For those of you that know me, you know that I've got a son named Barron. What you may not know about Barron is that in addition to being a total cutie, he is also severely autistic.
He was diagnosed at the age of 2. He is now three and a half and as you might suspect, the past year and a half has been quite a journey. What you might not have suspected though is that the journey has been one filled with tremendous growth, love and compassion (and before I sound like to much of a saint, no small amount of worry, angst and frustration as well).
I've decided to start this blog as a way of keeping track of Barron's progress, giving him something to read about when he gets older and as a way of giving people some insight into the experience of being a parent of a child with autism. Autism is an issue that is on the rise (I hesitate to call it a disease any more as I think there's a bigger picture to all of this), having moved from an incidence of 1 in 10,000 in the mid '70's to an incidence of 1 in 150 (and in some of the most recent research, 1 in 68!).
While there's a great deal of controversy about the causes of autism, the increasing rates should be a clarion call to us all that there's a real problem facing us all and that these kids (and adults) with ASD are the proverbial canaries in the coalmine. I'll blog more about that later, for now, I'd like to give you a quick run down of the last year and a half...
When Barron was diagnosed with autism, we weren't surprised. He had missed some developmental milestones (pointing, orienting to noise and late walking) and often seemed to be lost in his own world. Not that it seemed to be a bad world - he was very happy and giggly and was a genuinely happy kid.
When we received the diagnosis, we booked a flight to the next DAN (Defeat Autism Now!) conference to look at what the latest research had to say about autism. If you were to look at the conventional approach to autism, you would be shocked to discover that it's, well, lacking. Beyond some behavioural interventions and medicating some symptoms, there was very little being offered by the traditional medical establishment. DAN however, was a completely different experience...
Here was a group of parents, clinicians and researchers working together to help find answers for their children - that's right, almost all of the clinicians and researchers at the conference had children on the spectrum. I've never experienced that kind of cohesion in a group before and must say I was blown away! Just as importantly, I also started to get a different view of autism...
When Barron was first diagnosed with autism, I thought "My son is broken, I must fix him!" - typical clinician behaviour in retrospect. Since DAN, my viewpoint has evolved and changed significantly. I no longer feel the need to "fix" my son because in my eyes, he's not broken. He's a cool little dude in all respects, just the way he is and I have no more desire for him to be "normal" (whatever that is) than I desire to be normal myself.
What I do want to give Barron is as many choices as possible in his life and based on where he was at 2, he had a very limited set of choices. To help balance his system, so that he could become the most that he's meant to be, we embarked on a number of therapies to help him out.
To Date, we've done the following therapies with Barron:
Vitamins: (multi, designed for ASD by Prothera). These have been great! They're powdered and taste vaguely of berries.
Fish-Oil: Seems to help with Barron's focus. We use the Nutra-Sea apple flavour.
Pro-Biotics: Barron's Organic acid testing (from Great Plains Labs) indicated a candida issue, so we chose a pro-biotic that is helpful with yeast overgrowth.
Nystatin: To help with the yeast. It's been great, increasing our solid poop occurrence substantially (seriously, unless you're a parent of a child with ASD, you have no idea how awesome a solid turd is!). Nystatin also doesn't cross the blood gut barrier so it can be used with no dangers of toxicity,
GABA: Many kids with ASD have overactive glutamate action in their systems which winds them up. GABA helps balance that tendency and calms them. This has been great for Barron and is part of what helps keep him in the "happy" zone and not the "anxious" zone.
MitoThera: A combo supplement from Prothera which boosts mitochondrial function. Barron's organic acid testing showed a deficiency on mitochondrial functioning which is key for the energy hungry central nervous system.
L-Glutamine: One of my favorite basic supplements which helps rebuild the intestinal lining and feed the brain. It also enhances GABA production.
Ambrotose: This is a product which contains multiple plant polysacharides which the body uses for intercellular communication. This has had a dramatic effect on Barron's speech, which has been one of his major stumbling blocks. I would recommend Ambrotose Advanced as the classic has some oat product in it which may contain gluten.
GFCF Diet: This stands for "Gluten Free, Casein Free" diet. Gluten is a protein found in many grains (wheat being the most notable offender in our culture) and Casein is a protein found in milk products. This was HUGE - when we got Barron off of these foods, he rejoined us in this world, his insane pain tolerance became normal and he paid attention to us. We have since reintroduced some dairy and he's doing well with that. Gluten, not so much (can you say "Rangy demon child?").
Tomatis type Music Therapy: He did well with one listening module that was supposed to help him with balance and coordination which definitely improved. He has put up a lot of resistance to the next module so we have yet to complete that one.
Hyperbaric Therapy: Jen and I purchased a high pressure, enriched air (1.3 ATA, 31% oxygen) system to treat Barron at home this January. We've been very happy with the results to date, seeing a rapid rise in Barron's cognition, paying attention, verbal comprehension and to a lesser degree, verbal production. He loves it, and I've come to appreciate it's effects as I go diving with him as well.
Well that's it for now! There's more to say, but it will have to wait for another day!