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one week down February 26, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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Well, after this evening, the gfcf diet doesn’t seem like such a big deal. We have the most delightful babysitter. She texted me that E had thrown up. After my autism support group meeting I headed home to help deal with the barf situation. E was fine and running around being absolutely darling. O was a disaster. Darnit. I guess that he was wondrous all evening until E threw up. I am beginning to see a trend when the shift in attention diverts from O, he (sometimes) loses it. Gosh, who knows! O basically lost it tonite because of no real apparent reasoning. Well, real and apparent in my world has a wholly different meaning in his. Screaming, crying. Then, intentional throwing of apple juice. Twice. Apparently we didn’t have the right color straws to suit his mood. What the heck. I so should have predicted this! He NEEDED purple AND black. I should have known! I clearly wasn’t thinking thru this well enough. After this, he zoned out for a long time. Then he came around sheepishly and was sorry. He said that he is so sorry for throwing the apple  juice on the floor two times. He then suggested that we should get some more straws the next time we go to the store. Wow. That’s progress. If we could just work on the meltdowns now.

The diet has been going well for us. To be selfish, I have to say that I feel great! No gluten, dairy for over a week. Don’t crave it either. It’s getting a little easier. The bread substitutes leave a lot to be desired. I found tapioca flour hot dog buns. Made them for J and he (Mr. Silver Palette himself) didn’t even know the difference. O liked them, too. There are some brands that are good, and some that are disgusting. After making homemade gfcf pizza last night, I’d like to venture into the bread baking. It was actually pretty good. I’m going to borrow a bread machine and see how it goes.

One issue that has gotten worse has been the biting, oral sensory issue. We’re on the waiting list at Rosemary White for Sensory Integration Therapy. O constantly has something in his mouth. Must be chewing at all times. Last night he was chewing so hard he actually bit his inner lip and he didn’t notice it. He has started to bite his fingernails and will chew on the skin on his hands until they are raw if he doesn’t have anything to chew on. He chews on his shirt, sleeves of his coat, his blanket, his stuffed dog, ‘Puff’. He did this when he was younger, but hasn’t been doing this for awhile. These sensory issues seem to come in waves. It is worrisome. Something must be off kilter with him sensory-wise. I could tell that he wanted to hug me this morning when he woke up, but instead he punched me. Then he shoved E over. It didn’t even phase him that he did something wrong. Just kept on walking down the stairs. He scares me when he gets like this. It seems that there is not much that we can do at that moment to help him or help the situation other than removing ourselves from the situation. E was crying saying that O hit him. I gave him attention and he felt better. I was really happy that he didn’t smack him back.

I’ve been thinking about how E’s life is going to be different because of O. I know that in the long run, he will be significantly enriched by having O as his older brother, but I am anticipating some hurdles. I see him overcompensate for O already and he’s not even two. One of my weaknesses is my anxiety involving time. Must be on time. I freak out if I’m late. O is always forcing me to be late and it makes me crazy/crazier. He either can’t focus at all or is entirely over-focused. There is very little middle ground. Trying to get socks, shoes, and a coat on him and get him into the car is a major feat. E goes and gets his own socks and shoes and coat, then he gets O his shoes and coat, too. I can see how he wants to help O and it is really sweet. They’ll be two years apart in school and I wonder how that will play out for each of them. I don’t worry as much about J because he’s so much older than O and E and he’s establishing himself well in his own groove. We’ll deal the issues as they present themselves or blow up in our faces. Either way 😉

I’d like to present my mom with the award for ‘The First One to Find Gluten-free Casein-Free Donuts’ Award. Woo Hoo! As a prize you get to have a GFCF donut with us tomorrow! Can’t wait.

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give my son a donut February 24, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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My God. Are there no GFCF donuts in all of Seattle? On Amazon.com Grocery? No………….. Boy, this mommy searched and searched yesterday but found nothing. My son wanted a donut. My dear, sweet, spacing out, completely adorable autistic son, Oliver who is 4 1/2, wanted a donut. I could not produce it for him. We went to several gluten free bakeries, PCC, Whole Foods, searched the internet, called local donut bakeries. I found some truly gross looking recipes. When Oliver gets a bee in his bonnet, watch out world, there is no letting up. He talked about it again and again and again. Woke up this morning asking for donuts. I made GFCF pancakes in the shape of donuts. I stacked them with pure maple syrup and dairy free chocolate chips. He did seem delighted with them. No doubt though, when I pick him up today from school he’ll be asking for the donuts again.

I am not a baker, but it looks like I may have to become one. If it means that it’ll bring a smile to my sweet Oliver’s face, then I might have to dive in.

Where the sidewalk ends February 23, 2010

Posted by caizooka in autism parenting.
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Today was one of those days that you just wonder ‘why?’ Feeling under the weather doesn’t help. The GFCF diet is going okay. Until today. O started to scream because his tummy hurts. All morning. After a 30 minute stint in the potty, he seemed to feel better. I knew that this diet was going to upset things a bit before they get better. I forgot how much it hurts to hear him in pain.

A friend and I went on a walk yesterday. I had both kids in the double stroller. O has to tell us which way to go. Left or right. Believe me, I’ve tried to convince him otherwise. I’m not a mom who caves easily. I have learned with Mr. O when it is okay to cave, and when to give him control of part of the situation. He wanted to go down the hill, then back up again. He led us down Sand Point Way. Literally, the sidewalk ended! I couldn’t believe it. My dear friend, Mary and I looked at each other and in unison said, ‘where the sidewalk ends’. Wow. How ominous and insightful. Strangely, pondering the actual poem ‘where the sidewalk ends’, it tell how the grass is greener on the other side. Interestingly, at that very moment it was a fateful statement, yet at this time, when I pen this moment, I needed that utterance to gain insight to the rest of the day. As I remember, the poem states that we should free ourselves of the current environment to go to the beautiful place…where the sidewalk ends. I guess that is where I was stuck. What IS that place? Could it be quieter? Yes. Could it be calmer? Yes. Could it be better? No. I know that I have everything that I need for this to be the place to be where the sidewalk meets the end. It can be both. It seems to be both. We embrace both worlds here. Graciously and lovingly.

thank you February 22, 2010

Posted by caizooka in Uncategorized.
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I can think of no other words to better describe the feeling in my heart as I think about one of the dearest souls who has passed through my life, and into God’s hands yesterday. My grandfather’s cousin, Keiji Tsutsumi, was the most lovely of the loveliest souls. He was one of the people who passed through my life when I needed it. God appointed. I probably didn’t mean very much to him, but his influence upon me was life changing.

For those who know this about me, a slight few, you’ll know how difficult this is to express. I am a grandpa’s girl. My grandfather, Fred Masao Kaizuka, was such a force in my life. Not a day has passed where I don’t think about him. Yet, I can barely utter his name without crying. He passed away when I was living with him in LA when I was 19. It was incredibly tragic. Just prior to his passing away, his cousin, Keiji, and his wife, Chigusa came to town to visit on their way to their son’s wedding in South Carolina. I met them and was embarrassed as all get out to say anything Japanese. I said, ‘hajimemashite (nice to meet you)’ and that was all I could scrape together from two years of high school Japanese. We met them at some lovely Beverly Hills hotel. I had known their son, Shigeru, since I was 8. He was like my older brother. He spent every holiday with us since that time. I lived with Keiji and Chigusa when I was 19 for 6 months in the fishing village, Kada, that my grandfather was from, immediately following his death. I was seeking him. I found a lot of him in Keiji Tsutsumi.

Papa Tsutsumi, as we just called him, ‘Papa’, was a truly amazing individual. He had to do compulsory factory work in Kobe during the war, then went to Keio Univeristy, where he played rugby, quite competitively. He served as mayor of Kada, Wakayama for many years. He was a community leader. He was a leader. He was dignified and true. Every decision that he made was true to him. If there was a stone path to be made, he would make it himself, researching everything related to path building in the process. He was most gracious to everyone around him. He ran or biked every morning before dawn and he studied, alot. He possessed a soul that was entirely unique. I am so blessed to have been influenced by him. I think of him alot when I think about how busy we are in our lives. I think about how he would harp on the fact that if you got a dishwasher that it would make your life THAT much busier. All of the modern conveniences that we think of being convenient, he would mock. He wouldn’t eat okra. It was a ‘post war’ vegetable. He was true to consuming only pre-war vegetables. Most of which were grown by his cousin, Mrs. Hayashi, who is 94 years old and far sharper than anyone than I know. A lot of time when I insist upon making everything from scratch, it is because of this man. A memory of his soul resides in me. When I am cooking, I refuse to take short cuts. I want to learn the lessons behind creating things from scratch. I feel like by creating time to do these somewhat laborious tasks that there is time in there to contemplate. Very little in modern life allows for simple time to contemplate. Traditional life does. It allows you to contemplate your next move and your previous one as well. To see it in a different perspective. We lack that entirely. There is no contemplation that occurs now. It’s all about moving on and forward and being entirely overwhelmed to the point that we all need hand held devices that sync our calendars so that we can literally be in two or three places at once. Is that what this has all boiled down to? I will miss this dear man but feel greatly blessed to have been touched by his soul. Thank you. ありがとうございました。

flying (GFCF) fruit loops February 19, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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The title says it all. My kids, when not gastronomically appeased, like to throw their food, forks, spoons, and plates at me. Why? This is a good question. O does it because he is O. E does it because O does it and it gets a rise out of me. Thank GOD that J and Peter don’t do it. That would be a problem! Seriously, after putting some energy and thought into this whole GFCF diet, preparing meals has been a challenge.  A rewarding one when they are being consumed, gratefully or not. But, when they are being hurled at me, I take offense.

I have pride in the fact that Julian is such a good eater. He eats a variety of well cultured, very diversified cuisines. He’s picky, but not in a bad way. He has good tastes in food and when he asks me to make him something above and beyond to appease his palette, I will gladly comply. Kinda makes me happy that he’s been paying attention all of these years to the extra effort to provide him a variety of foods and flavors. When I make a pretty well thought out, balanced meal for O that is wholly GFCF AND delicious looking and tasting, and he chucks it at me across the kitchen without even trying it first, followed by his fork, I’m not only sad, but, I’m worried. He demands a hot dog. Seriously?! I’ve made this lovely meal for you and you throw it at me, tell me that you hate me, hurl your fork at me and then demand the most disgusting food on the planet?!! This mom couldn’t say yes to that. Should I have? I have an issue about being a short order cook to my offspring. That is the lowest of the low in my world. Do I do it still? Yes, I do. Am I proud? No, it’s sad. Until our lovely O came into our family, I knew not of how some people are just born like this. I swear that I thought that given a lump of clay, I could form that very lump into whom I wanted. Woah, was I ever wrong. Never been more wrong. I’ve found and am finding each and every day that that was the stupidest assumption that I have ever made. But, tonight, I didn’t give into the hotdog craving of my dearest O. I’ve gotta be consistent. No short order cook here. Sorry, dudes.

O is who he is. J is who he is. E is who he is. I accept that I have some control in guiding them, hopefully showing them some manners. Hopefully they won’t throw plates of food at people that they love the rest of their lives. It’s my hope and prayer that they don’t.

day one of GFCF February 17, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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Well, only two hours left of the first day of GFCF (gluten-free/casein(milk)-free) for us. I’d say that we did pretty well for our first day. We’ll definitely find our way in this. It’ll take some getting used to and we’ll endure some snags. This morning, I feel like I was ready for a gfcf breakfast smorgasbord. For those who aren’t related to me, you won’t know my obsession with smorgasbords. It’s not an obsession, rather a repulsion. All of that food laying out there. Half of it will go to waste because the Health Dept won’t let it sit out again so it’ll be thrown away. Wasteful. Mottainai. One of my favorite Japanese words that translates to English accd’g to Wikipedia as this: ‘a sense of regret concerning waste when the intrinsic value of an object or resource is not properly utilized’. Love that word. No better way to describe serious utter wastefulness.

So…I set out to meet every dietary need of every family member this morning, the GFCF way. I had GFCF pancakes, waffles, pancake and waffle mixes, bread with soy butter (you can start gagging now), a handful of cereals and granolas, soy yogurts (more gagging), juices, rice milk, almond milk. J has a cold and food is the last thing on his mind so he forgoes the yummy display of food. O ate the pancakes (Trader Joe’s GFCF version), with pure, organic maple syrup. E had the same. What I didn’t anticipate, but apparently should have, is the fact that the chocolate chips that Oliver sometimes gets on his pancakes (thanks, Grandma!!!) have milk in them hence the whole ‘milk chocolate chips’. So, after a bit of whining, I caved and decided that it wasn’t going to be the biggest thing if on the first day that’s the only flub up that we have.

Packed up the little guys lunches and made an executive decision to allow the other family members to eat whatever the want outside the house, but GFCF during the waking hours of O. Seems fair. So, I reached into the back of the deli box in the fridge and grabbed a string cheese for E’s lunch. Don’t tell O!

I communicated with one of his pre-k’s that this is our current route. They were more than receptive to this and very welcome to helping us with the change. I fully expect to provide all of his snacks, but they provided me with the Dept of Health licensing standard that requires that two food groups need be presented in a proper snack. Hence, a grain and a dairy. A protein and a fruit..etc, etc. And they also gave me their month long snack schedule so I can plan around that. Very helpful! I have to fill out some paper work so that they have it on hand for their licensing. I will also need to add this to his IEP for the Seattle School District. All very doable. Very, very fortunate to have such compassionate people on board with us. Apparently, there was only one slip up at lunch where O was offered rice milk and didn’t like it. (I’m sure that was the polite way of describing what he really said which usually involve the words ‘hate’, ‘gross’, ‘disgusting’) I guess that he poured himself a half a glass of real milk.  No big deal. Again, it was our first day.

In the past two days, I have combed Trader Joe’s, Costco, Safeway, and Whole Foods for their gluten free/casein free foods. I think that we could feed a small GFCF army.

I would like to ask the kind soul who invented rice cakes, ‘WHAT THE HELL WERE YOU THINKING?!!!’ That stuff is so disgusting. Makes me feel like I’m on weight watchers. God forbid. I’m NOT eating that and neither are my kids! I’d rather eat air.

O had a great attitude today. He did fantastic at school. Did super well at home. One of the teachers in one of the other classrooms offered him a graham cracker. I think that she must of felt like I was attacking her as I was yelling, ‘NO, NO WHEAT!!!’. I’m crazy. I guess that I’m committed to being crazy for at least the next 6 1/2 weeks.

Yep. Started off Lent praying for all of this to happen for us this morning at mass. I know that this is a good thing. As long as we don’t have to eat rice cakes!

pure goodness February 15, 2010

Posted by caizooka in autism parenting.
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A few days of quiet and a little peace around here. Maybe the boys colluded and said, ‘hey, it’s Valentine’s Day and all, so lets give mom a break’. Whatever the reasoning, I’m on board. A few outbreaks of hitting, biting each other, but nothing that doesn’t occur in every home with 3 boys.

I love O’s sense of wonder and his extreme imagination. Yes, he can get stuck there sometimes, but I’m noticing that if I let him be stuck there and explore and come back on his own that he is better able to renter our world than if he is forced. He needs to explore that part of himself. He acts out life a lot through his little stuffed dog who he named, ‘Puff’. Puff gets scolded (by O), sent to time out, cuddled, potty trained, and most recently, he hatches eggs! A multi talented dog. Also, Puff used to be a boy, but now is a girl. Hmmm…how did that happen? I’m sure that in O World there is a very simple explanation for this. I kinda don’t want to know 😉

One of my least favorite parts of being a parent is that time of year called ‘SCIENCE FAIR PROJECT HELL’. Why, why, why do I have to do this every year? And, quite honestly, if I know that I’m going to be doing this all by myself, why don’t I get to choose?! I might chose something interesting like ‘how microwaves are poison’ or ‘the evil of plastic’. But nooooooooooo….this year we are dying white flowers green. Mr. Social Pants went on a trip with his friends so guess who is doing the data recording?  Yep…me! I have to admit that it’s much better than the ‘exploding maggots in the microwave’ or ‘growing maggots’ project of 5th grade. Incidentally, the exploding of the maggots never actually happened. No one wanted to forfeit their microwaves.

I’m reading about the different so called ‘cures’ for autism. I’m dragging my feet when I should be jumping in feet first. I should go to a DAN (Defeat Autism Now) conference. I so admire parents who have been able to plow ahead and move forward in this realm. I want to be on board, but I’m looking (maybe selfishly) at how much energy and time I have to expend. I want someone to come to me magically and present an entire program for O. I want them to tell me where we are at, what we need to do, and what the outcome will be. A kind mentor in this process told me that I need to treat this like I’m curing cancer and to act decisively and now in order to get the best possible outcome. She’s right! Maybe I should stop thinking about the ‘what ifs’ and just go for it. No gluten, no dairy…just try! Ooooohhhh…just thought of something. The perfect time of year for this kind of focused commitment…LENT. Could I motivate to start this in 2 days? Yes. Why not. Okay, you just heard it first, for Lent this year, we’re going no gluten, no dairy. Hook, line and sinker.

new parenting tool February 5, 2010

Posted by caizooka in autism parenting.
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J and I were in the Apple store the other day and I tried on these really cool headphones. I could seriously not hear anything other than the music coming out of the iPod. J was 1 ft away from me, talking to me and I could see his lips moving and couldn’t even hear a sound. Wow. I decided that since my parenting toolbox is currently depleted, that perhaps this could help. AND…they look really, really cool, too. I can so see myself wearing these around my house, smiling, dancing when me kids have gone haywire. Sound affects us so differently than any other sense. When I am scared in a movie but I want to still see it, I turn it on mute and, it’s not as scary.

Here is the link to the cool, Dr. Dre BEATS headphones.  Every mom should have a pair.

headphones

wondering how much my right arm would fetch on eBay February 4, 2010

Posted by caizooka in autism parenting.
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In putting tax info together, I came across some startlingly realistic numbers. I’m trying to figure out what autism is going to cost financially. What therapies have the highest rate of success? Which therapies are bogus? Which ones are right for O? So many questions and so few answers. He definitely needs ABA therapy. A lot of it. He currently goes 2x/week. I’m finding in research that it recommended that 40 hours/week is necessary to achieve any real results.  Hmm…40 hrs/week at $85/hour. That is $13,600/month. $163,200/year. I could probably find a teachers assistant that wouldn’t have such an hourly rate. Next, we’re finding that a lot of O’s tantrums are most likely caused by his sensory processing disorders. He will need that therapy at least 1/week. That is approximately $140/hour. $560/month. $6720/year. Then there is the gluten free/casein free diet which is not inexpensive. There are the supplements, the regular doctor visits. For other families out there that are encountering this, I wonder how they are coping. How you prioritize what is necessary vs. what is not. I guess that it entirely depends upon each child’s individual needs.

I’m not complaining here. I know that we’re going to find the very best solution possible for O and for our family. I am beginning to think that there are many different kinds and causes of autism. And therefore different coping strategies, different therapies, different cures. Some are better detected earlier, some not. Some manifest themselves in very complex, different ways. Is there a cure? I don’t know. I want to believe that I’m trying my hardest to do everything possible to give O the best space for him to grow in. Seeing him when he is having a tantrum is so painful. I can only imagine the pain that he is in when he is feeling all of the sensory overloads. I am truly afraid to say that I believe that there is a cure because I don’t want to put pressure on him, on me, on our family, for him to be cured of autism. I will love every ounce of him either way.

On a different parenting note…the parent of a 13 year old boy…it seems like girls are entering the picture. These sweet 7th grade girls who were at the 7th grade boys basketball game last night. So entirely adorable in their school color outfits from head to toe. Their cheers for the team. Their contagious enthusiasm. After the big win, they went over to congratulate the boys by hugging them.  Ooooohhhh. Never seen anything as awkward in my life as these boys when these spunky, precious girls came up and hugged them! I was half chuckling at their reactions to the girls, half embarrassed for the boys because it is so far out of their realm, and honestly, thinking a little bit of, ‘hey…hands off my son!’ Never felt that before. That’s just the beginning, isn’t it?!