Raising a Child with Autism: TWO PARENTS’ reflections
A review essay by John Clifton
When Snow Turns to Rain: One Family’s Struggle to Solve the Riddle of Autism (USA, 1993) by Craig Schulze and Growing Up Severely Autistic: They Call Me Gabriel (Jessica Kingsley, 2000) by Kate Rankin are two fascinating books about raising a child with Autism. They are both fine additions to the body of works that includes Josh Greenberg’s A Child Called Noah, Son Rise by Barry Kaufman and The Siege by Clara Claiborne Park. The earliest work of this sort that I know of is Itard’s The Wild Boy of Aveyron published in the early nineteenth century. Itard was Victor’s caregiver and educator. Today there is speculation that the naked and apparently uncivilized child found wandering in a forest in France was autistic and not just abandoned or lost and living in a Rousseauian state of nature. Another work of interest in this area that stands chronologically in between is the published diary of Dawn Powell. Powell was a best-selling novelist of the forties and fifties who, when she wasn’t writing some of the most brilliant and scorchingly satirical novels of her time, mothered and raised a son who is now presumed to have had Autism. Like Schulze, she managed to afford a residential educational setting for Joseph, but one wonders at the options Powell would have faced regarding such facilities given the times. While her diary is not devoted mostly to her life as lived in relation to her son’s Autism, her references to his tantrums, her worries and his trips to Bellevue and other hospitals provide glimpses into life with Autism at a time when the term was just beginning to be associated with the syndrome we have come to know.
Schulze opens his book with a portrait of his son Jordon as he was before the onset of autistic symptoms. Jordon is the Schulzes’ second son and his above-average development appeared to presage a happy future. Schulze includes some of his diary entries from that time and describes feeling that “our lives are so good that it scares us–seems like something has to go wrong–we love our little boy so much.” He is proud of Jordon’s apparent achievement of intellectual milestones and this isn’t surprising from a man who has made education his life and holds a M.Ed. in Early Childhood Education and a Ph.D. in Human Development. He frequently ponders the state of his spiritual growth by studying great works of the Hindu and Buddhist traditions. There is mention of Thoreau and T.S.Eliot and of a great love for books. His disappointment when Jordon’s development begins to stagnate is palpable: “So many consecutive sad days that I’ve been unable to write. We live in a cloud, with knots in our throats, and again we cry frequently. Jordon is unhappy, alone, and making no progress.”
Jordon Schulze began to manifest symptoms of Autism when he was two and a half. At first, drug therapies were employed but soon Schulze discovered that “drugs won’t be our ticket out of Hell.” By the time Jordon was three, the Schulzes had resolved to enrol themselves and Jordon in a two-week stay at the Options Institute owned and run by Barry and Suzy Kaufman. Barry Kaufman is the author of Son Rise and The Miracle Continues and his family’s amazing success in raising and educating their son, Raun, inspires the Schulzes to seek guidance at a farm-like retreat in Connecticut. The cost in 1985 was $9,000, and the Options Institute was just the beginning of what turned out to be a very expensive attempt to provide Jordon with what his parents regarded as the best possible education. Schulze is somewhat skeptical of the “get in touch with your feelings” approach: “Does it necessarily follow that responding to an unending string of questions from someone you have just met will put you sufficiently at ease to put you in a happy frame of mind? But even if it’s true that I can be made a happier, less judgmental person through this Socratic self-examination process, does that mean that Jordon will, or even can, choose to respond to this loving treatment by emerging from his Autism?”
The Schulzes tried to make the best of the program and resolved to follow through by initiating a similar program at home. Since Jordon accompanied them to the Institute and was observed to participate in his own portion of the activities designed for children with Autism, the Schulzes had some idea about what was involved. Options was is a demanding program which required in their case the help of 16 volunteer and paid staff, some of whom were high school students who could not always be relied upon to show up. Schulze began to wear thin: “Imagine yourself a combination cheerleader, adolescent counselor, housewife, and volunteer coordinator twelve hours a day…This is the stuff of burn-out.”
Months later, the Schulzes came to the conclusion that the program was not working and they began to turn their attention to the Higashi school in Japan. After an investigative trip to Tokyo, they enrolled Jordon there and for a year they tried to follow his progress through videotapes sent to their home. Schulze believed that Jordon looked sad and the family was relieved when a Higashi school was founded in Boston and Jordon could be enrolled there. By this point, Jordon was four and the costs for his education had reached $25-30,000 per year. The Schulzes began to apply for government subsidies but were initially rebuffed. Finally, after taking legal action, they received a settlement that is not disclosed due to an agreement about confidentiality. Sometimes the Higashi school appeared to have good results and Schulze refused to believe that Jordon’s education was not important. To be closer to Jordon, the family decided to move to Massachusetts and had to make decisions about their respective careers. Schulze completed his doctorate and then relocated. Jill managed to work out a deal with her law office so that she could do much of her work at home. For several months, Schulze took on the role of homemaker and Jordon was able to spend more time with the family. Eventually, setbacks and disappointments about Jordon’s progress at Higashi resulted in the decision to give Jordon more time at home. Suddenly the Schulzes began to see “fairly substantial changes.” Schulze speculated that these changes might have been brought about by any or one of several factors like age, living at home, or vitamin therapy. In any case, with Jordon being more cooperative and his spitting, biting and hitting better under control, the Schulzes were thrilled: “Whatever the reason, his getting somewhat better comes at a critical time, for his continued stagnation could well have pushed us over the edge.”
By the end of the book, Jordon is nine. Schulze had temporarily taken a lower-paying job with the Higashi School as a grant writer, but planned to return to his job as a school administrator in Baltimore. The family continued to experience a roller coaster of successes and setbacks. When Jordon experienced a “period of severe tantrums, self-abuse, and aggression that lasts about eight weeks”, Schulze came to realize that “there are substantial limitations to what we can know about him.”
When Snow Turns to Rain is a moving and informative account of one man and his family’s quest to provide the best care and education for a child with Autism. Schulze is an introspective and sometimes poetic writer who, though often despairing of a solution to his problems, can describe his situation and that of Jordon in a way that is both terrifying and beautiful. Remembering Jordon’s progress before the onset of Autism, Schulze writes, “A tiny light, perhaps from the Perseid meteor shower, flickers in the corner of the sky and dies. Here is a perfect metaphor for Jordon. In the backdrop of an empty sky, he moved so brilliantly and then passed from the scene in an instant. Twinkle twinkle little star, now I wonder where you are.” As well as being a fine account of some of Autism’s more devastating effects, the book documents Schulze’s profound spiritual journey from a wilderness of grief and disillusionment to, for the time being, sustaining insight. By the end of the book, Schulze has had his vision: “I would come to understand through this trial that pinning my hopes for happiness on Jordon’s recovery or on any particular outcome for my life was totally absurd. If the empyrean was to be found at all, it would be located deep within myself, in a core of acceptance and love of life, regardless of its outer dress.”
In Growing Up Autistic, mother, homemaker and occasional writer of articles on Autism for the journal of the National Autistic Society (UK), Kate Rankin, tells us that by the time her son, Gabriel, moved out of the family home and into a residential-educational facility, he was seventeen. By the end of her book, Rankin has been dealing with Autism for nearly twice as long as the Schulzes. Rankin’s husband, Neil, was a carpenter and the family resided near the “high street” in an English town. The Rankins had two other children, one older than Gabriel and one younger. Rankin tells us nothing about her education but it appears that she was not someone who was able to take time away from her busy life to attain academic credentials. Although she was well aware of the Options Institute and the Higashi schools, she was also equally aware of their costs: “If we’d had 30,000 [pounds] or more to spare I suppose we could have sent him to the Higashi school for some Daily Life Therapy for a year” (p.176). Unfortunately, neither these possibilities nor others presented realistic options.
Still, Rankin is well informed and provides clear and concise accounts of these and other approaches to childhood Autism. She writes: “The idea behind the Option method is that by making interaction a pleasurable activity, by making people more attractive than obsessive activities, the child will be encouraged to join ‘our world’ ” (p.152). Regarding the Higashi schools, she explains that they offer “almost military style behaviour control and extensive physical exercise, the idea being that strict routine gives security to these very fearful children and that lots of vigorous physical activity burns up destructive energy” (p.150). Rankin also touches upon the views of Lovaas, Bettelheim, Donna Williams and Temple Grandin. Regarding drug therapies, the Rankins seriously considered them but, in consultation with their doctor, decided that the side effects would outweigh the benefits. At the same time, Rankin does not rule out the use of medications altogether. Gabriel took medication for his epilepsy and reference is made to Temple Grandin’s use of an anti-depressant.
Like When Snow Turns to Rain, Growing Up Autistic vividly portrays many of the everyday experiences that make up a large part of the lives of some parents of children with Autism. Without the luxury of a residential-educational facility, the Rankins became daily more familiar with dangerous and disturbing behaviours: “Gabriel gets more and more furious, pinching his forehead and the back of his neck and letting out bellows of rage as he charges back and forth. He catches sight of a small rolling pin, picks it up and hits his head with it. I try to stay calm and quietly remove a saucepan of hot food from the stove, remembering an occasion not so long ago when in a similar mood he dashed a full pan of hot soup to the floor and over his feet, burning them quite badly” (p.43). Rankin describes several other incidents: he scaled the yard fence and wandered into traffic; he poured washing up liquid into his eyes; and once, after many excursions onto the roofs of the family’s home and that of the neighbours, he crashed through next door and narrowly missed a glass table and a television.
By the time Gabriel was thirteen, he had learned to “wee” in the toilet. While Rankin is pleased to announce this as a real accomplishment, she also expresses continued frustration at Gabriel’s failure to learn the same skill in regard to his bowels. Several passages in a chapter entitled “Shit Happens” are devoted to this matter. Sometimes he smeared the walls and carpets with feces. Finally, after one more ill-fated attempt at toilet-training resulted in severe constipation, “he has reached a state–there is no way to put this delicately–where he oozes shit more or less continuously” (p.177). Rankin estimates the number of clean-ups in the seventeen years that Gabriel lived with his family at eighteen thousand. She was still asking herself whether it was a question of “can’t” or “won’t”.
On the issue of corporal punishment, Rankin expresses Neil’s and her view that while small children understand “smacks”, these must be meted out judiciously and not in anger. Although Gabriel frequently appeared to be indifferent to pain, the Rankins did “smack” him and often used a wooden spoon. Eventually, the mere showing of the spoon to Gabriel was enough to get his behaviour under control. Rankin is candid about one incident when she “snapped” and, enraged by Gabriel’s refusal to settle for the night, she bit him. She confesses to a feeling of “everlasting shame.”
Sometimes Rankin wondered if she loved her son at all and, with a frankness that is one of the book’s chief virtues, she admits that “I felt something closer to hate than love. How often I had wished that this had never happened and I didn’t have to endure such turmoil. Dreadful thoughts sometimes crept into my mind, like those of a mother of a Down’s syndrome baby I knew who had written: ‘There were times when I would return to his cot hoping that the breath of life had gone from him and we could resume our normal lives’ ” (p.63).
After years of worry about the family’s ability to ensure Gabriel’s safety, and after the death of her adored husband Neil in a bicycle accident, Rankin began to feel desperate and begged seemingly indifferent social service agencies for additional money for preventative measures. Gabriel was seventeen when a suitable residential-educational facility was found. Although Rankin worried about the possibility of abuse in such facilities, she was also relieved to think (perhaps over sanguinely) that institutional care for people like Gabriel has improved “immeasurably” in recent years.
In the book’s final pages, like Schulze, Rankin searches for a summing up and, as it turns out, she has been on a sort of spiritual journey herself. From being a mother who had to admit she was often feeling more hate than love for her child, and who found it impossible to see him as a “blessing”, she ends with a vision of her own. She tells us that Gabriel has touched the lives of many people and they have extended their kindness to him. He has taught them about “patience, tolerance, different perspectives and new ways of looking at others and themselves…he has generated an enormous amount of unconditional love.” When she thinks back to when asked if she thought that having a child like Gabriel was a “blessing”, she concludes, “Now I think I have some small idea of what that means and I’m grateful.”
Growing Up Severely Autistic is an often stark and realistic portrayal of life with a child who has profound behavioural problems. Rankin has written a plainspoken and courageous account. It should prove to be an invaluable resource to other parents, siblings, caregivers and educators. Yet, on the issue of corporal punishment, one wishes that Rankin had said more. She confesses to having snapped and bitten Gabriel. Isn’t the existence of this possibility one of the reasons why educators have counseled against corporal punishment? Once it is okay to “smack”, it becomes more likely that the adult might “go too far”? And what of corporal punishment in a residential or educational setting? Rankin worried that Gabriel’s bruises and scrapes might have originated at school. She omits to mention that teachers are sometimes wondering too.
The concluding insights reached by the two books considered here are interestingly different. Schulze seems to achieve a sort of Vedantic release from the vicissitudes of life in general through an insight about the interior source of human happiness and the ultimate irrelevance of results in the material world.. For her part, Rankin finds happiness in the joys of human interaction. Despite his problems, her son has made a wonderful difference in the lives of the people around him. But whatever philosophical differences may separate them, both writers seem to arrive at a place that stresses love and acceptance. Both will offer hope to others who are still confused and stumbling in the dark.
How to Obtain these Books:
You may have to borrow When Snow Turns to Rain from your library.
Growing Up Severely Autistic is available from Irwin Publishing, Canadian agent for important titles in Autism and special needs and mental health generally such as those published by Jessica Kingsley and Paul H. Brookes Publishing, several of which have been reviewed by OAARSN. The Irwin Book Club offers 20 % off various professional titles. www.irwinpublishing.com