What's WRONG with him?

Aside from the jokes we make within our family as coping mechanisms, any form of "What's WRONG with him/her?" causes me to cringe.  There's a strong possibility it even induces visible smoke to flow from my ears as my face turns tomato-red.  There's also a high probability I may or may not (have) use(d) many tactless comebacks for nosey strangers who ask such questions.  He has autism.  What's wrong with you?  Hey, they're the ones who ask.

It's been several years, yet there's an old scenario which still plays over and over in my head: A family member who was visiting with us loudly asked Shawn that very question, referring to another child at church, within earshot of the child's mom (and many others).  At the time, Shawn was shocked into silence.  We were absolutely mortified.  For weeks afterward I guiltily contemplated how to handle it with the other mom, finally settling on letting it go and hoping maybe the mom didn't hear after all.  I think it still takes up space in my brain because I kick myself for not dealing with our family member right then and there, and because I know how that particular question makes me feel.  We did tackle it later that day with our family member, carefully explaining all of the following...

Please, for the ever-loving love, don't ever ask a parent, caregiver, anyone else related to caring for the child, any family member--and especially not the child--what is wrong with the child.  There are countlessly better ways to handle what can be such a sensitive topic.  I learned much of this while still in college, working as a child advocate and in-home educator for children with special needs.  The rest of it, I've picked up over the years mom to my own kids with special needs.  Yes, God does indeed have a sense of humor!  Also, perhaps most importantly, please bear in mind there is nothing wrong with the child.  I personally hate (yep, that's a strong word for a strong feeling) the idea of allowing my kids to believe they are sick or there is something wrong with them.  Neither are they disabled.  I also hate the idea of the general public mistakenly believing this about my kids or anyone else's.  Their brains simply (well, complexly) work differently.  I appreciate this is a delicate matter for many, and respectfully understand other parents feel differently than I do.

One caveat (I'm sure I'll think of others later, so just hang on to that thought)--before you venture into any sort of conversation concerning another parent's child, please please PLEASE be absolutely certain the parent/other person is on the same page as you, i.e., fully acknowledging (the need for) her child's diagnoses.  I'll never forget when a friend asked me if Noah's doctor would consider increasing his meds.  I was so confused!  What doctor??  And even more--what meds?!?!!?  

Begin the chat by asking the parent to tell you about her child.  Most of us are willing to help educate others and provide examples of various diagnoses, behaviors, strategies, therapies, specialists, and so on.  And like most parents, we typically enjoy talking about our kids!  One of my good friends asks questions, admitting she knew next to nothing about any of it before meeting us.  Honestly?  It's one of my favorite things about her.  A good method to further develop the conversation is to ask specifically about her child's diagnoses.  Both of these are excellent ways to learn not only about the child, but about the parent.  A parent's passion for her child comes across as she talks about him!  Ask about our experiences, listening with your heart.  Remember, you want an open, friendly, genuine heart to heart, not an inquisition.  Please also bear in mind we are usually not looking for advice or your cousin's uncle's goldfish's experience.  We just want someone who will listen and wants to learn. 

Don't be afraid to ask the child either (again, keeping in mind only if the child is on the same page as you--and you have permission from the parents).  Most of us parents make efforts to fully educate our children so they understand what's going on inside their brains.  My own kids can answer questions about autism, ADHD, SPD, anxiety, therapies, meds and specialists in general, as well as how they all pertain specifically to them (my personal favorite is Ezra explaining perseveration... hehehe).  

Consideration and compassion really are key.  If it's something you wouldn't want said to you or to your child or about you or your child--it's just best to not say it yourself, you know?