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  1. #1
    Join Date
    Feb. 18, 2001
    Location
    New York, NY
    Posts
    6,819

    Default Down Syndrome?

    So, my boyfriend's brother (future brother-in-law) just had a little boy who was diagnosed, after birth, with Down syndrome. They were expecting a completely healthy baby until birth.

    Obviously, we've been very supportive as they've mourned the loss of the child they expected and celebrated the birth of their baby (who is doing well, thus far). They are very religious (we're not) and have been relying on faith and prayers, which works for them.

    However, I have a few "musings"/questions in my head and I know that, besides my boyfriend, COTH is the only place where I can go for honest opinions.

    The first thing that my boyfriend and I discussed is the risk of jealousy when/if we have a "healthy" child down the road. Perhaps we're flattering ourselves here, but has anyone experienced this? I don't want there to be any resentment, as we've been very excited for them and have tried to be supportive however we can. I feel that by the time we have kids (probably at least five years), their son will be such an established part of their lives that it won't matter what our child is like.

    The second thing... Every time we talk to his brother, he always mentions something relating to Down's (i.e., "Baby has an extra chromosome but that's A-OK with us!"). It makes the BF and me a bit uncomfortable that he always points it out—we just think that the baby is cute however he is! Another example: we live far apart, so we video chatted so we could see the baby. He specifically pointed out the baby's epicanthal folds on his eyelids and his small, folded ears as relating to the Down syndrome. Totally unprovoked, just like "Baby's eyes are like this because of Down syndrome." Is this him self-reassuring/coping? Like I said, it makes us very uncomfortable, but I would never say something about it!

    Anyway, I'm also interested in hearing other's experiences with Down syndrome. We are hoping that their little boy can come visit us in the future and hoping that he shocks all doctors with regard to his growth and development.



  2. #2
    Join Date
    Mar. 10, 2009
    Posts
    5,339

    Default

    I would guess that your future BIL is coping as best as he can. It sounds as if he's still in a little bit of denial (perfectly normal), and that constantly talking about his son's Down syndrome and all of the associated features may in fact be his way of trying to get comfortable with it. To embrace it as "normal", because it's what will BE normal for them for the forseeable future.

    We have a family at my church whose daughter has Down syndrome. She's in her teens and is high-functioning; she's been mainstreamed into her local public school. I know it sounds like such a cliche, but this girl is a joy to be around. She ALWAYS has a smile and a genuinely warm greeting for everybody.



  3. #3
    Join Date
    Aug. 10, 2009
    Posts
    899

    Default

    No advice or experience, but kudos to you for your thoughtfulness and concern! I would guess your BIL is probably coping the best he can, and his odd habit of mentioning the Down's so frequently will peter out. Best of luck to you all!



  4. #4
    Join Date
    Sep. 27, 2000
    Location
    Southern California - on a freeway someplace
    Posts
    9,625

    Default

    A friend of my mom's had a Down syndrome daughter who is now about 30. OK, I Googled her to figure out how old she is and she Googles quite well. Here and here and elsewhere. The first of the three links talks quite a bit about her parents' reaction and subsequent actions and matches what I remember hearing.

    Some more personal notes. She and her parents were involved with an organization that held an annual fundraising luncheon. My mom and I went a few times and I was struck by the fact that Andrea was one of the oldest Down syndrome people in the room. Then it struck me that people born when she was an earlier tended to be institutionalized. Major pity. She ended up attending the college where I teach and one day showed up out of the blue as I was finishing a lab. I asked her how she knew where to find me and she said "I have my ways." Turns out she'd looked at the schedule, figured out where I was supposed to me, and come to see me. OK, many of my so-called fully abled students wouldn't have figured that out. One huge advantage that she had was her parents who truly were her advocates. They were a bit older than typical first-time parents when she was born and thus had more maturity (and finances). They are also truly good people. They fought for and stood up for their daughter.
    The Evil Chem Prof



  5. #5
    Join Date
    Mar. 28, 2006
    Location
    Oregon
    Posts
    3,373

    Default

    A baby was born to a member of my family this past spring that has Down's Syndrome. We knew ahead of time that she might have it, so it wasn't the surprise that your future BIL had. Everyone had some time to adjust to the idea that she might be born with it.

    We all absolutely adore her.

    But of course there is some wrapping your mind around it that I think everyone has to do. It sounds to me like that is the stage that your future BIL is in right now. Kind of "trying on" how this feels and IS, since it's so brand new.

    I hope you enjoy the heck out of the little guy!
    Family Partners Welsh Ponies - Home of Section B Welsh stallion *Wedderlie Mardi Gras LOM/AOE http://www.welshponies.com
    Click here to buy: A Guide To In Hand Showing of Your Welsh Pony



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