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

Posted by caizooka in autism, autism parenting, gfcf.
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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.
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a letter to Autism March 16, 2010

Posted by caizooka in autism, autism parenting.
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2 comments

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

    Posted by caizooka in autism, autism parenting, gfcf.
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    2 comments

    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.

    What am I missing? March 9, 2010

    Posted by caizooka in autism, autism parenting, gfcf.
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    Just when I think that everything’s better, out of nowhere, there are plates hurled again at breakfast. Thank you, Peter, for catching that one before the carefully peeled potatoes made their way across the kitchen.

    So, I’m revisiting the morning and wondering what went wrong along the way to spur this behavior. What were the signs? What could I have seen but didn’t?

    Oliver came downstairs smiling and prancing, seemingly happy to see Emil and I. He ran to the sofa and did a headstand. This is what he usually does. The pressure on his head seems to be soothing to him. I was making breakfast, Emil was playing with playdoh. Oliver was chirpy and grinning. I gave Emil some potatoes. He was eating them happily, minding his own business. I asked Oliver if he wanted some potatoes, too. He yelled, ‘I hate potatoes’. I ignored him. I then asked him if he might like some ketchup on them. He yelled, ‘I hate ketchup and potatoes’. I didn’t react and decided to switch from the topic of food to drink. Somewhere during this time frame, he asked if he could watch tv. I said, ‘maybe later’. I think that just added fuel to the fire.

    Then Julian came downstairs and gave him a hug and said ‘good morning’. He didn’t revolt against that. Peter came downstairs and asked him if he’d like to join us at the table. He sat down but then stated that he wanted the potatoes peeled. He said, ‘sure, no problem’ and peeled his potatoes. Sometimes Oliver needs to get his way a little bit but then he’ll get on board with the plan after you give him a little control. Today that just further enraged him. I made some eggs for the other two boys with butter. Oliver never likes eggs, so I figured that it would be okay to cook them with butter for the other boys (Oliver’s not eating dairy/gluten). Then, he says that he wants eggs. I put a piece on his plate. He then started freaking out that he wanted a bigger piece before he even had any. Then we had a full fledged tantrum starting. Plates being flipped over, etc. Peter took him upstairs.

    A couple hours later…he won’t eat more than two bites of food. He wanted a waffle. I made one. With chocolate chips and maple syrup. He ate two bites. Then he saw the left overs from breakfast and wanted the potatoes again, with no skin. Okay. Done. He ate two bites. He said he’s not hungry. My mom said to make him a milkshake. Good idea. Made him one (dairy/gluten free of course) with a banana in it. He drank about 1/2 cup.

    Is it the gluten-free thing? Has he lost his appetite for food because of that? Is that causing him the tantrums? Is it that he was sick the past few days and he hasn’t eaten so he’s not hungry yet? Prior to this I was noticing how well he was doing. Fewer tantrums, better focus. More creativity and lots more laughter. He was bee-bopping around here last week in great spirits. He was also easier to talk into things and push the boundaries a bit. Now that he doesn’t seem to be feeling as well, he’s not at all flexible and is not easy to get along with. He simply cannot rebound well.

    I wish that I had more answers for my questions. I feel like when we have a string of good days in a row I get closer to figuring this out. Then we’ll face a health set back and it seems like everything that we learned doesn’t work and the rules have been rewritten.

    my baby rides the short bus, too March 8, 2010

    Posted by caizooka in autism, autism parenting.
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    I went to a book reading last week of, ‘My Baby Rides the Short Bus‘. It’s a collection of essays written by ‘non-conformist’ parents of disabled children. I have to admit that I didn’t know that going into it. Had I known, I might not have gone. I would consider myself somewhat conformist. Conformity is defined as ‘to act in accordance or harmony; to comply; to become similar in form or character; to bring to agreement.’ Raised Japanese American and Catholic pretty much screams ‘conformity’. Who are non-conformist parents anyways? What would I have in common with them? I decided to listen and find out. One of the moms began reading her essay from the book and I was completely taken in. She describes herself as being a lesbian teenager mom with a deaf son. She spoke through her tears as she read off the page. You could feel the pain that she has endured through out her journey and also the tremendous amount of love that she has for her son. The honesty in which she writes and tells her story is breathtakingly beautiful. All of the stories were like this. Parents making tough choices to do the best for their kids. Anticipating what their families needs are and sacrificing their own. Uneasy of a world that judges our ‘not normal’ children and fearful of where they will find their place.

    So, if being a ‘non-conformist’ parent means that I am a mom that is willing to stand up for her child and guide them despite the prejudices and judgements, then, ‘yes, please, sign me, up, too!’

    I’ve read about half of the essays in the book and I’ve learned alot about what it takes to be an advocate for your child, how to navigate the IEP process, and how to bring laughter to the surface in difficult times. I’m grateful to this group of parents for sharing their stories.

    Love you, Temple Grandin March 3, 2010

    Posted by caizooka in autism, autism parenting.
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    Although I haven’t read her books or saw the HBO special based upon her life, I just watched the C-Span InDepth interview with Temple Grandin. It’s long but as a mom of an autistic child, it was extremely insightful and worth it. She was diagnosed with autism when she was four. She is nearly 60 now and a Ph.D university professor. I LOVE how she said that autistic people can continually keep learning and developing, and improving! I needed to hear this hope from her. I need to feel reassurance that I didn’t miss the proverbial window of opportunity with an earlier diagnosis for Oliver. I have been beating myself up about this lately.

    She is so literal. So is Ollie. Yesterday he walked in when I was watching the final episode of The Bachelor. They had flown the girls in on helicopters in grand fashion for the finale. One of the girls was crying because Jake was dumping her. Oliver said, ‘Why is that girl so sad? Oh, it’s because her helicopter just left’. I LOVE that kid! Sometimes when life gets so complex and convoluted, it is refreshing to be confronted with such unpretentious, blatant honesty. To laugh when you’re happy and cry when you’re sad. Or, in Oliver’s case scream with joy when he’s happy, and flip over coffee tables when he’s mad.

    I was relieved to hear Temple Grandin state that she understands what is inappropriate and what is appropriate because she learned this. And, she is able to effectively articulate this. In the past year Oliver has learned so much and made such strides. Yes, it is true that picking up on social cues is not innate to him as it is to you and I, but he CAN learn this. We can teach him this. So, it is possible that he may someday understand that it is not socially acceptable to show people his Thomas the Train underwear when first meeting them.

    Here are some other important take aways from her interview:

    -mentors and setting goals were vital to her.

    -autism is a very broad spectrum. She mentions that there are not enough expectations for the children on the higher end of the spectrum. In the 50s, they were forced to have manners and to learn different social cues.

    -all kids need to have a way to communicate. There is much more going on in these kids brains that you think.

    -autistic kids need to have contact with normal students.

    -she spoke of her middle school/high school years as, ‘socializing with teenagers is not a life skill that I need’. From here she elaborated that it’s a shame that schools have removed hands on job skills/vocational skills for different kinds of kids. These skills are necessary in order to find the right job for autistic/non-mainstream people to give them life skills.

    -she spoke intensely that normal people cannot imagine the alternate sensory reality that autistic people live. Apparently florescent lights are a huge problem. The flickering can drive people crazy. (I didn’t know this!) There are ways to accommodate for other sensory processing disorders.

    -she touched upon the whole BAD plastics theory that I subscribe to fully. (they’re leaching bad, bad things into our bodies). She also believes that biomedical approaches need to be utilized in conjunction with medicinal approaches AND that the genetics component to autism is huge.

    -she mentioned that she was ‘allowed to act autistic for an hour a day’. She had high expectations set for her that she was upheld to but then was allowed to be free, too.

    -she doesn’t believe that there is necessarily an increase in aspergers/autistic kids, but rather, this less structured society makes it more apparent and it is hurtful to them.

    -autism is a gift.

    This woman is a true pioneer. Her insight and her incredible spirit are a true gift to those of us who are just starting in this journey. We are all benefitting from her inspiration.