Being a tween or teen isn’t easy, but having a chronic physical illness or disability (not interchangeable) can make it extremely difficult. Kids aren’t always great at asking for help or even answering questions, so this wonderfully useful book has done the groundwork for you.
Dr. Miriam Kaufman’s book Easy For You To Say is an easy-to read format of questions and answers that is accessible for teens to read and parents of teens will learn a tremendous amount as well. She has a significant amount of experience with this subject, and has plenty of solid medical knowledge to back up her information.
As a physician, you will find that she includes a great deal of medical information, including medication lists related to teen concerns such as acne and sexual response and functioning. These lists, of course, are dated the minute the book is published, but the general categories of drugs that have effects that concern teens is helpful as a starting point for discussions with a pediatrician or specialist.
This book isn’t just about the medical concerns that occur with physical illness and disability. Dr. Kaufman covers the challenges of relationships of all kinds, and practical issues with school, work, and having fun as a teenager while dealing with significant issues. This book doesn’t mince words but is unfailingly positive. Kids (and parents of teens) really need that positivity while trying to launch into a life of more independence. She is a strong proponent of self-advocacy that doesn’t become militant but is always life-affirming. There is some discussion of higher education and career planning, which is so essential Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues.
This book has it’s limitations. It doesn’t address cognitive disabilities or psychiatric disabilities like living with bipolar illnesses, nor does it speak about ASD or SPD. These issues can co-occur in the same teen, and it is then that you might want to think about what an OT has to offer. This author doesn’t even mention us as helpful professionals that do more than, if you can believe it, help kids look at career options. Perhaps she missed the class on what “occupation” really references. Oh well.
As an occupational therapist, I wish my profession had been mentioned as a greater resource for disabled teens, but perhaps I should not be that surprised that it is left out. Most physicians aren’t aware of how OTs can meaningfully assist kids past the Early Intervention years to enhance their functioning and learn both better skills and work-arounds to accomplish what they would like to do in life. For example, her book speaks in great detail about the complications of mobility and coordination limitations during sexual activity. Since just about every teen is curious about this subject, an occupational therapist could help them adapt their environment, equipment and movements to make this part of ADLs a success on many fronts. Dr. Kaufman has a lot of ideas, but the specifics for each teen are going to be different, and that is where OTs shine.
This book should be on the shelf of most pediatric physiatrists, and most OTs. It is now on mine! If your child is no longer a child, I recommend “Life Disrupted” by Laurie Edwards. This book covers the situations that young adults in their 20’s really need to figure out. Specifically, learning how to craft a career, develop relationships and become independent when you are dealing with a chronic illness. None of it is easy, but the author is both supportive and realistic. I think that helps more than platitudes and positivity without, as Dr. Phil might say, putting verbs in the sentences.