Category Archives: hypermobility

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!

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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, 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 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.  The bright color contrasts with most objects, supporting kids with visual deficits and poor visual perceptual skills.  It catches their eye and their attention.

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.

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.

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 looking at.

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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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Teens With Chronic Illness Or Disability Need A Good Guide: Read “Easy For You To Say”

bagas-vg-426755Being a tween or teen isn’t easy, but having a chronic physical illness or disability (not interchangeable) can make it extremely difficult.  Kids aren’t always great at asking for help or even answering questions, so this wonderfully useful book has done the groundwork for you.

Dr. Miriam Kaufman’s book Easy For You To Say is an easy-to read format of questions and answers that is accessible for teens to read and parents of teens will learn a tremendous amount as well.  She has a significant amount of experience with this subject, and has plenty of solid medical knowledge to back up her information.

As a physician, you will find that she includes a great deal of medical information, including medication lists related to teen concerns such as acne and sexual response and functioning.  These lists, of course, are dated the minute the book is published, but the general categories of drugs that have effects that concern teens is helpful as a starting point for discussions with a pediatrician or specialist.

This book isn’t just about the medical concerns that occur with physical illness and disability.  Dr. Kaufman covers the challenges of relationships of all kinds, and practical issues with school, work, and having fun as a teenager while dealing with significant issues.  This book doesn’t mince words but is unfailingly positive.  Kids (and parents of teens) really need that positivity while trying to launch into a life of more independence.  She is a strong proponent of self-advocacy that doesn’t become militant but is always life-affirming.  There is some discussion of higher education and career planning, which is so essential Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues.

This book has it’s limitations.  It doesn’t address cognitive disabilities or psychiatric disabilities like living with bipolar illnesses, nor does it speak about ASD or SPD.  These issues can co-occur in the same teen, and it is then that you might want to think about what an OT has to offer.  This author doesn’t even mention us as helpful professionals that do more than, if you can believe it, help kids look at career options.  Perhaps she missed the class on what “occupation” really references.  Oh well.

As an occupational therapist, I wish my profession had been mentioned as a greater resource for disabled teens, but perhaps I should not be that surprised that it is left out.  Most physicians aren’t aware of how OTs can meaningfully assist kids past the Early Intervention years to enhance their functioning and learn both better skills and work-arounds to accomplish what they would like to do in life.  For example, her book speaks in great detail about the complications of mobility and coordination limitations during sexual activity.  Since just about every teen is curious about this subject, an occupational therapist could help them adapt their environment, equipment and movements to make this part of ADLs a success on many fronts.  Dr. Kaufman has a lot of ideas, but the specifics for each teen are going to be different, and that is where OTs shine.

This book should be on the shelf of most pediatric physiatrists, and most OTs.  It is now on mine!  If your child is no longer a child, I recommend “Life Disrupted” by Laurie Edwards.  This book covers the situations that young adults in their 20’s really need to figure out.  Specifically, learning how to craft a career, develop relationships and become independent when you are dealing with a chronic illness.  None of it is easy, but the author is both supportive and realistic.  I think that helps more than platitudes and positivity without, as Dr. Phil might say, putting verbs in the sentences.

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The Best Ride-On Toy For Younger (or Petite) Toddlers

 

61-g+QMVAYL._SL1000_.jpgAs an occupational therapist, I have always found it difficult to recommend a toddler ride-on toy for younger or smaller kids with low muscle tone and hypermobility.  Most of these toys have such a wide seat that children must propel themselves with their knees rotated out and pushing forward on their toes.  Exactly the pattern of movement we DON’T want to see.

And then I saw the Fly Bike.  This little fold-up bike has a seat that is about 9.5 inches high and has a very narrow seat.  This allows a child’s feet to be aligned with their hips, facilitating the development of hip and trunk control, not substituting bending forward and back to propel the toy.

The textured seat helps grip a child’s clothing for a little extra stability, and the small handlebars mean children aren’t draping their chest over the front of the toy; they are holding onto the handlebars with their hands.  Brilliant.  The rubber wheels are kind to indoor floors, but can handle pavement easily.

Are there children that don’t fit this toy?  Absolutely.  If your child is too tall for this toy, they shouldn’t use it.  If your child cannot maintain adequate sitting balance independently on this toy, they may need more support from another style of ride-on toy, perhaps with a larger seat and a backplate.

I finally have a great ride-on toy that I can recommend for smaller kids.  An early Xmas present to me and my little clients!

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