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Interview: iAdvocate’s Alan Foley on Empowering Parents of Children in Special Education

Syracuse University professor Alan Foley developed iAdvocate, a free iPhone app that helps parents of school-age children with special needs “share and develop specific strategies with parents for working collaboratively with a school team to improve their children’s education.” We’re grateful to Dr. Foley for talking with us about how iAdvocate can help our families, his development process, and how his app is setting a advocacy precedent. We recommend reading Syracuse University Magazine’s excellent Spring 2011 Access and Opportunity article for more information about Dr. Foley’s work. Your app is remarkable, and is filling a role a lot of people hadn’t anticipated — when it comes to autism and other developmental disabilities that can have a language component, folks tend to focus on iPods and iPads in an AAC (Augmentative and Alternative Communication) capacity. Apps like iAdvocate clearly demonstrate that these devices can be so much more. What inspired you…

Interview: Dana Commandatore of Rethinking Autism

Autism activist Dana Commandatore of RethinkingAutism.com is the mother of an autistic boy. She hopes for a better quality of life for autistic people and their families. Dana says, “Through acceptance and understanding we can make progress.” We agree, which is why we asked to interview her about her site, and the provocative and much-needed autism videos she creates. From the RethinkingAutism.com home page: All too often in the world of autism, celebrity and sex appeal are used to promote pseudo-science and personal agendas. RethinkingAutism.com wants to change minds, change the current media conversation and help give autistic people a more prominent voice in the conversation. Up to this point, certain celebrities and some parents of autistic children have dominated the media with their miracle cures and unsubstantiated theories on causation. This exploits autistic people, their family members and the public. Please join us. Share the videos, read the blog…

An Interview with Carol Greenburg, Autism Women’s Network Regional Director

I met Carol Greenburg last summer at the BlogHer conference in New York. Her confidence, humor, and commentary made her instantly appealing, but her kindness, fierce intelligence, and advocacy skills make knowing her both a luxury and a necessity. She is the executive director of Brooklyn Special Needs Consulting, and serves as the East Coast Regional Director of the Autism Women’s Network. She joined the Thinking Person’s Guide to Autism’s editorial board in January, where she adds her depth of knowledge as an advocate, parent of a special needs child, and an adult on the spectrum. ~Jennifer I’ve joked with you before that you really “have it all.” You’re an adult with Asperger’s syndrome, the mother of an autistic child, and an advocate in the autism community. Do you have trouble switching hats? Do you compartmentalize?  I try to compartmentalize. I think that’s the only way to really do it.…

What Am I Doing Here?

Liz Ditz I Speak of Dreams Academic Remediation I don’t have autism. I don’t have a child or a sibling or a parent with autism. What am I doing here? (Personally, I find that line of thought contemptible: that only those directly affected by autism should be thinking, writing, or advocating for people with autism. But that’s the subject of another post.) How did I become an advocate for people with autism? It’s a long and winding story that isn’t unique to me. I started kindergarten in the mid-1950s, almost two decades before federal law required that children with disabilities have the same access to public education as their non-disabled peers. What did that mean, though, for families and for schoolchildren? Back then, children with cognitive disabilities were either kept at home, with very little support for their parents in the community, or were institutionalized. It was common for families…

Support the Autism Science Foundation

Dr. Paul Offit is the Chief of Pediatric Infectious Diseases at Children’s Hospital of Philadelphia, and a relentless advocate for children’s health and childhood vaccination. We interviewed Dr. Offit several weeks ago here on The Thinking Person’s Guide to Autism, and in a continuing effort to support him with the release of his new book, we are encouraging people to buy the book via Amazon on Monday, February 21, 2011. A frenzy of book-buying could push the title into Amazon’s Hot New Release list, raising publicity about the importance and safety of vaccines. Even if you already have a copy of the book, consider purchasing another copy and donating a book to your local public or high school, a health education teacher, or your child’s pediatrician. Hard cover: Deadly Choices: How the Anti-Vaccine Movement Threatens Us All ($17.11) and the Kindle edition: Deadly Choices on Kindle ($9.99) (Dr. Offit is…

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Carol Greenburg Joins as TPGA Editor

We are so pleased to announce an addition to the editorial team at The Thinking Person’s Guide to Autism; Carol A. Greenburg will join our efforts here as an additional resource and editor. We are honored to have her rich experience and important perspective as part of our team.  We’re thrilled she was able to add TPGA to her very active life, and our community is lucky to have such a great advocate. Please join us in welcoming Carol. **** Carol Greenburg, executive director of Brooklyn Special Needs Consulting, is  a special education consultant and lay advocate in private practice serving the five boroughs of NYC and beyond. Her unique perspective as an adult with Aspergers Syndrome and as the mother of a severely language-delayed  autistic child, informs all of her work. In September, she was appointed the East Coast Regional Director of Autism Women’s Network (www.autismwomensnetwork.com) A frequent speaker at…

MIT

Jess at Diary of a Mom www.adiaryofamom.wordpress.com A couple of years ago, I had a pretty incredible opportunity. I’d very recently found my voice as an advocate for my beautiful daughter, then just five years old, and so many like her who struggle daily with the challenges of autism. I had spoken publicly just once before, yet I found myself being asked to guest-lecture to a group of prospective neuro-psychs at MIT. I was terrified, but I knew there was no possibility of saying no. What follows is the post that I wrote about the experience. I share it here for a couple of reasons. Firstly, because I’d be hard-pressed to believe that I am the only one who needs the reminder that as parents, our experiences with our children are just as valid and valuable as the knowledge gained by scientists in a lab – no matter how esteemed…

And Thoughts are Turning Back to School

Liz Ditz http://lizditz.typepad.com/i_speak_of_dreams/ http://lizditz.typepad.com/academic_remediation/ I know we said a break, but… Today, Gary Brannigan PhD and Howard Margolis PhD (the authors of a great book, Reading Disabilities: Beating the Odds) published a blog post Stonewalling the IEP. While Brannigan and Margolis are writing about specifically reading issues, their advice can be generalized to all kinds of issues. The blog post is particularly about “Present Levels of Performance” and how many IEP teams skimp this section. Brannigan and Margolis suggest there are four reasons: The school members of the IEP Team don’t know how to develop a Present Levels section that’s complete, meaningful, and functional. The district’s evaluations failed to supplement norm-referenced data from standardized tests with instructionally-relevant functional information. School members of your child’s IEP Team have overwhelming caseloads. (Rarely): To wear parents out and send a message to other parents: “Be satisfied with what we give you.” Brannigan and…

Advocacy 101: How to Write an Effective Letter

Caitlin Wray www.welcome-to-normal.com Odds are at some point in your role as your child’s advocate, you will need to write a letter to the powers that be. A masterfully crafted letter can be an incredibly powerful weapon in an advocate’s arsenal, but it’s often not an intuitive process; there are unwritten rules and unspoken expectations that need to be addressed, if you’re to achieve maximum effectiveness. I’ve spent much of my professional — and personal — life drafting letters that are designed to effect meaningful changes; it’s one of my favourite things to do (yes, I’m geeky that way). To help you find  effective ways to word your own letters, here are some suggestions, along with examples from letters I’ve written as my son’s advocate: First make sure you are writing to the most useful and appropriate person. Do your research before deciding to whom you will address the letter,…

The “R” Word Revisited

Brian R. King, LCSW spectrummentor.com Recent headlines about the epidemic of bullying, unfortunately, point to school systems overall that appear either indifferent to bullying, referring to it in some cases as “a right of passage that children must endure as a means of building character” (one school administrator actually said this in an IEP meeting I attended), or they minimize it as a misunderstanding. Others exercise willful ignorance under the guise that “We didn’t see it”– as though the bully is supposed to say, “Teacher, looky here! I’m going to treat Johnny like crap now.” Give me a break! If a child bullies another student out of the view of a teacher, it’s still bullying and not an opportunity to evade responsibility because the bully is savvy enough to know when you aren’t looking. Let me be clear, bullying is not a simple problem of the playground tough guy establishing…