Wednesday, March 28, 2012

Special? I don't think so.

This subject has been bubbling around in my head off and on for a decade, sometimes with anguish, sometimes with frustration, sometimes with a snort and an eye roll.  I've siphoned it off a few times in the past, but I think it may be time to let it out.
  • "God gives special children to special parents."
  • "It's good he has you for a mom.  I couldn't do it."
  • "You're his best advocate."
No, no, and no.  Words like these, though meant to comfort, hurt.  Parenting any child brings fabulous joy and inexpressible love.  Parenting a child with an autism spectrum disorder adds exhaustion, frustration, confusion, consumption of all resources, and, often, denial of the self.  The fight for services -- educational, therapeutic, recreational -- is overwhelming.  The need to fight for services is unconscionable and pervasive.  (Truly, I've never heard anyone say that her child got what he needed automatically, the first time around.)

Parenting a child with an ASD means having to become a specialist in ASDs, OT, PT Speech, the insurance system (including "creative" diagnostic coding), federal, state, and local special education laws, the school system, medications, myth busting, alternative therapies, allergies, data collection, urine collection...  Parenting a child with an ASD means having to become a specialist in these areas NOW.  Not tomorrow.  Not when you have time.  Not when it's convenient.  And certainly not when someone hands you a manual.

Parenting a child with an ASD means being on call 24 hours a day.  It means daily, weekly, monthly appointments with doctors, therapists, school teams.  It means public and private meltdowns.  It means celebrating every little accomplishment as if it were a major step because indeed, for our children, it is one.  It often means the loss of friendships, family ties, and dreams.  It means daily stress to levels many parents experience only a few times a year.

I don't prefer to think that God wants me to be exhausted, frustrated, confused, depleted, or denied.  I don't believe I have a talent for caring for my child more than other people care for theirs.  And there are times that I resent having to fight against the prejudices, against the systems, against cavalier attitudes.  There are times that I resent the drains on time, money, family.

I feel fabulous joy and inexpressible love.  I am thrilled by and grateful for every step forward my son has made in the past 14-plus years.  I don't bask in the "specialness" of parenting a child with autism.

To save for another day:
  • "He'll eat it if he's hungry enough."
  • "Let me have him for a couple of weeks.  He'll straighten up and fly right."
  • "Was it something you did while you were pregnant?"


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