Friday, July 11, 2008

When did you first notice...?

Autism takes so many forms, so many paths. (Perhaps you've heard the phrase "if you've met one person with autism... you've met ONE person with autism.")

Each family has a different answer to the question "When did you first notice that something was unusual about your child?" That question came up repeatedly as we went down the path of seeking a comprehensive diagnosis for Joy.

So here's my answer:

We had two big measuring sticks for Joy's development. The first was her older sister Rose, born 28 months earlier. The second was Joy's daycare buddy, a little guy just two days older. Our families did a daycare swap for the first two years of their lives, so she had an exact age-mate who was always there.

Physically, Joy did some things before her daycare buddy, such as rolling over and crawling (and maybe walking too, if I'm remembering right). Those were all things she did at an earlier age than her sister too.

On the other hand, her sister was a verbal whiz, with 75 words by 14 months. Joy wasn't doing that. She seemed to have some babble, and I kept trying to count words, but they just weren't coming. Plus I'd think I was hearing a word, write it down, and then it would disappear. Elvis sightings! but we didn't know it then. Her daycare buddy wasn't as verbally precocious as her sister, but he eventually started to pull ahead with words too.

Those weren't immediately definitive, though. After all, there's a wide range of normal, and we kept reminding ourselves that comparisons can be less than helpful.

The first unmistakable red flag was a certain CD-player toy that we brought out at the age of about 10 months. If you pushed the yellow button on top, the "CD" would spin, colored lights would flash, a song would play. Then there was also a little noise-making barrel to spin, and a couple of noise-making buttons to push.

All Joy wanted to do was spin that barrel. She had a toy in her crib with a similar barrel, which in that case was the correct trigger to light the lights and play the music. But the CD toy required the push of the yellow button.

We showed it to her daycare buddy, and he "got it" right away. Showed it to him once, he was making it go again and again. Joy, on the other hand, took two weeks to get the idea, full of demonstration and hand-over-hand.

Another memory that really sticks out for me was some time later, age 18 months maybe, when we were embarking on early childhood Birth-to-Three evaluation. I commented to the first caseworker that when Joy and her sister and her buddy were at our front window, and I'd be pointing out something like a squirrel or rabbit, Rose and daycare buddy would take an interested look and Joy generally would not. I remember a bit of self-deprecation as I said that, qualifying it with a "maybe I'm imagining things-- might not be important anyway."

I wasn't imagining things, and it's important.


AuntieS said...

I first noticed that something was unusual with my little niece Joy when you all were at my house for the holidays when she was about 1 1/2 years old. Joy spent the whole time obsessively running from one end of my house to the other, touching and grabbing and knocking over and putting into her mouth, everything she could get her hands on. You both spent the whole time, as did everyone else in our family, chasing Joy and trying to second-guess where she would head next, as well as cleaning up the messes she left behind. Of course, Joy was adorable and sweet, but I remember thinking that this seemed unusual behavior for her age, that it seemed too much or too obsessive. I also felt so bad for you parents because you seemed so exhausted and overwhelmed that night.
My second "aha" moment with little Joy was when I brought her birthday gifts that included the tunnel. She was able to follow a simple direction such as "Go in this end of the tunnel." or "Come out now." She also seemed amused if I would play "peek-a-boo" by looking in one end. Joy did enjoy this, and it was a nice visit. But, I remember remarking to a friend later that it was odd that she never seemed to make eye contact with me, as if she had autistic tendencies. It was just an observation and thought in my mind that I didn't go any further with. Not too long after that, Joy received her diagnosis of being on the autism spectrum. ("Aha!" I thought, "that does explain things!")
Despite all of this, I do have to say that I adore Joy and her big sister, and I loved the hugs that I got from Joy the last time I came to visit. I wish we lived closer so that I could be more helpful, but I look forward to the times we do get together.

JoyDad said...

Not that we don't still have challenges, but thankfully Joy is somewhat easier to take to visit the relatives than she used to be. I'm glad your house survived, AuntieS!

I remember before she was diagnosed, Joy would sometimes wave her hand in front of her face while I was rocking her to sleep. I remember thinking that it looked like the motions I'd seen from a couple of the kids at church who had been I knew had been diagnosed with autism. But we never did connect the dots...

Saja said...

Our youngest, now 17 months, is the last of four, and we are noticing that his development is a little different from that of his older two siblings. (Our eldest was diagnosed at twelve with Asperger's syndrome, but we didn't notice anything unusual about her babyhood development, because she was our first, and it wasn't THAT odd.) In particular, his verbal development is much like you describe Joy's. All three of the older kids slowly (or quickly) added new words to a steady repertoire. The toddler, however, has a very small vocabulary, and it's always changing, because the words he learns disappear days to weeks later. And he's having the darnedest time learning many words--he just this week started saying Mama and Papa, but he doesn't label US with them. Before that, it was Baba - B is an easy letter for him - and that was for all people.

I'll be curious to see if this is just a different flavor of verbal development, or a harbinger of spectrumishness to come.