Wednesday, March 20, 2019

What this photo says about a boy and his passions


When Max has a passion for something, it is all consuming. Which he explains why he was standing on our block the other day photographing the license plate of some random car.

Max is in love with California. Since a visit a couple of months ago, he has decided he will someday move there. This is not to be confused with his passion for the state of Florida, which is sooooo three months ago. He has since moved on to a bigger and, in his opinion, better state. What both states have in common is that they are warm, and Max really loves warmth. It might be because, as an adult with cerebral palsy once pointed out, that his muscles feel more relaxed in the warmth. But it could just be that this boy likes warmth. And vacation vibes.

Max had been sitting on our porch when he opened the front door, poked his head in and shouted "California!" I realized a car parked nearby had a California license plate. Max was very excited. When we're driving around and he starts squealing, I know why it, as recently happened in a parking lot. Then Max said something else and I wasn't sure what he was saying until he came in and showed me on my phone. A picture. He wanted to take a picture of the car.

I was all, "No, you go take a photo of the car." Not because I was embarrassed—I mean, does any woman ever have any sense of mortification ever again after childbirth?!—but because I wanted him to do it. He said he couldn't.

"Yes, you can," I said, and I reminded him that he had to hold his iPad with one hand and press the white button with his right finger. Off he went. I watched him struggle to do it and I shouted directions from the porch. He ended up taking a whole bunch of photos of that beautiful license plate.

I don't know if Max gets so passionate—some might say obsessed—because of his intellectual disability or not. It doesn't matter, it's the way his mind works. Every one of our brains operates in its own unique way. The fascinations have come and gone over the years: the color purple, spaghetti, Lightning McQueen, car washes, the color red, fire trucks. We indulge him—because if it brings him joy, great. I appreciate that his passions have expanded over the years, as his sensory issues have ebbed, although they're not as cheap as they used to be. He loves to try new sushi places. He adores traveling. Oh, and he is quite fond of BMW convertibles.

A couple of hours later, Max's music therapist showed up and they hung out in the kitchen as I listened in from the living room. Max had suggested the song: California Luv by 2Pac. And then came Katy Perry's California Gurls.

"California girls, we're unforgettable, Daisy dukes, bikinis on top!" he sang, enthusiastically. And I smiled.

Tuesday, March 19, 2019

Ikea creates stuff for disabled people you can make on 3D printers


Getting up from a couch can be challenging for someone with physical disabilities, unless there are sofa-elevating legs. Now, they exist in Ikealand—along with a dozen other new adaptive items. The designs, available for free, can be made on 3D printers.

It's about time furniture for people with disabilities started going mass. Clothing has, with the launch of Tommy Hilfiger's line of adaptive clothing, Tommy Adaptive. Sneakers have, with Nike's FlyEase sneaker. The Xbox has, with its adaptive controller. There's still a lot more progress to be made, of course, but Ikea doing adaptive merchandise is major.

The idea began with Eldar Yusupov, who works on the creative team at the Israeli branch of an ad agency that designs Ikea products. Yusupov, 32, has cerebral palsy and wanted furniture in his home that worked for him, not against him. Ikea teamed up with Access Israel and Milbat, an Israeli nonprofit that produces devices for people with disabilities. They called the project ThisAbles, and created 13 add-ons that make Ikea accessories and furniture accessible to people with disabilities.


The creations include:

 Handles that enable a cabinet door to be opened with a forearm or entire hand

An oversized ring to pull zippers

A rigid-handled curtain gripper

A bumper to protect glass doors in case of wheelchair collision

A finger brush with a loop that holds drawing and painting tools

A walking stick holder that fits alongside a bed

An oversized button that allows a lamp to be turned on and off by pressing it

Extra-large drawer pulls

Markers that define boundaries on shelves for people with visual impairment 

A mirror that can be fastened to the inside of a top shelf so the interior can be viewed by someone in a wheelchair

A cup holder that attaches to the side of a bed

A scannable sticker that can read the contents of a box

The items are on view only at showrooms in Israel. Meanwhile, the files for 3D printing can be downloaded for free at ThisAbles. While the models were made for IKEA products, customers can request tweaks if the products don't work for their furniture (here's the form for that). People can also submit ideas for other adaptive devices here. The ThisAbles project also created a list of 113 existing Ikea products that are accessible, it's here.

If like most people you don't own a 3D printer, check in with libraries in your area. UPS has several dozen locations nationwide with 3D printers. Or consider joining a Makerspace community, many of which have 3D printers. Makexyz connects customers with people who will do 3D printing for you (you just upload your model to get a price). Websites including Ponoko and Shapewaysdo 3D printing, too.

Here's hoping the company can make this happen around the world, or at least put the products on their sites for all to buy. Meanwhile, I heart Ikea more than ever.

Top photo: ThisAbles video, YouTube; photos of products: ThisAbles

Monday, March 18, 2019

Dr. Phil dismisses interabled couples and social media shows him


So-called expert Dr. Phil stirred up a storm last week when he featured an interabled couple who were having relationship issues. First he questioned the woman: "You're a young, single, attractive female. Out of all the people that you can choose, why choose someone in a wheelchair?" Later he noted that a woman dating a man with disabilities "can be his lover or you can be his caregiver but you can't be both" and "It won't work, 100 out of 100 times this won't work." I've searched all over the Internet, and can't seem to find a single source for that statistic. That's likely because he made it up.

Social media exploded. Interabled couple Shane Burcaw and Hannah Aylward, who'd been approached by Dr Phil to be on the episode, took to YouTube to explain why they turned him down. They created the hashtag #100outof100 for couples in interabled relationships, and people have posted on Instagram and Twitter from around the world.






Dr. Phil's rejection of an entire segment of romantic relationships—during Cerebral Palsy Awareness Month, no less—is ableist, prejudiced and so narrow-minded. He insinuated that people with disabilities are burdens who suffocate a relationship. He didn't seem to understand that you can have physical challenges and still have a whole lot to contribute to a partnership. He couldn't seem to grasp that you can be disabled and be someone's soulmate. He couldn't fathom that in the end, it's all about l-o-v-e.

The awful message Dr. Phil implicitly sent to the masses: You don't want to get into a relationship with a person with disabilities because it won't work out. Lemme just say, Dr. Phil, I am mom to one really cute teen boy with intellectual and physical disabilities. He has more empathy, warmth and emotional intelligence than many people I know. He would definitely require care from a partner. And he would make someone really, really happy. So don't you go turning the ladies away from him. And not for nothing, Dr. Phil, someday you might need caregiving. Does that would mean your own relationship would inevitably disintegrate?

One hundred times out of hundred, there is love. And challenges. And hardships. And love. As in any relationship.

I'll leave you with these words from @candyneshama on Insta:

I never fit in anywhere. All my life, I stumbled from thing to thing, trying to figure out who I was, and then I found @maximus_staintacus and we fell in love. I have been his primary caregiver for our whole relationship and I wouldn't have it any other way. I feed him, I get him dressed, I bathe him, I take him to the toilet, I scratch him every time he itches, and I help him transfer from his wheelchair to go all around the house. And of course it's a lot. Keeping Max healthy and alive takes up a large portion of my time & energy. But i wouldn't change a thing, and he does so much for me too. I care for him physically, but he keeps track of my emotional wellbeing, makes sure I'm safe, holds me when I'm scared, nourishes my self esteem, and assures me every day that I am a strong and capable and talented woman.

Friday, March 15, 2019

The Disability Blogger Weekend Link-up: post it!


What to do if you're new  

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: Is it wrong to force your child to have fun?

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.

Thursday, March 14, 2019

When your child isn't glad to see you, and it's awesome


The other night, I showed up at Max's school to drive him home. One evening a week, a group of high school students come over to do activities. Everyone was in the cafeteria playing bingo. I spotted Max and walked over to his table, where he was seated with friends.

"Hey, Max!" I said.

He glanced up from his bingo card, looked at me, shook his head, then returned to playing the game. All I could think was, "Typical!" Max would rather not have his mom hanging around. I can appreciate that. I take solace in the fact that, unlike some teens I know, I do not embarrass him with things I do like laugh or wear leggings or exist.

I am thrilled about the continued emotional development, even as Max clings to more juvenile habits. When we'd walked in that night, he'd asked me to write "Fireman" on his name tag and I was about to until a teacher raised an eyebrow and had a talk with him. (I am of two minds about this because I think it's NBD but at the same time, maybe Max does need encouragement to seem more mature.)

Max actually relishes distancing himself from me. When we went to see a high-school production of Annie the other weekend, they ran out of seats. A family scooted over so one was available at the end of a row for Max. I was going to hover in the back until Max pointed at me and said, "Go!" An elderly woman nearby seemed a bit startled, but I knew Max would be fine and I left the auditorium, hung outside on a bench and read a book. 

En route home from school, Max and I had a good chat. He didn't think that teacher was very nice for not letting him write his name, he said. He pointed out that it was going to be very cold the next day. He said something to me that I couldn't understand, until I figured out he was saying "cold water." Then I spent another few minutes trying to understand that he was telling me our babysitter is funny. And finally, I realized what he was saying: When our sitter had given him a shower, she'd told him he could take one in cold water and pretend he was in California (his fantasy place to move to).

I love our conversations. As with many teens, they're often game to have conversation in the car. I mean, the fact that I have reached a point where Max and I can talk continuously for a good 20 minutes is not something I take for granted. His communication skills

I told Max we were headed home. He disagreed because, wait for it, California is his new home. "It's disgusting here!" he noted, several times. (For the record, we have a perfectly nice home in a perfectly good state, but whatever. Just when we got close, he asked to make a quick detour. And so we cruised by our local fire station, just me and my evolving teen. Aren't they all? 

Wednesday, March 13, 2019

File under: the mom bullying has got to stop


My friend Julie posted a rant on Facebook the other day, and rightfully so. She'd been grocery shopping and came upon a woman with a little boy who was screaming at the top of his lungs. The mom kept talking to her son in a quiet, calm voice but he grew increasingly agitated. He threw his sippy cup down and shouted, "You are the stupidest mommy in the whole wide world." Julie wanted to approach her, because Julie is lovely and caring that way, but backed off when she saw an older woman approach and continued shopping. Soon, the shouting stopped.

"I caught her eye and flashed her a thumbs-up," Julie wrote. "'Good job, mama,' I said with a smile...but I saw tears start streaming down her cheeks. As I grabbed her in a hug, she quietly sobbed, 'That woman just said my son was spoiled!' I said, 'Don't listen! You are doing a good job. My son was the exact same way and he's totally fine and chill now. You're doing great!' Why did that woman feel the need to approach and tell her that her son was spoiled, even if she thought so? Why can't people comfort rather than criticize, help rather than hurt, open their arms rather than point fingers? Moms have it hard enough without being judged by strangers every minute."

I cheered Julie on from my couch as my heart went out to the mom she'd encountered. I have been that mom weathering a child's meltdown, as have many, many other moms of children with sensory issues (and many moms, period). I have dealt with angry glances, tsk-tsking and comments I've overheard such as, "Why can't she learn to control her child?" Who knows: Perhaps the child in that grocery store had sensory issues or other challenges. Even if he didn't, there was no excuse for the other woman's behavior.

To me, strangers who publicly rebuke moms for their children's behavior isn't just shaming—it's harassment, tyranny and torment. It's mom bullying.

It is very hard, in the moment, to respond to these bullies. You're already on your last nerve. You're concerned about your child. You're feeling vulnerable. And then someone pounces and it is all you can do to not throw yourself down on the floor and wail, too. Mostly, I've ignored the stares and glares. At times, I have returned the evil eye. Once, I blurted "I'm doing the best I can" which clammed the pissy man in the seating area of the airport right up.

Nobody knows the reason behind a child's meltdown except the parent (and even then, sometimes it's a total mystery).

Nobody has the right to make assumptions about a child.

Nobody has the right to make assumptions about a mom or dad's parenting.

Mom bullies of the world: Back. Off.

Image: Flickr/davide

Tuesday, March 12, 2019

Is it wrong to force your child to have fun?


AAAAAAAAAAARGH! That was the sound of Max standing at the base of a tubing hill and screeching this weekend. Perhaps you heard him?

Max had been totally gung-ho about going. Miraculously, all of us managed to make it out of the house at a reasonable hour in the morning and grab breakfast and not even fight in the car (well, not too much) before we got to Camelback Mountain in Pennsylvania. I'd heard great things about the tubing—they have double tubes, so Dave or I could slide down with Max. Plus they had a conveyor belt to haul you and your tube up the mountain, so no shlepping necessary.

For some reason, the double tubes weren't in use on the day we went, but we could put together two singles; Dave would hold Max's rope, and Sabrina or I would hold Ben's. We got tickets and headed over. Just as we made it to the front of the conveyor belt line, Max got upset. Then the screeching began.

Dave and I weathered a lot of meltdowns when Max was younger, so we weren't that flustered or bothered by the stares. Dave held onto Max's arm and kept saying, "Come on, Max, let's just try it once." We looked at each other, and we knew: If Max could just get up to the top of the mountain and try tubing, he'd like it. This as '80s music blared in the background: "COME DANCING, ALL HER BOYFRIENDS USE TO COME AND CALL, WHY NOT COME DANCING, IT'S ONLY NATURAL!"

Like any teen, Max deserves to have his voice heard and his wants and needs respected. But Dave and I know that if we can help him get past that hump of fear, he inevitably does OK. And so, we coax, wheedle, nudge and tug. Preparing him doesn't usually help; I'd shown Max videos of people tubing and photos of the resort. He'd seemed into it.

I have in mind an article in The Washington Post a year ago that raised controversy, an excerpt from writer Whitney Ellenby's book Autism Uncensored about forcing her son with autism to sit through a performance of Sesame Street Live. It took more than a half hour, and involved squeezing him between her legs to control him. Autistic adults were horrified: Although Zach eventually did sit and watch the show, some felt this mother had traumatized him and used unnecessary force. When Ellenby spoke with Zach's doctor after the episode, though, he felt that she had broken the pattern of negative reinforcement.

I am not questioning the wisdom of autistic adults. There are no easy answers here, though I believe that the majority of parents operate with the best of intentions. Over the years, Dave and I have been that mom and dad cajoling Max into shows, events, restaurants, family gatherings, whatever and wherever. (Good noise-blocking headphones really helped.)  I do not condone the use of force—but would Dave tugging Max toward that conveyor belt count as force, in some people's eyes? Perhaps. Yes, we have literally pushed Max into doing stuff and hugged him tight to help him feel comforted, because we know his m.o.: resist, give in, enjoy.

That's exactly what happened that morning. Dave kept talking quietly to Max, squeezing his shoulders and leading him toward the conveyor belt. "Max, it's not scary, you'll really like it!" Dave said. And suddenly, there was Max on that conveyor belt, calm. Sabrina, Ben and I were a few people behind him and Dave. Max When they got to the top of the hill, Max seemed fine.

There are plenty of clear-cut rights and wrongs with parenting. And then there are those gray areas where you're just going on instinct and experience, trying your hardest and hoping for the best. It's true of any parents, of course, yet when you're dealing with a child having a sensory meltdown, things feel even more acute. There is definitely a point of no return; Dave and I have taken turns hanging outside restaurants and shows with Max over the years. As Max is maturing, though, I think there is a growing awareness that he's been through stuff like this before and he'll be OK. I'm betting that's what partially enabled him to calm down relatively fast.

When Dave helped Max settle into the tube, he looked a little dubious but then they were off and sliding and Max laughed and laughed. When Sabrina, Ben and I got to the bottom of the hill, Max grinned one of his big grins and headed back to the conveyor belt.

We all went up and down about 10 times.

Max wants to go back next Friday.

Monday, March 11, 2019

Props to this restaurant's response to intolerance of people with disabilities


Pizza Inn in Greenville, South Carolina is known for its excellent pies, including the pizzert (cinnamon-and-sugar frosted pizza). Online reviewers give it props for the "attentive," "nice" and "friendly" staff. Many people also appreciate the restaurant's inclusiveness: 10 out of the crew of 16 have disabilities. Many customers also appreciate this sign that hangs on the restaurant's front door:

We are proud to be an equal opportunity employer and hire ALL of God's children!

Owner Amanda Cartagine put it up following a customer complaint. The person had asked a staffer with autism to refill the lettuce bowl at the salad bar, and he was not satisfied with the service. A manager filled him in, explaining that this staffer hadn't been trained to refill the lettuce bowl. And the man had the gall to suggest to the manager that Pizza Inn put up a sign cautioning people about the staffers with disabilities. So Amanda took him up on his signage suggestion. 


"These are like my kids—and it made me angry, but I wanted to do something that was not rude but that got my point across," Amanda told WYFF.

You have to be a pretty sad person to be intolerant of employees with disabilities. Here's to people like Amanda who serve up humanity, equality and respect.

Sign image: Screen grab/WYFF video; Image: Facebook

Friday, March 8, 2019

The Disability Blogger Weekend Link-up has returned


What to do if you're new  

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: Luke Perry didn't survive his stroke. Our baby got lucky.

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.

Thursday, March 7, 2019

A trainer with autism opens a gym for people with autism


As the mom of a child with disabilities, I am grateful for the insights and advice I get from adults with disabilities. They get it. Which is exactly why Mark Fleming—a trainer who has autism—recently opened Puzzle Piece Fitness in Tampa, Florida. And it's why people like Rachel Barcellona, a young woman with epilepsy and autism who wants to get in shape for the upcoming Miss Florida competition, has been training with him.

Rachel trains with Mark

Mark, 30, has a bachelors in exercise science and a masters degree in human performance from the University of Alabama. "Growing up, my 'special interest' was sports," he told the website Family-Friendly Tampa Bay. "I constantly hear how I was able to read the box scores in the paper before I could even read. However I also had numerous fine- and motor-skill deficits that should of prveented me from playing the sports I loved so much, but thankfully had parents that not only allowed me to play but pushed me to play." Fleming ran an in-home training business before he decided to get a location.

Mark Fleming

On his website, Mark notes a number of potential benefits of exercise for people with autism, including helping with communication, sleep and sensory issues; reducing stress and time spent in "self-stimulatory activites"; and offsetting depression. Outside of school phys ed, he's noted, many individuals with autism have few opportunities to stay active and healthy.

Check out this video of Mark in action:


Gyms for people with autism are relatively rare, let alone ones run by people with autism or other disabilities. The few I've read about include ASD Fitness Center in Orange, Connecticut, opened by two parents of a child with autism; there is no bright lighting or music, and mufflers under the floor tone down echoes. Puzzle Piece Athletics in Dublin, California specializes in Crossfit training for kids with autism. One mom started a national chain of gyms for kids with autism, We Rock The Spectrum. Around the country, there seem to be a small number of gyms and programs that cater to people with other disabilities and injuries.

Still, there's a bigger issue at hand here: More gyms in general need to be inclusive and offer adaptive equipment to people with disabilities. One small study conducted several years ago in Mississippi found that while 10 gyms in and around Hattiesburg had elevators, and most had accessible parking and ramps, only 20 percent had adaptive equipment and none had staff trained to help people in wheelchairs work out. It likely reflected the general state of accommodations at gyms around the country, and I'm guessing not all that much has changed.

For people with autism, a smaller, quieter gym with personal attention can be just what they need, and Mark is standing by. "How [people with disabilities] live isn't as great because...they're just sitting at home and not doing anything," Mark told Channel 10 News. "This hopefully can help them improve their life that way and maybe even help them get a job, become more social, just all the aspects that just getting active can help with."

Photos of gym: Screengrabs, 10 News video/Photo of Mark: puzzlefit.com

Wednesday, March 6, 2019

You don't have to love someone with disabilities to care about this outrage


Imagine if someone referred to your child, your mother or father, or your sister or your brother as a loser. Or called them stupid or pathetic. You'd get upset, right?  That's exactly how Amanda Lukoff felt growing up. Her sister Gabrielle has Down syndrome. Amanda was horrified by the rampant use of the r-word, which demeans people with intellectual disability. And so Amanda, a filmmaker, decided to do something about it. The result is her powerful new documentary, The R-Word.

The R-Word - Trailer from Thorough Productions on Vimeo.

You don't have to love someone with intellectual disabilities to care, though. If you care about decency and humanity, period, this is your issue, too. 

Special Olympics just launched a new campaign: Spread the Word: Inclusion. It's the natural followup to their "End The Word" campaign, created to raise awareness about how we talk about people with intellectual disability (ID) and give them the respect they deserve. Among other initiatives, there's a pledge to be inclusive—by welcoming someone who has been left out, sitting next to someone alone at lunch, or saying hello to someone in the hallway.

Inclusion, of course, starts with treating people with disability with equality. As Amanda's film illustrates, the r-word makes people with intellectual disability seem like lesser human beings. I've long spoken out about it. It pains me to hear a word that stigmatizes my son and others with ID used carelessly in conversation. Max has enough obstacles to overcome in this world.

Amanda's hour-long film explores the history of the word, its pervasiveness in movies and everyday life and its implications. The story is told through four sibling stories—including Jason Newbury and his sister Jenni Newbury Ross, who founded the Pals Program, and the Long brothers, who've entered triathlons together—and first-person accounts from self-advocates like Lauren Potter and John Franklin Stephens. "I liked that the film told people not to use the r-word because it upsets other people," says Gabrielle. "It was great being in the film because I'm famous and people I know can see me in it."

Viewers also see people who treat their brothers and sisters like any brothers and sisters, doing their best to include them and make the world more welcoming to them. "I just want to be treated like everyone else," says Gabrielle in the film. But a word that warps perceptions about people with disabilities is a tremendous obstacle to equality.

You don't have to love someone with intellectual disabilities to care. You should care because an entire segment of our population is being marginalized by a slur. 

It is not OK to use racial slurs—basically everyone knows that. So why do some people consider it OK to use a word, no matter how jokingly, that's crude and offensive? What's the big deal about using a different word? As Tim Shriver, chairman of the Special Olympics, puts it in the film, "Changing the language is not enough to change a culture, it's not enough to change laws or change behavior, but it's an important dimension of changing all those things, and it's the one that everyone can do."

I was especially taken with the story of the Marcellinos, the family behind Rosa's Law (named after their daughter with Down syndrome, who was 9 years old at the time). It removed the terms "mental retardation" and "mentally retarded" from federal health, labor and education policy and replaced them with "intellectual disability." Rosa's brother Nick delivered testimony when the bill was introduced in the Maryland General Assembly; his speech was co-written by his family.

Some people say they are just words, and it is not going to make a difference if we change the words. Some say we shouldn't worry about the words, just the way we treat people. But when you think about it, what you call people is how you treat people. If we change the words, maybe it'll be a start of a new attitude toward people with intellectual disabilities. And they deserve it.

But you don't have to love someone with intellectual disabilities to care. 

"I believe that everyone should care about the pervasive use of the r-word because of one word—respect," says Amanda Lukoff. "If I don't need to have a sibling who identifies as LGBTQ to know that people in that community deserve to be treated with respect, then others shouldn't have to have a sibling with intellectual disability to understand the r-word is problematic. People of all abilities deserve respect."

The R-Word film will be shown at the ReelAbilities Film Festival in New York City on Monday, April 8; self-advocates Loretta Claiborne, David Egan and John Frank Stephens will be in attendance. If you'd like to have a screening of The R-Word at your school, college campus, company, nonprofit organization or community group, fill out this form

Tuesday, March 5, 2019

Luke Perry didn't survive his stroke. Our baby got lucky.


I felt sad yesterday when I read that Luke Perry died of a stroke. Like a kajillion girls, I'd had a crush on him in his Beverly Hills, 90210 days. He was young, just 52 years old. His passing was a sobering reminder of how dangerous strokes can be, and the tragedy Max escaped.

Luke had been rushed to the hospital last Wednesday. Reports say he was responsive when EMTs arrived. Doctors sedated him, hoping to give his brain a chance to recover from the trauma, but the damage was too great.

Until we had Max, Dave and I had thought that only adults had strokes. That changed the day we sat down in an NICU conference room with a team of doctors after Max was born. Max had stopped breathing a couple of times, and then doctors realized he was having seizures. 

"Your baby has had a stroke," the pediatric neurologist told us. It was a large stroke that had affected both sides of Max's brain, the left side more significantly. The doctor was grim: Max might not walk or talk, and he could have severe cognitive issues. His hearing and sight might be affected, too, we learned. The next day, a kind resident talked with Dave and me about the ability of the brain to heal and reorganize itself—its plasticity. He showed us the MRI film and we could see the white spots, where the brain damage was. 

We certainly didn't feel lucky, but we were. The stroke had spared Max's brain stem, responsible for basic functions like breathing and swallowing. It had spared his life. Eventually we'd come to learn that, if this had to happen, we were also lucky that Max's stroke had been detected right from the start. Sometimes, parents only realize that their babies have had strokes when they have delays.
We got Max going on physical therapy as soon as he was home from the hospital. Occupational and speech therapy would follow, along with alternative treatments like hyperbaric oxygen therapy and, when he was six, stem cell therapy. We used the stem cells we'd banked at Max's birth, before we knew what had happened to him.

As lonely as I felt at the time—this was 16 years ago, before blogs and social media—pediatric stroke is not uncommon. It occurs in about 1 in 4000 live births, reports the National Stroke Association, with the greatest risk right before and after birth and during the first year of life. Causes include heart defects, blood clots and pregnancy issues like premature rupture of the membrane or pregnancy-related high blood pressure. Sometimes, doctors are not sure what went wrong, which was the case with Max.  

It was hard not to blame myself. Was it that time I spray-painted the medicine chest? I kept wondering, and maybe always will. Whenever I heard of an adult who'd had a stroke, whether someone I knew or someone famous, I would struggle to wrap my head around the fact that our baby had a stroke. When I'd read about adults struggling to regain skills like walking or talking, I'd despair about having a little guy who was struggling to learn to walk and talk and who had difficulties holding things in his stiff hands and even chewing as a result of a stroke. How did this happen? Why? What did the future hold for our beautiful boy?

Max has shown us the potential of the brain to heal. His speech isn't so clear but he has speech. His hands don't always move the way he'd like them to because his brain doesn't send the right signals, like a GPS on the blink, but he gets things done. He walks really well. He has cerebral palsy, but it does not have him. This boy has defied expectations. These are things I note when I'm talking with someone whose relative had a stroke, offering them hope that we were not given on that fateful day in the NICU.

Stroke can happen at any age—babies, children, teens, adults of all ages. I do my best to spread the word about the signs of pediatric stroke (which can be confirmed with ultrasounds and MRI):

• Seizures are the most common sign—parents may notice rhythmic twitching of the face, arm or leg, or pauses in breathing and staring.
• Delays in early milestones like rolling, sitting, pulling to stand, crawling and walking.
• A child who favors one hand over the other before 18 months old, with the other hand clenched, or who doesn't bring both hands together during play.
• A child who is unwilling to bear weight on one leg, points the toes on that foot or walks on tip-toe.

Luke Perry's stroke was so massive, he couldn't survive it. R.I.P., Dylan—you're forever in our hearts. And Max, well, I will forever know how darn lucky we are.

Monday, March 4, 2019

When your child has the glee gene


Max and I have just pulled into a parking spot when he starts squealing happily and pointing to something out the window. I'm not sure what he's seeing. We've arrived at a local high school to see a production of Annie and he's already in a pretty good mood, but something is bringing out the bliss.

He says something, a word I don't understand. He keeps pointing. And then, I realize. The word is "California" and what he's pointing to is this:


Max has spotted a license plate from the state where he'd like to move. He sits in the car giggling and I start laughing, too. We had a similar moment the other day when we were driving and the song It Never Rains in California came on the radio. Again, he was ecstatic.  

Max just doesn't like stuff. He loooooooves stuff. His passions run deep—for firefighters, fire trucks, the number 31 (his favorite fire truck number), the color red, mac 'n cheese, his favorite local restaurant, school (yep, he loooves school), camp, convertibles, Home Depot and, yes, California. On the downside, he can talk about the stuff he adores nonstop, so much so that he tends to remind us every 15 minutes that he is going to be moving to California. But on the literal upside, his ebullience is contagious.

All my children are happy. They bring me unique joy, same as any parent. Last night, I watched Sabrina and Ben do a dance and my heart got an infusion of happiness. Max just happens to have the gift of extra-expressive joy. Everyone around him knows when he is excited about something, because he does not hold back. 

Some might consider such unfettered exuberance in a teen child-like. But how much happier would we all be if we could regularly appreciate the small things? Max is lucky to have the glee gene.

On occasion, people buy into the cliché. "Is he happy all the time?" they'll ask. Well, no. Max is human. He has the full gamut of emotions, including teen 'tude. Sometimes, his bursts of happiness help break the ice when people feel uncomfortable about his disabilities. The extreme joy will continue serve him well. Max lives in a world which still hasn't caught on that children and teens with disabilities are people first. He needs every edge he can get. 

Friday, March 1, 2019

Join The Disability Blogger Weekend Link-up


What to do if you're new  

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Like this: Having children with a big age gap and the stuff nobody tells you

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

Thursday, February 28, 2019

The flashbacks still take me by surprise


Doing the dishes the other night, I stared at the vase of pink alstroemeria on our kitchen table. I buy the flowers occasionally from Trader Joe's; they're just $3.99 a bunch and they last close to two weeks. I wondered about the sunny vase—I couldn't recall where it had come from. The stripes reminded me of another smaller vase, a blue striped one. Where had that one gone?

WHAM. 

Dave and I have just parked the car outside our front door. It is our first time home from the hospital since we had Max. He is in the NICU, unconscious and hooked up to tubes. We are still in shock and devastated. What's happened to Max is a nightmare come true, and it feels even more painfully real now because we have arrived home without our newborn. We don't know exactly what the future holds for Max, but the NICU doctors have told us the worst. It is hard for us to believe that the perfectly pink, pudgy baby in the incubator has extensive brain damage. 

I walk up to the front porch. There is a pan with aluminum foil on it—a neighbor has left a lasagna. There are a couple of packages, too, and a pretty little blue striped vase with flowers from a colleague at work. Everything sitting out there looks sad to me on that gray December day, yet more evidence of what Dave and I have been through.  

I walk into the house. The silence is oppressive. Then I walk upstairs to Max's room, painted Kelly green because we didn't know whether we were having a boy or girl. The color I chose because I thought it looked so happy and cheerful. I pull the door shut, fast. I know that I will not be able to bear to keep walking by and seeing the empty room. 

And that's all that I remember of that day. The flashback ebbs away, along with the hurt, and once again I am focused on the dishes and considering whether I'm going to catch up on The Walking Dead when I'm done or finish the book I'm reading, A Man Called Ové.

The sad memories don't materialize very often. When they do, though, I feel them to my core, as sharp in my mind as if they had happened the other week. And I am surprised that they keep coming, sixteen years later. They are such a disconnect from the life Dave and I enjoy with our three children, and how lucky we feel to have them all.

Wednesday, February 27, 2019

File under: children's books with really bad messages


A children's book with a message about self-acceptance: What could be bad? You have to read it to believe it. Too bad Ben and I did last night.

Ben adores a book called Put Me In The Zoo. It's from the Beginner Book series cofounded by Ted Geisel, aka Dr. Seuss. The book is about a leopard named Spot who's determined to get into the zoo and shows two kids all the tricks he can do with his spots. Turns out he's better for the circus. And he didn't even have to use LinkedIn! Spot and friends return in a sequel called I Want to Be Somebody New! in which Spot decides he's had enough of the circus life and decides to experiment with new identities. It sounded cool, and I got it for Ben without a second thought.

At bedtime last night, we settled into the rocking chair in his room to read it. In his quest for a new him, Spot transforms himself into an elephant. This is not OK with either of the two children, who are dressed in outfits seemingly designed by Dick and Jane. "Being that big cannot be fun!" they note. They point out stuff Elephant Spot can't do—walk on a fence, squeeze between circus tents and, heck, get into the door of his house. And then these children, who have turned quite obnoxious since the original book, rant on: 

You cannot sit
in your old chair.
Your new rear end
won't fit in there.
You're very big.
You've very fat.
We do not care
for you like that.

WHAT?!

Oh, but Elephant Spot cheerfully accepts all this: "Every word of what you say is true." So he tries again, morphing into a giraffe. The kids aren't having any of it:

Being that tall can't be any fun.
You're taller now than everyone!
Your head is now so high in the air,
It's hard to see your face up there.

HUH?! Is this book actually a Dr. Seuss parody? I check the front pages. Nope, it's real and written in 1986, not 1956. And it's by the same guy who wrote the original book, although there is the possibility that Donald Trump ghostwrote it. I'm tempted to just close it, but instead make up words as I read to Ben. Spot's identity crisis continues and this time, he turns into a mouse. Now he's "much too small" and (nah-nah-nah-boo-boo) he can't even open up his front door! And people put traps inside their homes to catch mice, the children inform him. !!!

I am half-expecting Spot to turn into an amputee dog at which point Jane Judgmental and Dick Dick proclaim:

Being a dog with three legs
Makes you hobble when you pace
Why, you couldn't even enter
A four-legged race!

The book ends (trust me, not a spoiler alert) on a relatively more positive note as those darling children ask Spot to be the old friend they liked. "Show us what we want to see!" they beg. And Spot decides they are right and declares "It does feel best to be just me!" And they all lived happily ever after in their warped, wrongheaded world.

As the parent of a child with disabilities, I may be sensitive to negative messages about people who aren't seemingly perfect. Really, though, any parent should take exception to reads like these. Kids learn that it is not good to be overweight, tall or small. And that if someone doesn't appreciate your efforts at changing yourself, then you should keep trying to make them happy. And that spots are not your best fashion accessory. Who in their right minds at the book company—it's an imprint of Random House, a biggie—decided that this book is beneficial for impressionable young minds?  

A bunch of reviewers over on Goodreads agree with me, but there were many more who thought this was a great book for introducing children to positive thinking, pride, being yourself and unicorns. OK, not unicorns. People also appreciated the "fun" rhymes. Which is sort of like saying the propaganda the Nazis spread during WWII was well written.

Ted Geisel passed away in 1991; maybe he was already checked out when this book was published? Maybe he wasn't overseeing books that were part of this series? I can't imagine he would have endorsed it. I don't even know what to do with this book because I can't bear to give it away and risk another child reading it. I'm not one to toss books, but this might be my first. For now, I'm hiding it in the attic.

A is for Aargh! B is for Boo! And C is for Come on, book publisher, stop printing this crap!

Tuesday, February 26, 2019

Having children with a big age gap and the stuff nobody tells you


"Oh, is he your little surprise? Ha ha ha!"

"Is he from the same husband as your other two, if you don't mind my asking?"

I've gotten used to the questions—they don't faze me. What continues to take me by surprise: the dynamics of juggling children with a big age gap. Sabrina just turned 14, Max is 16 and Ben is 3. Our family feels complete...and also, at times, like a circus.

This is the stuff nobody told me about having children with a large age gap. Not that I asked.

You delude yourself into thinking you already have all the baby stuff  

The drop-side crib we had for our first two was actually a death trap, according to the Safety Product Commission people. Their stroller is long gone. And you wouldn't think baby clothes would look that outdated in a decade, but they sure do. So we basically started from scratch with baby clothes and gear. It was fun, other than having to decide between the eleventy billion things that didn't exist last time around, and paying for them.

You become a born-again mom

When Ben was a baby, Dave and I were like new parents all over again—we did not remember much of anything about childcare. This was evident from the day Ben arrived home from the hospital and we had to google "How to give a newborn a bath." Then we roped in Sabrina and Max to help. Cleaning bottles, sleep training, the timing for baby milestones: no recall whatsoever. The momnesia continues now that Ben's a preschooler: Wait, why's he having temper tantrums at age 3? What is up with catching nasty stomach bugs at preschool? Why does he love putting his fingers by the cabinet door hinges? Why will he only pee in the potty? Oh, wait, this sounds vaguely familiar (a phenomenon known as deja poo).

The schedules are out of control

Sabrina has basketball. Max needs to go to a program. Ben's coming along for the ride. Getting everyone to their activities leaves me dazed. I knew to expect this, but still: OMGeeeee. When other parents offer to drive one of my children somewhere, it's like I won the lottery.

Trying to find something all our children want to do? Bwaaaaaa ha ha ha ha


On weekends, DH and I are usually in conquer-and-divide mode because there's just no figuring out an activity one preschooler and two teens will be into. If Ben has a little-kid birthday party, I'll take him and Dave will hang with one or both of our other two. Or Sabrina will stay home to slog through schoolwork, and the rest of us will do something intellectually stimulating like shop at Target. Dining out is pretty much the one outing we can do as a family, although we no longer go to nice restaurants because:


THE DRAMA. Ohhhhhh THE DRAMA.

As if dealing with the hormones of a teen girl and a teen boy aren't enough, I am also faced with the  a preschooler dictator who is prone to screeching "YOU NO DO THAT!" and "YOU NO SAY THAT!" Then there are the times when Sabrina and I are having it out because I'm being mean and making her clean her room or something and poor Ben is witness to it. "No lelling!" he'll say. ("No yelling!") And I'll wonder how many years of therapy Ben is in for.

It's great having a built-in babysitter...except when your child acts like she's the mother

Ben's big sister is his BFF. He runs to the door with a squeal when Sabrina, aka "Mena," gets home from school. He sits on her bed and chills while she does homework. She watches him when I go out to do errands, plays with him when I'm cleaning up around the house, gives him baths, loves picking out his outfits and is generally an awesome big sister. And then, there are the times when she decides she is actually his mother.

Me at 6:30 p.m.: "Ben needs a good snack, he didn't eat so much today."
Sabrina: "Benny, want some ice-cream?"
Me: "It's not a good idea for him to have so much sugar before bedtime."
Sabrina: "But the sugar will fatten him up!"
Me: 😳

Then there's the sibling rivalry

"Mommmmmy, I need you to build a tower !" That is Ben asserting himself at the exact moment that I've sat down to help Max with his homework at the kitchen table. Reasoning with a three-year-old is impossible. And so Ben will wail as Max attempts to get through his worksheets. Ben also does not like it when Max or Sabrina walk downstairs before him, when they get into the car before him, when they do anything before him. You wouldn't think there'd be much rivalry when two kids are 13 years apart. But.

Some of your child's bad influences are right at home

Our little guy ends up watching and listening to stuff way beyond his years when I'm not paying attention. Which explains why his favorite song is a rap song called Steal Her Man. He has substituted some nicer words.


There's a whole new generation of TV fights 

For years, Max and Sabrina duked it out for the Battle of the Remote Control. She wanted to watch teen sitcoms. He wanted to beam YouTube videos of fire trucks onto the screen. Now Sabrina's glued to Instagram, and Max and Ben go at it. The other day, as Ben tried to watch Sesame Street, Max stood in front of the TV with his arms outstretched to block it. Ben, meanwhile, likes to grab the remote control when Max is watching TV, turn it off and run away with it. Good times.

You will still be forced to endure the torture known as Thomas the Tank 

How is it possible Thomas the Tank is still on TV and kids still like watching him? Not. Fair.

You suck even more at sleep deprivation


Ben gets up at 5:30 a.m. because he didn't get the third-kid memo and Dave, my angel husband, gets up with him. And when Dave goes away on business and it's me rolling out of bed at that ungodly hour, I am all I am too old for this.

Sometimes, it gets lonely

My longtime friends have middle- and high-school-age kids, so playdates are pretty much out of the question. Then there's the fact that I'm going through stages they can no longer relate to. When we all had young kids, we sat around and talked about potty-training, pacifier obsessions and other challenges, but that just doesn't cut it as dinner conversation anymore.

There are now three human beings who think you are the worst and who happen to be your flesh and blood

"I hate you!" says Max.

"You're the worst mother ever!" hisses Sabrina.

"Mommy not nice!" says Ben.


But then...


Your little one is the best gift ever, for everyone.

No matter what chaos is going on, there's Ben—our feisty, funny, adorable, big-eyed, kissy-lipped, wise-beyond-his-years sweet boy. We each have our own special relationship with him.

Right after we brought him home

A toddler daddy all over again

On our last vacation

At Ben's third birthday party

I love how Dave, Max, Sabrina and I look at each other and crack up whenever Ben says something adorable.

I love the cuteness overload when I see Sabrina or Max playing with Ben.

I love the way Max looks after him.

I love when we teach him to do random stuff, like giving the side eye (oh, yes, we did).


You're a more chill mom. 

Some also refer to this as Third Child Syndrome. He's eating off the floor? NBD. Walking around in dirty clothes? About to jump off the bookshelf? Whatever.

You relish a thousand little things you never thought you'd do again with a little person

It's all amazing: pushing Ben on the swing at the park, rolling toy trains around tracks, doing This Little Piggie on his toes and pretending to take his nose, singing Laurie Berkner songs in the car, making Play-doh creations, sleep-stalking him because he looks so sweet, seeing the sheer delight on his face when he's on a swing or gets a lollipop, walking down the street and holding his little hand, answering his constant "why?" questions, chatting with him in the car, cuddling on the couch and watching Sesame Street, coloring pictures on the kitchen table, getting his hair cut with little-boy bangs, making up nonsense songs or just listening to him talk in his little voice,  the way he runs into my arms when I pick him up from preschool, reading to him at bedtime in the same rocking chair I had for for my olders. Oh, the snuggling.

Bonus!

We had the right girl/boy ratio to do this on Halloween.


Not to mention!

People like the guy at the pizza store where I take Ben every Friday after preschool, who upon finding out that I have two teens said, "Wow! You look so young!"

Life is a wacky whirlwind. And I wouldn't trade it for anything.

Monday, February 25, 2019

In which Max gets an iWatch and calls me all the time


We've been meaning to get Max a tracking device, mostly so I know his whereabouts when he's on his school bus. We've also been wanting to get Max a phone—his teen sis has one, and we felt it was only fair. But manipulating it is hard for him. So we started looking at the Apple Watch and this weekend, got him one. Everyone's into it.


Thanks to the Find My Friends app, I will be able to tell where Max is at all times. But I suspect I actually won't be needing it much because Max has been calling approximately every 12 minutes.

"Hi, Mommy!" he'll say when he calls from the car. 

"How are you?" he'll call and ask from the other room.

Me: "Max, why are you calling me while you are sitting on the couch next to me?"
Max: "Ha ha ha ha ha!"

"I want to move to California!" he'll inform me when he's at a restaurant with Dave. Ever since their boys trip last week to Disneyland, he's ditched his dream of moving to Orlando and has switched to California goals. Dave decided to enable this fantasy by getting Max a California phone number. At first, I ignored his calls because Santa Monica kept popping up and I thought it was spam.

When Max is not calling, he is checking the weather in California, texting and asking me to call him or letting me know other important information.


Some controversy has cropped up. When I ask Max what time it is and he'll tell me, say, 8:39, Ben will disagree. "No, it's 8:37!" Ben will proclaim. This despite the fact that Ben has no clue how to tell time, but he is very much into sibling rivalry.

Max is so excited by this gadget that I am now only allowed to call him when he and Dave are out together. I am excited by his dexterity—he's doing a great job navigating the screen. Isolating his pointer finger is something his occupational therapist worked on for years when he was a tot. Max is still figuring out how to press the button on the side of the watch, which takes you back to the home screen.

Once again, I'm feeling grateful for technology that opens up worlds for Max. Oh, and if anyone needs me, I'll be on the phone with Max.


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