Eyes Averted

After The Boy’s final band concert for the year, I anticipated a meltdown. His TA had asked his friends-who-are-girls to make sure to high-five him before they left, but I knew they wouldn’t. I tried to prepare him for it several days in advance, even getting a promise that he wouldn’t get upset because he knew he would see them the next day. But when he was done, the panic set in, and he wound up, eventually returning to the stage area (where many people remained, clearing the stage), throwing his binder, and then his mouthpiece (a small but heavy hunk of metal).

Everyone around us gasped, and then went about their business in more hushed tones. One kind soul retrieved the now-dented mouthpiece, and I thanked this person without looking at him.

tuba practice

And I realized that I don’t even attempt to make eye contact as any of this goes down. I never do. Am I embarrassed?, I kept asking myself days after the realization. It would be ok if I was, but I generally don’t care what others think of me or my son. I had thought myself way past that stage.

After much soul-searching, I found that it wasn’t embarrassment that made me avert my eyes. No. I just don’t want to deal with everyone else’s reactions. I have enough to deal with, and it isn’t my job to comfort/explain/respond to whatever it is you are feeling upon witnessing my son’s autism in full color. It is my job to relieve his anxieties and calm him.

And if I look into your eyes, I will have to deal with whatever I find there.

I can multitask with the best of them, but not during a meltdown. He is my focus, and everything else is secondary, especially the thoughts of others.

So if you encounter a parent like me who won’t look at you in this situation, they may be embarrassed, or they may just not be ready to deal with you. If you are a parent in a situation like this, you don’t have to worry about anyone but your kiddo. S/he’s the one that needs you most, right then. Even if they are throwing hunks of metal at you.

 

He Melted

Last Sunday, I found a flyer in The Boy’s backpack that said he had a performance this past Thursday, at the orientation for incoming 6th graders. I was a little annoyed at the lack of advance notice, but we rolled with it. I made sure his band shirt was clean, cancelled my Thursday lesson, and made arrangements for transporting his tuba.

Thursday evening came, and I picked The Boy up at Grammy’s. We rode out to his school, and I reminded him that it was ok if he didn’t see all of his friends after the concert (which has been a big source of anxiety and mini-meltdowns in the parking lot after events like this all year). He was anxious about it, but at least we were talking about it. When we got to the school, there were curiously no parking spots, so we parked a ways away, and headed toward the gym. As we got closer, I could hear drums, and I knew we were in trouble. Sure enough, we walked in, and his band was already playing. We waited for the song to be over, and I tried to get him set up behind the band, in the percussion section, quickly so that he could play along with at least the next song. He wasn’t having it, and knocked his binder to the floor. He was angry and feeling left out, and rightfully so. “I missed it! They played without me!” I told him I must have read the flyer wrong, and asked if he wanted to leave.

After the performance, the principal released the 5th grade families to tour the building on their own, and The Boy just lost it. He began walking quickly, shoving people out of his way, giving me the finger, saying he was going to throw his tuba at his band director and cut off his head. I could do nothing but follow and apologize to the people he was shoving out of the way. Apparently, at one point I got too close, because he grabbed me by the neck and shoved me against some bleachers, knocking my glasses off. I picked them up and continued after him. After much walking around the school, and a few hugs from band friends he saw, we headed back to the gym, where he did pick up his tuba and threw it across the gym floor towards his teacher, who was speaking with a woman at the time, and it hit her in the ankles. Again I apologized, and attempted to get The Boy to sit. He did, and the band director approached, hoping to assist me in calming him down. At this point, he revealed that it was, indeed, his fault. That the time had changed and he had announced it in class, but failed to let me know.

The Boy was still agitated, and got up to leave the gym again. But this time, it was for the parking lot. He was calming, and we were heading to the car. I had called The Man at some point for help, and he was on his way, although I’m not sure what kind of help I was looking for. I began to cry. The Boy asked why, and I said, “Because I hate to see you this way.”

We ended up leaving his tuba and music there – let them deal with it for now, and headed home where it took about an hour for The Boy to calm down. By then, he was ready for pizza, and even played my trumpet a bit.

This didn’t have to happen. I’ve told school personnel, including the band director for multiple years that The Boy cannot reiterate to me what is said at school. Apparently saying it ad infinitum is not sufficient. But the band director learned from this. He apologized three times that night (and not once did I say it was “ok”), and called on Friday to express his apology again. I can forgive a young teacher who knows he messed up big time, if it looks like he learned from it. I cannot forgive the principal and assistant principal who initiated the change, made no accommodation for affected students (how many robocalls do I get from the school per week, and this wasn’t on any of them?), and didn’t lift a finger to do a thing on Thursday night. In any school, the buck stops with the principal, and this woman and I are like oil and water. She is not my friend, nor is she a friend to any special needs student. And she quite likely will be the subject of a letter to the Superintendent before the end of the year.

In any case, we are lucky that we do not experience these catastrophic meltdowns on a more frequent basis. The last time something like this happened, The Boy was about 10. The problem is, he is now almost 15 and bigger than me, and can apparently remove me as an obstacle (or at least attempt to). This scared The Man, but not me. It just is.

But it is a helpless feeling, and it is something that requires recovery.

vintage-music-closed-shop

 

Sharing

The Boy is a only child, and as such, doesn’t have much experience with sharing. It’s a common problem for a neurotypical kid, and for one that lacks theory of mind (the ability to understand that others may have different thoughts and emotions of their own), it is even tougher.

This past weekend, The Boy got up earlier than us one day (!) and headed to the living room. He turned on the On Demand feature on our cable and found the Sonic cartoon he was looking for, pressed play, and promptly began recording it within some app on his iPad that records in black and white. This is a new twist on an old interest – making things look like the pre-color era, and has even permeated his drawings, making Sonic look like Steamboat Willy.  Pretty cool, actually.

The problem came a little later when we returned from a family outing, and he promptly sat on the couch and started u the On Demand feature again. The Man’s intention, of course, was to come home and watch a little golf (and therefore I was going to take a nap). Because the living room TV is a shared TV, and The Boy was told he had to work out a schedule with others that want to use it, a meltdown ensued.

young-game-match-kids

Time to pull out the board games and practice turn-taking, too.

What can you do? He just doesn’t have much experience with this? If he really had social skills class (like he’s supposed to), I’m sure this is something they would practice. He used to practice turn-taking when he was a little one in speech therapy. All of this has me wondering, what social instruction is he getting, anyway?

A new friend reminded me of those days, hauling him to speech and occupational therapy even before we had a diagnosis. And the speech therapy fell to the wayside when the school began to provide it. He had an awesome speech pathologist in Elementary who focused primarily on pragmatics, but here, his time with any speech (or social skill) instruction has dwindled to almost nothing. Maybe I need to see what insurance will cover and get The Boy back into a social skills group outside of school again… There’s clearly some skills that need practicing.

The Principal’s Office

principal's officeI was asked into the Principal’s Office yesterday, and it’s amazing how that still makes me feel in my 40s.

I think many special needs parents go through this experience more often than they’d like, and I wonder how often it’s a power play. I’m beginning to think yesterday’s meeting was exactly that.

If you have followed the blog, you know that The Boy goes to a school across the district, although we live much closer now, because we worked hard to get him placed in a pilot program for those with HFA (high-functioning autism).  We were told that the program would likely not only continue at the middle school, but would then be expanded into the high school and elementary schools.  Except that it not only wasn’t expanded, it was discontinued this year. Not only did they yank the program and it’s supports, they yanked the autism teacher out of the school, reduced the teaching assistants in the school, and left the kids hanging.  Oh and any kids who attended the middle school were now re-assigned to their home high school, putting last year’s 8th graders into a brand new-to-them high school where they know virtually no one.  Nice, huh?

And the principal and the vice principal at the middle school retired, too.

Lots of change for The Boy, yet he’s handled it remarkably well.

We’ve had to deal with increased anxiety a bit this year, as will happen with teens on the spectrum from what I hear.  He has always hated friends being absent, and had to also deal with one of his close friend-who-is-a-girl moving away with no notice.

This past Friday was a doozy of a day. They had scheduled an assembly, another one of his friends-who-is-a-girl was absent, and he had a big performance with the band that evening at the high school football game – very excited, but very overwhelmed.  It was not a good day, and the lead up to the performance was very, very difficult.  I have never seen The Boy so paralyzed by anxiety, and it was heartbreaking.

Yesterday, I had to go in early to make a slight adjustment to the IEP regarding length of time, which really only required a signature, but according to the school required an IEP meeting with three teachers and myself, and ridiculous amounts of paper.  I took The Boy in to school. As students started to arrive, he noticed that his friend-who-is-a-girl wasn’t there again, and began to perseverate, become agitated, and look like he was going to bolt.

So when I left his TA to handle it, I went to the office to handle some other paperwork and was promptly summoned into the principal’s office to discuss any “insights” I had into The Boy’s behavior as of late.

I was told he had had four “bad days” this year, which she interpreted as an escalation, and she was wondering what strategies I could offer, as she had limited staff, and basically implied that she couldn’t afford to have her only TA walking the halls the whole day with my child, as happened on Friday. And the TA was just about the only person who could “get through to him”.

Come to find out, she was counting the morning’s troubles as a bad day (not in my book, as he was already in science class by the time I had walked into her office), and another of the “four days” involved her TA being late to her bus route at the end of the day, because The Boy insisted on giving one of his friends-who-is-a-girl a high five before he got on the bus.  Problematic to be sure, but again, not a “bad day” in my book.

That left us with Friday. “And Thursday was a bad day, too,” she said.  “I hadn’t heard anything about Thursday,” I replied.  “Well, it wasn’t as bad as Friday, but it wasn’t a good day.”

As happens so often, I could only formulate what I should have said after the fact. I explained his increased anxiety as of late, and offered that a lack of communication about these incidents and disruptions to his day (like Friday’s assembly) were obstacles to The Boy’s success. I explained that the anxiety was new to us at home, as well, and that I didn’t have any magic answers. And that was about it.

I should have said that her lack of TAs was not my problem. She needs to take that up with her central office. I should have said that four bad days since August meant that The Boy was doing pretty well considering all the change the district had foisted upon him.  I should have said that if his current TA is the only one who can get trough to him, then she needed to come up with a plan to address that, as it is her school, her educational facility, and her staff. I should have said that it was the district’s policy to employ TAs as bus drivers that was the problem on the one day, not anything that had to do with me. I should have said that kids with autism will have bad days, and that if she or his teachers couldn’t handle that, then they need more training. I should have said that she needed to be approaching the district autism specialist for strategies, rather than the parent who is not at school on a daily basis.

Needless to say, the meeting left me with a bad taste in my mouth. I’m thinking of writing a follow up email with my list of things I should have said. I’m not sure if it’s worth my time, as it seems she is ignorant of what her role is, and of what appropriate expectations of an 8th grader on the spectrum are.

I am beginning to become resigned to the fact that dealing with the school will be a continuous struggle for the next five years, and that gives me even more impetus to find meaningful opportunities for The Boy outside of the school day, and possibly start our own business to afford him a pleasant working experience. I’m just sorry to see the rampant ignorance that still exists, even within the walls of one of the best schools in the district, and even at the highest level.  What more do we have to do??

Words Matter: Autism Awareness Day

Today is Autism Awareness Day.  It is a day to celebrate everyone touched by autism, and to increase awareness about autism.  Not “of autism,” but “about autism.”  Increasingly I have seen and heard people in our community dismiss “awareness” in favor of “acceptance”.  I don’t think anyone can argue against acceptance.  But I don’t entirely understand the dismissal of awareness altogether.

If everyone was “aware” of autism, my child’s band director may have been more open to his needs, and may not have decided that he needed to switch instruments or quit band.  If my son’s first social studies teacher of the year was “aware” of autism, she may not have decided on the second day of class that he needed to be in the special ed room instead of her class.  Even I continue to become “aware” of better ways to handle certain situations and behaviors in relation to my son’s autism.  So I don’t think we’re “done” with “awareness,” or that we are ready to “forget” it in favor of acceptance.

I think sometimes we get so wrapped up in our own little community bubble that we think everyone is “aware” but it just isn’t true.  Yes, acceptance is our ultimate goal, but we cannot get there without first helping others to understand the many facets of autism, through awareness campaigns.

People in our community are also upset, saying “Autism doesn’t only ‘happen’ in April,” which is silly.  Do any other communities of those with medical conditions get upset that they have a nationally recognized month which brings awareness to their fundraising efforts?  No one thinks it only happens for a month, but in all reality, it slips out of people’s consciousness after the month is over unless they are touched by autism somehow, and until they experience autism first-hand at a restaurant,  mall or other public venue, or at a get-together in the neighborhood or dinner at a friend’s house.  And then, because of Autism Awareness month, they may remember that what they are seeing may not be a tantrum from a spoiled child, or the bizarre actions of some weird kid.  “Oh yeah, he may have autism,” they may think, and react with compassion instead of condemnation.

Awareness. Acceptance. Awareness Day. Awareness Month.  Words do matter, and another word that is tossed around and shouldn’t be is “epidemic,” which signifies that autism is a disease, which it is not.  The new numbers released by the CDC are interesting, but not worthy of hysteria.  It simply puts an exclamation point on the need for more research, and more services for those with autism of all ages.

So happy Autism Awareness Day and Month.  I hope we reach billions this year, and begin to change hearts and minds which may have been sheltered in ignorance before.  I hope we can work together as a community to see this opportunity for what it is – something still very necessary to reaching our goal of acceptance for those with autism.

Happy teaching.

Some Autism Lessons in ‘Frozen’

A picture of a Snow Crystal taken by Wilson Be...

Yesterday, I took The Boy and one of his buddies to see the latest Disney movie, “Frozen.”  (***SPOILER ALERT: If you haven’t seen it yet, this post does contain spoilers, so come back and read after you’ve seen it***)  While I watched, and endured the entire row of middle school girls who decided to sit behind us (*gag*), I realized Elsa was going through very similar experiences to many kids on the spectrum.

  • She wanted to be around people, and to be close to her sister, but knew they wouldn’t understand, and didn’t want to hurt anyone.
  • When she finally allowed her emotion to show, there were some people who actually were hurt (more than once), because she couldn’t control it.
  • When she was able to get away from the castle (and other people), she was able to see how beautifully her powers could transform her surroundings.
  • Through her sister’s love, she was able to realize how to use her powers for good.

And I thought what a great message this movie had, and how powerful for our kids on the spectrum to see it, and possibly identify with the “bad girl” who wasn’t really bad, just misunderstood.  Evolved fairy tales are my favorite.  Girls who save boys, people who solve problems using minds not weapons, and the replacement of an “evil ice queen” with a young misunderstood girl with special powers both dangerous and beautiful.  Yep, this is the kind of fairy tale I want The Boy to experience.