"I Do Believe, I Do Believe, I Do, I Do, I Do...."

I told you last year that after a school career that was always to some degree inclusive (at least half the day), we moved my daughter to a special education program at a special education school... This was a huge change. It was a big change for my daughter and it was a seismic shift for me!

The good news is it is going great! Jenn LOVES her school. She loves her teachers, she loves her friends, she loves everything except math (which she didn't like before either!) She loves going out on the town for social things and for work experiences. She is a cheerleader and she's active in everything they have going.

She is more independent at so many things.  She self-advocates much, much more. And she is making academic progress. It has been a very good move.

And yet...

Sometimes I feel pretty guilty about changing... and sometimes I feel completely misunderstood. One friend who has never believed in inclusion shocked me by saying "Terri used to believe in inclusion, but now she's seen the light!"

GRRRRR!! And all I could do was stammer and stutter ineffectually finally coming up with with, "Nu-unh!"

(So there!)

Can I have a do-over? Please?

First of all, more than I have ever believed in inclusion, I believe in choice and individualization.


Secondly, I absolutely do still believe in inclusion. I have always believed that people are healthier, happier and safer when they belong, when they are known and cared about in their community. And how can one become known or cared about without being present--at the very least, visible--in that community?

This hasn't changed. Honest.

Inclusion is a process, not a religion that one can be excommunicated from (exclusion from inclusion, really??) We believe Jenn is becoming more 'includable' because of the education she is currently receiving. That's why we chose it. We absolutely will have to work harder for relationships in our community to happen for her, and we know this.

What I truly wish is that I could name and quantify the very positive things that are happening at this new school so they could be applied in other places....

Here's what I have noticed so far:

• The prevailing culture seems to be about growing the kids' world. It is much easier to build a smaller and smaller world for kids like Jenn, but that is NOT what we want. They seem to start with what she can do and then ask how could she do more. It is much more common to hear things like "she does well in small groups so let's give her lots of small group stuff."  Here they seem to say "she does well in small groups, how can we enlarge that?"
• They work hard at having a safe environment, but they are not obsessed with protection (protection is the consummate small world maker--it's also an illusion, but that's a post for another day!) They also work hard on teaching strategizing, self-advocacy and resilience. It's a good balance, I think.
• They aren't afraid of the kids' emotions. When I toured the school the principal told me "Drama is where social skills are learned!" This is the absolute truth, if you think about it! The idea of sharing is easy, sharing when you REALLY don't want to is what really matters!  Values/principles become real only through being challenged. I have to say that at our district school there were no real challenges--if Jenn had taken someone's seat or something the adults would intervene, but the kids would pretty much say it was ok... She's seen as a more of member here, I think, so she's fair game!
• They practice differentiated learning and have not yet asked me, "But why does she need to learn that..." Some kids there are much stronger academically than Jenn, and some are not and the expectation is that they will all participate in every lesson I have seen.
• They seem to take a facilitation approach instead of either 'letting her be there' or 'taking care of her.'

I do know the place isn't perfect. And Jenn has definitely experienced many of these things before...  I am just trying to analyze what I see. What are the ingredients that make a program work for you or your child?

Port Lucie Debacle

Now that I am back the first piece of outdated disability news I want to comment on is what happened in the Florida classroom that that voted a boy with autism off their island.
I will begin with a story:

Once upon a time there were 2 best friends in a first grade classroom in upstate NY. They both knew how to read, loved books, loved words and loved sharing this with everyone they knew. Perhaps they were a tad obnoxious which was only accentuated by the fact that they were 7 (many 7 year olds lean a little toward the know-it-all side, look it up in your developmental psych book!)

In first grade these girls were inseparable, in second grade they were in classes across from each other. In one classroom the teacher was pretty awful. She called her student a show-off, made fun of me (I mean her) when she picked out chapter books to read and was otherwise generally unkind.

Her friend, on the other hand had a teacher who let her read out loud to the class, had her look things up in the dictionary and generally was nice and seemed to value her.

The first time I ever cried in school happened when our two classes were in the school library at the same time and my friend went over to the encyclopedia with the librarian to look something up and I looked at them. My teacher yelled at me (in the LIBRARY) and asked me ‘Did I think that I was going to get to look in the encyclopedia with the librarian??? NO I WAS NOT!!!!!’

After that a lot of people thought picking on me in school was a pretty good idea. Ugh! She went on to torture one of my brothers, but my parents figured her out that year and kept my other brother from having her (which amazed me—I didn’t know parents could DO that!)

The moral of the story is I was not picked on because of who I was—my friend was much like me. I was picked on because my teacher was mean. She had a host of approaches to choose from—she chose nasty. She could have chosen nice—my friend’s teacher did…

The boy in Florida was not excluded because of his diagnosis, or even because of his behavior. There are thousands of teachers in the country who do not vote children out of their classrooms—no matter what they do.

When you read follow-up stories you realize that the teacher and much of the world still does not know what went wrong. I think I can help.

Apparently there were behaviors in the classroom that were difficult and were disrupting learning. So the teacher called the class together to name the problem and strategize solutions.

So far, so good. This is often a good strategy with groups that have gone sideways.

Where it turned into Lord of the Flies was in the next phase:

Here the teacher could have pointed out that all of these feelings and actions and drama are interrupting learning and then laid out a plan for ‘what we will do in our class when these dramas occur’. Then she could have said that the class would meet again next week to make sure things were working better, but if they weren’t we will fix the plan until we get it right. This would make it clear that she was in charge of the dynamic and it would make kids secure that everyone belonged AND that she was going to handle the problems that were upsetting to them.

But no, from here the teacher blamed the whole problem on one of the students and had the kids turn against him and vote him out.

The teacher is just lucky that she did all this at the end of the school year, rather than at the beginning. According to studies in education the formation of the learning community is one of the strongest predictors of the academic success of the students in any class. Their learning community became an incredibly dangerous place to be.

Teaching the children that the way to be “in” is to make sure that someone else is “out” leads to a lot of insecure kids scrambling to avoid the same fate—some will duck out of sight, others will aggressively seek to keep the negative attention on some scapegoat to protect themselves. These kids’ future teachers will be contending with this dynamic from them for years to come.

I will not insult the thousands and thousands of teachers who handle problems like these and more in thoughtful and effective ways by saying “teachers are just not prepared to handle these things.” Universities have been teaching and research has been supporting inclusive education practices since PL 94-142 was passed in 1975.

Most teachers are NOT 35 years behind in their profession!

[And can you imagine a computer engineer facing some new operating system saying, “I really can’t do this, when I was in college we learned Cobal, or Basic, or MS-DOS???? Everyone’s profession has changed since they graduated!

But I digress! (that’s for you Barbara!)]

I am sad for this boy and for his classmates who learned something about the way the world sometimes works--they could have waited a few more years to learn this lesson—some innocence is lost. But I am really glad that in this day and age people have the ability to name these situations as abuse and protest when they see it.

Kudos to Alex’s mom and the millions like her who are standing up for their kids all over the world!

Image from here.

Blog Carnival #38: Book Giveaway

In my role as Virtual Trainee for the AUCD I attended their annual meeting last fall with people from universities all around the country who work to improve lives for people with disabilities through research, service and policy. After a full day of learning and a high-energy poster session I gathered with a group of starving people and went to dinner.

In the course of dinner conversation we ended up discussing how everyone became interested in working with people with disabilities. As a mom I found it fascinating that, while everyone’s stories were unique, they were all based on relationships they’d had with people with disabilities at some point in their lives.

One of our fellow diners, Dr. Erik Carter, had gotten to know people with disabilities while working as a camp counselor—he had intended to work with the non-disabled kids at the camp, but had been re-assigned much to his surprise. He said his experience at that camp changed his life—in fact one of the campers in his charge was the person that invited him to faith.

His experience so profoundly moved him that, in addition to his career work in education and research, he wrote a book to help congregations successfully integrate people with disabilities into their faith communities.

Including People with Disabilities in Faith Communities: A Guide for Service Providers, Families and Congregations extols the value of inclusion for faith communities, shares the current research about people with disabilities in congregations and gives tools and practical advice for applying principles of hospitality, belonging and continuous growth in your own community.

He builds a case for inclusion that is convincing and compelling.

“It is not enough for congregations to simply mirror the rest of society when it comes to including people with disabilities. Rather, they are called to be leaders in transforming the culture—to graciously, lovingly and actively influence their communities. When congregations push toward a higher standard than the rest of society; when they demonstrate leadership, rather than lagging behind; and when their efforts stand in stark contrast to those of others in their community, it sends a powerful message. When a welcome is compelled by deep love and a sacred call, rather than by legal decree, it speaks powerfully to a watching world and provides strong evidence of one’s faith commitment.” (p. 17)

Later he goes on to say:

“It is more than a “nice idea” to include people with disabilities in your congregation. People of faith are called to view people with disabilities as integral to the wellbeing of their community; every member should be regarded as indispensable. When an entire segment of the population remains absent from the body of believers, that community not only remains less than it could be, it remains less than it was intended to be. Wholeness will always remain elusive to a community when the gifts and contributions of a whole segment of people are missing. Indeed, it is the community that becomes “handicapped” when people with developmental disabilities and their families are not present.” (p. 18)

The book also draws a distinction between congregations that allow people with disabilities to be present and those in which these same folks belong, participate and do more than receive but also serve and contribute their gifts.

Beyond the why’s of inclusion, a good portion of this book is dedicated to the how’s as well.

There are questionnaires to evaluate physical and attitudinal barriers to , religious education and other programs, and the needs of individuals who wish to worship with you. There is a chapter on discerning and providing supports, a chapter on the role of support staff and one about expanding your initiatives to impact your larger community.

The whole book is geared to help congregations progress continuously in their hospitality.

In short, get 2 copies of this book—one for you and one for your faith community. I think any community would benefit from the support and challenge this book presents. Churches that are struggling (like this one in Minnesota)would be much stronger after studying this book together.

In honor of this blog carnival Dr. Erik Carter has donated a signed copy of his book for a drawing. If you would like to join the drawing, leave a comment by 5pm 5/29/08 and I will draw a name and we'll send it along. Good luck!

My other post on disability and faith is here.

(Image of book from here.)