I stare at crumbs on the kitchen table’s chair. I didn’t wipe them down as much as I thought I did. I still had coffee in my mug from drinking it last night until midnight when I finally made myself go to bed. I’ve been up since three because Owen, in his sleep, started pulling my hair. I’ve yet to figure out how he can pull the tiniest bits of my hair at the nape of my neck, in his sleep. He has been doing it for years. He has the hardest time picking up small items when he is awake but in his sleep, he can do this to my hair. I laid there praying I’d go back to sleep, but instead finally give up and got out of bed. I, of course, woke up Owen when I went to the bathroom. Wood floors and a bathroom trip never prove to let Owen sleep. He got out of bed. I told him to go back to bed, I would be there in a few minutes. Instead, I came to get a drink. I opened the refrigerator to get some water and I knew the scream would come. “Turn off de light”, he yells. I told him I was getting a drink, to go back to bed, that I was coming. I don’t even know what to do sometimes. It’s not like I can stop my body from wanting a drink or going to the bathroom, but he doesn’t understand. All he knows is the light was on and he wanted it off. And the light was on only for a moment to get my water bottle out of the refrigerator. At this point, there really was no going back to sleep for either one of us. I sat down in my kitchen as I heard him coming towards me. He crawled into my lap and started biting my hair, asking for milk. School, the bus, grandma, church, bowling, gymnastics all followed. I pray for easier days for my baby. I pray that I can explain things to him to help him. And I pray for patience on days that all he does is scream, happy screams, sad screams, mad screams, hysterically laughters of screams. I told him it was my birthday today and he said, “wanna talk to grandma”. He makes no connection to the birthday song and what a birthday means. I would trade a million celebrations in a million ways in a million days if it would be easier for my sweet baby O. I share our story so others know they are not alone. Our story is about autism, your story might be different, but together we can support each other and know that we are in this together. Owen inspires me every day to be stronger and today is no different. Seek to be stronger, know that you are not alone, and be the change you want to see in the world. Smiles to all and donut daze!
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The overwhelming sensation of being overwhelmed is overwhelming. I cried as Owen sat at the dinner table. I use the term “sat” loosely. It was more like perching in the chair, maybe hovering describes it better. He wants to put his feet on the seat and sit there in a scrunched position, his bottom not on the seat itself while he eats. I don’t know how he can do it for as long as he does. He sits like this everywhere. He ate a lot for dinner. He started off with popcorn chicken, some veggies he didn’t really touch, and a couple of bites of my dinner that he didn’t like. He ate all of his popcorn chicken and asked, “French toast pwease”. Well absolutely. I fixed him a couple of sticks, thinking he couldn’t possibly eat more, and he ate them quickly too. He kept picking at his plate so I asked him if he wanted something else. He said, “more chicken pwease”. Okay, so how many more can he possibly eat. I put ten more in thinking he’ll be gone before they are done and won’t want them. But instead, they were gone in nothing flat. I was amazed by how much he ate all day. He is definitely having a growth spurt. I’m sitting, reflecting on the day, once again drinking coffee at ten o’clock at night. It seems like we went through all the holidays today. He sang a Hanukkah song first thing this morning, he moved on to Christmas, I sang “dear friends” countless times to Happy Birthday because that’s the only part he wants me to sing and he scowls at me if I sing a different name, and then today is actually Mother’s Day. He doesn’t understand what a holiday means and he certainly doesn’t understand what a break from school means. We went to see my mom. The whole way there he said, “turn right” and the fifteen minute ride home he said, “school’s over”. Technically it’s all left turns to my mom’s house and when I suggested we talk about music or anything else, he said, “we’re not going to music today”. At least he doesn’t have as many meltdowns at red lights anymore. I remember the day I became a mommy. It was the day I waited for all my life. The day I got to walk in the footsteps of my own momma and pray I was as good as she is at it. Owen’s my complete and total world. I pray every day for guidance, patience, and understanding. I never imagined the journey would be like this and our days are never easy to explain, but the love sure is. He was trying to tell me something tonight, thinking he was actually saying what he meant, but I didn’t really understand. He said, “I momma I you the baby”. And he smiled. My heart knows it was love and I smiled too. I pushed a lot of sadness away because his smile is his love. Push through the sadness, reflect on your gladness, and know that tomorrow will be a brand new day. Smiles to all and donut daze!
When you can Saturday. Owen only mentioned school once today and ironically it was right before I got a phone call from the school board talking about the meal plan for the week ahead; they are still providing the kids’ food during the quarantine. Owen’s actually a pretty good eater. It was not an easy road to get there and it’s not an easy road to stay on, but we’ve worked very hard to keep him growing with his food “choices”. Early on one of his therapists explained how I should rotate his food and not let him see packaging. He was dairy and gluten free for years, only recently have I relaxed this. I found several varieties of chicken nuggets and I would switch the different brands every other time so he didn’t get stuck on one kind. He is very sensitive to smell, texture, temperature, color, and even the shape of his food. I didn’t quite understand the importance of this until one night when I gave Owen a different brand of chicken nuggets. I sat the plate in front of him with the different brand, one he hadn’t tried before, and as I was walking away something told me to turn around. He had that plate above his head ready to throw it. I told him, put that down those are chicken nuggets, you like chicken nuggets. He put the plate down and after a great inspection, he ate them. Tonight for dinner he tried mozzarella sticks. I always make him try one bite of foods and then he can tell me if he wants more. At first, he refused the bite. I told him to try it and he loved it, ate several sticks, and asked for more. Some foods I can tell right away to not even make him try a bite. He will start gagging before I walk in the room to let him try it, he’s that sensitive to smell. I told Owen I was cranky. He said, “no cranky today cranky’s gone”. When I put him to bed he said, “buckle my seatbelt” and I thought this will be a bumpy ride for sure. He actually fell asleep pretty quickly, but it wasn’t an easy journey. He cried as I held him in my arms, still confused about where all his favorite things have gone. My crankiness turned to smiles and my stress fled as my sweet baby O said, “I wuv ewe” and drifted off to sleep. Find your strength and keep pushing forward. You are not alone. Smiles to all and donut daze!
I never imagined the earth-shaking emotions I would go through daily only to soar the next minute into a glory like no other. The two-hour struggle for Owen to fall asleep is gut-wrenching some nights. He heard a dog barking outside when he was almost asleep. That added an in-depth conversation about “see the puppy”. Then he kept asking me to get ready. Loneliness swept through my veins at that moment. I can’t even begin to explain to him why he has no school or activities right now. I spent an hour last night working with him on FaceTime trying to get him to understand that people can be seen if he wants to talk to them. It’s an up and down battle because some people he has no problem with and others he won’t even let me talk with them on the phone. Anytime my phone rings he will come running, standing next to me with his ear close to the phone. Depending on who it is he will try to grab the phone from me and hang it up. All of the messages that I get from our school board telling me of things to come get met with screams and him trying to take the phone. This gets me sipping my coffee at ten o’clock at night trying not to cry. Nothing is easy for my baby. I sit here in the silence going through the day, trying to find ways to make it easier on Owen, on myself. I get emotional because I can’t always help him and when he says, “school” I know he wants me to reply, “is over”. I start singing songs now, trying to make him laugh. It’s more to keep me from crying or losing my patience. He says it a lot, a lot a lot, and then a lot more. And if it’s not about school it’s about other activities he wants to do or items he wants. He woke up this morning and his focus was “box”. At his grandparents, they have a computer tower. We only have a laptop. He likes the monitor and tower they have, turning it on and off, and doing his “work” on the computer. He calls the tower “box” and because he likes everything to look as it should he wants the box instead of the laptop. I was working on sentence structure with Owen using the suggestions from his speech teacher. I said, “what color is the grass the grass is green”. He said, “grass is green”. I said, “what color is the sky the sky is blue”. He said, “what color is the sky the sky is clouds and moon”. My little amazing rock star, astronaut, computer engineer, semi-pro bowling gymnast in the making is learning so much and has come so far. That, I remind myself, is what I focus on. I kept the tears pretty much at bay all day. Coffee to the rescue a lot of times and hugs from my sweet baby O when he wasn’t trying to eat my hair. Today I grew. I don’t want to admit it, I’d rather be hard on myself, but I grew. Be bold, be beautiful, be you. Smiles to all and donut daze!
“School’s over”, Owen repeated as he rounded the corner to me. He had just woke up and came to me in the kitchen. I scooped him up and sat there hugging him, hoping to distract him, but the same words kept being repeated. We both went to bed exhausted and he actually stayed in bed a little longer again this morning. He was yawning as he came to me and most of the morning felt like slow motion for both of us. Sometimes the moments become overwhelming and emotional for me. I handed a packet to Owen, asking him to “set it down by the red”, pointing in the direction he needed to go, by the door. He held the item closer to him with one hand, sounding out letters like he was trying to spell the words I was saying. His foot started tapping the floor so I knew this was quickly escalating to a situation I needed to change. Instead of having him put it down next to the red item, I had him hand me both. He was struggling with the concept of putting something down. And off he went to play again. I breathed. I swallowed the lumps forming in my throat. Owen has come so far, but what seems like an easy task can quickly turn into a meltdown for him. It’s another skill we have to work on, I thought. My sweet baby O, my heart, my soul, and my inspiration. All I can do is keep moving forward. I turn around to see potty training 101 flying out the window again. I quickly get him into the bathroom changing my sadness to the overwhelming moment of being overwhelmed. Routine has caused the backtrack of potty training, yet he is still doing really well with it. Back and forth so I never know which days to stay on top of him and the next day he doesn’t miss a beat. He had waffles for dinner because I offered fish, shrimp, or chicken and he said, “I want waffle pwease”. When the dude makes the request you give what is requested or at least when momma thinks it’s a good idea. He’s been eating really great lately and requesting food so I like to encourage that we have “choices many choices”. Sometimes it’s more about him asking for food or an item than what the choice really is. He is growing and finding his voice. That’s the important part of this journey to me. Never give up. There are miracles right around the corner for all of us. Today has been a great day. The bumps in the road will quickly be moved to the road less traveled. Be inspired by the world around you and make today matter. Smiles to all and donut daze!
“A is for apple these are the sounds the animals make”, Owen said as he pulls up the voice-activated control for me to find it for him. This is the hard part. He knows what he wants, but his words do not always reflect what he really wants. I guess a lot, sometimes getting it right. The thing is most of the time he was watching the exact video he wants me to find. He will close it, coming to me, asking me to pull it up. Some of his words the tablet understands when he is making the request so it gets confused when I’m asking for his words as well. He’s been more interactive with me in the last few days and responding more to my questions. We’ve been working on spelling and sight words. I will show him tiles that have a picture and the word underneath. I have him spell the word while looking at it and then I cover up the letters and make him spell it again. This frustrates him some of the time. He doesn’t want to spell the words without seeing the letters, but he actually does really well with it. There are numerous letters he still has a hard time pronouncing, but he thinks he is saying them correctly. He says the letter J more like an S. So he will say, “sump sump sump” as he jumps on the trampoline. For two months I’ve been working with him to stick his tongue out. I never imagined I would have to teach him how to stick his tongue out and how difficult it would be for him. He’s yet to be able to do it. When he was younger I taught him how to open his mouth and say, “ahh” so if the doctor or dentist asked him to open his mouth he could, but I never imagined he wouldn’t be able to stick his tongue out. I was helping him with his L sounds so I was trying to have him over exaggerate the sound by pushing with his tongue on his teeth. He couldn’t grasp that concept either. I remind myself how far he’s come and that this is the little boy the doctors told me might not talk. Not only is he talking, but he is singing. I am thankful for his voice. Not a day goes by that I don’t rejoice the words spoken to me. I know how hard he worked to find his voice and I praise him all the time for using them. I cherish our victories and I celebrate them big or small. He deserves it. Every step forward is a step. Celebrate our victories and celebrate yours. You deserve the victory dance too. Keep pushing forward. Smiles to all and donut daze!
Today is the first morning Owen hasn’t woken up with me in as long as I can remember. I was trying to be as quiet as I could, reflecting on the days gone by and the day ahead. I heard him get out of bed and his feet hit the floor. But he only made it to the hall. I get up from my seat and he is laying on the floor in a ball. This is a common occurrence. Many times he’s not quite ready to wake up and he will lay down wherever he is. He has no boundaries set for where he should lay or what he should touch. His hands go in his mouth constantly and if not his hands his shirt. He is finally starting to use a chewy sensory ring after years of trying. After a few moments, he got up and went to the bathroom. I asked him what he wanted for breakfast always saying at least two things, and before I could tell him the choices he said, “choices you have choices”. He had waffles for breakfast and then he had a waffle for his snack. Because he has choices and when I asked him if he was ready for a snack he said, “I want a waffle pwease”. Another waffle it was. He has watched the Winnie the Pooh opening so many times he says what’s going to be on the screen before it comes on. This doesn’t surprise me because his memory is long and he can tell me many scenarios from shows he has watched. Standing in the middle of the kitchen, I moved my hair from one side to the other, not even thinking about it. Owen came from the living room reaching up to my hair to pull it off my shoulder. At first, I thought he was coming to hug me, but then his hands immediately went to outstretch my hair. I have to be the picture of me at all times. I can’t change my hair by pulling it up without complete approval from Owen or otherwise it can cause hours of meltdowns. I was getting dinner prepared and I told Owen “I’m cranky”. He said, “no cranky today”. Nothing like being schooled on your emotions by your child. I tried to smile today, but sometimes I want calm and quiet and that generally is not the case. I was singing Old MacDonald in an operatic tone and I was getting to the animal. Owen basically stopped my singing, for good reason mind you, and talks me through the animals. He normally wants me to sing the animals, but I had to laugh because he doesn’t necessarily know how to get me to stop doing something he doesn’t like so he talked me down from the animal choices. He did not like nor does he ever like it when I sing off tune. I don’t have a great voice, but he certainly can tell when I need to stop singing. I laughed more than I cried today, but I was cranky more than I should have been as well. I’m always learning from my sweet baby O and today I learned to be more patient with my own emotions and remind myself to smile. Find your joy, dream of a beautiful tomorrow, and know that miracles can happen if you believe. Smiles to all and donut daze!
I sat crying at my kitchen table. The day overwhelming once again. I try not to cry in front of Owen because it’s so hard for him to process and a lot of times it makes the situation worse, but there I was crying. He’s back to trying to eat my hair again. This makes me sad and I struggle with how to get him to stop. His anxiety seems to be really high the last few days and many of his behaviors are resurfacing, like trying to eat my hair. The more I try to have him do his schoolwork the more it brings out his emotions. He cried more times than I can count for the bus. He brought it up over and over and over again. I tried to explain to him that he would ride the bus again soon, that next year he would be going back to school, but would have a new teacher and a new routine. I wish I could find the right words so he wouldn’t feel like the world abandoned him. My emotions feel heavy as well. As I sat there crying I put my hands to my face. I needed to stop crying, but I wanted calm for my baby. As I pulled my hands away from my face Owen got out of his chair and took my hands, putting them back on my face. He stood next to me for several moments and every time I would try to move my hands off my face he would put them right back up there. He said, “I wuv ewe” and I started bawling even harder. I tell him I love him all the time. I want him to know how much he is loved. I often wonder if he understands the concept of certain emotions and words, but when he tells me he loves me, especially in my emotional moments I don’t have to question it at all. I try to help him understand his emotions and how they work in our world. I tell him all the time we are a team and together we will get through this. He sang a lot to me today, in between his questions about the school, his teacher, and the bus. I keep hoping that if we can get back to any of his other activities that it will at least give him some hope. He’s been playing a lot of his bowling apps and I tell him we will get to go back to it soon. He then asks to put his shoes on and I have to explain to him not yet. One day at a time I remind myself. And these one days feel long and hard. I want my baby to be happy and I want to do everything I can for him. Life is not always easy to explain, but the love sure is. Today is the first day of the rest of your life. Smiles to all and donut daze!
The days can be emotionally, physically, and mentally challenging for both of us. Some days it seems like the skills we’ve worked on for months and months and months and years will disappear or never happen or long be forgotten. But then there is a moment and everything comes together. Owen’s memory is incredibly long. When he was a toddler I would pick him up, hug him with his arms and legs wrapped around me, and then I would count to ten, squeezing him as I was counting to give him sensory input. We would repeat the process numerous times before moving onto another exercise. We had not done it in years, at least not this version. I do more joint compressions and other sensory input now. I walked into the living room and he stood up, got up on his stool, and immediately hugged me. He doesn’t do this a lot so I hugged back and waited to see what he did. He hugged me harder and said, “one two free”. It took me a moment, but then I realized he wanted compressions for his body. I stood there holding Owen in my arms doing the compressions that he craved, counting to ten, and thankful he could tell me what he wanted. He can’t always express what he wants and his vocabulary doesn’t always reflect what he is trying to say. That’s always been one of the hard things for me. I say to him all the time “use your words”. I prayed that he would find his voice and be able to tell me his emotions and likes. It was important to me to keep encouraging him to use his words because I want him to be able to tell me if he ever isn’t feeling well or if there is some other kind of problem. There’s a lump in my throat, thinking of all the tears I’ve cried praying for his words to come. Owen was on a gluten and dairy free diet for years and I feel like that is one of the reasons he was able to find his voice. I think the dairy was a big part of it for him, but I’m glad I made the decision to do both. Every day we are faced with challenges, but as I stood there and held Owen, giving him the compressions he wanted, I realized that yesterday does matter because we grew, we learned, and it’s made us who we are today. I’m thankful that he was able to express what he wanted and that moment was years in the making. Never give up. Miracles happen every day and I know this because I was hugging mine. Make today matter. Smiles to all and donut daze!
Winnie the Pooh was quoted as Owen sat eating his breakfast. And then he started talking about riding the bus and asking to get ready to go. Sadness washed over me as I knew there was nothing I could do to change this for him. I tried to stay on top of my emotions, but tears fell throughout the day anyways. Owen screamed his happy little scream most of the morning. He screams it so that an app he has will record his voice and then it plays it back almost in a chipmunk voice. He laughs hysterically and he’s right back at it again. I’m torn between making him stop or continuing to hear the constant chatter all day. You would think I would be used to it, but there is pretty much not one quiet moment throughout our day. If he isn’t making noise or there isn’t something that he is playing with that isn’t making noise I know I need to figure out what’s happening. When we went for our walk he didn’t like that I detoured instead of taking him to the area I refer to as the computer section so we had to circle back around. He likes to look up at the second story windows and talk about “starting windows”. I’m not sure what triggers this response from these building windows, but he wants to go through the same scenario each time. He was excited to be in his “wittle red wagon” and he said “we’re testing a microphone no beat more bass pwease” as we were walking along and we weren’t even singing at the time. I love how much he thinks about music. I try to encourage him to play his instruments or sing anytime he wants. We watched a banjo player today and he said, ”play the guitar”. I told him it was a banjo. I have a feeling he will be asking for one soon. He has to process it all, but circles back around to everything. Later in the day he picked up his drum and started singing Old MacDonald. He then said, “a few more minutes and ewe play de guitar”. It makes me chuckle when I hear him talking about timing and what he is going to do. I love that he is making that connection to time and practicing. He can’t truly play notes yet, but it’s all coming from his heart and my boy can sing. I know he will figure it all out. There is hope in every part of this process. Believe in hope, believe in miracles, and the rest will follow. I hug my miracle every day. 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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