Category Archives: Bug Boy

I Should Be Careful What I Wish For

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Disclaimer: If you are easily offended by sarcasm, this is not a post for you. Warning: May contain sarcasm, jokes, humor, drollery, jocularity, amusing tidbits, farcical comments, facetiousness, ludicrous speed or comedy. In other words, it’s all in jest and I’m just trying to be funny. And you should never take me seriously anyways. Sheesh. Thank you.

Bugaboo doesn’t speak.

I mean, he doesn’t speak verbally with his voice. He makes PLENTY of noise (and we special education teachers KNOW that nonverbal children are sometimes the loudest children of all, funny how that works, no?) and there has been more than one moment when I’ve asked him to turn it down to at least eleven.

They’ve done an AAC (assistive augmentative communication. I think.) trial with him at school for the past two months. Now, we’ve done AAC trials before and he had NO INTEREST whatsoever. But something has clicked in him. Something is different. Maybe it’s the ten pounds and six inches he grew. Perhaps it is from the two sizes his feet have grown and it’s squeezing his brains back into his feet. Maybe it’s because he is better regulated, sensory-wise. Or maybe his health has been good for a long time and his body can do things it has wanted to do for years.

Two weeks into that trial he was inputting sentences. I’ve written about this before, yo. Pay attention! Anywho, he was telling how he FELT. He was requesting food and places to go. Somedays he’d bring me “Steak, outside” Which meant he wanted to grill steak (INORITE?) or “Dogs, outside” because Daisy, our border collie, can be a bit of a pain in the bum. Or, “I’m happy, shower!” When he was excited about playing in water.

But last week he found the button I was hoping he’d never find.

WHY

Not letter Y, either. He stumbled upon a category I had temporarily moved, since WH-questions aren’t exactly in his repertoire. And all day he would input, “Outside. Why?” or “I want Target, m&ms, WHY?” Overandoverandoverandover.

I’m now convinced that if he could verbally say what he wanted, like out loud and stuff? He’d have echolalia (which THANK YOU BABY JEBUS Bug Boy grew out of about two years ago, though sometimes will still repeat things over and over). And I’d be going insane and covering my ears because he’d be repeating things overandoverandover. And more than just, “I WAAAAANT! I WAAAAAAANT!” Hoe. Lee. Cow.

It’s sort of falling into that, “Be careful what you wish for!” category. Because I’ve HOPED AND DREAMED for this for all of his ten years. And now I’m all “ZOMG maybe having a nonverbal child isn’t such a bad thing after all!”

After all, there was a time that I hoped and prayed for patience.

I’m fairly certain that one was answered. I should keep my mouth shut for now on.

Just sayin‘.

The Perfect Storm

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Ah, Adolescence. The perfect storm.

My boy has changed so much since middle school has started. He’s more self-aware, more aware of what’s going on socially, more independent and more responsible. He’s handling his emotions better, realizing what he’s feeling and owning it. He’s got much better self-control. He doesn’t make daily trips to the nurse (sensory break!) at 2pm and he isn’t coming home and falling apart.

Most days. Ahem.

He’s currently having a whirlwind of emotions. While he can advocate quite well when it comes to adults, he’s having trouble navigating his peers. He has difficulty making new friends and sustaining relationships. He WANTS friends. He WANTS to fit in. But other kids? They just don’t get him. And I’m not sure he gets THEM.

It’s no surprise to me that he’s more comfortable around other kids with autism. His best buddies, for the most part, are either Aspies or having a tough time socially (and with executive motor function). There’s a whole gang of them that hangs together. They belong to the same clubs, are in the same math class and have deep discussions about Minecraft at Lunch. When they get together they dig trenches and set up army men and recreate the Johnstown Flood. They watch movies and rip it to shreds because it was NOTHING LIKE THE BOOK THIS IS SO STUPID AND THIS SCENE IS SO FAKE I MEAN REALLY.

But even there he has difficulty. Right now he wants to QUIT ALL THE THINGS. He wants to quit orchestra, though he wants to continue with private violin lessons. He wants to quit his newly-acquired percussion lessons because he’s afraid of the High School Marching Band instructor, even though he won’t be there for three more years. He wants to quit fencing. He isn’t sure he wants to do diving this summer. He doesn’t want to go to any of the summer camps I’ve mentioned. I’m trying very hard to hold the balance between allowing him to make choices that make him happy and not allowing him to withdraw completely.

But that’s what he’s doing.

He’s withdrawing.

There’s a big-deal trip coming up for school. All year the 6th graders study a particular country. It’s sort of a theme for the year. They talk about the UN, geography and world culture. It’s pretty cool, actually. It culminates with a trip to the UN in NYC. For this trip they need a plethora of chaperones. Naturally, someone from the house of DG will attend (either TGILW or myself). But the kids have been charged with making their own groups this time. Groups of six. The problem? The 6th grade is divided into two teams. Team A goes one day and Team B goes the following week. Guess where the majority of his buddies are?

That’s right! The other team.

So even though the kids in one of his club teams is on the same 6th grade team he is? He cannot bring himself to ask the other kids about being in a group. He tried to get me to email everyone and I did mention it to their parents but ultimately want to leave it to them to decide. And my boy is panicky. Because he’s worried he’ll end up IN A TEAM OF GIRLS. Or worse yet, with a few other “misfits” (his term).

That brings us to a whole other level self-awareness. My boy is currently aware that he doesn’t fit in with the majority of the other kids. He realizes he is different. And while he celebrates his differences and is totally cool with them, he isn’t cool with the difficulty he is having navigating the Social Seas.

And that breaks this Momma’s heart.

And all I can do is talk to him, assure him, reassure him and give him some ideas on how to do it.

But when you’re talking to your child for the UMPTEENTH time about making his group and talking to other kids and finding out who has six and who needs another or two, and he says,

“This sucks. I’m never going to find a group. The other kids all think I’m a weirdo.”

It’s really hard to keep things in perspective. Especially when hearing that makes you want to cry.

How to Raise a Self-Advocate

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I’m fairly certain I’m doing SOMETHING right.

Bug Boy is learning to advocate for himself, see. If he’s having a rotten day and knows he’ll bomb a test because he’s too stressed out? He’ll ask his teacher for an extension for the next day.

If he doesn’t like his current speech group and wants to go with his friends to THEIR speech group and the teacher is all, “No, I’d like you to stay in your group.” He’ll come back with, “But I’m SUPPOSED to be learning social skills and if I’m with my REAL FRIENDS I can practice better, right? So I should be in the OTHER group.”

Can’t argue with that.

This is the same kid that went to school last year in the middle of an OCD crisis and lobbied to wear gloves in all of his classes. He even had a pair of gloves for orchestra with the fingers cut out so he could still play. His art teacher even gave him special vinyl gloves to use for his projects.

Now he’s hitting adolescence. And he’s still asking for what he needs (when he realizes he needs it), like extra time, a computer to type, a different seat, etc. HE’S asking for it. HE’S doing it himself.

I’m so proud of him, y’all.

Now he has more and more questions about autism. He has things he wants to say. We’re having detailed, lengthy discussions about the nature of disabilities, how it affects him and his friends and what it means to him. He’s asking about his brother. He’s asking about the future. He’s thinking about the way people with disabilities are and should be treated.

He even told me, “I’m so glad we’re talking about this, Mom. I love talking about Autism with you!”

Last night at the end of a discussion, when he told me how he felt about having autism and how he perceives things, he mentioned, “I like having autism. It’s a good thing. I like that about me.”

I was proud of him. Because I like that about him, too. No, it isn’t always easy. It isn’s easy for his brother and it sometimes isn’t easy for his parents. Sometimes we’re just plain exhausted. But I had to ask him, “How about your brother? Do you think it’s a good thing for him, too? Do you like his autism?” Loaded question. Unfair of me? Maybe. But it’s something I wanted him to think about.

His reply?

“Of course, Mom. His autism is just, well, autism. It gives him his super powers (speed, strength, etc). “

Indeed it does.

He’s well on his way to becoming a great advocate for himself. And someday, when he needs to, for his brother. He’ll excel because he sees past disability and into the person.

The way it should be.

When The Apple Doesn’t Fall Far From the Tree (Happy World Autism ACCEPTANCE Day)

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Hi! Did you miss me? My mid-life crisis is over and I dyed my hair back to orange, wanna see?

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Got sick of the pink. I don’t even like pink. Why did I do it? PEER PRESSURE (Stark. Raving. Mad. Mommy. Made me do it).

Anywho, since the last time all ten of you stopped by, my life kept going (as it does) and I was up to my eyeballs as usual (as it happens) and I got overwhelmed again (as one does) and here I am a few weeks later, meds adjusted, clean bill of health, finished PT (thank you baby Jebus) and feeling more like my old self again.

And the other people in my family are just peachy, too. In fact, things are SO AWESOME around here I’m waiting for the proverbial “other shoe” to drop.

See, the Apples don’t fall far from the tree. In this metaphor the Apples are MY KIDS and the Tree is ME (and The Guy I live With). In other words, when we’re exasperated about their quirks and behaviors, we really don’t need to look that far to figure out where they get some of this stuff.

Like Bugaboo’s energy level? They haven’t called me Energizer Bunny for years for nothing (and TGILW isn’t any different).

Bug Boy’s drama and emotion? Your’s truly!

Bug Boy’s hunger for learning and nose stuck in a book at all times?Yep! Me again!

Bugaboo’s athletic ability and amazingly advanced motor skills? Actually, we haven’t a clue where that comes from because The Guy and I are about as coordinated as a bag of rocks.

Let’s just say we’ve had our share of stitches, broken bones, injuries and the like. So clearly that one was inborn or there was a mixup in the hospital nursery. Except we know he’s ours because he can also fall off of chairs (like his brother) when sitting perfectly still and get a bruise just by thinking about walking.

Then there are the boys’ quirks. Like the autism, ADHD, OCD and stuff. If you think about it, it’s REALLY not a mystery to see where all of it comes from. Let’s just say that when I was a kid I washed my feet obsessively. And my hands. I do everything in the same order every day (like my shower) and I need lists to function. I can’t order a pizza because calling for takeout gives me major anxiety. When I have to make phone calls I actually have to SCRIPT WHAT I SAY. The husband? Won’t even answer the phone. Texting and social media was made for people like us.

Sensory issues? You name it, we’ve got ‘em. I’m the “NATURAL FIBERS ONLY, no tags, smells and lights make me stabby” variety. Husband is “I can pick noodles out of a boiling pot, NOISE IS TEH DEBIL, FLOWERS MUST DIE” variety. Our kids are a perfect combination of both. One is easily over-stimulated, the other one needs a fire lit under him to notice anything (and he’s touched fire before!).

You smell what I’m cooking here? (But I don’t like the smell of cooked meat in my house. Hence, we grill 365. No joke).

 

As for the World Autism Day, I thought I’d link to a few posts from years past. Just so you can get an idea of what we think.

A link to Last April and my “Autism is…” posts

Last year’s World Autism Day Post

Great Expectations

What Autism is and Isn’t (World Autism Day from 2011)

World Autism Day 2010

Just Sayin’, The Sequel (Another Autism Month Post)

Autism in the News (2009)

DG’s Big Phat Post for World Autism Day

I was talking to the Bug Boy today when he got home today. We chatted about Autism Awareness Month and how some folks wanna change it to Autism Acceptance Day/Month. We talked about what he thought about having “a disorder” and how he felt about terminology. I’m loving that we can have these in-depth discussions these days. I love getting his insight. That’s when we talked about self-advocates and parents and how parents can’t be the only voices. And why adults with autism have a voice and why their voice is just as important, if not more-so, than parents.

Which is when he gave me stink-eye. And said, “Uh, Mom? Soooo you’re autistic, you know.”

And proceeded to list the reasons why he felt I was. And I couldn’t argue with any of it. Not one bit of it.

See, we are AWARE of autism. Now, to get people to accept it.

Bug Boy’s Morning Getting Ready Tips

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Bug Boy had orchestra this morning. Normally, getting this kid out of the shower in under thirty minutes is an Olympic feat (Yes. Thirty. He cleans while he is in there and then gets lost reading shampoo bottles. I KNOW). This morning he had to leave nearly 20 minutes earlier than he does every other day of the week. I KNEW it would be a push and he’d run out the door with a half-eaten protein bar and forget half of his stuff. Per usual. But, like a good Mommy, I reminded him he had orchestra, told him to take his fastest shower ever and left the room.

Fifteen minutes later I didn’t hear the water running but there’s commotion in the bathroom. I went up to the bathroom to find him dressed, hair combed, and putting on his socks. He was clean. His hair was clean. He was fully dressed. THIS IS A MIRACLE, PEOPLE. And I asked him how in the heck he got ready so fast, after I picked my jaw up off the floor and reattached it.

Me: I’m shocked. You’re ready! WAY TO GO, DUDE! This makes my day start off pretty awesome-like.

Bug Boy: Well, I got ready last night!

Me: Yes, you mean getting your clothes out ahead of time?

Bug Boy: Not exactly. See, I put my underwear inside my pants so that when it was time to get dressed I could just put them on at the same time! It saved me TONS OF TIME this morning.

Me: Uhhhhh. Okaaaaay.

Bug Boy: Oh, and I remembered when I was in the shower that I have to finish (arbitrary assignment) for class this morning because it is due today.

Me: Sigh.

There you have it folks. Motivation to get ready faster. And becoming much more responsible for himself, though I kinda wish he did the assignment, you know, last night? Not at 6:55 am when he has to leave in five minutes for orchestra? That.

Good Enough

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Bug Boy has come a long way since preschool and Kindergarten, when we first sought out intervention. He has FRIENDS now, people. He has activities he enjoys. He is becoming more responsible for himself. Making him pack his own school bag, lunch and water bottle and making him pick out his own clothes is paying off. He’s doing it automatically now. ZOMG I KNOW, RIGHT? Which was my goal, yes? Functional independence. Since executive functioning doesn’t come naturally to him (apple. Tree. Me? Yep.) he had to be directly taught things like organizing his school work, not relying on memory for homework and learning to write it down, organizing a paper or essay (graphic organizers FTW!). It’s all coming together. All the hard work and dedication from his teachers from the past 7 years of school-aged programming is coming together. I’m thrilled with how well he has done. (I’m also realistic enough to realize that when he becomes a teenager he’ll forget everything I’ve taught him in a matter of minutes!)

The problem, however, is what is “good enough” and when we should demand more. We’ve always tried to teach him that his grades were HIS. What he earned was not what “the teacher gave me.” He needed to learn to own it, to realize the intrinsic value in what he was doing. He has always been a good student and he’s eager to learn. Hungry, even. Soaks it up like a sponge and we actually have to do things like STOP LEARNING SO MUCH and TAKE BOOKS AWAY because he’s sometimes obnoxious with it. These kids today with the independent learning!

In Elementary school in our area they just don’t push grades. Things are very individualized. The report cards are really just a list of skills in each academic, social and self-help area with letters that stand for “frequently, consistently, with-support, sometimes and needs support.” It was entirely possible he could get a report card full of Fs. And that was a good thing. I am not one of those folks that thinks there is always a better way to do things. Having grown up going to parochial school with real letter and number grades and S/Satisfactory or U/Unsatisfactory for things like conduct and effort (and handwriting. which I flunked. YES, FLUNKED!), the elementary report left me underwhelmed but I understood why they used those reports. And the section for teacher comments was always the same and that’s what mattered to me most: enthusiastic learner, always helpful, helps other students, pleasure to have in class. So even if he had a few “with-supports” in his skills section, we always reinforced that if he truly did his best, the letters didn’t matter. What mattered was how HE felt about them. He always felt okay with it.

The first marking period in middle school he set himself a very lofty goal. He wanted to make honor role. I pleaded with him not to put so much pressure on himself, as we are well-aware of what anxiety does to him. He is sometimes his own worst critic. Gee, where does that come from? Hmmmm…anywho, we told him that the grades weren’t as important as him learning to adjust to middle school. We emphasized what a BIG transition it was, how different it was, how he had eight teachers to report to now, not just one plus his support teacher. He insisted he could do it. There were a few hairy moments but he pulled it off. Six As (one an A+!) and 2 Bs. And the B’s were barely a B, just under an A-. HONOR ROLL! We, of course, were thrilled. Bug Boy and his entire 8th period nerd herd math class were all, “A-? ZOMG! NOOOOOOO!!!! I CAN’T HAVE AN A-!” And Bug Boy was JUST under that with a B+. And devastated. Yep. With a B+. A B+ in college organic chemistry or Botany would have been A FREAKING GIFT. But 6th grade honors math? Death sentence, apparently.

But, like we planned to do, we once again supported him and told him that his grades were marvelous, the comments from his teachers wonderful and that we were proud of him just for working so hard. I even told him that the one or two Cs he brought home from missing assignments may have brought his grade down but he kicked but in projects and tests and therefore pulled it off. “You did GREAT and better than we expected! We’re so proud of you! Way to go!” And he was ok with it after a few days.

Flash forward to this trimester. He’s slacked off a TEENSY bit. Forgot to write homework down here, forgot about a quiz there. He’s still with all As and a B (guess which class? Nerd Herd). He’s still holding his own, is less stressed out than the first marking period. But this time his attitude is different. “Oh. A-? That’s awesome. I’m cool with that. Oh, to get an A I have to do 15 out of 20 responses and if I do more I get extra credit? I’ll just do 15.” He’s always been a “that’s all I have to do to get an A? I’ll do no more.” Kind of kid.

So. Now I’m making him do ANY extra credit that comes his way. Why? Because if he bombs something, there’s a cushion, see. Momma is SMAHT. And he was resentful at first (but Mom, you said I CONTROLLED my performance in Middle School!) and now he’s seeing the light. But still not happy to do any extra work over and above what he needs to squeak by.

I’m loathe to reassure him that the 75 he got in the math test was ok when I am frustrated that he KNEW the material but didn’t understand the question or problem. It’s difficult to say, “Oh. And 80% on the human rights booklet? Self-graded? Oh. You didn’t feel like doing it. Well, that’s your responsibility and that’s your consequence.” I’m trying REALLY HARD not to push and to let him have the performance all to himself. My job is to catch him when he falls and help him get back up again. Not to keep him there.

Am I crazy? Is 80 good enough? Am I telling him the right thing when I say, “Well, are you REALLY satisfied with that grade or do you think you could have done better? Yeah, that’s how I feel, too.”

I think so.

But either way, this is all on him. HE’S doing it himself. HE’S learning to fall and get back up again. And even if he doesn’t make honor roll? I’m still hella proud of him.

Holy Crud, I have a Twelve-Year-Old!

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I was going write this two days ago but then life happened and stuff so I never wrote it. I’m sure you’re all (the tens of you) surprised to learn that I do indeed have responsibilities. Like taking care of people who need care-taking. And going to appointments. And writing letters and making phone calls and making appointments. NO, REALLY! It’s true! I do stuff besides blog! (I KNOW!).

Monday I suddenly had a twelve-year-old. I know, I could have looked at the calendar. I mean, I have google and this fancy smart phone. You’d think I’d look at it once in a while. I didn’t REALLY forget his birthday. I mean, this is a kid who announces his birthday is going to happen three months ahead. We never make a big to-do over birthdays in my house (and none of us actually like cake) but he needed me to know he was going to be twelve. And for those of you not good at math, twelve is ONE YEAR before thirteen. And thirteen is important because? (No, not because he’ll be a teenager.) Thirteen means he’s going to go through a growth spurt. He learned that in Health! And growth spurts are really, really important to a kid who is in the 4th percentile for height and weight for his age.

No, he’s not short. He’s petite. Mommy was the same way and then grew 3.5 inches after high school ( I KNOW). The Guy I Live With isn’t exactly tall, either (a mere 2 inches taller than me).

Bugaboo is also petite. Though for weight he’s 50 percent. Height is the same as his brother. They won’t be enormous as adults. Thanks to the wonders of science and the fact that they both have medical conditions that need to be monitored regularly, we did genetic testing (to see what sort of disorders could be related) and found out that their adult size is gestimated to be between 5 feet 5 inches and 5 feet 6 inches. In other words, my kids are built PERFECTLY for diving and gymnastics, which they take part in. So WINNING!

Bug Boy has turned into this amazing kid. He has a super sense of humor and even though we hit speed bumps now and then, school is SUPER DEE DUPER. We’re fortunate enough to live in a good school system (CHA -CHING! That was the sound of money leaving our bank account to pay taxes) and they have a good set up for kids like mine. Middle School has actually been going well so far. We love Bug Boy’s teachers, he loves school (always has!) and he has had fabulous grades. He even made it to the honor roll, despite my warnings not to put tons of pressure on himself. I’m one of those lame parents that told their kid that the grades aren’t important as long as he is working to the best of his ability. Naturally, he took this to mean, “Anything under an A- is NOT ACCEPTABLE. So don’t do that, mmkay?” And an 85? That’s a B. He was crying for days when that happened.

For realz, though. This is a kid who spoke late. Who at one time spent 15 hours a day pushing around a plastic lawnmower (and pushing and pushing). Who kicked kids for wearing the “wrong color.” Who clung to me screaming when I dropped him off at school and who would, if he saw me there during school hours, run to me crying and begging me to take him home (yet, he loved school. Honestly!). He had frequent tantrums in and out of school. He had massive anxiety and OCD flare-ups. Who couldn’t take the bus for two years because it was too overwhelming. Who has spent the past nine years in speech therapy to help with conversational skills, reading comprehension, inferences and expressions. My kid.

And he’s thriving.
And he’s awesome.
And I think he’s the cat’s meow.
Except I’m allergic to cats. So Dog. Dog’s meow? Dog’s bark. I dunno.
He’s awesome.

And when he’s running around the house with a nerf sword down the back of his shirt, spouting off hurricane facts, telling me about the Titanic and making up his own words to songs? I couldn’t be prouder of hour far he has come.

I am pretty sure I don't have a picture of this kid where he isn't making some sort of goofy face.

I am pretty sure I don’t have a picture of this kid where he isn’t making some sort of goofy face.

 

 

And can’t wait to see how far he will go.