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Not long ago, our staff and board arrived at a theme for our upcoming annual conference, known to most of you as WAGONWHEEL. There were many good ideas and suggestions, but this theme seemed to capture the unlimited possibilities of the time in which we live. And I know this to be true based on personal experience.

My oldest daughter, Sydney, recently celebrated her 10th birthday. When I look at her today, how far she has come and her potential for the future, I indeed know that anything is possible.

A decade of memories flood my mind as I look back on the life of Sydney. I remember the joy of giving birth to my first child, the complete shock of learning shortly thereafter that her brain had not developed properly. The nurse telling me in all sincerity that she was sorry my little girl was not born “perfect”. My response was that it was a matter of perception, and she was “perfect to me.”

The surgeries and visits to the doctors offices. The many sleepless nights lived in fear that she could die at any moment. The medical equipment that had to be taken with her everywhere she went. The toll exacted on my marriage due to the adjustments of caring for an infant with significant physical and cognitive disabilities.

But above all, I remember being told that she was a “Failure to Thrive” child—and that she would never walk or talk. I remember never hearing about early intervention services until she was nearly two, and feeling discouraged that I wasn’t able to access these interventions until late in the game that could have helped Sydney in her early development. Her future did not look extremely bright.

At the same time, I recognized very clearly that through Sydney I was a much different person. I often tell people that she saved me from being commonplace. Her birth brought me perspective about what is truly important in life. The shallow and superficial things that formerly amused and interested me didn’t mean that much anymore. While I was raised with a deep belief in divinity, I understood my destiny and purpose for the first time in my life.

Anything is possible. My “Failure to Thrive” daughter now thrives. She reads, speaks, walks and enjoys most of the things her non-disabled peers enjoy. She has a broad circle of friends that genuinely love her and appreciate how she has touched our collective lives. She is fully included at Byrom Elementary School in the Tualatin School District, blessed with an excellent education team and supportive friends.

And so many of you reading this article will understand the sincerity with which I write when I say, “anything is possible.” Who knows where Sydney will be in ten more years. I don’t rule out anything anymore. I do know that with a loving family and circle of friends, an exceptional educational staff working on her behalf, and the many advances of our time through instruction and technology—things look pretty good for my Sydney.

Janice Richards, Executive Director
Oregon Parent Training 
and Information Center

Student Perspectives   Top of Page
Submissions for this column may be sent to our Salem office, or e-mailed to rwortman@orpti.org
DREAMS
By Heather Schneider
My dreams consist of becoming healthy. Not all high school seniors have to deal with this, but I do. I have recently been placed on a 504 plan at school because of a diagnosis of a heart condition. Heart monitors, and blood pressure kits are a few pieces of equipment that I have become introduced to.
We were considering the possibility of surgery to try to correct the condition, but as I was getting some blood work done, it was discovered that I was severely anemic. I was hospitalized as a result of the anemia and had to have blood transfusions.
I have been involved in athletics my whole life. Volleyball, basketball and track are some of the sports I have participated in. However, my athletic involvement has come to a standstill. I am no longer physically able to do many of the activities I love. 
The school has given me an elevator key to use because I am not allowed to take the stairs due to the stress on my heart. It takes me longer to get to and from class and I have to park my car (yes, I can still drive!) close to the entrance of the school. Sometimes the kids at school that don’t know about my condition, try to pick me up and twirl me around, and it kind of scares me when my heart begins to race out of control.
This total lifestyle change has caused me to look at the world in a different light. I find myself no longer just taking things for granted. I am looking forward to college to continue my love of learning. I am focusing on becoming a nurse. I have experienced first hand, for example, how nurses can make a difference in a hospital stay. The care that they provide can be very reassuring.
I think that the results of my hospital visits, emergency room runs, numerous doctors appointments, tests, labs, needles, etc. is a way of showing me how much my future job aspirations will mean to a patient I will hopefully be able to care for one day. This is my dream!




Oregon DeafBlind Collaboration Top of Page
The Oregon Department of Education (ODE) was recently notified that the Oregon Deafblind Project has been re-funded for the next 5 years.
This project provides technical assistance in support of mandated early intervention and special education services to children and youth who are deafblind from birth through age 21. Students eligible to receive services through the Project must meet federal definitions of deafblindness: 

“Children and youth having auditory and visual impairments, the combination of which creates such severe communication and other developmental and learning needs that they cannot be appropriately educated without special education and related services, beyond those that would be provided solely for children with hearing impairments, visual impairments, or severe disabilities, to address their educational needs due to these concurrent disabilities.

Two of the five goals of the grant are met in partnership with Oregon PTI. One is to provide information, resources and training to families with children who are deafblind. The other is to collaborate with partner agencies at the local, state and national level. 
The Oregon Deafblind Project believes that families of children who are deafblind will be better served through this collaboration. We will have two wonderful parents on staff. Adriana Alcazar and Wendy White, both parents of children who are deafblind, will be available to assist families.
Adriana Alcazar was born in Guadalajara, Mexico. She moved to California with her family in 1983. She is married and has three sons. When her middle son, Adrian, was 2 years old he had a severe seizure. During his hospitalization she was told her son had both a hearing impairment and a visual impairment. Adriana felt overwhelmed. She learned quickly that she needed to be an advocate for Adrian. In 1994 the family moved to Portland. Adriana continued to be an active participant in Adrian’s educational program. She attended and participated in all

IEP meetings, used the services of the Oregon Commission for the Blind, attended Summer Institute training on the topic of transition sponsored by ODE and the Oregon Deafblind Project. 
Her hard work and the hard work of her son has paid off. Adrian works for David Douglas High School as a custodian. Adriana is so proud of his strong work ethic and his continued desire to learn.
Adriana loves children. After successfully raising her three sons, she still wants to stay involved with children. Adriana especially wants to help Hispanic families. She is a terrific addition to our Project. 
Wendy White was born and raised in the Portland suburb of Tigard. Before marriage and children, she was a highly successful businesswoman in the high tech industry. The birth of Ryan was a joyful occasion. Very soon, however, complications developed. Ryan is a handsome, charming 5 year old. In addition to his deafblindness, he has many health related issues.
Wendy says that Early Intervention made a huge impact when Ryan was 3 months old. She is concerned that many of the services provided for Ryan could be cut. NTAC (National Technical Assistance Consortium for Children and Youth who are Deafblind) housed at Western Oregon University in Monmouth was a most helpful source of support, information and resources. The Oregon Deafblind Project continues to provide support and training for the family and professionals working with Ryan.
Ryan and his younger sister Erin keep Wendy very busy. Finding a balance in spending the quality time Ryan wants and needs with the busy life of a two year old is a constant struggle for Wendy. 
Wendy is a dedicated mother and advocate for all children with special needs. She is knowledgeable in working through the bureaucracy that provides services and health care for Ryan. She wants to share what she has learned with other families. 
To request technical assistance, or for further information about the Oregon Deafblind Project, please contact: Adriana or Wendy at the Oregon PTI office, ext. 203.





Accommodations and Modifications  Top of Page

Many people are confused about modifications and accommodations. How do you know it is one and not the other? When are they appropriate? And how do you decide if a student needs one or the other? The questions are justifiable. In IDEA (Individuals with Disabilities Education Act) both terms, accommodations and modifications, have been used interchangeably, and are not well defined. 

Here in Oregon we do have definitions and rules that apply. Accommodations and Modifications are considered to be services provided directly to the student with a disability. These services are provided in the regular or special education classroom, extracurricular activities, and testing situations. Following are the definitions that Oregon uses for these terms in Special Education.


Accommodations:
OAR (Oregon Administrative Rule) 
581-015-0068
An alteration in how a test is presented to or responded to by the person tested; it includes a variety of alterations in presentation, format, setting or scheduling. The alterations do not 
substantially change level, content, or performance criteria. The changes are made in order to provide a student equal access to learning and equal opportunity to demonstrate what is known.


Modifications:
OAR 581-015-0068
Substantial changes in what a student is expected to learn and/or demonstrate. The changes are made to provide a student opportunities to participate meaningfully and productively in learning experiences and environments. They include changes in instructional level, content and performance criteria.

IEP’s and 504 Plans

Under federal laws, the student with a disability may receive accommodations and modifications that are not available to children who do not have a disability. These accommodations or modifications must be written into the student’s plan or program. Whatever is written into the IEP or 504 plan must be provided. It is important to plan carefully when choosing accommodations or modifications. A general rule is to always consider using accommodations before modifying. The team will also want to know in 
advance what impact, if any, the modification will have on the student’s graduation status. 

Statewide Testing 

When students are taking the statewide assessment tests, accommodations are available to ALL students. Accommodations do not change what is being tested. All accommodations and modifications need to be listed in the students IEP as a guarantee that it will be provided to the student. Each administration manual has a list of accepted accommodations and modifications. 

If a student uses a modification on a statewide assessment, then the score is considered invalid, and won’t count for the student as meeting the benchmark, or CIM. Since accommodations do not effect the validity of the test, scores using accommodations are considered to be “standard administration”.

Accommodations and modifications don’t have to be confusing or intimidating. Proper consideration and information help teams make the appropriate choice for each student.

References: 
Oregon Department of Education, Oregon Parent Training and Information Center, Training Manual, From Emotions to Advocacy: The Special Education Survival Guide – Pam Wright, Pete 




Peer Mentor Program  Top of Page

Peer Mentor 
Transition Program

An exciting new program of the Oregon Parent Training and Information Center: the Peer Mentor Transition Program is designed to assist youth in their transition to adulthood and to work toward their goals and dreams.

Our Vision:
We believe all students have the right to become successful adults. Students with disabilities will make their own decisions and guide their lives on paths of their own choosing.

The Objectives include:
· to empower students with disabilities
· to develop leadership skills in youth
· to disseminate information on self-advocacy 
· to understand transition to adult life
· to follow dreams and develop realistic goals
· to have other students develop an understanding of disabilities


Currently, we have a workshop developed and would like students/young adults, ages 16 – 26 to be part of our panels. These young people will be sharing their goals/dreams, a little bit about themselves, what have been the barriers to their goals/dreams, how and who have helped them reach and move towards their goals. There is a small stipend available to panel members. Our goal is to have: 3-4 panel members with different disabilities share at each presentation site. 

We need your help -- we are currently recruiting young adults who would be interested in participating in these presentations. We are looking for presenters from all around the state. If you, or someone you know may be interested please contact, Judy Rinkin, Peer Mentoring Program, 541-928-3611 or e-mail: jrinkin@orpti.org. This is an exciting program for our youth and an opportunity for new growth and development.

Thank You  Top of Page

We would like to thank the 
following people for their 
generous donations to Oregon PTI:

Roberta Adrian
Kris Alman
Jose & Melissa Astorga
Joan Ausubel
William and Delphia Baechler
Harry & Rebecca Bither
Nicholas & Valerie Cannard 
Elizabeth Caplan
Stanley &Doris Caplan
Timothy and Nicole Cleary
Juan and Maryann Elguezabal
Dolores Emery
Melanie Gangle
Roberta Gesch
Cheeri Glenn
Russell & Linda Graham
Kenneth & Jane Gravel
Darin & Donna Helman
James & Janelle Hetherington
Devon Himelfarb
William & Lisa Hislebeard
Patrick & Pearl Ireton
Joe & Gayle Knight
William & Cheron Mayhall
Gregory Meredith
James & Debbie Renoud
Eric & Janice Richards
Debora Richards
Donald & Geneva Richards
Michael & Judy Rinkin
Michael & Kathleen Ripplinger
Jack & Sue Roberts
Nancy Rushmer
Daniel and Lani Snyder
David & Lori Sours
Wendy Stebbins
Robert & Arnella Stelle
Michael & Debra Lynn Trusheim
Richard & Trisha Wilfong
Ellen Witham