Tag Archives: occupational therapy

Should Hypermobile Kids Use Backpacks?

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It is back-to-school season here in the US.  One of the items on many parent’s shopping lists is a new backpack.  But for kids with low muscle tone or hypermobility, backpacks can be more than a way to carry books and water bottles.  They can be a source of pain, headaches, even numbness in hands and fingers.  The important question isn’t how to lighten the load of a heavy backpack.  It is whether these kids should be using them at all.

The standard recommendations from occupational therapists and orthopedists regarding backpacks is simple:  lighten the load, use both straps (select wide straps), and make sure the heaviest items are placed close to the body.  All good suggestions.  But if a child already has pain or weakness around the spine and shoulder joints, less stability and endurance, and less ability to judge posture and force, then the picture changes.  Using a backpack may be a significant physical risk, no matter how well designed or used.

Here are some suggestions that further minimize injury but can be acceptable to older kids who may be sensitive to being perceived as different:

  • Request a set of the heaviest books for home use.  This can be part of an IEP or a 504 plan, or the school may be willing to do so without anything formal on paper.
  • Select the smallest size backpack possible.  Stores like Land’s End and L.L. Bean here in the US are great sources for a variety of backpack sizes.
  •  Have your child use their backpack only for lighter items.  Pick the smallest water bottles and travel sizes of anything they need.  Think “weekend in Paris on a shoestring” not “trekking the Himalayas”.  At least they have a backpack like the other kids.
  • Teach your child to carry their pack in their arms, close to their chest, instead of wearing it.  I know, that sounds weird.  But if it is small, this is the smartest way to carry anything while reducing strain on backs and necks.  And they still have a backpack like the other kids.  A long shot, but some kids can be reminded of how awful neck and back pain really is, and how not being able to sleep or play sports is worse than carrying that pack in their arms.
  • Considering a rolling case?  Not so fast.  The twisting of the back and the use of one arm to drag a rolling case may be worse than using a backpack.  Then there is the lifting and lugging up non-ADA stairs.  Out of the frying pan……

Looking for more information about hypermobility, low tone and back-to-school planning?  Check out Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility? and Great Mechanical Pencils Can Improve Your Child’s Handwriting Skills.  Before you wonder if all that fidgeting and leaning over the desk is a behavior problem, read Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.  There are pencil grips that can really help kids with a weak grasp, so check out The Pencil Grip That Strengthens Your Child’s Fingers As They Write.

 

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Parents With Disabilities Deserve Real Support, Not Pity or Praise

 

 

dawid-sobolewski-285650Parenting is hard.  Everyone that has children or works with them knows that this is true.  Parenting when you have a disability is harder by far.  Like parenting… squared.  But instead of real support, many disabled people who become parents or are thinking of becoming parents face a lot of reactions from the non-disabled.  It usually arrives in one of two packages.  First, the more positive but less helpful responses.

People see disabled parents diapering a child with one hand or with both feet, or navigating the playground with a cane and remark on how amazing it all is.  They are either pitied for their struggle or praised for their bravery.  If you have a disability, what you could really use is to be seen as an equal.  And maybe the chance to share how to get your child to wait for more than a nanosecond for juice.  Real support and real camaraderie, the kind that other parents give and get on the playground.

Of course, there is another packaged form. These are those difficult responses that can and do happen.  Parents with disabilities may be treated like criminals (how dare you subject a child to your problems?) or idiots (“You will never be able to handle the challenges”).  I suppose pity and random praise could be better than these responses, but how about another reaction?  Support.

Sadly, one of the groups that should be actively supporting disabled parents often drops the ball.  Parenting issues aren’t always on the radar of doctors and therapists.  In fact, the act that gets you into the business of parenting may not even be fully acknowledged by professionals.  Yes, that one.  Accepting that disabled people are sexual and often (or mostly) capable of having children is so rarely mentioned in training and treatment protocols that it is a true crime.  When people with disabilities do have children, receiving equitable medical care and respectful treatment as parents isn’t a given.  Don’t believe me?  Think about how many accessible GYN tables you have ever seen, or how people with disabilities might struggle to attend the soccer game to cheer their child on.  Simple things that most of us take for granted.

I think that occupational therapists have much to offer parents with disabilities.  We are known for being the MacGyvers of rehab.  We love to solve real-life problems and use our wide range of skills to help clients achieve their goals.  Supporting people with disabilities to be the best parents they can be could be as simple as teaching a parent an easier way to hold or carry their child.  OTs are rarely consulted for this, but helping clients identify the positions, adaptations and adjustments needed to make that baby in the first place is actually in the OT skill set.  All discussed with respect and sensitivity, not pity.

OT support could be as complicated as redesigning a kitchen for safe and easy meal preparation.  Feeding your child is a wonderful way to participate as a parent.  Or as subtle as identifying how visual and auditory stimuli in the home set off sensory-based anxiety and agitation in a parent.  Being as calm as you can be is important when you are raising children.  A few sessions with a good occupational therapist can result in less stress, less pain, more skill and more confidence for all involved.

Occupational therapy isn’t always thought of as an essential service for adults with disabilities after the initial injury (think spinal cord injury rehab) or for people with more common issues such as fibromyalgia or back pain.  Perhaps that could change.  Parenting is hard.  It is harder when you don’t get the support you need.

 

Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health

As the OT on a treatment team, I am the ADL (Activities of Daily Living) go-to person.   Why then, do so few parents ask me what ideas I have about ADLs, especially dental care?  Probably because OT as a profession has developed this reputation as either focused on handwriting or sensory processing.  Maximizing overall health and building skills by improving ADLs is often pushed to the side.  Not today.

People with connective tissue disorders have a greater chance of cavities and more serious dental problems.   Knowing what to do for your child and why it is important helps parents make changes in behavior with confidence and clarity.

Here are my suggestions to support a child that has been diagnosed or is suspected of having Ehlers-Danlos hypermobility or any connective tissue disorder:

  1. Teach good dental hygiene habits early.  Why?  Habits, especially early habits, seem to be harder to dislodge as we age.  Good self-care habits can and should last a lifetime.  Automatically brushing and flossing gently twice a day is cheap and easy.  Make it routine, not optional.  I know how this can become a fight for young children.  This is one of those things that is worth standing your ground on and making it fun (or at least easy) for children to do.  Brush together, use brushes and pastes with their favorite characters, pair it with something good like music or right before bedtime stories, but don’t think that dental care isn’t important.
  2. Research on people with typical connective tissue suggests dental care reduces whole-body inflammation.  Inflammation seems to be a huge issue for people with connective tissue problems, and no one needs increased inflammation to add to the challenges they have already.  Enough said.
  3. Tools matter.  Use the softest toothbrushes you can find, and the least abrasive toothpaste that does the job.  Tooth enamel is also made from the same stuff and skin and bone, and so are gums.  Treat them well.  Water-powered picks and battery-operated brushes may be too rough, so if you want to try them, observe the results and be prepared to back off it becomes clear that your child’s tissues can’t handle the stress.  Toothpaste that is appealing will be welcomed.  Taste and even the graphics/characters on the tube could make the difference.  My favorite strategy is to give your child a choice of two.  Not a choice to brush or not.
  4. Think carefully about acidic foods.  Lemonades, orange juice, energy drinks, and those citrus-flavored gummies all deposit acids on teeth that are also mixed with natural or added sugars.  Those sugars become sticky on teeth, giving them more time to irritate gums and soften enamel.  Easy hack?  Drink citrus/acidic drinks with a straw.  Goes to the back of the mouth and down the hatch.  At the very least, drink water after eating or drinking acidic foods to rinse things out.
  5. Baby teeth count.   Because your young child hasn’t lost even one baby tooth, you may think this doesn’t apply to you.  Those permanent teeth are in there, in bud form.  Children can develop cavities in baby teeth as well as permanent teeth.  Gum irritation is no different for young children, and they are less likely to be able to tell you what they are feeling.  Sometimes the only sign of a cavity in a young child is a change in eating habits.  This can be interpreted as pickiness instead of a dental problem.
  6. Consider sealants and fluoride   I know…some people are nervous about the composition of sealants and even fluoride, which has been in the public water system here in the US for a long time.  I would never criticize a parent who opted out of either.  It is a personal decision.  But be aware that they don’t increase tissue irritation, and they protect tender enamel, tooth roots and the surrounding gums.  At least have an open discussion with your pediatric dentist about the pros and cons.  I am mentioning sealants here specifically because some parents aren’t aware that this treatment option can reduce cavity formation and gum deterioration.

Looking for more information about ADLs and hypermobility?  Take a look at Easy Ways to Prevent Skin Injuries and Irritations for Kids With Connective Tissue Disorders and Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child and Low Muscle Tone and Dressing: Easy Solutions to Teach Independence.

Taping The Paper To The Table For Your Child? Stop!

Many young children between 2 and 5, especially children with low muscle tone or postural instability, will struggle with bilateral control.  In preschool, one way to notice this is to see the paper sliding around the table while a child colors.  The common response of teachers (and parents) is to tape the paper down.  Oops!  This  eliminates any demand for both hands to work together.  Bilateral control only develops if it is needed and practiced.

The better approach, the one that makes the brain work and builds a child’s skills, is to make it even more slippery while making the activity more fun.

Why?  This child,’s brain, as described, needs more information about what is going wrong with the activity.  You can use heavier paper, stickers in a book that need accurate placement, or fun glittery markers.  Really, anything that makes a child care more about placing marks accurately.   I select the smoothest table surface available.  Glass coffee tables are a fave at home.  The alternate choice is a bumpy surface, something that will be slightly uneven and make the paper move more with each stroke.

I have some older kids that really struggle but can use a visual cue.  I make a mark on their paper and tell them to put their “helper hand” – the one not coloring- on this mark.  This is sometimes helpful, but it is limiting the extent that this hand is providing optimal postural support.

Yup, support.  The hand that holds the paper is also performing another function.  It is stabilizing the child’s body so that the dominant hand can execute a skilled movement.

So….no more tape on that paper, OK?

Hypermobile Toddlers: It’s What Not To Do That Matters Most

 

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Do you pick up your toddler and feel that shoulder or those wrist bones moving a lot under your touch?  Does your child do a “downward dog” and her elbows look like they are bending backward?  Does it seem that his ankles are rolling over toward the floor when he stands up?  That is hypermobility, or excessive joint movement.

Barring direct injury to a joint, ligament laxity and/or low muscle tone are the usual culprits that create hypermobility.  This can be noticed in one joint, a few, or in many joints throughout the body.  While some excessive flexibility is quite normal for kids, other children are very, very flexible.  This isn’t usually painful for the youngest children, and may never create pain for your child at any point in their lifetime.  That doesn’t mean that you should ignore it.  Hypermobility rarely goes away, even though it often decreases a bit with age in some children.  It can be managed effectively with good OT and PT treatment.   And what you avoid doing at this early stage can prevent accidental joint injury and teach good habits that last a lifetime.

  1. Avoid over-stretching joints, and I mean all of them.  This means that you pick a child up with your hands on their ribcage and under their hips, not by their arms or wrists.  Instruct your babysitter and your daycare providers, demonstrating clearly to illustrate the moves you’d prefer them to use. Don’t just tell them over the phone or in a text.  Your child’s perception of pain is not always accurate when joint sensory aren’t stimulated (how many times have they smacked into something hard and not cried at all?) so you will always want to use a lift that produces the least amount of force on the most vulnerable joints.  Yes, ribs can be dislocated too, but not nearly as easily as shoulders, elbows or wrists.  For all but the most vulnerable children, simply changing to this lift instead of pulling on a limb is a safe bet.
  2. Actively discourage sitting, lying or leaning on joints that bend backward.  This includes “W” sitting.   I have lost count of the number of toddlers I see who lean on the BACK  of their hands in sitting or lying on their stomach.  This is too much stretch for those ligaments.  Don’t sit idly by.  Teach them how to position their joints.  If they ask why, explaining that it will cause a “booboo” inside their wrist or arm should be enough.  If they persist, think of another position all together.  Sitting on a little bench instead of the floor, perhaps?
  3. Monitor and respect fatigue.  Once the muscles surrounding a loose joint have fatigued and don’t support it, that joint is more vulnerable to injury.  Ask your child to change her position or her activity before she is completely exhausted.  This doesn’t necessarily mean stopping the fun, just altering it.  But sometimes it does mean a full-on break.  If she balks, sweeten the deal and offer something desirable while you explain that her knees or her wrists need to take a rest.  They are tired.  They may not want to rest either, but it is their rest time.  Toddlers can relate.

Although we as therapists will be big players in your child’s development, parents are and always will be the single greatest force in shaping a child’s behavior and outlook.  It is possible to raise a hypermobile child that is active, happy, and aware of their body in a nonjudgmental way.    It starts with parents understanding these simple concepts and acting on them in daily activities.

Wondering about your child’s speech and feeding development?  Take a look at Can Hypermobility Cause Speech Problems? to learn more about the effects of hypermobility on communication and oral motor skills.

Looking for information on toilet training your child with Ehlers Danlos, generalized ligament laxity, or low muscle tone?  My e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, gives you detailed strategies for success, not philosophy or blanket statements.  I include readiness checklists, discuss issues that derail training such as constipation, and explain the sensory, motor, and social/emotional components of training children that struggle to gain the awareness and stability needed to get the job done.  You will start making progress right away!

My book is available on my website tranquil babies, at Amazon, and at yourtherapysource.com.

Infants With Sensory Sensitivity: When Your Fussy Baby Takes Over Your Life

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Parents are often the first to suspect that their infant’s constant and intense complaints are more than just fussiness.  Sometimes pediatricians pick up on a pattern of edginess that cannot be explained by all the usual suspects:  teething, food sensitivity, temperament.  Having a baby who complains bitterly about the most common events, such as diaper changes and nursing, can take over a parent’s life and make them question their sanity.

Judging by the research literature, you would think that sensory sensitivity only happens to toddlers or preschoolers!  Those 4 year-olds who refuse to wear shirts with long sleeves and cannot handle a car ride without vomiting often started out as super-fussy babies.  Their parents may have tried the lactation consultant, the pediatrician, maybe even the neurologist, in a frantic search for help.  They could have used an OT.

I have treated babies as young as 6 months-old that displayed clear signs of sensory sensitivity after prolonged periods of peri-natal NICU stays or procedures.  Why would a few months in the NICU make a baby sensory-averse to diaper changes and being held?  Well, look at it from the perspective of an immature nervous system.  They got more stimulation than they could handle, and their brains responded by interpreting everything as a potentially invasive experience.  Turns out, a good percentage of children who require intensive and ongoing medical procedures to save their lives don’t recall the experience, but their body does. Ask psychiatrists doing fMRIs, or functional MRI’s, what they see in adult trauma victims.  Parts of the brain that encode emotion and memory will light up like Christmas trees when faced with innocuous stimuli.  Oops.

Progressive NICU’s are making changes, but those nurses have no choice to perform multiple and invasive procedures and do them in a very stimulating environment.  They are working hard at a very difficult task; saving the lives of really tiny, really sick babies.

Is a NICU stay the only way to become a sensory-averse infant?  Not at all.  It seems some infants are just wired to be more sensitive, and some babies need only a little bit of extra excitement to become sensitive.  I treated an infant under 6 months of age that struggled to nurse.  She had the oral motor skills to suck, the swallowing skills to avoid choking, but she disliked the feel of her mother’s skin touching her face.  She nursed until she wasn’t starving, then refused any more.  Her mother felt rejected and not in love with her little girl any more.  The baby wasn’t growing and was constantly agitated.  We worked hard in therapy to help this baby, but until we realized what the problem was, every time her mom tried to get her to nurse more, she was repeating the cycle of aversion and agitation.

My approach for my youngest sensory-averse clients combines everything I know from Happiest Baby on the Block and all my training in sensory processing theory and practice as a pediatric occupational therapist.  The first step is convincing parents that they didn’t cause this behavior, and then convincing them that there is treatment that works.  Combining calming sensory input, environmental adaptations, and skill building in these little babies can make a huge difference in their lives and their family’s experience.  If your baby is incredible fussy and no one can find a good reason, pursue pediatric occupational therapy with an experienced therapist.  It could calm things down more quickly than you think!

Child Writing Too Lightly on Paper? It Might Not Be Hand Strength Holding Him Back

If your child barely makes a mark when he scribbles or writes, most adults assume that grasp is an issue. Today’s post suggests that something else could be the real reason for those faint lines.

Limitations in postural and bilateral control contribute far more to lack of pressure when writing  than most parents and teachers realize.  For every child in occupational therapy that is struggling to achieve good grasp, I see three whose poor sitting posture and inability to get a stable midline orientation are the real issues.

Think about it for a minute:  if you sat with your non-dominant (not the writing hand) hand off to the side and you shifted your body weight backward in your chair, how would you be able to use sufficient force on a pencil or a crayon?  Try this right now.  Really.  You would have to focus on pressing harder while you write and hope your paper doesn’t slip around.  That would require your awareness and some assessment of your performance.  Children don’t do “awareness and assessment” very well.  That ability comes from frontal lobe functions that aren’t fully developed in young children.  But they can learn where to place their “helper hand”, and that sitting straight and shifting forward is the correct way to sit when you scribble or write.

If a child has sensory processing or neuromuscular issues such as cerebral palsy, Ehlers-Danlos Syndrome or Down Syndrome, achieving adequate postural stability may take some effort on the part of the therapists and the teacher.  Well worth it, in my experience.  There are easy hacks that help kids; good equipment and good seating that won’t cost a fortune or inconvenience the class.  Every child can learn that posture is important for writing.  But the adults have to learn it first.  Kids take their cues from what adults appear to value, and if they figure out that they are allowed to slump or lean, they almost always will.

I am doing a lecture on pre-writing next week, and I intend to make this point, even though the emphasis of my lecture is on the use of fun drawing activities to prepare children to write and read.  Why?  Because it may be the only time these preschool teachers hear from a pediatric occupational therapist this year, and I want to make a difference.  Understanding the importance of postural control in pre-writing and handwriting could help struggling kids, and make decent writers into stars!