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Post by Jackie on Feb 22, 2006 18:44:27 GMT -5
Thanks everyone...as most of you know I disappear during online angst. I have tried from the very beginning of my time on UNO to post from my personal experience and share the ups and downs of what has happened in Emily's life. I have attempted to join in with humorous antedotes and real life stories instead of giving any direct advice about how to do anything. I think it is far better for each of us to come to our OWN conclusions on issues...but fine to look at the experience of others to do it. I HAVE shared advice with some privately in chats or emails...but hopefully only when asked to do so . SUSAN may be the exception...LOL...one of these days she is going to say to me...."back off....MOM! ;D I certainly don't have all the answers...don't know anyone who does. I have NOT walked in anyone else's shoes...nor has any one else walked in MINE. So...if I have offended anyone with my candor...I humbly apologize. And remember...this thread was started by Amanda to find out some issues about marriage...its not really about any one of us. Emily has left Kenny and Elvis behind here...and has met no one of the opposite sex yet in Austin...so this topic really doesn't pertain to me at the moment, anyhow. I think Debbie had some excellent things to say...remember SHE IS a person with DS...and I think we all DO have much to learn from her. Jackie mom to Emily 25
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Post by Cathy on Feb 22, 2006 22:39:23 GMT -5
I was NOT going to touch this topic with a 200 foot pole. I just said this to Jiminey, however... although I will not express my opinion on this subject, I have to say the following:
Debbie: You are AWESOME! I love to hear things from your side of the fence. You give me such hope and such inspiration. God Bless You!
Robin: I am WAYYYYYYYYYYY proud of you. I totally know where you are coming from and I think it was well said!
Jackie: I ABSOLUTELY love your postings. You have been to a place where I am just now entering (Katie is 5). I look at the way you handled things with Emily and how wonderful she is doing and I think.. "you know, Katie can be just as successful".
I am not a point in my life or Katie's where I want to even think about marriage and children for her. To me, I will be happy when she graduates from Development K in May along with her peers.. and SHE WILL, she is doing AWESOME.
I have read everyone's opinions here and I can agree with everyone. Of course I want Katie to have and be everything that she can. It is my opinion that in NO WAY was Jackie being condescending, she was just sharing her experiences and thoughts.
Parenting is BY FAR the hardest thing anyone has to do. Babies are so fragile and need so much love and attention, toddlers are so busy and need constant supervision, older children are into everything and need constant nuturing. Teenagers, I won't even go there.
I totally understand that Not one parent here would leave their child with DS alone with their children. That they would be there to support, but in all honesty, when Katie is 20, I will be 61 and God Wwlling, I will still be around to help her, but what if I am not?
Thank you for listening to my thoughts.
Cathy
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Post by Emilysmom on Feb 22, 2006 23:09:49 GMT -5
Amanda, I have started several times to respond to your questions, but I always get so long winded and lose track of where I was going with the post! So, here goes:
The websites that have been posted are great, and should help you a lot. I don't have anything else to offer in that area. I did go to a Down syndrome conference 2 years ago and enjoyed a panel discussion by about 4 couples with Ds. One of the couples was happily married and seemed to be doing very well!! They had a guardian, who drove them to do their grocery shopping and help with paying bills, etc. I don't remember all the specifics (Tricia.......help me out here. Your memory is way better than mine!), but I do remember feeling that they had a really good life together!! Another couple was engaged and they talked excitedly about their upcoming marriage. And, both sets of parents talked about their plans to help the couple in any way to help them succeed. There are probably many other couples who have been able to make marriage a reality as well, but those are 2 situations I remember in a positive way. And, there are those marriage situations that have been posted about (and many others too, I'm afraid) that were horrible nightmarish ones that I would never want for my daughter!
My daughter is fourteen, and there is no way at this point in her life that I can know if she will be able to handle the responsibilities and committment that is required with marriage. Does that mean I'm putting unreasonable limits on her? Not in the least. Does it mean that I'm prepared to bash her dreams of being a wife? Certainly not. We're going to play this one by ear, I think.............no need to decide today.
One thing I always think of is that my husband and I will be happy to do whatever it takes to support Emily, but what if we are no longer alive??? Is it fair today to say that her brothers will be willing to take over for us and provide the support she and her husband might need? No, I don't think this is something I can decide on today either.
Wow.........after re-reading this, I think I'm sounding like Scarlett from "Gone With the Wind"! I'm going to worry about that tomorrow!!
Jackie~ We've been blessed for years to watch your Emily graduate from high school, go off to college, get a job many miles from home, and to have some awesome Halloween parties! Your posts about her have been inspiring and heartwrenching at times (It was hard on ME to let her go off to Houston!).........but I don't think they have ever been condescending in the least. Today was no exception. Thanks for sharing your wisdom with us. I learn from you all the time; even when I might not agree at times.
Susan
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Post by Radonna on Feb 23, 2006 3:08:13 GMT -5
Oh man.
Well I think if I posted right now all the medication I am on would lower my inhibitions enough that I might loose all my friends.
But I can't NOT
Jackie I cherish you. Cherish every Emily story I have ever heard. I carry a piece of Emily around in my heart and have from the very first time I came to Uno Mas 6 years ago. You are the example of the place I want to reach one day. Your life is well Balanced, your successful you have a close loving family, children that care for each other and love that radiates off the computer screen and touches complete strangers by the power of it. I want every piece of wisdom you would like to share with me. You have raised AMAZING children. ALL of them and I stand in awe of your skills as a Mother especially as Emily's Mother, her biggest fan and her strongest supporter.
Debbie. You are one of the smartest people I know.
Now my opinion on the rights of parenting
I won't ever have to face this with Kaden. I'm not selling him short I am just being realistic.
BUT
My cousin is MR and is the most devoted Mother I know. Her world is her son. She had her tubes tied after he was born about 6 months after because she said she didn't want to have another baby because she couldn't love another one as much as the one she had. It wouldn't be fair. I've seen my cousin tune out a room full of talking adults to talk to her son when he came to her. She didn't tell him to hold on or wait or send him out of the room. She took parenting classes and followed them by the letter. She raised her child for 7 years. She and her husband lived behind her in laws in a little trailer they bought with their combined SSI income. One day Loretta's inlaws took her to a lawyer and told her she was signing some papers to make it easier on Nathan going to school. THEN they kick Loretta off of their property with only the clothes on her back. Now for 7 years she had cared for her child on her own not only kept HER home clean but cleaned her in laws home too and had taken care of her Mother in law on several occasions after surgery. Loretta could not read the papers she signed and she had signed away her rights to her child. Even when the judge realized that Loretta had never realized what she signed he still upheld the adoption by the in laws. BECAUSE of Loretta being MR. When Loretta's divorce was granted. She didn't ask for her half of the Things purchased during their marriage all she asked for was an 8 by 10 picture of her now 10 year old little boy that she has only seen by going to the same church as her inlaws and despite their attempts to turn him against her. HE REMEMBERS how much his Mommy loves him and she tells him every time she can steal a chance meeting with him. So when I heard about this post I immediately thought about Loretta and wanted to defend her right to be her child's mother. This also has another side in the fact that Loretta has a twin sister named Laura who has the higher IQ (still low) but did not make a good mother at all. Last time I talked to Loretta about 3 weeks ago. She just learned that the judge wouldn't give her visitation to her son. That he was upholding the "FRAUDULENT" Adoption. I know that I would have been beyond comforting. But the nurturer in Loretta had her comforting me. "Nathan knows who his Mommy is, and when he's old enough he'll come to me"
I guess what I want to say is that people are unique. What kind of parents they make isn't always decided on IQ but on someones heart and what their PERSONAL ABILITY is to raise a child.
I have never met anyone with Down syndrome that has a child. I do know of one Lady that had Down syndrome that wanted children and her family told her that she was co mother to her four sisters' children and that satisfied her need for children. They never denied her any experience in caring for them and a few she never asked for again like giving them baths because they won't stay still, but she never flinched at diapers. She also would parrot her Mom's quote about the best thing about being a grandparent is you can give them back.
if you want to single out a group of people to ban or get lawyers to terminate their right to have children, to start with people that are drug addicts or people that consistently abuse and abandon their children but still get them back from the state. The most horrible cases of abuse are usually done by people with normal IQ's and serial killers are usually at above average intelligence. So look at the people not the group that you can fit them into.
I do totally get what you were saying Robin! How any risk to a child is too big of a risk.
Radonna
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Post by Alice on Feb 23, 2006 12:00:19 GMT -5
Wow, so many interesting views. I remember when Luke just was born my first question to the social worker was: "Would be he able to marry?" I do not know why that aspect was so important for me that time... I probably wanted (and still want) for my son a normal life as possible. Actually, she said: "Yes, he will be able to marry but the same type of a girl". She meant the girl with DS. So, if our boys with DS marry girls with DS and boys are sterile - it means there will be no children at all from that marriages. See the Mother Nature did solve that "problem" by itself.
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Post by Kristen on Feb 23, 2006 12:51:57 GMT -5
Rbin - I understand what you are saying, just like I do Jackie. She has been on this road longer than I have, but what I was hoping to OVERALL convey is that this is the first generation being raised with the "new system". I think that learning from those who have gone before is DEFINATELY valuable, but I don't think we are on the same road. It has been changed by those who have gone before and for that I am eternallly grateful, but let's all just wait and see what may come now that it is different and becoming moreso every day.
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Post by andrewsmom on Feb 23, 2006 13:39:37 GMT -5
Can I just cut and paste Radonna's reply here??? LOL!
Radonna....you have so nicely put into words what I could not. I feel (just MY opinion) that there are an overwhelming number of cases where children have been hurt...mentally, physically, emotionally....from parents that have no visible disabilities at all. And Yes.... every person (disability or not) is unique.
Kristen...I also agree that this generation that is still so small is a whole new generation and is being brought up much differently. I also am very grateful for ANY advice or stories from those that have been through this already. I have been talking with a woman who has a son with DS. He is in his late 20's now. She is CONSTANTLY telling me how lucky I am that Andrew is being brought up in this day and age. She says she can see how much better Andrew is doing then her son did at his age. She is so happy with all the therapy and support he is getting. She seems sad when she talks about "what could have been" for her son if she had brought him up in today's world. Her words...not mine. She tells me not to let a day go by that I don't try to teach Andrew something new....because she believes he can do anything. So...I will also take the approach of "let's wait and see" because one never knows.
I don't know why, but I am FACINATED talking to people that have older children with DS. My sister says it's an obsession of mine...lol! I love to hear advice from them and listen to stories of what their children have done. I also would LOVE to talk to any adult with DS but haven't got up the courage to approach any yet. ( I don't think I'd know where to begin!!).
So please... if you are the parent of an older child with DS don't stop giving me advice, or stories, or your own personal opinions....I love it!!!! That's why I come to places like Uno.....to get everyone's opinion. I honestly am grateful to all.
-Trisha
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Post by rickismom on Feb 23, 2006 13:53:55 GMT -5
;D Gee, everyone's posts are so nice- and how nice that we are writing and communicating and not arguing.
Radonna, how terrible for that lady!
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Post by chasemansmom on Feb 23, 2006 16:04:54 GMT -5
LOLOL Alice, I loved your sweet humor....and gave me my chuckle for the day, you are very right!!!! Hugs to you all, you are all a great bunch of people!!!! Robin
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Post by hidyperson on Feb 23, 2006 20:37:26 GMT -5
I think when using a phrase like “ the first generation” and the "new system" that one has to be VERY careful to not imply that ones child will be 'better' than others. It sounds a lot like, "the poor things, if only they'd had all the modern conveniences we do now...”
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Post by Radonna on Feb 23, 2006 21:14:00 GMT -5
Jeff, you are so right!! It makes me feel like someone is saying my child is out of date. Oh is speech therapy is a little out dated and his IEP needs more modernized.
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Post by Jodi on Feb 23, 2006 23:55:16 GMT -5
Man oh man oh man - what could I possibly add to this post??? When Ryan was first born, I wanted to do everything I could so that he could be as "normal" as possible. Um... okay so now I know Ryan is Ryan and that is that - right? Where Ryan is today is totally different than where he was 5 years ago. I still dream big, but look at Ryan and where he is TODAY. If he doesn't marry - NO BIG DEAL TO ME!! If he wants to marry, we'll check it out THEN but not going to worry about it right now... we've got another school to check out and we are STILL trying to undo all the negative crap that happened when he was with 1:1 help for four years. Honestly, I worry more about what the heck happens if I'm gone tomorrow or 10 years from now - KWIM? No disrespect to those who think this is major and importante - my reality is different (because of what I decide to make important ) and marriage just isn't tops on my list. Currently it is getting Ryan to STOP SHREDDING HIS SOCKS!!!!! JMHO!! Jodi
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Post by CC on Feb 24, 2006 1:33:19 GMT -5
Inquiring minds would really love to know what exactly does "new system" mean?? CC
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Post by Alice on Feb 24, 2006 10:12:20 GMT -5
Jodi, "Honestly, I worry more about what the heck happens if I'm gone tomorrow or 10 years from now - KWIM?" It is my biggest fear too. What will be with Luke, when my DH and I will not be around him?
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Post by Jackie on Feb 24, 2006 11:27:41 GMT -5
I am very curious too to know what the "new system" is...and how the road is so "different"...not trying to be ugly...just truly curious...as I try to stay caught up with new trends...would someone please post about it....
Jackie mom to Emily 25
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