The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

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My first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, was a wonderful experience to write and share.  The number of daily hits on one of my most popular blog posts  Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children helped me figure out what my next e-book topic should be.

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?

  1. Parents of hypermobile children ages 0-6, or children functioning in this developmental range.
  2. Therapists looking for new ideas for treatment or home programs.
  3. New therapists, or therapists who are entering pediatrics from another area of practice.
  4. 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 on Amazon.com

And now a click-through and printable download is available on Your Therapy Source!  

For the week of 10/26/19, it is on sale, and when bought as a bundle with The Practical Guide to Toilet Training Your Child With Low Muscle Tone, it is a great deal and a complete resource for the early years!

Already bought the book?  Please share your comments and suggestions for the next two books!  Volume Two will address the challenges of raising the school-aged child, and Volume Three focuses on the tween, teen, and young adult with hypermobility!

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Why Injuries to Hypermobile Joints Hurt Twice

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My new e-book, The JointSmart Child: Living and Thriving With Hypermobility, Volume I, is just about ready to launch.  One of the book’s major themes is that safety awareness is something that parents need to actively teach hypermobile young children.  Of course, physical and occupational therapists need to educate their parents first.  And they shouldn’t wait until things go off the rails to do so.

Hypermobile kids end up falling, tripping, and dropping things so often that most therapists have the “safety talk” with their parents on a regular basis.  What they don’t speak about as often are the long-term physical, emotional and social impacts of those injuries.

Yes, injuries have more than immediate physical effects on hypermobile kids.  Here is how this plays out:

  • The loss of mobility or function after an injury creates more dependency in a little person who is either striving for freedom or unsure that they want to be independent.  Needing to be carried, dressed or assisted with toileting when they were previously independent can alter a child’s motivation to the point where they may lose their enthusiasm for autonomy.  A child can decide that they would rather use the stroller than walk around the zoo or the mall.  They may avoid activities where they were injured, or fear going to therapy sessions.
  • A parent’s fear of a repeated injury can be perceived by a child as a message that the world is not a safe place, or that they aren’t capable in the world.  Instilling anxiety in a young child accidentally is all too easy.  A fearful look or a gasp may be all it takes.  Children look to adults to tell them about the world, and they don’t always parse our responses.  There is a name for fear of movement, whether it is fear of falling, pain or injury: kineseophobia.  This is rarely discussed, but the real-life impact can be significant.
  • Repeated injuries produce cumulative damage.  Even without a genetic connective tissue disorder such as Ehlers-Danlos syndrome, the ligaments, tendons, skin and joint capsules of hypermobile children don’t bounce back perfectly from repeated damage.  In fact, a cascade of problems can result.  Greaster instability in one area can create spasm and more force on another region.  Increased use of one limb can produce an overuse injury in the originally non-injured limb.  The choice to move less or restrict a child’s activity level can produce unwanted sedentary behavior such as a demand for more screen time or overeating.
  • Being seen as “clumsy” or “careless” rather than hypermobile can affect a child’s self-image long after childhood is over.  Hypermobile kids grow up, but they don’t easily forget the names they were called or how they were described by others.  With or without a diagnosis, children are aware of how other people view them.  The exasperated look on a parent’s face when a child lands on the pavement isn’t ignored even if nothing is said.

In my new book, I provide parents with a roadmap for daily life that supports healthy movement and ADL independence while weaving in safety awareness.  Hypermobility has wide-reaching affects on young children, but it doesn’t have to be one major problem after another.  Practical strategies, combined with more understanding of the condition, regardless of the diagnosis, can make life joyful and full for every child!

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Can The Parents of Pediatric Clients Have PTSD?

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I wrote a post about the common complications seen with long-term neonatal medical issues The Subtle Ways Chronic Medical Care Affects Infant and Toddler Development, but the rest of the family isn’t immune to trauma reactions.  A difficult pregnancy or delivery, the shock of a unexpected genetic disorder diagnosis, or the crises that arise in the NICU all weigh heavily on parents too.

Most pediatric therapists aren’t seeing children in the NICU or the hospital.  We are in the home, the clinic or the school.  Acute medical issues are few and far between in these settings.  But the effects of trauma can continue to color treatment long after a child is medically stable.  What looks like a personality problem or a poor fit between therapist and a family can really be PTSD that hasn’t been acknowledged and treated.  Many parents are so focused on therapy for their child that they won’t even consider that they need to help themselves as well.  This should change.

I recently read a research study comparing the PTSD symptoms of parents with rare disorders like Ehlers-Danlos, Prader-Willi, and autism.  The parents whose children were aggressive or injured themselves, or had serious accidental injuries scored strongly on a standard PTSD scale.  If you have ever spent time with a child with these behaviors and wondered how their family handled it, well, it leaves emotional as well as physical scars.

The following are only a few of the common scenarios that can be the result of untreated parental PTSD:

  1. Parents who ask for a therapist’s guidance and then question the recommendations repeatedly.  When the medical picture changes rapidly in a crisis, and multiple doctors give conflicting recommendations or predictions, parents become gun-shy about anything any professional tells them later on.  Even though their experience with therapists may have been positive, the stain spreads around.
  2.  Families that withhold information from therapists, and may even resist open communication between team members.  See #1.  “Splitting” is a common response from people who are convinced that controlling other people protects them in some way.  It also sustains drama and focuses attention away from issues that are painful, such as the lack of a child’s progress or the final diagnosis.
  3. Signs of common illnesses create high levels of anxiety and agitation.  Parents that have witnessed resuscitation and emergency surgeries can become absolutely distraught over a URI.  The memory of a child gasping for breath or being unresponsive is so painful that a common cold brings it all back.
  4. Parents who are developing addictions or whose addictions are increasing in severity.  A mother who is anorexic, a father who is using prescription drugs or alcohol more frequently, or a parent who is spending more time online than is healthy may be responding to their pain in ways that are dangerous for them and their family.  If a parent is a trauma survivor, there are things that can help them handle their reactions to their child’s treatments: Are You a Trauma Survivor AND the Parent of a Special Needs Child?.

Parents are essential allies in therapy, and it is important to support them as well as our pediatric patients.  Some kind and compassionate words can go a long way, and even sharing this post with a parent may help them think about finding support to address the pain that they are holding onto, long after they have left the hospital.

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Targeted Toilet Training Strategies to Help The Child With A Receptive Language Delay

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After writing my first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived! ,I continue to think of additional issues that can complicate (but not derail)  training.  One of these issues is a receptive language delay.  This is when a child’s ability to comprehend language is not age appropriate.  It may be accompanied by a delay in expressive language as well.  I don’t think it is a hard stop to training, but there are some strategies that improve the experience.  Not all of them are obvious.

When a child is unable to easily and quickly understand what you are saying during toilet training, you will need to do a few things differently:

  1. Expect to need established routines to support your verbal instruction.  This can include very regular trips to the potty rather than happening randomly.  Routines are essential for all children, but these kids really need them to shore up the language you are using.  Think about buying something in another language.  The routine or presenting the item, finding out the fee, offering payment and leaving with your item helps you get over the fact that you have forgotten most of your high school level French.  When they always sit on the potty right before a specific show, they know why and what you are saying more easily because they know the context.
  2. Use clear and consistent gestures and facial expressions as additional messaging while teaching and encouraging performance.  Gestures and facial expressions clarify your words and help kids respond quickly.  If they have too many accidents because they were confused, they could decide to stop cooperating.
  3. Monitor your language complexity, and consider simplifying it for ease of comprehension under stress.  As in the Fast Food Rule’s use of Toddler-ese, shorten phrases and emphasize important words.  This is not the time to lengthen your statements.  Repeat if necessary, but don’t elaborate.  Read Taming Toddler Tantrums Using Sympathetic Reframing for more details on TFFR.
  4. Assume that you will need to be more enthusiastic, more positive, and spend more time on training in general.  Your child is probably already someone with a short fuse.  Struggling to understand what people are saying makes that easy.  Now you are trying to teach a new skill, possibly one that they aren’t 100% excited to learn.  That doesn’t mean never teach it.  It means have a good plan, with lots of optimism and patience on your part.

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Pillowfort at Target: Should You Ask Your OT Before You Click Buy?

 

There are so many families out there that need great equipment for their sensory kids.  Pillowfort materials are on sale at Target, one of my favorite big box stores.  The items are affordable and stylish.  But are they what you really need?  In order to get the products that serve your child’s needs, you may want to think beyond color and style.  The key to good equipment is having a big picture plan.  The wrong item for the wrong kid is worse than not hitting “send”.

Some good examples are their crash pad and their chair.  If you have a sensory-seeking kid, you know what abuse your couch and bed can take.  Kids tend to dive bomb them and little by little, destroy them.  Pillowfort will sell you a nice crash pad, and they use a smiling child lying prone on one of their pads in their display on Target.com.

You might want to look at the dimensions.  In my professional experience, most of my clients are looking for way more square footage to crash into.  And when they are dysregulated, which is often, they aren’t going to be able to land squarely on such a small pad.  Therapists use pad the size of a thick full mattress for a reason.  We are all safety, all the time.  And we know what works.

The rocking desk chair is another nice chair that will serve a small number of kids.  It looks pretty sturdy, but the big sensory seekers can wear out hinges really easily.  A chair that rocks is a chair that can become tippy with the right (or wrong) user.  Choose this chair only if you have a child that isn’t one of THOSE kids.

There are other choices for kids that seek movement, and they aren’t chairs.  They are sensory diets, created by therapists with years of experience in evaluating and treating your child.  Read Sensory Stimulation is not Sensory Treatment and Halloween With Sensory Sensitive Kids: The (Sensory) Tricks of the Holiday for more information on how Good OT treatment can help your child.

Looking for information to help your hypermobile child with Down syndrome, Prader-Willi syndrome, or Ehlers-Danlos syndrome?

I wrote an e-book for you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is now available on Amazon as a read-only download and at Your Therapy Source as a printable and click-able download!

This book answers all the questions you want to ask about finding the right high chairs, clothes, toilet seat, and even which crayons help your young hypermobile child make faster progress.  It has checklists and forms to help you communicate with your babysitters, your child’s teachers, even forms to improve your appointments with doctors.  Chapters on communication give you practical ideas to improve your family’s understanding of hypermobility and guide you to clarify what they can do to provide you with real support, not pity or denial.  Get it today, and start feeling more confident and empowered as a parent!

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Is Benign Joint Hypermobility Syndrome (BJHS) All That Benign?

 

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Throwing the bathwater out and keeping the baby

Many of the children I treat every year have some degree of hypermobility.  Some of them arrive on my caseload with diagnoses such as Prader-Willi syndrome or Down syndrome.  Their low muscle tone is understandable, and their hypermobility has been easily observable since birth.  Some of them are almost certainly going to be diagnosed in the future with hypermobile Ehlers-Danlos syndrome (hEDS).

There are always a few children that have been given the BJHS diagnosis without any identified genetic disorder.  Most of them have issues with delayed gross and fine motor development.  Many of them are already wearing orthotics.  Many of them struggle to communicate, demonstrating a level of instability and difficulty controlling their trunk, neck and mouth.  Few of them are complaining of pain, but most have low endurance, poor stability in dynamic positions, and use compensatory patterns to move.

So is this all that benign?  I don’t think so.

 These kids are at huge risk for cumulative and progressive joint, ligament, and muscle issues.  They are also at risk for social and emotional issues that arise from their inability to keep up with their peers and the difficulty of fulfilling the expectations of school, friends and family, as well as struggling to handle their own desire to move and grow while fighting hypermobility.  Almost all of the children I have treated with BJHS have average to above average intelligence and display sensory-based issues; sensory seeking, sensory aversion or sensory modulation.

Since therapists don’t provide a diagnosis, and doctors don’t provide most of the treatment these kids need, it appears to me that the only reason a doctor would use the word “benign” is that there is no disease process and there isn’t anything much that the standard ammunition doctors use (surgery and medication) can do for these kids.  It is easier than saying “I don’t have anything to offer your child except to refer to therapists and monitor until a problem that I CAN treat comes up”.

If your child has been given the diagnosis of BHJS, read more on this site about the effects of hypermobility, such as How To Correctly Reposition Your Child’s Legs When They “W-Sit” and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.  There are a number of additional or alternative diagnoses that these kids eventually receive, including EDS.  If you are a parent, learn as much as you can about related diagnoses and discuss these with your therapists and doctors.  But don’t assume that what your child is experiencing is benign.

Looking for more information on raising a hypermobile child?

I wrote an e-book for you!  The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is my newest book.  It explains how to navigate all the self-care challenges such as selecting high chairs, booster seats, clothes and even how to make your home safer while allowing your child more independence.  It builds your ability to communicate with teachers, therapists, your family, and even doctors!  Read more about it here: The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

This unique book is available as a read-only download on Amazon or as a click-through and printable download at Your Therapy Source.  YTS is also bundling both e-books together for a great deal!

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How To Get Your Kid To Share (Hint: The Fast Food Rule Will Be Used)

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Not a week goes by that a parent or nanny asks me how to get a young child, usually under 3, to share.  I get it; it is embarrassing when a toddler rips a toy away from another child, or has a death grip on a toy car while growling at their playdate friend.

Sharing isn’t something that comes naturally to most kids.  The rare child that hands over a toy when asked isn’t the average child.  You have to teach this behavior, and you have a couple of choices.  Only one is going to give you any peace:

  1. Threats:  Telling your child that if he doesn’t share that he will lose his valued toy.  This may work in the short run, but like spanking, you teach a child that violence or the threat of violence is the way to power.  We have too much of that already.
  2. Shame:  Telling a child that they are not nice people because they don’t want to share isn’t any better.  It doesn’t make it much kinder to say “You aren’t being nice right now”  because you still haven’t acknowledged the child’s feelings. Don’t we all carry around more shame than we can handle?  I know no one thinks they are shaming their child by saying this.  Stop now.  Make a better choice.
  3. Empathy followed by reality:  Using the Fast Food Rule, you tell the child what you think they are thinking “You don’t want to share; you want that car only for you” or an even simpler version “You say NO SHARE”.  When the child nods or in some physical or verbal way indicates that they understand you and agree that this is their opinion, you add sympathy to your voice and say something like “I am SO sorry, but it is XXX’s turn now.  You will get another turn later”.  Many times the child will hand over the car.  Sometimes you will have to take it, but they might not flip out.  Your empathy and their intelligence (if they are over 18 months old, they have had experience with sharing) will help them accept the reality.  Read Stop The Whining With The Fast Food Rule for more details on Dr. Harvey Karp’s excellent strategy.

Of course, if your child is exhausted, hungry, ill, or going through a change in routine, home, caregivers, new sibling, etc. all bets are off.  They are living on the edge, and thing could fall apart.  What do you do then?  You feed, give a nap, a hug, and remember that asking a stressed child to share isn’t going to go very well.  But you also use all Dr. Karp’s positive strategies, the ones he calls Time-Ins.  Things like Patience Stretching Stretch Your Toddler’s Patience, Starting Today! and Gossiping Let Your Toddler Hear You Gossiping (About Him!).

The altruism that gives birth to sharing should not be expected in children under 2.  We ask them to follow our sharing rules, and have to help them grow to an age and a place in which they can comprehend what sharing is really about.  You may have to wait until 4 or 5 to see your child really understand how the other child is feeling and why sharing with them works better than being selfish.  At a very young age, it is enough that they know we understand where they are coming from and we will help them follow this important social rule.

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