Monthly Archives: August 2018

Flyer for Lyra’s classmates

Many families make flyers to send home with the classmates of their children with Down syndrome. I’ve seen several made by friends of ours, who helped us with ours.

Rather than wondering if Lyra has Down syndrome or why one student in the classroom receives extra assistance, a flyer gets in front of the proverbial bus. Information can dispel misunderstanding and fear and encourage acceptance.

Tomorrow is Lyra’s first day of kindergarten. She will be fully included in a general ed classroom with “push-ins” (assistants come into her classroom rather than pulling her out). There is not a single study that shows improvement for students who are in segregated classrooms based upon disability.

Furthermore, not only do typical students who grow up with a classmate with an intellectual disability become normalized to diversity, they, too, also benefit academically from inclusion.

Mom, stepdad and kids work together to create a family

The wedding of our friends Michael and Jessica, celebrated 10 years ago this week, was an event that brought together more than just two people.

For weeks, people prepared the farmhouse of Jessica’s grandmother. In the backyard, the couple were wed by Michael’s father on a platform built by Jessica’s father, covered with an awning sewn by Michael’s mother. The flowers were a year in the making — chosen varieties grown in the gardens of several friends filled dozens of vases.

Jessica’s father gave the first toast, saying everything an adult child wants to hear from a parent. Unbelievably touching then, it became more poignant when he died less than two years later from an aggressive brain tumor.

And when the day gave way to a moonless night, everyone gathered around what looked like a derelict gazebo. Easily 12 feet tall and 5 feet wide, boards of all shapes and sizes created a pattern reminiscent of webs built by drugged spiders. Built by Jessica’s firebug uncle as his gift, he ignited the structure. The celebratory pyre was tremendous, if not a little scary.

Several hours after we’d arrived, my boys, Max and I all sang Strawberry Fields Forever as we walked under the starlit sky to our car, parked a few blocks down the street.

That magical day seemed a nod from the universe. For that’s when my boys first met Max.

Photo from the 2008 wedding: From left, Claude, Hugo, Jules and Holly Christensen, Max Thomas. (Photo courtesy Holly Christensen)

While we had long been friends, a year after I became newly single, Max and I discovered among all the things we shared in common was a budding crush. It was March when he first kissed me, kindling something I thought unavailable to 40-somethings.

Five months later, when Max accompanied us to the wedding, I told the boys he was an old friend. We left it at that during the following months even as Max came to our house for dinners and invited us all to movies.

“What would you think if I started dating?” I asked the boys over dinner one evening in October.

“Oh, no! No, no, no!” said 11-year-old Hugo.

“What if I told you I already am?”

“What? Who?” asked Hugo, bolting up from his seat at the table.

“I know,” said 8-year-old Jules with a sly smile. My quiet boy has always been a great observer (though not so good at remembering names). “The guy with the glasses.”

The next time Max came for dinner, Hugo walked up to him and said, “So, I hear you’re dating my mom. Can I have 20 bucks?” Max politely declined.

At the time, I was taking night courses for my master’s degree. Before long, Max began driving to my house after work to cook dinner and stay with the boys until I returned. The first night, I did not leave instructions with Max, for Claude was 14 and the boys knew the rules.

Silly me, they hoodwinked Max. When I walked in the door at 10 p.m., nobody was ready for bed, all the dishes were dirty and homework was still spread across the dining room table.

That was the first time Max saw me angry with my children.

In the following 10 years, those little boys grew into men and a lifelong bachelor became a seasoned father. In the process, we’ve learned how to accommodate our habits and personalities, sometimes changing along the way.

For instance, Max and I do dishes differently. Before putting anything in the sink of hot soapy water, I rinse off all the muck. Max tosses everything as is into the hot soapy water. The boys do dishes my way. Many times, too many they say, Max tosses a sauce-coated serving spoon or a greasy pan into their wash water. They howl, he apologizes but can’t seem to completely break the habit.

Living together also means polite pretense vanishes. If I am mad at someone, I say so, at times with more diplomacy than others. Oddly enough for an attorney, Max avoids conflict. For years, when something bothered him, he quietly, but obviously, fumed. It drove the boys crazy and they’d call me and say, “Mama, Max is doing that thing.”

Going from zero to five kids in four years, Max soon learned all emotions are valid, even the messy ones. He now tells the boys when he’s upset with them, keeping me happily out of the middle. I’ve had to work on that, too. Raising children with someone who isn’t their biological parent elicits in me what I think is an evolutionary response to protect those genetic packets called children.

I can complain about my children’s behavior, their attitudes and when they disappoint me. I might even yell in their faces (not often and, really, just Hugo). But when Max corrects the boys, my first impulse is to defend them, whether they merit a defense. Even now.

A family photo from 2015. Holly and Lyra Christensen, Claude Christensen, Leif Thomas, Max Thomas, Hugo Christensen, Jules Christensen. (Photo: Shane Wynn)

Sons of single mothers do not need a man in their lives to show them how to be successful adults. Women are adults who can do that. And I did. But my relationship with Max has modeled something invaluable — that a man can love and support a strong woman without needing to control her. And even the best relationships require work and compromise.

Like our friends Michael and Jessica, Max and I came together not as two individuals, but as two larger families. Because of their ages when they met him, each son has a different relationship with Max. Unlike his brothers, Jules has few memories of life before Max. All three frequently tell Max how glad they are to have him in their lives.

And it all started at a rollicking wedding at a farmhouse.

This was first published in the Akron Beacon Journal on Sunday, August 12, 2018.

Akron Children’s Hospital: Great for everyone, invaluable for frequent flyer

Ophthalmologist Dr. Richard Hertle, Lyra and dad Max Thomas before Lyra’s procedure on Thursday, July 26, 2018. (Photo: Holly Christensen)
They say it’s impossible to know how good your homeowner’s insurance really is until you file a claim.

The same can be said of your local hospital.

Until 2012, I had only a handful of experiences at Akron Children’s Hospital.

When he was in the second grade, Jules was tested and diagnosed with dyslexia at ACH. One of their orthopedists confirmed Hugo’s mild scoliosis and told him he had nothing to worry about. And ACH’s sports medicine department diagnosed Claude’s Osgood Schlatter disease, an inflammation of growth plates at the end of the tibia common in athletes who are growing rapidly.

Lyra, however, is an ACH frequent flyer. This month alone she has 11 appointments.

On her second day of life, we met for the one and only time with Dr. Catherine Ward-Melver, a kind geneticist who confirmed Lyra’s diagnosis of Down syndrome.

On her third day of life, we met Lyra’s ophthalmologist, Dr. Richard Hertle, whom we’ve seen multiple times a year ever since. He has operated on each of her eyes two times.

When she was 5 months old, Lyra was diagnosed with hypothyroidism, a condition common in people with DS. Certified nurse practitioner Stephanie Marszal in the endocrinology department is also someone we see regularly. Our visits with her are like double dipping, for Marszal worked in a pediatrician’s office before specializing in endocrinology. She provides both an update on Lyra’s thyroid and an extra wellness visit.

In the second half of her first year, Lyra began the infant block of therapies offered at ACH. Physical, speech and occupational therapies in back-to-back half-hour appointments make effective use of everyone’s time. Children from birth to 3 years old are eligible with a qualifying diagnosis.

Speech therapist Shelly Vaughn had Lyra singing Itsy-Bitsy Spider at our first visit, leaving me slack-jawed. Heather Reiss, her occupational therapist, got Lyra to work, work, work on both fine and gross motor skills all while Lyra thought she was playing. When she aged out of the infant block, I cried because I had grown so close to these ladies.

These days, Lyra has four speech therapy and two occupational therapy appointments per month. When we pull into the parking lot, Lyra chirps eagerly from her car seat, “Lisa, Miss Margaret!” Still, I sit in on enough sessions to know they make our girl work. Recently Margaret Norin, Lyra’s OT, told me, “I wish just once my clients with DS would say ‘Yes!’ the first time I ask them to do something!” Oh, yes, I could not agree more.

With Down syndrome comes a cascade of tests to rule out various issues. Annually we visit Dr. Diane Langkamp in the Down syndrome clinic to make sure we are on top of these things. (Down syndrome clinics are overwhelmingly located in the northeastern U.S. and I do not take for granted that we have one in Akron.)

Last year, an ACH otolaryngologist (ear, nose and throat doctor) ordered a sleep study for Lyra. Kids with DS have a higher rate of sleep apnea due to certain anatomical features. Any child not getting enough sleep has an increased risk of developmental delays, and children with DS need fewer, not more, developmental obstacles.

Most people with DS not only have low muscle tone, they frequently have ligament laxity. One common effect is foot pronation — ankles tilting toward one another while the toes splay outwards, fin-like — so Lyra has worn braces on her feet since she began walking.

But ligament laxity also affects the cervical spine. An injury to the atlantoaxial joint, or the first and second cervical vertebrae, can lead to paralysis or worse. So on July 20, Lyra had a spinal MRI under general anesthesia to examine the joint.

This past Thursday, Lyra also had an eye exam under anesthesia. Were she a more “compliant” patient, this would not be necessary. But Lyra fights like an oiled otter when getting examined up close and personal. Dr. Hertle needed to determine her first bifocal prescription and also test her for glaucoma. Because of her congenital cataracts and subsequent lensectomies, Lyra has a higher risk of glaucoma than the average bear.

Dr. Hertle. If I could put heart emojis in my column, they’d be here. When I learned my newborn needed eye surgery ASAP, I called a friend in a related field and asked who was the best in Ohio. Doctors hate talking about which practitioners are better, but as a friend of more than 30 years, this doc made some calls for me.

We’d be hard pressed to find a better pediatric ophthalmologist. Gentle and effective with Lyra (remember: oiled otter), when asked questions about the eye and his surgical techniques Dr. Hertle lights up like a boy getting his first puppy.

I learn other things from him too. When Lyra was 9 months old, she suddenly seemed to “awaken.” Dr. Hertle explained to me that the nerves in children with Down syndrome myelinate later than in typical kids: “See that wire down there,” he said pointing to an outlet with a thick cord plugged into it. “Because it’s insulated, electricity can travel faster. The same is true of nerves when myelination has occurred.”

I know of only two things lacking at ACH: One, the food could be better. Across the country, hospital restaurants serve food that is healthy, delicious and affordable. ACH has made some baby steps (two thumbs up for the cafe in the Kay Pavilion) but there is still ample room for improvement.

Also, all departments, including the ER and the surgery centers, should have more than popsicles and graham crackers (Goldfish, please).

The second deficit is big for us: No optometry. Because of her vision impairment, Lyra qualifies for a state insurance program called BCMH (Bureau for Children with Medical Handicaps). It helps with her visits to Dr. Hertle, but ideally we’d be able to use it for her glasses, too.

Lyra has no lenses, natural or artificial, in her eyes. Her glasses are essential and expensive. In order to use the BCMH insurance, however, our primary insurance must get billed first. The only optometrist’s office in the northern half of Ohio that takes both our primary insurance and Lyra’s BCMH is at Nationwide Children’s Hospital in Columbus.

But these concerns are no more than a couple of cirrostratus clouds in a bright blue sky. Not a week goes by that I don’t thank the universe that it takes me less than 15 minutes to get Lyra to some of the top medical professionals in the country.

Not only is it an immeasurable convenience for Summit County residents, ACH has no shortage of business, or so Lyra’s neurologist told me recently. Which means ACH provides great medical care where it is greatly needed.

I know parents of children with Down syndrome who have moved to different states for better medical care. That decision is one we will never have to make. If ACH were an insurance company, we’ve filed just about every possible claim. And since the results typically exceed our expectations, we know firsthand how good it really is.

This was first published in the Akron Beacon Journal on Sunday, July 29, 2018.