4 Things This Special Needs Parent Really Doesn't Mind if You Say

One of my favorite FB posts says something to the effect of “The parents of special needs children are often more unpredictable than their kids; be careful with your words."  Amen!  Everything that can be said with hit each one of us differently.  This makes it really tough for the rest of the world to know what to say to us. No matter what gets said there is somebody who is going to be offended and somebody who will love you for saying it.   This really hit home for me recently when I read an article in the Washington Post  entitled 4 Things Parents of Kids with Special Needs Wish You Wouldn’t Say. There are several of these types of articles in various publications and the cyberworld.  (Just Google 'things not to say to a special needs parent' and you’ll see many come up.)  I almost always read them and almost every time I think “I really only agree with 50% of what is written here," but I guess if other special needs parents didn’t feel that way the article wouldn’t have gone viral.  I’m not writing this to put down the person who wrote the Washington Post piece.  Her feelings are as valid as anyone else’s feelings. I want to point out that she is only one special needs parent and so am I. I really don’t mind if anyone says one of these things to me.  

So here is my take on people’s common responses to news of an autism diagnosis.

“I’m sorry.” Okay, I admit this phrase has made me bristle a little and I have been tempted to respond with “Why, what did you do?”  But when I think about it from another person’s perspective, what are they supposed to say? “Oh that’s great! ? An autism Diagnosis is what every parent dreams of.”  They are not saying “I’m sorry that your child is so horrible.”  They are saying  “I’m sorry that things are likely to be more difficult for her and your family.”  Quite frankly, that’s true.  I was also sorry to hear about her autism diagnosis, but that never meant I didn’t love the qualities that my daughter has.   Hopefully, the same is true for those around her.

Lately, I hear a lot of people respond  to the autism diagnosis with “That’s okay,” and I think, ‘I know it’s okay, I’m just explaining why she is stimming on the zipper of your purse so you don’t think she is going to lift your wallet. ' But again, I have to ask myself, ‘what do you want people to say?’ They don’t know each person’s perspective on autism and there really is no perfect response for everyone.   “That’s okay” seems pretty reasonable under the circumstances.

“Wow, you’d never know it to look at her!”   In her earlier years, I heard this fairly often, and I just acknowledge that it was true – you wouldn’t know.  If they knew her better, they would know, but they didn’t live with her and by looking they weren’t able to guess.  Quite honestly, I miss hearing that, because I don’t hear it anymore.  I hear  “Yes, I know.  I could tell.”  So for those of you that are annoyed by “you’d never know to look at her.”   Would you really rather hear “Yes, I know.  I could tell’?

“All kids do that/struggle with that.”  Okay, this one makes me want to roll my eyes.    Of course, this is just a matter of a lack of understanding, but maybe we should see it as a teachable moment.  If we respond with, “I know many kids have some difficulties, but when autism is in the mix the struggle is longer and more intense,”  that may help people understand.  They still may not really get it, but we have to teach with baby steps.

“I don’t know how you do it.”  The other day I was talking to my neighbor.  She works different shifts, around the clock that change every 6 weeks.  Without thinking I said “I don’t know how you do it.”  Of course, I know how she does it.  She recruits family members and neighbors to help with her son; she often sleeps during the day with the help of melatonin or medication and she trudges forward aware that her job pays well and she needs the money.   So I know how she does it.  I guess I was just saying that I respect the hard work and I admire her stamina.  That’s probably all that people are saying to us “ I respect the hard work and I admire your stamina.” They are just looking for an informal tone that means the same thing.  Quite honestly, I appreciate that.  I want people to recognize that this is hard and it takes a hell of a lot of work.   Many people say “Any parent would do the same thing,” but I don’t think this is true.   Often a parent walks away when the going gets tough and its okay to recognize those that  make sacrifices and are committed to their kids.

We all have different things we don’t want to hear and things that make us feel good.  To be honest, I could write a long list of things that people say regarding autism that totally piss me off and half the time they are either said by other special needs parents or people with autism themselves.  Does that mean people shouldn't say those things?  No!  That just means I’m human and a lot of things bug me.  Maybe, special needs parents need to recognize that they don’t speak for everyone that identifies him/her self as a special needs parent.   There isn’t ‘special needs parents thinking’ any more than there is ‘blacks thinking’ or “American thinking” or ‘autistic thinking’.   We’re all individuals with our own perspective. That's why there is outrage when anyone makes a blanket statement whether it's Autism Speaks or Jenny McCarthy or Ari Ne'eman.   If each and every one of us made lists about what people shouldn’t say, there may not be anything left to talk about.  People won’t talk to us about our children at all, for fear of saying the wrong thing.  Maybe we should cut people a little slack and just thank those that want to learn more and be part of our children’s lives.  None of us has the perfect thing to say 100% of the time.