Updated Thu, Apr 24, 2014 11:14 am
By Noriko Kantake
April is Autism Awareness Month. The CDC just released the new number for autism prevalence: 1 in 68 children has autism. This is astonishing, given that just 10 years ago, it was 1 in 166. This means that society as a whole faces some great challenges: to provide appropriate early intervention; appropriate education; inclusive or autism-friendly recreation; job opportunities, or other services for those who cannot sustain work; a safe place to live; and—as a parent of a boy with autism, I cannot emphasize this enough—to provide respite for the caregivers.
All of these are in short supply in Appalachian Ohio. Despite Governor Kasich issuing a directive that mandates autism therapy coverage for state employees and businesses with fewer than 50 employees, there are very few service providers in this area. Also, when school officials face more immediate fiscal challenges, services for children with autism tend to go on the back burner. Athens County does a great job in providing job opportunities through organizations such as Personnel Plus, but for those whose autism is too severe to hold a job, services are limited, and the trend is to shut down developmental centers and intermediate care facilities—without providing alternatives.
Very few caregivers receive respite services. No matter how much the parents love the child(ren) with autism, it is simply unsustainable to provide care for children with severe autism 24/7. Often, school is the only respite the caregivers can get from caring for children with autism, or for that matter, any developmental disability.
This means summer break poses an extreme challenge for parents and caregivers of children with autism or any other developmental disabilities. A vicious cycle of the caregiver’s frustration and the child’s behavior problem begins, exhausting both. However, unfortunately, most summer camps available in Athens do not have capacity to accommodate such children.
That is what I and other parents wanted to change. Seven years ago, two parents, three school officials, and a service provider met to brainstorm something to offer during the exhausting summer break. With the support of the Athens Foundation, we started a day camp called Summer Fun for Special Kids, enrolling 17 children in 2008. Since then, we have offered this camp every year. It is a two-week day camp program from Monday through Friday for five hours a day. We offer crafts, music therapy, outdoor play, swimming almost every day, and a field trip to Nelsonville pool. The campers have a lot of fun and parents report they often talk about the camp and what they did at the camp. And, as I wrote above, this will give a meaningful amount of break—5 hours a day for 10 days! We are hoping this break will recharge parents/caregivers.
This year, the camp is scheduled for June 16 to 27. We charge tuition on a sliding scale from $75 to $200, depending on household income. The camp is overseen by a licensed special education teacher, a few educational aides, and volunteers. By the way, we are recruiting volunteers for the camp. If you are interested in volunteering for this camp, please contact firstname.lastname@example.org. We also still have openings for campers. If you are interested in enrolling your child with disabilities (your child needs to have an Individual Education Plan or IEP), please contact the same email address!
As parents, what we can do to improve families struggling with autism/developmental disabilities is limited. But we do what we can. Two advocacy groups had been active to help this population. One was the Appalachian Network for Developmental Disabilities, which was formerly the Arc of Athens County. Another was the Autism Society of Southeastern Ohio, which I founded. Recently, the two groups increased collaboration in every aspect, so it was only natural to merge into one group. In January 2013, the Appalachian Family Center for Autism and Disability Resources and Education (AF-CADRE) was formed, and it became a 501(c)3 non-profit organization in August 2013.
AF-CADRE’s biggest activity is of course Summer Fun for Special Kids, but we do other things to help families. We offer a face-to-face support group on 2nd Thursdays of the month, from 6:30 pm to 8:30 pm at Athens Community Center. We provide childcare by volunteers upon request. We also have two Facebook groups. One is “Appalachian Family Center for Autism and Disability Resources & Education”, an open group where we post upcoming events and trainings. The other is “AF-CADRE Parent Discussion Group,” a closed group limited only to parent or direct caregivers of individuals with autism or developmental disabilities. This closed group will give the opportunity for parents to be honest about their frustration, anger, and joy…because the group members “get it”.
AF-CADRE, like any organization, needs money to operate, especially to provide Summer Fun for Special Kids. We are listed as “Autism” in O’Bleness Race for a Reason (http://ouraceforareason.com/reasons/#Autism). Please support our effort by choosing “autism” as your reason to participate in the race or donate directly through the website, or to us. Information can be found on our website, www.af-cadre.org.
We are hoping to expand our operations as there is SO MUCH NEED in the area. We always welcome ideas and manpower to make the life of Appalachian families struggling with autism/developmental disabilities better.