As exhausted as I was last night I think I woke up a million times anyways. Maybe not quite that many but way too many times. I was extremely thankful that Owen didn’t wake up a million times and at least slept until after five. He however wanted me up immediately to discuss tomorrow and that it wasn’t the day to see his teacher. He knew today was June 2nd and he knew he was going to school on the 12th but he wanted no association with the calendar or counting the days. He didn’t want to know the amount of days in between but it is getting closer to him being able to accept a timeline. The reality of a timeline can change constantly based on the events of the day. I believe he understands the probability of change. I will continue to explore connections for him but part of the reason he is in visual therapy is to connect with concrete items. He walked up to me with his tablet and said, “it’s a man.” It was a boy but he wanted me to tell him it was a man. What makes him constantly say the opposite of what he wants to say? Is it my reaction, is it his need, is it somewhere in between? I could wonder forever and still not completely comprehend. He answers questions differently depending on who he is with and reacts to the environment he is in. I suppose in a lot of ways we all do that but I know he is looking for reactions and expressions on people’s faces. I think this helps him to understand his own emotions. He was extra needy for sensory input today. I know it is partly because of him not feeling well. His stomping is amplified in moments like this. He stomps off in one direction only to return right back to the same place. He wanted all the lights off again. If I turned them on during the day he would come behind me and turn them off. They went on, off, on, off, on, and off again. The rhythm, the pattern almost feels like he is even finding comfort in it. I thought we were going to go to the park so he could ride his bike again. The air conditioner guy came to fix our air and I thought after he left we were going but Owen had other plans. As soon as he left he took his clothes off. I said, “I thought we were going to the park” and he said to me, “we are done discussing this” and off he ran. He still wasn’t feeling great and he was preparing for his Saturday with his grandma so he wanted to stay home. Each day I pray for guidance and strength. Today was filled with lots of laughs, learning experiences, and growth. The best days are the ones where I see his smile and that happened a lot. Through our challenges remember the victories that will come after them. Smiles to all and donut daze!
The brain is fascinating and how little we understand it and how much it seems to understand on its own. The middle of the night would not be complete without a lost tooth in it. At first, I didn’t realize he had lost a tooth. We were up at least 15 minutes before Owen finally handed me his tooth. He was upset because the pirate tooth fairy didn’t come right then. He wanted his lollipop and coin. I told him we would have to do it later. Then I told him he needed to go back to bed and he told me no because he was sick. I thought this was an excuse to stay up but maybe he wasn’t feeling well. He then told me he needed me to wipe his nose. I liked his nose and then once again told him that he had to go back to bed. I could tell he was getting agitated, and he started talking about it being June. It amazes me how he can remember the days of the week the months of the year and keep track of it all. He wants nothing to do with a calendar or looking at his schedule. All of this is met was opposition. He knew it was June and he knew this was the month he would get to see his teacher again. I tried to explain to him that it wasn’t today that he would see his teacher, but he still had several more days before school started again. And I tried to convince him once again to go back to bed, but he still wanted to talk about it being June there was no more sleep to be had. He was calm and agitated all at the same time. As the morning went on, I knew I would not be taking him to his therapy. I could tell he wasn’t feeling well and his sinuses were really acting up. When I told him that he wasn’t going he said once again that he was sick, I knew I had made the right decision. The screams felt louder today. Generally, when he is sick, he will tend to make more noises and scream throughout the time. I think it is because of the noises he hears in his head from his sinuses. I could tell he was pretty exhausted all day. At one point he was watching the video of Curious George that helps him now fall asleep on his own. He was role playing on the couch while he was watching Curious George. He kept acting like he was asleep and would pull the cover up over him like on the video. His actions and reactions were also in full swing today. He needed plenty of confirmation as to what he was doing and what days he was doing them on. I did more research on how his brain reacts to words that I say, and actions that I do with him. Owen reacts to different things at different places in different ways. Between this and the way he associates colors, patterns, and words with what he is doing made me start looking at how his brain processes timing and movement. This is one of the reasons that he is in vision therapy. As I studied the brain more today, I realized that he has gone through another transition with wanting the lights completely off. I’ve been noticing that when he doesn’t feel well, the light causes him more issues. When the lights are off to me it feels like he is in more control over the situation. And I want to understand how the words that I say will cause repetitive behaviors in him. When does the behavior stop based on what I say and when do I make it harder? He wanted to take a bath and again it was great to watch him do role playing. A few days ago I started putting water in his container to wash the soap from his hair. I was joking around with him and told him that I had gotten the bottle stuck on his toe. He sat in the tub, saying that his toe was stuck in the bottle and he couldn’t get it out. The skills he used to get his toe in the bottle are exactly the progress I wanted to see and the follow through with something I showed him before and is now doing was also wonderful. It didn’t take long to convince him to go to sleep. The sleep part, however, took a little more time. I have more questions to ask his vision therapy doctor when we see her again in a couple of weeks. Even though he wasn’t feeling well I’m thankful it was a good day. Hopefully tomorrow he will be feeling much better. The pirate tooth fairy came to visit and he was excited to see his lollipop and coin. He didn’t need it, but he was happy to see it. The victory comes from following your heart, seeing the progress, and knowing that you are doing amazing. Smiles to all and donut daze!
Sleep is happening and it is an amazing thing. I turned on my bedroom light and he turned it off earlier. He turned on the light again and then turned it off immediately. He was not going to let me keep it on but I told him I needed it on and the debate continued. He always tells me it’s loud. I know he here’s the energy. I was thankful I made a doctor’s appointment for Owen. He didn’t sound any worse than yesterday but his nose was awful. Since he can’t really explain how he is feeling I’m overly cautious when he is not feeling well. He was full of energy, eating well, and still had no fever so I had a feeling it was his allergies but wanted to make sure. He had a good morning and was counting down the time for us to leave. He wanted to know when we were leaving. I showed him I set the timer and he was watching it count down. This is incredible progress for him. I think back to all the clocks he has taken out of his room and hidden or given to me so I’m thankful he is using it now as a reference point. He absolutely loves going to see his doctor. I have always told him that she is there to help us and make him feel better. She is truly a caring doctor. She knew we were coming so she made sure she wore her blue scrubs. Thankfully he checked out fine and it hadn’t gotten to his ears or throat. When we left his appointment we had a few quick errands to go to and then we were going to the park. The quick errands threw him off. He wanted to immediately go to the park. I tried to explain to him that we just had to go drop something off and we would get right back in the car. He kept saying, “and then.” It’s his common go-to phrase. He wants to know what’s next and then to be assured of it over and over and over again. Now he says, “one and done.” I hoped he would understand that once we talk about it we can move forward. I was so excited when he started learning about the months and how each day works with the months. I kept thinking maybe this would be the key to our schedule but now it makes him more anxious to some degree. It’s like he has it all memorized in his head since he won’t look at schedules or calendars. He knew it was June tomorrow and he asked about his teacher. He hasn’t wanted to look at the countdown paper she made for him but he knows that he gets to see her in June. He can’t wait until summer school starts. He loves going to the park and riding his bike. He was so excited about it. I’m thankful for how far he has come with it. He ate a huge lunch, lots of snacks but not much for dinner. His laughter is what fills my heart with gladness. He didn’t want to go to bed but he was out within minutes. Love yourself and know that you can be the change you want to see in the world. Smiles to all and donut daze!
I would love to put one of those gone fishin’ signs out. And I would love to have a non-broken house. It’s not even the fact that I don’t understand things break but Owen doesn’t. It’s also that then people have to come to fix things. And he really doesn’t know how to handle it. The morning started off with me waking up way too early. One of the hardest parts of waking up early is that we only have one bathroom. Any and every noise wakes Owen. It was five o’clock so technically it wasn’t any earlier than most days I just wanted to sleep late. He was already awake by the time I got to the bathroom. He was preparing for his day ahead. He wanted to make sure he was going to see his grandma. The morning went pretty smoothly. He was working on a new skill and he had the patience to do it. He brought his tablet to me and he worked through adding the elements to the screen. He had to count and add as he went along. He is used to grouping but these items were by numbers so he was able to get through it and could have moved on to the next exercise but he did another one. This time he was much quicker and didn’t need my help. He has been singing Christmas songs all week. He goes through these phases. I love listening to him be so happy. He ran to the bathroom after his breakfast and I could hear the faucet turn on for literally seconds and then off. There was no way possible he washed his hands and he won’t unless I’m standing over him. Water baffles me. He loves being in the tub with the shower spraying over him but rain, washing his hands, and puddles are all incredibly hard on him. He would love if he could sleep in the tub. The air conditioner man came to look at our unit. Owen was not pleased that he didn’t have blue pants on but he wanted him to play with his tablet so he didn’t scream at him. When he was done he told him goodbye. Later Owen brought him up numerous times, telling me that he had to leave even though he had been gone for hours. It is hard for him to separate all the moments. We left to get my mom and take her to her appointment. This first was fine for Owen but then he realized we weren’t staying at her house, even though I told him all morning. We got her to her appointment and we went to the park. He had a fabulous time until he once again realized he wasn’t at grandma’s house. I was going to take him to another park and then McDonald’s but he wanted nothing to do with that. He wanted to see his grandma. He had a huge meltdown in the car. It was too much for him for the day. No school, broken things, and adventures out are all too much when he wants his routine. We came home while she finished her appointment and then we went to pick her up. We went back to her house and he was happy that he got to play on her computer while I went to get our dinner. We ate and then came home. The night flew by and he was asleep fast. Tomorrow I am taking him to the doctor for his nose since it isn’t getting any better. He is excited about seeing his doctor but it is also a change. I’m praying for a calm night and a great tomorrow. And only a week and a half until summer school starts. My mom said to Owen in the car “you know what” and before she could continue he said, “I wuv you.” This made me so happy because I say it to him all the time and he was able to say it with her. He is my miracle and I’m thankful for his words and his growth. There's nothing stronger than God telling you it's going to be OK, and it is. Let today be your guide for tomorrow. Smiles to all and donut daze!
Autism is as much about how I handle it as it is about Owen having it. I try to remind myself of this often because I need to remember to be kind to myself. I don’t always have the answers but I have the love. We both have emotions and as I tell him we are allowed to have emotions but it’s how we handle the emotions that make a difference. I want him to understand that we are a team and we have to work together to get through things. He screams a lot, a lot -a lot. The screams are always because he is upset. And then add in his repetitive words and behaviors and I have to remind him that I can’t constantly respond or know the answers to everything. It’s hard and emotional because my answers can keep him from having a meltdown or cause them, and I never know if either will or won’t. We are working on breathing exercises and ways to redirect his emotions and mine. This morning we were going to breakfast with my parents and he knew it. I try to make him understand that he can’t have everything instantly but this is often met with screams or pulling of my hair. I keep praying that one day visual schedules will work with him. I’m beyond thankful that he is now starting to not only request a timer but for him to continue to check it. This was years in the making. He has requested “set a timer” for years now but only in the last few weeks has he paid attention to what is happening with the timer and watching it count down. Before we went to breakfast he kept screaming at me and I told him that if he didn’t turn the volume down on his tablet that I would take it away. This is the slippery slope. I want him to understand that his actions and reactions represent him. Timeouts never work with him but once again I thought I would try it. And once again he showed me what he thought of them. I want him to learn that he has boundaries and rules like all of us. I breathe. We got through it. A one minute timeout seemed to last two hours and forty-five minutes but I’m sure it wasn’t that long. We got ready for breakfast and he wanted to know his schedule again. He wants me to go over every day with him but if we get too far ahead then he screams and his hands go to his ears. This led to him stomping through the house yelling “no school Friday be mommy tomorrow.” I tried to show him the schedule for how many days it would be to see his teacher and he ran screaming from the room. I feel like progress is coming and that’s what I’m holding onto. We left for breakfast and he got really excited about a sign but I couldn’t figure out which one. He said, “seven six” and kept pointing. When something means something to him but I can’t figure it out what it is it can be very difficult for him. I don’t know what he was referencing but hopefully as he starts to read more signs we can work on them together. He did great at breakfast and was only a little agitated because we had to wait a few minutes. When we got home he wanted his leftover pancakes so I started heating them. I walked to my room to get something and he yelled, “mommy sit right here on the couch.” He had pulled up a video on his computer and was trying to whistle. He turned all the lights off as I sat on the couch and he told me to whistle. I sat whistling in the dark with him thinking how awful I am at whistling and then I thought about the poor bird I once had learned to whistle from me. It always brings a chuckle to me thinking about how he sounded. Hopefully, we can find some videos that Owen can learn from. As the night wore on he asked for “veggie straws not regular chips” and I was thankful for his words to tell me what he wants. He was watching videos randomly yelling out “chicken” repeatedly. I’m not sure why but he was happy. Sleep was almost instantaneous and hopefully, it will be all night. He has taught me so much about life. I’m thankful for the ray of sunshine he is to my soul. Each day is a new day. Let yesterday go and focus on the miracles yet to come. Smiles to all and a donut daze!
Send up the flares because Owen slept all night. He didn’t sleep late but thankfully he slept. It’s nice to wake up on my own schedule even though I still wake up numerous times during the night. I had been laying there for several minutes and then he came around the corner. “Tablet tablet,” he said. I said what do you say first. “Bathroom” was his response. Before I could say anything else he said, “good morning mommy tablet please.” Once again before I could go on he said, “bathroom first” as he ran off. I needed the coffee that was brewing more than I thought. I could tell Owen was still congested. I gave him some more medicine and started fixing his first breakfast. He ran off to get his school tablet and almost instantly he started giggling. I love hearing him laugh. I needed that laughter today. My brother walks through my memories frequently and some days more than others. Those memories are the daily gift I need to keep moving forward. Owen didn’t get to spend much time with “uncle wichard” but he still has left an amazing impression and legacy with my son. He brings him up at random times and it’s those real and raw moments that mean even more to me. They still bring tears running down my cheeks but I’m thankful for each and every time Owen says his name because I know the impact Richard made on him. We got ready for church and riding his bike was on his mind. He started asking about who he would see at church. Then he wanted to know about going to the park afterwards. I told him depending on the weather we were going to have a picnic with our friends. He said, “no picnic today.” He will say things like this a lot when he doesn’t understand what I’m talking about or if it is different timing than he is thinking. He is constantly talking about the days ahead but it is when things are changed or added in on him that he has a hard time. We got to church and blue pants were a thing but at least he isn’t having as many screaming, crying meltdowns over them. I will take the progress. We decided to go to the restaurant with our friends instead of having a picnic because the tables at the park were wet from the rain. It was great being able to go with our friends for lunch. After we ate he wanted to go ride his bike and he had a great time. I’m so thankful for his school because they had tricycles for the kids to learn on and then he was able to transition quickly to his bike with training wheels. The rest of the afternoon was pretty quiet. He didn’t eat much for dinner and he still has congestion. I’m hoping it will clear up soon. I still think it is allergies but if it lasts too much longer I will take him to the doctor. I don’t want it going to his chest or ears. He was happy all afternoon and that’s what mattered. Bedtime was not something he wanted to do but he was out incredibly fast and I know he needs the rest. The laughter, the smile, and the hugs are the best. Be thankful in your joys and be thankful in your sorrows. Let the memories flood through your heart and watch the sun shine. Smiles to all and donut daze!
I consider waking up at five o’clock in the morning pretty good for a Saturday when it’s the first part of summer break. Owen had one thing on his mind and that was when he was going to grandma’s house. The one thing on my mind and what I got to overthink all day was Owen’s snotty nose. I gave him some allergy medicine this morning and that helped his nose but he still seemed a little congested. I didn’t want to take him to my mom’s if he was getting sick even though I truly thought it was allergies. I knew he would continue to focus on wanting to go see his grandma and I totally understood. I set the timer for three hours. I’m thankful he is starting to pay more attention to this now. He kept asking me when we were going and I answered “in a little bit.” That’s the answer he needs to hear. If I say anything else he gets upset and eventually we come back to those words for the comfort they provide. I told my mom I was going to watch Owen for a few hours to see how he did before I decided to take him to her. Since he can’t explain how he is feeling it makes it harder for me to decide and I think, rethink, and overthink all the options. As the morning went on I kept adding time to the timer and he would read it, ask about grandma, and then go back to playing with his tablet or his BeatBo robot. Eventually, he realized we weren’t going. It was hard for him but when I talked to my mom we decided we would wait until Monday and try again. He started asking for hugs. This is when I knew he needed more sensory input. He asked for one hug and jumped in my lap. He wants me to squish him in the middle. I hold his head on my arm and then his legs fall across my other arm. Once he sits like that I know he was me to pull his legs up towards his chest. He will sit there for a minute and then start pulling his legs out of my arms, arching his back, and then relaxing as he stands up. It gives him the input and comfort he is seeking. He ran off and within a few minutes he was back asking for two more hugs, then it was three. He went to play and about twenty minutes later he was back again. This time he said, “ten hugs and then one more.” I was glad we stayed home. The emotions of the week and then his allergies have really caught up to him. He is almost too big now for me to give him input like this. I used to hold him in my arms and swing him back and forth but he’s over sixty pounds now. He’s still tiny for his age but he is starting to add on the pounds and getting taller. He requested a bath in the afternoon. I attempted to give him a haircut and he kept yelling that “the giant safety scissors too loud.” I have always given him his haircuts and generally, I do it over several days. I was able to trim a little bit of the back of his hair but that was as far as we got. I realized as soon as I started that I should try a different day because he was already in sensory overload today. He stayed in the bath for quite some time but it relaxed him. He asked me to put new batteries in his robot BeatBo. He told me to “get a screwdriver” saying it with great emphasis. It made me happy he wanted to try and unscrew the plate for the batteries. I held his hand with mine and he did several turns. I changed the batteries and we put it back together. He ran off with it and I heard it singing to him as he set it down. His nose didn’t run the rest of the day but I could still hear his congestion. We should be able to go to church tomorrow though and hopefully, he will want to have a picnic after church. The night flew by and he was exhausted. He went right to sleep without getting up once. I’m thankful he didn’t get worse and I’m praying for a great night of sleep. His laughter is my joy and his smile is the song that plays in my heart. Find your joy in the little things and know that your victories will come. Smiles to all and donut daze!
I think I was awake before I was even asleep. I knew today would be tough but it was rougher than tough and rough around the edges. But there were several happy moments as well. Owen was awake by three and wanted to play the apps on his school tablet. He loves learning and having his school tablet at home added one more thing for him to concentrate on during the night. There was no convincing him to go back to sleep and that was that. I tried to send him back to bed several times and it was met with screams and that always leads to meltdowns if I don’t stop them quick enough. Trying to reprimand him or doing timeouts can spiral us into another dimension. I’ve never been great at that mom voice. It always sounds cranky to me. I need to work on it for the teenage years. He woke up on a mission to go to grandma’s tomorrow. He had the opportunity to go to breakfast with her today and then go ride his bike but he couldn’t process that. He could only process going tomorrow but woke by three in the morning the day before to make sure he didn’t miss going to her house tomorrow. He kept watching the summer vacation video and I know that is partly how he is processing the fact that everything he loves has changed for now. I tried several times throughout the day to get him to go ride his bike but he didn’t want to go anywhere except tomorrow. The highlight of my day was dancing with Owen in his bedroom. He was playing videos and I heard a character talking in a singsong voice. I started mimicking the voice in a made up song. He started screaming as he generally does when I sing but I kept walking to his room. I sang out, “dance with me dance with me” and we danced. He laughed and threw his arms up in the air and twirled around. It’s always amazing to watch him be connected to his body. His confidence shined through. Bedtime was not lost on me. He was out, I was out, and then I woke up with a start thinking it was already Saturday and I had only slept fifteen minutes. I pray he sleeps all night and tomorrow is all that he wants it to be. Through our struggles, I find growth for both of us and that’s what matters. Our story is not always easy to explain but the love sure is. Follow your heart and let your dreams change your world. Smiles to all and donut daze!
I’ve dreaded today since last year. I didn't want today to be his last day of school as much as he didn't want it to be either. His words, his statements, his actions, and his reactions all tumbled out at me and my heart is aching. Sure we will get through it and he will have fun over the summer but it’s an emotional rollercoaster for him every time his routine is changed. We are focusing on today but that doesn’t mean he didn’t ask every ten seconds all morning long about school until he got on that bus. He thrives on that daily routine. He wants me to do all the things I do and he wants to do all the things he does. And anything that doesn’t fit in those boxes is open for discussion and that discussion happens a lot. He had a good morning but he was certainly concerned that this was his last day of school. We got out to the bus stop and he was completely focused on what was happening in the days ahead. “Be with mommy tomorrow” has been repeated from before he left to go to school, when I picked him up from school, and pretty much all the time since we left his school. Any and all breaks are hard for him. When I picked him up from school his teacher told me he did good but it was emotional. He’s still learning how to process all of his emotions. He did really well at therapy today. He’s had a very busy week so I was proud of how well he did with each one of his sessions. When we left there he wanted to go by the windows and then we came home. He brought his school tablet home and he was so happy about that. He loves doing his schoolwork on the apps and he immediately wanted his tablet as soon as we got home. He got upset when we couldn’t immediately get into one of the apps but after a little while we could. He ate his snack but he didn’t eat much for dinner. He was very concerned about tomorrow and what he would be doing. He also wanted to know about Saturday. My heart aches knowing this is so hard on him. Bedtime did not go smoothly. I lost count at four times that he got up and came to tell me that my light was on that he can’t see from his room, and that he was concerned about not going to school tomorrow. I finally had to turn my light off and then he fell asleep, maybe it was from pure exhaustion. I attempted to sit with him and that made him scream. Ever since Curious George convinced him to go to bed by himself he doesn’t want me to sit in his room. Most nights it still works like a dream. Tonight was not one of them. I pray he sleeps through the night. This has been a long, busy, emotional week for him, and lots of activities. He mentioned he wanted to go ride his bike tomorrow so I pray he will want to go. I am thankful for his laugh and that smile that brightens my world. Focus on the positive side of life and watch your world change. Smiles to all and donut daze!
Owen slept all night again. For that I am thankful. I stayed in bed a couple extra minutes since I hadn’t heard him stirring yet. I got up, went to the bathroom, and started pouring my coffee. He got up and wanted me to hurry along. I reminded him to go to the bathroom first and then we were off to “the white bed.” When we sit in my bed it quickly becomes like his. All the covers are thrown off or pulled around him into a tight ball. I try to get him to leave them but they become one big pile anyways. While I was getting ready, I heard him start watching the summer vacation song again. I know he is trying to process the fact that tomorrow is his last day of school for this year. He thrives on the routine of school and he loves going. Every bit of it is some thing he looks forward to. I can’t imagine all of the emotions he’s going through not being able to go to school every day. I can tell it feels like a loss to him and he just wants his routine to return. We went outside to wait for the bus and he was excited to see our neighbor. He goes through all of the steps with me, says bye bye to her, and then ran on his way to look for the bus. It wasn’t much longer and he was sprinting back to get on the bus. He knew we were going to one of his therapy appointments when he got home. I was hoping he would want to go. It has been a busy week for him already, and I wasn’t sure how he would react to one more activity, even though he likes to go. When he came home, he started talking about his session and we came inside to get a snack before we had to leave. He left his shoes on, and that was a good sign that we were going to be able to go to his appointment. In about an hour, we headed out the door. On the way to the appointment, there was an alert on my phone and he told me to turn the horn off. It was a very loud alert, and he couldn’t handle the noise. It’s always hard when we’re in the car and something different comes along. Luckily, it turned off within a few moments. He talked about it the rest of the way there. He had a great session and thankfully he was in a good mood the whole time we were there. On the way home. He asked to go to the park. We went to a new park since the alert that had gone off earlier kept us from going to the park we normally go to. he enjoyed riding his bike and wanted to come back to the park on Friday. The whole way home he repeated over and over and over and over and over again about not going to school on Friday then in between the times he would talk about not going to school. He would say that he was going to school on Friday and not tomorrow. He was getting to the point where it was making him very anxious and upset. If I don’t continue to say the same things that he is saying then that can lead into a meltdown. If I try to stop him from repeating the words that can get him into another meltdown, I have to remind him to breathe, and go through the exercises so that he can learn how to control his emotions. It’s hard knowing that he is so connected to school and so upset for not being able to go back on Friday. Any and all breaks from school are devastating to him, and takes forever for him to adjust to a different situation. Thankfully, when we got home, he was calmer and ate a huge dinner. He was fighting sleep at first but then once he got into his bed, he went immediately to sleep. I pray that tomorrow is a great day for him with school and therapy. I’m proud of how well he is doing in the connections he is making. Each day is a gift. Each victory is amazing and let all the memories fill your soul. Smiles to all and donut daze!
I'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart.