Down Syndrome

Rhetts1stWDW

Mouseketeer
Joined
May 12, 2013
I don't know if this is allowed, or the right place. My post isn't about Disney but I know the Disboard members are a supportive group and so I came here.

We just recently found out that we are having a baby with down syndrome join our family. My little sister is due with a baby boy in mid-Sept. She just called me to explain that they've been going through some testing and have been told there is a 99% chance that my nephew will be born with this disorder. (They have decided against amniocentesis, so they can't say for 100%)

I honestly don't know much of anything about it and I am scared to just start Googling. Where do you even start when you get that kind of news? Does anyone know any good resources?

My sister lives across the country from us (she is in CA and we are in VA) and every time I have talked to her the last couple of days she has just ended up in sobs. I feel helpless to comfort her. I just don't know where to start.

I don't know what the point of my post is, I guess I am just rambling sorry. But I would appreciate any insight you all might have.
 

lanejudy

Moderator
Moderator
Joined
Oct 27, 2011
Hello and welcome to the disABILITIES Forum! The first news of a syndrome diagnosis can be shocking. Please share this with your sister: http://www.our-kids.org/Archives/Holland.html :hug:

With a diagnosis anticipated before birth, I would hope her doctors will put her on the right track to get Early Intervention services started even for an infant. And then a reminder to enjoy your nephew for whom he is -- each child is an individual regardless of any diagnosis. Special needs children can be so rewarding!

:grouphug:

ETA: I am going to move this to the disABILITIES Community Forum since it isn't specifically trip-planning.
 
  • wiscbugs

    Loving everything Disney!
    Joined
    Nov 17, 2011
    Our daughter is 7 and has down syndrome and is the absolute joy of our life. We have a typical 10 year old son as well and they are both amazing and we treat them no differently. I am not sure why you would be scared about it....he will be a great son for your sister just like any other child.
     

    HopperFan

    "It's a bug-eat-bug world out there, princess."
    Joined
    Sep 6, 2003
    My son just turned 31. Even with all of his/our challenges I wouldn’t change him for anything. He has given way more to us and those around him than we could ever give back to him.

    For now you should do everything you would do for any baby. He will need all the same stuff, he will need all the same love and your sister will need all the same excitement that any baby brings to the extended family.

    If you really want to help maybe you could do the research for her to find the Infant Stimulation Programs in her area whether via her school system, the local ARC or independent groups. My DS started school when he was 4 months old and stayed there until age 6 – was great for both of us. Those other families became my support network - and my family was just my family, enjoying our newest member.

    I would not spend too much time googling at this point, you are likely to get inaccurate information or caught up in forums that may be more upsetting than helpful. Remember individuals with Down Syndrome are as different from each other as anyone else so do not have any predisposed opinions.

    These are two good ones for most your needs right now:

    http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

    http://www.nads.org/


    This is a great poem by Emily Kingsley. She was a writer on Sesame Street when her son Jason (41) was born. He went on to be on the show.


    WELCOME TO HOLLAND

    by Emily Perl Kingsley

    ©©1987 by Emily Perl Kingsley.

    All rights reserved

    I am often asked to describe
    the experience of raising a child with a disability
    to try to help people who have not shared
    that unique experience to understand it,
    to imagine how it would feel.

    It's like this......
    When you're going to have a baby,
    it's like planning a fabulous vacation trip - to Italy.
    You buy a bunch of guide books and make your wonderful plans.
    The Coliseum. The Michelangelo David. The gondolas in Venice.
    You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives.
    You pack your bags and off you go.
    Several hours later, the plane lands.
    The stewardess comes in and says,
    "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland??
    I signed up for Italy! I'm supposed to be in Italy.
    All my life I've dreamed of going to Italy
    ."

    But there's been a change in the flight plan.
    They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you
    to a horrible, disgusting, filthy place,
    full of pestilence, famine and disease.
    It's just a different place.

    So you must go out and buy new guide books.
    And you must learn a whole new language.
    And you will meet a whole new group of people
    you would never have met.

    It's just a different place.
    It's slower-paced than Italy, less flashy than Italy.
    But after you've been there for a while
    and you catch your breath, you look around....
    and you begin to notice that Holland has windmills....
    and Holland has tulips.
    Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy...
    and they're all bragging about
    what a wonderful time they had there.
    And for the rest of your life, you will say
    "Yes, that's where I was supposed to go.
    That's what I had planned.
    "
    And the pain of that will never, ever, ever, ever go away...

    because the loss of that dream is a very very significant loss.

    But... if you spend your life
    mourning the fact that you didn't get to Italy,
    you may never be free to
    enjoy the very special, the very lovely things ...
    about Holland.
     
    Last edited:

    Rhetts1stWDW

    Mouseketeer
    Joined
    May 12, 2013
    Our daughter is 7 and has down syndrome and is the absolute joy of our life. We have a typical 10 year old son as well and they are both amazing and we treat them no differently. I am not sure why you would be scared about it....he will be a great son for your sister just like any other child.
    You were not scared 7 years ago when you were told your daughter's diagnosis? I can't put myself in your shoes or my sister's either, but it is a scary situation even for me as the aunt. So many unknowns about the baby's health and his future. Of course we are scared and worried because we love him.
     
  • OurBigTrip

    DIS Veteran
    Joined
    May 27, 2013
    You were not scared 7 years ago when you were told your daughter's diagnosis? I can't put myself in your shoes or my sister's either, but it is a scary situation even for me as the aunt. So many unknowns about the baby's health and his future. Of course we are scared and worried because we love him.
    Well said - it's perfectly natural to be scared! I have a nephew with Down Syndrome, and he is the love of all our lives, just a joy. He did have some significant health problems early on, but with outstanding medical care, he's the picture of health now.
     

    Rhetts1stWDW

    Mouseketeer
    Joined
    May 12, 2013
    That is a big part of what is scary for me. After only very briefly reading some information I am learning that there are a lot of health issues that can go along with down syndrome. My sister and BIL are going to Stanford tomorrow to have a fetal heart ultrasound done because there was also a white spot on the baby's heart. After that they will meet with a genetic councilor and do another anatomy scan this upcoming Friday. It's a lot of stuff to hit you all at once.
     

    lanejudy

    Moderator
    Moderator
    Joined
    Oct 27, 2011
    It's a lot of stuff to hit you all at once.
    It is a lot all at once. And that's true of many diagnoses, whether pre-natal or as an infant or young child. Or even diagnoses given to an adult. Feeling scared is so common and expected with a new genetic diagnosis -- scared of the unknown. Your sister and brother-in-law will become very well acquainted with medical facilities and doctors and various tests or procedures. It's always scary, even once it all becomes "old hat" because we worry about the what-ifs that popped into our minds. We learn to push most of those aside, appreciate the moment, accept the help and expertise of the professionals, and enjoy our family members for their individualities. Life is never the same, but I would never want to go back to life without DD.

    I agree with the poster who suggests not doing too much Googling -- at this point you are unconsciously likely to focus on the negatives.
     

    Yoshiandi

    Just working for my next Disney fix..
    Joined
    Apr 10, 2012
    I don't know if this is allowed, or the right place. My post isn't about Disney but I know the Disboard members are a supportive group and so I came here.

    We just recently found out that we are having a baby with down syndrome join our family. My little sister is due with a baby boy in mid-Sept. She just called me to explain that they've been going through some testing and have been told there is a 99% chance that my nephew will be born with this disorder. (They have decided against amniocentesis, so they can't say for 100%)

    I honestly don't know much of anything about it and I am scared to just start Googling. Where do you even start when you get that kind of news? Does anyone know any good resources?

    My sister lives across the country from us (she is in CA and we are in VA) and every time I have talked to her the last couple of days she has just ended up in sobs. I feel helpless to comfort her. I just don't know where to start.

    I don't know what the point of my post is, I guess I am just rambling sorry. But I would appreciate any insight you all might have.


    I have 2 kids with Down Syndrome.. PLEASE feel free to contact me. I know what you are going through.
    I will tell you those tests are not 100% accurate. Mine was normal and my daughter has DS. My SIL was positive for DS and her son is completely normal.

    Melissa@*********************.com


    OR PM me on here.
     
  • ToddyLu

    Welcome aboard explorers- I love Mr. Ray
    Joined
    Jun 6, 2008
    My co-worker gave birth to a precious baby boy last year who was anacephalic, meaning his brain did not form correctly. She found out on the first ultrasound and called the clinic that afternoon to speak to one of my other co-workers with labor and delivery experience. It was devastating for all of us. She kept her little boy and was his Mama as long as possible. He passed several hours after his birth. She had a photographer in the delivery room to take photos of Wyatt while he was physically with them. They are beautiful pictures. We looked forward to him getting here for her...rubbing her belly and talking to him. For his little life he affected so many of us, he was cherished and loved, he touched so many people. Even the patients were touched by his brief visit. We talk about him often, he was here, he was a person and he was very much loved. We gave her an outfit for him since we did not get to have a baby shower. We had it blessed by the catholic bishop that was one of our patients. When we gave it her we told her that it was for him to have, something sweet of his very own, just like you would for any expectant Mom. I do not know if he wore it or not and it doesn't matter. He needed that gift, an acknowledgment that he was part of our work family.

    My co-worker is expecting again in October. A different set of circumstances with the joy and excitement that comes with a baby announcement. This baby is lucky for he/she has an older sister and an older brother, Wyatt. I think just being there for her. Asking about the baby when appropriate, listening to her fears and concerns. When the baby is named being sure to call him by his name, that sort of thing. I believe that is why these things happen they teach us a different aspect of love, acceptance and tolerance.

    Another friend had a baby with multiple heart defects...so we all learned CPR and got flu shots, so we could babysit or stay with him.
     

    DisMommyTX

    DIS Veteran
    Joined
    Mar 7, 2015
    There are lots of online forums and discussion boards to support families of children with special needs. Raising children with special needs is hard, but it may come with rewards you cannot imagine. Your family will have issues throughout your lives, but you will not be alone. There are so many supports, from therapists to emotional support groups, to books full of strategies. Every child and family situation is different. Try not to assume the worst (or the best). Fear of the unknown is to be expected, but worrying will not change what happens. Deal with what comes, when it comes. Children and adults with Down Syndrome face extra challenges, but they also have amazing gifts. One of my favorite quotes was from a mother who adopted a second child with Down Syndrome who described raising her children as 'a lifetime of hugs'.
     

    kandb

    DIS Veteran
    Joined
    Apr 22, 2006
    I am friends with a co-worker whose daughter adopted a little girl with down's syndrome. She specifically wanted a special needs child and my friend
    told me that this is not that uncommon. I work as a health inspector and see teenagers/young adults working that have DS all the time. They are very
    happy and seem like dedicated workers. It's a shock to the family but it will be OK.
     

    cedricandsophie

    DIS Veteran
    Joined
    Apr 8, 2014
    We have a daughter, age 29, with Down Syndrome. She also had a significant heart defect, which many kids with Downs have. She was in intensive care from age 6 months to 9 months before she was strong enough for heart surgery. Now she is happy and healthy with a great social life, participates in any special okympics activities and sports, has a vast array of friends, a rewarding job. Alex is the light of our lives and the rest of our family. She has a long time boyfriend who is also disabled, but not with Downs. I hope that someday they might marry. We will be happy to be responsible for both of them if necessary. She is turning 30 in June and we are having a Cinderella ball for her With over 100 people and a DJ and some other surprises.

    One of the things we always heard is how loving kids with downs are. That's true. But our daughter is also stuck in puberty, with all the pouting, drama, acting out, etc, that entails. These kids are normal in so many ways, just very delayed. She is sad and funny within a 15 min period.

    Just like with other kids, there are levels of disability. Our daughter reads well, takes the bus or train, gets money at the ATM, can find her way around our local downtown eithut a problem, Goes to restaurants and buys meals,
    S, figures out her phone or iPad in minutes And went through a two year special college program living in a dorm. She plays soccer, basketball, swims, bowls and runs track. Sh goes to movies on her own all the time. But she could never pay her own bills, could never learn to ride a bike, always pays wth 20s because she Csnt figure out change, refuses to move out of her room into a bigger bedroom,etc. all of her friends with DS have various levels, some are higher functioning, some are less. Your nephew will figure out his place in the world when it's time and with the help of you and the rest of the family.

    I couldn't imagine our life without her. As soon as the baby is born, get in contact with your local national association for Down's syndrome org. They hav volunteers who can come t the hospital to offer resources and support. Your nephew will need all sorts of therapy and
    Maybe medical interventions. The family just needs to be prepared.
     

    spacemountain

    <font color=red>A million points for you!<br><font
    Joined
    Jul 1, 2003
    You never know til the baby is born what complications he may have, but it is good still to be prepared and have some idea. You also never know when the baby is born what he'll be capable of as he grows up. I'm an early childhood special ed teacher, and I have 4 wonderful students with Downs right now, each at different levels cognitively and motorically. When I talk to their parents and hear what the doctors told them their child wouldn't be able to do and see all that they are capable of now just at 3 & 4 years old, it amazes me that they were told those things. And so proud of these kiddos for proving all they can do! Like with any child, you have to wait and see what he's got in store for his life :)

    Make sure that your sister gets set up with Early Intervention services, which the doctor should help with. Therapists will come to the home to work with him until he is 3, which is provided by the state. At the point he turns 3, he will be able to enter into an early childhood classroom and continue to receive services there. Also, I'm not sure where you live, but look into the organization called GiGi's Playhouse and see if there is one nearby you. It is an excellent organization designed to be a support network for families of children with down syndrome to come for resources, support from other parents, programs, a place for the children to play, etc.!!
     

    afnaechiquita

    DIS Veteran
    Joined
    Apr 3, 2008
    the best thing for your sister right now, while she is in the shocked phase, is to reach out to local support groups. when my brother was born, my parents started an online support group, which helped them (and the others who joined them) tremendously on their new path.

    it is a big challenge to raise a kid with DS, but as most will say it's very rewarding. she can find her local Arc group here: http://www.thearc.org/find-a-chapter/california
     


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