The need for chocolate milk and waffles came in around four in the morning. I suppose that’s pretty much all night for us. I started bedtime a little later last night but maybe not quite late enough to have Owen sleep all night. It’s hard to adjust his bedtime though. Technically he doesn’t look at the clock to know what time it is but he starts counting down to bedtime and it generally starts early in the evening. By six o’clock he is saying “blanket” and by seven it’s in full swing repeating it constantly. He can be nowhere near the couch but he will start talking about me putting a blanket on him. What he wants is the blanket to be completely put over his head. That’s how he falls asleep most nights in his bed but he wants to sit on the couch and have the blanket on him so that he doesn’t have to go to bed. Even though he woke early and was very hungry he was extremely calm. He couldn’t wait to go see grandma. He had ideas on what he wanted me to wear and what grandma was going to wear but thankfully he was going with the flow at this point. I talked to him about us wearing new colors. I ordered new pants for him in different colors so that he could make choices. Preparing for the week ahead I will have outfits set up for him so that we can work together to pick our outfits, maybe even try to coordinate them or wear the opposite colors. I want him to see that he can make other choices and that it will be fine. He used to wear other clothes but at some point, this changed. And he has gone back and forth over the years as to what I should wear. He did really well at grandma’s house and when we were heading home he wanted to find crosses on churches. I love that he understands the significance of a cross. We saw several on the way home. He pointed out the first one but then I helped him find them the rest of the way home. He ate a huge dinner that seemed to continue all night long. He was watching a video and he ran to me asking for a letter puzzle. I was pretty sure I got rid of all his letter puzzles but I wanted to make sure. I looked all over and found some other alphabet games but no puzzles. I asked him to show me the video again and he kept repeating “alphabet puzzle”. I told him I would be happy to get him one but I needed to see what kind. He said, “wooden kind”. I was so excited. He doesn’t ask me for many toys or learning games so when he does I want to make sure I try to find them. I got on my app and showed him some online and was able to “order letter puzzle tomorrow tomorrow” for delivery. I love when he shares his wants. I hope when he gets it he is as excited as I was when he asked for it. He fell asleep with his fake snoring in full swing, wanting his sheet over his head, and told me he was going to church in the morning. I’m thankful for how much church means to my sweet baby O. His voice is getting stronger every day. Tomorrow is a brand new day. Let the light of the day be your guide for the brightness that shines within you. Smiles to all and donut daze!
The sleep trend continues, he sleeps, and I kind of sleep. Owen woke around midnight and came to me. Once he gets in my bed he sleeps great. Me, not so much. The first word out of his mouth was “tablet” quickly followed by telling me to “sit” when we woke for the day. I said, “good morning to you too”. He then said, “good morning mommy sit”. I suppose that’s progress. He woke with stories to tell me. He started by saying he wasn’t going to school. I told him if he didn’t go to school that meant he wouldn’t see his teacher. He immediately retracted that statement and moved on to the next thing he wasn’t going to do. “No potty today”, he said. I told him if he didn’t go potty he couldn’t have his tablet and off he ran to the bathroom. When he got out of the bathroom he told me he wanted milk followed quickly by waffles. I told him I wouldn’t have time to make him waffles. He settled on cereal. He started telling me about the video he was watching that was in Portuguese or so he said. I love how much he talks to me now. But there are still times I ask him questions and he completely ignores my questions or instructions when I tell him to do something. I have to breathe. Sometimes he can’t process what I’m saying or what I’m asking him to do. Other times he’s being a kid and no matter what I say he is not going to get ready to go take a bath or sit up when he is eating dinner. It’s a process for both of us. I remind him that we are a team and we work together to get through this thing called life. When we got to the bus stop he couldn’t wait to get on the bus. I always have to hold his hand to make sure he doesn’t rush to the bus before it stops. When he came home from school he was still in a very good mood. The minute he got off the bus he went through the steps of what he would be doing for the next few days. He got off the bus, walked to me, checked out what I was wearing, and said, “Monday” in the form of a question. I knew how he needed me to respond but instead, I asked him what he was going to do on Monday, hoping this didn’t cause him to scream. He wanted me to say he would see his teacher but I wanted him to tell me. I needed him to work through the process. I try to have him understand that he knows his routine and he should tell me what he is doing. He needs confirmation from me but I’m hoping to build his confidence when his routine is kept. He was listening to a video while eating his third or fourth snack and he started talking about money, repeating some of the words he heard in the video. I asked him if he knew what came after the penny. He said, “penny nickel quarter” pausing like he realized what he said and continued with “dime quarter”. I am thankful for his progress. It is truly amazing. The evening went really fast. He fell asleep talking about going to see grandma tomorrow and I’m excited his routine should be exactly as he wants it this weekend. I’m thankful for the song in my heart because of the smile he gives me. Believe in yourself and the rest will follow. Smiles to all and donut daze!
I’m thankful Owen is sleeping better. He still isn’t sleeping all night but at least he is falling back asleep when he comes to me. He woke up in a good mood but still had very distinctive ideas about what he wanted to wear, what he wanted me to wear, and what he wanted everyone else that he was going to see today to wear. It’s exhausting. His teacher and aides are working on it with us, his therapist, his behavioral specialist, my advisor for him, our church, and grandma, we are all working on it. He doesn’t forget a thing though. And he is a mastermind. His communication skills are skyrocketing as well so I hoping that he will start to understand that not everyone can or will wear the same thing. Being part of the decision making process is helping him cope with what we are wearing but it doesn’t stop the forward train of him wanting everyone in blue pants. He had a great day at school. When I picked him up for therapy they said he has been doing really good with his reading and that’s exactly what I wanted to hear. I try to work on this with him to some degree every day by reading books with him or having him spell words for me. The more that I can get him to interact with me the better it is to help foster those communication skills. He had a couple of moments they said at his therapy sessions where he got upset because one of the therapists crossed her legs. So many rules govern his moments. Thankfully she was able to distract him and move him forward. He chose pizza for dinner but it was pretty much one big meal from the minute we got home. It seems like he has been sitting at the table a lot the last week eating and eating. He sang for me throughout the evening and wanted me to sing with him numerous times. This isn’t always the case. My voice is an acquired taste some nights. Bedtime was a big discussion of what he was going to wear. He wants blue night pants always but I try to get him to understand he can’t always have blue pants. He had three pants to choose from and none of them were blue or had any blue in them. He went back and forth, finally choosing a grey camo pair but as soon as he got into bed he took them off because they weren’t blue pants. I was not even going to start a battle I would not have won. He at least had them on for a few minutes. I’m starting a new strategy with him and we will see how it goes. Today I breathe. I gather strength from the steps of yesteryear. Owen has come so far and he will continue to grow. Letting him find his voice in an always questioning world can be difficult for him but he is doing amazing, stepping up to the challenges that have been in front of him, and checking them off one by one. Never give up on the hope of tomorrow. Smiles to all and donut daze!
The trend continued. Owen came to my room sometime in the middle of the night and got into bed with me. Thankfully he went right back to sleep again. I keep hoping that he will start sleeping through the night again but at least he has been falling back asleep when he comes to my bed. He woke up very slowly, not wanting me to get out of bed, and he didn’t want to get out of bed. I told him that I had to go to the bathroom and if he didn’t want to get up then he wouldn’t be able to go to school. He followed my lead. He wanted me to sit and that topped my list of things I wanted to do too, right after coffee. We didn’t have much time before we had to get ready for the bus. He put on his shirt and pants for me with little help except I had to button and zip his pants. He then put his socks on but he still doesn’t completely understand that the grey part goes on the bottom of his foot. I helped him adjust it and then he put his shoes on. He does really well with putting the shoe itself on but he has a hard time keeping the tongue up as he is doing it. Once I helped him fix that we worked on pulling the Velcro shut. It completely depends on the day as to how that goes. We have been through so many shoe styles with him over the years and the victories are kept close to my heart. I pray every day that Velcro continues to work for him. Slip-on shoes easily upset him, sandals he likes until he is actually the one that is wearing them, and tie shoes are a constantly revolving door that may or may not work depending on if the tie stays exactly in the right place and it is made even harder because he constantly tugs on them. All of this is in combination of where his pant leg falls across his shoe completely changes how he feels about his shoes and if he will wear them. The day he asked me for bunny slippers will always have a special place in my heart. And the fact that he wore them makes it even better. I never imagined the complexity that making a shoe choice could be. When he came home from school he was in a great mood. He ate, and ate, and ate some more. I made him a grilled cheese sandwich when he got home. He ate it all, some sliced cheese, and veggie straws. And then requested pizza. I didn’t have any pizza left. I told him and he said, “pizza tomorrow”. He then asked me for “shrimp please” and I was sad to say I was out of shrimp too. He said, “shrimp tomorrow”. To say the least, I now have a grocery delivery coming for tomorrow. We will see how much he eats tomorrow because he didn’t stop eating all night. The bedtime process is always a hit or a miss but I’m praying tonight the sleep part is the best part. Tomorrow is therapy day so sometimes Wednesday nights don’t go according to plan and we’ll see if “chicken nuggets drive-thru” calls his name or if pizza and shrimp will be the winners. He was very calm all night, listening to me, and interacting with me. I’m thankful for how far his communication skills are coming. His big hugs make my heart happy. Keep moving forward, smile along the way, and make yourself happy. Smiles to all and donut daze!
“Pizza”, that’s how the conversation started. Owen woke at some point and got into bed with me. I think I forgot how to read time because I’m really not even sure what time it was. Thankfully, he fell back asleep and my exhaustion won. When he woke he was ready for milk, cereal, and me to get coffee so I could “sit in the white bed”. We had about thirty minutes before we had to leave for the bus stop. He was very calm. It was raining when we needed to leave so I told him we would go in the car. It wasn’t raining very hard but he rarely will stand under the umbrella with me so I didn’t want him to get too wet before he had to get on the bus. He asked me to wear my brown boots but I didn’t want to wear them because it was raining so I wore my grey shoes. I told him that I would wear them when he came home if it wasn’t raining. This is where I swallow the lump in my throat and wipe the tears from my eyes. When he got off the bus he did the once over for everything I was wearing. I got the approval. I wore all the right clothes to meet his bus and the brown boots. He gave me a big hug when we came inside and he said he was “no angry today”. I know it is so incredibly hard for him to process what I’m wearing or what others are wearing and how it makes him feel. I just have to breathe and remind myself that I’m doing everything I can to help him work through this. It’s so hard knowing that my clothing choices and what the world wears cause him to be upset. I have to remind myself how far he has come though. The angle of a door used to cause meltdowns and we’ve worked through that so I know we will get through this too. On Sunday I asked him if he wanted pizza and he said, “no pizza today”. I asked him yesterday and he ignored me. This morning he asked for pizza and I said we could have it for dinner tonight. He sat eating it from head to toe, saying, “I like pizza no staring” but he wasn’t looking at me. He was eating the pizza but was not thrilled I was eating the pizza too. He wanted it all to himself. I think I might need to get it more often. He was watching baby red bird from the Mickey Mouse Clubhouse in Portuguese and telling me the story in English. He told me the color of their feet and how they talked to each other. “Tweet tweet tweet,” he said. My sweet baby O fell asleep in my arms and I’m thankful for his words today. His communication skills are skyrocketing and I can’t wait to watch him grow tomorrow. Sometimes the gratitude is simply because of someone’s attitude. Words do matter and your smile can change the world. Smiles to all and donut daze!
Owen crawled into bed with me sometime around midnight. I was praying and praying and praying that he would easily go back to sleep. And he did. It didn’t take me long to follow suit. Exhaustion has been part of the daily routine for me lately. Grief doesn’t help this. You are be bopping along and then it hits you like a ton of bricks. Everything reminds me of what I’ve lost and the hole in my soul is bigger than the one in my heart. My random crying upsets Owen so I breathe. He had a great morning and listened to most of my instructions as we got ready to walk to the bus stop. The only part of our morning that slowed us down was my shoe choice. He wanted me to wear my pink shoes and then my black shoes and then my brown boots. He did not want me to wear my grey shoes but those are the ones I like to wear. I told him I would wear my pink shoes tomorrow and he said, “black shoes.” Clearly, it will change again. I am working on different ways for him to understand that we don’t all wear blue pants or the correct shoes all the time. He’s ten and some days it’s still a process for me to understand that me wearing the wrong pants, turning the wrong way, touching my hair, eating a certain food, and saying the wrong words can all cause him to have meltdowns. The list goes on and on, too. And as soon as I think I understand a rule it changes or for a day or ten weeks or three years it’s fine until there it is again and me opening a drawer and leaving it open for a minute causes him to run from the other room to close it. When he was younger as soon as I could see a meltdown coming I would start rapid-firing questions at him, knowing he couldn’t answer any of them but I needed him to focus on something else. I would always start with the same question “where’s purple”. It really doesn’t even make sense but it helped to get him to move through his mind to focus on my words. Later I would sing him a made-up song and move his hands in a motion. This was all to recenter him. Now, years later I can tell when he realizes he is about to have a meltdown and will start singing “I’m a roly poly roly poly roly poly and I’m bigger than this.” When he came home from school he gave me the once over for what I was wearing and then he gave me a big hug. He talked to Siri and Alexa, having conversations with them in multiple languages. We read together, laughed ourselves silly, and he looked up numerous combinations of phrases on YouTube looking for very specific videos. “Bicycle pig mud”, he said, laughing as the video pulled up. Next came “Mozart rollercoaster” with the request of “I want more milk please” in Arabic to me. Sleep came pretty quickly after he woke numerous times right in a row. His smile warms my heart and I am thankful for how amazing he is doing. Never give up on the hope for tomorrow. Today is the stepping stone for all the amazing things to come. Smiles to all and donut daze!
Sleep was slept. Not as much as I would have liked but at least Owen slept until after four this morning. If only I could have convinced him that five was a much better time but hey, we slept. He was in a good mood and ready to go to “church church church” before it was even time to go. The requests for cereal, waffles, and chicken were repeated throughout the morning and started again as soon as we came home from church. Getting to church was a little more complex and complicated than it should have been but when your megaphone is involved it means you have a lot to say about the situation. I attempted to help Owen put his pants on numerous times. I try to let him do them himself, working on his independence but sometimes that leads to him screaming, taking them off, and playing with his megaphone. I really do love seeing him play with his megaphone though. He tells little stories, sometimes only a couple of words but they’re his stories and he uses the different character voices the megaphone changes to. The ride to church was a different story. He was doing great until we were more than halfway there. I stopped at a yellow light. I probably could have made it, should have made it but I always try to stop. This is however more nerve-racking for Owen. He wants no lights ever to stop our forward momentum. He started screaming about needing the arrow. That’s what he says thinking we need an arrow when we turn but we were going straight. He wants me to say that we don’t need the arrow and then he goes through a few more phrases and he moves on. Or he did what he did in the car today and had a huge meltdown because I didn’t say “we don’t need the arrow.” I waited too long to say it. He was fine by the time we got to church and did great at church but I was frazzled. The best part is he is so loved there and he knows, he can feel it. The afternoon was a rollercoaster ride of getting his foot stuck in the spokes of his scooter, twice, because he wouldn’t stop putting it in them. He thought it was funny. Luckily I only had to turn his foot and it came out but then he stuck it right back in. Two times was enough and then it was gone. He sat watching Mickey Mouse Clubhouse episodes in all the languages, telling me what they were saying. I’m still amazed how much he has taught himself. He was so tired he fell asleep quickly, not wanting to even take a bath. I guess he had a full belly because once again he ate all day long and I lost track of everything he devoured. It was an emotional day for me, still feeling the waves of grief that are not even easily defined. I’m thankful for my sweet baby O and how far he has come. Life is amazing. The journey is not always easy to explain but the love sure is. Find your strength, be inspired, and share your story. Smiles to all and donut daze!
I’m investing in toothpicks stat. My eyes had a hard time keeping open all day. My sweet baby O decided party time was going to be two o’clock in the morning and he was fully invested in it. Owen came to me explaining that I was in the white bed and he was taking his tablet to the blue bed. I told him no tablet and that it was still nighttime. One ear and out the other really doesn’t do this moment any clarification. He ran off, grabbed his tablet, and went to happily screaming before I could even sit up in bed. He was so happy. The tablet was on full volume, the tv was on so loud I think the neighbors in the next state could hear it, and the delighted screams came because Mickey and the gang were doing their dance that echoed through my head like a gong being rung by Willie the Giant himself. Why, oh why do manufacturers not make easy parental volume controls for their products. By nine o’clock in the morning, he had three breakfasts and a snack. And then we were meeting friends for breakfast but I hadn’t told him the night before, hoping he might sleep later than the glorious two o’clock in the morning he seems to wake up at on Friday nights. When I told him we were meeting our friends he said, “that’s not the caboose that’s the whole train” and off he ran. Seems like a good phrase to me and I might have to use it. He did great at breakfast. He ate all of his requested pancakes and on the way home, he asked for chicken nuggets. I told him we would have some when we got home. I couldn’t imagine he was still hungry but as soon as we walked in the door more food was requested and that pretty much was all he wanted to do was eat. He was in a good mood until night fell. When it was time to put on his pajamas I made the mistake of calling his pants “black” instead of “blue pants”. A meltdown ensued and after about thirty minutes he took them off and fell asleep in mid-scream. He was also concerned about what everyone is wearing to church tomorrow and my heart echoes the emotions he is feeling. I keep telling myself that this will be like the meltdowns he had because of bananas and we will move forward. Today he sang with Alexa and talked with her in all the languages. I’m thankful for the amazing gift of my son. Be inspired by the world around you and know that you can make a difference. Smiles to all and donut daze!
My nerves were racked. Plumbing problems are not something I ever want to have but when it has to do with the toilet I especially don’t want to think about it. Owen does not completely understand when something is broken and he certainly doesn’t understand that he can break something. He constantly throws his tablet. Generally, not in anger but more to watch what happens when he is playing a game or for the sensation, laughing the entire time. He sticks his finger up the faucet, pushing on the aerator breaking them, or turns the handle as far as it will go, screaming because he can’t make it go any further. I breathe. He slept all night. I’m scared to start the count again but two nights in a row. I’ll take it. I got him off to school wearing all the right things because I didn’t want him to have a meltdown about what I was wearing and we miss the bus. I had to find a plumber that could come today. I always over-stress, overanalyze, and overthink it all. I’m not sure if he put something down the toilet or if it just was cranky from too much toilet paper but thankfully a plumber was able to come and fix it before he came home from school. When Owen walked in the door after school it was like he sensed something had gone on. He walked through the house and was very agitated. He could tell a few things were out of place. I tried to distract him and thankfully after about twenty minutes he calmed down and moved forward. I’m sure he could feel my nerves as well. Plus, it’s Friday. He’s not getting to do all of his favorite things this weekend so I’m trying to put other choices in place. The behaviors were all over the map as the night wore on. One minute he wanted to sit on my lap reading with him and the next minute he was running through the house screaming about a noise. Bedtime didn’t really go as planned either. He was very agitated about his blankets and wanted them all on top of him even though they were on him, and then wrapping himself as a burrito. Plus, he was concerned about who would be wearing blue pants on Sunday. I’m praying that he can sleep all night once again. Thankful for his hugs and that bright big smile. Today is the first day of the rest of your life. Follow your heart and make your dreams come true. Smiles to all and donut daze!
I fell asleep very early last night. So early that I woke up by midnight numerous times thinking I was late starting our day. I kept listening for Owen and I thought I heard him around four, but I didn’t. I finally got up to go to the bathroom and he still didn’t wake up. I think the sleepies finally caught up with him. He had a big day ahead with school, going on a field trip, and then therapy. I asked his teacher how his field trip went when I picked him up for therapy and she said he did fine but he really didn’t want to watch the play, instead, he wanted to see what everyone around him was doing and wearing. As soon as he saw me, he said, “black shoes”. He bends down to look at my legs and what I’m wearing. This action had been gone for a while but resurfaced a month or so ago. He used to stop me in my tracks with his sudden movements like that. I would be walking and he would dart in front of me, stopping to look at my legs. Sometimes he would laugh, sometimes he would pull on my clothes, and other times start screaming but he couldn’t express why. I never was sure if it was because he could see the size difference in my legs from the hemihypertrophy or if he was fascinated by my pants or even upset. Maybe blue pants were a thing then too. He did great at therapy today. I love how all of his therapists are working with him separately but they truly work as a team to help with all of his needs. He has made huge strides and I’m very thankful. When he was done I got him some chicken nuggets and we came home. The dude was hungry. He ate all twelve that I got him plus French fries and then a snack afterwards before bed. We had a full evening playing music, reading several books, and working on his writing. He acted like he did not like it when I attempted to sing but secretly I feel like he loves when I sing but only on his terms. I’m hoping he sleeps all night again but I’m not putting any eggs or chickens in any baskets. He had a little bit of a hard time falling asleep but at least he was happy. I’m thankful for how far he has come. Share your joy with the world around you because a smile is sometimes exactly what someone needs to change their day. 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.