Some days it feels like the rollercoaster goes up and down and that’s about it. Other days it feels like it is whipping you back and forth as it goes up and down and I can only imagine the rollercoastery moments Owen has when his routine is changed for something like a holiday. He woke up concerned about his days ahead. Each day off is time to be concerned about according to his thoughts. By the time we got dressed and went outside to wait for the bus, he asked me easily fifty times what was going to happen tomorrow. It’s so hard when all he wants to do is repeat the same question or statement. All the rules of how to address this have been thrown out the window and I’m looking for a new rules book. I know it is all so hard for him to process. He was happy to see the bus and he knew I was picking him up. He is working through his words and phrases. He realized that I would say to him “I’m going bye-bye” when I leave him with my mom on Saturdays. He wants to make sure he has that time with her. When he got ready to get on the bus he looked at me and said, “I’m going bye-bye.” I could tell he felt a victory in his words. On the way to his therapy, he requested we stop at the park to find mud that I told him he could only look at since we were on our way to therapy. Luckily it wasn’t on the ground and the slides were only a little wet. He was able to climb a ladder and continue to the platform that he couldn’t do before. His first attempt took a lot longer and he kept yelling for help but on the second attempt, he went right to it. He’s come so far though. On our way to therapy, he talked completely about what was happening the next few days. He is focusing on how to get through them and kept bringing up Friday’s “breakfast with grandma” and Saturday’s “mommy goes bye-bye.” His speech therapist said he read more sentences than she could have even imagined and he was focused on making sure he did the end sounds of his words. We got home and the focus was back to the weekend. I told him we had a party to go to on Saturday and he said, “No party” but I think as the days go on I will be able to convince him to go. The night was filled with constant talk about the days ahead. Sometimes I feel like my brain is stuck like a record player playing the same second over and over again. I don’t always know how to get Owen to move forward but we will get there together. I’m thankful for his words and the progress he has made. Each day is a gift and the surprise waiting inside is well worth the journey to see what it is. Be the change you want to see in the world and let your heart shine. Smiles to all and donut daze!
0 Comments
Some days Owen’s hair is sticking straight up when he wakes up and that is how it goes for the day. With sensory issues sometimes it’s hard for him to let me brush his hair. And if I put water on it, that brings a whole different set of emotions. He was excited to get dressed and wanted to get out to wait for the bus even though he still had almost an hour. He woke a little bit early but sat with his tablet very calmly asking about why he wasn’t going to school on Friday. This continued until we got dressed. He was singing in Spanish this morning. He was also making sure his Thursday was intact and stating that he definitely wants to see his grandma on Friday with a “we’ll have to wait and see” added because I keep telling him I’m not sure if we’re going to be able to go to breakfast with grandma. He has Friday off for the holiday and he wants to see his grandma but I want him to understand that it’s not set in stone that we will actually get to see her. And if we do get to see her, he may not get to go to her house. I have to make sure that each holiday is not something that continues with the same expectations every time. We went out to wait for the bus, and he kept hugging my head. This is the type of hug he uses to get my attention because he wanted to answer about going to see Grandma on Friday. When the bus turned the corner the boy looked like he had won the lottery and was jumping up and down, throwing his hands up. He got on the bus and he started talking to the bus aide as they drove away. I am so thankful for their connection. When he came home from school, he did not want to go anywhere. We came inside and he immediately changed his clothes. He wanted his snack and he wanted to talk about seeing his grandma on Friday. This was the main topic of conversation for the rest of the night. He would come running to me and would say “No school on Friday.” he gets very upset when there’s a holiday or something that changes his routine. Bedtime came and it was the same question what will he be doing on Friday? I tried to get him to concentrate on one day at a time, but this still upsets him. I keep thinking about Thanksgiving and how many days off he will have. I try not to dwell on these moments, but I know how hard it is on him when he’s not in his routine. He fell asleep quickly and I pray he sleeps all night long. I’m thankful for his growth and that big beautiful smile. Live life forward and let yesterday go. Smiles to all and donut daze!
The journey is not always easy to explain but the love sure is. Owen was sleepy this morning. He didn’t want to get out of bed so I didn’t push it. When he was ready there was no “good morning Mommy” it was food talk. “Waffles milk cereal please,” he said without skipping a beat he went on “No adventure stay home.” He hadn’t even gone to the bathroom and he was focusing on his whole day ahead. He knew that after school we were going on another giving thanks adventure. I have been preparing him for the day. I’m finding that if I talk to him about the days ahead it seems like he is embracing them a little differently but it is also giving him time to think through all the scenarios. It also gives me more time to overthink everything. We got ready for school and we went out to wait for the bus. He was extremely happy as we were standing there. He talked to me about the bus and the directions he was going to go. He walked up to me and he gave me a huge hug. I love it when he gives me big hugs. There are times when he tries to hug me but it’s only because he wants to pull my hair and there are times like this morning when he gave me one of the biggest hugs and I can feel it from his heart. He was doing a lot of jumping and running back-and-forth, and sometimes that’s all his body can do to process what is going on around him. I asked him if he could jump forward for me so I could see how far he could go. This is a request that I’ve made so many times over the years, and he hasn’t been able to understand what I was requesting or able to process that he can jump forward and not just in place. He immediately jumped for me. To see him jump a whole foot forward is incredible. It may have even been closer to two. It wasn’t long and the bus came around the corner. Off he went to school. When he came home he got off the bus told me “no adventure" and was on the porch before the bus even left. His mind was changed before we even walked in the door but it was overwhelming for him. It’s a Tuesday. Tuesdays, Wednesdays, and even Fridays are for staying home but I’m trying to help him realize we can go do other things during the week. Some of those things can be for fun but I also want him to understand that we have to randomly do things during the week even if we don’t want to. I know it is hard to make ourselves go places. It is even for me but we still need to do it. He ate a snack and we got ready to go. He kept telling me that we would go, then we would come home, and I needed to put on a dress. He has to keep it all in order. We left a few minutes early so we could go to a couple of his requested places and then headed to the bus garage. He was so excited to see his people. We followed them to the break room and he was happy. He’s starting to get the hang of these adventures. He didn’t want to leave. After we had been there over thirty minutes I told him it was time to go. He said, “Twenty-five more minutes.” I laughed and thought oh how the times have changed. Not only did he want to stay but he realized that twenty-five minutes was a lot longer than five. It was a great experience for him but in the car when I asked him if he wanted to do any more giving thanks adventures he quickly said, “No.” I said, “Please” and he said, “No.” I expected that though and maybe we will try again next week. He definitely wants to go nowhere tomorrow and I completely understand that. Today we accomplished growth and that’s what matters. Tomorrow we can accomplish relaxation. We need that too. Each day is about the victory in hand, not the race that’s not finished. Make today matter. Smiles to all and donut daze!
Time changes and yet stays the same. The one thing I focus on is the one thing I probably shouldn’t focus on and that’s how to handle all the things I need to focus on. Of course, there are also the things that I overthink about too. I was thankful Owen slept all night. I think I woke up maybe a few times shy of a thousand. Every noise is still a noise to me and I’m extra sensitive to them because I pray they don’t wake him. He slept until after five. It always takes me days to figure out if I should be tired or extra tired for the time change. Owen doesn’t understand about the time change and how it affects our lives. He was excited to get his day started and wanted to make sure I didn’t forget he was going to therapy. He told me that he was going to play the ukulele when he went and sing songs. I know he loves music therapy. I asked him about Sadie the Rooster and he started singing “Sadie rooster.” He asked for waffles before he continued singing his song. We got ready for school and went to wait for the bus. He talked about us going on another adventure tomorrow. It is a process for him to go. Anything out of routine even if it is for fun is out of routine. Off he went to school talking about our adventures we had and the ones to come. When I picked him he was excited about going to therapy. I asked his music therapist if she knew his new song and she hadn’t heard it either. The mystery will be solved one day. He did great at music therapy and then we came home to get a snack before his vision therapy. He kept asking when we were leaving. He didn’t want to miss his therapy again. We got ready and left early so we would make it in plenty of time even if there was traffic again. He was giddy to see his doctor. He did most of the exercises she requested but he was more into being there with her. He completely loves his time with her. When we had come home from his music therapy he told me he wanted Chick-fil-A and Burger King for dinner. I told him that he could have one but not both. He went back and forth but ultimately chose to go to Burger King. I don’t want to take him to get food every day but I also love that he requests food and is making choices so I think there are times when we have to bend the rules. Our night seemed to fly by. He ate most of his food and we played some but talked even more about the days ahead. He wanted to make sure that after our adventure tomorrow, we would come home and I would put on my dress but then he asked if he could go to see burger boy tomorrow. I told him that if he did the adventure with me then we could go see burger boy. I was excited that he wanted to go on this detour. We will see how tomorrow goes but I’m happy with his suggestion. He fell asleep talking about our adventure tomorrow and I’m thankful for another good day. Find your strength, push forward, and know that you can change the world with your smile. Smiles to all and donut daze!
Was it the old three o’clock, the new three, was it two, was it four? I don’t know but we were awake and we still had at least six hours until we had to get ready for church. And that’s what Owen was concerned about. Church was truly on his mind and he wanted to know when we were going. I answered “Five hours” but I think it was six. My time changing math skills were not great at three o’clock in the morning. He checked every few minutes to find out when we were going. Also, he was talking about more adventures that he wanted to go on and this was music to my ears. I could tell he was after a new mystery. He asked me for every video he could find that would take him from one city to the next near us. I wonder if it is part of our next adventure or one he wants to create. He talks about places I’ve never heard of before but it is somehow connected to a certain place that might mean something to him. He mixed his requests for cities with languages. “Disney Junior in Polish,” he said after just watching a car drive over a bridge near his school. We got ready for church and headed out the door. He was ready for church and then he wanted to find mud. I told him there was most likely not going to be any mud but he still wanted to look. He did great at church and then off we went to the park. There was no mud but he enjoyed swinging today. When we left there he asked to go to Burger King to get a cheeseburger, chicken nuggets, and apple juice. I had my little rejoicing moment as soon as he said it. I told him that they didn’t always have chocolate milk there and he said, “apple juice.” I quickly said you want apple juice and his “yes” rang in. I don’t often get him to drink something else but I talked to his teacher about it and they were going to offer other drinks first for him and it’s working. I’m fine with him having chocolate milk since it really is the only sweet thing he likes but I want him to drink more water that excludes bath water so apple juice is a huge start for us. Owen told me the blue shark and comb were gone from his bath. The blue shark broke a year or so ago and the comb I took out of the bath recently because I was afraid he was going to poke his eye with it the way he played with it. He however never forgets a thing and could probably tell me every toy he has ever had in the bath. The rest of the night was filled with singing about Sadie the Rooster, painting, eating, and playing. I’m thankful for a good day and big steps to promoting more independence with his seatbelt and closing his own door. Each step forward is a step. Follow your dreams because it is good for your heart. Smiles to all and donut daze!
A Friday night success story. We slept to right about five. Owen woke with a mission but it was his expected mission. He is very happy and ready to get to his grandma’s. He talked to me about his adventure and I told him we were going to go on more. He started singing again about Sadie the Rooster not long after he woke up. I’m going to ask his music therapist when he goes on Monday if she knows the song. He was slow to eat breakfast, but it wasn’t long before I realized why. He brought me another tooth and was ready for the tooth fairy immediately. He wanted another lollipop and no coins from the tooth fairy. This lollipop was not as impressive as the other. It only got two licks compared to the other one that got more. He asked his tablet for “adventures in wonderland see our friends.” More adventures await and I think he is preparing himself for the adventures. We got dressed to go to Grandma's and we went out to the car. Each time he gets in the car I remind him that he needs to put on his seatbelt before we can go. He put on his seatbelt and then he closed the door. This is such an incredible progress. I keep fidget toys in the car because some days it’s hard for him while we’re driving. I asked him which one he wanted and he said, “a-lan” which is the way he says “alien.” As soon as we entered one of the intersections, that is always been a problem for him he said, “rain.” I was taken aback at first because he hadn’t said it in a while. He continued, “It’s raining now.” I asked him is it raining and he said, “No.” Everything cycles back around. We got to my mom’s and off he ran to make roast marshmallows. He doesn’t like to eat them, but he likes to make them. He wanted her to drive him around town and this time they went on quite the adventure. He told her he wanted to go to the church with the red flag. It ended up being a Methodist Church way up the hill and the red flag was on their sign. He used to drive by this all the time with the bus and I’m not sure if he still goes that way. It’s amazing how many places he remembers or knows how to get to. He stayed there for several hours, and then I went and picked him up. The drive home was not as calm as the drive there. He was upset because we had to stop at a red light and this through the rest of the drive off. We got home but from there he wouldn’t get out of the car. It took about fifteen minutes to get him out of the car. I tried to not get too excited about all his moments on the way home. He said, “One more minute” after shutting the door five or six times, and then he got out. The rest of the night was calm and he ate lots of dinner. He’s excited about more adventures and he can’t wait to go to church tomorrow. It was a good day even through the rollercoastery moments. Before bed, he kept running to me and asking when we were going to go on our next adventure. I told him we were going to try to go on Tuesday to see the other bus garage. He fell asleep quickly and I know he has church on his mind. I’m praying he sleeps all night. Find your strength because you know it’s there and let that be your guide to your victories. Smiles to all and donut daze!
A little after five Owen was beside me with a mix of words. “Tablet then adventure then a dress,” he said. I said, “Good morning Owen how are you,” running all my words together with him interrupting before I finished, which I knew he would. “Good morning Mommy I’m fine adventure then home then a dress,” came his reply. Friday nights are supposed to be home preparing for his Saturdays. And Saturdays seem to be full of mud anymore. Oh, how the times are the same yet changed so much. I know it was a lot to ask of Owen to do something on a Friday night but we have to start the process of change and adapting to when something randomly comes up. Routine would be amazing if we could keep it all the time but that’s not how this happens. Before I could suggest that he go to the bathroom he asked for “waffles and chocolate milk adventure then home then a dress.” A dress means to him that I am in my nightclothes and that means we can’t go anywhere else. I told him to go to the bathroom and then I would fix him some breakfast after I went. By the time I walked to the bathroom, he still hadn’t gone because he was sitting on the vent. He loves it when winter comes because he wants to sit on the vents. I have found nothing that stops this moving train. I even attach objects to the vents and he pulls them out of the floor which leads to more problems. The next house will have no floor vents. He ate the one waffle I made him and most of his cereal before he asked for “another waffle please.” I got dressed and put “blue pants” on both of us. I didn’t want this to be his focus today when we were going on our adventure. We went outside to wait for the bus and off he went. I was wondering if our adventure would really happen. I was hoping and praying but routine is routine. One change can cause the ripple effect and that can change our days too. He is still concerned about this coming Monday since we didn’t get to go to his vision therapy appointment because of the traffic and when your child does not forget a thing there’s always that. I was ready for whatever the day brought us. He got off the bus and he said, “Adventure.” But it didn’t stop there. He went on “no adventure” and before anything else could happen I said, “Are you excited about your adventure we are going to eat a snack and then go keep your shoes on and it won’t be long” once again running all my words together. He went back through his list “adventure then home then a dress.” I said yes and the shoes stayed on. He didn’t take them off. This was progress. As planned we were out the door not too much after he finished his snack. He said, “It’s a giving thanks adventure” in the car and wanted to make sure we were going home afterward. We got to the bus garage and he was excited to see people and the buses but it wasn’t long before he was ready to go. It felt like a victory for me and it was nice to talk to people. It was good though for him to see that we could go someplace and still be able to get back home to get ready for his Saturday. I’m truly thankful for the bus drivers and all the support staff because I know how much they all work so hard to help my son. As soon as we left he started talking about the railroad tracks and the depot that are right near where we were. We took a little detour for him to see them and then he got back on his request to be home. The night went quickly but he was anxious about tomorrow. He got out of bed several times to make sure he was going to see his grandma tomorrow. I pray that he sleeps tonight. I told him we were going on more giving thanks adventures next week so hopefully he will be more prepared. I’m thankful for his growth and for the great day we had. Tomorrow is a brand new day. Rejoice and be glad in it. Smiles to all and donut daze!
I woke early and so did Owen. There was so much noise near us I’m sure it woke us both up. He at least slept until after five so it wasn’t too early for our day. He was excited when he came to me. He told me about losing his tooth yesterday and it was “therapy therapy therapy” day. I’m so thankful for how much he loves going and the support he gets from his doctors and therapist. I’ve always made sure he understands that they are here to help us. I didn’t want him to be scared of going to a doctor’s appointment or other type of appointments. He came to sit with me in the “white bed” under the blanket. It always cracks me up when he is covered from his head to almost his toes. Somehow his feet always sneak out from under the blanket. We got dressed and I put him in “tan pants.” He had asked for blue but I said how about we wear tan pants today and he went along with it. When I picked him up for therapy his teacher said he was doing good at school but she could tell his excitement was down because Halloween is over. I told her that I was trying to keep the excitement going by finding activities and ways to give thanks in November. She also told me that everyone told him he looked nice today in his khaki pants. He used several phrases to describe his pants after that. All of this will help the process of getting him used to different clothing that everyone wears. We stopped at the park before we went to his therapy. He climbed another ladder that he hadn’t been able to do before and it’s amazing to watch his progress. He did great at therapy and he is making huge strides with the exercises they are working on with him. I told him that tomorrow after school we are going on an adventure to see people he is thankful for. He said, “Math adventure” so I told him it was a “giving thanks math adventure.” We are going to the bus garage when he gets home so we can see where the “bus sleeps.” He then started telling me we were going on “an adventure in Wonderland.” He has watched the Mickey Mouse Clubhouse and they go on an adventure so he associates it with that. He was very excited about going tomorrow but he wanted to go over all the details many times. Friday nights are for staying at home and waiting for Saturdays with grandma so this is hard for him to process that we will be going somewhere tomorrow night. I hope that he can sleep tonight and have a fun adventure tomorrow. Here’s to giving thanks and having a great day. Count each step of your progress and let that be your guide to your victory. Smiles to all and donut daze!
November seems like it is a time for reflection. Owen woke up talking about “Halloween done” and “November now.” The snow boot request was quickly spoken and he wanted to know when we would get snow. He quickly rushed me to the “white bed” and turned out all the lights. I’m surprised he ever lets me keep them on but he always wants his bedside table lamp on. It’s interesting over the years how lights have become a rollercoaster ride for us. The lights could only be on in the bedrooms at one point, then it was only the bathroom, then he screamed at all of them, at one point I had to put paper over the window on the door to hide the light, and now it depends on what time of day for which lights can be on but always his bedroom light. I’m sure I’m forgetting a few of the rules and scenarios as well. We got ready and we stood outside waiting for the bus. I got more of my Spanish lesson this morning when he sang again. He was excited about his bus coming around the corner and off he went. I’m trying to find ways for us to do more activities in November. I want him to still have fun like he did in October but I know it will be different for him since he isn’t dressing up. It’s hard to convince him to go places when it isn’t his routine days. I’m hoping that I can work with him on activities that will show him that this is the month to be thankful. I stood outside waiting for Owen’s bus to bring him home and I saw a leaf fall from our tree. Last year he was picking leaves off the ground and then putting them back next to our tree if they matched. He hasn’t done that yet this year. I wonder if this is something he is still interested in or if he has moved on from it. When he came home I thought for a few minutes we might go for a walk or do something else but I told him we needed to put his backpack away and I had to lock the house. Once we got inside he didn’t want to go anywhere though. He told me he was going to take his shoes off and that was that. Owen lost his tooth at school and tonight the tooth fairy came. He put the tooth under his pillow when he was heading to the bath. I quickly did the old switcharoo and when he got out of the bath he ran to his pillow. He got a lollipop he yelled. He said, “the tooth fairy brought me a lollipop.” I told him he had to get dressed first and then he could have it. He wrinkled his nose after each lick. He had more of it than any he had eaten before. This one was a caramel apple one so maybe it was more of a flavor he liked. He didn’t want coins until after the tooth fairy came and then he asked about his pirate coins. I don’t leave it overnight because that isn’t something he understands yet and this helps him work through all of the steps. Plus this keeps him from hiding the tooth someplace else I can’t find. He fell asleep singing a song about a rooster named Sadie. There is a mystery to be solved with that one but I’ll have to get more of the words before I can even begin to figure it out. I’m thankful for his smile and the laughter we shared today. Each day is a gift and there is a memory to be made. Smiles to all and donut daze!
|
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
Categories |