Scotty Wentzell: Navigating Unknowns with a Child with Special Needs

WELLNESS-March 2014
By Lisa Belisle
Photographs by Greta Rybus

A Young Man and His Family Find Support at the Morrison Center and Joy in One Another 

As snow lovers who had grown up in central Massachusetts, Scott and Lisa Wentzell imagined themselves raising a family in the Maine mountains. In 1993, Scott found a job in the marketing department at Sugarloaf and the two of them were putting down roots in his mother’s hometown of Farmington. By the fall of 2000, Lisa was pregnant with their first child. Lisa’s pregnancy with Scotty had been uneventful. A week overdue, their doctor sent them for a routine ultrasound and a fetal non-stress test. They knew immediately that something was amiss. Scotty’s heart rate was decreasing. The family prepared for an emergency Cesarean section at Franklin Memorial Hospital. A pediatric ambulance was called up from Portland.

Scott remembers, “We were standing in the neonatal unit, and Scotty had every piece of equipment in the room hooked up to him. I look over to my right and there’s a donor plaque for a capital campaign that happened when they built that part of the hospital. It said that all the equipment in the room was provided by Jim and Barbara Flint. Those were my grandparents: Scotty’s great-grandparents.” Scott felt then that something bigger was at play. “It told me right from the start that everything was going to be ok. It was a scary time, but we knew that we were going to get through it. And with the help of family, friends, and a lot of great professionals, that’s the way it worked.”

While still an infant, Scotty Wentzell had two major heart surgeries to correct a constellation of serious defects known as Tetralogy of Fallot. His cardiac problems were only the beginning. They would soon take a backseat to the developmental challenges he would encounter, stemming from a rare disorder known as Dubowitz syndrome. As medical professionals learn early in their careers, the term “syndrome” is one that rarely leads to answers. Instead, it is a grouping of physical signs and symptoms out of which a diagnosis may be fashioned. Diagnosing a syndrome does not explain why a patient has a problem, or what to do about it.

This was the case for Scotty. At the time he was diagnosed by a genetics specialist, his was one of only 300 known cases of Dubowitz syndrome. Aside from sharing certain distinctive facial and physical characteristics, Dubowitz syndrome affects each individual differently. Even the most modern technological advances would not provide definitive information for the Wentzell family. Lisa was the second woman (after actress Glenn Close) to have genomic sequencing done by the National Institute of Health (NIH) in Bethesda, MD. Despite this intensive genetic investigation, “in the end,” Lisa said, “the diagnosis didn’t change anything.”

Lisa and Scott knew that their son would have special needs, and decided they would move closer to the services provided in the Portland area. The Morrison Center, formerly known as the Cerebral Palsy Center and located in an old World War II building on Martin’s Point, was an important resource for Scotty and his parents. According to the Morrison Center’s director, Mark Ryder, the mission of the Center is to provide comprehensive, individualized support services for people with disabilities of all ages. In the case of the Wentzell family, Morrison Center services such as physical and occupational therapy helped them to understand that Scotty’s disabilities were equally matched by a strong set of emotional and social aptitudes. “The Morrison Center was the first place that took the fear away for us,” says Scott, now on the Board of Directors at the Morrison Center. “They’re so empowering there, and they’re so inclusive of the family, that they made us feel comfortable about who Scotty was.”

After interviewing Scott Wentzell for the Dr. Lisa Radio Hour, I asked if he, Scotty, and Lisa would be willing to meet with me at the Morrison Center. Recently rebuilt, and now located in Scarborough, the 31,000-square-foot Morrison Center features an integrated preschool, K-12 education services, a well-landscaped outdoor area, and a greenhouse for its adult Seedling Program. With its newly completed satellite campus in Wells, the Morrison Center currently has the capacity to serve 170-190 individuals.

Given the impressive physical structure of the Morrison Center, and dedicated staff such as Mark Ryder and Gwen Sartoris, who accompanied us our tour, I was immediately won over by their mission. Then Scotty showed up and stole the show.

Thirteen-year-old Scotty communicates through a mixture of touch and pictures. Although he is unable to speak, he is still very much a part of his world. His well-documented adventures have taken him from the Special Olympics at Sugarloaf and the Pine Tree Camp in Belgrade, to the Challenger Division of the Deering Little League in Portland. Now a seventh grader at Greely Middle School, he is well known by his classmates and his community. His mother, who cares for him full-time when he is not in school, brings a large tote bag whenever they leave home. Among other items, the tote contains multiple binders of photos bearing witness to Scotty’s life. Scotty shares these photos eagerly, and uses them as means of helping others understand his needs and desires.

His mother has taken so many photos that her iPhone regularly runs out of memory, as it did (once again) the day we met.

Scotty is obviously familiar with iPhones, and leans into me as we scroll through the pictures on my phone together. After playing a short game of basketball with his father in the Morrison Center gymnasium, Scotty returns and gently grabs both of my hands, holding them up between us. His father suggests that Scotty would like me to clap for him. I do so, and Scotty moves on to the next adult in our group, asking for the same. Soon our entire group is clapping for this gregarious teen. He grins in appreciation.

Lisa tells me, “The day we left the Morrison Center for the Cumberland school system, we didn’t know what to expect, but the kids embraced him. They said, ‘Scotty is ours.’ They read to him and help him out in gym.” Scott agrees, “The transition into the public schools was a little daunting, especially as I started to recall my childhood experiences—and particularly what I witnessed with special needs kids. But within the first week, all those fears melted away. It became clear to me how much has changed.”

It seems true that much has changed. Morrison Center Education Director Gwen Sartoris tells us that students are now categorized as “typically developing” or not, rather than  being called handicapped, as they once were. At the Morrison Center, and in public schools around the state, the goal is to create “the least restrictive environment possible,” in which students might learn and grow. In creating the least restrictive environment for children and adults who are not typically developing, individuals like Scotty Wentzell are helping us to see that building flexibility into a system can benefit all.

Individuals like Scotty Wentzell are also helping us to understand that there are some things we may never know, and that this fact may become largely irrelevant. The Wentzells could not know why Scotty was born the way he was, or how his life would affect other people. Jim and Barbara Flint could not have known how important their gift to Franklin Memorial would be to their great-grandson, Scotty Wentzell, on the day of his birth.

Scotty Wentzell shows us that it is the living, and not the knowing, that makes a life.

 

Hear more from the Wentzell family on the Dr. Lisa Radio Hour + Podcast.

Morrison Center  |  60 Chamberlain Rd.  |  Scarborough  |  morrison-maine.org

 

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