It’s the time of year that most parents dread, especially parents of special needs children- Summer Break from school. June 6 was the last day of my sanity, when the kids were released from school for the summer. Roslynn was already set for summer since we signed her up for camp in Ephrata for 8 weeks. Greyson’s summer plans were a bit more complicated, due to many uncertainties with insurance and nursing care, as well as hours for his behavioral team. Roslynn was home for a full week before camp started, so we used that time to step back and take a break from the school year and we hung out. Greyson’s RBT had a surgical procedure set for the first full week of the summer, so she was out on medical leave for two weeks. Everything seemed to happen all at once, which was a huge stressor for Derek and I when we sat down to figure out the schedule. Once we finally arranged everything, I realized that I would have a few hours each day to work before I turned into “Mom the taxi driver” each afternoon.

Greyson’s began his Extended School Year (ESY) program in July and the limited schedule allows me to work/run errands if needed, but doesn’t provide much relief from the afternoon, when Greyson is at his most energetic part of the day. We get up around 6:15-6:30, he gets ready for school and then his nurse comes to the house at 7:20 to get on the bus with him at 7:30 for school. He gets home around 11:20, leaving me with about four hours to get Roz to camp and to hurry home to work from home. I ended up moving myself back to our home office, rather than the dining room table, because I needed a place to escape the chaos that occurs when Greyson gets off the bus. This has allowed me to lock myself in the office without Greyson hanging all over me to tend to his needs while I’m attempting to work. Sadly, the nurse who is with him only can stay at our house until 12:30pm, so most of my work days are ending around then.

I will say that I never thought I would miss naptime as much as I have since the school year ended. It’s often rare to see G take a nap in the afternoon anymore, which means no nap for mom. School really allowed Greyson to exhaust much of his energy, so not having that outlet to use his energy has left Derek and I awake almost every night with Greyson. He has been consistently waking up around 1-3 am, only allowing us to sleep for about 2-3 hours per night. Sometimes Derek and I get only about an hours worth. It’s been the hardest part of the summer thus far, but with his medical safety bed (hopefully) coming soon, we are optimistic that our sleepless nights will end eventually.

Because I have been working extra hours and have Greyson home with me all afternoon, I haven’t had much time to work on my side projects or many DIY projects at home. My goal for the summer was to finally fix up the holes in the walls around the house, caused by Greyson. His favorite thing to do is to make a hole in the wall and throw toys/objects inside the drywall as a “game”. Overall a harmless joke, except for when he began to hide the remotes to different appliances in these holes. I am beginning with the basement, and I have found three missing remotes thus far. I am hoping that once I finish patching the spots and repaint, he will stop making holes and find something better to do.

Another goal I had this summer was to push lots of protein and foods on Greyson. Summer is usually a good time for fresh fruits, so I have a bit more to work with when grocery shopping for Greyson. It’s almost a positive that I can get him to eat watermelon, grapes, corn and cucumbers, but I have incorporated peanut butter protein powder into his daily shakes, so he gets an extra boost during the day. Despite growing a bit since the start of 2023, he has managed to again a little weight since school ended, which has given me hope that we can continue the positive trend with food through the rest of summer. His favorite food is corn and we began introducing corn on the cob to him recently. This is how it went:

As the month of July continues, Greyson will continue his ESY program and will continue receiving nursing services while I am working. Roslynn has 4 more weeks of summer camp and then school will be back before we know it. I remind myself that someday I will look back on this chaotic time and miss the wild routine and ways we made breaks from school work. For now, I will survive by audiobooks and wine until August 22 rolls around.