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BADD 2011: A Glimpse of Success

  • Posted on May 1, 2011 at 6:07 PM

Perhaps it’s the timing, perhaps it’s my unpreparedness, but I’m going to share a recent, deceptively simple success story.  The Goldfish hosts Blogging Against Disablism Day on May 1st every year, as she has for several years now.  So, you’d think I would be prepared.  You’d think I would realize that BADD is coming up fast.  Unfortunately, considering my hiatus and the time it’s taken me to get back in the swing of trying to keep track of all the blogs I enjoy reading, I find myself caught a bit unprepared.  Normally, I would take this as an opportunity to veer away from the easy-come-easy-go of family anecdotes, and concentrate on something deep and important.  But, maybe, I can do both.  Either way, yesterday (Saturday, April 30th), is worth writing about.

As some may know and many probably don’t, I’m the mother of three children with autism, I’m the wife of a man with a diagnosis of bi-polar disorder, I have diagnoses of depression and OCD myself, and both my husband and I are somewhere near the autism spectrum too.  Our disabilities are not physical.  You cannot look at us and say, “Hey, now those people are disabled!”  (For those who don’t get the point of this who BADD thing, you shouldn’t be saying that anyway, but that’s not my point.)  The point is, in big ways and in small ways, I find myself constantly advocating for the need for accommodations and for advocacy itself.

{I’m not, by any means, trying to suggest that people with physical disabilities have it easier.  I am well aware that just because a need is readily apparent, doesn’t mean it will be considered or accommodated.  I still remember, quite clearly, and in part from expanding my personal blogging community to a wider array of disabilities, the moment I looked at one of those bathrooms—you know, the ones with the sign—and realized that no matter how accessible it was inside, there was no practical way for someone in a wheelchair to OPEN THE DOOR independently.  I remember the light coming on in my head.  I remember that moment of insight, and the indignation that followed, with “How dare they advertise this as accessible!” reverberating through my skull.  And, while that incident was special for me, in the sense that it got my mind to shift, it was far from an isolated incident.  So, I’m not belittling the advocacy needs of those with physical disabilities.}

I do, however, get so very tired of having to justify over and over and over and over again why my family has advocacy needs to people who just don’t get it.  It is tiring.  It is exhausting.  And sometimes small moments of ease are the only things that keep me going, keep me hoping.

So, what does that look like?  Success?  Ease?

Yesterday (Saturday, April 30th), my husband had some friends over to do some role-playing.  This is something they try to do every weekend.  Like a guy’s night in, instead of a guy’s night out.  So this, in and of itself, was nothing extraordinary.  One of the guys is a long-time family friend.  He was at our wedding.  Our kids are good friends; they’ve grown up together.  His wife has been a therapist for our children.  They’ve babysat.  Or, to be brief, he knows what he’s getting into when he comes over.  The other two are newer.  They’re both a bit odd (for me, that’s a compliment), but they’re odd in ways that are not our ways (which is just fine with me).  And so, again to be brief, they still really don’t know what they’re getting into when they come over to our house, but they’re willing to risk it.

We usually have a bit of preparation for these nights.  We know the day is coming.  We build up to it.  It’s usually on Fridays.  And, well, this time we really didn’t and it wasn’t.  Or, to be brief, it was not an ideal situation.

Mark’s sleep-cycle was wonky and the kids were a bit wild.  Usually, this would be a problem.  For your random individual (or group), this would be a problem.  Surprisingly, this time, it was all okay.  It worked.  The night was a success.  (The gaming was not so much, but that’s a whole ‘nother thing for a whole ‘nother blog, which I’m not going to write, but hey—role-playing can be tough.  It is, after all, storytelling, but with free will.)

This is not to say there weren’t problems.  Mark fell asleep twice during the night.  The boys’ had issues that needed to be dealt with, including Willy not wanting to play anymore, including Ben trying to push a chair down the stairs, including Alex pinching our guests.  And, well, a complete list isn’t the point.  There were issues.

But they weren’t a problem.

Novel, I know, but it’s true.  The boys’ needs were discussed, as they often are around people who haven’t known them long enough to be fully versed, but they weren’t an “issue.”  Everyone just sort of went with the flow and it worked.  When explanations were necessary, they were given, they were accepted, and we moved on.

It wasn’t:  WOW!  YOU PEOPLE ARE WEIRD!  It wasn’t even:  MY FAMILY IS DIFFERENT AND THAT’S OKAY.  It just was.

And, for me, that’s success.  Explanation.  Acceptance.  Move on.

Maybe it’s lack of imagination, but I really don’t envision a time where everyone just understands.  I communicate with a lot of people with a lot of different kinds of differences, from disability-related differences to faith-based differences, cultural, racial, life-style…and on and on.  I try hard, but I don’t just understand.  I need things explained to me.  I need the stories.  I need the shared-experiences.  I need those moments of insight.  And I expect that I always will.  I don’t think that’s just me, either.

The thing of it is, I do believe there will come a time when everyone—or at least the majority of people—will be open to having things explained, to listening to others’ stories, to sharing experiences, to moments of insight.  I think that will happen.

And it’s going to look a bit like last night did.  An easy, comfortable exchange; welcome to my life, beware of the pinching; yes, we have alarms on our doors, because our children will go out to look at the cars…the ones that are moving.  This is our life.  We’re open to sharing it.  But it’s so nice when our differences are not a big deal.  They just are.

Bev and Bruce Say It Well

  • Posted on September 30, 2009 at 1:16 AM

Asperger Square 8 has a new post definitely worth reading.  Beautifully written and deeply meaningful, Bev addresses the news that Bruce Springsteen will be performing a benefit concert for Autism Speaks.  While her entire post is worthy of a good read and a good cry, I want to respond to these words:

Those who defend Autism Speaks will tell you that people with “real autism” can not speak for themselves. Some will go so far as to say that these “real” autistics cannot communicate at all.

My son, Alex, is one of these “real” autistics.  He does not speak, at least not in the sense that his vocalizations consistently and effectively communicate.  However, that does not mean he does not communicate, though it does mean he can be difficult to understand.

Yesterday, I was speaking with Ben’s therapists who were playing with Ben in his room.  We had plumbers over doing smelly things in order to bring our upstairs bathroom back to life – without the constant sluicing of our kitchen cupboards.  So, to release the smelliness we had the windows propped open.  One of the things I used to prop open a window was a box (100+) of crayons that were upstairs as part of Ben’s therapy supplies.  Alex saw the box of crayons and wanted them.  Alex loves to color and he goes through crayons rather quickly and removes the paper and breaks them into smaller pieces for his own, unknown reasons.  So, Ben has his own crayons that haven’t been Alex-ified.  And now Alex wanted them.  After all, he hadn’t had new crayons in two whole weeks.

I told Alex I had other crayons for him and these were Ben’s.  Alex accepted that answer and we both went downstairs, and I went all the way to the basement to get a little work done.

A few minutes later, Mark came down with our merry little catch phrase: “Just in case you didn’t know, our kids are weird.”  This is not said to be derogatory.  It’s just one of the things we say to capture the chaos that is our lives.  It could just as easily be me saying, “Just in case you didn’t know, my brain is weird,” with me then launching into one of the strange places my thought patterns had taken me this time.  So, Mark came down to describe an oddity to me.

This time it involved Alex, who regularly leads people to things he wants in order to communicate.  Alex took Mark by the hand and led him to the living room (which happens to be by the stairs that lead up to Ben’s room).  Then, Alex pulled Mark across to the other side of the house to get a piece of paper off the pile in the den.  Then, he pulled Mark back to the living room.  Knowing nothing of the exchange Alex and I shared moments ago, Mark was understandably baffled.

I knew exactly what Alex meant, however, so I handed Mark the box of new crayons I had tucked away for Alex.  Then, Alex contentedly peeled, broke, and colored away for most of the evening.

It certainly would have been easier if Alex could have said, “Dad, Mom said I could have new crayons and I would like them now, please.”  But Alex cannot say that.  That does not, however, mean he cannot communicate it.  The key to communication is not what you say, it’s what the person you’re trying to communicate with hears or observes.  Because Alex communicates in a way that is difficult for others to “hear,” we often need interpreters to understand him.  In this case I was the interpreter, but other times I’m the one who needs the interpreter.  Someday, when he’s ready, Alex will try to communicate with a bigger audience.  Hopefully there will be people willing to “listen” no matter how he is tries to communicate.

Run for Autism

  • Posted on September 6, 2009 at 12:00 PM

I’ve seen many attempts to raise funds for autism research, most of which I’ve refused to participate in.  The only autism-related fund raising I’ve contributed to is the fund for our local respite program.  However, I’ve recently learned more about OAR (Organization for Autism Research) and I think it’s something I might be able to support.  I’m still not entirely swayed, but I’m open enough to the idea to post the following news from an e-mail sent by Michael V. Maloney, OAR’s Executive Director:

The RUN FOR AUTISM – Chicago is OAR’s largest fundraising event of the year.  This year, The Bank of America Chicago Marathon launched a fun and interactive opportunity that allows you to leave your “digital mark” on the Windy City in anticipation of the marathon on October 11th.

We invite you, your friends and family to log-on to www.chicagomarathon.com/footprint and create a free personalized digital footprint, which includes a shoe tread, personal photo, quote, and your support for OAR. Just select “Run for Autism - Organization for Autism Research” from the charity dropdown menu and create your footprint. Be sure to save the jpeg image so you can share your footprint others, inviting them to log-on to create their own footprint and show their support OAR.

The first 50,000 people to create their footprint will earn $1 donation to charity of their choice, including OAR. You don’t have to be a RUN FOR AUTISM participant to make your mark on Chicago this fall; create your footprint today and spread the word.

Now, I’m not planning on joining the run for autism.  I’ve been to Chicago – twice.  I’ll go again, but spending $30 + (not including gas, food, or other expenses) to participate in an event just isn’t in our budget.  Especially when I’m not 100% on-board with the organization.  However, leaving a footprint sounded worthwhile.

It’s a little hokey, but it gives you the opportunity to choose from a variety of charities (including OAR, but not them exclusively) for a bank to donate money to, which seems like a good cause just about any way I look at it.  If you’re going to do this, you have to design your footprint by October 9th!