The good news Owen slept until five. He was calm and very happy that he would get to do his favorite things even though he was anxious about all of them. He knew he had to do his exercises and concentrate on doing them and not clothing or screaming. I told him that the only way we would meet his grandma or do anything else is if he did great with his behavior and music therapy so we were in a holding pattern. I woke up many times but at least slept more than I had the last few nights.
He wanted to know when he was going to school and he was beyond ready to get there. I told him he still had a few more hours. He said over and over how he was going to behave today and what he was going to do at his therapies. I prayed and prayed and prayed. The amount of tears I have shed over these moments is exhausting. The screams he shouts at me in between the moments make my heart ache for moments of calm. I shiver knowing that I never have any control over these situations. The only thing I can do is take him completely out of them but then how does he ever learn to deal with them the isolation would be incredible. My heart aches. He was off to school and I prayed for an incredible day for him.
Clothes and clothes and clothes. That is all he talked about. I picked him up from school and he immediately started giving me a hard time about what I was wearing. He wanted a dress and I was in camo pants. He wanted to go see his grandma and I immediately said no as he was yelling at me in the car. All his talk about not mentioning clothes was gone. He talked about everyone’s clothing and screamed at me while we were there. His therapist said he did fine with her. He was talking to himself some but was doing well with the exercises. We got home and I prayed he handled his vision therapy fine but I was anxious about it just the same.
He told me he wanted a pizza if he behaved. I told him he could have anything he wanted if he behaved. I was praying but it did not go according to plan. His doctor is beyond amazing though and supportive though. The screaming, gum, pants, and a little bit of her shoes were his focus. The yelling, licking, and tearing of her papers were how he spent most of the appointment. He was so calm once again as we left, wanting her to walk him to our car, and can’t wait to go back next week. I cannot figure out the emotions he is trying to connect to.
I ordered a pizza anyway hoping that it would make him calm. It worked. He was so happy about it. The night was filled with behaviors and then him trying to fix them. I cannot figure out how he is processing it all but I don’t know how to help him through it or how to make him understand that these behaviors are unacceptable. I am praying for answers.
He said, “Read to the horse.” I haven’t told him yet we are supposed to go this week. I pray for a calm rest of the week. I pray that we can both learn and grow through these moments. Nighttime was him standing next to my bed for thirty minutes repeating over and over he wanted to go to school tomorrow. After so long of trying to distract him and get him to focus on something else I stopped answering. The screaming began and I just lay there crying. I finally said that if he wanted to go sit in an empty parking lot all night and wait for his teacher we could do that. He decided to go to bed. I fell asleep crying.
I pray for a better tomorrow. I pray I figure out answers to how to calm him in these moments. And I pray that he makes these connections and moves forward quickly. I prayed a little more for a good night's sleep. Tomorrow I go for my second infusion out of eleven. I’m thankful that the finish line is in sight. The challenging days lead to great victories and I know I will see his amazing light shine through. Never give up hope for tomorrow. Smiles to all and donut daze!
He wanted to know when he was going to school and he was beyond ready to get there. I told him he still had a few more hours. He said over and over how he was going to behave today and what he was going to do at his therapies. I prayed and prayed and prayed. The amount of tears I have shed over these moments is exhausting. The screams he shouts at me in between the moments make my heart ache for moments of calm. I shiver knowing that I never have any control over these situations. The only thing I can do is take him completely out of them but then how does he ever learn to deal with them the isolation would be incredible. My heart aches. He was off to school and I prayed for an incredible day for him.
Clothes and clothes and clothes. That is all he talked about. I picked him up from school and he immediately started giving me a hard time about what I was wearing. He wanted a dress and I was in camo pants. He wanted to go see his grandma and I immediately said no as he was yelling at me in the car. All his talk about not mentioning clothes was gone. He talked about everyone’s clothing and screamed at me while we were there. His therapist said he did fine with her. He was talking to himself some but was doing well with the exercises. We got home and I prayed he handled his vision therapy fine but I was anxious about it just the same.
He told me he wanted a pizza if he behaved. I told him he could have anything he wanted if he behaved. I was praying but it did not go according to plan. His doctor is beyond amazing though and supportive though. The screaming, gum, pants, and a little bit of her shoes were his focus. The yelling, licking, and tearing of her papers were how he spent most of the appointment. He was so calm once again as we left, wanting her to walk him to our car, and can’t wait to go back next week. I cannot figure out the emotions he is trying to connect to.
I ordered a pizza anyway hoping that it would make him calm. It worked. He was so happy about it. The night was filled with behaviors and then him trying to fix them. I cannot figure out how he is processing it all but I don’t know how to help him through it or how to make him understand that these behaviors are unacceptable. I am praying for answers.
He said, “Read to the horse.” I haven’t told him yet we are supposed to go this week. I pray for a calm rest of the week. I pray that we can both learn and grow through these moments. Nighttime was him standing next to my bed for thirty minutes repeating over and over he wanted to go to school tomorrow. After so long of trying to distract him and get him to focus on something else I stopped answering. The screaming began and I just lay there crying. I finally said that if he wanted to go sit in an empty parking lot all night and wait for his teacher we could do that. He decided to go to bed. I fell asleep crying.
I pray for a better tomorrow. I pray I figure out answers to how to calm him in these moments. And I pray that he makes these connections and moves forward quickly. I prayed a little more for a good night's sleep. Tomorrow I go for my second infusion out of eleven. I’m thankful that the finish line is in sight. The challenging days lead to great victories and I know I will see his amazing light shine through. Never give up hope for tomorrow. Smiles to all and donut daze!
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