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the thief of joy is comparison June 26, 2010

Posted by caizooka in autism, autism parenting.
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Oh, how I ponder this quote. Often.  When it is just us in our house, with no external influences or judgments, joy is imminent. Sure, there are the difficulties that ensue upon us that we muddle through and eventually find even more joy. It’s when we compare ourselves to others that we start to question the joy that we are feeling. Why do we let that happen?

Yesterday was Oliver’s graduation from his Pre-K class. It seems like we were just sitting in that same room watching Julian graduate. That was 8 years ago!  To preface the situation leading into graduation, our week has consisted of total craziness. Emil has been sick with a fever and has been screaming. (Yes, literally 3 full days of brain numbing screaming and parental worry will zap the life right out of you!)  It was also the first week of our incoming 8th grader’s summer break where the tone of the summer is set. Buttons pushed, check; voices escalated, check; utter teenage madness, check; questioning what I’m even doing as a parent, check check. We had Oliver’s Pre-K graduation from his other school program on Tuesday and it was great. He wore his purple graduation cap with his peers and was seemingly blissful about the whole situation. It was outside on a sunny day with just a few classmates and parents and teachers.

I don’t know why, but Oliver has been amazing lately. Great about talking through disappointments and changes. I’m so proud of him and thoroughly happy with his progress. I really thought that we had struck some magic cosmic balance in our world. He is doing fabulously well on his gluten-free diet, too. Before he tries anything new he asks, ‘Is this gluten-free? Because gluten-4 makes my tummy hurt’. And, if something does have gluten in it and he can’t have it he has been fine with that. He’s done far better than I would have ever imagined.

So, we went to Oliver’s graduation last night expecting that he’d just be fine. That turned out not to be the case. He had a complete meltdown and would not participate in the least. We had the perfect combination to get in him through it with Daddy and his favorite teacher guiding him but it was just not going to happen. We spent most of the time in the classroom while the graduation was going on in the other room. Finally, he managed to go and watch with some serious patience and gentle guidance of his dearest teacher, Akiko, and also Daddy.

I was/am so disappointed in myself for being so overconfident. Thinking that he is ‘better’ lately. Not anticipating that he needed to be there a couple of hours early and coaxed through the entire process. What was I thinking?! I clearly just plain wasn’t thinking straight. But, what I let myself do was self-destruct. I rarely cry in public but I couldn’t seem to turn the faucet off.  It started when I saw all of the graduates in their caps and gowns with their smiles in tact getting a group photo taken together underneath the brilliant banner that read, ‘CLASS OF 2010’.  They had all been creating together for the past few weeks in preparations for the event. All of the moms and dads were proudly taking photos of their kids. Oliver was in the bathroom crying and refusing to put on his cap and gown or even participate. Ugg…another group photo without Oliver in it. Already he isn’t in any of the class photos because he wouldn’t join in. So, here it is, MY expectation that he would participate. Leave a record that he participated and was a part of the group. Next there was his empty chair in the front row that read, ‘Oliver’. More tears. Then there was the look of other parents that said ‘what’s wrong with your kid?’ (not many of them know about Oliver’s autism) I felt the waves of future sadness and grief coming at me full force. Why did I have to go there in my head?! Sure there is a certain amount of grieving that takes place in this process of acceptance, but if I had removed the comparison to others from the equation, as well as the ridiculous expectation that I had set up, this might have been a fine occasion.

After removing myself from the situation to have a mini sob fest, I returned to sit with my husband, my kids, and my parents. The teachers handed out long stemmed red roses that had been lovingly wrapped in lavender tissue and a ribbon. The kids gave them to their moms and said, ‘thank you’. The look on Oliver’s face when he handed me his rose was that of pure love and pride. It is a memory that no group photo could capture and will be forever ingrained in my heart. It was at that second that I felt like a total idiot. Why did I have to let the doubt, the comparison, the expectations in?! He is perfect just being Oliver. I have to revisit my goal in parenting…to help and guide my children to be the very best THEM that they can be. Yep, I think that it boils down to just this. Seek the joy and embrace it!

Oliver the Shaman? June 17, 2010

Posted by caizooka in autism, autism parenting.
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Thanks to the direction of a few friends, I watched a fascinating special on PBS, Independent Lens called ‘The Horse Boy“.

Honestly, the beginning was intense and quite painful to watch. A sweet autistic boy screaming uncontrollably on a mountain top in Mongolia. Next you see the parents getting whipped whilst kneeling on the bare ground, by the shaman; but are forced to withhold screaming. Brutal. Are they crazy? I don’t follow. I am starting to dismiss this family as ‘nuts’, but I keep watching because I am intrigued and trying to fathom why someone would do this to themselves. I soon catch on. I understand the primal need to do ANYTHING to help your child. I don’t really connect with the mom at first because she seems distant and removed. But, I end up crying with them. Uncontrollably. There is a definite change in the boy in the documentary where the boy went from screaming to playing and laughing. Did they just push this kid so hard that he cracked and gave in to it?

Throughout the documentary, they wrangle with many, many issues. Rowan had a really difficult time on their journey. He refused to ride the horse, and opted for the bus instead. He had potty issues. He went into this having potty training issues, as do many autistic children. The family heads through the interior of Mongolia in an old VW bus, ultimately arriving at a nomadic encampment at a tribe called the Duka Tribe. Apparently they are known to have unique healing properties. They have to travel entirely by horse from then on. It’s hard for the parents to get Rowan on the horse. Rowan had been battling riding on a horse the entire trip. He finally liked the horse again. I’m happily surprised to connect with Rowan’s mom. I see that she is made from incredibly strong, versatile fabric. She plows through and guides Rowan in a sweet and gentle way.

The finally met with the Duka Tribe’s shaman and he had a very fascinating connection with Rowan. He told them that Rowan would become gradually less autistic over the next 3 years and that the potty issues would end today. And, indeed, it did. When they rode away and down the mountain, that was when everything began to change. He actually pooped on the potty. (for those of us whom have had to struggle with this, you know what a true triumph this is!) He was running around playing with the other kids. He actually bonded with their guides’ son who was about his same age. They didn’t speak a common language, but they were communicating. He was enjoying the horse riding with his dad again. There appeared to be a breakthrough.

People that are shamans typically have had a life of suffering from neuropsychiatric symptoms. They have special senses and feelings that guide them differently than others. They aren’t elected shaman from birth, they become it because of their symptoms and their clarity. They become guides for their tribes. I’m not surprised after watching this and really taking a significant amount of time to wrap my brain around this concept to see the truly unique connection between the shaman and Rowan. It sparked a further interest in me to seek how other cultures accept (or deny) people whom are different neuro-psychologically. One psychologist in the documentary talked about autism and how some cultures determined that these people have an illness. Other cultures say that this is simply a different type of person and there is a prescribed role in society for them. He further elaborates that we are one of the few societies that treat neurological and psychiatric differences by creating institutions where we actually separate people completely from society. This makes me think and think and think… are we trying to change them to be something that they innately are not? Trying to make them like us. This really offers some pause.

I do love Rowan’s parents sense of wonder and joy. It is captivating and true. I sympathize with them when I see their son Rowan struggling. It’s taken me a long time to ponder how to write this blog entry. I hadn’t been able to figure out why until now. I didn’t understand how the parents could be so removed, yet so connected at the same time. I’ve had some clarity on that lately. I realize how numb to the chaos I have become. Sometimes it’s too much. I simply can’t react to every plate being hurled at my head, every insult screamed at me, every stressful situation that I have to choose how to navigate. I’m numb to it, and it saddens me. Don’t get me wrong, I feel happiness and everything else, but when chaos ensues, I have to filter differently. I get now why those parents appear to be disconnected. It’s a matter of survival. To be able to see clearly through the haze. So, when Rowan is having a meltdown, I now feel his parents’ panic and fear that I feel when Oliver is having a meltdown. Rowan was diagnosed with autism when he was 2 and he was 5 in the documentary so the parents had 3 years of dealing with their reality. (we’ve had less than one year since Oliver’s diagnosis)

The dad breaks down at one point and questions himself. Did he make Rowan do too much? We all question our decisions and reasoning when our parenting decisions aren’t working out as we had hoped. Rowan’s dad, Rupert is honest and true to himself. I love it when he says that he’s a better father because of Rowan’s autism. He further explains that Rowan’s autism forced him to listen to his son. I can tell you that I wish that more parents were more in touch with their children like this. To not take them for granted and to stop and listen and learn to love your child. What a wonderful thing.

The dad, Rupert, asked in the end of the documentary if Rowan was cured of his autism. No, he answered. But, he was healed of some of the symptoms of it. And, from the outside looking in, it appeared as if Rowan, and his parents looked happier. That is what we are all striving for, isn’t it?

why walk when you can run, or skip, or gallop June 15, 2010

Posted by caizooka in autism, autism parenting.
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Watching my kids the other day I realized a funny thing…Oliver skips. Emil gallops, and Julian drags his feet (he can’t help it, he’s a teenager), but when he was their age he would always run. I think that it’s a funny way to look at them each individually. I didn’t teach any one of them to do what they do, they just do it. One of the biggest surprises in being a parent is realizing that your kids are just who they are. They might look like their parents, have mannerisms like their parents but they are inherently just themselves. Not only is it surprising, but it is also sometimes the hardest concept to realize and come to terms with. I learn a huge amount from other parents. I’m blessed to have a brilliant, well-versed parent population to claim as friends and mentors. The more seasoned parents have a MUCH better perspective on this than I do.

I think a lot about being hungry. What that means to grow up being hungry. To be so hungry for something that you’ll do anything to attain it. You’d try so hard that you can’t even see straight. We didn’t grow up hungry for food, but we grew up learning that hard work had it’s place to get where you wanted to go. I don’t see alot of kids who are growing up hungry.  Of course not. We worked hard to go to college, and to provide for our children. That was our goal growing up, to live the American dream. Now that we are blessed and living that, I sometimes feel like I’m doing more damage than good; providing too much. Do you withhold things from your kids to instill hunger so that they have desire? I struggle tremendously with this. Being raising half Japanese, in a time when there weren’t so many of us, gave me adversity. Going to a school where the general population was extremely wealthy when we were not, gave me adversity. Education, traveling, and living in foreign countries and learning foreign languages provided me with perspective to learn how important adversity is. I want my kids to be happy and healthy. I don’t want them to starve, but I do want them to have passion. Deep passion for something. Passion so deep that they will do anything in their power to attain it.

So, if our kids are each themselves, where do we, as parents fit in as they mature? I guess that as they grow up that they’ll still need direction and guidance, as I still seek that in my own parents. I want to give my teenager space to be himself and learn from his mistakes, but don’t want him to get hurt.

What is the right mix?! I guess that I’ll have a lot of opportunity for trial and error. Especially more so now that summer is nearly here! One thing for certain, having our sweet Oliver in our family gives us all perspective and makes it real. Some days more real than other days 😉

a trip to the pet store June 1, 2010

Posted by caizooka in autism, autism parenting.
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We’re having a string of good days here!  Friday, Mom and I took Emil and Ollie to the pet store for an outing. It was pouring rain out and we needed a low key adventure that did not involve a lot of people and too much noise (the less external sensory input the better!). It was great fun! Emil ran around like the crazy dude that he is. He most liked the mini-hamster. Gross. We spent a great deal of time watching the dogs being groomed, the lady cleaning out the cat cages, and the guy removing the dead fish from the fish tanks. Oliver’s birthday is coming up this month and he’s being really funny about it. He keeps on telling different people what he’s getting for his birthday. Yesterday he told Teacher Heather that he’s getting a HUGE trampoline for his birthday. Hmmm…news to me! When we were at the pet store, he started to get fixated on buying a fish tank with real, live fish in it. So, I said, maybe for your birthday.  That wasn’t met with a warm reception. I thought that a meltdown was coming on. The body language said, ‘meltdown is coming’. I don’t know why, but I was able to coax him out of it by asking him to help me choose a dog treat for Libby. For some miraculous reason, he complied. It’s so strange how on some days he’s so easy to redirect, and on others you can’t redirect him at all.

The funniest story…when we were watching the cat cages get cleaned out, a true cat lady came up and started talking to Oliver. Oliver was in a super chatty mood and was enthralled with the cats. The lady asked Oliver if he had any cats. He went into a litany about our cats. This is most funny because we have no cats! He and the cooky cat lady were one with each other as they discussed their cats. But then Oliver said that his mommy’s cats died 4 weeks ago. Cooky cat lady was devastated!