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On not wanting your child with special needs to look younger than his age

The Lightning McQueen costume arrived in the mail Friday, sent by HalloweenCostumes.com. It was super-cute—that face! Those wheels! That cap! I knew Max would be out of his head with joy when he saw it.

I just a hard time deciding to let him get it.

It all started in September, when we were in a shoe store. Max spied a pair of Lightning McQueen sneakers and instantly fell in love. But they were toddler size. I promised him I'd try to get them on the computer when we got home. As it turns out, hardly any store still carried ones in Max's size.

It was one of those little rude awakenings: most other kids Max's age are no longer into Lightning McQueen.

Finally, I found a pair in his size at Disney. I hesitated, for the same reason I didn't get Max those purple Crocs one summer: I don't want him to stand out from other kids. I don't want him to look babyish. The stuff he does at home that's immature for his age, like watching Mickey Mouse Clubhouse, is one thing. But going public is another; Max needs all the help he can get fitting in with other kids.

Still, I bought the sneakers, and he'll be getting them for his birthday in December.

And then, he told me he wanted to be Lightning McQueen for Halloween. (Again.) He nodded, grinned gleefully and said "YES! YES! YES!" when I showed the outfit to him on HalloweenCostumes.com. The boy wearing it in the picture looked to be about 7.

Once again, I was torn between a car and a hard place.

We've come a long way. Years ago, Max didn't want to get dressed up at all on Halloween. We let him go around our neighborhood in ordinary clothes (something that made one killjoy email me to say was rude, boring and showed a lack of spirit). In recent years, Max has gotten into Halloween. He keeps telling me that he wants to eat all the candy, which is interesting because he usually doesn't have any interest in the stuff. I suspect he's plotting to torment Sabrina, who's quite the candy hoarder.

But a Lightning McQueen costume on a boy who's almost 10? Again, I had to repress that part of me that's fiercely protective of Max, the part that doesn't want kids staring or snickering. I had to squelch the part of me that says this is what Max "should" be into at this age, and accept the reality of what he is into.

I had to let Max be Max. Or, rather, let Max be Lightning McQueen.

And so, he will be roaming our neighborhood in one glorious Lightning McQueen costume next week (along with his beloved purple bucket). And I will be there, too, watching the other kids watch him...but mostly enjoying Max have the time of his life.

Brave (special needs version)

Brave is getting past your fear of the pool. At 9, your body's so much stronger now, your legs able to carry you far on ground and kick-kick-kick in a pool. Your arms, though, are still too stiff to paddle. I've seen that look of terror on your face when you stumble and go under water, though your dad or I are always right there to grab you and lift you up. But you get a surge of confidence from a new tube...  

...and a lift from your sis.

Brave is exploring all the fun a pool has to offer, including dousing your daddy.

Brave is watching your sister go down a slide again and again and getting your nerve up. You wouldn't even go near the slide last year, so wary were you. And now?

Brave is holding your sister's hand and going down together, with Daddy there to catch you at the bottom.

Brave is being bold enough to try it alone. You sit at the top for five minutes, pondering. 

Brave is taking the plunge.

Raising kids with special needs and roller coaster days

About Max and roller coasters

Max has this fascination/fear thing with roller coasters. He's never been on one, but when we're at an amusement park he'll stand and stare at them, mesmerized, then shake his head and say "Nooooooo!" Then I have to say "Not for Max!" to reassure him that we won't be taking him on one.

Me, going up 

Today, we visited Max's physiatrist after his physical therapist at school expressed concern about his hip, and how it might be forcing his right foot to turn inward. The foot that he got serial casted last summer. I talked my way into an a.s.a.p. appointment because I was so concerned. Max's walking is a miracle (I do not use that word lightly) and anything that threatens it is A Big Deal.

Not to worry, the physiatrist said after he examined Max, and I just about swooned with relief. Max's hip looked fine to him, and he said he was walking well. The doc was especially impressed by how far along Max's comprehension had come, and his ability to stay calm—as a toddler, Max wailed his heart out at these appointments.

Score 1 for Max, 0 for cerebral palsy.

Me, going down

We're back home. Max is playing with a toy truck, and I'm filling out an application for long-term care insurance; Dave and I are considering it. It's the usual form mumbo-jumbo. Then I get to a list where I have to make a check if I have one of the following: multiple sclerosis, Parkinson's, Alzheimer's, cerebral palsy. A note in small type below the list says that if I've checked any of the above, I shouldn't continue filing out the form.

At age 9, Max would not eligible for this insurance because he has a condition that the company considers to be as degenerative as Parkinson's and Alzheimer's.

I am sad.

Me, going up

Max asks if I'll take him on the train. He doesn't have school, I'm off from work so sure, why not? We drive to the parking lot, buy round-trip tickets and settle in for a joy ride. "Pardon me, do you mind if I ask whether you like those headphones?" a woman seated behind us asks about the noise-reduction headphones Max has on. Turns out she's a local occupational therapist. I've been on the hunt for a new one for a year. We talk. She's worked with kids who have CP, she mentions some innovative-sounding techniques, she seems really nice.

I'm not a big believer in fate, but I am a big believer in the power of coincidences.

"Max, would you like her to come play with you?" I ask.

Max eyeballs her. "Eee-yah!" he says.

I get her card and we get off the train. I'm excited.

Me, going down

There is a big staircase at the station that'll take us to the other side for the return trip home. A conductor on break glances at the braces on Max's feet and gives him a pitiful look. "Awww, honey," she says. "Do you need an elevator?"

"Actually, he can handle stairs pretty well," I tell her.

I know she only means well, but I can't stand the pity.

Both of us, going up

Max keeps looking down the track for a glimmer of train. Soon enough, he spots it and he squeals. Few things make me feel as good as that squeal. We get on, grab seats and he contentedly stares out the window till we're at our stop. As we get off, a crew person helps Max down. Max gives him a high-five.

The two of us head back to the car, happy.


Roller coaster photo/The Two K's

Special needs parenting rule no. 1: Control yourself first, your child second

For days, I dreaded it. Not some Serious Doctor Appointment. Not a new form of therapy. Not a trip to the dentist. No, I was dreading Max's class trip to a local theater to see a musical production of The Magic School Bus.

Max has never in his life sat through a performance in a theater, not even for the movie Cars 2 (for that, we went to a drive-in and even then he freaked out). And so, I knew he was going to get upset about the play even though for weeks we'd talked about it. And I knew I'd get upset that he was getting upset. These sorts of situations generally leave both of us feeling Not Good.

The day, however, started off with pure, unadulterated glee. When I walked into Max's class, he laughed so hard I thought he'd cry. It's what he does when he's ecstatic. And then, joy of joys, he got to ride a school bus with me sitting beside him and his best friend C in the seat in front of us.  

At the theater, a lot of classes from other schools were milling around the entrance. Max made it into the lobby before he started shaking his head and saying "Noooooooo."

"It'll be fun, Max—Mommy's here!" I said, and I gently tugged him into the theater. Happily, the last two rows were reserved for his school. I grabbed a seat at the end of a row and pulled Max onto my lap. He began to whimper-wail and generally look terrified. I bear-hugged him. For once, I wanted him to watch a real, live play. If he could just see what it was about, maybe he'd like it.

Minutes went by and Max wasn't letting up, no matter what I said. I offered my iPhone to play with. Not interested. As I sat there—tense, upset and feeling like a child abuser—I had an epiphany. I could a) keep getting uptight about the wailing and the general situation; or b) decide that I wasn't going to react to it.

I went with Plan B. If Max continued to wig out after the thing started, we'd head to the lobby. But I couldn't leave before it began because there was no way he'd return to a darkened auditorium. Sitting it out seemed like the best choice.

The minutes passed slooooowly. I thought about lemon cupcakes I wanted to make (I have a thing for cupcake blogs). I held Max tight and pictured myself mixing the batter with the kids. I felt calmer. Max sniffled and looked warily toward the stage.

"Do you want to take him outside?" his teacher asked, right as I was decorating the cupcakes with pale-yellow buttercream frosting. (Disclaimer: I'm a far better baker in my imagination than I am in real life.)

"No," I said, firmly. "I'm going to see what happens when this starts."

"Do you have headphones?" she asked.

At which point it became very clear: I am so the opposite of a perfect parent. Because I'd totally forgotten Max's noise-blocking headphones. (Which actually would have been very effective for me.)

Another kid in his class wasn't using hers and we borrowed them. Very quickly, Max calmed down. Then at last, the lights dimmed and the play started.

Max watched, mesmerized. I spent most of the play watching him and doing a happy dance inside my heart. Once in a while I'd lift up up one side of the headphones so he could hear the music.

 

Max quietly sat through the entire one-hour performance. He walked out with a huge smile on his face.

I was so proud of him.

I was proud of me, too.


istock/TaralynnLawton

What I'd like you to say to my kid with special needs

You and I are at the playground with our kids. 

Perhaps we are sitting on a bench, chatting about the stuff moms talk about when they first meet—school, our ridiculous taxes, the best place to get the kids a haircut, the weather, you know.

My daughter walks up to us and I introduce her to you. Her name is Sabrina, and she's 7.

"Hi," you say. And then maybe you ask how old she is. Or where she goes to school. Or if green is her favorite color, because she's wearing a green shirt. Or what her favorite thing to do at the playground is. Or if she's doing anything special for spring break. Or if she's getting hungry for lunch. Or if she knows what a gorgeous mom she has (OK, maybe you don't really say that but this is my fantasy so bear with me).

My son walks up to us and I introduce him to you. His name is Max, and he's 9.

"Hi," I'd like you to say. And then I'd like you to ask how old he is. Or where he goes to school. Or if purple is his favorite color, because he's wearing a purple shirt. Or what his favorite thing to do at the playground is. Or if he's doing anything special for spring break. Or if he's getting hungry for lunch. Or if he knows what a gorgeous mom he has (see above).

You and I are at the playground and your kid meets my kids.

Your child greets Sabrina.

"Hi," your child says. "Would you like to play?"

Your child greets Max.

"Hi," I'd like her to say. "Would you like to play?"

Do you see?

I want you both to treat my son with cerebral palsy the same way you treat his sister, or any kid.

I know he may sound and walk differently than your child does and yes, he drools. Max will probably need me to help answer some questions. Perhaps you or your child won't understand what he's saying, and I'll translate, or he'll use the speech app on his iPad. I'll have to help him up the jungle gym.

But still, he's a kid. He is not defined by his special needs. Other than the visible differences, at heart he is not so different from your child.

Your child may ask what's up with Max when we're out of earshot. Be straight up: Tell her that his muscles and mouth don't always move the way he'd like them to, but inside he's like any other kid. My son's personality isn't disabled. His desires to play and learn and have fun and down copious amounts of chocolate ice-cream aren't disabled. 

The other day, Max's teacher asked him to share something he wished for.

This is what he came home with.

My son wants to make friends. He'd like to chat with you and your child at the playground. Of course, not all kids with special needs are like this; some are more shy, some have challenges with social interactions.

What I'm saying is, they are all still kids. And they deserve to be treated that way.

Just start with "Hi," and take it from there.

This post was inspired by a commenter on last week's video about the r-word. "What would be the best way to explain Max to my 6-year-old daughter when she takes notice and asks, 'What's going on with that kid?'" she asked. I've written about this a lot; recently, I asked other parents of kids with special needs to weigh in. How parents and kids can interact with kids who have special needs is a question that keeps coming up. And I think it's an important one to keep answering. 

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.

Balancing therapy, life and fun for our kids

"Get him as much therapy as possible. Over-therapy him."

Those are the words of a renowned pediatric neurologist, spoken to Dave and me the week after Max was born. The doctor been called in for a consult; physicians at our hospital had never before treated a baby who had a bilateral stroke at birth.

I remember this doctor staring kindly at me as I scribbled his words. "You remind me of my wife, she's always taking notes," he said. He didn't give us false hope, but he did talk to us about the "plasticity" of baby's brains and how malleable they are.

I took his "over-therapy" words to heart. As a baby, Max had 12 to 15 sessions of therapy every week, seven days a week. Once he aged out of Early Intervention and went to school, we supplemented with private therapies at home; I regularly did battle with the insurance company to cover them.

Therapy has made a world of difference in Max's abilities. He wouldn't be doing as well as he is if it weren't for the smart, resourceful, dedicated, caring and just plain saint-like therapists who have guided both him and me over the years. We've used their suggestions to make therapy a natural part of Max's life, whether it's getting him to reach for a toy to stretch his arms or making a game out of massaging his mouth, to help relax it and encourage the flow of words.

These days, Max gets daily therapy at home after school. He doesn't have much time for other activities, and lately this has weighed on my mind. As Max has gotten older he's been increasingly receptive to trying new things, and I think he needs more balance—a little less formal therapy, a little more other activities. This goes against my instincts and the "over-therapy" mandate seared into my head in the NICU, and I've struggled with it.

This week, I made a move: I signed Max up for three January/February cooking lessons through a local group, and I cancelled three occupational therapy sessions. He'll grasp a spoon or whisk, stir, pick stuff up, and otherwise work his fine-motor skills. And then, of course, there are the social aspects—giving Max the chance to hang with other kids and have fun.

It would also be so awesome if he learned how to cook because I suck at it.

There's a bigger decision I've been mulling over. Last summer, I checked out a day camp with an amazing inclusionary program. Max would be given a "shadow"—his own counselor—and he'd be in a group with so-called typical kids.

Max is in school throughout the summer, and I'd have to pull him out for two weeks for this camp. That's been a huge "Hmmmmmm...." Missing therapy is one thing, but classes are another. Max is making good progress with grasping math concepts and reading. I know two weeks isn't that long, yet he's worked so hard for what he's learned and I'd hate to see him regress.

I emailed the camp director and asked if parents sometimes pull their kids out of school for camp.

"It all depends on their goals," he wrote back.

Dave and I spoke at length.

Our goals are for Max to achieve and succeed to the best of his abilities.

We'd also very much like him to be part of an inclusionary program; he's never tried one before. It could do a lot for his confidence and his sense of place in this world.

But we've also prioritized a new goal for Max: To have fun.

We're going to speak with his school about pulling Max out for camp. Hopefully, they'll agree it's A Good Thing.

Helping kids with special needs make friends

It's late afternoon on a ridiculously warm winter day, and Max is riding his beloved green tractor around our neighborhood. We pass by the front yard with the gigantic trampoline; two kids are bouncing on it. Max has never paid much attention to it before but today, he stops and stares.

"You want to go see the trampoline?" I ask.

"Eeee-yah!" says Max ["YEAH!"].

So he gets off his tractor and we walk over to the trampoline. There's a 12-year-old there who knows Max and a 7-year-old who doesn't.

"Hi!" says Max.

The kids say hi. I ask if it's OK if Max joins them, and when they agree I lift him onto it and hold his hand. Max's balance is excellent on solid ground but he's unsteady on trampolines; jumping isn't yet in his repertoire of movements.

"Max, tell them your name," I say.

"Ax!" says Max.

The younger kid eyes Max warily. "Doesn't he know how to talk?" he asks me.

"Max is talking—he does it in his own way," I say, evenly.

"How old is he?" the kid asks.

"Ask him," I say. "He's right here, he can hear you, and he'd love to talk with you."

"How old are you?" the kid asks Max.

"Eine!" says Max.

"He's nine?" the kids says, dubiously. "He doesn't look nine!"

"Max, you're nine, right?" I ask.

"Eee-yah!" Max says, nodding.

"Some kids don't always look their age," I tell the kid. "You look older than 7!"

"Right," says the older boy. "You do."

"Why does he have stuff coming out of his mouth?" the kid asks. "Why is his mouth always open?"

Max can't answer this one, even if his iPad and speech app were around, so I do.

"It's just the way his mouth is, and because it's open a lot, drool can come out," I say.

I pause. "Hey, Max, tell them what your favorite movie is!" I say.

"Arrrs Oooh!" ["Cars 2!"] he answers.

"I love that movie!" says the older kid.

As the kids bounce silently and Max rides their vibrations, my mind is whirling. I still get unnerved by kids who talk about Max as if he isn't there, and how kids can be taken aback by meeting Max, who happens to be among the more uber-friendly children of the world.

It used to make my heart ache. By this point in Max's life, though, I know that kids are mostly just curious. The younger ones have no filters; they say what they think. But when they're wary, I have to try to move them past their discomfort. I've learned to answer their questions straight up, and to keep roping Max into the discussion. It's a balance of helping them understand why he's different than they are—but also helping them see what's alike, too.

The older kid flops down on his butt then rebounds to his feet. Max and I both crack up.

"Max, if you want him to do it again say 'Again, please!'" I tell him.

Max says something like that, the boy repeats the move, Max giggles and both kids smile.

Max's laugh is the great equalizer—no matter who you are, it's hard to resist. When Max laughs, kids start to see his personality, not his disability. And once you get a laugh out of Max, you want more. The FDA has not yet labeled it an addictive substance, but someday they just might.

Now the little kid falls on his butt and jumps up, looking at Max. "You like that?" he asks.

"Eeee-yah!" Max says, happily.

And then the kids are bouncing up a storm and Max is laughing and we are all there in the twilight, enjoying each other's company and a spring-like winter's day.

Raising kids with special needs: Sit back, relax and enjoy the ride

Among the many glorious sites we enjoyed during our visit to Park City, Utah:

Park City, Utah's free transit system; above, Max on a bus.

The St. Regis funicular, a posh tram with leather seating that takes you up to the hotel.

The lift to Canyons ski resort.

Deer Valley Resort's fleet of 30 Cadillac Escalades, used to transport guests. We all loved the automatic "assist steps" that popped out when you stepped in.

Not pictured: Deer Valley Resort's shuttles. Or the Range Rover we rode in when we visited the Montage hotel. Or the airport train we did a loop on before we went through the security line, even though we were already in the right terminal.

Yes, it's true: I spent part of my vacation riding around in various modes of transportation, and often we weren't headed anywhere in particular—Max just wanted to ride. The day we visited Canyons, riding the lift is pretty much all we did, outside of a hot chocolate stop. Another afternoon, Max and I made several loops on a Deer Valley shuttle.

And one afternoon, we repeatedly rode up and down the funicular. A couple who'd gotten off returned 20 minutes later to find Max and me still on it, looking like permanent fixtures.

Years ago, I would have resisted letting Max ride around aimlessly. Way to waste a good (and not cheap!) trip, I would have thought. How boring. I am not going to give in. Or maybe I would have given in and just sat there, feeling bummed that this is what my life had come to: riding around shuttles on vacation with a kid who only wanted to sit in the back seat and peer out the window at the passing scenery.

But that was then. Now we make this part of our vacation, and either Dave or I ride around with Max on the local forms of transportation (and around and around and around). I'll talk about stuff we pass by, check my email on my iPhone, relax. We do this within reason: If we're taking up seats on a crowded shuttle, we get off. Or if Max had, say, wanted to eat dinner in the funicular, I wouldn't have let him, because I'm a tough-ass that way. Although we did have a leetle snack.

Letting go of perceptions of the way things "should" be with Max, on vacation and otherwise, has taken me a long time. I so wanted him to enjoy life the way the rest of us did. But being on things that go is Max's idea of fun, more so than tubing or visiting a museum, and I've come to realize that.

Sometimes, I still impose my own ideas of happiness on Max and my spirits crash and burn when things don't pan out, which is what happened at his birthday party this year. But mostly, I've accepted Max's quirky sense of a good time. It's helped me stress less, let go of sadness and sit back, relax and enjoy the ride.

Appreciating the services our kids get: a guest post

This guest post is from Jane Schulz, Ed.D., over at Grown Man Now. She's the author of a book by the same name; the title refers to her son Billy.

Jane, a mom of four, is a longtime advocate for the rights of people with disabilities. She's an inspirational speaker, writer, and educator; she is considered a pioneer in the fields of special ed and civil rights. She literally wrote the book: "Mainstreaming Exceptional Students: A Guide For Classroom Teachers."

The book is available in paperback and on audio.

I don't think the words "dedicated" or "determined" or "intrepid" even begin to describe Jane, a woman who has a picture of herself parachuting on her profile photo. She and Billy live in Kingsport, Tennessee, where the two often speak at churches and youth and civic groups. Please, give her (and Billy!) a warm welcome! I know she'd be glad to answer questions.

Dear Parents,

I have read your blogs and comments and I understand. I understand because I’ve been there – starting 55 years ago. How different our lives were from yours! We didn’t have to deal with the speech pathologists, the physical therapists and the early childhood specialists…because we didn’t have those services.

My son Billy was born in 1956; we were sent home from the hospital with the assurance that everything was fine. But Billy was our third child, and we knew better. It seems impossible from today’s viewpoint, but it was eighteen months and three pediatricians later that we were told he had Down syndrome (they called it Mongolism).

Somewhat relieved to have a diagnosis, we asked the doctor what we should do. He said, “Take him home and love him. He will be sickly and he will like music.” On the way home we stopped and bought a humidifier and a record player. This was our early childhood intervention.

We learned later that many babies with Down syndrome had been institutionalized. That would never have been our choice.

In our ignorance—or wisdom—we raised Billy in the same way we raised our other three children. They became his teachers, prompting his speaking, encouraging his social interaction, teaching him songs and dances. We took Billy everywhere, experiencing the stares that you still endure and yes, becoming angry with rude strangers. I even developed strategies like staring back and in one instance saying, “You seem interested in my son; would you like to meet him?”

The real beginning of my advocacy (the school officials would probably use another word) came when Billy reached school age. The custom at that time was for children with disabilities to attend a special school. In attempting to enroll him at age six, I found that he wouldn’t be eligible until age eight. (Other stipulations were being toilet trained and able to speak his name. He qualified on these requirements.)

Billy’s younger sister was entering kindergarten at age five. How could Billy be denied school entrance at age six when he clearly needed educational benefits? How could I explain that to him?

I found that at that time, in Georgia, certification or a college degree was not required for kindergarten teachers. Mustering my courage, I applied for and obtained a position as a kindergarten teacher in a local school. With the help of my daughter and her daily experiences at another school, I became a teacher, with Billy entered in a class adjoining mine. We were pioneers in inclusion, which became a passion of mine and which determined my new career. Billy blossomed and we were sure that the next year, when he was eligible for the special school, he would really learn.

The teachers at the special school were kind and patient, and required little from the students except that they play well together. I wanted my child to learn! At home, we made picture word cards, played games, and counted everything (just recently my other children and I shared the habit that each of us had acquired; even now we count pills, slices of cucumber, everything we do).

We established a Cub Scout group in a garage, started a Sunday School class for exceptional children at our church, and did everything we could imagine to help Billy learn to interact with other children in organized settings.

What Billy really needed was the opportunity to be part of a good school. In the 1950s that didn’t seem possible. Only through parent advocacy and determination did educational services for children with disabilities evolve. Such advocacy and persistence are still necessary to insure that good education, in the least restrictive environment, will continue.

Raising a child with a disability is a tremendous challenge but I can assure you, from decades as a parent and a professional, the rewards are great. Billy and I rely on each other in many ways: he folds my linen and I cover his over drafts. In all honesty, I can join him when he says, “I got a good life.”

Please, share your thoughts with Jane—and like this amazing woman's Facebook page.

Raising kids with special needs: The place where everyone knows your kid's name

Max has this thing about his chocolate milkshakes: He wants three of them, every single time. Long before we get to the ice-cream store, he's reminding us that he wants three milkshakes. Chocolate. At home, when we whip one up in the blender, same thing: "Eeeee!" says Max ("Three!"). I don't see this as a problem, though someday when Max is in his martini phase and Dave and I accompany him to happy hour, downing three martinis at once might be a bit excessive.

We usually hit the Cold Stone Creamery near us at around 6:00 at night. The store's pretty empty then, which is Max nirvana. Max dashes right up to the counter. The guy there says hello. "You want three chocolate milkshakes, right, Max?" he asks, rhetorically, and Max nods happily. He makes one shake and splits it into three cups. Max polishes them all off.

It's not very eco-correct to use three cups, so hopefully this phase won't last forever. Still, we have to hold the cups for Max to drink out of (he has trouble grasping them but insists on them) and it helps that they're not filled to the top. Most important, Max feels totally comfortable at this place and there's never any drama. I'm comforted, too—it's great to have someone behind the counter who knows Max's milkshake habit and who doesn't give me a strange look (or turn me down) about divvying up the milkshake. And the Oreo Creme Filling ice-cream doesn't suck, either.

Do you have a go-to place like this in your neighborhood where your child and family are welcome...and comfortable?

Oh, and if you are a person who takes issue with Max's milkshake habit, refer to The Spaghetti Manifesto and substitute "milkshake" for "spaghetti."

Max's three new things

First new thing:

The other morning, as I took a shower, Max sat on my bed and cruised YouTube. I came out and heard the most amazing sound: Max singing along to the Thomas the Tank theme song. Now, I have heard him singing on and off over the years, especially during music therapy. Like this:

But I have never, ever heard him singing to himself, for the pure joy of singing.

Second new thing:

Max is turning into quite the comedian (not that Sabrina and her knock knock joke phase weren't memorable and all). Sunday night, at bathtime, Max informed us that he didn't want to take a bath in the bathtub. Then he ran around the house, showing us all the other places he'd prefer to take a bath. Like in the sink. Or in the piano. Or in the fridge. Or on the front porch. He's made jokes before, but this was a veritable comedy routine. He was cracking up the entire time, and so were we.

Third new thing:

Jumping is not yet in Max's repertoire of movements...or so I thought. Last night we were in town enjoying a feast of, wait for it, spaghetti followed by chocolate ice-cream. After, we took a walk around town, and Max started doing this thing on every corner. He'd crouch, then he'd stretch his body up high, then he'd lurch onto the street. At first, I didn't realize what was going on. Duh! "Max, are you jumping?" I asked.

"ESSSSSSSS!" he said, gleefully.

And he kept right on jumping off curbs. His kind of jumping.

Three new things. Three seemingly small things. And yet, every one of them seemed significant—and really, really wonderful.

The progress I never think about (that happened on its own)

Like many parents of kids with cerebral palsy, I'm very focused on Max's physical and cognitive progress.

The Botox shot in his right hand has done a nice job of loosening it up, and he's been spontaneously using it to lift more things. Score! The Botox to his salivary gland hasn't had a real effect on the drooling, though, so we'll have to consider other options. Tomorrow, the serial casting starts. There's no purple kind available, I've been told, but I've got a bunch of Purple Sharpies. I just sent out Dave to buy Max a new purple truck to distract him. "If there's no purple truck, just find anything fun that's cool and purple," I said, and so Dave is currently on a purple hunt in Target.

Max is also progressing with reading, and getting into spelling. The other day, he pointed to the letter "g" in a sign and then to my green shirt. He was telling me he knew "green" began with a "g." I'm loving it. I'm high on it.

So I've been all sorts of focused on Max's muscles and limbs and brain power. I haven't given much thought, if any, to his emotional maturity. I just couldn't let myself get concerned about it—too many other worries on my list. It was something I figured would happen over time, and it has.

In the past year, Max has grown less fearful of visiting new places and trying new activities. He gets upset when I tell him he's misbehaved. He gives his little sis this "What's your problem?" look when she's having a tantrum. He gets concerned by crying. When my mom called in the middle of the night a few months ago to tell me that my dad had died and I sobbed, Max was there, and he couldn't stop kissing me.

Over the weekend, we were at Max's favorite place in the whole wide world, a beach condo we go to during the summer. Max has, historically, wailed whenever we've left. Perhaps you've heard him? He'll traditionally start the second he sees me packing up our bags, and not let up till we're a half hour down the highway. It makes going home so pleasant.

Only here's what happened this time around. It started when I put a packed bag filled with the kids' clothes in the kitchen, and stepped away for a minute. When I came back, it was gone. I looked in the bedroom. Max had dragged the bag in there and was quickly tossing clothes into an open drawer.

"Max!" I said. He looked up with a devilish grin on his face, and then we both laughed hysterically.

When we drove away, Max got a little weepy. "I know, Max, you don't want to go home," I said. "Me either. We'll come back soon, OK?"

And just like that, he quit sniveling and nodded his head.

Max has fallen a little behind with his walking because of his tight right foot. He's moving ahead with the emotional maturity.

A few steps forward, a few steps back: That's how it goes, right?