Autism Understanding & Acceptance 2013, Day 28: What not to say – and what to say

During these last years, people have said many things to us to help, sustain, uplift and support us. All these statements come from loving hearts and have been made with only the best intentions. In my new career, I have had the honor to work with fellow moms of children with special needs and speak with hundreds of parents, grandparents, and caregivers all seeking guidance on how to raise their beloved child/grandchild. I have therefore, over the years, been able to hear these caregivers process things people have said to them, and I’ve processed through them myself. I thought that since I have your attention, I might bring some of these reactions to you for your consideration.

“God chose you for this.” Well, I’ve already written about that response. I believe my eloquent response mentioned something about requesting that God kiss my ass. Being told that God chose you for this just causes more downward pressure, more burden, and the implication that if we are feeling low that we are not only letting our child down, but letting God down too. That’s just what we need. When a parent of a child with special needs is feeling low, this does not help. We are already burdened, stressed, worried & probably feeling horribly inadequate. AND another thing…it also implies that God deliberately chooses to create children with disabilities, some of them living in pain or unable to voice their pain…and I’m sorry if my beliefs don’t line up with yours, but my God doesn’t do that crap.

“You’re so strong…I don’t know how you do it. I could never do it myself!” Well, we’re exhausted. Not feeling so strong. What is our choice? Sit back & do nothing? No, we either have to rise to the occasion or fail our child, period. It is true that we have to fight for just about everything a typical child gets handed to them: proper medical care, a Free and Appropriate Education, recreation opportunities, being part of a community, etc, etc, etc. And I’ve got a little secret for you…WE ARE EXACTLY LIKE YOU. We just got more than we bargained for. And I wouldn’t change my life or Thomas for ANYTHING, and I mean that. We don’t feel strong all the time and we get tired of always having to be strong and the thought that we are going to have to be strong for the rest of our lives is a bit overwhelming. And…realize that by saying you could never do it, you are really selling YOURSELF short.

“God doesn’t give you more than you can handle”. What a bunch of crap. Really. This one is one of my least favorites. Some parents have WAY more than they can handle. Trust me. The statement is categorically untrue. And saying it minimizes the trauma & stress of the person to whom you are saying it. Saying this to a parent who is near the end of their rope only accomplishes one thing: it makes the person saying it feel better. Because being on the receiving end of that statement when you aren’t “handling it” makes a person feel like they are FAILING COMPLETELY, even more than they were before they opened up to you about something shitty going on. This statement also completely separates the person saying it from the person hearing it. The underlying message is: “Thank God I am not you.” And my personal favorite response to this statement that I heard at my support group: “Well, I hope that God can help you handle a broken nose, because that’s what you’re going to get for saying that to me.”

Okay, I’ve told you what not to say, or at least what to consider if you are about to make one of these statements to an overwhelmed parent of a child w/ special needs. So what should you say? Here are some suggestions:

• Instead of “God chose you for this,” how about “God is with you every step of the way.” Even better: “God will be with you, and so will I.” Or, in honor of that awesome older mom that helped me: “Look to the light. There will always be darkness. Look toward the light.”

• Instead of ‘You’re so strong…”, how about, “It must get tiring/overwhelming having to handle all of this. Tell me more. Do you have time for coffee/lunch/drinks/a manicure?” or “Can I bring a Netflix & brownies over tonight after your kid goes to bed?”

• Instead of “God doesn’t give you more than you can handle” when a mom tells you about an overwhelming, unjust, or infuriating situation, how about “That really stinks. And to be honest, I’m not sure what to say to you right now. I wish I did. But I’m here and I’m listening, and you’ve got a terrific kid I’d like to get to know.”

I know it is scary not knowing what to say to us. I’d rather that you say something awkward than completely dismiss me from your life because you don’t know what to do. And please believe me when I say that the “things not to say” are always said with the best intentions. I just wanted to take the opportunity with this audience to give you some food for thought.