Parents of disabled kids thread...

<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=“http://www.hannahandfriends.org/index.php”>http://www.hannahandfriends.org/index.php</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=“http://jessicashaven.com/our-program/”>http://jessicashaven.com/our-program/</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! :slight_smile: 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=“http://www.dds.ca.gov/SDP/SDPFAQ.cfm”>http://www.dds.ca.gov/SDP/SDPFAQ.cfm</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.
Sigh.
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 why…like 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. :slight_smile: 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>

<p>Dstark, yes, will look at other options, including IUD. Our DD is also great at repetitive tasks.
She takes a two prescription meds and several vitamins each am. She helps herself from each bottle then shows us before swallowing;she’s never made a mistake but we feel better still checking! :slight_smile:
I’d rather not add bc pills if another option will work. We’ll see.</p>

<p>I like your posts. You are obviously very involved in your daughters activities. In our area, moms kinda run the activities/committees in our school district but more dads are involved in their special needs kids’ school and post school activities. I think it’s a great thing. So much to do for our kids even while helping them do for themselves.</p>

<p>My dad’s brother was robbed of oxygen at birth and the result was a disability that affected intelligence and speech. His body was strong, so he was able to work (custodian). My dad and his brothers “took care of him” after the parents died. He was able to live alone (parents’ home) until he died. However, my dad handled all of his finances, made sure his bills got paid, etc, helped him invest his savings, etc. My uncle was never on any public assistance because he was able to work full-time and even get a nice pension (county job).</p>

<p>I dont know how your other children feel about being watchful of their sister after you pass. You are such an amazing investor that likely you could set something up financially so it wont be a financial burden to her siblings…and even provide some kind of compensation for their efforts. (my dad and brothers didnt take any compensation and happily delayed getting the money from their parents’ home until after their brother died.)</p>

<p>I think families need to pull together in situations like this. One of my sisters has had a serious chronic illness since she was 9. My siblings and I are so aware that anyone of us could have been similarly afflicted that we want to help her whenever we can (one sibling donated a kidney). If she ever needed daily care, we would provide that. That isnt just “talk”, we did that with each of our parents. </p>

<p>Mom2collegekids, I like how your family pulled together and I hope mine does the same. </p>