I sat that cold January afternoon by the diving board watching our coats. Mark, his sister Grace and his little brother Vic were at the other end of the high school pool holding on to the side. My husband, Marty, was with them on this scouting party. A line of nine-year-old boys waited to jump off the diving board in various positions of cannonballs and all-out belly flops. They shivered as they left the warm water and padded with wet bare feet to the back of the stairs leading up to the board.
I watched them and a ball of sadness rose from my stomach to my throat. It finally settled in my mouth, which twisted oddly, as I tried not to sob. Hot tears filled my eyes and I got up to go to the cooler bathroom. I walked in the stall and began to cry. It’s not fair. It’s just not fair. I put on my pity party hat and sat down to celebrate with myself.
Mark has a condition known as Asperger’s Syndrome, which is a high-functioning form of autism. The symptoms include insistence on sameness, impairment of social interaction, restricted range of interests, poor concentration, poor motor coordination, academic difficulties and emotional vulnerability. Translated into real life, it means that without a written schedule, Mark would have an emotional meltdown every time his teacher moved on to another subject. His difficulty with social interaction makes it very hard for him to look you in the eye and in some cases, to answer a simple question correctly. When he was two years old, he had a fixation with numbers; when we would read Dr. Seuss, he was more interested in the page numbers than the funny pictures. He has the body of a normal nine-year-old, but has the hand/eye coordination of a four-and-half-year-old. After kindergarten, the birthday invitations stopped.
The troop leader began to test the skills of the boys. Mark held on to the side of the pool and stayed close to Marty. Mark yelled and I heard it above the other's voices.
Many of these characteristics seem like they include many children. They can, which is why experts now use the term ASD or autistic spectrum disorder. The spectrum or range of the disorder may include obsessive-compulsive disorder, autism, and in special cases, ADHD. In Mark's case, my husband and I really didn't notice any problems, just a nagging suspicion. He was extraordinarily bright and we had him evaluated by an early childhood program. Mark looked like any other boy; his disability was and remains hidden.
One day when he was four years old, I happened to watch ABC's news program "20/20" and there was a segment on hyperlexia. Hyperlexia is a specific type of learning disorder. A hyperlexic child may be able to read, or decode, high school level words but have the comprehension level of a preschooler. Their verbal skills could be impaired as well; sometimes they might use words inappropriately or have difficulties answering simple questions. Hyperlexia can be associated with Asperger's Syndrome. When I saw this special, I knew Mark had this hyperlexia disorder.
Collecting myself, I walked over to check on them. Mark was upset at his little brother for something and my daughter was swimming a few strokes under the water. Marty looked at me and sighed.
Just the name autism used to strike fear and devastation into my heart. I always pictured autistic children sitting in the middle of the room rocking back and forth. Not my bright little boy who read and told time when he was three-and-a-half. Not my cute little son who could count to 100 and read the words, “Drive thru Pharmacy” at 4 years old. However, when he reached Kindergarten, we knew that something was terribly wrong. He would have crying meltdowns twice a week or more. He couldn't concentrate on his schoolwork. I expected the diagnosis as Asperger’s Syndrome; I, after all, had read all about it. More of a social problem than anything, and a few learning problems, no big deal. I didn’t flinch or cry when they told me at the meeting with the specialist who evaluated him, while his teacher, the nurse, the speech therapist, the social worker, the psychologist and the principal looked on. I was prepared.
The troop leader waded over to Marty and Mark. Marty shook his head and the leader waded back towards the group. Mark was too preoccupied to notice his leader. Mark would not participate today.
I did not expect the sorrow. I could hardly contain it and I had to with two other little children. The beautiful days of enjoying my younger children flitted by as I struggled to get through each day. I was alone in my journey with little connection to anyone under similar circumstances. Oh, I went to Bible studies and found love and sympathy, but no comrades. Not for many years.
Kindergarten passed to first grade, then second, and now third. Mark’s brother and sister grew and soon there were no more babies in the house. But there was no more bitterness either. When I had come to the realization that I was powerless and that I could not fix this condition in my son, I felt better. The bitterness that had both kept me together and ate at my soul slowly left me. I was able to see the sun again.
There were days, though, when the waves of sadness washed over me. Little things bothered me. His lack of a social life mirrored my own struggle as a child. Watching him stand alone waiting to go inside the school felt like a knife in my heart. The yearly meetings were exhausting and heartbreaking, particularly with the physical education teacher. We had to work with the school to help him overcome the fear of loud noises. My heart, a mother's heart cried, “What will become of him?” and “Why?” - knowing that there would be no easy answer.
So there I sat, watching. The boys going in and out of the water. Waiting for their buddies to get in line. Yelling at their friends on the diving board and laughing. How lovely it would have been for him to have friends like this; I wonder what it would have been like if only... My son with his father, his younger sister and little brother at the opposite corner of the pool, my little boy hanging on the side.
It was finally time to go, and I walked over with the towels. I was uncomfortable, dressed in a sweater for a cold day, not a pool party. Besides my hat, I now had pity party balloons, noisemakers and special confetti that dissolved into tears--I throw a great party. As I stood waiting for the kids to come out of the water, my husband looked up at me, beaming.
“Mark put his face in the water and held it there for several seconds. Isn’t that great?”
I put my hat away.
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