By Susan Colón

Our days quickly became filled with planning for the new school year. Individual
educational plans were in place, yet in my heart I questioned whether my one son, who
has an autism spectrum disorder, would receive the services and supports he needed in
those many hours from morning to afternoon in his first grade class. He was
mainstreamed, very high functioning and having no problems keeping up academically.

I was nervous but knew it was time to turn this over to his teachers and not dwell in the
many worries and projections of worry that swirled in my head regarding his future.
It was into the second week of school when my father fell ill very quickly and was
hospitalized. My parents lived only two blocks away from us, and our two sons spent
time almost daily with my father. Now Pap was lying in a hospital bed with a large GI
tube pumping out what we would later realize was cancer. We chose not to take our sons
to see him that way. We feared the image would remain in their minds, surpassing all the
happy images and times they had enjoyed with him. My son’s autism often led him to
obsess over certain upsetting images for long periods of time. This situation was stressful
enough.

We celebrated my younger son’s birthday while my father was in the hospital. For
the first time ever, Pap did not join us. We had no idea at the time, but he was dying.
My husband took the children to our dear friends’ house to stay and I think they suspected
something was wrong. Pap passed away in three days time. And, early one September
evening we had to tell our sons that Pappy went to heaven.

Many experts claim children with ASD do not experience empathy; my son
exhibits as much, if not more than his ‘typical’ peers. He is very caring and loving and
cannot get through the day without big, deep hugs. These hugs soothe and contribute to
his well-being to such an extent that we had it written into his individualized education
plan. He would require many, many hugs through this difficult time. We all would.

One evening when we were snuggled in bed during our evening routine, my son
looked at me, making perfect eye contact and said, “Mommy, I believe in you.”
It is impossible to describe to anyone what his words meant to me, especially at
that moment in time. To parents of a child with an autism disorder, words are precious.

These specific words struck awe in me. My son – the boy who was supposedly lacking in
empathy - had given me more in four words than all the caring, well-meaning adults were
able to share in their 50 sympathy cards.

We managed through the first holidays without Pap in our lives. Each word and
memory was quietly and carefully considered before being spoken. His absence left more
than an empty chair where he had sat. We each silently understood that although there
was much more wonderful life to be lived – everything would be forever different
because he was not here to share it with us.

My sons have adjusted to our loss and continue to share their happy memories of
my father in a healthy way. Even my son with autism frequently says, “he was the best
Pap ever.” Life brings about change. We lose and we gain as the circle of Life completes
itself. During those early days of September, I would not have imagined that my father
would pass from our lives so quickly, nor my son with ASD would touch me so tenderly,
with so much sympathy and empathy. Whether or not our spectrum children are able to
tell us, they do love. They do love us - that I know now, without question.