Downs Syndrome

[ecki]

The other one that really got to me when my son as a baby was "...but they are such happy children."

Oh gosh, my mother just said that to me this weekend (visiting for the weekend, haven't seen her in 2 years and she's 74)...and then added "but their parents aren't"

HUH???????

Of course I had to say that every parent I knew who had a child with Down syndrome was just as happy as any other parent. Maybe not when they first get the diagnosis, but they are just kids like any others!! If anything, I find most parents with kids who have Down syndrome "happier" in some ways.

 

[brenalexacamp]

I think we are happier too-we appreciate little things, are kinder to other people, maybe have more patience--all lessons we learn when we are younger-when we have the kids than when we get the wisdom when we are elderly-hope I am getting my point across-


little things don't bother me as much-oh your poor baby doesn't like the toothpaste-well mine had to be put to sleep for 8 extractions-

let someone TRY to understand poop issues-not just with holding game-but fully impacted! ew!!

So happy those days are over--all these things make us stronger and the best way to help yourself is to help someone else.

the most wonderful thing happened 1 year we went-we were walking through the castle and a little girl with down's came over to bren and hugged him and called him friend-the mother didn't speak english and the father-said she was the best kid ever-and we were going to have good times with him -and then we all cried

a very nice australian man gave me a tissue one time during the parade-1st time sitting in the wheelchair section for the parade and I was really overwhelmed by the terminal kids--they were loving the parade!

If i didn't have bren-i would not have experienced that kindness of a stranger

 

[LauraVV]

As the parent of a child ( now 24) with Down Syndrome and having been involved with groups who do initial contacts with new parents...........my advice would be to treat this baby as if you would any other.

I appreciate you wanting to the do whatever you can for your friend. While I had no adjustment issues when he was born I saw many parents who did. Receiving a "special" book may not necessarily be well received. It may be interpreted as a consolation prize.

I have to agree with you! Our daughter was born at 22 5/7 weeks (~15 oz at birth but went down to 13 oz). We didn't get cards, calls, presents, etc., until she had been home from the hospital for a long time. People didn't call to see how she was doing or how we were holding up. We didn't know if she'd live for months. I'd really have appreciated congratulations, a friend, baby presents, and, well, dinner. Doesn't every mother of a newborn need meals?

I remember being terribly offended by a comment made by a photographer friend when my daughter was about eight months old. I asked about her taking pictures of my daughter and she said it'd be better to wait until she got a little bigger. I was totally offended. Now, this offense was totally misguided but I wasn't ready to see my daughter as different from other kids. She was 8 months old and weighed 8 lbs. Of course she was different. Of course it would have been difficult to photograph her. But I wasn't ready. I wanted to celebrate our child.

So, I'd recommend giving your friends a baby gift with congratulations about the birth of their wonderful new blessing. Then, I'd ask what your friend wants/needs regularly. Having a child with a disability can be terribly isolating. We lost all of our friends. My hubby and I have been out together alone maybe 4 or 5 times in ten years.

You know, we have a great kiddo. But, it can be tough to take it all in at once. We were fortunate because, while our daughter was gravely ill, we had a long time to discover what her abilities would be. This family, while they know that their child will have issues, won't really know his abilities for quite a while.

Sorry, long winded today. Please be an available friend for this family.