Friday, March 29, 2019

The Disability Blogger Weekend Link-up awaits you


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: I'm going for a walk, Max said

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 28, 2019

Hey, parents, let's play Would You Rather


Max's speech therapist at school likes to play Would You Rather with him, to practice conversation and reasoning. She shared some questions for us to enjoy at home: Would you rather travel around the world in a hot air balloon or in a sailboat? Would you rather have to always eat off dirty dishes or always wear filthy clothes? Would you rather your picture be on the one dollar bill or on every magazine and newspaper once? Max loves it.

Here's a little game for us parents to play!

Would you rather stay on eternal hold with the insurance company or would you rather wait online at the DMV?

Would you rather watch Frozen/Thomas and Friends/[insert your child's movie or TV addiction here] for the bazillionth time or would you rather listen to nails on a chalkboard?

Would you rather try explain to a relative, yet again, that your child won't "grow out of it" or that you're not "spoiling him" or would you rather hide in the kitchen because you're "busy cooking" and generally try to avoid them as much as possible at family gatherings?

Would you rather attend an IEP meeting or would you rather get a root canal?

Would you rather let your child eat mac 'n cheese for every meal or would you rather...let your child eat mac 'n cheese for every meal?

Would you rather get an annual salary for all that you do as a mom (an estimated $828 836!) or would you rather win the Nobel Peace Prize?

Would you rather fill out yet another form and more paperwork or would you rather try on swimsuits?

Would you rather deal with a Pity Stare from a stranger or would you rather deal with a "God only gives you what you can handle" or "God only gives special children to special people" comment?

Would you rather attempt to logically explain to the insurance company why your child needs speech therapy/physical therapy/occupational therapy/ABA therapy/orthotics/a walker/an electric wheelchair/SURGERY, or would you rather plead and wail and be on the verge of TOTALLY LOSING IT ON THE PHONE WITH THE REP BECAUSE WHY DO THEY JUST DO NOT GET IT OR CARE?!!

Would you rather pay $1,149.95 (actual price!) for a fiber optic curtain that has a calming effect on children with sensory needs or would you rather pay your mortgage?

Would you rather try to get your child to brush his teeth or would you rather deal with it tomorrow because for sure you will be able to get him to do it then?

Would you rather let your child watch his iPad in a restaurant for the entire meal and deal with the judgment from people at other tables or would you rather he get all riled up? 

Exactly!

Wednesday, March 27, 2019

The texts that are almost too good to be true


Like many teens, Max is into texting. He does it from his new Apple Watch. We got it so he'd have another form of communicating, and to track his bus trips to and from school (Find My Friends has also come in really handy for his neighborhood excursions). Phones don't work well for him, because he has trouble simultaneously holding onto one and navigating the screen.

Max uses the pre-populated phrases and words that crop up, so his texts are pretty simple. He likes to get in touch in the morning on the bus and on his way home, although there are times when we are sitting together in the living room and he'll text me. 



Max is also fond of calling from his watch. If I'm in the car and go to call Dave, he'll insist on doing it from his watch. When he and Dave are out having one of their eating adventures, he'll call to report on what they're consuming. He likes to check in with his grandparents and my sister. 

I am utterly enchanted. To be sure, it's not mind-blowing that Max is texting—he's a competent boy who loves to engage with everyone around him. It's the part of my heart that still harbors the anxiety from the early years, when he couldn't say the words "no" or "yes" or shake his head no or yes and I worried so much about what the future held for him. 

Now I am in that future and Max communicates in all sorts of ways with devices I couldn't have even imagined back then—a WATCH that MAKES CALLS—and I am so, so grateful, for the technology and the ability. The only thing that frustrates Max is that the watch can't translate his speech to text, because it can't quite discern what he is saying. Maybe someday, soon, it will. The Voiceitt people are working on the world's speech recognition technology designed to understand non-standard speech, and it gives me great hope.

Dave and I were talking about the watch last night. Our friend June had gotten Max a red band for it, and Max was thrilled. Dave showed me the texts Max has been sending him and it turns out that Max texts him way more often. 

Hmph.  


Tuesday, March 26, 2019

I'm going for a walk, Max said


"I'm going for a walk," Max said, as if it were no big deal. It started a couple of weekends ago. Sabrina and I were arguing, and Max didn't want any part of it. But instead of chilling on our front porch, as he likes to do when he needs a break from family drama or just wants to be alone, he'd decided he was taking a walk. We stepped onto the front porch.

"Where do you want to go?" I asked. Max gestured around the corner.

Max had never been beyond our block by himself.

A lot of thoughts went through my mind, scary ones. Max knows not to talk to strangers. But would he walk further away than he was supposed to? Could he fight off a creep in a car if one tried to abduct him? There was that story about that young boy in Brooklyn, NY, whose mom let him walk home alone from camp for the first time and a deranged man lured him to his apartment, hacked him to pieces and stuffed him into a refrigerator. My mind is a repository of awful things that have happened to children.

My main reassuring thought: Max recently got an Apple Watch and we now can track him via the Find My Friends app. My other, somewhat less reassuring thought went something like this: Max is not such a lightweight. When you lift him, he is dead weight because his body just sort of sags into you. So maybe his cerebral palsy would save him from a Bad Guy.

I know, I know: Total and utter mom paranoia.

To Max I said, simply, "Yes, you can take a walk. Just look both ways, OK?"

I thought about posting a heads up on our local neighborhood Facebook group. And then, I held back. I decided to let him go it truly independently.

Max carefully walked down the steps of our porch and took off, grinning. I watched till I couldn't see him anymore, my heart twinging. I kept my eyes glued to Find My Friends, following the orange dot that was Max, until I got distracted by my fight with Sabrina. Then I realized I've gotten a series of texts from a neighbor:

Max is out walking by himself. Is this cool with you? 

Just checking I've never seen him take a walk alone. 

Now he's walking home, and he seems fine! His independence is awesome! Sorry I'm just watching out for my neighbors, don't mean to pry. 

I told the other mom that it was nice of her to check on him. A couple minutes later, I saw orange dot headed home and stepped onto the porch. Max still had that big grin still on his face.

Phew. 

Letting your child with disabilities flex his independence is really, really hard, as much as you may want it. It takes time to accept that this child you've coddled by necessity for so many years, this child who has been dependent on you for so much, will be OK when you are not right there to look after him. It's about baby steps—for your child and you.

A few days later, I was at another neighbor's house and she told me that she also saw Max taking his walk that day and he looked awesome. I beamed at her.

This weekend, Max was out and about again. He'd go a block or two, come back home, then go out and do the same all over again. Each time, I was glued to Find My Friends. Once, when the orange dot seemed to veer slightly off the lines that were streets, my heart stopped—had Max gone into someone's home he didn't know?! But a few seconds later, orange dot was moving again.

Another message arrived from a neighbor. We have an artist in our neighborhood who's built a gigantic skull sculpture. It may not have received the warmest welcome from everyone around here, but it seemed that Max, my friend reported, "was so thoughtfully examining" it and other stuff in this person's yard. I seriously loved that.

Yesterday, Max headed out after he got home from school. I was in the kitchen with Ben when the doorbell rang. It was one of the guys who cuts our lawn, typically a man of few words.

"MAX IS ON THE OTHER BLOCK WALKING BY HIMSELF!" he announced, breathlessly, lit cigarette in hand.

"Yes, I know, thanks—he's good!" I said. "He's a teen. We're letting him take walks."

He nodded, took a puff and took off.

"Thanks again for letting me know!" I said to his back. He waved.

Oh, my heart. This somewhat curmudgeonly dude was looking out for Max.

Yes, it takes a village. And a leap of faith. And repressing your usual mom-of-a-child-with-disabilities instincts. And maybe a nice big glass of wine.

Monday, March 25, 2019

Not-so-nosy questions about cerebral palsy, answered: Cerebral Palsy Awareness Day 2019


OK, how do you pronounce cerebral palsy?
Suh-reeb-ral palsy, here in the U.S. "Cerebral" means relating to the brain; "palsy" refers to weakness or challenges using muscles.

Is cerebral palsy a disease?
Nope. It's a disorder of movement. There are three basic forms: with spastic cerebral palsy, the most common form of cerebral palsy, muscles are often stiff. Max has mild four-quad spastic CP (which means it affects all four of his limbs), along with a major case of awesomeness. People with athetoid cerebral palsy often have slow and writhing or fast and jerky hand, feet, arm and leg movements. Those with ataxic cerebral palsy often have poor coordination and may walk unsteadily and have trouble their arms or hands when reaching for something. Some people have mixed forms of CP.

Cerebral palsy isn't that common, is it? Aren't there more autistic kids?
An estimated one in 323 children has cerebral palsy, according to the Centers for Disease Control and Prevention (CDC), while about one in 59 has autism, per the CDC. Cerebral palsy is the most common motor disorder among children in the United States. It happens more frequently in boys than girls.

Does cerebral palsy affect people physically and cognitively? 
It can have an impact on both, depending on where in the brain the damage occurred in utero or at birth (Max had a bilateral stroke at birth).  Since the brain sends the muscles signals for movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected by CP, along with speech, cognition and vision. There can be feeding issues, given that your tongue is a muscle, along with swallowing. Some people have physical disability but not intellectual disability; it's more rare for the opposite to occur.

Why do some people with cerebral palsy hold their hands in a different way? 
When spasticity occurs in someone's arms the flexors tighten up, pulling in the elbows, hands and wrists. A person's hands can form tight fists. Whether that looks "funny" is all in your perspective. Max may hold his hands differently than most other people or walk and talk differently but that's Max. We all have our differences; some are just more visible than others. One of the many things my boy has taught me is that people's bodies function in a variety of ways—it's all part of the glorious spectrum of the human race. There may be "typical" ways to talk or walk or move but there are no "right" ways.

Does cerebral palsy hurt?
It can—muscle pain, hip issues, and reflux can be issues, to name a few. Max's muscles get pretty tight at times, and while he does not complain it could be because he's used to it. When I've written about Max's desire to move to Florida and/or California, adults with CP have pointed out that it could be because his muscles feel more relaxed in warmer weather.

Is cerebral palsy curable?
It is not. Various forms of therapy have helped Max work around his gross-motor, fine-motor, and speech challenges. He is still figuring out what it means to have CP. There are adults with CP who bristle at the idea of "curing" it, as they consider CP an integral part of who they are. I hope Max will, too.

Can cerebral palsy get worse?
CP does not get worse over time, but symptoms can change or improve, sometimes depending on circumstances. Coldness makes Max's muscles tighter. So does excitement or anxiety. Max's tendons got tighter in one foot over time, and in 2017 he had a procedure called Selective Percutaneous Myofascial Lengthening to correct it. Still, Max has never stopped making progress. He crawled on all fours at age two. He took his first step at age three. He said his first word ("no!") at around five. At 16 years old, his speech and intellect are still improving, and he continues to learn how to manipulate his hands to get things done.

Isn't it crappy to have CP?
It bothers me when people give Max The Pity Stare. He is a cheerful, fun-loving, sometimes stubborn teen (as teens can be) who is living his best life. At times, Max gets frustrated when he his body won't do his bidding, but he either asks for help or figures out another way. He doesn't see himself as unfortunate. Me, I struggled during the early years. As I've often said, society does not prepare you for having a child with disabilities—people have long considered it tragic. But now Max is just Max to me, a child as perfectly imperfect as any of my children.

Friday, March 22, 2019

It's time for The Disability Blogger Weekend Link-up


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

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 21, 2019

A day to celebrate people who actually aren't so special


Today is Down Syndrome Awareness Day. March is Cerebral Palsy Awareness Month. April 2 is World Autism Awareness Day. There's a whole lot of disability appreciation happening out there. Today is also the last day of the Special Olympics World Games, which is taking place in Abu Dhabi. Photographer Brandon Stanton of Humans of New York's (HONY) is there, and last night I was browsing his Insta feed. I looked at the beautiful faces he'd captured and the quotes from the athletes and the staffers he got, and one thing stood out.

We need awareness days and dedicated events for people with disabilities to build their confidence, give them the means to succeed, raise them up and call attention to their greatness, because the world does not respect, value and include them enough. But people with intellectual and physical disabilities are not so different from the rest of us, as I well know from raising Max—and as I was reminded in these snippets from HONY.

People with disabilities are self-motivated.   

"I have twenty superheroes that I keep in a folder on my phone and I take it out to look at them, and I pretend that I am the leader of an entire superhero team. The whole team is counting on me to get as strong as possible because I am the muscle of the team."

They can push past their fears. 

"For me I would describe myself as Aspergers, meaning not understanding what's happening around you and all that stuff.... Tonight I'm doing a poem for the opening ceremony about being the same as everyone else. It's going to be live on the TV. I'm excited but also a little nervous to be honest. I'm going to pretend like the stadium is empty except for all my friends that I love. My parents are very proud of me. They said, 'Look at Nazeer. Our shy boy is no longer shy.'"

They have major team spirit. 

"I have to be happy and positive because I am the basketball team captain. Whenever we make a shot, I clap. I also clap if we miss it. And I clap if the other team makes it. If somebody is sad, I tell them don't be upset, my sweetheart.... Yesterday we won. But it doesn't matter if we lose because at the end we always dance."

They are aware of their challenges, and don't make excuses for them.

"Sometimes my brain processes things difficult. I just need more time. And in school everything needs to be fast. You always have to know what's going to happen next and it can be hard to make friends."

They have ambition.

"My name is Ariel and I'm from Costa Rica and my dream is to be a journalist. I have an Instagram page where I am going to put all my interviews. This week I would like to cover the feelings of the athletes and parents and coaches. I ask questions like 'Are you having fun?' and 'What is your favorite sport?' and 'Are you enjoying Abu Dhabi?' My mom is helping me think of the questions to ask.... She reminds me to talk slowly. And to say 'Yes, sir' and 'no, sir." And to love people. And not to say bad words."

Even as we celebrate people with Down syndrome and cerebral palsy and autism and cheer them on at the Special Olympics and try to rack up respect, let's keep bringing it back to their humanity. People with disabilities are not "special" for having disabilities, because that would make them a whole other class of human beings. They are people, period, who ought to be recognized that way. My son's disabilities are one part of who he is—and not a negative part or a defining part. Ask me to describe him and I'd say he is a boy with a gigantic personality, exceptional charm and the biggest heart. (Not to mention, good hair). And yeah, I write a blog about raising him and other children with disabilities in large part because as a parent, I struggle to get people to see Max and not his cerebral palsy and I ache to open people's eyes.

Is he "special"? Well, of course my son is special to me, his mom, same as each one of my children is special to me.

And of course people with disabilities can have "special" needs and challenges, as do people of all varieties.

And of course people with disabilities need "special" accommodations, to level the playing field and enable inclusion in a world that often shuts them out.

And of course there are "special" and exceptional disabled people—same as in the general population.

There's beauty icon Madeline Stuart

And comedian Zach Anner, who has cerebral palsy

And actress Lauren Potter, who has DS 

And the brilliant physicist Stephen Hawking, who has ALS

And singer Andrea Bocelli, who is blind

Maybe someday, there won't be a need for awareness days for disabilities because people with disabilities will be truly integrated into society. Maybe they will be just ordinary people (ordinary!) who are part of the glorious gamut of human beings, ones who have strengths and aspirations and imperfections and passions and all the emotions, like any one of us. Maybe people will give them the respect and equality they deserve every single day. Maybe they will no longer be "special" because in the end, they are as unique as you and me.


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, which started when the woman became the man's full-time caretaker. The man, who is a quadriplegic, needs a fair amount of support. He'd become emotionally abusive. Dr. Phil's assessment: he told the boyfriend that if his partner remained his caregiver, she would not be his girlfriend. His words: "It won't work, 100 out of 100 times this won't work." A bit later he affirmed: "She can be your lover or she can be your caretaker but she can't be both." (Here's the link to the clip from the show). 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.


Update: Here is the link 

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.