I wrote an essay, published by WBUR/NPR, related to the new findings that autism may be detectable as early as 18 months of age. I’m not convinced that this is the best form of research we could pursue. Autism resources are frontloaded into the early childhood years. As Nat’s mom, I gotta ask: “What about the grown-ups, and all that they need? What works for them?”
Part of you pours out of me in these lines from time to time.
My husband Ned just had part of his thyroid removed — a benign nodule had swollen up there — and he has written very eloquently about it. This was the first kind of surgery we have experienced as a couple (together for 30 + years) and even though the cutting and recovery happened to him, we were steeped in the fear and waiting together. We’ve been through autism and other woes, and I’m happy to the depths of my soul that we seem to be stronger than ever. I’m beyond grateful to God and fate and the randomness of the Universe that put me together with this wonderful, unique man; that he is alive and I can be with him for more time. I was head over heels in love with him way back at Penn in 1981, and in 2013 I still am, even more.
This was the man who was instrumental in getting Special Olympics off the ground. Watch this beautiful video and put Special Olympics on your list of worthwhile charities this holiday season.https://www.youtube.com/watch?v=UANJfuEWckM&feature=youtu.be
Massachusetts Families Organizing for Change (MFOFC)
in partnership with
Massachusetts Down Syndrome Congress (MDSC)
“A Full Life Ahead” ~ a series of monthly workshops for parents and guardians
of young adults with a disability. The series focuses on transition, employment, housing, friendships and other topics that will lead to interdependent, full lives
in the community for young adults with disabilities.
Wednesday, November 20, 2013
What Makes a House a Home?
7:00 – 9:00 PM
20 Burlington Mall Road — Suite 261
Burlington, MA 01803
» » Information on Housing Connections ~ Chris Williams« «
Parents, Robin Kantrowitz and Susan Senator will discuss the ups and downs, challenges and successes in setting up and maintaining living arrangements for their sons. Family dynamics, housemates, staffing, cultures and customs all play a role in what you need to consider when putting the pieces together.
Jeff Keilson, Advocates Inc., will discuss the variety of options, including Adult Family Care, Shared Living, group home, guidelines and best practices, issues between families, and collaboration as well as issues that arise between families and the provider agency. Panel will discuss the ongoing journey to ensure quality of life for their loved ones.
Please RSVP to firstname.lastname@example.org Space is limited to 50!
Mark your Calendar – Upcoming AFLA series workshops
? January 29, 2014 – Community Mapping ? March 26, 2014 ? April 30, 2014
781 665 5179
I am writing a fourth book, my third autism experience book. The working title is: “Autism Adulthood: Living a Fulfilled Life on the Autism Spectrum.” The book is to be largely based on interviews with people up and down the spectrum and their families. I will weave in my own narrative with Nat’s experience throughout the book. I decided to try interviewing Nat. I typed the questions and read each one to him, one at a time, with a lot of silent waiting so that he could come up with the answers. He would then say his answers and start typing. He would hesitate, and I would say, “Go ahead, Nat, type it.” And he would. Here is the transcript to the interview:
Interview with Nat
Do you work?
What is your job
Job is like caregs shas
Do you like what you do?
Do like do
Do you have friends that you do things with?
Do you exercise?
Exercise do tradml
What do you like to do at your home?
I am on a Task Force headed up by State Rep Tom Sannicandro and Dr. Dana Mohler-Faria, President of Bridgewater State University. The Task Force is having four hearings (the first of which was today, sorry to be late with this announcement), in different parts of Massachusetts, to hear testimony from the public about the need for and matters pertaining to the inclusion of people with developmental disabilities in Massachusetts state colleges and community colleges. Here is a press release to explain in-depth and for all upcoming hearings:
Higher Education Task Force Focuses on Including Students with Disabilities
Higher Ed administrators and disability advocates prepare to tour state for public input
FOR IMMEDIATE RELEASE Contact:
October 8th, 2013 Ross Richmond (617) 722-2013
(October 8—STATEHOUSE) Rep. Tom Sannicandro (D-Ashland) announced Tuesday the formation of a Task Force on College Inclusion for Students with Intellectual/Developmental Disabilities. The Task Force will solicit feedback and comments from the public, including administrators, teachers, students, parents, and others about expanding opportunities for students with disabilities to be educated alongside non-disabled peers in colleges and universities. It has set dates for four public meetings to take place across the state
In the end, the Task Force will release a report on its findings, as well as legislative recommendations.
“Bringing students with intellectual and developmental disabilities into our colleges and universities is the next step in the goal of universal inclusion of this population in our society,” Rep. Sannicandro, Chairman of the Joint Committee on Higher Education, said. “We have come far in terms of how we include people with disabilities in our community and we are saying today that the Commonwealth is ready to do more in higher education.”
“If a student has a desire and drive to attain a college degree, no obstacle should be in their way to achieving their dreams,” Senator Moore (D-Millbury) said. “Studies have shown inclusive higher education settings create better outcomes for Intellectual/Developmentally Disabled student, including increased employment opportunities and fewer supports needed later in life. The Commonwealth must continue to ensure that a college education remains accessible, regardless of a disability. We look forward to hearing ideas from people across the state to inform our recommendations to the legislature to better include students with disabilities in our higher education institutions.”
Inclusion of students with disabilities in higher education has many benefits including professional development and employment.
Two years ago, Congress authorized funding for the formation of a program called Transition and Postsecondary Education Programs for Students with Intellectual Disability (TPSIDs) to create inclusive opportunities for students with disabilities in higher education. In just two years, 792 students enrolled in 42 participating colleges. Of those enrolled, 236 held jobs, 82 percent of which paid at or above the minimum wage. Prior to the TPSID program, 45 percent of those students had never held a paying job.
Many students who did not have access to TPSID instead participated in segregated work environments, often at sub-minimum wage, and rely more heavily on public assistance.
The Task Force seeks to expand inclusive college opportunities, allowing students to reach their full academic and employment potential.
The Task Force is made up of 15 members:
Legislators include: Rep. Tom Sannicandro, Chair of the Joint Committee on Higher Education, Sen. Michael Moore, Chair of the Joint Committee on Higher Education, Rep. Kim Ferguson, Member of the Joint Committee on Children, Families and Persons with Disabilities.
Higher education administrators and professionals include: Kumble Subbaswamy, Chancellor of University of Massachusetts Amherst, Dana Mohler-Faria, President of Bridgewater State University, Charles Desmond, Chair of the Board of Higher Ed, Richard Doherty, President of the Association of Independent Colleges and Universities in Massachusetts (AICUM), Michael Stein, Executive Director at Harvard Law School Project on Disability, Debra Hart, Education Coordinator at the Institute for Community Inclusion at University of Massachusetts Boston.
Department of Disabilities Services includes: Commissioner Elin Howe.
Disability advocates include: James Brett, President and CEO of the New England Council and Chairman of the Governor’s Commission on Intellectual Disability, Julia Landau, Senior Project Director at Mass Advocates for Children, Susan Senator, Disability Author and Director of Outreach at the Community College Consortium for Autism and Intellectual Disabilities, Deborah Smith-Pressley, CEO and Founder of Garrett-Pressley Autism Resource Center.
Student representation includes: Brian Heffernan, Student at MassBay Community College.
Dates of the public hearings:
Friday, November 1st, 10:30-12:30AM, Bridgewater State University, 66 Hooper St., Burnell 132A, Bridgewater, MA 02325
Friday, November 8th, 12-2PM, Harvard University, Harvard Law School Project on Disability, Austin Hall 304, Cambridge, MA 02138
Friday, November 15th, 3-5PM, Quinsigamond Community College, 670 W. Boylston St., HLC Building, Room 109A&B, Worcester, MA 01606
Friday, November 22th, 9-11AM, University of Massachusetts Amherst, Lincoln Campus Center, 1 Campus Center Way, Room 163C, Amherst, MA 0100