SIX AM! Owen slept until six! I woke up more times than I can count last night for more reasons than I can explain. He was in a great mood and wanted me to know he couldn’t wait to see his best friend at his school in August. He told me he was going to look for his car and he couldn’t wait to eat lunch with him. I love that he was able to share this all with me.

He was also back to plotting his time to see all his people and when he could go with them to Bob Evans. He told me again he wanted to see his doctor because he missed her. This dude loves his people fiercely and it makes my heart happy to know he cares for so many people. All morning long he was talking about his best friend. The smile that washes over his face when he talks about him is amazing.

We did some more exercises working on his fine motor skills and then we got ready for school. Before he left he played his drum. I left it sitting on the couch and he was playing it with the sticks. When he first woke up he went straight for it and played a few before he went to get his tablet. He loves it. We went out to wait for the bus and he talked about seeing his teacher. He did one more check with me to see if I knew who would be his bus aide next school year and then he ran to get on the bus.

Every little thing can be something. When the bus brought him home they came the opposite way they normally come so he was not thrilled. He wanted to go after the bus in his wagon that we don’t have anymore because he was too big for it. He told me he wanted to tell his counselor about the bus going to wrong way. He also asked when he was going to dinner with everyone. His social calendar is interesting. And then he wanted to make sure they hadn’t canceled high school like they did summer school and that his friend would still be going to his school next year. It was a busy first hour of him being home.

My brain can’t process it all sometimes. The phone has always been one of those up and down challenges with him that produces a lot of screaming. Since my cancer diagnosis, I have gotten tons of phone calls and tried to answer them all because of my appointments and doctors calling. I answered a phone call and that sent him through the roof. It took him quite a while to calm down from it.

He asked me to take him to get a pizza and then to Burger King. I said do you want to go and he said, “No.” I had an event that I was supposed to be going to at the cancer center but between him being upset and my stomach I decided not to go. I asked him if he wanted to go meet people to see what he would say. He once again said, “No.” I thought I could take him with me for a few minutes and go but I knew it would be hard to take him at this point. My mom was going to watch him for me but he was not budging about going anywhere.

He was attached at my hip most of the night and sat there holding my hand while he played on his tablet asking me questions. The night stayed pretty quiet after that. I pray tonight is another night that I can say he slept all night or at least I can say I slept most of the night. I’m thankful even on the rollercoastery days that he can now express more of his feelings and his needs. Let your heart be happy and share your joy with the world. Smiles to all and donut daze!

So close yet so far away. I tried the same tactic as yesterday and today’s answer was to go back to screaming. I’m thinking about getting a vault for his devices that can’t be opened until five in the morning. It’s always interesting. He is very ready for his day as he knows it. I wish the screaming would be taken off rotation.

He only had 30 minutes to go before it was 5 o’clock and he refused to go back to bed. The screaming is the hardest part and I knew he had a busy day ahead. He could hardly keep his eyes open yet he wanted to stay awake to look at his tablet. I hope that he can reflect on what we’ve talked about and tomorrow he will not scream at me if he wakes up early again.

We got ready and went out to wait for the bus. I didn’t tell him that his grandma was going to pick him up for his music therapy in case any of our plans had to change. I knew he would be thrilled, even though he would question why I didn’t tell him. My mom said he did great at therapy and while he was with her.

I met my mom and Owen at his vision therapy so she could drop him off to me. He did so much better today. He still talked about the gum but no screaming, no licking, or anything like that, just a lot of gum talk. He was able to complete multiple exercises. The funniest thing was his motivation. The only way he would do some of his exercises was if I promised him I would take him to see his doctor. He was happy as a lark and not sick but wanted to tell her he felt better and he missed her. He was much better. I’m beyond thankful for that. We picked up dinner on the way home and he was eating that.

My mom sent us both tongue drums and I showed them to him after he ate. He played it with and without the sticks. He was very excited about it and played it very enthusiastically. We will enjoy them and I know play them together.

It was off to bedtime after his bath, and I’m thankful for a much better day, even though it started a little rocky. I can see so much progress and growth in him. I’m glad that he’s able to express himself more and that in the long run will help him with making even more progress. His smile makes me smile. Look for the joy, enjoy the moments that make you smile, and know that you can change the world. Smiles to all and donut daze!

Sleep happened for the most part. I always wake up at least once during the night. It was a little rocky to get Owen to bed but not bad. He woke up at 4:40 and came to me to get his tablet. I told him that it was not five o’clock and if he wanted to go to church today he had to leave his tablet and go back to bed until the clock said five zero zero. He screamed and I said one more scream and no church. He put his tablet down, stayed in bed until after five, and then came back to me to get his tablet.

I told him I needed a few more minutes before I got up. It was about twenty minutes before he came back to ask for milk and I was getting up at that point. Huge progress! I’m so thankful he was able to gain control and go back to his room. I know twenty minutes to him is an eternity. It felt like a huge victory. I was glad it was only the twenty minutes but for him to even do that was incredible.

He had two things on his mind going to church and then going to grandma’s house. That was his chant for the morning. He came to me every few minutes asking when we were going to church and if I had texted his grandma to see if he could come to her house. I already knew he could but I wanted him to be able to understand the process of needing to find out.

He wanted to have a campfire at grandma’s house but I told him I wasn’t sure because the wood might be and he said, “Wet” before I could even finish. Then he said, “Text her so I can go to grandma’s house.” I went through what time I could message her since it was very early. After a while, I was finally able to tell him he could go. He was so happy.

We got ready for church and we headed out the door. He was so happy to be getting his day started. The whole way there he talked about going to church, wishing his best friend could come, talking about seeing him at his school in August, and going to grandma’s house. He thoroughly enjoyed church and was ready to get to his grandma‘s.

On the way to his grandma‘s house, he kept talking about different behaviors like screaming and licking people’s heads. I told him that we should start talking about good behaviors instead of behaviors that kept him from going to his grandma‘s house yesterday. I asked him if he could tell me what good behaviors were. He said, “Listening, sleeping till five, and being kind.” I was very happy with the behaviors he was listing.

I dropped him off and he stayed for a couple of hours. They were even able to have a campfire. When I came back to get him, we played on the computer for a little while, and then my mom and I sat and talked. The rain kept us there a little bit longer and then we headed home. He did amazing in the car and was very calm. He ate the sausage dog she gave him on the way and said, “More sausage dog please” about halfway home. He was very calm all the way home.

We ate some more dinner and then he sat next to me showing me another daycare he went to. It is amazing how many places he can find that he went to when he was little. We had a great rest of our night and I was very thankful for his behavior all day. I hope that he sleeps tonight and has a great Monday. His amazing smile and laughter made my day. Always look for the silver lining and let it shine through. Smiles to all and donut daze!

Owen was walking around with his eyes more than half closed. I guess that is what happens when you’ve been up all night. It feels like he was up before he even went to bed. Somewhere by one, he was at my bedside screaming after turning on all the lights. I told him it was still nighttime and nowhere near five o’clock in the morning when he could get up for the day. He went back to bed for maybe thirty minutes. Then it was all that and more until four when I gave up thinking he would be calm. He was finally calm for a few minutes when I got up but we were both beyond exhausted.

I told him that today we were staying home. The screaming is not something I am going to tolerate. He wanted to go to grandma’s house but I’m trying to get him to understand that we have to respect each other and he can’t scream at me because he wants to go somewhere in the middle of the night. The screaming then started again and I told him this was exactly why we couldn’t go anywhere because he was not going to scream at his grandma either, plus I couldn’t drive with no sleep. He walked away asking his tablet to translate “Grandma’s house ok fine mommy in Arabic” the words he had been screaming at me all night. I guess he will now start screaming it at me in other languages.

I think he gets so worked up about what he wants that he can’t let himself sleep. I really don’t know. He told me he wanted to watch a movie with me but it never happened. I had a feeling if he would have with me for five minutes we both could have napped.

The chant became “I want to go to grandma’s house Sunday.” The screaming for Saturday had ended, thankfully. He had almost fallen asleep in my arms numerous times but woke himself back up.
My mom got us food so I didn’t have to worry about cooking. We ordered pot roast and chicken. It came with mashed potatoes, macaroni and cheese, green beans, and carrots. He ate two baby carrots and wasn’t thrilled but ate them. I gave him potatoes without gravy and he is eating everything else, saying the name of the food as he ate it.

The amount of things the dude comes up with to tell his story is wild. He told me he was going to burp at church tomorrow so he would be sick and get to see his doctor on Monday. I told him earlier that the word he was trying to read was “ridiculous” like everything was ridiculous so he kept saying “Everything is ridiculous.” He watched a video where everything was broken and then he told me all the things he was going to break in the “building” as he called it meaning our house. He walked over to the wall, pulled the cover to the air conditioner control off, and threw it on the ground. We are having some interesting teenage, no sleep moments.

The day ended with more screams about me taking him to church tomorrow and then going to grandma’s house but he wouldn’t go to bed. He kept coming to my room and telling me
“Little deep breaths.” I told him that he had to go to sleep in order to do anything tomorrow. He took off running and fell when he turned the corner to his room. I prayed that he was OK. He said he hit his knee. I looked at his knee but didn’t see anything and he said, “One hug please.” I gave him a big hug. He finally went to his bedroom and stayed in bed. I pray for rest and no more screaming tonight.

I know he is getting anxious about school being out in a month. He is very upset that he is not going to summer school and I know that has a lot to do with him clinging to his schedule. I don’t know how else to help him through these moments besides to reassure him that he will be going back to school in August.

My momma’s heart hurts when he has such hard days. I pray that we sleep so he can go to church tomorrow. I know that will help his routine. Through the hard moments, there were still victories. When I try to explain how we have to work together through everything he is trying to express his feelings more and engage in conversations. He will ask me the questions I try to get him to respond to like “What is your favorite color?” I believe in the hope for tomorrow. Let your victories outshine your doubts. Smiles to all and donut daze!

Too much excitement wins again. He was up by two, talking to me about his tablet, and what his day was to hold. I can only guess what woke him up last night but at least he let me mostly go back to sleep. I had a feeling he was up because he was getting to see two of our advisors when he got home from school and I’m sure he was still excited about seeing his best friend yesterday. Plus, the excitement of school alone makes him happy so I’m sure it was partly that as well.

He was in a great mood all morning. He told me he couldn’t wait to see his best friend again in August. I’m so happy he got to see him yesterday. It made us both very happy. He was ready to get to school so he could come home and see his people. He also couldn’t wait until he got home so he could see them and then tell them to leave. He has a hard time when people are at our house because it throws his schedule off.

We got ready and went out to wait for the bus. “Shorts on October,” he said while not facing the steps correctly and telling me that he wanted to wear shorts now but also in October. He never pays attention to the fact that he is right at the top of the steps and so close to the edge. I remind him to move over or turn around. He did both and then went right back to the same spot to talk about shorts again. I saw on the app his bus was coming so I told him to go on down the steps. It wasn’t long and he was off to school.

Our advisors came before he got home from school. We went over the necessary paperwork and questions. He came home when we were almost done and he was so excited to see them. He goes through all his questions, comments, and suggestions of when they should leave. He remembers the first time he met them and what they were wearing. He truly never forgets a thing. Both could see a lot of progress from him and I was happy about that. He was happy when they left so he could watch them leave and then change.

Whenever I drop something he says “Pay attention.” I wish I would pay attention sometimes. “When the siren comes we have to go down the stairs,” he randomly said to me. He is well aware of the storms now and the steps we have to take for our safety. They practice a lot with him at school and we go over what we have to do at home. He talked a lot about his weekend and what else he wanted to do. He wants to go see the horses again so hopefully we will go this week.

He was very tired. I guess two in the morning was catching up to him. He was lying on me and saying that the countdown would start soon for bedtime. At that point, he still had three hours to go.

He asked YouTube to find “speak bump” instead of speed bump I thought but then he continued “Put air in my tire.” It wasn’t a “speed bump” he wanted a “spike bump” so he could watch tires flatten over the spike strip. The adventures with this one are going to be strong. He then was watching a video where a baby was watching a tablet with his mom and he said, “Baby tablets take baby’s tablet.” I told him he couldn’t take that tablet from the baby on his tablet. He then told me he was going to take “Uncle Wichard’s tablet.” I told him he knew he couldn’t have his tablet either. I still look at the pictures my brother had on it. I can’t even reset it to use for myself.

He had gotten up a couple of times but we pretty much stayed attached at the hip for hours. He already told me to “order roast beef for me” wanting it for tomorrow after he went to grandma’s house. He didn’t mention the mashed potatoes and gravy or green beans this time. He didn’t want the potatoes but ate the green beans so I’ll try maybe French fries for him this week. It’s so funny how he wanted me to order that last week and now requesting it again.

He knows that he has to sleep until five so he can go to grandma’s house and that he has to look at his clock to see what time it is. He’s had it almost a couple weeks now and he hasn’t thrown in the trash or even unplugged it once so that is huge progress. This is the longest a clock has ever lasted in his room. Maybe tonight he will sleep. I’m incredibly blessed for the progress he has made and the smiles he gives me. Never give up on the hope for tomorrow. One little step can change your entire life. Let tomorrow be that step forward. Smiles to all and donut daze!

I’m not sure what was on his mind this morning but he was ready to share it with me very early. He was excited about going to school and therapy so maybe that was what was on his mind. At least he was happy about everything.

We had a busy morning of talking about everything we would be doing over the next seven months. He went through the closer days, moved onto no summer school, then to whether he would see his teacher this summer, to getting to see his best friend in August but hopefully sooner, then about the Christmas lights being put up and the flags taken down on the bridge, to see night Santa, and finally seeing fish Santa. This does not include all the random babysitters and other people that he is missing from his life now. He kept showing me pictures of his best friend when we saw him at Halloween last year. And of course, the blue pants talk.

We got ready for the bus and it was lots of talk about what his day would hold. It wasn’t long before the bus came to get him and off he went to school. I had a follow-up radiation appointment to go to before I picked him up from school for his therapy. Thankfully, everything looked good and I was released from the radiation department. I went to get Owen and I got to hear his exciting news. He got to see his best friend at school today because it was moving-up day for the new kids entering middle school.

“My best frand came to my middle school,” he said. He went on and on about when he would get to see his friend again and that he would be in school with him in August. He was so happy. He talked about his best friend all the way to his therapy sessions.

He did pretty good His therapist said. He was still focused on her clothing but was able to do the exercises. He did tell her about seeing his best friend as well. He was pretty calm on the way home but talked about his day and all that it meant to him. I got him his requested Burger King. He was beyond happy about seeing his friend and he talked about it all during dinner.

On the way home he said, “Dear God I want to see a lion.” I truly do not know where it came from but maybe we will get to see one at a zoo someday. The night was filled with excitement reminiscing about his day and I’m hoping that it doesn’t keep him from sleeping all night. He is very excited about August. My happiness came from seeing his joy and knowing that he got to see his best friend. Find your happiness and savor the moments. Smiles to all and donut daze!

Back to not sleeping that quickly. I think too many choices were on his mind. He said go to school, come home, eat a snack, and go to the depot. In other words, he wants to do something but he can’t handle it all. Or so I think. Even though he was up early at least he let me go back to sleep so I slept another couple hours.

He also knew that I had to take him to school this morning because I had another early appointment. If I hadn’t told him until this morning, he may have slept better but instead, I told him last night because I wanted to prepare him. I’m never sure how to handle these situations because sometimes he handles it better if I tell him and other times he handles it better if I don’t until It’s actually happening. I got him to school and I was off to my appointment.

When he got home I could tell the field was on his mind. He did not want to go to the Special Olympics but said he would consider going to it “next ear.” I pointed to my ear and said, “Next ear” and then my other ear followed by my nose, mouth, and eyes saying each as I went along. He looked at me and said, “I don’t have to go to the field until next year.” I told him that was correct and he could make that choice next year but he might want to go if his best friend goes. He smiled and went to eat his snack. He said, he wanted to go to McDonald’s but then quickly changed and that was that.

I think he is having a hard time processing going anywhere outside of the exact things he normally does in a week because it is out of routine. He says that he wants to do things on Thursday and Friday but again doing is where the effort changes. I know this is a phase that we are going through and I know that he will get through these moments and go back to wanting to do his activities.

He showed me a video on YouTube and it says premieres in 35 hours. He told me that it would be shown to him in May. I can tell how much he is processing and connecting to time and hours. I asked him if he was able to read the clock that I gave him And he said yes. I feel that he is making Moore more of a connection and that time will start making more sense to him the over he gets.

When he was younger, he would take my hand to do the different activities on his tablet screen that he wanted to do. He is back to taking my hand, no matter what I’m doing if he wants me to do an activity on his tablet again. I try to get him to understand that if I’m carrying something or holding something he can’t take my hand, even though he wants me to do something. He has to wait until I can help him and then I will do what he needs me to do.

It’s hard when Owen won’t listen to what I want him to do and he will only do the things he wants to do. It’s also hard when he thinks something is funny and there’s nothing really funny about it. He wants to show me videos of different things that I can’t stand like kids having their teeth pulled. He thinks it’s funny to walk up to me with one of these videos and then show me what it is. It’s a typical kid interaction, but no matter how many times I tell him no he will still do these types of things and thinks it’s hilarious.

Today was emotional for me. He sat holding my hand for a greater part of the afternoon, talking to me about different things on his tablet or that he wanted to do. I know some days he doesn’t understand or can’t process all of the things he wants, but I know we are very connected and he can tell when I’m having a rough day. I’m thankful for my sweet baby O and everything that he is accomplishing. Each day is a gift and I celebrate his victories. Let today be your guide for an amazing tomorrow. Smiles to all and donut daze!

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!