I don’t have a good photo to illustrate this point, but if you or your child are hypermobile, you know exactly what I am talking about. It can be any part of the body; shoulders that allow an arm to fold under the body and the child lies on top of the arm, crawling on the backs of the hands instead of the palms, standing on the sides of the feet, not the soles.
The mom of a child I currently treat told me that this topic is frequently appearing on her online parent’s group. Mostly innocent questions of “Does your child do this too?” and responses like “At least she is finally moving on her own” When I met her child, she was rolling her head backward to such a degree that it was clearly a risk to her cervical (neck) spine. We gradually decreased, and have almost eliminated, this behavior. This child is now using it to get attention when she is frustrated, not to explore movement or propel herself around the room.
Because of their extreme flexibility and the additional gradual stretching effects of these positions, most children will not register or report pain in these positions. Those of us with typical levels of flexibility can’t quite imagine that they aren’t in pain. Unfortunately, because of their decreased proprioception Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and decreased sense of stability, many hypermobile kids will intentionally get into these awkward postures as they seek more sensory input. It can actually feel good to them to feel something!
The fact that your child isn’t in pain at the moment doesn’t mean that there isn’t damage occurring as you watch them contort their bodies, but the underlying inflammation and injury may only be perceived later, and sometimes not for years. Possibly not until tissue is seriously damaged, or a joint structure is injured. Nobody wants that to happen. If you think that there is a chance that your child is more than just loose-limbed, ask your therapist to read Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue? and get their opinion on whether to pursue more evaluations. Some causes of hypermobility have effects on other parts of the body. An informed parent is the best defense.
Here is what you can do about all those awkward postures:
Discuss this behavior with your OT or PT, or with both of them. If they haven’t seen a particular behavior, take a photo or video on your phone.
Your professional team should be able to explain the risks, and help you come up with a plan. For the child I mentioned above, we placed her on a cushion in a position where she could not initiate this extreme cervical hyperextension. Then we used Dr. Harvey Karp’s “kind ignoring” strategy. We turned away from her for a few seconds, and as soon as she stopped fussing, we offered a smile and a fun activity. After a few tries, she got the message and the fussing was only seconds. And it happens very infrequently now, not multiple times per day.
Inform everyone that cares for your child about your plan to respond to these behaviors, to ensure consistency. Even nonverbal children learn routines and read body language. Just one adult who ignores the behavior will make getting rid of a behavior much, much harder.
Find out as much as you can about safe positioning and movement. Your therapists are experts in this area. Their ideas may not be complicated, and they will have practical suggestions for you. I will admit that not all therapists will approach you on this subject. You may have to initiate this discussion and request their help. There are posts on this blog that could help you start a conversation. Read Three Ways To Reduce W-Sitting (And Why It Matters) and Kids With Low Muscle Tone: The Hidden Problems With Strollers . Educate yourself so that you know how to respond when your child develops a new movement pattern that creates a new risk. Kids are creative, but proactive parents can respond effectively!!
My readers know that I wrote an e-book on potty training kids with low tone ( The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived! ) but I have to admit, I learn a lot from other authors. Jamie Glowacki has written a terrific book that speaks clearly and directly to parents who aren’t sure they are up to the challenge of toilet training. Oh Crap Potty Training is a funny title, but it is filled with useful ideas that help parents understand their toddler better and understand training needs so they can tackle this major life skill with humor and love. I have to admit, I am really happy that she suggests parents of kids with developmental issues ask their OT for advice. So few parents actually do!
Here are a few of her concepts that illustrate why I like her book so much:
She gets the situation toddlers find themselves in: using the potty is a total change in a comforting daily routine. Jamie points out that since birth, your child has only known elimination into a diaper. The older they are when you start training, the longer they have been using diapers. WE are excited to move them on, but they can be afraid to sit, afraid to fail, and afraid of the certainty of the diaper always being there. You can’t NOT get it in the diaper! She also gets the power struggle that can be more enticing to an emerging personality after about 30 months of age. Just saying, she gets it.
Potty training success opens meaningful doors for kids, diapers keep them back. Some great activities and some wonderful schools demand continence to attend. By the time your child is around 3, they can feel inferior if they aren’t trained, but not be able to tell you. They express it with anxiety or anger. If you interpret it as not being ready, you aren’t helping them.
Some kids will NEVER be ready on their own. I know I am going to get some pushback on this one, and she already says she gets hate mail for saying it. But there is a small subset of kids who will need your firm and loving direction to get started. Waiting for readiness isn’t who they are. If you are the parent of one of these kids, you know she’s right. Your kid hasn’t been ready for any transition or change. You have had to help them and then they were fine. But this is who they are, and instead of waiting until the school makes you train her or your in-laws say something critical to your child, it might be OK to make things happen rather than waiting.
You must believe that you are doing the right thing by training your child. They can smell your uncertainty, and it will sink your ship. She really sold me on her book with this one. As a pediatric therapist, I know that my confidence is key when instructing parents in treatment techniques for a home program. If I don’t know that I am recommending the right strategy, I know my doubt will show and nothing will go right.
For children with either low muscle tone or spasticity, toilet training can be a real challenge. If it isn’t clothing management or making it to the potty on time, they can have a hard time perceiving that NOW is the time to start heading to the toilet.
Why? Often, their interoception isn’t terrific. What is interoception? Think of it like proprioception, but internal. It’s the ability to identify and interpret sensory information coming from organs and internal tissues. Among them, the pressure of a full bladder or a full colon. If you can’t feel and interpret sensation correctly, your only clue that you need the potty is when your pants are soiled. Uh-oh. A child with muscle tone issues is almost certainly going to have sensory issues. Tone will affect the amount and quality of sensory feedback from their body.
What can you do to help kids? The simplest, and the fastest solution I have found, is to tell them to stand up and see if they have changed their mind. Why? Because in a sitting position, the force of a full bladder or colon on the abdominal wall and the pelvic floor isn’t as intense. Gravity and intra-abdominal pressure increase those sensations in standing. More sensation can lead to more awareness.
So the next time your child tells you they don’t have to “go”, ask them to stand up and reconsider their opinion. Now, if they are trying to watch a show or play a game, you aren’t going to get very far. So make sure that they don’t have any competition for their attention!
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:
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.
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.
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.
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.
If your special needs child isn’t experiencing a medical reason for incontinence (infection, blockage, neurological impairment) then you might be facing one of these three common roadblocks to total training success:
Your child has limited or incomplete interoceptive awareness. What is interoception? It is the ability to sense and interpret internal cues. The distention of the bladder, the fullness of the colon, etc are all internal cues that should send them to the potty. Unfortunately, just as poor proprioception can hinder a child’s ability to move smoothly, poor interception can result in potty accidents, among other things. Working with them to become more aware of those feelings can include monitoring their intake and elimination routines. You will know when they should have more sensory input, and can educate them about what that means. Listen to how they describe internal feelings. Kids don’t always know the right words, so use their words or give them a new vocabulary to help them communicate.
Your child’s clothing is difficult to manage, or their dressing skills aren’t up to the task. They run out of time before nature calls. Tops that are hard to roll up, pants that have tricky fasteners, even fabrics that are hard to grasp and manipulate. All of these can make it a few seconds too long once they get into the bathroom. If you are not in there with them, you may have to ask them to do a “dry run” so you can see what is going on and what you can change to make undressing faster. In my e-book, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, I teach parents the best ways to teach dressing skills and the easiest clothing choices for training and beyond. If you have ever had to “go” while in a formal gown or a holiday costume, you know how clothing choices can make it a huge challenge to using the toilet!
Your child is too far from the bathroom when they get the “urge”. Children with mobility problems or planning problems may not think that they are in trouble right away. They might be able to get to the bathroom in time in their own home. When they are out in public or at school, the distance they have to cover can be significant, and barriers such as stairs or elevators can be an issue. Even kids playing outside in their own yards might not be able to come inside in time. If you can’t alter where they are, teach them to use the potty before they go outside or when they are near the bathroom, instead of waiting. Taking the time to empty a half-full bladder is better than an accident.
Parents anxiously wait for their special needs infants to sit up, crawl and walk. That last skill can take extra months or years. Everyone, and I mean everyone, uses walking as a benchmark for maturity and independence.
They shouldn’t. A child with poor safety awareness isn’t safer when they acquire mobility skills. Sometimes they are much less safe. Yes, they may be able to move without your help, but they may need to be more highly monitored and given more assistance to learn how to be safe. They are exploring their environment and their new skills that took them a long time to develop. They have been wanting to climb on the couch for months. Now they can. Getting down the “safe” way isn’t as important to them, and maybe not as easy as sliding or rolling off. Oops.
What can parents do to help their child be a safer (notice I didn’t say “safe”) ambulator, crawler, cruiser, etc?
Talk about safety before they are independent. Will they understand what it means? Probably not, but your tone and your insistence on how movement is done says that you value safety and you want them to do the same. Kids learn from all of our actions. Make this one familiar to them by being very obvious and explicit.
Take your physical therapist seriously when she or he teaches you how to work on core strength and balance skills. Yes, I still maintain that safety is more than a sensory-motor skill, but having the best possible sensory and motor skills is important. Having good safety awareness and safety behaviors without these skills will make a child more vulnerable to falls and injuries.
The same goes for sensory processing activities. If your child cannot perceive the movement of falling, the tactile and proprioceptive change as they crawl or step on something, or tolerate multiple sensory inputs at once, they are much less safe, even with good strength and coordination. Really.
Know your child’s cognitive and social/emotional skills. Impulsive children are less safe overall. Children that cannot process your instructions or recall them without you are less safe. Children that enjoy defying you more than they want to avoid falling are less safe. If you know any of these things, you can gauge safety and react more appropriately. You will be less frustrated and more helpful to them.
Reward safe execution and do not reward unsafe behavior. My favorite way to avoid punishment but also to send my safety message home? Not providing eye contact or much at all in the way of conversation as I stop unsafe actions, and either removing a child from an unsafe situation or assisting them in using the safe method to execute their move. They get no satisfaction from seeing me react strongly, and they get the message that I am not accepting anything but their best safety skills as they move.
Stop a child that is moving in an unsafe way, and see if they can recall and initiate the safe choice before assisting. You don’t want to teach them that only you will make them safe and they need someone to be safe out there. They have to learn how to assess, react and respond, and all children can build their skills. Some need more teaching, and some need more motivation to begin to take responsibility for their safety. Give them both.
Carrying and holding kids is such a natural thing to do. But when your child has hypermobility due to low muscle tone, joint issues or a connective tissue disorder, howyou accomplish these simple tasks makes a difference. Your actions can do more than get them from one position or location to another: they can build a child’s skills, or they can increase the risk of damage by creating excessive flexibility or even accidentally injure a child’s joints.
How could something so simple be both a problem as well as an opportunity? Because hypermobility creates two issues that have to be addressed: Less strength and stability at vulnerable joints, and less sensory feedback regarding pain and position sense in your child. The ligaments, tendons, muscles and joint capsule at every hypermobile joint are more likely to be damaged when excessive force is placed on them.
Knowing how much force is too much isn’t easy without some instruction from a skilled therapist. Depending on your child to react quickly and accurately to accidental stretch or pressure by crying or pulling away isn’t a good idea. Their excessive flexibility reduces firing of receptors deep within all of these tissues in response to excessive force. You may have looked at your child’s shoulders or ankles and think “That looks uncomfortable. Why isn’t she fussing?” This is the reason. It means that you will have to be altering your actions to reduce the risk of harm.
As I mentioned earlier, this is also an opportunity. It is an opportunity to teach your child about safe movement and positioning, right from the start. Even the youngest child will pick up on your emphasis on alignment, control and safety. They are always listening and learning from you every day, so incorporate effective movement into your handling and help your child build awareness and independence today!
Here are some strategies for you and your child:
Always spread the force of your grasp over their body, and place your hands on the most stable locations, not the most flexible. Lift a child through their trunk, not by holding their arms. If they cannot steady their head, support it while you lift. If you feel those little bones in their wrists and ankles moving under your grasp, support those joints instead of pulling on them. Not sure how to do this correctly? Ask your therapist for some instruction.
Do not depend on a child’s comfort level to tell you how far a joint should stretch. Think about typical joint movement instead. If their hips spread very wide when you place them on your hip, think about holding them facing forward, with their knees in line with their hips, not pressed together.
Give them time to move with you. Those over-stretched muscles are at a mechanical disadvantage for contraction. This means that when you tell a child to sit up, you have to give them time to do so before you scoop them up. They aren’t being defiant or lazy (I have not, in fact, ever met a lazy baby!). This is a neuromuscular issue.
Discourage unsafe movements. Some children find that overstretching their joints gives them more sensory feedback. It feels good to them. This is not OK. You will not be able to stop them every time, but they will eventually learn that their is a right way and a wrong way to move. Knowing why isn’t necessary. Yet. Teach them to respect joint movement and use things like graded joint compression and vibration (your occupational therapist should be able to help you with this) to give them the sensory feedback they want.