If you’ve ever done an obstacle course event like the Madison Mud Run, you may recall some obstacles that require teamwork. When you have sweat running down the small of your back, mud clinging to your shoes, breathless from running and mindful of each second that passes on the race clock – it’s a good idea to reach out to a teammate for a helping hand.
It’s a lot like living with autism, as it turns out. The challenge of autism is simply too big to face alone.
The Wisconsin chapter of Talk About Curing Autism (TACA) is part of a nationwide network of families whose lives have been affected by autism spectrum disorders. Founded in southern California in 2000, TACA seeks to be a parent-to-parent resource as families navigate the often bewildering and strenuous obstacles of autism diagnosis and treatments. Offering free information, support groups, and a mentorship program, TACA has grown to serve over 31,000 member families nationwide in 2012.
Local chapters often seek opportunities for fundraising, as well as opportunities to get the word out about TACA’s work. After participating in a shoe collection at a Milwaukee-area mud run as a fundraising effort, TACA Wisconsin members – many of whom are based in Madison – decided to try a local community event. This time, they decided to put together a team to participate in the Madison Mud Run.
At first, they focused on reaching out to the fitness community to sign up and run on behalf of families with autism. Gradually, and with encouragement, more and more parent members of TACA Wisconsin decided that they were willing to try the Madison Mud Run themselves. As word spread, they found support from others near and far; one team member, Tresa Gibson, is flying all the way from Calgary, Canada to participate. TACA Wisconsin members hope that the light-heartedness of the event may help families accomplish a critical activity: laughter. “You need to find a way to laugh, despite the hardships,” said Kate Whelan, Chapter Coordinator for TACA Wisconsin.
Focal Flame Photography writer Robyn Perrin recently caught up with Whelan to discuss the impact of autism on children and families in Wisconsin.
Focal Flame Photography: Could you tell us a little bit about the mission and work of TACA?
Kate Whelan / TACA Wisconsin: TACA is a lifeline to parents of children with autism. Particularly when you first receive your child's diagnosis, it can be absolutely devastating and it really helps to have a network of positive, experienced and knowledgeable parents help guide you to find the information you need. We are a national non-profit 501(c)(3) organization, which started as an Autism Diet meet-up group by our founder Lisa Ackerman in California. Initially, there were just 10 families, but TACA now serves over 31,000 families nationwide and that number continues to grow. The CDC's official statistics for autism are still 1 in 88 children, but a recent CDC survey found that number is more likely 1 in 50 school age children (1 in 31 boys). Autism now affects more children than those affected by AIDS, diabetes, and childhood cancer combined. If you do not know someone with autism, you probably soon will. TACA provides a community for parents to connect through meetings with speakers, a resource library, social events, and conferences. We also provide online live chat, parent mentors and medical scholarships for families in need. The biggest thing we offer is real support to families. It's that human connection that's so important.
FFP: As you've mentioned on the Team TACA web site and video, there are a lot of parallels between the perseverance required to live with autism, and how this challenge makes a 4.8-mi mud run seem so trivial by comparison. Are there particular stories of perseverance you'd like to highlight?
KW / TACA WI: Children with autism work very hard every day to communicate, to be heard, to process information, to overcome physical and social deficits. Most of our kids undergo years of intensive behavioral therapy (usually between 20 and 40 hours per week for 4 years and tapering off as needed - some will need therapy their entire lives). They also often need speech, occupational therapy, physical therapy, vision therapy, loads of other therapies, which means they're over-scheduled and really fatigued. Depending on the level of functioning of a child, it can be very difficult for families too. Studies have shown that parents of children with autism often suffer from PTSD due to the need to be ever-vigilant, particularly when they have children who might wander or who have explosive, unpredictable behaviors. We have many children in our TACA chapter who have made significant achievements in terms of overcoming obstacles in communication, making friends, and connecting with their families. Some have gone from a diagnosis of severe autism with a suggestion that parents look for an institution to high-functioning kids in school without much support. The most important thing is to always have hope. With hard work and perseverance and appropriate medical care that addresses each child's individual needs, a lot of kids can recover significantly.
FFP: What do you want the public to know about the work that TACA does?
KW / TACA WI: Having a child with autism can be incredibly isolating. If you know a family where there is a child with autism, please refer them to us. Once you find TACA, you're never alone. We will support you.
FFP: Are there team members or other volunteers you'd like to recognize in particular?
KW / TACA WI: Tresa Gibson is flying in from Calgary, Canada for the Mud Run. Tresa's son has recovered from autism and Lennox-Gestaut Syndrome through [ketogenic] diet. She's also an incredible artist and has auctioned off two of her paintings for TACA. Tresa has raised over $1,400 for TACAWisconsin and she doesn't even live here.
Kylie Van Dyke is 11 years old and running for her brother, Ryan.
Mary Tackett is a grandmother to a child with autism. This is her first mud run.
Margaret Adelmeyer is a personal trainer with a big heart. Margaret donated 10% of all earnings from April to TACA.
Courtney Kleist and Autumn Mazzulla are both therapists with Wisconsin Early Autism Project. They also work with my son, Luke.
FFP: Is there anything else you'd like to share about Team TACA at the Madison Mud Run?
KW / TACA WI: Often parents of special needs children do nothing for themselves, which can lead to all sorts of health problems, and also makes them prone to depression. Getting some physical activity should be a high priority for everyone, especially parents of children with challenges. Some of us will be caring for our children long after their peers have gone to college or the workforce, so it's important that we stay healthy. Finding time to do fun activities as a family and also as individuals is so important. At TACA, we have fun at our meetings, so it's an enjoyable social event and we look forward to seeing each other. As autism parents we often hear the saying "it's a marathon, not a sprint," meaning that you need to pace yourself, but sometimes it feels a bit more like a mud run. Sometimes it feels like you have to crawl through a mud pit and get hit with a fire hose before you feel like you have succeeded. Life with autism is full of ups and downs. We will often see progress followed by regression of skills, which can be frustrating. But, if you keep at it, things get better. Kids do recover. Autism is treatable.
FFP: Where can people go to get involved with TACA Wisconsin?
KW / TACA WI: TACA meets the second Tuesday of every month at the Wisconsin Integrative Hyperbaric Center at 6200 Nesbitt Rd in Fitchburg. To learn more about our meetings, visit the TACA Wisconsin web site.
Support Team TACA as they raise funds to help create educational resources and provide medical scholarships for families with autism. Donate today!
Follow Focal Flame Photography on Facebook, Twitter, or Google+ for more stories about ordinary people doing extraordinary things.