Category Archives: child safety

Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies

I spent almost 10 years working in adult rehab before I transitioned to pediatrics.  I still teach joint protection, but I teach it differently to kids and their parents.  Kids rarely have JRA or joint damage in general.  What they have in spades are serious degrees of hypermobility.  And the methods to use joint protection strategies so that tissue damage is minimized are different:

Joint protection strategies for hypermobility need to be adapted from those for other disorders, in order to obtain the best results and put clients at low risk of accidental injury.

What’s So Different?

  • Hypermobility can create a different type of joint strain than OA or other joint damage, and different types of soft tissue damage.  Understanding the way placing force on hypermobile joints can damage them is essential to understanding how to guide clients correctly.
  • Excess mobility reduces sensory feedback even when pain isn’t a factor, and can create different types of pain that aren’t as common as in RA, OA, or other joint deformities.  It can also diminish the protective function of pain.  Hypermobile people are often not in enough discomfort when they are overextending their joints.  The next day they find out that they overdid it.  Too late!  This isn’t just about the knees and ankles, guys.  I laugh a little bit , and then groan a lot, when I see articles on proprioceptive loss in hypermobility that focus on only lower extremities.  There are a whole bunch of joints above the waist, guys, and hypermobility affects each and every one of them as well.  Just because you aren’t using them to walk doesn’t mean you don’t need proprioception to use them…..!  I wonder who thinks this is just a lower extremity issue?
  • Hypermobility appears to cause dyspraxia that can “disappear” after a few repetitions, only to reappear after a while or with a new activity.  How can that be?  It can’t.  Praxis doesn’t work like that.  What you are seeing is a lack of sensory feedback that improves with repetition, only to be replaced with a lack of skilled movement from fatigue, or from overuse of force, or pain.  This is really poorly understood by patients, and even by some therapists, but makes perfect sense when fully explored.
  • Hypermobility is seen in a wide range of clients, including younger, more active people who are trying to accomplish skills that are less common in the over-60’s set that we see for OA.  Different goals lead to different needs for joint protection strategies and solutions.
  • Joint damage isn’t evident until long after ligament damage has been done.  People with hypermobility at every age need to protect ligaments, not just joint surfaces.  This isn’t always explained.
  • Their “normal” was never all that normal.  Folks with RA and OA often have years, even decades, of pain-free life to draw on for motor control.  Hypermobility that has been with a person for their entire life deprives them of any memory of what safe, pain-free movement, should feel like.  They are moving “blind” to a degree.  Incorporate this fact into your treatment.
  • So many people are hypermobile in multiple joints that the simple old saws  like “lift with your legs, not your back”  won’t cut it.  Whatever you learned in your CEU course on arthritis won’t be exactly right. Think out of the box.
  • The reasons for hypermobility have to be accounted for.  Genetic disorders like PWS, Down syndrome, and Heritable Disorders of connective Tissue (HDCTs) bring with them other issues like poor skin integrity and autonomic nervous system dysfunction.  Always learn about these before you provide guidance, or you risk harm.  We therapists are in the “do no harm” business, remember?

This fall I may start writing a workbook on addressing the use of joint protection, energy conservation, pacing and task adaptation for hypermobility.  There is certainly nothing out there currently that is useful for either therapists or patients.  If you want or need this book, send me a comment and let me know!!

in the meantime, please read Need a Desk Chair for Your Hypermobile School-Age Child? Check out the Giantex Chair , Hypermobility and Music Lessons: How to Reduce the Pain of Playing and Why Injuries to Hypermobile Joints Hurt Twice

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Better…unless that shoulder and elbow are as hypermobile as that wrist and those MCPs!

Joint Protection And Hypermobility: Investing in Your Child’s Future

 

allen-taylor-dAMvcGb8Vog-unsplash.jpgParents 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 young 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.  Because hypermobile joint issues can be different from arthritic joints, read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies  and understand the principles below that apply to almost everyone:

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.

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How to Get Children to Wash Their Hands

 

phil-goodwin-TxP44VIqlA8-unsplashThis season’s flu and viruses have parents and teachers wondering how to raise their game regarding infection control.  Washing your hands is one of the most important things anyone at any age can do to protect their health.  But small children aren’t always cooperative.  Getting them to wash their hands can be tough.

The families I work with know that I will not begin a session in their home, and especially that I won’t touch their child, without washing my hands first.  Not only is this to protect them, it is to model good practice for the kids.  Some children will ask me why I am washing my hands.  I always answer them by naming two things familiar to them.   I tell them that when I touch the outside of my car, my hands get dirty, and I don’t want to put dirt on our toys.

Cars and toys.  Most kids over 2 know what those two things are, and they know that one is not so clean, and the other one shouldn’t have dirt on it.  They get it.

But only a few parents insist that their child wash their hands before they begin working with me.  Some children want to share my sanitizer spray, and if a parent agrees, I will show them how to use it.

Now that we are facing both a serious flu season and a new virus, it seems like a good idea to provide suggestions to help parents out with hand washing:

  1.   Model good hand washing practices with a bit of drama.  You have to be a bit of a ham, and remember that kids need simple but dramatic explanations for information to sink in.  Something along the lines of “Oops, I FORGOT to wash my hands!  I will be RIGHT back as soon as I find some soap and water.  Do you know where it is?  Raise your vocal inflection, and use some gestures like stretching out your fingers.  Now say “That is SOOOOO much better.  My hands feel good and clean”.  Interrupt lots of things you are doing with a calm departure to wash your hands.  But make sure they hear you say where you are going and why.
  2. Get soap that they like.  Whether it smells good to them, has a character they love on the bottle, or is foamy or even tinted, soap they like is soap they will use.  Liquid soap is so much easier for young children to handle than bar soap.
  3. Make it easy.  They should be able to reach the water by using a spout extension, and possibly help you get the soap on their hands.  Paper towels that pop out of their holder ready to dry hands are easy to hold and the best way to avoid spreading germs.  Unless a cloth towel is changed very very frequently, it isn’t the cleanest choice. I treat a child whose mom is a cardio-thoracic surgeon.  There is a hands-free soap dispenser and a box of pop-up towels in her main floor powder room.  Enough said.
  4. Ask your partner and other people in the house if they have washed their hands when your child is paying attention to you and watching them respond.  Young children don’t take notice of these practices of others unless you point them out.  Hearing about who washed their hands, and hearing their enthusiastic replies, sends home the message that everyone washes their hands.  It is what we ALL do.
  5. Spin it positively.  Some children really become frightened if you message things about getting sick.  The message is to stay healthy.  Keep it that way.
  6. Make a habit of it.  Infection control staff know that making actions into habits is the best way to ensure safety.  Create new rules about washing hands throughout the day, and gently insist on them.  They will become habits.  Good ones.

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How Using Dr. Karp’s Fast Food Rule Transforms Kids With Special Needs

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Yes, I said the word transform.  I know that hyperbole isn’t always appropriate when you are a therapist (we try to hedge our bets with predictions), but I am willing to go out on a limb in this instance and say that learning this single Happiest Toddler on the Block technique will make a difference with any child with special needs that functions with over a 12-15 month cognitive level.  Will it work with older children?  Absolutely.  Done right, it will also work on spouses and co-workers!

What is the Fast Food Rule?  You can read more about it here Help Your Child Develop Self-Regulation With Happiest Toddler On The Block but the simplest way to explain it is that when you have an upset person, they get to express themselves first, then the adult paraphrases the upset person’s expression with about 1/3 of the emotion that was used.  The paraphrasing is done at the level of comprehension of the upset person.  This means that someone who has a very low language level and is very upset may only hear “You say NO NO NO”.  Remember that any degree of agitation immediately lowers language comprehension IN EVERYONE.  Even you.

That’s it.  The phrase may have to be repeated a few times until the adult observes signs that the upset person’s agitation is decreasing (not necessarily over).  What are those signs?  A decrease in screaming volume or intensity, more eye contact, stillness of the body, turning to the adult rather than turning away, etc.  If the problem isn’t clear, altering the phrase is OK.  No harm done if you get it wrong; try again to state what their problem is.

ONLY WHEN THE UPSET PERSON HAS DECREASED THEIR AGITATION IS IT PERMISSIBLE TO OFFER A SOLUTION, OR EVEN CONSOLATION.

Why?  Because until the upset person REGISTERS that the adult understands the nature and the degree of stress, they will continue to protest to make their point.  It doesn’t matter if the point is pointless.  All the better.  Being understood is more important than being corrected.  Always.

Because young children’s brains are immature, their agitation may start up again after the problem is solved.  This is neurological, not psychological.  Rinse and repeat the FFR, and come out on the other side calmer.

Why does this transform the life of a special needs child?

Kids with special needs often need to be more regulated than the average child.  They can be unsteady, difficult to understand even when calm, have medical issues that get worse when they are agitated, and fatigue rapidly on a good day.  Being upset makes safety, endurance, sensitivity and sensory seeking worse.  Sometimes much worse.

If your child or your client has any of these issues (and I have yet to work with a child with special needs that doesn’t have ONE or more of them), then you need to learn the FFR today and use it consistently.

  • Kids with cerebral palsy can move with better safety awareness and expend less energy.
  • Kids with hyper mobility are also safer, less fatigued and can focus on movement quality.
  • Children with sensory processing issues are more modulated, less aversive or sensory seeking.
  • Kids with ASD do less self-stimulation and have less aggressive behaviors.

 

The biggest obstacle for me?  Fear of using Dr. Karp’s Toddler- Ese language strategy, which sounds infantile to the ears of an adult, because I thought that I sounded like an idiot in front of parents (who were paying me a lot of money to treat their child).  It turns out that not being able to calm a child makes me look much more like an idiot, and effectively getting a child calm and focused makes me look like a skilled professional.

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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.

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 so 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 as a read-only download on Amazon.com

It is available as a click-through and printable download  on Your Therapy Source!  

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!

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Why Parents Used The Fisher-Price Rock and Play Sleeper: Desperation and Confusion

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As a Happiest Baby on the Block (HBOTB) educator, I was thrilled to hear about the product’s recall, and horrified at the number of deaths attributed to this device.  The media spent a lot of time pointing out that the company’s marketing included clear messaging that suggested that children could sleep in it, in defiance of the national pediatrician’s association’s recommendations that children sleep on a flat surface without padding or bedding until they are old enough to move to prevent suffocation.

Many of the stories online made it sound like the company must be out of their mind, or the parents must be idiots.  I don’t think that either thing is true.   I think I know why well-meaning parents listened to the printing on the box and not the hurried message/tri-fold handout from their child’s doctor:  they simply want some sleep.  They see how calm their child is in this device, and don’t know what else to do to get some peace and quiet.  Fisher-Price knew what I know; parents can be desperate and want a convenient solution to their struggles.  Their packaging mentioned both the warning and showed sleeping children in the device.

Babies are amazing, but babies don’t sleep through the night right away.  They often don'[t sleep through the night in the first 6 months.  That is a long time for parents to deal with their own chronic sleeplessness.  Many families are dual-earners, and many parents today are over 30.  Losing a night’s sleep at 23 and losing a night’s sleep at 39 are completely different.  One makes you sluggish.  The other makes you feel like you were hit by a truck.  Have that happen to you for a week, and you cannot handle screaming or exhaustion very well.  Really.  Do that for 6 months, and you might agree to almost anything anyone suggests to get a little more sleep.  When your child is so peaceful in that carrier or infant positioner, you may not want to risk waking them.  Do it anyway.  And learn how to get them back to sleep more easily.

One reason why I became a HBOTB educator was my sympathy for the parents I worked with as an occupational therapist.  These are kind people, intelligent people, but people who were not given great strategies by their pediatricians.  They were told what to do, but not HOW to do it.  Pediatricians aren’t given the time to walk parents through good techniques, even if they know them.  And a lot don’t know how to calm babies.  They know how to cure babies.  Dr. Karp’s techniques tell parents  how.

Since the arrival of the SNOO, things have become a bit simpler.  The need for education hasn’t ended, because unless you intend to spend the first 12 weeks at home each and every day, parents need to know how to calm their babies without a device.  Read Why You Still Need the 5S’s, Even If You Bought a SNOO   if you would like to know more about how HBOTB will save your sanity during the day.

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Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing

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Therapists always try hard to be optimistic when discussing their pediatric client’s future.  Why not?  Kids have amazing potential, and we aren’t fortune tellers; there are so many things that can go right.

As therapists, we also should share the reality of how bad choices create unfortunate consequences.  Among them are the long-term results of falls, especially head injuries.  Kids fall, kids trip, kids walk into things.  All kids, and for much of early childhood.  The hypermobile child will have more episodes of injury, often has greater injury occurring in each episode, and frequently experiences a slower or less complete recovery from injury.  This isn’t a criticism of parents, kids, or even acute medical care.  It is the reality of living with a condition, often a syndrome, that has effects beyond just loose joints.

This can include connective tissue disorders that create weak skin, ligaments, and tendons, decreased pain registration, delayed protective reactions when falling, and cognitive or behavioral complications that make learning and controlling actions more difficult.  Hypermobile kids often spend more years in an unstable state in which they need assistance and supervision.  And more years when they are vulnerable to serious injury.  A head injury or a spine injury isn’t an “unfortunate” event.  It is frequently a life-changing event.  The course of education and employment can be forever altered.  For the worse.

In a clinic or school setting, your therapist is bound to guidelines that indemnify them and the facility. While they cannot control what happens at home, you should know what to do to make your home safer for a child with hypermobility.  It begins with your environment, then you change your responses, then your build  your child’s ability to incorporate safety awareness into their day.

  • Create a safe but accessible home.  This expands on “baby proofing” to include railings set at a height that allow your child to push up rather than hang on them.  Removal of loose rugs and adding padded floor surfaces in common areas, especially areas where they are climbing or running.  Bathrooms are the location for many injuries once children become independent in toileting or bathing.  Instead of supervising them forever, create a safe place with hidden grab bars (there are toilet paper holders and towel racks that are actually grab bars) and non-slip flooring.  Place needed items within easy reach without climbing.
  • Teach safe movement from the start.  Children that learn how to move versus children that are passively moved will have more safety awareness.  For children that still need a lot of help, narrate your moves and weave in safety messages.  It will sink in.  Finally, don’t allow unsafe moves, even if they didn’t hurt themselves.  Tell them to try it again the safe way.  Read Joint Protection And Hypermobility: Investing in Your Child’s Future to learn what to teach them.  Children are unable to anticipate the results of their actions.  This is why we don’t let 12 year-olds drive or let 5 year-olds cross the street alone.  Sometimes the reason they do things our way is because we said so.  Until they are old enough to understand the “why”.
  • Share your thought processes with children as soon as they can wrap their heads around things.  Even kids in preschool can follow along with the idea that too many “boo-boos” will stop them from being able to play.  Older kids can learn that the right chair helps them stave off fatigue until they finish a game.  Children don’t pick up on subtle cues, so don’t be subtle.  Be direct.
  • Ask your therapists for specific safety advice, and then carefully think through their answers.  The truth is that some therapists are more safety-aware than others.  I have been told that I am one of the most vocal therapists on a team when regarding safety issues.  Perhaps it is because I spent 10 years working in adult rehab, treating patients for problems that started decades before I met them.  I have seen what overuse and poor design has cost people.  By then it is often too late to do much more than compensation and adaptation.  I am committed to prevention with my pediatric clients.  The cost is too high not to say something and say it loud.

Looking for more practical information on raising your 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 e-book, filled with strategies to empower parents with useful knowledge written in plain English.  Learn about correct positioning to improve control and how to make your home safer for your child.  Learn how to pick out the best seating, clothing, and even tricycles to maximize independence.

This unique book is available as a read-only download on Amazon or as a click-able and printable e-book on Your Therapy Source.  Don’t have a Kindle?  Don’t worry; Amazon’s downloads are easy to read on any tablet or phone.

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Should You Install a Child-Sized Potty for Your Special Needs Child?

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Affordable accessibility and no institutional appearance!

I know that some of you don’t even realize that such a thing exists:  a toilet sized for preschoolers and kindergarteners!  Well, you won’t find it in Lowe’s or Home Depot on the showroom floor, but you can buy them online, and it is an option to consider.  Here are the reasons you might put one in your child’s main bathroom:

  1. You have the space already.  Some homes are large enough to allow each bedroom to have its own bathroom.   If you have the option, it might be worth it during renovations.  It shouldn’t add considerably to the overall cost, and it should not be that difficult to swap out when your child grows.  If you have a bathroom near the playroom, that might be another good location for this potty.  Most older kids and adults can make it to another half-bath on that floor, but it might be perfect for your younger child and his friends!
  2. Your child is terrified of the standard-height potty.  Some kids are unstable, some are afraid of heights, and some have such poor proprioception and/or visual skills that they really, really need their feet on the ground, not on a footstool.
  3. Your child was a preemie, and their growth pattern indicates that they will fit on this toilet comfortably for a while.  Some preemies catch up, and some stay on the petite size.  Those children will be able to use a preschool-right potty into early elementary school.  Even if your preemie is average in size, they may have issues such as vision or sensory sensitivity that will make this potty a great idea for a shorter time.

I am just beginning to build my materials to do in-home consultations as a CAPS, but I think that an underserved population are parents of special needs kids that would benefit from universal design and adaptive design.  This toilet would come under the category of adaptive design, and it is an easily affordable solution for some children.  Having more comfort on the toilet speeds up training for many kids.  It also decreases the aggravation of training and monitoring safety for parents.  I am very committed to helping the entire family have an easier time of things like toilet training.

Think about what your family’s needs and capabilities are, and if you are planning to remodel or build a new home, consider finding a CAPS professional in your area to help you make your home as welcoming for your special needs child as possible!  For more information, read How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child.

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How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child

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I finally did it; I got my CAPS certification!  I know, you are asking yourself “What does a pediatric occupational therapist want with an Aging-In-Place certificate?”  Well, as it turns out, many of the barriers and home access problems that require redesign or better design for older adults are also issues with children dealing with developmental issues.  And they deserve the most functional home they can possibly have!

I treat children in their homes, so I see a wide variety of situations.  Here are a few of the most common problems I encounter:

  1. Entries and stairs that don’t have railings at a helpful height for children with motor control issues.  If your child is likely to struggle with stairs for a while, adding a lower railing on both sides of the stairs is very, very helpful.  They can be removed later on, but since you cannot alter the risers (the height of the steps) without major construction, do what you can to give your child a secure handhold.
  2. Slippery floors.  Tile can be treated to make it just a bit tackier, but not feel like gravel.  Online sellers will offer this, and you can apply it yourself if you are skilled, or hire a tile company to coat your tile for you.
  3. Right-height work areas.  Young children with motor issues often need the play table to be the correct height for them.  Their reach and grasp, as well as their balance, improves when they are sitting well.  But they grow.  What can you do?  I suggest buying an inexpensive wooden table and cutting the legs until they are the right height.  When your child outgrows it, buy a new table and trim the legs as needed.   You can add brackets on the leg joints to add stability to an inexpensive table.

If you are in the market for a new home, a CAPS professional can help you think about accessibility as a factor when shopping for real estate.  Although the easiest way to achieve universal access is to build a new home, there are homes that are easier to adapt, and home that are nearly impossible.  Being able to see what a house offers is more than location, location, location.

Know what the implications of your child’s diagnosis means for accessibility and function.  Children with cystic fibrosis, cerebral palsy, or muscular dystrophy will likely do better in a ranch house or a house with an elevator.  Don’t think you have the room for an elevator?  You might, you might not, or you might install a lift instead.  Your CAPS consultant can help you look at all the options.  Improving bathing, grooming and safe play spaces is on the list of things that a CAPS professional can address.  Read Should You Install a Child-Sized Potty for Your Special Needs Child? to find out how this simple and affordable swap could make life easier for both of you.

I will be exploring all of my options for consulting as a CAPS, but my training as an OTR and my background in adult and pediatric home care means that I will be as excited to help young families as to help older people.  Who knows: I may decide to offer a multi-generational package of services!  Stay tuned for more information and suggestions for accessibility!

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Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way

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Hypermobile children end up in some impressively awkward positions.  It can feel uncomfortable just to look at the way their arms or legs are bent.   It can be an awkward position with any part of the body; shoulders that allow an arm to fold under the body and the child lies on top of the arm, crawling on the backs of the hands instead of the palms, standing on the sides of the feet, not the soles.

The mom of a child I currently treat told me that this topic is frequently appearing on her online parent’s group.  Mostly innocent questions of “Does your child do this too?”  and responses like “At least she is finally moving on her own”  When I met her child, she was rolling her head backward to such a degree that it was clearly a risk to her cervical (neck) spine.  We gradually decreased this behavior, and have almost eliminated it.  This child is using it to get attention when she is frustrated, not to explore movement or propel herself around the room.  Time to teach other ways to get an adult’s attention and express frustration.

Because of their extreme flexibility and the additional gradual stretching effects of these positions, most children will not register or report pain in these positions.  Those of us with typical levels of flexibility can’t quite imagine that they aren’t in pain.  Unfortunately, because of their decreased proprioception Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and decreased sense of stability, many hypermobile kids will intentionally get into these awkward postures as they seek more sensory input.  It can actually feel good to them to feel something!

The fact that your child isn’t in pain at the moment doesn’t mean that there isn’t damage occurring as you watch them contort their bodies, but the underlying inflammation and injury may only be perceived later, and sometimes not for years.  Possibly not until tissue is seriously damaged, or a joint structure is injured.  Nobody wants that to happen. Read   Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.  If you think that there is a chance that your child is more than just loose-limbed, ask your therapist to read Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue? and get their opinion on whether to pursue more evaluations.  Some causes of hypermobility have effects on other parts of the body.  An informed parent is the best defense.

Here is what you can do about all those awkward postures:

  • Discuss this behavior with your OT or PT, or with both of them.  If they haven’t seen a particular behavior, take a photo or video on your phone.
  • Your professional team should be able to explain the risks, and help you come up with a plan.  For the child I mentioned above, we placed her on a cushion in a position where she could not initiate this extreme cervical hyperextension.  Then we used Dr. Harvey Karp’s “kind ignoring” strategy.  We turned away from her for a few seconds, and as soon as she stopped fussing, we offered a smile and a fun activity.  After a few tries, she got the message and the fussing was only seconds.  And it happens very infrequently now, not multiple times per day.
  • Inform everyone that cares for your child about your plan to respond to these behaviors, to ensure consistency.  Even nonverbal children learn routines and read body language.  Just one adult who ignores the behavior will make getting rid of a behavior much, much harder.
  • Find out as much as you can about safe positioning and movement.  Your therapists are experts in this area.  Their ideas may not be complicated, and they will have practical suggestions for you.  I will admit that not all therapists will approach you on this subject.  You may have to initiate this discussion and request their help.  There are posts on this blog that could help you start a conversation.  Read Three Ways To Reduce W-Sitting (And Why It Matters) and Kids With Low Muscle Tone: The Hidden Problems With Strollers  and How To Reposition Your Child’s Legs When They “W-Sit”.  Educate yourself so that you know how to respond when your child develops a new movement pattern that creates a new risk.  Kids are creative, but proactive parents can respond effectively!!

Looking for more information on hypermobility?

I wrote 2 e-books for you!

My first, The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is your guide to helping your child develop independence and safety from birth through age 5.  Filled with practical strategies to help parents understand the complexities of hypermobility, it empowers parents every step of the way.  In addition to addressing all the basic self-care skills kids need to learn, it covers selecting chairs, trikes, even pajamas!  There are checklists for potty training and forms that parents can use to help communicate with teachers, therapists, family members…even doctors!

“Dr. Google” isn’t helping parents figure out how to help their kiss with PWS, SPD, ASD, Down syndrome, and all the other diagnoses that result in significant joint hypermobility.  This is the book that provides real answers in everyday language, not medical jargon.

Read more about this book, and get a peek at part of chapter 3 on positioning for success by reading The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

This unique e-book is available on Amazon as a read-only download or on Your Therapy Source as a printable and click-able download.  Feel more empowered and confident as a parent…today!

Is Your Hypermobile Child Older Than 5?  This is the E-book for You!

The jointSmart Child:  Living and Thriving With Hypermobility Volume Two: The School Years is a larger, more comprehensive book that helps the parents and therapists of older children ages 6-12 navigate school needs, build full ADL independence, and increase safety in all areas of life, including sports participation.  Need to know how to pick the right chair, desk, sport, even musical instrument?  Got it.  Want to feel empowered, not aggravated, at medical appointments?  Got that too!  There are forms and checklists that parents can use to improve school meetings and therapists can use for home programs and professional presentations.  Read more about it here: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

Get my newest book today on  Amazon .  Don’t have a Kindle?  Don’t worry:  Amazon has an easy method to load it onto your iPhone or iPad!

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Tub Safety For Special Needs Children

Bathtime is usually a fun experience for young children.  Toys, splashing, bubbles.  But it’s not always fun for parents.  If your child has issues with sensory sensitivity, sensory seeking or hypermobility, you can feel like a one-armed paperhanger; juggling toys, washcloth and child!

One solution is to use a bath seat.  A word of common sense first:  never leave a child unattended in any type of bath seat.  Just because these devices improve stability, they don’t remove all the risks of bathing in a tub.  Young children need to be supervised at all times.  But a tub seat does help a special needs child remain sitting and stable, and that can really help parents during bathing.  Here are the positive effects of using a bath seat or tub insert:

Kids with sensory seeking or sensory sensitivity can find the expanse of the standard tub overstimulating, and in response, they may become agitated or fearful.  The youngest kids can’t tell you how this feels.  They just act up.  Using a bath seat or a tub insert can allow these children to stay in the tub long enough to be washed, and help them stay calm and relaxed.  Since bath time is usually before bedtime, that is a big plus!

For kids with instability, the bath seat or insert can prevent them from injuring themselves if they tip or lean too much.  They could even build their ability to sit up if the seat is well-chosen for their needs.  These kids need to acquire a sense of independence, and if they are given the right support, they can start to sit without an adult holding them.  They may be able to use both hands more freely, developing coordination for learning to wash themselves and confidence in their independence.

Selecting the correct equipment can be easy or challenging.  After determining what level of assistance your child needs, figure out if your child fits well in the seat you are looking at.  Some seats are made for very small children.  If your child is older or larger, keep looking until you find equipment for them.  Therapy catalogs and sites have equipment for children with significant difficulties in holding their head up or maintaining a sitting position.  These are more expensive than mass-market items, but they are often adaptable and you can remove parts as your child builds their sitting skills and safety.

Looking for more information on making your home safer for your child?  Read Should You Install a Child-Sized Potty for Your Special Needs Child? and How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child.  I am a CAPS as well as an OTR.  This is a natural progression, as occupational therapists are always thinking of safety and independence for their clients, all the way from infancy to end-of-life issues.

For more information about self-care and the special needs child, check out Kids With Low Muscle Tone Can Sit For Dinner: A Multi-Course StrategyImproving Daily Life Skills for Kids With Special Needs, and OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues.

Are you toilet training your special needs child?  Do you worry that it may never happen?  I wrote the e-book for you!  The Practical Guide To Toilet Training Your Child With Low Muscle Tone is filled with readiness tips, techniques to find the best potty seat, and techniques to make learning faster and easier for both of you!  It is available on my website tranquil babies, and on Amazon and Your Therapy Source )a terrific site for parents and therapists).  Read more about this unique guide here: The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

 

Teaching Safety Awareness To Special Needs Toddlers

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Parents anxiously wait for their special needs infants to sit up, crawl and walk.  That last skill can take extra months or years.  Everyone, and I mean everyone, uses walking as a benchmark for maturity and independence.

They shouldn’t.  A child with poor safety awareness isn’t safer when they acquire mobility skills.  Sometimes they are much less safe.  Yes, they may be able to move without your help, but they may need to be more highly monitored and given more assistance to learn how to be safe.  They are exploring their environment and their new skills that took them a long time to develop.  They have been wanting to climb on the couch for months.  Now they can.  Getting down the “safe” way isn’t as important to them, and maybe not as easy as sliding or rolling off.  Oops.

What can parents do to help their child be a safer (notice I didn’t say “safe”) ambulator, crawler, cruiser, etc?  

  1. Talk about safety before they are independent.  Will they understand what it means?  Probably not, but your tone and your insistence on how movement is done says that you value safety and you want them to do the same.  Kids learn from all of our actions.  Make this one familiar to them by being very obvious and explicit.
  2. Take your physical therapist seriously when she or he teaches you how to work on core strength and balance skills.  Yes, I still maintain that safety is more than a sensory-motor skill, but having the best possible sensory and motor skills is important.  Having good safety awareness and safety behaviors without these skills will make a child more vulnerable to falls and injuries.
  3. The same goes for sensory processing activities.  If your child cannot perceive the movement of falling, the tactile and proprioceptive change as they crawl or step on something, or tolerate multiple sensory inputs at once, they are much less safe, even with good strength and coordination.  Really.
  4. Know your child’s cognitive and social/emotional skills.  Impulsive children are less safe overall.  Children that cannot process your instructions or recall them without you are less safe.  Children that enjoy defying you more than they want to avoid falling are less safe.  If you know any of these things, you can gauge safety and react more appropriately.  You will be less frustrated and more helpful to them.
  5. Reward safe execution and do not reward unsafe behavior.   My favorite way to avoid punishment but also to send my safety message home?  Not providing eye contact or much at all in the way of conversation as I stop unsafe actions, and either removing a child from an unsafe situation or assisting them in using the safe method to execute their move.  They get no satisfaction from seeing me react strongly, and they get the message that I am not accepting anything but their best safety skills as they move.
  6. Stop a child that is moving in an unsafe way, and see if they can recall and initiate the safe choice before assisting.  You don’t want to teach them that only you will make them safe and they need someone to be safe out there. They have to learn how to assess, react and respond, and all children can build their skills.  Some need more teaching, and some need more motivation to begin to take responsibility for their safety.  Give them both.

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Have a Child With Low Tone or a Hypermobile Baby? Pay More Attention to How You Pick Your Little One Up

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Carrying and holding kids is such a natural thing to do.  But when your child has hypermobility due to low muscle tone, joint issues or a connective tissue disorder, how you accomplish these simple tasks makes a difference.  Your actions can do more than get them from one position or location to another: they can build a child’s skills, or they can increase the risk of damage by creating excessive flexibility or even accidentally injure a child’s joints.

How could something so simple be both a problem as well as an opportunity?  Because hypermobility creates two issues that have to be addressed:  Less strength and stability at vulnerable joints, and less sensory feedback regarding pain and position sense in your child.  The ligaments, tendons, muscles and joint capsule at every hypermobile joint are more likely to be damaged when excessive force is placed on them.

Knowing how much force is too much isn’t easy without some instruction from a skilled therapist.  Depending on your child to react quickly and accurately to accidental stretch or pressure by crying or pulling away isn’t a good idea.  Their excessive flexibility reduces firing of receptors deep within all of these tissues in response to excessive force.  You may have looked at your child’s shoulders or ankles and think “That looks uncomfortable.  Why isn’t she fussing?”  This is the reason.  It means that you will have to be altering your actions to reduce the risk of harm.

As I mentioned earlier, this is also an opportunity.  It is an opportunity to teach your child about safe movement and positioning, right from the start.  Even the youngest child will pick up on your emphasis on alignment, control and safety.  They are always listening and learning from you every day, so incorporate effective movement into your handling and help your child build awareness and independence today!

Here are some strategies for you and your child:

  1. Always spread the force of your grasp over their body, and place your hands on the most stable locations, not the most flexible.  Lift a child through their trunk, not by holding their arms.  If they cannot steady their head, support it while you lift.  If you feel those little bones in their wrists and ankles moving under your grasp, support those joints instead of pulling on them.  Not sure how to do this correctly?  Ask your therapist for some instruction.
  2. Do not depend on a child’s comfort level to tell you how far a joint should stretch.   Think about typical joint movement instead.   If their hips spread very wide when you place them on your hip, think about holding them facing forward, with their knees in line with their hips, not pressed together.
  3. Give them time to move with you.  Those over-stretched muscles are at a mechanical disadvantage for contraction.  This means that when you tell a child to sit up, you have to give them time to do so before you scoop them up.  They aren’t  being defiant or lazy (I have not, in fact, ever met a lazy baby!).  This is a neuromuscular issue.
  4. Discourage unsafe movements.  Some children find that overstretching their joints gives them more sensory feedback.  It feels good to them.  This is not OK.  You will not be able to stop them every time, but they will eventually learn that their is a right way and a wrong way to move.  Knowing why isn’t necessary.  Yet.  Teach them to respect joint movement and use things like graded joint compression and vibration (your occupational therapist should be able to help you with this) to give them the sensory feedback they want.

Still concerned about safety?  Read Teaching Safety Awareness To Special Needs Toddlers  and  Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way to learn more methods to build independence without injury.

 

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Kids With Low Muscle Tone: The Hidden Problems With Strollers

jeremy-paige-146338-unsplashWhether you live in the city or the ‘burbs, you almost certainly use a stroller for your infant or toddler.  Even parents who use slings or carriers for “baby wearing”  find themselves needing a stroller at some point.  Why are strollers a problem for children with low muscle tone?  The answer is simple:  sling seats and ineffective safety straps.

The Challenges of a Sling Seat:

Strollers, especially the umbrella strollers that fold up into slim spaces, have a sling seat, not a flat and firm seat.  Like a hammock or a folding lawn chair, these seats won’t give a child a solid surface that activates their trunk.  When a child sits in a sling seat, they have to work harder to hold their body in a centered and stable position.

Why is that important when you are transporting your child in a stroller?

Because without a stable and active core, your child will have to work harder to speak and look around.  A child with low muscle tone or hypermobility that is in a sling seat may be inclined to be less active and involved, even fatigued from all that work to stay stable.  It could appear that they are shy or uninterested, but they might be at a physical disadvantage instead.  A collapsed posture also encourages compensations like tilting the head and rounding the back.  Will it cause torticollis or scoliosis?  Probably not, but it is certainly going to encourage a child to fall into those asymmetrical patterns.  Kids with low tone don’t need any help to learn bad habits of movement and positioning.

Safety strap location and strapping use in many strollers is less than optimal.  

There are usually hip and chest straps on a stroller.  Some parents opt to keep them loose or not use them at all, thinking that kids are being unnecessarily restrained.  I think this is a mistake for kids with low tone.

Good support at the hips is essential when a child with low tone sits in a sling seat.  It is their best chance to be given some support.  Chest straps are often not adjusted as the child grows.  I see two patterns:  Straps too low for an older child, and straps too high for a younger one.  The latter issue usually occurs when parents never adjusted the straps after purchase.  They left them in the position they were in from the factory.  Make sure that the straps are tight enough to give support but not so tight that a child is unable to move at all.  A child that is used to sliding forward may complain about having their hips secured so that they can’t slouch, but they will get used to it.

You may have to reposition a child with low tone from time to time as you go about your errands or adventures.  They often don’t have the strength or body awareness to do so themselves.  They could be in a very awkward position and not complain at all.  Check their sitting position as you stroll along.  Good positioning isn’t “one and done” with these kids, but doing it right will benefit them while they are in the stroller, and also when they get out!

Think about your high chair as well.  Read How To Pick A High Chair For Your Special Needs Child and A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair.

Looking for more information that could make things easier for your child and for yourself?

I wrote an e-book just for you!

The JointSmart Child: Living and Thriving With Hypermobility Volume One:  The Early Years is finally available!

Filled with more information on seating and positioning, how to select the right high chair, and how to help your child learn to get dressed and use a spoon or fork, it is the manual that parents have been looking for!  There are even chapters on how to improve connection and communication with family, your child’s siblings, teachers, and doctors.  Parents who know what to do and what questions to ask feel confident and empowered.

This unique book is available as a printable and click-able download at Your Therapy Source and as a read-only digital download on Amazon.com

Is your back killing you every time you lift your child out of their stroller or crib?

Parents of children with special needs often neglect their own bodies in service of their children.  This is a shame because there are things you can do to protect your body and make your life easier while caring for your child.  Read How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child and Universal Design For Parents of Special Needs Kids: It’s Important for You Too!.

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Picking The Best Bikes, Scooters, Etc. For Kids With Low Tone and Hypermobility

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Welcome to the world of faster (and faster) movement!  After mastering walking and possibly running, kids are often eager to jump on a ride-on toy and get moving.  If a child has had motor delays and has had to wait to develop the strength and balance needed to use a bike, they may be a bit afraid, or they may throw caution to the wind and try it all as soon as possible!

Selecting the best equipment for kids that have low tone or hypermobility doesn’t end with picking a color or a branded character ( Thanks, Frozen, for bringing up my Disney stock in 2013 almost single-handedly!).  In order to find the right choice for your child, here are some simple guidelines that could make things both easier and safer:

  1. Fit matters. A lot.  Hypermobile children are by definition more flexible than their peers.  Their limbs stretch, a lot.  This doesn’t mean that they should be encouraged to use pedals so far away from their bodies that their legs are fully extended, or use handlebars that reach their chins.  In general, muscles have their greatest strength and joints have their greatest stability and control in mid-range.  Fit the device to the child, not the other way around. Choose equipment that fits them well now,  while they are learning, and ideally it can be adjusted as they grow.  For the youngest or smallest kids, read The Best Ride-On Toy For Younger (or Petite) Toddlers and check out this great ride-on toy!
  2. Seats, pedals and handlebars that have some texture and even some padding give your child more sensory information for control and safety.  These features provide more tactile and proprioceptive information about grip, body positions and body movements.  You may be able to find equipment with these features, or you can go the aftermarket route and do it yourself.  A quick hack would be using electrical tape for some extra texture and to secure padding.  Some equipment can handle mix-and-match additions as well.  Explore your local shops for expert advice (and shop local to support your local merchants in town!)
  3. Maintain your child’s equipment, and replace it when it no longer fits them or works well.  Although it is more affordable to receive second-hand items or pass things down through the family, hypermobile kids often find that when ball bearings or wheels wear down, the extra effort required to use a device makes it harder to have fun.  The additional effort can create fatigue, disinterest in using the equipment, or awkward/asymmetrical patterns of movement that aren’t ergonomically sound.  Repair or replace either than force your child to work harder or move poorly.

Looking for more information about low tone and hypermobility?  

I wrote two e-books for you!

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years  and Volume Two:  The School Years are here!

Both have useful information to make caring for your hypermobile child easier, safer, and both build their independence throughout the day.  This is essential reading for parents of children with PWS, EDS, many forms of SPD, and Down syndrome.  These books cover how to teach your family  members, babysitters and teachers the best ways to work with your child, making life easier for BOTH of you!  They teach parents and therapists how to communicate with families, professionals and community members such as coaches and educators.  There are helpful checklists and forms that make picking the right chairs, clothes, even plates and utensils that make life easier for hypermobile kids.

Understanding that hypermobility creates more than unstable joints is key. Hypermobility creates emotional, social and sensory processing issues that affect a child’s development.  When parents have knowledge, they are empowered and can act as advocates rather than react to situations.  When therapists have a solid treatment plan, they can be amazing clinicians and help a child blossom!  These books are intended to teach new clinicians and parents of hypermobile kids how to make a difference in a child’s life right away.

Pick them up as a read-only download on Amazon or as a printable and click-able download on Your Therapy Source today!

Want more posts on hypermobility?  Read The Hypermobile Hand: More Than A Strength Problem , Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.

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How Parents Can Teach Healthy Body Boundaries To Young Children

 

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One of the greatest horrors of the Larry Nasser story is that parents were often mere feet away from these girls while they were being molested.  The people most invested in a child’s safety had no idea that anything violent was occurring, and these girls did not reveal their discomfort at the time.  These parents are beyond distraught now, and often filled with guilt.  I do not blame them for what happened.  They were deceived by Nasser and their children weren’t able to communicate their distress or confusion.

Parents who read these news reports are wondering how they would react; would they recognize abuse?  And they are wondering what to say and do to prevent this from ever happening to their own children.

My strong belief is that there will always be people like Larry Nasser in the world, and that children who have experience with being touched with respect could be more likely to recognize and report abusive touch, even when it comes from an authority or a family member.

I would like to share my best suggestions to teach children the difference between healthy touch and invasive touch, drawn from my practice as a pediatric occupational therapist who treats children with ASD and sensory processing disorders.  I would also like to say very clearly that there is never any reason for any occupational therapist to make contact with a child’s genital area.  Ever.  But since parents and caregivers perform diaper changes, dress children, and provide bathroom assistance, it is important to me to teach the following strategies for respectful contact in therapy so that children have a sense of what type of touch is unacceptable:

With non-verbal children of any age, I use a combination of observation, use of my own body language before I begin physical contact in therapy.  If children can make eye contact, I use visual regard to establish a connection, and I do not initiate physical contact quickly.  If they cannot meet my gaze, I read their cues, and often wait for them to come closer to me and reach out.  I use intermittent touch that avoids hands, face and feet initially.   Deep pressure is less alerting to the nervous system than light touch, so my contact is stable, slow and steady.  I will describe what I am doing therapeutically, in simple statements with calm tones, even if I am not sure that they will understand me.   I remove my contact when I see any indication of agitation, and before a child protests strongly.  What I am communicating is “I get you.  I see you and I respect you.  I will not force you, but I will invite you to engage with me”.

With children that can communicate verbally, I do all of the above strategies, and I ask permission.  Not always in complete sentences, and not always using the word “touch”.  I constantly tell them what I am going to do or what movement I am going to help them to accomplish.  It doesn’t matter if they fully comprehend my words; they can read the tone in my voice.  If they protest, I will voice their protest without criticism “You want no more _______; no more __________.  OK.”  I reconsider my approach, adjust, and either begin contact again or shift activities to build more tolerance and trust.

With slightly older children that can understand my question and can respond clearly, I will teach them that they have a choice about greetings.  I teach “Handshake, Hug or High-Five?“.  Children get to choose what kind of physical contact they wish to have when greeting me or other adults.  I must agree to their choice.  I encourage parents to teach their family members to offer this choice and to never force a child to kiss/hug or accept a kiss or a hug from anyone.  Children need to feel that they have agency over their bodies without criticism.

Anyone who remembers enduring a sloppy smooch or a crushing hug from a relative can relate.  You may or may not have actively protested.  It doesn’t matter.  Allowing an adult to have this form of contact with a child is not just an irritating experience for them.  It is a serious message that children of all genders are given:  The people that are in power have the right to do things to your body that you don’t like, and you have no right to complain.

Is this the message that parents intend?  Of course not, but that doesn’t make it any less a clear communication.  Larry Nasser and his kind depend on a combination of authority, status and compliance to perpetrate abuse, even if the child’s parents are in the room.  I believe that children who know that any uncomfortable touch from any adult, even those closest to them, can be refused, they are more likely to recognize and report abuse. They will be believed and they will not be shamed.

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Hypermobile Kids, Sleep, And The Hidden Problems With Blankets

 

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Everyone knows that sleep is important.  Research in sleep science (yes, this is a thing) tells us that our brains are working to digest the day’s learning, the immune system is active during sleep, and our bodies are repairing and renewing tissues and organs while we slumber.  As much as we need sleep, kids need it more.  They are building the brains and bodies they will carry into their future.  Children need good quality sleep as much as they need healthy food.

Helping children to sleep well is usually a combination of creating good and consistent bedtime routines, giving them a full day of physical action and warm social interaction, and developing a healthy sleep environment.  This means providing a sleep-positive environment and removing any barriers to sleeping well.  But giving kids the chance to get a good night’s sleep can be harder when a child has hypermobility.

Some of the challenges to sleep for hypermobile kids are sensory-based, some are related to activity during the day, and some are orthopedic.  Here is a list of things that make sleep more challenging for these kids:

  • Children with limited proprioception and kinesthesia due to low tone or excessive joint mobility can have difficulty shifting down into a quiet state for sleep.  They spend their day seeking sensory input;  not moving reduces the sensory information that makes them feel calm and organized.  Being still is a bit similar to being in a sensory deprivation tank, and it’s not always calming.  To understand more about the sensory concerns of hypermobility, take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children.
  • Some hypermobile kids have joint or muscle pain that keeps them up or wakes them up in the middle of the night.  Pain also makes kids more restless sleepers.  Restless sleepers thrash around a bit under the covers, becoming trapped in multiple layers of bed linens, or they can fall asleep in awkward positions that result in pain.
  • Children that are sedentary during the day for any reason (preference for tablet or video play, fatigue, pain, etc) may not be physically tired enough at night.  They may also be staying up too late at night.  Good sleep hygiene includes enough daytime activity combined with a conscious wind-down hours before bedtime occurs.
  • Some children with generalized low tone or joint hypermobility (especially with a connective tissue disorder) have issues with the partial collapse of their airway during sleep.  They snore or gasp in their sleep, and appear exhausted even after a full night’s sleep.  This is a serious issue.  Sleep apnea should be evaluated and addressed by a professional.
  • Hypermobile kids can get arms and legs caught in their bedclothes or between crib slats and mattresses.  Any layer can be a potential problem, from the sheet to the decorative afghan that Granny sent for his birthday.  For more information on hypermobility and safety, read Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing
  • Limbs can slide off the mattress during deep sleep and create strain on ligaments and tendons.   You and I depend on our brain to perceive an awkward position and take corrective action by waking us slightly.  The same child who “w” sits and slides off a chair without noticing is not going to wake up when her arm is hanging off the bed during sleep, even though the tissues are stretching beyond their typical range of motion.
  • Waking up to go to the bathroom or having to clean up a nighttime accident ruins sleep.  It isn’t uncommon to have older kids wear protective garments well past 5 at night, and some children need to practice holding in their urine to expand the bladder’s ability to hold it all night long.  This is something to discuss with your child’s urologist or pediatrician, since “holding it in” can be it’s own problem.  Read Teach Kids With EDS Or Low Tone: Don’t Hold It In! to learn more about the pitfalls of too much “holding”.

Here are some simple strategies that may improve your child’s sleep:

  • Try a duvet or a flannel sheet set to minimize the number of layers of bedclothes.
  • Use a rashguard suit instead of pajamas.  I am particularly fond of the zip-front style so that less force is needed to get arms in and out while dressing.  You can peel it off more easily.  The lycra creates sensory feedback that can support body awareness while keeping them cozy.  An all-in-one suit also gives a bit of support so that limbs don’t easily overstretch.  A little bit of proprioceptive input in a breathable fabric that can also generate a bit of neutral warmth (from body heat) to keep tissues from getting too stiff.
  • Avoid footie sleepers that are too short.  Too-small footie sleepers create compressive forces on joints and could even encourage spinal torque.  Hypermobile kids will be the last ones to complain since they often don’t feel discomfort right away.  My preference is not to use these sleepers at all with hypermobile kids or kids with low tone.  See the next suggestion for another reason why I feel this way.
  • Make them take off those footie sleepers when they wake up and walk around.  As fabric twists and children stand/walk on the fabric, not the soles, it creates a safety risk underfoot.  Less sensory feedback and slippery soles!!  Get them dressed once they wake up.
  • Address sleep apnea, lack of daytime activity, and toilet training/scheduling rather than waiting for things to improve.  Not all young children achieve night time dryness on pace with other children, but ignoring the impact isn’t going to help things.
  • Carefully consider safety issues before you try a weighted blanket.  Originally sold for kids on the autistic spectrum and for kids with sensory processing disorders without muscular or orthopedic issues, these blankets have become popular with other groups.  The biggest concern for hypermobile kids is that placing weight (meaning force) on an unstable joint over time without conscious awareness or adult monitoring is a safety issue.  It is possible to create permanent ligament injury or even subluxation of a joint with weights, depending on a limb’s position, the length of time weight is applied, and the amount of force placed on a joint.  Talk the idea of a weighted blanket over with your OTR or PT before you order one of these blankets.
  • Consider aromatherapy, gentle massage, white noise machines, and other gentler and less invasive sleep strategies to help your child sleep well.  Consider techniques like gentle joint compression and/or deep pressure brushing, but ask your therapists how to adapt it for your child’s specific needs  Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?.  For kids who sleep well but wake up stiff, learn how to use gentle massage and possibly heat to help them get going.  Do not ignore pain at bedtime, or complaints of pain on awakening.  These are important clues that you need to address.   Ask your occupational therapist or your pediatrician for ideas to adapt your bedtime routine (your OT)  or your pain plan ( your MD) to handle nighttime pain.
  • Try K-Taping or Hip Helpers for stability.  Kineseotape stays on for days and gives joint support and sensory input while your child sleeps.  Hip Helpers are snug lycra bike shorts that limit extreme hip abduction for the littlest kids when their legs rotate out to the sides excessively.  They gently help your child align hip joints correctly.  As with weighted blankets, I strongly recommend consulting with your therapists to learn about how to use both of these strategies safely.  When used incorrectly, both can create more problems for your child.  Simply put, any strategy that could help could also be misused and create harm.

Need more information about managing hypermobility in children?  Take a look at Should Your Hypermobile Child Play Sports? , Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies and Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior

Announcing my new e-books on pediatric hypermobility!

There are now TWO e-books for the parents and therapists of hypermobile kids ages 0-5 and 6-12!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is the first e-book in the series.  It is a practical manual for parents and therapists.  Learn more about how hypermobility affects sensory and behavioral development as well as motor skills, and how to pick the right equipment to help a child thrive!  There are ideas for every ADL skill and even strategies to talk with your family and doctor about your child’s needs.  Read more about this book at The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!  You can buy this unique new book as a clickable and printable download at Your Therapy Source or as a read-only download at Amazon.com

The JointSmart Child: Living and Thriving With Hypermobility Volume Two:  The School Years takes things further and deeper.  It is a larger book, filled with information to make life easier, safer and more independent for kids 6-12.  Learn how to pick the best chairs, desks, bikes, even the best sports and musical instruments for a child.  Understand the best ways to communicate with your child’s teachers and medical providers to get the results you want.  This book has an extensive appendix with forms and handouts for parents and therapists alike.  There are even some simple recipes to build fine motor and sensory skills through cooking.  It is available on Amazon and on Your Therapy Source  and you don’t need a kindle to download it; they have a simple way to load it on your phone or iPad!  Read more about this book here: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

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Should Hypermobile Kids Use Backpacks?

 

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Yo! A photo shout-out to my old life in Brooklyn! I loved coming to work to see this iconic view!

It is back-to-school season here in the US.  One of the items on shopping lists is a new backpack.  But for kids with low muscle tone or hypermobility, backpacks can be more than a way to carry books and water bottles.  They can be a source of pain, headaches, even numbness in hands and fingers.  The important question isn’t how to lighten the load of a heavy backpack.  It is whether these kids should be using them at all.

The standard recommendations from occupational therapists and orthopedists regarding backpacks are simple:  lighten the load, use both straps (select one with wide straps), and make sure the heaviest items are placed close to the body.  All good suggestions.  But if a child already has pain or weakness around their spine and/or shoulder joints, reduced stability and endurance, and limited ability to judge posture and force, then the picture changes.  Using a backpack may be a significant physical risk, no matter how well designed or used.  And even when armed with good strategies, many kids will insist that it isn’t possible to go without one.

Here are some suggestions that further minimize the risk of injury but can still be acceptable to kids who may be sensitive about being perceived as different if they don’t have a backpack:

  • Request a set of the heaviest books for home use.  This can be part of an IEP or a 504 plan, or the school may be willing to do so without anything formal on paper.
  • Request a locker on every floor or every section of a large school.  They won’t have to drag every item to every class if they can store things in more than one place.  Again, a 504 plan or and IEP can include this, making it happen without a lot of fuss from your child.  Bonus round:  Set up your home in the same way, to get your child into the habit of energy and joint conservation strategies.  Make them think like an occupational therapist….!
  • Select the smallest size backpack possible.  Stores like Land’s End and L.L. Bean  are great sources for a variety of backpack sizes.  Bigger backpacks encourage kids to load more stuff inside.
  •  Have your child carry lighter and fewer items.  Pick the smallest water bottles and travel sizes of anything they really need.  Think “weekend in Paris on a shoestring” not “trekking the Himalayas“.  At least they have a backpack like the other kids.  Sources like The Container Store and even your local Walmart will have tiny containers for the things they need.  Offer to refill these containers or replace them right away.  A shelf of small water bottles or a cool but tiny hone charger could make the difference.
  • Teach your child to carry their pack in their arms, close to their chest, instead of wearing it.  I know that sounds a little weird.  But if the pack is small to medium in size, this is the best way to carry it to reduce strain on the back and neck.  And they still have a backpack like the other kids.  It might be a long shot to get a kid to change how they carry a pack.  Some kids can respond to reminders of how awful it is to be in pain, and how not being able to sleep or play sports is much worse than carrying that pack in their arms.
  • Considering a rolling case?  Not so fast.  The twisting of the spine and the use of one arm to drag a rolling case may be worse than using a backpack.  Then there is the lifting and lugging of a case up non-ADA stairs.  Out of the frying pan……

 

Want a guide for helping the school-age hypermobile child?

Here you go!  My newest e-book, The JointSmart Child:  Living and Thriving With Hypermobility Volume Two:  The School Years is now available on  Amazon .  No Kindle?  No problem!  Amazon makes it easy to download it onto your iPhone or iPad.  

Read more about this unique book that empowers parents and makes treatment planning easier for therapists here: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

 

Looking for more information about hypermobility, low tone and back-to-school planning?  Check out Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility? and Great Mechanical Pencils Can Improve Your Child’s Handwriting Skills.  Before you wonder if all that fidgeting and leaning over the desk is a behavior problem, read Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.  There are pencil grips that can really help kids with a weak grasp, so check out The Pencil Grip That Strengthens Your Child’s Fingers As They Write.

If your child is older and thinking about a career, please read Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues for some important strategies to get them thinking about how to navigate higher education and make plans that make sense.

Hypermobile Toddlers: It’s What Not To Do That Matters Most

 

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Do you pick up your toddler and feel that shoulder or those wrist bones moving a lot under your touch?  Does your child do a “downward dog” and her elbows look like they are bending backward?  Does it seem that his ankles are rolling over toward the floor when he stands up?  That is hypermobility, or excessive joint movement.

Barring direct injury to a joint, ligament laxity and/or low muscle tone are the usual culprits that create hypermobility.  This can be noticed in one joint, a few, or in many joints throughout the body.  While some excessive flexibility is quite normal for kids, other children are very, very flexible.  This isn’t usually painful for the youngest children, and may never create pain for your child at any point in their lifetime.  That doesn’t mean that you should ignore it.  Hypermobility rarely goes away, even though it often decreases a bit with age in some children.  It can be managed effectively with good OT and PT treatment.   And what you avoid doing at this early stage can prevent accidental joint injury and teach good habits that last a lifetime.

  1. Avoid over-stretching joints, and I mean all of them.  This means that you pick a child up with your hands on their ribcage and under their hips, not by their arms or wrists.  Instruct your babysitter and your daycare providers, demonstrating clearly to illustrate the moves you’d prefer them to use. Don’t just tell them over the phone or in a text.  Your child’s perception of pain is not always accurate when joint sensory aren’t stimulated (how many times have they smacked into something hard and not cried at all?) so you will always want to use a lift that produces the least amount of force on the most vulnerable joints.  Yes, ribs can be dislocated too, but not nearly as easily as shoulders, elbows or wrists.  For all but the most vulnerable children, simply changing to this lift instead of pulling on a limb is a safe bet.  Read Have a Child With Low Tone or a Hypermobile Baby? Pay More Attention to How You Pick Your Little One Up
  2. Actively discourage sitting, lying or leaning on joints that bend backward.  This includes “W” sitting.   I have lost count of the number of toddlers I see who lean on the BACK  of their hands in sitting or lying on their stomach.  This is too much stretch for those ligaments.  Don’t sit idly by.  Teach them how to position their joints.  If they ask why, explaining that it will cause a “booboo” inside their wrist or arm should be enough.  If they persist, think of another position all together.  Sitting on a little bench instead of the floor, perhaps? Read   Three Ways To Reduce W-Sitting (And Why It Matters) for more information and ideas.
  3. Monitor and respect fatigue.  Once the muscles surrounding a loose joint have fatigued and don’t support it, that joint is more vulnerable to injury.  Ask your child to change her position or her activity before she is completely exhausted.  This doesn’t necessarily mean stopping the fun, just altering it.  But sometimes it does mean a full-on break.  If she balks, sweeten the deal and offer something desirable while you explain that her knees or her wrists need to take a rest.  They are tired.  They may not want to rest either, but it is their rest time.  Toddlers can relate.

Although we as therapists will be big players in your child’s development, parents are and always will be the single greatest force in shaping a child’s behavior and outlook.  It is possible to raise a hypermobile child that is active, happy, and aware of their body in a nonjudgmental way.    It starts with parents understanding these simple concepts and acting on them in daily activities.

 

Wondering about your stroller or how to help your child sit for meals or play?  Read Kids With Low Muscle Tone: The Hidden Problems With StrollersThe Cube Chair: Your Special Needs Toddler’s New Favorite Seat!,  Kids With Low Muscle Tone: The Hidden Problems With Strollers and Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility for practical ideas that help your child today!

Wondering about your child’s speech and feeding development?  Take a look at Can Hypermobility Cause Speech Problems? to learn more about the effects of hypermobility on communication and oral motor skills.

Looking for information on toilet training, or for more general strategies for your child with Ehlers Danlos syndrome, generalized ligament laxity, or low muscle tone?  

I wrote 2 e-books for you!

My first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, gives you detailed strategies for success, not philosophy or blanket statements.  I include readiness checklists, discuss issues that derail training such as constipation, and explain the sensory, motor, and social/emotional components of training children that struggle to gain the awareness and stability needed to get the job done.  You will start making progress right away!

This e-book is available on my website tranquil babies, at Amazon, and at Your Therapy Source.

My second e-book, The JointSmart Child:  Living and Thriving with Hypermobility Volume One:  The Early Years, is a more comprehensive guide to managing hyoermobility in the child birth -5 years of age.  Filled with information regarding ADLs, safety awareness at home and at preschool or daycare, it is designed to empower parents, not just provide information.  Parents learn how to pick the right high chair, booster seat, even the right clothing to improve their child’s independence and reduce accidental injuries.  There are even forms to share with babysitters, family  members, even a form to make doctor’s visits more productive!

Find this book on Amazon as a read-only download, or buy it on Your Therapy Source  as a printable and click-able download.  Don’t have a Kindle?  Don’t worry!  Amazon makes it easy to read on your hone or iPad.

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How to Teach Your Child to Cut Food With a Knife…Safely!

ksenia-makagonova-274699After a child scoops with a spoon and pierces food with a fork, time seems to stand still. No one wants to hand a young child a knife. But they should (sort of). Here are some ideas to safely explore knife skills without holding your breath or end up still buttering their toast when they are in middle school!

1. Don’t use a knife. Use a spreader instead. Yes, those little things you put out next to the brie when you have a few adults over for wine and cheese. You can find handles that fit nicely in a child’s hand, improving their control. The spreaders that have a sculptured handle add even more texture for a secure grip. With a rounded blade, these are less dangerous in the hands of young children. Butter knives and plastic disposable knives are actually capable of cutting a child’s fingers. Not a good thing. Save them for Stage 2, where your child has already developed some skills.

2. Pick the right foods for cutting practice. Children who are learning to cut will usually provide too much downward pressure. They aren’t comfortable using a sawing motion at the same time as slight downward pressure, so adding more pressure is often the output you see in the initial stages of learning. Choose foods that can safely handle their initial awkward movements. Soft solids that are familiar to them, such as bananas and firmly cooked sweet potatoes, can be sliced easily. Avocados that aren’t totally ripe or whole carrots that have been cooked in the microwave are other good choices.

3. Demonstrate cutting while cooking dinner. Children really do need to see your demonstration and hear your comments, but they may find pretend play less motivating than watching the real deal. You can absolutely let them practice with you, cutting the same or similar foods if it is safe. Even if you have to come up with a creative way to use the smashed bananas or carrots resulting from their practice, your food should go into a family meal.

4. Take this opportunity to teach good hygiene. Everybody washes their hands before and after cooking. It’s just what we do. It’s the price of admission to the fun of food preparation.

5. Create a “recipe” that allows your child to be the chef. Young children love to spread their bread or sturdy crackers with softened butter, nut butter, cream cheese, or Nutella. They can prepare some for others int he family as well. We all love to see people enjoy our cooking, right? But be creative and remember to initially use foods that they know and love. Would you be excited to cook a meal with foods that you have never eaten? Possibly not.

This is an opportunity to teach a skill while enjoying time with your child. Have fun using these strategies for beginning knife skills!