“Teaching without Knowing” Continued...

I am late getting this posted!  My beloved Jeep lost its engine two hours after I accepted a new position with a 27 mile commute.  Add another $4000 to an already over taxed budget.  But one way and another I have been able to juggle the new job and no vehicle.   It isn’t a crisis just another bump in the road to be navigated.  That I believe is one of hard earned gifts of being a parent of a medically fragile child.  We learn to navigate a lot of obstacles!

To continue the discussion of “Teaching without Knowing”

The news from medical personal about our children is not easy to hear.  For many it is peppered

with limitations, anticipated delays, and other things a loved one would not like to hear.  It is important to know those predictions.  Just keep in mind they are just that-- predictions.

In my experience they are as useful as a weather forecast.  The weather report for the next few days is clear and a bit warmer (yeah!).  However, it is not uncommon for the weather to turn out differently than was forecast.  In this case I hope turns out to be warmer.   In my world it is not uncommon for a snow storm to move in a different direction than the weather people anticipated and leave a nasty pile of snow instead of flurries or a few flakes instead of the few inches. 

Like weather forecasters, professionals assessing children with significant special needs can only make general predictions. It is an educated guess.  How a child’s medical and cognitive situation actually unfolds is largely unknown.  It is greatly influenced by the nature of the child’s personality, the body’s capacity to adapt, the stimulation received, and a whole lot of brain function that is a mystery to everyone.

Development capacity, physical capacity, and physiological issues remain cloudy.  So what are parents and caregivers to do? 

For me the answer is clear!  .  Assume life, development and intelligence!

Every child (regardless of diagnose or prognosis) needs every opportunity to become the best that they can be.  That comes only with stimulation, interaction, and movement. 

Especially during the first few years of life, we do not know what children with significant special needs are taking in.  We do know that the brain is developing and creating pathways that will be used throughout life.  Therefore providing rich and varied stimulation to encourage physical and cognitive development is important to your child now and in the future.

Some children have physical issue that making the tired threshold very low.  That’s okay.  It is part of who your child is.  So provide activities in short time frames throughout the day and evening.  In between make sure there is music or stories on tape and things that are fun to look at.   

Ideas to stimulate your child:

1.   Provide the same stimulation and interactions you would with any other child.  As an infant talk, make faces, tickle, and move legs and arms. As the child grows add reading stories, encouraging movements, simple games like peek-a-boo.  A little older add the alphabet, colors and numbers. 

2.   Always assume intelligence.  I cannot emphasis this enough.   Children tend to live up to what is expected of them. 

3.  Encourage and teach other people to do the same.   When you catch someone having a great interaction with your child, thank them and explain how important such interaction is.   More difficult is the need to step up when someone talks baby talk or says negative things to your child.   Unfortunately some of the worst offenders I encountered were school staff , bus drivers, and nurses.   If the behavior doesn’t change, take more formal routes to correct the situation. 

I know!  Conflict and confrontation are unpleasant.  And I confess I would rather avoid it.  However, people are teaching your child what he or she is capable of.  His or Her future depends on what they learn about themselves.

4.  Keep stimulation age appropriate.  I visited my daughter’s classroom of 4^th through 6^th graders in an Indiana school.  The day opened with a story called “Puppy Goes to School” written for preschoolers.  I could see the boredom and was not surprised when misbehavior that followed.    I confess Maddie was one of the problem kids adding loud yawns and hollering at another child.  I did address Maddie’s behavior with her but was at a loss to explain to her why it was important to her to pay attention to a story she might have liked three or four years earlier.  At home Maddie was fully engaged in reading The Witch, the Lion, and Wardrobe with the nurses and me.  

 

In general, children want to please their adults (and older peers).  The following interaction guides will encourage strong growth and development of both the cognitive and physical realms.

                           A.  Have expectations

                           B.  Offer praise and encouragement

                           C.  Allow child to succeed or fail as independently as possible

                           D.  Celebrate and move on

 

Every child is different!  What things have you found to encourage and stimulate your child?  Are there things that you wish you knew but don’t?  Please don’t hesitate to comment.  All of us reading this blog are dealing with these issues one way or another.  Perhaps we can learn from each other.

 

Teaching without Knowing

Did you know that every day you are teaching?  You ARE!  And for most of us, without a teaching certificate.  Your child is learning from you all the time.

Maybe the most important thing we teach our children, we do without even knowing we are doing it.  While we are focused on helping our children learn to eat, sleep, sit, crawl, walk, talk and all the other things that go into life, we are teaching them who they are.

Teaching a child who he or she is, is critically important!  Our interactions, words, and actions communicate to our child how we feel, what we believe, and what we expect.  A child subconsciously internalizes all of that which becomes what he or she believes about themselves.

In the case of children who have significant special needs, those messages maybe even more important.    Our interactions are teaching a child what it means to be “handicapped.”  Contrary to the connotative meaning of the word, it does not need to mean “helpless.”

I once had a few disturbing conversation with a teacher in an Indiana school Maddie was attending.  The class was playing a very simple (way too simple for Maddie’s level) game of color BINGO.  Maddie won.  Suddenly the verbal children in the room began clamoring to pick a prize for Maddie. 

Taken back, I said to the teacher, “Maddie is very capable of picking her own prize.”

The response left me speechless, “I know but the other kids like helping her.”

So what has been instilled in each child in the room is that Maddie is helpless.  Her capacity, opinions and desires come second to the other kids’ (and too often adults’) need to help.

What would have helped Maddie more would be to expect, encourage, and even demand that Maddie do absolutely everything she was capable of.  Only as a last resort would something be done for her. 

This approach communicates to Maddie that she is capable and able.  It instills an understanding that she can do things and other people respect that she is capable.

It is too easy to surround a child with significant special needs with the message, "You are helpless.  You need to be taken care of.  You are incapable."  Those messages do not help anyone.

I think it is critical to children who are medically fragile or have significant special needs to be nurtured to be doers with some control over their world.  And that depends largely on how their caregivers interact with them. 

Next weeks blog post will be "5 Ways to Teach Your Child Who He or She Is"

What do you think the words and interactions with your child are teaching him or her?

First Can-Do Spirit Artist

Six year old Julissa Maben

I am proud to introduce Can-Do Artist Julissa Rana Maben.  Julissa is a six year old student at JP Lord School in Omaha, Nebraska.  She is lively, curious, and determined.  I was captivated from the moment she started teaching me to clap…well, tried to teach.  I am a bit rhythmically challenged. 

Julissa created an art master piece to help me with a new book which will be available later this spring.  The book is entitled Can-Do Spirit Art and contains 10 projects that children with physical challenges can do. 

If you would be interested in your child being part of this project, please let me know.  The book will include your child as a Can-Do Artist complete with his or her story.  In return for participation in the project, you will receive digital copies of the photos and a copy of the eBook when it is published. 

I regret that I have to limit this to children living within a 25 radius of Omaha, Nebraska. 

 

 

 

                                                      Julissa: The Glitter Queen!

5 Things to Stimulate Your Child's Brain

Image courtesy of Salvatore Vuono at FreeDigitalPhotos.net

It has been a long known fact that the care, interaction, and stimulation in the first few years of life of a human being impacts intelligence, emotional well-being, and social skills.   I firmly believe that is even more important to children with significant special needs.

Infants and toddlers are a lot of work.  Our kids need our attention to eat, sleep, bathe, dress, medications, and treatments.  The truth is that a good number are dependent on someone else to initiate any interaction.

It is so easy to set our children in front of the TV so that we can get a few things done.  What is not to like about TV; it has bright pictures and constant sound?  If it entertains our kids, isn’t that stimulation enough?  Without any research to back up my view, I think TV is of very little value to children with significant special needs.  It requires nothing of the child or anyone else.  I think it is an invitation to enter a stupor state.

You maybe thinking, "Great another thing I need to do for my child's well-being! Does the list ever end?" 

Don't panic.  I am not suggesting anything that requires a lot of time or expense.  It is more about using the time already spent caring for your child to a greater benefit to both of you. 

So what does make a difference?   The answer is actually some very easy things.

1.  Attentive interaction:  This really requires nothing more than being attentive while performing personal cares.  Talking, engaging vision, and playing silly little games while doing daily cars is vastly different than just getting the task at hand done.   It doesn’t take any more time.  It is parent or caregiver multitasking at its best.

2.  Physical Stimulation:  Somewhere along the line a medical person told me that stimulating toes and feet increases blood flow to the brain.  I don’t know if that is true or not.  But what I do know is that massaging Maddie’s toes while I took a few minutes to sit (not a strong suit) was greatly enjoyed by both of us.  She was relaxed, more alert, and her toes warmer.  The simple motion helped me to relax, also.

3.  Play music:  Introduce your child to a variety of music.  There have been studies about the effects of classical music (especially child composers like Beethoven and Mozart.  It appears the music helps create brain paths that leads to higher intelligence. Depending on the type of music a child will be calmed, energized or even silly. 

4.  Read to your child:  I know you have heard this one a thousand times.  Reading to a child significantly impacts a child’s ability to focus, speak, and later to read.  Some of our kids may never be able to do those things but then again no one knows for sure.  Reading certainly is not going to hurt!  I am a firm believer in reading to all children under the age of 5 every single day. 

5.  Interact with other children:  Over and over again I watched one child get another child to do something.  Sometimes it is a good thing and sometimes it’s not.  Children motivate and influence each other in ways an adult cannot.  If you have other children, it happens naturally.  If you have one child, it will take more attention to arrange play dates with neighbors, cousins, preschool, or school mates.  It is worth the effort.

Note:  It is important to teach other children to play with your child rather than to “help.”  It is critical that your child have peers rather than helpers (more about that next week).

 

Help Dream a Store for Our Kids and Our Families

Wow!  What a week!  For a couple of months I have been working on a business plan for an online store dedicated to kids like ours and our families. 

Through the years I was so frustrated by things label for “special needs” that appeared to me to be a toy any kid other than mine could play with.  I searched everywhere I went for toys that maybe Maddie would enjoy and offer her opportunities for independent play.  Ha! 

The Can-Do Spirit store will carry toys, things to make giving medications easier, warming and cooling aids, and other fun things. 

The business plan has made it through round two of professionals and will shortly be submitted to an investment expert.  But I think it can be even better!  With your help...

Don't be shy.  Take a minute to tell me what you wish for, struggle with or maybe what things your child or you love.    You are helping design a store just for your family! 

Thank you!

Transforming "I can't" to "I can!"

I confess I didn't even know that Sports Illustrated Kids even existed until someone posted this video on my facebook wall.  I watched it, shared it, and watched it again.  I came home later and watched it again.  I hope it is an inspiration for you.http://www.youtube.com/watch?v=b_Lax4zFFoA

  

Brrr...

 

 

 

Brrr!  It’s cold.  I broke out my long underwear this morning.  My toes feel like ice cubes.  January is not my favorite time of year.  As the mom of a medically fragile child January and February were such a struggle. 

As you can tell, I don’t particularly like cold weather and I hate being cold.  Because Maddie could not control her body temperature, winter was a huge problem.  The rule implemented by her neurologist was if it was 10ᴼ or below wind chill, Maddie did not go outside.  Unfortunately the rest of the world does not operate by that rule.  If she was in a school system that provided a nurse, she was without a caregiver for the day.  I, of course, still needed to work.

Snow added even more complications.  Wheelchairs and snow are not a good mix.  Having clear pathways was essential to life.  At times we lived in apartments where snow removal was provided.  However, that usually meant a narrow path done with a snow blower leaving a thick coating of snow.   Thankfully I like shoveling snow because I was out early widening the path to wheelchair width and clearing the snow coat before it turned to ice. 

In addition, Maddie, with her low immune system, struggled to stay healthy.  A cold often lead to pneumonia and in activity seemed to increase her urinary tract infections.  So trips to the doctor and hospital increased. 

So what wisdom do I have about surviving the winter?

First, stay in the moment.  I am easily overwhelmed and that just makes it impossible for me to function.  So taking things one at a time and not thinking about the list of yet to do’s, helps me from creating crisis.

Two, always have a plan B.  That is not nearly as easy as it sounds, especially when it comes to being without a caregiver.  I have never had a nursing company willing to send a nurse on short notice or even have a back up if the scheduled nurse calls off.  Ahhh!  I kept a mental list of people who might be able to come for an hour or two.  If I couldn’t work a whole day at least I could teach a class, or get essential work done.  I alerted my students and supervisors that I would be taking any calls from the caregiver of the day.  I often worked from home or hospital bedside.   

Third, do something fun!  The stress of juggling everything got to me after awhile.  Every day I tried to do something fun with Maddie.  It did not have to long or involved.  But it had to be something that made us both happy.  Sometimes it was watching a movie together while I graded papers.  A few times I brought snow inside and helped Maddie make a snowman.  Often we would finger paint or glue things.  Once a while, we made cookies with Maddie running the mixer with her head switch. 

Forth, do something for someone else.  I know it sounds crazy when I am really the one who needed help.  But the truth is doing something for someone else pulls me out of my little world and helps me to appreciate that other people are struggling too.  So I would send a Maddie painting to an elderly relative, make a casserole for the nurse to take home, have Maddie make cookies for shut-ins or whatever other opportunity came to mind.  It worked then and it still works today!

 

Save the Couch!

Save the couch!  No matter where we lived, the couch was one of Maddie’s favorite places to hang out.  When she was feeling well, she was in the center of the action.  When she was sick, the couch allowed me to monitor her and do medical treatments.  It was perfect!

Well, almost.  I’m sure there are other caregivers who aren’t as messy as I am (I’m an artist, that’s my excuse!), but I spilled meds, formula, and other things I’ll leave to your imagination.  The first couch was toast in a year and a half.  So I set to work reupholstering the thing.  What a pain!  So to protect the new surface I started using cloth under pads.   It helped but before long I had a mess again.  And I certainly was not going to reupholster it again!  So we got rid of the couch.

I got smart and did not buy another couch.  This time I borrowed a daybed from a friend.  It was the best move I could have made.  I put a vinyl sheet under a mattress pad with a sheet over the top.  I could wash it every day if I needed to and some days I did.

When I went to the daybed I was thinking that I needed a surface that was washable.  But the daybed turned out to be amazing for a couple of other reasons.  For one thing, there was storage space underneath big enough to accommodate big plastic bins for diapers, blue chucks, and other assorted things.  I just put a twin sized dust ruffle with elastic banding around the metal frame and no one could tell we were hoarding medical supplies. 

The number one thing I loved about the daybed was the cuddling opportunity it provided.  Being able to cuddle beside Maddie to read a book, watch a movie, or take a nap was a little bit of heaven.  There were times when she was sick enough that I slept beside her.  Occasionally she was too sick to want me beside her so I slept on an air mattress on the floor beside the daybed. 

I learned!  If you have a medically fragile child, cover everything under and around them with something to protect the surface from wet things and cover it with something washable.  Even pillows need a waterproof cover.  There are some now that don’t feel like plastic so are comfortable to use.  A couple of women made Maddie sets of pillow cases that were bright, colorful, and seasonal.  The winter ones were flannel and summer ones cotton.  Maddie loved them.