LIfe changes...

[Guest guest]

Dear friends - family?

I feel like a neglectful Aunt (hardly " mom " ). I've not been able to

even lurk effectively this past fall and feel very out of touch with

most of you. However, I am hopeful that life is back on some sort of

an even keel and I can chime in here and there.

My mother is nearing the end of her first round of treatments for

ovarian cancer. They are being brave and heading to Mexico where they

have a time share before they know for sure. If her CA-125 (marker for

her cancer) stays the same, she is done. If it goes down from the last

chemo, she has more to do. We've been at this since July 2, with 8

chemos and one huge surgery behind us. Mom has fared well, but we have

*all* felt her absence in Andy's life. It's been a difficult

transition for all of us - and expensive too!

I also learned that although I like teaching at the community college,

I cannot do night classes. Andy really did NOT fare well with me gone

two nights a week. That plus the enormous amount of " re-learning " and

prep work to do 2, 2-hour lectures a week and I just about died. I

realize the prep work goes down as you repeat the class, but the time

away at night would not. So, I may be feeling the pinch, but Andy will

do much better and HE is more important.

Speaking of Andy - he's almost 19, and will, in theory, " graduate "

from high school this spring. We're starting that transition talk, but

you know..transition to what? The school has nothing to offer that has

any sort of positive attraction for me for Andy. ::sigh:: I'm a little

overwhelmed. I am planning a person-centered planning brainstorm

meeting in March - anyone want to come?

I did get some wonderful information from all of you to share at the

research symposium in the UK. I will be posting it to the website

( info center) when I write an " understandable " version. I

may just record the powerpoint I did. We'll see. You were all very

articulate in your replies, which made it very easy to present. And, I

have to say, in my 10 years of presenting, that was the loudest

applause I have ever heard. I was a little overwhelmed. So THANK YOU

for supporting me so effectively!

I will write another post to tell you what I learned, too, if you

want. Let me know.

One thing I do want to make sure you hear - I did that survey

specifically for that symposium. I gave you all 1 week to respond and

received 170 replies. Let me tell you....those researchers were

STUNNED that many people would respond.

Yay For you!

I " m trying to catch up with everything - How IS everyone?

Much love and respect to you all,

Joan

(Andy's Mom...he's 18+ with DS, Autism, Celiac and nonverbal...and

's Mom...he's...21!)

[Guest guest]

Joan, nice to hear from you, may you and your family continue to

accomplish your challenges you have been dealt with.

Prayers on your mom's health issues.

I see Andy will soon be 19 y/o.

You've mentioned graduate, what other plans do you have out there for

his next transition?

Will he be attending like a Post-secondary type of center?

Until your next post.

Irma,19,DS/ASD

>

> Dear friends - family?

>

> I feel like a neglectful Aunt (hardly " mom " ). I've not been able to

> even lurk effectively this past fall and feel very out of touch with

> most of you. However, I am hopeful that life is back on some sort of

> an even keel and I can chime in here and there.

>

> My mother is nearing the end of her first round of treatments for

> ovarian cancer. They are being brave and heading to Mexico where they

> have a time share before they know for sure. If her CA-125 (marker for

> her cancer) stays the same, she is done. If it goes down from the last

> chemo, she has more to do. We've been at this since July 2, with 8

> chemos and one huge surgery behind us. Mom has fared well, but we have

> *all* felt her absence in Andy's life. It's been a difficult

> transition for all of us - and expensive too!

>

> I also learned that although I like teaching at the community college,

> I cannot do night classes. Andy really did NOT fare well with me gone

> two nights a week. That plus the enormous amount of " re-learning " and

> prep work to do 2, 2-hour lectures a week and I just about died. I

> realize the prep work goes down as you repeat the class, but the time

> away at night would not. So, I may be feeling the pinch, but Andy will

> do much better and HE is more important.

>

> Speaking of Andy - he's almost 19, and will, in theory, " graduate "

> from high school this spring. We're starting that transition talk, but

> you know..transition to what? The school has nothing to offer that has

> any sort of positive attraction for me for Andy. ::sigh:: I'm a little

> overwhelmed. I am planning a person-centered planning brainstorm

> meeting in March - anyone want to come?

>

> I did get some wonderful information from all of you to share at the

> research symposium in the UK. I will be posting it to the website

> ( info center) when I write an " understandable " version. I

> may just record the powerpoint I did. We'll see. You were all very

> articulate in your replies, which made it very easy to present. And, I

> have to say, in my 10 years of presenting, that was the loudest

> applause I have ever heard. I was a little overwhelmed. So THANK YOU

> for supporting me so effectively!

>

> I will write another post to tell you what I learned, too, if you

> want. Let me know.

>

> One thing I do want to make sure you hear - I did that survey

> specifically for that symposium. I gave you all 1 week to respond and

> received 170 replies. Let me tell you....those researchers were

> STUNNED that many people would respond.

>

> Yay For you!

>

> I " m trying to catch up with everything - How IS everyone?

>

> Much love and respect to you all,

> Joan

>

> (Andy's Mom...he's 18+ with DS, Autism, Celiac and nonverbal...and

> 's Mom...he's...21!)

>

[Guest guest]

>

> I see Andy will soon be 19 y/o.

> You've mentioned graduate, what other plans do you have out there for

> his next transition?

> Will he be attending like a Post-secondary type of center?

> Until your next post.

Hi Irma,

Thanks for your prayers. Mom has been central to my strength in being

a mother in general...but especialy to Andy. He misses her. She is

always the best substitute for me if I am unable to be home and can't

do that anymore. HIring people for night time didn't go well this last

term. Whew!

Anyway.

HE is, of course, eligible for FAPE through 21 years. The trouble is,

the " transition program " is so vague. Up until a few years ago they

did not have ANYTHING for kids like Andy. Just job training and if

that wasn't going to work, they had them shredding paper or something.

Most chose not to go to school. Now the Brokerages (who manage

medicaid waivers for us) say that if you're not using school services,

you can't come off the waiting list. If you are already off the

waiting list (we are) then they will not pay for something school

should be providing (it actually is reasonable). So.....

I don't know.

I want something close to home. At least most of the week. The

supervisor (who is a good friend) is recommending a teacher/classroom

at a campus that is a good 25 minute drive from here. Not the farthest

from home...but close!

I think my visions will change after the PCP meeting in March. I

always benefit from hearing other people think outside the box. For

now, I see him with a busy volunteer schedule - meals on wheels is my

favorite notion.

We'll see.......

And, of course, he's still filling book orders here at home. He

doesn't like it when I get busy.

How is doing? What are your thoughts about him?

Joan

[Guest guest]

Hi Joan,

Interesting on what you have mentioned in regards to the Medicaid

Waiver " wait " list and your plans around it.

What a transition challenge going on at this time for Andy.

Definitely always figuring how to work around these types of issues.

I hope you do find a good program for Andy.

I have always admired the work you have always been on top of for Andy.

It is hard to believe when they reach this age and it is time for the

next chapter.

I am actually not enjoying too much on what I have been observing with

the Medicaid Waiver funds,services, & agencies involved.

The services or programs that are already in place for when they age

out of the school system really do not revolve many of our individuals

similar like 's issues.

I am having to get more involved with the political issues for some

changes needed. Have joined several committee board meetings here

locally and out in Austin.

The good thing about jumping into this is the fact that I am not

alone. My friends and I have Founded an adult support group where many

are coming aboard and sharing their experiences or assisting voicing

their concerns and actually taking some action, not just here locally

throughout Texas and we are all uniting.

This past months many who are retired from various school districts or

worked with involving making decisions for the Medicaid Waiver funds

who are retired have also been joining so that they could empower us

parents to work around the system with their inside connections who

are now able to improve the system. Interesting as it is who you know

or how to at least get a foot in the door.

The HCS Medicaid waiver funds revolve around so much towards when they

are placed in Group Homes and most HCS providers who run several of

the group homes which I have looked at have told me that would

not really benefit from places like which they run due to the

interventions or services & dietary intervention he has been

benefiting from.

Not that I am ready for this, just doing my homework to have as an

option if needed.

will also not benefit out at the Day Hab's too, especially out

in the job field.

When 's name comes up from this HCS " wait list " or as the

agencies call it now " Interest list " , which he is #101, besides

looking into having Guardianship I would have to become a

Parent should he continue to live at home. In the mean time only have

POA for him which has helped for now.

He is currently under a different Medicaid Waiver list which is the

CLASS program where he benefits which helps with several of the

services that the HCS does not cover. Such decision to make here

should his name comes up though. I am currently also his provider

under the CLASS program.

has fallen through the school cracks and is currently attending

a Post-secondary (Vocational) program through the school district he

attends but currently has had numerous absents due to his underlying

medical issues so he is missing out here with whatever the school

could provide.

I specifically requested for him not to have anymore job training

skills due to always being denied any form of communication during his

HS school years & when he had begun the transition work centers

attending half day and the communication was not being implemented

across the day or carried over at home.

The school district are now working on this on implementing and

getting him to initiate his wants and needs but of course this only

happens when he attends school. He is under OHI for now.

I am considering about requesting for an ARD/IEP meeting to discuss

about the Homebound route. If not given any assistance here, then I at

least it took it to the next level and left a paper trial.

The next step after this would be to withdrawal him from the school

district all together. There is actually so much to share in regards

to this route so hope I made some sense here.

This is what I am working for now.

I am actually going to commute out to Austin which is about 70 miles

from San so that could attend a community college which

involves Technology training and actually have the Medicaid Waiver

funds which he is currently under help pay for it with God willing

that all will fall into place. I actually discussed this once again

with the Director of this program yesterday out in Austin as he had

assessment done. I would of course love to see if would benefit

from such a program.

On another note, this past Friday I ended up having to get my

Fingerprint done for a criminal background report so that I could

become a Board member with several of my friends who are looking into

the Microboard program. One of my friends is going through the

paperwork to become a provider and so this is work in progress.

Am I ready for this? No.

My friends and I have been given an office too from one of the

personnel out in Austin who will commute in the mean time so that we

may run a Federation of Families for Children's Mental Health.

Interesting how my friends and I are now becoming mentors for other

family here locally with the younger ones.

Most of all I am grateful for everyone who shares about their

experiences or what is out in other states. I really appreciate all

you do and for bringing us all together.

My Best,

Irma,19,DS/ASD

[Guest guest]

Joan,

Good to hear from you with your update. You sure have been kept busy and

yes it sounds a very overwhelming time for you. Prayers and positive

thoughts being sent to your Mother and all the family. Good luck with

Andy’s person-centered planning meeting in March. You may want to look at

the agency website where our son lives HYPERLINK

" http://glenkirk.org/ " http://glenkirk.org/ . One of Glenkirk’s staff

presented their program on person-centered programming at the CARF

(Commission on Accreditation of Rehabilitation Facilities HYPERLINK

" http://www.carf.org/ " http://www.carf.org/ ) Conference last year. The site

link is on the left CARF 2007 Presentation of Glenkirk’s site, the direct

link is HYPERLINK

" http://glenkirk.org/carf%20presentation.html " http://glenkirk.org/carf%20pre

sentation.html . You may find some info in the Power Point and forms that

will be helpful.

Thinking of you.

Louise

HYPERLINK

" http://groups.yahoo.com/group//message/77267;_ylc=X3oDMTJxMGhhMzF2

BF9TAzk3MzU5NzE1BGdycElkAzQxMDMwNQRncnBzcElkAzE3MDUwMTM0ODEEbXNnSWQDNzcyNjcE

c2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTIwMDgwNTA1OA-- " LIfe changes...

Posted by: " jegm2002 " HYPERLINK

" mailto:jegm2002@...?Subject=%20Re%3ALIfe%20changes%2E%2E%2E " jegm2002@

yahoo.com HYPERLINK " http://profiles.yahoo.com/jegm2002 " jegm2002

Sat Jan 19, 2008 8:18 pm (PST)

Dear friends - family?

I feel like a neglectful Aunt (hardly " mom " ). I've not been able to

even lurk effectively this past fall and feel very out of touch with

most of you. However, I am hopeful that life is back on some sort of

an even keel and I can chime in here and there.

My mother is nearing the end of her first round of treatments for

ovarian cancer. They are being brave and heading to Mexico where they

have a time share before they know for sure. If her CA-125 (marker for

her cancer) stays the same, she is done. If it goes down from the last

chemo, she has more to do. We've been at this since July 2, with 8

chemos and one huge surgery behind us. Mom has fared well, but we have

*all* felt her absence in Andy's life. It's been a difficult

transition for all of us - and expensive too!

I also learned that although I like teaching at the community college,

I cannot do night classes. Andy really did NOT fare well with me gone

two nights a week. That plus the enormous amount of " re-learning " and

prep work to do 2, 2-hour lectures a week and I just about died. I

realize the prep work goes down as you repeat the class, but the time

away at night would not. So, I may be feeling the pinch, but Andy will

do much better and HE is more important.

Speaking of Andy - he's almost 19, and will, in theory, " graduate "

from high school this spring. We're starting that transition talk, but

you know..transition to what? The school has nothing to offer that has

any sort of positive attraction for me for Andy. ::sigh:: I'm a little

overwhelmed. I am planning a person-centered planning brainstorm

meeting in March - anyone want to come?

I did get some wonderful information from all of you to share at the

research symposium in the UK. I will be posting it to the website

( info center) when I write an " understandable " version. I

may just record the powerpoint I did. We'll see. You were all very

articulate in your replies, which made it very easy to present. And, I

have to say, in my 10 years of presenting, that was the loudest

applause I have ever heard. I was a little overwhelmed. So THANK YOU

for supporting me so effectively!

I will write another post to tell you what I learned, too, if you

want. Let me know.

One thing I do want to make sure you hear - I did that survey

specifically for that symposium. I gave you all 1 week to respond and

received 170 replies. Let me tell you....those researchers were

STUNNED that many people would respond.

Yay For you!

I " m trying to catch up with everything - How IS everyone?

Much love and respect to you all,

Joan

(Andy's Mom...he's 18+ with DS, Autism, Celiac and nonverbal...-and

's Mom...he's..-.21!)

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