Some days the chaos seems more simple than I can imagine. Other days they go smoothly by. And some days, like today, was a mixed bag of tricks. Owen woke numerous times last night not exactly happy but when we woke for the day he was very focused and gave me the biggest hugs, wanting to lay with me, being very calm. When he was a little more fully awake I said, “I love you buddy”, kissing him on the top of his head. He said, “good morning mommy I love you”. And he quickly followed it with “tablet tablet”. I told him he had to go potty first but then he could have his tablet. He ran off to the bathroom before I could even stand up. From there it was kind of on his timing. He ate some of his breakfast and immediately started asking for his grandma. He was going to spend part of his day with her and he knew it. I started to tell him we would go in a “little bit” but he quickly said it before I could. He knows his schedule and he knows my words. It’s amazing how many phrases I repeat that he repeats right back to me. As the morning wore on I could tell he was tired. I had a feeling that it would delay our departure to grandma’s house even though it was still hours away that we were leaving. Every time I talked about leaving he would run off through the house. He started playing with “penguins in the box come” and I knew that it would be a process to leave the house. Once we finally did he wanted to drive, well at least tell me how to drive. Mostly screaming at me because of the lights. He spent many hours with grandma and when I picked him up the same thing happened, as it always does, the stoplights bother him. I tried a different approach, telling him that if he wants to go anywhere, ever, he better stop yelling about the lights. I explained that they are how we get to go places and that no matter how loud he screamed they were not going to change. I talked over him every time he was about to scream. I kept saying the same things if you scream we won’t be able to go anywhere. I told him that I truly understand the lights are not fun but we had to go through them. He didn’t scream the rest of the trip home and we shall see how the next adventure goes. One day at a time we will grow together and find our way. My smile came in many ways today but I loved when he sat with his tablet and he kept asking Siri to say, “I want to see grandma please in Japanese” and kept the language train going from there. Never give up on the miracle that has yet to happen. Tomorrow is a brand new day. Smiles to all and donut daze!
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Owen woke up numerous times last night. The first time before midnight. I do not know how I got him to go back to his bed, which he still calls “mommy’s bed”, but he went right back to sleep. I keep wondering if he wasn’t sleepwalking. He woke again a couple of hours later. This time the only choice was sleeping on the couch. Not much sleeping for me but luckily he fell right back asleep once we were on the couch. I try not to talk to him too much because it can wake him up even more and it either causes meltdowns or for him to want his tablet. Neither are great ideas. When he woke to go to school he was happy. He wanted “two more minutes” to do everything but we had the time. He doesn’t completely understand the timing he is suggesting. He will say he needs two more minutes, then go to ten more minutes, quickly changing it to one minute. He knows that if he keeps asking or he thinks telling me he will get his way. Sometimes it’s about him processing what’s happening and other times it’s strictly about the fact that he doesn’t want to go to bed or the potty. The potty has become a problem again, not wanting to go unless he wants to go. He’s done well for months and then here we are at a brick wall again. My sensory kiddo has always struggled with it. When he got home from school he knew it was Friday and for the last few weeks we’ve gone to therapy on Fridays but I scheduled it for other days this week. I like to keep our routine pretty consistent but I also know that as hard as it is I have to change it up sometimes. I have to get him to understand life happens when you have something else planned. Now that sure is much easier said than done. Us not going threw off our whole night and caused Owen to scream at me for hours before he fell asleep. Why, oh why does it have to be so hard on him. He kept asking for all things routine. He wanted to make sure he was going to grandma’s and church and school and therapy and everything else that he wanted in his routine. I never know if I should keep answering the questions and if it fosters the repetitive responses. It’s how he holds a conversation with me as well but it can quickly spin into a meltdown. All I know is I want my sweet baby O to be happy. I asked him again today what he had for lunch and he kept telling me he had shrimp and spaghetti. I can’t imagine he had shrimp at school and he had spaghetti yesterday so I have a feeling he didn’t know what he ate was called or it was all too much for him to process when he was struggling already with his routine. I’m not going to dwell on that. Instead, I’m going to focus on him singing and coming to me for a big kiss on his forehead. Some days we both struggle but I’m thankful for when my son shines. I tell Owen all the time we are a team and together we will get through it all. Find what inspires you to move those mountains. Smiles to all and donut daze!
Pizza, Owen had pizza yesterday. I think pizza may become my all time favorite food ever. Maybe it’s enough to just like the word. That one word has brought me so much incredible joy. My sweet baby O is blooming right before my very eyes. Yesterday he answered my question “what did you have for lunch” with pizza. The win column was already full with the response alone but today his teacher confirmed he had pizza. When I read her words telling me in fact he did have pizza I immediately burst into tears of joy. My boy told me he had pizza. When I picked Owen up from school today his teacher had him tell me what he had for lunch today. He said, “spaghetti”. As the day wore on I asked him what he had for lunch. Without prompting he answered, “spaghetti”. One word again brought tears running down my cheeks and my heart bursting with joy. Two days in a row he told me what he had for lunch. I’ve waited his lifetime to hear him tell me. Being able to tell me something that happened outside of the moment we are in is amazing. It will give him more opportunities to express himself and help with his communication skills. Thinking about this conversation with my son brings tears of joy once again crashing down my face. When I picked Owen up from school we went to his therapy sessions. He had speech, occupational therapy, and physical therapy. The trees were dropping their tiny white flowers and the wind was throwing them everywhere. He said, “the weather's so bad it's snowing”. I was excited about the connection he made to snow but I also heard the words that have caused him stress. He worries about not going to school because of the weather. His school was closed due to bad weather numerous times in the last few months and I would tell him he couldn’t go because of the weather and having him look outside with me to show him why. I love the connection he made but I think about how many meltdowns the weather caused him. I’m going to focus on the beautiful, beautiful progress he is making instead. His language skills are increasing rapidly and it's helped by the fact that he asks Siri to translate more words for him into other languages. Each day his world is opening more and more and his skills are increasing right there with it. He ate his dinner with me, singing Humpty Dumpty in German, and I thought today is a good, good day. Never give up on the hope of tomorrow. What feels like the impossible can become possible if you keep believing. Owen is talking, answering questions, and having conversations with me. That is all answered prayers. Positive words and positive actions equal a positive life. Smiles to all and donut daze!
Two o’clock in the morning is awfully early when one o’clock is when you fall asleep. I could hear my sweet baby O talking but I wasn’t really processing what he was saying. I tried to shake myself awake. And then I heard him say, “Siri buffalo buffalo buffalo in German”. I think I was still in and out but I could hear Owen laughing. Siri must have answered him. I heard his next request, “Siri can you say gorilla in Japanese”. Maybe I fell asleep again but I heard more laughter and more requests. I think I finally realized that it was nighttime and he needed to go back to sleep. I told him to bring me his tablet and that it was nighttime. Owen went back to getting Siri to say buffalo in all the languages. I told him one more time to bring me his tablet, that it was nighttime, and we were going back to sleep. I don’t quite understand why I haven’t figured out that you can not derail a woke up train. He came to lay down with me but there really was no sleeping. He didn’t need his tablet to be able to sit there reciting, laughing, and reciting again how to say buffalo in all the languages Siri translates into. At three and four and five in the morning “buffalo buffalo buffalo in French” is hilarious according to Owen. And to me, it’s hilarious now. Or maybe I’m slaphappy for being up most of the night. He gets so excited about saying the words. He liked when the word buffalo didn’t sound much different than it does in English except for the accent. I’m truly thankful for how much he is learning to say from talking to Siri. His English pronunciations are becoming more clear by learning to say all the other languages. Some of the sounds from the French language are helping him to make the L sound stronger in his English words. He is going for a speech evaluation tomorrow and then will be starting speech classes soon. I can’t wait to meet with the therapist. It will be interesting to see if they can use Owen’s love for the other languages to help foster his growth in English. On the way home from therapy today I asked him what he had for lunch. I’ve been asking that question since he was little. And even when I knew what he had to eat. But today was the first time he ever answered. He said, “pizza”. I don’t know if he did have pizza but I know I’m happy he answered something and even if he didn’t have pizza he answered it with a food. That’s a huge step. I’m going to ask his teacher if she knows what he ate for lunch. When he was taking his bath I wanted to see what he would say when I asked him again. I started with breakfast and he told me he was served “banana strawberry”. I went with it. I can’t imagine he ate either but again he said food. I said, “what did you have for lunch” and he said, “banana and pizza”. There’s no greater joy than hearing Owen talk with me, expressing his feelings “I’m happy today” and having him talk to me about food. These dreams I had for Owen talking are coming true. Every day he’s growing and I know tomorrow will be one more stepping stone for him to move mountains. Expect great things and make your dreams come true. Smiles to all and donut daze!
Some days no matter what I try it feels sad. It took me several minutes and several swigs of coffee to even write the word sad. Owen’s made so much progress but when a pair of shoes is incredibly hard on my baby I just want to melt on the floor with him. Velcro, shoelaces, velcro, shoelaces, zippers, slip-ons, boots, back to shoelaces, back to velcro and, and, and over the years. Why does it have to be so hard for him. I ordered four pairs of shoes hoping one would work. None did. I might try one of the velcro pairs in the morning but it seems like such a struggle for him. He fixates on how his current shoes are tied, or tries to untie them, or screams about them being untied when they are still tied, and the list goes on. Velcro was our go-to for a little bit until the velcro started curling up. Then I tried slip-ons, which was a no-go. Boots didn’t work, sandals are not something we can even consider, flip flops are a flop, and what does that leave, oh zippered shoes and those get immediate screams. The four new pairs I tried were in and out and in the boxes again in less than five minutes. He wouldn’t even try one of them, his other foot pushed two off, and the last one was a grab and throw. I have the shoes sent to my house, I can’t even breathe through the thought of taking him to a store to try shoes on. I keep telling myself the tomorrow will finally come that he is literally comfortable in his own shoes. I can’t buy the shoes in every size because I thought shoelaces would be the answer but then it needed to be velcro and then back to shoelaces, so I wait. That tomorrow will come. It’s like my chant to keep me going. I hear my words coming out of Owen’s mouth but I also hear his teacher’s words, YouTube, Mickey Mouse, and from many other sources. Yesterday, on the way home from his doctor’s appointment, he started screaming at the turn he always screams at. I talk to him about screaming and how we have to respect each other and that we don’t scream. I hope the more we talk about it the less those screams will turn into meltdowns. Well, he screamed, he stopped, he said, “we don’t yell at each other respect” and started screaming again. I felt almost like I was in a Godfather movie. He said “respect” like he had great authority on the word. Some days feel sad, some days feel too rough around the edges, but I try to focus on the laughter we’ve had, the moments of focus and clarity, and his smile. Today he laughed as he learned to say, “buffalo buffalo buffalo in Arabic” and German, French, Spanish, and Russian. He sat on the couch asking Siri over and over again how to say numerous animals in all the languages she translates into. That’s the smile I need, that’s what lets me put down my coffee mug and not cry for a moment, and that’s what keeps me moving forward. Life isn’t always easy to explain but the love sure is. Be inspired and dream big. Smiles to all and donut daze!
Yesterday was Easter. It takes me a bit to process holidays anymore, much like Owen. I can see the progress, I feel like we are one step closer. Letting go of the expectations and embracing who we are is what I had to do. This year feels like we are moving mountains and the progress train is going right up the hill. Yesterday felt like Owen was actually taking it all in and beginning to understand it was a special day. I had to kinda let it all soak in. He asked how to spell “Easter bunny hop hop hop” so that he could look it up on YouTube. It tells me he is thinking about what people have said to him. The connections are flowing. I see it as the ebb and flow of the tide. We had a doctor’s appointment today. We got to the office and I turned the car off. I took the keys out of the ignition and made the phone call to let them know we were there. Owen yells from his seat, “mommy make the phone call”. It was a yell, not a scream so there’s progress. When I realized how hot it was, since it’s no longer those winter days, I turned the car back on. I instantly knew my mistake. He started crying and was upset, thinking we weren’t going to the appointment. I sat trying to reassure him we were going but I knew if I didn’t get him out of the car he would be in a meltdown before I could convince him we were going. It’s in those moments I realize how much he focuses on every single clue I give him about what we are doing. The rules and routine govern our days but my actions are truly part of what influences his reactions. The moment that capture my heart was when he looked up in the sky and started talking about the clouds, he pointed to the clouds. His teacher is working with him to understand what he is wearing and the colors of each item and for years I’ve talked to him about having pictures on his clothing but he has never focused on what he is wearing, only what I was wearing, until today. He looked down at his shirt, pulling it out a little, and realized what was on his shirt. “Eieio that’s old MacDonald”, he said. His shirt had little barns and animals with the letters separated on it. That is beyond amazing. My wildest dreams are coming true for my sweet baby O. At dinner we sat together, eating fried bologna, adding another new food to ones he likes. He was very focused and confidently spelled numerous words. “Key k e y”, he said and continuing with, “kick kick a ball k i c k”. He moved on to spell newt and nose, “newt neee” but he said it with authority like it was correct and quickly spelled nose the same way. I’ll take it. The rollercoaster ride of life is full of twists and turns but the joy from those ups sure makes the downs a distance memory. Grow from yesterday and lean into tomorrow with a new hope. Smiles to all and donut daze!
I wanted to eat breakfast and have a conversation with Owen. We slept a little later but we were up off and on all night so I guess it all washes out. He said good morning to me and then “let’s go potty time to go potty tablet tablet”. He focuses on the end result and then will repeat it. I think some of his repetitive behaviors and words are associated with the lack of his communication skills. To promote conversation I try to find things that work for him. Languages, my boy has mad language skills already and every day it seems like his words are growing. I knew that he would be more likely to talk with me at breakfast if I brought Siri into the mix. I asked Siri, “how do you say I want waffles and butter in French”. Owen’s smile lit up as Siri rambled off the words. I hadn’t used the word “please” when I was asking her so as soon as she finished he said please in French. I chuckled to myself, I’m teaching my boy manners in all the languages. I move on to German then Arabic and each time he said please in the different languages. I was thankful he sat with me answering my questions about the languages and saying the words as we went along. He asked me for help with one of his new apps. Instead of tapping the screen, you were supposed to adjust the entire tablet to move the character up the tree. He needed to hold it with both hands and shake it to move it. He wanted to use his fingers. He doesn’t have that concept down and there is a disconnect on how his hands move. He is only now starting to understand how to wave bye-bye to someone and he will still turn his hand towards himself, generally like what a toddler would do. By the end of the day he was understanding it a little more but he still wanted to use his fingers to jump the character upward. It’s amazing to watch him move his fingers across a screen but we are still working on the skill of counting to ten using his fingers. It will come, I have faith. Well, the answer to the question about toys and the rollercoaster is he knows what he likes and doesn't like. I got him a race car rollercoaster similar to the penguin one he requested. As soon as I turned it on he came running from the other room. “Turn it off”, he yelled. And kept yelling. I said do you like it and he replied, “nopedy nope”. The good news I know he can tell me what he doesn’t like and he is learning to tell me what he does like. Never give up. I often remind myself this is the little boy doctors told me might not talk and look at how he is doing now. Find your strength, push forward, and look for the hope of tomorrow. Smiles to all and donut daze!
Today felt like that slow victory with a side of tired preparedness and anxiousness all mixed in with some “are you happy today” moments. In other words, it was all over the map. Owen slept a little later, woke up a little calmer, and quite frankly handled our internet being out better than I could imagine. The last time our internet was out he was crying and downright agitated. The meltdowns were right on the surface. Today he let me talk on the phone with the support specialist and he was interacting with him by mimicking what I was saying. This, instead of yelling was a refreshing change. It was many, many hours before our internet came back on but thankfully Owen went to visit grandma for the afternoon. Before we left I was trying to distract him from not being able to talk to Siri. He kept asking her how to say something in all the languages but she kept telling him she was unavailable. I asked him if he wanted to help me paint the backgrounds of our paintings. He said, “do you wanna paint an Easter egg”. My heart exploded with joy and sadness at the same time. Yesterday he sang, “single bells single bells single all the way” and today he watched Halloween shows and now talking about painting Easter eggs. I might need to fix another cup of coffee to get through those emotions. I feel like we are one step closer for him to be able to understand each of the holidays and their significants but I still get emotional about how hard it can be on him. I wish I had gotten eggs for him to dye. I hadn’t even considered it. It’s such an emotional journey. The expectations of what a holiday shoulda, woulda, coulda been sit heavy, knowing that routine and order outweigh the excitement of a holiday for him and he doesn’t grasp them yet. But my hope is on tomorrow, my hope is for his future, and my hope is in knowing that when’s he’s ready I will do anything I can to help it make his dreams come true. Owen fell asleep quickly tonight. He hasn’t been quite himself all day. The anxiety of his days and routine being off are not helping him process his emotions. Learning to adapt is not always easy but knowing that my sweet baby O is happy is what matters. Autism is as much about how I handle it as it is about Owen having it. Maybe we can still dye Easter eggs tomorrow. Learning to let go and not be hard on yourself, well, it can be hard. But be kind to your own heart, learn and grow for tomorrow. Smiles to all and donut daze!
Even in quiet it feels like a roar around us, there’s always an emotion that’s waiting to escape. Today was mostly a good day with a side of anxiety mixed in for both of us. When Owen woke he was calmer than he was when he went to bed but he immediately wanted to know when we were going to his doctor’s appointment that was almost twelve hours later. Telling Owen his schedule is a good thing and a hard thing. Giving him his schedule helps him keep track of his days and promotes his future independence but for now, it creates an obsession about that moment in time. He repeats the same words over and over again trying to create a conversation that he truly doesn’t know how to have yet. When it was finally time for us to go to his appointment I started talking to him about sentences he could use instead of repeating his doctor's name. I told him that he could express his feelings about the appointment and getting to go. He loves going to his therapy and seeing everyone there. I practiced going over the words with him breaking them down as we drove. I was also trying to fill in as many words as I could that did not give him time for him to scream about each and every one of the traffic lights. My own anxiety runs high every time we get in the car because I’m waiting for him to yell at me. He did great at his appointment but on the way home his “shoe is untied” became the fixation of the moment. This has been going off and on for years. We go back and forth between velcro and lace-up shoes. Velcro works for a while until it starts to curl and does not stick as well. Once this happens he has to pull it up and down trying to get it back on the right spot. And I can still hear all the squeals from his frustration when it would not lay flat. We’ve tried other styles and each one has something that he will become fixated on after time. On the way home, he kept telling me his shoe was untied. Generally, he unties his shoe or he shakes his foot until it unties. Today he took his shoes off and then he yelled about taking his shoes off and then he yelled even louder about me putting his shoes back on. I breathed. How do you stop a moving train when you are in a moving car, you keep going. To lighten the mood I asked him if he wanted me to stop to put it back on. Okay, so that created more yelling. “Homma”, he yelled, “hommmma”. I told him if I didn’t stop he wouldn’t get his shoes back on until we got home. Either way, I was not stopping. We had less than fifteen minutes and we would be home. The next great decision I made was to not put his socks on him and only put his shoes on to walk to the house. All we had to do was walk in and off they would be again. Let’s just say that didn’t go according to plan. As the night wore on he asked me to take his bath and go to “sweep”. Well alright, let’s go I said. His reply, “two more minutes”. The highlight of my day was hearing him talk to Siri, asking for one thing after another. His voice is getting stronger and every day I see growth in my sweet baby O amidst the struggles he has. Never give up. Each day there is a lesson to be learned and a story to grow from. Find your happiness in the smiles that surround you. Smiles to all and donut daze!
My sweet baby O knows his schedule backward and forwards and every other direction and in between. And then along comes days like tomorrow. It’s Friday. School’s not supposed to be out. School is absolutely not supposed to be out on Fridays. For that matter Mondays, Tuesdays, Wednesdays, or Thursdays. It’s routine five days a week, every week, forever, and ever amen. Tomorrow and Monday are both days off for our county. All I keep thinking is thankfully it is only two days instead of the week they normally would take for spring break. I do not like breaks. Because he does not like breaks. My heart aches for my child. Owen screamed all night long and then cried himself to sleep. When we got home from his therapy today he immediately started talking about not seeing his teacher. And pretty much was glued to my hip, needing the reassurance of what his days ahead would be like. This little break in his routine manifests itself as one behavior after another. I can’t even think about it. It’s exhausting and he doesn’t get why he has breaks. The older he gets and the more he becomes aware of his schedule the harder it gets for him. And right now nothing is certain with our routine and could still change. I know that’s life but trying to explain it to Owen is beyond difficult. His internal clock knows what time and day it is. I try to block out the memories from last year when the pandemic started because the screams, crying and meltdowns where never ending. I spoke with his teacher today about planning how to get him transitioned to summer. There are not enough sips of coffee to keep the tears from flying out of my eyes. It’s still months away and it’s all I can think about. So I pray. Our support team and therapists I know will help to work through this with Owen but it’s still hard for me to see him hurting. I’m going to focus on him singing Humpty Dumpty to me in French and asking for veggie straws and milk in Korean. There’s no stopping my sweet baby O. He’s going to move mountains. Through the struggles, we grow and tomorrow is a brand new day. Set your sights on your dreams and watch them come true. 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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