Autism - If I had to do it over again – Part 1

I am becoming more aware of how widely different each child with autism is.  And I’m not just talking between my two boys.  Each child (and family) is faced with their own similar, yet vastly different set of challenges.  I would be arrogant AND blatantly ignorant to say that I understood what another family is going thru.  Not understand completely at least.  Some of it, yes, but definitely not all.

I was thinking about what I would do differently if I had to do it over again and funnily enough, not one of the things included ‘professional’ help.  Other than the great Shauna of course.  The Guru of Autism, I think she is.  I admire her passion and creativity to stomp this thing down.  But for my part, the ‘other’ therapy, other than Shauna’s genius ABA program (with other therapies intermingled), what would I do differently when we began our ‘hurry up and get on the next waiting list’ journey.

When someone was finally able to give us an honest answer about the boys indicating that it probably was autism (thank you Sue), we started the wait list for an Autism Assessment and I put the boys on a GFCF diet.  We are fortunate enough to be financially set so the huge extra cost of the food for them wasn’t an issue.  Cutting them off Goldfish Crackers WAS an issue.

The paediatrician we were referred to seemed like a nice lady but did not instil any confidence whatsoever that she knew much about it.  She didn’t even seem to know what the GFCF diet was.  In my books, being nice isn’t enough.  Seriously!  She ordered up a battery of medical tests but didn’t explain or tell me what any of them were.  In hindsight, I should have had her explain.  In reality, I had one little boy there (Randy had taken the other to the car already), who did not want to be there and was going through her desk, much to her dismay. 

I’d love to say that I was completely on top of this whole process.  I wasn’t.  In the back of my mind I was truly hoping it wasn’t as serious as it was/is.  In a life altering crisis, your mind is never ‘rational’.  When it comes to your children’s health, you are never ‘rational’.  I don’t ever want to be that detached emotionally from them.  More aware, yes, not detached.

What the diet did for us:

Nate – craver of carbs.  Still is, but doesn’t flip out like he used to if I tell him ‘no more’.

Josh – craver of milk.  Still is, rice milk now though.  More alert.  More interactive.

We still haven’t given them nuts.  Randy has some nut allergies where his tongue tingles and his throat closes up.  Not wanting that to happen to the boys when they can’t tell us what the problem is.

The diet sucks.  But I wouldn’t stop it.  We buy most of the food for them because they (especially Nate) is still such a picky eater that new foods won’t even be tried).  I’ve baked stuff before, only to have Randy and I eat it, or it turn out so gross we wouldn’t touch it, and we throw it out.  Seriously, it can’t be impossible to make good GFCF basic food!  It is just so much trial and error.

Next up …. Methyl B12!!!!!

H