Squidalicious Reviews


My Brother Charlie: An Autism Book Giveaway
April 14, 2010, 6:51 am
Filed under: autism, books

If you arrived here via my Squidalicious Holly Robinson Peete interview about My Brother Charlie, welcome! If not, please go read the interview. HRP is so wise and thoughtful and inspiring; I left the interview feeling re-energized about promoting autism acceptance for my son and his peers.

HRP is also very generous — she is offering one signed copy and two additional copies of My Brother Charlie to you lucky readers. If you’d like to win one of the three copies, please leave a comment below, and tell us why you’d like your own copy of this sweet, necessary children’s book. [Update 4.24: The contest is now closed; congratulation to the winners! -SR]

You may comment until 11:59 PM on Wednesday, April 21st. I will randomly select and announce the winners on this site on Thursday, April 22nd.

Here’s the official word on My Brother Charlie:

Holly Robinson Peete, bestselling author, actress, and national autism spokesperson, has paired with her daughter, Ryan, to co-author this uplifting book based on their own personal experiences with Holly’s son and Ryan’s brother, RJ, who has autism. In this story, told from a sister’s point of view, we meet a family whose oldest son teaches them important lessons about togetherness, hope, tolerance, and love.

Here is what Holly and her co-author daugther Ryan have to say about My Brother Charlie:

And here is Leelo’s little sister reading and reviewing My Brother Charlie, and also opining on how Charlie and her own brother are both similar and different:

Hardcover book retail value $16.99

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Dr. Bridget Taylor: Interview, Webinars on Autism & Problem Behaviors
The amazing behavioralist Supervisor M has been leading Leo’s ABA therapy team since he was two, but not every child with autism has my son’s luck. ABA therapy can be expensive, school districts can be resistant, and qualified therapists can be elusive.
How lovely that Dr. Bridget Taylor has become the senior clinical advisor for Rethink Autism, the online ABA Therapy curriculum resource. I know am not the only parent who, upon hearing that ABA therapy could actually make a difference for my child, daydreamed about having Dr. Taylor on his ABA therapy team. Dr. Taylor is the ABA therapist and researcher who helped Let Me Hear Your Voice author Catherine Maurice’s children lose their autism diagnoses. She also co-founded New Jersey’s center for learners with autism, the Alpine Learning Group. Thanks to Rethink Autism, she can now be part of any ABA therapy team with internet access.
The Rethink Autism team is aware that not everyone can afford their monthly subscription rate, so they have engaged Dr. Taylor to conduct free webinars, both tomorrow, Wednesday, October 20, and Monday, October 26, in which participants can discuss autism and behavioral problems with her, via live chat. Here is Rethink Autism’s summary of the webinars:
For many parents and families with children on the autism spectrum problem behavior can be challenging. That’s why this month’s free live webinar focuses on the best problem behavior treatment and prevention strategies available. You’ll learn how to begin immediately applying these techniques with your child and have a chance to ask questions via live chat with autism expert Dr. Bridget Taylor, a leader in the field of autism treatment and research, and rethink autism’s senior clinical adviser.
Register for a webinar session now by clicking a date below:

For those who can’t participate in the webinars, read on — Dr. Taylor agreed to answer a few of my and Supervisor M’s questions about autism, managing problem behaviors, the role of the internet in the autism community, and the most important things parents should be focusing on at various stages in their children’s lives:
What has drawn you, personally, to the Rethink Autism online and webinar model?
As a clinician working in the field of autism treatment for over twenty years, I am very excited about being involved in an innovative company that has the potential to reach many families of children with autism. I have always been committed to translating complex concepts and teaching techniques for families so that they can be empowered to teach their children. Rethink Autism’s video-based curriculum presents teaching techniques in a simple step-by-step manner so that families can see how to teach their children.
Do you plan to have your Rethink Autism curriculum contributions about managing problem behaviors at home, etc., evolve with your research findings at the Alpine Learning Group, for example reducing too-rapid eating by use of a pager prompt?

All of the Rethink Autism’s teaching techniques and procedures are based on research that has been conducted in the field of applied behavior analysis. The techniques that I will discuss about managing challenging behavior are based on general principles of learning, and how challenging behavior is usually a result of the interaction between environment and behavior. That is, behavior occurs in relationship to certain events occurring in the environment. If we can identify those events and determine the reason for the challenging behavior, we can change behavior for the better. The pager prompt study is one example of how you can teach an individual with autism to attend to specific cues in the environment in order to reduce a behavior of concern. In this case eating too quickly.

Some children with autism engage in problem behaviors due to skill deficits and; a general lack of self-management skills; they do not yet have a rich repertoire of independent play, leisure, and self-care skills (and so must always be engaged by an adult). In addition to teaching independence, what are some ways school staff and families can manage these problems without promoting problem behaviors (e.g. excessive repetetive/stimulatory behaviors, prolonged dependence on adults?
Yes, many children engage in behavior because they lack skills in specific areas. So, teaching children with autism play and leisure skills can replace some repetitive behavior. Teaching children with autism for example to follow photographic activity schedules can help to keep children stay engaged without constant prompts from adults. Research in the use of activity schedules has shown that children can sustain engagement by attending to photo cues that serve as prompts to engage in play and leisure activities. In addition, teaching other functional skills such as how to ask for a break when demands are too difficult or how to wait for a preferred activity can be helpful to reduce challenging behavior associated with these contexts.
What are some suggestions to include the family member with autism in general family activities? Day to day living?
Make activities very predictable and start with short realistic activities. For example, if you are going to a restaurant, begin with one that does not require a long wait (e.g., a fast food restaurant), and bring your child’s preferred activities to engage in during the waiting period. In general, help the child with autism know what is expected of him / her in during the activity (e.g., first we are going to the store and then we are going to Grandma’s house). Pictures can serve as cues for children as to what will take place during the activity and the general sequence of the activities.
In terms of general family routines such as eating at the dinner table together, start with a short duration of sitting and use timers to help the child know how long he will have to sit. For other family activities the child may need an incentive or a reward to participate. For example, if you want the child to sit and watch a TV show with his sibling, intermittent rewards such as access to a preferred snack while he is watching the show, may motivate him to participate in the activity the next time. Over time, you can fade the snack out. In general, the more you practice family activities and make these activities very predictable, the more the child will learn about what is expected and it will become easier over time.
How can parents assist the teams they collaborate with? 
Parents are clinicians’ best allies. They can assist in many ways. For example, they can help clinicians identify important goals to work on (e.g., cooperating in haircuts, attending religious services, playing with siblings), they can help in transferring skills learned during teaching sessions to every day, real-life activities, and they can support the intervention by implementing the interventions in daily life. In addition, since they truly know their child best, they can provide essential information to team members about the child (e.g., likes, dislikes, general patterns of behavior, etc).
What is the one suggestion that you would make to a parent of a newly diagnosed child? 
Access interventions based on applied behavior analysis as soon as you can.
What would be your one suggestion to a parent whose child is ten years old? 
This is a good time to reevaluate the goals you are working on. Ask yourself, “will he need this skill when he is twenty years old?” How often will this skill be needed in daily life? How is this skill going to help him be as independent as possible?
How about for a parent of a child who is transition age? 
Identify agencies and supports in the community that your child can be part of for the long term. Identify agencies that have multiple program components such as career planning, residential planning, and recreation and leisure activities.
What is one piece of advice you would give all parents? 
No one knows your child better than you – you will be your child’s strongest and most passionate advocate. You are after all the architect of your child’s future and as you collaborate with professionals help them to learn as much as they can about your child and your vision for your child’s future.
What is one thing you would suggest that parents avoid? 
Avoid interventions that are not grounded in sound scientific research.
What are your thoughts with regards to the internet and the role it plays in the autism community? 
The internet can be a great resource to families in terms of learning about treatment, accessing services, and gaining support from other families. Unfortunately, it can also lead families down the wrong path to a treatment that does not have a lot of research supporting it. When parents google “autism and treatment” they are confronted with hundreds of options, this can be daunting for families. But, the internet allows families to learn about effective, science-based interventions such as applied behavior analysis. Rethink autism’s innovate web-based curriculum is one such example of how the internet can potentially change lives.


The Horse Boy Author Rupert Isaacson: Reading Oct 16th
October 7, 2009, 12:22 am
Filed under: autism, hippotherapy, NCEFT, Rupert Isaacson, The Horse Boy

**TIME CHANGE!** Now 12:00 – 1:30 

A free local autism and hippotherapy event is coming up next Friday. Author Rupert Isaacson will be coming to speak about his book The Horse Boy, and talk about his family’s journey to heal their son’s autism through hippotherapy. I am particularly interested in hearing what Mr. Isaacson has to say after reading this quote about him:

“He told us he didn’t want a cure for autism. He wants healing. Isaacson said that he doesn’t want his son to suffer, but that he wants him to keep his personality – that is what makes him special.”

Here’s some official information about the event, which I am hoping to attend:

The National Center for Equine Facilitated Therapy (NCEFT) of Woodside is proud to welcome Rupert Isaacson, author of the best selling book and award winning documentary film The Horse Boy on Friday October 16, 2009.

Mr. Isaacson will be reading from his book and discussing the benefits of equine assisted therapy, his son’s autism, and his family’s personal, spirtual, healing, horse-centric journey. He will be available to sign copies of his best seller after the presentation.

WHERE 
NCEFT, a non-profit Woodside Hippotherapy center
Mounted Patrol Grounds
521 Kings Mountain Road
Woodside, CA

WHEN  
Friday October 16, 2009

TIME
10:00 a.m. to 11:30 a.m.

For more information please visit our website at www.nceft.org



Rethink Autism: Behind the Scenes
September 21, 2009, 5:11 pm
Filed under: ABA therapy, autism, content production, interview, Rethink Autism, website production

If 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). 

 Needless to say, I’m hoping my family will recognize me by Thanksgiving!

We are also continuing with the Free Live Webinars this fall, and will be sure to keep you posted!



Wanted: Your Questions About Rethink Autism
September 5, 2009, 6:14 pm
Filed under: ABA therapy, autism, autism blog, Rethink Autism

In 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:

http://www.squidalicious.com/2009/08/aba-affordably-on-demand-rethink-autism.html

Since that post, people have asked me questions about accessibility with regards to costs, languages, offline populations, and general direction. I don’t have the answers myself, but the Rethink Autism team has agreed to answer such queries during a 9/21 Q&A on my blog. If you would like to submit a question, please send it to me by Thursday, 9/10.

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.



Bee Yourself, but Bee Sweet
July 31, 2009, 5:22 am
Filed under: apiary, autism, BeeKind, confidence, empathy, reading, review, t-shirts

The nice folks at Bee Tees sent each of my three kids shirts. I’m not sure if they did so because they read this blog and thought my sometimes cantankerous trio could use good behavior reminders, but the shirts are cute as hell and my kids think they’re great.

I especially appreciate a kid with autism like Leo getting to run around town with a t-shirt that declares: “Bee Yourself”! And the fact that the BeeTees folks also do custom Bee-Cause designs for fundraising. SEPTAR could certainly benefit from a design option you might easily guess.

IMG_6748.JPG

Big sister Iz swiped his shirt later on. She says she’s the one who is entering middle school in a few weeks and needs tools like a “Bee Yourself” shirt to remind her about priorities and bucking peer pressure. Her shirt actually fit him better, so I didn’t mind letting them swap.

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Mali got the same shirt design Iz was supposed to wear, “Bee Sweet.” I think it’s appropriate. Mali has full-tilt Defiant Little Sister Syndrome, so anything that reminds her to be nice is appreciated (Bee Kind, Bee Happy, and Bee Good would also be options; as her mom I consider Bee Unique self-evident).

Sweet?

Iz complained that Leo’s the one who needs the Bee Sweet shirt anyhow, as he’s been going after his little sister again. I let him wear it not because of her griping but because most eight-year-old little brothers could use such a reminder. Plus at Leo’s team meeting today, we had two main discussion points: 1) How close he’s getting to reading — we think he might be doing some real work by the end of the year, in which case shirts with one or two words on them can help reinforce reading skills, and 2) The importance of using very firm and direct language and a commanding tone of voice with him when he misbehaves, to help him understand when he is doing something that is not okay. If we want him to be sweet, we have to be firm.

Regardless, these are truly very cute shirts, and I’m glad to know about them before the holiday shopping season starts. I know quite a few kids who could use or would appreciate them. And I might just get a Bee Unique shirt for myself.

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The kids and their BeeTees in front of a bee mural at the BeeKind apiary products & supply store in Sebastopol.



Adam: The Salon Movie Review
July 30, 2009, 12:19 am
Filed under: Adam, aspergers, autism, beyond bigotry, equality, movie

I appreciated Salon movie critic Andrew O’Hehir’s unsentimental review of the new movie Adam, in which a man with Asperger’s embarks on a romantic relationships with an NT (neurotypical) girl. The following passage stands out, and demonstrates a sorely-needed respect for my son and his peers, as well the adults who share the autism spectrum with them:

Autistic and Asperger’s characters in movies are only beginning to move beyond the “Sidney Poitier phase,” in which members of previously despised or misunderstood minorities are presented as symbols, saints or seers — whose most important function is to provide other, more relatable and “normal” characters with the opportunity for moral and spiritual growth. African-Americans, gays and American Indians have already enjoyed this dubious cinematic-shaman role, which is undeniably superior to old-fashioned bigotry but a long way short of actual equality.

A long way short of actual equality, indeed. Mr. O’Hehir has my thanks.