In This Issue:
Hippotherapy/Therapeutic Horseback Riding
Challenging
From the President's Desk
Kid's Corner
Featured Family
In the Library
KidPower Grant & Conference
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Hippotherapy/Therapeutic Riding
As both a registered therapeutic riding instructor and an Occupational
Therapist (OT) volunteering in a hippotherapy program, I have seen many
great benefits come from using a horse in a therapeutic setting. While
there are some similarities between the therapeutic riding (TR) and
hippotherapy (HPOT) the goals differ.
TR focuses mostly on gaining riding
skills with the aim of making the rider as independent as possible on the
horse. HPOT doesn't teach riding skills, instead a certified therapist (OT,
PT, or SLP) uses the movement of the horse to elicit specific responses in
order to meet therapeutic goals such as improved posture, trunk control, and
balance.
In HPOT, the therapist often does part of the session on the
horse, and then finishes the session off the horse working on more
functional activities such as gait training or walking. In TR, the
instructor picks activities that develop riding skills such as steering,
following directions, or posting the trot that will help the client become a
better rider.
For example, the therapist or the instructor might both use an exercise such
as weaving around cones. The therapist might use this exercise to
facilitate weight shifts, to gain better trunk control or head control,
or to use vestibular movement to change the level of arousal. The TR
instructor might use this activity to develop independent control of the
horse. Independent control of the horse, however, takes into account that
the rider can:
*balance on the horse with both hands free
*follow at least a 2-step direction
*attend to the task and to other riders in the arena
*understand cause and effect
*have fine motor/grip strength sufficient to hold the reins
Because HPOT is therapy on a dynamic surface, you require a physician's
prescription and insurance may pay for all or part of it. You do not
require a prescription for TR, although many centers will ask for a medical
release form. In addition, insurance will not pay for TR, but lessons are
usually less expensive ($10-20) compared to HPOT ($75). If you are
interested in learning more about either HPOT or TR, contact NARHA at
(800) 369-RIDE or
www.NARHA.org for a center in your area.
________________________
Written by Patty Kelly, MSOTR/L. She works in the IL school system and has
been working in
therapeutic riding for 6 years.
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Challenging
The Trumbull Rotary Blue Jays combine both boys and girls into an
inspirational team. Each player brings a unique set of challenges to the
team that is part of the Challenger Division.
This special needs team is an active part of the Trumbull Little League
Organization. I am just a small part of this rare team.
Ian, our manager, schedules other local challenger teams for us to play. He
has also organized trips to Minor League baseball games for not only our
team, but other teams in the area as well. He is the one that makes sure
we, as a team, have all the equipment needed and it is in great shape. He
shares the making of the roster with the head coach, Dan, who serves many
roles.
Dan is not just coach but also friend, cheerleader, disciplinarian, and
father to our thirty players.
There is a set of parents that serve as our helpers, cheerleaders, and P.A
announcers. At any game, there is at least one parent helping someone, if
not their own child, out on the field. Siblings don't sit on the sidelines
either.
There is a variety of tasks for the siblings but the one thing we ask them
to do is cheer. They cheer not only for our team but also for the other
team.
What do I do? When it is time to bat and all thirty players, some in
wheelchairs and others with buddies to help them, need to know where to go,
they come to me. They enter my domain. I am the dugout manager. It is my job
to make sure these players get up to bat safely and in order.
Managing a dugout of little leaguers takes patience. Managing a dugout of
challengers takes a love of not only the game but of the players as well.
___________________________________
Written by Debbi Hedrick, sibling
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From The President's Desk
It is hard to believe it is already time for another edition of Power
Connections. I want to thank
everyone who contacted us and let us know how much they enjoyed the first
edition. We hope that the newsletter just continues to improve. If you
ever have any suggestions please send them to us.
In our July edition we plan to start an Ask The Therapist section
(SLP,NDT,OT, PT). If you have a question you would like to ask please mail,
email or phone those in to us. We will answer as many as possible.
The last few months have been busy ones here at KidPower. We have been
working on funding, which is a top priority, so that we can continue and
expand our programs. We have also been concentrating efforts on getting out
in communities around the US to spread the word about our organization. We
have enjoyed meeting all the parents and families and hope that we have
given them helpful information and support. If you are in the Ft. Worth,
Texas area come out and see us at the UCP of Tarrant County Freedom Fair on
April 28 at Amon Carter Exhibit Hall.
We hope you enjoy this issue of the newsletter as much as you did the first.
Have a wonderful Spring and look for our next edition to be at your door in
July.
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, at: newsletter@kid-power.com or toll free at (866) 543-7697
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Kid's Corner
Reviews by Mackenzie Diamond
Searching for David's Heart
By Cherie Bennett
This book is about Darcy's brother who dies and his heart is donated for a
transplant. She goes to Miami to look for Winston Pawling (the boy who has
his heart). She searches for David's heart and succeeds.
I really liked this book. It was very exciting and I learned a little about
organ donation.
The Barn at Gun Lake
By Johnnie Tuitel and Sharon Lamson
This book is about Johnnie, a boy in a wheelchair who was born with cerebral
palsy. Johnnie and his friends go camping to observe the strange happenings
at McGruther Barn. It is an interesting mystery, but I won't tell you the
ending so as to not ruin it. There is a boy named Travis that does not
respect Johnnie because of his wheelchair but later Travis learns Johnnie is
just like him.
What is most important about this book is the author also has cerebral
palsy. I like mystery books and found this one interesting.
Rolling Along, The Story of Taylor and His Wheelchair
By Jamee Riggio Heelan OTR\L
This is the story about Taylor and his twin Tyler. Taylor has cerebral
palsy. The story discusses Taylor's wheelchair and walker. Tyler helps
Taylor by pushing him in the wheelchair and by helping with his stretching.
It also discusses the changes his school made to help him get around in his
wheelchair.
I thought this book was interesting because it showed the changes the school
made to help Taylor and how Tyler can help Taylor. Even though they are
twins, they are very different.
________________________________________
One of My Favorite Sites On the Web:
Neopets at http://www.neopets.com. You can own a pet in cyberspace.
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Featured Family
I began working as a Speech-Language Pathologist in 1993. My work
experience has been primarily in rehabilitation hospitals, with some
outpatient work as well. I have worked with infants and children in the
past, but my primary experience has been working with older children and
adults.
I was 33 when I had my son. Having a child is a life changing experience
for any parent. I have learned so much and my perspective has been forever
altered. I had many fears about having a child, one of which was the
possibility that I could have a child with a disability. After seeing so
many tragedies at work, I didn't think I could handle it. I work in
healthcare everyday. I know health problems can devastate an individual, as
well as a family.
I had a perfect pregnancy. My water broke around 9 p.m. on the exact due
date given to me by the ultrasound technician. Our son, Shane, was
delivered about 15 hours later with 2 hours of pushing. The cord was around
Shane's neck but his Apgar was 7 and 8, nothing unusual. He was 7 lbs, 11
oz. and 20 inches long.
Shane was beautiful. My husband and I fell in love with him instantly. He
was sleepy and had a few unusual symptoms, including persistent tongue
thrusting. Initially he could not move his right side. He began moving his
right side after a few seconds. Our pediatrician was concerned, an EEG was
ordered and seizures were detected.
Our worst fears were realized. Our child was diagnosed with a seizure
disorder. My husband and I wept for our new baby boy. The pain of
childbirth and recovery were nothing compared to the fear and sorrow we felt
for this sweet, innocent and beautiful baby. We didn't want him to hurt or
suffer in any way. I was also now on the other side of the fence as a
parent of an infant with a disability.
I have experienced so many emotions; intense feelings I never knew I had.
I recall in college studying the stages of grief. I remember these included
anger, denial, guilt, depression, and acceptance. It is one thing to study
grief and another to live with grief. We were grieving. Like a roller
coaster, we experienced these emotions. I recall in the hospital how much
sorrow I felt. I cried when I was told they would have to do an EEG, CT
scan, MRI on our precious baby. My husband and I felt so frightened, lost
and frustrated.
I have experienced anger many times in dealing with medical professionals,
billing departments, etc. This anger was almost frightening at times. I
have had to fight with hospitals to transfer records to the neurologist we
chose to use. Many times I was emotional and not objective.
We brought Shane home Easter day. We were excited, relieved and scared. At
four months of age, the neurologist gave us the diagnosis of mild cerebral
palsy. Specifically, spastic/ataxic quadriplegia. The EEG results showed
partial/complex seizure activity in the frontal lobes. Medication was
controlling this, however Tegretol was started in addition to the
Phenobarbital.
I felt so responsible as they attributed his problems to "birth trauma."
In my mind I blamed myself. How could I do this to my child? I know this
was irrational thinking, but this is how I felt. We began receiving
Physical and Occupational therapy. We also had initiated an early
intervention program through our Regional Center. I believe this has been
the best thing we could have done for Shane.
Now, at ten months, Shane has done beautifully. There are still areas
which are "delayed" but our son is crawling, cruising and just beginning to
stand on his own. We still need to stretch him, as his spasticity
fluctuates. We have ankle-foot orthotics, which we need to put on him to
help stretch his heel cords. His fine motor skills are delayed and speech,
but this doesn't stop him from trying.
I have had to tell the therapists when I am overwhelmed. I have been
embarrassed many times because I cannot remember a word they told me. I
asked if other parents of children with disabilities are like this. I was
told many are but are afraid to say anything. I have told our therapists
how silly it seems to tell us, as new parents, not to compare our children
to others. It is human nature to do so.
This whole experience has been interesting. I work only on weekends now as
a Speech Pathologist.
I try to apply what I am learning from our experience. I need to remember
to slow down and listen to the patients I work with and their loved ones.
I try not to bombard with education and information as I know one can only
process so much when you are emotionally involved. I try harder to remind
myself to look at the big picture, rather than just my area of expertise. A
kind word, a listening ear and a shoulder to cry on have gone a long way for
us. I am trying to give this back to those I work with.
We thank God everyday for Shane and for all who have helped him along the
way. It is an ongoing process. We are learning to take this one day at a
time. We celebrate each achievement and remember its okay to cry or take
time out when there are setbacks. It has not been easy. The most
interesting thing I have realized is with grief, one doesn't work through
one stage and move on to another. You move back and forth between the
stages.
I have grown up a lot in the past year. I think I realize now that every
person will at some point in their life, face challenges. None are easy.
Many have it harder, many have it easier (or so it seems). Instead of
saying "why me?" or" why our son?" I pray for the strength to love him as he
is and to be there for him. Shane already has a determined spirit. He does
not know what all these labels mean. It is up to us to guide him and
instill the courage and faith to be his best. It is up to us to teach him
how to find joy in living each day to the fullest. Shane's name means "God'
s precious gift".he has been just that to us.
____________________________________________
Janel Butera, SLP, is the mother to Shane. They live in CA.
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In The Library
An interesting group of books exist in biographies of families with special
needs children. No they don't have a list of do's and don'ts, but they tell
the story of what a particular family has tried. How it worked for them. How
it affected their family, and what outcomes were seen. In some cases
families open up and share their most intimate thoughts with us, knowing
they may be able to help other families going through similar situations.
Some write as a tribute to their children who have so profoundly changed
their lives. There are so many of these books available, but here are a few
I've found very worth while.
Grief Dancers: a journey into the depths of the soul, by Susan Zimmerman
Susan Zimmerman shares her life with us as she searches for a diagnosis for
her young daughter, while trying to keep the rest of her life together. We
get
an inside view of what having hundreds of volunteers coming through your
home for patterning does to a family. Of what trips around the country to
specialist does
to a relationship. Of how hard it is to keep a career going while caring for
a child with a degenerative condition.
We all can relate to the guilt Susan carries as she worries if that drink of
water was the cause of Katherine's problems. We are all introduced to the
world of Rett Syndrome as Susan is. How we all can relate to the looks in
stores, those friends who stop calling, or inviting us. How hard it is to
explain all this to family members. The frustration of trying to meet all
the needs of her nonverbal special child.
Even sibling relationships are harder, but shared. Alice loves her like a
big sister, yet she has to take that roll on in many ways. Helen shares her
feelings about Katherine in her poetry .
Susan shares every attempt at that perfect school program. At all the extra
tasks that need to be fit into a day. She also shares how she and her
husband Paul work at making time for themselves, having figured out that it
is necessary to their being able to keep going and meet Katherine's needs.
As you read this book your knowledge grows as does your love for this
family. You get a true feeling of what their days are like. You can just
picture them in your mind as they work as a unit to help Katherine achieve
her best, while each growing in their own ways. A very worthwhile read.
Eagle Doctor: Stories of Stephen my child with Special Needs, By Chrissy L.
Nelson
As a single foster, then adoptive mother of Stephen, Chrissy shares with us
the struggles of everyday life as she uses her nursing skills to enrich
Stephen's life. Despite all the equipment Stephen needs to live day to day,
Chrissy doesn't feel he is a burden, but sees his potential as a vital human
being. Where others see all the equipment, she sees a child longing for
everything a young child wants. While many believed Stephen would never see
the world beyond hospital walls, Chrissy believes she can help him see the
world. All those wires and equipment don't scare her off. She sees the child
they are wrapped around and starts to have dreams for a future for him!
With Stephen's American Indian background, Chrissy strives to enrich
Stephens life with rituals and traditions that are part of his heritage.
Chrissy shares that first visit to her parents as she put them at ease with
all Stephen's equipment as they started to see him as a special little boy.
She shares with us just how she & Stephen communicate. His awkward signs,
his eye motions. She wishes that his special care givers at home who also
understand him can always be with him when she can not. She feels his pain
when he can't make himself understood.
Stephen & Chrissy help to teach the medical profession that they don't
decide who lives and who dies; for Stephen out lives the odds many many
times.
After adopting Stephen Chrissy marries, but her marriage and Stephen's care
are always at odds. It takes two long years of paper struggles to arrange to
move Stephen and all his paperwork to a different state. The system is so
rigid it overtakes the energy Chrissy needs to care for Stephen, not fight
the system.
As the system takes over you feel Chrissy's pain as she has to break her
promise to Stephen and place him in a facility. This is so hard for Chrissy
it breaks her heart and spirit. After a long winter apart, as Chrissy heals
herself while Stephen grows stronger, they are again to be reunited. Would
all the systems allow this?
Many families can relate to all the hoops Chrissy has to jump through in
dealing with the system. In and out of the hospital, many surgeries,
comments, looks, spoken and unspoken messages.
Stephen's wish being granted by Make a Wish is especially touching. His trip
to Florida to see the ocean takes an enormous amount of planning with all
his special equipment needs. His dolphin memories are special moments he
will never forget. No child could ask for more love than Stephen gets from
Chrissy. As we
leave Stephen he is celebrating his 13th birthday. We will all be waiting
for an update on his 14th birthday.
________________________________________
Written by Joy Liebeskind
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KidPower Grant & Conference
Grant:
We will be offering one cash grant this August to be used on therapy or
equipment expenses. This grant will be a $500 award and will be offered to
one family who meets our qualifications. If you would like a copy of the
qualifications and an application please contact us. We will accept the
first 20 applications with no more than 5 from each state in the United
States. In 2002 we hope to be able to offer several monetary grants.
We are searching for funding sources. If anyone has information on this
please contact us. Donations are always greatly appreciated and fully tax
deductible.
Conference:
The 1st Annual KidPower conference will be held in Ft. Worth on August 25,
2001. The annual Texas get together will be held that same weekend and we
will be going to the water park in North Richland Hills on August 26.
Look for a special conference mailing at the end of May or beginning of
June.
Tentative topics for the conference include:
*Sensory Integration Dysfunction
*Neurosurgery
*Special Education
*Speech
We hope to see many of you there. This will be a wonderful opportunity to
learn and network with other families.
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Copyright April 2001, All Rights Reserved. Power Connections Newsletter is a service of KidPower Family Support Resource. http://www.kid-power.org