Autism – A Family’s Journey and the Lights Along the Way

Note: April is National Autism Awareness Month.

Autism.

There was a time when I couldn’t even say the word out loud. It was too painful, too devastating to utter. I wanted to believe that if I didn’t say the word, it didn’t exist. But it does exist; it’s real, and it’s beautiful, and it’s challenging all at the same time. And whether I say the word or not, my son Chris has autism.

I’ve been on this autism journey for 30 years now, more than half my life. Back in 1990, when Chris was first diagnosed, there was no autism awareness month, because there wasn’t autism awareness. Family, friends, and neighbors looked at me quizzically when I shared his diagnosis. What does that mean? How did he get it? How do you cure it? But I did not have the answers. Even the multitude of doctors we saw could not provide the answers. Since that time, there has been an exponential increase in the number of children diagnosed, and almost everyone has been touched by autism in some way. So today, when a family shares the diagnosis, others are usually aware of what it means.

As I reflect on the past 30 years I recall so many memories. I remember, as if it was yesterday, sitting in the doctor’s office; the diagnosis confirmed my fears following months of research into what might be causing the unusual behaviors of our little boy.

I remember…calling anyone and everyone I thought might help my family; the feelings of isolation at the playground, Sunday school, birthday parties, and all the other places where we just never seemed to fit in; the stress before every outing, wondering if there would be a meltdown or some other embarrassing event; wondering if my marriage would survive the stress; and the feelings of inadequacy for not parenting my children the way I thought I should have.

I remember the fear, guilt, and sheer terror of not knowing where my child was that day when he wandered off. But I also remember the intense relief and gratitude I felt when he was found.

I remember the vast uncertainty I felt when Chris was diagnosed, wondering what his life would be like as he grew to adulthood. And now that we have reached that point, I want to share some of the bright lights we encountered along the way, especially for those of you who may be new to the journey.

When he was four, I remember watching Chris climb aboard the school bus to begin the 45-minute ride to his “special” school. My gut told me that he needed to be with his community friends, and I spent years trying to persuade my school district to serve him in our local school. I learned about Chris’ right to be included with his neighborhood peers when I attended a workshop hosted by the New Jersey Statewide Parent Advocacy Network (SPAN), our state’s federally funded Parent Training and Information Center. SPAN became one of the bright lights on our path. The information our family received from SPAN allowed us to develop an IEP (individualized education program) that brought Chris back to our home district for high school. I remember watching anxiously as he disappeared into the building on his first day of high school, also his first day of school in a general education setting. Despite my concerns, I remember how kind and supportive Chris’ peers were to him; serving as beacons lighting our journey. I remember Chris learning math, reading, and how to play an instrument—things I was told he wouldn’t be able to do—and working with teachers who never gave up on him. And I will never forget, four years later, watching him climb into a limo with friends to attend the senior prom. My heart was so full of happiness and pride I thought it would burst.

This journey has taught me a great deal; autism has been my teacher for some of life’s most important lessons:

Gratitude

Autism helps you to be grateful for the small things, the things you might have overlooked had they not been such a struggle to achieve: hugs, first words, friends, independence, general happiness and physical health. I’ve learned to take nothing for granted.

Community

I continue to be in awe of, and inspired by, all the people we’ve met on this journey, most of whom have gone out of their way to help us any way they could: doctors, teachers, therapists, neighbors, friends, strangers, other families on the same path, and my colleagues at SPAN. Today, Chris has a circle of support that makes it possible for him to live a full, rich life. My husband and I appreciate the love and support of family; siblings have been caretakers and cheerleaders, and extended family members step up and help, no questions asked. Autism has taught me that I can’t do it all alone, no matter how hard I try. We need the support of others and must learn to accept it graciously.

Courage

Fear is an everyday struggle on this journey. I fear what will happen today and in the near future, and dread what might happen to my child when I’m not able to care for him. I feel trepidation in trying something new, and doubt with every life decision. But sometimes I must take a leap of faith. In this, I have always been rewarded, either with success or increased knowledge, both very valuable. I have learned to trust in myself and follow my gut.

Forgiveness

Of yourself and others. Don’t hold onto past mistakes and don’t carry the burden of anger and resentment toward others. Learn to let go, learn from your experiences, and move on.

Humor

Laugh at yourself and your circumstances. Laughing releases endorphins and helps you feel good. We can learn a lot by seeing the world through a different lens and by not taking things—or ourselves—too seriously.

In closing, what I want to share with you more than anything is how immensely proud I am of Chris and all he has accomplished. He is a 30-year-old man living with autism, working and volunteering in the community, and often struggling to find his voice and get by in a world that can be overwhelming for him. Yet he manages to do it with dignity and grace, with unwavering support from the circle of love and light that surrounds him—his parents, siblings, and extended family; his peers, support staff, and therapists; our neighbors and friends. I shall always be thankful for Chris and the guiding lights that autism brought into our lives.

 

Carolyn Hayer is the Director of Parent and Professional Development at the Statewide Parent Advocacy Network (SPAN) in New Jersey, an OSERS-funded Parent Training and Information Center. 

Cross-posted at the OSERS blog.

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