Friday, February 21, 2020

The Disability Blogger Weekend Link-up: no political drama here!

What to do if you're new  

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

Like this: Meet the grandma building accessible ramps out of Legos

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, February 20, 2020

Meet the grandma building accessible ramps out of Legos

Motherhood is the necessity of invention, the saying goes, but it also holds true for people with disabilities, who have to be resourceful in the face of access obstacles. Meet Lego Grandma, aka Rita Ebel, a 62-year-old woman living in Hanau, Germany, who uses a wheelchair. She got frustrated with the lack of accessible businesses in her town. So she started building mini ramps made entirely out of donated Legos, glued together onto large Lego baseplates.

There are now twelve of these colorful ramps in her town, and she's been sending building instructions to Austria and Switzerland, reports Reuters. Says Rita, "For me, it is just about trying to sensitize the world a little bit to barrier-free travel."

Image: Screen grab/Reuters video

Wednesday, February 19, 2020

Disney theme parks head to trial over accessibility

Five years ago, Disney theme parks changed their policy toward people with disability and access to rides and attractions. This was mainly due to abuse of the passes that allowed people with disabilities to move to the front of the line (scams included families hiring tour guides who had disability passes). Instead, Disney instituted the Disability Access Service Card system. We've used it a couple of times, most recently during our trip to Disneyland in December. Basically, you go to a kiosk and they give you a designated time to get on a ride. Once you arrive, you enter through the FastPass entrance or the accessible one. Sometimes this still involved waiting in a line, although Max tolerated it OK.

The new system upset a lot of parents and people with disabilities, including an autistic man in Orange County, Florida known as "A.L." who five years ago filed a lawsuit against Disney. The trial finally started yesterday, reports Disability Scoop, and is scheduled to last until the end of the week. The lawyer represents other families in Florida and California who've filed similar lawsuits.

Assigning people a time to go on a ride is a problem, the lawsuit notes, because not having a definitive schedule can cause stress and meltdowns for people with autism. A.L. had a very specific routine at the Magic Kingdom, per the Orlando Sentinel, one that may be familiar to parents of children with autism—he traveled "in only one direction, stopping at only the same places, in the same order, every time."

While the lawsuit is focused on individuals with autism, a reserved wait time can be an issue for any child with sensory issues or physical challenges. Max's sensory issues have largely subsided but when he was younger, it was impossible to know for sure what rides he would and wouldn't go on. He'd say OK, but then freak out when we got to the ride we were signed up for. Traipsing around made him get even more tired—for a child with cerebral palsy who can walk, theme parks can be especially exhausting. We've often ended up getting Max a wheelchair.

The stress and strenuousness of theme park visits for families of kids with disabilities is hard for some people to understand. Yes, these places are magical to our children of all ages and of course, they do want to be there. They've dreamed of it. But the physical and psychological realities of navigating the parks are part of the deal. Standing around in the hot sun while your child cries and screeches inconsolably as people around you gape makes it the unhappiest place on earth.

If Disney loses the lawsuit, people with disability access passes will once again be directed to the front of the line. Which is only right and fair. The truth is, unethical people will abuse the disability pass system in whatever form it exists. Making entrances to rides and attractions as simple as possible for people with disabilities should be the bottom line. Accessibility wins.

Tuesday, February 18, 2020

The mayor of the cruise ship

"Max is the mayor of the ship," Dave reported to me. He and Max are on their third day of a Carnival Cruise, headed to Ensenada, Mexico.

Max has winter break this week, Sabrina and Ben don't. Dave had some work to do in Los Angeles, where Max dreams of moving. Dave had air miles. Five-day Carnival cruises departing from L.A. are a very good deal. Max loves California. Max loves cruises. And so, a plan was born.

I had coronavirus paranoia, given how quickly anything can spread on a cruise ship (and as the Diamond Princess ship saga has confirmed). Dave got notice that the ship was checking passports to make sure nobody was coming onboard who'd traveled in China. That wasn't totally reassuring, but he felt OK about the trip so I repressed my paranoia. Kinda. [Excuse me while I google cruise ships and coronavirus for the bazillionth time.]

Max has been on a bunch of cruises and from the minute he got onboard, he knew just what to do. He and Dave immediately had a steak lunch at a restaurant. He danced at the sail-off party. He hit the teen club. He made himself pancakes and an omelet at the buffet. They visited Catalina Island and rented a golf cart, Max's favorite mode of transportation.

Dave told me yesterday that when he and Max were walking around the ship, crew members were saying hello to him left and right. This always happens when we go on cruises, and it reminds me what an asset Max's charisma is. Same goes for school visits. Dave has also called Max "The mayor of the school" because whenever Dave has visited, he's noticed that everyone who passes by says hello to Max.

I'm well aware of Max's charms, but seeing just how much people connect with him helps soothe that ever-present worry bubbling in the back of my brain: How will he function as an adult? What kind of work will he do? His good cheer will serve him well, no matter what. Actually, he'd be great on a cruise's social team. Or who knows, maybe years from now he'll be another old dude who lives on a cruise.

Max has been texting me that he wants to go on another cruise next February. He says he wants to show me, Ben and Sabrina the cruise. Isn't he nice?

Friday, February 14, 2020

The Disability Blogger Weekend Link-up: Long weekend edition

What to do if you're new  

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

Like this: Juggling your child with disabilities and your other kids, too

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, February 13, 2020

When you and your partner disagree about disability

Every family has phrases that are on auto-play. Ones heard frequently at our house include "Get off your phone, now!" and "What's that smell?" and "Can we order in dinner tonight?" and "Thumbs, Max, thumbs!"

The latter is a reminder to Max to stop tucking his thumbs into his fist, otherwise known as "cortical thumb" or "clasped thumb." This is how his hands often look in repose, unless he makes a conscientious effort to relax his fingers. Dave is always the one to say "Thumbs, Max, thumbs!" Me, I don't bother.

For years, Max wore Benik neoprene hand splints to keep his thumbs open and unfisted. While they did the job, when he got older he wasn't into them and we didn't force them on him.When Max needs to open his fingers—to grasp a pencil, to pick up a spoon—he does. I am grateful that he has the ability to do that. It took years of determination and occupational therapy sessions for him to have some control over his hands. When you have cerebral palsy, your brain can have trouble sending movement signals to your muscles.

Dave notices the thumbs. "I just want his thumbs to be straight," he'll say, by way of explanation. I think part of him doesn't want Max to look different, although it's not like Dave doesn't accept Max for who he is. He is Max's best friend in the whole wide world, and the two of them are always out "galavanting," as Dave likes to say, whether they're getting foot massages or trying a new dim sum place. Dave is the one who brings Max to Home Depot to roam around. Next week, Dave has work to do in Los Angeles and Max has winter break, so Dave cashed in air miles and the two of them are headed there.

I've never said anything to Dave about his "thumbs, Max, thumbs" prompts, so we basically have a passive disagreement about this. We are generally on the same page about parenting and helping Max physically progress. From the start, we were determined to get him as much therapy as possible, to do exercises with him at home (er, mostly), to try alternative therapies and treatments (Max got stem cell therapy when he was six), to find gadgets that would enable him whether it was a gripper for our phone at home or cups with handles he can grasp. We're gleeful about his achievements, whether he's opening the car door on his own or tossing a basketball.

There's not much we nudge Max about in terms of his physical movements these days—mostly, we're working on standing upright when he climbs our stairs rather than clambering up on his hands and knees and encouraging him to dress himself as best he can. So if Dave wants to remind him to relax his thumbs, that's cool with me. It doesn't seem to bug Max.

Years ago, Dave and I were both obsessed with Max's hands. I remember going to the mall when Max was an infant and checking out the hands of every single baby we passed. Were their little hands fisted, like his were? We knew that spasticity was a sign of cerebral palsy, and we were scared that Max would be diagnosed with it. We got excited—yes, excited—when we spotted babies with fisted hands. But infants do that, and grow out of it. Max never did.

If only we'd known then that CP would not define Max. Yes, it can limit his movements, but he has  workarounds along with a "whatever I can do, I can do" attitude. He functions in his own way.

When Dave asks, Max unclasps his thumbs. And then, when Max isn't thinking about it, the spasticity kicks in again and they'll move back inside his fists. He's comfortable that way. He loosens up his thumbs as is necessary. Maybe someday he'll be more aware of his thumbs and care. But for now, he doesn't. And that's just the way it is.

Wednesday, February 12, 2020

You never know how your child or you will influence people

Yesterday, my friend Wendy's oldest daughter got into the Deaf Studies program at Boston University. I've known Skylar her entire life, and I was so proud of her. Skylar has known Max her entire life, and I thought about the influence he's had on her.

Skylar did not know what to make of Max when she was little. This was typical of most kids—they couldn't figure out why someone around their age wasn't talking or acting like they did. But over the years, Skylar came to see that Max was in many ways a child like any other, just one who needed some support. His disabilities were one part of who he was. He had a personality. He had passions. He was cool.

These are things that our entire circle of friends, family and neighbors has come to understand. Sometimes, it just takes one person with disabilities to help people get it. I didn't have that person in my life until I had Max. But Skylar did. More than one—the cantor at her synagogue has a son who's deaf, and Skylar got interested in learning sign language. And now, she's going to school to specialize in it.

I was talking with Wendy as I walked home from work last night, and we chatted about Max and Skylar. Wendy noted that Skylar reads this blog, and has been inspired by how I've advocated for Max. That got me thinking about how it's not just our children who can make an impact on other people. Social media influencers might be a big deal these days, but we parents are the real-life influencers who make people understand that we love our children with disabilities as much as any of our children. We help people see our children's strengths and talents and wonders. We make it clear that our children deserve to be enabled and included in every which way.

You don't need to have a blog or be on Facebook or Instagram to this. The people you know are learning from you all the time. No pressure! You are showing them the way without trying, in ways you've probably never even realized. Maybe not your Aunt Edna who thinks your child is a "brat" or that "he'll get over it" but lots and lots of other people. You are making them see that even if you've struggled with a diagnosis, your child is no tragedy. Your child is your awesome child and you are their no-stopping-them mom or dad. You are enabling them to rethink dated or clich├ęd perceptions of disability, and see children and adults with disabilities through new eyes.

You never do know whose life you will change. Remember that, Skylar.

Tuesday, February 11, 2020

The things you see in photos that other people don't

This is a photo of Max and a pal at the Night to Shine prom.

Maybe other people would look at this photo and see two happy teens.

I see that, too.

Here's what I also see:

I see these boys looking like any cute boys at any prom.

I see friendship.

I see maturity and independence.

I see Max flashing a peace sign, a gesture he picked up from a peer—not from me or Dave, cause we never taught him that. It is awesome to know your child is learning cool things from his friends.

And, whoa! He is holding those two fingers apart pretty well, a true feat of fine-motor-skills.

I see a boy who continues to evolve physically and cognitively. When he was a little guy, I just wanted the happy ending. Now I know there is no actual ending—and that's a good thing. When you have a child with special needs, there is no expiration date on progress.

When you look at photos of your child, I'll bet you see stuff other that other people might not see.

A head held up without support or a child sitting on his own, at last.

A hand that's not fisted.

A body moving in a new way—rolling over, propped up on hands, leaning on a couch for support.

Steps taken.

Your child looking straight into the camera lens, not something that always happens.

Your child holding a food or drink independently or trying a new one.

Your child participating in an activity or event you never thought he could.

Your child interacting with family or friends in a way you never imagined.

Your child loving life, despite grim predictions you may have heard from doctors. Perhaps they told you the worst but your child, so full of joy, did not get that memo. Your child who keeps proving them wrong. Your child who, to others, may seem not "typical" but who is perfectly wonderful to you.

Yes. This is what we see.

Monday, February 10, 2020

Juggling a child with disabilities and your other kids, too

This is a guest post by Leah Moore, a high school English teacher. She is a mom of three, including twin boys and a daughter with Cri Dru Chat, a rare chromosomal disorder. Leah blogs at Loving You Big; her writing has been featured on Scary Mommy, Erma Bombeck Humor Writers and The Mighty, among others. Her short documentary about Cri Dru Chat has been raising awareness about the syndrome. The following is an excerpt from her first book, which she is working on publishing.

I was cutting the last of the grapes into fourths, when I shooed away a familiar feeling. My daughter has once again bitten me in the butt. Sharp teeth against denim.

I’m not sure what is more unnerving: that I was bitten or that it doesn’t phase me anymore. It has become the norm. Her mouth is the exact height of my derriere, she has learned biting doesn’t hurt me, and it immediately makes her needs known. I can tell she is about to lose it. Her usually sweet disposition will soon be replaced by a shrieking stranger. I have had seven years of practice to anticipate these breakdowns since the addition of a new word to our household. Cri Du Chat. In French, it means "Cry of the Cat." In medical school, it is a deletion of the fifth chromosome. In the doctor’s office, it means tracking microcephaly to accurately measure head growth. At my kitchen table, it means my daughter.

The diagnosis, first discovered by French geneticist Jerome Lejeune in 1963, occurs in 1 in 50,000 births. However, her “unremarkable birth,” a term used when nothing medically abnormal occurs during delivery, suggested we were not in this exclusive group. Yes, she needed surgery to correct a birth defect and she was choking in the nursery, but we were assured it was nothing out of the ordinary. We were new parents, everything was out of the ordinary.

At six months old, I thought it was cute when a woman at the airport asked me if I was holding a kitten wrapped in a blanket. "That’s just her little cry," I remarked, never possibly knowing the "cat-like cry" was the French translation of the syndrome. I also couldn’t have known this curly haired giggle monster, heading to visit her Grandparents, was also facing a future of hypotonia, lack of self regulatory behavior, and severe intellectual and physical delays.

When my eleventh-month old daughter was at the same developmental milestones as a newborn, we increased the early intervention and sought answers.

On the way home from the geneticist’s office, after hearing the news, "It is Cri Du Chat. We don’t know if she will ever walk or talk," I had to pull the car over to cry. When I looked into the rearview mirror, I saw my daughter looking at me, laughing. She probably thought Mommy looked very silly. In that moment, when my greatest fears were realized, I just needed to look at her. She was exactly the same. The chubby-faced baby I carried into the doctor’s office was the same one who came out. She would still need dinner when we got home and curl up on my lap to read Goodnight Moon before bedtime. The world of tummy time, play dates, and birthday parties were replaced with forty hours of therapy, year round schooling, and fear. Would I be able to keep her safe? Would our marriage handle this stress? Would we be able to provide for her?

I recalibrated what motherhood looked like. I became her advocate. I received formal training to put my "oxygen mask on first," I filled my world with the strongest support systems, sought the best educational placements, and interviewed the most knowledgeable doctors. I learned to speak aloud what others only feel in silence; it is possible to find a balance of heartache and happiness within the same home.

My attention turns to the frustrated face before me. I de-escalate the situation by handing her a perfectly cut bowl of grapes and she meets the calm in my voice with the gratitude in hers. As I turn back to the kitchen counter, I feel another bite.

I pull back, this time, not facing my seven-year-old daughter with special needs, but my two-year old son. He’s standing there smiling, holding out a bowl, waiting for his portion.

I use my formal parenting voice: "We don’t bite."

"Ok. Grapes, please."

Next week. Same butt. Different son.

"We don’t bite."

"Ok. Grapes, please."

There is a ripple effect of raising a special needs child. All this time, I was concerned about managing my daughter’s behaviors, I never realized her twin brothers were watching, studying, learning. They did not see her limitations, only her actions. They didn’t know how incredible it was that she learned to stand independently at the counter or that her yelling at me was something I only dreamed of hearing one day. In some cases, I condoned behaviors that would otherwise be unsuitable, and my sons would learn those behaviors too. If she received a bowl of grapes by biting, they would too. They weren’t acting out. They thought this was the way things were run around here—"No please, no thank you, just bite."

My husband and I are raising a child with special needs and two little parrots. Our home is not defined by our daughter’s diagnosis. It is defined by palpable joy you feel upon entering, knowing the children are practicing kindness, empathy, and perpetual toilet training. We give our sons language to understand their sister sometimes needs more help. They will live with her diagnosis everyday of their lives. She will one day go from their big sister to the sibling that needs a caretaker. She will be their responsibility to care for. That is a lot of pressure to put on two boys in diapers. So, for now, we just enjoy being a family.

When she is too fatigued to leave the children’s museum, her brothers will stop and attempt to carry her to the door with their thirty pound bodies.

When it’s time for her nightly medicine, she calls for her "doctor brothers" who enthusiastically administer the syringe and milk.

When we go to the grocery store, she makes sure they are safely in the cart while she gets to push the cart and dance beside them.

When one of the boys gets a shot, she holds their hand and whispers, "I will help you."

When we go to the park, even though they are running at different speeds, they all play tag together.

Yes, our boys are being raised with a sister that may need more than they do. There are days they will not get the same amount of attention; there are also days the boys will get more. Her life will interrupt the stereotypes that surround disabilities. She is a not a burden. We are not sad. Her life creates joy and her diagnosis begets advocacy. We are raising three very different children and we will define our parenting successes by them knowing they are each seen as the individuals they are.

Yes, we live in a home where unusual occurrences are usual for us. Most people are not ending the day with teeth marks in their rear, but most people are also not ending the day with a dance party where all five members of the family are wearing matching wigs. These are the nights I am most grateful my sons are watching.

Friday, February 7, 2020

The Disability Blogger Weekend Link-up awaits your posts

What to do if you're new  

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

Like this: Breaking: Teen cleans kitchen floor without being asked to

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, February 6, 2020

A disability rights film gets big buzz at Sundance

Held every winter in Park City, Utah, Sundance is the largest indie film festival in the United States. This year, Taylor Swift's Americana got big buzz. But so did another movie that debuted that same night: Crip Camp, reports the AP News. It won the Audience Award.

The documentary takes a look at Camp Jened, a camp for teens with disabilities in upstate New York run by hippies during the sixties. A number of campers went on to play prominent roles in the disability-rights movement, including Judith Heumann, who sued to become the first wheelchair-using teacher in New York in the late '70s.

Told from the POV of former camper Jim LeBrecht, the movie tracks the longtime fight for civil rights from summers at the camp to today. It's the second film produced by Michelle and Barack Obama's production company, Higher Ground. Said one reviewer, "You can't come away from this film without feeling awed, moved and not a little bit of ashamed of just how these activists have been forced to fight to be seen and treated as human beings."

Crip Camp will be up on Netflix in March, and I can't wait to watch it with the family. I'd like us all to understand just how far we've come with disability rights, and for Max to see the power of advocacy in action.

Wednesday, February 5, 2020

Including people with disabilities in voting starts with all of us

Yesterday my friend Cindy drove a man to vote in the Iowa Caucus. Cindy is someone I've only ever met online but she happens to be one of the better people in this world. That explains how she ended up escorting Raymond, who lives in Des Moines and needed a ride because he's in a wheelchair and the caucuses are notably inaccessible.

Vox ran a story a couple of days ago about the situation. Paper ballots are not an option, so voters have to travel to one of the state's 1,678 precincts to participate. The rooms are crowded. Seating can be an issue. As caucus-goer Emmanel Smith, an advocate with Disability Rights Iowa, told Vox, "If somebody backs into my wheelchair and falls and topples me, I'm going to get badly injured."
Smith and the people he works with hosted their own caucusing event, after having learned the rules.

The lack of accessibility at the Iowa Caucuses is reflective of the bigger problem this country has with disabled voters and voting.  This post by The PEW Charitable Trusts summed up issues that include untrained poll workers who may not correctly operate accessible voting machines (if at all), places that may not be wheelchair-accessible at all or provide adequate privacy for voting, and  limited access to registration materials, too. How undemocratic is that?! Not to mention the fact that politicians have often failed to reach out to the disabled population.

There is progress. Despite the challenges voter turnout is on the rise—it surged 8.5 percent in 2018, per a report released by researchers at Rutgers University. This year marked the first time an Iowa Caucus was lead in American Sign Language, reports The Guardian. In 2018, OmniBallot—an accessible online voting system available via computer, tablet or smartphone—was deployed in more than 400 election jurisdictions in America, according to Since its launch in 2015, more than 1 million voters with disabilities have used the system, notes the Zero Project, a nonprofit focused on the rights of persons with disabilities globally.

Max turns 18 in December, a month too late to vote. But I'll be taking him, Sabrina and Ben with me when I cast my ballot. Sabrina and Max were in the booth with me  in 2016, and they each pressed the buttons. This election, I'm hoping to help Max better understand the whole process. He thinks Donald Trump is a laugh riot, because he and Dave used to watch the Alec Baldwin skits on Saturday Night Live and Max remains convinced Alec and Donald are one and the same. Hmmm.

If you'd like to help with rides this election year, or are a voter with disabilities or know someone with disabilities who will need a ride to vote, reach out to Carpool Vote and Drive the Vote. You can also search this nationwide list of volunteer transportation providers, or reach out to the campaign office of local candidates. My friend Cindy had heard that ground support was needed in Iowa, drove there from Chicago and through Elizabeth Warren's campaign got a list of people to call who needed rides.

#CripTheVote, a nonpartisan campaign aimed at getting candidates to address issues relevant to people with disabilities cofounded by Andrew Pulrang, Gregg Beratan and Alice Wong, is holding a twitter chat on debate accessibility on February 12 at 7 PM Eastern Time (4 PM Pacific/5 PM Mountain and 6 PM Central). Here's more information on that. And for other inspiration and resources, check out the REV UP Campaign, launched by American Association of People with Disabilities to promote voter turnout.

Oh, and also check out this video series by Samuel Habib, a disabled young man (some of you might know him from the film Including Samuel) who's been meeting presidential candidates and and asking them about disability issues.

Tuesday, February 4, 2020

Proms for teens with disabilities: Yes, they're a good thing

Next Friday, Max will get dressed up in a button-down shirt and khakis. Dave will drop him off at Night to Shine, an annual prom for teens with disabilities sponsored by the Tim Tebow foundation. Max will meet up with his designated buddy for the evening. Then Dave will take off and Max will have the time of his life—he'll walk a red carpet, dance, eat dinner, take a limo ride, do karaoke if he wants to.

The event is in its sixth year, with 115,000-plus guests in 34 countries expected to attend and 215,000-plus volunteers hosting. There are also assorted indie proms just for teens with disabilities happening around the country, like the Ignite the Light prom that happened last Saturday night in Johns Creek, Georgia (above, a photo of last year's); the A Night To Remember prom on April 20 in San Diego for young adults ages 15 to 22; and Shine Prom in Alabama, coming up on May 24 in Meridian, Idaho.

I think it is important for proms at high schools to be inclusive of students with disabilities—inclusion should extend into all aspects of school. That's why I used to think that proms for kids with special needs unnecessarily segregated them. Part of my feelings were tied up in the fact that Max didn't have friends without disabilities; his social life has always consisted of friends he had at school and ones he mingles with at events, and I felt that meant it was lacking. Max is a really social kid—shouldn't he have friends of all kinds? Why can't typical kids see how awesome he is? I'd think.

But I've come to accept reality: Friendship with so-called typical peers was hard for Max because of their very different interests. I've had to learn to stop projecting my idea of what a friendship circle "should" look like and accept Max's idea of contentment. Which is, basically, a key part of what parenting your child with special needs is all about.

Proms for teens with disabilities let them revel in their friendships and romances on a special, festive night. They enable teens who need an extra hand to get one from a peer or adult partner, and be independent from their parents. Cause what teen wants to party with their parents?! While I hope that teens with disabilities feel as welcomed at their school proms as any teen, it's awesome for them to have options. Proms for teens with special needs don't segregate them; they celebrate them and their friendships.

Max is perfectly content with his social life. Last Friday night, I dropped him off at his school's pajama dance. I watched as he greeted his friends with high-fives and mingled before he saw me watching and, pointing to the door, mouthed "OUT!" As this mom spy sheepishly trudged out, I noticed Max huddling with a few friends, discussing something. I was curious to know what but, really, it was none of my business.

Monday, February 3, 2020

Breaking: Teen cleans kitchen floor without being asked to

In a shocking development, a teen has cleaned the kitchen floor without being asked to do so.

The event occurred over the weekend when Max S., 17, poured himself a cup of water from the refrigerator water dispenser.

"I was happily watching him help himself to water," said his mother, Ellen S. "This is a new skill for Max, who has cerebral palsy and some challenges using his hands. He opened a cabinet, took out a cup, poured himself a cupful and drank it all on his own. It was awesome."

During the process, Max splashed some water onto the floor.

"Usually in our house, when anyone spills anything on the kitchen floor—water, apple juice, bread or cake crumbs, rice, lasagna, yogurt, pickle juice, ketchup, milk, soy sauce, you name it—it just sits there until I clean it up," said Ellen. "I mean, I could leave a spill there for days, a week, maybe two weeks, maybe a month, maybe a whole year, maybe ten, maybe forever and nobody would touch it. What's up with that? Why are moms the only ones who ever notice the floor is dirty?!"

Not this time. As Ellen watched in astonishment, Max grabbed a dish towel, bent over and wiped up the floor. "Then he flashed this big grin at me," says Ellen. "He was so pleased with himself. And I was so excited for him. The whole thing was an impressive feat of fine-motor skills, not to mention, the core strength and balance he had to use to crouch down!"

When asked about his breakthrough cleanup, Max—who dreams of moving to California—said, "This is not my real home. Los Angeles is my home."

Ellen sincerely hopes that this is not the first and last time someone in her family cleans the kitchen floor.

Asked why they never clean the kitchen floor, the rest of the family—Dave, Sabrina and Ben—declined to comment.

Friday, January 31, 2020

The Disability Blogger Weekend Link-up is open for business

What to do if you're new  

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

Like this: How Early Intervention helps special needs parents

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, January 30, 2020

Another toilet training win (yeah!) and the same old woe (sigh)

One of the biggest concerns I have about Max's future is how independent he will be. When your child with special needs is little, your worries are all about what your child will be able to do. Now that Max is a teen and I have a better handle on that, I just want to know how he'll function when I'm not around. I don't just mean when I'm gone from this earth (although that thought is always lurking in the back of my mind), I mean in situations like work or a hangout at the mall with friends. We've recently hit another milestone but still, I just don't know.

Max has been toilet trained for a good seven years now (here's the backstory on that). Pulling up his pants has remained a challenge. The OT who's come to our home for a few years and who recently moved away (ugh/crap/damn/on the hunt for a new one) had been working on it. Grasping an elastic waistband—the only kind that work for Max—is tricky for him, ditto for the motion of drawing pants up. He's had some success but he sometimes just gives up and begs us to do it, or he forgets to pull up the back and walks around the house with his butt hanging out, which gives Ben a good laugh but sure isn't doing Max any favors.

Max's school OT recently emailed me to ask if I'd heard that he had pulled up his pants on his own. He has to go to the nurse's office for assistance with toileting—because of the pants prob, his ability to clutch t.p. is challenged, and his arm movements do not include the ability to reach behind.  

I actually hadn't heard about Max pulling up his pants at school. So when I stopped by there this week, I asked one of the nurses what was up. She proceeded to tell me that one day, Max had been taking a longer than usual time in the bathroom—he typically called her in when it was time to pull his pants up. And then, he opened the door and walked out, his pants all pulled up. And that had consistently been happening at school for the last couple of weeks. 

As is often the case, Max can be way more independent at school than he is at home, where he knows Dave and I will do things for him. My classic example of this is from years ago, when I showed up at his school for a conference, peeked into his classroom and was astounded to see him seated at a table with a bowl shoveling his lunch into his mouth. I walked in to say hi. Max shook his head "no"—he didn't want me to see him feeding himself. Because that little smarty pants was only spoon fed at home, even though it turned out he'd been eating lunch on his own since the start of school.

Now that I am onto Max (BUSTED!), we will be doing our best not to lend him a hand with his pants. The other challenge is something I have yet to find an answer for. I've asked adults with CP, and some have suggested various t.p. toilet aids but so far I haven't found anything that Max could manipulate. His OT at school did, however, recently sent a link to a new clip-on bidet called, um, Tushy. No electricity is required, though if you want the "spa" version that releases warm water, your toilet has to be next to a sink. It sounds promising. And yeah, maybe Max should move to Europe instead of L.A., because bidets are more common there. Then I started fantasizing about public toilets having a gadget like this, a true special needs mom fantasy. But who knows, maybe someone will invent an electronic wiper that Max and other people with cerebral palsy could use.

As always, I have fears about the future—but hope, too. 

Wednesday, January 29, 2020

Nothing says typical like sibling fights

I was driving Sabrina to a friend's house this weekend when Dave called. He'd taken Max and Ben out for lunch. "THE BOYS ARE ABOUT TO KILL EACH OTHER!" he shouted. In the background, I could hear yelling.

Assuming that things were not actually going to get lethal, I told Dave to call back because I was driving. Sure enough, when he did the boys had calmed down. But I totally got how freaked out he was: Seeing your kids fight is the worst. And Max and Ben are going through a fighting phase. For anyone who wonders whether families that have a child with disabilities are typical, you'd have to see these boys going at it.


Mostly, they're competitive. They both want to be first everywhere—first to be dressed on weekend mornings, first to the car when we go out, first into the restaurant, first to the door of our house when we get home. Max has had these impulses over the years but now Ben has the "I'M FIRST!!!" bug, bad. And they can get physical: Ben will swat at Max's butt or push him. Max will whomp Ben on the head. They'll both roar and shout. When Ben is losing it, he'll take a flying leap at Max and then Dave or I will have to separate the two of them.


We have been down this road before. Max and Sabrina had their fair share of squabbles, too, and now they're mostly pleasant to each other. Although for Sabrina's birthday yesterday, all Max wrote on her card was "I want to move to Los Angeles, CA."


I think back to when I was growing up, and how much it pained my mom to see my sister and I fight. We sometimes went at it like Max and Ben do, yelling and hitting and all. I can hear her now, close to tears: "GIRLS! Stop fighting!" My torture of choice was chanting to my sister, "You're not going to have a birthday party! You're not going to have a birthday party!" Ben and Max torture each other with mentions of Los Angeles, where Max hopes to someday move.

Max to Ben: "You're not moving to Los Angeles with me!"

Ben to Max: "You're not moving to Los Angeles!"

We try to even things out: Ben can be first in the car, Max can be the first into the store. "Try" being the operative word. I'm not particularly concerned; I figure they'll grow out of it. They have their moments of sweetness. Typically, Max will lean over and kiss the top of Ben's head. Ben will say "NO!" but then he'll grudgingly give in, and that's how it goes.

The other day, Ben and I were at home doing some cooking together.

"Max was being really nice a little bit today!" Ben announced.

I'll take it.

Tuesday, January 28, 2020

This is fifteen

Fifteen is loving sports and selfies and and so many friends and cuddly clothes and camp and sushi and anything fun. And did I mention shopping?

Fifteen is the girl whom all the other moms—and I do mean all—regularly call "so nice."

Fifteen is never coming out of your room at night except to shower at 11:40 p.m.

Fifteen is never waking up in the morning, no matter how loud the music blasts from your Echo, even that week when we blasted Barry Manilow.

Fifteen is being a great big and little sister.

Fifteen is appreciating good books, good shows and good trips. And did I mention shopping?

Fifteen is being a better baker than your mom is.

Fifteen is really being into volunteering at the program Max has attended for years and the Saturday morning service for adults with disabilities.

Fifteen is having a natural hair color that people pay good money for.

Fifteen means knowing just how to use heat styling tools and even remembering to turn them off.

Fifteen is being embarrassed when your mom compliments you in front of other people or does something awful in public like talk, laugh, breathe or exist.

Fifteen is acing tests and school reports.

Fifteen is having impressive game skillz.

Fifteen is teaching your little bro your dance moves.

Fifteen is knowing everything, but that's definitely incorrect, because I am the one who knows everything.

Fifteen is making baskets like this. Just, whoa. How did you even DO that?

Fifteen is also being amazing at lacrosse and cross-country and whatever sport you try.

Fifteen is pulling off anything you're determined to do.

Fifteen is being a favorite babysitter of kids in our neighborhood.

Fifteen is not agreeing. Then again, "No!" was your favorite word when you were 2.

Fifteen is still being a Daddy's girl.

Fifteen is not being able to see the floor of your room because of all the clothes lying there, but also knowing exactly how to organize it.


Fifteen is forever being "Mena" to Ben.

Fifteen is forever being our girl.

We love you, darling girl. Happy fifteenth birthday! May it be the most amazing year.

Monday, January 27, 2020

How Early Intervention helps special needs parents

There was an excellent piece in the New York Times Parenting section last week by Emma Fitzsimmons, the City Hall bureau chief: How Early Intervention Changed My Son's Life. Like my Max, her son had a stroke. His was in utero; Max's happened during his birth. At 2, Emma reported, her son "is walking and talking and keeping up with his peers." She noted that Early Intervention is one of the reasons he's doing so well, and what an incredible program it is, one that some parents don't know about or tap into.

Early Intervention is a godsend for special needs parents, too. Max was my introduction to the world of disability; the Early Intervention therapists were my saintly tour guides.

I reached out to EI while Max was still in the NICU. A consulting neurologist had advised us to get Max as much therapy as possible, a social worker told us about Early Intervention, and I was raring to do whatever I could to help him. We were still in shock about what had happened, and I felt so helpless and powerless. Here, at least, was something we could do for him. I spoke with the EI supervisor and telling her about what had happened to Max and all that he was at risk for, and she agreed he was a candidate. He was enrolled at two months old.

By the time he was 21 months old, Max was commando crawling. Like an army soldier, he'd use his arms to propel his body forward—he always had determination, this boy. Max had no words. He couldn't pick up objects. I was a walking ball of anxiety, but I often found consolation in his therapists, not to mention, salvation.

There was Mindy the physical therapist, who would position Max on his hands and knees, hover over him and move his arms and legs, literally teaching him to crawl. Mindy, the angel—angel!—who felt confident that because Max could bicycle his legs, he might someday walk. It was she who recommended the Pony gait trainer, and Max soon learned to zoom all around our first floor. Oh, how he loved that thing. I can only imagine how it felt: After not being able to move any of his limbs very well, he found freedom. We padded corners with pieces of Dr. Scholl's Moleskin (one of the most unfortunately named products ever). Later, she recommended the Laye posterior walker that Max practiced with on our street. That contraption lead to his first independent steps. On his third birthday, he walked across his room from Dave's arms to mine.

Nafeesa, the occupational therapist, would wrap Max's chubby little hands in Coban wrap—the stuff you use to wrap sprained ankles—to keep his fisted fingers more open so he could learn to grasp. She suggested getting Theratogs to give Max's trunk more support and better alignment and, later, the Benik hand splints Max wore to keep his thumb isolated so he wouldn't tuck it in. She stayed with us for years after Early Intervention ended. The speech therapists came and went (they were the hardest therapists to get through EI) but we lucked out and found Jeri, a private SP who still sees Max to this day.

We also had a teacher through EI to help Max learn basics like colors and letters and a visual specialist who came to us from an association that served the visually impaired (Max's vision in his early years was affected by the stroke). One weeknight a week, Dave—often accompanied by his mom, for company—drove Max to another physical therapist. On weekends and Fridays when I worked from home, we took him to alternate therapies including aquatic therapy, hippotherapy (horseback riding) craniosacral therapy and hyperbaric oxygen therapy. Soon enough, we'd add feeding therapy, too.

Early Intervention is a gift to working moms. The wonderful nanny we had didn't drive, but I couldn't have expected anyone to drive him to the ten-plus sessions he had every week. The therapists would faithfully arrive every day, and we would communicate mainly through notes. I didn't feel guilty about going to work because I knew he was in their capable hands.

The therapists patiently answered my kajillion questions about how limbs and muscles and brains work, how the other kids they'd helped were doing (#goals) and what else Dave and I could do for Max. They showed me how to enable him: objects placed out of his reach could encourage him to  move his body toward them, my Boppy breastfeeding pillow could be used to support his back so he could sit up, a mirror propped in front of him could engage him and further encourage him to stay upright. (That's Max at 10 months old in the picture above, supported by his OT.)  We'd incorporate exercises they'd given us into Max's routines: bicycle his legs while changing his diaper, massage his hands in the bath, rub his cheeks and jaw with a washcloth to loosen them up so maybe he'd make sounds.

Sometimes, the exercises overwhelmed me. I felt this tremendous amount of pressure to be the one to get Max to do stuff. I just wanted to enjoy my chubalicious baby. I just wanted him to be OK. There were entire weekends when Dave and I would blow off the exercise regimes, take Max to the park or to a museum and just be a family. Our pediatric neurologist had told us to expose Max to as much as we could. He was seeing and learning when we explored new places. He was feeling the warmth of our love and that was therapeutic, too.

My soul and spirit needed healing from all those "He may never do ___" words I'd heard from the curmudgeonly lead pediatric neurologist at the hospital where Max was born. As I'd told the social worker when I complained about the pediatric's neurologist's negativity, "If I don't have hope as Max's mom, who will?" I found that hope in Early Intervention. Putting my sweet baby in the therapists' capable hands gave me comfort like nothing else. Their determination to help Max progress was the confidence I needed. Their

While it isn't part of Early Intervention therapists' jobs to provide therapy to parents, their reassurances—not false promises, just cautiously realistic hope—helped offset the NICU nightmare that haunted me and made me despair. The conversations I had with them about how Max was doing, sitting on the floor as they worked Max's limbs and tried to coach movements and sounds out of him, were my talk therapy. Their encouragement was my anti-depression medication, although I probably should have gone on meds, a doctor later told me—there is no shame if you need them. When they agreed with me that indeed my boy was gifted with cuteness, I'd beam.

Early Intervention therapists changed Max's life, as so many do for so many little ones. They changed my life, too. The EI therapists enabled me to be a good mom to Max. They were rays of sunshine, warmth and solace in the greatest period of darkness in my life. For that, I am forever grateful.

Friday, January 24, 2020

The Disability Blogger Weekend linkup has arrived

What to do if you're new  

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

Like this: Everything we grew up thinking about kids with disabilities was wrong

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

Thursday, January 23, 2020

Which books do you remember from childhood? A list to give you all the feels

The other night, I read Ben Bread and Jam for Frances by Russell Hoban (with illustrations by Lillian Hoban, his wife). It's a book I remember my mom reading to me as a kid, and it is one of my all-time favorites. The story involves a feisty girl-bear who decides she's only eating bread and jam, and who soon realizes that—spoiler alert!—that can get old, fast. One day, she watches a friend at school unpack his lunch.

What do you have today?" said Frances.

"I have a cream cheese-cucumber-and-tomato sandwich on rye bread," said Albert. "And a pickle to go with it. And a hard-boiled egg and a little cardboard shaker of salt to go with that. And a thermos bottle of milk."

Oh, that cardboard shaker of salt: How I loved it. I didn't know what a cardboard shaker of salt looked like, but I thought it was the most amazing thing.

Turns out I am not alone with the cardboard salt shaker obsession, as I discovered when I asked people on Facebook which books they recalled their parents reading to them. People mentioned books I'd long since forgotten, along with some I never even knew existed. My childhood was devoid of Poky Little Puppy, though somehow I still turned out pretty OK.

Reading is the activity I most enjoy. As a kid, I was friends with our local librarian. Every week I'd take out the maximum number of books (ten), haul them home and return the next week for a new batch. One of my greatest joys as a parent has been introducing books to my kids. This took on a new level of importance with Max, starting with his NICU stay. One of my most vivid memories of that time is standing next to his incubator as he lay there, unconscious, and reading Oh, The Places You'll Go! to him through the vent holes. I choked out the words in between sobs, aching to encourage him and myself, too. 

I filled Max's bookshelves to capacity. I thought reading could encourage him to articulate sounds and words. I wanted books to open up his mind, brain damage be damned. As I read, I'd talk about the colors on the pages and what was happening in the story. I'd ask questions and answer them myself until he learned to nod yes and no. Max was finicky, but I got him hooked on books about trains, and buses. Later he got into books that related to his obsessions—the color purple, Lightning McQueen, fire trucks. Today Max can read very well, and while he doesn't care much about books, I have hope that he'll come around.

Reading to Ben at bedtime is a highlight of my day. I'm always looking for new books, and I'm planning to get a bunch my Facebook crew mentioned. Here's a list of the books friends most fondly remember from their childhoods. I hope they give you ideas, along with the warm-fuzzies.

Harry the Dirty Dog
Chicken Soup with Rice
Fish is Fish 
Tiki Tiki Tembo
Pat the Bunny
In the Night Kitchen
The Story of Babar

Gerald McBoing Boing
The Poky Little Puppy
The Little Engine That Could
The Story of Ferdinand
Lyle, Lyle Crocodile
Green Eggs and Ham
A Fish Out of Water
Richard Scarry Books

The Snowy Day
Edith and Mr. Bear
A Child's Garden of Verses
Where The Wild Things Are
Curious George
I Love You As Much
Goodnight Moon
The Runaway Bunny
A Bear Called Paddington

Leo the Late Bloomer
Mike Mulligan and his Steam Shovel
Are You Mother?
Hop on Pop
Morris the Moose
Harold and the Purple Crayon
Put Me In The Zoo
Good Night, Little Bear

Caps For Sale
Dr. Seuss's Sleep Book
Button Soup
But No Elephants
The Giant Jam Sandwich
Cloudy With a Chance of Meatballs

Where The Sidewalk Ends
Make Way for Ducklings
Blueberries for Sal
Little Bear
One Fish Two Fish Red Fish Blue Fish
The Velveteen Rabbit

Wednesday, January 22, 2020

When you enable your child in weird ways

Max's favorite phrase these days is "It's disgusting here!" As in, I don't understand why you are forcing me to live in an area that's cold if I could move to sunny Los Angeles. His second favorite phrase is "I don't like it here!"

Me, I refuse to give in.

"I like it here," I say. "I like having different seasons. I like snow."

Max will look at me and shake his head.

"No, it's disgusting here!" he'll say, once again with feeling. "I'm moving to Los Angeles!"

Repeat, repeat, repeat.

Dave takes the opposite approach—he totally enables Max. When they are in the car, they only listen to KIIS radio on Sirius XM, a Los Angeles station. Dave got Max a California phone number for his Apple watch. Then there are the daily pep rallies. The two of them are up early in the morning, our living room is right below our bedroom and I often wake up to the sound of them gleefully shouting.


Dave: "Yeah! And you're going to move to Los Angeles!"

Max: "YEAH!"

Dave: "Because it's cold here and it's snowing and who needs that?!"

Max: "YEAH!"

Dave: "And you'll get a big, cool house!"

Max: "YEAH!"

Dave: "And you'll go to In-N-Out Burger!


Repeat, repeat, repeat.

And I'll lie in bed and wonder whether Dave should be doing that. His enthusiasm is real—like Max, Dave can't stand the cold. Palm trees are one of his favorite things in life. He and Max could be very happy together in L.A., although there are three other members of our family.

Is it wrong to humor Max this way? Part of me thinks that Max is well aware this is all talk and fantasy. Part of me isn't so sure. And yet, he feels certain that L.A. is his home.

This is not to be confused with all the other ways we have fueled Max's obsessions/interests over the years, buying him all things Lightning McQueen, referring to him as Purple Car Wash Spaghetti Max when he went through several phases at once, going through car washes multiple times (on the same trip), visiting fire stations everywhere. When Max is passionate about something, he is all in.

Sabrina chooses not to engage. Ben can go either way. If Max pisses him off, he'll announce "MAX!!! You are not moving to Los Angeles!" If it's a good moment, he'll remind me that Max is moving to Los Angeles.

Besides pep rallies, Dave and Max's other favorite activity involves asking Alexa what the weather is in Los Angeles. Dave usually does the talking because Alexa doesn't yet speak Max.

"Alexa! What is the weather in Los Angeles for the next week?"

Alexa will pull up the forecast and Max will scan it and happily point and say "Wow! 77 degrees!" or whatever the highest temperature is.

Repeat, repeat, repeat.

I mean, yeah, I did buy him a Los Angeles sweatshirt when we visited in December. But that's what tourists do, right? And yeah, so what if I let him wear it a few days in a row, I wash it! Mostly!

Anyway, I am here to report that Dave has a business trip in L.A. mid-February and Max has that week off school and....


Tuesday, January 21, 2020

Everything we grew up thinking about kids with disabilities was wrong

A mom I met this weekend who has a teen son with Down syndrome was telling me what happened after his birth. As she sat there, sobbing, a doctor asked, "Didn't you have chromosomal testing?" We both agreed how mind-boggling awful that was, and discussed how things had shifted in recent years, with more and more women choosing to have babies with Down syndrome.

It got me thinking about how perceptions of disability have changed since I was a kid and how my Max, who has cerebral palsy, has transformed my thinking. The stereotypes—that people with physical or intellectual disabilities are helpless, incompetent, clueless, pathetic—are still around. But society is increasingly beginning to accept and understand that:

Kids with disabilities are not tragedies
When you have a baby who's born with a disability, you may struggle mightily. Our culture does not prepare parents for the possibility of having a child with disabilities—if anything, it makes you fear having a child with disabilities. Yet I grew to learn, as so many parents do, that our children may not be what we expected and they may not be what is considered "typical" but in the end, they are children who are as full of of life, love, happiness, curiosity, brightness, sugar and spice and everything nice as any children. And they are children every bit as loved as our other children.

Kids with disabilities are not happy "despite" their disabilities
There have been times when strangers have commented how amazing it is that Max is so happy, as if it is mind-boggling that anyone with cerebral palsy could be happy. It's true that Max is a naturally cheerful sort, but CP is also a natural part of who he is. While there are times when he gets frustrated because his arms or fingers don't do what he wants them to do, he doesn't feel sorry for himself. For years, when he said something and people couldn't understand him, he'd lean closer and say it more loudly. He didn't think anything was wrong with his speech; he thought that there was something wrong with other people's hearing. My boy Max is content with who he is.

Kids with disabilities have all sorts of abilities

Looking at a child in a wheelchair, some people see only a child who cannot walk. Looking at a child with Down syndrome, some people see only a child with intellectual disability. But our children are multi-faceted; their disabilities are one component of their being. They can sing, dance, make art, ace tests, perform in shows, win spelling bees and beauty pageants and athletic competitions, you name it. They just do it their way. Here's Max singing Let It Go with his music therapist. Here's Max booking at the Special Olympics race he participated in. Once you stop thinking that there is a "right" way of doing things, you can see all the abilities that exist in this world.

Kids with intellectual disability are bright
The thinking that kids with autism tend to have phenomenal recall, particularly for numerical facts—baseball stats, birthdays, phone numbers—is largely based on the 1988 film Rain Man. Only a minority of kids with autism have so-called savant syndrome. The others can possess all kinds of smarts, and the same goes for children with intellectual disability. We were told from the start that Max, who had a stroke at birth, would have severe cognitive challenges; you wouldn't know that when he reads. Math is not his strong suit; mine, either. He has extremely high Emotional Intelligence, which is more than I can say for some adults I know. He quickly perceives when someone is upset, and tries to console them. He also has an amazing sense of direction, and has let me know when I'm going the wrong way—Dave and I joke that he is our human GPS. You can look at smarts as the kind that get people into Harvard. Or you can open your mind and consider all the kind of smarts there are in this world.

Kids with disabilities can have loads of personality 
You know those people who walk around unsmiling but who, when you talk with them, turn out to be really funny? The same can go for children with disabilities: you can't figure out their personalities (or anything, really) just by looking at them. Sometimes, their expressions may seem dour, perplexed or out of it. Sometimes, they do not verbally communicate. Some kids won't make eye contact. But once you do connect with them, in whatever way, you discover their playfulness, sense of humor, intelligence and the other traits that make them who they are.  Oh, and don't mistake them for sweet little angels—they can be naughty, frustrating and exasperating. Just like any children.

Kids with disabilities do not lead sad lives
They have families who adore them, joke with them, tease them affectionately and love them up as much as—wait for it!—any child. Most things that typically-developing children can enjoy—activities, music or dance lessons, sporting events,  parties, summer camp, seeing shows, trips with their families—children with disabilities can enjoy. It may take effort to ensure that places are accommodating and accessible, or to find ones that are. Some parents need to figure out how to calm a child with sensory needs. But it is possible.

When I met that other mom this weekend, we were on a Girl Scout winter camping trip. I found out that the camp offers a family camp weekend in the fall, and asked the director how Max could join in. He walks well, but can't do long hikes or climb. "Oh, no problem, we have all-terrain wheelchairs," she replied. Maybe that wouldn't have been true decades ago, or even when Max was little, but now children and adults with disabilities could be included in hikes. I felt happy and hopeful. It reminded me how far inclusion has come in recent years. People just need to make an effort...and, of course, see the possibilities.

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