Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing

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Therapists always try hard to be optimistic when discussing their pediatric client’s future.  Why not?  Kids have amazing potential, and we aren’t fortune tellers; there are so many things that can go right.

As therapists, we also should share the reality of how bad choices create unfortunate consequences.  Among them are the long-term results of falls, especially head injuries.  Kids fall, kids trip, kids walk into things.  All kids, and for much of early childhood.  The hypermobile child will have more episodes of injury, often has greater injury occurring in each episode, and frequently experiences a slower or less complete recovery from injury.  This isn’t a criticism of parents, kids, or even acute medical care.  It is the reality of living with a condition, often a syndrome, that has effects beyond just loose joints.

This can include connective tissue disorders that create weak skin, ligaments, and tendons, decreased pain registration, delayed protective reactions when falling, and cognitive or behavioral complications that make learning and controlling actions more difficult.  Hypermobile kids often spend more years in an unstable state in which they need assistance and supervision.  And more years when they are vulnerable to serious injury.  A head injury or a spine injury isn’t an “unfortunate” event.  It is frequently a life-changing event.  The course of education and employment can be forever altered.  For the worse.

In a clinic or school setting, your therapist is bound to guidelines that indemnify them and the facility. While they cannot control what happens at home, you should know what to do to make your home safer for a child with hypermobility.  It begins with your environment, then you change your responses, then your build  your child’s ability to incorporate safety awareness into their day.

  • Create a safe but accessible home.  This expands on “baby proofing” to include railings set at a height that allow your child to push up rather than hang on them.  Removal of loose rugs and adding padded floor surfaces in common areas, especially areas where they are climbing or running.  Bathrooms are the location for many injuries once children become independent in toileting or bathing.  Instead of supervising them forever, create a safe place with hidden grab bars (there are toilet paper holders and towel racks that are actually grab bars) and non-slip flooring.  Place needed items within easy reach without climbing.
  • Teach safe movement from the start.  Children that learn how to move versus children that are passively moved will have more safety awareness.  For children that still need a lot of help, narrate your moves and weave in safety messages.  It will sink in.  Finally, don’t allow unsafe moves, even if they didn’t hurt themselves.  Tell them to try it again the safe way.  Children are unable to anticipate the results of their actions.  This is why we don’t let 12 year-olds drive or let 5 year-olds cross the street alone.  Sometimes the reason they do things our way is because we said so.  Until they are old enough to understand the “why”.
  • Share your thought processes with children as soon as they can wrap their heads around things.  Even kids in preschool can follow along with the idea that too many “boo-boos” will stop them from being able to play.  Older kids can learn that the right chair helps them stave off fatigue until they finish a game.
  • Ask your therapists for specific safety advice, and then carefully think through their answers.  The truth is that some therapists are more safety-aware than others.  I have been told that I am one of the most vocal therapists on a team when regarding safety issues.  Perhaps it is because I spent 10 years working in adult rehab, treating patients for problems that started decades before I met them.  I have seen what overuse and poor design has cost people.  By then it is often too late to do much more than compensation and adaptation.  I am committed to prevention with my pediatric clients.  The cost is too high not to say something and say it loud.

For more information and ideas about helping your child with hypermobility, read Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and Should Your Hypermobile Child Play Sports?

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Afraid to Toilet Train? Prepare Your Child… and Prepare Yourself

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I spend an extra 30 minutes at the end of a session this week helping a mom build her courage and confidence so that she felt ready to start toilet training soon.  Her child is over 3, has sensory and motor issues, but shows tons of signs for readiness:  dry diapers for increasingly long periods, tells adults when he needs to “go”, able to manage clothing, etc.  He also has no confidence in his abilities, rarely likes change or challenge, and is super-sensitive to altering routines and using new environments.  This isn’t going to be seamless.

It isn’t clear who is the more prepared individual, but I think it could be the child.

This mom read my favorite marketplace book on training “Oh Crap”, and she needs to re-read it with an eye to the many ways in which her child fits the picture of a child that could NEVER be fully ready to train.  This species is so averse to novelty and challenge that no treat or toy is a great enough reward.  Nothing is more frightening to them than failure, and you simply cannot miss the diaper.  It is familiar, fail-proof, and allows children to never have to monitor their body signals or stop watching Paw Patrol to go to the potty.  Ever.

This child is likely to be experiencing the normal sensations of fullness and pressure (as the bladder and rectum fill) as uncomfortable and a little scary.  This interoceptive input can be one that children are sensitive to in the same way that the find seams on clothes or lying down for a diaper change unpleasant.  He requires a lot of support to tolerate and process tactile input and vestibular input, so it isn’t exactly surprising that he would find interoceptive sensation difficult to handle.  Adding a new routine for dealing with elimination, placing it in a room he rarely uses (the bathroom) and being old enough to know that he could “fail” and old enough to absorb outside comments about being “dirty” is more than enough to make this harder than it should be.

My suggestions to this mom included:

  • Adding more vocabulary to her discussions about toilet training.  Speaking about the feelings of pressure and fullness, the actions of pushing the poop out gently, and cleaning/wiping with clear messaging that this is a learning experience that nobody does perfectly.  Hearing that his parents had “accidents” when they were little, and that every child will have accidents, well, this could really help both of them.
  • Dressing him lightly, or choosing to go naked or just underpants (I like two layers of training pants if they still fit his tiny heine!) so that there are fewer barriers to making it to the potty means she may need to shop for training garments.
  • Planning the environment if she is going to let him go naked.  All living events except sleeping need to happen in places where accidents can be cleaned up easily.  She isn’t averse to staining the carpet, but I assured her that her child knows not to spill things on that carpet.  He is too old not to interpret soiling it as a failure.  When she runs to clean it up, he will feel badly.  If she doesn’t have to rush and shows no stress, he will relax about the almost inevitable accident.  He NEEDS  the confidence to move forward.
  • Consider more media about toileting and the arc of learning.  Most children don’t like to talk about things that distress them.  But they LOVE to read about others who are going through the same things.  I suggested that she weave in some new books about characters who are learning to use the toilet, and add comments about their feelings as they learn.  This would include how excited and proud the character is.  Proud can be a new word in his vocabulary!

 

Training a child that has low tone?  I wrote an e-book for you!

The Practical Guide to Toilet Training Your Child With Low Muscle Tone is filled with preparation ideas, strategies to address the common issues of sensory processing limitations and the behavioral effects of low tone, and even includes a guide to building readiness instead of waiting for it to arrive!  You can find it on my website Tranquil Babies,  on Amazon  , and on a terrific site for occupational therapy materials, Your Therapy Source

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Sensory Stimulation is not Sensory Treatment

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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….

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Does Your Child Still Chew on Clothes or Toys?

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Babies love to munch on their toys.  They nibble at book bindings, chew the heck out of their loveys, and some little ones really love to chew their pacifiers.  As they grow, most children let go of this behavior.  Chewing and biting for sensory exploration and state modulation diminishes and a child’s behavior evolves into thinking, communicating, and smooth internal state regulation.

But some older kids slip their sleeve or shirt collar into their mouth whenever they can, and are left with a soggy mess by the end of the day.  They suck on their markers or the grocery store cart.  Their toys and pencils are ragged witnesses to the continuing use of oral stimulation, long past the first year or two of life.

Why do they do this?

Some kids are seeking to fill an oral cavity that is less stimulated due to low muscle tone, hypermobility and/or limited sensory discrimination.  Shoving a sleeve in there provides that sensory boost as muscles, skin and ligaments stretch.  Children that need more sensory input due to inactivity, boredom, physical limitations and illness use oral input as an always-available and independent option.  Other kids use biting and chewing to modulate their level of arousal (and open their eustachian tubes, BTW!).  While most OTs know about the modulation piece, the way biting and chewing impact hearing and even vestibular health isn’t so commonly considered.  Biting can stem nystagmus for some kids, and it can lessen dizziness or help a child move their eyes apart as they watch objects in the distance (divergence) for reading the board and for sports.  For kids that use biting well after the toddler biting phase should be over, evaluating any ocular (eye) or ENT issues can be helpful.

Exploring the level of stress in a child’s life outside the classroom or therapy clinic is another consideration.  Biting and chewing are calming proprioceptive inputs that a child can use when they are anxious or fearful, or just uncertain.  It may not be possible to impact the stress of divorce, moving to a new home, or adding a newborn to the family, but appreciating these situations as factors in behavior can improve how families, teachers and therapists respond.  Older children could be trying to modulate their level of arousal without causing trouble by running, jumping or yelling.  Chewing is less likely to be disruptive in a classroom setting.

What Can You Do Once a Chewing Habit is Established?

Once oral sensory seeking behavior takes hold, it isn’t easy to stop.  It can be very satisfying and accessible, particularly for young children.  Addressing the core cause or causes means taking things one step at a time.  Many children do well with a multi-sensory diet added to their daily activities.  More physical activity or more frequent activity breaks can help.  I find that more vestibular input in particular can be powerful.  Using whistles can be helpful when chosen well and supervised for safety and overall modulation.   Some children need to become more aware of their behaviors; older kids can use some of the “How Does Your Engine Run?” concepts to take responsibility for their behaviors and independently seek alternative sensory input.  Kids that learn mindfulness techniques can incorporate those into their program as well.

The use of chewing objects can help, but there are three concerns that have to be addressed:  hygiene, safety, and speech.  A child that sucks or chews on any object isn’t going to monitor its cleanliness, so make sure you use non-toxic soap that is carefully rinsed off.  A chewing necklace should never be worn while sleeping due to safety issues, nor can it be used when it could become snagged on branches or sports equipment.  And finally, having something in the mouth, whether it is a pacifier or a chewing toy, will minimize and alter speech if it isn’t removed for communication.  Never allow a child who is talking or learning to talk to devolve into head nods so they can keep chewing.

Looking for more information on sensory issues?  Read Sensory Sensitivity In Toddlers: Why Responding Differently to “Yucky!” Will Help Your Child and Weaning the Pacifier From An Older Child.

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Are Your Other Children Resentful of Your Special Needs Child?

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This is something that is hardly ever spoken of, but it happens in many, if not most families.  The good news is that it is normal, it doesn’t predict future behavior, and you can address it without sending everyone to a psychiatrist.

The time and energy demands of a special needs child aren’t always in proportion to a child’s delays.  Surgeries or therapy intensives can pull you away for weeks.  The little things, like therapy always being at the same time as someone’s soccer games, are actually harder for siblings over time.  Even sharing lap time can be tough for a toddler who was, until recently, able to climb into your arms anytime.

Remember, toddlers naturally see the world as theirs, and assume that they and their actions are a part of everything that happens to them, good or bad.  They will not be able to fully comprehend why their sibling may take a long time to be able to play with them.  Older children may perceive that it isn’t “nice” to complain about their perceived lack of parental attention, but they feel it.

What can you do?  I believe that quality time is the answer, but only part of the answer.  When you are planning, engaging in, and reminiscing about the quality time that you spent with your child, regardless of whether they are 18 months old or 18 years old, you approach it as if you were in a long-distance love affair.

If you were dating someone across the country, you would talk about the upcoming rendezvous with excitement, you would savor every short minute of it, and you would reconnect afterward, reminding your beloved of the wonderful time you had, and what you hope will happen the next time.

The twist that I learned from Dr. Harvey Karp’s wonderful book The Happiest Toddler on the Block is to put into words exactly how you FEEL about your child and the terrific plans (or event that just passed).  Saying “I am SO, SO, looking forward to reading our special book tonight!” with a smile can mean that a child will put up with your absence at that soccer game.  Reminding a child “Remember when we went out for ice cream alone, nobody else?  That was fun!” helps them handle the fact that they are bathing with the nanny or big sister while you bathe and dress your special needs child.  Even responding with sympathy:”I know…I am sad too that I can’t go with you to your playdate because I have to take Jonah to PT” and using a tone of voice, facial expression and body language that messages real regret; this will help your child handle their feelings without becoming aggressive or shamed for their feelings.

I think this works extremely well with your special needs child’s siblings.  Kids need to hear how happy you are to be with them, that you look forward and backward with pleasure.  They know on some level, even as toddlers, that they don’t get all your attention.  But they really want and need to hear that you love being with them as much as they love being with you.  It could be an ice cream run just with them.  A game of catch just with them.  Reading a new book together.  Almost anything will work, as long as you elaborate on your feelings as well as talking about the event itself.  Mentioning your excitement or good memories during a calm time works better than wedging the comments in between correcting actions and giving consequences.  A casual mention of your future plans can smooth out a lot of feathers!

Looking for more information on parenting when you have a special needs child?  Read How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child and Universal Design For Parents of Special Needs Kids: It’s Important for You Too! and also The Cube Chair: Your Special Needs Toddler’s New Favorite Seat!

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Sensitive Child? Be Careful How You Deliver Praise

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Sensitive kids need encouragement as much as the next child, but they can have a paradoxical reaction when you praise them.  What do I mean?  You compliment your child by saying “GREAT job!  I knew you could do it!”, and they react by becoming angry or even arguing with you.  They may even try to destroy what they had done.  This can include being mean to a sibling or pet, or breaking something that they created.

Why?  Weren’t you supposed to support them?  All the parenting books recommend giving children accurate and immediate feedback.  You could have done everything as suggested:  you were warm, you were specific about their success, and you used words that match their age and developmental stage.  You even avoided the pitfall of praising results and instead you praised effort.  It backfired on you.

What went so wrong?

Simply put, you didn’t expect that they would think that any future performance could be seen as a failure, and this burden was more than they could bear, or the sensory input overwhelmed them.  Or both.  This reaction is more common than you would think, and happens in very young children, as young  as two!  Some very sensitive kids cannot handle the physical intensity of some methods of praise.  Your change in vocal volume and even vocal pitch may send them into physiologic alarm mode.  The longer you go on, the more upset they become.  And they don’t have a good answer when you ask why they are so upset.  They are just as eager for true appreciation as any other child, but they know that they feel bad, not good.  You weren’t intending to create pressure on them.  Kids can place it on themselves.  These are often the kids that need things to go the way they expected, or to go perfectly or it isn’t acceptable.  They are very invested in being seen in a positive light.

What can you do differently?

If you think that your child is reacting this way, dial down your response and observe how your child takes it in.  Using a lower voice and shortening your response can help.  Making a general statement rather than elaborating might be easier to hear.  “Nice work” can be more acceptable than “You did an AMAZING job; I cannot wait to show everyone what you did!”  Dr. Karp’s “gossiping” technique, whether it is gossiping to a toy or to a person in the general vicinity might be more acceptable.  Waiting a few minutes, or even waiting until the next day to deliver praise can be helpful.  It sounds great to follow the strategies listed in the parenting blogs and in magazines, but if you have a sensitive child, you have already learned that things sometimes have to be altered to fit your child’s needs.  This is just another example!

Another suggestion is to put more effort into modeling how to handle slip-ups.  Kids need to know that we make mistakes and don’t always succeed.  We look so powerful and accomplished to young children.  We know that we have our limits and faults, but kids don’t always see it that way.  Explicitly tell your child when you make a mistake, and talk about your feelings and how you make yourself feel OK with not being perfect.  This can go a long way to helping a sensitive child handle praise.

Looking for more information on helping sensitive kids?  Read What Helps Sensitive Kids Handle Haircuts? and Holidays Hints For Sensitive Kids.  Sensitivity is common in gifted kids Sensitivity and Gifted Children: The Mind That Floods With Feeling and kids with sensory processing disorder Sensory Sensitivity In Toddlers: Why Responding Differently to “Yucky!” Will Help Your Child.

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Should You Install a Child-Sized Potty for Your Special Needs Child?

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Affordable accessibility and no institutional appearance!

I know that some of you don’t even realize that such a thing exists:  a toilet sized for preschoolers and kindergarteners!  Well, you won’t find it in Lowe’s or Home Depot on the showroom floor, but you can buy them online, and it is an option to consider.  Here are the reasons you might put one in your child’s main bathroom:

  1. You have the space already.  Some homes are large enough to allow each bedroom to have its own bathroom.   If you have the option, it might be worth it during renovations.  It shouldn’t add considerably to the overall cost, and it should not be that difficult to swap out when your child grows.  If you have a bathroom near the playroom, that might be another good location for this potty.  Most older kids and adults can make it to another half-bath on that floor, but it might be perfect for your younger child and his friends!
  2. Your child is terrified of the standard-height potty.  Some kids are unstable, some are afraid of heights, and some have such poor proprioception and/or visual skills that they really, really need their feet on the ground, not on a footstool.
  3. Your child was a preemie, and their growth pattern indicates that they will fit on this toilet comfortably for a while.  Some preemies catch up, and some stay on the petite size.  Those children will be able to use a preschool-right potty into early elementary school.  Even if your preemie is average in size, they may have issues such as vision or sensory sensitivity that will make this potty a great idea for a shorter time.

I am just beginning to build my materials to do in-home consultations as a CAPS, but I think that an underserved population are parents of special needs kids that would benefit from universal design and adaptive design.  This toilet would come under the category of adaptive design, and it is an easily affordable solution for some children.  Having more comfort on the toilet speeds up training for many kids.  It also decreases the aggravation of training and monitoring safety for parents.  I am very committed to helping the entire family have an easier time of things like toilet training.

Think about what your family’s needs and capabilities are, and if you are planning to remodel or build a new home, consider finding a CAPS professional in your area to help you make your home as welcoming for your special needs child as possible!  For more information, read How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child.

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