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

Look who's writing!

OK, so I won't be hiring Max out anytime soon to address wedding invitations. But holy handwriting: He is scribbling his name by himself! Quite the feat for a kid with hands that sometimes don't do what he wants them to do.

Squeeeee!

Max uses a pencil encased by foam tubing, the same kind we use for the maroon spoons he eats with. The stuff looks like this:

Once again, let me just say, TAKE THAT, DOOMSAYING DOCTORS OF THE NICU.

Yeah.

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. 

Kids and adults with special needs who give you hope

Back after Max was born, I spent a lot of time emailing moms on The Pediatric Stroke Network e-loop. I was especially interested in connecting with ones whose kids were older six and up. Hearing that their children were walking, talking and generally doing OK gave me the hope I was hungry for. The doctors hadn't given us much to go on.

Now when one of you tells me how much Max gives you hope, it thrills me—because I know how you feel, because I am glad Max gives you comfort, and because I am grateful that he is doing as well as he is.

I also look to older kids and adults for hope about Max's future. This week, inspiration struck three times: first with a post by Susan Senator about her son Nat, 22, who has autism and who just moved into a home, with staffers to assist him and his roommates. And then by this video I found about young adults with special needs who live together in a group of apartments in California.

 

And then, I was wowed by this video clip I found at Shannon's blog about three men with cerebral palsy who are doing great things. They're featured in a documentary-in-progress called The Cohesion Project.

I hope they inspire you, too.

Better therapy sessions for kids with special needs: therapists share!

I recently asked a bunch of pediatric therapists how kids can get the maximum benefits from therapies: speech therapy, occupational therapy, physical therapy, ABA therapy, whatever therapy! All of these experts are contributing columnists to PediaStaff, and they didn't hold back on advice or honesty. Hope you find their words as helpful as I did!

From Melanie Potock, a pediatric speech language pathologist and feeding specialist in Longmont, Colorado who blogs at My Munch Bug 

DO... 
• ...Feel free to video our session to share with your partner, nanny or other caregivers.
• ...Call me if you have any sickness in your home that day. I see so many kids who are medically fragile and it’s helpful for me to know if I am about to enter Strep Throat Territory!
• ...Let me know if you feel you need to change to another therapist. Not every therapist’s style is the right fit for every child, or every family. Therapists understand that as a parent, you are just trying to do what you feel is best.
• ...Celebrate each and every step of progress with me! Therapists have the benefit of watching many, many kids make this journey over the years. We know each step on this path. It’s important for everyone to celebrate even the tiniest accomplishments and not become overly focused on the final destination. We will get there, one step at a time!

DON'T... 
• ...Hesitate to tell me if you think something that I have suggested just isn’t working for your child or your family. I promise to listen, adjust the therapy and not take it personally.
• ...Clean up the house just because I am coming over to do therapy. I want my visits to the home to make your family’s life easier. Believe me, I’m used to seeing dirty dishes on the counter.
 • ...Lose the therapy tools I loaned to you. I’m happy to loan them, but I can’t afford to replace them. And if your toddler accidently spilled grape juice on the book I loaned you on speech and language development, please let me know before I loan it out to another family.
 • ...Be upset with me when I need to cancel at the last minute due to bad roads. As a therapist who drives from home to home and covers many miles in a day, road conditions vary and I often get caught in bad weather while it is still nice in your neck of the woods.
• ...Ask me to change your child’s diaper or take them to the potty, unless it is a part of your child’s therapy plan.

From Stacy M. Menz, a pediatric physical therapist in the greater San Francisco Bay area who blogs at Starfish Therapies

• Do encourage collaboration between your therapists and other team members (including caregivers). Often the other team members will be working on things that are easy for another therapist to carry over, which allows extra skill practice to be 'snuck' in. (An example: if a speech therapist is working on the child producing sounds such as m,b,p then a PT can have the child practice those sounds if they are playing with toys that have things like cows or sheep).
• Don't make exercises stuff you have to "fit into" your day—incorporate the exercises and 'homework' into your routine as much as possible so it is part of the day. Often your therapist will have ideas on how to do them; perhaps they can done when you change a child's clothes or diapers. Just be clear on what you can handle as a family so that your therapist can pass on the top priority for you to practice.
• Do give your child time to be a kid and have free time, or take a short therapy vacation. Letting them have time to play and interact with the world can often provide their bodies a valuable opportunity to practice, process and integrate all the new skills they are learning.

From Rona Silverstein, an occupational therapist in the northwest suburbs of Chicago 

DO...
• ...Communicate with the therapist and participate in the sessions if appropriate.
• ...Ask questions of the therapist—we love to discuss and share our perspectives.
• ...Provide us with your perspective on what is going on. You are an expert as you know your child way more than we do.

DON'T... 
• ...Forget the session is about your child. Keep the focus on him, offering encouragement and participating in problem solving.
• ...Ask questions at the end of the session. We may feel rushed and in a time pinch.
• ...Think we know all the answers. We don't! We do have a unique perspective though, so don't hesitate to ask us what we think.

From Becca Jarzynski, a pediatric speech-language pathologist in Eau Claire, Wisconsin who blogs at Child Talk 

• Do ask questions! Sometimes we therapists get in our own heads and forget to explain things well. That’s our fault, not yours! Never feel like a question is to simple or to silly. It’s your right as a parent to understand what we are talking about. Make us slow down. Ask as many questions as you want and don’t stop asking until you have gotten the answers you deserve.
• Don't hold back on sharing with us. A good therapist will not only get to know your child, but you and your family as well. Tell us what you love to do each day. Tell us the struggles you face. Tell us the successes you’ve had. The more we know, the more we can help you integrate what is best for child development into what is best for your family.
• Do take our suggestions with a grain of salt. We are probably going to give you too much to do—we're therapists, it’s what we do. Although we have the best of intentions, sometimes we worry too much about the child and too little about the family. Give yourself permission to ignore us sometimes. Tell us if what we are asking you to do isn’t reasonable. Remember that no matter how important therapy is (and it is important), it must be balanced with maintaining a healthy family, full of love. Trust yourself to find that balance.

From Joleen R. Fernald, a pediatric speech-language pathologist in Dover, New Hampshire 

DO...
• ...Be punctual to your appointments. I know you have so much going on in your life, but we have lots to get done in a short period of time!
• ...Tell me when homework is too much. I recall early in my career when I would remind families to read at least 30 minutes per day with their child. Then I had children of my own. I suggest 5 to 10 minutes now!
• ...Try out any exercises with me present so we can make sure you feel comfortable doing them.
• ...Understand that you, the parent, are far more knowledgeable about your child than I do; however, also understand that I am the expert in speech and language and together we make a wicked awesome team!

DON'T... 
• ...Act as if you understand what I am explaining when you really do not. I don't mind explaining; please ask.
• ...Respond for your child. Let him work it out for himself so he can learn.
• ...Tell me you practiced your homework every day when in reality, you practiced on the way up the stairs to see me.
• ...Forget to update insurance information or paperwork. This can be very expensive for you and a pain in the neck for me. I'd rather spend my time working with you and your child than chasing down insurance reimbursement.

From Karen Head and Meghan Graham, speech-language pathologists, and Jill Perry, a pediatric occupational therapist; based in Boston, they're the founders of All 4 My Child, a site about collaborative tools and technologies 

• Do explain your family culture and routines to your therapist.
• Don't feel that you need to be a therapist—"mom" is the most important role you play.
• Do share those special little moments of progress (or just adorableness) with your therapist. We treasure them.

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.

9 ways to always have hope for your child with special needs

It's hardest when your child is very young and you're still struggling to accept that he has special needs. So much about the future is unknown, although you've heard every single grim risk of his condition or disease. You wish doctors would just tell you what your child will be like, but they can't say for sure. You want to have hope, and you do, but sometimes worry and despair overpower it and you fear the worst.

As your child progresses you do, too. The worry feels less like a tsunami and more like an undercurrent. You quit looking at your child and wondering what's wrong and you start celebrating what's right. You accept. Sometimes, though, you accept too much and forget that there is still so much potential, and that you should never stop hoping.

Here's how to always have that hope, whatever your child's age:

• Toss the child development books. Unsubscribe to any of the "This is what your baby/child is doing now!" online updates you registered for before you knew your child was going to have special needs. They will only make you compare your child's progress to what is typical, and that will only make you despair. Your child is on his own timeline, and nobody else's. Put that on a Post-it and hang it on your bathroom mirror.

• Look at what your child is doing today. Of course you want him to walk, talk, ride a bike, eat by himself, sing, and do any number of other things. But relishing and appreciating the stuff your child is able to do in the here and now will give you more confidence in his future. Contentment breeds hope; worry breeds more worry.

• If the worry is ever-present, if it makes you cry a lot and keeps you up at night, get help. Find a support group, or see a therapist. Carve out time for taking care of you, because you need to be happy and hopeful—and your child needs to feel that happiness and hope of yours.

• Rethink your idea of "accomplishment." It doesn't need to mean the ultimate goal you have for a child—say, walking. An accomplishment can be your child learning to grasp the handlebars of a walker. And taking a first step in that walker. And taking a step holding your hand. Each and every thing can be A Big Deal, if you make it one. Screech "Wheeeeeeee!" Email friends and family! Alert the press! Your hopes will be buoyed and you will not be sitting around thinking, "Why isn't he walking yet?" Because in your mind, your child is well on his way there.

• You know that old fable about the rabbit and the hare, and how the slow-and-steady hare won the race? Now forget that old fable. THERE IS NO RACE. See above, "Your child is on his own timeline."

• Surround your child with positive doctors and therapists. Regularly ask them to share the great stuff he is doing, ditto for his teachers. Keep a list handy for insta-inspiration.

• When you see friends, family and neighbors you haven't seen in a while, about the progress they see in your child; you'll hear about stuff you probably hadn't even noticed.

• The next time you are freaked that your child isn't progressing, go look at photos of him from a year or two ago, think back to what he was doing at the time, and consider how far he has come. Also: Call up your wisest, most reassuring friend and have lunch or dinner, ideally with wine involved.

• Enjoy your child. The more you do, the quicker the grief will pass—and the more your hopes will be buoyed. Find activities you both like (and remember, not every single thing has to be therapeutic). Take lots of photos. Be silly. Cuddle. Kiss. Try so hard to quit peering into the future, and look at the beautiful child in front of your eyes.

Do not read this blog tomorrow

The other week, I went out with a group of moms. All of us have kids with special needs. A woman who reads this blog, Beth, had organized the night and invited me (hi, Beth!). I hadn't done anything like that since Max was a baby and Dave and I attended a support group at a place where Max got therapy. I found it depressing; I found everything depressing back then. Dave found it boring. We never went back.

My special girls' night out was anything but blah. Over pizza and pasta the ten of us laughed, griped, exchanged information on everything from apps to therapy, griped and laughed lots more. It was an exhilarating, rejuvenating, reaffirming, everything-ing evening. The next one's in a few weeks, and I am psyched.

I've found such incredible group therapy online that I've never reconsidered how amazing the real-life kind can be. It is. Whatever you get from blogs and websites can't compare to the bonding you do when you're face to face with other moms of kids with special needs. It just can't.

So here's what I'm asking: Tomorrow, instead of reading this blog, pick up the phone and start planning a get-together with special needs moms you know (unless you read this blog at 5 in the morning, in which case, wait to call). Or send an email. If you don't know moms in your area, ask one of your child's therapists to play matchmaker. Or hook up with some parents in your child's class. I am telling you, it will be worth the effort. Any of you moms who already do this and love it, chime in!

Word, I'll know if people visit this blog tomorrow instead of making that call or sending that email because I have a traffic meter! Other than random Google hits for things like "purple" and "car wash costume," I am not expecting any of you here.

Go. Hang with other special needs parents. Please.

If my child didn't have special needs

If my child didn't have special needs, I wouldn't have the extreme appreciation I do for his accomplishments. I relish each and every mini milestone, right along with the mega ones.

If my child didn't have special needs, I wouldn't be an expert in occupational, physical and speech therapy. Anyone care to open a practice with me?

If my child didn't have special needs, he might not have the fixations I adore. Purple! Spaghetti! Car washes!

If my child didn't have special needs, a lot more stuff in life would probably faze me. Basement flooding, post-baby belly flab, credit card theft, fender benders—come what may, I can deal. Um, OK, except for the post-baby belly flab. That's just plain tragic.

If my child didn't have special needs, I would have never understood just how non-different kids with special needs can be.

If my child didn't have special needs, we'd have to wait on the lines at Disney. Membership has its privileges!

If my child didn't have special needs, I'd have never known just how much of a devoted dad my husband could be. I might not have seen the extent of his patience or the depths of his love and nurturing.

If my child didn't have special needs, I would be six feet tall, slim and blond.

If my child didn't have special needs, I wouldn't have a bazillion medical appointments to juggle and perhaps, with all that extra time on my hands, I could have found a resolution for world peace. As it turns out, though, I am really good at juggling bazillions of medical appointments. Phenomenal, actually. Like, I am a human app.

If my child didn't have special needs, I probably wouldn't get why a parent of a child with special needs wouldn't want to trade their child for another. But I have a child with special needs. And I can't imagine any other child except him.

Your turn: What if your child didn't have special needs?

Stage fright

Max recently had his spring concert. The week before, I got a promising email from his teacher: "I am happy to tell you that Max did a great job at the dress rehearsal. He waited in a quiet area as the other children sang and when it was our turn he joined the class (with some hesitation) but then he happily performed. He was so excited afterward as well. We high fived and congratulated him."

I was so psyched. I took the morning off from work and headed to the school, me and my high hopes.

Max's class was slated to sing "Friendship Rap" and "You're A Friend of Mine."

I crouched down between the two aisles of seats, right in front, camera in hand, eager for the kids to come out. When they did, Max made a beeline for me. I gave him a hug and sent him back to the row of kids lined up in front of the crowd.

Let me just say that this was already a score; Max has a history of melting down at these events. The fact that he was smiling and that he agreed to rejoin the class (instead of staying glommed to me) was major. Our family actually has a history of stage fright. Sabrina was once in a dance recital at 3. As all the other little ballerinas pranced around to the Sesame Street theme song, Sabrina just stood there and stared into the audience. Literally. The only time she moved was when it came time to take a bow, at which point the audience broke into wild applause.

The performance started. Max just kept smiling at me. He didn't sing or do any of the hand gestures. And you know what? I wasn't at all disappointed. I was genuinely thrilled he was content up there. And proud of him. He ran into my arms after the performance was over, and we had the best hug.

If there's one thing I've learned about raising Max—and Sabrina—it's this: Our kids may not always live up to our expectations, but as long as they're happy, it's all good. Once you accept this, you'll be happy too.

Raising kids with special needs: The girl next door

Summer's almost here, and I know it because A. is singing in her backyard. She lives next door to us and every year, she starts her solos around Memorial Day, usually in the early evening. I watch her from our back door. She stands beneath a giant oak tree, always alone. I'm never quite sure what she's singing, but her voice is clear and mesmerizing. She holds a microphone in her hand and raises it high at times, as if she is dedicating songs to God.

A. has Down syndrome. She is in her early twenties, and gives me the biggest wave hello whenever she sees me. She is the last of 16 children. After Max was born, I hoped that we might glean words of wisdom about raising him from her dad, Mr. R. Over the years, though, he's mostly just told us how impressed he is with Max's progress. "Hey there, Max, looking good!" he'd say from his front porch as Max wobbled by on his walker and then, later, on his adapted tricycle and these days, on the green tractor he drives like a demon.

I don't see A. that much. Every morning, our state's transportation service for the differently-abled arrives to take her to work shortly before Max gets on his yellow bus. I am not sure where A. works now. She used to help out at a frame store, but I think she switched jobs. I can always count on seeing her Halloween night, because she is a diehard trick-or-treater who seems to rack up the most candy in our neighborhood. Mr. R. is famous for giving out full-size candy bars.

Before I had Max, I felt sorry for A.

Now that I have Max, I don't feel sorry for her at all.

I notice how good her speech is and all the activities she loves to do, including playing croquet and growing a vegetable garden. I see how happy she seems, and how loved she is.

Our families are the only ones in the neighborhood with kids who have major special needs. I find it comforting to have A. next door. It makes me feel less alone.

I look at A. and wonder if I am seeing the life the future holds for Max. I'd like to know what Mr. R. and his wife have planned for her after they're gone; they are in their late seventies, maybe even early eighties. With all those siblings, surely one will be there for her.

Tonight, though, A. is singing in her backyard, I am watching her, and she is perfectly content.

It is good to have her there.

Can you understand why?

On convincing people that, yes, your kid with special needs is content

I'm on a train going home the other day and a guy sits down in the seat opposite me. We end up talking and it turns out we have a mutual friend. He asks where the kids go to school, and I tell him. He's never heard of Max's school, and I explain it's for kids with special needs.

"Can I ask what his disability is?" he says.

"He has cerebral palsy," I say.

"Ohhhh," he says. "That must be hard for him."

"Nope," I say, cheerfully. "He's a happy kid."

"How does it affect him?" he asks.

I explain that Max has issues with speech and using his hands, the simplified way I usually explain cp.

"Doesn't it bother him that he can't talk like other kids can?" the guy asks.

Wow. That's bold. "No, it doesn't—because he doesn't think he's different," I say. "He tries to talk in his own way, and he has an iPad with a communication app. He plays like other kids play. He laughs like other kids laugh. His cerebral palsy does not impair his ability to be a kid!"

And then I pull out a picture of Max with his gigantic grin and show it to the guy. "Does this kid look unhappy to you?" I ask.

"No," he says, and we move on to other topics, and I'm just a little flustered at having to explain, once again, that Max's special needs are not a tragedy.

It's not just strangers. I've had conversations along these lines with friends and family. Early on in Max's life, a very close family member once wondered out loud whether the reason Max smiled a lot was because he was simple-minded. It took a few therapy sessions to get past that one.

My child is happy with who he is.

I need the t-shirt.

Bring on the homework!

Yesterday evening I went to Back To School Night for Max, and something shocking and amazing happened: For the first time ever at one of these events, I didn't cry. It was inspirational, not depressing.

In previous years, the night would start off fine. I'd love to sit in Max's seat (happy I could still fit into a kiddie seat), look at photos of students and the pictures students they had made, hear from everyone how cute and awesome Max is (that, I can never get enough of). But as I'd sit there, listening to the teacher speak and staring at all the special-needs equipment, I'd inevitably choke up and end up sitting with my hands over my eyes so none of the parents could see the tears. The reality was too much.

Not last night.

First, I was thrilled to find out there were a bunch of other verbal kids in Max's class. I'd asked for him to be placed in a class like that because I thought chatty kids would encourage him to talk. I'd e-mailed back and forth with his teacher, who I thought was really nice and knowledgeable, but she was even better in person. The other parents in the class seemed on top of their game.

Max's obsession with purple is legendary at the school; I held a news conference and informed everyone brown is his new favorite color. "Ah, that's why he keeps wearing that I'm The Big Brother shirt," his teacher said, confirming my suspicion that while I was away at the conference Dave had, in fact, let him wear the same shirt three days in a row. Busted!

The only slightly disconcerting thing was that the teacher didn't bring up curriculum plans when she spoke to us; I had to raise my hand and ask what would be happening with reading and math. This year's goals include getting kids to recognize upper and lowercase letters, know the sounds letters make, and recognize sight words. For math, they want kids to be able to learn to sequence and, when they're ready, start on simple addition and subtraction. For a moment, my mind veered to "Wonder what other 7-year-olds in other schools are working on this year" but I yanked it back to the present. It's hard to believe I still do that comparison thing but sometimes, I do.

Last year, I had a long conversation with Max's then-teacher about how keeping parents informed about what was being taught in class, and what we could reinforce at home. I also asked for homework; there's no reason our kids shouldn't get it. I've seen a theme in this school (which I generally think is stellar) and Max's last school (which I didn't think was stellar) that's disconcerting: a tendency not to give homework, for kids or parents.

But by last year, at 6, Max was ready for it. Even more than other kids, ours need learning reinforced at home. Even more than other parents, we need to be in the loop on just how we can help our kids. One of the most important things I learned from Early Intervention is that therapy and education can only go so far; moms and dads have to carry on what the experts do. It's a hell of a responsibility, but it's part of being Chief Everything Officer, especially when you're parenting a kid with special powers. Too bad we don't get bonuses at the end of the year.

That teacher and I came up with a "Learning Link" page she'd send home every week, with info on what she was teaching, activities parents could do and, yes, homework (sorry, kids).

It's handed out on Monday or Tuesday and broken down by subject—Social Skill of the Week, Language Arts, Writing, Math, Science, and then What's happening this week?/Helpful tips for home. There's also a sheet of homework attached, to be returned by Friday.

I'm not saying I do every single thing on that page; I'm lucky if I get to a few. Last weekend, while I was away, Max's Learning Link page got lost in the shuffle and Max didn't do his homework. I am sure teachers get really frustrated by parents who want to engage, and then flake out. I just do the best I can.

Last night, I found out that a lot of the classrooms are doing Learning Link and damn, I was proud. Why didn't I patent it? He, he. As a working mom, I haven't had a lot of time to volunteer at Max's school, which I've felt awful about. But me and this teacher (who's no longer at the school) have left a lasting legacy.

What has your experience been with teachers and their engagement with you/learning at home? Would anyone want a template of the Learning Link page, to share at their school?