Re: the realities are hard some days...

[Guest guest]

Hi Joan,

I think all of us in this group have thoughts about the future of our kids.

We certainly have all experienced the so called skilled professionals at one

time or another in school. We have all spent endless hours trying to

reeducate school personnel. I often wondered if it was all worth it but I

have to remind myself that hopefully my child may have a good day. One good

day is better than none and what about the other children coming into the

school system behind my child. They may have parents that can't advocate but

that teacher will remember the lessons from me and my child. I have to remind

myself that it is worth every effort and sleepless night. Change in any

system comes slow but it will never happen if there is no parent to make it

happen.I am accustomed to the eye rolls and sighs but that wouldn't happen at

all if I wasn't taking a stance and trying to make a change. The efforts are

recognized. The very people that once thought I was off centered and met me

with opposition are my best allies. Don't get discouraged just keep teaching

them. I don't know of any books or articles but this group is so amazing they

will come up with something.

Charlyne

Mom to Zeb 8 DS-?

[Guest guest]

In a message dated 9/10/2001 8:54:02 PM EST, jmedlen@... writes:

<< It disturbs me to no end that at least in oregon, it won't be any better.

>>

In Oregon it has a lot to do with assertive advocating and writing the plan

in a way. I'm having a heck of a time getting Ray to attend school

right now despite a great teacher, bus driver and the aide that worked at

home during the summer being in the classroom again this year. Call me and

let's see if we can help this family put together a better plan with more

funds. I'm really exhausted from a full day but I do have some ideas.

E-mail me the county so I can think of it before you call. Assuming it is

Multnomah - hard but not impossible.

Peggy

[Guest guest]

I know it's hard....I've been there, (as they say), done that, bought the

t-shirt and lost it.

It just appalls me that there is so little qualified help out there. Illinois

has a " lottery " type fund that pays parents to keep their adult (and younger)

children home instead of in institutions. I forget what it's actually called. I

applied for it, but didn't get drawn this year. They pay adult children, over

19, about $19,000 a year (that's $1583 a month). It's great, if you get your

name drawn. But they draw out of a hat, so to speak, it's purely random. I

only found out about by accident. Maybe some other states have something like

this? I forget what states everyone is from. I specifically asked the ARC rep.

if there was any kind of fund or help for financial assistance that didn't use

the parents income as part of the child's. We get just knocked out of SSI.

Just hang in there, and I'll be praying for you.

[Guest guest]

Joan- I thought it was interesting to see what came up just doing a search

on " transition object " . There are some pertinent links, but I don't know

if they will provide you with the substance that you are looking for.

However, I am listing the following with some comments or the paragraph

about the transition object from that link:

1. This is from a parent on what helped her twins with autism succeed in

Sunday School:

http://www.cfc4him.com/pals.html

When Isaiah and Isaac arrive at church, it is important for them to

have with them a transition object. The twins are fixated on and

enthusiastic about emergency vehicles. So, we have a police car that is our

" get in the van it's time to go to church " transition object, and it is

also our, " we're here! Let's go show Miss Dana our car! " object.

Unfortunately, the large church in Arkansas, for a long time, had not been

a good experience for them. Because of this, we had difficulties getting

them to get out of the van to go into the building. This transition object

helped them to narrow their focus to their fascinating car, and they were

less anxious about entering the church building.

2. This is a *great* overview on autism and some easy ideas.

Reader-friendly. You need Acrobat Reader to open it:

http://www.glc.k12.ga.us/lpbuilder/lptools/lpshared/pdf/autism2.pdf

3. Some great visuals that illustrate a variety of visual strategies- not

quite the take that you are looking for, but the photos would be a great

addition to the files on Visual Strategies:

http://www.dotolearn.com/funstuff/setup/setuphtml/activitychoiceboard.htm

4. This is from a site for students with ADD, but I think is a nice

no-nonsense explanation:

http://maxweber.hunter.cuny.edu/pub/eres/EDSPC715_MCINTYRE/AddStrats.html

Transitions

-Set up routines that prepare the youngster for upcoming transitions.

-Set expectations for behavior BEFORE an activity or event.

-Provide a special " transition object " (e.g., puppet, small stuffed animal)

that accompanies the student to other classrooms, providing a sense of

consistency and support.

Hope there is something useful here. There are some treasures for a lot of

us in most of these sites.

Bed for me. More later.

Beth Mum to Ben, age 11

[Guest guest]

Joan,

Tired isn't the word for it, worn out, frazzled, and much much more. I

totally understand how you feel. I have wondered so often how the

education program can honestly say that they are working on skills to help

our kids fit into society when most of the time the kids are either

babysitted or given just enough to communicate very basic needs of which I

think is more to make the schools job easier than to make the student more

prepared for the " real world " . So often I've had the teachers say that

since Trisha can sign or gesture for drink, eat, hurt, that she can

communicate her basic needs but they are more interested in her social

skills. Every year it's the same for us, I keep telling the school it isn't

enough that she can sign drink, she needs to be able to tell you what kind of

drink she wants, it's not enough she can sign hurt, she needs to be able to

tell you where she hurts, it's not enough to sign eat, she needs to be able

to tell you what she wants to eat, or if she doesn't like it, or if she is

not hungry, etc. I think I will practice what they teach, I will go to the

school and just say/sign " more " and then they can try to figure out what I

mean by more. More what? eat what? drink what? hurt where? They can all

tell you the answers, my child can't. How is that getting her ready for

society and btw, if she goes to Mcdonalds if she just signs eat, would they

know that her favorite food there is chicken nuggets? I keep telling the

school the same thing I keep telling my older son, getting by isn't enough,

you have to strive to do more if you want your life enriched. So, in my

humble opinion, the school is teaching that it's ok just to get by, we

shouldn't worry as long as the kids know a few basic signs/words. As for

Trisha's future, I'm constantly worried about that. My son who is 25 and

loves Trisha very much says he will always take care of her if I'm not able

but what worries me is that he doesn't have a clue at the struggles involved

in advocating for her rights and the rights of others, moma has always taken

care of that, that is why I fight so hard now so that hopefully when the

time comes for my son to take over, Trisha will have gotten the education she

needs/deserves and the battles might not be as bad. Even though I explain

everything we go through he just doesn't grasp just how hard it is. And the

few times he has gone with me to talk with the school he would rather punch

them out than listen to their nonsense and that doesn't help the situation.

(although to be honest there have been a few times a swift punch would have

made me feel better even if for a short time, since I can't do that, I have

to fight back with laws, common sense (which I think gets lost in the

education field) and persaverence(stubborness). Today is my last day at

work, I left my job so that I can advocate more strongly for my child and to

have more time to go to the schools to make sure the IEP is followed. I feel

like billing the school for my time since they don't seem to know what to do

and I have to keep reminding them, or even teaching them. I have been

looking for some kind of work I can do at home but no luck so far. It's

going to be tough until I do something but no where near as tough as it is

for our kids trying to fit into a society that doesn't really understand them

and doesn't really provide the needs for existing after school age. Why is

it that instead of trying to make our lives easier and less stressful,

society often makes it even harder? When a school system uses wrong

terminology, I might not like it but I can live with it, when the school

system doesn't give the education our children need/deserve I don't like it

and I can't live with that. Sorry this is so long but like Joan, I'm tired.

I'm also disgusted that this has continued on for as long as it has, and yes

I realize that it was worse 25 years ago, but the progress is way to slow and

the myths are still going strong. Telling me it was worse years ago is not

helping, telling me that changes will be made is what I want to hear.

Carol

TrishasMom

She isn't typical, She's Trisha

EmpoweringYouths

[Guest guest]

Joan,

Education program are doing the skills that the

children need improvement, etc. on. I used to c0-up

at an elementry school w/ autistic kids, and they( the

teachers) worked hard every day having the children

master the skills that they needed.

I think that now most everyone is beginning to deal

with the skills that the kid needs in the real world,

but I'm not sure.

__________________________________________________

[Guest guest]

I always wonder the future of the child that I

babysitt, etc. all the time. I wonder what the child

is going to be when they grow up, and into high

school, and beyond college. But sometimes I face with

the child today and not worry about the future of that

kid. But I'm just a young adult, so I always think

about what comes next. Just kidding.

__________________________________________________

[Guest guest]

Loriann,

That's cool that a thing like the lottery would

do that to less fortune kids- w/ helping them though

school, etc. I really am amazed that besides

charities, and organizations- other places are

starting to do it.

__________________________________________________

[Guest guest]

I think I said it wrong. It's a fund, I guess for a lack of a better word, but

they draw a certain number from the entries, so it's random. You apply with

just basic information, and they draw the names LIKE a lottery.

The good thing is that once a child qualifies, he gets to keep it when he

becomes 19, it just has more rules on how the money is spent. As a child, they

get from $500-700 a month for the parent to spend any way they want to. As an

adult, there are more rules, like they have to stay with family, not be put in

an institution. They hold the drawing every year at March 31.

Loriann

Wife to Dewight

Mom to , 11 years, Down Syndrome, PDD-NOS and Celiac Disease.

, 2 years and Strong Willed

Both homeschooled.

[Guest guest]

Joan,

I wouldn't mind seeing a younger kid with autism.

So far I've seen school age kids, but I think it

would be neat for me to see if they have the same kind

of carastericits of school age kids do. But then it

depends on the person with the autism. Well I'm

rambling on,

Hope everyone is doing fine with the traggic

days.

__________________________________________________

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