Re: Seth

[Guest guest]

Welcome Seth;

My son () inherited CMT from me; he likes to

play soccer and run, soon he will have to give it up

but for now I encourage him to enjoy and do what he

can without hurting himself. He doesn't have AFO's yet

but he does have molded inserts for his ankles to

stabilize; it helps him run safer and faster.He has

" flat feet " not high arched. He is ten, and likes to

draw,read science fiction and some fantasy, and

engineer his own " transformers " . . from building

blocks; I think he will be an architect or engineer .

.. designing buildings or tools. He learned to juggle

in P.E. and is going to try out for the juggling team.

My youngest daughter (Charli Sierra) also has it; she

is eight; she has high arches and walks on toes; her

ankles are getting weak now and soon will have to have

orthotics; either braces or inserts or both; she is

just now able to ride her bike without falling due to

balance. Her brother taught her and helps her do allot

of things she is afraid to try; He has helped her

learn to roller blade and play baseball;

They both get fatigued and need to nap often

too;otherwise they get very cranky with each other!

LOL They also have to take breaks often from homework

and school work due to hands cramping and thumbs

giving way.

If you like you may email them privately to my address

and put in subject line their names. Also email and I

will give you our mailing address if you'd like to

write or send pics etc.

Good Luck and I hope this list will help! Sharing

with others who understand, usually does help most of

us! ~~~~~~~Libby

=====

" I THANK GOD FOR MY HANDICAPS, FOR, THROUGH THEM, I HAVE FOUND MYSELF, MY WORK,

AND MY GOD. " - Helen Keller

" A friend is someone who knows the song in your heart and can sing it back to

you when you have forgotten the words. "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Living w/CMT http://www.geocities.com/charcot_marie_tooth

" Nobody can make you feel inferior without your permission. " -Eleanor Roosevelt-

__________________________________________________

[Guest guest]

First, Welcome.

Second, most insurance companies have " special guidelines " for Aspergers, as

it falls under " mental health " AND it also falls under a general health

category. For Blue Cross, for example, when I tell them " Aspergers " they

transfer me to a " specialist " . Rules about referrals, etc. are much different.

I say that because you might be able to get services that are " outside your

plan " or service providers who are outside your plan. You may have to drive a

ways, to a regional facility for example, but for a once a month or twice a

month trip, it might be worthwhile. The cost to travel back and forth would be

either tax deductible or you could use pre-tax dollars for it if you participate

in the program. I've said to a number of my friends, " the only thing worse than

no psychologist is a bad one. " Asperger's is tricky, it's a totally different

mind set. You need someone really knowlegeable to be able to think and talk

like your aspie in order for him to understand and

try to conform his behavior. I need that resource to help me understand when

to " push " and when to " protect " . (For me a hard balance....helping him push the

limits of his " comfort zone " , but also help him prevent the melt-downs and

self-esteem issues.)

What state do you live in? I might be able to help you find some resources.

Does your state have an autism society? They tend to be a good resource,

especially for a beginner.

Third, to be terribly useful in the school system, I believe you need to get

that diagnosis. It wasn't until 4th grade that we got that for my DS, and that

was 5 years of school where I heard about his behaviors and understood his

issues, but could get no help because he was " so smart " . An AS diagnosis

typically involves an entirely different criteria, more based on the

social/emotional/organizational/speech. After the diagnosis, we got 2 hours per

week of OT, 1 hour per week of speech, and 5 20 minute blocks of " assistance "

time by special ed/school psychologist, plus LOTS of accomodations that didn't

exist just a week before the diagnosis, even though nothing with DS directly

changed. I'd personally strongly recommend a regional center or a psychologist

who works with Aspergers AND ped's for getting a diagnosis and hopefully

continuing care. They are going to know what to look for and won't be coming in

with blinders about " oh how smart they are " and thus the

issues must be your parenting style vs. Aspergers (or other AS diagnosis.)

Amber <tootsanderson@...> wrote:

Hey, I just wanted to say hello and introduce myself. I have a father

and a father-in-law with Asperger's and even without a solid diagnosis

I can tell that my five-year-son Seth has Asperger's as well. I live

in a small rural community that has exactly one child psychologist who

knows less about AS than I do. I don't know why he can't just pick up

a few books like I did. Anyway, Seth will be starting school in the

fall and I have some serious concerns about his inability to cope with

seven or eight hours of school. Any suggestions?

Amber

---------------------------------

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[Guest guest]

Amber,

I used to teach preschool and kindergarten in the days before anybody

knew anything about Asperger's. I had a few kids who, in retrospect,

must have had AS. I had my aide take them outside a couple of times a

day to twirl to their hearts' content and run off steam. One of them

used the time to go outside and play with worms. He built " compounds "

for them. LOL You could use your son's IEP to build in some break time.

By the way, my son's psychologist knew nothing about AS when we first

started seeing her. Now she is very knowledgeable. My son's former

psychiatrist sends lots of his AS patients to her now. Because guess

what? She knows how to *read*! <grin>

Welcome to the group, Liz

On Jun 21, 2006, at 9:36 PM, Amber wrote:

> Hey, I just wanted to say hello and introduce myself. I have a father

> and a father-in-law with Asperger's and even without a solid diagnosis

> I can tell that my five-year-son Seth has Asperger's as well. I live

> in a small rural community that has exactly one child psychologist who

> knows less about AS than I do. I don't know why he can't just pick up

> a few books like I did. Anyway, Seth will be starting school in the

> fall and I have some serious concerns about his inability to cope with

> seven or eight hours of school. Any suggestions?

>

> Amber

[Guest guest]

-Hello Amber,

In Mi. if we feel our child isn't quite ready for kinder. we can put

them into early/fives. It's usually when they're maybe alittle

behind in something, or emtionally not quite there yet.

God Bless

Connie T.

-- In , Liz Bohn <lbohn@...> wrote:

>

> Amber,

> I used to teach preschool and kindergarten in the days before

anybody

> knew anything about Asperger's. I had a few kids who, in

retrospect,

> must have had AS. I had my aide take them outside a couple of

times a

> day to twirl to their hearts' content and run off steam. One of

them

> used the time to go outside and play with worms. He

built " compounds "

> for them. LOL You could use your son's IEP to build in some break

time.

>

> By the way, my son's psychologist knew nothing about AS when we

first

> started seeing her. Now she is very knowledgeable. My son's

former

> psychiatrist sends lots of his AS patients to her now. Because

guess

> what? She knows how to *read*! <grin>

>

> Welcome to the group, Liz

>

> On Jun 21, 2006, at 9:36 PM, Amber wrote:

>

> > Hey, I just wanted to say hello and introduce myself. I have a

father

> > and a father-in-law with Asperger's and even without a solid

diagnosis

> > I can tell that my five-year-son Seth has Asperger's as well. I

live

> > in a small rural community that has exactly one child

psychologist who

> > knows less about AS than I do. I don't know why he can't just

pick up

> > a few books like I did. Anyway, Seth will be starting school in

the

> > fall and I have some serious concerns about his inability to

cope with

> > seven or eight hours of school. Any suggestions?

> >

> > Amber

>

[Guest guest]

Welcom to the group Amber! My son Trevor hasn't as of yet been

officially diagnosed but the school said he showed several signs of

it after conducting learning disability test for him this year.

After all the reading I have done I am convinced he does have AS.

Trevor was diagnosed with type 1 diabetes at the age of 16mts. He

was very stubern about potty training and wasn't fully until right

after he turned five. So he never went to preschool. I knew he

wasn't where he should be for kindergarten but he couldn't stay home

anymore and just watch cartoons (his obsession). It was the best

thing I have done for him. We now have an IEP for him for first

grade and the school district is aware of all he needs help with.

Hope this helps some.

Darcy

>

> Hey, I just wanted to say hello and introduce myself. I have a

father

> and a father-in-law with Asperger's and even without a solid

diagnosis

> I can tell that my five-year-son Seth has Asperger's as well. I

live

> in a small rural community that has exactly one child psychologist

who

> knows less about AS than I do. I don't know why he can't just

pick up

> a few books like I did. Anyway, Seth will be starting school in

the

> fall and I have some serious concerns about his inability to cope

with

> seven or eight hours of school. Any suggestions?

>

> Amber

>

[Guest guest]

I am having the same issues with my son. He will start school in Jan next year

and we have already started preparing him. Any time I have to go up to the

school even if it is to drop off some papers I take him along so that he gets

used to the environment. I take him up there sometimes when the kids are all in

class so that he can play on the playground. Over the next few months we will

be visiting the classroom that he will be in next year and having his new

teacher visit him outside school. I think it's about familiarizing him with the

school and the people in it.

We also took home some readers and things so that he could look at them. I am

even going to start getting him to practice wearing his uniform at the end of

the year and we'll do practice runs at getting ready for school and even at

having a lunch box. My son has real trouble with some lunch wraps.

Beck

( ) Seth

Hey, I just wanted to say hello and introduce myself. I have a father

and a father-in-law with Asperger's and even without a solid diagnosis

I can tell that my five-year-son Seth has Asperger's as well. I live

in a small rural community that has exactly one child psychologist who

knows less about AS than I do. I don't know why he can't just pick up

a few books like I did. Anyway, Seth will be starting school in the

fall and I have some serious concerns about his inability to cope with

seven or eight hours of school. Any suggestions?

Amber

[Guest guest]

Hi Amber. I'm new, too. We have a mobile therapist (psychologist) who

comes to the house once a week through a state program (NJ Child

Behavioral Health Services), and he had no experience with Asperger's.

I showed him some of the info I found in the books I bought, and he

realized that my son (CJ) actually does meet the criteria. I wound up

buying him the Tony Attwood book and he stopped by Saturday to borrow

" Asperger Syndrome and Difficult Moments " . I thought they were good

ones to start with. I'm very happy that he's reading up on it, because

I think it will only help him better understand it. He may decide to

tweek his therapy (especially trying to teach social skills), and it may

help him point others towards proper diagnoses in the future.

As for starting school, I didn't know about Asperger's when CJ started

school. I had definite concerns about his behavior, but he wound up

being ok in that regard. Give him a chance and he may surprise you.

:-) As for your son's psychologist, I would try to find someone else

with experience, even if you have to travel. Someone else here had a

good idea about finding a regional center. That may be your best bet.

Debbie (in NJ)

Amber wrote:

> I live in a small rural community that has exactly one child

> psychologist who

> knows less about AS than I do. I don't know why he can't just pick up

> a few books like I did. Anyway, Seth will be starting school in the

> fall and I have some serious concerns about his inability to cope with

> seven or eight hours of school. Any suggestions?

>

>

>

>

[Guest guest]

>

> I am having the same issues with my son. He will start school in

Jan next year and we have already started preparing him. Any time I

have to go up to the school even if it is to drop off some papers I

take him along so that he gets used to the environment. I take him

up there sometimes when the kids are all in class so that he can play

on the playground. Over the next few months we will be visiting the

classroom that he will be in next year and having his new teacher

visit him outside school. I think it's about familiarizing him with

the school and the people in it.

> We also took home some readers and things so that he could look at

them. I am even going to start getting him to practice wearing his

uniform at the end of the year and we'll do practice runs at getting

ready for school and even at having a lunch box. My son has real

trouble with some lunch wraps.

> Beck

> ( ) Seth

>

>

> Hey, I just wanted to say hello and introduce myself. I have a

father

> and a father-in-law with Asperger's and even without a solid

diagnosis

> I can tell that my five-year-son Seth has Asperger's as well. I

live

> in a small rural community that has exactly one child

psychologist who

> knows less about AS than I do. I don't know why he can't just

pick up

> a few books like I did. Anyway, Seth will be starting school in

the

> fall and I have some serious concerns about his inability to cope

with

> seven or eight hours of school. Any suggestions?

>

> Amber

>

>

>

>

> Beck, are you English? We were about to move to England (infact we

would have left last week) and I noticed that they set the school up

so that the children the semester that they turned five instead of

the way it's usually doen in America.

Amber

>

[Guest guest]

>

> > I live in a small rural community that has exactly one child

> > psychologist who

> > knows less about AS than I do. I don't know why he can't just

pick up

> > a few books like I did. Anyway, Seth will be starting school in

the

> > fall and I have some serious concerns about his inability to cope

with

> > seven or eight hours of school. Any suggestions?

> >

> >

> >

>Thanks Debby. I think sometimes about traveling but it's really up

to the military and where they want to give us a referal. But we are

moving to Albuquerque in December so I imagine there will be no

shortage of possible replacements there.

Amber

>

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