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The space between (Christmas and New Years) December 27, 2009

Posted by caizooka in autism parenting.
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Christmas was good in our house. My parents and my sister came over and the kids, and adults, all got to just relax. The joy of Christmas for me is not in the day of Christmas itself. I’m trying to separate the joy of Christmas, the meaning of Christmas, and the American gift giving, santa-clad holiday. All wonderful on many, many levels. But, to combine them into one day doesn’t do the others justice. They need to be separated into three days. I always cry at the end of Christmas Day. It seems like my life (and most peoples) for the past month+ has been defined by what I’m going to squeeze in to get what for whom. Life gets whirling out of control. To plan meals for the holidays, buying everything ahead of time, is just bonus pressure. Anticipating visiting places. What do we need to pack? Who is carrying what? Attending to everyone’s every need of the moment. Anticipating visitors. What do they need? Do we have bed sheets that actually fit that bed? Will it be okay? Do they have dietary restrictions? When the pace is nonstop like that you get used to it. After the holiday is over is when I fall apart. To be going at such a pace that stops so abruptly is jarring. On the other side of the tears it is refreshing, too. Glad to be able to find time to do something different again. I always come out of Christmas thinking about what I’m not going to do next year to make it easier. It never ends up that way. It just seems to be more complex, yet also so much more meaningful each year as well. Goal for next year: to maintain perspective.

J got the flu a few days before the holiday. It was yucky and so sad to see him so depleted for 2 full days. Then O started his screaming about his stomach soon after. That finally ended up to a trip to the ER yesterday. The paper that they brought home said, ‘diagnosis: abdominal pain’. Really?!!! NSS (if you know what that stands for then you get it. If not, email me;)) I worry about that little guy with this whole GI distress thing. GI abnormalities and inexplicable pain are quite common in autistic children. A friend of mine pointed out to me that his symptoms sound like IBS. I hadn’t thought of that before but it sounds similar. We are supposed to complete this series of tests of stool samples, to test for intestinal flora, but I haven’t been able to get myself to do it yet. It involves inducing pain, by giving him a laxative, to give different kinds of samples over a 24 hour period. I know that it would be better in the long run to have such information, but I think that we have to further evaluate at what risk. His initial reaction to anything right now is screaming. It is horrible on so many levels to hear him screaming.

Again, O has been spacing out a lot lately. Yes, he is getting better in so many amazing ways with his social skills therapies and numerous wonderful teachers that adore him and have so much to offer him. But, as a mom, watching your child here, but not here, is so upsetting. I feel his presence, but I don’t. I finally realized why he won’t respond to me in the car. He is always staring out the window, spacing out, in a far away land that I cannot access, no matter how hard I try. I realized that he is amused with the red lights. The brake lights of the cars ahead of us. I asked him one day, what he is looking at and for once he didn’t say, ‘see the aliens, mom!’, but he said, I’m looking at all of the red lights. They are beautiful!’ A-ha, yes, indeed, O, they are, thank you for sharing that! One more piece to the puzzle. I wonder how many pieces this puzzle is going to end up being. You don’t think about how big a puzzle you are signing up for when you have a child. 500 piece? 5000 piece? 5 million piece? Regardless, it is many, many pieces. I don’t think that we ever will see the full puzzle completed, with all of its pieces. The more that I ponder this, the more that I think that we see the full puzzle daily, but it compiles differently sometimes.

I don’t know if you are one of the lucky ones to have gotten to participate in an O related birthday event. He LOVES birthdays. He loves the candles, the song, the presents, the cake, and the sheer excitement of the event. It is euphoric to be at a birthday with O. He thinks that everyday is a birthday for someone. Some days he tells me that it is my birthday. That is always a joyous day! When everyone was asking him what he wanted for Christmas, as every adult asks every kid, he responded, ‘presents’. But the way in which he responded was so cute, his voice told you that he had no other expectations, and isn’t that what every kid wants. I don’t think that he’ll ever compare himself to any other kid. Gosh, I sure hope not. He is too original to be like everyone else!

A friend of mine gave me the Jenny McCarthy book, ‘Louder Than Words’ about her journey of her son’s autism. It is so interesting to read of others journeys along similar paths. I always learn so much about others journeys and lessons learned and am so thankful that there are others who are going thru this with me and are willing to share. I feel a deep sense of camaraderie with others on similar journeys. I do wish that it was better written or at least better edited…but the honesty with which it is written is beautiful. I am also reading a book called ‘With the Light’ which is a Japanese manga that was originally entitled ‘Hikaru to tomo ni’. It was made into a Japanese drama a few years ago. (not many people know my deep love of a good Japanese drama!). I’ve been reading the book and started to watch the drama as well. It is really, really interesting. I’m only a few episodes in (most Japanese renzoku dramas are 13 episodes long), but I so relate to the journey of this woman and her son. It’ll be interesting to see the different social nuances of a culture handling a child that doesn’t fit in, compared to raising a child in our society where you would think that they would fit in more. Hmm…a lot to ponder here.

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less screaming, please…PLEASE!!!!!!!!! December 21, 2009

Posted by caizooka in Uncategorized.
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Well, the last week has been a challenge. I don’t understand why everyone has to scream as much as they do.  Ugg…sometimes in order to carry my point across, I have to yell louder than they do just to make my presence known.  That is a bad cycle to be a part of. Makes me sad to think about it. But I think that if they overrun me without me having my voice heard it would make me far sadder. Will I establish a happy medium? I certainly hope so. It might not be tomorrow, but hopefully the day after.

Are there any experienced boy moms out there that could lend me advice on the rough housing? Lori said in a parenting lecture that it was natural and that boys have an innate need to rough house. She also said that they will never injure each other intentionally. There is always a point in which they stop. This rough housing thing helps them learn their limits. It helps them to understand things of which  I cannot understand because I have never been and will never be a boy. What I really need is a mom friend that used to be a boy….that would be awesome….anyone out there? I would love your insight!!! The other complication is that O does not understand how much he hurts people. Today he punched me 6 times in the stomach. I have a high tolerance for pain, but that hurt and it also upset me. I haven’t seen him like that in awhile, but the past couple of days his impulse control sensors are way off. He is so unaffected by it. One good thing is that he only does it to me, J, and sometimes Peter and E. His teacher told me today that he NEVER hits anyone.

E has been sick for a week. It seems that when my kids get sick they scream. I feel like screaming when I get sick.  In fact, I feel like screaming when my kids are sick, too. As every parent knows, it’s wretched to see your kids sick. You would do anything to make them feel better. But, then after a few days of it, you are just plain exhausted. It seems that the younger two guys don’t get cute-cuddle up sick like J does, but they get screamy and whiney. It is hard to take. You start to feel less bad for them and start to wonder what all of the screaming is about. At some point you forget that they are sick and just wonder why there is so much noise. I’m not sure exactly sure as to what is going on, but E, at 20 months now, is having massive temper tantrums. I put him in his crib after 20 minutes of his tantrum and was googling, ‘temper tantrum’ ‘how to break a toddler temper tantrum’ ‘uncontrollable tantrum’. No new information. Tried the change of venue, the distraction, the changing of subject. I’m pretty good at that stuff, but it doesn’t even deter little E. Sometimes it just adds fuel to the fire. After the tantrum breaks, he is just tired. Today he had a record long 2 1/2 hour nap. Hopefully this just has to do with the tail end of whatever bug he has. If not, I think that I will be signing him up for 5 full day/week care.

Just a few days left til Christmas. I think that everything is ready. I am looking forward to the whole Christmas experience. St Joseph’s for family mass, then to my sisters for Christmas Eve dinner, brunch at our house, then dinner at my parents. Our family virtue this and next week is generosity. I think that it’s a good virtue to ponder and explore. I am looking forward to our family conversation about it next week. I want my kids to be good gift givers. It is a skill. My dad, and mom, are the greatest gift givers. I don’t know who picked my name in our family secret santa this year but I secretly hope that it is my dad. He always puts such a huge amount of thought into buying gifts for people. The look of anticipation on his face when you open a gift from him is so unique. I want my kids to understand that feeling.  Both sides of it. What a gift to be able to give a gift in such regal, caring fashion, and also to be able to receive a gift that such thought went into. Peter and I weren’t going to exchange gifts this year, but I think that it’s important for the kids to see us exchanging gifts.  Nothing grandiose, just gifts that have thought and meaning behind them.

So thrilled on so many levels for my dear friend, H, who had a sweet little baby girl this morning. I’m so emotional today about this birth and so entirely happy for their family. What a true gift for them, and for her. What a wonderful match. You can tell by looking at the photos of them together just in those first few precious hours that they just complete each other. Does it get much better than that? No, that IS it! I really think that is just pure and utter bliss.  I love babies. I love everything that they mean. All of the wonder and hope. I am pretty certain that I won’t have anymore babies as I know that they are only babies for a short time, then soon enough they are wonderful, feisty toddlers. But, the joy of it all is so wonderful! I’m determined to find joy at every stage. As challenging as each stage is, it is all bliss. Remind me of that when I am failing to see that!

Hocus Pocus December 12, 2009

Posted by caizooka in Uncategorized.
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…there are a few moments in a day that if wish that if I closed by eyes I could be somewhere else, but then I open my eyes and I’m back here again.  Sometimes I’m happier than when I closed my eyes, and sometimes not as much. (this mostly has to do with the amount of noise generated by 3 LOUD boys!) The last couple of days O has been a challenge. A lot of screaming. He completely refuses to eat meals. If you mention the words, ‘breakfast’, ‘lunch’, or ‘dinner’, you are SOL and a round of screaming begins about how much he hates dinner.  He will pick up the plate and throw it at you or throw it at the floor, or sometimes he may just sit down and eat it.  I wish that I had more insight into his brain.  I just want to know what to expect! If I knew in advance that, ‘today might be a difficulty of 9/10, I could brace myself for it.  A most treasured friend of mine, who lost her daughter, told me that she can usually make it through the predictable dates like birthdays, anniversaries, holidays, but it is the things that occur that you don’t expect that really take you for a loop.  I’ve applied this thought process to many experiences in life. I got to experience one of those moments tonight. We all went to O’s Pre-K holiday song performance.  I was prepared for the fact that he would probably not participate and cry and whine the whole time. That didn’t upset me. I was sad for him, and bummed out for him that he couldn’t participate, but what caught me off guard were the other parents reactions to O’s behavior. I’ve been trying to process what exactly upset me and why I can’t get past it, but I am not sure that I really understand the feeling enough to verbally articulate it. Lets start with what I don’t feel…I don’t feel like a failure because my son couldn’t participate in the holiday performance, I don’t feel embarrassed by his behavior, I actually feel quite happy and tremendously proud that he is my son and just being himself.  Nothing bothered me. Of course, I always hold out hope that for some miraculous, inexplicable reason he might just jump up there and be right there with the rest of the kids, for his sake, not for mine. But the feeling that I was not expecting to feel was other people’s pity. I guess that is how I would phrase it. There was no condescending undertone at all.  This is a very nice bunch of parents to very lovely children, but I think that they felt bad for me out of kindness and I guess that I don’t know how to accept that feeling or if I even want to. I think that I equated that to pity. They felt awkward and didn’t know what to say or do. I try and picture myself in their shoes and I would be doing the exact same thing. One dear mom wouldn’t look me in the eye, tried to avoid me, probably because she was at a loss for words. That’s okay. I totally get it. I think that when you see something that is so far off from the norm, you embrace what you have and thank GOD that it is not you that has happened to. Whether it be a person on the street begging for money, or whatever, you always feel lucky that isn’t you. I guess that I’ve never felt that feeling before and it is an interesting place to be in.  At first it really upset me, but now I find it thought-provoking.

an autistic kinda day December 8, 2009

Posted by caizooka in Uncategorized.
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I don’t know how to better describe some of the behaviors of O from today other than ‘autistic’. He was far more at the other, less functioning end of the spectrum today.  In the morning he woke up in a good mood and after Baby E, Daddy, and J got off to school, I told him that we were going to go to Paint the Town (a pottery ceramic place) to make Daddy a birthday present. O is Mr. Birthday and he was so entirely excited to make his beloved Daddy something there.  I talked it up a storm and he was thrilled.  When we got there there was a kids group that was waiting to go in and their teachers were corralling them outside.  I don’t know if it was that, or what that just plain freaked him out.  Once we got in there he started to yell and scream about how much he didn’t want to be there and how much he ‘hated’ it and how ‘stupid’ it was.  I took him into the back and for some reason there was an adorable little ceramic doggie that had ‘O’ written on it’s collar.  I thought it was a sign to convince him that he would be comforted here, but for some reason, it just enraged him further.  The girl in the shop was really sweet but had clearly never dealt with an O. She could not fathom why anyone wouldn’t want to paint ceramics and have a perky smile on ALL DAY LONG.  Can you see my eyes rolling back in my head right now! So, O and I left, and went to Starbucks to get a treat.  The new Starbucks layout is really not very functional and is very, very loud.  O hated it.  Such a strong, powerful word.  Such a strong, powerful emotion. He covered his ears.  So, we left and went to a couple of shops that he did okay in.  He loved Fireworks with all of their original knickknack like things.  Fortunately we didn’t break anything!

For some reason that I could not quite decipher, O spaced out alot today and was hard to predict.  Yet, he was absolutely sweet and adorable, too. When he came home from school he was fine but was easily off set.  He screamed at the drop of a hat, or even less.  If Julian walked into the same room, he fussed and screamed.  If there is one thing that I could ask for for Christmas it would be for my children to get along and NOT scream.  It is painful to hear them. It tells me ‘I’m not satisfied in my life and it is YOUR fault, MOMMY’. I know that this statement is not true in my head, but that is nonetheless what I feel in my heart.

This evening wrapped up so well.  J and O were playing TOGETHER.  WOW.  That is new. They were video taping each other flying down the stairs together.  Destructive, yes, but adorable, yes.  Win, Win!!!  No injuries or trips to Childrens.  O’s huge love for dancing and Julian’s huge love for music was harmonious this evening.  O danced to some songs that J video recorded.  Too cute!

finally an update December 6, 2009

Posted by caizooka in Uncategorized.
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Been trying to find time to write.  I’ve been thinking about things to write about as I have been busying myself with crazy projects. Redoing dining room tables, chairs, spreading 10 yards of compost. Attending board meetings, guild meetings, and trying to churn out a Christmas card.  Oh, and somewhere in there, Thanksgiving occurred. I used to think that Thanksgiving was the stupidest holiday ever.  A holiday that people just sit around, eat, and get fat.  Now I think that it is just plain glorious.  A day to just hang out with the family, wear pj’s all day, whip together a couple of dishes, then go to my mom and dads where we’ve never had a failed bird or bad stuffing.  Good wine, good laughs, and appreciating what we have.  Leading up to Thanksgiving I gathered a lot of my thoughts and thought so intently of all of the amazing, gracious people that have crossed our paths in our lives.  Without each one of them, I would be a different, less fulfilled person.  I’m so lucky. So grateful for a healthy and happy family and lovely friends. So lucky to have a family that claims me and I claim them, proudly. Not everyone is so lucky.  I really want to see the movie, The Blindside.  Anyone who has seen it tells me of how wonderful a story it is. I need a heart-wrenching, bring it home, tear jerker movie for inspiration.  Speaking of movies, I found myself laughing hysterically watching The Hangover. What a great laugh.  If you haven’t seen it, it is outrageous and a great, belly-laugh kind of movie. A must see.

I have been a bit stuck in where I am at.  What I should blog about. Now I’m clear in my gratitude.  Although gratitude was our family virtue of the week several weeks ago, it has been stuck in my head and in my heart.  It is what makes me tick right now. It is the most important virtue that I want to convey to my children at this time of year. What underscored my ability to write was a lovely phone call from my old babysitter, Lillian.  She used to babysit my sister and I when we lived in LA.  She is an older Japanese-American woman.  I’ve searched and searched for my Lillian to help me raise my kids.  I’m still searching. So, why did she phone me from San Luis Obispo? She wanted to verify our address before sending us fresh fruit from her garden.  My favorite fruit, kaki (persimmons), satsuma (mikan), and usually some nashi (Japanese pear-apples) as well.  The gift of fruit is not something that I ever partake in my life now but in Japan fruit was such a common gift. So sweet, and so in season. I spoke with Lillian for 20 minutes and every second that I spoke with her was like I was 4,5,6 years old. She doesn’t have any children of her own, but she is a mom.  She scolds me for not knowing the 4 extra numbers in my zipcode.  Apparently providing this information allows your shipment to arrive that much sooner than if you didn’t write those four numbers on the envelope.  If anyone tries to scold me in my life now I would probably tell them off, but from Lillian, I just say, ‘oh, yes, you’re right, I should know what the numbers are’.  Somehow you feel loved by someone caring enough to scold you over the phone. Strange concept indeed.  Strange but comforting.

Since our nanny has moved out life has become more complex, more emotional. I miss her. It was nice having her in our presence, in our home. I can piece meal the babysitting situation, but it was nice to have her here and all of us felt her absence this weekend, our first weekend without her in our home.  We’ll be okay. We’ll move on, but she is very much in our hearts. I’m grateful for the place that she hold in our hearts. Even if she doesn’t live here, we’ll see her and she’ll be a part of us.

Preparing for Christmas is proving to be more of a challenge than I had thought.  I am taking away all expectations other than that of EVERYTHING Christmas I want to come from the heart. We were going to get a Christmas tree today and I just decided that it wasn’t right.  Part of the way there, my brain, my heart just said no. I remember going to cut down a tree with my family to be a happy, fun experience, not one where everyone, including the mom, is grumped out.  The timing wasn’t right.  I’d rather wait longer and enjoy the experience. Is that bad? No one seemed to care one way or the other. Except that my mom was half way there to Marysville to meet us. My bad. We did have a great evening at there house though.

O is doing well. Less hitting. E is hitting less, too. J is hitting more. As much as I try and understand the necessity of roughhousing for boys in their development, I do really wish that it just plain would go away.  Thumb wrestle and get it out of your system!

Interestingly, the Special Ed placement person at Seattle School District visited O in his Pre-K program at View Ridge.  She suggested that he attend Kindergarten at the EEU this next year, then repeat Kindergarten the following year at View Ridge. I hadn’t thought of that possibility, but it makes sense.  I thought that he would repeat Pre-K, then attend one year of Kindergarten. Their thought was that he might get bored of repeating the Pre-K curriculum, but the Kindergarten curriculum is far more complex and he’d be better suited to repeat the latter. I agree with their assessment and hope that he gets into the EEU next fall. That would be fantastic.  We have fallen into the greatest ABA therapists.  Heather and Chelsea.  O sees them twice/week for social skills group and is really, really growing.

O uses his dogs as props. It’s really, super cute. ‘Snowflake’, his stuffed husky dog was at my parents house and he saw him and his eyes lit up.  He hugged him and told him that he was wondering where he was. He is so cute. His big love is ‘Puff’, a little stuffed dog that he tells everything to. He scold him, rewards him, puts him in time out, hugs him when he is sleeping.  It is adorable.