...Unfortunately, it’s a common experience for most autism
parents, at one time or another, to feel humiliated by strangers.
Or, if it is not humiliation, then we might experience just
plain lack of understanding. Paulette, who calls herself my
twin sister in Alabama, told me of the challenges she faces
going into public with her daughter Punkin. “Punkin and I
have had some good experiences and some bad experiences.
I really understand other autism parents when they say how
proud they are just to be able to go places and it’s normal.
I am invited to go and see The Nutcracker ballet for Christmas.
I have decided that Punkin will not be going. Everyone
wants to know why I am not taking her when my best
friend is taking her girls. I find myself getting defensive.” Paulette
has a long memory of her experiences out in the world
with Punkin, and it makes her think twice about going any-
where with her, just like I still do with Nat. “This summer,”
she said, “when it was just the two of us and the meltdowns
were happening on a regular basis, I couldn’t get anybody to
help me—but they are still quick to criticize my decision not
to take her to the ballet.”
Paulette continues, “They just don’t know how much I
would love to take her, but this is going to be a trip that I take
just for me. Most of the time when we go places, I say, ‘This
is for Punkin,’ and if I have to spend a little time in the restroom
calming her down, it’s OK because I am doing it for
her. But when we get up because she needs to go somewhere
else to calm down, nobody gets up and says, ‘Do you need
any help?’ Yet they still want to criticize.”
...Probably the most helpful happiness strategy for an autism
parent is finding lifelines. Lifelines are the people in our lives,
outside of our spouses or partners, who truly understand our
children. Lifelines are the people who “get it,” as many autism
parents say. You can leave your kid with a lifeline for a period
of time—an hour, a weekend, it can vary—and you don’t
have to worry about it. These are the folks who let us escape
and rejuvenate. Lifelines help our children, too, because they
provide them with bonding experiences beyond Mom and
Dad and help them to develop more independence...
brookline booksmith 279 Harvard St. Brookline MA 02446 (617) 566-6660 | |||||
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| >>>march | |||||
![]() | Saturday, March 6, 5pm Judith Warner (Perfect Madness; the columnist of the New York Times’ “Domestic Disturbances”) spoke with a cross section of parents, psychologists, psychiatrists, pediatricians, researchers, and therapists over the course of five years to find out how meds are affecting our children. The enlightening result is a wake-up call. | ||||
![]() | Tuesday, March 9th at 7:30pm Nancy Kehoe is a nun and psychology clinician. In her first book, she makes a compelling argument for faith as a means to make decisions and order one’s life. With great empathy, she shares stories of the troubled people she has helped and writes of the way religious feeling has shaped her own choices. “Remarkable,” says Cokie Roberts. | ||||
![]() | Wednesday, March 10, 7pm “Sam Lipsyte can get blood out of a stone” – Edmund White. If the Booksmith has prayers, they’ve been answered: the funniest writer in America is coming to Brookline. Sam Lipsyte (Home Land, Venus Drive) has written his third novel, The Ask, a screed against university development, capitalism, artistic leanings, and the middle classes. Après Lipsyte, le déluge. | ||||
![]() | Thursday, March 11, 6pm A discussion with the co-creator of The Spiderwick Chronicles, the person behind The Mortal Instruments and the author of Pretty Monsters? Don’t mind if we do! The Booksmith presents a YA extravaganza to benefit Franciscan Hospital for Children. All ticket sales and 20% of their book sales will be donated to the hospital. Email your questions for the authors to hollycassandrakelly@gmail.com. Click here for additional information! | ||||
![]() | Monday, March 15, 7pm Have you ever wanted to write nonfiction? Learn how at the Booksmith’s first-ever writing workshop! Billerica-based writing coach Sherry Ellis (Now Write, Illuminating Fiction) celebrates the release of her latest writing guide, Now Write! Nonfiction with a writing class. Joining her will be fellow teachers Hershman and Cohen. During this workshop you will have the opportunity to start some of the writing exercises included in the book. | ||||
![]() | Wednesday, March 17, 7pm Follow Stanford professor Elif Batuman as she visits Tolstoy's estate to investigate a possible murder and loses Isaac Babel's family at the airport. Batuman (Harper’s, The New Yorker, LRB and n+1) has literally walked a mile in the footsteps of her heroes in a sharp, funny, personal literary history that takes us from California to the Caucasus. | ||||
![]() | Thursday, March 18, 7pm An Evening with Ugly Duckling Presse Jon Cotner and Andy Fitch - Ten Walks/Two Talks With Damon Krukowski and Matvei Yankelevich Ugly Duckling is a Brooklyn-based nonprofit art and publishing collective. Join them as they celebrate the release of Ten Walks/Two Talks, a book Time Out describes as “philosophical, formally innovative and fascinating." Also appearing are Damon Krukowski (The Memory Theater Burned, of bands Galaxie 500 & Damon and Naomi) and Matvei Yankelevich (Boris by the Sea), one of the press’s founders. | ||||
![]() | Friday, March 19, 7pm The Breakwater Reading Series features fiction, non-fiction and poetry by writers from UMass-Boston and Emerson College MFA programs. Join us on the third Friday each month to hear these extraordinary emerging voices. For more information, please contact Angela: breakwater.reading@gmail.com | ||||
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![]() | Wednesday, March 24, 7pm Sonya Chung teaches writing at NYU and the Gotham Writer’s Workshop. Long for This World centers around a Korean family in America. Kate Walbert calls it "an intricately structured and powerfully resonant portrait of lives lived at the crossroads of culture, and a family torn between the old world and the new… a powerful debut from a young writer of great talent and promise." | ||||
![]() | Monday, March 29, 7pm Memoirist (The Thing About Life Is That One Day You’ll Be Dead, Enough About You), sportswriter (Body Politic, Baseball Is Just Baseball) novelist (A Handbook for Drowning, Dead Languages) and Guggenheim Fellow David Shields will visit the Booksmith in honor of his latest work, Reality Hunger, that left Jonathan Lethem “astonished, intoxicated, ecstatic, overwhelmed.” | ||||
| >>>april | |||||
![]() | Friday, April 2 at 7pm The man The Onion calls “the thinking man’s Dave Barry” returns with the third and final installment of his Bloodsucking Fiends trilogy. Christopher Moore (Lamb, Fool, The Stupidest Angel) brings his patented brand of socially incisive tomfoolery to a story about an accidental vampire, his mistress and an enormous cat. | ||||
![]() | Monday, April 5 at 7pm Molly Wizenberg, the woman behind the wildly popular blog Orangette, made a name for herself by sharing her favorite recipes with stories about her life. A Homemade Life, her New York Times bestselling memoir, serves up a book-length portion of wit and wisdom. Join her at the Booksmith to celebrate its paperback release. | ||||
![]() | Tuesday, April 6 at 7pm Writer, activist and mother Susan Senator – author of Making Peace With Autism – has written about autism for the Globe, the Washington Post and the New York Times. Her new book shares the stories of parents of autistic children to instruct and inspire, drawing upon Senator’s own experience of finding joy in the midst of great struggle. | ||||
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315 will have essential residential services spared
Fulfilling his promise to restore critical disability services if additional funds became available, Governor Deval Patrick today recommended restoring $21 million to the Department of Developmental Services Residential Budget.
Using his errata budget amendment authority, the Governor's move will save over 300 people who would have lost residential services under his original House 2 proposal.
The Governor has been able to make this recommendation (and other non-DDS restorations) because of additional federal revenue made available from increased Medicaid reimbursement included in the American Recovery and Reinvestment Act (ARRA) and a settlement related to the so-called "clawback" decision by the U.S. Department of Health and Human Services'. That decision relates to Medicare expenses associated with the federal government's assumption of drug costs for Medicare and Medicaid-eligible residents eligible.
Governor Patrick announced the decision in a phone call this afternoon to ADDP President & CEO Gary Blumenthal.
Blumenthal and The Arc of Massachusetts Executive Leo Sarkissian had been working for several weeks with the Administration on understanding the impact of the proposed FY 11 and annualized FY 10 9c residential cuts.
Sarkissian noted: "Throughout the recession, Governor Patrick has kept the needs of people with disabilities as a top priority for the Commonwealth. He is the only Chief Executive who has shown the willingness to understand the vulnerabilities of the people we serve and their capacity to serve their community."
Blumenthal stated: "Once again, Governor Patrick has stepped in to make a principled and compassionate decision saving the most vulnerable citizens of the State from losing their homes."
The Governor's restoration of the Residential Services Account now shifts the effort of ADDP and The Arc to addressing Day & Employment cuts and Family Support reductions. Mass Families Organizing for Change, DDS Citizens Advisory Boards and other groups were part of this collaboration as well.
This development is one more positive development in the Governor's support of developmental disability programs this fall and winter including:
October 2009---Governor Patrick protected the bulk of DDS programs from 9C FY 2010 cuts.
November 2009---Governor Patrick reversed a Mass Health decision that would have cut day habilitation programs by 23% and eliminated over $100 million from Mass Health funded programs.
March 2010---Governor Patrick restored $16 million to Residential Services Accounts preventing 230 people with developmental disabilities from losing their residential services.
The Arc and ADDP wish to thank the Governor, EOHHS Secretary JudyAnn Bigby, A&F Secretary Jay Gonzalez and DDS Commissioner Elin Howe (and their respective staff members) for their collaboration in making this restoration possible. In addition, we are in debt to the hundreds of ADDP and Arc of Massachusetts supporters who called the Governor and legislators to express concern regarding the need to restore funding to the DDS line items.
The budget battle is a long distance marathon, and much work remains.
The Arc and ADDP are pleased with the outpouring of support we have been receiving from individual legislators who continue to demonstrate their support of our community.
The Patrick Administration has given disability advocates solid momentum to build upon with the leaders, and the rank and file of the House and Senate.
Please join us in thanking the Governor by leaving a message at his office at 617-725-4000.