disabled adult child

[foreverobligated]

I know I should explain all my circumstances, especially as it's my first post here. But, testing the waters first - has anyone here ever dealt with not wanting to live with their adult disabled child? My present situation threatens to become a whole lot more hostile and I am confused as to why, just because I gave birth to this person and just because this person came out with a disability, somehow there is a blanket assumption that I am morally and legally obligated to house and support this individual no matter how unmanageable my situation becomes. The assumption I run into all the time is that I should actually be glad to do this.

At the moment I am utterly horrified with the idea of living like this for the rest of my life. I've done 21 years of caring and I'm exhausted by the behavioral issues - physical and low iq problems are not difficult to live with, but drama-seeking torment until I die makes me feel like I'd rather just die today.

Please could someone just let me know if this is an appropriate forum to explore this.

[luise.volta]

Welcome - This is the appropriate forum to be heard and understood. It is a place to be who you are and to tell it how it is. Our experience may be limited but we seldom lack interest, compassion and concern. Many of us have hit places where society demands more of us than we can give...and many of us have given more than was wise.

I know without a doubt that I could not do what you are doing. I would seek a solution that brought about separation without abandonment...an environment that was built to accommodate and satisfy my adult child while I got back to creating one that would support who I am and what I need. I matter, too. That's my take on it. Sending love...

[sesamejane]

I actually think it would do your daughter a disservice to continue to have her dependent on you. You will not be around forever, and she will need to learn to live in the world.  Better now while you are around, and she is young enough to learn to adapt.

I think it would be good for her to enter into the community asap.  I know in some areas they have wonderful programs, and I hope there is one available to you in your area.  If others complain, express your delight that they are so caring.  Give them her contact information, and let them know how much she would enjoy hearing from them. 

what else can you do?

[pam1]

Welcome foreverobligated

Please read the Forum Agreement and WWU History (top two threads in pink) in the category Open Me First.  We ask all new members to do so not b/c there is anything wrong with your post

I'm glad you found us

[Gidget]

As the others have stated I think that your daughter should learn to live without you while you are still around.  Depending of her disability she could be living in a special place suited for herself while you can oversee what is going on.  Taking care of a child doest mean that they have to live with you.  I have 2 friends with disabled children that are not living with their parents and they are doing fine.  The parents visit them or they come to the house for a visit and its like if they were living with some friends except they have supervision.  You need to take care of yourself first in order to be able to take care of your daughter wherever she lives.

[Pen]

Foreverobligated, I am the mother of a disabled adult child. You are not alone in your feelings. I love my child deeply, but we would be close to killing each other if we lived together 24/7, lol. Your AC may not want to live with you either! Mine couldn't wait to be more independent, so we found a suitable home living care situation which is partly paid for with my child's social security payments and partly by Regional Center (an agency funded by private & public funds.) We pay nothing except what we choose to spend. My AC attends a day program, has transportation to and from the program & social activities all paid for by Regional Center. In our rural area there aren't many resources, so I recommend finding placement in a thriving community so your AC has access to more programs and activities. You can then be as involved or uninvolved as you see fit. I agree that your AC needs to get used to living apart from you before the inevitable happens and it becomes a traumatic change for him/her.

Best wishes to you and your AC! Keep us posted.

[foreverobligated]

oh my gosh, thank you all so very much. This is the first time that anyone outside of the immediate living-with-DD situation has shown any comprehension and support for this situation. Today was a bad day. DD announced yet again (several times, escalating until she reached reality tv proportions) that she didn't want to live with me and then she tried to run away (second time in one month). Her brother, 16, had to restrain her.  Her dad had to come over and he ended up reluctantly taking her home with him until I get home from work tomorrow - this is only to prevent her running away while no one is in the house here.

When we talked to her, her dad pointed out that she cannot even cross the street by herself so HOW is she going to run away??? We (ex husband, son, and my fiance who currently lives/works in another state) are very quiet, cooperative, diligent people. We have not raised DD to be a drama queen.  We worry a great deal about how vulnerable she is if she just takes off walking through our inner city streets. If she had somewhere safe to go, at this point I'd just drive her there.

She has no resources, no income. We did not claim SSI at age 18 because her dad, my exhusband, has always had a problem with "charity." I think she would qualify as she has Sotos Syndrome, which causes physical, mental and behavioral disabilities. Her IQ score is mid 70s.  I asked my exhusband, since he's currently not working and has the time, to take her to the Social Security office and get the paperwork started. He didn't.

None of us want to live with her. The only government agency DD is signed up with is DRS, who has done nothing to help her get a job in over a year despite me calling and emailing for progress checks. The only time we hear from them is when another form needs to be signed so they can keep her case open. We currently have two options: live with mom, live with dad. No one else wants her, especially with no income. I have no idea how to even get a social worker. We didn't access any services except through public schools, so this is all new, and comes to me at a point where I'm no longer a housewife with any time to devote to office hours phone calls and appointments. My job prohibits phone or internet usage (I work with govt documents).

Gah! Anyway, thank you so much for being supportive. I'm so very sorry everyone is here because of family stress. I shall have to figure out the SSI process or I will never escape... and neither will DD.

[Pen]

Your DD deserves to be safe and happy, as do you and your family. That's what Social Security is for - use it! Once she's on the rolls she'll be eligible for medical/dental care (although that's being cut away little by little) and other programs. Find the agencies (in our state it's Regional Centers) that help disabled people. They may even be able to take your DD to Social Security to get the paperwork started. You've got to get her into the system & into a safe, healthy living situation. As her parent you owe her that much (IMO), and you deserve to have your freedom too. It'll take some effort & research. The perfect programs will not drop in your lap, you may have to try a couple before you find a good fit.

[Doe]

I don't have personal experience in this area but wanted to add that in our community there are programs where disabled adults are placed in jobs.  The Safeway and Kroger baggers are mostly those clients.  We dealt with a sheltered workshop that did fullfillment for for local businesses.  I had a little job at home for a cosmetic company that was farmed out to that workshop!  The clients we dealt with seemed happy to have a job and a sense of purpose.

[Pooh]

Welcome FO and I echo what the others said.  My disabled uncle was never more happy once he got into a community.  He fought it so hard, but once there...you couldn't get him to leave it now.  Get her signed up for government help and start looking.

[sesamejane]

Pen is so right.  This is about your daughter's health and welfare.  Your former dh is expressing his own insecurities - sounds like he has not fully grasped the situation or maybe not fully accepted it.

If you live in the States, I believe every state has a mental health/developmental disabilities department.  Google or look it up in your yellow pages. 

It sounds as if your ddd is on the same page as you, and rightfully so.  Disabled or not, she is her own person after all.

[Sassy]

The Sotos Syndrome Support Association

http://www.sotossyndrome.org/
1-888-246-SSSA (7772)

[Eggshelz1]

Wow! What a wonderful mom you are FO! I applaud you. I am rooting for your whole family.

And what great support and advice on this site. Aren't we the lucky ones................

[luise.volta]

Yup, it takes a lot of really fine peole to be this "lucky!" Sending love...

[dvg]

I don't have much to add to what the others have posted except to say that your ex should know that SSI is not "charity" - it's part of the Social Security system, which is social insurance, not "welfare."

Your DD would feel more independent, and happier, in a group home - and eventually she will have to be placed somewhere since you won't be around forever and she will probably outlive you.  Better to get the process started now, while you can help her make the transition. 

This will let her be as independent as she can, and her behavior could improve, too.  She probably wants to be treated as an adult but obviously she can't be.  Moving away from home should make her feel "all grown up."