3 Guest Limit

Thursday, The Boy has his 8th Grade Celebration. When I first heard about it, I only heard the name and the date, not a description. I thought it was an end of the year dance for 8th graders, as is quite common.

It’s not.

It’s an awards/graduation ceremony, and at first I thought about us not going. The kids have to sit on the stage the entire time, and my experience with awards nights was that they drag on interminably. Not very autism-friendly. Plus, they are dictated to wear “Sunday clothes” (I hate that term), which for boys means a nice pair of pants and a collared shirt. Not The Boy’s preferred clothing, either.

But I consulted with his TA, and she seemed to think he would be fine, and that it shouldn’t last longer than an hour and a half. So, I sent in the RSVP that we would attend. Here’s the thing: they give the kids tickets, and each kid is limited to three.

I completely understand that there are families who will bring the entire extended family (and usually air horns) to an event like this, and there is limited space. I get that. But three?

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What if a kid has parents who are divorced and remarried? Who gets to go?

What if a family has 3 children or more? Who gets to go (or pays for a babysitter)?

What if a family has 2 parents and 2 grandparents that attend their only grandchild’s events like ours?

The stepdad bows out and gives up his seat so both grandparents can go, that’s what happens. And even though I know it’s doesn’t bother The Man too much, it still kinda stings. And rather than being a celebration, it becomes a compromise, which kinda ruins the whole thing. Shame on the school that can’t accommodate families when all they want to do is celebrate their child. Together.

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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.

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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.

 

Summer Day Camp

If you follow this page on FaceBook, you probably saw on Monday that we got the notification that The Boy was accepted and placed in the Autism Society’s new Summer Day Camp in our area. I was on pins and needles all day waiting for the notification because there were only 30 spots, and I just knew they would be overwhelmed with applicants. They didn’t seem overly worried, but I was up at midnight when registration went live, just in case. Good thing too, as they ended up taking kids that qualified in order of the date and time of registration!

In any case, it is completely grant funded (in other words FREE), and runs for six weeks, every damn weekday, from 9am to 5pm. Down here in the land of “ESY?? We don’t got no stinkin’ ESY!” this is a golden opportunity. Trained staff, fun activities, 1:1 and 2:1 ratios…

And vans. Six of ’em. To take the kids places.

You see, even though I have the perspective to be able to see how awesome this will be, The Boy still sees it as a change from summers past. Camp Smile, while it was the best we could hope for for the past three summers, wasn’t all that. And he hated it at first because it was so different from the awesome ESY program he had up north. But he grew to love it. And now, another change. So I had to sell it a bit when I told him yesterday. And I opened with the vans.

“What kind of vans are they?” he asked. He was hooked.

Do I know my kid, or what? 😉

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Wrapping it Up

The Boy has nine and a half more days of school, and where we live, that equates to end-of-grade testing. He has three tests this week, and one next week that attempt to assess everything he learned in the entire school year in all four of his core subjects. I’m pretty sure the educational community determined decades ago that these tests are a poor way to assess any kid’s knowledge, and I can tell you right now, they are a huge waste of time for my kid.

I don’t think he’s passed one since we moved here. Does that mean he hasn’t learned anything in any of his classes? Nope. But they still require them to take them (although, thanks to his IEP, he doesn’t have to pass them to move on to the next grade!).

Testing is hard for my kiddo, anyway. He needs extended time and breaks. All of that means that these tests take him ALL DAY LONG. And he hates them. Wouldn’t you?

This year, for the first time, I’ve heard him self-advocating, complaining about the length of these tests. And unfortunately, there’s nothing I can do about them. But I have offered him a treat after school every day that he has one, as an incentive to “do your best, that’s all you can do!”

Here’s to the teachers and kiddos struggling to slog through the crap at the end of the year so some bureaucrat somewhere can check his box that it was completed. It’s not one of life’s prettier lessons, but it is a life lesson – sometimes you just have to do it, even though it’s stupid. And it’s one we all have to learn, sooner or later.

Good luck!

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Acceptance Begins with Our Own

I have a friend with a young daughter on the spectrum. She regularly posts on FaceBook about her struggles with her daughter, and how she loves her daughter but hates autism. She complains that they often have to leave school events early, and just once she wished she could stay through a whole event and watch all of her children.

I admit that I only have one, and he is relatively high functioning.

I also remember feeling that way.

And I was a single mom.

(I know not everyone will agree with me, as this is a major point of contention within the autism community, and the line drawn seems to coincide with functioning levels. Autism is a struggle for most, and parents will spend our whole lives trying to figure our kiddos out. This opinion is based on my own experiences.)

At some point, though, there was a shift for me. The more “battles” you have to choose whether or not it’s worth it to fight, you begin to see hypocrisy all around you. You begin to question the structure and rules in our society, and how arbitrary they seem. Why do you have to keep your shoes on during a play? Is it really that big a deal if someone wears the same shirt everyday, as long as it’s clean (I’m looking at you, Troy Landry)? Do I really have to worry so much about the guy with the white beard being approached by my child who thinks he’s Santa?

You begin to think about the fundamental difference between children and adults, and how boring we all get. How we lose that sense of creativity and wonder. And how freeing it can be to not have to worry about all of that stuff.

My friend made a comment in her last post about the fact that her daughter needs to adjust to the world, and not the other way around. I respectfully disagree. Yes, we have to teach them to adapt to the best of our (and their) abilities. But. There are enough of us to really make a positive change here, and we have to stop being so hard on our kiddos. We have to start being harder on this cold, dead world that has a vice grip on its arbitrary social structures and rules.

My friend says she’s tired of it (autism), and that she’s exhausted. The fact is, my friend’s daughter will never lose her autism, but the rest of us neurotypicals only need a shift in perspective to allow her to be who she is.

And we need to accept our own kiddos as they are if we ever hope the world to accept them, too.

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Persuasive Writing

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A new strategy that the school has been using since we met for a crisis intervention plan, has been to allow The Boy to send me an email when he is overwhelmed. He can go to several designated spots, hop on the computer and email me about what’s going on or what’s bothering him.

Usually, it entails a couple of emails back and forth about someone being absent. I encourage him to stick out the day, and he does.

Monday, the conversation was a bit more lengthy:

The Boy: I need you to come pick me up from school because I got sick on the bus on Saturday and then (the band director) told me to take Monday off and also, (one of his friends) and (his TA) took today off as well. I don’t want to get the other students and teachers sick. Especially (his social studies teacher) because he missed way too much school within the past 3 months. I even thought (another friend) was out too along with (the first friend) and (his TA). That is until I saw her at her locker at the end of class. I might tell her later that I may not be able to be in Social studies. I also feel really exhausted from Saturday and out of shape and I feel like I need rest. and If you can’t come, maybe Grammy and Poppy can pick me up in the black saturn vue.

Me: I know there are a couple of people absent, but your friends would miss you if you left. I need you to try to stick it out, ok?

The Boy: I can’t just stay here. If I do, I am a little worried that I might get more people sick and then they might miss school tomorrow and besides, (the band director) told me to take today off on Saturday. It’s nothing personal. He just can’t have me getting his other band students sick. I only air high-fived and pretend hugged the girls on Saturday because I didn’t want them to miss school today, although one of them already did and that is (the first friend). So now  I feel like I need to take the rest of this day off and then come back tomorrow, also let Grammy know (the band director) told me to take this day off. and Hopefully (his TA) (and the first friend) will be back tomorrow too.

Me: I’m not sure where (his TA) is but I would guess she’ll be back tomorrow. (The first friend’s) family extended her trip in DC, so if she is not back tomorrow, she will probably be on Wednesday, but she isn’t sick.  You don’t have too much longer, Bubba. See if you can stick it out. I know it’s tough, but don’t forget that if you can last the day, Grammy is taking you to Brrberry!

There were a few more emails back and forth, and then he went back to class. As I’m writing this post, I just got another email about how only one person came back today. But the strategy seems to be working, and I was tickled to see the quality of the language, the writing, and the persuasion he used. And writing is supposed to be one of his deficits! I wonder how far he could get with a little inspired teaching!

Traveling with the Boy, Part II

We had a great deal of fun. The band director put me in charge of two groups of girls (most of whom are The Boy’s friends), and The Boy. He roomed with me.

Both days were non-stop the entire time. I think everyone would have appreciated one less sightseeing stop in favor of a bit more time to eat and breathe. But we did get to see and experience a lot, and ended up walking the equivalent of 16 miles in 48 hours.

The Boy was amazing. We got to our final destination of the day on Friday, which was a parade at the Marine Barracks – a fantastic experience! – and all of a sudden I realized I hadn’t given The Boy his evening meds, and we were going to be in the stands until after 10pm. He was also sitting away from me. I could clearly see him, but what if something happened? What if he got upset for some reason? Would it become a national security incident? Should I alert one of the very nice marines that he has autism? I did nothing, but watched him like a hawk, body taught to spring into action if necessary. He watched and enjoyed the whole thing, “conducting” every piece and loving every minute of it. There was absolutely no issue until later that night, when we finally got into our hotel rooms after 12 midnight. He was trying to log on to the hotel wifi without a password, and I didn’t think I knew what it was. The phone was out of order, so I couldn’t call down to the desk, and I reasoned that it was late anyway. I should have known better, but I was exhausted, too. A doozy of a meltdown ensued, and we rode it out. Luckily, it was relatively short-lived, if aggressive. Then I found the password on the envelope our room key was in, let him get on for a couple minutes, and all was well.

He had been “on” for 18 hours, I didn’t give him his meds until late, he was exhausted, and it was the perfect recipe for a meltdown. Unfortunately, I’m not always at 100%, and when I fall down, I can’t expect him to remain standing.

When it was all over, and he was calm, in bed, with the lights out, I talked to him about how proud I was of him, how he had had an amazing day, and that he would have a great day the next day, too. We just had to figure out a better way for him to cope when he gets upset, but that we would work on it together.

The next day, he woke up a happy camper, and we did have a great day. This kid amazes me every damn day.

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Traveling with The Boy

Tomorrow, The Boy and I depart on a school trip to Washington DC with his band. It is a short trip – only an overnight stay, with a ridiculously early report time tomorrow (let’s hope they haven’t changed that, too), and a ridiculously late return time on Saturday evening, but those two days should be packed with fun and excitement. As long as the weather doesn’t interfere (which it might), and as long as The Boy and I can handle our anxieties about changes to the itinerary, and not being in control of our activities…

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My anxieties stem from my former life as a band director, having taken groups on trips, and the amount of planning and forethought that should go into it. And the amount of communication with the chaperones. All of that should be happening, but as of today, I have no idea for what or whom I will be responsible. I don’t know with whom The Boy is rooming. I don’t know how seating will work on the bus. There’s a whole lot I don’t know, and that makes me anxious.

I’m anxious, too, about The Boy rooming with some other kids (how many? I don’t know…), and if he will be able to handle it. If not, he can always come to my room (I know that I’m supposed to have a single), and if they don’t like it, they can shove it where the sun don’t shine. I emailed the teacher on Tuesday just to make sure this was a fallback option, and haven’t heard back, so I take that as a yes.

The Boy is excited. He gets to travel and see some things, which he genuinely enjoys. He gets to (hopefully) hang out with some of his friends. But I hope he can roll with changes, and maybe not being able to sit by whom he would like, and maybe being put in a group of boys to sightsee, rather than his friends who are girls…

Keep your fingers crossed for us. I think we will have a good time, and I just hope we can keep our anxieties (mostly mine) at bay.

And Then

Yesterday, I wrote about the huge meltdown The Boy had on Thursday night.

And then…

On Friday, I was a mess. After the boys left in the morning, I took a deep breath and then began to cry. I journaled, because writing usually helps. I cried off and on the whole time I was getting ready for work. And I can usually talk myself down, saying, “Ok, you have to go to work now, and you can’t cry at work, so time is up. Dry your tears, and let’s get going.” That did not work on Friday, and there were a couple of moments I had to use a paper towel on my desk to wipe my tears. I texted a friend about how awful I felt.

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It’s like the hangover after a binge. It’s inevitable, you can’t control it, and you really can’t make it go away until it’s ready to go away.

This is why people say that parenting a chid on the spectrum is like having PTSD. I think in my case, it’s more accurate likening it to chronic stress. Either way, it’s not a good thing, and we who deal with it have to be real careful not to ignore it.

To myself and others who deal with this kind of thing:

  1. Take the day off, if you can. It adds more stress to try to be “on” for others and shut those emotions out, and if you can give yourself a day to recover and process, then please do it.
  2. If you can’t take “the day after” off work, at least take it easy, and find something to take your mind off the meltdown. Replaying it over and over in your mind doesn’t usually do much good.
  3. Pat yourself on the back for doing the best you could under the circumstances. You and I both know people who would not be able to do what we do.
  4. Plan some sort of treat for yourself during the day. Something to look forward to, and something positive.
  5. When you have time, express it somehow. Journal, paint, talk to loved ones and friends who get it. Write a letter to yourself and send it, or burn it. Do something with all of that. If you don’t do this, it will fester.
  6. Make sure you are taking time for yourself somehow in your daily life. I know how difficult it can be, but even if you lock yourself in the bathroom for half an hour a week to read magazines, you just have to find some time for yourself to get away from the relentless needs of your child. I think this step helps us find strength when the big ones hit, too.

This is just my advice, from my experience. It’s not an exhaustive list, and frankly, I’m working on many of these, too. Meltdowns are difficult for the kiddo, and the parents, and aftershocks can be felt for days, weeks, and months afterwards. They’re not going going to go away, but we can mitigate the effects with a plan in place. That’s what we autism parents are best at, right? Planning? 😉

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.

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