<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=“Hannah and Friends - Awareness & Compassion”>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=“Our Program – Jessicas Haven and Rescue”>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! 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>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>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>
<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!
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>OP - if you happen to live in the So Cal area, contact Dayle McIntosh Disability Resource Centers - they are an amazing resource. If you don’t live in So Cal, call them anyway and see if they can provide a referral for an organization like them.</p>
<p>I am watching an older couple we are acquainted with go through this. Their S is in his early 60’s. I think he has lived with them most of his life. They have traveled and lived abroad with him. I don’t know his intelligence level but he is physically able but does not speak. I think he might be autistic.He goes each day to a day program but is not able to work. He likes routine and loves the ocean. His parents started transitioning him to a small group home this past spring. Their other S has helped them with this. The home is 4 men of varying function. Each has his own room and they have staff who are there for most of the day but does not live with them. They do their own cooking and laundry and cleaning with assistance. They mentioned they have had him on a waiting list for this type of group home for several years in anticipation that they know they are not going to live forever. The biggest adjustment has been that he now goes on his beach walk most days of the week at a different beach. </p>
<p>I admire this couple. They live life to the fullest and have not let their S miss out.</p>
<p>We have a 31 year old son with significant physical and mental disabilities. As you mentioned trying to figure out what will happen after we are gone is worrisome. We also have a 16 year daughter and while I hope that she will watch over him I didn’t want her life to become about being his caregiver. For the first 25 years or so it never even crossed my mind that he wouldn’t live with us until either he or we died. We loved him to the moon and back and no one else would take as good of care of him as we had. Then one day I started thinking about what would happen if we were the first to go. I pictured him as a 50 year old suddenly finding himself alone and scared in a large institution. It broke my heart to imagine it. We decided that we wanted to have him settled somewhere with his own life so that he wouldn’t have to adjust to his surroundings as well as adjust to the loss of his parents all at the same time. </p>
<p>David has support services through a medicaid waiver. When he was 26 years old we moved him into a rental home with a roommate who also had disabilities and they had 24 hour staff through a local agency. The first week was so hard. I worried he would think we abandoned him and I don’t think I have ever cried that hard before or since. But the truth of the matter is that he was more ready for the move than we were. 26 years of your parents telling you every move to make is a long time </p>
<p>He LOVED his new house. He adjusted quickly and he loved the attention of all the staff.He didn’t want to come home for visits initially because he was afraid the good times were going to come to an end. It has been amazing to watch the progress he has made now that his parents aren’t doing everything for him. Time has passed and during the interim he met a girl at the sheltered workshop where he works. They became inseparable. Two peas in a pod. They adore one another. They do everything together. Their love is the purest form of innocence. While we zone out after the third or fourth time he says something he thinks is funny she laughs the 50th time as hard as she did the first They love playing Wii together in the evenings. She is a mother hen and she makes sure he eats.</p>
<p>We approached her parents about her moving in. They agreed and we moved them to a 3 bedroom rental. Having a close relationship with her parents has helped us tremendously. For the first time we have company on this journey through life. When we are struggling they pull us forward. When they are struggling we take the lead and pull them forward. This set up has benefited both kids and both families.</p>
<p>They have a busy life. We practically have to make an appointment to see them because their days are so full. They are in special Olympics and they bowl…learn basketball skills and learn track and softball skills. They go to a social club on Mondays for people with disabilities. They go to the movies and out to eat with friends. My 16 year complains they have a better social life than she does They are happy and healthy.</p>
<p>It has not been without its struggles. We have been very involved with the planning of his care. Those in the agency who have no active and engaged family members definitely do not have the same quality of life. It requires effort on our part and hopefully if something happens to us family will step in and oversee. We have had to weed out unsavory staff but it can be done. He has caregivers who love him like their own and they have become our family members. He is happy and loves his house. That is one less worry on my mind.</p>
<p>Good luck with your daughter and your decisions. Don’t let anyone tell you that if she moves out you don’t love her enough or feel selfish for wanting a life for yourselves. David’s move was a positive change for him…our daughter…and my husband and and I.</p>
<p>I want to thank the OP for starting this thread. My 22 year old’s disability is mental illness - I have written about him pretty often on CC. His IQ was measured recently as 100. I was shocked, because he has always been smart as a whip. He is a senior college student, majoring in applied math. The psychologist said the IQ score result was due to his processing speed, which is at the 5% level. It is heartbreaking to have a bright kid, who read Harry Poter in first grade, take MONTHS to read any kind of book. He lives with us and has never held a job. I have been his case manager for about 3 1/2 years. He qualified for SSI and our state medical insurance - I have spent many, many hours on the phone and internet getting him the help he needs. We just found a real case manager for him, and she seems good. At this point, it’s hard to picture him getting a job. He has symptoms almost constantly. Our friends and acquaintances who have placed their loved ones in group homes up here are not happy with the care they are receiving.</p>
<p>For now, we are taking it one day at a time. He has an excellent psychiatrist and counselor, who communicate with me by email and phone quite often. He is volunteering at a local food pantry. He has also started working with horses (equine therapy) - the therapist teaches him about horses and relates the lessons to getting along with people, too! I keep praying they will come up with a more effective anti-psychotic drug. The ones he’s tried to date haven’t worked too well.</p>
<p>Debi, I love your post. I am not going to let people who are clueless tell me what Is right and wrong. I am very happy to see that things are working out for your family. </p>
<p>My kid is 22 and very innocent. We go to a restaurant. The 20 year old waitresses give my daughter the child’s menu. The waitresses think she is 12. :)</p>
<p>Some day my daughter isnt going to live with us. I know it is going to be very hard…for my wife and me. Right now… I like how things are going. </p>
<p>We are all doing the best we can here. I wish you and your family the best. </p>
<p>MaineLonghorn, I hope that something is found for your son that works. Soon. The best to you and your family too.</p>
<p>You and your wife will know when the time is right. Initially my husband and I weren’t on the same page. But after talking to a counselor she helped me to see that I wasn’t being a bad mom or a selfish person for wanting to move him forward with his life. In turn I was able to get my husband to see things from a different vantage point.</p>
<p>Don’t be surprised if family members fight you. No one thought we should do it. But I knew that it was necessary for him as well as us. The timing was perfect. Our daughter has benefited as a person from having a sibling with disabilities but she has also sacrificed a lot as well. Our son is both physically and mentally disabled and accessibility as well as other things always had to be considered when doing things as a family. Some people won’t understand this when I say it but it is my experience that while our son is a blessing like no other when he came into our lives we became a family with disabilities not just one person with disabilities. </p>
<p>When he moved out on his own she was just hitting middle school. He LOVES his life and while he is living it to his fullest we were and continue to be able to spend some quality time with her. I also got to be his “mom” again after years of being physical therapist/speech therapist/nurse/teacher/dietician etc. It feels good to be mom again :-)</p>
<p>This arrangement is not without its challenges. I just had to attend a meeting with the top brass of his agency to try and make sure that the things we have put into place for him remain quality services. But for the most part with hard work and persistence it can be accomplished.</p>
<p>I remember the day I was told he had bleeding on the brain. I thought he would never have a life of his own. I never imagined him having a home…a girlfriend…friends…a social life. He now has all those things and for me I have some peace knowing that when I am gone it will not be such a shock.</p>
<p>Good luck with your daughter. Enjoy her and when the time is right do what your instincts tell you to do even if no one else understands!</p>
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=“
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>