7: The Boy Who Drew a Face

7: The Boy Who Drew a Face

From Chicken Soup for the Soul: Raising Kids on the Spectrum

The Boy Who Drew a Face

I see people with Asperger syndrome as a bright thread in the rich tapestry of life.

~Tony Attwood

My husband and I have two wonderful sons. Our older son, Alex, is a handsome twenty-year-old who plays the piano and tennis, loves movies and music, traveling and the beach, and has a smile that can light up the world. He also has Asperger syndrome.

I remember vividly the moment when a capital “A” would forever describe his condition, not merely the first letter of his name. It was a day Alex and I visited the Head of Child Psychiatry at a large Chicago hospital. An OT and psychologist had been working with him. But, given his tender age, they hesitated to label him. She did not. She ushered me back into her office, just minutes after meeting with my son alone, and said, “I know that you already have concerns, so this diagnosis will not come as a shock.”

It was most definitely a shock, as I struggled with the enormity and finality of the diagnosis. Even though he didn’t relate to his peers in an age-appropriate way, even though he perseverated on words, actions, thoughts, and feelings, I wanted to believe, had to believe, that we all got it wrong. This had to be just a phase.

It wasn’t just a phase and we began our Autism Journey that day. It has had many pitfalls, but some triumphs as well. The road is bumpy and less traveled than most paths. But, if you keep your eyes on the vista ahead, you will learn things about your child, yourself, and the world that others, in the clamor and speed of daily life, cannot possibly comprehend.

The early years were about learning to navigate the world and we are grateful for the many dedicated teachers and professionals along the way. Alex had sensory integration issues galore, crying jags and tantrums, and many fears. He was like “Swiss cheese,” one teacher told me. He had strengths, but large, gaping holes as well.

We learned, over time, that he didn’t like a large painting we had hanging in our family room. It was a Modernist painting of a woman gazing downward. Eyes, as they say, are windows to the soul, and hers were closed.

I was perplexed when his kindergarten teacher called me in to tell me that Alex had defaced school property. That wasn’t like him. I scanned the classroom and saw a busily decorated space all done up in red, white and blue. Nothing seemed amiss. When I inquired about the problem, the teacher held up a tiny peg of wood dressed up as Uncle Sam. On it, my sweet, young son had delicately added two dots for eyes and a thin straight line for a smile. He couldn’t stand to look at the figurine without a face. It was his best artwork to date! I thanked her for making me aware of the infraction and left the room promptly before I said something I would regret. I had already learned to pick my battles.

At the end of the year, we changed schools and school districts. Our new school district welcomed us with open arms — even after we told them his diagnosis. It was a struggle at first, but by middle school, he was getting A’s and B’s — and we actually looked forward to meeting his teachers at Parent Night.

I would like to tell you that the last two decades have been easy and that we have solved the autism puzzle, but we have not. Yet, Alex has gone from a fearful, timid boy to a bright and sensitive young man who became a National Honor Society recipient in high school. When he received the JFK Award for Courage last year, given to one high school senior who has overcome great obstacles, he received a rousing, standing ovation from the packed auditorium. There was not a dry eye in sight.

Alex is now living and studying at a small, New England college. Just this morning, he locked himself out of his dorm room and called to tell me that he couldn’t get back in. He did the same thing yesterday. He is still learning. I nag him, now over the phone, but I could not be more proud of him. Only his dad and I truly understand what a miracle this step toward independence is.

To the parents of newly diagnosed children on the spectrum, I would like to give you a collective hug, along with some words from the heart:

• Subdue self-doubt and recriminations — I spent too many nights crying myself to sleep and walking around like a zombie the next day.

• Find an Autism Angel to talk to — someone who has been there and that you can connect with. My friend, Sharon, is mine.

• Don’t waste your time on people who don’t care about you or your child, or who criticize either one of you.

• Look into respite care and find time for yourself — even if it is just an hour or two once or twice a week.

• Savor the precious moments when your child masters something new or has a good afternoon.

• Resist comparing your child to anyone else — it is an exercise in futility.

• Don’t neglect your other children — they need you too.

• Chart a new path. Think outside the Neurotypical box.

• Most importantly, have faith — even when all reason shouts not to.

~Shari Cohen Forsythe

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