My first grandchild was born in 1993. He was a delightful, social baby and loved to be held and cuddled. His huge brown eyes with their unusually long, dark lashes gazed into our eyes and captivated all of us.
He played with his toys and was a very happy little boy. Right on cue he reached all the usual milestones-talking, walking and all the things a young child learns to do. He began to make sounds that soon evolved into words that strung together to became sentences. Although Jordan never really crawled, he stood up one day and began walking.
His sister was born when he was two. Jordan was excited to have a baby sister at first, but a year later, when he was three and his sister began getting around on her own, starting to play with her own toys and sometimes his things, Jordan began to change.
This insidious change began so slowly that we did’t’t notice anything unusual at first. He started to take toys away from his sister and other children, sometimes hitting or pinching to make them cry. He’d laugh when others got hurt. He didn’t seem to grasp the concept of sharing or taking turns.
When Jordan was pulled aside and scolded or given a time out for his actions he just waited quietly, entertaining himself until it was time to play again, and then he would resume his disruptive behavior.
I noticed he seemed withdrawn and didn’t pay attention when people spoke to him or told him stories. He began fixating on things and would play for hours and hours with that one object. Also, he would become very upset if he was guided to something else. He wanted to keep doing what he had been doing. Change bothered him immensely. It was extremely hard to get him to do something that was outside his normal routine.
The behavior I noticed most was that Jordan had stopped looking into my eyes or directly at anyone. He’d gaze somewhere off into space, not appearing to hear what was being said. He didn’t respond when he was called or asked something. I wondered if he might have a hearing problem that was preventing him from responding to us when we talked.
Other unusual behaviors surfaced suddenly when he was three. Jordan couldn’t be consoled when he cried, he didn’t want to be picked up and held and comforted like he used to. He’d pull away if someone went to hug him or take his hand. He seemed to be drawing inward and shutting out the world. We all knew something was very wrong. Jordan was pulling inward and we couldn’t reach him. He remained locked in his own world for three long years…
The moment I learned of you
I wrapped my arms around a tree
That was connected to the
Earth by centuries-old roots and sang
You came on the first day of spring
Your huge bright eyes caught mine
And pulled me into your world forever
Our centuries-old roots entwined
One day your world shifted
To another dimension and you
Dropped away into yourself
Your huge eyes pulled inward
They could not search outside your vacuum
I held you close and felt your pulling –
Like waves leaving the shore
I held on tightly and rode them with you over and over
Until our eyes could meet once again and
Our centuries-old roots entwined forever
After much psychological testing, we learned of a diagnosis when Jordan was about four. He had a pervasive developmental disorder (PDD). PDD is a disorder that interferes with a person’s ability to communicate with and relate to others. PDD is one of the spectrum of diseases classified under autism, so is Asperger’s syndrome (AS). Asperger’s is Jordan’ diagnosis. Sometimes AS is called high functioning autism. Where autism has an onset before three years of age, Asperger’s syndrome commonly occurs after the age of three.
Asperger’s Syndrome is a term used when a child or adult has some features of autism but may not have the full-blown clinical picture. There is some disagreement about where it fits in the PDD spectrum.
Some people with Asperger’s syndrome are very successful and until recently were not diagnosed with anything but were just seen as brilliant, eccentric, absent-minded, socially inept, and a little awkward physically.
Other features of AS include clumsy and uncoordinated motor movements, social impairment with extreme egocentricity, limited interests and/or unusual preoccupations, repetitive routines or rituals, speech and language peculiarities and non-verbal communication problems.
Most of these children have excellent rote memory and musical ability and become intensely interested in one or two subjects. They may talk at length about a favorite subject and appear to be ‘in a world of their own’ and preoccupied with their own agenda.
Jordan exhibits most of these features – some to a much lesser degree than others. He has always been fascinated with certain topics. I think he is extremely interesting and I love to hear all about his interests. No one knows where he gets his vast knowledge of some subjects and he is continuously surprising us.
My grandson is 10 now and in the fourth grade in a regular classroom. He takes special speech classes away from his regular class and has done this since kindergarten. We all have been through so many changes since his birth.
When my daughter and her husband and I learned of Jordan’ diagnosis we went through the whole gamete of emotions, not unlike Kubler-Ross’ stages of death and dying. We had faced a loss too: The loss of a dream.
All parents and grandparents have dreams about the future of their children and grandchildren. We look forward to their school years, learning to read and do math, science, history and all the other subjects they will learn. We look on toward college and what they will become – what they will make of their lives – marriage, grandchildren, great grandchildren all these things are in our thoughts for our child or grandchild’s future.
When one has a child with autism/Asperger’s’s syndrome, many of these dreams will never happen. Many will, but in a much different perspective than we can even imagine. We have to play a ‘waiting game’ to see how far a child will be capable of going. The future and everything about it is uncertain.
With Jordan we all wonder if he will continue to progress as he seems to be doing now. What about junior high school and high school? Will he go on to college? Will he be able to obtain a driver’s license, a job, a marriage and family? All are uncertainties that we dare not even dream about. We live each day in the present. We wait to see the reality of the future.
Today, Jordan is a normal fourth grade boy in many ways. He is also very different from the other young boys in his class. Fourth graders start noticing ‘differences’ in their classmates and are often cruel to the children that aren’t the same as them.
We have been dreading the day that bullying and teasing may start for Jordan. It seems to have begun last week. This will begin a totally new phase of his life.
Jordan gave me permission to include a short story he wrote in his language arts class. This is his story exactly as it was written…
One bright sunny afternoon flowers bloomed. Spring was in the air. On a leaf a butterfly dropped me. I was green and round, like a salmon egg. It was bright and yellow all around me. Soon it was time to hatch. I began to eat my way out. My egg tasted like a pea. It was so yummy. Soon I looked at myself. I was blue, with things coming out of my back. I chewed off the stem of the leaf. The leaf gently fell on the grass. What a ride! I saw a nightingale coming toward me, and I tried to climb under the leaf. I smelled something funny, the bird flew away. I had fallen on a stinkbug!
I made a cocoon. It was sticky like drool. It was warm. I fell asleep. I melted and went down like a puddle. It felt wet and squishy, also like a warm bath. I woke up.
I changed. I had beautiful wings. Blue and yellow wings. I found a mate.
As I copy this poem, I wonder if Jordan realizes how much he is like that beautiful butterfly. He has eaten his way out of a 3-year stay in his own cocoon. Jordan worked very hard to escape his vacuum; then he gently fell back to us.
‘What a ride!’