As a parent of an autistic person, an advocate, and a governance board member of a charter school for students of all abilities, I believe autism is a way of life. In honor of Autism Awareness Month, here is the story of my experiences with autism spectrum disorder (ASD) and how it played a role in creating a specialized school in my community.
I will never forget the moment I realized my son had autism. I spent months questioning why he wasn’t talking as well as his peers, observing behaviors such as lining up toy cars in a perfectly formed row, and watching him avoid eye contact.
I researched online, and every symptom pointed to one thing: ASD. Still, I wasn’t sure.
Then one day, I had an idea. Because my son is the youngest of three boys, I decided to unearth old family home videos of my older children at the same age as their younger brother to see whether there was indeed a difference.
As I watched, it only took me minutes to realize my 3-year-old child was markedly behind in language and social skills. After communicating my concerns to his father, Gregg, we immediately sought a formal diagnosis.
The diagnostic process would prove to be more challenging than I had expected, and I had to advocate with great effort to obtain the referral needed to see a specialist for testing.
In June 2007, after finally getting an appointment and going through a day-long testing, my son received a diagnosis of autism. It validated what I already knew, and gave me the paperwork required to pursue the therapies he needed.
It is at the point of diagnosis that grief hits many parents and caregivers. Suddenly, aspirations they had for their loved one become shattered dreams. However, sadness is quickly replaced with an urgent need to put aside the “what-ifs” and focus on the task at hand — finding therapies that can help.
Like many other parents faced with this challenge, I spent the initial years after my son’s diagnosis coordinating in-home therapy, navigating school programs, and investigating and implementing alternative treatments, including specialized diets and supplements. I even started a support group for autism in our community.
Autistic people have many strengths, and some display unique talents. Yet they may learn differently, so finding an educational system that accommodates their diverse learning style is critical.
Educationally, our local school system did its best to provide what it could.
Because funding is limited, and the socio-emotional, academic, and sensory requirements of autistic students are so significant, many school districts in the United States struggle to accommodate the needs.
And my school district was not immune to these challenges.
As my son entered middle school, it became very apparent he would need an educational environment more tailored to autism.
Shifting into high gear and diving into research, I came across a new school located in Minnesota specifically for autistic children grades 7–12.
Lionsgate Academy was in its beginning stages at the time. Yet, as I learned more about this innovative new school, I became convinced it would be a perfect fit for our son.
However, there was a hurdle to overcome. Lionsgate was a 5-hour drive from our home in Wisconsin.
Determined to give our child the best possible chance at the life he deserved, we began tossing around the idea of one of us moving to Minnesota so he may attend Lionsgate. But first, we needed to tour the school to see whether it met our expectations.
In 2015, his father drove to Lionsgate to attend a student-led open house. What he witnessed was astonishing. Most noteworthy was how the students spoke of their love for their school. It was a place where they felt like they belonged.
On the drive home, thinking about how difficult it would be to move closer to Lionsgate so our son could attend, Gregg had a revelation: Why not build a school like this in Wisconsin?
He also put out a call to action for supporters, and it did not take long for many community members to step in and join the cause.
It also did not take long for the first roadblock to appear. Wisconsin state law did not allow a charter school specifically for grades 7–12 to exist in a K-12 district, such as ours. Because of this, state law would need to change to create this new school.
Not to be deterred, Gregg, along with a dedicated group of community members, made numerous trips to the state capital in Madison. The end goal was to change the statute with the support of state politicians.
These efforts were successful, and in 2017, the Wisconsin Joint Finance Committee passed a motion that ultimately changed the law and opened the door for establishing the school.
In the fall of 2017, a governance board consisting of local business leaders, educators, and parents, including me, came together. Our mission was to build a unique school that delivered an individualized program tailored to each student’s specific needs.
The fledgling board chose an ambitious opening date for the proposed school of September 2018. This time frame gave us 1 year to find a location, customize it for sensory needs, develop a curriculum, hire staff, recruit students, and raise funds needed to deliver an educational experience above and beyond the typical academic setting.
Essentially, we were building a school from the ground up.
During the first few meetings, the board voted to name the school Lakeland STAR School/Academy (LSSA).
The STAR acronym stands for “strong, talented, adventurous, remarkable,” and the school would accommodate 7–12-grade students of all abilities, with a focus on autism.
It would be a charter under our local Lakeland Union High School (LUHS) district.
As the months ticked by, LSSA managed to acquire a building, and I volunteered to head the building committee to help coordinate remodeling efforts.
Utilizing the Lionsgate model, we transformed the space to accommodate our mission of providing a sensory-friendly environment. Local architects and contractors donated a portion of their time and materials to accomplish this renovation.
The LSSA board, in conjunction with LUHS, hired Eric Mikoleit as director. We also partnered with the Howard Young Foundation, a local charitable organization, and Ascension, a regional healthcare group, to acquire healthcare staff.
This included physical therapists, speech and language therapists, and mental healthcare professionals.
Simultaneously, LSSA board members created the Lakeland STAR Golf Outing, an annual golf tournament to help raise funds necessary to benefit the incoming LSSA students. Support for this endeavor was incredible.
In the end, the June 2018 golf outing raised $429,000. In 2019, the event gained even more momentum, raising nearly $680,000.
Around the same time, statewide support for the new school grew. In May of 2018, Gregg, several local leaders, and the then State Senator Tom Tiffany traveled with the then Governor of Wisconsin Scott Walker to Lionsgate. The trip would help state lawmakers envision what Lakeland STAR School/Academy would soon become.
In an article in The Lakeland Times, Governor Walker shared his perspective:
“The founders of the STAR Academy in northern Wisconsin are wise to use Lionsgate as a successful model for success. This will not only provide a great opportunity for students in northern Wisconsin to excel but will most certainly be a draw for families from across the state to come to this new school.”
In September 2018, after years of hard work and meeting urgent deadlines, LSSA opened its doors to new students. It was the first charter school of its kind in Wisconsin.
That day, a diverse group of autistic and non-ASD students, including my son, walked into a school that, for most, would change their lives for the better.
Along with an individualized academic program, LSSA incorporates equine therapy through Scholl Community Impact Group, a PAES (Practical, Assessment, Exploration, System) lab, yoga/mindfulness, community enrichment activities, social outings, a driver’s education program, and a therapy dog named Indigo.
Also, LSSA houses an on-site psychotherapist and full-time occupational and speech and language therapists.
LSSA and the governance board continue toward the future. Because we are at full capacity in our current school building, plans are in motion to construct a larger facility to accommodate around 200 students.
Also in the planning stages is a transitions center for young adults with all abilities to learn the skills necessary for employment and independent living.
My experiences as a parent and autism advocate have taught me that autistic individuals possess immeasurable brilliance and unique strengths.
I believe autism is not a disability. It is a unique capability, the magnitude of which we have yet to understand fully.
Perhaps my 17-year-old son says it best: “Although I struggle with some things, my autism gives me abilities other people might not have. Some of the smartest people in the world have autism. Just because autistic people act a certain way does not mean they aren’t intelligent.”