Some days I reflect more on the days before, trying to remind myself of how far we’ve come. I’m staring at pictures Owen drew one after another pretty much trying to avoid going to bed. And I didn’t want him to stop either. He wanted to draw different characters from the programs he watches. I showed him how he could trace around a cup to get a circle. He wasn’t impressed with that and it kind of made him mad. But hey he was drawing. Yesterday when he was at therapy he actually drew a smiley face for one of the therapists. It’s something she’s been working on with him since we started going and there it was, he did it. I go back and forth on my emotions, trying desperately not to think about the forward and backward progress. He could write his letters and numbers on his own with a light touch at his elbow and then it seemed to disappear. More sips of coffee to work through that one. I started painting with Owen about three years ago hoping to work on his fine motor skills. He has low tone in his muscles. He’s as strong as an ox but holding something like a crayon is very hard for him. I remember when he was very little I would be sitting on the couch and then my feet would leave the ground. He would push the couch up with his feet. It was a heavy couch and then me on top of it but he could still push up the end with his feet. I knew he was starting to feel better and this morning proved it. He woke up early, got up without any discussion about him going to the potty, although he did tell me to sit, and then asked for cereal, veggie straws, chocolate milk, and waffles. And pretty much ate everything I put in front of him until it was time to get ready for school. He was so happy to see the bus when it turned the corner. He kept telling me which way they were going, pointing in different directions. It still thrills me to see him point. When he got home from school he had one point to make and he made it all night long, tomorrow he is seeing grandma. He didn’t want me to forget it. He repeated it nonstop for what seemed like days but must have only been a couple of hours. I finally joined him, repeating “grandma”. He stopped and told me to “behave”. He followed it up with, “something went wrong please try again”. And that pretty much explains life. Tomorrow is a brand new day. I remembered to breathe today. Find your strength, push forward, and know that you can accomplish all things if you set your mind to it. Smiles to all and donut daze!
One stoplight and it can change your whole day. And then it’s like I want to crawl in a whole hole with Owen’s emotions. I try to remind myself that every single thing in the outside of the car world is up for discussion and worry for him. There are a few houses that are going to be torn down because they are building a new road. The doors were left open on several of them. Every time we go by them Owen gets upset that the doors aren’t closed. I try to find ways to explain this to him but it upsets him further. We went to his therapy appointments today and where it is located gives me two options to get there. The long way that takes even longer now because of construction and the stop and go upsets him or the shorter way that will have construction on it at some point but for now has these abandoned houses. My heart aches for him that he can’t understand. I thought we were making progress when I told him that we had to ignore the lights if he wanted to go anywhere but now it seems we have come full circle. And then it started to rain. One of Owen’s all-time favorite songs is The Wheels on the Bus. The only thing is he likes to sing about the wipers going swish swish swish but he does not like to see the wipers going swish swish swish and he doesn’t want to see any rain on the car. But he loves puddles. He even tells me “I love puddles”. It’s so exciting when he tells me his likes. We sat and ate dinner together. He finally seems like he is eating better since he was sick. We had spaghetti. He even ate it with the fork. I gave him some bread dipped in the sauce and he really liked that. When he was getting ready for his bath he stood in front of the mirror and talked about his eyeballs and eyebrows. I asked him if he could raise his eyebrows. I showed him what I meant and he stood in front of the mirror not realizing he was doing it on his own and took his hand to raise his eyebrows up and down. I’m smiling at the progress. The days are filled with victories and emotions but the most important part is making sure he knows I love him with all my heart. Tomorrow is a brand new day. Celebrate your victories no matter how big or small they are. Smiles to all and donut daze!
Owen decided what he wanted to wear today. He wanted to wear his “sweatpants”. He’s asked for them a couple of times but I didn’t have them clean. Summer weather is fast approaching I need to find an alternative to sweatpants that he might like. He went on to his blue shirt and blue shoes. He wanted “brown socks” but he doesn’t have brown socks. He’s been asking for different colored socks so I ordered some for him and we’ll see how he likes them. He’s also been asking for “bunny socks” but I haven’t found them yet. Changing seasons are hard on him because shorts to pants have always been a hard transition for him. He has an even harder time with what I’m wearing. He wants me to have home clothes and going out clothes. And then he needs to have me in a specific style of clothing when I am in those different locations. Now that I understand it more I’ve been trying to change things up for him more often. He gets used to seeing me wear one style of clothing through a whole season and then when he sees me in something different it’s out of context for him. I can’t tell you how many meltdowns my clothing or lack of me wearing my glasses have caused. I have to be the picture-perfect version of me. One step at a time I remind myself. We’ve come so far. He will let me wear my hair back without trying to rip my hair out of the holder but my hair still can’t be wet. “Turn it off” he yells when he sees my hair wet. I’ve been trying to slowly introduce my hair in different manners for him but it’s hard on him. He heard the rain outside about the same time I did. “It’s raining today”, he said. It still amazes me when he says something in the moment and it being relevant. I’m thankful for those connections. I got his bath ready and he likes me to run the shower at the same time. He kept saying, “it’s too hot”. I knew he meant he wanted the water to be hotter but he always says the opposite. I am trying to show him the difference between the temperatures but he hasn’t quite grasped it yet. I know it will come. My sweet baby O is growing every day. Today is the stepping stone for tomorrow. Celebrate the little steps because they will lead you to your greatest victories. Smiles to all and donut daze!
I suppose we slept better than most nights but every night he still comes to find me. He immediately went back to sleep and asked for chocolate milk at the same time. When he woke up he was ready to get his day started. He didn’t want to go to the bathroom until I said the magic words, no bathroom no school. He immediately runs off to the bathroom and there you go. I told him to get his shoes. I asked him if he wanted to wear his red shoes and he replied, “no red shoes today”. I told him several times to get his shoes and he didn’t get them. So I told him that if I had to get them he would be wearing the red shoes. That got his interest and the blue shoes were magically in front of me. So this tells me several things or things that I can overthink about. He doesn’t like red shoes, he doesn’t like these particular red shoes that are a different brand from the blue ones that he does like, or red isn’t the go-to color no matter what shoes they were. I’m sure I’m missing some points but I’ll save those for overthinking on a rainy day. He was so happy as we were walking to the bus stop. The moon was still big and bold. I love hearing him talk. He said, “it’s the moon up in the sky”. He was right, it was there. His little country accent is so pronounced when he says certain words. His “the” is said almost more like “dee”. I can tell they are working with him on his sounds and letters. His spelling makes me smile. It’s said with such certainty and even though he only gets half the letters right. “Yellow”, he said, “yeeeee”. I gave him his bath and when the water was draining out he touched it and said, “I love puddles”. I thought oh how true that is. He is my puddle seeker. He fell asleep quickly tonight. I still don’t think he is feeling quite himself but much better. He drifted off to sleep talking about going to school tomorrow. I’m thankful for his big smile and the joy he brings me. Find your joy, share your smile, and know that you are important. Smiles to all and donut daze!
I don’t think I’m awake yet and it’s been a very long day. Owen woke in a great mood and ready to get to the bus but only after he told me to sit multiple times and he was not getting ready today. “No get ready”, he said. I told him that if he didn’t get ready he couldn’t see his teacher. It’s amazing how fast he went to the bathroom and wanted to get dressed. It makes me happy to know how much he loves school and his teacher. He is thriving. When he came home from school he seemed a little quiet to me and we spent a lot of time this evening sitting. I think he was extremely tired because I convinced him to take his bath early. He was not pleased but he went anyways. By a little after eight, he was asleep. He has a few more days on the antibiotic and I’m hoping it will all get out of his system. He didn’t want to do too much this evening besides sitting. He played on his tablet but he still seemed pretty reserved. When we were eating dinner, which he didn’t eat much of, I asked him if he wanted to draw like he did yesterday. He told me no but started listing off things he could draw. When he was done eating I gave him the notepad. He drew Donald Duck he told me. He wanted me to hold the pen but I had him do it. He drew some more lines and he told me he was done. Hey, I’ll take it. For him to pick up the pen on his own, even if I suggested it that’s huge. After his bath, he stood there for a moment and then hung his towel up. He started asking me for different shirts he was going to wear. I showed him a couple and he decided on the one with the rocket ship. These moments feel huge to me. I’ve waited years for our interactions and to have him interested in what he is wearing is incredible. I never imagined how far he would have come in such a short amount of time. His joy is shining through when he talks to me about everything and it makes my heart sing. Never give up on the hope for tomorrow. Miracles happen every single day and I’m thankful for mine. Find what makes you smile and keep moving forward. Smiles to all and donut daze!
We slept. I would like to say all night but Owen kept waking up to come to find me. The only thing I was right next to him in his bed. I knew that was the only chance for getting as much sleep as possible. He even slept late. We both needed it. I’m still exhausted and he fell asleep tonight in under ten minutes. Let the miracles keep happening. When we got up he was very calm and alert. I made some biscuits thinking he might like them. I had him try a bite and before it even got to his lips he started asking for waffles. I knew I was pushing my luck trying apple butter with him but I still had to try. I melted some cheese on one and he still wanted nothing to do with it. But when his waffles were done he devoured them. Owen had reminded me multiple times it was church day. And then he said, “don’t forget church”. I asked him to say church again trying to get him to say the ch at the beginning and end. He said, “I can’t translate to the English yet” and promptly said church in French. He was playing his Cajon drum this morning and I turned on some music for him to play with. I said listen to the beat. He immediately slowed down his playing to accompany the music. I’m fascinated by how much he already understands rhythm without ever having a real lesson. It’s in his soul. Yesterday we work on his letters, numbers, and drawing his choices. I left his notepad and pen on the table. He was writing on it and telling a story about it. He had watched a video of someone drawing a Mickey Mouse face. He took the notepad and paper and started drawing on it, telling the story he heard when they were making the drawing. I started crying. He doesn’t do this on his own. He always needs to be prompted and assisted so this was huge. These are the moments I rejoice. His new request was “grey socks bunny socks red socks brown socks” and “getcha some more sweatpants”. I keep telling him I need to get him more sweatpants. It seems like that is the go-to request when he gets dressed now and I think he might want socks to match. As the day wore on he did so many amazing things. I burst out into tears sitting at the kitchen table overwhelmed with everything that was going right and wrong. He ran to me and simply said, “crying”. It made me cry more, thinking about all the victories we have had in the last few months. The tears had already started to flow and here they were running down my face. Owen always seems to put it in perspective for me though and I have to remember to focus on the bright side of life. Today was a great day, an exhausting day, but a great day nonetheless. Cherish the smiles that keep you moving forward on your path to success. Smiles to all and donut daze!
Is two in the morning consider day or night, I really don’t know anymore. It all seems to blend together. Two days of not having routine means Owen is in full makeup mode. He kindly told me that he was going to grandma's. And by kindly I mean all night long. If I forgot he was there to remind me. I did not know this but you can put the syllable sound on every single letter of the word grandma and make it sound completely like grandma at two, three, four, and five o’clock in the morning. I informed him that if I didn’t get some sleep he wouldn’t be going to grandma’s and he said, “I want chocolate milk please”. I told him that it would be a few minutes. He brought me the chocolate syrup. The last couple of times I’ve ordered for our grocery delivery they didn’t have chocolate almond milk so I’ve been making him chocolate milk by adding the syrup. When I was pouring the last of the chocolate milk that I made into his cup I said, “it’s the end of the chocolate milk”. He said, “oh no what we gonna do”. I thought remember you brought me the syrup earlier we’ll make some more. We sat eating our breakfast and he dropped his tablet on the ground. I sat here in amazement as he tried to pick up his tablet with his toes. When he got it partially up he leaned over to get it. When I was awake enough, after a couple of pots of coffee and a few catnaps we made the track to grandma’s. On the way there I asked him lots of questions. “What color are your shoes”, I asked. “Red”, he told me, finally wearing the new pair I got him so he would be able to choose which ones he wanted to wear. When I got to the color of his shirt he said, “green it’s a jacket”. He was right. He was wearing a shirt underneath it but he couldn’t see it. I explained that he had his grey shirt on underneath. I asked him what color his hair was and he said brown. I moved on to what color mommy’s hair is and he said, “yellow”. I’ll take it. I had him add numbers for me and it felt like math was clicking more for him. He wasn’t guessing, when he said the wrong number he changed it to the right one. When I picked him up from grandma’s I could tell he was exhausted. I told him I didn’t know which one of us was crankier. He said, “err err”. I told him he wins. There were so many new connections for him today and he took instructions well. I asked him to go get me the broom that I left by the front door, wondering what would happen because only a few days ago he had trouble finding something else for me. He quickly ran to the front door, looked around it, and then brought me the broom. My heart leapt for joy. Today was full of emotions and victories, sleeplessness and gratefulness, and a whole lot of tired love. Tonight I have a feeling church will be on Owen’s mind. Let the world see your smile even on the rainy days. Smiles to all and donut daze!
First of all, I’m so glad my sweet baby O is feeling better. Second of all, I’m going to remind myself that Owen is feeling better. And that means at three o’clock in the morning he proudly announces that he will be going to school today and then tells me he is going to grandma’s on Saturday and church on Sunday. At five o’clock in the morning, I might have been a little more excited. I would have been downright jubilant at six o’clock but three o’clock in the morning I was just plain tired. The good news he was feeling better. Since I wasn’t quite as excited as he needed me to be he decided that I should hear about it approximately two point two seconds after he told me the previous time. That went on for at least thirty minutes. You can’t stop a moving train. I told him he needed to go back to sleep. He told me he needed milk and apple juice. He decided that I was going to be more excited about this and proceeded to ask for it until I finally got up. He immediately told me to “sit” as he always does when I’m getting up. I told him that I couldn’t get him a drink if I didn’t get up. I gave him a sip of apple juice and tried to convince him to go back to sleep. He reminded me that he was going to school today and he was going on the bus and they were “all going to turn right”. I can tell you I am beyond thankful for the people in my son’s life. Tears are floating in my eyes thinking about how blessed we are. The bus driver for his afternoon bus does a wonderful job helping him understand where they are going and by doing what she does she is also helping me. Owen gets upset in order and routine doesn’t always happen but he also loves riding the bus. And order and routine don’t always go hand and hand with riding the bus, for that matter riding in the car, everything changes. But thankfully the morning and afternoon bus staff give their all to these kids. When he walked into the house he went to the kitchen. He said, “it’s the kitchen”. There is such a joy hearing him state things. It’s like he is seeing things for the first time and telling me exactly what they are. My heart soars with his words. I was trying to decide what blanket to try for him, pushing ahead of my own overthinking. I asked him which color he would rather have saying, “brown or blue”. He said, “blue”. I phrased the answers saying, “blue or brown” and I knew what the response would be, “brown”. He always answers with the end answer. We are trying to work on this. I went with blue. His two favorite blankets are blue so I thought that might help. We shall see how it goes when it arrives. As we were getting him ready for bed I asked him, do you know what a kite is. Without hesitation, he said, “it’s up in the sky”. My heart smiled. I felt my heart smile. Today is one moment in time. The joys erase the three in the morning wake-ups and I know that tomorrow my sweet baby O will soar like a kite up in the sky. Never give up on the hope of tomorrow. Cherish the dawn of a new day. Smiles to all and donut daze!
What’s today and how did it become so late. It seems funny to want more hours in my day when I’m exhausted all the time but maybe I’d get some sleep if I had the hours to do it. I’ve spent an hour looking at weighted blankets. The same blankets that I constantly try to give to Owen and he doesn’t want. I keep thinking if I find the right blanket, in the right material, that hangs over the edges on his bed it will help him sleep better. I feel like I need help from Scooby and the gang trying to solve the mystery of the weighted blanket. He’s never been a fan of them or anything weighted. He has a hard time taking off clothes but one of the first things he learned to take off was a weight vest that one of his therapists had us try when he was young. He was able to pull the velcro apart and off his head, quick too. He much prefers softer, lighter, fluffier blankets that tend to wad up in a ball. I keep looking at the weighted blankets that have a soft feel to them but then I can’t find the size I think he should have and then I get totally distracted and look at something not related to what I’m even looking at. Maybe that’s where the second hour goes. So many choices and that’s only thinking about one blanket. Owen slept a lot in the last day. When he woke up this morning he seemed a lot better. He was still in slow motion but after one dose of antibiotics, he was more like himself. As the day wore on I could see the sparks happening for him and compared to yesterday it was already night and day. He was sitting at the table when I heard him say, “ambulance ambulance it is an ambulance hear it firetruck next”. He could hear a siren outside. I sat there and cried. He paid attention to something that was happening right in that moment and was able to express his words. I don’t know that this feeling of jubilee will ever stop when I hear him make these beautiful, brilliant connections. The stomping everywhere was in full swing today. I can tell it is a sensory need for him. I can also tell that if he keeps it up I’m going to need some reinforcements for the beams in my basement. He’s still slim for his age but he is starting to put more weight on. The more weight, the heavier stomping, the more the house is shaking. It’s something I never even considered but I can tell it will be something I overthink about. For as sick as Owen was yesterday I’m thankful for his spunkiness today. A few more days on the antibiotics and he should be all better. By the second dose for the day I could tell it was really helping. And he knew it. He said, “no sick today”, telling me he was going to see his teacher tomorrow. I cried happy tears today to make up for the sad one I cried yesterday. Let the song in your heart guide you to new wonders that will inspire you. Smiles to all and donut daze!
There is nothing that prepares you for a sick child. It’s emotionally draining. And when your child doesn’t understand what sickness means it’s even harder. Years ago I told Owen’s doctor that I was so happy he was able to tell me in his way that he wasn’t feeling well. He made the connection that if he sang “momma called the doctor and doctor said no more monkeys jumping on the bed” that I would know he wasn’t feeling well. I went on to tell her that it was emotional saying I was happy that he could tell me he was sick when he wasn’t feeling well. But those same rollercoaster of emotions happened last night. As Owen was falling asleep he made a coughing sound. I immediately knew it was going to be a rough night but prayed I was wrong. Almost every April the runny nose sinus stuff he had turns into an ear infection. He woke up a couple of times by midnight kind of disoriented but I got him back to sleep and then at one he came to me and crawled in next to me. He was hot. When he rested his face on top of mine I could feel the heat in his ear. I gave him some medicine, took his temperature, and got him back to sleep. He was running a temperature and it wasn’t long before we were up again. He threw up. My sensory baby does not understand this at all. I don’t want to even think about it. The one thing I have tried to avoid all my life is throwing up and as a sensory kid, well, he doesn’t understand that he shouldn’t touch it. How many sips of coffee can one take because I don’t want to think about it. So to the couch, we went. We laid there for a few minutes and then he said, “I’m sick no school today”. My heart crashed and was elated at the same time. Tears float in my eyes thinking about the huge progress in that one moment. School is everything to my sweet baby O and for him to realize that he was sick and sickness meant he wasn’t going to school was like a million steps forward had been marched. He went on to say, “I’m sad”. He’s learning how to process his emotions and there it was his emotions. Again huge. He continued telling me that he needed to go see his doctor and “ride the elevator”. When his doctor’s office opened I called to make his appointment. He was ready to go before I had even made the appointment. When I told him it was time to get dressed he said, “grey shirt” so I let him wear his grey shirt. I was about to put on his jeans and he said, “no sweatpants please” He then started talking about wearing his sweatpants. To say the least he wore sweatpants and a grey shirt to his appointment. He did well at there but was very lethargic. His doctor saw his ear was red and prescribed an antibiotic for him. Luckily his fever had gone back down and has stayed down. She gave him another medicine to keep him from throwing up and it is working. He slept most of the afternoon, woke up cranky, drank some apple juice, and then he took his bath. He said he wasn’t going to bed but within five minutes of being in bed, he was out. In the sadness of him being sick, I still see progress. There were numerous connections he made that will help us moving forward. I pray that he sleeps through the night and tomorrow he will feel a lot better after getting a few more doses in him. The growth that Owen is going through is amazing. His doctor was impressed with his progress as well. Never give up on the hope for tomorrow and dream the possible dream. 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.