Top 10 Things NOT to Say

Top 10 things not to say to moms of children with special needs…and what I’m really thinking when you do.
I wrote this several years ago, but I can't think of a better first post!

1. “I don’t know how you do it.” No, you really don’t. And I really don’t know either, but I wasn’t given much of a choice. I’m a mom doing mom things. Wait - did I miss an opt-out checkbox somewhere? Figures.
2. “You shouldn’t worry. Some kids are just late talkers.” Well, that’s good for them and perhaps true for some. But my daughter is not “just a late talker” – she has autism. I’ll be lucky if she talks at all. So, I WILL worry and I will not take your advice to "wait and see."
3. “I’m so tired. My son was up all night last night.” Just last night? Really? He actually sleeps through all the other nights? Cool.
4. “Our road trip was a disaster. My daughter didn’t stop talking the whole way there.” Wow, you just described a dream come true for my daughter. Of course, perhaps your child has an obsession with racecars and manages to tie every discussion back to racecars, drilling you on the most arcane details about racecars that no 6-year-old – let alone 36-year-old -- should know unless they’re employed by NASCAR. In that case, I completely understand. Too much talking.
5. “You’re so lucky you can park there. I had to park a mile away.” Yes, I’m fortunate to have a disabled tag on my car. Jealous are ya?
6. “We’ve been waiting in this line for an hour, and you get to flash some pass and step right onto Snow White’s Scary Adventure? Your kids look perfectly fine. That’s not really fair." Sorry I forgot my diagnoses signage today. You're 100 percent correct that this is not fair. I have two kids with special needs who couldn’t stand still in line for four minutes even if Willy Wonka’s chocolate factory was on the other side. Do you really want to trade places?
7. “We’re so over-programmed schlepping to soccer, art, dance… We really need to cut a couple of activities out next quarter.” Great idea! Me too. Help me decide: Should it be OT? PT? Speech? The neurologist? Psychiatrist? Social Skills Group? Which one do you think we should cancel?
8. “You really must be special to be blessed in this way.” Come on. Really? THIS is the trophy?
9. “I haven’t heard from you in awhile. You didn’t even return my call!” My friend, on my best days I can barely remember where the phone is, let alone find five waking minutes to use it. And you know what, please understand that if I actually find a few minutes amid the mounds of paperwork, insurance appeals, appointments, work, therapy and actually spending a few quality minutes with my family, I’m more likely to crash on the couch than pick up the phone to detail my ridiculous life. But please keep calling - minus the guilt trips. I really do need you.
10. “You probably don’t want to hear about my kids anymore. It must be hard listening to ‘normal’ kid talk.” Well, yes, it’s very hard, and I’m sad that my child will face challenges more difficult than not getting the lead in the school play or not eating his vegetables. However, that doesn’t make me less happy for you and your children. You might be surprised to hear that most of the time, I don't compare at all. Your kids are like alien species to me. I promise you that whatever you're telling me, I'm simply awestruck by their superpowers. And by the way ..."normal?"

I believe we all face challenges of some sort; however, it’s relative. My struggles are no more important than yours - and probably easier than many. However, if I seem unsympathetic when you tell me how hard it was watching your baby get a flu shot or your agony in sending off your toddler to get ear tubes, I’m not belittling your pain. I’m only hoping that your threshold never has to expand to accommodate waiting outside the pediatric OR during 20-plus brain surgeries … or the unspeakable fear of monitoring your child’s cerebral spinal fluid output in a bag for three days … or watching your other child struggle to breathe after a colonoscopy. If you see tears, I’m probably just thinking of how to respond to my inquisitive son, whose questions are never so simple as “why is the sky blue,” but more like “why am I always ‘it’ when we play tag,” and “when will all these scars go away?” Despite all that, I need your stories. I don’t want you to temper your joy around me. There are many reasons for that, but here's one you probably don't know: It reminds me that I really do have something you don’t. As happy as you are when your typical (not “normal" please) toddler takes her first step or when the number of words your son knows matches or exceeds the number listed on that dreadful developmental milestone chart, that’s NOTHING compared to the joy I will feel the eventual day my daughter puts together two words. Or the complete relief and victory I felt when my son slept through the night for the first time at age 5. We celebrate every little success, every positive trial, and every smile.

And you know what? For that joy, for that perspective, for those emotional highs which unfortunately can only be recognized after emotional lows, I guess I am somewhat blessed.

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