To say there was excitement about going to the pool is an understatement. The excitement came around two in the morning but Owen was happy it was pool day and there was no stopping the excitement. I tried to convince him to go back to sleep but that wasn’t happening. The decision of do I still take him or do we stay home is always tough for me. He wasn’t exhausted and he was asking every few minutes when we were going. This is also one of those hard things for me. The repetitive words and actions get me stuck in a loop. Answering doesn’t help stop the behavior and ignoring it causes him to spiral in a different direction. We breathe. When it’s four o’clock in the morning and you still have seven hours until it’s pool time that’s “later.” But Owen wants me to say “in a little bit” and if I don’t he will ramp up the asking until I say it. Well, the little bit finally arrived and we were off to the pool. I pointed out to him that we were not in blue pants and I was not in a dress over my swimsuit. I wore black pants and a T-shirt instead. I am trying to get him to understand the connection of being able to wear something different depending on what we do. He had a fabulous time at the pool. We stayed for about an hour. I wanted to get home in plenty of time for him to eat lunch and then get ready for his vision therapy. Convincing him to leave was not easy but I told him if he listened he could come back on Wednesday. He talked about it all the way home and that he wanted to go bowling on Wednesday. He had a calm afternoon and we got ready for his appointment. He did great at his therapy and then we came home. He talked about going bowling again and I was glad. I was fixing our dinner and within five minutes he mentioned going back to school more times than I can remember. That’s his focus but he is counting the days. He knows tomorrow is August and he is ready for the 18th. He walks back and forth over the same section of our floor, stomping in one area and then going right back to it. He likes the sensory input it gives him. He didn’t want to go to bed but he was out once again as soon as he put his head on the pillow. I’m thankful he had so much fun at the pool and that he played his harmonica for me tonight. Sing the song of happiness and let it pull on your heartstrings. Smiles to all and donut daze!
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To quote my friend, “woo hoo.” It was capitalized and had a little extra flair but it captured my feeling exactly. We slept. Owen slept all night and I mostly slept. I’ll take it. The emotional side of not sleeping is almost as hard as the physical side. The week ahead Owen has planned out. Today was church, tomorrow pool and vision therapy, Tuesday bowling, Wednesday back to the pool, Thursday therapy, Friday was not assigned yet, and Saturday grandma. This felt like a huger than huge victory. He planned his days. I pray for the days ahead. I pray that we can go. I pray that they meet his expectations. And I pray that he understands if they don’t. The tv was on and he came around the corner. He was watching something and they started singing Happy Birthday. He wanted it played over and over. He was so happy and then as it was rewinding I sang it. He said, “again.” I asked him if he wanted me to sing or on the tv. He said, “Mommy sing.” I was amazed. He usually doesn’t want me to sing. He went back and forth until we had to get ready for church. All the way to church I talked to him about expectations and how we handle them. I want him to understand that we have to work together and help each other. We must use kindness and grace with each other and also give it to others. We got to church and he had a good time. He didn’t want to ride his bike or get lunch afterwards. Instead, he wanted to drive over a railroad track, look at a school he has never gone to, turn right by a gas station, go see the brown underpass, drive by the windows, turn left at the eagle, look at the air conditioner, stop at the green stop sign, look at the bridge flags, and drive by the fire trucks. I’m sure I’m forgetting something and there were many other things he wanted to do but we came home for lunch. It’s hard to know why he wants to do all of these things but to him, they all have great significance. One day he will be able to explain. Most of the afternoon was calm except when people outside walking were making noise and then he ran to every room making sure they weren’t there and telling them to leave. This took a lot longer than them walking by. I told him that he needed to go to bed and stay in his bed so he could go to the pool tomorrow. He told me again he wanted to sleep on the couch so I made sure he understood. He once again was asleep within minutes of bedtime and I pray we get to go to the pool tomorrow so he can use his “walking feet walking feet to splash in the pool.” I’m thankful he had a good day and he was happy at bedtime. Dream big, share your story, and know that today is your day. Smiles to all and donut daze!
I’m not sure if I should call one o’clock in the morning yesterday or today even though it’s after midnight. Whatever it is called is way too early to truly matter. I couldn’t convince Owen to go back to sleep. He was ready for his day and that was that. He didn’t realize that not sleeping meant that we were staying home. He was sleepwalking all day it seemed even though he was in a good mood and for the most part calm. Anytime he would get anxious he would say, “elephants eat peanuts with Goofy exactly.” It’s one of his go-to phrases and I’ll take it if it helps him. The calm is a good thing. I tried to not rock the boat. I was thankful he had his Friday with his grandma because there was a storm so they didn’t have cable which meant no internet. That would not have made for a great Saturday for him since he loves watching Disney shows and using the tablet. I told him numerous times yesterday when we got home that he wasn’t going to see his grandma today. I wanted to make sure he understood he would be with me. I thought we would go someplace today but I also thought he would sleep later than one in the morning. I’m thankful he was in a good mood. I keep focusing on that. He has been talking about his new harmonica. I love that he knows it is a G tone. He watches videos of cartoons that people will speed up and change to G sharp or major. This is from hearing him request it and my elementary school days of playing the piano. From there my musical talent could be carried in a thimble. I knew music is important though and I wanted him to feel what it does for our souls. When he was a baby I would put one of his hands on my heart and one on my throat or mouth so he could feel the vibrations when I would sing. As the years moved on I put any instrument I could in his hands. I tried to let him lead the show today. He had asked to go bowling but he was extremely sleepy and I wanted to try to keep him calm. His exhaustion would not have gone over well with bowling. He somehow found songs on his tablet that he hadn’t listened to in a very long time. He was very excited about it and kept coming to me to show me his tablet. When it was getting close to bedtime he told me he was going to “go to sleep on the couch bed.” This is one of those things I really would be fine if he go to sleep on the couch except that would start a trend I’m not sure how to handle yet and the dude sleeps like a fish swimming upstream holding a pizza and talking to an octopus. He has a bedrail on both sides of his bed. He asked tonight to take the tent off his bed. I opened the end up and told him I would take it off tomorrow if he decided he wanted it off. I’m praying he does. It is nice but hard to maneuver around. I got him to go to his bed and he was asleep in seconds. I’m praying tonight we get back on schedule. I’m thankful for an overall good day even if exhaustion is winning for both of us. His happy attitude is what makes me smile. Some days dancing in the rain will be the energy you need to see the sun shine ahead. Smiles to all and donut daze!
I think Owen woke up at four. Maybe it was a little earlier but either way, he thankfully was calm. I went with the flow today. I have to remind myself time means nothing to him except when it means everything to him. Depending on how the morning went he was going to spend the afternoon with his grandma so I could go to a meeting. He was happy, hungry, and playful. “One hug,” he yelled out to me when he was sitting on the couch under his blanket and he heard me walk out of the kitchen. It’s become our new thing and I love it. Sometimes he asked for ten hugs or “twenty-one hugs please.” I don’t know how he decides the numbers but he’s all about it. When it’s “one hug” I can see the look in his eyes and I know he wants to be tickled. He laughs before I even tickle his feet. His foot shoots up towards my face and the laughter begins. The laughter is the best. He sat eating his breakfast singing songs in German and Portuguese I think. He may have switched it up at some point but I lose track of all the languages he knows. He doesn’t always saw his words slowly enough or precisely as they are said but it all amazes me what he knows. His words are gifts to me because I know what it took to get to this point. He was playing with his tablet and he brought it to me to show me a guy that was at a train station. He was so happy because the guy was in blue shoes, a blue shirt, and blue jeans. He ran through the house thrilled to find the guy in the video. I asked him what he wanted for breakfast and he said, “waffles please.” I put them on his plate and he said, “the waffles ready let’s eat together.” This is a phrase he probably heard on a video or put together from something he learned at school. I could have even said it but don’t remember. He never forgets though. I told him I was going to tell him a story and he ran to get his books. I was going to tell him that he was going to see his grandma today but I love that he wanted me to read with him. We read numerous books before I told him. I love the moments when he directs the activities. I don’t always get those moments with him so it makes me happy when he initiates them. He was excited to go to Grandma’s house. I told him that since he went today he wasn’t going tomorrow even though it is a possibility he might go. I want him to understand we don’t always have to or get to do exactly the same things on all the same days. He thrives on routine and I would love for every day to be written in stone but that is just not possible. He had a good time with his grandma and when I picked him up we were going to go bowling but a storm was coming. It’s beyond emotional for me. If his pants get wet it can lead to huge meltdowns. Deciding which way to go with this is hard for me. He needs to work through all of this because rain isn’t something that is ever going away but it’s also a very emotional journey that will take time for both of us to learn how to process. We got home and it was raining. I told him he had to get out quickly and run to the house, hoping he would. It took him at least thirty seconds or more to get out of the car. But he did it. And he didn’t scream when he got inside. I have to remember that for the next time to come. I get stuck in a moment as much as he does. The rest of the night went quickly and he was actually plotting his days ahead. That brought cheers from my heart to hear him ask for bowling several times in the following week. Through struggles I learn patience for another day ahead. Autism is as much about how I handle it as it is about Owen having it. Each day we learn, we love, we grow. The laughter is what I hold dear to my heart. Your story is worth being told. Someone will understand and be thankful you told it. Smiles to all and donut daze!
The hardest part is the hardest part. Some days walking through certain moments, feeling like nothing I’ve been through before, even though the same thing happened only a few days, weeks, months, or years ago. I think it’s the expectations of what should, could, would happen that are rough. I dream of those days that it is easier for Owen to grasp and for me to have the knowledge to help him through all of it. I made last night rougher than it should have been by trying to get him to go back to sleep. I keep expecting different results from exactly what I know is going to happen. My heart aches for how hard it is for my sweet baby O. Thursdays are Owen’s favorite days because he gets to go to therapy. And today was going to be even more special because he was getting to go to the pool. But none of that happened. When he gets something on his mind it is very hard for him to not focus on it. He was excited about finally getting to go to the pool that he couldn’t sleep last night and that means I don’t sleep. It was around one and I heard him, not quiet as a mouse this time. I went to him and told him to go back to bed if he wanted to go to the pool in the morning. I thought wow that worked because it took him no time and he put that tablet down and was in bed. From there he was up and screaming at me every twenty minutes. I gave up trying to sleep and he kept asking when we were going. Some days I can handle no sleep and function. Today was not one of them. Sitting was about all I could do. He wanted to go but he was so sleepy and cranky that even if I was half awake it would be hard to take him. I canceled his therapy because I knew he wouldn’t be able to focus on it either. This just breaks my heart. So I tried to keep him entertained. I told him I was sick because that is what he can process. He was kind and kept telling me to go to his doctor. As the day wore on he was calmer when he realized we weren’t going anywhere. I’m thankful that he found his calm. He fell asleep within minutes of going to bed. We have plans tomorrow but I’m not even thinking about them. I’m praying for sleep for both of us especially since he doesn’t know we are doing anything. I struggle with telling him about our activities because it truly is hard for him to process. I’m thankful for his kind heart and his amazing smile. Believe in the journey and make sure to know that you can do everything you set your mind to. Smiles to all and donut daze!
Quiet as a mouse. I’ll go with that. From the drain on his tablet’s battery, I would have to say Owen was awake around four-ish or three-ish. Either way, I was thankful he found his tablet and went back to his bedroom. It was again one of those moments when I felt like I woke up hearing something, but I wasn’t sure what it was. He was excited to go to his therapy. When we left for his appointment I said to him “are you ready for an adventure?” He said, “no venture today no adventure in wonderland no venture today.” He has a hard time processing when it is something I am referencing as a moment in time or that we are going on a true adventure. He had a good therapy session and then when we left, I asked him what he wanted to do. I told him we could either go bowling or ride his bike. I am trying to provide activities for him that he will want to do and make him select the activity. At first, he said no and then he said he would go bowling. He had an incredible time bowling and did a great job. As it got close to the end of the game, he kept asking for more bowling. It felt like he was in the moment when we are bowling. Sometimes it’s hard for him because he’s focusing on the future. I told him we could come back on Friday if he wanted or another day. When we left, I tried to take him to see the pool we are going to tomorrow, but he got anxious and didn’t want to see the park. This is a park that we have been to before to ride his bike and once he saw where we were, he didn’t want to ride his bike since he had just gone bowling. He didn’t realize this park had a pool. He screamed, so I headed home. I asked him if there was anywhere else he wanted to do before we got home and he kept repeating “the windows.” I asked him if there was any place else he wanted to before we got home he said, “no the windows.” It’s hard for him to understand that he can request more than one thing at a time. The closer we got to the windows he started asking for more things. I try to get him to understand that we already talked about it and he had decided he only wanted to see the windows. I’m trying to find ways for him to connect to activities. When we got home he was very calm but wanted to focus on going to the pool and therapy tomorrow. He played his new harmonica for a while and I’m amazed at his progress. I told him that if he wanted to go he had to keep the volume of his tablet down and for the rest of the night he listened. I hope this works again. Sleep was not far off for him and he was focused on what he wanted to do tomorrow. I’m thankful for his laughter and his excitement for his days. Find what makes you happy and make sure to include the little things. Smiles to all and donut daze!
“Tuesday be with mommy tomorrow” came and went with some fanfare, some. It was well after five or maybe it sounds like more sleep if I say it was getting closer to six when Owen woke up. I was trying to decide if I heard him but we woke about the same time. He wanted to stay home until I mentioned the four-letter word that gets attention no matter what he is doing unless he is focused on something else he needs to do for his routine. I said, “do you want to go to the pool” before I figured this whole thing out and where we were going. All my first choices were taken. One wasn’t open on Tuesdays, another one had a problem with their pump and didn’t post it, and the other one was too far away for the timeframe we were working with. But I suppose everything happens for a reason because my sweet baby O wore his “swimming suit” all day long. We tried to go to a splash park near us and their pump was broken. We didn’t have time to go to another pool because our friend was coming to spend time with Owen. Plus, it was later in the day and getting hotter. He handled it well though. I told him we could go tomorrow not thinking about a therapy appointment he has tomorrow. All the days blend together. He handles this well though because he loves going to see the doctor and therapist. Depending on how busy the pool is we might try to go after his appointment but should be going with friends on Thursday. When we got home Owen’s focus turned to waiting for our friend. I used this to our advantage because he was then not focused on changing to blue jeans or as he calls them “blue pants.” I wanted him to understand that people can wear shorts or a dress like I did to cover up my swimsuit. When we were coming home I explained that other people may be wearing shorts so they could go to the pool just like him. I’m trying any way I can to make those connections. I was thankful he was at least thinking about it. I texted our friend to let her know that he was in his swimsuit but it wasn’t wet. She completely understood exactly what was happening. He was happy to see her but he also had a hard time with it. Once they started their trek to the library he was doing better. It’s a lot for him to process. They read some books and worked on creating a couple of little egg aliens. I like all the activities he is involved in. When they came back he told me the books he read and about his craft. I love all the dialogue he is starting to have. The more references he can have to conversation skills the more he can comprehend it all. The rest of the night went quickly. He played his harmonica and he painted with me. He didn’t want to go to sleep but I let him stay up a little later hoping that it helps adjust his sleep schedule a little. He’s excited about the next few days and so am I. I’m thankful for all the beautiful music he is making. Be brave in your soul and strong in your heart. Make your dreams come true by being who you truly are. Smiles to all and donut daze!
I was about to tell myself to go back to sleep and then I listened again. It was a faint sound of Owen’s tablet. It was after five and he was ready to start his day but at least he was doing it quietly. I came around the corner and I said good morning as he walked towards me. I told him not to stop me because I truly needed that forward progress to get me to the bathroom. He kept coming anyways. I told him to give mommy just a minute and thankfully he let me continue. My bladder is no spring chicken anymore and I needed to go so I could drink my pot of coffee. As soon as I came out of the bathroom he started going through the motions of the day. “Tuesday be with mommy tomorrow,” he said over and over and it was our theme for the day. The constant constant is rough. He can’t regulate his thoughts and he is constantly going. I had an appointment, but I hadn’t told Owen that he was going to see his grandma today. I didn’t want to tell him yesterday because it may have caused him to not sleep. He was excited once I told him and we got ready to go. Sometimes when I tell him something it still takes him a while to process it, and getting ready was not exactly a quick trip. Once we got out the door, we were on a mission. He had found a building on his maps app. “There’s a bug,” he said. It’s truly amazing all of the details he catches. I knew we would be passing it on the way to see his grandma. The building has signs out front and it tells about each thing they do. One of the signs has a big bug on it. I showed him the building and he was more concerned about getting to grandma’s house. When we got there, he was ready to go home. I went to my appointment and I came back later. I had told him yesterday that we were going to go bowling or ride his bike today and he when I picked him up from his grandma’s we went bowling. He kept saying Tuesday be with mommy tomorrow. I’m not sure how to change this so that it helps us move through the day. He is always trying to make sure of what his schedule is, but he will not use a schedule or any other form of notifications. He had a great time while we were bowling but that phrase kept running through his mind. He would ask me every few minutes and he was standing there bowling and talking about being with mommy tomorrow. He has an incredibly hard time focusing on fun or the moment at hand. it is one of the things that we are working on this summer. It is so hard to motivate myself to go outside or for Owen to get ready and go because of our emotions. I know it will be hard on him. It’s an emotional journey full of Tuesdays when he wants me to be with him. Once we got home, he still had the same thing running through his mind but at least he was able to do other activities like work on his tablet and sing with mommy. The night kept restarting. Every time I thought he was done he was starting again with Tuesday be with mommy tomorrow. Every day my heart hopes that tomorrow is the day that is easier for my son and I think sleep is finally won for my baby and I hope that he sleeps the rest of the night. Our journey is not always easy to explain, but the loves sure is. His big cheeky grin is what got me through the day. Find what makes you happy and share your journey. Smiles to all and donut daze!
If I had slept later Owen probably would have slept later but it was almost six when he came to not greet me. He walked right past the bathroom, right past my open arms thinking I was going to get “one hug,” and right to the couch with his tablet. I said good morning and I think he realized the morning had started. I mentioned the bathroom at about the same time he started walking towards it. When he came out I got my “good morning mommy” and then he said, “bless you.” I talked to him about bodily functions. I want him to understand that if someone sneezes we acknowledge it. I’m not quite sure why the sneeze got this distinction but there it is. I’m sure it is related to a cultural moment but I haven’t researched the historical context. His teeth were bothering him or more likely it was his “Spider-Man tooth” that is loose. He felt very focused this morning but it was focused on all the things we couldn’t control. School is not until August, the tooth that isn't coming out until it’s ready, and seeing the people he wanted to see kept running through the conversation we weren’t having. Instead of talking about it, the repetitive words were what he continued to do. He wanted to fix his robot BeatBo and help with the screwdriver. He did all the steps with me. He ran off and was so happy. His happiness continued when we got to church and some of his favorite people were back from vacation. When we left he didn’t want to do anything except go by his windows until we got home and then he wanted to go everywhere. He was not happy we weren’t going. I try to explain to him that I have to know before we are home and he has to give mommy patience without the screaming. I know it’s hard for him to understand but it is something we are working on. The afternoon quickly turned into the evening. He played his harmonica for me and is truly starting to process how it works. His pure joy from asking Alexa to say “hippopotamus hippopotamus hippopotamus in Arabic” is beyond heartwarming. He moved on to asking Alexa to say it in numerous other languages. Next came “giraffe,” “wiggle wiggle wiggle in Italian,” “buffalo buffalo buffalo in German Arabic,” and on and on and on eventually getting to “bear bear bear bear bear in Arabic.” I am constantly wondering how many words he knows in other languages. I’m beyond amazed at his knowledge. My emotions ruled my emotions. When I thought I was through one I would start crying about something else and then praying in between. Owen said, “no sleep today” as he headed to bed, and within minutes I retracted the “no” for him because he was out. Find what does your heart good and share the wonder with others. Smiles to all and donut daze!
I think I woke to something about one speckled frog jumping and then I tried to decide if I was really awake. Sometimes I think I hear these things in my sleep. Owen listens to so many different things that I think I dream of this in my sleep, but there it went again with more speckled frogs. I think he restarted the song. Either way, I was awake now. I think it was before five but maybe it was earlier. When it’s that early I don’t always put my glasses on. I try to change it up with my glasses. Not so much because I don’t want to see the clock but because Owen struggled for years with my glasses. If they were not on my face he would scream. Also, add if they were too low on my nose, crooked, or anything else besides directly on my nose it was screams or meltdowns. These moments live in the shadows of my memories because I have to keep him moving forward. It took many years to build him up to the point where he was not upset if my glasses were off, so now I focus on that with him. The morning went quickly. He sang in all the languages he could find. Then he decided to use his backup tablet at the same time he was using his regular tablet so he wasn’t happy when they were both out of battery. I told him that I wasn’t plugging them in right away. I’m trying to get him to understand he needs to leave one plugged in at all times if he wants one. He used the other tablet that he likes to talk to Alexa with. The backup to the backup. He’s had it a long time but thankfully it’s still holding on. I took him to my mom’s for a while and when I picked him up he was wanting to talk about all of the days ahead. He kept sitting on my lap because he can pull my hair easier while he hugs me. He doesn’t pull it hard but he knows I don’t like it. We left there and he wanted to go see specific things on the way home but screamed all of the wrong direction. It took a bit to convince him to get out of the car and into the house but we got there. He wanted to know when we were leaving for church and why we hadn’t left yet. He was ready. He was calm until it was bedtime and then he wanted to talk about church and for me to put chocolate milk in his cup. Even if he isn’t thirsty he wants a drink in his cup and food on his plate. That is how he processes it. Once he got in bed he was out quick. He will be excited our friends are back tomorrow and he will be happy to see them. His laughter is my joy. In moments of chaos stand still and know that you can do it. Breathe and move forward. Smiles to all and donut daze!
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AuthorI'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. Archives
September 2024
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