26 July, 2012

Then and Now

Thomas Jefferson, George Washington, Albert Einstein, Charles Darwin, Marie Curie, Temple Grandin, Bill Gates, Alfred Hitchcock, Sir Isaac Newton, Jane Austen, Jim Henson, Hans Christian Anderson, Michelangelo, Mozart, George Orwell, Beethoven, Thomas Edison, Henry Ford, Mark Twain, Warren Buffett.............

All are excellent role models and additionally have either been diagnosed with Asperger's Syndrome or high functioning autism.  Obviously, those who lived earlier in history displayed many of the characteristics and traits present in the modern day diagnosis.  The abundance of positive role models that exist and the volume of written materials help to support the theory of the "gift" and not on "fixing" them.  I recently checked out an abundance of materials written by Temple Grandin, Molly and I are reading them together.  Dr. Grandin's advocacy for autism and animal science are especially beneficial as Molly would like to be an animal conservationist someday.  Thankfully our zoos have amazing programs for the future conservationist as well and she will be spending a week learning about the animals, preparing their food and embarking on feeding (no pun!) her most high interest area.

I do wonder however, what life must have been like for these outliers who were noticeably different and probably ostracized by most of society.  I am looking forward to reading more of Dr. Grandin's book and what it was like to be her.  With my interest in historical figures, I do have to wonder can you be forced and bullied into assimilation?  A recent meeting with a therapist left me wondering (not for the first time) if I have Asperger's as well.  She mentioned that if we hadn't been tuned into Molly's idiosyncrasies she could have very easily fallen through the cracks and just been labeled  "a socially awkward, bright, young girl."  Hmmmm..........

Again, I wonder, is it possible to be forced or to choose to assimilate?  This is not by any means a poor me synopsis!  Everything happens for a reason, although at times it can be extremely painful, I truly believe this.  I was extremely awkward as a young girl and had merciless bullies.  One in particular used to pick on me to no end and make up things when she ran out of what was wrong with me.  I also remember a boy asking me why I walked the way I did.  I remember wondering what he was talking about? I made a mental note, discovered my arms didn't move when I walked and practiced my new gait.  My family was intolerant to my peculiar behavior and my teachers were useless - I actually had one who repeatedly called me "motormouth" in front of the entire class.  Did I consciously choose to make the shift in my behavior and assimilate?  Was my awkward stage that much different than everyone else's?  I remember a big shift in my ability to make and keep friends when I was in High School.  As in the books that we are reading helping with social cues that most with Asperger's don't recognize is the unfortunate fact that appearance is a large part of the internal judging of peers.  After a long bout as a chubby tomboy (yes, I ATE my feelings!)  I emerged eager to try on fashionable, beautiful clothes and also transform myself.  What is funny is that although I knew that I was smart, I was often labeled a flake.  Looking back on it now, I wonder if perhaps I was missing the meaning of what was being said as it didn't translate to literal meaning.  Actually being able to participate and socialize with a neurotypical social group may have been just what I needed to assimilate, although always feeling different on the inside.

What worries me the most though, for my daughter and other children and adults with Asperger's and High Functioning Autism is the desire to self medicate.  It took me a very long time to realize that I did that.  Through my teens, after college and beyond I often drank too much and enjoyed it tremendously because alcohol temporarily made me feel more normal.  I can look back on it now and use it as a life learning experience which will certainly allow me to share and teach others before they make the same mistakes.

As I mentioned before, I do believe everything happens for a reason.  Can some choose to assimilate and mask their eccentricities?  Yes.  If I do not have Asperger's I definitely have many of the traits that I passed on to Molly in particular.  Just ask my college roommates (YOU KNOW WHO YOU ARE!) about my aloofness and rude behavior when I arrived at school.  I continue on this voyage knowing that everything I have been exposed to on this wild ride - the bullies, the friends, successes, disappointments and a new found passion for advocacy will all be beneficial in the long run.  I do have to mention on a final note that I am so proud of Molly.  She embraces who she is and unlike me feels no need to assimilate.  She would not, under any circumstances remove her Asperger's - it is a part of her.  As painful as it may be to have the social struggles she endures, she has a very positive self-identification and confidence.  She still wakes up every morning eager to start the day and would prefer adorning her sensory friendly clothes in which to do so.  We recently attended a funeral and spent quite a bit of time trying to find something for her to wear that was both comfortable and appropriate.  I smiled as my little girl who has not worn dresses in several years put on a dress, two days in a row, and looked beautiful at that!  Would it last?  Would she suddenly transform? Of course not, but I wouldn't change a thing!

16 July, 2012

Gluten is like crack

I know that saying gluten is like crack may seem a bit preposterous to some of you and others will quickly dismiss diet as having anything to do with behavior, but some of you will nod your heads quietly in agreement knowing exactly of which I speak!  


Before the diagnosis, when Molly was 7, she fell off of the growth charts and began breaking out in hives regularly.  The hives were located all over her body and at times, alarmingly, her lips would swell to animated proportions.  I tried the elimination diet (removal of dairy, wheat, sugar, etc.).  I questioned every perceivable exposure and chemical that we came into contact with.  Another brick wall and doctors not offering any answers - just Benadryl &  epi-pens.  I began researching once again, this time symptoms as well as behaviors.  The Celiac foundation (www.celiac.org) had an abundance of information and many of the characteristics of what I was noting with Molly.  I removed gluten immediately.  For those of you who are new to gluten free or thinking of trying it, gluten can be found in:

  • wheat
  • rye
  • barley
  • malt
  • modified food starch 
  • hides in natural flavors
  • glucose syrup
  • oats (that are manufactured on machines that also process the above items)
  • any items that share equipment with items found in ingredients above.

We have a running list of things we have tried - all are sensory tested and approved which is why we recommend (see list below)!  Soy sauce & broths/stocks are some of the trickiest items in the beginning as they both utilize wheat when not necessary as a filler & preservative.  Going gluten free may seem  a bit daunting, but with research it can be done with little inconvenience - there are so many more options available today than even 5 years ago!


There was a remarkable difference as soon as gluten was removed from Molly's diet. The hives and diarrhea that were my main concern immediately ceased. I had read that gluten sensitivity can affect mood/behavior but was not putting any stock in seeing benefits associated with this aspect.  Within 48 hours much of her hyperactivity and other strange behaviors (animal noises and others) were gone.  On a more detailed level her focus increased remarkably as well and diminished anxiety and increased social abilities (although certainly not neurotypical - but an improvement nonetheless).  I mentioned the removal of gluten to my then pediatrician who thought it may be a good idea to give her the blood test for Celiac.  The results came back negative, but they are only accurate in 7 out of 10 cases.  The doctors then suggested I re-injure her small intestine by exposing her to gluten again for 6 months and then having her re-evaluated and scoped.  No thanks!  I followed up with a pediatric gastrointestinal specialist who agreed - with our Northern European ancestry (Scottish, Irish & Dutch) better to just reap the benefits than injure, our course of action would not differ anyway.  Did I mention that she immediately began thriving as well?  She started putting on weight (finally) and jumped back on the growth chart.


Gluten products are such a mainstay of American culture that at times I have caved.  Allowing her to indulge in gluten inevitably reinforces our decision - always resulting in upset stomach, hives and behavior much like a pinball active in the throws of a pinball game.  It is a huge deal to a "tween" who is trying so hard to fit in and has to differ in diet as well.  She can't go to the lunchroom and order what everyone else is having (which is gross by the way, but our school district doesn't entertain the thought of changing its "healthy choices" to actually be healthy & nutritious).   I'm not asking for an abundance, just some healthy choices for those who are gluten free aside from nachos and ice cream and the occasional protein smoothie.  I am amazed and a bit ashamed of our society when I look at European lunches that are provided for their students.  The selections are undeniably healthy and lack all of the preservatives and chemicals our students eat on a regular basis.  The old adage "You are what you eat" should make Americans cringe.  There is a reason that European countries no longer accept our genetically modified, pesticide rich exports.


Upon choosing a gluten free diet for Molly, I soon became a frustrated mom trying to find good foods for my daughter and coming up empty handed.  I began experimenting with different brands, liking very little and loving even less.  After many trials and errors (just ask my family!) I developed my own flour by mixing white rice flour, long grain rice flour, potato starch, sweet rice flour, tapioca starch and xantham gum (yes, it is for sale!  See our website for further info: www.sugarmagnoliabakingco.com).  Unlike some of the mixes we tried initially it imitates cake flour and isn't grainy at all.  I also began a baking company - selling both GF and regular goods.  We are still formulating recipes and will be trying to release our cookbook "Gluten Free with Sugar Magnolia Baking Co." within the next year.  We also found a great way to donate money to Autism Speaks by selling our puzzle piece cookies.  For every dozen cookies that are sold $5 will be directly donated to Autism Speaks.  Although we will feature other philanthropies Autism Speaks will always be listed.


It is worth noting that there has been a reported incidence of "leaky gut syndrome" associated with Autism.  I know many who are on a GF diet, some also remove dairy and are GF and CF (casein free). Removing casein can be remarkable, especially in those who struggle with communication.  I will never understand those who are so quick to dismiss diet as having a role in their child's/client's development, especially neurological.  In the very beginning, I questioned the role diet/supplements may play, asking a well-respected pediatric neuropsychologist his thoughts - he dismissed, even chuckled a bit at the mention. I am not stating that your child will be "cured".  I am however, stating that there are proven benefits to eliminating certain aspects of your child's diet that could be hindering their development.  As in the Autistic Community as well as in the Neurotypical society 
"You are what you eat!"
Good Gluten Free Finds:
You will note that most of these are snack foods - we substitute many of these when not eating fresh fruits & vegetables or other non-boxed food!

Please note: Always check labels! Companies are always making changes!

ALL SCHAR PRODUTS (except crackers) - this includes pizza crust, bread, pasta, etc.
Trader Joe's Rice mac & cheese
Trader Joe's chicken tacos
Trader Joe's Taquitos
Annie's Rice mac (close 2nd)
Bell & Evans Air chilled chicken breast tenders
San-J organic tamari (wheat-free soy sauce)
Pamela's GF pancake/waffle mix
Yoplait yogurt (most flavors)
EnviroKids Panda Puffs cereal
EnviroKids Leapin Lemur cereal
Vans Frozen Waffles GF
Costco rotisserie chicken
Pacific chicken broth
Pacific roasted pepper/tomato soup
Quinoa pasta 
Bionaturae pasta (I buy this in cases from Whole Foods) - best yet!
Mrs. Mays products (any that are gf)
Mi-Del chocolate chip gf cookies
Mi-Del Ginger snaps
Ians cookie buttons cinnamon
CheeBee Rolls (frozen)
Kinnickkinick chocolate doughnuts (frozen)
Tostitos organic chips
Glutino frozen pizza
Trader Joe's GF granola
Kinnickkinick frozen pizza crusts
San-J szechuan sauce
Glutino lemon wafers
Boar's head pepperoni