Category Archives: teens and tweens

Why Using a Chair Correctly is SO Difficult for Hypermobile Kids and Adults

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I spend a fair amount of time teaching hypermobile people of all ages how their sitting position affects their ability to write, keyboard, or do just about anything.  And of course, we want hypermobile people to have a stronger core while sitting.  But their chair can help them.  It is not a crutch.

Yup.  Use the chair.  Correctly.

Understanding how to use the back support of the chair correctly is fairly simple, but really hard for hypermobile people to do.  The reason it is so challenging has very little to do with being obstinate, forgetful, or in denial.

It has a lot to do with sensory processing and old habits (even for kids).

  • Hypermobility reduces sensory feedback from joints and muscles.  This makes it harder to pay attention to posture while sitting.  It is the equivalent of writing while wearing mittens.
  • Less sensory feedback frequently results in unconscious strategies to boost feedback.  Wrapping legs around the chair’s legs.  Leaning forward and resting the head on the palms.  Folding one leg under the body while sitting.  They do increase proprioception.  They also put the spine out of alignment and reduce the use of core stabilizers.
  • From the moment a hypermobile person is born, they come up with compensatory strategies.  Leaning.  Twisting.  Slumping.  Getting up for no good reason, over and over.  This means habits are formed before they know how to walk.  By the time they get to school, they are simply “The way I am”.  And hard to break.

If you or your child are hypermobile, there are a few hacks that work:

  1. Practice.  Even for a few minutes.
  2. Write a note on the table or screen in front of you.
  3. Make sure the chair is a good one.
  4. Accept that fatigue destroys the best intentions.  Allow movement breaks.
  5. Get rid of the old idea that depending on the chair indicates poor postural control.  Use the chair to perform the task.  You can exercise later.  This is not the time to exercise.

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Book Review By An OTR: Life, Disrupted; Getting Real About Chronic Illness in Your Twenties and Thirties

Although I work in pediatrics now, I spent the first 10 years of my career in adult ortho-neuro rehab. This means that I worked with many young adults facing issues from RA, MS, Lupus, spinal cord injuries, and more. They were just getting started with jobs, raising children, and making an adult life, but they had to deal with chronic disorders that impacted every part of daily living. And their needs were different in some ways from the older patients, who developed issues in their 60’s and 70’s or beyond. THEIR children were grown, their careers were often over, they had saved for retirement, etc.

Why am I writing a review on a book about ADULTS? First, many of the kids I treat will grow up to be adults with chronic issues. Their parents may or may not acknowledge this at 3 a.m., when they think about their child’s future with some fear in their hearts. Second, the PARENTS of some of my clients have their own issues. Sometimes the same ones, but sometimes lightning does strike twice, and the child has a different issue or issues from the parent’s own concerns. Either way, people want ideas and the feeling that they aren’t the only ones dealing with these issues.

This book is written by Laurie Edwards, who faces a chronic respiratory illness with a combination of determination and honesty that other adults with chronic illness will find refreshing. She isn’t shy about describing how it has affected her relationships or her ability to look at her future. But the book includes many other stories. Within the book you will meet a college student with Ehlers-Danlos syndrome, a young mother with another respiratory illness, and others with common and uncommon diagnoses.

Chronic disorders or illnesses can make immediate decisions harder, but they make plans for the future harder as well. I have felt strongly that teens with chronic illnesses need to plan their careers based on more than their talents. The realities of living in the US mean that having health insurance isn’t a given. Having the ability to take paid leave isn’t either. The “gig economy” isn’t kind to people with chronic disorders, and until our country decides to change this, it is important to choose education and training that will allow a person with a chronic illness to obtain good care. It really can be a “life or death” decision.

Ms. Edwards also takes on the decision to bear and/or raise children. Although there aren’t any specific strategies offered, she walks the reader through her process, and the decision-making of other people with chronic illnesses and conditions. One of the great gaps in care, IMHO, is care for mothers with chronic disorders. Raising children is hard work. Hard physical work, hard mental work, hard emotional work. Lots of joy, but lots, and lots, of work. Protecting their health when faced with their child’s needs often means that women sacrifice themselves and do not realize that there are options that reduce risk while being the great moms they want to be.

The lack of useful information from the therapy community is just astounding. We know a great deal that could make life easier, but there isn’t anything available to parents unless they are lucky enough to have generous health care coverage that provides them with therapy sessions. I have found YouTube videos on lifting and carrying kids when you have physical disabilities…none by therapists. We know so much about this topic, but parents seem to have to figure even this simple thing out for themselves. When understanding the principles and their own abilities could make them empowered to plan for each situation as it comes along.

For more information, read Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues and Parents With Disabilities Need The Happiest Toddler on the Block Techniques . To read posts about children that have relevance for adults as well, read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies and When Writing Hurts: The Hypermobile Hand .

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

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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.