My parents didn’t understand how my heart ached for designer jeans. I wanted them. I needed them. When friends had me over to show off their new jeans, I would palm the discarded informational tags so I could take them home and pore over them: “The Sassoon fit is extremely tight! You may need to lie on your back, on the floor, in order to zip them up.” I resented my plain beige Health-Tex trousers, which came with no such warning labels.Do you remember designer jeans fever? Did you succumb to it? Did you ever peg your jeans? Or wear jeans with zippers on the ankles? If so, please take a look at the story, and leave a comment on that site, should you be so inspired.
TweetSo, I have a new job. Unlike the parenting and the volunteering, it results in dollars in my pocket, and in contrast with my BlogHer Contributing Editor gig, I'll be compensated per hour, rather than per deliverable. It's slightly more than half-time, it's from home, and it's flexible -- really, what else can an already-busy parent ask for?
I envision a new era of time management and conscripted child labor in Casa Rosenberg. Leo is getting really good at helping me with the laundry and folding his clothes, and even Mali can set the table. Long-indulged Iz needs a bit more prodding, but is generally amenable to pitching in as long as she's not experimenting with whiny, resentful tweener mode.
By the by, my last BlogHer article was about special needs and hygiene. Really frank talk about how topics like circumcision (or un-), dental care, and toileting skills can be affected (or not) by special needs, and how we parents have to be extra-cautious about underestimating or smothering our kids' self-care skills. I'd love to have more voices join the discussion.
TweetAs I've noted before, signing Leelo up for camp can really suck. There is no reason parents of kids with special needs -- parents who deal with enough challenges already -- should be put through the indignity of having to wait, overnight, outside an office building, so that their child can go to the one local camp that accommodates kids who need full-time aides. The overnight cage match signup also means families who can't spare a parent for the sixteen-hour overnight vigil are out of luck.
My friend and I agreed that signups were sucky and unfair, so I wrote to the camp's administration. I suggested they implement a lottery system so that parents only have to show up for an hour or two during the morning. I cc'd my parent friends on the email. Those friends then replied all, and told the camp staff that they backed up a lottery option, even if it meant some of our kids might not get in. Then we straightened our ties and went back to parenting our children.
The Fall camp registration packed arrived three days ago. And, even though it acknowledged that administrators received suggestions from parents regarding how to ensmoothen the process, they didn't change a damn thing -- except to expressly warn people that they might have to wait overnight, and that we should try to keep our tempers. Awesome.
And you know what caps off that awesomeness? I can't go to the registration -- it's during Seymour's Jackson Hole business trip. When I wrote that email asking for a lottery, I was unknowingly advocating for my own family.
Whiskey Tango Foxtrot, camp administration people! Why wouldn't you try to make the process easier for yourselves as well as for the families you serve? Do you use the stories of the desperate way parents and caregivers brave near-freezing overnight temperatures to line up for camp to bolster your fundraising, as was suggested by a cynical friend of mine after three beers? Because in case this hasn't come through clearly enough, the overnight signup process not only sucks, but it's completely unfair to families who can't participate. I'm not thinking of us so much (though I am bummed, and Leo's going to be sad) but of families who are constantly excluded from camp because of sign up absurdity. You are amazing people in all other ways; please reconsider, and please don't do this to your campers' families again.
TweetIf you read this blog and my posts on BlogHer, you know I consider Rethink Autism's "web-based autism treatment platform for parents and professionals" an incredibly useful and long-needed addition to the autism and education fields.
What you may not know is that I am a former software producer, and so am floored by the scale of Rethink Autism's production effort, and its resulting product quality. I could tell that Rethink Autism is a truly content-rich, dynamic, and flexible learning resource for autism families and professionals, but I wanted to know more about the process and philosophy behind the site: How was it developed, and why? How does the team decide what kind of lessons to include? Who are they planning to reach, and how will they make it more accessible to families with financial and language concerns?
Fortunately for me and for you, Jamie Pagliaro from Rethink Autism agreed to answer these questions, and more. Please do leave a comment if you have a question of your own, or would like clarification.
Can you tell us, briefly, why Rethink Autism was founded? Who was the primary team? What are your primary goals? Who are you trying to reach?
The mission of rethink autism is to offer parents and educators immediate access to effective and affordable Applied Behavior Analysis-based intervention tools for the growing population affected by autism spectrum disorders. Our core team has expertise in three main areas: clinical, technology, and filmmaking.
I have personally worked in the field of autism education for the past fifteen years, most recently as Executive Director of a public charter for children with autism in New York (the New York Center for Autism Charter School). During that time, I have been faced with many desperate parents trying to gain access to services, and many educators struggling to appropriately meet the needs of children with autism. With growing numbers of newly diagnosed children, the task ahead for policy makers and the professional community is even more daunting. For parents, this means longer wait lists, more diluted funds, and limited access to experts. What compelled me to join Rethink Autism was the idea of making research-based treatment tools accessible to everyone -- not just a select few -- in a cost-effective way.
Simply put, our goal is reach as many children with autism [as we can] through parent and organizational subscribers. We currently have individual parent subscribers around the globe. Some are in rural areas working with limited access to professional support, while others have professional support and are using the system to coordinate treatment across team members. We also have a number of organizational users across the country, including public school districts, early intervention providers, and nonprofit service agencies. They are using our platform to enhance their staff training, curriculum planning, and outcome monitoring. We are committed to keeping all of our users on the cutting edge of autism treatment research.
Can you tell us the scale of the Rethink Autism effort, and how long it took to build content and develop the site?
The entire site and its content were developed in one year. This was a tremendous undertaking that took a team of committed professionals on the clinical, technology, and filmmaking fronts. On the clinical side, we worked with about forty families in NYC who brought their children with autism in for filming sessions with our therapists on a weekly basis. During the year, we filmed thousands of hours of therapeutic sessions, each one carefully planned to help us create our 400+ training and lesson videos.
Our clinical team was also fully integrated into the filmmaking aspect, working with our production team to coordinate shoots, and edit each session. In fact, each lesson video was reviewed for clinical integrity by at least three separate clinicians. Our senior clinical advisor, Dr. Bridget Taylor, personally worked with our therapists to plan each lesson before filming, and reviewed each lesson for clinical integrity as a final checkpoint before adding it to our library.
In parallel, we designed the website interface to be aesthetically pleasing and incredibly user friendly. The families that we worked with also helped us test the interface at every step of development. For this reason, we are proud to say it has been parent tested and approved! It is also worth noting that thanks to their insights and suggestions for improvements on the design, using the website requires no formal training, explanation, or manual once you log on.
Do you plan to keep expanding the content and curriculum? If so, via existing plans or community feedback?
Absolutely! One of the aspects of this project that attracted me was the opportunity to continuously evolve and develop new content. And because we are web-based, this happens seamlessly for our users (i.e., they don’t need to buy or download anything new -- it’s added automatically!).
We are creating new content in our production studio every week. The ideas come from parent requests for specific lessons, suggestions from our scientific advisors, and plans that we have developed internally for curriculum expansion. For example, a few weeks ago a parent asked us about getting her son to tolerate wearing a band-aid. We developed a lesson to teach this, filmed it, and within two weeks added the lesson to our site. We also spent some time with one of our scientific advisors earlier this summer, Dr. Peter Gerhardt from the Organization for Autism Research, and he worked with us on developing new content for adolescents (e.g., pre-vocational and self-care skills) and higher functioning children with autism.
Sections of the site are freely available/not password protected, e.g., the sections on general autism information and advice. Do you have plans to expand those sections as well?
Yes -- in fact this September we rolled out a series of free back-to-school webinars, which included live chat with our senior clinical advisor, Dr. Bridget Taylor. There was also a free back-to-school tips video that accompanied the webinar. The response to this was overwhelmingly positive, so we will be doing additional free “tips” videos and live webinars on a monthly basis. Coming soon is Participating in Social Events, and later this fall we will have two special webinars on Managing Problem Behavior at Home and an Orientation to Parents of Newly Diagnosed Children. The later we are doing in conjunction with our friends at Autism Speaks.
How does email support work? Do you have behavioralists on staff to answer email queries, a professional customer support staff, or a combination?
We have a team of committed clinicians on staff to respond to parent questions regarding use of our curriculum. They are led by a PhD-level Behavior Analyst, and all of them have significant experience working with children with autism at home and in school programs. We want to be clear that we cannot offer formal clinical recommendations to families, as we do not come out to directly observe or work with your child. However, the Curriculum Support we offer has been an invaluable resource to many families working with limited or no professional support at home. All of the Curriculum Support is done via email, and we always respond within 24 hours during the week.
Rethink Autism is currently available in English. Do you have plans to translate the site and content into other languages? (As a former software producer for content-heavy products like world atlases, I understand the massive scale of a localization effort. But I also live in California, and constantly see families affected by autism falling through the cracks due to language barriers.)
Our goal is to begin translating into Spanish next year (2010). We recognize the need for translation, and have already had requests from individual families and organizations throughout the world. Once we have a critical mass of English-speaking users, we hope to deploy more resources into this international dissemination effort. As you have noted, this is a massive undertaking due to the amount of video content we currently have, and would therefore need to translate.
Do you plan to offer a sliding scale or scholarships for families and institutions in need? The $100/month personal subscription exceeds many autism families' budgets, especially during current financial tough times.
We fully recognize that there are many families in need, and our commitment is to making Rethink Autism accessible and affordable to as many of those families as possible. One of our goals is to be a self-sustaining company that keeps the cost of a monthly subscription at a level roughly equivalent to one hour of professional consultation. In the future, as our company grows we hope to offer subscription assistance to low income families, and have started to engage local and national nonprofit organizations about this. We have already donated free content to a number of these organizations as a way to support them in the short-term.
Rethink Autism has already hosted webinars, as well as live chats with professionals like Dr. Bridget Taylor. Are there any plans to host live, IRL seminars or conferences?
We are actively considering many different options, including live seminars. We already attend and exhibit at a number of national conferences in an effort to raise awareness about Rethink Autism. In the coming months we will be exhibiting at:
- Autism NJ conference in Atlantic City, NJ (Oct. 8-10)
- American Academy of Pediatrics conference in Washington, D.C. (Oct. 16-18)
- Organization for Autism Research conference in Arlington, VA (Oct. 22-24)
- NY State Association for Behavior Analysis conference in Albany, NY (Nov. 4-6)
- National Autism Association conference in Weston, FL (Nov. 12-13),
- OCALI conference in Columbus, OH (Nov. 17-19).
We are also continuing with the Free Live Webinars this fall, and will be sure to keep you posted!
I didn't realize we had tarantulas in Northern California, until Pat the Cat announced this one's appearance on the back porch just as our two babysitters arrived to spring me and Seymour for date night, and while I was finishing making the kids' dinners.
If Seymour ever doubted my love for him, he can stop now. Because when I called to let him know about our eight-legged guest, his first reaction was to ask me to capture it so he could see it himself. Which I did. Which he appreciated.
TweetGot me a new post up on BlogHer, about how there is no reason for those of us with special needs in our lives to be sad and lonely if we have internet access. We can be sad and lonely TOGETHER! I jest, but seriously, people -- if you're feeling isolated, Twitter and Yahoo! Groups are just waiting for you to plunge into their warm, squooshy, welcoming depths. I have specific recommendations in the post, but don't forget to leave a comment about your own favorite online special needs community resources, too.
Can I Sit With You? has a new post, as well, with guest input from tween and teen social skills and advice expert Annie Fox. She covers four frequently asked teen bullying questions, with ideas for what kids can do in each scenario. Meaty stuff. Check it out and let us know what you think about her take on teen troubles.
On October 6th I'll be doing a BlogHer Q&A with Alison Singer, founder and president of the Autism Science Foundation. Whether Ms. Singer makes you cheer or spew nastiness, I am certain that you, like me, are curious about the direction and goals of the Autism Science Foundation, why it was founded, and how it will differ from Autism Speaks. Read Ms. Singer's own perspective on the "driving off a bridge" statement in the Autism Every Day video, neurodiversity, and autistic heterogeneity, then send me your questions or leave them in the comments before September 27th.
TweetI finally polished off the novel Badger gave me, A Fistful of Sky. I enjoyed it thoroughly, have passed it to a delighted Iz, and recommend it with many exclamation points. (!!!!!!!)
The cover art and blurbs are silly and misleading, so ignore them -- this is not a book about an ugly duckling who transcends her misfit ways, so let's pause for a nose-thumb to crappy and insulting stereotypes. Rather, it's about a confident young woman, Gypsum, who is happy with her non-mainstream appearance despite the disapproval of her conventionally beautiful, trim, stylish mother and her (literally) charming ways. Gypsum's struggle has little to do with her outward self, but instead concerns her status as the only non-magical kid among five siblings.
I love the book's exploration of style and girlyness and body size through unpredictable magicks, and the way those factors are handled with humor and empathy, yet with few judgments and certainly no concessions to the what the author calls "girl torture." There are a couple of elements some parents may object to; in one scene Gympum sees two two people "going at it" behind some bushes, and there is also a mention of rape, but neither of these are explicit enough to deem it unsuitable for Iz's sixth grade peers, at least in my opinion.
I have to write, I am totally freaked out by how many similar themes run through A Fistful of Sky and my own unfinished story manuscript. (I usually wouldn't mention anything I was working on unless it was in a state worth mentioning, but feel I should record my freaked-outedness now -- because if I ever do finish my story, I don't want Nina Kiriki Hoffman to sue me.) So many eerie parallels with regards to how magical families might live amongst the rest of us in contemporary California, the traditions and rules such families might uphold, and the importance of training one's kids in potential post-apocalyptic community survival skills. Too weird. But so beautifully told. If I produce something even half as creative and moving, I'll be content.
Bye, darlings! Take your time coming back home!
Don't get me wrong -- we had a lovely summer, full of adventure and visitors and travel and parties and hikes hikes & yet more hikes -- but I am cherishing having my house to myself for the first time in two months. I suspect I'm not the only one tickled about school resuming, hmm?
I shall now scrub the house from top to bottom wearing nothing but my bra and underwear, because I can.
see more Lolcats and funny pictures
There are big holes in the wall (from Leo ripping out the toilet paper holder) that I don't want guests coming over in 20 minutes to see, and Seymour is sick of people looking at his own picture while they relieve themselves. Feel free to suggest another candidate.
TweetIn case you haven't seen Rethink Autism, it is a new online program for delivering video-based ABA therapy training, collaborative data tracking -- and really good, compassionate, sensible information about autism in general -- to families who might not otherwise have access to ABA resources. It is available to anyone with a computer and internet connection, for $100/month (personal account). The program covers academics, social skills, behavior, and motor skills. Here's my recent writeup from this blog:
I'm not aligned with or compensated by Rethink Autism except intermittent site access for evaluation purposes. I just think it's a wonderful and much-needed resource for the ABA therapy-using segment of the autism community, and want to help them make it even better.
TweetMaudlin But True Week continues here at Squidalicious.com, with an open letter to Leo's teacher that I wrote on request for the buttkickerinistas at BlogHer as part of their Back to School campaign:
I will write that, after one week in his new third grade class, everything I've written about the teacher and Leo's potential in her class seems to be marching along. He had a lovely first week, with "0 transition issues" on the second day. I am wishing for similar success stories for all of your children as this 2009-10 school year ramps up.
TweetI found this poem while compulsively properly sorting out bags of "recyclables" that were mostly not recyclables, and which resulted from Iz and my mom doing a detritus purge on said girl's bedroom while Seymour and I were off on our anniversary trip to Tahoe. (Our girls can thank their grandmother for being able to see the floor of their room now -- Mali discovered that their rug is a map of the world!)
Iz said I could publish the poem, as long as you all understand it's not her best work:
LeoNote that it's not a good idea to wipe tears from one's eyes with hands that are covered in pencil shavings.
Leo is different
Yet I love him
still. Hits, grab elbows,
chews on straws. I
cope with all of this
For I am his big sister.