Susan's Blog

Saturday, February 28, 2015

Asking for, needing, help

I remember once, when I was in first grade, Mrs. Newman had us write all the numbers up to 100 and beyond. I can see the lined paper in front of me, and the fat pencil with its silver rounded match-head size tip gripped in my chubby hand. I wrote the numbers, “1, 2, 3..” I thought ahead and realized that I did not know what was after 100. Mrs. Newman was mean and so I knew I could not ask her. Everyone was writing their numbers and I asked to go to the bathroom. I left the room and just hid outside the classroom door for the rest of the period, my stomach in knots, because I just did not know those numbers and there was never any help, anywhere.

I still hate numbers, math, my old school, and especially that feeling of not knowing something everyone else seems to know: that feeling of being cut off from the others, floating, looking in from the outside. Loneliness, stomach ache, desperate to go and cry.

I was lucky enough to be able to arrange my life so that I am rarely ever in that position anymore. Because I still hate to ask for help. It’s amazing to me how quickly that teary choking feeling rises up when “I don’t get it.”

Most people probably don’t like to admit they need help. I guess there is shame that gets attached to it somehow. So I wonder how someone with a disability, who often needs help, feels about this. I wonder how Nat feels about his dependency on others.

I also wonder how Nat feels about the fact that so many people around him assume he needs help. This came up recently at a medical office, a practice I knew a lot about and was considering for Nat. I liked the way they were trying to think about adults with autism, to offer services beyond childhood.

Yet immediately I had to fill out paperwork that was all about “my child.” His year in school. His classroom therapies. His siblings, anyone else “in our home.” Nat is 25. He’s been out of school for years and he does not have therapies nor does he live in our home. Okay, I filled it all out anyway. But then the nurse came and chirped “Nathaniel?” and off we went.He was asked to take off his shoes, and asked if he could take off his shoes himself. He could. “Great job, Nat!” He was asked if he could step on the little red footprints to be weighed. He was congratulated for getting that right. He had to get his blood pressure taken, “This little band is going to squeeze your arm!”

At this point I wanted to squeeze her head but I said, “Oh, Nat is fine with being in a doctor’s office,” and I said it in a trailing way that invited Nat in to the conversation. He said nothing, but I felt that at least I had opened up the circle for him.

Similarly, when we were meeting with the doctor, I got ready to work out how to ask and answer questions about Nat with Nat right there in the room with us. I want to include him, but I know that he cannot always/often access the accurate responses about his health and life. My solution is to listen to the doctor’s question about his sleep habits for example and then answer, saying, “Nat, I think you sleep well these days, do you?”  Or about diet “Nat, you like most food, right? What did you eat today for lunch?” I try to give him a way into the conversation.

The doctor was better than the nurse had been but there was still that cringing moment when she said, “Great job, Nat!” after he’d answered a question, as if he’d discovered the cure for the common cold. I wanted to ask her, “How would you feel if someone squealed, ‘Great job!’ to you like that?” But I didn’t. Instead, I tried to show her another way. At the next opportunity when Nat responded to something, I said in a normal voice, “Nat, I like the way you’re talking to us.”  Just a small noticing, then we just moved on.

It’s hard enough being unable to keep up with everyone in the room — especially when they are talking about you. But Nat doesn’t withdraw in shame like I did/do. Nat just soldiers on,  listening carefully though appearing “in his own world,” talking to himself “stereotypies,” as the doctor put it. “Expressing himself,” as I put it. Thinking his thoughts.

But nothing proves it to you until that smile of his breaks loose all of a sudden, and his eye flickers at yours for an instant. Seductive in its powerful intelligence, he is almost winking at you across the room. If you are one of the lucky ones, it will stop you cold, and you are humbled.

Friday, February 27, 2015

My TV Appearance: Vaccines/Autism

On Thursday night (2/26/15) I appeared on New England Cable News (NECN) with Dr. Ben Kruskal, Chief of Infectious Disease at Harvard Vanguard, in a show on autism and vaccines: “Measles and Misinformation.” I presented my view as a parent who at one time had been afraid to vaccinate my child, and who subsequently learned the science and the facts about the safety and necessity and civic responsibility regarding vaccination. You can watch it here.

Friday, February 20, 2015

Important Workshop, Framingham, Massachusetts

Autism Housing Pathways (AHP) will present a full day workshop on housing on Saturday, March 28th, at Advocates, 1881 Worcester Road, Framingham.

Come prepared to roll up your sleeves and work! The goal is to end the day with an idea of what benefits your family member may be eligible for, what you can afford, and what models might be applicable to your situation. We will be completing questionnaires and worksheets, as well as Section 8 applications. You will not need to share this information with anyone; it is for your own personal use.

Attendance will be capped at 15 participants. While prior attendance at one of AHP’s presentations on housing is helpful, it is not necessary.
Please RSVP to Cathy Boyle at

The day will run from 8:30-5:15. A light breakfast and lunch will be provided.

The first three families to sign up that meet the criterion of a grant Autism Housing Pathways has received from the Mass. Developmental Disabilities Council that are not already participating in the grant, may, if they choose, be placed on the waiting list for the grant. The grant criterion is that the individual with a developmental disability be unlikely to be Priority 1 for residential services through DDS at age 22. Participants in the grant will:

Receive a workbook to be completed by the individual with a disability (either independently or with assistance from a trusted individual) touching on preferred activities, lifestyle and location, and being a good neighbor. The workbook will be available in three formats: one written at an 8th grade reading level; one written at an early elementary reading level; and one comprised of picture-based social stories and sticker activities.
Upon completion of the workshop and workbook, individuals and their families will engage in a person-centered planning process, using the PATH tool. While the primary focus will be to develop a housing vision, it will be necessary to include other parts of the personal vision to assure compatibility between housing goals and other personal goals. Each plan will include a pre-meeting with the individual and/or his/her family, as appropriate, to determine whom the individual would like present when the plan is created, and to help the individual begin to reflect on his or her vision; the main meeting, where the individual and those he or she has invited create the plan; and a follow-up meeting a few months later to check in on how things are going in implementing the plan. Person-centered planning meetings will be scheduled at the convenience of the individual and his/her family, but must take place before June 20, 2015.
6 months after completion of the day-long workshop, a questionnaire will be sent to individuals and/or families to determine if a Sec. 8 voucher application has been completed, what benefits have been applied for, whether an asset development strategy has been adopted, and whether their living situation has changed.

Friday, February 13, 2015

Life College Director Job Posting: 3L Place

My friend Deborah Flaschen founded 3LPlace, a whole new concept in post 22 living, located in Somerville, Massachusetts. Their slogan is: Learning, Living, Linking Adults with Autism and other Developmental Disabilities

3L is booming with success and growth! They are now ready to hire a Director for the Life College. Here is the description of 3L and the job offering:
Somerville, MA
3LPlace is a dynamic, model community for adults with autism and other developmental
disabilities designed to empower them to live fruitful, engaged, and supported lives over
their lifespan. The 3LPlace Life College opened in November 2014. The Life College is
the first point of entry to 3LPlace. It is a two to three year residential instruction program
focussed on developing capabilities and skills needed to live a productive, satisfying,
healthy, and connected adult life.
The 3LPlace Life College is a12-month, 24 hour/7 day a week program. For the most
part, Students/Members enter throughout the year, as they turn 22 years old. Once students
complete the Transition Program, they will participate in 3LPlace’s Community
Program, or the 3LClubhouse that serves individuals over the lifespan. 3LPlace’s Life
College plans to grow at a rate of approximately six students per year, until it reaches a
maximum of 20 full-time students. Our Community Members program may grow a bit
faster as both graduating Students/Members from the Life College and Members from
outside the Life College are welcome to join. The number of Members in our Community
Members program will be approximately 120 at maximum. However our 3LClubhouse,
a part-time drop in program will enable us to engage a larger number of total participants.
The Board of Directors is seeking a highly qualified, dedicated professional to serve as
Director of the 3LPlace Life College and help it flourish in the years to come.
The 3LPlace Life College Director will be expected to provide management leadership
for the Life College community including the implementation of our innovative, multidisciplinary
Transition Curriculum. The 3LPlace Life College Director will be responsible
for coordination of this curriculum, student recruitment, as well as staff hiring, supervision,
evaluation, and development. The 3LPlace Life College Director will have an initial
staff of 11, of which 4 are direct reports. The staff at 3LPlace is expected to grow
significantly as student enrollment grows.
The 3LPlace Life College employs a Director of Developmental and Therapeutic Services
and utilizes an outside consultant to further advise on therapeutic, instructional, and
curricular elements of the Life College.
The 3LPlace Life College Director will play a key role in the evolution of 3LPlace as it
expands from a Life College for transitioning young adults into a robust community for
lifelong learning.
Successful candidates for this position must enjoy developing relationships, teaching,
mentoring, and working in a creative, flexible environment.
• Responsible for operation of 3LPlace Life College program and facilities: supervise
staff of 11 people, with 4 direct reports (staff size will grow significantly
as enrollment expands); ensure stream of potential Life College participants; supervise
student intake process which includes a thorough-going student and family
application, evaluation, and sometimes financial aid process in an effort to assure
student body diversity and best fit for 3LPlace Life College.
• Serve as chief of staff, providing direction, supervision, staff training and development
for program and support staff.
• Give vision and leadership to the strategic and day-to-day program implementation
of 3LPlace Life College.
• Provide leadership in developing program, organizational, and financial plans
with the Board of Directors and staff, and carry out plans and policies authorized
by the board.
• Prepare and monitor the annual budget for 3LPlace Life College.
• Oversee financial and quality management relationship with the Department of
Developmental Services (DDS) and other agencies of the Commonwealth of
• Ensure that the 3LPlace Board of Directors is fully informed on the Life College
and all critical factors influencing it.
• Establish sound working relationships and cooperative arrangements with
community groups and organizations.
• Represent the 3LPlace Life College to agencies, organizations, and the general
• Maintain a climate that attracts, keeps, and motivates a diverse staff of top quality
• Master’s Degree or higher in education or therapeutic discipline (i.e., social work,
counseling, occupational therapy, art therapy, etc.)
• Significant experience required preferably with young adults with developmental
• Supervisory, general and financial management, and leadership experience
required with proven track record
• Experience working with volunteer boards
• Strong communication, conflict resolution, and decision making skills
• Ability to work in a flexible, ever changing environment
Compensation (plus benefits) commensurate with experience of applicant and consistent
with that offered by growing, vibrant non-profit entities.
Deborah Flaschen
President, 3LPlace Inc.

Wednesday, February 11, 2015

Vaccines Save Lives

Here is my piece for NPR’s WBUR/Cognoscenti column, about vaccines and autism. I tried to take a nuanced and reasoned approach. I ain’t no troll. But truly: vaccines save lives.

Sunday, February 8, 2015

Vaccination and Autism

I’m going to be live on NECN New England Cable Network News at 6pm EST Monday February 9. It streams at as well. The topic is the safety of vaccine. I am absolutely in favor of people getting vaccinated. It saves lives. It does not cause autism. In every medical intervention, there is never 100% good response. There is always risk. But the risk of spreading measles and destroying herd immunity is definite. Autism is hard, death by disease is far worse.

Saturday, February 7, 2015

Nat’s longest conversation

…was on Facebook with his Aunt Laura. Here is the transcript, I copied it from his Facebook Messenger page:

(Laura): Hi Nat, I’m at work. What are you doing today?

(Nat): basket ball

(Laura): have fun!  Are you going to jplicks?
(Nat): ice cream hare

(Laura): Oh great!
(Nat): good

(Laura): what are you doing tomorrow?
(Nat): dad jplcks
drive jpliks

(Laura): I knew you would go there!  Why can’t you walk?
(Nat): snow

(Laura): Oh of course.  What’s your favorite ice cream flavor?
(Nat): chlket

(Laura): How is John?
(Nat): good

(Laura): Do you still like the apartment?
(Nat): like apartment

(Laura): Has it been hard to work shopping carts with the snow and cold?
(Nat): yes

(Laura): Do you ever work other jobs at Shaws in the bad weather?
(Nat): baskt

(Laura): what job is that?
(Nat:) clakt basket

(Laura): Oh I see.  Which job do you like better?
(Nat): basket

(Laura): Why do you like it better?
(Nat): ok hard
[nat left]

(Laura): Shopping carts are harder?
ok bye?!

[nat comes back]: good bye