Josh Goes to University – and The World Down Syndrome Congress in Vancouver

My Friends Will Help Me

From the archive.

While in Canada, we had the unique opportunity to have Josh included in a typical university course on “Disability and Society.”  The majority of the students were education majors.  The professor and I created an emancipatory research approach – which means Josh was aware of the project and included in the decision making process.  We called it his chance to “teach the teachers about Down syndrome.”
My Friends Will Help Me
Josh’s poster setup
I’ll admit, it was an experience in letting go for me.  Josh was given an “aide” in the beginning of the project.  He was told that it was her “job” to help him.  After a few weeks of class, he fired her.  (oops!) He told us “my friends will help me.”  That’s where the title of the project came from.
Josh had modified assignments, that were the same as what his classmates were doing, but on his level.  He chose a study buddy, Jenn.  She helped him complete his homework and eventually presented her side of the experience at the conference in Vancouver.  His Professor and I also presented.

The most touching, and frightening part of the experience for me was Josh’s relationship with Jeff.  Josh gravitated to him for an obvious reason – Jeff had a ponytail.  Jeff was asked to participate in the study and agreed.  The two went on several outings together, including an Alice Cooper concert that Josh still talks about today.  The touching part is seen in the essay Jeff wrote after the study:

This year, many things happen to me that I will never forget.  By far though, was having the unique opportunity to have a friendship with Josh.  At first, I was sort of apprehensive, not sure of how things might turn out.  I was mostly afraid of not being a good enough friend, not knowing if I would be able to build a relationship with this unique individual.  I also had a disability, and that was in oral communications.  I did not know if that would hamper the friendship.  Even with all these fears and unknowns, a bond was still created.

At first, I was doing all the talking, finding it tiring.  Yet I knew I had to make Josh comfortable around me before he felt that he could talk.  Eventually, he started to open up, and I was amazed with the type of perspective he had on the world.  For instance, one night he joined my friends and I for a movie and dinner.  After the night, he told me that he did not like some of my friends and I asked him why.  His reply embarrassed me.  He said that some of my friends treated him like a little child.  He felt hurt by the experience.  He might not have shown it (and it takes a lot to hide your emotions), but it hurt him all the same.

It was at this point, that I started to understand who Josh was.  He might not be the quickest person around, but his ideas are just as powerful and thoughtful as anyone else’s.  It was from his slow response that people misinterpret it as him not being capable of thinking for himself.  In many ways I acted like everyone else.  I was talking to him all the time, not allowing him to have enough time to process the information and respond.  I was not making him comfortable around me, but hurting his feelings.  From that moment on, I decided to keep my mouth shut during our conversations, so that Josh had enough time to respond.  But the question became, where did I pick up such a way of thinking?

After having some time to think, it struck me.  This line of thinking came from the social acceptance of society.  It had been a part of my culture for such a long time that I did not recognize it as an alien thought.

Overall, both Josh and I have gained much from this friendship.  I know that I have gained a new window in which to see the world.  Josh, I believe, has grown more from the time I met him at the beginning of the year to now.  I don’t know if this was because he attended class or it was a combination of many factors, but all I know is that Josh is now more comfortable with himself and that the friendship that was created between the two of us will never waver.

The transformation of thought is what we all want people to experience.  It’s the reason we fight for inclusion.  This experience is the truest definition of “awareness” that I can think of.   But, for Josh, it came at a price.  Whenever we expose our children to these types of “opportunities” we also invite a certain amount of risk.  Each time we hire workers, or provide peers like this, we run the risk of our children growing attached.  I knew that once the semester was over, we would be moving on.  Josh still calls Jeff his “best friend,” but we haven’t heard from him since we left.  I can only hope that the fun he had and the learning experience was worth the feeling of loss he must have now.

Vancouver

 

PictureSince we were in Toronto (on the east coast) and the conference was in Vancouver (the north-west coast) we had to find a way to get there.  On a student budget, the only way we could afford was the bus.  Yep! We spent three days – one way – on a Greyhound bus.  It was an adventure in itself.  Josh didn’t seem to mind, he had his music.
 talent show
Once we got there, he was the star of the show!  Everybody wanted to talk to him and he ate it up.

Of course, his favorite part of the whole thing was performing Aerosmith’s “Walk This Way” at the talent show.

Overall, I think the project was a success.  It helped open everyone’s eyes to different opportunities and ways of thinking, including mine.  I let go a little (although I had the professor call me as soon as class let out and I could watch him walk home from my window.  Shhhh…)  The other students, some of whom I’m guessing are teachers themselves now, got a real experience of getting to know someone with Down syndrome, and Josh got to “go to college.”

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  1. […] But, to my professor’s credit, she was willing to talk more about it and eventually we came up with what we called an emancipatory research project that allowed my son to help design the study that took place while he participated in an undergraduate course on the social aspects of disability. When the semester was over he presented his work at the World Down Syndrome Congress in Vancouver with a poster session entitled “My Friends Will Help Me.” […]

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