...we'll always be who we are. " - Mr.

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>> Does anyone here homeschool? Does it work? Do you get any support

from the state? <

>what state are you in? they all have different laws. i can set you up

with some links, if you're interested. i don't homeschool anymore, but i

used to. there are also quite a few other moms on the list who have or

are doing it too.

I am in Arizona. I would love links. I just can't see him in a school

situation where there is even more than one child to get the attention

of the instructor.

debbi

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Welcome Debbi!

Nice to meet you and " Buster "

You're a good person for doing what you are doing with your grandson!

I don't have any homeschooling advice, but as far as the schools go...for

some it is a very tough ride.

Good luck to you.

Looking forward to get to know you better.

Penny :-D

Hello

Hello,

I am new to the list. My name is debbi and I have been living with my 3-1/2

year old grandson for 3 years. (Long complicated story). " Buster " was born

with a subdural hematoma. We spent the first year of his life trying to

ensure that it had cleared up and wasn't going to cause long-term

complications, it appeared it wasn't. I worked with him to make sure that

his arms and legs wouldn't be stiff and watched for seizures (thank goodness

there were none).

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> I am in Arizona. I would love links. I just can't see him in a school

situation where there is even more than one child to get the attention of the

instructor.

debbi <

oooh, whereabouts? janae is in phoenix, maybe she can help you with some of the

specific school laws. i don't know about az, but i know that in many places you

can get a 1:1 aide for your child. maybe you can look into that as well.

ok, i will look for some links now...

" Something important to remember...we'll always be who we are. " - Mr.

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Hi Debbi,

I'm a newbie too, but from my own experience here, it seems that all

the states handle it differently. I live in Kansas and the school

system here has been WONDERFUL. They have a special early childhood

intervention group who is staffed with various child development

specialists (speech therapists, ot therapists..etc. and its all

through the school system. I pay nothing out of pocket, its all

state funded. They come to my house, and they even come pick up Zach

for playgroup (we live 10 miles away). They bring special toys for

him to play with at different intervals that I can keep at my home

till he's ready for a new toy. If the need is still there at school

age, they have a special program for that too, although they try very

hard to intergrate special ed kids into regular programs as much as

possible. I have more trouble dealing with the school with my

daughter than I do with Zach at this point. Glad you're here, I hope

you get LEGAL guardianship of your grandson. I'm glad he has you.

> Hello,

>

> I am new to the list. My name is debbi and I have been living with

my 3-1/2 year old grandson for 3 years. (Long complicated

story). " Buster " was born with a subdural hematoma. We spent the

first year of his life trying to ensure that it had cleared up and

wasn't going to cause long-term complications, it appeared it wasn't.

I worked with him to make sure that his arms and legs wouldn't be

stiff and watched for seizures (thank goodness there were none).

>

> By one year he appeared to be a normal, yet extraordinarily active

child. He would coo and babble, but words did not develop by the age

of 2-1/2. We went to the doctor and she thought he had autism but

sent us for a round of tests to make sure he could hear, didn't have

complications from his subdural hematoma, and wasn't just ADD.

>

> Well, the work we had set up was interrupted by a brief interlude

where Buster's mother decided she wanted her son and just took him,

mind you, without any knowledge of any of his problems that we were

working on. Nine months later, he's back here with us, but we've lost

all this time in getting him treatment.

>

> At first, when I was told autism, I was having no part of *that*

diagnosis. No, it wasn't that, it couldn't be. But since he's been

back in our house, I see the classic autism signs. He fixates on

repetitive behaviours and the other day when I worked with him on

talking he was trying so absolutely hard to do it, but with his eyes

rolled up to the sky and a determined look, he just couldn't get his

mouth around the words. Finally he began spinning.

>

> We have an appointment with a pdoc in 2 weeks. Finally things will

at least get started.

>

> As to the post I read about having the schools deal with special

services for these children, I was disappointed in that. I don't like

the school system and what in the world makes them qualified to deal

with a medical problem? I have an appointment with them in 4 weeks...

they may not like me... so what.

>

> I wonder about putting kids in a school situation. I don't like it

at all. Does anyone here homeschool? Does it work? Do you get any

support from the state?

>

> Thanks for listening

> debbi

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>>You're a good person for doing what you are doing with your

grandson!<<

Nah! I'm just doing what is right for everyone involved. :)

>>I don't have any homeschooling advice, but as far as the schools

go...for

some it is a very tough ride.<<

I figured that. I just hope I can keep my mouth shut before they figure

out why they aren't going to like me. :)

Thanks for the welcome.

debbi

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>>oooh, whereabouts? janae is in phoenix, maybe she can help you with

some of the specific school laws.<<

I'm in Tucson. I need all the help I can get here. I'm so new at this. A

one to one aide does sound good, but I never liked public schools even

for so-called " normal " kids.

debbi

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Hi Debbi;

I felt the exact same way you did, but I put (3 years 2 months) in

the school system when he turned 3. Not sure about AZ (used to live in

Phoenix, and my brother lives in Tucson), but here they have a special

autistic classroom. Matt's class has a teacher and 2 aides. There's a

total of 5 kids now, there were 4 until just after T-giving. It really

seems to be working out well for him. He is non-verbal, and has severe

anxiety around other kids, and they are working with him, helping him to

cope. Just kind of wanted you know that it CAN work. :-)

ellen

RE: Hello

>> Does anyone here homeschool? Does it work? Do you get any support

from the state? <

>what state are you in? they all have different laws. i can set you up

with some links, if you're interested. i don't homeschool anymore, but i

used to. there are also quite a few other moms on the list who have or

are doing it too.

I am in Arizona. I would love links. I just can't see him in a school

situation where there is even more than one child to get the attention

of the instructor.

debbi

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>>The only thing is to educate yourself to the teeth, know your rights,

and be

prepared to perservere.<<

Oh, I'm prepared. I've told Child Protective Services to get lost AND

got a written apology from their office. I'm prepared, I just don't want

the school to know that up front. LOL

debbi

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Hi Debbi,

I homeschool. That is part of my problem with getting services around here.

It's a long messed up story. I am told that I can't get services because the

kids are not in school and so forth. I have pretty much been doing everything

on my own. I read a lot and so forth and do a lot of speech therapy myself with

the kids that need it, I work on OT as much as I can (it is so painfully obvious

that two of the older kids need it, the school recognizes that they need OT but

I am homeschooling and therefore they *can't* do anything.) I really wouldnt

trust the schools here to watch a hamster let alone teach my kids.

I didn't have any help or any dx for Savannah when things were the worst with

her and somehow we got through it all. She hated being hugged or anything when

she was little, now she will give hugs (has to be on her terms though). She has

come along way with no outside intervention from " specialists " or formal

education and her psych swears up and down that whatever we are doing is the

best thing for her and that we have done more for her than anyone could have.

I know that if I have made that sort of progress on my own with her than I can

help the other kids in the house that need it. Sometimes it is just

frusterating and overwhelming. Sometimes I wish I had that outside help

(although I don't wish to deal with know it all, patronizing, therapists and so

forth that are going to tell me that the kids should be in school for forced

socialization. I swear if someone says that to me one more time I will freaking

kill them! That is the biggest bunch of bullshit I have ever heard. Yea,

forced socailization for a child that can't handle it. Like I want to deal with

that emotional and mental anguish). Sometimes I think that outside help would

make things easier. I could be horribly wrong.

I just do what I do and don't look back. I quit questioning myself on it all a

while back. I see the progress that has been made and I am afraid that

something formal where the kids are not on their time table but someone elses

would cause regression.

Ok, I am done babbling here.

BTW Debbi, I am Georga. I have seven children (everytime I say that I picture

Mel Gibson in the Patriot announcing that. " I have seven children. " Yea Mel,

and your point is? :0) Hee hee), 5 girls 2 boys. One that is dx'd ASD, three

more that we think are on the spectrum. I homeschool. That is pretty much it.

Georga Hackworth

UBAH Educational Consultant

Enter to win $50 worth of free books at www.ubah.com/F1549

Start your own Usborne Home Business in December for only $59.95! Ask me how!

Hello

Hello,

I am new to the list. My name is debbi and I have been living with my 3-1/2

year old grandson for 3 years. (Long complicated story). " Buster " was born with

a subdural hematoma. We spent the first year of his life trying to ensure that

it had cleared up and wasn't going to cause long-term complications, it appeared

it wasn't. I worked with him to make sure that his arms and legs wouldn't be

stiff and watched for seizures (thank goodness there were none).

By one year he appeared to be a normal, yet extraordinarily active child. He

would coo and babble, but words did not develop by the age of 2-1/2. We went to

the doctor and she thought he had autism but sent us for a round of tests to

make sure he could hear, didn't have complications from his subdural hematoma,

and wasn't just ADD.

Well, the work we had set up was interrupted by a brief interlude where

Buster's mother decided she wanted her son and just took him, mind you, without

any knowledge of any of his problems that we were working on. Nine months later,

he's back here with us, but we've lost all this time in getting him treatment.

At first, when I was told autism, I was having no part of *that* diagnosis.

No, it wasn't that, it couldn't be. But since he's been back in our house, I see

the classic autism signs. He fixates on repetitive behaviours and the other day

when I worked with him on talking he was trying so absolutely hard to do it, but

with his eyes rolled up to the sky and a determined look, he just couldn't get

his mouth around the words. Finally he began spinning.

We have an appointment with a pdoc in 2 weeks. Finally things will at least

get started.

As to the post I read about having the schools deal with special services for

these children, I was disappointed in that. I don't like the school system and

what in the world makes them qualified to deal with a medical problem? I have an

appointment with them in 4 weeks... they may not like me... so what.

I wonder about putting kids in a school situation. I don't like it at all.

Does anyone here homeschool? Does it work? Do you get any support from the

state?

Thanks for listening

debbi

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Welcome, Debbi!

Ugh, it sounds like you've had a long hard road getting here. I'm sorry

it's been such a struggle for you all. Will you be able to get permanent

custody of Buster?

Several people on this list homeschool, and there is a seperate list that is

just for people homeschooling children with autism. I believe it is called

aut2Bathome. You are entitled to the same therapies you would receive if he

were attending public school, though usually you must provide the

transportation. You may be told you are not entitled to therapy if you

homeschool but that is not the case, although it sometimes takes a lawyer to

convince the school of this.

You can also look into programs where the teacher comes to your home

(sometimes once a week, sometimes once a month, depending on the program)

and helps you figure out what to work on and works with the child a little.

You can homeschool in addition to that.

Getting into school was a difficult process, but he is now in a good

classroom with a good teacher who understands autism, and he has made a LOT

of progress which I attribute to his time at school. They can provide

things for him there that I cannot provide him at home -- at least, for now.

I do hope to homeschool him eventually.

is 3 & was dx'd just over a year ago. He has autism, pica,

self-injurious behavior, and probably ADHD if we cared to have him tested

for that. Oh yes, and we'll be adding hyperlexia as soon as we see the dr

again, since my little man has started reading and spelling...:)

is 19 months and recently dx'd with a speech delay. He may have a

mild hearing loss; we need another hearing test to find out. I do not

believe he's on the spectrum but he does have some signs of it. A

developmental eval labeled him " at risk " at we are starting the process of

getting him therapy.

I'm Sara, 25, with my own string of dx's. I stay home with the kids. I'm

pregnant and due in late May. My husband Matt, 33, is a great guy -- most

of the time. ;) We have our ups and downs but our marriage is strong and

mostly happy.

I'm sorry you need to be here, but I hope you get the support from this list

that you need. It's a great place.

-Sara.

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Welcome Debbi I am Cecilia and live in Peru, with my beatiful girl

Dessiree and my husband. You are going to like this group it's been a

blessing for me.

Cecilia, from Peru (mom to Dessiree 3y 5m, no dx yet some autistic

traits)

Lovely husband

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>

> I figured that. I just hope I can keep my mouth shut before they figure

> out why they aren't going to like me. :)

>

The schools don't like any of us, debbi, whether we are homeschoolers or

public schoolers. Special needs parents are thorns in their sides.

The only thing is to educate yourself to the teeth, know your rights, and be

prepared to perservere.

Jacquie

PS Welcome!

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> aut2Bathome. You are entitled to the same therapies you would

> receive if he

> were attending public school,

I stand corrected; links diva has informed me there is no such state or

federal law for Arizona.

I thought there was a federal law providing for this in all states.

Debbi, your state autism list may also be a good resource for you, and will

be able to hook you up with an advocate or lawyer (sometimes pro-bono) if

you end up needing one. They'll also be able to give you the right people

to contact for help within the school system.

I was geared up for a tremendous fight but was pleasantly surprised once we

got into the school system. Getting there was the tremendous battle! It

really varies from district to district, even within the same city.

-Sara.

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>> Will you be able to get permanent custody of Buster?<<

Doesn't look like it. We had our round and rounds with CPS about his

mother, but Arizona believes that parents (even bad parents) can do

whatever they want.

>>I'm Sara, 25, with my own string of dx's. I stay home with the kids.

I'm

pregnant and due in late May.<<

Thanks for the welcome.

>>I'm sorry you need to be here, but I hope you get the support from

this list

that you need. It's a great place.<<

I'm not sorry, life is but twists and turns and I don't think I'd trade

Buster in for any other child. (Except I think I'd stop him from

climbing onto the bannister and peeking over the edge of the stairway).

debbi

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Hi Debbi!

Welcome! Buster is very lucky to have you!

Not all of us have had problems with their school districts. I had pretty

much good luck with one of my kids, but horrible with the other. It really

depends on where you are and how easy to diagnose the child is I guess, and

of course, how open they are to working with our kids. It's too bad it has

to be that way though. I wish you luck with the people you deal with.

Sue in MI

Mom to: 12 1/2, HFA

9, AS/ADD

IM smgaska1

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> As to the post I read about having the schools deal with special

services for these children, I was disappointed in that. I don't like

the school system and what in the world makes them qualified to deal

with a medical problem? I have an appointment with them in 4 weeks...

they may not like me... so what.

>

> I wonder about putting kids in a school situation. I don't like it

at all. Does anyone here homeschool? Does it work? Do you get any

support from the state?

>

Welcome Debbi, :D

I'm Tina, mother of 3. 11, autistic, Sami 9, NT-gifted, ,

7 possible Aspergers.

We've had a lot of bad school messages on the list lately but I think

most of the ladies will tell you that not every school is the same.

Because I live in a small county, attends a MH (multiple

handicap) program at one school while attends our local

elementary. The difference between the two programs is night and day!

's is wonderful and she's made SO much progress this year.

s has been a nightmare and I've had to fight for everything and

even threaten lawsuits to get the district to finally train some of

their staff in crises intervention.

I can't tell you how your local district will be. I don't know where

you live and even if I did, I've only had experience with my local

districts.

Don't write your local district off yet. You might have one of the

good ones. I'll keep my fingers crossed and hope that you do!

Tina

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Welcome to this lovely group Debbie : )

we have two little girls: Liesel 4.6 ASD, SID and Hyperacusis she

keeps us on our toes.

And Freyja 3.4 (Typical) but she has a couple of undesirable issues

whether they be copied or self manufactured I don't know yet!

Louisa

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Hi Debbi ! And welcome. I'm Ali, married to Iain and we've 2 kids.

Lyndsey is 7(NT), and Andy is 5(PDD-NOS). We live in Glasgow,

Scotland.

This is a brilliant group and i hope you will love it here as much as

i do.

Ali

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  • 3 years later...

Hello,

My wife and I are new to your group, we just recently found out

about this syndrome and would like to know more information,our child is

three years old and has most of the symptoms related to CHARGE however there

are some things that she does that we are not sure of. She seems " out of

control " as far as talking back, hitting other siblings and adults, etc. Is

this part of this syndrome? has anybody else experienced these same traits

in their children?.

Sincerely,

Tim & Fellows

Preston, Idaho

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Hello,

I am also fairly new to the CHARGE world, our daughter is 9 months

old and so I dont know about the behavior part of it since she

doesnt really do to much yet as far and fits and hitting. I know

there is alot of great people here and they will help you with

whatever you need to know.

Welcome to the group!!

Crystal and Eva (9 month charger)

>

> Hello,

> My wife and I are new to your group, we just recently

found out

> about this syndrome and would like to know more information,our

child is

> three years old and has most of the symptoms related to CHARGE

however there

> are some things that she does that we are not sure of. She seems "

out of

> control " as far as talking back, hitting other siblings and

adults, etc. Is

> this part of this syndrome? has anybody else experienced these

same traits

> in their children?.

>

>

> Sincerely,

>

> Tim & Fellows

> Preston, Idaho

>

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Hello,

Welcome to the list. Would you mind telling us more about her CHARGE like

features?

Does she have spoken or signed language, so the being " out of control " seems

different than one would expect given her understanding of social norms,

language, that mom or dad are pleased or not pleased when she does ______?

There has been a lot of research into behavior in CHARGE recently, it seems

pretty clear that behavior is another CHARGE feature, but like with

everything else there are extremes; some kids have a few quirks and some

kids have lots of problems.

When we say CHARGE behavior it can refer to a lot of things, such as

a tendency to get stuck on a thought or action, to be impulsive, to have a

fluctuation in being wild (seemingly beyond their ability to stop it) and

very low activity, a need to wave a hand in front of the eye or other

self-stim actions, and some are even diagnosed or have symptoms of pervasive

developmental disorder (autism spectrum), trouble sleeping and so on.

Many parents report that when their child is " out of control " ,if the adult

tells them no, the child just laughs more. This makes most people mad,

because it appears the child is doing it on purpose.

Instead (at least initially) we think that children with CHARGE have

difficulty regulating their emotional state, so when they get wild, any

further " big " input just adds more to an overwhelmed system and they just

get more wild. For us when this happens, I did not think it was from

frustration at lack of formal language or anything like that. It is like he

woke some days and I could just tell his body was on overdrive and he could

not calm it down. For us, we have a safe, quiet place where he goes to get

his " wilds " out. He can kick, and laugh, and bounce on the mattress, but he

cannot hurt his siblings, the dog, the house, or himself. If I go to get

him too soon, he pushes me away. When he is ready, he lets me bring him

out. This is not time out or punishment, but is respecting his need to

regulate his nervous system in a way that works for him. I find it far more

effective than being angry with him, because he hit his sister in an attempt

to play. I of course try to redirect it first, but if he is one of those

states, then off he goes.

Another thing that seems to be common, is needing a longer time to process

information. This shows up behaviorally as trouble with transitions or

changes in routine, often leading to " melt downs " .

There is a lot of information on this topic available, although overall we

are simply trying to learn more. Brown is wonderful at understanding

and explaining some of these differences. If you ever hear he is coming to

your area, go and see him.

A special edition of the American Journal of Medical Genetics was devoted to

CHARGE, March of 2005. The majority of the articles focused on behavior.

These can be accessed by going to the website of the CHARGE Syndrome website

listed at the bottom of each post on this list.

Kim Lauger

Mom to Dylan 9 (CHaRGE), Kayla 15, Tyler 17, wife to Roy

Tucson, AZ

> Hello,

> My wife and I are new to your group, we just recently found out

> about this syndrome and would like to know more information,our child is

> three years old and has most of the symptoms related to CHARGE however there

> are some things that she does that we are not sure of. She seems " out of

> control " as far as talking back, hitting other siblings and adults, etc. Is

> this part of this syndrome? has anybody else experienced these same traits

> in their children?.

>

>

> Sincerely,

>

> Tim & Fellows

> Preston, Idaho

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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kim is david brown on the list or is that a question for lisa just wondering

anyway welcom to the group its great in here and kim is right bout all the

issues and we really need to understand more about the specific out of

control behaviors to help you hugs ellen in aus

>

> Hello,

>

> Welcome to the list. Would you mind telling us more about her CHARGE like

> features?

>

> Does she have spoken or signed language, so the being " out of control "

> seems

> different than one would expect given her understanding of social norms,

> language, that mom or dad are pleased or not pleased when she does ______?

>

> There has been a lot of research into behavior in CHARGE recently, it

> seems

> pretty clear that behavior is another CHARGE feature, but like with

> everything else there are extremes; some kids have a few quirks and some

> kids have lots of problems.

>

> When we say CHARGE behavior it can refer to a lot of things, such as

> a tendency to get stuck on a thought or action, to be impulsive, to have a

> fluctuation in being wild (seemingly beyond their ability to stop it) and

> very low activity, a need to wave a hand in front of the eye or other

> self-stim actions, and some are even diagnosed or have symptoms of

> pervasive

> developmental disorder (autism spectrum), trouble sleeping and so on.

>

> Many parents report that when their child is " out of control " ,if the adult

> tells them no, the child just laughs more. This makes most people mad,

> because it appears the child is doing it on purpose.

>

> Instead (at least initially) we think that children with CHARGE have

> difficulty regulating their emotional state, so when they get wild, any

> further " big " input just adds more to an overwhelmed system and they just

> get more wild. For us when this happens, I did not think it was from

> frustration at lack of formal language or anything like that. It is like

> he

> woke some days and I could just tell his body was on overdrive and he

> could

> not calm it down. For us, we have a safe, quiet place where he goes to

> get

> his " wilds " out. He can kick, and laugh, and bounce on the mattress, but

> he

> cannot hurt his siblings, the dog, the house, or himself. If I go to get

> him too soon, he pushes me away. When he is ready, he lets me bring him

> out. This is not time out or punishment, but is respecting his need to

> regulate his nervous system in a way that works for him. I find it far

> more

> effective than being angry with him, because he hit his sister in an

> attempt

> to play. I of course try to redirect it first, but if he is one of those

> states, then off he goes.

>

> Another thing that seems to be common, is needing a longer time to process

> information. This shows up behaviorally as trouble with transitions or

> changes in routine, often leading to " melt downs " .

>

> There is a lot of information on this topic available, although overall we

> are simply trying to learn more. Brown is wonderful at

> understanding

> and explaining some of these differences. If you ever hear he is coming

> to

> your area, go and see him.

>

> A special edition of the American Journal of Medical Genetics was devoted

> to

> CHARGE, March of 2005. The majority of the articles focused on behavior.

> These can be accessed by going to the website of the CHARGE Syndrome

> website

> listed at the bottom of each post on this list.

>

> Kim Lauger

> Mom to Dylan 9 (CHaRGE), Kayla 15, Tyler 17, wife to Roy

> Tucson, AZ

>

>

>

> > Hello,

> > My wife and I are new to your group, we just recently found out

> > about this syndrome and would like to know more information,our child is

> > three years old and has most of the symptoms related to CHARGE however

> there

> > are some things that she does that we are not sure of. She seems " out

> of

> > control " as far as talking back, hitting other siblings and adults, etc.

> Is

> > this part of this syndrome? has anybody else experienced these same

> traits

> > in their children?.

> >

> >

> > Sincerely,

> >

> > Tim & Fellows

> > Preston, Idaho

> >

> >

> >

> >

> > Membership of this email support groups does not constitute membership

> in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome

> Canada

> > information and membership, please visit http://www.chargesyndrome.ca or

> email

> > info@... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

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