I want to hang the gone fishing sign out and be done with the day. I can’t even imagine all the emotions Owen has and can’t express. Or expresses by his outbursts and cries. I can see him still grasping at anything that seems like something to him. He couldn’t stop repeating “wanna get ready” to me as he was drifting off to sleep. He wants to stay on the go and I can see him wanting to explain it all to me but doesn’t know-how. I still don’t know how to explain it to him. I can see it affects him still by not being able to see the people he wants to see. My heart aches for him even more. I keep telling myself we are close to the finish line, but then getting him back into a swing of life that took years to get him into may not be so easy as well. More emotions as the people that left his life enter again. And of course, it’s no fault of there’s but he doesn’t necessarily put that connection with it. All I can do is one day at a time. He wanted a lot of interaction with me tonight, having me repeat the words and actions he needed to hear. I know it helps him process, but I still try to distract him from constantly repeating his words. He will say the exact same thing over and over again for twenty minutes or two hours. It’s all the same to him. And me, I’m begging him to move forward. I saw a lot of growth today though. I can tell he is figuring out how his body works and getting stronger every day. I’m thankful. My emotions sat heavy today as he yelled many times at me, screaming if I would ask him questions or try to talk to him. I kept pushing forward. Some day that’s all we can do, keep pushing forward. Make today matter. And know that you can do great things if you set your mind to it. Smiles to all and donut daze!
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It’s funny today is one of those days I’ve done anything but focus on things. I started writing this very early this morning, got a couple of words done, and then it seems like one thing after another. And now it’s bedtime, past bedtime. The potty train has left the building on some aspects even though Owen is still doing great with it. He truly does not understand how his body works. I have to block it out because it gets emotional thinking my eight-year-old is struggling with going to the potty. Rinse, repeat, save that for another day of emotions. Focusing on the good stuff, that’s what today needs to be about. Owen interacted with me in many ways. He felt really connected to the world and was very bright-eyed and alert. That doesn’t always happen. Some days it feels like he is very remote or detached from the present like he can only concentrate on one thing at a time, not letting go of it, and then it consuming his whole day. But today was also one of those days that felt like what was old was new again, for numerous things. When Owen was younger he would take my hand and move it to do different actions on his tablet or any activities we would be working on. It was like he didn’t quite know how to use his hands so he would use mine. He had not done this in a very long time and then a couple of days ago he started coming to me, taking my hand, and having me do the steps of the activity again. Today it was numerous apps and steps that he wanted me to perform. I try to encourage him to still do them using his hands, but that frustrates him. When he washes his hands he never tries to put his left hand in the water. He would rather it stay dry. He will also leave his shoe and sock on one foot and remove it from the other. He will walk around like that until I either help him remove it or encourage him to take it off. His doctor believes it is because of his sensory issues. We laughed, we learned, and we loved today. And that is what matters. Find the positive side of life and know that today is one moment in time. Find your strength and keep moving forward. Smiles to all and donut daze!
A thousand times I asked a thousand questions and I was ignored a thousand times. Okay, so it was probably ten times and Owen was not so much ignoring me as he may not have been able to process that I was asking him a question or that he needed to respond to me. Any which way it can be emotional. And then he walked up and licked my arm. He used to do that all the time. He’d walk up, lick my face or my arm, and walk away. What’s old is new again. It’s a sensory need I’m sure, but here I sit in my own emotions. He got mad at me because he wanted me to find a video with the voice-activated option, but he wasn’t saying any words and he wasn’t opening the microphone. Instead, he was pointing to a blurry picture of a video. He already had it on the screen and he wanted me to find the exact same thing. I try to explain to him if he has it open that he doesn’t need me to find it, but that was met with more screams. He does this constantly. He loves the voice-activated command, but doesn’t understand yet that it can translate his words if he says them clearly. In general, we’ve had a good day, except the extra high pitched squeals that have come randomly throughout the day, more than normal. I know he is still trying to process why we aren’t doing the activities that he loves. He started watching videos of the songs he sings at church. I was happy that he requested help finding them. He gets so excited when we talk about church and pray. I’m thankful that he loves going to church and that he is starting to understand the importance of prayer. I am excited to see his growth and every day is a gift with him. Through our struggles and challenges, I learn and grow. He keeps me on my toes, but his smile lights up the world and makes it a better place. Let the challenges of today wash away in the successes of tomorrow. Find your strength and know that you can do great things in our ever-changing world. Smiles to all and donut daze!
I can tell you right now there is not enough chocolate cake in the world. For that matter any cake, any cake will do. This past week has been emotional for me. After five years of waiting Owen finally has his spot open for the waiver program. But as they say, there’s always something. We are in a holding pattern to actually start the services and therapy he will be getting through the program. So we wait. One day at a time. I took Owen to visit his grandma for a few hours today. He loves going, but the car rides are generally difficult for him. He wants every stoplight to be green. And he voices his opinion about it. This can cause him a great amount of anxiety as we are driving. One of the lights I’ve labeled the meltdown light because many times it has taken hours away from our days. Sitting at that light completely and totally would shut him down. He would cry about it for hours after we got home. And it was a light that we couldn’t easily avoid, plus going other directions brought other emotions. We’ve worked through that light for the most part, but it’s only one part of the bigger traveling picture. I try to distract Owen through the lights. When he kept yelling for the light to be green I asked him to name five animals. He said, “elephant rhinoceros hippopotamus gorilla elephant”. I told him he said elephant twice and he quickly said, “chicken nuggets”. The boy’s got food on his brain. He’s had a great day. The hugs, the love, and the learning have been exactly what this momma needed today. He’s eating shrimp that he requested for his snack along with chicken nuggets from a drive-thru even though we are home now and veggie straws while rapping with the Endless app’s version of Old MacDonald Had A Farm. I learn a lot from my sweet baby O and patience is at the top of the list. I try not to stay rooted in the past, but like to reflect where we’ve come from. This is the little boy the doctors told me might not talk. Not only is he talking, but he tells me he loves me and that he wants shrimp. Through the challenges, we walk together and find the smiles of tomorrow. Never give up. Miracles happen every day and mine makes this momma proud. Find your strength and keep moving forward. Smiles to all and donut daze!
I want to hang the gone fishing sign out and let it be the end of the day. But Owen did great even on a hard day. And boy, oh boy can this dude eat. I would have to say growth spurt is happening. He asked for shrimp for dinner, no surprise there, but I had barbecue chicken for us. I know he likes it but he loves his shrimp more. I made macaroni and cheese to go with it and I sat it down in front of him. He immediately asked for shrimp. I told him if he ate the chicken he could have shrimp. He ate two full dinners. All the barbecue and macaroni and cheese went in a flash. Plus, he ate it with a fork. As the last bite was being devoured he asked for veggie straws and shrimp. I made him about a dozen popcorn shrimp, thinking there was no way he could eat them all, gone. He didn’t ask for anymore, but I have a feeling he could have eaten them. He was in full sensory overload tonight, wanting to jump and scream at the top of his lungs. Me, I wanted to go to bed early. He won. His body can’t rest sometimes. And my heart aches for him, wishing peace would wash over his body. He kept taking his head and grinding it into the pillow, turning quickly to chew on the comforter. I thought about the irony in the word and how many blankets, cushions, and clothes he’s chewed through. Shirt after shirt gets put in his mouth, holes chewed within a day. The couch didn’t stand the test of time and lost many a battle between him jumping and chewing on it. He’s already chewed an area of his new comforter tonight. I have different types of sensory chew accessories for him, but he has always preferred cloth to chew on. He fell asleep in my arms tonight, in his new bed, and then I snuck off to his old room. “Mommy’s room” is the best room to fall asleep in. For the love of Owen, I grow. The smiles he gives me push me through the moments of sorrow and worry. It’s hard watching him struggle when all I want to do is give him peace. He’s growing. I know he is learning and today through it all he listened well, which is not an easy task for him. Never give up. I look at my miracle every day. Through rays of sunshine, we will walk and through nightfall, we can regroup. Be the change you want to see in the world. Smiles to all and donut daze!
“Cowabunga”, Owen cries out. This always brings a little giggle to my day. I’m not sure what video he watched to learn this jewel, but nonetheless, it makes me smile. When Owen focuses on something all he can do is focus on that particular thing. I closed his bedroom door the other day, opening it to go in and out, but keeping it closed. This now has become his focus. I was getting no sleep at all with him waking up every night and coming to my bed. He has always slept better in my room. It’s darker, with brown walls, and there are probably other sensory reasons he likes it, so I’ve slowly been transitioning it to his room. He wants to sleep in “mommy’s bed” and we still call it mommy’s room, but now we have officially switched. He doesn’t understand that there’s now a dinosaur comforter on the bed instead of my bedding. It would take him hours to fall asleep in his old room and he’d still wake up almost every night coming to my room. Then it would take me hours to fall back asleep. In “mommy’s room” he sleeps more soundly and that’s what is important. I never dreamed I’d be switching rooms with him or that it could make this much of a difference, but with all his sensory needs I know it helps. I woke this morning with a terrible headache. I don’t get them like I used to, but here I was with a raging headache. Owen likes things loud, louder than loud, and he likes multiple things going at one time. I knew there was no way I could handle this so I tried to explain it to Owen. I sat with him, telling him mommy didn’t feel good, and that he had to work with mommy today. I explained about the volume and as the morning wore on he actually did really well and listened when I asked him to turn it back down. He came to me several times, getting close to my face, kissing me in the way he does, kind of an inch from my face, and I could tell he knew. It’s not always easy for him to express his emotions or explain how he is feeling, but today I could tell. Luckily, my head felt better as the day went on, but the weather has still kept my headache slightly hanging on. I’m thankful Owen was calm and he fell asleep quickly tonight. I like to sit and let the day wash away in the calm of the night. Some days my emotions wear me out, other days I get through them with lots of smiles and hugs. Today I’m thankful that my sweet baby O was happy. Find your happiness and share it with the world. Smiles to all and donut daze!
Today was one of those days that was years in the making. One of the best pieces of advice I was ever given for Owen was to make sure I rotate his food and to not let him see packaging. I have been doing this with Owen’s beloved “swrimp”, but tonight I saw how it all unfolded. He sees the packages more often now because I am trying to help him understand what he is eating, but I still rotate brands, styles, or flavors when possible. Tonight I fixed butterfly shrimp. He’s had shrimp in restaurants, but at home, it’s mostly been popcorn shrimp even though I used different brands. When he saw me cutting up the shrimp he thought it was chicken and the meltdown started. He wanted popcorn shrimp. I have to say though in the middle of his huge meltdown amazing things continued to happen. I kept talking to him about it being shrimp. He went to the freezer, got the shrimp box, and brought it to me. I showed him the picture on the box and the shrimp I was cutting into smaller pieces. He calmed some, I kept talking. I took the box back to the freezer and told him to sit down. He started eating his shrimp and he finished it all. At some point, he decided my chicken looked good too, and devoured the rest of the chicken that was on my plate. The clean plate club strikes again. I forget sometimes or maybe I put it out of my head how important it is to continue to change up Owen’s food. I do it all the time anyways, years of doing it, but nights like these prove exactly why I do it. He can immediately tell when something is a different texture, color, smell, temperature, and the list goes on. And then add in the foods that make him gag or go into meltdown mode to the mix. I can stand in the kitchen with Owen in the other room and I can instantly tell if I shouldn’t even try a new food with him. He will start making gagging sounds as I cook something. Some foods we work through to see if he likes them, we go through a slower introduction to them, and I also have a rule that he has to try one bite of everything, but when it is sensory related I don’t even make him take a bite. It’s a lot of trial and error and repeating the same steps to help him work through eating a variety of foods. Learning to cope with repeating is a chore in itself for me. It’s emotional to hear him scream over food. At eight years old it is still an everyday milestone to work through his food. I’m thankful he is a good eater and nights like tonight don’t happen every night. We’ve come a long way sweet baby O. When we come upon a stumbling block and we stumble we must get up and keep moving forward. Find your strength and push through the challenges that you see ahead. You can do it. Remember you are a lot stronger than you think you are. Smiles to all and donut daze!
When you ask for a waffle for breakfast you better ask for a double round of “swrimp” for dinner. Owen wanted a waffle for breakfast. I was kinda surprised that shrimp wasn’t the request, but he sure made up for it with dinner. I made shrimp for dinner, he ate it all plus some rice, went to play, and five minutes later the “swrimp pwease” request came in. I asked him if he wanted several other things and they were all a no. Shrimp it was. And he ate almost all of them. As they say, the night is still young the five left on his plate will probably be gone in a couple of minutes if I had to guess. He is currently laughing hysterically about vegetables flying across the tv screen. His laughter is contagious and no matter what mood I’m in when I hear him laugh it instantly changes me. “Blanket blanket”, he yells to me. He’s sitting on his blanket and he wants me to cover him. He does this a lot. I was putting him to bed last night and he kept asking for his blanket that was pulled up around him. I’m not sure if he asks for the reassurance of it or if he needs me to do something else about it and doesn’t know how to ask for it. He has a body sock that he loves. He can get in and out of it easily, but generally wants me to help him. It gives him the input he seeks on so many days. He was full of emotions as the night wore on. The shrimp got eaten, the tears were shed, and the screams were robust. He laughs when he screams sometimes, thinking it’s hilarious if I show any type of emotion as he does it. He would scream and then run to me requesting his beloved “chocolate milk” that was already full in his glass. He kept trying to get the container out of the refrigerator to have me fill up his glass, but it was already full. I wonder if he was trying to process asking for milk or if there was something else he was trying to get me to understand. He gets frustrated when I don’t follow the steps he asks me to do, but I can’t always follow the steps when it’s something that has already been completed. And explaining it brought more requests from him. So we breathe. The smiles outweighed the emotions for both of us and we will keep moving forward. I’m thankful for the interactions that I had today with my sweet baby O. He felt more connected today than he did yesterday even though we both had a lot of emotions. Learning to let go of the things we cannot change can be hard, but remember we can be the change we want to see in the world. Find your happiness, share your smile, and the rest will follow. 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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