Robbie Woliver’s newest book, “Alphabet Kids: From ADD To Zellweger Syndrome: A Guide to Developmental, Neurobiological and Psychological Disorders for Parents and Professionals,” is an answer to what he sees as the most common mistake when it comes to diagnosing and treating a host of disorders in children: identifying and treating only one disorder, when the child likely has several interconnected “alphabet” disorders.
Here, Woliver talks about his inspiration for the book, his fascinating research, and his newest special needs-related endeavor.
How did you decide to write “Alphabet Kids”?
When my daughter was about a year and a half old, she had some developmental issues that we were concerned with, and we weren’t getting the kind of answers that we needed. I began doing my own research and became fascinated with the issues and disorders I was learning about. I was the editor of the Long Island Press, and I started writing articles for the newspaper on various kinds of disorders in kids. The first article was about auditory processing disorder, which is a very common disorder that is often misdiagnosed or not diagnosed at all. The response we got to the story was just overwhelming. I thought people needed this information and I wanted to write the kind of book I could have used when we first started with my daughter.
Why are alphabet disorders so important to talk about right now?
When I first started telling my family that I was interested in writing a book, my daughter said she wanted to contribute a disorder for her thenvery-annoying brother. It was “Explosive Personality Disorder,” or “TNT.” Everybody laughed and thought it was very funny. Two weeks after that in my research what do I come across? Explosive Personality Disorder! There are names for all sorts of behaviors. And once these behaviors start negatively affecting the important aspects of daily life—home, school and social interaction—that’s when it becomes a serious problem. My feeling is that, if being labeled with 26 different alphabet disorders from A to Z helps a child obtain needed intervention services, then it’s worth it.
Is it true that if a child is diagnosed with one of these disorders, he or she is likely to have others?
A lot of kids are being misdiagnosed or being diagnosed with a single disorder when they have many. I recommend to parents that if their doctor gives them one diagnosis, they should go to another doctor because that diagnosis is probably wrong. A really simple example: If you go to a doctor and they diagnose your child with OCD, and
your child has these obsessions and compulsions, don’t you think your
child is going to have anxiety as well? So right there,
there’s a second disorder. Many doctors “ghettoize” these diagnoses to
just their field and they don’t look at the broader picture.
How did you decide which
disorders to include in the book?
I picked the disorders for many reasons. I
wanted it to be a mix of common, misdiagnosed, stereotyped and rare
disorders.
What
kind of reader did you envision for the book?
I wrote this book
first for parents. I wanted a book that was easy to read and understand,
but didn’t talk down to them. I wanted a book that parents could use as
a road map. But I get so many teachers, parents and doctors who are
buying the book.
What
has been the most memorable feedback you’ve received from a reader?
I had a woman who came to
me after a reading who just started crying. She said the book helped her
to get a proper diagnosis for her child.
How has the medical community responded to
the book?
One
of the first great moments with the book was when the head of autism
research at Cambridge University, the NYU Child Study Center, and the
former director of the National Institute of Mental Health all came out
and supported this book.
What were some of the most fascinating disorders that you
learned about?
Cri du Chat was one. It means “cry of the cat” (referring to the
characteristic cry of infants affected by the syndrome), and it’s really
devastating. I was very lucky to connect with a woman in Australia who
ran the Cri du Chat Society there, and she put me in touch with a lot of
people. Her daughter is suffering from this disease. I am also
fascinated by the special interests of autistic kids—just how they are
interested in logos of movie companies or they know the dates that every
single Britney Spears record was put out.
In February, a court ruling declared that
there is no autism-vaccine link. What are your thoughts?
I don’t take sides
in the book. I give every kind of possible cause for these disorders.
Personally, it makes common sense that these are caused by pesticides,
toxins, preservatives in food, and even certain types of foods.
I’m
not sold that it’s not vaccines. The one thing that almost everyone I
spoke to agrees with is that the child needs some form of predisposition
for the disorder.
Where
did you get the idea to start your non-profit organization, “Your Day
Away”?
One
night we were finishing off a seven-hour study session with my daughter,
and I just turned to my wife and said, “Oh gosh, we need a day away.” I
realized that I was complaining about seven hours of study. I can’t
even imagine what it’s like for parents who care for children that they
just can’t leave for a minute.
So I got in touch with some of
the people that I interviewed for the book and with many of the parents,
and we organized a kick-off on November 15, 2008 for the organization.
It’s like Make-A-Wish for parents—we take the kids to do something fun
while the parents get to spend a day of respite getting pampered or
doing something they’ve always wanted to do.
The Julian School: An Innovative New Program
For Preschool-Age Children With Special Needs
Parents in search of an
enrichment program catered specifically to children with special needs
can now turn to Gymtime Rhythm & Glues. The popular
children’s activity and enrichment center has added a new program called
The Julian School, designed to address the unique needs of preschoolage
children with learning disabilities. Founders Bonni and Michael
Branciforte started the program last year. Classes are for children ages
3-5 who struggle in a typical classroom setting, and the program helps
prepare them to transition into a mainstream school environment, says
Jennifer Farber, the teacher at The Julian School. By keeping the
student-teacher ratio low (one instructor and two assistants serve a
class of no more than 12 children), teachers and assistants are able to
give each child the attention he or she needs in order to succeed in a
classroom setting. Structured circle time activities facilitate
concept-building as well as socialization. “The goal for the children is
an academic, fun school day that puts their therapy into play,” Farber
says. The Julian School staff customizes the curriculum for the
students, who meet three days a week to take part in activities ranging
from gym time to music to cooking. With an emphasis on teaching in a
functional and “real life” setting, Farber says, The Julian School
provides a safe environment for children to flourish both academically
and socially. —Amanda
Sakuma
For more info: 212-861-7732 or gymtime.net.
