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.
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.”
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.
Hi! Did you miss me? My mid-life crisis is over and I dyed my hair back to orange, wanna see?
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.
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.
Day after day I sit here staring at the screen and I write nothing. Or actually, I type nothing, since you couldn’t pay me to write stuff by hand (fine motor issues much?). It’s not for lack of wanting to. It isn’t a lack of trying. Time management? Not my strongest skill but I could honestly find five minutes to slap SOMETHING together. Anything. Heck, I blog about my toenail color. And I do interpretive dances. And yet tens of you still come back everyday!
It’s not like there’s a lack of content in my life. I could blog about my floors (or lack thereof), my dogs (Daisy gained NINE POUNDS. Time for doggy Jenny Craig!) or my backyard (this rain sucks. You can guess what my not-really-floors look like.)
Or my recent roof issues.
Or Bugaboo having the best handstand in his gymnastics class (with typical peers, by the way.)
Or Bug Boy making the honor roll again and crying over a B+ because he is his mother’s child and puts a ridiculous amount of pressure on himself to live up to ridiculous self-expectations.(hmmmmmm sounds familiar?)
And there’s more. So much more. So much more I could share so much more I cannot share. And THAT is the problem. There’s so much I am overwhelmed. In every aspect of my life. I’m in full-fledged survival mode, getting the basics done each day and everything else over and above is gravy. If the clothes are clean, the house is somewhat tidy and there’s food on the table I consider it a successful day.
This is where I admit that Ive been taking care of everyone else and there’s no time left over for me. And yes, I’m aware I need to take care of myself. But trust me when I say there’s been a level of sh*t hitting the fan like no other and there ain’t no way it’s gonna happen.
I’m making small efforts here and there. I finally made a hair appointment (six months later) and got the PT evaluation in so I can start PT next week and get my back healed and in shape. Someone has to keep up with Bugaboo! It’s like running a marathon, but more strenuous. I plan on calling the psych today for an adjustment in my meds (S.A.D. for the win!) and I’ve been spending more time walking and stretching. I’m getting there.
And I’ve gotten the boys squared away. No more broken bones! Things seem to be going back to normal. Well, you know, as normal as it gets here. We did opt to add an ADHD med back in for the Bugaboo because, well, it’s spring and he’s pretty restless and Elopement Season is in high gear right now. We’re shooting for NO CALLS to the police this year. I think that’s attainable, no?
So, dear reader(s), I’m trying. I’ll attempt to get something on this here blog once in a while. Maybe a pop quiz or a reader participation post. Perhaps you can help me pick wall colors or look at pictures of my dogs. In any event, IMA TRY.
In the meanwhile, this is the extent of my midlife crisis right here:
When life hands you lemons, don’t make lemonade. Make mashed potatoes because they taste better. – DG
Ah life. I love lemons, really. The smell is divine to me and I like a slice or two in my water because I like the taste and it’s all refined and lady-like and stuff. And we all know I AM A REFINED LADY. Stop laughing, ho.
Anywho, lemons, lemons, lemons. Bushels and bushels of them. And I can’t slice open the lemons and show them all to you. Not all of them, anyway. Well, most of them. Suffice to say we are in survival mode and we’ve been stuck there for weeks. In some ways months and years. Many years. Twenty, really. And these lemons, well, they plague us. And come back to haunt us. Bushels of them in my dreams. And I’d really like to exclaim, “LOOK, LIFE, I’M F*CKING SICK OF LEMONS, MMKAY?”
As a “disgustingly optimistic person” who annoys the crap out of my peeps with my Pollyanna-Sunshine-and-rainbows-silver-linings outlook on life, I suppose this is when I say, “Just cut open the lemons and rub them on your elbows! Gets rid of the dead skin and makes your elbows look all purty like! You know, if these were REAL, LIVE lemons and not hypothetical lemons used as a metaphor.
But truth be told? Right now my emotional banks are a wee bit depleted. I grow weary of being the person who holds all of the sh*t together around here. The littlest things are zapping me right now. And I know it isn’t the little stuff that’s the problem. No, it’s the big stuff, really. And the big stuff takes SO MUCH ENERGY and so much of my emotional fortitude that the little stuff? I can barely handle it.
Hence the survival mode.
And worse yet, I can’t really elaborate on everything going on. To anyone. Because it’s not my story to tell. But it’s weighing heavily on my mind and suffice to say I’ve had sleepless nights and we all know I need a few less of those around here, eh?
So I just suck it up, put on my big girl panties and deal with it. Like I always have. And I keep it all together, because that’s my job. And it’s a BIG EFFING JOB but someone has to do it, right? I just wish once…just once…I could be the one that someone else is taking care of. I get to be the one tucked into bed, pampered, fed, massaged, the house kept quiet for. I may sound a little resentful but that’s not my intent. More like…weary. Tired. In need of a break.
Fortunately one of our FABULOUS WEEKEND GETAWAYS is planned in a few weeks. Can’t even begin to tell you how much I need it.
But until then, I carry on, like always. Because these human-types need me to do that. And the canine-types, too. And I’m rewarded with hugs and smiles and cuddles and happy humans and puppies. And that gets me through.
After three weeks of Aitch-EE-Double-Hockey-Sticks, Bugaboo had his cast removed. Honestly? He did so super well with it I was shocked. The first few days he handed us every pair of scissors and every butter knife he could find, in an effort to get us to remove is. When that didn’t work he took to attempting to saw it off himself.
I’m sure it was uncomfortable. Casts suck. But after three days he figured out to hold his arm up at just the right angle in order to promote his spinning (he LOVES standing under a ceiling fan and spinning with it!). He learned to sleep with the arm outside the blankets so he didn’t whack himself in the head with it. And although it was FILTHY by the time it was taken off (holy cow, did it stink), he learned to use the arm with the cast to pick things up, move things, eat, play on his iPad and more. I’m quite proud of him, really.
And when they took it off? He was LIKE A BOSS. Didn’t even budge. Of course, the sedation helped. Ahem. But we walked out of there and he was practically skipping in the halls of DuPont. It took him a few hours to realize, “Oh. Yeah! I forgot! I don’t have to keep this arm at a 90 degree angle anymore and I can use it!” He’s left handed and tends to use his left for everything so it didn’t even occur to him he could use his right arm again. And he spent three weeks perfecting the art of the one-armed headstand! Nothing keeps this kid down, that’s for certain. Even when he had the flu last week he’d get up, do a headstand, jump over the knee wall and then collapse on the couch for a few hours. Then get back up, vault over the hassock and park himself on the other side of the couch. Even sick he can’t sit still.
Now I have to keep him from re-breaking his elbow for a few weeks until we’re out of the danger zone. Wish me luck, this will be no easy feat.
