Summertime is supposed to be our warmest season. So how come it sends a chill down the spines of so many of us in the autism community? Come on, admit it: The end of the traditional school year inspires dread as we look at a calendar full of downtime, because downtime is frowntime for so many of our kids.
Summer is also really stressful on us parents—many of us work full time, and have to find childcare coverage for the summer break. And for those of us who stay at home, there’s the stress of, “It’s only noon and we’ve already watched Sesame Street, built a Lego fort, taken a walk, practiced handwriting, had two meltdowns, run a load of laundry and cast a longing eye at the cocktail shaker!” Summer is hard for us—so what are our options?
EXTENDED SCHOOL YEAR SERVICES
You likely have Extended School Year Services in your district. This is summer programming for children who will regress in their individualized education plan (IEP) goals if they do not continue to receive services during the summer break. However, not every child with an IEP qualifies for ESY and even if they do some programs last for four weeks, others for six to eight. Even with an eight-week ESY program in our town, my girls return home every day at 1:00 pm and it’s a long stretch to bedtime.
I know parents who turn down ESY altogether, deciding that it is at best glorified babysitting, and at worst can make their child regress. In my experience, the quality and quantity of services provided swings wildly from district to district and state to state. Ten years ago, ESY for us meant an entirely new team of “subs” from other districts who didn’t know my kids at all, since few of the school year staff chose to work in the summer. Since then, our economy has changed the way many teachers and paraprofessionals view ESY, and the need for extra income means that a good portion of the school year staff tends to remain for ESY.
There are camps across the U.S. for kids with special needs, and that’s a good thing. Not all of them can accommodate special needs kids with autism, though, and that’s a bad thing. As with school, housing, and work programs, the differences of an autism diagnosis often don’t fit the mold at a camp that is accustomed to children with Down syndrome or cerebral palsy. Our kids’ communication, behavior and even toileting issues require autism specific training—and that’s not always available.
To find a camp in your area, ask other parents for personal recommendations and/or talk to your school district administrators and outside therapists. Your local speech therapy center might offer a summer camp, and YMCA camps often have special needs programming, as do Jewish Community Centers (JCCs) camps.
Once you find a program, visit the camp, and be honest with the personnel about your child’s autism so that you don’t end up with a camp that is unrealistic for your child. I know of a camp “for girls with autism” that only takes children with the mildest form of the disorder. I grit my teeth every time I read their happy, shiny brochure. Ask for references from other parents who’ve used the camp, and follow up with them.
If paying for camp is an issue, ask the camp director how other parents are meeting the cost, and get online to search “autism camp grants” in your area. An example of a local camp grant program is Florida’s Heal Foundation: founded in 2004 by Bobby and Leslie Weed, in collaboration with noted local pediatrician Julie Buckley (all are parents of daughters with autism), the foundation is dedicated to assisting individuals with ASDs living in the greater Jacksonville area (see Find Out More). Autism Speaks offers the Baker Summer Camp Scholarship Program, to which all camps in the U.S. that provide a summer program to financially disadvantaged individuals with autism are eligible to apply.
If your child is in the state Department of Disabilities, consult with your case manager for a camp line item in your budget. If the ESY program isn’t right for your child, you can ask the school district to pay for a summer camp in lieu of ESY. It’s a long shot (I know some of you may be laughing at the mere thought!), but I know families who’ve gotten their district to cover camp.
While many of us stick to “staycations” (which is often a euphemism for “we can’t afford to travel”), some families are able to take a real vacation every summer, or perhaps every few summers as budget allows.
You know how it is in the autism world—our own childhood memories of canoeing on Lake Michigan or hiking in the Grand Canyon might not be appropriate for our kids with autism. (Honey, the pack donkey just took off down the canyon trail with Mia, can we panic now?) But Mom and Dad deserve a break from all of the work at home too. Cooking three gluten-free meals a day and battening down the safety hatches in a rented condo or beach house counts as a real vacation… in Autismland. And there are locations that will not only accommodate children on the spectrum, they welcome them (see sidebars).
4 GREAT VACATION IDEAS
|1. TradeWindS Resort, St. Pete Beach, Florida The National Autism Association holds its yearly conference at this family owned full-service resort, where the staff are trained in how to provide hospitality to families who include a child on the spectrum. Even if you can’t make the November NAA conference, the TradeWinds is a terrific destination where you’re sure to enjoy sun, sand and the peace of mind that comes from having staff that accommodates the accommodations (so to speak) your child needs so you can all have a great vacation. Visit www.tradewindsresort.com.
2. Alumni Cruises For those brave enough to venture the open seas, there are options through a company called Alumni Cruises. Its website states: We’re dedicated to providing vacation and travel options for individuals and families living with special needs, including, but not limited to, autism, Asperger’s syndrome, Down syndrome, cerebral palsy and all cognitive, intellectual and developmental disabilities.” Visit www.alumnicruises.org
|3. Smugglers Notch, Vermont In the Northeast, many families enjoy the beauty of Vermont at Smugglers Notch ski resort. You can rent a condo and the fee includes adaptive camp for children on the spectrum. Mom and Dad can play golf, relax at the pool, hike and more while the child on the spectrum (no age limit!) has a fine time in a safe environment with trained staff. I’d like to smuggle my own family there for a week! Visit www.smuggs.com.
4. Morgan’s Wonderland, San Antonio, Texas While most theme parks offer a special pass that allows you to circumnavigate long lines, Morgan’s Wonderland was built from scratch for people with special needs. Imagine how nice it would be to simply “fit in” for the entire day with no stares from other park-goers! Visit www.morganswonderland.com.
GIVE YOURSELF A BREAK!
Summer vacation requires planning, research and usually some level of funding. But even if you just visit grandma and grandpa or friends with a cottage on a lake, try to make time for yourself to enjoy a bit of a break too. It’s summertime, and while the livin’ might not be easy for us, we can try to make it fun and enjoyable for all. Last one in the pool’s a rotten egg!