Tag Archives: Laurie Edwards

Teens With Chronic Illness Or Disability Need A Good Guide: Read “Easy For You To Say”

bagas-vg-426755Being 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.

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Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues

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It is graduation time here in the U.S.  Kids (and parents) are thinking about the future.  But when your teen has chronic health conditions, the future can be uncertain and the decisions more complicated.  I know that the saying “Do what you love and you won’t have to work another day of your life” is very popular, but the truth is that career planning is much more than finding your passions.

Here are a few things to think about:

  1. Every teen needs to learn about their interests and their skills.  Regardless of medical concerns or limitations, picking a career path that doesn’t match any strong interests is a plan almost certain to fail.  It’s not just that doing what you are drawn to feels good.  There is a medical reason to pick a career that they don’t hate;  if the greatest part of the day or week will require them to do tasks they dislike or find boring, they are at risk for stress-related flares in their condition. Similar concerns exist when a career choice doesn’t match their skills.  Loving what you do but not having the right skills or talents is very frustrating.  It could be harder to get and keep a job without good skills.  Help your teen identify what interests them about life and school, and where they truly shine.  If your teen hasn’t had a chance to observe people working in the profession(s) they find interesting, make sure that they do so before they invest time and money in training.
  2. Look at potential careers with an eye to benefits, job demands and scheduling flexibility.  Most adults with chronic health conditions want to be employed, and every one of them will need health insurance.  In the U.S., that means finding a job that provides insurance or purchasing individual coverage after aging out of family policy coverage options at age 26.  Generous sick days and personal days are perks every employee desires, but for people with a chronic illness, those benefits allow for medical treatments and rest during periods of symptom flares.  The NYT has written about the fact that insurance isn’t total assurance that chronic illness won’t create major stress ,but insurance is essential.  Think carefully about the working environments common to a particular career path.  Some careers will have a high-stress pathway (i.e. trial attorney) but also less demanding types of work within the profession.  Other careers require a high degree of physical stamina and skill.  These may not be the jobs you would think of right away as physically demanding.  For example, preschool teachers and hairdressers are on their feet most of the day, every day!
  3. Career planning and completing required training while living with a chronic and possibly progressive condition may require outside support.  Teens that have been able to perform in high school without any compensations such as 504 plans may need more help in college.  Higher education often expects more independence and more mobility (think large campuses and internships) from students.  Most universities have an office for disabled students. Their staff will work with students with disabilities to create a plan, but it is the student’s responsibility to inform the office of specific needs and to develop strategies with the staff and faculty.  If your teen doesn’t want to be “identified” as disabled, this is the time to talk about being proactive and positive.  Finding assistance and receiving effective support could make all the difference.
  4. Explore local and online support groups.   Adults with your teen’s medical issues may have useful strategies or tales of caution that will help you develop a plan or expose problems that you haven’t anticipated.  Remember that personal stories are just that: personal.  Experiences are quite variable and it is difficult or impossible to  predict another person’s path.

For a book that can help teens with the big transitions and the small challenges, check out Teens With Chronic Illness Or Disability Need A Good Guide: Easy For You To Say.  This book will be a great resource for life issues big and small.  If you or your child isn’t a teen any longer, read “Life, Interrupted” by Laurie Edwards.  She speaks about her challenges with a serious respiratory illness, but the issues regarding school, work, relationships and acceptance are all relevant.

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