the elephant in the classroom using literature to understand medically involved children

The Elephant in the Classroom

Using Literature to Understand Medically

Involved Children

It’s a fact!

1 in 33 babies born in the US will be born with a birth defect *

1 in 8 babies born in the US will be born prematurely*• *Source: March of Dimes, “Prematurity: A National Health Crises”, October

2005

We didn’t learn that when I was in school!!!

Staff in the educational setting now need to be familiar with:• Medical terminology/equipment

• general effects of prematurity/birth defects

• the effects of medical diagnosis’ and treatments on the child: cognitive, physical, sensory, feeding, social-emotional and speech/language

• How to “include” these children in the classroom

Goals/Objectives:

To discuss the prevalence of Children with Special Health Care Needs

To briefly present an established educational model for this population

To explore the use of literature with classroom peers for the purpose of teaching about the unique individual differences of these students

Definition

According to the Maternal and Child Health Bureau in 1994 the definition for Children with Special Health Care Needs (CSHCN) was:• “Children with special health care needs are those

who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

Identifying the needs in Milwaukee, WI

Survey done in the city of Milwaukee in 2004.• Results found that “The prevalence of

CSHCN in Milwaukee (23.5%) was almost double that of the nation (12.8%).

• Wisconsin Medical Journal 2006 Volume 105, No. 3

Children’s Programming at MCFI Pediatric Special Care (PSC)

• Children who attend qualify for daily nursing care (e.g., private duty nursing through T19 coverge)

• They are eligible to attend M-F (and every other Saturday) from 6am to 6pm

• PSC staffing:• RN/LPN’s, CNA’s, daycare teachers

• transport

• music Tx

• Animal Assisted Tx

• special education team• collaborate with the MCFI birth-to-3 team

• PT, OT and ST for children over 3 yrs of age

Children’s Programming at MCFI

SEDA The School for Early Development and Achievement

• a free public school chartered through the University of Wisconsin-Milwaukee.

• Founded in 2001, SEDA is an affiliate of the Milwaukee Center for Independence (MCFI).

• SEDA welcomes students with and without special needs in a full inclusion environment.

• Small class sizes allow teachers to give SEDA students individualized attention. • K3/k4-2nd grade• Every room has teacher + assistant• Special Ed/OT/PT/ST• Music Tx• Art Tx• Float RN/LPN and CNA

Children’s Programming at MCFI

Wells Street Academy (WSA)• A private school children with significant medical and

developmental needs

• Currently applying for parental choice status in MPS

• Small class size allows staff to give WSA students individualized attention • Full time special ed teacher

• OT/PT/ST

• Music Tx

• Animal Assisted Tx

• Consistent RN and CNA

The reality of working with medically involved children…

Part I

You cannot ignore the fact that differences are present!

Example: “Elmer”By David McKee

Let’s read…

The Beauty of the Story of Elmer…

“…the story teaches us the beauty of being the one you are meant to be.”

(Amazon.com book review)

The story celebrates the differences in others while noting that being different isn’t “bad”

Other?

The Beauty of Using Literature… Dyches and Prater (2008)

Promotes introspection regarding:• Awareness

• Exposure

• Knowledge• Regarding the aspects of the disability

• Understanding• Their own feelings

• The feelings and actions of others (right or wrong)

• Acceptance• A well written book may provide the emotional

experience necessary to attain this level

Teaching about Disabilities Through Children's Literature

Dyches and Prater (2008)

Incorporating Literature In the Classroom Read the book

• Discuss what made the character different from all the other students.

• Name some things that the children could do that character could not do.

• What are some things that the character can do that the other students can't do as well?

• Discuss that all people are different and have things they are good at and things they need help with and that is ok.

*Adapted from http://pegasus.cc.ucf.edu/~spneeds/books/averyspecialcritter.htm

Incorporating Literature In the Classroom

Activity• Help children to think of ways they can help others.

• Have children draw a picture of themselves helping somebody that needs help.

• Have children make a lists of their strengths and weaknesses

*Adapted from http://pegasus.cc.ucf.edu/~spneeds/books/averyspecialcritter.htm

Incorporating Literature…Recommended Books

Cancer• Me and My Marrow: A Kid's Guide to Bone

Marrow Transplants (Crowe)

• I'm A Superhero (Wilde)

• My Book for Kids With Cansur: A Child's Autobiography of Hope (Gaes)


Visual Impairment• Seeing in Special Ways: Children Living with

Blindness (Bergman)

• Knots on a Counting Rope (Martin and Archambault)

• A Picture Book of Louis Braille (Adler)


Medical Devices• My Central Line Book (Landler and Scott)

• When Jeremy Jones’ Stomach Stopped Working; A story for children with g-tubes (Reckling)


Deaf and Hard of Hearing• I Have a Sister, My Sister Is Deaf

(Whitehouse Peterson)

• A Button in Her Ear ( Bassett Litchfield)

• Abby Gets a Cochlear Implant (Cassidy Riski)


Seizure Disorder• Lee, The Rabbit With Epilepsy (Moss)

• Taking Seizure Disorders to School: A Story About Epilepsy (Gosselin)


AIDS• You Can Call Me Willy: A Story for Children

About AIDS


Diabetes• How I Feel: A Book About Diabetes (Olson)

• Taking Diabetes to School (Gosselin)


Asthma• Luke Has Asthma, Too (Rogers)

• I Have Asthma (Moore-Mallinos)


Traumatic Brain Injury (TBI)• For Kids Only; A guide to brain injury (Taylor)

• Elvin, The Elephant Who Forgets (Snyder)


Physical Disabilities• A Very Special Critter (Mayer)

• I'm the Big Sister Now (Emmert)

• Someone Special, Just Like You (Brown)

Additional Literature Resources Children’s Hospital of Wisconsin Resource Library

• (414) 266-2000• www.chw.org

Recommended websites• Children Disability Book Reviews - ADHD, Autism, Advocacy, Behavio

r, Sensory Integration and More• http://www.childrensdisabilities.info/books/

• Teacher Vision website• http://www.teachervision.fen.com/

Other various websites:• http://www.uwosh.edu/library/emc/Bibliographies/disabilities.pdf• http://www.best-childrens-books.com/childrens-books-about-disabilitie

s.html• http://mommylife.net/archives/2009/02/childrens_books.html

The reality of working with medically involved children…

Part IIYou cannot ignore the fact, especially with this population,

that death is a natural part of life.

Example: “The Fall of Freddie the Leaf”

By Leo Buscaglia, Ph.D.

Let’s read…

The Beauty of Freddie…

Helps children understand not only death but also the phases of life

“…an inspiring allegory illustrating the delicate balance between life and death.”

(book’s jacket Inscription)

Other?

Understanding of Death• Adult

• varies by experience in addition to religious belief and culture

• Child• Varies by age and maturity level

• Under 3

• no real fear or concept • experience death as separation

• 3-6 years• Death considered temporary/reversible (e.g., magical thinking)• Curious about details (e.g., what happens to the body)

• 6-9 years• Realistic approach/understand finality…but not necessarily that “it

will happen to me”• Believe in internal or external cause

• 9 and older• Understand the finality and personal relevance to death


Start by letting the children lead the discussion • ask them to draw or write what they know

about death

Child’s drawn conception of death… From “Using Drawing as Intervention with Traumatized Children”

Cathy A. Malchiodi, ATR, LPAT, LPCC


correct any misconceptions regarding mystical thinking• talk about how something that is dead can not

be pinched, tickled, etc…

• talk about things that are alive vs not alive …or create a visual chart

Alive Not Alive


read a developmentally appropriate children’s book on death topic

ask how the kids feel about the book• affirm their feelings of sad/scared/etc…

It really works and can (and should!) be done…

SEDA family tragedy

~remembrance celebration~

Literature Suggestions… Pre-school/Early Elementary School

When Dinosaurs Die: A Guide to Understanding Death (Brown and Brown)

When Dinosaurs Die “This is a most practical guide for parents and other adults who

are faced with explaining death to a child while at the same time often struggling with their own feelings about death.”

“…addresses many questions children may ask and provides suggestions for responding, keeping in mind the developmental age of the child and the unique circumstances of the individual loss.”

“…provides read-along passages for children whose parents who may need some help finding the words to express their responses.”

“This book would be most helpful if read by parents first, before using the read along passages, as the author is sensitive to the grief process of the adults as they help their children cope with their own thoughts and feelings about death.” The Barr-Harris Children's Grief Center Website

Literature Suggestions… Pre-school/Early Elementary School

Lifetimes (Mellonie and Ingpen)

Lifetimes

“This is a simply written and informative book about the life cycles of all living things.”

“…tells about beginnings (birth) and endings (death) with living in between as natural and inevitable.”

“…describes different lifetimes for different living things as well as lifetimes that are shortened due to unusual circumstances.” The Barr-Harris Children's Grief Center Website

Literature Suggestions…Older Elementary School

The Brightest Star (Hemery)

The Brightest Star

“A little girl, grieving the death of her mother, finds comfort in looking for the brightest star in the sky to remind her of her mother’s love.”

“…reassuring text [with] the description of real feelings.”Seasons of Grief

Literature Suggestions…Older Elementary School

Tear Soup (Schweibert and DeKlyen)

Tear Soup describes how we each individually grieve loss in our

lives “The story is about "Grandy," but she could just as easily

be me or you, and Grandy has suffered a loss, so Grandy begins to make tear soup. Tear soup cannot be made just out of a can, but is an individual process…” Amazon Review

“The full page illustrations through which the text of the story run show an even richer tale of the other people and pets in Grandy's life who interact with her recipe and add a powerful depth to an already touching story…” Amazon Review

Tips section at the back of the book is rich with wisdom and concrete recommendations Product Description

Literature Suggestions…School Staff

Remember Lee: The End Is the Beginning--A Mother's Journey Through Loss (Musser)

Remember Lee: The End Is the Beginning--A Mother's Journey Through Loss

Original title: God Is A Birdwatcher. “Linda started to write after the death of

her son, Lee, in an automobile accident. Walk with her as she faces friends, families and the reality of her grief.” Product Description

Literature Suggestions…School Staff

Keys to Helping Children Deal With Death and Grief (Johnson)

Keys to Helping Children Deal With Death and Grief “This easy-to-read book guides parents, teachers and

other caregivers through the fundamental aspects of bereavement in children.”

“…tackles such subjects as Explaining Death, the Funeral, and Religion and Grief simply and compassionately through concrete examples.”

“… glossary and recommended reading list enhance the text…”

“…Question and Answer section - while brief - addresses some of the common questions children have regarding death and dying.”Reviewed by Anne Glowinski, MD, Parents' Choice® 2000

Additional Death and Grief Literature Resources Seasons of Grief Catalog

• www.centering.org The Barr-Harris Children's Grief Center website

• Link: Recommended Books About Death and GriefFor Children and Adolescents

• www.barrharris.org/barbooks.html Children’s Hospital of Wisconsin Resource Library

• (414) 266-2000• www.chw.org

Margaret Ann’s Place • (414) 732-2663• www.margaretanssplace.org• Will come into your school and provide support and assistance with classroom

discussion

Comments?Questions?Concerns?

the elephant in the classroom using literature to understand medically involved children

Documents

classroom slide

special needs

cna slide

prevalence of children

private school children

yrs of age slide

david mckee slide

mcfi seda