Book Review From an OTR: Easy For You To Say Q and A’s for Teens Living with Chronic Illness or Disability

If you are a teen with JRA, Ehlers-Danlos syndrome, MD, paraplegia, or any of the many conditions that create daily challenges in your life, you need to read this book.

If you are the parent of a teen or tween with these medical conditions, you REALLY need to read this book.

Dr. Miriam Kaufman wrote the first edition of this book 25 years ago.  It has been updated and improved, IMHO.  It is honest and direct about issues that matter to teens.  She is specific about drug use, sex, intimate and social relationships, and the challenges of having these problems when you are still learning who you are and what you want in life.  Young adults would probably get a lot out of this book as well.  Sometimes illness and disability make launching yourself as an adult a slow and disconnected process.

What is inside?

Chapters 1 and 2 focus on family life and managing medicine and medical doctors.  Teens are trying to separate but still need and (sometimes) want family involvement as much as they want to grow into the amazing adults they are meant to be.

Chapters 3 and 4 talk about friends, dating, school, and work.  

Chapter 5 addresses alcohol, drugs, and medications.  She isn’t judge-y, and she knows that experimentation is likely with or without information.  She just wants teens to think things through so that they make choices based on more than rumor or whispered stories.

Chapter 6 discusses sexuality.  The teen I have treated care more about this topic than they care about almost any other, except dating and friendships.  Dr. Kaufman is honest, explicit without being insensitive, and hopeful.  No teen wants to hear that a satisfying sex life isn’t possible.  

Chapter 7 addresses recreation, and Chapter 8 discussed transitions into adulthood, including taking responsibility for your own healthcare.

Wait.  There is more.  Much more.

Pages 299-315 are appendices that offer you charts so that you can understand which drugs are known to cause acne, hairiness, decreased sexual desire, erectile problems, gynecomastia, affect birth control pills, and then there are pages and pages of explanations of how street drugs interact with therapeutic drugs.  

If you are a teen male and want to know why you have boobs now, or acne, or why sex is no longer the focus of every other thought…it is in here.  If you want to know how to talk to your parents or your doctor about your unwanted facial hair, or the hair “down there”…it is in here.

If you are a parent, and have no idea what yo say about drug use except “don’t”…this book has your back.

Is this book perfect?  No.  Dr. Kaufman doesn’t know some of the strategies and equipment that rehab therapists can suggest to make the physical aspects of sex easier or more pleasurable, or how to deal with getting around the halls and sitting/walking at school, a job, or in your own bathroom, and the chapter on school and work isn’t detailed enough for me as an OTR.  But she has provided a book that is more helpful than others I have seen, with more details than I knew about drug interactions (both legal and illegal usage) and how some drugs affect the effectiveness of birth control pills.  For her extensive appendices alone, this is a book to read and own.

By Cathy Collyer

I am a licensed occupational therapist, licensed massage therapist, and certified CBT-i sleep coach in private practice in the NYC area. I have over 25 years of professional experience in adult and pediatric treatment. It has been a joy to help people of all ages improve their ability to grow and thrive! Occupational therapists are focused on enhancing a client's functioning in everyday life. We are practical healthcare providers, interested in teaching, adapting actions and environments, and building a client's useful skills for living their best life, regardless of their challenges. I am the author of five books, including "Staying In The Room: Managing Medical And Dental Care When You Have DID" and "The Practical Guide To Toilet Training the Autistic Child". I lecture on many subjects, including sleep, trauma, and development. Contact me to learn more about how I can help you achieve YOUR goals!

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