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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.

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

    Posted by caizooka in autism parenting.
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    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?!