Tag Archives: occupational therapy

The Subtle Ways Long Term Medical Care Affects Infant and Toddler Development

 

hannah-tasker-333889-unsplashThe good news:  more and more extremely premature and medically complex babies are surviving.  The bad news: there is a cost to the extended and complex treatment that saves their lives and helps them to thrive.  This post is an effort to put out in the open what pediatric therapists know only too well goes on after the medical crisis (or crises) are over.   Only when you know what you are seeing can you change it.

This is not an exhaustive list; it is a list of the major complications of a complex medical course of treatment on behavior:

  1. Your child is likely aware that their coughing, crying, or other reactions will stop parents and even some medical professionals in their tracks.  I have had kids who didn’t get what they wanted learn to hold their breath until they turned blue.  If you have worked in medicine, you should know that if a child does this and faints, they will immediately begin breathing again.  It doesn’t scare me.  But it can terrify family members, teachers, and other caregivers.  They will stop whatever they were doing and may give in to any demand right away.  Many kids learn who will take the bait impressively fast.  It is very damaging to a child’s relationships and destroys their ability to handle frustration.
  2. Invasive treatments have been done while distracting your child and often without involving your child in any way.  This has taught your child not to attend to an adult’s actions or words in the same way a typically developing child will do naturally.  Since learning language and fine motor skills are highly dependent on observation, these skills are directly impacted by this consequence.  This pattern can be reversed, but it is highly resistant and has to be addressed directly.  Don’t think it will simply go away as your child recovers medically.  It doesn’t.  As soon as your child can be involved in self-care any way (holding a diaper, etc) you need to engage your chid and demonstrate the expectation that they respond and interact to the degree that they can manage.  All the time.
  3. Typical toddler attitudes are ignored because “He has been through so much already”  If your child is kicking you while you change his diaper ( a real question to me by a private duty nurse) then you react the same way you would if your child didn’t have a G-tube or a tracheostomy.  The answer is “NO; we don’t kick in this house”.  You don’t get into why, or what is bothering them right away.  The immediate answer is “no kicking”.  Not now, not ever.  Aggression isn’t unusual or abnormal, but it has to be addressed.  With understanding and as little anger as you can manage as your beloved child is aiming for your face with his foot.  The parents may be experiencing their own PTSD Can Your Pediatric Patient’s Parents Have PTSD? so be aware that their reactions may be coming from a place of untreated trauma as well.
  4. Children who are unable to speak to engage you or able to move around their home will come up with other methods to gain and hold your attention.  Some children throw things they don’t want and HOPE that you make it into a big deal.  Or they throw to gain attention when they should be using eye contact, vocalization or signing.  They wanted your attention, and they got it.  Without speaking, signing or any other appropriate method of communication.  This is not play, this is not healthy interaction.  This is atypical past 10-12 months, and should be dealt with by ignoring or removing the items, and teaching “all done” or “no” in whatever method the child can use.  And then teaching the correct methods of gaining attention and rewarding it immediately.  The biggest roadblock is that if one caregiver takes the “throwing” bait, the child will dig in and keep using that method.  Adults have to act as team managers, and if they fail, the behavior keeps on going.
  5. Children can request being carried when they don’t need the assistance, but they want the attention.  This can delay their advancement of mobility skills.  One of my clients has learned which adults will hold his hand even though he can walk unaided.  He likes the attention.  The clinic PT doesn’t know this is happening, even though the family brings him to therapy.  Like a game of telephone, each caregiver assumes that the child needs the help he is requesting.  He is not developing confidence in his own home, which should be the first place to feel safe and independent.  He depends on adults to feel safe.  Oops.

 

In many ways, my job as an OTR is to alter some of these behaviors to allow normal development to take place.  Long after those medical crises are terrible memories, the consequences of those days, weeks, months and sometimes years can have significant effects on learning and independence.

Looking for more ideas to help children grow and develop?  Read Need to Support A Child’s Independence? Offer to Help Them! and The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem.  Do you have issues with your child’s siblings?  Read Are Your Other Children Resentful of Your Special Needs Child?

michael-mims-134037-unsplash

Why Is The Wilbarger Protocol So Hard To Get Right?

 

michael-mims-134037-unsplashThe Wilbarger Protocol has been a staple of therapeutic treatment of sensory processing disorder for decades.  I will reveal my age, and admit that I learned directly from Pat Wilbarger.  She was an amazing teacher and a highly skilled clinician to see in action.  But I have lost count of the number of times parents have shown me how they have been instructed to administer deep pressure brushing and joint compression, and I had to decide exactly how to respond in a professional manner.  My initial internal reaction is often something akin to “STOP!”

So many parents have been incorrectly taught.  They are wondering why this technique hasn’t worked very well for their child.  Internet-savvy parents have consulted “Dr. Google” and heard both positive and critical remarks about the Wilbarger Protocol from other parents.  They are discouraged; concerned that their child is too impaired for it to work, or they are just not coordinated enough to be successful.

Well, I can tell them that the Wilbarger Protocol won’t work well if you don’t do it right.  And you won’t do it right if you weren’t shown correctly.  I suspect that, like a child’s game of “telephone”, their former therapist learned the method from her supervisor, and her supervisor learned the technique from HER boss or teacher.  And THAT therapist learned from her clinical director.  On and on, until there is no understanding of the concepts that form the basis for the technique, such as Gate Theory, or that Pat left the cranial compressions behind in the early to mid-90’s due to the risk of cervical injury.

This technique isn’t easy to do on toddlers or children with ASD.  Being comfortable with  manual treatment helps.  Understanding what not to do helps.  Knowing how to create a receptive state in a special needs child helps.  It takes a level of confidence, experience, and the ability to understand how to adapt it to the specific client without losing the benefit we are seeking:  neuromodulation.  It is possible to do it wrong and unfortunately increase sensory sensitivity or put a child into overarousal.  It is also possible to create joint or tissue damage (likely small, but still possible) with too-vigorous force.

Pat used to have her teaching assistants assess every participant in her training courses to ensure that therapists left knowing what to do and what not to do.  She couldn’t control what happened in anyone’s clinic or school.  If therapists or parents find that they aren’t getting the desired results from this treatment technique, I would encourage them to do some research and find older therapists that may have had direct contact with the inventor of this protocol, or at least a therapist that learned from someone that had the good fortune to learn directly from Pat Wilbarger.

Looking for more information about the Wilbarger Protocol?  Read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for some methods to adapt this brilliant technique for children with connective tissue disorders.

markus-spiske-193031-unsplash

 

 

 

Sensory Stimulation is not Sensory Treatment

alexander-dummer-261098-unsplash

I thought that I might never hear it again, but there it was.  Another parent telling me that a member of her child’s treatment team had placed her hands in a rice-and-bean bin.  “Why?” I asked.  “She said it was sensory.” was the response.  This particular child has no aversions to touch, and no sensory-seeking behaviors either.  Her aversion to movement out of a vertical head position keeps her in my sessions, and her postural instability and hypermobility will keep her in PT for a while. But unless she is swishing around in that box while on a balance board or while she is sitting on a therapy ball (BTW…not) it isn’t therapy.   I struggle to see the therapeutic benefit for her specifically.  It is sensory play, but it isn’t therapy.

It seems that OTs got so good at being known for sensory-based interventions and fun activities, that it appears that engaging in sensory play is therapy.

Let me be clear:  if your child is demonstrating sensory processing issues, random sensory input will not help them any more than random vitamin use will address scurvy or random exercises will tone your belly.

Sensory processing treatment is based on assessment.  Real assessment.  A treatment plan is developed using an understanding of the way individual sensory modalities and combinations of modalities are neurologically and psychologically interpreted (remember, mind-body connection!)  It is delivered in a specific intensity, duration, location and/or position, and in a particular sequence.  I know it LOOKS like I am playing, and the child is playing, but this is therapy.  In the same way that a PT creates an exercise program or a psychotherapist guides a patient through recalling and processing trauma, I have a plan, know my tools, and I adjust activities on the fly to help a child build skills.

I never want to make other professionals look bad in front of a parent.  That’s not right.  I ended up making a suggestion that the therapist could use that would be actually therapeutic.  Some day I hope to finish my next e-book, the one on hypermobility, and hope that the information will expand the understanding of what OT is and is not.  It is absolutely not playing in sensory bins….

nicole-adams-198431-unsplash

 

Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way

david-deleon-307202

Hypermobile children end up in some impressively awkward positions.  It can feel uncomfortable just to look at the way their arms or legs are bent.   It can be an awkward position with 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 this behavior, and have almost eliminated it.  This child is using it to get attention when she is frustrated, not to explore movement or propel herself around the room.  Time to teach other ways to get an adult’s attention and express frustration.

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. Read   Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.  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  and How To Reposition Your Child’s Legs When They “W-Sit”.  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!!

Looking for more information on hypermobility?

I wrote 2 e-books for you!

My first, The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is your guide to helping your child develop independence and safety from birth through age 5.  Filled with practical strategies to help parents understand the complexities of hypermobility, it empowers parents every step of the way.  In addition to addressing all the basic self-care skills kids need to learn, it covers selecting chairs, trikes, even pajamas!  There are checklists for potty training and forms that parents can use to help communicate with teachers, therapists, family members…even doctors!

“Dr. Google” isn’t helping parents figure out how to help their kiss with PWS, SPD, ASD, Down syndrome, and all the other diagnoses that result in significant joint hypermobility.  This is the book that provides real answers in everyday language, not medical jargon.

Read more about this book, and get a peek at part of chapter 3 on positioning for success by reading The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

This unique e-book is available on Amazon as a read-only download or on Your Therapy Source as a printable and click-able download.  Feel more empowered and confident as a parent…today!

Is Your Hypermobile Child Older Than 5?  This is the E-book for You!

The jointSmart Child:  Living and Thriving With Hypermobility Volume Two: The School Years is a larger, more comprehensive book that helps the parents and therapists of older children ages 6-12 navigate school needs, build full ADL independence, and increase safety in all areas of life, including sports participation.  Need to know how to pick the right chair, desk, sport, even musical instrument?  Got it.  Want to feel empowered, not aggravated, at medical appointments?  Got that too!  There are forms and checklists that parents can use to improve school meetings and therapists can use for home programs and professional presentations.  Read more about it here: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

Get my newest book today on  Amazon .  Don’t have a Kindle?  Don’t worry:  Amazon has an easy method to load it onto your iPhone or iPad!

  • joshua-coleman-655076-unsplash

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!

chris-benson-459919

For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up

 

photo-1453342664588-b702c83fc822For children with either low muscle tone or spasticity, toilet training can be a real challenge.  If it isn’t clothing management or making it to the potty on time, they can have a hard time perceiving that NOW is the time to start heading to the toilet.

Why?  Often, their interoception isn’t terrific.  What is interoception?  Think of it like proprioception, but internal.  It’s the ability to identify and interpret sensory information coming from organs and internal tissues.  Among them, the pressure of a full bladder or a full colon.  If you can’t feel and interpret sensation correctly, your only clue that you need the potty is when your pants are soiled.  Uh-oh.  A child with muscle tone issues is almost certainly going to have sensory issues.  Tone will affect the amount and quality of sensory feedback from their body.

What can you do to help kids?  The simplest, and the fastest solution I have found, is to tell them to stand up and see if they have changed their mind.  Why?  Because in a sitting position, the force of a full bladder or colon on the abdominal wall and the pelvic floor isn’t as intense.  Gravity and intra-abdominal pressure increase those sensations in standing.  More sensation can lead to more awareness.

So the next time your child tells you they don’t have to “go”, ask them to stand up and reconsider their opinion.  Now, if they are trying to watch a show or play a game, you aren’t going to get very far.  So make sure that they don’t have any competition for their attention!

Looking for more information on toilet training?  Well, I wrote the (e) book!  The Practical Guide To Toilet Training Your Child With Low Muscle Tone gives you readiness checklists and ways to make readiness actually happen.  It has strategies you can use today to start making progress, regardless of your child’s level of communication and mobility.  Learn what occupational therapists know about how to teach this essential skill!  It is available on my website tranquil babies, on Amazon and on a terrific site for therapists and parents Your Therapy Source.  Read more about my unique book:The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

janko-ferlic-153521

Teach Your Child To Catch and Throw a Gertie Ball

 

71rwmnHGrHL._SL1500_These balls aren’t new, but they don’t get the recognition that they should.  The ability to catch a ball is a developmental milestone.  For kids with low muscle tone, sensory processing disorder (SPD) or ASD, it can be a difficult goal to achieve.  The Gertie ball is often the easiest for them to handle.  Here’s why:

  1. It is lightweight.  An inflatable ball is often easier to lift and catch.  The heavier plastic balls can be too heavy and create surprisingly substantial fatigue after a few tries.
  2. Gertie balls are textured.  Some have the original leathery touch, and some have raised bumps.  Nothing irritating, but all varieties provided helpful tactile input that supports grasp.  It is much easier to hold onto a ball that isn’t super-smooth.
  3. It can be under-inflated, making it slower to roll to and away from a young child.  Balls that roll away too fast are frustrating to children with slow motor or visual processing.  Balls that roll to quickly toward a child don’t give kids enough time to coordinate visual and motor responses.
  4. They have less impact when accidentally hitting a child or an object.  Kids get scared when a hard ball hits them.  And special needs kids often throw off the mark, making it more likely to hit something or someone else.  Keep things safer with a Gertie ball.

The biggest downside for Gertie balls is that they have a stem as a stopper, and curious older kids can remove it.  If you think that your child will be able to remove the stem, creating a choking hazard, only allow supervised playtime.

Looking for more information about sports and gross motor play?  Check out Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility and Should Your Hypermobile Child Play Sports?.  You could also take a look at What’s Really Missing When Kids Don’t Cross Midline?.

rawpixel-1054665-unsplash

Not Making It To the Potty In Time? Three Reasons Why Special Needs Kids Have Accidents

56494543081585p__3

If your special needs child isn’t experiencing a medical reason for incontinence (infection, blockage, neurological impairment) then you might be facing one of these three common roadblocks to total training success:

  1. Your child has limited or incomplete interoceptive awareness.  What is interoception?  It is the ability to sense and interpret internal cues.  The distention of the bladder, the fullness of the colon, etc are all internal cues that should send them to the potty.  Unfortunately, just as poor proprioception can hinder a child’s ability to move smoothly, poor interception can result in potty accidents, among other things.  Working with them to become more aware of those feelings can include monitoring their intake and elimination routines.  You will know when they should have more sensory input, and can educate them about what that means.  Listen to how they describe internal feelings.  Kids don’t always know the right words, so use their words or give them a new vocabulary to help them communicate.
  2. Your child’s clothing is difficult to manage, or their dressing skills aren’t up to the task.  They run out of time before nature calls.  Tops that are hard to roll up, pants that have tricky fasteners, even fabrics that are hard to grasp and manipulate.  All of these can make it a few seconds too long once they get into the bathroom.  If you are not in there with them, you may have to ask them to do a “dry run” so you can see what is going on and what you can change to make undressing faster.  In my e-book, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, I teach parents the best ways to teach dressing skills and the easiest clothing choices for training and beyond.  If you have ever had to “go” while in a formal gown or a holiday costume, you know how clothing choices can make it a huge challenge to using the toilet!
  3. Your child is too far from the bathroom when they get the “urge”.  Children  with mobility problems or planning problems may not think that they are in trouble right away.  They might be able to get to the bathroom in time in their own home.  When they are out in public or at school, the distance they have to cover can be significant, and barriers such as stairs or elevators can be an issue.  Even kids playing outside in their own yards might not be able to come inside in time.  If you can’t alter where they are, teach them to use the potty before they go outside or when they are near the bathroom, instead of waiting.  Taking the time to empty a half-full bladder is better than an accident.

Looking for more information on toilet training?  Read How To Teach Your Child To Wipe “Back There” and Low Tone and Toilet Training: Learning to Hold It In Long Enough to Make It to The Potty.  and of course, my e-book is available for more extensive assistance The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

rodolfo-mari-81201-unsplash

Teaching Safety Awareness To Special Needs Toddlers

daiga-ellaby-699111-unsplash

Parents anxiously wait for their special needs infants to sit up, crawl and walk.  That last skill can take extra months or years.  Everyone, and I mean everyone, uses walking as a benchmark for maturity and independence.

They shouldn’t.  A child with poor safety awareness isn’t safer when they acquire mobility skills.  Sometimes they are much less safe.  Yes, they may be able to move without your help, but they may need to be more highly monitored and given more assistance to learn how to be safe.  They are exploring their environment and their new skills that took them a long time to develop.  They have been wanting to climb on the couch for months.  Now they can.  Getting down the “safe” way isn’t as important to them, and maybe not as easy as sliding or rolling off.  Oops.

What can parents do to help their child be a safer (notice I didn’t say “safe”) ambulator, crawler, cruiser, etc?  

  1. Talk about safety before they are independent.  Will they understand what it means?  Probably not, but your tone and your insistence on how movement is done says that you value safety and you want them to do the same.  Kids learn from all of our actions.  Make this one familiar to them by being very obvious and explicit.
  2. Take your physical therapist seriously when she or he teaches you how to work on core strength and balance skills.  Yes, I still maintain that safety is more than a sensory-motor skill, but having the best possible sensory and motor skills is important.  Having good safety awareness and safety behaviors without these skills will make a child more vulnerable to falls and injuries.
  3. The same goes for sensory processing activities.  If your child cannot perceive the movement of falling, the tactile and proprioceptive change as they crawl or step on something, or tolerate multiple sensory inputs at once, they are much less safe, even with good strength and coordination.  Really.
  4. Know your child’s cognitive and social/emotional skills.  Impulsive children are less safe overall.  Children that cannot process your instructions or recall them without you are less safe.  Children that enjoy defying you more than they want to avoid falling are less safe.  If you know any of these things, you can gauge safety and react more appropriately.  You will be less frustrated and more helpful to them.
  5. Reward safe execution and do not reward unsafe behavior.   My favorite way to avoid punishment but also to send my safety message home?  Not providing eye contact or much at all in the way of conversation as I stop unsafe actions, and either removing a child from an unsafe situation or assisting them in using the safe method to execute their move.  They get no satisfaction from seeing me react strongly, and they get the message that I am not accepting anything but their best safety skills as they move.
  6. Stop a child that is moving in an unsafe way, and see if they can recall and initiate the safe choice before assisting.  You don’t want to teach them that only you will make them safe and they need someone to be safe out there. They have to learn how to assess, react and respond, and all children can build their skills.  Some need more teaching, and some need more motivation to begin to take responsibility for their safety.  Give them both.

david-clode-635942-unsplash

 

Have a Child With Low Tone or a Hypermobile Baby? Pay More Attention to How You Pick Your Little One Up

caroline-hernandez-698708-unsplash

Carrying and holding kids is such a natural thing to do.  But when your child has hypermobility due to low muscle tone, joint issues or a connective tissue disorder, how you accomplish these simple tasks makes a difference.  Your actions can do more than get them from one position or location to another: they can build a child’s skills, or they can increase the risk of damage by creating excessive flexibility or even accidentally injure a child’s joints.

How could something so simple be both a problem as well as an opportunity?  Because hypermobility creates two issues that have to be addressed:  Less strength and stability at vulnerable joints, and less sensory feedback regarding pain and position sense in your child.  The ligaments, tendons, muscles and joint capsule at every hypermobile joint are more likely to be damaged when excessive force is placed on them.

Knowing how much force is too much isn’t easy without some instruction from a skilled therapist.  Depending on your child to react quickly and accurately to accidental stretch or pressure by crying or pulling away isn’t a good idea.  Their excessive flexibility reduces firing of receptors deep within all of these tissues in response to excessive force.  You may have looked at your child’s shoulders or ankles and think “That looks uncomfortable.  Why isn’t she fussing?”  This is the reason.  It means that you will have to be altering your actions to reduce the risk of harm.

As I mentioned earlier, this is also an opportunity.  It is an opportunity to teach your child about safe movement and positioning, right from the start.  Even the youngest child will pick up on your emphasis on alignment, control and safety.  They are always listening and learning from you every day, so incorporate effective movement into your handling and help your child build awareness and independence today!

Here are some strategies for you and your child:

  1. Always spread the force of your grasp over their body, and place your hands on the most stable locations, not the most flexible.  Lift a child through their trunk, not by holding their arms.  If they cannot steady their head, support it while you lift.  If you feel those little bones in their wrists and ankles moving under your grasp, support those joints instead of pulling on them.  Not sure how to do this correctly?  Ask your therapist for some instruction.
  2. Do not depend on a child’s comfort level to tell you how far a joint should stretch.   Think about typical joint movement instead.   If their hips spread very wide when you place them on your hip, think about holding them facing forward, with their knees in line with their hips, not pressed together.
  3. Give them time to move with you.  Those over-stretched muscles are at a mechanical disadvantage for contraction.  This means that when you tell a child to sit up, you have to give them time to do so before you scoop them up.  They aren’t  being defiant or lazy (I have not, in fact, ever met a lazy baby!).  This is a neuromuscular issue.
  4. Discourage unsafe movements.  Some children find that overstretching their joints gives them more sensory feedback.  It feels good to them.  This is not OK.  You will not be able to stop them every time, but they will eventually learn that their is a right way and a wrong way to move.  Knowing why isn’t necessary.  Yet.  Teach them to respect joint movement and use things like graded joint compression and vibration (your occupational therapist should be able to help you with this) to give them the sensory feedback they want.

Still concerned about safety?  Read Teaching Safety Awareness To Special Needs Toddlers  and  Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way to learn more methods to build independence without injury.

 

jacalyn-beales-676455-unsplash

How To Spot A Gifted Child In Your Preschool Class (Or Your Living Room!)

joshua-alfaro-353879-unsplash

Bright kid: “Are there any sharks out there?” Gifted kid:  ” The most common shark in the Atlantic Ocean is the ….”

Do you have a gifted kid?  Do you teach one?  You might not be able to tell the difference between a bright child and a gifted child by the number of letters they know, or the facts about dinosaurs they can recall.  Here are some distinct signs that your child, student or therapy client is actually gifted:

  • They are not a joy to teach.  Bet you didn’t expect that!  Yes, the gifted child isn’t usually sitting there soaking up knowledge.  They are out there arguing points and doing their own experiments.  They see the subtle differences, so they are going to bring up the exceptions to ALL of your rules.  They don’t like rules and correct answers nearly as much as the bright kids.  They are interesting to teach, but they won’t be as easy to teach as the bright children who simply learn what they are told and repeat it back to you.
  • They learn fast.  Really fast.  The typical child will need 15-20 repetitions or demonstrations and practice to learn a skill. The gifted children may only need 1-2 repetitions to learn.  The bright children need 5-8 reps.  So if you demonstrate a dance move or how to write a letter and your child copies you perfectly the first time, you may have a gifted child in front of you!
  • They NEED complexity and novelty.  Note that I said “need” versus “prefer”.  These kids don’t love routines.  They learn them quickly, but they find them boring, not comforting.  They don’t want to hear a favorite book again as much as they want you to read the next book in the series.  Without sufficient stimulation, the gifted child will go find her own entertainment and probably tell you what to do with your routines!  Bright children are often happiest when they can show you what they remember.  Gifted kids like to show you what you aren’t seeing or mentioning about a topic.
  • Gifted children are intensely curious.  This is different in magnitude from a bright child, who is interested in many things and consistently pays attention to stories and lessons.  The gifted child wants to know everything, and they want to know it now.  If the questions that you are asked show a level of synthesis you would not expect based on age and exposure, you may have a gifted child in front of you!
  • They have a lot of energy.  The gifted child may not need that nap, or they may collapse suddenly due to their full-on approach to life.  They could wake up totally ready to go, and go to sleep talking as well.  This is a child that isn’t going to want to be quiet when they have something to say.  The bright kids raise their hands and wait to be called on.  Be prepared to expend some energy yourself to engage with a gifted child.
  • Their passions and ideas can result in daydreaming and preferring to work alone on their projects.  This doesn’t mean they can’t be social.  But it may mean that they see no point in gluing construction paper triangles onto a pumpkin when they could be creating a pumpkin patch and a corn maze like they visited this weekend.  They won’t passively complete your project when they have a better idea of their own.

If you have spotted a child that may be gifted, you will want to offer them the opportunity to expand and explore within your classroom or your home.  You don’t need to label them.  If you find that their abilities place them far outside the reach of your class plan or they complain about school, it may be time to pursue formal testing.  Linda Silverman, a psychologist with a specialization in working with the gifted, suggests that any child that tests more than 2 standard deviations from the the mean (statistically far from average) is in need of special educational services.  Just because gifted kids are not below average doesn’t mean that they don’t have needs.  To learn more about gifted kids, read How To Talk So Your Gifted Child Will Listen and Sensitivity and Gifted Children: The Mind That Floods With Feeling.  Some gifted kids have other issues.  Read Gifted and Struggling? Meet the Twice Exceptional Student and How OT Can Help.

And remember that “gifted” doesn’t mean “better kid”.  It just means better skills.  The gifted population has been hammered for being elitist, when in fact, they receive a lot of criticism and prejudice as well as glory.  Treating these kids fairly will allow them to thrive!

frank-mckenna-127295-unsplash

Picking The Best Bikes, Scooters, Etc. For Kids With Low Tone and Hypermobility

rodolfo-mari-81201-unsplash

Welcome to the world of faster (and faster) movement!  After mastering walking and possibly running, kids are often eager to jump on a ride-on toy and get moving.  If a child has had motor delays and has had to wait to develop the strength and balance needed to use a bike, they may be a bit afraid, or they may throw caution to the wind and try it all as soon as possible!

Selecting the best equipment for kids that have low tone or hypermobility doesn’t end with picking a color or a branded character ( Thanks, Frozen, for bringing up my Disney stock in 2013 almost single-handedly!).  In order to find the right choice for your child, here are some simple guidelines that could make things both easier and safer:

  1. Fit matters. A lot.  Hypermobile children are by definition more flexible than their peers.  Their limbs stretch, a lot.  This doesn’t mean that they should be encouraged to use pedals so far away from their bodies that their legs are fully extended, or use handlebars that reach their chins.  In general, muscles have their greatest strength and joints have their greatest stability and control in mid-range.  Fit the device to the child, not the other way around. Choose equipment that fits them well now,  while they are learning, and ideally it can be adjusted as they grow.  For the youngest or smallest kids, read The Best Ride-On Toy For Younger (or Petite) Toddlers and check out this great ride-on toy!
  2. Seats, pedals and handlebars that have some texture and even some padding give your child more sensory information for control and safety.  These features provide more tactile and proprioceptive information about grip, body positions and body movements.  You may be able to find equipment with these features, or you can go the aftermarket route and do it yourself.  A quick hack would be using electrical tape for some extra texture and to secure padding.  Some equipment can handle mix-and-match additions as well.  Explore your local shops for expert advice (and shop local to support your local merchants in town!)
  3. Maintain your child’s equipment, and replace it when it no longer fits them or works well.  Although it is more affordable to receive second-hand items or pass things down through the family, hypermobile kids often find that when ball bearings or wheels wear down, the extra effort required to use a device makes it harder to have fun.  The additional effort can create fatigue, disinterest in using the equipment, or awkward/asymmetrical patterns of movement that aren’t ergonomically sound.  Repair or replace either than force your child to work harder or move poorly.

Looking for more information about low tone and hypermobility?  

I wrote two e-books for you!

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years  and Volume Two:  The School Years are here!

Both have useful information to make caring for your hypermobile child easier, safer, and both build their independence throughout the day.  This is essential reading for parents of children with PWS, EDS, many forms of SPD, and Down syndrome.  These books cover how to teach your family  members, babysitters and teachers the best ways to work with your child, making life easier for BOTH of you!  They teach parents and therapists how to communicate with families, professionals and community members such as coaches and educators.  There are helpful checklists and forms that make picking the right chairs, clothes, even plates and utensils that make life easier for hypermobile kids.

Understanding that hypermobility creates more than unstable joints is key. Hypermobility creates emotional, social and sensory processing issues that affect a child’s development.  When parents have knowledge, they are empowered and can act as advocates rather than react to situations.  When therapists have a solid treatment plan, they can be amazing clinicians and help a child blossom!  These books are intended to teach new clinicians and parents of hypermobile kids how to make a difference in a child’s life right away.

Pick them up as a read-only download on Amazon ,or as a printable and click-able download on Your Therapy Source today!

Want more posts on hypermobility?  Read The Hypermobile Hand: More Than A Strength Problem , Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.

caroline-hernandez-219836-unsplash

Is Compulsive Gaming A Disorder…Or A Symptom?

holger-link-721614-unsplash

The WHO has recently classified compulsive gaming a mental illness.  I am not so sure.  What I do believe is that doing anything compulsively is a big problem for developing brains.  Is your child heading in the direction of using gaming or web surfing to deal with issues such as social anxiety or poor executive function skills?  Here is what you should be thinking about when you see your young child screaming because you have unplugged them from their tablet (or your phone, or your tablet):

  1. Have you (unintentionally) modeled this behavior for them?  I  don’t know any adult that isn’t tethered to their phone.  Whether for business or to keep track of where their spouse or children are/what they are doing, most of us have a phone that we look at repeatedly all day long.  When you are with your family, think carefully about how important it is to model the opposite and put it down as quickly as possible.  In effect, you are saying “You are more important to me than this device”.
  2. Be clear about what you are doing when you put down the phone in their presence and why.  In the spirit of The Happiest Toddler on the Block, which my readers know I adore, young children need to hear and see you explaining why you are doing what you do.  They don’t assume things the way we do.  Really.  The older they get, the more it appears that they are ignoring you, but don’t you believe it.  Parents are and always will be the most powerful models in a child’s life.  Forever.  Your teen may roll her eyes, but they are still open, and she is watching you.  So tell your child that you want to focus on them, and your phone is a distraction and you can always look at it later.  You want to be with them and pay attention to them.  I know this sounds a bit weird, even awkward and preach-y.  It isn’t if you do it with warmth and confidence.  Find your own wording, but the message is the same: I care more about you than I do about data.
  3. Look around.  Are your child’s activities, toys and games unsatisfying?  Don’t count the toys, look at them and what they offer your unique child.  An artsy child may need new paints, clay, yarn, etc.  A reader may need to go to the library or get a new book series.  Not a digital copy.  A young scientist might need a kit or a microscope.  A social kid may need more playdates or a creative class like cooking.  Their interests and needs may have changed since the last birthday or holiday.  If you want them to play instead of look at a screen, they need things that excite and inspire them, or the digital world will fill in the blanks.
  4. Does your child need help in building skills?  Shy kids, kids with ASD, or kids that don’t make friends easily can find the less-demanding digital world much easier to navigate.  Siblings sit quietly side-by-side, not fighting but also not learning how to solve interpersonal issues.  This isn’t preparing them to go out there and succeed.  The earlier you realize that your child is struggling, the faster you can stop bad habits and prevent rigid behaviors.
  5. I read a challenging piece this week on the origins of addiction to porn that might change your mind on dealing with gaming and digital devices.  The author’s suggestion was that early experiences have impressive power to wire the brain, to the diminishment of alternative methods of engagement and interaction.  I know, not exactly what you would expect me to discuss on my site.  But the problems of finding easy satisfaction through a non-challenging (and solitary) source of excitement fits this post.  Once a behavior is hard-wired into the brain’s system, it is going to be really difficult to change.   Not impossible, but really, really difficult.
  6. Should you ban all media?  You could, but you would be denying the reality that the world they live in is heavily digital.  I tell parents of the kids I treat that I use my tablet in sessions to teach kids that this is just one activity or toy, in the same way that I will eat cookies but not to the exclusion of everything else.  Putting the phone or the tablet away isn’t the end of the world, and using it is not a fabulous reward.

Looking for more on using technology with intent?  Read Want A Stronger Pencil Grasp? Use a Tablet Stylus .  To help kids engage and learn social and emotional skills, read Stop The Whining With The Fast Food Rule.  Yes, it really works!

frank-mckenna-127295-unsplash.jpg

Is Automaticity The Key To Handwriting Success?

tetbirt-salim-696162-unsplash

I know that this is a bold statement.  Handwriting is a complex skill, with visual-motor coordination, perceptual, cognitive and postural components.  But when I evaluate a child’s writing, and I watch them having to think about where to start and sequence movements to form a letter and place it on a line, and then decide how far apart the letters and words should be, it makes me think that the lack of automaticity is often a child’s biggest hurdle.  Even if their motor control isn’t terrific, they can still have legible and functional writing if they make fewer errors and write fast enough to complete their work in a reasonable amount of time.  Slow and labored writing isn’t functional, even if it is beautiful.

Think about how important it is for any visual-motor skill to become automatic in order to be efficient.   You cannot hit that ball if you have to think about it.  You just can’t.  It has to be a smooth and automatic response that comes from practice and refined feedback loops developed by experience.  While practicing, professional athletes drill down on minute aspects of the swing, but during the game, they choke if they “overthink”.  Ask anyone who has done a ton of free-throws in basketball (you get an unimpeded chance to drop that orange ball into the hoop) for practice but cannot make it when the game is on the line.

In this current culture, teachers have so many skills to impart.  Handwriting is still a skill children need.  Paper workbooks and worksheets are still used extensively until 3rd or 4th grade.  You cannot wait it out until kids get old enough to keyboard.  And a struggling writer in second grade is already feeling bad about their abilities. Sometimes so bad that they don’t want to do the language arts work that develops spelling, vocabulary and creative expression.   So waiting until they can type isn’t the answer.  You want excitement and enthusiasm for reading and writing early on.  Nothing develops excitement like success.  Nothing kills enthusiasm like boredom and failure.

If automaticity is the key to handwriting success, how do you develop it in children?  I think the folks at Handwriting Without Tears have figured it out.  I no longer use any other handwriting materials.  Their workbooks and pre-K multi-sensory learning tools are just too good.

  1. If you look at the pre-K and early primary workbooks carefully, you will see that the left-to-right, top-to-bottom orientation is embedded in everything.  Even the cute animals for little kids to color are all facing left-to-right!
  2. The two lines (baseline and midline) are simple to use.  No wondering where to place letters.   The pre-K letters are at the bottom of the page, creating an emerging automatic sense of baseline.
  3. The developmental progression (versus the alphabetical progression) builds slowly from vertical and horizontal lines to curves and diagonal lines.  Letters are grouped by the way they are formed, making automatic movements emerge early and consistently.
  4. Workbook pages aren’t overwhelming with activities, but the skills are repeated to intentionally develop writing automaticity.

For example, instead of writing 12 letter”B”s and 12 letter “b”s,  uppercase letters, with their larger and simpler hand movements are taught together and earlier.  Letters “b” and “d” aren’t taught together since they can easily be reversed.  Letters “b” and “h” are taught together since the formation is very similar.  Fewer reversals, more success without having to go back and re-teach letter formation.

Take a look at the best “pre-K into K” book I have ever seen, HWT’s KickStart Kindergarten.  It is the perfect summer bridge activity for your preschooler or your older special needs child.

Happy summer writing!

 

nikos-zacharoulis-276714

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

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

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

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

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

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

Take look at The Hypermobile Hand: More Than A Strength Problem and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.

Looking for a more comprehensive guide to raise your hypermobile child?

I wrote two e-books just for you!

The Joint Smart Child.inddThe Joint Smart Child.indd

The JointSmart Child series is your practical guidebook to find the best chairs, bikes, desks, and even clothing, while learning that hypermobility isn’t just physical.  The sensory processing and social/emotional consequences of loose joints are real.  Understanding how all three affect development and performance makes parents empowered at school meetings and with doctors.  My books have checklists and forms that families and therapists can use today to improve a child’s skills.

Volume One:  The Early Years addresses all the issues from birth to age 5.  I teach the best ways to carry and hold a hypermobile child, and how to teach babysitters and family  members what they need to know so that mothers have good support systems.  Picking out the right high chair, utensils, toys, and clothes will make a difference when kids are learning to sit, walk, eat and dress independently.  Read more about this book in The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

Volume Two:  The School Years looks at the unique needs of kids 6-12.  It gives parents the information they need to make things go well in the classroom, in sports, and even in music lessons.  Knowing how to help kids write and keyboard with less of a struggle means that there are fewer complaints during homework and self-esteem builds rather than erodes.  Here is an overview of all that Volume Two covers: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

liana-mikah-665124-unsplash

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

andre-hunter-702310-unsplash

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

Here are a few things to think about:

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

For a book that can help teens with the big transitions and the small challenges, check out Book Review From an OTR: Easy For You To Say Q and A’s for Teens Living with Chronic Illness or Disability This book will be a great resource for life issues big and small.  If you or your child isn’t a teen any longer, read “Life, Interrupted” by Laurie Edwards.  She speaks about her challenges with a serious respiratory illness, but the issues regarding school, work, relationships and acceptance are all relevant.

Read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies to learn more about what your teen needs to know to avoid accidentally creating damage because they don’t know what NOT to do!

brevite-434273

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

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

Should you use a low bench or a chair?

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

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

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

Which kids don’t do well with these chairs?  

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

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

You may add a firm foam wedge to activate trunk muscles if they can use one and still maintain their posture in this chair, or use the Stokke-style chair (A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair ) or the Rifton chair until your child has developed enough control to take advantage of a cube chair.  If your child sits on the floor but uses a “W-sitting” pattern, learn about alternatives in Three Ways To Reduce W-Sitting (And Why It Matters) .  Need a table-and-chairs set?  Read Like The Cube Chair? Here Is a Table and Chairs Set For Younger Toddlers!  .  And for high chairs, read How To Pick A High Chair For Your Special Needs Child

Looking for more information on positioning and play?  Check out Kids With Low Muscle Tone: The Hidden Problems With StrollersFor Kids With Sensory Issues and Low Tone, Add Resistance Instead of Hand-Over-Hand Assistance .

And of course…my NEW e-book!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One The Early Years is now available on Amazon.com  as a read-only download and at Your Therapy Source as a clickable and printable download.

It has an entire chapter on seating and positioning for ages 0-5, and so much more.  You will learn what therapists know about positioning, and then some!  Chapters on how to carry and hold a child, how to build safety at home and in the community, and how to talk with your family, teachers, friends and even your doctor about your child’s needs!  Read more here: Parents of Young Hypermobile Children (and Their Therapists) Finally Get Their Empowerment Manual!

Worried about toilet training?  I wrote the e-book you are looking for!  

Read The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived! to learn why my book will help you more than a generalized special needs toileting book.  OK, I’ll tell you:  you learn why low tone makes thing harder, and why doing pre-training is like investing money for retirement.  It pays off in the long run!  Loaded with checklists and quick reference summaries made for busy parents, this book is filled with things you can start using immediately, even if your child isn’t close to independence.

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

colin-maynard-231363

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

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

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

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

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

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

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

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

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

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

nikos-zacharoulis-276714

OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues

shopping-2.jpeg

shopping-1.jpegshopping.jpeg

Does your child knock over her milk on a daily basis?  Do utensils seem to fly out of your son’s hands?  I treat kids with hypermobility, coordination and praxis issues, sensory discrimination limitations, etc.; they can all benefit from this terrific line of cups, dinnerware and utensils.

Yes, OXO, the same people that sell you measuring cups and mixing bowls: they have a line of children’s products.  Their baby and toddler items are great, but no 9 year-old wants to eat out of a “baby plate”.

OXO’s items for older kids don’t look or feel infantile.   The simple lines hide the great features that make them so useful to children with challenges:

  1. The plates and bowls have non-slip bases.  Those little nudges that have other dinnerware flipping over aren’t going to tip these items over so easily.
  2. The cups have a colorful grippy band that helps little hands hold on, and the strong visual cue helps kids place their hands in the right spot for maximal control.
  3. The utensils have a larger handle to provide more tactile, proprioceptive and kinesthetic input while eating.  Don’t know what that is?  Don’t worry!  It means that your child gets more multi-sensory information about what is in her hand so that it stays in her hand.
  4. The dinnerware and the cups can handle being dropped, but they have a bit more weight (thus more sensory feedback) than a paper plate/cup or thin plastic novelty items.
  5. There is nothing about this line that screams “adaptive equipment”.  Older kids are often very sensitive to being labeled as different, but they may need the benefits of good universal design.  Here it is!
  6. All of them are dishwasher-safe.  If you have a child with special needs, you really don’t want to be hand-washing dinnerware if you don’t have to.

For more information about mealtime strategies, please take a look at Which Spoon Is Best To Teach Grown-Up Grasp? and Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child.

thanh-tran-369711.jpg

Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?

guillaume-de-germain-329206

My posts on proprioception and hypermobility have been popular lately, leading me to think that parents (and therapists) want more information on the sensory basis for their children’s struggles, and that often their treatments don’t include addressing their sensory processing issues.

The Ehles-Danlos Syndromes (yes, there are more variants than just vascular and hypermobile!) are somewhat rare connective tissue disorders that can create generalized joint hypermobility.   Kids with EDS are often diagnosed as having a coordination disorder before they get the EDS diagnosis, and their families describe them as “clumsy” or even “lazy”.  I see them as having sensory processing issues as well as neuromuscular and orthopedic issues.   Take a look at Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for more on this subject.  If you are an OT or a PT and you are thinking of using K-tape, read my post Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders? before you begin.  You may change your approach and expand your thinking about taping after you read it!

There are some caveats in using techniques from sensory integration protocols with this population.  This doesn’t mean “no”; it means think about it first.  The use of the Wilbarger Protocol is one that requires some thought before initiating with EDS kids.

The Wilbarger Protocol:

For those of you who are unfamiliar with the Wilbarger Protocol, it is a common treatment approach for children with sensory sensitivity, sensory discrimination issues and poor sensory modulation.  Created by Patricia Wilbarger, a terrifically talented OTR  who directly trained me as a young therapist, it is a neurologically-informed treatment that can be used quickly for both immediate improvement in sensory processing and it can make long-term alterations in the brain’s ability to use sensory input for movement and state control.  The Wilbarger Protocol involves skin brushing and joint compression in a carefully administered method that uses the “gate theory” of sensory processing to assist the nervous system in regulating awareness and arousal.

There have been other protocols for regulation developed over the years, and adaptations to the Wilbarger Protocol have occurred since it’s creation.  But daily and repeated use of brushing the skin and use of joint compression to deliver deep pressure input (to inhibit light touch registration and enhance proprioceptive discrimination) are the cornerstones of treatment delivery.

Adapting the Protocol for Ehlers-Danlos Syndrome

Understanding the systemic nature of EDS is important.  Often therapists are unaware of the precautions since the child doesn’t have a formal diagnosis Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue?.  Since the Wilbarger Protocol was not created to treat EDS, I am recommending that therapists and parents consider adapting it to protect the joints and skin of children with EDS while still gaining benefit from this technique:

  • Reconsider using the brush.  Although the dual-treatment of brushing and joint compression makes this technique a powerful approach, kids with EDS often have skin that is more fragile than average.  It can bruise and tear more easily, especially with the vascular or classic EDS subtypes.  Small children will be brushed repeatedly over the same skin area, increasing the risk of shear, abrasion and bruising.  Children (and adults) with EDS will have skin reactions far in excess of the amount of pressure applied.  This is related to the assumption that the connective tissue that makes up skin and blood vessels is either weaker or thinner than typical children.  My advice: go with the joint compression component alone, and see if you get a clinically valid result without the risk of skin damage.
  • Make sure that you are well-trained in the positioning and administration of joint compression.  I have taken joint mobilization training courses, as well as having dual licenses in massage therapy and occupational therapy.  Being able to feel correct joint position and alignment is absolutely key when children have loose joints, so use this technique with care.  Avoid painful joints and limit repetition to the shortest amount needed to see a clinically meaningful response.
  •  Train parents extremely well before recommending home use.  Most parents can learn this technique with the right explanation and some practice.   If a parent seems unable to perform joint compression correctly, reconsider the use of a home program.  This has only happened once in my career.  A mom was truly unable to perceive the amount of force she was using.  She admitted that this had been an issue for her since childhood, and I suspected that she had her own sensory processing issues.  We moved on to other treatment choices.  There is never a reason to stick with a treatment that causes a risk to a child or makes a parent feel like they are a failure.  Ever.  To read more about the Wilbarger Protocol, read Why Is The Wilbarger Protocol So Hard To Get Right?

The true skill of a therapist is the ability to offer the just-right challenge to each child, based on a therapist’s observations, assessment and knowledge base.  I believe that there are many kids with EDS that could benefit from the Wilbarger Protocol when it is effectively adapted to their needs.

 

Looking for more information?

I wrote 2 books to help parents and new therapists address hypermobility in  children!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years and Volume Two:  The School Years are  guides that tels you how to pick the right seating, the right clothing, the right utensils and how to adapt your home for safety without making it look like a therapy clinic!  These unique books teach parents how to help their children build independence in all the basic self-care and school skills they need.  There are chapters that explain how to communicate with babysitters, family members and even doctors.  Good communication makes parents feel empowered and confident.

They are available on Amazon as read-only downloads and on Your Therapy Source as  printable and click-able downloads.

Read more here:    A Practical Guide to Helping the Hypermobile School-Age Child Succeedand The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

 

Need more than blog posts or a book?  Visit my website tranquil babies and purchase a phone/video session to discuss your concerns and learn about what occupational therapy has to offer your child!  Are you a new therapist, or new to pediatrics?  Let me help you build your skill set and amaze your clients with a mentoring session.

chris-lawton-484907