It Can’t Be Summer!

BY KRISTIN DILLON, DISABILITY ADVOCATE & FOUNDER OF IT CAN’T ZERO, A COALITION FOR AUTISM EQUITY IN SCHOOL-BASED EXTRACURRICULAR PROGRAMS.

“Any plans this summer?” she asks. And because I don’t even know her, I opt for one of my artfully rehearsed therapistapproved responses that let me dodge this triggering question, when I’d much prefer a blunt and unrelatable “NO.” What she doesn’t know is that summer is the biggest, longest expression of what already crushes special needs families during the school year, with winter breaks, spring breaks, long weekends, half days, snow days, field days. In one Michigan school district, data showed over 875 extracurriculars were offered in the 2023-24 school year, including breaks. This is how many were adaptive or inclusive: zero. These activity deserts launched It Can’t Be Zero, a budding awareness and advocacy platform designed to bring schools, families and adaptive recreation orgs together, to provide equitable school-based opportunities. And now, it can’t be summer.

In my case, our summer hangs on whether mini-me qualifies for extended school year (ESY) - a.k.a. summer school that for some reason the Michigan Department of Education says we’re not allowed to call ‘summer school’. We’re hoping they offer the full-time one, a paltry blend of three-hour mornings, three days a week for six weeks. Then there’s the stacking of days and hours around it: Is there enough time, money, insurance to bind summer camps, therapies, and/or vacation? If ESY isn’t offered... how much advocating energy do I need to burn writing emails and making phone calls going to bat for supports, transportation, insurance verifications, grant applications, TSA Cares, Facebook Group polls, autism navigator services, Medicaid labyrinths and IEP check-ins, topped with a big red bow of data-driven decisions.

But wait there’s more! We’re stressing anyway because summer school ends the first week of August. And when August 1st falls on a Friday, the ESY groundhog sees its shadow, and we have another four weeks before school starts again.

ON A TUESDAY. FOLLOWING. LABOR. DAY....... ...........WEEKEND.

Think I sound like a walking anxiety attack now? Remind me to say that to the doctors around 4th of July, when my family’s collective sleep deprivation from the changes in routine has fully kicked in.

Now I’m an active parent in my local metro-Detroit community, and blessed with a tribe of savvy special needs mama bear friends. Summer is a puzzle we find ourselves in every year, and the formula remains the same: panic stirred with helpful ideas, hilarious experiences, trial, error, and a bit of luck. If you’re sweating summer right now, I'm your sherpa. We'll take it one topic at a time. Now one deep breath... exhale... and let’s walk through and effort? School won’t have the data they need to qualify until April. By then all the fun summer things will be waitlisted, and that’s still a sham plan. As my girl R. said “one time ESY offered us an hour of speech therapy per week, in two 30-minunte increments. It takes longer to shower and leave the house.”

We’re thinking: Register for ALLLL the summer camps now, and beg for a refundable deposit. ESY can squeeze around it, and if you don’t qualify--oh well, cuz your kiddo’s off to summer camp. Yay. There’s no way we’re letting you spend your summer stuck in the backyard with a bubble machine, blow-up pool, and sidewalk chalk, in between timekilling car washes, long drives, and a sun that doesn’t set until 9pm. We did that during covid, and we’re done.

WHAT ABOUT SUMMER CAMP

You’re thinking: Are there any in the district that keep my child connected to school peers? How about a special needs camp - do they have the staff ratios and allergen-free-ness we require? How many weeks does it run, and am I still high risk for that bubble machine backyard plan?

We’re thinking: These questions are vital, but they get you nowhere fast. Get down to brass tacks: Look for a local Miracle League, YMCA and Special Olympics. If you’re in metro Detroit, check out Friendship Circle, JCC, Team GUTS, FAR Therapeutic Arts & Recreation, and Camp SkyWild. Even local churches for the win: as Mama C. flexed, “one year, we had literally nothing. We found a local church offering a summer day camp. ‘Could my child with Down syndrome participate?’ What a surprise when they said yes! ‘We’ve never done that before, but let’s give it a try.’ It was so great, she went back every summer for six years.”

DO WE SCALE UP THERAPY HOURS

You’re thinking: During the school year, it’s really hard to tack on clinic-based therapies, especially when the demand for after-school hours is at a premium. Maybe we can use the summer to catch up, and do a day program with ABA, speech, OT and PT in a clinic.

We’re thinking: The allure of a fulltime clinic program sounds practical, but can you do that from an insurance perspective? From someone on the inside, “it’s so hard when this comes up. Insurance companies require clinical justification for authorizing therapy hours. So going from a few hours or no therapy during school year to full-time therapy in the summer sends blazing red flags. Every insurance is different, so do your homework and plan ahead, as staffing for one-on-one therapy is a hot commodity during the busy summer.” Another idea: check out therapies that don’t go through insurance, like recreation, music, or art therapy. LifeLab Kids offers a range, including a cool Tech Program that builds skills like playing digital piano and exer-gaming. Out-ofpocket cost worrying? See if the clinic can offer bulk discounts, credit or payment plans. If you want to look into behavioral or psychiatric therapies, Oakland County Mental Health Funding Assistance offers reimbursements up to $4000 for insurance co-pays, deductibles, and more.

WORKING PARENTS NEED TO WORK

You’re thinking: How will this new routine impact my work? Do I need to adjust my hours for drop-offs and pickups? Will I have to take vacation days all summer, just to stay sane? Am I eligible to take unpaid FMLA leave? We’re thinking: All the above.

But don’t forget to join the festivities, and make that a routine. Bowlero Lanes in Royal Oak, a certified autism center, offers sensory-friendly bowling every Wednesday from 4-6pm. Spend a rainy day at the new-ish Gather Grounds in Centerline, a cute coffee shop that offers job training and social opportunities for people with intellectual disabilities. Try a sunny day at Bower’s Farm, which hosts Diverse Learners Days for children ages 3-17.

DO WE VACATION OR STAYCATION

You’re thinking: Let’s stay within 2-3 hours of home, and drive somewhere for a night or two. Do we find a hotel or rent a house, and how long can we be away? If we fly somewhere, how far can we go and can we get help at the airport and on the plane?

We’re thinking: Travel has gotten pretty rad for our families, and social media, YouTube, and the web really is amazing for this. Sign up for a free, no-hassle webinar with Autism on the Seas. Call up TSA Cares to learn about their support services, or sign up for a flight simulation with Wings for Autism/Wings for All. The Detroit airport (DTW) has an accessibility team - email accessibility@wcaa.us and ask about their offerings, such as the very chill multi-sensory room and the free Sunflower program.

We’re also thinking: Maybe travel’s one thing too many this year, but you’re up for day adventures and research.

Check out special screenings at Emagine theatres, or brave an All Abilities Indoor Skydiving Night at iFly. Dream mode only this year? We got you. Apply for the America the Beautiful-National Parks Access Pass, a free lifetime pass for US citizens with permanent disabilities, and start pinning the years ahead.

WHAT ABOUT STAFF SHORTAGES

We need a 1:1 for some of these things (behavioral support, nurse, aide). Where do we find them?

And please don’t do the cringe-smile thing and say there’s no individualized staff, but parents can participate. What child over the age of four thinks it’s cool when mom or dad crashes their party.

Blank stare. Time seems to reveal Covid was when invaluable supporters were abducted by aliens, taken up in the Rapture, or changed careers. But if you have (or want to apply for) respite funds from Community Mental Health (CMH), you can work with a support coordinator on hiring respite services for summer camp. Pro tip: you may even be able to recruit your own background-checked special needs caregiver on care.com, or ask your favorite para-pros and clinic interns if they’re interested in a summer gig.

AND LAST BUT NOT LEAST

You’re definitely thinking: who’s paying for this! And I’m gushing to share some incredible camp scholarships, organizations, nonprofit charities and online funding directories that have our backs. Apply yesterday.

And when summer’s over, and school starts that Tuesday after Labor Day, know I’m right there with you, all over again. This time in full-throat advocacy mode with It Can’t Be Zero, a coalition of special needs parents working with school districts and adaptive recreation groups to slay the barriers our kids face accessing school-based programs. With enough of us coming together to shed light on these issues, we just might have the key to next summer.

Any plans this summer? Let’s discuss: kristin@itcantbezero.org