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
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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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Is Your Kid With ADHD Also Gifted, or is Your Team Missing Their Giftedness?

david-clode-635942-unsplashAre you hearing that your child is a management problem at school, but is a joy at home?  Do you see them thrive when your older child’s friends include them in play?  Does your child sustain their attention and manage their behavior well when the class goes on field trips or has speakers come in, but dissolves into troubling behavior on a “regular” school schedule?  Your child may have a dual diagnosis of giftedness and ADHD, or have been misdiagnosed completely.

I know, I am not a psychologist.  But I am aware of the many kids I have treated that blossom when, instead of simplifying the environment or the activity, I expand it.  This goes against the standard treatment protocols for kids with sensory processing disorders and ADHD.  But it is exactly what gifted kids love and need.  Give a gifted kid more complex work, leave them alone to solve a challenging problem, or ask them to mine their passion more completely, and you often see better performance, not worse performance.  The kids with ADHD without giftedness often struggle more and need more help under a more complex environment.  The misdiagnosed gifted kids shine like little pennies when challenged.  Gifted kids will show ADHD behaviors in situations that restrict or frustrate their tendencies to dive deep into a subject (intensity ) and look terrific in a setting where they are stimulated and engaged.  Kids with ADHD might be happier out of school, but they struggle with the same issues of distractibility, disorganization and they show a lack of focus, not a deep absorption.

As an aside, many of the kids I treat that look like they have Asperger’s (or now high-functioning autism) are gifted, and their delays in speech or motor skills mask their gifted performance when they are between 1 and 5 years of age.  What gives them away as gifted instead of disordered?  They light up when someone wants to talk about their deep interests, and they would seek that interaction out.  Their interests may seem quirky, but they aren’t incredibly obtuse.  For example, a gifted child could be interested in ocean life, with a strong interest in squids.  If you like squids, they will talk your ear off and enjoy it tremendously if you do.  A child with Asperger’s will be interested in something so unique that they couldn’t find someone to share it with, like threshing machines, and they couldn’t care less if you share their interest.  They won’t want to convince you of the many useful things they do, they won’t want to discuss it.  Will they want to talk?  Sure, but talking to you isn’t the same as discussing it.  They may find your input annoying, in fact.

Grades, and even cognitive testing, sometimes aren’t enough to identify gifted kids.  Some of them aren’t going to try very hard.   Some will mess with the evaluator’s mind.  I have heard at least one parent report that their child deliberately gave the wrong answers to see what would happen.  This child is reading chapter books at 3.5 years old.  He really doesn’t understand that getting a low intelligence score is going to send him to special ed instead of advancing him to a higher grade or an enriched program.  Emotional maturity is one of the skills that are often not advanced in gifted kids.  To paraphrase Jack Nicholson’s character in the movie “A Few Good Men“, these kids want the truth (or the facts, or the experiences) but sometimes they can’t handle them.  Young gifted kids can fall apart when their imagination doesn’t match their execution.  Whether it is writing, building, drawing or another skill, they can display anxiety and anger when things don’t match their amazing thoughts.  This isn’t oppositional defiant disorder or an anxiety disorder, it is an asynchronous development problem.

I can’t ignore the strong bias against giftedness in our culture.  Sure, there are cultures that applaud accomplishments, especially intellectual accomplishment, but not when it is accompanied by impatience, a tendency to dominate the conversation, perfectionism and frustration with others and themselves.  Gifted people of all ages become aware that it could be easier to speak about being on the left side of the Bell curve than on the right side.  Whether you share your suspicions or your testing results is up to you, but know that you may get pushback from some unlikely sources, especially at school.

If your child is gifted, seek out support wherever you can find it, and learn how to discuss your child’s gifts with them.  There are online sites like SENG that can offer you some strategies and some resources.  You may want or need outside help to learn how to harness their overexcitabilities OT and Non-Disabled Gifted Children and handle their feelings, but a child that understands their gifts will not consider themselves impaired and will learn to accept their atypical nature with confidence.

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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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Construction Site on Christmas Night: A New Classic Is Born!

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Anyone that knows the board book Goodnight, Goodnight, Construction Site should run right out and get this one for next week.  OK, maybe you won’t be able to wait that long.   Read it when you get it home!  An absolutely read it before your young child goes to bed on Christmas Eve!  Santa will wait a little longer for his cookies and milk.

The graphics are just detailed enough, but not so complex that most 2 year-olds can’t figure out what is going on.  There is some repetition so they can keep up with the story, but older kids can follow the concepts of kindness and caring in relationships.  The rhyming text is terrific for kids learning phonics.   Rhyming has been working out well for audiences of all ages, even before Shakespeare’s iambic pentameter.  Works for me, too!  This is a fun book for parents to read out loud, which is good because you will be reading it over and over, night after night, long after the decorations are packed away.

The construction vehicles in the story end up building a new fire house for the fire engines, but they get some treats for themselves as well.  It is a happy story with a lot of warmth and a wonderful chance to talk about how good it feels to give.

Enjoy this fun little book during the holiday season!

A Great Toilet Training Book for Neurotypical Kids: Oh Crap Potty Training!

sean-wells-471209My readers know that I wrote an e-book on potty training kids with low tone ( The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived! ) but I have to admit, I learn a lot from other authors.  Jamie Glowacki  has written a terrific book that speaks clearly and directly to parents who aren’t sure they are up to the challenge of toilet training.  Oh Crap Potty Training is a funny title, but it is filled with useful ideas that help parents understand their toddler better and understand training needs so they can tackle this major life skill with humor and love.  I have to admit, I am really happy that she suggests parents of kids with developmental issues ask their OT for advice.  So few parents actually do!

Here are a few of her concepts that illustrate why I like her book so much:

  1. She gets the situation toddlers find themselves in:  using the potty is a total change in a comforting daily routine.  Jamie points out that since birth, your child has only known elimination into a diaper.  The older they are when you start training, the longer they have been using diapers.  WE are excited to move them on, but they can be afraid to sit, afraid to fail, and afraid of the certainty of the diaper always being there.  You can’t NOT get it in the diaper!  She also gets the power struggle that can be more enticing to an emerging personality after about 30 months of age.  Just saying, she gets it.
  2. Potty training success opens meaningful doors for kids, diapers keep them back.  Some great activities and some wonderful schools demand continence to attend.  By the time your child is around 3, they can feel inferior if they aren’t trained, but not be able to tell you.  They express it with anxiety or anger.  If you interpret it as not being ready, you aren’t helping them.
  3. Some kids will NEVER be ready on their own.  I know I am going to get some pushback on this one, and she already says she gets hate mail for saying it.  But there is a small subset of kids who will need your firm and loving direction to get started.   Waiting for readiness isn’t who they are.  If you are the parent of one of these kids, you know she’s right.  Your kid hasn’t been ready for any transition or change.  You have had to help them and then they were fine.  But this is who they are, and instead of waiting until the school makes you train her or your in-laws say something critical to your child, it might be OK to make things happen rather than waiting.
  4. You must believe that you are doing the right thing by training your child.  They can smell your uncertainty, and it will sink your ship.  She really sold me on her book with this one.  As a pediatric therapist, I know that my confidence is key when instructing parents in treatment techniques for a home program.  If I don’t know that I am recommending the right strategy, I know my doubt will show and nothing will go right.

If you are looking for some ideas on training kids of all stripes and needs, check out my posts  For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up and Toilet Training For Preschool And Stuck in Neutral? Here’s Why…...  Of course, if your child has low muscle tone or hypermobility, my e-book will help you understand why things seem so much harder, and what you can do to make potty training a success!

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