Owen slept until five before he came to find me. He then slept for about thirty more minutes. I’ll take it. Our sleep has been even more off if that’s even possible. He seems very agitated at night. I can’t decide if the tent over his bed is a good idea or not. He can’t see out through it so the noises seem like they feel even more amplified to him. The wind blows he sits up, the air conditioner kicks on he sits up, a bird chirps, a dog barks, a car goes by, he automatically sits up. He was yawning when he got in bed and it still took him two hours to fall asleep. This morning he was so excited about his day. He was going to school and he had therapy, one happy camper. He was also very talkative. Most of what he was saying was from videos or apps he plays. “What comes in spring flowers”, he said, stating the question and answering it all at the same time. When it was time to get ready he couldn’t wait to get outside to wait on the bus. However, he only wanted to wear blue jeans. I wanted him to wear his camo pants but that was a big “nopedy nope nope nope”. He took them off quickly and made sure I knew he was waiting for blue jeans. I helped him put them on and then he was ready to go. He still struggles with putting clothing on. Sometimes he will get his shirt on or pull up his pants and other times it seems very daunting to him. And he doesn’t understand the front or the back of his clothes, or even if something is inside out. When I picked him up from school for therapy he was all smiles. His therapist told me he had a pretty good day. I think sometimes he doesn’t always understand the objectives of therapy but at least I can tell he is learning. When we left it was raining. And my boy will tell you “I love puddles”. He doesn’t always say his words referring to himself so when he says something like that it’s pretty cool in my book. Well, puddles he did love. I had the umbrella over us, thinking about keeping us dry but Owen wanted to lay down in the puddles. Since I was holding his hand he instead jumped in all of them. I wish he had his rain boots. I would have loved to see what he thought. Tomorrow when he gets home from school we go get his new glasses. The next adventure awaits. His smile is my joy and I’m thankful to be so blessed by him. Find your joy, share your heart, and let the world see you smile. Smiles to all and donut daze!
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I keep thinking about how this new routine will not be routine for long. June is going to fly by and then here come July. No “camp” in July so we will have to create a new routine to keep us busy. When Owen got off the bus he immediately started talking about going to school the next day and pretty much continued to talk about it all night. He likes his teacher and seems to be making progress at school. He was sleepy when he went to bed tonight but still, it took him almost three hours to fall asleep. Well, fall asleep the final time. I’ve tried early to bed, late to bed, and everything in between and it is different every single night. He kept falling asleep and then he would jet straight up from his sleeping position, again hearing every noise in our house. The wind blows and the house makes a noise, and he is awoken. I try not to overthink it but I wish I could create a soundproof room for him, one day. Even the light shadows play a part in his sleeping. His room is brown with blackout curtains. He sleeps with a tent canopy over his bed and that still doesn’t seem to be calm enough. We went to one of our therapy sessions tonight. It didn’t go according to plan. He expects to have everything go in the order he wants it to. And it is not easy for him to comprehend when it doesn’t. I try to explain to him that sometimes we have to wait our turn but truly what does our turn even mean. He’ll yell out “we have to wait our turn” but when he is saying it he is generally already heading towards a meltdown. Plus, right now with everything being topsy turvy the not having his routine plays a bigger role in moments like these. When we left he wanted to get “chicken nuggets french fries apple juice cheeseburger and a toy” changing it up a little but with his words. He ate most of it when we got home, only leaving a few bites of his cheeseburger. He knows what the rest of his schedule will be for the week but trying to explain to him that he gets his glasses on Friday has not gone over well yet. “No glasses today”, he says. I think this is mostly because he needs to keep to the routine and places he understands for his schedule. I’m hopeful that once he realizes he can see better with the glasses that he will want to wear them. One day at a time I remind myself, praying a lot and knowing that we truly do have to take it one day at a time. He has so many things to process right now that it is hard for him to comprehend them all. We laughed a lot tonight in between the struggles and I know we both needed it. Find your inspiration and let the joy seep into your heart. Smiles to all and donut daze!
Owen woke screaming “straight”. I was hoping and praying he wouldn’t keep screaming. I had been awake for what seemed the twentieth time at this point so his screams didn’t wake me but it sure startled me. I had a feeling it was either me or the bus that didn’t go the direction he wanted in his dream and that was what he was screaming about. I think he may have startled himself because he quickly moved to my arms. He started talking about taking the bus and seeing his teacher. He struggles with saying her name and then back to his previous teacher. He won’t see her until August. I go over this with him several times a night, asking him when he will see each of them. When he gets on the bus I always stand next to it, signing “I love you”. The bus driver told me he could see me and was saying “I love you”. It made my heart smile. I was glad he could see me. He wanted to read The Very Hungry Caterpillar with me tonight. He got the book and sat down next to me. I love when he wants to read. He knows most of his books by heart but he still goes through them with me page by page. He kept trying to download an app and then asked for help. I’m not sure how come he needed this app but he has tried to do it for several days. I asked him what he wanted it for and he said so he “could make phone call”. I asked him who he wanted to call and he said, “grandma”. I told him we didn’t have to have the app that we could call her anytime. He said, “no”. He has a hard time processing phone calls and live videos of people he knows. He will scream or get very agitated about them. It’s hard to explain to him why someone is not here yet talking to him. He kept waking himself up before he was completely asleep, talking about his tent and the people he would see tomorrow. Every noise travels through our house waking him quickly. Countless times I thought he was asleep only for him to pop up and start yelling his teacher’s name again. There is so much for him to process and deal with. I pray tonight he gets more sleep. We both need it. That is my prayer, my cry out to God, please let him sleep and have a great day tomorrow. His smile is the victory in every single day. Share your smile. There is always someone that needs to see it. Smiles to all and donut daze!
One of the greatest joys is watching the smile wash across Owen’s face when I say, “hey you know what”. For years I’ve said it to him and now for him to immediately smile and say, “I love you” puts the smile right back on my face. The day was filled with struggles and joys all intertwined but the love, giggles, and lots of snuggles got us through all of it. When I dropped Owen off at “camp” he was on to me. He pretty much knew this was school but that big playground sealed the deal. And he always loves school but the transition and word “school” was hard for him when he knew he would not see his regular teacher until August. We arrived early and he got to see some of the kids from his previous years in school. I could tell he was still apprehensive but he was ready to meet his teacher. The bus brought him home and I could tell that made him happy. From there he was connected to my hip pretty much right until I said it was time for his bath and then magically he went and sat on the couch, not hearing a word I was speaking. When your child repeats words you have a whole new level of interesting. I don’t know how to get out of the circles sometimes. I work on only allowing him to say the phrase so many times, distracting him by playing games or asking him questions, and even repeating everything with him, and no matter what strategy I focus on after me trying to help him through the behavior he will go right back to repeating the words. And in his book me ignoring him is not an option because he will get nose to nose with me and keep repeating what he wants to say. I’m sure I’m missing the steps of some strategic workaround or positive reinforcement aspect to help ease his anxiety but I still have yet to figure it out. Plus, did I mention I’m tired. I asked him what he wanted for dinner and he said, “waffles please”. I was shocked by this even though I know he loves them. Usually, he always says, “shrimp”. I thought we haven’t had breakfast for dinner in a while and it was his request. He ate them all. All through dinner, his bath, and until he fell asleep he repeated what his schedule would be for tomorrow, including his teacher’s name with every pronunciation he could come up with. And with that I was on to him, knowing he was doing it so I would say her name. He fell asleep in my arms, stretched out like only an octopus could do, taking up the entire double bed it seemed. That boy has grown. I’m thankful he had a good day. I’m thankful for the joy he brings to my heart. And I’m thankful he is ready to go back tomorrow. Find joy in the little things and know that you can make a difference in your world around you. Smiles to all and donut daze!
Exhaustion is catching up with me. I thought today would be the day I would accomplish a lot. Today was not that day. Owen and I did have a really fun day though. There were a few moments we were in circles but in general, he did well. Tomorrow is summer “camp”. He has been repeating his teacher’s name over and over again all day and he tells me he will see her tomorrow so that’s good. But then he tells me “no new kids today”. It’s a lot for him to process. He then would start listing off the kids from his class. How do you explain something like this. All I can do is try to help him through it. He was so excited to go to church this morning. He told me he wanted to wear his green shirt and blue pants but I told him his green shirt was dirty. He told me one of the guys at church wore a green shirt and blue jeans. It didn’t dawn on me that he was actually telling me he wanted to dress just like him. They all were T-shirts that have the logo on them for his classroom. I loved the connection and when I told them they gave him his very own T-shirt that he will be able to wear next week. When we came home from church we drove by the windows. He didn’t scream at me going to church or coming home. He only told me a couple of things about the way I was driving but stayed very calm. We drove by his beloved windows, the flag he likes, and the mural he wants to turn by, and then we came home. He didn’t cry, scream, or have a meltdown through the whole process. I watch him bounce on his balance ball and I’m always amazed at how well he does with it and he keeps it right with him. His coordination is so finely tuned but there are still those components that his body can’t do. He was very mischievous today. I could see the little gleam in his eyes. He asked for the puffcorn he likes and instead of sitting to eat it he would take a bite and run. I told him he had to sit while he was eating so he would sit, grab one, put it in his mouth, look at me, and then runoff. I was onto him though. After a couple more I told him he had to stay seated. He said, “no more seated today” and once again ran off to play. Eventually puffcorn for the win and he came back and sat down. Now as bedtime approaches I’m hoping we can get to bed early and he will be ready for his new adventure. He’s kept me on my toes today but his smile has brightened my world. Dream of the possibilities of tomorrow. Know that all things are possible if you believe. Smiles to all and donut daze!
“I’m not taking the bus to camp” was the running theme for the day. I told Owen he was going to “camp” on Monday. But now this has turned into a will of words and we’ll see what the actions hold. He is struggling with routine and his schedule. Constantly throughout the day, he wants to know where he is going and what he is going to do for the days ahead but if I go too far in his schedule the screaming begins. Where, why, when do you figure out how to stop the moving train when you don’t even realize you have left the train station. Owen repeats himself nonstop, nonstop. And he doesn’t say an entire word, waiting for the affirmation from me to come of the complete word. He knew we were going to the coffee shop, bowling, and grandma’s but it is a completely different order than our routine used to be. My mind races trying to keep it all straight. Which rules can bend, which need to be consistent, which ones do I adjust, and which ones do I cry over. The first word out of his mouth when he woke up was “grandma”. He knew he was going. He gave me a hug, then it was “tablet no potty today”. He needed that reassurance he was going to do all his activities. He said, “gran gran gr gr gr” and wouldn’t finish it, waiting for me to tell him he was going to grandma’s house m. When I got him dressed to go I put a light-colored pair of blue jeans on him. They were new because he’s almost grown out of his smaller pants. He immediately wanted “blue pants”. I told him they were blue pants. Off he went to his room. Seconds later he returned with a pair that was in his dresser but too big for him. He wanted to wear them. They were darker. I told him they were too big. He took off the ones I had put on him. He then decided he wanted “tan pants”, again bringing me a pair that was too big. Luckily I was able to find a pair that met with his requirements and mine that they actually fit. We left for our journey. I truly couldn’t handle any yelling today so I made him spell animals with me on the fifteen-minute car ride. He knows how to spell a lot of animals or close with assistance. He also tried to tell me how to drive but I kept asking him the same question over and over again. We got there and I felt like I had run a marathon. When I picked him up after his visit we went to the coffee shop and then bowling. Oh, how that boy loves bowling. We bowl together but he’s getting to the point I think he will start throwing more of the balls on his own. When we got home he was mad because we didn’t go see the windows. I told him we would see them tomorrow if he didn’t yell on the way to church. That’s worked the last couple of weeks, kinda, so I’m going with it. After a very full day, he finally fell asleep almost at eleven o’clock and now I sit and collect all my scattered marbles that I feel like I’ve lost today. He sang Humpty Dumpty in Vietnamese tonight, I think, as he was getting ready for bed and I’m thankful for that smile and the laughter he had from watching a monkey eat. Let the little joys rule the day and everything else wash away. Sing your victories from the rooftops and know that tomorrow is a brand new day. Smiles to all and donut daze!
I am really missing those three days in a row Owen slept all night. Really, really missing them. I never imagined I’d never have enough hours in my day but I truly don’t. I took Owen to see “camp” today. That’s what I decided to call his summer school program. He was getting upset because he knows he’s not going back to school yet but then I was telling him he was going to school. He still wasn’t interested in meeting the new teacher or being with other kids until I drove him by the most exciting part of “camp”, they have a playground. When I drove him to the school I purposely drove him behind the school first. I told him to look at the playground he was going to play on, emphasizing he would be there Monday. He got excited, talking up a storm about the “swide”. He still struggles with certain letters and depending on where they are in the word makes a difference for him. That’s one of the reasons I think him learning all the languages is helping him learn how to pronounce and enunciate certain words. When we left “camp” I explained to him that I would be taking him on Monday but he would be riding the bus home. He absolutely loves the bus. I talked to his summer bus driver and aide today and I was so thankful. It is the greatest gift when you have people that are invested in your child and they haven’t even met him yet. Like his summer teacher, they asked me numerous questions to help Owen adapt to the transition of summer and what his likes and dislikes were. They talked to me about how to handle meltdowns if they occur and what they could do to try and keep him happy. I was beyond relieved. I loved all of his support he had for the regular school year and then to hear these questions made me know that he would be supported through the summer as well. When we went to the school I told him that we were going to go get chicken nuggets and ice cream afterward. He is starting to cycle through phrases he hasn’t used in a while. “Quick like a bunny”, he said to me, once again my words coming out of his mouth. I would always tell him we wouldn’t be gone long and we be quick like a bunny. Nothing is quick for us but it sounds good. He has been watching Curious George lately and he was eating ice cream. Owen truly is not a sweet eater even though chocolate milk is his go-to drink. We got our meals and I got a chocolate shake for him, truly knowing who was going to eat the bulk of it. He devoured his dinner, eating all his nuggets, fries, and a cheeseburger. This after he ate a huge breakfast and tons of shrimp for lunch, plus snacks all day. I showed him the “ice cream” and told him to take a bite. He took the tiniest of bites and wrinkled his nose. I thought that might be the end of it but he had a couple more with the same wrinkled nose effect. After about five more bites he was done. The total amount of those bites didn’t even equal half a teaspoon. More for momma. Wait, I’m supposed to be giving up sweets. Stress ain’t got nothing on me. We ended our night with him reciting vacuum demonstrations, playing his drum, and working on “fixing” his laptop but was really watching the Very Hungry Caterpillar. He has become quite the expert on how to demonstrate a vacuum which means he turns it on and screams to turn it off. If he doesn’t turn it on he will talk through numerous videos he has watched with kids giving vacuum reviews. My joy was watching him play his drum and singing throughout the day. My music man knows how to make his momma’s heart sing. Look for the joy in that never ending rainbow and soar to new heights in the hope for tomorrow. Smiles to all and donut daze!
One week into summer break and I’m over it. Breaks are hard. No matter why, no matter when, any and all breaks from the routine Owen loves is hard. I want to cry. And so I did. The more I cried the more he laughed. He can’t process emotions and he doesn’t completely understand how to handle mine. The good news, maybe, is he starts summer school on Monday. But he’s not prepared for it. I’ve been trying to prepare him but I didn’t know all the details until today. Still truly don’t know about the bus but I spoke with his teacher and I know what school he is going to. I told Owen he would be starting on Monday, going over the schedule for the next few days numerous times. He got very agitated, telling me “no school until August”. So now I should come up with a new name for his summer school. He looks at a calendar app every day now. That feels like big progress so maybe he is comprehending when August is coming. Summer school is optional for him so if it is too hard for him to transition to the schedule then I won’t keep sending him. I think he’ll be fine after the first couple of days but it will give me plenty of opportunity to overthink all the options I think I need to overthink. He had therapy today. I wondered how it would go. His behaviors are all intertwining right now trying to find their place. He doesn’t want to go to the potty, ever, stating “no potty today”. It’s hard to think about my nine year old wetting his pants. This is a behavior that we’ve worked very hard through. Too many tears running down my face to even drink my coffee. He does much better with it when his routine stays his routine. Anything outside his bubble causes this ripple effect. His therapy went okay today but they could tell he was struggling. Rays of lights and shadows delight him, dancing around to see them. I’m sure the reflections bring a comfort that I truly don’t comprehend but know he needs. During one of his sessions he kept getting distracted by the lights reflecting off the different surfaces. This is very common for him and he will have to repeat the same actions over and over again until he finds comfort. I laid next to him, waiting for him to fall asleep, praying for comfort and understanding to wash over him. My heart aches for the troubled waters that crash over him when nothing is routine. Tomorrow he will “be with mommy” all day and this in itself is a big adjustment for him because he needs those interactions with people. And tomorrow I will tell him I love him and everything is going to be alright. He’s the one that puts a song in my heart. Find your inspiration and go after your dreams. Smiles to all and donut daze!
The goal is to stay ahead of the meltdown, always. But sometimes you don’t know if your anticipation of a behavior is going to add to the meltdown. Owen wanted to check for trains one more time, at the yellow house and the meltdown was happening before I could even drive away. I told him we would go today, hoping that the yellow train depot was the yellow house he was talking about. It was but he had a set agenda in mind. I let him tell me the way he wanted to go but two times around were not enough. He didn’t understand that we had an appointment to go to for our therapy. He knew we were going but the concept of time is so hard for him to understand. His screams got louder as I drove away. Everything feels even bigger right now. Schools out. No routine, no consistency, no schedule. He keeps wondering where he’s going to go what he is supposed to be doing, constantly repeating what he is going to be doing. My heart aches trying to explain this all to him. How can I. All he wants is his schedule back. He cries out for the bus to take him to school. It felt like an eternity for the screams that rippled through his whole body and then to mine. I tried to distract him, comfort him but the screams kept going. We had about ten minutes before we went into our appointment. I was able to calm him but it is still so draining, on both of us. But hey I now know that when he wants to check for trains at the yellow house he means the depot. Now if only I knew where the blue house was. And it’s hard to know if I should let him go to places that being such emotions but yet if I don’t he still asks to go. We got into the room at the doctor’s office and he wanted to dance with me. It was such a thrill for me. He’s never asked me to dance like this before. We danced, he jumped, he spun. When we got home he sang and danced more. He stood there singing, “skinamarinky dinky doo skinamarinky doo I love you I love you all thank you”. I loved that he said, “thank you”. It felt grand to me like he was thanking his audiences stead of just me. The twist and turns of our day kept me on my toes. Autism is as much about how I handle it as it is about Owen having it. Tomorrow is a brand new day. Let the troubles of today wash away and look for the miracles of tomorrow. Smiles to all and donut daze!
His words, his actions, his reactions, his memories, his smiles, and his laughter all were full of huge energy today. Owen didn’t sleep all night but he made it until about four and then slept for another two hours. He’s been pretty tired today but also full of energy. Sometimes his words feel disjointed and broken and other times they are very wordy, expressive, and perfect. He’s been my music man today. I love hearing him sing. He broke out in a random round of The Wheels On The Bus while he was listening to Humpty Dumpty in Thai. He’s played his keyboard, ukulele, and harmonica throughout the day. He was singing and playing at the same time and his feet were going, tapping to the beat. Music has always been very important to me. I wanted to make sure he has all the opportunities to learn and grow with it. When we woke this morning he immediately started asking me to say things in German. I said, “I love you” and then we spent another ten minutes having Siri tell us all the translations of I love you she could. His quest for knowledge is a joy to watch. He started randomly talking about the honey bee and hippopotamus. He told me everything he knew about the honey bee and that they made the flowers grow and went to the hive. He told about how they didn’t have “no teff today”. But then he went on to explain to me that hippopotamuses have big strong teeth and they can smile really big. My goal is always to promote conversation with Owen. Tonight I sat on the couch with him and it felt great to have him sitting with me, interacting with me, and driving some of the conversations. It wasn’t all directed by his tablet or his schedule. It was us talking about the languages he likes and what foods he ate. He felt connected to the moment. We did play some of his games together on his tablet but that even felt different. I’ve waited years for these moments and they are raw beautiful dances of light coming from my baby’s heart. I’m beyond thankful. I asked him what foods he would like to get from our grocery delivery. I asked him to tell me something he would like that he hadn’t eaten in a while. He said, “French toast”. Those words were truly sweet to my ears. Some days I gulp huge breaths trying to make it through our day without crying. And other days the tears flow from the joy of watching the connections build. French toast has been added to our list for my sweet baby O. Celebrate your victories no matter how big or small they are, celebrate each and every one. They truly matter just like you. 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
May 2024
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