When we got home yesterday Owen ran through the house turning on the lights he wanted on, maybe needed on. He goes through stages where certain lights are good lights and other lights he screams about. He’s currently on the cycle where my bedroom light is the only one that can’t be on. All of the rest he runs through the house switching on. As the night progresses he will check to make sure that I haven’t switched them on or off incorrectly. My bedroom light can now be on for “a couple minute” without screams. But there’s an inspection process on how long I’m in there. He will stand at the doorway, chewing on his tablet if he has it in his hands, and his toes will start tapping the floor. I try to explain that mommy can be in her room with the lights on, but he makes it know that it is clearly not his preference. He had a very calm night, loud but calm. There really is no quiet time for us. Owen is full of sounds and constant energy. We hadn’t slept well the night before and many nights before that, so last night I was hoping for sleep, praying for sleep. The routine night went perfectly. Supplements, bath time, the right story, videos, music, and quick glorious sleep all happened as it should. And he slept in his bed until a little after four, coming to my bed and mostly sleeping two more hours. There’s some celebration going on in my own body, let me tell you. I think I was asleep by nine and not much derailed this train. I needed it. If we could have a couple more nights like that it would be amazing. He woke happy, I woke happy, and I was ready for any singing birds we might encounter. Sometimes I wish they would sing their happy tune later in the day. Owen was excited to go to school and after a tiny hitch in our giddy-up about driving to the bus stop, we walked and he couldn’t wait for the bus to arrive. He got on the bus, leaned down on the steps like he was hugging them and said, “I missed you”. My heart exploded with joy and I thought if we could love the world like my little boy shows his love it would be amazing. Tell someone you missed them today, show them you care about them, and know that you are loved. Today is the first day of the rest of your life, make it amazing. Smiles to all and donut daze!
I’m stressed with a side of tired. Or maybe it’s the other way around. Any noise is a noise for Owen. And all noises wake him. He woke last night, got into bed with me, and from there we both struggled for sleep. He doesn’t understand personal space at all. Owen wanted to put his head on my head. He finds peace there, but for me, it hurts. Even in his sleep, he will squish his head against mine. I built him a little fortress in my bed with a huge U-shaped body pillow and several blankets, but he still finds a way to maneuver up to my head. I want to scream, cry, and find a way to get him back to his bed. But instead, I have to remain as calm as possible hoping to keep him asleep. That doesn’t always work. Last night was one of those nights. He laughed through most of the night. I could tell he was exhausted, I know I am, but he couldn’t find the comfort he sought and I couldn’t let him lay on my head. Sometimes I tell myself if I can handle it for a minute he’ll be asleep and I can move him, but moving him wakes him up so I have to get him off my head before he falls asleep. We finally fell asleep within an hour of the time we needed to get him ready for school. He wanted to play instead of getting dressed, but he handled it all well until we went outside. He wanted to get in the car to drive to the bus stop, but I told him we would walk. He started screaming every so slightly and I started distracting him. That’s no easy task when he has a plan of action. We got to the bus stop and he was all giggles and smiles. The joy he has from learning and going to school makes my heart sing. During the wee hours of the night, he was reciting lessons he learned from his school apps. The moments of exhaustion get pushed away by the joy he gives me, as I sit here and yawn as I type. As the bus turned the corner he started singing away and I knew that everything would be fine. Through his eyes, I see the world in a whole new light. Push through the moments that rock your world, seek joy in the task at hand, and smile for the world to see. Smiles to all and donut daze!
Owen seemed like he was in a really good mood when he woke this morning. He had a few moments of uncertainty of what to do, but then was ready to get his day started. His anxiety keeps him asking questions and his need for routine keeps him firmly planted in what we are supposed to do on certain days. We can change our schedule, but sometimes it’s not at that moment that it’s hard on him; instead later when he’s had time to process it the questions or anxiousness shows. Last night he fell asleep quickly, but I could hear his restlessness even as he laid there. When we came home from our day he was upset. The puppy and woman that he wanted to say hi and bye-bye to were causing him distress. I’m still not sure if it’s our neighbor he is thinking about or those are the only words he can use to express his concern for something else that he is seeing. His fight or flight response triggers easily now and I’m only beginning to understand some of the signs. I have to try and stay one step ahead of his meltdowns, but sometimes I don’t even know what is triggering them or the signs that are right in front of me. His vocabulary is increasing, but his expressive language does not necessarily match the words he is using. I can’t always ask him a question and get a direct response or if he does respond it may not be an appropriate response. I’ve explained to him that he could say, “yes ma’am” or “no ma’am” when I asked him questions like do you need to go to the potty. He will answer, “yes ma’am and no ma’am”, clearly needing to go to the potty. As he learns and grows I have to distinguish if his responses are age-appropriate, autism-related, or because of how Owen is handling a situation. The dude is certainly learning which buttons to push and how hard to push them. His smile tells on him though and it also is my guide to know if he is understanding what he is doing and saying or if the situation is stressful for him. Growing Owen is what we do, but I’m learning as much from him as I’m teaching him. Let the world see your smile. Know that you can be the change you want to see in the world. Smiles to all and donut daze!
There is no expectation of sleep for me any more right Owen. It took him over two hours to fall asleep last night. The events of our day left me with a scavenger’s headache. The kind that looks for every possible spot to sit and rock your world. Yesterday was too much for Owen, too much for me too. He couldn’t fall asleep. His little body seeking input, but not allowing for the calm I was trying to give him. His eyes would flutter so close to sleep only to open again with full-on laughter behind them. He’d spring up out of the bed with a jolt and scream until I calmed him again. In those moments my heart races because now how much longer is it going to take him to fall asleep, will he start screaming again, or biting me for the input his body is seeking. Why did the biting have to come back. The cycle of behaviors come in and out of our lives. When I think they are gone here they come again. I don’t even think Owen lasted two hours in his bed after he fell asleep. I had barely been asleep myself when I heard him coming to my bed. He was restless all night, moving constantly and speaking out through his night’s dreams, my head still roaring from the day behind us. Our day started out with screaming to laughter in two-point two seconds. He didn’t want me to turn the light on. Ran to it, switched it off while screaming, and then I flipped it back on, giving him a big hug and saying, “I love you squishy”. I’ve called him squishy for as long as I can remember and it always makes him smile. He went to the potty without much fuss, got his milk from the refrigerator that I had prepared for him, and asked for “veggie straw pwease”. I gave him cereal which he devoured. After I put his coat on him he ran back to his cereal, grabbing a handful as we got ready to walk out the door. I’ve tried giving it to him with milk, but he prefers it dry. We walked to the bus stop and when we got there I realized the blue marshmallows had turn Owen into a little Smurf. His lips were blue. He doesn’t like many sweets, but every once in a while I stumble upon something he likes. I got the cereal to work with him on shapes and textures of foods, but it turns out he likes the taste. There are always many paths to the same place. The journey may not be what you expected, but make sure you take a moment to appreciate the world around you. Today is one moment in time. Find your strength, search for the beauty in the world, and know that you can make a difference. Smiles to all and donut daze!
Today is one of those days that needed to be done, got accomplished, and totally and completely exhausted me. And then Owen screamed. We had an appointment today that was long overdue. It was pretty much five years in the making and we are still not to the goal line yet. I can’t even wrap my brain around it all and I think I’ll put it on a shelf for a rainy day. One thing I do know is there is not enough help out there for special needs families. Owen brought his tablet to me, stuck it an inch from my nose, and started saying words that I couldn’t completely understand. He wanted me to use the voice-activated option to help him find something, but his words could not describe exactly what he wanted. He knows what he wants, but we can’t always find it. And sometimes he will be watching the video he wants to see, then brings me his tablet, and asks for the same video he is currently watching. I try to listen to the words he uses and the videos he is watching so I can help him find them without a meltdown or screaming. It becomes overwhelming for both of us. And then I say, “mommy needs a hug” and he comes running. He jumped in my arms and gave me a big hug. He used to think hugs were kisses on his forehead and when I would ask for a hug he would come running, putting his forehead to my lips, and run away again. I would always give him kisses on his forehead and then a big hug, so he didn’t understand the difference. The hug was exactly what this momma needed and he stayed in my arms for several minutes after that. His smile, laughter, and mischievous little grin with the sparkle in his eyes are exactly what get me through our days. I tell him all the time he has to give mommy patience and I remind myself of it as well. Flying chicken went sailing across the room right in front of my face. The laughter ￼erupted from my sweet baby O. Some days the chicken hits the fan, other days it’s in my hair. Today I’ve worn every emotion on my sleeve, but I’m thankful for Owen’s growth and the part of our story that’s yet to be written. The journey through life is not always a straight path, but the winding road gets you there as well. Learn from yesterday and grow into tomorrow. Smiles to all and donut daze!
I’m counting last night as a sleep win. That’s what I’m sticking with. Four really isn’t close to five, but it was a little after four and when he got into bed with me, after a brief discussion of the day’s events to follow, he went back to sleep for a couple more hours. And slept well enough that I could actually go to the bathroom without screams, cries, or him following me. There are so many emotions attached to those few hours of my life. Those moments have been built on the days, months, and years prior to what is and isn’t going to happen in my waking hours. I walk on eggshells trying to keep him calm and help him to understand that life doesn’t always go according to plan. I called Owen my kangaroo baby before I even understood the path that we were on. I watch him jumping now and I feel my house shake as he jumps across the floor. He’s constantly in motion and I’m constantly trying to find ways to help him calm his body. It’s not necessarily the motions I want him to stop because I know his body needs the input, but I want him to understand that there are other ways to get the input he needs. He won’t always be able to jump, run, or roll on the floor when he needs to, so I work with him on breathing techniques, counting, and redirecting the motions he needs to do. He doesn’t fully understand the concept yet, but when we both can concentrate on the process I see it helping him. He’s in a great mood this morning, requesting church every few minutes, and he wanted to change out of his pajamas. I see growth in these moments and I’m thankful. Autism is as much about how I handle it as it is about Owen having it. I try to focus on our victories and not dwell on the moments of uncertainty, but I still have those moments the tears want to fall. I remind myself of the steps we’ve gone through to get to the point we are at now. Positive words and positive actions equal a positive life. Make today matter. Smiles to all and donut daze!
One of my greatest joys is knowing how much Owen loves learning. Another sleepless night for us, but only one of us is tired. I really wanted to celebrate night two of sleep, but that didn’t happen. When we got up Owen immediately started talking about bowling. He was ready to go. He asked and answered himself at the same time. “Let’s go bowling”, he said, quickly followed by, “coup coup couple hours”. He likes to repeat sounds or parts of phrases or words, sometimes hoping I will finish the sentence, other times working on the pronunciation of the words. I love it when I can hear his speech therapy shining through in his voice. There are still letters and sounds that he can’t pronounce. He pulled up one of his school apps on his tablet and it was a waterfall of words. He said, “piece piece piece of clothing trapeze trap trap trap piece piece piece piece of paper”. The words kept going, weaving through the sounds of like words. He overemphasized the word “piece” as he said each word. I could tell his school was working on these sounds with him. He went from the word piece to pizza, the whole time very animated and excited about the sounds. The amount of growth he is showing thrills me through my soul. He is an at will learner, at his will and what he wants to learn. When he does not want to do something I can safely say he will outlast me on the will to avoid a task at all cost. With something that I know he can do will be a dramatic rendition of any movie you have ever seen. He starts whining, his body becomes limp, all of a sudden he can’t hold a crayon, and there is no way anything is ever going to be put on that piece of paper. This is battle picking at its finest. I want to win, but pushing a non-moving train gets you nowhere fast. So I save it for another day. I’m still learning and growing as much as he is. Some days feel like I don’t even know the questions to ask let alone the answers that I have yet to figure out. So I breathe through the moments and move forward. Today is the first day of the rest of your life. Find your inspiration and live your dreams out loud. Smiles to all and donut daze!
I don’t want to brag, but the dude slept all night. In his bed. Okay, so I want to brag. I can’t even remember the last time he slept all night. I’ll go ahead and say that in this household five o’clock in the morning is all night long, but hey yay. Owen then came to my bed and actually slept a little longer. The struggle for him to go to sleep last night was also there. It took him several hours to settle. I will lay in his bed with him, but he wants to lay his head directly into my head, pushing on it hard. If it’s not his head it’s his feet on my head. He gets upset if I don’t let him push on me. There are a thousand emotions attached to these moments. I know he is looking for input, but he no longer wants me to do joint compressions or the different therapies that have worked before. Today I’m going to focus on the fact he slept all night. Since he came home from school his focus has been on when he is going to school again. “I have to go to sweep and den”, he says. He wants me to tell him all of the places he will go after each sleep. He does not like the calendar at all that I have set up for him. I try to show him which day he is on and what the next day holds, but he squeals at it and covers the days with his hand. He easily recites the days of the week and the months of the year, but looking at the actual calendar is still very upsetting to him. It’s literally one day at a time for us. I know the more I explain it to him the more it will help him. Through the rivers, the valleys, and the in-betweens I see growth. Never give up, know this is one moment in time. Keep pushing forward and look for the rays of sunshine. Smiles to all and donut daze!
“See the puppy say hi”, he squeals. Owen started jumping up and down and wanting to go down the street towards the corner. I knew where this was going and I had to hurry to get him in the car. This has happened before and the meltdown was escalating quickly. There was no one on the corner, but it’s the corner we’ve seen our neighbor at several times with her dog. Since he can’t tell me everything that he is going through I’m assuming it’s because they aren’t standing there and it’s on his mind. It could be for other reasons, but he can’t put it into words. I was able to convince him to get in the car, but he would not sit in his seat. He kept yelling towards the corner. I knew we had to drive away. I knew we had to get out of there before he went into a complete meltdown. I had to get him to sit down. I had to convince him that we needed to get to church for his program. And I had to not cry. The more upset I get the more upset he will get. He did not want to sit down. I kept asking him questions. I kept trying to stay cool. I finally got him to turn around and sit down. It seemed like an eternity, but I know it was only a few moments. He is growing and getting to the point that I can no longer carry him. I have to find ways to calm him and do everything I can to avoid meltdowns with him. Once he got into his seat I strapped him in as quickly as possible. He was still struggling to turn around to “see the puppy”, but I kept talking to him about going to church. I got us on our way. I still couldn’t cry. I still couldn’t let him hear my emotions. A few slipped out and he started repeating, “hi buddy hi buddy it’s ok buddy hi buddy”. It snaps me to reality. I have to be calm. I want to cry. I really want to cry. My emotions have to wait. I got him to church and I walked away crying. I can’t magically change where I live to help him with this corner and there is no promise that someplace else wouldn’t have its own set of rules that we would need to overcome. I breathe through these moments and try to remind myself this is how he can express his emotions for now. I was on edge for the whole rest of the night. I tell myself the same thing I tell him, we need patience and understanding, and together we can get through anything. He didn’t even mention the corner or the puppy this morning as we stood to wait for his bus. I hug my baby tighter, I tell him I love him, and that everything is going to be fine. Find your strength, know that you are amazing, and today is one moment in time. Smiles to all and donut daze!
Owen knows exactly what he wants to do and exactly when he wants to do it. He also wants to discuss it constantly. Each day has a special meaning to Owen and he wants to make sure his schedule is exactly as he thinks it should be. Routine means everything to him. This is one of those things that I have to stop the train, but I don’t even know what station the train has pulled into and how it got there. When I pick him up from school his immediate response as soon as he sees me is “I have to go to sleep first and then”. He wants me to tell him his schedule for the next day and the next day after that and the next day after that. I go back and forth on how to handle it. Some days I answer his question the hundred times in a row he asks me, other times I try to distract him, and now I’ve put together a calendar for him to know his schedule. There’s a right answer here somewhere, but I don’t think I’ve figured it out yet. The more I ignore or try to distract him from the question, any questions, the more he asks the question. I try to ignore it, I try to move forward from it, and then my response comes out automatically. After a while you want calm and the words tumble out before I can even think about remaining silent. I can see behavioral changes in him when his schedule does not go according to plan. Adding a holiday during the week or a day off for any other reason throes Owen completely off. The release of his energy may not even come on the day that he has a holiday, but at a moment in time later when he can process it. For today I’m trying the calendar route with him. Hoping he can make the connection with it and this will make it easier for him as he grows. For the love of Owen, I’m growing and learning too. Autism is as much about how I handle it as it is about him having it. Know that you are a lot stronger than you think you are. Make today matter. Smiles to all and donut daze!
I'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart.