Thankfully Owen slept all night. But he woke up sneezing. Welcome to spring. I prayed all day that it wouldn’t turn into anything more and I’m still praying as the sneezing turned into a snotty nose. It seems like every spring and fall he gets something when the weather changes. There’s the group that says the weather can’t get you sick and there’s the group that gets sick every time the weather changes. I’m somewhere in between with what I think but I know he’s got a snotty nose. His new favorite thing is to run back and forth while we wait for the neighbor and his bus. He told me “today is March tomorrow is April” as we stood there waiting every time he wasn’t running. I am so thankful he is starting to get a grasp of time. I always feel like he understands time or how long something takes but knowing the months and how the days of the week work together will help him to understand the holidays and breaks he has in his routine. When he came home from school it was drizzling. When I stood up to come outside I dropped some of my hot tea on my pants. I knew if the rain didn’t get us my tea spot would. It was barely raining by the time he got home but my pants still had the tea spot. Before he even got off the bus I could see his expression change as he bent down to look at my pant leg. The emotions feel like I’m riding a merry-go-round too fast and everything is spinning as I try to stand up. My heart hurts from all the minutes, hours, days, weeks, and months that rain or a spill on blue pants have caused my sweet baby O heartache. I can’t imagine what that spot on my pants does to him. And then there are moments he doesn’t even look at it. I can’t shield him from the world but I wish rain wasn’t something that upset him. And then my brain runs to the fact that he loves water. He absolutely loves getting into the tub and would stay in there for hours with the shower running if I let him. He might like pools even better. When he came home from school he was in Friday mode. That meant we were home for the night. He was my nonstop eater tonight it seemed. He burped and then said, “scue me.” I love when he makes connections to his bodily functions. This kind of awareness is part of the development of life skills and they are exactly what he needs. “Veggie chips,” he said, quickly followed by “I don’t have any chips I only have veggie straws and regular chips.” I never imagined my exact words would ever come out of someone else’s mouth but it is constant. He probably can say my words better than me. We are supposed to go to the Easter egg hunt at our church tomorrow but his allergies are already playing havoc on him so we will see what I think in the morning. I want to take him very early because I think he will get overwhelmed by all the eggs everywhere. He wants all the leaves off the parking lot so I have a feeling he may want all the eggs off the grass. He has talked about it numerous times and I showed him what it would look like on the computer but when we are there it might be a different story but for him to even want to go makes me happy. He only got up two times before he fell asleep. I pray he sleeps well again tonight. When the heaviness of the day feels like the rain will never stop always remember the sun will rise again tomorrow. Hold on to the strength of the sunshine. Smiles to all and donut daze!
It’s always a day of celebration for Owen when he gets to go to therapy. And today’s celebration started at about three in the morning. He wanted to make sure I knew he had to check in at therapy today. He went through all the steps and then requested his tablet. I told him he needed to go back to bed. I explained that we still have several hours before we needed to get up for school. He went back to bed three more times. I finally gave in and let him take his tablet when it was close to five. The morning went quickly. When we were getting ready to walk outside he started yelling at me and wouldn’t come. I told him that if he didn’t stop yelling he wouldn’t have his tablet in the car on our way to therapy. He kept yelling. We got outside to wait for the bus and the running began. He kept coming back next to me asking when our neighbor was coming out to tell him bye. When she did I talked to her for a few minutes explaining how he likes running now and then he started getting agitated because she wasn’t leaving. I tried to explain she would be leaving soon but he kept getting upset. He was very anxious about our neighbor not pulling away because he wanted to race her. I told him to breathe and count to ten. He wanted to run on the sidewalk as she drove away. She pulled away and he started running. It’s his new favorite thing. He came back to me and ran in the opposite direction. He started dancing around the stop sign saying “that’s a stop sign.” When he came back to me he was singing “it’s a rollie pollie rollie pollie and I’m bigger than this.” It was the song I made up for him when he was little hoping the words and motions would help him work through his emotions and keep him from having meltdowns. Years later he will still randomly sing it when he is upset and it helps him to center himself. When I picked Owen up from school I didn’t bring his tablet. I explained that he could have it when we got home after therapy but he wasn’t getting it in the car because he yelled at me. I knew this would not go over well so I started asking lots of questions. I need him to understand how your actions matter. I told him we were going to the Easter egg hunt at our church on Saturday. He said that he was going to ride his bike to pick up the Easter eggs and deliver them to his friend. He then said he was going to hand our other friend his Easter robot BeatBo so that she could get his extra eggs. I love how he is creating stories and what he wants to happen in the future. He did amazing at therapy and he was ready to check in, more than once. The little victories like stretching, touching his toes, and being able to read the cards are the amazing blessings I cherish because I know for every one skill he has learned it has taken many steps of faith to get there. Believe in yourself and the rest will follow. Smiles to all and donut daze!
I wonder if Curious George has a good explanation as to why Owen has been waking up around four off and on for the last week. He was so excited to be awake this morning. He came to me wanting a hug a little after four. I’m exhausted. I hugged him and sent him back on his way to his room. This went on about five more times. I told him to listen for my alarm and that is when he could get up. I have an alarm clock for him, ok so I’ve had several alarm clocks for him. Most of them he had hand-delivered to me about two o’clock in the morning when for some reason he realized they are in his room and he doesn’t want them there anymore. He hid one in the hallway under a box he moved, Alexa he didn’t like because I made the mistake of trying to talk to him with it, and all the other ones didn’t make the cut for whatever reason. But yesterday I put one of the original ones I gave him in the living room and as soon as he came home from school he looked at it and moved it to his room. I thought that was progress. Now to figure out how to set the alarm and teach him how to use it. I feel like he is starting to get the concept of timers and alarms so this will help him learn how to tell time. I had to go to a store today and as I was approaching the front doors there was an extremely loud buzzing sound from their parking lot lights. The sound felt amplified in that moment because it made me realize how many times I’ve tried to take Owen into a store and before we even got inside he would be screaming to get back into the car. I hardly take him to stores anymore but even places we do go I watch to see how he handles them and what he struggles with and can handle. He had a good day at school or so he told me by answering my questions about what he did. He doesn’t always answer my questions with the correct answers but I can tell when he isn’t answering them correctly. In the same breath, I can’t always tell if he is answering them correctly either. His teacher and I communicate frequently to compare notes on his accomplishments and what we need to work on. The only thing he wanted to do when he got home from school was take a bath to get ready for his big Thursday, his favorite day. He fell asleep after coming to my room numerous times because I had my light on in my bedroom. He was in his bedroom upset because my bedroom light is on that he has to get out of his bed to see that it was on. This is how many nights go. I could hear him in his room repeatedly saying for me to turn my light off. To say the least, my light got turned off. It brings me back to the loud buzzing sound from the morning and I wonder if the light in my room makes noise. Electricity can make a buzzing sound or maybe it’s the bulbs themselves. I can only imagine how loud the world is to him. He’s excited about his Thursday and I hope he sleeps later tomorrow. I think about how happy he was running back and forth again while we waited for the bus this morning. His smile makes me happy and that’s what matters most. Find your happiness, share it with the world, and watch the smiles that follow. Smiles to all and donut daze!
Giant steps forward sometimes take years to make. And that’s ok. Owen’s words are not always the only ones that are hard to form. I too get caught up in what I’m trying to say or accomplish. Today was one of those days and these moments were entwined with his. Once he goes to sleep he’s been mostly sleeping better and waking in a good mood. He was ready for me to get my coffee and into the pillow filled white bed we went except for one little problem the stuffed octopus I had on my bed. I guess he usually doesn’t pay attention to it since it is generally with the pillows on the other side of the bed but his extra energy toppled the pillows over and the octopus then became a big deal. He wanted it hidden. He was not taking no for an answer. I try to explain that it’s my bed so I can have anything I want on it. This went over about as well as when I have laundry on my bed. Under the pillows, the octopus went and calm was restored. These are the moments I just have to breathe and let it go. He did great again about getting ready. I’ve made a few slight adjustments to the order we do things and this really has helped us. I try to give him two minutes with his tablet before we have to go outside to the bus and it seems to calm him. This morning he was playing with his sled app and he said, “go outside after finish the sled.” Generally, he says when he finishes the game so I like how he adapted his words. I love to see growth and he was shining bright this morning. “Go O go O,” he yelled out as he was running back and forth on our sidewalk waiting for the bus. It was a beautiful sight to see. He was also trying to skip or something similar. He doesn’t usually try to do these movements on his own without being prompted. I had to make sure he didn’t run too far before turning around. I wouldn’t be able to catch him so I always emphasize to him how important it is for him to stop when I tell him to. He was excited to see the bus come around the corner and off he went wearing his glasses and I wondered if they would stay on all day. He told me he wanted to see the depot when he got home so I told him we could and I wondered if he would still want to go when he got home. Today was a rough day for me. Losing my brother is one of the hardest things I’ve ever walked through. Some days it feels like quicksand is under my feet with every step. The tears beat up my soul today and I needed all those emotions released. When Owen got home he was ready for his glasses to be off and to get in the car to see the depot. I told him he could take his glasses off when we came back and he put them right back on. He had a “quick snack” using my words and we were off. I’m not sure why he loves driving by all the buildings so much but we made several “one more time” passes around the depot and the houses near the train tracks before heading home. He was happy and that’s what matters. He got out of bed to tell me how he checks in on Thursdays at his therapy appointments, what he says, and what they do. He got out of bed at least five times. It seems like the new routine but trying to keep him from getting up isn’t working yet however he is still sleeping pretty well through the night. I’m thankful for his growth and that smile that gets me through the rough patches in my day. Dream what some might say is the impossible dream and make it possible. Smiles to all and donut daze!
To say Owen was excited to start his Monday is probably the understatement of all understatements. He loves going to school and he was awake by four to tell me about it. He wanted his tablet but somehow I convinced him to go back to bed and then he was back with me and then back to bed and then back with me and then back to bed and finally I told him he could get up when the alarm went off which I knew was only a couple minutes at this point but it helps him to understand timing with actions and reactions. I sit amazed sometimes by all the things he comes up with. I thought I had an excellent memory as a child but nothing compared to how much Owen remembers. I always said when his words caught up with his thought extraordinary things would happen and they are. He’s doing much better with our mornings and getting ready when I ask him to. He knew he was going to school and then he would be going to his vision therapy. We stood outside waiting for the bus and we were discussing the planets. He started telling me the order of the planets so I looked them up and let him see them. I asked if he could tell me something about them and he started rambling off facts. When he got home from school he talked to me about going to see the doctor for his vision therapy and what room he wanted to be in. He wanted to go to a different room because he said he wanted to sit in the big chair. It was one of the first rooms we had gone in and he wanted to go in it again. She took him back into that room so she could do an updated evaluation and he was able to do more of the tests this time. She also reevaluated him for his glasses. We are going to ease him back into them and then order the newer prescription. He told me he needed to go to see his dentist and explained where her office was and what he would pass to get there. It won’t be long and he will be able to tell me it all. When we got home I fixed dinner. He always asks for food even though he has it on his plate. I try to explain to him that he can have more when he is done but I won’t give him more if it is still on his plate or milk in his cup. I haven’t figured out why he does this. Bath and bedtime seemed to flow together and this time he only got out of bed twice. I’m thankful for so much progress. Your little victories are constant reminders of the giant steps you’ve made. Smiles to all and donut daze!
Quietness in your soul doesn’t necessarily mean you aren’t growing. Sometimes those moments of silence shed new light on how you can move forward. Owen slept a little bit later than most days. That extra few minutes always feel like a victory. I don’t think I have completely processed that he sleeps most nights all the way through. This is years in the making. On the weekends he doesn’t generally get into bed with me after I get my coffee. I was surprised when he waited by the light for this moment. I was happy about it but I was surprised. I keep wondering if my words from yesterday were resonating with him. I try to get him to understand that we have to work together as a team, we can’t do all of this on our own. And even though he may not want to obey any rules he has to. On the way to church, I was asking him questions. I said can you name three languages. He said, “Thailand Hindi Turkish.” Then he started singing the alphabet in some language. When he was done he sang it in English forwards and then backward. So I asked him if he knew all the months. He said them and then did them backward. Then he did the days of the week backward. It was magical to hear all the connections and words. When we were leaving the church he wanted to “go sing from the good book with song,” he said. I let him ride his bike in the parking lot for a while. He is getting really fast and I’m trying to convince him he doesn’t want to fake crash or real crash. And he doesn’t have to pick up all the leaves or rocks in the parking lot. On the way home we got his food and he was much better this time about eating it. He wanted to take his bath the minute we got home. This is where the rollercoaster ride takes off. If I tell him he has to wait he asks me every two seconds. If I tell him he can take it right away he starts asking me to take another bath as soon as he gets out of the one he just took. It’s amazing how quickly he answers questions when he wants something but they are generally incorrect answers. I told him he could take a bath after he finished his dinner. I knew the answer but I asked as chicken sat on the plate if he was done with his dinner. He said, “yes ma’am finished dinner.” When I told him he didn’t finish his dinner he laughed and said, “bath.” You would think I would get this by now but I have to explain to him that he needs to answer questions correctly. Bath time came before dinner time was finished but it all works out in the wash. His prayer tonight was about being thankful his birthday is in March and he has friends. Quickly is not the word to describe him going to sleep since he came to my room five times but he was excited tomorrow was Monday and he was going to school. Find what makes your heart sing and let everyone hear the beautiful melody of your soul. Smiles to all and donut daze!
I woke up more times than I could count last night. Memories and decisions floating all through my mind. I wish it had been sugarplums dancing there instead. I would give anything to be laughing at one of my brother’s jokes right now. I try not to let the screaming or demands Owen puts on me dictate my day. But they do, sometimes. He knows how to push buttons like any kid with his momma but he also doesn’t understand that his repetitive words cannot always be met with instant gratification no matter how many times he says them or acts out. We spent two hours in the middle of the day for his bath time because he wouldn’t get out of the bath that he had already had a huge meltdown about wanting to take it at the exact moment he said that he wanted to take a bath. He constantly will take my hands away from whatever I’m holding or doing to help him with something he needs me to do and it is generally his tablet. I try to make him understand that sometimes I have hot coffee in my hand or I’m carrying something else that I don’t want to drop. He thankfully has been wanting to bowl again on Saturdays and we got there right around the time they opened. Our friends joined us a little after we started. It was nice to have them there with us. Owen was excited to bowl and then we sat and watched them while they finished their game. I took him to see the train depot and several overpasses. I’m still not convinced we’ve been to the one he wants to see, but he gets happy when he sees all of the different ones. I think I figured out about why he is bringing up the babysitter that he had years ago so much now. He is watching baby Goofy and they talk about his babysitter. So he is wanting to talk about the babysitter he had. It felt like it was a great connection. The night was filled with him asking for lots of hugs and then ignoring me when I asked him to do something or to give me a minute when he asked me for something. I’m trying to show him the clock and what it means to give someone time to finish a task they or doing or even if it is something fun they are working on. I want him to associate this with kindness and grace as well. It feels funny saying that we had a good day after the rollercoaster of emotions day we had but it was a good day. And maybe it was mostly my emotions. I’m thankful for all the connections he is making and I can’t wait to see what tomorrow brings for my sweet baby O. The dude is ready for “church church church please.” Celebrate your victories no matter how big or small celebrate them all. Smiles to all and donut daze!
The sleep has been better for Owen but the getting there has become a new battle that Curious George does not seem to know about and has not won. He wants to make sure he gets lots of hugs. I think it might be that ploy to stay up but he’s getting good at it. Words are a concrete memory of something you could easily forget, especially once they are written words. Some days it’s hard for me to write because it’s a moment that can be judged, can be overthought, can be reconsidered, and that’s all from my own perspective. I’m trying to ask Owen a lot of questions so that we can work on answers. Answers are hard, questions are all around us, but the answers have a direct reflection on our choices. I want him to understand his words are important and his choices are important. This morning as we were waiting for the bus I asked him to tell me what some of his favorite things were. This is a hard concept for him. I think veggie straws are his favorite food but maybe not. Favorite foods for me invoke favorite memories so they are important. Chicken and dumplings are one of my favorite foods because they remind me of my Grammy. I want Owen to find connections to his favorite things. I asked him more questions, maybe questions that would be hard for someone else and he got them all right. A car drove by and I wanted him to tell me about it. He is learning to be descriptive and so I wanted him to describe what he saw. He said it was a white car with red. He was completely right. I asked another question and this is where he answers wrong because he wants to get his answers out quickly. I asked him how many tires the car had and he said, “two nah four.” His first answer is generally wrong. I then asked him how many doors the car had but I told him to look at me before he answered and the same answer came “two nah four” but he was right with the four. He is figuring it out. He is getting how to answer questions. I think once he remembers to breathe and then answer he will get it right so many more times. When he came home from school he said he wanted to go to the depot, then he changed his mind but he does want to go tomorrow when we go “bowling bowling bowling.” He started looking at the basketball hoop that we have over the door. It had been a while since he looked at it like this. He stands so he can see its shadow and walks back and forth around it. I can tell he is processing more words and figuring out how to ask for something he wants. “The fruit song instrument,” he worked through to get to that phrase. He knows what video or object he wants but he doesn’t always know how to ask for it. With his words and connections, he is finding ways to say what he needs. “Leave the light off,” he said as we got into the bathroom and he turned off the light I just turned on. He wanted no lights on and I didn’t push it. There was still the reflection of light from the outside so it was at least ok for us. “Help you crack an egg,” he says to me when he wants me to do something on his tablet with him. The phrase comes from a game on his tablet from years ago. I’m not sure how it became a go-to phrase but here we are. I’m thankful for all he is learning and how much he has grown. In a thousand ways, in a thousand days, it doesn’t even matter what we think we know and what we know but it’s more about how we live our life. Kindness, compassion, and grace are the most beautiful things to witness and especially when you imagined it all differently. Make today matter. Smiles to all and donut daze!
Words were flowing as soon as Owen woke up. He had a mission though, “white bed.” He immediately went to the bathroom before I even got to him. I love days when he is calm and patient. He knew I needed to “get the coffee” and then we were off to the white bed. He was excited about one of his favorite days. He loves going to school and he knows he gets to go to therapy. I can tell his will to do what he wants is getting stronger because if I give him instructions he tells me “no” and does exactly the opposite. I can also tell the teenage years are not that far off. I want him to be able to make his own decisions and independence is a huge thing to me but he also has to be the kid and let me be the grownup. That’s easier said than done. Putting your foot down as a parent is hard and learning how to say the rules, follow through with them, and keep everyone happy and meltdown free is a whole other story. We learn, we love, we grow. He was very talkative while we were waiting for the bus and he was attempting to answer my questions while avoiding them completely. It’s part of the activities we are working on. He was so happy to see the bus turn the corner and off he went. When I picked him up from school he seemed tired but by the time we headed to therapy, he was ready to go. I took a little detour so I could show him one of the other underpasses. It still isn’t the one he keeps referring to but he loved it. When we got to therapy he wanted me to come in again. I was going to let him go by himself but I wanted to tell them how his IEP had gone yesterday and ask them a few questions I want to work on with him. He eats a wide variety of food but he has a hard time with the actual eating of the food. He mangles and mushes food and in turn, little pieces go everywhere. Plus he won’t open his mouth very wide and then he likes to put something in his mouth and then push it in and out again multiple times. It isn’t the structure of his mouth or tongue because he has been checked by multiple doctors and his dentist so everyone believes it is more of a sensory issue or another behavior so I am hoping that his occupational and speech therapists will have new exercises that will maybe work for him to get his mouth muscles opening up more. He also likes to put food in his toes so it leads me back to sensory. He did amazing at therapy today and he asked me to drive him by his beloved windows. When we got home he was talking about the days ahead and he immediately wanted to take a bath. He has been enjoying taking a bath lately even more than he used to and I thought it was a lot before. He is happy about it so he can have bubbles on his head and he still wants to be “red Owen” by pouring tomato juice on his head. When he was in the tub I took one of his pairs of jeans from the laundry. I washed it in the sink after showing him them semi-wet. He let me hang them up but he was not thrilled. I told him that they will dry and he can wear them to school tomorrow. He was concerned about them but he didn’t scream about them being wet. He kept saying “baby’s diaper wet they will dry” and I knew he was thinking a wet diaper is like his pants. It felt like a big day of connections. I’m exhausted but I’m excited for what will come next with my sweet baby O. Follow the melody in your heart and hear the song of your soul. Smiles to all and donut daze!
I’m thankful for a day that moves us forward. Today felt like that kind of a day even though none of it seemed seamless or effortless. Owen repeats himself a lot. And by a lot, I mean a lot, a lot. It’s a lot. A lot of repeating, a lot of repetition. And then a lot of the repeating repetition. There are days I try not to get on the repeating train with him but most days I seem to derail myself more than I ever get him off track or maybe it’s back on track. He slept great and once again was ready for school. I’m glad he loves going and loves his teacher. We got out to wait for the bus and he was on the overpass/underpass train and wanted to go see the depot. I keep wondering if the overpass he wants to see is close to the depot. He’ll figure out how to tell me. “Do you eat grass,” he said numerous times as we were waiting. He goes back and forth with his no and yes answers and the correct answer isn’t generally first. He heard a noise and said, “do you hear it it’s a giant.” He’s so full of words and working on his sentence structure. He asked when he would see his doctor and he then answers himself. The questions are being formed and answered. I went to his IEP -Individualized Education Program meeting today to plan for the year ahead. It’s emotional. I talk with his teacher all the time so technically there are no surprises but it’s still emotional. Plus, the big plus, I wanted to hold him back next year. I also want to cry. It’s a big decision but for him, I think it is the right decision. He’s tiny for his age and the progress he is making will increase by keeping the same plan in place with his teacher. Thankfully the school agreed and it all progressed smoothly. His teacher and his therapists all talked about the progress he has made and the areas they will continue to focus on, and it all made sense to me. I’m truly thankful for how much this group supports and fosters my son’s growth. When he got home from school it luckily stopped raining when he got off the bus. He asked to go bowling but they are generally busy so I told him we could go Friday or Saturday if he wanted since he had therapy tomorrow. Then he asked to go to the depot and look for the overpass but he decided instead he wanted to take a bubble bath and talk about eating. We read together, ate a snack, and then he took his bath. Bathrooms really should be completely waterproof. He was wound up today. He thought it was funny to kick the shower walls and kept splashing all of the water out of the tub. I don’t want him to think he can do something like kick the walls but the more I corrected him the more he kicked them and laughed. He has no concept that his actions result in things being broken or destroyed. Every time he kicked the wall his foot came down on the faucet. I was concerned that he was going to hurt his foot either by kicking the wall or from the faucet. Thankfully he moved forward and stopped. I sat watching bowling with him only he wanted me to watch it from another chair. I was sitting in the wrong spot and I kept telling him I was fine but he wanted me to move. I knew what was going to happen. As soon as I moved he was done watching it and then he wanted me to move so he could sit where I was sitting because he wanted to play on the computer. His nighttime prayer was “Dear God, thank you for Thanksgiving and my friends Mickey Mouse. Amen.” He only got out of bed one time but I heard him several more. I pray he sleeps the night. The plan, the expectations are never as great as the love in my heart for my sweet baby O. He is what matters. Find your joy, share your story, and make today matter. Smiles to all and donut daze!
I'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart.