Question for Parents of down Syndrome Kids

Hi K.!
WHen I was expecting, my test results came back with high chances of Downs. I chose not to have an amnio because it was not going to change my course of action. I also believed that I was meant to have that child. I chose not to tell many people before hand because I did NOT want people to say "oh no" or think if it as a bad thing. I was EXCITED! I did not want anyone to think there was anything negative about me having this child! I was concerned because no parent wants their child to have to deal with the challenges that come along with Downs, but other than that I was fine with it all. I actually felt like I would rather a child with Downs come to me than to a parent that might view it as "defective" or a "burden".

That being said, I did appreciate being able to educate myself before hand. I hadn't realized how many issues came along with Downs. My child ended up not having Downs, but I was glad for the chance to be prepared. When I read things, I did not find that much was going to be different when he was an infant unless there were digestive problems. I think that just treating this baby like any other new baby is the best thing. Focus on the whole child, not the syndrome. If your friend needs to talk about her concerns, be there, but chances are it is not going to be much different from the insane tiredness that we all have had! Take dinners over, watch the baby while she naps, and just the regular stuff. If she has other kids, she may need a sitter while she takes the baby to the doctor as there may be extra appointments, but I think this will depend on when/if complications arise.

What a thoughtful friend you are to ask about what you can do to help. That is probably what she will need most :)

First and foremost treat her and the child no different than you would any other baby. Also, put the child first. Do not say "downs syndrome child...say a child with downs syndrome". I cringe when I hear people focus on the disability. This is a baby that happens to have DS. I do not suggest you offer any "suggestions" to her unless she asks you for any or your oppinion. She has time to adjust to having a child with special needs as she knows before birth. This was not the case for me. I found out my daughter had DS at birth. I was in shock and I went through grieving the loss of the baby I was expecting and then accepting my daughter Hunter and her disability. It is not easy, and I still find myself sad at times that she won't have the life that most kids do and that I had. She just turned 12. What I have come to realize is she will have a wonderful life and we focus on "the here and now". What matters in this moment and what is important. It has helped all of us that know her to live in the moment and not take life for granted.

Gigi's playhouse is a great organization for families with a child with DS. Read up, know what the medical concerns are, early intervention programs in your community, speech therapy, physical therapy, occupational therapy. The baby will need all of these. When your friend is ready to discuss any of these topics, you can support her and help her work through the complications and also the emotional aspect. She is lucky to have a friend like you that wants to be supportive and educated on what the future holds for her and her baby. I wish the best for them.

I don't have a child with Down Syndrome but I am an early intervention therapist. Things that they may/may not have to do at home all depends on if the child is born with any associated medical conditions. Alot of children we see with this diagnosis seem fairly"typical" for the first few months of life until their motor skills start to become delayed. Does she live in the area? If she does most likely a parent from NADS(National Association for Down Syndrome) will contact here. Sort of a parent mentor. At some point she should have the child evaluated by early intervention. Not all kids need services right away but it's good to get a team in to give suggestions and monitor his/her development. Here is something that was written years ago to help understand what it might feel like to have a child with special needs http://users.erols.com/jmatts/welcome%20to%20holland.html
Hope that helps!

Having a 3 yr old nephew who has Downs, I would say that, generally speaking there isnt much different in the first year or so. Except, perhaps, that they have a tendency to have a harder time recovering from run of the mill illnesses like colds. Some Down's babies have a hard time learning to latch with the bottle, but "normal" babies can have issues with that too.

Your friend probably is not totally unfamiliar with the medical aspects of Downs, but it might help her to have a close friend who has done some reading also, so your friend doesn't have to explain EVERYthing that is or might be different with a Downs child. They do tend to have more respiratory issues, so bouts of colds or pneumonia are not to be unexpected. This can take a toll on an already worn out new parent. So just try to be there to support her in her physical exhaustion as well as emotionally.

There are more severe medical complications that CAN go along with being Downs (heart issues, digestive tract issues, etc), but they are not present in ALL cases of Downs, so do some reading so that YOU will be prepared to be a good friend to her.

Blessings to you and your friend.

I friend of a friend of mine has a little girl that has downs. I know they rave about a place called Gigis place. You are a great friend!

I am not a parent of a child with down syndrome but i know that they sometimes need an extra bit of help nursing sometimes so she may want to talk to a Lactation Consultant before the baby is born to go over some strategies before she is exhausted after birth trying to nurse. All the best for her and the new baby!!!

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