Category Archives: low tone

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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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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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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I don’t have a good photo to illustrate this point, but if you or your child are hypermobile, you know exactly what I am talking about.  It can be 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, and have almost eliminated, this behavior.  This child is now using it to get attention when she is frustrated, not to explore movement or propel herself around the room.

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. 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 .  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!!joshua-coleman-655076-unsplash

Is Your Constipated Toddler Also Having Bladder Accidents? Here Are Three Possible Reasons Why

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Kids with chronic constipation are a challenge to train.  It can often appear that withholding is the issue, and to be certain, fear and pain are real issues.  But there are some physiological problems caused by constipation that contribute to bladder problems, and they aren’t always what your pediatrician is thinking about.

  1. The constant fullness of the colon can lead to bladder misplacement.  The bladder can be compressed and even folded, depending on exactly where the blockages exist.  This is not good for any organ, but it is especially a problem for a hollow organ that should be filling and emptying regularly.   The sensation of fullness with a misplaced bladder is therefore corrupted, so the child is not receiving correct input.  They may feel that they “have to go”, only to have nothing in their bladder, or very little.  They may fill up really fast and have to run to the toilet before they have an accident.  Too many accidents, and a child can beg for that pull-up so that they aren’t embarrassed or inconvenienced.  Even the little ones are subject to shame that isn’t from you as a parent, but in comparison to older kids or sibling comments.
  2. Chronic constipation stretches the pelvic floor, and therefore there is both less stability and less control.  The pelvic floor muscles help us to hold the urine into the bladder in time to get to the toilet, in conjunction with the sphincters.  Poor control and poor awareness go hand-in-hand.  There are physical therapists that specialize in pelvic floor rehab, but this isn’t easy to do with children that have limited language.  Not impossible, but not easy.  Letting the problem go until they are older means risking years of psychological and physical stress.
  3. Withholding due to pain or fear is a huge issue, and it can become automatic.  This means that solving the constipation issue may not immediately result in continence.  Using a wide range of approaches, including manual therapy, behavioral strategies, medications and diet control, and even core stability and sensory processing strategies, may be needed.

My final comment is that chronic constipation is nothing to ignore.  It needs to be addressed well and early.  It often doesn’t solve itself, and it may need more than a spoonful of Metamucil to clear up.  Get help and request consultations early rather than waiting to see how things “go”!

For more information about toilet training, see For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up and The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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