I had to look to see what day it was. I can’t wait for bedtime, but oh how I dread bedtime. I want to go to sleep. I think I wanted to go back to sleep as soon as I woke up. And I think I was over this day way before Owen even woke up. I woke cranky. I didn’t dare tell him this because he would say, “no cranky today”. Although the reminder would have been good. Some days are emotional. Owen spent a few hours with his grandma today, oh the adventures she did tell. When we came home he immediately ran to the potty as soon as I opened the door. He yelled over his shoulder, “need to go potty”. Good news he sorta made it. I got him changed and off he went to the living room. I walk in a few minutes later after cleaning up the bathroom and sat down on the couch. As soon as I sat down Owen started making noises. All I could think was rush him back to the bathroom and I was thankful I now have a washable rug. I can’t tell you how many area rugs we’ve been through. I keep telling Owen I love him. I want to see his smile and focus on that. It’s pretty much what’s getting me through the day. It took him hours once again to fall asleep, flailing around the bed, knocking his lamp off his nightstand that really wasn’t even close to the bed, yelling and kicking me,and then pushing so hard on his bed rails they came loose. In the last few weeks, it seems harder and harder to get him to go to sleep. The things that worked before don’t even touch him and the new supplement seems to make him even more hyper. I held him, I did his compressions, had music playing, and no electronics, but nothing helped tonight. My heart aches. I close my eyes and think of his smile. I dream of a calm tomorrow. I pray for him to rest tonight. And I’m thankful for how far we’ve come. Life is not always easy to explain, but the love sure is. Let yesterday go, focus on the bright spots, and know that tomorrow is a brand new day. Smiles to all and donut daze!
0 Comments
The squeals and squeaks started early this morning and carried throughout the day. Some happy, some mad, and some because he wanted to see my reaction when he would yell directly in my ear. I have been trying to continue to work with him on spelling, reading, and math since school was let out what now seems like an eternity ago. Today spelling was not what he had on the agenda though. I asked him to spell his name. He quickly spelled it, “O W E N”, loudly but very calmly. It was probably calmer than he normally does it and definitely louder. I moved on to the next request of the word “ball”. This is where he was done. Not only did he not want to spell the word he didn’t want to think about it either. I forged ahead. I sounded out every single letter even though he knows how to spell it perfectly. We went through five or so more words all met with a resistance that Star Trek and Star Wars fans could debate as to which was stronger. Then I got the brilliant idea to watch a movie with him. At this point it wasn’t even 8 o’clock in the morning and movie watching was not what he had on his agenda either. I made breakfast. Breakfast became more of a snack time meal, but hey he ate. The day was going along swimmingly, albeit loudly until our power went off for about ten seconds when a storm came through. That caused our internet to go out which caused Owen to be on the floor screaming about the lights which were already back on and the internet reset quickly too. It’s so hard to explain to him why the electricity is out, even for those brief seconds. The night concluded with happy and mad screams and he finally drifted off to sleep. The new supplement and the relaxing music don’t seem to be helping yet either, but we’ll try one more night. One day at a time. Through tired eyes, I grow. There’s no greater blessing than being Owen’s mommy. Tomorrow is a brand new day. Find your strength, push forward, and love with all your heart. Smiles to all and donut daze!
The day felt lazy to me. Owen was watching his tablet on the tv. Technology always amazes me and what’s even more amazing is how he can figure it all out. And seemingly quicker than me. He, however, doesn’t understand that I also have a remote control to the tv on my phone. When he turns it too loud I turn it down now. But what I seem to not get is that just frustrates him and he turns it up louder. The give and take of it all. He listened pretty well today, for the most part at least, but he still wants me to follow all his rules and not follow all of mine. Sitting at the kitchen table is not something he wants to do or can process to do. He sits for a few moments and then he jumps up and wants to run. As it is food still gets flung everywhere, but when he eats and runs it’s hopeless. I just breathe. He is getting more and more agitated about my phone. He doesn’t want me to make any calls, watch any videos, or look at something if he is near me. This seems to be something that has increasingly gotten worse in the last week so I don’t know what is causing the extra anxiety over it. I’m trying a new sleeping supplement with Owen. So far there was no change. Extra yawns started off the night, but yawns quickly turned into hysterically laughing, and two hours later he finally fell asleep. My heart aches in these moments. He was all over the bed, throwing himself around like a rag doll, pushing his whole body into his pillow, screaming as the night went on. He’s getting stronger all the time. I pray for calm for my sweet baby O. I pray that he will find peace through the night. And I pray for his communication skills to keep growing so he can help me understand. This momma is tired tonight, not feeling my best from my own things, and wanting, hoping, dreaming of a great tomorrow. I remind myself of where we’ve come from and I see progress even through tired eyes. He played his guitar, keyboard, and harmonica without me promoting him at all today. There is great joy in my heart knowing how much he loves music. Never give up. The rain may pass through our days, but the sun will shine again. Rejoice in your victories no matter how big or small. Smiles to all and donut daze!
It feels like my heart beats out of my chest sometimes when I watch Owen struggle to go to sleep. I want to hold him and make it all better. It’s hours of his flip-flopping around his bed some nights and still no peace. We have moved on to the next supplement, hoping this will be the one. He’s like his momma having different types of reactions to things we’ve tried over the years. Supplements that are supposed to bring calm do quite the opposite for him or it only works for a few weeks and then it stops. It seems the more exhausted he is the more he fights sleep. I guess that’s like his momma too. He had a really good day though. He only got upset a couple of times with varying levels of intensity. He went to visit his grandma and on the way there he got mad because I didn’t get him “chicken nuggets and french fry”. We passed the restaurant and from there he decided to express his displeasure for me not get the requested food. It was nine o’clock in the morning and I already knew he would be going for lunch to get them, but he didn’t understand this. He loves to watch videos of people ordering chicken nuggets and french fries. I’m always shocked at how easily he finds videos of what he wants. Sometimes he will ask me to pull something up with the voice-activated option, but most of the time he randomly finds it. I tried hard to convince him not to touch my hair at dinner. But then he decided he wanted to touch it more. This is the way the ball bounces. When I bring attention to anything I want him not to do that is actually the green light to make it his priority. That’s the kid part. The part that’s hard to explain to him is that I don’t want his dinner in my hair. One day at a time I remind myself and I think fish oil is supposed to give a nice shine to your hair. We love, we grow, we learn, we grow some more. Today is the first day of the rest of your life. Let yesterday go and be inspired by the journey yet to come. Smiles to all and donut daze!
I saw such clarity in Owen’s eyes today. That doesn’t always happen. Some days no matter how hard I try he can’t process what I’m saying to him. However, his clarity means I was on my toes most of the day and on lack of sleep to boot. He was full of energy from the minute he woke up. His stimming was in full motion and I hadn’t seen him quite this active in a long time. He will watch the same parts of a video over and over and over again, miraculously able to go to the same spot almost every single time. He was watching the Mickey Mouse Clubhouse and he was on sensory overload. You can’t derail the train either. I learned that lesson years ago. If he needs to process something it doesn’t matter what I do to distract him he will go right back to the same action when I’m done. Years ago he was doing about the same thing, watching a video over and over again, but instead of happy squeals, he was crying. I thought after thirty minutes I needed to find a way to stop him. I brought him to me looking at other videos with him, singing songs, and anything else I could think of. As soon as I stopped distracting him he went right back to the exact same spot on the video he was watching before. The same screams, tears, and emotions were being poured out again. He had to work through those emotions and then he moved on. Nothing I was going to do was going to change this. It took me a while to understand it all, but now I try to let his emotions run their course unless I know it’s leading to a meltdown, and then it’s a whole different agenda to try to get him to move forward. He screamed himself to sleep, happy squeals that seemed octaves higher than his normal voice. I prayed he would find calm and within a few moments, mid-scream, he was out. It takes me a while to calm down after a day full of his emotions. He wants me to follow all his leads, not play any noises on my phone, and he wants it all in his timing. But we had a good day. He’s growing, we are learning together, and I’m finding ways to have a middle ground for both of us. Never give up. Miracles happen every day. My miracle puts a smile on my face and a song in my heart. Make today matter. Smiles to all and donut daze!
Some days I wonder where my little baby went. Owen’s growing so fast. I’m thankful for his growth and the connections he is making. I’m always amazed at how he puts concepts together. And we have been on a potty train success story for the last few days. Some nights when he is almost asleep he says “need to go potty” and I feel like he is going to avoid sleep, but I never want to tell him no when it comes to him going. Tonight’s one of those nights that it was both. He went to the bathroom and then the countless trips after were more about keeping the night going. Then the milk request came in. He answered himself though. He asked for milk and then he said, “ in de morning”. He always has a “sip of milk” before bedtime. His sip of milk sometimes turns to a guzzle-fest so that might be why he is running to the bathroom so much. I try not to have his cup full at night, but some nights it doesn’t seem to matter he goes to the bathroom a lot anyways. Not even a year ago he was still in diapers so this still feels like a glorious victory for him to be asking to go to the bathroom. He hasn’t had to go during the night in months. Pull-ups were confusing to him because he thought he was still wearing a diaper. Now I use a liner shield for him and no more accidents and now it’s not hard on him to adjust from day to night. Some days, even through the struggle, I focus on where we are today. There are so many emotions that sit in my heart when I think about my sweet baby O. The journey has been full of twists and turns, but the joys of seeing Owen’s accomplishments are miracles each and every one. Through his eyes, I’ve learned to appreciate life and I know that he is filled with strength and determination to succeed. Count your blessings, celebrate your victories, and let the world see your smile so they can rejoice with you. Smiles to all and donut daze!
Owen ran with his tablet in hand. He gave it to me saying, “plug it”. He started to run away, but turned around as I was not getting up fast enough to plug it in. There can be no delay from the moment he wants something and the moment I actually do it. I’m not always that fast and I maybe in the middle of something. He came back to me, repeating the request, almost like a demand this time, but he added, “pwease” to the request. I explained to him again that mommy can’t always do things immediately, even if he wants it done quickly. I know that concept will come one day, but it’s certainly not one he gets now. I sat down at the kitchen table and before I could even think about what I was doing Owen ran back into the kitchen. I was playing with my hair, twisting it into a knot on the back of my head. Instant meltdown. I wouldn’t let him pull it so he got even more upset, this time running away from me. I told him to come here and he started saying, “comb hair”. I’m always amazed at his wording and how he makes connections. I repeated for him to come to me. I wanted to try to work through my hair being up with him, but today was not the day. I’ve been trying to get him to understand that my hair can look different, but it’s still of great concern for him. One day at a time I remind myself. Autism is as much about how I handle it as it is about Owen having it. As long as the boat was not rocked Owen was having an excellent day, so I kept moving forward. Some days feel harder than others, but easier when I remain calm and that gets me through our days. He can read me like a book and he knows how I feel sometimes before I even realize I’m being emotional. He played his guitar for me and sang many songs with me. The laughter outweighs the tears and the joy from seeing my son shine makes my heart sing. Follow your dreams, be inspired, and know that you can do great things if you set your mind to it. Smiles to all and donut daze!
Sometimes you just got to breathe. Owen chewed another hole in another shirt. He goes through at least three or four shirts a week. Sometimes they aren’t so bad that he can wear them for nightshirts, others the holes are so big there’s not much left to them. I have tried different types of chewing devices and accessories but cloth seems to be his choice. If I don’t keep a shirt on him he will bite the blankets, pillows, couch, or anything else cloth he can find. He needs the sensory input. He acted like he was not feeling good this afternoon, but by evening he seemed to be much better. That’s still one of the hardest parts of this journey for me. I want him to be able to tell me his feelings, his emotions, his wants, and his needs, not to mention his dreams for tomorrow. I was never so thankful when he started making the connection to those Five Little Monkeys that kept jumping on the bed. He would sing the part, “momma called de doctor and de doctor said” when he wasn’t feeling well. I rejoiced the connection. I told his doctor that in itself was so emotional for me because I am rejoicing the fact that my son is able to tell me he is sick. But it was the only thing I could grasp onto when he was truly not feeling well he would sing the song. Now he doesn’t always sing the song, but he phrases it like I would be saying it. “Does your head hurt”, he will say and sometimes he still doesn’t understand what he needs to explain to me. It may not be his head that is actually hurting, but that’s all he knows how to explain. This momma prays a lot. I held him as he fell asleep. I started the bedtime routine early tonight, hoping he would get some much needed rest. Luckily he was asleep within an hour instead of the two or three it normally takes us. His laughter filled the air tonight, even as he drifted to sleep. I’m thankful to hear those belly gut laughs and they make me smile. Find a way to push through your sadness and let your gladness take over your soul. Today is the first day of the rest of your life. Smiles to all and donut daze!
If you’re happy and you know it sing Old MacDonald. “No way”, Owen said as he sang about putting a kangaroo on the farm. He puts all animals and vegetables on the farm at some point, but he always adds no way when he doesn’t think they belong there. And sometimes for good measure and maybe a laugh. He’s had a very calm day. He listened for the most part and when I corrected him on something he didn’t have a huge meltdown. I worked with him on answering questions. This is something that is extremely difficult for him. When he woke up this morning I asked him what his name was. It took him years to make a connection to his name and to be able to answer what his name is. Now if I don’t ask him every so often he won’t answer me. I know he hasn’t forgotten his name, but it still takes him time to process it. I worked with him on other questions as well. “How old are you, Owen”, I asked. Then I would say exactly what he was supposed to answer. I questioned him about his favorite food too. I always say his favorite food is veggie straws, but I wonder now if it’s shrimp. Throughout the day I asked him these questions over and over again. Sometimes he would reply, other times scream or run away. I still felt like it was progress. I tried to stay ahead of our emotions today, trying to not rock the boat, and keep him focused and learning. He worked on several of his school apps and I wondered if he was thinking about school. I can’t even imagine how this next school year is going to go and it already breaks my heart knowing if he is not in the classroom it will be extremely hard for him to learn online. One day at a time I remind myself, knowing I can’t change it, and he has to be safe as well. He struggles with seeing people in masks so we really don’t go to many places that he will encounter people. And he doesn’t want me to wear one so that also limits us. His laughter pushed any thoughts of sadness away. I am thankful for his smile and that he listened to me because that means he was able to focus. Rejoice in your victories, share your story, and know that you are important. Smiles to all and donut daze!
I had to stay on top of my emotions today. I wanted to cry multiple times. But I wanted Owen calm even more. He was all about my emotions too. Any change in my tone and he was all over me. “Hi buddy”, he said. With those words, I know I need to be calm. He is using my words to distract me, to focus me. He doesn’t want me to cry or be emotional ever. He can tell a change in my emotions quickly as well. I tried not to let things get to me, but I woke up cranky and exhausted, my body tired before I even got out of bed. Owen ate a lot today, but with that means there is food everywhere too. I can’t convince him to stay seated through an entire meal. And I certainly can’t convince him to take a bite, put his food down, chew, pick up his food, and take another bite. I sang the song again, shrimp to the left of me, shrimp to the right, stuck in the middle with you. It’s like he is performing a magic trick with his food. It gets rolled from finger to finger, across his face, and sometimes even in his toes. I breathe. I have to remind him to take a bite and put his food down, but sometimes I want to sit and talk to him, ask him questions, and then I breathe some more. During the numerous times he gets up he wants to hug me. This means shrimp in my hair. I try to convince that’s something he also doesn’t do, but he doesn’t get it. And then there I am emotional again because I’m telling my son to sit down and I don’t want him to hug me because I’ll get more shrimp in my hair. I try to teach him rules, but no rules apply unless it is his rules. I walked to my porch, Owen came to the door. He could see me. The only thing that separated us was the glass door. He could have stood on the porch with me and I literally was putting something on the front porch and coming right back in. He started throwing things. He screamed. I stood ready to come back in and there went his tablet flying. My heart aches. Some days it doesn’t bother him if I walk into another room or outside, other days it causes meltdown after meltdown. And again I breathe. I told him if he threw his tablet again he wouldn’t have it. He tune quickly changed and I got a hug as soon as I walked in the door. He was very happy in general all through the day. A few moments in time where the rules were bended when they probably should have been stricter, it’s one day at a time. I run from my emotions most days, but today they were heavy. For the love of Owen I’m growing and each day I try to remember to be kind to my soul. He fell asleep quickly and said, “I wuv ewe”. Nothing else matters. My heart is full and his laughs were big today. Push through the sadness and find your gladness for tomorrow is a brand new day. 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
March 2024
Categories |