Friday, September 29, 2017

The Disability Blogger Weekend Link-up: Nice to see you again

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: 5 ways to get an appointment with a doctor who has no openings

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, September 28, 2017

5 ways to get appointment with a doctor who has no openings: Ability Hacks

Juggling our children's various medical appointments can be a full-time job, but it's not exactly something you can pay someone on TaskRabbit to do. So then, there's us parents...and hacks that help you get in to see a doctor who's booked up for months. These are a few tactics that have worked for me. Remember, there's no such thing as being too pushy when it comes to getting our children the care they need. You're not doing this for your health, after all—only theirs. 

1. If at first you don't succeed, try, try, try, try, try, try, try, try, try, try, try, try again. 
When I'm told that there are no immediate appointments to see a doctor, I have been known to check in every single morning. Or I'll ask the staffer to call me about cancellations—I've literally said, "Can you put up a post-it note on your computer with my name and number so if there are any cancellations, you'll call?" Be polite, but be that parent who doesn't let up. 

2. Appeal to the social worker.
If you're dealing with a team at a hospital, reach out to the social worker. This worked for me years ago, when I was trying to get Max in to a renowned developmental pediatrician at a hospital. He had no openings for six months. I got in touch the social worker. I told her about Max's stroke at birth and how anxious I was about his future. And just like that, we were in. Sometimes, hearing the story behind the patient on paper opens doors. 

3. Befriend a nurse and/or office manager. 
This works well for any doctor you regularly visit, like the pediatrician, especially if it's a pretty busy practice and it's hard to get a well visit appointment at a desirable time. Chat with the office manager, get to know one nurse in particular. Make any special needs known; since Max is at high risk for seizures when he has a fever, I always try to get him in for a flu shot ASAP. Have your child say hello and interact with them. Give a gift during the holidays. When you can't get an appointment or urgently need a form filled out, bypass the person who makes appointments, reach out to the manager/nurse and beg shamelessly.

4. Have your people call their people.
And by that I mean, if your child's regular doctor knows the specialist, ask him or the office manager to personally put in a request for an appointment.

5. Last resort: email the doctor
Recently, I needed to get Max in to see an endocrinologist he's seen before, but all her after-school appointments were booked till January. I only pull Max out of school for doctor visits as a last resort. So I emailed the doc to ask what she could do, and she agreed to open up a spot 15 minutes before her appointments started one afternoon. I'm not saying every doctor will do this, but it is worth a shot. If this is the first time you're contacting a doctor, consider including a photo of your child in your email. Like I said: #shameless

Ability Hacks appears occasionally on the blog; the last one was about self-feeding tips for kids with disabilities. Got something you need help with? Email lovethatmax[at]gmail[dot]com.

Wednesday, September 27, 2017

Letting our children learn from their mistakes: not always easy, but worth it

This excerpt is from the new memoir Loving Lindsey: Raising a Daughter with Special Needs by Linda Atwell. For years I've read about Lindsey, now 37, on Linda's blogLindsey has a tremendous spirit, a strong well, and intellectual disability, and her mom writes lovingly about her while telling it like it is. The book is the same, a beautiful coming-of-age story. 

When Linda first mentioned the book to Lindsey, Linda recounts,"she asked me if I was going to tell the good, the bad and the ugly. I told her that, yes, I would do just that. She said, 'Well, I am pretty funny. As long as you tell the truth, it's OK by me!'" Linda did not disappoint.

"It’s a cashless system on the ship," I explained to my kids, during lunch on the Lido Deck. I showed them the cruise-ship charge cards they would use over the week. "Whenever you want something, like a soda or a souvenir, you give them this card." I handed one to Lindsey, and her eyes grew wide. "At the end of the week, we’ll get a bill."

"I get my very own charge card?" my thirteen-year-old asked, holding the rectangle tightly between two fingers.

"It’s like money," my husband said between bites of pepperoni pizza. "Don’t spend more than you can afford."

"And don’t spend it all at one time," I added. "Budget so your thirty dollars will last the entire week."

Lindsey opened a pocket on her Hello Kitty wallet and slipped the card inside. "Now I’m ready to explore. Do you think I’ll get lost?"

"Nah," her little brother said, acting as if he were captain of the SS Minnow. "You can’t get lost."

That wasn’t totally true. John and I had become disoriented on past cruises, believing we were aft when we were actually forward, but being confined to the boundaries of a floating resort helped. "Stick together," we told the kids.

"But she’ll cramp my style!" Michael waved his hands in the air, rejecting our suggestion. What style? He was only ten.

"Whatever, Michael," John said, wiping his mouth with a napkin. "You need to keep an eye on Lindsey." Michael shrugged and rolled his eyes.

"I don’t wanna do what Michael’s doing," said Lindsey, picking fry salt off her fingers. For all of her challenges, she possessed a keen sense of direction. "I don’t wanna be rushed. I wanna explore on my own."

"Okay, then," I said, though I worried this might not be such a good idea. "As soon as we finish eating, we’re going to the Sun Deck for the sail-away party. When you’re done, come find us. If you get lost, ask a crew member for help."

*      *      *

"To a week of fun in the sun!" I clinked my glass against John’s, then sipped my slushy margarita.

"I have some for Michael, too," Lindsey said, appearing out of nowhere and handing me a silver-and-gold key chain and a blue-and-gold pen, both imprinted with the Princess Cruise Line logo, as well as a bag of chocolate candies. "They were free." She distributed identical trinkets to John.

"Where did you get these, Linds?" I asked. I knew they weren’t free.

"In the gift shop. They wouldn’t take my money. The lady gave them to me." Her huge smile exposed the small gap between her two upper front teeth. I mentally calculated the value of the items and realized she had spent most of her thirty dollars in one shopping spree, and we’d just set sail. I turned the souvenirs over in my hand.

"Lindsey, don’t you remember? We talked about how the ship doesn’t take cash...." I started to say.

"Yes, but these were free."

"Did they ask for your card?"

"Yeah, but the lady said I don’t need to worry ’bout paying."

"That doesn’t mean they’re free," I noted. "She meant you didn’t need to pay right now."

I explained and reexplained the cashless system, like I’d explained and reexplained millions of other things her mind didn’t digest on the first or second or third attempt. It wasn’t her fault the short in her brain messed her up, but boy, it sure could be aggravating. For both of us. Lindsey crossed her arms and stared at me as if I were speaking French instead of English. "Is this really how you want to spend your money?"

"All the stuff was free." Lindsey’s arms and head tremored. She clenched her jaw. We were at an impasse. "Don’t you like your presents?" she asked, her voice tinged with hurt.

"It’s not that," I said, her sadness tugging on my heart. "You can keep all these treasures"—I paused—"if you want. But let’s go back to the room and add everything up." Lindsey scowled.

"Let Mom help you," John said.

She followed me down the steps, and through the long corridor to stateroom 2112. I pulled a calculator from my purse and added all the prices. "You spent twenty-six dollars and thirty-five cents. If you keep all this stuff, you’ll have less than four dollars for the rest of the week. Is that what you want?"

"It’s not free?"

"Did the salesperson take your card?" I asked again. Lindsey nodded, fury evident on her face. "If she scanned your card, you’ll pay when the bill comes."

"You don’t know what you’re talkin’ ’bout, Mom!" Lindsey’s hands flew around in the air. She was verging on a meltdown, and I didn’t want to start our vacation that way.

"Stop!" I held out my hand like a school crossing guard. Lindsey froze in place, like a child playing freeze tag. It was as if she had an invisible barrier around her. "Listen!" I wished I’d thought to use this counselor-suggested technique earlier. Before I’d finished the final command, my girl started counting. Loudly. Once she reached ten, I offered a new solution.

"Let’s go to the front desk and talk to the purser," I said, hoping she’d be more receptive if a neutral party confirmed the news. Lindsey shoved the gifts into a plastic bag and followed me out of the room, along the corridor, and up the stairs.

"Twenty-six dollars and thirty-five cents," Alex at the purser’s desk said. He handed my daughter a printout.

"I have to pay this?" Lindsey turned away from me and leaned closer to the purser.

"Yes, ma’am," he said. "At the end of the cruise."

"What do you want to do, Lindsey?" I asked. "Do you want to keep the items and give them away as gifts, or keep them for yourself?" I exhaled slowly. "Or do you want to return them?"

"Can I?" Lindsey asked, the anger snuffed from her voice.

"Let’s go see."

Lindsey retraced her steps and arrived at the gift shop doors without any detours. Guess she won’t have trouble finding her way around, I thought, seeing a young woman standing at the cash register, smiling.

"I tried to explain the process to your daughter," Greta said.

"I know." I nodded and inquired whether everything could be returned.

"Of course." Greta took Lindsey’s card and scanned a credit. Lindsey thanked her; I thanked her. Several times. We climbed the stairs toward the Sun Deck.

"It’s nice you wanted to bring us gifts." I wrapped one arm around my girl’s shoulders and squeezed. "You’re a very considerate young lady."

"I thought they were free."

"We all make mistakes. Now, let’s go have some fun."

Excerpted with permission from  Loving Lindsey: Raising a Daughter with Special Needs by Linda Atwell. Photos by Kristine Thomas. 

Tuesday, September 26, 2017

The obsessions don't go away—they just get more mature

For years, we have lived through Max's various phases and obsessions. Endured, some might say. Recently, they've taken a turn for the better. Less annoying, some might say.

The purple phase, which started seven years ago, was welcome at first—I was thrilled Max was expressing a definitive like. Purple! Everything needed to be purple! But then: EVERYTHING. NEEDED. TO. BE. PURPLE. The clothes he wore, the plates he ate off, his bed sheets, his band aids: purple, purple, purple. People started mailing Max purple presents and emailing photos of purple homes.

His fascination with car washes and spaghetti overlapped the purple phase, hence the reason he wanted to be known as Purple Car Wash Spaghetti Max (trademark pending). During this period, Max ate lots of carbs. Our car was very, very clean, especially since he liked going through the car wash twice in a row. One year, I made him a portable car wash for Halloween.

Next, the movie Cars came out, and Max got really into Lightning McQueen. Then Cars 2 came out, and he needed All The Merchandise.

Three years ago, Max decided he wanted to be a firefighter when he grew up. He began calling himself Fireman Max. We visited our fire station at least once a week, along with others. We amassed all sorts of toy fire trucks. In March 2016, Max did a fire safety presentation for his bar mitzvah's good deed project, and both of us were so proud.

Now, he had career aspirations. And the interests kept maturing: Max got into traveling places, starting with a Chicago trip he planned; he wrote guest posts about it before and after. These days, the wanderlust continues. He's got his sites set on Las Vegas, the next boys' trip he's going on with Dave (and, this time around, Grandpa Michael). Max tells everyone he knows or meets that they're headed to Las Vegas, and repeatedly talks about his schedule—leaving for the airport at 6:45 a.m., birthday dinner at 6:30 p.m. at Benihana's, a Dairy Queen ice-cream cake, visiting a fire station, yada yada.

When Max was an infant, the pediatric neurologist told us to expose him to as much as possible to help expand his mind. At first it was next to impossible, because he had sensory issues that made him fear crowds and noise. But now, all he wants to do is explore the world. Throughout the week he keeps asking what we're doing on the weekend to make sure he's fully booked.

Recently, Max got it into his head that he'd like to take the train to school instead of the bus. Last Friday morning, Dave and he headed off to the station. As luck would have it, there had been an accident and the trains weren't running. Max took it completely in stride. They'll be going tomorrow morning instead, just a dad and his son headed to school, anywhere and everywhere.

Monday, September 25, 2017

"It's disgusting!" he said: Everyone's got an opinion

None of my children hesitate to make their opinions known, they just have various ways of doing it. Ben likes to shriek in excitement or disappointment (both at the same extreme decibel levels). Sabrina tends to cock her head to one side, look you in the eye and speak her mind. Max, he likes to repeat himself again and again and again.

It happened Saturday night, when we went out for sushi. We visited a restaurant we've been to before that Max has always liked. He ordered his usual: miso soup and two avocado rolls, no seaweed (that's hard for him to chew). "Sixteen pieces!" he informed the server, verifying that each roll came with eight.

At some point into the meal, though, Max decided he wasn't into it.

"It's disgusting!" he announced.

I almost spit out my spicy tuna roll, because I started laughing. I couldn't help it.

"What's disgusting?" I asked.

"This!" he said, pointing to his mishmash of soup and sushi.

"That's how you always eat it!" I said.

"I know!" he answered. And then: "It's disgusting!"

I'd never even heard him say that word before.

Max wasn't noting this very quietly, either, and the tables were close together. For once, I was grateful that his words aren't always intelligible, because he kept saying "It's disgusting!" every few minutes. He had a grin on his face the whole time.

The sushi at this place is actually really good, so I didn't get why Max had taken a dislike to it.

"Please, don't say that in front of our server, it's not nice," I cautioned him, and he refrained. But the second she was out of earshot: "It's disgusting!"

Dave and Sabrina were too busy stuffing their faces to notice. Meanwhile, Ben was putting his hands into his bowl of ramen noodles then running noodles through his hair. Disgusting!

I picked up a piece of salmon sushi and popped it into my mouth as Ben combed more noodles through his hair and Max chanted "It's disgusting! It's disgusting!" We've come a long way from those days when Max had issues with noise and crowds and going out to restaurants was like an episode of Survivor. Max is alarmed now only by eating weekend dinners at home (he looooves to go out)—and sushi he is over.

Max does have a tendency to perseverate. It's comforting to him. But I think part of what happened Saturday night was Max's pride in asserting his opinion. That meal was not up to his standards, and he wanted to make quite sure we all knew it.

He didn't stop till we left the restaurant, then let it go. But when it came time to write his weekend recap for Monday homeroom, there it was, right at the top of his list:

"I went out to sushi. It was disgusting. On Saturday."

Friday, September 22, 2017

The Disability Blogger Weekend Link-up: You are here

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: A return to Early Intervention, and it's all good

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, September 21, 2017

When your child knows his strengths

I went to Max's back-to-school night last week. Students had written up profiles of themselves that the homeroom teacher tacked up on a bulletin board outside the classroom. Max's read:

"I like to eat sushi and miso soup and 8 avocado rolls" (He meant 8 pieces)

"I like to read books"

"I like books about fire trucks."

"My birthday is December 10"

And most impressive of all: "Something I do very well is...make friends."

For years, I've helped Max see his strengths. That's a basic part of any parent's job description, but it's seemed extra important with a child who has physical and cognitive challenges—I don't want him to ever feel like he's lacking in any way. While we don't go overboard, because that defeats the validity of praise, we do regularly dole it out.  Dave and I rave about Max's keen sense of direction when he tells us which way to drive if we go the wrong way. We give him props for being an awesome big brother to Ben when he helps Ben out or warns him not to climb up on the kitchen chair. We praise him for knowing the answers on his homework worksheet. I tell him that he a good hair day every day.

Max's teachers have been instrumental in building up his confidence, especially his former one, Linda. "You're a smart guy!" she said to him one day years ago, and the phrase stuck. "I'm a smart guy!" Max would tell me, beaming, and he believed it.

Thing is, I rarely otherwise hear Max tooting his own horn. While Sabrina will come home gushing about acing a test or running for several miles during cross-country practice, Max doesn't yet do that. Which is why it was so heartening to stand there in the hallway of his school and read that line on the bulletin board. Yes, he really is good at making friends—Max is exceptionally personable and charming. And I was glad to know he knows it.

I was equally happy to read about his plans for the school year:

Wednesday, September 20, 2017

I will gladly eat that plastic hot dog for dinner

After I put Ben to sleep the other night, I came downstairs and heard clanking in our dining room. I walked in to find Max playing with Ben's toy barbecue set. He flashed me a big grin.

Max used to have one of these when he was little. I can still hear its voice: "Let's fire up the grill!" Except Max couldn't grasp the tools or play food. He also wasn't into pretend play.

"Hey, Max, I'm hungry—want to make me dinner?" I asked.

"YES!" he said, enthusiastically.

I headed off to the living room to catch up on email.

Max walked in a little later carrying a pan with two hot dogs, then accidentally tipped them over. It took a lot of doing for him to pick up the franks—they're on the small slide, the plastic is slippery and he insisted on using his left hand alone (his "good" one). Finally, he managed to plop them back into the pan.

I took a bite.

"I don't know, Max, I think they need to be hotter!" I said.

"OK!" he said, and off he went.

I had a pang of "Is he too old for this?" But he was having fun flexing his imagination. He was working on his grasp. And I was relishing something that I hadn't gotten to enjoy when he was little.

I heard more stuff fall on the floor. "Ohhhhhhhhh!" said Max, frustrated. He walked back in carefully carrying the pan. Once again those hot dogs fell out and whenever he managed to grab one it slipped away. I got up to help. (In retrospect, I realize I should have slapped some on some Model Magic, this Crayola putty that helps Max grip stuff.)

"They're hot!" he cautioned me.

I blew on one and he laughed. Then I pretended to nibble it as Max walked off, likely to check on the lemon meringue pie he was whipping up for me. (My sweet tooth has a fantasy life all its own.)

"OK, Max, how much do I owe you?" I asked when he came back, sans lemon meringue pie.

He held up ten fingers.

"Ten dollars?!" I said. "Don't you think that's a lot?"

Max pondered that. "Five dollars!" he announced. So I went to my wallet and gave him five bucks. Then we headed upstairs to his room and put the money in his wallet. He's saving up for his boys' trip to Las Vegas in December. He says it's for food. (See: Mom of the Year.) (See also: What happens in Vegas stays in Vegas.)

To be sure, I can encourage more actual cooking, which would be more age-appropriate for Max and beneficial for our entire family, given the fact that I'm not much of a cook. Still, there is no statute of limitations on pretend play, just as there's no statute of limitations on anything developmental. It's not like Max is pretending to make scrambled eggs at his desk at high school; he realizes this is something to do at home, with me.

But if you'd like for Max to cook you a plastic hot dog, I'm sure he'd be happy to.

Tuesday, September 19, 2017

A return to Early Intervention, and it's all good

"He's eligible," the Early Intervention coordinator told me. We were seated in our living room along with Ben, a speech therapist and an occupational therapist. Ben had qualified for Early Intervention.

"That's good!" I responded. She seemed a bit taken aback by my enthusiastic reaction. "I have an older son who was in Early Intervention, and I'm glad to get Ben any extra support that could help him," I explained.

I meant every word.

Ben's speech has been coming along, but not at the pace it should. I knew it back last spring, and I didn't hesitate to get an EI evaluation. He didn't make it—he was just on the cusp. They told me to call back in a few months, and I did. This time, they decided he could use a weekly speech therapy session plus a separate one with a developmental interventionist, essentially a teacher.

We met with the teacher, Susan, last Friday. As is typical of EI, it consisted of play. Ben did an admirable job putting puzzle pieces in the right spot, making choices and asserting his needs ("Bubbles! NOW!"). The teacher kept remarking that he was doing an admirable job and had nice communication, along with how cute he was which makes him off-the-charts adorbs.

I was so calm and optimistic about Ben as we sat there, the opposite of how I'd felt years ago when Max entered Early Intervention at the ripe old age of two months. "Anxious mess" pretty much described my state back then, because I knew Max was at risk for not being able to do many things. "Get him as much therapy as possible," a renowned pediatric neurologist had advised us, and we did. Within the first year of his life, he had ten therapy sessions a week including speech therapy, occupational therapy and physical therapy. On weekends and after work, Dave and I took him to craniosacral therapy and hyperbaric oxygen treatment. We were driven by equal parts love and fear.

As the months passed, I grew to accept that Max was on his own timeline. I was still so worried about whether he'd walk and talk, and what the state of his cognition would be, but I took heart in the progress. When he started commando crawling at 15 months old, Dave and I rejoiced. It didn't matter that the other kids his age were walking or on the verge of it; Max was getting around, pulling his body forward with his arms because his limbs and torso weren't yet strong enough for him to crawl on all fours.

Max's physical therapist, Mindy, ultimately helped him walk, first with a walker and then independently. His speech came along, and then God and Steve Jobs (some believe them to be one and the same) invented the iPad, which opened up a whole new world of communication. When Max aged out of Early Intervention at three, I assembled a team of private therapists and got his EI occupational therapist to stick with us for a few more years. They've rotated in and out over the years, except for Jeri, who has been seeing Max since he was two years old.

I know there are parents out there who are hesitant to enroll their children in Early Intervention; one recent study I wrote about here found a big gap between the number of young children with disabilities and the number getting EI. Sometimes, parents worry about a perceived stigma. Sometimes, they just don't want to face up to the fact of a child's delays.

I have only gratitude to the legions of therapists who've seen Max through Early Intervention, at school and in our home, and who've helped him reach his capabilities and beyond. I am grateful to them for showing me and Dave how to better enable Max. I am excited to have two new OTs in his life who are helping Max figure out ways to be more independent, especially with personal care.

And now, I am genuinely happy to have therapists giving Ben a boost early on his life, when it can make a particularly big difference.

Toward the end of Ben's first therapy session, Max's bus showed up. Max headed into the living room and asked, "Who's that?" I explained that Susan was there to help Ben with his words. "Oh!" he said, and proceeded to plop down on the couch and watch and encourage Ben. "Good job!" he said when Ben put Mr. Potato Head's eyes on his face. A few minutes later, Sabrina walked in the door and she joined in as as well.

I watched my three children sitting together, and I felt so, so lucky.

Monday, September 18, 2017

What kind of job will my child with autism have? An excerpt from To Siri, With Love

I've known Judith Newman, author of the bestselling new memoir To Siri, With Love, for a long time now. She's a funny, compelling writer who doesn't hold back, and I expected no less from this series of stories about raising her son, Gus, who has autism. Full of memorable anecdotes and musings along with the latest research, the book may be about autism but any parent raising a child with disabilities will relate to it.  

My copy is full of underlined passages, where I felt as if Judith had scanned and downloaded my brain. YES to obsessing about whether you caused your child's condition. YES to refusing to look at the neuropsych test results because of the paralyzing fear that comes with certain knowledge. YES to tolerating your child's need for repetition, even if it means he's eaten the same breakfast for years on end. YES to the double-edged sword of hoping your child will someday feel self-consciousness and embarrassment, in the name of self-awareness that will better help him understand what others think or feel. 

I was especially taken with the chapter where Judith wondered what kind of work Gus might find someday; I always wonder that about Max. Here's an excerpt.  

“Bye, I’m going to work!” Gus says after dinner, as he has for the last three years. And work he does, for as long as the doorman who’s on that night will let him. I don’t know when he got it into his head to b e a doorman, but once that idea was there, it stuck.

At first it must have been rather startling, this tiny kid who would don the doorman’s jacket and sit at the front desk. But now everyone knows him, and Gus takes the job seriously. He knows the name of everyone in the building, their dogs, their apartment numbers. He knows all the food deliverymen. The moment a person comes into the building, Gus checks the computer to see if they have a package, lets them know, and gets it from the mailroom if they do. No amount of insistence on my part can make him understand that it’s rude to ask people where they are going or what they are doing that night, or who this “new person” they’ve come in with is—a particular problem for one main in the building who is known for having a parade of paid companions. Gus stops all the deliverymen, including the guy who delivers weed to half the building. I believe he’s told Gus he works for GrubHub.

“Job.” J-O-B. That word has music and beauty to me. It is not just about making money. It is knowing your kid will have a place in the world. Over five hundred thousand people with autism will become adults over the next decade, and most of them won’t have a job, according to a 2015 study by the A.J. Drexel Autism Institute. That’s a lot of people with nothing to do and nowhere to go. And while of course there are those with medical and/or cognitive issues that make employment out of the question, there are many more who are perfectly employable, with a bit of flexibility and attitude adjustment.  

I am not talking about the very small percentage of exceptional autistic geek talents so well represented in Silicon Valley; the Temple Grandins and John Elder Robisons will take care of themselves. (Though even in these cases, I don’t want to be cavalier. High IQ and specialized skills aren’t always enough.) Rather, I mean the more pedestrian but still very needed tasks that play upon the autistic individual’s love of repetition, or passion for categorizing objects. How many people in this world actually love to take apart electronics and sort out the parts? If you’re on the spectrum, that activity might make your day. Certainly that was Bill Morris’s thinking when he started Blue Star Recyclers in Denver, a company that is both cutting down on electronic waste and employing people who are excellent at dismantling and sorting.

*         *        *

After three years, Gus was fired from his job as a doorman.

I was shocked. I’d had people I barely knew stop me in the elevator and tell me how having him there to greet them so enthusiastically cheered them at the end of the day. Becky, a recent divorcée who’d been going through a rather painful time, told me Gus had gotten into the habit of waiting for her when she took her pit bull, Francesca, for their last walk of the day, then gallantly escorting them to their door. On the rare occasions when he wasn’t waiting for her, she said, her day felt incomplete.

Of course I didn’t hear from the people who found him annoying. And someone—or maybe several—did. Maybe they didn’t like being asked where they were going, or maybe there was something about having that little garbled voice buzz them on the intercom when food was being delivered that reminded them they were paying for actual union doormen, and this was a little unprofessional. Whatever the reason, Gus’s job was no more.

I took for granted that people would make allowances for my son, that they should, because he was such a good boy. And when they didn’t, and I had to tell him he was laid off, I made up the excuse that the doormen’s union wouldn’t allow him to work until he was eighteen. He pouted, but he accepted it. Then I went to my bedroom and locked the door and sobbed deep heaving sobs. I was embarrassed. Embarrassed that I had believed my autistic son was actually performing a service, when it fact he’d been merely tolerated, a nuisance. Embarrassed that I had the audacity to convince myself that he was actually in some sort of training, that someday he would have a job like this, that he would be just another dude with a job, a guy who’d get a million hellos.

The false job had given me false hope.

Then Gus got a little older, less pushy, and wasn’t insisting on operating the intercom to announce visitors. He’d just hang out, greet people, and find their packages and dry cleaning. In this he was actually useful—or at least that’s what the new doorman tells me. And I guess I need to believe it.

In truth, I don’t know what Gus will be able to do. I do know that he practices a kind of learned helplessness; I did not know, for example, that he could pour a glass of milk for himself until one day recently I got vertigo and couldn’t move without being wildly nauseated, and no one was around, and Gus really, really wanted milk. I thought about John Elder Robinson’s mention in his book of the low expectations we have of people with autism, and how it extends to everything in their lives.

Last year there was a viral YouTube video called “Dancing Barista.” A kid with autism named Sam is a barista at Starbucks, his dream job. But Sam had been told he was unemployable; his movements are jerky, and he can’t really sit still. As he explained when he and the store manager appeared on Ellen, “I can concentrate when I dance.”

And so, he does. The video makes me cry every time, but it shouldn’t, because there is nothing sad about it. The lovely Starbucks manager saw he could make someone’s dream come true. He looked past the jerky movements and the lack of conversation and saw a goofy teenager with a burning enthusiasm and a talent for making the perfect head of foam. All he had to do was let him dance.

Adapted from pages 147-156 of To Siri, With Love (Harper Collins, 2017), with permission from the author.

Friday, September 15, 2017

The Disability Blogger Weekend Link-up: You know what to do

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: "Be nicer to people, President Trump!" An interview with the cast of Born This Way

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, September 14, 2017

"Be nicer to people, President Trump!" An interview with the stars of Born This Way

I recently got an opp to interview a few of the stars of Born This Way. As on TV, they spoke their minds and hearts, sharing thoughts on raising children with Down syndrome and bullying—along with a few choice words for our president.

The series, which follows the lives of a group of young adults with Down syndrome living in Southern California, has raised awareness and busted stereotypes about having a disability, and helped people see why inclusion should be the rule, not the exception. It racked up six Emmy nominations this year, including one for Outstanding Unstructured Reality Program (which it won last year).

The cast continues to score individual successes. Sean McElwee has started his own clothing line, Seanese. Rachel Osterbach is pursuing her dreams as an actress. John Tucker, an aspiring rapper/musician, is working on several original songs and will be collaborating with DSON, a rapper. The three also do speaking engagements, both in the U.S. and worldwide.

Here they are, not holding back.

Born This Way has helped people better understand what life with Down syndrome is like. But what do you think people still don't get?

Rachel: "I think that people still do not understand that people with Down Syndrome can really live independently."

Sean: "Probably that we have help to do the things we want to do and I have a job coach, a supported-living staff and they drive me places and help me shop and everything. And Chef Gino helps me cook too."

John: "Born This Way has helped people see that even though we have Down syndrome we have goals and dreams. We are just like everyone, we want to succeed."

Sean McElwee
What advice do you have for parents raising children with Down syndrome?  

Sean: "Let your kids try things they want to even if you don't think they can do it because they might be able to with practice. My mom and dad helped sign me up for things I wanted to try like singing and dancing and sports and acting. And I couldn't even talk very good but she signed me up anyway."

John: "Be patient and helpful with a child even if it seems their dream is unattainable. Try harder, you will get a answer one way or another."

Rachel: "My advice is not to be scared—don't limit your child, give them a chance to be included in the world and to show what they can do. My parents have always loved me for who I am, and that is the most important thing."

Rachel Osterbach
If President Trump were to appear in an episode of Born This Way, what would you tell him face to face?  

John: "It's not fair to make fun of people with disability. It hurts."

Sean: "I would tell him not to take away my services that help me be independent and to not be rude. And I would tell him to let me be the next president and show him how to respect everybody."

Rachel: "If President Trump came on the show I would say to him, 'What you are doing in this world is not right. You need to pull yourself together and be nicer to people!' I would talk to him in private about showing people with Down syndrome more respect. I think Trump needs therapy. I think I should be the next president! I will be 35 in December, so after that I can be president."

John Tucker
In recent years, there has been a push to end the use of the r-word. What do you have to say about it? 

Rachel: "I do not like the r-word, and people should not use it. It is not nice to say that to anybody—it is really bullying someone when you do that. Someone called me the r-word in high school, they called me a 'retard' and I felt uncomfortable and upset."

John: "The r-word is degrading to anyone with or without a disability. It is as offensive as the n-word."

Sean: "Let's end it. I hate that word. Nobody ever called me that but I hear it and it makes me sad."

UPDATE: Born This Way won two Emmys, for Casting for a Reality Program and Cinematogrophy for a Reality Program. Rachel and John made history by becoming the first individuals with Down syndrome to present an aware at a major televised award show.

Wednesday, September 13, 2017

His awareness of people with disabilities: a work in progress

"I'm excited!" Max said, gleefully. We were chatting about his new school. I love how giddy he is about it. He's asked several times if he can visit his old school, so I know he still has pangs about it, but the transition to high school has been pretty seamless.

Then we started talking about Ben going to Tots Class, and I was taken aback by his question.

We had the day to ourselves. Dave has taken Sabrina and Ben to a food festival in Brooklyn, Smorgasburg; Max wasn't up to walking around a lot because of the cast on his foot. We saw Cars 3, which basically enabled me to catch up on email (it was better than Cars 2, although that's not saying much).  After, we had mashed potatoes and grilled cheese for lunch (Max inherited my carb gene), then we did a few errands.

As we were discussing school, I noted that Ben was at the same preschool Sabrina went to when she was little.

"Is Ben going to go to my old school?" Max asked.

Max's old school is exclusively for students with disabilities.

We've been talking about his cerebral palsy for several years now, starting when he was 10. Back then, he knew Sabrina didn't have CP but thought Lightning McQueen did. His understanding has evolved and he now gets that sometimes his muscles don't do what he'd like them to do because of the CP.

Evidently, though, Max didn't see his peers at school as having disabilities.

My mind whirled. Should I point out to him that his old school is only for people with disabilities? And his new one, too? Would that be good for him to consider? But why should I change his perceptions of his peers, peers in wheelchairs and peers with Down syndrome and peers who were nonverbal, whom he didn't view as being any different than Ben? Isn't this how I want others to treat Max—just like any person? Then again, don't I want him to understand it's good to own your disability?

In the end, I just answered, "I don't think Ben will go to your old school."

"Why?" Max persisted.

"I think he will go to Sabrina's school," I said.

We left it at that.

There will be plenty of other opps in years to come for bigger discussions about disabilities. That's a good thing, because clearly I don't yet have all the answers. Which makes me a work in progress, too.

Tuesday, September 12, 2017

You don't have to give my child free mac 'n cheese

This is the latest edition of the ongoing series "You don't have to give my child free ____." I wrote about the phenomenon last fall, when someone at Dunkin' Donuts gave Max free donuts. People suggested that the DD woman was just offering a cute boy a treat. I thought she felt badly for him. Pity presents bother me.

It happened again over the weekend, this time with mac 'n cheese.

Trust me, Max does not look like a boy on the verge of starving.

We were at a food fair at the Jersey Shore. There was a stand selling lobster mac 'n cheese. "Do you have any plain mac 'n cheese?" I asked, as Max stood by my side and Ben sat in the stroller. "He's not into lobster." Dave was off finding parking; Sabrina was at a party.

"No, sorry, we don't," said the guy at the register. A man standing in the back explained that all the mac 'n cheese was pre-made with lobster.

"Awwww," said Max.

"I'm sorry," the guy at the register said again, watching Max. A woman standing next to him gave Max a sweet smile.

"He'll survive!" I said, cheerfully. Off we went to find some other food fix, and lo and behold we discovered mac 'n cheese balls, aka fried mac 'n cheese. A veritable superfood!

I sat down with Ben to devour fried potatoes on a stick (almost as healthy as kale!) while Dave and Max cruised around in search of other fine cuisine. When Dave returned, he was holding a container.

"Did you try to get mac 'n cheese for Max?" Dave asked.

Some woman had walked up to him, said "This is for your son," handed him a container and walked away.


"I'll be right back," I said, grabbed the container and walked over to the stand.

People are only being kind when they do stuff like this for Max. But I don't want them to feel badly for him, because it is rooted in the thinking that having a disability is unfortunate. Nor do I want the day to come when Max becomes aware that people give him treats because they think having a disability is a sorry situation.

This is not to say that people with disabilities don't need and deserve accommodations at times—of course they do. For one, we've received passes to bypass lines at amusement parks because Max cannot stand for long periods of time; his muscles fatigue more quickly than other people's do. And of course, there are common courtesies people regularly extend to others clearly in need. When we got to the food tent, a guy noticed the cast on Max's foot and offered him his seat. That's exactly what most of us would do for someone with a cast.

What I'm saying is, giving a freebie to someone simply because they have an intellectual or other disability is other-ing—it's yet another way Max is made to feel different than other people. Why should he go through life feeling that way? If a vendor at a food fair wouldn't have gone out of his way to make plain mac 'n cheese for any child, he shouldn't have done it for Max. And my guess is, they wouldn't have done this for just anyone. I say that based on years of seeing Max be the recipient of such good deeds, and noting the sometimes sorrowful look on people's faces when they interact with him that say, "Here, life is hard enough for you, you deserve a treat."

As Max's mom, I may think life at times is more difficult for him, especially when I see him struggle to articulate a word or grasp an object. But Max doesn't see his life that way—he's just going about his business. And I never want him to think of himself as being a person who deserves perks because others consider his disability lamentable. People have never spontaneously offered his sister, who doesn't have disabilities, free anything for merely existing.

I approached the counter.

"Did you make my son mac 'n cheese?" I asked the guy at the register.

The guy behind him spoke up.

"It was easy enough, I found some cream in the back and made it," he said.

"That was very nice of you, but please let me pay for this," I said.

"No, no, that's OK, we were glad to do it," he said.

And of course he genuinely meant that.

I was stuck in the position of seeming ungrateful, but I persisted.

"Really, how much would you charge?" I asked. "You don't have to give it to my son for free. We're glad to pay for it, like any other people."

There is only so much you can get into when you're standing at a booth at a food fair. But I so desperately wanted them to know that Max's life is as happy and fulfilling as any boy's his age. I so wanted them to understand that it is important for Max's self-image, self-confidence and self-respect to be treated like other boys.

Dave and I discussed it later. "It makes me a little uncomfortable," Dave agreed. "We're just there, walking around like any family, and suddenly I'm aware that people are aware of his disabilities."

Where do you draw the line? Just before we entered the fair, Max was standing in awe in front of a fire truck parked on the street. The guy who owned it (a firefighter who decided to buy an older truck) offered to give Max a ride around the block and I couldn't turn that down. Maybe there was pity mixed in there. I guess I didn't have second thoughts about it because it wasn't something this guy was asking anyone to pay for.

In the end, I thanked the mac 'n cheese people once again and left without paying. Max really enjoyed it, so much so that he saved some to take to school on Monday.

It's stayed on my mind. Yesterday, I looked up the catering company that owns the stand and sent an email thanking them and letting them know how much Max enjoyed the mac 'n cheese. I noted that sometimes, people feel sorry for Max but that it's unnecessary because he leads a great life. I said I never wanted him to think that anything is "wrong" with him. I offered to pay or make a donation to a charity of their choice. I hope I'll hear back.

Maybe I once again seem overly sensitive. Horrors! Nice people give your child free mac 'n cheese! And donuts too! No doubt, offers of tasty treats sure beat stares and discrimination, which we've also experienced over the years. Of course, these gestures are well-intentioned. People aren't thinking of anything but doing good.

As the years pass, though, I hope awareness continues to grow about treating people with disabilities like any other people. I hope when I write about these stories, it gives people food for thought. If you wouldn't give a freebie to a child or adult without a disability, please don't give it to my son. Maybe Max won't get the custom-made mac 'n cheese at the food fair, but he'll benefit from something even better: He'll be just another face in the crowd.

Image: Flickr/Memphis CVB

Monday, September 11, 2017

Why I'm thinking of this girl today

Every year, I think of her on this day: Melissa Renée Vincent. Her face comes to me at other times, too, especially when I visit Hoboken, NJ, where we both once lived. She was one of 674 New Jersey residents to die on 9/11.

I didn't know her. I'd seen her face on "Missing" posters all around town in the days and then weeks following 9/11. Finally, a few years ago, I looked her up and vowed to always remember her.

This year, in memory of Melissa, I donated to the Families of Freedom Scholarship Fund, which provides educational assistance for postsecondary study to dependents of people killed or disabled as a result of 9/11.

She would have turned 45 on October 24, this beautiful girl.

I will not forget.

Friday, September 8, 2017

The Disability Blogger Weekend Link-up: Back to school 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: I wish I'd known back then that he'd be OK

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, September 7, 2017

I wish I'd known back then that he'd be OK: Hello, high school

Sabrina started seventh grade Tuesday. Ben headed to Tots Class yesterday. Max starts high school today, which boggles my mind. As is always the case with milestone events, one thing keeps running through my head: I wish I'd known back then that he'd be OK. 

Those weeks Max was in the NICU are forever seared into my head and heart, the memories as raw and immediate as if he had been born last year: Your baby has had a stroke. It's a large one. You could sign a Do Not Resuscitate. He may not walk or talk. He could have vision and hearing problems. He could be cognitively impaired.  

The lead pediatric neurologist was The Grim Reaper of the NICU. He gave me and Dave no hope, only its opposite. We took Max home determined to do what we could to help him but full of anxiety and despair. 

"He'll be fine!" a friend reassured me at his baby naming. "Look at him!" I winced. Yes, Max looked like any other baby. But his brain was not OK. The signs of cerebral palsy emerged in the months that followed: clenched fists, spastic limbs and primitive reflexes that lasted long past infancy. He had a hard time focusing his eyes. I lived in dread of the speech and cognitive issues. I analyzed his every move. I felt grateful for the inchstones, even as I mourned the missed milestones.

I wish I'd known that Max would be fine. Not my original idea of what "fine" meant for a child, but a newly reconfigured version in which I grew to understand that Max's disabilities were one part of who he was, not all of him—and that he had plenty of abilities.  

I'd be fine, too, that parent who used to sob in the car as she drove her infant to therapy and specialist appointments and sometimes had to pull over because she was crying so hard. The new mom who in her darkest hour blurted to The Grim Reaper, "I don't want a handicapped child"—how was that me? I cringe now. Society does not set us up to think positively of disabilities.  

As Max grew up and progressed, on his own timeline, the dread I'd once felt about his future dissipated. There was no other child I wished for. I'd lucked out with him, this good-natured, cheerful, charming, mop-topped boy who beamed brightness into the lives of everyone who knew him. He figures out how to do things his way. Or he doesn't do them, and that's just the way it is. He has his strengths and challenges, same as any other human. I love him with every inch of my being and at times he drives me up a wall, same as my other kids. 

This week, I've been enjoying all the back-to-school photos of my friends' children on Facebook. Years ago, I used to compare Max to typically-developing kids his age and feel sad. This morning, I snapped his photo on the porch before he got on the bus. He looked just as amazing as any of them...and ready to kick butt in high school.

Wednesday, September 6, 2017

What our family didn't do this summer

This summer, we didn't take our children on any particularly adventurous trips—not to Wyoming, The Rockies, Europe or Iceland, where everyone seems to be going. We went to the local zoo eleventy billion times. Because: annual pass.

We didn't grill up salmon/kale/root vegetable kebabs, peaches or anything remotely Instagram-able.

I didn't dress my children in crisp whites and do a beach photo shoot. Half the time, they were walking around with chocolate ice-cream stains on their clothes.

We didn't make any fruit pies from scratch, with berries picked from an organic farm.

We didn't go to anyone's beach house...

...or on anyone's sailboat. Womp womp.

We didn't make gourmet ice pops.

We didn't take an impromptu road trip to some quaint little town.

We didn't have a picnic with a gingham tablecloth, fancy food and real cutlery.

We still haven't seen Hamilton. We haven't even tried.

We didn't deck out our outdoor wicker furniture with colorful new pillows.

We didn't leisurely browse green markets, although once Ben downed two bowlfuls of watermelon from an all-you-can-eat buffet.

We didn't dip Popsicles in Prosecco and have friends over to enjoy them at dusk with lit tiki lights.

We didn't have a single drink with an umbrella in it, come to think of it. Or slurp anything out of a coconut.

We didn't go glamping.

But we did...

...chill on the front porch and back deck, take long walks around our neighborhood, gorge on hot dogs and burgers and corn in the husk, swim in our town pool, run through sprinklers, visit a water park, hit a couple of county fairs, buy lemonade from kids' stands, see Cars 3 (twice), make s'mores, stroll on a boardwalk, ride bumper cars, hike to a waterfall, forget about following any schedule and enjoy all sorts of nontrendy, simple pleasures of summer. And that was plenty good for us.

FYI, spending quality time on your front porch or stoop is now called "porching." Stopppppp.

Tuesday, September 5, 2017

You're never too old to....

"It's for kids," Dave said. That was his response when I asked whether he'd bought a bird-feeding stick for Max. We were inside the aviary of our local zoo, along with 500 parakeets. Visitors can buy feed sticks; Dave had only gotten one for Ben. 

"But Max will want to do this too!" I told Dave. "Right, Max?" Max nodded eagerly. Dave went back to the entrance and got him the feed stick, and we proceeded to walk around and give the birds some lunch. Sabrina was at a party, missing out on all the feathered fun. 

Sometimes, Dave and I are both guilty of thinking of Max is "too old" for certain things—going on kid rides, pushing around his old stroller, wearing his firefighter hat, sitting in the driver's seat and pretending to steer our minivan as it's parked in the driveway. I wish we didn't feel these twinges, but we do. They're irrelevant to Max's well-being.

As Max has taught us from early on in his life, he is on nobody's timeline but his own. That includes his development, along with the things that make him happy. Perhaps he will always find joy in them. Shouldn't that be all that matters? Well, yes...but then there's the part of us concerned about Max's progress and place in this world. And Max's contentment and our anxieties about his future don't always peacefully coexist. 

I have juvenile pleasures, to be sure. A big bowl of Froot Loops with ice-cold whole milk? Yes, please. Popping bubble wrap: bring it! Riding on a ferris wheel, swinging on a swing, drawing my name on a steam-heated mirror, peeling Elmer's Glue off my fingers, hiding under the covers, eating p.b. from the jar: good times. Arron Crascall, not exactly the epitome of sophisticated humor, makes me laugh-cry. What right do I have to question whether Max is too old to enjoy anything?

"OK, I take it back," Dave said as he watched how excited Max was to feed the birds. I loved seeing Max hold his hand up, not a simple move for him. 

Ben was having a blast, too. He and Max had a little competition going about who could attract more birds. Then I caught Ben about to nibble on the bird stick. Time to go see the bears!

I mean, really, who's the one stuck developmentally—Max or me and Dave?! One of these days, we'll stop questioning and accept the truth: what makes you happy makes you happy, period. 

Monday, September 4, 2017

Friday, September 1, 2017

The Disability Blogger Weekend Link-up: long weekend reading right here

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: Disaster relief for children and adults with disabilities

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.

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