Mothers Continue To Spread Awareness

Posted

“I don’t remember when I realized something was off. Nathan was hitting his developmental milestones, he made eye contact, he crawled, he walked, but he didn’t play with toys in the way that you would expect,” said Lynn Sellers, a special needs mother and co-founder of Montgomery County’s Autism support group, TASC. “I remember the moment I was handed the evaluation form that said he was autistic. Everything caved in around me, all of my hopes and dreams for this child that I had prayed so fervently for, shattered. I think that is a moment that most special needs parents experience. Now, I realize that it sets us on a different journey. A trajectory that is definitely challenging but just as rewarding and bends towards the positive in ways that I never anticipated in the beginning. I am so grateful for the surprises along the way.”

One of the bigger surprises would be TASC (The Autism Support Connection), a support group for special needs families that Sellers and fellow autism parent Kim Draper founded in 2011. This June will mark the tenth anniversary since Sellers and Draper decided to take charge and begin providing the resources they and other special needs families desperately needed within the rural community.

Concerned about her then one-year-old son’s atypical development, and his ability to spell out words like “elephant,” and “jellybean” with his brightly colored magnetic letters, Sellers took him to his pediatrician. 

Like many parents of children on the autism spectrum, her concerns were brushed aside because Nathan was physically healthy and exhibiting above average intelligence with his ability to recognize letters and numbers. It wasn’t until he entered into the preschool program at (then) Coffeen Elementary School that her concerns would once again be brought to the forefront, when educators Lisa Isaac and Jeanne Winkler noted that his social and verbal development was not on par with his peers.

Like Sellers, Draper would also discover that her oldest son, Jack, was autistic through the Hillsboro School District, during his kindergarten year at Beckemeyer Elementary School.

“Bill and I both spent the majority of our adult lives working with kids, him as an educator and band director and me as a speech therapist and teaching piano lessons. Being around children so much you kind of get typical and non-typical development, but even as ‘professionals’ we missed it. Jack hit all the typical milestones, he was verbal, he was social, but he did have some highly specialized and unusual interests. He could play any instrument he got his hands on and he especially loved to drum. He could pick up anything and start drumming, two books, a set of quarters, straws, literally everything. We used to keep a bucket of the items he would drum with,” Draper said, with a smile at the reminiscence. “But Bill is very musical and I am musical, so we never thought of autism. We just thought he was kind of quirky and really liked music.”

His kindergarten teacher Shonda Ronen initiated Jack’s autism diagnosis through Mid-State special education. When their son Owen, the youngest by two years and one week, started preschool they once again found themselves seeking out an autism evaluation. This time they turned to TAP (The Autism Program) in Springfield, and after a thorough evaluation they discovered that he too fell on the autism spectrum.

“Owen presented in a manner more typical with what are traditionally seen as characteristics of autism,” Kim stated.

Prior to becoming mothers, Sellers and Draper had a professional relationship from working together at Coffeen Elementary School, Draper as a speech therapist and Sellers as an American Sign Language interpreter for hearing impaired students. However, it wasn’t until Sellers’ son entered Pam Hiller’s class at Beckemeyer Elementary school and Hiller, a cousin of Bill Draper’s, realized that both families were struggling under the weight of their children’s sensory issues that Hiller put the two women back in contact with each other.

Sensory processing disorder (SPD) is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. It often presents in conjunction with autism.

“Pam put us together, and we started having conversations in the elementary school parking lot. We would talk about our children’s diagnoses – relating frustrations and celebrating new skills,” said Kim. “Owen’s sensory issues were all consuming in the beginning and that made our lives very lonely. We couldn’t go to church, we couldn’t play at the park, we couldn’t go to the grocery store. There were no play dates or subsequent new friendships with fellow parents. I think that every family that deals with SPD in any form experiences isolation because you never know what is going to trigger it. Having a fellow parent, who was also in the trenches, was life changing for all of us.”

The mothers would also cross paths in Springfield, where both periodically attended lectures and group meetings held by the Springfield chapter of The Autism Society of America. The meetings were as much of a hardship as a help, due to the 60 mile trek both to and from Springfield on weeknights, where no childcare was provided. Around the same time, local educators began talking to Kim about starting a support group locally.

“At first I just brushed it off because I didn’t think that I had the time to do something of that scale. The more I thought about it, and Lynn and I discussed the idea, it began to take a life of its own,” Draper explained. “I wanted anything that we did to include childcare. That was based purely on the experience of trying to attend the Springfield meetings where one parent would always have to stay home to take care of the kids. We both wanted something that would include the entire family, not even realizing the biggest impact, and most important thing that came about as the result of TASC, friendships for our kids. We just wanted an environment where our kids would be well taken care of by people who understood autism, not even getting that there is a whole social component for them until my boys started talking about their friends from TASC and ‘friends’ became a part of their everyday vocabulary.”

The TASC group officially began with sensory friendly movies at The Orpheum Theater in Hillsboro in June of 2011. With the exception of 2020 when the COVID-19 virus necessitated a temporary cessation of the sensory friendly films, the Eisentrauts have worked alongside TASC to host free sensory friendly showings once a month for the last decade. Sensory friendly means that the volume of the movies is reduced, lights are left on and the families are allowed to bring in their own snacks as some children have special tactile or dietary needs. It also means that those in attendance can verbally stim or move about the theater safely with no condemnation from fellow movie goers.

With the sensory movies in full swing, the duo began to look for a place to hold monthly support group meetings. Through the help of Jenny Lenczycki, Pastor Randy Sands, Kim Lohman and Ruth Reinicke, TASC found a home at The Free Methodist Church in Hillsboro. Jeff Eickhoff, co-owner of White and Associates, helped Sellers and the Drapers establish TASC as a 501(c)(3) non-profit, which enabled them to apply for funding from Montgomery County’s 708 Board to expand their outreach. While educators from throughout the county stepped in to volunteer their evenings to provide free childcare for the families that attend the monthly meetings.

The monthly support group meetings host guest speakers such as speech and occupational therapists, behavioral psychologists, educators, program directors and adults on the spectrum. Most importantly they are a place caregivers come together to share resources, offer advice and lend moral support.

“We need the advice of professionals, but at the end of the day other parents are your best resources. The group meetings are a safe place where you can come with your fears and concerns and not feel guilty or worry about being judged because the people around you are in it too,” Sellers stated. “It’s also about equipping families with knowledge. For example, your child is having trouble sleeping, or behavioral issues, or isn’t potty trained, the other parents might have suggestions on techniques you haven’t tried yet. They may not have the magic formula but sometimes you need to hear someone else say that they have been there too and that you aren’t doing anything wrong. The support group alleviates the feeling of being alone.”

Like most non-profit organizations, COVID-19 has thrown a curve-ball at TASC, but the group is confident that they and their families will bounce back. As vaccinations roll out and social-distancing guidelines are rolled back, the group hopes to begin meeting in person in the near future. Behind the scenes the TASC Board of Directors has been working on ways to expand their outreach and involve new families. They look to host guest lectures to provide further education for parents and teachers, giving educators an opportunity to attain continuing education credits locally and free of charge. They also have plans to offer training sessions for first responders and expand social outlets for families within the community. As TASC turns ten, its founders have discovered the impact of the group has spread beyond the families they serve and into the community that had supported their efforts throughout the years.

“When we started TASC our boys were nine, seven and six, and now they are entering into adulthood. Hillsboro High School’s transitional program placed Jack at IGA for work experience and they thought he did so well that they offered him a paid job. Members of the community stop me almost daily to tell me how happy it makes them to see him working at the grocery store and how much they love interacting with him. We have gotten that kind of feedback throughout both of our boys’ lives,” said Draper. “I don’t know what it looks like for them to be autistic adults out in the world, but I am very optimistic because of the community we live in. In the same way, we don’t know what the next ten years will look like for TASC, but I am positive our group will continue to grow with the community as well.”

Comments

No comments on this story | Please log in to comment by clicking here