An Interview with Robbie Woliver:  Alphabet Children

Michael F. Shaughnessy - May 21, 2009
Senior Columnist EducationNews.org
Eastern New Mexico University
Portales, New Mexico

1) Robbie, you recently wrote a book about children with handicaps/exceptionalities/disabilities. First of all, what term do YOU prefer and why?

What I wrote about are disorders -- physical, developmental, neurobiological and psychological disorders. The terms you used describe the manifestations of these disorders, but you are correct -- some present as handicaps, while others are exceptional abilities.  

2) What led up to you writing this book?

My now-16-year-old daughter had some developmental issues when she was younger. So I had to do a lot of research to make sure she was getting the proper diagnoses, therapies and school services. Parents have to be advocates for their children. That's a main point in this book. I found that there were many misperceptions, misinformation and just plain lack of knowledge about certain disorders and their interconnectivity.

As a parent and investigative reporter by trade, I have been in research mode for this book for 15 years. At the Long Island Press, the newspaper where I am editor in chief, I started a series called "Our Children's Brains" (it has since evolved into "Our Children's Health") and it has been one of our most successful journalistic ventures. Parents from around the world have responded overwhelmingly. "That's my kid!" they would often say after reading about a particular disorder and discovering answers to long-held questions. The series went on to win many awards, and it became the mission at the Press. Several of the OCB stories were adapted into chapters in the book, and several book chapters were adapted into the newspaper series.    

3) What do you see as the main special education issues?

The biggest problem is the ongoing conflict between the child's need for services and the district's need to maintain a budget. Also many children are misdiagnosed or undiagnosed and they are not receiving the proper special ed modifications. Many educators do not really fully understand many of these disorders, and the children suffer. The most exciting reaction I've received about "Alphabet Kids" is the immense positive response from educators. They have to understand the subtle distinctions and connections between these disorders.

Another big special education problem is the follow-through with an IEP. Sometimes the best intentions fall through the cracks if a teacher doesn't follow through with everything on that IEP.  

4) In general, how good a job are we doing in terms of educating the general public?

Not very well, I think. Fortunately, there is a lot of money behind autism awareness groups like Autism Speaks, and they are certainly being very successful advocates. And since autism has so many concurrent issues, awareness is spreading for those conditions as well. There are many disorders, and thousands of awareness groups. That's why I thought a comprehensive book like "Alphabet Kids" would serves as a general road map for parents, educators, medical professionals and the general public to understand these children and their issues. 

5) Some abbreviations are deceptive. L.D. in my mind stands for learning disability, but those kids have a plethora of other problems- lack of organization, poor time management skills, low frustration tolerance....do we need a better system than just a few initials?

You hit the nail on the head. These disorders almost always have concurrent issues. I say in the book, if a doctor only diagnoses only one of these Alphabet Disorders -- go to another doctor, because there is bound to be other underlying problems. And I'm also glad you mentioned LDs, or learning disabilities, because they are almost always misdiagnosed, under-diagnosed or not diagnosed at all. An LD can be as simple as dyslexia or as complicated as auditory processing disorder (APD) or it can even be a sign of something more serious like Fragile X Syndrome in girls. We don't need a better classifying system, we need a more holistic approach by medical professionals.     

6) It seems that we are flooded with initials. I have to go to an IEP to  get FAPE for a kid with L.D. in the LRE and he or she had LBW and has LFT and we have to get this done ASAP. Am I crazy or what?

Not crazy, these initials and acronyms are an easy way to classify disorders and services. If a child needs 20 different initial Alphabet Disorders for docs and teachers to better understand him, or her, then great.  

7) I am encountering more and more initials. BCH--Benign Congenital Hypotonia is a low incidence condition- but I am the only one who has encountered this?

Hypotonia is a very common symptom, and a symptom of many disorders. And has been for a long time. Some of the disorders are minor, while others could be much more serious. There are more initialed disorders, but that's because the medical community is discovering more subtleties in disorders. 

I tell this story in the introduction to the book. When I first announced that I was writing this book, about three years ago, my daughter made a suggestion of her own, for her then annoying teen-aged brother: TNT or explosive personality disorder. I laughed. "Great joke," I said to her. A few weeks later, while doing some research, what did I find? EPD: explosive personality disorder.

Again, if these initials help diagnose a child then I'm all for it. These are not frivolous labelings. This is not just about being "sad" or "blue" or a picky eater or an unsociable child, this is about a child who has some condition that negatively affects him or her in numerous life situations -- home, school, etc. These disorders have stringent requirements for diagnosis.   

8) In addition to initials and alphabets we have CHARGE and USHER's which seem to be increasing. Are these names in your book?

No. I obviously couldn't include everything. I wanted a good overview of both common and rare disorders, because the common ones are often misunderstood, and the rare ones are often misdiagnosed and are believed to be more prevalent than officially noted. 

9) A kid down the street has Williams Syndrome and I know of another child with Hunter's. Are all of these low incidence conditions becoming more prevalent?

That's the million dollar question. Theories abound: vaccines, toxins in food, pesticides, genetic disposition.... My theory? They're all factors. How can they not be? It's just common sense. It's also a growing number of immune system-impaired parents having children together, and producing a greater number of immune system-impaired kids. A child needs a predisposition for some of these things to be harmful.
On my street alone, out of 10 homes, 6 kids have developmental problems. Is it that we live on a land that was once a potato farm that used pesticides? Is it the vaccines these kids received? Is it the processed food we ingest? Yes. 

10) What have I neglected to ask?

The most important thing about Alphabet Kids is thoroughly understanding our children's specific disorders and being aware of the interconnectedness of these disorders. Parents have to become better informed (and in many cases they become more informed than the medical professionals with whom they are working) and they must advocate for their children with their doctors and their schools.

I appreciate your insightful and thoughtful questions.