Meredith

[Guest guest]

<< She walks extremely well but for behavioral reasons, walking into a store

or

mall is totally out of the question now............. " there are a few

autistic traits but really what we're

seeing is consistent with moderate/severe retardation. " >>

Hi, Everyone.....Meredith....a lot of what you wrote sounds like so many of

our kids. Strollers and wheelchairs can be 'sanctuaries' for many of our

kids with anxiety issues. Like noted in precious replies, behaviors can be

from

communication problems. An example could be something as simple as " Hey,

Mom, wait, I saw something back there and want to show you " . She can't tell

you that like a normal 5 y/o girl would in the mall because she doesn't have

the speech and she doesn't have the wiring in her brain to process all of that

and relay it to you. I hope you do get the big " A " dx because it will

bring more services her way......especially speech, OT, behavioral therapy,

etc........much more so than any normal T21 kid needs. As for being

mod-severely

retarded........doesn't sound like it to me not if she is learning shapes and

has the TRS (tape rewind syndrome). If you have a video recorder, why don't

you video some of her actions at home and out of the stressful world of

doctor offices, etc, and take it with you?

Another thing........my son, Gareth, use to rub a piece of fur (called

Puff) over his arms and feet, too. It use to calm him down. It could ONLY be

r

eal fur, though!!! I bought fake fur at the fabric store a couple of times

when we lost Puff and he wouldn't touch them. I use to go to the Salvation

Army

store and buy old coats to take the fur collars off of them. To this day

(age 19) he still has one remaining Puff at his bed.

Take care, Everyone.

Margaret

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

Meredith--

You are describing so many of the same behaviors my son has. And

we didn't receive a diagnosis of autism until he was 12, just this

last fall. Not for lack of trying to figure things out, but our

Pediatrician told us he didn't have autism at age 5, the

developmental ped we saw through DS clinic noted all his strange

behaviors, but never mentioned autism. The psychologist we saw when

he was 11 attributed his behaviors to " mental retardation " and it

wasn't until spring of his 11th year we finally found some support

by putting DJ into a research study with the M.I.N.D. Institute here

in CA. The psychologist there told us DJ had all the signs of

autism, but because he was in a research study, he couldnt' be

diagnosed, so could we please come back for a clinic visit. Because

of all the politics of insurance and hospital groups, we were denied

entrance to clinic. FINALLY, at age 12 we found that a new ped.

neurologist was in town, and he took Medicaid. That is where we

finally got the autism diagnosis.

Basically there are three " traits " to autism: 1.)Communication

deficits, 2.)Social deficits, and 3.)Abnormal patterns of motoric

behaviors and repetitive routines. It is just how significantly

impacting these three areas are that determines where on

the " spectrum " a child is. It sounds to me that Victoris is

exhibiting all three.

Because does not use speech purposefully she would have the

communication deficit. My son, like , can name lots of

things, he can make noises like many animals. But he cannot ask for

what he wants and uses his repetitive behaviors to get my attention

and then somehow get me near what he wants, sometimes hoping I will

understand, other times he will take my hand and put it on what he

wants.

The social deficits question: , by your account, does not

have social relationships commensurate with her chronological age,

nor even possibly her cognitive age. Children with autism do avoid

eye contact, but it is a myth that they never have eye contact. My

son fooled the first psych we saw, he said, " I see he looks you in

the eye. " Yes, he does, sometimes, but only because we have worked

long and hard (11 years) with him, but even then it is fleeting and

doesn't always happen. He also has build a trust with me. DJ, too,

acts like no one is there, when in fact others are there. Or he has

learned that a nice, loud, " Hi!!!!! " with a wave in a new person's

general direction will get him " off the hook " and he can go back to

the quiet of his room or back to play repetitively with a toy.

sounds like she is dealing with some a lot of sensory

issues: the dangling, the dislike of certain sounds, the spinning.

These are the abnormal patterns of motoric behaviors and repetitive

routines.An OT with training in Sensory Integration Dysfunction

should be able to help you in this dept. When my son would hear

another child squeal in delight, or cry, or a bell would ring, or

another sudden noise, he would projectile vomit. That was a pretty

strong sensory reaction, but often it was misdiagnosed as purely

gastrointestinal, and not a reaction to sound. He has, with support

and therapy, gotten much better, and now responds to loud noises in

a less colorful manner: hand flapping, shouting back, etc.

So many on this list have received such help a KKI. But even if you

do not receive the answer you expect, you will still be able to go

on and make a decision whether to pursue it further or not. You are

blessed that you will be evaluated by some of the best this country

has to offer at such a pivitol point in 's life. But it

certainly fits the criteria for autism to me.

One of the biggest helps we have had in the past few years is the

help of a Board Certified Behavior Analyst and some good teaching on

behavior modification. If you haven't had this, this is really a

helpful support. In my son's new classroom there is a Behaviorist

there or available 3 days a week. We talk to her often.

Well, I've rambled on enough, but I know when I first found this

list I was where you were now, no diagnosis, just suspicions. I

wanted to know the road ahead, to be at peace. But I'm sure I would

have not slept very well had I known how long and how many people it

would take for us to arrive at our diagnosis. We're here for you,

Meredith, and Dave. And is one lucky (and so cute by the

pictures!) girl to have you as parents.

Hugs,

Donnell (mom to DJ, age 12, DS/ASD)

[Guest guest]

Hi there! Thanks for sharing!

In my " spare time " I am the Ukraine Family Coordinator for Reece's Rainbow, so

I've been working with Charrissa during her process . And... We just

announced (about 30 min ago) that we will be adopting one more from Ukraine...

this little guy has CP and is 5 years old.

You can visit our blog at www.cornishadoptionjourney.blogspot.com

Blessings!

Meredith

>

> a friend's adoptiong blog. and Ivanna are from Ukraine too.

> http://anextraleaf.blogspot.com/

>

>

>

[Guest guest]

Yes, Monroe found me We spent a week praying for a family for him and God

pretty much said " quit looking and ACT! "

Also, to answer your other question, Reece's Rainbow is MOSTLY volunteer based,

but the director is paid. As of ? August 1? (not exactly sure) I will have a

(very) small salary and one other staff will as well. The Ukraine coordinating

position is about 30+ hours/week and has been all volunteer up to this time.

All of the Ukraine dossier prep teams are volunteer and there's no intention for

salaries outside of the " 3 core directors " of RR at this time.

If you have other questions about RR feel free to write me off list mkp1982 at

hotmail dot com. I'm on digest for this group so I can't see your full email to

write you

Blessings,

Meredith

>

> MONROE FOUND YOU! NOW THAT REALLY IS A SMALL WORLD. i WAS PRAYING FOR HIM.

>

> RENEE

>

> PS sorry for my excitement.

>