Friday, April 29, 2016

The Special Needs Blogger Weekend Link-up: Share a post!


What to do if you're new here

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

Like this: Love That Max: Max's bar mitzvah, in photos

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, April 28, 2016

How far should you push your child with special needs?


Sabrina and I went to Riverdance over the weekend. Dave and I saw it years ago, and loved it. The dancing was just as jaw-dropping, but I could have done without the song interludes which made my always-busy mind wander. As I sat there in the dark, I wondered whether we should be doing more to encourage Max to see shows.

I'd offered to bring him when I bought the tickets months ago, and he'd said no. I didn't push him, because it's been our experience that unless it is something he is already into—like the Disney Junior Live shows we've taken him to in recent years—there is a good chance he will bolt out of there. (I have yet to find a performance centered around fire trucks/firefighters.) But I felt guilty that he wasn't there with us.

When I was little, my parents often pushed me and my sister to see and do stuff that we wouldn't have necessarily wanted to—museum exhibits, dances at a Native American reservation, the works. True, Max has sensory issues that make him sensitive to loud noises. And he is a creature of habit who sometimes shuns stuff he is not familiar with. Still, it's parents' job to introduce their children to the wonders of this world. "Expose him to as many new experiences as possible," the pediatric neurologist told us when Max was a baby.

I haven't exactly been a cruise director for the kids these last few months since Ben and the bar mitzvah have been somewhat consuming, but as I sat there in Riverdance I vowed to find some cool show to take Max to—likely one of the autism-friendly performances at a local theater.

This week I got an email from the staffer at Max's school who coordinates participation in the local Special Olympics Track and Field event. Every year, I ask Max if he wants to go and every year, he says—and I quote—"NO!"

Last night, I asked him if he wanted to be in a race. Even if he turned me down, I was thinking of driving him over to check it out.

He put his hand up to his head and said, "Hmmmm....." He does that lately when he's pondering something, and it always makes me smile. "I'm thinking," he informed me. And then he said: "YES!"

What?!

"Are you sure?" I said, pressing my luck.

"Yes!" he said.

I wanted to make sure he was clear on what would be happening.

"Are you going to go fast or slow at the race?" I tested him.

"Slow!" he said.

"Are you worried you'll fall?" I asked.

"Yes," he said.

He had a point. He's pretty steady on his feet, but he trips on occasion. I told him I'd buy some knee pads, and that way he could go fast if he wanted to.

Then I asked him to do a little practice run around the kitchen, just so he knew what he was in for, and he did, laughing.

"You're going to have fun?" I asked.

"Yes!" he said.

Repeated encouragement can work. Forcing things: not so much. And so, next weekend I will be taking Max to participate in his very first Special Olympics event. Maybe he'll bow out at the last minute, but the first step is getting him to agree to go in the first place, and he has.

And he didn't even mention wearing his Fireman Max hat.

Wednesday, April 27, 2016

Max's bar mitzvah, in photos



The entry sign, complete with Max's favorite fire truck

Hello, Ben? Ben? Bennnnnnnnnn? OK, let's move on!

Max got Ben to smile by making silly noises.

A quiet moment before people entered the sanctuary. A friend of a friend crocheted Max the kippah; it has his Hebrew name, melech, which means "king."

The rabbi gives Max his tallit

Max sings Uri, Uri: "Cause you've got the music in your soul, this world needs to hear your song."

My mom, saying a blessing

Dave and I gave Max a parent blessing. This is how it went:

Dave: May God help you continue to be the wonderful person you already are.
Ellen: Bright and curious, charming and funny, perceptive and sensitive, caring and loyal. You also have the wonderful ability to say "I love you." Hang onto that one especially!
Dave: May your enthusiasm for learning continue throughout your life, and bring you great joy and fulfillment. You are a smart guy!
Ellen: May people always see your abilities.
Dave: May your Judaism continue to be discovered and explored.
Ellen: May you have companions throughout life who love and appreciate you for who you are, and who are there for you.
Dave: May you do all the things you want to do and be successful, as you define success.
Ellen: May you continue to have the abundant joy that makes it clear to you and those who know you that every day in life is a gift.
Ellen & Dave: Max, thank you for being such a bright light in our lives. We're proud of you, and we love you. Mazel tov.

Max and Sabrina sing "Adon Olam" (Master of the Universe) to conclude the ceremony.

At the cocktail hour, sitting with friends from school. Yes, that's a giant piña colada in front of Max.

 Escort cards

 The party room

The centerpieces, complete with lit up fire trucks

When I first started planning the bar mitzvah a year ago, I wondered if Max would want to make an entrance into the party on his own. Well, he insisted on it.

 
This is the boy who used to tell me he didn't want to be lifted up on a chair during the hora.

A mix of friends and family lit the candles on the cake; these are my best friends, Wendy and Hedy, and Dave's—Brian, Leigh, Jeff and his son, Enzo. 

 My sis, Judy; her husband, Steve; and their daughter, Margo

Max wanted to blow out his candle together.

He held the mic for our speech.

 Dancing with one of his good friends from school

My friend Wendy made this amazing box for cards people brought.

 Mom/son dance to "Just The Way You Are"

 Candy bar! Designed by my friend Laura from Party Cake, Party Cake.

 One of the many beautiful messages people left in Max's sign-in book


Photos by Joy Yagid Photography; candy bar: Stephanie Ripps

Tuesday, April 26, 2016

A little friendly competition at our house


Last week, Ben started solids. Max had suggested sushi, but we went with oatmeal.

Sabrina begged to be the one to break Ben in, and so she had the honor. The four of us gathered round the kitchen table at around 7 a.m. to watch Ben's reaction. Which was, basically, "WHAT ARE YOU PEOPLE DOING TO ME?" We'd put the food in, he'd spit it out. Typical first meal.


Given that he is mine and Dave's child and we are big fans of eating, we figured it was just a matter of time before Ben liked food. As in, by his second meal.

That evening, Max demanded to be the one to feed him. Sabrina tried to claim it was better if she did it since the baby was "used" to her feeding him, but Max stood his ground.

He mixed up a batch of oatmeal.











He did his best to coax it into Ben's mouth. At first, Ben was still dubious.

"Eat!" Max encouraged him.


And so it went, Max cheerfully trying to convince Ben how delish oatmeal is (it's long been Max's go-to breakfast).

Soon enough, Ben was opening his mouth for more. Max shot Sabrina a "SEE?! I GOT HIM TO EAT!" look of victory.

I have sweet memories of me and Dave feeding Max and Sabrina for the first time. I so loved it that my big kids got to do that for Ben.

Now at breakfast and dinner (Ben's not yet doing lunch), the kids both want to feed him.

I sure hope they start fighting, soon, over who gets to organize the baby's drawers and dust his room.


Monday, April 25, 2016

A Showtime comedy mocks disability: One seriously offensive video


Comedians being politically incorrect about ethnic groups, their families and people with intellectual disability (ID) is nothing new. Over the years, Tracy MorganMargaret Cho and others have joked about "retards." Now another comedian's doing the same, and taking offensive to a whole new low.

I got an email over the weekend from Family Member, a group I'm part of that seeks to help people with ID get fair representation in the media. It seems like a comedian most of us had never heard of has a show—Gary Owen: I Agree With Myself—that's airing on Showtime tomorrow. The channel touts him as a "fearless" and "happy-go-lucky" comedian who "flips every accepted politically correct approach to family, race, gender and politics." His comedy special is "hilarious."

Check out this clip and tell me if you find it "hilarious"—or repulsive and just plain wrong.



Why is it "hilarious" to refer to someone with intellectual disability as "retarded"—a word that demeans an entire population of people?

Why is it "hilarious" to mimic people with intellectual disability?

Why is it "hilarious" to make fun of athletes in the Special Olympics?

Why is it "hilarious" to use people with ID as comedy material, period?

People might argue that Owen is equal-opportunity offensive. Thing is, he's not equal-opportunity offensive. He may freely toss around the word "retarded"—a word that's considered a slur—but he knows better than to say "nigger" (black people comprise a large part of his fan base, according to this Vibe article, and he is married to a black woman). That same piece noted that he once turned down an online gig because the character repeatedly said the N-word. Meanwhile, Owen has included his cousin with ID (assuming she actually exists) in his routine for years.

Owen seems to not consider his cousin much of a person; his preferred name for her is "retarded," although he is obviously degrading to people with ID on a whole lot of levels. As I've said before, this isn't about censorship. This is about the way people discuss—and treat—those with intellectual disability. There are approximately eleventy billion other things to joke about in a comedy skit that do not involve mocking people with intellectual disability.

As disturbing as it is to watch this clip, it's also unnerving to see the audience laugh at Owen. I cringed when the cameras panned to people cracking up. Clearly, we have a long ways to go in terms of getting people to treat those with intellectual disability like equal human beings. Skits like this spread the most loathsome ideas about people with ID.

If you love someone with ID, as I do, then you take this all of this personally. If you don't have family or friends with ID, I hope you still care about making the world more welcoming toward people with intellectual disability, and encouraging your children to do the same. Help them understand that everyone has a variety of abilities, and that people walk, talk and behave in many ways and there is no one "right" way. If your kid ever uses the word "retard," use it as a a jumping-off point for a conversation about respect.

Meanwhile, feel free to tweet at @Showtime and include parent company @CBS, or leave a message on Showtime's Facebook page. Let them know that people with intellectual disability don't deserve to be the butt of anyone's joke, and ask them and Gary Owen to apologize to our community. 

5/26 UPDATE 

Special Olympics has put up a change.org petition asking Showtime to cut this segment of the so-called "comedy" special. Sign it here

5/26 UPDATE #2

This afternoon, Showtime removed the program from the evening lineup. Kudos for that to the channel—although the segment is still available on Showtime online. 

6/1 UPDATE

After repeatedly refusing to back down, Owens finally agreed to have the skit removed from the special

More on this:

Would you call my child a retard?

Do you get why this word hurts so much?

If you ask people not to use the word retard

So, what do you say when someone uses the word "retard"?

20 reasons to respect my child with special needs

Image: Screen grab/I Agree With Myself

Friday, April 22, 2016

The Special Needs Blogger Weekend Link-up: Spring fever edition


What to do if you're new here

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

Like this: The supermarket standoff: On refusing to do stuff for your kid

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, April 21, 2016

There are worse things to be called than cute


"You're cute!" the guy said to Max. Yesterday afternoon, I had a handyman at our house checking out some work on the deck that needed to get done, and Max had just informed him that his name was "Fireman Max."

Cute.

Well, yes, Max is cute. At 13 years old, he seems younger than his age, a running theme of his life. When he was a little kid, I felt glad for this. If people thought he was younger than he actually was, I reasoned, then they wouldn't be wondering why he wasn't yet walking or talking. Children wouldn't make fun of him.

As Max got older, his disabilities became more apparent. Children stared. Adults did, too. Still, he was cute. Not just in looks, but in his sunny disposition, too. I think that cuteness of his has helped break down the discomfort and awkwardness that some people feel around children with special needs.

But now, he's a teen who's cute in part because he has mannerisms that are younger than his years, like wearing a fire truck hat and telling people that his name is Fireman Max. He's also on the shorter side, which also contributes to his youthful appearance, along with the nighttime anti-wrinkle cream he uses. (Kid-ding.)

This is all to say that I've been wondering if it's still cool for people to refer to him as cute (as in, people who are not girls his age). Maybe I'm being overly sensitive because even if Max doesn't do things that other kids his age do, he has plenty of abilities and I want others to see that. People who know Max are aware of just how far he has come and how much he has matured; I hope that others who meet him see a young man who happens to have some childish habits. As always, I ache for people to see beyond the disabilities.

I mean, Max will always be cute to me because he'll always be my baby; same goes for Sabrina and Ben. And there are worse names to be called. Now that I am middle-aged, and still getting told on occasion that I'm cute, I have decided that it sure beats "You old hag."

Really, though, there is only one person whose opinion on this counts. 

"Max, are you cute?" I asked him as we stood on the deck.

"No!" he said. "Handsome!"

The guy didn't understand that Max had said "handsome" so I translated, and he laughed.

"Yes, handsome! You're very handsome," he agreed.

Max grinned. He looked both handsome and cute, but I wasn't going to mention it.

Wednesday, April 20, 2016

The supermarket standoff: On refusing to do stuff for your kids


As independent as Max is getting lately, he's stubborn about using both hands at once. Since his right hand is weaker, it's easier for him to try to do things with the left one. Make that try to do everything with the left one. We tease him about how he forgets that he has two hands, but it's no joke watching him struggle to do stuff single-handedly. The refrain me and other parents of children with cerebral palsy regularly chant: "Two hands! Two hands!"

So then Max and I were grocery shopping last week, and at the checkout counter he was loading items onto the conveyor belt. For once, nobody was behind us so I let Max handle it alone. Only he
kept picking stuff up with one hand, dropping it, trying again and repeat repeat repeat.

"Two hands! Two hands!" I kept saying, to no avail.

"Firemen always have to use two hands when they work!" I noted. He ignored me.

Then Max attempted to pick up a carton of milk with just his left hand, a truly tricky proposition. His hand doesn't quite open up all the way and so he couldn't fully grasp the carton.

"Max, you can't pick that up with one hand, you have to use two," I said.

"No!" proclaimed Max, and proceeded to keep trying.

"Max!" I said, more wearily this time, "there is no way you can pick that up with one hand."

He knew I was right. And so, he abandoned the milk carton and turned his attention to a package of Mrs. T's Pierogies, one of his fave foods. He almost succeeded in lifting it with one hand but then....


He looked at me, expectantly.

"I'm not picking it up," I said.

He gave a little foot stomp.

"You dropped it, you pick it up," I said.

Meanwhile, the cashier was watching us and I'm sure wondering why the heck I was refusing to help him.

"Arrrrrgh!" said Max.

I stared him down.

Finally, he used two hands to pick up the package and place it on the conveyor belt.

#win

Then he returned to using one hand for everything else.

#sigh

This time, I didn't say a word as he struggled. At some point, Max will have to accept that even though his left hand doesn't operate quite as well as the right, it really can come in handy.

I eventually pitched in with the heavier stuff. When everything was all rung up, Max and I swiped the credit card hand over hand and I let him sign. He went with his initials, and the legibility was pretty impressive. You can guess what the "FM" stands for: Fireman Max, of course.

Tuesday, April 19, 2016

The thrills of spying on your kid at school


One of the great delights of parenthood is spying on your child at school. This is because, as every parent knows, children tend to act like very different people there.

It's fascinating to see how angelic they are, giving you hope that someday they might act like that at home, too. It's fun to see how they interact with peers. It's inspiring (and a little maddening) to see them cleaning up after themselves with no nagging necessary. And with Max, we've gotten good intelligence on how independent he can be.

My mom used to serve lunch at my school when I was a kid, likely so she could spy. Sometimes I'd get embarrassed when she fawned over me, but mostly I was psyched because she would get me extra slices of pizza. Sabrina still appreciates my serving lunch at her school, even if I do hound her about eating a better balanced meal.  If I position myself in the right place, I can peer around a column and observe her chatting with her friends until one of her friends notices and rats me out.

Sabrina's teachers regularly comment on what a lovely girl she is. I even recently got an unsolicited email from a teacher saying what a pleasure it is to have Sabrina in her class. I was going to let Sabrina know, except she's been too busy wailing about not having enough "good" spring clothes to wear. "Do you behave like this at school?" I ask her, rhetorically. I'd similarly be glad to let Max know what a sweet guy his teacher thinks he is, except he growls at me when I ask him to turn off the fire truck YouTube videos.

Parents don't serve lunch at Max's school. But years ago, when Dave and I were still spoon-feeding him, I stopped by his classroom during lunchtime and was amazed to see him feeding himself. Same thing happened with toilet training; he was doing it at school well before he manned up at home. Teachers are familiar with the phenomenon, which boils down to kids getting codependent on parents who enable them. Guilty as charged.

Evidently, the independence effect holds up when Max is in other schools, because we went to Sabrina's for an event last week and before we knew it Max had taken off with Ben to give him a tour. (For the record, Ben behaves the same at school as he does at home: he smiles, he spits up and he refuses to nap.)

Last week was also one of the best school spy moments of all time. Dave had the honor. We'd forgotten to pack Max's iPad in his backpack in the morning, so Dave drove it over. He got there before Max's bus arrived and watched as Max disembarked. Then he watched Max greet everyone in his path. He smiled. He said "Hi!" He gave high-fives. "It was like he was the mayor!" Dave told me. I made him re-enact the scene, and we laughed and relished the pleasures of school spying.

Monday, April 18, 2016

Those flashes of gratitude for your child's accomplishments


Max was on spring break last week, and one day he invited me and Ben to his favorite diner for lunch. (On me.)

Max ordered mac 'n cheese, fries and chocolate milk. I watched him wolf down the pasta as Ben slept (yes, the baby actually napped). I cut the fries into small pieces and helped Max shake on a massive amount of ketchup. I smiled as he carefully picked up the cup of chocolate milk with both hands and drank it.

I never take for granted the accomplishments that Max has worked hard to achieve, or that have naturally evolved, but there are times when I get these major surges of gratitude for them. This has been happening more frequently lately when I'm caring for Ben and often have no extra helping hands.

As Max chowed, I felt seriously glad that he can feed himself. Holding a cup on his own is a relatively recent feat, and it was awesome to see him controlling the influx of liquid without dribbling much out. 

I've also felt that flash of gratitude when I'm holding Ben and Max is walking down the stairs in front of us, on his own. And when I'm feeding Ben and Max needs to use the restroom and he just goes off and does. And when he turns knob on our back door to let me into the house when I'm carrying Ben in the car seat. And when I need a burp cloth for Ben and Max gets one. And when Max is looking out for Ben. As we were doing a stir-fry in the kitchen the other day and it got smoky, Max asked if it was OK for Ben to be around that.

I'm not only seeing Max in action. I'm also seeing the boy who used to not be able to do whatever it is, and the boy who had to practice and practice , and the boy who may have resisted doing it because he got used to Dave and me enabling him (as is especially the case with feeding). I'm seeing the whole of Max's accomplishments and his development, and I am seriously grateful. 

Friday, April 15, 2016

The Special Needs Blogger Weekend Link-up: Back by popular demand


What to do if you're new here

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

Like this: Max says it was the best bar mitzvah ever

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, April 14, 2016

8 key things I learned raising a child with autism: Tips from a psychologist


This guest post is from Anne K. Ross, the pen name for an award-winning writer and school psychologist with three decades of experience working in public schools in Northern California. Anne is the mother of two young adult sons; her oldest has Asperger’s. She is the author of the new book Beyond Rain Man, which has received rave reviews.


I’ve been a school psychologist in public elementary, middle and high schools for a little more than thirty years, but when my oldest son, Matt, was finally diagnosed at age eleven with Asperger’s, I was shocked and immediately embarrassed that I hadn’t understood that Asperger’s was part of the autism spectrum, and that the spectrum was so broad it included this thing I didn’t even know how to spell.

I quickly learned that even though Matt was smart and a good student, his tantrums, inflexibility and tactile defensiveness were all part of the syndrome. We finally understood why he could be so black-and-white and rule-bound. Why he got stuck on the way he thought things needed to be. Living with a kid with Asperger’s and working with kids with autism, I learned about the breadth of the spectrum: how no kids looked exactly the same, how it is really a genetic roll of the dice that determines what strengths and weaknesses show up in individual kids. I've also learned a few strategies over the years for helping my son—and our family—get through the rough times.

It’s tactile defensiveness, not a lack of love, that makes some kids on the spectrum resist hugs and kisses.

Matt often brushed off our embraces, preferring strong squeezes with advance notice that they were coming. Once, when I told him that we were not joining our extended family for Thanksgiving that year because they were meeting on the East Coast, Matt was relieved, but not for the reason I expected (that it was boring to have to sit and talk with relatives one only sees every other year). He set me straight: "They’ll be hugging and shaking hands and everything." He shivered with repulsion.

Sensitivity to touch causes physical discomfort and even pain. Try imagining the feeling of cutting a fingernail too short. Now imagine that feeling all over your body. A fourth-grade girl I worked with wore lots of colorful combinations of clothing that were a few years behind the current style. When I interviewed her mother, she told me she bought used clothing for her daughter because it was the only clothing soft enough for her. When her daughter was a toddler, the girl had complained one day of "bees stinging" her arms. Later that evening, when her mother pulled off her daughter’s shirt to get her ready for bed, the little girl smiled for the first time that day. "No more bees," she said.

Matt worked with an occupational therapist, who taught us a brushing and joint compression practice to help with tactile tolerance. And, with our pediatrician’s permission, we let Matt play in the snow in his long-sleeved tee shirt without a jacket. Matt still prefers shorts, but he can tolerate jeans now and he’s bought dress pants for job interviews.

There’s good reason for some kids' lack of eye contact.

Research at the Vanderbilt Brain Institute has found that children with deficits in sensory processing have trouble processing visual and auditory information at the same time. It’s been compared to watching a badly dubbed foreign movie, with the sound and video not matching up. This may explain why some kids with autism cover their ears when overwhelmed, and why some kids don’t use eye contact when listening. Instead they look elsewhere. Once my son and I were having an argument, and I was shouting about something when he started to laugh. This, of course, made me yell louder. "What are you laughing at?" I shouted. Matt smiled. "Your lips look funny right now," he said.

When he was a baby, Matt seemed to stare at the outline of our heads instead of at our faces, but by the time he was talking and gesturing, his eye contact did not look unusual. I didn’t even know he was looking at my lips sometimes. In my work, I see many autistic kids who have typical eye contact. Some have learned from their parents’ or therapists’ reminders to look at people. Some look directly at my eyes, some look at my neck and some stare hard without looking away as expected during conversations.

Routines rule.

Routines and advance warnings can alleviate anxiety about the unknown and unexpected changes. Before Matt could read, we drew pictures of our weekend schedule so he would know what to expect. Later, we moved to checklists and calendars and bought him a wristwatch. When watching TV one night, our family cracked up when the Monk character said, “I don’t have a problem with change. I just don’t like being around when it happens.” We all stared at Matt, and he laughed the loudest.

Sarcasm and other figurative language often needs to be taught.

Humor, idioms and metaphor may need to be explained and taught to kids on the spectrum. I can often tell which families use a lot of sarcasm at home because their kids are good at understanding it. At our house, we used plenty of sarcasm, and we also read to our kids all the time when they were little. Children’s books are full of silly rhymes and plays on words and we talked about double meanings and puns. The Amelia Bedelia books were a hit in our house for a time. We suspected that given her funny literal interpretation of language, she might be somewhere on the autism spectrum.

Matt’s being super literal could make me want to scream, but it could also make me laugh. This is a conversation between Matt when he was about twelve and a psychiatrist who was evaluating him for a medication trial:

Psychiatrist: Do you know your name?
Matt: Yes.
Psychiatrist: What is it?
Matt: Matt Ross.

Psychiatrist: Do you know what city you’re in?
Matt: Yes.
Pause.
Psychiatrist: What is it?
Matt: Oakland.

Psychiatrist: When’s your birthday?
Matt: March tenth.
Psychiatrist: What year?
Matt: Every year.

Don’t let your family get isolated.

For years, we felt like we were the only family with a difficult kid. Because of Matt’s tantrums and what looked like rudeness, Patty and I had no dinner parties, no barbecues, no pizza with other families. We were hiding out, waiting for the tempests to pass, hoping we’d rejoin the social world again like we did when the kids were babies and toddlers. But with a kid we hadn’t quite figured out, and our family desperate to find its way, we hunkered down in our cave, just trying to survive.

A colleague recently told me she found it embarrassing and exhausting to take her young son with autism to the park. But when she asked another mother at his special preschool if they could get their kids together, she could finally stop worrying about what other people thought. It didn’t matter what her son did, she wouldn’t be judged. She could finally relax for a minute in the park with another mother. She had begun to find her community.

Now parents can find other parents at their children’s schools, on special education parent email groups, at Meet Ups, at community support groups, on social media and at online gatherings like My Autism Team. Just knowing that we’re not alone can be comforting; sharing information with each other can be empowering.

Your expectations will change, for the better.

For years I believed my son would follow in my footsteps, attend college, get a job to support himself, have a family. Then I began to worry he would do none of those things and would instead become depressed and lonely.

A friend told me about her brother-in-law, a grown man recently diagnosed with Asperger’s. He worked as a software developer, lived alone in a high-rise condominium in a big city and competed in bicycle distance races on weekends. He did not date and had only one true friend. He spent more time with his bike than with people. “Is he depressed?” I asked my friend. I couldn’t imagine a life without a constellation of friends, associates and colleagues. My life was full of people who recharged me. I’d be lonely, and I worried my boy would be lonely. “Oh, no,” she said. “He’s perfectly content. I think he gets stressed when he has to be around too many people. If he’s ever depressed, it’s because he has to miss a bike race because his company is having a picnic.”

It was a relief when I finally realized my son would take his own path. And it might not include a prestigious college, or maybe any college, and that he might or might not marry or have children. It would be his life. And it would be fine. He was from me, but he was not me, and what made me happy did not necessarily make him happy.

In a flash, I could see my son in ten years. Not in a hospital under a suicide watch, or living in the transition program we’d checked out, but in his own place doing whatever it was he loved doing. I could see him heating up the same frozen dinner every night, and I could hear his voice over the phone when he said, “I’m fine. You worry too much.”

The autism spectrum is wide and wacky and wonderful.

Although people on the spectrum share difficulties with social interaction and communication, sensory integration, and with flexibility and regulating their emotions, no two people on the spectrum are exactly alike. This can make it difficult to diagnose autism spectrum disorders and therefore many children and adults still go undiagnosed or misdiagnosed for years instead of receiving supports or services early, when many of those do the most good. Recent research suggests that many people with autism are diagnosed with ADHD initially.

I want parents and professionals to have a better understanding of the spectrum, both the positive characteristics and the more challenging, many of which are often hidden. Children with less obvious behaviors can still have pretty significant needs.

This is important especially in schools where parents often need to advocate for their child’s individual needs. Good teachers use tons of visuals: templates, models of expected work, schedules, outlines and visual mapping to help students get organized and learn. They keep homework to a minimum because many kids on the spectrum are exhausted from the school day, and some have social skills classes and other therapies after school. Working as a true school-home team is best for kids.

See the upside.

Asperger’s and I have an uneasy, ambivalent relationship. I do not love Asperger’s, have never loved it and am pretty sure I never will love it. Asperger’s has from time to time stolen my child from me, has stretched my relationship with him to the brink of irreversible damage too many times. It has forced my son to work harder to manage almost every detail of his life, and I have resented that. At one point, I believed Matt might eventually turn his experiences into a spiffy college essay proclaiming how his Asperger’s syndrome made him tougher, more resilient and more deeply connected to us, his loved ones, because of the hardships we’d all endured. Maybe someday he will indeed feel that way, but to me now, that thesis is nothing more than a sappy movie of the week.

I anticipate my feelings will change as he grows into adulthood, because he and I can already talk about The Asperger’s as if it is something outside of him, something with control, but not total control, over him, something he is learning to battle when required, accept when prudent and finesse as necessary. He appreciates the qualities that Asperger’s may give him, like his contentment with being alone (something I discovered when I was much older) and his ability to focus intently on what is important (to him), a quality that he believes comes from his “not needing as much variety as most people.”

We can now joke that The Asperger’s is stuck on a topic, or The Asperger’s wants to trash the house, or The Asperger’s is not so good at keeping a conversation going. But more and more, I see less of The Asperger’s and more of My Son. I recognize the skills that Asperger’s gives him, and the ways he has learned to circumvent the challenges it causes him. I am finally done cleaving and have begun the process of integrating. We have all come so far.

Adapted from Beyond Rain Man: What One Psychologist Learned Raising a Son on the Autism Spectrum by Anne K. Ross; Leatherback Press.

Wednesday, April 13, 2016

What I hope people saw at Max's bar mitzvah


Although I did not take an exit poll as people left Max's bar mitzvah on Sunday, I have been wondering what people thought. Not about the ceremony (which was beautiful) or the party, because the food was great, the DJ was fun and the room looked cool with all the fire truck balloon centerpieces and big arch (I'll share photos when we get them from the photographer). I have been wondering what people thought about Max.

I know our close friends saw how far Max has come; I felt the pride being beamed at him in the sanctuary. There were also relatives and acquaintances there who have not seen Max in a very long time or who don't know him that well, and I hope they walked away from the day having seen some of these things:

I hope people saw the ability.

During the ceremony, Max sang the blessings and the song he made up in tune and with real feeling—the core of worship. He didn't do well in spite of his disability; he did well, period.

I hope people saw the confidence.

Did Max clearly articulate all the words in the songs and in his speech? Nope. He articulated them the best he could as he stood at the podium, at ease and in full command. At the end of each blessing or song, as people pumped their fists in the air and said "Woot! Woot!" instead of clapping (which Max finds too loud), he grinned the biggest grin. He knew he was killing it. As he sang about the mitzvah of making a peaceful home in his "Thank You God" song, he delivered the punchline—"I can clean my room, just kidding—ha ha ha!" with perfect comedic timing that had everyone laughing. And during the candle lighting ceremony, Max welcomed everyone who came up and lent them a hand like he'd been doing it his entire life.


I hope people saw that you can create your own traditions.

Max didn't read from the Torah, the standard for bar mitzvahs. Instead, we put together our own  ceremony, with guidance from Orlee Krass at Matan and suggestions from our rabbi and the music teacher who worked with Max. It showed his appreciation of his heritage and his good intentions, and it was as meaningful as any bar mitzvah ceremony.  

I hope people saw that Max's friendships aren't so different than others.

Max and his friends from school were out on the dance floor a lot, having a great time. Max pushed one around in her wheelchair. He and another girl he adores held hands and danced together. They played the MC's games. They laughed a lot. They enjoyed each other's company. Like any friends at any bar mitzvah.

I hope people saw that our family isn't so different than others.

Max teased Sabrina that he didn't want her in photos because: siblings. When I went up to sing a song with him during the ceremony and kept choking up, Sabrina and Dave were snickering because I'd started crying when the first guests arrived and basically hadn't stopped. During the party, we held hands and danced together. We stuffed our faces. We took silly photos at the photo booth. We lived and loved it up. Like any family at any bar mitzvah.


Tuesday, April 12, 2016

Thirteen years of one amazing boy: the video


This is the montage I put together for Max's bar mitzvah. It's basically been my life's work for the past month (hello, thirteen years of not-very-organized photos and videos), and it was more than worth it. The entire time Max watched it, I watched his face and he was so excited to see himself growing up. Of note: Bob Marley's "Three Little Birds"—as in "Don't worry about a thing, 'cause every little thing's gonna be alright"—is Max's favorite song. He and Dave sing it all the time.

Monday, April 11, 2016

Max says it was the best bar mitzvah ever


My greatest hope for Max's bar mitzvah, which took place yesterday afternoon: I wanted him to have both a fun and meaningful time. 

I got my wish. Actually, I got more than my wish.  

Max owned the ceremony. We put it together ourselves, creating our own tradition. He sang his songs and prayers beautifully, accompanied on guitar by a music teacher with whom he's been practicing for eight months. He was especially gleeful about belting out "Thank You, God"—sung to the tune of Fire Truck—because he'd made up the words. ("I love the mitzvah of helping people, I want to be a fireman when I grow up!") The refrain of "Uri, Uri" had special meaning to me: "'Cause you've got the music in your soul, this world needs to hear your song...."

When Max made his speech, first he used the speech app on his iPad to pronounce each sentence and then he articulated the words. He noted that he is good at being Jewish and doing good; that he'd done a fire safety presentation at school for his mitzvah project; and that everyone should join him in eating sushi afterward. You've gotta love a bar mitzvah speech that mentions sushi.

Max had a gigantic smile on his face the entire time, and giggled when people pumped their fists and said "Woot! Woot!"—he requested no clapping. He had everyone in the sanctuary laughing and crying; there is a reason we had 70 packets of tissues handy (thank you, Kleenex).

I only lost it a few times. Mostly, I was beaming, thrilled by his delivery and confidence. Boy, was he in control. Max told one of his cousins "Shhh!" when he heard her talking, and directed Sabrina where to stand when she came up to sing a song with him. At the end, he gave the rabbi a hug. After stopping by a pew to give his teacher one, too, he booked out of there for his party. (We had the ceremony videotaped, I will share it once I get video.)

At the cocktail hour, Max hung out with friends. He downed a piña colada from the kids' bar, then requested another. He wasn't embarrassed when I ate my body weight in pigs in blankets. He corrected anyone who called him Max—since of course, his actual name is Fireman Max.

He made an ecstatic entrance into the party room wearing his Fireman Max hat as Firework played. He danced it up. Max had asked to not be raised high on the chair during the hora, but when the predesignated Max Lifting Committee got him up there, he asked to go higher. Then he asked to do it again. Then he wanted Dave to go up on a chair. Then me. Sabrina went up, too. Baby Ben: no.

Max welcomed special guests to light candles on his cake. He and the kiddie crowd played games with the DJ. He watched, in awe, the photo/video montage I'd made of his life, and kept watching it again and again as it looped on the video screens. He ate a giant slice of birthday cake. He got pics taken in the photo booth. He danced some more, including our mom/son duet to "Just The Way You Are."

And when it was over, he requested another bar mitzvah. "This year!" he told me, hopefully.

Umm....

I wasn't just proud of my boy, I was all-out wowed by him. It was a day to celebrate Max becoming a young man, but also a day to celebrate how far he has come.

I am too fried to say more, so for now, I'll just share the speech Dave and I made at the party. Max held the mic for us the entire time.

Ellen: My friend Wendy recently gave me a compliment; she said I always choose happiness and joy in life. Actually, that’s not completely true. Happiness was delivered to me and Dave, and his name is Max. From his first smile at two months old, Max has added cheer, exuberance and joy to our lives, and to basically everyone who comes into contact with him. To know him is to adore him.

Dave: Behind that smile is a whole lot of strength, determination and will. (Stubbornness, too, which explains why Max’s first word was “No!”) Max knows exactly what he wants, at all times. When we went on a joy trip last winter, Max chose the destination — Chicago. He watched videos on YouTube about Chicago and when we were there, it was him telling me how to get around.

Ellen: Max has shown us the way throughout his entire life. He has shown us what true perseverance is. He has shown us how to appreciate the inchstones, along with the milestones. He has shown us the many meanings of “ability.” He has shown us that it’s perfectly OK to be on your own timeline, proceeding at the pace that is right for you. He has shown us the beautiful range that is humanity. And, of course, he has shown us the way to the nearest fire station, wherever we go.

Dave: We’re so glad you’re here to celebrate Max’s bar mitzvah. You’ve come from places near and far including Tennessee, Missouri, Texas, Georgia, Chicago, Los Angeles, Maryland, Massachusetts and that truly exotic locale, Brooklyn, New York. So many of you have played a role in Max’s life, whether directly with him or enabling me and Ellen to be the best parents possible to him.

Ellen: My father, Zaydie, is here with us in spirit, and likely wondering how good the food is—he loved a good meal. He was impressed by Max’s progress, and he would have been so proud of him today. At the beginning of Max’s life, we only hoped this day would come; eventually, we knew it. “I can see the brightness in his eyes,” a doctor once told us. I know that today, you've seen it too.

And if you'd like to see more...

Max's bar mitzvah, in photos

What I hope people saw at Max's bar mitzvah

13 years of one amazing boy: the video



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