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Got Respite?

Caregivers of Kids with Autism Must Make Time for Themselves

March 2012

Respite is the fuel caregivers need to have the energy, compassion, and wits to care for a child with autism.

As Kristen McCurdy puts it, respite refreshes her so she can embrace her son to the fullest degree. McCurdy is an Indianapolis mom of three boys ages 12, 10 and 9. The youngest, Egan, has autism.

Since Egan's diagnosis at age 2, McCurdy has learned much about the disorder. She spent a lot of time learning about specialists, symptoms and treatments. She's also learned the feeling of isolation.

With two older children the stay-at-home-mom was used to typical activities like playdates and getting together with other moms.

"It's not something you can talk about to parents who don't have a kid going through this. Moms may ask if your kid is sleeping through the night. Mine's 9 and he sleeps now because we're medicating him. Is he eating solid foods? It's a struggle still at 9. That usual mommy talk stuff just didn't apply," she said.

For a little over a year now - thanks to individual insurance that covers applied behavior analysis (ABA) therapy - Egan has attended Little Star Center. There he is making progress toward goals like conversational speech. The center provides more than education and therapy for Egan though. Little Star Center also helps McCurdy and her husband learn how to better deal with Egan's meltdowns and tantrums as well as improve other quality of life issues like getting him to eat dinner with the family at the table. McCurdy says parent meetings also provide emotional support. All of this equals respite for McCurdy in one form or another.

Egan attends Little Star Center 40 hours a week. "It's year-round so my older boys had the opportunity this past summer to do things we couldn't really do before," she said. For the first time his big brothers went to the movies, played golf, and did other things they had not done as a family.

"I think for families who struggle with autism, one of the additional benefits to attending a center is you can focus on your career and focus on other siblings. You can focus on getting those things done that are very difficult to do when you have all the children, including the one with autism, in your home," said David Ide, co-founder and executive director of Cornerstone Autism Center.

He adds that because a child receiving ABA therapy is learning to deal more effectively with life, transitions, people, and different environments, the child is more independent which creates more peace in the day-to-day things.

Devon Sundberg, administrative director at Behavior Analysis Center for Autism (BACA), is on the same page. She explains that a good ABA program can increase leisure skills of children with autism by making activities like coloring positive experiences.

For instance, Sundberg said, "A large focus of our ABA programs is playing with toys appropriately as well as increasing age-appropriate leisure activities. When a child knows how to do five actions with a toy instead of one, that child may play with that toy for a longer period." In turn the parent has more time to tend to something other than managing the child.

Increasing a child's independence is significant, but time away is also important. McCurdy says finding time and sitters are not easy. She does tap into Noble of Indiana's respite program and calls upon a neighborhood sitter if Egan's older brothers are home to help facilitate language barriers.

She says mental clarity also comes from exercising and talking with other parents raising a child with autism. She's met friends through supports like Carmel Dads Club and Little Star Center.

Jane Grimes, marketing director for the Applied Behavior Center for Autism, knows support is valuable for parents. She says her center provides support to parents so they can get some downtime, reconnect with their spouse, go out to dinner, and more. They offer monthly parent night out events where parents can drop their children - those with autism and the siblings - for a couple of hours at the center so they can have a little time to use as they wish.

McCurdy says respite may be a necessary part of her role as caregiver, but so too is joy. She says Egan teaches her about compassion, patience, hope and finding joy in simple things. "We have all become better people by having Egan in our lives," she said.

Tags: In This Issue, Special Needs

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