In my inaugural post for this column, I think it’s important to first tackle the definition of “recovery”. What recovery looks like for one person may not be what it looks like to another. Can we all be right? Is there a definition?
Honestly, I don’t know if I ever sat down and defined what recovery meant for us, but I will say, I definitely knew what it didn’t look like: what we were living at the time. I think I initially thought of it in terms of what would be absent from our lives, not necessarily what would be present.
For example, not if, but when we recovered, I would think, I could finally clean off the biomed counter and clean out the biomed cabinet. The liquid supplements taking up a full lower cabinet and the solid supplements taking up a full upper one would be a thing of the past. I could open the door for a bandage perhaps, and not be overpowered by the smell of vitamins or get smacked in the head by a falling bottle of enzymes.
And the cooler we kept in the back of the van for those emergency food times, I would imagine…packed with gluten-casein-sugar-soy-dye-and-taste free foods…could go back on the garage shelf. (This was 2005, people. Dietary pickings were slim.)
Oh, and yes, I would gleefully think, I would no longer spend another weekend getting up every 3 to 4 hours around the clock. After about 100 of those, I was growing weary.
And there was more. The spreadsheet for morning, afternoon, and bedtime diet and supplements could be filed away forever. The prescription antibiotics for ear infection after ear infection would cease. The binder of medical EOBs and bills would get stashed away forever in the autism closet. In fact, there would be no more autism closet! (Do you have one of those?)
The patches of eczema in her elbow and knee creases would disappear. The intense examination of every bowel movement could end. Interviews for therapists and tutors would stop. Oh yes, I would imagine, it would be the absence of all of this!
But now that I think about it, I did also imagine what would be present in our life. Her voice. Her thoughts. Her personality. Her hopes. Her dreams. I remember sobbing one time when I realized I had no idea what she really liked. Someone asked me what she wanted for Christmas, and all I could honestly reply was, “I don’t know.”
I really didn’t know. What was her favorite toy? Did she like the clothes I picked out for her? How did she want her hair? What was her favorite song? I would know, I would think. When she recovered, I would finally know.
Most of all, I just knew how it would feel. Just like I instinctually knew when something was wrong, I would know when we were out of the woods. I would finally be able to breathe again.
Eventually, (as it became safer and safer to do so) however, in more clinical terms, I thought of recovery in the more measurable academic and medical realms.
Academically, for example, she would be mainstreamed without an aide, and preferably completely out of special education without any services of any kind.
Medically, I would think, she would lose the qualification for a diagnosis anywhere on the spectrum. And most important, there would be an end to the chronic illnesses and suffering that had gone on for so long.
Socially, there would be a recovery too. There would be friends and phone calls and sleepovers and birthday parties…and not the mercy invite kind. There would be backyard games of tag and neighborhood ball games and long bike rides around the block. She would fight with her sister and even smart off one day. Gosh, she just may even tell a lie.
It was all of this: that which would be absent from our lives and that which would be present. That which could be measured and that which could not. And incredibly, almost all of it is now exactly as I imagined, with the exception of some social dreams still not yet fulfilled, and some academic ones too. But gosh darn it; we’re getting there. We’ll never give up trying.
So that’s how I define it. Moving forward as I write about recovery and all that it entails, this will be from the perspective I’m writing.
But what about you? How do you define recovery? And if we’re going to use that term, should we have a single definition? Is it simply the absence of meeting the diagnosis? Should this be something our doctors are looking at in medical terms, not just behavioral ones? Do you believe there are degrees of recovery? Is it all or nothing for you?
Please, chime in with your ideas. I’d love to know what you think. Recovery is a discussion well worth having.
Julie Obradovic is a Contributing Editor to Age of Autism.