Category: Parenting & Family

Down syndrome · Lyra's Latests · Parenting & Family

Vision Center without optical care loses sight of patient needs (Part 2)

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I recently wrote about the Vision Center at Akron Children’s Hospital and pointed out that, no matter how excellent the Vision Center’s eye surgeons and optometrists are, the center abandons their patients in the last mile of care. 

Glasses designed for the general population rarely fit patients with atypical facial anatomy. Compared to typical children, my daughter Lyra’s facial features are clustered closer together, the bridge of her nose is extremely flat and her ears are closer to her eyes. All of which is common in people with Down syndrome, which she has. 

Frames exist for a variety of different facial structures, but few eye doctors carry those lines. That’s because, unlike the patient population at the Vision Center, most eye doctors have few patients who need specialized frames.

Akron Children’s Hospital takes all insurance, but most community eye doctors do not. Lyra’s primary insurance is Medicaid. Her secondary insurance, Children with Medical Handicaps (CMH), is provided by the state of Ohio but only for specific diagnoses. Lyra’s CMH covers her vision care, but because so few providers are approved by the state to accept CMH, and with no optical services at Akron Children’s, we’ve never been able to use it for glasses. (Ohio’s government does not consider Down syndrome a medical handicap and, therefore, care related to DS is not covered by CMH.) 

Lyra began wearing glasses at age 3 when it became too difficult to change her contact lenses. Her first frames were by a company that no longer exists, Miraflex. They were designed for the small nose bridges of babies and young children, making them ideal for young children with DS.

We purchased them at Adolph Optical, a family-owned Akron business. Adolph Optical is a good option for many and they participate in programs that help un- and under-insured patients. They do not, however, take Lyra’s insurance, and her glasses are incredibly expensive. Her prescription is +22 diopters, which means her lenses are too thick for cheaper, but heavier, glass lenses. The thick lenses bulge out of the frames, making it easy for them to get scratched. The best anti-scratch coating is also the costliest. Finally, as most of us over the age of 45 well know, multifocal lenses cost much more than single-focus lenses. Lyra’s specialized bifocals typically take between six weeks and three months to make and cost over $500.

The Eye Site in Copley is the only local optometry practice I have found that takes Lyra’s Medicaid plan, Buckeye Community Health. Buckeye contributes a maximum of $130 per year for glasses. As a small provider, Eye Site has not been able to obtain state approval to accept CMH.

After months of searching, I found an optometry practice in Alliance that takes CMH and drove there with Lyra and her prescription to pick out frames. But when I arrived, I learned that the practice does not take Medicaid. A patient’s primary insurance must first be billed by the same provider before CMH will accept a claim. 

After Lyra outgrew her Miraflex frames, I ordered a pair of frames online and took them to the Eye Site for lenses. But because her lenses are so heavy, they frequently popped out of the plastic frames, and one eventually broke. An optician who regularly works with high prescriptions would have steered me toward wire frames.

Wire frames usually have a screw holding the lenses tightly in place and nose pads that help accommodate tiny nose bridges — though Lyra’s glasses still slide halfway down her nose. I keep a jar of replacement nose pads because they frequently fall off and the spikes they are attached to cut into Lyra’s face.

I also have a jar of silicon sleeves for her frames’ temples. As the temples of most frames are too long for Lyra, I snip the ends with wire cutters and re-bend them to fit around her ears. The flat end of the temples, designed for comfort, are lost in the shortening process. The silicon sleeves help minimize pressure and protect her skin from the cut ends.

In response to my prior column, an ACH employee who works with the Vision Center’s patients sent an email that underscores ACH’s disconnect between excellent medical care and the functional application of treatment: “I have a difficult time understanding why you would not continue to make appointments with the remaining pediatric ophthalmologists at Akron Children’s Hospital and possibly travel elsewhere for optical services.”

They make it sound so simple.

Think of the families less fortunate than I with children who need specialized glasses. A single mom who may have to take off work and use public transportation to get to ACH. Once her child’s eyes have had excellent medical care at the Vision Center, she then has to figure out where to go to get glasses. What are the chances she’ll get them soon, if at all?

The practice nearest to ACH that offers optical services and accepts both Medicaid and CMH also has ophthalmologists who are just as excellent as those at ACH. That would be UH Rainbow Babies and Children’s in Cleveland.

We are fortunate to have a superb children’s hospital in Akron. But why would I get my daughter’s prescription at one hospital only to take it to another hospital for fulfillment when I can do everything in one location? Sadly, that one location is not Akron Children’s.

This was first published in the Akron Beacon Journal on Sunday, April 28, 2024.

Down syndrome · Lyra's Latests · Parenting & Family · Uncategorized

Akron Children’s Hospital needs the vision to add optical care (Part 1)

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Rainbow Babies and Children’s Hospital has it. Nationwide Children’s Hospital has it. Even Dayton Children’s Hospital has it. Akron Children’s Hospital, however, does not. What is lacking? An optical department in its Vision Center.

During my pregnancy with my now 11-year-old daughter, Lyra, non-invasive testing revealed nothing unusual. With eyes scrunched shut, Lyra cried loudly at the moment of her birth. I took her in my arms and when she opened her eyes, I saw what the testing had not. “Her eyes look Downsy and her pupils are milky white,” I said.

Dr. Richard Hertle with Holly Christensen's daughter, Lyra, who’s wearing Miraflex frames, in 2018 before she had a procedure under general anesthesia at Akron Children's Hospital.
Dr. Richard Hertle and Lyra, who is wearing Miraflex frames, before an exam under general anesthesia at ACH in 2018.

The first weeks of Lyra’s life were a medical whirlwind. Children’s Hospital’s Genetic Center confirmed that Lyra has trisomy-21, the most common form of Down syndrome. That same week, Dr. Richard Hertle, an ophthalmologist at Akron Children’s Vision Center, diagnosed Lyra’s bilateral cataracts. Her lenses were surgically removed one at a time at ages six and seven weeks. Until Lyra’s diagnosis, I was unaware cataracts could occur congenitally. In the typical population, only one third of 1% of babies are born with cataracts. In the Down syndrome population it is 3%, also a small number.

Unlike cataract surgery for adults, synthetic intraocular lenses (IOLs) are not implanted just after a baby’s lensectomies. Eyeballs grow until age 20, with rapid growth occurring both immediately after birth and again at puberty. Furthermore, studies show that IOLs implanted before the age of 5 significantly increase a child’s chances of glaucoma.

I quickly came to trust Dr. Hertle. When asked details about the surgeries and eye anatomy, he became as animated as a kid at his own birthday party. During her two lensectomies, he installed scaffolding in her tiny eyeballs for the placement of IOLs, should she need or want them at a later date.

After her eyes had healed, Lyra wore contact lenses that when viewed in profile looked like alien space ships —discs with a sizable bulge in the middle. But as she got older (and stronger), changing Lyra’s lenses became difficult. I would hold Lyra tight while one Vision Center technician used a speculum to hold open her eyelids and a second technician changed the lenses.

When she was 3, we all agreed that changing Lyra’s contacts was too traumatizing and switched her to glasses. With no natural lenses, Lyra’s prescription is +22, and the lenses of her glasses are very thick. She wore Miraflex frames, a then widely available brand designed for the small nose bridges of babies and toddlers. They also work well for young children with Down syndrome, as they typically retain small nose bridges throughout life.

Miraflex is no longer an option. In 2020, the brand was acquired by the eye frame mega-conglomerate Essilor Luxotica Group, which promptly discontinued the line. Other brands, including Specs4Us and Erin’s World, also are designed for the unique facial features of people with Down syndrome. But it is a struggle for parents of children with a variety of special vision needs to find these, or other well-fitting, truly functional, frames.

And here’s why: Your local eye doctor does not have many patients with Down syndrome or other diagnoses that require specialized frames, so they are unlikely to carry them. Also, most optometry and ophthalmology practices do not accept Medicaid, which they must in order for a patient to use the Ohio Department of Health’s secondary state medical insurance, Children with Medical Handicaps (CMH). A pair of glasses for a child like Lyra can easily cost more than $500.

The Vision Center at Akron Children’s Hospital does their patients a gross disservice by not having an optical department. Unlike the offices of most eye doctors, the Vision Center’s patient population has an abundance of children who need specialized eyewear. And, like most children’s hospitals, Akron Children’s accepts Medicaid and CMH.

When I first wrote of this glaring optical oversight back in 2018, a team member of the Vision Center reached out to tell me that they would offer frames when they moved to their new location in the Considine Building in 2019. Yet as of today, the Vision Center still lacks optical care.

Lyra wore Miraflex frames for about four years. When she outgrew them, I began buying frames online and modifying them. Nose pads help keep the heavy lenses in front of her eyes, though it’s never as perfect as the frames designed for small nose bridges. And because the stems of frames designed for a typical child are too long for children with DS, I cut them with wire cutters, cover the sharp ends with silicone sleeves and re-bend them to fit around her ears.

On April 1, a letter from the Vision Center informed us that Dr. Hertle had retired two days earlier. Lyra has an army of support for her Down syndrome needs at school and through private therapies. But I have counted on Dr. Hertle alone for her medical eye care. I was shocked when I read the letter and momentarily felt panicked. However, change brings with it opportunities. I would never have left Dr. Hertle’s care. But as he’s no longer at Akron Children’s, we now will make the trek to Rainbow Babies and Children’s for truly comprehensive vision care.

This was published in the Akron Beacon Journal on Sunday, April 14, 2024.

Parenting & Family

Son finds his way after worrying about future

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On a recent Sunday at Akron Family Restaurant, I was reminded of one of my earliest Beacon Journal columns in which I wrote about my eldest son, Claude. In January 2017, he took me to lunch at Akron Family to discuss his existential anxiety.

Claude was a freshly minted college graduate who didn’t know what to do next. In fact, instead of graduating the previous spring, when he had all the credits he needed, he took an extra semester at the University of Michigan.

With three more decades of life under my belt than my son, I knew Claude would be fine even if I could not tell him precisely how his life would unfold. He is curious and hardworking, which has made him many things, including pretty smart. 

Claude met his closest friend at college the day they moved into the freshman dorms. Neal earned a degree in engineering, promptly left for Berkeley and began a Ph.D. program with a comfortable stipend. Claude envied Neal’s knowledge of what to do next, even if his friend wasn’t always satisfied.

“I sometimes think I should have taken a gap year after high school,” Claude told me over soup that day.

Thank God you didn’t, I thought.

My parents held entry-level jobs. My mother worked hard, mostly as a waitress, sometimes as a secretary, and lastly baking coffee cakes and fruit bars she sold at markets not unlike the Mustard Seed. My dad worked seldomly, usually retail when he did — a hardware store in Michigan, Circle K in Arizona.

Neither ever talked with me about going to college. After high school, I took classes here and there, including the University of Arizona and Wright State. Finally, at age 21, I settled in at Ohio State where I voraciously studied religion and French, receiving degrees in each at 26.

I set a different course for my children. “After high school,” I told them, “you go to college.” Not “you could” nor “you should,” but “you go.” However, I never pushed them toward, nor dissuaded them from, any particular major. “Just get a bachelor’s degree, that’s what matters.”

A gap year after high school, I feared, might easily lead to a long-term forestalling of college like me, or a permanent one like my parents.

But my children are different from my parents or me. They had a blueprint because I had gone to college and earned degrees. When they talked about juggling studying for tests and writing papers, I understood and could make suggestions.

Also, for four years as a single parent, I regularly brought home Pizza Bogo pizzas before heading off to night classes. I earned my graduate degree at age 44.

Today, my first three children have bachelor’s degrees.

In the years after that luncheon conversation, Claude did as I expected while doing things I could not have predicted. He worked a string of odd jobs, including a stint at Starbucks. They were not career inducing.

In the fall of 2019, Claude became an AmeriCorps VISTA and worked at the Summit Food Coalition, then located at Akron-Canton Regional Foodbank. He also worked several positions at Macaroni Grill to supplement his meager stipend. 

Six months later, the pandemic hit. Claude loaded boxes of food into vehicles at distribution events and learned much about food insecurity, who it affects and why, and that the best-practices model for combating hunger is food stamps, not food banks.

“I want a career in which I can make a difference,” he told me.

He applied to graduate programs in public policy in the spring of 2020 when the country was in COVID lockdown. Ohio State’s hiring freeze extended to assistantships, knocking out Claude’s first choice, the John Glenn School of Public Affairs.

Maybe it was his AmeriCorps credentials, but Texas A&M’s George H.W. Bush School of Government and Public Service offered Claude a full ride with a generous stipend. In August 2020, he packed up his car, left his cats with me and drove to College Station.

Two years later, he was offered jobs by the federal and state governments. Choosing which to pick was something I could discuss, but my life’s experience held no blueprint for this. I suggested he discuss it with his grad school adviser.

Claude works for the EPA in Washington, D.C., a city we’ve always enjoyed visiting. His friend Neal finished his Ph.D. program and recently spent a long weekend with Claude in D.C. Both appear to have arrived at similar points in their careers.

Now almost 30, Claude was home for a visit when we went to Akron Family. He comfortably explained over breakfast how the federal EPA works with state and regional EPA offices, along with other federal agencies. He believes he’ll have a long career with the agency; it suits him.

Eight years ago, I told Claude I wished I had a crystal ball to show him where he would land. But, then again, doing so would have interfered with the maturity and wisdom he’s gained along his way. As I wrote in 2017, a successful life rarely follows a straight line to some prize, nor should it. 

Now all I ask is that the next time Claude returns home, he retrieve his cats.

This was first published in the Akron Beacon Journal on September 17, 2023.

Parenting & Family

Farewell, Mr. Tressler

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This past January, my longtime friend Jen, who is my regular traveling companion and has made several appearances in these columns, called to tell me her father would soon die.

Several years ago, Mr. Tressler was diagnosed with early-stage Alzheimer’s. And, yet, he seemed himself when Jen and I talked to him on the phone in May 2021 while we toured Iceland and again later that year when we went to Peru.

In January 2022, Jen, who lives in Philadelphia, spent two weeks with her parents’ at their home in Painesville, where they’ve lived since 1980. She, her dad and her eldest daughter came to Akron to shop at their favorite thrift store, Village Discount Outlet on Waterloo, and visit me.

Over lunch at my home, Mr. Tressler recounted various times over three decades that he and I had visited, both with and without Jen. I had forgotten several of these accounts until he shared them. That I was in his long-term memories when he was no longer able to write his own name was an honor unlike any other.

Jen’s job as a triage nurse for a medical practice at the University of Pennsylvania periodically allowed her to work remotely. Every month or two, she’d come to Ohio to spend a week helping her family take care of her dad while also spending increasingly precious time with him.

During one of her stays late last spring, I drove my youngest two kids to Painesville where we spent the afternoon and dinner with Jen and her family.

Mr. Tressler seemed unchanged from January and, again, we talked of many things. While dishing up bowls of ice cream, he showed me his significant collection of ice cream scoops. Upon learning I had none, he gave me one.

Two months later, Mr. Tressler’s Alzheimer’s specialists told the family he was beginning to decompensate and would soon need full-time care. Jen and I were shocked, but like Delphi oracles, the specialists were tragically correct.

When Jen called this past January, I asked if her mother would be OK if I visited Mr. Tressler at Kemper House, where he was living. Some families prefer their loved one with Alzheimer’s to be remembered as they were without the disease. And, too, some people with Alzheimer’s are agitated by visits.

Mrs. Tressler told Jen she welcomed my visit, but then, just two days later and before I could make the trip, Mr. Tressler died.

I first introduced readers to Jen when I wrote of the 14 months that she, her husband, Milan, and their four daughters circumnavigated the globe beginning in August 2015. This past fall, after their two eldest daughters had graduated from college and high school, the family again left the country, this time to tour Central America and South America for several months.

They were in Patagonia, at the southernmost tip of South America, when Mr. Tressler died. Returning in time for the funeral proved overly complicated and costly. On my drive to the funeral, Jen called and asked if I could do something neither of us would have thought of before the pandemic: Zoom her into her dad’s funeral.

Jen’s mother, siblings and their spouses sat in the first row of pews at St. Gabriel’s Catholic Church in Concord. I sat behind them in the second row, holding my phone up so Jen could see and hear their parish priest perform the funeral rites.

Before he developed Alzheimer’s, Mr. Tressler could be described as gruff. He grew up in a working-class Ukrainian community in Reading, Pennsylvania, and married his sweetheart soon after they finished high school. He worked hard every day of his life and didn’t suffer nonsense. But he could also assess a person’s character with mystical accuracy. And if he found you measured up, you could forever count on him.

John and Elaine Tressler share a moment last fall.
Mrs. and Mr. Tressler share a moment last fall.

After Mr. Tressler’s. death, Jen and her siblings learned of their father’s unadvertised history of generosity. The people he helped and how he helped them revealed a man who understood firsthand what it meant to have little and that being poor is not a character flaw.

The priest shared many stories of Mr. Tressler’s quiet largesse, including the time he arranged and paid for the dental work for the city worker who collected the family’s trash each week.

Far too many people past the age of 30 have experienced the vicissitudes of a friend or family member losing their memories, personalities and lives to Alzheimer’s disease.

But, as I have shared in previous columns, current Alzheimer’s research is promising. Studies around the world, including those focused on people with Down syndrome, look to yield preventative and corrective treatments in the coming years. That is something everyone can welcome.

This was first published in the Akron Beacon Journal on Sunday, May 7, 2023.

Parenting & Family

New puppy is a fluffy bundle of joy and mischief

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For 40 years I have lived with German shepherds and Shetland sheepdogs, unfussy working breeds. Usually I’ve had one of each, the protective temperament of the German shepherds complemented by the gladly obedient Shelties.  

I train my dogs to be well behaved, not to do tricks. They follow me wherever I go, inside and out, and ride in the car with me most days, weather permitting. My current Sheltie, the fourth I’ve owned, often keeps my feet warm when I write. 

Perhaps I’m a bit boring having the same type of dogs for four decades, but the intelligence and steady personalities of German shepherds and Shelties suit me and my practical nature. 

Recently I discovered that old dog owners can learn new things.  

In mid-December, someone gave me a delightful present: a 12-week-old Yorkipoo. Half Yorkshire terrier and half miniature poodle, this 5-pound creature has captured the  adoration of my family like Harry Styles in a stadium full of Gen Zers. 

The names we’ve considered for our new boy include Steve, Roger, Frankie, Elroy, Odin. Someone suggested Hannibal and was promptly voted off the naming committee.  

I’ve taken to calling him Henry, which in French sounds a bit like “ornery,” an apt description for most puppies. Meanwhile, my 12-year-old son, Leif, insists upon calling him Ozzie. 

When waiting for him to do his business in the January cold, I summon my best Eliza Doolittle and call out, ” ‘enry ‘iggins, go pee already!” Leif, on the other hand, hollers “Ozzieozzieozzie” when he wants the puppy to come. My 10-year-old daughter goes with the flow, calling him Henry when she’s near me and Ozzie around her brother. 

It seems people have strong opinions about the names Henry and Ozzie. My neighbors say Ozzie will not do as it reminds them of Ozzy Osbourne. The groomer (who, after 23 years, has known all but my first two dogs) thinks Ozzie is an adorable name, which is what she writes on his appointment card. 

After weeks of the Henry-Ozzie debate, we’ve decided he can have two names. Most pets have endearing nicknames and still manage to come when called. 

Angus, my 6-year-old Sheltie, mostly ignores the puppy. That is, until I throw a toy. Angus races to the toy and makes it abundantly clear that only he may pick it up. Once he does, Henry barks at Angus, who soon drops the toy. Henry then grabs it and returns to me for another round of fun. 

Unlike Angus, my German shepherd, Otto, is as smitten with the wee canine as we are. During more than one virtual meeting I’ve had to explain that the loud moans of pain are those of my 90-pound dog being tormented by a puppy so small that Otto could eat him in two bites but chooses not to.  

On our daily 2-mile walks, Otto glides with long-legged strides that make his speed look effortless. Right behind him, Henry’s short legs pump up and down like mini pistons as he cartoonishly tries to keep up. 

Little Henry finds a big friend in Otto.
Little Henry finds a big friend in Otto.

My eldest son, Claude, was home and worked remotely for two weeks over the holidays. Even more practical than me, we often refer to him as the family monk. So I was shocked (and delighted) when I found him regularly putting Henry on his chest under his sweater where the puppy would sleep while Claude sat in on conference calls and meetings. 

Just before Christmas, Claude and I found $5 dog sweaters at Aldi’s. Later that night, he brought Henry to me all decked out in a sweater with “Fa-la-la-la-la” written on the back. 

“I don’t know what’s going on,” said Claude, “but I want to buy this puppy more outfits and dress him up.” 

We soon did just that.  

I’ve always thought of my Shelties as having big-dog personalities in smaller-sized bodies. I had no idea a far smaller dog could also come equipped with outsized personality and intelligence. 

At Henry’s first appointment, my longtime vet and friend Julie Brown-Herold was not surprised by our latest addition to the family. Instead of asking why I decided to adopt my first smidge of a dog, she told me how wonderful all these poodle mixes are.  

“When our golden retriever died,” she said, “I didn’t want another big dog. Our kids are grown, we’re getting older, so we got a little poodle mix, too.” 

Up until a month ago, I would never have dreamed of clearing out a dresser drawer for dog clothing. But that’s just what I did earlier this week. I also didn’t foresee buying a sling to carry my puppy around like I used to carry my human babies.  

While my dogs now come in large, medium and extra small, each holds an equal portion of our hearts. 

This was first published in the Akron Beacon Journal on Sunday, January 22, 2023.