In this issue:
The Neurodevelopmental Approach to Child Development
From the President's Desk
Featured Family
In The News
KidPower Grant and Conference
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The Neurodevelopmental Approach to Child Development
The Neurodevelopmental Approach is like no other approach to human
development. It is unique in that it looks at the whole individual, not the
separate pieces. Taking the individual pieces, without an understanding of
how they interrelate, will severely impede the success you have when working
with individuals.
Whether you have received a label, should receive a label, or are searching
for a label for your child or whether the labels are due to learning
concerns, genetic disorders, or brain injury, I encourage you to understand
labels. Labels are nothing more than a symptomatic identification of
problems or concerns. Labels do nothing but limit and lower expectations.
The potential of any individual is based upon the opportunities presented
them. If opportunities are not offered, often due to the limitations set
forth by the self-fulfilling prophecy of label expectations, less will be
achieved.
Learning disability labels are interesting in nature. Most believe they are
unchangeable conditions you must learn to live with. They are treated as
diseases. The term disease gives one the impression that there is nothing
you can do to change the situation. Left unchecked Dyslexia, ADD, and ADHD,
etc. seldom see much change. Dyslexia, ADD, and ADHD, etc. are not
diseases. When you understand the root cause of the symptoms of these
learning disability labels, you can treat the cause and alter the symptoms.
Often you can eliminate the symptoms, and thus eliminate the label entirely,
or at the least you can improve the situation immensely. Treating some of
these conditions with medication is nothing more than treating symptoms.
Learning how to cope with and compensate for these conditions will never
bring you to the point of eliminating them. Only by
addressing the root cause will freedom from labels, with all their
frustrations, pain, and limitations be achieved.
When genetic labels are a concern, you have to reach beyond the expectations
that have been set based on observations. An
example would be the label of Down Syndrome which was first identified by
Dr. Langdon Down. Once Dr. Down identified the twenty-first chromosome
abnormality, he began assessing the commonality of individuals who shared
this condition. The individuals he observed were all people he worked with
in institutions, meaning these assessments were made on individuals with
very limited opportunity. I would suspect anyone of us would have far
different outcomes had we spent our lives institutionalized. I challenge
you to look beyond the expectations and reach for typical, normal function
for your brand new baby with genetic concerns. No one really knows how much
a person with a genetic condition can achieve. Without any question,
though, normal function will never be achieved if that is not at least the
targeted goal. Most all the individuals we have worked with have far
surpassed the predictions and expectations their genetic conditions offered.
In the case of brain injury, roughly the same scenario occurs. Limited
opportunity produces limited results. Traditional methods of dealing with
the injury are typically insufficient to create the stimulation needed to
produce change.
The brain is a magnificent piece of creation. Modern science is now
beginning to understand what Neurodevelopmentalists have known since the
1930's. The brain is not hard wired. There is incredible plasticity and
redundancy of the brain. If you provide appropriate stimulation with
appropriate frequency, intensity, and duration there will be improved
function. It has been erroneously thought structure determines function.
However, the truth is function determines structure. By inputting the
proper function, you can improve function, and thus alter and improve
structure. With proper stimulation, appropriately administered, you can
have healthy parts of the brain take over the function of damaged, unhealthy
parts of the brain. It is a matter of knowing what stimulation is needed.
Traditional methods for working with brain injury do not follow the normal
developmental progression. Bypassing levels of development will only limit
success. A typical example would be putting a non-walking child into a
stander prior to that child going through crawling and creeping stages of
development. Crawling (on the stomach as an army crawl) and creeping (on
hands and knees) are the only activities that organize the lower levels of
the brain. Bypassing these steps will make a very weak foundation for
higher brain level function. A child is not born with their hip sockets
developed. The activity of crawling and creeping develops hip sockets, in
order to properly bear weight. If those imperative steps of crawling and
creeping are missed, standing in a stander will put the hips and related
structure in jeopardy.
Correctly working with tone (whether high or low) is another area that is
often misdirected. Ranging of muscles generally will cause high tone to
increase, similar to stretching a rubber band. You may get that band to
stretch out further. However, when the pressure is released it snaps back
even tighter than previously. By knowing how to release the lower bodies
own reflex system, you can work spastic leg muscles without risk of injury.
Autism Spectrum Disorder is a concern with wide ranging problems. It is,
usually, determined by a checklist. When a certain number of symptoms on
this checklist are associated with an individual, they will receive this
label. Differing symptoms within the checklist will also determine if the
label also includes Asberger's, Pervasive Developmental Disorder (PDD), or
high functioning. Most often, when working with children with this label,
you are primarily working with children who have sensory dysfunction and
metabolic problems. Getting to the root of the problem and aggressively
addressing the sensory distortions, can result in significant improvements
or even complete recovery for the individual.
At the time of birth, the brain has all the brain cells it will ever have.
There has been no scientific evidence of brain cell rejuvenation, growth, or
multiplication. All evidence to this point shows the only thing that
happens with brain cells are they die. Every second, every minute, every
day brain cells die. The increase in size and weight of a maturing child's
brain is a reflection of the growth of the connections between the brain
cells. The brain grows those connections through stimulation; specific
stimulation. There is a paramount difference between specific stimulation
and random stimulation. Much of what is done is random stimulation which
will not produce change quickly or efficiently. It produces change almost
by accident. A kindergarten classroom is usually covered with loads of
stimulation. Colors splash across bulletin boards and posters, items hang
from the ceiling, and the walls are full. Unfortunately, this stimulation
is not conducive to learning as it is too scattered and random. A room,
which offers little stimulation is actually far more successful in
stimulating learning.
Stimulation needs to be given with proper frequency, intensity, and
duration. Frequency means having enough opportunity and repetition in order
for the stimulation to produce a change in the brain and become learned
information. Often we are testing for output without the
proper input of information.
Intensity refers to the strength of the input of the stimulation. Is the
stimulation at a level where the individual is actively engaged, or have
they tuned out through lack of intensity? You can drag an individual
through an activity, but without a high level of involvement and
interaction, change or learning will not occur.
Duration has dual meaning. It refers to the amount of time the stimulation
is being given; usually the shorter the duration the higher the intensity.
Five or ten minutes of mathematics will have a far greater impact than
dragging a child through an hour of math. Duration also refers to staying
with the stimulation for however long it takes to produce change. Specific
stimulation will produce change. It may take time, though. Many times the
stimulation is creating, developing, and building new pathways to the brain.
Usually that work produces internal changes that are not always seen. Just
because immediate improvements are not evident does not mean it is time to
stop offering the stimulation. One must stay in for the duration needed to
see the outward changes. Which brings us back to the ND Approach. By
knowing what is specific, through the ND Approach of looking at things, you
can have significant change.
The ND Approach uses a developmental profile to look at two primary areas.
The first area addresses sensory input. In the area of sensory input
auditory, visual, and tactile function is identified. The second primary
area addresses motor output. In the area of motor output gross motor, fine
motor, and language function is identified. You cannot have good output
without good, clean input.
It is important to look at the whole individual. If the tactility is not
developed, you can have problems in all the other areas. If an individual
cannot feel their feet, they will not stand unaided, no matter how many
hours are spent in a stander. If an individual cannot feel their hands, it
is hard for them to write. If an individual does not use their central
detail vision properly they have a hard time formulating language, coloring
within lines, and doing anything that requires detailed vision. They also
can have many problems that develop through having an enhanced peripheral
vision. An individual who does not process sequential information
auditorily will have many problems. They will be limited in their ability
to follow directions, stay on task, and keep up with normal conversational
language. They will have problems with distractibility and conceptual
thought processes. Language problems encompass looking at the tactility of
the mouth, oral motor control, control and utilization of the lips, vital
capacity, resonation, phonation, sinus passage development, auditory
sequential and tonal processing, auditory processing rate, health, and the
condition of the ears (ear canal, inner ear, middle ear, eardrum). All
pieces need to be evaluated in order to effectively design a treatment
program.
Most families desire to take primary responsibility for their children's
welfare. Sadly, too often the family feels the least equipped to take on
that role. They are overwhelmed by the needs of their child, the newness
or complexity of the diagnosis, and the medical and/or the educational
community. The ND Approach gives the power back to the family, the true
experts of their children. The ND Approach was created to equip the parents
with the knowledge, expertise, and exact "how to" for working with their
children. Once equipped, the family has the ability to make wise choices for
their child. Families will have the on going support of the
Neurodevelopmentalist, as well as a network of parents internationally who
are actively guiding their children in the pursuit of reaching their maximum
potential.
____________________________________________
Linda Kane, Neurodevelopmentalist, Sound Therapy Specialist
Hope And A Future, Inc.
Phone: 801-395-1979
Email: hopeandafuture@hotmail.com
Web: http://www.hope-future.org
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From the President's Desk
Welcome to our 4th edition of Power Connections. I hope the school year has
gotten off to a great start for everyone.
I wanted to take a moment to express our deepest sympathies to the families,
friends and loved ones of those who lost their lives on September 11. Our
thoughts and prayers are with you all.
This edition of the newsletter has fewer sections. The articles that are
included were very informative and we felt that we needed to make room for
them. Look for the return of our regular format in January.
We have had several exciting things happen here at KidPower since our last
newsletter. The Hernandez family increased by one with the adoption of our
son Matthew. The first annual KidPower conference in Texas went very well.
We are working on coordinating the 2002 conference so look for information
on this in upcoming issues. We have also given out the first KidPower grant
to a family in New York. Congratulations to the Ducat family. We will be
giving away another grant next year and will start accepting applications in
January 2002. Thirdly, KidPower has a full page advertisement in WeMedia
magazine this month. We are very excited about the opportunity to reach
families across the US that can benefit from our services. Last but not
least, we want to say goodbye to our VP of funding, Bonne Sandars. We want
to thank her for all of her hard work on behalf of KidPower. Bonne will
still be participating in KidPower events as time permits but will be missed
on the board. We have filled this board position with someone who is
equally qualified and has spent many years working within the disability
community as a parent and a professional. We want to welcome Kim Strunk to
the KidPower board and family.
I hope you enjoy this edition of Power Connections. See you in January.
As Always,
April D. Hernandez, President
We always welcome your comments on how to improve this newsletter. Please
contact us with comments, concerns, questions or to be removed from our
mailing list. This publication is for informational purposes only. Please
consult your physician or other applicable professional before making
changes in your child's therapy, treatment, educational programs.
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Featured Family
I am still haunted by what my obstetrician said to me after Evelyn was born, as I was about to start pushing to give birth to Madeline. She looked at me from between the stirrups and said, "You can start trying again in four months," as if it were a foregone conclusion that the daughter we had just named and the baby who was still inside me were going to die.
My twin daughters were born three months before their due date, at less than
two and a half pounds each. I hadn't even met Evvy before she was whisked
off on an ambulance to Children's Hospital, and I am sure that the only
reason they brought Maddy to see me was that they weren't sure she would
survive the few hours until morning when I could get to Boston.
Phone calls to well-meaning relatives and close friends brought what felt
like condolences rather than congratulations, as I heard fear in their
voices rather than joy. My own heart was filled with dread about our babies
' suffering. As my husband and I left for Children's, I scribbled three
reminders on a scrap of paper:
· It's nobody's fault.
· Evelyn and Madeline are going to be strong babies and get well.
· It's a happy thing that we have two daughters, not a sad thing.
Looking back, I see that in the first hours after Maddy and Evvy's birth I was already learning to bolster my own strength with pieces of advice to myself that I call "words to live by". They keep me sane, they help me stay positive and they remind me to focus on solving problems rather than dwelling on them.
The first few words to live by were on that scrap of paper from the hospital, and I actually carried it around with me for months. This is the first time I have put the others on paper, but I carry them in my mind and pull them out as needed. The list constantly evolves as some challenges are put to rest and others crop up. I share them with the hope that they will help someone else.
It's nobody's fault.
I knew that I had done everything I was supposed to do for a healthy
pregnancy, and that I was not to blame for the fact that my girls were born
so early. However, I felt unspeakable grief that my innocent babies were
suffering because of my failure to keep them inside me for long enough. I
needed to experience this grief, but I also needed to move on so that I
could be strong for my babies. I also had to focus on the future rather
than dwelling on the past, so I could not afford to wonder whether my
obstetrician should have detected problems earlier on, whether I should have
confronted my boss about traveling before a bleeding episode at a business
meeting in London, whether the boat accident that my husband and I were in
had anything to do with the early rupture of membranes a week later.
Your child needs you to pull for him/her.
When I wrote, "Evelyn and Madeline are going to be strong babies and get
well," the focus was positive thinking and determination - the foundation of
a lifelong commitment to advocating for my children. I was rooting for my
babies from the bottom of my heart, and there was no room for fear or doubt.
Pity is a drain on all there is to celebrate every day.
This is the concept behind "It's a happy thing that we have two daughters,
not a sad thing." We have so much to be thankful for, and I knew it even
then. Everyone is thrilled at their babies' first steps, but when that
child has overcome incredible odds and worked so hard to take those steps,
it is even more of a cause for celebration. Those of us who spend a lot of
time going from doctor to doctor, from therapist to therapist, especially
appreciate those regular kid moments when we can hang out and enjoy a book
together, laugh about a funny noise, snuggle together in bed as Mom and Dad
try to grab a few more minutes of sleep, share Maddy's joy at "teaching
Audrey [the color] green."
Don't worry about what might have just happened.
This is handy whether your kids have special needs or not. Close calls
with danger are scary but they also are good warnings so that you will be
more careful next time. I still cringe when I think of the time I swung
Maddy up in the air and put her head right in to the ceiling fan - of course
I had to pick the baby with the shunt and neurological problems. I wanted
to call social services to report myself, I felt so unworthy of being her
mother. Luckily, she was fine and I had to move on and stop wasting energy
dwelling on it - there are always plenty of other things to worry about.
If you can do something about it, do it. Otherwise, move on.
Some problems have solutions, some don't. If there is anything you can do
that will help, then focus on that. If there's nothing left for you to do,
then don't waste your time! There is no cure for CP. The injury is what
the injury is, at least until they figure out how to re-wire the human
brain. Focus on all you can learn and do to help your child work around the
injury, to gain the confidence he or she needs to gain independence.
You are the hub of the wheel in determining the course of your child's
medical care.
Like it or not, you are in charge of your child's medical care. Maybe you
are as fortunate as we are to have found doctors who take a special interest
in your
child's well-being - it brings tears to my eyes to think of
how devoted Maddy's pediatrician and neurologist are to her, and how much it
means to our family. However, ultimately you are the hub of the wheel,
with a medical specialist or therapist at the end of each spoke. You are in
charge of making sure the communication is clear between them, you are in
charge of considering each of the specialists' perspectives and prejudices,
you are in charge of making the ultimate decision when (not if) they
disagree with each other.
Managing CP is an art and there is no magic formula that will work for
every child. When it all comes down to it, decisions are made by you,
sitting in bed at eleven o'clock at night, after you have educated yourself
as well as possible and listened to evidence and opinions from the rest of
the crowd.
Trust your instincts.
I knew that Maddy's shunt was still clogged, even after she had apparently
recovered from emergency surgery to relieve the pressure in her brain. Sure
enough, two weeks later, we were in there again for a repeat performance and
this time I insisted on surgery even though the CT scan was within normal
limits. There was a second clog that they didn't catch the first time. If
you have a strong gut feeling, follow it.
Likewise, there are many things we can do to help our children -
conventional medical and surgical interventions, physical therapy,
occupational therapy, speech and language therapy, hippotherapy,
craniosacral therapy, therapeutic swimming, hyper baric oxygen therapy,
conductive education, Adelphi suits, herbal supplements and baths, and the
list goes on. We are all constantly juggling a variety of therapies and
interventions. Money and time are limited resources, the children with CP
need to do "regular kid stuff", and you also need to consider the rest of
the people in the family. You need to trust your instincts about what the
right balance is, address it every few months, and make adjustments as you
go. The best you can do is the best you can do, and you have to have faith
in your internal barometer of what's best for all of you.
Take the good advice, discard the bad.
It is important to talk to other parents of kids with CP, for dealing with
the inevitable ups and downs as well as for learning from each others'
experiences. However, every case of CP is different and every parent of a
child with CP deals with the situation differently. Some people need to
assure themselves that they are doing the right thing for their children,
and in doing so they inadvertently criticize the path that another parent
has taken. "You mean you aren't supplementing the school PT with private
therapy? Oh, if I hadn't done more, we'd be nowhere." Talk about
shattering someone's confidence just when they need support! Consider the
source of advice that rubs you the wrong way, and remember that we're all
just trying to do the best we can for our kids.
Some people have CP, some people don't.
Our family is very matter of fact about Maddy's CP. After we had adjusted
to the diagnosis and felt strong enough to share it with other family and
friends, we had to be on guard against other people's own coping mechanisms.
Helping other people to get through their own denial when they heard the
diagnosis - "I just know she'll get over this with positive thinking," -
threatened our own still fragile acceptance of what this meant for Maddy and
our family. A few relatives wanted to buy Maddy extra toys because she had
CP. We had to stand firm and remind them that for us it is a simple fact of
life. As I say to Maddy, "Some people have cerebral palsy, some people don'
t." It does no good to dwell on it, but it does do a lot of good to accept
it and do something about it.
I am determined that as Maddy grows up she will build on her understanding of cerebral palsy and how it affects her body, and what she can do about it so that it will limit her life as little as possible. I want her to keep the wonderful self-confidence that she has, to continue to rejoice in her own accomplishments and to push herself to reach new goals. If she continues to approach things this way, she will have a rewarding life with all that any of us ever hope for - good friendships, a wide variety of interests, a terrific career, and her own family to love.
______________________________________
Written by Heather O'Neil who lives with her husband Joe with their three
terrific kids - Madeline and Evelyn are four year old twins and Audrey is
two in Massachusetts.
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In The News
Topamax warnings strengthened-The FDA and Ortho-McNeil have strengthened
the WARNINGS and PRECAUTIONS sections in the label of Topamax Tablets and
Sprinkle Capsules because of cases of secondary angle closure glaucoma
characterized by ocular pain, accute myopia, and increased intraocular
pressure were reported in pediatric and adult populations.
For more information visit
http://www.fda.gov/medwatch/safety/2001/safety01.htm#topama.
Erythromycin Linked to Newborns' Intestinal Disorder- An Indiana University
School of Medicine study has confirmed a linkage between erythromycin, one
of the most commonly prescribed antibiotics, and the subsequent development
of pyloric stenosis, a condition that affects one in 500 newborns.
http://www.medicine.indiana.edu/news_releases/archive_01/antibiotic_newborns01.html.
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KidPower Grant and Conference
Grant:
We awarded our first grant in October. We will offer another grant, to a
family who qualifies, jn October, 2002. We will
begin accepting applications January 1, 2002 and they will be due no later
than July 31, 2002.
Conference:
The 1st Annual KidPower conference and Third Annual Texas KidPower
Get-Together were held in North Richland Hills August 24-26, 2001. We had
wonderful speakers that shared some great information. Unfortunately our
day at the water park was rained out. Hopefully we will have better luck
next year.
Topics that were covered:
*Sensory Integration Dysfunction
*Management of Spasticity with neurosurgical options.
*Special Education
*Speech Language Pathology:From Eating to Speaking
We look forward to seeing lots of old and new faces at our 2002 conference.
If you would like information from any of our 2001 conference sessions
please contact us.
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Copyright October 2001, All Rights Reserved. Power Connections Newsletter is a service of KidPower Family Support Resource. http://www.kid-power.org.