I’m learning to breathe through the moments of life that are challenges as well as our victories. Two years ago I didn’t know how much my world would change. And now the memories flood through my life constantly. It still feels raw and all too real. I pray, I breathe, I repeat. Owen slept until six. He came to me so happy and I gave him a big ole hug. He giggled and squeezed me back. The smile that washed over his face is what can always wash away any of the grumpies I may have. I said, “Do you know how much I love you” and he said, “I know.” He was ready to go to church and he told me he wanted to see Santa and the fish. I told him we could go see Santa when he wanted to go again. He decided he wanted to have the leftover pizza for breakfast but I said how about we have it for lunch. He said, “Sausage dogs please two.” He told me he wanted a cookie hat and a cross hat choosing two he has learned about in an app he loves to play. Not only are his words becoming repetitive again but now he is going back through a lot of the games, toys, and videos he hasn’t played with in a while. He wanted to see the penguins in one of the Super Mario games. I’m still not sure which game it’s in. It is amazing how he makes all the connections to toys, videos, and even places he wants to see or has visited. He listened to all the steps I gave him to get dressed for church and we were out the door. We got out to the car and he wanted to tell me how to drive. It’s interesting to me how he chooses to give directions to each person a little differently. Sometimes or I suppose most times it feels like it is more about the reactions of the person he is talking to that he wants to feel. Plus a mix of his own emotions and needing confirmation of his agenda which goes back to the rules and routine. He enjoyed church and then we went to see Santa and the fish. He was so excited to see Santa. There wasn’t much of a crowd so Owen was able to see Santa right away. They took an amazing picture of them together and then he got to “lay down lay dooownnn” on the ground near him. This made him extremely happy and then he sat on Santa’s lap again. He wanted to unwrap what he thought was a present but it was just the block for him to step up on. We then walked to see the fish and he was so excited to see one of his favorite ones. He then wanted to “lay down” once again. He wasn’t really convinced it was time to go but I told him that we could come back another day. We came home and he ate his pizza for lunch. We had a great rest of our day. There were only a few bumpy moments but I’m thankful for all his progress. You never really know what a dream looks like until it comes true. Believe in the miracle yet to come. Smiles to all and donut daze!
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One of the hardest things is knowing your bladder is about to foil the start of the day. The scene opened with the suspense music. Dun dun dun, I got out of bed and I hoped that I wouldn’t step on the wrong board to make the whole house creak. It was after four but I seriously was hoping for a few more hours of sleep. I was not quiet as a mouse and we were up. Owen came around the corner and said, “Tablet” before I could get anything else out. He was excited to start his day. I could tell the growth was there though. He talked about going to grandma’s house but he knew he had a few more hours. He told me he wanted me to order a pizza for our lunch before he had even finished his breakfast. He was ready for his day. He also talked about Santa. When I became a mother the expectations were to give my child the world like my mom did for me. She always made the holidays fun, she made everything fun, except the things that no way could be fun. I wanted to make sure Owen had that. I wanted to be the house that all the kids would come to and have all the snacks and games they could possibly want. I wanted Christmas to be Christmasy and all the other special occasions to be special. The reality was not this. Presents weren’t supposed to be unwrapped once they were wrapped, furniture was not supposed to be moved for any type of decoration, and people were not supposed to be coming over because they may not be in the right spot at the right time. The rules become an overwhelming reality of what you have to get through to have your holiday moments. But when the rules all change and your son wants to wear a Santa hat to see Santa and ask him for a new hat you rejoice and you cry some happy tears. This is the growth, this is the awakening of my expectations. It wasn’t just about Owen standing next to Santa to get his picture taken, because he has done that before, it was about the fact that he wanted to go see Santa, he repeatedly asked, and he couldn’t wait to go. He kept his shoes on when he came home from school, he asked every few seconds when we were going, and he actually stood there with him and asked him for a new hat. You grieve for the coulda, woulda, shoulda beens but then there’s a moment that changes it all. Our journey is not always easy to explain but the love sure is. Owen couldn’t wait to see his grandma and did the countdown to when we would leave. He had a great day with her and they went out driving again. He looks up places on Google Earth and watches driving videos on YouTube. He was able to tell her how to get to the field where they have the Special Olympics. I am amazed at how many places he wants to go to and I’m thankful for his voice to express his emotions and choices. My mom told me when to order the pizza and I met them back at their house. He never wants to eat there but when we came home he ate it. He is very excited about church tomorrow. I told him that we could go see Santa again if he wanted to or we could do something else after church. We will see what he chooses to do. He got ready for bed and he put his pajamas on that he wanted to wear. He requested to wear socks because “they are hot.” Which I think meant because they keep his feet warm but I love that he knew what he wanted. Autism is as much about how I handle it as it is about Owen having it. The song in my heart is the joy from hearing my sweet baby O ask to see Santa. Let the good days show you that the hard days can be replaced. Joy is only one melody away. Smiles to all and donut daze!
To say Owen was excited about seeing Santa might be an understatement of all understatements. He couldn’t wait to see Santa and wear his hat so much so that he woke up at two making sure I knew we were going to see Santa tonight. I tried to convince him to go back to sleep but he was not having it. That was that we were awake and we were discussing Santa. As the morning wore on he wanted to make sure that he was going to school on the bus and then he was coming home on the bus. He is very specific and wants to make sure he has all the details. He asked for waffles and ate them while he discussed more about seeing Santa. He said something about the “sled” and quickly changed the word to “sleigh.” I told him I didn’t think Santa would have his sleigh there or any of his reindeer. He was very shocked by this but moved on. We got ready and went outside to wait for the bus. This was such a mixed moment for him. He was so excited about seeing Santa tonight but he was also not happy that he would not be in school next week. He went back and forth on his words and what his expectations were for tonight and the week ahead. “Two weeks,” he said quickly followed by “not this Monday the following Monday” repeating words he’s heard from all of us. He got on the bus and off he went. When he got home from school, I was wearing my Santa hat and I brought his Santa hat out to the bus. He put his on, but he didn’t want me to wear mine. We went inside and he started talking about going to see Santa and his music therapist. He couldn’t wait to get there. I told him that we were going to eat a snack and then we would go. I had to time it right for how much traffic he can tolerate and which direction we go. Plus, I wanted to make sure he had time to adjust when we got there. He told me he wanted to take his tablet so he could show his music therapist and Santa. We got ready and we put our hats on. This time he let me. We got there and he was so excited to see Santa. He was a little hesitant at first but his music therapist took him over and he did great. He told him that he wanted a new hat for Christmas. He then sat with his music therapist for a little bit. She had to go do other things and he told me more about seeing Santa. I was able to convince him to not “lay down” in the mud. I told him that I didn’t bring the towels with me but we could do it tomorrow if there was still mud. We left shortly after that and on the way home he talked about seeing Santa and his music therapist. His focus shifted and he wanted to make sure we crossed “the blue river” and that he was going to see Grandma tomorrow. He was very happy when he got home and I’m praying he sleeps tonight. He knows that if he doesn’t sleep he might not get to go to grandma’s house. He fell asleep yelling that he saw Santa and his music therapist. It was a good day and I do believe it lived up to his expectations and it surpassed mine. Let your dreams be your guide for the perfect day and make it happen. Smiles to all and donut daze!
Owen is so happy about seeing “Santa tomorrow to-mor-ROW tomorrow.” He wanted to make sure I knew it was tomorrow and he said it many different ways all day. He went to bed talking about him, woke up asking about him, and was ready to go see him Friday night. We may have found the next new favorite month. He told me he was going to ask Santa for a present. I asked him what he wanted. He said, “A new hat” and an “iPad with Dr Panda Cafe.” He asked me for a phone for Christmas the other day. I think he has his electronics sorted and he asked for a “new hat game.” He said, “You open a present.” Maybe this year his presents can be gift-wrapped and not in a bag. Before the gift was as it was, not to be opened, and no paper was taken off it. With gift bags, it didn’t cause as many meltdowns if he could see what was inside it without tissue paper. We got ready and went to wait for the bus. Pure excitement again washed over him when his bus was coming around the corner. Off he went dreaming of Santa and all that he had to do today. He knew I was picking him up for therapy. To say he was elevated when I picked him up was probably an understatement. I talked to his teacher about all the skills that he is learning. I could tell last night when he was eating dinner that he was not sticking his whole hand in the honey mustard when he was dunking his chicken nuggets in it. She explained how they are working on using two fingers to pick up food and I can certainly tell the difference already. He was fine when we were standing there talking to his teacher but once we headed to the car the repetitive behaviors went into overdrive. He had buckled himself in and then closed the door. The progress with that alone is huge but it was so hard for him to concentrate on us going to therapy. He knows he is off of school next week but he got on his mind about going to the library. This isn’t something we even talked about doing until next week but the emotions attached to this are so hard for him. He screamed at me off and on the whole way to therapy. I talked to his therapists about his repetitive behaviors and they are going to work on a few things with him as well. He was calmer on the way home and the rest of the night with only a few minutes that were hard for him. He asked me to get him a Santa hat to wear to see Santa. I’m not sure if he will wear it but it’s cool he asked for it. Before he went to bed he wanted to make sure I knew he was going to school on the “following Monday” and I told him yes but we were going to do a lot of things before then. I’m hoping tomorrow is everything that he wants it to be and the start of a great holiday week. On journey is not always easy to explain but the love sure is. The steps forward mean there has been progress made. Keep moving forward. Smiles to all and donut daze!
Owen woke up this morning excited to go to school and talked about going to dinner with Grandma. He was also talking about Santa. Thankfully, he was feeling better and then hopefully it will completely be out of his system soon. He got his tablet, and he sat with me in the “white bed.” He was talking about going to dinner and wanting to go to the park before. I asked him if he still wanted to go bowling and he said no. We got ready and went out to wait for the bus. I always love the excitement he has when the bus turns the corner. He got on the bus and immediately started talking to the aide. I’m thankful for their connection and all they mean to him. When he came home from school, I was on a video call with his behavioral specialist and support. We are working on ways to help him with his repetitive behaviors. It is so hard for me to always know how to handle the situation. We talked for a few more minutes with Owen there. Once I hung up the call Owen at first said he didn’t want to go to dinner, but then he decided he wanted to go. I talked to him about why he didn’t want to go and asked him if he wanted to do all of the things for the rest of the week. As soon as I started mentioning all of his other activities, he quickly decided he wanted to go to dinner in the park. I feel like sometimes it’s hard for him to process what all of the steps are for him to be able to go someplace. He ate a snack and then we left. On the way to the park. I asked him if he wanted to ride his bike. Depending on what he said, we would have gone to a different park. He didn’t answer until we got almost to the park which didn’t have an area for him to ride his bike. Also, once we pulled up to this park, I realized it was a mistake. Owen likes to play on the swings but for whatever reason they have the special needs swings high off the ground, and it is extremely hard for him to get into them. I will remember this for next time and not take him to that park. We left shortly thereafter to go to dinner. He was slightly elevated from emotions and still not feeling great but he ate his dinner and he had conversations with us. On the way home it’s a never-ending emotional journey. He’s learning how to communicate and express his emotions but it’s the repetitive behaviors that get me. He says he wants to pinch me and then he will say sorry Mommy. He will also scream because he wants to go in a different direction. Once we got home, he calmed down and he wanted to play his games on his tablet with me. There is a keyboard app that he likes to use, and I was amazed at how he was following the instructions. He played his harmonica for me and talked again about seeing Santa Claus on Friday. Thankfully tonight the repetitive behaviors were not as much as they were last night and he fell asleep talking about going to therapy tomorrow and me picking him up. Through the rollercoastery moments, we made progress by being able to work through some of those harder moments without a meltdown. Let this song in your heart be the Road to the melody of your life. Smiles to all and donut daze! Some days I have to focus on the progress. OK, so most days I have to focus on the progress. There are so many days that feel rough around the edges with all the repetitive behaviors; now from both of us. Off to school, Owen went. He was not as snotty today as he was yesterday when he woke up so I believe that is a good sign. He was happy to go. He missed all the steps of his day yesterday. He kept talking about wanting to walk to the library with his bus people. He also told me he wanted to go back to the bus garage like we did the other day. The impact these people have made on his life is incredible. I’m thankful for the connection to all of them. He told me last night his doctor didn’t wear blue pants and he said, “I’m sorry.” He is thinking about that too. He talked a lot about going to the library. He also told me we were doing nothing until we go to therapy on Thursday and getting a pizza. He also said he is seeing Santa on Friday when we go to an event that is being held by one of his therapy places. That was all before he left for school. The tides changed a little when he got home. He didn’t want to go anywhere today but he asked me if we could go bowling and have dinner with his grandma on Wednesday. I asked his grandma and she said she could but she also knows how things can change. He kept saying to ask Grandma. He told me to send grandma a message even though he knew I already had. I said do you want to send her one. He said, “yes” so I showed him on his tablet how he could send it. He was afraid it was going to be a phone call though but then he realized it was fine. He typed out the message to her and even picked out emojis to send. He answered back and forth with a few more text messages. He even wrote out November on his own. Then I helped him read her last message and he said thank you and started typing it. It made him a little anxious because he was in the middle of playing his games but I think he will get it the more we do it and he liked that he can text with his grandma. We will see what he wants to do tomorrow but the follow-through was excellent. He got out of bed several times repeatedly asking about going to dinner with grandma. I told him he already knew the answer. He went back to bed and the screams echoed with him asking again. It’s so hard when I can’t get him to process it and move forward. He was doing so much better with this and now it is constant again. I’m praying for more direction or new ways to try. We have a meeting with his behavioral specialist tomorrow and I hope that will help. I hold onto the progress and am excited for dinner tomorrow night, hopefully. Dream big and remember progress doesn’t always happen overnight. Smiles to all and donut daze!
Some days are emotional before they even begin. Being sick is hard on Owen. He was excited about going to the doctor's office so he could see his doctor, but he knew that meant he was missing everything else. As soon as we woke up he wanted to know when we were going to the doctor. I told him that I would call as soon as they were open and he kept telling me that they were open. It’s hard to explain to him that things aren’t always open twenty-four hours a day. The good news was he wanted breakfast. He asked for waffles and I made him four. He hasn’t lost his appetite the whole time he has been sick. He sat there, eating them and talking about going to the doctor. I told him that we would not know when we were going until I could actually make the appointment. He kept telling me to get ready and I told him that I had to take out the trash and then we would know when his appointment was. Thankfully, we were able to get him in for the afternoon. He was running a slight fever, and his nose was still very snotty. Once he found out what time his appointment was, he still kept asking me to get ready. I told him that we had to eat breakfast and lunch and then we would leave. He kept asking me if lunch was done. His doctor understands his concerns about blue pants. She tries to wear them when she knows he is coming, but since this was short notice, it was not for sure whether she would have on blue pants. He has been doing much better, but there are still many times when he can’t handle when someone’s not in blue pants. I tried to explain to him that he got to choose what pants he wanted to wear when we got dressed to go, but that’s still a very hard concept for him. It’s an emotional journey, watching your son struggle with something that you don’t have an answer to. When we got there unfortunately, she was not wearing blue pants. The intern that she had with her was so that did help some. Fortunately, this wasn’t as rough as some of the other times with blue pants, but it was still very emotional for both of us. I don’t always know how to handle situations when he is getting upset about something. He walked up to her and wanted to see her socks so he pulled up her pants to look at her leg. There are so many moments where I try to explain to Owen that we can’t touch other people, we can’t make them wear blue pants. We can’t make them do so many things. But that’s a hard concept for him to understand, for any of us to understand. I’m thankful for a doctor that completely gets my son. She has been with him since he was a baby. She calmly walked through all of the steps with us and Owen cooperated with having his ears, examined and opened his mouth so she could look at his throat. His fever has been minimal this whole time so she said, thankfully, there was no infection and he was cleared to go back to school as long as the fever did not increase. On the way home he wanted to stop by the burger boy. Usually he doesn’t want to get out of the car. Before we even left the doctor's office, he was talking about climbing the statue and getting out of the car. I told him that it wasn’t a building that we could climb, but he could still look at the statue. He was so excited to get out of the car and go up to the building. Once we got to the building he instead wanted to walk on the street down to his favorite school that he had never attended. The street was busy and not one that I wanted to walk on with him. He doesn’t always listen to instructions and wants to do what he wants to do. I told him we could not walk on the street and it just upset him. I explained again that the street was too busy and that we had to go home. He then stood by the building and kept telling me five more minutes. I told him we had to go so he said, “Set the timer for one more minute.” I set it for about twenty seconds and as soon as the timer went off, he headed straight for the car. I was thankful for this because I didn’t want to try to keep him out of the street. We got home and the rest of the night was a rollercoaster of emotions and I could tell he was super elevated about the days ahead. The repetitive behaviors cycle through and right now with his schedule being constantly changed this has been extremely hard on him. He kept talking about going to the library and wanting to walk with everyone he knew. Bedtime came and he went to bed but as soon as he laid there, he started yelling out about going to school and riding the bus. He wanted to make sure that he was going to see all his favorite people and then come home and stay for the rest of the night. I told him that we could do anything he wanted over the next few days and he said stay home. I told him that we could or we could go to the library. He finally calmed down and fell asleep. Days like today are very emotional but I still see the progress and know that he has grown tremendously. Hopefully, nothing changes and he will be able to go to school tomorrow. Every day is a valuable learning experience and even through the struggles we both grew today. Walk through your struggles and know your strength is there to see you through those days. Smiles to all and donut daze!
Technically this started yesterday but I kept hoping that the sneezes would not mean what I knew they meant. Yup, Owen was getting sick. This is not news I like and this is certainly not something that we want when routine is so important but here we are. Thankfully he slept all night and woke after five. That was the good part but he woke with the snotty nose and fever I didn’t want him to have. Church was the first thing he realized he was not going to get to do today. This did not put him in the best of moods. Then he realized he was not going to school tomorrow which added the next layer of anxiety. The repetitive behavior gets repetitive awfully quickly. I have tried so many exercises and theories and suggestions and and and but tiredness and the fact that Owen is beyond smart and never forgets a thing does not help the process. Today was probably the closest that I’ve gotten to distracting him or implementing a rule that helps with him associating so that he doesn’t have to continuously repeat his words. If he wanted to talk to me about school or going to the doctor he had to put his tablet down. This was not something he wanted to do so we couldn’t talk about it. As the day wore on he would come to me without his tablet prepared to discuss what he wanted. I will have to work on the motivation with him and hopefully, it will help. He told me Owen has a “vever” and he has to “go to the doctor” tomorrow because the “school is busy.” His fever stayed right at one hundred for most of the day and then was gone. I pray that it stays gone. I’m still going to keep him home tomorrow because of his nose and how he was feeling but hopefully, we can get past it all quickly. He will be disappointed if we don’t go to the doctor but I’m praying we don’t. She was one of the people he told me he was thankful for. Bedtime came and he was out. I said, “I love you” and he said, “Good to know.” Each day is a gift. Each moment in time is a learning and growing experience. And today we grew. Find your strength and grow. Smiles to all and donut daze!
Thankfully there is only one more day to the weekend but I have a feeling Owen might sleep later tomorrow than he has the last two days. He was up and yelling about his tablet before four o’clock in the morning even rolled around. Next, he was talking about going to grandma’s house and there was no stopping that train. He asked me tons of times before it was even close to time to go. My heart aches for him with the anxiousness of his day. Changes have always been hard on him and it’s still one of those things we have to work through continuously. He would yell out “grandma” but say nothing else. I’m trying to get him to understand that we have to have conversations or try to explain what he wants. He told me “Time to get ready” but we still had two hours before we were going. I’m trying to teach him how to read the clock and know when we are leaving. He’s come so far but isn’t reading it yet. We got dressed and out to the car we went. He is now opening the car door, putting on his seatbelt, and then closing the door. Progress and this keeps me from having to knock on the window as part of the way he wants it to go or he will have a meltdown for not knocking on it. The steps that I can’t figure out how to change change themselves after a while. In the car, I told him I was cranky and he said, “You are grumpy.” I could not argue with this. He had a great time with his grandma. He stayed with her for longer than he normally does and then they went driving around to the places he wanted to go. We had a party and an event we were supposed to go to but he was highly elevated and already very focused on the day. I didn’t want to stress him out more and cause a ripple effect if we went more places. Sometimes the hardest decision is to not do something but it is for the best sometimes. When we got home he was super focused on going to church tomorrow but I hope he sleeps tonight. He was at least calmer since the routine was back in his sights. Praying for sleep for both of us. Each step he takes forward leads to his independence and being able to learn more things. For this I am thankful. Let your heart shine and your dreams become your reality. Smiles to all and donut daze!
Four in the morning is very early to discuss breakfast but I was honestly thankful Owen slept that late. Any and all breaks in routine cause the ripple effect that makes me want to cry. It’s so incredibly hard on him. He can’t fathom how his routine is gone. My mind is already wandering to Thanksgiving and then Christmas. The breaks will be so hard on him. When he woke up he started talking about “breakfast with grandma breakfast with grandma.” He repeats it over and over and he wants me to answer something, interact somehow, or from there it spirals into a whole other dimension. I can only imagine how he is feeling when his days don’t go according to plan. He found the roads by the bus garage on YouTube and wanted me to help him look up other videos near there. It amazes me how he searches all of these videos to find the areas he is looking for. It was finally time to go to breakfast. It had been a long morning of him asking when we were going. He did great though while we were there. He ate so much and after the first few minutes, he calmed down for the rest of the time. He was very elevated today so I thought it best to stick with routine and go back home. He wanted to take a bath as soon as we got there. He told me he wanted a hermit crab and a guinea pig while he was taking his bath. He asked every few minutes until bedtime when he would be going to his grandma’s tomorrow. Pure exhaustion comes from being up at four in the morning and answering questions about the days ahead. He is already wanting it to be Sunday night so he can go to school on Monday and everything else routine. Before it was even five in the morning he wanted to know when we were going to breakfast, to confirm he was going to be at grandma’s house tomorrow, that church was still happening on Sunday, and that it was going to be bedtime on Sunday night. Each day isn’t a twenty-four-hour clock it’s a day in the history book of routine. My heart aches for my son and my tears sit in my eyes knowing that the next day off will be the same way. Maybe there’s a Curious George video that can help with breaks and that he will connect with. I tried to show him one about vacations but he wasn’t wanting to watch it with me. He has to find it on his own time. I’m praying he sleeps tonight and I know he will be happy to get his routine back in order. Celebrate your victories no matter how big or small celebrate them all. 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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