We’re moved to be closer to our kids and deal with health issues I talked about in the post “…the yet-to-be-disabled”(click here).
Tom\’s Garden with memory rocks
For the last 10 years, we’ve loved everything about our condo: our neighbors, the location, the resort setting, watching the morning mist on the golf course, and the fact Tom no longer had to rake leaves, cut grass or shovel snow. Tom did choose to nurture his gardens. Pictured is the smaller garden in the front of our condo, there is a much larger one with tomatoes (with old golf clubs as stakes) in the back yard.
In many ways, Realtors are like the professionals in “special needs” and “Disability World.” (click here) Like most professionals, it is all about “being objective,” utilizing “best practice” and “scientific research.”
They would look at this garden for its curb appeal. Since I will NEVER be objective, I want to give you an unscientific tour of Tom’s garden.
Over the past ten years, he has fertilized, tilled, and built up the soil until it is now rich and hearty. In Ohio, it’s been a dust bowl kind of summer, but Tom’s kept the flowers alive with his devotion and a lot of watering. He grew most of the marigolds and petunias from seed. He’s brought the impatiens back from death several times. He agonized over whether the white flowers would be better positioned between the pink and purple, or the red and pink. The golf flag was a Christmas present from Aaron. We bought the log on a Sunday drive in the country. The rocks are special: each camping trip Tommy and Aaron got to pick a rock to bring back for the garden. There is one from Chief Crazy Horse’s Monument (we bought it-don’t worry). There is one from outside Yellowstone National Park that has the yellow flecks in it. There is one from my sister’s yard in Colorado that caused the bomb squad to detain our luggage. Our neighbor even brought us two rocks from the coast of Maine on his last trip. You get the idea.
This might be “just some flowers” to an objective professional, but every flower, every rock is special. No one will even know a maple tree used to be out front, or we had to advocate with the home owner’s association to place the street light on the street (duh) instead of in the middle of the garden. Who would know a lawnmower propelled one of the rocks through a neighbor’s window? Rather than lose the view of the garden, she chose to redesign her window. Who would ever think the garden has a history and touched so many lives?
Though we can take the rocks and some planters with us, this little garden carries 10 years of memories. Like everything else in our move, it’s never objective–it’s very much personal.
Tomorrow I’ll be blogging about, “Turning it over to the professionals” a phrase which turns the blood of parents of kids with disabilities to ice.
What are your experiences? We are all on this life journey together. There are some adventures that just make us human. Share?
Keep Climbing: Onward and Upward.
All the best,
Alison and I are starting a Twitter hashtag #CB/BC Join us.
Ed Roberts was an amazing guy. We were both on the TASH board and I got to spend some time with he and his son (pictured). Click on his name and see his incredible accomplishments. Ed was into action, not words. He was asked to be one of President George Bush’s “1000 points of light,” which he declined calling it Bush’s “1000 points of hype.” When he died, his wheelchair was donated to the Smithsonian. One of Ed’s quotes was:
There are only two kinds of people in the world: the disabled, and the yet-to-be-disabled.
This past year, my husband has had some heart issues and I’ve struggled with sciatica. Because my back pain’s not going away (even though I’ve had the lumbar shots, physical therapy…) we decided we needed to move to a ranch house.
And true to Ed Roberts’ prediction, I have crossed over the “yet” and am now starting to see the world from the “disabled” point of view.
Of course I’ve always seen what worked and didn’t work for Aaron, my son with a severe disability. But even with that knowledge and experience, now it is more personal. It is me. And it is shocking.
Boomers and Housing “thought leaders”
First of all, the housing market is filled with two stories; split, tri and quad levels but few ranches. The ranches that are available were built in the 60s. So they have old plumbing, bathrooms the size of postage stamps, and some even have steps. Yep, steps to get to the one-floor plan.
As we boomers age there is a scarcity of accessible housing. Sure there are some new patio homes but they are pricey and often in “mature” neighborhoods. Sure there are condos and apartments with elevators in crowded senior high-rises. Sure there are retirement communities which are basically segregated facilities–beautiful, but still segregated. Isn’t that what we have been fighting against for the last 30 years?
So, what to do?
Next week my husband and I are putting our multi-level condo up for sale. We figure in this market, it is wise to sell first and then buy. But as we go through potential houses, we are not finding anything appropriate. Where is the diversity? Where are the neighborhoods where ranches are mixed with multi-level houses? Where are the neighborhoods where seniors and young families can live together?
Universal Design has been around for a long time, where are the houses built with this concept? Why have the builders not used state-of-the-art thinking and technology?
I wish Ed were still here to make a joke and put things in perspective. I wish Ed were here to share his wisdom and spirit. Fact is, I just plain wish Ed were here.
And once again, I am reminded of my own aging and mortality. And that is another shock.
As I think about my own passage into the world of disability, I feel more prepared. People with severe disabilities have led the way. They have taught us to strip away all the frills and find the core of what we need. They have helped us learn about interdependence, adaptations and accommodations, systems of support, circles of friends, partial participation and community involvement.
They have taught us what is important–to be surrounded with people who love and care about us.
So, Tom and I will figure it all out. We will use the advocacy and problem-solving skills Aaron and others have taught us.
I remember when one of our relatives had a stroke. He would complain verbally and non-verbally, “I’ve only been like this for a short time” (I used to be independent and able to walk.) He would explain to everyone who would listen, “I didn’t use to be handicapped. I was an engineer.” (I had worth.) “Aaron is too close he might step on my foot.” (I’m damaged now, but I’m not like him, once I was whole.) He did not want to be near Aaron. He never put his prejudices into an actual discussion, he just always had this attitude about people with disabilities–and by god, he wasn’t one of “them.”
We have worked so hard to change people’s attitudes about people with disabilities. The next generation of children has had personal experiences with people with disabilities in the schools and community. But maybe the bigger lesson is that learning to be more tolerant about others, will make it easier for us to be more tolerant of ourselves. Hopefully, part of our learning about differences will ease the process of getting older.
We are all the same on the inside. We all need to be loved, safe, happy and give to others. That doesn’t depend on what our outer body looks like. That doesn’t depend on what side of the “yet” we are on.
I think these lessons will serve me well.
ps. Anyone looking for a great condo?
Please share your thoughts in the comments.
Are you offended with Ed’s quote, “There are only two kinds of people in the world: the disabled and the yet-to-be-disabled.” Do you think this discussion will help us as we age?
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.”