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Mean People Suck October 27, 2010

Posted by caizooka in autism, autism parenting.
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About 10 years ago I was on I-99, traveling downtown from North Seattle to Queen Anne. There was a very old, dilapidated red Yugo driving in front of me. There was a balding, 350+ pound man driving the car. There was no passenger with him in the car. The car was leaning significantly to the left as the car was off balance. There was nothing spectacular about this scene. A normal day. A normal dude. Just driving his car downtown Seattle. But…as the traffic slowed us down, I saw that on his bumper, his bumper sticker read, ‘Mean People Suck’.  It was slightly askew. Don’t know exactly why, but I couldn’t stop laughing. Not laughing at him, but laughing with him. At the world.  It wasn’t particularly obtrusive a saying. It wasn’t offensive. It was just plain true. And, if you know me well, you know how much I hate the word ‘suck’. Puh-lease, you can always come up with a better, more descriptive word than ‘suck’. But, in this situation, there is no more perfect way of saying it. Mean People Suck. Oh So True.

How do you describe ‘mean’? For me, it means ‘not nice’. It also means someone who intentionally leaves someone out. Excludes someone. I always try and be tolerant of people who leave someone out. ALWAYS give them the benefit of the doubt. Maybe they just don’t know. They have never experienced what I am experiencing. They haven’t walked a mile in my shoes, nor have I theirs. I shouldn’t judge them, as I don’t want them to judge me. But, I am deciding to draw the line in the sand and say, ‘at some point…people are just plain mean…they suck’. Maybe they should be accountable for their choices.

I’m just not quite understanding how a Kindergartener who is in Special Ed can get left out of so much. The Kindergarten pumpkin patch field trip day…the Kindergarten buddy system…the pre-Kindergarten get togethers.  And that’s all I know about. I’m not even at the school but to pick my son up each day.  I’m astonished by this. At first I thought it an oversight. I made excuses for them. Then, as I’m seeing more and more of this I’m beginning to wonder…what is going on? First and foremost, I see that my son is a Kindergartener at Said Elementary School. Secondary to that, I see that he is a student in Room #5. Just as I see that he is first and foremost a sweet 5 year old boy. He just happens to have autism. It doesn’t define him first.

This is tough for me. I’m not a hugely self-righteous individual. But, I know what is right. I know what is wrong. I know what is nice. I know what is mean.

And, of all days, I encounter another ‘mean’ act. WHO has a boy/girl birthday party for 13 year old and only invites some of the kids from the class of a school that an entire grade is only 35 kids? WHO? At some point I think that there is a choice that people make…nice or mean? That’s kinda what it boils down to. It’s not very grey at that point…it’s kinda black or white. Yes or No. No room for maybe in that equation.

I understand the group dynamic thing. I get that in order to make yourself feel like you’re ‘included’ that you must make other feel ‘excluded’. I get that there is no ‘us’, unless there is a ‘them’…for some people.  If only people were secure enough in their own selves to just be them. True to themselves. When will that happen? Seriously, I feel like I relive high school on a daily basis. Same choices and same insecurities driving people. That’s totally fine if people want to treat me that way. I’ve dealt with my insecurities and am extremely open about that part of me. I am an adult. I am waiting for someone else to come to the table and have a real conversation. You can say all you want to me. I would love to engage in that conversation. Playing out this situation through our kids is unacceptable. I don’t get it. It is mean. This kind of mean is intentional. I don’t get that. Ever. I guess that it just boils down to, ‘Mean People Suck’.

I would have to say as a counter to that, ‘Nice People Rule!’.  Just  think about it…when someone smiles at you, you can’t help by smile back at them…when someone extends their hand to you, you receive it…gratefully. People, lets think about that! Kindness goes a long, long ways.

names are a changing October 27, 2010

Posted by caizooka in autism parenting.
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I’ve decided to change the names of the boys in my blog. They are now known as J, O, and E. I know it will take an adjustment for you, and me, too, but I want them to remain anonymous. Please respect that if you know what their real names are.



holy art thou spork October 27, 2010

Posted by caizooka in autism parenting.
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My dear O has objected to having a regular spoon in his lunch. He has decided that he needs to have a ‘spork’. I kid you not! I forgot to pack a spoon one day (okay, more than that, but who is counting), so they gave him a spork at school to eat his apple sauce with.

I’ve looked for sporks at the local grocery stores to no avail. Hmmm…I did find some online. Lets hope that he gets over this phase soon. The Spork Phase. I love that a friend of mine told me that she’d go to Taco Time and grab me a stash.  Apparently they have a bunch there!

As O says so intently, ‘it’s like a spoon, and kinda like a fork. It’s a spork!’

a night of too many stars October 23, 2010

Posted by caizooka in autism parenting.
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Yeah!!!!!! to Jon Stewart who hosted ‘A Night of Too Many Stars’ to benefit autism education. I sooooooooooooooo love that people are gathering together to support autism education. In any way, shape, or form. Not just the diagnosis portion, which is very important and costly. But, the people who are walking in my shoes. The people who walk much more wicked paths than me, of whom I admire with great enthusiasm. The people who are living with autism. On a daily basis those who are asking, ‘what is this?’ ‘what does this mean?’ ‘how can I do better?’ ‘What of me can I sacrifice to make my child’s life better?’ (seriously…what limb do you want?….glad to provide it for you in exchange for a reverse diagnosis…)

Chris Rock LOVE YOU! I so love the laughter, the ability to have fun, love to laugh! Love to smile with my friends and share laughter. If you know me, you’ll know how important a sense of humor is to me. I love to laugh with people. Laugh at myself. Just plain love it. Just plain love to communicate with people on that level. I love how Jon Stewart can bring laughter to the table and utilize it to raise funds for autism education! Thank you!

And, wow, the videos of our autistic community that they showed. I get them. I know. One mom said, “when you bring a child into this world, you do whatever it takes to give them the best chance at a good life”. That pretty much sums up the life mission for any parent of any child with special needs. I feel so fortunate on so many levels. Some of the more severely impacted kids on the video….that is the path that I imaged us to be on. That we could still be on. Maybe tomorrow. Maybe in the future. We’re not sure. We are happy with the progress that our sweet Oliver has made, but just as it turned on a dime with us once before, it could turn on us again. We don’t know. You don’t know. None of us knows. We have faith. No matter what, it will work out as it’s supposed to.

Having community members, such as Jon Stewart, reaching out really helps! I’m so thrilled with this and have a huge amount of gratitude for these folks. They could easily be raising awareness for any other charity, any other organization, any other cause. I’m delighted that autism education is their cause. There so many who can benefit.

As Jon Stewart said in the opening statement, “tonight isn’t about curing or fight autism, tonight is about helping people that live with it now”.

Amen! Even if it isn’t you who is receiving funds from this directly…feel supported. Feel the passion of a community gathering around you to support you. Embrace that. That is beautiful and you deserve it!

And, you most certainly need a sense of humor to parent a child with autism!

love you so much October 16, 2010

Posted by caizooka in autism, autism parenting.
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I don’t know what the change that is going on with O, is but he is downright pleasant. I’m falling in love, even more, with him. He is really growing up. He is settling down. As I posted before, he is doing a fabulous job of talking himself out of situations. I’m so proud of him. I’m just downright shocked at how well he is adapting himself to his environment. He is also doing a good job of just being O. That makes me fiercely proud. I love so much how he is uninhibited and is happy in his own groove. Just watching him doing what he does makes me happy these days. The fact that he busts out into a tap dance (a la Mumble in ‘Happy Feet’) at any given time is awesome! The smile on his face that accompanies his flashy feet moves is something truly unique.

Something happened today. It was random and wouldn’t have been worth mentioning, but it stuck in my head, like superglue. The guy in the line in front of me at the super market was taking for-evvvv-ver. I was in a huge hurry (as usual), and was not willing to be patient because, after all, it IS all about me! I realized then that this man was different. My head immediately changed it’s tune. This man had different issues. He was ‘slow’. He was struggling with the payment part of his transaction. He was purchasing a 24 pack of frozen Kroger brand hamburgers, and white wonder bread. He was talking louder than anyone else, which attracted just enough attention for people to stop in their tracks and look. I just stood there, watching. Watching him. Watching the cashier’s reaction to him. Watching the bagger’s reaction to him. Watching the people around him’s reaction. Watching the people who had lined up behind me’s reactions. When he talked, he kinda spit. He was just talking, having a conversation with the cashier about the weather. The same conversation that any other customer and cashier were having. The cashier was fine and he did a great job of helping the man through the line. The bagger, a teenage girl, was annoyed. Totally perturbed. The woman behind me was huffing and puffing like her world was about to explode. The man behind her said, ‘what IS the hold up?!’

I just observed. I couldn’t speak. I was paralyzed. When it was my turn to check out, I struggled to remember my phone number that gave me my QFC shopper advantage discount. I had to try three times. My mind had checked out. I was mentally following this man through his day. How hard were things for him? Did he have meaningful social connections? Did he have a community? Who was in his community? Does he need a warm winter coat? What can I do for him???? It struck me later, that the reason why I was so caught by this man is that I don’t know what O is going to be like when he is that age. Will he be fine? Will he be struggling to utilize his debit card at the neighborhood QFC? Will he have friends? Will he have a community? Who will be in his community? Will he have warm winter coat? Will I be here to protect him?! Who will protect him?

ugggggg……….why did my mind have to wander down this path? I wasn’t ready for this! I’m barely adapting to him being out in the world…well, Kindergarten anyways…and now I’m freaking out about him being 50, on welfare, unable to use the stupid debit card machine at the local super market!!!!!

Okay, now that I’ve expressed my biggest fear to the universe, I can move on. I know that this is going to come up again. But, in the world of worlds, I know, I have extreme faith that he is going to be looked after.

but…when will all of the laughing with him become laughing at him? What will I do then? Will he care? Will he notice? I don’t want him to notice. I want him to be free to be him. Be you, O, just be you and be proud! I pray that the world is gentle and kind to you.

oh happy day! October 16, 2010

Posted by caizooka in autism, autism parenting.
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The honeymoon of Kindergarten continues! O has taken on the role of ‘Kindergarten Teacher’. His teacher is the most loving, kind, sweet spoken, optimistic person. Thank goodness! I love how O has been able to emulate/channel her when he would normally start down a nasty path of  destruction. Taking everyone, and everything in his path with him. The other day, he started down that path of melting down. He wanted to put up the Halloween decorations. It was breakfast time and we were trying to get him to eat. Peter and I were saying, calmly, and hopeful that he might turn the corner of the meltdown, that he needs to have breakfast first. ‘Hey, buddy, how about some GF chocolate cereal”, “How about some GF fruity cereal”, “How about some hash browns”, “How about some hash browns with ketchup?” Didn’t look like we were getting anywhere. The ‘helpless body flail’ started. He was losing control. But, then, out of nowhere, he adopted his ‘Kindergarten Teacher tone’, and said, ‘Okay…number one, eat breakfast, number two, get dressed, number three, do Halloween decorations, deal?’. Wow. Ours jaws hit the floor. ‘Great, O, that sounds like a deal!’ was all that we could say. Darn…I would have agreed to anything at that point!

There has been a lot of that lately. O being able to get himself out of potential meltdowns, in a very thoughtful manner. I’m truly impressed. Something is working right.

Kindergarten is going so well for him. He has 6 children in his class and two full time teachers, and another full time aide. If not more. These people are all so passionate, caring, understanding, and delightful. He loves them. They love him. What more could you ask for?!

Last week, E actually turned a corner as well. After a few weeks of massive difficulties with him, on Monday, he suddenly let us see that glorious, sweet side of him. Hadn’t seen a glimpse of that part of him in awhile, so I was really relieved and happily rejoicing that it was still there! He was adorable this week. Super kind, affectionate, loving. My sister came into town and he said, ‘Emily, I missed you!’.  Pretty impressive for a 2 1/2 year old.

J has been doing well in school and I have been enjoying him a great deal, too.  Let me remember this week in the future when things may prove to be more difficult. I need to remember the joy that I am feeling when I am writing these words.

Creating and recreating my own ‘peeps’ October 12, 2010

Posted by caizooka in autism parenting.
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After getting the initial casting aside from our general ed/normal/mainstream Kindergarten/elementary school this fall, I’ve decided that instead of sitting around and looking at ‘what isn’t’, that I would focus on the ‘what is’.  Wearing these shoes of a mom of an autistic child, I’ve had opportunity to meet the absolutely most AMAZING people. Seriously amazing and inspiring! I cannot imagine if my life hadn’t taken this turn. After a decent amount of time just wallowing and being sad, I’m done. Ready to be active!  I got together with the most amazing bunch of moms the other night. Each one of them I completely connect with. We get each other. We speak the same language. The language of ‘what?!” and also the language of ‘YES!’ So funny how even though our kids might have similar diagnoses, they are as different as we are parents. Yet interestingly, we’re kinda all quite similar, too. At this point in my life I rejoice and say, ‘yes, please!’ What an extremely emotionally intelligent bunch of moms/friends. Conversation was easy and I didn’t have to explain so much. They just got it! And they got me. Pretty much effortless. We practically finish each others sentences.

It is amazing to me how suddenly this crazy thing called autism has entered our lives and brought us all to a single commonality. Lets learn. Lets be resourceful. Lets share. I love how it’s not a competition. We’re all looking out after each other. We’ve got each other’s back. There are no false pretenses, we are all just who we are. I think that it just reminds me how entirely consuming this world has become.