Postcard from Autism Land #3

14 07 2008

The other day, Mr. and I came across some video clips of Neener and Roo when they were seven months old. The same age as Squiggles now. Seeing those videos affected me very deeply, and in ways I had not anticipated. Of course there was the warm fuzzy nostalgia of seeing my firstborns back when they were relatively new, giggling and wiggling around. And naturally, it got me thinking about those early days. About how there were two babies in my inexperienced 26 year old hands. About how there were twice the diapers, twice the feedings, and half the sleep that we are now experiencing with Squiggles. It dawned on me that having twin babies must have been really hard, which is something I rarely stop to acknowledge. If I’d thought about how tough it was at the time, I could have quickly become overwhelmed and depressed. Lucky for me, I did not have the luxury of time to feel sorry for myself. I had two giggling, wiggling babies who needed me to put my hair up in a ponytail on top of my head and scurry around on my hands and knees, barking and sniffing, in a game we called Fluppy Dog. I had forgotten all about Fluppy Dog until I saw those videos.

The unexpected thing that dawned on me was that those videos were from the ‘Before Time.’ They were made about two months before we knew we were looking at a diagnosis of Cerebral Palsy for Roo, and long before we knew anything about Autism. Like most people, Autism was just an abstract concept to us. It was this thief-in-the-night type thing that went around snatching little boys, turning them into all-rock, no-talk hollow shells of children with crucial pieces missing from their puzzling lives, while their devastated parents could only hunt for a cause and a cure for this ‘disease.’ We were essentially ignorant of all things Autistic, save for the few half-truths and misguided metaphors we’d picked up from the odd bits of media coverage. Autism was not something we had to think or worry about back then. Which is probably a good thing since we already had our hands and minds full. But almost immediately, I felt a pang of envy watching that younger, more naive me playing and singing with my babies. I was gloriously unaware that raising those babies would be complicated by the many bumps and detours in Autism Land. Carefree compared to the me of today. Seeing the bliss in my own past ignorance made tears well up in my eyes.

Then, as I watched these little vignettes of Neener and Roo at seven months old, I couldn’t help but look for signs that might have hinted at the road ahead. Especially since doctors and researchers now think they can spot early indicators of autism by six months of age. Of course, there were many things that we, and the many doctors we dealt with, missed along the way. But they only seem obvious in retrospect. Roo lagged a bit in her gross and fine motor skills. And she had some quirks: A serious aversion to certain sounds, and any kind of talking toys; spells of staring off into space; selective hearing and odd eye contact; no fear of unfamiliar faces or places. And even as a baby, there was always something different about her vocalizations, her cooing, and her speech development, compared to Neener’s. Something I could never quite put my finger on, and ultimately didn’t worry about because all the professionals I spoke to and the books I consulted told me not to. From the time she was two months old, Roo was on medication for grand-mal seizures, so much of her odd behaviour was chalked up to her daily dose of phenobarbital. And she never exhibited any of those big red flags that the handy little autism awareness checklists and pamphlets in the paediatrician’s office tell you to look for. Those same handy checklists and pamphlets also happened to lead my cousin to spend a few thousand dollars in speech therapy, and many nights in worried tears over the development of her very un-autistic son. Meanwhile, my actually-autistic daughter slipped beneath the radar for years because no one knew or thought to look beyond the narrow parameters of a checklist, and the even narrower assumptions of how an autistic child looks and acts.

I also wondered if we would have done anything differently if we’d known about Roo’s autism when she was a baby. Probably. Would it have been better for her and for us? Maybe not. As much as I understand the benefit and logic of early intervention, I think for us, there could have been such a thing as too-early intervention. Knowing too much too soon could have quickly and permanently tipped my careful balance between stress and bliss too far in the wrong direction. Granted, I do wish we’d realized it was autism we were dealing with – and not just a defiant, disobedient child – a little earlier than we did. I might have been more patient and more understanding with Roo in those million little moments when it just seemed like she was being a spoiled brat, and trying to push my buttons. But then again, if we’d known any sooner, it might have influenced our decision to have another baby. I was almost two months pregnant with Squiggles when we got the first official inkling that Roo was autistic, and the actual diagnosis came a week before Squiggles was born. I can’t say for sure that we’d have done things very differently, but I tend to believe that the Universe unfolds as it does, when it does, for a reason. At least, my Universe does.

Even though it’s been a while since I’ve written a postcard from Autism Land, my regular posts – not to mention the day-to-day life of the Blister family – always have the threads of life on the autism spectrum woven throughout. Sometimes it’s stuff we can laugh at. Like the immense and loudly expressed joy Mr. and I felt when Roo was able to restrain herself from eating old stepped-on french fries from the floor of MacDonalds after only three verbal warnings. God, that was a great day! And other times, it’s anything but funny. The busyness of the last few weeks, and the sheer effort Roo makes just to hold herself together in so many contexts, has been catching up with us lately. We’ve had to extinguish multiple meltdowns, try to decipher many bouts of frustrated echolalia, and be vigilant in looking out for her safety when she has trouble doing it for herself. It is clear that even though we’ve moved half way across the country, we are still passport carrying citizens of Autism Land, just as we were back when those videos were made. Even though we didn’t know it then.

I still don’t have the luxury of time to dwell on the difficulties of our circumstances, or to sit around feeling sorry for myself or for Roo. She’s the same smiling, laughing, loving child she was in those videos, just older and a little more complicated. I’m older and perhaps more complicated too. But I’m also wiser. Wise enough to be glad that I didn’t know then what I know now. Wise enough to trust that my Universe has unfolded as it should. And wise enough to know when it’s time to stop analyzing old home movies, put Autism Land to the back of my mind, and go play a little game called Fluppy Dog with my three beautiful giggling, wiggling little girls.

Advertisements

Actions

Information

8 responses

14 07 2008
Lisa

Amy, once again you amaze me with your wonderful writing skills. I can’t imagine how hard it must be to be a SAHM…WAHM…with three kids. You’re so honest and poetic. Thanks for a good read and keep your chin up.

14 07 2008
Winston

Yeah, and once the Universe unfolds, you can never get the darn thing folded back up again.

14 07 2008
Anika

Good for you, Amy. Be happy for what you’ve had and what you’ve got and consider yourself the luckiest person in the world. Because you are. I am too. Other people pity what life has brought me, but I disagree– wouldn’t trade lives with them for anything.

15 07 2008
nanny

You’ll love her forever. You’ll love her for always and no matter what happens , your baby she’ll be.
My baby boy brought me that book “I’ll Love you Forever” and I have never been able to read it aloud, but it has served me very well when I needed to communicate with him at times when communication was nigh on impossible.
Remember those squiggling giggling girls are much more than what you see. They are most of the smiles you have experienced since their birth. And no matter what happens their mommy you’ll be.

16 07 2008
Darlene Lappin

Don’t worry they will tekk you all the mistekes you made by the age of 9 or10.

Guess what don’t worry , you will only have made about 100000000000. Love darlene Darlene Lappin.

20 07 2008
Parenting meltdowns and.. twins « blue milk

[…] that some parents have got it so much harder. And speaking of having it harder, here is Domestic Blister talking about that first year, only with twins, and autism, to […]

20 07 2008
armagny

Almost made this dad cry. I’m glad i’ve got blue milk to direct me to the best parenting posts on the planet…

20 07 2008
domesticblister

Thank you for your comments everyone.
And Winston, I recommend the springy universes that just pop out of the package and can be crumpled back in fairly easily! I think they sell them at Shoppers…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s




%d bloggers like this: