Category Archives: parenting

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

 

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

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

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

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

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

Looking for more information to help your child with hypermobility?  Take look at The Hypermobile Hand: More Than A Strength ProblemShould Your Hypermobile Child Play Sports? and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.  My e-books on pediatric hypermobility are coming out soon!  Check back here at BabyBytes for updates.

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

 

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

Here are a few things to think about:

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

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Boost Pincer Grasp With Tiny Containers

These days I am getting pretty…lazy.  My go-to items are designed so that children automatically  improve their grasp or their posture without my intervention.  I am  always searching for easy carryover strategies to share with parents too.  As with most things in life, easy is almost always better than complicated.

My recent fave piece of equipment to develop pincer grasp in toddlers and preschoolers is something you can pick up in your grocery store, but you are gonna use it quite differently from the manufacturer’s marketing plan….

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Remember these?

Enter the tiny party cup, AKA the disposable shot glass!  Yes, the one you used when you played “quarters” in school.  The very same.  These little cups work really well to teach toddlers to drink from an open cup, but they are also terrific containers to promote pincer grasp in young children.  Drop a few small snacks into these little cups and discourage them from dumping their snack onto the table instead of reaching inside with their fingers.

No matter how small your child’s fingers are, they will automatically attempt a tripod or pincer grasp to retrieve their treat.  You should’t have to say much of anything, but it never hurts to demonstrate how easy it is.  Make sure you eat your snack once you take it out of your cup.  After all, grownups deserve snacks too!

These little containers are much sturdier than paper cups.  This means that they can survive the grasp of a toddler who cannot grade their force well.  The cylindrical shape, with a slightly smaller base than top, naturally demands a refined grasp.  The cups have a bit of texture around the middle of the cup (at least mine do)  which gives some helpful tactile input to assist the non-dominant hand to maintain control during use.  They are top-shelf dishwasher safe and hand-washable, in case you feel strongly that disposables aren’t part of your scene.

Has your child mastered pincer grasp?  These little cups are fun to use in water and sand tables as well.  Mastery of pouring and scooping develops strong wrist and forearm control for utensil use and pre-writing with crayons.

For more ideas on developing grasp, take a look at Want Pincer Grasp Before Her First Birthday? Bet You’ll Be Surprised At What Moves (Hint) Build Hand Control! and Develop Pincer Grasp With Ziploc Bags.

 

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

 

 

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

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

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

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

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

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

You may add a firm foam wedge to activate trunk muscles if they can use one and still maintain their posture in this chair, or use the Stokke-style chair A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair or the Rifton chair until your child has developed enough control to take advantage of a cube chair.

Looking for more information on positioning and play?  Check out Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and How To Pick The Best Potty Seat For Toilet Training A Child With Low Tone.  I am in the process of writing a series of practical guides for parents of children with hypermobility, so keep checking back on my site for the launch this summer!!

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

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

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

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

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

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

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

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

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

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

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

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Help Your Child Develop Self-Regulation With Happiest Toddler On The Block

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Children start learning self-regulation early.  Most kids eventually become reasonably skilled at it, given some help from loving adults.  The problem is they don’t learn it quickly.  Self-regulation takes a long time to become established in the slowly-developing brain of a young child.  While you are scooping up the puddle of Jell-O that used to be your toddler before she dropped her ice cream cone, think about how you can use this moment to build her ability to come back to a calm state:

  1.   Reflect her emotions without denying them or taking them on.  After all, you know that it isn’t the end of the world.  But at that moment, she can’t see it.  She is sad and maybe even angry.  Use the Fast Food Rule Use The Fast Food Rule For Better Attunement With Your Child to state what happened and how you think she feels.  Remember to use lots of gestures and alter your vocal tone to convey empathy.  Don’t be placid; after all, she needs to know that you get how unhappy this has made her.  Kids tune into your expressions much more than your words at this age.  You may think you should be soothingly quiet, but she is thinking ” You don’t see my pain!!”
  2. Make sure she knows that you care about what happened, and use this moment to identify what she is feeling.  Even if you intend to get her another cone, allowed her to be upset for a very brief period, and let her know that we call that feeling “sad”.  Kids depend on us to explain what happened to the dinosaurs, how to eat with a fork, and also how to identify and manage emotions.  Take that moment to explain that there is a name for what she is feeling, and that it is normal and understandable, even if you intend to fix it with another ice cream.
  3. Ask her if she wants another ice cream cone, but not too soon.  Sometimes children aren’t ready for our solutions, even if they do want them, and presenting one too early gives a message that we never intended:  I can’t handle your pain, you can’t either, and I need to fix it right away.  Look for that shift in body language, eye contact or verbal connection that tells you she is starting to pull herself together before you jump in with a solution.

 

If you find yourself more upset than your child, their pain ripping through you, take a moment to look inside and see what experiences in your past are contributing to this feeling.  You may have been taught the same lesson early in your own childhood.  If you received the message that pain is unbearable and should be avoided at all costs, you are not alone.  Well, I am going to tell you that an important part of your life, and a part of your child’s life is all about learning to feel feelings without fear and come back to a good place after a difficult experience.

Bad things happen to us all, and the most important lesson you can teach your child at this moment is that she can handle this feeling and come through it.  With your support, and with the support of other people who love her, she will get through the loss of her ice cream and other losses in life as well.

And it can start with how to handle the loss of an ice cream cone….!

 

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Use The Fast Food Rule For Better Attunement With Your Child

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What’s attunement?  The physical and emotional connection that a healthy parent makes with their upset child that brings them both back into a calm and balanced state.  Why is it important?  Because without attunement you don’t have healthy attachment, and attachment is the foundation for a healthy emotional and interpersonal life.  Attunement and attachment are some of the biggest issues in psychology today.  Everyone is talking about it, but once those early years are over, it takes a lot of therapy to repair rifts in this foundation.  So reinforce your emotional connection with your toddler, and know that the effort you make today will help them recognize healthy relationships for the rest of their life.

How does The Fast Food Rule help parents develop attunement?  By reflecting back the child’s perceived complaint with enough gesture, facial expression and vocal intensity to register in the mind of a child, your child will feel that you “get” them, just as they are, regardless of whether you agree that a broken cookie is the end of the world.  Knowing that a parent understand where you are coming from is essential.  For more details, read Stop The Whining With The Fast Food Rule.

Again, later in life, realizing that a partner isn’t “getting them” is important when deciding whether to develop or stay in a relationship.  From there, your child will be able to consciously decide to communicate more effectively, invest more time and effort in the relationship, or move on to another person who can connect more successfully with them.

Does this mean that you give in to every howl from a young child?  Of course not.  Even toddlers know that they won’t get everything they demand.  They may be unhappy to hear that they can’t have cookies for dinner, but they don’t actually think they will be having them for dinner.  What matters is that they know that you understand them, understand their feelings, and aren’t rushing to squash their anger, sadness or frustration.

Once you see those little shoulders drop, hear the scream become a wail or a whine, and get more eye contact, you will have been given the green light to offer a solution.  Wait for it.  And look for that moment when the two of you are calm and moving forward together.  That, my friends, it attunement at work.

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