How much screaming can one do and scream about not screaming I wondered. The answer is always a lot. Owen seemed very tired today. Happy but still tired. He slept a little bit later but it’s not late enough when you are awake several times in the middle of the night. Back to the sleep drawing board. I would give anything to find something that works for him. I always think I’m on the right trail for him and he quickly builds a tolerance. When he did get out of bed he was ready to get to school. We got to the bus stop and he immediately wanted my phone. He asked Siri for “gorilla noises”. He laughs every time they come on. He went through a whole selection of phrases, asking her to say them in mostly Russian and Arabic, occasionally asking her to translate into kangaroo. When the bus turned the corner pure joy washed over Owen. He jumped up and down doing this happy dance. There is no greater joy than seeing him so happy about riding the bus. Knowing he loves school, his teacher, and his friends makes me want to do the happy dance too. Today was therapy day. So not only did he get to go to school but he also went to therapy. He couldn’t wait to get there. Besides all his driving directions for me on the way there, he told me all about each one of his therapists. He also knew that he would see one of his friends that goes at the same time. When we were waiting for our turn he saw his friend. I love that he is learning to have a conversation with someone his own age. The process is coming but how to talk back and forth is not there yet. The progress is outstanding though and to hear him speak so clearly and with purpose is amazing. I am so thankful for his words. This evening when we got home he was talking to Alexa. Occasionally he would bring his tablet to me but for the most part, he was getting her to respond with exactly what he was asking her. Tears float in my eyes from the joy this brings me. I know how hard he works every single day to get those words out and his point across. This was my dream for him, my hope for his future. He struggled with bedtime once again. He gets himself so incredibly worked up over his blanket being on him. He screamed about it for twenty minutes and when I thought he was asleep he popped up and started screaming again. He fell asleep laying next to me but my heart aches knowing it was such a struggle for him. I’m waiting to hear him come around the corner any minute. It seems like he is waking up earlier and earlier after he goes to bed. Even though he had a few rough moments I did see a change in him responding to my requests of no more screaming. Several of those instances then turned into his next favorite pastime of stomping but at least he listened when I told him to stop screaming. We grow, we learn, we love. Find your happiness, share your story, and go after your dreams. Smiles to all and donut daze!
The repeat train has left the station and then the repeat train left the station again and then the repeat station left the train but we are working on it. I totally understand Owen needs to express his emotions and verify his routine, especially when routine isn’t always routine anymore but I also need him to understand that he can’t be upset with me if I do not reply to every single reference of his teacher or what is happening the next day. Some days it doesn’t happen as much and then other days he gets upset and throws himself to the ground or yells his teacher’s name in my face until I reply. Distraction works better for one of us but we are working on that too. Owen has a memory that is long and he truly doesn’t forget one detail. He may not be able to express it all but he sure doesn’t forget. When I try to distract him or give him cues to move forward from his repetitive behaviors he will still go back to his actions after we have completed the activity that I tried to distract him with. As the night wore on he became happier and more interactive with me until I tried to ask him questions. This is also hard for him. Processing a question and replying with an answer can take him a while to do. Sometimes the questions I ask don’t seem to register with him, other times it is more like a nuisance to him and I should already know the answer. I asked him if he would like some cheese. He completely ignored me. Generally, if he does want something he will say “yes” but if he doesn’t want something I have offered he will scream “no”. However, if he is in another room and I call out to him to answer he will not always reply. Today was filled with all of those moments and a very anxious Owen. He was ready for his Thursday that he kept calling Wednesday the moment he got off the bus. The bus driver told me he was a little more anxious than most days and I knew it was because we didn’t sleep very well. Tomorrow he will go to school and therapy so hopefully, that will help confirm his routine. I finally remembered to put batteries in his singing sharks and he was happy to once again have them in the tub with the song. His new thing is to get out of the tub and weigh himself. It’s a talking scale so when she says his weight he laughs and then runs off to the bedroom. I think laughing is my reaction too when I step on the scale. Bedtime was filled with more anxious moments for him, screaming “blanket please” but he fell asleep in my arms singing a Christmas carol. My heart aches for him on the more difficult days but I remind him he is amazing and can push through it all. Love with all your heart, smile through your day, and know that you are not alone. Smiles to all and donut daze!
I had just fallen asleep last night and a very sleepy Owen walks into my room. Luckily the very sleepy part won for both of us. Now mind you it was one o’clock in the morning but I think we slept the rest of the night if you call sleeping until five in the morning the whole night. He woke telling me to “sit” and I was like dude we aren’t even out of the bed yet. He woke with a goal though, to go to “school school school”. I am beyond thankful that he loves going to school so much. Knowing that he goes to a place he loves truly fills my heart with gladness. He has a great support system there and you can tell these kids are thriving. His teacher fosters his growth and truly cares about her kids. When he came home from school he was pretty calm. He ate a big snack and asked for more but we have to work again on the manners. Instead of asking in the form of a question, he will blurt out what he wants. Like he will only say “milk” now. It’s funny though he will ask Alexa how to say “I want chocolate milk please in Arabic” or numerous other languages and can say them all. He gets the biggest kick out of getting her to say phrases in different languages. He laughs though trying to get her to translate a phrase into an animal. He will say “I want a banana please in kangaroo”. He thinks it’s hilarious when she says, “I can’t translate into kangaroo yet”. We worked on a few behavioral issues tonight. He had to give up his tablet for the rest of the night because of them. I can tell you this choice is always harder on me than it is on him. He gets right in my face to voice his opinion and then the repetitive behaviors come out, add in screaming and that’s about what happens. Although I will say tonight after about twenty minutes he calmed down, sat on my lap, petted the cat, and then let me cut his hair. His hair being cut is getting harder and harder for him. I’ve never taken him to a salon to get it cut, I’ve always done it myself, but it might be a good distraction for him to try and have someone else do it. He yells out “scissors it’s a lawnmower” when I get close to his ears. I’m sure the noise is amplified with his sensitivity to sound and his feelings. It’s never been an easy process for him but I can see the changes in him especially in the last few months. Sometimes I think he is also learning to express himself more with his words and emotions so he then can tell me more about his experience. I longed for the day he could talk and his words came. He still struggles to make all the connections to his words but now I at least know he can tell me in general if something is wrong or his basic needs. Even through the days filled with emotions, I reflect on how far we’ve come and I am thankful. Never give up. Every single day miracles are happening. Smiles to all and donut daze!
On Saturday Owen did and didn’t and did want to go bowling but ultimately we didn’t go when he started saying he wanted to go home instead of the bowling alley. When we got home Saturday he told me he wanted to go bowling today. I’m not sure how he picked Monday but I told him we could go. I didn’t know once Monday came if he would still want to go but I thought we would try. When he came home from school I fixed him a snack and then before we could go bowling we had an errand we had to run. He did beautifully with that and then off to the bowling alley we went. To say I had to push through the moments in the car would probably be a huge understatement. Between his screaming and worrying about the weather, a fifteen-minute drive feels like I’m on a rollercoaster, eating pizza, trying to not spill my drink that I’m not even holding while waving to an octopus that is in another car. And then we spell for distractions. I’m not sure if the spelling is to distract me or him but it really doesn’t work for either of us. But hey, the good news is we got all the way to the bowling alley and we actually bowled. He had a great time and for the most part was calm except for a couple of moments when he got upset that all the pins didn’t go down. “That’s bowling”, I told him. He repeated his teacher’s name the whole time we were there and asking about his grandma. Going on a day that is out of our routine was extremely hard on him to begin with, but he did well with it. The ride home was a whole other story. I wish teleportation was an option. I know that some of his behaviors are learned, some are emotional, and some are reactionary, then add in how he wants to see my emotions and it is a whole other ballgame. One day at a time. I keep telling myself this is a phase and we will move forward. Once we got home he did great and ate a huge dinner. Bedtime even went quick and hardly screamed about his blanket. I count my blessings and our victories. We got to the bowling alley and we bowled, on a Monday. He gave me many hugs today and a huge kiss at the bowling alley. My heart is filled with joy. Through challenges, we grow and with time we learn a new understanding of the world around us. Be inspired, be the change. Smiles to all and donut daze!
I supposed we kinda slept last night but Owen sure woke knowing exactly what he wanted to do. “Church church church”, he sang out. I told him it would be a few hours especially since it was barely six at that point. He struggled with screaming at me today. Or maybe I struggled with him screaming at me today. He was in a good mood but he still managed to get himself in numerous tizzies all day. They weren’t exactly meltdowns, they weren’t exactly tantrums, they were tizzies. He was worked up about his days ahead. The uncertainty of everything causes him to have bigger emotions than he can handle sometimes. He walked around touching everything saying, “that’s a”, wanting me to explain to him what everything was even though he knew what everything was. If I didn’t answer he came to me and was an inch from my nose asking me “that’s a”. This went on for about fifteen minutes before he moved on. Then next up it was screaming about his blanket. He likes to sit on the couch with his blanket entirely covering him but then he sits there while it’s entirely covering him screaming about wanting me to put it on him. “Blanket please”, he yells and before I can say anything he continues screaming, “it’s on you”. He kept screaming it. I don’t know how to stop the train. I take the blanket and work with him to move him on to something else but if I don’t let him have his emotions he will come back to it like he did today when he went to bed. He immediately pulled the covers over his head and started saying the same things. “Blanket please blanket I want the blanket blanket please”, and on and on it went until he fell asleep. All I can do is hold him and pray for comfort. Earlier I was eating watermelon with a spoon and I thought back to my childhood when I hated watermelon. When I think back to that time it was more the fact that I hated the watermelon juice coming down my arm when I would eat it from the rind than me actually not liking watermelon. That was how come I didn’t like a lot of foods. Barbecue was too messy for me because I didn’t want to touch it but instead I said I didn’t like it because I didn’t know how to explain that. I thought about how Owen eats his food after I swept up another huge pile of food that had fallen to the ground as he was eating. He breaks his food in his hand and crumbles it making food go everywhere. Like me when I was little I didn’t know how to eat certain foods without touching them and he will scream if he has to smell, look at, or touch certain foods. I’m learning to adapt what foods I give him and that way he tries more variety. I’m thankful he gets to see his beloved teacher and classmates tomorrow and from here we keep moving forward. I keep telling myself you can continue to be or grow and do. Find your strength and keep moving forward. Smiles to all and donut daze!
Ease Into Saturday
Some days the emotions start as soon as you open your eyes. Other days they pour over you like the rain falling from the skies. Owen clings to routine, thrives on routine, needs his routine. And the spiraling effects of no certain and concrete routine can be devastating to him. No school on Friday meant him asking for school all day on Friday. “Be with mommy”, he said when he wasn’t repeating his teacher’s name. All of this leads to him once again not sleeping through the night. He needed to go to “grandma’s” today and he made sure I knew it at two o’clock in the morning and three and four and five and pretty much until we walked out the door. He spent a few hours with grandma and then I went to pick him up. This is where more overthinking takes place. He said he wanted to go bowling and then he told me he didn’t. There was an event at a church near us for kids to be able to interact with first responders. I knew Owen would have a hard time with it but I thought he might like to see all the vehicles leave. I decided to take him by the parking lot but they were already gone by the time we got there. He didn’t understand so he wasn’t too upset except that we had to sit at a light for a very long time. When we left he said he wanted to go bowling. We got halfway there and he started yelling that he wanted to go home. He then kept saying it. He is working through emotions and cried several times. By the time we got home, I wanted to melt into the floor. It breaks my heart how hard it can all be on him. And my thoughts just wilt away at my emotions and how to handle something. I want him to be able to try new things but I also don’t want to push too hard so we never get to do anything. When we got home it took him a few minutes to calm down, asking for church tomorrow numerous times as soon as we walked in the door. I fixed him a snack and then he came to me. He reached up to give me a hug, walked away, saying, “bowling”. I said we could go and he said, “church tomorrow bowling on Monday let's go Monday”. My heart filled with gladness. I don’t know that we’ll go on Monday but I’ll sure try to take him. He put together the whole thought and did it with his connection to emotions. I needed a hug, he gave me a hug, and I’m sure he needed the hug. The rest of the afternoon was spent pretty much with him connected to my hip but I was fine with that. I think we both needed it. He didn’t fall asleep quickly but he fell asleep in my arms and for that I was thankful. My heart wants to give him the world but I know the world can be so overwhelming for both of us sometimes. Never give up. Tomorrow will be a brand new day full of possibilities. Smiles to all and donut daze!
All the days are blending together. Owen handled today mostly ok, kinda good, with a side of ready to make sure his routine was going to be back in order soon, and I promised him it would be. I tried to keep him busy but I think he kept me busy instead. He said, “grandma,” I think approximately fifteen billion times today. I tried to explain to him that he doesn’t have to say it every second but that only caused him to then say his teacher’s name instead. We did get to practice a lot of our animal sounds and many of them pretty much sounded the same to me after being up since three in the morning when Owen was quite happy to be telling me exactly what a gorilla does and does not sound like. “Hear it noise gorilla no gorilla sounds like this” and he proceeded to make the gorilla noise and laugh hysterically. I told him that it was nighttime and he had to go back to sleep. It was amazing how wonderful the “blue bed” became. He was ready to take his tablet and go back to the blue bed. I gave in after a while. The only thing it really wasn’t where he ended up. He watched TV loudly and he came to tell me about it numerous times. He then told me he was going to the “blue bed” with his “blue tablet” but again he kept running back to me to tell me animal noises. He ate like he is growing again and even ate a lot of ham which he is generally not a big fan of. He came to me later in the day squealing and I knew something was up. He handed me his glasses, telling me to “fixth it”. He has been taking them off more. Generally, he will raise them up when he is looking at his tablet. I think he mostly needs them for far away so I think he understands this but he is playing with them more because of it and when he handed them to me the side was bent even further than it was already so it was flapping now. I was able to push it in a little but I didn’t want to break them completely. I asked him if he wanted to keep them off since they were broken and he said, “no leave on”. I explained to him that he was going to have to be careful with them otherwise they would completely break and he wouldn’t get to wear them until they ordered a new pair. He seemed like he did better with them after that. He’s growing. I called his eye doctor and luckily they were still under warranty so they were going to order a new frame and be able to put his lenses in them. The day closed quickly with him tired from being up so early but even though he was asleep I kept checking on him because I do believe he was trying to translate all his animal noises into Russian, Arabic, and kangaroo, which is now his new go-to language that I try to explain to him is animal, not a language but this too shall be interesting to see what words he can make into kangaroo. I always wonder if he truly understands languages are not all-encompassing. Hey, if you’re happy and you know it speak kangaroo. And with that, I hear him talking about something but I think he is still sleeping. Happiness is hearing him laugh with great gusto. Find what makes your heart happy and the rest will follow. Smiles to all and donut daze!
The weight on the world sits heavy as we wait for the world to start turning again. My heart aches for the stress everyone is under. Every single time the phone rings I think it is the call I got today. Owen once again was possibly exposed to covid. I had to go get him from school. He doesn’t understand. If I can see the bright side, at least it was Thursday and he’s used to me picking him up for therapy instead of riding the bus home. But then that bright spot makes me cry a little more because he couldn’t go to therapy. Sure it’s only this week but it’s routine and routine means that hours later he was still asking why he didn’t go to therapy today. And then for hours he was talking about going to school tomorrow. He’s ready for his Friday routine. I told him why he didn’t go to therapy and why he will have to be with me tomorrow but how can any of it possibly make sense to him when nothing about it makes sense to me. I’m thankful there are no signs that he has it so I try to be positive and move forward. Easier said than done when I know so many families are hurting and he is going to wake up tomorrow wanting to ride the bus and go to school. I have to remind myself this is one moment in time. We had a good evening though. He was very calm and wanting to sit with me. We had a little bathroom setback but I just have to put that out of my mind. He let me sing with him and he wanted me to help him with his animal noises. He fell asleep quickly and I watched him sleeping for a few minutes. I always pray the same thing, peace for my baby. I hope tonight is the night he sleeps all the way through the night in his “blue bed” and I hope he’s not upset that he doesn’t get to go to school tomorrow. His laughter, his smile, his request for milk in Arabic are all joys that fill my heart. We are not alone in this journey even though sometimes the path feels lonely. Today is the first day of the rest of your life. Never give up on the hope for tomorrow. Smiles to all and donut daze!
Those behaviors started again. The repetitive behaviors for both of us. As soon as Owen got home from school he started asking about his teacher and I started answering. Some days I don’t know how to stop the train. He slept better than most nights and still was yawning when he woke but the instructions started immediately. “Sit”, he said before we even got out of bed. I told him that if he wanted to go to school I couldn’t sit. He immediately said, “school” and was running to the bathroom. Hooray for that. I’m thankful school is a priority for him. It also leads to his repetitive and obsessive behaviors. When he first got home from school he was very clingy. He wanted to sit on my lap, gave me numerous hugs, and wanted me to play his game with him. This lasted for an hour or so and was not part of the norm for him. After a while, he moved on and was upset about the game he was playing. His foot was slamming the floor and then he was jumping up and down. The whole floor shakes now since he is growing. I told him he needed to put his tablet down if he was going to get so upset about the game. He ran off. A few minutes later the same thing happened. I have always tried to work with him on calming techniques. When he was very young I would hold him when he was having a meltdown and tell him to concentrate on my voice. I would rapid-fire questions at him that I knew he couldn’t answer but I needed his mind to be distracted. Then I would sing a song I made up. He knows it and he knows to sings it when he is struggling. “It’s a rolie polie rolie polie and I’m bigger than this”, he sang out, with his foot still stomping. I said, “good job now breathe”. He calmed down and we moved forward. The night felt long. I think our table is finally completely broken from him pushing on it. He cried out a lot about the internet being too slow and wanting to go to school. Instant, we want instant and that means now for anything we want now. When it was bedtime he became giddy and had a whole attitude change. Bath time was a great time of laughter for both of us. As soon as he got out of the tub I had his towel ready to wrap around him but instead, he went under the towel to gave me a big wet hug and laughed again. I put the towel around him and he quickly hung it up and ran out of the room yelling, “Alexa gorilla in Arabic”. He stood by Alexa asking for everything he could think of while I stood there saying come get dressed for bed. He laughed and he finally came running back to me. He got in bed and spelled and yelled himself to sleep. He must have spelled twenty words getting about half right and falling asleep in my arms yelling for school. I hold onto his laughter. Today is one moment in time. Follow your heart. Smiles to all and donut daze!
Owen came to my room not much after midnight. He said something about not going to be in the blue bed and asleep he went. What this means to me is not much sleep. His new old thing is to put his head in my back. I’ve never quite understood it but I’m thinking it’s sensory input for him. The other thing that I thought he moved on from was being able to pull the tiniest of my hairs at the nape of my neck. I do not understand how he can do this when he is completely sleeping. We woke several times throughout the night but there was a reoccurring theme of him not wanting to sleep in the blue bed. He woke again before five and told me that he was going to the blue bed with his tablet. At this point, I was like dude we are sleeping. We laid there for a couple more minutes but then he played the old “need to go potty” routine and off he ran. For needing to go potty he sure made a lot of detours. The “sit” trend continues. He asks continuously for his teacher and wanting to go to the bus but he wants me to sit with him while he is running around or playing on his tablet. It isn’t necessarily that he wants control over me as it is over controlling the whole situation. He wants to know what his routine is constantly. It was raining this morning so I had him put on his jacket and I wore a sweater. This did not go over well with Owen at all. As soon as he saw me put it on he starting talking about it being a sweatshirt. It wasn’t even close to the look of a sweatshirt except maybe because it was grey. The longer I wore it the more he started to scream. I finally took it off and he was calmer. I was hoping this year the seasons changing wouldn’t be as hard on him, especially the winter clothes. Oh, how I wish it wasn’t hard on him. When we got to the bus stop he was happy as a lark. He immediately wanted to ask Siri about animal sounds and everything he could think of in Arabic. It seems to continue to be the go-to language of choice. Off he went to school making gorilla noises. When he came home he immediately wanted me to change. He needed to know we were going to stay home for the rest of the night. As the night wore on he became calmer. I told him “I love you”. He came and hugged me, saying, “I love you”. There is nothing better. Find your joy, share your smile, and know that you matter. Smiles to all and donut daze!
I'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart.