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Parents of disabled kids thread...

dstarkdstark 33322 replies919 threads 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?

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Replies to: Parents of disabled kids thread...

  • dragonmomdragonmom 5931 replies154 threads 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

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  • dstarkdstark 33322 replies919 threads 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.

    edited July 2014
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  • dstarkdstark 33322 replies919 threads Senior Member
    Dragonmom, I like your post.
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  • emeraldkity4emeraldkity4 34785 replies1076 threads 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.
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  • HImomHImom 35105 replies395 threads 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.)
    edited July 2014
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  • eyemamomeyemamom 5428 replies79 threads 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.
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  • bookwormbookworm 9098 replies72 threads 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.
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  • travelnuttravelnut 1993 replies15 threads 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.
    edited July 2014
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  • travelnuttravelnut 1993 replies15 threads 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.
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  • dstarkdstark 33322 replies919 threads 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.





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  • oldmom4896oldmom4896 3928 replies292 threads 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.
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  • glopop11glopop11 177 replies9 threads 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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  • dstarkdstark 33322 replies919 threads Senior Member
    Oldmom4896, thanks. I like your post. I wonder how people without means handle these situations so it makes me happy to see things are working out for your friends.

    Glopop11, your daughter is a great story. I am glad it is working out for her.
    I like the other stories too.

    My daughter is more disabled than your daughter. I think she can live independently with periodical adult supervision . It is not time yet .

    I have never heard of ticket to work. I may look into this.

    I think my daughter is going to get another job. Putting labels on bottles. It is in the works.

    Things are good.
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  • dstarkdstark 33322 replies919 threads Senior Member
    edited July 2014
    Mamita, I missed your post earlier.

    Great post.

    I asked somebody who works with the calif dept of rehab, has experience and knows my daughter how many hours a week my daughter can work and the answer was 10. That is her stamina or ability.

    You brought up an issue that is important to us. I dont want my daughter sitting around watching tv all day. The dept of rehab thinks they can get my daughter 10 hours a week of work, but then my daughter loses the day program.

    That is not a trade we are going to do.
    We are working with the day program to increase my daughter's working hours. She had 3 interviews before she got the banana republic job. :)


    We have a special needs trust.

    Mamita, what is it like to be a sibling and deal with this issue?
    edited July 2014
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  • musicmommusicmom 2460 replies89 threads Senior Member
    Dstark and I have 'spoken' about our special needs daughters through a few PM s here on CC.
    I am glad he started this thread. I believe we can learn ALOT from each other.

    Our daughter is 25, and moderately developmentally disabled. She graduated from an excellent out of district special needs school at 21. She works at a vocational workshop on simple assembly and packaging contract jobs. The work is easy for her and she mostly enjoys the friendships and socializing at lunch!
    Her math/money skills are minimal but her vocabulary is very good and she can hold her own in a conversation with typical peers and older adults.
    She is developing her stamina and focus and there is probability she can transition to a job at a Wal-Mart type setting at some point.

    The services we have in nj are good but there are waitlists for many, most importantly, housing.
    I've been spending many days off work in last year tracking down public housing and affordable housing options and filing out mounds of paperwork just to get her on long waitlists.

    Transportation for non drivers like our daughter can be hard to find although she does have a free county bus that takes her door to door to her workplace. Otherwise, we are her transportation.

    She attends alumni dances and enrichment classes at her old school. She is a very happy and empathetic young woman, warm and quirky and funny, even when she gets into her knock-knock jokes loop!
    She is ALOT of work but so worth it to see her progress and grow.

    We are fortunate to have a strong active parents of special needs group in our county.
    It meets monthly and presents topics/speakers of interest. I can almost always obtain help by posting to the group via its group online.
    I think this thread will serve a similar purpose for those not as fortunate in their lives to have the same.

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  • MillancadMillancad 5917 replies24 threads Senior Member
    I have a cousin who is deaf and has some other issues with attention. She and her (biological) brother were adopted as young children, so none of this came as a surprise to my aunt and uncle. She attends a boarding school for students from the beginning of HS through age 20. For the older students, it encourages independent living. While younger kids live in more typical boarding school dormitories, the older students have suite style apartments where they can start to get a feel for how to manage themselves and their time once they get to the real world. She's super popular at school and I'm always hearing about all the drama in her life.

    Her parents are older than mine (and my father was 45 when I was born!) so the future is obviously filled with questions for them. She has a brother, but he doesn't sign quite fluently. Deafness and hearing loss are not uncommon in my family, so there are some other, more distant relatives who sign fluently, but most of them are older as well. I signed decently when I was a kid and we could communicate pretty well, but I've forgotten so much now.
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  • HImomHImom 35105 replies395 threads Senior Member
    With my friend who has a S with Down's Syndrome, he is doing SO much better than all experts projections, they family is overjoyed. The friend and her S are active in Special Olympics and she started an organization matching special needs kids with "regularly abled" peers that I believe is called "Ducks," because they enjoy water activities among the things they do together, as well as camping and other activities. They also have a soccer team where the "regular" kids coach the special needs folks and everyone makes interesting connections. She has traveled quite a bit with this S, as well as her other two children.

    Her other two kids have both gotten master's degrees in applied psychology from Harvard & Vanderbilt and are hired (when they are in town) to help their older brother, which we feel is a large part of his progress (very motivated to work together).

    On her most recent trip out of the country for about 6 weeks, she had asked her ex if he would help with any of their special needs S's time or care while she had to be away. He said absolutely not, so she worked out a plan with the special needs S & other S, as well as hired someone to come in for a few hours every weekday from lunch + a few more hours to be sure everything was going OK, taught her S to use a debit card and make change with cash, and the other S promised to also check in when he was done with work. It worked extremely well and everyone is so pleased by the growing independence and self efficacy!
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