Tag Archives: low tone

Should Your Hypermobile Child Play Sports?

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Kids with hypermobility fall on a very wide spectrum.  Some are strong and flexible, allowing them to compete in gymnastics and dance with ease or even excellence.  Some kids are prone to injury; they spend more time on the sidelines than on the field.  And some need to have P.E. classes adapted for them or substituted with physical therapy.

Wherever your child lands on this spectrum of ability, it is likely that they want to be able to participate in sports, and you want them to be able to do so as well.  Engaging in sports delivers a lot of positives:  conditioning, ability to work in a group, ability to achieve goals and handle failure/loss, etc.  Most therapists and doctors will say that being as physically active as possible enhances a child’s overall wellness and can be protective. But every child is different, and therefore every solution has to be tailored to the individual.

Here are a few questions to guide your assessment  (and involve your child the  decision, if they are old enough to be reflective instead of reactive to questions):

  1. Is this activity a high or low-risk choice?  High-risks would include heavy physical contact, such as football.  Tennis requires hitting a ball with force and rapid shifts of position with lots of rotation of the trunk and limbs.  I am going out on a limb, and say that ballet on-pointe is a high-risk choice for kids with lower-body weakness and instability.  The question of risk in any activity has to be combined with what is risky for each child.
  2. Will endurance be an issue, or will there be flexible breaks?  Activities that require a lot of running, such as soccer and lacrosse, may be harder than dance classes.
  3. Are there ways to support performance, such as braces, kineseotaping or equipment modifications?  A great pair of skis or shoes can help tremendously in sports.  So can targeted exercises from a physical therapist or a well-trained coach that understands the needs of the hypermobile athlete.  Your child may not be able to be on a travel team due to the intense demands and greater risk of injury due to fatigue/strain, but be very satisfied being on a local team.  For the smallest kids, even changing your trike can make a difference Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility.
  4. Will your child report pain or injury and ask for assistance?  Some kids are very proactive, and some will try to hide injuries to stay in the game or on the team.  Without this knowledge, no coach or parent is able to make the right/safe choices.  Sometimes it’s an age thing, where young children aren’t good communicators or teens are defending their independence at the cost of their health.  If you think that your child will hide injuries or push themselves past what is safe for their joints, you will have to think long and hard about the consequences of specific activities.
  5. Within a specific sport, are there positions or types of participation that are well-suited for your child’s skills and issues?  Skiing wide green (easy) slopes and doing half-pipe snowboard tricks are at distinct ends of the spectrum, but a hypermobile child may be quite happy to be out there in any fashion without pain or injury.  Goalies are standing for longer periods but running/skating less.  Endurance running and sprinting have very different training and participation requirements.
  6. Sadly, hypermobility can progressively reduce participation in sports.  Not for all kids, and not even for kids with current issues.  Children can actually be less hypermobile at 12 than they were at 3.  They build muscle strength as well.   It happens.  Therapy and other strategies like nutrition and orthotics can make huge improvements for hypermobile kids who want to play sports.  But too often, the child who is pain-free in dance class at 7 isn’t pain-free at 14.  This doesn’t have to be a tragedy.  Kids can be supported to adjust and adapt so that they are playing and working at their current maximal level.  Your child may find that changing sports is easier than struggling or suffering in a sport that is now difficult for them.  Good physical or occupational therapists can help you figure out how to make athletic activities fun and safe!

For more information regarding hypermobility, please read Hypermobile Kids, Sleep, And The Hidden Problem With Blankets ,  Can You K-Tape Kids With Connective Tissue Disorders?  and Should Hypermobile Kids Sit On Therapy Balls For Schoolwork?.

Is your child not a child anymore?  One issue for tweens and teens is looking at the future in terms of jobs and careers.  Take a look at  Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues for some strategies to help your child think clearly but positively about their future.

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How To Teach Your Child To Wipe “Back There”

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Potty training is a process.  For most kids, the final frontier is managing bowel movements.  Compared to learning to pee into the toilet, little kids are often more stressed by bowel movements and have less opportunities to practice.  Constipation or just the discomfort of normal elimination can make them wary, sometimes enough to convince some children that this is a process better done in a diaper.  In comparison, urination isn’t an uncomfortable experience for healthy children.  Bowel movements sometimes happen only a few times a week, instead of the multiple times a child needs to urinate per day.  Less practice and fewer opportunities for rewards (even if your reward is warm praise) make bowel training harder.

So when they finally make the leap and manage to do #2 in the toilet, a lot of parents decide to delay teaching their child how to wipe themselves.  After all, wiping can be messy and it has to be done well enough for good hygiene.  Here are my top suggestions to make “making” a complete success:

  1. Teaching should still be part of your narrative while you are the one doing the wiping.  In my book, The Practical Guide To Toilet Training Your Child With Low Tone, I teach parents how to transform daily diapering into pre-teaching.  While you are wiping, and even while you are waiting for them to finish on the toilet, your positive narrative about learning this skill doesn’t end.  You are telling your child how it’s done, in detail, as you are doing it. You convey with your words, your tone and your body language that this is a learn-able skill.
  2. Don’t forget the power of the “dry run”.  Practice with your child when he is in the bathroom, whether it is before bath time, before dressing, or during a special trip to the bathroom to practice.  Dry runs take away the mess but teach your child’s brain the motor planning needed to lean back, reach back and move that hand in the correct pattern.  The people that invented the Kandoo line of wipes have an amusing way to practice posted on their site:  spread peanut or sunflower butter on a smooth plate, and give your child some wipes or TP.  Tell him to clean the plate completely.  This is a visual and motor experience that teaches how much work it is to clean his tush well.  After this practice, your child will make a real effort, not just wave the paper around.  Brilliant!
  3. Will you have to reward him for this practice? Possibly.  It doesn’t have to be food or toys.  It could be the ability to choose tonight’s dessert for the family, or reading an extra two books at bedtime.  You decide on the reward based on your values and your child’s desires.
  4. Use good tools.  The adult-sized wet wipe is your friend.  The extra sensory information of a wet wipe versus a wad of dry paper is helpful when vision isn’t an option.  They are less likely to be dropped accidentally when clean, but having a good hold is especially important after it has been used. “Yucky”stuff  makes kids not want to hold on!  Wet wipes are more likely to wipe that little tush cleanly.  Don’t cut corners.  Allow your child to use more than one.
  5. Take turns.  Who wipes first and who bats “clean-up” (couldn’t resist that one!) is your decision.  Some children want you to make sure they are clean before they try, and some are insistent that they go first with anything.  This can change depending on mood and even time of day.  Be flexible, but don’t stand there like a foreman, ordering work but not willing to help out.  One of my favorite strategies is to always offer help, but be rather slow and inefficient.  This gives children the chance to rise to the occasion but still feel like you are always willing to support them.

 

Looking for more information on toilet training?  Take a look at my e-book, The Practical Guide To Toilet Training Your child With Low Muscle Tone to get a clear understanding of how to prepare for and execute your plan without tears on both sides.  Will it help you even if your child doesn’t have low muscle tone?  Of course!  Most of my techniques simply speed up the learning process for typically-developing children.  And who doesn’t want to make potty independence happen faster?

This e-book is available on my website tranquil babies, at Your Therapy Source (a great site for parents and therapists), and on Amazon.  Read more about my book with Amazon’s “look inside” section, or by reading The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

Teach Kids With EDS Or Low Tone: Don’t Hold It In!

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People who have read my blog are aware that I wrote a book on toilet training, The Practical Guide to Toilet Training Your Child With Low Muscle Tone. The issue of kids who “hold it in” didn’t make it into the book, but perhaps it should have. Children that have problems with muscle tone or connective tissue integrity (or both) risk current and future issues with incontinence and UITs if they overstretch their bladder or bowel too far. We teach little girls to wipe front-to-back to prevent UTIs. We need to teach all children to avoid “holding it in” in the same manner that we discourage them from w-sitting.

I am specifically speaking here about kids with Ehlers Danlos Syndrome, Down Syndrome and all the other conditions that create pelvic weakness and muscle control issues. But even if your child has idiopathic low tone (meaning that there is no identified cause) this can still become a problem.

The effects of low tone and poor tissue integrity on toilet training are legion. Many of them are sensory-based, a situation that gets very little acknowledgment from pediatricians. These children simply don’t feel the pressure of their full bladder or even a full rectum with the same intensity or discomfort that other children experience. This is known as poor interoception, a sensory-based issue that is rarely discussed, even by parents and occupational therapists that are well versed in other sensory processing issues.  For more on how sensory problems affect toilet training, see Why Low Muscle Tone Creates More Toilet Training Struggles for Toddlers (and Parents!).   Kids that don’t accurately perceive fullness can be “camels” sometimes, holding it in with no urge to go, and have to be reminded to void. It can be more convenient for the busy child to keep playing rather than go to the bathroom, or it can save a shy child from the embarrassment of public bathrooms; she prefers to wait until she returns home to “go”.

This is not a good idea at all! The bladder is a muscle that can be overstretched in the same way the hip muscles loosen in children who “W-sit”. Don’t overstretch muscles and then expect them to work well. In addition, the ligaments that support the bladder are subject to the same sensory-based issues that affect other ligaments in the body: once stretched, they don’t bounce back. Holding urine instead of eliminating just stretches vulnerable ligaments out.  A weak pelvic floor is nothing to ignore. Ask older women who have had a few pregnancies how that is working out for them.

For children with connective tissue disorders such as Ehlers-Danlos syndrome, another comorbidity (commonly occurring disorder) is interstitial cystitis (IC).  What does that feel like? The pain of a bad urinary tract infection without any bacterial infection.  Anything that irritates the walls of the bladder adds stress to tissue.  Regular elimination cannot prevent IC, but good bladder care could minimize problems.  Not holding it in is part of good bladder care.

The stretch receptors in both the abdominal wall and in the bladder wall that should be telling a child with low tone that it is time to tinkle just don’t get enough stretch stimulation to do so when they have been extended too far.

When should you teach a child not to hold it in?  Right from the start.  The time to prevent problems is when a child is developing toileting habits, not when problems have developed.

So….an essential part of toileting education for children is when to head to the bathroom. If your child has low muscle tone or a connective tissue disorder that creates less sensory-based information for them, the easiest solution is a routine or a schedule. They use the bathroom whether they feel they need to or not. The older ones can notice how much they are voiding, and that tells them that they really did need to “go”.   The little ones can be rewarded for good listening.

Understanding that the kidneys will fill up a child’s bladder after a large drink in about 35-45 minutes is helpful. But it can always be the right time to hit the bathroom shortly after a meal, before leaving the house, or when returning home. As long as it is routine and relatively frequent, it may not matter how a toileting schedule is created. Just make sure that as they grow up, they are told why this is important. A continent child may not believe that this is preventing accidents, but a child who has a history of embarrassing accidents in public may be your best student.

Many kids with hypermobility have bedwetting issues long after most kids are continent at night.  It helps to tell them why this may be an issue for them.  Without that discussion, kids often assume that there is something inherently wrong with them as people.  Don’t let your child’s self-esteem drop because they don’t understand why this is such a hard thing to accomplish.  Understanding also makes them more willing to follow a toileting schedule or to focus on developing interoceptive awareness.  If you are wondering if your child’s hypermobility has emotional and behavioral impact, read How Hypermobility Affects Self-Image, Behavior and Regulation in Children and Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior .

For little girls who are at a higher risk of UTIs, I tell parents to teach wiping after urination as a “pat-pat” rather than the standard recommendation of front-to-back wiping.  Why?  Because children aren’t really good at remember that awkward movement, and even if you are standing right their reminding her, she may just wipe back-to-front because that is easier and more natural.  “Pat-pat” is an easy movement and reduces her risk of fecal contamination.  I cannot tell you I have done hard research on this strategy reducing infections, but then, I have common sense.  This is the smarter way for her to wipe.  Want more info on wiping?  Check out How To Teach Your Toddler To Wipe “Back There”

The good news in all of this? Perceiving sensory feedback can be improved. There are higher-tech solutions like biofeedback, but children can also become more aware without tech. There are physical therapists that work on pelvic and core control, but some children will also do well with junior Kegel practice and education and building awareness of the internal sensations of fullness and urgency.  Many occupational therapists use the Wilbarger Protocol for general proprioceptive awareness.  If your child has Ehlers-Danlos Syndrome, please read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for information on how to use this treatment technique wisely.

Good luck, and please share your best strategies here for other parents!!

 

Looking for more toilet training information?

My e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, has readiness checklists that help you decide what skills to work on right away, and detailed strategies for every stage of training.  I want children to become independent and confident, and for parents to feel good about their role in guiding kids to develop this important life skill.

If you are interested in purchasing The Practical Guide to Toilet Training Your Child With Low Muscle Tone, please visit my website, tranquil babies and click on “e-book” at the top ribbon. You can also buy it on Amazon and your therapy source

The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

photo-1445800363697-51e91a1edc73  Toilet Training Help Has Arrived!             

My most popular post,  Why Low Muscle Tone Creates More Toilet Training Struggles for Toddlers (and Parents!) inspired me to write a manual to help parents with potty training.  There was nothing in books or online that really helped families, just a few lines about being patient and not pushing children….no help at all!

What makes this book so unique?  Media specialists say that you have to be able to explain your product in the time it takes for the average elevator ride.  OK, here is my elevator speech on The Practical Guide to Toilet Training Your Child With Low Muscle Tone:

My book provides a complete explanation of the motor, sensory, and social/emotional effects that low muscle tone has on toilet training.  It does so without being preachy or clinical.  Parents understand whether their child is ready to train, and how to start creating readiness immediately.  They learn how to pick the right potty seat, the right clothes, and how to decide between the “boot camp” or gradual method of training.  A child’s speech delays, defiance or disinterest in potty training are addressed in ways that support families instead of criticizing them.

  • Each readiness quiz helps parents figure out what issues need to be addressed for successful training and reminds them of their child’s strengths.
  • Chapter summaries give a quick review of each section.  Parents decide which chapter they need to read next to get more information.
  • Clinical information is explained in layman’s terminology, so parents don’t have to Google “interoception” to understand the neurology that causes a child not to recognize that they have a full bladder.

Here’s what parents are saying about The Practical Guide”:

The Practical Guide has truly been heaven sent!  Although my globally delayed 5-year old daughter understood the idea of toileting, this skill was certainly not mastered.  Our consultations with Cathy and her guide on how to toilet train have given me the knowledge I’ve needed to understand low tone as a symptom that can be tackled.  Morgan has made visible advances, and I am so encouraged and empowered because I know what piece we need to work on next.  Thank you, Cathy, for writing this book!”      Trish C, mother of Morgan, 5 years old

“I would often say to myself “Cathy has to put all of her accumulated wisdom down into a book”.  I am happy to say-here it is!  You will find no one with more creative and practical  solutions.  Her insights and ideas get the job done!”     Laura D. H., mother of M., 4 years old 

Cathy has been a “go-to’ in every area imaginable, from professional referrals to toilet training.  I can’t say enough positive things about her.  She has been so insightful and helpful on this journey.”  Colleen S. mother of two special needs children

Want a bit of a preview?  Here is a small section from Chapter One: Are You Ready For Toilet Training?  Is Your Child?

Parents decide to start toilet training for three primary reasons.  Some families train in anticipation of an outside event, such as enrolling their toddler in a preschool that doesn’t change diapers.  Another example would be the impeding birth of a sibling  Parents who want to train their older child hope that they can avoid having two children in diapers, They do not expect to have the time and attention for training after their new baby arrives.

The second common reason to begin training is when their child achieves a skill that parents believe to be a precursor to successful toileting.  For example, when children learn a word or a sign for urination, adults may thing that they may finally be able to train them.  The final reason is when school staff or their peditriaicna recommends that they start training.  whatever your reason, you are reading this book because you are wondering if you and/or your child could be ready for toilet training.

These are the eight types of toileting readiness: 

  1. Financial
  2. Physiological
  3. Communication 
  4. Cognitive 
  5. Social/emotional 
  6. Clothing Management
  7. Time and Attention
  8. Appropriate Equipment

How can you find my book?  Three ways:  Visit my website  tranquil babies and click on “e-book” at the top of the homepage, buy it on Amazon, or visit your therapy source, a wonderful site for parents and therapists.  Just search for The Practical Guide to Toilet Training Your Child With Low Muscle Tone!

HELP HAS ARRIVED!

Low Tone In The Summer: Why The Heat Affects Your Child’s Safety

 

rawpixel-653771-unsplashIf you have a child with low muscle tone, you may have seen them wilt like flowers in the sun.  Even if they are well-hydrated, even if they are having fun, they just can’t run as fast or sit as steadily when they are warm.  Add a SPIO vest or other compression garment, and the tripping and falling seems to happen more often.  What gives?

Just like a warm bath relaxes your tight shoulders after a long day, heat relaxes muscles.  It doesn’t matter if the heat is environmental or neutral warmth, the kind that is generated by your child’s own body and is held in by the SPIO or her clothes.  It is still heat.  And some kids with low tone don’t sweat efficiently, using the body’s natural method of heat reduction.  This isn’t a minor concern if you have a child that is pretty unsteady on a cool day.  Kids with low tone that are out and about in the heat can become so floppy that they stumble and get injured.  That is a problem.

What can you do?  Well, you may not be able to wear that SPIO in the heat.  Try kineseotaping instead.  (ask your OT or PT if they have been trained in it’s use).  Alternate time in air conditioning and time outside.  Offer cold drinks and ice pops if they can lick and swallow an ice pop safely.  Dress lightly and choose clothes with fabrics that evaporate body heat.  Choose shoes that offer more support, not Crocs or sandals.  This is not the time to pick the least-supportive footwear.

Most importantly, monitor them for safety and be aware that children really cannot judge whether or not they should come in and cool off.  They are counting on you to keep them safe!

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Low Tone and Toilet Training: What You Can Learn From Elimination Communication Theory

Yes, those folks who hold a 6 month-old over the toilet and let her defecate directly into the potty, not into a Pamper.  Elimination Communication (EC) has committed fans, as well as people who think it is both useless and even punishing to kids.  I am not taking sides here, but there is one thing that should get even the skeptics thinking:  a large portion of the developing world deals with babies and elimination this way.  It is very hard to buy a disposable diaper in Nepal, and it is a problem finding water to wash cloth diapers in the Sahara.  I know there are a bunch of parents who roll their eyes whenever EC comes up, but some aspects of the process could help you train your child to use the toilet.  Why not consider what you could learn from EC that will help your child?

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First, parents who practice EC become very very good at anticipating when their kids are going to need the toilet.  Signs such as grunting, flexing the trunk forward, even facial expressions are quickly noted.  If you spend a lot of time watching your child then you probably know some of the signs.  This makes it easier to tell them to sit on the potty when their attempts will actually be successful.  You can also help them connect the physical feelings they are reacting to with language.  Telling them that when they get that feeling in their belly, they need to go use the toilet sounds so obvious to us.  But if you are little, you need help connecting the dots.  If you are little and have learning issues, you need to hear it more often and stated clearly.

Secondly, EC counts on knowing that reflexive intestinal movement happens about 30 minutes after food enters the stomach, and kidneys dump urine into the bladder about 30-45 minutes after a big drink.  Unless your child has digestive issues, this is a good start to create your initial potty schedule plan.  Kids with constipation or slow stomach emptying may take longer, but you already know that you have to work on those issues as well to be successful in toilet training.  Remember, if your child is roaming the house with a sippy cup, it is going to be a lot harder to time a pee break so that they have a full bladder (remember the issue with poor proprioception of pressure in low tone?).  If not, check out  Why Low Muscle Tone Creates More Toilet Training Struggles for Toddlers (and Parents!)  Toilet training is a good time to limit drinking to larger amounts at meals and snacks.  This will work for preschool preparation as well.  Most programs would not allow your child to wander with a cup for hygiene reasons, and you are helping them get off the “sippy cup syndrome”, in which children trade bottle chewing for sippy cup slurping.

Think that embracing EC fully will fast-track your kid?  Not necessarily.  In fact, some EC kids struggle to become more separated from a parent as they are not cradled any longer while “making”.  Taking responsibility for their own hygiene and awareness can be harder for some very attached children than if they were using diapers and used them independently.  But EC concepts are something to think about carefully when you are making your plan to help your child with low muscle tone.

 

 

Low Tone and Toilet Training: Parents And Children Need To Work Together

This one is simple to explain, but not so easy to achieve with some kids.  Children whose interactional pattern is defiance or whining are going to be much harder to train, regardless of whether or not they have significant issues with low muscle tone.  In fact,  I would rather coach a very physically unstable but cooperative child than a toddler with mildly low tone but a firm commitment to resist any adult request.   If both parties aren’t able to work together, things may not go well.  At all.

Toddlers and preschoolers are known for their tendency to love the word “no”.  Did you know that, developmentally, the high-water mark for hysteria and the reflexive “no” is between 18 and 24 months?  Yup, that’s when language skills haven’t emerged to support expressing feelings and comprehending adult reasons. It is when emotional fuses are neurologically short, as in that forebrain is still sooo immature.   They really can’t handle their emotions at all on a brain level.  They have just left that sweet-baby phase where they want to please you more than anything, and they can’t be quite as easily distracted from bad behavior now.  This is a generalization, and there are some parents reading this that are thinking “We never got that lovely baby phase.  He went from crabby infant to bossy toddler!”  Well, I sympathize,  and I still invite you to read on.  All is not lost.  As language, emotional and reasoning skills slowly grow, a child who still falls apart easily and rages constantly isn’t always at the mercy of neurology as much as not having some basic coping skills.  It’s time to work on them before you jump into potty training.

Toddlerhood is long, all the way up to 5 years-old, and I won’t minimize the tantrums and agitation that can emerge.  This extended path to greater maturity is why I bought, devoured and constantly use The Happiest Toddler on the Block, Dr. Harvey Karp’s great book on building toddler coping skills. Half of the benefit is learning to both listen to and talk to toddlers in a way that calms things down.  I could not do my work as a pediatric occupational therapist with as much joy and enthusiasm as I have without these strategies.  Thanks, Dr. Karp!

For parents of children with language, communication or cognitive issues that result in developmental delays, your child may be 4 years-old but their other skills that are closer to 18 months old.  You can still toilet train.  Has your child been diagnosed on the autistic spectrum?  You can still train them.  Really.  The process may take longer and you may have to be both very creative and very consistent, but it can be done.  Job #1 is still the same: building a cooperative and warm relationship.

If your days are defined by defiance and whining, you need to learn all of the Happiest Toddler techniques that reduce frustration, including Patience Stretching and the Fast Food Rule.  Stretch Your Toddler’s Patience, Starting Today! You need to use “time-ins” for shared fun and warmth without a goal in mind.  You could try some of the more language-based techniques such as Give It In Fantasy and Gossiping.  And of course, you need to look at your approach to setting limits. All that love is great, but if your child knows that there are no consequences to breaking family rules or aggression,  your plan is in trouble.  Dr. Karp’s techniques aren’t intended to be a toilet training plan, but they set the stage for learning and independence.  Those are the ultimate goals of toilet training!

If you would like a more detailed or more personal level of support, visit my website tranquil babies  and purchase a consultation (in the NY metro area) or a phone/video consult!