Saturday, April 2, 2011

Autism Speaks...and all of us need to answer the call!

Years ago, when the education job market was much like it is right now, I was given the opportunity to take the alternative route to teaching. At the time, I was disheartened. My job search had fizzled, and I was stuck working at a desk in an office instead of working with kids on the frontline. And that was when my dear friend Kim called and offered me my first teaching job.

Where I worked and what I did doesn't so much matter now. Well, it does, but that's for another day. What that job led to was another job, and that is the way it goes. I became the special education teacher on a birth to three team. Supported by a group of part time professionals, occupational and physical therapists, a speech pathologist, a school psychologist and my dear friend Susan, the audiologist, I visited 35 babies each month. My days were filled with home visits, tender moments with stressed moms and lots and lots of playtime with little wiggily, but beautiful babies on the floors of their many varied homes.

That first job that connected the dots to the baby program was working with hearing impaired preschoolers. I learned not only to sign, but how language emerged when circumstances were different for kids. With the babies, my learning curve continued, I studied language emergence in other ways and watched what happened when development did not follow the 'normal' learning curve. I saw little ones with seizure disorders, cerebal palsy, spina bifida, down's syndrome, and accumulated a multitude of memories that remain with me even today.

But when Autism Awareness Week rolls around every year, I think about a sweet little blonde-haired boy. His pale blue eyes were fixed on the stars, or so it seemed to me. I'd come visit twice a week, yet he wasn't really connected to me...or so I thought. But somewhere, somehow, we developed a kind of routine. He lived in a beautiful home, largely decorated in white with tile everywhere, or so it seemed to me. His mom, a very young and beautiful woman, was lonely and overwhelmed. Alex was a runner. His engine was going all the time. He never crawled...and from the time he was about nine months, he pulled himself up and was on the move all the time. He had no radar for danger, so she had to watch him constantly. Alex was a cranky baby, tactile defensive, which meant that strange textures like towels and rugs would set him off and make him cry uncontrollably. Certain foods offered problems for there were texture issues inside his mouth as well. Over time, I grew to love spending my time with Alex. Of all my babies, he was a bit older and would go off to preschool as soon as he was 2.8, for that was the law at the time. I learned to follow his lead and occasionally toss a few surprises his way. He began to notice me and eventually, he sat down and played. He put a little foothold on the ins and outs of my toys...we worked on 'cause and effect' and built a little language and social interplay too.

But the thing that I remember most was his mom, Julie...and just how overwhelmed she was, and how much she needed a break. In early visits, she was watchful and untrusting...certain I couldn't keep myself inside Alex's head, watching the horizon for him. Eventually though, she let go just a little bit--she let me take over so she could wash the dishes or even just sit and relax upstairs.

Later, Alex grew in his ability to stay with my toys...he loved when that bag came into the house. Of course, sometimes he'd take out all the toys and throw them all over the place. It gave his mom a few minutes to have an interaction with me. We'd talk and keep a steady gaze on him. Because...that was what she needed, and that was what was most important for me to learn. Autistic children make all of us earn our stripes, pay careful attention and cherish every milestone they make. Parents of autistic children need love and support--because their job is incredibly large! My hat goes off to all the many moms of autistic little ones out there today!

You, and all the parents of special needs babies, are the heroes in the parent world...you do earn your stripes with new and daunting challenges each and every day! And even though you may feel that you're living a much more prescripted, marginalized life? There are many of us who know...who care and who may not live in your shoes--but we keep you in our prayers each day.

2 comments:

  1. Gael, that is so loving. I'm going to share this with a friend of mine.

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  2. Thanks, Mary! Love the uniqueness of human kind...but I especially love those who live to support their children's uniqueness even more!

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