We celebrated big time today. Owen slept until “six oh oh.” He was quite pleased with himself and I slept better than most nights. He was ready to surprise our friends at church and wanted everyone to ride on the elevator with him. I’m not quite sure what he wanted to do to surprise them but that is what he said. I knew most likely he would look at them and then talk to me for several more minutes as he adjusted to being there with everyone but I’m thankful he loves going to church and seeing all his people.

He thankfully was very calm all morning. Maybe he will start sleeping a little better knowing he can do more things as summer goes on. He kept saying that he slept until “6 oh oh.” He was asking about when he would see his best friend and if we would go eat Chinese food today. He didn’t ask if his friend could go to get Chinese food with us though. It would be a guessing game as to what he wanted to eat after church. You know he will have big plans to tell me. I’m thankful for all his words and I think it helps when he says that he wants to follow through with those choices.

He had a great morning and was very calm for most of it. He ate his breakfast and he wanted to make sure we were going to church. He told me he wanted to wear his red shorts to church and he was going to wear shorts the rest of the week because it was hot. I love how he is now explaining everything and able to make those connections. We got ready for church and we headed out the door.

He was very happy that we were at church and enjoyed his morning. He wanted Wendy’s for lunch and on the way home he told me he was rude to one of the people at church. He was excited to see his people and he often tells me that he is acting up so that he can continue to have these conversations. When I asked him if he really was mean and rude, he laughed and said, “No way.” He asked one of our other friends when he could come over. We made plans with some of our other friends to go to breakfast before we went swimming on Tuesday.

All afternoon he asked me when he could go to her house again and if our friends would go to the pool with us on another day. I know he will enjoy the pool. He wants to go to several different pools because one has slides and another has diving board. I think he likes trying out all the different pools.

One of my favorite things is to hear Owen say “I pray.” I make sure that I pray with Owen all the time and he hears me randomly calling out to God and saying I pray. Every night before he goes to bed we pray. Tonight he prayed for sleep and was thankful for all his people. Each day I try to work on life skills with him. The most important thing is for him to remember he is loved and to share that love with others. Let laughter, fill your heart and the memories fill your soul for what tomorrow will bring. Smiles to all and donut daze!

It was a mostly successful night I would say. Owen woke a little after four. I told him to go back to bed and he did without screaming or being mad. He came back close to five to get his tablet but he didn’t push me to get up. I was thankful for that and slept almost another hour. I wasn’t feeling that great so I was glad to sleep a little longer.

He was hyper-focused on who was going out to eat with him this coming week and when we could go. Plus, of course, he wanted to talk about when he gets to go to the pool and all the Dollar Generals. He pulled up Google Earth and showed me three different Dollar Generals and a Walgreens that he called Dollar General that he wanted to “go shopping push the cart round the store.” We have some of his plans in motion for the week ahead and he is happy.

He was staying pretty calm throughout the day. He talked about going places but ultimately we stayed home. I was feeling better but my stomach was still giving me fits. I took my medicine and it helped. I’m thankful that I’m not nearly as sick as I was with the chemo infusions.

He had told me all the drive-thrus he wanted to go to. He is my food dude. It is so funny how Chinese food has become one of his favorite requests. I think he liked everything we tried the last time we had it except the “chicken and duckling soup” he requested but I know he liked the egg rolls a lot.

He told me it is going to be a surprise if our friends see him tomorrow at church. I laughed at the way he was telling me all about it like it was going to be a big secret for them. I told him we plan to go to church. He told me he knew and gave me this big mischievous smile. He went on to tell me that there were two more days of June and it will be July on Tuesday. He said, “It will be nighttime soon and then I go to bed with my light on and it’s bright outside not nighttime but nighttime.” It is amazing how he describes it all and wonderful how much he can tell me now. I love how expressive he is and precise in his details.

As it was getting close to bedtime he wanted to listen to Franz Schubert. He has so much stored in that head of his. He learned about different musicians and artists from the Little Einsteins. He truly fascinates me with all his interests and knowledge. He told me he was going to stay in my bed and I told him that he had to go to his bed so he could have his light. We said our prayers and he said, “Dear God thank you for Owen I hope we all sleep tonight so we can go to church amen.” I seconded this. Thankfully he fell asleep quickly. His giggles were the best part of my day. He told me to tickle him with laughter. I dreamt about the days with his words and laughter would fill the air around me. And my dream came true. Never give up on the hope for tomorrow. Smiles to all and donut daze!

#autism #autistic #autismfamily #autismawareness #autismacceptance

Guess who was very excited to see his grandma?! Owen woke at one and he had no intention of going back to bed. He did however let me go back to sleep numerous times. He came to check on my progress a couple of times but I would not confirm or deny that he was going anywhere today and instead informed him that he knew the answer so on his merry way he went.

Thankfully I slept in and out for the next few hours and at least he wasn’t screaming as he pointed that out to me. This made me know that sometimes he realizes he is doing it. I finally got up and he asked a lot more questions. He wanted to know what time we were going and what she would be wearing. I told him I didn’t know and I didn’t know. And he wanted to know.

Even though I know he can find absolutely anything and doesn’t forget a thing it still shocks me when he finds random things and how he can actually do it. He came to me with his tablet, open to pictures of one of the indoor pools in our city. He told me he wanted to go to the pool so he could jump off the diving board. He explained that he needed to put his head under the water and breathe. This is something he’s still learning how to do, but he definitely wants to learn so he can go off the diving board. It is one of my rules that he has to put his head under the water before I will let him jump off the diving board.

It was finally time to go meet his grandma and he couldn’t wait. She got him a little pool so I packed his summer backpack with his swimsuit. Last year she got him a pool and he wanted nothing to do with it so this year she got him a tiny one to see how he would like it.

At first, he wasn’t convinced that he wanted to get in it but then he didn’t want to get out of it. He told his grandma that he wanted me to come watch him in his pool. So it wasn’t long and I went to pick him up. He was very excited about his pool and he was talking about when he could go swimming with our new friend. I told him we would go this coming week.

When we left her house, he wanted to “drive around.” I took him to see several of his favorite places and then we drove out to look at the woods. I want him to get used to us driving to different locations and hopefully, we’ll be able to find some property soon and be able to move. When we were close to getting home, he asked if we could get a pizza. I ordered the pizza and we had a little bit more time to do his “drive around.”

I had him carry the pizza inside. I’m trying to teach him to keep the box straight. That is an interesting lesson to teach. He was eating his pizza and had pizza sauce all over his hands. He hit his hand on the chair but not very hard. He looked at his hand and he said, “It's bleeding.” I told him it was pizza sauce and he said, “Nah uhh.”

Nighttime came quickly and he wanted his bath and then to sit and play on his tablet. He fell asleep in my bed and it took a lot of convincing for him to get up. I pray that he sleeps tonight because he knows that he’s not going to his grandma’s house tomorrow since he went there today. He talked about the pool a lot. Both his new little one and going to a bigger pool. I am so happy that he is making all these new connections. He’s doing a wonderful job and I’m so proud of him. Let today bring hope to your heart and fill your soul with gladness. Smiles to all and donut daze!

The day started a little early and a little cranky but thankfully we dialed it down before the screaming began. Any correction is a correction, any hint of sleepiness or me wanting more sleep can be turned into a moment of time that can spiral us into a very interesting day before it can even become a day. Thankfully Owen looked at the clock, took his tablet, and went back to his room, kinda.

After I was able to process that it was morning time we got our day started. Some days I’m tired before I even leave the bed. His energy is what one might call high and my energy might be called “momma needs another pot of coffee.” He knew we had a very busy day ahead and he was excited about it.

We were meeting our friend for breakfast and bowling. He was ready to get going. I explained to him what was happening and at least this time he was a little more calm about all the steps we had to go through before it was time to go. It was finally time and he was ready. We got in the car and headed to Cracker Barrel.

Besides not getting the dude enough pancakes he ate a lot of food. I ordered him a kid's pancake meal and they were gone before I could even cut them up for him. Then I got a meal that had chicken fried steak and gravy plus eggs, hashbrown casserole, grits, and biscuits. I gave him a little bit of everything and he ate most of it. He loved the chicken fried steak.

We didn’t get to go bowling because they were closed due to no water so we drove around instead and showed our friend several of the places Owen loves like the train depot. She did wonderful with him and it was nice to have a different perspective on everything. He wanted to go bowling but he handled the disappointment well. It was good for him to learn that we could still do other things when we were disappointed. It was good for him to go through the process and our friend handled the situation well.

He keeps reminding me that I hurt my foot and he got to ride with other people. He asked me who was going to take him to therapy when I hurt my foot and I told him I didn’t plan on hurting my foot again. We headed to his therapy after dropping our friend off. He looked at his tablet when we were in the car and said, “It only has a little bit of juice.” I’ve said it to him before but it is always funny when I hear my words coming back at me.

His speech therapist said he had a good day but he was extremely focused on what was next and what everyone was wearing. I told her it didn’t surprise me and that I completely understand. I wanted her to know that his focus isn’t always on the moment and that anything she works on with him is fine because I know it is about him learning people skills as well as therapy. He did good with the rest of his session but was very focused on clothing.

We came home and he told me that he wanted Chinese food when I took him to grandma’s house tomorrow. I told him we would have to wait and see. He was very focused on letting me know that I needed to be awake and not napping when he was sitting right next to me. I tried to explain I was tired from our very busy day.

The screaming and squealing can be unreal sometimes. My heart flutters at the first note of the scream, waiting for what will happen next. Sometimes it is completely attention seeking and other times it is full-blown meltdown mode before I can even turn around because I haven’t answered the same question for the hundredth time or maybe the thousandth time in the exact same way he needs it. Redirecting a genius is not exactly an easy chore. As the scream begins to soar my heart races and breaks a little more. I know he can’t stop himself or process it all but it still doesn’t hurt any less. This is my amazing sweet baby O and the screams of my son echo through my soul and bounce off the walls of my house and my bones. I pray for my words to come out right and for him to understand screaming is not the answer he is looking for.

Bedtime came and he stood in the kitchen once again screaming about going to his grandma’s house when I kept telling him he was going. I went to my room and he followed me back in. I told him that all he had to do was go to bed and he said sleep until “five oh oh am amen.” I said, “Yes please.” Even though he screamed a lot tonight he had a good day. He can’t wait for our next adventure and that makes me happy. His laughter is what makes me smile. Find joy in your day and a smile in your heart. Smiles to all and donut daze!

The good news we were both in a good mood. The bad news we were both up early but thankfully we were both up early. It seems like the night after my infusions I’m up and down a lot but still being up before four in the morning is not very fun. Owen was pretty calm but ready for all his days ahead. I was excited to get a cup of coffee.

I was in a good mood when Owen woke up and didn’t scream at me. I didn’t even attempt to not give him his tablet or tell him to go back to bed. At that point, I had been up at least an hour. He was in a good mood but was quite full of the continued mischief from yesterday. He was quite interested in licking my head and biting my hair. I am trying not to show my emotions about these things so he won’t do it as much but I haven’t seen a decline in the attempts at all and in fact, he finds it even more amusing and wants to do it more. Redirection with Owen is very complex. The never ever forgetting a thing makes it even more complicated.

He was staying pretty calm but he was asking a lot about his best friend and wanted to know when he would see him again. He told me he was going to take a nap. I laughed. He didn’t act tired and I think the last time he napped was when he was two. He told me he wanted a new bed like he used to have. I asked him which bed and he said his baby bed. His crib converted into a toddler bed. Maybe he wants a smaller bed. He has a double bed with a tent over it and rolls all over. He tells me he doesn’t want the tent off though.

The city tests the emergency sirens once a month and as soon as he heard them he told me that we needed to go downstairs. I explained to him that they were testing to make sure the system was working. He told me that we had to test going downstairs. I told him it would be fine because we knew how to go downstairs.

He is very excited for tomorrow. We are going with one of our new friends to breakfast at “cracker baker” and then bowling. I am excited about it too. Plus, he then will go to his therapy. On Friday he is going to see his grandma while I have an appointment so he won’t go to see her on Saturday. It will be good to shake up his schedule a little more so hopefully it will help with his sleep.

I’m thankful he was calm for most of the day. We shared a lot of moments of laughter and did many different activities. Hopefully, we both sleep better tonight because we have a very busy day tomorrow. Even though I know what happens with his little mischievous smile I love to see it because it is the absolute best to see the shine in his eyes. Follow your heart, let the light shine in, and know that you can make a difference in this world. Smiles to all and donut daze!

I didn’t tell Owen yesterday what we were doing today and I made a teeny tiny little mistake when we woke up. I suppose it was a good and bad decision. It was pretty much a successful night. He woke a little before five but I said the magic words as he was getting ready to go into full-blown screaming mode. I told him he was going to our friends’ house and that stopped him in his tracks. I told him he had to go back to bed until “five oh oh” and he went. He came back a few minutes before five and I told him three more minutes since we were already winning the day. He did it and then I had one very excited boy that couldn’t wait to leave our house.

He was running through the house yelling our friends’ names. He couldn’t wait to go to their house. I explained to him that it was still hours away before we were going to meet them at the cancer center but he came to check with me every few moments to see when we were heading to the “camping center.” I tried to get him to understand it would be a while but when you are excited you are excited and nothing is going to change that.

When it was finally time to go to the “camping center” he couldn’t stop talking about our friends and what they would do today. He loves going to spend time with “his people.” He has told me all the people and places he wants to go see. He is quite the planner but sometimes it is the follow-through that doesn’t always happen. I am trying to plan events that he will enjoy and hopefully follow through with.

We got to the cancer center and he was off to enjoy his day. I had my lab work first and then my infusion. It took a little bit to get the bloodwork done because I think the heat had caused me some dehydration but she was able to get it done with a few little tricks. I was thankful that my bloodwork came back fine. My blood pressure was a little low but all my other levels that had been low before were doing good so I was able to have my normal infusion.

When I was done our friend brought Owen back to me. He mostly was happy on the way home but he wanted to make sure he got his point across by yelling at me. He wanted to make sure we drove by the “blue church.” I kept asking him to tell me about his day and what they did. He kept asking when he would see our friends again. I was thankful he enjoyed his day.

The night was full of laughter with a huge side of mischief and doing everything to try and act up but I kept leaning into the moments instead of saying anything about my own emotions. He wants me to be grossed out by looking at some of the dental and eyeball videos. He was not happy when I kept saying bring it to me. This is where the fine line is. When he gets his way of showing me things he knows I don’t want to see he finds it hilarious and will do it over and over again. If I say show it to me then after so many attempts to upset me he becomes highly agitated and the screaming begins. Walking that fine line can be extremely hard. And distracting him takes every bit of effort I have to even remotely redirect him. He is a genius on top of all the other things so one genius trying to top another is always quite interesting.

We have planned to not go anywhere tomorrow. Generally, the day after my infusions are pretty exhausting and we have several very busy days ahead. We have talked a lot about it so I hope that he will sleep through the night and so will I. After the great discussion of honey mustard in his hair and the removal of said honey mustard it was finally bedtime. His laughter makes my day and I’m thankful for that amazing gift. Today is the first day of the rest of your life. Let that be your motivation for a better tomorrow and make all your dreams come true. Smiles to all and donut daze!

Summer, it is summertime and we are ready for school time even though we have some fun things planned Owen is not convinced that he wants summer. He was ready to start his day and that meant he woke around two. He was agitated but at least he let me sleep for a couple more hours and no screaming.

He had big plans for all his days ahead but today he knew he was going to his grandma’s house in the morning, then music therapy, and his vision therapy. We were going to the park but it was way too hot for that. On the way to his grandma’s house, he wanted to make sure I didn’t forget he has a dentist appointment in November. I hope we don’t have to reschedule it. He also pointed out to me where we got our new car a few years ago and that he wants me to trade in our car for a black one like his best friend’s family has. I told him I couldn’t do that right now.

He had a lot of fun with his grandma and I picked up Tudors for him before his therapy. His music therapist said he did fantastic. He seemed so much calmer to me after he went to camp. He was able to do new things with her and talked about what they did. On the way home he was talking about the wrong color pants different people were wearing over the last few days. He said, “I hate their pants.” It felt like progress because he expressed his emotions and then we were able to talk about his emotions.

We were home for a little while and then we went to his vision therapy. He told me his doctor would be happy. I said I hoped so and he said he would behave. He told me he wanted Chick-fil-A for dinner. I said we don’t get to have something every day and he said today we do.

He did so well. A did a little too much talking about gum but he did all the exercises and threw the ball back to her without instructions. We were both in shock. It was great. She has a ball with letters. He caught it with one hand, found the letter she wanted him to find very quickly, and then threw it to her before we even knew what was happening. He probably did it close to ten times. It was so cool. He sat on the trampoline for a bit but then did the exercises. It was another good appointment and I was thankful.

I was happy he had a calm day. He ate his chicken nuggets and fries. He was pretty tired since he had been up since two so I pray tonight he sleeps. He doesn’t know that he is going to our friend’s house tomorrow while I go to my infusion. I didn’t want to tell him so hopefully he would sleep better. He laughed a lot, played music, and wanted to play games. It was another exhausting day but it makes me so happy when he is in a good mood. Let today be your day for victory. Smiles to all and donut daze!

The screaming still gets me. Habits are hard to break, his, mine, ours. How do I convince my mind, body, and soul not to show any emotions about screaming or any other behavior at three o’clock in the morning? I ask this question all the time. All I want to do is beg him to stop screaming and go back to bed. One scream or ten screams all feel the same when sleep never seems to exist anymore.

I kept hoping he would sleep past three but he couldn’t seem to get there. His bedtime is something that I have tried to adjust for a while but it never seems to stick. Every once in a while he stays up late but most of the time it is right about the same time each night.
Just one day at a time is what I’m trying to do. He was calm after the first three hours we were up so I was going with that.

He asked when he was going swimming. I told him very soon. We have had lots of appointments between the two of us so it’s been hard to get to the pool. He told me “Pack my summer backpack so I can go to the pool.” I love that he is excited about his summer backpack. He also told me to get him some “summer sandals” as he calls them.

As the day wore on we started celebrating Christmas for some reason. He loves telling me in December we will celebrate Grandma and Santa. I am very thankful he likes the holidays more and connecting with them. He told me he wants to see fireworks this year. We will see how that goes

I’m always trying new foods with Owen and today he ate chicken Alfredo pasta. He loved the pasta and the grilled chicken. He will tell me doesn’t want to try something and I tell him that he has to try at least one bite of it. The older he gets he tries more and more foods.

Bedtime was not an easy time. He once again came and sat with me in the “white bed.” When it was finally time for him to go to bed we went through the whole process and then said our prayers. I went to my room and he was supposed to go to his. Instead, he followed me back to my room and kept telling me that I needed to take him to church. I told him I agreed. He started screaming louder for me to take him to church. The more I agreed the more he screamed. I told him that I was agreeing with him and all he needed to do was go to bed. Twenty minutes later he was finally in bed.

I pray he sleeps tonight and I pray I find sleep. I have so much on my mind I hope I can sleep. We laughed a lot and he was very talkative. I’m thankful that he had a good day besides waking up early and screaming at me. I hope we can go to church tomorrow and have a great start to our week ahead. Let the laughter fill your heart with beautiful memories that carry you through all your days. Smiles to all and donut daze!

Well, four o’clock in the morning is better than three o’clock but attitude is also important. He was so excited about West Virginia day at camp. He was talking about all the things he was going to do today and seeing his people. The week of activities made a huge difference in both our lives.

He knew we had a call from his advisor for the program he is on at ten and he was so excited to hear the phone ring. It is always interesting how he handles phone calls. I never know how he is going to process them and if he will scream the whole time I am on them. Yesterday he wasn’t happy when the nurse called about my infusion and he talked the whole time but other days he loves it when people call but he then wants them to hang up immediately
or he will keep asking me who they are and when they are going to hang up. Since my cancer diagnosis, I have been on the phone a lot more. It was getting easier for him but then when the calls were almost every day his emotions got stronger again about them. His advisor had worked with us for years when she would call to help him process it so he now at least doesn’t have meltdowns when someone calls. It doesn’t matter if my phone is on silent or ringing he has the same reaction. And one of his favorite things to do on his phone is watch videos of phones ringing and people talking on them.

After our call, we got ready and left for his camp. It was his last day. I tried not to point that out to him and made sure he knew he was coming back on Monday for his music therapy. He has enjoyed all of the days and activities. He was excited and talked about it the whole way there. He couldn’t wait to see “his people.”

He did so well at camp. Owen quickly took to one of the volunteers with the camp. She already understood a lot of what he does and how he reacts to responses and emotions. This helped him tremendously through the camp. I’m thankful for this incredible experience for him. The staff worked hard to not only create a fun environment for them but also include so many activities that promoted social skills and a beautiful learning experience.

Every day he left there full of stories and telling me about the activities. This isn’t always easy for him to explain to me so I was thankful for these moments in the car with details about his day. He wanted Hardee’s on the way home and to “drive around and see the blue church.” It’s interesting how he sees the world. Across the street from what he calls the blue church is what could be considered the blue church. It has a blue roof but he calls it the tall church. The “blue church” has reflective windows that lets him see the sky in them so he calls it the “blue church.” This is my assumption because of the way he describes it to me but it could mean something else to him.

I told Owen that if we were up before five and he didn’t let me sleep we would be staying home tomorrow. I explained that every day this week we were up very early and mommy needed rest. I prayed for sleep for both of us and that he would stay in bed later. He was pretty calm throughout the night. I tried to keep him up later but he fell asleep in my bed and then it was harder to get him calmly to his room. He kept wanting to talk about what we were doing next week and if it was summer break. He knows it is until August but he still has to process it. I’m thankful for an incredible week and how much it meant to both of us. His smile said it all and made my heart happier. Be in the moment, let your happiness shine through, and know that the rain makes the flowers grow. Smiles to all and donut daze!

Rinse repeat. “Ice cream fell” was going to be fun today for my sweet baby O. Owen was very ready to get to his therapy camp and three o’clock in the morning was once again the wake-up time to do it. He was at least calmer today than he had been all week. I requested he go back to sleep or at least go to his room and that dream did not come true for very long.

He told me all kinds of things that his mind has been holding onto forever. It fascinates me the random information he selects to tell me in the middle of the night. It still amazes me how much information he retains and can share. He wanted to tell me about more places we visited and I didn’t remember. I can’t even imagine how he keeps it all straight.

I tried to explain to him that he may not require any sleep but I did. He said he wanted chocolate milk. I knew exactly what was going to happen. He wanted me to put it on the table but he didn’t want to drink it. I got up and our day began.

He was excited about getting to therapy. He couldn’t wait to see “his people.” I told him that most of his people were probably still sleeping at that point but he was happy. He had a lot of fun playing games with me and laughing hysterically at everything. He was glad I finally said it was time to go. We got in the car and he talked about it being summer break the whole way there.

He had so much fun. He told me about it being ice cream day and they did lots of “ice cream related activities.” It’s interesting when I hear him say words or phrases that I know he learned from hearing it from someone or a video he has watched. He told me he wanted pizza on the way home. He loves ordering Gino’s pizza so we can go through the drive-thru and look at the sign that the “leprechauns” helped build after the storms.

When we were driving home I stopped because a squirrel jetted out in front of me. Owen didn’t like it. I told him why I did it and he still told me I wasn’t paying attention. I said I was paying attention that’s why I stopped. I explained that I looked in my mirror and no one was behind me so it was fine if I stopped. I asked him to tell me why I stopped and he said, “The squirrel was going to run under the tire fix the tire it be square tire.” He knew exactly why I did it with a few embellishments. “Square tire” is from the Mickey Mouse Clubhouse. He stores it all in his brain waiting for the right moment to share.

When we came home he requested that we go to the coffee shop we used to go to which is now closed. He knows it is closed but he misses going. He brought me Google Earth with the coffee shop location on the screen. I told him that we could go to another coffee shop soon.

The night went quickly and he once again started talking about wanting a new bed. It’s funny how almost every day he asks me for a new one. I’m not quite sure why but he says it and then asks for his “tent off.” When I tell him we can take the tent off he says no he wants it left on. I think he likes the closure on it and the way it makes him feel secure. He tells me he wants a square bed so I’m not quite sure what that means. I asked him to show me what he meant. I told him when I figured it out he could get a new bed.

He was talking about it being West Virginia day at camp tomorrow and he was very excited about his day. We got ready for bed and we said his prayers. He said, “I pray everybody sleeps tonight.” It didn’t take him long to fall asleep. I pray he sleeps past three in the morning. I’m thankful for this incredible week he has had and all the wonderful experiences. He has thoroughly enjoyed them. His laughter won my heart and I was thankful he stood with me singing. It always makes my day. Never give up on the hope for tomorrow. Life can be amazing. Smiles to all and donut daze!