i have faith May 9, 2012
Posted by caizooka in writings.add a comment
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.
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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, 2012
Posted by caizooka in autism, autism parenting.1 comment so far
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
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.
perfectly autism.
back to school September 13, 2011
Posted 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, 2011
Posted 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, 2011
Posted 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, 2011
Posted by caizooka in autism parenting.Tags: community, prayer, tbi, thank you
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this Yamato Damashii June 5, 2011
Posted 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, 2011
Posted by caizooka in autism parenting.add a comment
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.
the mystery of autism May 24, 2011
Posted by caizooka in autism parenting.Tags: autism, autism parenting, mystery of autism, spacing out
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Well, there is sure a lot of mystery involved in the world of autism. A lot of it revolves around the mystery of what causes this. Why is one child so much more profoundly affected than another? Why do some kids get better? Why do some kids get worse? Why are some kids verbal, why are some non-verbal?
The mystery of autism that we are currently embroiled in is, WHY on some days does O just bounce out of bed as happy as a clam, ready to face the day, doing his best to be flexible in situations that he doesn’t want to? Then…the very next day we’ll settle in for a week of complete inflexibility. Very rigid behavior that reminds you of how darned daunting this autism thing is. Every tactic that was working for you is completely back firing in your face. Every boundary set is obliterated. So much screaming. He seems like he is stuck. He is. He seems stuck in his head. Like the thoughts that he is trying to process aren’t making it to the surface. He seems like he is in pain. He looks confused and bewildered. He doesn’t look happy. He is reactive. He is volatile. He can be violent. He spaces out a lot. Is he just kinda checking out to process? Again…it’s a mystery. Because just as soon as you start to accept this as your new reality, he turns on a dime and says, ‘oh, sure, I’d love to have dinner’ and seems to snap out of it, when two minutes before he was throwing it across the room at you while kicking you in the stomach.
Someone unravel this mystery. I’m ready to find out what the real deal is here.
Today was beautiful. O was in great spirits. He was amazing and was full of words and thoughts and comprehensive stories. It’s weird. Almost like he had to go through that phase; had to work through something to get back to us. He’s a different kid today than he was yesterday.
that sigh. May 23, 2011
Posted by caizooka in autism parenting.Tags: breath, fear, ptsd
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I remember that sigh. I heard it the other day when I took a deep breath in, then out. On the tail end of my inhale I felt that shake. That same shaky breath one gets after crying for a few hours or a few days. It’s like Grandpa Fred and I were breathing in sync. My Grandpa Fred had that shake in his breath whenever he took a deep breath. You didn’t just hear it, but you could feel it. It always haunted me and drew me into him at the same time. He endured much tragedy in his life and overcame many an adversity. His wife died when she was only 39. He raised 3 boys on his own. He lost his youngest son when he was only 29. He came over from Japan on his own on a barge when he was only 11 years old to join his parents. Then his mom died of influenza. His dad moved back to Japan. He kinda raised himself. He was interned with his new wife and young son to Gila Bend Internment Camp for the duration of WWII. You would hear all of that in his mere breath when you listened carefully enough. I have heard it in my own breath intermittantly these past months but have ignored it entirely. Willingly. It’s terrifying.
Ahh…that sigh is the sound of life slipping through your hands and it represents your complete inability to do anything about it. It’s the pain, suffering, and trauma wrapped up in the inability to breathe fully any longer. Afraid of what might happen if you do. Where there was once a smooth, gentle exhale, a choppy, interupted sigh has replaced it. Not only that. The oxygen flowing through your body now comes at you in a different flow. It’s neither here nor there. Sometimes (when you hold your breath) oxygen is restricted. Sometimes (when you hyperventilate) although the repetition of the breaths, there isn’t enough oxygen. Ugg…just need some more oxygen it seems.
I never knew what it was until now. As I muddle through this phase, I hope to hear less of that shake in my breath. I hope that I won’t have FEAR written across my face when my kids do something scary. I hope that I can get out of this, ‘hope for the best, prepare for the worst’ mentality that I’m entrenched in. I hope that I can be more carefree again. I hope that the shake in my breath goes away.
yet another acronym May 7, 2011
Posted by caizooka in autism, autism parenting, gfcf, tbi.Tags: ptsd, tbi
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Well, it seems like I can add another acronym to my balancing act…PTSD. We’ve barreled through ADD, ASD, IEPs, OCD, TBI, CT Scans, MRIs, EKG, CBC, CUTE (Crazy-Unpredictable-Toddler-Exhaustion…just made that one up!), ABA, SPD, DRI, PICU, GFCF…
…but coming home from the hospital with J from his last brain surgery, was such a relief that I let down my emotional guard down long enough to take a deep breath of fresh air but it was met with extreme resistance. Shaking, crying, sweating, screaming, and more shaking. These fits passed through me for no apparent reason. Sure, there are some obvious triggers, but it came on like waves. Violent waves met with a strong, sand bagged levy. The first two weeks were miserable. One constant panic attack. Then I thought it was over. I was proven wrong as now it comes and goes intermittently.
I am going with this. If I fight it, I feel like it’s going to be worse. So, I’ve eliminated any outside contaminants…no alcohol, no fingernail biting. I need clarity. Pure, raw thoughts and reactions and feelings.
Resisting my strong desire to numb these emotions and uncontrollable feelings with a delicious glass of chardonnay, I’m left to face the demons on my own. The emotions that I wasn’t able to deal with when I was in survival mode during those first few months. Unable to let down my guard enough to sleep. Holding it together. Barely holding it together yet at the same time wound tight enough to repel any other emotions that might seep into the stature that I was trying to keep. That was necessary to keep.
Now that I’m at the 6 month mark, I’m able to process this. I’m able to finish this post that I started 3 months ago. Fits of panic that rush through me at any given time without warning have diminished some. They still do come in waves. There is no warning. The middle of Costco, playing at the park with the little guys, or making dinner. I am completely powerless to them. I’m thankful that I’ve been able to barrel through this. They will decrease in time. I’m sure of that.
Prior to this change in our world 6 months ago, anxiety was not something that I had experienced. I had some serious anxiety about time. Interestingly, now that has completely disappeared. Time is a whole different concept. Yes, I’d love to get places on time, but the obsession with being on time has been replaced with an anxiety of just being there.
One shining moment April 18, 2011
Posted by caizooka in Uncategorized.Tags: inspiration, luther vandross, march madness, pure, sports
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There is something magical about the whole March Madness thing. The raw excitement of college basketball and the pursuit to be the best. In every drip of sweat that hits those hardwoods, I can envision the years of hard work, the dreams of each player, their families, their communities, and the amazing determination that it takes to get there. The celebrations of the victories, the lessons learned in the defeats. The hunger that each one of them has in them and what they’ve had to sacrifice along the way to get there. How many players with the same athletic ability who weren’t as hungry, as determined, and willing to sacrifice as much, did they pass to get there? Why is March Madness so bewildering? For me, it’s the small teams from universities that I have never heard of, outplaying big power basketball powerhouses. It’s the traditions, the fortitude, and the respect that each player, coach, and fan has for the sport itself. It’s the building of the excitement. It’s so darned captivating and inspiring!
The players haven’t yet experienced the spoils of what the NBA provides. None of the riches, the power, or the image. College basketball is all about the sport. It’s about competition. Yes, there are some big attitudes that come in swinging, but there is the ever humbling effect of an undeserved injury, an ‘easy win’ that was lost at the buzzer, a dream lost, that keeps March Madness such a wonderment.
Then, as if it wasn’t exciting enough…after the winner is finally decided comes the song. The song of all songs. Flawless in it’s endeavor to capture every human emotion painstakingly drawn out of every viewer as we embraced these 68 teams, whittled down to 32, then 16, then 8, then 4, then 2, then 1. We felt their hopes and dreams, cried for them in their defeats, cried with them in their victories. Then Luther chimes in with…’Feel the beat of your heart, feel the wind in your face, it’s more than a contest, it’s more than a race…one shining moment, you reached deep inside, one shining moment, you knew you were alive…’
Every year, it’s a sobfest as I sit on the edge of the sofa, glued to the tv waiting to see the video and hear the song. Pure magic. All of the years of watching, remembering the moments we’ve borne witness to in years past…the victorious moments … Grant Hill to Christian Laettner at the buzzer to win over Kentucky in 1992…or the unbelievable ones … Chris Webber’s timeout incident in 1993.
PS: I am choosing to live in denial of the fact that there is anything that taints the beauty of March Madness. If there is anything that isn’t pure and sportsmanlike about it, I can’t hear it 
PPS: Thank you CBS for bringing back the Luther Vandross version of ‘One Shining Moment’!!
catching on things March 31, 2011
Posted by caizooka in tbi.Tags: community, kindness, tbi, we believe
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All of J’s friends wear their J wristbands. His friends at his school decided upon the saying. It says ‘We Believe’ and on the flip side it says ‘In Julian’.
Since it is made of rubber, it can catch. I was typing away this morning and then moved my hand. It caught. I took it off, mindlessly, and put it next to the computer and found myself staring at it. My heart skipped a beat, I held my breath. I realized how much I loved the fact that it caught on the desk and how I had to stop what I was doing to consider some of blessings that have been bestowed upon us in these past months.
I wear mine all the time. It is a constant physical reminder of the love of a community for one of their members; of how strongly this love can change a person and everyone in their periphery. In this phase of J’s recovery, this feeling of enduring compassion, inspiration, and friendship for a buddy and his family has been a life changing experience for many of us. So, yes, I love the fact that my wristband catches on my desk when I’m typing. The inherent kindness and generosity of everyone in our community is contagious. You might catch a case of it if you are careful!
pushing people, people pushing March 5, 2011
Posted by caizooka in autism, autism parenting, tbi.3 comments
I have realized that I spend most of my time trying to convince people to do something that they firmly don’t want to do. Autistic people want to adhere to what is familiar and have extreme tendency to be intolerant of anything outside of their usual focus. We spend a great deal of energy trying to push O outside of his comfort zone. If it were up to O he would eat the same cereal every single day. We would get some seriously epic meltdowns when that one cereal ran out. So, we make him try different cereals. We get a lot of resistance. A lot. Yet, we push and push. Get a lot of screaming and yelling and resistance. Sometimes I wonder why because it would be easier for everyone if we just made extra sure to have that one cereal on hand. Yes, easier now, but in the long run, no. What if General Mills stopped making Gluten-Free Honey Nut Rice Chex? So, to add some variety, Peter bought Gluten-Free Cinnamon Rice Chex this last time. When I saw him take the box out of the grocery bag, my body tensed. I felt the anxiety of having to absorb the meltdown that would surely ensue the next morning at breakfast time. Surprisingly, it didn’t. There was a moment of hesitance, as if O was saying to himself, ‘Hmmm…this is different…how am I going to react?’, but then he tried it and liked it. THIS is why we push. 6 months ago that morning would have looked vastly different. He wouldn’t have been able to switch gears. It would have escalated into a physical, mental, and emotional break down for O. For us, it would take the wind out of our sail for the rest of the day.
Dealing with a TBI of a 14 year old boy is no different. Constantly trying to sugar coat everything to get J to do things that he doesn’t want to do. More pushing. More resistance. I understand that laying on the sofa, watching NCIS all day is easier. Easier for him. Easier for me. Yes, there was a time for that, where I let him do that. I just was so happy that he is here with us, that I didn’t want him to do anything that he didn’t want to do. I certainly didn’t want to inflict any pain upon him. Now that time is over and it’s a new phase. The pushing phase is underway. It is not fun, but hopefully as he realizes that he CAN do things, we will get less resistance and have to push less.
Of course, then there is always our almost-3-year-old E, who just watches these situations unfold before him. Observing and absorbing…and calculating. He is as sweet as sweet can be, but he is extremely smart and keenly aware of when his parents are worn down from all of the pushing. He knows our weaknesses and vulnerabilities. He plays them. And he does it well. It’s quite a skill. He can be quite a tyrant at times. Again, because it is easier now, we have let it happen. But, I’m onto him. He pushes back in a way that is different from the others because it is pre-meditated! Yes, he has the potential to be a pre-meditated manipulator. But, he has empathy. A huge heart that is oozing empathy. It is our job as his parents to hone this and realize that he has potential to be very smart and can anticipate situations. Yes, turning the negative into a positive. A necessary skill of a parent.
When I originally wrote this post, I was worn down. I didn’t have hope. Today, as I rewrite it, I recognize what I wrote before and hope that when I’m faced with these emotions next time, that I will find it in me to push myself in a more positive direction. Yes, more pushing. Perhaps even shoving. But, it will be better in the end as I will have achieved something different than I usually would. There is that word again, ‘usual’. To me, ‘usual’ means boring, familiar, assumed. It is a beautiful thing to not be usual, but to know when it is necessary. Sometimes familiar is good, but boring and assumed is not. Therein lies the continued desire to push. To forge ahead. To challenge myself to be a better person. A better parent. To raise people who have a desire to challenge themselves to be better people.
As a reminder, I will include what I wrote. (Warning: it is negative)
It’s an unbearable cycle for a parent to participate in. I want out of this cycle. I cannot partake any longer. To spend all of my energy trying to better the lives of the people but to receive nothing but resistance, screaming, yelling, hitting, kicking, complaining, scoffing, stomping, and utter rudeness…it’s too much for a soul to bear. I throw up my white flag.
autism and insurance, or lack there of in Washington State February 17, 2011
Posted by caizooka in autism parenting.4 comments
As I have been ignoring a great percentage of emails, especially listservs, over the past 3 months, I’ve finally started to realize that a large amount of them are about the Autism Insurance Parity Law that is currently sitting in our state legislature. It’s stuck in committee. It has taken a lot of people a lot of effort to even get ‘Shayan’s Law’ into committee. Now it sits there, awaiting to be scheduled for an executive session vote. If it doesn’t get voted out of committee by Monday, February 21st, it will die there.
So, what does this really mean? Currently families with an autistic child pay a great deal of money towards autism therapies. Insurance DOES NOT COVER THESE THERAPIES. That’s right. We are paying straight cash for these therapies. Our favorite ABA therapist we cannot send Oliver to see. We cannot afford $85/hour for her services for a sustained period of time in addition to all of the other therapies. Not many people can. We did last year and our insurance denied our claim. Microsoft is one of the very few employers that actually covers ABA therapy. At 80%. The disparity in who is able to afford autism therapies and who is not is something to consider. Yes, the world is not fair, but does it have to be this cruel? I know of a lot of kiddos who have been able to gain some great skills from autism therapists. They are fortunate. We feel so fortunate to have fallen into some fantastic therapists whom have given Oliver some amazing social skills. The rest of the kids rely upon what the public schools are able to provide, when they are able to provide it. They are less fortunate.
The State of Washington has Full Mental Health Parity and laws that state coverage for neuro-developmental treatments. It is not law that these benefits are extended to individuals with autism. Here is why:
-The treatment will only be covered if deemed rehabilitative/short term (autism is a chronic healthcare condition).
-Treatments are considered educational for patients with autism and is deferred to public schools.
What Shayan’s Law provides for is that autism treatments be covered to the same degree as the Washington State mental health parity. So, basically, telling the INSURANCE COMPANIES that they have to cover some of these costs. This should be a given. There are some links below that state some basic data to describe just how expensive autism is.
So, what can we do to help? I’m not a super grass roots, call your Senator kinda person. I should be, I know. I did call the people on the Senate Committee that is holding this bill hostage. Will that help? I don’t know. I hope so. I pray so. The advocacy groups are saying to call these folks and leave messages. Yes, I hope that will help. If you know any persons of power in Olympia law/advocacy world, now would be an excellent time to reach out to that contact. As I have learned, you give when you can, you receive when you can. I ask you to ask of those of whom might be able to influence this vote. It is very, very important. It means a lot to a significant amount of people. 1 in 110 in fact.
Much gratitude for your support,
Karen
Senator Karen Keiser, Committee Chairman (360) 786-7664
Conway, Steve, Vice Chair (360) 786-7656
Pflug, Cheryl (360) 786-7608
Becker, Randi (360) 786-7602
Carrell, Mike (360) 786-7654
Kline, Adam (360) 786-7688
Murray, Ed (360) 786-7628
Parlette, Linda Evans (360) 786-7622
Pridemore, Craig (360) 786-7696
Here are some wonderful websites stating exactly what is at risk here:
Fact Sheet about Insurance laws – Washington Autism Advocacy
Shayan’s Law information – Washington Autism Advocacy
