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many glimmers of sparkly hope May 4, 2010

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After yesterday’s bleak post, (sorry…) I will share some positive highlights of today…

-Oliver came home from his beloved Teacher Heather’s last night and took the air popper out, measured and poured popcorn in, placed the bowl, and turned the popcorn maker on entirely on his own. He didn’t eat any, but hey, small victories!

-Emil asks Oliver when he was freaking out, “Ollie, what’s wrong? Why are you sad?”.  Keep in mind he just turned two!

-Julian has decided to engage in school and has produced a lovely video about cyber bullying with his buddies. What a great bunch of boys that he surrounds himself with. Love those kids sooooooo much!

Oliver has had his share of tantrums and very challenging moments today. VERY challenging. He told my mom that if she made him get on the bus that he was going to have a tantrum.  WHAT?! Now he is threatening people. What next! Mom managed to turn his behavior around but it is devastating that this behavior has extended beyond just threatening his mom and dad.  Grief!

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$22 to avoid a huge tantrum. Today, I’ll take it. April 28, 2010

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Well, we are now the proud owners of a $22 pink watering can. That is what it took for Oliver and I to be able to leave the nursery yesterday intact. Tuesdays mornings are our sacred Oliver-Mommy time. We always do something fun before he boards the bus at 12:30. Yesterday we went to the nursery because he wanted to buy some strawberries. We’ve been gardening gung-ho lately. Okay, not we, but me. And I wanted to rope him in so that we can spend more time outside. So, after I made him go with me all over the nursery, we settled on a few strawberry plants. We were having such a good time talking, laughing, and just plain joking around about nothing. On the way to the check out counter, the large rack of shiny, colored watering cans caught his eye. He just bolted for them. Not just the rack, but the pink one to be specific. He asked very nicely, ‘Mama, can we buy this pink watering can. Pleaaaaassssseeeee?’ I don’t want my kids to think that they can get anything and everything that they ask for. That is a bad precedent to set. I decided to steer him away to the other (less expensive) watering cans. He started to flip out. It’s really like something in his head just turned on and then Wham! Tantrum. I tried and tried to get him out of it. Judging parenting eyes were lurking. I totally held it together but then I just decided that it wasn’t worth it. I knew that if I gave in that both he and I would remember this as good memory. The take away from the morning wouldn’t be an image of myself leaving an abandoned shopping cart full of carefully selected strawberry plants in order to pick up my screaming, flailing child. I decided that the $22 to fork over for shiny pink metal watering can was worth it. And, it worked. We had a really good hour and a half after that until he got on the bus. If I didn’t give into him, that would have been an hour and a half of further escalating screaming. I would have spent the 3 hours when he was at school racking my brain how the situation could have been different and also how much I suck as a parent. We’ll consider the pink watering can an investment. Boy, does he love it!

‘gluten-four’ makes my tummy hurt April 20, 2010

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Oh, Oliver and his sayings. I love him. Today he had a very heartfelt conversation with my sister, Malia, on the phone about going to Trader Joe’s. He said that he bought ‘gluten-free’ because gluten-free made his tummy feel better and had the purple signs (the signs that they use at Trader Joe’s to signify that an item is gluten-free is a purple sign). Then he said that orange juice also protects his tummy and makes him feel better. He then told her that ‘gluten-four’ made his tummy feel bad. I gather that he has interpreted ‘gluten-free’ to be ‘gluten-three’. What a nut. I haven’t had too many conversations with him about this so a lot of this has really been about him picking up on the conversations that I have about gluten-free diets with my mom, sisters, and friends. He is incredibly literal. He makes me chuckle 😉

shoestring potatoes are gluten-free! April 20, 2010

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Yes! Hallelujah! Shoestring potatoes are gluten-free! What a joy. Trying to remain optimistic, because I am a true optimist, but honestly, life can be sad and depressing whilst also being happy and lovely. Finding a balance in this world raising these 3 boys is a challenge right now. I do know that in sad there is happy, and in happy there is sad. Ugg…I need a balance. I feel that it fluctuates between super happy and super sad in a moments notice, if even that. I don’t want to complain. I hate complainers. I want to tell them to buck up and live life. I want to tell myself that. I tell myself that. I hear myself saying that. I am doing that. And with that I feel hope and love and pure joy. The utter pain of autism in our lives and the utter joy of it is a lot to bear sometimes. I don’t want to say ‘I’m overwhelmed’, but I am. If it were just autism, maybe I would be fine. If it were just a teenager, maybe I would be fine. If it were just a feisty toddler, maybe I would be fine. But the combination of trying to anticipate the needs of all three of these beings in addition to a marriage and a home is a lot. Thank God for Glee. The happiness in my week has been the return of this show. How crazy is that! It is something that I can count on. The rest is not as reliable.

acceptance and making peace with Autism April 20, 2010

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I’ve done a great deal of reflecting lately. Having my hand bandaged and being in an extended lethargic state of recovery, I’ve had the time to do so. There is so much to reflect upon. It seems that these times when you are forced to slow down are a blessing in disguise. I feel frustrated because there is so much to get done and I can’t so I just throw my hand(s) in the air. I’ve reflecting upon so much. I have done a lot of contemplating where I am in the raising of each child and how vastly different each of them are. Different kids, different needs. Now that my wrist has been set free of my cast from the surgery, I can type again. YAY!

I think about where I was a year ago. We had no diagnosis; just hunches and lots and lots of fear. Oliver had just been evaluated by the school district. I was a mess. Sadness wrapped in a thick layer of depression from feeling out of control and frightened. Oliver was tested at between 1 – 2% in social skills. That was devastating. I remember sitting in the parking lot of Burger Master on Aurora.  Sobbing hysterically. Not knowing what to do. Oliver sat in the backseat drinking a milkshake, spacing out, staring out the window. That was such a low point. It was so scary. I have never been in denial of where we are at with Oliver. I think that if Oliver were my only son or my oldest child, it would be a different situation. Also the fact that my mom was so good at grasping the bull by the horns always set a great precedence for us. Even though it had been a few years between kids, so there was no one to directly compare him to, I knew that Oliver was different. He wasn’t connecting the dots and jumping to the next milestone on his own. I figured that maybe different kids just progressed differently. I still cannot watch videos of him when he was younger because I don’t know what I don’t want to see. If there is obviously something there and I didn’t see it I will feel bad. If there doesn’t appear to be anything, I will feel bad that maybe we did something to cause this. I’ll get to the point where I’m ready to watch these, but I am just not ready yet.

Sometimes I want to wake up and find that this whole autism thing has washed away. Even though sometimes it’s not the most difficult thing that our family is dealing with, it is undeniably the thing that pushes us over the edge because of the amount of all encompassing worry involved. I’m learning to live with it and recognize the beauty of everything that we are granted. Even though it seems like too much at times, I have made peace with where I am. I recognize how volatile this world is and how something that I have never even heard of can invade my life tomorrow. So, I need to be okay with today. Not only do I need to be okay with it, but I have to embrace it. I think that part of embracing something is accepting its flaws and weaknesses along with it’s beauty and strength. I accept that there are going to be worse days than I’ve seen, but I also believe whole-heartedly that the best, most glorious days are yet to come.

Another large part of acceptance is giving up control. I see parents who feel as powerless in the face of autism as I do. We are courageous. I also see parents who are absolutely courageous upfront, seemingly fearless. I bow down to you and praise you for paving part of this path before us. It is downright scary at times the effects of autism has upon on a family. I don’t feel as much fear when I admit that I don’t have control of this. I can try and control Oliver’s diet, vitamins and supplements, therapies, etc, but I have to make a separation about what I am trying to control. I cannot control autism and I cannot control Oliver. My friend, A, today told me that she was reading a book about ADHD and the whole first chapter spoke of how first and foremost you must love your child for who they are.  Indeed, that is it! That is the first step in acceptance for me. Sure, I would love for autism to leave us, to free Oliver of its very intense grasp, but if not I will love him just the same. Setting aside the expectations that you have for that sweet little baby that you held so tightly when they were born and promised them that nothing would ever, ever go wrong…that takes a great deal of faith to know that it is just going to be okay.

I also reflect upon the people who have entered my life in the past year and I simply can’t believe my blessings. I have learned a great deal from the courage of people who are facing autism and life’s many other challenges. The tears we’ve shed, the laughter…my life is so full because of all of these amazing souls that have passed through my life and left a huge impression upon me. I cannot imagine my existence without them and the lessons I have learned from them. I feel a tremendous sense of community and support. I’m so grateful.

Although sometimes I don’t want to be more aware of Autism, I remain in awe of Awe-tism. How awesomely consuming it is. How much time, energy, money, and strength that it demands of me. It doesn’t ask me patiently and wait for me to say, ‘just a sec’. It shrieks at the top of it’s lungs for me to hear it and drowns absolutely everything and everyone else out. I’m still listening but sometimes I just really want to turn the volume down.

Back to the drawing board April 10, 2010

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On Easter Sunday we started to let Oliver eat gluten again. And some dairy. Not huge quantities of either. It’s been a disaster. We are shocked. He is spending a lot of time spacing out, freaks out over seemingly nothing, has reverted to grunting and pointing rather than using words, is unglued…I could go on. Basically, it seems like we have taken 10 steps backwards. We went to Leavenworth for the week and he had a really difficult time adjusting. He hid under the covers, in small corners when we first got there. Refusing to join in. Wanted to go home to the brown house (that’s what he calls our house). He then realized that I was willing to give in more than usual and he started demanding lollipops. Lots, and lots of lollipops. And he became compulsively obsessive about it, too.  ‘I want a lollipop!’ ‘Lollipop!’ ‘Mommy, lollipop!’ This did not end until I gave him a lollipop. It was almost humorous. Thank goodness my mom, dad, and sister were there to help with their great senses of humor. It made a bad situation not so bad. Such a gift to be able to laugh!

Okay, so what do we do now? The diet was hard, but not being on it was way more difficult. I said just last week that if it were worth it, I’d go back on it in a heartbeat. Well, my heart has beat, skipped beats, and beat again. I wanted to see if it was something else that was causing that behavior, but my instinct is pretty clearly telling me that it’s time to go back. I’m just wondering in which capacity though. We are thinking to trying going no-gluten, but having moderate amounts of casein (dairy). Honestly, all of those soy products as cheese/dairy replacements was really bothering me. I think that we’ll give this a go and see what the outcome is.

and, we have a haircut!! April 9, 2010

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Just short of a miracle, Oliver got a haircut with no big fuss. Thanks to his buddy who is his social skills partner, and to Teacher Heather. His buddy got a haircut last weekend and on Monday they drew up a social skills story. Peter talked with him about what was scary and came to find out that it was the hair falling in his face that was most terrifying. I did some research and found that some people have used visors to prevent the hair from falling in their faces. I told him that there was a special hat for haircuts. He seem unenthused at first, but then he seemed into it. For some reason, the next day I asked him if he wanted to get a haircut at the barbershop or from Mommy.  I have been through this conversation with him numerous times before only to be yelled at, ‘NO, I HATE HAIRCUTS!’ But for some reason on this day he said, I’d rather have you do it, Mommy. He asked if we had a special hat. I said, ‘Why, yes, and you get to choose which one you want to use!’ I didn’t think this through. I was still on a high from hearing the words, ‘YES’. I somehow floated to the hat drawer in Julian’s room and there were two visors in there. One was an orange Denver Broncos one. That is the one Ollie chose. He also insisted upon scissors, NO clippers. I cut his very thick, overgrown hair with a pair of $1.99 haircutting scissors with a huge smile on my face. It’s not the prettiest haircut you’ve ever seen, but it is definitely a haircut. Huge, huge progress. I really never thought that it would really happen. Yeah for progress!

I’ll just have an apple and peanut butter March 31, 2010

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Since diving into the gluten free casein free diet for O 6 weeks ago, I don’t know what to think. Behaviorally speaking, I see no change. This is where I had really expected to see significant change. Where I do notice change is in his focus and also language acquisition. Quite significant actually. I am really going to have to consider how much of a difference it has made because the food situation with O has gotten out of hand. I honestly don’t think that it is because the restricted aspect of this diet. We have done a very careful job of allowing him to eat the foods that he wants. Peter’s new trick is to take a gluten free hamburger bun to Dick’s and swap them out in the front seat before O catches wind of it. I took his lead and have been carrying gluten free hot dog buns in my bag when we go to the Museum of Flight or to the Children’s Museum.

We’re figuring out that trying to get O to eat a proper meal is kinda out of the question at this point. So…I’m trying to pack calories and nutrients into him during snacks. And earlier in the day he will eat more. Come dinner, forget it. It’s enough of a struggle just getting him to sit in his chair, furthermore putting food into his mouth, chew, swallow and digest. There are days when I think that the only thing that he will eat is apples and peanut butter. Not any apple and not any peanut butter of course. The apple must be fresh from the fridge, cut into wedges, peeled. The peanut butter must be the extra country JIF that has the blue cap from Costco. Just writing this makes me cringe. I have learned that one should not ever try and substitute a different, perhaps better quality, organic peanut butter, nor should one even consider leaving the peels on the apples. On the upside, the calorie content is good and there is iron and protein in the peanut butter. The apple is 80 calories. The peanut butter is about 190 calories/2T. Over the course of a day he’ll probably eat 3 apples (240 calories) and more than a half a cup of peanut butter (760 calories). That’s 1000 calories. In a web search, I found that a child of his age and activity level should consume approximately 1400 calories. So, that’s not bad. I’ve been telling myself over the past couple weeks that Temple Grandin would ONLY eat pudding and jello for the longest time and she’s now over 60 and a functioning member of society.

I spoke to our doctor about this and she said that we should have seen the benefits by now. This is food for thought as we decide what to do moving forward. If we were seeing huge differences, I would stick to this diet like glue. I just don’t know if it’s worth it. The time, energy, cost, brain space. I’m know that there is going to be a happy medium for us, but I don’t know exactly what that is going to look like.
(more…)

a letter to Autism March 16, 2010

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Dear Autism,

I would like to have a conversation with you about how to understand you better. What language do you speak? I’m pretty good at languages so I promise to study very hard to learn. I’ll even pull all-nighters if need be. I’ve looked in every bookstore, all over the internet, joined support groups, attended conferences, and have watched my son, Oliver who is 4 1/2 and has autism. I can’t get a straight answer anywhere, from anyone. I see you everywhere, but I don’t know who you are.

Individuals whom are diagnosed with autism I see wrangling with your mere existence. Why are you here? Where do you come from? How can we get you to leave or at least better comprehend who you are? I see families torn apart, bank accounts depleted, parents who feel guilty because they think that they invited you by drinking out of plastic containers or immunizing their kids, people fighting to overcome you. It’s not just the one individual of whose life you are taking over. It is everyone who loves that person. Everyone.

Since you have invaded our life, here is a list of things that have changed for the not so good:

  • my son hits and lashes out and tells me he hates me for no visible reason
  • I find myself crying, not knowing what to do
  • commitments, following through with things, and timeliness have been replaced with utterly flaky, disorganized, frantic and erratic behavior
  • socializing or traveling as a family is out of the question
  • we get to spend the money that we would normally spend on family vacation on doctors, therapists, specialty diets, vitamins, and supplements
  • I yell a lot and it is exhausting
  • We have lost friends (hopefully not because of the yelling…)
  • I am scared when my son spaces out and is despondent
  • I don’t know what the parameters are, or even a range
  • feeling the constant judgement

Since your presence in our lives, here is a list of positives:

  • we are learning to embrace what is here and love what we are granted
  • being blessed with an amazing family and supportive friends make life so entirely rich
  • I don’t care about what others think (almost to a fault)
  • I laugh out loud, a lot!
  • realizing how little control we have in the world is surprisingly empowering
  • I have met some seriously amazing people who are on similar journeys
  • we are all far more compassionate
  • strangely, a constantly growing sense of inner peace
  • a huge respect for the amount of patience and love that my husband has for me, for our children
  • strength
  • our lovely, adorable, sweet Oliver

So, as you can see, although you bewilder us and we fear you, we embrace your presence and we are determined to better understand you because you are here. There might be diets, medicines, treatments, and therapies that make it seem like you’re fading, but I accept that you won’t be going anywhere any time soon and that’s ok because we are resilient. Every temper tantrum, every plate hurled at my head, every slap means that I’m that much closer to understanding.

I am fully aware of the fact that we are really new to this whole world. I’m looking forward to revisiting this list in a year from now, in five years, and in ten. I’m sure that I will have gained more insight and perspective. One thing I know without hesitance is that the positive list will grow longer and longer.

Love,

Karen

PS: you are welcome to throw me some clues now and then 😉

    what’s the deal here? March 16, 2010

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    okay, we’ve been doing this whole gluten free casein free diet for 3 weeks now. I am stopping to ask myself at what cost? What am I expecting to accomplish? I thought that I was seeing improvements at first. Was I imagining that? It’s not like autism is quantifiable. Perhaps if he was a number on a scale, say a 34, and by doing this diet for 3 months would bump us up to 38 or a 40, it would be worth it. I’m not seeing that. Initially, I thought that we were seeing improvements in focus and fewer tantrums. Yes, there should be data collection involved in this but believe me, at the end of one of these tantrums the very last thing that I am thinking is, ‘let me record this on a whiteboard’. What I am usually doing at that moment is praying to heaven above that I can gather enough information and perhaps some insight from that moment to make the next time better. Lets see how much time and effort went into this diet today. Spent time finding a gluten free hamburger bun recipe. Bought the ingredients at PCC while Oliver was at school and my mom was watching E. Spent a fortune. Came home and put the 14 obscure ingredients in a bowl, mixed, waited while they were rising. Cleaned the mess up. Baked them. About 2 hours elapsed. Oh, did I mention that I did this one handed as I had surgery on my left wrist? (can you sense my irritation?) All in all, they were okay. It was nice to have a home baked item as a part of dinner. I do know that everyone appreciated them as well. But the bigger question is…is this worth the effort that I’m putting forth? What else could I have accomplished with that time and money? I could have done a fun activity with my mom and the boys. Also, is this worth the sacrifice of the rest of the family? The nearly unpalatable breads, sending Julian and his friends to the garage to eat girl scout cookies so as not to upset O, the tantrums over food. We will persevere until Easter and then revaluate. There is just no well researched data that is making me stick to this for our family beyond what we allotted for. If you have any concrete information to make me stick to this further, PLEASE let me know. I would also love feedback on if I decide to reintroduce gluten or casein back, which it should be?

    On a different note, I feel fantastic! Less general inflammation, more energy, less bogged down.

    flying (GFCF) fruit loops February 19, 2010

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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

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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

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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.

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

    Posted by caizooka in autism parenting.
    Tags: , , , ,
    2 comments

    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?!

    parent support January 29, 2010

    Posted by caizooka in autism parenting.
    Tags: , , ,
    1 comment so far

    Went to my first autism parent support group tonite. It was really great. Very well organized. Very well lead. I met some really great people. There is something very similar about each of us that were there. We are all dealing with something that is so difficult and so volatile. I realized how similar our paths our and how socially isolating all of this autism can be. Being able to share all of these feelings with people who are walking on this same path with me made me feel less lonely. As similar as our kids have the similar look of autism, we all have the same look of being open to dealing with the unexpected and embracing what is here, now. A look that hangs onto hope, but contains a great amount of sadness. I felt blessed to have those people in that room with me to share their stories and lives with me. I needed to feel that after the past week. It was like a big emotional hug.

    I feel right now like I am wearing trifocals. Part of my eyes are trying to focus on the bigger picture, trying to manage everyone. Being case manager to the autism. Part of my eyes are focusing on the here and now…the pieces of food being hurled at me across the room, the fists jabbing at me, the middle school homework needing to be managed, the toddler’s shrieks of joy of learning new words. Also, the focusing on the unmanageable…the inability to control this and being overwhelmed by the day to day. My brain has gone into freeze mode. I have become numb to the hitting of me, but cannot tolerate O hitting E. That just doesn’t seem fair. The tantrums don’t seem to be ending. The seem to be escalating. Don’t know when is coming and when one is going.

    There was a great quote on the wall at the Ally meeting tonight: ‘Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”.’  I am pretty sure that resonated with everyone in the room, and most people on this journey called parenting. Different paths, same journey.