Alternative to Group Home: Shared Living
In Massachusetts there is a program called Shared Living, which is a good way to create an independent living set-up for your loved one with a fairly significant developmental disability. Shared Living is more of a community model, a more Self-Determined, Person-Centered model, whereas Group Homes can feel a little more isolated, perhaps more institutional, and are much more costly to sustain. Shared Living is basically a caregiver living with the person with the disability, together, in the caregiver’s apartment. The caregiver gets a stipend from which he pays rent and the disabled person contributes to the rent fro...
Source: Susan's Blog - March 20, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Small But Huge Innovation
Great story in the New York Times about a man who helps train folks with autism in employment. Jay Goltz, writer for the New York Times, desribes how Dave Geslak owns a small business, “Exercise Connection, a company in Chicago that works with children who have autism. Dave has discovered that the structure and routine that his students learn from exercise build confidence, which can be a gateway to getting a job.” (NYTimes, “On Hiring and Autism,” March 19, 2014). Read the story here and then think about the many less-known routes there are to the goal of employment and our guys. (Source: Susan's Blog)
Source: Susan's Blog - March 19, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Why I Should Never Die
I’ve been wondering lately how to become a ghost after I die. I am not looking to die — not at all. In fact the opposite is true. Of course most of us are at least reluctant to die, even afraid to die. My fear goes way beyond the usual, however, because I have a severely autistic son who is 24 and even though I have a wonderful husband I can’t imagine he’ll be around the rest of my son’s lifetime. I also have two other terrific sons; and although I do think will one day be able to provide some oversight for Nat, they are already beginning to grow their own complicated lives. And they were not ...
Source: Susan's Blog - March 13, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized nocomments Source Type: blogs
Self-soothing
I have just discovered something kind of important (to me). Almost every day at some point I start getting anxious but also yawning. I almost start to panic — I don’t know why. I feel like I want to connect more with people but at the same time I can’t face that. Some days this feeling overtakes me to the point where I can’t work, I can barely function other than to do chores like laundry and cleaning. I start to get sad about this feeling. Why does this keep happening, I think. What is wrong with me? Nothing is wrong — in fact many things are very right and good – and yet I cannot fee...
Source: Susan's Blog - March 12, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
If We Didn’t Have a Hammer
My friend and fellow autism advocate Michael Forbes Wilcox has a fascinating mind that many of my readers would like. Michael was diagnosed with autism/Asperger’s in his 60′s, and with that diagnosis, found a tremendous sense of relief. I hope I’m getting this biographical bit right but what I think he told me is that so much that troubled him about his interactions with others, throughout his life, so much of his difference, was now explained, and so getting the diagnosis was a watershed experience for him. Michael has never accepted autism as any kind of disorder or illness, but rather, as a clarifica...
Source: Susan's Blog - March 10, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Getting Others To See
Sometimes it feels like it’s all autism, all the time for me. Most of the time that takes the shape of advocacy work of one sort or another. Yesterday I was filmed along with NY Times Pulitzer Prize-winning journalist Amy Harmon for the PBS show America Reframed in a discussion about Turning 22 and the documentary Rachel Is. Rachel Is takes us into the 21st year in the life of intellectually challenged Rachel Glynn as she turns 22, and features her mom Jane, and her sister Charlotte (who directed the movie). The movie lays out very poignantly and honestly (sometimes cringingly so) a family’s struggle with not k...
Source: Susan's Blog - March 8, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
My Housing Workshop
If you live in Metro Boston, come on down!
A Full Life Ahead: What Makes A House A Home
What: Advocates is joining forces with Massachusetts Families Organizing For Change to present their popular event series, A Full Life Ahead, at our Life Skills & Learning Center in Ashland, Mass. 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.
Join us for our first workshop together, “A Full Life Ahead: What Makes a House a Home?” Parents, Robin Kantrowitz and Susan Senator, will discuss...
Source: Susan's Blog - March 2, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Important Massachusetts Legislation
Here it is. The legislation that will help you, family members and self advocates in Massachusetts who either have children with developmental disabilities or are developmentally disabled themselves, particularly those aging into adulthood. If you live in Massachusetts, you must cut and paste this letter into an email to your your legislators. This is how it is done. You cannot sit by and let others do it for you, or do nothing. You have to be an advocate, even if you don’t want to. And Gary Blumenthal of the ADDP has made it so easy in this draft:
Open Letter to Massachusetts House Members
Dear Representative,
Peopl...
Source: Susan's Blog - February 27, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Good Autism Housing Takes Good Legislation: H.3364
Today at the Massachusetts State House there was a hearing on bill H. 3364, “An Act to promote housing creation for persons with disabilities.” The hearing room was full — although some of the audience were there for a different bill — and I was heartened by the size of the group. We were all parents but most also had a title and an autism organization they were representing. I was just me. The Autism Commission and Asperger’s Association of New England were represented, as was Autism Housing Pathways. Former State Rep Barbara L’Italien was there, and she is now (thankfully) running for ...
Source: Susan's Blog - February 26, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Autism Mommy Swami: Planning Ahead for Housing
Dear Autism Mommy Swami:
How do you get started on finding a place for your adult child to live? How do you begin to feel comfortable that he will be treated well? Is this covered by Medicaid? My son is only 11 but I know we will have to be making these decision and am wondering how early we have to start looking.
Is your son still taking medication for anger issues? Is this a life-long issue?
Thank you,
Thinking Ahead Mom
Dear Thinking Ahead Mom:
1) Regarding an adult child’s housing, your best bet is to apply to your Department of Developmental Services now and see if you can get him in the system for funding. Th...
Source: Susan's Blog - February 18, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
I’d Like To Teach the World To Stim — in Perfect Harmony
The other day I had an email from an NYU sophomore asking if she could interview me for her Oral History class project. She wanted to know about mothering a child with autism. I told her that I’d love to, but that my son was now 24. She said that would be great anyway. She was down in New York, however, so we were not sure at that time how to proceed.
Then yesterday I was contacted by her project partner, Chris, who happened to be in Boston visiting a friend. Chris and I agreed to meet at my favorite coffee shop in town, Peet’s. Nat was home for the weekend, so I asked him to come with me; the interview was par...
Source: Susan's Blog - February 16, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Them And “Her”
Probably one of the biggest joys I’ve found in being a mother is my children’s ability to surprise me. I experienced this while talking to my middle son Max the other day about the movie Her. Max and I were dissecting the film, because he is a film major at NYU’s Tisch School, and I always want to hear his take on the director and cinematographer. At one point in the conversation I told Max that his brother Ben, who is 15, had come along and had a real appreciation for the technology depicted in the film.
Max was not at all surprised by how Ben liked Her. He and Ben are four years apart but they have ...
Source: Susan's Blog - February 11, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
What I Would/Should Ask Nat
I often feel troubled by not understanding Nat and his state of mind. I do not believe in my heart that what you see is always what you get. I wish I could. People say, “If he doesn’t seem unhappy, he’s not.” Yes, but no. Sometimes I am not satisfied with that. So here is what I want to ask him:
1) Do you understand what I say when I speak normally, that is, quickly, using metaphor?
2) If so, do you feel bad when I adapt what I’m saying to a simpler language?
3) Do you know that I respect you, no matter how I talk to you?
4) Are you lonely?
5) Do you feel left out when everyone around you is talking? Or maybe y...
Source: Susan's Blog - February 4, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Ode to Rock Star and Autistic Man, Scott Lentine
I have written about poet, autistic, and fellow advocacy traveler Scott Lentine, but I am moved to write again. I heard Scott on the radio today, and I was smiling ear to ear. Get to know Scott, he is a force to reckon with. Scott works as an administrative assistant in a law firm, as well as a public policy intern at the Arc of Massachusetts, but I see this guy as being a fantastic publicist and agent one day, or perhaps President — if we are lucky. Scott knows how to capture the attention of the public innately, and how to get his message across. Lucky for us, that message is exactly what we all need to here: autis...
Source: Susan's Blog - February 1, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Welcome to the Autistic Community
The Arc of the US’s Autism Now Center has partnered with the Autism Self-Advocacy Network (ASAN) and has written an excellent booklet, “Welcome to the Autistic Community!” This is a positive-language, informative, accessible document with clear illustrations, that gives a newly-diagnosed autistic person a handle on what autism might mean for him/her. There are chapters like “Am I Okay?” and “Where are the other people like me?” and “What are my rights?” The booklet also covers the topic of differently-developing brains, sensory overload, and self-esteem.
My one piece of...
Source: Susan's Blog - February 1, 2014 Category: Autism Authors: Susan Senator Tags: Uncategorized Source Type: blogs
