I woke to a noise around five in the morning. I thought at first it was Owen but he was sound asleep. I went to the bathroom, laid back down, and promptly fell asleep for almost another hour. I got up and he was still asleep. I think his sleepless nights are catching up to him. I finally heard him stirring and I opened the curtain hanging in his doorway. He has a door but there are so many emotions and behaviors associated with doors in our house that I hung a blackout curtain in several of the doorways and that seemed to help him. Before I even opened the curtain he started talking about his robots. “Robots have teeth,” he said, and as soon as he saw me he said, “huggies one hug” and started to move towards the end of the bed, crawling out of the tent. I think he’s closer to wanting it completely off his bed but for now, he likes having the end open. This is when I told him he was going to see his grandma this morning. We talked about the days of the week and what day it was. We got ready and we got out the door. It had rained so the car was wet. Generally, he runs to the car and gets in but with the rain, he wouldn’t touch the car. He kept lifting his legs to make sure there were no raindrops on them. I was able to get him in and off to grandma’s we went. He talked about not going anywhere on Friday and what he was doing on all of the other days ahead. A few days ago he found a video showing someone driving down the streets near where we live and it was a very snowy day. He started talking about doing snow angels on the trip. He yelled out “yeehaw” about the cars we were passing. I left him with his grandma while I went to my appointment. When I picked him up, he decided he wanted to go to Grandma's on Friday. This was the complete opposite of what he had talked about the whole way there and not going anywhere on Friday. His grandma said that it was fine if he wanted to come on Friday but I wanted to make sure he understood that if he went on Friday, he may not get to go on Saturday. Going to grandma’s became his mantra throughout the day. I used to say I had nerves of spaghetti. I think it is more like angel hair. I was hoping to move up to linguine pasta. The repetitive behaviors keep you on edge because you never know when they will turn into a meltdown. We came home for a few hours before his vision therapy appointment and he was very calm except for his mantra of wanting to go to grandma's on Friday. I love when he uses phrases that he has learned from different videos or other people. “You beat the clock you are terrific,” he said. We were supposed to leave early to go to his appointment so that we could pick out glasses. Severe thunderstorms were coming through and so I wanted to make sure that we left before they got too bad. We were just getting ready to leave when the rain started. He heard it and he said, “the rains coming hear it.” We went out to the porch. He took one look at it and said, “nopedy nope” so we came back inside. When we got back inside, he said, “it helps the grass look at the grass grow.” I called the doctor’s office to let them know we were trying to get there but I was not sure if we would because of the rain and they completely understood. Thankfully the rain eased up and it was barely raining so we were able to leave. I helped him in the car because he would not open the door. He did well once we got there. She tried a different style lens on him that makes him look up and he loved them. She is also looking at some other specific exercises for him. My emotions run all over the map because it is so hard for him to understand that the rain won’t stop. We will always have rain. We are working with therapists to help him move forward but it’s not a simple process to change how he looks at rain. This is my baby. It is so incredibly hard to watch him go through these moments without answers because of rain. I’m thankful he was able to go to his appointment and he did amazing when we were there. In those moments that is where I see the growth, I pray every day for a new beginning. Sleep happened and he’s ready for the rest of his week. Your daily challenges will become your biggest victories. They are only a day away. Smiles to all and donut daze!
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