New Paths, New Futures: Achieving Function and Inclusion

By Gene Hurwin, MA, OTR/L

The generation of parents-to-be who grew up in the 1950s and 60s were subjected to a style of child-rearing that did not, for the most part, honor the individuality of the child. Mainstream parenting convention of the time advised parents to view their child as an offshoot of themselves and provide the child (and thereby the family) with a strong, consistent grounding in morality and behavioral choices. As a consequence, a majority of children grew up with a strict sense of rules, a code of “right” and “wrong” as defined by the omnipotent parents and a society that had just emerged from a World War or the Korean War (1950s and 60s parents, respectively). Children were never consulted, never asked if a certain discipline was serving them. Communication between adults and children existed within strictly prescribed boundaries.

In the absence of the parental attention and affection present in a more “hands-on” parenting style, many of these children grew into adults who felt a severe emotional disconnect with their parents. In response, when they became parents themselves, their goals became to honor the child, to clearly and openly “see” the child as individual, to respect what the child needed, and to maintain a line of communication which allowed the child to provide feedback about his thoughts and feelings.

It was with this generation of parents that the words of Benjamin Spock, more commonly known as “Dr. Spock,” resonated forcefully. His psychoanalysis-based approach to child-rearing took the child’s individuality into account in a way that flowed against the mainstream current when he published his first book, Baby and Child Care, in 1946. However, by the time the pendulum started to swing in the opposite direction, his book had become an all-time bestseller, inspiring parents everywhere to “relax,” “take it easy,” and trust their instincts.

Dr. Spock’s enthusiastic readers were a generation of reactionary (albeit, justifiably) parents who were raising their children opposite of how they had been raised. Many of them did not heed his advice to “set limits,” and they certainly did not take into account the fact that children (even more so those with special needs) are born without any preconceived notion of what will serve them best in the world. To expect that children be able to dictate the parameters of learning or define the experience necessary to grow up in the world as successfully as possible is imposing an expectation which cannot be fulfilled.

Acknowledging the child’s unpreparedness to make those judgments does not necessarily involve a return to the child-rearing tactics of the 50s and 60s, however. Rather, it suggests the need for a synthesis of information. Honor the child, see the child’s individuality, and respect her essence and self; simultaneously, become the teacher/mentor/guide able to help the child perceive and understand the realities of the world and provide the tools she will need to be successful in this or any environment.

The ability to recognize a child’s individuality, while at the same time setting parameters within which he can safely operate and learn, is as indispensable to the practice of pediatric occupational therapy as it is to parenting. The overall goal of therapeutic intervention must be to help the child attain the ability to pursue his “occupation” – to play and socialize as effectively as possible – and to provide the tools necessary for the child to accomplish this pursuit as efficiently as possible. While it is possible for the OT to design a treatment plan and define the therapies that will best serve the long-term attainment of the goal, the process through which the goal is reached will not necessarily address the immediate desires and/or needs of the child.

A stark and somewhat dramatic example of this approach (one that is seen all too frequently with children with disabilities) involves food as a reward for compliance. Starting this practice from childhood in an attempt to effect cooperation sets the child up for eventual failure leading him, as a teen, to continue to demand food both before and after demonstrating compliance. In many cases, by the age of 18 the young adult is obese, at-risk for stroke, capable of throwing an intense public meltdown, and a safety hazard to himself and others in public venues such as malls, movie theaters, and restaurants. By 25, due to frequent aggressive behavior, the adult is institutionalized. This is a distressing ending to what seems like a simple incentive-based approach and makes vividly clear the consequences of action versus inaction viewed in relationship to the child to adult continuum.

If the aforementioned goal of providing the child with the tools to play and socialize effectively is to be accomplished, the relationship between the therapist and child must be clear and consistent: child/student to adult/teacher. With this relationship firmly codified at the beginning of the therapeutic relationship, the child can develop her identity knowing (and feeling) that she is valued and given complete regard. Simultaneously, she will begin to grasp the reality of the macrocosm that exists outside her immediate environment, and understand the necessity of an imposed structure. When expected to deal with this structure on a “going-forward” basis, utilizing tools provided by the therapist and trusting that the boundaries established by the therapist will stand firm (and thus provide protection for the child from herself), the child will gain, through experiential learning, the understanding that she can and will be successful.

In order to be in the world, the autistic child must deal with imposed structures present at every turn. If the child is habituated to self-direction, the imposed structure becomes onerous and intolerable. It is the therapist’s responsibility to set the expectations appropriately and redirect the child’s effort towards successful inclusion in the larger world. A child who can demonstrate tolerance to structure is a safer child, a child that can be included rather than excluded.

It is important that this article not be perceived as an endorsement of a totalitarian mentality for children with special needs. Instead, it should be viewed as an encouragement to look at the times in which we live and grasp the socio-structural challenges present: hurricanes, earthquakes, gang culture, global warming, terrorism, AIDS, drugs, and more. Being in the world for the autistic individual is serious business.

The fairy-tale family structure of Ward, June, Wally, and Beaver was great in the 50s, but those days are no longer. John, Paul, George, and Ringo sang, “All you need is love” in the 60s, but love is not enough these days. If real success is to be achieved for the child with special needs in today’s world, it can only be through a symbiotic relationship between structure and love. In pursuit of the perfect symbiosis, pediatric occupational therapists are entrusted with a serious set of responsibilities: informed and enlightened by sensitivity, OTs must provide children with structure, train them to be safe by utilizing the tenets inherent to OT, and, most importantly, help them strive for independence within the structural dictates of the world of “now.” This world, while not utopian, is full of potential for both the therapist and the child. Recognizing the challenges of our world today, the potential for success these challenges present, and their own indispensable function in the special needs community will allow occupational therapists to make the difference they are capable of making and to create new paths and new futures for this millennium’s children.

Vacation Blues

By Mark Saleski

What's Going On Here?

Every summer, my wife and I partake of that great American tradition - the vacation. We pack up the Jeep, load in the dog, and head to our favorite getaway spot - a small town on the coast of Maine. Over those two weeks, that rental house becomes out new home as we make our best attempt at sloughing off the dead skin of the working, "responsible" life.

So what's the problem? Over the last couple of years, we've found that the end of vacation and the transition back to 'normal' life has caused what seems like an inordinate amount of grief. Should two grown adults feel sorrow verging on depression because of this? What's going on here? Does this happen to anybody else?

Causes: A First Pass

While trying to work my way through this situation, a couple of seemingly obvious causes surface: our attraction to this town as "The Perfect Place," and the yearly vacation as a marker for the passage of time.

Had the little coastal retreat become idealized in our minds as the perfect town? The place where nothing ever goes wrong? The ultimate buffer between us and the rest of our lives? No doubt, there is some truth in this idea. There's a reason we refer to these places "getaways." It has slowly dawned on me that this particular location, because we've been there so many times, has indeed become that place. The fictional Shangri-La.

Time passes us by (or sometimes: drags us along) and there's not a whole lot to be done about it. If things are going well, perhaps it's not a problem. There are times though, when the 365th day clicks by – again – and serves to do nothing more than remind us that we're not completely in control. That we, our loved ones, EVERYBODY – is headed in that same direction - and that maybe we should be making a little more haste, making those plans more of a reality.

The Reality

Though the reality of our situation does contain shades of the above elements, there are a couple of very concrete issues that bring on the vacation blues: my career difficulties and our epiphany about "community."

I've been writing software for almost 25 years. Like most careers, it's had its moments of fantastic reward as well as grief-inducing frustration. Writing has been a more recent vocation, one that has taken hold of me with surprising force. Now that I'm so heavily involved with it, I can't imagine doing anything else. Of course, this makes for a particular brand of cognitive dissonance. Two weeks on vacation go by during which I am nothing but a writer. That time passes and the reality is that I must go back to the world of networks and control systems. It doesn't feel quite right anymore, but what to do? What's the right thing to do when the community you've been a part of for so long leaves you with that "outside looking in" feeling?

Well, "community" can mean many different things. There are communities of place and communities of like minds. Our vacation spot is the most basic of communities, the small town. This year, we finally realized that this place's "small townness" plays a huge factor in our perceptions. Physically, we can walk anywhere. Nothing is more than ten easy minutes away. But convenience is not the issue. It's the feeling that we're a part of the town. Even though we are tourists, many of the town's residents become familiar - the mailman, that waitress, the clerk at the bookstore. This is an experience that's difficult to come by in suburbia, one that resonates with us to an alarming degree.

Outlook

We are certain that our tourist status will one day be erased - we will move to this town. One community problem solved. In the meantime, the career angst will continue. While it doesn't move me toward a solution, I take comfort in the fact that I'm not alone in my occupational ambivalence. I'll deal with the slow move toward a conclusion by imagining my future profession, by wrapping myself in the written word, and by looking forward to those two weeks on the coast...