Before She Knows It…

I was at Trader Joe’s yesterday picking up a few items when this woman speaking loudly came walking toward me.  She was likely in her mid-60s with one of those Bluetooth contraptions in her ear … you know, the thing that often leaves people (including me) thinking that the person is talking to you when they’re actually talking to someone miles away.  At first I thought this was the case when I realized she was talking to an older man walking right behind her.

It took 30 seconds to size-up the situation – she was the grown daughter who had taken her father to the store for some needed items.  He was moving slowly and standing in odd places in the aisle, looking as if his nap had just ended or he needed a shower.  Not dirty but disheveled.  Bothering no one. She, on the other hand, was nicely dressed and wanted her father and the rest of the store to know that she wanted to be somewhere else.

At first when I heard her say, “I hate shopping,” I thought she meant it as a general statement.  But she meant with him.  In a tone that was agitated and clearly not an “inside voice,” her comments and statements continued … “Dad…what are you doing?”  “Would you just stand here and stop moving.”  “Why are you looking at bags of nuts…you don’t eat them.”  It was an endless barrage of these barbs along with overt sighs and complaints under her breath.  On and on this went with customers ignoring the entire situation, too wrapped up in whether to purchase the oriental pot stickers or tamales.

I stood there in total disbelief at the verbal abuse this man – this woman’s father – was experiencing.  I kept trying to catch her eye to perhaps offer a gentle, “It’s okay, it’s your Dad” comment to her, but to no avail.  I then considered walking up to tell her to knock it off.  Then I considered informing the manager although questioned whether anything could or would be done.  Instead, I followed them around the store, pretending to be looking at items I never buy.

After making my few purchases, I waited outside until they emerged.  It was raining and she wanted him to wait near the front of the store while she went for the car.  For a moment I thought, “Ah…there you go” but her, “Can’t I get away from you for a minute” comment brought me to tears.  Her father was visibly unsure about standing there alone, but her voice continued to raise as her yelling persisted.  To stop moving.  To listen.  To stand near the bags.  It was elder abuse, something I understood painfully well as my own father suffered the same when he was in a nursing home.

I’m typically an “act” person – stepping in when someone is in need.  Yet here I hesitated because I wasn’t sure what to do.  I wanted to pull her aside and tell her to straighten up.  I wanted to tell her to look at her father to see how frail he was.  I wanted to tell her that she disgusted me.  Instead, I stood there to be sure he remained where she insisted he stay as she walked into the parking lot continuing to yell at him.  I returned to my car, outraged and in disbelief.

There’s no way to know what stressors are in this woman’s life or what happened to her over her lifetime.  Yet of this I am certain … when our parents reach the age where they need us to parent them, we’re obligated to do for them what they did for us when we were children – to care for and protect them and to keep them safe.  For whatever the reasons, this woman remains part of her elderly father’s life and I can’t help but wonder what he may have been thinking and feeling during this display of such disrespect and disdain.

One thought haunted me all day and continues…before she knows it, he’ll be gone.  No more shopping.  No more talking.  No more visits.  No more anything.  The end.  Finished.  Over.  A relief to her?  Remorse?  Guilt?   Regardless, no more Dad.

Maybe they never had a good relationship.  But maybe at the twilight of his life, he needs her to help him live out the rest of his days with kindness, forgiveness, and peace.  We can’t change yesterday and wounds surely remain.  Yet before she knows it, he’ll be gone.  And then what…?

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When One Small Step Is Anything But Small

People tend to believe that it’s the big things in life that have the most significance, but I don’t necessarily agree.  Small things often make the greatest impact, and one group of people know exactly what I mean.

If you’re the parent of a typical child, there are so many “firsts” and accomplishments that the small steps often get lost in the shuffle.  Not so for parents of children with an autism spectrum disorder.  For these parents, life is all about watching for the smallest possible step.  About knowing the minutes, days, and months of effort that went into making this step happen.  It’s often only those closest to the child who can understand and appreciate what this is all about.

Ever sit and watch a flower bloom?  You rarely see anything, but look away for a day and the changes are often amazing.  Parents of children with autism spend much of their lives closely watching for that bloom to happen … for that “one thing”, that small step that will show them that their child is learning to speak, respond, play, understand.  And they see it when it happens.

This past week, I spoke with a parent who was sharing how her child was finally able to tolerate something that had been – up to that point – intolerable.  For most parents, this would have been seen as a “get over it” moment, but not for this parent.  It was a huge obstacle that impacted her child’s ability to function and the family’s ability to function as well.  Anyone who would say that a small step isn’t a major milestone is someone whose life hasn’t been touched by autism.

Think about it this way…most people stand back and look at life like admiring a huge mural painted on the side of a building.  But for parents of children with autism, they’re standing right up close, seeing every single stroke of the brush.  When your child struggles on a daily basis in a world that assaults their senses and challenges their abilities, every step forward is anything but small.  These parents know what they’re looking for and even if they don’t, they still see when something changes or some progress is made.  That’s because they’re always looking and hoping for it.

That infamous line…”One small step for man, one giant leap for mankind” are words that ring true for each and every parent of a child with autism.  Every small step their child makes is a leap indeed, for it paves the way for a future of possibilities.  And possibility is that wonderful thing that keeps parents moving forward.

Life is about giving and receiving and I don’t know any single group of individuals who give more than parents of children with autism.  So isn’t it wonderful that one of the things they receive is the ability to see these small steps happen right before their eyes?  Whoever said that you can’t watch a flower bloom never knew what they were looking for.

And It Gets Harder As *They* Get Older

I’m a major Crosby, Stills, Nash & Young fan and their song “See The Changes” tops my list of favorites.  So I hope they won’t mind that I’ve changed the word “we” to “they” because I’m talking about children.  It does get harder as they get older…much harder.

Ask any parent and they’ll tell you in vivid detail the age and stage that was the hardest for and with their child.   Every parent knows well when the bags under their eyes deepened because of lack of sleep, worry, or worse.  And for parents of children with Asperger’s Syndrome, the stage can be ongoing.

During the preschool and elementary years, bullying and exclusion can often be the norm and because this is when a child develops his or her sense of self as it relates to peers, the impact can be indelible.  Move into middle school and the social learning that may have occurred earlier now seems to have little relevance because talking about frogs and admiring each other’s shiny lunchboxes has shifted to Facebook and exposure to things that were never in our purview when we were kids.

High school arrives and so does dating, texting, sexting, driving, and a host of other social pressures driven by social media and often crippling adolescents with Asperger’s … or leaving them in a state of constant struggle, trying to figure out what’s happening around them and what they’re supposed to do about it.  These school years alone and the issues that emerge are enough to weaken even the strongest parent, but it doesn’t end with high school graduation.  No…the real challenges emerge when college and life hit – often like a mack truck.

Parents of younger children with Asperger’s work hard to build a foundation of social understanding in preparation for the teen years.  Parents of teens say that their worry (and hope) is that they have solid footing in social thinking to be their compass for what comes next.  Yet for many, this simply doesn’t happen because the freedom that accompanies English 101 and on-campus parties results in difficulties beyond what many parents anticipate.  And when this happens, all bets are off.

Parents typically relish when their children start college because they believe – rightly or wrongly so – that their job is basically done.  Not true for parents who know that, despite the fact that their child may be 18 and have a 4.0 GPA, they simply aren’t prepared for the demands of young adulthood.  And hearing college administrators tout at parent orientation, “Your child is now considered an adult” just doesn’t apply…at least not concerning their child.  The word “vulnerable” describes it best.  And with it comes a host of issues that have real world consequences for which an explanation of Asperger’s Syndrome holds little weight.  Worry intensifies…and with good reason.

Just as life gets harder as *we* get older, it also gets harder as *they* get older.  Watching a toddler stumble is expected.  Watching a college-age child do so is something entirely different.   The world suddenly expects more from them.  They expect more from themselves.  And parents hold their breath because getting older is only part of it…