Sweet Baby O - Our Autism Journey
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Moving Obstacles

4/26/2015

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I can tell Owen is trying to find peace in his body and that moment has yet to come. The movements are like an uncoordinated ballet mixed with a martial arts performance of epic proportions. His strength surprises me but yet I don't know why because I know where he gets his strength from. He can't stand still or sit down for long without the fidgeting motions. He jumps all the time and he does lots of little push-up type movements on the ground so of course he is beyond strong. 
I keep thinking that one day I will be able to get the right combination of exercises or compressions or activities in just the right order to help him calm down. This coming week we go for an mri and an eeg to see if they can give me more explanation about the seizures he had or even more information about the autism. I asked several of the doctors he just recently saw if they they thought my hemihypertrophy had anything to do with it, so far they don't think it does. That's a relief. I wouldn't want him to have this on top of everything else. I knew it wasn't the body part because I can tell he is the same on both sides I just was hoping it wouldn't be anything internal. 
Maybe as he gets older he will be able to settle himself or tell me what feels better to him. I just know that I will keep trying things till I get this right. The hardest part of this journey is never knowing what Owen really needs. I am hopeful every day that he finds his voice so I can learn more about my son. 
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Sleep Is A Four Letter Word

4/23/2015

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I sit here holding my baby, dreaming of a moment when it won't be such a struggle for him to fall asleep. I think back when he was such a good sleeper and wonder why he has such a hard time going to sleep now. Does autism change the brain that much? Could it be something else or maybe I just haven't found the right rocking, butt taping and pacing combination. 
I think about all the little movements he goes through every night, the struggles, the cries, the rolling, the emotions. I stew about it all. I ponder, I wonder and sometimes even think real hard, yet nothing changes the fact that my baby doesn't sleep. The nights that I wake up and he hasn't come running to me in the middle of the night I wonder what's wrong, I still go check on him to make sure everything is okay. 
Sometimes I put him in my bed to start off with hoping this will help him fall asleep easier or stay asleep, that isn't the case though, sleep doesn't always happen. There are nights when sleeping is over at 2 am. He is just wide and so isn't mommy. I just want a little more sleep, just a little. If we could even get on the same sleep schedule that would be great or at least close to it. 
Owen goes next week for more testing, an eeg and an mri. One he has to be sleep deprived and the other sedated. I wonder if sedation will be necessary after he is sleep deprived. I hope they find nothing but his cute little brain in there. I often wonder, even though the doctors don't think so, if my hemihypertrophy has anything to do with his brain stuff. Maybe he has two things, autism and other brain things. We will soon find out. 
As I watch him tonight I hear his soft noises of rest, the peace that he has been looking for to turn his brain off even if it is just for a little while. I sit and pray that he grows out of these pains or these moments where he can't rest. I just want him to be able to sleep peacefully. 
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Differently Normal

4/20/2015

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It's okay to cry. Today I mostly just sat and watched my little boy. Just watched him do everything. A little laughing, a little crying, a little struggling, a little learning, a not so little meltdown and a lot of love. I wonder so much sometimes I feel broken from wonder. 
He captures my heart every time he turns that grin towards me. I think about his sweet little voice that comes out when he tries to ask me for mulk. When I hear the word mulk it quickly makes me think of how far he has come since taking him off dairy and substituting it with almond milk. I wonder where he would be if I hadn't taken him off dairy. I wonder if taking him off gluten is making any changes in his system. They say it takes longer to notice changes with the removal of gluten. When will I know? How does the magic appear?
This past week was a big week. We had three doctor visits. I found out a lot yet still know nothing new. Two of the three appointments led to more doctor appointments. I wonder how many more appointments it will take to know more about my baby's condition. One of the doctors said that they were looking for what was causing the symptoms of autism. In some ways I liked the sound of that. A symptom sounds easy to find a solution for rather than a disease. 
Listening to my baby laugh at a person speaking French made me wonder is it the fact that they were speaking French and maybe he understood it or was it the visual from the nursery rhyme that was making him laugh. Sometimes I wonder if I should try talking to him in a foreign language, maybe that would be easier for him to understand.
Today, I wonder if he understands how much I want to help him. I wonder if he even knows that we are different. I know that different doesn't matter because I was born with hemihypertrophy and not many people know what that is or even know I have it but I'm still different. Life is to short to worry about being different but yet now that it is for my own son I would love to hear the word normal come out of a doctor's mouth. 
So it is okay to cry, it is okay to rejoice and it is okay to hate autism. Emotions are real and they are raw. As I look down at Owen sleeping in my arms I don't think about the fact that we are different, I think about the fact thattoday he asked me for mulk four times and signed "more" when he was eating his snack and wanted more. Today, I would say we accomplished great things and normal isn't all its cracked up to be. 
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The Art Of Repeat

4/18/2015

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I wonder what makes us like something. I wonder what makes us want to do things.  I wonder this because I sat and watched Owen look at the same portion of a video more than 40 times, with the same actions and then the same reactions. 
He knows how to do so many things on his tablet. I was amazed though at the consistency of how he went through this video. I know my baby likes to repeat things but this was so interesting to watch him because he had to go through so many steps to make the video start and stop and then repeat it in exactly the same way. 
I wonder what it is like for him to see it over and over again. I wonder how this brings him such joy. I suppose it is like when I get my favorite piece of chocolate or get to listen to my favorite song over and over again. I just wonder how it makes him feel. 
I know that repeating things and routine help Owen so much. I keep trying to figure out ways to get this translated into words for him. I have been exploring different apps that are picture related. We tried this with his speech teacher early on but he didn't really take to it. I think now that he is a little older maybe he will like them again, sure worth a try. 
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Owen's Journey

4/14/2015

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I write this as encouragement to others because Owen’s journey has been different than most but yet similar to others. I share this now as hope for parents and just to say never give up in life. Owen was born in a normal way on just a normal day to maybe not so normal circumstances but yet I couldn’t wait for that magical day. Owen started growing just as any typical baby but as time went on I started noticing things that may not have been normal. He really didn’t do some of the normal things that a nine month old baby would do or then a twelve month old baby but yet he did so many normal things. As time went on I began to notice that he wasn’t really talking and was kind of withdrawn but I always said he is Owen he will get there when he is supposed to. As his two year birthday approached he still wasn’t talking. Through many doctor appointments and many specialist appointments I sat through them just wondering what was going on with my baby. And yet no answers came. So I checked into Birth to Three for Owen. The appointments came and went. Some days I was encouraged and some days I just wondered how I could help my baby. More doctors appointments and more specialists followed and yet still no answers. I would look at the internet and type in questions only to be confused by the answers. Finally I was encouraged by a friend to take Owen off of milk, the one thing that I could get Owen to drink. My baby never liked juices, not really even water and only ate very few foods yet here I was faced with the decision to take him off milk. It really wasn’t a hard decision after all. Just do it. I had just bought three gallons of milk that night when the suggestion was made but what is the price of milk compared to trying something to help Owen, so I said no more milk! The next morning Owen had his last cup of milk and we started this incredible journey. The first few days were a little bit of a transition. It was hard on Owen going from whole milk to almond milk but after the first few days it was just like milk to him. The first couple weeks I really didn’t notice much of a change in Owen and then all of a sudden it was like the fog lifted and I started to see this sparkle in Owen’s eyes. My little amazing guy is starting to talk, he is starting to want food. He actually asked for food. We were sitting in his speech class on January 14, 2015 and I had nuts that I was feeding him. He said “nuts” and then he signed “more” and said “nuts”. Then he said “more nuts”. This momma cried and smiled and just thanked God for this little word. My son asked me for food. I have seen so many changes already in him just in the three weeks he has been off milk. He is trying to say his alphabet and so many other words. He is eating better and trying new things. The sparkle in his eye and the smile on his face gives me such joy and encouragement. Owen has always been a happy baby but now I see this little light in him that just wants to grow. The journey is far from over as I try to eliminate other things out of his diet such as gluten and sugar. I’m not sure if these will have as great of an effect as the milk but I am encouraged to try. Today is a brand new day and I am celebrating Owen and his accomplishments.

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Emotions

4/12/2015

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How come Owen responds to "do you want a bite" but not to "Owen"?!?! What's making him not understand his name?!?! Or he does understand his name, just food is more important. 
Every time I say Owen I think this is the time he is going to look at me and respond. I think this is going to be the time he looks at me with those beautiful blue eyes and he says yes momma. I think today is the day. I think, oh please let today be the day. 
I often wonder why his name isn't  clicking with him. Occasionally, I call him buddy but he doesn't respond to that either. I wonder what's in a name. He really doesn't respond to many things. I will say you want a bite and he will turn his head. I wonder if I catch him at the right time so he responds. I wonder if that is the time I would have gotten a response to Owen. 
I was so excited one day when I said to Owen "come here" and he turned and he came to me. I thought we are on to something. I keep waiting for a repeat of that day. I keep waiting for my son to walk over and say yes momma. I keep waiting... 
Don't get me wrong I accept every little thing Owen does as a huge milestone but there are some days I just wish he would understand that come here means come here. I think as he gets older those words will keep him safe and let me hold him tight and help him in so many ways. They are just words but yet I feel like they would be words he needs to know. 
The words that mean the most and I say to him constantly are I love you. I think even if he never understands another word I hope he understands what "I love you" means and that he is my world. I love you Owen Emerson, I love you!
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Mission: Asleep

4/8/2015

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Sometimes I feel like I should write the words "Dear Diary," when I start writing about our day. I remember so many of my early childhood moments and that was one, writing in my diary. I often wonder what Owen's memories will be like. Will he remember tonight as I sat here holding him and him trying to pry my mouth open so he could see my "teef"th.  
What is it like to be trapped in your body and not be able to say what you want? How does it feel to not speak the words you want to speak? When does speech catch up to his knowledge? When does his knowledge catch up to the movements he makes? When does his brain get a break? More questions than answers.
I sit and wonder so much about my son. Some nights I just have to sit and hold him for an hour to make sure he is completely asleep before I lay him down in bed. He struggles with nighttime so much. It is like something goes off in his body to actually turn his body on. His body becomes this whirlwind all in itself. He can't seem to calm down his limbs or rest his brain. Like he saved up all day just to have this energy burst for bed. 
The doctor said try melatonin. I did and I don't think it was what Owen needed. It seems like he was having more outbursts with it. He would scream for 20 or thirty minutes straight when he would wake up in the middle of the night. Since I stopped giving him the melatonin he doesn't go to sleep as quickly and still wakes up a lot at night but it seems like the night terrors or screams are gone. 
I just can't help but wonder, as I sit and watch my baby finally find some rest for the night, what is it that makes him fight sleep so much. Maybe it truly isn't fighting sleep so much as it is something that kicks in and won't allow him to sleep. Oh how I wish I knew. This momma will sit and hold her baby as long as it takes. 
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Preschool, 0h My

4/6/2015

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Picture
Today was a big day for Owen and I. He started preschool and I started crying. Okay so crying has always been something I do but today I cried about preschool. 
I don't think there is an emotion I didn't cover today. At one point I was mad. I really can't figure that one out. Why mad!?!? I wasn't mad about the school or the people or even the circumstances just mad. Maybe it was just one more feeling that had to come out. Maybe I was mad because that is what was left to feel at that point. I'm learning that any emotion is okay and I'm gonna have lots of them. 
Today was a good day and a sad day and a happy day. I try to judge Owen's emotions and how he is feeling based on his eye contact, his need to be near me, and his want for his usual things. I wonder if I get it right some days. Today after I picked him up I got a big hug and the sweet little voice saying momma, momma. That is exactly what I needed.
The hardest part of this is not being able to really communicate with my son. I think he understands lots of things. I think he is very smart but when it comes to telling me things he can't yet put those stories into words. I got so excited today when we got home, I let him walk up to the house and he leaned down to pick up a leaf. He said eaf, eaf, momma as he held the leaf up for me to see. I was so excited for this little communication. I cherish these moments with him when he is fully engaged in his surroundings and he can express what he wants to tell me. I hope they get easier and easier for him to make these connections. 
Owen likes to gather toys together and hold as many things as he can in his arms. Maybe this is a comfort thing for him. When he got into the classroom he started gathering things and was carrying them around. A few of the other little kids approached Owen and when he would drop something they picked it up and handed them back to him. I thought thank goodness because this helped Owen to not have a meltdown. I told one little boy thank you for helping Owen picked up the toys and he looked right at me and said "ah, it'll be alright." I looked at this little boy and thought yup it has to be alright.  
I haven't yet made up my mind if preschool is right for Owen but it is for our right now. Every day I see these changes in Owen and look for the spark in his eye. He said "home" today, a word that he hadn't said in months. Just knowing he has that word somewhere in his memory made me so excited. Home is this comfy little word of love to me and to hear him say it just brought tears to my eyes. Tomorrow will be a brand new day with new adventures of preschool. I think today was a good day for him at school, I hope. We will see where it leads and hopefully we both won't cry tomorrow... Crying is okay though, right?!?!
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Round Stuff

4/4/2015

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Round stuff! We like to eat round stuff. I have come to the conclusion if it is round we like it. If isn't round we might like it if it was round. So in all fairness there  are other foods Owen likes to eat and they don't have to be round but round food wins out most of the time. 
Today, I made Owen fries and they happened to be the long crinkle cut fries, not the round tater tot type fries that he really likes so they are still sitting there. They caused a little meltdown to happen but I think he already was in meltdown mode. I wonder if I had made the round ones if a meltdown would still have happened. 
Shapes and textures play a big role in our everyday life. I'm still learning what all of this means. I know he finds comfort in certain textures and I know that he is drawn to shapes like the circle. I often think how are they all connected. It is kinda funny to me I always called him my little orange and he loves round things and orange is one of the colors he is drawn to. 
Okay so scratch all this my boy is eating the rectangle fries. Hahaha. I guess meltdown mode is over and hunger is winning over. There is one way I have always described Owen, he is consistently inconsistent. We all have a right to change our minds and I'm all for letting Owen find what makes him happy... With a lot of encouragement from me. 
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Food Expressions

4/3/2015

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I was brushing my hair earlier and realized I had a piece of corn in my hair. Nope, I didn't have corn for dinner but Owen did. I think that half the fun of dinner is the wearability, right?!?! It always seems like I wear a little of his dinner and he wears a lot. 
I always thought kids were messy when they ate but Owen has an almost artful way of eating. There is something about sensory babies and their need to spread food all over their face that is very interesting to say the least. And when I say face I mean everywhere and my face too. I think he wears more than he eats some days. 
Owen has to almost be one with his food. Early on he used a fork and a spoon and then that just disappeared. I give him utensils and he wants nothing to do with them. He actually prefers to feed himself but I try to feed him sometimes so he understands he is suppose to eat with a fork and spoon. 
I wonder what makes Owen think he has to take his food out of his mouth and feel it after he has put it in his mouth and chewed it for a few seconds. Then my next thought is why does it need to be spread across his face and into his hairline, across his eyebrows and smeared across his cheeks. I wonder why he has the need to take a bite and then put part of it in his ears, nose and even near his eyes. 
The after dinner challenge is to get the stuff off his face. He does not like his face washed at all. It is almost a showdown at that point to see if mommy wins or the food wins. I go in for the quick rub down and generally I'm blocked. I almost have to do the sneak attack to get some of it off his face. All and all, really what's a little mashed potato hanging out in the eyebrow region really gonna do?!?! So he saves his food on his face. It will all be okay. 
I can only imagine what my sweet baby O is thinking about. I love his toothy grin and his belly gut laughs. His warm smile full of food from one side to the other is what makes my day. So a little corn in my hair just means my boy is eating and that makes this momma happy. 
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    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.

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