Sunday is traditionally a family day around here. It's a day of sleeping in and huge gaelic breakfasts. It's a day for going to the park or cooking a giant piece of meat. It wasn't a big stretch for me then to chose this day to write about families for the 31 for 21 Challenge.
It can be hard news finding out that your child has DS, I'm not going to lie to you. When we found out that Wyatt had AVSD and that he may have Down syndrome, my husband and I were devastated. Initially. Obviously as time has gone on, as we have educated ourselves and discovered what a joy our son is, that anger and disappointment have dissipated. However, in the first inital stages, thanks to our overall ignorance of Down syndrome, (and let's face it, an overwhelming lack of support and facts on all sides) it was there, in all it's oogey-boogey glory.
Last month I ended with "The Big Tell"; how to tell people that your child has DS. There is the other side, the people receiving the information. I've run into some (mainly) well meaning friends and family that were at a loss as to what to say. I feel for them, I do. What do you say to that? How do you express (what you think should be) support without hurting the new parents' (potentially) already raw feelings? What can you say without looking and feeling like a doofus?
As time has gone on, I've compiled a (sometimes) humorous list of "Sh☠t Complete Strangers Say" in regards to my twins. Today I have a different list: "Things Not to Say to Parents of a Newly Diagnosed Kid with DS". Many of these things have been said to my face.
"God/The Universe/Mother Nature/Whatever/Whoever gives special people, special/disabled children." (I'm not feeling so special right about now, thanks.)
"Down syndrome people are so loving/caring/happy" (Not always... sometimes they get sad like everyone else)
"I'm so sorry." (For what? You didn't give him DS.)
"You're handling this better than I thought/I could." (How do you know how I am handling this?)
"Well, the older you get, the higher the chances." (How is this helpful?)
"Couldn't they tell?" or "Couldn't you do something about it?" (How is this relevant now?)
"I can't tell/He doesn't look it/He has a mild case/The doctor is wrong" (I had him karyotyped)
"Do you know how serious/how he will do in school" (He's just been born. Did you know how your kids were going to do in school when they were just born?)
"He/she will do great things" (I don't know that right now...)
...and so on. They may have the best intentions but it is like salt on an open wound.
I'm a big believer in offering solutions as well as complaints, so here are a few ways to rephrase or "re-frame" what initially can be an awkward situation.
"Congratulations!"
"Welcome little one!"
"He/she/they sure look like you/him/Great Uncle Wallace"
"When can I baby sit?"
"What do you need?"
"He/she will be fine"
"We will all learn from each other"
"We will always be here for you"
...and anything else positive that you would say to new parents. As that is what they are, new parents.
One of the nicest things you can do for new parents is to educate yourself and show interest. Let the
parents be your guide however as they are in the initial stages of new parenthood and may not have the mental capacity to absorb a lot of new information. After all, they are hungry and sleep deprived. (Make them a sandwich for heaven's sake).
Oh, I almost forgot the most important thing to tell your friend or family that has just found out that their new child has Down syndrome:
"I love you."
That helps. A lot.
It can be hard news finding out that your child has DS, I'm not going to lie to you. When we found out that Wyatt had AVSD and that he may have Down syndrome, my husband and I were devastated. Initially. Obviously as time has gone on, as we have educated ourselves and discovered what a joy our son is, that anger and disappointment have dissipated. However, in the first inital stages, thanks to our overall ignorance of Down syndrome, (and let's face it, an overwhelming lack of support and facts on all sides) it was there, in all it's oogey-boogey glory.
Last month I ended with "The Big Tell"; how to tell people that your child has DS. There is the other side, the people receiving the information. I've run into some (mainly) well meaning friends and family that were at a loss as to what to say. I feel for them, I do. What do you say to that? How do you express (what you think should be) support without hurting the new parents' (potentially) already raw feelings? What can you say without looking and feeling like a doofus?
As time has gone on, I've compiled a (sometimes) humorous list of "Sh☠t Complete Strangers Say" in regards to my twins. Today I have a different list: "Things Not to Say to Parents of a Newly Diagnosed Kid with DS". Many of these things have been said to my face.
"God/The Universe/Mother Nature/Whatever/Whoever gives special people, special/disabled children." (I'm not feeling so special right about now, thanks.)
"Down syndrome people are so loving/caring/happy" (Not always... sometimes they get sad like everyone else)
"I'm so sorry." (For what? You didn't give him DS.)
"You're handling this better than I thought/I could." (How do you know how I am handling this?)
"Well, the older you get, the higher the chances." (How is this helpful?)
"Couldn't they tell?" or "Couldn't you do something about it?" (How is this relevant now?)
"I can't tell/He doesn't look it/He has a mild case/The doctor is wrong" (I had him karyotyped)
"Do you know how serious/how he will do in school" (He's just been born. Did you know how your kids were going to do in school when they were just born?)
"He/she will do great things" (I don't know that right now...)
...and so on. They may have the best intentions but it is like salt on an open wound.
I'm a big believer in offering solutions as well as complaints, so here are a few ways to rephrase or "re-frame" what initially can be an awkward situation.
"Congratulations!"
"Welcome little one!"
"He/she/they sure look like you/him/Great Uncle Wallace"
"When can I baby sit?"
"What do you need?"
"He/she will be fine"
"We will all learn from each other"
"We will always be here for you"
...and anything else positive that you would say to new parents. As that is what they are, new parents.
One of the nicest things you can do for new parents is to educate yourself and show interest. Let the
parents be your guide however as they are in the initial stages of new parenthood and may not have the mental capacity to absorb a lot of new information. After all, they are hungry and sleep deprived. (Make them a sandwich for heaven's sake).
Oh, I almost forgot the most important thing to tell your friend or family that has just found out that their new child has Down syndrome:
"I love you."
That helps. A lot.
I love you and Wyatt will do just fine because he has a great family.
ReplyDeleteThanks Aunt Lin. I love you too. xox
DeleteHi! I just found your blog and I think it's so well done! My friend sent me the link b/c our situations are so similar: I too have three kids:
ReplyDeleteOne big girl, almost 6. And twins, boy and girl, age 3, where the boy has Down syndrome. I also started a blog about the whole thing, for similar reasons to what you mention in "About Me" -- most things I saw were either too positive or too negative, plus I just thought our particular set of stats was pretty rare. Nice to meet another family in a similar boat. I love the way your site is organized. Mine still has some growing up to do.
Sorry to go on and on, but wanted to express my admiration. My blog is www.modernmessy.wordpress.com.
Vicki
Thanks so much for your kind words. It is a very happy thing to run into another with similar circumstances. Nice too meet you. :)
DeleteReading in order from the beinging.... The owrst comment I have gotten about Sarah Grace is that she is my punishment....
ReplyDeleteI am so sorry you had to hear that. I am sure it was someone that is not only terribly ignorant but also cruel as well. xox
Delete