Square One Publishers
6.0 X 9.0 in
FAMILY & RELATIONSHIPS / Autism Spectrum Disorders
$16.95 Paperback (Trade paperback (US))
Robert J. Stevens
Catherine E. Stevens, MS
Diagnosed with attention deficit hyperactivity disorder, oppositional defiance disorder,
and pervasive developmental disorder in the early 1990s, Robert Stevens was an
exceptionally intelligent child who could not function in a mainstream environment.
Being the “problem child” of every play group, sports league, and extracurricular activity
he joined, Robert had no friends, no internal means of self-control, no “off switch,”
and—as his parents, Robert and Catherine Stevens, were warned—perhaps no real
future. Thinking it for the best, Robert’s parents did what the experts told them to do.
Despite having a remarkably high IQ, Robert was placed in a special education program,
under a psychiatrist’s care, and on several powerful medications, including Ritalin and
Prozac. Unfortunately, nothing worked quite as intended, and Robert suffered from nearly
every side effect these drugs had to offer.
Robert’s parents saw they were losing him. Witnesses to Robert’s drastic mood swings
and anxious displays, they did not know whether they were seeing their son or the
results of the medications he was taking. While initially helpful, the special education
class began to create its own world of problems, with Robert taking a step backwards for
each step forward. Desperate, the Stevens family turned to holistic therapies. Amazingly,
Robert began to show improvement. Wondering why their son’s doctors had discouraged
such strategies, Robert and Catherine started researching new approaches on their own.
Using nontraditional approaches, Robert was found. By third grade, he was off all
medications, attending a mainstream school, making friends, and simply being himself.
Finding Robert chronicles one family’s journey through the world of developmental
disorders. It depicts the struggles faced, examines the decisions made, and offers a
thorough analysis of the therapies utilized. Amid sadness and confusion, with strength
and resolve, Robert and Catherine regained their son and undertook a mission to change
the way we look at these conditions.
"Recommended for all parents of children with ADHD, ODD, autism spectrum disorders, or other behavioral conditions, as well as educators who specialize in those areas." — Library Journal
Robert J. Stevens is a graduate of Brown University and New York University School of Law. Inspired by his
son, Robert became an educational consultant in 1998. While helping to shape and refine various curricula
for learning centers and in-school programs, Robert has accumulated thousands of hours of hands-on
experience with children struggling in school. Along with other educational and developmental experts,
Robert created the Spark Development & Learning Program for children with attention, learning, and
Catherine E. Stevens, MS, received her BA in biology from Boston University and her BS in
cardiorespiratory technology from Stony Brook University. After seeing the positive impact dietary and
nutritional intervention had upon her son, she returned to college for her master’s degree in clinical
nutrition from New York Institute of Technology. In addition to her work as a cardiac catheterization
technologist at North Shore Long Island Jewish Medical Center, Catherine specializes in working with
children who demonstrate learning, attention, and behavioral issues. She resides with her husband, Robert, in Garden City South, New York.
Table of contents
1. There Is Nothing Wrong with Robert
2. Coming to a Head
3. Trouble at Home
4. There Is Something Wrong with Robert
5. Special Education
6. More Trouble at Home
7. Robert and Ritalin
8. A New Diagnosis
9. Chocolate-Covered Prozac
10. Deeper and Deeper
11. Enough Is Enough
12. Another Therapy, Another Breakthrough
13. The Right School
14. What We Learned
Appendix A. What You Should Know
Appendix B. Resources
Appendix C. References
About the Authors
Introduction or preface
We were nervous. It was early November and time for the first parent-teacher conference of the school year. Tina and I were meeting our son’s fifth-grade teacher to discuss his progress. I suspect that for most parents, parent-teacher conferences are fairly routine, but Robert had just been skipped a grade—from third to fifth—and in this challenging private school, we worried whether he was overwhelmed as an “upper.” Could he keep up with the demanding pace of instruction? How was he handling the increased workload? His homework had grown greater in both difficulty and length. He was completing his work in a reasonable time and without too much coaxing from us, but we wondered how he well he was doing in the classroom.
We worried about his emotional state as well. He had not yet celebrated his tenth birthday and was now the youngest child in his class. Moreover, skipping a grade had separated him from his fourth-grade friends. Was his behavior as expected? Was he making friends with the other fifth-graders? Was he happy? As we prepared to meet Mrs. Winkler-Brogan—an intelligent, quiet woman whose calming temperament complemented our son’s high-energy and intense personality—my thoughts slipped back to previous teacher-conferences. Would this one be any different?
She began by telling us of Robert’s strengths. He was, as we knew, highly intelligent. He kept up with the work. He participated in the class discussions, and many times his comments were “pretty amazing.” Academically, he was doing quite well. He even got an A+ on his very first book report.
“Was he paying attention?” we asked.
“Yes,” she replied, although she noted that she let Robert draw during lessons. “I spot check him to make sure he’s listening, and he’s always right with us.”
“Is he making friends?” we asked.
She admitted that Robert missed the children from last year. “He seeks them out at lunch and recess.” But she noted that Robert got along well with the children in his present class. “They include Robert in their activities and some of the girls in the class seem to be keeping an eye on him.” I smiled. “In fact,” she said, “I noticed that, because of Robert, Robert’s fourth-grade friends are starting to play with the fifth-grade kids in Robert’s class.” So far, so good.
“I also want to address some things I think Robert needs to work on.”
Ah, here it comes.
“Robert really doesn’t like to write. It’s a struggle to get the work out of him. I know he’s got the ideas in his head, but getting him to put those thoughts down on paper is rough.”
Yes, we knew about that, and we were working on it. He worked better when he was able to use a word processor. The school gave all the “upper” students access to a portable one, and we immediately took advantage of the opportunity. Robert also used our home computer for word processing. Finally, we had made arrangements for another teacher at the school to tutor Robert in writing.
“Also,” the teacher added, “he’s very disorganized. He needs to write down his assignments and keep his books and homework better.”
No argument from us there. We agreed to give him extra folders, and to review his assignments with him.
“What else?” we asked.
“That’s it,” she said.
“That’s it?” we asked in disbelief.
“Yes, that’s it. I am very pleased with Robert’s progress this year. He’s doing just fine.”
We then spoke to his Spanish teacher. She raved about how well Robert was doing in her class. The school director, Ida Edelman, gave us a similar report, remarking how happy she was with Robert’s adjustment and progress. We were out of there in less than twenty minutes. I turned to Tina, “Did you ever think you’d hear ‘pays attention’ and ‘Robert’ in the same sentence?”
She was still shaking her head in disbelief. “Wow” was all she could manage.
I thought about Robert’s other activities—ice hockey, piano, tennis, and karate. He was a busy little kid, but he was really starting to come into his own on all fronts.
The year progressed. My newly adopted career as a director of a small learning center was in full swing. Tina continued her part-time work as a catheterization lab technologist, and Robert and his sister, Kat, were joined by a new baby brother, Matthew. Before we knew it, “moving up day” at school had arrived.
We attended the ceremony, complete with the pomp and circumstance appropriate to the occasion. Afterwards, we met with Robert’s teachers one last time before summer vacation. Mrs. Winkler-Brogan told us of his “wonderful growth” during the year and again commented on his “amazing” contributions to the class. Robert’s Spanish teacher could not say enough about his enthusiasm. The art teacher bragged about Robert’s projects, telling us how creative he was, how his work was some of the very best, and how Robert’s classmates had come to respect his artistic talents. His writing tutor told us how Robert’s work had become so much more intricate and expressive. She couldn’t believe the progress he had made from the first time they had met. Mrs. Edelman summed it up when she stated that Robert had had a “truly wonderful year.” We couldn’t have been more proud of him.
I know what you must be thinking. “What’s the big deal? You’ve got a kid who’s doing well in school and has an active agenda of extracurricular activities. So what?”
Consider this. By the age of four, Robert had been asked to leave a playgroup, nursery school, and a tee-ball clinic. He was a complete misfit in a skating program of four- and five-year-olds, and was unable to make friends. He couldn't sit still, and he couldn't finish anything. Tina could barely control him, and I was only marginally better at the task. And again, this was all by the age of four.
Before the age of five, Robert had been formally diagnosed with attention deficit hyperactivity disorder, possibly coupled with oppositional defiance disorder. The terms Tourette syndrome, Asperger syndrome, and dyspraxia (also known as developmental coordination disorder) would be bandied about by those who worked with Robert. By the time he was six, pervasive developmental disorder had been formally added to the list of diagnoses.
At the age of eight, clumsy and apparently bereft of any athletic ability whatsoever, he could not catch a ball thrown to him from a distance of three feet, hit a baseball, or track any object in motion. Doctors, teachers, and other professionals used words like “emotionally disturbed,” “other health impaired,” and “anxious and extremely fragile” to describe our son. He had underwent years of special education, complete with a one-to-one aide, behavior modification, individual and group counseling, and multiple drug therapy, including the use of such psychotropic drugs as Prozac, Ritalin, Dexedrine, and Luvox. Mainstream public schooling was out of the question, and there wasn’t a private school near us that would even consider accepting him. No one was sure whether Robert had a future.
That is how it all began. You may be wondering how Robert got from “impaired” to that glowing parent-teacher conference I mentioned earlier. As you will learn, it was an amazing journey of twists, turns, and false steps—a journey that, in the end, was worth it.
This book is not a textbook about children with emotional or psychological problems. Nor is it a guide to counseling, drug treatment, or nonmedical therapy. By anyone’s standards, however, Robert made remarkable breakthroughs utilizing the treatments and methodologies described in these pages. While both Tina and I have worked extensively with children diagnosed with these problems, we are in no way offering blanket medical or dietary advice. While it is heartening to note that many of the approaches we utilized years ago are now being embraced by more and more medical professionals, we respectfully refer those interested in pursuing alternative courses of action to knowledgeable practitioners. Every child is different, and therapies have to be tailored accordingly.
Through these pages, we wish only to spread the word and share relevant information and research. Yes, you can certainly view this book as one that deals with autism spectrum disorder, the issues that go along with raising a child with such a diagnosis, and the potential of recovery, but I hope you think of it as much more. This is really a story about fighting the good fight and making a difference. Most importantly, it’s about learning not to give up on something if you really believe in it. Robert is a testament to this truth.
This book focuses mainly on the story of my family. It begins with Robert’s descent—his issues, his multiple diagnoses (which varied depending upon the particular professional with whom we met), our experiences with the medical treatments that we tried, and the ways in which everything—from Robert’s condition to our family life—seemed to spiral ever downward. Despite what we believed to be obvious problems, our personal observations and concerns were continually discounted or ignored by those who worked with Robert. In fact, when we actually had the temerity to question Robert’s treatment, we were often subjected to what I can best describe as plain old bullying—not only by medical professionals but also by teachers, and, most surprisingly, by other parents of special needs children.
Eventually, one can take only so much. Tina and I took matters into our own hands. Completing our own research, consulting alternative practitioners, and trying new therapies, we saw an incredible change in Robert. Of course, some approaches worked better than others, but the fact is, it was the combination of our nonconventional efforts that brought about the miracle we see every day in our son.
The story is true, and told in a chronological format. It is a story of life experiences, of what was good and what was bad, of what worked and what didn't, of the decisions and problems we addressed—the stuff every parent with a child with special needs should be aware of and expect, the stuff about which none of the experts ever really tells you. Ours was a journey filled with choices that took us in different directions to different destinations. Of course, you know, it's not about the destination but rather the trip itself.
After detailing our story, this book explains what we learned through our research and experience. It is information about which every parent should know. The appendix outlines the alternative theories in connection with learning, attention, and behavioral disorders, the treatments we attempted in regard to our son, as well as a great deal of research supporting these ideas.
Yes, we believe ASD can be treated. Perhaps more importantly, we believe it can be prevented. Now, will engaging in the remediation therapies or taking the types of preventive action described herein prevent or correct every instance of learning, attention, or behavioral disorder? Of course not. But that is no reason not to try, especially given the staggering number of children and families faced with such issues. Even if these methodologies are effective only some of the time, the number of positive results would be well worth the effort. Indeed, saving one child would be worth the effort.
At the very least, it appears that a little preventive action could greatly lessen the incidence and severity of these disorders. If we only knew then what we do now, our son’s life– our lives–might have been very different. It is my deepest wish that you benefit from our story.
One last note before we begin. While I often use the word “I” throughout this book, this is a story of an entire family’s struggles and efforts, and I hope I have honored the experience of each and every member of my family in these pages.