For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

 

chen-hu-664399-unsplashI ran across a comment piece online that recommended parents teach their hypermobile  children to “listen to your body” to pace activities in an effort to avoid fatigue, pain or injury.  My reaction was fairly strong and immediate.  The sensory-based effects of hypermobility (HM) reduce interoception (internal body awareness)  and proprioception/kinesthesia (position and movement sense, respectively).  These are the  main methods of “listening” we use to know how we are feeling and moving.  For children with HM, telling them to listen to their body’s messages is like telling them to put on their heavy boots and then go outside to see how cold the snow is! 

Relying primarily on felt senses when you have difficulty receiving adequate sensory feedback doesn’t make…..sense.  What often happens is that kids find themselves quickly out of energy, suddenly sore or tripping/falling due to fatigue, and they had very little indication of this approaching until they “hit a wall”.  They might not even see it as a problem.  Some kids are draped over the computer or stumbling around but tell you that they feel just fine.  And they aren’t lying. This is the nature of the beast.

I am all for therapy that helps kids develop greater sensory processing (as an OTR, I would have to be!), but expecting HM kids to intuitively develop finely tuned body awareness? That is simply unfair. Kids blame themselves all too easily when they struggle.  What begins as a well-meaning suggestion from a person with typical sensory processing can turn into just another frustrating experience for a child with HM.

What could really help kids learn to pace themselves to prevent extreme fatigue, an increase in pain and even injury due to overdoing things?

  1. Age-appropriate education regarding the effects of HM.  Very young children need to follow an adult’s instructions (“time to rest, darling!”), but giving older kids and teens a medical explanation of how HM contributes to fatigue, pain, injuries, etc. teaches them to think.   Understanding the common causes of their issues makes things less scary and empowers them.  If you aren’t sure how to explain why your child could have difficulty perceiving how hard they are working or whether they are sitting in an ergonomic position, read Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for some useful information.  You could ask your child’s OT or PT for help.  They should be able to give you specific examples of how your child responds to challenges and even a simple script to use in a discussion.  Explaining the “why” will help children understand how to anticipate and prepare for the effects of HM.
  2. Consider finding a pediatric occupational therapist to teach your child postural, movement and interoceptive awareness, adapt your child’s learning and living environments for maximal ease and endurance, and teach your child joint protection techniques.  Occupational therapists are often thought of as the people that hand out finger splints and pencil grips.  We are so much more useful to your child than that narrow view!  For example, I have adapted desks for optimal postural endurance and decreased muscle tension.  This has immediate effects on a child’s use of compensations like leaning their chin on their hand to look at a screen.  OT isn’t just for babies or handwriting!
  3. Pacing starts with identifying priorities.  If you don’t have boundless energy, attention, strength and endurance, then you have to choose where to spend your physical “currency”.  Help your child identify what is most important to them in their day, their week, and so on.  Think about what gives them satisfaction and what they both love to do and need to do.  This type of analysis is not easy for most kids.  Even college students struggle to prioritize and plan their days and weeks.  Take it slow, but make it clear that their goals are your goals.  For many children with HM, being able to set goals and identify priorities means that they will need to bank some of their energy in a day or a week so that they are in better shape for important events.  They may divide up tasks into short components, adapt activities for ease, or toss out low-level goals in favor of really meaningful experiences.  Can this be difficult or even disappointing?  Almost certainly!  The alternative is to be stuck at an event in pain, become exhausted before a job is completed, or end up doing something that places them at higher risk for injury.
  4. Help your child identify and practice using their best strategies for generating energy, building stamina and achieving pain-free movement.  Some kids with HM need to get more rest than their peers.  Others need to be mindful of diet, use relaxation techniques, wear orthotics regularly, adapt their home or school environment, or engage in a home exercise program.  Learning stress-reduction techniques can be very empowering and helps kids think through situations calmly.    Sports can be an issue or they can be a wonderful way to build endurance and body awareness.  Read  Should Your Hypermobile Child Play Sports? for some ideas on managing pain, endurance and coordination.  Creating a plan together and discussing the wins and failures models behaviors like optimism and resourcefulness.  Children depend on adults to show them that self-pacing is a process, not an endpoint.

Looking for more information to help your child with hypermobility?  Take look at The Hypermobile Hand: More Than A Strength Problem and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.  My e-books on pediatric hypermobility are coming out soon!  Check back here at BabyBytes for updates.

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

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

Here are a few things to think about:

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

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Boost Pincer Grasp With Tiny Containers

These days I am getting pretty…lazy.  My go-to items are designed so that children automatically  improve their grasp or their posture without my intervention.  I am  always searching for easy carryover strategies to share with parents too.  As with most things in life, easy is almost always better than complicated.

My recent fave piece of equipment to develop pincer grasp in toddlers and preschoolers is something you can pick up in your grocery store, but you are gonna use it quite differently from the manufacturer’s marketing plan….

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Remember these?

Enter the tiny party cup, AKA the disposable shot glass!  Yes, the one you used when you played “quarters” in school.  The very same.  These little cups work really well to teach toddlers to drink from an open cup, but they are also terrific containers to promote pincer grasp in young children.  Drop a few small snacks into these little cups and discourage them from dumping their snack onto the table instead of reaching inside with their fingers.

No matter how small your child’s fingers are, they will automatically attempt a tripod or pincer grasp to retrieve their treat.  You should’t have to say much of anything, but it never hurts to demonstrate how easy it is.  Make sure you eat your snack once you take it out of your cup.  After all, grownups deserve snacks too!

These little containers are much sturdier than paper cups.  This means that they can survive the grasp of a toddler who cannot grade their force well.  The cylindrical shape, with a slightly smaller base than top, naturally demands a refined grasp.  The cups have a bit of texture around the middle of the cup (at least mine do)  which gives some helpful tactile input to assist the non-dominant hand to maintain control during use.  They are top-shelf dishwasher safe and hand-washable, in case you feel strongly that disposables aren’t part of your scene.

Has your child mastered pincer grasp?  These little cups are fun to use in water and sand tables as well.  Mastery of pouring and scooping develops strong wrist and forearm control for utensil use and pre-writing with crayons.

For more ideas on developing grasp, take a look at Want Pincer Grasp Before Her First Birthday? Bet You’ll Be Surprised At What Moves (Hint) Build Hand Control! and Develop Pincer Grasp With Ziploc Bags.

 

Why Pediatric Occupational Therapists Need The Happiest Toddler Techniques: Neurobiological Regulation

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Pediatric occupational therapists are usually all-in when it comes to using physical methods to help children achieve affective modulation.  We use the Wilbarger Protocol, Astronaut Training, Therapeutic Listening, and more.  But are we using Dr. Harvey Karp’s Happiest Toddler on the Block techniques?  Not so much.  All that talking seems like something a teacher or psychologist should do.  Folks, it’s time to climb off that platform swing and look at all of the ways children develop state regulation.  Early development is the time when children experience attunement with caregivers and create secure attachment.  But this is a learning process that grows over time and can be damaged by events and by brain-based issues such as ASD.  The Happiest Toddler on the Block techniques aren’t billed as such, but they are the best methods to create attunement and attachment while teaching self-regulation skills that I have found.  Combined with sensory-based treatment, progress can be amazing!

Research has told us that the way we interact with children and the way they feel has direct effects on neurotransmitters and the development of autonomic reactivity.  If you don’t believe me, check out Stephen Porges’ work on the ventral vagal component of the autonomic nervous system.

When we use The Fast Food Rule, Toddler-Ese and Patience Stretching ( Use The Fast Food Rule to Help ASD Toddlers Handle Change and Stretch Your Toddler’s Patience, Starting Today! ) to get a child focused, calm, listening, and recognizing that we “get them” even if we don’t agree with their toddler demands, we shift more than behavior.  We shift their neurophysiological responses that can become learned pathways of responding to stressors of all kinds.  We are using our social interactions to create neurobiological regulation.  I believe that the use of Happiest Toddler techniques can make a significant neurophysical change in a young child even before we put them on a swing.  I am going to go out (further) on a limb and say that if our interactions aren’t informed by understanding attunement and engagement, our sensory-based treatment might be seriously impaired.

Long story short:  if you aren’t using effective methods of developing social-emotional attunement and engagement with young children, your treatment isn’t taking advantage of what we now know about how all children learn self-regulation.  And if the child you treat has ASD, SPD, trauma from medical treatment, etc…..you know how important it is to use every method available to build the brain’s ability to respond and self-regulate.

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The Cube Chair: Your Special Needs Toddler’s New Favorite Seat!

 

 

Finding a good chair for your special needs toddler isn’t easy.  Those cute table-and-chair sets from IKEA and Pottery Barn are made for older kids.  Sometimes much older, like the size of kids in kindergarten.  Even a larger child with motor or sensory issues will often fall right off those standard chairs!

Should you use a low bench?  I am a big fan of the Baby Bjorn footstool for bench sitting in therapy, but without a back, many toddlers don’t last very long without an adult to sit with them.  Independent sitting and playing is important to develop motor and cognitive skills.   The cute little toddler armchairs that you can get with their name embroidered on the backrest look great, but kids with sensory or motor issues end up in all sorts of awkward positions in them.  Those chairs aren’t a good choice for any hypermobile child or children with spasticity.

Enter the cube chair.  It has so many great features, I thought I would list them for you:

  • Made of plastic, it is relatively lightweight and easy to clean.  While not non-slip, there is a slight texture on the surface that helps objects grip a little.  Add some dycem or another non-slip surface, and you are all set.
  • Cube chairs can be a safe choice for “clumsy” kids. Kids fall. It happens to all of them.  The design makes it very stable, so it is harder to tip over. The rounded edges are safer than the sharp wooden corners on standard activity tables.
  • It isn’t very expensive.  Easily found on special needs sites, it is affordable and durable.
  • A cube chair is also a TABLE! That’s right; turn it over, and it is a square table that doesn’t tip over easily when your toddler leans on it.
  • Get two:  now you have a chair and table set!  Or use them as a larger table or a surface for your child to cruise around to practice walking.  That texture will help them maintain their grip.  The chairs can stack for storage, but you really will be using them all the time.
  • It has two seat heights.  When your child is younger, use the lower seat with a higher back and sides for support and safety.   When your child gets taller, use the other side for a slightly higher seat with less back support.
  • The cube chair is quite stable for kids that need to hold onto armrests to get in and out of a chair.  The truly therapeutic chairs, such as the Rifton line, are the ultimate in stability, but they are very expensive, very heavy, and made of solid wood.

Who doesn’t do well with these chairs?  Children who use cube chairs have to be able to sit without assistance and actively use their hip and thigh muscles to stabilize their feet on the floor.  Kids with such significant trunk instability that they need a pelvic “seatbelt” and/or lateral supports won’t do well with this chair.  A cube chair isn’t going to give them enough postural support. If you aren’t sure if your child has these skills, ask your occupational or physical therapist.  They could save you money and time by giving you more specific seating recommendations for your child.

Your child may be too small or too large for a cube chair.  Kids who were born prematurely often remain smaller and shorter for the first years, and a child needs to be at least 28-30 inches tall (71-76 cm) to sit well in a cube chair without padding.

You may add a firm foam wedge to activate trunk muscles if they can use one and still maintain their posture in this chair, or use the Stokke-style chair A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair or the Rifton chair until your child has developed enough control to take advantage of a cube chair.

Looking for more information on positioning and play?  Check out Kids With Low Muscle Tone: The Hidden Problems With Strollers,  Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and How To Pick The Best Potty Seat For Toilet Training A Child With Low Tone.  I am in the process of writing a series of practical guides for parents of children with hypermobility, so keep checking back on my site for the launch this summer!!

The Hypermobile Hand: More Than A Strength Problem

 

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I just received another referral for a kid with “weak’ hands.  Can’t hold a pencil correctly, can’t make a dark enough mark on paper when he writes or colors.  But his mom says he has quite a grip on an object when he doesn’t want to hand something over.  He plays soccer without problems and otherwise functions well in a regular classroom.  Could it be that hypermobility is his underlying problem?

Some children display problems with fine motor skills due to low muscle tone.  Many times, their low tone is significant enough to create poor joint alignment and stability, resulting in joint hypermobility as well as low muscle tone.  But kids can also have joint laxity with typical muscle tone.  Assessing the difference between tone, strength, alignment/stability and endurance is why you get an evaluation from a skilled therapist.  And even then, it can be tricky to determine etiology with the youngest children because they cannot follow your directions or answer questions.  Time to take out your detective hat and drill down into patient history and do a very complete assessment.

With older kids, both low tone and joint laxity can lead them over time to develop joint deformity and soft tissue damage.  Like a tire that you never rotated on your car, inappropriate wear and tear can create joint, ligament, tendon, and muscular imbalance problems that result in even worse alignment, less stability and endurance, and even pain.  And yes, weakness is often observed or reported, but it often is dependent on posture and task demands, rather than being consistent or specific to a nerve distribution or muscle/muscle group.

What does the classic hypermobile hand look like?  Here are some common presentations:

  • The small joints of the fingers and thumb look “swaybacked”, as the joint capsule is unstable and the tendons of the hand exert their pull without correct ligament support.  When they slide laterally and the joint is unable to move smoothly, people say that their fingers “lock” or they are diagnosed with “trigger finger”.
  • The arches of the hand aren’t supported, so the palm looks flat at rest.  By late preschool, the arches of the hand should be evident in both active and passive states.
  • The fleshy bases of the thumb and pinky ( the thenar and hypothenar eminences, for all you therapists out there) aren’t pronounced, due to the lack of support reducing normal muscle development during daily use.
  • Grasp and pinch patterns are immature and/or atypical.  A preschooler uses a fisted grasp to scribble, a grade-school child uses two hands to hold an object that should be held by one hand and uses a “hook” grasp on a pencil.
  • Grasp and pinch may start out looking great, and deteriorate with the need for force.  Or prehension begins looking poor and improves for a while, until fatigue sets in.  This bell-curve pattern of grasp control is often seen with kids that have poor proprioceptive discrimination.  As they use their hands they receive more input, but as fatigue sets in, they cannot maintain a mature grasp and good control.
  • The typical arches of the hand that create the “cupping” of the palm when pretending to scoop water from a stream, for example, will be somewhat flattened. Unless there is nerve damage, you won’t see the “claw hand” pattern or another atypical posture.
  • Fine grasp will often be accomplished with the thumb and third finger to achieve greater stability through the MCP (knuckle) joints and to avoid full opposition of the thumb.  Another common compensatory pattern is using digits II and III together to gain greater stability.  Some kids can even wrap one digit partially around another to do this.  Now that’s hypermobility!

Don’t forget that hypermobility creates poor sensory processing feedback loops.  Reduced proprioception and kinesthesia will result in issues when children try to grade force and control movement without compensations such as visual attention and decreased speed. This can result in kids being labeled clumsy or careless.

Looking for ideas to address the difficulties children face when they have hypermobility in their hands? Take a look at For Kids With Sensory Issues and Low Tone, Add Resistance Instead of Hand-Over-Hand Assistance and Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility?.  Depending on the age and skill level of the child, adaptations and education can be just as important as therapeutic exercise.  Your pediatric occupational therapist can help with more than pencil grasp; we are able to help with so many real-life issues!

Need help with toilet training?  My e-book will give you the support to make this less of a struggle!  Read The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived! and find out what parents have to say about the only manual on the market to address potty training and low tone.

Would you like more ideas about managing your child’s hypermobility?  Visit my website,  tranquil babies , and purchase a consultation session.  You can ask questions, get equipment sources and find out about treatment techniques that you can pursue with your team at home.  This is your chance to learn more about what low tone is, how it may be affecting your child’s progress, and have someone help you problem-solve for your child (or yourself)!

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When Should You Begin To Teach Handwriting? (You May be Surprised!)

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The ability to bring two hands to midline and use fingertips to hold a block is a pre-writing skill!

Many formal handwriting programs begin at 4 years of age.  Handwriting Without Tears, Fundations, and others begin with children tracing letters and quickly progress to writing.  But the foundational skills for handwriting actually begin early.  Before your child’s first birthday.  Yes, that early.  And, believe it or not, that is when you could be teaching important skills that will eventually morph into handwriting.

No, I am not suggesting that we start teaching infants to write!  I have met a handful of very gifted children, some of whom could read before 4, but not one was writing letters before their first birthday.  The foundational skills for handwriting are grasp, reach, bilateral control, posture, ocular (eye) control and visual perception.  And every single one of these skills is developing before a child turns 1.

How do you develop these skills?  Play.  Play with small toys, play with big ones.  Play that requires a child to move.  Crawling through a tunnel and climbing over cushions to develop arm and hand control.  Play on their stomach and play standing at a table for posture and core stability.  Play that requires more than tapping a screen or pressing a button.  I love my tablet as much as the next person, but I was fortunate to grow up before it was invented.  I had something called “toys”.

If you sent me to teach occupational therapists in a developing country, I would bring a small bag of the best toys I know:  crayons, paper, scissors, LEGOs, balls of all sizes, and I would use some things that every home is likely to have:  small cups for scooping and emptying, scarves for peek-a-boo, and little pieces of food for self-feeding.  This is all you need.  Really.  Giving a child the chance to feed themselves, play in water and sand, build and scribble can do a lot to build foundational skills.

One thing that I forgot to mention as a foundational skill is……interest. Some kids are very interested in coloring.  Many are not.  Same with reading.  How do you get your child interested in writing?  You allow them access to tools, make the tools desirable, and show them that you enjoy coloring or writing.  When your infant reaches for your pen and you slide it away from them, they are showing you interest.  They can’t use a pen, but they can mess around with food puree on their high chair tray, drawing lines in the goo.  Prewriting at work.  When your toddler wants to eat the marker, remind them that these are for scribbling, and help them to make a masterpiece.  Every day.  Find fun materials.  I am a big fan of crayons instead of markers, but there are some sparkly crayons and some great markers and papers that don’t destroy your home while your child is learning to draw and write Color Wonder Paper Will Boost Creativity and Save Your Walls.

Not an artist?  No problem!  Fake it.  Just like you gleefully eat veggies even though you’d rather have cake, scribble and make something silly on paper.  Show how much fun it is.  You might find out that you are more creative than you thought, or that once you kill that critic in your head, you actually like to draw.

Child development experts bemoan the limited language skills of kids from families without books.  Philanthropists like Dolly Parton donate tons of books to poor families in the hopes that children will be read to and develop a love of reading.  Guess what?  Children need to have early experiences with writing and drawing as well.  The family that has no crayons, no markers, no paper and no interest in drawing or writing will not inspire their children.

Give the gift of “pre” prewriting to your child, and give them a head start today!

Looking for more information on handwriting and development?  Read Have More Fun When You Use Drawing To Develop Pre-Writing Skills and Why Dot-To-Dot Letter Practice Slows Down Writing Speed and Legibility.

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