There are places I remember

We visited the pediatrician yesterday for the gazillionth time; Max was sick. (If only doctors' offices offered Frequent Fever Miles!) Turns out Max had strep throat, but you wouldn't have known it to look at him. He ran around the office like he owned the place, charming the nurses into finding purple stickers for him and letting him try a stethoscope, and playing with various toys.

The waiting room has one of those wooden bead mazes. When Max was little, he wasn't able to manipulate the beads. He'd try so hard but the cerebral palsy had done a number on his fingers and he couldn't grasp any of them. I dreaded that waiting room because all the other kids would be flinging beads around that maze, but not Max. Now when we're there and Max pinches beads between his two fingers and zooms them around, I smile like a loon. It's one of those see-how-far-he's-come moments.

When you're parent to a kid with special needs, you can have a very different perspective on the most mundane events, places and activities. So many of them are filled with memories, bad and good. The ghosts of the special needs past constantly meet the miracles of the present.

I pass the house in our neighborhood where in summer early evenings our babysitter would wait with six-month-old Max for me when I walked home from the train and I'd break into a run when I saw them and bend down to look at Max in his stroller and he'd smile but he wasn't able to make eye contact because the stroke he'd had at birth had impaired the development of his vision and I'd desperately say "Max! Max! MAX!" but he still wouldn't look at me and my heart would sink because I had a baby who couldn't even look his mother in the eye amongst his many other delays—and I am very grateful that he is able to see me now.

I go to the restaurant where Baby Max couldn't sit up in a highchair because his muscles were weak and Dave held him as I fed him—and I am very grateful for how strong Max's body has grown.

I drive past the hospital where Max stayed for three nights when, at 15 months old, he had a grand mal seizure so bad that the paramedics couldn't stop it and I rode to the hospital in the ambulance with Max violently shaking and finally a doctor at the hospital got it under control—and I am very grateful that the medication has kept the seizures at bay.

I walk by the building in town where Max went to Music Together and he'd sit in my lap as the other toddlers jumped and danced and ran around the room—and I am very grateful for how well Max walks now.

I clean the glass of a picture frame that hangs in our stairwell, the one with three-year-old Max in an argyle vest with his hair combed neatly to the side for which the sweet photographer at The Picture People told Max "Say cheese!" when he wasn't smiling and I said "He can't talk" and the tears welled up—and I am very grateful for the words Max has.

I grab coffee at the Starbucks where I was sitting with Max one morning when he was five and feeding him pieces of muffin and a woman at the next table leaned over and said, "I am an occupational therapist and I work with kids like him, does he have cerebral palsy?" and I said "Yes" and she told me how cute he was and then added, kindly, "I know it's easier to feed him but you should work on letting him do it himself" and I said "You're right, I will"—and I am very grateful that Max can now feed himself.

I notice the guy on the train who, nine years ago, bumped into me and spilled a little coffee on my coat as I commuted to work on my first day back after maternity leave and I glared at him and screeched "WATCH WHERE YOU'RE GOING!" because I was a total wreck of a woman and what I really wanted to screech to the world was "MY BABY HAD A STROKE AND I AM LEAVING HIM AND RETURNING TO WORK AS IF EVERYTHING IS OK BUT EVERYTHING IS THE OPPOSITE OF OK AND HE HAS BRAIN DAMAGE AND HE MAY NEVER WALK OR TALK"—and I am very grateful for how far I've come. 

Getting people to see the ability instead of the disability

"Wow, he can dance?"

That's a 10-year-old talking who stopped by the other day; she lives in our neighborhood and came over to say hi to the kids. I'd told her that Max was in the family room rocking out to "You Might Think I'm Crazy" from Cars 2, as he loves to do.

"Yes, he can dance and he's got moves!" I answered, and brought her in so she could see for herself (and Max could show off, which he did).

It's the sort of thing that happens regularly, a kid or adult truly surprised by Max's abilities or even his personality.

"Oh, wow, he can read words?"

"It's so cool he has a sense of humor!"

"That's great that he can tell you what he wants for lunch!"

At times, it's painfully clear just how low people's expectations are of Max—especially when it's from people who know him, less so from people who don't. Last night, I went to a book club meeting. It was my second time there, and I mentioned that Max has cerebral palsy. Another mom said she knew a kid with CP who had been involved in a bike training program and offered to get me info. I said yes, because I thought maybe the program had other sports training, and then I mentioned that Max had a bike he rides really well. "Oh! So he can already ride a bike! That's incredible!" she said, and I heard the amazement in her voice and I understood. Before I had a child with cerebral palsy, I didn't know about the wide range of abilities you can have with CP.

This is one of the toughest things about raising a child with special needs: Getting people to see our kids abilities and possibilities, rather than just seeing their challenges. There are many stereotypes, preconceived ideas and doubts to push past. People have their special needs goggles on, the ones that make them see only the special needs and not the kid. 

My son has his challenges, but sometimes his greatest handicap is overcoming people's dubious perceptions of his abilities. It's as if he's disabled twice—first by his physical and cognitive disabilities and then, by the way people underestimate him. Max and I have much to prove to the world about his strengths, his talents and his general awesomeness.

This is one reason I have an over-the-top reaction when parents of kids with special needs refer to them as not "normal." Max and children like him have enough to overcome in this world. As parents, I think we should talk our kids up as best we can. That's not to say we shouldn't mourn or despair; we all do, it's part of the road we travel. But our kids deserve for us to be their best spokespeople—their spokesmoms and spokesdads, you could say. And so I am there to gush about Max's growing reading skills, his mastery of the iPad, his amazing memory and, oh yes, his dance moves. To help people see what he can do, rather than what he can't.

I do this because I'm his mom, of course, but also because Max deserves it. He's amazing not only because he is a kid who has beaten odds or surpassed expectations, but because he's got awesome abilities in his own right—just like any kid.