The early part of June has traditionally been a happy time for me. In my years as a student and as a teacher, this part of the year has officially launched the end of the laborious school year with an all out sprint into the freedoms of summer. I often enter this time of year with high hopes for endless lazy summer days–picturing my self relaxed and with a drink in hand, lounging, swimming, and grilling. These images soon fade when I remember that the light feelings around summer are visions of my childhood and that my adult summer actually looks quite different–managing two over-achieving, active kids who need structure and stimulation to feel normal. I learned the valuable lesson of under-scheduling last summer when I naively thought no school and fewer activities meant fun and frolic. Last summer was filled with sleep issues for Charlotte and I, regressions in behavior, and a general boredom and restlessness that created an unsettled household. At the end of last August I wrote T.G.I.Fall.
This year I vowed to be more prepared. I have said my proper good-byes to what I want summer to be and have embraced the challenge that it currently is–less time for myself, more time keeping the kids busy, the same amount of running around, and warmer weather. The only problem is that I don’t do anything half-ass. I take on more than I can handle, and I don’t feel like I’m prepared unless I’m over prepared. I drive myself a bit crazy trying not to re-live past mistakes. All self-deprecation aside, experiencing regression with a special needs child is painful and traumatic. Progress is what fuels the work we do and often a lack of progress is frustration enough. Regression, particularly in sleep and behavior, is a sharp stick in the eye for reflection on what not to do. It puts me in a constant state of simultaneously planning and reflecting.
I often say that I feel neurotic as I spend one season preparing for the next season. I spent the spring getting the kids ready for summer–camps, therapy schedules, math workbooks, swimming lessons, and family vacations all weaved together in a delicate structure. I’ll spend the summer making sure they have everything they need for the school year, and in the Fall, I’ll be thinking of Halloween, Thanksgiving, Christmas and birthdays in the New Year. I can safely say that I’m searching for a feeling of security. I want to know that we’re prepared for any surprise or challenge. I’m a planner by nature and this coping skill helps me find a sense of order, but not necessarily a sense of health or peace.
In April of this year, I couldn’t help myself. I began a list of all of things that I thought I could do, not only to avoid Charlotte’s dysregulation during the summer transition, but further support her for the much-anticipated start of Kindergarten in the Fall. It was a daunting and ambitious list of appointments to schedule, supplements to try, and conversations to have. When I went to the recesses of my thoughts and expelled everything I thought would help her, I had to pull back and refocus. There was too much to do and not enough time. And when our plans for the final push of Operation: Kindergarten Readiness were in place, we received word that our medical provider was planning to stop covering Charlotte’s Occupational Therapy due to the tremendous progress she has made. I didn’t process this news well, as dealing with loss at a time of need certainly provokes a fight or flight mentality for me. With tremendous patience and mental effort, I pushed my anxiety aside and advocated for Charlotte at her OT evaluation, carefully explaining that OT was the only service that we had ever received and it was only with a supportive therapist and strong communication that we had been able to move Charlotte this far. I reminded her that we were effectively using OT as a catch-all for many of Charlotte’s issues–sensory issues, low tone, fatigue, and their accompanying behaviors. The reality of moving into a mainstream kindergarten with an Autism diagnosis and no services was not something I would accept.
With much discussion over whether or not the Autism diagnosis was still valid, we were able to reach a compromise to continue her services for 6 more months through the start of Kindergarten. I took a deep breath, gave myself a pat on the back, and continued checking items off of my to-do list. Then life took us a different direction. My purse was stolen out of my car, and Charlotte got a random case of pneumonia in the same week. I also got knocked down with a virus while dealing with auto insurance and the DMV. Thankfully, Charlotte bounced back quickly as I was humbly reminded that good medical care sometimes looks like a chest x-ray and an antibiotic if it makes your child smile again.
After surviving that week and getting back on track to finish the school year, I found myself at a loss. My to-do list overwhelmed me and all of the work I had done to prepare Charlotte was only spiraling into more negative thoughts. I searched for a sense of peace that I had been working so hard to find. When the Kindergarten principal looked me in the eye and said that her school would do whatever it needed to help Charlotte next year, all I could feel was distrust and anxiety–a sandwich of pinching of fears from the past and a bright, blinding light of the unknown toward the future.
And then I had a few days away. No children and two days of nothing-ness that looked like drinks at the swimming pool and a feeling of lightness and ease that I had not felt in some time. It felt like summer used to be. And should be. I wanted to bottle the feeling of light and ease and put it in my carry-on bag. I feared that I would lose it again when I got home, but when I sat in church on Sunday and couldn’t think of anything to pray for, I realized I had made it. I’m not sure how I got there, but I grabbed the elusive feeling of peace that I have been searching for. And then I prayed that it would last. I prayed for a break in the storm and many more light and easy days with my girls.
There are still several things left to do on my list. The summer is upon us as I’m just hours away from retrieving Charlotte from her last days of the safety and routine of preschool. The peace I feel in my heart is knowing that I’ve done all I can. But mostly importantly, it comes from knowing that we’ve learned how to live and learn.