Parents of disabled kids thread...

<p>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. </p>

<p>SEE BELOW. Sorry -only part of my post went up and this post should be ignored.</p>

<p>dstark- thanks for starting this thread. It is good to read the responses and can be helpful from a lot of perspectives. </p>

<p>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. </p>

<p>Best with your daughter, dstark. </p>

<p>dstark-- Thanks for posting. Sometimes, helping a young adult with an intellectual disability launch into adulthood can make the internecine process of college admissions seem like a cakewalk in comparison! I say this as the sibling and conservator of an adult with multiple conditions, including an intellectual disability. I work within the service system also, and states differ as to how much or any support they provide adults. The state I live in does have services through the lifespan for adults with intellectual challenges, though the quality of these programs varies tremendously. Other states leave everything up to the families.</p>

<p>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. </p>

<p>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. </p>

<p>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...</p>

<p>Blessings on your journey and apologies for the long post!</p>

<p>PS Feel free to PM if you wish</p>

<p>Travelnut, thanks.</p>

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

<p>Eyemamom, thanks for doing what you are doing.</p>

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

<p>My daughter has a good life. She doesnt know what she doesnt know.</p>

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

<p>dstark, my heart goes out to you and to any family worried about a child with disabilities.</p>

<p>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.</p>

<p>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.</p>

<p>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. </p>

<p>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.</p>

<p>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.</p>

<p>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.</p>

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

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

<p>I have never heard of ticket to work. I may look into this. </p>

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

<p>Things are good. </p>

<p>Mamita, I missed your post earlier.</p>

<p>Great post. </p>

<p>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. </p>

<p>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. </p>

<p>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. :)</p>

<p>We have a special needs trust.</p>

<p>Mamita, what is it like to be a sibling and deal with this issue?</p>

<p>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.</p>

<p>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!<br>
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.<br>
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.</p>

<p>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.</p>

<p>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.</p>

<p>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.</p>

<p>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.<br>
I think this thread will serve a similar purpose for those not as fortunate in their lives to have the same.</p>

<p>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.</p>

<p>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.</p>

<p>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.</p>

<p>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). </p>

<p>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!</p>

<p>Two programs that I am familiar with came about from some awesome parents wanting something more for their special daughters, especially as they age out of school programs. </p>

<p>My daughter got involved with this organization during her college years <a href=""&gt;;/a> and still volunteers a few times a year, even though she live a few hours away A true labor of love. I've seen the residential community they built--quite impressive. They now have a greenhouse, where some of the participants grow seedlings, other gardening jobs. A barn with horses, goats, cats. The newly opened Activity Center is a buzz with educational, social and physical activities. And the participants are out and about, enjoying being members of the larger community.</p>

<p>The other program seeks to give vocational/social/educational opportunities along with a small dog rescue. Some of the participants have gotten quite adept at grooming, bathing, socializing the dogs for potential adoption. <a href=""&gt;;/a> (Special Kids/Special Dogs!)</p>

<p>Again, these programs were launched because some very determined parents wanted their kids to have purpose, have a productive, enjoyable life and live in a decent place. I don't have the words to adequately describe how wonderful these programs, participants and parents are. I am in awe.</p>

<p>Gosmom, wonderful programs. The entire field was started by determined parent advocates; I'm only slightly exaggerating! :-) Dstark-- to answer your question about traversing this terrain of supporting / launching a developmentally disabled adult from the sibling perspective, I probably have learned more from my sis than from almost anyone else in the world. Growing up with her has helped me be patient and compassionate, and to view success and achievement through a very relative lens (no pun intended). What has been tricky is that the service system is geared more toward parents than other family members, as are most support groups, so it can be a little lonely in this role... What truly helped? The fact that my parents started planning for her care and communicated their plans, so when they passed away before their time --both had serious, chronic, and life threatening illnesses-- we knew what they wanted, and could merge that with what was available and what we could gauge that sis wanted. The other sibs live far away, so that can be a bit of a struggle, as it is for many with aging parents. The work is not evenly distributed, but then, neither are the rewards. Do you live in CA? If so, there will be some (I think good) changes for people who want more control over their services <a href=""&gt;;/a> </p>

<p>Best to you, and thanks for the thread. It's been great reading.</p>

<p>Another large issue in our daughter's life is her desire to do and be what all her typical peers are when some is just not possible, and will never be. And we grieve still for the daughter we don't have even while we love and support the one we do. We all need to live in reality.</p>

<p>DD seems to have gotten past the idea of attending college as her brother did. It was a topic for years. She asks when she'll take the driving test and get her license (may happen but not likely) She is capable of wanting some things for herself that she can't have. We explain that all people are different and have different strengths and weaknesses, but we've not given her a label for herself to this point. It's something I need to explore with her via her therapist who probably can come up with a way to explain without squashing her hopes and dreams for herself.</p>

<p>She is very interested in dating. This is natural but scary for me. How to let her live and yet keep her safe?
It would be "easier" in some ways if her intellectual challenges were greater and her limitations clearer.
Sorry for the long vent.</p>

<p>"It would be "easier" in some ways if her intellectual challenges were greater and her limitations clearer."</p>

<p>I have always wondered this about my D. She has a syndrome with associated medical conditions and significant dyslexia/reading/language issues. She works so so hard at school and her ECs, and the achievement she gains is so disproportionate to the effort. Her social skills are about 2 years behind and it probably doesn't help that we are a quiet, sedate type of family. At this age, it's also very difficult for her to know she is infertile. She was diagnosed at 9 months and the infertility has always been very difficult for me as well.</p>

<p>She is getting ready to transition out of HS and that is very scary. Picking the "right" college now seems much more challenging than it ever did with S1.</p>

<p>I am always amazed what some parents of special needs have accomplished in our community--adult developmental day programs, special needs camps, etc.</p>

<p>i agree that the "borderline" kids sometimes get a bad break, especially if they are not entitled to any services.</p>

<p>mamita, do you know if sdp will have any effect on traditional regional center services? At one point I'd heard that regional center services in California may no longer be managed through a central agency.</p>

<p>I do not have a child with an intellectual disability but treat several dually diagnosed children and young adults through county mental health. </p>

<p>FWIW, I think it's great to attend at least one local and one national association conference for families of children (including adult children) with the disability (or disabilities) involved. You learn about so many resources, programs, providers, strategies, etc. Of course, tracking disability associations' websites, list servs, and social media also help gobs. I've seen ARC fund families' attendance through grants, if needed, btw.</p>

<p>Lots of great posts.</p>

<p>Musuicmom, your first post...wounds great. Your daughter may be able to work at a wmt type setting. :)</p>

<p>The birth control issue was a big issue for us. Some people told us we should get our daughter fixed. My wife and I could not pull that trigger. My daughter is not dating.</p>

<p>Safety is also a big concern. My daughter is very vulnerable. She likes everybody. </p>

<p>Mamita, best of luck to you and to all the posters and lurkers. I appreciate the views from a sibling because my two oldest kids are going to be there someday.</p>

<p>Dstark, the birth control issue is a priority for our DD now. Her socialization to this point has been in chaperones programs or parent supervised 'dates'. Really boys who are friends. We are very aware that this could change and are walking the line between ensuring she has information and protection without seeming to promote relationships she is not ready to handle. There is an abuse prevention program run by an LCSW here in our town that we hope to connect her with. Although sad that we feel this is necessary for her.</p>

<p>It was only recently that sterilization was suggested to us, her legal guardians. It hit me hard. Maybe because it is such a final step. Maybe because it seems so "one flew over the cuckoo's nest"-ish? Maybe because I couldn't ever have it done without her understanding what was happening and she would be confused about the the college and driving issues, she probably sees herself as a mother someday. There is a planned parenthood in our town that will counsel birth control for DD clients specifically. I'm going to pursue this.</p>

<p>Anyone out there with experience to share on this?
This is hard.</p>

<p>Musicmom, </p>

<p>My daughter is taking birth control pills for acne. She is definitely not having sex. My daughter is very good at repetitive tasks. She takes the pills at the same time every day. </p>

<p>My wife used an iud for 15 years. Why not an iud?</p>

<p>I coach at the big special olympics weekends every year. A dance is part of the weekend. </p>

<p>When I first started many years ago, I was warned that some of the athletes were going to have sex. </p>

<p>I have never seen it. One couple was missing for 20 minutes... But I just dont think they were doing it. </p>

<p>This year, I had my eyes on my daughter and this other girl that was 13 and looks 17 the whole dance. I was tired when the dance was over from watching those two. :) There were guys that went up to the 13 year old during the dance. I had one coach just watch this 13 year old the whole dance so I had 4 eyes on her. </p>

<p>Some of these special needs people are sexual. There is one highly functioning down syndrome couple that is married. </p>

<p>I see them around town once in awhile. The woman works, I dont know, 32 hours a week at Safeway... A grocery store.</p>