"Special" Means Special NEEDS, too.

 

We say, “I want healthy,” when first we learn that we are pregnant.  We have children, thanks to the grace of God, children who are perfect in every way.  Once in a while, we have a special child who needs more than a normal child:  more care, more attention, more patience, more education, more money, more doctoring, more therapy, more energy.  The mores don’t stop at these.  We need understanding.  We need to feel hope.  We ask for respect.  

Unless you have a special child with special needs, you might not comprehend how difficult life is for families, friends, therapists, teachers and medical personnel.  Autism sends its tentacles into every aspect of life; the more symptoms and higher one’s location on the spectrum, the needier the child and family.  I want to say to the book reviewer who, after reading my book,called me an “asshole” that I had to count on my government for care for my son.  She ripped me to shreds for using the government, for over-protecting my son and for being an awful mother, in general.  I’d like to say to her now that special families HAVE to rely on the support of everyone and everything around us, or we will “go under.”

Nursery school at KenCrest, where Greg got the sensory integration therapy, the one on one attention and the care of dedicated, highly trained pre-K teachers, prepared us for our trip to Oregon to consult with experts in the field when Greg was five years old.  (We funded that trip ourselves.) The good old U. S. government funded our nursery school or Greg would not have received the therapy he needed.  In the 80s, to my knowledge, there were few specialized programs available to families to help children on the autism spectrum.  So I listened to my pediatric neurologist who recommended that I contact the Intermediate Unit (government-funded) and I learned to rely on others to teach me how to teach my son, to help us through the onset of OCD-like behaviors and to find a place for our son in this very confusing world.

From kindergarten to fourth grade, Greg needed no government intervention.  However, when Greg’s special education teacher realized that he needed more specialized intervention programs than school could offer to bring out the best in him, she advised us to seek therapeutic support services, again funded by the government.  This yo-yo back and forth between self-sufficiency and neediness has characterized our lives for the past 28 years of coping with our son’s condition.  It is what it is.  

I appreciate the kindness of others.  We once lost sight of Greg as our family talked together in a busy restaurant in Lancaster, Pennsylvania.  Greg had run outside.  When we found him, we discovered a family of strangers surrounding him, protecting him as if he were their own.  Other times, when we lost Greg or when he ran away, if not for the support of everyone around us, we might have met with tragedy.  It is truly impossible to watch a “runner” who is as fast as Greg.  Today, they put electronic bracelets on “elopers”.  Twenty years ago, the technology was not available to families.  We needed help.  We accepted help.  

And so, when I read about the family of an autistic teenager who was escorted from a plane in Salt Lake City this week, I got angry.  Really angry.  We’re not talking about a criminal.  A crew decided that a fifteen year old girl with autism was exhibiting disturbing behavior that made them uncomfortable, and they took an action that will be felt by this family forever.  

My husband and I have flown with Greg, and he has sometimes acted out.  The airlines’ respectful concern for our well-being as a family always ruled.  In Atlanta’s airport, about fifteen years ago, a bell-cap allowed my fully mobile son (who was losing his mind to get home to his dad) to sit in a wheel chair while the man pushed us to our plane.  Greg wasn’t going to get to that plane by departure time any other way.  Just last year, in Phoenix, an airline attendant saw Greg about to lose control due to a long wait in the sitting area, and she allowed us to board with first class.  She broke a rule to enable a family with a potential exploding cannon (Greg) to get on that plane where he would feel relief to be heading home.  Granted, we often decided not to fly with Greg over the years.  I missed both my mother-in-law and father-in-law’s funerals.  I’ve missed weddings.  I’ve missed so much over the years all because Jay and I felt we should not fly with Greg.

Today, however, we fly with our son.  He deserves the chance to see Disney World and the Grand Canyon.  He deserves that and so much more.  

Autism awareness is what has made the difference.  I recommend to other teachers to show John Quinones’ episode, “What Would You Do?”  He has done many such shows, but the scene in a New Jersey restaurant, where he staged a disturbance between a family with an autistic son and a man who was disturbed by the challenging behaviors of the son brings tears to my eyes every time I show it.  The clients in the restaurant showed that family tremendous respect and understanding.  I was proud of them for standing up for a special family.

I have respect lessons for my own students.  They learn not to say the “R” word, and they even sign pledges not to say it ever again as part of our reading lesson on Daniel Keyes’ famous work, “Flowers for Algernon.”  

I have watched the videotape of the police officers escorting that family off the plane.  I’m trying to be fair in my evaluation.  After all, no one interviewed the passengers surrounding the family during the daughter's near melt down.  I’m not even certain how severe the melt down was.  However, I’ve been on plane with screaming babies, and I showed the families of those babies concern and patience.  It’s what a compassionate society does with special situations.  We are not heathens.  We don’t put special children in fields to die like they did during the Middle Ages.  We no longer institutionalize our special citizens.  We show them respect.  Societies are judged by how they treat their special people.  Where was the respect that day?

 Greg and Trevor at bowling

Greg and Trevor at bowling

Greg's friends take care of him at Red Crown bowling.  Last summer, they talked him down from a bout of screaming when Jay and I missed a Saturday bowling league.  Greg is the one in red.