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Parents of disabled kids thread...

dstarkdstark Registered User Posts: 34,241 Senior Member
I have no idea if this thread is going to fly. I was posting here for several years before I ever mentioned I had a disabled kid. Didnt feel like talking about it. When I first found out my youngest daughter was disabled, there was a little denial. I thought she was just developing slowly but she would catch up. After the diagnosis, I told my wife, we arent going to talk about this with others. I didnt tell my parents for years. They knew something was wrong, but they didnt know what. We treated my youngest like my other two kids.

I have a 22 year old daughter with an iq of 62. Physically, she is in pretty good shape. When you get a diagnosis like this, the books say the parents feel like there is a death. I wouldnt go that far. Maybe time has changed things and I have forgotten....

I was writing about our latest SSI experience in the retirement thread. (I discovered my daughter had more than $2,000 in assets). I thought this thread would be more appropriate. I was hijacking that thread. Since I already wrote about SSI, I thought I would go this way...

Jobs are a big deal.

My daughter has two jobs. They are both two hours a week. One job is working in a supermarket where she folds plastic bags. Pays about $8 an hour. The other job she just got is at Banana Republic where she organizes belts and does some stocking. Pays a little over $10 an hour.

We were talking to somebody at the department of rehabilitation and I asked, "How many hours a week do you think my daughter can really work?

Ten hours a week was the answer. I agree that is probably right. So that is our goal. This will cut my daughter's ssi benefits but that is ok.

Of course, we have found it extremely difficult to find my daughter jobs. So..we will see how that goes.

My daughter is a very happy person with a great attitude. I work with special olympics a little bit and I see athletes with psychological, medical issues and financial issues that I dont have to deal with it so I feel fortunate about this.

We have issues. What happens to my daughter when my wife and I are dead is kind of a big issue.

Others want to share their experiences?


Replies to: Parents of disabled kids thread...

  • dragonmomdragonmom Registered User Posts: 5,981 Senior Member
    You can do this...My cousin has been working in sheltered jobs for 30 years. She has a county funded worker who helps her get to where she needs to be. She has lived in a group home for many years, calls mom and dad on her cell phone, goes places with them. It has been enough support that my aunt and uncle are able to attend to the rest to the family needs.
    Your mileage may be different.
    Hugs to you as you figure this stuff out

  • dstarkdstark Registered User Posts: 34,241 Senior Member
    edited July 2014
    CF, my youngest daughter has changed my life. Made me a much better person.

    Death is a pretty big issue.

    We havent looked too deeply into this but the thinking is at some point my daughter is going to move out. She can learn not to rely on us.

    I have mixed feelings about this. At the last special olympics, there was an athlete that was pretty disabled. She lives at a very good group home. This athlete was having trouble walking. She is getting older. She is heavy. She is disabled. So people were blaming the ability to walk on these issues.

    Then somebody took her shoes off. There was fungus on her feet. Part of her feet were raw. She wasnt complaining. Many people with disabilities dont complain. (I dont remember my daughter ever crying).

    Nobody could walk on her feet. This woman lives in one of the better group homes in the United States and her feet are raw.

    I dont think there is any place my daughter can live that can do a better job than my wife and I can. We care more.

  • dstarkdstark Registered User Posts: 34,241 Senior Member
    Dragonmom, I like your post.
  • emeraldkity4emeraldkity4 Registered User Posts: 35,861 Senior Member
    Oh dear.
    The sweet daughter of a friend had been living at a group home, she is a little older than my youngest ( mid 20's) & when they were younger they attended school together.
    The friends daughter learned to read before my daughter did.
    She is intelligent in many ways, but no impulse control. She has had to change group homes several times, for various reasons, but now is also being diagnosed with a mental illness, so she is having to stay in the hospital until someplace is found that is more appropriate.
    It was difficult enough to find a nice place for a young developmentally disabled woman, Im afraid it will be very difficult to find one for someone who is also mentally ill.
    But the parents feel that if she lives with them, her benefits will be cut by too much and they wont be able to care for her by themselves.
    She can be exhausting, but she has a good heart.

    I also have an aunt who is developmentally disabled. She was my late fathers half sister, from his father & we rarely saw her. ( her parents were also divorced, & I don't really remember ever meeting his father)
    She married when she was in her late '20's and she and her husband live in a nice resort town by themselves.
    ( although they have people checking on them)
    They are happy and have had a good life.
    It is challenging I know, but there are always challenges.
  • HImomHImom Registered User Posts: 34,234 Senior Member
    edited July 2014
    My friend has a S with Down's Syndrome. She bought a huge 2-story home that she and he live on the 2nd floor and rent rooms to CC and U students on the lower floor.

    She is slowly teaching him to be more and more independent and plans to live in a condo (which she bought with her pension funds and is currently renting as vacation rental), and turn her home into a group home for highly functioning special needs adults when she retires in a few years, with a married student couple living in the home to keep it going smoothly.

    She has taken courses at the U to learn how to navigate and get her S his services. He works part time in the cafe at the U where she is an Econ prof. It is amazing the progress he has made. She has two other great kids who will likely be trustees to help him get what he needs after she dies.

    I am awed by all she has done and continues to do. Her S is very proud of having a job and very responsible and cheerful to everyone. He can catch the bus and manage his debit card.

    He previously had a job working a few hours per week at Ross but this job is more social and convenient and he loves it! (He enjoyed working at prior job too.)
  • eyemamomeyemamom Registered User Posts: 5,405 Senior Member
    I just hired two young ladies with disabilities for my office this week! I went through ARC, not sure if they're countrywide. They will provide a job coach who will stay with them until they are comfortable. They start Monday, and will work 3 Mondays until the college kids currently do the job leave for school in mid-August. One will work 20 hours a week and I didn't understand this but the second young lady only has funding to work 4 days a week.

    Any advice you can offer would be great! I already told them if they wanted to listen to music they were welcome to, but the girl with autism said she prefers it quiet.

    I'm making it as structured as possible with set hours, set lunch time, and everything lined out for them to do when they are there.

    I think there could be a better job getting the word out about hiring people with disabilities. My familiarity stems from a family member who is disabled (I know we don't use the "r" word anymore, but that was his dx when I was young) and a friend whose daughter is aging out of school and no plan for when school is over. My family member has worked the same job for 30 years! Talk about dedication.
  • bookwormbookworm Registered User Posts: 8,809 Senior Member
    We have job coaches in FL. One woman I've known for years finally has a job bagging groceries.

    Another man lived in a our nicest county apartments. Two people share an apartment, each has his own bedroom. That worked well for 2 years. My client, the dad, visited almost daily, and the young man worked at the county business. Had he been consistent enough, he would have been promoted to a job at Target or the like. His roommate's mother also visited daily.

    Eyemamom, It is great that you are sensitive to these issues and hire.
  • travelnuttravelnut Registered User Posts: 1,955 Senior Member
    edited July 2014
    While I do not have a disabled child, our cousin's child suffered an early head trauma and has been severely compromised since. He is now in his thirties. Always on his parents' minds was navigating the future. Thinking outside the box, the family thought about how interested he was in college sports, marching bands and his age peers.

    SEE BELOW. Sorry -only part of my post went up and this post should be ignored.
  • travelnuttravelnut Registered User Posts: 1,955 Senior Member
    dstark- thanks for starting this thread. It is good to read the responses and can be helpful from a lot of perspectives.

    While I do not have a disabled child, our relative's child suffered an early head trauma and has been severely compromised since. He is now in his thirties. Always on his parents' minds was navigating the future. Thinking outside the box, they thought about how interested he was in college sports, marching bands and his age peers. Local universities were contacted to see if purchasing a property nearby and providing housing for "house parents" would be a good fit for their grad students and perhaps offer something to undergrads interested in this field/internships. Over 8 years ago, they bought a 2 family home near a local CC and have been able to staff it with great people who have some longevity (not necessarily grad students). They have worked to connect to local groups of parents whose children are "aging out" or those who are concerned about options as parents age to try to bring in a roommate or two. This has been more of a challenge, as many are plugging in to existing institutions. It is working well for the family, with son returning home for most weekends and state funding going towards expenses. The young man works part time and there is a lot to do nearby. Structured day programs let care providers work part time jobs or share duties between a couple. Not for everyone, but great to see how homey options can be created. The parents are relieved that he made the transition before it was urgent. It took some effort to get things coordinated with the state as well.

    Best with your daughter, dstark.
  • dstarkdstark Registered User Posts: 34,241 Senior Member
    Travelnut, thanks.

    I appreciate all the stories. The level of disabilities is not important. It is nice to read how people are handling situations.

    Eyemamom, thanks for doing what you are doing.

    poliscinerd, thanks for doing what you are doing. Thanks for the support. I dont live near Palo Alto but thanks. for the generous offer.

    My daughter has a good life. She doesnt know what she doesnt know.

    She is in a day program and it makes her happy. She is with people. She has a busy enough life.

  • oldmom4896oldmom4896 Registered User Posts: 4,065 Senior Member
    dstark, my heart goes out to you and to any family worried about a child with disabilities.

    I have a friend with an adult son who was born very prematurely and has cognitive and physical issues. The family is middle-middle class and they live in a state not known for generous social programs. When the son was in his late 20s they decided that they needed to start looking for a way for him to live more independently. There were ups and downs setting it up and there are still ups and downs but he lives in an apartment with 2 other men with similar needs and an aide. Everyone is very happy with the arrangement, especially the son. This family won't be able to provide a lot (or any) of money for his care when the parents are gone and of course they don't want to burden their younger child, who loves her brother but is considerably younger.
  • glopop11glopop11 Registered User Posts: 186 Junior Member
    Dstark-I remember when my D was diagnosed with learning disabilities and an IQ in the low 70s in second grade. It was like a knife through the heart. They told me she would not make it through high school with a regular diploma. What they didn't tell me was that the learning disabilities were bringing down the IQ score and it was not a true reflection of her actual abilities. It wasn't easy, but she graduated from high school and is now thriving at a small LAC. While your D may have more limits, she may be able to function more independently and take on small increases in responsibility to prepare for the inevitable time when you are gone.

    I work as a nurse at a hospital for kids and young adults with developmental disabilities and co-occurring psychiatric disorders. We serve patients with a wide range of intellectual functioning. One thing that has always struck me is that IQ is not a good indication of a persons actual level of functioning. I've seen some with IQs in the 60s who I would never know had a disability until I had a lengthy conversation with them.

    We get many patients from group homes and other residential settings. They all appear well cared for. Im always amazed at how caring our staff is (it's a big part of why I continue to work at this hospital), even with some of the most very aggressive patients. But sometimes we do miss things. Last week, we found a rash on a very large boy who is mostly independent and doesn't like us looking at his body. I'm not defending defending the foot fungus issue. Clearly if someone is walking in an unusual manner it needs to be checked!!!! But I wanted to let you know that the majority of staff at these homes really do care.

    Also, have you heard of the Ticket to Work program? It allows people on SSI to explore work and earn money without a reduction in benefits. It might be worth checking out.
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