nonplussedpilot

Saying my son has autism to a stranger won’t make me feel guilty.

I received a bunch of feedback regarding my run-in with the little girl and her grandmother at the playground yesterday.  Thank you to all who responded.  Your kind words are reassuring.

The gist of the feedback was that I was being too hard on myself, and that I did what I could do in an emotional situation with as much equanimity as I could muster.  Well, I guess.  As I mentioned, I don’t like to whip out the “autism card” and wave it around, expecting special treatment.  But my feelings about “just saying it” have now eclipsed any guilt, personal pride or embarrassment I might have.  If it’s going to mean less anguish for my son, I’m going to do it.  I’m crossing a long bridge here.

Another wrote me wondering what the hell happened to children just obeying adults–on the playground at least.  That’s a good question.  I recall that if an adult spoke to me about my behavior in public–stranger or not–I heeded their words.  It seemed like it always would get back to my mom and dad, that’s why.  What has changed in the 38 years since I was 5?

Still another wrote that maybe what appeared to be a little stuck-up brat of a girl was perhaps herself not “neurotypical”.  And perhaps this grandmother was in a similar situation as me, ie. not knowing just what to say about the child’s behavior.  The grandmother sounded like she wasn’t born in the states, so maybe there were cultural differences.  It’s possible…

But not likely.  I still don’t buy it.  The whole episode still ticks me off.  As my friend Susie said, “Where are the other parents who “got your back”?  Isn’t the whole point of taking your kids to a playground so they won’t have a meltdown?”  Was granny really that clueless?  And what of the little prima donna?  A little sheltered, perhaps?  Wake up, kid!  You’re gonna need the clue I’m about to give you.

At the end of the day, I’m left with the understanding that so many people still think everybody is normal.  All kids talk in complete sentences and play ball and tie their shoes and listen obediently to their elders.  They brush their own teeth and sit calmly in a movie theater.  They understand the concept of “personal space”.

But everybody is not normal.  Some kids grunt and whine instead of saying “I love you” and will dash up to you in a restaurant and try to help themselves to what you might be eating.  Some still wear diapers and grab handfuls of feces and smear them across the walls of their houses.  It makes me tired just typing that.  Walk a mile in my shoes, indeed.

So, yeah, no more fear, embarrassment or shame.  My son has autism.  Deal with it.  And get the hell off of the swing.  It’s his turn.

How about their grandmother?

Aware of what, you ask?  Let me tell you…

I just had a horrible encounter with a child and her grandmother at the local playground.  8 hours later, I am still furious and disgusted.  In fairness, some of my antipathy is reflected back at me.  I made a bad situation worse.  I won no Father Of The Day award today.

It had been a beautiful day so far here.  Bright blue skies, fresh breeze carrying the scent of autumn, cool temps in the mid 60’s–a great day to be outside.  Which was a good thing, too, because Alex wasn’t too keen on staying indoors.  He had been itching to go outside pretty much since he got dressed this morning.  In his non-verbal way of requesting, he will either bring me a photo of said item or just stand by the front door–that’s Alex code for “what I want is outside”.  Going outside could mean he wants to run around the yard, or get into the wagon, or perhaps go for a bike ride.  Or maybe go in the car…

Well I am no pushover, but…Alex’s sometimes incessant whining is like the sound of nails on a chalkboard to me.  And when he peppers his impatience to the fulfillment of his demands with quick jabs of his rock hard fists to his head, it gets a reaction from people, including his dad.  Lucky for Alex, I was ready to go.  I’ve learned to dress as quickly as I possibly can each morning, and to wolf down my breakfast just the same so I can devote my attention to him.  Usually Kat gets to sleep in on Sunday mornings, and Drew does his own thing in the morning, too, so it’s pretty much up to me to keep Alex placated.  Today was no different.

Suffice to say, Alex and I went outside plenty.  He, however, seemed more edgy today than in recent weeks.  A little easier to upset.  I’m not going to go into the “how’s” or “why’s” of that right now–it’s not directly relevant to what happened.

But what did happen was this:  I took the kids and Kat in the car to check out our local park district arboretum.  We’ve been there many times before.  It’s located on a generously sized park replete with pond, ball diamonds, walking paths and a most well-equipped playground.  And the arboretum is nice.  Trimmed flowers, fountains and more, a toy train set making endless loops, even white doves in a big cage.  The hours of operation are 10am to 3pm on Sundays.

I did not know this.  We arrived at 3:10pm.  Strike one.  Alex, already restive and seeing the locked door, melted down into a puddle of screaming, crying and fist flailing.  Kids with autism tend not to handle denial of routine or something promised very well.  They can’t always just “go with the flow”, as typical kids learn to do at an early age.  Alex was again breaking out the highlighter to point this out to me.

While Kat took Drew to explore the portion of arboretum that wasn’t closed, I attempted to redirect Alex.  Redirecting is a term I have heard Alex’s teachers and therapists using often as a strategy to essentially distract him.  It works, too, most of the time.  With more than a little prodding, I was able to shepherd Alex, sobs and all, toward the playground.

This playground has one feature that Alex loves–a rigid, chair-shaped plastic swing.  From what I am told, these swings have been appearing at many new or renovated playgrounds.  They allow kids that don’t have the strength or coordination to sit on a regular swing or who might be too big to be lowered into the confines of a baby swing.  They are perfect for Alex.

Alex has shown great affinity towards riding in a swing all his life.  We even have one inside our home just for Alex’s needs.  He seems to like that feeling of pressure from the centrifugal force and the repetitious back-and-forth.  I’ve pushed him for what must have added up to days so far in his life.  I’m completely okay with that, by the way.

As we walked across the park towards the playground, I could see this single swing being used.  Not one of the other 7 swings, just the one Alex prefers.  No big deal, I thought.  By the time we get to the playground, Alex will be fully calmed down and the swing will be empty.  A few minutes on the swing and he’d be great for the rest of the afternoon.  That was the plan.  I followed closely behind Alex as he approached the swingset, the wood chips crunching beneath our feet.  I made sure that he didn’t get too close to the pendulous red plastic seat.

The playground was packed with little kids and at least 8 moms, each with a stroller and a toddler or two.  These ladies sat on benches surrounding the swings, chatting with each other in Slavic, Polish or Russian.  But not much English.  Which is just fine with me.  I love the diversity of our neighborhood.

None of this was important to Alex.  All he was focused on was a little girl, probably 5 or so, still occupying his favorite swing.  She had long, flowing curly brunette hair and wore a tidy, fancy, bright pink outfit with a coordinating faux fur vest.  Definitely not something her mommy purchased for her at Target, I thought to myself.  She was being pushed back and forth by what looked like her grandmother, a gray haired lady speaking broken English to her with a thick eastern European accent.  The entire time the girl clutched a stuffed animal beneath her left arm, a large black and white striped tiger.  And she wasn’t even smiling.

I tried to keep Alex away from the swing while it was in motion, telling him he would have to wait a little while longer until it was his turn.  As far as Alex was concerned, it was his turn.  Hell, to me, it was Alex’s turn too.  From when we first walked toward the swing to now had been at least 7 minutes.  But still the girl swung back and forth.  Finally, Alex had enough waiting and broke down again, fists flying into his face, tears of anguish and disbelief spilling out of his eyes.

I pleaded with him to calm down, to relax–loudly now.  Loud enough so the girl and more importantly, the grandmother, could hear that, yes, there was at least one other inhabitant of this planet that might be interested in using–nay, sharing–that device that she was using.  This just pissed Alex off more.  He collapsed onto the dirty wood chips.  Now pretty much everyone, child and adult, was looking at us.  Strike two…

After what seemed to be an eternity, I could hear from behind me the grandmother saying “Layla, time to let someone else use the swing…”  I turned to see her slowing the motion of the swing while I scooped up my now hysterical Alex.  I looked at the girl and held my breath as I expected her to obey her grandmother and slide out of the seat to allow Alex a turn and finally calm himself down.

It never happened.  The little girl just sat there.  She said nothing.  She didn’t move.

The grandmother turned to me with surprise in her voice and inexplicably said “I cannot get her to move!  She will not get out!”  Now I was the one who was out of patience.  I turned to the girl in probably the most measured but stern voice she has ever heard and begged, “Layla, may my son please have a turn on the swing?”  Alex remained, writhing in my arms.  My words dripped with venom.  With a self-centered, dismissive turn of her head, the girl just looked away from us.  Again, she said nothing.

I was blown away.  For a split second I wanted to explode at the little spoiled brat and her spineless grandmother.  Seething, I simply said “Okay…Alex…I guess we will just have to go home then.  They don’t want to share.”  Everyone in the playground heard that.  Strike three, Dave.  You’re out.  I lifted Alex into my arms and walked back across the park toward my car.  There was probably steam coming out of my ears at this point.

I’ve been thinking about my actions ever since I left the park…how I could have handled the situation differently, better.

For one thing, I should have known the arboretum was closed.  Alex wouldn’t have been disappointed.

And when the girl on the swing wouldn’t budge, I would have pulled out the “a” word:  autism.

Now, I do not like to be in public telling each and every bystander that the reason my son is the combined personification of a bumble bee, hummingbird and hyena is because he has autism.  Frankly, I would have hoped that people would already know.  But, since Alex appears normal physically, I can no longer make that assumption.  I will have to say it to everyone–including Grandmother Clueless and her stuck-up granddaughter Layla.

I used to think that the bumper stickers with the slogan “autism awareness” were kind of redundant, or irrelevant.  I mean, who doesn’t know about autism in this day and age?

I don’t anymore.

And for all of you–my friends and family who know what autism is, and helped support Alex by donating to the Answers for Autism walk last weekend, I thank you.  This awareness is crucial.  The lack of it bitch-slapped me today.

I received a phone call from a friend last week.  I didn’t answer it, though.  I let it go to voicemail.

I felt guilty.  I don’t normally do that.  If I get a phone call from just about anybody, I answer–especially if I or my phone identify the number.  In fact, most people have praised me for always being reachable via cell.  Just being polite, I guess.  But like a lot of parents right about now, I was up to my increasingly lengthy nose hairs in something kid-related.  It’s been a stressful, hectic past two months.  Sometimes I’m just not polite.

Alex has been on a cocktail of different medications for about 18 months now.  Some drugs added, some taken away.  Quantities tweaked ever so slightly.  All of this psychiatrist-prescribed pharmacological tinkering has resulted in a more calm, less reactive little boy of ours.  Most of the time.  Like life with autism in general, “always” doesn’t seem to exist.

For many months I have been dutifully logging Alex’s sleep cycles.  And with it, his different meds.  Since October, Alex’s in-home ABA (applied behavior analysis) therapists have been doing the same regarding his behaviors–self-injury, tantrums, non-compliance.  Everything is tallied.  What we have now, and continue to amass, is a reasonably clear record of how all these actions of his are tied together.  Patterns emerge.  Most importantly, we see how these psychotropic drugs might help or hinder him.

That’s good, too.  Because the very thought of giving any behavior-modifying drugs to a little child of 4 (now 5) was spooky to me.  My narrow, naïve brain felt that long, strange-sounding names like Resperdal, Clonidine and Gabapentin were for big people who had some big issues.

What sucks is our little Alex has some big issues.

His self-abuse increased markedly about 2 months ago.  He’d be very short-tempered, easily agitated.  His captivating smile and juicy giggle were absent.  This was noted everywhere he went–school, OT, at the playground and especially by his ABA therapists.  As fast as lightning, he would punch himself in the face.  Simply telling him “no” could easily set off a long, brutal-to-watch head banging session.  Thank God we always have his helmet nearby.  He was wearing it frequently lately.

Besides the obvious danger inherent in self-flagellation, the trouble with all of this self-injury is that it gets in the way of real “work”, real learning.  Alex needs to be taught how to do things, how to be patient, how his world that is likely very, very confusing to him works.  He does not need to spend any part of his day slamming his head into the wall because he cannot have a piece of candy.  We had to quell this behavior.

I think we found a reason.  In recollecting any changes in any part of Alex’s daily existence with his psychiatrist, I remembered that about two months ago I had been able to finally get Alex to ingest his meds mixed with food.  Up until this point, Alex would not tolerate any pill or elixir in his mouth.  It was almost as if he knew what they were and was saying, “Oh no you don’t!  I’m not swallowing that crap!”  So…for 16 of the past 18 months or so, the only way we could get Alex to swallow his medication was to crush the tablet and mix it into his infant (safe to swallow) toothpaste.  I noted there would always be some residue of his meds left over on his toothbrush.

I surmised that with him eating his entire dose of medicine, he was suddenly getting more than he had ever been getting in the past–too much, it seemed.  Which triggered his negative behaviors.  Alex’s psychiatrist agreed.  Too much of a good thing is a BAD thing.

So we tapered off with one of his meds.  Two weeks later, we stopped it altogether.  Alex had a decrease in self-injury almost immediately.  That positive, heartening trend continues.  And what I keep learning about just keeps growing.  That’s okay and fine and all.  But I certainly embody the words “bemused” and “chagrined”.

All this commotion over Alex has leached energy away from Kat and I.  Days are long.  Drew is out of school now for going on a month.  Alex joins him next week.  Work weeks of 40+ hours continue.  Kat pulls the same.  Emails don’t get read.  Messages don’t get returned.  And phone calls drop off to voicemail.

As I mentioned, I’m not typically like this.  I love people.  I love my friends.  I love talking with them, catching up.  Heck, I’ve even enjoyed this blog.  But with Alex showing signs of regressing, all of that takes a lonely back seat.  And every night, in addition to my prayers for Kat, Drew and Alex, I always pray for my friends.  And that I can keep being just that–friends.

There’s hope.  Alex is responding positively.  We are learning more about him.  And to my inability to chit-chat with my friends as I once did, or just return a phone call–my true friends get it.  They keep being my friends.  I am humbled and very, very fortunate.