Planning for the Transition from IDEA Protection to Adulthood

Daniel Dage specialed.wordpress.com Note from the editors for readers from outside of the United States: In the US, educational rights for students with disabilities are covered by the federal Individuals with Disabilities Education Act (IDEA). Another piece of legislation, the Americans with Disabilities Act (ADA) also has educational implications. A third piece of legislation, the Family Education Rights and Protection Act (FERPA) transfers privacy rights to students when they reach the age of 18, unless the student grants rights to parents. In the US, the preferred term for substantial limitations in cognitive and adaptive functioning is “intellectual disability”, while “learning disability” is reserved for unexpected difficulty in acquiring specific academic skills. Elsewhere in the English-speaking word, “learning disability” is used in referring to people who have substantial limitations in adaptive and cognitive function. There is widely understood to be a continuum of disability (both in physical and cognitive areas): mild,…

Penny Foolish and Pound Cruel

Susan Senator www.susansenator.com A new era has begun for me. All the past years I’ve been going to these state hearings on proposed cuts to special education in Massachusetts. I’ve been one parent out of many parents, professionals, and students protesting cuts to programs that have never been fully funded to begin with. But today I testified at a state hearing on Massachusetts’ proposed cuts to the Adult Foster Care program (AFC), the first time I’ve spoken as a parent on Nat’s behalf — for his adulthood. I’ve written recently about the AFC program, which is funded through MassHealth and Medicaid, about how this program is part of the new movement to keep those with disabilities in their communities and homes, rather than sending them to nursing homes and institutions; The part AFC plays is that it provides a small stipend to a caregiver (usually a parent, a foster parent,…

On Snowstorms and Planning for the Future

Elise aka aspergers2mom  asd2mom.blogspot.com As I sit here at my desk and stare out at our sixth major snow storm since Christmas, I have been contemplating our life’s next adventure: my son HSB’s entrance into college. And just the other day hubby — that Wise Old Sage — reminded me of some things he feels are important, things he wants parents of young children on the autism spectrum to know: Trust your instinct. If things are not right, they are not right. Whether at school, or just in general. Don’t listen when the school tells you how great your child is doing socially, academically, or emotionally. Watch what is really going on, don’t just take their word for it. Children make improvements, sure, but are they really improvements that would allow them to be independent when that yellow bus stops coming to your door? The schools also provide terrific support,…

Asperger’s Syndrome is Real, Even When It’s Hard to See

Christina Goodney Bailey My son was diagnosed with Asperger’s syndrome when he was four. The first time someone suggested that Sam might have autism was just after his second birthday. Between those two milestones, we saw two pediatricians, a developmental pediatrician, and a speech pathologist, with inconclusive results. For two years, my husband and I rode a seesaw of emotions, playing “Does He or Doesn’t He Have Autism.” When Sam spontaneously shared his blueberries with a playmate, we breathed easier. When he spun a rattle repeatedly, we worried.  When Sam imitated me sweeping, I called my husband triumphantly.  When he had a meltdown on the playground after another child attempted to interact with him, I left quickly and did not mention the incident to anyone. We combed the Internet, reading countless checklists designed to alert parents to behaviors that might point to autism.  We were confused, as our son seemed…

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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Autistic Fixation Shapes Photographer’s Unique Images

Scott Standifer Disability Policy and Studies Office School of Health Professions University of Missouri dps.missouri.edu/Autism.html standifers@missouri.edu All images copyright Luna The Moon Girl, used with permission. The photographs of an emerging French photographer depict her fascination with reflections, a feature of her autism. The photographer, who uses the online name “Luna” to protect her privacy, has been quietly posting her haunting, evocative images in the Flickr photo sharing website for the last two years. With oddly vibrant colors, they show entrancing and disorienting scenes of overlapping images which trap one’s eye in layers of meaning. Like most people with autism, Luna has several fixations — topics which intensely fascinate her and dominate her thoughts. For Luna, these include cats, reflections, and vegan cooking. All three show up in her photographs, but her most moving images involve the reflections she finds everywhere. She explains that, for her, “When I’m shooting, I…

For Physicians: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays

Dr_Som www.pensivepediatrician.com/ This is a follow up to a previous post, Who Wins When Parents Spank? at the Pensive Pediatrician I certainly do not mean to trivialize the behavior issues that erupt as typical children develop, but the problems of atypical kids are more difficult and less likely to be fully addressed by general pediatricians, family practice physicians, and society at large. The 10 things pediatricians and family practice physicians can do to help families affected by autism or other developmental delays in their in their practices: 1. Understand the ABCs of behavior A= Antecedent = What happened immediately before the behavior? B= Behavior = A description of the behavior (not “he got angry”) C= Consequences = How did the parent or teacher respond and/or what kind of reinforcement did the child receive? For example, when David, my autistic son, was three, every time I fastened or unfastened his car…

Bullying and Special Needs: Walk a Mile in Their Shoes

Shannon Des Roches Rosa www.thinkingautismguide.com www.squidalicious.com According to Tim Shriver, Chairman and CEO of the Special Olympics, FX is currently the only TV network that bans the word “retard.” Bullying of people with special needs remains entrenched, and insidious. According to AbilityPath.org, “Some reports estimate that nearly 85 percent of children with special needs experience bullying.” But it doesn’t need to stay that way. In partnership with the Special Olympics and Best Buddies, Abilitypath.org is launching a nationwide “Disable Bullying” campaign that will “engage a broad coalition of parents, educators, activists and policymakers to prevent and combat behavior that is widespread but has until now not been clearly documented.” Glee’s Lauren Potter and her mother Robin Sinkhorn are leading the call for action: AbilityPath has created Walk a Mile in Their Shoes, a toolkit-rich campaign report and guide [PDF]: AbilityPath.org is an online hub and special needs community for parents…

Roots and Wings

Liane Kupferberg Carter www.huffingtonpost.com/liane-kupferberg-carter Editors’ note: While some of the referenced documents discuss parents who seek “cures” for their children with autism, it is our opinion that overall Autism Speaks advises those parents to seek evidence-based supports and therapies. If you ask our son Mickey what he might like to be when he grows up, he will probably say, “A librarian. Or a Pokemon Master!” There aren’t too many jobs for a crackerjack Nintendo player, but Mickey is learning other skills. At 18, he attends the Comprehensive Support Program at our local public high school. But no one program can ever be fully comprehensive. We also run a home-based program to address self-help goals, and send him three mornings a week to a vocational and life skills program at an A.B.A.-based learning center. At home and at both his schools, we work on such tasks as making a grocery list…