Who needs sleep and other fine questions seem to trample through my mind at three o’clock in the morning. Owen crawled into bed with me and then slept great. I watched the minutes spin on the clock. He seemed calmly anxious all day. We had a lot going on but he seemed to handle most of it relatively fine except for the “baby scissors” and with that, I finally figured out what he was trying to tell me. Our morning started with him telling me he needed his “glasses off” and ran to get them. This felt like a big victory. I’m still amazed at how well he is doing with them. And my big laughter of the day came from his big belly gut laughter at the sound of a whale. He somehow stumbled upon “Alexa play whale noises”. This lead to a volcano eruption of laughter from him. He couldn’t stop laughing about it. When we got in the car it’s the never-ending distraction techniques that keep me in circles but I’m trying to find one that keeps him happy and meltdown free. All morning he was singing in French so when we got in the car I asked him to continue. He sang for me in French, German, Arabic, Chinese I think, and then Spanish. One after another without even skipping a beat. He didn’t even hesitate or tell me no. I couldn’t completely hear the Chinese song when he was singing it but it sounded like it from the tones. I don’t completely understand all of the languages but I’ve heard him say them all so many times that I’ve started to learn some of the words. We went to the optometrist office today to get Owen’s eyeglasses adjusted. At first, he didn’t want to go but once we got there he wanted to go watch Mickey Mouse with the doctor. When we were driving to the appointment he told me to “turn right baby scissors”. I again really didn’t know what he meant. It should have dawned on me but I couldn’t place what he was trying to say. Tonight it finally came together and he was so close with his words. He keeps trying to tell me where his previous babysitters lived. He told me tonight he wasn’t going to see one of his “baby scissors” anymore that he would “be with mommy” and I relaxed what he meant. Tonight he stood in front of the turned off television, looking at his reflection, and lifting his shirt. He was talking into the screen and told me he was going to “ride to the horses in little red wagon”. I think he has the right idea. Tomorrow we are going to a horse farm. We’ve driven by it so he knows the area and that will bring him some comfort but I think he will be even happier with the security of his little red wagon and we will see how it goes. And it’s therapy day so one by one we are clicking the days off until school starts again. I’m still smiling at his belly guy laughs and I’m thankful he had a pretty calm day with only a few outbursts. Tomorrow is a brand new day. Celebrate your victories and celebrate ours. Smiles to all and donut daze!
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Some days you have to move forward even if you want to claim ostrich rules and stick your head in the ground. I suppose we kinda slept last night but I’m dreaming of great sleep tonight. We shall see. I feel like I’m stuck in this never-ending project mode that nothing ever gets accomplished. I guess that means socks still won’t be matched tomorrow, probably. I was eating cherries and Owen started singing “hi ho cherry-o”. He was gluten and dairy free for years but I relaxed that to try more foods with him. Only recently though is when I started giving him regular chocolate milk instead of almond milk. The brain-gut connection is so huge and I keep wondering if he is having more meltdowns because of the milk. I am going to start him back on the almond milk and see how he does. I told him we were going places today. I dragged my feet as long as I could and then got us dressed. His meltdowns and emotions have been so strong lately I don’t want to go anywhere but I know that we need to go everywhere. I have to keep pushing both of us to grow. I want to be completely sensitive to his emotions and needs but I also know that he is such a people person that we need to keep building his skills and get through all of these moments. I took him to a farmers market that also has restaurants. I convinced him that he wanted to go because he was going to ride in his “little red wagon”. He loves riding in his wagon and it helps me because I can push him and not worry about him staying close to me even if we do wear the armbands. Once we got there he wanted to go and stay. As many times as he told me he was ready to leave he also wanted to “turn right at the kangaroo”. I got us both “coffee” and he really liked his. They made him a cool hot chocolate. And then when I told him we were going to leave he said, “wanna stay let’s stay today turn around”. I told him we were going to go somewhere else and he said, “mommy change” which means he wants to go home and I need to be in home clothes so he knows we are not going back out. I told him I would in a little bit. I wanted to take him to see a new park. It’s sometimes easier to get him to do things if I can show him where we are going first. I didn’t know how the market would go because it had been years since he was there with me but I think it will be a place we can go again. We drove around the park and the whole time he was still telling me I needed to change but he didn’t scream and we made it all the way home with no meltdowns so I count today as a huge victory. It was all emotional because I was waiting for the other shoe to drop but he didn’t take his shoes off in the car, nor go into a meltdown mode, and we had a good day. I’m thankful. Never give up on the miracles yet to happen. Believe in yourself and the rest will follow. Smiles to all and donut daze!
I woke at five with a start. Owen was not next to me. I laid there for a minute but my bladder got the best of me. I checked on him while I was up and then went back to bed. I was shocked he was still asleep. I fell back asleep and about an hour later he came to find me. I was able to convince him to get into bed and we slept another hour, kinda. He wanted his tablet and to go to the park with his friend. He needs to keep that routine. I let him try pomegranate juice and to my surprise, he finished the little bit I put in his cup. I thought for sure he would spit it out. “Baby scissors” has become one of his go-to phrases. It’s like so many of his catchphrases and I have to figure out what it references. He uses it when we go to different places or talks about things we are doing. “No zoo today see the kangaroo turn right lion baby scissors”. There’s a message in those words from him but I’m not sure of the connection yet. It’s like when I finally figured out he thought his toes were called “birthday candle”. Today was filled with those emotional moments that make me want to cry the river of tears that don’t always fall. We went to the park and he had a lot of fun. Especially trying to scare me when he was on the slide. The trip home was once again of epic proportions. Why everything has to be something I don’t know. I spoke with his behavioral specialist today. We are trying to find ways to comfort him and prepare him for his day. Knowing his schedule will help him but he does not connect well to the calendar or other visual keys. We still had to leave to go to his therapy appointment. Emotionally I didn’t want to go. I was not prepared for more screaming but we had to go. Thankfully we got there and back without another meltdown even though he tried. My awful singing got us home again. Somehow he was having a conversation with Alexa in Chinese before bedtime or at least I think it was Chinese. When I asked Owen he told me “Chinese Portuguese Arabic Spanish”. So maybe he was having multiple conversations because when I asked Alexa she said she spoke in all of them. So basically they were keeping a secret from me and all I know is Owen understood it. I pray he sleeps through the night again. And I pray for a calm day tomorrow. I’m thankful for his smile. Today is the first day of the rest of your life so dream big and live life forward. Smiles to all and donut daze!
Can you beg a month to come quicker, I keep wondering. I need August to hurry up and get here. This no routine thing is so hard and emotional for Owen. My eyes burn from the tears I want to cry and the sleep I didn’t have. He woke by two, asked for his tablet within minutes of getting into bed with me, and didn’t let me forget we were going to “church soon”. I told him that church didn’t open at two in the morning and he couldn’t have his tablet because it’s nighttime. Wonder when I’ll learn that he can have his tablet anytime he wants because I would get more sleep. I never imagined there would be so many rules I had to follow and that cannot be broken. That's the even harder part, they can't be bent or broken until they can be bent or broken. My glasses being on my face have always been something that couldn’t change. I had to wear them. I can’t even think of all the hours upon hours of meltdowns over my appearance. From glasses to outfits, to my hair being pulled up and not even in a ponytail, literally me lifting it off my neck with my hand, to what clothes I was wearing, and food I was eating. On to the floor, he would go screaming, flipping around over me moving my hair or anything else I would do that changed my appearance. I had to be picture-perfect the way he needed to process me. Another sip of coffee to get through that. He hasn’t seen my hair completely wet in years. I’ve been trying to show him my hair being wet a little at a time but it’s still hard for him. But he now asks me about my glasses and I think maybe he understands more since he wears them. He says to me “take your glasses on” pointing to them. Then I have to show him on and off. This has been years in the making and so incredibly hard for him to understand. That’s big progress for you. I truly check off those considerably tiny milestones and know that they are actually huge victories because I know how long it has taken him to get this far. He didn’t scream on the way to church and all the way home. I’ve found that one of the ways to prevent meltdowns is to annoy him with my glorious singing. As soon as my voice has any tone that may be classified as bad singing he belts out “the wheels on the bus” and will repeat it until I stop. I have to laugh that he thinks my singing is that great. We sat a lot today and he asked me about every five minutes if he was going to the park tomorrow with his friend, if he was going to therapy, wanted to see his grandma, and when he was going to see his teacher. I breathe. When I told him it was bedtime he said, “three minutes ten more minutes one minutes ten two more minutes five minutes” and this went on. We are working on time. It’s exhausting staying ahead of his amazing mind and awake when I really want to be asleep but I’m thankful he had a calm day and something to look forward to tomorrow. Never give up on the miracle yet to come. I talk with my miracle every day. Smiles to all and donut daze!
I really want to hang the gone fishing sign out. How does your day start out so calm and then change in an instant. Owen slept until seven after coming to me around two in the morning. At least he’s sleeping a little better. Today was bowling day. The day that we are supposed to love and be excited about. And the day now I want to completely forget or at least fifteen minutes of it. I talk to him about emotions and how we need to work through them. I explain to him that everything doesn’t always go our way. But how can he possibly understand all that. He doesn’t. Sure, he might grasp some of it but when emotions brew meltdowns happen. He’d had a great day, extremely calm. He spent a few hours with my mom before bowling and he was ready to go. He wanted to go bowling. What he didn’t want is for the pins not to do exactly as he wanted. Before I could even say count to ten he was pulling my hair and I was down. He was ready to bowl again with all those emotions. I don’t want to think about it. The bowling alley was busier than it normally is, people are starting to get out again. All those eyes watching my son go through all those emotions. My heart ached for him. No one offered to help. I don’t blame them. What would they even do. I sat with him, I talked with him, I kept him right next to me. I told him to count to one hundred. He said, “no count to one hundred today”. I told him if he didn’t calm down we would have to leave. I honestly didn’t know how we could leave if his emotions were still upset but my flight response wanted to call every bird, plane, and rocket ship to get us out of there. He calmed, I kept from crying, and we bowled. He did great after that. Me, I still want to crawl under a rock. He started asking for “nuggets chicken nuggets please” before we even left. I had told him no earlier in the day but oh how I wanted calm. We went. He mostly did fine on the drive home but I could tell he was processing everything that had happened. He ate his chicken nuggets and he played with his tablet. After dinner, he kept coming to me and hugging me. His words, his emotions, his body language all trying to come together to figure out what happened today. My sweet baby O we will get through this together. He’s growing and the next step is life with hormones. One breath at a time. I attempted bedtime early. It was not what he planned. He doesn’t like it if I close my eyes when he is trying to go to sleep. Let’s just say that does not go over well. Our glorious victory came when he actually asked me for a “booger place today”. I didn’t know what he meant at first. He said, “no in de mouth yucky”. He wanted a tissue. Years melted away in that moment of growth. We grow, we learn, we love. Find your strength and keep pushing forward. Smiles to all and donut daze!
“Red shirt”, he said over and over, his foot stomping on the ground and his face still showing the signs of being very sleepy. Owen didn’t want to take his shirt off. He came to me sometime in the middle of the night and then fell back asleep until close to eight. He couldn’t shake the sleep. He also didn’t go to the bathroom right away. He got his shirt really wet and I made him take it off. He was not happy. He likes his red shirt and he wanted it on. I tried some of his other favorite shirts but he wanted the red one. For some reason, I got him two plain red shirts and this has come in handy on numerous occasions. I’m not quite sure why he wants the red one so much but maybe it’s his favorite color. I luckily had washed both his reds shirt but the one was still in the dryer. I told him I would get it and then he could wear it. This made him happy. Within the hour he was calmer and I had him play his new game. He went to visit “grandma” today when I had an appointment. We got ready and he was pretty set since he didn’t want to change his red shirt. No meltdowns all the way there. He wasn’t pleased with one of the roads I took but he recovered quickly from it. I went to my appointment and came back to get him. He listened to instructions well when I told him we had to go and got in the car. I was trying to prepare myself for the ride home. I was praying he would handle it fine. We drove and I talked to him about license plates and where the cars were from, hoping to distract him. I went the long way home, also hoping for the big distraction. And we made it. No screaming. No meltdowns. No outburst. None. I was so thrilled. There was lots of traffic, lots of red lights, and we didn’t go to see the windows, and still no meltdowns. That right there was my big smile for the day. My emotions get the best of me so many days and today was a big one. He really was calm for most of the day but it’s still the little things that make my heart cry out for calm. He asked me a hundred times about grandma’s house tomorrow. It’s routine and he needs that more than anything right now but it still makes me sad. He can’t process it all but it’s so hard steering the conversation away from the same words over and over. If I don’t answer him he gets upset, if I answer the wrong way he gets upset, and if I tell him something different he will correct me and make sure I know what he’s doing. Days like today are about my emotions. He really had a great day, remaining calm through most of it but I still am full of those rollercoaster emotions waiting for the other shoe to drop. And also beyond thankful that he had a good day. That’s the progress I’m rejoicing. Find the joy in your day and know that you can make a difference in this world. Smiles to all and donut daze!
Not much sleep but hey we’ve had a pretty calm day. And lots and lots and lots of coffee for one of us. I listened to Owen ask Alexa for different songs on his own. That will never get old. He told himself numerous times, “say it slowly”. He would then repeat his words and change his voice to say them more clearly. I love how strong his voice is becoming. I begged God for his words to come very early on. I was told numerous times by numerous doctors he might not talk and each time I talked with God. Words are not easy for my little boy but boy oh boy is he getting the hang of it. The words don’t always connect to the object or expressions he is talking about but I have learned over the years that he will reference them the same way. I was always concerned that he wouldn’t be able to tell me if his socks were bothering him or his shoe was not on correctly but as time went on he was using his own words to tell me what he needed. “Birthday candle”, he would say. I realized he was talking about his toes. Once I figured that out it was both a glorious moment and one that I took very hard. I wondered how many other words I had missed or not understood what he was saying because his word didn’t match what I was expecting. I had to let it go and not be hard on myself. I looked up to see Owen watching the tv upside down. He was standing up and had dropped his head down so he could look at it from that angle. It always fascinated me how he needs to see the world in every direction. Today was therapy day. “I go to therapy”, he reminded me numerous times. I was thankful he wanted to go after yesterday. He also reminded me, “no petting zoo today”. But when we left therapy he mentioned the petting zoo numerous times. I told him we could go and he said, “nopedy nope no petting zoo today”. We have to build up to these things. The highlight of the day though was no meltdowns, very few driving directions were given to me, and he asked to go get “chicken nuggets french fries chocolate milk ice coffee”. I like how he switched it to ice coffee for me. We worked on our breathing and I reminded him about playing his game to help regulate his emotions. Today felt like many little victories. He’s been calm, I’ve been calm, and together we will get through this. The great ending to our day had Owen singing out “toemaytoe tamatoe” like how you say the difference and who knows where he heard that but I am thankful for that little gem. Sing out into the world and rejoice in your victories. Smiles to all and donut daze!
Middle of the road is how I will describe today. Owen’s emotions have been all over the map and mine have been right there with him. He woke sometime in the middle of the night and got into bed with me. At that point, one of us slept and one of us didn’t sleep. He woke again a little after six ready for the day. I was already awake but I sure don’t think I was ready for our day. I wanted to go walk with Owen at this farmer’s market, he did not. I wanted to take him to ride elevators, he did not. I wanted to take him to look at horses, he did not. I asked him if he wanted to go bowling or to the coffee shop or even to watch the planes and he continued to tell me no. He didn’t want to go anywhere and when I said we were going he got really upset. There was no place we really had to go so we stayed home. I think he was afraid I was going to take him back to the petting zoo. He has therapy tomorrow and he has told me several times “therapy tomorrow tomorrow I go to therapy”. It’s routine, it’s his comfort, and I get that. I was listening to him ramble off French like he has been doing it all his life and it was beyond fast, and then right in the middle of his well rehearsed words, he is stopping to spell “h o r s e” in English. He ran to me, got an inch from my nose, and started spelling horse. For the rollercoaster ride of yesterday, he has been pretty calm today. We are trying a new strategy for his emotions and hopefully, the app we got will help him to learn to breathe. I’m trying to teach him that we can learn to control our emotions through breathing and relaxing. One day at a time. Each day we grow and learn. I held Owen as he fell asleep. He said, “I love you” and that’s what matters. Find your strength and keep pushing forward. Smiles to all and donut daze!
He’s nine. Owen’s nine and sometimes it’s a gut-wrenching moment when I hear him make a noise. He gagged. He does it a lot. He does it on purpose, sometimes. He likes to say “excuse me yum blatz” taking a line from the Mickey Mouse Clubhouse. How he decided to say “yum blatz” with excuse me I’m not sure but he does it all the time. Every night I have to talk to him about drinking the bathwater. It doesn’t matter how full the tub is he’ll find a way to drink the water. “Burp”, he says, making a face while he burps, and then “excuse me yum blatz”. The struggle to get him to sleep has me not even wanting to start the bedtime process. Routine is key in all this but right now there is nothing routine about routine. The good news he slept until six this morning. I got super excited when I thought the clock said eight but I realized how much I really need my glasses. He immediately started talking about the animals at the zoo and I told him we were going to see the planes at the airport too. He said, “planes up in the sky jump up to touch the clouds”. He talked about the animals and going in the car. When we got to my mom’s he said all the right things and the first few minutes in the car were fine and then he decided that he didn’t want to “go straight”. He likes to tell us what direction to go. This is where my heart crashes inside my body even though I already know the steps that will unfold before my eyes. I tell myself to accept whatever comes our way but it’s still an emotional journey. My expectations and what I want for Owen are different than the reality of what will happen and how he will react. And every single day can be different, exactly the same, or amazing. I breathe. My son does not forget a detail. The area we were in is where he went to summer school two years ago. He knew immediately where we were and that he wanted to go to school not to see the animals. “No zoo today”, he said and with that, there was no zoo today. We got to the animals and he would not get out of the car. I asked one of the attendants if he would hold one of the animals up by the window to see if maybe he would get out after that. “Tell the duck bye bye”, he said. I expected it, didn’t mean it was easier to take but at least I was prepared for this. So many of our adventures take numerous times to build him up to it. On to the airport we went. Again his memory is amazing. As soon as we drove up to it he talked about riding the elevators. We had not been to the airport in years. I had taken him there to see the planes and ride the elevators when he first started watching videos about elevator repair. But today he didn’t want to get out of the car. You don’t just randomly stop someplace to do something randomly. We drove around a couple of times and then went back to my parents’ house. When we left there he was still struggling with his emotions. He bit through a ball and then I told him to hold his weighted stuffed whale. It helped him some and we got home without a meltdown, some screaming yes, but no meltdown. Tonight he sang, “llama llama no drama” and I wondered if he was thinking about the animals he saw from the window. The day ended pretty calmly and I pray for sleep and peace for my sweet baby O. One day at a time I remind myself and celebrate the victories we had. Find your joy and let tomorrow inspire you to change the world. Smiles to all and donut daze!
I can’t even remember how many times I thought or said the word “August” today. Owen asked for his teacher more times than I could count. And I keep thinking oh please let us find some kind of routine. The yelling and meltdowns are exhausting and not to mention the exhaustion is exhausting. He has been going to bed so late and when I think he’s asleep he’s not. He wakes up screaming about the color of an object or something he ate a week ago or needing to go potty but as soon as he gets in the bathroom he screams “no potty today”. I stood in front of the refrigerator and I couldn’t even open the doors. I immediately started crying. I hung on the handles to stand upright. He came up behind me and started laughing. I didn’t want to start bedtime. I pray he sleeps like he did last night. He slept until about six this morning. For that I’m thankful. We had a pretty good day. We went to the park with our friends, we went to his therapy, and we got his chicken nuggets for lunch. But that drive home. Those last few blocks. Why, oh why, oh why is screaming the stage we have to be at right now. My heart aches for him. My words mean nothing at this point. It’s hard not to feel like you are on an island and not the kind with the tiki bar and great sunsets, more like just you and Wilson. His words and actions are becoming more animated and clear. I love it. “Say it slowly”, he said to me when I was talking to Siri, “you can do it” he went on. My words coming out of his mouth. With his lunch, I got him honey mustard sauce. He never eats it until today. I had walked into the other room and I hear, “honey mustard please more honey mustard”. He was eating it straight from the little tub with his finger. He wasn’t dipping his fries or nuggets in it. He ate all of it. I told him we were going to a little petting zoo tomorrow. He said he was “gonna see lion and kangaroo”. I told him it was a little zoo and he said, “I see little animals and a horse”. We shall see how that goes over. We have to get there first. I pray for the adventure to go smoothly. He sang to me in French and requested more phrases in Portuguese. His smile gets me through our days. Celebrate even the tiniest of steps forward because they can lead to the hugest of victories. Smiles to all and donut daze!
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AuthorI'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart. Archives
April 2024
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