Parents of hypermobile kids are taught early on not to pull on limbs while dressing them or picking them up. It is less common to teach children how to protect their own joints.
In fact, parents may be encouraged by their child’s doctors to let them be “as active as they want to be, in order to build their strength”. Without adding in education about good joint protection, this is not good advice. This post is an attempt to fill in the space between “don’t pull on their limbs” and “get them to be more active”.
Why? Because hypermobile joints are more vulnerable to immediate injury and also to progressive damage over time. Once joint surfaces are damaged, and tendons and ligaments are overstretched, there are very few treatments that can repair those situations. Since children often do not experience pain with poor joint stability, teaching good habits early is essential. It is always preferable to prevent damage and injuries rather than have to repair damage. Always. And it is not as complicated as it sounds.
The basic principles of joint protection are simple. It is the application that can become complex. The more joints involved in a movement or that have pre-existing pain or damage, the more complex the solution. That is why some children need to be seen by an occupational or physical therapist for guidance. We are trained in the assessment and prescription of strategies based on clinical information, not after taking a weekend course or after reading a book. I am thinking of writing an e-book on this subject, since there really is nothing much out there for hypermobile people at any age….
Some of the basics of joint protection are:
Joints should be positioned in anatomical alignment while at rest and as much as possible, while in use. Knowing the correct alignment doesn’t always require a therapist. Bending a foot on it’s side isn’t correct alignment. Placing a wrist in a straight versus an angled position is.
Larger joints should execute forceful movements whenever possible. That means that pushing a heavy door open with an arm or the side of your body is better joint protection than flattening your hand on it. The exception is if there is damage to those larger structures. See below.
Placing a joint in mid-range while moving protects joint structures. As an example, therapists often pad and thicken handles to place finger joints in a less clenched position and allow force to dissipate through the padding. We discourage carrying heavy loads with arms held straight down or with one arm/hand.
Remember: once joints are damaged, if joints are painful, or the muscles are too weak to execute a movement, activity adaptations have to be considered. There is no benefit to straining a weak or damaged joint structure.
Hypermobility is a symptom that affects almost every aspect of a family’s life. Unlike autism or cerebral palsy, online resources for parents are so limited and generic that it was obvious that what was needed was solid practical information using everyday language. Being empowered starts with knowledge and confidence.
The result? My new e-book: The JointSmart Child: Living and Thriving With Hypermobility. Volume One: The Early Years.
What makes this book unique?
This manual explains how and why joint instability creates challenges in the simplest tasks of everyday life.
The sensory and behavioral consequences of hypermobility aren’t ignored; they are fully examined, and strategies to manage them are discussed in detail.
Busy parents can quickly spot the chapter that answers their questions by reading the short summaries at the beginning and end of each chapter.
This book emphasizes practical solutions over theories and medical jargon.
Parents learn how to create greater safety at home and in the community.
The appendices are forms that parents can use to improve communication with babysitters, family, teachers and doctors.
Who should read this book?
Parents of hypermobile children ages 0-6, or children functioning in this developmental range.
Therapists looking for new ideas for treatment or home programs.
New therapists, or therapists who are entering pediatrics from another area of practice.
Special educators, and educators that have hypermobile children mainstreamed into their classroom.
Looking for a preview? Here is a sample from Chapter Three: Positioning and Seating:
Some Basic Principles of Positioning:
Therapists learn the basics of positioning in school, and take advanced certification courses to be able to evaluate and prescribe equipment for their clients. Parents can learn the basics too, and I feel strongly that it is essential to impart at least some of this information to every caregiver I meet. A child’s therapists can help parents learn to use the equipment they have and help them select new equipment for their home. The following principle are the easiest and most important principles of positioning for parents to learn:
The simplest rule I teach is “If it looks bad, it probably IS bad.” Even without knowing the principles of positioning, or knowing what to do to fix things, parents can see that their child looks awkward or unsteady. Once they recognize that their child isn’t in a stable or aligned position, they can try to improve the situation. If they don’t know what to do, they can ask their child’s therapist for their professional advice.
The visual target is to achieve symmetrical alignment: a position in which a straight line is drawn through the center of a child”s face, down thorough the center of their chest and through the center of their pelvis. Another visual target is to see that the natural curves of the spine (based on age) are supported. Children will move out of alignment of course, but they should start form this symmetrical position. Good movements occurs around this centered position.
Good positioning allows a child a balance of support and mobility. Adults need to provide enough support, but also want to allow as much independent movement as possible.
The beginning of positioning is to achieve a stable pelvis. Without a stable pelvis, stability at the feet, shoulders and head will be more difficult to achieve. This can be accomplished by a combination of a waist or seatbelt, a cushion, and placing a child’s feet flat on a stable surface.
Anticipate the effects of activity and fatigue on positioning. A child’s posture will shift as they move around in a chair, and this will make it harder for them to maintain a stable position.
Once a child is positioned as well as possible, monitor and adjust their position as needed. Children aren’t crockpots; it isn’t possible to “set it and forget it.” A child that is leaning too far to the side or too far forward, or whose hips have slid forward toward the front of the seat, isn’t necessarily tired. They may simple need repositioning.
Equipment needs can change over time, even if a child is in a therapeutic seating system. Children row physically and develop new skills that create new positioning needs. If a child is unable to achieve a reasonable level of postural stability, they may need adjustments or new equipment. This isn’t a failure; positioning hypermobile children is a fluid experience.
The JointSmart Child: Living and Thriving With Hypermobility Volume One: The Early Years is now available as a read-only download on Amazon.com
NEW: Your Therapy Source is selling my new book along with The Practical Guide to Toilet Training Your Child With Low Muscle Tone as a bundle, saving you money and giving you a complete resource for the early years!
Already bought the book? Please share your comments and suggestions for the next two books! Volume Two is coming out in spring 2020, and will address the challenges of raising the school-aged child, and Volume Three focuses on the tween, teen, and young adult with hypermobility!
“Raising Your Spirited Child” is not a new book. Some things just have value as time goes on. The subtitle is “A Guide for Parents Whose Child is MORE Intense, Sensitive, Perceptive, Persistent or Energetic”. The author, Mary Sheedy Kurcinka is a teacher and wrote a book that has specific, useful strategies for daily life skills with young children that really work. Her advice is most successful, in my opinion, with children that are cognitively older than 4 years old. That may mean that a younger child with special needs might not able to respond to all of her strategies, but her perspective on temperament and adapting the environment will almost certainly apply. Her ideas definitely get people thinking about what could work for their family.
She gives special chapters to mealtime, bedtime, dressing, socializing and holiday/vacation periods. Issues like autism, developmental delay and sensory processing disorder may require some adaptations. But the author has a positive attitude, a loving approach, and sympathy for both the child and the parent of a spirited child as they navigate daily life.