April, Autism, Awareness, and Acceptance

Unfortunately, the autism community is polarized (and therefore paralyzed) on many issues. It’s fairly divisive (go figure in these days and times!), and people have widely differing views on everything from person-first language to vaccines. We can’t even agree on what to do with our little month of April. For most, “awareness” of autism doesn’t cut it, and we should be seeking “acceptance” of our kiddos and their behaviors, needs, and neurology from the general populace. Some (myself included) feel like awareness is a necessary first step that leads to acceptance, but others are not content to be patient with the rest of the world.

I get it.

But if we as a community continue to argue about every issue that exists, the result could be worse than a lack of awareness. If the message is muddled or unclear, no one hears it.

We need to agree to disagree on the issues that divide us. Table them until we can tackle each in its own time. Focus on one thing that will do the most good for those on the spectrum.

In my humble opinion, this one thing would be autism awareness and competence of our nation’s educators.

It is unfathomable to me that teachers across the country are still unaware of the core deficits of autism. They are as of yet unaware that an IEP is a federal document, and a binding agreement to which they are held accountable. They do not know how to make simple modifications and accommodations for a growing segment of their student population. And of course I do not mean all, or even most teachers in this country. But our special ed teachers need help, folks. If our kiddos have a right to the least restrictive environment, we want them in general ed classrooms with teachers who have a clue. Because let’s face it – our kids are at school each day much longer than they are at home. And if they are met with adults who see them as a “problem” or ” more work” or are just clueless in general about how they work, how devastating is that to this entire generation?

If the community could just get behind one urgent issue, this would get my vote, and I don’t think we’re very divided on this one.

This would be my wish for April and the autism community at large.

Dear Autism Community

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Dances, Dodgeball, and Decisions

The Boy is in 8th grade and has never been interested in any of the school dances – go figure. This past week, however, his school band had a Friday night “Bandathon” fundraiser, which was followed by dinner (pizza) and a dance.  Several weeks ago, I asked The Boy if he might be interested in staying for the dance…

“I’ll think about it,” he said.

In Boy-speak, this usually means no, kind of like when your mom said, “We’ll see,” back in the day.

When I brought it up again, I offered to chaperone if he wanted me to, and at that point he said, “I think I’d like to do that.”

!!!

I had no idea what type of dance this would be, so I thought I had better cover my bases, and ended up showing him how to slow dance with a girl in middle school, just in case the opportunity arose and he might want to ask one of his friends-who-are-girls to dance.

After the performance, and the pizza was inhaled, the band director spent the first hour of the “dance” reading off ticket numbers for prizes that had been donated for a raffle. He then turned on his computer, and played three or four songs over the speakers (a la “Cupid Shuffle”), started a game of dodgeball (??), and returned to calling off ticket numbers. That was the “dance”.

Dodgeball?

The important part was that The Boy had fun.  When the kids danced, he made some herky-jerky movements near them.  When they played dodgeball, he went out on the “court” and wandered around, throwing a ball when it was handed to him.  He got to show some of his hand-drawn pictures to his friends-who-are-girls, and play his DS a bit.  He was a happy camper, and that’s all that matters.

To Know Him is to Love Him

Halloween is right around the corner, and The Boy, true to form, decided last year that he would be Sully from Monsters Inc. this year.  Once he knows what he wants, he doesn’t waver, and even though The Man and I tried to convince him that he would be a really good Dracula, he was certain he wanted to be Sully.

So Sully it is.  But I can not and will not buy an expensive costume. We will be making it as we have done for the past few years.  And since I am making it, I can steer The Boy toward a more age appropriate costume, even if the subject isn’t very. Thanks to Pinterest, I have found a hoodie-based rendition that The Boy said sounded like a good idea. And now the hunt for cheap supplies begins…

Our kick-butt Sonic shoe from last year's costume

Our kick-butt Sonic shoe from last year’s costume

The Man and I may have tried to steer him to something more age appropriate, but in the end, it’s The Boy’s Halloween, and Halloween is for kids, not for us adults to feel better about ourselves and our children.  The choices they make show their passions and creativity, and if we start to make those decisions for them, the light in their eyes gets a little duller.

Yesterday, The Boy came home from school with a cat poster he had purchased from the book fair.  I knew it was coming home, and no, it isn’t the typical purchase from a 13 year-old eighth grade boy, but it made him happy.  So much so that he taped it to the wall in his room as soon as he put his stuff down.  I will never get in the way of him expressing his passion for the things he likes, because that’s a part of him (except for toilets… we have to limit the passion for toilets…). If I start denying that, I’m denying a part of him and it just isn’t right. To know him is to love him, and anyone who does will accept him Sully costume, cat poster and all. Anyone who doesn’t just doesn’t matter.

Acceptance

Sometimes, I look back on my time being a single mom rather fondly.  Doing it on my own was something I needed at the time.  In many ways it was very liberating, and I bonded with The Boy in a way I never could have as a married parent.  And then I remember how lonely it was, as well, when I thought it would always be just the two of us.  When there was no one looking out for me besides myself, money was tight, and I had to fill every adult role. Being ill was completely out of the question because there was no one to take care of either of us.

And then I remember even further back when I was married the first time, and one of my friends tells a story about a time soon after The Boy was born when I was so ill that I called her to take me to the hospital.  She tells the story because I have absolutely no memory of it (funny how the brain works). Yes, I was married at the time, and when my friend tells the story, she says that when she arrived to pick me up, she watched the ex step over me, lying prone on the floor, on his way out to his grown-man basketball league.  I guess I was dehydrated, for which I have gone to the emergency room a couple of times in my life, and apparently he had no inclination to take me to the hospital himself, regardless of the fact that I was very visibly ill, and we had an infant at home.

Some single moms get very vocal and agitated when married moms say they feel like single moms.  I’ve been in both positions and try not to judge.  Life as a single mom can be very, very difficult, and life as a married mom can be very, very difficult, as well.  Both positions can also be incredibly rewarding and satisfying.  And unless you are living someone’s life 24 hours a day, you really have no idea of another person’s challenges.

I find the same type of vocalizing and agitation in the autism community on various topics, and judgement all around. Words like “aspie” and “high functioning” can cause full-throated arguments, as can person-first language, vaccines, Autism Speaks, and even the varying parts of the spectrum and who has it “harder”.

I don’t often swear in my writing, but I call bullshit.

EarthEveryone, EVERYONE on this planet has their own struggles, some more visible than others.  Everyone also has their own opinions.  And there is very little in this world that is truly black and white, right and wrong.  Our diversity and duality make us human, and dare I say, interesting.  We don’t have to agree to like each other, learn from each other, or coexist.  We don’t have to compete for whose life is the hardest – there is no trophy.  But I have learned that experience is the best teacher, and if we can be civil to each other long enough to listen to one anothers’ experiences, there is a lot to learn about our kiddos, ourselves, and these interesting people with whom we share this space on Earth.

How Do You Know?

I saw a tshirt advertised on facebook the other day that read in big block letters, “I AM A MOM OF A CHILD WITH AUTISM,” and I thought, “Hm.  Don’t need that!” And then I thought about how quickly I assumed others know that about me, about us, about The Boy.

The Boy doesn’t flap much, doesn’t stim much when we’re out and about.  He saves it primarily for when he takes long walks outside, back and forth either in front of our house, or in front of Grammy’s.  Sometimes, he does it in his room, or from the kitchen to his room.  His stimming looks like an uncoordinated gallop with a sound like a voice-cracking “giggle” that could attract some stares from the un-initiated.  But I can’t recall seeing him do this at the grocery store or at a restaurant, where others may have cause to stare.

I’ll tell you when they do know.  They know about 2 seconds after they ask him a direct question.  They know when he bumps into them and keeps right on walking.  They know when he walks directly between two people that are together.

Every once in awhile, we come across some old, uppity lady who takes affront, but in general people don’t do much more than notice and go about their own lives.  So no, I don’t need a T-shirt.  Whatever people may assume, or learn after a brief encounter with us – it doesn’t much matter to me. As long as they are tolerant and kind, the rest doesn’t matter.  The tolerance and kindness will not be created by a T-shirt, but through hard work, writing, speaking, spreading the word, creating as many programs for NT kids about acceptance as there are for spectrum kids about how to fit in, volunteering, and sharing, sharing, sharing… That begins with us. Ready?

Middle of the Night

Every once in awhile, I come across some book or movie, something that speaks to me in a profound way, and I just have to share it.

The Man and I love to watch old movies.  Turner Classic Movies is our fall back, and we check to see what’s on every night of the week.  The Man often falls asleep to it, and sometimes wakes up to it.  Last night, as so often happens, he fell asleep, and I realized I was awake and started watching “Middle of the Night” from 1959 with Fredric March and Kim Novak.

You’ve probably never heard of it, but the script was by the same person who wrote “Marty,” which you probably have heard of if you know anything about old movies.  I’ve seen “Marty” and liked it – gritty and realistic about what it’s like to be lonely with little chance of finding love.  “Middle of the Night” is even better, and it’s unfortunate that it isn’t as well known.

Why am I writing about this old movie no one’s ever heard of?  Because it still has relevance, and I empathized with its characters, as some of you might, as well.

Middle_of_the_Night_(1959)_trailer_1Fredric March plays a 50-something business man, which was considered teetering on old age back then, while Kim Novak plays his 24 year-old secretary with whom he falls in love.  I won’t give the whole plot away, but suffice it to say that even in 1959, their families didn’t take too kindly to the age disparity in their relationships.  And in their own way, their friends and family began to tear away at what they had with their well-intentioned interference.  Saying how much they cared for them, not wanting them to make a mistake they would regret, cautioning them against being impetuous, they needled and cajoled and turned something positive into something negative until the couple was bickering and on the verge of breaking up.

Luckily, my own friends and family were largely supportive of The Man and I.  But there were some who were (and are) not.  And it hurts to have people who love you not be happy for you, out of misplaced “concern” for you.  And ultimately, they either accept your relationship, or you have to move on, and if not sever your relationship with them, at least keep them at a distance.  Because that kind of negativity will tear anyone down, and no one needs that.

In any case, this is an old movie that still resonates today, and I highly recommend it.  It’s amazing how little people change.