Sometimes our family life is like a sitcom—and Speechless nails it

A fire truck whizzed by as I drove Max to an occupational therapy appointment yesterday afternoon. "Where's it going?" Max asked. "I'm not sure!" I said, but that wasn't true: I knew it was headed to our street. A tree had just fallen, downed a power line and knocked out the electricity. If Max had a clue the fire truck was by our house, though, he would have insisted I turn the car around and buh-bye therapy. These are the perils of raising a wannabe firefighter.

As Max did fireman stretching exercises with a "fire hose" (aka a red rubber tube, thank you genius OT) the texts started coming in. Our babysitter sent a photo of the fire truck. Sabrina zapped photos of the fire truck. Her friend's mom sent a photo of the fire truck. Everyone wanted Max to see.

Suddenly, I was having a crisis. Should I pull Max out of therapy and go home? I mean, it's not every day that a ladder fire truck—your child's favorite one, no less—is sitting outside your house. But, bad mom that I am, I let Max finish the session. He squealed when we got to our street and saw the fire truck.

Max couldn't have looked any happier at the scene of the emergency. He had me snap photo after photo as concerned neighbors hovered nearby, discussing the damage and when our power would be restored.

Next, Max dashed over to the firefighters. "Hi, Max!" they said. "We didn't know you lived here!" Because of course, they knew him. He posed for more pictures.

"Fireman Max, you need to come inside and do your homework," I finally told him.

"No! Job!" said Fireman Max. As in: It is my job to be here so back off, Mom.

Sometimes, the situations I find myself in with Max are straight out of a sitcom. I'm sure there are plenty of special needs parents who feel the same. And now, there's a sitcom that's laughing (and calling b.s. and taking a stand) right along with us: ABC's Speechless. It's the first TV comedy to depict life with cerebral palsy. People will be getting yet more insights into CP thanks to the show's partnership with the Cerebral Palsy Foundation (CPF). Speechless premieres next Wednesday, September 21, at 8:30/7:30c. I'm hoping it's a game-changer for Max, others with CP and the disability population as a whole.

The show stars Minnie Driver as Maya DiMeo, a mom of three. Her oldest, JJ, (Micah Fowler) has cerebral palsy, and Maya stops at nothing to get him the help he needs. There are many relatable moments throughout the first episode, which had me laughing. People gaping at her son: Oh, yah, I know all about that. People acting awkwardly because they're not sure how to behave around someone with disability: Yah, I know about that too. People surprised that JJ deserves to be treated like any other young man: Oh, yah, #beenthere.

As the mom of a teen with cerebral palsy, I'm grateful to see a teen with CP (played by an actor with CP!) presented in such a real way, with none of that dippy, pity-filled, TV "After School Special-ness," as producer Scott Silveri told the L.A. Times. "At its core it's a show about being different and not apologizing for being different and embracing who you are."

One of the reasons Speechless is so true to life is because it is informed by people with disability and their family members. Silveri, who produced Friends, has a brother with cerebral palsy. Experts from the Cerebral Palsy Foundation and CEO Richard Ellenson—dad to Thomas, a 19-year-old with CP—are providing guidance. And then of course there's Micah, who emailed me yesterday. He's helped writers with technical details, like how he operates a wheelchair, and shared stories about growing up that have been used in the show.

I'd asked if he particularly related to any scene in the first episode. He mentioned the one in which Maya gets outraged that the only ramp into JJ's school is one used to transport garbage: "The scene actually happened, just as you see it in the pilot! My mom was trying to get me in the front door of the school and my powered chair couldn't make it over the lip of the door jamb. My mom was all frustrated and was complaining about the situation to the door monitor. She asked, 'Who do I need to talk to about this to get it fixed?' The door monitor quietly pointed to this man behind me, in a suit, who had seen the whole thing. Turned out it was the superintendent of the school district! He was all apologetic and by the next week they'd built up the entryway so I could roll smoothly into school! The school district was awesome, very accommodating, and took care of it right away."

Richard Ellenson has his own material to offer based on raising Thomas. Recently, he put together notes for Speechless about dating and people with disabilities. "I was thinking of an interview CPF had done just that day with a fantastic twentysomething guy with dysarthric speech and a twentysomething woman who had difficulty walking," he says. "The stream of insights that the Foundation has gathered allows us to help the writers wend their way through these incredibly complex issues. But I was also literally carrying on a conversation with my son, who was using his iPad, to tell me about a girl he liked and trying to figure out whether he had a chance or not."

Bottom row: Micah Fowler and UCP Scientific Advisory Council member Dr. Eileen Fowler (no relation). Top row, from left: Micah's mother, Tammy; Richard Ellenson; Speechless producer Scott Silveri; and Micah's father, David.

One big hope Micah has expressed for Speechless: that it helps people get to know JJ as a "very normal" person (disability? What disability?), and that it brings awareness. He is all too familiar with the fact that many people don't understand what CP is. "Not very long ago, I had a substitute aide for a day," he recalls. "She was a pretty good looking young lady and as we got into the elevator she asked me, 'Micah do you need me to help you clean out out you colostomy bag?' I was like, 'I don't have one of those...but thanks anyway!'"

As part of its partnership with Speechless, CPF will post related content immediately after episodes end. "Laughter makes it OK to talk about cerebral palsy," says Richard. "Speechless will get the conversation going, and the Foundation will give the information to have a conversation about the more detailed aspects." Following the first episode, CPF will present an overview of CP; subsequent weeks will address augmentative communication and inclusion. The Foundation will also be introducing audiences to a diverse range of families, as each one of ours is its own awesome (and challenged and on occasion, bonkers). You can sign up for the content here. (This collaboration is one of several innovative and impactful CPF programs, including the Women's Health Initiative, Design for Disabilities and Kinect).

I'm psyched to watch the show with Max. There are sure to be teachable moments, like JJ's version of giving the finger (a life skill not usually covered by OTs). Oh, man, I have so many ideas for episodes. See: As Maya waits on endless hold with the insurance company, she decides to drive over to their offices and confront them! See: Maya asks for an extra speech therapy session during the IEP meeting; when she is told her son doesn't need that, she opens a door and her team of experts and advocates attacks! See: A youth program refuses to accommodate JJ and Maya goes all social media on them until they beg forgiveness and kiss up to him!

See: Max goes to sleep asking if another tree could fall down tomorrow so the fire truck will return! Oh, wait: That's my actual life.

Tommy Hilfiger makes clothes for kids with disabilities, thanks to a mom's dream

Say you have a child with a disability who has challenges using his fingers and hands. It's been a long haul helping him learn to feed himself, hold a cup, maneuver a toothbrush, grasp toys, turn lights on and off, use a TV remote control and twist doorknobs, among other manual tasks. Thanks to lots of practice and even more determination, your child can now do these things. Not with ease, but he manages. And yet, there is one key life skill that eludes him: dressing himself.

When your fingers don't do what you want them to do, buttons, snaps and even zippers can be tough to manipulate. Your child is frustrated by this lack of independence. Therapists at his school put fabric loops on sweatpants so he can pull them up and down, but have no suggestions for how he can put on his own shirts.

That child is my Max, who has cerebral palsy. And as of this week, he's gained some dressing independence because Tommy Hilfiger has launched a line of adaptive clothing, available on Tommy.com. It's the first designer adaptive clothing, and it's due to the efforts of fashion designer Mindy Scheier, founder of the nonprofit Runway of Dreams. Her muse: Her 11-year-old son, Oliver, who has a rare form of muscular dystrophy. Mindy and I have a connection through a program our children attend, Friendship Circle, and she brought over samples for Max to try.

Styles from the Tommy Hilfiger Adaptive Clothing collection

This is a Big Deal for children like Oliver and Max, their parents and the fashion industry in general. It's the first time a major clothing line, let alone a designer one, has created clothing for people with different abilities. The collection includes 22 pieces for boys (sizes 4-20) and girls (sizes 4-18); the tops, pants, jeans and dresses are adaptations of other styles on Tommy.com. They have magnetic closures instead of buttons, adjustable pant legs to fit foot braces and adjustable sleeves.

Based in Livingston, NJ, Mindy's designed for Bloomingdale's and Saks Fifth Avenue. Over the years, she's adapted clothing for Oliver. Her aha! moment came came when Oliver wanted to wear jeans to school like his friends were. Problem was, they wouldn't fit over his leg braces, plus the button and zipper wouldn't have been possible for him to manipulate by himself during bathroom breaks. "I didn't even have the words to tell him he couldn't wear jeans to school," she recalls. "It was very upsetting to me." But she did have the sewing skills. She altered jeans to fit his leg braces, then stopped at school during lunch hour to help him use the bathroom.

Mindy and Oliver Scheier

That's when Mindy decided there was no reason Oliver and kids like him couldn't wear whatever they wanted. She started Runway of Dreams in 2013, with the mission of working with the fashion industry to adapt mainstream clothing for the differently-abled. She spent her first year doing surveys and focus groups with parents and kids to assess the needs of the community. Besides cerebral palsy, having Down syndrome and autism can also affect fine-motor skills and the ability to fasten clothing.

Using clothes from Kohl's, Target and Wal-Mart, Mindy had samples made up with MagnaReady magnets as closures (founder Maura Horton has a husband with Parkinson's disease). She showed the clothes to Global Brands Group, which makes children's wear for Izod, Calvin Klein and Tommy Hilfiger. And that's how Runway of Dreams became a reality.

Mindy and Oliver on The View in May 2015

Given that nearly one in five people in the U.S. have a disability, according to the most recent U.S. Census Bureau data, it may be hard to believe that until now no big manufacturers have created adaptive clothing. But the truth is, often people just don't get it unless they know someone with a disability. "I've been in design my whole career and only after I had Oliver was I privy to issues I never knew existed," says Mindy. "It takes a big mouth to help the industry understand this is a community that has not been served." Perhaps Tommy Hilfiger gets that more than other designers would, given that both he and his second wife, Dee, each have children with autism, and Tommy has done a PSA for Autism Speaks.

The time is ripe, she continues: "With Lego coming out with a figure in a wheelchair to models with disability walking down the runway, our culture is ready for this to happen." Mindy even trained the Tommy Hilfiger customer service team, explaining how to talk about children with different abilities. "Everyone there is saying they've never been more proud to work with their company," she says.

Oliver participated in the shoot for the Tommy Hilfiger website, along with six other differently-abled kids. "He's just so excited to have other people wearing what he's been able to wear," she says. "When we were in the middle of the shoot, Oliver looks at me and says, 'You see, Mom—if I didn't have muscular dystrophy, we wouldn't be here!' I said, 'You're right!'"

Mindy's already designed two more collections for Tommy Hilfiger, who made a donation to Runway of Dreams. They're in discussion about expanding the clothing to retail stores, and creating a line for adults.

Tommy Hilfiger Adaptive Clothing is the same price as the brand's standard children's styles, something Scheier pushed for. "I didn't feel our community should have to pay more," she says.  "It's a huge testament to Tommy, he absorbed the extra costs—the cost of a magnet is significantly more than a button." Some parents won't be up for paying designer price tags (the cost of the red shirt is $29.50). But Mindy's just getting started, and is in talks with other brands and retailers. "My dream is that there's adaptive mainstream clothing for every person out there whether you're shopping at Walmart or Saks Fifth Avenue," she says. 

Max and I were both excited for him to put on the clothes. The jeans size we got was small at the waist for him, so he tried the snaps with the jeans off and could open and close them with some fiddling.

I knew Max wouldn't be able to slip his arms into the polo by himself, even though the fit and material were nice and loose, because he's not yet able to move his arms that way. But the magnets made it feasible for him to close the front. They're powerful, and are drawn to each other with just a nudge; as they connected, they made an encouraging "click!"



Maybe some people watching this will see a boy struggling to put on a shirt. Me, I see only success. This is the first time in Max's life he has closed a top by himself, and it was only his third attempt. I love how the adaptive shirt enabled him to do a task that's previously been impossible. It was one little click of a magnet, one big move toward independence.

Clothes like these will be a game-changer for our kids. Not only will they have more autonomy, they'll better fit in with their peers, given that the clothes have the usual cool, crisp Tommy style. As Mindy says, "When you put on something that you feel good in, it affects your confidence and self-esteem."

What Max had to say: "It works! Yeah!"

Images from Tommy.com: Richard Corman. Image of Mindy and son: Runway of Dreams

Free bikes and bike lessons for kids with special needs

AN AMAZING BIKE GIVEAWAY FOR KIDS WITH SPECIAL NEEDS

For the second year in a row, the Friendship Circle is hosting a Great Bike Giveaway for kids with special needs, and they've partnered with major adaptive bike companies. You choose which of the five bikes you'd like to enter to win for your child, from now through May 12, then get 50 friends and family members to nominate you. Five runner-ups will each receive a $500 Gift Registry from Tadpole Adaptive towards an adaptive bike. Awesome-ness!

BIKE LESSONS FOR KIDS WITH SPECIAL NEEDS

iCan Bike programs (formerly known as Lose The Training Wheels) are geared toward helping people with disabilities ages 8 and up learn to ride a two-wheeler. Kids can do bike camps, after-school programs and in-school programs around the U.S.

And in case you don't win a bike...
PROGRAMS THAT PROVIDE ADAPTIVE BIKES TO KIDS WITH SPECIAL NEEDS

National

Variety Kids on the Go! funds durable medical equipment for kids with physical challenges and financial need, including bikes along with wheelchairs, walkers, van lifts, house ramps, adaptive car seats and strollers. You apply through your local chapter of Variety The Children's Charity.

Athletes Helping Athletes has provided handcycles to more than 625 children with special needs since 2000; you can apply here.

By state

Connecticut 

The Freedom Program provides bikes to kids with special needs—145 to date!

Florida

Project Ride, through the Jewish Community Center in Boca Raton, Florida, gives new, modified adaptive bikes to kids ages 6 to 17.

Idaho

Bike For Kids is an Idaho fundraiser whose proceeds go toward providing adaptive bikes to kids with special needs; contact info for applying for a bike is here. 

Michigan

On Bike Day at Beaumont Children's Hospital in Michigan, 50 kids with special needs get custom-adapted bikes. 

Pennsylvania

The My Bike program by Variety the Children's Charity provides adaptive bikes to children with disabilities who live in the Southwest, Pennsylvania region.

GOOD ADAPTIVE BIKES FOR KIDS WITH SPECIAL NEEDS

For an outstanding list, see 20 Bikes, Trikes and Tandems For Children With Special Needs.

The kid with special football powers who's making headlines

You've seen his handsome face before—maybe in the news or in the slideshow of awesome kids I did over the summer, or perhaps on his blog: I Have Cerebral Palsy...So What, I'm Still Awesome! Eighth grader Jack McGraw of St. Charles, Illinois, has been at every game and practice of his school's football team, the Hurricane Haines, in the past two years. Earlier this month, Jack made news when he scored a touchdown in the final minutes of a game.

"I felt so good," Jack wrote on his blog. There were even people crying!!! At first I didn't get why it was a big deal but people said I inspire them and that they are so proud of all the boys for treating me so great. I'm glad if I have made people feel good."

Jack's mom, Jill, shared a letter that the dad of one of the boy's on the team sent the local paper. As he wrote, "A person might think this was just about giving Jack an opportunity he normally wouldn't get. However, it was really just the Hines coaches and team (with the the help of Batavia) saying thank you to a young man who has provided inspiration and support as a teammate all throughout middle school. Contributions to a team can come in a variety of forms and truly transcend the importance of the game itself. Jack has certainly made more than his share of contributions...."

Jack, 13, attends Haines Middle School, studying the same curriculum all other kids do. He uses an ECO2 with eye-gaze technology from the Prentke Romich Company and computer for communicating doing schoolwork.

"I've always felt that to some degree, if you treat a kid like he's just like every other kid, he'll be just like every other kid," says Jill. "We celebrate Jack when he is being his smart, funby, caring self, and he gets in trouble when he's being 'difficult,' just like his sister. Life is wonderful and I just feel so blessed to have two incredible children."

I got the chance to ask Jack a few questions; here's what he had to say.

That was one awesome touchdown! Max loved seeing it. Can you tell me when you first got interested in the game?

I first loved football when I was in first grade and the Chicago Bears played in the Super Bowl in 2007. They lost to the Colts and I was heartbroken!

What sort of things have you gotten to do as a member of the football team?

I got to call plays a few times. I mostly get to be with the team and cheer for them.

What was going through your mind when you were rolling across the field with the football in your hand?

Oh my gosh! I can't believe this is happening.

What are your favorite things to do for fun?

I like to play football and basketball with my friends. I also love to play xBox, watch movies and eat!

What's your favorite subject in school?

My favorite subject is Social Studies. I like it because it is really interesting and it is the easiest.

I love the name of your blog! What things would you like people to better understand about kids with cerebral palsy?

I want people to understand that CP isn't that bad. You can still be a regular kid if people treat you that way. We are just kids with regular feelings, too.

What would you like to do when you grow up?

I know this won't happen but I want to be in the NBA. My mom says I could do it, just not as a player. If that doesn't work out, maybe I will make a disability organization.

Is there a celebrity you'd ever like to meet?

I would love to meet Derrick Rose from the Chicago Bulls!!! He is so awesome. He is the best basketball player and was the youngest MVP ever. He actually replied to me on facebook once. It was so cool. I like him because he's really good but he is humble.

Why do kids with cerebral palsy rock?

We rock because we are awesome! We work hard and like to have fun just like everybody else.

Photos/Jill McGraw

What cerebral palsy is and isn't: World Cerebral Palsy Day 2012

Today is World Cerebral Palsy Day. The organizers asked people to submit a brief video or message with an idea for bettering the world for people with CP. One of my most desperate wishes for Max is for people to quit pitying him or being wary of him and just see him as a kid, period. Given that there's no Men In Black type wand I can wave over people's heads, I just have my words. So my contribution today is to share some of what I've learned about cerebral palsy over the years. I hope it helps people better understand what CP is and not feel bad for Max and other kids with cerebral palsy who kick butt.

5 THINGS CEREBRAL PALSY ISN'T

Cerebral palsy isn't a disease. It's a disorder. And it sure isn't catchy, although from the way people sometimes stare at my son, you'd think it is. People sometimes fear what's different, it's true—but Max is a kid, not an alien. He is a rather awesome kid. I'm often asked what, exactly, adults or kids should say to a kid with special needs. Here's what you can say: "Hi."

Cerebral palsy isn't a muscle or nerve problem. It's caused by damage to parts of the brain that control muscle movement and coordination—"cerebral" means having to do with the brain, "palsy" means weakness (there's a good history of CP here). Max's brain damage occurred at his birth, when he had a stroke. Until I had Max, I wasn't aware that your brain controls every muscle in your body (apologies, high school anatomy teacher). But it does, even the ones in your tongue, which is why Max has issues with talking, eating and drinking, along with challenges using his hands, arms and legs. Thing is, Max hasn't gotten the memo that he has physical "issues"—this is the body he was born with, and he uses it the best he can, same as any of us.

Cerebral palsy isn't necessarily a cognitive issue. Some children with CP have intellectual disability; some do not. CP affects everyone in different ways, depending on which part of the brain is damaged. Max has some cognitive impairment. So what if he isn't at the intellectual "level" of other 9-year-olds; he is plenty bright, plenty aware, plenty wily (he is a master at tormenting his little sister). Max learns in his own way, on his own timeline. This year, he started to read, and I couldn't have been more proud. Max does things when he is ready; there is no race to a finish line.

Cerebral palsy isn't progressive. Although the brain damage doesn't get worse, issues with muscles can improve or worsen over time or remain the same. Last year tendons in Max's right foot tightened up and made it turn inward, and he needed a series of casts to help straighten it. It gave us a scare but the casts did the job, and life went on. We're lucky to be living in a time when non-surgical options like this exist, although if Max does someday need surgery to ease tightness (aka spasticity), we'll have that option, too.

Cerebral palsy isn't curable. Not yet, though there's been recent promising research about interventions at birth that could prevent it. But CP is manageable; physical therapy, occupational therapy, speech therapy, and even music therapy have helped Max better function, and continue to maximize his potential. The CP has had no affect on his determination, which is not the least bit impaired. If more people had determination like Max's, a whole lot more would get done in this world.

...AND 4 THINGS CEREBRAL PALSY IS

Cerebral palsy is an umbrella term for a group of disorders. There are three basic kinds: With spastic cerebral palsy (the most common), muscles are often stiff. Max has mild four-quad spastic cerebral palsy, which means all four of his limbs are affected in some way. Those with athetoid cerebral palsy often have slow and writhing or fast and jerky hand, feet, arm and leg movements, and may grimace often. People with ataxic cerebral palsy often have poor coordination and may walk unsteadily and have trouble controlling their arms or hands when reaching for something. Some people have a mixed form of CP.

Cerebral palsy is the most common childhood motor disorder. About 764,000 kids and adults in the U.S. have CP, according to United Cerebral Palsy, and 8000 babies and infants are diagnosed with it each year. About 17,000,000 people worldwide have CP, according to Reaching for the Stars. In case you're wondering, it is less common than autism—an estimated 1 in 268 kids in the U.S. has cerebral palsy, while 1 in 88 kids has an autism.

Cerebral palsy is a disorder that can be detected early on. While signs of CP vary, there are main ones in babies and young children. With those under 6 months old, a lack of head control, stiffness or floppiness, overextending the back and crossed legs are the major signs, per the Centers for Disease Control and Prevention (CDC). Max had stiffness as a baby and still does; it can make movements challenging at times, but it does not hurt him. Signs in babies older than six months including not rolling over, bringing hands together or to the mouth, and reaching with just one hand while keeping the other fisted. In babies older than 10 months old, signs include crawling in a lopsided way and not being able to crawl on all fours. The earlier the diagnosis, the sooner a child can get Early Intervention services.

Cerebral palsy is what my son has, but it does not have him. Max may have cerebral palsy, but he is not defined by it. He doesn't sit around feeling sorry for himself. He just knows to enjoy the life God gave him and that we, as his parents, have built for him. Max's love for his family, learning, riding his bike, watching movies, and downing copious amounts of chocolate ice-cream is as strong as any child's. My love for him is as strong a love as any mother feels for any child.

Ashton Kutcher's twin brother fights to spare kids from cerebral palsy

I never knew Ashton Kutcher had a twin brother, Michael, or that he had cerebral palsy. But now I do and I am wowed. Recently, Michael traveled to Washington, D.C., to push for more research funding for preventing CP. Michael has a mild form that affects his right side, hearing and vision. He's befriended an awesome little girl, Bella, who has more involved CP; she was there with him.

Some 764,000 kids and adults have cerebral palsy and nearly 8000 babies and infants are diagnosed with it every year, according to Reaching For The Stars (RFTS), a nonprofit that advocates for more CP research. It is the most common motor disability in children. And yet, there is no dedicated funding at the National Institutes of Health or the U.S. Centers for Disease Control for cerebral palsy research.

This was Michael's second trip to Washington as Executive Director for RFTS. Curious, I looked him up on LinkedIn because I like to hear what adults with CP do for a living—it inspires me. Michael works as an assistant manager a company that handles retirement services in Cedar Rapids, Iowa.  

"I have to be the voice for a child that literally can't speak," Michael says.

A-men. It's great to have someone with smarts, heart and celeb cache (always a plus) advocating for kids. Cheryl Hines, who has a nephew with CP, is an ambassador for United Cerebral Palsy and on the organization's national board of trustees; she actively fundraises for them. Eva Longoria has a sister with an intellectual disability, and has lobbied Congress to prevent service cuts for those with ID.

"Keep moving the rock on CP on cap hill today brother! Love u much" Ashton tweeted to his brother the day he went to D.C.

"Thanks brother, crushed the rock today !!! much love" Michael tweeted back.

And now, I have a crush on both brothers (and Dave will have to deal.)

Here's how you can easily email lawmakers to support federal funding for cerebral palsy research; the goal is 100,000 emails by the end of May.

On the road of special needs parenting

NOW

"Eeeyah yah ah eeeyah ah ah AH!" says Max.

I'm driving our minivan, and Max is babbling in the backseat. I listen, happily, occasionally peeking into the rearview mirror to watch. I am not sure what he's saying, but there's intonation there and he sounds like he is having the most awesome conversation with himself. He seems to love the sound of his voice.

I sure do; for years, I never thought I'd hear it.

THEN

Max is 18 months old and I am driving him to aquatic therapy, one of the 12 sessions of therapy he gets every week. My boss lets me work at home one day a week and on Friday mornings, Max and I head to the pool at a local children's hospital. He doesn't like it so much, but the warm water helps relax his stiff muscles.

"AH!" says Max from the back seat. "AH! AH!"

I am astounded. Max barely makes any sounds at all, none of that babbling I've heard from babies. The stroke he had at birth caused some serious brain damage. His brain is not like other kids'. That, I know. But I so want him to babble.

I am giddy. This could be the start of the babbling. He is so going to prove those NICU doctors wrong, especially the grim-faced geezer who told my husband and me that we could sign a Do Not Resuscitate if we wanted to.

For years afterward, Max doesn't make a single sound in the back seat.

NOW

"Max, do you want to get ice-cream later?" I ask from the front of the car.

"Eeeyah!" says Max. ["Yeah!"]

I think that perhaps "Eeeyah!" is one of the best words ever. It's Max's version of "YES!" and "HELL, YEAH!" He says it so enthusiastically every time and more importantly, he says it. He has, of course, also mastered "NO." He likes to say it emphatically: "Noooooooooo." It was Max's first word.

I never knew "No" could be such a welcome word.

THEN

I've just come from an appointment at a doctor's, and I have to pull over to the side of the road because my eyes are full of tears. I am tired. Tired of spending all my free time with therapists and doctors. Tired of the hopelessness and despair and thinking that my life will never be OK again. Tired of not getting to just enjoy my cute toddler with the chubby cheeks, bright eyes and big smile. Tired. I sob for a while, Max sleeping in the back seat as cars whiz by, and then I pull out and drive on.

NOW

"Arr wah!" says Max. We've just passed a car wash, one of his favorite activities in the whole wide world.

"You want to go to the car wash?" I ask, rhetorically. Because I know the answer.

"EEEYAH!" says Max.

"How many times do you want to go to the car wash?" I ask, again knowing the answer full well.

"Oooooh," says Max. Two.

I love talking with my boy. We go through the car wash twice.

THEN

Dave is driving and I am sitting in the backseat with Max. He's three. I'm reading that Dr. Seuss book Hop On Pop to him.

"Hop!" I say to Max. "Can you say 'hop?'"

Max looks at me.

"Ha," I say. "It sounds like that! Ha, ha, ha. Can you say 'Ha'?"

Max looks at me.

My heart slumps. Nothing's working—not all the speech therapy, the flash cards, the endless talking to him. The speech isn't coming. Not even sounds are coming. I put the book down on my lap and stare bleakly out the window.

NOW

I'm at home and Dave calls from the car, on speakerphone; he and Max are out running errands. I hear Max in the background, babbling. Dave and I talk, and he hangs up. Then he calls back.

"Max wants to say hello," he says.

"Ohmmmy!" I hear. "Ohmmmy!"

It is the most beautiful word ever.

If the doctors could have told me back when Max was a baby that at 9 years old he wouldn't be fully able to speak, I would have been out of my head with sadness. A 9-year-old who couldn't talk? A 9-year-old still babbling?  

Now, I am only grateful. I'm thrilled that Max has the desire to communicate, thankful for his progress and ebullient to hear him playing with sounds. No matter what lies down the road, I know he will be fine... and so will I.

This is exactly what I want to tell moms who are lost in the fog of grief: It will be OK. Whether your child talks as you consider talking or does it in his own way or doesn't, whether your child walks as you consider walking or does it in his own way or doesn't, whether your child learns as you consider learning or does it in his own way, you will both be OK.

No matter how much pain and despair you feel now, slowly but surely you will get to this place called "acceptance." Because as your child develops, your heart and mind will progress, too:

You will be less sad. Even though at times the hurt will still come your way, it won't be as intense as it once was.

You will quit peering into the rearview mirror of what-might-have-been.

You will stop constantly worrying about the delays and missed milestones and realize that kids with special needs travel at their own speed. There is no race.

You will stop freaking out about what lies ahead and learn to see the wonders of your child.

This is the road you will travel as the parent of a child with special needs. And things will get better as you go along. So much better.

That, I promise you.


iStock/DNY59

Oprah Your Own Show: the winner who could change our kids' lives

Question: "What do you think is the biggest misconception about people with disabilities?"
Answer: "That they're helpless, and that their personalities are defined by their disabilities. I am so many things before I am a person in the wheelchair. Get to know the person, the chair is incidental."

That's Oprah asking the question. And that's Zach Anner, my American idol, giving her the most spot-on answer. He's one of two winners of the Your Own Show competition, and he'll be hosting his own TV travel show: Rollin' Around The World. Zach has cerebral palsy, and he has given me all sorts of inspiration for Max's future.


I've been at an event these last couple of days, and so I missed the big win last night. Here's the previous episode, where Zach and Oprah chatted. I found her treatment of him patronizing at times—that look of extreme concern on her face, that pat on the hand at the end. And the first question she asked ("What made you want to take this on?") threw me. Hel-lo, having your own TV show? Hel-lo, Oprah backing your own TV show?

Perhaps people will give Oprah props for his win. It's great that she gave all the contestants a chance at stardom, but she doesn't deserve special kudos for choosing Zach. He is genuinely funny and charismatic, and he deserved it. That said, this is groundbreaking, and I hope Zach's show will change a lot of misconceptions out there about people with disabilities—and the way our children are treated by society.

I suspect Max will be sending in his application next year for The Purple Show.

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.

Our hopes for our kids (and the dreams we dare not have)

So, something started bothering me about yesterday's post on Zach Anner, the guy in the lead for Oprah's Your Own Show competition who has cerebral palsy, after I read a couple of comments here and on Twitter comparing Zach to Josh Blue, the winner of 2006's Last Comic Standing, who also has cp.



Why, I thought, do we instinctively compare Zach Anner, a funny guy who happens to have cp, to another funny guy with cp? Why didn't any of us compare Zach to, say, Dave Letterman? Or Chris Rock? Or Jon Stewart? Why did we have to compare a guy with a disability to another guy with disability?

And why do I want Max to only grow up to be like Zach? I mean, of course, it would be awesome if Max had Zach's humor and charisma (well, Max already has plenty of charisma, he just can't get the words out). But why am I not thinking that I want Max to grow up to be like, say, President Obama? Or Bill Gates?

I suspect this is not a problem with a lack of imagination. I think it's that sometimes, when we dream about what the future may hold for our kids, we don't let ourselves dare to dream big. We've dealt with disappointment. We don't want our hearts to get demolished again. Some of us may have been worked over by pessimistic doctors, like the ones we dealt with in the NICU, doctors who permanently handicapped our hopes for our kids. Maybe some of you are like me: really pragmatic, head full of research and medical information and doctors' reports. We know that the odds are against our kids. Or maybe we're just so caught up in the day-to-day realities of caring for our kids and their many needs that we just can't see that much past it.

And so we end up hoping that, within the realm of the world of disability, our kids will fly high—instead of hoping that they will soar in the mainstream world. Maybe we just hope they will function and be happy, period; there have been times when I've thought that I will be plenty content if Max grows up to live independently.

So here's what I'm daring to hope tonight: I hope Max grows up to have Zach's sense of humor and charisma. And Bill Gates' brilliance. And President Obama's savvy. With a twist of George Clooney thrown in.

I hope Max has all of that, and more. And I'm sitting here hoping the same for your kids or whatever may lie in your dreams for them...if you dare to dream.

See how funny special needs can be, America?

After hearing about that guy Zach Anner who is creaming the competition in Oprah's "Your Own Show" contest, I finally remembered to actually check out his audition video when alert reader Trish reminded me about it. Thanks, Trish! I was vote # 2,681,487.


I found out tonight that it is humanly possibly to laugh and cry at the same time, because that's what I did when I watched this.

First impression: Wow, that guy is handsome.
Second: Wheelchair? What wheelchair? All you can see is Zach's charisma radiating from the screen.
Third: I hope Max turns out to be like him someday—that mind! That sense of humor! (Zach described his cerebral palsy as being "The sexiest of the palsies.")

Besides the fact that Zach has a really good idea for a TV show and is genuinely funny, I adored how self-depracating he is. It feels so, so good to be able to laugh at cerebral palsy (and you know I try). It's also amazing that America could see a guy with disabilities making light of his situation. Message being, people with special needs aren't just people you cock your head at and think "Awwwww." They are not people to pity. They're people with talents, they're people to be admired, they're people who can kick other people's butts in contests, they're people
who have, hel-lo, the same variety of personalities "typical" people do. It's what I say about Max all the time: Look past his physical challenges and you'll see, HIS PERSONALITY IS NOT DISABLED.

Here is Zach's thank-you-world video on YouTube; stop by his channel to see other amusing videos. Dave, honey, I'm sorry, but I think I have a little crush going on here.

A Little Leaguer with cerebral palsy gets to hang with the Yankees

I just got home from BlogHer, will post about it by Monday, lots to tell! First, I had to tell you about this. A few years ago a friend introduced me to Richard Ellenson, the guy who created the Tango, a groundbreaking communication device. He has a wonderful kid, Tom, who has cerebral palsy. Richard, who at first knew nothing about augmentative communication, created the device to help his son interact with the world.

I was just roaming around Twitter and saw a few people had linked to a story about a Little Leaguer with cerebral palsy who got to hang out with the Yankees this week. I go to check it out and, holy cow, it's Tom! It made me cry, from happiness.

The Yankees also made a $10,000 donation to United Cerebral Palsy in Tom's name.

Richard and Tom, you amaze me.

Overworried (once again)

Here's Max, resting peacefully after he got the pre-Botox anesthesia, probably dreaming about Cars and chocolate pudding. Everything went fine. Max cried at the hospital, they knocked him out, the injections took all of five minutes, he woke up groggy but perked up almost immediately when he saw that Mickey Mouse Clubhouse was on the TV, and then he was home again.

As usual, I worried and worried and where did it get me? Nowhere. I've gotten a lot less anxious about Max over the years, but still, I wish I was better able to keep the worry monster away.

Is there anything that helps relax you when you've got a major worry on your mind? I'd really love to know.

SuperMax strikes again

Thanks for all the well wishes over the weekend. As you read this, Max is either preparing to get Botox, getting the injections or recovering from them.

On Saturday, Max's school "Progress Report" arrived in the mail. It's a rather dense document that lists the goals set up for him, whether he achieved them or not, and how his progress compares to his last report (which was in November). I typically read these thoroughly but try not to take them to heart, as I know that even when something is listed as "Status Unchanged" or "Limited Progress" that could quickly change in the near future.

This time, Max had a bunch of "A's" (for Achieved). Allow me to boast:

Objective:
Max will recognize printed words with moderate cues and 75% accuracy. ACHIEVED!!!

Objective:
Max will recognize numbers 0-10 with 75% accuracy. ACHIEVED!!!

Objective:
Max will sort up to three groups of objects with 75% accuracy. ACHIEVED!!!

Objective:
Max will use his communication device to describe current weather conditions when given a choice of three with minimal cues and 75% accuracy. ACHIEVED!!!

Objective:
Max will learn about the changes that occur during various seasons and will answer questions such as "In the winter, does it snow or is it hot?" with moderate cues and 75% accuracy. ACHIEVED!!!

Objective:
Max will drink from his sippy cup with moderate physical cues during snack and lunch time. ACHIEVED!!!

Objective:
Max will use total communication to request, respond to simple question, greet, turn take and participate in three of four opportunities, given moderate cues. ACHIEVED!!!

Objective:
Max will pull down the zipper on his jacket, take it off and hang it up with moderate-minimal physical assistance and verbal cues 75% of the time. ACHIEVED!!!

Objective:
Max will transtion from the middle of the floor to standing using a half-kneel strategy without upper extremity support or physical assistance. ACHIEVED!!!

Objective:
Max will throw a lightweight ball with two hands to a partner three feet away. ACHIEVED!!!

Objective:
Max will continue to demonstrate extreme cuteness, good cheer, a great sense of humor, determination and prove all of those pessimistic doctors in the NICU wrong. ACHIEVED!!!

OK, that one wasn't on there.

He got a "Good Progress" in every single other objective.

Funny, just this week I was telling a friend that progress comes much more slowly now, but I'm OK with that and nowhere near as anxious as I was about it when Max was little. (Someone calls these little achievements "inchstones"—is it you, Melanie?) Back then, it took a long time for Max to reach milestones, and the wait could be excruciating. Especially because we weren't sure he would achieve them. Remember, we'd been told the worst when he was born. When Max did reach milestones, they were miraculous-seeming—Max crawling, Max walking, Max walking up stairs, Max saying words, Max feeding himself, Max going potty, Max riding a bike.

Progress may come in smaller, more subtle increments now, but it is just as miraculous-seeming.

What I wish I'd known when Max was a baby

Max at ten months doing his best Buddha imitation.

Recently, I got an e-mail from Jennifer over at The Pregnancy According To Jude. She said the blog and Max were inspiring to her, which I was grateful for, and she told me all the heartbreaking stuff she'd been hearing about her baby (like Max, he had a bilateral stroke). Things like Jude might not walk, Jude might not talk. Dave and I were told the same about Max. I got another e-mail from Whitney, mom to little Suze Beth Booze who had encephalitis and resulting seizures. Whitney's also been told the worst by doctors about her little girl.

I know just how they're feeling. You hear so many horrible things from doctors that you're not left with a whole lot of hope. You feel anxious about your child's future every waking moment, and all the while you're struggling to accept that the baby you expected to be like every other baby isn't. I've said it before to other moms, those first two years are the toughest. I wish I'd known back then some of the stuff I know now. And so, Jennifer, Whitney and all the other wonderful moms I have met through this blog, this post is for you. These are the things I only realized in hindsight. I hope they help you, in some way.

• Put away the What To Expect book you may have bought, cancel the "Your Baby This Month" e-mails from Babycenter. Constantly comparing your child to typically-developing kids will only make you despair. Your child will develop at his own pace. As long as he keeps improving, that is the key thing.
• Don't attempt to diagnose your child yourself. Seizures were my biggest fear after Max got out of the hospital. I'd read up obsessively on them, and then convince myself that Max was having one kind or other. Max's neurologist finally set me straight.
• You need to have at least one doctor, ideally more, for your child who besides being wise is also a kind, rational, reasonably optimistic human being. And who also understands what you're going through. Try with all your might to find this doctor.
• If you need therapy, get it. I did. If you need to cry, do it. I did. In the car when I drove Max to therapy appointments, in the shower, as I lay in bed at night. You've been through a trauma. You have to get the grief out of your system.
• Accept help. I am a pretty independent person who likes to do things myself. But after Max was born, and I was feeling overwhelmed by all the doctor and therapy appointments while adjusting to having a baby, I let my sister do the housework. I let my friends look up information for me. I let Dave spoon-feed me dinner as I breastfed Max. They got me through that first year.
• Try hard, try so very hard, to enjoy your child. Look at how delicious Max was. I knew it, but I didn't enjoy him as thoroughly as I could have because I was so consumed with fear about what he would "be" like. All of you have beautiful children. Stop peering so hard into their future, and enjoy them in the here and now.

xo

Welcome to our Florida vacation!

Sanibel Island and Captiva Island are exquisite in a very untouched, natural sort of way. We're at South Seas Island Resort, which has 330 acres. It is both spectacular and kid-friendly, a rare combination. Here's Sabrina, going for her morning jog.


The part of the resort we're staying at looks out on a harbor.


We spent most of the day hanging at one of the pools. Max splashed around like a maniac. He's getting very good at kicking, I hope he can swim someday.


He always likes to try on Dave's sunglasses...


...and my hat. I know, it's large. I get burned to a crisp if I'm not careful.


Sabrina wanted to know why everyone doesn't wear a bikini, like she does. She still has that adorable little-girl pot belly, and it looks great in a bikini. Why doesn't that work when you're a grownup?

Dave and I love to travel. We used to do lots more before we had kids, it's one thing I miss from pre-parenthood. We hiked in Patagonia, Chile, drove around Ireland, honeymooned in Bali. One of our favorite trips ever was a cruise we took in Alaska's Glacier Bay. We saw whales, dolphins, seals, puffins, black bears, you name it. If you ever go, choose a small cruise ship, not one of the biggies. The one we went on is out of business, but Cruise West is supposedly good.

What's your all-time favorite vacation?

Good doctors for special-needs kids vs. bad ones

You know those Wordless Wednesday posts other blogs do? Well, here at To The Max it's Word-Filled Wednesday, cause I've got a lot to say. Thanks again to everyone for the reassuring messages about Tuesday's seizure scare. I was sorry to hear that some of your kids have been having them.

On the train to work, I called the nurse at Max's school and asked her to describe what she was seeing that had concerned her. Turns out it was this weird movement Max occasionally does in which he grimaces, stiffens and raises his arms, all at once. The whole thing happens in maybe two seconds, then he relaxes and he's back to usual Max.

I told the nurse that he has been doing this for years, and that I had pointed it out to the neurologist when I first saw it. And then I explained why sending home forms titled "ASSESSMENT OF SEIZURE ACTIVITY" can be very unnerving to a parent and that going forward, I would like a call. Later on, I spoke with our neuro, whom I absolutely adore. Dr. C is smart, nice, sane, funny, down-to-earth. Every mom of a child with challenges needs a Dr. C in her life. I told him what had happened and he basically said that at worst, what I was seeing is a tic but because Max is wired differently than other kids, what might just be a shoulder shrug for a typical child would involve Max's shoulders along with his arms and mouth. (Interestingly, studies show that one out of every six boys in elementary school has tics.) There is no kind of seizure that fits the description of what Max has been doing.

Dr. C is amazing. In contrast, I think back to this one doctor I visited when Max was three months old. He was a neonatologist, someone who specializes in the care of newborns. In the course of examining Max, this doctor told me that the only other moms he'd seen whose babies had suffered strokes were crack moms (yes, he said that). And then, when he finished looking Max over, he told me that Max's limbs were very stiff. He told me that a bilateral stroke was a serious thing (no shit, Sherlock). And then he said "His future looks ominous." That's when I started crying. He said, "Hasn't anyone told you that yet?" I couldn't even respond, I was so despondent.

I ended up seeing the social worker in his office afterward. And as I sat there blubbering my heart out, I got good and mad. I told her that he had no right to use a word like "ominous," that no doctor should ever use that word, that babies' brains are plastic, that Max had potential. And if I didn't have HOPE, what did I have? I walked out of there and never came back.

I do have fantasies about marching back into his office with my walking, communicative, bright, personable Max and saying "SEE?!" But a doctor like that, well, he'd just look at Max and say: "He's not talking, and his limbs are still tight." Who needs that?

I'm curious, tell me about a doctor you've taken your child to who you adore—and a doctor who you wish you'd never met.

Scared of seizures

Ah, how much can change in a day. Yesterday, it was 65 degrees and Max seemed fine. Today, it is a snowy winter wonderland and I am a little panicky about the possibility that Max is having seizures. I fear them. No, make that, I am terrified of them. Max had seizures at birth and a grand mal at one and a half, and the experience was just as traumatic as those two weeks at the NICU after he was born.

When I was at Max's school last Friday for his birthday, a couple of aides mentioned that they noticed he sometimes stared off into space. I've seen Max do this, but I can snap him out of it by saying "Max!" The underlying fear here is absence seizures.


Here's a video of a girl having absence seizures. They're subtle, but watch how she spaces out and her repetitive jaw movements. I first saw this video over at Fighting Monsters With Rubber Swords; watching it was worse than seeing a horror movie.

The second I left the school, I called the neurologist. Who got back to me and confirmed that they weren't absence seizures if we were able to break him out of the trance by calling his name, by touching him, by giving him a new visual target.

So, I shot off an e-mail to Max's teachers, therapists and the school nurse mentioning the above and saying they should try to break his stare if they see him doing it. Tonight, I came home from a work holiday party to find a form in Max's school book from the nurse. The top of the form says, in all caps, "ASSESSMENT OF SEIZURE ACTIVITY." My heart skipped a few beats. I read down the checklist. She noted he was staring, his arms and hands would stiffen, and that in the "post-seizure state" he would spastically move his arms. And that "this is worth reporting to the neurologist." Nowhere did it mention whether she'd tried to break his stare. Which is why I am sitting here at 12:10 a.m. and worrying.

I know this nurse means well. Yet I am agitated that this Form Whose Name Shall Not Be Spoken was sent home to me, no phone call. Even if she is just making observations and not saying it definitely is seizure activity (and she just chose to make her notes on an unfortunately named form), I tend to be very, very literal about this sort of thing. I also know that I am agitated because I am scared that what she is saying is true. It seems incomprehensible that my sunny little boy could be having seizures in front of my eyes.

I am going to sleep now, it's what I need to do.

Monday Morning Confessional: Germs don't bug me

This weekend we hung out with friends and their cutetastic 11-month-old twins. At one point, I noticed Max chewing on Cheerios one of the babies had already slobbered on and I let him keep going. I have a high tolerance for cooties, especially when Max is actually feeding himself. (Linda over at All & Sundry just did a great post about dealing with sick kids and, even more trouble, sick husbands.)

When Max was a tot, he didn't go through that stage when kids shove every little thing into their mouths just for the hell of it. He's orally sensitive, which is common among children who have cerebral palsy. So Dave and I gave him total freedom to explore the world in other ways, even if it meant letting him crawl on the mall floor. The first time Max ever pulled himself up to a stand—a tremendous milestone for him—was on a toilet seat in our first-floor bathroom. After that, he and the toilet seat were BFF's. (If you feel like chucking your bottle of Purell at me right about now, I understand.)

Something snapped after Max was born. He had a bilateral stroke; I had bigger issues to worry about than some measly germs. I did the usual baby-sanitizing things, I just didn't obsess, and once he was out of infancy I obsessed even less. We're lucky that Max and Sabrina aren't prone to getting sick—if they were, I'd probably feel differently.

How germphobic are you?

Max's best friend in the whole, wide world

It's Sabrina, of course. Like any bff's, they giggle together, sometimes have it out with each other and can usually be found hanging at the local bar. (Kidding! They never fight. Right.) Sabrina's very protective of him. She speaks to Max in this sing-songy voice when he's agitated (it sounds like "Maaaaa-aaaaaax"), strokes his hair with her chubby little hand when he's hurt and proudly announces when he comes to her school, "That's my brother!" She's two years younger than he is and yet, because of his disabilities, she's more like his big sister.

Max doesn't have the biggest social life; he visits with my friends' kids and there's this great special-needs "kids' camp" he goes to on Sunday mornings, but I haven't gone out of my way to make playdates with kids who have cerebral palsy or other disabilities. This leaves me feeling guilty, and I keep meaning to make plans with kids in Max's class (he's at a school for the disabled). Then somehow, I never do. Maybe it's denial. While I like having Max around normally-developing kids, I also think it would be good for him to be with kids more like himself. I need to get going on that. Sabrina will understand.

Word of the day: O-BA-MA!