First books for your journey into “syndrome” or “alphabet disorders”

[ 0 ] March 20, 2011 |

Guest Blogger: Deborah Gutman

Does your child seem to be struggling more than you would expect? Are you getting an increasing number of phone calls from the teacher at school?  Are you starting to feel like something is “just different” about your child when you see him/her in a peer group setting? Has your child already been referred for “testing” to evaluate behavioral or learning issues?  If so, you may be at the beginning of a journey that may include many labels, specialists and lots of confusion. You are far from alone. One in every 5-6 children struggles with a psychological disorder or learning difference. You may ask yourself do we have to label every trait as a disorder? My personal perspective as a parent and medical professional is that if their struggles are affecting their daily functioning then a correct label helps obtain the necessary services and accommodations that will help your child reach their fullest potential with the least amount of struggle.

The following 3 books are a good place to start to get an overview of this whole new world as you embark on this journey.  There are hundreds of books specific to certain disorders that are certainly more in depth, however, early on it is often difficult to identify the specific issue or diagnosis and it is helpful to have a vocabulary and knowledge base covering the full spectrum of childhood learning and psychological disorders. This additional knowledge helps bring to light issues, accommodations or resources that may apply to your child even if they do not neatly fit a single diagnosis.

Kids in the syndrome mix of ADHD, LD, Asperger’, Tourette’s, Bipolar and More!: The One Stop Guide for Parents, Teachers and Other Professionals by Martin L. Kutscher

Dr. Martin Kutscher is a pediatric neurologist who specializes in the treatment of ADHD and related learning disorders.  This book is a great starting place because it is an all in one resource. I am 8 years into the journey of helping my child navigate through school and I find there are certain books I can return to over and over again and get a new perspective or kernel of gold each time I read it.  This is one of those books.  Dr. Kutscher addresses diagnoses in the “syndrome mix” including ADHD, Learning disabilities, Austism, Asperger’s, Anxiety disorders, obsessive compulsive disorder, sensory integration dysfunction, tics and tourette’s, depression, bipolar depression, oppositional defiant disorder, and central auditory processing disorders.   Each disorder has it’s own chapter that covers the description of the disorder in very easy to understand terms and scenarios and provides coping strategies and suggestions for both teachers and caregivers.  Dr. Kutscher also has a very useful website with simulations of what it feels like or sounds like to have some of these “syndrome” disorders.  There is a separate chapter on medications providing a cursory overview of a very large and sensitive topic of medicating your child. The book was written in 2005 so this chapter is not completely up to date and probably should not be the primary reference if thinking about medications for your child but is a good starting place.  Check out Dr. Kutscher’s website for simulations and more information: www.pediatricneurology.com

Alphabet Kids: From ADD to Zellwegger Syndrome:  A guide to developmental, neurobiological, and psychological disorders for parents and professionals by Robbie Wolliver.

This book is slightly more current and comprehensive in terms of the number of disorders/syndromes covered, however, the information covered is more superficial than Dr. Kutscher’s book.  It literally goes in alphabetical order through a fairly comprehensive list of clinical and psychological syndromes and disorders.  Chapters consist mostly of a description, diagnosis and prognosis of disorders and additional resources.

The elephant in the playroom: Ordinary parents write intimately and honestly about extraordinary highs and heartbreaking lows of raising kids with special needs by Denise Brodey.

If you need a sense of community or are an avid blog reader this is the book for you.  Denise Brodey is a parent of a child with depression and sensory integration dysfunction who collected essays from parents of children with a wide array of disabilities.  The first time I read this book I spent much of the time having “aha” moments — a mixture of joy and sadness, but mostly a feeling of finally not being alone. Many of these syndromes/disorders are still highly stigmatized and it is sometimes hard to find a real live community to share your struggles with.  This book was just the group of parents I wanted to hang out with – just make sure you have a box of tissues.

Deborah Gutman, is an emergency physician and the mother of a spirited, active, funny, and persuasive superhero who continues to need guidance in using his powers for good.  She blogs on navigating the journey raising a child with ADHD, anxiety and sensory integration disorder on her new blog www.getsuperpowers.blogspot.com. Also follow her on Facebook by “liking” her Superpowers fan page.

Category: books / stories, child development, special needs


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