Tricks of the (Special Needs) Trade

Last week I collectively spent three hours on the phone with the office of Charlie’s geneticist. It was over the space of four phone calls with an average hold time of twenty minutes each. This gave me plenty of time to think.

It was a snafu on their part that caused the time suckage. Someone on their end forgot to schedule the quarterly ultrasounds. Therefore, we had an appointment with the doctor…and nothing to talk about. Rather than eat up the deductible for what would turn into an expensive meet-and-greet in a sterile environment, I cancelled the appointment. Silly me.

Now the phone was ringing off the hook. Now EVERYBODY wanted to talk to me. Now they were my number #1 fan or I was on Mommy’s Most Wanted list. How could I cancel? How could I not know how important these checkups were? What do you mean you haven’t had the ultrasounds? The five different people I spoke with could not follow the trail all the way back to the beginning where the lapse in the medical attention span began.

Rather than take the guilt that was so generously offered me, I came up with a list. A list of things that make me a master of my trade as a special needs mom.

 

TRICKS OF THE TRADE AND MISTRESS OF MY DOMAIN:

  1. I can sweet talk the neurologist into ordering the anti-seizure meds with grape flavor already added to save me $2.99 at the drugstore.
  2. I always schedule appointments so they land in December rather than January when the deductible rolls over.
  3. I black market swap equipment with other special needs moms (which is how Charlie got his current gait trainer).
  4. I borrow equipment from his school to try out (which is how he got his first wheelchair).
  5. I know how to wash a compression suit (to help him sit up straight) so that it doesn’t shrink to the size of a glove.
  6. In my pantry and fridge I stock every easy to chew, high energy food that a kid could want: yogurt, peanut butter, bananas, oatmeal, blueberry pancakes, mashed potatoes, hummus, cheese.
  7. I know which appointments are mandatory (ultrasounds, pediatrician, nephrology) and those that have wiggle room (ophthalmology and developmental clinic)
  8. I request the specialists from the children’s hospital who also practice near our home, thus reducing travel time from one hour to ten minutes.
  9. Super Glue and I are best friends when it comes to quick fixes for leg braces.
  10. I have diagrammed the exact circumference of the spot on Charlie’s bed where the pee pad needs to be strategically placed.
  11. I know when to send an email over a picking up the phone (with the exception of last week’s marathon call-fest).
  12. I know which doctors will see us on time (pediatrician, ENT, ophthalmology, neurology) and who will forget we exist while we wither in the waiting room (genetics, nephrology).
  13. I am in possession of the master appointment bag: snacks tiny enough to take forever to consume (Puffs, Goldfish, Cheerios, raisins) and entertainment (VTech toys and fully charged iPhone with YouTube video access).
  14. I’ve six-sensed the exact configuration of wheelchair handles so that it fits in the van.
  15. Lastly, I have (recently) learned when to hang up during call-waiting. They know where to find me.

Cheers to all you special needs parents out there for learning the tricks of your trade. You rule your roost. Don’t let the man get you down.

 

Tell me again why we have to go to the doctor, mom?

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