Every day is a day of expectations. The choice however is how you accept when life throws you not only a curveball but an elephant carrying that curveball, while holding a pizza, singing a song, and stepping in the way of everything you are doing, you breathe. You have to remember to breathe. Sometimes that’s hard. Owen was up at five. I may have woken up before him, maybe. He got his tablet and I woke cranky. I stayed up way too late, worrying about way too many things that I have no control over. As soon as Owen was awake he was ready to go to therapy. I told him that it would be several hours and we would eat some breakfast first and then we could go for a walk. I pushed him in the directions he wanted to go for the most part. When we got to the police station I started to cry and I tried hard to keep the tears from running down my cheeks. I keep putting off taking him there. I want them to see him, interact with him and know who he is in case he ever needs them for any reason. I told him if he needed help that this was a place he could come. He said, “help down the slide.” I cried. He wanted one of them to go to the park with him and watch him go down the slide. We kept walking. We walked around to the windows he loves. He talked about the doors in different places and the windows being like computers. When we were heading up the street he said, “car wash has vacuum.” I can’t remember how many times he’s screamed about the car wash but it never once dawned on it was because of the vacuum. We walked by the post office and just like he had been doing it since he was young he reached his hand to touch the bricks. He absolutely loves the building and the bricks but going into the post office causes huge meltdowns. We walked by the fire station and I said the same thing to him as when we had walked by the police station. I tried not to cry again. “Vent monster,” he said as we walked home. I’m not sure where it came from and what it meant. When we got home I helped him get out of the little red wagon and I folded it up to put it in the car. He looked at the telephone pole and he said, “climb” which is more like a hug but he does try. I told him not to climb it because one day he will be able to and I don’t want him to climb it, as I was saying the words he kissed or licked the telephone pole. No splinters and he happily ran to the porch afterwards. He really had a pretty good day after that. He ate a lot for lunch and a pretty good dinner and sandwiched in between meals he went to therapy. I went a different route because of all the construction and it upset him but thankfully he realized we were still going even though I told him we were. I try to explain why we are doing something different so he understand. The rollercoaster ride of behaviors went on throughout the night and he said he didn’t want to walk tomorrow but I think it will change. He was asleep before I knew it and hopefully, the requests for his teacher will be less tomorrow. I know this is so incredibly hard on him. I’m thankful for his laughter and it made my day when he wanted his book we read today with him at dinner. Write your dreams out loud and watch them come true. Smiles to all and donut daze!
I want to cry but I have to breathe. Owen woke by four. I heard him entertaining himself for a few minutes before he came to me. He wanted to talk to me about the iguana that isn’t an iguana and the ladybug that is an insect but not what he wants it to be. I try to make him understand he has to say what things actually are or explain what he wants something to be. I know it gets very confusing for him especially when he watches so many different videos with the alphabet and they are all different objects for each letter. After we went through those steps he moved on to the other game he loves. He wanted me to play it with him but by this time I needed two things, coffee and the bathroom. I’m not sure which one I needed more. Once I got up he immediately started talking about “no chocolate milk”. I gave him some anyways and cereal. After a while, we read our book and as soon as we were done he ate his cereal and asked for a waffle. Soon we got dressed and we were off to wait for the bus. I tried not to cry as they pulled away. His last day until August. I knew he would have a hard time processing it all. When he got off the bus he immediately started asking for his teacher. I knew he would. And he didn’t stop all night except when he was asking about his therapists for tomorrow and grandma for Saturday. I had asked him if he wanted to go walking in his little red wagon and he said no. I told him we could go walking in the morning. We’ll see if he wants to go. One day at a time I remind myself. The behaviors will change over the next few days and it makes me long for his routine that he so desperately loves. I already had to stop him multiple times from trying to “swim in the water” in the toilet. I can’t limit his access because that defeats the purpose but it’s also going to keep me on my toes for the next few days, weeks, months, all a guess. He was mostly happy all night and that’s what matters. I’m thankful he has a few things to look forward to and I’m trying to plan more but activities are also hard on him as well so we take one moment at a time and we breathe. I convinced him needed a bath and for someone that didn’t want to take a bath, he sure changed his mind. He fell asleep in my arms and I’m praying for a good night’s sleep. We laughed, we loved, we learned today and he sure made me smile. Today may not have gone according to your plan but maybe the new plan will lead to something bigger. When all else fails succeed at something else. Smiles to all and donut daze!
I’m dreading tomorrow. It makes me sad to think about and there are even more emotions than I can describe. It’s Owen’s last day of summer school. He loves it so much and then it will be almost two months before he goes to school again. He thrives on the routine. He said to me yesterday before he went to bed that I would pick him up on Thursday for therapy. This just made me want to cry. I will try to find activities to do with him but that can be hard. I got him a new little red wagon since ours was taken from our porch. When he saw it he was happy. He said, “wanna go see the horses” and then he said, “na silly not the horses today.” We stopped going because it was getting hard for him. It seemed like going anywhere, even for walks were getting emotional for him. When we were getting ready for school he was singing a song and ready to go, after a good but also rocky morning. He had slept until five and did what he does now by going straight to the couch. No breakfast he said but he ate what I made him. He also was very concerned about my pants. When we got outside he wanted to hear all the phrases repeated in all the languages until his bus arrived. When he got home I told him I had a surprise for him and that’s when I showed him his little red wagon. At first, he didn’t want to go for a walk but I convinced him and then he didn’t want the walk to end. I told him we could go another day. We sat at the kitchen table eating our snack and he said, “baby o I’m cute.” I have to agree. I had gotten Bugles and squirt cheese like my momma always gave me. I showed him how to hold the chip in his one hand and together we squeezed the cheese into the little trumpet that he called a triangle. He loved the cheese and he helped me do several more. I try to find things like this that help with his fine motor skills. He wanted to play with me on his tablet through several games and in no time it was bedtime. He wanted to wear his orange glasses to bed and I didn’t try to stop him. After he fell asleep it took me numerous tries to get them off of him because he kept grabbing them back to put on his face. I knew it would be fine if I left them on him but I still didn’t want him to sleep in them. I remember my Grammy would sleep with hers all the time. I’m praying once again for a good night of sleep for us, I’ll take five any day even though I’d love later. I’m thankful for the steps forward we made today. In every challenge know that tomorrow will be a brand new day. Smiles to all and donut daze!
I woke up still in that dream state, wondering what planet I was on. Or maybe it was because Owen was listening to his tablet and singing something about Venus and Mars. It was a little after four. That’s better than two in the morning I remind myself. I got up to use the bathroom and reminded him he needed to do the same. “No bathroom today”, he said, quickly followed by “no chocolate milk”, both meaning that he wished I would go back to the “white bed” and let him do his thing. I was completely cool with me going back to bed. I lay in bed listening to more planet singing and tablet games. I was halfway awake at this point and needed the old one two coffee punch to get fully awake. It seemed like it took forever to brew the coffee but it was worth it. He wanted to show me the videos he was watching on his tablet. He told me all about them and I loved his explanations. We read together and I asked him if he was ready for some cereal and his chocolate milk. He said, “no” but I put some out for him anyways. I started working on my computer since we still had about an hour before it was time to get ready. I was finishing up on a project I was working on and it was like Owen knew it was time to get ready. He immediately started asking for a waffle. By this time we only had a few minutes to get ready for the bus. He hadn’t eaten the cereal I put out for him and he would be eating at school so I told him we didn’t have time. I knew what would come next because it was routine. He first said, “next time” and then he immediately said, “when you come home after school you can” and he paused, almost leaving the words hanging but I knew he would continue after he said it again. “When you come home after school you can have a waffle”, saying the whole thing this time. It’s a mix of my words that I’ve said to him many times about when he comes home after school we would do certain things. When he came home from school the waffle was the furthest thing from his mind. He did eat a lot of snacks when he came home though and a pretty good size dinner. His words and phrases come from years of listening to videos, phrases I will say or someone else he is around, something he heard once, or any other combination. He was watching a video and every time at the same place that he kept rewinding it to he would say, “whatever” and then breaking into some language that I could not completely distinguish. He watches a lot of reviews of apps and videos so I think he was doing the review in another language. We played a lot of his games and he was very interactive with me. The night went quickly and he fell asleep almost instantly it seemed as his head hit the pillow. He only has two more days of summer school. My heart is sad for this to end since he loves it so but I have to remind myself it is only a couple of months. His smile warms my heart and I’m thankful for his progress forward. Find your inspiration and know that you can make your dreams come true. Smiles to all and donut daze!
The happy dance happened today. I woke by five, listened, and heard nothing but the sounds from the world around us. I fell back asleep even though I really needed to go to the bathroom I didn’t want to take the chance of waking Owen. Six o’clock came and I heard a noise. He was awake. I heard his tablet turn on and I suggested he go to the bathroom first. He did. He wasn’t thrilled about it but he went. Six o’clock in the morning, I’ll take it. We had an extraordinary morning. He was so happy and he was talking to me about everything. He came to me and showed me a video he was watching on his tablet. It was going through the alphabet and using pictures of items that started with each letter. He was telling me facts about each item. He then sat with me and we read a book together. He ate his breakfast late because when he got up he said, “no chocolate milk”. He wants to wake up and get his day started now it seems. When we started to get ready for church this was when everything seemed to change. He became concerned about the banana again. Only this time it was because I didn’t have one to take to church with him. He wanted one to go in his bag. “Not take a banana with you,” he said, looking for it everywhere and kept repeating he needed a banana. He started doing his mouse walk to the bathroom. He takes his hands and moves them up towards his chest and then hunches over, walking haphazardly around, slowly to his destination. At first, I thought maybe he was trying to mimic the way I walk since I tend to throw my leg out when I walk because of the hemihypertrophy and arthritis but now the movements feel more calculated. By this time we were running late and he was still very concerned about the banana. I rushed him through the process of getting dressed and tried to convince him we would get bananas later. So here we are again on the rollercoaster banana story. And now all day I’ve been singing the song Yes, We’ve Got No Bananas. On the way to church he went through his usual lines about the stoplights but today he told me that “pizza is triangles lights”. We just go with it. He started saying that stoplights were triangles and now he finds things that are shaped like triangles. He did great at church and when I picked him up after the service they said that he found one of the fake bananas and he wanted to throw it in the trash. I’m just thankful there were no meltdowns over it today. When we got home with his ten chicken nuggets and cheeseburger he devoured it and pretty much everything else I put in front of him for the rest of the day. He was very expressive and talkative with me for the rest of the day. I’m thankful for his interactions and wanting to play with me. Sometimes we wonder why me. And sometimes the wonder is why not me. I’m thankful for the gift of my son and all he has taught me. Cherish the moments you have for today is a blessing. Smiles to all and donut daze!
I heard Owen once again a little before five. Really I heard Owen’s tablet a little before five. His really, really loud tablet. We are so close to what seems like a breakthrough with sleep but I also feel like we are a million miles away from it too. At least he has been falling asleep quickly at night and getting more rest. He was really good about sitting in the living room and watching his tablet and then the tv. I, however, think everyone in the whole neighborhood a few blocks away could probably hear the tv as well until I turned it down. That’s the beauty of having the remote control app on my phone. There may not be a way to always control the sound from the tv itself but I can turn the volume down or the tv completely off. Once I got up he immediately wanted his breakfast and started talking to me about the bananas that were not in the trash can. Distraction tactic number five thousand nine hundred and sixty-three came into play and I started talking to him about the planets. Anything and everything I could think of to take his mind off the bananas that weren’t even in the house much less in the trash can. I asked him to name the planets. He went right through the list and in order. I asked him to tell me different features about the planets and he started saying which were gaseous, the smallest, the largest, and he kept going. He started singing about the planets and he said, “Mars April”, laughing hysterically as he said it. It was like he knew he made a joke or that he was saying something that wasn’t correct. He was very calm about going to grandma’s house and only asked me a couple of times when we were going. He wanted to make sure I was wearing blue pants and that he was too. I kept our routine of reading going and then we played in the water. I had us both soak our feet in little tubs. I like to do different activities like this with him to give him different sensory input and teach him patience as we do the activities with our feet in the water. He loved the ones we did today and didn’t really want to finish but I told him it was time to go to grandma’s house and he quickly shifted gears. We were off quicker than most Saturdays and he stayed with his grandma all afternoon. When I got there my mom and I talked for several hours while he continued to play. As I sat in the chair I would cross my legs or put my other foot up on the opposite knee. He did not like this one bit and would race over to knock my foot off my knee. He does not like how that looks and gets so upset by it but I tell him he can’t uncross my legs or knock them off. He then will tell me “we don’t hit” or something else similar as he is actually hitting my foot or moving it off my leg. It’s a process he has to go through while he is learning behaviors, actions, and reactions. When we left he did great in the car right home until he needed to tell me it was raining when it wasn’t. He got very upset that I would not tell him it wasn’t raining. He likes to say the opposite of what is actually happening and I try to make him understand that he needs to say what is happening instead. I breathe. The night went fast. And the dude was hungry. He ate a whole plate of shrimp and veggies and as soon as he finished the last bite he requested “more shrimp please”. It didn’t take long after that before his sleepy eyes and his full belly won and he was asleep. I pray he sleeps well again and he is very ready for church tomorrow. Thankful for his amazing laugh and his big blue eyes that have a brilliant sparkle. Find the joy in your heart, the light in the world around you, and share your smile. Smiles to all and donut daze!
I heard Owen in the living room right at the new wake-up time of five in the morning. I’ll take it. He went straight for his tablet. He didn’t come to tell me about the blue bed or my bed. I did however tell him he needed to go to the bathroom before he could play with his tablet. His response was, “no bathroom today”. And my response is always “then no tablet today”. He then goes on to repeat “tablet tablet” several more times and off he runs to use the bathroom. It’s like we have to go through all the steps. He knew immediately how much time until we would read together and when we would get ready for school. It’s interesting to me that he can sense time because he can’t read the clocks, that I know of. He got very concerned that I had hidden bananas in the house. “Bananas go to bed banana in the bed”, he said. He quickly followed it up with “banana in the trash throw it away” and on and on about the bananas that were not here. I’m not sure why he is concerned about the banana again. He’s gone back and forth over the years about the banana but I thought this was one we wouldn’t cycle back through. He used to have huge meltdowns over one single banana but we’ve worked through this for several years and he seemed to be doing fine with them. My heart aches and tears float in my eyes. When something that isn’t even in my house has him so concerned and one wrong word that I would have said could have sent him into a huge meltdown. And distracting him only lasts so long. I remember when he was little and he would do the same behavior for an hour I would try to distract him. I didn’t understand his need to do it at the time. It didn’t matter how long I tried to occupy him as soon as I let him go back to doing something on his own he would go right back to the activity I was trying to distract him from and he would have to finish his emotions. That could last five more minutes or five more hours. It was the process he needed though. When it was time to read I had gotten him a new book. As soon as he saw it he took it from me and said, “Pete the Cat”. I’m not sure how he knew it already but he was excited. I read it with him, having him read some of the words and then us singing the little song it showed together. He was happy about it. The morning went fast and off he rode on the bus. My heart sank a little. Only three more days of school next week and then he doesn’t go back until August. He loves school so much and thrives in the environment. I have to keep pushing us forward. When he got home from school he was happy and calm, mostly. Our internet keeps going in and out and that upsets him. I don’t blame him. He didn’t eat many snacks today but he had a huge dinner. He told me he didn’t want to take a bath and then he said he did. I think he likes to see if he can stay up longer if he suggests the bath after the fact but he can hardly stay awake in the tub. I pray he sleeps through the night once again even though he knows he is going to grandma’s house tomorrow. His smile, his laugh, and his words fill my heart with gladness. Know that you are important and today is the first day of the rest of your life. Smiles to all and donut daze!
Before five in the morning is close to five in the morning I keep telling myself. Owen woke before five, came to me with his tablet, asking me to help him search for something on YouTube, and me saying “hey how about we sleep a little longer”. “Nopedy nope”, he said, and off to the living room he ran again. At least it was most of the night he was asleep. He was in a good mood because today was “therapy day therapy day”. It always makes him happy. When I picked him up from school to take him to therapy I asked him lots of questions. I like to get him to interact with me in the car because he generally only wants to tell me how to drive and all the lights are still very concerning for him. I’m trying to keep him occupied and also promote conversation. It’s easier said than done though. He has a hard time focusing on the conversation, especially in the car. I started asking him questions about animals. I asked him to name a tall animal, he said, a mouse. I said, do you think a mouse is tall, he said, “no a jaguar”. I asked him what was taller than a jaguar and he said, “a building”. I asked him again if he knew a tall animal and he once again answered with “mouse”. I said, how about a giraffe or an elephant and he said, “no”. This is how it goes a lot of the time. He at least goes through the motions but sometimes he will say the opposite of what he means or completely random things and that is when he is searching for a reaction. I moved on to ask him about what different animals ate. This was a little more interesting and informative. I asked him what do seals eat and he said, “ducks” without any hesitation. I asked about a few more animals and most of the answers were “food” or “grapes” which happens to be his answer for any time I ask him what he had for breakfast or lunch at school or what he wants for dinner. But he does not want to be near a grape or eat a grape so it is a very interesting dynamic that is happening right. His therapists said he did really well today and can see improvement with him. I could tell he was much calmer and it is showing with the different activities he is doing. When we got home it seemed like it was nonstop eating and grapes were not included. He wanted to do more activities on his own but he asked me to help him several times. The night went quickly and I’m hoping that he sleeps a little later tomorrow. He knows it is Friday but he kept talking about seeing grandma so I’m hoping he doesn’t get his nights mixed up. He was laughing hysterically when he went to bed but he didn’t respond to me about what he was laughing at. He fell asleep quickly and then woke up asking for “help”. I asked him with what and he said his tablet, which wasn’t in bed with him so he snuggled back into my arms and he fell right back asleep. I think he is starting to express his dreams or maybe in his sleep he was thinking about his tablet. His smile lights up my world and I’m thankful for the gift of my son. No day has to be ordinary if you add a little extra to it. Have an extraordinary day and enjoy the rays of sunshine that come your way. Smiles to all and donut daze!
Owen didn’t sleep all night long but at least he came to me and went right back to sleep for a few hours. And so did I. Exhaustion has been heavy lately. I’m thankful he has been calmer though. His words and actions are getting stronger every day. He didn’t want to read with me this morning and I didn’t push it. I want him to still have choices. I told him since he read to me last night we could skip this morning. I told him that I really enjoy reading together so I hoped he would want to read with me tomorrow. He listened when I told him we needed to get ready for school. He dragged his feet some but he did great. He saw a bag that was hanging on our coat tree. It was like the reusable shopping bags and he said, “that’s a present.” I said, “do you want a present?” He said, “no you give present.” He is really thinking everything through. We went outside to wait for the bus and he wanted Siri to say phrases in all the different languages. Sometimes he just listens to the phrases but today he was repeating them all. He felt very strong and vibrant to me today. His teacher sent me a note telling me how great he was doing and that he was doing better about thinking through and answering questions. This makes me so happy. His progress is amazing. He watches a video and it uses a ladybug for the letter i and says it is an insect. He always shows me the screen and says “i is for iguana” and then he says “this is a ladybug kinda an insect kinda a bug”. When he was eating his dinner he spilled some of his milk on the floor. Before I could even react he got up and got the paper towels, all the paper towels but at least he was wiping up his spilled milk, all by himself, and without screaming or being upset. He really didn’t get much of the milk up but he was doing it all by himself and that was the important part. He doesn’t understand that he has to tear the towels from the roll so they were strung across the room but I looked at that moment as huge growth. He is thinking through problems and solving them. He fell asleep quickly and I’m praying that he at least sleeps as much as he did last night. Thankful for his growth and these moments that make me so proud. The journey of life can be challenging but remember tomorrow is a brand new day and there will be victories to win. Smiles to all and donut daze!
Oh, please let this be a trend I begged God this morning. Owen slept until after five. I hope it happens again tonight. I heard him in the living room getting his tablet when I realized it was after five and I wanted to scream it from the rooftops. We had a very busy morning and he continued to be calm. He wanted to read a book about colors. It was written in four languages so I asked Alexa to read it with us. Owen found this very fascinating. I told him this morning he would be going to the eye doctor when he got home from school. He was beyond thrilled. I always try to make appointments more fun and important to him. He did great getting ready for school and he told me he was going to tell his teacher that he had an eye appointment. He didn’t mention the lady he saw last night until we went outside to wait for the bus. He then wanted to know where she was. When he came home from school he was very patient with me and listened as I explained when we would be leaving for his doctor's appointment. When we got to the office we sat in the waiting room for a few minutes. He was very interactive with everyone. He wanted to talk about who was wearing blue pants and who was not. I reminded him to breathe because I put my arms around my leg and he pushed my leg down to the ground. He needs me to look exactly as he thinks I should. He got really happy when a girl walked into the waiting room with ripped jeans that had tons of strings. He said, “I love you” to her and her mom. I don’t think they heard him but he was so thrilled she wore these pants. He did amazing for his appointment. He was able to follow all the instructions and go through the steps when they asked him to. He was much calmer this time than last. We were waiting for his eyes to finish dilating and we started looking at glasses. He picked out a pair of glasses that had orange arms and a black front to them. They are going to be able to tint his lenses orange since he loves his orange glasses. He should get them in a couple of weeks. His old glasses will still work for him so he can wear either pair now with the tint or the regular ones. He wanted chicken nuggets and a cheeseburger on the way home so we picked it up and he ate every bit of it for dinner. The night went quickly and he wanted to bring his polar bear book to bed so he could read it to me. How cool is that, I thought. He fell asleep quickly and he seemed to have a great day. I’m so proud of how well he did today. We may be a product of our past but we can change our future. Never give up on the hope for tomorrow. 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.