Friday Link Share — July 15

The following links are articles, blog posts, and other Internet tidbits that I’ve found particularly interesting in the past week.

Don’t Laugh At Me: A powerful, painful, important blog post about autism, sensory meltdowns, and the fact that we have a long, long way to go before acceptance is the norm. This post does a great job of explaining the difference between a tantrum and a sensory meltdown, two things that can look fairly similar to an unfamiliar eye but are vastly different from one another. And once you’ve read that, check out…

So Then, What Should I Do?: The follow-up to “Don’t Laugh At Me,” with a great list of suggestions for how to respond if you see a parent trying to manage their child’s sensory meltdown in public. I found the advice in this post to be extremely practical and very useful.

What To Say To Parents of Children With Autism: Similar to the above link, this article discusses helpful (and not so helpful) things to say when you find out that someone’s child has autism. Not being a parent myself, I can’t speak for how “right” the article’s advice is, but it seemed pretty solid to me.

Wallgreens’ Program Puts the ‘Able’ in Disabled: Although I found the title of this article a bit off-putting, the content was excellent– Wallgreens has created a distribution center that they plan to staff where at least 33% of the employees have some form of cognitive or physical disability (and, as of the writing of the article, 42% of the currently hired employees have some form of disability). It’s great to see a big name company actively recruiting individuals with disabilities, focusing on these individuals’ strengths rather than only seeing the challenges they face. Keep it up, Wallgreens!

That’s all for this week. Have a link you’ve stumbled upon that you think is worth sharing? Leave it in the comments!

 

Friday Link Share

The following links are articles, blog posts, and other Internet tidbits that I’ve found particularly interesting in the past week.

Antidepressant use in pregnancy may raise autism risk: A CNN article looking at a new study that found a possible link between SSRI usage during pregnancy and autism risk. The study was small and definitely needs to be followed up with a larger sample size to have more weight and validity, but it’s an interesting direction to explore. I’m concerned by the rabid way the media is latching on to this very preliminary study, though… there is nothing here that should be triggering any kind of “blame game.”

“Wombs of Doom” or “How I Stopped Worrying and Learned to Love Poisoning My Children with SSRIs”: One mother’s response to the over-the-top reaction people are having about the above study, and her personal choice to continue SSRI usage during pregnancy. An important read for keeping things in perspective.

Environment blamed for autism: Despite its sensational title, this article does a decent job at discussing the nature vs. nurture debate that has arisen due to conflicting study findings, and some of the concerns researchers have by the misinterpretation of findings.

For Some With Autism, Jobs to Match Their Talents: A New York Times article about a Danish company, founded by a man whose son has Asperger’s Syndrome, that specifically trains and employs individuals with Asperger’s and high-functioning autism. You can read a follow-up article here.

A Coordinated Effort: One of my favorite autism moms and bloggers, Solodialogue, discusses her frustration at the lack of communication between the various specialists who work with her son. An important read for professionals, and some great ideas for parents in the comments.

That’s all for this week. Have a link you’ve stumbled upon that you think is worth sharing? Leave it in the comments!

 

Summer Camp, Autism, and Shadow Aides

Now that school is out and summer is underway, my job as an ABA therapist has gained a new facet: Working as a shadow aide at summer camp a few days a week! For those of you not familiar with shadow aides (also known as 1:1 aides), my job basically consists of attending camp (usually a camp for neurotypical kids) with a child with autism and doing what I can to make it a successful and enjoyable experience for the kid I’m with and the camp community in general. Sometimes it means I hang back and watch a kid for most of the day, only stepping in when problems arise; other times, it means I get to be a really big camper, participating in all of the summer camp activities side-by-side with the other campers to help my kiddo know what to do.

Side note: Being a shadow aide at summer camp is both rewarding and strange for me, because when I met my very first kid with autism, it was as a camp counselor in high school. I spent two weeks enamored with Jake (name changed) and his shadow aide, and after those two weeks, I pretty much knew that I would be working with kids with autism in the future. I spent a lot of my time that summer asking his shadow aide a million questions about autism, what her job was like, how I could get involved, etc. It’s strange to be on the other side of that relationship now!

In the past month or so, I’ve been to a handful of different summer camps with different kids, and have had some interesting interactions with camp staff, both good and less than good. The rest of this post is a list of things I wish camp staff knew or did more often; let me know what you would add!

***

Blue’s List of Summer Camp Guidelines For Working With Shadow Aides
Or, how to deal with the weird adult who insists on being in your camp group

1. The kiddo is the camper, not me. Try talking to him first, before you talk to me about him. Welcome him before you welcome me. A lot of people refer to us as “shadow aides”; please try to see me as his shadow, not as someone who should get a lot of attention. I want to blend as much as possible and let him enjoy camp as typically as possible.

2. The kid I’m with isn’t deaf, stupid, or feelingless. If you have a question, please feel free to ask me, but please remember that the kid I’m with can hear you and probably understands more of what you’re saying than you think. Some good questions to avoid (that I’ve already been asked this summer) include “What’s wrong with him?” and “Will he ever get better?”. Some better questions are “How can I help (name) enjoy camp?” or “What can I do when (name) is (specific action, such as hand flapping) to help him out?”. Concrete questions that help the kiddo enjoy camp are always appreciated; negative, judgmental questions, not so much.

3. I’m not a mind reader. If I’m with a verbal kiddo, or one with some sort of communication device, please ask them about their preferences instead of asking me. Obviously this isn’t practical for all kids, but I don’t actually know what he or she wants at a given moment– I’m not magically attuned to his or her every thought. So when you pass out snack, ask the kid if he wants a juice box, instead of asking me. I can tell you if he usually likes them, or if she’s allowed to have one, but only the kid can let you know if they WANT one.

4. I’m not here to judge you as a camp teacher. Honest. I’m not some corporate spy. More likely than not, I’m so preoccupied with focusing on my kiddo that I’m only half aware of exactly how you’re running your camp group. I’ve been in your role before, and I know it’s nerve wracking having another adult in the mix, but I’m really not here to judge you. You do your job, I’ll do mine. You’re better than you think!

5. Please don’t tell me not to do my job. I know you mean well when you tell me to back off and let my kiddo “have fun” without me, but please trust my judgement about how close and how involved I need to be. If I’m always at my kiddo’s elbow, it’s because recent past experience has shown me that he needs that level of involved assistance to do well. I’m not trying to ruin his day by being here, promise!

6. On the flip side, please trust that I am doing my job. If you don’t feel supported enough, please please please let me know, but if things are going well and I’m hanging pretty far back and looking at my notebook, it’s because I’m thrilled with how well my kiddo is doing and am trying to give him the space he has earned by showing me that he can handle himself. For some kids, having an aide all up in their business for hours on end is frustrating and aggravating; especially for kids like that, if I can hang back and they can do okay, I’m going to hang back.

7. Please don’t be offended if I don’t engage in much small-talk when you try to be friendly. I really do appreciate the effort, but you’d be amazed (and, sometimes, horrified) at the trouble my kid can get into if I take my eyes off them for 5 seconds!

***

I hope my list doesn’t sound too negative. I’ve really enjoyed all of the camps I’ve been to thus far this summer, and am thrilled that I get to keep going to more for the rest of the summer. For those of you who are parents of kids with autism who have been to camp, I’d be interested to hear how that experience was for you, and whether my list sounds like how you would like camp staff to interact with your child and his/her aide. Am I completely off base? Or does this sound pretty accurate?

Happy summer, all!

 

“What do you do for a living?”: Reactions to working with autism

One of the most interesting (and frustrating) aspects of my job, outside of actually working with the kiddos, is the reaction I get when people hear what I do. I have yet to meet anyone who hears “I work with kids with autism” or “I’m a behavior therapist for kids with autism” and doesn’t have a strong reaction of one type or another. The reactions I get usually fall into one of three categories:

1. Personal connection (“My son/daughter/nephew/niece/cousin/neighbor has autism!”)
2. Excessive praise (“That’s so wonderful! We need more people like you! You are such a special person!”)
3. Immediate negativity (“That must be so hard. Those kids are so difficult to handle. I’m surprised you’re willing to do that.”)

Reaction 1, finding out the person I’m talking to has a personal connection to autism, always makes me a bit sad, simply because I’ve found this reaction more and more common with each passing year. I don’t know why the numbers are rising, but they are, and it seems almost impossible for me to meet anyone who doesn’t know someone either first or second hand with autism. That isn’t to say I don’t enjoy meeting people who know what autism is like– I love the conversations that can stem out of this reaction, and I genuinely appreciate the people I have met through this reaction. It’s just hard at times realizing what a massive reality autism is becoming, and trying to comprehend how many people are affected (directly and indirectly).

Reaction 2, which I have been getting since I first started voicing my interest in working with kiddos with autism, has always irked me, and I struggle to put into words exactly why. The work my coworkers and I do is important; I don’t disagree. And with the rising numbers, it’s true that there do need to be more people doing what I am doing; more are needed every day. But I shy away from being held up as being some extraordinary human being simply because I enjoy working with the kids I work with. I guess part of it is the strong distinction I make between my kiddos having a disability vs. my kiddos being broken. Autism is a disability, and it makes their lives difficult. But it does NOT mean that they are broken, or less than, or defective. It does not take a superhero to enjoy spending time with the amazing kids who fill my day every workday. If anyone is a superhero, it is the parents who don’t have the choice of clocking out at 5:30 every weekday (and taking weekends completely off), who never chose to enter this field but who are their children’s #1 advocates, caretakers, educators, and everything in between.

Reaction #3 is the hardest for me to deal with. I want to rise to the defense of the kids I work with, to somehow make the person I’m talking to see how amazing they are, to let them experience the hilarious, touching, wonderful moments of life I see every day at work. But I feel as though I always fall short in my attempts, sputtering something to the effect of “No, they’re really great, I love my job, the kids are amazing…” and the person I’m taking to mentally pats me on the head and moves on, unconvinced. I usually leave these exchanges feeling frustrated at my lack of clear communication, but not very perturbed; after all, their views of what autism is and isn’t aren’t going to have a real effect on me or on the kids I work with, and hopefully they’ll have an experience in the future that will broaden their view of autism beyond “those kids are hard to deal with.” But sometimes, I get this reaction from someone who really ought to have a more holistic view of autism, and I’m left feeling useless.

Which brings us to what spurred me to write this blog post in the first place. You see, this past Monday did not go exactly as planned– instead of spending my day first in kindergarten and then hanging out with an awesome kiddo for a few hours, I spent it first at the doctor’s, and then in the ER for a few hours. Much less fun, let me tell you– I’ll take tantrums and time outs over low blood pressure and IV’s any day! (For the record, I’m doing much better now, and only missed the one day of work, so no real worries on that front.)

While I was at the doctor’s (and then at the ER), everyone I met asked what I did for a living. And without fail, every single medical professional I talked to had the same reaction: “Do you like your job? Why? Those kids are so impossible to work with. You won’t stay in that field for long– it’s too hard. Why would you want to?” Some were more outspoken in their views than others– one of my ER nurses lectured me about my career choice for a good 10 minutes. After each conversation, I was left with an ever-growing feeling of unease. What kind of care are kids with autism who need emergency medical care receiving, when the prevailing mentality seems to be that they’re nightmares who should be avoided if at all possible?

Trying to withhold judgement, I looked at the situation from the other side, from the perspective of the doctors and nurses. Assuming that all of their experience with and knowledge of autism comes from patients they see, I guess it’s logical that they would have a negative view of individuals with autism– no one is their most personable, acceptable self when in the middle of a medical emergency, and for someone with autism, the huge routine disruption of going to the hospital in and of itself is likely to trigger the worst of behaviors. Medical staff probably see kids with autism in full-blown meltdown mode, more often than not, and let’s face it– that’s not a fun place to be, for anyone involved.

I don’t know what training, if any, emergency room staff receive with regards to working with individuals with autism, but whatever it is, it clearly needs to be supplemented with something more, something positive. I wish the doctors and nurses I met who were so negative and incredulous about my job choice could come to an outing with me and the kids I work with, to see the joy on Mark’s* face as he jumps in a bounce house or hear the excitement in Alex’s* voice when he pushes the bowling ball down the lane for the first time. I feel as though experiencing kids with autism during their best moments could lend a great deal of compassion to those who work with them during their worst times; I know the memories of the good times are what make the tantrums and meltdowns bearable for me, and I think it must be nearly impossible to maintain a positive, or even impartial, view of a kid when all you see are the meltdowns and the hard, hard times.

Parents of kids with autism, what have your experiences with medical professionals been like? Have you found compassion and kind treatment, or have you faced quick judgement against your son or daughter? I’d be interested to hear!

*All names of kids I work with in this blog post, past blog posts, and future blog posts are fictional

 

Practice Anxiety: Are we having fun yet?

Performance anxiety: We’re all been there, in one way or another. Giving a speech in front of a room of strangers (or, worse yet, peers), playing a sport in front of a crowd, or interviewing for a job can leave even the most confident person sweating, shaking, and looking for the nearest escape route. But what about practice anxiety? Especially when the thing you’re practicing is supposed to be fun?

Some context: In my non-therapist life, I play the celtic harp. Not well, and not often, but I play, and I enjoy playing. I started playing the harp in 2006, when a new friend let me sit down with her beautiful 29-string; since then, I have become the owner of my own beautiful little harp, a 26-string similar to the one pictured on the left. I mostly just play for myself and casually for my friends; the only actual performance I’ve ever done was the prelude for my college’s Baccalaureate, when people were wandering in and (hopefully) not paying too much attention to the awkward girl on stage playing the harp. This coming weekend, I will be performing with a local harp group at a two-day Scottish Games event, playing twice a day for a total of four public performances. I only know three of the many-more-than-three songs the group will be performing, and while no one expects me to be perfect (or even to know all of the songs), I went into this planning to at least know the chords for all of the songs (so that I would be able to participate in all of the songs, even if not fully perform the melodies). I’ve had the set list for over a month, and live with an accomplished harper who is more than willing to help me learn whatever I want to learn, and yet all I have done in the past month is avoid practicing and, when pushed, practice the songs I already know.

So what does this have to do with autism? As I have come up with my plethora of avoidance tactics and excuses to get out of learning the new songs, I’ve begun to see a parallel between myself and one of the kids I work with most frequently. This kiddo is highly verbal, and most of the work we do together is play-based, to help him become more confident and comfortable playing with his neurotypical peers. We pretend to be pirates, build abstract “cars” and “boats” out of LEGOS, play boardgames, talk about Transformers, put on ridiculous puppet shows, and generally geek out to the best of our preschool-aged-boy abilities. We also what to say when you want to play with someone, what to say while you’re playing with someone, and what to say when you’re all done playing with someone. The kiddo I work with is a rockstar at all of this. He can play anything I throw at him, pretend-play included (which is HUGE for a kiddo with autism– so proud of him!), and can keep a pretty awesome on-topic conversation going while doing so. And despite his awesomeness, it is a battle to get him to begin any of these activities with me, almost every single time. Once we’re engaged in playing, he doesn’t want to stop, and seems to genuinely enjoy himself, but convincing him to start playing during therapy is usually an uphill battle to start.

The kids I work with are logical and, in their own way, extremely rational. I feel as though I owe it to them as a therapist to take them seriously when they balk against my requests, and to try to figure out why they don’t want to do what I am asking them to do, especially when I’m asking them to do something that I know they enjoy and are good at. I’m not in this job to be a dictator, or to ever force kids to do things against their will for my own enjoyment.

I already had some ideas as to why my kid was so reluctant to “practice” play with me at home, but when I was practicing harp last night (after avoiding doing so for the better part of the weekend), some of the pieces began to fall into place for me. I’m sure that there’s more going on than I can put into words, but some things that I think I now understand, moreso than I did before making the personal connection:

• Play is work! I love playing the harp, but it is extremely hard for me, and doing hard things is exhausting and, often, it seems as though the energy I will need to put in might not be worth the enjoyment I will get out of playing (even though, 9 times out of 10, the enjoyment ends up outweighing the work). I forget that play can be such work for kids with autism when I am working with this kiddo, because he is so genuinely happy once he’s engaged in play, but I know he has worked hard in the past to learn all of the play skills and conversation skills that he is demonstrating, and they still do not come naturally to him (although he does a great job of making it seem like they do). Play is fun, but play is also work, and sometimes that is exhausting!

• Play is rarely as effortless as it seems. When I watch others playing harp, all I see are graceful fingers and hands; when I play, I have ten digits all getting in the way of one another as I desperately try to remember melodies and chords and timing and I’m supposed to smile and have good posture and keep my hands and arms at a certain angle and… phew! In the same way, even though playing games comes naturally to me, my kiddo has to focus extremely hard during our play, trying to do the right thing while saying the right thing while remembering the rules of the game while remembering to check in with my face to make sure I’m enjoying myself while refraining from stimming while… you get the picture.

• Play is intimidating. When I sit down to practice, even a song I have played a hundred times before, my brain sometimes gets overwhelmed with the “what if”s. What if I mess up? What if I make a mistake? What if I forget the song half way through? I can only imagine how these feelings must be multiplied for a kid with autism who has little option of avoidance and who didn’t choose to be in this situation in the first place. At least I signed myself up for this harp concert– my kiddo never asked to have autism, to have difficulty playing with typical peers, or to be expected to play in the first place!

For me, at least, the work, effort, and intimidation of playing harp during practice is almost worse than that of an actual performance, for two reasons: I know I don’t have to be doing it, and it usually is focusing on the things I am the worst at (and thus need to practice the most). True, I technically know that doing the hard things now will make them easier in the future… but that doesn’t mean I want to do them now! And that’s my supposedly “grown-up” self talking– is it any surprise that a preschooler would balk against doing something they knew was hard, if I’m doing so?

I don’t pretend to fully understand any of the kids I work with, but seeing the connections between my “practice anxiety” and their play avoidance helps me to approach the situation differently, with more empathy and patience. Just because something is fun doesn’t mean it’s easy; just because I might enjoy something later doesn’t mean I necessarily want to go through the hard parts to get there right now. I guess it’s my job as a therapist to help make those hard parts as easy as they can be, and to make the fun be as fun and rewarding as possible.

And with that, I suppose I should go practice some harp.

 

The power of technology: AAC Devices!

This past week was Spring Break for most of the school districts in the area, so almost all of the kids I usually work with were unavailable for therapy (since the districts don’t fund therapy when school isn’t in session, which I think is ridiculous– do they think autism stops existing for those weeks? But that’s a rant for another post). As a result, I got the opportunity to work with a kid that I’ve never worked with before. I always look forward to meeting and working with new kids, because they always challenge me to reassess my view of what autism is and isn’t. It is so easy to assume that my experience with autism, the individuals I have met and worked with, encapsulates all of autism, but that is completely false. The common saying is true– If you’ve met one person with autism, you’ve met… one person with autism. And, in my case, if you work with six kids with autism on a regular basis, you have a good sense of what autism looks like… in six kids. So despite my frustrations about most of my kids not getting funding this past week, I was pleased that the change in schedule gave me a chance to go meet another kid with autism and expand my knowledge and experience tiny bit. In this case, the lesson I learned was how amazing different forms of communication can be, and how beneficial technology can be.

A bit of context: The kids I work with have varying levels of verbal communication ability. Some are highly verbal, with some idiosyncrasies to their speech that make it stand out at times but do not impair their general ability to communicate and converse. Other kids that I work with have extremely limited verbal vocabularies, usually consisting of words expressing (and thereby requesting )their favorite toys, actions, and experiences. For these kids, verbal communication is supplemented with some form of nonverbal communication system, with varying levels of success on a case-by-case basis. Until this past week, I had experienced nonverbal communication systems in two ways– basic American Sign Language (especially for words like “help” and “more”) and PECS.

One example of an AAC device, the DynaVox Maestro.

This past week, I got to “meet” my first high-tech Augmentative and Alternative Communication (AAC) device. The boy I got to work with has a device similar to the one pictured to the right. It has a touchscreen, on which a myriad of icons are displayed. Most of the icons are headers, which lead to a screen of related icons when pushed (for example, pushing the sheep leads to an entire screen of animals). When an icon is pushed, the word associated with that icon appears at the top of the device; once all of the desired words have been selected, the newly formed sentence can be tapped and the device reads it out loud, giving a voice to the user who might otherwise not be able to engage in verbal communication.

I’ll admit that I was fairly skeptical when I first saw him using the device– one of my coworkers asked him how old he was, and he quickly chose the icons to say “I am 6,” then looked to her for praise. I’m a huge fan of anything that makes communication possible, but I try to be critical of the rote learning that can happen with ABA; was he really answering her question, or had he simply learned that you push those three icons in that order when the therapists asks that question? However, as I spent more time with him, my skepticism began to fade. Later in our session, when he wanted something that he wasn’t allowed to have, he pushed “want (the object)” multiple times without any prompting from any of us, and then pushed the icons for “feel mad feel angry feel sad” after my coworker had made it clear to him that he would not be getting her cellphone. She never asked him “How do you feel?” or otherwise prompted him to express his feelings about the situation– that was all him.

Watching this kid interact with us through his device was phenomenal. Previously, I had only worked with kids who either had strong verbal communication, or who had limited verbal communication plus limited nonverbal supports. In contrast, this boy had limited verbal communication, but had such a strong nonverbal communication system that I stopped noticing. His device very much was his voice, and he clearly viewed it as such– at the end of our session, it was the first thing he grabbed to take with him, before grabbing any of his toys or shoes.

After just 2 hours (the length of our session), my head was filled with questions and ideas about how technology-driven communication devices could be used with the other kids I work with, and to what effect. Clearly not every kid will take to them; the labyrinth of icon menus is intimidating, even for someone as “fluent” as the boy I was working with, and can definitely lead to frustration-fueled behaviors and meltdowns. And technology is, unfortunately, expensive. Really expensive. As in, more-than-$10,000 expensive, if your insurance doesn’t feel like helping. Which is ridiculous– this isn’t a luxury item, this is a communication device! A quick search of the iPhone app store reveals an app that claims to be somewhat similar in function for $15.00, but it clearly would be limited in vocabulary. I’m curious as to what exists for the iPad, because it seems like that would be the perfect platform for a communication program, and is comparatively inexpensive.

For any special needs parents reading this, what forms of communication does your kid use? Does technology play a part in their communication? If not, do you think it might help? I’m curious to hear others’ experiences!