Parents of disabled kids thread...
dstark
33322 replies919 threads Senior Member
in Parent Cafe
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?
793 replies 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...
My only child is disabled. I'm open about it. My husband and I love our son just the way he is. We are proud of him just the way he is, although it'd be nice if he'd clean his room. We worry about what will happen after we die.
Your mileage may be different.
Hugs to you as you figure this stuff out
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.
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.
I'm not a parent, but I am physically disabled. I know my disabilities are not the same as your daughter's, and I hope you don't mind me sharing my experience. I see how hard it can be on my parents, and I hope you know how wonderful you are for being there for your daughter. From my experiences, a parent's love and support are what got me through my childhood and are still what helps me get through life. Having a parent that goes to bat for you, whether it be with doctors, gov't agencies, etc., is incredibly important. Hopefully you will be able to find a job where your daughter can work 10 hrs/week. I'm sending you my well wishes and support.
If you by any chance live near Palo Alto, CA or Atlanta, GA, please PM me. I virtually volunteer with two disability organizations in those areas that may be able to help you. I am more than willing to get you connected if you happen to be located in either area. Best of luck
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.)
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.
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.
SEE BELOW. Sorry -only part of my post went up and this post should be ignored.
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.
The posts above, though, speak to the creativity families tap to help their young adult fashion a good life for themselves. I especially like the forward thinking of parents who helped set up living arrangements that progressively provided more independence.
A few thoughts: 1) When the rehab counselor felt that 10 hours work was max for your d, was this due to employment factors (not much work available, support needed within the job) or your d's stamina? If your d has the stamina for more than 10 hours of structured employment, has anyone suggested volunteer work and enriching leisure or educational experiences for the remaining time? (What does she like to do?) Many people (speaking broadly of all adults) work part time, but that is not their entire life. They fill the rest of their hours with care of home/family, volunteer work, exercise, and participation in hobbies. My apologies if this is obvious; for my own sibling, without help with this, life would devolve to daily dvd marathons. Sometimes, rounding out life beyond the world of work gets forgotten by professionals who counsel families. 2) May I be so bold as to suggest that (in case you don't yet), you set up a special needs trust for her. 3) While you likely already do this, include her in planning for her life to the extent that she is able, and if appropriate, involve her siblings. Should parents require assistance in their old age or pass away before the person with developmental challenges, the next in the order of command are often the siblings. Or, if they would not be available, who else in the circle of support would be? Hard, hard things to think about.
Friends of mine who work with young adults with developmental disabilities and their families say this can be a very bittersweet time for parents (and sometimes for the young adults, depending upon their level of awareness). There is the same pride (sometimes more!) in seeing the child blossom into adulthood and gain independence as one feels with a typically developing young adult, coupled with a sadness and worry. The independence looks different, and no matter how loved and accepted a child is or how at home the family is with the disability, the difference, the "what might have been," and even grief may reemerge. And sometimes for one parent, but not the other. Just in case anyone in your family has these types of mixed reactions...
Blessings on your journey and apologies for the long post!
PS Feel free to PM if you wish
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.
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.
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.
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.
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?
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.
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.
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!