Thursday, May 23, 2013


I realized something today as I was taking Bo to his ENT appointment:
I am most comfortable with my boys with special needs when I am walking the halls of our local children's hospital.  
I smile at other parents and they smile back in a comfortable camaraderie. Staff members wave back at the boys like they are genuinely glad they are part of the same world. There are no looks of pity, only empathy or even better, delight at how cute they are.

When I see people glance in the stroller, I don't worry whether or not Bo has his tongue out. When Eon loudly verbalizes a string of syllables with no actual words attached, I don't instantly shush him. When we're on the elevator and someone's attempt to engage Bo falls flat, I don't rush to make excuses for him. 

I don't feel the need to normalize them when we're in the safety of that setting.

And it makes me sad that I feel the need to normalize them at all. 

But I do. 

I've learned, as a special needs mom, that people are more accepting of my kids if I treat them with absolute delight even if they are not being particularly delightful. I've learned to pretend like I'm having a ball even when I'm ready to pull out my hair.

And so I scoop up Eon and tickle him when he bolts down the aisle of the grocery store for the third time today, even though my back is killing me and I'll pay for it later. I kiss Bo on the cheek so that he'll smile instead of stare suspiciously at someone who is trying to talk to him. 

When Eon shakes off my hand and races ahead to the elevator, I smile and call out, "Press the down button, please," while desperately hoping he actually stops at the elevator this time. When Bo gnaws on the arm of the chair he's sitting in, I calmly tap him on the head and say, "No, no, Bud. Here, let's read this book," as I pull him onto my lap with a big smile (because there is no way he's going to stop unless I remove him from the temptation.) 

I make a crack about women drivers when the wheel sticks on the stroller my son has to ride in because, at three and a half years old, he's still not a proficient walker. I smile when I retrieve the four hundredth object he's thrown today, and comment, "Wow! You'll be a great ball player, someday!"

Most of the time I do it, in part, so strangers will have a positive experience with a child with special needs. Maybe our interaction will help them be more accepting of someone else in the future.

In part, I do it so people can get a glimpse of what I see when I look at these boys...children of worth and incalculable value with unique personalities, full of fun and mischief.  

But, I also do it because I am filled with foolish pride and cannot stand the looks of pity and even scorn I receive when I behave as if I am as harried as I feel. I've learned that when you get frustrated with your typical kids in public, people don't pay any attention. But, if you get frustrated with your kids with special needs, people give you a knowing look that seems to say, "You poor dear. Your life must be so hard." I loathe that look because, while my life is hard in that moment, that moment is just a tiny part of the remarkably satisfying whole. 

So I pretend.

And I normalize them to others by my response to them.

But at the children's hospital, there is no need to do this. Almost everyone there knows my children are precious in spite of their special needs, because their children are precious too, in spite of the medical issues or disabilities they have. The staff don't mind my children's quirks or my frustration with them. They've seen it all and choose to come to work everyday to see it all again because they love kids...of all abilities.

I am home there. Different is normal in those halls. I am among my people and it is refreshing.

And that is a little sad to me.


  1. I can totally relate to this Tara! I too find myself acting the same way in public, because I can't stand the thought of someone thinking my kid is a handful solely based on the fact that she has Down syndrome. I don't want her to be judged by the fact that she has different abilities, but just by the fact that she is a curious, limit pushing,ornery little kid. I find myself always feeling like I am being judged when things are a little crazy, and I don't know why?

    1. "...but just by the fact that she is a curious, limit pushing, ornery little kid." Exactly!

  2. We're new to DS and haven't yet had any issues with our newly adopted little one, but I've been doing this for years because we have a large family. I feel that I always have to smile and be calm because we have so many little ones and we've added a new one.

    1. Oh, yes, Sabrina! I've been doing it because of the big family for years, too! Ugh. I still find myself driving the 15-passenger van with a big smile plastered on my face. :)

    2. I am the oldest of one of "those" families... And learned to drive in one of those vans. Is it weird that I loved it? I am looking forward to having enough kids to justify a weird vehicle again.