Services, diagnoses, ASD etc. and School

[Guest guest]

I think you are right about services and it's not just the school systems. In

Florida, you

have to have an autism diagnosis--not ASD or PDD or Asperger's--to get a

Medicaid

waiver. Since we don't have crystals balls and can't totally predict the future

course of our

children's development--that could be important. It would mean lifelong free

medical

insurance and case management even as an adult, even if we weren't around to

help any

more. (Although the official waiting list is 850 years, so lots of people do not

apply.) ASD

is not even an official diagnosis. It's a spectrum of problems.

We took my DGS to a top psychiatrist at a major regional medical center here for

an

evaluation, and she said, Autism (high functioning). The problem with not

having a

specific diagnosis like this if that is what it is is this: because of their

social difficulties

(and DGS has GREAT eye-contact and is affectionate with his family) and speech

delay,

they are likely to get into trouble in school. Our local school district has a

" zero tolerance "

policy for what they call " youth violence, " so if DGS gets real excited and hits

another

child--even if he is trying, in his immature way, to initiate a social

interaction by touching

somebody's shoulder or is just so excited that he cannot talk at that moment--he

could

be expelled. It's what you might call the " Budd " syndrome if anybody else

remembers

that tragic classic movie. Ironically, they also allow corporal punishment at

the

schools....don't get me started. DGS copies everything he sees and does not

understand

status or roles yet. Corporal punishment would be a wonderful way to teach him

that

hitting is OK--even the principal does it!

Having a proper diagnosis is an important protection legally for your child in

case of

" discipline " problems in school. It does not necessarily mean that the child

will be in a

special education classroom, or anything like that.

On the other hand, his dad was over here playing Insaniquarium (a great computer

game

BTW), and he couldn't wait to call up his mommy and described verbally, over the

phone,

all the new computer pets his daddy got and about his new bubbleator and all the

details

of the game. It is astounding to listen to his speech now when he has a visual

way of

learning something. Yesterday he finished his time here by telling his daddy,

" You can

have re-venture (adventure) Mode and I will have the Virtual Tank. " LOL!

He even told his mommy that when the octopus enemy alien turns blue, you have to

stop

clicking it and then start again when it turns red. I've never heard such a

river of speech

out of this kid as that game brings out. But he is DEFINITELY a visual learner,

not an

auditory one. He used to be totally unable to talk on the phone. Now he wants

to, because

he needs to look at the screen while he is describing everything to his mommy.

And he

does have social problems. Even though he had been mainstreamed for two years

in Head

Start, we had a disastrous first day when we tried to put him in VPK this

summer, and the

teacher said he already knew the whole curriculum.

Now when he was evaluated for EI at 2.5 years, they said, No, he doesn't have

autism--he

has severe receptive and expressive speech delay and severe sensory integration

problems

and we have some concerns about his social delay and fine motor

coordination...so he

qualified for twice a week free ST and OT. Until he was three, then he got some

ST in

school and OT for a while. If he had had a proper diagnosis, I think that some

other

expensive services they didn't want to provide would have been provided.

So think about this--and say a prayer for DGS. He is starting K in a new school

on

Monday, and I just asked him if he was going to be nice to his new friends. He

said. " No. "

I said, " Yes, you need to be nice to them. " " Or what will happen? " he said. His

daddy said

he would be sent to the blue school and I added also that they would put him in

a class for

disabled students who didn't know how to not hit people. " And what else? " he

said,

repeatedly. He was looking for somebody to say, they would send him home. (Or,

to jail!)

He just doesn't understand, because for one thing he has tactile

hyposensitivity, that this

kind of misbehavior is not just a way to avoid going to school. It doesn't even

get through

to him that someone else might get hurt. That's not his intention. He was

thinking of

using it to control his environment. Our goal is to get him educated, but I'm

afraid his

GOAL is to get expelled. So he doesn't get stuck in a boring school that is

going to teach

phonics when he is a visual learner, or teach stuff he learned at 2. Oh, dear.

At 5.5.

And he really isn't a mean kid. He started out his first day at VPK saying " I

love you, " to

the boy in the next car. He likes now to play with other children, usually, and

does so well

at home and on the playground. That's why diagnosis is important, that's why

the

protections for children with behavior problems that are related to their

diagnoses are

written into the law.

Peace,

Kathy E.

>

> > Leila,

> >

> > Since I'm in the same boat as you, I'll put in my 2 cents. We just

> > went through the evaluation with our local school district and we'd

> > been doing EI for the past year. My son will be 3 in September. I

> > don't get the results of his evaluation until Sept 7 but they gave me

> > some info on ASD as I walked out the door so that is what I am

> > expecting. The more I read, the more I realize that the Austism

> > Spectrum is huge. My son is interactive and affectionate too. But he's

> > got a serious language delay, sensory and behavior issues and has a

> > really hard time transitioning from one activity to another (unless he

> > wants to!)

> >

> > From the little I've learned so far, it seems like there are at least

> > 100 things they look for when diagnosing autism and no child has all

> > of them. They look at all of these individual characteristics and

> > behaviors and then determine if your child fits on the autism

> > spectrum. But it is a spectrum - there isn't one form of autism. You

> > can have 100 differnent kids diagnosed with ASD and they are all

> > autistic but how it presents in each one can be dramatically

> > different.

> >

> > But, in the grand scheme of things, even if you don't necessarily

> > agree with an ASD diagnosis, I've been told by numerious people that

> > it is better to accept that diagnosis and move forward with it. I

> > don't know where you live, but here, kids who get the ASD diagnosis

> > have 2-3 times the access to services as kids with other diagnosises.

> >

> > So from my perspective, if they want to label my son as " martian " if

> > that get him more services, I'm okay with it. So even though an

> > austism diagnosis is extremely devastating to hear it can be an

> > important tool in helping your son. Don't reject it outright. And

> > remember that even with an ASD diagnosis, he's the same kid today he

> > was a week ago and you'll love him just the same. But now he has

> > access to services to help him be the kid that he has the potential to

> > be.

> >

> > :-)Tera

> >

> > " It is the mark of an educated mind to be able to entertain a thought

> > without accepting it " .

> >

> > ----- Original Message ----

> > From: leilajindra ljindra@...

> >

> > I have a son named Ozzie. He is just over 3 and he has had a speech

> > delay for a while. He went through EI and is now going to start

> > preschool through the school system in the fall. When he went in for

> > his 3 yr. apt. with his dr. I asked should I be trying to figure out

> > why he is not talking? He has been in speech therapy and shown little

> > improvement. She told me she thought he might be verbal apraxic and

> > told me to go see a developmentalist with him. I looked up apraxia on

> > the internet and found the Cherub foundation web site. When I read

> > Tanner's story it was like I was reading Ozzie's. I just took Ozzie to

> > see the developmentalist today and left there with a diagnosis of

> > Autistic Spectrum Disorder. Should I get a second opinion? He does

> > have sensory and behavioral issues, but he is very affectionate and

> > loving. I'm not sure what to do. I brought up apraxia with the dr. but

> > she felt that since he had the other issues ASD was a better

> > diagnosis. Any advice?

> >

> > Leila

> >

>

>

>