Rough being a mom

[Againsheila]

of a special needs kid.....

His adult family home closed down and we are looking for another one, meanwhile he is home 24/7 and we sure as heck aren't getting paid for it.....The paperwork is massive just to apply to be his caregiver, I'm his mother, why do I have to fill out all this paperwork?

I'm depressed, no vacation for us, no one can handle our son for a week or two. Checked out a new home and they called us to come and get him after less than 24 hours.....Sure did enjoy that little bit of free time...took a nice long bath and everything.

So, ideas? Options?

Just plain old well wishing?

Prayers?

Hugs?

I'll take anything at this point in time....but I'd really appreciate a babysitter....

 

[Phoenix]

Sorry no can do on the rest. Would if I could.

 

[strollingbones]

suddenly my problems seem small...i hope you find a good place...

 

[Big Black Dog]

Everytime I feel sorry for myself alongs comes a story like this. I've got no problems compared to this lady. Have a little rep and an internet hug. Best wishes.

 

[Annie]

I'm sorry, it's so very hard. I had a Down's Syndrome sister, Mary Beth. She was older than I, she died 9 years ago, at 53. An anomaly, my mom was 25 and her first when she was born. My parents had her declared a 'ward of the state' when she was 3. At the same time, they visited her and kept aware of all health issues.

At 18 she was eligible for disability and medicaid. Very high dental and heart surgeries. By the time my brother and I were in high school, we'd learned sign language as she was profoundly deaf. She spent all holidays and family celebrations with us. She went on all family vacations with us.

When I first became aware of her, I was 7; Mary Beth was 15. Even then I thought my parents were 'bad' for sending her away. Now, not so much, (actually I came to that conclusion at about 15). My brother and I had my parents, our home, our friends. When Mary Beth was home, we were very protective of her with others, but she was very difficult, when not being extraordinarily loving. She always had to have everything her way.

While may folks were not 'legally' responsible for her, they did function as her parents in many ways. Always being called by the group home she lived in regarding surgeries, birth control, (a quandary indeed for very Catholic folks, my uncle 'the priest' told them to listen to the caretakers).

I've come to think that society has made things so much more difficult for parents with children that really will never be able to live on their own. In many ways this is connected to the decisions made way back in the 60's and 70's to stop families for putting family members away that were 'just not right.' Today we have mentally ill people wandering the streets, many of which are incapable of taking pills on their own, much less getting them from a pharmacy.

So there are not the placement venues available that you are looking for.

 

[Mr. H.]

Love will find a way.

 

[Againsheila]

I'm sorry, it's so very hard. I had a Down's Syndrome sister, Mary Beth. She was older than I, she died 9 years ago, at 53. An anomaly, my mom was 25 and her first when she was born. My parents had her declared a 'ward of the state' when she was 3. At the same time, they visited her and kept aware of all health issues.

At 18 she was eligible for disability and medicaid. Very high dental and heart surgeries. By the time my brother and I were in high school, we'd learned sign language as she was profoundly deaf. She spent all holidays and family celebrations with us. She went on all family vacations with us.

When I first became aware of her, I was 7; Mary Beth was 15. Even then I thought my parents were 'bad' for sending her away. Now, not so much, (actually I came to that conclusion at about 15). My brother and I had my parents, our home, our friends. When Mary Beth was home, we were very protective of her with others, but she was very difficult, when not being extraordinarily loving. She always had to have everything her way.

While may folks were not 'legally' responsible for her, they did function as her parents in many ways. Always being called by the group home she lived in regarding surgeries, birth control, (a quandary indeed for very Catholic folks, my uncle 'the priest' told them to listen to the caretakers).

I've come to think that society has made things so much more difficult for parents with children that really will never be able to live on their own. In many ways this is connected to the decisions made way back in the 60's and 70's to stop families for putting family members away that were 'just not right.' Today we have mentally ill people wandering the streets, many of which are incapable of taking pills on their own, much less getting them from a pharmacy.

So there are not the placement venues available that you are looking for.

You're right...the government can be so stupid....My son could be employed, when he works, he works diligently, doing repetitive tasks and not stopping until told...but because he is still in diapers, DVR has decided he is unemployable as our state government has decided to put an end to all employment companies that deal strictly with special needs. They seem to think the everyone should be able to work unsupervised at Safeway, or they shouldn't have a job at all.......

 

[Againsheila]

Just so you know what things are like...this is what I received from my son's ddd counselor

Have you contacted any of the other homes on the list I gave you? Unfortunately, Andrew isn’t eligible for an in-home behavioral therapist. I would suggest calling Sound Mental Health at 206-302- and request an intake for ongoing counseling. Let me Know how things work out with the other AFHs referred and if you need another list.

-Marco



From: Sheila XXXXXXXXXX
Sent: Friday, November 06, 2009 5:17 PM
To: Tan, Marco (DSHS/DDD)
Subject: RE: Adult family home




It looks like Francesca isn't going to work out. We need a home with at least two caregivers at all times..do you know any?
Is there any place we can put him in a hurry? Also, we need a behavioral therapist to come in and work with him and his bathroom issues..it's gotten to the point where I can't take him anywhere.....and I don't think anyone is going to want him as long as he is like this. DVR said he would be employable once we solved his toileting issues...HELP!


<<<

Sound Mental Health has already been here and told us to call his DDD counselor, so did DVR. Each agency sends you to another agency and no one ever really helps....

and no list of AFHs with two or more caregivers working at the same time.......

I'm at my wits end, I want to shoot the DDD counselor......

 

[JenyEliza]

As the single (for most of their lives) Mom of teenaged twins, I feel your pain. The closest family we have is 500 miles away from us, and nobody was willing to help with the twins until they were school aged. Certainly not taking them both off my hands at the same time so I could have a break.

I think multiples and special needs kids *really* intimidate relatives and caregivers. Whereas you and I don't "get" why they can't handle him/them with ease....they are truly befuddled and betwixed.

My Mom would have my twins come visit for a week in Florida, but she would have my sister come from Houston to help her with them. She would *never* take them together all alone (even though Mom is married to Dad for 50 years and he is there too).

So....I very well know the feeling of having just had that bath...when a phone call comes in that cuts the break short. Somebody's gotten hurt. Or sick. Or homesick. Or some such something that ends the blessed peaceful relief of a good long hot bath and some "me time".

Don't feel bad for needing that "me time"--it recharges your batteries and makes you much more ready to deal with your son's heavy demands on your time, energy and emotions. Without it--you'd be no good to him *or* yourself.

I'm praying for you both that *just the right* housing and caretaker situation comes up soon for you both.

*hug*
Jeny

 

[JenyEliza]

Hey Sheila....just out of courtesy, I would remove the counselor's email address. I suspect she wouldn't really appreciate your posting it publicly on a mesage board. Just as you wouldn't appreciate it if she did the same to you.

Just a thought....you handle as you see fit.

Best of luck to you...hope something comes through for you soon.

Jen

 

[Againsheila]

Hey Sheila....just out of courtesy, I would remove the counselor's email address. I suspect she wouldn't really appreciate your posting it publicly on a mesage board. Just as you wouldn't appreciate it if she did the same to you.

Just a thought....you handle as you see fit.

Best of luck to you...hope something comes through for you soon.

Jen

I didn't post his email address, unless it's somewhere I missed, that's my email address.

 

[JenyEliza]

I'm sorry, it's so very hard. I had a Down's Syndrome sister, Mary Beth. She was older than I, she died 9 years ago, at 53. An anomaly, my mom was 25 and her first when she was born. My parents had her declared a 'ward of the state' when she was 3. At the same time, they visited her and kept aware of all health issues.

At 18 she was eligible for disability and medicaid. Very high dental and heart surgeries. By the time my brother and I were in high school, we'd learned sign language as she was profoundly deaf. She spent all holidays and family celebrations with us. She went on all family vacations with us.

When I first became aware of her, I was 7; Mary Beth was 15. Even then I thought my parents were 'bad' for sending her away. Now, not so much, (actually I came to that conclusion at about 15). My brother and I had my parents, our home, our friends. When Mary Beth was home, we were very protective of her with others, but she was very difficult, when not being extraordinarily loving. She always had to have everything her way.

While may folks were not 'legally' responsible for her, they did function as her parents in many ways. Always being called by the group home she lived in regarding surgeries, birth control, (a quandary indeed for very Catholic folks, my uncle 'the priest' told them to listen to the caretakers).

I've come to think that society has made things so much more difficult for parents with children that really will never be able to live on their own. In many ways this is connected to the decisions made way back in the 60's and 70's to stop families for putting family members away that were 'just not right.' Today we have mentally ill people wandering the streets, many of which are incapable of taking pills on their own, much less getting them from a pharmacy.

So there are not the placement venues available that you are looking for.

You're right...the government can be so stupid....My son could be employed, when he works, he works diligently, doing repetitive tasks and not stopping until told...but because he is still in diapers, DVR has decided he is unemployable as our state government has decided to put an end to all employment companies that deal strictly with special needs. They seem to think the everyone should be able to work unsupervised at Safeway, or they shouldn't have a job at all.......

Tommy Nobis Center

Sheila....I don't know if this center would be of any help to you, as they are local to Atlanta, GA, but their site might be worth exploring.

The Tommy Nobis (yes, of fooball fame) Center mission statement:

To develop and provide job training and employment
services for youth and adults with disabilities and other
barriers to employment

Serving businesses throughout metro Atlanta, the Tommy Nobis Center enables individuals with disabilities to enter or return to employment and to enjoy productive and independent lifestyles, while contributing to the greater business community. Since 1977 we have helped approximately 20,000 individuals find dignity and success in the workplace.

I have heard absolutely nothing but good stuff about this organization founded by a retired football player. I have donated money to them and know of several local special needs young adults who have been helped by this wonderful team of special angels.

Even if they can't help you directly due to geographical issues, I suspect they have many many valuable contacts and may know of helpful resources in your area and be able to point you in the right direction.....

Best,
Jeny

 

[Annie]

I'm sorry, it's so very hard. I had a Down's Syndrome sister, Mary Beth. She was older than I, she died 9 years ago, at 53. An anomaly, my mom was 25 and her first when she was born. My parents had her declared a 'ward of the state' when she was 3. At the same time, they visited her and kept aware of all health issues.

At 18 she was eligible for disability and medicaid. Very high dental and heart surgeries. By the time my brother and I were in high school, we'd learned sign language as she was profoundly deaf. She spent all holidays and family celebrations with us. She went on all family vacations with us.

When I first became aware of her, I was 7; Mary Beth was 15. Even then I thought my parents were 'bad' for sending her away. Now, not so much, (actually I came to that conclusion at about 15). My brother and I had my parents, our home, our friends. When Mary Beth was home, we were very protective of her with others, but she was very difficult, when not being extraordinarily loving. She always had to have everything her way.

While may folks were not 'legally' responsible for her, they did function as her parents in many ways. Always being called by the group home she lived in regarding surgeries, birth control, (a quandary indeed for very Catholic folks, my uncle 'the priest' told them to listen to the caretakers).

I've come to think that society has made things so much more difficult for parents with children that really will never be able to live on their own. In many ways this is connected to the decisions made way back in the 60's and 70's to stop families for putting family members away that were 'just not right.' Today we have mentally ill people wandering the streets, many of which are incapable of taking pills on their own, much less getting them from a pharmacy.

So there are not the placement venues available that you are looking for.

You're right...the government can be so stupid....My son could be employed, when he works, he works diligently, doing repetitive tasks and not stopping until told...but because he is still in diapers, DVR has decided he is unemployable as our state government has decided to put an end to all employment companies that deal strictly with special needs. They seem to think the everyone should be able to work unsupervised at Safeway, or they shouldn't have a job at all.......

For the last 10 years of Mary Beth's life, she had a boyfriend, (thus the birth control), and a job. Actually she had jobs a boyfriends for the past 35 years. But in the last 10 years of her life, one significant boyfriend and job. For Crayola. She was one of the 'supervisors' to make sure all the boxes of 64 crayons had the right number and colors. She loved it.

In her last two years, she developed Alzheimer's, yes, she was young for that disease, but whenever something could go wrong, she got it. My mom bemoaned that to no end. The unfairness was manifest, all we can hope it was part of God's plan for some reason, damn if any of us could figure that out. So, "God''s will be done." With skepticism. I'm sorry God, but she never did a thing wrong, that she could be aware of.

 

[JenyEliza]

Hey Sheila....just out of courtesy, I would remove the counselor's email address. I suspect she wouldn't really appreciate your posting it publicly on a mesage board. Just as you wouldn't appreciate it if she did the same to you.

Just a thought....you handle as you see fit.

Best of luck to you...hope something comes through for you soon.

Jen

I didn't post his email address, unless it's somewhere I missed, that's my email address.

Oh, ok....I didn't catch that. Is his name Marco TXX? I'd delete that though....no need in publicly posting his name.

I wouldn't post yours either. Spam will arrive in your box faster than you can toss it.

Autmatic spiders crawl the web looking for e-mail addresses posted online just like yours.....

ETA: I see you cleaned it up. Thx.

 

[Againsheila]

Hey Sheila....just out of courtesy, I would remove the counselor's email address. I suspect she wouldn't really appreciate your posting it publicly on a mesage board. Just as you wouldn't appreciate it if she did the same to you.

Just a thought....you handle as you see fit.

Best of luck to you...hope something comes through for you soon.

Jen

I didn't post his email address, unless it's somewhere I missed, that's my email address.

Oh, ok....I didn't catch that. Is his name Marco TXX? I'd delete that though....no need in publicly posting his name.

I wouldn't post yours either. Spam will arrive in your box faster than you can toss it.

Autmatic spiders crawl the web looking for e-mail addresses posted online just like yours.....

ETA: I see you cleaned it up. Thx.

I started posting on the internet way back when Prodigy was the only online service...I used my real name and never regretted it. I figure I'm a pretty honest person. I don't lie about things like some and I don't say things just to hurt others.....Then again, I'm a bit naive and have been told I've led a sheltered life....heck back in college they wouldn't even let me eat the brownies......they wanted me to remain <innocent? naive?>.....