Friday, April 30, 2021

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


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).

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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


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).

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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


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: Yet another dubious milestone. Yay?

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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!


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).

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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  

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: He is so over my parental anxiety 

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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.



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