Aaron, Tom and I made our get-away-from-moving trip was to Clifty Falls State Park in Indiana. The weather was perfect, the ride up the Ohio was perfect, Aaron was perfect. Whew!
When your child has a severe disability and doesn’t talk with words, you look for ways to measure his happiness and enjoyment by other non-verbal signs.
Over the years, Tom and I have decided it is by the number of times Aaron crosses his leg.
I caught two on film (do they still call digital, film?)
Check it out:
Aaron\’s reading and watching Bengal game in community room
NOTE: I’m congratulating myself for figuring out how to download, edit and post my pics in under two hours. I’m a slow learner, but I’m learning. Now, with another hour or so, I might be able to figure out how to put the pictures side-by-side. Or not?
More about the trip tomorrow in Smokey the Bear and Aaron.
Keep Climbing: Onward and Upward.
All the Best,
Check out my challenge partner Alison Golden of The Secret Life of a Warrior Woman: (click here)
Where do you like to go to get away?
How do your children communicate without words?
The Inclusive Class Podcast presented a panel with Tom Mihail, Paula Kluth, Torrie Dunlap, Lisa Jo Rudy, Frances Stetson, Kathleen McClaskey and myself.
The Title was: “When Schools say ‘NO’ to Inclusion”
Topics include Universal Design, Technology, Differentiation, Inclusive after-school and community recreation, and in the last few minutes I talked about Inclusion as a Civil Right and strategies for getting inclusion with your IEP.
Below is the supplemental material for my topic. If you have any questions please contact me.
So, you are sold, you have heard all the information about inclusion, you know in your soul this is what would be great for your child. You talk to the teacher, the principal, anyone who will listen and they tell you it won’t work for your child, it’s a passing fad, it is too expensive, it will hurt the other kids in the school…blagh, blagh, blagh.
What do you do?
Here are the 5 Points I outlined in my part of the panel:
1. Learn the History of People with Disabilities.
Society and Schools have been saying “No” to Inclusion for hundreds of years for many people, not just for people with disabilities.
1800-1900s. Institutions and Forced Segregation were common for those with the labels of mentally defective, feeble-minded, idiots, uneducable and untrainable. Individuals and Parents had no say. People who were different were removed for the health and safety of the community.
Today we still have prejudice against minorities, young women who are unmarried and pregnant, gang members, young people who are gay or lesbian, immigrants, poor, people who don’t speak English, Native Americans, homeless, children of migrant workers…
Our society is more diverse every day, we need inclusion for everyone.
Parallels in Time: A history of people with disabilities
“The 14th Amendment to the Constitution was ratified on July 9, 1868, and granted citizenship to “all persons born or naturalized in the United States,” which included former slaves recently freed. In addition, it forbids states from denying any person “life, liberty or property, without due process of law” or to “deny to any person within its jurisdiction the equal protection of the laws.” By directly mentioning the role of the states, the 14th Amendment greatly expanded the protection of civil rights to all Americans and is cited in more litigation than any other amendment.”
Citizenship: Is someone who has an intellectual or other disability, a person? (consider the slaves, Native Americans, women, immigrants, prisoners…)
Due Process: If you have a disability, do you have the right to due process? (consider people with physical, intellectual disabilities, people who are deaf, blind… can’t read/write/talk, people who can’t pass IQ tests…)
Equal Protection: If you have a disability, are you entitled to the same rights and benefits other people have? (go to school, live in community, get jobs…)
Consider the implications:
Plessy v. Ferguson (1896) Separate is equal. 50 years of Jim Crow Laws.
Brown v. Board of Education (1954) “Separate is inherently unequal.”
Testimony of Tom Gilhool before the Joint Subcommittee Hearings on “the Events, Forces and Issues that Triggered Enactment of the Education of All Handicapped Children Act (EHA) of 1975” in TASH newsletter, 1996 p. 11-15.
Excerpt about PARC decree and 94-142: Teacher Training and Best Practice
The Requirement that Schools Know and “Adopt” “Effective” “Promising” Practices. Requires the delivery of an “effective” education. One, the Act (EHA) requires states and districts to see to it that all teachers, both “regular” and “special” are fully informed of and continuously trained in “promising practices” in the education of children. “Second, the Act requires every district as well as the states to “adopt promising practices’ Third, the Act’s requirement of “a free appropriate public education has been help by the Unites States Supreme Court to mean an education “reasonably calculated to enable the child to achieve education benefits”
Hudson v. Rowley, 458 U.S. 178, 203-04V (1982).
NOTE: Remember to NOT just look at the current regulations, go back into the Congressional Hearings before each law was enacted, the legislative history, court cases…
Other Court Cases:
“Inclusion is a right, not a special privilege for a select few” (Federal Court, Oberti v Board of Education).
You will want to quote the most relevent and recent cases.
Focusing on the dignity and goodwill of the people you’re working with. Build trust. Create a common vision.
Partners in Policymaking has programs in almost every state. The courses are designed for parents of young children and self-advocates. New groups start every year and are usually funded by your state DD Council. On the Partners website, find your state liaison.
NICHCY has a list of organizations and Parent Training Centers in each state. Find people both on the National, State and Local level who think like you do and can help.
National Organizations for Professionals often help parents and teachers. TASH helped me. I know the ARC, United Cerebral Palsy and National Down Syndrome Association have done advocacy work. I’m sure there are others.
Check out your local university. Sometimes you can find a professor or student who can help.
In our particular situation, because no group existed-we started a parent group in our local school district.
Set group goals: start an extended school program in the summer; make the buildings more accessible with universal design; start an after school Job Club and Key Club at the high school. By focusing on specific goals we were able to get local grants, publicity and see tangible results for our children.
NOTE: In hindsight, I would have made this an ad hoc committee of the School PTO or General Education Parent Organization. I would ask parents and teachers of general education students to be on this committe so it is inclusive. 20 years later, duh, it is so obvious.
The first part of the IEP process is getting evaluations of current level of functioning and setting specific individual goals.
Be creative. Don’t let the school psychologist run the show.
Have your IEP team decide what kind of evaluations they need in order to have your child make educational progress in all the school environments.
There are the formal evaluations that are the traditional testing tools of the experts. And, there are the individual informal tools also designed by experts, but cannot be standardized and put into multiple choice answers.
1. Person Centered Planning, Circle of Friends can supplement the formal evaluations and look at social relationships, before-during-after school-weekend-summer activities, this can also be used for team building, communication, transition and long term planning.
http://inclusion.com/ Where inclusion began, great tools.
2. Educational Evaluations
Educational Evaluations are usually conducted by a teacher or other educator with the appropriate teaching license.
Educational Evaluations look at an individual person in their life spaces. Aaron’s evaluation started in his home, followed him on the school bus, in the classroom, in the lunch room, bathrooms, gym, after school activity and back home. The evaluation compared Aaron’s current level of functioning in each environment and then made suggestions for IEP goals.
For instance, the educational evaluation shows the “individual benefit” for Aaron. Not the whole class or school, just Aaron.
The Educational Evaluation determined Aaron, with accommodations and related services, could be in an inclusive class. What supports would he need? What supports would the teacher need? How would the curriculum be differentiated? What technology? Universal design strategies could be used?
See the difference between this sort of evaluation and a traditional IQ or standardized test?
The tricky part is that if the parent pays for the evaluation, and chooses their own “expert,” then the school district only has to “consider” the recommendations.
If however, (at least this is how it used to be), if the parents or teacher ask for an evaluation, and the school district agrees to pay for the evaluation, then they have to use that evaluation to develop the IEP, or if they disagree, they have to get another evaluation saying the first evaluation was not appropriate, and why.
If you go to court, the educational evaluation can make all the difference. If you are writing IEP goals, the educational evaluation gives you a practical starting point for goals and objectives. (The conversation is NOT about “Should we do this?” but rather, “How do we do this?”)
And, if the parent does pay for the evaluation and “prevails” in a due process hearing then the school district has to pay. Of course, it goes both ways and is risky because if the parent loses, then the parent has to pay.
How do you find an expert?
In our due process hearing we used our contacts from TASH (a national organization) and one of Lou Brown’s graduate students from the University of WI-Madison. This process was repeated several years later when Aaron was in Junior High, and again when Aaron graduated.
We also used local university graduate students and county respite providers when appropriate, ie. They did independent studies to help us design an after-school program and going to the prom.
If you are going due process, find out who the expert is in the area you are challenging.
Check out professional organizations, journals, university faculty. Who is going to know how to do the job? Who is willing to testify? Who will impress the hearing officer?
5. Be BadAss Confident
Know what you believe and how far you are willing to go.
Even if you are uncertain, typically shy and withdrawn–you have to act fearless.
This is your child, This is your class, the time is NOW!
When people see you walking in the grocery or in the school you want them to see you and immediately know what you stand for: “All means All”—“Inclusion means Belonging to the Community.” You have to model what you want others to do.
Build trust, convert the doubters. It can be done–and it’s up to you. And, you will join the thousands of other parents and advocates who have made a difference for one child or many and have moved history and inclusion forward.
Segregation and Inclusion by Zip Code
In my opinion, this is why we need a national policy, federal laws and oversight.
Vulnerable people with disabilities and other minorities should not have to reinvent the wheel, every year, in every city and county.
Do we want individual states and school districts to make decisions about segregation and inclusion?
Would you want to live in Mississippi, Alabama, Louisiana… and I include Ohio?
Different school districts have different definitions of inclusion. I recently visited what was called an “Inclusion School.” To my shock, the principal proudly told me, “Inclusion means EVERYONE in the school is on an IEP.”
After we won our due process hearing, we moved to a neighboring county where the school district shared our values.
The move was the best thing we ever did.
First, after we won our due process hearing, it was like Aaron had a tatoo on his forehead that said, “Don’t mess with me.”
Our reputations guaranteed they took us seriously.
Second, I got elected to the County Board of Developmental Disabilities. One of the proudest days of my life was when I got to make the resolution to close the segregated county school.
Third, because the school district was good for Aaron, it was also
an excellent school district for my other son who had the label of “normal.”
Bottom-up; Top-Down: Baby Steps
You can achieve Inclusion from the IEP process: bottom-up.
But it is easier to work from the top-down.
Try to get on influential committees, or find allies in leadership positions that will work for inclusion. If your school board and/or school administrators embraces the Inclusion paradigm, and understands how this will be better for all students, then you are well on your way.
Try to get inservice for staff, parents—both general and special, about inclusion, differentiated instruction and universal design.
I like to think of a yard stick. On the one end is segregation, on the other is inclusion. If I think an action, a decision, anything… is a step in the direction of inclusion–I accept it. There is always tomorrow.
Celebrate each small victory. There were many times when I had to take a deep breath and tell myself, “This is the best we can do today. Be happy.”
If everyday ALL children go to the same schools, get to know each other on a personal level, share time on the playground and lunchroom and bus and in the classrooms–there are valuable lessons in just being together with people who are different than we are.
And maybe one of the lessons is–we are not so different–inside we are the same.
What do the history books say?
In the late 90s, I was teaching education majors who wanted to be teachers.
I took my Introduction to Exceptionalities classes to our university library which had a collection of textbooks being used in classrooms all over the country.
Their assignment was to examine one of the high school textbooks in American History, Problems in Democracy or World Histories and look for pictures or references to people with disabilities. Many of these college sophomores were able to find the same textbooks they used when they were in high school.
Out of the 20 different textbooks they evaluated, no textbook had more than four references to anything about disabilities.
The references, in a sentence or two, referred to:
Helen Keller was deaf and blind and traveled in the Wild West Show, President Roosevelt used a wheelchair, and the American with Disabilities Act passed in 1990. In several of the textbooks, an additional reference said, “deinstitutionalization caused many people who were mentally ill to become homeless” with a picture showing a man sleeping on a park bench. That was it! And the last message was not positive.
People with Disabilities are often Invisible People
People with disabilities have been basically excluded and invisible in the traditional curriculum.
In a culture that asks its children to “not stare,” and “beware of strangers” we have taught our children to ignore and avoid people with disabilities. Many churches only teach about praying for miracle cures and giving charity and alms to the “handicapped” (word from “cap in hand”). So, though there has been some progresss, it is not surprising our textbooks still avoid the whole conversation of disabilities and differences.
The increase in college “Disabilities Studies” majors and minors across the country is a strong beginning and step in the right direction. Kudos to those who are pioneers in this new movement. The recent Tribute to Ed Roberts is an example of people who care recognizing the contributions of great Americans to the freedom and inclusion of all.
Yet, I would bet if we repeated this textbook assignment today in 2013, there would still be a scarcity to references about people with disabilities and of all minorities; though I think the textbook companies are responding to some of the criticism.
What is the purpose of education?
So besides becoming informed citizens, what is the purpose of education, except to prepare each of us in the attitudes, vocational, domestic, community, and leisure skills we need to function successfully the 50-60-70 years of the rest of our lives?
How can we learn to make choices? To learn to ask questions? To learn to solve problems? To learn to work and live together? To learn about ourselves, our ways of making sense of the world? To learn about diversity?
Would our government officials act differently if they followed Thomas Jefferson’s ideas on education? If they went to school with people who had disabilities or had differences?
Schools and Parents
One teacher, one therapist may be great for a year or two but professionals come and go. The parent is the constant in a child’s life. We know our children the best and are the experts on our child’s likes and dislikes, their learning styles and behavior in the home and community. We know our child’s history better than any psychological profile that sits in the school office. We know our child is more than the words on their Individualized Education Plan (IEP).
Our role as parent is a difficult one because we represent the continuity of our child’s life. We know their past, we are part of their journey. But are we willing to risk our children learning about diversity and differences?
There are many parents of children with disabilities who are afraid, it is understandable, but will that fear hurt our children and the next generation of citizens.
Each day parents are challenged as “care managers” to insure cooperation and creativity among those who provide service to our children.
Each day, as our children climb on the school bus, they are a step closer to being adults. They step on the magical bus into their future and the future of our country.
Each day, we must ask ourselves: “Are the skills they are learning going to prepare them to become productive adults, caring and responsible citizens?”
Magic Bus Ride?
The school year is a precious opportunity for new growth. An opportunity to forget the hurts of the past, no matter how difficult. A new school year is a fresh start.
Build that future dream with much hope and picture the magic bus that can take you and your child into a year of wonder, new adventures and new learning in a land of diversity. We learn from our children and they learn from us, and that is also magic.
Wishing you a great year full of magic.
When you were in school, how did you learn about people with disabilities, differences? Do you think there are things to be learned by sharing your lunch with someone who doesn’t talk with words? With someone who uses a communication board to talk? With a classmate who learns differently? With a friend who just happens to have a label of disability?
Many people have a hard time understanding the concepts of independence vs. interdependence, inclusion, multiple intelligences and cooperative learning. I thought a revision of The Animal School by George Reavis might explain it all.*
THE ANIMAL SCHOOL
Once upon a time the animals got together and decided to start a school.
The parents and teachers wanted to make everything FAIR, so they decided ALL the animals would take ALL the subjects. No exceptions.
The curriculum consisted of classes in swimming, running, flying and climbing. Each student would need a grade of C to pass. There would be a competition to see who could get the best grades.
Doug the duck was excellent in swimming, in fact, better than his instructor. But Doug made only passing grades in flying and was getting Fs in running and climbing.
At a team meeting, it was decided he needed to drop swimming and take remedial classes to practice running.
This continued until Doug the duck’s webbed feet were badly worn and he was only average in swimming.
But average, or C, was acceptable in school, so nobody worried about that—except Doug and his family.
Rene the Rabbit started at the top of her class in running. But she soon had a nervous breakdown because she was failing in climbing and the others made fun of her in flying and swimming classes. She passed the standardized tests but the last day of class she buried her books and said she would drop out.
Sam the Squirrel was excellent in running and climbing. He also had high marks in flying until the teacher read a research study that said everything should be taught from the ground-up, not the tree-top down.
Edward the eagle was the problem child. He bit the other animals in running class. He perseverated on flying. In the climbing class he insisted on using his own way to get to the top of the tree. After several discipline meetings, it was decided his diving into the river for fish would count as swimming credit. He was considered a loner with no friends. “He just keeps flying off,” the teachers complained and suggested he be put in special education.
The chipmunks were excluded from school because they could not pass the prerequisite swimming tests. They protested and demanded digging and burrowing be added to the curriculum. This caused hot debate among the parents and students. The rabbits and squirrels thought digging and burrowing should replace swimming. The ducks thought there should be better discipline and a subject on following the leader.
Even though he got a D in flying, one frog won the student competition and was valedictorian. All the students and their families were unhappy.
Further, the chipmunks boycotted school board meetings and joined the groundhogs and snakes to start a charter school.
Once upon a time the animals got together and decided to start a school.
The parents and teachers agreed that if the purpose of school is to learn the skills required AFTER graduation, then the students needed a course called “Survival 101.” The school would be at the pond, because that was where they lived.
The school board announced, “Our common survival depends on learning to live interdependently in our community. Lessons need to be differentiated according to each student’s learning styles, gifts and talents.”
The parents and teachers wanted to make everything FAIR, so they decided ALL the animals would have Individualized Education Plans with curriculum goals and objectives.
The teaching methods would be functional activity-based projects which stressed cooperation and problem solving. “Safety at the pond,” was the thematic unit.
There would be individual goals and objectives and each student would work hard, improve on the skills they have, and contribute their talents and strengths to the group project. The stress would be on cooperation and interdependence, rather than competition and independence. There would be no bullying or fighting.
Doug the duck was excellent in swimming, in fact, better than his instructor. Duck was also gifted at getting animals to follow in line.
At a team meeting, it was decided Doug would help supervise all water activities and be the project manager. Doug the duck was excited to be given leadership activities. His goals were: to improve his dive, his endurance swimming across the lake; his life-saving safety skills; and, learn to give specific directions to get the younger ducks in a row.
Rene the Rabbit was a great runner and jumper. Since she was close to the ground, she was in charge of everything on the earth’s surface. She would learn to: identify animal tracks, and, alert squirrel if needed. Because Rene was worried she wouldn’t be able to do her best job, Eagle offered to mentor her.
Sam the Squirrel was excellent in running and climbing. He volunteered to be the lookout and guardian of the trees and wildlife. His goals were to develop safety plans in case of danger. He would run messages, organize safety drills and practice his alarm calls. To help Sam learn to stay on task, he would also be the time keeper at all meetings.
Edward the eagle was excited he could fly. Doug the duck, the project manager, asked him to survey the pond from the air. He wanted Edward to use his “eagle eyes” to scout for trouble, trespassers, pollution, and any animals in trouble. Eagle’s short term goals would be to learn about weather, air pressure, rain and wind.
The chipmunks, snakes and groundhogs were welcomed in the school. They became a part of the community. They gave digging and burrowing tips to squirrel and rabbit. When a fallen tree threatened to block the water flow, they helped dig a channel.
In the course of the year, Doug the duck saved squirrel when he almost drowned. Eagle saved Duck when he got caught in the ice and almost froze. Rene got enough confidence that she wants to be the project director next time. Sam raised the alarm when a group of Girl Scouts came camping and thought it would be fun to catch animals and dress them in hats.
Because all the animals cooperated and learned together, their pond community was a happy and safe place, each animal was respected and valued for their contribution, and, everything was FAIR.
Instead of one standardized test or grades, each animal had gifts, they all survived, learned new skills, made new friends, and could celebrate the true nature of community: interdependence and inclusion.
Does this fable have a moral?
Keep Climbing: Onward and Upward
All my best,
Please add your comments:
Do you know any Dougs, Renes, Sams or Edwards?
Do you know any students who are excluded and asked to go elsewhere? Are the students treated like individuals? Is the curriculum differentiated? Does everyone feel happy, safe and like valuable members of the community? Are students encouraged to build on their strengths and talents or does everyone have to learn the same things in the same ways? Are the students learning skills that will help them in Survival 101 after graduation?
*Like my husband, George Reavis taught in Cincinnati Public Schools. The original The Animal School was published around 1940 in The Public School Bulletin long before inclusion was even a dream–or was it?