Friday, June 29, 2018

The Disability Blogger Weekend Link-up is here to host your posts

FIRST! An announcement!
Because the link-up is all about community, this seems like a great place to announce a new podcast, WhoTF LIVES LIKE THIS?! by two smart, outspoken, funny parents of children with disabilities, Elizabeth and Danny. Topics covered will include healthcare, education, stigma and resources for stamina, and examine what enables caregivers to not just get by by do it with grace (and sanity). Check it out! Here's a teaser.

And now, back to our regularly scheduled sharing program.

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 want to take an Uber, he said

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Wednesday, June 27, 2018

My autistic son's first playdate

This guest post is by Jane Kim, an immigration attorney, writer and mom of a six-year-old with autism. She lives in the Philadelphia suburbs.

As moms, there are many milestones we look forward to when it comes to our kids: first steps, first words, first birthday, first day of preschool and kindergarten. Before I became a mom, I naively assumed these milestones were guaranteed within a certain period of time. But after having a son who is on the autism spectrum, I soon realized that wasn’t always the case. While we are fortunate he has met these milestones, they didn’t come without a fair amount of coaxing and therapist consultation, not to mention a heavy dose of behind-the-scenes anxiety.

As my son approached his sixth birthday (and the daily grind of sleepless nights and the likelihood of falling down the stairs seemed to be in the rearview mirror), I noticed there was something absent from our daily lives: play dates. Friends and colleagues often lamented all the time they spent bringing their children to friends’ homes. “Being my kids’ chauffeur is exhausting!” they’d gripe.

I’d nod along, empathizing with the exhaustion albeit for very different reasons: I’d spent a good part of my son’s early years taking him to therapist and doctor’s appointments while managing a team of therapists. Otherwise, though, I couldn’t relate; my son didn’t have friends. Me, his dad, his two cousins who are close in age to him were his best and only playmates. My own friendships had gotten me through the tough times and made the good times that much sweeter. If my son got a later start than most, would it matter in the end?

So I added “play dates” to my mental list of things to worry about. Some days it never crossed my mind, and others it was front and center. Like when I’d overhear parents referencing past play dates at birthday parties or school events. Or when I’d see a group of neighborhood kids playing outside. Then one day, as I was in my son’s class to attend an Easter Party, I saw a little girl run up to him with her arms outstretched. I was startled; my son was not. They hugged and laughed and the girl’s mother approached me and introduced herself. She said her daughter talked about him a lot, and she wanted to arrange a play date now that the weather was getting nicer. I felt a lump in my throat. We exchanged numbers.

 While I was happy and relieved my son would have his first play date, my anxiety actually increased—I worried he’d be aloof or awkward. My son is a kid that doesn’t necessarily enjoy what most kids enjoy. When he’s hanging with his cousin, who is less than a year older, he sometimes fixates on certain things and has difficulty sitting still. Most of their play dates involve wrestling, swimming and riding things with wheels. But family is different. They accept and embrace your differences and quirks, if you get on each other’s nerves, there’s still love.

To me, the most challenging part of parenting a child on the autism spectrum is that it robs you of some of your intuition, especially in the early years. My gut was telling me the play date would be fine, but I didn’t trust it; it had been weighed down by years of worry and uncertainty.

So I spoke with my son’s behavior analyst, Susan, who is the person in charge of ensuring specific goals and skills are met and acquired based on his individual needs. She comes to our home about once a week, to develop new goals and monitor my son’s progress. She also supervises and works closely with his behavior technician, who sees him much more frequently.

Susan suggested his behavior technician could join the play date and facilitate some of the play. She also offered to facilitate it herself, so the technician could observe and get ideas for future play dates. I did the math: 4 adults, 2 kids. It was starting to feel like less of a play date and more of a therapy session. She told me to think it over and would support whatever decision I made.

I called my older sister, who is blessed with the gift of quick decisions. “Give him a chance to do it alone,” she said. “You’ll be fine.” I thought of the irony of that statement: This wasn’t about me, it was about him. I couldn’t let my fears get in the way. I decided to do a traditional play date, just two parents and two kids.

We decided to meet at a local park on a Wednesday. The day before, the forecast called for rain. I texted the mom and told her we could reschedule to another day if the weather didn’t cooperate. I was starting to get cold feet. To my surprise, she suggested meeting at an indoor play area if it rained. I couldn’t turn back now.

As we got out of the car the next day, I saw them walking towards us. I held my breath. My son greeted his friend with a cheerful hello and a hug. And then, they did what kids do. They played together and they played apart. They laughed a lot and got on each other’s nerves. They had f-u-n. 

The afternoon went by in a blur, and soon it was time to leave. Both kids were sweaty and begged for more time to play. We agreed to meet again, soon. 

And just like that, his first play date was over. Yet another milestone to be celebrated, with one notable difference: he did it on his own.

Jane can be reached at

Tuesday, June 26, 2018

Those times when you wonder: Why does it have to be so hard?

I got Max's final IEP for next year on Friday. It only took two-plus months and ten-plus emails, and all because of one section.

Months ago, I reached the end of my rope about Max's bus ride. He is on the bus to school for about an hour and twenty minutes, and about 40 minutes coming home. We live maybe fifteen minutes away from the school. It's not ideal for Max to have extra sitting time, because his muscles tighten up when he's not moving around and because he gets bored—he is not a kid who's going to turn to another one on the bus and strike up conversation.

Earlier in the year I complained to the bus company, and got nowhere. So I let it go, which is totally unlike me. But there are only so many battles you can fight. Max was the reason I took it up again—he complained the ride was too long. And Max never complains about bus rides.

I took to the blog Facebook page to vent, which is where I learned I could have a shorter bus ride written into his IEP. Yep, it's true. I got a note from Max's neurologist and brought it to the IEP. Our district liaison, who's new to us, is really nice and practical. Boom. Done! Or so I thought.

First, the revised IEP didn't show up. So I called. When I finally got a copy, I immediately checked out the bus mention. It read: "The length of Max's bus ride to/from school should be a reasonable length, accommodating for his short attention span, need for sensory input and kinesthetic movement." Well, nope, "reasonable length" wasn't going to do because it was too subjective and the bus company could very well claim that an hour and twenty minutes was "reasonable." I requested the wording that we'd discussed at the IEP be put in: Max should be one of the last students to get on the bus going to school and one of the first to get off coming home.

So then the revised IEP came back with this sentence: "Max should be one of the last students on the bus and one of the first students off."

Nuh-uh. It needed to specifically say "Max should be one of the last students on the bus in the morning and one of the first students off in the afternoon." Otherwise, again, the bus company could interpret it however they wanted (read: "Max should be one of the last students on the bus in the afternoon and one of the first students off in the morning"). So it got reworded to say that.

And now, the real challenge: making sure our school district is on top of the bus company to implement it. Over the years, I have literally heard from the driver the night before school started to introduce herself and confirm that she'd be picking up Max the next day. Meanwhile, the person in charge of transportation in our district—let's call her J—is pretty unresponsive.

I called yesterday to make sure this won't fall through a crack, and found out that J is on medical leave and S was handling her work. I explained the situation to S, who reassured me she'd stay on top of things.

"I hope so," I said. "J is not so great at getting back to people."

"Well, I'm not J!" she said, and I felt somewhat reassured until she noted, "So he has to be the first on the bus and the last off, right?"

And so, this is why I sometimes find myself thinking: WHY DOES IT HAVE TO BE SO HARD?!

Ya know?

Monday, June 25, 2018

I'm raising a fire truck and a police car

Even before Ben was born, Max informed me that the baby was going to someday be a police officer. That was because Max was the only one in the house who could be a firefighter.

Turns out that Ben has other ideas. He's into fire trucks and Max lets him play with his old ones, a sure sign of maturity. Someone gave me a little firefighter outfit and Ben wore it the other day as he played with Max's collection of pretend extinguishers. (Max has a real one in his room, a birthday present he got one year by request.)

When I asked Ben what he wanted to be when he grew up, he said "fire truck." The fact that it was virtually impossible didn't seem to matter to Max, who insisted "No, Ben, police officer!"

"No, fire truck!" said Ben.

"You mean a firefighter?" I asked.

"No, fire truck!" he repeated.

"And what do you want Max to be when he grows up?" I asked Ben.

"Police car!" he said.

So, there you go. I am raising a fire truck and a police car.

Friday, June 22, 2018

The Disability Blogger Weekend Link-up wants you!

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: Does equal treatment of people with intellectual disability mean slamming them on Facebook?

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, June 21, 2018

I want to take an Uber, he said

"I want to wear sandals," Max told me over the weekend. He was gearing up for an after-school trip yesterday to see Incredibles 2 (this was for the third tie) and have pizza.

Max typically wears his foot braces on weekdays; on weekends, he wears sneakers or sandals.

"Sure!" I said.

And then, he announced that he did not want to take his usual backpack to school. It's a rolling kind that says Fireman Max on it in red letters. He wanted to take a backpack I had once gotten at an event, one with padded shoulder straps could carry on his back.

And now, it was beginning to occur to me: He did not want to stand out from his peers at school. Max's high school has a lot of students with Down syndrome. They don't wear foot braces. Most do not use iPads for communication or use wheeled backpacks.

"Yes, I'll get out that backpack and you can wear it to school on Wednesday," I told him.

Yesterday morning, as I was getting ready for work, he had another request: He wanted to take an Uber.

"You mean you want to take an Uber home from school?" I confirmed.

Yes, he did.

"Max, I don't think you're ready to take an Uber alone yet," I said.

"I'm big!" he replied.

And yes, he is big. And yes, I am trying to enable independence. But I don't think he's ready to ride alone in a car with a stranger.

"Maybe you and Daddy can take an Uber ride to New York City one day," I said.

He seemed somewhat satisfied with that answer, but I knew he was hoping for more. Later, I was googling and found HopSkipDrive, a new ride service for kids that's staffed by experienced caregivers. It's only in parts of California and Denver right now, but if it expands it could be a good way to let Max take a joy ride on his own.

I picked Max up at school early evening. I found him sitting at a table in the cafeteria with a few classmates, shoveling pizza into his mouth. I walked up to him and said hi.

"Go away!" he said, smiling.


As we headed toward the front door, Max stopped and ducked into the auditorium. He had remembered to get his backpack, not me.

Wednesday, June 20, 2018

The blood test that may predict cerebral palsy in babies

I couldn't click fast enough when the news came up in my Google alerts—it seemed unbelievable. Scientists at the Children's Hospital of Chicago have demonstrated that it's possible to screen early markers of cerebral palsy in preemies through a simple blood test.

The scientists found that a kind of molecules called microRNAs are changed in babies who develop abnormal muscle tone. Looking for these microRNAs in preemies—who are at risk for cerebral palsy—could help them get the therapy they need early on. The results of the research were published in the journal Physical Medicine and Rehabilitation—International.

"If our promising results are confirmed in larger, multicenter studies, screening preemies for microRNA biomarkers shortly after birth could allow intervention before cerebral palsy manifests, typically at 18 months to 2 years of age," says senior author Maria Dizon, MD, a neonatologist. "With earlier diagnosis and therapy, the chances of achieving better motor function are greater since the central nervous system is most plastic in infants."

I know this well from Max. The stroke he had at birth put him at risk for cerebral palsy. The famous pediatric neurologist who consulted with us told us to get him therapy galore, and we did. We tried traditional ones—PT, OT, speech, aquatic therapy—along with craniosacral therapy and hyperbaric oxygen treatment. At six years old, Max got a stem cell transplant. Our motto: If it couldn't hurt him and it might help, we'd try it. He's doing pretty well for himself, likely due to a combination of the therapies and good old luck.

When I write about things like this, I think of adults with CP I've met online. Some resist the thought of preventing or curing CP; they own theirs and consider CP an integral part of who they are, in the same way that I hope Max does someday. I  know now that cerebral palsy is not some grim life sentence: Max has a good life with his cerebral palsy, not in spite of it. Yet as his mom, I have been driven since the day we found out he had a stroke to help him the best I can. If I can make his muscles move easier, if I can get him to him to trip less, if I can help him articulate the words he so badly wants to say, I will. And if when he was born I had been in a situation where a blood test for CP might have benefitted his future, I would have been grateful for it.

I so hope preemies will benefit from this groundbreaking research.

Image: Flickr/Magic Robots

Tuesday, June 19, 2018

Does equal treatment of people with intellectual disability mean slamming them on Facebook?

The woman posted the seemingly innocent comment in our local Facebook group: Wouldn't it be great if a Cracker Barrel opened in our area? It would bring in business. She asked what others thought.

Cracker Barrel is pretty divisive because of its history of discrimination, and the fact that some consider its food gross. Group members did not hold back. Among the more tame comments:
"Yuck" and "A vomitorium of yucks" and "Is this a joke?" and "Booo." There was snark: "How about they open a strip club called The Chick Barrel?" and "Ha! Hahaha! HAHAHAHAHAHAHA!!!!" and "How does admin even allow this obscene post?" And there was annoyance: "Ewww the suggestion itself is disgusting" and "This may be the worst idea since an unnamed politician tried to put up a KFC."

Some people were for the idea. A few suggested an alternate, more commercialized location. Yet others were more interested in bringing a Waffle House to town. As is typical on Facebook, people spoke up bluntly.

The woman's Facebook photo looked vaguely familiar. I checked out a few posts on her page and sure enough, I'd met her at a fair. She has mild intellectual disability.

I felt a flash of anger toward the people who were ripping apart her suggestion. I tagged her in a comment, telling her that I understood liking that food (their biscuits are tasty) and that she probably wasn't aware of their history of discrimination. I suggested a good local Southern place.

Still, I bristled. I wanted the group to know that they were dealing with a person with ID, and that they shouldn't go off on her.

The post racked up 198 comments, including a followup from the woman. "Never knew about the discrimination they have," she wrote.

I went to sleep all riled up. Then it occurred to me: If people had treated her gingerly and refrained from being their usual opinionated/obnoxious selves, then she wouldn't have been treated like an equal.

I wondered if this woman felt taken aback or offended. I hoped that she was used to how things went in the group, and that she knew it was just business as usual. I thought about Max. He may require special accommodations at times, but in general, I want him treated the same as other people, sans the kid gloves. That would mean, in essence, that when and if he is ready to post his opinions in such a group, he'd need to be prepared for people's assorted reactions.

For now, I would not subject Max to online communities, unless I found ones with other teens who have intellectual disability. I let Max make as many decisions as possible, but as his parent, I know this is the right Internet security for him. If he were in some sort of teen group with typically developing peers and he posted something like "I love fire trucks!" I can easily see him getting flamed. The relative anonymity of these groups means that people do not know who they are interacting with, a negative for a teen like Max.

But if someday he is ready to face the opinionated masses on Facebook or the social media of his choice, well, I'll be all for it.

Monday, June 18, 2018

There is no age limit on pretend play

Two of my children were driving the other day. Max was steering the minivan as Ben maneuvered a pirate ship in our foyer. They're thirteen years apart and yet, pretend play is important for both of them.

Max has been driveway driving for years now. Sometimes, I sit in the passenger seat and he takes me to pretend places. His destination of choice is always Orlando, where he plans to move to. (I don't consider his constant discussions about moving there imaginative, because he has pretty much convinced himself that he is going to live there.) Another favorite play activity: listening to fire truck videos on YouTube and making a siren sound along with them. Several years ago, one of Max's occupational therapists used to engage him during sessions by getting him to put out fires.

Ben likes to lie on floor and roll around his pirate ship, his toy trucks and cars, water bottles, whatever. He does this at home, and at restaurants we're at, too. "Here comes the tunnel!" he'll proclaim. "Beep! Beep! I'm coming!"

Experts say imaginative play is a critical part of child development. It enhances thinking skills and creativity. It can increase language usage. When children use toys for scenarios involving other people, it can help boost communication, problem solving and empathy. Pretend play also builds confidence because children discover they can be who they want to be and do what they want to do just by pretending.

At fifteen years old, Max is still developing, and pretend play is as good for him as it is for his little brother. I realize that most boys his age are gearing up to get a driver learner's permit. I'm not sure if driving is in the cards for Max. But when he's behind the wheel in our driveway, he is in control and loving life.

Friday, June 15, 2018

The Disability Blogger Weekend Link-up means it's time to 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: The invisible labor dads of children with disabilities do

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, June 14, 2018

The invisible labor dads of children with disabilities do

Moms tend to take credit for a whole lot. This is because we do a lot. Me, I am the person who basically keeps our household running, who clothes our children and schedules their appointments, activities and carpools, who organizes their school stuff and so much more, as I detailed last Mother's Day. Research, in fact, found that women handle the bulk of intellectual, mental and emotional labor of childcare and household maintenance—so-called invisible labor.

Of course, this isn't true of all parents—especially those who are raising children with disabilities. Dave and I are equally likely to pitch in with the physical, emotional, social and mental care of Max. And I will admit that Dave doesn't always get full credit from me, or society, for all that he does as the father of a son with disabilities.

Dave may not know Max's shoe size, but he is there to slip Max's orthotics on his feet in the morning. Dave may not know all the teachers' names, but he is always there to work with Max on writing up his weekend news report. He may not notice when Max is almost out of toothpaste or shampoo, but he helps with showering. This, too, is invisible labor. Where's the documented proof of that?

And then, there are the unique responsibilities that come with raising a child who has intellectual disabilities or autism. This can involve anything from listening to a child perseverate on a topic; indulging fixations with Minecraft, car washes, fire trucks, trains, traffic lights, bus timetables or just about anything; and generally catering to that child's unique psychological makeup.

Keeping children with disabilities calm, content, comforted, occupied and happy is a unique kind of mental and emotional care—one that our culture largely fails to acknowledge dads do. 

In our family,  there is one significant responsibility that Dave handles weekly: a trip to Home Depot to shop for the fantasy house Max wants to buy.

When we visited Jamaica in December, Max got it into his head that he was moving there. Once we returned from our trip, he found a beautiful house online that he informed us he was moving to. Then he and Dave went on an errand to Home Depot one weekend, and Max decided to pick out appliances for his fancy new house. After that, Max wanted to visit Home Depot every single week.

Although Max has recently changed his fantasy destination to Orlando, Florida, his HD visits remain the same. First, he grabs one of those carts that looks like a car and pushes it over to Appliances. He gazes fondly upon his objects of desire, including a Samsung refrigerator with a screen that shows the interior of the fridge and a Whirlpool microwave. He hits the flooring department to ogle dark brown tile that looks like wood. He hasn't yet decided on cabinetry or a washer/dryer (tough choices, to be sure). He notes that he is going to need a very large moving truck, as evidently he would like to support our local Home Depot and stock up his future Florida home there.

Dave typically takes Max to HD on Sunday evening, after the two of them put out the recycling. Sometimes, Ben comes along. It's never me that Max wants, just Dave. Are there any other number of things Dave would rather be doing than wandering around the appliance area? Um, yeah. But he knows that Max loves these trips. And so, week after week, he heads to Home Depot, without complaint.

I may keep up with a whole lot of to-dos, yet Dave puts a lot of time and effort into an equally important one: keeping Max happy, whether he's taking him to Home Depot, playing kickball in our backyard, unrolling the avocado roll at the sushi restaurant and mashing it up so Max can eat it, letting Max sit in his car and pretend to drive it or typing up a list on Max's iPad of what he'll do at Disney World when he hopefully-soon-pretty-please gets to go there again. Keeping our children happy is, perhaps, the ultimate to-do. It's a form of labor invisible to most everyone but me (and the Sunday staff at Home Depot).

In absence of a Father's Day card that reads, "I love you for taking our son on joy trips to Home Depot every single week," I'll just proclaim my appreciation. Here's to you, love, and all the dads out there for all that you do for our children. Maybe we moms don't say it enough, if ever. Perhaps we get on your case too much about not putting your dirty clothes in the hamper or leaving empty milk cartons in the fridge. But we appreciate you. We need you. Our children need you. And we are all are so very lucky to have you.

Wednesday, June 13, 2018

On trying to be a superhero to your children: Max sees Incredibles 2

I am a crappy mother. Why? Because I insisted that Max see a screening of Incredibles 2, even though he resisted. Only now he's saying it's his new favorite movie.

Like me, Max loved The Incredibles. He's been watching sneak peeks of Incredibles 2 since the official trailer came out on YouTube in April, and literally counting down the days till its opening this Friday. And so, last month I reached out to a contact at Disney•Pixar I'd met years ago at a conference, and asked if there might be a screening we could attend. There was—on Monday.

I was gleeful when I announced this to Max.

"No!" said he.


"Max, don't you want to see Incredibles 2 first, before everyone else?"

"I said no!" 

The thing is, Max had his own plans to see it. He was going to head to New York City, sleep over at my sister's house and hit the theater with her and my niece. And when his school offered an afternoon trip to see it next week, Max wanted to sign up for that, too. So in his head, he was already set. And my exciting offer to see it in preview just wasn't so exciting for him, although Sabrina was seriously psyched. 

You'd think I'd know better by know than to project my own idea of fun onto Max. A preview! Of a major movie! How could he resist?! Sometimes, though, you get so excited by the idea of surprising your children that you push reality aside. And the reality of how Max's brain usually works is this: he creates plans, then sticks with them. And seeing the movie before it opened wasn't part of his plan.

I kept asking Max if he was sure he didn't want to go. He didn't. I was bummed. Lately, though, Max's mindset has become a little more flexible. I wondered whether he would change his tune, and sure enough, last weekend he did. Y-e-s, he wanted to go.

And off we went on Monday night to an AMC 30 minutes away. Max wanted to sit next to Sabrina, not me (#teen). He giggled throughout the movie, especially in scenes involving Jack-Jack; the baby reminded us all of Ben (well, other than his ability to transform himself into a fireball). When the family got a new place, Max leaned over excitedly to say "They moved!" because he wants to move (to Orlando).

The plot was amusing, clever and grip-your-seat thrilling. The characters were funny and relatable. Helen Elastigirl Parr was her usual feisty self. Bob Mr. Incredible Parr took a turn as a pooped out stay-at-home dad when Helen got an Elastigirl gig. (Sabrina and I both poked each other when, as Bob struggled to help son Dash with homework, he griped about how math isn't done like it used to be—that's our story, too.) Frozone was around, with his off-the-camera wife giving him her usual earful. My favorite character, Edna Mode, babysat Jack-Jack and made him a cool costume. Together, the family fought evil, continuously sparring over who should hold Jack-Jack as they zoomed around.

When the movie ended—and it was so good none of us wanted it to end—Max reminded me that he was going to see it two more times! In the car ride on the way home, he and Sabrina named their superpowers. Max said he was strong. Sabrina said she could text with amazing speed. I decided to not ask what they thought mine was, because Sabrina would have surely said "nagging."

We talked about what happened in the movie, and Max kept saying a word I didn't understand. Then I got it. Some people in the movie (non-spoiler alert) had come under a spell, and Max was saying they'd gotten sick and then better. That was his understanding, and that's the magic of movies like this: they can work on many levels. Then Max again pointed out that the family had moved to a really big new house, and he was also going to move to a big house in Orlando, and he threw up his arms for emphasis.

"Good movie!" Max said. He again noted he'd be seeing it two more times.

"Aren't you glad I kept asking you to go?" I asked.

"Yeah!" he said.

And I felt super-satisfied.

Image source: Pixar

Tuesday, June 12, 2018

Including children with disabilities: This teacher hiked with her student on her back

How to enable a little girl with cerebral palsy to participate in her class's two-day camping trip? Chicago special ed teacher Helma Wardenaar was determined to find a way and boy, did she ever.

She'd been working with Maggie since kindergarten, reports ABC 13 News. Maggie uses a walker or a wheelchair, neither of which was a realistic option for hiking. "We thought it was super important for her to be there and be able to do everything the other students were doing," said Helma, director of student services at the Academy for Global Citizenship.

Helma set her mind to figuring out a solution. She considered borrowing a friend's pony for Maggie, but was told they weren't allowed in the forest. She checked out backpack and carrier options at REI, but found no good options. A wheelbarrow? Nope, not sturdy enough.

Then she got a call back from the REI staffer, who'd found a new backpack-like carrier called the Freeloader, which holds children between 25 and 80 pounds. Lacking a school budget for such things, Helma paid for one out of her own pocket. And then, she toted Maggie around on the trip as the class did the sort of stuff kids do on hikes: identify birds, check out animal tracks and look for beaver dams.

Carrying around a 62-pound child on trails is no mean feat, but Maggie helped. "When she noticed I was huffing and puffing, she even gave me a little massage on my neck," said Helma. "Then she started singing as a distraction."

We've all met teachers who have gone above and beyond, but this one's willingness, determination and selflessness stand out. Too often, our children with disabilities aren't able to participate in events and activities because people can't envision a way to include them—or aren't willing to. Inclusion is half mindset, half figuring out the logistics. Here's to teachers who make things happen for our children. Helma Wardenaar, the world needs more people like you.

Image: ABC 13 video

Monday, June 11, 2018

Living his best life

When Max was a newborn, his neurologist told us to expose him to as expose him to as many experiences as possible to help expand his mind. This was challenging when he was little, because his sensory issues made him afraid of crowds, noise and new places. Yesterday, it was clear just how far Max has come. 

All morning, he kept saying he wanted to go to New York City. On his wish list: a visit to a fire station, and steak. His usual preference is Dave for these joy trips, but Dave was zonked. So: Mommy and me it was. I booked a reservation at a steakhouse and off we went. The train ride there alone was a thrill.

Max was in charge the second we stepped foot in Manhattan. He directed us to the local fire station, where we met Firefighter James. When he asked me how old Max was, I said, "Ask him!" and he did. Max made conversation: He noted his plans to move to Orlando, because Disney World is there. He asked James if he'd been to Disney World. He asked if there had been any fires that day. 

After Max and I walked a few blocks, he asked to take the bus uptown. I hadn't realized that the Puerto Rican Day Parade was happening, and when our bus got rerouted we got off to check it out. But first, Max spotted a few fire trucks on a street investigating a smoke situation. Bonus!  

As we watched the parade, Max waved at the people on the floats. He asked if he could be in the parade, and I said those people had permission. He accepted that, notable for the lack of resistance. 

Meanwhile, Max decided he needed a haircut before his steak extravaganza, so I googled a barber shop by the restaurant. We took a taxi there (Max hailed it), and he sat still for the better part of a half hour as the stylist lopped off his mop. This, too, was major progress—haircuts used to make him wail. 

Max looked pretty suave when we arrived at the restaurant. He ordered creamed spinach and mashed potatoes with his steak. I cut it up into pieces and he dug in, happily. We chatted about the end of school and summer. "When You Wish Upon a Star" came on the instrumental music playing in the background, and his face lit up. Then the waiter gave me a glass of Pinot Grigio on the house. Bonus!

It was a great day, and not because of any planning I did—it was all Max. As is often the case, there was an extra layer of awesomeness because I was so aware of Max's progress and maturity. 

As we walked around, I'd held onto his arm, in part because I wanted to make sure he didn't trip. He's pretty steady on his feet but uneven pavement can mess up his balance. At some point, Max broke free. "No, thanks!" he said. And we walked on, just any mom and teen enjoying a day together.

Friday, June 8, 2018

The Disability Blogger Weekend Link-up: Join the crowd

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: There's nobody missing from this prom photo

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, June 7, 2018

A student with autism couldn't attend graduation, so they brought graduation to him

High school senior Jordan Smith was ready to graduate from Spalding High School in Griffin, Georgia. Because he has autism and sensory issues, and crowds and loud noises freak him out, his family decided he should skip the ceremony, reports the Atlanta Journal Constitution. But his teacher, Dana Jett, had other ideas: She organized a private ceremony for him. As she said, "Jordan's effort, hard work and perseverance are worthy of recognition."

As a parent of a child with sensory issues, I was touched by what this teacher did for her student. As a parent of a young adult, I also hope she OK'd it with him and involved him in the planning. Otherwise, this ceremony would have only had meaning to the people who put it together, pretty much defeating the seeming purpose of it. That's not accommodating, it's exclusionary.

Max has been the beneficiary of much goodwill over the years. But as he's getting older, I've become aware that he should have a say in how he is treated in matters big and small. Last week, before prom, a nurse at his school emailed me telling to send in Max's adaptive cup and utensils. Pretty standard. I asked Max if that's what he wanted; he can drink out of standard cups and use standard spoons and forks, and I thought that he might just want to do that at prom. He did want to bring in a paper cup, but he wanted to use the utensils there. This wasn't such a big deal, but that didn't matter; he deserved to decide.

Me, I've struggle with well-meaning gestures, like when that woman at Dunkin Donuts gave him free donuts. I don't want people to do things out of Max's disabilities, because they are not to be pitied. But, heck, if he himself makes a conscientious decision to take those donuts, fine. And if he's offered an accommodation but would rather do his own thing in his own way, even better.

Image: Screenshot/YouTube

Wednesday, June 6, 2018

Time is measured in holidays, birthdays and contact lenses

"The days are slow, the years are fast" is one of my favorite book lines ever, from Gretchin Rubin's The Happiness Project. It is so true. The kids' birthdays and holidays make me particularly aware of how quickly they're growing up. Facebook flashbacks, too. With Max, comments from people who haven't seen him in a while make me aware of his development; the consensus is that his speech is getting easier to understand.

And then, there are my contact lenses, the most regular marker of just how fast life goes by. They come 30 to a box. And every single time the box runs empty, I can't believe another month has passed. Wasn't I just grabbing another box yesterday from the closet and putting it beneath the sink?

Women with adult children like to tell me, "Someday, you're going to miss these days!" I get that. I love raising children. (Um, most days?) I love the family life we have. But then, it's hard to imagine I'll ever miss the whirlwind of to-dos, chores, tasks, appointments and staying on top of everyone and everything (see: I am the person who notices we are running out of toilet paper, and I rock). Someone should invent an app that automatically keeps track of all the stuff moms do in a given day so we could hold it up to our darlings and say "SEE?!"

Ironically, keeping up with family duties at times also means I get too busy or distracted to fully savor them. And suddenly, there I am again, breaking open another box of contact lenses. Sabrina is looking more and more like a young adult. Ben is asserting himself in all sorts of new ways. ("No bedtime! I sleep already!") Max has moved on from YouTube fire truck videos to ones of people loading moving trucks (he plans to move to Orlando just as soon as possible).

I haven't found any magic solution to slowing life down. There's definitely no app for that. What does help is conscientiously making myself be present. No thinking about what I have to get done that morning/afternoon/night. No checking email or Insta. Just being in the moment, what shrinks refer to as "mindfulness." It's the core of meditation (something I've always sucked at) but I've found that if I don't put pressure on myself to do it, it happens. Because the last thing I need is another to-do.

Last night, Sabrina, Max and Ben were on the couch, shoving each other and trying to claim their territory. It was hardly a special moment and yet, it became one. Because as I sat there watching them I started thinking how great it was that they more or less got along and how cute they all looked and how happy they were and how lucky I was to have them. And just for a few minutes, time stood still.

Tuesday, June 5, 2018

When do you help your child with disabilities interact with other children?

We were at a jam-packed barbecue on the weekend with kids of all ages running around. Some were jumping on pogo stocks. Ben and his little buddies were all over the climbing gym. A few kids were playing with a red wagon on the driveway, and Max got it into his head that he was going to pull a bunch of them around.

One of the kid looked at Max, said "Uh-uh" and jumped out. That left two boys. They looked to be about 8 years old. Max was having trouble moving the wagon off the embankment it was on, and I was worried that the cart was going to overturn. I'd been standing in the background, watching from behind a gate, but I jumped forward and said, "Here, Max, I'll help."

I hadn't wanted to get involved. I wanted Max to interact with these children on his own. As soon as I pulled the wagon forward, I walked back to the gate. But as I watched Max pull the wagon, struggling hard, it started sliding down an incline leading to the road. I didn't want it to go zooming into the street so again, I dashed out of the gate and ran down to stop the cart.

"Maybe this isn't a great way to play, and there's something else you guys can do!" I said. But the two boys climbed out and walked away, leaving me standing there with Max. He said, "Awwww."

I felt awful. And helpless; what should I have done? I wanted Max to be independent, but I didn't want to risk those kids getting hurt. Of course, children playing together unattended can (and do) get their fare share of boo-boos—I just wanted to make sure my teen wouldn't be the cause of that.

Max doesn't often hang with peers his age who don't have disabilities. At gatherings like this, he tends to gravitate toward younger children, who sometimes don't know what to make of him. At our recent neighborhood block party, Max and I met a little boy.

"Why does he talk like that?" he asked as Max stood there.

"People talk in different ways, and that's Max's way of talking—right, Max?" I said. And to the boy: "He does understand what you're saying." Max is nonchalant about exchanges like this. I do my best to facilitate, so that Max is included in the conversation and the child can begin to get to know Max.

Yet conversations are one thing; playing is another. Trying to look-after-but-not-look-like-I'm looking-after Max as he plays with younger children is tricky.

That day at the barbecue, I told Max that maybe he could pull Ben around the wagon. Ben refused to leave the climbing gym but the next day, after I got home from work, we took Ben out in his little car and Max did the pushing. It wasn't the answer I was looking for, but he enjoyed it.

Image: Flickr/James M. Turley

Monday, June 4, 2018

There's nobody missing from this prom photo

Friday night was Max's first prom. He'd been looking forward to it for weeks. "ROM!" he called it (he can't yet say "p's.") The plan was for me to drive him there, walk him in, then leave.

I took a few photos before we left. As Max stood in front of the stairs, they suddenly seemed a little empty. His suit lapel looked a little bare without a corsage pinned to it. Max doesn't know that people take dates to proms, and he didn't seem to care. Me, I get a little melancholy at life milestone moments like these. I rarely have those what-if pangs anymore—as in, what if Max didn't have intellectual disability. But standing in front of the house on prom night and taking photos of him looking so handsome and alone gave me pause.

My head knows not to feel sad that Max doesn't fit into the cultural norms: he has a good life, he is happy, he is content with who he is. My heart, not so much.

When we pulled up to the catering hall, Max spotted his friend J and squealed. I let him out of the car and he ran over and gave her a hug. I parked and found him inside, giving people high-fives left and right. "Are you Max's mom?" two boys asked, and suddenly I understood how celeb handlers felt.

I asked Max to take a photo in front of the Hollywood themed step-and-repeat. A classmate wanted to be in one with him. Right before I took the photo, she kissed his cheek. Max cracked up.

"Did you just kiss Max?!" his teacher asked. Yep, she had. What happens at prom stays at prom!

Then another student approached. "I want to take a picture with Max!" he declared.

Max settled down at the table with his classmates. A waiter set a plate of salad down at his place. I was about to say "He doesn't eat salad!" but I held back. Who wants their mom sending back food at prom?!

I waved goodbye, then hovered outside. I asked a server what was on the menu and she mentioned turkey and roast beef. I requested pasta for Max, since he can't chew that stuff. The principal walked by. "Don't worry, it's a buffet, there's pasta there!" she said. "He'll be fine."

The night ended at 10:30, which is late for Max; he usually crashes around 8. I got there at 10:15 and the principal and assistant principal were sitting outside the room.

"He had the best time!" she told me. I walked in and found Max rocking out on the dance floor, a yellow lei around his neck. He didn't want to leave.

And that was prom, a night filled with friends and fun. It was Max's idea of a great time. And really, that was all that mattered.

Friday, June 1, 2018

The Disability Blogger Weekend Link-up: your posts with the mosts

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: Working moms of children with disabilities and guilt: group therapy

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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