Posts Tagged ‘Disabilities’

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Check out the graduation pictures of my two sons.

What’s the same? What’s different?

BACK to SCHOOL Article 3

To celebrate the new school year here are some of my favorite posts:

Article 1: Why Do We Go to School?

Article 2: Back to School| A New Year of Learning

What is Inclusion?

The concept of INCLUSION is both simple and complex.

It means being able to go to the same school your brothers and sisters go to. The same school that is on the realtor’s fact sheet, you know the one: “If you buy this house, here is the neighborhood school you go to.” That’s simple, right?

In 1980 in Ohio, when my son Aaron turned 5 and was eligible to go to school, because he had the label of autism and developmental disabilities, he and other children with IQs below 50 were legally excluded from public schools. That’s complex.

It all changed because of Federal Legislation, yea those dang Government laws everyone hates.

When you suffer from exclusion and segregation, those Federal rules and regulations save the day.

History Lessons: Past

When new schools were built in the 50s-60s-70s-80s, the white schools became “negro” schools. When even more new schools were built for the white children (think baby boomers), then the children with disabilities were moved up into the schools vacated by the “negroes.”

Schools: White to Negro to Handicapped to Demolished

The Education for All Handicapped Children Act was passed in 1975 and gave parents the right to a free appropriate public education, zero reject, related services, due process and the “least restrictive environment.”

At the time of the Neill Roncker and Aaron Ulrich due process hearings, the decrepit Dyer School was a handicapped-only school. Cincinnati Public Schools rented the school to the Hamilton County Board of Mental Retardation/Developmental Disabilities for $1.00 a year (Roncker hearing).

Parents and local Board of Mental Retardation officials were happy to be able to move out of church basements into the discarded school. They were also thrilled to be building new segregated facilities, handicapped only, with local levy dollars.

That was our court battle–to be able to ride the bus, go to school, eat lunch with typical kids… in our neighborhood school–not a “handicapped-only” school.

Inclusion is a civil right

“Inclusion is a right, not a special privilege for a select few.” – Federal Court, Oberti vs Board of Education.

For information about the history of children with disabilities check out the Minnesota DD Planning council’s excellent resource, Parallels in Time 2

History Lessons| Inclusion Today

Here is a recent video about a young woman with the label of autism. You will see her general education teacher, her parent, her inclusion facilitator, the general music teacher but most of all you will see the future citizens of our country.

Here is a picture of inclusion. A picture of hope. (Thanks to Donna Owens, OCALI)

Thaysa from Dan Habib on Vimeo.

Definition of Inclusion

Giangreco (see Resources) has defined the criteria for inclusion:

Students go to the same school as their brothers, sisters, and neighbors;

They participate in the same environments as their peers (lunchroom, bus, playground, classrooms);

According to their IEP, the student has the extra supports they need to be successful (therapy, adapted curriculum materials, an aide, teacher inservice);

There should be a natural proportion of children with/without disabilities, (if 10% of students are on IEPs in a school–no more than 10% of the students in any one class should be on IEPs).

An Inclusive Graduation Ceremony

So did you see any similiarities and differences in the graduation pictures above?

Almost everything about Tommy and Aaron’s Graduation ceremonies were the same. At the time, Lakota High School was one of the largest high schools in the state. Tommy and Aaron both had HUGE graduating classes held at the University of Cincinnati. Both had cheering parents and friends.

The difference between Aaron’s school experience and his typical brother Tommy’s, is evidenced in their graduation pictures above.

Aaron didn’t have to go through a segregated graduation ceremony and earn the right or prove he was ready to go to the inclusive celebration.

We did prepare by considering what would Aaron need to be added or subtracted from the typical graduation experience.

In his case, Aaron needed an extra support person, his wonderful teacher Mr. Mike Valdini. And, what needed to be subtracted–the mortar board hat!

I like to think our early battles for inclusion help the young children today—all of them, with and without disabilities.

Keep Climbing: Onward and Upward

All my best,

Mary

Comments:

It now seems like the concept of inclusion has been around forever. But like any civil rights movement, we often don’t move forward in a straight line. What are some of your experiences?

Related Posts:

The Values of Inclusion from Down Under

Down by the Ole Mainstream

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This is Part 2 of a 3 part series:

Going to the family reunion, or not? Part 2: The Circles of Life

See Part 1: Going to the family reunion, or not?

See Part 3: Going to the family reunion? Shave your armpits.

The Circles of Life

We’ve all heard the quote about how the most important thing on our tombstone is NOT the date of our birth or the date of our death. The most important thing is the dash—what we did between the two dates. Our birth to death time-line is not just linear.

Our World View is Unique

We live in complex interrelated systems which give us a unique lens to view the world:

*the individual,
*our nuclear family, our extended family and friends
*our local community professionals (bus drivers, barber, doctor…)
*our organizations (churches, clubs, schools…)
*our beliefs, culture, government, and our world

Uncle Ed

My Uncle Ed was one of the most inspiring people I ever met. In our Archdiocese, he served as a priest in several of the poorer parishes. One Sunday he was actually robbed and shot for the money in the collection plate—definitely not the best neighborhood. When he could have retired, he became a missionary in Grenada where he built a school, a nursing home, and two churches. He loved everyone including those marginalized by society: people who were sick, poor, had disabilities, the young, elderly, prisoners… everyone. Always, he modeled commitment and used his special gifts of humor and basketball to spread the word of God. Another thing Uncle Ed did was lead the songfest at each family reunion.

In part one of “Going to the family reunion, or not?” I talked about preparing BEFORE going to the family reunion. Today, I want to talk about systems theory. I thought about going straight to chaos theory because if your family is anything like mine, chaos rules the day… but systems theory actually helped me make sense of the circles of life.

Bronfenbrenner’s System Theory

In a systems theory perspective each individual is in a dynamic and interconnected relationship with other people and environments.

Resource: Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard University.

Picture nested Russian dolls where one fits inside the others. In Bronfenbrenner’s social system theory the smallest system is an individual person. But everything is connected; what influences one circle influences all the others. The circle of our family’s culture, traditions, likes, dislikes all influence who we are and what is valued. It is as important as the common blood or DNA.

The Micro System

Each aunt, uncle, cousin, grandchild in my family has their own experiences and beliefs about people who are different. Based on their ages and backgrounds they could have few or many inclusive experiences. Fortunately, Aaron is a part of the family, because of his blood, he belongs. They try to see the good things in Aaron, my son who has the label of autism. When we get together for family gatherings, they each try to fit Aaron into the environments and accommodate his needs.

Some of my cousins are teachers, counselors, business owners, nurses… Some work with people with disabilities in a professional capacity while others have had personal experiences with people in their communities. My sister recently had some hip surgery and applied for a Handicapped Parking permit–as we are all aging, we are all starting to understand the ramifications of being “temporarily able bodied.” Each individual and each family member shares those common experiences, but just as I am learning about growing older from my seniors and elderly relatives, many are learning about inclusion from Aaron.

Macro System

Considering people with severe disabilities have suffered abuse, neglect, and been ostracized from their family (tribe) being given the opportunity to participate with the family is a gift. I am thankful. I also hope we give positive modeling of what to do, how to act, how to accept others who are different.

Most of my relatives go out of their way to try and help Aaron in the swimming pool, bring him a drink, and help wipe up a mess if he spills something–instead of blaming him. I think some of this was learned from my Uncle Ed.

Uncle Ed always “Got it.” He was a pioneer for inclusion before inclusion was a word. At our family reunions Uncle Ed always brought people from the neighborhoods where he was pastor. There would be kids of all different religions, races and cultures. He was teaching about diversity as we all got in line for the potato salad and hot-dogs, as sure as he was teaching about God and God’s children. When Uncle Ed led the traditional singing, we didn’t sing special religious songs only our family would know, we sang camp songs where everyone could join in: “The bear comes over the mountain” or “The food in the army, they say is mighty fine” and school fight songs.

Uncle Ed was teaching about inclusion, about belonging and the power of a face to face connection. And he lead the way to change attitudes through his embedded social systems.

The last song before the picnic ended was always, “He’s got the whole world in His hands.” Uncle Ed never offered to lay his hands on Aaron and ask for God’s cure. He never tried to “counsel” our family about accepting God’s will. He never gave a sermon on how Jesus cured the blind man. Never once did he tell me I was chosen.

But like Tom, Tommy and I were trying to model, Uncle Ed just accepted Aaron the way he is, saw his beauty and gifts. Didn’t try to change him or us. In the many choruses of “He’s got the whole world” we joined hands and sang about how “He’s got the mothers and the fathers, the sisters and the brothers…He’s got the little bitty children… and He’s got Aar-on in His hands, He’s got the whole world in His hands.”

I know sharing pictures and snapshots of family reunions is boring as can be, but I hope this story shows why our family and extended family are such an important part of who we are. I am so thankful Uncle Ed was a part of my family, a part of my social system. I am hoping my family will also say the same about Aaron.

What about your Circles?

Does systems theory make sense to you? Who are the people/groups/clubs in your circles? How do these impact your life?
Tell us about your social systems, how is your family changing?

Keep climbing, onward and upward.

All the best,

Mary

Tale of Two Brothers: Sibs of People with Disabilities

It was the best of times and the worst of times. (Sorry, couldn’t resist.)

All boys and girls grow up into adults. If the statistics are correct that one in 88 children now have the label of autism–that’s a lot of brothers and sisters.

The cute little brothers on the hiking trail grow into … what?

Can the brothers and sisters of people with disabilities, including autism, stay close and involved in their sibling’s life? How does it change over time? Can anyone have a “normal” life?

When we first suspected something was wrong with Aaron we went to the neurologist and began tests. We told him we were thinking of having a second child and he said, “Great, Aaron would love to have a brother or sister.” The tests took 6 months and fortunately for us, we were already pregnant when the neurologist told us Aaron would, “always be in special schools.” (which was his way of saying Aaron had cerebral palsy and was severely retarded–though we didn’t know what he meant.) Tommy is 18 months younger than Aaron who later added autism to his list of neurological labels.

I can’t imagine our lives without Tommy. I think God knew our family needed him to help us get through the rough spots. He is a very thoughtful quiet guy, who is one of the most caring people on the planet. He is also a terrific problem solver and continues to be such a source of joy and support to Aaron and all of us.

In this picture (Aaron 10 yrs) and Tommy (10 yrs) pose on one of the hiking trails in the Great Smoky Mountains. Sometimes our whole family would go on the hikes, sometimes Tommy and his dad, Tom, would go and spend a couple nights on the trail while Aaron and I stayed in the basecamp.

Thankfully Aaron let me use him for an excuse so I wouldn’t have to hike 10 miles up the mountain, sleep on the ground worrying about bears, and shovel the … you know. Sometimes it was just Aaron and me roughing it in the camper with running water and toilets that flushed. Sometimes my dad or sister Janet joined us at basecamp. It was always a great family adventure (click here).

Tommy has always been involved in Aaron’s life. Until he went to college, they went to school together and were involved in some extra curricular activities together. He certainly had his own friends and activities, but Aaron was involved in his life if it was cheering at his baseball games, watching him play video games or build stereo speakers….

In the last several years Tommy’s job, as a radio frequency engineer, has taken him to South Carolina, North Carolina, Pennsylvania, Virginia and D.C. (Did I mention he was in charge of setting up the cell phone operations for Nascar and the Super Bowl?)

He recently moved his family back to Cincinnati and is now living between Aaron’s house and our house so we get to see his family almost every week.

Because Tommy has grown up with Aaron, he knows what Aaron likes and dislikes–sometimes even better than mom.

Tommy invited us all to his house yesterday and his wife Ana fixed an amazing dinner. Isabella (1 year) was climbing on Aaron and making him laugh.

Dignity of Risk

Tommy is now an adult who understands the “dignity of risk” (click here) and lets Aaron share his life with his family. Notice that while Aaron is pushing Isabella in the stroller, Tommy is hiding in the bushes making sure everything is okay.

Aaron can independently push Isabella and talk to her (why she was looking at him). He is using his skills. But Tommy is close by. Isabella enjoys her ride with Uncle Aaron and is safe.

I could not have planned for this special moment. I did not have a lesson plan or task analysis. Tommy just figured it out.

What a great brother.

LIFE IS GOOD!

I want to share two stories about brothers and sisters of people with disabilities that have been in the news.

Sister “Deebah” makes a video about her brother

The first video is by Brooke May, a young girl who has a brother Jonathan, with the label of Down syndrome. Let me know your thoughts in the comments, but I see a loving relationship and a sister who reminds me of Tommy.

Time magazine article by Noah’s Brother

The second story is an article in Time by the author of Boy Alone: A brother’s memoir (Harper). It is written by Karl Taro Greenfeld who’s father wrote the famous book, A Child Called Noah. It is fascinating to follow this family’s journey into the second generation and the adult world. This article points out some of Noah’s history and does not have the miracle ending we all wish. It suggests the way to survive is to live in the present. It also hints at some of the experiences the author experienced in the past and now in his role as advocate and caregiver for his brother. It is a sober message. Again, please share your comments below.

I love the title! “Growing Old with Autism” (click here)

Another Quote:

I remember reading an article where one brother of a person with a severe disability said, “Growing up was like being an only child, with a brother.” When I asked Tommy about this, he was very thoughtful and just nodded.

Comments Welcome

What do you think? Do you have any stories about brothers and sisters?

Keep Climbing–Onward and Upward

All the Best,

Mary

Today I will be interviewed on The Inclusive Class on Special Needs Talk Radio on the topic: Successful Inclusion.

This is the third interview in their series on Inclusion. The interview is about 20 minutes long. I hope you will leave comments here, talk to your friends and use your social media to spread the word on Twitter, Facebook, Google Plus, DIGG….

My Brief Biography:

Like many people, I began my journey into Disability World when Aaron, my oldest son, received his first label of autism and intellectual disability because he didn’t reach the developmental milestones.

Fortunately, Aaron was born right as PL 94-142 (The Education of All Handicapped Children Act—the precursor of IDEA) was passed. He and Neill Roncker were the first students with severe disabilities to go to Cincinnati Public Schools. Neill’s case (Roncker v. Walter) went all the way to the Federal Supreme Court, ours was resolved locally because the school district didn’t want a class action lawsuit.

I was fortunate to learn about inclusion from the people at TASH (Equity, Opportunity and Inclusion for People with Disabilities–formerly The Association for Persons with Severe Handicaps).

Most of my life was spent as a mom and advocate. When Aaron moved into his own house, I went back to school to get my masters and doctorate degrees in special education at the age of 50. I taught at Miami University and am still fighting the good fight for adult inclusive services for my son who is now 36 years old.

We’ve had some success stories that warm our hearts, and we work every day to make Aaron’s life more inclusive. We are currently working to move Aaron closer to our home.

Questions:

1. Roncker v. Walters was the first court case under the Education of All Handicapped Children Act to go to the Federal Supreme Court about the Least Restrictive Environment. What effect did it have on what we now call inclusion?

Neill Roncker and my son Aaron both lived in Cincinnati Public School District. Neill was a year older than Aaron.

In the 70s, Ohio had a policy that children with IQs below 50 were automatically excluded from the public schools and sent to the segregated schools for children with severe intellectual disabilities. It took several years, but finally the Federal Supreme Court ruled Neill could go to public schools and services must be PORTABLE.

“In a case where the segregated facility is considered superior, the court should determine whether the services which make that placement superior could be feasibly provided in a non-segregated setting. If they can, the placement in the segregated school would be inappropriate under the Act” (Roncker v. Walters 700F.2d 1058 6th Circuit).

For instance: if the segregated school provided speech therapy, that same speech therapy could be portable and provided in a public school.

Since Roncker there have been many cases on “mainstreaming,” “least restrictive environment” and “inclusion.”

The court sometimes makes conflicting decisions, but the bottom line is the decision must be made on an individual basis (thus the reason for the conflicting decisions) and must ask the question: “Can the services in the segregated school/class be provided in a general education school/class?”

Remember in the 70s-80s, we were just trying to get our children to be considered: “persons”; “capable of learning”; “potential employees” and to be allowed to go in the door of the public schools.

The term “inclusion” had not been invented yet.

The Roncker case was important for many reasons: it showed the congressional intent of education in the least restrictive environment; the rights of parents to go due process; and the courts responsibility to hear the evidence in education cases as well as consider class action lawsuits. The question of costs was also to be a consideration. These were critical milestones which affected future cases like Daniel R. R., Timothy W. and many other cases.

To avoid a “class action” case, Cincinnati Public Schools settled on Aaron’s case after we won our first due process hearing. Aaron was allowed to go to a public school. Long story, but my husband was a teacher in Cincinnati Public and because of harassment for Aaron and our family, we moved to another school district a year after we won the right to go to public school.

2. Can you share a couple of those Aaron success stories?

Our family researched the 5 counties in our area which included 3 states. We found one school district where both our children could go to the same school. After our three year battle with our school district and hundreds of confrontations with angry parents and teachers, our first success story was on Aaron and Tommy’s first day in our new district.

The yellow school bus pulled up in front of our new house and both our boys got on the same bus to go to the same school. No bands playing, no angry protestors, just four neighborhood kids waiting on the corner.

One young man who was about 9 years old, who had known Aaron for all of ten minutes, reached out his hand to help Aaron get up the steps of the bus. No one asked him–no one gave him an inservice or lecture on attitudes toward people with disabilities–he just instinctively gave Aaron his hand to boost him up.

That was when I knew Aaron was going to be fine. A helping hand–isn’t that all we were ever asking for?

If you want to see a picture of this moment, click on the historical slide show from the Minnesota DD Planning Council’s Parallels in Time 2. Aaron getting on bus his first day in an inclusive school.

Aaron and Tommy attended school together for almost their entire educational experience. Tommy is one of the most sensitive caring people I know and is now a radio frequency engineer with Sprint. They shared many activities together.

Aaron participated in inclusive social, emotional, some academic and after-school activities: Boy Scouts, the prom, the junior high dance, track/cross country, chorus, the environmental club, Friendship club, bowling, work study/vocational job club, and many other school activities. On my blog, I wrote about the graduation ceremony (link below).

If you want more information about A Place to Learn, check out the Parallels in Time 2. It is wonderful.

3. When you were teaching the “inclusion” courses at the university, what did the education students think about inclusion?

It was interesting. Most of the university students who went to school with people with severe intellectual and developmental disabilities couldn’t understand what the big deal was. The students who came from private schools where there was no diversity, were confused and uncertain how inclusion could work. I’m hoping my class made a difference, I’m hoping the next generation of students will have the learning opportunity to be voters, friends, neighbors, co-workers and bus riders with others who are different from them. As our world becomes more diverse, this will be a critical life lesson.

4. Some school districts call a school an “inclusion” school and all the students in the school have IEPs. Does that meet the definition of inclusion?

NO! Some school districts just make up their own definitions. Other districts “dump” kids in classes with no support services. Last year I went to supervise student teachers in an “inclusion” school and was shocked that everyone in the school was on an IEP. Check out Michael Giangreco’s article and terrific comics: “Moving Toward Inclusion.”

5. Why do you think inclusion is a civil rights issue?

The reason we have the term inclusion is because we have had exclusion, segregation and inequality. Senator Lowell Weicker said, “As a society we have treated people with disabiliteis as inferiors and made them unwelcome…”

If you have any doubt, check out Parallels in Time I ” a website on the history of people with disabilities.

In Brown v. Board of Education (1954) “separate is inherently unequal” says it all.

Check out “What is Inclusion?” on my blog ClimbingEveryMountain.com and see Aaron and Tommy in their graduation pictures.

Again, here is the link for the interview: The Inclusive Class: Successful Inclusion with Mary E. Ulrich

Keep Climbing: Onward and Upward.

All my best,

Mary

Comments:

Share some of your inclusion stories and let
us know what you are thinking. Will you listen to other interviews on The Inclusive Class? I’ll pass on your ideas to Nicole and Terri.

Here are their websites:

Nicole’s site:

http://inclusiveclass.blogspot.com/
Terri:

http://specialchildren.about.com/