“Vacuum vacuum vacuum vacuum vacuuuuuum vacuuuuum” and vacuum and vacuum and vacuum, Owen has repeated the word “vacuum” all day. He truly does not want to actually vacuum and he certainly does not want me to vacuum, but he wants the vacuum in the middle of the floor so he can recite the reviews he watches on YouTube. And once the vacuum is in the middle of the floor he will scream “turn it off”. But then he requests that it be turned off multiple times when it isn’t even on. His foot bangs the carpet and he screams at the top of his lungs “leave it off”. When I turn it on he gets so excited. He wants to push all the parts, but not actually push it across the floor. That only lasts for a few moments and then he wants it off again. I truly don’t know which way to turn. He talks about it when we aren’t even home. I don’t know how to stop the cycle. I make lists about how many times we can talk through things, but he doesn’t get the process yet. And he doesn’t like lists at all. He has a hard time with certain noises or vibrations, but he is starting to explore more and wants them in controlled circumstances. I have been afraid of how he would react in a public restroom if a hand dryer went off while we were in there. Today was that day, but luckily we were the only ones in there and I explained to him it was going to make a lot of noise. Well not only did it not bother him, but he was actually excited that it blew air out. It was an automatic kind that he put his hands under and it turned on. After about five times I was able to convince him that we could leave. Every time I think I understand the process I figure out that I don’t understand it at all. So I pray a little more, hug him a lot, and thank God for the progress Owen has made. Live in the moment, dream out loud, and know that tomorrow is a brand new day. Smiles to all and donut daze!
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“One hundred and one one hundred and two one hundred and free” and on and on he went. Last night I taught Owen to count to two hundred. He did amazing. I was hoping it would help calm him and me. It takes him hours now to fall asleep, trying every way he can think to avoid it, and his little body fights it on its own as well. Tonight we will try learning the planets in order and the rest of the books of the Bible. He can already quote space facts and is very fascinated by the moon. It’s hard to convince him that the moon goes away during the day and out comes the sun. We sat in the car the other day in traffic. I couldn’t pull over, I couldn’t reach him, and I couldn’t stop him from screaming about the sun. He kept yelling, “look how pwetty see the sun look how pwetty”. My heart skipped a beat. I prayed and prayed that he was truly not looking into the sun. He doesn’t understand, nor can he grasp the dangers of this. I did everything I could to distract him. What seemed like hours for us to move with the traffic was really only seconds, and as I calmed I realized he really wasn’t staring into the sun. If I tell him not to do something that’s when he’s all kid. He will try that much harder to do exactly that. This morning, as we were waiting for the bus, a train went by. He started counting the cars. I don’t know that he started counting right away, but I do know that he didn’t lose his place as he counted. He started counting and then he was silent. I asked him about counting the train and he started saying the numbers out loud again, moving ahead in numbers. I’m thankful he loves learning and school. As the train went past I thought about him counting to two hundred and how his words are becoming clearer and clearer. His words will help him express his feelings and needs. Every night as he “reads” The Very Hungry Caterpillar to me I rejoice these moments. I know where we have come from and I am focused on our future. Today is the first day of the rest of your life. Make today matter. Smiles to all and donut daze!
The car is becoming a huge request for Owen. He was almost to the point of tears because we didn’t take the car to the bus stop. This is one of those things that once the train is in motion, or rather the car, where does it stop. If I take him in the car today, but can’t tomorrow how will he handle it. Will it cause a meltdown every day if we don’t go in the car. I have to be prepared for that. Sometimes it makes the situation worse if we do certain steps without a reason. And then I think maybe this is his way of telling me something and I should listen to him. The car, in general, is so hard for him. He wants to get exactly where we need to be without stopping for anything. As soon as a light changes to red I brace for the screams that don’t always come, but have come enough that I’m expecting them. He will even shout out, “it’s green” if for any reason I’m moving slower down a road or have to stop for a car. I try to explain to him that we can’t go when he thinks we should, but that doesn’t always help. He did great in the car last night as we drove to church, but his focus had moved to seeing the moon. He wanted to see it and every time I turned he then couldn’t see it through the window, plus the mountains kept getting in the way. How do I explain any of this to him. He’s very fascinated with space and rocket ships. He started watching them on the Mickey Mouse Clubhouse and then he would play games with rocket ships, counting them down for blastoff. When we got to church we sang about the moon and he told me other facts that he had learned. He has stored so much information, waiting to be able to say the words. There is no greater feeling than hearing Owen tell me something that I know was years in the making, reciting phrases that he learned as a baby and performing actions he can do now. Miracles happen every day. I watch mine grow before my very eyes. The little boy the doctors told me might not talk is not only talking, but singing songs while playing an instrument and reciting facts about the moon. Never give up. Dream big, live loud, and make today matter. Smiles to all and donut daze!
Owen flipped around in his bed last night, from one side to the next, not settling for over an hour. The request for songs, books, the bathroom, the lights to be on and off, and the list went on. I have to remind myself to breathe through these moments. Every time he does another flip on his bed I wonder how long this bed will last, what I can do to support it, and how I can encourage him to stop, even though I know that his body is in motion constantly. I work with him on calming strategies and I often think they are for me as much as they are for him. I do different joint compressions and massage techniques with him, but those don’t seem to be what he wants as much anymore. His body is changing and I can tell how much he has grown over the last year. When we were coming home from school yesterday his words flowed like a river to my soul. There were so many words and expressions all packed into the drive. I wanted to go around the block many more times, but I knew that would only stop the words because his anxiety would question every move I was making by not going home. He had a really good night and played his ukulele while singing several songs. He generally pulls the strings upward not really getting a sound from them, so I gave him a pick to try. He thought it was funnier to drop it inside the ukelele than to use it. I tried a different approach and he was able to move his fingers over the strings easier. He sang one of the songs he learned at church called Super Wonderful and then Twinkle Twinkle Little Star as he strummed along. His little body again wanting to keep moving and not standing there while he sang. He doesn’t have enough hand, eye, body coordination to be able to hold the ukelele, sing, and walk yet. I sat the ukelele across my lap and let him try it that way. Sometimes he will sit with the instrument, but I also think he gets agitated quicker like that. My heart sings with his progress though and I’m thankful for his love of music. Find what inspires you, sing it from the rooftops, and make today matter. Smiles to all and donut daze!
It was snowing as we walked to the bus stop. Before we even completely got out the door Owen started talking about “getting in car”. This is his new thing. We walk about a block to the bus stop, but now he always wants to get in the car. I told him that it wasn’t raining so we would walk. If the weather is bad I will drive us, but it was barely snowing as we started walking. I could hear the ice crystals as they were hitting the pavement. It almost sounded like little shards of glass. Owen stopped me as we were walking and said, “it’s snowing” holding out his hand to catch a flake. In that instance, I was overwhelmed with emotions. My boy, my sweet baby O, understood it was snowing and he was wanting to catch a snowflake in his hand. This was exciting for me. He grasped what was happening around him. And then I stopped in my tracks. I realized if I could hear the snow he could hear the snow. Maybe the sounds were too overwhelming for his senses and that’s why he wanted to ride in the car. I’ve always been sensitive to sounds and smells, but I’m even more aware of the pins that drop in the world. When we got to the bus stop his fascination for the snow quickly changed to the excitement for his bus approaching. There ain’t no smile like a bus approaching smile. The dude was happy to see it come. One of the greatest joys is when Owen expresses his love for something. When I picked him up from school, we were still standing there with his teacher, and he said, “I have to go to sweep and den” wanting me to say he would be back at school tomorrow. But what came next makes me the happiest. He said, “I loves school”. Yes, my sweet baby O, you love school. Through life’s challenges, there is always a moment to smile. Be motivated to make the change you want to see in the world. Smiles to all and donut daze!
I can tell you today did not come soon enough for Owen. It was back to school day after the long holiday break for him. And my boy rejoiced. It was two full weeks and from his reactions, I think he gave up about day ten that he wasn’t going back to school. He would get very emotional about it. He asked, by saying, “I have to go to sweep and den” wanting me to fill in the blanks of what would happen the next day after he went to sleep. Every night and every day and many times over he would ask that question, sometimes saying, “go to sweep”. It’s his go-to saying so he knows what is happening for the next day. He loves his routine and it helps when it all stays the same. When I picked him up from school he asked the question before we left the classroom, he asked it multiples on the way home, and almost on cue came running to me asking it again. I am very thankful he loves school. When we got to the bus stop this morning he was giddy with excitement. Then the bus turned the corner, he grabbed both my hands and started moving around, swinging my arms. His smile was as bright as the stars and it carried me through my day. His excitement has not stopped since he got home. He thrives on routine and he loves learning. He doesn’t comprehend why there are changes to his schedule and he can’t do something he wants to do. To me, it is a learning process, as well. I have to come up with ways to explain life’s changes. He is only now, after years of working with him, able to handle visual displays of schedules or events that are taking place. Anytime I tried to show him on a diagram or something like a calendar he would throw it on the ground or rip it off the wall. I tell Owen all the time we are a team and together we will get through this. For today I’m over the moon with the happiness that radiates from my sweet baby O. Find something in life that inspires you and brings you joy. Smiles to all and donut daze!
The rules changed. How, why, when and I don’t know circle in my mind trying to figure out how we went from having the lights on when Owen fell asleep to him now wanting no lights on, give or take, possibly, maybe the lights from one of his stuffed animals or noisemakers but otherwise not one light on in the house, anywhere. My head spins with the options and order I’m supposed to do things in to make sleep time and awake time into a perfect scenario to make everything right for our day. And so it goes. Last night it took Owen hours to go to sleep. Every time I thought he was asleep he would pop up from the bed. Sometimes completely getting out of it to go turn off another one of the lights in our house, sometimes it was to throw his body in the huge amounts of pillows he has on his bed for the input he needed, and other times wanting “let’s go potty” - knowing this is one I would never refuse. It was almost eleven before I finally crawled into bed. I was out before I could even count one sheep. Owen got into bed with me around four and slept for a few more hours. I was thankful for that. When we woke for the day he had one thing in mind, “turch turch turch”. He is working on how to say the “ch” sound and it is fascinating to me how he is processing it. He can say the “ch” sound in the word depending on where it is located and what other words he is saying it with. I feel blessed when the words flow from him. I know the struggles it took for him to learn each one of those words and to use them. Tears form in my eyes thinking about the progress he has made. Yesterday was a rough one, but had fantastic edges with growth and fun sprinkled all around. Through tired eyes and the challenges we face I learn, grow, and change. Love, compassion, and understanding have a whole new meaning to me and throw in some patience with that too. Focus on the positive side of life and the rest will follow. Make today matter. Smiles to all and donut daze!
Drifting into Saturday. Today’s one of those days I want to hang the gone fishing sign out. Not feeling it. I don’t think we’ll ever have enough blankets. They are a sensory haven to Owen. He wants thick ones, fuzzy ones, small ones, big ones, and anything in between. I put my blanket on the couch and went to fix Owen’s dinner. I can’t even tell you how many blankets I’m staring at right now, but as soon as I put it on the couch he ran to it and is currently hanging out under my “bwanket”. He’s engulfed in it, over his body completely. He has a body sock that he loves to get in. It’s a very stretchy pillowcase shaped design that has a Velcro opening and he can fit his entire body in it, stretching and floppy around. Today has been one of those days that he has needed a lot of input, both sensory and emotional. I keep thinking we see the finish line for Christmas break and it will get better for him. This has been one of the hardest breaks for Owen. He woke this morning, knowing it was bowling day, and repeating that it was constantly for hours. I’ve tried working with Owen on charts, allowing him to repeat something twenty, thirty, even one hundred times trying to curb the habit, but he has to understand charting first and when the desired action of repeating is more important than any reward to him then it doesn’t work. Instilling new behaviors can take months or years for him to accept or understand. The vocabulary is helping but he still doesn’t have the connections to all of the actions. One day at a time. Until then the dude is excited about the world around him. All morning it was bowling and as soon as bowling was over he started saying, “I have to go to sweep so den I can go to church tomorrow”. Church has been the topic of discussion all night. So here’s maybe to an early bedtime under all our blankets and a good night’s sleep. Know that you are important and you can accomplish anything you set your mind to. Smiles to all and donut daze!
Giggle box, that’s pretty much what Owen is lately. It seems to be a way he is processing interactions with me, as well as laughing more at funny things. I often wondered if he got humor. And I wondered if he knows when he is being funny or silly. He will come up with some of the funniest responses to something I’ve said or come up to me for tickles and hugs, but I don’t know if he connects that with humor. He also laughs now when things are upsetting him or if something happens that in general isn’t funny. If I try to correct him in any way he will now erupt with laughter. The kind that shakes your whole body. He will throw himself over on the couch, rolling to the ground laughing. Trying to correct Owen is getting harder all the time. The more I try to explain or even if I only try to alter or adjust his behavior without explaining it he seems to handle it worse. His outbursts are bigger and now the laughter is his way of dealing with it. I have to be on my toes constantly about the words that I use with him. And as soon as a word leaves my mouth I want to grab it and stuff it right back in there because I can tell almost instantaneously whether it is going to cause him to be more upset or if it will be effective in helping him process what I’m trying to say. Every day I’m thankful for his words and the connections he is making. I know that with the increase in vocabulary he will be able to process why we do certain behaviors or he can use his words to explain why something is difficult for him to do or understand. One step at a time, I remind myself. I think about when the doctors told me Owen most likely would not talk. I couldn’t hold on to those words, even though I know they had to explain this, I still couldn’t believe it. I tell him every day that we have to keep growing and learning, together we are a team. Know that you are amazing, believe in yourself, and the rest will follow. Smiles to all and donut daze!
If I’ve had one emotion today I’ve had them all. We woke early and I woke multiple times throughout the night. I cannot wait until this break is over. It has been extremely difficult for Owen, probably the hardest break from school he has ever had. When he can’t figure out the routine and it changes constantly it makes it even more difficult for him. And any change is huge to him. All he wanted me to do this morning was “sit down”. If I got up for anything his foot would start taping and he got a squeal in his voice. My heart aches for my little boy and knowing that I can’t always make it easier for him is hard. He doesn’t have the comprehensive skills to understand everything that I’m trying to explain to him. At the beginning of the break, he would ask me what he was doing for the days ahead, wanting me to go through all of them. Now he asks about the days, but screams as soon as I don’t say his teacher’s name, and covers his ears immediately. I keep counting the moments until he goes back. Even when I try to keep his day consistent that doesn’t help because we still had the holidays to get through. I’m holding back the tears thinking how hard all of this is for my baby. He has rules for going places that help him establish order in the chaos around us. If I stay too long at my parent’s house that throws him off because that’s his time with them and me being there means we need to go home. He will drag my purse to the door, wanting us to leave. If I explain what’s happening with words that mean something else to him he will have a meltdown because we are heading in the wrong direction. I told him we were going to eat at my parent’s house. He thought that meant we were going to a restaurant. He loves to go see his grandparents, but as soon as I turned towards their house and not the restaurant he immediately went into a meltdown. He screamed and kicked in his carseat when he realized I was going in what he felt was the wrong direction. He kept saying, “let’s go eat”. I couldn’t even take him to the place because it was closed for New Year’s Day. I breathe, the deep breath kind to free my mind. I want calm for my baby and some days that’s impossible for him to find. I’m thankful for his words and connections he is making, knowing this will help him through our journey. Today is one moment in time. Find your strength, push forward, and know that you are not alone. 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
April 2024
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