Thursday, June 30, 2005

Friends Just Don't Get It!

It's quite amazing. Our third child was born with down sydrome. We were not prepared for the news and were devastated because we didn't know what DS was. Needless to say, our daughter just celebrated her first birthday and our family life is amazingly beautiful, but what's up with our friends?

We make it a point to take her (Let's call my daughter Little Peanut(the nurses at the hospital gave her that name)) out and do all the things we do with our typical children. Our friends seem to be shying away from any interaction with us, and that hurts. Before our Little Peanut was born we were very involved with our friends, doing all the things that close friends do. We had our own little group of about 5 couples that did just about everything together. Now we very rarely hear from any of them. This past weekend we were surprised when we were invited out for dinner to one of our "friends" house. There were two other couples there ("friends") with their kids. It was ok but a little uncomfortable because they were very quiet with us around. My wife stepped out of the living room to change Little Peanuts diaper and she over heard her two friends whispering about not knowing what to say to my wife.

My wife pretended that she didn't hear anything. At that point we just wanted to leave.

I just don't get it. We are the same people as we were before Little Peanut was born. We have a child that has down syndrome, big deal. We don't keep her a secret. She is just as much a part of our family as my other two kids.

My question is: How in the world do we deal with our friends? They make us feel awful.


Julana said...

Welcome to the blogosphere. :-)
I think people do find it hard to know what to say, unless they've been there themselves. Sometimes you have to be the ones to make them feel comfortable. People in church groups also tend to try to help, as much as they are able to understand to do.

I've found people in parent support groups and some professionals are most comfortable as I've processed my feelings.

Barbara Curtis, blogging at "Mommylife," might be a help to you. Michael Berube, blogging at "Michael Berube," has a son with DS of whom he is very proud. "Houdini Didn't Have These Hips" is another blog by the mother of a child with DS.

Julana said...

PS. Actually, I have a friend in Pittsburgh who has a 4-yr-old daughter with DS. It might be good for your wife to speak with her.

Julana said...

PS2. You can always try a one-on-one honest conversation with a friend about how you feel. It might really break the ice for you.

Songbird said...

It sounds like maybe your friends are still back at the point of devastation since they haven't lived the day-to-day transformation of feelings with you. I would hope that the more time they spend with you and your family, the more it will become the "new normal" for all of you.

trisha said...

Hi! Great post.

I have an autistic son, and have never had any problems with weirdness. I think that is because I make a point of telling whomever we are with a little bit about my son-- that he is autistic, wonderfully bright, lots of fun, sweet as can be, etc.--and then I sort of "demonstrate" how to interact with him.

Everyone just follows my lead.

People don't want to be rude---they truly do not know how to act.

Sarahlynn said...

That is hard, and I am sorry that you're having to deal with insenstive and unsupportive friends at the time when you might need them most.

Most of our friends were great about Ellie, but some people did shy away from us for a while. One couple even tearily explained how strong and wonderful we are, what great role models for them, etc, etc. laced with apologies for staying away because they just didn't know what to say around us.

It was hard, adjusting. I am very blunt about that. But I don't weep for myself every day. I love my daughter every day. I appreciate understanding, sympathy, and support. But I don't pity myself and I don't need pity from "friends."

I agree with Trisha, suggesting that it's often up to the parents to set the tone. So true. That said, we've become much closer friends with those who were supportive, and have grown more distant from those who were so . . . selfish.

Anja Huebel said...

We have a 10 month old son with DS, who was also very sick the first few weeks, and our closest friends have all been simply wonderful, we've got much closer to them. I think all you can do if your former circle of friends can't be supportive is find new friends, people maybe who themselves have the depth of personality, the maturity that comes through real problems in their own lives, their own families. These days in the affluent West, many people go through life expecting never to have a serious problem, and are totally unprepared when things like sickness or disability come up.

amy said...

i learned early on to treat my child with down syndrom as my other 3 kids. When someone would say,"Oh, i hear they are so loving," I would say, "No, he is as much of a pain in the neck as my other kids" and laugh as I said it, That seemed to put people at ease and we could talk and they didn't feel they were going to offend me in any way. Also, when we were at the park and my son had his toung hanging out of his mouth and another three year old would say, "mommy, why does he do that?", I would just say, Oh, because thats the way God made him. Do you want to play catch with us? That way the other mom didn't have to try to explain something she didn't understand and the little kid got the true answer. Then he would play with us and see that my son was OK to play with.

Anonymous said...


I have a wonderful 9 month old little man and yes he to has DS and he also has a twin brother and they are a true blessing. My husband and I also did not find out until birth that Cole had DS.Yes,it was alot to deal with but a nurse at the hospital shared a poem with us that really help us. My husband and I share this poem with our friends and it has helped them to be more comfortable with our family. Besides upon meeting Cole you can't help but to fall head over heels in love with him. The name of the poem is "Welcome to Holland" please google it I promise it will help.