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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!

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Posted by on July 15, 2011 in Autism, Uncategorized

 

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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!

 
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Posted by on July 8, 2011 in Autism, Uncategorized

 

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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!

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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!

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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!

 
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Posted by on June 30, 2011 in Autism, Uncategorized

 

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The Amazing Carly Fleischmann

My mother (and my father, and my former professors, and all of my friends…) has the habit of sending me anything autism-related that she stumbles across on the news on on the Internet. Sometimes it’s something I’ve seen before, and I can just take the opportinity to talk with her about the information, to agree that it’s really cool or really frustrating or whatever it is. However, more often than not she finds me gems that I likely wouldn’t have come across on my own, given my lack of television and my general aversion to Youtube.

Back in 2008, Mom sent me an email telling me to check out ABC News’s website, where there was a story and an upcoming live interview with a 13-year-old girl with autism, Carly Fleischmann. I checked it out, and I was blown away. Carly in nonverbal, but when she was 11 years old, she began typing on her family’s computer (the first time, to let them know that she was in pain, typing “HURT” and “HELP”). Since that time, Carly has become an outspoken advocate for individuals with autism, giving the world a peek into what it is like for her to live her life.

This is the original 20/20 program that featured Carly:

Every person with autism is different, but through Carly’s writing, the intricacies of what it’s like to be nonverbal with autism are broached and explored. In sharing Carly’s story, I don’t mean to imply that every person with autism is exactly like her, nor that every nonverbal individual with autism will suddenly begin typing and communicating one day. I don’t buy the idea that there is a “normal” person trapped inside of individuals with autism, waiting too be set free. What I do believe is that people with autism are just that– people. Thanks to Carly, the world can see that fact a little more clearly, as she serves as a sort of bridge between the nonverbal autism world and the neurotypical (“normal,” or non-autistic) world, giving words to an experience that most of us can hardly even imagine.

Yesterday, Carly was featured on The Talk (hosted by autism mom Holly Robinson Peete), an event she has been tweeting about for weeks. It was great to see her on the show, enjoying herself and sharing her thoughts:

Please check out Carly’s website, follow her on Twitter or Facebook, and visit her blog for more of Carly’s awesomeness. And Carly, if you happen to read this, you rock!

 
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Posted by on April 16, 2011 in Uncategorized

 

A first post

This post serves, first and foremost, to hopefully squish my “the first post of a new blog must be amazing!!!” anxiety and allow me to actually start using this blog. What exactly will be contained in this blog is still being hammered out. But now that this post officially exists, maybe we can start finding out. Welcome, and enjoy!

 
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Posted by on February 12, 2011 in Uncategorized