Monthly Archives: May 2019

The Subtle Ways Long Term Medical Care Affect 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.  The parents may be experiencing their own PTSD Can Your Pediatric Patient’s Parents Have PTSD? so be aware that their reactions may be coming from a place of untreated trauma as well.
  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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Does Your Special Needs Child Have a “Two-tude”? Its Not Just the Age; Its Frustration Minus Skills

 

patrick-fore-557736I spend a lot of my work week with toddlers, and they can be a challenge.  One minute sunny, the next screaming because their cookie broke.  Special needs toddlers can have a “tude as well, but many professionals sweep it under the rug.  They tell parents that this is normal, and that they should be grateful that their child is going through a completely normal stage of development.

Except that many parents who have already raised typically-developing kids KNOW that there is a difference with this child.  It could be the intensity of the ‘tude, or the frequency of the meltdowns, or the types of events that trigger the tantrums.  OR ALL OF THEM!  Parents know that this doesn’t feel the same, but they often shut up when they are told that it is so normal.  Perhaps their eyes and ears and memory isn’t correct.

They aren’t wrong.  Their perception that something is a bit different can be totally correct.  And the reason(s) are quite obvious to me.

Special needs kids come in an almost endless combination of needs.  Some are physical, some are communication needs, and some are cognitive or social skill needs.  Some are all of these.  Having challenges in moving, speaking, comprehending language and/or concepts or struggling to interact will create more frustration for every single day of a child’s life.  That’s the reality of disability.

The image of the placid and sweet special needs child, patiently waiting to be assisted and supported is just that: an image.  Most kids bump into frustrating barriers every day.  The toddler that has just learned to walk but can’t run, the toddler that is talking or signing but still isn’t understood by their older brother, the toddler that cannot handle a change in routines…it goes on and on.

Typical toddlers spend less time frustrated that they are unable to accomplish simple skills.  The typical 14 month-old that can’t tell you what he wants becomes the 18-month old that can say “cakker, pease” for “cracker please”.  A special needs child could be 4 years old and still struggling to explain that he wants another cracker.  That is a long time to be frustrated.  The typical 26 month-old that can’t run after their brother in the backyard becomes a runner at 30 months.  A special needs child may not run for years.  That is a long time to be left in the dust when everyone is running.  Is there any wonder that parents see more frustration, more tears, more stubbornness?

My saddest story of failed inclusion is when a family placed their special needs child in a toddler development group with mobile kids.  Even though this child had a personal aide, he still watched as his peers got up from the snack table and ran outside.  They left him with the aide, who then carried him outside so he could WATCH his peers climb and run.  He became distraught at home when he was left alone in a room.  A puddle of tears.  It was so sad to see.  No one had thought of the emotional cost of inclusion to this toddler, only the social and academic benefits.

What can be done?

I teach families the Happiest Toddler on the Block strategies as soon as they are appropriate.  Dr. Karp’s techniques build a child’s skills while enhancing interpersonal connections Teaching Children Emotional Regulation: Can Happiest Toddler on the Block Help Kids AND Adults?.  Yes, sometimes you have to provide consequences for aggression, but mostly it is about building frustration tolerance and emotional intelligence.  For everyone.  I use these techniques all day long.  I could never handle so many toddlers for so many years without them!

Looking for more information on special needs toddlers?  Read Need to Support A Child’s Independence? Offer to Help Them! and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.

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Need to Support A Child’s Independence? Offer to Help Them!

 

irina-blok-192240-unsplashI know; it sounds like I am being sarcastic.  That couldn’t be farther from the truth.  Instead of telling children to “Give it another try” or “I know you can do it”, offering help to a young child can have the paradoxical effect of eliciting more perseverance and attention.

It really isn’t all that complicated:  think of your own responses for a moment.  If you were trying to fill out your tax forms, and ran into difficulties, you might call an accountant for help.  If their response was “Just keep trying; I know you can figure it out!” you probably wouldn’t be excited to try again.  You might feel even more agitated.  I know what I would be thinking:”If I knew what to do, I wouldn’t have called you int he first place!”

If your accountant said “Let me take a look.  Oh, I underlined some of the important numbers.  You got stuck with line 32b, right?” you could see the issue in a new light, and be able to come to a solution without having to walk away or tear up the form.  Your accountant used their advanced knowledge to set you up for success.

We need to do the same thing for children.  Telling them we have faith in them, or insisting that they need to try again when they clearly don’t know how to alter their actions, is not kind or even very educational.  It leaves them feeling abandoned under stress.  Even if we know they can solve for X, they aren’t doing it now.

For the very youngest kids, I have a special solution.  You “wiggle it”.  Young children don’t know how we understand how to do so many things well.  When they get stuck opening containers or assembling objects, I offer to “wiggle it”.  By demonstrating that the container does indeed open, or that the bead will fit on the string, I am assuring them that they could be successful.  More importantly, I am demonstrating the correct grasp pattern and stabilization method.  And finally, I am rebooting their motor plan and their frustration level.  Just handing the object over to me reduces their agitation.  When children aren’t so frustrated, they can think and create better motor patterns.’

All this from a little “wiggling”.

To read more about building confidence and coordination, read For Kids With Sensory Issues and Low Tone, Add Resistance Instead of Hand-Over-Hand Assistance and Why Telling Your Child “It’s OK” Doesn’t Calm Him Down (And What To Do Instead)

When Writing Hurts: The Hypermobile Hand

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Many children resist doing their homework, but most kids say “Its so BORING!” not “My hand hurts too much”.  If a child is complaining of pain, and they don’t have a joint disease such as JRA, the first thought is hypermobility.  The good news is that there are a few fast fixes that can decrease or even eliminate hand pain.

It is rare that hypermobility in the hand is directly addressed at the preschool level unless it is generalized throughout the body or severely reduces pencil grasp.  Many children have atypical grasp patterns when they cannot achieve the required stability for a standard pencil grasp.  Children with mild instability and no other developmental issues may still be able to write legibly and even fast enough to complete assignments in the early grades.  It is when the volume of work increases or the joint stability decreases that therapists get a request for service.

Here are a few strategies that can support hypermobile kids to write with less pain:

  1. Use a tabletop easel.  These can be foldable or static.  They support not just the wrist and forearm, but also the shoulder and trunk.  The angle of an easel both supports correct wrist positioning and decreases strain on the wrist and hand.  Some easels come with clips that hold the paper, but they should be placed on an angle to mirror the natural arm position.  This will require more table space, so be aware that the size of the easel could be an issue.  Simple hack:  use a three-ring binder as an easel.
  2. Enlarge the width of the pencil shaft.  My favorite pencils for grades 1+ (see photo above) have a standard #2 lead, but a wider shaft. Joint protection principles tell us that avoiding a closed joint position should lead to less strain on joints and supporting ligament structures.  You could use some of the adaptive pens available, but I find kids reject these as looking strange.  Of course, if you enlarge the shaft oo much you will find that it is more awkward, not less.  Think of those novelty pencils you buy in gift stores on vacation.  Cute but useless.  Nobody really writes with anything that thick.  Match the child’s hand size to the pencil.
  3. Increase the texture of the pencil shaft for easier grip, less pain, and more endurance.   Everyone has seen the rubbery grips you slip onto a pencil.  You can slide 3-4 onto the entire shaft, or add some tape to create a non-slip surface.  I have been adding kineseotape or Dycem to handles this year, with good results.  You are battling grasp stability, but also fatigue.  A hand that is tired is a hand that experiences more pain.  Adding texture reduces the amount of force needed for proprioceptive registration (a fancy way of saying that kids need to squeeze to fully feel what is in their hand).  Reducing force reduces pain and fatigue.
  4. Teach pacing.  Kids think that the faster they write, the faster they will be out of pain.  Breaking up the work can have better results, but it isn’t natural for children to pace themselves.  In fact, I have never seen a young child do so.  You have to teach this to kids who likely will have joint instability throughout their school years.  A schedule, a timer, organizing assignments and breaking them down into heavy writing choices and light writing choices all help.
  5. Splinting can be a real option.  Not a heavy plastic or metal splint (usually).  A neoprene splint can be a lightweight supportive choice.  These splints are comfortable and washable.  These are affordable without insurance for most families, and your OT can help you decide if this is a worthwhile pursuit.  They are durable but easily lost by younger children, so not all families send one to school.  But the support is real, and kids that have been told for years to “fix your fingers” can feel relieved that they can now focus on writing and composing on the paper.

For more information on hypermobility, read The Hypermobile Hand: More Than A Strength Problem and For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

Looking for more assistance with hypermobility?  My new e-book is coming out this summer, and it will address the issues of the early years (0-5).  The series will continue with school age kids and teens.  But you don’t have to wait; visit my website tranquil babies and request a consultation to discuss your child’s treatment plan and make a better plan that works for everyone…today!