By Ellen Notbohm
Ask any parent whose child has been identified with autism. It’s likely they will never forget the moment they first heard the word applied to their child. Some will have been forewarned. For others, the shock will be epic. For many, what follows will be a fog, and this is what it feels like: your focal point, the one you took for granted for so long, has been moved. And now you get to try to find it in that fog. Just try to pin the tail on this donkey.accommodations We know there will be doctors and therapists, special educators, diets, modifications and . But in those initial moments and days, we all asked the same question: what is the first thing I should do?
My stock answer, “keep breathing,” isn’t usually not met with enthusiasm. Something more profound is expected. And yet, isn’t breathing a matter of considerable importance? Breathing allows us to regroup, recharge and move forward. It can’t be separated from everything else a parent is faced with doing for their child with autism. It is the first thing that needs to happen.
My more substantive answer is that the first thing parents need to do is continue to see their child as just that—a whole child, not a baggie of broken parts. Not a fixer-upper project. I remind them their child is still the very same child they fell in love with at first sight. Autism is going to color their lives, in many ways unexpected, in many ways unwelcome. But a child’s autism cannot be allowed to stand alone as the sole means of defining him. In other words, the child is a whole person, and a whole person cannot be “unbundled.”
“Bundling” and “unbundling” are ultra-annoying buzz words that have become pervasive in business. If it wasn’t so annoying, it would be comical how some companies—cable television and telephone companies, notoriously—doggedly bundle services in hopes of persuading (and sometimes forcing) you to buy services you may not want or use. Meanwhile, other companies, most notoriously, the airlines, have just as doggedly unbundled services in order to wring every possible penny out of their customers. They present this money-extraction tactic as “choice” or “à la carte offerings.”
The late, unlamented No Child Left Behind law handed us the dictum that the only education that matters is a handful of core subjects wherein so-called achievement can be quantified within very narrow parameters. Without a doubt there are lawyers, politicians, businessmen and even parents who could argue persuasively that these subjects should be the only ones included in the definition of a free and appropriate education. Here’s a thought: Let’s save money by unbundling public education! Your tax dollar buys you reading and math. You can buy add-ons for an à la carte charge. Add-ons might include: history, geography, political science, economics, foreign language, literature, physical education, art, music, anything involving practical application of academic skills (vocational or “life” skills), anything involving the teaching of critical thinking or executive management (such as philosophy or study skills), accommodations or modifications for special education or English language learners, counseling (academic or personal).
Since socio-economic factors such as poverty, access to health care, housing and transportation will not be a consideration in the unbundling of school services, many more students will drop out, lessening the need for teaching and increasing the time that can be spent on testing. Now, now—squelch those doubts. Testing is what ensures that we are getting our money’s worth!
It all has a very creepy Orwellian feel to it, doesn’t it? It is just that pit-of-the-stomach quease that should hold parents in check should they feel themselves slipping into viewing their child with autism as a set of symptoms, a to-do list of repair tasks.
I’ve listened to a few parents sneer at me, saying that if I’m not intent on “fixing” my son, just what would I call all the lengths to which I’ve gone to help him? The hand-picked schools, the occupational therapy, the speech therapy, the dietary changes?
The first thing I call it is respect, and the second thing I call it is responsibility. Respect—for the person he is and for the fact that he experiences the world differently than I do, for the fact that his experience is much more difficult than mine, that he did not choose it and that he alone bears the ultimate burden of it. Responsibility—for the decision my husband and I made in bringing him into the world. When Mark and I married, we promised in front of an audience to love, honor and cherish each other. Why would we do less for our child?
But the most important thing I call it is education. The purpose of all education is to prepare our children to become productive, independent adults. For your child with autism, the path will be different than for the so-called typical child but the goal is the same. There are no shortcuts for any child. It is a long, patient process of introducing and reinforcing, creating relevance and accessibility to the plethora of knowledge in the plethora arenas that constitute a full life. If we unbundle that, we have unbundled the very humanity of the children entrusted to us.
The measures you take in educating your child may be identical to the actions you would pursue if your mindset were to “fix” him: the therapies, the school settings, the social activities. But it’s the attitude with which you undertake these activities that will reflect back to your child and determine whether he meets his challenges with optimism, confidence and healthy self-esteem, or with anxiety, depression, anger or shame. It’s the degree to which you allow his autism to dominate his life and the life of the family as a whole. Do you see his therapies as helping him become comfortable with his environment and himself, or do you see them as a means of squelching bothersome behavior that makes your life difficult? Do you see the accommodations you make for him as stepping stones to discovering and building upon strengths that will make him a more capable, self-sufficient person? Or are you unable to escape the thought of how they shrink the boundaries of your own life?
Many of us start out uncomfortable with placing the label of autism on our children. And yet most children arrive on the planet with a label: bundle of joy. If we were to unbundle our newborns in the cold light of fact, they would be more like bundles of poop, projectile vomiting, sleep deprivation, staggering amounts of laundry and a black hole of expense. That doesn’t seem to deter us. We still make the choice to be parents. For better or worse. We don’t let the poop define the child. We have confidence that in time and with instruction, he will become less helpless. Like 1001 Arabian Nights, each day we learn just enough of the story to make us want to get up the next day and find out what happens next.
We keep breathing.
© 2013 Ellen Notbohm www.ellennotbohm.com
Originally published in Autism Asperger’s Digest, November-December 2008
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Three-time ForeWord Book of the Year finalist Ellen Notbohm is author of one of the autism community’s most beloved books, Ten Things Every Child with Autism Wishes You Knew and three other award-winning books on autism. Her work has informed and delighted millions of readers worldwide in more than twenty languages. Read excerpts from all her books and sign up for her newsletter at www.ellennotbohm.com, https://www.facebook.com/ellennotbohm, https://twitter.com/EllenNotbohm