Ever the Optimist

By Ellen Notbohm

It’s hard to believe six years have passed since I first wrote about my family’s experiences living with a child with autism. My son Bryce, the impetus for the writing, was finishing elementary school. When the last-day pizza party ended, he flew out the door without a backward glance (“I’m a middle-schooler!”).

Six years on, Bryce is now a high school junior, at the top of his class academically, and a competitor on one of the state’s top-ranked track teams. There’s a shaver next to his toothbrush in the bathroom, and he’s just completed driver’s ed.

The changes have been many, but some things never change. One of them is the optimism I expressed when I first wrote about the possibilities for my son’s future. I realize this mindset doesn’t come easily to all parents and teachers of young children with autism. But it is the only approach that made any sense to me, because optimism feeds on itself. The more optimistic your outlook, the more reason you are given to be optimistic. I am the living example of it and wouldn’t be preaching the gospel of optimism to you today had that not been so. How different a story I’d be telling today if I had despaired of my young son who backed away from peers with hands over ears, played in the corner by himself at preschool, wouldn’t enter a restaurant, attacked at the word “no,” spent hours a day in meltdown. I never accepted that the way things were then was the way they would always be.

From meltdown to mellow, from isolated to engaged, my young man today rarely expresses more than fleeting anger and has placed himself squarely in the center of teen life at his school. And six years from now, I will be telling you things I cannot imagine today.

If you are somewhere behind me on that path, let me hold up the lantern and share some guiding thoughts.

Your child is still the same child you fell in love with the moment he was placed in your arms for the first time. Everything you loved about your child before you heard the word autism is still there. Everything he loves about you is still there. It’s just that he is going to need you even more than ever.

You can do this. It’s OK to admit that when you signed on to become a parent, having a child with extraordinary needs may not have entered your thoughts. Now that you have one, you may feel you are in over your head.

Being in over your head isn’t synonymous with drowning, or even flailing. With the right training, many people swim for miles in water over their heads. I can still see myself as a child, with my swim teacher walking our class to the deep end of the pool for the first time. “There is nothing different about the water in this end of the pool,” he said. “It’s not any wetter, it’s not any bluer, it’s not any colder. The only difference is that bottom is farther down.” Then the clever devil told us that human bodies have buoyancy and that we couldn’t sink to the bottom unless we really tried. You can guess where this went. After a few sprints across the pool to prove that we could in fact survive being in over our heads, we took to jumping off the diving board with enough velocity to touch bottom, twelve feet down. Knowing exactly how far down the bottom was only increased our confidence. We were buoyant.

So are you.

Time is on your side. Wanting to know everything there is to know about autism is the understandable reaction of many parents. But it is possible to overwhelm yourself with information, some of it contradictory.
Rather than coming out of the gate confused and conflicted, start by knowing you have lots of time to guide your child to adulthood – years and years. It will be a process, not an event. Explore resources and opportunities as they present, understanding that your child’s needs will change as he grows. Yours will too, as will the knowledge and insights in medical science and education. In the face of such exponentially increasing opportunity, no generation previous has ever had more reason to be optimistic about the future of our children with autism.

Listen to your inner voice. No one knows your child better or loves her child more than you do. That doesn’t mean you know it all, but when you trust your instinct, that little voice will frequently tell you to seek more information, look for a different solution, find other services, even other friends. While it is important to listen to practitioners, teachers and other parents, their experiences, however successful for them, are not mandatory for your child.

Strike a balance before you’ve allowed your child’s disability to envelop you.

For your child. Strive always to balance the demands of autism with typical child development needs. They are no less essential.

For your family. Don’t let your child with autism’s needs blockade him from the rest of the family and community. Don’t focus your energy on him in a manner that suggests that other members of the family are less important. Treat him as the whole person he is, a full-fledged member of your family, with age- appropriate responsibilities to the other members. Neglecting the needs of siblings or letting professional appointments and services completely dictate family life sends a message to the child that she is the center of a universe around which everyone else revolves. It’s not a message she can take into productive, independent adulthood.

For yourself. Letting your child see you as a versatile adult who is involved in the extended family and community, pursues hobbies, enjoys friendships, takes care of her own health, allows herself fun and respite – this sets the best kind of whole-person example for your child.

You will always have choices. Sometimes you will not like the choices, and sometimes the choices will be downright bad. But there are always choices, and learning to recognize the full range of choices available in any situation will help you feel confident in your ability to make those choices. Become aware that your daily life is a continuum of choices that you make minute by minute – what to wear, where to go, what goes into your mouth, what comes out of your mouth, how to question your boss, how to answer your children. It’s a gift not only to have so many choices, but to have the ability to choose, to exercise that control over your life.

It is not true that “autism happens to the whole family.” The needs of a child with autism can certainly affect the whole family, but the only one it’s happening to is the child. This is the rare instance in which someone had no choice in the matter, and that someone is your child. The rest of the family has myriad choices in how they choose to deal with it or not deal with it, and therein lays the inescapable responsibility, and the inescapable opportunity:

The right choice for your child will almost always be the right choice for you.

Along this road less traveled, you will always have choices. Strike a balance. Listen to your inner voice. Time is on your side. Your child loves you and needs you.

You can do this.

Adapted from The Autism Trail Guide: Postcards from the Road Less Traveled (2007, Future Horizons)

© 2009 Ellen Notbohm

Please contact the author for permission to reproduce in any way, including re-posting on the Internet.

Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, Ten Things Your Student with Autism Wishes You Knew, and The Autism Trail Guide: Postcards from the Road Less Traveled, all ForeWord Book of the Year finalists. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to Healing. Her work has appeared in numerous publications and websites around the world. To contact Ellen or explore her work, please visit www.ellennotbohm.com .