Wednesday, April 3, 2013

Autism: how we got to here.

I can't remember how old G was when I first decided I/we needed help.  It was just after Corben was born I think, that I took him to a homeopath.  We had taken him to the naturopath for all his sleep issues (which basically boiled down to: he didn't sleep longer than 2-3 hours at a time, until after he was 2) which helped a little bit, but not a ton. I remember sitting with the homeopath, and her asking me why we were there.  "There's just something about him" I said.  "There's nothing wrong with him, he's just different."  I didn't know how else to explain it.

We went through all his sensory issues, his extreme sensitivity to smell, taste, excessive noise.  He's always had tummy troubles, bowel troubles, always been a barfer.  We christened him the pukemeister when he was a few weeks old, he was always throwing up what seemed like gallons and gallons of my precious breastmilk.

He had trouble getting along with other kids.  Was constantly throwing tantrums.  He had huge seperation anxiety - dropping him off at daycare was an epic event.  Every Single Day.  Sleeping was getting better by the time he turned 2, but sleeping through the night was a RARE occurance...he was usually up two, three times.  Falling asleep was an epic event too - it was like he just couldn't shut himself off.  Forget about him going to sleep without someone with him, that was just impossible.

I heard it all - you're spoiling him, you're letting him get away with murder.  You need to sleep train him, let him cry it out, etc.  Sure, I tried all those things once or twice, but they usually always ended up in tears - his AND mine.   I KNEW that it wouldn't work, and I also knew that I wasn't spoiling him - this was my G, this was what he needed.  For better or for worse, the kid needed me to lay with him, for usually 45 to 60 minutes, for him to fall asleep.  So that's what we did.  Until, of course, his brother came along and suddenly it was too much. And now what the heck?  We didn't know.

I was asked about his birth - there was nothing traumatic, nothing out of the ordinary. We went over our diets - we hardly ever fed the kid any sugar, never anything with food colouring, because we thought that's what made him bounce off the walls. Even fruit could send him spinning.  We limited dairy. 

We talked about allergies - the kid had none.  We started using all natural products in our home before he was born - no bleach, no fragranced laundry detergent, no toxic chemical cleaners, no crap in our toothpaste.  It was all natural soaps, shampoos, cleaners, you name it.

It seemed like we were doing everything we should be doing, doing it all right, and yet...and yet there was still this nagging feeling that something just wasn't typical with this kid.  His meltdowns were more than typical.  His sleep issues, gut issues were more than typical.

And yet, in the other times of the day, he was the happiest, cutest kid around.  He was always smiling at people in the stores...until they caught his eye and he played shy.  He picked up sign language at an early age, was crawling and walking and talking at all the right times.  And as he got older, we started to realize just how darn smart the kid actually was.  He had a memory like a steel trap, still does, remembering tiny events and details from months and years ago.  He was dinosaur crazy - could tell you about every kind of dino out there, what it ate, how many "kids tall" it was.  But he wasn't terribly sports inclined.  Couldn't get him to kick a ball, ride a bike (we're still working on that one) or throw anything with any accuracy.

When he got to school age, our troubles got worse.  Putting him on the bus was a nightmare, getting him dressed and out the door was a saga most times.  And then again, some days were like butter. But it was always the tinest things that could set the day awry - socks that felt funny, the wrong kind of shirt, running late and trying to rush out the door could turn the whole day topsy-turvy and end up with one or more of us in tears.

I've sobbed a few hearty and heavy sobs in the past 6 years, let me tell you.  Of course there's guilt - is it something I'm doing wrong?  Why can't my kid be normal?  What am I not doing that other parent's are? Why can't my kid just get along with other kids?  And I'll be honest, sometimes it was downright embarrasing.  When a meltdown happened in a public place, I did everything in my power to hide it or hightail it out of wherever I was in the fastest and most discreet manner possible.  Let's face it - you see a kid losing his shit in the middle of the grocery store, and many people's first thought goes to the parent - why don't they teach the kid some manners?  Why don't they discipline the kid?  I thought what I was doing was right, but often I felt like a failure when I looked at me and my kid through someone else's eyes.

And then finally, when we started talking about moving, and switching schools, I realized that the school up here might not be as lenient about offering Griffin services without a diagnosis.  He was getting an hour a day, most days, out of the classroom to work independently with a special ed teacher. This served to re-ground him, and get him out of the sensory-overload zone that is a classroom full of 4 and 5 year old needy and loud children!  So I went to his Kindergarden teacher and asked about getting him evaluated.  She agreed that it was a good idea, often wondering herself if he might be on the spectrum.  But it was the sweet, gentle, loving and intelligent kid that she knew 70% of the time, that made her think otherwise.  Fair enough.

So here's where we sit.  We've been to the pediatrician, who is sure G has Aspergers, but we can't be officially diagnosed until we see this Developmental Pediatrician - the diagnosis comes from her.  And so we wait, lucky in the way that Griffin is getting services at the school without an official diagnosis.

And every day, we try to do the best that we know how. Parenting a kid on the spectrum involves learning a whole new set of parenting skills.  I've always known in my heart that I was meant to be a mother...I have that in me.  But the mother to a kid on the spectrum?  That's a whole other ball of wax.

We're learning, slowly, ways to cope with the things that come our way.  Some days I feel like we're only at the tip of it, and there is SO MUCH more to learn.  It feels a little overwhelming sometimes. Part of the thing that makes it really difficult for me, is that Griffin can be the sweetest, most gentle, kind soul at some moments.  And at others?  Well, lets just say he's quite the opposite.  It's like parenting a six year old Dr. Jekyll and Mr Hyde.  It's heart-swelling love, and deep sobbing tears, and everything in between...and that can be just in an hour or two! But we'll get there...we've already come so far.

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This month is all about raising awareness.  It's about telling our stories, so that maybe someone can get help with their own story that doesn't feel quite right.  I wish I had done more digging when G was younger - looking back, I think if we knew about Autism and the signs of things to look for, we may have clued in earlier to what was going on.  So my hope is that someone, anyone out there, who is struggling in one way or another, will read this story, or another story that they find as their awareness of Autism grows.  That someone has that "lightbulb moment" that sets them on the road to making life life a little bit easier, and making it all make a little more sense.

Much love,


  1. XO You are totally mother enough for this job. But I hear you...I get that it's hard. Love you lots. I know we are dealing with different stuff with ADHD, but as you know - diagnosis was a huge step and brought so much to our situation in terms of resources, community and validation (ie: you're not a bad parent). I hope that process moves along for you soon.

  2. You're doing a good job Jenn - both as a mother and as a writer. I shared the link to your blog with family and already one person has said, "I had no idea". Love! Mom