Tag Archives: children

The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

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My first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, was a wonderful experience to write and share.  The number of daily hits on one of my most popular blog posts  Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children helped me figure out what my next e-book topic should be.

Hypermobility is a symptom that affects almost every aspect of a family’s life.  Unlike autism or cerebral palsy, online resources for parents are so limited and generic that it was obvious that what was needed was solid practical information using everyday language.  Being empowered starts with knowledge and confidence.

The result?  My new e-book:  The JointSmart Child:  Living and Thriving With Hypermobility.  Volume One:  The Early Years.

What makes this book unique?

  • This manual explains how and why joint instability creates challenges in the simplest tasks of everyday life.
  • The sensory and behavioral consequences of hypermobility aren’t ignored; they are fully examined, and strategies to manage them are discussed in detail.
  • Busy parents can quickly spot the chapter that answers their questions by reading the short summaries at the beginning and end of each chapter.
  • This book emphasizes practical solutions over theories and medical jargon.
  • Parents learn how to create greater safety at home and in the community.
  • The appendices are forms that parents can use to improve communication with babysitters, family, teachers and doctors.

Who should read this book?

  1. Parents of hypermobile children ages 0-6, or children functioning in this developmental range.
  2. Therapists looking for new ideas for treatment or home programs.
  3. New therapists, or therapists who are entering pediatrics from another area of practice.
  4. Special educators, and educators that have hypermobile children mainstreamed into their classroom.

Looking for a preview?  Here is a sample from Chapter Three:  Positioning and Seating:

Some Basic Principles of Positioning:

Therapists learn the basics of positioning in school, and take advanced certification courses to be able to evaluate and prescribe equipment for their clients.  Parents can learn the basics too, and I feel strongly that it is essential to impart at least some of this information to every caregiver I meet.  A child’s therapists can help parents learn to use the equipment they have and help them select new equipment for their home.  The following principle are the easiest and most important principles of positioning for parents to learn:

  • The simplest rule I teach is “If it looks bad, it probably IS bad.”  Even without knowing the principles of positioning, or knowing what to do to fix things, parents can see that their child looks awkward or unsteady.  Once they recognize that their child isn’t in a stable or aligned position, they can try to improve the situation.  If they don’t know what to do, they can ask their child’s therapist for their professional advice.
  • The visual target is to achieve symmetrical alignment: a position in which a straight line is drawn through the center of a child”s face, down thorough the center of their chest and through the center of their pelvis.  Another visual target is to see that the natural curves of the spine (based on age) are supported.  Children will move out of alignment of course, but they should start form this symmetrical position.  Good movements occurs around this centered position.
  • Good positioning allows a child a balance of support and mobility.  Adults need to provide enough support, but also want to allow as much independent movement as possible.
  • The beginning of positioning is to achieve a stable pelvis.  Without a stable pelvis, stability at the feet, shoulders and head will be more difficult to achieve.  This can be accomplished by a combination of a waist or seatbelt, a cushion, and placing a child’s feet flat on a stable surface.
  • Anticipate the effects of activity and fatigue on positioning.  A child’s posture will shift as they move around in a chair, and this will make it harder for them to maintain a stable position.
  • Once a child is positioned as well as possible, monitor and adjust their position as needed.  Children aren’t crockpots; it isn’t possible to “set it and forget it.”  A child that is leaning too far to the side or too far forward, or whose hips have slid forward toward the front of the seat, isn’t necessarily tired.  They may simple need repositioning.
  • Equipment needs can change over time, even if a child is in a therapeutic seating system.  Children row physically and develop new skills that create new positioning needs.  If a child is unable to achieve a reasonable level of postural stability, they may need adjustments or new equipment.  This isn’t a failure; positioning hypermobile children is a fluid experience.

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years is now available on Amazon.com

And now a click-through and printable download is available on Your Therapy Source!  

For the week of 10/26/19, it is on sale, and when bought as a bundle with The Practical Guide to Toilet Training Your Child With Low Muscle Tone, it is a great deal and a complete resource for the early years!

Already bought the book?  Please share your comments and suggestions for the next two books!  Volume Two will address the challenges of raising the school-aged child, and Volume Three focuses on the tween, teen, and young adult with hypermobility!

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Hypermobility Or Low Tone? Three Solutions to Mealtime Problems

 

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Many young hypermobile kids, with and without low muscle tone, struggle at mealtimes. Even after they have received skilled feeding therapy and can chew and swallow safely, they may continue to slide off their chair, spill food on the table (and on their body!) and refuse to use utensils.

It doesn’t have to be such a challenge.  In my new e-book coming out this year, I will address mealtime struggles.  But before the book is out there, I want to share three general solutions that can make self-feeding a lot easier for everyone:

  1. Teach self-feeding skills early and with optimism.  Even the youngest child can be taught that their hands must be near the bottle or cup, even when an adult is doing most of the work of holding it.  Allowing your infant to look around, play with your hair, etc. is telling them “This isn’t something you need to pay attention to.  This is my job, not yours.”  If your child has developmental delays for any reason, then I can assure you that they need to be more involved, not less.  It is going to take more effort for them to learn feeding skills, and they need your help to become interested and involved.  Right now.  That doesn’t mean you expect too much from them.  It means that you expect them to be part of the experience.  With a lot of positivity and good training from your OT or SLP, you will feel confident that you are asking for the right amount of involvement. Read Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child and Teach Utensil Grasp and Control…Without the Food! for some good strategies to get things going.
  2. Use excellent positioning.  Your child needs a balance of stability and mobility.  Too much restriction means not enough movement for reach and grasp.  Too much movement would be like eating a steak while sitting in the back seat of your car doing 90 mph.  This may mean that they need a special booster seat, but more likely it means that they need to be sitting better in whatever seat they are in.  Read Kids With Low Muscle Tone Can Sit For Dinner: A Multi-Course Strategy for more ideas on this subject.  Chairs with footplates are a big fave with therapists, but only if a child has enough stability to sit in one without sliding about and can actively use their lower legs and hips for stabilization.  Again, ask your therapist so that you know that you have the right seat for the right stage of development.
  3. Use good tableware and utensils.  If your child is well trained and well supported, but their plates are sliding and their cups and utensils slide out of their hands, you still have a problem.  Picking out the best table tools is important and can be easier than you think.  Items that increase surface texture and fill the child’s grasping hand well are easiest to hold.  Read The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem and OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues for some good sources.  Getting branded tableware can be appealing to young children, and even picking out their favorite color will improve their cooperation.  Finally, using these tools for food preparation can be very motivating.  Children over 18 months of age can get excited about tearing lettuce leaves and pouring cereal from a small plastic pitcher.  Be creative and have fun!

 

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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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Teach Your Child To Catch and Throw a Gertie Ball

 

71rwmnHGrHL._SL1500_These balls aren’t new, but they don’t get the recognition that they should.  The ability to catch a ball is a developmental milestone.  For kids with low muscle tone, sensory processing disorder (SPD) or ASD, it can be a difficult goal to achieve.  The Gertie ball is often the easiest for them to handle.  Here’s why:

  1. It is lightweight.  An inflatable ball is often easier to lift and catch.  The heavier plastic balls can be too heavy and create surprisingly substantial fatigue after a few tries.
  2. Gertie balls are textured.  Some have the original leathery touch, and some have raised bumps.  Nothing irritating, but all varieties provided helpful tactile input that supports grasp.  It is much easier to hold onto a ball that isn’t super-smooth.
  3. It can be under-inflated, making it slower to roll to and away from a young child.  Balls that roll away too fast are frustrating to children with slow motor or visual processing.  Balls that roll to quickly toward a child don’t give kids enough time to coordinate visual and motor responses.
  4. They have less impact when accidentally hitting a child or an object.  Kids get scared when a hard ball hits them.  And special needs kids often throw off the mark, making it more likely to hit something or someone else.  Keep things safer with a Gertie ball.

The biggest downside for Gertie balls is that they have a stem as a stopper, and curious older kids can remove it.  If you think that your child will be able to remove the stem, creating a choking hazard, only allow supervised playtime.

Looking for more information about sports and gross motor play?  Check out Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility and Should Your Hypermobile Child Play Sports?.  You could also take a look at What’s Really Missing When Kids Don’t Cross Midline?.

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Address A Child’s Defiance Without Crushing Their Spirit

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Kids that defy adult instructions, even instructions that are ultimately for their benefit, often get begged or threatened into compliance.  Pleading with your child to pick up their mess, or threatening your child that those toys on the floor will be given to a charity shop isn’t always going to work.

Why? Probably because your child is waiting you out.  Children are wise observers of what works and what doesn’t, so they know you will eventually clean things up and they are fully aware that toys never disappear after a threat.

If you are tired of pleading and threatening, I have a strategy that could make you less aggravated and even ultimately boost your child’s self-esteem.  It works best with children that have at least a 30-month cognitive and language level.  This means that if you have an older developmentally delayed child that is unable to comprehend a request with a reward attached (“If you give me the shoe, I will get your milk”) then you should try a less complex strategy until they can understand this concept.

The idea is simple:  you make a request and if no response is elicited, you explain that they have a choice.  Not complying will result in a consequence they can see.  After the consequence is imposed, you offer the child another chance to make things right by following a slightly different direction or offering a “re-do”.  There is no “1-2-3” counting, because if you are certain that your child has understood your initial request and the explanation of the consequence, those were already the “one” and the two” of the countdown.  Your execution of the consequence is the “three”.  Good enough for me!

The trickiest parts of this strategy are the maintenance of a warm tone while your beloved child is defying you, and your quick thinking to identify a later task that allows them to save face while complying with your second request.  Do not think I haven’t had to act warm and friendly when inviting a difficult child to give participation another try.  I remind myself that I am the adult in the situation, and my job is to model calmness and teach skills, not get the upper hand on a 4 year-old.

I have also made up some pointless tasks such as rearranging boxes on a shelf, just to have an easy and successful task to offer them after the first consequence is delivered.  The younger the child, the less they will realize that Job #2 was only a chance for them to know that I am not rejecting them in any way.   I could say it, but actions speak louder than words.

Here is what this strategy looks like with a young child:

Adult:  “Please pick up all the cars, and then we can go have our yummy lunch.”

Child:   Looks at you, shakes her head and runs to the fridge. 

Adult:  ” Here is your choice:  pick up your cars and put them in the bin, or they will sit in their bin on top of the fridge until after dinner.”  Adult points to the fridge and/or taps the top to clarify what that means.

Child:   Gets a spoon from a drawer and stands by the fridge, no acknowledgment of your  directions.

Adult:  Uses The Happiest Toddler Kind Ignoring strategy and turns away from the child and waits next to the car pile for about 15 seconds for a positive response.  If the child doesn’t return, the adult puts the cars into the bin without more discussion, and places the bin on top of the fridge.

Child:  Cries, recognizing that a consequence has been delivered.

Adult:  Uses a disappointed but calm tone :  “I am sad too, because now we have to wait to play cars.” Adult’s body language and tone brightens. “Would you like to try listening again?  Please give me the blocks and I will stack them.”  Adult begins to stack very slowly to allow the child to consider her choice, and warmly welcomes the child’s help.

Child:   Begins to hand blocks to the adult.

Adult:  “You did a great job helping me!  Thank you!  Let’s go have our lunch!”

This can go south with strong-willed children, tired children and even some hungry children. I don’t recommend letting kids get super-tired or starving and then setting them up to lose.   Some kids are feeling great, but they draw a line in the sand and decide that they aren’t budging.  They won’t back down.  I express my disappointment in the outcome (no car play) but not in the child.  I don’t tell them I am disappointed in their behavior, because for a young child, they may not always be able to distinguish themselves from their behavior.  They will always be able to see the result: no cars.

I keep calm and impose consequences unless things go from defiance to aggression.  Then I consider a time-out strategy.  Aggression should never be ignored, because that is as good as approving of aggression.  In this age of zero-tolerance in schools, no one is doing any favors to a child by inadvertently teaching them that aggressive behavior is inconsequential.  They will find out soon enough that other people feel very differently about it.

Young kids will defy you.  I guarantee it.  Responding to defiance with limit setting doesn’t have to damage them or your connection with them.   Addressing defiance in this way can build a more positive relationship while making it very clear that there are consequences to not listening to you.

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Is Your Hypermobile Child JointSmart?

Sometimes it must seem that OTs and PTs are the ultimate buzz killers. “Don’t do gymnastics; it could damage your knees” and “I don’t recommend those shoes. Not enough support”. Just like the financial planner that tells you to sell the boat and save more for a rainy day, we therapists can sound like we are trying to crush dreams and scare families.

Nothing could be further from the truth! Our greatest wish is to see all children live their lives with joy, not pain and restriction. Hypermobile children that grow up understanding their body’s unique issues and know how to live with hypermobility are “joint smart” kids. The kids who force their bodies to do things that cause injury or insist on doing things they simply cannot accomplish face two kinds of pain; physical pain, and a feeling that they are failing for reasons they cannot fathom.

Pain at a Young Age?
Very young children with hypermobility don’t usually see OTs and PTs for pain, unless they have JRA or MD. The thing that sends them to therapy initially is their lack of stability. Some impressively hypermobile kids won’t have pain until they are in middle age. Pain (at any age) usually results from damage to the ligaments, tendons and occasionally the joints themselves. When the supporting tissues of a joint are too loose, a joint can dislocate or sublux (partial dislocation). This is often both painful and way too frequent for hypermobile kids. Strains and sprains are very common, and they happen from seemingly innocuous events. Other tissues may bruise easily as well, creating more pain. Disorders such as Ehlers Danlos syndrome can affect skin and vessel integrity as well as joint tissue, so it is not uncommon to see bruising “for no reason” or larger bruises than you would expect from daily activity.

Becoming JointSmart Starts With Parents
So…does your child even understand that they are hypermobile? If they are under 8, almost certainly not. Do they know that they have issues with being unstable? Probably. They may have been labeled “clumsy” or “wobbly”, even weak. Labels are easy to give and hard to avoid. I suggest that parents reframe these labels and try to take the negative sting out of them. Pointing out that people come in an amazing variety of shapes and abilities is helpful, but the most important thing a parent can do is to understand the mechanics, the treatment and how to move and live with hypermobility. Then parents can frame their child’s issues as challenges that can be dealt with, not deficits that have cursed them. How a parent responds to a child’s struggles and complaints is key, absolutely key.

The first step is teaching yourself about hypermobility and believing that options exist for your child. Ask your therapists any questions you have, even the ones you are afraid to ask, and make sure that your therapist has a positive, life-affirming perspective. Most of us do, but if you are at all anxious or worried, it really helps to hear about what can be done, not just what activities and choices are off the table. If you blame yourself for your child’s hypermobility, get support for yourself so that your child doesn’t feel that they are burdening you. They don’t need that kind of baggage on this journey.

Even when we are optimistic and creative as therapists, it doesn’t mean that we won’t tell you our specific concerns about gymnastics and Crocs for children with hypermobility. We will. It would be unprofessional not to. But we want you and your child to develop the ability to understand your options, including the benefits and the drawbacks of those options, and give you the freedom to make conscious choices.

Now that is being smart!