Re: living beyond 21

August 30, 2006

Dianne,

There are many families you are talking to. My son is 18 years old,

Asperger Syndrome/autism spectrum, passions of computer, art,

collecting music, studying the dictionary, who is quiet, kind, tends to

withdraw and when overwhelmed goes into depression. I don't like the

sneakiness of depression, so I am anxious about him. My question

of " How are you " always carry a little thought of how I've seen

him when he is down.

Anyways, your question is huge.........there are many families out

there trying to address it. I can tell you that some of the advocates

who are in this group here are some of the finest parents I could

imagine - they write, visit Texas legislatures, advocate IEP and ARD's,

put out great information, and yet try to find a way to advance their

ASD loved ones needs.

I think you will see this more and more........as time progresses. I

tend to agree with you. Part of the problem is that Autism is so

underfunded and is a " puzzle " . It is also quite apparent that the

State of Texas has a long way to go...........Ground is being made, but

it is this generation (and those in the past as well) that are making

it better for the one's who have younger ASD loved ones.

I can go on and on. I did not add any real substance to your wonderful

post, but I just wanted to agree with you.

Mark

Carrollton, Texas

>

> What I know to be true is that there seems to be nothing much at the

> end of formal education that is meant to enhance the lives of those

> with life-long challenges such as those with Autism. There may be

> opportunities out there that I haven't discovered yet but there can't

> be enough good ones or we'd all have heard.

>

> What would everyone like for their loved one in the way of community,

> living independently, employment., etc. How can we reach everyone and

> find out what is needed to secure the future for so many?

>

> I rarely see this discussed and I hope I am able to initiate some

> response.

> Dianne

>

August 30, 2006

Dianne,

Tonight, I went to my first 17 and up group meeting for social group

at Callier Center at University of Texas at Dallas for an

Asperger/HFA group meeting. It was so exciting for me to meet these

young people. I was the only parent to show up with my son. With

that I was a little disappointed...I wanted to meet some parents. I

introduced my son to one young man. I was so eager to meet him. I

then went about the room introducing myself to four young men, all

sitting by themselves, each one not knowing the other. Very normal.

I wanted to meet these people and before Ms Lucinda Dean,

Communication Disorder professor (?), took them back to the room for

the group meeting, I was able to quickly meet three young men.

Tim - very nervous, slight stim with hands, He often said " He was

nervous, was proud of his high school, was working at a grocery store

I think, his brother was going to UTD, first time here tonight, 25

years old, said he had not been doing much lately.....

Randy - drove on his own, had taken three semesters of 12 hours or

more at Richland College (I'm was amazed). His demeanor was slightly

withdrawn, but his eyes brightened when I kept asking question after

question about his life. I felt so good just asking him questions,

because he warmed up as I asked more questions. He was a quiet type

AS I believe. He went to Dallas Academy for High School. He was 20.

Cliff (?)- from Sherman, 27 years old, said he had not been doing

much, was very swift to say things, but comments were slightly odd.

He was wondering who I was and was not sure why I was asking about

the group. I told him my 18 year old AS son was here for the first

night. He was quick to say " That there are many types of Asperger

people " , when I made some comment about my son. The interesting

thing was that he was " shy " to make eye contact and even put up a

magazine to his face when talking to me at first. He drives and

drives apparently pretty well.....he said he lives with his family in

Sherman. I think he was going to Collin County Community College.

The reason I write this is partly because of your question. Here are

these young men, four in all, including my son. Out of the four only

one parent was with them - me. Two were driving. Two were not (my

son struggles with it, except for short distance). They all showed

amazing AS typicals, but they were all different. One was aloof, one

nervous, one quiet (my son) and one very talkative.

To be honest, I was so glad to come early to the 4:30 meeting,

because I so desperately wanted to meet young men like my son. I was

so eager to shake and talk with these men that at times I

was " verklempt " ......think Saturday Night Live :>)

When I came back at 5:30 the group came out. There were 12 or so

young people. Only one was female. The young men who could drive

departed fairly quickly.

In short, I think this may be a snap shot of why things change as our

ASD loved ones grow up. They start to leave the nest......they are

all struggling......they find help from those out there who care.

My personal opinion is that there is just not enough supporting

people out there who care. Much of it has to do with money IMHO,

because AUTISM is so underfunded. I wanted to meet people, but so

many of them quickly or quietly departed. I spent some time talking

with Ms. Lucinda Dean and I was so eager to hear more. I want so

much to know how these young people are doing, but it's like parents

are supposed to move on.

I wonder if I can.......I guess I'll just have keep coming and being

an obsessive Dad.

Mark

>

> What I know to be true is that there seems to be nothing much at

the

> end of formal education that is meant to enhance the lives of those

> with life-long challenges such as those with Autism. There may be

> opportunities out there that I haven't discovered yet but there

can't

> be enough good ones or we'd all have heard.

>

> What would everyone like for their loved one in the way of

community,

> living independently, employment., etc. How can we reach everyone

and

> find out what is needed to secure the future for so many?

>

> I rarely see this discussed and I hope I am able to initiate some

> response.

> Dianne

>

August 30, 2006

I don't know a lot about the Judevine treatment center in MO, but I know they

address this topic. You might google them and see what they could add to the

topic.

-Amy in AR

" Everyone is a visionary if you scratch him (her) deep enough, but the Celt is

a visionary without scratching. " - Yeats

August 30, 2006

Dianne,

I've looked and found very little in the way of opportunities out here where

we live (Houston, Katy, Cypress area). You're off to a good start in getting

the ball rolling by initiating this post.

I think we need to work on everything you mentioned: safe, affordable public

transportaion to enable persons to work, shop, go to appointments, and attend

classes; classes geared to individual levels; and community activities for

social interaction.

I'm interested in helping in this endeavor so please let me know if I can help

in any way.

Delia

Dianne wrote:

What I know to be true is that there seems to be nothing much at the

end of formal education that is meant to enhance the lives of those

with life-long challenges such as those with Autism. There may be

opportunities out there that I haven't discovered yet but there can't

be enough good ones or we'd all have heard.

What would everyone like for their loved one in the way of community,

living independently, employment., etc. How can we reach everyone and

find out what is needed to secure the future for so many?

I rarely see this discussed and I hope I am able to initiate some

response.

Dianne

August 30, 2006

I'm not sure I am actually answering the original question, but I want to share

something related.

Texanna, which is the MHMRA serving Ft. Bend and several other counties south of

Houston, has day-habilitation programs. I believe the programs had previously

left much to be desired, but recently the staff at the programs have been

undergoing training in ABA through the PBS Grant program, a grant funded by the

state to increase the use of positive behavioral strategies. Even the

psychologists who oversee the day-hab programs are now being required to be

trained in ABA.

Clients who were formerly being left with little to do are now using activity

books or activity schedule systems, behaviors are being managed through

reinforcement procedures, and clients are being taught new language and learning

skills.

I would love to hear from someone whose child is currently in a Texanna day-hab

program and whether or not you have seen changes recently. It certainly looks

like Texanna is taking the right steps to create programs where individuals with

autism can continue to learn and make progress. If it's successful, perhaps it

will be a model for other programs.

Geraldine

Re: living beyond 21

Dianne,

I've looked and found very little in the way of opportunities out here where

we live (Houston, Katy, Cypress area). You're off to a good start in getting the

ball rolling by initiating this post.

I think we need to work on everything you mentioned: safe, affordable public

transportaion to enable persons to work, shop, go to appointments, and attend

classes; classes geared to individual levels; and community activities for

social interaction.

I'm interested in helping in this endeavor so please let me know if I can help

in any way.

Delia

Dianne wrote:

What I know to be true is that there seems to be nothing much at the

end of formal education that is meant to enhance the lives of those

with life-long challenges such as those with Autism. There may be

opportunities out there that I haven't discovered yet but there can't

be enough good ones or we'd all have heard.

What would everyone like for their loved one in the way of community,

living independently, employment., etc. How can we reach everyone and

find out what is needed to secure the future for so many?

I rarely see this discussed and I hope I am able to initiate some

response.

Dianne

August 31, 2006

Although my daughter is not yet 21, she was " pushed " out of the public

school system at 19 because our district feels they only need to serve

" severely affected " students until the age of 21. If you have earned your

high school credits, they see no need for you to continue attending. So,

even though she is only 19, we are already facing the " over 21 " issues.

What I have noticed for some time is that the situation in Texas (and likely

pretty much everywhere in the US) is that we seem to have 2 options no

matter what the functioning level of our child is: they can either be

completely enabled and totally independent or they can be completely

disabled and completely dependent on others. There is no program, service,

or support for anyone who falls in between those two extremes.

ly, although there are many individuals who, unfortunately for whatever

reason, remain severely affected throughout their lives, there are an awful

lot of individuals with ASD who fall between the " totally dependent " area

and the " completely independent " level. In fact, I personally only know a

tiny handful of " completely independent " individuals - most of those are

authors/speakers/university professor types with very mild AS or HFA, and

they are a tiny minority of the totality of individuals with autism. Most

individuals with ASD...regardless of the specific label, continue to need

some measure of support for the entire lives. And that is where the adult

service system fails miserably. They don't have a clue how to provide " some "

support...it is all or nothing. And the support they do provide even for

those who have intense needs is often inappropriate for individuals with

autism.

I know Martha M. has really been a trailblazer here in Texas trying to get

the state to provide the " some " and the " individualized " type of services

that her son (and frankly all of our children) need as adults. She has

worked very hard and accomplished many things that I would have thought were

not possible in this state. (Martha...maybe you should be giving a workshop

for the rest of us on what you did!) But she is only one person in this

great big state. I cringe at the thought of having to, now that we have

finished our 14 years of battling with the school district, spend the rest

of my daughter's life battling with the state. And for us all to do it

individually, one by one by one, just doesn't make sense. That is an

extremely slow and ineffective way to change the system.

We all hope and pray when our children are young that they will accomplish

miracles...that they will be the one who recovers and is a Temple Grandin or

a Shore. Unfortunately, however, that isn't in the cards for the

majority of us and our kids. So we need to figure out a way to get the

system to change to meet the needs of our population of individuals. But it

is going to take a large scale, concerted, organized, grass roots effort.

The kids who are in their early 20's are just the beginnings of the

" epidemic " of kids with ASD. At some point we will all be at the door to

adult services...except there pretty much aren't any. We can't wait to fix

this problem. No one planned in advance for our kids, so we have to get this

fixed NOW. I for one don't want to try to do it alone!

nna

August 31, 2006

Eloquent as always! Count me in!! Garrett's only 12, but 21 will come

too quickly!

Tonya

Re: living beyond 21

Importance: High

Although my daughter is not yet 21, she was " pushed " out of the public

school system at 19 because our district feels they only need to serve

" severely affected " students until the age of 21. If you have earned

your

high school credits, they see no need for you to continue attending. So,

even though she is only 19, we are already facing the " over 21 " issues.

What I have noticed for some time is that the situation in Texas (and

likely

pretty much everywhere in the US) is that we seem to have 2 options no

matter what the functioning level of our child is: they can either be

completely enabled and totally independent or they can be completely

disabled and completely dependent on others. There is no program,

service,

or support for anyone who falls in between those two extremes.

ly, although there are many individuals who, unfortunately for

whatever

reason, remain severely affected throughout their lives, there are an

awful

lot of individuals with ASD who fall between the " totally dependent "

area

and the " completely independent " level. In fact, I personally only know

a

tiny handful of " completely independent " individuals - most of those

are

authors/speakers/university professor types with very mild AS or HFA,

and

they are a tiny minority of the totality of individuals with autism.

Most

individuals with ASD...regardless of the specific label, continue to

need

some measure of support for the entire lives. And that is where the

adult

service system fails miserably. They don't have a clue how to provide

" some "

support...it is all or nothing. And the support they do provide even for

those who have intense needs is often inappropriate for individuals with

autism.

I know Martha M. has really been a trailblazer here in Texas trying to

get

the state to provide the " some " and the " individualized " type of

services

that her son (and frankly all of our children) need as adults. She has

worked very hard and accomplished many things that I would have thought

were

not possible in this state. (Martha...maybe you should be giving a

workshop

for the rest of us on what you did!) But she is only one person in this

great big state. I cringe at the thought of having to, now that we have

finished our 14 years of battling with the school district, spend the

rest

of my daughter's life battling with the state. And for us all to do it

individually, one by one by one, just doesn't make sense. That is an

extremely slow and ineffective way to change the system.

We all hope and pray when our children are young that they will

accomplish

miracles...that they will be the one who recovers and is a Temple

Grandin or

a Shore. Unfortunately, however, that isn't in the cards for the

majority of us and our kids. So we need to figure out a way to get the

system to change to meet the needs of our population of individuals. But

it

is going to take a large scale, concerted, organized, grass roots

effort.

The kids who are in their early 20's are just the beginnings of the

" epidemic " of kids with ASD. At some point we will all be at the door to

adult services...except there pretty much aren't any. We can't wait to

fix

this problem. No one planned in advance for our kids, so we have to get

this

fixed NOW. I for one don't want to try to do it alone!

nna

Texas Autism Advocacy

www.TexasAutismAdvocacy.org

Texas Disability Network

Calendar of Events

www.TexasAutismAdvocacy.org

August 31, 2006

If you look at the State of the States report that ranks the states

according to numerous stats, TX ranks at the bottom for adult services for

people with disabilities and even lower for numbers of these people

gainfully employed. I went to a pre-voc conference and was very saddened to

hear that TX is so far behind other states. For example, we were told that

Florida has 70% of those with disabilities gainfully employed compared to 7%

in TX. Personally, I feel this state was not the place to be for services

as a child and now I know it is just as bad for adults so we are looking

into what states do offer what we feel is best for our son. This is a sad

state of affairs. Other states have the backing of their state government

for these programs. TX is not even to that stage yet. Other states

local and state governments have contracts with large corporations to ensure

they hire those with special needs. Marriott was one in CA and FL.

Texas has a long way to go.

If you would like to know more, let me know. The parents at this conference

came to the conclusion that we really do need to move to a state that offers

what our children need.

in Austin