Volume 26, Number 1, Winter 2008

President’s Message: Pamela K. DeLoach

DPHD is entering its second year of rebuilding our division.  Most of you will have noticed that you are receiving the DPHD newsletter on a regular basis and our website is functional. We have a full slate of officers for 2008 and have wonderful sessions sponsored by DPHD at the CEC convention planned for April 2008 in Boston (see below). As your president, I see a great year for DPHD as we continue to work towards our goals:

• Rebuilding our membership.
• Continuing communication with the leadership.
• Encouraging committee work throughout the year. Please contact the chairperson for each committee (listed in the 2008 Officers list) if you would be interested in the being a part of one of these committees.
  • Severe/Multiple Disabilities
  • Hospital/Homebound
  • Knowledge & Skills
  • Critical Issues & Leadership

As we continue to work on our goals, WE WILL be able to make a difference for students with physical, health, severe or multiple disabilities.

Have a great 2008,                 Pam

Welcome New Members!

We want to welcome the new members to DPHD who have joined since our last newsletter! Contact Pam at pdeloach@tampabay.rr.com if you would like to get involved with one of our committees, or perhaps think about a seat on our board.

Join us in Boston for the 2008 Council for Exceptional Children’s Annual Convention and Expo

This year’s convention will be located in Boston, MA, April 2-5, 2008.

DPHD is hosting 12 lecture/demonstration/panel sessions, and seven poster sessions. See the list of sessions below to begin to plan your schedule for your time in Boston. Meeting dates and times are also posted. We would love to see you at our annual business meeting.

DPHD Sponsored Sessions at CEC 2008 in Boston

Thursday Sessions: Division Day

8:30-9:30         Traumatic Brain Injury: Strategies that Improve Academic Performance

                        Darlene Fewster

9:45-10:45       Promoting Reading Fluency for Students with Physical Impairments

                        Mari Beth Coleman & Kathryn Wolff Heller

9:45-10:45       DPHD SHOWCASE SESSION

 AAC: Augmenting Art Class:  Carol Goossens

11:00-12:00     A Primer on Physical and Health Disorders in Youngsters with Severe/Multiple Disabilities: Meg Cooper

1:15-2:15         Enabling Environmental Control in Individuals with Profound Multiple Disabilities: Richard Saunders

2:30-3:30         Learning Profiles of Survivors of Pediatric Brain Tumors

                        Beverly Barkon

3:45-4:45         Using Balanced Literacy for Students with Physical Impairments

                        Adrienne Duris

Poster Sessions

1:30-3:00:        Central Nervous System Chemotherapy and Late Effect Neuropsychological Deficits in Childhood Leukemia: John Lavach

3:30-5:00         Neurologists’ View of Current Medications: Spasticity and Athetosis

                        Kenneth Coffey

Keyboarding Accuracy for a Student with Physical Disabilities: A Synergistic Approach: Kenneth Coffey

Friday Sessions:

11:00-12:00     Coping with a Student’s Death: A Cross-Cultural Approach

                        Alberto Bursztyn

2:30-3:30         Classroom Considerations for Children with Food Allergies and Restricted Diets: Keely Camden

5:00-6:00         IDEA – Other Health Impaired or Section 504: Can Your Child Qualify?

                        Yvette Getch

Poster Sessions

10:30-12:00     Can Full Inclusion Harm Children with Disabilities? Comprehensive Integration Solves the Problem: Melissa Larson

                        Addressing the Transition Needs of Students with Spina Bifida

                        Delar Singh

Saturday Sessions:

8:30-9:30         Cooperative Supports for Students with Severe Disabilities who have Chronic Health Conditions: Kyoung Gun Han

9:45-10:45       Tourette Syndrome and Associated Disorders in the Classroom

                        Susan Conners

Poster Sessions

1:30-3:00         What Teachers Need to Know About Lyme Disease

                        Lysandra Cook

                        Children with Cancer: School Related Issues

                        Nikki Murdick

DPHD 2008 Officers and Committee Chairs

Elections were held during the fall for officers for the 2008 calendar year. We are pleased to welcome Blanche and Sylvia to the Executive Board and know that we will have a productive year as we continue to build DPHD. It’s not too early to start thinking about the election for officers for 2009! We are looking for someone who would be interested in being the DPHD secretary for 2009-2011 and a new vice-president who moves “up the ladder” to the past-president position (a four year commitment). Would you be interested in being more involved with DPHD? Come to Boston and join us at workshops and meetings to see what we do and how you might be interested to contributing to your DPHD!  Or contact Pam and she’ll help figure out a good spot for you that complements your interests.

Officers:

2008 President:                       Pam DeLoach  (pdeloach@tampabay.rr.com              

President-Elect:                        Mari Beth Coleman (mbc@gsu.edu)

Vice-President:                         Blanche Jackson Glimps bglimps@tnstate.edu

Past President:                          Alison Stafford (alisonmstafford@gmail.com)

Interim Secretary:                     Peggy Allgood (peggyallgood@hotmail.com)

Treasurer:                                 Sylvia Martin (smartin@monmouth.edu)

Historian:                                  Mark Oppenheimer

CAN Coordinator:                   Donald Cross (dpcross@insightbb.com)

                                                Alternate: Adrienne Duris (see Finance committee)

Student Representative:             To Be Appointed

Publications:

Journal Editor:                          Barbara Kulik (barbara.kulik@csun.edu)

Newsletter Editor:                     Joni Baldwin (baldwijL@notes.udayton.edu)

CEC Today:                             Pam DeLoach (see President)

Committee Chairs:

Critical Issues & Leadership:     Kathy Heller (kheller@gsu.edu)

Knowledge & Skills:                 Joni Baldwin

Severe/Multiple Disabilities:       Alison Stafford & Pam DeLoach

Home/Hospital:                         Adrienne Duris & Sylvia Martin

Constitution & Bylaws:             Liz Cohen (Elisabeth.Cohen@pisd.edu)

Finance:                                    Adrienne Duris (alduris@aol.com or adrienne.duris@cobbk12.org)

Advisory Board:                     Michael Weinroth (mikeweinroth@aol.com)

   THE SOCIAL-EMOTIONAL CHALLENGES OF INCLUSION FOR STUDENTS   WITH CEREBRAL PALSY

Adine Usher

The Challenge

Federal law that mandates student placement in the least restrictive educational environment has resulted in full-time regular education classroom placement for increased numbers of students who live with the varied conditions of cerebral palsy (CP). It is not my intent to engage in a pro or anti-inclusion discussion but rather to highlight for educators, therapists, parents, and administrators, the range of social-emotional challenges that can confront students when they experience the school environment in ways significantly “different” from their typically developing peers. Nor is it my intention to purport that all students with CP experience significant social-emotional challenges. However, based on my extensive experience in the field as a special educator and from a careful reading of the literature on self-esteem, self-determination and participation, I know that students with CP may experience, either overtly or in ways that are not overtly communicated, at different times during their school tenure, extraordinary stressors and barriers that result in unhappiness, isolation and social rejection. The problem is exacerbated when students are the only ones in their entire school community who lack access to peers who share their unique challenges.

We live in a world that worships and rewards physical perfection and those who lack this perfection often pay the heavy social-emotional price of stigma. The world of children, in elementary and middle school especially, is a world based on active physical interaction with the environment, in academics and in play. The construct of social/emotional wellbeing is complex and encompasses variables that are both internal and external to students who have CP. Today, in inclusive school settings, considerable time is dedicated to making physical and educational accommodations for special needs students but insufficient attention is paid to students’ social-emotional well-being. Addressing these needs requires purposeful action and attention.

It is difficult to find homogeneous subgroups with the CP population. Research on self-concept, social engagement, participation, dependency, self assertion and determination can be conflicting and tends to study students with mild to moderate CP. Excluded from their data are students who experience chronic pain, who are non-verbal, who have co-morbid disorders, who have learning disabilities and whose gross and fine motor disabilities render them unable to independently perform many functional, educational and recreational tasks (Shields et. al. 2007). 

Ideally, students with CP will experience the school day in a relative state of contentment, can make and sustain friendships, perceive that they are accepted and valued by the adults and peers, have age-appropriate peer group experiences, participate fully in routine classroom activities, are given every conceivable opportunity to perform and shine independently, have a chance to express their needs, thoughts, desires and opinions, can develop an understanding of their disabilities and have pride in their own strengths and accomplishments.

Disability-related barriers

What then are some of the disability related conditions that can diminish the quality of social-emotional wellbeing for students with CP in inclusive settings? The most obvious influence is that of significant gross and fine motor dysfunction: dysfunction that requires nearly constant adult support and limits easy access to the typical activities of the academic and recreational routines. These motoric issues necessitate the use of a range of adaptive equipment and scheduled pull-out for therapies that, while improving student functioning, further identify students as being different.   

The semi-social activity of eating can cause significant social distance from peers when it involves the inability to set up one’s lunch, feed oneself, chew with one’s mouth closed or refrain from drooling.  Physical and emotional fatigue and stress can result from attempting to keep up with the pace of instruction and the volume of work and when this problem is chronic, students may experience self-doubt and reduced motivation

75% of students diagnosed with spastic CP experience some form of learning disability (Dormans & Pellegrino, 1998); learning challenges are also found to some degree in all types of CP, at all levels of severity. Indeed, students with a diagnosis of mild CP, who have minimal physical issues, may have undetected, “hidden” sensory and learning disabilities. The general expectation that these students “should” perform like their peers can leave students feeling anxious and misunderstood.

Additional challenges lie in the presence of muscular pain and strain, gastrointestinal discomfort, temperature regulation difficulties, respiratory dysfunction or the effects of medications prescribed to control seizures, reduce spasticity or improve attention and focusing.  Attention, alertness and a desire to connect with others may be compromised because the students are simply not feeling very well. Having a higher-than average rate of school absenteeism due to illness or hospitalization is yet another variable that may set students apart form their peers.

When students are over-dependent on aides they may remain overly self-involved, lack sensitivity to the feelings and needs of others and are slow to develop the social currency needed to make and keep friends.         

Both verbal and non-verbal communication issues can raise serious barriers to social-emotional development in students with CP. Dysarthric students can be difficult to understand and non-verbal students, even when supported from an early age with effective augmentative communication systems, struggle to establish social communication with their peers.    

Difficulties with the paralinguistic features of non-verbal communication are still poorly understood by most school faculties. This neurologically based condition makes it difficult for some students with CP to read and respond to the body and facial language of others and they struggle to respond in ways that are considered socially appropriate (Lavoie, 2005).

In the middle and upper grades, adults assume less control over the formation of student social groups and social connections. Self-esteem and participation research on students with CP in middle and high schools, report infrequent opposite sex contacts and rare dating experiences. Girls with CP are reported to have fewer friends, experience more feelings of social isolation and report more incidents of verbal and physical intimidation than are experienced by their typically developing female peers (Nadeau & Tessier, 2006).

Guidelines for Supporting Social Emotional Wellbeing 

*Familiarize yourself with the range of conditions that may impact social-emotional wellbeing in students with CP.  *Don’t believe that simply placing students in inclusive settings will solve social issues.  *Carefully observe where, when and how social-emotional barriers arise for students.  *Look for indications of pervasive unhappiness, depression, isolation and irritability.  *Identify behaviors that may cause classmates to withdraw and consult with colleagues to develop a plan of remediation that should raise the special student’s problem solving skills.

*Demystify disability for typical students and honestly and respectfully answer their questions about physical differences.  *Guide students to appreciate the “normalcy” of difference and help them to focus on the person behind the disability--who is this person, what does he or she like to do, what do they have in common with one another, what strengths does each have to share?  *Present disability awareness programs that are age-appropriate: that reflect the changing dynamics of social stress as students age and that can respond to students on an as-needed basis.

*Avoid using language that demoralizes students; CP is a condition, not an illness; students use wheelchairs- they are not confined to them. *Hold students with CP to reasonable high standards and be attentive, respectful but not patronizing.  

*Modify and adapt environments in ways that weave students with CP into the physical, recreational, social and academic fabric of the school. *Don’t remove students from class during socially enriching activities. *Pair students with CP with typical partners and mentors for both academic and non-academic activities and find opportunities for students with CP to be a mentors.  *When possible, included peers in push-in therapies. *Include in class libraries, books about children and adults with CP and invite to career day programs, adults with CP who are living satisfying lives.  *Encourage aides to facilitate meaningful social communication between their students and peers and teach them to structure conversation and games that the student with CP can handle and recognize when to step back to let the student socialize without adult intervention or oversight.

*Provide social skills training when students are unaware of their social deficits.  *Look for out-of school activities that promote socialization (including responsible internet contacts) with other students with disabilities who have similar interests.  *When needed, provide counseling that allows students to explore the full range of their social/emotional challenges.

By understanding, addressing and mitigating the ramifications that accrue from the realities of CP, we can limit student self-doubt, isolation and frustration and build contentment, satisfying social interactions and positive self-regard.

Dormans, J.P. & Pelliegrino, (1998). Caring for children with Cerebral Palsy: A team approach. Baltimore: Brookes 24-25.

Lavoie, R. (2005). It’s so much work to be your friend. TOUCHSTONE, NY. 73-111

Nadeau, L. & Tessier, R. (2006).  Social adjustment of children with cerebral palsy in mainstream classes: Peer perception. Developmental Medicine & Child Neurology. 48(5). 331-335.

Shields, N, Loy, Y, Murdoch, A., Taylor, N., & Dodd, K. (2007). Self-concept of children with cerebral palsy compared with that of children without impairment. Developmental Medicine & Child Neurology. 49(5) 30-34.

Special thanks to Shannon Converse, Ed.M. and Carol Courtadon, parent, for their contributions to this article.

DPHD is Accepting Nominations for Awards

Wetzel Scholarship

The Elizabeth Wetzel Scholarship awards up to $500 to students working toward a teaching credential in physical and health disabilities. To apply for this scholarship, submit the following:

Personal Information: Telephone number, email address, school attending, type of degree.

            Summary Statement: A 300-400 word essay stating:

1.      Professional philosophy

2.      Goals for teaching students with physical and health disabilities

3.      Statement of progress towards these goals

4.      Official transcript

5.      Two letters of support from instructors and/or colleagues.

Joan Wald Baken Award

The Joan Wald Baken Award was established in 1997 to honor the memory of the devoted member of DPHD who dedicated herself to individuals with physical and health disabilities. Up to two awards are given annually to individuals whose accomplishments represent exemplary advocacy and educational practice. The recipient must be involved in direct delivery of services to individuals with physical and health disabilities in schools, hospitals, clinics, homes, or in the community. Self nominations or nominations by colleagues will be accepted. To apply for this award, submit the following:

            Personal Information: Name, address, telephone number, email.

            Summary Statement: A 300-500 word narrative stating qualifications for the award, including:

1. Lengths and types of service to persons with physical and health disabilities
2. Description of service/advocacy efforts
3. Outcomes achieved on behalf of persons with physical and health disabilities
4. Future activities and goals
5. Resume.

Send completed packets for either award to:

Pamela De Loach, 6711 Spanish Moss Circle

Tampa, FL 33625    

DPHD Sponsored Meetings at CEC 2008 in Boston

All meetings are held at the Sheraton Boston.  Come join us and get involved with DPHD. You can make a difference!!

Editor’s Note: Questions or comments about the newsletter? Want to contribute an article for the next newsletter? Please contact me at baldwijl@notes.udayton.edu, or 213A Chaminade Hall, University of Dayton, 300 College Park, Dayton, OH 45469-0525. We value your input! Joni Baldwin, Ed.D.