Well, the day isn’t finished but I’m going with no meltdowns. At least there were none on our way to church or on the way home so that’s a plus. Once Owen fell asleep last night he slept until after four, got into bed with me, and then slept for several more hours. At least one of us can sleep. “Throw it in the trash”, he chimed in when he saw me eating a banana. He was in the other room and still had to come to check to make sure I threw the banana away. He tried to take it out of my hand. This is the part that is so hard for me to grasp. He is super sensitive about the banana but loves the taste of bananas and wanted to paint with them like Curious George did. One day at a time. I keep telling myself July is going slowly fast, he will be back with his beloved teacher soon, and his routine. The glorious routine. On the way to church, he started telling me about the femur and how it was connected to the “leg and foot and body”. I’m truly not sure when he started learning about the body but it seems like a journey we are now entering. The language train is still going strong but it’s like it’s back to all one big language even though he can still tell me what language he is listening to. He occasionally throws foreign words in while he’s telling me something and I’m shocked when he tells me what it is. His words are stronger but he also gets confused easily about how to express himself. “No wheels on the bus today”, he yelled with his foot stomping. He had asked me to find the song for him but as soon as I told him that he would have to listen to it he told me no. But once I looked it up he listened for five seconds and asked me to find it again. I was like the circle is going to go round and round like the bus. I made him play his drums with the recording of the song, trying to distract him from being mad that he had to listen to the song that he requested. My head spins from trying to figure that out. The day was calmly wild. Not smooth, not hard, not quick, not slow, but we still had a pretty good day. I laid in the “blue bed” with him where he fell asleep numerous times, only to wake up every time singing a quick round of “the wheels on the bus go round and round”. And with that, I wanted to cry. My emotions get me some days and exhaustion wins. I held him in my arms and he finally fell asleep, or so I think and hope, for the night. Tomorrow is a brand new day. We are going to the park and therapy. That made him very happy. Find your inspiration and know that you can do amazing things in this world. Smiles to all and donut daze!
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“Get some more church”, Owen said. I told him don’t worry the Lord will get us there tomorrow. He has been so anxious about his routine and everything that is not happening right now. Oh, how I wish I could explain to him why screaming is not a good idea and doesn’t help his objective at all. Between his screaming, asking about his teachers, and his lack of sleep it is all putting us in circles. Then add in those emotions he is carrying are completely throwing off his bathroom behavior. And I don’t even want to think about “no potty today” when how many times can you change your clothes comes into play. I’m trying to breathe through all of his moments. Today was bowling day, our highlight. He did really well. There were only a few moments when I thought he was going to scream until the sun shined but he pulled it together. He threw the ball on his own a couple of times. He likes it better when I throw it with him because generally, we get more pins down. Everything seems difficult and emotional to both of us right now. There are so many things I have been putting off and why do them today when I can put off doing them tomorrow as well. The emotions sit so heavy with everything. His screaming gets to me. I want it to be easier for him and it always makes me think when someone will tell me this gets easier with age. I think no it just gets different. There is nothing, absolutely nothing easy about seeing my child emotional and screaming about seeing a window or not getting to go the direction he wants to while he’s in the car. I prayed a little louder today. Maybe Owen’s screaming gave me the idea. I asked God for guidance and to hear my roar. It never seems like I pray that traditional prayer with an amen at the end. But I know God still hears my cries. I pray for strength and understanding for both of us. And to make my son keep shining and growing. I told Owen today that all things were possible if he believed. As sad as I was I could see him trying to find ways to show me his love. I always remind myself and him that through our struggles we are a team. We may be sad, emotional, or drained but we have to find a way to push past it and grow. He fell asleep late once again and all I could do was think August can’t come soon enough for his school to get our routine back in order. Keep pushing forward. Find something to celebrate every day and know that you can make a difference. Smiles to all and donut daze!
Where’s the sleep button and other fine questions I want to know. Summer is not routine and routine is needed. I would also like to get off the summer train and move into the back-to-school routine train. How many times did Owen wake up in the middle of the night, I lost track. And how many times did he wake up tonight before falling asleep. That one I know, a million. I’m not quite sure why screaming has to be associated with waking up but it does. We mostly had a good day except the other screaming parts. Have I mentioned how hard summer breaks are, oh, and any breaks. He was ready for his day pretty early. He knew he was going to spend a couple of hours with grandma while I went to an appointment and he made sure I didn’t forget it. On the way there everything went well. He told me numerous times how to drive but I kinda distracted him by having him count cars. I did great at it. On the way home from the appointment he was not as pleased. He wanted “chicken nuggets french fries apple juice chocolate milk coffee new ice tea”. I was hoping one of those drinks was for me. They took too long and the windows were open but we made it. However, the ride home was bumpy. Detours and going by “the windows” were the downfall. The screaming made me want to scream too. And cry. When we got home one of us was calm as a lark and the other one of us was me. My heart aches for my boy. He ate his lunch and wanted to listen to the Little Einsteins. He then had to look up the music and art from the series. I love that he wants to hear all the different styles of music. When he was listening to Little Einsteins he was clapping his knees and singing along with the tunes. I love when he does the movements with the characters. When I asked him to smile he did this incredible fake smile that I’ve never seen him do before. It made me smile even bigger after a wild ride of a day. We finished the night with him waking up five times in a three hour span and I’m more than ready for bed. Dream big, smile brighter, and know that you can make a difference in our world. Smiles to all and donut daze!
Owen didn’t even make it until one o’clock last night before he came to look for me. I tried to convince him to go back to the “blue bed” but he said, “no blue bed today” and proceeded to crawl into bed with me. And that’s when his sleeping started and mine was sporadic. The bigger he gets the better his impersonation of a sleeping octopus being chased by an invisible pizza crust thrower while running a triathlon holding a porcupine is becoming. I woke ready for a nap, he woke ready to go to therapy that was numerous hours away. I had to make several phone calls today. Phone calls are even part of the emotional journey. I asked, maybe begged Owen not to yell at me when I had to make the phone calls. They are hard for him. Sometimes he does amazing with them and then other times he will stand in front of me screaming. I try to practice with him but it doesn’t always work and he randomly screams so I’m not sure how to help him through those emotions. We went to his therapy and he did well. There was no screaming on the way there but when we headed home there was a lot of traffic. He wanted to scream and I tried to distract him. I asked him to sing with no reply. I then asked him several questions about the languages he knows and also got no reply. I had to change gears and get him focused on something else. I told him that we had to count the cars coming towards us. At first, he didn’t understand but then he got on board with this quest once I started counting and I’m happy to report we counted “two hundred and fifty eighty three” cars. For some reason when he counts he always adds in the number eighty. But hey, we made it home without a scream. His new thing is to tell me the “baby is sleeping with a snort you have to wake it up” so as he was falling asleep he was explaining this to me and he was snorting. Sweet dreams I told him and I had to laugh at his snorts. Miracles are happening and I see his growth every day. Dream big and go after your goals. Smiles to all and donut daze!
Some days all I can do is stare into space praying for answers. Owen sat on the couch crying. I was trying everything I could do not to cry too. My heart aches for him. How on earth do you explain that people come in and out of our lives but it doesn’t mean that they didn’t matter or they didn’t care about you. Time is such a hard concept to comprehend. He requests his teacher every day. I explain to him he will see her in August. We look at the calendar, we count the days, and I explain to him that his teacher misses him very much. Then add in his summer school teacher and he’s wondering why he’s not there now. When anything but routine is not routine it’s hard. I wonder sometimes how I can make his world more routine but that’s not how life goes. He went to spend a couple of hours with his grandma and then on the way home we saw a detour sign. The highway was blocked off and I tried to explain to him that we couldn’t go that way. I asked him if he could read the sign. He started saying the letters. I know the concept was hard to understand because it’s not a road we generally go down but I still wanted him to see the visual of the road being closed. I told him that’s why we can’t always go the way we want to go. My heart ached a little more for him at that point. The routine, he needs that structure and something he can control. We had a meeting this afternoon with one of our support team. The last time we had our meeting she came to our house. Today she was doing FaceTime with us. It’s hard for Owen to understand when someone is on the phone that he knows and especially with a visual of that person. He was really upset that she wasn’t here in person but handled the phone call pretty well. It’s always so emotional for him. It’s another thing he has to process why someone is talking to him but not here. I breathe. It’s been a rough day but he’s also had a good day. No huge meltdowns even with everything that was thrown at him but his emotions came out in the form of tears and words that didn’t connect to the moment but for him they meant everything. All I can do is hold him through the tears and tell him it’s going to be fine. I got him to laugh and we sat together playing games. That’s my joy. Find what makes your heart happy and know that tomorrow is a brand new day. Smiles to all and donut daze!
At some point Owen crawled into bed with me, asking for his tablet but then falling back asleep. I’m not sure how it’s possible to wake up exhausted but that’s pretty much me every morning. I may have also been a little cranky when I woke up. I tried to snap out of it but it took me a little bit. He doesn’t always understand that I can’t make all things magically happen as soon as he wants something. Milk and waffles and bathroom and tablet and coffee all can’t happen at the same time. And one of those truly tops the priority list because it makes everything else happen quicker. Once I got my first cup of coffee in me I think I calmed down some. We had a day at home. We have been going and going so I wanted to spend one day at home. This went over better with one of us. I promised Owen that tomorrow we would be doing several things including going to the park with grandma. It was good to tell him but also this brought questions all day about when we were going. The art of repeat is what I find myself going through with him. I understand his need for the repetitive behavior and to confirm his schedule but I also want to help with his anxiety and try to minimize the impact it has on him to continue to repeat the same things. If he asks the question too often he wants me to confirm it each time but if I don’t answer quick enough or exactly the same way a meltdown will occur. If I distract him or tell him to move on he seems calmer. It’s another fine line of trying to figure out how far to let it go. I’m amazed at all the languages he is learning and trying to figure out the English language is hard enough. He was watching a video and it kept referencing “write your name” but he then would yell out “turn right no left”. I tried to explain to him the difference but he wasn’t understanding. I know it will come as he is introduced to it in other formats. He said a word in Arabic when he was explaining something to me. I recognized the word because he sings and says words in Arabic all the time but I couldn’t remember what it meant. I asked him what it was and he said, “it’s Arabic”. And so it goes. After researching the word I believe it was “please”. We finished the evening with my music man playing his ukulele, guitar, violin, harmonica, and drums. He sang Old MacDonald putting everything once again on the farm and asked for a xylophone, harp, and saxophone. These are all instruments he has seen in videos. After dinner, we painted together and after the great discussion of what to paint, he decided on a purple cow. It’s pure joy watching Owen play his music and see his growth. This is when I remind myself the doctors told me he might not talk. Not only does he talk but he talks and talks and sings in lots of languages. Never give up. Your story isn’t finished being written. Miracles happen every day. Smiles to all and donut daze!
Well, sleeping is going a little better now that we have been going to bed later. Owen still wakes up very early and sometimes in the middle of the night but at least he is going to sleep quicker. Yesterday he had one mission for today and that was to go to the park with his friend. He asked numerous times as soon as he woke up. I told him we would go in a little while. He’s truly missing his routine. He asked for his teachers and his school friends today, repeating that he wouldn’t ride the bus or see any of them but it still breaks my heart trying to explain this all to him. We got to the park in true us timing. It seems we are always fashionably late now. Between my slow walking ability and Owen not processing the steps for us to go, it takes us a while to get ready even when we are excited about doing something. Once we were there he didn’t spend much time with his friend but he did have fun. He also wanted to go to the pool that was right next to the park but I told him that we would have to come another day. On the way to there he asked lots of questions but didn’t have a meltdown. On the way home, it was a different story. I choose not to acknowledge that he was screaming. Instead, I told him how good he did at the park and told him we would have lunch when we got home. I’m not sure if me talking loudly over him helped or not but at least he didn’t have a meltdown. I made our lunch and we had turkey, green beans, and potatoes. I was surprised when he ate all of his green beans and potatoes. He loves turkey but he’s not a huge vegetable fan. As the afternoon wore on he asked for “fireworks fireworks please” numerous times, as he looked out the window. I wondered how do I explain that one. My favorite part of our day was when he would randomly sing. He is learning a few more languages because I don’t recognize the words but I can tell it’s a Humpty Dumpty version from the way he sings it. To drag his night out a little longer he grabbed his ukulele before his bath and sang with the gang from the Mickey Mouse Clubhouse. I love his excitement for music. I tell him all the time that he will be able to sing on stage one day and play his instruments if he wants to. He just has to keep believing in himself and the rest will follow. Life is what you make it so let’s make it grand. Smiles to all and donut daze!
Today is a day to celebrate. Owen slept until around five, came to me, and once again wanted his tablet. The bargaining started immediately. I told him he could have his tablet if he went back to the “blue bed”. Surprisingly that worked once again, mostly. I told him that I would set the timer and then he could get up once it went off. Well, I never set the timer but he also came back multiple times and really didn’t stay in the blue bed. Somehow I was able to stay in bed for almost two more hours though. I wouldn’t say I was sleeping though. When we finally got up he immediately reminded me that it was church day. He told me about his friends that he was going to see. I love that he is making that connection. He was very calm riding to church and I was really on edge waiting for the screams, especially when I knew I needed to get gas. He thinks we need to get gas every time we go to church so he also says, “mommy get ah gas mommy not get ah gas” and he will keep repeating it back and forth. He had a great day at church and he wanted to go get “chicken nuggets apple slices french fries new ice tea cheeseburger”, saying new ice tea and apple slices multiple times. I told him I was going to get him double fries and chocolate milk because he doesn’t like either one of them so that’s probably why he kept saying them. After I got his food we came home. I braced for impact. He talked a lot on the way home. The closer we got the more anxious I became. But he started talking to himself, breathing, and counting. He went through the scenarios, “turn right I’m not gonna turn right go straight I’m not gonna go straight see the windows we are going straight home today”. Ahh, I thought we are going to make it. The day went by pretty quickly. He reminded and asked me numerous times about seeing his friend tomorrow, going to the park, his therapy, and when he was going to see his teachers. He also wanted to talk about his babysitter he hasn’t seen in several years. Once he gets something on his mind it is there to stay. As night was approaching I was in no rush to get Owen into the bath. The longer I could delay it may be the more he would sleep. The fireworks started outside before the sun even went down. From our house, we can see them from all around. He’s never paid attention to them at all and generally, he’s been in bed before they started. Occasionally over the years they have awakened him but not always. Tonight when he heard them he went to the window and he sat on the back of the couch watching them out the window. “Not hat not umbrella 4th of July fireworks”, he said. He went on, “not cat not kangaroo not lion fireworks not fireworks big cat not big cat blue sandals nope fireworks”. He went on and on. I’m not sure if he was saying all the different items to reference something or if that was him trying to explain what he was seeing. He didn’t sit there for very long but he ran to the different windows looking at them throughout the night. The victory was there and next year we will certainly go someplace to watch them even if it is a better view from the porch. Today I celebrated, rejoice, and said numerous prayers of thanksgiving on this glorious day. Your story is not written in one day. The journey through life takes us on many twists and turns but remember you are not alone and that tomorrow the sun will shine. Smiles to all and donut daze!
Owen wanted me to wake up somewhere around five and I wanted to wake up somewhere more around not right then. I’m trying to get him to understand that even if he’s up it doesn’t mean I have to be. This went over about as well as me thinking I was going to get more sleep. But it’s the new strategy. The bargaining wheel has been set in motion. I tell him he can be awake and have his tablet if he stays in the blue bed until the timer goes off. He has now started calling his bed “the blue bed” because the tent over it is blue. I wish that magic blue tent would make him sleep later but hey he slept until five, all night in his blue bed. And I actually slept all night long in my bed since transitioning him into my old room. So why am I complaining, there are some victories in this right here. He was ready for his day from the moment he woke up but when it was time to go it took him a while to process it and do the steps needed to go. “Coffee shop then bowling then grandma’s”, he said. We were doing the order a little differently today. We got our “coffee” and headed to bowling. I love how much Owen loves bowling. He gets so excited when the ball goes rushing down the lane and then he will throw himself to the ground to watch the pins fall. When our games were done he was not ready to leave. He kept telling me he wanted to go again. “Ten more minutes”, he said and went on, “pins down”. I told him we could play another round. The excitement continued. He rolled the ball down the lane several times on his own. He hasn’t done this in quite a while. The pandemic kept us from bowling and some of his forward progress was put on hold but here he grows again. When we first got there a guy in a lane close to us was getting lots of strikes. He was also doing the proper approach to throwing the ball. After watching him Owen started walking to the lane a little differently. I’m excited to see his growth and I know it won’t be long before he is getting all those strikes on his own. After the next game was over he wanted to play again but I told him we would have to come another day during the week. I think we are going to need a season pass or my little semi-pro bowler is going to need sponsors soon. Off he went to grandma’s and he stayed there for a few hours. When we came home all I could do is pray he didn’t have a meltdown. It wasn’t the smoothest ride home but it certainly wasn’t the roughest. I’m going to focus on the progress. I can’t wait to see what happens next. Follow your heart and make your dreams come true. Smiles to all and donut daze!
The days seem to all blend together. And then sometimes emotions get stuck in one moment and the whole day seems hard. Owen slept until after five the first time and then almost back asleep until eight. That in itself is enough for me to shout hallelujah. It’s not often he sleeps through the night. And I never do. When he woke he was very calm. Another hallelujah. Sometimes he is so hyper, anxious, or in a tizzy that makes me not sure of what’s going on and if it isn’t him it might be me. His words seem stronger and more vibrant to me, using them to express his feelings and to tell me what he wants but they can still come across backwards or referencing the opposite of what he means. “Leave your glasses off”, as he points to the glasses on my face. He’s been doing really well wearing his glasses, hardly taking them off or moving them around his face. However, he is like his momma and looks over the rim. We had a therapy appointment this afternoon but before we were going my mom and I were taking Owen to the park. He loves going to the park. He doesn’t always love being at the park or playing on the equipment but he wants to go unless he doesn’t want to go and then he screams. Today was one of those days. There are certain parks he doesn’t want to go to and I don’t know why. It could be the tree cover or the shape of the equipment, maybe a noise coming from the area or he just doesn’t want to. His words can’t express it but his emotions do. We left before we even got out of the car. We tried another park that he does like and the same reaction but he wanted to “check for trains train depot let’s go to the depot” was on his mind. This went a little better than the parks but still brought emotions to him. He likes to yell out directions and then you are supposed to go exactly as he has stated. Two problems with this, right is not always right, and even when he wants to go in a direction it isn’t always possible. He doesn’t understand one-way streets or traffic jams. These moments didn’t go according to plan. He screamed out to my mom and we both told him that we couldn’t go the way he wanted to go. We went to our therapy and he did great. I told him that on the way home he couldn’t yell at me and we weren’t going to see the windows. I also told him that I wasn’t turning where he wanted me to turn that I was turning where I needed to turn. This time there was no screaming. He talked to me a couple of times about where I was going but he didn’t scream. I know it’s a lot for him to deal with. I tell him all the time that I’m not a fan of going in the car but we have to do it. I would much rather drive on a five hundred mile trip than a five mile trip with tons of lights. I want him to understand that we don’t always get to choose our way even when we want to. I pray he understands, I pray that his words and emotions will connect and he can express more of what he is feeling without the screaming. I wish I could find something that would bring him comfort in the car. For today I told him thank you for not screaming at me and working with mommy to get us home. As soon as we walked in the door he started singing Humpty Dumpty in one of the new languages I haven’t figured out which one yet but can tell by the way he sings it what it is. He amazes me every day and I’m thankful for that big, beautiful smile. Our life is not always easy to explain but the love sure is. Find your happiness and share it with the world. 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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