OT: Anyone have a child with Down Syndrome?

[EllaDisney]

We discovered last Thursday via ultrasound that our daughter due in September has Down Syndrome. She also has a heart defect called Endocardial Cushion Defect. Anyone have experience parenting a child with DS?

Thanks
Bianca

 

[thegrimdwarf]

You may get better/more responses if you post in the DISabilities folder.

 

[mom2aredhead]

I don't but just wanted to give you . That's got to be very tough to hear.

There's a woman on this board that has a beautiful picture of her daughter who has Downs with a caption something like "princesses can have down syndrome too"...but I agree with PP about heading over to the DISabilities board too.

 

[nessz79]

There's a woman on this board that has a beautiful picture of her daughter who has Downs with a caption something like "princesses can have down syndrome too"....

My heart goes out to you, OP! I have seen some very happy families that have a child with DS. I don't have any personal experience, but just wanted to pop in.

 

[Alison_in_Wonderland]

While I don't have a child with DS, my 5 year old nephew does. Thankfully, he's been very healthy. He is a great kid and is going to be mainstreamed in kindergarten next year (he is doing an extra year of Pre-K.) He is a talkative/Elmo loving/Lion King obsessed/dancing fool. Oh, and he loves to tell knock knock jokes (that make no sense!) He is the apple of everyone's eye.

I can only imagine this is hard news to hear. Good luck to you and your family!

 

[MamaOfTwoPrincesses]

I'm so sorry! My sweet goddaughter has Downs, and she is just a doll. Like the PP''s nephew, she is about to enter Kindergarten, and she loves her pre-school. She has her own sweet little personailty, and she really is a dear.

 

[Tnkrbelle565]

Just send you a little thought, prayer, and wish for good luck.

 

[brymolmom]

My nephew does. My bro and sil did not find out prior to birth - not sure if that made it more difficult for them but I am ALL about INFORMATION and I can tell you there is tons of info on DS out there. Here in Rochester, NY there is a great DS networking group. I have emailed them asking a few questions here and there. The first thing I did when i found out was go onto the babycenter.com Disabilities board and ask parents for a book recommendation to 'spell it out' for a new parent. I went to the bookstore and bought that for my brother and got a cute little outfit for my nephew and brought them both to the hospital.

Obviously - you are anxious for information too since you're already here asking this question. Keep looking - you will find out a lot of information about your upcoming blessing.

 

[I Believe n Fairies]

I do not have a child with downs either. I do have friends that are due next month with their sweet little surprise daughter with Downs. My friends were very scared, afraid, and angry when they received the diagnosis. This was something they simply were not looking for. Their daughter will need heart surgery at about 3 mos old. My friends have already visited early intervention centers. I would recommend that you do the same. Once they visited the center and spoke to several specialists, they feel more equipped to handle the situation. My friends have two very high spirited little boys and this pregnancy was a surprise. Not only did they get their girl, they are getting a very special girl.

Good luck. I understand how hard it must have been for you. Please seek early intervention in your area. I'll be sure to keep you and your family in my prayers.

 

[MightyMom]

Congratulations!!!! How exciting!

My best friend has a son with Downs. He is an incredibly wonderful child. He is funny, sassy.... and very bright. He is functioning full time (with academic modifications) in a 2nd grade classroom ALL DAY! He is in love with Miley Cyrus.

I have a son with cerebral palsy ....and my little one shows signs of autism. I know the shock of having a child with a disability..... but I also know the overwhelming joy that overflows once the shock wears off. You'll never take a single breath, step or word for granted.

You are blessed!

I hope you enjoy this.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 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.

 

[HeatherN]

Hello and congratulations! I have not had a chance to introduce myself here yet. I was looking the boards over because my nine year old daughter (who happens to have Down syndrome) is recieving a Make a wish trip to Disney this August.I saw your post and just had to resond.Hearing news like that is hard at first and you will need some time to process all that is happening. Life with a child with Down syndrome is not always easy but I wouldn't trade it for the world. My daughter is an absolute joy.She also has the same heart defect and she had open heart surgery at seven weeks old.Please PM me anytime if I can help or you just want to talk.I can also point you in the right direction of some great information and support.

 

[jackskellingtonsgirl]

I used to nanny a little boy with Down Syndrome.

His parents were lucky that there are A LOT of resources here. There is a group called the Down Syndrome Guild that provides support and education for parents as well as outings and such for the families, there is a genetics clinic at Children's Medical Center, there is a preschool (The Rise School) for kids with Down's & other developmental delays.

From interacting with the kids at the preschool I can tell you that every child is vastly different. Looking at a group of kids with Down Syndrome you will see some that are very nearly on the same level as "typically developing" children, others will have more profound delays. Some of the students were walking, talking, feeding themselves, and toileting on the same schedule as any other kids their age.

My little friend didn't walk until he was 27 months old. I left that job when he was almost 6 and he still wasn't talking or toileting on his own. He had speech therapy and occupational therapy several times a week in addition to going to a school designed to prepare the children to attend a mainstream classroom. He was not ready for mainstreaming, so he went on to an elementary for kids with developmental delays.

There really isn't a way to know where a child will be on the spectrum - you just have to wait and see, and provide all of the opportunities you can to maximize your child's potential.

 

[holly7347]

I'm so sorry! My sweet goddaughter has Downs, and she is just a doll. Like the PP''s nephew, she is about to enter Kindergarten, and she loves her pre-school. She has her own sweet little personailty, and she really is a dear.

All the children I have known with downs have all been the most loving children you could ever meet. DD#1 has a girl in her class with Downs and she loves being her little helper, she holds her hand and walks down the hall with her on their way to lunch and things like that.

I think researching as much as you can ahead of time is a good idea just so you have an idea what to expect.

 

[katemomto3]

Congradulations. Like many have said, there are a ton of resources out there for families with a child with downs. Our neighbors have a son (about a week younger then our son) with Downsand getting to know him and watch him grow has been a real blessing for our entire family. I am sure you are scared now but it might help to look into going to a buddy walk or another community event where you could meet other families. Particularly if you have other kids so that they can learn what to expect. Our son has cancer, and meeting other families dealing with the same issues has made a real difference for us. HTH Kate

 

[Lilyzmom]

Hi,
Congratulations! My daughter Lily has down syndrome. She is 22 months old and is the sweetest girl in the world. She is walking and signing. She loves to play with her toys, sing songs, and listen to books. Here's a message board that's teriffic for information and support. www . downsyn . com. You can read through Tom's great information and there's a link for the forum at the bottom. There's plenty of people that can answer almost any question. Lily had an atriventricular septal defect when she was born. That's basically two holes in her heart. She had open heart surgery at 4 months old and came through like a champ. You would never know now unless her shirt is off.

 

[andersonck]

Congratulations! I would suggest the Downs-heart group on Yahoo groups. My youngest son was born with DS and a heart defect. I learned a whole lot about the heart defect and about down syndrome too. There are a lot of knowledgeable and resourceful Moms on there.

Best wishes and God Bless.

Cheryl Anderson

 

[minkydog]

My son does not have Down syndrome, but he has a chromosome disorder that has a lot of similarities (Pallister-Killian syndrome, chromosome 12). As a PP noted, Down syndrome can affect people differently, from milder mental impairment to severe-profound impairment. Some have physical problems, such as heart complications which require surgery. You can find tons of information on the internet about those things.

I can tell you a little about living life with a child with severe intellectual impairment--you love them the same. No, you love them more. You love them for all the things they can't do and you push them to try new things. You learn about therapies you never even heard of and sometimes they work for your child. When they don't, you move on. Accomodation will become your mantra. You will do whatever it takes.

My Christian is severely mentally handicapped. He is also autistic, hearing & vision impaired, and has seizures. Sounds bad, doesn't it? But he is so lively and fun and friendly. He learnes new things all the time. Just this month he learned how to swing! Christian is loving; he doens't hold a grudge. He isn't sneaky. He doesn't negotiate. He can be naughty, in the way that a 1yr old is naughty. He never tries to hurt someone and he lives for a good hug.

I have two older kids, one with bipolar disorder and ADHD. I must say, raising Christian has been a piece of cake compared to raising DS21. Best of luck to you! You're in for the ride of your life