Best & Worst Comments
As many of you have seen, we have conducted a little survey asking parents to share with us the "best and worst comments" they have received upon learning of their child's diagnosis.
Here are the comments that parents have shared with us.
We will be glad to hear your experiences too! Please email us at
Now for the comments:
E.A. shares:
Difficult questions!
- "Our son wasn’t diagnosed till he was nearly 5 and it’s not like we made an official announcement
By then it was clear to us and most everyone that something was wrong.
Maybe the best response was and still is that the name of the diagnosis so fits the personality! ANGELMAN - 2. In my book, the worse or most painful response – was probably the grandparents denial (up to a point) “Einstein also didn’t speak till he was 7. Don’t let anyone tell you your son is MR”
- 3. When I hear of someone diagnosed with this same syndrome I try to encourage them. The kids aren’t suffering (maybe the parents are). They are overall happy. It takes time to learn them / their needs / their communication or lack thereof but after a few years, you reach a modus Vivendi and you have a very happy and loving child. If I had to chose a syndrome, this is the one I would chose!
- 4. I would tell these friends that they shouldn’t disappear out of your life. It is hard enough for you and you need the support. Each new stage is hard and family gatherings can be most painful.
Simply say that you don’t know what to say, or how to help but that you WANT to be there and help.
I would also tell these people I don’t need to be judged or pitied
That’s it...al regel achat."
"My oldest has Down Syndrome.
1. Best response: "Any kid of yours has got to be terrific."
2. Worst response: "aaaaaaahhhhhh -- I'm soooooo sorry --- is there anything we can doooooooo?
3. What to say to a friend in a similar situation? " You will get through this. Call me whenever you feel like it. That includes 2:00 in the morning."
4. Advice to friends and family: "How about we bring over a pizza/dinner?" "
Y.R. shares:
"My daughter was born with clubfeet.
Personally, I found it strange when family members would see her feet and say, "That's not so bad." It WAS bad. I felt like asking, "What's not so bad about it?" Her case was rather severe.
But the worst response was my in-laws, who said, "Ew! Cover up her feet again, we can't look!" They refused to talk about it more. I was very offended, because this was a precious, beautiful baby who's feet were bent, not a strange, disgusting creature who should remain hidden so as not to gross people out.
Some people said, "Well, they're fixable. Not such a big deal." That was fine, as it helped put things in perspective. Yes, it's tough now, but IY"H she will walk and run like everyone else.
I know I may be strange, but my favorite response was my father's. He looked at her feet and said, "That IS pretty bad!" He wasn't disgusted, and he validated my feeling that I was indeed dealing with a serious issue. While most people would have seen him as being impolite, I liked the honesty he showed.
When I speak to others who have children with clubfeet, I focus on the wonderful treatment that is available nowadays. Even 15 years ago, treatment was much less effective. I tell them that while in the beginning, treatment is very difficult to go through, it doesn't last long. Things settle down after a couple of months.
The advice I would give to others is to try not to look at the baby as a strange creature, regardless of the diagnosis. Hold the baby, if possible, and try to see the cute baby and not just the diagnosis. Don't ignore the diagnosis. When my neice was diagnosed with Down's, I held her and said she was cute, but I totally ovoided the topic of Down syndrome, because I was afraid to say the wrong thing. That was not very helpful to my sister. Family members should say that they will be there to support the parents through all that they are going through and offer to help with anything and everything."
"L" shares:
"Best response was a parable. A group of people were sitting in a circle and each got to talk about their challenge and when they were done, they threw their 'pekel' into the middle. When everyone was done, every person preferred to take back their own 'pekel'. When you hear what other people are going through, its easier to handle what you have been given.
Another good response was, and this i found helpful in having to tell other people, Hashem sent down a special neshama and he chose my family to take care of it.
Worst response was from the director of the friendship circle who called me and said
"welcome to friendship circle". I was so mad cuz i didnt want to be part of friendship circle. That was always for other people, not me.
To people in similar situations: Its hard in the beginning cuz its a huge shock, but once you adjust and accept that this child is yours and you are gonna do the best for him/her as you can do, it makes it easier for everyone to accept the child as well.
No advice to others. I've had some no brainer comments. I wish people would think twice before they speak. You never know who else will end up in such a situation. you dont want to have to eat your words.
No advice to others. I've had some no brainer comments. I wish people would think twice before they speak. You never know who else will end up in such a situation. you dont want to have to eat your words.
I hope this was helpful."
D.W. shares:
"Well, the worst comment of all is something I don't even want to write.. it was meant as a joke but it was ill-timed, and no, I did NOT want to hear how awful my son looked even though I was perfectly aware of it. Not only that - when they say that humor is usually the best course of action- a word of caution should be included: make sure you are careful about what sort of humor you use. Parents do not appreciate others laughing at them or their child - that goes without saying, OR laughing off the situation. THEY can do that - YOU, as an outsider, cannot. YOU have to understand that it is painful. Let THEM be the ones to tell you that it is not so bad...
Validation - without condescention - goes a very, very long way.
Worst comment I can remember:
A friend, who had known the baby before the diagnosis, blurted - upon hearing that he has "a syndrome" - "wow, you'd never know - you invest so much in him!". Need I explain...
Another stupid one was "oh - so what are you doing now? I guess you're going to take a break from future pregnancies for a while..." Once again - need I explain... (and did she really expect me to agree/disagree/share that with her?)
And another comment about a baby with Down syndrome who was staying by us - "oh, I never saw them as babies before" - them??? This baby is a pure, beautiful, neshama, and a child - not part of a group of odd "them"!
Best comment:
I am finding that hard to remember, not because there weren't any - there were many- but because they were the non-dramatic ones. Nothing special about those comments, and the person saying them was not trying too hard to be my Savior - they were honest, simple, and supportive without big words. No dramas. Mostly things like "oh, that must be so difficult for you", or "I hear" or "so what can I do to help". This is when I learned who my true friends are. (That is NOT to say that if someone blurted the wrong thing - I immediately erased them from my "friends list"! - BUT I did learn who is listening to me and trying to feel ME - and who is busy trying to hear HERSELF when reacting to me...)
My advice/thoughts on the matter -
Most worst comments are made without thinking. If you are truly aware of the other's feelings, and you try to say the right thing - even if you end up saying the "wrong" thing, people will, most of the time, appreciate your trying. Try to open a venue for them to talk, to know that you are there to listen and lend a shoulder, while still giving them a way out. A vague "how is the baby" is a lot better than saying "so what exactly are the doctors saying". That way, you give them the option of simply saying "BH he's fine/better/holding up, thank you" if they are not interested in saying more - but they know that you are listening if they want to share more. Try to read others' cues - are they interested in discussing this with you? Do they look uncomfortable with the conversation? If they do - DROP it. Change the topic. If they want to talk about it - they will find the way. It is SO important to let them take the lead. But at the same time, try avoiding looking too uncomfortable yourself. Just try to be natural, supportive, and understanding without prying. Always use questions/comments that can be taken both ways they'd like.
Most worst comments are made without thinking. If you are truly aware of the other's feelings, and you try to say the right thing - even if you end up saying the "wrong" thing, people will, most of the time, appreciate your trying. Try to open a venue for them to talk, to know that you are there to listen and lend a shoulder, while still giving them a way out. A vague "how is the baby" is a lot better than saying "so what exactly are the doctors saying". That way, you give them the option of simply saying "BH he's fine/better/holding up, thank you" if they are not interested in saying more - but they know that you are listening if they want to share more. Try to read others' cues - are they interested in discussing this with you? Do they look uncomfortable with the conversation? If they do - DROP it. Change the topic. If they want to talk about it - they will find the way. It is SO important to let them take the lead. But at the same time, try avoiding looking too uncomfortable yourself. Just try to be natural, supportive, and understanding without prying. Always use questions/comments that can be taken both ways they'd like.
Another important point is to try and remember that on the one hand, these people, and their baby - are not DEFINED by the problem at all (See http://www.beineinu.org/chizuk/parents-speak/1080-part-of-the-rest-of-you) but at the same time - at the first, initial stage after the diagnosis, they ARE most likely consumed by this new hurdle in their life. Be understanding. Don't demand that they remember every simcha of yours, do everything just right and be just so - give them a break (but please don't make too much noise about that!), let them quietly pick up the pieces of their lives so that they can join the rest of the world again."
P.D.D. Shares:
My son was diagnosed with a form of autism at the tender age of 20 months. I tried to keep it a secret but it leaked out when he was about two. I can't say I got a single good comment. Most of the comments ranged from : "What caused it?" "Did you give him the MMR shot?" "Is it curable?" "What do the doctors say?" etc etc. Not a word of encouragement, really - but there isn't really anything positive to say to something this devastating. I even had relatives berate for me for being so negative, citing stories of mothers struggling with young children with cancer and how my situation wasn't so terrible- "He'll outgrow it." The worst comment ever? Some relatives just kept reminding me to spend more time with him, and the "more I'll put into him the more I'll get out of him." Yes, it ain't easy nor fun.
I have to add, that the only positive comments I received were from other mothers with special-needs kids, when they had resources and ideas for me, especially the one who said "I know what it's like to run around town with your child from one therapist to the other." She was a balm to my soul.