The glorious trend of sleep continued for one of us. Owen slept all night again. Now if I could sleep all night that would be a miracle. He was full of himself when he woke up and his saying “laughing like a boy” made him laugh even harder. He told me he “slept upper night” and he was a big boy.

He did not want to go anywhere during school or after school. He told me that we needed to go to Bob Evans though and listed all his people that he wanted to go but somehow staying home was still the alternative. He told me that we all need to follow directions. I thought that was funny since you know who doesn’t always follow directions.

We got ready and he was off to school and I was off to an appointment. He reminded me he was going to school and then staying home. We had a busy week last week full of appointments and plans so I think that is hard for him when he doesn’t always feel in control of his days even though he likes everything he does.

He got off the bus and immediately said he was not going to the Special Olympics. I told him it was over but he was stuck on that for a few minutes. I never know what connection he is thinking about and how that is connecting to the moment we are in. He was at least calm and I was thankful for that.

The dude came home with plans or at least talking about plans. He was very busy planning his big social event. He wanted to invite all his people to go to the park with him tomorrow. He listed everyone’s names with his added flair at the end of each one of them. Like his Grandma is “Grandma no more string pants” and his list included “she’s going to wear what she wants to wear,” “sometimes wears blue pants,” “wears blue shorts blue shoes,” “listens,” and “if he is cranky.” He went through all this and I knew most likely by the end of the day he would say he wanted to stay home. I think it is the overwhelming sensation of being overwhelmed.

In true O fashion I’m confused with what he wants to do tomorrow. His back and forth method of deciding and not deciding got me to figure out we are not going tomorrow to the park or anywhere unless he changes his mind again. He told me “The character in the story said no they are not going to the park.” He continued “They will all have to go together another day unless they go to the church park with the yellow slide that will shock you.” I guess there was a “the end” at that point. I found it very amusing how he phrased it all and basically wrote a book in this story format for his explanation. My little genius in action.

The closer it got to bed he was upset because he didn’t want to go to the park tomorrow but he kept telling me he didn’t want to go to the park tomorrow. I think it overwhelms him to think about it even though he wants to do everything so it makes it hard on him. He was calm about not going until I think he realized he wrote the story with an ending he wanted but wished he could go even though I think it was overwhelming for him to imagine.

His last thoughts on what he wanted to go do include two more dinner places after the library and seeing Santa and the fish. The dude has big plans now if we can find a way to get him to do some of them. I’m thankful for his progress and for how much he cares for all his people. He is becoming quite the conversationalist and I’m loving every minute of it. Rejoice in knowing that tomorrow is a brand new day. Let yesterday go and focus on the good stuff tomorrow. Smiles to all and donut daze!

Night two of all night long for Owen. Night a’million of not so much for me. He was adamant about not going to the field for the Special Olympics and I wasn’t going to make him. I figured if he said it that many times and could show me on Google Earth where he wasn’t going then he truly did not want to go. I figured it might be because it was too overstimulating but all that mattered to me was he did not want to go and that would mean he wouldn’t be happy if he did go.

He was in a good mood all morning but he was convinced he was ready to lick as many heads as possible. He couldn’t wait to get to school and tell them he was not going to the field. He also couldn’t wait to go to his therapies and I could tell he was thinking about the book he tore when he was at his vision therapy because he said he needs to “do exercises and no tear paper.” The morning went fast and he was off to school.

I picked him up from school and we were off to his music therapy. His therapist said he did a fantastic job and was able to share time with the other student. They worked on different activities and he handled it all well. I hoped this would translate to our next appointment. He seemed happy he didn’t go to the field.

When we got home he was stuck to me like glue. I truly hoped he followed through with what he said when we went to his vision appointment. He told me before we even left that he wanted to do the exercises so he could order a pizza for his reward. We got ready and we were off.

Well, he did better than last week. He wanted to be there but he wanted to do what he wanted to do. And that is to talk about the things he wants to do. At least he didn’t scream as much as last week. I guess he is working through emotions. When his appointment was over he walked with her out to the car holding her hand and talking to her. It is amazing how different he acts.

We got our pizza and headed home. At least he was calm when we got home. He wanted his bath and to go to school. The pizza made his day. He is so very smart. He saw the Cheerios’ box and he said, “Cheerios are the heart cereal” and he has every bit of my heart. Be thankful for the little things because they are truly what matter. Smiles to all and donut daze!

When your phone autocorrects “hello” to “zzz…” it might be onto something. However, with that being said let’s just go ahead and celebrate that one of us slept all night long. I somewhat got more sleep but it is always one thing or another that wakes me up and I always think I hear Owen. He was so happy he was going to get to go to church since he slept all night. I was thankful for that too.

He repeatedly told me it was his choice not to go to the Special Olympics tomorrow but he might go next year if his best friend goes. This boy was a’thinking. All day long he talked about his “best friend” that he never gets to see. I am hoping next year they will be back at the same school and they will be able to see each other. He wants him to do everything with him and today was one of those days that he wanted to see his best friend. He has a hard time looking at pictures but today he was able to pull up the pictures of them together last Halloween and he was so happy. This happened all day long.

He goes back to the dentist in November for another checkup and he said he would be cranky then so he has to see her. I tell him if he doesn’t feel good or his teeth hurt are times when he can go to the doctor or dentist unless it is for a checkup so now he tells me all the time he is cranky so he can go to see them. I’m thankful he loves going to them and doesn’t get upset when he has to go.

We got ready for church and he was so excited about going. He talked all about his friend and not going to the Special Olympics tomorrow. We had a nice time at church and I was excited to meet some new friends. After church, we picked up his requested lunch of Wendy’s since he didn’t want to eat the leftover roast beef and then headed home.

The afternoon and evening were nonstop talk from my sweet baby O. He kept telling me he was going to show me videos he knew I didn’t like. He has found every video I think about pulling teeth, eyeballs, and anything else a teenager thinks will be funny to watch his mom squirm. He also continued his talk about not going tomorrow, seeing his best friend, and how he should act at therapy. It would look at his friend’s picture and tell me he was sad and my heart hurts he can’t see him.

“You are laughing like a boy,” he said to me, laughing hard as he said it. I wasn’t even laughing which I guess made it even funnier to him. Bath time and bedtime quickly became one. His prayer tonight was “Thank you God for prayer. It answers. Amen.” I always tell him God answers prayers. I love his thought process. Let today be done and tomorrow you start a brand new day. Let it be beautiful and amazing just like you. Smiles to all and donut daze!

Owen couldn’t wait to see his grandma… exclamation point, exclamation point, exclamation point! He was in a great mood and wanted his day to go as planned. This started at two in the morning. I suppose I got a little more sleep than most nights since I fell asleep almost at the same time he did but it sure didn’t feel like it.

He wanted his milk and cereal on the table but he didn’t want to drink his milk or eat his cereal for several hours after I first put it there. I always end up putting his milk back in the refrigerator until he goes and gets it again. It seems like this is how it goes now.

He had a lot on his mind and he was ready to share it all. He said, “Fell in peach dress.” I asked him to repeat what he said because I was pretty sure I knew what he said but I couldn’t believe this was something he stored in his memory banks even though this was exactly the type of thing he would remember. He said it slower for me and it was exactly the same thing. He was telling me what happened about a month ago when I fell and hurt my foot. I was in my peach dress. He told me all the details about how I caught my foot and went down hurting my foot. He does not forget a thing and this will probably be a story he tells me twenty years from now.

For someone who wanted to go to his grandma’s house, he was almost as in slow motion as I was. He was sitting under his blanket and hadn’t moved in quite some time but he was awake just very quiet. I thought we were getting ready to go and he came to eat more breakfast and by this time it was his third round. We finally got going and we headed there.

The whole way there he told me how to go. I tried to distract him but he was on a mission. I dropped him off and I had a few errands to do. I went back to get him and I stayed there for a while. I told him we were getting ready to go and he told me to order food. He told me to get “roast beef, mashed potatoes and gravy, and green beans.” He has never ordered this before. I have given him bites of all of these things and none of them were ever his top choices. I was shocked by this but anytime he decides something like this I want to always give him the opportunity to have it. We first had another mission to do though.

Tonight they were having a dinner benefit for the horses so I told him we were going to pick up lasagna and then we would go get his roast beef. When we got there he heard the music and then told me he wanted to sing and dance. While we were waiting for our food he started dancing. I was so excited that he was dancing and it was his decision. I want to take him to one of the open mics that our friends go to so he can play his harmonica and sing with the guys. I think he would have so much fun.

Next, I ordered his dinner and we headed to the restaurant to get it. We headed home. I offered everything to him not thinking he would eat it all. He ate it all. He ate a little bit of the lasagna, a lot of the roast beef, about ten green beans, and only one bite of mashed potatoes. He loved the roast beef and I wondered when that happened. He said, “It tastes great.” He is a pretty good eater but hasn’t eaten a lot of beef besides cheeseburgers. I loved the way he ordered and actually ate it.

He was in a great mood all night. I’m exhausted but I’m thankful he had a good day. His laughter fills my heart with such joy and I love hearing him make his choices of what he wants. Big progress is being made. Never give up on the hope for tomorrow. Smiles to all and donut daze!

If you couldn’t have guessed we were up early again, Owen was very excited about our day and when he would get to go see the horses again. He wanted me to know that he can’t wait until he can have the horse at his birthday party at school next year. His teacher might have her hands full with this one. It makes me happy knowing how much he loved having his birthday party at school though.

He was quite full of himself this morning and once again full of lots of information. Even though he hasn’t read to the horses yet he has requested several books to take with him to show them. He told me which ones he wanted and then told me “Order it.” These were new books to me so I’m not sure how he knew about them but he was very specific. We may have found our summer activity. I’m so thrilled with the impact his time with the horses made on him so quickly.

He asked me if the horses wore blue pants. I told him he knew the answer to that and he laughed. I watched the video of him petting the horse over and over. It brought so much joy to my heart. I think as much as he liked petting the horse it was also comforting for him to watch its fur fall to the ground.

He knew we were going to see his counselor this morning and he was beyond excited. He couldn't wait to get there. He kept asking when we would get dressed but was calm about it. We got to the appointment and he was excited about everything. He let the whole waiting room know what his day held. He couldn’t wait for the nurse to come get him so he could get through that part to see the doctor. He was able to answer the doctor’s questions and he didn’t interrupt quite as many times as he usually does when we were talking. He was loud but not screaming. The doctor could see growth and thought he was making lots of progress.

We have one more session with him before he moves but Owen seemed to handle it well when he said he would get a new doctor. I asked him in the car to tell me what some of the things the doctor said about him that he liked and he answered that “he behaved” and he made “progress.” I was happy with his answers because I knew he was paying attention. I told him to remind me when he got to school that I needed to put his “school excuse” in his backpack. We got to school and he told me to put his “suitcase” in his backpack. I sure did.

When he got home he started planning all his days ahead. He told me once again that he was not going to the Special Olympics but there may be a little hitch in his giddy-up about not going. He said multiple times he was not going and then I could see the lightbulb go off that he might see his best friend there. It caused a pause and he asked me multiple times if he was going. I told him I didn’t know. He was then back on the “he was not going train.” The horses were then back as the big topic of conversation and he wanted to know when he was going back to see them.

He was calm all night. I was thankful for that. He was excited about the horses and he wanted to go to his grandma’s house tomorrow. I pray he sleeps tonight and is in a great mood tomorrow. He did his fake laugh when we were at the doctor’s office and that made my day. Let laughter fill your heart and be the melody for your day. Smiles to all and donut daze!

Life happens when you have something else planned. My mom always said that to me when I was younger and it floats through my head all the time. She still speaks very wise words. My plan was to sleep last night and between my body and Owen’s need to make sure I knew he was going to school today not much sleep was had. I realized yesterday that he is worried about school being almost out and he has no concrete summer plans because summer school is not happening like it should.

The good news about our early wake-up call was that he didn’t scream at me. He was relatively calm about the whole thing but needed more reassurance than my brain was even processing at the time. Coffee was my only line of defense. And it wasn’t getting in my body quick enough. Once we went through the fact that he was going to school he wanted to make sure he was riding the bus to school, I was picking him up for therapy, and then we were going to read to the “Dunbar middle horses.” He peppered in the question making sure he was also going to see his counselor in the morning, he could take his tablet, and use his tablet unless he was talking to him. This confirmation need lasted for several hours until he was off to school. The coffee truly was not transforming my brain quickly enough.

Having a child with the superpower of never forgetting a thing is amazing. Now that he can express more of his feelings, thoughts, and needs it is even more amazing because he is going way back in the vault of memories and asking about people, places, and things that he hasn’t seen in years. He remembers every tablet’s cover color he has ever had. He asks for them like they were there yesterday and not when he was three. He finds the houses of places we visited and parks we went to years ago, the list goes on and on. And then occasionally he will ask me a question about it in a language I don’t even recognize, while pulling up ringtones on his tablet so that he can ask YouTube for them. We got ready and he was off to school.

I picked him up from school and we were off to his therapy. He talked the whole way there about seeing the horses. He did better than okay with his therapy so that is good. His therapist told me they were able to do many exercises and he stayed calm even with several surprises like sharing the room with another child. We left there and he was so excited to go see the “Dunbar middle horse” as he keeps calling it.

We stayed for not quite an hour. He didn’t read to the horse but he was happy to be there. He loved petting the one named Lucy. She was so sweet with him. He loved rubbing her and watching the hair fall. It was very soothing for him. He told me we were going back tomorrow, Monday, Wednesday, Thursday, and Friday. I said we could probably go back a couple of times soon. He was so calm and even on the way home. He thoroughly enjoyed being there

When we got home he was walking around the house pointing at the walls, telling me “There are no more horses here time to get the horses.” He told me “go to grandma’s house on Saturday and then go see the horses.” It was amazing how many references to the horses he made all night.

He was off to bed and hopefully, he will sleep tonight. He had a lot on his mind and can’t wait to get his Friday started but I hoped it wasn’t until at least after five tomorrow. He couldn’t wait to go see his counselor, then school, more horse talk, and his weekend visit to grandma were all on his mind. He fell asleep quickly and I pray he rests. Today was an incredible gift. I’m so thankful his teacher invited us to go and it was a beautiful experience. His happiness was my pure joy. Be inspired by the world around you. Be in the moment and love what you do. Smiles to all and donut daze!

The early trend continued and I hadn’t even told Owen we were meeting his grandma so she could take him to school since I had an early appointment. He was up once again sometime before four wanting to start his day. This week has been full of appointments, activities, and changes and all of those affect his sleep. He was so happy once he found out that his grandma was taking him to school. He also couldn’t stop talking about how happy he was about going to the dentist.

He went to Google Earth and pulled up the field where they do the Special Olympics and said, “I don’t have to go there anymore.” I told him that he did not have to go to the event if he did not want to be told me “I’m a big boy stay at school.” I am beginning to think that not only is it that he wants to be at school for the routine but also because it is too much for him when he goes places and it is sensory overload. I have learned if he doesn’t want to do something there is no convincing him and this feels like something he is doing so that he feels more in control of situations and I can understand that.

We got ready and headed to meet his grandma. He had been talking to me all morning about how excited he was to meet his grandma, go to school, have Mommy pick him up, and go to the dentist. Plus, there was lots of horse talk. I’m so thankful he is excited about it and I’m praying it all translates to him having a wonderful time with the horses.

I picked him up from school and he was beyond excited to go to the dentist so she could count his teeth. He wanted to go a specific way so that we could drive by the high school he was not going to so he could see if the boy that lives in another state that he has never met was at the school that neither of them is going to. His brain never ceases to amaze me with what it comes up with.

We got to his appointment and they let us know the dentist was running behind. My little talking companion kept me very busy so the time passed quickly. He wanted me to find the elf on the jet ski in his game but every time I moved forward he pulled my hand off his game. It’s always it’s always interesting how he wants me to play but he doesn’t want me to do anything besides exactly the moves he wants me to do.

When we went back to see the dentist he was beyond thrilled. She is the most patient and kind person and truly cares. She includes him in all the steps and makes sure he knows what is happening. He talked to her the whole time and even told her about reading to the horses. She said his teeth looked amazing and there were no problems at all. He didn’t want to leave and sat there for quite some time before he would get up. He asked to go back in May when his teeth would be “cranky” again. I told him we didn’t have to come back until his next checkup in November unless his teeth didn’t feel good. He said again they would be cranky in May. He will do anything to get back to his people. I’m thankful he loves going and it isn’t hard for him when we are there, most of the time.

He wanted to go to Tudors for dinner but they were closed so we got Chick-fil-A and he was extremely happy when we got home. He ate all his dinner and then took his bath. After that, it went a little sideways with screaming because I didn’t go directly to my bed. Sometimes I feel like I’m the kid. He stopped screaming and went to bed. Sleep happened quickly and I pray that he sleeps past five. I set up his new clock but he isn’t looking at it yet to make sure what time it is. I pray he will soon. I’m thankful for happy teeth and them not being cranky. Celebrate your victories no matter how big or small, celebrate them all. Smiles to all and donut daze!

I fell asleep praying Owen would sleep all night but I think sleep has become an optional part of life. One o’clock he came to check if it was time to go to school, two o’clock he wanted to go read to the horses, and at four o’clock he decided that it was time for his tablet. These times do not reflect the times that I woke up as well. He was at least calm about all of it with no screaming.

He told me he was both happy and sad about his actions with his doctor yesterday. I could tell he was thinking about it all. He told me that he thought it was funny. I asked him if he thought screaming at people was funny and he then said, “it not funny it sad.” I asked him if he wanted to go back or take a break. He said, “Go do exercises.” I pray he means it.

It’s always interesting how our mornings go. He was beyond ready to get to school. We spent lots of time talking about yesterday, thinking about today, and wanting to know about the days ahead. We got dressed and it wasn’t long before he was off to school.

He came home with so much information flowing right out of him. He wanted to go read to a “Dunbar middle horse” combining several names together. He also said he was not interested in going to the Special Olympics. He would stay at school, he told me, because he doesn’t have to go since he is a big boy. He told me that the horse would go to South Charleston High School with him. I couldn’t keep up with everything he was telling me. He said he was going to decorate for Christmas so he could see “Night Santa” sooner.

I didn’t mention that we were going to see the horses on Thursday until he started telling me all this. Sometimes if I tell him things too soon it makes it harder on him. He said he wanted to show the horse how to ride a bike and he wanted to ride in a horse wagon. He was being extremely descriptive about everything. Then he told me he was going to invite it to his birthday party. I loved all the details. He wanted the horse to come indoors to sit with him at lunch. It was cracking me up with how many things he was saying and what he wanted to do. He kept going until he finally sat down to eat his snack.

He was very calm all night and I was not rocking any horses. He took a long bath and then came to sit with me in the “white bed” that now has had a pink blanket on it forever but I don’t think he will ever change the name. He told me numerous times he was going to behave tomorrow so he could go to dinner.

I am hoping sleep is in everyone’s future for tonight. I’m thankful he had a good day. My infusion went well today and I’m thankful I’m only feeling a little queasy from it. Tomorrow I go for my echogram and after school, Owen goes to the dentist for a checkup. Another busy day ahead. Each day is a gift. Through challenges, I learn how much sweeter our victories truly are. Let today be your guide for a beautiful tomorrow. Smiles to all and donut daze!

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!

The Easter parade came marching through some time by three. Lights blaring, feet pounding, and the screaming to the crowd of one. Owen was ready to celebrate Easter and celebrate it big. I’m not sure that I am doing the right thing but I feel like he is making progress with thinking through everything so I’m sticking to the plan of staying home since there was more screaming and he wasn’t settling since he woke up. I prayed he would find his calm. I know he wants his routine but I feel like he has got to make the connection to this screaming thing.

For hours he talked almost constantly and if he wasn’t talking to me he was walking through the house yelling to Siri or Alexa to translate something. He was a zombie even though he was wide awake. Plus there is no way I could drive with no sleep. I know someone would have picked us up but I couldn’t even think at that point to go to church.

He told me he wanted to go see the snails in the pool. “They taste good no they taste nasty don’t eat snails,” he said. He asked Siri to translate “Sure go to grandma’s house that’s fine” in all the languages. I can only imagine how many he knows how to speak or understands.

As the day went on there was no nap but he was slowing down. He almost had a meltdown over possibly or not possibly having an egg hunt tomorrow on the bus or not on the bus and at school or not at school. Once we did not settle that he moved on to waiting to go to Dairy Queen with his grandma after music tomorrow and after his dentist appointment on Wednesday. I told him I didn’t know because it depended on what was happening and his behavior tomorrow.

He randomly came to me throughout the day saying “Dear God” and then we had to pray for one of his people. I’m thankful for his incredible heart and how much he cares about his people. He loves fiercely.

He went through every tablet cover color he has ever had and what we had to do with them. He does not forget a thing. He will randomly pull up the text and ring sounds on his iPhone and play them. He thinks it’s hilarious but yet when my phone rings he will scream or talk the entire time I am trying to have a conversation. I’m constantly on pins and needles if I will get through a conversation without him screaming and now it’s one of his favorite things to listen to as long as no one is talking back.

He is ready to go see the Children’s Therapy Clinic’s “Night Santa” in November. He keeps asking how many months away it is until he sees him. We remained pretty calm for the rest of the day. I think exhaustion had hit both of us. I pray tonight is the night for sleep for everyone. He was ready for tomorrow and saying all the right things. He wants to make sure he does all his exercises at his therapies. Oh, how I pray for that to come true.

He has started reading my text messages while I’m typing them. It is wild hearing him read or try to read some of the words as I type.

I’ve tried switching his bedtime until later but it doesn’t matter if I keep him up later he will still wake up at all hours of the night. He doesn’t like going to bed late except when occasionally he does when he can’t settle. Tonight he could hardly keep his eyes open and it wasn’t long before he was asleep. I pray for sleep and a great day tomorrow. We have a full week ahead. He made sure he laughed for me and I was beyond thankful for his laughter. Let laughter fill your heart and bring you joy on the days you need it most. Happy Easter. Smiles to all and donut daze!