Community?

I was made fun of on one of my favorite autism FaceBook pages last night. By a commenter, and the page owner, an autism mom herself. All for stating I didn’t support a man who made fun of the disabled.

When you normalize a man who belittles and berates anyone who disagrees with him, I guess this behavior is to be expected.

What’s sad is that the autism community has not rallied together in defense of the strides we’ve made in healthcare and education. It seems we are even more divided than before, to the point that I’m not sure a community still exists.

I try to remain hopeful for the future. I try to tell myself that this too shall pass.

The question is, what will remain when it does?

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Power, Peers, and a Sad Evening

The Boy’s first concert of the “sit-down” band season was last night. We bought a tux, and traveled two hours last weekend to get a tux shirt, cummerbund, and bow tie combo. We were looking forward to this.

After the first song, The Boy pushed his chair back, put his tuba on the floor, and exited the stage. I sat in the audience with my family, my heart pounding, just knowing a meltdown would ensue any moment. But it didn’t.

The band director seemed to check on him between songs, but The Boy didn’t return to the stage. After the concert was over, I asked The Boy what happened, and he said, “They didn’t like my playing.” He was sad, not angry. I was confused.

Back in the band room, while waiting for The Boy to say goodbye to all of his little friends-who-are-girls, my friend and her sons who are both in the band were there, and I spoke to her. One of her sons spoke up and told me that the other kids in The Boy’s section had taken his mouthpiece away so he couldn’t play.

I’m sure I turned about six shades of purple.

I let the timer run down for how long The Boy could find friends, and then I told him we needed to find the band director. When I found him, he was standing right next to that skunk of a middle school band director. I explained what had happened, and he seemed mildly surprised and said he would “talk to the kids” about it. I reminded him that it could have ended very differently, with a screaming-and-throwing-things meltdown in the middle of his concert. He repeated that he would talk to them.

The Boy and I went to the convenience store to get him his promised ice cream, and we talked. I told him how very proud I was of how he handled the situation, and that those kids had no right to do that to him. I let him know that I was angry, and he expressed disappointment that he only got to play one song. I told him he had every right to feel that way, and that what they did to him was very wrong.

On the way home, I decided to go up the ladder without waiting for a response from the band director. Based on his less than promising response, and suddenly remembering the two week time period where The Boy had no concert music because his section leader had failed to give it to him. Repeated targeted negative behavior directed at one student is the definition of bullying, and that’s what we have here, folks.

I knew going in that the culture of this student group wasn’t all that inclusive. But for those students to take away my son’t ability to participate as if it were their choice to do so is pretty telling that there is something deeply wrong here. I’ve written an email addressed to the band director, the special ed teacher, and the principal highlighting my concerns, and requesting a meeting. Whatever this is ends now, and they have got to start teaching neurotypical peers how to deal with autistic kids in their midst. They are targets that are just to easy, and it’s time the adults in the building did something proactive to protect them.

Peer to Peer: How to Make Sure Pranks on Kids with Autism Don’t Happen

There are too many stories of horrific acts done to kids on the spectrum these days.  The ice bucket challenge “prank” in Ohio, the boy in Pittsburgh duct-taped to a soccer goal… Targeted hate crimes if you ask me.  I’m appalled that schools and law enforcement seem to be utterly reactive in these situations, as well.  Taking plenty of time to “investigate” while handing down weak “discipline”.  It is so utterly disheartening to read about these attacks.

What I know is that the chances of that type of thing happening in the district where The Boy went to school from kindergarten through 5th grade were  and are slim to none.  Why?  Because they were proactive.  When they created an autism program, they also created a program for the neurotypical students that would be encountering this population in their classrooms.

In The Boy’s case, it started as “Grub Club” where the kids in the ASD program were able to go out into the community for lunch once a month and invite an NT student/friend.  The kids in the spectrum get real practice using social skills, and the NT kids get to know the ASD kids as real people, away from the peer pressure.

Grub Club morphed into the LINKS program (more info here), and by the time The Boy was in 5th grade, almost the entire 5th grade class had signed up to be a LINK.  They received special “training” and volunteered to buddy up with their ASD friends in class on projects.  When I watched The Boy and his classmates, they never hesitated to help him find where to go at the choir concert, and never refused a birthday party invitation.

friends

You can’t expect neurotypical kids to know how to deal with kids on the spectrum.  You can hope their families have given them some good training on how to treat other human beings, but sadly, this is not even the case the majority of the time.  If you are going to teach my kid with autism how to react to the neurotypical world, you had better also be teaching those NT kids how to deal with my kid with autism.  When you don’t, you are missing teaching lessons as important as anything in the Common Core.  And maybe your district will be the next one on the national news, dealing with some horrific act perpetrated by your students who were never taught these important life lessons.

Boys in the Bathroom

The Boy has had his first encounter with bullying at school.  I should say teasing, because bullying is really defined as a repetitive, targeted behavior, and I have no evidence that this has been going on for any length of time.  Truth be told, I was very happy with the way the school personnel handled it, and took some responsibility, as well, because we kind of knew this particular instance might happen.

Let me explain.

When we first moved south, The Man noticed that anytime The Boy went into a public bathroom, he had a tendency to “drop trou” to go pee, meaning he would drop his pants in order to do his business.  Apparently, this is not typical male behavior in a restroom – I would not know that, having never been a part of this particularly male experience.  When The Man told me about it, and explained that he just couldn’t do that, I didn’t have an answer as to how to fix it — this is not something that I am equipped to teach him.  And having hit puberty, The Boy was certainly not going to let me anywhere near him while he was anywhere near peeing.  This was clearly a dad’s job, and you can understand why a step-dad may be less than comfortable with the responsibility.  We ended up urging The Boy to use a stall when possible.

Fast forward to the second week of school, when I got an email from The Boy’s program teacher explaining that The Boy had been teased about doing just this, and talking to others while peeing, as well.  Another group of boys reported the teasing directly to one of his team teachers, for which I am grateful and appreciative, and that teacher actually had another teacher cover his class that same day so that he could take the offenders to the teachers lounge and “read them the riot act” over the incident. “We just don’t tolerate that here,” he explained via email.

I called The Man and we decided The Boy needed a lesson in how to pee in a public bathroom, and that The Man would be the one to do it.  He didn’t balk, he didn’t hem or haw.  That evening, he said, as calm as ever, “Hey, I need to show you how to pee,” and The Boy said, “Alright.”

The Man and I exchanged a look, complete with two pairs of raised eyebrows…

The Man pretended our living room wall had two urinals on it, which The Boy liked, with his toilet obsession and all. The Man then proceeded to break the process into steps. “You put your thumbs here in your waistband, and pull down,” and they practiced as they faced the imaginary urinals on the wall. He explained the whole process, and explained that the reason boys do it that way is so that they don’t show their butt to everyone else, so it can be more private.  The Boy paid attention, and seemed to understand.

The Man and I were relieved that The Boy seemed so willing to take instruction, and we can only hope he is using his new-found knowledge.

In any case, I was proud of them both.  Sometimes a man’s gotta do what a man’s gotta do.

The St. Patrick’s Day “hat”…

My son remembers just about everything.

St. Pat's Day "Hat"A couple of years ago, he made Fabulous Babysitter buy him a St. Pat’s-themed head band with orange pigtails that got some pretty strange looks when he wore it.  He was oblivious, of course, but the rest of us weren’t.  This is one of the tough parts of being an autism parent (or caregiver, or teacher).  We don’t want to deny them anything that makes them happy (at least nothing as benign as this), but we also don’t want them to be targets for the less compassionate public at large.

A few years ago, it was a beanie (complete with propeller!) that The Boy had found around Halloween at a costume store.  Harmless, right?  Until I got the note home from his teacher that he was being teased, and could we please keep it at home…

And part of me screamed, “No!  Let’s concentrate on the teasers and not the one being teased!” while the other part said, “Oh, for sure.  I so get it.”

Fabulous Babysitter took The Boy out on Fun Friday, and he wanted to get some St. Patrick’s day “stuff”, and he dragged her from place to place (although she would never call it that), until he remembered the exact store they had purchased the pigtail-headband the last time.  And they purchased it again.  And again, we ask ourselves –  is it better to let him be himself, or help him to assimilate?

A Look Back at October

Can you believe it’s November?  Here are some of the top posts from October you may have missed: One of the Toughest Things The irony of autism is its unpredictability, when the person with autism craves predictability… Birthdays Past and … Continue reading