• Special Needs from A to Z

    Children With Special Needs Often Suffer From More Than One Developmental Disorder. A New Book Offers A Fuller Picture

    By New York Family

    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.

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