Dialogue: what not to say – and what TO say – to special needs parents

This is day 30 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. 

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I had originally planned to entitle this post “What Not To Say To a Special Needs Parent.” But I believe that, as well-meaning as such a title might be, the intent behind what we are trying to do with this series might get lost.

We have taken a good long look at what community looks like – can look like – both good and bad, from both “sides” of the table. And the last thing that we want is for special needs families to become MORE isolated because non-special needs families simply don’t know what to say any more, how not to offend, what to do.

So what I would like to do with this post is share what some special needs parents have to say in regard to dialogue and communication. What things they don’t like to hear, and what things they do! This isn’t meant to be a list of “no-no’s,” but rather a helpful tool in engaging conversation all the way around.

From Katie Emanuel:

I personally don’t like when people say “We’ve all been there.” Or “My son throws tantrums too.” Having a child with autism and/or behavioral challenges is not the same as having a two year old throwing a tantrum. Or when people offer advice on how to help with “tantrums” who have neurotypical kids.

What I prefer is for friends simply to offer prayers, encouragement, and support. Such as, “What you are going through is so tough. Know that you are loved and prayed for. You are an amazing mom.” Or “I’m here for you any time you want to vent or someone to just listen.”

From Melissa:

I get upset when someone downplays what I go through by saying “I know how you feel.” No.. you don’t. You have never had your 6 year old child hospitalized for suicidal thoughts. I promise you have not been there, nor do you worry every day of your life that one day your child will take their own life if you do or say anything wrong.

You also don’t know what it’s like to spend every waking moment of your life planning for every possible thing that could set your child off. From buying the right kind of socks that won’t bother her feet, to planning every single solitary aspect of every day and making sure your child is aware ahead of time of any and every thing. Most parents have the luxury of just doing things how they want it done and the child has to accept it.

I guess I just wish they would not say anything at all other than maybe, “I’m sorry you’re going through this, I’m here for you.”

Another thing that I truly dislike hearing is “I’m sure she’ll grow out of this.” No, I’m sorry, you cannot grow out of BiPolar and OCD. You may learn to cope with it better, internalize it more, but you do not grow out of it. They could say instead, “I hope that she’s able to find the right coping skills to lead a positive life and not suffer the way she does now.”

From Meredith Dangel (autism mom)

You’re a great mom for him. Keep it up.

I’m happy to know Henry.

Henry seems really happy and _____ (fill in an appropriate, positive adjective).

I’m here to listen if you need me.

Are you and Keith ok?

Can I cook you a meal sometime?

What can I do to help?

I love you.

From Beth Clay:

One of the things that I just really like to see is when people attempt to treat our son like any other of our children. I know it is hard sometimes, but it warms my heart when they at least make the attempt to engage him. I am not too easily offended by people who truly have not clue…it is nice when people make a genuine effort.

From Shelly Richardson:

I always get frustrated when people say, “I understand – my son/daughter went through that through tantrums like you wouldn’t believe… she will outgrow it. She is just immature.” But my all time biggest thing that gets right under my skin when I tell someone my oldest daughter has autism and they say, “Really? She doesn’t look like she has autism.” Just what does a child with autism look like?

From Sara Fleming:

The hardest thing for me to deal with is flat out denial. I cannot count the number of people who have said, “Well he looks healthy as a horse!” or “He is the just the picture of health!” or “I can’t believe he’s not skinnier; I thought kids with feeding tubes are really thin!” or “He doesn’t look like he’s got autism!” etc, etc, etc… I think most of it is from lack of education and ignorance.

Some people care and mean well, but don’t know what to say. Other times people just don’t want to understand because they don’t want to deal with it. I had a friend tell me flat out that it was hard for her to listen to me talk about my child because she was glad it wasn’t her children. People would rather live their lives in their own little bubble and pretend special needs don’t exist.

I wish others would sometimes not say anything at all, but instead just give me a big hug and say, “You’re doing a good job!” I don’t want people to feel sorry for me or throw me a pity party. I just want Stephen to be accepted, for people to understand that it is hard, and for people to care. I don’t expect people to “get it” because you cannot truly understand unless you have walked this path. I didn’t understand anything about special needs until I had a child who has special needs, and that’s the truth.

From Sarah Hawk:

Things like “What’s wrong with him?” to “He’s fine! He doesn’t have any needs – you’re making it up!” I have gotten it all. It is not supportive to tell me he has no challenges, it is not acceptable to call my son wrong. Supportive comments are things like, “He will meet that development when he can,” or “I can see the changes in him, he is doing very well.” If you want to know the diagnosis or why he’s different, I always recommend they start with a hello first, then they can follow up with, “I see you have a cane, or you have very white hair. What’s his diagnosis?” Put the person before the diagnosis or disability, and it’s always more supportive and conducive to getting answers.

From Emilee Roberts:

When a child is having a sensory meltdown saying things like, “He needs to learn that behavior is not OK,” or “He just needs to be spanked,” along with things like, “Well, I don’t want to be around a screaming kid,” is pretty upsetting – especially when it’s a family member.

From Chantale:

I know it’s human nature to want to console but sometimes hearing “everything is going to be fine” when it really isn’t, hurts. Saying something like “I’m here to listen” or “How can I help” instead is much more helpful.

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Related posts from other bloggers on positive communication:

10 Questions That are ok to Ask Autism Parents

Five Things you should NEVER say to the Mother of a Child With Disabilities or a Life Threatening Brain Tumor!

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I would love to hear from the audience on this one. What would you add to some of these comments? Do you agree, or disagree?