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making some strides November 17, 2009

Posted by caizooka in Uncategorized.
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Some good progress made in the autism realm and O.  Had a great social skills playdate with our buddy M on Friday with a fantastically enthusiastic teacher named Chelsea.  She’s amazing.  She’s also a teacher at the EEU and just really has such an understanding of where these guys are at.  Also, today we had another social skills playdate with another amazing teacher named Heather. Yes, we’re moving in the right direction.  O has been so amazingly engaged lately.  It’s been so great to see him interact so nicely with people.  He is a riot. Super duper funny. He doesn’t try to be.  He just is. The way that he utilizes the borrowed words from movies/shows/other people is so amazingly witty and his timing is pretty good, too.  He has us in stitches a great deal of the time. We also met with our fabulous pediatrician and had a great conversation about O. Where we are at and where we are going.  We reviewed his blood tests.  His IGE showed a sensitivity to egg whites and cashews and showed that he was low in magnesium and vitamin D. His IGG showed that he is sensitive to wheat, soy, cashews, peanuts, and pistachios. All in all, we came out of the meeting with the understanding that his gut needs to be stabilized. He also might have some left over sensitivities because of the e.coli. We’re going to do a stool culture to look for a measurement of the flora there (nice…).  Looking for different yeasts, and other things so we know better what is going on there. After we get that done, we’re going to move into the realm of a no gluten/no dairy diet. I know…it sounds drastic.  I have to try though.  I don’t want to ever think that we didn’t try that route.  What if it makes a huge difference? We have to give it a fair shot. I know the impact that it makes on me when I’m closely following a gluten free diet.  I was able to completely stop taking the rheumatoid arthritis medications that I was on last year.  I know that even after a single serving of wheat product that my joints hurt.  I know that this is going to be somewhat difficult on our family, but to be honest, we eat a lot of rice and I feel super lucky that the closest market to us is PCC and has so many fantastic options for a gluten-free family.  So, O is going to be on a cal/mg supplement, vitamin D supplement, omega-3s, and probiotics. Cross your fingers! We’re going to ease into this, not go cold turkey.

One thing that has changed a lot lately has been Oliver’s sensitive side. As everything that is Oliver, it is pure.  When emotions come out of him, they are completely unfiltered, untouched, and 100% undiluted. When sad emotions come out of him, I promise that you will cry, too. When happy emotions come out of him, you will laugh hysterically with him. When he is angry, you will get angry, too.  Ugg…  so lately he has become very empathetic.  I was happy to see this when it first emerged, but I have mixed emotions about it as it means another thing…that Oliver cares what others think about him.  I have always maintained that Oliver doesn’t care about what others think about him therefore he will be okay, he will be able to be 100% Oliver and be happy with that.  But now I’m worried.  I hope and pray that he won’t allow others opinions and criticisms (and later bullying) of him to affect him in a negative way.  Yes, I certainly want Oliver to communicate with others ‘normally’, but I also want him to be able to be himself and not be so affected as I know that one of the largest problems with higher functioning autistic and aspergers children/adolescents is that of depression. I dread that. I continue to hope and pray that he will be saved of that. When Oliver gets in trouble (ie…for hitting Emil over the head with a metal train) and is told that what he did is not okay, he gets very upset and says, ‘I’m a very bad boy’. He then grabs his stuffed doggies and tells them it’s going to be okay and scolds them. He gets stuck there though and I’ve learned that it is not wise to try and pull him out of this before he is good and ready. He seems to need time to stew. It’s as if this new emotional side of him overwhelms him. His sad sads and happy happies is the way he seems to roll these days.

I don’t think that I have enough perspective on raising boys. I don’t understand why they have to hit and kick each other to feel connected. I have read about it, sat through lectures about it, been counseled about it, but I still don’t understand the need for it. This is how I see it…Julian wants to connect with his brothers, so he teases them, tackles them, and they either love it or hate it. Regardless, they are all screaming and someone ends up crying on the floor. I secretly admit that it is kinda cute to see Mr. Super Spicy Attitude, Emil, get in there and try and hold his ground.  Mark my words, he is a force to be reckoned with. Since Oliver cannot interpret social cues, he has come to understand that any action that Julian has towards him is antagonistic and when Julian is being kind or affectionate towards him, he will hit him. Hard. It has become such a cycle. I just want to keep all of the kids separate lately. Emil and Oliver are constantly hitting each other. I don’t believe that they are behaving in a way that is indicative of who WE are. How much influence does a parent really have upon their kids? Some? None? A lot?

I was thinking back about where we were at with Oliver at this time last year. I remember being all consumed with my worry. There was no definition of what was going on with Oliver. He was far less verbal. He spoke in mini-phrases and demands. He spaced out A LOT. He cried and screamed a lot. It was so scary. When I was watching him participate in his social skills session yesterday it struck me how much his personality has emerged. It’s as if his personality was hiding last year. For sure his school at View Ridge has helped, and his continuing love and support from his other school has helped, too, but I think also we have been able to identify some triggers. Taking him off of all of those asthma medicines helped, too. The Autism Speaks logo is a puzzle piece. It makes so much sense. It really is about finding the right pieces and seeing how they fit together. Can’t fit a circle into a square. This is a true statement, however when trying to figure autism out, I am thinking about how the circle might fit into the square because in Oliver’s mind, it seems to fit like a glove. The way my brain is wired, the two pieces clearly don’t fit, but for some reason, they fit for him. In this process of learning and understanding, I realize that it must be even more frustrating for him to understand our reasoning because he has worked this puzzle differently than we have. When I watch him and the way that his eyes move when he’s doing something, the wheels are churning very fast and innately differently than others. I’m sure learning a great deal about the world through his eyes. He has beautiful, dark blue eyes. I love them.

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It’s a haiku kind of moment November 16, 2009

Posted by caizooka in Uncategorized.
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The more I delve into Autism, the more I think that it is just one of O’s issues.  Each of my kids has very different issues.  Autism is just O’s issue.  It’s a lot for sure, but it’s also perhaps more defined than the other kids’.  Peter’s sister’s came to visit for 4 days and O was a total cherub.  As sweet as honey.  He just ate up all of that one on one attention. I don’t think that he had a single meltdown.  There was no one telling him no.  The girls just thought that he was dreamy. He was walking around with a huge grin most of the time.  He just adored them.  E also really attached himself to them in a very sweet, endearing way. Of course O had some brilliant sayings.  He told Dina when she picked him up at school with me, “I’m so glad that you’re here”.  How precious.

When the girls left on Sunday, everyone started to behave like themselves again.  Impulse control is not just simply not happening in our house these days.  As Dr. C put it into perspective for us, kindly…when kids hit age 13 they lose their executive skills…they become all mid-brain thinkers, like toddlers..  Basically, they’re no different than 2 year olds.  Wow, so to put that into perspective, we have two toddlers, and a pre-k autistic child at home.  ALL of whom have ZERO impulse control.  Ahhhhhhh.  No wonder!

One of my sisters in law asked me how I deal with this all.  I told her that in times of extreme stress I try and string haikus together.  I do. Somehow it makes me refocus my energies. It makes me giggle in the midst of total chaos that I’m trying to create 5 and 7 line poems in my head.  Although, at times, my favorite 5 syllable line is ‘wow, this really sucks’ and when it’s really bad, a well used 7 syllable line is ‘God save me from hitting you’.  On the flip side, there are the sweet ones, ‘Ollie Wollie is too cute’ ‘MUST remember this moment’.  Way more sweet ones than not, but it’s the ones that are churned out at times of despair that make me giggle like a school girl.  I don’t know why I think that writing haikus are funny, but I do.

I feel guilty that I’m not plowing full steam ahead into autism research.  I don’t know when I would do this. I’m stressing out about pulling together a Christmas card…when is that going to happen? Making Christmas cards is always so much fun and something that I do to intentionally slow down the pace of the season by taking time out to write each person’s card. It’s my way of wishing each person a happy holiday season. I hope that I can do it this year, too. What I need to do is figure out gifts NOW. I’m such a rampant procrastinator. We had to get amazon prime so that we could order everything last minute! Bad, bad, bad! Need to get better at this.

Udderly idiotic November 3, 2009

Posted by caizooka in Uncategorized.
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Don’t know why I want to spell utter as udder.  Just do.  I’m being rebellious as I’m sitting here at U. Village Starbucks drinking my short non-fat chai latte by myself.  Yep, all by myself in a room of strangers.  It’s wonderful. It’s been a helluva day!

Today O told me, ‘Mommy, you’re a stupid idiot! How could you quit when you were on top of your game?’ What a fascinating statement.  What exactly is that supposed to mean? Well, the stupid idiot part of the statement is nothing new. The fact that I don’t react irrationally due to this remark, just tells me how far I’ve come in parenting. ONE time, J said, ‘dammit’ when he was 5. I told him that it was inappropriate and he never said it again. Now O routinely calls me an idiot, a stupid idiot, and also says, ‘Jesus Christ’. Wow, this is upsetting.  I have seriously lowered my parenting standards! Of course I want him to stop, of course I tried to get him to stop. When you try to get O to stop doing anything it ends up being more of a battle than it’s worth so this is one battle that I have chosen not to fight at this moment.  I say at the moment because I don’t think that it’s okay, but for right now, I feel that I have bigger fish to fry. Large, deep ocean halibut from Canada sized fish.  That’s mighty big and meaty.

J is turning 13 tomorrow. Wow. I love him soooooooooooo much but boy, he’s really entering his teenager-dom with a lot of drama.  I won’t talk about specifics to protect his privacy, but he is hard, hard, hard for me to understand. I am struggling to comprehend where he is at, what he needs us to be for him so that he can be the best J that he can be. That is my goal for him. It is painful that he is struggling so. I’m disappointed in myself as a parent. How have I failed so? I’m disappointed in him. How could he not want to improve himself? Takanozomi (高望み) is a person who is always trying to set their sights on something higher, something more. Someone who will not be satisfied with the status-quo. This is who I am, my family taught me to be, my husband and friends are. I can’t understand where he fits into this. Maybe he is/will be and this is the stage that he needs to be at in order to get there on his own, in his own due time. How do I get through the day to day waiting for him to find this in himself? What words of guidance do I offer to help him get there? Is offering too much enabling him? How do I show him that I love him but am also not going to let him treat me terribly.  He is essentially telling me with his actions, ‘Mommy, you’re a stupid idiot!’, too. 2/2 kids relaying that message to me in one day. I’m sure if Emil could assert his independence in words, he’d be uttering the same sentiment. When he threw his apple juice bottle at me, I certainly felt the love.

That’s enough, Debbie Downer, move on!

So, what does O mean by ,’How could you quit when you were on top of your game?’  Not sure I want to delve into how deep a statement that is. I’m sure it’s borrowed speech from a movie/show of some sort, but the fact that he held onto that one line and told me that at that very moment often times tell me something about him. He’s kinda brilliant like that. Kinda insightful. Kinda weird, too;)

I was in the middle of an argument with J when he said that. Maybe he meant that I should not back down. Maybe he is questioning why I even engage in such altercations when I’m going to just get so upset anyways. Maybe he just really does think that I’m an idiot. That is what he called me after all. I think that I need to gain some perspective. Need some sleep.