conference notes

Last week I had the opportunity to go to Portland, Oregon and attend a national conference put on by the organization called TASH. TASH stands for The Association of the Severely Handicapped, but from my understanding really means something more like the association for those with disabilities pushing for more inclusion and less segregation in education, in the work force, in churches, and in community.  I learned about the conference over a year ago, but was unable to attend because of child care logistics, etc... My friend Janice and her husband, Rich attend yearly, and their son, Micah is on the board. I talk a lot about these friends- so if you don't know who they are I'll catch you up. Micah asked to be in the regular classroom with his peers and go through the same door as everyone else in 1st grade... his website and powerful story of the fight for inclusion even into the university campus dorms can be found here on his website. He now works at Syracuse University. Janice has a careful listening ear and wisdom filled words of advice- mostly about being more patient with myself. She's done a lot of writing as a mother and I am so thankful to have her in my life- you can read her stuff here. Their connection to and promotion of the organization TASH was the reason I decided to attend.

This conference lasted 3 days and had a couple talks with everyone there and several breakout sessions a day with multiple options. The first day was more of a series of lectures based on a particular topic. I started off in one about inclusive education. Before I go on I'll say this blog entry will be very different than the others- it's more of a "here's what I did and what I learned." The reflections will take time. I started a separate writing with more of my reflections, but I might take some of the advice I've over the years and see about turning it into a book. I just wanted to share what I did and what I learned because many have asked and I have a hard time articulating...
Ok moving on... so the first session started with a mom of a son with Down syndrome sharing some of her story... but the things I wrote down were, "Disability should be valued". I dunno- I think I may have written a blog or two about that idea... :)
And to remember that children with a disability- or people- or even you..."are a gift in this moment with no improvements." I don't have to fix Bentley for him to be a gift in the moment as he is. What a relief! This session was interactive and my group discussed Bentley's inclusion model at his school now and we brainstormed ways for it to be even more inclusive- so for us that would be helping his aide to step back at 1 given time a day to let him figure it out with his peers...

The second workshop was about dyadic interviewing. So basically when you're doing an interview for a research paper you might interview a person with a disability and you might need more information so you decide to ask for more info, but who do you ask? She explained the importance of asking the person with the disability who they would like you to interview- so making sure we give them power in their own stories. She explained the importance of the findings of the data being from the perspective of the right people. Also making sure you make the questions available ahead of time so the person you are interviewing has time to process, etc... My biggest take away is this idea that we as intellectuals often feel like we have the answers- or even the access to answers- but people with disabilities also have answers and know their lives and their stories well- so to be patient, to listen well, and to value the person you're talking to.

The rest of the afternoon were sessions about how inclusive education works practically. So things like, "give the state standard a hair cut and figure out the most basic thing you want the students to learn and start from there."  Making sure to use lots of graphics in the classroom for students. Making sure the students have access to the text being read- does someone need to read it to them? Does it need to be modified to a younger grade level? There are programs that do this now!
In Math it's important kids can count and do cardinality well before moving on to more challenging math.
This comment came up which I of course loved: 
"I don't want to test the students, I want to teach them."

another was:
"behavior that does not fit the norm because it is a problem to be solved and something to be fixed- and not something to be understood."
Imagine that.

An idea to make sure all students have enough processing time is to ask them a question and the students have a red and blue card on their desks. When they're ready to answer the question they turn it to blue and when they're thinking it stays on red... this can really help everyone to get to think before jumping into answers.

One comment I loved- and any mom of a child with a disability will totally get:
"If all you're doing is counting lakeshore learning bears for math- you're gonna have behavior issues." To which I say: Amen.

It's important we all make the "Least Dangerous Assumptions."

Making sure teachers are using high interest topics to keep the kids interested.

The next day I learned about an elementary school in Hillsboro...
so 5 characteristics of an effective inclusive program:

attitudes and beliefs
school support
services and physical accomodations
collaboration
instructional methods

making sure to add staff who support inclusion

"Inclusion isn't a place- it's a philosophy"


Next I went to a session on creating welcoming faith communities- it was about whether seminaries are preparing pastors to help families with a child with a disability etc...

"nothing created so much sadness in the lives of parents as the failure of the faith community to value the spiritual connection or community role of disabled children."

Then I went to one about the real truth of self containment vs inclusive classrooms. This one broke my heart. (This one is all on research as well).

kids with complex needs are getting more and more left behind in self contained classrooms
little individualization is happening in the classroom
kids with complex communication needs weren't doing anything for 42% of the day. Remember: complex communication needs does not mean intellectual disabled.
when typically developing peers were in the classroom all the sudden discussions happened and teachers started teaching...

overall data analysis:
low quality student teacher interaction
teachers at desks, paras teaching
interactions consisted of verbal directives- go get this, go do that... not engaging
one student with communication needs was totally ignored over and over again.

one teacher designed a lesson plan for the researches to observe- she was trained in sign language. She got her students together and started to teach them signing- but the students she had didn't have the physical ability to sign.
I mean really- can you imagine?

there was no curriculum
often not age appropriate activities
not organized
often without clear purpose

An assignment for one was this: she grabbed the materials to stuff envelopes- so she got the note cards and envelopes and materials and stuffed all the envelopes. then she unstuffed the envelopes and put everything back. So she knew the project was totally meaningless.

one student had signed up for the research and the researcher arrived at the school and  couldn't find her... the student was down the hall strapped to a table getting her stretching exercises.  The researcher said it was extremely uncomfortable and awkward.

I'm pretty sure that teacher has access to more resources on appropriate stretching. Break my heart.

classrooms are very physically removed from campus
areas of of classroom set aside for those with more significant needs
teachers spend more time talking to each other than teaching
little consideration of individual students needs- especially kids with communicative needs

new research opportunity: What's the causal link between inclusive education and positive student outcomes? Is segregation justified? 

I went to a session on helping medical students build empathy for kids with disabilities... I may have been part of a panel about this for like 7 years in a row... So important!

I also went to a workshop about a mom advocating for her son to be included. It was an inspirational story with lots of pictures and his journey...

I went to one by a Canadian man who talked a lot about people with disabilities and self advocacy. He had so many stories that I didn't write down...

From Hiding to Margaritas... A girl shared about her 26 year old friend with DS who was hiding in her apartment and wouldn't let anyone in. She didn't want her family to keep making all her decisions- once she was heard she realized her friend (who I met) needed a roomate they moved in together. She talked about how she and her roommate with DS dance around the house, and watch movies, and she got a text the other day that she was at the bar eating pizza and drinking margaritas! Once her friend with DS she was able to live a more independent life she was so much happier.

During the conference I was also able to grab lunch with Janice. I also stayed with my mom and Kathryn which was so great.

I met two people selling a book called, "They Said We Couldn't" It's an autobiography written by two individuals with cerebral palsy and their fight to be heard. It's an amazing read. Meeting them was very inspiring and encouraging.

I don't know how to fully articulate how being at this conference changed me. There were moments of awkward behavior and no one freaked out or acted like it wasn't OK. There's this space to be who you are and to ask questions and to rant and to yell in the microphone. No one is pretending like there's this preferred way to exist. It was very freeing. It's especially freeing as I think of ways to celebrate Bentley's differences.

So there's the basic gist of what I learned and what it was about. The reflections will trickle out- hopefully-!