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.

Nope.

Going to high school?

Nope.

Firefighters?

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.

Oh.

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.


Related Posts Plugin for WordPress, Blogger...