Tuesday, August 22, 2017

Viewing the eclipse, stressed-out-parent style

Days leading up to the eclipse: Consider buying eclipse viewing sunglasses, but get distracted by work, various back-to-school forms, figuring out how to entertain the kids before school starts, wondering when you'll pick up new clothes and shoes for them and the kajillion other things on your to-do list. Read Facebook posts about people traveling to cool places to view the eclipse and mull over the fact that you did not consider traveling anywhere to view the eclipse. Wonder if that means that parenthood has turned you into a wanderlust-less, boring human being. Stop wondering one minute later when your toddler is about to jump off the side of the couch.

Day before the eclipse: See a flurry of Facebook requests from friends and neighbors looking for eclipse glasses. Briefly consider asking husband to track some down, but get distracted by trying to remove an unknown sticky substance from your kitchen floor.

Day of eclipse: Older children head to day camp. Happily they're visiting an indoor theme park, so video games may rot their brains but the sun will not fry their eyes. Later in the day, attempt to watch live feeds of the eclipse but the screen is completely black. Realize your computer needs some sort of update, decide to look at photos instead. Whoa. 

EFOMO (Eclipse Fear of Missing Out) grips you. Are you and your family really going to skip the first eclipse in 99 years to sweep the entire country? No! First, though, you need to call and make some doctor appointments for the kids. And, wait, where is that school form you asked the pediatrician's office to fill out a few weeks ago? And come to think of it, what school supplies do the kids need, anyway? And WHY does the eclipse have to happen right before school starts?

11:48 a.m.: A friend messages you to say she bets Trump will look at the eclipse.

Husband calls a few minutes later. He has decided he'll pick up the kids from camp then dash over to a local library for a viewing.

2:40 p.m.:

Meanwhile, it's suddenly overcast outside. OMG. Is this it? Is. This. IT?! Check your local Facebook group. A woman says she has an extra pair of glasses. You text her. They're yours, for five bucks. Jump into your car, arrive at the address six minutes later, run up to the woman seated on her porch as if you are greeting a long-lost lover and grab the glasses.

Wow oh wow oh wow. That is actually the moon partially covering the sun. The hype is real.

Take a bunch of pics with your iPhone, who cares if the lens gets ruined. (That hype is not real, your lens is fine). Attempt to take photos through your glasses:

Nobody steal this photo, it's being submitted for a Pulitzer.
Continue to stand in front of the woman's home looking up. Call your husband, who has just picked up the kids, and inform him you have a pair of glasses and to head on home. They arrive at 3:45, just in time to see a small sliver of moon still covering the sun. You have fulfilled your parent eclipse duty. Later on, show them a photographer friend's incredible eclipse photo, to further alleviate your guilt that they almost missed the whole thang.

As night falls, things look a little dimmer than usual in your house. Is it your imagination? Or did the glasses not do their job? Maybe your vision was affected? Will insurance cover it?

Get distracted by the overflowing pile of laundry in the hamper, a sight you can't unsee.

Image of solar eclipse: Chad Hunt Photography

Monday, August 21, 2017

Target's new sensory-friendly clothes: What people are saying

Last week, Target.com debuted sensory-friendly tees and leggings, part of its Cat & Jack line and a first for the brand. The pieces (size 2T-5T Toddler and XS-XL Big Kids) are tagless and have flat seams and one-dimensional graphics, to minimize discomfort from skin contact. There's also more ease through the hip and a higher rise in the leggings to accommodate diapers worn by older children.

Target designer Stacey Monsen had personal motivation: she has a seven-year-old daughter with autism. The team also did research, meeting with parents and organizations. This fall, Cat & Jack will add adaptive pieces for children with disabilities—think zip-off sleeves and side openings, to make dressing easier.

Obviously, it's a big deal when a behemoth brand like Target comes out with clothing for kids with sensory processing sensitivities and disabilities. Runway of Dreams' adaptive clothing collaboration with Tommy Hilfiger has also been leading the way. Hopefully, more companies and brands will follow suit, with options for teens and adults. And hopefully, someday I won't be writing posts like this because my boy will be able to browse any rack in any major store and find clothing he can put on by himself.

I asked Facebookers to share what Target's sensory-friendly clothing means to them:

"It means that my son can wear clothing that his friends wear! He won't have to miss a math lesson because of a tag.... It means a little freedom and normalcy."—Tracy C.

"It means that I don't have to spend time 'fixing' clothes so that they are comfortable for my son!"—Lisa S.

"No more crying in the mornings."—Tegan L.

"No inside out shirts."—Kathie N.

"Need them for adults as well!"—Deb M.

"Their bigger pants for kids still in diapers means my kid might be able to wear pants that don't fall down on her tiny waist."—Debbie S.

"Including seamless socks would help us get out the door a LOT more easily."—Joanne M.

"Hopefully it means I won't be ripping tags out of my shirts, my oldest can get on the bus without a meltdown and that they will make some magical underwear that doesn't 'feel weird.'"—Cassandra L.

"No more scratching. Better yet, no more complaining and trying to rip the tag out!"—Adrianne B.

Friday, August 18, 2017

The Special Needs Blogger Weekend Link-up: Share a post! Heck, share two!

What to do if you're new here

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

Like this: This is his big brother who takes care of him, and that's how he'll always see him

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, August 17, 2017

Every therapist has new tricks

Max's occupational therapist of more than five years left us last spring. She was pregnant and planning to take a break, and also feeling like she didn't have much more to offer Max. In the past year, she'd gotten into the MNRI method (Masgutova Neurosensorimotor Reflex Integration). She showed us how to do the exercises, and I bought the handbook; some are great for relaxing Max's muscles. The ultimate goal is to integrate certain reflexes that inhibit movement. She recommended we do a week-long MNRI conference when it came to our area. I was not convinced six hours of treatment a day for five days would have a lasting impact on Max, and neither was our neurologist. Also: It cost $6750.

I knew another OT would have new tactics to try. The challenge was finding one who'd come to our home, because I work and can't hustle Max to therapies during weekdays. I put out a lot of feelers and got lucky—I found two new ones, and booked them both.

The first, Liz, came over this week. A guy was in the basement fixing our furnace, which had leaked over the weekend and flooded part of our basement. As Liz stood in our kitchen he came upstairs and said, "I hate to tell you but your washing machine flooded." Sure enough, there was water all over the laundry area. Yep, two floods in two days, unrelated. So I was distracted while she was there, and not paying attention to what she and Max were up to on the deck.

When she'd met Max weeks ago, she asked what I thought we should focus on and I told her life skills. Max's fingers often don't do what he'd like them to do, and he needs help with everything from pulling up his pants to brushing his teeth.

"You want to do that stuff, right, Max?" I asked.

He did not seem all that enthusiastic. He sometimes resists doing things himself because they are hard, and because he knows Dave and I will step in.

At the end of the session, Liz and Max walked in as I was on the hold for getting a washing machine repair scheduled.

"Max, do you think your mom can guess what we spoke about?"

My first guess was Las Vegas, Max's December joy trip with Dave and his grandpa.


Going to high school?



Ding ding ding!

"Max, tell your mom what we spoke about," she said.

Max said a word I didn't understand. Liz presented a red piece of construction paper with a list, and I scanned it. Ah. He was saying "strong." As in, he wanted to get stronger so he could be a firefighter.

The list is titled "Things Fireman Max wants to do by himself." They include: Getting dressed, from his undies on up; brushing teeth; cooking; using his right hand more; and getting stronger so he could climb a ladder as a firefighter.

"This sounds great!" I said. "You need to do all of these things to be a firefighter. Because you want to live in the station, right?"

"Yes," he said.

Max's old therapist had gotten him to move around by reenacting fire scenarios. I loved how Liz was tapping into his firefighter aspirations to give him intrinsic motivation to work on life skills. As I know well, nothing happens with Max until he's ready to make it happen—and he wants to.

Firefighter training happening at our house, soon.

Wednesday, August 16, 2017

This is his big brother who takes care of him, and that's how he'll always see him

We inherited a swing set from friends this summer. Ben loves the swing, and Max loves pushing him. It makes me really happy to watch the two of them together, and see their relationship blooming. Unlike some people, Ben sees Max for who he is.

Max and Sabrina are always watching over Ben. "No, Ben!" Max informs him when Ben tries to use the couch as a jungle gym. "Benny! You're going to get your fingers stuck!" Sabrina says as Ben opens and shuts all the doors. "Benjamin! Eat the pasta!" Max cajoles him at mealtime. 

Ben doesn't yet see any difference between his older siblings, other than the fact that he's now able to point out who's a boy and who's a girl. Perhaps he never will. All Ben knows is that he's got a brother and sister who look after him, play with him, squeal when he does something cute and generally love him to pieces.

As he grows up, Max will be that same person in his eyes: a brother who is there for him. He will likely have questions about his cerebral palsy, but he won't think of Max as special or treat him with kid gloves, as is true of Sabrina. (Hopefully, he will stop trying to bite Max when he gets on his nerves.) He won't think of Max as someone who can care for him "despite" the cerebral palsy—how it seems people sometimes view people with disabilities.

I've heard it implied so many times over the years:

Wow, he can play tee-ball! [Despite his disability.]
And he can ride a bike?! [Despite his disability.]
And he can use Google and email? [Despite his disability.]
And he's learned to read and write! [Despite his disability.]
And he's so happy! [Despite his disability.]

Thinking that someone achieves things "despite" a disability unintentionally demonizes disability, making it out to be a nefarious force when, in fact, it is an organic part of a person. Having a disability is not all of my child, but one aspect of who he is. Too often, people can only see that one aspect.

To be sure, Max has challenges to overcome. And it's true that as his mom, I don't take his accomplishments for granted, something instilled in me from the doom-and-gloom predictions at his birth. Still, the way I see Ben treating Max makes me wish that people treated Max more typically. Not someone who succeeds "despite" his disabilities, but someone who is the whole package of challenges, competence, abilities and potential, like any one of us. 

Tuesday, August 15, 2017

Adventures in pre-op testing: You can't make this stuff up

I was not looking forward to taking Max to pre-op testing yesterday morning for his upcoming surgeries. Sitting around in a hospital waiting room then watching your child get bloodwork done is never a fun thing. The upside: I could show Max where he'd be getting surgery, and allay any concerns. The whole experience turned out to be the best medicine for him, not to mention, an education.

We were there on the dot at 7:30 a.m. thanks to our favorite 6:00 a.m. alarm clock, Ben. Happily, the form had a place for nicknames. "Fireman Max?" the nurse called out across the crowded room, and Fireman Max stood up with a great big grin on his face and dashed inside. He handled the blood draw like a pro. "That was easy!" he declared. "My brother is a firefighter," the nurse mentioned, and Max lit up. He was fascinated by the EKG, and asked if my heart was working well, too.

As the nurse ran through a list of questions, she told us that her father had been a volunteer firefighter. Max pondered that, then looked at me and said, "Your daddy died."

I was not prepared for that, and tears sprang to my eyes.

"Yes, my daddy died," I acknowledged.

"Why?" Max wanted to know.

"He was very old and he got sick," I explained.

"Are you going to die?" Max wanted to know.

The nurse sat there patiently, watching us.

"Max, can we talk about this later?" I said. "Some things are better to talk about at home."

But he needed to know right then.

"Are you going to die?" he repeated.

"Not for a very long time, I hope," I told him.

"Daddy?" he asked.

"Daddy is healthy and is not going to die for a long time, either, we hope," I answered.

He seemed satisfied with that. Then we had to give a specimen, a new experience for Max. Waiting around lead to a discussion about pee and poop, and how food and drinks pass through your body. Later, when we were back in the exam room and talking to the nurse again, I excused myself to use the bathroom. Max informed me that I had to pee in a cup and we both burst out laughing.

Max needed more time to go, so we cruised around the hospital lobby, stopping to chat with the elderly man playing piano beautifully. The top was open and Max watched how the hammers hit the strings, fascinated. Next we hit the café. Max grabbed a box of Rice Krispies, and asked for a lot of milk. He said that he wanted to pee out milk.

As we waited for the urge to hit, we walked in and out of the pre-op area. By then, people who worked there were greeting Fireman Max by name. We took an elevator up to one of the floors where they do surgery, and glanced around. Max seemed cool with it.

Then we headed outside and Max started gesturing excitedly to a red ambulance parked at the ER and saying a word I couldn't understand.

"It's an ambulance bringing someone sick to the hospital," I said.

Then I realized he was saying our town's name. An ambulance from our town's fire department was parked right at the ER.

We walked over and soon, two firefighters walked out the front doors. "Hi, Fireman Max!" one said, like it was the most natural thing in the world for Max to be hanging outside the ER.

I explained Max was getting some testing for upcoming surgery, and asked him to tell Max about the hospital.

"This is THE best hospital," he informed Max—the best seal of approval we could have gotten. I felt like it was a sign of good things to come.

Max finally went, handed the glass tube over to the nurse and gave her a big high five. "See you soon!" he said. On the way home, he told me the hospital was "good." So, here's hoping he'll be calm when surgery happens two weeks from today.

For the rest of the day, whenever Max had to use the loo he asked if he could pee in a cup, and then he cracked up. I did, too.

Monday, August 14, 2017

It's a good thing when your child's not thrilled to see you, right?

Dave, Ben and I picked up Max from camp yesterday. The three of us had a nice few days at a resort in Pennsylvania, but by the time we were en route to get Max I couldn't wait to see him. That last five minutes on the gravel road to his camp took forever.

"I hope you guys have a ton of tissues...." his program director had messaged me that morning. I'd already figured Max would be weepy, as he loves camp. We pulled up, the gate opened and we cruised to his bunk. He was waiting outside, with a bunch of counselors, looking remarkably calm. I grabbed Ben out of his car seat and started walking over.

"MAX!!!!" I shouted, excitedly.

He glanced at me and Dave, then turned to talk to a counselor.


I didn't have a parent existential crisis or anything but still: Not even a "Hello!" Last year when we picked him up, he ran to me and gave me a big hug. I decided it was a good thing that Max wasn't enthusiastic about seeing us, a sign of a great summer and independence. Or at least that's what I told myself.

I gave him a big kiss. He wanted to know if he was coming back next year. I said yes. He lit up when I showed him the confirmation for plane tickets to Las Vegas, his upcoming joy trip with Dave. He got upset when informed it was for four days, not his fantasy of ten, but cheered up by the time we left.

On the way home, we stopped at a cafe for French onion soup, a Max fave. We hit a Starbucks and he got some mood-enhancing whipped cream (yes, straight up). We chatted about what he'd done at camp, the friends he'd made, what he'd be doing in the upcoming weeks and starting school in September. I'd heard through the grapevine he didn't do his school worksheets because he was too busy socializing with a bunk of girls his age. He said that was true. I thought, awesome. 

Max giggled as he listened to Ben's new words: School bus! Big truck! Pool! Knee! Choo choo! Cookie! Mommydaddymommydaddy! New! More new! He squeaked a dinosaur when Ben got fussy and handed him the toys he dropped. He was duly impressed when I asked Ben to make a fire truck sound. He cracked up when Dave told him that next year, he'd be attending Peanut Butter Camp. (Max is highly allergic to the stuff). As is customary on trips, Max informed us we were going the wrong way as he thinks he knows better than the navigator. Sometimes, he does.

Dave took Max out for sushi when we got home. I said goodbye from the back porch and Max said, "Mommy!" and threw open his arms for a hug.

"I love you," he said.

His shoulders almost came up to mine and suddenly, I knew for sure just how big my boy is getting.

Friday, August 11, 2017

The Disability Blogger Weekend Link-up: Put 'em up, please

What to do if you're new here

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

Like this: The debate about the firefighter hat and letting our children be themselves

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, August 10, 2017

The surgeries are coming

Years ago, when I first found out that some children with cerebral palsy undergo surgery to alleviate muscle tightness, I worried about whether Max would need it, as I worried about everything concerning his future. In a few weeks, it's happening, along with another surgery I hadn't imagined Max would ever get.

For a while now, Max's left foot has been turning inward. He's mostly steady on his feet but occasionally trips, which can be particularly dangerous because his arms don't shoot out to cushion the fall. He gets tired when he walks any great distance. When you have the spastic form of cerebral palsy, as you grow muscles and tendons can shorten (called "contracture"), resulting in gait and mobility challenges. As a child physique changes, the web of tissue that surrounds muscle and tendons, myofascia, can tighten up and become restrictive. When cut, the muscle beneath can stretch and lengthen for better agility. It's often done at the back of the ankle to alleviate calf and heel cord tightness.

A couple of years ago, a parent had told me about an orthopedist, Roy Nuzzo in Summit, NJ, who specializes in Selective Percutaneous Myofascial Lengthening, SPML. This form of lengthening, done under general anesthesia as an outpatient, involves micro-incisions. The benefit is that less scarring forms, a good thing since scar tissue can cause recurrent contracture.

During our consult, Dr. Nuzzo asked if we wanted to also remedy Max's tendency to drool, given that he would already be going under general anesthesia. We have never succeeded in stopping it. The wetness makes his face chapped during winter and soaks through shirts when he does not wear a bandana. Botox injections to the salivary glands didn't do the trick (although I still think someone should open a Mommy and Me Botox clinic). Once, I took Max to see a doctor who reversed salivary glands so fluid would flow back into the mouth, but it seemed pretty extreme and I didn't want to subject Max to it. A couple of times, I got a prescription from Max's neuro for the scopolamine patch, which is used to treat sea sickness and is also effective for drying up the mouth. The boxes of patches sat in a cabinet in our kitchen, unused until they expired. I couldn't bring myself to medicate Max if it wasn't critical and, just as importantly, he himself didn't ask to remedy it.

Last February, we had a conversation about it after he made a comment. And then, a few months later, he point blank said to me, "I don't want to drool." I am not sure what triggered that, but as he's getting older he's become more aware of his body. While he did not specifically say he doesn't like it when people stare, and I wasn't going to point that out, I wondered if it was part of it.

Dr. Nuzzo told us about an ENT, Stephen F. Freifeld in Springfield, NJ, who does a surgery for drooling  called tympanic neurectomy that involves going through the ear canal and dissecting the tympanic nerve, a supplier for a major salivary gland. We did a consult and while Max was on the older end of youth he'd treated, he thought we could get good results. (He wasn't sure why younger kids had better improvement in drool control.) There would be minor discomfort for a couple of days; recovery is typically quick. The downsides: mouth dryness,  As with the patches, the resulting downsides could be dryness of mouth and a ruptured ear drum. The doctor noted both were rare among the two hundred plus patients he'd operated on.

Although studies of children with spastic cerebral palsy who'd had SPML were small, including this one that examined 58 kids, they found no complications and improvement. Several parents I connected said their children had excellent results from Dr. Nuzzo's surgery. The studies done on tympanic neurectomy were even smaller and pretty old, but positive. I looked up both doctors on the Federation of State Medical Boards, and no actions had been lodged against them. I double-checked their credentials on the New Jersey Division of Consumer Affair to see if they'd had any malpractice suits, disciplinary actions in state or out or other issues. Both got a clean bill of health. Max's neurologist and pediatrician gave their OK.

I also did due diligence with Max. I explained that he'd go to a hospital and doctors would do an operation to help his foot and his drooling. I reminded him how he used to get Botox injections when he was younger at a hospital, and that he'd be asleep when they did them and wouldn't feel them. I showed him the expired box of patches that he could choose to wear behind an ear instead of one of the surgeries. Did he want to get the surgeries? He said yes.

One of the biggest responsibilities you have as a parent is making decisions about healthcare for your child. These surgeries, particularly the one for drool reduction, are not essential. General anesthesia is involved, and while it's considered very safe these days, still: anesthesia. While Max was in on the decision and I did my best to explain the procedures, am I sure Max fully got it? No. (I'm thinking that when he's back from camp, maybe I'll do an "operation" on him using Ben's toy medical kit to help him better understand/soothe his nerves...or he can operate on me.)

Still, the benefits of these surgeries seemingly outweigh the negatives: Max will have a lower risk of an injurious fall, why we'd rather do the SPML sooner rather than later (and he is getting too old for the other surgery). Both surgeries are less complex and involved than others of their kind. There isn't significant discomfort or recovery time. By having two of them at once, Max will avoid undergoing another round of anesthesia. His drooling will be less of a nuisance to him, and less of a social impediment.

All in all, Dave and I believe these surgeries will improve Max's well-being, quality of life and comfort. As always, we hope we're doing right by him..and we hope for the best.

Wednesday, August 9, 2017

The Starbucksization of our town

A Starbucks is opening in our town soon, a happening that's been as hotly debated on my local Facebook group as anything our president does. I've had mixed feelings. (About Starbucks.)

If I had to choose between coffee chains, I'm Team Dunkin'. Dave is Team Starbucks, so he's psyched, but I find their coffee bitter. While I like Fraps, my waistline sure doesn't. My favorite is their shaken iced tea (Passion Tango), and when cravings strike it's easy enough to grab one from the town a mile away. I get my iced coffee (Jamaica Me Crazy) from the coffee shop in town I've frequented for the 15 years that we've lived here. Some Facebook commenters worried that it, along with the coffee-serving bakery shops, will suffer from lost customers.

I love our town's core shopping district, with its mix of independent stores. It's charming and old-school awesome. I enjoy buying gifts at the toy store, where the owner, Erin, always has cool recommendations, and browsing in the bookstore with the kids. We have no McFood places because of an ordinance restricting fast-food chains; town officials said Starbucks isn't one, but perhaps they were buzzed from their double-shot ventis.

Other commenters pointed out the positives, like new jobs—one woman posted that she was going to be working 20 hours a week, with good benefits and plenty of time to spend with her girls. Someone noted that towns need to modernize, and that when ours first got a nail salon there was an uproar. This Starbucks will stay open till 10:00, unlike the coffee shop that closes around 7. And because it won't serve a full menu of food, people don't believe the coffee shop will be affected.

One person hoped this was one of the Starbucks that serves wine and beer. But: no.

In the end, I don't think we're on the verge of a coffeepocalpyse. The Starbucks could attract more visitors to town, who might then shop at other stores. Not for nothing, people looking to move to our town are more likely to be excited than alarmed by its presence. Those like me who already have their preferred fix for caffeine will likely stay loyal, and the Starbucks crowd can have their Frap and drink it, too.

Tuesday, August 8, 2017

Isn't this what we all want for our children?

Last week I got this photo of Max sitting at a potter's wheel, in camp. I stared and stared at it, happy to see him so happy and excited to see him using his hands that way.

Max skipped the extended school year this summer in favor of a string of camps. Part of me worried about him missing out on classes. Yet I wanted him to enjoy camp, something you can only do when you're young.

By all reports, Max was having a whole lot of fun. But just as thrilling, and skipping-school-affirming, was to see him doing an activity that's new to him. Away from us, I think he's more open to giving different things a go. Sabrina's the same, gung-ho to do new water sports at her camp and try her hand at crafts.

We want our kids to thrive in school, of courseofcourseofcourse. But I get so revved when mine have the chance to explore without being accountable—no expected outcome, no deadlines, just a chance to open their minds and expand their horizons. To me, camp is just as much of a learning experience as sitting in a classroom.

Which is all to say: camp rocks; we're grateful to the programs that exist for Max because even though there should be a ton, relatively few camps are open to kids who need help with life skills; and as psyched as I am for Max to start high school (HIGH SCHOOL!), I'm refusing to think about the start of the school year.

Monday, August 7, 2017

The debate about the firefighter hat and letting our children be themselves

Max took his "Fireman Max" hat to camp. "Max, do you really want to wear that?" Dave asked. It was a rhetoric question, because Dave and I both knew what Max's response would be: "Yes!" Max is wearing it in practically every photo I've seen of him at camp. 

For several years, Max wore his trusty firefighter hat—a durable plastic number purchased from Amazon—nonstop except to school, in the shower and to sleep. At first, I thought it looked so cute on him. (OK, I still do.)

And then, it was just part of him. I never gave it a second thought, except if we were out and I noticed kids staring and adults smiling. It's been an incredible conversation piece, because we've regularly met people with relatives who are firefighters and who like to discuss them and Max's firefighter aspirations. 

Max is now 14. And Dave's had concerns about the firefighter hat making him look immature. I get where he's coming from: We'd both like Max to connect with peers of all kinds, including ones without disabilities. When Max was 8 and deep in the throes of his purple phase, I wrote about not buying him a pair of purple sandals at Target because I wanted him to better fit in.

And now, the firefighter hat. He's mostly stopped wearing it (sometimes, he likes to wear a cap our local fire department gave to him), but he wanted to take it to camp. It's how he IDs. He is Fireman Max, and he wanted to make sure his fellow campers knew. I was cool with that. Dave had mixed feelings. 

The other day, a friend posted a pic on Facebook of a tee in Target's men department that she wanted to get her teen son, who has Down syndrome and autism. The shirt had a picture of Belle holding a book with the caption, "My weekend is all booked." This has particular relevance to her son, because Peg excels at making fun plans for him, and he loves all things Disney. For a split sec, she wondered if a boy should wear Belle. 

It was her oldest daughter who nailed it, noting that her brother wasn't raised with any notions of what's "male" and what's "female." As she noted, "He does what he likes without any bias. It's the way we all should be." Another mom piped up, "If something makes you happy, screw whatever preconceived notions are out there!"

As I read the comments, it occurred to me that if Sabrina wanted to wear some out-of-the-box accessory, we'd let her. Max deserves the same. He doesn't care what other people think; why should we? He will relate to his peers in whatever way he chooses to.

I talked about it with Dave over dinner last night. He knew, of course, that the hat makes Max happy. He grudgingly agreed we couldn't control it. 

Firefighter hat for the win.  

Friday, August 4, 2017

The Disability Blogger Weekend Link-up: Attention, please!

What to do if you're new here

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

Like this: Dear world: No, we will not keep our children with disabilities at home

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, August 3, 2017

Creative reading: 5 easy ways to boost children's comprehension

Passing along my love of reading to my children has been one of the greatest pleasures of parenthood, other than having to read Goodnight Moon every evening for the past two months to Ben. Over the years, I've found ways to encourage engagement: Read in silly voices, ask the kids questions about the book and pictures, read a new book then have them guess the title. And now, I've picked up some new tactics for comprehension, thanks to this post created by education.com and adapted for the blog. 

When Dolly Parton started the Imagination Library program, she wanted kids in her home county of East Tennessee to feel the magic that books can create. That magic comes from reading with imagination. Indeed, reading is powered by imagination. It's an active process that generates vivid and stimulating experiences. These are some ways to help children better comprehend what you read together, harnessing the power of their imagination.

1. Play: Guess What Happens Next? 
Anticipation brings out the drama of a story. Stop at an interesting point in the book and ask your child how they think the story might develop. Encourage multiple predictions! The more goofy, improbable and fantastic they are, the more they get the creative juices flowing. When you resume reading and learn the plot, discuss the various predictions.

2. Make Figurative Language Literally Interesting
When you come across figurative language, spend time on the literal image. For example, discuss how two peas in a pod look. Search Google Images or grab a pea pod from the fridge and open it, then together make observations about what two peas in a pod are like. Connect your discussion to the figurative meaning in the story, noting if there are other places that are about two peas in a pod.

3. Draw Some Pictures
Using crayons or markers, draw two different scenes in the story, two different characters or two different objects. The pictures can be as detailed as your child wants to make them, and he or she can add elements of their own. Discuss the drawings.

4. Wonder Whether The Story Has To Be That Way
Teachers frequently stop and ask, "What in the story caused this to happen?" when they're teaching reading, to enable students to understand cause and effect. Try a question that can be even more thought provoking: "Is it possible what happened could have happened in a different way?" Your child can come up with changes to the story, exploring multiples causes and their effects.

5. Create A New Moral
Many children's books have morals to them. Let's say the purpose of the book you're reading with your child is to show that friendship matters more than money. Talk about that with your child, then expand that moral. For example, maybe it's that friendship and having a good time matter more than money. Talk about how the story would be different if you added that twist. Discussions like these expand children's reading comprehension, and make reading more fun, too.

Image of peas: Julie Jablonski/Flickr

Wednesday, August 2, 2017

This catalog cover gets diversity right. Do you get why?

Workplaces, universities and advertisements all strive for diversity. They typically fail, because of one omission: people with disability. In fact, a report released yesterday that examined 900 films found that just 2.7% of all speaking characters were depicted with a disability—although 18.7% of the U.S. population identifies as having a disability. 

This lack of diversity is glaring to parents like me, who have children with disability, as well as people with disability, I'd imagine. And so, when I come upon full-fledged diversity, I get gleeful, like I did when I saw the cute blonde grinning on the cover of one of the latest Kohl's catalog. "I didn't even notice that one of the kids on the front cover has DS until about the third time picking it up," says mom Susan Osborn Hoyt, who shared the photo on Facebook. "This is inclusion." Put another way, this is equality.

Inside the catalog, there's a young woman modeling clothes who also has Down syndrome.

While there's been a slight uptick in recent years of youth with disabilities in catalogs, including Target's and Nordstrom's, and on the runway, too, it's still not the norm. Someday, hopefully, it will be standard practice to include children with disabilities in ads, on TV, in movies—and everywhere. Someday, hopefully, workplaces and universities will also be truly diverse. For now, I'm glad to give credit where it's due and encourage more, more, more. 

And so: Thank you, Kohl's. Keep it up! 

Speaking of which: Wouldn't it be even more awesome and diverse if there were a couple of kids with disabilities of various kinds on your cover next time, plus more inside the catalog, too?  

Also: Add that diversity to your website? Like, hint, the homepage? 

Not to be ungrateful or anything. But: DIVERSITY! 

Word to other companies: Hellllooooooooooo.

Image: Susan Osborn Hoyt

Tuesday, August 1, 2017

Dear world: No, we will not keep our children with disabilities at home

Over the weekend, a nasty incident trended in social media. It involved the r-word, quoted below. The similarly nasty sentiments behind reactions to what happened may be familiar to some of you.

A couple had brought their four-year-old with developmental delays to a Yankees game. They captured it on video when a guy sitting in front of them turned around, after their boy likely kicked his seat, berated them and said, "Because your eff-ing child's retarded."

That's pretty despicable. So were some comments made when the NY Daily News posted its article on Facebook. "If this child is so sensitive and disabled, why did the parents bring him to a packed sports game?" asserted one guy. "Why would you take a developmentally disabled child to place that has screaming, yelling, people jumping around plus loud music and commentary?" noted another.

What?! The answer, of course, is: Exactly why you'd bring any child to a baseball game.

Here's how parents of children with disabilities and adults with disabilities responded when I asked them to explain, on Facebook, why a child with disabilities has the same right as anyone to enjoy public activities, events and spaces. I can't believe we even have to discuss this, let alone defend this, but sadly, we do.

"My goal–actually, I see it as my duty—as Amber's mom is to be sure she has a good life. That includes having fun doing things that all kids, teens and young adults enjoy. The reason being ADA is that all places, spaces, facilities and fun stuff needs to be barrier-free and accessible to everyone. We have a minor league baseball game in our county and Amber loves going to games. I would rather watch moss grow, but I don't go for myself. I am a mom, so I go because it makes my (adult) kid happy."—Teresa B.

"Our children can't learn to cope in environments that are difficult if they aren't exposed to them. If my child was loud, kicking a chair or seeming to be disruptive, usually I have said something like 'My son has autism and we are trying to figure out how to enjoy this movie/restaurant/baseball game/amusement park/etc.' For the most part, people have been respectful but I have had the 'If they can't behave, they shouldn't be here' comments to which my response is something along the lines of, 'Being rude isn't really behaving but they let you in."—Tracy C.

"Because our existence is not an inconvenience. Because your discomfort does not override our right to exist in public and enjoy public events. Because when your non disabled child yells or kicks a seat, the general public does not wonder why that child was allowed out of the house. Because we can."—Tara C.

"We've taken our son to NBA and NHL games regularly for nearly 20 years. We started as he loves watching the games on TV—even at a young age, he knew the players' names, jersey numbers and positions played. He developed an interest in both sports, and what parent wouldn't want to build on that interest?"—Lisa P.

"My daughter is a human being. That's why she has the same rights as anyone else to be anywhere in public. We had a moment in Ikea just the other day, when my daughter accidentally grabbed a display item and it couldn't be rung up. It was a Saturday morning, and there was a line of fifteen people behind me. It was just a notebook, nothing we needed. My daughter was working hard to process the disappointment, but what the world saw was this 14-yr-old yelling and storming off only to come back to yell some more. However, the young man behind me stepped in and offered to run a mile through Ikea to get a replacement notebook. I even said 'It's like a mile away' and he said 'It's okay, my sister is like your daughter.' Lucky us, we got the guy who 'got it' behind us in line. However, my daughter managed to process it all terrifically, and no new notebook was necessary. And I got to leave both proud of my daughter, but reminded that for every jackhole who yells at a 4-yr-old at the ballpark, there's this guy, willing to run a gauntlet for strangers."—Phoebe H.

"I work with kids both with and without additional needs (and I majored in special educaiton as well) and all I can think of is that my students should enjoy the same things as everyone else! My students, no matter what their background or needs or talents, all have the same rights. Kids are kids are by no means perfect. They are loud, they are squirmy, they are just trying to live and enjoy life like the rest of us. I hope that this event does not deter her or other families with kids with additional needs from going out and letting their kids know that they are valuable members of society. Don't let the haters get ya down!"—Priscilla B.

"We bring him because if all he has are limitations, he will never find his abilities."—Jill M.

"There are so many things my son can't experience like other kids that when we find something he enjoys, I'm not willing to deny him that feeling on the off chance that he might annoy someone. I am good about being proactive and introducing ourselves, and him, to people around us who might be affected if he gets loud (which is rare) and to just let us know if he's bothering them. So far, people respond very well to that and we haven't really had any problems. Knock on wood."—Amber M.

"I flew with my son who has CP and athetosis, constant movement. He tried so hard not to kick the seat in front of him, but it happened. The lady yelled at him to stop. I let it go the first time. The second time I told her, 'I will tell my child what he needs to do....' I have a shirt I used to put on him that said, 'Keep calm, it's only CP."—Alicia M.

"I take my children places that I think/hope they will enjoy. With my son's developmental delays and sensory issues (autism), sometimes things don't go as smoothly as I would like. However, if he doesn't have the opportunity, he won't learn how to behave in different situations."—Janet D.

"If you don't want to interact with all members of society, you have the right to be the one to stay at home."—Stef D.

Monday, July 31, 2017

Running away from home is good for you

Thursday, something amazing happened: I took a trip with my two best friends from college, Hedy and Wendy. Amazing because we had great fun, but also because we actually made it happen. It's been about twenty years since we went away together. Incredibly, we are all only 23 years old!

The timing worked: Max and Sabrina are in camp. Ben promised he wouldn't jump off the couches if Dave watched him for four days. OK, technically Ben didn't promise that but he and Dave were out and about in the park, the zoo and other places with no couches to jump off of, so all was good.

We headed to Saratoga Springs, New York. We stayed at an old hotel that was supposed to be charming but was mainly just old but who cared. We got massages then lounged at the gorgeous pool in the state park and tried to be deviant by sneaking in a bottle of wine only we didn't have an opener. We ate really good food and really good bad food (hi, gigantic cinnamon bun at Sweet Mimi's). We browsed cute shops and a farmers market. We took a ranger tour of the state park. We Facebook-stalked and Google-stalked people we'd gone to school with. We sampled honey and cheese and wines and water laced with turpentine or, rather, how naturally carbonated water from the mineral springs tasted to me, although it is said to have health properties. The still, spring water from the State Seal Fountain was seriously good—locals lined up to pour it into jugs.

We were not on any schedule, another highlight of the trip. Also: I left my computer at home and otherwise attempted to unplug.

I felt relaxed, rejuvenated and happy very so much, as Max would say.

I wondered: Why should it take a trip away to make me feel this good? How often does that happen? (See: Once every 20 years.)  Don't I deserve to occasionally put my own needs ahead of my family's? Doesn't that analogy about the importance of putting the oxygen mask over your own face before you place it on your kids' make me roll my eyes but yet: so true?

Then I came home and spent three hours doing chores.

Still, if I don't find the fun, no Fairy Fun Godmother is going to help me.

In other words, if you'd like to go taste wines, I'm in.

Friday, July 28, 2017

The Disability Blogger Weekend Link-up: It's go time

What to do if you're new here

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

Like this: When a store employee made fun of her son, this mom did the most amazing thing

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, July 27, 2017

See Ben run. Run, Ben, run!

At 21 months old, Ben is exploring everything he can get his hands on and anywhere he can go. He runs, not walks, most places. If he's in the kitchen and wants to get a toy from the living room, he zips in there. If I tell him to grab his sandals because we're headed outside, he dashes over to the shoe tray by the back door. When we head to the park, he trots there. 

This running: It brings me so much joy. While I consciously don't think it's because I didn't get to go through this with Max, maybe there's a vestige of that. (At 21 months old, Max was commando crawling, which we were thrilled about.) Either way, it's ultra-adorable and reflective of this time in Ben's life, when he's just so excited about everything:

Oooh, watermelon! I shall prance around with a piece of it in my hand to express my excitement!

Yippeeeeee! A garbage truck! Outside my window! I shall do laps around the foyer because this is so giddy-good!

What is this metal thing on the floor with holes? Grate? Wha? I think I shall zoom back and forth and back and forth over it because it makes a funny noise! Ha ha ha!

Oh! Mommy is in the bathroom! I shall run away from Daddy and bang on the door because she should not be in there by herself! 

I mean, the moonwalk was pretty impressive. But the the way Ben flaps his hands when he runs kills me every time. He also likes to babble as he goes: "Yoyoyoyoyoyoyoyo!"

I see it and hear it and I feel his toddler-ness, and I ache for him to stay this age.

Wednesday, July 26, 2017

When a store employee made fun of her autistic son, this mom did the most amazing thing

Stacey Gluberman Trotti was scrolling through her Facebook feed one morning in late June when she came upon a disturbing post a friend had shared. It was written by a young woman standing in line at a Dunkin Donuts. The two teens in front of her had been laughing at a young man seated at a table nearby who was making noises and tapping on the wall. When they put in their order, the employee behind the counter—who'd also been laughing at this young man—handed them their coffees and said, "Here's our entertainment for the day, bright and early."

Horrified, Stacey realized the young man they'd been laughing at was her son, Jake, an 18-year-old with autism who stims with humming and tapping. He and his aide, Lisa, regularly stopped by this DD as part of their morning routine.

As soon as Lisa arrived that day, Stacey showed her the Facebook post. Yes, Lisa confirmed, that was them. She said she'd chosen to ignore the teens; she hadn't realized employees had been involved.

"Thankfully, Jake didn't understand that people were making fun of him. I was angry, hurt and disgusted—all of the emotions," says Stacey, who lives in Long Island, New York. "But I didn't lose it, I went into advocate mode. I wanted to get over there and address it."

At the store, she told the general manager what had happened and how disgusted she was. She wasn't alone: "Apparently, other people who'd seen the post on Facebook had come in and said things, and the store was also getting phone calls," she says.

Back in her car, Stacey says, "I broke down. As I sat there, the owner called. He was very upset, and said he'd investigate what happened. Then I went home and cried more. When I told my daughter, who's 15, what happened she also got upset. She is very protective of her brother—she always wants to confront people who stare."

Stacey shared the post on Facebook, noting, "I have to be my son's voice/advocate and unfortunately educate others.... Let's hope that some sensitivity training is put in place. That's the only good thing that can come from this."

After more pondering, Stacey called the owner back. "I told him something else needed to happen besides an apology," she says. "I wasn't sure what. But I didn't want it to be just me complaining about one issue—I wanted it to be for the good of our children." Meanwhile, her post went viral, and she was comforted by what she describes as "a tremendous outpouring of support from the local autism community."

Soon after, a friend connected her with the Nassau/Suffolk chapter of the Autism Society. Stacey spoke with the head of it, Suzanne Reed, and they scheduled a meeting with the owner to see how they could move forward. That took place in early July.

The owner had reviewed the videotape and saw the smirking employee. He informed them that he'd been removed from the store. The women also found out that while employees view a 15-minute video involving how to treat customers with disabilities, it featured only people with physical disabilities. "We had to explain to him that people with autism can look typical," says Stacey. "My son may look like a young man but he's childlike and he stims. Employees need training about that."

The owner was interested in training for his store, as well as others in the area. Stacey, a social worker at a school for children with disabilities, has offered herself up; she might partner with a staffer from the National Autism Society down the road.

"I really appreciated it when the owner said, 'Where parents fail, society needs to teach the kids,'" says Stacey. "He felt really badly. He also talked about doing education in elementary schools and bringing in donuts. And we discussed the possibility of having a person with a job coach do some work at the store."

It doesn't matter which Dunkin' Donuts this occurred at. It could have happened at any store, anywhere. It was revealed because a caring young woman spoke out against the egregious behavior she witnessed. The owner was appropriately apologetic. responsive and prepared to make good. Still, it does make you wonder about what kind of disability awareness training employees in this country receive. Stores and companies would do well to make sure staffers understand the basic tenets of respecting customers of all abilities.

Also, a word to clueless people who think it's amusing to make fun of people with disabilities: If your boss doesn't catch you, social media just might.

Jake and his aide recently returned to the store, says Stacey, "and he was treated like a king! The employees were very friendly. Jake likes to flick string, and one of them asked why he did that. I was glad she asked. "

Although Stacey's sad that this happened, she's pleased with the outcome. "A part of me thought, I don't want to deal with this, but then I thought, I have to educate people and let them know it's not OK to ridicule children, teens or adults with special needs," she says. "It's bigger than just me and Jake. It's about treating any kid with autism with respect. Our children are out there—at the gym, at the beach, and in society with everyone else. You can't control the customers, but you can teach employees."

Tuesday, July 25, 2017

The lesson of the pizza bowl fail

Max snookered me into getting him pizza the other night. I'd promised him frozen yogurt, but I hadn't had time to eat dinner after I got home from work and said I wanted to first grab a slice. "I want pizza!" he announced, even though he'd already had dinner. And so, he had pizza as an appetizer for his dessert, or something like that.

Pizza is not an easy food for Max to eat; because it's thick and chewy, it can pose a choking hazard. At home, we shred it with Tiny Bites Food Shears. When we're out, I use a knife and fork then dump the pieces into a bowl for Max to scoop out, with a square of tacky Dycem beneath it for stability. And so, I asked the guy at the counter for a fork and knife and carved up a slice. Just as I was about to slide the bits into a bowl, Max pointed to the paper plate.

"Max, it's easier to eat from the bowl," I pointed out.

"No!" said Max. He wanted to eat the pizza off the plate. So I slid it over to him, then watched in awe as Max speared the pieces and chewed them well.

As I sat there, it occurred to me that I don't always know what is best for Max, especially as he's getting older—both because he is evolving, and because he can now tell me what's best for him.

This is a hard thing to wrap your head around when you have done so much for your child over the years: the therapies, doing exercises at home, the specialist appointments, modeling how to move and talk and play, yet more therapies, pushing to get him into programs. So. Much. Pushing. And while there is only so much you can do to help your child develop, you take heart in knowing that you are doing everything within your powers.

And then one day you are in a pizza joint and realize that your boy is reaching the point where you realize he is capable of co-piloting his present, and future. Yes, he has been voicing opinions and preferences for years, but he hasn't had much to say about his physical challenges until now. And he is telling you what he wants and needs, and you should listen.

I have no idea what it feels like to have cerebral palsy and fingers that don't easily bend. If Max is telling me that picking up pieces of pizza is easier done from a plate than a bowl, who am I to disagree?

And that, my friends, is the lesson of the pizza bowl fail...and win.

Monday, July 24, 2017

This viral story could help change attitudes toward kids with disabilities

You may have read the recent viral story about a woman who comforted a child with special needs having a meltdown on a plane. In some ways, I wish it hadn't been such a big deal. In other ways, I'm hoping it will have an impact on people—something nobody wishes more than the woman involved, who I spoke with yesterday.

Rochel Groner and her husband, Rabbi Bentzion, run the Friendship Circle in Charlotte, N.C., and ZABS Place, an upscale thrift boutique and employment training center for people with disabilities. They were on a plane headed to New York from Tel Aviv, escorting a group of young adults home from a trip. Max has participated in the Friendship Circle since he was five, so I have no objectivity here—just a whole lot of admiration and appreciation for their programs for youth with disabilities. (Last week, in fact, I toured Lifetown, a gigantic, game-changing center in Livingston, NJ, with recreational, therapeutic and educational facilities.) The flight had been delayed for hours, and people nodded off. Rochel was awoken by a noise coming from a child several rows behind her. The sounds grew louder, then the child started shrieking.

"I could tell he was a child with special needs," says Rochel, "and that the meltdown couldn't be resolved by giving him gum or letting him cry himself to sleep—he needed help." Meanwhile, she continues, "people were craning their necks and starting to get restless. I'm a pretty shy person, more behind the scenes, but finally after 15 minutes of screaming I got up and headed over." She came upon a woman in a black robe and head scarf and a boy around 8 or 9 years old in a tunic and matching pants standing in front of his seat, tears streaming down his face.

"I just stuck out my hand—I wasn't sure what I was going to do, I know it must have seemed like a funny thing that I did," she says. But the most amazing thing happened: The boy looked up, gave her his hand and stopped crying. They ended up walking to a nearby bulkhead, where they sat down together. "First, I gave him a gentle but firm hug—I knew that had worked for other kids from Friendship Circle," says Rochel. Then I just started to rock with him, because that's how a lot of kids stim themselves to get calm."

The boy relaxed. Rochel doodled on an air sickness bag and traced her own hand, then his. Her husband brought over some markers. One of the young adults on the trip handed the boy a fidget spinner, which he liked holding to his cheek. A flight attendant gave him cookies. "People have asked me about the mom's reaction to all this," says Rochel. "I don't know! We were on the floor, and I couldn't see her. I hope she got to eat her meal!"

Over the course of the hour-plus he and Rochel were together, he also sat on her lap in her seat and watched cartoons and played with her Samsung phone, which he enjoyed turning on and off.
Finally, the boy jumped up and ran back to his mother. Rochel smiled at the mom. "My job was done," she says.

At the end of the flight, Rochel says, "the mother said, 'Thank you, I appreciate, I appreciate.'" Rochel asked about the child's name and where they were headed, then said goodbye. When her husband shared about what had happened on Facebook along with some photos, it spread fast. "While most of the passengers watched on with awe, little did they know that for Rochel, this is her life," he noted.

When stories like this make headlines, I tend to wish that they hadn't. That's because I dream of a world where lending a hand to a child with disabilities is an everyday occurrence that's not newsworthy, a world where where people get that a child acting out isn't doing so because he's misbehaving but because he's on sensory overload. Plane rides (especially delayed ones) can trigger a lot of behaviors in children with autism or sensory issues, as I well know from the plane turbulence of Max's younger years.

But another part of me is glad this story made headlines, given that there is still a fair amount of intolerance out there toward children with disabilities and, really, any child acting out in a public situation. We need actions like Rochel's to show people the way, whether or not a child having a meltdown has disabilities. "Everything we do at Friendship Circle is based on the philosophy that everyone is put into this world for a unique purpose, something only they can accomplish," she says. "And that's why everyone deserves respect, and friends."

Perhaps the friendship Rochel extended to this boy on that day will further encourage respect for children with disabilities—and understanding and empathy when they're losing it. Rochel firmly believes there was a reason she was on the flight that day, and hopes that the story's ripple effect will benefit others. As she says, "The amount one person can accomplish is limited, but when other people are inspired, it's endless."

Photo courtesy of Bentzion Groner

Friday, July 21, 2017

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

What to do if you're new here

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

Like this: How to treat children and teens with disabilities 

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

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

Wednesday, July 19, 2017

How to treat children and teens with disabilities (hint: like children and teens)

If you have a child with disabilities, you've dealt with awkwardness, misunderstanding, ignorance and even rudeness from people. It can be frustrating and upsetting. If you don't have a child with disabilities, perhaps you've felt unsure about how to treat kids with special needs, or you haven't been certain what to tell your own children. It can be frustrating and upsetting.

I asked parents what they wished people knew about talking and interacting with their children with disabilities. Here, their heartfelt wishes and requests. So now you know—and it never has to be unclear or uncomfortable again.

Treat kids and teens with disabilities like...they're kids and teens 

"I wish people wouldn't talk to our kids like babies, or expect less from them. My favorite people are the ones who talk to Ben like any kid."—Carrie

"Don't ask me what Alex did at school—ask him."—Helen

"I've noticed a group mentality that occurs. When one person is kind and engages with my daughter like she's a full-fledged human being, treating her like they'd treat any other 10-year-old, others do the same. The thing I most wish is that people would not pretend that she isn't there when she tries to engage. It's striking how many adults, as well as children (mostly adolescents), will just flat-out pretend she isn't there. I have watched my daughter ask another child her age a question, and the child will completely ignore her. Most painful to me is when my daughter then, likely based on the social skills training she's received, answers her own question with something like, 'Well, I think you liked that movie too!' Said child will continue to pretend there is not another human being present."—Pamela

"My daughter can HEAR YOU even though she is in a wheelchair and nonverbal. She had therapists from school who yelled their instructions at her."—Kristina'

"My daughter is a dwarf and people tend to treat her like a baby because of her size. She came home from a sleepover where they went swimming, and her very good friend told her she couldn't swim in the deep end because she wasn't tall enough. So she got stuck in the shallow end with the girl's preschool-age sister while all her friends swam in the deep end. She can swim the length of the pool without assistance! It's a constant struggle."—Jennifer

"Our children are people with feelings and thoughts and emotions. They are usually so perceptive and good at reading people that if you happen to be a nasty turd, our kids will whisper (or say out loud) something hysterical about you that will keep us laughing for days, months or years to come."—Julie

"My daughter does not have the cognitive ability to understand very much, and she is nonverbal. In spite of that, she still needs to be acknowledged with a smile and a 'hello.'"—Jennifer

"People act so embarrassed, like they shouldn't be looking at the kid or they don't know how to act around them. But the truth is, you don't need to know anything to say 'hi' and compliment a kid on their looks or attire, just like you would with any 5-year-old."—Megan

"I wish other kids understood that humor is universal. If you find a YouTube video cute or a joke funny, chances are so will another child regardless of ability! I mean, who doesn't love baby goats?"—Genna

Patience: still a virtue

"You need to give some children a chance to process what is being said to them or asked of them. Repeating it over and over again quickly won't make my daughter respond in a more timely, socially-appropriate fashion. Every time you ask her the question, her mind needs to reset the processing of it all over again. Give her a moment and if she really doesn't understand you, then let's break it down for her to understand what's being asked of her."—Mary

"I always tell people to count to 10 in their heads before repeating themselves."—Heather

"Eye contact and body language! My son can't talk so he's super-aware of people, and he communicates with eye contact and body language."—Courtney

"Let my child guide the conversation, rather than force him to answer all your questions. Go with his interests, even if they mean nothing to you."—Heather

"My son's not ignoring you, sometimes he doesn't answer right way. It takes a little longer to process what he wants to say."—Stacy

"My particular spectrum kid doesn't always understand verbal cues. He's a slow auditory processor. But he does respond well to written words. Sometimes, communicating longer or harder things are better through words. But this is not every kid! One size does not fit all on the spectrum."—Melissa

Spare our children the pity

"Don't feel sorry for my son. This is the only life he knows. He doesn't feel bad for having his condition."—Belinda

"My 3-year-old is not an inspiration because he woke up this morning. You don't know anything about him except that he's in a wheelchair! Explain to me how exactly he is your hero?"—Amber

"My son is completely capable of being an a-hole, just like his siblings. His disability does not make him sweet or darling!"—Courtney

Spare them the stares and comments, too. (Also: Don't pet them.)

"My daughter is still a baby so her disability is hard to detect unless you stare, which people do. Staring is hard for me, but the 'well-meaning' comments really hurt. 'What a tiny baby for 10 months!' 'She must have been a preemie!' 'Her head is so small!' Also, 'She'll grow out of this.' I'm not a pessimistic person, but I know she won't grow out of it. It's who she is, and that's okay."—Jaime

"Please stop giving my kid dirty looks because she laughs super loud. She's laughing. She's happy. Come on. Especially don't give us said dirty looks when we're at the 4 p.m. showing of an animated movie!"—Phoebe

"My son was a preemie, what I hated hearing was how 'He will catch up, don't worry.' No, he won't. He has delays and is short for 15. He will be just fine, but he won't 'catch up.'"—Angela

"Do not attempt to hug my daughter or pat her on the head. She is not a pet. Offer to shake her hand. Make eye contact."—Teresa

"Keep your damn hands to yourself. My daughter is tiny, nonverbal and uses a wheelchair. People come up and just pet her like a cocker spaniel."—Jo

Don't make assumptions

"I wish people would not assume that my son has certain traits, challenges or tendencies just because of his diagnosis. They're often wrong."—Lena

"Don't treat children with disabilities as if they are incapable of doing a multitude of things. Don't treat them as though they have zero capacity to cope with the most minor of disappointment or dissatisfaction, either."—Amber

"Not all children with disabilities are the kind you can see. My son's disability is mental, but otherwise he seems like most children. He tries so hard but he constantly feels bad because other kids make fun of him and some adults think he acts out. He's not perfect and I don't give him a pass on his behavior, but some of it is beyond his control."—Robin

"Just because my son can't keep up in some ways, don't assume he can't in other ways."—Betsy

"Just because my son is nonverbal doesn't mean he can't understand what people are saying to him or about him in front of him!"—Kristie

"Don't assume that my baby likes to be touched or caressed and likes peek-a-boo. My daughter has many sensory issues, on top of her cerebral palsy, that are invisible. Quite possibly, the most difficult comment to hear is, 'Well, she looks normal.' I'm not even sure how to take that."—Jessi

"I wish more people would think about disability like any other difference, and talk to their children about it. It's not offensive to talk about disability—it's offensive to act differently toward someone with a disability. People are always so afraid to say or do the wrong thing. Presume competence and the rest will follow."—Jen

Teach your children well 

"It's not personal. The fact that my son has difficulty looking at you doesn't mean he doesn't hear you or is uninterested. He actually loves meeting new people."—Jackie

"Don't hush your child when they ask a question about my child in a wheelchair. Answer his questions. If you don't know the answer, politely ask if your child can ask a question. This is how we eliminate the stigma and include all children in the conversation. Just because he's nonverbal doesn't mean he's not there. Interact with him. Talk to him. Learn his responses. They're subtle, but dynamic."—Amber

"Please avoid talking with your kids about our children's differences being 'better' or 'worse,' which further alienates them."—Betsy

"Teach other kids to include kids with disabilities in activities—like if they're at a party, and playing a game, ask the child if they want to play, too."—Jamelah

"It's okay to ask questions as long as they aren't judging. I hate when parents tell their child to be quiet when they ask things like 'What is on your legs?' Instead of embracing differences, they learn to be scared because the parents make it a voodoo topic. Just ask the question and learn the answer, it might be the start to a friendship!"—Rachel

Related Posts Plugin for WordPress, Blogger...