Wednesday, April 15, 2009

Wondering When the World Changed

Some parents of autistic children seem so sure of the moment their child "became" Autistic. It was right after the MMR or the DTaP or a fever or seizure. . . They KNOW that nothing was the same after that incident. I have no such moment I can pinpoint. In recent months I had convinced myself that I could have detected his autism much sooner, possibly as early as 1 year old. Maya's incredibly social personality is such a contrast to what Sam's "mommy only" attitude was at her age. Her behavior had me convinced that something could have been detected sooner.

Earlier this afternoon I came across some photos of Sam when he was younger and all of these memories of the way he used to be came back to me. The first is a photo of Sam in his exersaucer as happy as can be. I remember when he used to play in it while I cooked and/or cleaned up in the kitchen. He would babble and bang around just happy to hang out with me.

The second is a photo of Sam in the cutest Hanna Anderson pajamas. He is probably 14 or 15 months in the picture. It made me remember the dancing game we would play in the kitchen when he was too big for the exersaucer. I would say "Sammy dance" and he would "dance" by running/hopping in place. Then he would stop and look at me. I would follow with "Mommy dance" and do a similar jig myself while he giggled. We would go back a forth a few times while pasta sauce or chicken simmered on the stove.

A third photo is one we used for Christmas cards whan Sam was about 19 months old. Sam is in his fleece one piece pajamas and sitting on a chair in the family room. He is beaming at the camera with one of the happiest grins you can imagine.

The final photo that prompted this reflection is a picture of Sam sitting on the stairs in khaki pants and a striking blue polo shirt. It was the day of our neighbor's son's first communion. Sam got right on the dance floor and bopped up and down nervously when we arrived at the party. In the picture he is looking right and the camera and smiling.

Looking at each of these photos I was suddenly hit but this feeling that he seemed so NORMAL at those times. He was not withdrawn, stimmy, or hyperactive at those times. While he may have shown signs of autism early on - not much pointing, difficulty waving/motor planning/imitation, running back and forth when he learned to run, slow verbal skills - he also did things to negate our concerns - sit on my lap for stories, snuggle, smile at other children, make his wants and needs known through nonverbal communication.

After 2 the signs became more apparent. I remember watching in horror as he lined up puzzle pieces in perfect arches across the carpet and tearing up as he stopped letting me read to him. As Sam grew from 2 to 3 his condition got worse. He started hand flapping, jumping, humming, bouncing on his bed for hours at night, losing the few words he had, chewing paper, and throwing everything in sight.

Looking at these pictures made me sad missing the little boy I thought I had but it also made me realize that I wasn't negligent missing his diagnosis in those first two years. There was so much he did that seemed "typical".

So when did the world change? I just don't know.


Kat said...

Wow. My experience with Max (who is turning 3 next week) is very similar. I even have a neurotypical daughter who is now making me question EVERYTHING when it comes to his development. Sigh. I look back at videos of Max and see symptoms of ASD from about 8 months on. But you are right, there was a lot of NT behaviour that made us hope that he was just a late talker and perhaps a bit odd. I try not to beat myself up about it, wishing we had pushed for a diagnosis earlier, but some days I really question myself.

Commander In Geek said...

We love Sam and Maya. Keep up the blogging so we can keep track of them. As the weather improves we hope to do more park outings with them.

I still love the time we were visiting and Sam just jumped into my lap to play. He really is a great kid and we hope for more progress in the future.

- Amitai and Rebecca

Alicia (aka Dr. Mom) said...

i can relate with this one, though with my daughter she went 'downhill' between 18 months and 2. i too have looked back at pictures and videos when she seemed so 'normal.' it was happening slowly, and insidiously. Hindsight is always 20-20, and sometimes youre totally blindsided. its such a huge spectrum too that its just hard to compare and contrast 'typical' to 'non-typical' behaviors and tease apart what is what.

Good luck with the DAN doctors/protocols!

Stranded said...

I don't know you but you just described my life right there.

Just this week I was thinking I am going to upload Khaleds old photos and videos.

I try not to think about what I lost becuase it is very upsetting. I try to think about now and the very tiny gains he is making. But you don't always have control over your mind. It wanders in to the what if and why.