How much does a schedule mean when it’s not the schedule you want. And how much sadness can you have. The answer is a lot. No matter how you look at this it’s hard on Owen. Harder than hard, really. He wants his routine, he wants his schedule, he wants the life he loves. And I don’t blame him one bit. It’s so hard right now to not be able to give him his tiny version of the world. He goes through cycles of what he requests to do and then today was a big meltdown and a whole bunch of small ones because he couldn’t see his teacher or go to school. I told Owen the school was “broken” when all of this started. I try to explain it in terms that he understands. My heart aches when I can’t figure out the words to give him the comfort he needs. I have tried to keep a smile on my face and the fear away from my heart, my brave chicken face shining through. I want to take Owen to all the places he requests and this to be the growing, learning memory that changes us for the good. I have reflected back on the life I had and the days and moments in time that made me who I am today. I keep trying to remember that every stepping stone, no matter how far apart they are from each other is still a step forward. Like I always tell Owen let’s grow together. I’m determined to take the sadness I feel from all of this and turn it into something positive. We can’t let our challenges be what keeps us rooted in our past. As many meltdowns as Owen had he also did many amazing things. He’s learning to ride his scooter, tell time, do addition, use silverware, and other life skills. I’m thankful to see his smile shine through even when I know how hard it has been on him. The hugs, the kisses, the words, the growth, and that charm that gets me to do the steps he knows how to do all show me that through it all we are a team and together we will get through this. He listened incredibly well today and for the most part was calm. I hugged him a lot. I probably needed it more than him. Walk through the memories, but know that tomorrow is what you are looking for. Smiles to all and donut daze!
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Trying to establish a routine that has never been established before is interesting. You never realize how you are handling something until you take a closer look at it and then decide you have to change. I’m trying to set an even tighter routine for Owen, hoping that the structure will help him get through these days. I’ve always let him eat his snacks in the living room at his little table. But this is too easy for him to run around the house while eating, leaving the trail as he goes. After days of this, it finally occurred to me that I needed to create the routine I want him to have. So we started eating all our meals and snacks together and the kitchen table. It was an easier transition than I thought it was going to be, except for one little moment in time. I’ve been leaving his snacks for a while on the table so he could get milk when he wanted it. I went to the bathroom and I heard a noise. Noises are never good when I’m in the bathroom, but I didn’t hear “oww did you hurt yourself” so I figure something went somewhere. I walked out to see his drink and snack plate filled with most of his veggie straws on his little table in the living room. The other half were scattered on the kitchen floor, but I was like hey he moved his plate and got most of it to the table. I made him take it back to the kitchen table and we had his snack and played a couple of games. The games he was not as happy about, but I’m trying to throw some of those educational curveballs in when I can. The potty train was not as much of a wreck today and he ran to the bathroom numerous times, declaring, “ya got poop”. Hey, I’ll take those victories. What I try not to think about is all the jumping he does in our house as it shakes from his constant movement. Not quite fifty pounds doing a lot more than fifty jumps a day from all kinds of heights and locations leads to lots of fun. It’s the stuff like that I keep putting on the back burner and I try to put it out of my mind. One day at a time. He was calmer for the most part today. I reminded him that we are a team and together we would get through this. He kinda gave me a look at that point and I think he was processing what I said. There were joys and victories today and for that I’m thankful. Count your blessing, know the rocky road will become smooth once again, and tomorrow is a brand new day. Smiles to all and donut daze!
I watched my sensory child squish fish between his fingers as he then put it in his mouth. Chicken gets squished in his toes more than his fingers, but it happens too. In the grand scheme of food, he’s actually a great eater. Way before I understood how difficult food could be for him and autism wasn’t even something I understood I knew I was going to make sure he always tried new foods. This was easier said than done, but we’ve gotten there. Owen was dairy and gluten free for many years. I had a friend tell me about a video they watched concerning milk and autism, the brain-gut connection sometimes called leaky gut. I then had one of his therapists explain to me how sensitive people with autism could be to food. She told me I should try to rotate brands and not let him see the labels. These steps I believed significantly helped me work with Owen‘s eating habits. We got a new TV and Owen was watching Winnie the Pooh in French on his tablet and English on the TV. It had been years since we’ve had a TV. I got rid of it when he started trying to knock it off the stand and throw things at it as soon as I would walk out of the room. It was his way of getting my attention to say the least. Today was the first time we had it on. He was very excited. I made one slight fail I showed him that he could have YouTube on it. He wanted to watch a particular show, but he only wanted the theme song and once it was over he wanted me to start it again. I did it a few times and then turned it back to Winnie the Pooh. For hours and hours and hours, so well over seven hours he repeated off and on the name of the show he wanted. It’s not a casual repeat it’s a constant repeat. He breathes, he moves on for a few minutes, and then he asks again for ten minutes or twenty or thirty straight. Literally every time he stops his words start again. This is something that he has always done, but in the last month, it is a constant. His words as he fell asleep where “I need a big hug” and asked for the show. And finally, he was asleep. How do you keep a routine when there is nothing routine right now. He asked to “call church”, bowling, school, family, friends, but as soon as I offered to call any of them he ran screaming from me covering his ears. Potty training regression is something that I don’t want to think about, but then as he was starting to fall asleep he got up to go on his own. Something he hadn’t done all day. That’s the moment I cling to. That’s the moment I want to remember. He kissed me today saying, “I wuv ewe” and that’s the most important memory for the day. Today is one moment in time. Celebrate your victories, rejoice in the glory, and know tomorrow is a brand new day. Smiles to all and donut daze!
I always say autism is as much about how I handle it as it is about Owen having it. The more structure I can create for Owen the better his days go. This isn’t always easy for me. I like a schedule to some degree, but I prefer the flexibility of time and place, and space for that matter. Today was one of those good bad days. He did so many incredible things. He followed directions, ate his breakfast, lunch, dinner, and snacks at our table, and he wasn’t pleased, but he did a lot of his schoolwork. The repeating of his words is constant. And the more I try to distract him or get him to stop the more that feeds his desire to repeat the words. Before we even got out of bed he was asking for his ride. I simply have no way of hiding my emotions at the break of dawn. For that matter no way to hide my emotions at ten o’clock at night when he is jumping up and down asking to “wanna watch de movie” and putting his foot in my back while pulling the tiniest of my hairs. But he listened so well to so many things today I’m trying not to think about the potty regression and rejoice the fact that he didn’t run around the entire house eating his food. I put it on the kitchen table, his milk included and he stayed right there through all the meals and snacks. Now that’s a big rejoice right there. I am still in shock over it. Thankful doesn’t even describe it. I didn’t even begin to understand my emotions until I was living in a house without surfacing up for air. Yes, we go for our walks, but we’ve been home so much I finally realized that I have to live life, not sit and wait for it to happen. And I guess that’s made the last few days even harder for me with Owen because I see behaviors and routines I should have worked through years ago. I can’t live in the past either. I have to push forward and work through my own emotions so I can help my son work through his. Potty training was not an easy road. And now to see him quickly going back to some of those habits are heartbreaking. I remind myself that the dude sat at the table for every meal, he did his schoolwork, we played several games, he played music for me, we painted, and we both grew. Life is full of challenges and especially during a pandemic where nothing is routine, but here we are and tomorrow we keep growing. Don’t let yesterday predict how your tomorrow will be. You can change and expand the horizon in front of you. Take those challenges and make them into memories that help you grow. Smiles to all and donut daze!
My little music man wanted to play his guitar and his drum. He was excited to sing “old MacDonald had a cow”. He likes to do the animal noises. I was showing him how to hold the little ukulele with his hands. I can’t even play a note, but I keep hoping that he will magically be able to figure it out from the instructions I am giving him. He has such a beautiful little voice and perfect pitch when he is using his voice and not trying to mimic a character from a video. I’m always amazed at his voice. When he was a baby I wanted him to understand the importance of music and the connection that it gives us to our soul. I would hold one of his hands on my throat and the other one to my mouth or heart. I hoped he would be able to hear my love shine through and the connection would soothe him, even if my singing was off-key. Today felt like a mountain I couldn’t climb and I tumbled down the other side. Regression is so hard to watch and I feel like I have no control over how to help him. He misses his life, who doesn’t, but he can’t even begin to understand why we aren’t going places. What he must be feeling inside overwhelms me. I try to calm him and help him understand I’m here for him, but it’s not the same as going out into the world and living. I used to be afraid to walk out my door because it was so hard on Owen when we would go anywhere. The meltdowns were huge and my heart broke in a million pieces every time we would walk out our door. It was emotional, it was demanding of my whole body, and now here we are again, for different reasons, but not walking out our door. It makes me sad for all the progress we had up to this point that now we can’t go when we need to go. All I can do is pray for the tomorrows yet to come. I have to protect my baby even if it feels like we are backtracking. I saw progress with his words today even though I felt like we were losing ground in other ways. I cling to that, holding on for dear life to that moment when I heard him say, “head shoulders knees and toes” instead of using the word “mes” for knees like he generally does. Life does not always go according to plan, but know this is one moment in time and keep pushing forward. Smiles to all and donut daze!
I tried to stay one step ahead of the downpouring of emotions from both of us and I did pretty well most of the day, most of it. Owen can read me like a book and he knows what buttons to push and to push them hard. I let him play all day, doing what he wanted, instead of trying to keep him focused on his schoolwork. Some days I can’t calm him enough to even try. Today was one of those days. I think it went smoother. I got him a new scooter and I gave it to him first thing in the morning. He acted like he had been using one forever. It is the kind you sit down and push with your feet. He would sit on it between playing on his tablet. I told him that we were going to do some of his work and he kept telling me no. He became like a whirlwind and wouldn’t stop. I let him play for a while longer. Instead of working on his school apps, we worked on his papers. That went over about as well as the apps though. He had to paste the letters into the right spots, but instead, he would put them in the wrong spots or upside down. He knows his alphabet backwards and forwards yet he won’t do the steps correctly because he likes the negative results. I try not to show my emotions because those feed his own and keeps him going down the same path. It’s hard not to correct him on every move when I know he can easily do the answers. He wanted me to find the BabyBus apps in the apps store. It’s a quite frequent daily request, more like an hourly request. He can get to it numerous ways, but he still wants me to type in the search request. I showed him how I did the steps, told him what he needed to type in, and the button he needed to use for searching. Then I had him write out the letters for the app on the whiteboard so he could see it later when he tried it again. I went through it with him several times and off he ran. He asked me a couple of times to do it with him and then I heard him throughout the day doing it on his own. I hold on to the progress. That’s what keeps me pushing forward. I try not to focus on the screaming or the hard times he will have trying to fall asleep at night. Today was filled with giggles, love, milestones, and challenges, but his smile shines through it all. He sang throughout the day requesting to play his drum and he wanted his guitar, which is really a ukulele, but he played and we grew together. Tomorrow is a new day. I will strive to be a better me, a stronger me, and a more compassionate me. Find what motivates you and be inspired to change the world one smile at a time. Smiles to all and donut daze!
How do you explain the unexplainable. I can’t even explain this to myself and here we are. And it’s thinking about snowing. Only a little bit. Maybe more like slush, but hey let’s add it into the mix of everything else that’s going on. I was calm most of the day. Owen was calm most of the day as well. Until Christopher Robin did not show up where he thought he would and then I had to spend an hour trying to “crack an egg” with him on one of his apps that for some reason we can never crack the last egg and it upsets him greatly. I’ve deleted the app multiple times and hidden it only for him to find it again. He was able to find Facebook and added it to his tablet because he wanted to “watch de movie” which is a musician playing a drum. He can watch him on YouTube, but he likes a certain video that is only on Facebook. He tried to log into the Facebook app in every language available. And I kept deleting it as well. Once upon a time, I knew technology, but I can’t seem to even lock the volume control on his tablet no matter how many times I go through the steps. By the time I’ve figured or not figured out how to do something, he has moved on to the next moment in time. As the night wore on the night wore on me. I was so excited earlier because I didn’t have to go to the bathroom with Owen. I didn’t even have to ask him. He ran past me, went, washed his hands, even dried his hands mostly. I only needed to help him with his underwear and bravo he did his own bathroom break. But then tonight he walks into the bathroom to get ready for his bath and pees on the floor right in front of me. Next up bedtime, where he proceeds to scream in my face “watch de movie” which was already on for him, wanted me to pull out his loose tooth, and gagging himself so he could yell “don’t make yourself sick”, all while jumping on the bed because “you don’t wanna break the bed”. So he’s asleep and I pray for a better day for him. The routine I have created for us gets thrown out the window about ten minutes after we start it. And my tears echo the emotions I know he must be having, but can’t even begin to explain them. One breath at a time we will make it through our days. Never give up. Find joy throughout your day and know that on this journey you are not alone. Smiles to all and donut daze!
I could fill this whole paragraph with “go for a ride” and it still wouldn’t be as many times as I heard it today. Owen’s shouted it, sang it, and screamed it within an inch of my nose. We went for a ride, albeit quick because of the weather we still did go. He always asks to go for a ride because I push him in his stroller. Every once in awhile he will walk, but generally he likes me to push him. “Vacuum” is a close second for what he has wanted today. He wants the big vacuum out so he can do the reviews like the videos he watches, but he screams about it more than he recites the reviews. The little vacuum he likes to turn on, scream to turn it off, actually turn it off, and then immediately turn it back on. And he is the one holding it. I know he must be working through emotions, that’s all I can think about. The screaming is constant. We worked on one of his school apps. It was math problems. He knew them. We say them out loud all the time and he can go through them quickly on several of the math apps he has. However, Owen likes the negative reaction the characters do on the apps. This causes him to repeatedly choose the wrong answers so he gets to do the same thing over and over again. And he thrives if I show any concern for the wrong answer. He will drag the wrong number to the box and watch how I respond. He delights in my response as much as he does the app’s noises for an incorrect answer. Trying to discipline Owen works the same way. If I put him in timeout or explain why we don’t do something that will make him repeat the action again. I’m looking at new ways to discipline him, but even more in ways to get him to understand what his actions mean. I tell him all the time we are a team and we have to work through this together. I never imagined how difficult it could be for my child, but I’m thankful for his smile, his joy, and his love. I keep reminding myself that this is one moment in time and we will get through it. I was probably harder on myself than I should have been today, but I want to give my child the world and the world seems to be standing still at the moment. Keep pushing forward I remind myself. Be the change you want to see in the world and remember you are not alone. Smiles to all and donut daze!I’m trying to remember to smile. I’ve stayed one step ahead of being a puddle on the floor today, so that’s good. Owen is constant from the moment he wakes to the moment he falls asleep. He laughs hard, he plays hard, he screams hard, and he doesn’t stop. Not all screams are mad ones or sad ones. A lot of times they are excited screams of joy, but it is still loud most of the time. If I try to play any sound on my phone he screams and immediately tries to take my phone away. And if that doesn’t work he stands in front of me with his hands on his ears and his foot beating the floor. But I have to focus on his joy, his smile, his love. I don’t want to think about the regression and huge potty training issues we are having. If I use a phrase one time, it doesn’t matter if I’ve said it correctly or if it really applies to a situation Owen will use it. I have to constantly be on my toes to my words and actions. This is easier said than done when you are with your child constantly around the clock. I asked Owen if he wanted to take a bath. He said, “that’s not a question”. I usually tell him to go potty and he says “no”, so I’ve said, “that’s not a question go potty”. He will reply with “yes ma’am no ma’am” when I ask him if he needs to go to the potty or if he likes a certain food. I try to get him to understand he only has to use one of the replies. If I know he does like a certain food I will tell him “say yes ma’am”, but he still replies with both answers. I’m trying to find a balance of what to do throughout our days and keeping him growing. To see any steps backwards causes me to spin as well. I want to keep the progress moving forward, but I’m also only one person full of as many emotions as he has trying to hold it all together through these trying times. I’ve never been a neat and organized person. I’ve always been fine with things randomly anywhere, but the more time I spend in my house and with my child that sees everything as something I know that I have to simplify our lives. Here’s to a clutter-free lifestyle. As I look back over our day I will focus on the love. His smile makes me smile, his joy goes right to my heart, and as stressed as I am knowing he is smiling throughout our days makes me push harder for a better tomorrow. Find joy in your heart and share it with the world. Be the change you want to see. Smiles to all and donut daze!
My heart aches a lot today. I’ve made many accomplishments and I’ve laughed throughout the day with Owen, but I still am extremely sad. I walked past a picture that I have sitting in my kitchen. It made me even sadder. Owen wanted to go all day and I couldn’t make myself walk out our door. The emotional turmoil of that hurt as well. All he wants to do is go on a walk or to the store or bowling or anywhere but here and here we sit. He asked for church over and over today with everything else he asked for. It brings me back to the picture. The picture was of me at church, working one of the video cameras for the Sunday service. It’s one of those many things we take for granted in our daily lives. The couple of hours a month I spend behind that camera bring me incredible joy and I think about everything Owen asked for today, his joys. I tried not to be emotional all day. I tried to ignore my feelings and push through the day, but the grief of the simple things overwhelmed me. Social stories are a way that a lot of families will explain circumstances to their children, but for Owen, he doesn’t like the pictures or words. The school board called and before I could answer the phone it went to voicemail. I listened to the voicemail on speaker, but as soon as Owen heard the voice and what it was about he was screaming, then crying, and down he went into a ball on the floor. The tears are finally falling down my face. My heart breaks for all the families hurting. My heart breaks for people that feel alone right now. And my heart breaks for my sweet baby O that wanted to “call church”, but emotionally he can’t handle talking to anyone that he can’t see face to face. Tomorrow will be a better day I tell myself. I try not to think about all the screams from Owen that went straight to my heart. I told Owen I loved him as many times as I could during the day. I wanted to reassure him that mommy was here for him. The journey did not go according to plan but tomorrow I will try to focus on the smiles and less on the sadness. I remind myself positive words and positive actions equal a positive life. Keep pushing 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
April 2024
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