Owen came to my bed at some point but then we slept the rest of the night. I’ll take it. Although he became the big burrito and all my covers were gone. He woke talking about his day ahead and that I needed to sit, bypassing a good morning of any kind. We got up and he was convinced I needed to sit. I tried to tell him I was not going to sit but he was not convinced. He came to me saying “belt” and then he told me he would say good morning to his teacher “help belt please”. I wore my camo pants but he wouldn’t wear anything but blue and he kept telling me that I needed to wear blue pants when he came home. Immediately off the bus, he started saying about me wearing blue pants tomorrow and that grandma would be in blue pants. He couldn’t process that I still had camo pants on. When he left for school he told me to have the blue pants on when he came home. I want to cry, I want to scream, I want to hold my baby until the world stops turning and blue pants can leave the train. It’s so incredibly hard knowing that he is going to be upset for hours because I wore camo pants to get him off the bus. He was both calm and agitated all night. He was watching a video This Old Man and I was dancing. He ran to me touching my hip trying to stop it from moving. Everything has to be the picture he sees and how it is supposed to go. And me moving or singing was not an option. The night went pretty quickly. When it was bath time he told me “take Elmo bath”. It took me a minute and I was like no. I told him Elmo couldn’t get wet. Then he said, “night night Elmo see you later Elmo no bath Elmo”. It was great to hear him having a whole conversation about it but sad as well because he couldn’t take Elmo in the bath. He fell asleep pretty quickly and I’m thankful that he was able to calm down after me wearing camo pants. One day at a time I remind myself. I spoke with a doctor the other day. I called to find out some information about what they do. The doctor said we want to provide hope to these children for their future. Hope, for tomorrow. I was thrilled with this. So many times I’ve been told the worst-case scenario instead of the best. There is hope. There is hope out there for tomorrow. Believe in the hope for tomorrow. Smiles to all and donut daze!
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I’m already dreading the end of June. I don’t want summer school to end. It feels like Owen is clicking into the routine perfectly and this makes me happy. He slept all night, kinda. Woke around fourish and then slept in my bed until fiveish. The times all blend together but these little later times are at least helping me rest more. He was so happy to go to school today and “mommy pick me up” was his banter sprinkled in between us listening to “I want chocolate milk please” in all the languages and me telling him how to ask his teacher for help taking off his seatbelt safety harness. I try to provide him with words he can use to hold a conversation with his teacher when he sees her. He wears his safety belt on the bus and then they put it in his backpack until he rides the bus home. When I went to pick him up from school his teacher said he had a great day. And our sweet baby O was ready to get to therapy. He struggles with his fine motor skills and I struggle with him struggling with his fine motor skills. It makes me sad. I wish I could find more ways to increase his muscular strength and dexterity. We are all working together to find ways to help him. Sometimes it feels like he has no interest in learning the skills so he won’t try the activities and other times it feels like his brain is not telling him how to move his hands or other body parts. It took him years to learn how to point and count with his fingers so I will never give up hope that he will be able to do more. On the way home from therapy he started talking about what I was going to wear tomorrow. I’m at my blue pants capacity. I’m thankful at this point he isn’t crying anymore about it. I told him I was wearing camo pants and he said, “orange shirt”. It felt like a victory. When I was putting away his laundry I pulled out a pair of black jeans. He called them blue pants. But he often refers to things incorrectly only to then say them with the right name. I told him he could wear them tomorrow. He agreed to that too, once again calling them “blue pants”. He knows all of his colors though so I’m not sure why he is calling them blue. I forgot his blanket that is supposed to be on the couch was in the dryer. He let me know as soon as we got home it wasn’t there. I got it out of the dryer and he was happy. He didn’t touch it or use it but it was where it was supposed to be. It is one of those things he needs when he needs it and he needs it to be where he needs it to be. “Put D” I heard from the living room and then him saying “this this old man put D”. I said, “this with a T” overexaggerating the T sound. He still says “dis” but is learning how to spell it correctly once he sees it or hears me say it. He said, “T H I S” spelling each letter, and off he ran to watch the video. He is amazing and moving those mountains to learn his skills. I’m praying for tonight to be a great sleeping night. Today is the first day of the rest of your life. Be brave, be strong, and know that you can move mountains if you set your mind to it. Smiles to all and donut daze!
I am counting last night as Owen sleeping all night. He woke after four, got into bed with me, and then slept until almost six. He was very calm this morning and happy. His routine is slowly coming around to exactly what he likes. It’s hard enough on someone when their routine is interrupted but when routine means everything to him and there is no way for me to explain why he can’t see his teacher or do the things he wants it makes it even harder for him. Plus, when his routine is gone it makes it difficult to convince him to do other activities because he is not sure when they will go away too. I’m thankful for the month of June so he can have some of his routine back and see his teacher but then it will almost be two months before he goes back to school. It is hard on my emotions too. Anytime I ask him to go someplace he says no. Trying to make him go when he says no is hard because it can quickly lead to meltdowns. So for today, I’m thankful he’s in summer school and he is happy. He reminded me again when he woke up that I needed to put his school iPad in his backpack. I love that he is thinking that through and telling me. When he came home from school he was once again so happy. Throughout the night he gave me numerous hugs. He would walk up to me and say, “wanna hug” and reach up to hug me. It made my day. It felt like time was standing still in those moments. Sometimes those hugs were not exactly at the moment I had free but for those hugs, I stopped and I was patient. It felt more like him. He has felt anxious for months so today felt calmer and he was able to concentrate. I hope it continues. He was extremely hungry today. He ate from the minute he came home until the minute he went to bed. And when his head hit the pillow he asked for chicken. I told him he could have it in the morning. It will be interesting to see if he asks for it before he goes to school. He goes to therapy tomorrow so I will be picking him up from school and then off to therapy we go. I’m praying it’s a good day for him. His vocabulary seems to be skyrocketing. He came to me asking me to look up terms on YouTube with the voice activation. I told him he could ask it. There are lots of times he does ask YouTube but sometimes he still comes to me and I have to remind him that he is brilliant and amazing. There are many words he still struggles to say or read but I am beyond proud of how far he has come. He is starting to learn how to sound things out. I remind myself that the doctors told me he might not talk and I told him that he would talk. I reminded him every day that he was amazing and he could do anything if he set his mind to it. I always told him to move stuff around in his brain until he found a slot for the words to come out. Not only does my boy talk but he talks in numerous languages. Never give up on the miracle yet to happen. Keep believing in that moment. Owen fell asleep quickly in my arms and it was wonderful to see him resting peacefully. I hope tomorrow is another great day for him at school and therapy. I’m praying for that full night of sleep as well. Dream big and know that you can accomplish anything if you set your mind to it. Smiles to all and donut daze!
I’m praying the sleep trend continues. I would absolutely love it if Owen slept all night long but waking up, coming to my bed, and then going back to sleep is steps in the right direction. He woke around one again and then fell immediately back to sleep. It was almost six again when he woke. This is so much better than the screaming all night long. As soon as he woke up it was like the rinse repeat of yesterday. He asked for his teacher, he wanted me to sit and do things for him. As soon as I was getting up he said, “iPad to school backpack”. He reminded me to make sure I put his tablet in his backpack. It was great knowing he knew it needed to go to school with him. It was a little quicker to get him ready and out to wait for the bus. I had my pink shoes on and the required blue pants. This keeps him calm. Trying to change this behavior and his need for me to be in the right clothes at the right times is something I’ve worked on with him for years, taking the advice of many specialists and advisors. Owen is certainly getting the hang of conversation. If I didn’t know better I would say he might be even a little sassy. I asked him to come to talk to me about his day and he said, “I said no”. He learns phrases from videos he watches or people that he hears. It can be someone he’s only heard once or randomly. I never know where it came from for sure unless I heard the phrase directly and I think I may have said this to him a time or two when he’s thrown his food across the room and on other such occasions. I got the bedtime process started and it always takes about an hour. I would love to start moving it a little later timeframe but he wants to start it always at about seven o’clock and I can tell because he asks for his “blanket”. I’ve tried several times to move it a few minutes one way or the other but it is hard to change his routine. When I try to do something he doesn’t like he says, “maybe next time”. He had a great day when he came home. He was very interactive and happy. The internet going in and out didn’t help us but he pushed through those moments and did great. I’m hoping tonight is the night for us to sleep all the way through. I’m glad he is getting to go to summer school I just wish it lasted longer than this month. Praying for another great day for him tomorrow. Sometimes there are rays of sunshine that come into your life when you need them most. Be thankful and be brave. Know that you are important and miracles happen every day. Smiles to all and donut daze!
I was so exhausted I barely heard Owen coming to me before he got into my bed. It was a little after one o’clock in the morning. I tried to make very little conversation and I don’t even think it was really coherent whatever I said. He was in the same boat, thankfully. I think he said, “blue bed” and the next thing I know it was after five o’clock in the morning. I lay in bed as long as I could and then finally got up. He slept through me getting up and going to the bathroom. And the important part was I got my coffee. I came back to the bedroom and sat back down drinking my coffee. I finished the whole cup before he woke. I’ll take it. His first words out of his mouth were his teacher’s name. He knew exactly where he was going and he was thrilled. We still had an hour before we needed to start getting ready but it gave him time to get himself going. He was concerned about what I was going to wear for the day and he wanted me to wear exactly what I wore the day before. Sometimes I feel like if I try to push the boundaries it will make all the eggs fall out of the basket. My goal is to keep him calm. Every day I talk to him about choices and how we get to make decisions based on our likes and dislikes. I explain to him that things he likes are different than the things I might like. I try to use examples he can reference so at some point this might help him understand that the entire world cannot wear blue pants. I know he wants order in the chaos around him and seeing the same colors help him justify everything around him. We stood waiting for the bus and he was really pretty calm until the lady at the business unlocked the door. This is the same place he saw them vacuuming before. He could not wait to get in that door and talk to them about the vacuum. I told him he couldn’t go inside because we would miss his bus. Thankfully he came back to stand next to me and shortly his bus came around the corner. When he came home from school his teacher had put a note in his backpack that he had a good day. For this I was thankful. The night went quickly. He stayed pretty calm but was a little upset with me when I couldn’t find the video he wanted by using the voice-activated option. I can’t always remember the words of the videos he wants me to find. I try to explain that he is watching the video and can find videos similar by looking at the person that posted it but he wants to ask by the name of the video. He ate numerous snacks and what seemed like numerous dinners but it was spread out through the night. He fell asleep quickly again and I’m hoping he sleeps through the night knowing he will see his teacher tomorrow. Laughter, love, and light filled our night. I’m thankful for his smile and the joy he brings me. When in doubt pray it out. Know that tomorrow is a brand new day. Smiles to all and donut daze!
I couldn’t fall asleep last night after I had fallen asleep in Owen’s bed. It was well after midnight and I was still tossing and turning. I knew he would be up early but thankfully he slept until after four. I don’t know when that became a good thing but I keep telling myself that after four is much better than three. The birds were doing their bird thing and even if I could have snoozed a little Owen had plenty of activities he wanted me to be involved in and not involved in. The commands and demands were made. I have to slice my way through all the intricacies of what will cause meltdowns and what will be fine if I squash the demands in the bud. It’s exhausting. Knowing one move could cause hours of him crying, screaming, or any other behavior is hard. I am constantly trying to stay one step ahead of his emotions and mine at the same time. It’s like playing chess with the rules of Battleship and Bingo intertwined, blowing bubbles, and eating pizza, plus walking on a tightrope, and singing Old MacDonald all at the same time. He was ready to go to church though. I always need to start getting ready early because everything takes us approximately 2 days, 4 hours, 53 minutes, and 28 seconds to get ready. I keep talking to God telling him to still my heart and make me strong. Do you ever pray harder when your day is harder? I roar to God. I roar. My tears trample my soul sometimes and I have to ask God to help me through all my doubts and worry. I want to do everything I can to help Owen grow, to help me grow, and sometimes that is just hard. He was playing with the vacuum all day but he wanted to plug it in. I told him that he couldn’t plug it in until he learned how to plug his tablet in. He has broken so many of the plugs I don’t want him to break the vacuum plug so then he was helping me plug in his tablets without screaming about it. He was then screaming about the vacuum because it wasn’t doing the same thing as one of the videos he was watching. I told him to finish his lunch instead of yelling. And then I got watermelon so he started yelling “no no no” so he didn’t have any watermelon and I was going to give him any but he doesn’t always tolerate the food I’m eating and the smells will bother him even from the other room. He was hungry tonight. I made him about 12 or so chicken fingers and cheese. He devoured them and as soon as he was done he requested more chicken. I said how many more he said, “six or eight”. He was very interactive with me and wanted me to sit and watch him watching tv. Once I started asking questions he wanted to send me back to “sit in the white bed”. He is so excited because tomorrow he goes to summer school. He can’t wait to see his teacher. I’m so thankful he gets to go. He fell asleep quickly and I hope tonight’s the night we get back to sleeping later. I’m thankful for his words and interactions. I can’t wait for his big day tomorrow. Look for the miracles around you and let your heart’s song soar. Smiles to all and donut daze!
This past week has probably been one of the hardest weeks for me since my brother has been gone. Everything reminded me of him, everything made me see him in something that was happening around me, and everything made me miss him more. Grief has no lines it can’t blur or cross. I tried to stay ahead of the emotions but it was also a hard week for Owen. It was a great week for him too, though. He accomplished so much but everything was one step from being difficult for him. I was thankful this morning when somewhere between four and five he walked up to me and said, “blue bed”. I was thankful because it was closer to a full night’s sleep. I said, “good morning Owen how about you say good morning to me”. He said, “no” and walked off. I thought about which one of us woke up on the wrong side of the bed. I got up and he immediately changed his story. He wanted me back in the “white bed”. I can’t get him to understand he helps trigger the bladder response when he wakes me up. I told him that I had to go to the bathroom and then he had to go. From there it would be coffee time and I would get his breakfast if he wanted. The morning went quick. He was happy but he was ready to go see grandma. And I needed to wear my pink shoes. I’m not sure how this has become a new obsession but it’s the new obsession. I’m still waiting on the call back from the new sleep and behavioral specialists. They said it would be at least six weeks before they even called back to make the appointment and then it could be six months or more to actually go for our appointment to see each specialist. After he ate first and second breakfast it was time to go to see grandma. Once the pink shoe and blue pants situation was handled it was smooth sailing to grandma’s house. He stayed there for many hours and then I went to pick him up. I stayed and talked with my mom for hours and he handled it all well. When we got home we ate dinner. He was very reserved and calm. He played some with his toys today but not as much as yesterday. He sang with me and he doesn’t always want time to sing. He played on his tablet and I love hearing how strong his voice is now when he uses the voice-activated option. I’m thankful for his words. I waited a long time to have conversations and interactions with him and now he is making choices on his own and starting the conversation with me, telling me what he wants, and needs, and when he doesn’t want something too. And sometimes even in another language. I remind myself tomorrow is a brand new day. He is my miracle and through it all, he continues to make huge strides every single day. I’m thankful and I know that tomorrow's new adventures will be there for us. He fell asleep quickly and I did too. I laid there in his bed for quite some time before I woke to come to the “white bed”. Find your joy, know that you matter, and tomorrow the journey continues in a new dawn. Smiles to all and donut daze!
I am certainly grateful for almost five in the morning compared to four in the morning and certainly three. I however woke up numerous times listening for Owen throughout the night. Any night he sleeps later than three keeps me on my toes, waking to make sure I didn’t miss him. When he came to my room his song was the same. Blue bed, tablet, sit, but this time he wanted the lights on. I had to ask him again. “Lights on”, I asked as he ran off, turning the lights on as he went. He wasn’t interested in breakfast yet either. I went to get his glasses and he said, “yellow glasses”. He’s been wearing his orange glasses in between the times he wears his regular ones but last night he asked to wear the yellow and pink ones. We have an appointment towards the end of the month to have his yearly eye exam and talk to the doctor about the choices for tinted lenses. I talked to the assistant already about the colored glasses and options for getting his prescription in them. I want him to be able to have the colored lenses but I also want him to have his clear lenses as well. Once we get his eye exam we will make that choice. He didn’t eat as much today but he still packed in the food and variety. He came running to me asking for “grey rocket ship turn off the light”. It took me a minute to process what he was saying. He went on. “Come here”, he said and he doesn’t always want me to follow him so this all felt different. “Swush swush grey rocket ship”, he continued. I realized he wanted to play with his light projector that we haven’t used in a year or more. I went to his toy box and as I was pulling it out he got his Elmo and his rooster flashlight out. He said, “take it with you” and ran to put them in the living room. He came back to me to get the projector and we went to the living room. He was excited. I turned it on and shined it on the wall, flying the rocket ship image up and down the walls across the connected rooms. We would always make the “swush swush” sound as I moved around the room. I stopped it in the corner and he started the countdown for it to take off again. “Three two one blast off”, he said and I flew the image around the room again. I started asking him questions about the rocket ship. I told him we were going to write a story. We spent over thirty minutes flying the rocket ship around the living room. I asked him where the rocket ship was going to fly. He said, “Mars Saturn Uranus”. I asked him what the weather was like when they took off. He said it was “raining”. I asked him what the weather was like when they landed and he said “raining again”. I asked him how many people were on the rocket ship. He said, ”two”. I asked what their names were and he didn’t miss a beat. He said, “ann stronaut” and “rocky rocket”. I asked him what they would eat on the rocket ship and he said, “bagels and broccoli” and of course “chocolate milk” to drink. I asked him if they were going to take anything like books or music on the rocket ship and he said an “octopus and pig”. We started making up a song and singing “it’s gonna fly across the sky” but then he wanted to go eat his dinner so I told him we would fly more another day. He sat listening to Mickey Mouse Clubhouse in French and Polish while eating his dinner. The rest of the night went by quickly and he wanted to wear his Spider-Man pajamas to bed. He’s ready for his grandma kinda Saturday and I’m hoping he sleeps through the night. I’m praying hard. Nothing makes me happier than seeing my sweet baby O happy. Find what makes you smile and go after your dreams. Smiles to all and donut daze!
All the days are blending together. I really need to adjust my sleep schedule since I can’t adjust Owen’s. He was wide awake by four in the morning, requesting milk, and “no lights on” like I didn’t know this was going to be the request. “Back to the blue bed” came next quickly followed by “sit in the white bed”. I try to push through the demands and commands to do what I need to do but I also walk on pins and needles trying to not rock any boat or cause a meltdown before I can even fully wake up. I got up and went to the bathroom anyways. I needed the coffee drip to drip a lot faster than it was. He asked for milk, cereal, waffles, and chicken. I told him wasn’t he glad I wasn’t still sitting in the bed. He pulled up Alice in Wonderland in Portuguese while I was getting his food sans chicken. I figured it could wait until second breakfast or first lunch before we got started on it. He has gone through so much food these past two weeks. Before if he finished everything on his plate for every meal I would be shocked. Now he eats all of whatever I give him and asks for more. I was asking him to touch his toes and he lifted his foot so I showed him how to bend in half. We’ve worked on it before but it is always how he does it and I have to remind him to touch his toes by bending his body instead of lifting his foot. So I asked him to put his hands in the air. He started singing a song he must have learned at school about moving and how to stretch or dance because the song and movements all worked together. I had an open bag of veggie straws so I gave them to him for lunch and he immediately said, “chips”. I said when these were gone he could have the veggie chips. He pulled up the voice option on YouTube and said, “ooh ahh and you” wanting the show’s channel. He then went to their video asking for chips and he played it for me. I had to laugh. I told him again he could have some soon as the others were gone. That boy doesn’t forget a single thing. You walk on eggshells because you know one false move will cost you hours of your moments forward. I sit because the meltdowns just roll over you like the thunder outside. You don’t even realize how patiently you are waiting for the meltdown to occur over a light, a pair of pants, touching your hair, or even stating that the volume of something needs to be turned down. The goal is to keep the meltdowns at bay. We had a good day, a little rough around the edges, but a good day. We laughed a lot this evening and I always love seeing the mischief in his eyes and happiness wash across his face when he figures something out. Tomorrow is a brand new day. Let go of the hurt, sadness, confusion of yesteryear and plan for your bright future ahead. Smiles to all and donut daze!
We slept better. He woke around one, got into bed with me, proclaiming “blue bed” but then fell asleep quickly and we slept until well after five. It made have even been later in the darn bladder patrol hadn’t announced itself loud and clear so off to the bathroom I went. He was extremely calm and interactive though from the minute we woke up. He was still giving me directions and anxious about when we were leaving for the park but at least he was not screaming about it. I was doing sign language with him. I spell the words with my fingers and have him tell me the letters. Usually, he’s done before I get one letter out. He spelled three words with me and then said the words he spelled before he ran off to play. We left to go to the park with our friends. The only thing was the park we were going to was closed because they were setting up for a festival. Owen was so upset. He was crying in the car. Thankfully I remembered there was another small park near us and we were able to go. I don’t like to take him to open places because he tends to run and depending on what play equipment they have since he likes to go as high as he can on everything and I want him to be safe. He was very anxious about wanting to leave the park but every time I asked if he was ready to go he said no. He loved swinging but other than that he kinda sat. When we came home he had fish for lunch and he was sitting at the table saying “yum”. When I was fixing cheese and fruit for myself I offered Owen some. He didn’t want the fruit but he did have it in the cheese. It was cranberry white cheddar cheese. He cleaned his plate of it and as I was bringing him more he said, “one more time”. He then took a bite and said, “that’s good eats”. I’m not sure where that came from but it made me laugh. I had walked to my room to put something away and he starts yelling from the other room “black pants blllack paantz black panttaza”. I am not quite sure why he was yelling it but he started watching a video with someone that was in black pants. Felt like there was a breakthrough happening of some kind. I showed him two different bags of chips. He tapped the one bag like he was tapping into a wrestling match and he said, “these chips”. Today was all about the food it seems. I gave him eight chicken fingers for dinner and he devoured them. I had cooked six more but didn’t put them on his plate in case he didn’t eat them all since he had been eating all day. I said, “do you want more chicken?” He told me yes. I said, one, two, three, four, five, or six”. When I got to four he said, “four” but I kept counting and he then said, “six all six”. And he ate them all. We laughed a lot more today than most days. He was able to take his mind of off some things on his own throughout the day. He also let me wear a hat to the park without him trying to take it off. It was our compromise. Since I wore blue pants and pink shoes instead of my camo pants that I wanted to wear I told him I was going to wear my pink hat. After the last few days, today felt a little lighter and brighter. I’m hoping that he sleeps as well as he did last night and wakes up happy again. Nothing is better than hearing his belly gut laugh. Find your smile, share your laugh, and believe in the miracles yet to happen. 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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