Erik Quinn: The Heart of a Family: Paper Jockey

Saturday, August 18, 2007

Paper Jockey

Glancing at the white parent notebook we were provided by early intervention around the time Erik was diagnosed, I noticed for the first time that it looks suspiciously as if it is pregnant. Its metal binder is now bulging with all sorts of papery goodness. Honestly, I had no idea how much paperwork having a child with special needs would generate. I am quite positive that our family is solely responsible for the destruction of thousands of acres of trees used to manufacture the tomes necessary to keep us informed, updated, and instructed on how to best care for our son. Our kid automatically came with a manual, a newsletter, fundraisers, feeding instructions, and physical/speech/occupational therapy instructions. I collect paperwork on each individualized family service plan (IFSP) and save every newspaper article that relates to WS in any way. I previously shook my head in disbelief upon hearing stories concerning elderly eccentrics who were crushed to death under stacks of newspapers in their cluttered apartments, undiscovered for weeks. I can quite honestly understand how that might occur now. I have only been at this a year and change, and my stack grows daily. Months ago, I cleaned out Erik's closet shelf, which housed all of the books and paperwork we were provided at the hospital pre-diagnosis, as none of it seemed to apply to our family and triggered depression in me, and I sent it all to a speedy execution in our rusty burn barrel. In its place are stacks of books on special needs, developmental delays, speech, fine and gross motor skills, bilateral brain half stimulation, and Williams syndrome. I am now a freaking walking library of information, and I have only gone through half of it all. I failed to mention our growing video collection. Our den has several copies of A Very Special Brain and Growing Up Different, which I occasionally lend to curious friends and family. This doesn't include the bottom drawer of my desk in which there are reams of insurance documents. We receive them weekly relating to doctors' visits and our weekly physical therapy sessions. If I don't keep up with them, the ominous stack of white envelopes with the glossy windows accumulates by the phone and eventually spills over onto the kitchen desk.

I guess my point is that it is quite possible to feel utterly overwhelmed by the waves of incoming paperwork, be crushed by it, and lie undiscovered for weeks underneath it all. Most of my collection is put away on the top shelf, behind a closet door, or in a closed drawer so it isn't staring me in the face 24 hours a day. It is overwhelming at times. Our next IFSP is scheduled for September 10th. In addition, I will be attending a class entitled The IEP Dance, Learning the Steps this week, where I will likely collect more reams of paperwork instructing me how to successfully complete yet more paperwork as we begin our interaction with the school system. Personally, from what I understand, I would call it less of a dance and more of a fist fight. I already feel a little anxiety percolating in my stomach about this, but we have a couple full years to prepare for it all. I just have to remember that it's okay to feel a little nervous and overwhelmed (who wouldn't?) as long as I can close the drawer on it all occasionally and wrestle with my son, tickling him until the choppy, high-pitched giggles come pouring from him. You may remember me mentioning that little log cabin with the red and white gingham curtains in my daydreams where Erik and I used to go to escape the therapists and doctors at the beginning of this journey. Although the place is mostly shuttered and a little musty now, we still go there occasionally to bake banana nut muffins and lie on the braided rug in front of the fire. In those daydreams, I never once had the desire to open the curtains to discover what was outside. This particular daydream was an essential part of my survival in those early months. If there's one thing I have learned, it's okay to keep the curtains closed from time to time. Besides, I suspect if I had yanked them open to see what was behind them, I would have likely seen giant snowdrifts of paperwork.

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2 Comments:

Blogger Rosemarie said...

I hate paperwork and no matter what stage in life or needs it comes with and without invitation.

I try to keep a minimum, but I do have pile to file in my office that I have now moved to a bookshelf so it's out of sight.

You're right on target! You and Erik in front of the fire is an intimate time of exchange, not peering out of those curtains no matter how tempting. Enjoy every precious moment with him, even in your daydreams!

1:14 PM  
Blogger LZ Blogger said...

Even a MILLION trees does not compare to the life of ONE SPECIAL CHILD! ~ jb///

7:44 PM  

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