Today is the Day

Posted on by

0

Today is The Boy’s last day of 8th grade, of middle school, of being anything but a teenager. He’s excited. I’m excited. We’re all excited. And a little wistful, too. Even The Boy exclaims, “How did we get here?” and “How did this happen?” I tell him time flies, and if you blink, you miss it. I tell him all those old cliches, those that have been around so long they must be true. It sure feels that way.

Where is the 5 pound 6 ounce baby I was holding in my arms yesterday?

Where is the toddler who got away from me in the department store and hid in the middle of a clothes rack?

Where is the preschooler who couldn’t wait for the water to warm up to get into the small pool we had bought, and whose smiling lips turned blue?

Where is the 2nd grader who kicked his classmates?

Where is the 4th grader who sang the Star Spangled Banner at the high school football game with his choir?

Where is my 7th grader who began to have crushes on girls?

Who is this extra man in my house who is taller than me, requires shaving at regular intervals, and has hands and feet bigger than his dad’s? Who can barely fit on the couch if he stretches out on it? Who “practices” driving every time we get into the car?

Ah, yes. He’s my son, even though I can’t possibly be old enough for it to be true. My son. And me over here? The one with a bit of dust in her eye? I’m one proud mom.

finding our own path

 

Battle over Band

Posted on by

0

In a week, I’ll meet with the high school band director and the high school special education teacher, and hopefully walk away with a plan for The Boy to be able to continue participating in band.

If you recall, after missing a meeting with me, the band director told me at orientation that he didn’t think The Boy should be in marching band, but there was a possibility that concert band in the spring could work out for him.

When I mentioned this to the Director of Special Ed for the district, a phone call was made to the high school principal to discuss it, apparently. Why? Because it is against the law to deny a special education student access to curricular, extra-curricular or co-curricular programs.  Which law? IDEA is pretty explicit, and in fact, if The Boy wanted to, he should be afforded all supports for the extra- and/or co-curricular programs that he is afforded in his regular classes (i.e. if he has an aide in class, then he should have an aide on the field in marching band, helping him learn his drill).

In fact, marching bands across the country have embraced their roll as an opportunity for students with disabilities. Kids with autism, kids with CP, kids in wheelchairs, and there is even an entire drum corps made up of kids with special needs.

Yet, this guy thinks he can tell my kid no. Or rather, he thought he could until I squeaked.

Now, will The Boy be up for all of the summer, evening, and weekend rehearsals that often entail grueling hours in the sun? Probably not. Will he be able to learn an entire drill and carry a sousaphone that whole time? Probably not. But there has to be a place for kids like mine, and if there isn’t one, we’ll create it.

You can’t just say no, sorryboutchya. And why would you?

IMG_3890

 

Middle School Reflections

Posted on by

0

We went to lunch at the beach on Saturday after cleaning up all the chunks of drywall left by the drywall hangers at the new house. We ate outside at a picnic table, and were talking about The Boy being almost done with middle school. The Man and I both agreed that not too many people would like to re-live middle school, and that he had much to look forward to in high school.

“Why don’t people want to go back to middle school?” The Boy asked.

“Well, I can tell you that kids were kind of mean to me when I was in middle school,” I said. “I don’t have very many good memories.”

“And I don’t have too many memories of it at all,” The Man said. “Nothing really great happened.”

The Boy took a moment, and then said, “I think it’s different now.”

“It is?” I asked carefully.

“The kids at my school are nice. There aren’t too many mean ones. I have good memories of middle school,” he said.

I touched The Man’s hand and gave him a look. He raised his eyebrows back at me.

That is something that every special needs parent wants to hear. That her child has good memories of middle school, and judges his classmates to be nice people.

Just a bit of dust in my eye…

DSC03241

3 Guest Limit

Posted on by

0

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?

FullSizeRender

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.

Eyes Averted

Posted on by

0

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.

 

Summer Day Camp

Posted on by

0

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? 😉

10173574_10203807926987289_768444852212624986_n

 

Wrapping it Up

Posted on by

2

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!

night-office-shirt-mail

Acceptance Begins with Our Own

Posted on by

2

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.

pexels-photo-69100

Persuasive Writing

Posted on by

3

typewriter-keys-mechanically-letters

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

Posted on by

0

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.

IMG_5108