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Autism: Progress and Betrayal

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I know, I KNOW. Remember when she used to blog? When she had funny things to say?

 

How banal to say I’ve been busy. Which I have, don’t get me wrong. But I’ve also been…contemplative. Wondering if I should continue to write about autism now that Connor is getting older. Thinking maybe I should start a different blog, one with a more general topic and scope, so I could write about ridiculous things like middle-age and meeting Hillary Clinton on her book tour.

 

I still don’t know. I feel icky in the in-between space; unsettled, restless. But until I know for certain what I want to do, IF I want to do anything at all, if there is something I want to put down, then I will put it here.

 

This summer, I’m cautiously optimistic to report, has gone so well. We’re light years from where we were 3 or 4 years ago. Those we summers filled with dread and endless, debilitating worry. I didn’t like to write about those summers because I didn’t want to revisit how painful those times were, how scary. “Will it always be like this?” I asked myself daily. But Connor has grown and matured, albeit not to the extent of his peers. But there is progress and more understanding of what behaviors are unacceptable and the ability to try and control his impulses.

 

The reason it’s almost just as hard to write about how well things have gone this summer is because I know it’s not like that for every body. I remember how I would wince when I read about how great someone’s child was doing, or how much fun they were having. Not because I begrudged them that experience, but because I longed for Connor to have some of that inner peace that would allow him to enjoy himself more and build happier memories.  So I know that it’s hard to hear or read sometimes, wishing things were easier in your own world and hoping there were smoother days ahead.

 

So it’s okay if this is too hard for you to read. I understand and won’t feel badly if you click away now, to find momentary solace in something funny.

 

This summer has been a continuation of last summer. Days split between ESY and summer (day) camp. It’s been a critical factor in our success because it breaks up the day into halves, avoiding the common issue of Connor getting bored and restless when he spends too much time in one place. It’s also important because he continues his educational skills throughout the summer, minimizing the shock of being back in a classroom after 11 weeks off.

 

He did awesome at ESY. We had positive, happy notes every single day. Notes talking about how well he participated, how much fun he was having, how much of a pleasure it was to have him in class. And I can tell you that those notes are a monumental change and shock to the system after spending years receiving negative feedback on a constant basis. Those notes were healing in a way you can’t imagine. Every note about every problem, every mistake, every stumble just chipped away at the confidence I have for my child, and I resent the hell out of that. “Tell me something good about my child! Tell me there is value in him, that he is worth teaching and knowing!” Why do we have to ask for that? Why do I need strangers to confirm for me that my son is a beautiful, smart, creative soul? I don’t, no more than I need those people to tear away pieces of him, as though they were stripping leaves from a tree.

 

And camp has sailed by with no more than a small blip, here and there. Days where I didn’t cry as I drove to camp to pick up Connor. Days where I didn’t fear for my job because I was taking yet more time off to deal with issues at camp. There were smooth days, happy days. And we spent the summer getting ice cream and watching fireworks and ordering pizza and staying up just a bit too late. And we planned occasional “family fun nights” where my husband and I were both out-bowled by that boy. I have no shame in my score of 54, so you can just put that out of your mind. I earned that 54. And Connor…well, he earned that 108. But let’s be fair here and keep in mind that the gutter guards were up for his turns. That’s all I’m saying. You know, if I had gutter guards…

 

And he was so freaking happy after each of his turns, because he was beating his parental units.

 

I swear, this is a happy jump.

I swear, this is a happy jump.

 

But then, right at the end of ESY something did happen that derailed all those peaceful feelings. One day, the bus driver walked Connor to the door and told my mom that he’d had very bad behavior on the bus. She didn’t elaborate, so the next morning when I waited with him I asked her for more details. She got off the bus and asked me if he was on only child, which he is. She said he was the only child on the bus without siblings. Yeah, and? I guess she was trying to say he’s spoiled, which is funny (not haha) because we have spent so much time working with behaviors that I didn’t get to spoil him nearly as much as I would have liked. She went on to say that the afternoon before he was playing with his seatbelt and sharing his toy with another  child on the bus.

 

“My spoiled only child was sharing a toy? Well that sounds like a commendable character flaw to me!”

 

Well, it seems that “kids with autism have problems with sharing and they don’t always like to give things back.” I simply cannot tell you how relieved I was to get some needed insight about autism from someone who had spent many, many hours driving them places and really knew a lot about what it’s like to be an autistic child. So I asked if there was an aide on the bus, and she said there was. And at that very moment, the aide stood up and came to the door of the bus to tell us that “he just said to me to tell you all to stop talking so we could hurry up and go.” And by the way she said it, she was absolutely not amused and, it seemed, was rather disgusted by what he said. So I laughed. I laughed and I said that what he said was a very typical aspie thing to say. He wasn’t being rude, he was being matter-of-fact about the reality that they were going to be late. “Kids with autism often get anxious when things go off schedule.” Put that in your holier-than-thou pipe and smoke it, sister.

 

Anyhoo, I called the bus company and asked them to pull the tape from that afternoon so I could see it. But not before I came down hard on Connor about safety on the bus and following directions. For his own good, because safety is important and so is listening to adults. That’s what I told him.

 

The weekend passed and on Monday the manager of the bus company called. He’d pulled the tape from that afternoon and watched it, and he was calling to apologize to me. I was confused. He told me he’s seen absolutely nothing on the video that he would consider a safety concern or a behavior problem. He said he has three children, and he knows how kids can be, but there was nothing that Connor did wrong. He said a few times he seemed “antsy”, which is pretty common considering the ADHD. But no behaviors. I stammered as I asked him why the bus driver would have been so upset, so adamant that he was a problem on the bus. It didn’t make any sense to me. It didn’t make sense to him either, but he assured me several times that he would be addressing this with both the driver and the aide and that it would never happen again.

 

But the fact that it happened at all…why? Why would someone lie or exaggerate about a little boy that already has enough challenges to contend with every day? The confusion began melting away in the heat of the burning, seething pool of red-hot anger that was boiling in my gut.

 

Every single mother in the world will tell you this one very basic premise about her offspring: Don’t fuck with my kid.

 

But there was nothing I could do, because confronting her on the final morning of ESY would only bolster whatever flimsy excuse she would try to create. So that morning I drove him to ESY myself, leaving before the bus arrived. I’m sure she wondered where Connor was that day, but then it all clicked into place later when her boss called her in to talk about what she’d done.

 

I hate that he is old enough to be able to remember this someday when he’s grown. It’s not a pleasant memory, knowing that someone you’re supposed to be able to trust lied about you. No matter how much I apologized, it can’t erase what happened. My trust is broken now too, so I will never again take someone’s word over my child. Not without ample evidence.

 

But I haven’t let that cast a shadow over the wonderful progress he’s made and the great reports from ESY and camp. We are so far beyond where we were when he was 5. Communication has been the biggest factor in his progress and success because he can express himself and make his needs known. All the damn time, as a matter of fact. Right this second he needs my computer so he can play Minecraft.

 

I hope you all are having a relaxing summer and enjoying some qualify family time. It goes by so fast, don’t let is pass you by. Never stop believing that there will be progress and growth.

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

6 responses »

  1. Thank you for posting about Connor’s successes this summer! You are right, many of us are not there yet, we are still in your 3-4 summers ago phase. Which is why we need to hear about how well things are going for you! It reminds us that this is probably temporary, that our child will grow and mature.

    And don’t kick yourself too hard about the bus thing. You know now to follow-up next time before you talk to Connor. It is a great lesson. Ask him what he thinks about it. :-) Hugs!

    Reply
  2. I absolutely love you and Connor. In so many ways he reminds me if my boy. It has killed me to work these past few summer’s when I feel I should have been here to aid in his growth. We have had some regression since last spring, chalk it up to hormonal influences on the Aspie brain, rapid growth spruts and the stress of impending middle school this fall, it has been a rocky summer for the kiddo. That said I have the next few weeks off before heading back to school and we’ll see how things go with some Aidan and Mom time. Good for you for sticking to your guns about the bus driver and aide. My personal stance has become, I don’t care what you think my kid has done, you don’t know him or anything about him; I am my kid’s expert not you. And, I stand by my guns on this!
    Cheers to you and yours Flannery :-)

    Reply
  3. Aaryk Noctivagus

    “Wondering if I should continue to write about autism now that Connor is getting older.”

    Autism does not end with childhood. Autism is a life long condition… as I know you know full well. I would suggest writing about your journey as long as you have something to write and the will to do so. So many people imagine Autism is a childhood condition that somehow vanishes when Adult. So very little is written by parents of adult Autistics or Aspies. Parents never stop being parents. Aspies never stop being Aspies. Autistics never stop being Autistic.

    Adult Autistic and parent of two Autistics talking :)

    As for the nasty bus driver… it happens. I do not understand why, but some people are just unpleasant… I guess they have a bad attitude towards children and like making bad reports to parents because by doing so they are preying on the vulnerability of the children… perhaps they like the power of being able to do so, and they just don’t like children. I don’t know, but I have encountered a few. Especially a teach I had when I was 6 years old who apparently disliked little boys – telling many of the parents of boys in her class that they were the worst behaved boys she had ever had in her class… even though my parents discovered what she was doing, they still told me off and said how ashamed they were of me. And with my two, we also had a really lousy school bus driver – a really nasty piece of work… but we sorted him out a few times and, in the end, his contract was not renewed.

    Connor still has most of his life ahead of him :)

    Best wishes and thanks to you…

    N.

    Reply
  4. So glad his summer went well. You should never feel you should not write about his accomplishments, ever. Yes, it might make some readers feel bad, but I can guarantee that there are/will be more readers that find it is just what they need – some hope! As for the bus driver, I really don’t understand what the issue was, I read it twice. Was she complaining about the seatbelt or sharing? I suppose it doesn’t matter, both complaints seem to be ridiculous. I am sorry that he realizes what was going on.

    Reply
  5. you need to continue writing about connor as there will be many more issues that will need addressing they will just be different. schooling, relationships, independance, employment, even possibly his own children.

    Reply
  6. Pingback: The Handsome Compensation Scale, According to Me | Living on the Spectrum: The Connor Chronicles

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