Friday, June 28, 2019

The Disability Blogger Weekend Link-up: click on over

Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: Sunscreen and kids with sensory issues: exactly how to apply it

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. Thanks for stopping by!

Thursday, June 27, 2019

A little story about inclusion and children and teens with disabilities

A boy who lives down the street from us was playing basketball the other day; his family has a portable basketball hoop they keep by the curb. Max and I were taking a walk and when we passed by, he asked to play. Teilo handed him the basketball.

Max held the ball and looked up at the hoop, which was high. "Could you lower it?" I asked. Without hesitation, Teilo walked to the back of the stand, pulled a lever and lowered the hoop. Then Max took a bunch of shots. Sometimes, he'd just toss the ball up in the air it would start bouncing away and Teilo would grab it and hand it back to Max. Other times, Max would angle himself so the ball flew toward the hoop, and he got a couple of baskets.

It was pretty awesome. Max was proud of himself, as was the mom who shot this video.  

When people hear the word "inclusion" they may think of major initiatives, like including kids with disabilities in classrooms, sports, events, activities and community programs. And yes, inclusion is all of that. But inclusion also means countless everyday little ways to include our children, ones that ideally happen in a no-big-deal way.

Inclusion means saying "hi" to a kid or teen with disabilities on the playground, chatting with them at an event or roping them into a neighborhood game. It's figuring out a way to do an arts and crafts project at a camp if a child can't do it the usual way. It's lowering the music at a family get-together if it's too loud for a child with sensory needs. It's asking a parent before the barbecue if there are any particular foods a child with disabilities eats. It's...well, I could go on and on and on but really, it's roping a child or teen into life itself.

Inclusion isn't just saying yes when an accommodation is requested—it's being proactive and considerate about including a child. I can still recall the painful times I had at children's birthday parties when Max wasn't yet walking. I'd sit with him on my lap, helping him play with a toy, as the other two-year-olds zoomed by. I'd make small talk with parents, but if only one of them had sat down next to us with their child and encouraged interaction, it would have meant the world.

I can also recall this one time when a mom organized a bike race on our block and included Max. For years, Max couldn't keep up with the kids who were running or biking around. Then he got his bike and suddenly, he was on the go. I don't remember exactly how that race went down, but I do remember watching this mother gather Max and a bunch of kids at a start line, and it meant the world.

And yes, she knew Max and yes, the boy playing basketball knew Max. But that shouldn't matter. Inclusion isn't just the nice or decent thing to do, it's the human thing to do. Inclusion should be as natural and normal as opening a door for someone.

People often mean well, I know. And yet, some may think a child with intellectual or physical disabilities isn't "able" to play because he can't do it in the typical way or that it might be too challenging. Or maybe they assume a child who is nonverbal isn't up to interactions. It's best to assume competence—or at the very least, assume there is a way.

Inclusion is both an action and a state of mind.

Inclusion is all the little-but-not-little things.

Inclusion is enabling our children to belong, every single day in every single way.

Wednesday, June 26, 2019

Sunscreen and kids with sensory needs: exactly how to apply it

Applying sunscreen to a child with sensory issues can be a challenge; ditto for getting them to wear a hat. So can outdoor life during the summer, for children who have challenges regulating their body temperature. I got some great pointers from Vikash S. Oza, MD, assistant professor of dermatology and pediatrics at the Ronald O Perelman Department of Dermatology at New York University School of Medicine and a spokesperson for the Society for Pediatric Dermatology
What advice do you have for applying sunscreen to a child with sensory processing issues?  
Applying and wearing sunscreen can pose a challenge to children with tactile sensory disorders. A couple of tips: 1) Make it fun – sing a silly song for sunscreen time. 2) Make it a game; pretend you’re going through the sunscreen car wash. 3) Try spray-based sunscreen: Spray on your hand then rub them in. 4) Use roll-on sunscreen for challenging areas like the central face and back of the neck. 5) Try distraction if all else fails—a tablet or phone may be a necessary evil.
If a child can't handle the feel of sunscreen on their skin, what about wearing clothing with UPF? (That's the clothing equivalent of SPF—it stands for Ultraviolet Protection Factor.)
Limiting the amount of skin that is exposed directly to the sun with sun protective clothing can limit battles over sunscreen. Make use of lightweight long sleeve clothing, rash guards and wide-brimmed hats.
A recent FDA study found that several active ingredients in sunscreen can seep into the bloodstream at levels that exceed the FDA's recommended threshold. These ingredients include avobenzone, oxybenzone, otocrylene and ecamsule. What are safe ingredients to look for? 
Both zinc and titanium have generally recognized as safe and effective sunscreen ingredients by the FDA.
Some children with disabilities can heat up more than other children when it's hot outside, as they have issues regulating their temperatures. Do you have any tips for helping to keep their bodies/skin cool when they are outdoors at the beach, at an amusement  park or anywhere where they might end up baking in the sun? 
As every parent knows, there is no one size fits all solution. Children with ASD and/or sensory processing disorders have diverse needs and often require creative and unique solutions. Keep to the shade for both sun protection and avoid overheating. Be prepared—a spray bottle with water and cooled towels can help.
What is a good way to help a child with intellectual disability understand why sunscreen is important—how can a parent explain it? 
To explain why we use sunscreen, keep it simple: "The sun can cause burns that help our skin." And then think: routine, routine, routine. Sun protection should be second nature to both yourself and your child when enjoying time outdoors. Many children with ASD crave routine so start using sun protective clothing and sunscreen early on in life and part of a daily routine. Hopefully, your child will equate this with a necessary step towards outdoor fun. Preparing your child can also be helpful so they are not surprised. For example, walk your child through the steps involved in going to the pool, with sun protection being one of those tasks.
Any last pointers to share?
Be a sunscreen role model—apply yours in front of your child. Habits are easier to adopt if everyone in the household does them!

Tuesday, June 25, 2019

The fear parents have about police and their disabled children

Max is a good-natured, cheerful kid who occasionally roars when he gets upset. Literally, he roars. While he doesn't do this at school, he does not hold back when he's with us. It doesn't matter whether we are seated in a restaurant or walking down the street—he'll roar. This can disturb the peace for all of us. Lately, though, I've been thinking about how dangerous this could Max. I got on the phone with his school psychologist this week to discuss it.

On June 14, a nonverbal man named Kenneth French who was shopping at a Costco in Southern California with his parents was shot and killed by an off-duty officer. His parents were also shot and critically injured. That's the family in the photo above. Their lawyer has said that Kenneth pushed the officer, without going into detail, and that his actions did not justify gunfire. It was possible that a change in Kenneth's medications had affected his behavior. A cousin of Kenneth's told The Press-Enterprise that he was "non-violent, non-aggressive and nonverbal" and "a gentle giant."

This murder was deeply disturbing, and personal. Although Max communicates with words, his speech can be hard to understand. He, too, is not violent or aggressive. But when he roars he sounds scary, even to me.

I sat up late at night, googling. I read an op-ed in the L.A. Times by Marie Myung-Ok Lee, the mother of a young man with intellectual disability, that listed a number of cases in which people with physical or intellectual disability have been shot by police. "My son does not understand the law. But more urgently, the law does not understand people like him," she wrote.

I thought back, once again, to Ethan Saylor, a man with Down syndrome from Maryland who died after an encounter with police. Six years later, Maryland is a leader among states that mandate police training for responding to people with intellectual and developmental disabilities, thanks in part to advocacy by Ethan's mom, Patti Saylor. At least 27 states have crisis intervention training that require officers to have training for responding to people with mental health issues or substance abuse issues. And yet, officers may not know how to handle a nonverbal man who may be acting violently...or seemingly violently.

I thought about how Max sounds when he is distressed, and how that could come across as hostile if you don't know him. I thought about how his face looks when he is scared, and how freaked out he would be if confronted by a police officer who was barking at him or holding up a gun. It was terrifying to ponder.

As is often the case, it all boils down to awareness and understanding. Earlier this year, I shared a story about a man with autism acting violently in a hospital who was soothed by safety officers there. Perhaps Kenneth's death will spur more police departments to offer training to officers on how to appropriately engage with people with intellectual disability. But why should it take the death of another person with disability to bring about change?

I spoke with the psychologist at Max's school yesterday. We agreed that Max's reaction is part frustration and part teen, and we'll be working on coping mechanisms. Suddenly, this seems more urgent than ever. I won't always be there to protect Max, I know that. What I don't know is whether Max could protect himself from an officer who just doesn't understand him.

R.I.P., Kenneth French.

Image: Facebook/Rick Shureih

Monday, June 24, 2019

Brothers just like any others

"Max, I'm going to help you down the stairs!" Ben says, and he dashes over.

Max is pretty good at getting downstairs on his own. He takes it slowly, holding onto the railing as best he can.

"Ben, Max is fine," I say. I'm a little worried that Ben will tug too hard and throw Max off balance.

"It's OK!" Max tells me. He gets that Ben wants to lend a hand, and he is game to indulge him. That's pretty mature.

This is one of the first times I've seen Ben offering to help Max. They get along really well but he's also competitive with him, and I can understand why: Max gets plenty of attention from me and Dave and Ben wants to make sure he's getting his fair share, if not more. He's not beyond giving Max a good shove now and then or yelling "Go away, Max!"

Max is pretty good natured, and takes it all in stride although at times he argues back or roars "NO!" The two of them get up before the rest of us and Ben will go downstairs to hang with Max in the living room; plenty of times, I'm awoken by a shouting match over the remote control.

"How do they get along?" people will ask, and I smile and say, "Oh, they have a totally typical relationship. Sometimes they are best friends and sometimes, they are at war."

Max is mainly an awesome big brother, as he has been since Ben was a tot. He'll admonish Ben when he's jumping off the couch or spraying water from the sink. A lot of times, he's just completely charmed by him, as happened this weekend when Ben took off his clothes and ran around our front lawn, naked, and Max kept crackup up. I'm not sure how the neighbors felt.

Every so often, Ben will be immersed in watching a video on a phone or playing with a toy truck, and Max will walk over and plant a kiss on Ben's head. Every single time, I melt even though Ben typically responds "EWWWWW!"

On the porch stairs that day, Ben ended up holding the tips of Max's fingers and the two of them inched down, one step at a time, just two brothers looking out for each other.

Friday, June 21, 2019

The Disability Blogger Weekend Link-up: come one, come all!

Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: It's not hard having cerebral palsy, he told me

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. Thanks for stopping by!

Wednesday, June 19, 2019

The working mom panic that never goes away

"Can you go in late to work on Thursday?" Dave asks. We are at a Broadway show, Tootsie, that is about to start. Weeks ago, our new sitter told us she had to come in late one day because of a medical appointment, and Dave had said he could handle it. I put it out of my head. Only now it turns out he's traveling and can't do it. And I can't go in late to work that day, because it is my last one before vacation and it is jam-packed with meetings and to-dos.

"WHAT?!" I say, and so begins that familiar freakout. Childcare panic is a real thing for working moms, whether you're dealing with a nanny who has to be out or a sick kid who can't go to daycare.

We've had nannies since Max was a baby—daycare was never an option for us, although the backup daycare at my job when he was young was wonderful with him. Max still needed to be spoon-fed and diapered at age 3 and a woman named Jenny there had no hesitations about it. High-five to Jenny, wherever you are: I'm forever grateful to you.

We still have backup daycare, through my current company. We can make an appointment, drop Ben off at a center, then pick him up early evening. There's one not too far away from our house, and then one near my job. The option has come in handy, and I know I'm lucky to have it. But on this upcoming day, I can't swing getting Max off to school in the morning, dropping Ben off at daycare and getting to my job in time for an important meeting.

My children are depending on me. People at the office are depending on me. Help. Me.

In the afternoon, someone has to be at the house when Max gets home from school. I am so proud of him for being able to walk out our door and get on the bus by himself, then get off the bus and walk up to our front door when he gets home. That's where the independence ends, though, as someone has to unlock the door, take off his braces, oversee homework, make him dinner and lend a hand with showering and pajamas.

I am a relatively unflappable mom, excluding medical situations involving the kids (especially seizures, the most panic-inducing thing of all)—and excluding childcare. Sixteen years into parenting, that moment of "OMGEEEEE WHO IS GOING TO BE WATCHING OUR KIDS?!" is very real. It's one of the Catch-22's of parenthood: There is nobody you love more than your children but when you're sitter-less, you start fantasizing about your kid-less life when your biggest worry was getting to work on time.

I'm not able to focus much on the show, as cute as it is. Dave comes up with a solution during intermission—he reaches to out an old sitter, who is available to be there in the morning. Childcare crisis averted...for the day.

Tuesday, June 18, 2019

It's not hard having cerebral palsy, he told me

Max's class is studying the human body, and his teacher assigned him a report on the muscular system. I thought it could be a good way to have another conversation about cerebral palsy. Little did I know.

We settled onto the bench on our porch, a favorite place to do homework. First up, we had to decide on a cover photo for the PowerPoint presentation. Max scanned Google images. At first, he was leaning toward this brawny babe and I was all for it.

Ultimately, he decided to show off his own muscles, and I took the hunky pic above of him flexing. Calendar material, that boy! 

We went through a couple of books we'd gotten from the library. We discussed the three kinds of muscles—skeletal (or voluntary) muscles you can purposefully flex, smooth muscle used to connect organs and the heart muscle. Max was particularly into the digestive muscles because they process his favorite food, steak, among others. 

Fun fact: your jaw is the strongest muscle in your body. Don't you always learn lots helping your kids with homework?

After he'd finished with the information he needed to present, I asked if he wanted to say something about cerebral palsy. 

Max gave me A Look.

"No!" he said.

"Max, maybe you could explain how having cerebral palsy affects your muscles," I said. "You could talk about how sometimes it can be hard to move your fingers, even though you do a great job."

"NO, IT'S EASY!" he announced. And to prove his point, he leaned over to the table, picked up my phone and held it, triumphantly.

OK, then. 

"Max, do you maybe want to talk about how cerebral palsy can affect your speech?" I asked. We'd discussed how the tongue is a muscle. 

"NO, IT'S EASY TO TALK!" he said. "SEE?"

He seemed to be getting a bit perturbed. And who am I, a person who doesn't have CP, to tell him that it's challenging? Yeah, I'm his mom and all, but I have no idea what it feels like to be in Max's body. And maybe movements are not difficult to him, even if it at times it looks that way to me, because he's used to working through them and doesn't think twice. Or maybe he's in denial that sometimes, certain things are challenging. Or maybe both?  

But if he's telling me it's easy for him to have CP, then easy it is. 

Good to know. 

Monday, June 17, 2019

The best and safest bug repellent for children and their worried parents

Mosquito season is here. Tick season is here. Your-kids-don't-want-to-come-inside season is here, too. How to not let the bugs bite? Long sleeves, long pants and bug spray, of course—plus spraying clothes with a protective substance (more on that below).

If you're like me, you'd prefer to avoid bug repellent that contains DEET even though scientists consider it safe and effective when used as directed. Still: chemicals. After doing my research, I've settled on Repel Lemon Eucalyptus, a DEET-free alternative that works.

Oil of lemon eucalyptus is a refined version of a compound that comes from the gum eucalyptus tree. Consumer Reports' testing of insect repellents found that Repel Lemon Eucalyptus, which contains 30 percent of oil of lemon eucalyptus, warded off mosquitos and ticks for at least seven hours and worked as well as DEET. It smells verrrrrry strongly of lemons, but not chemical-y. Note: It is not recommended for use in children younger than three as it can cause temporary eye injury, likely because it contains ethanol. (No insect repellent is recommended for use on infants under two months old.)

FYI, lemon eucalyptus is not an essential oil. Actually, none of the essential oils Consumer Reports tested— including cedar, cinnamon, citronella, clove, geranium, lemongrass, rosemary, and peppermint—provided good protection. Some people like picaridin as a non-DEET ingredient, but products with it didn't score as high in Consumer Reports' testing.

If you prefer to use DEET, go for one that has a 25 to 30 percent concentration (but not over that). The top-scorers are: Total Home (CVS) Woodland Scent Insect Repellent, Off Deep Woods Insect Repellent VIII Dry and Ben's 30% DEET Tick & Insect Repellent and Coleman Insect Repellent High and Dry 25% DEET.

Another proven tactic for warding off mosquitos and ticks, recommended by The U.S. Centers for Disease Control: spraying permethrin on jackets, shirts and pants, which kills mosquitos and ticks on contact. The insecticide, which goes only on clothes, is odorless and lasts for up to six washes. I use this stuff: Sawyer Premium Permithrin Insect Repellent. It's not a substitution for bug repellent—use both. Follow the label instructions for applying, don't put on skin or apply to clothing while it's worn, spray enough so that the material is damp, let fully dry (that'll take a few hours) and wash permethrin-treated clothing separate from other clothes. You can also buy permethrin-treated clothing.

Wishing you a happy, no worries summer!

Friday, June 14, 2019

The Disability Blogger Weekend Link-up awaits you

Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: This is prom as he knows it, and it's all good

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

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. Thanks for stopping by!

Thursday, June 13, 2019

He's not just Daddy, he's his BFF

"Daddy's so nice!" Max often likes to announce, out of nowhere.

"Yes," I'll agree, "he's the best Daddy."

And he is. The thing is, Dave isn't just dad—he is Max's best friend. The reality of Max's life is that he doesn't have friends to hang out with after school or on weekends, like other kids do. It's the way things are. Max is perfectly content with this relationship. Dave, too.

Together, they like to visit Max's home away from home—that would be Home Depot—where Max zooms around a cart and eyeballs appliances for his fantasy home in Los Angeles as Dave hangs at the Dunkin Donuts where the guy knows him by name. They'll head out to a steakhouse for lunch or dinner, because Max is currently obsessed with steak and needs to gain some weight, so, yes to creamed spinach too! (Dave is good at finding Groupons so we don't have to take out another mortgage for Max's steak phase.)

They'll go out for shakes, just because. Or to a movie. They'll go for a ride at a race track. They'll hit local fairs or our town's annual music festival and stay out too late. One night, at around 8:30 p.m. when I was beginning to wonder where they were, Dave texted me a picture of Max on a reclining chair looking blissed out: They'd gone to get foot rubs.

They have been on boys' trips to Chicago and Las Vegas (especially because Max wanted to check out the fire trucks he'd seen on YouTube), along with Orlando and Los Angeles.

Daddy is also his hair stylist. Before they have a night on the town, Dave is the one who smooths gel into Max's hair. Max and he will come down the stairs looking all duded up, just two guys ready to have a good time.

Neither Dave nor me could have envisioned this relationship when Max was a tot. For one, he couldn't handle new places, mainly because he had sensory issues and the noise and hubbub were too much for him. Max has mostly outgrown the sensory stuff (going to Monster Jam last weekend was a milestone of sorts). Max also had limited communication skills back then. And now, these two talk up a storm.

They've had a whole other level of connection in recent months, thanks to Max's Apple Watch. We got it for him so we could keep track of him on bus rides or when he's out for walks, and to enable communication since holding a phone and typing on it isn't yet in his repertoire of movement. He now texts Dave constantly: to let him know about weekend plans, tell him what he's up to or inform him that he'd like, wait for it, steak for dinner.

Maybe they don't do "typical" things fathers and sons do, like go on hikes or go for runs or toss a football around in the backyard. But as Dave and I have learned, typical is overrated and their outings and adventures are their normal. Maybe people who don't know better look at them and think, Awww, that man is awesome for being there for his son with disabilities. But the reality is, Dave doesn't think of Max as his disabled child—he is his awesome older son, period. Dave enjoys their outings as much as Max does. He enjoys Max's company as much as Max does his. They are true friends. And I will spare you the details of their fart jokes.

Dave was on a business trip this week and called in the other night.

"Hi, Daddy!" Max said. As usual, Max had texted him throughout the day—on his bus ride to school, during lunchtime, on the bus ride home, when he got home, before he ate dinner.

"I love all your texts, Max!" Dave said.

And he meant it.

Happy Father's Day to the best Dad.

Wednesday, June 12, 2019

Monster Jam, Max style: a post by Max

Max had a whole lot of thrills this weekend, courtesy of Monster Jam. He'd decided he wanted to go a couple of months ago; I was skeptical. This is a boy who used to run out of restaurants, screeching, because they were too loud for him. He's come a long way but still: Monster Jam?! Max was so confident, he said he didn't need his noise-blocking headphones (Dave brought them anyway, just in case).

Things started with an early access Pit Pass at the MetLife Stadium in New Jersey, where Max got to greet drivers, check out trucks up close and even ride in one. As the show started, Max decided it was going to be too loud for him. I considered this progress—being able to advocate for your own needs is key for Monster Jam and life in general. After Dave talked with Guest Services, the two of them were shown to a suite. And then Max sat mesmerized for the next three hours. "He literally did not tear his eyes away, except for eating ice-cream," reports Dave. "When the cars jumped, Max would yell 'YEAH!' He was so into it." 

I'll let Max explain it in his own words. So proud of this boy and his monster spirit.

I went to Monster jam with daddy

There were a lot of big trucks

I rode in a big green truck. It was very so fun.

It was a little loud I was inside.

The trucks went up in the air there was fire.

I ate cheesesteak and ice cream.

I liked it a lot. I'm going back next year.

Tuesday, June 11, 2019

This is prom as he knows it, and it's all good

Max went to prom again this year, looking super handsome—straight out of the prom catolog!—and like the young man he is. What?! I delude myself into thinking that time will stand still with him. My baaaaaaaaby!

Max dressed casual-cool in a plaid button down, khakis and his beloved red Chucks. He headed out with his main squeeze, Daddy, chaperoned by Ben. Before he left, he grudgingly allowed me to take photos. As happened last year, my heart twinged when I looked at him through the lens of my phone standing there, alone. But as is pretty much consistent with raising Max, all the feels were mine—he had no qualms whatsoever about heading to prom by himself. He knew he'd hang with his buddies, eat tasty food, dance like a maniac and generally have a blast.

Max doesn't know that at so-called typical proms people often take dates, although to be sure it's not unusual for friends to go together. He doesn't care that his dad walked him in or that he mostly boogied with his teachers.

We moms sometimes project our own sense of how things "should" be onto our children—they "should" have more of a social life,  they "should" be excited about the event or trip, they "should" enjoy the theme park, yada yada. We angst and ache over the childhood and adolescent joys we feel they are missing out on, but in the end, our kids don't realize and/or care...and the truth is we shouldn't, either. Are you listening, heart?

Max came home with a gigantic grin on is face. He rocked prom. He rocks life. And once again, I sit here reminding myself that our children are living their best lives, not ours.

Monday, June 10, 2019

The staffer at a theme park who lay down next to an upset autistic boy is my hero

I sat on the steps by our laundry room, waiting for the wash to end as I scrolled through news alerts this weekend.  I came upon a story that had gone viral and as I read it, I cried. Happy tears and tears of, Why aren't more people like this?  

Mom Lenore Koppelman posted about what happened on Facebook, at the end of May. She and her boy, Ralph—whom she describes as "awesomely autistic"—were at Universal Orlando Florida. Ralph had been beyond excited to ride the Spiderman ride at Islands of Adventure, continuously asking when the ride was coming up. The family sat in an ac'd spot until it was their turn. "The anticipation was driving him wild!" Lenore wrote. "But he did his very best to regulate it with the tools he has been given over the years by his teachers and therapy team at his special needs back home. They, and he, are all AMAZING."

Finally, it was their turn...except the ride broke down. And Ralph understandably lost it, collapsing onto the floor right by the exit and screaming, rocking and struggling to breathe. A ride attendant named Jen rushed over as Lenore tried to get Ralph to stand up. Jen told her to let him stay on the floor if that's where she needed to be. And then, Jen lay down next to Ralph. Lenore described what happened this way:

"She spoke to him so calmly, and while he screamed and sobbed, she gently kept encouraging him to let it all out. She told people to keep on walking around them, so they would stop standing there and staring. And then she told him it was okay for him to be sad and feel this way. She understood. She would feel the same way too. His feelings were validated. And she told him he could lay there with her as long as he needed to until he felt better. Eventually he DID feel better."

After about 10 minutes, when Ralph had calmed down, Jen asked him if he wanted water and if he wanted to sit up. Ralph gave her a high-five. Jen proceeded to let Ralph pick out a present in the gift shop, and he smiled at her. His mom couldn't stop hugging Jen.

When your child is having a meltdown—and I have weathered more than a few with Max—most people tend to stare or glare. The people who come over to you and your child or family to ask if they can help, or even nod in solidarity, are few and far between. Now, it's true that employees at Universal Orlando receive training for helping visitors with disabilities—but they are not taught to lie down on the ground to console a child having a meltdown. Jen told The Washington Post that Ralph reminded her of her 8-year-old nephew, who is also autistic, and that it had been "instinctual" to lay next to him so she could connect with him at his level but still give him his own space.

Accommodations are one thing. Being a sensitive, truly understanding human being is another. While I wish more people were this way, the truth is: nope. And so this woman deserves all the props and praise she's been receiving, and I hope she inspires empathy.

Jen at Universal Orlando Florida, you have my respect, my admiration and my heart.

Photo: Lenore Koppelman Facebook page

Friday, June 7, 2019

The Disability Blogger Weekend Link-up is gonna have some great posts

Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: A teacher gives a student a Most Annoying Male Award. Really.

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. Thanks for stopping by!

Thursday, June 6, 2019

A teacher gives an autistic student a Most Annoying Male Award. Really.

I went to a sports awards night last week at Sabrina's school. There was plenty of teasing all around. Students kidded a beloved coach about how much he yelled at them. Another coach took lighthearted digs at students. That's often what happens in these situations: you joke, in the spirit of "we're all in this together, and it's awesome."

But joking is most definitely not OK when it's at the expense of a student with autism who receives a trophy at a school awards ceremony for "Most Annoying Male." That's what happened at a school in Gary, Indiana, reports The Times of Northwest Indiana. Dad Rick Castejon told the newspaper that his 11-year-old son received that awful "honor" last month in front of his peers and the school's principal at a fifth-grade awards luncheon. When the family left the award on a table, the teacher reminded them to take it, acting as if the matter were a big joke.

What hasn't been reported is whether other students also received tongue-in-cheek awards. This is a relevant point—treating kids and teens with disabilities with equality means that people shouldn't be afraid to joke around them or even tease them in a goodhearted way. That said, this teacher absolutely crossed the line.

First of all, some people with autism can take things literally. It's very possible this young boy wouldn't have realized the so-called award was meant in jest, and may have taken the message to heart. Also, it is so, so wrong to make light of a situation that is a real issue for a child and family. The father described his son to The Times as a nonverbal boy who occasionally rocks back and forth and can easily get upset; during the school year, his teachers had regularly called the home to discuss how to best handle his behavior.

And what sort of message did being labeled "most annoying" send to this kid's peers? Well, I'd say it had the awful effect of validating that the child's behavior could be disruptive, contrary to the all-important message of acceptance and an understanding that people have different ways of expressing themselves. 

The district has extended an apology to the family, and was said to be considering firing the special ed teacher. It seems like she might want to reconsider her career. This isn't just about being sensitive to students with disabilities—it's just common sense.

Photo from Rick Castejon

Wednesday, June 5, 2019

File under: Mom fails that actually aren't

Several weeks ago, it occurred to me that Ben hadn't yet taken his school photos. I kinda sorta recalled hearing something about it. I emailed the office. Oopsie, they'd been taken a couple of weeks ago.

This is not the first time I've spaced out on this. Years ago, Max's school photos arrived home; he'd been wearing a t-shirt that proclaimed "Monster force." Which he is, so that worked out fine. Still, you'd think I'd be more on my school photo game by this point in my parenting career. Or, I dunno, less on my game because now there are three kids tasking my brain cells.

I wasn't perturbed. This is our first iPhone kid, which means we have eleventy billion photos of him stored in a cloud. Also see: "third kid." Also see: Some things are just not worth the guilt. Or make that many things. You know that old Carly Simon song "I Haven't Got Time for the Pain?" Well, I haven't got time for the guilt. This is because I'm too busy doing All The Other Stuff for them, as I once meticulously detailed in I Am The Person Who Notices We Are Running Out of Toilet Paper, and I Rock.

In the end, will any of the stuff we moms feel guilty about come back to haunt us or our kids someday? Will I look back 30 years from now at the photo of Ben wearing whatever outfit and think, Wow, you sucked as a mom? Will it matter that I let the kids eat breakfast cereal for Sunday night dinner? That Sabrina's lacrosse cleats no longer fit her and she had practice that night? That I didn't do all of the therapeutic exercises for Max that I was supposed to? That I forgot to call in for a parent-teacher conference? That I let the kids watch TV all afternoon one day because I had to get a bunch of stuff done at home?

These is the exact question I ask myself whenever the guilt beast rears its head: Will it matter when the kids grow up? And the answer is almost always N-O.

I think what happened at a Memorial Day Parade a couple of weeks ago pretty much sums up my mindset. We were sitting on the curb in a town at the Jersey Shore, watching the celebration. A Girl Scout troop walked by and tossed some chocolate candy at us, which all fell on the floor. Ben scooped every one up, opened them and popped them into his mouth. He must have eaten seven pieces in a row. Sabrina glared at me, horrified. I was all, "They were wrapped!"

Things turned out OK with the photo, too.

Tuesday, June 4, 2019

But wait: It's another best video ever, ever, ever

I got an important reminder last week about not getting complacent about Max's progress. It started when our sitter attached Ben's bike to Max's bike, and they cruised around. It was an incredible sight.  And then came awesomeness part 2: Max pedaling Ben around, bike trailer attached to his adaptive bike. Again thanks to our sitter, who's new.

The bike trailer has sat in our garage for years, unused since Max and Sabrina were kids. It took another pair of eyes to see that Max was capable of giving his little brother a ride. He even adeptly navigated a sharp turn.

I have every bit of faith in Max's abilities—when he wants to do something, he usually figures out a way. But the bike escapades are a reminder that it's up to me and Dave to keep presenting Max with possibilities.

This weekend, I was asking Ben about the initial ride they tried. "It was fun!" he said. He started talking about one of his friends. "Bennett will come over and My BROTHER will give us a ride," he said, seriously.

Oh, my heart. Ben's growing up seeing Max as the competent and caring (and ocassionally annoying) big brother who can take care of him. If only other people could see the same more often.

I took the boys out last evening, Max again wheeling Ben around in the trailer. Max seemed so proud of himself. We cruised by a group of boys playing. They grinned at Max, he grinned back and I basically grinned the whole way home.


Monday, June 3, 2019

Birth trauma memories you just can't forget, #259

"Oooh, she's beautiful." 

I sat in the funeral service, listening to the voice pouring out of an iPhone. My friend's cousin Miriam had passed. She was an ebullient woman full of light and love, the kind to handmake 400 bunny ears for the students in her school for an Easter play. She'd been sweet and encouraging to Max since he was a tot. Now her son stood on the podium holding out his phone so everyone could hear what his mother had said when she came to the hospital to meet their daughter, who'd been born at 26 weeks.

I listened as Miriam cooed at the baby. "You're perfect, just the way you are," she said, and I felt a twitch in my heart. If only we'd had someone in our life who had spoken to Max that way in the NICU.

While my mom is super-loving and effusive, we tried not to involve her during Max's NICU stay as we didn't want her to freak out (she's a professional worrier). My dad had more of a handle on what was going on, but he was a man of few words. And then, a relative stopped by and commented to a nurse, as she looked upon Max in the incubator, "My children were never like that." I wasn't there—I heard about it afterward.

Yes, someone said that. To this day, I can viscerally feel the pain that comment caused me. And  I knew that it was a bonehead thing to say, and not meant in a cruel way. Still, it felt like salt on an open wound. I was so vulnerable, so lacking in hope and full of anxiety about what the future held for Max. It's one of those things from that time that I've never forgotten.

Miriam instinctively knew the right words (see this list of 6 things not to say to NICU parents.) That day at her service, I felt grateful that her son had her to say those words to him. Miriam's spirit shone through the service. At the end, when someone quoted the Beatles lyric "The love you take is equal to the love you make," I thought: yes.

Image: Flickr/Omar

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