I’m concentrating on the victories today. I have to. Owen slept later. I won’t say he slept late but four o’clock in the morning is better than three. I was hoping by starting the bedtime process later it would help but it wasn’t enough to change his wake-up time. Rinse, repeat. The waves of grief still hit hard and I’ve been thinking a lot about the day before my brother died. And the day before that and the day before that. Occasionally Owen says something it reminds me of a moment in time or something happens and I think about my brother. Grief expands and contracts in my day. My emotions overwhelm Owen. He’s still learning to deal with and process how emotions work. And mine seems to be working overtime right now. He was relatively calm today though. When he woke he came to me. He told me all about the blue bed and then I asked him if I was going to get a “good morning mommy” at some point. He blurted it out and off to get his tablet. It was the “take your bladder to the bathroom” point and this is when he informed me to go back to bed. I was like dude I would love to be sleeping but someone had other plans for me. His next set of instructions came about the lights. I told him that if he wanted milk I would need to be up and the lights on. I proceeded. After I got his breakfast and my coffee I sat. And he turned out the lights. The lights may not be on but somebody is home. I needed to stay motivated and focused. I pulled my hair back, I walked into the kitchen, and Owen looked at me. He immediately went after my hair but I showed him it was all still there. I breathed. It was a victory with my hair. He didn’t try to pull it out. He touched it but from there it was fine, kinda. He referenced it numerous times but at least I could leave it up without a huge meltdown. The vacuum cleaner is still his favorite thing right now and I have the cleanest two-inch section of one floor. The ball that the wind gave us a few months ago popped when he was bouncing on it. He said, “everybody be careful pop the ball”. I turned to him because I was in the kitchen and he said, “it broke another black ball please”. He went on to tell me that he “pop the ball pop the ball” and that he can have another one tomorrow. He might be getting the hang of this asking for what he wants and knows that it comes later, generally in the mail. He didn’t scream but he was sad it broke. He keeps telling me about it. The other two balls he has that bounce are bigger and smaller. He yelled out “get another one”. It thrilled me to my core to hear him so passionate about wanting something and I laughed a little as he told me to get him another one. I looked for the same one online but couldn’t find it. Maybe the wind will bring us another one someday. He fell asleep in my arms. I was thankful today was calmer. We got out for a little bit today and he handled it amazing. I let him tell me where he wanted to drive. He never forgets a thing. I am pretty sure we drove the way his bus would bring him home. He was happy. And that makes this momma happier. Follow your heart, let your joy overflow, and tomorrow embrace your future. Smiles to all and donut daze!
I generally hear him before I see him. These three o’clock in the morning nights are getting to me. And before I knew it Owen was nose to nose with me and said, “blue bed getcha your tablet”. He was clearly as exhausted as I was with his eyes barely staying open as he was talking to me. I tried to get him in my bed but off he went only to return seconds later with his tablet. I told him to go back to his bed. This is where the party began. He was truly trying to gear himself up because he did not want to fall back asleep. I tried all the tricks I know and finally pushed the button on the coffeemaker to get my fuel going. I had gotten him to lay down with me for a few minutes but all he kept doing was yelling “tablet” and spitting into the air so I couldn’t sleep. Discipline is a slippery slope with him because he will just increase the behavior in another way or in different circumstances. I always have to remember the calmer I am the calmer he is, the more I breathe the more he breathes, and sometimes I just want to sleep. I am waiting for the call from the sleep specialist that we were referred to by the first sleep specialist. The new one works with autism. The directions for me to “sit” were given throughout the day. It’s not so much for him to control me as it is to control the situation he is dealing with. If I move anything in the house he has to see what happened with it. When I open a drawer he needs it closed immediately. Lights can only be on in certain areas, at certain times. The list goes on and on and on. I forget his rules but this only creates chaos. And when we are both exhausted beyond compare I forget a lot of the rules. Some days we work through them better than other days. I can also tell when he realizes he is about to go into a meltdown because he will start singing the made-up song I sang to him so many years ago trying to get him to connect his emotions to distraction. Interactions are the best forms of distraction for him and so anytime I could tell he was going into a meltdown I would start rapid-firing questions at him even though I knew he couldn’t answer them and then start singing the song. I still do this to this day. I have to refocus his energy and find ways to calm him. And me. I always tell him we are a team and we have to work through it together. Once we got passed our three o’clock wake-up call he had a pretty calm day. There were moments his emotions geared up but we went through the steps and got back on track. He listened to Chinese on his tablet and played several apps that he has translated into Chinese. He was singing along with the songs in Chinese and saying the words in English when they were asking questions on the app. I can only imagine what he comprehends or could translate once his communication skills develop further. He doesn’t always know how to answer questions so it is difficult for me to know truly how many languages he understands and how many he could speak. He was my constant little eater today but not eating quite as much as the last few days. This momma is exhausted but I’m hoping my plan to keep him up later will translate to him sleeping later tomorrow. It hasn’t worked before but I can pray. Thankful for his hugs, even when we were both a little grumpy. I’m praying for a better night for both of us. Tomorrow we are going on an adventure. I don’t know what it will be but I need to get him to focus on other things besides his routine not being what he wants it to be. Summer school is right around the corner and I know he will be happy. Find your strength and go after your dreams. You can make a huge difference in the world. Smiles to all and donut daze!
“Blue bed” calling happened before the clock struck four. Owen came to my room ready for his day and church on his mind. First and second breakfast were quickly eaten and before we left for church he consumed first lunch. I’m not sure where it is all going but the dude is hungry. We left for church and I wanted to interact with Owen promoting more ways of having conversations so I asked him to help me write a story. I started asking him questions like what his character would be and called. He said it was a “gorilla”. I then asked what his character’s name was and he said, “Mr. Baboon”. Questions kept going and it lead to our completed story with me filling in the details. “Mr. Baboon the gorilla was from the forest and went to the zoo. He wanted to visit the monkeys. Then we went to the petting zoo and petted a sad dog to make him happy. Next we had our snack of apples and chocolate milk, and shared it with the monkeys. The end.” When we got to the snack section I asked if we were eating a meal or snack. I told him after we decided we could keep going or say “the end”. He had chosen milk and I asked chocolate, vanilla, or strawberry. He chose chocolate. We were almost to church and he said, “the end”. When we came home from church there was no stopping the eating train. He ate ten chicken nuggets and almost his whole cheeseburger. He didn’t ask for fries until we got home. He generally never eats them so I don’t get them anymore. I will get them again next time for him and see how he does. Snacks and food filled the rest of the day, even eating ham, green beans, and potatoes for dinner. I’m thankful he is a good eater. There was a calm about him with only a side of anxiousness about his week ahead. I’m praying for a night of sleep. He knows we are not doing anything tomorrow so maybe he will sleep better. Hearing his laugh is the brightest spot in my days and I’m thankful he shared it with me today. I was reminded of the grace we need to provide one another. We hold the hand of the weak when we are strong and the day will come when our hands are held. Each of us has a journey, a story all our own. There are challenges every single day but we reach out for that hand that can help us walk forward to victory. Reach out your hand and walk towards that victory. Smiles to all and donut daze!
The three in the morning wake-up call came calling and I think my eyes were still twitching from the day before. This one was a little different though. Owen was yelling from his bed to me. I’m still trying to figure it out. Generally, he comes to me to tell me he is going back to the “blue bed”. I always tell him he was in the blue bed so maybe he made the connection last night. He however did not go back to sleep. I got up to go to the bathroom and he was already coming around the corner to get his tablet. And then he may have asked for grandma a time or ten. I told him it was going to be several hours before we went. He took his tablet and went back to his bed. He stayed there for about an hour and then came to me to tell me “Owen not in the blue bed”. And I was supposed to “sit in the white bed”. I explained that he could come to sit in bed with me or go back to his bed. He replied that he wanted milk and then from there the food didn’t stop flowing today. He was pretty calm all day except for being very concerned about what we were wearing and his schedule for the next week. I wish I could figure a way to relate his days to his circumstances. He will see his teacher in a few weeks. I showed him his schedule and explained the days but he still screams no when I tell him he will see her soon. He thrives in routine and schedule and every single break in his routine is hard on him. I took him to spend his day with grandma and he was very happy. He played outside with the neighbors on their swing set and then their balance bike and scooter. He had a lot of fun with them. When we came home he was calm for most of the night. I gave him some grape juice and I was shocked when he dribbled a little down his chin and he grabbed it right below his shirt collar to wipe his mouth. It is always wonderful to see him do these actions. It makes my heart sing when he does something so effortlessly and with a purpose. He was singing all the Humpty Dumpty versions he could find and if he wasn’t sure of the version he was humming away with it. I think he is making the connection to what language they are in. He is getting some of them right and the ones he isn’t are new ones that he is learning. As soon as he finds a new one he is asking me to look up other songs with him. When it was bath time his words again impressed me, feeling like he was figuring out how to use my words and turn them into his. He usually tells me the opposite of what he means. He will say “it’s too hot” but he means that he wants it hotter. I have been working with him on how to tell me he wants the temperature. He said, “hotter please mommy feel it needs to be hotter please make it hotter”. I tell him that I felt it and it was hot or if I could make it hotter. I love these connections and I love these days that he feels happy. Find your inspiration and walk through the walls to your victory. Smiles to all and donut daze!
I woke up dreading tonight. Friday nights are the hardest. Owen woke by four this morning so it has given me a lot of time to think about how hard Friday nights are on him. All day he has been ready for tomorrow. Between that and missing his teacher it has been a full day. I wish I knew how to make it easier for him. I can’t seem to find a way to get him to understand breaks in routine or time, even though he can sense time and probably understands it better than I can even imagine. He is learning about clocks and I know it won’t be long before it all clicks for him. I’ve tried a calendar for his schedule again. At least now he isn’t erasing the calendar or pulling it down. For the longest time, he wanted nothing to do with visual cues of any kind. It comes and goes now. When he was little any time I would show him picture cards he would knock them out of my hand, stepping on them, or trying to squish them. The same with sign language. He would immediately cover my hands or pull them apart but now he is open to it, sometimes. He sat eating second breakfast, listening to Humpty Dumpty in German, and then he pulled up songs from Thailand. He kept changing it every few minutes listening to all the different versions he could find. On his third requested breakfast, he saw my flower vase sitting on the counter and he pointed, which I love that he points, and he said, “it’s a vase” with a long A sound and then he said, “it can be vase” using the short sound. So exciting to hear him explain it to me. I see such incredible growth in him. The day was full of twists and turns with emotions all over the map for both of us. He was happy to be wearing his Spider-Man pajamas again and his orange glasses off and on throughout the day. Bedtime came quickly and he fell asleep laying next to me, telling me I was going to the “white bed” and he was in the “blue bed”. He mentioned grandma a time or ten. And he sat up numerous times if I even moved a muscle but then he was out. I pray he sleeps through the night. I’m thankful for his happy heart, his huge smile, and his big belly gut laughs. In times of doubt work it all out and know that you are incredible. Smiles to all and donut daze!
My eyes might be twitching a little as the night wears on. Owen woke around four. It was better than two but wishing it was after five. It’s funny how that hour really makes a difference. He woke calmer than most mornings, thankfully. He almost had a pep in his step. Me, not so much. He stayed busy all day. I can tell he is growing again. He pretty much is eating from the minute he wakes up until the moments before bedtime. He immediately requested his cereal and waffles this morning eating four waffles before I could even turn around. By ten he had moved on to lunch, eating tons of chicken fingers. He ate little snacks in between and actually took a break from food at his regular lunchtime. I told him we were getting ready to go to his therapy and he said, “chicken please”. It would be cutting it close but I started fixing him more chicken. I got ready, finished getting his chicken, and got his things together to go to his therapy. He devoured his chicken and we were out the door. We made it on time to his therapy. I could tell he was tired for it though. I know I was tired too. When he was done they said he did really well but he seemed tired to them too. On the way home, he handled it like a champ and didn’t scream at me. He said he wanted more food as we got in the door. I fixed him a snack and he devoured his cheese. Music, long words, and languages were the name of the game today. He sang a lot and that makes this momma happy. I can tell he is becoming more interested in how you say words because he is trying to practice longer words. He used to get upset when I would stop him to work on how to say the words but now he is coming to me to learn them so he can use the voice-activated command on YouTube. He watched Humpty Dumpty in every language he could find it seems and happily sang along with them. I kept him up a little later hoping that would translate to sleeping later. We shall see. He told me all day that he would “be with mommy” on Friday and still doesn’t want to go anywhere. I hope I can convince him otherwise. He fell asleep quickly in his Spider-Man pajamas, the second pair. I felt as though this was going to be one of those things I needed two of. The backup plan. He made me laugh with his own belly gut laughter and I’m thankful for my little miracle. Go after that dream you’ve been holding onto. Smiles to all and donut daze!
I wanted to shout it from the rooftops it was after five in the morning and Owen slept all night. It was a blessing for sure. I’m praying that tonight it happens again. I can dream. Busy seems to be the understatement for our day even though we haven’t done anything. He was very concerned that he wasn’t going to see his teacher. He asked for her numerous times. He’s clinging to every bit of his schedule that he can. I tried to get him to go several places and he wanted none of it. Tomorrow he knows he is going to therapy and that is what he is waiting for. I can only imagine how confusing and hard this is for him to be on summer break. I’m going to try to not get him completely out of his comfort zone for the rest of this week and then slowly try to do more with him once he’s settled into the new routine. But it will change again. That’s the part about this that is so hard. If he has his choice he would eat the same foods over and over again. In general, we all do in some ways but it’s hard for him to understand when he can’t always get the same exact chicken nuggets or if I buy several brands of chocolate almond milk. He can immediately tell the difference. I also get excited when he can tell me exactly what he wants though. I had two different brands of milk in the refrigerator and he knew exactly which carton he wanted his milk to be poured from. I think he likes the one because it’s thicker or maybe it’s more chocolaty. It is truly the only sweet food he even really loves. I try to always buy the brand he prefers but I also have a hard time getting it sometimes so I want him to be fine with other brands and drinks. The same goes for foods or other products. At breakfast, I fixed some pumpernickel toast and offered him some. He immediately told me “no” as he took the bite I offered him out of my hand. I asked him if he wanted some more and again with the same response. One slice down between the two of us. I put some more on his plate and it was gone. I asked him if he wanted the other slice of my toast and he said, “yes” with great enthusiasm. I don’t remember that he has ever had pumpernickel but he loves rye so I thought I would try. Maybe I’ll get the swirl next. He got his tablet off the counter where it was charging. There is nothing gentle about how he removes the cords when they are charging. I had put my mug down on the counter on the other side of the counter and when he pulled the cord out it knocked it to the floor. It went everywhere. I am so thankful he didn’t even attempt to pick it up. Generally, when he drops something he gets upset and immediately tries to pick it up. Thankfully he ran towards me with the tablet that needed battery so I guess that was the greater concern. He has his favorite tablet and the backup tablet for days like today. Thankfully I convinced him to stay in my room while I cleaned it up, which was another huge victory because generally, he does exactly the opposite of what I ask him to do. After cleaning up the glass I vacuumed the living room because I was afraid of how far it went. Vacuums have always been a rollercoaster ride for him. For the longest time, they caused huge meltdowns if he even saw one. Now he watches reviews on YouTube about them and loves them and hates them all at the same time. He likes to scream if I’m vacuuming but wants to vacuum himself but he doesn’t truly want to vacuum he wants to turn it on and talk about it. He has come a long way though and I’m sure he will be doing his own vacuum reviews all on his own one day. He’s very close. “What kind of vacuum is it”, he said. “It’s a shark rocket pro”, he answered. He generally calls it another name because of the videos but I think he is getting it now that each has a brand name. He asked me for the round veggie chips tonight. I said I don’t have any and he asked me for triangles. I think he is getting the hang of this asking thing. We laughed a lot today and we stay very, very busy. And I’m very, very exhausted. Thankful to see my sweet baby O shine and soar as he is learning new things. Dance in the rain and smile in the sunshine. Be inspired to make a difference. Smiles to all and donut daze!
I breathe. Owen was awake before I could even imagine I was fully asleep. I tried to get him back to sleep but he was focused on three things, being awake, going to the doctor, and his tablet. The last few days feel like one big emotional journey. Not being on his routine is hard and we are only on day one of no school. He keeps asking for his teacher over and over again and when he is going to see her next. How do I begin to explain it’s several weeks away and then. It’s only for a month and then almost two months until he will see her again after that. I breathe some more. By six in the morning, I had drank a whole pot of coffee. Oh, how I pray he sleeps tonight. He had a good morning. He ate as much as I drank I think. By ten in the morning, he had about twenty chicken fingers, waffles, cereal, veggie straws, and numerous other things. It wasn’t long after that we went to his follow-up appointment with his doctor. Thankfully this time he was calmer. His doctor wore blue pants and that helped as well. When a doctor can embrace your child and make sure their emotions are respected you know you have someone that cares. We moved forward on more therapy appointments and referrals. I breathe. Some days it’s hard for me to wrap my brain around all of these steps. I know how hard it can be for him. Once he gets into a routine he loves going places but I know it is a process. When we got home he ate lots more and thankfully was very calm. He asked for his teacher throughout the afternoon and kept saying “Wednesday be with mommy”. We played games together and he wanted to sing with me. He didn’t want to eat much dinner but I figured he was tired and he ate enough with all his snacks that he was probably full. I made the mistake of humming and instead of going to sleep, he was completely awakened. He finally fell asleep in my arms and I felt a sigh of relief when he was comfortable again. He asked for his tablet multiple times as he was falling asleep so I pray that isn’t something that gets on his mind and he’s up in a couple of hours. I’m thankful for his laughter in all the chaos of the moments around us. He was so happy to see the doctor today and he was in the Curious George room and that made him really happy too. He fell asleep in his Spider-Man pajamas since some of the others characters did not make the cut I ordered a backup Spider-Man. Today was a busy day, a good day, an emotional day, a productive day, and there was some sadness sprinkled in but my sweet baby O told me he loved me and he wanted to sit with me and held my hand. Those are the moments that make my hard breaths calmer and my smile brighter. Let your soul shine through and watch your dreams come true. Smiles to all and donut daze!
I have been trying hard not to cry today. Trying. It has been an emotional rollercoaster ride. It was my Grammy’s birthday. I miss her so much. I wish she could give me some of her wise words. Owen woke at four but came to my bed and told me he wasn’t going back to sleep but he did, thankfully. When we woke up he did not want me to get out of bed. He was upset that I even tried. I told him that I had to get up if he wanted milk and cereal, and I had to go potty. After a moment he let me go. I have to remember the calmer I am the quicker he will become calm again. I got up and fixed him breakfast and he was happy as long as I was sitting. As soon as he realized it was time to get dressed he wanted to sit with me but he kept asking for his teacher. I told him we had to get dressed if he wanted to go. He ran off to the bathroom, that was the first step. Thankfully he let me help him get ready. We headed to the bus stop but he was very concerned with my grey shirt that wasn’t green. The bus came around the corner and he was ready to go. I didn’t want him to miss his last day of school. He will start summer school in a few weeks but this is hard for him not to have routine. Any and all breaks are hard for him. His teacher sent me a message that he had a great day. That made me extremely happy. When he came home from school. I had the requested pink shoes on but he wasn’t happy that I still had the wrong shirt on. The rules become overwhelming for what I’m supposed to do and not do. I don’t always follow all the rules but when it is the difference between a three or four-hour meltdown over the color of pants I’m wearing or a shirt that is wrong I will certainly try to work with him to calm him. I’m hoping that soon we can have more answers and ways to help him. The night was full of him eating continuously. He likes to guzzle his milk and this did not sit well with his stomach. I’m hoping it is from this and not something else but we are going to a follow-up doctor appointment tomorrow from last week so we will discuss it as well. He was in a great mood all night. We sat and talked about his day. He really didn’t answer my questions but I knew a lot of the answers already because of what his teacher told me. He struggle a little bit to fall asleep but he finally did. I pray he sleeps through the night or at least a little later in the morning. I’m hoping he will want to go do some activities this week ahead. One day at a time. I’m thankful for his smile and his amazing gift to make me happy even on a hard emotional day. Make today matter. Find your strength and keep moving forward. Smiles to all and donut daze!
I mostly slept but more importantly, Owen fully slept. He was asleep before nine and he almost slept until six in the morning. I’ll take it. He even slept through me going to the bathroom. He woke and came to my room. He immediately said the words I figured he would say, “blue bed”. I told him that he came from the blue bed and he didn’t have to go back to bed it was time to get up. Then I told him that we could say good morning to each other. From there he said “good morning mommy” and off he ran. I told him he needed to go to the bathroom first. Then I told him again. And then again. And again. And one more time. And then I told him to go to the bathroom first, again. Then I had the discussion with him that he should have gone to the bathroom on the first of the hundred times I said it. I can’t decide if it is selective hearing or comprehension or a combination of both that keeps him from doing anything the first time I ask him to do something. I would be happy if it was even the second time I asked him to do something. I end up using the mom voice that is supposed to be saved for special occasions but I seem to use it all the time. He did great about getting ready for church on about the ten or fifteenth time I asked him to get ready. When we left church he wanted “ten chicken nuggets and cheeseburger please”. It’s more about the request and journey than the actual food. When we were in the drive-thru I was asking him to help me add money and he was able to tell me how much a dime please a penny would equal. He ate his lunch and I said do you want something else, me thinking I was referencing the food. He said, “money”. For dinner, I fixed macaroni and cheese with broccoli. He ate a lot of it, even the broccoli. And then he requested shrimp. I can’t believe tomorrow is the last day of school. He will go to summer school but it’s such a short amount of time. My heart breaks for the lack of routine for the summer for him that he thrives on. One day at a time I remind myself. I pray that he sleeps great tonight and that tomorrow he has an incredible day. I asked him what he wanted for his teacher and he said, “a present”. I asked what kind of present and he said, “a new hat”. He even told me he wanted a baseball cap for her so I’m not sure why that is what he wanted but I let him choose. Today is the first day of the rest of your life. Reach out and grab your dreams. 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.