Last month, a 15-year-old girl with autism and her family were kicked off a United Airlines flight because she cried over wanting a warm meal. The airlines initially refused to accommodate the family because only first class passengers are entitled to food service, even though the family offered to pay. The child was fine after finally receiving the meal, but the captain made an emergency landing and the family was escorted off the plane. The captain said he was "not comfortable flying on to Portland with [the girl] on the plane."
With summer vacation looming, this incident strikes fear into the hearts of parents of children with special needs. Air travel is risky. Driving a long distance may also be too challenging for some kids with special needs. And that's assuming the family can even afford to take a vacation. What about the rest of "summer vacation"? Like most families these days, parents who have kids with special needs have to work, so they struggle with how to fill the summer months with appropriate activities for their children.
Last summer, Ethan and Sofia were miserable. Both spent much of summer vacation acting out at home, having massive tantrums and refusing to do activities they enjoyed during the school year. Both kids were really unhappy campers.
Ethan, a boy with significant emotional problems, spent his summer in full-blown refusal mode. He realized that his "summer camp" was really a version of school, minus his familiar teachers and peers. There was not much playtime or recess, even on beautiful 80-degree days.
Sofia, a girl on the autistic spectrum, struggled at a summer camp that included children with special needs. Unlike Ethan, she had plenty of time for play. But with no predictable schedule and multiple transitions due to field trips, even her dedicated aide could not help her get into the rhythm of a program that was different every day. Like Ethan, she refused to comply with her summer plan.
So what is the answer for all of the Ethans and Sophias out there? Parents of children with special needs often find summer an endurance contest that tests their patience and taxes their children's ability to cope. We know that kids with special needs have, well, special needs. Three months of unstructured summer vacation are a disaster for children who thrive on consistency and need special educational support year round.
Summer school seems like an ideal solution expect for the following: Some kids like Ethan will only be happy in school if things are the same. Unfortunately, summer school is likely inconsistent in its staffing and location. In my community's public school system, children with the most significant special needs attend for 15 school days. The children may be assigned to teachers and aides who don't know them. By the time they adjust (if they do), it is over. And what is a parent to do with the other unfilled days of summer vacation?
It's no surprise many like Sophia's family turn to summer camp to provide that anchor their child needs, but here's the rub: As kids get older, the options are fewer. Their peers are going to overnight camps or can be left on their own. So finding a day camp that is affordable, provides an aide, and is structured enough is a real challenge.
This is by no means blaming the summer schools or camps. In the limited time they have, the summer school special education teachers and aides do their best to teach complicated kids they don't know all that well. By the time they figure out the learning styles and personalities of children like Ethan, the program will be over.
Summer camp directors who are open to including children with special needs try to find aides to enable these kids to participate. Most of their campers crave lots of field trips to pools, beaches, zoos, roller rinks, museums, bowling alleys, etc. Just not kids like Sofia. For many children with special needs, this whirlwind of activity is confusing and unsettling. What is supposed to be a fun summer can be torture for the child and the camp staff alike.
Unfortunately, solutions are few and obstacles abound. There is not enough money to pay the special education staff a year-round salary and keep schools open through the summer. And many staff members may not want to work in the summer, as their kids are not in school. Including children with complicated special needs in camp programs is also a huge challenge. Teens and college students with no special education training staff most of these programs.
School is ending soon but not all are celebrating. I'm sure all of the Ethans and Sofias and their parents will welcome the day when the school doors reopen. For them, the lazy, hazy days of summer are anything but.