What Autism Taught Me Today

This was a gloves-on emergency

2010-05-18T20:01:00.000-07:00

Another great part of my job is going on outings every day. This week, for instance, my calendar consists of playing on the playground and feeding the ducks at the park, checking out the new canopy walk at the Botanical Gardens, seeing a car exhibit at the museum, and going horseback riding.

Pretty great life, right?

Thing is, there is a TON of work that goes into making the outings happen and hopefully happen smoothly. With autism, you don't just say, "Hey kids! Let's go to the park!" and expect them to pile in the car with, "Sure Ms. Liz! I wanna play on the swings and slide and I'm gonna walk and hold your hand and not jump in the water or yell at babies or poo on the bench at all!"

Today's outing was the lovely canopy walk. Quite nice, actually! I'd really been looking forward to this one but was taking a very challenging combination of patients and was on high-alert for any problems. Problems? On an outing? Never! (insert sarcasm here) It was doomed from the beginning. . .

#1 Leaving over half an hour late. We never leave on time, that's to be expected. But half an hour? That's just too much. Nothing I can do about it now, onwards.

#2 Realizing I had no money. As I get the ticket in the parking deck, it occurs to me that I have no way to pay for parking. We get free tickets to the garden so that's not an issue, but how are we going to pay to get out? Nothing I can do about it now, push that one aside. Ok, we're rolling along pretty nicely now. The canopy is nice and shaded, it's beautiful and even has me thinking about going back sometime soon to fully enjoy it when I'm not busy trying to wrangle giant autistic teenage boys.

#3 Emergency! Ok, whose brilliant idea was it to put an emergency call button at the end of the awesome echo tunnel at the exact same level as the really fun texture tiles that the 18-year old loves to run his fingers on? Button gets pressed. Twice. In a panic I attempt to explain that there is no emergency and thankfully (?) no one shows up.

#4 Poo. Ohhhh, the fun part. There was an accident, there was running on my part, paper towels, gloves magically found by another staff, unhappy kid, a bathroom, not too thrilled me, an apology to garden employee, and finally leaving 30 minutes later with much MUCH handwashing and sanitizer upon our return to campus.*

#5 As if the poo wasn't enough, as we're leaving one of the other kids who doesn't like people to wear sunglasses tries to swipe a pair off of a strange lady's face. Awesome.

I manage to sweet-talk the parking lady into letting me come back later to pay (thank you, God, that I live so close now!) and we all ride back in relative silence trying not to breathe too deeply. And so ends what was one of the most memorable outings ever. On a more positive note, yesterday's trip to the park was pretty great and I'll write about that tomorrow.

*I originally wrote a much more detailed explanation of this incident but decided to spare you the details. It was not fun and I have a new-found respect for the unit staff that have to deal with that kind of thing on a daily basis.

Why the Harlem Globetrotters have helped me love my job even more

2010-03-18T20:28:00.000-07:00

When people ask me if I like my job, it's fun to be able to respond with a resounding, "Yes!" I've become one of those annoying people who loves what they do* and would talk about it all the time if they could, but I try to practice some self-restraint. Plus, as demanding as work often is, it's usually nice to not talk about it when I'm not there.

I wish desperately that I could post the video of my day today, but due to patient privacy laws, I can't. So I'm going to do my best to explain. We had a talent show! It's been in the works for weeks, all the other units (non-autism) have been planning and practicing and I was about at my wit's end trying to figure out what my kids would do. A choreographed dance was out of the question, a group song or skit wasn't going to happen. I toyed with the idea of an athletic exposition, in which each kid would show off one of their athletic skills. Finally, with some brainstorming help from the other RT's, I decided to introduce my guys as the LH Globetrotters! (LH being our hospital)

We worked out a routine that had 3 groups of guys passing a basketball, dribbling, shooting, walking and dribbling, making baskets, and generally wowing the crowd with skills most people didn't know they had. They even had red, white, and blue sweatbands, a bench on the sideline, and the Harlem Globetrotter music. It was a riot and the crowd loved it! I was so proud of them :)

My other unit, the younger kids, did end up doing a dance of sorts. I tried in vain to choreograph it with 2 groups standing and sitting but it ended up being a freestyle disco dance to YMCA with some instruments and lots of help from the awesome staff. The kids had tie-dye headbands and one girl who loves to dance got into it with her pompoms up in front of the crowd. So cute!

I just watched a news piece about Central State Hospital in Milledgeville. It's a modern hospital today, but when it opened in 1883 as the Georgia Lunatic Asylum, that's the kind of place my kids would have been sent to. Yes, even kids. Even though it's not an easy job and regularly frustrating, I feel so fortunate to work where I do and when I do and with the people I do. Just over 100 years ago, I wonder if the people running the asylum would have thought that kids like mine would be playing basketball and dancing in a talent show, then going out to dinner at Moe's afterwards?

*That's not to say I love every moment of work. Sometimes it just sucks. Trying to get 16 non-compliant kids to do what I want them to do is exhausting. Staff get tired, there are attitudes from everyone, resources aren't always there, time is extremely limited, demands and expectations are high. But in the big picture? The grand scheme of things? I have a pretty awesome job.

Staying In the Game

2010-01-08T08:11:00.000-08:00

Here in Atlanta, we get really nasty winter weather about twice a year and all go into a panic. This morning, I woke up to an iced over parking lot and nearly bit it when I went to check out the road. On the 4-lane road outside my complex, cars were attempting to drive up the hill, then backing down once they hit the shady spots and the ice. Friends and coworkers were fishtailing into work and getting in accidents and everyone on the news was saying stay home.

But the sun is shining. But there's black ice. But maybe I can make it into the hospital. But there's a lot of hilly roads and bridges I have to cross. But I have an outing scheduled with the kids. But all outing requests are being denied. But what does Facebook say? Twitter? Weather Channel? The news? Coworkers on the road? (That's how I heard about the fishtailing and the accidents). This is what I was dealing with for a good half hour this morning, trying to decide whether or not to risk my neck for my darlings.

And this is how I ultimately decided to stay at home for at least part of the day and catch up on some work reading. Today, it's Staying in the Game: Providing Social Opportunities for Children and Adolescents with Autism Spectrum Disorders and Other Developmental Disabilities by James Loomis. I've had trouble finding books aimed at working with children with low-functioning autism, so I'm hoping this one might give me some guidance and insight.

I'm taking my program in a whole new direction with the new year, much more focused on community reintegration and social skills and I'm very excited about it. Any suggestions of good reads or resources are welcome and would be much appreciated!

Update: Well, it seems to be another book that would be a great resource for higher functioning kids with autism and Aspergers who go to school, join clubs, go to church and scouts, and even go to slumber parties and camps. But not my kiddos. I'll keep reading though, because there are a few things I can probably pull out of it, but I do wish I could find something that is specifically for lower functioning kids.

Listen to Part 3 if nothing else...Temple Grandin

2010-01-03T17:04:00.000-08:00

Just listened to a great Independent Minds program on NPR about Temple Grandin, the animal scientist with autism who is also known for inventing the "hug machine." I turned in on about 10 minutes in, thinking, "well, I've heard lots of interviews with her, I pretty much know her story, this won't be that new," but I was pleasantly surprised. Maybe it helps that I now know autism more intimately than ever before or that the program delved a little deeper than just how she created humane cattle chutes and instead got into her mind and how she works.

The best part of the program though was Part 3, and if you click on the link above and only listen to one part, listen to Part 3. About the face of autism, what it is, why it's diagnosis is skyrocketing, explains the spectrum, varying symptoms and prognoses, possible origins, and how we really just.don't.know. There is supposed to be a script on the site soon and I'll post it here once it's available.

Working Christmas Isn't Half Bad

2009-12-25T19:32:00.000-08:00

There are no young kids in my family (the youngest cousin is 22 so she outgrew dolls and tea sets a few years ago), so I will admit that didn't put up a huge fuss when I learned that I would need to work on Christmas morning this year. It meant I would get to see my work kids (kiddos, kidoodles, babes, youguns, nutcases, crazyones, psychos, their names vary depending on my/their mood) see Santa and open presents.

I helped shop for all 18 of them a few weeks ago, and while it was an exhausting morning running up and down the aisles of Target with lists and gift cards in hand, picking out clothes and toys for the children that I've come to know over the last six months was such a joy. It was especially fun to find the toys for the ones who had been able to make their own lists and ask for specific things and I could picture their faces on Christmas morning when they opened their gifts.

Sure enough, when T. opened his gift bag this morning and found a sweatshirt, he proudly proclaimed that it was a GREEN sweatshirt, just like he'd asked for! Santa had gotten it right! And C. is so excited to have her very own MP3 player to listen to Disney songs on, D. loves the book of maps we picked out for him, J.'s got his own beanbag chair, and P. can bounce on his exercise ball whenever he wants (well, until he pops it). Sure, many of the kids are completely unaware that today is different from any other and that they've got a whole bag of new stuff just for them, but to enjoy a few moments with the ones that do get it, well, that was worth getting up at 6:30 for.

Ice cream: The great pacifier.

2009-10-16T18:21:00.001-07:00

I took two of my more difficult and aggressive kids on what I like to call a "Drive-By Outing" today.

Really, we load up the van and go through the drive-through at McDonald's for a Happy Meal, or like today, an ice cream sundae. We talked about the cars, the busses, the trucks, the bulldozers, the dogs, everything along the way, but what really got them excited was whenever we mentioned those two magic words, "ice cream." One got strawberry (I think that's what he wanted) and the other most definitely and emphatically wanted HOT FUDGE!! (my kind of kid) A good outing was had by all.

After a day like yesterday and week like this week, it was nice to end on a sugary sweet note.

Some days are just hard.

2009-10-15T20:46:00.000-07:00

Today was one of them.

It's hard to let go.

2009-10-13T19:29:00.001-07:00

One of the higher functioning teens I've worked with for the last 3 months moved to a different unit last night. It was the right move and he will undoubtedly grow and mature there more than he ever could have where he had been.

I saw him today with his new peers, and got a lump in my throat. Just surrounded by these new boys in his new environment, he looked so much more mature, like the teenager he is. I wanted so much to sit and talk to him and ask him how things were going, but it wasn't the right place or time. I waved as I walked out the door and had to blink back tears. Is that what it's like to watch a child grow up?

Always check your pockets before bed.

2009-10-12T21:18:00.000-07:00

Tonight I found sticky jellybeans I'd been carrying around as edible reinforcers. Some nights it's Lite Bright pegs. Other nights it's broken crayons, peeled paint, puzzle pieces, dice, laminated pictures for my picture schedules. My pockets are like those mystery grab bags you get at the fair, only much stickier.

Winning can put a smile on any child's face.

2009-10-01T06:09:00.000-07:00

It's been a busy week in my autism world! We went to the fair on Monday and I learned so much. A few of the kids won ribbons in the art contest and they were so excited! I also learned that sheep are soft, camels eat funny, and big slides and rides that make you feel sick are awesome.

After a week of rain, everyone needs a little fun.

2009-09-21T19:54:00.001-07:00

Especially staff, who I think enjoyed playing volleyball and making collages even more than the kids did today!

String Painting

2009-09-19T08:44:00.000-07:00

Here is a sampling of the artwork the kids created on Thursday. Some of them are going to be entered in a fair next week!

Food coloring can turn your skin green.

2009-09-18T21:23:00.000-07:00

Little known fact: In the English-Autism dictionary, "put in one drop," is translated as "squeeze the bottle as hard as you can and douse the Rec Therapist's hands in green dye."

Another little known fact? It doesn't wash off immediately, causing said Rec Therapist to somewhat resemble Elphaba for the rest of the night.

There's beauty in the mess.

2009-09-17T20:57:00.000-07:00

Even when things seem out of control and you're covered in paint and people are screaming and jumping and eating string and climbing on the tables, take a step back and look at what's been created. It just might take your breath away.

We did string art today, which resulted in an incredible mess and probably more paint was eaten and worn by the kids than actually got to the paper, but some of the results were pretty amazing. I'll try to post some pictures of them soon.

Sometimes it's just time to go.

2009-09-16T20:12:00.001-07:00

It might be earlier than you'd planned, but when you sense that the #^!@ is about to hit the fan, it's time.

Skittles are magical.

2009-09-15T20:44:00.000-07:00

Having trouble getting someone to do something? Give them a Skittle when they finally do it and, miraculously, they'll start doing what you ask! Just keep those Skittles coming.

Have a favorite tree and visit it often.

2009-09-05T15:22:00.000-07:00

Just make sure getting there doesn't involve running from well-meaning staff who would prefer that you stay in the gym for another 5 minutes. It's also best if you're wearing pants.

This picture, by the way, is of my favorite tree. It's in the middle of a huge field in Cades Cove and I'd like to be sitting under it right now. (Thanks to petergrantfineart for the beautiful picture!)

Soft things are fun to poke.

2009-09-04T20:53:00.000-07:00

This could include pillows, cushions, balls, mud, hamburger buns, stomachs, butts, or breasts.

[Disclaimer: I do not recommend trying the last three. Unless they're your own. But that's just weird.]

Dogs are exciting!!

2009-09-02T20:16:00.000-07:00

And when you see one, you should get everyone's attention and point it out because who knows how long it will be until you see another . . . ooh! Another dog! And another one! Look! Look! Dog! Look!!

Sometimes autism hurts.

2009-09-01T14:21:00.001-07:00

Especially when it comes in the form of a 14-year old boy tired of waiting.

Thoughts on Dateline's "A Dose of Controvery"

2009-08-30T20:11:00.000-07:00

Since I don't work (most) weekends, I've been trying to think up something clever to post on Saturdays or Sundays. Highlight of the week? An activity that worked especially well? A "what the heck is Recreation Therapy" FAQ? Something completely unrelated to autism or work?

For today, I think I'll post a brief reaction to tonight's Dateline "A Dose of Controversy," about the suggested link between the MMR vaccine and autism. I'll be the first to admit that I am not an autism expert. I didn't go into this field with the intention of working with people with autism but have landed there and seem to be good at it. I'm the type of person though who, when presented with something, takes it as it is and goes with it. With my kids at work, this means that rather than sit around and try and figure out why they are the way they are, I observe, see how they are and what might work with them, and run with that. (I would have made a terrible journalist, which was my first degree!)

That being said, the autism mystery is of some degree of fascination for me. What exactly is it, how did it come to be, what is the outlook for these kids' futures, and most of all, why are so many more kids being diagnosed with it these days than in the past? Over the last few years, I've heard the rumblings of the vaccine connection but didn't know much about it. Tonight's program gave me the background, and I felt it was pretty even-keeled in giving multiple sides of a dicey and emotional story.

After listening to him, my initial reaction of Dr. Wakefield is that he's full of it. His research methods were sketchy to begin with (only 12 test subjects? drawing blood at a birthday party?) and there was definitely some conflict of interest involved. Plus, I almost fear that he's done more harm than good as parents are starting to NOT get their kids vaccinated because of the way his research results were presented and they completely misunderstood what he was trying to say. However, I can see the validity of his argument and hypothesis, the importance of his research, and I think he's on the right track. Research needs to be done, whether results are positive or negative. Again though, he should have been more careful about was how the public interpreted his findings.

Right, so do I think there is a connection? Maybe. Probably not though. Someone recently (I can't remember who) suggested that there may be a genetic predisposition to autism (and research currently seems to be pointing that direction) and that the vaccine simply served as a catalyst for the symptoms to appear more quickly and more severely. In other words, the child had autism already, but the symptoms may not have been as evident until later, say 18 or 24 months. I do know that a lot of the kids I work with were developing normally and then around a year or a little older, started to regress. Take that as you will.

But you know what? I don't know. People regularly ask me what causes autism, and it's nice to be able to answer, "We don't know . . . yet." I certainly hope we learn the answer in my lifetime though.

For more on this and on autism in general, from people who really are experts, check out these sites:
Dateline's Related Materials (Includes videos and a very helpful statement from the CDC)
Autism Speaks
Autism Research Institute (Which seems to lean towards seeing vaccines as a trigger)
Autism Society of America (Seems to have a lot of good resources, just now delving into it)

Stuck? The next step will appear eventually.

2009-08-28T20:39:00.000-07:00

Just stand there until someone puts it in your path.

This was inspired by a rather amusing display of human Lemmings (the game) tonight. I set up some aerobic steps for the kids to walk up and down and they started walking up them before I'd finished the down side. They just kept walking up and piling on the steps, unable to turn around because other kids were behind them, and I guess stepping off the side never occurred to them. I finally got the rest of the steps set up and it was like the flood gates opened as they all came pouring down the other side.

Everyone has a wash rag in easy reach at all times.

2009-08-27T22:42:00.000-07:00

It's called your shirt, and it's perfect for spaghetti sauce, finger paint, mud, orange juice, and other unmentionables.