The rollercoaster world is loud and I think that is what woke Owen up or maybe it was me going to the bathroom. Either way, he was up by four wanting his tablet. I told him to go back to bed and his response was “sure go get your tablet.” No matter what I would have said he still would have been on a mission to get it. I told him again to go back to bed. He went to bed for a few minutes and then off to his tablet he went. This is where I have to decide if I want to give in, be yelled at, or have him staring at me an inch from my nose saying “tablet” with every breath he takes. I think I was cranky at that point. He turned all the lights off that I turned on even though he has a light on in his room all day long. This is his new old thing. When he was little, he would go through the house turning off the light switches even though he could barely reach them. It seems whatever was old is always new again and this feels like something he is cycling back through. He played a lot on his computer today. And when it pulled up, he saw the first screen and immediately told me it said “welcome” and then behind it the outline of a rhinoceros. When we went outside, he started talking about the neighbor's air conditioner. He then talked about when we got our new air conditioner. It is almost been three years since we had our new air conditioner installed and he is telling me about the people that came to install it, and what they wore. I have a hard time remembering what I wore yesterday, so I certainly cannot debate with him if he knows what they were wearing or not. We went to his vision therapy and he was very happy that he had gotten to go. This did not go according to plan and he was extremely hyper. The doctor was running a little bit late and he couldn’t concentrate on all the activities but in general, he did pretty well. He has a hard time waiting but thankfully he did well. He ate dinner, but not that much however, he had been snacking all day. Tomorrow, his routine at school shall return, and he also has another appointment and he is excited about going. He was extremely tired from waking up so early and he still has sinus issues. His prayer rings through my head and I’m thankful he understands why we pray. He was out almost as quickly as his head hit the pillow. The journey is worth the effort when the reward is Grace. Find your smile, share your story, and share ours. Smiles to all and donut daze!
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I think the night air woke me at every stir but thankfully Owen slept until five. Then I was a bee wrangler in my bathroom before I even had a chance to get my coffee. When I talked to Owen his first word was “tablet.” I said, “Happy Easter.” He said, “We do Easter eggs.” I asked him if he wanted to go on another Easter egg hunt. He said, “No.” He did have a lot of other plans though. Out of routine means, he clings to hope that his routine will quickly return and my heart breaks a little more each and every time his routine gets changed because everything is harder and he can’t focus on even the little things like going to the bathroom or eating his lunch. He was ready to get his day started so he could go to church and then ride his bike. However, he was seeing much further ahead than this. He was ready for his Monday where he is hoping to see his grandma and then he is ready for his Tuesday where he is going to see one of his doctors and then he was ready for his Wednesday where he is hoping to go bowling and then he was ready for his Thursday, which is his favorite day and gets to see his therapists and the list keeps going. On our way to church, he started asking me about the body. At first, I wasn’t sure what he was referencing because he said, “bones” and that doesn’t always mean the body. Then he said, “You know what you can do you can reference it.” He went on, “skeleton you can YouTube that.” He started saying something that sounded like the bones but I’m not sure. We got to church and he was on a mission to get to class. He did great and afterwards he rode his bike around in the parking lot. I always have to remind him to stay near the park so that he doesn’t go by the cars when they are leaving. Afterward, we picked up our lunch and headed home. I am working with several of his therapists to try to get him to stop picking apart his food. In general, he was in a pretty good mood. He just wanted to get his day moving along, so it could be Monday. I’m trying to get him to focus on the day that we are on, but this is not always going over well. He also was very concerned about taking a bath, because that meant his Monday would come quicker or so he thought. He fell asleep with only coming to tell me once about his day. I’m thankful for another good day even if we were both a little anxious. There’s a beauty in a day, even in a very rough, tough, emotional day. The miracle continues and the melody of our heartstrings can be played and changed into a song that is worth singing. Find your melody and sing it from the rooftops. Smiles to all and donut daze!
I was thankful after the initial getting out of bed multiple times Owen slept through the night. The morning felt like a rollercoaster. He slept until six and then he wanted to play on his tablet. I was able to have a whole conversation with him before he ran off to play though. I try to get him to interact with me so that he understands more about conversations. His words are becoming more fluid but conversations are not as easy for him. We are all still trying to get him to answer correctly the first time. When he tries to explain something he has to work through it. If he’s looking at a dog, he will call it a cat or if he’s looking at a red car, he will say it’s a yellow car. I’m not sure why the first answer is generally never correct. I’m not sure if it’s reactionary or if he is trying to process it and that’s why he can’t say the correct answer the first time. I asked him several times over the morning if he wanted to go bowling, and each time he said no. On Saturdays, if we don’t go early there are times they have league bowlers and they take up all the lanes. I said to him that if we didn’t go early, we wouldn’t be able to go bowling today so I asked him one more time if he wanted to go. He said, “bowling bowling.” I told him then we needed to get dressed right then. He didn’t hesitate this time. He’s been asking about his other pair of sneakers lately and each time I tell him he can wear whichever pair he wants to wear. I didn’t think he liked the sneakers because he never wanted to wear them when I first got them for him. After all, they weren’t blue enough I thought. Both pairs of his sneakers sit by the door on the shoe rack and he can choose which ones he wants to wear. I showed him where the other pair was and he chose to wear them today. He was excited about going bowling and he did well while we were there. He’s getting close to being able to throw the ball himself but for now, we still bowl together. I help him throw the ball down the lane but he is now carrying the ball to the lane and I know it won’t be long until he’s doing it all on his own. When we left there, he wanted to drive by the depot which now I found out is really the blue house near the depot that he wants to see, and technically I think it’s the little metal shed near the house that he wants to see. When we got home, it seems like we ate constantly until bedtime. He had a meltdown over me not being able to say the words correctly for a YouTube video he wanted me to help him look up with the voice-activated option. When this happens I try to walk him through the steps of why I cannot say the words. Sometimes this is a matter of me not understanding what he is saying to me and then there are other times when he is speaking in another language, and I can’t say the words. I explained to him that he can say the words to the voice-activated option, but he doesn’t always do it. When this happens, I take a moment for him to try to explain it to me again and then if I see that he’s still getting upset, we work on our breathing exercises. I always tell him I need to breathe as much as he does. Finding ways to help him center himself again is very important because the more that he can realize he is having a meltdown and the process of calming himself then will help him in the future. He only got out of bed two times before he fell asleep, and he’s ready for his big Sunday with his friends at church. He’s very concerned about the days ahead but I’m trying to get him to focus on one day at a time until the night and then we can talk about the next day. It’s hard for me as well because it’s something I have to focus on to be able to explain what I want him to work on and for me to stay focused on one day at a time when he is so focused on all the days ahead. I’m thankful for our good day and his big smile. Remember to share your joy, focus on the amazing moments in your life, and use this as motivation for tomorrow. Smiles to all and donut daze!
To say all the days blend together becomes realer and realer and realer and a little more real. Owen woke before three. So yes the days are blending together. Any and every break causes a ripple effect of timing. He was concerned about not seeing his teacher until next week. It is his pattern. It is what we do. He goes through all of the emotions and generally, this wakes him up in the middle of the night because he is thinking about it. I tried to send him back to bed multiple times this morning but he just kept coming back asking for his tablet. After a little bit, I knew there was no trying to convince him to go back to bed. I told him he could have his tablet if he went and laid down in his bed. This worked as well as it usually does. He stays in there for a while and then he comes to tell me that he is in his bed. I lay there, listening to him, talking in his bed about what he was watching on his tablet. After a little bit longer, I got up myself. He immediately asked when he was going to see his teacher, when he was going to see his grandma, and when he was going to eat breakfast. I have been trying to get him to understand that he can ask a question, talk about it, and then be done with it. I explain to him that his emotions are valid but it’s not something that he has to continue to talk about. I fixed him his first breakfast and he ate it all. Sometimes I wonder if he just gets hungry at night and then his body wakes him up. Mostly I figure it’s what’s on his mind but I always think maybe it’s food. In general, he was in a pretty good mood throughout the day. There were only a few things that caused him to scream or be upset. But the breaks are always hard on him. He wanted to take a bath in the middle of the day. He was going through whole conversations about being stuck in the bathtub and what he needed to do. He was pushing his leg back and forth, telling me that it was stuck, and he couldn’t get out of the tub. He would then laugh and do it again. Most times everything is about the repetition. He ate a lot of snacks, but he didn’t want to eat the food he requested. He ate more of the random food that I gave him like hummus on crackers and pimento cheese. He didn’t want to go anywhere today even though he asked to go everywhere. He wants to go bowling tomorrow and to see his grandma. I told him that we would have to wait and see. And bedtime kept me on my toes but he also fell asleep relatively quickly. I’m working on prayers with him and sometimes he initiates saying them. Tonight’s prayer was my favorite. He said, “Dear God, I’m thankful for Mommy, Amen.” He said, “I love you” and he was off to sleep. I’m thankful he had a good day. Follow the dream inside your heart and watch the world smile. Smiles to all and donut daze!
Owen woke up with a mission and that was to get to the white bed so he could go to school and then to therapy. He succeeded and it was very early at that. He also was very concerned about not seeing his teacher tomorrow. To say the word “very” is more like using it as a quadratic equation that hasn’t quite manifested yet. I’m trying to get him to understand the “one and done” theory but so far this all seems far-fetched to him. I want him to understand his words are important. His emotions are important. But so are mine. He doesn’t need to repeat his questions over and over. When I answer he starts over again and when I don’t he has a complete meltdown over my words and actions so I want him to understand that he knows what is happening and we can process it together. We stood outside waiting for the bus. He couldn’t understand why our neighbor waved to him from her doorway instead of driving away in her car. He wanted to run with her pulling away. I explained that she was probably on vacation and not going to work. This didn’t make sense to him because she is supposed to leave in his thought process. I told him that she wanted to tell him good morning so that’s why she came to the door. These are great learning experiences for him even though they can be hard on him. No bunnies interfered with his running and playing this morning and he was happy about that but also asked if he could have a bunny so I’m not sure if this is progress or not. I picked him up for therapy and he wanted to go by the underpass, one of the underpasses. When we got to therapy he checked in three times. He is getting better at the details and what he should say. I am trying to find ways to keep him from biting his fingers so when we went in we wore our masks. This results in him chewing on his masks but not his fingers. We tried numerous products over the years and nothing has helped. One of his therapists showed me some gloves that only cover two fingers on each hand and thankfully they cover the pointer fingers so I am going to order a pair of those to try. I try to redirect him and have him count through his emotions but his poor fingers still get red. He hasn’t broken through the skin but that is my concern. When he was younger he would chew through the front of his shirts almost daily. When we got home from therapy we worked on our paintings and I’m always thankful he helps me paint the backgrounds with a hand-over-hand method working on his fine motor skills. It’s a wonderful feeling being able to work on our art with him. He played his harmonica for me, and I can see where the notes are becoming more clear as he learns the notes. It only took one time for him to come to tell me that he had no school tomorrow before he stayed in bed and fell asleep. He’s very anxious about not seeing his teacher tomorrow and for the long weekend. Art isn’t about the moment it’s about the journey and I’m thankful I’m sharing it with my sweet baby O. Find your joy, share your story, and know that you can make a difference in this world. Smiles to all and donut daze!
Once Owen got to sleep he slept through the night. He couldn’t get it off his mind that he will not have school on Friday. I didn’t want to mention to him that he also will not have school on Monday. I don’t even wanna think about the fact that he will be out for the summer at the end of May. He is going to go to his extended school year but it’s only for a few short weeks in June. I have to breathe through all of this. Routine means the world to Owen but I can’t always give him exactly what he wants. He woke up in a pretty good mood and was ready for his day. He had requested to go bowling with his friend and so far when he woke up it sounded like he still wanted to go. I had high hopes that he would go once he got home since he has been enjoying bowling again. After I got my coffee, we went and sat down. He worked on his tablet for a while and I drink my coffee. I had him brush his teeth and he asked about his battery-operated toothbrush. I had to get rid of his last one because of him being sick. He never wanted it on but now that he doesn’t have it he is constantly asking for his toothbrush to be on. We started getting dressed and he was listening to different songs on his tablet. I asked him if he could skip for me. I started playing the song Skip To My Lou and he grinned from ear to ear. He attempted to skip back and forth between the living room and the kitchen, but it was still kind of like he was lifting one of his legs to move the other one forward. He has come a long way though. We went outside to wait for the bus and he was upset that the neighbor wasn’t coming out. He started running back and forth between the stop sign and the telephone poles until a bunny got in his path again. I’m not sure where he thinks the bunnies should be, but in the yard is not where he wants them. When he heard his bus he ran to the stop sign so he could see if the bus was coming. He watched it as it came around the corners and turned on our street. He came running back to the spot he stands in for the bus to arrive and off they went. When he came home from school, I wasn’t sure if he would still want to go bowling but as soon as he got off the bus, he immediately asked to go. We were going with our friends and he couldn’t wait to meet them. He ate a quick snack and we were out the door. I wasn’t sure how it would go because he doesn’t always want to do something after school even if he says he does want to go, but he had an amazing time and really enjoyed having our friends with us. As soon as we left he asked for his friend to come bowling again. Our night went quickly and he ate a lot once again, but this time it was later in the evening. I heard him in his bed reciting a Mickey Mouse Clubhouse episode as he was falling asleep. He did much better tonight with falling asleep. He only got up once. I’m thankful for a great day and even though there are moments when the rollercoaster ride is up and down I’m always thankful for his growth and mine as well. Cherish the moments, be brave in the days, and know that you are important. Smiles to all and donut daze!
All the days blend together and some feel like they repeat. I woke at two and started panicking that it was Sunday and we missed church. Clearly, I was dreaming but when do I ever sleep enough to dream? Thankfully I fell back asleep and woke up knowing it was Tuesday. The difference from morning to the afternoon was hard for Owen too. He woke and went right to the bathroom and then stood by the kitchen light with really no words until I initiated them. I finished getting my coffee and then we took off to the “white bed.” He was excited because he knew he had one of his therapy sessions today and he always loves going. We got ready and we went outside to wait for the bus. He wanted our neighbor to come out but she wasn’t coming out on his schedule. He ran back and forth to the stop sign and then she came out. He said his good mornings with her and then he ran after her car and waved as she drove away. A bunny came up at this point and he got really upset because it was in our yard where he didn’t think it should be. I told him that the bunny was allowed to be there and he told me no. Finally, the bunny hopped away and he went back to running to the stop sign. The bus came and off he went. When he came home from school he told me he wasn’t going to his therapy and he took off all his clothes and said no. He told me he wasn’t going because he had no school on Friday. I told him he could still go today. I let him have his snack and then tried again. Thankfully he put his clothes back on and off we went. He had a great session and then wanted to go by the depot but really it’s more about the blue house and the metal building. I still don’t know what he’s looking for but he loves it. We got home and the eating machine was eating again. He is in a growth spurt for sure. Sleep did not come easily for him because he was worried about not seeing his teacher on Friday. He got up at least six times and finally fell asleep asking about her. I’m thankful for the progress he’s making even on these rollercoastery days. Rejoice in your moments of victory and know that you are amazing. Smiles to all and donut daze!
Some days feel like smooth sailing even when there is every bump possible in the road. There were a lot of them. However, Owen slept all through the night and even a little later in the morning. He came into the kitchen just in time for my coffee. “Lose a toofth,” he said to me before I could even say good morning. He always says tooth with more of an F sound. He’s very concerned about his teeth and when they are falling out and growing in. His dentist explained he is probably more sensitive to every single move his teeth make and can feel it all. He wants me to constantly look in his mouth but he won’t open his mouth wide enough for me to look inside it. This goes back to body awareness and being able to associate opening his mouth with the request to open his mouth. When he looks in the mirror he is understanding how to open his mouth but he struggles with it when I say to him open your mouth. He will only open it a little sliver and stick his own finger in it. This is one of the reasons eating is so difficult for him. He is a sensory kiddo and loves certain textures of foods and others not so much. One of the things he loves to do is rub the food on his face or even in his toes. It takes a lot of effort to keep him concentrating on that way to eat. This morning as we were waiting for the bus he told me he wanted to run to the bridge flags. What he is referencing to is not that far away, yet he does not need to go to it by himself. I want him to know this is not an option for him to run away from me under any circumstance. I repeat to him often that he has to stay with mommy and have talked to him about safety. I got the call during the day that his vision therapy was canceled for today. I wasn’t sure how he was going to handle it but he did amazing when he came home from school. I told him as soon as we walked in the door that it had to be canceled and that we would see the doctor next Monday. I asked him if he wanted to go anywhere else and he said no “mommy dress.” This meant for me to change my clothes so that we would stay home. I watched him in amazement as he used one hand to move his milk to the other hand and then close the refrigerator door. It always makes me happy when he does things like this. The goal is to teach life skills and this is one of them. As he sat eating dinner, he went through wanting to wear all he had his glasses. He took off his clear glasses and asked for his yellow pair. I think it is because he doesn’t have a prescription in the yellow pair and with him being able to see close up but not far away. I think this makes a difference for the pair of glasses he requests. His appetite was huge tonight. He ate his snack when he came home and then he ate another snack. For dinner, he requested waffles he ate those and then he requested shrimp. He ate it all. Bathtime seems to be the trend lately and he was happy to have his bath. Night time came quickly and he was asleep only getting out of bed one time. Find your hope and know that tomorrow is a brand new day. Smiles to all and donut daze!
Some days all I’ve got are emotions. How many rivers can you cry in one day I wonder? Owen woke after six. To say I was overjoyed would be an overstatement. He was in a good mood and quickly went to the bathroom. He wanted his tablet right away but thankfully he talked to me for a few minutes first. What did you do yesterday, I asked. “Easter egg hunt at church,” he said. The words, the glorious words he spoke. I said, “what else did you do yesterday?” He started listing more things bowling, slides, and bouncing. It was amazing to hear all the connections to what he did. It was seamless and rolled right off his tongue. I asked him about the Spider-Man on his hand. There wasn’t a connection with it or he was ready to play with his tablet but I was so thrilled with everything he had said. He saw me stretching when I was fixing his waffles and he came to stretch with me. He doesn’t understand how he moves his arms so he moved them like he was taught for a song he sings. He couldn’t hold still to do the stretches but for him to initiate the interaction was amazing. The repeating and the screaming were over the top today. The screams travel through my veins. I try not to let them rattle me but if I let him scream they turn into meltdowns. If I keep him from having meltdowns I want to have my own. “One and done” I kept saying to him today. I was hoping that maybe he would understand that if we talk about something once then we don’t have to keep talking about it. He will stand there expecting me to repeat something over and over again with him. How do you learn to ignore words that you so desperately wanted but I also know that I have to find a way to get him to move forward and not continuously repeat the same words and questions. My instinct is to answer him because that’s what you do when someone talks to you but are my actions and reactions part of the repeating process? I overthink it all. The hardest part is finding the solution. And everybody has ideas or no ideas. We try something and I think it works and here we are years later back to having meltdowns over bananas that have been thrown away days earlier. How can you help a behavior when the meltdown occurs from an object that isn’t even part of the equation? “Blue pants we don’t talk about it,” Owen said as his hand was almost touching the legs of someone else. How do I teach him about this behavior? How do I make the world understand he can’t stop himself? How do I protect him from those that don’t understand? Love, compassion, and understanding. Hope, prayers, and blessings. Some days feel thick with emotions. That was today. Owen has grown so much and I know that every day is a stepping stone for tomorrow. Through your challenges, your victories will shine brighter. Smiles to all and donut daze!
Bounce bounce bounce kick splash kick splash ewwww eeeee nooo shhhh and the sounds continue. I can only imagine what all the sounds mean to him. He slept until five and I really didn’t try to convince him to sleep longer. We had a big day ahead or so I hoped. The rain kept falling and I was hoping it would stop in time to have the Easter egg hunt at church and thankfully it did. The morning went quickly and he was excited to go to “church church church.” He sang it out in almost a sing-song manner. His allergies were still bothering him I could tell but thankfully no other signs. I wanted to get him to the egg hunt early so the crowds wouldn’t get to him and he could see where everything was. The rain had stopped by the time we left for church but I could tell each raindrop he touched meant something to him. When he opened the car door he pulled his hand away almost like it was hot. He then looked at his hand like he was examining the effects the rain had on it. He had told me he wanted to take Easter robot BeatBo to the egg hunt and bowling but he did not want to take him once it was time to go. He had a great time. I wasn’t sure how long he would last but I was thrilled with everything he wanted to do. He got a Spider-Man symbol painted on his hand. I wanted to see how he would react and after the initial shock, he left it without even looking at it. We walked around for a few minutes and then it was time for the bounce houses and slides. He loved the slide. He didn’t want to come down at first but he loved them. When he went through the inflatable obstacle course he didn’t quite understand it all but he was able to accomplish it. At that point, it was time for the egg hunt and he picked up many and put them in the bag. I asked him if he wanted to stay or go bowling. They have tournaments so if we don’t go at a certain time it is hard to get a lane. He wanted to go and I was glad because he was getting overwhelmed or maybe it was me. We got to the bowling alley and he absolutely had a great time. I can see that it won’t be much longer and he will be throwing the ball on his own. We got home and he wanted to take a bath. My question always is why is there not a sitting area in my bathroom. Plus bathrooms should always be waterproof. He once again ate everything I put in front of him and asked for more. I am trying to work on how he washes his hands. For a child that likes water as much as he does it’s hard. He will not wash off the soap. He won’t even put his hands in the water. We will keep at it and try other ways. He was ready for his day tomorrow and it only took three times for him to stay in bed. Even with our challenges today was an amazing day. Never give up on the hope for tomorrow. Smiles to all and donut daze!
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AuthorI'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart. Archives
May 2024
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