School bells ring on the last day of school, and all children rejoice, while most working parents cringe. I’m a working mama and an autism mama, and like my Warrior Boy, I love a good routine. I get in the swing of things, and getting out of it makes me all twitchy inside. Summer typically doesn’t constitute too many changes, other than good ones: we travel more, play more, and celebrate more, with four family birthdays packed into one summer month, among other things. All in all, it’s usually not a bad deal. But then, my Warrior Boy usually attends ESY.
ESY= Extended School Year. It means that Warrior Boy gets to go to school for at least a few days per week, for most of the summer. It means he doesn’t completely lose his routine, his good behaviors, or his mind. He hasn’t missed a summer since his first year of school, when our Christmas present was finally getting him back to being himself. It was so awful, that the school made sure he didn’t miss another year. But as some of you may remember, we are with a new system this year.
When the new school system denied Warrior Boy his ESY, I cringed. I asked a lot of questions. I offered a lot of resistance. Much to my disappointment, I continued to receive the same answers: “We have concluded that it will take no more than six weeks to get him back into his routine” and “We don’t go by what the other school did” and “Our responsibility is what happens at school, not what goes on at home”. I tried to remain positive, thinking I would be able to find something else, but by the time I realized that they really believed all that junk, every available program was either full or affiliated with the school system.
Today marks the end of the seventh week that Warrior Boy has gone to work with me each day. Luckily my career involves working with individuals with special needs, or this wouldn’t be possible. Still and yet, it has been a slow, downward spiral. Sadly, I have watch my Warrior struggle, as we have battled that dreaded r-word, “regression”. I feel angry, frustrated, stressed out and sad. My boy, who is typically sweet-spirited and energetic, has become aggressive and uncontrollably hyper. He’s been distracted, easily triggered, and impossible to redirect. He spends most of his day shrieking, grunting, stomping, and throwing toys. Once almost meltdown-free, he now has one at least once per day, and we have to take frequent sensory breaks. These things don’t just happen when he goes with me to work; this also affects his home behavior and his relationship to his brother and sister.
I am heartbroken for him. He, along with his village of teachers, therapists, select family members, and dear friends, have worked unimaginably hard to get to where we were earlier in the year. And in working with autism, it is well-known among professionals that the focus should not be on one area or another, but rather, the whole child. And that focus should always strive to be consistent. So I would argue that the school’s decision for him to be excluded this summer, because they are only responsible for what happens at school, is fallacy at best. All the parts of his team have to work together and work consistently in all areas, or we fail. We fail him. And we fail others like him if it doesn’t improve.
So this season, which for many was sun and fun and good times, has mostly been stress and anxiety for me. And for my Warrior, it has been a withdrawal into a dark space – familiar, but unexpected. And unnecesary, if you ask me. Which is part of why the good moments haven’t been as good as the hard ones have been hard. And my sweet anticipation of vacation has turned to nervous anticipation of the coming school year. No matter what it brings, we will face it together – with an emphatic one-finger wave to this summer.