the "A" word

I need to tell this. I need to write this down, even if no other eyes see it or no one understands or empathizes with our story. As much as it hurts to see it in black and white, that amount of pain has been festering inside me for months, maybe years as we've came to accept, in a way, the way it is.
One way that I've been working on accepting our challenge in life is that it could be worse-way worse.

Our childcare provider came to me concerned when our daughter was almost 18 months old. She described things I had noticed, but hoped were in my head. Our girl's refusal to listen or mind, her dislike of other people, her strange eating and playing tendencies, her disinterest in toys and peers, her speech delays. Plus her amazing temper tantrums, unlike anything I had ever witnessed before. As an early childhood educator, I thought I was just over-reacting, you know, reading into normal behaviors something that wasn't there. Then I really started to watch and the more I saw, the more concerned I became. Our baby's preference to be left in the baby carseat instead of being held, her colicky behavior way past the stage of colic, her disinterest in watching me or her other caregivers all took on a sinister haze as I considered the "A" word.

"Don't worry about autism. She doesn't have it."

Her initial evaluators through the state early intervention services (aka "the professionals") told me. My mom told me the same. I couldn't wrap my mind around her test scores, which were way below the developmental delay cut-offs. Surely she wasn't that far behind already. Surely I would have noticed my baby failing. We did what we could-speech therapy, occupational therapy- and I pushed the "A" word to the back of my mind.
Fast forward 2 years. Not alot of progress, but I have adjusted my thinking. I have let go of my preconceived dreams of a perfect, normal child and am prepared now to embrace my daughter for whatever may come. I am determined to fight for her to the best of my abilities.
And, as most parents in this situation know, more testing follows. This time, the autism diagnosis comes to the forefront again. And I grieve again all over, but we do what has to be done. More testings and the official, pediatric neurologist diagnosis: pervasive developmental delay-not otherwise specified (PDD-NOS). And part of me rejoices because we learn some wonderful news: there's a good chance that she will be on level developmentally with her peers by age 8 or 9. And part of me grieves yet again because this is not something that she will be able to have a miracle cure for; she will struggle and cope with her sensory issues for the rest of her life.
And now, fast forward another 8 months. 8 months of intensive therapy, inclusion in a regular early childhood classroom, IEP goals, one-on-one at home. And 8 months of glorious progress! 8 months of little successes building on top of one another! My heart soars. Can I dare to hope that the worst is behind us? Or is this just a smooth part of the highway and any day we are going to need the 4 wheel-drive because-guess what?- we are going off road again?


I truly don't know.

But I know this. At a seminar this summer, a mother stood up and told our group that when autism came knocking, it knocked at the wrong door. Her family wasn't going down without a fight, dammit.
I second that.