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Hi Everyone,

Yesterday we had our marathon appointment to get an autism diagnosis for

Brook. We were at the clinic for 3 1/2 hours. Brook did remarkably well or we

wouldn't have been able to last that long. The doctor did confirm that he has

autism. It wasn't nearly as difficult as I anticipated. I guess I waited so

long that I have already worked out my feelings on the subject.

In Brook's case the Dr. believes that the autism was caused by his

seizures, myoclonic, that began when he was around one yr. old. We decided to

try him on paxil to see if it would help his water obsession. We just started

last night, at 5 mg and will work up to 10 mg. We will see the Dr. again

next month for a follow up.

Marisa

Mom to Miles 14, Brook 11 and Genevieve 4

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Hi Joan,

I live in Orinda, in the San Francisco Bay Area. We saw Dr. a

Buhrmann at the Child Development Center at Children's Hospital Oakland. When

I went to pick up Brook's prescription last night the pharmacy also had her

listed for UCSF, University of California San Francisco. I don't know if she

works out of UCSF also.

Marisa

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Thanks Marisa!!

I'm really glad she was helpful to you.

Joan

At 01:30 AM 12/5/01 EST, you wrote:

>Hi Joan,

> I live in Orinda, in the San Francisco Bay Area. We saw Dr. a

>Buhrmann at the Child Development Center at Children's Hospital Oakland.

When

>I went to pick up Brook's prescription last night the pharmacy also had her

>listed for UCSF, University of California San Francisco. I don't know if she

>works out of UCSF also.

>Marisa

>

>

>--------------------------------------------------

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  • 1 month later...

In a message dated 2/2/02 12:12:09 PM Pacific Standard Time,

writes:

> The school assured me that that would not be a deterrent for to get any

>

> outside services that he may need from the school. Although this part of

> it

> is comforting, I am still adamant about him having one on one, but this is

> NOT gonna happen.....no one in the whole school dist. has one on one aides,

>

> they just do not provide it!

>

> All of a sudden, everyone was praising 's accomplishments at having

> mastered potty training! Big deal! Although it is a major milestone, it

> is

> NOT an academic progression, and still cannot count nor does he know

> one

> color from the other! He is on approximately a 30 month level with

> scattered

> skills up to about 48 mos. (4yrs.). This is an almost 9 yr. old boy we're

> talking about.

>

> What do you all think I should do? Forget about it or get a fourth opinion

>

> from someone removed from the school dist.? Will it matter? Apparently,

> the

> doctor's reports mean nothing as autism is not a condition you can test

> with

> blood or lab work and is a " judgement call " .

>

> The only good thing will be that 's apparent lack of progress will once

>

> again qualify him for summer school but I would gladly trade that in a

> heartbeat just to see him blossom!

>

> Thanks for the read,

> Take care all,

>

>

,

My doesn't have any label other than ds at school. Our school district

also doesn't do " child specific aides " . This is fine with me since if they

hire someone I'm stuck with them even if they aren't good for my child (union

issues). Technically a child shouldn't have to have a specific label to get

the services that they need. has on his IEP that he needs one on one

supervision through his whole day. He can only work with up to three

different adults during his day. The majority of his day needs ot be with one

or two individuals.

gets one aide for most of his academics. The sp. ed. teacher works with

him also and the only other people that are with him are the adaptive PE

teacher and the speech therapist. He is never without a person directly

supervising him.

Karyn

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  • 2 months later...
Guest guest

Hi Pam,

Happy to hear that your testing is done with the twins. School is about the

same with Zeb. How is school for your girls with that teacher? I know you are

on the right track. How did you do with calling the special ed director? Is

the advocate helping ?

Charlyne

Mom to Zeb 9 DS/OCD ?

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Guest guest

Pam, I am so glad you found out about , what a great mom you are to stay

on top of this!! I know it will help to have this diagnosis. Hope they were nice

to you at Vandy, bet you are so tired after a day like this!! I was after one

child going through it!! I know you will get great response from this group

about ideas. With we are putting his life to pictures, photographs work

best for this guy. I show him what we are going to do next and put sometimes one

to three at a time to let him know what is getting ready to happen. I have them

with velcro so I can put them on a small black board.(very homemade and

inexpensive) We have pictures of therapists and familiar people foods car,

grocery cart (ugggg) and more. My husband kinda thinks I have gone overboard but

I see looking (sometimes just for a minute) and sometimes saying their

names, and know I have to do this all the way!!

Anyway sorry to go on and on, but this group helped me realize with s

therapists that pictures work! Also we do the OT brushing and he is on the diet

(no wheat or milk) cause for us this seems to calm his sensory stuff down. I

know this isnt for everyone but it is something I tried before and am trying

again.

Thanks for asking about him, will get results soon for sleep study soon, he has

a CT scan for his neck Tues. and orthepedic Dr. appointment May 13, So glad you

have your eval. over, and you have always been a part of this group, we want to

keep hearing about those sweet girls, Bye Bye, Dawn, s mom

Autism Diagnosis

Hi Everyone,

I took the twins to get their pshcological evaluation in Nashville at Vanderbilt

yesterday. The Dr. diagnosed with ASD. So it is official now. I guess I

truly belong to this group now. The Dr. said Hannah is a typical DS child.

Hyperness and all!

I guess now I am loaded with questions. Our IEP meeting is coming up next week

and I want to know what kind of goals to set for . So if you have time can

you tell me some of the different teaching methods etc. you have used that seems

to work best or has worked best with your kids.

basically cannot do anything. Nothing! All she likes to do is sit and

watch TV or listen to music. So any ideas for me for my meeting would be great!

I'm sorry I don't post respond too much to everyones post. I have a hard time

keeping up with all the different ones. I also need to keep me a little notebook

here by my PC so I can write everyones names down and who belongs to who so I

can keep everyone straight.

Charlene how is it going at school?

Dawn did you find out anything new about ?

Take care and thank you so much. I love you guys!!

Pam mom to identical twins Hannah (DS) and (DS-ASD) age 6

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

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Guest guest

In a message dated 4/23/02 7:16:45 PM Eastern Daylight Time,

p_houser37@... writes:

> So if you have time can you tell me some of the different teaching methods

> etc. you have used that seems to work best or has worked best with your

> kids.

Well, Floortime worked for years for us. You KNEW I was going to say that

didn't you.....LOLOL Seriously, that and now the ABA. We use PECS too,

although I'm not satisfied with Maddie's progress so may have to back-pedal a

little. Sensory Integration has helped wonderfully for us as well.

Feel free to ask anything you want Pam. Teh thing to remember is that it's

never one size fits all.

{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}} I know that you can feel validation

from getting a dx, but I also know how it rips at your heart!!!

Donna

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Guest guest

just wanted to say for this post, that y'all are doing

a great job

=====

It's National Autism Awareness Month.

__________________________________________________

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Guest guest

Thanks - You are too!!!!

Kathy

Re: Autism Diagnosis

just wanted to say for this post, that y'all are doing

a great job

=====

It's National Autism Awareness Month.

__________________________________________________

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Guest guest

i have to agree for anthan sensory integretion has hleped trememdously in his

school routine, he actually will sit and do his work, plus the all his SI

activities are also educational too this helps. natha has been using PECs and

aumentive communication since 3yrs old, and dont forget the pic schedules those

are a MUST! nathan cant function with out those especially at school. Another

thing for nathan since he is 10 and still cant write, eventhough weve been

working on it wince 3yrs old at school and home, for the last few years or so

weve had most of his curriculum on the computer he is great onthe keyboard--its

pecking style but he gets it done pretty fast, and it aids his learning not

holking him back because he cant write, for worksheets he uses rubbber stamps.

He learned to type with Intellikeys, and still uses many of their programs too,

them and picture it, and sentence stuff etc. sorry soo long, ill let others add

ideas. shawna.

Re: Autism Diagnosis

In a message dated 4/23/02 7:16:45 PM Eastern Daylight Time,

p_houser37@... writes:

> So if you have time can you tell me some of the different teaching methods

> etc. you have used that seems to work best or has worked best with your

> kids.

Well, Floortime worked for years for us. You KNEW I was going to say that

didn't you.....LOLOL Seriously, that and now the ABA. We use PECS too,

although I'm not satisfied with Maddie's progress so may have to back-pedal a

little. Sensory Integration has helped wonderfully for us as well.

Feel free to ask anything you want Pam. Teh thing to remember is that it's

never one size fits all.

{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}} I know that you can feel validation

from getting a dx, but I also know how it rips at your heart!!!

Donna

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  • 6 years later...

My 21 year old daughter has a number of congenital health related

issues, as well as sensory integration disorder and learning

disabilities. We live in the western suburbs (Wheaton.) We are

looking for a recommendation in the area for a doctor who diagnoses and

treats autism spectrum disorders.

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In Naperville there is Little Friends Center for Autism. They have a website

for additional information but they evaluate the individual and provide

information to assist the individual and family. it is possibly worth checking

into.

autism diagnosis

My 21 year old daughter has a number of congenital health related

issues, as well as sensory integration disorder and learning

disabilities. We live in the western suburbs (Wheaton.) We are

looking for a recommendation in the area for a doctor who diagnoses and

treats autism spectrum disorders.

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