Our horse and pony show: How we give autism the boot

by arianne

I get asked a lot how we do it, what we do to help recover our children with autism.  Most of the time our children can “pass” as typical kids when out in public.  My 6 year old, especially, is doing so well that his issues are minimal now, compared to how bad they used to be.  Some may even think we are out of the woods with him.

We feel very blessed for his progress, but we are far from out of the woods.  There is a whole horse and pony show going on behind the scenes here at home.  We can’t blink, can’t rest, can’t stop anything we are doing, or he and his brothers regress back into the autism world faster than anything I’ve ever seen.  It’s still there, lurking.  The darkness, the world that once held him prisoner, it persists still.

My parents like to share some of my blog posts with our extended family from time to time, and during one email exchange I felt my dad communicated very well what all goes on here at home.  I’m reprinting that email here for you now:

It’s so good to celebrate Charlie’s progress every day.  Fortunately, his special private Montessori schooling, special diet and supplements, and his parents’ monumental effort through their deliberate daily work with Charlie, help him keep the progress he has made, so he doesn’t regress.  Same for his brothers, Jamie and Jonah.

Through the massive research Jacob and Arianne have done, in addition to their at-home therapy for the boys, they’ve come up with a more or less three prong approach to addressing their special needs. Number one is the private Montessori school that gives them the perfect environment, i.e. small class room size, very low teacher to student ratio (1:5), and a child led approach to learning, particularly encouraging healthy social interaction among their peers.  **Editor’s note: the kids are also in occupational and behavior therapy programs as part of this “prong”**

Prong two is diet.  They must maintain a very strict diet with them; gluten free, dairy free, corn and soy free, and organic–nothing that includes any metals, corn syrup, preservatives, etc., all of which, through their individual experience with each of the boys, is critical to avoid.  If they eat one thing that contains items on the excluded list, they can immediately see signs of regression in their behavior.  You can imagine how much attention, labor, patience and love that takes to maintain each day.  If it weren’t for the visible results they have seen over and over, Jacob and Arianne would not be able to do it.  And almost all their dietary items can only be purchased at specialty food stores (i.e. Whole Foods or other organic food stores).


**A sampling of what the kids take every day

Third prong-supplements.  You would not believe the huge array of nutritional supplements these boys take every day. Again through individual repeated testing and experience and intense research, Jacob and Arianne have come up with the right supplements for each of the boys (and the boys individually have different supplement needs–their kitchen counter looks like a pharmacy).  These too are critical. If they miss a dose or run out, their behavior almost immediately regresses.  Arianne and Jacob’s constant fear, is that if the boys don’t maintain all 3 of these approaches and they regress, could the regression be permanent?  The research is not able to tell them, one way or another.

Thankfully they belong to a local association of parents with children similarly affected, which has been instrumental in achieving the success they’ve had so far.  I’m so proud of the personal sacrifice that Arianne and Jacob have made for their boys, in many ways- career, professional, social, financial, etc.  Their Faith carries them through.

Love,

John

All these things we do come after 2 years of intensive therapy a couple years ago.  That journey got us to the place we are now, where these things listed in the email can really take root and grow.  These ways of recovery don’t work for all children with autism, I’m seeing it in my own children as we continue to search for the perfect protocol for my youngest son.  But we will never stop trying new things, and will never, ever give up believing that our kids can get better.

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