The time has come to legislate gluten-free food

"I'm gluten free…"

That's how my 15-year-old starts his order at every restaurant. He has Celiac disease and gets very ill anytime he eats gluten.

For the uninformed, Celiac disease is a genetic autoimmune condition that affects the gastrointestinal tract when gluten — a protein found in wheat, barley, and rye — is ingested. When someone with Celiac disease eats gluten, the lining of the small intestine is damaged. In Donovan's case he gets serious gastrointestinal symptoms, sometimes for days.

Thus, Donovan is very particular in what he eats and how he orders, as was the case last week at the Fargo Bar & Grill, a dinnertime stop we made while visiting family on the Finger Lakes last weekend.

Celebrating the important stuff

Donovan was diagnosed with Noonan Syndrome when he was just five months old. His gastroenterologist heard a heart murmur, which caused her to refer us to a cardiologist. She diagnosed his pulmonary valve stenosis. Since 60 percent of people with this heart defect also have Noonan Syndrome, the cardiologist referred us to a geneticist, who made the ultimate genetic diagnosis. 

Noonan Syndrome is a genetic disorder caused by one of several mutations. Our son's mutation is of the PTPN11 gene. NS is a multi-system disorder with an estimated prevalence of 1 in 1,000 – 2,500 births. In Donovan's case, he has a bleeding (platelet function) disorder, the above mentioned congenital heart defect (which doctors addressed a couple of years ago via a balloon angioplasty), feeding and gastrointestinal issues (Celiac disease), ptosis of his right eye, low-set ears, waning small stature (for which he takes daily injections of growth hormones, that are working really, really well), and ADHD. Some (although not our son) also have learning disabilities.

Donovan's diagnosis was a gut punch for my wife and me; we had no idea what life would hold for him.

This was Donovan last Friday, holding his 6th Grade Core Value Award for Scholarship.

“Incredibles 2” is an incredible movie about working parenthood

Being a working parent is all about sacrifice. Not always being there for the small stuff. It might mean missing your daughter’s first date. Or not helping your son figure out his math homework. Or not experiencing your baby’s first word (or exhibition of superpowers).

For Elastagirl (aka Mrs. Incredible, aka Helen Parr) it means all of these things.

WIRTW #468 (the “big in Japan” edition)

True story. While trekking between San Francisco’s Coit Tower and Lombard Street, we passed a group of Japanese tourists exiting their bus. One of girls, wearing a striped shirt sort of similar to Norah’s striped dress, asked if she could take a selfie with Norah. A little Puzzled and very curious, my wife asked, “Is it because you’re both wearing stripes?” “No,” she replied, “It’s because she’s so pretty.”

Somewhere in Japan, Norah has a fan club of a half-dozen girls, all with Norah selfies on their phones.

While I’m on the subject of Miss Norah, she has some pretty cool gigs coming up over the next two weeks.

• On August 3, her band, the Major Minors, plays The Grog Shop, opening for the national School of Rock AllStars. They hit at 7 pm, and tickets are only $10, available here.
• On August 5, the Major Minors again invade Whiskey Island, with music from 2 – 6 pm, and this show is free.
• Finally, on July 30, SoR Stronsgville holds its annual Parking Lot Show, previewing its summer shows, to include Donovan’s Beatles show and Norah’s punk show. Free music and not-free food trucks start at 1 pm.

Here’s what I read this week:

This is what the interactive process is supposed to look like

Last week, Donovan turned 9. Since we were in California during his birthday, we’ve had a bit of a delayed celebration back home. Since D-man has Celiac Disease and cannot eat anything with any gluten, he wanted an ice cream birthday cake. For him, however, ice cream can be tricky. Even if the ice cream itself contains zero gluten in its ingredients, it can still make him ill if it becomes cross-contaminated.

What I learned on my summer vacation

Saturday evening my family and I returned from our two-week California vacation. Five nights in Los Angeles, two in Paso Robles (if you ever pass through, I cannot more highly recommend Sculpterra Winery and the Paso Robles Inn), three in Palo Alto (where Donovan participated in a research study seeking a link between Noonan Syndrome and ADHD, and which resulted in both of my kids now wanting to attend Stanford … best of luck to them and me), and three in San Francisco. We had epic adventures, experienced Disney (of course), hiked and biked, enjoyed beautiful scenery, reunited with family and friends, and walked … a lot (72 miles to be precise).

We also learned one valuable HR lesson.

WIRTW #467 (the “here we are now, entertain us” edition)

Last Saturday, Norah’s band, the Major Minors, played to a packed courtyard outside the legendary Grog Shop. And boy did the crowd have a good time. Especially this woman.

This woman was everything today. The Major Minors absolutely slayed their gig - so many happy people enjoying their music @schoolofrockcle #sorcle

A post shared by Jon Hyman (@jonhyman) on Jun 24, 2017 at 1:00pm PDT

The Major Minors return to the scene on August 3rd, where they’ll play inside the Grog Shop, opening for the School of Rock Allstars (the school’s national touring band).

---

The blog is going on hiatus for two weeks. I’ll be back on July 17 after a much deserved vacation.

---

Here’s what I read this week.

WIRTW #464 (the “school’s out…” edition)

One of the elements of my kids’ school that I like most is that the curriculum provides many opportunities for public speaking at every grade level. Each of mine had their separate chance to exhibit their comfort in front of crowd during the last week of school.

WIRTW #463 (the “so special” edition)

This weekend is a big one for Norah. Today, she graduates from 5th grade and walks across the quad to become a middle schooler. And tomorrow, she turns 11. I think she’s more excited than usual about this birthday, because 10 was not her favorite year. Let’s just say that she and preteen girl-drama have not mixed well, and some have gone out of their way to make her feel less than special. (and, yes, I realize that the drama is only going to get worse).

Which is why I legit teared up this past weekend when she sang, “Brass in Pocket” by The Pretenders.

WIRTW #462 (the “those were the days” edition)

I write a lot about music (particularly for a legal blog), which means that if you are any sort of regular reader, you read a lot about music. What can I say? You write what you know. I we do a lot of music in my house. Between my two kids we have three bands, three weekly lessons, three rehearsals, and gigs, gigs, and more gigs (including three this weekend).

Much of my writing about music is about my favorite band, Old 97’s. And, I don’t apologize for it. Yes, I love their music, and their songs, and how damn good they are live. But I also love who they are, as noted by this clip from their Cleveland show last week.


Who else gets a shout-out from the stage in the middle of a concert? Norah, that’s who. I can only assume she’s learning and will pay it all back when she’s famous some day.

(Bonus, check out Nicole Atkins, who we knew very little about before last week, and she converted us all to huge fans with one 40-minute opening set).

Here’s what I read this week:

WIRTW #461 (the “Nörha’s School of Music” edition)

I love my kids’ school. Each year, the 5th grade math class ends with what is known as the “Million Dollar Project.” Each student is given a hypothetical million dollars to open the business of their choice. The students must research what is needed to open the chosen business and the associated costs, and then draft a budget to spend the million. Naturally, Norah chose a rock music school.

In addition to the research and the budget, each student must present their business to the class. Norah chose to present hers via a commercial, which I am proud to say she filmed, directed, and edited all on her own (with only minimal help from Dad on the ins and outs of how to actually use iMovie).

Enjoy.

Here’s what I read this week:

Swapping DNA for lower insurance costs is one wellness step too far

It is no secret that health care costs for employers and their employees are out of control. Many employers have attempted to hold down these rising costs by offering wellness-program incentives. The EEOC has signed off on these programs as legal as long as employee participation remains voluntary, which the agency defines as financial incentives for employee participation at or below 30 percent of the cost of coverage. Thus, employees have a choice—participate in the wellness program, or pay a surcharge of up to 30 percent.

One area that has remained off limits for employers under these wellness programs, however, has been genetic testing and other personal and family medical histories. A new bill moving through the House of Representatives, however, aims to change that.

Inclement weather policies should prioritize safety over productivity

Snow day! Norah went to bed with PJs on backwards last night (and received her wish; now please use your time wisely to work on homework). Donovan is going to be pissed because tonight’s Mathmagic night at school (which he was really looking forward to) will be cancelled. And me? I’m enjoying some flexibility by working from the comfort of my kitchen island. If the storm forecast holds as predicted, however, I'll be giving myself lots of extra travel time tomorrow morning for a court appearance. #lawyerlife

What about your business?

I birthed a rock star

On Friday, Rhett Miller, lead singer of my favorite band, the Old 97’s, and undoubtedly one of the good guys, held a Reddit AMA. I asked him what he knows now that he wishes he knew when he started in the music business over 25 years ago. His answer included this gem:

The important thing is that THE WORLD NEEDS MUSIC. And there will always be folks (like your sweet daughter) who will make that music!

Saturday night, my sweet daughter made that music, and then some.

Norah (age 10)

WIRTW #450 (the “Kurt” edition)

Earlier this week, Kurt Cobain would have turned 50 years old. Uncoincidentally, also earlier this week Norah stepped in for an absent bandmate to sing lead on the song that made Kurt Cobain and Nirvana a household name, “Smells Like Teen Spirit”. I think Kurt would have approved.

And some video - Smells Like Teen Spirit. Love the energy and how much fun the kids are having on stage.

A post shared by Jon Hyman (@jonhyman) on Feb 20, 2017 at 4:01am PST

This Saturday night, I’ll be at the Rock & Roll Hall of Fame, watching this band kill it in front of thousands as part of the High School Rock Off Final Exam. They are scheduled to hit at 9:25. Tickets are only $12, and include admission to the Rock Hall. It a great night watching the best the area’s school-aged musicians.

Here’s what I read this week.

Valentine’s Day at work

I am a Valentine’s Day scrooge. Yet, for someone who goes out of his way to avoid this forced and commercialized celebration of love, I’ve sure written about it a lot over the years. So, for today’s post, let’s take a jaunt back through the February 14(ish) archives, to examine the intersection of V-Day and the workplace.

WIRTW #445 (the “dynamic duo” edition)

Last weekend was School of Rock weekend for the Hyman family. My kids showed a packed club what they’ve been working on for the past four months.

Norah never disappoints when she performs (or in life, for that matter). Some 10 year old girls play sports, some dance, some cheer ... mine just kicks ass.

Witness the power of a three-song selection from her Power Trios show, about which I heard whispers was one the best shows any of the three Cleveland-area Schools of Rock has ever done.


Not to be outdone, Donovan made his singing debut a few hours prior. I give the kid a ton of credit. He had a nervous meltdown before leaving the house that afternoon. With a lot help from Mom (and a little from Dad), he composed himself, stood up in front hundreds of strangers, and sang his heart out (complete with dance moves) on The Beatles’ I Saw Her Standing There.


The encore performance is this Sunday (Jan. 22) at Brothers Lounge. Donovan should take the stage around 4 p.m., with Norah to follow at 5:30.

Here’s what I read this week:

WIRTW #443 (the “gigs” edition)

Holy cow, has it really been three weeks since I last posted a weekly roundup? It’s also early January, which means it’s School of Rock show season for my kiddos, and there are a whole bunch upcoming:

• Norah grabs the mike as part of the Power Trios show, on Jan. 14 at 7 pm at 42 Eighty Food & Drink, and again on Jan. 22 at 5:30 pm at Brothers Lounge.
• Donovan tickles the keys and makes his lead vocal debut, on Jan. 14 and Jan. 22, both at 3 pm at the same venues.
• Norah’s Junior Headliners band, now known as the Major Minors, plays the finals of the High School Rock Off from the stage at the Rock and Roll Hall of Fame, Feb. 25, with a warm-up gig at Coda on Jan. 15 at 3 pm.

As always, if stop and say hello and mention the blog, your next beverage is on me.

Here’s what I read the past three weeks:

WIRTW #436 (the "Purdy good music" edition)

Norah and Rhett

Joe Purdy has been around for awhile. That I’d never heard of him before I bought my ticket to see him play with Rhett Miller last Saturday night is my fault, not his. The fact is that I should have heard of this thoughtful, folksy singer-songwriter, given that he contributed a song to one of my all-time favorite television shows, Lost.

So with no knowledge or preconceived expectations, we settled into our front-row seats at The Kent Stage to see Joe Purdy, and we were blown away. His positive message, clever lyrics, and dry wit completely entertained us.

“An example,” you ask? Here’s Joe performing an unrecorded track about his 4th grade girlfriend, Laura Wilson. If you listen closely at 1:37, you’ll hear me drop my iPhone, followed by an embarrassed, “Dad...!” from Norah, and Joe stopping the song to chat to us, amused by the whole interaction.


Check out Joe Purdy if he comes through your town. You won’t be disappointed.

Here’s what I read this week:

WIRTW #435 (the "spare time" edition)

How do you spend your down time? What do you do when you’re not working? Me? I blog, and I play roadie for Norah and Donovan. If you happen to work as an animator at Pixar, you craft emotionally compelling and visually stunning short animated films. Like this one.


Borrowed Time from Borrowed Time on Vimeo.

According to one of its two creators, Lou Hamou-Lhadj (the other is Andrew Coats), their “goal was as to make something that kind of contested the notion of animation being a genre, and one for children specifically. We really wanted to make something that was a little bit more adult in the thematic choices, and show that animation could be a medium to tell any sort of story.”

I’d say they hit it out of the park. 

Here’s what I read this week.