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Post by amanda on Feb 20, 2006 16:01:07 GMT -5
I am doing some research in law school about the capacity of folks with Down Syndrome to marry and have children. I suspect that there have probably been many instances where the capacity to participate in these life activities has become a legal question because someone has contested it. Does anyone know of any resources that might help me? I can't find one, but are there any websites specifically devoted to issues affecting adults with Down Syndrome? Please contact me by email if you have any suggestions. I would also love to know your personal anecdotes, if you wouldn't mind me incorporating them into my research. Thanks.
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Post by amanda on Feb 20, 2006 16:13:32 GMT -5
By the way, I have no personal experience with Down Syndrome and no preconceived notions about the abilities and capacities of people with the syndrome. I hope the above post does not give the impression that I have a point of view on the matter. Also, I just realized that my email address isn't posted - please feel free to respond in-thread. Thanks again.
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Post by ValerieC on Feb 20, 2006 16:19:58 GMT -5
I have a 2 year old with Down syndrome and so don't have any personal experiences with adult situations.
What do you mean by personal anecdotes?
Valerie C
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Post by amanda on Feb 20, 2006 16:26:18 GMT -5
What do you mean by personal anecdotes? Personal stories relating to the topic. For example, if you know or are related to someone with Down Syndrome who has married or had children. |
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Post by chasemansmom on Feb 20, 2006 16:46:45 GMT -5
We have had this discussion in the past, I think a couple years ago and it wasnt good then and I fear it wont be good now. But seeing as I feel so very strongly on this subject, I am going to respond to you with MY opinions and if any one feels insulted please dont, this is simply my humble opinions.
You dont know me Amanda so i will tell you I have four sons, number three has DS and he will be fourteen in July. He already has his wife picked out, LOL, her name is Emily and she is beautiful, she also has DS. Will they really get married? Who knows, in my dreams it happens. Will they have kids? Not if I have anything to say about it.
I also work in special education in a program for young adults with disabilities, ages 17 to 26. Here in Michigan they can attend school until 26. I am wondering why you have limited yourself to just DS and not simply people with cognitive impairments? I have personally been to court three times because my students have had babies and had to have them removed due to neglect and abuse. Each year of the eight to ten students who have babies, maybe one or two manage to be able to care for them and keep them, but only with lots of family supports. I do not think it is fair to bring babies that have no one able to appropriately care for them into the world. I dont know if you realize people with DS are very different from one another and have many different levels of abilities...but at my school (and I have worked there for more then ten years) there has never been a young adult with DS that would have been able to care for a child. We have a child care class also and give the students the dolls with the computer chip in it to care for and not one of them have managed to pass with a live baby when they finally return the dolls, all of them would have been injured, neglected or fatally harmed, that to me says a GREAT deal. Do I think it is fair our sweet children arent able to properly care for a baby, no way. Do I wish Chase could be a father or give me a grandchild, of course, but life isnt fair, simple as that. I know many people may disagree with me and that is okay, just dont yell at me for my honest opinion, it is how I feel, having watched so many babies being born and taken away or abused. Might I add, I was there for one of those babies being born, I cut his cord....cared for him but his mom could not do it alone and watching him being abused and negleted and taken away was more then I could take, I never want to see another baby have to endure that.
Thanks for listening and not judging my feelings,
Robin
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Post by Jackie on Feb 20, 2006 16:57:55 GMT -5
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Post by Chris on Feb 20, 2006 17:29:20 GMT -5
A woman with Down syndrome has a fifty percent chance of having a child with Down syndrome. A baby with Down syndrome has a thirty to fifty percent chance of having a heart defect. My daughter had a serious heart defect and it was almost too much for me to keep up with her medications, feeding tube, tracking how much she ate, fighting insurance companies, etc. I don't see how a very high functioning woman with Down syndrome could possibly be an adequate parent for a child like mine.
I can see an adult with Down syndrome possibly marrying although they would need a very strong support network. As a parent, I would worry about the legal ramifications of marriage. I certainly would like to have the legal ability to make medical decisions for her and be able to look out for her welfare. I think the Terri Schaivo situation has opened the eyes of many parents of children with disabilities.
Although, I don't personally know any married couples with Down syndrome, I do know they exist. Jackie gave you some excellent links.
Chris
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Post by Jackie on Feb 20, 2006 18:00:22 GMT -5
Robin...I think that is an excellent post. I used to know a psychologist here that studied for years children born to people with cognitive disabilities. And her reports are just as you have stated...not a good thing.
I watch my own daughter who is capable of "nannying" her neice and nephew...but only because there is help for her to do that....I would never want or let her stay alone for a long time with a newborn.
And, interestingly, she doesn't want to have her own children either.
Even the "marriage" part makes me uneasy. Marriage is just not event to go thru...parties, presents,fun and games. It's like a full time job to make it work and requires good judgement and quite a bit of dedication.
I think most of us would like to "dream" that our kids will be able to do this...but the reality of it all is that very few will.
I know for years I thought possibly Emily would marry...she had a boyfriend who was quite capable...non ds but disabled. He drives a car and has had several jobs. But...now that she is at the age it's reasonable to think of it...I really hope she doesn't ever want to.
That doesn't mean she cant have relationships. And at this point thats about all she wants. The boy I mentioned above (not boy...man) scared her once by suggesting they go look at rings. I found her crying in her room after coming home after a date ...saying..."I am just not ready for this". Soon after that they parted ways but have remained friends.
Nothing wrong with talking about it as if it might be a possibilty,however. It's what most young adults do.
I have a friend who has a daughter with DS who DID marry...a young man without DS. Sort of a fairy tale event. It was in the paper ...the stories about how all the social workers made it happen...the dress ...the ceremony ..etc. But several years later came to sad end because the man was abusing her.
I hope I don't put dampers on others by posting this...but its reality...and while our kids are capable of many things ...I believe very few really can ever handle the responsibilitiies of an actual marriage.
And as Robin said about her post...these are just MY feelings.
Jackie mom to Emily 25 in Texas
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Post by amanda on Feb 20, 2006 19:35:04 GMT -5
Thanks so much for all of your thoughtful responses and for the links, which are great. I appreciate hearing the viewpoints of parents of children with DS. For those parents who do not believe your children are capable of adequately parenting children, what would you do if your child expressed an interest in becoming pregnant, decided to become pregnant, or became pregnant by mistake? I have the same question for parents who do believe your DS child has the capacity to marry. These are probably difficult scenarios to think about having to be in, but would you ever consider taking legal action to prevent the marriage, or to get custody of your grandchild? Do you think there should be an individualized capacity determination per DS person, that can be appealed? Or do you think that we should (legally) assume that someone with DS has the capacity to marry and raise children, and that if the parent (who obviously usually knows the child best) objects, only then should there be a legal determination of their abilities? Do you think that's too great a burden on the parents (since it can put the parent in an adversarial position with the child)?
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Post by amanda on Feb 20, 2006 19:36:31 GMT -5
Oops, I meant "parents who DON'T believe your DS child has the capacity to marry"
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Post by chasemansmom on Feb 20, 2006 19:47:42 GMT -5
Jackie...i too know of a couple, he DS, her cognitively impaired who were married. But this marriage had a bit of a twist. Seeing as neither set of parents were wiling to give up the partial custody they had over their children or control of their childrens money, it was simply a church wedding but neither of my students knew it wasnt legal thru the state and never did find out.....however after five years, they also parted ways or got a divorce as they thought of it. Neither one of them could take total care of themselves and required lots of help with household chores, cooking cleaning, laundry, grooming, hygiene, etc. it was all fun and games at first, they had a cinderella wedding with ALL the trimmings, her parents went sooooo into debt for this wedding as she was their only daughter and it had been mom's dream to have the best for her daughter. To make a long very sad story shorter....parents began fighting over incomes, bills, how money should be spent, whose turn it was to help them, who to hire to help them, whether CMH or the ARC or social serices should be the ones to do it. The "bride and groom" began to fight over what to eat, when to go out, wher to go out, what to watch on TV, who could be on the phone and for how long, fighting over their computer, their friends, lets be totally honest here, lots of people with impairments are .....how do I say selfish without sounding wrong? It is all about them, they may be kind and gentle and generous and willing to share but when it comes down to it, it is all about themself in the long run. It was disasterous. So this wonderful sweet couple who had dated for about nine years before they and their parents decided it would be so cool for this disabled couple to take the so called plunge and had been so happy came to an abrupt painful halt and they are no longer friends and talk bitterly about one another to their mutual friends. Soooo noooooo, it is a wonderful dream but not really a realty. However no one get me wrong, Chase is engaged to his sweet Emily, LOL so keep all the guys away, this may be the logest engagement in the history of the US...  ;D You got to see them together to understand it and for those of you who will be in Pittsburg, get ready to have Chase and Emily take your breath away, they are so sweet and huggsy with one another, melts my heart every time   :-*I see them together. Dreams are a good thing, they can last a lifetime and it is okay for us to dream and dream and dream. hugs to everyone, Robin |
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Post by amanda on Feb 20, 2006 19:58:52 GMT -5
Another question (and I one I can research myself but haven't yet): Is there a legal determination of capacity if the parent wants to maintain guardianship after the DS child reaches age 18? And if the parent does continue to be a guardian of the adult child, does that give the parents a say in the child's reproductive rights and right to marry? Although I can find out the law/process on this, these personal accounts give it a much more "real" perspective.
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Post by wrblack on Feb 20, 2006 20:06:36 GMT -5
Well, I worry more about testicular cancer than paternity and parental rights. Don't have much to contribute to this discussion, but just a quick clip and link from Dr. Leshin's site. from www.ds-health.com/faq.htm<< Q: Are adults with Down Syndrome sterile? A: Women with DS are fertile. Men with DS have traditionally been considered sterile; however, there have been two documented cases of adult men with DS fathering children. >> www.ds-health.com/issues.htmTrisomy 21 seems to offer a good deal of protection against many forms of cancer, except leukemia. Males with Down syndrome often have undescended testes, surgically correctable, but doesn't decrease risk of testicular cancer. So, does the Down syndrome offset the increase risk of testicular cancer or not? Maybe I should go ask Dr. Len. -- Bob |
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Post by CC on Feb 20, 2006 22:55:21 GMT -5
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Post by amanda on Feb 21, 2006 7:09:58 GMT -5
Thanks, CC, that looks like a great resource.
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;D You got to see them together to understand it and for those of you who will be in Pittsburg, get ready to have Chase and Emily take your breath away, they are so sweet and huggsy with one another, melts my heart every time 
:-*I see them together. Dreams are a good thing, they can last a lifetime and it is okay for us to dream and dream and dream.