Owen walked to me, singing right until he came close to my face, expecting me to immediately start singing where he left off. I had to process what song it was and then I started singing “twinkle twinkle”. That was enough for him. He was happy, smiled, and walked away. Today has been one of those days that I play by our governing rules. I’m not sure which one of us is more likely to cry. He had a great morning, but the minute I try to do something out of our regular routine it throws him off. And not to mention new shoes, what was I thinking. I try to sneak new articles of clothing and shoes in randomly. This does not always work. We had to run out for a few minutes so I thought I would put some slip-on shoes on him. I knew before we even walked out the door I should change to his sneakers, but I always hold on to the hope it will be okay. I try to remind myself while saying it to him, patience and understanding. In the past week, I’ve seen progress and setbacks, I’ve seen a spark and I’ve seen anxiety, and I’ve heard words and sounds that express his emotions. I let go of expectations while holding tight to the promises of tomorrow. It seems like I’m forgetting as many of the rules as I’m remembering which is causing some of the moments we are having. One step at a time I tell myself. I’m also very hard on myself. I have tried to convince myself to be kind, but that’s easier said than done. He looked over at me and said, “I wuv ewe”. I needed it in that moment more than I could even explain to him, but he knew. He always has been able to tell my emotions and today is no different. His words brought me joy. I’m thankful for his words and I often reflect back to when the doctors told me he might not talk. I couldn’t live in that moment. It seems like I’ve begged him to talk from day one of our journey and here he is telling me he loves me. Never give up hope. Keep pushing forward and know that you are stronger than you think. Smiles to all and donut daze!
Well, let’s start on Saturday with Friday. I’m glad that’s over. What a day. Emotionally, physically, mentally exhausted. Plain ol’exhausted. Last night was rough. Owen was right on this side of a meltdown all night long and I know I was right there, too. He doesn’t always understand right from wrong and why he can’t do certain things. And sometimes I wonder why certain rules even exist. It’s one extreme to the next. Last night it went from fecal smearing after his bath and making himself sick from shoving turkey in his mouth to this morning running to “de potty”, calmly eating his breakfast, asking for turkey after he was done, and coming to me for lots of hugs. My mind spins. We go on this upwards downwards adventure every few weeks. Plugging along, singing a song and then we backtrack to a time that my mind still can’t even comprehend. He defines a sensory child, needing tons of input daily, and me never knowing when is enough and if I’m doing the correct kind of input to help his body. The last few days he has spent a lot of time in his body sock. It’s like a huge pillowcase that fits completely around him, allowing him to stretch and moved fluidly in it, but giving him the input he desires. There’s a large slit that he can get in and out of and he will take his tablet in there, spending thirty or more minutes rolling and stretching inside. He’s sat in a ball next to many, pushing against me, wanting input as well. I can only imagine what his body is going through, wishing upon wish he could explain it to me. All I can do is try to help him through these moments. My emotions run strong, wishing I could figure out how to help my baby. I see growth and I know he is changing right before my very eyes. He inspires me to keep pushing forward. Find your inspiration and change your world. Smiles to all and donut daze!
Owen woke out of sorts again this morning, but slept all night in his bed, coming to my bed around five and sleeping another hour. I tried to approach it a little differently this morning. I gave him a hug right away, telling him I loved him, and getting his breakfast. Last night he couldn’t fall asleep. Every time he was about to fall asleep, he would pop up and run to the window. Any noise is a noise to Owen. How do you make the world around you quiet when nothing really is. Sometimes I feel so lost, not knowing what will help my baby. His anxiety seems to be getting stronger. I wonder if mine wears off on him or his wears off on me. He ran to the door, many times last night, checking to make sure the locked was positioned just right. These are the little things I catch. I wonder what else keeps him on his toes. Some days I want to scream and cry and pitch a fit. This is my baby. Why is it so hard for him. And then I take a breath. He’s happy, I think, trying to convince myself that everything is okay. If I walk into the other room he comes racing after me. He could be sitting, happily playing, and then he has to follow me, even if I tell him I’m going to the bathroom. Flipping a light on brings screams or demands for me to “Turn de light offT”; only the bathroom light is an approved light. If he doesn’t scream, he turns the lights off himself, leaving me to have to turn it back on, waiting for the scream. I feel like I need one of those miner’s hats, shining the spotlight as I go. What causes him to stress about the lights, is it sensory, is it control, is it emotions. The list goes on and on. I focus on his growth, I focus on mine. My baby is turning into an amazing little boy, shining his light on the world around him. You are not alone. Your story may be different than ours, but it is as important. Today is the stepping stone to tomorrow. Smiles to all and donut daze!
Owen woke much happier today. It seemed like he was more alert and aware of his surroundings. Some days he feels very distant and not able to connect with what is happening in that moment. He wanted attention this morning and lots of it. He grabbed his tablet, turned it to a video that he always happily screams at, and ran to me screaming. His bright eyes told me he wanting an interaction. He screams all the time. Some screams are specifically an attention getter and these perfectly defined that. He wanted me to pay attention to what he was doing. I remind him to use his words. I want him to know that I’m always here for him, but the screaming, well it’s gotta go. His screams echo through my entire body. The good, bad, or indifferent ones all resonate and make me jump to attention. You would think by now I would be used to them. I try not to even react to them, but I still seem to. My reactions give him what he wants too. As the morning wore on we got ready to meet the bus. We went out to our porch and we spent about 20 minutes blowing bubbles. The pure joy that washes over him from the bubbles is wonderful. He gets so excited to see them. We work on him blowing bubbles, but he doesn’t always make the connection of how to do it. He stands about a foot away from the wand, even if I move it closer he pushes back, then he starts making blowing noises but doesn’t always push the air out of his lips. Every once in a while he’ll make a bubble appear and you can see the excitement wash over him. He loves bubbles. I think it is one of the first things he ever learned to ask for and has never stopped asking. He gets them for his rewards now too and couldn’t be happier with it. Find your happiness, go after your dreams, and make today matter. Smiles to all and donut daze!
We go in sleep spurts. Right now Owen is waking up every night around three and getting in bed with me. Luckily he is quickly going back to sleep, but it still throws the whole cycle of sleep off. I used to not require sleep, not really even wanting it, but now all I want is a full night’s sleep. Just one would be amazing. When I woke for the morning I wanted to stay in bed as long as possible, because I had a feeling the morning might be rough. It was. He didn’t want the lights on at all. The screaming started as soon as I turned the light on. He came running from the bedroom, turned the light off, and kept screaming. “Turn de light offT”, he kept yelled. He stood there and I tried to calm him. Most days he runs to his tablet, wanting to play as soon as he wakes, but today he couldn’t settle. I sat down, picking him up, while he was screaming. I told him I loved him and that everything was okay. I started doing compressions on him and holding him in a ball close to me. After a few minutes, a calm washed over him. I could see his expression change and his body become flexible again. So many days my baby wakes up in a rigid state of both mood and body. It’s hard for him to calm down and move forward. Anything and everything can set him off and in motion to a meltdown. The hardest thing for me is to calm my own emotions and not want to scream back. Or cry. This is my baby. This is my world. And I’m faced with unknown emotions every day, from both of us. I try to keep him calm, but I have to keep myself calm first. Some days I can’t think about anything else besides when the next scream is going to happen, even if it is a happy scream. My body, my emotions, my mind, all wait for that scream to come because I know it will. He doesn’t hit, bite, or pull my hair as much as he used to, but it still happens and I still wait for it. You have to be rigid and stern, yet caring and concerned. And breathe. Tears swell in my eyes thinking about everything that my sweet baby O goes through. I remind myself, one day at a time and look how far we’ve come. He’s growing and learning, and so am I. Through the rain, the sun will shine. Sadness falls, but there will be smiles again. Don’t let sadness take away the smiles of your days. Find your smile and let your world shine. Smiles to all and donut daze!
I have come to the conclusion I don’t handle stress well at all. Surprisingly I handle tornadoes about the same way. Nerves of spaghetti I tell ya, nerves of spaghetti. But somehow I kept my cool while internally screaming throughout the whole experience. Last night I walked into the bathroom, holding my phone, and it turned into a hot potato of alarming noise. It said to take shelter immediately because there was a tornado in our area. I stared at my phone in disbelief, not even thinking that it could happen. Then I hear the alarms going off outside my window. One can not panic when one wants to panic. Breathe I told myself. So I have a basement. My first thought is let’s get in the closet. The basement was not my first go to thing that popped into my head, because Owen does not like that basement. But I knew we had to get to the basement. I headed down with Owen, but before we got to the basement door I thought about him needing shoes on. Back I went to get his shoes. This in itself is a big stumbling block for us. We don’t wear shoes in the house, autism rules and routine in full swing for this. I sat him down and quickly put his shoes on, telling him everything was fine and it would be okay. He luckily went down the stairs with me. We were in the basement for about twenty minutes. He handled it all relatively well, but the basement contains things that “make ah de noise”. We had his tablet and thankfully that was helping to distract him, but I wanted to get us out of the basement. I wanted safety for us and others. And I wanted to keep it together until the alarms stopped. I’ve relived last night over and over, thinking about his shoes, knowing he had to have his shoes on in case of an emergency, but still overthinking every moment. My thoughts are with all that were affected by the storms. I hope that I have proved to myself that I can weather the storm and Owen was a champ. Life happens when you least expect it. Know that you are stronger than you think. Make today matter. Smiles to all and donut daze!
The down side of life is what I have to keep pushing past. There are so many things I need to do, but can’t even figure out how to do, so I sit, waiting for calm to wash over me. One of the hardest things for me is having Owen constantly repeat himself. And it’s not a moment of time with him repeating himself, it can be hours and hours and hours of him repeating himself. The choices are: ignore the behavior, but this makes him either scream his words or get in my face to make sure I heard the words. I can go along with the behavior and tell him the answer he wants to hear. If I tell him the answer he doesn’t want to hear the screaming intensifies or he starts crying which can lead to a meltdown. And I can also let him only talk about something so many times, giving him a chart to track the times he’s referenced something, but he doesn’t get charting at all yet. This is something you have to reinforce daily with many examples, repetitively. I’m sure I’m missing an action and reaction I need to do, but that’s where we are at. Add in the fact that he doesn’t understand consequences or the fact that screaming only gets us so far and we are at a standstill. Physically, mentally, emotionally this is my daily routine of wanting to do everything I can to help my baby and help me. Exhaustion sets in for both of us, even though he doesn’t always show it like I do, and all I want is a calm for my child and for myself. The last couple of weeks have been hard. I try to get ahead, but it only seems like I’m falling further behind. I look at my house and I see how wrong it is for my child. Laundry is on a different floor, taking Owen to the basement is hard. He isn’t great on steps unless he is really paying attention and he yells as I try to leave the room to go put something in the wash. If he sees me collecting clothes he starts screaming that “it stop making de noise”. His hands go to his ears and his screams echo through my head. How do you reason with this, how do I explain that it’s going to be fine, how do I make myself go to the basement anyway. And sometimes I just do. My eyes weep over laundry. How silly is that I tell myself. Today I tell myself you are strong, you can do this, as a tear escapes my eye’s hold. My thoughts are with other families going through similar things and my prayers are with you all. Hold on tight and know that today is a moment in time. Cry it out and let your soul go of the hurt. Smiles to all and donut daze!
He woke, he cried, he got into bed with me, and then he explained. I held him and Owen said, “does your mouth hurt ahh ahh wash your face wash your face ahh ahh”. I laid there trying to process it all. It seems like I had only been asleep a few minutes when he came to me. I tried to look in his mouth with the flashlight on my phone, but he screamed more. Requesting the light to “be turn it offT”. He doesn’t like light and especially when it is dark already. The way he was acting, and the words he was able to share with me, made me think he bit the inside of his mouth again. I told him that I was going to get up and get him some milk, hoping this would calm him. I thought Tylenol might help him as well. He wanted the milk and he wanted me to wash his face. I gave him his toothbrush, but he took my finger to feel inside his mouth instead. After a few more minutes, somehow, I convinced him to lay back down. I thought we would be up for the night. He finally fell back asleep hours later, but thankfully he wasn’t upset the whole time, only concerned with how the blanket wasn’t on us properly and he wanted to lay on my head and back. These seem to be where he finds more comfort. When he first woke I thought it might be causing him more pain, but he quickly said the same words he said to me during the night, got up, and was ready to start our day. Since then he hasn’t acted like it bothered him at all. I look at Owen and I think how much he has taught me about life. I stress about stress when I should be happy about life. I try to remain calm in a river of diversity, but sometimes my calm goes flying out of the boat like a net cast trying to catch all the fish, in all the seas at one moment. Find strength in knowing that this is one moment in time. Keep pushing forward and smile even in the rain. Smiles to all and donut daze!
Some days I trip over my words when I’m talking to Owen, knowing that one wrong word can lead to a meltdown or anxiousness that could last for hours, days, or brought up months later. Last night the rookie mistake, as I like to call them, happened. I said, “let’s go take your shower”. I meant bath, meant it, but said shower. This took thirty minutes of him pacing and throwing himself on the couch for him to calm down enough to go take his bath. Pins and needles don’t quite cover my emotions. It’s more like walking on eggshells, mixed with Legos, that have a time bomb attitude. You don’t say the wrong words. The older he gets he is paying more attention to how the world looks. The front door lock has to be straight up now. Luckily it is still locked when it is that direction, but he will race back to the door when he hears me lock it when we come home. He also checks it regularly to make sure that it is still exactly as he left it. He is more concerned with his clothes and the clothes of others; he is no longer just concerned about my clothes. When we were at the coffee shop today I had to stop him from trying to fix a man’s socks. The man was very kind. After I explained Owen wanted to fix his socks to make them even, he said that it was fine with him if he did it. The kindness of others is as overwhelming as the attitudes of some. There are emotions that seep out from me even though I want them to stay deep buried inside. Owen doesn’t understand that he can’t go around fixing other people’s clothes, but how do I even explain that to him and why should I have to. Owen’s had a really good day and I’ve had an over the top emotional one, trying to stay one step ahead of the crying. I’m focusing on his smile and not the screams that echo in the air. I’m reminded daily of how far we’ve come. Let today be your guide for tomorrow and know that you can accomplish amazing things when you put your mind to it. Smiles to all and donut daze!
When life hands you lemonade you drink it. But when you are handed lemons sometimes it can be overwhelming. You have to keep pushing forward, find ways to make yourself happy, and know that today is a moment in time. Owen has been so happy this week. His smile is contagious, even in my moments of sadness his smile pushes me through those times. I have to remember that he doesn’t always process what is happening in the moment we are in or he gets overwhelmed by the situation. I hear him trying to work through these moments. You can see the thought process as it’s happening and his words are helping him communicate his needs with me more now. I waited years for him to be able to share his thoughts with me. I couldn’t wait for him to be able to tell me his needs. I always ask him questions and I’ve always answered the questions I asked him. Hoping that he would learn the art of conversations and interactions. I wanted him to know that he could talk to me about anything, anytime. I love hearing him talk to people without being prompted. He yells across the street to our neighbor, “hello good morning tell her hello hi hi” and he stands in the same spot jumping up and down with excitement. In these moments I see how far he’s come. But in those same moments I feel anxiousness and a loneliness I can’t even describe. It’s hard to even say that when my sweet baby O runs up to me and says, “I wuv ewe”, but the loneliness still sits there. I know the day is coming, I can feel it, but I want him to tell me how his day went. I want to know if he liked his lunch or if he colored with crayons. But for today I will look at his smile and let it be my guide to happiness. Today is the first day of the rest of your life. Find what inspires you and let your world blossom. 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.