The Special Needs Blogger Weekend Link-up: The calm before the holiday storm

It's that time of year when the kids are in the school groove (more or less), it's deliciously crisp but not cold outside, and you're just starting to think about Thanksgiving food—and not yet freaking out about getting all the holiday shopping done. You have plenty of time to post. Do it!

What to do if you're new here

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Why It's Good I Didn't Know Then What I Know Now

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

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.

Special needs parenting: When your kid bugs people

A scene from our flight to Florida (picture a completely filled plane):

Max is in the window seat, Dave is next to him, then Sabrina; I am in the row across from them. Suddenly, I notice that Max is repeatedly and rhythmically kicking the seat in front of him. Hard. Kick, kick, kick, kick. Kick, kick, kick, kick.

Max likes to do this sort of thing when given the right kicking opportunity. He has this little table in his room and one of his favorite activities is to sit there, lift his knees and bang it up and down. I think he just likes the the feel of it. "It's totally normal," said our über-sane pediatric neurologist, when I asked. "Haven't you ever seen a boy sitting on a bench and jiggling his foot?" I suspect that Max also gets a kick out of being naughty; as I've noted, he is no angel, like any other kid his age.

Only now we're on a plane. The three people in the row in front have all turned around to see what is going on; they don't notice me observing them. The elderly guy in the end seat is glaring at him.

Dave is sitting there, earplugs in, staring at the TV screen. Oblivious.

Kick, kick, kick, kick.

"Dave," I say.

No response.

"Sabrina, can you poke Daddy for me?" I ask.

She does and when Dave looks up from his TV coma I whisper, "Dave, Max is kicking the seat and it's annoying the people in front of him. Can you get him to stop?!"

Dave shrugs his shoulders. Meaning, what's so wrong (see: Mushball Dave), I'm not sure how to help, and I don't particularly care if it's bugging them.

But I care. Because I'm one of those people who minds having her seat kicked—on planes, in movie theaters, when I'm attending the Academy Awards (OK, not that)—and I know how irksome it feels. I also don't think Max should get away with it. I wouldn't let Sabrina disturb people like that; why should I let Max? I want him to understand what it means to behave yourself in public.

"Talk with him," I tell Dave.

Kick, kick, kick, kick.

"Try holding his legs down," I say.

Max wails.

The elderly guy summons the flight attendant. He gestures at Max and says something to her; she nods and walks way. I'm not sure what her plan is; maybe she falls into the "What's the big deal?" camp.

Kick, kick, kick, kick.

"DAVE!" I hiss-whisper. "Do something! Distract him!"

Dave gives Max his iPhone.

Nope.

Kick, kick, kick, kick.

I am tempted to take Max for a walk only I've learned that can be a dangerous thing, as Max then refuses to sit down again and also has a tendency of barreling into first class where, alas, they do not treat me to a glass to champagne as I scurry after him.

The woman in front of Max turns around. "Here," she says, kindly, and hands back a pad of paper and a pencil.

That helps.

[Repeat scene during return flight home, except nobody reports him and he finally falls asleep.]

Obviously, Dave and I need to do a better job of packing stuff that will better occupy Max (and making sure the iPad is charged, as it ran out of juice). We also need to do a better job of agreeing about Max's public behavior.

Have you been in recent situations in which your child has annoyed others? How have you dealt with it? How has your significant other dealt with it?!


Photo/istock

Sabrina sings Thomas to Max

I mentioned recently that Sabrina's been doing this impression of Sir Topham Hatt that cracks us up, especially Max. She did it all vacation and here she is, caught on tape. I love how she has no clue whatsoever what the song's actual words are.

She was exceptionally nice to Max last week; clearly, there is something in the Florida water.

Max steps out of his comfort zone (and likes it)

This is Max's table setting. It's a perma-fixture on our kitchen table; he wants it there all the time. He keeps a matching purple bowl and plate on his bed. He sleeps with them at night, and makes sure they're aligned just so.

Max likes the familiar. A few weeks ago, we got a new phone and put the answering machine in our bedroom instead of the kitchen, where it had been for years. Max keeps asking us to bring it downstairs, where he feels it belongs. He also likes us to park in corner spots of lots. He likes to sit in corner tables at restaurants. No, actually, he only sits in corner tables at restaurants, and has been known to stare down diners who dare occupy his table. He waves his hand like a little Napoleon, ordering them to move. This is why we keep going to the same local diner on Sundays, where they save the table in the back for us.

Lately, though, Max is breaking out. This week, his school finally sent home the DVD of him at the holiday show I'd been begging to see; I'd missed it because of work and because every other year, he'd run out of the room screaming. Not this year; he beamed and sang "This Little Light of Mine," holding his mini flashlight. And then he took a bow. And I felt like the crappiest mother of the year for not being there.

Max is daring to try other new things, too. Last week, he asked us to move his chair (it's a Keekaroo) and his environmentally-incorrect tableware to a different spot at the table. He's been begging to go inside stores when we drive by, although they used to scare him. He sat at a new table at the restaurant over the weekend. It was a corner one, but still.

Clearly, the progress of our kids can't be measured by reports, charts or tests alone. It can't just be measured by an increasing number of spoken words or an improvement in movement. Progress comes in all shapes and forms—one song, one bow, one new place at a time.

"Mommy! If you don't let me watch TV I'll call the police!"

There are days when you think caring for your kid with special needs takes so much out of you. And then there are days like today, when you're cooped up with the kids because it's a slushy, icy mess outside and suddenly it occurs to you that your child with special needs is actually the easier one of your two. A few choice quotes from a certain five-year-old:

"Your teeth are yellow."

"You are a cranky lady!"

"Waaaaaaaah! I hurt my nose on the window!"

"I'm. Wearing. My. Pajamas. All. Day."

"See if I care!"

"Come on, big boy, let's box!"

"I'm only drinking juice! No more milk!"

"Waaaaaaaah! Max stepped on my toe!"

"I am NOT going to listen to you!"

"Time outs are for babies!"

"My belly hurts! I want pizza with PEPPERONI! It'll make it feel better!"

"Waaaaaaaah! I want to watch TV!"

"Maaaaaa-aaaaaax, you like BLACK! Only BLACK! Max doesn't like purple!"

"I said I want PEPPERONI!"

"You're NOT going to leave me home and go on the Disney Cruise! I know!"

"Waaaaaaaah! Max pulled my hair!"

"I don't like you!"

"Hey, you got a penis!"

"Mommy! If you don't let me watch TV, I'll call the police!"

Max and I are going to be rich and famous!

Oh, OK, so maybe we might just win a contest. I'm a finalist for The Bump Mommy Blog Awards in the "Hottest Mom" category.

Oh, OK, it's the "Special Needs Blog" category. And the competition is fierce; all of the blogs are worthy of recognition. As the saying goes, it's an honor to be nominated. I actually welled up. This is also a welcome distraction from what's sure to be a minor medical drama tomorrow, when Max goes for his ambulatory EEG to check whether he's having absence seizures.

Shameless plug alert, click to vote for me! Just scroll down to the bottom of the page. Voting ends October 19, and I'm pretty sure you can do it as often as you'd like.

Mom, you're going to vote for me, right?


Illustration by Rozana