This is a post by J-Jaye Hurley, proud mother to Jackson (age 9) and Reese (age 2). Jackson was diagnosed at age 2 with severe ASD, in addition to numerous other medical conditions over the years. For the past 4 years, J-Jaye has served as Autism Speaks Southeast region Autism Response Team Coordinator.
Oh yes, fellow autism parents - It’s that time of year again!
Summertime is upon us, which means the school year is winding down. Instead of picturing lazy summer days and spontaneous late nights, I tend to picture meltdowns over too much downtime and changes in schedules wreaking havoc on my family! While it is true my son loves all things summer (he is counting down the days til our subdivision pool opens), the actual “transition to summer” presents the issues. Sure, summer breaks provide time off from the rapid pace of the school year; however, the lack of schedule, predictability and full day school programs can present as huge challenges for children on the spectrum and their families. While many children with autism attend a summer Extended School Year (ESY) program or summer camp, there are still “down times” between the end of the school year and the beginning of summer programs.
Here are some strategies we use in our house to help our family stay sane and happy during these times:
Use Visual Schedules
Even though the activities often change in the summer, Jackson still needs to have his visual reminders of what comes next, which helps him feel in more control over something that is new or different. Letting him know that his summer activities still follow a schedule gives him some reassurance and reduces meltdowns by knowing what he has to do later that day. We use a visual timer on our smart phones to let him know that he only has 5 or 10 more minutes to swing on his swing or play in the sprinkler. Jackson uses an AAC device to communicate which allows us to take pictures of new activities or places and quickly insert them into his schedule. Parents can also download images from the internet on their mobile phones when new places or changes occur as well.
Find Respite Care/Increase Therapy Time
Because of the down time in his schedule and with both parents working, it is important to keep his day busy whether it is with additional therapy sessions, community outings, special needs camp or respite care. We utilize ALL of the above during the summer down time. Working with his team on creative ways to keep him engaged are key and we start planning for his summer hours back before Spring Break even arrives! A bored Jackson means a Jackson who gets in trouble so I keep his calendar filled! Medicaid waivers often cover a certain amount of hours for respite care so I encourage you to reach out ASAP about adding additional summer hours. Some families get a PA (Prior Authorization) for additional therapy sessions to be covered since school is out.
Ask for Help
Any parent of a child on the spectrum knows that the end of the school year and summer down time requires careful planning and extra help. Reach out to local family members or friends to give you a break or to provide care during work hours. Talk to your other autism moms at a local support group to see if you can organize some play dates at local parks, pools or homes. Reach out to local autism organizations in your area to find community activities and events that you can participate in or send your child to as needed. You can also look for special needs babysitters utilizing online caregiving websites such as care.com. We have found many sitters over the years who were OT’s, SPED teachers, siblings, etc. who provided excellent child care during some of the summer down time.
Know that Every Day Won’t Be a “Perfect” Day
Jackson was diagnosed 8 years ago so we have been working on perfecting his summer calendar now for years. However, every summer has different challenges and some days are just harder than others, no matter how hard we plan ahead. We are currently facing the challenge of him wanting to overeat when he is bored which can lead to meltdowns and self-injurious behaviors. I try to use positive reinforcement when I can including fun summer items – like bubbles or time in the sprinkler. Sometimes popping bubbles and getting wet in the sprinkler helps me to “chill out” as well!