This guest post is from Phillip Hain, the National Director of the Team Up! with Autism Speaks, and previously served as West Region Director and Executive Director of Autism Speaks’ Southern California chapter. He lives with his family in Glendale, CA.
I’ve been an advocate for my son Andrew since 1996 when he was first diagnosed with Asperger Syndrome at age 3½. There is a great deal of irony in calling myself an advocate because when my wife and I first heard the news that would change our lives, my initial reaction was, “At least he doesn’t have autism,” and I didn’t know what being an advocate meant.
I am simultaneously amused and flattered when people compliment me on my knowledge of the complex system of services we’ve learned to navigate, because neither of us really knew where to start or what to do. I tell them that everything we know was acquired through asking lots of questions, persistence, and the simple desire to give our son the best possible life — without knowing what that was. I’ve learned a few things on this path.
Progress can’t be predicted
I remember at some point in those early months feeling really depressed as I was watching a television news program in which a toddler was featured as a hero because he dialed 9-1-1 when his mother was having a severe medical issue. My primary thought was, “I wonder if Andrew will ever be able to speak in full sentences and make a phone call.” It’s probably amusing for people who know him to hear that because somewhere around age 10, Andrew insisted on answering the phone every time it rang. That hasn’t changed.
Have faith and trust that they can do more
Andrew loves meeting famous people, which includes local television reporters. Several years ago he saw one was at a nearby shopping mall doing a story the day after Thanksgiving, the busiest retail day of the year. Of course he wanted to go and we told him we had no intention to fight crowds that day and his response was, “I’ll walk there myself.” He was 14, had a cell phone and knew the route. We (reluctantly) said ok, call us when you arrive and keep us posted. It all worked out and he even got the requisite “celebrity” photo.
Be prepared for surprises
Once when Andrew was in high school he did not do well on a test and the teacher told him to take it home and have a parent sign it. What he didn’t calculate was that we were constantly in communication with this teacher, so when he forged his mother’s name, he was caught. While we didn’t approve of his action, we had to celebrate the fact that he did something generally associated with typical kids.
We have a different scale to measure success
When Andrew graduated high school, I was a proud parent in a crowd of 275 proud parents and needed to figure out why I felt different than the others. I realized that for many of their kids graduation was an expected rite of passage, but for special needs families it is not a foregone conclusion. We hope for it but it’s less of a guarantee. Because of what he had overcome I took satisfaction in feeling a bit more pride, and when I found out his class ranking was right in the middle of the group, that meant he had done better than half of his fellow graduates.
Take a chance
Earlier this year my wife and I planned a 12-day European trip to celebrate our 25th wedding anniversary and started making arrangements for Andrew to be with friends when he said he wanted to stay home by himself. We gave it lots of thought and decided to make it work, but not before giving him the names and phone numbers of more than 30 people who offered to take care of any possible emergencies. With thanks to texting and international phone calls, it was a success and a big step towards future independence.
Andrew is currently in community college and his career aspiration is to work in the television industry with the eventual goal of being a game show host. And even though he has the personality to be one, it’s a very competitive field so we can’t predict if that will ultimately become a reality. But whether or not it does happen, our expectations have already been exceeded.