Some days my heart soars with gladness, other days I’m a pile of jelly on the floor, trying to figure out exactly how to pick myself up off the ground. I never have enough time to sit, even though that’s what I mostly do. When I’m sitting, I’m still active; mostly my brain spinning in a million directions, all wondering how to help my baby. It’s like you can’t focus on anything, because you are focusing on everything. The time changed this weekend. No matter how you look at it, for us it is hard. The concept of time isn’t something Owen understands to begin with, and then add in the change it gets even more difficult. Bedtime is different, our morning routine is different. And it’s only an hour. I had to wake him up this morning to go to school. He immediately pulled the covers back over him. I totally understood, I had done the same thing. The last week has felt rough for us. He’s growing, learning what his body is capable of doing, and finding new ways to express himself, but with that they are not all great choices. He knows how to make himself gag, and then throw up. How do you stop a sensory child from doing this. He finds great humor, and enjoyment in the mess of what he has created with his body. I have to take him immediately from the mess, or he will play in it; all I can think is I’m thankful he has moved passed the fecal smearing. The doctors, and therapists tell you to get ahead of the behaviors, stop them before they happen, but which behavior do I get ahead of first. My heart cries out for my child. Once I have him cleaned up, and ready for his next learning experience, I try to explain to him why he shouldn’t do something. And along comes the words that make everything alright, “I wuv ewe wanna hug”. All I can do is push forward, grow, and tell him I love him, too. I never imagined how emotional, and hard this could be; the easiest part of this journey is the love I have for my son. Owen has taught me more about myself, and the world than I can even explain. For the love of Owen I push myself to be a better me. Life can be messy, but together we can make a difference. Find your strength, and make today matter. Smiles to all and donut daze!
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Owen stood at the end of the couch, with his tablet on the arm. I was on the other couch, sitting, reading. At the top of his lungs, and for more seconds than I can count, he starts yelling “stop”. And he didn’t stop until he ran out of air. My house sits maybe fifteen feet, or so from my neighbors. All my neighbors know my son has autism, and they all know he screams. One day my neighbor said, I’m sorry y’all had such a rough night. I remember that night, he screamed at the top of his lungs off, and on for two hours. Two hours. There was nothing I could do to calm him, stop him, or distract him. And what kept me up, I’m sure kept the whole neighborhood up. Voices carry, especially in the middle of the quiet, night air. This is where I think of my fellow families that live in apartment complexes, or other type homes. Knowledge is the first step to love, compassion, and understanding. My emotions run high some days thinking about everything. Owen doesn’t always understand the meaning of words, like most kids, but he can’t process why he shouldn’t say certain words that he may learn, or even in certain situations. He plays a game that one of characters sets booby traps, and he has to solve problems to get out of them. Well, his new thing is to say “booby steps” as he is walking on, or off, the bus. He has a whole song, and delayed dance on each one of the steps as he says it. Sometimes throwing himself down on the steps, thinking this is the greatest thing ever. Me, well, in the grand scheme of life, you gotta laugh. His smile, that gets me through the booby traps of life. I look at life differently now, trying to focus more on the positive side. Everybody’s got something, and together we can work together to change the world. Smiles to all and donut daze!
Owen didn’t sleep all night in his bed, but he did go right back to sleep in my bed, and slept well after six. I got more sleep last night than I have in awhile. I got up, and Owen said, “blanket”. He wanted me to cover him up, but he had it all the way on him. I told him he could lay there, mommy was going to the bathroom. I didn’t turn any of the lights on. He started yelling, “Owen Owen Owen”. He doesn’t really have a connection to his name, that it belongs to him. He can spell it, and write it, but when I say, “Owen what’s your name”, he still doesn’t always answer Owen. There are many words he doesn’t use in the context he means. He was given a new beanbag crash pad, which he loves. He was snuggling down in it, wrapping in it as best he could, and I asked him if he liked it. He said, “nope”. I told him that he does like it, because he sits, and plays on it a lot, so he should say “yes”. He immediately said, “ma’am”. He’s full of energy, mischief, and an underlying defiance, sprinkled with cuteness, accompanied by his trademark smile, that lets him think he is going to get away with everything today. He’s very interactive with me, wanting lots of hugs, input, and joint compressions. I will hold him, tickling him, and say “I’m going to tickle you mister”. He was across the room, ran to me, jumping in my lap, took my hands, that were holding my tablet, and said, “I’m gonna tickle you mister”, and started laughing before I even tickled him. He wanted “piggy market”, which means rub his feet. The spark in his eyes is my soul therapy. Some days he’s very withdrawn, and he can’t process what he need to say, or what I’m saying, and then there are days, like today, that for everything I say he has a response, or his mischievous grin that tells me he meant to do that. As he recites the words he knows to his beloved Disney commercials, I’m thankful for the sparkle in his eyes. Reach for hope, even when you feel your heart breaking. Hope is there. Tomorrow is a brand new day. Smiles to all and donut daze!
Thankful, okay, so beyond thankful, Owen slept all night, in his bed. He woke, ran to my bed, proceeded to jump right on my belly, as he was getting in the bed, and when I made a slight groaning noise, he said, “are you cranky”. My first thought was I love these morning conversations. I told him no, asking him if he was. He didn’t answer, but went on to tell me he wanted his milk. Milk truly means his tablet; milk, however is his go to choice to say, so I’ll get out of bed. Today was another snow day for us. His school was first on a two hour delay at first, but then they cancelled it; right after I told him that he was going to school. I told him he was going to see his grandma, so he was happy with that. Days that aren’t routine throw us off; even if he is happy with what is happening it can still set forth a change for the rest of our day. As we were driving this morning, he started talking to me about the stoplights. I try to tell him exactly what will happen as we are going along. As we were approaching the stoplights, he said, “stop at the wed wight”, he went on, “gween wight means go stop at the red wight” and then he screamed, as we had stopped for the red light. I want him to understand the process of the lights, so it doesn’t cause him as much anxiety. Driving with Owen can be very emotional for me, the screaming alone can put me on edge, but I try to find ways to comfort, and distract him, as we drive along. I listen to his speech, trying to determine how to help him process sounds. He still has a hard time with certain letters, especially when they are at the beginning, or the end of words. Every day we grow, we learn, and we do this as a team. His smile is my inspiration. Take the gift of today, and find what inspires you. Smiles to all and donut daze!
I often hold both sides of the conversations for Owen, and me. Even when he was a baby I would talk a lot to him. But I never imagined the emotions I would experience having a nonverbal child. I remember when Owen was in daycare, every day I would get a call to come get him, or they would explain to me when I got there to pick him up, that he wasn’t interacting the way he should, or the other kids did something to him because he wouldn’t share; my child wasn’t even two, does any child at two know how to share, I always thought. I didn’t understand what was going on, or why this was happening, but I felt very alone. He wasn’t meeting milestones, he wasn’t talking. I think this is when I starting having our full conversations. I remember one day, as we were heading home, I asked him if he had a good day. I would always fill in the next words “yes mommy”, or “it was fine”, before I could even finish, he yelled, “yes”. Little did I know how precious that word was. It was so random, he never really babbled, and he didn’t say words, but yet he yelled “yes”. Last night, as I was taking him to his church program, he started getting upset about the lights; he doesn’t like sitting through them. I started talking to him about being patient, and how we work through this. I always tell him to count to ten, and then if he is still upset I have him name five of something. We went through his colors, and then I asked him to name five animals. He yelled, “zebra zebra zebra zebra zebra”. It was almost in the exact spot that he yelled “yes” so many years ago. He’s come so far, and every day he’s growing. This is the child they told me probably wouldn’t talk, this is the child that talks. He has taught me to never give up, and look for the hope in every situation. This morning walking to the bus stop, he said, “I wuv ewe”, as he walked backwards, turning himself into me. Find hope, live for the glory, and love the most. Smiles to all and donut daze!
Owen got into bed with me at some point. We both fell back asleep pretty quickly. I woke before him, the outside world waking me this time, and I got up. I turned on the light, made some hot tea, and as I was sitting down I heard his screams. This seems to happen more, and more. He can’t process that I have turned on the lights without him, or maybe it’s too bright, I’m really not sure, but he runs through the house, yelling “turn de light onT”; flipping the switches on, and off, as he goes. He said, “momma get me cracker momma get ewe some”. I got his milk, and cereal, putting it on his table. He intertwined his dialog with mine, saying both parts of the conversation. You never realize what words you say over, and over again, until your child repeats back to you what you say. Early on I tried to use the same phrases, and expressions with him, hoping that he would associate it with the item, or activity we needed to do. Years later, years, he says the things that I said to him as a baby, and then toddler. The amount of knowledge he has stored, waiting for the day he could use it astonishes me. The more he finds his voice the more those phrases come out. But there are days like today, I have to sit back, and drink my hot tea, so I don’t get too emotional; days like today that he forgets his words. As we were sitting at the bus stop, in the car again, he kept saying “de fish is comin de fish will be here real soon”. At first I thought he was talking about going to see the fish, but then I realized he meant the bus. I didn’t try to correct him, but I did use the word. I said, you are right the bus will be here real soon. After that he exchanged the two words with each other. Maybe it was the moment, or how he wasn’t processing it, but it’s always hard when I know he can say those words. One day at a time. This doesn’t happen as often as it used to, but it’s still the reminder of yesterday year. My baby has come so far, and today as the bus was coming, he looked at me, and he smiled his big toothy grin. The little things, that’s what matters. Find victories in your moments of challenges. Remember every step forward is still a step. Smiles to all and donut daze!
We stood by the door, getting ready to leave for Owen’s school bus, when he took my hand, moving it into the “I love you” sign. He moved my fingers back, and forth, wanting me to repeat it over, and over, until he moved to the other hand. We had to go, but I could have stood there for a lifetime. These are the moments that I long for; but there was more to come. We got to the car, it was too cold to stand at the bus stop, and as I was strapping him in, he kept saying “I wuv ewe”. He repeated it several times, trying to move his fingers to the sign. He made a kissy noise, and leaned his head forward for me to kiss. I stood there in the cold, but I didn’t care; my soul was happy. When your child is nonverbal these moments are the ones that keep you going. He’s learning to talk, uses words more, and more every day, but he still doesn’t know how to respond to questions, or carry on a conversation. He’s getting it, oh how he is definitely getting it, but still these are the moments I know how much he has grown to put it all together. As we drove to the bus stop, not even a block a way, I could hear his excitement, through the babble I couldn’t understand, but recognized his tone as an advertisement for a Disney Junior show. As we sat at the bus stop, I could see Owen moving his hands back, and forth, trying to wave, and sign “I love you”. That’s what I do, as he is getting buckled into his seat on the bus, I stand on the sidewalk showing him the “I love you” sign, moving two of my fingers up, and down, as a wave. When he saw the bus turn the corner, from many blocks away, he said, “is he here yet”, as the smile washed across his face. I was trying to wait until the last possible moment to get him out of the car, and he said, “open open open de door”. My sweet baby O was ready to go. Today, when the aide was buckling him in, I could see his full attention looking out the window at me. As the bus drove away, I was thankful for our morning. Thankful that his voice was strong, and full today. Celebrate the little things in life. Every step forward is worth celebrating. Take a moment, reflecting on the positive side of life. Smiles to all and donut daze!
I started the bedtime process a little later than usual last night. Not really by that much time, only about fifteen minutes, but it was enough to throw the whole schedule off. I was hoping to adjust his time, thinking he might sleep better through the night, if he went to bed later. Instead what it did was to cause his behaviors to be multiplied. I took his tablet away earlier for behaviors, so that didn’t help the routine either. He always gets the five minute countdown for his tablet, and it was gone. He ran around the house screaming, trying to knock things off the wall, laughing, and anything he could to avoid going to sleep. The good news he slept all night, after the hours it took him to go to bed. Me, I woke up multiple times, feeling the space next to me, seeing if he got into bed with me. I woke up before my human alarm went off, or my clock. I had the kitchen light on, had been up for about thirty minutes, trying to make as little noise as possible; and then Owen woke, came to the kitchen, turned off the light, and said, “it’s time to go to sweep”. He ran to my bed, and since I didn’t follow, he yelled for me to come, “hey Owen hey Owen hey Owen get down hey Owen come here Owen”. He’s like a tiny ventriloquist, trying to mimic the tones, and voice of the person he learns the phrases from. He doesn’t understand to yell for me, even though he knows I’m mommy. I came to my room, tucking him in the covers. He repeated, “it’s time to go to sweep”. I walked back to the living room, and he stayed in the bedroom for about five minutes. And then he came running out, asking about school, and his teacher. I told him he would go soon; his school is on a two hour delay for snow. He ran back to my bed, but this time I had to lay down with him. Him wanting to stay in bed is a rarity. Him wanting to go back to bed, multiple times is unheard of; his tablet usually calls his name. I laid there with him for awhile, he never fell back asleep. He got up, asked for school again, and wanted his breakfast. So the day begins. These are the “Lord give me strength” moments. The correcting of behaviors are not a quick timeout, and he stops kinda thing; it takes time, and patience to overcome them. Today, I telling myself the same things I tell him; patience and count to ten. Life is not always a cookie cutter option. Embrace who you are; be bold, be beautiful be you. Smiles to all and donut daze!
Owen woke screaming. He ran to the living room, upset about the light. I had been up since five, with the one, two punch from a sleeping Owen. It was a little after six, and he wasn’t quite ready for the world. He quickly recovered, and has had a great morning of words, and interactions. The last few days he has been paying more attention to how his body reacts to movement. He was singing She’ll Be Coming Around The Mountain, moving his feet, dancing in place, and bending over to see what his feet where doing. For a long time he had no connection to what his hands, or feet would do. He often took my hand to do an action he couldn’t process, and watched how my hand would perform the task. When we go bowling he is starting to carry his ball to the ramp, to push it down the lane. I’m thankful for these moments; I see growth in what he is doing. He looked over at me, and said, “I wuv ewe”. The emotions are overwhelming some days with sadness, but it’s the moments like this that wash everything away. He’s wanted lots of input, running to me to get tickle, and playing “dis little piggy went to market”. That is how he tells me he wants me to rub his feet; putting pressure on the bottom of his feet, but also going through the motions of the story with his toes. He’s sat next to me more than usual. “Give me ahh hug”, he says, leaning his forehead in for a kiss. I made an exaggerated kissing sound to his forehead, and he tried to make the sound, putting his fingers to lips to feel what was happening. Exploration of his world is in full bloom today. He’s ready for his day, and so am I. Explore your world, be thankful for the little things, and find your happiness. Smiles to all and donut daze!
I started a pile of clothes that were too small for Owen; albeit only one pair of pants, I knew it was the pile to give away. Owen saw it sitting there, he grabbed it, took it to the laundry pile, and said, “good job you do great work now you can play teach time or reading eggs”. He ran to me, and then said, “yay we did it”, leaning his forehead towards me for me to kiss him. So much goodness in those thirty seconds I want to shout it from the rooftops. I often reflect on where we’ve come from, maybe too much, but it helps me to see the huge progress, even on those days that feel extremely hard. I try to give Owen tasks that he had to do every day. When he takes off his shoes, and socks he has to put them up, same with his clothes; so the pants sitting there needed to go with the dirty clothes. At school, when he finishes he work, he then gets to choose an activity. His teacher has told me that he will choose more schoolwork over some of the other activities. Reading Eggs, and TeachTown that he calls teach time, are two of the ones he goes to most. I have loaded the apps on his tablet for him, and many times throughout the day when he is home he will go to those apps. I talk to Owen about his behavior, and emphasize the good points, but I make sure he understands that poking mommy in the face every few minutes at four in the morning is not exactly nice behavior. I want him to know we are a team, and together we will get through this thing called life. It can be daunting, overwhelming, and downright sad some days, but the joys, that’s were my inspiration, and motivation come from. Today’s bowling day. He’s ready, and I can’t wait to see how today goes. Any day can be ordinary, but if you add a little extra to it the day will be extraordinary. Make today matter. 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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