Ode to Special Parents

How many parents are their child’s legs when they
can’t walk, their voice when they can’t speak, their
ears when they can’t listen, their hands when they
can’t write, their eyes when they can’t read, their
best friend when they have no friends, their shield
when they have no defense, and see the best in them
when others only see the worse?

How many parents in a heart beat, have repeatedly
placed themselves in harms way?  Ignoring their
child’s yelling and screaming (which leaves their ears
ringing), the spitting, the kicking, the hitting, the
scratching and biting (which draws their own blood). 
Parents who frantically tried to restrain their child,
while desperately trying to protect their child’s head
by sacrificing their own body.  Parents who faced the
horror of their child’s self-destructive suicidal rage
cycle that left both child and parent crumpled in a
heap on the floor, physically exhausted and
emotionally devastated.  Time healed the physical
wounds, but the emotional scars stay with you forever.

How many parents, in order to just survive, learned
enough about medications to work in a pharmacy,
learned enough about psychiatry to work in a clinic,
learned enough about educational law to be a law
office paralegal, and learned enough about school
district policy to be on the school board?

How many parents have been called so often by the
school to come pickup their child that they are now
sensitized whenever the phone rings in the middle of
the day?  Between the first ring and when they pickup 
the receiver, dozens of scenarios run through their 
heads about what has gone wrong.  Ironically the call
may not even be from the school.

How many parents learn not all schools are created
equal?  Some schools that focus on test scores with an
inflexible "one size fits all" and "drill and kill"
approach may not be an appropriate fit.  Schools where
the kids, teachers, and administration show
compassion, understanding, and flexibility maybe just
the environment where their child can thrive.

How many parents have not been able to find an
appropriate school and thus have put their own lives
and careers on hold, or even sacrificed them, in order
to provide their child with an enriching and
supportive home environment free from abuse?

How many parents have the tremendous courage to allow
their child to fail, going against every instinct,
against every fiber of their being, in order to
demonstrate their child will be left behind if
appropriate school accommodations and services are not
provided?

How many parents can give and give and give and give
even more, and yet, never receive anything in return
because their child lives in their own little
egocentric isolated world?

How many parents suffered the unbelievable cruelty of
comments from friends and family about the poor
behavior of their child or their poor parenting
skills, when these well meaning friends and family
don’t really understand what it takes to parent a
special needs child?  Comments that felt like a hot
poker just pierced their already battered and abused
heart and self-esteem.

How many parents found the inner strength to pull
themselves out of the deepest, darkest hole of
frustration, depression, and loss, in order to fight
another day, because the light leading the way for a
better future may flicker and dim, but refuses to die?

How many parents experienced the heartache of seeing
their child struggle tying their shoelaces and a
minute later be totally baffled and awed when the same
child comments; the question isn’t if the chicken or
egg came first, but the plant or the seed?  Or have
kids who spend most of their time in resource rooms,
special day classes, or sitting in the principal’s
office and still score 99% across the board on
standardized tests?

How many parents
have the pleasure of working side by
side with remarkable teachers and administrators who
fight the same fight as you do, who do it for the love
of the job, but are faced with a fixed budget, or
worse yet a shrinking budget, while the population of
special needs kids continues to grow and grow?

How many parents
experience the knowledge, caring, and
loving found within local and cyber support groups
where information is freely shared, where mutual
respect is never questioned, where fellow members will
come to your defense with the passion of a 'mother
bear," where you can turn to when it appears all hope
is lost, and where you were made to laugh when you so
desperately wanted to cry?

How many parents
have felt their body shutter and a
chill run up their spine, their throat tighten
constricting their voice, their heart boom in their
chest as if it would explode, and tears well up in
their eyes, blinding them as they experience the
bittersweet agony and ecstasy of seeing their child
experience the little things that come so naturally to
other kids, but are truly miraculous for our kids? 
Such experiences as the first steps (when the child
has no legs or lost their use), first words (when a
child’s mind is trapped in an Autistic world), first
story read (when dyslexia makes words constantly move
and change), first paper (when dysgraphia makes
forming letters painful, slow, and individually),
first play date that felt safe (when previously
"friends" only teased, bullied, or physically abused),
and the first unscripted " I love you" come from
their child.

How many parents
have learned anyone can love a child
who's perfect, somebody who does everything right? 
But that doesn't stretch your soul.  Your soul only
gets stretched when you can still love somebody after
they hurt you. [Susan Phillips]

How many parents
truly understand the pain it caused,
the cost incurred, the heroic efforts it took, and at
the same time, the joy it brought to unconditionally
love their special child and demonstrate that love
through actions, not just words, in the past, during
the present, and forever in the future?

How many parents
learned the painful lesson?  One 
voice will not be heard, two voices may get their 
attention, but only the voice of many will enact 
change.  The voice whose message will be heard loud
and clear. The voice whose wishes will not be denied!
So take my hand and join me on this greatest of all
journeys and I promise, TOGETHER WE WILL MAKE A
DIFFERENCE!

Finally, how many parents
have been applauded for
their parenting skills, their efforts, their strength,
their courage, and their dedication; the best humanity
has to offer?

[Author’s note: this is where I begin to clap]


by Dave November 12, 2002
Grieving the Loss of the Dream