Category Archives: hypermobility

Does Your Special Needs Child Have a “Two-tude”? Its Not Just the Age; its the Circumstances

 

patrick-fore-557736I spend a lot of my work week with toddlers, and they can be a challenge.  One minute sunny, the next screaming because their cookie broke.  Special needs toddlers can have a “tude as well, but many professionals sweep it under the rug.  They tell parents that this is normal, and that they should be grateful that their child is going through a completely normal stage of development.

Except that many parents who have already raised typically-developing kids KNOW that there is a difference with this child.  It could be the intensity of the ‘tude, or the frequency of the meltdowns, or the types of events that trigger the tantrums.  OR ALL OF THEM!  Parents know that this doesn’t feel the same, but they often shut up when they are told that it is so normal.  Perhaps their eyes and ears and memory isn’t correct.

They aren’t wrong.  Their perception that something is a bit different can be totally correct.  And the reason(s) are quite obvious to me.

Special needs kids come in an almost endless combination of needs.  Some are physical, some are communication needs, and some are cognitive or social skill needs.  Some are all of these.  Having challenges in moving, speaking, comprehending language and/or concepts or struggling to interact will create more frustration for every single day of a child’s life.  That’s the reality of disability.

The image of the placid and sweet special needs child, patiently waiting to be assisted and supported is just that: an image.  Most kids bump into frustrating barriers every day.  The toddler that has just learned to walk but can’t run, the toddler that is talking or signing but still isn’t understood by their older brother, the toddler that cannot handle a change in routines…it goes on and on.

Typical toddlers spend less time frustrated that they are unable to accomplish simple skills.  The typical 14 month-old that can’t tell you what he wants becomes the 18-month old that can say “cakker, pease” for “cracker please”.  A special needs child could be 4 years old and still struggling to explain that he wants another cracker.  That is a long time to be frustrated.  The typical 26 month-old that can’t run after their brother in the backyard becomes a runner at 30 months.  A special needs child may not run for years.  That is a long time to be left in the dust when everyone is running.  Is there any wonder that parents see more frustration, more tears, more stubbornness?

My saddest story of failed inclusion is when a family placed their special needs child in a toddler development group with mobile kids.  Even though this child had a personal aide, he still watched as his peers got up from the snack table and ran outside.  They left him with the aide, who then carried him outside so he could WATCH his peers climb and run.  He became distraught at home when he was left alone in a room.  A puddle of tears.  It was so sad to see.  No one had thought of the emotional cost of inclusion to this toddler, only the social and academic benefits.

What can be done?

I teach families the Happiest Toddler on the Block strategies as soon as they are appropriate.  Dr. Karp’s techniques build a child’s skills while enhancing interpersonal connections.  Yes, sometimes you have to provide consequences for aggression, but mostly it is about building frustration tolerance and emotional intelligence.  For everyone.  I use these techniques all day long.  I could never handle so many toddlers for so many years without them!

Looking for more information on special needs toddlers?  Read Need to Support A Child’s Independence? Offer to Help Them! and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.

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When Writing Hurts: The Hypermobile Hand

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Many children resist doing their homework, but most kids say “Its so BORING!” not “My hand hurts too much”.  If a child is complaining of pain, and they don’t have a joint disease such as JRA, the first thought is hypermobility.  The good news is that there are a few fast fixes that can decrease or even eliminate hand pain.

It is rare that hypermobility in the hand is directly addressed at the preschool level unless it is generalized throughout the body or severely reduces pencil grasp.  Many children have atypical grasp patterns when they cannot achieve the required stability for a standard pencil grasp.  Children with mild instability and no other developmental issues may still be able to write legibly and even fast enough to complete assignments in the early grades.  It is when the volume of work increases or the joint stability decreases that therapists get a request for service.

Here are a few strategies that can support hypermobile kids to write with less pain:

  1. Use a tabletop easel.  These can be foldable or static.  They support not just the wrist and forearm, but also the shoulder and trunk.  The angle of an easel both supports correct wrist positioning and decreases strain on the wrist and hand.  Some easels come with clips that hold the paper, but they should be placed on an angle to mirror the natural arm position.  This will require more table space, so be aware that the size of the easel could be an issue.  Simple hack:  use a three-ring binder as an easel.
  2. Enlarge the width of the pencil shaft.  My favorite pencils for grades 1+ (see photo above) have a standard #2 lead, but a wider shaft. Joint protection principles tell us that avoiding a closed joint position should lead to less strain on joints and supporting ligament structures.  You could use some of the adaptive pens available, but I find kids reject these as looking strange.  Of course, if you enlarge the shaft oo much you will find that it is more awkward, not less.  Think of those novelty pencils you buy in gift stores on vacation.  Cute but useless.  Nobody really writes with anything that thick.  Match the child’s hand size to the pencil.
  3. Increase the texture of the pencil shaft for easier grip, less pain, and more endurance.   Everyone has seen the rubbery grips you slip onto a pencil.  You can slide 3-4 onto the entire shaft, or add some tape to create a non-slip surface.  I have been adding kineseotape or Dycem to handles this year, with good results.  You are battling grasp stability, but also fatigue.  A hand that is tired is a hand that experiences more pain.  Adding texture reduces the amount of force needed for proprioceptive registration (a fancy way of saying that kids need to squeeze to fully feel what is in their hand).  Reducing force reduces pain and fatigue.
  4. Teach pacing.  Kids think that the faster they write, the faster they will be out of pain.  Breaking up the work can have better results, but it isn’t natural for children to pace themselves.  In fact, I have never seen a young child do so.  You have to teach this to kids who likely will have joint instability throughout their school years.  A schedule, a timer, organizing assignments and breaking them down into heavy writing choices and light writing choices all help.
  5. Splinting can be a real option.  Not a heavy plastic or metal splint (usually).  A neoprene splint can be a lightweight supportive choice.  These splints are comfortable and washable.  These are affordable without insurance for most families, and your OT can help you decide if this is a worthwhile pursuit.  They are durable but easily lost by younger children, so not all families send one to school.  But the support is real, and kids that have been told for years to “fix your fingers” can feel relieved that they can now focus on writing and composing on the paper.

For more information on hypermobility, read The Hypermobile Hand: More Than A Strength Problem and For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

Looking for more assistance with hypermobility?  My new e-book is coming out this summer, and it will address the issues of the early years (0-5).  The series will continue with school age kids and teens.  But you don’t have to wait; visit my website tranquil babies and request a consultation to discuss your child’s treatment plan and make a better plan that works for everyone…today!

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.  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.
  • 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.

For more information and ideas about helping your child with hypermobility, read Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and Should Your Hypermobile Child Play Sports?

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Does Your Child Still Chew on Clothes or Toys?

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Babies love to munch on their toys.  They nibble at book bindings, chew the heck out of their loveys, and some little ones really love to chew their pacifiers.  As they grow, most children let go of this behavior.  Chewing and biting for sensory exploration and state modulation diminishes and a child’s behavior evolves into thinking, communicating, and smooth internal state regulation.

But some older kids slip their sleeve or shirt collar into their mouth whenever they can, and are left with a soggy mess by the end of the day.  They suck on their markers or the grocery store cart.  Their toys and pencils are ragged witnesses to the continuing use of oral stimulation, long past the first year or two of life.

Why do they do this?

Some kids are seeking to fill an oral cavity that is less stimulated due to low muscle tone, hypermobility and/or limited sensory discrimination.  Shoving a sleeve in there provides that sensory boost as muscles, skin and ligaments stretch.  Children that need more sensory input due to inactivity, boredom, physical limitations and illness use oral input as an always-available and independent option.  Other kids use biting and chewing to modulate their level of arousal (and open their eustachian tubes, BTW!).  While most OTs know about the modulation piece, the way biting and chewing impact hearing and even vestibular health isn’t so commonly considered.  Biting can stem nystagmus for some kids, and it can lessen dizziness or help a child move their eyes apart as they watch objects in the distance (divergence) for reading the board and for sports.  For kids that use biting well after the toddler biting phase should be over, evaluating any ocular (eye) or ENT issues can be helpful.

Exploring the level of stress in a child’s life outside the classroom or therapy clinic is another consideration.  Biting and chewing are calming proprioceptive inputs that a child can use when they are anxious or fearful, or just uncertain.  It may not be possible to impact the stress of divorce, moving to a new home, or adding a newborn to the family, but appreciating these situations as factors in behavior can improve how families, teachers and therapists respond.  Older children could be trying to modulate their level of arousal without causing trouble by running, jumping or yelling.  Chewing is less likely to be disruptive in a classroom setting.

What Can You Do Once a Chewing Habit is Established?

Once oral sensory seeking behavior takes hold, it isn’t easy to stop.  It can be very satisfying and accessible, particularly for young children.  Addressing the core cause or causes means taking things one step at a time.  Many children do well with a multi-sensory diet added to their daily activities.  More physical activity or more frequent activity breaks can help.  I find that more vestibular input in particular can be powerful.  Using whistles can be helpful when chosen well and supervised for safety and overall modulation.   Some children need to become more aware of their behaviors; older kids can use some of the “How Does Your Engine Run?” concepts to take responsibility for their behaviors and independently seek alternative sensory input.  Kids that learn mindfulness techniques can incorporate those into their program as well.

The use of chewing objects can help, but there are three concerns that have to be addressed:  hygiene, safety, and speech.  A child that sucks or chews on any object isn’t going to monitor its cleanliness, so make sure you use non-toxic soap that is carefully rinsed off.  A chewing necklace should never be worn while sleeping due to safety issues, nor can it be used when it could become snagged on branches or sports equipment.  And finally, having something in the mouth, whether it is a pacifier or a chewing toy, will minimize and alter speech if it isn’t removed for communication.  Never allow a child who is talking or learning to talk to devolve into head nods so they can keep chewing.

Looking for more information on sensory issues?  Read Sensory Sensitivity In Toddlers: Why Responding Differently to “Yucky!” Will Help Your Child and Weaning the Pacifier From An Older Child.

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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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The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem

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Many different ways to use Dycem!

In adult rehab, occupational therapists are regularly providing patients who have incoordination, muscle weakness or joint instability with both skill-building activities and adaptive equipment such as Dycem.  In pediatrics, you see a predominance of skills training.  Adaptive equipment shows up primarily for the most globally and pervasively disabled children.  I think that should change. Why?  Because frustration is an impediment to learning, and adaptive equipment can be like training wheels; you can take them off as skills develop.  When kids aren’t constantly frustrated, they are excited to try harder and feel supported by adults, not aggravated.

 

What Dycem Can Do For Your Child

Dycem isn’t a new product, but you hardly ever see it suggested to kids with mild to moderate motor incoordination, low tone, sensory processing disorders, hypermobility, and dyspraxia.  We let these kids struggle as their cereal bowl spills and their crayons roll away from them.  Dycem matting is a great tool for these kids.  It is grippy on both sides, but it is easy to clean.  Place a terrific bowl or plate on it OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues, and it won’t tip over with gentle pressure, and not even if the surface has a slight incline.  It lasts a long time, and can be cut into any shape needed for a booster seat tray or under the base of a toy like a dollhouse or a toy garage.  Placing a piece of Dycem under your child while they are sitting on a tripp trap chair or a cube chair A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato ChairThe Cube Chair: Your Special Needs Toddler’s New Favorite Seat! will help them keep their pelvis stable while they eat and play.  The bright color contrasts with most objects, supporting kids with visual deficits and poor visual perceptual skills.  It catches their eye and their attention.  As you can see, Dycem has a lot to offer children and parents.

How To Use Dycem To Build Motor Skills

Will it prevent all spills or falls?  No.  But it will decrease the constant failures that cause children to give up and request your help, or cause them to refuse to continue trying.  Children are creating their self-image earlier than you realize, so helping them see themselves as competent is essential.  Will it teach kids not to use their non-dominant hand to stabilize objects?  Not if an adult uses it correctly.  Introducing Dycem at the appropriate stage in motor development and varying when and where it is used is the key.  Children need lots of different types of situations in order to develop bilateral control, and as long as they are given a wide variety of opportunities, offering them adaptive equipment during key activities isn’t going to slow them down.  It will show them that we are supporting them on their journey.  When kids are new to an activity or a skill and need repeated successes to keep trying, Dycem can help them persevere.  When children are moving to the next level of skill and see that they are struggling more, Dycem can support them until they master this new level.

The Cheap Hack:  Silicone Mats

I will often recommend the use of silicone baking mats instead of dycem.  These inexpensive mats often do the job at a lower cost, and can be easily replaced if lost at daycare or school.  Dycem is a specialty item that can be purchased online but not in most stores.  Silicone mats aren’t as grippy, but they are easily washed and dried.  Some families are averse to anything that looks like adaptive equipment, so I may introduce these mats first to build a parent’s confidence in my recommendations.

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Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue?

 

vincent-van-zalinge-752646-unsplashTherapists see lots of hypermobile kids in clinics and schools.  I see hypermobile children  every week in their homes for private sessions, consultations and ongoing treatment through Early Intervention.  My estimate is that at least 25% of kids over 5 and almost 50% of the younger kids I have treated have some degree of hypermobility.  But young children are naturally more flexible than older kids, and there are other diagnoses that include hypermobility.  What would cause  a therapist to suspect a rare CTD when so many children have this one symptom?

You observe the systemic signs and symptoms that could indicate an HDCT, and you ask their parent(s) for details about their health and activities.  You will need far more information than you can get from your intake evaluation to explore the possibility of a heritable disorder of connective tissue.

Here are a few of the more common current or past indicators of a HDCT:

  • Multiple joint involvement.  Not just lax hands, but laxity at many joints, both small and large at times.
  • Skin that is either very smooth, very thin, or bruises easily, and bruises in places that are not common sites for active children.  For example, shins and dorsal forearms are commonly bruised in play.  The medial aspect of the thigh and the volar forearm, not so much.  It is not uncommon for ER staff to incorrectly suspect abuse when they see this pattern, so be aware that as a mandated reporter, you have to ask more questions before you make that call.
  • Sensory processing issues that are primarily poor proprioception, sensory seeking and perhaps poor vestibular functioning.  Children with a HDCT may have no sensory sensitivity and no modulation issues, and good multi-sensory processing.  Why good?  The more information they receive, the less the impact of poor proprioceptive input makes on performance.  With good positioning and support, their sensory issues seem to significantly disappear or are eliminated Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.
  • Lower GI issues or incontinence issues.  These kids may have more toilet training problems and more issues with digestion than your micro-preemies at ages 4 or 5.  Girls may have a history of UTIs, and both genders can take a long time to be continent all night Teach Kids With EDS Or Low Tone: Don’t Hold It In! You may hear about slow GI motility or a lot of sensitivity to foods that are not common allergens in children.
  • Dental issues such as bleeding gums or weak enamel.  Remember, if it is a CTD, then there will be problems with many kinds of tissue, not just skin or tendons.  Read Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health for more practical ideas.
  • Strabismus or amblyopia are more commonly seen in HDCT.
  • Really slow progress in therapy, even with great carryover and a solid team.
  • Recurrent injuries from low-impact activities that were well-tolerated the day before.   Micro-trauma can take a day to develop into pain, swelling or stiffness.  You  could see overuse trauma that doesn’t make sense at first, because the overuse is just regular levels of activity but for a CTD, this IS overuse.

Should you say something to a parent?  I don’t have a license to diagnose children, but I may contact their referring physician if I see many indications that a child needs more evaluation.  More directly, I can help parents manage the issues that fall within my practice area, and educate families about good joint protection, equipment choices, and body mechanics.

 If a child does have a HDCT diagnosis,  the current and future risks of certain sports and careers should be discussed with families.  As therapists, we know that early damage can contribute to significant impairment in decades to follow.  Just because a child isn’t experiencing severe pain now isn’t an indication of the safety of an activity.  Understanding the many ways to adapt and adjust to ensure maximal function and maximal preservation of function is embedded in every OT.  Adapt your treatment protocols to respect the nature of a CTD, such as in  Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?

We can make a difference for these kids and their families, but only if we know what we are really treating.

Are you a therapist looking for clinical guidance?  Visit my website tranquil babies and connect with me through a phone or video session.  With over 25 years of pediatric experience, I have probably tried all of the techniques you are considering, and treated children with the diagnoses that keep you guessing.  Make your treatment sessions more productive, and your treatment day easier, with some professional coaching today!

Are you a parent of a child with a CTD?  Or an adult with a CTD?  A coaching phone/video session may answer your questions about diagnosis and treatment, and help you craft a more successful home program.  This is not the same as a treatment session, but especially if you are getting private therapy services, you want to be an informed consumer and get everything you can from your providers.  Coaching can help you be that effective parent or patient.  Visit my website tranquil babies and get started today!

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