Category Archives: self-care skills

The Subtle Ways Chronic Medical Care Affects Infant and Toddler Development

 

hannah-tasker-333889-unsplashThe good news:  more and more extremely premature and medically complex babies are surviving.  The bad news: there is a cost to the extended and complex treatment that saves their lives and helps them to thrive.  This post is an effort to put out in the open what pediatric therapists know only too well goes on after the medical crisis (or crises) are over.   Only when you know what you are seeing can you change it.

This is not an exhaustive list; it is a list of the major complications of a complex medical course of treatment on behavior:

  1. Your child is likely aware that their coughing, crying, or other reactions will stop parents and even some medical professionals in their tracks.  I have had kids who didn’t get what they wanted learn to hold their breath until they turned blue.  If you have worked in medicine, you should know that if a child does this and faints, they will immediately begin breathing again.  It doesn’t scare me.  But it can terrify family members, teachers, and other caregivers.  They will stop whatever they were doing and may give in to any demand right away.  Many kids learn who will take the bait impressively fast.  It is very damaging to a child’s relationships and destroys their ability to handle frustration.
  2. Invasive treatments have been done while distracting your child and often without involving your child in any way.  This has taught your child not to attend to an adult’s actions or words in the same way a typically developing child will do naturally.  Since learning language and fine motor skills are highly dependent on observation, these skills are directly impacted by this consequence.  This pattern can be reversed, but it is highly resistant and has to be addressed directly.  Don’t think it will simply go away as your child recovers medically.  It doesn’t.  As soon as your child can be involved in self-care any way (holding a diaper, etc) you need to engage your chid and demonstrate the expectation that they respond and interact to the degree that they can manage.  All the time.
  3. Typical toddler attitudes are ignored because “He has been through so much already”  If your child is kicking you while you change his diaper ( a real question to me by a private duty nurse) then you react the same way you would if your child didn’t have a G-tube or a tracheostomy.  The answer is “NO; we don’t kick in this house”.  You don’t get into why, or what is bothering them right away.  The immediate answer is “no kicking”.  Not now, not ever.  Aggression isn’t unusual or abnormal, but it has to be addressed.  With understanding and as little anger as you can manage as your beloved child is aiming for your face with his foot.
  4. Children who are unable to speak to engage you or able to move around their home will come up with other methods to gain and hold your attention.  Some children throw things they don’t want and HOPE that you make it into a big deal.  Or they throw to gain attention when they should be using eye contact, vocalization or signing.  They wanted your attention, and they got it.  Without speaking, signing or any other appropriate method of communication.  This is not play, this is not healthy interaction.  This is atypical past 10-12 months, and should be dealt with by ignoring or removing the items, and teaching “all done” or “no” in whatever method the child can use.  And then teaching the correct methods of gaining attention and rewarding it immediately.  The biggest roadblock is that if one caregiver takes the “throwing” bait, the child will dig in and keep using that method.  Adults have to act as team managers, and if they fail, the behavior keeps on going.
  5. Children can request being carried when they don’t need the assistance, but they want the attention.  This can delay their advancement of mobility skills.  One of my clients has learned which adults will hold his hand even though he can walk unaided.  He likes the attention.  The clinic PT doesn’t know this is happening, even though the family brings him to therapy.  Like a game of telephone, each caregiver assumes that the child needs the help he is requesting.  He is not developing confidence in his own home, which should be the first place to feel safe and independent.  He depends on adults to feel safe.  Oops.

 

In many ways, my job as an OTR is to alter some of these behaviors to allow normal development to take place.  Long after those medical crises are terrible memories, the consequences of those days, weeks, months and sometimes years can have significant effects on learning and independence.

Looking for more ideas to help children grow and develop?  Read Need to Support A Child’s Independence? Offer to Help Them! and The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem.  Do you have issues with your child’s siblings?  Read Are Your Other Children Resentful of Your Special Needs Child?

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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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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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How Being Toilet Trained Changes Your Child’s Life

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Think your child doesn’t care that he is wearing pull-ups in pre-K?  Well, he might not…yet.  After all, he doesn’t know another life.  He has been using a diaper (because we know that pull-ups aren’t anything other than a diaper, right?) for elimination since his first day of life.  Wait until he is trained, and you may see the difference that being trained will make for him.

Children who have accomplished toilet training have made a significant step forward in independence.  They are the masters of their domain, to borrow from Seinfeld.  Not needing help for something so personal, they have a different attitude about body ownership and privacy.  This is important and personally meaningful.  We want children to have pride in their bodies and a sense that they own them.  Even though you would never harm your child, when you are involved in their “business”, you are taking some of that pure ownership away.  The sooner they have a sense that they can manage alone, or with only a bit of help for the hard bits, they build their sense of self.

When kids master a major life skill, they often are more willing to take on other skills such as writing and dressing.  They are interested in holding their spoon and fork the “grown-up” way.  They have entered the world of the older child, in their minds.  And adults aren’t immune.  We see potty trained kids differently too.  When they are able to take care of themselves in the bathroom, we start raising our expectations for them as well, and treat them as older children, not babies.  And they react to our change in perception as well.  Toilet training can lift everyone up!

The practical realities of life mean that being trained allows them to go to activities and even schools that they wouldn’t be able to attend.  Pools and camps have rules, and being fully engaged with their community means being out there and participating as much as possible.

A mom told me yesterday that her 5 year-old told her “I am so happy that I can use the potty!”  It took him a long time to get all the skills together to be fully trained, and he is off on a family cruise next week.  This will be the first time he can attend cruise camp with his older brother.  He has arrived!

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The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem

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Many different ways to use Dycem!

In adult rehab, occupational therapists are regularly providing patients who have incoordination, muscle weakness or joint instability with both skill-building activities and adaptive equipment such as Dycem.  In pediatrics, you see a predominance of skills training.  Adaptive equipment shows up primarily for the most globally and pervasively disabled children.  I think that should change. Why?  Because frustration is an impediment to learning, and adaptive equipment can be like training wheels; you can take them off as skills develop.  When kids aren’t constantly frustrated, they are excited to try harder and feel supported by adults, not aggravated.

 

What Dycem Can Do For Your Child

Dycem isn’t a new product, but you hardly ever see it suggested to kids with mild to moderate motor incoordination, low tone, sensory processing disorders, hypermobility, and dyspraxia.  We let these kids struggle as their cereal bowl spills and their crayons roll away from them.  Dycem matting is a great tool for these kids.  It is grippy on both sides, but it is easy to clean.  Place a terrific bowl or plate on it OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues, and it won’t tip over with gentle pressure, and not even if the surface has a slight incline.  It lasts a long time, and can be cut into any shape needed for a booster seat tray or under the base of a toy like a dollhouse or a toy garage.  Placing a piece of Dycem under your child while they are sitting on a tripp trap chair or a cube chair A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato ChairThe Cube Chair: Your Special Needs Toddler’s New Favorite Seat! will help them keep their pelvis stable while they eat and play.  The bright color contrasts with most objects, supporting kids with visual deficits and poor visual perceptual skills.  It catches their eye and their attention.  As you can see, Dycem has a lot to offer children and parents.

How To Use Dycem To Build Motor Skills

Will it prevent all spills or falls?  No.  But it will decrease the constant failures that cause children to give up and request your help, or cause them to refuse to continue trying.  Children are creating their self-image earlier than you realize, so helping them see themselves as competent is essential.  Will it teach kids not to use their non-dominant hand to stabilize objects?  Not if an adult uses it correctly.  Introducing Dycem at the appropriate stage in motor development and varying when and where it is used is the key.  Children need lots of different types of situations in order to develop bilateral control, and as long as they are given a wide variety of opportunities, offering them adaptive equipment during key activities isn’t going to slow them down.  It will show them that we are supporting them on their journey.  When kids are new to an activity or a skill and need repeated successes to keep trying, Dycem can help them persevere.  When children are moving to the next level of skill and see that they are struggling more, Dycem can support them until they master this new level.

The Cheap Hack:  Silicone Mats

I will often recommend the use of silicone baking mats instead of dycem.  These inexpensive mats often do the job at a lower cost, and can be easily replaced if lost at daycare or school.  Dycem is a specialty item that can be purchased online but not in most stores.  Silicone mats aren’t as grippy, but they are easily washed and dried.  Some families are averse to anything that looks like adaptive equipment, so I may introduce these mats first to build a parent’s confidence in my recommendations.

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Is Your Constipated Toddler Also Having Bladder Accidents? Here Are Three Possible Reasons Why

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Kids with chronic constipation are a challenge to train.  It can often appear that withholding is the issue, and to be certain, fear and pain are real issues.  But there are some physiological problems caused by constipation that contribute to bladder problems, and they aren’t always what your pediatrician is thinking about.

  1. The constant fullness of the colon can lead to bladder misplacement.  The bladder can be compressed and even folded, depending on exactly where the blockages exist.  This is not good for any organ, but it is especially a problem for a hollow organ that should be filling and emptying regularly.   The sensation of fullness with a misplaced bladder is therefore corrupted, so the child is not receiving correct input.  They may feel that they “have to go”, only to have nothing in their bladder, or very little.  They may fill up really fast and have to run to the toilet before they have an accident.  Too many accidents, and a child can beg for that pull-up so that they aren’t embarrassed or inconvenienced.  Even the little ones are subject to shame that isn’t from you as a parent, but in comparison to older kids or sibling comments.
  2. Chronic constipation stretches the pelvic floor, and therefore there is both less stability and less control.  The pelvic floor muscles help us to hold the urine into the bladder in time to get to the toilet, in conjunction with the sphincters.  Poor control and poor awareness go hand-in-hand.  There are physical therapists that specialize in pelvic floor rehab, but this isn’t easy to do with children that have limited language.  Not impossible, but not easy.  Letting the problem go until they are older means risking years of psychological and physical stress.
  3. Withholding due to pain or fear is a huge issue, and it can become automatic.  This means that solving the constipation issue may not immediately result in continence.  Using a wide range of approaches, including manual therapy, behavioral strategies, medications and diet control, and even core stability and sensory processing strategies, may be needed.

My final comment is that chronic constipation is nothing to ignore.  It needs to be addressed well and early.  It often doesn’t solve itself, and it may need more than a spoonful of Metamucil to clear up.  Get help and request consultations early rather than waiting to see how things “go”!

For more information about toilet training, see For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up and The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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Teens With Chronic Illness Or Disability Need A Good Guide: Read “Easy For You To Say”

bagas-vg-426755Being a tween or teen isn’t easy, but having a chronic physical illness or disability (not interchangeable) can make it extremely difficult.  Kids aren’t always great at asking for help or even answering questions, so this wonderfully useful book has done the groundwork for you.

Dr. Miriam Kaufman’s book Easy For You To Say is an easy-to read format of questions and answers that is accessible for teens to read and parents of teens will learn a tremendous amount as well.  She has a significant amount of experience with this subject, and has plenty of solid medical knowledge to back up her information.

As a physician, you will find that she includes a great deal of medical information, including medication lists related to teen concerns such as acne and sexual response and functioning.  These lists, of course, are dated the minute the book is published, but the general categories of drugs that have effects that concern teens is helpful as a starting point for discussions with a pediatrician or specialist.

This book isn’t just about the medical concerns that occur with physical illness and disability.  Dr. Kaufman covers the challenges of relationships of all kinds, and practical issues with school, work, and having fun as a teenager while dealing with significant issues.  This book doesn’t mince words but is unfailingly positive.  Kids (and parents of teens) really need that positivity while trying to launch into a life of more independence.  She is a strong proponent of self-advocacy that doesn’t become militant but is always life-affirming.  There is some discussion of higher education and career planning, which is so essential Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues.

This book has it’s limitations.  It doesn’t address cognitive disabilities or psychiatric disabilities like living with bipolar illnesses, nor does it speak about ASD or SPD.  These issues can co-occur in the same teen, and it is then that you might want to think about what an OT has to offer.  This author doesn’t even mention us as helpful professionals that do more than, if you can believe it, help kids look at career options.  Perhaps she missed the class on what “occupation” really references.  Oh well.

As an occupational therapist, I wish my profession had been mentioned as a greater resource for disabled teens, but perhaps I should not be that surprised that it is left out.  Most physicians aren’t aware of how OTs can meaningfully assist kids past the Early Intervention years to enhance their functioning and learn both better skills and work-arounds to accomplish what they would like to do in life.  For example, her book speaks in great detail about the complications of mobility and coordination limitations during sexual activity.  Since just about every teen is curious about this subject, an occupational therapist could help them adapt their environment, equipment and movements to make this part of ADLs a success on many fronts.  Dr. Kaufman has a lot of ideas, but the specifics for each teen are going to be different, and that is where OTs shine.

This book should be on the shelf of most pediatric physiatrists, and most OTs.  It is now on mine!  If your child is no longer a child, I recommend “Life Disrupted” by Laurie Edwards.  This book covers the situations that young adults in their 20’s really need to figure out.  Specifically, learning how to craft a career, develop relationships and become independent when you are dealing with a chronic illness.  None of it is easy, but the author is both supportive and realistic.  I think that helps more than platitudes and positivity without, as Dr. Phil might say, putting verbs in the sentences.

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