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Post by Jackie on Feb 21, 2006 7:46:07 GMT -5
AMANDA...as you surely know, once our kids with DS are 18... if we have not declared legal guardianship, then they are in charge of their own lives just like you and me.
That means they are free to marry and have children.
I am sure there are some adults with DS who are headstrong and go off and make decisions their parents would disagree with. That is why most of us are advised to consider the guardianship issue early on if we think our kids might fit into this category. I have heard it is much harder and pretty demeaning to have to go to court with a disabled adult later in life and declare them incompetent.
In our case...knock on wood...Emily is pretty level headed and would most likely come to us for advice before any of these situations arose. Therefore we chose NOT to declare guardianship. She met with our lawyer and signed papers allowing us to make legal decisions for her if she is not able to regarding her health care.
One thing many schools are now doing in terms of future "parenting" is having students carry around the Baby Think it Over computerized baby doll for 48 hours.
I just remember in HS that before Emily did this, she filled out a form stating she expected to have 4 kids (same number as I have)...and when she finished the grueling 2 days which were pretty much sleepless for her...she said she wanted 0 kids!!! She still maintains she wants none of her own to this day.
I don't know if you ever watched the family tv show...Life Goes On...but in the second season (I think it was 2nd) there was an excellent two parter where Corky the son with DS wants to run away and get married. The show actually had real life interviews with about six couples who had developmental disabilites about their complex relationships. It was very good and I hope someday its re released.
I think you will find that when interviewing parents of younger kids with DS...marriage is a BIG dream...and when you interview those of us who are now "there" you will find that we are pretty realistic about where are kids are in life and not as excited at the prospect of it. When Emily was in HS I actually bought her a Brides magazine to look at...LOL. Now I am happy when she just buys Cat Fancier... ;D
But the answer to your question is...YES ...our kids CAN marry and without our permission if we don't have guardianship. If Emily were to marry....I would do everything in my power to talk her into having her tubes tied however.
Jackie mom to Emily 25
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Post by momofrussell on Feb 21, 2006 9:37:25 GMT -5
if we have not declared legal guardianship, then they are in charge of their own lives just like you and me.
So.. how do you go about doing this? Anyone know? Does a child have to be deemed at some diminished cognitive level or something to do this? (if I even said that right? LOL)
A.
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Post by rickismom on Feb 21, 2006 12:25:21 GMT -5
try Downs Ed- they have a series coming out on adults-- you could even email them and ask for sources www.down-syndrome.info/library/periodicals/dsrp/04/3/096/www.down-syndrome.info/library/ periodicals/dsrp/03/2/065/DSRP-03-2-065-EN-GB.pdf www.down-syndrome.info/library/periodicals/dsrp/05/1/039/DSRP-05-1-039-EN-GB.htmwww.down-syndrome.info/library/periodicals/dsrp/02/1/019/DSRP-02-1-019-EN-GB.htmThese are specific articles on DS and marriage. A very interesting book about a young lady with "retardation" (not DS) who moved out of her house because she wanted to be with her boyfriend is: "Retarded Isn't Stupid, Mom" by Sandra Kaufman
published by BROOKES ( www.brookespublishing.com ) (Brookes has a lot of good stuff...)
This book is the story of a mother and her retarded (not DS) daughter. (Sorry for the R-word-- they use it in the title.....) The book at first was a bit scarey--the mom had a lot of behavior problems with her daughter, and then when 22 Nicole (her daughter) moved out on her own. Most of the book is about this young lady's striving for independence, financial security, and a social community. (I do not agree with all the things the daughter does. such as living with boyfriends before marriage, but that is due to my own value system. I just had to add this.) The book is a lot about the mother's fears vrs. her daughter's insistance on what she wants. In the end, the family does help the daughter quite a bit. But what is amazing is how independent, and "knows what she wants" this daughter (who doesn't know how to read) is. The book also touches on the obstacles society makes for the handicapped who do want to work. I personally am not ruling out the possibility of my daughter marrying. However, I don't think she is capable of raising a child, and having a child to see it TAKEN from her would be heart-breaking.
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Post by wrblack on Feb 21, 2006 13:53:53 GMT -5
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Post by Kristen on Feb 21, 2006 15:07:15 GMT -5
Am I the only one out here who has no problem with it is Carter wants to get married? He is most likely sterile, so that is not really an issue, but if he wants to get married and such, I am no one to deny him that. I understand it is a FAMILY marraige moreso than any other because of the support involved, but I'll be d**ned if I bust my hump teaching him and helping him and saying he is more aloike than not only to turn around and say no, Carter, you can't get married because you have Down Syndrome. It would be many interesting discussions with he, the girl and her family, ensuring intentions are on track and lots of teaching about responsibilities and a lot of involvement I am sure, but to flat out say no? Wouldn't that make me a hypocrite.
I am not trying to make jest, but seriously, I know many people who have no business being married and the ink was barely dry on the marraige license when the divorce papers were filed. They are into their parents for money and support, they have children that they take care of poorly, there is abuse (substance, physical, verbal), neglect and the whole nine going on. Does anyone tell them no, you can't do this again, you are not capable of having a marraige when they very clearly are not? No and they have proven they are miserable at it.
Bottom line: If Carter is dating a girl, it gets serious and he approaches me saying he wants to get married, I am hearing him out. Then the talks about finances, jobs, responsibility, communication and a whole slew of other topics begin - marriage might not be the right answer, but all options and consequences will be discussed. I am teaching him the best I can, helping him in any reasonable way possible and having my first dance with him if it comes to fruition. I better be willing to step up and practice what I preach - that his life is as worthy and full of possibilites as anyone's.
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Post by andrewsmom on Feb 21, 2006 20:28:53 GMT -5
Hmmm Kristen. I wrote a reply to this earlier today but decided not to post it. I don't know how old your son is but Andrew is not even 2 yet. I have the same view as you do on this. How can I keep telling him his whole life..."you can do anything you want" and then not let him choose his own road...wife or no wife. I just don't think I could stand in his way. I also agree I have seen couples who have no special needs who were also divorced and spoke bitterly about each other to friends, or (in one particular case) got seperated (and later divorced) after 2 months of marriage because she couldn't stand him snoring and he couldn't stand how long she took in the shower. Reading all the negative replies to this post upset me because I am trying so hard to help Andrew reach his full potential....and this was just kind of a kick in the butt. I know these were just personal opinions but it still stings.
But on the flip side....Andrew is still very young and could have problems later on being on his own, despite my best efforts early on to teach him how to be independent. I also don't know how I feel about him wanting to have a child... but again, he is still so young...who knows? But I sure don't want to jump to any judgement right now. I will let him decide when he gets to that point in his life, and just like all my other children... I will be 100% there to support him...no matter what. -Trisha
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Post by CC on Feb 21, 2006 23:28:43 GMT -5
K, earlier I posted a link that I thought might help AMANDA, I know its kind of long BUT hope you all get a chance to read. I found it very interesting. Anywho I have not posted my thoughts here as a parent of one with DS but thought I would now. I personally have no problem if Chris one days wants to get married or finds someone he thinks he wants to be a life long partner with or even a partner that may or may not turn out to be life long. If he turns out to be able to take this on and in need of support for sure he GETS that support from us For myself and this is just me I am talking bout, marriage vs having a baby and taking on and providing for another life is two completely different things. NOOOO way sorry but NOOO way in my thoughts would it be a good thing for one with DS to have a baby, support or not, just seems like a bad idea to me. Having a baby is a hard job in itself and not for nothing BUT I have always wondered why the hardest job in the world, one needs no prior education for, KWIM?? We go to school to learn soo much to become this or that but having a baby seems to be a learn as you go thing Chris is only 13 and continues to surprise me daily BUT the reality is he will make the BEST of the BESTEST uncles one day i am sure, Dad NO, husband maybe. I am blessed and have one of the BESTEST of hubby's I could wish for and maybe Chris would be the same for another who knows. I think as the link I posted pointed out,Marriage/Partner, we need to consider this may be a option for our kids one day and help them NOW to learn and understand what that may entail. As with anything else ALL our kids are different and for me this is not a black and white situation, KWIM I would never say NO they can not but I sure as heck would never say YES just because they want to. Chris at 13 wants to NOT go to school but he has to and does, Chris at 13 thinks Ice Cream is the main food group, Sorry its not and he has to learn that. So I say each one of our children will go down different paths and what might work for one may not for another BUT in the end what matters is what works and is best K, just my late night ramblings LOL CC ~
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Post by kellyds on Feb 22, 2006 5:50:39 GMT -5
My husbanad and I wouldn't have a problem with it at all. Whether due to serious illness, a disabling injury or Down syndrome . . . if ANY of our children end up needing assistance with their activities of daily living or with raising their own children, we'll be there. We wouldn't enable a child who was capable, but we'll go "all out" to assist one who really needs the assistance.
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Post by Jackie on Feb 22, 2006 8:50:08 GMT -5
Good post CC
I think all these posts are good and show people are thinkng ahead.
I say...keep dreaming and...dream BIG. Look where we all are now in comparison to the days of institutions! And all because people had ...dreams.
And...when the time comes....if it does...you will learn the fine art of..."dream redefinition"...and discover that life continues to go on.
Being a bit further down the road than most, it's heartening to look back and see all the wonderful things that will be happening in the future for our kids...and to think that I know the people who will be making it all happen.
Jackie mom to Emily 25
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Post by Kristen on Feb 22, 2006 13:49:24 GMT -5
"Dream redefinaiton" is something I am already familiar with. Do you think when I wanted a family I said and hey, I sure hope it's a child with DS! Heck no! My dream was a boy a year or so older than a girl, I would stay home with them and we would bake cookies and life would be fabulous. That dream has happened. The specifics are not what I assumed they would be, but isn't that a life lesson in taking things for granted? My own dreams have been redefined again and again as I grow and change. I find myself doing things I never imagined - getting a second degree, catching throwup in my hand without so much as wincing (from the dog no less), not caring if I get new stuff as long as the kids have five times more than they want/need...That is life. My "dream" for Carter is a life well lived. I am not insistant that he have a job and move out and get married. I am not in this to put unrealistic expectations on him to bolster my own ego. I am in this to say that the opportunoities afforded to disabled people are far greater than they were in the past and we can only imagine what the future holds. This is the first generation being raised with regular therapies, early intervention and the idea that yes they CAN - let's wait and see how it turns out before dusting off the same old stereotypes and slapping on the labels. My life will not cease if Carter's potential turns out to be more limited than is currently indicated, but it will definately take a big pause and I will have to reassess myself if I don't continue to live now like everything is a possibility. If I don't believe that it is, I am drawing a line for him and putting arbitraty limitations on him. If a school tried to do that we would all be squaking about it, so why would I do that to him as his own mother?
Trisha - Carter is 3. He will be 4 in June and he is knocking their socks off in preschool!
Jackie - I am trying not to take it as such, but I find you to be somewhat condescending with this whole "life will continue to go on" bit. You have no idea what any one of us here have experienced, related to our kids with DS or not. Just becaseu you have us in age doesn't necessarily mean you have us in wisdom.
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Post by Debbie on Feb 22, 2006 16:26:00 GMT -5
After reading all the messages I just knew I had to respond to this.
Amanda,
I want to give a personal opinion on this to you. I seriously doubt it will help you on your research but here it is. I have Down syndrome. I have Mosaic Down syndrome. I am forty four. I am in a long term romantic relationship for some time now. I used to have those romantic, idealistic, dream of getting married and for some time we did talk about it but in the long term, and being the kind of person I am now, I knew it was not possible. To be totally honest, I just don't want to marry him. I love him but I knew down deep in my heart, it was not something I could do. I am not saying I couldn't have married him if I had wanted to. I never wanted to have children either. My sister has had enough in our family!
I think a man or woman who has Down syndrome can marry but I think it comes down to where they are at in their lives. Once they have been working for some time and learned the skills that are needed yes, I think it could happen. Like one person said, the support behind them is very important. It depends on what kind of support they have behind them. I know of a lady that married and had a child. She had to go to court to prove she could be a parent. Yes, she had Down syndrome. Her husband didn't. She won! I am sorry I don't have the resource for you on that. She lived in New York City I think. This was a long, long, time ago.
By the way, I am my own legal guardian. I can make my own decision's but on the big ones I always ask advise from my parents or anyone I know well.
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Post by chasemansmom on Feb 22, 2006 16:30:35 GMT -5
I hope those of you who read my post did not read it wrong. I never said I would not let Chase get married. I have always dreamed that for him and when he was younger thought it a real possibility. As he gets older I question whether it will be a reality ....as the older he gets, as with people with DS, the more noticeable the impairment gets, not just with Chase but with all people with trisomy 21. Ad I dont think Jackie was trying to be condesending at all, she is simply saying she too has had those same dreams we all have and have had for her daughter and she has found it probably wont happen. Chase is 13 so he is older but Kristen, he is not so old that I have forgotten being in your shoes with the same hopes and dreams as you. I still have them for Chase, it is just now that he is a teen and I see where he is, as Jackie sees where her daughter is now that she is in her 20's... I know all my hopes wont come true for him. But it is okay because all that matters to me is knowing Chase is happy and that I have given my all to make him the best Chase he can possibly be and have given him all the help and chances and choices he needs to get where he wants to be. I was afraid to post to this thread in the very beginning because of this very thing happening, people take offense at what others say. Lets not do that here this time..lets just all agree it is okay to voice your thoughts on your child and not feel attacked by others okay ...please? Amanda.....btw, here in Michigan if your child reaches the age of 18 and you feel they need a partial or complete guardian, you must petition the court (big bucks) and then have an evaluation done by a pych and they then schedule a hearing where you and your child meet with the judge who asks for your childs imput as well as your s and renders a decision in two weeks. In Michigan the big push is to only have a partial guardian so our children still have lots of rights. As for Chase at this time my only wish is to be his medical guardian when he comes of age. Robin
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Post by Jessie on Feb 22, 2006 16:45:20 GMT -5
I wasn't going to post to this since I have never even considered the idea that Jason would ever get married - and the chances of him fathering a child is pretty much slim to none, but it's such an important topic to discuss that I of course wanted to throw my 2 cents in. This has been such a thought-provoking post - and Debbie - I always love to hear your perspective on things. Kristen, when I first read the responses I kind of felt the same way that you did - not that anyone was being negative - just that it's somewhat of a contradiction that we all talk about making sure our kids are included in everything "normal" and have the same opportunities as other kids yet the general consensus is to not encourage them to marry. So, I get where you are coming from. Like CC said, it is again one of those individual decisions because all of our kids will grow up with different levels of achievement and understanding. I guess that's why I have never considered that Jason will marry. I'm not throwing in the towel on him as far as developing more, but realistically, there are things he is just never going to do . . . probably. But, we will certainly keep the door open to whatever awaits us and Jason . . . he could surprise us all. I guess we just need to see what happens and what the circumstances are at the time, and if that time ever arrives we will deal with it then. Jessie
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Post by Debbie on Feb 22, 2006 16:53:31 GMT -5
Robin,
I agree with you. I have know Jackie for a very long time since we both live in the same town and she has been through alot and knows a thing or two! She is a person who has done what needed to be done and even some more! She has done much for Emily to make sure she had all the opportunities as her peer's. She has really been there for her.
I have never known her to be condescending.
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Post by rickismom on Feb 22, 2006 17:36:38 GMT -5
Why in the world did anyone think I was against marriage for our adults with Ds. However, it has to be done thoughtfully. By the way Brookes has a book about teaching adults with problems to care for kids. I am buying it. I want to teach Rina these things, if not for her own kids, for her neices. see: www.brookespublishing.com/store/books/tymchuk-8175/index.htm By the way, I used to live (rent a room) by a couple who where mentally impaired (not DS, but similar). The mom and one married brother lived each about a five minute walk away. This couple were HAPPY together. But they didn't have kids.
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