Personal Stories

False Hope/Perseverance
The Fine Line Inbetween

By Judy Gruenfeld

 
As the mother of an Autistic son, who is now an adult, I have run the full gamut of emotions.  First, you get that uneasy feeling that something is not quite right.  You can't put your finger on it, but you know this child is not like others his age.  You dismiss the feeling, telling yourself that every child is different (and, indeed they are).  But way down, deep inside of you, the truth is festering and gives you no peace.

Then you think, Einstein didn't speak until he was four; Beethoven's music teacher told him that as a composer, he was hopeless; Thomas Edison's mother was told by several of his teachers that he was too stupid to learn anything; Walt Disney was fired by a newspaper editor who told him he didn't have any good ideas; Enrico Caruso's music teacher told him he had no voice at all; Louis Pasteur was rated as mediocre in chemistry; Abraham Lincoln entered the Black Hawk War as a captain and came out as a private; Louisa May Alcott was told by her editor that she could never write anything with popular appeal; Leo Tolstoy flunked out of college; and Winston Churchill failed sixth grade.
 
"So" you figure, "My child is in good company.  He must be a genius.  Besides, he is only two years old." But the festering continues so you discuss it with your husband.
 
"What?" he says, as his male ego takes over. "There is absolutely nothing wrong with my son!"
 
"He's my son, too" you respond. "Please don't be so defensive.  Maybe we should take him to a specialist."
 
"You're talking nonsense," your husband says as he stomps out of the room.
 
"Maybe he's right," you hope.  So you put it out of your mind.  But after a while the gnawing feeling in your gut re-surfaces.  So, you call your mother.
 
"Mom" you say, "Something's not quite right with the baby."
 
"What's the matter?" she asks.  "Is he sick?"
 
"No," you respond. "It's something else.  I think something is wrong.  He's not doing what other children his age are doing."
 
"Nonsense," says your mother. "His only problem is that he is too smart for his own good.  You mark my words, he'll grow up to be a doctor.  Besides, Einstein didn't speak until he was four."
 
So you hang up the phone but the gnawing feeling continues.
 
The next time you go to the pediatrician, you express your concerns.
 
"Frankly," says the doctor, "He would be fine if you didn't hover over him so much.  I think you need some help. "And then he hands you the name and phone number of a psychologist and suggests that you make an appointment to see him.
 
You walk out of the pediatrician's office fighting back the tears.  By the time you have the baby safely secured in his car seat, the floodgates open up.  It's obvious that there's either something wrong with the baby or there's something wrong with you, or maybe even both of you!
 
You make an appointment with the psychologist and you pour your heart out to him.
 
"Well," says the psychologist, "You definitely have several unresolved issues to work on.  Come twice a week for the next three months and we will assess the situation then."
 
Three months go by.  You forgive your mother for not buying you the doll you wanted when you were five.  You forgive your father for grounding you the time you stayed out too late.  You even forgive them for caring about you so much that they insist you check in with them when you're on a date with someone for the first time.  Dad was always there with his car keys ready to pick up his only daughter at any time, and from any place.  Mom was always awake when you got home, waiting to hear if you had a good time.  Did they hover too much?  Maybe.  But with the help of the therapist, you are now able to forgive them for this, too.
 
In the meantime, baby has not shown any improvement.  So you bring him to a child psychologist who says he is fine.
 
"I must be crazy!" you think.  And by now there is a second child on the way.  By this time you've been on an emotional roller coaster for so long you are dizzy beyond belief.
 
You don't know how you will manage to get through this pregnancy, but somehow, you do.  And, of course, you are worried about this baby, too.  But, Thank G-d, he turns out to be healthy, well adjusted and smart as a whip.  By now your first child is almost four and you've changed pediatricians.  When you express your concerns to this doctor he suggests you take your son to a pediatric neurologist, which you do.  He is now diagnosed with Minimal Brain Dysfunction, or MBD, now referred to as ADD or ADHD.  Alphabet soup for dinner again!  Your concerns have finally been validated but you don't know what to do.  Since there is no Early Intervention, you enroll him in a reputable nursery school.  He does well that year and in kindergarten.
 
In first grade, he is put in a special education class.  At this point, he is seen by the school psychiatrist who diagnoses him as Autistic. 
 
The emotional roller coaster that ensues makes the earlier years seem like a long, dreary ride on a boring highway.
 
I'm reminded of the joke where this guy gets the blinker lights on his car fixed. He wants to know if they are working, so he tells his friend,
 
"I'm going to turn on the blinker.  You stand in front of the car and tell me it it's working."
 
"Okay," says the friend and he steps in front of the car.  The friend looks at the lights and says, "It's working... it's not working... it's working... it's not working."
 
In my endless quest for stones unturned, we tried a nutritional approach, which had no effect.  We took my son to a family who had supposedly brought their own son out of his Autistic world.  This, too, failed to "cure" my son.  He attended several different schools, none of which met his needs, except for the last one.  With every new approach my heart would soar in anticipation.  With every failure I would become more depressed.
 
"Maybe this will do it," I hoped.  "There are only so many years left until he is grown and then the dye is cast.  There are times when I considered refusing a treatment because I just couldn't live through another disappointment.  But this was not about me.  This was about my son and regardless of my feelings. I owed him every opportunity to become "normal".
 
It wasn't until I went to a particular PTA meeting that I was able to put things into focus.  This particular PTA meeting was for parents of gifted children.  You see, my younger son was in the gifted program all through school.  All we wanted were "normal" children and ours were at both extremes of the spectrum.
 
The parents at this PTA meeting were somewhat distraught because their children were not typical.  One mother even stood up and, in tears, asked how she could deal with a child who was quicker on the uptake and knew more than she did.  Not one parent at the Special Needs PTA meetings was so negative.
 
"Excuse me," I interrupted, as I stood up.  "But my older son is in Special Ed. and the parents there have a much more positive outlook than I'm seeing here, tonight.  We were blessed with gifted children.  Indeed, they are very special gifts.  Why can't we love them and accept them the way they are and do everything in our power to help them reach their full potential?"  "They will certainly bring us a lot of joy."
 
It wasn't until I sat down that I realized what I had said.  I had found the key that would unlock the barriers to my son's and my own achievements.  I have learned to accept what I have today while striving for a better tomorrow.  This works across the board and helps to keep me somewhat sane.