Pranks and Autism

Posted on April 30, 2013 by simpleijustdo

The Boy has had an increased interest in pranks lately, and has even gone so far as to persuade Grammy to purchase the old snakes-in-the-peanut-brittle prank from a joke shop for him. She did, and brought it with her when they came to visit, and it was a big hit, at least with The Boy. The rest of us quickly tired of trying to smush the “snakes” back in the can. After a day or two, the novelty wore off a bit, and we were off the hook.

At school, The Boy chose a different prank. An old-school prank that could actually hurt people: the old tack-on-the-teacher’s-chair prank. And in a roundabout fashion, his ASD teacher discovered that The Boy was the culprit.

She handled it magnificently, understanding that at the root of this was his autistic self not understanding that the prank can be funny in cartoons, but could actually hurt people, and is so not cool or funny. They discussed it, she told him she would keep his secret, and resolved to keep an eye on him, hoping that the talk did the trick.

And then he was caught being sneaky again.

He wasn’t doing the prank again, but he asked to get a drink and she followed him. And he made several stops in vacant classrooms and hallways where he should not have been. And he got busted. He was unhappy, but she told him that she couldn’t trust him at his word anymore. He values his independence so keenly, but that was what had to be taken away because of his actions. They developed a plan to earn it back, and he will have to have supervision at the beginning of this week when he leaves the room, then the supervision will be gradually lessened until he earns his independence back at the end of the week, IF he has complied with the terms of the agreement: going only where he’s supposed to, no pranks, no sneaking, no meltdowns about the rules.

He’s learning – this is foreign territory and I am so thankful that he has a teacher that gets that this is an autism/social cue thing rather than a disciplinary issue.

All that’s left is encouragement that he can do this, he can earn his independence back, and hope that he learns from this experience!

A Wonderful Night

Posted on April 26, 2013 by simpleijustdo

We had another concert tonight, and The Boy performed was excited, performed well, and made us proud. I didn’t have to ask more than once for him to get dressed when it was time to go, he lugged his baritone out to the car without being asked, and had no problems once he was dropped off with his classmates in the designated room. When it came time to perform, he went to his spot, and played well, often without having to look at the music (how does he do that??). He maintained his composure during a piece where some of the other kids in the band had to stomp and scream (although he was struggling not to collapse into a fit of giggles), and was proud to stand for pictures after with his grandparents. Then we went for dinner at one of our favorite restaurants, and he shared his brownie sundae for dessert.

A non-routine evening is often great fodder for a meltdown, or at the very least, is a source of anxiety, but tonight was pure excitement, joy, pride, and satisfaction.

And since this type of night is my kinda thing, I’m an extra-proud mama tonight.

I Wanted to Sing from Here

Posted on April 25, 2013 by simpleijustdo

Last night was The Boy’s Choir concert. This is his second year in the choir, and he has been less enthusiastic recently, I think in part because the time of the rehearsals changed to before school, and he would have to miss Kids Club. Also, his voice is changing dramatically. He has been missing so many rehearsals, I had emailed his teacher thinking he wasn’t going to participate in the concert. But she assured me that he was expected, and they would love to have him there, so I made sure he was ready to the best of my ability.

These concerts, from a parent’s perspective, can be challenging. In our community, parents are hyper-involved. To the point that you want to tell them all to just go home. The first day of school is absolutely chaotic, because every parent wants to escort their child from the parking lot to the door of their classroom. When you have 800 elementary school students, and at least two family member accompanying them, you can imagine the scene, and hopefully you can understand my eye roll.

Concerts are no different, except there’s a twist. Not only do both parents come, but the entire extended family comes, complete with expensive florist bouquets for their little star. And they save seats. What are we, in second grade ourselves, at the lunch table? And not just one or two seats. The family in front of us last night had seven seats “saved”, and turned away several families looking for seats. There have been several years when I had to stand because I wasn’t going to haggle for a place to sit.

In any case, it can be tense, and it can be difficult to enjoy. But this year was an exception. We went early, made sure we had a parking spot and didn’t need to hike six blocks to the school. We got good seats, got The Boy settled with his classmates after walking the halls for quite awhile until there was adult supervision in his room, and were ready for the show to start, feeling apprehensive about the screaming babies, and the seat-savers, and the woman with extremely big hair in front of us.

The choir was first, and they were great. I don’t think they’ve had such a big choir in a long time. The Boy sang, and fit right in for the first two songs. And then the third tune came, complete with all kinds of “moves”. And of course, The Boy didn’t have much of a clue because he hasn’t been to rehearsal. But it turned out to be adorable and funny, and just the type of thing we could expect from him. All the kids would turn around, and he was the only one facing front, and he’s not hard to spot in a crowd of fifth graders because he’s taller than 99% of them! But rather than be embarrassed, we laughed because it was so him, and I was proud that he wanted to be with his friends and participate.

The rest of the grades were cute (how can you not enjoy a bunch of kindergartners singing??), and then all the kids came back in for the finale. Just before the (planned) encore, The Boy slipped away from his classmates, and zipped across the front of the auditorium. My mom nudged me, and before I had time to panic, he was making his way down our row, heading for the empty seat next to me. He sat down and explained, “I wanted to sing this one from here!” and I couldn’t have a problem with that. He did sing, and it was really cool to hear him up close. It may not have been typical, but so what? I’m a proud mama anyway.

Jobs and Autism

Posted on April 24, 2013 by simpleijustdo

I posted a story on the Simple. I Just Do facebook page yesterday about a carwash in Florida that was developed to run entirely with autistic employees, (and was started by a family with an autistic son, no less). And I encountered a staggering statistic – an unemployment rate of 90% for those with autism.

Food Barn pin from first paycheck job. / c. 1989 - Nate Hofer

Food Barn Pin – Nate Hofer

That is a very scary number.

The article by Doreen Hemlock of the Broward County Sun-Sentinel quoted Michael Alessandri, director of the University of Miami-Nova Southeastern University Center for Autism and Related Diseases, as saying, “Most people with autism can work. They can be very successful when given the right support. There just aren’t enough job opportunities with the right support system.”

The Man and I have discussed starting our own business a great deal. Part of that, I think a large part of it, is that if we are the owners, we can create our own opportunities for The Boy to be employed. And just like many, many families with autistic kids are turning to homeschooling so that they can tailor their child’s education according to his/her individualized needs, I think many, many families have or will turn to entrepreneurship for the same reason.

I love it.

I am so inspired by all of this. The world isn’t ready for this influx of people with autism? Well, let’s make it ready, one kid, one family, one family-owned business at a time. Bring it.

Don’t Knock Awareness

Posted on April 23, 2013 by simpleijustdo

I keep seeing facebook and blog posts, and tweets stating that awareness is just not enough.

Of course awareness is not enough. Acceptance would be lovely, access to therapies, respite care and services would be grand, assurances that my child will be cared for after I am gone would be divine. And of course, those of us who have the energy will continue our fight for these basic needs (and yes, they are basic needs, as any family touched by autism can attest).

But, we can’t do it alone. We need armies of people to help us demand that these basic needs be met. And we don’t have armies, yet. We can’t even get our own rag-tag assemblage to march under the same banner — we can’t even decide what our banner should say!

So I say we continue with awareness, and not just some event with a puzzle piece on a poster that says “Autism Awareness Night”. Puzzle pieces, posters, literature, and every autism family in a 50 mile radius in attendance, so those NT attendees can glimpse the spectrum in all its glory: the sweet smiles, the small victories, the hand-flapping, the meltdowns — all of it. We cannot rely on large national nonprofits to do the work for us. We have to get our kids out there. We have to make our presence the norm. We have to be unapologetic. We have to use every teachable moment.

Doing all of that creates awareness. And awareness is where armies are born.

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…

No Need to be Nasty

Posted on April 18, 2013 by simpleijustdo

Waiting Room by Melissa Venable

The camp that I’d like to send The Boy to this summer, in lieu of ESY has an 11 page application, part of which must be filled out by his physician. We were just at his doctor’s office last week, getting his booster, but when I approached the desk to ask about getting this filled out, no one seemed interested in helping me, and rather than stand there like an idiot, I decided to leave and call about it later. I called today, and politely explained to the woman on the other end of the phone that I needed to get this paperwork filled out by May 10. She responded that the doctors in the practice didn’t “just do that”, meaning fill out paperwork for camps and such, and that we would have to have a physical. I expected this, and when she asked when his last physical was, I told her August, and she then replied that he would have to wait until a year after that physical, and went to disconnect the phone! I raised my voice slightly, explaining that we were moving in June, so waiting until August was an impossibility, and that I had spoken to someone in her office who had said that it depended on our insurance when another physical could be done. I assured her that we were in the clear according to our insurance, and could we schedule a later appointment for this, due to my son having autism, and hating to miss school? She grudgingly offered up a 3:30 appointment in May, and I asked if there was anything later in the day, as The Boy is still in school at that time. She responded that that was the latest appointment she had before our deadline, adding that the late appointments fill up fast because everyone wants them after school.

I shouldn’t have to fight for an appointment! I shouldn’t have to raise my voice to get the service that I need! If you would like my son to be having a meltdown when he comes for his physical, than by all means, continue to be flippant with me about how everyone wants late appointments!

This is not the first time I have had issue with the office staff in this practice. Two summers ago, I was running a summer camp, and couldn’t leave until the last camper had been picked up. Of course, I had The Boy with me because we had an appointment scheduled about 30 minutes after camp was over. Unfortunately, the parent of this camper was extremely late. I called the office after he had finally been picked up, and explained that I would be 10 or 15 minutes late, knowing that usually one waits at least 45 minutes to see an actual doctor. The staff member proceeded to lecture me about being late, and that they would have to cancel my appointment. I pressed the issue, saying that we would be right there, and couldn’t we just keep our appointment time, and she lectured me again about being responsible about keeping appointment times, refusing to see us. I swore I wouldn’t go back, but when you have a child with special needs, finding a doctor who understands your child’s background is essential, and you often have to make compromises.

I can remember loving the dentist I had as a child, and hating his office staff and his dental hygienists with a passion. And we actually did leave the practice of The Boy’s first dentist because they couldn’t be flexible with appointment times.

Don’t these people understand that they drive people away when they treat them this way? They create anxiety in the patient, and they create mistrust with the patient’s caregiver, namely me! And in these days and times of social media, consumers have no compunction about telling all and sundry about their experiences with your business, especially if they were negative. I just don’t understand how they get away with it, and I’m glad I won’t have to be dealing with this particular office staff again!

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.