Have you ever watched a cliffhanger movie but never got to see the end, that’s how watching tv is with Owen. It’s like Groundhog Day, he keeps repeating and repeating and repeating the same five seconds of a video only to go right back to the same spot and then go back again. I’m always amazed at how he can move to exactly the same spot each time. He was working on his tablet and he started yelling out, “great job you do good work”. Makes me smile when he tells himself he is doing a good job. I wish we’d all take the time to congratulate ourselves sometimes. We push ourselves to limits, but don’t applaud ourselves for how far we’ve come. I think the dude is growing again. He ate all of his dinner and then some of mine. I lost count of the shrimp he ate when he started taking them off my plate. And a spicy chicken rice. He’s been trying more and more foods lately without any fuss at all. As soon as I put the rice down he started eating it and it was off my plate. I still had his plate in my hand to sit in front of him but I had to move his tablet. Soon as I put his plate down it seemed like it was no time and he was back to eating off my plate since he finished all of his. He had a really good day. Listened well, interacted with me, and even was somewhat patient when our internet went out a couple of times. I’m thankful for his smile, his hugs, and his kisses. I reminded him that we are a team, that we have to keep working together and respect each other. Today I smiled a lot, laughed more, and was thankful for how our day went. Rejoice in your victories, share your story, and know that you are important. Smiles to all and donut daze!
0 Comments
“It’s a rollie pollie rollie pollie and I’m bigger than this”, Owen started singing. When he was younger the meltdowns felt never ending. He couldn’t share his words or emotions and I know it had to be very hard on him. He couldn’t look at me straight in the eye, a lot of times it was sideways out of the corner of his eyes. He would pull my hair, bite me, scream, and do everything to try to escape into that moment. Hours and hours of screaming from him, me wanting to scream too. It generally led to me crying myself to sleep in the wee hours of the night when he would finally be able to rest. Then one day I decided he needed to connect to those moments he was going to have a meltdown so he could see the triggers. He needed to be able to realize when something was overwhelming or he couldn’t process what was happening. When I saw the meltdown happening I would start rapid-firing questions at him. Sometimes they didn’t even make sense, but I asked them anyway, knowing that he couldn’t answer them. My goal was for him to understand that I was there with him and we would get through it together, but he had to make the connection. I always started my questions the same way, asking, “where’s purple”. I wanted him to know that more questions were coming and him to be able to think about something else besides what was causing the meltdown. He needed to use other parts of his brain while all this was happening, as well. One night he still couldn’t stop the meltdown so I started singing, “it’s a rollie pollie rollie pollie and I’m bigger than this”. I took his hands and moved him through different motions, again trying to use more of his brain to get him through the moment. He couldn’t sing it back then, but years later he still sings it to me and I can always tell when he is trying to calm himself down. He will sing it while his foot is hitting the floor hard and then he starts to release his energy. Tonight I smiled when he sang the song. I knew how much he has gone through to get to this point and I’m proud of how far he has come. Be proud of your accomplishments no matter how small you think they are. One step forward is still a step. Today is your day to shine. Smiles to all and donut daze!
“What is it”, Owen said to me covering most of his screen with his hand and technically holding it where I really couldn’t see it anyways. For several days he was showing the screen to me better and turning himself around so I could see it, but now he’s back to only doing that when I move with him. We go through phases and the ups and downs of our day. Pure exhaustion has set in. The last few nights have been rougher than rough and I keep hoping sleep will find us quickly tonight. I know it wants to find me and it isn’t even bedtime yet. I’ve been trying to work on my hair with him. Every time he sees me with my hair pulled back or anything different about it he tries to yank it out of my head. It’s gotten worse since I showed him that my hair can get wet and I didn’t even wet my whole head. And let’s not even think about how hard face masks are on him. He is not comfortable at all with someone he knows wearing a face mask. Like my hair, he wants to rip it off. He has a harder time with it when he knows the person, but he still doesn’t want people to wear them. My heart aches for my little dude and how hard all of this has been on him. I’m trying not to even think about all the ins and outs of what the new school year will bring. I’ll save that for a rainy day of tears. Today I rejoice in his smile and let my heart sing with his laughter. I remember to breathe when I want to cry and allow myself to have the emotions I need to have. Go after your dreams, find your inspiration, and don’t let anything hold you back from your true happiness. Smiles to all and donut daze!
Where do you grow from here, that’s the question I ask myself a lot. How do I help Owen keep growing, how do I stay motivated to grow, how do I take the last few months and make something that has been so hard into something that is life-changing for us both. One day at a time, that’s how. After our very hard night, we had a relatively blissful day. Owen made me laugh a lot, he also made me sad even though I don’t want to think about it. He has a hard time responding to me when I ask him questions. I try to ask him ones he will know the answer to or something I know he will like, but he still doesn’t always respond. When he can’t answer me or ignores me I try to decide if it is an eight-year-old behavior, if it’s because he can’t process it, or if it’s Owen being Owen. And it could be a combination of all of them. Sometimes he will put his hands over his ears when I start talking to him. This is one of those moments when I can tell he is really concentrating on what he is doing and no matter what I say or do it will take him time to answer me. My emotions sit heavy sometimes waiting for a response that might not come. A wave of loneliness washes over me. My son is right in front of me, but isn’t always connecting to me or realizing I need him to respond. I get it, I understand that he can’t, but it’s still emotional. Two hours into the bedtime process and there was no end in sight. Every time I thought he was asleep he would start screaming about getting ready. All I can do is breathe some days, remember the laughter that made me smile, and thank God for the progress we have made. Find your inspiration, smile even if your heart is braking, and know that tomorrow you can make your dreams come true. Smiles to all and donut daze!
Thankfully the rough night did not translate to a hard day, well so far, I’m thinking on the positive side though. He ate like a champ and been singing up a storm, rules do apply though. Funny I used the word storm earlier. We had one whipped through and out went our power. This caused Owen to have a major meltdown. He ran through the house screaming about the lights, flipping the switches, and then throwing himself on the ground. The last time our power was out it took him months to get over it. He would bring it up randomly running to the switch to make sure the light turned “onT and offT” even though it was already on. I got him into his bath routine for bed. That at least made him happier. I let him watch videos after his bath. It distracted him for a while. Next came convincing him that he could go to sleep when the lights were out even though he always wants the lights completely off when he goes to bed he is the one that normally controls it. The previous night of crying and falling asleep late finally caught up with him. He was out after he screamed a little more about turning on the lights. I pray they are back on by the morning. All my emotions sit heavy knowing how hard this was on him the last time it was out when someone hit a telephone pole behind our house. It might be time to look into a generator. Through chaos, I am learning to strive for calm. The calmer I am the calmer he will be. And let’s just say I have a lot of learning to do. The sun will shine again, your dreams can come true if you set your mind to it, and today is the first day of the rest of your life. Smiles to all and donut daze!
Sadness mixed with happiness mixed with a side of “veggie straws pwease” and some more sadness. That pretty much sums up the day from start to finish. Owen doesn’t always know how to explain his emotions. The pandemic still pays a toll on our everyday life. I had his teacher’s picture on our refrigerator. He was getting his milk out and he saw the picture, immediately emotions started. He threw the picture on the ground only to pick it up and try to stick it back on the refrigerator, but trying to hide the faces on it. He doesn’t understand the concept of the magnet so he kept trying to stick it on the refrigerator, but it kept falling to the floor. He screamed. And then he screamed some more. I didn’t try to take it off, but kept it the direction he was holding it and put the magnet on it. That seemed to satisfy him. He walked by it several more times, tilting his head back and forth as he looked at the blank side. He laughed, he cried, he got emotional. So many changes to our lives that I can’t explain to him. It took him three hours to fall asleep tonight, screaming, crying, biting, kicking, hitting his way through the hours to avoid sleep. My heart aches for him. How do you create calm in a world of chaos. I want to cry with him. He struggles with every change. Maybe I do too. He hasn’t had this rough of a night in awhile. I pray for calm. I don’t know what tomorrow will bring and I don’t even know what words to use with him to bring him the comfort he seeks. All I could do tonight was hold him. At one point I told him to “close his eyes”. I always forget how literal he takes this. He reached up to his eyelids with his fingers and closed them. They shot right back open and he screamed again. My heart sank a little more and I prayed for his comfort once again. Tomorrow is a brand new day. Through the rain, the sun will still shine. Don’t let yesterday control your happiness for tomorrow. Smiles to all and donut daze!
Owen was playing his guitar and he sang, “old MacDonald played the guitar eieio and on the farm he played to the pigs eieio”. He went on with the song and oinking like the pigs. And I thanked God a little more. I often remind myself this is the little boy the doctors told me might not talk. I don’t remind myself to dwell on the past, but instead to see how far he has come. I know how hard he has worked to say each and every one of his words. He asked me to “cut his toe” again, pulling my hand down to his foot to show me which toenail he wanted me to cut. The joy from him being able to ask me to help him with his toes is incredible. Knowing now that he can tell me when something is bothering him brings such a relief. He still can’t completely express what he is wanting, but here we are moving forward in great strides. He still calls my toes “birthday candle”, but he knows what his toes are called. For years he called his beloved veggie straws “cracker”, but one day he started saying veggie straws like that is what he had always called them. The dude was super hungry today, plowing through lots of food, and eating ten butterfly shrimp for dinner. I keep changing the brands and kind so that he doesn’t get stuck on one type. The first time he saw the butterfly shrimp he had a huge meltdown, even though he had them before in a restaurant it was the first time at home. He started screaming, ran to the freezer, and got the box for the shrimp. Once I showed him they were still shrimp he ate them like a champ. Our daily life is not always easy to explain, but the love sure is. Today is the first day of the rest of your life. Dance in the rain, sing in the sunshine, and know that you can do great things if you set your mind to it. Smiles to all and donut daze!
I can tell you my exhaustion is exhausted. These late nights and early mornings are getting to me and trying to accomplish anything is like throwing silly putty on the wall and seeing if it will stick. And how do I have so much shrimp in my hair when I didn’t eat shrimp for dinner. Owen’s new old thing is to walk up to me and smell my hair. He went through this phase a while ago, I think somewhere between the pulling my hair and eating my hair phases. I don’t see this changing anytime soon since it has been going on for as long as I can remember. I’ve worked on it with him, I’ve talked to his doctors about it, and there have been many suggestions from therapists along the journey, but he still is fascinated with my hair. It always has to be a certain way. He went to visit his grandma for a few hours. As we were walking out of our front door I constantly have to remind him to be careful near the steps. He absolutely has no fear, doesn’t understand danger at all, and his surroundings all blend together to him. He will completely turn around on the steps while stepping down to the next one. All I can do is breathe and remind him to hold onto the railing. I work on steps with him and we count them so he at least is thinking about where he is, but I often think he is saying the number and not really counting each step. I remind myself to breathe some more. I’m hoping upon hope we can fall asleep early tonight. It’s the Fourth of July so I can already hear the fireworks, but I don’t think they would wake me even if they were right here beside me. Of course, I have to convince Owen it’s bedtime so we will see how that goes. He’s been yawning a lot tonight so I’ve got that going for us. I’m thankful for his progress. I’m thankful for his words, the English, Spanish, and German ones he used today and maybe another language or two I don’t even know. He also keeps watching a Dalmatians video. He is doing really well with pronouncing the L in the word Dalmatian. And that is true progress. The littlest of things can be the biggest of victories. Find the beauty around you, celebrate your joys, and make today matter. Smiles to all and donut daze!
Christmas in July has started for us. Owen was listening to a Christmas song earlier and then one of the characters talked about Santa coming. Owen ran to the door and was mad because Santa did not knock to come in. He screamed for Santa. This went on for a while. He came to me saying, “Santa knock on de door”. I was thankful when his battery on his tablet went out. As soon as it went out it was like Owen was fine with saying, no Santa is not coming and he was done being upset about it. This does not always happen. He could have kept on asking for Santa to arrive and he brings “de presents”. In the past, he’s made no connection to presents. Plus he doesn’t understand what a gift really is. He has a hard time with a present being unwrapped. He thinks that the wrapping paper should stay on it, gift bags are much easier for him to handle. He ate a lot today and mostly listened until it was time for bed. The night did not end quickly. He knew he is going to see his grandma tomorrow so he asked to get ready to go for hours. Pure exhaustion washes over me as I try to put it all in perspective. I think back through our day and see victories through tired eyes. He called my toes “birthday candle”, but he actually called his “toes”. We struggle, we survive, we thrive. Today is one moment in time. Find joy in your heart, love the world, and see the beauty around you. Smiles to all and donut daze!
I have to say I’m pretty excited. Owen will walk up to me with his tablet facing him where I can’t see the picture. He then asks me what something is on the screen that I can’t see. “What is it”, he asks repeatedly, waiting for me to answer. I’ve been going through the motions of moving myself, the tablet, or him so that I can see what the picture is. I explained to him that if I can’t see the picture or hear what they are saying I won’t be able to answer him. He walked up to me, asked me the question, and immediately turned around for me to see the picture. His hand was still covering the screen because he always hovers over the play button, but I felt like we had made huge progress. I explained that we would have to push play because even though I could see the screen I couldn’t tell what it was. He wasn’t happy that I wanted to push play. He likes to do it himself and make it stop every second to hear the noise as he turns it on and off. But I was still so pleased with his progress. He did this throughout the day and most of the time he would turn himself around to show me. It was a very robotic style move, but the nonetheless exciting to see. He was very talkative today, but his words did not match watch he was necessarily trying to express. And food has certainly not been one of his top priorities. The famous “throw it in de trash” line has been said to me many times over the last week. He’s eating pretty good in general still, but he has definitely wanted it all in his terms. Sleep did not come easily for him tonight. He threw himself all over the bed, slamming his body up and down into his people. I can only imagine all the sensory needs he tries to meet with this motion. He fell asleep again requesting the “big hug” and out he went. He was mostly calm today, but there were moments of sadness that washed over him. He asked for several of his activities that we no longer do and his eyes filled with tears wanting to fall. I tried not to cry on top of his tears. Our life is not always easy to explain, but the love sure is. Follow your dreams, open your heart, and strive to give it your all. Smiles to all and donut daze!
|
AuthorI'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart. Archives
May 2024
Categories |