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Wabasha parents find community in raising kids with delays and disabilities

Wabasha parents find community in raising kids with delays and disabilities
Friday, October 22, 2021

Caroline and Conrad

by Maggie Sonnek

Our days follow a rhythm: carpooling, helping with homework, making dinner, picking up toys, reading stories. Blended with the ordinary and mundane are physical therapy appointments, IEP (Individualized Educational Plan) check-ins and speech therapy sessions. We all have a child who needs extra help. Benjamin, a 2-year-old with delayed walking. Conrad, a 5-year-old with Autism. And my daughter Olive, a 6-year-old with speech apraxia.

The saying "It takes a village to raise a child" is as true for us as it is for all parents. Our journey to finding our village took a turn when we traded in larger cities – La Crosse, Rochester and Minneapolis – for slower-paced-southeast Minnesota. But, would our children receive the services and care they would need? Would this move prove to be the best decision for us all? And, would we find our village?

Conrad's journey

Caroline worked as La Crosse's community development administrator for about eight years when she started yearning for a different challenge. Expanded leadership. Increased opportunities to use and develop her skills. When she was offered the role of city administrator in Wabasha, she jumped at the chance. And while she spends working hours in Wabasha, her family decided to settle (for now) in Winona.

This decision came after learning their 5-year-old son has severe Autism.

"What we thought was a smaller delay continued growing into larger challenges. Throughout the pandemic, as we were staying home and spending more time together, we noticed Conrad lacked communication skills and wasn't able to function like his peers," the mother of three – Conrad has twin 2-year-old sisters – says.

"We realized we had to get him connected to services and pursue a diagnosis."

That diagnosis came in June 2021 after working with Michelle McElligott, PsyD at Gundersen Health System in La Crosse. Conrad was diagnosed with Autism Spectrum Disorder Level 3.

"We're living with the reality that our son's life might not be what we envisioned," Caroline says. "We're grieving a future we thought we had and accepting a new reality."

When deciding whether to stay in La Crosse, move to Wabasha, or find somewhere in between, Caroline and her husband David asked the question, "What's best for Conrad?" That meant Winona.

"I'm learning that the size of the community doesn't impact us as much as I thought it would. Rather, it's all about us adjusting our own expectations," Caroline says.

Conrad splits his time between Partners in Excellence Autism Therapy Center in Winona and a special education classroom.

"Eighty percent of his time is spent in a class specifically set up for kids with Autism," Caroline says. "Before we found this formula of services, it was like we were forcing Conrad to function in a classroom that wasn't right for him. With help from special education teacher Sarah Langowski and other therapists, Conrad is exposed to a mainstream classroom and specialized services. It's clear he feels supported and understood."

Caroline and David have found another village tribal member in their nanny Jennifer.

"Instead of walking away after a long day, she continues to find new strategies to work with Conrad," Caroline says. "She's not giving up on him."

Benjamin's journey

Last October, Kelly and Rob Wilson, along with their young son Benjamin, moved from Rochester to Wabasha.

"We love it here," Kelly, a former special education teacher, says. "We just love being near the river and in a small town."
Rob works at Anchor Point as a music director and youth pastor, while Kelly stays home with Benjamin and cleans a local Airbnb a couple of times a week.

When Benjamin turned one, Rob and Kelly made a note that he still wasn't walking. Not worried, they continued to observe his gross motor development. In April, the 15-month-old still wasn't walking.

That's when their primary care provider, Dennis Spano, MD, Gundersen St. Elizabeth's Hospital and Clinics, referred Benjamin to physical therapy at Gundersen St. Elizabeth's.

Kelly Wilson (left) watches as physical therapist Elizabeth Nofsinger (center) helps Benjamin walk to dad, Rob (right)

Kelly Wilson (left) watches as physical therapist Elizabeth Nofsinger (center) helps Benjamin walk to dad, Rob (right)

During their first session, physical therapist Elizabeth Nofsinger, a mom of two young kids, got down on the floor and started playing with Benjamin. He laughed and played along, not knowing that he was actually working.

"Elizabeth challenged Benjamin in a natural setting. She would gently push him to his next potential limit," Kelly says. "He would be playing and not even notice he was walking."

Elizabeth adds, "If kids can be in a fun environment, it helps us get a better view of what they're doing and why. After that, we're able to create bite-sized goals that caregivers can do at home."

Which is exactly what happened. During dinner in late August, Benjamin took three steps on his own.

"Rob and I were in complete shock. Like, did that just happen?" Kelly smiles. "He was ready."

In September, Benjamin graduated from working with Elizabeth. However, she suggested Benjamin begin working with specialists from Hiawatha Valley Education Program (HVED), a resource made possible through Help Me Grow. An initiative of the State of Minnesota, Help Me Grow partners with all local service agencies, offering resources for young kids (birth-three years old) and their parents.

An early intervention teacher and 18-year veteran of HVED, Tracy Brunkow, and occupational therapist Stacie Ruskell, met with Kelly, Rob, and Benjamin at their home.

"Tracy connected with Benjamin right away," Kelly says. "She also reassured us as parents that we are doing the right things to help Benjamin."

Kelly says Stacie noticed Benjamin's pronation – his feet lean in when he walks – and got him set up with braces to help fix this.
But, the braces, occupational therapy and early intervention are just one part of the journey. Kelly adds, "Our story isn't quite complete without acknowledging that our family, friends, and church have all rallied around us as part of our village."

Olive's journey

When we moved our family from St. Louis Park to Kellogg, our then-20-month-old daughter Olive said two words: "Eee" and "Ma." We attributed her lack of speech to dozens of ear infections throughout her first 18 months of life.

Soon after the move, we began sessions with early intervention teacher Tracy Brunkow. Like the visit to Benjamin's home, Tracy came to our house weekly.

Olive Sonnek on her first day of school in Wabasha

Olive Sonnek on her first day of school in Wabasha

"It's so important to get help early. Forty-six percent of kids who are referred and receive early intervention services exit special education services by kindergarten," Tracy told me over the phone. Even though Olive no longer qualifies to receive services through HVED, we've stayed in touch. "Early development provides the foundation on which language and motor skills develop. Intervention at a young age can change the trajectory of a child's life."

When Olive turned 3, Kay Miller became part of our village. Kay, a speech-language pathologist for Wabasha-Kellogg Public Schools began working with Olive. The progress was slow and steady, but Kay never gave up. Nor did Olive.

However, after more than a year of speech therapy, Kay approached us, suggesting we reach out for another assessment – this one to evaluate for speech apraxia. I'd never heard of speech apraxia, but after a quick Google search, my heart sank.

"An uncommon speech disorder in which a child has difficulty making accurate movements when speaking," I read. "The brain struggles to develop plans for speech movement. To speak correctly, your child's brain has to learn how to make plans that tell her speech muscles how to move the lips, jaw and tongue in ways that result in accurate sounds."

Both Eric and I were shocked. We were even more stunned to learn – after visiting Gundersen Health System in La Crosse – that, indeed, Olive was diagnosed with speech apraxia as well as a phonological processing disorder.

Like Caroline and David, we had to process this diagnosis. And grieve. Life would look different for Olive than it does for our other two, neurotypical kids.

We began weekly trips to La Crosse for hour-long therapy sessions paired with twice-weekly in-school speech therapy visits. During one particularly hard morning, I teared up, sharing a few of our struggles with Jody Walter, speech pathologist at Gundersen Health System.
While playing campfire on the floor with Olive, Jody said to me, "This is fixable. Olive has so much potential and room to grow into her own person. Trust the process."

In August, Olive began working with Kinsley Hackman, a speech-language pathologist at Gundersen St. Elizabeth's. Just a mile from our house, this move – although we were sad to end our visits with Jody – saved us time and energy. Today, Olive continues weekly visits with Kinsley and twice-weekly visits with Kay.

How our villages help us carry on

It's the people in our village – Elizabeth, Dr. Spano, Stacie, Amber, Tracy, Sarah, Dr. McElligott, Jennifer, Kay, Jody, Kinsley, our families, friends, and communities – that give us the energy to do the things parents do: make the coffee, find matching socks, feed the dog, make it to that 9 a.m. meeting on time, and switch out laundry before it starts to smell. And most importantly, love our kids. Not in spite of their disability, but who they are – and who they're becoming – because of it.

They have continued to show us over and over again what it means to press on, find creative solutions, and stay kind. Elizabeth, Dr. Spano, Stacie, Amber, Tracy, Sarah, Dr. McElligott, Jennifer, Kay, Jody, Kinsley, our families, friends, and communities: it's because of you that we're able to do our most important job as parents – love our kids.

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