Lesson #1: There Is Life After Autism   (Maureen)

I remember in the early days of the mothers' group that my favorite topic was called, "what I did in my former life"...when you found out the parent, who for the last year had been agonizing with you over toileting and behavior issues, had 4 PhD’s in nuclear physics!

But early on, it did feel like life as I knew it and planned it was over. And this new life felt ominous, like a dark cloud descending overhead. I felt like the guy in the Golden Corral commercial who gets hit in the head with a frying pan, stunned and dazed. But the fog was sometimes a relief compared to the intense feelings of sadness, anxiety and fear.

I was sad because I had expected a child who would be the perfect combination of our best qualities. This is the same dream we have for all our children. Like the beautiful little girl in the MasterCard commercial who is calmly eating a bowl of cereal, and the narrator's voice says, “MasterCard: for the piano lessons she'll need to play at Carnegie Hall; a tennis racket, for her win at the U.S. Open; a globe, for when she graduates first in her class at Harvard...". We all believe our children will be perfect. But the real truth is in the next part of the commercial when she calmly picks up the bowl of milk and tips it over her head.

Eventually, all our children will calmly turn the bowl of milk over their heads. But by the time we realize their failure to be perfect, we are caught up in the fascinating reality of who they really are. The dream of perfection for them erodes over time. The child I got was so different from my expectations that the dream eroded immediately and I felt like I was left with an imposter. And that the life I dreamed of was ruined. I was sadder than I had ever been before and the future looked bleaker still.

I also felt incredible anxiety during those early years. Life felt like when I am on an airplane, holding on to the armrest for dear life, white knuckled, fully convinced it is my grasp, my concentration, and my will that are keeping the plane aloft, and if I relaxed, the plane would crash.

Some of this anxiety comes from the fact that while the umbilical cord may be cut at birth, the emotional umbilical cord is forever. And its powerful visceral bond keeps us on high alert for perceived threats to our kids and evokes the momma bear response. Again we have this response with our typical kids as well. Think of the last time your child did not make a team, made a lesser grade than he deserved, etc. But with our children with autism, it is closer to the surface since life feels so threatening and unpredictable. The question is not if, but when, the next crisis will be.

My anxiety caused me to work with Justin all the time. I ran around to every therapist and did almost every therapeutic approach then in vogue, including discrete trial where the question was who would leave the table yelling or screaming first, Justin or me? I was haunted by a distorted belief that if he did not learn everything by age 5, he would never learn certain key skills, and that life after 5 would be mostly maintenance and not real learning. I worried that if he remained non-verbal, he would never be able to communicate his needs.

What I didn't know then was despite the extreme importance and benefit of early intervention, Justin’s greatest communication breakthrough would be at age 8, when he finally stopped using tantrums to communicate and physically took us to what he wanted. After years of what we called "the 2-person drag"—two adults supporting him on ice skates—he got on the ice rink one day and did a 2-hour Ice Capades quality show. At 20, he is becoming a much more focused worker. He is, as many of the adults I see, a lifelong learner. It is almost as if he finally began to understand the world and could finally get those synapses firing correctly enough to focus. It seems like he is learning more now. he is still non-verbal, but even the casual observer would attest to his ability to communicate his wants.

In the early days, I also had many fears. Fears about Justin and the quality of his life, his vulnerability, how people would react to him. Fears about ourselves, whether we would be able to love him when he acted so unlovable. Would we be able to provide for him and his many needs? Would live ever regain a sense of normalcy, or joy? I feared that every problem he had would last forever. I remember carrying Justin for the longest time, despairing he would ever learn to climb stairs, only to find out I would exchange this for my fear of his spider-man type climbing up bookcases by the next year.

                      Good news: problems don’t last forever.
                      Bad news: You get new ones to replace them.

My greatest fear, which is shared by parents of children with severe aggressive behavior, was…what will happen when Justin is bigger and stronger than me? (which he has been for quite a while...) While Justin’s behavior is still our biggest challenge and can be very difficult, I'm not fearful anymore because I have learned other strategies to cope, both emotionally and physically, as has Justin. What I did not realize is by the time I had to face these issues, I was a different parent-more experienced, more confident, more knowledgeable about who Justin was and how to get the help I needed.

Looking back, my friends and I agree that the early days are the hardest. We found that our fantasies of what would happen in the future were much worse than the realities we faced. It is not that all sadness, fear and anxiety end, but the intensity diminishes as experience, support and time provided a counter balance in our lives. Here is some of the advice I would give myself when Justin was young:
Breathe – Try to lower the intensity
You won’t always be this sad, anxious, and fearful
Life will not be as predictable as you want and it will be hard, but not all the time
You grow into the role of parent and with each crisis you survive, the less fearful of the future you will become. The actual problems of parenting a child with autism are often different from the problems you expect
Try to take it one day at a time (sometimes it seems like one hour at a time) and live in the present. As my Irish grandmother used to say, "Don't borrow trouble." Focusing on all the future problems you fear can be paralyzing. Concentrate on improving your daily life.
Autism will not always define your life. It recedes as time passes and becomes a part, but not your whole focus. I used to think the reason you don’t see parents of adults in autism related activities was because they were too overwhelmed and too depressed to go out. Now that I am one of them, I realize it’s often because there are too many other things for me to do!