To Those Who Care

My boy was having a rough time this morning.

The pollen apocalypse hit us full force about a week ago.  Even The Mighty Footloose was brought to his knees, coming home from school with puffed eyes, flushed cheeks, and hurricane force sneezing that I’m reasonably sure could take down a brick house (like the one we happen to live in).

Allergy season always takes a heavy toll on him, but we’re usually able to get him back on his feet through judicious application of Zyrtec and Benadryl.  Turned out that wasn’t going to be enough this year, with the pollen counts reaching in the quadrillions.  So of course this meant a trip to the pediatrician and a request for the only thing that ever seems to help pull him out of a sinus allergy nosedive:

Oral steroids.

Before we proceed, I would ask you, the reader, if you’ve ever had to treat your child with oral steroids.  If you have, you know that they can essentially turn your docile, loving little one into a gamma irradiated monster.  They get hyper.  They get moody.  Now take that and apply it to a barely verbal, autistic 6-year-old with sensory issues.

I think you can see where I’m going with this.

It’s been a week of wild mood swings, lack of sleep, and more than a few meltdowns.  Still, you do what you have to do, and the allergies seem to finally be under some kind of control.  Footloose’s irritation, not so much.

Which takes us to this morning, and the pick-up for school.  He seemed perfectly content on his walk down to the bus-stop,  despite the fact that he woke up screaming at 4:30 this morning (if you can really call it “morning” when the sun hasn’t even come out yet).  Between breakfast and non-stop viewings of the final five minutes of “Disney’s Mickey and the Three Musketeers”, (no that’s not a typo, I had to keep skipping back to the last five minutes so he could hear the end-song he loves) he seemed to be good to go.  At least, right up until the moment the bus doors opened.

Than it was meltdown time.  No sooner did he get up the steps of the bus then the screaming started and he threw himself straight to the floor.  This is not typical behavior.  He usually LOVES the bus and gets on with no issue whatsoever.  With all the craziness and disruption to his routine, though, he was just having a really hard time.

Which is why I’m so very grateful for Ms. Connie and Ms. Sherrie.

Ms. Connie drives the bus, and Ms. Sherrie is the monitor.  I’m also convinced that they  freelance as guardian angels, because they have always been so wonderful with my boy.  They’re patient.  They’re calm. They’re understanding.  They always go out of their way to make him feel safe and comfortable, not to mention all of the other kids on the bus.

You could say “well that’s their job”, or “he’s entitled to lashing out! He’s autistic and they just have to respect that!”, but I just don’t see things that way.  First of all, regardless of what kind of population someone works with, I believe that an individual who chooses to go above and beyond for someone deserves recognition.  There are plenty of people who “just do their job”, not nearly enough who treat that job as an opportunity to improve someone else’s situation.

In regards to his “entitlement” to lash out, I think we have to be realistic.  He’s autistic.  That means that sometimes he goes into sensory overload or gets incredibly frustrated because he can’t communicate what he’s feeling.  This leads to “meltdowns”, which are really just his way of getting his frustration out.  That said, throwing yourself on the floor and kicking it isn’t seen as a socially acceptable means of doing so.  He can’t help it.  It’s not his fault, and I would take issue with anyone who tried to argue otherwise.  That still doesn’t mean that others “have” to understand, or “have” to deal with the disruption that an episode like this may cause to their own days.

We live in a world that isn’t always kind, especially to those with unique needs and challenges like the ones my son deals with.  People don’t want to be inconvenienced.  They don’t want to be confronted with anything different that might make them uncomfortable.   So when I come across people who are so patient and understanding with my son, I treasure them.  These people are unfortunately a minority themselves, and the last thing I would ever want to do is take them for granted.

I know there are those in the autism community, supporters and autistic folks themselves,  who probably disagree with me.  Kindness and understanding towards autistic people should not be held up as “heroic”.  That presents a picture where autistics are so “difficult” and “horrible to deal with” that to even try must take some kind of Herculean effort. They also shouldn’t be put on display, having their private moments and pain put out for all the world to see so that someone else can be admired for helping and understanding them the way any decent human being should.   I understand that point of view and agree with it wholeheartedly.  That’s not the whole story, though.

Special needs parents fight so hard everyday for broader awareness and acceptance for our children. It’s why I write so much about Footloose. I want people to get to know him, not just his condition.  That condition is part of who he is, though, so I can’t really share stories about him without acknowledging that, and everything that comes with it.  The good and the bad.  Based on where he is on the spectrum right now, he needs more understanding, patience, and help than a typical child.  When someone gives him those things, I want to recognize them for it.  Not only do I believe they deserve it, but I also believe that you can’t ask for special treatment and then not show the proper gratitude for it, regardless of your situation.  It’s a mindset that I plan to pass on to both him and his neurotypical brother.

People don’t have to be kind.  They don’t have to be understanding.  When you find those precious few who choose to be, you’ve got to appreciate them for all they’re worth.  I’m not saying anyone should get down on bended knee to praise their kid’s barber just because he sat down on the floor and cut the child’s hair five strands at a time.  It’s not about groveling and debasing ourselves, or more importantly our children, for some scraps of human decency.

It’s about trying to create a world where examples of understanding and acceptance ARE commonplace.  It’s about recognizing and extolling the type of behavior towards our children that we want EVERYONE to exhibit.  It’s about having a world full of Ms. Connies and Ms. Sherries, because that’s going to make a better world for our kids.

There’s a difference between people who mean well but don’t really get it versus people who just seems to luxuriate in their willful ignorance.  So if someone shares a story about  their experience with autism and don’t think or know to use identity-first language (“my autistic friend” as opposed to “my friend with autism”), or thinks they know more about autism than they really do because they watched one episode of “The Good Doctor”, try to be gentle.  If we want patience, understanding, and acceptance for our children than we have to be willing to extend it ourselves.  If someone’s trying, even clumsily, to reach out, don’t shut them down.  It’s an opportunity to educate and invite them into our kids’ worlds.

Those are the people and opportunities that I’ll always be grateful for.  Almost as grateful as I am to my boy for teaching me about true understanding and acceptance.  All without ever saying a word.

 

 

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