Wednesday, October 24, 2012

Harder Than You Think




This post is about the R word... No, not that one, Regression.

Regression is a normal part of any rehabilitation process. We've all heard the old saying of two steps forward one step back, and in no place is it more apropos. My son hit a major regression this summer that extended dangerously long into his first grade year at school.

When Kindergarten ended, he was a superstar. Our annual IEP happens to be near the end of the school year and leaving the annual last year none of us could have been prouder. I remember a feeling of triumph, accomplishment and pride when the school psychologist announced to us that she felt Jack might not need his aide next year. We had no behavior goals in the new IEP. Let me write that one more time. We had no behavior goals in our new IEP.

We had done it. We had beaten autism. My son was going to be "normal" by first grade. Screw all those people that said it couldn't be done. Screw all those people that had "misdiagnosed" him. My wife, myself, and mostly my son had put in the necessary hard work to overcome this so-called disorder.

And then the regression started.

It was gradual over the summer. He went to summer school. He went on vacation for a week. He went to a day-camp at a special needs school. Behaviors getting progressively worse and worse. Mastered skills slowly slipping away. Stims becoming more and more physical, more and more aggressive, and, quite frankly, more and more alarming.

By the time first grade had started, we were back to where we were at the beginning of Kinder. Jack was removed from his General Ed class daily because of behaviors, or disruptions, or aggression. All the "experts" gave us the usual answers. "It's a tough transition", "First Grade is more demanding", "It's just a phase". But they were the same people he knew in Kinder. They were secretly as confused as we were.

Then rock bottom came. I got called to pick up Jack from school... again. This was becoming commonplace. This time, however, his aggressive outbursts had sent his BIA (one-on-one aide) to the hospital. I'm using hyperbole for effect here. She was fine and it was incidental contact that lead to the injury, but the fact remained the same. I was called to the principals office to take him home... again.

It was in that final meeting I said the words I regret the most. I am embarrassed to admit it, but I looked in my son's eyes and said "Jack. You are embarrassing yourself. I know you are capable of so much more"

I had done it. I had publicly blamed my son for his actions. I was the one who had publicly shamed him. I was the one who forced him to wear that scarlet A on his chest. It was me, his biggest champion, that had expressed my disappointment.

And we went home... silently judging each other.

I feared CDD (Heller's syndrome). I thought we were losing him for good. I thought I may have only had a few weeks left with him here. I remember later that evening, staring into his eyes while he stimmed through flipping the pages of a picture book, thinking he was gone. The sound of David Bowie singing "Can you hear me Major Tom?" playing over and over in my head.

And I cried. For me. For my wife. For his sister. For my sweet, sweet boy.

He came around. School started to get better. He started to spend more time in the class... "accessing the learning environment". The aggression died down. The behavior improved. The skills slowly returned.

My friends, it never ends. Parenting never ends. To quote a favorite movie "you never cross the goal line and get to spike the football".

My wife saved me. She was the one that came in and took over. She decided she was goiong to right the ship and stay the course. Our in-home ABA therapist saved me. She didn't panic. She stuck to the plan, not only for Jack, but for me, too. The school saved him. They didn't give up, when they easily could have. I am eternally grateful to all of them.

If regression is a bitch, then disappointment is her sister. You might flirt with her, but you don't want anyone to know.

Lean on those around you. Take advantage of that friend that is trying to lend a hand. Tell your spouse how you feel. Tell your doctors that you're scared. Allow yourself to be sad. Stay the course with what you've chosen. Admit you are human. Admit you are fallible.

Above all else, don't forget to love and never, ever, give up hope.

None of us are in this alone.

Sometimes parenting is harder than you think.

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