Tag Archives: occupational therapy

The Subtle Ways Chronic 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.
  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

Advertisements

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

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

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