Blog

Questions Kids Ask: With Answers This Time

March 12, 20229 CommentsPosted in blindness, book tour, careers/jobs for people who are blind, guide dogs, Mike Knezovich, questions kids ask, technology for people who are blind, travel, visiting libraries, visiting schools, Writing for Children

When the American Society for the Prevention of Cruelty to Animals (ASPCA) selected Hanni and Beth: Safe & Sound as the winner of its Henry Bergh Children’s Book Award back in 2008, my sisters accompanied my second Seeing Eye dog Hanni and me to the American Library Association convention in Anaheim to receive the award. Stephanie Burke, the director at the library in Cliffside Park, New Jersey was in the audience along with her aunt, who teaches at an elementary school in Fairview, New Jersey. They introduced themselves to us, we hit it off right away, and before we all left the convention hall I thrust promotional postcards and flyers into their hands. “Hanni and I would love to come visit!”

Next thing you knew, we were off to New Jersey. Stephanie’s mom worked at a school in Fairview, too, so Hanni and I had not just one, not two, but three different gigs while we were there: one at Stephanie’s library, one at her aunt’s school, and one at her mom’s school.

After I’d booked my flight with Hanni to Newark, Stephanie generously offered to pick Hanni and me up there, drive us to our hotel, and chauffeur us to our library and school visits the next couple days.

Stephanie offered to take Hanni for walks when necessary, too. She even picked up afterwards when Hanni “emptied.” Now that’s a friend one never forgets!

Stephanie has kept up with our Safe & Sound blog ever since that visit (hi, Stephanie!) and wrote me directly last month to catch me up on things going on in her life. For one, she is married! Now her name is Stephanie Burke Bellucci, and their son Declan is in First Grade. “He attends the Academy of Our Lady of Grace, which you visited all those many years ago,” she wrote. “Time sure does fly!”

The day she wrote, Declan’s homework had included reading about a person and their Seeing Eye dog. “A very nice story in his school reading book,” Stephanie said, adding that she’d lent her copy of Hanni and Beth: Safe & Sound to Declan’s teacher, who read it out loud to the class the next day.

“I was wondering if there’s a way we could arrange a quick visit with you and the students in Declan’s class and the other First Grade class,” she wrote, commenting on how, thanks to the pandemic, Declan’s classroom is pretty high-tech now. “So you could join with a simple Zoom login and be projected on the white board,” she said. “Let me know if this is something we can coordinate.”

Of course I said yes. I mean, c’mon! Compared to all the things Stephanie had done for Hanni and me (see above, about picking up) during our in-person visit to New Jersey all those years ago, Zooming in with her son’s first grade classroom would be a breeze.

And it was.

What fun to hear questions from first-graders, so different from the questions I’ve been getting during visits to third-grade classrooms the past couple years. Some examples:

    • How do you make your books?
    • Who was your first guide dog?
    • What is your favorite book that you wrote?
    • How do you drive?
    • When did you start to be blind?
    • How can you draw the pictures for the books?
    • What ages were you when you went to the school when you were blind?
    • How did you know how to cook food and to pour water and to write the book if you were blind?
    • How do you go shopping?
    • Did you ever have a second guide dog?
    • How do you clean your house?

Pretty sure my answer to that last question was, “Not very well.” Or maybe I said, “Just ask Mike.”

For the first time ever, you can find out for yourself how I answered that (and all the other questions the first graders asked). How, you ask? Super-Stephanie saw to it that the Zoom event would be recorded, she sent it my way, my friend Sharon Kramer had it transcribed in to words, and my husband Mike Knezovich created a YouTube you can link to here or watch it below.

You know what they say: it takes a village. A big thank you to Sharon and Mike here in Chicago, and to Stephanie Burke Bellucci and the teachers and first graders at the Academy of Our Lady of Grace in New Jersey for helping make this all happen. You’re the greatest!

Questions Kids Ask: Do You Ever Go Anywhere by Yourself?

April 1, 202116 CommentsPosted in blindness, Braille, parenting a child with special needs, questions kids ask, Seeing Eye dogs, technology for people who are blind, visiting schools

The photo above on the right is one of then-new Seeing Eye dog Luna’s first and last in-person school visits in early March, 2020–before you-know-what happened. And now…we’re back!

Well, sort of.

Black Lab Luna and I made four school visits this past month and will be doing more in April — all of them via Zoom. So now, rather than getting dressed up and packing a backpack with dog bowl, Braille book, white cane, talking clocks and other cool blind stuff and then heading outside where my fabulous friend Jamie Ceaser picks me up at the break of dawn to drive me an hour to the suburban schools we visit, I just brush my teeth and hair, put a nice sweater on, sit on the floor in my office, call Luna to sit at my side, have Mike arrange my laptop on a footstool to aim it so the kids see both Luna and me in our little Zoom square, and… abracadabra! We are live on screen in the bedrooms of third-graders learning from home during COVID.

These Zoom classes exist thanks to Patty O’Machel. A special needs advocate and the mother of a teenager who has cerebral palsy, Patty launched her business Educating Outside the Lines in 2018 to encourage other schools to use the disability awareness curriculum she developed years ago for her daughter’s elementary school.

Many Chicago suburban school districts added the program to their curriculum, and for a few years now I’ve participated in person as one of the people children meet who use “helping tools” to get things done. During disability week, children at participating schools get to experience prosthetic legs, wheelchairs, sign language, Braille, talking iPhones, Seeing Eye dogs and white canes hands-on.

But there’s the rub: after March of last year, “hands-on” was no longer allowed.

So Patty went to work, developed an online alternative, met with the schools to talk about how online visits could work, and we’re giving it a go. Our visits are only 30 minutes long, Patty introduces Luna and me to the kids, the teacher askes them to “mute themselves” while I give a short talk, then the kids either use chat to send their questions to Patty to read out loud, or they “unmute themselves” when they’re called on.

I far prefer them unmuting themselves to ask. Without being able to see their tiny faces on screen, I rely on the enthusiasm in their voices to assure me my words are connecting with these very bright eight- and nine-year-olds.

So many of you Safe & Sound blog readers have told me you’re sorry all my school visits were cancelled this past year, how much you’ve missed hearing questions kids ask. So here we go with a sampling from the Braeside Elementary third-graders Luna and I met virtually this past Monday morning:

  • How do you get into a car?
  • Do you remember what things looked like when you were a little kid and could still see?
  • So after you get in the car, how do you drive, I mean, like, there are all those buttons so how can you tell those buttons and how can you know which one to push?
  • So if a friend comes to pick you up, how do you know if they’re there and it’s the right car?
  • Before COVID, did you feel people’s faces to see what they looked like?
  • Did you have to learn a lot of new things after you were blind?
  • I hope you don’t mind me asking, but how old were you went you got blind?
  • How does your dog know what your destination is? (And yes, the kid really did use the word “destination.”)
  • How long did it take you to learn Braille?
  • Do you ever go anywhere by yourself, or is your dog always with you?
  • When you used to use a white cane, did you prefer using one with a ball at the end of it? (And yes, the kid really did use the word “prefer.”)
  • I know what you mean about that Braille thing, I read a book about Helen Keller and it had a chart of all the Braille letters and it looked like it would be very difficult (okay, not a question, but I appreciated his empathy and his use of the word “difficult” there).
  • Do you ever make mistakes? Like, you said you have Milk in a carton in your refrigerator but you have juice in cans, Did you ever pour a glass of juice and it ended up being milk instead?
  • How many years have you been blind?
  • What if you use your phone to call someone and you don’t have the number right?
  • How do you know the clothes you’re wearing?
  • How does it make you feel when you make a mistake?

Make no mistake here: I was wrong to doubt whether Zoom could work for these school visits. Zoom is not the same as a real visit (the kids can’t line up after I take Luna’s harness off at the end to pet her) but I feel like the kids and I do connect in some ways. At the very least it gives those hard-working teachers doing this all from home a well- deserved 30-minute break!

Mondays with Mike: I Saw the Light

March 1, 202110 CommentsPosted in Mike Knezovich, Mondays with Mike, parenting a child with special needs, Uncategorized

On Friday I opened an email from Bethesda Lutheran Communities, the operator of the group home where our son Gus lives in Watertown, Wisconsin. The gist of the message was that Bethesda had agreed in principle to sell its Watertown services to another organization, Broadstep. For those who don’t know what the heck I’m talking about, Bethesda announced last year that it would be closing its residential operations in Wisconsin, at least partly due to the financial burdens COVID has caused.

Gus has been cared for by Bethesda since 2002, so it was a shock to our system, to say the least. A case worker has been trying to find a new placement for Gus, and in fact, we turned down an opening at a home in Racine based on the hope that Bethesda would find an organization that would take over Gus’ house. That would be ideal—he wouldn’t have to move, and current staff could even be retained.

The tour continues!

It was a tough call. Beth leaned toward taking the spot—if we held out and the sale never occurred, Gus would still have to move and we might not have much say later on. Plus, Racine is considerably closer to our home in Chicago.

The flip side: Gus has caseworkers, staff, and doctors who know him. (Finding doctors and dentists who are willing to treat developmentally disabled people like Gus is not all that easy.) And, you know, it was simply a case of the known vs. the unknown.

We held out. And it looks like it’s going to work out. I almost broke down and cried while I was reading the email. I didn’t think I was walking around and thinking about it consciously. But it was apparently weighing on me more than I realized. What a relief.

So, Friday was already a great day. But wait, there’s more!

Beth and I had a date night. Sort of. We’re both very big fans of Todd Rundgren. In my mind, he’s up there with the likes of Stevie Wonder, Ella Fitzgerald, Prince—you know, transcendent talents. When I was in high school I wore out the grooves on Rundren’s “Something Anything,” a double album (plus an EP) that was all about…teenage angst. He wrote everything, played all instruments and produced the album. He’s always been innovative, and has produced a bunch of successful albums by other artists.

As we cultists say, “Todd is God.”

This is a terrific review of the “Pittsburgh show.”

Well, he’s doing a “tour.” It’s goofy, but if you play along, as we did, it’s a lot of dumb fun. He and his band actually perform every show of the tour live in Chicago. But, each night the stage and backdrop changes themes by city, and he peppers in the appropriate “Hello Cleveland” remarks. Even the clock display is set to local time.

We signed up for the Chicago date. Beth decided we should go out for a drink in advance, as is our wont in normal times. She got dressed up and even wore…lipstick. Me, I was my dumpy self. We went to our local, Half Sour, which can now have indoor dining at reduced capacity. When asked what we were doing that night, we said, “We’re going to a concert!”

When we got home I hooked up my MacBook to our TV, and I blue toothed it to our stereo. Which is a fine piece of HiFi, by the way. (My nerd self soldered the amp together from a kit. It has tubes and everything.)

We connected to the stream at around 7:30, in advance of 8:00 start time, and it was weirdly kind of real. Stage hands were running back and forth hooking stuff up. Behind the stage, we got the images of the Chicago skyline, the lake, etc. There was a familiar pre-concert anticipatory murmur—because 19 people are allowed to attend in person each “date.” It’s pretty tightly controlled—attendees must present evidence of a negative COVID test within 72 hours of the concert. People were comfortably spaced, and between attendees were video screens, each displaying the faces of virtual attendees who’d bought VIP passes.

The footlights were dimmed, the fans roared as much as 19 people can roar, and the band came out—a horn section, three sequined backup singers—in all 11 counting Rundgren. The sound was marvelous from the first note.

We rarely order delivery food, but for this occasion we had Chinese delivered. It came about five minutes into the performance. While I was downstairs in the lobby picking it up, Beth said she started to cry when she heard the horn section, realizing how much she’s missed live music.

We applauded. We hooted. We jumped up and danced. The video production was superb—it came off as slickly as a fully edited and produced documentary concert film.

At the end of the two-hour performance (the guy is 72, and Mick Jagger has nothing on him) we even did the thing you do after a music or theatrical performance—you talk about it. We called our friend Nancy, whom we knew had also “attended.” On speaker phone we marveled at the arrangements, the sound, and, well, it was joyous.

It wasn’t quite the real deal. But thanks to Rundgren’s imaginative, innovative artistry, it was pretty damn close.

Can’t wait for the real thing.

Mondays with Mike: On the last day of 2020, a prescription for the soul

January 4, 202121 CommentsPosted in Mike Knezovich, Mondays with Mike

I had the week after Christmas off,  and I took advantage of it by spending a few nights at Starved Rock State Park. I needed some nature time outside the city, and Beth needed me to have nature time outside our condo.

We’re together a lot in these times.

As I finished packing on the day of my departure, I ran through my myriad pills and discovered I’d run out of one of my prescriptions while I was away. I booked a refill and picked it up around noon.

Would you like a bag?” the pharmacist asked. I said no, and stuffed the prescription into my right jacket pocket.

On the way back I stopped at the market for something that Beth needed, and I stuffed it in the other jacket pocket.

I got home, gave Beth her stuff, picked up my rental car, threw my bags in the car, and I was off. About an hour out, I visualized the two books I wanted to bring with me…sitting on the ottoman at home. Which is where they still are.

About the same time, my phone lit up—I didn’t recognize the number, and besides, I was driving, so I didn’t pick up. When I stopped for a break, I checked my voicemail. I hit the play button and heard a gravelly voice and dialect reminiscent of Louis Armstrong. Between the audio limitations of his cell phone and my cell phone, it was difficult to understand what he said, but I heard the word “prescriptions.”

I figured it was a wrong number until I checked into the lodge and unpacked. I reached into my pocket to put my new prescriptions into my toiletries bag and…no prescriptions. Uh oh. Finally the light bulb went off: Lloyd, who’d left the message, had found my prescriptions. I hoped, anyway.

I called back, but the voicemail said leave a message for a woman named Pat. I went ahead and left a message, and within minutes I got a call back. It was Lloyd again, and this time we could hear each other better. He had indeed found my prescriptions and he wanted to know how to get it back to me.

I learned two things: My jacket pockets aren’t deep enough to hold anything much more than a glove. And, for better or worse, every prescription has my phone number and home address. And a stranger now had both.

One thing to know about our Walgreens: It’s at a hub of the elevated Orange and Green Lines, and to the Red Line subway. It’s also a major bus hub. And so, an assortment of what my parents used to call “characters” congregate on Roosevelt. It’s never threatening, but I’ve taken to calling it the Star Wars Cantina. It’s a bit of a gauntlet to walk through with guys selling loose cigarettes and panhandlers.

And  I’m thinking, Lloyd’s one of those characters. And I got worried until…I realized that this man could’ve thrown my prescriptions in the trash. But he took the trouble to call me on his grandmother’s phone. And I felt a little remorse for thinking, even for a moment, the worst.

I thought about asking Lloyd to bring the prescriptions back to the store, but really, I wanted to thank him personally. So, we greed to meet Thursday, the day I returned, at the Walgreens entrance.

That morning I called to confirm that we’d meet at 1 pm. “I’m taking the train,” Lloyd said. “I’ll call you when I come up the steps from the Red Line.”

I went early to grab another scrip at the drugstore—this time I said yes to the bag.  I hung out outside, watching street life. I eyeballed the Red Line stairs and eventually a heavy-set guy with a phone in his hand emerged from underground.

My phone rang and I waved to him without picking up the call.

He walked toward me with a slight limp. As he approached, he said, “Mike?”

“Yeah, Lloyd?”

We broke the rules and shook hands.

I thanked him profusely—and it was sincere. For one, I needed the pills—I was out. For another, it was a three-month supply. So, if I circled back and the insurance wouldn’t pay, I’d be out a fair amount of cash. And finally, the guy went out of his way for me.

He handed me my prescriptions, which I immediately put into the bag I’d gotten from my latest pickup.

And I handed him an envelope to thank him for his time and effort, something he’d not asked for.

And that was that. We said goodbyes and exchanged Happy New Years. I walked north, and he walked around the corner, headed to the Star Wars Cantina on Roosevelt.

Mondays with Mike: Stuff

November 30, 20204 CommentsPosted in Mike Knezovich, Mondays with Mike, politics, Uncategorized

Hope you had a great holiday—we sure did. I made turkey, stuffing, mashed taters, and brussels sprouts (with pancetta) for me and Beth.  And then I had to figure out what to do with all the leftovers. Small turkeys were in short supply so I ended up with a big one. But thankfully, some neighbors agreed to help us out and take some of it. We delivered it during a bundled up and blanketed, masked, distanced gathering of our neighborhood friends at our little park. We opened festivities with a bubbly toast to our friend who recently finished a course of chemotherapy, and then a group toast to one another. It was about as thankful a Thanksgiving.

The one, the only, Randy Newman.

Other than that, I pretty much have nothing, but I have come across some interesting reads.

Here’s one that’s in the LA Review of Books (no, it’s not a book review) about one of my favorite artists on the occasion of his birthday: Randy Newman. Titled Adrift in Cosmic Quarantine: Randy Newman Turns 77, it’s a very well researched and written piece—there’s a ton of stuff I never knew. I mean I knew he wrote things like “Mama Told Me Not to Come,” made famous in 1970 by Three Dog Night. I didn’t get started with Randy Newman until Sail Away and have most of everything he’s done since. But he was at it for years before that. From the article:

His first charting record came via Vic Dana, who sang “I Wanna Be There” in 1961, the singer complaining bitterly about not getting invited to his ex-girlfriend’s wedding. Then the Fleetwoods picked up “They Tell Me It’s Summer,” with its command of pop’s evanescence, and soon top-shelf singers were grabbing on to Newman’s sturdy material: Erma Franklin, with “Love Is Blind” (1963); the Walker Brothers, with “I Don’t Want to Hear It Anymore”(1964); Jackie DeShannon, with “She Don’t Understand Him Like I Do” (1964). Some songs, like “Nobody Needs Your Love More Than I Do” (1965), featured a sure pop strut that elevated Gene Pitney’s reedy, pinched delivery. Newman’s material crossed deftly from pop into soul, with “Big Brother” by The Persuasions (1965), “Love Is Blind” by Lou Rawls (1964), “Friday Night” by the O’Jays (1966), and especially Jerry Butler’s “I Don’t Want to Hear Anymore”(1964). He even placed a song with his guru, Fats Domino, who sang “Honest Papas Love Their Mamas Better” in 1968.

Anyway, great article, with lots of pop music history—give it a read.

And this isn’t a read but it’s eye-opening. (Hat tip to our friend Kyle for sharing it.) It’s a Centers for Disease Control map and ranking of states by the number of gun deaths per 100,000. I’ll submit without comment.

Firearm Mortality by State

Our health care friends (a doc and physician assistant) are better after COVID bouts. Better enough to make it through workdays, but by their accounts, just barely. The devilish fatigue that is often leftover makes it hard to get through each day.

And this doesn’t help. It’s an account by an ICU nurse that speaks for itself. Folks, if you hate liberals, or you hate government guidance, don’t hate your fellow Americans who are literally being driven into exhaustion and some out of the profession—health care workers.

To end on a happier note, Beth surprised me with a gift this past weekend: Richard Ford’s latest collection of short stories. It’s titled Sorry for Your Trouble. I didn’t even know he had a new collection out. So now I have a set of little gems to look forward to, some based in New Orleans.

And I’m already dreaming of our next trip to New Orleans, whenever it’s safe.