our journey of hope and healing through autism

Sleep Deprivation {How we came to pursue biomedical interventions for autism}

Last night, Hannah was awake for around 4 hours in the night, crying and screaming.  It’s amazing how one night of really disturbed sleep can make me feel cranky and emotional.
 Compromised sleep used to be par for the course around here. For at least a year before Hannah was diagnosed, she had terrible sleep disturbances.  Between 2 and 4 nights a week, Hannah would be up for 2-4 hours.  At the best of times, she would lay awake moaning.  At the worst of times she would scream and cry.  Because she couldn’t communicate well, she couldn’t tell us what the problem was.  Numerous times we made trips to the doctor thinking that she must have an ear infection, but not so.  As you can imagine, she grew more and more tired, and more agitated much of the day time.  She started banging her head, and grew increasingly violent when asked to do simple things she didn’t want to do (like sit at the table to eat).  I often avoiding going out with Hannah, because whatever was causing the pain and lack of sleep was turning my once pleasant and happy little girl into a girl who who had terrible rages at the drop of a hat.  I had to learn a special way to hold her on my lap when she threw fits because on the bad days (which were coming more and more often during the winter of 2011-2012) she would either bang her head on the wall, or bite, scratch, hit and headbutt me.  A few times when she was sitting on my lap, she headbutted me so hard I thought she might have broken my nose.  On a “bad day”, I’d have to hold her to keep her from hurting herself or me 8 or more times a day.  It doesn’t take very many days like that to wonder where life is heading for your child, or to wonder how you will restrain them at 7 and will they still tantrum at 14 and so on.
 Between the sleep deprivation and the emotional toll of withstanding the rages, and the uncertainty of waiting for a diagnosis, it was the darkest time of my entire life.    Hannah was attending a special preschool each weekday morning, and working on speech activities with me each afternoon.  Her language was slowly improving, but her tantrums were getting worse, not better.  The psychologist who worked for our special needs preschool had no  help-with-sleeping  ideas that we hadn’t already tried.    Whatever the roots of autism were, it was turning my daughters life into an existence of pain and frustration.  A reality I could barely survive on a day to day basis, let alone accept (though I tried)as the long term prospect.
In early April of this year, our neighbor told us about a TV program she’d watched -The Autism Enigma from David Suzuki’s series, The Nature of Things.   The program shared some of the new research on what may cause autism.  I sat down to watch the video online once the kids were in bed, and it wouldn’t load. I tried again and again, with no luck.  After awhile, I grew impatient and began reading the transcripts of the interviews with the researchers, since I couldn’t get the program itself to load.  I read until it was my bedtime.   I couldn’t sleep, so I got back up and read more.  The science was compelling, and the scientists were careful to not draw conclusions that were not fully supported by the data.  I read everything there was to read, including the viewers comments on the transcripts.  One viewer suggested the Specific Carbohydrate Diet was in harmony with these scientific findings.  I spent hours that night,  reading about the research, and learning about a diet I’d never heard of before.  Everything made sense, was carefully and methodically presented, and was not sensationalized.   Nathan and I felt the  strong impression that we should try this diet with Hannah.   By the end of that weekend, we’d eliminated  all foods that weren’t allowed on the Specific Carbohydrate Diet.  Quite quickly, Hannah’s sleeping improved.
The Specific Carbohydrate diet dictates you eliminate all foods except meat, meat broth and cooked carrots for a few days, then introduce only two new well-cooked foods a week.  As we did this, we found that many, many foods made Hannah gassy and uncomfortable, and impacted her sleep.  Through trial and error, we were able to find that if we stuck to a diet of very simple basic foods, Hannah’s hours of crying in the night were a thing of the past.  Other good things we’ve noticed early on were an acceleration in Hannah’s ability to remember names, frequency of pointing, increases in the texture of foods she’ll accept, and decreases in her sensory sensitivities.  In the past few weeks, we’ve noticed that Hannah is incorporating her peers play ideas into her own, which is really exciting.  Did the diet help Hannah’s autism, or merely the underlying digestive issues, freeing her from pain and exhaustion enough that she can learn faster?  While I can’t say conclusively that the SCD helps with anything other than sleep, I feel pretty confident that the diet changes are helping therapy be more effective.  The sleep improvements alone make it worth it!
Seeing such big improvements in Hannah with just one biomedical intervention has led us to feel that we are likely to see improvements with other biomedical treatments.  We plan to work slowly, adding one thing at a time, so that we can see what helps and what doesn’t.  Such an adventure.  🙂

10 comments on “Sleep Deprivation {How we came to pursue biomedical interventions for autism}

  1. fit4fifty
    November 19, 2012

    Becky, I love your family so much. As I type this tears start to form in my eyes thinking about it. You are an amazing Mom, to ALL of your children. I know that our Father in Heaven will continue to guide both you and Nathan as you work on and enjoy moments with your sweet Hannah, also Sarah and Evan too. xo

  2. Natalie
    December 4, 2012

    What a great post! I am glad you are all getting more sleep. 🙂 Hannah is truly blessed to have you as her mother. You are amazing.

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