lite it up blue April 2, 2013Posted by caizooka in autism parenting.
Tags: autism, autism acceptance, autism awareness, tbi
Today is autism awareness day. Throughout the day I’ve pondered what this means. I’ve arrived at the answer: so much! Such an amazing place to be in for kids who are being diagnosed now. There are people that are acknowledging autism. That is huge. 10, 20, 30 years ago this would have never have happened. Yet it is happening today. That deserves its own celebration! I’m constantly taken aback by the strength that those who have carried the sign, ‘my child has autism’ around for awhile now. There was a time not too long ago when the word ‘autism’ was simply not uttered. Definitely not understood. I’ve learned so much from the few who have walked on this path before me.
As much as I am grateful for today, there is something voracious that has been eating away at every corner of my soul. We are all doing so much, but, it just doesn’t seem like enough sometimes. There are days that the depth of the pain that I feel for my son who has autism is just too much to bear. Not just my own son, but the community of amazing children with autism and their families who have become my community. Some of these children have learned how to adapt and communicate within the various communities in which they exist, yet some are so grossly misunderstood and isolated. Behind each one of these children that the label, ‘autism’ is adhered to, stands a parent, or two, a family, and hopefully their own community of supporters.
Why is today so inspiring yet so unsettling then? Because, it’s not just about awareness, it’s about acceptance. It’s about us reaching out to the person next to us, regardless of what their diagnosis is, be it autism, cancer, or epilepsy…and just loving them. Being able recognize that each one of us has strengths and weaknesses and being able to eventually see beyond that to see and hear about each other. There is just so much to learn from each other. It’s an amazing feeling knowing that because of today and the next 364 days, that one year from now we will have achieved incredible steps towards more acceptance.
The gratitude that I have for those around me who continually accept, embrace, and love my family is overwhelming. Especially today, April 2nd, 2013, autism awareness day. And also on traumatic brain injury awareness day, March 13th, 2013.
tears of hope March 25, 2013Posted by caizooka in autism parenting.
Tags: autism, bing fund, hack autism, hackathon
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I rarely cry about my son’s autism these days. I do get frustrated, overwhelmed, exhausted, and sometimes sad. But tonight when I went into check in on my little Ollie sleeping, I felt tears streaming down my face. It caught me off guard.
Every night I look at all of my kids when they are sleeping. They are each so dear and precious in their sleeping states. Watching Ollie sleep always fills my heart with an extraordinary mix of feelings and emotions. When he has a tough day, it’s so nice to see him not battling with the world and to see him at such peace. When he’s had a happy day, I can see the smile lines still on his face. He always has a slight smile on his sleeping face. He is just beautiful.
My husband and I spent the weekend involved in the first Autism Hackathon for Microsoft’s Bing Fund. I was honored to be asked to speak on Friday evening. A few of us spoke to the challenges that autism presents to our everyday lives from the perspective of a parent, the child, and a few knowledgable doctors. The audience was comprised of mostly developers and designers. They confronted a topic that wasn’t familiar to them and were tasked with creating technological solutions for the challenges children with autism of different stages face. They then formed teams and worked hard the next two days on their products. Some of the developers and designers involved have children with autism and others just wanted to rise to the challenge. And that they did. They bravely assumed the daunting task of comprehending the daily obstacles that someone who lives with autism incurs. They each poured their hearts and tremendous talents into 11 very different and compelling product prototypes. On Sunday, we judged these products. It was a true struggle to judge them because every single one of them would affect so many lives in such positive ways. It was by far the nicest weather in recent memory in Seattle yet these fine individuals confined themselves to the indoors to VOLUNTEER to work feverishly on their products. Even the founder of Surf Incubator, where the Hackathon was hosted, headed up one of the 11 products.
The tears that I shed were those of hope. I was so touched by the selflessness of a community of technologically skilled and devoted souls who gathered together, committed to help a growing community of children diagnosed with autism and their parents.
I know that a lot of parents in similar shoes often struggle to hold onto hope for their children with autism. Some often get lost in the cycle of having and losing hope as they see their child bounce through what seem like endless struggles. I wish that I could have bottled the hope, passion, and intensity of the individuals that gathered this weekend. Wow.
Rahul Sood, who lead this extraordinary effort, did a formidable job of bringing his commitment to this cause forward in a dignified and passionate manner. Although he does not have a child on the autism spectrum, he knows well the challenges that society is faced with. His heart has been touched by a dear friend of his and his family whose daughter has autism.
From the bottom of this mom’s heart, I am grateful for everyone who participated. You have shown the potential of what can be by your dedication.
My heart is filled with hope.
seeking harmony February 13, 2013Posted by caizooka in autism parenting.
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In response to a question in a rather serious meeting the other day about how our lives have changed since J’s accident, it dawned upon me as I uttered the words…
‘every conversation involves complex emotions and incredibly difficult content. We don’t talk about anything other than issues related to traumatic brain injuries, autism, or behavioral modifications. It is taxing and has taken it’s toll.’
…that I’m ready for harmony, grace, and sharing good times with our family. It’s terrifying. I’m not sure why. But it is. I’ve been thinking about why that is. The last 2 1/2 years since the accident were unbelievably difficult. But, the 3 years prior to that we had been trying to wrap our heads and hearts around figuring out what was going on with our son, O. He screamed all the time. Spaced out. Screamed more. Displayed very erratic behavior. Finally, the year before J’s accident, we got the autism diagnosis.
I’m ready to look to the day in the future that I can say, ‘yep, those were some tough days, but, look at how strong we all are for having made it through them together’.
true beauty August 24, 2012Posted by caizooka in autism parenting.
This photo speaks volumes. In simple terms it speaks of a boy who is etching the letters from a gravesite. Little does the casual observer know the incredible story behind this photo. The boy who is doing the etching was granted another chance at life. The woman of whose headstone is being engraved did not get such a chance. It was 1918, Masue Kaizuka had newly immigrated to the United States with her husband, leaving her son, aged 3 at home in Kada, Wakayama, Japan to be raised by his grandmother until they could make enough money to send for him. Sadly, that dream was cut short as after caring for the children of her community members who fell ill from the influenza virus, mostly from Wakayama, she contracted the disease and died on November 8th, 1918. Her son, Masao, came to The United States on a barge by himself at age 11, 6 years after his mother was put to rest in this Japanese cemetery in Vacaville, CA. He fended for himself and made a life. A beautiful life. He had a beautiful wife and 3 sons. The boy in the photo is the grandson of his eldest son. Nearly two years ago, this handsome boy survived a tragic accident in which he incurred a traumatic brain injury. If it weren’t for the fact that he was born now, lived in The United States, near an incredible trauma center and was the recipient of the very best of the best that neurosurgery had to offer in 2010, he would not be here, etching the letters of his great great grandmother’s headstone and honoring her.
Funny how life is. If it was she that was born now, most likely she would have survived. And if it were he that had incurred his injury in 1918, he would have not survived. As the mom of this darling and courageous boy, I’m grateful for the life that my great grandmother sacrificed for us. We are forever grateful for you. I’m also so grateful that my son was given another chance to live. Yes, beauty is certainly in the eye of the beholder. Today, I smile at the beauty that lies before me in this photo. Such sadness, sorrow, grief, and true beauty. Yet I can’t help but to feel so blessed.
still stings June 18, 2012Posted by caizooka in autism parenting.
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Yep. The pain is still there. It hasn’t subsided at all. I don’t know why I think that it would have dulled in this year and a half. You get over confident. As soon as you think for a second that it’s okay. It’s okay to breathe in, and breathe out without worrying. Without having to hold your breath on the inhale, or the exhale. It’s always there. Always. Breaths are labored. There is either a subtle hold on the inhale, between breaths, or on the exhale. This is how I exhibit pain. No matter how hard I try to hide it. This is how I recognize pain in others. It’s so obvious. It’s so painful. I didn’t choose this path to be able to feel this, or to recognize this, but it is just what it is. It is there. It is glaring and blatant…and unfathomable. Yet, it is here and now. My heart bleeds for those of whom hold their breath on the exhale. I know them. I am them. Or the inhale. It’s so painful. I know you. I want to reach out to you. But, I don’t. I just try and exist and pull it together. I do stop in my tracks, pray for you, pray for me, and hope that we are both somehow pushing forward in this struggle. Against what? Against the pain. The loss.
Today it hit me when I didn’t expect it. I was cleaning the garage. The plastic container of cleats was over flowing. There were two pairs that needed to be added to the box…last year’s football and baseball cleats. I put them in the container. My hands were shaking. Maybe one of the younger boys will use them. Maybe not . I hope not. Yet, I still hold onto them. I cannot let go.
a new day June 10, 2012Posted by caizooka in autism parenting.
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Today I opened my email and nearly jumped out of my seat. My O was invited on a playdate!!! Holy Heavens, it is a big thing for us. Of course, I broke into tears. 3 year ago, I never, ever saw the day in which I saw a day in which my child was capable of playing, further more, being invited by a peer on a playmate. It makes me think. A lot. I always divide things into two piles…the things that I can control, and the things that I cannot. Today threw the equation off a bit. I do not like to give blatant control of my children’s lives to any person. But, in some respects, it was another person’s action that I had no control over that dictated my child’s life. My life. I’ll have to ponder that a bit more.
What I do know is that my child’s eyes lit up when I told him he was invited on a play date. He was truly elated. I love to see his eye lit up. But his reaction is not that of a child that craves personal connections. It was a reaction of a child that loves star wars and knew that this buddy also loves star wars. That is sweet.
i have faith May 9, 2012Posted by caizooka in writings.
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I Have Faith
There are times in your life when you are forced to stop. And listen. One of these moments happened last November when my oldest son, Julian, incurred a traumatic brain injury. When the doctor told me, ‘your son has a bleed in his brain’, the world stopped spinning. I fell to my knees. Oxygen stopped flowing through my body. No air in. No air out. The memories of what ensued after, with his loss of consciousness, the discovery of how fast the bleed was, the emergency surgery, the Pediatric ICU, the brain swelling, watching my extremely vibrant son fade in front of my very eyes…it’s all a blur.
‘I have faith’. These three words exhibit the human experience on such a fundamental level. Are you born with faith? What is it? Are you taught it? Is it something that happens to you at some point along the way? How do you know it has happened?
I’ve felt spirituality at various times in my life, in different ways. I vividly remember the intoxicating smell of incense at Catholic masses growing up. I have felt benevolence towards my ancestors when dancing in Bon Odori festivals. I have been moved to tears by many a Buddhist or Shinto ceremony in Japan. I have felt connected to God, listening to the prayers echoing throughout the streets in Cairo, on loudspeakers from mosques everywhere. I have felt reverence at a Native American pow-wow prayer. And, I have experienced a beautiful moment of hope at the ceremony and celebration of a Jewish bris.
There is something spectacular about bearing witness to people when they are expressing their faith. In whatever culture they might belong to. There is a humbling beauty in the pride of individuals performing the same rituals as their ancestors.
I used to think that I had faith because I believed in God. I was baptized, completed most of the sacraments in the right manner. I have always loved church and have enjoyed the serenity it brings me. I bask in the intellectual aspect of the scripture and am thoroughly moved by the interpretations of others. It is fascinating. I like to ponder what it means and how someone else could have reached a different conclusion than me about a passage. I like to think about the path that God must have led that person on, to incur such different beliefs. I like to challenge ideas and be a little nonconformist, but I have still always believed.
In the hospital with Julian, when I could not breathe, it was as if God was standing in my very presence holding my hand, blowing air in and out of my body for me. I never questioned His presence. I had faith that He would bring us through this. And He did.
Two years ago, after walking arduously through a definitively unpaved path, my middle son, Oliver, was diagnosed with autism. In some respects, it was an incredible relief to have terminology attached to the behaviors that we continue to endure. However, it also took me through a combative cycle of grief, acceptance and love. Bearing the burden of raising a child with autism is often times more than a human can endure. Social isolation. Confusion. Regression. Yet, because of the lack of social barriers, the love that pours out of my son’s heart is completely unfiltered. I soak it up and savor it with all of my heart.
Coming out of such experiences, one is left with a multitude of questions. Why? Why him? Why me? Why us? The answer is so simple. I don’t know. What I do know is that the larger reason will be apparent at some unknown time in the future, when I will look back and think, ‘oh…now I get it.’
The one why that I am now certain of is, ‘Why me?’ This one has become abruptly apparent in the past few years. He chose me beyond all other moms in this world to care for these children. It empowers me to know that God has faith in me to guide these three darling, yet very challenging boys. He has carefully navigated me through life, to learn the lessons, gain the strengths, and overcome my own insecurities, all for the very important purpose of being able to best support and provide for them.
With all of the tragedies that have occurred to me or around me, it’s becoming more and more apparent that faith is at the heart of it all. That voice is easier to hear, the more I listen.
Faith is about knowing that we are powerless. Knowing when to exert power and fight, and when not to. There is blind faith and there is conscious faith. There are times when both are necessary. Faith for me is also having the space and awareness to listen. Listen to the guidance of the Holy Spirit. Divinity is always present. When you tap into it and can hear it clearly, it is beautiful, poetic and strong.
There are times in life though, when no matter how quiet it is in the room, your mind and your heart are so congested that they can’t filter out the noise. Those are the times that blind faith predominantly guides me. Those moments are entirely driven by my confidence in my ability to step back and put everything in God’s hands and be willing to accept and embrace whatever God gives me.
There are rough moments in life. We all have them. We all approach them differently at different times in our lives. Combating the many unknowns of what autism has in store for Oliver and for our family is a large pill to swallow at times. But, I am not scared. I know that He will guide us and that my faith in Him will prevail through autism, as it has through divorce, through ethnic identity, through a ravishing eating disorder, through a traumatic brain injury. Whatever it may be, I have faith.
here is the pdf to the article: i have faith
here is the link to the ezine: http://issuu.com/flyingchickadee/docs/courageous_creativity_november2011
cylindrical shadows March 16, 2012Posted by caizooka in autism, autism parenting.
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I wrote this poem after being fundamentally moved by a ballet performed by Pacific Northwest Ballet. As the second of three ballets presented as New Works as a part of the 2011-2012 Season, I found it entirely captivating.
A link to New Works: New Works by PNB
Here is an excerpt on you tube: Cylindrical Shadows
random. yet expected.
perplexing. yet complacent.
chaotic. yet calm.
wanted it to end. wanted it never to end.
mesmerizing. yet subdued.
superbly intriguing. yet incredibly dull.
comfortably calm. yet enthusiastically enchanting
starkly black or abundantly white. no space for grey.
mad as a hornet February 22, 2012Posted by caizooka in autism parenting.
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I’m not sure exactly what it means to be as mad as a hornet. But, I am. It’s taken me a year and 2 months, but now I’m mad. All last year I spent being grateful and watching my son recovering, fighting, healing, and hurting. I was able to look to the positive and be so grateful to God for saving him. But, this past week, watching my baby’s body writing in pain, watching his soul hurt, his head bleed, it was like I was first beginning to understand the severity of this part of our shared journey. It makes me feel fragile and completely out of control. What this accident has taken out of us is completely inexplicable. It really hurts. I’m just a mom who has a son who was just doing something that he loved. He was playing baseball. I did everything possible to determine the right place for him to do this. At some point you just have to trust. I felt that the place that we chose was safe and a good place for him to advance himself and have a good time while doing it. My heart soared to see him happy doing what he loved to do. He loved it there. They loved him, too.
But, now, the world is so different. I make sounds when I cry that actually comfort me. My hurt shows. The pain that I feel has boiled over. This past week, for the first time, the word, ‘why’ has risen to my consciousness. I hadn’t thought of this before and it’s difficult to bear the introduction of such a seemingly simple 3 letter word into my world. But, it makes all the difference. It’s like the backdrop of the world around me has shifted from light to dark. My perspective on the world has changed. I don’t like this a bit. I don’t know how to accept it. I’m not used to having these feelings.
Anger doesn’t become me. It is not an endearing quality to anything or anyone. I’m so appalled that I have entered this state. For some reason, I am here and there is something to be learned. When I say that it took me a year and 2 months, I actually think that it’s taken me 41 years. I never got mad at my ex-husband when he never came home, flaunted affairs in front of me, left me and our young son. I just survived. I was upset and it was hard, but I shifted that energy into something positive. I knew that I had to make enough money to support myself and my son on my own. I did it. I didn’t complain. I actually enjoyed every minute that my son and I had, living on our own. We have a very special relationship because of it. I’ve always felt that God was with me, holding my hand, holding my heart through all of this. I know that He is here. There is no doubt. I know that it is He who is guiding me through this angry part of my journey. I need to let go and feel this. I’ll get through it. I will survive. I will thrive. I will help others because of it. It is what I was meant to do.
Yes, that day will come. But, right now I see red when I blink. ‘Why did this happen?’ ‘Why him?’ ‘Why me?’ Those questions have started a whole new line of questioning. I’m starting to question the why in things that have been in place for awhile. It makes me angry that I have to go through this process right now. I don’t want to. My heart hurts enough, but for some reason I’m being drawn through this. I feel accompanied by God. I know that I will come through this okay. I will show my children what it is like to shine through adversity. I will get there again. Right now I wince in the pain of it all. Trying to ingest any pain or discomfort that has been cast upon my children. They don’t deserve it. ‘Why?’ I always can find the feelings to justify the ‘why’ until now. I honestly have believed that we have been spared. Julian’s TBI could have been far worse. Oliver’s autism has become so much more manageable, whereas it could have gotten worse. Yes. I am so grateful and my heart is filled with joy for the blessings bestowed upon me. So, ‘WHY’ is there suddenly room for anger? For now, the answer is just ‘I don’t know’. Someday I will know, but right now I am feeling the need to submit to the feeling of anger.
Just after they discovered the brain bleed when Julian was still at Children’s ER, they whisked him into a special room and there were a dozen plus people attaching him to different machines, putting various IVs in different locations. There was so much commotion. I couldn’t see straight. Julian looked up at me and tears were flowing out of his eyes. He said, ‘Mama, why is this happening to me?’. My head and my heart often float back to that moment. The rest of the world is seemingly whirring out of control and all I can hear are those words and see the grief, panic, and fear in my son’s eyes. I still don’t have an answer for him. The world is still whirring out of control.
back to school September 13, 2011Posted by caizooka in autism parenting.
Tags: autism, autism meltdown, autism parenting, legos, special ed
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Got O settled into Kindergarten. He is in the same K-1 split class. 9 boys all with a variety of developmental delays; all perfectly lovely. Same 3 wonderful teachers. Different classroom. Uh-oh…something different. That threw our friend, O for a loop. He has been doing a wonderful job of self-soothing talk lately. When we walked in the classroom he said, ‘Well, this is different. (l o n g pause) BUT, I think that it could be okay’. Major relief washed over me. Okay, crisis averted there. Pretty much, he’s been doing great lately. I left the room with him delightfully happy and participating in a drawing activity.
I returned to the classroom at 3 to pick him up. He couldn’t answer a question. He was so spaced out. The look in his eyes told me that he had had too much and just needed to leave. We left. A meltdown was eminent. Just a matter of time. I told him that we could get an ice cream cone to celebrate his first day. He only wanted to go to the candy shop and get candy there. Once I gave in and said, ‘ok’, he kinda switched gears and was on board. He still couldn’t make eye contact and was spacing out, but I thought, ‘maybe he’ll come around’. Spoke too soon…major meltdown…couldn’t get him out of the car at home. Ugg.
There were only 3 days the first week. They all kinda went the same. It’s hard to see him struggling when he was doing so well.
Today I picked him up. I met one of the specialists in the hall who was telling me how well O was doing this week and just this morning what a great job he did participating in the classroom activity. But, then his main teacher came down the hall and said that O was in the classroom and wasn’t very happy. As soon as I saw him my heart melted. He was so spaced out, laying on the floor, kicking the cabinet. His eyes were overflowing with tears as he stared straight ahead. Without even blinking, the tears were flowing. His eyes look more bluish than green when he is crying. I looked away because my eyes began swelling with tears as well. I managed to pull him out of it a bit by having him show me around the classroom. We sharpened pencils together in the new pencil sharpener.
He came home and just wanted to go downstairs and play legos. He’s really been enjoying that lately.
Tomorrow’s a new day. Lets hope that it goes more smoothly.
our little bumblebee July 21, 2011Posted by caizooka in autism parenting.
Tags: autism, bumblebee, echolalia, scripting, transformers
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I had an interesting train of thought the other day when I was trying to explain how O talks. He is like Bumblebee in the Transformer movies. It makes perfect sense. Bumblebee ‘speaks’ through utilizing different song bits to express his voice. So does O. He will use a snippet of Scooby Doo, then the very next sentence he uses the words of Elmo from Sesame Street, then Ming Ming from Wonder Pets, then Ironman. It’s quite a concoction. But, to us, it’s our norm. In the beginning it’s hard to understand, but we’ve learned to decode what he is saying and hardly even notice whose words, or what character’s words he is using. The point is that although he might be using someone else’s words, we who know him well, can hear his voice. Just like Bumblebee. Although he, too, uses different songs’ words and tunes, it is voice that you hear once you know him.
the summer of boredom July 5, 2011Posted by caizooka in autism parenting.
Tags: being bored, boredom, outward bounds, parenting, summer
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Welcome to summer in our household. I’ve taken upon myself to create ‘the summer of boredom’. It’s a long story how I got here, but I’m intent upon seeing this through. I believe in the principle whole-heartedly. I’m tired of being a slave to everyone else’s schedules only to have them unhappy and irritated at the end of the day. Is it all worth it? I often ask myself, ‘what am I doing?’. Every summer until now has involved a tremendously complicated schedule of who has to be where and when. The process begins in January…what camps? …will my child make baseball All Stars?…if not, we need a back up plan…if they do, how long will they play for?…who else is in the camps you are signing up for?…will my child even be friends with them when the camp rolls around?…can I afford this?!!
There is this unbelievable pressure that you feel if your kid isn’t trying to excel at EVERYTHING at EVERY GIVEN TIME. Gone are the days that you just give you kids time to ‘be’. Make some mistakes, find their creativity, learn their own strengths, be silly, and find out what their balance of their own expectations of themselves is with that of their family’s. I know…there is the flip side of this where if you give your kids too much room that they’ll dive into the world of drugs and become hoodlums. Quite honestly though, I wonder if another group of kids might be more susceptible to this…the group that are pushed so intensely by their parents in sports and academics to achieve, achieve, achieve . They want to revolt against the constant pressure. The looks on their faces of sheer agony when they miss that goal, miss that basket, lost that game.
I feel like I’ve been given a chance to just step back, enjoy, and let my kids just ‘be’ for the summer. They all have some things to do. We got a puppy last week that we’ve been planning for. We’re learning together how to care for him. We are going to learn how to fish. We are spending time with family. J is going to an Outward Bounds trip in Maine for 2 weeks. That will eat up most of our family’s entertainment budget…but it is worth every single penny. I’m so excited for him to learn. Learn about himself. Learn what his mind tells him to do, what song his heart sings, and how his spirituality speaks to him. What a wonderful opportunity for a 14 year old boy. He’s had a year that would make most veer off course, but he has held strong. Very strong. Unbelievably strong. I want him to be proud to be himself and to create his own internal barometer for his life. I want that for all of my kids. Hence, the summer of boredom endures…learning how to be bored is something that kids these days in our world aren’t often given the space to just ‘be’. The voids are seemingly filled with passive activities like tv, video games, etc.
Growing up, we certainly knew how to be bored. We built forts, we roller skated, we made up words that made no sense for no reason and laughed hysterically. It is great to have a sense of others’ expectations and a sense of humility. But, is over programmed and being told what to do at all hours the answer? Say what you might, but what seems to be missing in the kids these days is their own voice. They are so busy ‘being’ for someone else, for something else, that they hesitate to express themselves in that.
It kills me that my kids stand there waiting for the next direction from me. I hear things like, ‘I want to play with your iPhone’, ‘I want to watch a kids show!’ ‘What are we doing next?’ ‘When are we going to …’ Dare I declare that those days are over in our house?!! Well, I’m certainly going to make a concerted effort to make a change.
We recently attended the Ironman celebration in Coeur d’Alene to cheer my sister on. (btw, what an awesome event…so proud of my sis!!!) The kids were all sitting on the hillside complaining that they were ‘bored’. My mom told them to ‘find something to do’. About 10 minutes later they were all down on the street handing out water, powerade, ice, and cheers to the passing athletes. The older kids helping the younger kids. They didn’t have to be told to do it. They did it because they wanted to. They had a really, really great time doing it, too! If they had been asked or told to do this they would have dragged their feet and revolted to no end, causing pure misery to everyone in their paths, including themselves.
I’m not a crunchy, make your own clothes, shoot your own meat, kinda gal. In case you were wondering and don’t know me. I do know that the lessons that I’ve learned the most from in life were the ones in which I had to learn on my own. The ones in which I was inspired by others and was guided by their confidence in me, given space to grow, yet not told what to do. And very importantly, I knew I was loved no matter what.
my thank you speech July 1, 2011Posted by caizooka in autism parenting.
Tags: community, prayer, tbi, thank you
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this Yamato Damashii June 5, 2011Posted by caizooka in autism parenting.
Tags: japan relief, japanese american, sushi chef dream team, yamato damashii
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The term, ‘Yamato Damashii’ is a fascinating term used in Japanese history to describe the indigenous Japanese ‘spirit’. In the Heian Era, this term meant distinguishing a uniqueness of Japaneseness as opposed to the imported cultural concepts from the Tang dynasty of China. More recently, Japanese nationalists used the term as propaganda to inspire and indoctrine the ‘brave, daring, indomitable spirit of the Japanese people’ before WWII. It fell from favor after that. Interestingly, I learned somewhere in my studies, that the most pure Yamato Damashii exists in the Japanese who emigrated to South American countries, like Peru and Brazil where they were far less impacted by the Westernization of Japan after WWII.
The other night I was privileged to bear witness to a different kind of Yamato Damashii. It was brilliant. I am star struck and and proud. Proud of my ‘peeps’. I had been searching for a way to help the victims of the earthquake and tsunami. Of all of the countries, this is the one that I speak the language of and know the culture. I had to do something! My heart was breaking by the minute. Then this amazing opportunity fell into my lap. To join the committee of The Sushi Chef Dream Team event. The dedication of absolutely everyone involved was unprecedented. In a month and a half, we pulled together quite the event. Somebody who knew somebody, who had once met somebody…yes, those were the kind of people that flew out of the woodwork to help in every capacity. Everyone worked tirelessly in the planning. Everyone just worked. Each individual humbly humbled by the person working next to them. It’s so hard to inspire people to rally around something these days without being skeptical. I know. I am, too. Who is the money really for? Who is working the hardest? Why is that person involved? What is their angle? What am I going to get out of this? There was something inherently different about this event. There was an unspoken truth to the willingness of every participant. There was a passion, a love, a deep-rooted breath that our ancestors blew into our lungs through the generations. Yes, it does still exist. That Yamato Damashii that was used to manipulate people for a different cause in a different generation, was apparent in it’s most modern, sparkly form on that beautiful night in Seattle. There was such beauty in the devotion of each participant, of each guest. A selfless need to put everyone else’s needs before yours. To elevate the person sitting next to you to a higher place. To glorify the group by sacrificing part of yourself.
I would like to send a huge shout out to my own peeps from my own hood of Bainbridge Island, who pulled out every stop to participate. Jay Matsudaira of TriFilms tirelessly pulled together an amazing, very inspired video of the pre-event and post-event. Hanz Araki graciously came up from Portland to lend his incredible talents of the shakuhachi, a Japanese flute, to mesmerize our attentive listening ears. You two are true super stars and I’m forever indebted to you and the rest of our peeps. Yes, people, the Yamato Damashii is alive in us. Our ancestors would be proud. I’m certain of it.
why did it have to be you? June 5, 2011Posted by caizooka in autism parenting.
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I’m posting this now…it was written 10/15/10
I love how you are who you are. Lost in your own world. Happy as a clam. But I look at you, and even though you are so happy, sometimes you don’t look back at me. But, it is not about me. It is about you. Why did this have to happen to you? I want you to be happy. You are. I want you to have a full life. You will. I don’t even know what I’m writing about, but there is this sense of pain as a parent to want to absorb anything that might obstruct your child from not feeling his full potential of happiness. I don’t think that having autism is going to prevent you from happiness. I just held your sweet face in my hands tonight when we were carving pumpkins together. You smiled at me. For some reason, you caught me off guard. All I could think about was, “WHY YOU? “
I see my friend’s son who has had cancer, but is doing marvelously now at age 5. I ask myself, ‘why him?’ ‘Why them?’ I just plain don’t understand why cancer had to happen to them. To him. Why autism had to happen to us. To O. Yes, I see the blessings in disguise, but the pain is undeserved. I don’t get envious very often, if ever. I feel so fortunate to have everyone in my life that I do. I’m sooooooooooo blessed. I wouldn’t change anything, or anyone in my life. But, every so often I see a family of super externally happy, super successful kids. Super athletic, super academic, super whatever. Just super. Would I want in a million years to be them? Never! But, it does make me think of why something things are so hard for some at times. Yet, some people just seem to coast through life with zero hiccups. Yes, autism is difficult to deal with, but nothing like dealing with a 1 1/2 year old that has cancer. What is THAT about?!!! Maybe some day this will all make sense, but right now, at this very moment, I just plain don’t get it. It’s a big, fat, ugly-ass pill to swallow.
I’m completely in awe of how this cycle doesn’t end. Grieve, accept, embrace, grieve more, accept more, embrace more…then start over. Rinse, lather, repeat. Just when I was in a good place with where we were all at, out of the blue, it hits me. I guess that because O is doing so well and has been able to adapt more easily, that his true autism has been more apparent. No longer, for the past few weeks anyways, have our lives revolved around if and when O’s meltdowns will or won’t happen. When it does, what is our exit strategy. I’m always aware of the easiest exit of any given place. Who will get E while one of us is dealing with O? Who will be able to stay with O while someone else takes J to his events. It takes a lot of coordination. A LOT. So many friends are on my speed dial and have so graciously helped out. Sooooo many. I could never begin to repay the debts that I owe. People have been so giving and so gracious in their love and support and help.