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Alex and His New Glasses

  • Posted on July 13, 2012 at 8:00 AM

So, we got Alex’s new glasses—glasses without hinges but with an elastic band (which he doesn’t really care fore). We’re starting off a little better with these, but he still takes them off for longer stretches than he actually wears them. The band doesn’t deter him from putting them back on with prompts, though, so I’m hopeful that these glasses will stand up to Alex’s peculiar wear and will be something he actually, eventually wears most of the time.

As for me, I’m desperately struggling to catch up with work while still worrying about Willy’s seizure activity…so this is going to be a short post, but I’m hoping next week will start out with some really exciting news.

Success Can Be Its Own Adversity

  • Posted on June 11, 2012 at 8:00 AM

One of the common threads in discussing autism, Asperger’s and associated neurological differences is the challenge of discrimination and the lack of opportunity.  One of the threads that seems less common, if not entirely ignored, is the adversity of success.

With success brings the expectation—often overwhelming—to perform successfully.  This is emboldening when that performance is accessible, but it can be extremely disheartening when that success is out of reach.  As many of us know, ability is variable.  Some days we can do more than we can on most days.  Some days we can do less that we can on most days.  What we can do any given day, even a normal day, isn’t the same from day to day.  Add the stress to perform and that variability can increase exponentially.  Now this is, to a degree, true for everyone.  With autism, this variance is heightened and enunciated in a way that seems dramatic, even odd.  It makes the normal level of unpredictability seem predictable in comparison.

What makes this especially unfortunate is the days that we must perform are not always the days that we can perform.  I see this in my children and in myself.  These are the days when our successes come back to bite us.  We are expected to do, so we try, but we can’t and the frustration mounts, making it even harder to do and even harder to explain why we can’t, because everyone already knows we can or, rather, that we could without seeing the difference between the two.

How do you deal with success?  How do your children deal with success?  Do you give yourself or your children permission not to succeed even when you know, on another day, at another time you or your children could do what they can’t do at the moment?  It’s hard to do so, but it’s necessary.  Some days we can.  Some days we can’t.  Even when we usually can, there are still some days when we simply can’t, try as we might, as much as we want to, it’s just simply inevitably and unalterably out of reach.

Thriving and Flying

  • Posted on March 30, 2012 at 8:00 AM

I feel kind of like a baby bird pushed out of the nest by its mother, forced to fly and fend for itself.  The analogy doesn’t quite fit—I’m not a baby and this isn’t the first time I’ve been on my own—but the feeling lingers despite the obvious discrepancies.

Last week I took Alex and Ben to the Feeding Clinic.  Brief recap:  For years these two little ones have struggled with below-the-charts growth, severely limited diets, inadequate nutrition, and the threat of “failure to thrive” diagnoses.  We took them to the Feeding Clinic to “fix” this, and apparently we’ve succeeded.

My boys are hardly weighty fellows.  They’re on the growth charts now, but the 90/10 trajectory (in Alex’s case) persists—that’s 90th percentile for height and 10th percentile for weight, or tall and skinny in lay terms.  Ben isn’t quite so tall, but he’s on the skinny side.

We’ve done all we can.  They’ve maintained their own growth trajectory, we’ve succeeded in introducing needed nutritional supplements (meaning they actually consume them), and they’re all-around healthy.

All good things.

But now the visits to the Feeding Clinic are at an end.  They’re not needed any more.  The great, supportive team that has helped us so much and have supported us so well, have succeeded and are no longer needed.  And I know it’s time.  It’s just that…

I’m going to miss them.

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.