Adjusting expectations for child with disability

Effective parenting requires a tailored approach for each child’s unique personality. But when children have a diagnosis that makes them irrevocably different from their parents, the best approach isn’t always readily evident.

Holly and Lyra earlier this summer

In his book “Far from the Tree,” Andrew Solomon combines research and interviews with parents and their children who have a variety of such diagnoses, including deafness, dwarfism, autism and more. Repeatedly, parents recount struggling over difficult choices, such as cochlear implants, medical bone breaking or even if children should remain in the home with their families.

I read Solomon’s book in 2012 soon after my 8-year-old daughter, Lyra, was born with Down syndrome (DS). And while I read the chapter on DS closely and repeatedly, what struck me most was how parents throughout the book must mind the boundary where helping can cross over to harming.

“Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources,” writes Solomon. And while I insist on people-first language — Lyra is a girl who has DS, she’s not a “Down syndrome girl” — it’s also true that having an extra 21st chromosome literally affects every cell in her body.

Down syndrome causes intellectual disabilities and often other comorbidities (Lyra, for instance, was born with bilateral cataracts). As her mother, I have tried to help her maximize her potential so she can live her life to the fullest and pursue whatever dreams she may have.

But what if, in my efforts to support her, I lose sight of the fact that DS is an essential part of who she is? And if I do, is it because I have a problem accepting who she is? As with some parents in Solomon’s book, what if who I expect Lyra to be fundamentally conflicts with who she is and will be?

The weeks following Lyra’s birth were filled with myriad medical appointments. I also anxiously tried to learn all I could about DS and early interventions. One afternoon, just days after her birth, I held my baby in my arms and cried over her diagnosis. And then I carried on.

During Lyra’s first five years of life, I took her to weekly speech, physical and occupational therapy sessions. I patched her eyes to help her see better, I squeezed her into spandex therapy pants to help her move better. I used a series of straws that were successively harder to suck on to train her tongue to stay properly placed in her mouth.

Lyra’s father and I soon described our daughter as high functioning, a term I’d never considered with any of my other children. I now wonder if that term, which is falling out of use in many disability communities, doesn’t belie an attachment to typical accomplishments.

Just prior to her entering kindergarten, one of Lyra’s preschool teachers told me she was glad we’d advocated for Lyra to be in a general education classroom. The difference, however, between preschool and kindergarten is substantial.

Lyra struggled. We had her repeat kindergarten in the 2019-2020 school year and when we met with her educational team in February 2020, everyone agreed that Lyra would be first-grade ready the following fall.

The next month, COVID-19 stopped everything. As hard as remote learning was for most students, it was particularly devastating for those with disabilities like Lyra’s. The full impact of a year without in-person schooling is hard to assess, but it’s clear Lyra regressed.

As a result, I have been obsessively ruminating: Am I doing enough to help my daughter? Or do I need to adjust my expectations? The answer is never clear and it’s probably a little of both.

When Akron Public Schools finally reopened in March, Lyra was elated to return. At least for the first weeks. In early April, she began telling me she didn’t want to go to school. At the same time, her educators struggled to get her to work or engage in classroom activities.

After the school year ended, Lyra’s father and I had a candid discussion with Lyra’s intervention specialist. This fall, Lyra will attend a multiple disability classroom where she’ll have fewer classmates and worksheets, less pressure and more one-on-one instruction. We hope this will help Lyra to love school once again while catching up on what she’s not fully mastered.

There is much about Lyra that is easy to celebrate and rejoice in. But it’s also easy to want her to succeed on our terms — to flourish in school, to attend one of the many college programs springing up for people with intellectual disabilities, to find acceptance in the world, to let her voice be heard far and wide.

And it’s not wrong to want that. But sometimes it’s hard to know if our goals for her may not actually limit all she is and can be. If I pray for anything, it’s for discernment.


Donor families find comfort in knowing lives were saved

In November 2014, Lynne Daus saved four lives when she resuscitated her daughter Jordan after an accidental overdose. Three days later, and after extensive testing, Jordan officially was declared brain dead even as the rest of her body worked as robustly as that of any healthy 18-year-old. 

Jordan Daus photo courtesy of Lynne Daus

It was then, at one of the worst moments in their lives, that Jordan’s parents consented to have their daughter’s organs donated.  

“It may sound strange, but donating Jordan’s organs gave us some happiness in the midst of our grief,” Lynne told me when we recently spoke.  

Organs donated from people who have overdosed can be profused, or flushed clean, of any residual toxins. However, as with all organ donation, donors who’ve overdosed must be in a hospital and ventilated when declared brain dead. 

These and other rigorous requirements all but guarantee that the deaths of organ donors are traumatic in nature.  

While some donors’ wishes are documented on their driver’s licenses or living wills, other times they are not, and families already confronted with extreme loss must quickly decide whether to allow the donation of their loved one’s organs. 

Lynne was no stranger to the process of organ donation, which she had discussed at length with Jordan and her other daughter, MaKenna. For five years, Lynne worked as an administrative assistant for a cardiothoracic transplant surgeon. As such, she came to know many organ recipients and, therefore, understood the value of donating her daughter’s organs. 

“Even in that moment, you find a place to have something good come from your loved one,” Lynne said. 

On Christmas Eve 2014, just a little over a month after Jordan’s death, Lynne learned that Jordan’s heart, liver, pancreas and one kidney had gone to four men in two states ranging from ages 48 to 71.  

At six months post-donation, recipients and donor families are given the option to contact one another, but only after agreed upon by both parties, which Lynne did. 

She received a letter from the recipient of Jordan’s kidney and wrote him back immediately. And then, for whatever reason, he did not write again for five more years. 

Roman Dann received Jordan’s liver and he, too, wrote to Lynne as soon as he could and the two regularly corresponded. However, Roman was hesitant to meet. Then, several months later while at her job at Chagrin Falls Family Health Center, Lynne helped a patient from the same town and with the same last name as Jordan’s liver recipient. 

“Are you related to a man named Roman?” she asked him. 

“That’s my brother,” he replied. 

“I’m Jordan’s mom,” Lynne told him, and they both burst into tears and hugged before going into the hallway to sit on a bench and talk. Roman felt that was the sign he needed and arranged to meet Lynne. Since then, Lynne and Roman have regularly visited Jordan’s grave together, including on Jordan’s birthday and Roman’s transplant anniversary. 

“Roman has taken such good care of Jordan,” Lynne told me.

On one hand, she means Jordan’s physical essence, her liver that gives Roman life. But mostly it’s in a larger, more spiritual sense.

“Roman said he’s always known that Jordan’s writing this story,” Lynne told me. “He and his wife are now like family to me.” 

Lynne Daus stands at her daughter Jordan’s gravesite with Roman Dann and his wife, Susan Dann.
Lynne Daus stands at her daughter Jordan’s gravesite with Roman Dann and his wife, Susan Dann.
Photo courtesy of Lynne Daus

In my last column, I described my childhood best friend, Kelly O’Brien Steverson, who is alive today because of a liver and kidney transplant she received from a woman about our age. At the time that the organs became available, there were terrible snowstorms in Indianapolis where Kelly had been in an ICU on continuous kidney filtration for four months. She imagines her donor likely died in a car accident.

But Kelly doesn’t know for sure because she’s not yet decided to contact the donor family. It is common for recipients to feel not only overwhelming gratitude for the organs that saved their lives, but also no small measure of guilt that someone else’s death provided them the opportunity to live. 

Lynne works with a donor family support group through Lifebanc, the organization responsible for facilitating organ donation in Northeast Ohio. Members of other donor families often tell Lynne they’ve not heard from the recipients of their loved one’s organs and hope that they will. For many donor families, hearing from recipients is something they eagerly await.  

After I spoke with Lynne, I called Kelly and told her this.  

“I just don’t know what to say,” Kelly told me.

I told her that Lynne said even a store-bought thank-you card with a signature means the world to donor families.  

It’s important to talk with your family about organ and tissue donation. Having a loved one die in a traumatic way is nothing we ever hope happens, and for most of us it won’t. 

But if, God forbid, it does, there is some measure of comfort in knowing that out of tragedy other lives may be saved.  

“I miss Jordan terribly,” Lynne told me, “but through her gifts of happy people living life, it gives me gratitude knowing something good has come from my loved one. It’s a legacy they leave behind.” 

To register to be an organ, eye and tissue donor, go to this Lifebanc link.

This column was first published in the Akron Beacon Journal on June 13, 2021.