Monday, May 10, 2021

Elon Musk's autism announcement: Someday, it won't be a big deal to have a disability

Elon Musk's announcement on Saturday Night Live that he has Aspergers made headlines this weekend, not surprisingly. "I'm actually making history tonight as the first person with Asperger's to host SNL," the Tesla CEO said during the monologue, and the audience applauded. "Or at least the first to admit it. So I won't make a lot of eye contact with the cast tonight. But I'm pretty good at running 'human' in emulation mode."


There was immediate backlash on social media. People pointed out that Dan Aykroyd, one of SNL's original cast members, has spoken about his Asperger's diagnosis as a child. Others were concerned about use of the term Asperger's, which was eliminated as a diagnosis in 2013 and folded into the umbrella diagnosis of autism spectrum disorder. Some felt that Musk was perpetuating stereotypes. As Erin Ekins (@QueerlyAutistic) noted on Twitter, "The only 'awareness' that Elon Musk brings about autism is in regards to a certain presentation of autism (white, male, techy, awkward) which is literally the most over-saturated and represented presentation of autism across the media and society."

I understood the reactions. At the same time, I wondered if Musk's announcement could also be good for the autism community—one of the world’s most successful people publicly embracing autism might help soften the stigma. I wondered if that might have been what motivated Musk to speak up.

Most of all, I found myself wishing that it wasn't such a big deal. I've had the same reaction when people with Down syndrome, cerebral palsy or autism are in the news for being crowned prom king or queen or homecoming queen, for modeling in ad campaigns or appearing on magazine covers or for any achievement that typically wouldn't make headlines...except it did because a person with disabilities had achieved it. 

Last week, I got an email with the subject line "Disability isn't the opposite of ability." Yes, I thought: THIS.

I dream of the day when disability is perfectly ordinary and society truly understands that we are a world filled with people of all abilities—and that's a wonderful thing. 


I yearn for a time when people like my boy Max will not get second glances or glares or any of the extra attention that comes with having a disability.

I yearn for the day when people with disabilities will be such an accepted part of our society that they won't feel the need to come out. 

Friday, May 7, 2021

The Disability Blogger Weekend Linkup is good to go


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Thursday, May 6, 2021

Mom for the win, every single day

I pulled off a major feat of repair last night. The garbage disposal had inexplicably stopped working and resetting the power button hadn't done the trick. Given that nobody in the house had noticed or cared that we no longer had a functioning garbage disposal, I had added it to my list of One Million Things To Do. But I had some dinner remains that I wanted to grind up, and I got it into my head that I was going to fix it. 

I pulled out the various bottles of cleaner beneath the sink, sat down on the floor and scoured  YouTube. I discovered that there was a good chance a thingie called an "inner flywheel" was jammed. And I had better not stick my hand down the garbage disposal! Which I had, of course, done More googling ensued to figure out what an "inner flywheel" was. Also, I needed an "Allen wrench" thingie to loosen up the "inner flywheel" thingie. 

Our junk drawer is either the most messiest part of our house or the most magical, depending on the day. I dug through it and unearthed a mini metal rod that had a bent end, kind of like the Allen wrench. It was in a plastic baggie with a stickie I'd written that said, "If Ben ever gets stuck inside the bathroom, use this to unlock the door." I shined a flashlight on the underside of the disposal, spotted a center hole and tried to move the rod inside it except it was too thin. So I headed back to the junk drawer and that's when I found a legit Allen wrench thingie, complete with the note I'd also so wisely scrawled on a stickie: "Garbage disposal wrench." 

I mean. Who in my family would ever think to actually save the wrench that came with the garbage disposal, actually store it in a bag, and actually put it in a place that made sense? 

In a word: MEEEEEEEEEEEEEEEEEEEEE!

Already that day, I had scored dozens of unrecognized, unacknowledged, unappreciated and unsung mom wins including:

• Once again, I SOMEHOW REMEMBERED TO FILL OUT THE COVID FORMS FOR SCHOOL DURING THE USUAL MORNING CHAOS.
• We ran out of Worcestershire sauce BUT I HAD AN EXTRA BOTTLE IN THE CABINET. Along with backup jars of other Important Condiments like Nutella.  
• Nobody could find a left soccer cleat UNTIL I DUG IT OUT OF THE CLOSET.
• There was a medical form for one of my children that was supposed to be dropped off at the doctor's office by Someone in My House because I had delegated it to him owing to my list of One Million Things To Do and I PESTERED THAT SOMEONE UNTIL HE DID IT.
• There was a clear sticky mess all over the floor in front of our fridge, likely apple juice, that nobody noticed—there were actual footprints in it and how can you step on a sticky mess and ignore it but anyhoo—AND I CLEANED IT ALL UP, INCLUDING THE SATELLITE STICKY SPOTS THAT HAD GOTTEN IN OTHER PARTS OF THE KITCHEN.
• Also, our glass table outside had turned a not-lovely shade of green because of the pollen—there was an actual outline where someone had put a book on it and how can you just put a book on that stuff and ignore it but anyhoo— I CLEANED AND SNEEZED AND CLEANED AND SNEEZED. 
• As the unofficial remote control first responder in our home, I RESCUED THE APPLE TV REMOTE FROM UNDER THE SOFA CUSHION. 
• I noticed one of the bathroom hand towels was full of mystery grime AND I PUT A NEW ONE IN, SPARING MY FAMILY FROM MYSTERY GRIME. 
• There was a whole pile of mismatched socks lying on a chest in Max's room that nobody wanted to deal with AND I MATCHED THEM ALL UP.
• Ben is obsessed with the show Miraculous Ladybug and unfortunately the dolls break within about five minutes of getting them and I know this because we are on our fifth set and Cat Noir's legs fell off and  I CLEVERLY FIGURED OUT HOW TO REATTACH THEM WITH RUBBER BANDS. 
• While I was in the backyard planting grass seed for the spots that had gotten destroyed by outdoor toys and playsets, I noticed a tall branch randomly sticking out from a rose brush AND I WENT TO THE GARAGE AND GRABBED OUR CUTTING SHEARS AND CUT THE BRANCH DOWN, THEREBY RESTORING FENG SHUI TO OUR YARD AND ENSURING THAT EVERYONE WOULD HAVE A ZEN SPRING, AND I EVEN WIPED DOWN THE CUTTING SHEARS SO THEY WOULD NOT RUST. Amazing, amIright?
• In a trifecta of household negligence, three bathrooms were completely out of t.p. AND I REPLACED ALL THE T.P. (You may have read about my talent for noticing we are out of t.p. several years ago here.)
• Ben's preschool had asked for photos of him over the years to share for his graduation ceremony and I DUG THROUGH THREE YEARS OF PHOTOS OF BEN AND FOUND GREAT ONES.
• The lovely pink begonias I put into the planter on our front porch that nobody waters except for me were wilting AND I REMEMBERED TO DO IT AND SO WHAT IF IT WAS 1:05 A.M. CAUSE I'M PRETTY SURE NOBODY SAW ME IN MY NIGHTGOWN WITH A WATERING CAN ON OUR FRONT PORCH.

Mom win win win win win win win win win win win win win etc.

So many mom wins every single day, every single month, every single week, every single year. And there I was with my Allen wrench thingie, scoring yet another. I lay down on the floor, shined the flashlight on the disposal and inserted the wrench. This time it caught, and after wiggling it back and forth a few times I felt something come unstuck. When I jumped up,  turned on the garbage disposal and heard that sweet whirrrrrrr, I said "YEAH!" out loud to the empty kitchen.

As I was putting the bottles away beneath the sink, Dave walked in. And I just had to give credit where it was due. 

"Honey, I fixed the garbage disposal!" I proclaimed. 

"You did? Wow!" he said with not as much enthusiasm and appreciation as I felt I deserved. 

I pressed on: "Would you believe I actually saved the wrench it came?!"  

"Wow!" he said again. "Amazing!" And then he went off in search of a seltzer. 

And I realized that in his mind, I had simply fixed the garbage disposal and in my mind, fixing the garbage disposal was the equivalent of sending astronauts to outer space because that's pretty much the level of credit I deserve for everything I do. 

So he got his seltzer and I put away the bottles under the sink and tucked that Allen wrench thingie into the little plastic bag and socked it away in the junk drawer, where it will remain until the next garbage disposal mom win. 

The end.*

*Not really.

Wednesday, May 5, 2021

Oh, yes, our children are fighters

We found out this weekend that a young man with medical complexities who we've known for years  passed away on Friday. Josh's parents, Erica and Steven, had filled his life with family fun, activities, Friendship Circle events, trips to Disney World and all the love and devotion. 

During the virtual funeral service, Steven asked people to picture what a fighter would look like. He noted that he imagined we might have been thinking of someone who likes to shout and argue. But, no: Josh was a fighter. He had endured many, many surgeries in his 21 years, persevering with spirit and tenacity.

I've been thinking about Josh a lot these last few days, once when Max was climbing up our front porch stairs. He was grasping the hand rail with all his might, and struggling to find his footing on that first step. He'd put his weight down on it, get wobbly, then step back. Start, then step back. Start, then step back. Just as I was about to lend a hand, he lifted himself onto the step and motored on up. 

Obviously, people with disabilities navigate life the best that they can—they aren't heroic or inspirational for doing that. But it takes a certain inner force to constantly surmount obstacles, be they physical ones or 
the biases people have. To endure surgery after surgery and medical intervention after medical intervention, as Josh did. To maintain your sense of humor, as Josh did. I have a vivid memory of him from years ago. I'd taken Max to an event at a museum, and by the time we headed out, Max was grouchy. We found Josh waiting outside with his mother, his dad had gone to get the car. Max stood by Josh's wheelchair and I don't remember exactly what went on between the two of them but Max cracked up. In the car he said, "Josh is funny!"  

Our children are fighters isn't something that parents of children with disabilities say to reassure ourselves about the challenges they face. We know it. We see it. We live it with them. Our children have shown us strengths that we ourselves have never had and superpowers we never could have imagined. They are heavyweight champions of tenacity. They are everyday warriors. 

Rest in peace and power, Josh. Your strength and spirit will forever stay with us. 

Friday, April 30, 2021

The Disability Blogger Weekend Link-up: Go on, post!


What to do if you're new  

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Thursday, April 29, 2021

Sometimes, independence comes in growth spurts


Developmental spurts have never been a thing in Max's life. Progress has happened bit by beautiful bit, hard-won all of it. A step here, a hand movement there. A consonant uttered, a word read. An understanding gleaned, a lesson learned. But lately, Max's has been having an independence growth spurt, and it's awesome.

A couple weeks ago, I was in my attic working when I heard Max arguing with our sitter. She was going to assist him with showering, only he wasn't having it. I walked downstairs to see what was wrong. It turns out that Max wanted to take off his own pants, and he was agitated because the sitter hadn't caught on. I explained to her that he wanted to do it himself.

That was the start of Max's indie streak. When we eat out, he has insisted on ordering his own food. When he and Dave went to Home Depot this weekend to make a return, Max grabbed the receipt from David's hand and handed it to the cashier. He wants to take walks alone. He wants to know days ahead of time what we're doing on the weekend, and he makes us stick to it

Max has always been determined and, uh, opinionated, so he's totally in character. Still, the go-it-alone drive is astounding. Not just because my boy wants to spread his wings and fly, but because he is capable of breaking out of his cocoon of comfort. Dependency has been a key part of his existence, and the DIY mind shift is major. 

During Max's early years, all of my hopes centered around whether and when he'd be able to do x and x. These days, my greatest hopes center around Max making his own way in this world. Dave and I and Team Max are there to provide the support. But Max is leading his own independence charge, and we're awed by him and so proud.

This summer, one of Dave's friends is getting married in Los Angeles. Max was texting with my sister the other night and he informed her that will be going. As is the Jewish tradition, he plans to help lift Jeff up on a chair as the crowd dances around him—just like Jeff did for Max at his bar mitzvah. 

You go, Max. You. Go!!!

Friday, April 23, 2021

The Disability Blogger Weekend Link-up is here for you


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Thursday, April 22, 2021

The woman he wants to marry

Max told Dave last week that he would like to buy a wedding band. He pointed to Dave's, then informed him that it was for his Aunt Emily because he loves her very much. Dave and I have since explained several times that you can't marry your aunt, but Max won't listen. Meanwhile, Emily's husband jokingly agreed, which hasn't helped. 

I've had a lot of Thoughts and Feelings. 

Emily and Max have gotten especially close during the pandemic because she's been giving him yoga lessons in her studio every Saturday morning. It's one of the only places we've taken him this past year, and it it's been a great escape. Yoga relaxes him (a couple of times, he's dozed off), and Em is a warm and patient teacher. Sometimes Sabrina or Ben join in but mainly, it's Max's time.

I can understand Max's urge to marry his aunt, because she's awesome. It's also made me ponder ways I can expand Max's social network so he meets more people his age, although that is particularly challenging these days. After-school social events are indefinitely held. And it's not like Max was making new friends outside of school even before the pandemic started.

At times, I've struggled with the friendship and romance blank spots in Max's life. He is such a friendly, cheerful, charming person. He has so much love to give. But then, I have to force myself to consider the fact these are "blank spots" as view them—Max seems perfectly content with life as he knows it. The ache I felt in my heart when Dave told me that Max wanted to marry his aunt sprang from a deep-rooted expectation that my kids would grow up, fall in love and have a family of their own. It's a supposition shaped by my own upbringing, and a desire that comes from my own happy experiences with love. The thing is, they are mine, and not Max's. And it's hard to separate the two. 

As parents, we want our children to thrive, to experience all the joy, to live. Sometimes, though, we have to take a wrench to our hearts and minds and loosen up our perceptions about what that means. We need to recognize when we projecting our own ideas of happiness onto them and accept that every child—disabled or not—finds their own bliss in this world. 

Right now, Max has this notion he can marry his aunt, and I have this sadness about his relationship status. Clearly, there are things we both need to come to terms with.

Friday, April 16, 2021

The Disability Blogger Weekend Linkup is open for business


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Children and teens with disabilities, re-entry and the extra empathy they'll need

via Better To Be Different/Facebook

An awesome story is making the cyber rounds about a man in England who, upon encountering a 5-year-old with autism having a tantrum, proceeded to lie down on the pavement next to him, strike up a conversation and help him calm down. Mom Natalie Fernando told the story in a Facebook post that has gone viral

You might recall a similar story from a couple of years ago in which a Universal Orlando Resort employee did the same when an autistic child who lost it while waiting for a ride. And then there was that great story about officers calming an upset autistic man in the ER of a Chicago hospital by singing to him.

The rest of the world may see these people as saints, but to many parents of children with disabilities, they are both heroes and the exception. Natalie recounted that before the help from a stranger, "only minutes before Rudy and I were being tutted at stared at frowned at by a woman and a man with 2-yr-old in a pram trying to sleep despite me apologizing for my son's loud noises." 

How many times have we read those stories—people getting in a snit because a person with disabilities was causing a so-called "disturbance." The family kicked out of a restaurant owing to their four-year-old with apraxia whose speech was unclear. Patrons at a restaurant who moved away from a child with Down syndrome (and that waiter who stood up for him). If you're the parent of a child with special needs, you have likely contended with the disgust, discrimination and intolerance in some form or another. 

In the upcoming months, we are going to enter an unprecedented time in this world: re-entry. As a growing number of people are fully vaccinated, families will increasingly be leaving the safety of their homes and venturing out again to stores, restaurants and other public places. Children are returning to school. This is going to be especially challenging for many kids and teens with special needs for whom a change in routine is unsettling and distressing. It can be hard on those with sensory needs who aren't comfortable wearing masks. It might be upsetting or even scary for children to see a new world in which the majority of people are masked, lines may be longer and some of their favorite restaurants closed due to financial challenges from the pandemic. They may also harbor fears about the coronavirus.

April may be Autism Acceptance Month but for the indefinite future, we are going to need people to have more patience, empathy, understanding. consideration and kindness than ever. Nobody's expecting everyone to lie down on the floor but, at the very least, to not tsk-tsk at children who are having meltdowns or glare at their parents or caregivers. 

As Natalie wrote on her Facebook page, "If you see a parent struggling, maybe take the time to say 'Are you OK?', don't judge the parenting, try not to judge the child, just be kind.... Sometimes it just takes a moment of kindness from a complete stranger to completely change your day."

Choose kindness, people. Or at the very least, choose to stay silent.

Wednesday, April 14, 2021

Yet another dubious milestone. Yay?


Here's my boy, seen through our upstairs window, about to take a walk. I was headed into the shower and banged on the window to say hello. In return, I got his new favorite gesture. To anyone else, it may look like he is flashing a sideways peace sign. But, nope. Max was giving me the finger, yet another dubious milestone in his life.

It started when Max and I were having a standoff in the kitchen about something. He held out two fingers at me and stormed into another room. Hoooooooooo, boy. It was just a year ago that we'd "celebrated" the ock you milestone

Max knew exactly what he was doing. In fact, so did Ben. 

"Max can't hold up his middle finger so he holds up two," Ben explained, matter-of-factly. 

OK, then.  

Being rebellious is part of a young adult's job description. Max doesn't have as many ways to bust out as his peers do—he's not going to be staying out too late with friends, sneak-ordering stuff on my Amazon account or driving the car when he shouldn't. Still, he's doing pretty well:

Max: "NO!!! I AM NOT GOING TO SLEEP AT 10! AT 12!"
Max: "I want to walk to the fire station ALONE!"
Max: "Dinner is DISGUSTING! I'm not eating it!"

How typical is that?!

But Max is a sweetie at heart, and even when he's irascible, it doesn't last long and he does not hold a grudge. Sometimes when he gives me the fingers, he has this giant grin on his face. 

Of course, I have told him it is not OK. Of course, he does it anyway.

Denial and grace are my best defense. I sweetly flash the peace sign at him and say "Peace to you, too!" 

Friday, April 9, 2021

The Disability Blogger Weekend Link-up: Come on in!


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Wednesday, April 7, 2021

An acceptance letter for an amazing 18-year-old not going to college

April 7, 2021

Dear Max,

Congratulations! On behalf of the Office of Admissions (aka your parents), it is with great pleasure that we acknowledge your admission to the School of Life. Your exemplary academic record, developmental accomplishments and personal strengths have been thoroughly reviewed, and we enthusiastically welcome you.

As we continue to hear from friends about the colleges their teens have gotten into, as we see the exuberant Facebook and Instagram posts with grinning young adults holding up acceptance letters and wearing sweatshirts from their intended universities, we are thinking of you. At 18 years old, next year you will be in the same school that you have been in for the past four years, as your program continues until age 21.

But even if you are not off to college next year, even if you are unaware that you are missing a typical rite of passage, you deserve praise and kudos, too. As parents everywhere celebrate their high school seniors, we would like to take this opportunity to openly boast, toast and revel in you.

Your accomplishments and achievements in the face of challenges have convinced everyone who knows you that you have the brightness, determination and perseverance to flourish in the School of Life. Although there is no standardized test for emotional intelligence, if there were you'd score through the roof. Although there is no ranking for qualities like charm, cheer, affability and good humor, if there were, you would be valedictorian—your scores for the SAT (Spirit Aptitude Test) are remarkable.  These traits will get you everywhere, and continue to ensure your success in the School of Life. 

We would also like to commend you for opening up a whole new world to us and everyone who knows you. When we first learned that we would have a child with disabilities, we were so fearful of what the future held for you. But you have been a trailblazer in our mindsets, showing us the ability in disability and that there is no "right" way of doing things. You have proven top experts wrong, including the speech therapist who felt that your potential was tapped out at the age of 12 and the neonatologist who examined two-month-old you and announced, "His future looks ominous." 

Well, look at you now, Max. LOOK. AT. YOU. NOW. 

We know that following a different path is just that—not a lesser path, a different path. One that can be equally wonderful as the traditional one. And may we digress and say: Typical is overrated. 

You have been quite the innovator. You were literally the first person at school years ago to try an iPad and a speech app, and your technological prowess has exended to texting us from your phone and Apple watch to ask about moving to Los Angeles and whether we can go out for a steak dinner. You have mastered emoji. You have also aced some unique milestones, including the "ock you" one and cancelling therapy appointments on your own without letting us know. Ahem.

We have been duly impressed by your passion projects, including your plot to get us to move to warm and sunny Los Angeles, to become a firefighter, to set the world record for watching fire truck videos on YouTube, to paint our house fire-engine red (sorry, not happening), to relentlessly tease your little brother but also make sure he doesn't do stupid things like jump off the deck railing and to eat steak and sushi as often as possible.

While we, the committee, may admittedly lack objectivity, your admission is also based on recommendations from many, many teachers and therapists. The elementary-school teacher who called you "Smart Guy" to the point where you started referring to yourself that way. The music therapist you never fail to delight when the two of you make up songs about moving to Los Angeles. The therapists who, since you were a tot, have been awed by your fierceness—from the day you commando crawled, dragging your body across the floor when your little arms and knees were not yet able to hold you up to your ever-evolving progress for articulating words. The IEP meetings filled with phrases like "He is the mayor of the school!" and "I wish we could package what he has" and "You don't have anything to worry about." The neurologist we met with after your stem-cell infusion at Duke University who said, "I can see the light in his eyes."

Perhaps you will still go to college. Among many things, you have taught us that you never can tell what the future holds, and sometimes that's a very good thing. Your capabilities are great, limited only by stereotypes, dated perceptions and inflexibility. You have become an admirable advocate for yourself. Your independence continues to flourish, even if the committee member known as your mother does get a wee bit nervous at times about that.

In making our admission decision to the School of Life, we firmly believe that you will continue to make important contributions in the upcoming years—to your family, to your school, to your community and beyond. 

You should be very proud of your accomplishments, Max. We, the committee, certainly are.

We will be in touch about next steps. (Although they do not include moving to Los Angeles.)

With love and great respect,

The School of Life Office of Admissions  
(Mommy and Daddy)

Friday, April 2, 2021

The Disability Blogger Weekend Link-up is up and at 'em


What to do if you're new  

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Thursday, April 1, 2021

Max is digging '70s music and other stuff you maybe never expected about your child

Weeks ago, Dave and Max were driving around and the Electric Lights Orchestra song Livin' Thing came on. For the uninitiated, ELO was a hot '70s British band, and yes, Dave likes to drive around listening to '70s music. He sang the song out loud, and Max was hooked. 

Ever since, Max has insisted on playing the song regularly. He watches groovy YouTube videos of it. He asked his music therapy teacher to play it on her guitar so he could sing it with her. It's gotten to the point where Dave took everyone out for ice-cream a few weeks ago and when they arrived home Ben and Sabrina leaped out of the car and simultaneously screeched, "WE ARE NOT LISTENING TO THAT SONG ANYMORE!"


Dave is tickled that Max is into music that he loves. It's one really fun part about having children: introducing them to the same stuff you liked when you were young. That pained me when Max was little, because it seemed like we were all missing out. Max and Dave didn't get to play sports the way dads and other boys did. I couldn't take Max to movies or shows because of sensory overload. We couldn't play board games with him (he didn't have the attention span), give him candy (he couldn't chew it), or teach him how to climb the money bars at the park.

Eventually, things shifted, including our mindsets. Maybe there was stuff from our own childhoods that Max couldn't experience, but then, this was a kid who did not lack for interests or passions. He adored the color purple, The Wiggles, DVDs about trains and planes, this one toy that involved pop-up balls, and the list went on. He relished school, his teachers and his classmates. He found his own unique joys, from going through car washes to visiting fire stations.  

The other shift that happened was: Max. As his physical and cognitive skills evolved, his world opened up. He learned to ride an adaptive bicycle and cruised around our neighborhood like any kid. He played on an adaptive softball team. He had adaptive bowling birthday parties. His sensory issues dwindled and he grew to love going to movies and shows. Traveling, too, one of my longtime passions. When we went to London two years ago, Max helped me pick out places to visit and of course it didn't turn out as planned but it was still a blast. 

In recent years, he and Dave have become the best of eating buddies, eager to experience new restaurants together and explore new neighborhoods while they're at it. Max is a sushi eating machine, which isn't cheap but is a thrill because it's Dave's favorite food.  

Max's life hasn't been lacking because of his disabilities—it's life as he knows it, and it's pretty darn great. It just took a while for us to understand that. 

It's a livin' thing.

Monday, March 29, 2021

He is so over my parental anxiety

"Max, you know to look both ways when you cross the street, right?"

Max sat in the passenger seat and stared stonily ahead, ignoring me. At his request, I was driving him to the fire station—his favorite place in town—so he could walk home from there. He'd done it once before, in October. There's a big intersection he has to cross on the way home, and it worries me. 

"C'mon, Max, answer me. You're going to look both ways, right?"

Max stared at me.

"Si!" he said.

I burst out laughing, and so did he.

"OK, Max, just be really careful about looking for cars when you cross that big street.

He didn't answer. 

Letting your adult child with disabilities grow into independence is partly a matter of their maturity, and partly a matter of your own. Max is sensible. He knows his way around the neighborhood. In fact, neighbors look out for him. Still, parental anxiety gets the best of me, especially my concern that he could trip and fall. Max is steady on his feet but it happens on occasion, when pavement is uneven.

"Hey, Max, what's your address?

 Max gave me another look.

"Los Angeles!" he said.

Again, I cracked up. He was mocking my anxiety, and really, who could blame him? 

I talked a little bit more about how cars sometimes speed through that intersection as he pretended not to listen, though I knew he was. I let him out of the car at the fire station, waved goodbye, took off and watched him IN my rearview mirror until I couldn't see him anymore.

A half hour went by. Forty-five minutes. I called his Apple watch; no response. I was about to get in the car when he showed up at our doorstep. He'd taken the long way home.

"Mommy! I want to take another walk!" he said after he used the bathroom.

"OK, see you soon," I said. 

I watched him head down our front steps, and I tried to let go.

Friday, March 26, 2021

The Disability Blogger Weekend Link-up: where did the week go?!


What to do if you're new  

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Saturday, March 20, 2021

The Disability Blogger Weekend Link-up—spring-is-here edition


What to do if you're new  

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Wednesday, March 17, 2021

The new normal and why we'll handle it just fine

I spotted crocus poking out of the ground in our front yard this weekend, and I felt even more excited than usual to see them. Over the past year, I have been thrilled by the familiar and regular parts of life:walks at sunset, marshmallow pie at Thanksgiving, Halloween costumes, apple picking in the fall, dunks in the pool in summer. All still the same, despite the pandemic. 

I've craved normal, as we all have. I can't wait for a return to full school days, hanging with friends and family, hugging friends and family, vacations...and just roaming the aisles of Trader Joe's. With the vaccine making the rounds, normal is on the horizon. At the same time, I keep wondering just what a return to normal will feel like.  

Last weekend we went out to dinner for the first time in forever and as we drove home in the dark it seemed as if we were out on an adventure instead of cruising down the same old highway we've traveled for 18 years. It was both weird and wonderful. This week, I stepped inside a library for the first time in a year, took in the plexiglass partitions and the markers set up on the floor to keep people feet six feet apart and marveled that it hadn't felt like 12 months had passed. Weird and wonderful. 

My friend Wendy and I have been talking about the baby steps we'll take to ease back into public life—a trip to the store here, a meet-up with someone there. A lot of us have some form of pandemic PTSD. Those of us who have been quarantining will need to convince ourselves that it's OK to emerge from our cocoons, safety measures in place. While I'm not thrilled about wearing a mask indefinitely or avoiding parties and large gatherings, that's what it's going to take to keep protecting ourselves and others from Covid-19. And any state that says otherwise is defying the guidance issued by the Centers for Disease Control and Prevention, and putting its citizens at risk. 

Even as all this whirls around my mind, I reassure myself that as the parent of a child with special needs, I have experience in adapting to a new normal. Life after Max was born was anxiety-provoking, as things can be when you don't know what to expect. Nothing felt secure or certain. Nothing felt like it "should." But as time passed, I adjusted. Letting go of long-held perceptions let me accept reality—and appreciate and enjoy my boy for who he was. Not what I expected, not what I'd been used to, but: a new kind of normal. His normal. Our normal. 

This time around is a whole other experience, obviously, but there will be a similar shifting of gears and acceptance of a new normal. While parents of children with disabilities have had to contend with extra struggles during the pandemic, I think we are well equipped for re-eentry. Because as we are well aware, even if life as we once knew it now feels different, it can still be great. 

Monday, March 15, 2021

Distraction is the answer to parent sanity

Since Max was a kid, he's had varying passions—spaghetti, the color purple, Lightning McQueen, car washes, firefighters. Los Angeles is his most recent one, and we're going on a few years now. He is hell bent on moving there, as he reminds us often. And by often I mean every hour on the hour. He'll tell us that, he'll text it, he'll stand in our entry and weep because it's chilly outside and it's 80 degrees and L.A., as has happened recently. 

Max is old enough and bright enough to understand reason. But choosing to accept reason, well, not so much. He wants what he wants. (Who doesn't?!) And he is very, very stubborn. And he perseverates. Over the years, we have found that extended discussions involving said fantasies are the easiest way to keep him calm. The thing is, Max is 18 years old and I don't think it's fair or right to tell him that yes, he is definitely going to move to Los Angeles, what he'd like to hear. 

I have found ways around this by saying things like, "Oh, yes, I totally get wanting to move to where it is warm all the time!" and "You never know, someday you could live in Los Angeles!" I have also found that when Max keeps repeating "Los Angeles is my home," it helps to shift the focus of the discussion. It gets really tiring to keep talking about Los Angeles. No offense, Los Angeles. 

"Ohhh, yes, Los Angeles has great steak restaurants! What do you want for dinner tonight? Maybe we can grill steak!"  

"Los Angeles is great! It's fun to travel and I miss it. You know, I want to go to Hawaii when we are traveling again. Would you like to go to Hawaii? It's warm there!" 

"Los Angeles is nice. I think I'll plant some nice flowers in a few weeks, when it's warm. Max, spring is coming up! Do you know what day it is?" 

We all deserve our fantasies. We also all deserve some peace.

Distraction has come in handy for all my children over the years, but continues to be the most helpful way of managing Max's tendencies to perseverate. We got into a whole other topic the other day when we ended up discussing middle names over dinner. He asked about Benjamin's (Spencer). And he got it into his head that Ben's middle name is better than his (Grant). 

"I want a new name!" he announced. 

"I don't think you could have the same one as Ben," I said.

"I CAN!" he announced. 

I guess technically, he could. 

"So would you like your new name to be?" I asked.

"Fireman Max Spencer," he said. 

I pointed out that we already referred to him as Fireman Max. And then, I asked if he wanted to bring some treats by to our local fire department for Easter.

Distraction for the win. 

Friday, March 12, 2021

The Disability Blogger Weekend Link-up: Better late than never!


What to do if you're new  

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Monday, March 8, 2021

Tween TV shows as speech therapy, for the win

My children have used up their lifetime allocation of screen time this past year, and I've chosen not to feel guilty about this. As it turns out, it seems to have done Max some good. 

Lately, I've been noticing him using more everyday expressions like "no way!" and "I'm bored" and "that's cool" and "you got it" and "you're the best." The other week, I went into my office in New York City just for the day and when Max texted to see where I was, I sent him a video. (He visited once and loved it.)

"You are kidding me," he responded. 

I had to smile; I'd never heard him use those words before. At first, I wondered where he'd learned the phrase, as it's not something Dave or I tend to say. Then this weekend, I was in the basement, aka the Max Cave. He can often be found down there and he sleeps there, too, his own private getaway. Victorious was on, his favorite show second only to Jessie.

As I folded laundry, I listened to the dialogue. And it dawned on me: Max has been picking up vernacular from tween shows. And anything that will help him better fit into a world that views people with intellectual disability as so very different is OK by me—it's another form of speech therapy! Max doesn't have friends from whom he can absorb conversational speech (and, er, attitude).

That said, Max has a Max-ism that I adore: "very so good." As in, "Los Angeles is very so good" and "that ice-cream is very so good." And when Max is excited about something, he has a unique way of pumping his fist in the air and shouting "YES YES YES!" While I'm glad for him to use common expressions, I'm all for Max being Max. He does not sound like most other people when talks–he speaks Max. And that is very so good, too. 

Friday, March 5, 2021

The Disability Blogger Weekend Link-up is good to go


What to do if you're new  

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Monday, March 1, 2021

Best back-to-school day ever

Max returned to in-person learning at school this morning after a year of being out. He had some of the usual back-to-school excitement, and some hesitation. Me, I had All The Feelings.

Max has always enjoyed school. He's been doing fine with virtual learning, and his school did a great job of putting together work skill kits he could practice with at home. But now that he's fully vaccinated, Dave and I felt it was time for him to be back socializing with classmates, getting in-person physical, occupational and speech therapy and doing his work skills live. There would only be seven other students in the class. We were OK with the bus, too—there would be only one other student on it. 

Max started  expressing some reservations this past week. Yesterday afternoon, he burst into tears. 

"It's not safe!" he insisted, and my heart sunk. 

Transitions have never been easy for him. Like all of us, Max had settled into a routine at home. And so, after months and months of making it clear to Max that we were quarantining to stay safe, we had to convince him that going to school was safe. We spoke about how the vaccine would protect him from getting very sick, and that he'd be wearing a mask to protect himself and so would everyone else at school. We told him that the awesome bus driver he'd had for the last several years would be back, and that there would be only one other student on the bus. We reminded him that he would finally get to meet his amazing teacher, see his old friends and make new ones. 

We had to convince ourselves, too. I've read up on the research on  the low risk of Covid transmission in schools. Anecdotally, I have heard the same from friends who have kept their kids in school. Still, it was a big mind-shift for us all. We have no regrets about keeping Max home since September, even though his school building was open—he is high risk for complications. But the vaccine changes everything. Sabrina is going back to school this week. So is Ben.

Max listened to us. He calmed down. Then he smiled and said, "Suit!" 

He was joking that he wanted to wear a suit for his first day of school. 

We prepared for his return by staying up too late (Max) and doing all of the forms at the very last minute (me) because: some things never change. Max picked out an outfit—his favorite Los Angeles sweatshirt and navy blue sweatpants. And we did his homework together, a video recording of how he spent his weekend. Max enjoyed reeling off the foods he'd eaten (sushi, ice-cream, spinach pie).

When my children have returned to school in September, it's always felt like a fresh start and a relief. Today, I felt like a whole other kind of fresh start and relief: We have made it through a full year of at-home learning (and at-home everything). Max going to school was the first normal thing that's happened to our family. 

After Max had breakfast this morning, he got out the plastic stand that he uses to prop up his iPad and put it on the kitchen table. It was a total "Maybe I can stay home?" play. But then, once his jacket was on, he kept looking out the window for the school bus. Never in my life have I been so happy to see that bus pulling up to our home. It was as if it had never gone away. 

We walked Max down the steps and he headed over to the bus with a huge grin. I chatted with his driver for a bit, so thrilled to see her, and said hi to the new aide. Then Dave and I stood there and watched it head off. 

"It's hard to believe it's been a year," he said.

"I know," I said.

The kitchen table looked bare without Max sitting there. The kitchen felt so quiet without listening to him talk with his teacher. 

It felt weird.

And all kinds of wonderful. 

Friday, February 26, 2021

The Disability Blogger Weekend Link-up is up and at 'em


What to do if you're new  

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Like this: And then he decided he wants to drive

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Thursday, February 25, 2021

Very impressive use of emoji

I can say, with certainty, that Max learning how to use emoji was never on my wish list. It hadn't even crossed my mind that it was something he didn't know how to do or think to do. I am long past worrying about the no-can-dos and obsessing about the when-can-dos. But Max keeps right on showing us that there are no limits on progress. And as always, even the little things mean a lot. 

Perhaps you heard me cracking up the other day? I was in my attic, working, when I got a text from Max. He and Dave had been out on an errand, and he informed me that he couldn't do PT because he had to eat lunch. Eating out with Dave (or, rather, going to drive-thrus or doing takeout) is one of Max's favorite activities.

Back in September, we discovered that Max had taken it upon himself to cancel a session with his school physical therapist because he wanted to go to the park. This was definitely a new level of independence, though we had a talk about it. Since then, however, he's done his best to weasel out of sessions several times, typically by texting me.


I was floored by the emoji—I'd never seen him use one before. Smartypants had picked them up from texting with me, Dave and family. (Shout out to Dave's friends Jeff and Big Ben, his fave texting buddies.)

I gave him a brief response: "No we can't cancel" and returned to work.

Ten minutes later, another text arrived:

And I know, it was so wrong and I have all the respect and admiration for his therapists, but I could not stop laughing. 

Max seemed to have mastered emoji. Not only had he chosen a sad face, it was the one that had that "my bad" connotation. And juxtaposed with that was his victorious "ha ha." Also inappropriate. But. 

This was less funny when I later found out that he had not actually emailed his PT, so we had a long discussion about his therapists, how great they are and how they count on him to show up—and why he needs to count on them, too. 

But:




Monday, February 22, 2021

And then he decided he wants to drive

As of a couple of years ago, Max wasn't interested in learning how to drive. As of late, oh yes, he does. There is definitely some sibling rivalry happening, because Sabrina is about to start taking driving lessons. But this is also a part of Max's burgeoning independence and perhaps he is ever so slightly tired of us after a year of pandemic quarantining and just wants his freedom. Can't blame him there.

Dave has been doing this slightly unnerving thing of letting Max help steer, and I am the cliched backseat driver. Disclaimer: Do not try this at home.

I was talking about Max and driving with my sister-in-law yesterday, who had the excellent idea of seeing whether we could rent one of those driver ed cars. I started googling and discovered the existence of certified driver rehabilitation specialists, who figure out solutions for drivers with disabilities. I searched the member directory at The Association for Driver Rehabilitation Specialists, found a few at a local rehab center (they're all occupational therapists) and reached out to one I looked up on LinkedIn because she looked friendly and because my Spidey senses said she might be game to figure out a lesson plan for Max and how he can get a learner's permit. 

I mean, Max started driving bumper cars on his own back in 2014 and he's good at it. That's gotta mean something, right?!

Yeah, I miss those cheeks too. 

I haven't yet discovered much research online. An article on developmental disabilities and drivers from Children's Hospital in Philadelphia was pretty discouraging (if realistic), noting that everything from reaction times to judgment calls can pose challenges for young adults with neurodevelopmental differences. One study that examined 609 youth with autism in New Jersey found that fewer than one third of them got a driver's license, versus 83% of other adolescents. Again, not surprising. 

But then, studies don't tell you what's possible when you have a determined son and an equally determined set of parents. I have a feeling that way or another, Max will be hitting the road. 

Friday, February 19, 2021

The Disability Blogger Weekend Link-up is here for you, once again


What to do if you're new  

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Like this: What I'll never forget about the pandemic (in a good way)

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Tuesday, February 16, 2021

What I'll never forget about the pandemic (in a good way)


"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

Lately I've been thinking about Maya Angelou's famous words, and how they relate to the pandemic. While the tragedy of it will never be forgotten, I am hoping that the anxiety, monotony and yearning for a return to some sort of normal are not what will stick with me or the kids. I am also hoping to repress the fact that we let the kids have eleventy billion hours of screen time. But I am betting that the ways in which our family, friends, neighbors and even strangers have made all of us feel good will be what we remember, in years to come. 

What's on my list:

• The boys' bliss during their weekend sleepover parties with Dave in our basement, aka their getaways.

• The spirit boosts of zooming with people at work and friends on Saturday nights. Shout out to my pals Hedy, Wendy, Betsy and Paola even if I don't someday recall what, exactly, we spoke about. Although maybe I won't forget just how much we obsessed over wiping down our groceries, but already that seems a long time ago.

• How amazing it felt to cut my mother's hair. Mom being Mom, she told me it was her best one ever.

• Max Zoom dancing with his class.



• Neighbors coming to each others' rescue last spring by buying groceries and food when it was impossible to get delivery slots. And that one time a neighbor who knew I loved Trader Joe's alstroemeria (they come in gorgeous colors and last for two weeks) bought me some.

• What an awesome big sister Sabrina has been to Ben.


• The extreme dedication of the teachers and therapists as my children learned virtually, their creativity at keeping them engaged and how lucky I felt to have them in our lives. 


• The Zooms our Girl Scout troop organized with children and teens with disabilities and how much fun everyone had.

• My sister's regular are-you-OK text check-ins.

• Dave, aka DaveDash, walking up the stairs to bring me lunch as I sat in our attic and worked. 

• My gratitude for the mask and sanitizing-product help I've gotten—from our forever thoughtful friend Mike; from the woman I connected with in a local Facebook group who kindly made our family masks; from the lady who made me one out of a treasured old Lilly Pulitzer dress; from the stranger who gave me Lysol wipes at the beginning of the pandemic.

• Max's glee about his Saturday morning yoga sessions with my sister-in-law, Em and how he looked forward to them all week.

• The boys sitting in my in-laws' garage and getting haircuts.

• That one time the Target delivery guy told me the iced coffee I ordered was not available and when I informed him that iced coffee is to me like blood is to vampires, tracked down some in the back of the store.

• The people who showed up on our front porch: Max's therapists; my friend Laura, an event planner who helped with Max's bar mitzvah and Sabrina's bat mitzvah and who brought dahlias for me when I commented on how pretty the ones she posted on Insta were (I burst into tears); the Friendship Circle, dropping off care packages and activities.

• Ben's October pandemic birthday party, Max's December pandemic birthday party with classmates, Sabrina's January pandemic Sweet 16. We all needed those celebrations, and the reminder that life goes on.



Try putting your own list together. I promise, it'll make you feel good.

Friday, February 12, 2021

The Disability Blogger Weekend Link-up is hosting your posts


What to do if you're new  

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Like this: Love That Max: Getting a Covid vaccine shouldn't feel like winning the lottery, but it does

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Thursday, February 11, 2021

Getting a Covid vaccine shouldn't feel like winning the lottery, but it does

I'm not sure what's happening in your area but in ours, getting a vaccine appointment feels like winning the lottery. Max finally had his turn. He was seriously excited, especially because he knows that once he's fully vaccinated he can return to school. 

At the start of the pandemic, doctors told us that Max wasn't at high-risk for complications from Covid-19, mainly since he did hadn't had a previous illness that compromised his lungs. The main concern for him was the lack of in-person therapy. Still, I worried—there was so much unknown about the coronavirus. As more information emerged, it became alarmingly clear that Max was at high risk. People with cerebral palsy have difficulty with muscle movement, which meant that there could come a point where breathing—which involves muscles of the diaphragm and lungs—could become acutely difficult for him. (This article from the Cerebral Palsy Alliance has good information on the risk for people with CP.) It also emerged that blood clots were a side effect of Covid-19, and Max has a condition that puts him at more risk for them. 

News also came out that people with intellectual disability were three times more likely to die of complications from the coronavirus, although the key reasons—people with ID were more likely to have chronic health conditions, live in group homes, be employed in essential services, and rely on public transportation—did not apply to Max. 

There are so many tragedies in this pandemic: the 2.35 million deaths worldwide and counting; the ongoing complications people, aka those poor long haulers, are experiencing; the financial devastation happening among the most needy people in our country; the social isolation our children are experiencing, especially acute for children and teens with special needs who were already isolated to start with; the toll this has taken on parents; the impact on small businesses. It's tragic, too, that as the push was made to come up with vaccines, test them, approve them and produce them, systems weren't simultaneously being put in place to dole them out. Instead, it's like the Wild West out there, with so many people unclear on how to get vaccines or unable to get access to them.

Getting a lifesaving vaccine shouldn't feel like winning the lottery, but right now, it does. 

We registered Max on as many sites within our state as we could—some didn't specify that you had to be local—and got fortunate. Max had some arm numbness, nothing more. (In case you're wondering, they don't automatically ask guys to take off their shirts but Max insisted on wearing his beloved over-washed, too-tight Los Angeles sweatshirt and the nurse couldn't get to his upper arm so off it came.) Last week, my sister got lucky on a drugstore website at midnight and scored a vaccine for Mom.  

I am wishing you every one of you luck with vaccinating the high-risk and elderly members of your family, and hoping beyond hope that systems improve. 



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