Category Archives: Autism and Stuff

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‘.

He’s a Little Runaway. Again.

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I’m having kind of a rough week.

Because deceased parents and funeral planning aren’t stressful enough, Monday night we had a wee bit of excitement in my house. You know how I say I’m never bored? There’s a reason for that. It’s because I AM NEVER BORED. Basically, there’s non-stop chaos and excitement around these parts.

Monday night my Aunts decided to provide some dinner for our family. A few of my siblings were going to get together and look through pictures and make a little collage for the funeral and luncheon. Ok, 4 giant posters of pictures, but who’s counting? Anywho, we KNOW it is spring and Bugaboo is more restless than usual, thanks in part to higher pollen counts and the nicer weather. We have been more vigilant than usual, due to this restlessness. We’re back to padlocks on the doors (not just locks) and I even went out and purchased new door alarms, since the old ones went to door alarm heaven.

When folks come in the house I have to, you know, unlock the doors? And when there are twenty people in my house and everyone is unloading cars, bringing in food, hugging and the like it’s a little…chaotic. We try to lock the door immediately and we no sooner lock it than another person shows up. So in the midst of the chaos, Bugaboo was darting about, back and forth between doors. He’d slip outside, play a bit, come back in. Then we locked the back door. By the time I got some plates and napkins out I decided to head to the front door and lock it. Except it was unlocked.
Immediately The Guy I Live With and I searched the house.

No Bugaboo.

We checked the backyard and neighbors’ backyard.

No Bugaboo.

That’s when I hopped in the car and headed to the playground while my family checked a few more neighbors’ swing sets and trampolines. Now, we live TWO BLOCKS from a playground. Since I live on the corner you can see the playground and park from my back yard. The few times Bugaboo has made it to the park he has been sitting in the middle of the softball diamond, happily clapping and stimming away in the orange dirt. He typically sees me and sighs and gets up, following me back home or to the car. Except this time, no Bugaboo. I walked to the other end of the field to the swings and slide. No Bugaboo. I got back in the car and drove around all four sides of the park. Still no Bugaboo.

I went back home and yelled to my sister, “Call the Police.” Within two minutes three local police departments were there taking a report of his description and circling town searching for him

At this point my family was going door to door. The next thing I knew, our entire block was out looking, checking other parts of our little Mayberry-esque town. They searched every back yard, every swing set, every trampoline. They checked every back yard swimming pool they could find. Some of them hopped in their cars to circle town and look. People started checking nearby busy roads, thinking maybe he tried to walk to the pool or the Big Red Bullseye store.

Still no sign of Bugaboo.

A Faceplace post and email later, the entire town was out looking. I’m not being facetious. There were folks on ALL FOUR BLOCKS of our little town checking every place they could think of. They searched high and low. They got into their cars and circled, checking for him. They stopped and looked at every kid they saw.

An hour had gone by at this point.

Still no Bugaboo.

This while I stood on the front lawn, clutching my phone, sobbing, hoping for a miracle, hoping this wasn’t THE ONE TIME we couldn’t find him. It had been an hour. It was starting to get darker. The warm spring day suddenly became cooler.

At some point my sister and our babysitter ended up back at the park. Since there was a softball game going on and the park was packed with folks watching it and using the playground, they went person-to-person asking if they had seen my sweet boy. And suddenly someone said, “Wait. I noticed a little boy in that truck over there about thirty minutes ago. He’s been bouncing around and having a good time.”

(at least, that was reported back to me, I wasn’t there, see. Me, lawn, phone, cry, etc, etc).

Guess who was in the truck? The entire time? And no doubt got into said truck because so many people were at the park and he didn’t quite know what to do?

If you said Bugaboo, ten points for Gryffindor.

Now, if you’ll excuse me, I’ve got an adrenalin rush to get over and some more padlocks to install.

( PS – if you’re asking about the tracking bracelet we had? Company went out of business last summer. Hooray. Guess who’s looking into tracking bracelets again?  If you said me then ten points to all houses. Except Slytherin.)

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.

I Want a New Drug

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Bugaboo has really taken off with the iPad. He still has leagues to go but he’s enjoying communication with the assistive technology app. In fact, I’m beginning to think he prefers it. He keeps sticking his PECS book in weird places. Like he’s hiding it.

Funny kid.

Last night he was restless and gave us a difficult time going to bed. He kept reappearing in the kitchen. Often we have to go camp out with him in bed until he falls asleep. He likes to stick his sticky hands and dirty feet on me when he sleeps (yes, he does bathe nearly every night but they still manage to be sticky/dirty at bed time). Good times, good times.

Anywho, he would NOT go to sleep last night. Perhaps he was hungry? He kept running downstairs. And yesterday I was in a FABULOUS mood (read: in a rotten mood) and was growing more and more frustrated. He finally flopped down on the couch at one point and fired up the iPad, inputting, “I want to go, Target, R. X.”

For those of you not good at math, he wanted to go to Target. Duh.

But then I was all, “RX? What the what? What’s he talking about?” Assuming he was just typing in random stuff, as he does, because he likes to just hit random buttons and listen to the voice on the output over and over and over again.

“Nachos nachos nachos nachos nachos nachos…

And that’s when it dawned on me. RX means prescriptions.

We get our scripts at Target.

Sometimes we get our scripts and not much else. If it’s a bottle of water or something, I get it at the Pharmacy counter.

And next to the Pharmacy Counter? A big ole sign that says, “Rx.”

I kid you not.

I’m telling y’all, something’s going on in that head of his. And it’s big. HUGE. REALLY HUGE.

I can’t wait to see what happens next.

Everybody Talks

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So. An iPad update. I know all ten of you have been waiting on the edge of your collective seats and stuff.

I may have mentioned a few times that Bugaboo has done well with the iPad. I credit it (and several apps) for making him interested in learning to read, learn his letters, sit still for more than thirty seconds and for being his one-stop shop for all things autism. It has his favorite music to calm and soothe him. It has games he loves to play (*cough* Fruit Ninja *cough*). It has his favorite videos (Hint: He’s the one, he’s the one, he’s the really useful engine that we adore…EVERYBODY SING!). He plays games with letters, plays autism-specific games, and uses it for social stories. Heck, he’ll interact with us. It’s been a win-win all the way.

Some folks might think of it as a ridiculously expensive toy. But honestly? I don’t think the Big Fruit company ever anticipated how much iPads could change the world for those with disabilities. IPads (and iPod touches, and minis, and iPhones) can be used for communication devices now. Never mind the educational aspect and the entertainment value. Can disabled people live without them? Absolutely. They’ve done it for years. But now that we’ve gotten a glimpse of what our child is capable with one, why would we ever want him to live without it? This is literally the first thing that has EVER put him on a level playing field with kids his own age. He looks like every other bored ten-year-old waiting for his order when we’re out to lunch. No giant, clunky communication device. He has access to an iTouch, too, so we often bring that with us on outings just to have one less thing to carry, since I can slip it into my purse.

Recently, though, things have changed drastically. He isn’t just a ten-year-old with a screen in front of his face (seriously, I never thought I’d be HAPPY my kid is staring at a screen like kids his age. There’s irony for you!). He’s using it to communicate. We purchase proloquo a long time ago (in a galaxy far, far away) and we would bring it up here and there but he didn’t seem to have much interest. He was using minimal sign language and PECS to communicate. The problem was he tends to be a lazy signer and approximates or takes short cuts. Meaning, he uses the same sign for several thing and expects mommy to be his translator. And the PECS? While he’s made huge gains in communication and I don’t regret using them one iota, I get sick of losing his favorite icons (cheese curls, pizza, outside), sick of finding them in the sink or toilet, sick of the dog hair hair sticking to the velcro and sick of losing the *#&$% sentence strip.

At his IEP a few months back I mentioned we wanted to trial communication software. His new speech therapist was all about it. But there are waiting lists. Long waiting lists to get trial devices. We had previously done a trial with an ACC device. You know, adaptive communication something something? That. But Bugaboo didn’t really seem to know what to do with it or understand what it was for. He hated it. I was disappointed. I really wanted this to happen. But I’m a patient Mommy (LIES! ALL LIES!) and I want what is best for him and sometimes I don’t always know what that is. But he seems to know what he can do and what he wants so it’s up to me to follow his lead.

That’s when I thought about the iPad. I’ve seen what other autistics have done with speech apps. Why not try it? We’ve at least been able to get him to pick from a list of food items while on outings. It was worth a shot.

Fast forward to last month. I asked about the trial. STILL ON A WAITING LIST. That’s when Momma Bear got impatient and asked the School District very nicely to make sure the Bugaboo got a device since, you know, HE HAS NO EFFECTIVE COMMUNICATION. A few area places with loaner devices were contacted. Needless to say we had a device to trial the next day.

The first day I received a note in his communication log (daily communication between home and school, we keep track of his behavior, outings, meals, etc). He used it and did well picking snacks. More of the same over the next few school days. A few days later it was the weekend. He handed me, “Hotdog. Outside.” On his PECS sentence strip. I told him to wait for Daddy to get back from the Big Home Improvement store. The next thing I knew, Bugaboo fired up the speech app and input, “When are we eating? Raisins, cashews, cornchips, hotdog.”

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ZOMG Y’ALL.

Then there was, “I need help. Outside. Dogs.” Because Daisy was barking.

“I feel, tired, angry. When are we leaving? I want to go, Someplace different” When we were at the doctor.

“I feel, happy, shower.” When he wanted a shower.

“I’m hungry, I want, pizza, pizza, pizza, pizza, pizza…”

You get the picture, right? (SEE WHAT I DID THERE?)

Seriously. And this is just THE TRIAL. When we’re doing this full time? With more training? CAN YOU IMAGINE THE POSSIBILITIES? Because I can. We’re doing it, y’all. My boy is communicating. And while we have a looooong way to go before it’s effective and consistent, I already see a change in him for the better.

But be careful what you wish for, yo. Because you might just hear, “I want, nachos, nachos, nachos, nachos, nachos, when are we eating? I want, nachos, nachos, nachos, I feel, happy” for hours on end.

Beautiful to my ears.

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.

The Week That Was (The Least Awesomest)

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Some weeks I should just stay in bed.

Like weeks that start out with me getting locked out of the house? Yep. Bed. Covers over my head. Stay there for a few days. When it subsides, get out of bed. TADA! WINNING!

Except there’s that whole “I have to be a responsible adult” thing that’s totally cramping my style.

I’d like to forget yesterday ever happened. I woke up feeling kinda ooky. I had my baby nephew for the day so I was a tad busy and didn’t even realize why I felt ooky. Towards the end of the day I went into the bathroom and realized “ZOMG THIS IS WHY I FEEL SO OOKY.”  Because it huuuuuuurt to pee.

Yep. UTI. And naturally I didn’t realize it until after the doctor closed for the afternoon. So my choice was go to Urgent Care and sit FOR HOURS for them to say, “Yep!  UTI!” and hand me a script or drink a sh*t-ton of fluids, wait until the morning and call first thing to get an appointment. On a Friday. I have better chances of hitting the lottery. I don’t play the lottery.

Anywho. UTI. I suffered through dinner and a nighttime Home and School Meeting and got home hoping  to sit in a steaming hot bath for some relief and that’s when The Guy I Live With came downstairs to show me the Bugaboo’s ipad.

It looked like this:

Houston, we have a problem. A BIG EFFING PROBLEM.

Houston, we have a problem. A BIG EFFING PROBLEM.

You are looking at Bugaboo’s broken iPad. It still works (THANK YOU BABY JEBUS) but the screen has a teensy it of a crack to it. Ok, a lot.While I was at my meeting, Bugaboo took it up to bed. No biggy, right? Except The Guy I Live With went to check on him and found it like this. We THINK he tried to jam the button in too hard and ended up cracking the screen. At least that’s what it looks like. And before you say, “Otter Box!”  He has DESTROYED TWO OF THEM.  And they are no help for a broken button, yo. Just saying.

I figure that since three sh*tty things happened this week, we’re good, right? Right. Next week will be perfect.

(Except Bug Boy has been coming home every single day this week in tears. IT WAS THE WORST DAY EVERRRR because he is SO STRESSED OUT AND THERE’S TOO MUCH PRESSURE. Because he had speech and two music lessons in one day. And next week on his birthday he’ll miss four periods for practice for the winter concert next week. What kid COMPLAINS about missing class? My kid.That’s who. Oh, and he’s afraid of the new middle school violin teacher. Who is a sweet, sweet older woman.Only because he’s used to his old teacher of three years in elementary school. Sigh.)

(The good news is I got an appointment. Let’s hope they hook me up with some GOOD DRUGS)