Tuesday, September 25, 2007

EdVenture Weekend 1:
The Good, Nothing Bad, & the Ugly

After a fews days of rest and contemplation I am quite satisfied that our family added quite a bit to the experience this past weekend. The folks there had a huge TV with a DVD ready so that we could play the Jane Robelot interview as a continuous loop. Joan also made a twenty minute recording of family pictures set to music. When I figure out how I can add something that long to the blog I'll post it. The video was quite moving.

We had families with special needs children and families without visit us. Many advocates representing just about every statewide disability organization were also on hand to distribute literature and talk about programs that too many South Carolinians aren't aware of. Joan and I were very surprised at how many of those in the latter category knew of us, Ben's artistic endeavors, and our past visits to the Statehouse to support disability rights.

We were also impressed with the amount of folks that spent a great deal of time at our table. Many a parent or older sibling wanted to know all about Ben, how we started using art for therapy, and all the details of the three projects we put together. What surprised us most was not the reaction of "normal" folks to Ben's paintings but the reaction of special needs families! It was as if the idea of putting a paint brush in their child's hands had never crossed their minds. To say that our story was eye-opening would be an understatement.

There were a few glitches here and there which was to be expected. We'll be better prepared this coming weekend to handle so many people wanting information. In fact we sold several prints of our work and a couple of packs of note cards. Those have four cards (with envelopes) featuring one of Ben's paintings on each one. We also can't say enough about the staff of the museum. In a word, they were AWESOME!

The only upsetting situation occurred on our first break. We took that opportunity to tour the facility with the kids. I knew at some point we would confront something like this but it was truly unfortunate that it happened on Ben's special day. Three little boys approached me and Ben as we were just starting our route. I'm guessing they were around 8 years old. One of them began pointing at Ben and began asking no one in particular, "What's wrong with him??!!" A woman I'm guessing was his grandmother stood nearby but never said a word about how rude the child was acting. He continued asking the same thing several more times before telling the other boys how funny he looked.

At this point my mind was beginning to fill with rage. I responded by saying, "my son is no different than you, he's just a bit slower." I was staring at grandma with the hope she would intervene and come up with an adult explanation for her rude kid who was really pissing me off. since I was technically working for the museum at the time I wheeled Ben away and tried to move to another room away from the kid. After a few more protests, "Why won't he tell me what's wrong with him?" I turned around to see mother telling him to hush. She looked directly into to my eyes and just turned away. No apologies. No discipline for the loud-mouthed kid.

Now the ironic part: the family was African American. A young man whose elders were once and perhaps are still treated less than human because of skin color made my son feel the same because he sits in a wheelchair. It was quite obvious that Ben completely understood the situation. His whole demeanor changed to the point that we thought he would "shut down" as he has been known to do in the past in uncomfortable circumstances. That would've ruined the day. Essentially it broke all of our hearts to see our son and brother's reaction.

Joan insisted that I go find a quiet place to talk to Ben and I did. We talked about the difficult things he's accomplished. We talked about the bright future he has before him. We talked about the incredible talent he has, so much so that people all around us were wanting to be a part of it. And finally I told him how much more intelligent he was than those so-called normal boys. After all, Ben has shown great compassion for others throughout his life and it takes a brilliant mind to embrace that quality rather than a harmful one.

Although he can't respond in a way most of you could understand I knew he understood. He finally looked back up and grinned at me. He then pointed to the canvas we had been working on earlier and so we painted.

After mulling it over for a few days I don't blame the kid nor do I blame the grandmother even though she has probably walked an even more difficult road than we. I blame our education system. I blame irresponsible politicians. Moreover, I blame myself. Great strides have been made in the pursuit of equal rights, equal access, and equal justice for all particularly in the last half century but we still have a long way to go. I know I can do more and participating in this month's program in a children's museum is at least one small way of doing that.


Gretchen said...

WOW! It's sad there is such ignorance isn't it? I'm sure this young boy was a)showing off for his friends and/or b)so uncomfortable he didn't know how to act. Grandma should have said something though! An adult always should know better.
My greatest mission for Simon is promoting tolerance and yes, LOVE of the disabled. I want no one scared of him or afraid to talk to us, I want him loved for the sweetheart he is.
I am DUMB-FOUNDED at how well Ben perceives the world around him. I really think Simon has no clue (and I don't mean that meanly). I'm AMAZED at how you handled the situation. I have some "growing" of my own to do! I would have assumed Simon didn't understand and gone our way. Maybe I'm not as sensitive as I need to be, hmmm?

Hooray for the success of the day, both emotionally and financially (because, hey, it's not your fault people wanted to buy your awesome stuff!!) Hooray too for the exposure to the disability organizations. I'm one of those that are very unaware of my state's offerings.

Sorry for the long post :)


Gretchen said...

P.S. if you need to, print off some of the medical documents on www.pkskids.net. I saw in one picture you posted you had a poster with the logo on it! THANKS for helping with that too.

Ben & Bennie said...

G, I really don't want to give you false hope about Simon. There are A LOT of similarities - in fact too many to even begin to even draw comparisons about the two boys.

It took 8 years before actually began believing what we who spent most of our time with Ben were seeing. I didn't believe it myself until he began trying to communicate with us. THAT was the key.

It is easy to get angry when someone unknowingly confronts your child in the way this situation happened. Had I the opportunity to confront him again I would've done something much different like ask him to shake Ben's hand.

Like I said his parents or guardians should've stepped in and alleviated the situation and that didn't happen. That is one of the things I'll be more prepared for this weekend.

Gretchen said...

Bennie--I totally agree with you about the parent. I like the idea about asking the boy to shake Ben's hand. So far, we've just have very young curiosity, nothing malicious at all, thank God. We'll see how well I do when and if it happens.

No need to worry about giving me false hope. I pray for the best and accept God's will and where we are now. But WOW again! I love that! Go tell Ben that Gretchen and Simon love him and give him a kiss from us! We gotta get these boys together!!

Gert (the fish)

Anonymous said...

Bennie I can't think of how to phrase this question where it doesn't seem rude--- and I think that is part of hte problem with many parents-- they are trying so hard not to offend & to be PC, they just end up saying... nothing.

My question for you--- I have two young children, and I hope they wouldn't behave like the ones did you encountered. I KNOW I wouldn't react like that mother or grandmother did. But as you know, kids are curious about anyone that might look or seem different than themselves.

1. What SHOULD the mother/grandmother have said?

2. Would you welcome interaction with other kids with Ben? Or would that be intrusive?

3. How should we as parents teach our kids to interact with kids that may be less verbal?

ughhhhhhhhhhh. see here I go, I feel like everything I said is offensive. Please know that is not how I intended it to sound--- I genuinely don't KNOW. What is welcomed? What is offensive?

Ben & other kids like him deserve to be able to interact, and I need to teach my kids HOW to interact.

PS--- I love the pic of Ben below sleeping--- he looks worn OUT!

kimmyk said...

this is a very serious post...when i read through it i was angry. i mean...i just couldn't deal with the ignorance of these people you encounter. i would bite my tongue off i'm afraid.

now, onto something cheery.

i thought ben had a purple cone hat on his head in the pic. i thought "what's he celebrating?" LOL. he looks like he's deep in thought or he is not fond of that shade of green. either way-oh you know what-he looks older in that pix too. there will be no more of that-that growing up business. you can tell him i said so too.

Vance said...

Bennie, you're a better man than me. I would have most likely said something to the grandmother or the kids (no promises that it would have been polite). I'm not one to lose my cool that often, but that kind of thing can set me off. Sounds like you handled in the best way you could at the time. Especially in talking with Ben.

Here's to next weekend! Hopefully that kind of thing won't happen again. I think I'm heading up to FU for the WoCo game. Hate you won't be there, but I'll cheer really loud for you!

Sorry for the long post.

Gretchen said...

Bennie--I love anonymous's post, please add it to your blog! Anon-I'm a mom of a PKS child too, and your questions were wonderful, not rude and not offensive at all!
I think what you say here is absolutely correct: "and I think that is part of hte problem with many parents-- they are trying so hard not to offend & to be PC, they just end up saying... nothing."

bennie said...

Anon, I agree with Gretchen. Excellent stuff and I didn't find anything rude whatsoever about your questions. In fact by asking them you're offering part of the solution! I'm also going to take G's advice and use your comment as today's blog post.

Kimmy, that was a purple washcloth drying on the back of his wheelchair. I hadn't even noticed that before. Now it's the only thing I can focus on!

Sarcastica said...
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Sarcastica said...
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JC said...

I'm sorry that happened Bennie, kids can be cruel. I remember I went camping with the recreational group for the developmentally challenged I worked at and the cabin was in a Boy Scout park. We decided to go for a walk and at the same time, one of the Scout groups was going for a walk. The boy heard one our our guy's talking and started to laugh at him. Then they threw pinecones at him and everyone else we were with.

We filed a complaint to Boy Scouts of Canada because their leader did nothing to stop it.

I also blame society and the educational system.

cmhl said...

Bennie--- anonymous was me... I'm not really sure why I didn't identify myself-- maybe because I am "taking a break.." whatever. I'm glad you took the question as it was intended-- I feel slightly ashamed that as a reasonable (?) adult I really don't know what is acceptable and welcomed, and I'm also regretful that I really don't know how to best tell my kids to interact with other kids that might be different. thank you for seeing through the verbage to see that I was sincere with my desire to know how to interact and what to say!!