Charlie PilotTM (#332)

If these are what some call The Ten Commandments for Parents of Handicapped Children (and yes, I do not care for the h-word), a central tenet of life in Autismland would seem to be

It will not be easy.
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Sorting through closets and my extremely though not hopelessly cluttered dining-room-table-of-a-desk and preparing to pack up our worldly possessions (though we plan to leave behind the blue and white striped couch that has become, well, battered) are all part of the business of moving a household. Since Charlie’s first home in Kirkwood, Missouri, we have moved five times and packing shelves of books and toys into boxes is pretty routine.

What, according to the above-mentioned Tenet of Autismland, “will not be easy,” is getting Charlie set up in his new school.

I have observed Charlie’s new classroom and had good conversations with his teacher-to-be, Child Study Team personnel, and the school nurse. And now, the paperwork, and–Charlie being nine now and being in his seventh or eighth or ninth classroom (depending on how you count them) and beein a patient in seven different pediatricians’ practicses–there are not only stacks of IEPs, evaluations, test results, correspondence, progress reports, data sheets, informational handouts, medical forms, etc., etc., etc., as well as copies of all of the above in various quantities crammed into manila folders and envelopes and two-pocket folders with rubber bands and paper clips—–

No one’s going to be dining on this dining room table soon.

I need a Charlie PilotTM. Imagine if such a hand-held device were issued at the time of, say, diagnosis, with separate buttons for Medical, Education, Speech Therapy, Occupational Therapy, Behaviors, Immunizations, Medications……. (One would, of course, want a [child’s name] PilotTM that could be individualized according to each child’s needs, just as one’s child’s IEP is supposed to be an Individualized Education Plan.)

And, lest I forget, my Charlie PilotTM would have a special button for What Charlie Says. Today I would keyboard in him asking his ABA therapist “Sara, help me!” so she would blow up a beach ball for him—-that beach ball being a sign of summer and the beach and the ocean being just around the corner.

“It will not be easy”–just to hear Charlie say “help me!”–but, let another tenet of life in Autismland be

It will happen, and it will be good.

That will be the message programmed to appear on the Charlie PilotTM opening screen.


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Comments
3 Responses to “Charlie PilotTM (#332)”
  1. ebohlman says:

    Quite seriously, your idea of a CharliePilot is actually achievable. Somebody (I’m not yet volunteering, but I’m keeping the concept in mind) ought to be able to come up with some software that would help organize all the details that a parent of a child with developmental disabilities needs to keep track of in order to effectively advocate for him/her, as well as recording the details of his/her development that let you say “it really is worth it” when you start wondering if it is.

    You really ought to elaborate on what such a program would help you with; what could it do that would help you spend less time documenting Charlie and more time raising (or, for language purists, rearing) him?

  2. Vincent says:

    Your journey very much reminds me of ours; trying to find our place in this sometimes strange world. Katrina, a wise parent of an aut-child once told me, “Wherever You Go There You are” 🙂
    Perhaps the most important thing any of us parents can do is simply to look through our own eyes, see with eyes of wholeness, and act with integrity; Katrina, such as you do each day for Charilie.

    NeverSurrender!

  3. I am making a list in my head for what a “CharliePilot” might include. Even more than software, I (personally) could use a handheld device—a Treo? something iPodish–so I could keep the records with me and pull them up at doctor’s office, IEP meetings…..

    It has been quite a journey, Vincent—the road has gotten pretty rocky and muddy at times, but I do my best to follow Charlie’s footsteps.

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