Apraxia, Autism and “Neurological Gumbo”

By on Jan 5, 2018 in Apraxia | 6 comments

As any good “biomedical parent” does, I have been doing a lot of research over these past few months since our 3 year old daughter Rory was diagnosed with apraxia.  I’ve learned a lot about apraxia, sensory processing disorder, autism, vaccines, chelation, gut health, inflammation, food intolerances and how our bodies and especially our brains work. I’ve learned about nutrition and vitamins and supplements and how these things can heal so many illnesses just by adding or removing something to or from our diets.  It’s seriously like magic and I wish I could shout the things I’ve learned from the mountaintops…but even just shouting them on Facebook is probably driving a lot of my friends crazy.

I’ve become that cuckoo lady who is always talking about things like the Nemechek Protocol…SIBO and olive oil and omega 3-6 balance, birds and fish and Minions in your brain.  After reading Cure Your Child With Food by Kelly Dorfman, I’ve told people to try removing gluten from their children’s diets to stop rage, and dairy from their diets to stop ear infections.  I HOPE that my incessant babbling about these things is helpful, and I know that I’ve had a lot of friends and even people I barely know reach out to me for advice which leads me to believe that it’s worth it. If it’s annoying, I apologize, but I won’t stop because I feel like it’s my purpose to help other parents in my situation find the answers that they may be desperately seeking just like I was less than a year ago.

It may seem strange that a graphic designer with absolutely no background in science is so interested in these subjects, but I am fascinated and hooked, and I feel like there is a potential career path for me in helping people solve these mysteries of the “neurological gumbo” that our children are facing.  Of course I feel like I need to solve my own child’s issues first before I claim to have the ability to truly help anyone else, but I feel like once I get to the other side–because I INSIST that there will be an “other side” when we reclaim our daughter’s life–I will do my best to help other people get there too.

As many parents who stumble upon the biomedical world do, I have developed my own theories as to what is affecting my child and so many of our children.  Rory, dubbed a “mystery” by all of her early therapists and doctors because they couldn’t figure her out, was officially diagnosed with apraxia, sensory processing disorder and dyspraxia last summer after I diagnosed her myself and found medical professionals who agreed with me.  We had her tested for autism via the ADOS test but her developmental pediatrician and the psychologist who tested her agreed that she was too socially aware to be diagnosed with autism even though she has plenty of the symptoms of ASD.  I admit, it was a relief when they said she didn’t have it, because autism is something we have all heard about, and it can be a bit scary.  But what I understand now that I didn’t full grasp then was that apraxia and sensory processing disorder are so closely related to autism that our life is just as challenging as many families who have children on the autism spectrum. So here’s my crazy theory:

I believe that what we know now as autism, apraxia, sensory processing disorder, ADHD, and all of these “neurological gumbo” disorders are all on a larger spectrum together…lots of ingredients thrown into one big pot, and each child gets a scoop that may only have some of the ingredients, but they are all a possibility and all related.  I believe that there are “true” neurological disorders like the autism and apraxia that were rare prior to the early 90s–and those still exist today separate from what I am talking about in this post–but the new neurological disorders that have become epidemic in industrialized nations around the world are caused and exacerbated by environmental factors and–hopefully–curable.

If you are a biomedical parent that statement probably doesn’t sound too crazy, but if you’re not, you’re probably rolling your eyes and thinking I’m a little bit bonkers (heck, I was rolling MY eyes at this stuff this time last year).  But once you fall down the rabbit hole and read stories of these children who have been lost and found again, see the video proof of children who were nonverbal and socially withdrawn who become normal “neurotypical” children after going through these treatments, you start to believe that your child can get their own miracle too.  And you become willing to do whatever it takes to get it for them.

While there is still SO much to learn, and really, learning about how I can help Rory has become more full-time than my graphic design business (shoutout to Perceptivity Studio, which I started so I could work from home and still be a mommy, and I just celebrated my 10 YEAR anniversary which blows my mind) I have learned enough to understand that our world has become a very scary place when it comes to how our food is produced and how that affects our guts and brains; how the medical profession has in a way traded easily curable diseases like measles and chicken pox for an autism epidemic; and how genetic mutations can affect how a child’s body processes things like vaccines and anesthesia.  I’ve found that going into the pediatrician’s office and asking for the type of testing Rory needed for us to understand what was going on inside her body was met with blank stares…that even going to an allergy doctor and asking for a full panel of food allergy testing “couldn’t be done” (they would only test for the things we suspected were problems…but what if we missed the one that was really important??) and I had to work with an amazing pediatric nutritionist who had “been there done that” with her own children, FoodScript, to get these things done.  We had a Micronutrient blood panel run to find out how all of her nutrient levels were functioning and an 88 Dietary Antigen Complete IgE, IgG, IgG complement blood panel done to find out for sure what food intolerances we are dealing with (we had a hair test a few months ago and have been doing an elimination diet) but I would like to have a better understanding of what her body is reacting to.  We still have so many tests to do (next up are some form of genetic testing, amino acids, organic acids, intestinal barrier analysis and comprehensive stool analysis) but what blows my mind the most is how difficult it is to get this information.  If you can cure a child with supplements, and honestly, I think you can, why wouldn’t you go to the trouble of getting a complete picture of what is going on in a child’s body?  When they go for a “well check” why not do the things that will actually keep them well throughout their whole lives?

There is still so much to say, and I will say it all in time (because my monkeys need to go to bed now and my mommy writing time is up), but this mama has officially fallen down the rabbit hole.  I am going to become a crazy, hippy dippy, anti-vaxxer who collects fish oil like some people collect wine, but I hope and believe that my family will be all the better and healthier for it.