Back to the dark we go. For the last few days, Owen has not wanted the lights on. When we wake up he generally runs to turn on the kitchen and living room lights but in the last few days he hasn’t wanted them on at all. We have gone back and forth with this over the years. He would prefer the lights to be off in all the rooms. Over the years it has caused more meltdowns than I can remember. If I walked into the bedroom to put something away and turned on the light screams would echo from the other room. Owen would come racing around the corner to turn the light off. There are still days he does this. His words were very strong compared to yesterday. He talked to me in more of a conversation form. He looked at all the language options one of his apps came in. He told me, “we speak engWish”. He went on telling me about German, French, and “es span you”. I believe he understands more languages than he speaks. Almost on cue, he brought me his tablet wanting me to find a Disney show in German. He wanted me to use the voice-activated option and I told him he would have to say it. He found the video he wanted to watch. It never stops to amaze me how much he comprehends in other languages. He didn’t eat that much all day but he asked for waffles for breakfast. I had already started making biscuits and gravy. He’s had them before and liked it. I told him if he didn’t want the biscuits and gravy I would fix him a waffle but he had to try the biscuits first. He took one sniff and ran. They were then met with huge screams and him running from me. I made him eat one bite and then he sat at the table devouring the food he screamed about. This is one of the reasons it is so hard for parents to keep expanding food choices for kids with sensory issues. It’s hard to make them try something when every single aspect of the food is scrutinized before eating it. Temperature, texture, color, shape, and the list goes on can all make it a challenge for my child to eat. I’m thankful he ate a huge breakfast. The journey is emotional, the smiles go straight to my soul, and all the emotions pack a punch but today we grew. Learn to take one day at a time, find your happiness, and make tomorrow matter. Smiles to all and donut daze!
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“Groceries”, Owen said. The knock came on our door. I have our groceries delivered and it makes it so much easier for me. I had told him they were on their way. I brought them off the porch and I had Owen help me carry them to the kitchen. It’s an emotional journey for both of us. He doesn’t completely understand directions like “put the bag on the floor”. He ran back and forth through the kitchen, getting more upset when he couldn’t figure out where to put the bag. This is where I have to push through my own emotions. How is it possible that we both are going to cry over a bag of groceries. But here we are. I need to work through each step with him. I handed him another bag as he came back towards me. He still didn’t understand where he needed to set it down. No matter how many times I explained it to him. This time he dropped it on the pile and then sat on the couch. He was done. He used more sounds than words throughout the day, with me almost begging him to use his words. I wanted him to talk to me. I wanted him to stop yelling. He didn’t. Some days the words are hard for him. He can’t always connect to what he wants to say and his need for sensory input is greater. He woke early and we went to bed really late. I dread bedtimes. They take hours. And supplements of any kind for sleep become ineffective quickly or make him moody. One day at a time I think. My emotions seemed thick today but it also seemed like Owen’s were heavy as well. All we can do is keep moving forward. Know that today is a stepping stone for tomorrow. Smiles to all and donut daze!
I was sitting on the couch when Owen walked around the corner and he crawled up in my lap. My morning was made. He had slept a little later than he normally does and immediately came to me when he woke. It’s always wonderful when our days start calmly. We eat pizza for dinner. Owen also wore pizza at dinner. He’s growing again. He ate more than half of a deep dish frozen pizza we had. He was almost done with what was on his plate so I got up to get him more. When I went to put it on his plate miraculously there was more on his plate and a lot less on mine. He was enjoying it one might say. He was extremely hyper again, asking for his teacher in almost every breath he took. He wants me to tell him when he will see her again. I try to make him tell me. He knows the days of the week and he knows his routine. And sometimes I want to sit without any noise going on in my head. I think about all the things I didn’t accomplish today instead of the miracles I see in front of me. Stress is a beast some days, most days. I’m sitting here with wet hair after it took Owen over two hours to fall asleep. All I can do is pray he doesn’t wake up until my hair is dry. My hair is such a meltdown trigger for him and he hasn’t seen it completely wet in years. I have been working with him trying to explain that mommy can have wet hair like him but he doesn’t want to hear it. I have been trying to build his tolerance up for my hair being wet by showing him sections of it wet when I run it under the faucet. This has not gone over well and it’s hours of him screaming or pulling my hair. So more breathing for me. I remind myself how far we’ve come and tomorrow will be a brand new day. Focus on the positive, don’t let the negatives slip back into your daily world, and know that you are stronger than you ever thought you were. Smiles to all and donut daze!
You go along swimmingly and then bam brick wall. To say Owen was hyper tonight is probably an understatement. And in complete need of sensory input. Chewing everything in sight, bouncing on all the furniture, rolling around the floor, and licking my shoulder was how our evening went. Until I asked him to read a book with me. I was amazed at how well he stayed focused on it. He didn’t try to walk away the whole time I was reading it. I took my finger and moved under each word sounding it out and letting him read with me as he could. It was a book he wanted, that he requested. He knew the repeat words when I got to them and was excited to “read” it to me at that point. He loves books but he also gets overstimulated and overwhelmed by them. I have to introduce new books slowly with him. If I push any of them, even ones he wants, they are put on a shelf and he is done with it until he can process it. But tonight we read his new book and that’s all that matters. For those moments we read the pages he was calm and then he was back to full speed ahead as soon as the last page was turned. I am thankful for his growth, I saw it on each page that we turned. I make sure he understands that we both have emotions and some days are harder than others but we have to work together to get through them. Some days I beg him to use his words with me an other days they seem to flow easier. At dinner, I worked with him on the L sound, showing him what my mouth looks like when I say it. His Ls sound more like Ws but he actually tried to move his tongue as I did only he took his hand to try and move it into position. He is making great strides and the tomorrows yet to come will be an incredible journey. Never give up. The days may be long but the reward is out there. Keep moving forward. Smiles to all and donut daze!
“Scuse me”, Owen said after he made a burping sound. I think I might have gasped. I was totally taken off guard and beyond over the moon that he got it. He got it. He understood that he burped and we were sitting at the dinner table so he said, excuse me. I always tell him that you are supposed to say that if your body makes certain noises. I also explain to him that people will tell him “bless you” or some form of it when he sneezes and that he can say it to someone when they sneeze. There are so many underlying rules that I get lost in trying to explain how they work to Owen. But here he is growing and learning and making his momma’s heart soar with pride. When I was giving him his bath I asked him to spell words with me. His response is always “no” when we first start but I always try anyways. I asked him to spell “bath” first. He was not into it but with me sounding out each letter he spelled it for me. I moved on to “water” and he answered slowly but got the letters right. I kept going. “Soap”, I said. And there he went again. I tried “bubbles” but I think I was one word past my luck. He spelled it but it was with me saying the letters. It didn’t even really matter my dude spelled three words while taking his bath, and not really upset about it. These are the moments I rejoice, I reflect, and I praise God. The doctors told me Owen might not talk, I know they have to explain this but it’s still hard to hear. But I told Owen I knew he would be able talk. I tell him every day he is amazing. I want him to believe in himself and know that he accomplish anything if he sets his mind to it. Today is the first day of the rest of your life. Yesterday does not have to control your future. Smiles to all and donut daze!
“Veggie straw”, Owen said, as he stuffed a handful in his mouth. He wanted me to get him more before he even finished what was on his plate. I can’t convince him to pick up one at a time so generally, he drops several out of the handful he is holding. When they fall to the ground I very rarely see a connection to the fact that they even fell. Every once in a while if it’s the last one he will pay attention to it but otherwise, it seems like the floor isn’t in his realm. If he does happen to notice that one dropped he will either pick it up and eat it or step on it, squishing it between his toes. He was mixed with emotions today, requesting his teacher every few minutes. I sometimes wonder if he thinks it will all be taken away from him again. Routine means everything and to not be able to have a schedule that works for him was truly hard. He thrives in school and loves his teacher. The progress is amazing already. But I see the anxiety of the last year hanging on to him as well. He sang a lot for me. He wanted to be in my lap, with me holding his feet while he did it as well. He wanted the input and he needed the pressure. I think he might be going through another growth spurt because that always seems like he wants more input when he has one. He is so incredibly strong. He’s also very flexible and can get his body into these pretzel moves like I’ve never seen before. I can’t wait to get him back into gymnastics. I still wonder when the right time to put him back into activities will be because I’m worried they will be taken away from us again. It would be devastating for him to go through this all again. For today I think about the progress and dream of what tomorrow will bring. He is accomplishing amazing things and I see his spirit soaring. Today is the first day of the rest of your life. Find your happiness and go after your dreams. Smiles to all and donut daze!
“Count to free”, Owen said. I had told him it was time to take his bath and he wanted to drag it out as long as possible. He said his teacher’s name more times than I can count. He wants the confirmation of what he is doing for his days ahead but it’s hard to explain to him what the days will bring when I still feel it might keep changing. I’m hoping that we can get back to our regular schedule but it all seems so hard to imagine right now and that routine no longer seems like our routine. I think about how hard all this has been on the world and on Owen in our little world. Some days I feel like he is really connecting to his surroundings and other days I beg him to use his words. He laid in bed for an hour making all kinds of squealing noises and rolling all over the bed. I try to hold him or do compressions but sometimes that doesn’t work. His own flip-flop moves seem to help him fall asleep quicker some nights. Although that still might be hours. He screamed for the blanket that was already on him, pushing it off himself only to pull it back up on him. He covered his head with it, still yelling about it and saying, “big hug”. I wish I understood why he wants to go back and forth with the blanket. He does this with other things as well, requesting something already in his hand like his tablet or milk. One day at a time I remind myself. I know he is making progress and that’s what’s important. He ate cottage cheese and beef steak for dinner. That right there is big time. We celebrate the littlest of victories because they lead to the biggest of steps. Celebrate your victories no matter how small they are. Make today matter. Smiles to all and donut daze!
When I breathe some days I don’t feel like I get enough air in my lungs to keep from crying. I train and retrain myself on how to deal with my daily moments of life. Owen was in sensory overload all morning. He needed me to sit and get in the same sentence. “Sit”, he yelled and without missing a beat, “veggie straw” came next. I tried to explain I can’t sit and get veggie straws at the same time. He yelled it again. He talked all morning about church but as soon as I wanted to get ready he wanted to sit on my lap. Sometimes when he crawls in my lap I wonder what he is thinking. Many times he needs sensory input and he wants me to rub his feet and do compressions on his joints. I get a little lump in my throat knowing that it took a long time for him to be able to give me the hints this is what he needed. Now he puts his feet in my hands and he says, “dis little piggy” from the nursery rhyme. The connection helped us both. I always wonder if he has fears or if he even understands fear. I know he isn’t scared of anything because he doesn’t understand something that could hurt him. Another lump in my throat and tears in my eyes. I think how do you teach someone to be more aware of their surroundings and that you have to be careful on stairs or squatting on top of the dinner table. One of the greatest parts of my day was hearing him harmonize with one of the characters he likes singing Twinkle Twinkle Little Star. When he sings in his natural voice he has an amazing pitch and tone. He doesn’t realize how well he sings. He loves singing and playing his instruments. He always wants to see the stage at church and I always tell him that he’ll be on that stage one day singing his heart out when he is ready. I want him to know if he believes in himself he can do anything he sets his mind to. Believe in yourself and dream the big dream. You can make it happen. Smiles to all and donut daze!
Don’t put veggie straw between your toes, don’t pull my hair, don’t, don’t, don’t. I say the word don’t a thousand times a day and it comes out before I can even think through the phrase. You would think after years of watching Owen put food in between his toes it would no longer shock me but every single time he does it I’m shocked, still. And you would think I would be able to come up with a better word. “Don’t” is a negative and I wish I would lead with a positive or rephrase it but that takes a lot of brainpower that I’m too tired to think about. We listened to Christmas music and he talked about Santa. He’s making more connections to words and wanted to read the captions under the videos. I am showing him the containers of food he likes so he can see the words. For years I tried to not let him see what the containers looked like because he would associate the food with the box and with his sensory issues I wanted to be able to give him multiple brands and use them at different times. He can quickly tell the difference between one brand of chicken nuggets versus another. Even something like the temperature or texture of food can immediately cause Owen to not like it so we work through foods at numerous temperatures and add different textures together so he can feel how it all works together. He prefers crunchy foods best but he’s learning to like more. I’m learning and growing too. Every day I tell Owen he can accomplish anything he sets his mind to. Find your passion, be inspired by the world around you, and make today matter. Smiles to all and donut daze!
Have you ever gotten something off a refrigerator shelf only to have it fall to your feet with all its contents? I stood back and laughed, telling 2020 to move on with its bad self. Luckily the jar I had taken off the shelf was the only glass item. The day was a spiraling mess, one thing after another after another, and then some more. My internet finally started working a couple of hours shy of almost a full day. I fixed Owen's dinner. I had been stress-snacking all day so I wasn’t very hungry. I put apple slices and caramel sauce to dip them in on the table. I went to the refrigerator to get a drink and I hear Owen starting to squeal. It was escalating fast. If I don’t catch a meltdown by this point I know that it will be really hard to stop it. Before I could even walk back to me he was in front of me holding the bowl of apple slices. “Throw it in de trash”, he said. He went on, “apples”, he squealed. So, okay, when did apples become a meltdown food I’m not sure. He almost made it to the trash but I saved them. I had not seen this reaction to apples. Bananas yes, apples no. I sat down with the bowl and explained mommy didn’t ask him to eat them that I wanted to eat them. This still did not sit well for him. I picked one up to show him. He started gagging. At this point, I knew I needed to put them up. There used to be many foods that would make him gag even if it wasn’t in the same room as him but I’ve worked with him to desensitize him from smells and textures. We still have a ways to go but one step at a time. Last week when I had an apple with caramel he took a bite of it and didn’t like it so somewhere along the lines, he decided he didn’t like them or he became sensitive enough to them that now they make him gag. I walked into the other room to get something and when I turned around Owen was squatting on the table finishing his dinner. My heart dropped. It’s a drop leaf table and here he was on it. All I could do was pray he didn’t fall until I could get him off. We sat in our chairs to let him finish his dinner and I drank my tea. It’s truly a journey like no other. I’m thankful every day for Owen’s smile and his growth. Be motivated by the promise of tomorrow. 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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