Re: Any used an ADD Coach? and MR diagnosis

[Guest guest]

that is another battle for the MR diagnosis!

DS was on the state of TN wait list for services for MR. He has five IQ tests

around 65. The school psychologist diagnosed him as MR. But there was one

psychological when he was 5 (the first one) where the examiner SAID ON THE

REPORT that it was " invalid due to excessive prompting. " And one other report a

few years later where the examiner, with no test, said " he doesn't look MR. " And

that is an exact quote...just what does MR look like!

Anyway, the state purged him from their wait list citing those two examples. I

tried to fight it, to appeal it. Tried four different attorneys to even write a

letter in DS defense, and was turned down by every one of them because they all

did work for the state of TN. I wrote letters and finally they just quit talking

to me at the state! And I gave up.

But we are getting ready to fight it again. There is no written policy about

purging from the list, it never happens, supposedly, but the state had to get

their " numbers " down of people on the wait list because of a federal law suit,

so instead of moving people off the wait list by providing services, they just

cut, my son was the first.

Even if he were on the wait list again, as I was told by his DMRS counselor, " if

both my husband and I were dead, and DS was living in a cardboard box under a

bridge, then they could put him in crisis level and move him up the list. "

Otherwise, " get in line with about 3,400 other people waiting for services. "

So he really does have low functioning...unfortunately, not tongue in cheek. But

he has other abilities and strengths that make him not " look mentally retarded! "

LOL

He gets no services. We are applying right now for Social Security based on his

work record. He worked for four years in a place that hires people with

disabilities. But I am having such a HARD time filling it out. One of the

questions (with only four lines to fill it out in) says " Describe what you do

from the time you get up until the time you go to bed. " How in the heck does he

answer that!

Hope NC has better services. I am on another list serve called NOEWAIT that is

trying to get the numbers reduced of people who have been on state wait lists

for YEARS. And in TN a diagnosis of autism will get you nothing. With MR you can

at least get on the list and sometimes a small stipend for " community directed

support. " I think it is $125 per quarter? Can't remember.

Sorry for the rant. I just have no more energy left. Fought and fought for very

little in return.

Sue in TN

> >

> > Thanks Roxanna. I will let the group know. Sounds like your father would

have been great, kind and patient is perfect!

> >

> > I just really thought that things would start to get easier by this point,

that he would have learned some coping skills. Unfortunately, he doesn't have

the brilliant CEO hyperactive ADD. He is MR and ADD! so functioning a low level

to begin with. We deal with the same issues over and over, til I just want to

scream!

> >

>

[Guest guest]

Can you go now and get him a psych eval/IQ test by a psychologist? Don't recall

if you have guardianship, but if so, was IQ not mentioned in that paperwork? At

least now they would be looking at the functioning level of a 26 yr old.

NC has a wait list, don't know what the number on it is now. They keep redoing

the Medicaid Waiver (I notice on the website) but there's funding for services

for those not on the Waiver. HOWever, of course they are looking at state

budget and making cuts of services. NC is still in " reform " for quite a few

years now. It was better before they started " reform " so far as services

available though length of time on Waiver list may be shorter now.... Here too,

it's the consumers that suffer. People who do the cutting just don't get " real

life. "

I feel for you!!!

>

> that is another battle for the MR diagnosis!

>

> DS was on the state of TN wait list for services for MR. He has five IQ tests

around 65. The school psychologist diagnosed him as MR. But there was one

psychological when he was 5 (the first one) where the examiner SAID ON THE

REPORT that it was " invalid due to excessive prompting. " And one other report a

few years later where the examiner, with no test, said " he doesn't look MR. " And

that is an exact quote...just what does MR look like!

[Guest guest]

I forgot in last post to mention that the psychological that the state used to

deny him (the one the examiner declared invalid) was a whopping 77 on the IQ

test! The whole criteria in the state of TN, too, was that the MR had to exist

BEFORE the age of 18, which of course, all of the psychologicals were. So I had

a hard time seeing why they would need a current one if the only criteria was

that it be 70 or below and before 18. They had copies of all the IQs but chose

to ignore all of the others.

I am sorry to rant about this, but I have reached a new low this past month with

him. I thought it was a great idea for him to go to Job Corps and get training

in something he loved. He hated his job at the place for people with

disabilities, because, despite what his number IQ read, he was a lot higher

functioning than a lot of workforce and got so bored with something repetitive.

I have an article that I saved that says frequently those " on the spectrum can

test with an IQ of a carrot " and have thought of that a lot!

But, despite the training he got, can't find a job except minimum wage. He has

no health insurance, only works 17 hours a week. I have tried to get job

placement help through Job Corps, Tn Career Services, Goodwill, Signal Centers,

Voc Rehab and the Salvation Army, oh and TRAC, a local agency. At the most, I

have been emailed a list of entry level jobs and told, " call us when you get a

job. " Which means, guess who has to help him go thru job lists, write a cover

letter, take him to turn it in and fill out application, etc. because he no

longer is able to drive since his last car crash. Guess who has to get up in the

middle of dinner most every night he works because " it's slow at work " and he is

getting off early and has no transportation. And all of this for a minimum wage

job that we worked for 8 months to get!

And on top of this, in one week, lost the back of his cell phone. Saw it on the

floor and just looked at it. Lost his wallet, despite the key ringer he got for

Christmas to help him find it in his room, battery dead. Forgot to call the bus

service that will at least take him the 17 miles to work, not pick him up, after

hours, we do that. Forgot to shave, forgot to take enough money for the taxi the

one time he took it home because we couldn't come get him. So, this is the stuff

that the ADD coach would help with, I assume. But I sure don't see how, at least

it would help ME, and give me just a little reprieve. If I make him a to do

list, he will do most of it, but I just want to see SOME little sign that he

might be able to live on his own someday. Or get just a little bit of help from

" outside. " I know, I read these posts and there are lots worse problems, but

dealing with him day after day and seeing NO improvement is hard. Especially

when I feel like we are much worse off than we were three years ago, we are

going backwards! I guess I had high hopes and expectations that the fact he was

able to go to Job Corps and get training in something he loved that he'd go

right into a promising job and find a mentor/chef/cook that would teach him. He

flips burgers, although he got promoted (as he put it, and not sarcastically) to

busboy! So I dont' know if that means he's doing a bad job? or they needed more

help.

Whew, I feel better.

Sue

> >

> > that is another battle for the MR diagnosis!

> >

> > DS was on the state of TN wait list for services for MR. He has five IQ

tests around 65. The school psychologist diagnosed him as MR. But there was one

psychological when he was 5 (the first one) where the examiner SAID ON THE

REPORT that it was " invalid due to excessive prompting. " And one other report a

few years later where the examiner, with no test, said " he doesn't look MR. " And

that is an exact quote...just what does MR look like!

>

[Guest guest]

I feel for you Sue. I wish there were answers. I've been there. Dealing with our local MR/DD has been a nightmare for us. They are so arbitrary in who they decide to help. When we first moved here with our ds who was autistic, they had two people stacking blocks with him in a room, determined that he was "playing" and they couldn't help us. lol. It was such a joke. That was for early intervention. They called when he turned 3 (and qualified for the school program) to see how he was doing. I wanted to tell them to go to hell. This is our tax money at work. Instead, I tearfully told them that "no" things were worse, he was farther behind and now they wanted to test him for seizures because he has lost skills. Their reply, "Oh, so sorry to hear that." that was it.

He did qualify for their services once he was old enough to also qualify for school services. Imagine that. But I soon discovered, they had no services for what he needed. Everything was, "Can't you get that from the school?" Then they have reviews at various ages and when his 6 yo review came up, they booted him out without even meeting him because his IQ was too high. I just got a letter from lady we'd never even talked to before and told he had an IQ that was too high to qualify. I spent one entire year arguing with them to even do the evaluation as required! Then they would drag me along with nonsense. They would agree to do an speech eval, for instance, then they did a bogus eval that used inappropriate testing (used a test that was for kids 3 years younger and he passed, duh) Would not discuss it with me either as I protested and had plenty of eval's from his ST to prove otherwise. same experience as you with the IQ testing. They manufacture their own "data" whether it is true or not. There is no way to argue against this. There is an appeal process but it doesn't work. Another bogus "eval" they did was decided we had to have some idiot come and watch him in the home environment, he was a total moron and asked the dumbest questions. I could write paragraphs on just that piece of comedy. We did not even get an evaluation report from that. But the guy kept trying to follow my kid into the bathroom to watch him go and I kept making him leave. He seemed more like a pervert, lol.

Finally, they agreed to do the stupid in person evaluation that they were required to do in the first place. It was a whole year of me writing letters, calling, complaining....and he qualified for services because even though he has a high IQ, he couldn't even answer simple questions. Everything they asked, he replied, "Yeah!" to. So they made him eligible. And guess what? they have nothing for him. All their programming is geared to the MR and nothing for the kids who are DD and not MR. The director would say, "You really think he needs something like that? Don't you get that at the school?" What a joke. I haven't seen a caseworker in over 3 years. They don't even know he's not in the school system. Or maybe they do and don't care.

I've seen the local MR/DD qualify some kids with AS immediately - without but a few minutes interview. The IQ apparently did not matter for those kids. One person admitted she had to help her kid wipe in bathroom and instant qualification. (They are big on toileting here.) Another kid qualified not because he had AS but because he is nuts. He always was doing weird things due to mental illness, which they don't cover at the MR/DD. But it was so "in your face" that he qualified. My kids did not act out so they gave us grief instead. (I still don't know that those other kids got any help anyway. Just that qualifying was simple for them.)

My older ds qualified for services right away but again, they had nothing appropriate for him. he could have gotten in to any of their programs but they were all for extremely low IQ/ability level clients and not appropriate for him. When it came time for his re-eligibility eval, I just blew it off. I had already spent a year being harassed by these jerks, I couldn't face more. And at the time, my ds was unable to even go to school. So we were really struggling with so much that I could not have taken on another war.

I know that even getting him qualified would mean there was nothing for him anyway. We did apply for job services and haven't heard back from them now in 1 1/2 years. I think they are like so many of these organizations. People think there are places out there for people like our kids who need help. We have all these agencies that say they do take care of these things! But even if you get in, there is nothing there. It is either a joke or like your experience, they trained him and then waved him out the door. The fact that it is not translating to any real job is not their problem. I am to the point now where I'd rather have my tax money back and I could spend it to help my kids and not waste it on bureaucratic nonsense.

Roxanna

Whenever I feel blue, I start breathing again.

( ) Re: Any used an ADD Coach? and MR diagnosis

that is another battle for the MR diagnosis!

DS was on the state of TN wait list for services for MR. He has five IQ tests around 65. The school psychologist diagnosed him as MR. But there was one psychological when he was 5 (the first one) where the examiner SAID ON THE REPORT that it was "invalid due to excessive prompting." And one other report a few years later where the examiner, with no test, said "he doesn't look MR." And that is an exact quote...just what does MR look like!

Anyway, the state purged him from their wait list citing those two examples. I tried to fight it, to appeal it. Tried four different attorneys to even write a letter in DS defense, and was turned down by every one of them because they all did work for the state of TN. I wrote letters and finally they just quit talking to me at the state! And I gave up.

But we are getting ready to fight it again. There is no written policy about purging from the list, it never happens, supposedly, but the state had to get their "numbers" down of people on the wait list because of a federal law suit, so instead of moving people off the wait list by providing services, they just cut, my son was the first.

Even if he were on the wait list again, as I was told by his DMRS counselor, "if both my husband and I were dead, and DS was living in a cardboard box under a bridge, then they could put him in crisis level and move him up the list." Otherwise, "get in line with about 3,400 other people waiting for services."

So he really does have low functioning...unfortunately, not tongue in cheek. But he has other abilities and strengths that make him not "look mentally retarded!" LOL

He gets no services. We are applying right now for Social Security based on his work record. He worked for four years in a place that hires people with disabilities. But I am having such a HARD time filling it out. One of the questions (with only four lines to fill it out in) says "Describe what you do from the time you get up until the time you go to bed." How in the heck does he answer that!

Hope NC has better services. I am on another list serve called NOEWAIT that is trying to get the numbers reduced of people who have been on state wait lists for YEARS. And in TN a diagnosis of autism will get you nothing. With MR you can at least get on the list and sometimes a small stipend for "community directed support." I think it is $125 per quarter? Can't remember.

Sorry for the rant. I just have no more energy left. Fought and fought for very little in return.

Sue in TN

> >

> > Thanks Roxanna. I will let the group know. Sounds like your father would have been great, kind and patient is perfect!

> >

> > I just really thought that things would start to get easier by this point, that he would have learned some coping skills. Unfortunately, he doesn't have the brilliant CEO hyperactive ADD. He is MR and ADD! so functioning a low level to begin with. We deal with the same issues over and over, til I just want to scream!

> >

>

[Guest guest]

Thanks, Roxanna, it helps to see someone else going through this!

I KNOW there are people getting job services/job placement out there. Maybe

(probably!) I am delusional to keep trying, but I get so mad I won't give up!

And things are so bad with him at home. Of course, it is an accumulation of

things, weeks of losing stuff like his wallet, and $50 in four hours and his

cell phone. And then he develops a horrible, nasty attitude that erupted last

night with his father trying to physically throw him out of the house.

Consequently, DS punched hand thru glass pane in window! It was lovely. So, we

HAVE to find an alternative living situation, a transportation solution or

something to relieve the stress on us and a better situation for him.

By the way, since your dad did this...what does an ADD coach do exactly? Do you

know what your dad did and can share. I just assumed I knew, but thought someone

posted a great question about it.

Sue

> > >

> > > Thanks Roxanna. I will let the group know. Sounds like your father would

have been great, kind and patient is perfect!

> > >

> > > I just really thought that things would start to get easier by this point,

that he would have learned some coping skills. Unfortunately, he doesn't have

the brilliant CEO hyperactive ADD. He is MR and ADD! so functioning a low level

to begin with. We deal with the same issues over and over, til I just want to

scream!

> > >

> >

>

[Guest guest]

Sue,

I hope you are able to find something to help your son. I worry if my son will be able to be independent once he becomes an adult. They need to have some type of services for adults. It's frustrating when everything is always a battle to help our kids.

Becky

From: Mimi <sue@...> Sent: Mon, June 28, 2010 9:59:13 PMSubject: ( ) Re: Any used an ADD Coach? and MR diagnosis

I forgot in last post to mention that the psychological that the state used to deny him (the one the examiner declared invalid) was a whopping 77 on the IQ test! The whole criteria in the state of TN, too, was that the MR had to exist BEFORE the age of 18, which of course, all of the psychologicals were. So I had a hard time seeing why they would need a current one if the only criteria was that it be 70 or below and before 18. They had copies of all the IQs but chose to ignore all of the others.I am sorry to rant about this, but I have reached a new low this past month with him. I thought it was a great idea for him to go to Job Corps and get training in something he loved. He hated his job at the place for people with disabilities, because, despite what his number IQ read, he was a lot higher functioning than a lot of workforce and got so bored with something repetitive. I have an article that I saved that says frequently those "on the

spectrum can test with an IQ of a carrot" and have thought of that a lot!But, despite the training he got, can't find a job except minimum wage. He has no health insurance, only works 17 hours a week. I have tried to get job placement help through Job Corps, Tn Career Services, Goodwill, Signal Centers, Voc Rehab and the Salvation Army, oh and TRAC, a local agency. At the most, I have been emailed a list of entry level jobs and told, "call us when you get a job." Which means, guess who has to help him go thru job lists, write a cover letter, take him to turn it in and fill out application, etc. because he no longer is able to drive since his last car crash. Guess who has to get up in the middle of dinner most every night he works because "it's slow at work" and he is getting off early and has no transportation. And all of this for a minimum wage job that we worked for 8 months to get!And on top of this, in one week, lost the back of his

cell phone. Saw it on the floor and just looked at it. Lost his wallet, despite the key ringer he got for Christmas to help him find it in his room, battery dead. Forgot to call the bus service that will at least take him the 17 miles to work, not pick him up, after hours, we do that. Forgot to shave, forgot to take enough money for the taxi the one time he took it home because we couldn't come get him. So, this is the stuff that the ADD coach would help with, I assume. But I sure don't see how, at least it would help ME, and give me just a little reprieve. If I make him a to do list, he will do most of it, but I just want to see SOME little sign that he might be able to live on his own someday. Or get just a little bit of help from "outside." I know, I read these posts and there are lots worse problems, but dealing with him day after day and seeing NO improvement is hard. Especially when I feel like we are much worse off than we were three years ago,

we are going backwards! I guess I had high hopes and expectations that the fact he was able to go to Job Corps and get training in something he loved that he'd go right into a promising job and find a mentor/chef/cook that would teach him. He flips burgers, although he got promoted (as he put it, and not sarcastically) to busboy! So I dont' know if that means he's doing a bad job? or they needed more help.Whew, I feel better.Sue> >> > that is another battle for the MR diagnosis! > > > > DS was on the state of TN wait list for services

for MR. He has five IQ tests around 65. The school psychologist diagnosed him as MR. But there was one psychological when he was 5 (the first one) where the examiner SAID ON THE REPORT that it was "invalid due to excessive prompting." And one other report a few years later where the examiner, with no test, said "he doesn't look MR." And that is an exact quote...just what does MR look like!>

[Guest guest]

Rant away!

Have you researched your state's residential type group homes? Would take some

time. But one of these days (I'm optimistic!) someone you call will actually be

helpful and get him some services!

Just googling around about TN, I'm talking about places like:

http://tn.easterseals.com/site/PageServer?pagename=TNDR_Residential

http://www.breakthroughknoxville.com/Programs.asp

http://www.comop.org/main.html

Where he could live away from home and have support. Some providers (thinking

here in NC) have places with just 2 or 3 living in a home; I think there's some

larger apartment/community type places too.

Oh, I do wonder about when he's thru with college!

>

> I am sorry to rant about this, but I have reached a new low this past month

with him. I thought it was a great idea for him to go to Job Corps and get

training in something he loved. He hated his job at the place for people with

disabilities, because, despite what his number IQ read, he was a lot higher

functioning than a lot of workforce and got so bored with something repetitive.

I have an article that I saved that says frequently those " on the spectrum can

test with an IQ of a carrot " and have thought of that a lot!

[Guest guest]

I am just butting in ...have not followed all this ...but what about OVR (Office of Vocational Rehabilitation)? Can they be of service?? I plan on registering my 14 year old once he gets into 11th grade.

Don't give up...but I know how stressing it all can be. You son sounds just like mine....and mine is 14...my son blows up to and punches stuff...my husband stays calm and I blowup. In fact my son went to bed at 2 a.m. and slept till 5pm today and got up in a foul mood because his dad didn't want to buy him burger king on the way home. OMG. Part can be teen years but I told him he better stop banging things around...and not break anything. I took his phone. When he asked for it...I told him he had to wait ...I told him I am not paying for his phone to treat my husband and myself in such a way. It took a while...I left him alone and now he is calm. He doesn't want to hang with anyone tonight which is just fine with me.

My son loses things, misplaces them, etc. I know they don't do it on purpose ...it is just that they are busy thinking of other things. So, far my son has not lost this phone or his IPOD. He stomped on his old IPOD and went w/out one for 2 years. Now he treats this one much better. And, his phone is his lifeline ...so he is good with it too. But when he was younger he forgot it down by the lake on the picnic table. Some really "sweet" kids...threw it in the lake and laughed about it. Nice.

Take it a step or moment at a time...I know..try calling the nearest OVR office and set something up. It may take awhile but hang in there.

Jan

"In the Midst of Difficulty lies Opportunity" Albert Einstein

Success is not measured by one's position but by the obstacles one has overcome to obtain that position

From: Mimi <sue@...> Sent: Tue, June 29, 2010 12:25:01 PMSubject: ( ) Re: Any used an ADD Coach? and MR diagnosis

Thanks, Roxanna, it helps to see someone else going through this! I KNOW there are people getting job services/job placement out there. Maybe (probably!) I am delusional to keep trying, but I get so mad I won't give up! And things are so bad with him at home. Of course, it is an accumulation of things, weeks of losing stuff like his wallet, and $50 in four hours and his cell phone. And then he develops a horrible, nasty attitude that erupted last night with his father trying to physically throw him out of the house. Consequently, DS punched hand thru glass pane in window! It was lovely. So, we HAVE to find an alternative living situation, a transportation solution or something to relieve the stress on us and a better situation for him. By the way, since your dad did this...what does an ADD coach do exactly? Do you know what your dad did and can share. I just assumed I knew, but thought someone posted a great question about

it.Sue> > >> > > Thanks Roxanna. I will let the group know. Sounds like your father would have been great, kind and patient is perfect!> > > > > > I just really thought that

things would start to get easier by this point, that he would have learned some coping skills. Unfortunately, he doesn't have the brilliant CEO hyperactive ADD. He is MR and ADD! so functioning a low level to begin with. We deal with the same issues over and over, til I just want to scream!> > >> >>

[Guest guest]

Thanks to all for suggestions.

We ARE currently using Vocational Rehab, but for some reason, they will not use

the job placement services they have with him. From what I understand, the way

it works is that Voc Rehab contracts with an organization such as Goodwill. The

man I spoke with at Goodwill has employers he partners with such as Double Tree

hotel (kitchen in particular) and he goes to them and places client (who would

be son). But how in the heck do I get that!!!! But this is all very " top secret "

and I was told by Goodwill NOT to mention to Voc REhab that I had talked to

them. I feel like I am back in IEP land and don't know the " magic words " to get

services.

So, DS gets an emailed list from Voc Rehab, and instructions from Voc Rehab to

" call us when you get a job. "

I have gone " behind VR's back " with every organization I know, emailed his VR

counselor and so far no progress. But as I said, I am so enraged at the " system "

I WON'T give up!

Thsnks,

Sue

> > > >

> > > > Thanks Roxanna. I will let the group know. Sounds like your father would

> >have been great, kind and patient is perfect!

> > > >

> > > > I just really thought that things would start to get easier by this

point,

> >that he would have learned some coping skills. Unfortunately, he doesn't have

> >the brilliant CEO hyperactive ADD. He is MR and ADD! so functioning a low

level

> >to begin with. We deal with the same issues over and over, til I just want to

> >scream!

> > > >

> > >

> >

>

[Guest guest]

Thanks, Chris..

Please, please don’t write me off

that every suggestion I get I throw it away, I DO NOT want to come across like

that at all, so keep sending them…

Our difficulty with group home is no

money. We looked at one in TN, but $990 per month and so far son does not get

social security, they have never even take a “private pay” client and

we just can’t do that! I have not heard of a couple of these will try

them’

I sent a package of stuff to apply for

Social Security yesterday that was at LEAST two inches thick…so if he can

get some $$ that would help pay for that. Part of the difficulty is that

despite what his IQ shows, he can be quite functional and perform at a higher

level than what that number shows. If I could find something with just a couple

of people… the one we looked at in county next to ours was a wonderful

set of 6 apartments, beautifully decorated. But the young men were all very low

functioning. They worked at sheltered workshops, had all their cooking,

cleaning, life needs provided by an aide, could not have relationships with

girls…so that just is not what he needs. But I know we need a break! That’s

why Job Corps was so great. Lived in dorm with pretty strict supervision, but could

date on campus. It was a good environment for him.

I will check these out. I have tried to

contact Breakthrough in Knoxville. I have sent emails to them. I have called

the director and left at least three messages and called another director (on

her cell phone) and left messages over the last month and a half and not ONE

call back. I say this to express some of the frustration I feel at the

non-responsive people here and in the myriad of organizations that I have talked

too. And also, if I may rant a bit more, the crappy way he is treated when he

applies for a job. Yesterday, we went back for the third time, to an upscale

deli downtown. They keep advertising for a line cook, he is perfectly qualified

for this position. The ad says NO PHONE CALLS, APPLY IN PERSON ONLY BETWEEN

2-5. So we again, assemble resume, cover letter, references, copies of ServSafe

cert., copies of letter of recommendation, all in nicely labeled file folder.

Drive the thirty five minutes, arrive at appointed time and once again they are

“busy.” Or yesterday, they were “in a meeting,” and “all-day”

meeting!!! Very frustrating, especially when this is a job on Voc Rehab’s

list, I think that VR could call them up and say that they have someone who

would be perfect for this job. But they won’t, can’t, or

something!!!! So, I have taken another half day from work to help him get all

this together, drive him down there, wait while he waits, for nothing. And then

VR picks up their little check at the end of every month and I get nothing for

acting as his personal job counselor, head hunter, secretary and driver.

If son can get SS, and some sort of

assistance in the form of a coach, personal assistant etc. he might be able to

live on his own…just don’t know when I see some the decisions he’s

made lately and way he cannot handle money.

Thanks, I’ll look into these other

two right now.

Sue Lowery

Windsock Media

(423) 322-5765

www.ronlowery.com

www.thetennesseeriver.com

www.chasinglewisandclark.com

From:

[mailto: ] On

Behalf Of Chris

Sent: Tuesday, June 29, 2010 7:30

PM

To:

Subject: ( ) Re:

Any used an ADD Coach? and MR diagnosis

Rant away!

Have you researched your state's residential type group homes? Would take some

time. But one of these days (I'm optimistic!) someone you call will actually be

helpful and get him some services!

Just googling around about TN, I'm talking about places like:

http://tn.easterseals.com/site/PageServer?pagename=TNDR_Residential

http://www.breakthroughknoxville.com/Programs.asp

http://www.comop.org/main.html

Where he could live away from home and have support. Some providers (thinking

here in NC) have places with just 2 or 3 living in a home; I think there's some

larger apartment/community type places too.

Oh, I do wonder about when he's thru with college!

>

> I am sorry to rant about this, but I have reached a new low this past

month with him. I thought it was a great idea for him to go to Job Corps and

get training in something he loved. He hated his job at the place for people

with disabilities, because, despite what his number IQ read, he was a lot

higher functioning than a lot of workforce and got so bored with something

repetitive. I have an article that I saved that says frequently those " on

the spectrum can test with an IQ of a carrot " and have thought of that a

lot!

[Guest guest]

If you get denied SS...(social security disability)....keep applying and reapplying. You may need to get a lawyer (get one who specializes in it) ....but you will get it for him. And, you will get the back pay. Don't give up...it seems from everyone I know it takes several tries.

Jan

"In the Midst of Difficulty lies Opportunity" Albert Einstein

Success is not measured by one's position but by the obstacles one has overcome to obtain that position

From: Sue Lowery <sue@...> Sent: Wed, June 30, 2010 9:10:54 AMSubject: RE: ( ) Re: Any used an ADD Coach? and MR diagnosis

Thanks, Chris..

Please, please don’t write me off that every suggestion I get I throw it away, I DO NOT want to come across like that at all, so keep sending them…

Our difficulty with group home is no money. We looked at one in TN, but $990 per month and so far son does not get social security, they have never even take a “private pay†client and we just can’t do that! I have not heard of a couple of these will try them’

I sent a package of stuff to apply for Social Security yesterday that was at LEAST two inches thick…so if he can get some $$ that would help pay for that. Part of the difficulty is that despite what his IQ shows, he can be quite functional and perform at a higher level than what that number shows. If I could find something with just a couple of people… the one we looked at in county next to ours was a wonderful set of 6 apartments, beautifully decorated. But the young men were all very low functioning. They worked at sheltered workshops, had all their cooking, cleaning, life needs provided by an aide, could not have relationships with girls…so that just is not what he needs. But I know we need a break! That’s why Job Corps was so great. Lived in dorm with pretty strict supervision, but could date on campus. It was a good

environment for him.

I will check these out. I have tried to contact Breakthrough in Knoxville. I have sent emails to them. I have called the director and left at least three messages and called another director (on her cell phone) and left messages over the last month and a half and not ONE call back. I say this to express some of the frustration I feel at the non-responsive people here and in the myriad of organizations that I have talked too. And also, if I may rant a bit more, the crappy way he is treated when he applies for a job. Yesterday, we went back for the third time, to an upscale deli downtown. They keep advertising for a line cook, he is perfectly qualified for this position. The ad says NO PHONE CALLS, APPLY IN PERSON ONLY BETWEEN 2-5. So we again, assemble resume, cover letter, references, copies of ServSafe cert., copies of letter of

recommendation, all in nicely labeled file folder. Drive the thirty five minutes, arrive at appointed time and once again they are “busy.†Or yesterday, they were “in a meeting,†and “all-day†meeting!!! Very frustrating, especially when this is a job on Voc Rehab’s list, I think that VR could call them up and say that they have someone who would be perfect for this job. But they won’t, can’t, or something!!! ! So, I have taken another half day from work to help him get all this together, drive him down there, wait while he waits, for nothing. And then VR picks up their little check at the end of every month and I get nothing for acting as his personal job counselor, head hunter, secretary and driver.

If son can get SS, and some sort of assistance in the form of a coach, personal assistant etc. he might be able to live on his own…just don’t know when I see some the decisions he’s made lately and way he cannot handle money.

Thanks, I’ll look into these other two right now.

Sue Lowery

Windsock Media

(423) 322-5765

www.ronlowery. com

www.thetennesseeriv er.com

www.chasinglewisand clark.com

From: [mailto:AspergersSu pport@group s.com] On Behalf Of ChrisSent: Tuesday, June 29, 2010 7:30 PM Subject: ( ) Re: Any used an ADD Coach? and MR diagnosis

Rant away! Have you researched your state's residential type group homes? Would take some time. But one of these days (I'm optimistic!) someone you call will actually be helpful and get him some services! Just googling around about TN, I'm talking about places like:http://tn.eastersea ls.com/site/ PageServer? pagename= TNDR_Residentialhttp://www.breakthr oughknoxville. com/Programs. asphttp://www.comop. org/main. htmlWhere he could live away from home and have support. Some providers (thinking here in NC) have places with just 2 or 3 living in a home; I think there's some larger

apartment/community type places too.Oh, I do wonder about when he's thru with college!> > I am sorry to rant about this, but I have reached a new low this past month with him. I thought it was a great idea for him to go to Job Corps and get training in something he loved. He hated his job at the place for people with disabilities, because, despite what his number IQ read, he was a lot higher functioning than a lot of workforce and got so bored with something repetitive. I have an article that I saved that says frequently those "on the spectrum can test with an IQ of a carrot" and have thought of that a lot!

[Guest guest]

Yes, from what I understand OVR contracts with services such as Goodwill. So tell OVR you want them to contact whatever or whoever they contract with to help you son. If they don't, speak with someone such as your Local State Rep. I have my transition folder for my son (it is for PA) but I will look at it and see what agencies they suggest. My son is only 14 but the school is required to begin transitions already.

I will check out my folder and reply to you later tonight...I may have nothing new to tell you but I will try to see if I can help.

Jan

"In the Midst of Difficulty lies Opportunity" Albert Einstein

Success is not measured by one's position but by the obstacles one has overcome to obtain that position

From: Mimi <sue@...> Sent: Wed, June 30, 2010 8:53:49 AMSubject: ( ) Re: Any used an ADD Coach? and MR diagnosis

Thanks to all for suggestions.We ARE currently using Vocational Rehab, but for some reason, they will not use the job placement services they have with him. From what I understand, the way it works is that Voc Rehab contracts with an organization such as Goodwill. The man I spoke with at Goodwill has employers he partners with such as Double Tree hotel (kitchen in particular) and he goes to them and places client (who would be son). But how in the heck do I get that!!!! But this is all very "top secret" and I was told by Goodwill NOT to mention to Voc REhab that I had talked to them. I feel like I am back in IEP land and don't know the "magic words" to get services.So, DS gets an emailed list from Voc Rehab, and instructions from Voc Rehab to "call us when you get a job."I have gone "behind VR's back" with every organization I know, emailed his VR counselor and so far no progress. But as I said, I am so enraged at the "system" I

WON'T give up!Thsnks,Sue> > > >> > > > Thanks Roxanna. I will let the group know. Sounds like your father would > >have been great, kind and patient is perfect!> > > > > > > > I just really thought that things would start to get easier by this point, > >that he would have learned some coping skills. Unfortunately, he doesn't have > >the

brilliant CEO hyperactive ADD. He is MR and ADD! so functioning a low level > >to begin with. We deal with the same issues over and over, til I just want to > >scream!> > > >> > >> >>

[Guest guest]

thanks for the leads…Easter

Seals provides exactly what he needs…their website says that they

provide: semi-independent

Living - For individuals who are higher functioning and can

manage living alone, but may need some assistance in money management, bill

paying or decision making. That would be perfect. I had no idea that autism is

one of Easter Seals main projects. I didn’t even realize they were still

around, I remember them from being a child.

Thanks

Sue Lowery

Windsock Media

From:

[mailto: ] On

Behalf Of Chris

Sent: Tuesday, June 29, 2010 7:30

PM

To:

Subject: ( ) Re:

Any used an ADD Coach? and MR diagnosis

Rant away!

Have you researched your state's residential type group homes? Would take some

time. But one of these days (I'm optimistic!) someone you call will actually be

helpful and get him some services!

Just googling around about TN, I'm talking about places like:

http://tn.easterseals.com/site/PageServer?pagename=TNDR_Residential

http://www.breakthroughknoxville.com/Programs.asp

http://www.comop.org/main.html

Where he could live away from home and have support. Some providers (thinking

here in NC) have places with just 2 or 3 living in a home; I think there's some

larger apartment/community type places too.

Oh, I do wonder about when he's thru with college!

>

> I am sorry to rant about this, but I have reached a new low this past

month with him. I thought it was a great idea for him to go to Job Corps and

get training in something he loved. He hated his job at the place for people

with disabilities, because, despite what his number IQ read, he was a lot

higher functioning than a lot of workforce and got so bored with something

repetitive. I have an article that I saved that says frequently those " on

the spectrum can test with an IQ of a carrot " and have thought of that a

lot!

[Guest guest]

I didn't know that either...will keep that in mind

"In the Midst of Difficulty lies Opportunity" Albert Einstein

Success is not measured by one's position but by the obstacles one has overcome to obtain that position

From: Sue Lowery <sue@...> Sent: Wed, June 30, 2010 9:42:35 PMSubject: RE: ( ) Re: Any used an ADD Coach? and MR diagnosis

thanks for the leads…Easter Seals provides exactly what he needs…their website says that they provide: semi-independent Living - For individuals who are higher functioning and can manage living alone, but may need some assistance in money management, bill paying or decision making. That would be perfect. I had no idea that autism is one of Easter Seals main projects. I didn’t even realize they were still around, I remember them from being a child.

Thanks

Sue Lowery

Windsock Media

From: [mailto:AspergersSu pport@group s.com] On Behalf Of ChrisSent: Tuesday, June 29, 2010 7:30 PM Subject: ( ) Re: Any used an ADD Coach? and MR diagnosis

Rant away! Have you researched your state's residential type group homes? Would take some time. But one of these days (I'm optimistic!) someone you call will actually be helpful and get him some services! Just googling around about TN, I'm talking about places like:http://tn.eastersea ls.com/site/ PageServer? pagename= TNDR_Residentialhttp://www.breakthr oughknoxville. com/Programs. asphttp://www.comop. org/main. htmlWhere he could live away from home and have support. Some providers (thinking here in NC) have places with just 2 or 3 living in a home; I think there's some larger

apartment/community type places too.Oh, I do wonder about when he's thru with college!> > I am sorry to rant about this, but I have reached a new low this past month with him. I thought it was a great idea for him to go to Job Corps and get training in something he loved. He hated his job at the place for people with disabilities, because, despite what his number IQ read, he was a lot higher functioning than a lot of workforce and got so bored with something repetitive. I have an article that I saved that says frequently those "on the spectrum can test with an IQ of a carrot" and have thought of that a lot!

[Guest guest]

You're welcome. I was trying to again find that webpage I got some of those

provider names from, but of course can't (yet). I do some typing for case

managers who work with DD and MR clients. I know Easter Seals is the provider

for one (he has more dx than just AS) and he's doing well living in a home and

with services from them (he needs 24 hr staff). There are other providers that

also have group homes or some type residential. So I know they're " out there "

somewhere, just have to find them and those with the staff/personnel that are

actually good & care.

Now if you can just get him that SSI and Medicaid/state insurance....

>

> thanks for the leads.Easter Seals provides exactly what he

> needs.their website says that they provide: semi-independent Living - For

> individuals who are higher functioning and can manage living alone, but may

> need some assistance in money management, bill paying or decision making.

> That would be perfect. I had no idea that autism is one of Easter Seals main

> projects. I didn't even realize they were still around, I remember them from

> being a child.

[Guest guest]

Sue, here's that web page I got those earlier links from, like Easter Seals:

http://kc.vanderbilt.edu/tennesseepathfinder/ServiceFinder/Default.aspx

I just picked " state " for the geographic area, and " residential services " for

the service category.

>

>

> >

> > thanks for the leads.Easter Seals provides exactly what he

> > needs.their website says that they provide: semi-independent Living - For

> > individuals who are higher functioning and can manage living alone, but may

> > need some assistance in money management, bill paying or decision making.

> > That would be perfect. I had no idea that autism is one of Easter Seals main

> > projects. I didn't even realize they were still around, I remember them from

> > being a child.

>

[Guest guest]

I'm so sorry to hear about the fighting. Does he take any meds.

I don't know a lot about the ADHD coach stuff. I thought it was where people would have someone to talk to when they needed it, someone to help mentor them and guide them in the right direction.

Roxanna

Whenever I feel blue, I start breathing again.

( ) Re: Any used an ADD Coach? and MR diagnosis

Thanks, Roxanna, it helps to see someone else going through this!

I KNOW there are people getting job services/job placement out there. Maybe (probably!) I am delusional to keep trying, but I get so mad I won't give up! And things are so bad with him at home. Of course, it is an accumulation of things, weeks of losing stuff like his wallet, and $50 in four hours and his cell phone. And then he develops a horrible, nasty attitude that erupted last night with his father trying to physically throw him out of the house. Consequently, DS punched hand thru glass pane in window! It was lovely. So, we HAVE to find an alternative living situation, a transportation solution or something to relieve the stress on us and a better situation for him.

By the way, since your dad did this...what does an ADD coach do exactly? Do you know what your dad did and can share. I just assumed I knew, but thought someone posted a great question about it.

Sue

> > >

> > > Thanks Roxanna. I will let the group know. Sounds like your father would have been great, kind and patient is perfect!

> > >

> > > I just really thought that things would start to get easier by this point, that he would have learned some coping skills. Unfortunately, he doesn't have the brilliant CEO hyperactive ADD. He is MR and ADD! so functioning a low level to begin with. We deal with the same issues over and over, til I just want to scream!

> > >

> >

>

[Guest guest]

In PA, there is a Provider 50 program and my son had it. He had a mobile therapist and a TSS worker and a case manager who all came to the house to work with him. I had to register him at the Public Assistance Office and he got a Medical Card. It has nothing to do with income...it was all due to his DX of Asperger's.

Jan

"In the Midst of Difficulty lies Opportunity" Albert Einstein

Success is not measured by one's position but by the obstacles one has overcome to obtain that position

From: Roxanna <MadIdeas@...> Sent: Fri, July 2, 2010 1:52:36 PMSubject: Re: ( ) Re: Any used an ADD Coach? and MR diagnosis

I'm so sorry to hear about the fighting. Does he take any meds.I don't know a lot about the ADHD coach stuff. I thought it was where people would have someone to talk to when they needed it, someone to help mentor them and guide them in the right direction.

RoxannaWhenever I feel blue, I start breathing again.

( ) Re: Any used an ADD Coach? and MR diagnosis

Thanks, Roxanna, it helps to see someone else going through this! I KNOW there are people getting job services/job placement out there. Maybe (probably!) I am delusional to keep trying, but I get so mad I won't give up! And things are so bad with him at home. Of course, it is an accumulation of things, weeks of losing stuff like his wallet, and $50 in four hours and his cell phone. And then he develops a horrible, nasty attitude that erupted last night with his father trying to physically throw him out of the house. Consequently, DS punched hand thru glass pane in window! It was lovely. So, we HAVE to find an alternative living situation, a transportation solution or something to relieve the stress on us and a better situation for him. By the way, since your dad did this...what does an ADD coach do exactly? Do you know what your dad did and can share. I just assumed I knew, but thought someone posted a great question about

it.Sue> > >> > > Thanks Roxanna. I will let the group know. Sounds like your father would have been great, kind and patient is perfect!> > > > > > I just really thought

that things would start to get easier by this point, that he would have learned some coping skills. Unfortunately, he doesn't have the brilliant CEO hyperactive ADD. He is MR and ADD! so functioning a low level to begin with. We deal with the same issues over and over, til I just want to scream!> > >> >>