Tag Archives: ASD

Has this Happened to You?

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You are at some school or other kid-related function, and a parent begins talking to you as if they know you. She or he prattles on about their child by first name, and your child by first name. But you’ve never met them before in your life.

IMG_4054-0I suspect this is common for those of us with kiddos on the spectrum, at least those of us whose kiddos are not-exactly-verbal. In my experience, The Boy becomes a kid at school that everyone knows, or at least knows of, but because we have limited social interaction with the same students outside of school, I know none of these kids. It is also due to the fact that The Boy is fairly nonverbal about anything that happens at school.  This is why I try to go on at least one field trip per year, so I can put names with faces.

The latest occurrence happened at an Autism Society Friend and Fun event, and I met a mom and her daughter, a girl who is a year behind The Boy in school. He’s gone to school with her for two years, so her mom assumed I knew her daughter, or at least knew her, but I had never heard her name mentioned before, and had never seen her before.

I’m clearly at a disadvantage when this happens, and never quite sure how to respond without seeming rude, and I really should come up with something to say. I would love to know more of these kids and their parents. It would be great for both of us to make more connections, but it’s almost as if he is a celebrity and lives a double life.

Apparently, what happens at school stays at school, and the first rule of school? Never talk about school. 😉

Paint Chips

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The Man and I have both been trying to get The Boy to do a little more around the house. We finally completed several of the Independence Challenge prompts, getting The Boy to plan a meal that he would make for us (pizza, what else!), go grocery shopping for supplies, follow the directions, prep the ingredients, and cook the meal. But it took a lot of prompting.

While at the new house the other day, The Man was working on getting The Boy to water the newly planted sod. He needed him to stand there and soak the same area for a couple of minutes, and even that was difficult for The Boy to attend to for too long.

It’s a struggle, and I often worry about his future in moments like these. Will he have the patience to follow directions at a job? Will he be able to work independently without someone hovering, saying “No, it needs a few more minutes of soaking”?

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Paint Samples by Todd Van Hoosear

We are in the midst of painting the interiors of the new house, and struggled to find the right color, buying five $4 samples before we found the right one. Many trips to the home improvement store, sometimes with The Boy, but often without. We stopped after I picked him up from Grammy’s one night to get a fresh batch of paint chips for possible colors, after the one we had thought would be perfect was much too yellow. I was trying to be quick because we had groceries in the car and it was hot outside. Suddenly, I looked over at The Boy, and realized he was sorting the paint chips into the right slots and straightening them. No one had asked him to do it. He saw that it was kind of a mess, and he felt compelled to bring into some semblance of order.

It gave me hope. I’ll never have a definite answer to my questions about his future until the future becomes the present. But moments like this allow me to see the possibilities, and that’s enough for now.

Band Plan

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I met last week with the high school band director who had attempted to tell me that he didn’t think marching band was a good idea for The Boy, based on the experiences of a boy on the spectrum that had been in it last year. By the way, that boy is a friend of ours and busted his behind for that group, and found it very difficult to make friends in this marching band, but I digress… The high school special education teacher was there too, and I’m so glad she facilitated. She looks like she will be a rockstar for The Boy, and unfortunately, he needs a strong advocate in his own school system.

Shockingly, the band director had changed his tune a bit, although he did point out that the middle school band director also thought marching band would not be a good idea for The Boy, either. “But I’m not closing the door…” he said. Kinda hard when my foot is wedged in it, huh?

IMG_5331I had come prepared with a list of applicable laws, just in case, and a list of modifications and alternatives. Turns out, I didn’t need the laws (since he wasn’t “closing the door”), and when I suggested the first alternative, they both seemed receptive. After hashing out some details, we devised a plan: The Boy will play at Friday night football games only, and will play his sousaphone in the “pit” section, which is where the semi-stationary percussion instruments like xylophones and timpani are. This will allow him to participate without having to learn the “drill” (complicated moves), and without having to rehearse after school every day. He will be in the marching band class, but if they are not rehearsing music, the band director may send The Boy to English with the special education teacher, where he can work on any homework he may have, or get a second “dose” of a subject in which he has deficits.

And he will be in concert band in the spring, regardless of whether or not there is a second, “lower” band.

So, we have successfully shoved that damned door wide open, and created a place for my kid in their program. See how much can be accomplished with open minds at the table?

The Math Muddle Update

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The Senate Committee has sent the bill to the Senate, but has modified it to allow students the choice of taking integrated math classes, or a more traditional set of discrete math classes. They have also re-instituted the provisions which allow students with disabilities to substitute classes in order to earn a diploma.

We, personally, have dodged a bullet, but the teachers may now be left scrambling, trying to figure out how to offer completely different classes concurrently, and the senate committee members comments were basically summed up as, “suck it up – you’re teachers and you can figure it out.”

Why, oh why do they meddle in a profession about which they have no clue? Do they issue mandates on how medical professionals examine their patients? Do they issue bills requiring dentists to fill cavities according to a proscribed set of guidelines? Nope, just the educators get the benefit of their omniscient wisdom.

It is no wonder we parents of special needs parents have chronic stress and anxiety, when issues like this face our kiddos. When their very futures hang on the whims of pompous know-it-alls who have the power to change policy at a moments notice. I avoid being political here, but voting is necessary. We need to ensure that level heads prevail with our children’s futures on the line. Vote out the bad, and vote in the good. That is our only power, and it’s on us if we don’t use it, or if we throw it away.

Battle over Band

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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?

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Middle School Reflections

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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…

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Eyes Averted

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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

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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

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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

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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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