Life as an adult with cerebral palsy: a guest post

This post is by Kyle Khachadurian, Community Coordinator at the Cerebral Palsy International Research Foundation and a generally great human being.

Okay. Here we go. 3, 2, 1. Aaaand wake up. Eyes open? Good. Now sit up. God, why am I so tired? I’ve been awake for 30 seconds and I already am feeling the weight of the day on my body. Get out of bed. Find your balance. Dammit, I always stumble out of bed. Now walk to the bathroom.  Let the day begin.

That’s how I start every single morning. I have mild Cerebral Palsy, and because of it my mornings suck.

But the rest of my life isn’t so bad.

Cerebral palsy is a condition that affects 1 in 500 people. It’s used as an umbrella term for a variety of disorders that manifest themselves in different ways, usually caused by some kind of brain damage either before, during, or shortly after birth.  But if you’re reading this blog, I’m guessing you probably know that.

People with CP all have that one moment. The one where we realize “I’m different.” This happens to each of us at different points in our lives, but it’s the first step on the journey of our acceptance of our disability.

I was one of the lucky ones. My moment was in nursery school when I realized everyone was just like me. I suspect my parents’ intention of putting me in a special nursery school was supposed to make me feel like having a disability was normal, but that didn’t keep me from noticing other people were very obviously not like me even if these people were.

At age 3


Growing up, I was placed in a school for people with physical disabilities. I was among the few in the school who could walk, and so I immediately felt out of place. But how could I? The vast majority of the students there had CP, so why did I feel out of place? 

Because my cerebral palsy is so mild, I don’t share many of the same struggles as people with a more “severe” case of CP, but mild CP does come with its own set of challenges. It’s very difficult to “see” my CP, and if you know nothing about it, you probably won’t. Everyone with an invisible disability has heard the phrase “you don’t look disabled”, as if the observer’s incorrect assumption somehow trumps you talking about your disability.

My entire life changed when I went to college. My whole life I had been coddled, and I wasn’t even aware of it. My grades were terrible because I had no idea how to take notes. I had no friends because I’d grown up in an environment where friends were just “given” and not made. I had no idea how to socialize because I’d hardly ever spoken to anyone without disabilities before.

I remember when I made my first friend. I was so excited that the first thing I did was call the girl I was dating at the time and let her know. She didn’t understand why I was so excited. When we had our first conversation, my friend apologized for walking quickly. I remember thinking he saw my limp and noticed I was disabled, so I told him that I had cerebral palsy. That was when he told me that people tell him that he walks too fast all the time, and that he had no idea what I was talking about.

Oops. I just outed myself as disabled. I’ve never had that problem before. He’s going to think I’m strange now. But he didn’t. He just asked questions. “What is CP?” “Did you always walk this way?” “So, can you have sex?” “Is your girlfriend disabled too?” At first I was taken aback by his bluntness, but I learned very quickly that he was asking because he genuinely wanted to know me.

After college, I landed an internship at United Cerebral Palsy (UCP)’s national office in Washington DC. I stayed with a friend in Maryland who had CP “like me”, and it was during my time there that I learned something about myself that changed my life. I was living every single day in pain and I didn’t even know it.

When I was a kid, I had various orthopedic surgeries to help improve my walking. Anyone who’s had orthopedic surgery knows that when it rains, your bones sometimes ache in the affected area. I asked my friend to give me an aspirin for my “CP pain” because it was raining. She laughed at me, gave me a pill, and said “you don’t take aspirin for CP pain, you take this!” So I did, and the feeling was like getting your first pair of glasses late in life. Except instead of “oh my god, the trees have leaves!” it was “oh my god, the world doesn’t feel heavy!”

I didn’t know the world wasn’t heavy until that day, and I didn’t know the heavy feeling was actually chronic pain. The drug my friend gave me was called Tramadol, and I now have my own prescription. Later I would learn that half of people with CP have some form of chronic pain, and that almost nothing is known about it.

Now I work a full-time job at the Cerebral Palsy International Research Foundation in New York City. My life, for all intents and purposes, is “normal” as can be. I take the subway to work, I come home, I sleep and I do it all again the next day. If you saw me on the street, you’d likely never know that I was different, and that’s something that a lot of people with CP cannot say.


If you’re a parent of a child with CP, know that even though you won’t always be able to be there for them when they grow up, the best thing you can do is to teach them to self-advocate. I cannot stress this enough. Teaching your child to speak for himself will have an enormous impact in his life. There will be times when your child is going through things that you are incapable of understanding. That’s okay. Sometimes we just need someone to listen to us. If your child with CP is already an adult, let them be an adult. Having CP isn’t the worst thing in the world. For us, it’s the only world we know.

Finally, you’re doing a good job. We love you, and we know that caring for someone with a disability is probably just about as weird as having one. 

On living with Joy and Sadness

We got to see Inside Out, and everyone liked it but I think I did most of all. It has Pixar's usual mix of compelling characters, vivid imagery, clever dialogue and truly amusing moments, along with life lessons—and one of them really hit home.

Without giving too much away, the movie is about the emotions that rule you: Joy, Fear, Anger, Disgust and Sadness. An 11-year-old named Riley has to contend with them all when her family relocates to San Francisco from Minneapolis, Minnesota after her dad gets a new job.

One of the film's messages: Joy and Sadness can co-exist. It got me thinking about my journey with Max. I mean, yeah, the joy and sadness an 11-year-old experiences are wholly different than the kind the parent of a child with special needs grapples with, but like Riley I had to learn to co-exist with Sadness.

After Max was born there was mostly despair, which was even more upsetting. The birth of your first child is supposed to be one of the highlights of your life, only something unimaginable happened to Max and we didn't know what his future held. I'm usually a pretty upbeat person, and for the first time in my existence I struggled to lift myself up. I actually wasn't sure I'd ever be happy again, which sounds horrible to say but that's how down I was.

I had to work at tapping into the joy.

Taking lots of photos of Max helped; there it was, his undeniable cuteness in color. I'd take long walks around the neighborhood to clear my mind (and get an endorphin rush). I saw a shrink to help get the grief out. Going on occasional getaways was perk-inducing, too. Dave and I have always loved to travel, and a long weekend in the Massachusetts Berkshires at a friend's home when Max was seven months old was just what we needed to escape—and get some perspective—on the realities at home.

The sadness diluted with time. As Max developed and so did I, I got stronger. I learned to deal with the pangs of heartbreak that cropped up, and still do. I realized that my anguish about what happened to Max and his resulting challenges had nothing to do with my faith in him, my hope for him or my love of him.

Max brings me so much joy. Those moments of sadness about his past heighten my awareness of his present. Because he is an awesome kid, and he is mine.

Image: Pixar

The Special Needs Blogger Weekend Link-up: Share here!

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What will this boy teach the baby? Lots.

"Having another kid around will be a good influence on Max," people have been saying. Perhaps they think that seeing a sibling learning to speak and develop could help Max with his own speech and development. Yes, I'll bet the baby will rub off on him in one way or the other. But I also think Max is going to have an amazing influence on the baby.

Max's school music teacher recently sent a video of him playing You Are My Sunshine on a keyboard; Max asked her to tape it and sent to me. This is because I'd let him know that the baby (five months along!) can hear things now, and he wanted him to listen up. "We had quite the conversation about singing and playing music for his baby brother," she wrote. [Swoon.]

Max may very well teach his little bro a thing or two about the keyboard, along with fire trucks, reading, riding a bicycle and the joys of photo-bombing. He has skills to share and show off, of course, along with a cheerful, can-do outlook on life that I'd be thrilled for the baby to take after. Sabrina is going to be an incredible big sister; soon enough she'll be showing her brother how to make rainbow loom bracelets, jump on a pogo stick and write stories. Hopefully, she will not show him how to order stuff off Amazon.

For sure, Max will help this child to grow up knowing that having a disability means you still have abilities and talents. That in many ways, kids with disabilities are like other kids and that differences are what make you unique. And that you can be disabled and plenty annoying, as siblings know just how to be—in other words, perfectly typical.

What I did on summer break: Special needs parents edition

What you do during summer "break" when you're a special needs parent:

• Get child dressed
• Attempt to get child to eat something other than Chocolate Rice Krispies for breakfast
• Give up and give him the Chocolate Rice Krispies; encourage self-feeding
• Remind child not to repeatedly kick table legs
• Give up and let him kick table legs
• Wonder how you are going to spend the entire day and vow not to let him watch too much TV
• Repeat child's favorite catchphrase and/or answer same question from child eleventy billion times in a row, then do it again an hour later
• Settle child in front of TV so you can have a little time to yourself
• Spend said time to yourself chatting with insurance company rep about errant bills and payments
• Drag child away from TV and take a walk
• Make a couple of therapy/doctor appointments on cell phone as you stroll
• Call the pharmacy, while you're at it, to reorder child's meds
• Repeat child's favorite catchphrase and/or answer same question from child eleventy billion times in a row, then do it again an hour later
• Serve child lunch; encourage self-feeding
• Remind child not to repeatedly kick table legs
• Give up and let him kick the table legs
• Take a quick, much-needed break and spend it by tracking down copies you made of insurance claims sent because you knew something would get lost
• Play with toys or games for five minutes and/or until child's attention wanes
• Consider doing some of the therapeutic exercises the therapists have recommended and decide they can wait until tomorrow
• Google "Summer activity ideas for kids with special needs"
• Decide most of the activities require too much effort, place child in old-t-shirt, head outside, put on sprinkler, done
• Sit on lawn chair and wonder what sort of more stimulating activities other special needs parents are doing with their kids
• Stare down at toes and try to remember when the last time was that you got a pedicure
• Head out in car to get ice-cream and pray there's no long line that could lead to a meltdown
• Aimlessly drive around your neighborhood
• Repeat child's favorite catchphrase and/or answer same question from child eleventy billion times in a row, then do it again an hour later
• Stop by the library and slightly despair that your kid ends up parked in front of the computer for an hour instead of exploring books
• Check out books to read at bedtime/make yourself feel better about the computer time
• Serve child dinner; encourage self-feeding
• Remind child not to repeatedly kick table legs
• Give up and let him kick the table legs
• Let child watch more TV. Wonder how much TV the other special needs parents let their kids watch.
• Give child bath, get dressed for bed.
• Read one of the books from the library and feel slightly better about having done something educational, no matter if the book was "The Story of Farts"
• Kiss child goodnight. Sit down at kitchen table and stare vacantly into space.
• Treat yourself to a piece of chocolate and an iced tea, because you are extravagant that way
• Feel a little guilty about how psyched you are that his Extended School Year program starts again in a couple of weeks...but not that guilty.

Image source: Flickr/obvio171

I want him to know how far he's come

Max got a haircut the other day, which was overdue given that his bangs have been impairing his vision. I think he looks too cute with floppy hair and thanks to Max's newfound fondness for hair gel, his 'do was actually pretty suave.

Hey, babe, come here often?

Going to the barber shop with Max—along with various local restaurants, the pediatrician's office and our neighborhood movie theater—always makes me realize how far he's come. He used to wail and generally melt down at these places, mostly due to sensory overload but also from fear of the unknown. 

Getting a haircut was a particular form of torture, for him and for us. Dave had to sit in the chair and hold a wailing Max on his lap. Max tended to leave the salon with a post-modern look, as in, it was very ragged-y because he'd been twisting around the entire time and the hapless stylist couldn't get a straight line. 

This time, Max made a beeline for his favorite seat (thankfully, it was unoccupied). He sat serenely as the stylist cut his hair, stopping her only to note that he had to have hair gel. He giggled when she buzz cut the back of his hair.

I felt so proud of this grown-up kid. And I wanted him to feel good about himself, too.

"Max, do you remember when you were little and you used to cry when you came here?" I asked.

"Fireman Max!" he answered, as he does when I forget to address him by his correct (though not yet legal) name.

"Fireman Max, do you remember that you used to cry when you came here?" I asked.

"Yeah!" he said, tearing his eyes away from his reflection to look at me. 

The guy who owns the barbershop shot me a wry look, because he for sure remembered Max's haircut meltdowns. 

"And now, you're grown up and you're doing a great job of getting a haircut!" I said. 

"YEAH!" he said, grinning. 

"YEAH!" said the stylist. 

Max looked very grown up after the cut, and it made me kind of wistful. My baby. But oh, so handsome. 

This cartoon memoir about becoming a special needs dad nails it

Father's Days, an animated memoir by British cartoonist Bob Moran, is NSFW (Not Safe For Work). Because if you are the parent of a child who has been in the NICU or a parent of a child who had a stroke at birth and/or who has cerebral palsy, you might get pretty worked up.

Moran is the political cartoonist for the Saturday and Sunday Telegraph. His daughter suffered Hypoxic Ischemic Encephalopathy at birth, brain damage that occurs when a newborn's brain doesn't receive sufficient oxygen and blood. His cartoons capture the heartache, grief, helplessness, stress and bewilderment of what ensues, from the feeling of the parenthood you'd envisioned slipping away to the weird silence that greets you when you bring your baby home. You are all alone to watch over him or her, with no beeping monitors. I can vividly recall the sound of that silence.

It is particularly touching to hear this from the p.o.v. of a dad, who wanted to be strong and hero-like for his family.

And then: Things get easier. You get into the swing of all the doctor and therapy appointments. Maybe there are more challenges to come. But, then, you have changed as a person—as Moran did, as we all did—and you can deal. That story, you know.

 

Image by Bob Moran/Father's Days video

The Special Needs Blogger Weekend Link-up: Hey, good looking

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This dad deserves props 365 days a year

Father's Day is Sunday, and here I am, giving Dave dad props—although he deserves them year round. (Truth: I'm more likely to be found pestering him about taking out the garbage.) Dave is an amazing father to both our kids. But he deserves special recognition for all that he does for Max.

Because he regularly caters to Max's wants and needs, whether it's taking him on a joy trip to Chicago or a fire station, picking him up at school to go to a doctor's appointment or just sitting with Max in our minivan in the driveway as he pretends to drive. Oh, and he makes up fun songs, too—cue: "We're going to Chicaaaaaaago! And we're gonna have a gooooooood time!"

Because from the get-go, he has been a hands-on dad. Even as other friend's husbands didn't do diapers, Dave did—and joked about Max's man-sized poops. He fed Max, and still helps him at mealtimes. He gave him baths as a little kid and now, showers. There is nothing this guy won't do to care for this boy.

Because he has always accepted Max for who he is, instead of who he dreamed he would be. During Max's first year, as I mourned what had happened to him, Dave kept telling me to look at the beautiful child that he was—and reminded me of his potential.

Because he has extreme patience for easing Max into new situations, or just hanging with him when Max opts out of an activity.

Because he doesn't sit around talking about how he wishes he could do "typical" Daddy-son things, like toss around a football or play baseball, because he and Max create their own "typical": They play T-ball, enjoy amusement park rides, go to street fairs, make fart and burp jokes.

Because he never gets tired of the physical labor, whether it's lifting Max into the car (boyfriend is getting heavy!) or carrying Max around the deep end of the pool.

Because when Max decides he needs to do something again and again—say, ride the shuttle bus at a resort where we are on vacation or push an empty stroller around the block—Dave will endlessly do it with him, unlike Mommy who will inevitably say, "One more time and we're done!"

Because when Max gets freaked out by a crowd or loud noises, Dave knows just how to kiss and cuddle him calm.

Because for years, he's stayed up late to program words, phrases and photos into Max's electronic devices to enable him to communicate.

Because, better than anyone in our family, Dave understands the importance of hair gel and has taught Max how to swipe it into his hair.

Because he loves—genuinely loves—to take Max on food adventures, just the two of them.

Because Max has decided that the perfect Father's Day celebration is a movie (Inside Out) followed by bowling and sushi with Daddy, and Dave is happy to oblige. As he always is.

There's an actual baby in there!

"The baby looks fantastic!" the doctor said, and relief flooded through me. Before my 20-week detailed anatomy ultrasound had started, I hadn't been particularly worried about things being OK. But as the technician moved the wand over my belly, looking at various baby body parts, I'd started thinking about what could go wrong.

I've been pretty calm about the baby's growth, as I was during my pregnancy with Sabrina. Getting anxious about fetal development just isn't a place I let myself go to and besides, I'm at a high-risk practice so I have the confidence of being in excellent hands. During my pregnancy with Max, I wasn't particularly concerned, either, because I never imagined anything could happen. I had a healthy pregnancy, Max had looked good all along. Hell set in only after the delivery.

I've started feeling the baby move, muffled little flutters and jerks. This is the part where it all gets real. Yes, there is an actual living creature inside me. Who seems to particularly appreciate it when I eat pasta and sugary stuff. (I've moved passed the potato salad stage and have been craving peaches, Thai noodles with peanut sauce and pickled tomatoes. Not together.)

"Can you see the corpus callosum?" I asked the technician when she got to the baby's brain, and she looked surprised, likely because she doesn't get many expectant moms inquiring about that. But I know better than most what can go wrong with a brain. Yes, the corpus callosum was in place.

Dave rushed in, late from getting stuck in traffic. He stared in wonder at the monitor as the baby moved around, and watching him watching the baby made me happy.

Fun fact: Your body temperature increases 10 to 20 percent during pregnancy, my doctor told me. Combine that with Eau de Summer New York City (as in, the stench of garbage), my heightened sense of smell and the humidity and it's gonna be a good time!

At home, I pulled out the long strip of ultrasound photos, and the kids examined them.

"Is he healthy?" Sabrina wanted to know. I think she has some anxiety about the baby, perhaps because she knows something happened to Max at birth. I plan to talk about it with her.

"Yes, the doctor says he's fantastic!" I told her, and she grinned.

Max wanted to know if the baby could hear. I said he could. So Max leaned over and said, speaking to my belly button, "Hi!"

Every pregnancy is different in its own way, but the kids' excitement is really making this one special.

Distraction is in the details

Last night, at 11:05 p.m., I was searching our kitchen's junk drawer for a Sharpie. I found a couple of black ones but I needed the red kind so I could write "Fireman Max" on his new bottle of body wash.

OK, let's dissect that:

1) Yes, I write "Fireman Max" on every bottle of body wash and shampoo Max uses, per his request. It's not that he's worried that Dave will use up his precious Orange Petalooza body wash, it's that he likes seeing his name in print.
2) Yes, I try to use his favorite color.
3) Yes, I make sure to use permanent marker so it won't wash off.
4) Yes, this is the sort of thing I do at 11:00 at night as Dave binge watches the latest Orange is the New Black episodes.

Detail-oriented: that's me. Wants to please her kids: that's me, too. Seriously needs to work on relaxing more: OH YES PLEASE, RELAXATION FAIRY GODMOTHER, WHERE ARE YOU?

And then there's this: Sometimes, I immerse myself in chores and minutia so I can avoid thinking about the biggie stuff. In this case, that would be the results of Max's recent school evaluations. Three, to be exact: Speech-Language, Educational and Psychological. "Heartbroken" does not begin to describe how I felt after reading them, and I've procrastinated sharing here because they have so shaken me. That's pretty much all I can stand to write until I further wrestle phrases such as "His ability to be understood is very limited" to the ground.

Meanwhile, there are bottles of body wash to label. I settled for a black Sharpie. I wrote "Fireman Max" on his toothbrush handle, too, for good measure. Then I headed to the living room to catch a bit of Bed Bugs and Beyond, and for a little while longer I didn't worry.

If you're happy and you know it

This weekend was our neighborhood block party, an annual event in which neighbors and their kids flock to our block to mingle, BBQ, picnic, jump around in a bouncy house, feast on contributions to a baking contest and participate in the world-famous famous egg toss.

As usual, I marveled at how far Max has come. He used to be afraid to even come out of the house for the block party. But on Saturday, he wandered around like a boss. Actually, mostly he pushed a ride-on car another family owned, because pushing stuff around is still one of his favorite activities in life.

This year was different in that Max decided to give a little kid a ride, which was awesome. And then another little kid jumped in and there was Max showing two tots a good time. Progress!

This year was not different in that, as I sat at a fold-out table, I watched a group of boys around Max's age playing a game whose basic purpose was to clobber each other with a big rubber ball. They were laughing uproariously.

I watched Max roll his car past them, and I felt a little lonely for him.

But Max, he was perfectly pleased to do his own thing. He chatted with some adults and informed them I was having a baby. He downed mac 'n cheese and a whole lot of lemonade. He laughed at the egg toss. He got hot and sat quietly in a folding chair on our walkway, waiting for the fire truck to show up for a visit.

I sat next to Max, held his hand and thought about how I sometimes project my ideas of happiness on him. I used to do the same with my parents, who separated when I was 12. Each ended up living alone, and I'd occasionally feel pangs of sadness for what they were missing. Over the years, though, I came to terms with the fact that it was the way they wanted to live, and just because I wished for them to find new partners that wasn't their idea of contentment.

I am still gaining that kind of acceptance for Max. I know that he is happy in his own way, same as anyone. So what if he wasn't rough-housing with the boys that afternoon—he had fun.

And then, joy of joys, the fire truck appeared. Max greeted Firefighter Sal and Firefighter Allen. He sat in his favorite seat as parents lifted their kids in and out. He helped close up the doors when it was time for the truck to leave, and then he cheerfully waved goodbye.

"Block party next year?" Max asked at bedtime.

"Yes," I promised, and he went to sleep with a big smile on his face.

The Special Needs Blogger Weekend Link-up: 3, 2, 1, post!

What to do if you're new here

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

Like this: What do you see when you watch this video?

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What do you see when you watch this video?

Sometimes, I have this out-of-body experience when I watch videos of Max. Nothing to be alarmed about, no need to give me the name of a psychiatrist. It's just that I start thinking about how I see him...and how I might have viewed a kid like Max if I'd never had a child with special needs. Or how people who have no kids with disabilities in their lives might see Max.

Take this video from yesterday of the kids playing ball in our backyard.

If I'd never had Max, here's what I might have most noticed in a video such as this: a cute kid who can't really talk mostly failing to catch the ball, with his sister kindly helping him out. I probably would have felt badly for that boy.

And now, this is what I see:

A cute kid (Fireman Max!) who is communicating with his sister.

A sister who is treating her brother like any other kid in need of pointers for catching a ball. Not out of pity—just your average sibling love, and your average sibling "I'm done now!"

A child who's super-focused on the activity at hand.

A child confidently successfully bending over to grab a ball, no mean feat for a kid with both fine- and gross-motor-skill impairment.

A child throwing a ball with both hands—again, not easy for a kid with physical challenges. Score!

A child succeeding in catching a ball using both hands. He caught the ball! He caught the ball!

A child who isn't deterred by fails—and who keeps his sense of humor.

A child who, like any kid, likes to play.

It's like that famous optical illusion in which you either notice a young lady or an old woman. When when you jerk yourself out of your usual way of looking at things and consider it with a different eye, you can see it in a whole new light.

Ability, not just disability. Efforts and achievements to be celebrated, not pitied. Max has transformed my perspective of disability. And one of my greatest goals as his mom is to help other people do the same. 

Good ways to thank your kid's teacher

Max's school is over in a few weeks, and I've been thinking about a good way to show his amazing teacher my appreciation. I gave money to a class gift, as I did for Sabrina. I contributed to the school staff appreciation lunch. But I'd like to do something special for someone who has been a tremendous influence on Max, and not just scholastically.

A while ago, Max started telling me he was a "smart guy." That was because his teacher, who he's had for two years now, is always telling him that. She cares so much about his success. She is open to requests, like when I thought Max needed more homework to help reinforce math. She is always quick to respond to emails. She has an excellent sense of humor, the kind of teacher that parents are grateful for, too. Nothing seems like quite enough to thank her for all that she's done for Max.

I was reading a Facebook string of comments the other days about teacher gifts. Parents often give gift cards for spa treatments. But hands down, said people who are actually teachers, the most memorable gifts are notes from the parents and the kids themselves.

Max and I will each be writing cards, and likely giving an amazon.com gift card, too. One fun thing I've had the kids do for our babysitter over the years that I might try for his teacher is a Top 10 List Of Things We Love About ____. There's also writing out an acronym, which the kids enjoy. Bonus points for making them spell! Like this:

Just so nice and friendly
Also helpful
Nobody is like her

Pinterest is packed with ideas, including boards (with links to free printables) such as this Teacher Gift Ideas and this one, Teacher Appreciation Gift, Teacher's Appreciation Gift Ideas and a bunch more.

This plant pot sign is $4.50 on Etsy for a downloadable PDF (you supply the ruler), but you can make your own, too.

What are you planning to do for your child's teacher? If you're a teacher, what would you most want?

Image source: Flickr/Nerissa Alford Designs

He's having a good hair year

"Max! You look so handsome!" I squealed as I pulled up to the house in the car and saw Max and Dave walking down the front path. Dave had done Max's hair and it was parted in the middle instead of to the side. Also, Max is in dire need of a haircut and I always think he looks the cutest when his hair is at its floppiest.

Max trotted over to the car. I thought he was going to give me a kiss, but he leaned over, peered at himself in the rearview mirror and grinned at his reflection. I sort of thought he was looking like Keith from the Partridge Family, aka my former crush. When Max wakes up in the morning, he's more Paul McCartney 1964. With his hair completely swept to one side, early Justin Bieber. Which is all to say, Max has celeb hair. 

It's totally typical tween behavior to care about your appearance. But what's also cool is the self awareness; Max hasn't paid much attention to his looks over the years. Dave and I have often wished that he cared more about the fact that he occasionally drools. That still doesn't bother him. But for sure: The hair must be in place.

Dave's had an influence. Max would watch him slicking gel through his hair in the morning, and started asking Dave to do that for him. There was also a practical concern: Max thought his ever-present Fire Chief hat looked better with his bangs out of the way.

I'm looking forward to the the physical (and emotional and cognitive) self-awareness coming along. Dave and I joke that we wish Max were more aware that he possesses a right hand, the weaker one—therapists tends to call his "helper hand." He typically tries to do most things solely using his left hand and we're always chanting "Two hands, Max!" Another mom I know whose kid with cerebral palsy has the same issue teases him that his hand will fall off if he doesn't use it more often.

Meanwhile, at least the hair is motivating him.

8 summer fun ideas for special needs families, plus a $75 gift card giveway

Summer is prime time for family fun, but it doesn't always pan out the way you think it will (as families of kids with special needs well know). The people at P&G and Babies "R" Us asked me to share tips I've learned over the years. Read on, and enter to win a $75 Toys "R" Us gift card (also good at Babies "R" Us) to jumpstart your summer fun.

1. Keep a bag of toys and books in the car
Include a few gift-wrapped ones, too. We have a cloth tote with a few surprises for the kids to play with, so they are not glued to the DVD on road trips—or they could use a little distraction when we hit a restaurant. Max's sensory issues used to get the best of him and he'd sometimes hesitate to go in, but if I pulled out a wrapped surprise toy I had a better chance of enticing him in. Some of the stuff in our bag: books about fire trucks, a mini Etch A Sketch, a Bruin Revvin Rescue Friction Fire Truck (see a theme here?!), a Color Wonder Planes Fire & Rescue Book with magic markers, a drawing pad plus sheets of assorted stickers.

2. Store wipes in the glove compartment
We have long kept a stash of Pampers Sensitive Wipes in the glove compartment. They're handy for ice-cream pit stops, the roadside BBQ stand your husband insists on visiting despite the fact that he ate lunch a half-hour ago, wiping sand off the kids' feet post-beach and all other situations involving a mess and/or husbands who can't resist BBQ. Also good: a portable stain pre-treat stick, like Dreft's. We still hit Babies 'R Us for this stuff because we get good coupons.

3. Make an activity backup plan
As much as you think the zoo or adventure park might be a fun outing, your child might not agree (see: meltdown central). Before you go, Google around and see if there are alternate activities in the area, or just a nice park where you could chill out for a bit...and maybe give the zoo or adventure park another go.

4. Bring beach gear your kid can handle
It isn't easy for Max to grasp the skinny handles of those little beach shovels; he does better with ones that have thick, long handles. I've made buckets more graspable by wrapping a washcloth around the handle.

5. Sneak a little therapy into your road trip
One good game I learned from a speech therapist: I Say, You Say. Make simple sounds like maaa, paaa, taaa, baaaa and daaaa and have your kid imitate them. You can start with one sound like "ma ma ma" and move on to other combos like "ma da" or "pa ba." You can also do some fine- and gross-motor-skill movements to accompany the sounds like clapping your hands or touching different body parts.

6. Have an emergency tote in the trunk 
Before Max was potty trained, we had a bag in the trunk filled with diapers, wipes and Bibsters (disposable paper bibs), along with a couple of changes of clothing.

7. Ask about a quiet space
If we're going to a theme park, I'll call ahead of time and ask about quiet areas. If we're visiting another family for a barbecue, I'll email the host and ask where a good quiet spot is to take Max in case he needs to regroup. It's good to know so you're not simultaneously dealing with a wailing kid on sensory overload and figuring out a place to whisk him away from the crowds, fast.

8. Two words: water gun
This trick was a winner on a long trip we took last summer. Turn off the air conditioning. Open the car's windows. Grab a loaded water gun you have cleverly brought with you (here's a six-pack of 'em). Turn around and start blasting the kids, who will inevitably crack up. Guaranteed, they will ask you to squirt some in their mouths, one cool way to help keep them hydrated. Replenish the gun with your water bottle. Enjoy your status as Coolest Mom Ever—at least for the next couple of hours.

Enter to win a $75 Toys "R" Us gift card  

I have one $75 Toys "R" Us gift card up for grabs. To enter, you must both:
• Fill in your information on the form below
• Leave a comment on this post sharing summer plans you're excited about.

Extra entries are available. 

This giveaway will be open until Tuesday, June 16, 2015 at 12:00 a.m. The winner will be announced here. Open to legal residents of the U.S. See "Terms and Conditions" for the full rules.

More chances to win a gift card!

Happening on June 9th at 1pm ET: a Babies "R" Us Twitter party. Hashtag: #BabysBigSummer. Join in to win one of nine $150 Babies "R" Us gift cards, or a $250 Babies "R" Us gift card.

a Rafflecopter giveaway This post is sponsored by P&G, from whom I received compensation and products, but all opinions and joyful experiences are my own. 

Offers at Babies "R" Us throughout June include $9.99 Pampers Splashers, $5 off Luvs Value Box of Diapers, $19.99 Pampers Value Boxes of Wipes and a free Dreft Stain Remover 22 oz. with purchase of Dreft laundry detergent 100 oz.

The Special Needs Blogger Weekend Link-up: Step right up

What to do if you're new here

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

Like this: On having a kid with special needs and having a life

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

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

Mommy abuse: Kids always hurt the one they love

For years, I haven't been sure just how much my kids truly care about me. I mean, yeah, they like to kiss, hug, cuddle and snuggle. They have been dependent on me to feed them, bathe them, read to them and supply them with tasty snacks and playthings. And sure, they regularly say "I love you!"

But still: There are times when I wonder if they are at all concerned about my well being. Particularly:

• When I am sick and lying in bed looking deathly pale/sniffling/moaning/all of the above, or just utterly and completely wiped out, and one of the kids walks into the room and asks me some random thing like, "Mommy, where are the pipe cleaners?" or "Can we go on a Disney Cruise next year?"
• When one of the kids accidentally hurts me—by, say, poking me in the eye, head-butting me, stomping on my foot or stomping on a kidney—and proceeds to nonchalantly carry on with whatever they're up to as tears spring to my eyes.

Lately, Sabrina enjoys doing cartwheels in the living room. As I am sitting there innocently reading a book or magazine I will remind her, "Watch out, honey, I'm here!" Inevitably, I will end up getting smacked in the arm (once, my forehead) by one of her legs. "Sorry, Mommy!" she'll say as I wince and grab my smarting body part, and then she will immediately return to her gymnastics.

Meanwhile, when Max wants my attention, he has this habit of mussing my hair (he's at the perfect height). Only inevitably his fingers get tangled in it because fine-motor skills are not his specialty and suddenly, it's like he's trying to yank my hair out strand by strand.

You always hurt the one you love, the saying goes and, wow, us moms get hurt a whole lot. It's not just the discomfort or, as the case may be, agonizing pain. It's that you seriously wonder about your kids, your usually sweet, nice kids who seem to be wholly devoid of empathy. Have they no concern for their poor, suffering mom, the one who worries over their every boo-boo, no matter how invisible it is? Don't they care that you have been mortally injured, or close to it? Couldn't they at least offer up one of their precious nine million Band-Aids? Might you be raising psychopaths? Have they no idea that if they knocked you out, nobody would be available to cut the crusts off their sandwiches?

The torture is unique to moms, because dads have thicker skins (literally); they're too engrossed in SportsCenter to notice that a child has just karate-kicked them; or they are happily joining in the rough-housing and about to break one of your vases.

Naturally, you don't want to make the kids feel badly, or say anything that might trigger years of therapy. And so, you bite your lip, hide your tears, repress the "Ouch!" and do your best not to screech "I THINK MY EYEBALL MAY FALL OUT OF MY HEAD!!!"

Or you joke around, even as you want to (gently) shake their little shoulders and say "Hello, I am a mother of the human variety and I am capable of feeling pain." Last year, when I was in the throes of a frozen shoulder and barely able to get my left arm into a shirt, one afternoon Sabrina asked if I'd do jumping jacks with her. In the perkiest voice possible I said, "I don't think I can, sweetie, or my arm might fall off!" (Fine, so that's just a couple of years of therapy.)

Why is there no protection plan for moms? Why isn't The American Federation of Mommies Union taking a stand on these dangerous workplace conditions? And come to think of it, where are my benefits?

Lately, though, I am getting payback. Oh, boy, am I getting payback. Because Max is regularly checking in to see if I am OK. And not just OK, mind you, but happy.

Max: "Are you so happy?"

Me: "Yes, I am so happy! Are you so happy?"

Me: "Yes, I am so happy!"

At first, I was delighted to know that he cared. He really and truly cared. Then he started asking me a lot. As in, approximately every 15 minutes. He asks when I wake up, as I stand in the shower, even when I'm doing something that isn't particularly joy-inducing. If I say, "Actually, mopping the kitchen floor doesn't make me that happy!" he looks concerned and so I'll correct myself and say, "Yes, Max, I am so happy!"

Last night, as I was sitting at the kitchen table doing work at around 10:00, the phone rang. Max woke up and sleepily shouted from upstairs, "Are you so happy?"

Well, I asked for it.

Image: Crying Girl (1963), Roy Lichtenstein

What we learned from our home fire safety inspection

Our home fire safety inspection was overdue: We've lived in our house for 12 years, and never had one done. But having a child who is obsessed with all things firefighter will propel you to get one, as will being ambassadors for Kidde. Also: June is National Safety Month.

Many fire stations do inspections for free, you just have to schedule an appointment (and be flexible, in case the fire inspector has to go actually put out a fire). Chief Joe is pals with Max, and he was more than happy to stop by our home. He brought Lieutenant Ed, Firefighters Shaun and Connor and—surprise!—Max's favorite truck, number 31. The only challenge was tearing Max away from our front porch, where he just wanted to gaze lovingly at the truck.

The inspection started in the unfinished part of our basement, where I had a feeling our clutter wouldn't pass muster. Sure enough, Chief Joe took one look at the plastic storage bins (aka combustibles) surrounding our furnace and said they had to be moved—there should be a three-foot empty radius around furnaces. Max promised to help clean up, although I am dubious.

Next, the Chief suggested that we move the carbon monoxide alarm in the furnace area to the playroom on the other side of our basement; he noted that furnaces can let out a little bit of carbon monoxide when they start up, which can give off false alarms. (Should have read the instructions!)

Chief Joe was glad to see we had a dedicated Kidde kitchen fire extinguisher, although it was in a cabinet and he suggested mounting it so it would truly be within reach in case of a fire. He glanced at our counter and noted it's best to keep wooden blocks of knives away from the stove, and switched ours with a metal canister.

Oopsie! No carbon monoxide (CO) alarm on the first floor. It's recommended to have one CO alarm on every level of your home. Oopsie on our second floor, too: We only had one in the master bedroom. The code, Chief Joe said, is to have a carbon monoxide alarm within 10 feet of all bedroom doorways. We'll be adding two Kidde Worry-Free 10-Year Sealed Lithium Battery Operated Carbon Monoxide Alarms with Digital Display—and we won't have to change a single battery for their lifespan. That said, we'll still need to regularly check them to make sure they're working properly.

In the attic, home to our guest room/place for random stuff/hoarding central, Chief Joe noted the various plugged-in items—the TV, the lamps, a clock—and recommended we unplug appliances rarely in use. 

Chief Joe and his crew also eyeballed all the old (and disconnected) electric wiring in the house. In the storage part of our attic, he noticed that a box had no cover, and advised us to get a cap for it.

In the end, Chief Joe said our house is overall safe. The key thing for fire safety, he noted, is smoke alarms. But even more key is working smoke alarms. He said his department often discovered smoke alarms without batteries in homes where fire had struck.

When smoke alarms let out chirps, sometimes people just disconnect them and neglect to replace the batteries. A scary stat from the National Fire Protection Association: Three out of five home fire deaths resulted from fires in properties without working smoke alarms. And one heartening stat: The risk of dying in reported home structure fires is cut in half with working smoke alarms.

Our home fire inspection was a real eye opener for me. As for Max, well, I'm not sure anyone has ever enjoyed a fire inspection as much as he did.

More from my fire safety series:

Protecting your family from a home fire: 9 things you probably never knew

For more information, check out: 

Kidde on Facebook
@KiddeSafety on Twitter
@kiddefiresafety on Instagram

This post is one in a series sponsored by Kidde, for whom I am a compensated ambassador. 

Those everyday champions in your child's life

I found out yesterday that a neighbor of ours had passed away. He was elderly and not in good health, so it wasn't entirely unexpected, but of course still sad. He was a sweet guy who had always been so warm to both me and Max.

In general, his family kept to themselves; I haven't much spoken with his wife over the years. But from early on in Max's life, Mr. W. was supportive. His last child has Down syndrome and so, to some extent, he got it. Whenever he saw me, he'd asked how Max was doing. When he was sitting on his front porch and he'd see little Max zooming by in his gait trainer, he'd shout "Go, Max! You're doing great!" When Max informed him that he was going to be a fireman when he grew up, he responded, "Young man, you'd be a wonderful firefighter!" In recent years, Mr. W. readily noted to Dave and me how well Max was doing. He knew just how far he'd come.

At times, Mr. W. was also my cheerleader. When we'd get to talking over our hedges, and I'd mention concerns about Max's development, he'd encouragingly tell me that he had plenty of potential and many years to develop ahead of him. We compared notes on local programs for kids and adults with disabilities.

Between our family, friends, Max's school team and his docs, he has plenty of champions in his life—but it was wonderful to have a cheerleader next door. I always welcomed Mr W.'s words of wisdom, and his mere presence. As I've said here before, I've found it comforting to not be the only family in our area with a child who has significant special needs. Mr. W. helped me feel less alone.

Max saw me looking sad last night and asked why. I said I was sad that Mr. W. had died. Max offered a suggestion: He could come back. I explained that when you die, you do not come back. Max pondered that, then pointed to himself. "Max, everyone dies but you are only 12 and you have lots of years to live," I reassured him. "We were lucky that Mr. W. was our neighbor for a long time. He was a nice guy." Max nodded in agreement. 

I last had a conversation with Mr. W. in April, when he called to ask about our neighborhood recycling schedule. This was before I announced my pregnancy. But I knew that he was ailing, and I told him our secret. "Congratulations!" he said. "It'll be good for Max to be a big brother."

I read Mr. W.'s obituary online. The family requested that in lieu of flowers, donations be made to Special Olympics or The Arc. I'm so glad to do that in his honor.

When someone passes, you inevitably regret the things left unsaid and undone. I wish I'd told Mr. W. just how much I appreciated the pep talks. But then, maybe he knew.

R.I.P., Mr. W. 

On having a kid with special needs and having a life

Sunday, Max and Dave roamed around New York City, once again. If you're there and happen to see a big, cuddly guy and a kid in a red Fire Chief hat wandering the streets, please point them to the nearest fire station and/or good sushi restaurant.

Their joy trip is the reason we haven't yet fully bumped up Max's anti-seizure meds. When I was talking with his neurologist last week, and I told him just how sleepy Max had gotten after the first round of an increased dosage, he realized we needed to space things out. So we've only been giving him more Trileptal in the evening, at bedtime, and not yet for his morning dose.

"You could try this weekend, depending on his activities," the doctor said. I explained that Max had a bowling birthday party he was looking forward to on Saturday morning, and Sunday was an outing with Dave but that we could cancel Sunday if we had to.

"No, that's OK!" the doc said. "He needs to live his life."

So we'll finish raising his dosage try next weekend.  The doctor said he felt confident that now that Max has more mediation in his system, he'll be OK without us completely getting it to the ultimate amount he'll be on.

That whole living-life thing has been on my mind this last week. The main cause of his seizure is that his medication needed to be upped, although he is more at risk for them when is is tired. Max had been up late several nights in a row, having fun. Dave and I are both aware that fatigue can make him more likely to have seizures, even though it's been seven years since he last had one and this boy has had his share of late nights. The night the seizure happened, we had been bowling and then we went out for ice-cream. 

We do our best to be responsible parents, staying on top of Max's doctor appointments, therapy needs and, well, all of his needs. But sometimes, we are like any other family, enjoying ourselves and living in the moment. I just can't beat myself up over that, as much as twinges of guilt still seep in. Especially when there is this: