Today’s Lesson in Flexibility. Life on the Spectrum.

Today life served me up an important reminder; even the most concrete things need a margin of flexibility. We become so ingrained in our crazy schedule. We arrange all of the pieces of our life so that they fit just so. We push ourselves and our kiddos to move through the schedule and to check all of the boxes. We ask so much out of Grayson. We ask him to forgo the normal 4 year old experience to spend 25 hours a week in behavioral therapy. We set expectations and we push forward and then sometimes life stops us in our tracks. Life reminds us that we need to build flexibility into our schedule. We need it. And Grayson needs it.

Today Grammie picked Grayson up (just as scheduled) to go to camp at his Montessori school. We had a terrible night of sleep at the Sylfest house (not just as scheduled) and so Grayson got a later than usual start to his morning. He was excited to go to camp and when Grammie arrived they headed out the door. As Grammie’s car rolled into Lake Geneva Grayson grew increasingly worked up. Reiterating over and over that he did not want to go to camp. When he got to camp and saw his technician he started screaming “No”. Grammie, the teachers, the technicians, everyone tried to coax Grayson out of the car. But it just was not going to happen. So Grammie made the decision to take a break and head off to run a quick errand with Grayson. Grayson and Grammie called me a few minutes after leaving the school. My initial reaction was a learned reaction. My time on the spectrum with Grayson has taught me to know well the importance and benefits of our strict and over-the-top schedule.  I immediately thought of the schedule. I thought about losing 3 hours of therapy for the week. I thought about rearranging the care providers since the nanny was already in route to the beach with Rowan. I thought about all of the perfectly organized pieces of the schedule and I saw them completely falling apart. Then I realized that I needed a break. I turned my brain off long enough to realize that Grayson has not had an honest to goodness true “day off” since sometime in the spring. We always take Sundays off as a family, but on Sundays we are on the go non-stop. So while he may not be in therapy he is still following the schedule that James and I set. I called our technician and she spoke with our case manager. We were all in agreement; Grayson needed a day off. Grayson DESERVED a day off.

Today Grayson did whatever he wanted to do. In the morning he ran errands with Grammie. Then he went swimming at his great grandpa’s house. After swimming he had lunch with Grammie. During Rowan’s rest time the nanny took Grayson to the beach. (She was there in the morning with Rowan. It just so happens to be her birthday and I think what a gift it must have been for her to have that “free time” at the beach with Grayson). Today, there was a schedule. It was color coordinated and orchestrated to perfection. But today, we threw the schedule out. Today, Grayson just got to be 4. No one expected anything of him. No one took data on his goal achievement. There were no timers. There were no “hall pass” cards. Today, Grayson just got to be Grayson.

I needed this reminder. Especially right now on the cusp of our even-more-insane fall schedule. I know that we need to have schedules. I know that the insurance company regulates the number of hours of therapy we need to achieve in the week. I know that the work we are doing in therapy is important. But I also know that sometimes we all just need a day off. It was silly of me to forget that Grayson, just like anyone else, would need a day off.

Thank you Grammie and Christi for having the most wonderful day off with my baby boy! And thank you life for the reminder that every once in a while it is ok to throw the schedule out the window!

JS

 

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