At some point Owen got into bed with me. I was too tired to even pay attention to the time. It seems like only a few minutes passed, and he was asking for milk. I encouraged him to lay there a few more minutes, hoping that he would fall back asleep, but also that we would have more of a conversation. It makes me happy when he wants to sing, or when he goes through the motions of the phrases he is learning. When we got up he immediately started asking for his teacher. I told him it was Saturday, and what our day held. I reminded him again that we had to go for his checkup. I went through the steps of what would happen at his doctor’s appointment. I rehearsed with him what she might ask, and what his responses could be. A wave of sadness rushes over my body; sipping hot tea, trying not to cry. We have come so far, but I still get emotional knowing that it’s hard for him to process it all. He’s excited about going to the doctor’s office; we get to ride an elevator. After we are done with his checkup we will head out to our Saturday adventures. I look forward to our Saturdays. He loves bowling. When we walk into the bowling alley he is immediately happy. The concentration, and focus he has when we get there is amazing. The one thing it proved to me, over, and over again, is to never give up. Bowling has always been something I loved; I’m not good at it, but I absolutely love it. I prepared him before we started going. I talked about it with him, showing him videos, and we even have a little bowling set, but I never imagined how much he would love it, too. Sometimes it is hard to push us to do something, because I don’t know when it will be too hard on him, or cause a meltdown, but this is why we have to keep trying new things; our success story. These days are emotional for me. This is my baby, but he teaches me to go after life, keep moving forward, and tomorrow is a brand new day. Go after your dreams. Smiles to all and donut daze!
Owen’s school was closed today; they had no power, so this meant our schedule was anything but routine. He asked for his teacher, and I tried to explain to him why he couldn’t go to school. Then he walked around for a few minutes asking for “de bus”, searching for something. At first I thought he was wanting to go to the bus stop, but then I realized he was looking for the bus that was given to him as a present a few days ago. I handed it to him, and he sat down on the couch with it. He pushed the blanket towards me, wanting me to cover him. I always remind him to tell mommy he wants help. I try to reference the steps we need to take for certain situations. I placed the blanket over his head, and he sat under it for about twenty minutes; holding his bus, and playing on his tablet. He loves sitting under blankets, and thought this is the way he is coping with his morning. He went to stay with his grandparents for the day, and we’re back home; pretty much in the same spots. I tried to get him to go do something tonight, but home means home. I didn’t have his tablet, or almond milk with me when I picked him up; I knew this would be hard on him if we tried to do anything. I asked him several times if he wanted to go do something, and his response, “nope nopedy nope nope home”. I decided not to push it. Tomorrow will be a full day for us; it’s our Saturday fun day, plus his checkup for the ear infection that he had. He smiled over at me. I can’t help but smile back. It’s exactly what I needed. His smile is the glue that holds me together some days, what pushes me forward, and makes me know that everything will be fine. He says, “no post office”, and goes back to what he was doing. Find your motivation, spread your wings, and fly. Don’t keep waiting for life to happen, make it happen. Smiles to all and donut daze!
I ran through the paces with Owen, like I always do. I talk to him about his days ahead, explaining what day it is, and what will be happening over the next few days. On Saturday we go to a followup doctor’s appointment for the ear infection he had; they want to check to make sure it is completely gone. I told him that we had to go to his doctor, and he said her name. I’m so excited that he is making these connections. The smile is still shining through when I think about it. I try to focus on those positive moments, but sometimes the days can still be overwhelming. When you think something is going to go one way, and the mention of the wrong word, or a stoplight, or even a food, throws Owen into a complete tailspin, it’s hard for us to both recover, and move forward. The other day when I got him from the bus, we were supposed to go home to pick up something, and go right back out the door. I explained this to him over, and over again from the bus stop. As soon as we walked into the house he started taking off his shoes, and clothes. The more I tried to get him to leave his clothes on the more he screamed. The screaming turned into crying, and then a full meltdown. We weren’t going anywhere. All I could do is hold him. A wave of sadness rushes over me thinking about it. I have to keep my emotions in check. I can’t get mad, sad, glad, or impatient; I just have to breathe. The more emotions I show in those moments, the more it can send him into a meltdown. When he comes home, it is a hard transition for him to leave. Wednesday nights he is prepared to go to his church program, so he is fine with those days, but there is still a routine to Wednesday nights. We have to come home, eat dinner, and then go back out. I try to stretch our boundaries, pushing our limits, but I also have to prepare myself for those days he can’t process it. Some days opening my front door is one of the hardest things I have to do, for both of us. There’s a comfort in routine, but as much as we try to stick to routine, there’s nothing about life that is truly routine. Today, I’m excited for Owen’s growth. I look forward to tomorrow, knowing that there are amazing things coming our way, one day at a time. Celebrate your victories, no matter how small they are. Each, and every one is worth it. Smiles to all and donut daze!
Owen slept all night in his bed. All the days are blend together, but I can’t remember when that last happened. I keep looking at Owen’s hand. They must have been working on art projects at school yesterday. He has a marker print all the way around his hand. It’s starting to fade, but through hand washing, and a bath, it’s lasted. He didn’t focus on the lines, and for that I’m thankful. He’s been sitting on me since I sat down. I woke up, and went downstairs to the basement to get some laundry, while Owen was still asleep. It’s one of those things I have to time so Owen doesn’t get upset. I heard his feet running upstairs. I knew he was looking for me. I quickly got up the stairs, calling to him. I knew if he didn’t see me soon he would start screaming. I was able to ease his mind before it sent him into a meltdown. There are some days I can move about the house, and he is fine with it; other days he will follow me, or start screaming immediately if I am out of his sight for too long. It keeps me on my toes. My emotions get wrapped up in a ball some days, trying to stay one step ahead of the meltdowns. The lights in the living room are starting to bother him again. He doesn’t want it on all the time; he already gets upset when the bedroom lights are on. He can’t see our bedrooms from the living room, but he can still see the shadows that it casts. I never imagined the emotions that would run through me when a light turns on, or off. When I walk in my bedroom, flipping the switch, I wait for the scream, even if Owen is asleep, or at school. This is a process for both of us, learning, and growing, as we go. I see how much joy my son brings to others, and I know he is my gift. I thought about how lucky I am to see Owen’s smile. Through challenges look for the rays of sunshine. Smile, and watch the world smile back at you. Smiles to all and donut daze!
We walked to the bus stop hand, and hand. One of us screaming, short burst of screams, laughing hysterically at how funny it was; the other one not impressed with the screaming. I try to explain to Owen what screaming means, but explanation, and correcting him only bring on worse behaviors, but I keep going through the motions, because I know it will all click. This is a moment in time for him, figuring out how his body works, how to get attention, and what the consequences are when he does something wrong, or right. The words he says back to me, in those moments, don’t always reflect what he wants to say. Yesterday, as we were talking about him screaming, he says to me, “no lunch no lunch I’m no going to eat lunch today”. This was at dinnertime. He ate most of his dinner, and he was at school for lunch. I’m sure he doesn’t always eat all of his lunch, but a lot of times his clothes tell me otherwise, or his teacher will let me if something is different for his day. He got very adamant about his lunch. I’m not sure why it was upsetting him so. But sometimes the words he says have other meanings to him, or let’s him express his emotions. I went through the steps with him; breakfast, lunch, dinner, and snacks. I even explained to him that some people call different meals, supper, or even something else. He stores all this information, and uses it when he can. There are things that I will say to him, or I know he has learned along the way, and one day he will randomly start referencing them, or he will use them to explain something else; like Santa Claus. I explained to Owen that Santa Claus was no longer at the store, because he had to go back to the North Pole. Now anything that isn’t where it is supposed to be, in his eyes, is at the North Pole. The bus was at the North Pole, his food has been at the North Pole, the bowling alley was at the North Pole, and the list goes on. He told me, “Santa take care of de bus”. The connections are forming, and he is doing amazing things. Our life is not always easy to explain, but the love, that’s the easy part. Owen is my motivation to keep finding ways to be a better me. What’s inspires you. Make today matter. Smiles to all and donut daze!
Owen couldn’t fall asleep last night. I was exhausted. It was a day full of pushing limits, and self discovery. He is making more connections to the words he is using, and how to communicate with me, but there’s still those moments where he talks in only sounds, and gets frustrated when I don’t understand what he needs. When he was still fighting sleep, and it was almost ten o’clock, I put him in bed with me. He still struggled, so did I, but we eventually fell asleep, him sleeping through the night. The past week has been extremely hard, more emotionally than normal, and Owen has been screaming a lot. He knows how to push my buttons, and I’m trying to teach him that he doesn’t need to scream to get my attention. These have been some of the loneliest days, waiting for answers to questions no one seems to have the answers for. I see this spark in Owen, it’s growing every day. It’s what keeps me going when I feel like everything is crumbling around me. He’s my hope when I feel at a loss, he’s my motivation when I wonder how I’m going to make it through our days, because I know that I have to do better for both of us. When Owen got off the bus he was full of words, and wonder. I was excited for the conversation, even though it didn’t completely flow, or make sense, we walked all the way home talking, and that’s what matters. There are days where loneliness sits next to your loneliness, and it doesn’t even want to talk to you. But today Owen pushed my loneliness aside, and walked with me into the light. He has reminded himself numerous times to stop screaming, and has been interacting with me all afternoon. This is exactly what this momma needed after a week of hard days. I keep telling myself tomorrow is a brand new day. Today I feel like it will be fine, and my hope, well he is smiling his big grin at me, and I can’t help but smile right back. Find your strength, know that today is a day, and tomorrow will be different. You are not alone. Smiles to all and donut daze!
I’m stronger than the crumble around me; that’s what I keep telling myself, the crumble I created. The morning has been rough. Probably rougher than rough, down right tough. There are some days Owen can’t process what he is supposed to do, with what he wants to do, and what should be happening. It all blends together. And there are some days I want calm. Those are the days he usually screams the most. We needed to get ready, Owen wanted to do everything but get ready, even though he wanted to go. The more I tried to get us ready, the more he frazzled me; screaming, jumping off of things, and knocking stuff down. He laughed, and any emotion I showed was met with an attention getting scream. How do you discipline when the discipline is meet with resistance, laughter, and also comes back at you with more adverse behaviors. Owen’s independence is growing, and with that comes new behavioral issues that we will have to work through. This is as much about how I handle Owen having autism, as it is about Owen having it. We are currently sitting in the dark, because Owen wants to run over to me, and ask me if he can “turn de wight onT”. He had been running to his room, sitting on the edge of his bed, when I stopped him from doing that, he turned to light duty. His bed is off the ground, with storage underneath. I thought it would be a great idea, because it has an edge all the way around it, and it would be hard for him to fall out of it, but instead he likes to sit on the edge, trying to hang on, and fall off, all at the same time. He doesn’t understand danger, and every day I try to find ways to keep him safe. I know that I have to stay strong for my son. Every step I took today felt like the ground was firm, and my knees were weak, but I know that I must keep pushing forward. We’ve played a lot today, hoping that it would conquer some of his mischievous doings, and calm my soul. I remind Owen that we are a team, and we have to work together. Believe in yourself, and the rest will follow. Some days feel hard, but know that you are a lot stronger than you think. Smiles to all and donut daze!
We are back to the no sleep world. Well, Owen sleeps, wakes up, gets into bed with me, and goes back to sleep. Me, I stay up, go to bed, fall asleep, wake up, fall asleep, wake up, fall asleep, Owen gets into bed with me, and I’m awake. He is all over the bed, like an octopus holding onto a freight train, carrying an elephant, that’s looking for its teddy bear. He makes soft sleeping noises, and then he’ll yell out a word, or phrase that has occupied his mind for days. And then there are days, and weeks he will sleep all night, not one peep. Oh, to be back on that glorious sleep cycle. When he woke, he asked me, “are you cranky”, followed quickly by “babyredbur”, running all his words together. The last few days, he runs up to me trying to say “baby red bird” from the Mickey Mouse Clubhouse; so immediately when he woke he started talking about it again. He’s in a great mood this morning, ready to go bowling, and the coffee shop. He was right though, I might be a little cranky; I’m sure more coffee will cure some of it. This has been a very emotional week. I have to juggle a thousand things when I can’t even walk into the other room without Owen getting upset some days; following me, screaming, turning out the light that I need on, or moving back any of the things I moved. Even in chaos he has an order. I keep telling myself to look at how far we’ve come; both of us. I have to focus on the fact that Owen is my gift, and I’m thankful for all he has given me. There’s a sparkle in his eyes, and a determination to thrive. He sat on my lap, naming animals, so I would make the sounds, tickling him through the moments. His laughter cures my heart, that sometimes feels like it is in a million pieces. He’s ready to go bowling, I’m ready, too. I wish everyone could experience pure joy like he has when he walks into the bowling alley. Sometimes life doesn’t go according to plan, but sometimes the new plan is exactly what you need. Find your joy, and watch how the world opens up around you. Smiles to all and donut daze!
I took Owen to the school bus, and as I was walking home I saw my reflection walking with me. There were three distinct shadows from all the lights hitting me from different angles. I immediately thought about the story of the Three Bears, but Goldilocks was nowhere in sight. I suppose I could be Goldilocks, but nothing seems like the fairy tale. Some days the reality of it all sinks in more than other days. My little boy struggles with so many things; me too. He smiles over at me, I smile back, and he squints his eyes. He starts talking about the post office. “No post office”, he says. “I’m not going to the post office today”, he continues. As soon as I picked him up after school, he started talking about not going to the post office. I thought about the Three Bears story again. Goldilocks wanted everything just right; I wish I could do that for Owen. The post office fills him with such anxiety that I don’t know how to help wash it all away. A different post office was fine, but the post office he loves from the outside, with the amazing textured bricks, continues to cause meltdowns, and discussions months later, after only going one time. His vocabulary is increasing, with that there’s more of a connection to communication, and expressions. I pray every day for insight into how to help him with these connections. He’s come a long way, and the sky’s the limit for my sweet baby O. I tell him every day he is amazing, and he can do anything he wants to do. I’m thankful for his smile, I’m thankful for his words, and I’m thankful that he is growing. I am learning to see the world through Owen’s beautiful mind, and I know that everything will be fine. Autism wasn’t important to me, until autism was important to me. Never give up hope, go after your dreams, and find new ways to soar. Make today matter. Smiles to all and donut daze!
There are days this isn’t about Owen, but instead me. Autism is as much about how I handle it as it is about Owen having it. He’s learning how to communicate, and this is making a big impact to our days. Could you imagine if your mouth hurt, and you could not tell anyone. You couldn’t write it down, you couldn’t say the words, you couldn’t point to it; all you could do is scream. Maybe you couldn’t even scream. Maybe all you could do is rock back, and forth. Or maybe all you can do is lash out at the people around you, biting, or kicking them, hoping they will understand. Last night, Owen said, “does your mouth hurt”, my words coming back at me. He wanted me to feel his teeth. He grabbed my finger, putting it in his mouth. Without his words, I’m not sure how I would have reacted with him grabbing my hand. He’s starting to lose his baby teeth. I’m not sure if his tooth is loose, or maybe he got something stuck in his teeth, but I know he wanted my help. My emotions are welling up inside of me, trying not to boil over, crying. This is my little boy, he’s growing, and he’s changing my world every day, but there are days I feel helpless, and pray that I am doing everything I can to help him. Today is one of those days that my rose colored glasses are very blue. I feel so sad, and the loneliness is overwhelming. Owen hasn’t stopped screaming since I picked him up from school. Little short bursts of bubbling with excitement screams; these aren’t the angry ones, these are the extremely happy ones, but nonetheless emotional for me. I try to get him to talk to me, but the more I want to hear his words, the more he screams; which makes him laugh more, screaming even more when he looks at me. Now I have a smile plastered on my face, trying to keep the screams away. I heard stomping, and I realized Owen was singing “if you’re happy and you know it stomp your feet”. The connections are coming, the feet are stomping, and I’m rejoicing through tears. Today has been one of the hardest days I’ve had in a long time, realizing the system is broken, and more help is needed for families. I weep today, so I will be stronger for tomorrow. Keep pushing forward. Let the sadness go, and find strength in knowing tomorrow is a brand new day. Smiles to all and donut daze!