I have to say it was nice for us to sleep to the glorious time of six in the morning. The morning felt very random. Owen was all over the map. Not even an inch from my nose he kept repeating over and over “church in a little bit.” If I ignore the behavior he screams and screams. If I answer the behavior it gets repeated over and over. If I cry he asks me if I want a hug and walks away before he gives me one. There are answers to how I should react to these behaviors but exhaustion wins every time. He wanted to discuss yesterday, tomorrow, and today. Technically it was the whole week ahead. He immediately asked for waffles when he first woke up. I fixed them and then he walked away from his plate. He had eaten the dry cereal I had given him and he doesn’t like his plate to be empty so he requested the waffles. As the morning went on he ate them and then asked for two more. He didn’t eat those until right before we went to church but he ate them all. He was excited about going to church but he was now processing about the bus on Monday. Keeping him on track is hard to do. He gets the next event in his mind before the one that is taking place is even finished or as soon as it’s finished he wants to fill in the blanks for the days ahead. If I mention too many days ahead it sends him into a complete meltdown. He did great at church and was thrilled they had a tv on a stand in the lobby. He kept walking past it and then staring under it to see the shadows. He even made his way into a meeting to say hi to everyone before we went outside. He wanted to ride his bike again and we had just enough time before the rain came. He is doing amazing on his bike and starting to turn really easily now. We went to get his requested chicken nuggets and a cheeseburger before we headed by his beloved windows and then home. He ate most of his lunch and watched a lot of videos on his computer. I love that he is wanting to dance more when he is watching the videos. His body awareness is increasing and he can do more activities. When our internet went out I heard my words coming out of his mouth. “Give it a second,” he said. I always tell him it will come back on, to give it a second. The night went quickly and bedtime was met with him coming to me numerous times to talk to me about the fact that he went to the dentist to count his teeth. I’m thankful for his growth and I know he will keep soaring to new heights. Never give up on the hope for tomorrow. Smiles to all and donut daze!
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Some days all I’m trying to do is keep it together. Today was one of those days. Owen woke with a purpose and that purpose was “bowling bowling where’s my tablet please bowling bowling.” I heard him in his room talking and it wasn’t long until he was around the corner to me. And that was at five in the morning. He wants me to always answer “in a little bit.” If I say “later” that sends him into a tailspin thinking we aren’t going. And five in the morning until one in the afternoon when the bowling alley opens is a long time for it to be a little bit. Owen does not let me forget what he wants to do. From five o’clock in the morning until after noon when I told him we were getting dressed to go he asked every few minutes when we were leaving. At one o’clock only one of us was dressed and the other one was sitting at their computer yelling to go bowling but wouldn’t put the pants on that were right next to him. There are many times he can’t process getting ready to go. He wants to go, and he wants to talk about going, but then when it is the actual steps happening this is when it is hard. We left about an hour later than I planned but we were on our way. I knew going to the other bowling alley last week would throw a wrench in our adventures forward but I also know I have to push both of us to explore new places. He wanted to go to the “little bowling” alley until he remembered we could go to the “big bowling” alley. He had started calling the “little bowling” alley that before we went back to the other one and they are about the same size so I am not sure why he chose that name. Once we got inside he had so much fun and loved watching others play. When we left there we went to the “depot three times” and the “loopedy loop one times.” Once we left there we went to the “little park” but there were people playing basketball so we headed to our church parking lot so he could still ride his bike. This also upset him at first because he wanted to go to the park and going to our church on random days makes him think he is not going on Sundays. We got there and it was overcast. After a few minutes on his bike, we both felt the raindrops. I said a few extra little prayers as each drop came down. I needed this to be a learning experience and not a meltdown. He started looking more at my pants and his pants but the ride was more important. I thanked God a little more. I knew that we should still get ready to leave but I didn’t want to rush him either. I told him we would leave soon. I was so thankful he was able to ride a little longer and then get in the car without a huge meltdown. On the way home he wanted to go see the “brown underpass.” This was a new one to me. I guess that is for another adventure. The rest of the night was up and down and “church church church” was on his mind. Autism is as much about how I handle it as it is about Owen having it. My emotions were right there on my sleeve today. He got up numerous times after he went to bed because he heard me move and he wanted me to not move. I tried not to cry until he was asleep but I can only imagine how hard it is for him. I hold on to our rain victory and I watched him get excited when he was dancing with a video. He said, “I dance” and jumped up and down. That is years in the making and a lot of moving parts to get there. Be still in the moments of chaos and rest in your soul. This is where your strength will come from. Smiles to all and donut daze!
It’s going to be a long couple of weeks until Owen’s tooth is out and the other one comes in. Every part of this sends him into sensory overload. And it has him asking the “pirate tooth fairy” for a new hat, a lollipop, and coins in exchange for his tooth. I can tell everything is louder to him and vibrant. His body language completely changed and his screams become more guttural. And tears flood my eyes more. His repetitive behaviors become repetitive and the intensity in everything he does intensifies. This is where I sit in my own moments of reflection. Last night between his allergies, teeth, and the rain we were up by three. I think it was earlier than that but I tried to not focus on it. I lost track of how many times he’s asked me to turn off the rain. I can’t even begin to imagine how I tell him there’s no stopping the rain as much as I would like to. Thankfully when it was time to go out to the bus it had stopped raining. He immediately asked about our neighbor and then ran off to look for the bus. He went walking around the parking lot and it’s like an intricate dance of movements. His body moves crouches forward and his hands move up towards his body with his wrists out. His steps become very deliberate like he is making waves on the concrete with each step. After he walked like that for a few seconds his shoes caught his eye and he bent down to pick up his pant leg. He went back and forth between pulling them up and pushing them down over his shoes. He quickly stood back up when he heard a noise and watched for the bus again. It wasn’t long until he was off for the day. He came home and we were in for the night. I was fine with that because exhaustion was winning. He still was in high sensory demand and wanted to sit squished up against me. Occasionally he would run to the other room or go to his computer. He didn’t eat as much for dinner but ate a big snack. He played in his room some and we read together. Even when I’m not looking directly at him I’m listening for his footsteps and movements. I can hear him move through the house with every creak of the floor. It was not hard to convince him it was bedtime or maybe that was me. I’m smiling through the rain. I reflect on the victories and remember he is my miracle. Continue to dream the incredible dream and remember you can make it happen. Smiles to all and donut daze!
Sometimes the door feels slammed before the knocking begins. Owen likes doors knocked and windows closed unless he doesn’t want them knocked and he doesn’t want them closed. And these rules will apply depending on location and who he is with unless they don’t. Allergies and teeth have not been kind to Owen the last couple of days. He has one tooth coming in and one that is loose. He was up by three in the morning then add in all the blooming flowers and he was having a time of it. He was in a good mood though. He wanted back to our morning routine but I convinced him our new routine was fine. I created a blanket fort for us on the couch and he loved it. He once again turned on the lights and started giving me a breakdown of when he would get ready. He tends to give himself less time than he has. He will say two minutes and he has five minutes or if you give him two options he takes the one with less time. I can tell he is starting to grasp how a digital clock works though. He doesn’t understand the actual time but for someone that can’t read time, he probably has a better sense of when things are happening than I do. I love his enthusiasm for the bus. He gets so excited when he sees it coming around the corner. He watches it over the buildings to see how it’s progressing and then when it gets to our corner he comes running towards me. I brace for impact. He either runs to me and then gives me a huge hug or past me to get in his spot to wait for the doors to open on the bus. Either way, his smile is incredible. He says, “mommy can go on the bus” knowing that I will tell him I can’t go with him on the bus to school and he laughs harder. Off they went. I picked him up from school for his therapy and his teacher told me he did amazing with his testing, especially in the science category. My boy knows science. His mind is so fascinating. He amazes me with how much he knows and when he can understand how to articulate it and make the connections to the process it will be fascinating to see what he shares. When we got to therapy I went in with him because I knew he was tired and he asked me to go with him. I’m trying to let him go more on his own but that seems to not be happening as much yet. I like him to have the opportunity to go without me and I like to go so I can see what exercises they are working on and I can follow through at home with him. When we got home we had dinner and we played some games. When it was bedtime he talked himself to sleep. “Duck duck gorilla f is for fish ga ga gorilla g is for gorilla,” he said as he was falling to sleep. He went on after that going through all the letters. I think I was falling asleep quicker than he was at this point. I pray he sleeps better tonight. My emotions get me some days and the rollercoaster ride is rollercoastery but today I am thankful for so much progress from my sweet baby O. Never give up on the process of the progress. Every day can be a challenge but we grow with those moments and it turns into the progress we want. Smiles to all and donut daze!
Adapting sometimes is one of the hardest things we have to do. Change has always been super hard for me except when I wanted the change and then it was only kinda hard on me. Owen is the same way or more so. We are having some work done on our house. This means we don’t get to have everything in its place because everything is all over the place. This is hard. This has changed our morning routine. And this will go on for a few days. The only constant thing is change. I don’t know how you ever get used to it. We sat with our adapted morning routine and he did fine with it once the first few bumps were over. We did our countdown and then he was ready to get out to the bus. As soon as it was time he turned the lights right on without hesitation and we were out the door in no time. When we wait for the bus I have him do different exercises with me. I hadn't asked him to touch his toes for a while. He at first did what he usually does and picked up his foot to his hand. Then I told him to bend in the middle and touch his toes. He said, “bend right here” and touched his toes. It's clicked and I was jumping for joy. I asked him to do it one more time and he did it again. After that, he ran to watch for the bus. It wasn’t long and he was off to see his beloved teacher. It’s a whirlwind in the mornings. Some days are harder than others and chaos makes it harder. The stress of stress is stressful. When he came home I wasn’t sure what he would want to do. He talked about so many things yesterday. When he got off the bus he said he wanted to go to the depot and then to ride his bike. I asked him if he wanted to go bowling and he said that he wanted to ride his bike so after his snack we were off and biking. We first drove by the depot three times as he requested and then we went to the “little park” to ride his bike and play on the playground. He amazes me how well he is doing with his bike. It also amazes me that he rides without always looking forward. I tell him he needs to watch his surroundings but it’s amazing how well he does. When we left there we came home, driving by the windows that he loves. He ate most of his dinner and wanted to take a bath but as soon as I told him he couldn’t take his tablet in the bath he said, “no.” I told him he had to put his tablet down and he said “bowling.” He will randomly answer like this when he doesn’t know what else to say. I’m thankful for him touching his toes because this touched my heart. Believe in miracles. The littlest of things are the biggest of victories. Smiles to all and donut daze!
The nights have been better for Owen but for me not so much. I think, I rethink, I overthink, and then I think about all the things I need to think about again. Owen needs help with everyday moments. He can pull his shirt on and his pants but generally they are backwards or even inside out. He’s doing great about his socks and shoes but this too can cause problems. If the tongue folds into his shoe or the velcro comes out of the holder it causes him to scream and get upset. Buttons, snaps, and zippers are all still in the learning phase as well. We got ready for the bus and he saw that I had a dot of water on my pants from helping him brush his teeth. We had to quickly move forward. We got outside and he kept looking at how his pants were covering his shoes. He said, “help with the pants” as he was trying to move how they fell on his shoes. He lifted his pants back up and looked under his pants like he wanted to make sure his legs hadn’t disappeared. The longer his pants are the more problems they create. People often look at Owen and don’t see autism. That is a good thing but then they also question why he uses training wheels on his bike or an armband when we go bowling. Questions are always fine but the answers are not always easy.What does autism look like? What does a disability look like? How do you explain in a quick exchange what is going on when there is no quick explanation? If you look at me and I don’t move you don’t see the fact that I have hemihypertrophy -the right side of my body is larger than my left, arthritis, scoliosis, Hashimoto's, and walk as slow as molasses with a huge limp but I keep moving forward. I’m trying to work through it all and gain strength but this momma is tired. We all got something but it’s how we embrace who we are that makes us who we are. Kindness and grace are two of the most important lessons I try to teach Owen. We live, we learn, we grow, and throw lots of love in there. Nothing defines us until we let it define us. We can overcome the obstacles that are set in front of us and believe me I have to convince myself of this every day but we can do it. Sometimes I’m overwhelmed by all the sounds around me and want the world to be quiet for a moment. Not all of them bother him but I never know when the screams will erupt from the noises around me. I sit on pins and needles wondering what will happen next. When Owen came home from school he talked about all the places he wanted to go but they were all the places he wanted to go tomorrow so we shall see what happens tomorrow. He was calm most of the night. He played his harmonica and drum and then he read a book with me. In his prayer tonight he was thankful for his teacher and aides. I love how his daily prayer is building and growing like he is. A soul is broken by the memories they walked through but refreshed by the sunshine in the days ahead. Smiles to all and donut daze!
Some days I wake up a thousand times and try to figure out what day of the week it really is. Today was one of those days. I woke up before Owen and he wasn’t far behind. He immediately went through all the questions he had for me. He seemed tired and coughed once but there were no other signs. He wanted to go to school and I saw no reason not to send him. He was in a good mood because he knew he was going to ride the bus and see his teacher. Plus, he knew he was going to his vision therapy session when he came home. We went outside to wait for the bus and he started talking about his day. He ran off and I knew he was going to the stop sign. He looked back and acted like he was going towards the road. He loves to watch my reactions and see what I’ll tell him. A look was all I needed to give him but I told him not to go past the stop sign. My eyes filled with tears because I want him to understand how important it is that he pays attention to his surroundings. How do you even explain streets and traffic? It’s always been a constant concern for me. My thoughts flowed into wondering if he knows that I wish I could give him the world. The bus came and as soon as he saw it he started shouting out directions to get it to our house. They were incorrect but he still told them to me. He ran to his spot and then onto the bus. The bus driver told me he thought he knew which overpass it was that he always wants to go to. It makes sense now because you can only get to it from one direction so he gets upset when we don’t go that way coming home but we can’t since it’s one way in the opposite direction. I didn’t even think of it as the overpass because of how the road goes. I’m thankful for all of these people that pay attention to my son’s words and help me figure out what he wants. When I walked back inside I saw the monkey was under the table. I’m not quite sure why some days it needs to be under the table and other days it needs to be with the game board. When he came home he was excited about going to therapy. He sat watching his computer and tablet back and forth until it was time to go. Pooh was on one and he was singing songs with his tablet. He ate his snack and we were off to his therapy. He did pretty well but he only wanted to do some of the exercises and he was more concerned about restarting the computer. Some days it is hard for him to focus but he was able to do some of the exercises. When we got home he was happy and ate most of his dinner. His focus isn’t always on the follow through but I know he processes more than he is doing in the steps. The night felt like it was all blending together. I’m thankful he didn’t get sick and I’m glad he got to do the activities he likes to do. The biggest victories come from the heartstrings that are part of the beautiful song of life. Smiles to all and donut daze!
To say you never know where some days will take you is the statement for the day and we didn’t even leave the house. When Owen woke he started coughing. He slept until six and when he got up he immediately came to me. He said all of the things like he was keeping track with a metronome. “Good morning mommy” flowed into “need a hug” and then “church,” “how are you,” and finally to the one he was wanting to say “tablet tablet.” From there a little more coughing and me trying to take it all in. I asked him, knowing he hadn’t, but wanted to see what he would say, “did you go to the bathroom?” And off he ran. I like that he went through all the conversations first. I couldn’t decide if the coughing was allergy-related or something else. I, being extra cautious took his temperature and it was slightly elevated. I decided we should stay home from church. He was very calm about it. He wanted to go but he didn’t have a meltdown when I told him we weren’t going. He saw my computer and there were animals on it. He said, “impala like an antelope.” He knows what so many animals look like it’s incredible. He spent a lot of time on his computer watching Disney shows and singing songs with the Mickey Mouse Clubhouse gang. He played with his toys and he wanted to show me his BeatBo robot. He was doing his review of BeatBo and he came to get me. He said, “take your hand mommy” and walked me to his room. He then went through the review of his robot. He talked about the robot's face and how the ears were on. He asked me to get the “duck nose” like he sees it at vision therapy. I need to load it onto his computer and put it in a file for him so that he’ll be able to see it. He wanted to take a bath early on in the day. I’m always amused that he wants to drink bathwater, but not regular water. By mid-day, his cough was pretty much gone, and his fever was still only slightly above normal temperature. And by the end of the day, I wondered if there was something wrong with my thermometer or if it ran through his system quickly. He seemed like he wanted to sit a lot in the morning, but by evening he was running all over the place. I tried to prepare him that depending on how he felt tomorrow, he may not get to go to school. Unless something changes overnight he most likely should be able to go to school though. I never know if it’s good to prepare him or to let him know when it’s happening. He ate all day long and was in a great mood for most of it. I’m always happy when my Sweet Baby O wants to include me in his learning process. The joy is in the little things. Find your joy, share your smile, and make a difference in our world. Smiles to all and donut daze!
The noises of the earth are louder than the roar of the lion. I’m often amazed at how many sounds the world truly makes. If you sit for a moment even inside your house there are probably at least five noises that are surrounding you and you aren’t even thinking about them. The lights, the refrigerator, the air conditioner, the doors squeaking, the floors creaking, and the list goes on and on. Owen hears them all. He often wants me to turn off noises that there are no ways for me to turn off. In our neighborhood every spring I wait for the wind chimes to come back out. “Hear it,” he says when he can’t drown out one sound with another. The wind chimes, the rain, and the traffic, all have been too much for him at one time or another. How do I even begin to explain I can’t make the rain stop beating down on our roof or the washing machine to not shake the house? I pray each day for the world to be calm for my son. Thankfully he slept until almost six. He was ready to go bowling as soon as he woke up. I told him we would go later. He needed me to say we would go “in a little bit.” He needs those words. I’m trying not to let the tears flow down my cheeks. He clings to my words for the direction of our day and “later” is not close to “in a little bit.” When it was finally time to head to bowling he wasn’t in a hurry but wanted to go. When we got to the bowling alley they were closed. I don’t know if they started opening later or if it was another reason but this upset him. He didn’t understand why and it is hard to explain. I took him by the depot and then we went to the park so he could ride his bike and play on the playground. He is becoming more adventurous with riding his bike and he can make tighter turns now. I’m thankful for his progress. After we left the park I couldn’t decide if I should try to take him to the other bowling alley. Change is not easy and when we go to someplace that we usually don’t go to it is hard. We started at this bowling alley but they closed and reopened after remolding and new ownership. I have to push myself to do these steps. You never know how people will handle it. So many emotions are running through my head to even explain how it went. I want to say we got through it but he had a lot of fun. I want to say it was good and bad. I want to say I wish our regular bowling alley would have been open. But I will say even though it’s hard we have to do these types of activities outside both our boundaries. We got home and the night was rollercoastery. Bath time was the talk of the night and it didn’t come soon enough for him. I think it is part of his sensory needs right now. He wanted to stick his toes on his teeth and he got mad that he couldn’t take off the booboo on his knee. I hold onto the happiness that washed across his face when the train came by when he was riding his bike. Let joy take away the sorrow that clings to your heart and watch the change it makes. Smiles to all and donut daze!
It felt like a full day before it really even got started and then it turned out to be a really full day. I’m glad we have been on a sleeping trend. We both have needed it desperately. Owen woke once again on high alert with sensory input on his mind. We went through our usual steps and when he sat with me in the “white bed” he wanted to push his head into me. This usually means he is in a growing trend when he pushes his head like this on me. I think it might also have to do with his loose tooth. When we got outside he was excited about his day. He couldn’t wait until the bus got here. He ran to the stop sign so he could watch for the bus. He walked back to me but it was his sensory walk. He walks on the ball of his feet kind of crouched over with his shoulders to his ears and his hands raised. He almost looks like a bear walking on two legs. When a plane flew over I wanted him to look at the contrail clouds. I started telling him about them and how they were made. He wanted nothing to do with that and instead told me all about the planets and moons. Sometimes when he doesn’t want to listen he is either wanting to do something else like concentrate on his bus coming or he already knows about the clouds and that isn’t something he wants to think about. When he saw his bus he was so happy. When the bus came around the corner he came at me like he was a linebacker and give me a big old hug. He jumped up and down and ran to stand at his spot. I love how excited he gets for his day. His usual Friday night stance happened. He didn’t want to go anywhere but sure wanted to plan his tomorrow. He ate a big dinner but he always gets upset when I get my drink. If he thinks I’m getting anything different than what he is supposed to be having he can’t handle it. I try to explain that this is mommy’s food, not his and it can be different. I was drinking cranberry juice instead of his chocolate milk. It happens every night. He doesn’t get upset when I drink my coffee or hot tea and I think it is because I use a mug for that instead of the same type of cup I use for him. I might have to start drinking my juice in my coffee mug. He was in bed telling himself a story or reciting facts not sure which. “It’s a bug like an insect,” he said and was out after a few more references. I’m thankful he was mostly calm and in a good mood. His smile is what I hold dear to my heart. Remember the song that is sung with glory will bring joy to your soul. 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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