The Show Must Go On (Without Us)…

Posted on April 22, 2013 by simpleijustdo

The Stage by Luminitsa

My parents are in town for a bit, for The Boy’s choir and band concerts this week (and also because they haven’t seen him since Thanksgiving and were missing him big-time!), and we went to a musical put on by the district in which I work. The Boy even dressed up in his dress-up clothes to attend. We arrived, purchased our tickets, as well as flowers for PITA, who runs the show, and finally raffle tickets for some baskets of goodies. We found our seats, and enjoyed the first half. At intermission, The Boy and I got up to stretch, and buy a small treat. We purchased our M&Ms, walked around the lobby while we ate them, and returned to our seats.

Before the end of the intermission, they did the drawings for the raffle baskets, and that’s when things started going wonky. Remember that The Boy has only had a few experiences with raffle baskets, and luckily for him at the time (but not so luckily for us at it turns out), he has won virtually everything he has attempted to win.

But today, we didn’t win.

And even though I had prepared him for this possibility (taking pictures of the baskets, assuring him that we could always purchase the contents on our own), he began to melt. And we had to leave. Luckily, I was prepared for this, and had even scoped out how far we were from the aisle, making sure we wouldn’t cause too much disturbance if we had to leave. I have learned from past mistakes, it seems (why is it always at a play??).

The Boy is still upset, wanting to have a “funeral for our luck” – clever even while not comprehending the larger concepts, here. And he will probably be in a funk for a little while.

So while we had planned to go to the show and then for dinner afterwards, we’re all quickly shifting to plan B. Thank God for take-out!

Baby Steps to Adulthood

Posted on April 21, 2013 by simpleijustdo

Tonight, I had everything prepped for Hummus-Crusted Chicken, went into the fridge to get the hummus, and… no hummus. How can you salvage that recipe? Um, you can’t. I know I bought some on the previous grocery trip, but somewhere along the line, the hummus jumped ship. So what to do? I needed to run to the store.

I offered to The Boy the option of staying home, as I have a few times before. He has always said no, a little afraid of the responsibility, and convinced he isn’t old enough. But tonight, he was contentedly watching Spongebob videos, and responded that, yes, he would like to stay home, while I took five minutes to run to the store and back. I reminded him that he could face-time me from his iPad if he needed anything, and I took off.

The whole time, I felt like I had a weight on my chest, but I drove carefully, moved quickly and efficiently into and out of the store, and face-timed him on the way home. “How ya doin’?”

“Fine.”

“What’re ya doin’?”

“Watching Spongebob.”

“I’m on my way home.”

“OK, Mom.”

“See you in a minute!”

“OK, see you in a minute.”

“Bye!”

“Bye, Mom.”

And a minute later I was home. “Are you home?” he said when he heard me come in the door. I responded in the affirmative, told him how proud I was of him for being so mature and responsible, and he was visibly excited and proud of himself.

Will I be taking off by myself to the movies anytime soon? Hell no.

But this is a proud mama moment for me. This is a baby step toward adulthood for my little man.

I Hate that Sound…

Posted on April 20, 2013 by simpleijustdo

frustration by Sean MacEntee

One of the worst sounds to my ears is the sound of The Boy expressing frustration. Partly because, if left unchecked, it could lead to a meltdown, or perseveration on some negative thing. But mostly because he is 11, and I have tried and tried for years to teach him to ask for help when he gets frustrated, and instead he continues to do this thing… This “ARGGHHHH!” thing, to which I think I am supposed to come running and solve his problem. Or the extremely loud self-talk that sometimes accompanies it (but which I can’t understand, because it is often coming from the basement). I don’t ever respond, except to say, “Do you need help?” I rarely get a response, just more “ARGGGGHHHH!” and indistinguishable self-talk. Beyond that question, I do not respond, knowing that if I do, he will learn that I will try to anticipate his every need, and instead, I want him to learn to communicate his needs and ask for help, even when frustrated.

And so, I will wait him out, turning on some music to drown out the “ARGGGGGHHHH!” until he comes to me of his own accord, or gets interested in something else.

But that noise is just about the worst…

The Cat’s New Tail

Posted on April 17, 2013 by simpleijustdo

The Boy has a cold, and you know what happens when you mix autism and illness… let’s just say hilarity does not ensue. Cranky-pants, constant-verge-of-meltdown ensues, and it ain’t pretty. And from what I can tell, school was no different from home today. So when we arrived home today, he put on his “cat costume” (which isn’t really a cat costume, but more of an everything-plaid ensemble, because according to The Boy, that makes him look like a calico… okaayyyy…) and went outside, because it was rather warm today (and sunny!). The last detail of the cat costume is the scarf (tail) he and The Man bought me for my birthday a couple of years ago, but today, the scarf had other ideas about being dragged on the concrete. It turned into a frayed mess, and The Boy began to wail because it was “broken”.

We went back and forth, me trying to calm him and offer solutions, and The Boy calling me names and dwelling on the negative.

I have found over the past few months, that when The Boy is at his most frustrating and meanest point, he will often welcome a hug, and crawl into my arms (well most of him), and cry like a baby. That’s what this behavior all boils down to, folks. It’s an expression of his feelings. He doesn’t really mean that he would like a new and better mom, he just means, “I’m sad and mad and frustrated, and I want to cry”!

While he was in my arms, I started suggesting alternatives to the scarf. Rather than try another fabric scarf (which is what he wanted to do), we needed something different, something tougher that would withstand the concrete, because fabric and concrete just don’t get along. He attempted to get sidetracked with, “Why do concrete and fabric not get along?”, but I motored right past, thinking aloud about something vinyl or plastic, like an outdoor tablecloth… I suggested we go to the fabric store to see what they had. I then had to explain that fabric stores had all kinds of materials and not just fabric (because I think I really confused him after just telling him that fabric and concrete didn’t get along!). As soon as he understood what I was getting at, he wanted to go immediately, all full of hope and smiles.

We were able to find a plaid outdoor tablecloth material for $3 a yard, and came home triumphant. I offered to sew it up for him, so that the soft side wouldn’t be exposed, and he enthusiastically agreed. I broke out my new IKEA sewing machine for the first time, reached way back into my memory banks to remember how to set it up, and was able to do what I had promised.

And now our “cat” has a new tail!

This is a day in the life, and this kind of turnaround is what I live for.

Poppy’s Advice

Posted on April 13, 2013 by simpleijustdo

Hypodermic Needle Pen by Virany

Today, The Boy had to get his first shot in a long while. I know there isn’t a kid on Earth who likes getting shots, but the thought of getting a “poke” sets my kid on edge as soon as he knows about it. This time, he was so anxious, he created a fictional story about having to go to OT in a nearby city as the reason why I had to pick him up a bit early from school today, instead of the reality of going to his doctor’s office for a booster shot. In fact, every time we go to the doctor, his first question is, “Do I have to get a shot?”

I have been prepping him since October for this one, and when we’ve talked about it, I offered him the advice my needle-shy dad always gave me for getting through a shot: “Think of something else!” I also shared with The Boy that Poppy always thinks of Mickey Mouse when he got his shots (or gets blood drawn), and so I usually think of Mickey Mouse, too!

The Boy was anxious as we waited for the nurse, but I reminded him to just think of something else, like Sonic or Steam Boat Willie, and it would be over so quick he wouldn’t believe it. He ended up getting two pokes, one in each arm, but he squeezed his eyes shut, thought of something else, and looked so brave and adult, I almost got teary.

Afterwards, we went and got ice cream (even though it’s only in the 40s), and stopped at our favorite little toy shop and picked up a small airplane he had had his eye on. Even with the pokes, it was a Fun Friday. And I was so proud of my little man (and so geeked my dad’s advice has stood the test of time)!

Can I Have Another Vacation Please?

Posted on April 10, 2013 by simpleijustdo

Two days back to the routine, and I’m under water. We had a rough morning, Boy-wise, in part because I had a stressful evening, and failed to make sure he was all set for our morning routine. Sure enough, the one pair of pants he wanted to wear today got left at dad’s, which resulted in a near-meltdown, resulting in being later than usual to school, and a second near meltdown… I was toast before we even got to 7:30am.

And stressful things kept popping up at a maddening and unusual rate today. Now I am finally home, and having to drown out the meowing with my iTunes (his obsession since Christmas has been cats, and even “dressing up” and acting like one)… gradually turning it up every couple of minutes as he gets louder. Pretty soon I’ll need to put the noise cancelling headphones on…

Deep breath, think of positives:

I got back on the bike this morning, after being out of my workout routine for about a week and half
It’s really difficult to hang on to stress while listening to Here Comes the Sun by The Beatles
The near meltdowns of the morning didn’t bleed into The Boy’s school day
Tortellini soup for dinner tonight

Time for High Gear: We Really Are Moving

Posted on April 8, 2013 by simpleijustdo

We have 10 weeks to go before the big move, and it feels like we’re out of time. We have prepped The Boy, and he has shown increasing acceptance, although he still talks about cloning himself, so that various copies can attend all the middle schools in our area, and one can even play video games all day and visit his current ASD teacher after school. I don’t disabuse him of these fanciful notions, choosing instead to concentrate on the realistic, and I am getting a strong urge to kick it up a notch with this approach. I picked The Boy up from his dad today, and began talking about the changes to come, reminding him of everything we had talked about with the moving process. At first, all seemed OK, and then he began to fret about last spring break.

Part of his autism includes never forgetting things that have upset him, which are usually times he has missed school for various reasons. Luckily he does not get ill often, but there have been times over the years when he has either had to stay home from school or be picked up due to illness (I learned early on never to make appointments for the doctor or dentist that interfered with school, because I would never hear the end of it). Last spring break, I had to make an agonizing decision about pulling The Boy out of school for a week so that I could have a vacation. Our breaks did not coincide, and not pulling him out meant I would get no break at all. It may sound selfish, but I am firmly in the camp that believes that if Mama ain’t happy, ain’t nobody happy, and therefore I decided to pull him out. I also chose not to tell him that he would be missing school. Honesty is usually the best policy, but if you don’t have to step in manure, than why would you choose to? Unfortunately, a parapro let it slip a few days before that he would, indeed, be missing school, and that was just about the worst thing that could happen. It was as close to the end of the world as it could get for The Boy, and on top of it all, I had “lied” to him.

Needless to say, with the memory he has, especially for tragic events, this has come back to haunt us a time or two, as it did today. The Boy was in tears about something that had happened a year ago, and it is one of those things about autism I have a hard time wrapping my brain around.

We talked about how it was in the past, couldn’t be changed, and how we had to move on from that. I promised it would never happen again, and he launched into his next set of fears, having to give away all of his toys, because he is “skipping middle and high school, and going to college”, like Andy from Toy Story 3. We have talked about how we will be purging some toys before the move, and this is how he interprets it. So we talked about part of growing up is outgrowing things like baby toys and baby clothes, and that once you learn what those toys have to teach you, they are much more suited to younger children. I reassured him we weren’t throwing toys away (a constant fear, again, thanks to Toy Story 3), but donating them so that 3rd graders could play with his 3rd grade toys, and so on. This idea of outgrowing clothes and toys seemed to make more sense to him, and he quieted, thinking about everything I had said. After a while, his tears turned to smiles, and we were back on track.

Pick a color, pick a side

Posted on April 2, 2013 by simpleijustdo

Some autism parents are clearly “against” Autism Speaks. They think raising awareness isn’t enough. They think their executive directors make too much money. They think they diminish the people they claim to help with their language. And they think Autism Speaks should do more to help individual families.

The thing is, Autism Speaks has raised awareness at a national level, much more than a local group could hope to do. And because they take in and disburse so much money, their executives make a hefty salary, but not more than similarly structured nonprofits. And they have funded an incredible amount of research. I do agree that they should drop the word “epidemic”, but I am not going to advise others that they should stop supporting the group entirely.

I have no problem lighting it up blue. I do have a problem with people making others feel bad about supporting the group. If you expect a national group to provide services at a local level, you are expecting a lot. There are lots of local groups that do provide services to families, and you can support this great diversity of nonprofits that help on all levels. You don’t have to pick a side.

Happy National Autism Awareness Day!

Self Advocacy via PowerPoint

Posted on March 23, 2013 by simpleijustdo

The Boy has a love affair with PowerPoint. He could whip one up faster than just about anyone, and it would be engaging (if you were interested in Sonic the Hedgehog or Mario and Luigi), and you would say, “An 11 year old made that?” In fact, I had no sitter during an evening school event the other night, so I set The Boy up in a quiet office space with my computer and PowerPoint primed and ready to go. Not only was he self-sufficient the whole time I was occupied, he wasn’t ready to go when I was done because he wasn’t finished.

Our kids (those with autism) have so many fascinations, that those of you with kids on the spectrum are saying, “Yeah, so??” because your own kids have talents and abilities, and often they don’t seem to have any real purpose, right?

This past week, I got The Boy’s report card (pretty stellar, besides the “need improvement” in doing homework part – haha!), and his IEP progress report (again pretty awesome), and had parent teacher conferences with both his ASD and general ed teachers. And I was made aware that The Boy’s writing has developed by leaps and bounds this year. Writing is difficult for kids on the spectrum, because they have a hard time creating and voicing new ideas. For example, when asked to give characters a name (even back when we bought a Webkinz!), he becomes almost paralyzed until you suggest something, and then he will automatically agree to whatever name you suggest. Creating new ideas is hard. Also, staying on topic is hard. But The Boy is doing extremely well, and even developing his own “voice” in his writing, which is something that even NT kids (and adults) have a hard time with! (I am SO excited about this, being a writer-type myself.)

In any case, here’s the point of my rambling, the “why” of this whole thing: The Boy used PowerPoint to help himself become a better writer. He developed his own graphic organizer using PowerPoint to help him with paragraph structure, and uses it daily to write his journal. He doesn’t need to be asked, and he didn’t get any help. And it is working. And I am so incredibly proud of my self-advocate.

The St. Patrick’s Day “hat”…

Posted on March 17, 2013 by simpleijustdo

My son remembers just about everything.

A couple of years ago, he made Fabulous Babysitter buy him a St. Pat’s-themed head band with orange pigtails that got some pretty strange looks when he wore it. He was oblivious, of course, but the rest of us weren’t. This is one of the tough parts of being an autism parent (or caregiver, or teacher). We don’t want to deny them anything that makes them happy (at least nothing as benign as this), but we also don’t want them to be targets for the less compassionate public at large.

A few years ago, it was a beanie (complete with propeller!) that The Boy had found around Halloween at a costume store. Harmless, right? Until I got the note home from his teacher that he was being teased, and could we please keep it at home…

And part of me screamed, “No! Let’s concentrate on the teasers and not the one being teased!” while the other part said, “Oh, for sure. I so get it.”

Fabulous Babysitter took The Boy out on Fun Friday, and he wanted to get some St. Patrick’s day “stuff”, and he dragged her from place to place (although she would never call it that), until he remembered the exact store they had purchased the pigtail-headband the last time. And they purchased it again. And again, we ask ourselves – is it better to let him be himself, or help him to assimilate?