I miss the routine of school for my sweet baby O. Owen was up by five wanting me to find Christmas videos for him. He loves Christmas videos but more importantly he loves to ask me about Christmas videos. The day felt jam packed before we even began. He didn’t want to go anywhere so I told him that if we didn’t go someplace today that we would have to go someplace tomorrow. I want to make sure that he is understanding that we don’t always have to stay home when we don’t have something routine scheduled. I tried to get him to go bowling, but he did not want to go anywhere else so I made sure he understood that we would go someplace tomorrow. I can tell you I already feel like sitting tomorrow and not going anywhere but I have to keep pushing forward. Some days it feels so hard to convince him to go anywhere and that just leads to other emotions for both of us. Even though we didn’t go anywhere, it was a very full day and a very emotional day. I am always amazed at what he can find on his tablet and today was no exception. He found a game that he plays with one of his therapists and he loves it. The game has dice and he keeps telling me that he wants to eat a dice. This game went away for now. He generally does not put things in his mouth until I assume he will generally not put something in his mouth that he’s not supposed to. He ate a big breakfast and a good size lunch. Then he sat next to me on the couch under a blanket watching a video about losing teeth. He is fascinated with all dentist videos. I kept telling him to change it because I am not a fan of all dentist videos. A few minutes later he took the blanket off his head and he had his hand in his mouth. He pulled it out with blood on it. He has handled all of his other baby teeth very calmly, but this one not so much. At first, I didn’t realize he lost it so we went to the bathroom to clean up and I looked in his mouth. It was gone. I asked him to show me where it was and he refused. I move the blanket that he had been under and I still couldn’t find it. Then I realized he likes to hide things under pillows. I picked up the pillow and it was there. I tried to take it from underneath the pillow and he got very upset. I told him that I wanted to put it in a bag so we could give it to the pirate tooth fairy. This just upset him more. And he took the tooth and ran off to the bedroom to hide it under his pillow. He still didn’t want the tooth fairy to come and take it from him or give him anything for it. He kept yelling, “no pirate tooth fairy today.” Within a few minutes, though he was calm enough and it no longer bothered him. I didn’t want to attempt to find the pirate tooth fairy because I didn’t want him to get upset again. I might ask him tomorrow if he wants the tooth fairy to come but he was pretty adamant about it. He loves maps. I decided to show him maps on his tablet and let him see how he could find where he likes to go. I showed him our church and then the windows. Before I could show him anything else he said, “give Owen a chance Owen’s turn.” He loved it. He played with it for quite some time and kept yelling about where he was driving on the little streets and what he was looking at. Once again, bedtime was not what he wanted, but within a few minutes, he was fast asleep. I’m thankful for a good day even though we had a few rollercoastery in moments. I told him we could go bowling tomorrow or go ride his bike. We shall see what he chooses to do. Through all of these moments today, I saw incredible growth. Be inspired, be motivated, and be happy. Smiles to all and donut daze!
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Sleep evades me a lot of nights but thankfully Owen slept until almost six o’clock in the morning. He knew we were meeting with our friends this morning but thankfully his excitement for the day did not wake him up too early. We had a great morning. He was a little confused about why we were going to the park with our friends but I’m hoping by doing different activities on different days will help him to understand we can go places even on days that are not routine or add new things to our routine. Our friend was going to watch Owen while I went to an appointment. It was a great opportunity for him to go play with other kids. Playtime is not something he always understands how to do without directions. It took years for him to understand swinging or going down a slide on his own. He has come so far with this and I’m thankful. I had thought about taking him bowling but it was too much for him to handle afterwards. I also tried to take him to some different buildings I knew he would like because he has been watching them on YouTube videos but he was in sensory overload by the time we got there and he wanted to be home so that he could wait to go to his vision therapy appointment. There are only so many new things he can process in a day. I try to take him to things I know he will love but it can also make it harder on him. I pray a lot for answers. We came home and ate lunch. The afternoon was quiet and gave him a chance to calm down. I asked him if he wanted to play a game with me before we left for his therapy and he said, “no.” His saying no has become something I look forward to. It’s not that I always want the “no” answer but I love that he is now fully invested in his answers. When he says no it is him making a choice and that is what I want for him. It’s one more step towards independence. We went to his therapy and he had a great session. He listened well and did the exercises for the most part. When we came home he ate a big dinner and the night went fast. He kept telling me he didn’t want to go to bed but he was out extremely fast. We have several activities we might go do tomorrow but I also want him to have a day to do what he wants so we will see how motivated I am as well. I like to sit sometimes too. I’m thankful for his growth and all that he is accomplishing. Each day is a step forward. Even when they feel like it took a lot to get there count every one of those steps as your victory. Smiles to all and donut daze!
I stood in church not really knowing how I was standing. Some days the emotions feel like the weight sitting on my shoulders is heavier than the weight I carry in my heart. The words of the song washed over me and it was like the weight was lifted and the words were holding me up. I didn’t sleep much at all last night. I guess I kept thinking Owen would wake up. I knew he generally sleeps later on Sundays but I still thought I heard him numerous times. He slept until after six and I was thankful. We had a great morning. We were going to church early so that I could go to one of the group classes. We got out to the car and it wouldn’t start. This upset Owen greatly. The screaming and crying started instantly. I knew it would. He couldn’t process it. I had service done on my car recently and they upgraded several features and had a few recalls. At first, I thought maybe my key wasn’t working properly so we had to go inside to get my other one. This upset him even more but he walked inside with me. The emotions from him go straight to my heart because I understand it’s hard for him to understand what is happening. We went back to the car and I sat for a minute, knowing there had to be a solution. The steering wheel was extremely tight. I figured it had to do with the antitheft device. I had to move my steering wheel and key at the same time plus do the Hokey Pokey while Owen was screaming. It worked and we were off. The tumbleweeds already started to tumble. He did great once we left and we got to church but it added a little momentum to the day. Then when we left church he thought too many people wanted to talk to us and that started our next tumbleweed. The trip home was his emotions amplified. He talked to me about everything he wanted to do and everything that was happening around him but it was making him very anxious. His words sometimes in circles and sometimes as clear as day about nothing that was happening right that moment but completely fit. “Yes it’s a great idea,” he said and I wondered where that gem came from. He talked to me about the light that is broken. For months every time I sat at the light with him, I thought he meant it was broken because we were having to sit at it but then one day I realized the actual case around the light was broken. This upsets him greatly and I can’t even imagine the emotions he goes through because of it. The rest of the night I tried to help him stay calm. The calmer I can keep him the more I get to hear his beautiful laughter. We played games and ate dinner. Sleep happened fast and I pray he sleeps all night. I’m thankful for his smile that lights up my world. Our emotions create our own stories but those stories are the beautiful melody of life even when they feel out of tune they still need to be sung. Smiles to all and donut daze!
Oh Saturday morning, why did I think you would be different since we woke up so early yesterday? It was a little later I suppose for the wake-up call but four o’clock in the morning truly is no different than three or so my body told me. I was hoping for a later start but excitement won and Owen was ready to get to his grandma’s house. The good news he was happy. He was also very aware that he was going to grandma’s house and he asked about her every five seconds or less. Sometimes it is a little more drawn out when he converts “grandma” into approximately fifteen syllables and speaks with his Southern accent. The repetitive behaviors are not something I know how to help. One day I will stumble upon the right person, place, or thing that will have the knowledge to help me understand his need for the behavior. There are so many ways we have tried but his mind retains all the information and can change directions in a heartbeat and I have a hard time keeping up. I do believe my boy has outsmarted the system and the strategies I have tried. He also doesn’t forget words or phrases he heard years ago, not to mention clothes people wore, or places he has gone. He was saying “grandma” an inch from my nose and he said, “we are done discussing it.” I’m not sure when this became one of his catchphrases or where he heard it from but here we are. I could have easily said it or he could have heard it on a video. It wasn’t long and I took him to his grandma. He had a great time with her and when I picked him up I asked him if he wanted to go do anything or see anything on the way home. He said, “no.” I tried to explain to him that he said no but I knew he wanted to do things. He still said no and ran off. When we walked out the door he said, “show me by the windows please” and I explained to him that we were going straight home. I want him to understand that we have to communicate with each other and he had already told me he wanted to go nowhere on the way home. In reality, it was that he wanted to get back to the computer and I was distracting him. I went a different way home that he didn’t necessarily approve of but I stuck with it. I think it taught me a lesson. Not sure what I learned but I know I learned something. And I will keep working with him to understand we need to listen to each other. I love watching Owen point. I honestly don’t know that I will ever tire of it because I waited so long for that goal. Pointing is something that took him years to master and now every single time he points I thank God for being able to see him succeed. His being able to point lets him share the world with others that he wants them to see. Celebrate those victories. Our day was full but my heart is fuller. Believe in yourself and the rest will follow. Smiles to all and donut daze!
When Owen knows he is going to see one of his favorite people he wants to make sure he doesn’t miss it. “Tablet tablet” I heard after he asked when he was going to see her about twenty times in a row. I was happy, very happy that he was happy except that it wasn’t even three o’clock in the morning. He still wasn’t processing our day but I was thankful he was happy. He didn’t understand when she was coming or what we were doing but he was excited. He was also anxious because having people at our house is hard for him. He has set rules in mind about where people should be and having someone here is hard for him because we are the ones that are supposed to be here. Even though he woke early he was very happy. He was also very concerned about timing and what he was missing but I focused on the happy part. He is definitely growing. He ate a huge breakfast and then for lunch, he requested waffles, four waffles to be precise. He finished those and requested chips. The waffles felt almost like second breakfast but it was hours in between because he woke up so early. He heard me listening to a video I made the other day of him riding his bike. He has a hard time hearing me or someone else he knows is a recorded voice. As I played it he came to stand next to me and he told me to “pause that.” At first, it didn’t dawn on me what he said but I explained that it was fine and it was when we were playing the other day. He said, “pause that” again. I stopped until he was out of earshot and finished listening. I didn’t want to cause a meltdown over it. Not much longer and our friend came. We talked about all kinds of things. It took Owen a while to process everything but he really did great. He read one of his books for her and played a couple of his instruments. Afterward, we went to the park and he enjoyed riding his bike. When we came home, we drove by all his favorite places and then told our friend goodbye. It was a great day and I was very proud of how he handled everything. He once again ate a huge dinner and then played on his tablet. Bedtime was quick, and he is ready for his Saturday. I hope that he sleeps all night and has a great day. His laughter and that beautiful smile is what makes my heart whole. Be inspired by the world around you and know that you can change the world with your smile. Smiles to all and donut daze!
These five o’clock starts are fine because it’s almost like Owen needs the quiet too. He goes from his bed to the bathroom and then picks up his tablet and sits on the couch. He didn’t turn his tablet up loud and played until I came into the kitchen. It feels like progress. I keep reminding myself to focus on the progress. It’s a very emotional journey. There are so many times I try not to rock the boat because I don’t want to hear the screams. I get that so much is overwhelming to him but it is hard trying to figure out how to help him grow but keep the screams at bay. When I try to suggest things he might want to do the screams get louder, unless they don’t. He can only process so much. Anything new is met with questions, concerns, and him generally saying no. One day at a time and we keep moving forward. He had a great morning and after lunch, we went on quite the adventure. We left a little early for his therapy but he had a shortened session. We went to our church so he could ride his bike. I gave him a couple of other choices but he wanted to go ride his bike. Well, he mostly wants to walk it now. Then he asked for a donut so we went to get him one before therapy and then he didn’t want to eat it. He did awesome at therapy though and listened to directions. He had to read the instructions and do the actions. He did it. When we left there I asked him if he wanted pizza. He said no and he wanted to go to the gas station only I have no clue which one it could be. He then asked us to go to multiple underpasses and for us to “turn right at the skeleton.” I think too many pirates for us. He wanted to drive by the air conditioner, the green stop sign, the little church with a face and smile, and then the windows. He then decided he did want to get a pizza. He asked if he could take his tablet and I said yes. I opened the car door and he said next time. He told me he didn’t want to go. I think it was hard for him to process since it was a new restaurant for him even though he loves their sign and has eaten their pizza, he just hasn’t gone inside. The adventure ended with us coming home but there is always next time. He is supposed to see one of his favorite people tomorrow but he always has a hard time when it isn’t in the order he thinks it should happen. We will take it one step at a time and get through it. He had a great day and through the screams and valleys, he soared to new heights and climbed those mountains. I’m thankful for the progress he’s made and the smiles he shared with me. My heart hears the melody and knows the song he sings. Positive words and positive actions equal a positive life. Make today matter. Smiles to all and donut daze!
The day felt quite busy. I suppose when you are awake at five there might have a few things going on. I once again heard laughter and talking before Owen came to me. I could tell he was happy. He knew we were going to one of his therapy sessions today and we were going bowling before the appointment. I’m thankful he is willing to go places. It can always be difficult during summer vacations. I put his list of things you were going to do on his board. I showed him his schedule board and it went from calm to chaotic in just a moment. I wish the schedule board was helping but so far it only upsets him. I let him set the pace of the morning so that he could do the activities he wanted to do before we set off for our day. He ate a lot of food this morning before he even had lunch. We got ready to go after he ate lunch and we left for the bowling alley. The closer we got I wanted to make sure he wanted to go bowling. There was a park nearby and I gave him the option and he wanted to still go bowling. We went inside and he had an absolutely fabulous time. He doesn’t generally use the ramp anymore, but he was so excited when he saw the ramp was by our lane. He wanted to use it. We played a quick game before his appointment and he really enjoyed it. As we were leaving I thought he might enjoy something from the concession stand so I got him some popcorn and then we left for his appointment. He was excited about the popcorn as well. We had a few minutes before his appointment so I decided to take him to the park right near the office. He always chooses the swings that have safety belts, or go over the head. As soon as he saw the swing, he went right to it. I struggled to even open the strap and then, for some reason they hung the swing high off the ground so he couldn’t even get right into the swing. The bar did not lock in place upward, so trying to get your child in the swing was virtually impossible, he was determined though to swing so I had to hold the bar up and try to lift him into the seat. Between the two of us, he was finally able to climb into the seat and he swung for a couple moments. We got to his appointment and he did amazing. He was very calm and interactive with both the therapist and the doctor. When we left there, he talked about going to the pizza place that he saw in the videos plus he still wants to talk to them about their sign not having a “nose on.” I told him that we could go tomorrow to get a pizza before or after his therapy. I am not sure if he will want to go but he keeps talking about it. He used to eat a lot of pizza, but now it seems to have slowed down however, he has been requesting it or again. Before I could even ask him what he wanted for dinner tonight he told me shrimp and he ate every bit of it. I can tell he is growing from how much he is eating, and I had to raise the seat on his bike yesterday. He was calm the rest of the night and did not want to look at his new schedule board. I’m going to continue to change the days and put on there what he is doing but I’m not gonna make a big deal about it until maybe he will get used to it. I’ve tried so many different ways over the years and nothing has worked for us but I hope at some point it will make it easier for him. Sleep came extremely quickly and he is ready for his next couple of days. I hope he sleeps through the night and will have a great day tomorrow. His laughter and his smile warm my heart and fill it with gladness. Each day is a gift. And those gifts should be filled with things you love. Smiles to all and donut daze!
I woke up hearing people talking or so I thought. I quickly realized it was Owen talking to his tablet. He was saying something and then laughing. I made a sound as I was getting up and he came a’running. Before I could even say anything he said, “say good morning mommy.” I responded, “good morning Owen.” He said, “need one hug.” I told him he could have as many as he wanted and off he ran laughing again. I love his laughter. I didn’t tell him he was going to see his grandma today. I didn’t want that to be his focus even though it was his focus. He kept talking about watching Mickey Mouse on 87 but that was his code for grandma’s house and also a babysitter’s house that he has never been to. Somehow he has it in his head that there is a babysitter that lives in a yellow house near us that will let him watch Mickey Mouse. The only thing I can think of is the bus must drop another child off there or it reminds him of something else. He is cycling back through his emotions and activities. He started asking Siri for all the words in different languages again. It was great to hear him talking to Siri and repeating the words. We got ready to go to the park and he kept asking for “87” over and over again. He rushed his way through riding his bike and he finally started saying “grandma” instead of “87.” I dropped him off and ran a few errands in between the rain. I got a new board to try to get him used to a schedule board. This has never gone over well but today I stood my ground, kinda, sorta, mostly as he was trying to erase it and screaming no. It had “Tuesday, dinner, and bedtime” on it. He wanted to add bath in between and then he said “tablet.” He was talking to me about it even though he was screaming about it. He wanted to hide the board but I made him leave it and he then tried to erase it again and again. I said, no. He tried while I started dinner and I said no again. It sat on the table and I told him after dinner he could erase it or mark it off whichever he preferred. It was progress but it also caused bedtime to be a little more intense for him. He got out of bed numerous times to try and hide it. I lost count of how many times he wanted to hide it before bed so it was definitely progress with a side of is it worth it thrown in. Schedules really stress him out and in turn, stress me out. One day I’ll find the middle ground that helps him through it. One day at a time and I will keep focusing on the progress. His laughter is the song in my head and the melody in my soul. Find your inspiration and let your heart soar. Smiles to all and donut daze!
Three, four, five in the morning truly all feel about the same. I heard Owen talking to himself in his bed around four. Maybe it was earlier, maybe that’s what woke me up, or my bladder trying to tell me we had enough sleep. Any which way we were up. That’s pretty much when the “Tuesday be with mommy tomorrow” chant started happening. My emotions were all over the map at this point. We can’t go two months of him not wanting to go anywhere. The emotional journey starts right there. Push us to go someplace and he has meltdowns. Stay home and it starts a trend I don’t know that we should do. It all feels like a rollercoaster ride. Trying to take your child to do something like go to the park or even driving around to look at stop signs because that’s what they love shouldn’t be so hard and emotional. I wish it didn’t cause him so much anxiety or stress to go places when he thinks he needs to prepare for his days ahead that he knows his routine will be there. I’m sure there are a million other scenarios running through his head but I can’t even begin to imagine them all. I get emotional, more emotional because I want to help him. I hear the fireworks all around me as I sit here writing. I wonder what he would think of them now. He asks about them every few months because he watches a video that shows them in the background, not understanding when they will set them off. I can’t mess up the sleep routine though. For years we’ve worked to get to this point. Some nights it’s still a struggle but at least most nights he is asleep pretty quickly. In general, he had a good day. His memory is amazing and reminds me of all the things we had to throw away. I go back and forth if I should let him know if I throw it away. He had a ball for a few months and now that feels like it was years ago and probably was. He sat on it and it popped. He will say “pop a ball throw it in the trash ”which leads to him saying random words knowing I will say we had to throw them away. “Gorilla tablet,” he said, talking about the cover he used to have on his tablet. He chewed through it so it broke. My black shoes he reminds me every couple of days about them. None of this really surprises me when he can tell someone what they wore two years ago when he met them one time. He’s ready for tomorrow. I told him we had to do something today or go someplace tomorrow. He said, “87 Mickey Mouse someplace different.” Technically that means he wants to go see his grandma because 87 is the channel he gets to watch Mickey Mouse on at her house. I didn’t tell him because he would be up all night but most likely he will go see his grandma tomorrow if he gets sleep tonight. I remind myself how far we’ve come and even in these days of struggles he is doing well. It’s a lot for him to process and I try to not let the sadness or emotions wash over me. Focus on the good stuff I tell myself all the time. Be brave in the moment of challenges and know that tomorrow’s victories will be that much sweeter. Smiles to all and donut daze!
Owen woke early but mouse quiet is what I’m going to call him, especially since he was watching Mickey Mouse on YouTube. I heard him but since he had gone to the bathroom and went right to his computer I thought I would let him have fun and maybe catch a few more moments of sleep. That’s not exactly how it works but pretend sleep is better than no sleep. Listening always for the squeals of my child is what I do. The happy, concerned, upset, anxious, frustrated, and every other type of squeal is what I listen for. My favorite though is the squeal of delight when he figures out something or finds exactly what he is looking for. I fixed his breakfast and while we were waiting for it to cook I got our yogurt ready. It’s the easiest way to give him our supplements. He loves the peach flavor but I only had strawberry left. He always says “achoo” when he is eating yogurt, especially when it’s not one of his favorite flavors. I try to give him his favorite foods but I also want him to understand that sometimes we have to try other foods and do other things that we may not always want to do. Food and routine roll around in my head like a ball in a pinball machine. Sometimes the answer for one is in the other. This is probably why I overthink everything. I have always been so careful in making sure Owen tries different foods and brands so that he doesn’t get stuck in one mode with food. But with routine, it’s always felt so much bigger because of the way he handles his emotions that are attached to it and the words that become part of his repetitive behaviors. I walk in circles hoping for answers and guidance to give my son the structure he needs but helping him learn to be flexible. The rain will be rolling through at different times in the next few days. As soon as he saw the grass and car were wet the squeals began. He didn’t want to open the car door because his hand would get wet. It amazes me and baffles me how he loves baths and being in the pool but washing his hands and rain can cause meltdowns and frustration for him. He did great at church and then we went to ride his bike. He wants to go in the opposite direction of the way the park is. I can’t have him go that way because of the church traffic though. He does not like the word “no” and who does? The good news is he quickly realized he was not going to get away with it and went to swing on the playground. When we left we got his requested lunch and headed home. We had a quiet afternoon. I told him that we were going to the park with our friends tomorrow. He said no and then I told him we were going to breakfast first but he thought with his grandma and I told him no with me. I don’t think he’s changed his mind to go to the park yet but I am going to try to get him to go. I don’t think he has to go someplace every day, but I do feel as though he should have places to go a couple of times a week. I have several other fun activities planned for him and hopefully, he will want to do some of them as the week moves forward. It didn’t take him long to fall asleep at all and I’m not far behind him. Even though there were a few hitches in our giddyup, Owen had a great day. He laughed when I started singing with his tablet, and I could tell it surprised him that I knew the song. I love his laughter, and it puts this song in my heart. Find your joy and share it with the world. Your joy will create sunshine in other places. 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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