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Get Ready
The days of summer are still long, but I hear September calling. And that means getting ready.
Not just ready to buy books, clothing, and shoes, but also about getting ready to prepare your special child and family for the challenges ahead.
Maybe your child's challenges are transitioning back to routines, fear of physical obstacles in school, or of what the bullies will think up with next to torment them.
No matter the issue, we are all getting ready to take on the school year. But in the meantime, summer is just too short, and let's make sure to enjoy the August warmth and leisure that we have left before we get ready again.
Sharon Marie
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Avoid Those Summertime Blues
Summertime is not always "vacation" time for those of us that have children with disabilities.
Rather than vacation time, it seems more like "endurance" time, as both our physical and emotional mettle are tested daily. This is true especially if we have to lug around special equipment, monitor dangerous behaviors, run around to doctor appointments, and otherwise audition a cast of thousands to watch our special child while we go to work.
That's why I want you to take time to explore the free/low-cost movies, museums, accessible recreation and other events that I have listed for you on this website. I'll bet at least a few fit in your schedule and budget, and may be a nice break for the entire family.
So go forth and enjoy the summer. You've earned it.
Sharon Marie
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This is what happens when Disability Advocates stop being polite and start getting real. And by getting real, I mean that The Association of Developmental Disability Providers, The Arc, and Massachusetts Families Organizing for Change are going to sit in the Senate Gallery every day during the 2011 Budget Senate Debates. They will loudly report if our Senators do not publically debate how our disability monies are allocated and dispersed, follow through with promised funding, and detail how members voted.
The Senate Budget Debates will
be held on:
Tuesday, May 25th,
Wednesday, May 16th,
Thursday, May 27th,
Friday, May 28th (not definite)
with a possibility of Monday, May 24th, if the Senate decides to move early.
Join the ADDP in the Gallery by contacting oanh@addp.org or visit www.addp.org. Because it's time to show the Senate we are done being polite.
Sharon Marie
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Mental Health
and Stigma
NAMIMass wants to spread the word that Mental Illnesses are treatable, that children and adults can recover, attend school, become employed and lead productive lives.
But the stigmas associated with a diagnosis can be nearly as damaging as the illness itself. And because May is the Mental Health Awareness Month, it is only natural that NAMIMass continues to raise awareness by hosting their annual NAMIWalks, at Artesani Park in Brighton.
The walk, which will be on Saturday, May 15th, is officially called "Changing Minds...One Step At A Time", and fittingly describes what so many of us try to do for our kids no matter their diagnosis.
If you want to find out how to "Change Minds" and take part in NAMIMass's walk, visit www.namimass.org or call 781-938-4048, and take a step to stop the stigma.
Sharon Marie
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Autism Is Everywhere
April is "Autism Awareness Month", and if your family is not affected by this disability, I'll bet you know someone's who is.
Autism is everywhere whether we want it to be or not. And now, as the many support organizations
throughout the state host autism workshops, speakers, safety fairs and more, try to attend as many as possible to see the good works being done.
Then pass along the info to other families who don't have the time, childcare or money to go. You'll be doing your part to help parents fight the good fight for our children.
Because for some of us, it's not just another Autism Awareness Month. It's Autism Awareness Day, every day.
Sharon Marie
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Get Your Vision On
The "Visions of Community" conference, on March 13th, 2010, is one disability event you should not miss. Co-hosted by the Federation for Children with Special Needs and other disability organizations, it gives you access to over 40 workshops,
along with an inexpensive registration fee that includes lunch.
Need more? How about the 60+ vendors with information on disability camps, schools, community support organizations,
books, financial planners and therapeutic products and toys?
And there is also free round-trip bus transportation service available for registered conference attendees from Worcester, Southeast and Northeast regions of the state. Local conference goers can take the MBTA Silver Line right to the
World Trade Center/Seaport Hotel, or park in lots along Northern
Avenue.
So it looks like it's all arranged. All you need to do is pick up the phone and call the Federation at 617-236-7210
or register at www.fcsn.org. When it comes to disability information and events, you won't find a better bargain in Boston.
Sharon Marie
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Time to Show Up
Every day information about many disability events appear in my email box, crying out for attention and attendees. And I'm happy to post them on this website, as there are so many darn good ones and not enough people are getting the word.
But the event sponsors, whether they are The Federation for Children with Special Needs or your local school district's
SEPAC, need you to show up. Many of the organizers themselves are the parent of a child or children with disabilities and are now giving back to their communities.
So let's get out to show the non-profits a little love and meet some terrific people. They've been there for us, let's be there
for them.
Sharon Marie
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Wanted: Disability Funds
Few things boil my blood more than when I read about certain recipients of the federal stimulus plan money given to
Massachusetts.
According to The Boston Globe, about $1.5 million is designated to fix a lighthouse on an uninhabited island,
almost $95,000 went to UMass to study Icelandic Pollen, $9 million is for a pedestrian bridge at Gillette Stadium, and
$100,000 went to Harvard for a "high-end"microscope.
If the goal of the stimulus funds was to create jobs and stimulate the economy, why didn't Massachusetts instead
use these funds to rehire laid off DMH/DDS workers? These people were already employed and paying taxes,
and didn't need to create faux work. They had work - helping the disabled population live and work in our communities.
I question our administration's accountability, priorities and common sense when it comes to dispersing stimulus funding
to the disability community. And, sadly, the answer that comes to mind is taxpayer-sponsored boondoggles.
Sharon Marie
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Heroes
Just when your faith in philanthropy begins to fade, heroes step forward to prove that giving to the special-needs community
is alive and well. I'm talking, of course, about Nancy Lurie Marks and the Wellesley Foundation.
You may have read the Boston Globe article that described Mark's and her family foundation's incredible $29 million gift to Massachusetts General Hospital. They plan to use this money to create programs that provide specialized care to adults
with autism, as well as expand and grow child autism research, services, advocacy and physician training.
There are other wealthy foundations and individuals in the Massachusetts area who may still be keeping their wallets in their pockets, waiting for brighter economic times to come. It is easier to wait for a booming economy and bulging bank accounts to return before offering up new donations.
But the time to be a hero is now, when the chips are down, and distressed people need you most.
That is what Nancy Lurie Marks and the Wellesley Foundation have done. And they are what I call heroes.
Sharon Marie |
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Massachusetts' Disability Events - All
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 Genetics and Tourette Syndrome – Free – Saturday, September 11, 10 a.m., Massachusetts General Hospital, Boston. This event features Drs. David L. Pauls, Susan Marakovitz, and Cornelia Illmann. Also, a discussion of the Massachusetts TSA Chapter’s plans to improve programs and services for families affected by TS will have on hand Dan Rostan, VP for Field Services of the National Tourette Syndrome Association, and Chrissy Joyal, President of the TSA of Massachusetts, and other TSA of MA board members. RSVPs are required. Contact cjoyal@tsa-ma.org or call 508-269-0509.
ADHD Support Group For Parents: September 14, 2010, Goodnow Library in Sudbury. Children and Adolescents with Attention Deficit Disorder (CHADD) Metrowest Chapter is restarting the parent support group meetings. Attendees are welcome to bring a friend. MetroWest CHADD is a supportive, informative community that offers monthly support groups, links to local resources, an information line for direct support and an on-line community to help your family with local support. For more information call 508-302-2425 or email metrowest@chadd.net
Down’s Syndrome Multi-Cultural Pot Luck Dinner: September 12, 5:30 p.m., Boston. The Massachusetts Down Syndrome Congress’s Multi-Cultural Pot Luck Dinner is for culturally diverse families who have a child with Down Syndrome. Bring a dish to share, MDSC will provide paper products and drinks. RSVP Sarah Cullen, 1-800-664-6372 or scullen@mdsc.org. This event's hosts include the MDSC Diversity Outreach Group, The Children’s Hospital Down Syndrome Program, the African-American Support Group from the Federation for Children with Special Needs, the Familias Latinas Unidas por el Sindrome de Down, and many others involved in the Massachusetts Down Syndrome Community.
Free Assistive Technology Demonstrations and Open House: August 25, 2010, 10 a.m. and 2 p.m., Easter Seals, in Boston, Massachusetts. For Consumers, Families, Professionals, and Educators. Presented by Easter Seals Boston, MassMATCH and The Assistive Technology Regional Center (ATRC). The demonstrations will be geared to professionals or educators who would like to learn more about these products as well as clients, their families and support professionals who want to gain some hands-on experience with the different devices and academic Tools such as theurzweil 3000, digital recorders, reading aides, text to speech software and more. For more information contact atrc@eastersealsma.org or 617-226-2634.
Free Miracle League Baseball for Special Needs Children in Massachusetts. Fall 2010, Saturdays, September 18th - October 23rd, Boxborough, Ma. Every player receives a free uniform, gets on base and scores a run each inning, and is assigned a buddy from the community to see help them through the game. For players ages 5 to 18, with disabilities that range from needing help paying attention to physically needing help with all aspects of the game. For more information, contact the Miracle League of Massachusetts 978-263-3043, or email miracleleagueofma@yahoo.com.
Free Parent Workshops From the Federation for Children with Special Needs in Boston, Massachusetts.
Basic Rights:
September 15, Holton
September 23, Falmouth
September 27, Foxboro
Transition 101:
September 22 , Salem
Coming Up: An IEP For My Child, Suspension and Discipline in Special Education, 504 Plans, and much more.
For more information, contact The Federation For Children With Special Needs in Boston, Massachusetts, register@fcsn.org, or call 800-331-0688.
Free Fun Fridays at Massachusetts Museums and Attractions: Summer 2010! The "Free Fun Fridays" program gives Massachusetts residents and tourists a free designated museum or attraction on Fridays this summer.
Grand Finale Weekend Friday, September 3
-New England Historic Genealogical Society - Boston, MA
-Sports Museum - Boston, MA
- EcoTarium - Worcester, MA
- Cape Cod Museum of Art - Dennis, MA
- New Bedford Whaling Museum - New Bedford, MA
- Concord Museum - Concord, MA
- Stone Zoo - Stoneham, MA
- Buttonwood Park Zoo - New Bedford, MA
Saturday, September 4
- Edward Gorey House Yarmouth Port, MA
- Worcester Art Museum - Worcester, MA
- USS Constitution Museum - Charlestown, MA
- Naismith Memorial Basketball Hall of Fame - Springfield, MA
- American Textile History Museum - Lowell, MA
- Discovery Museums - Acton, MA
- Cape Cod Children's Museum - Mashpee, MA
- Berkshire Museum - Pittsfield, MA
For more information, visit the Highland Street Foundation or call 508-820-1151.
Adaptive Recreation for All Abilities! The DCR Universal Access Program Sailing in Boston, Kayaking, Canoeing, Rowing , Wheelchair Accessible Fishing Areas, Adaptive Bike Rentals, Accessible Hiking across Massachusetts, and Horseback Riding in Topsfield. Some programs are free and open to the public. Most programs require pre-registration. Paddling and hiking programs have fees, with limited scholarships available. A parent or legal guardian must accompany children. Sighted guides and other reasonable accommodations are usually available upon advance request. All program participants must complete a liability waiver. For times, dates and costs visit The Universal Access Program.
Sensory Friendly Films -Upcoming Sensory Friendly showings: in Framingham and Tyngsboro. The AMC Movie Theatres and The Autism Society of America provide families with autism and many other disabilities an opportunity to enjoy fun films in a safe and accepting environment. The auditoriums have their lights up, the sound turned down and audience members may get up and dance, walk, shout or sing. For more information contact the AMC Movie Theaters or the Autism Society of America.
TOPSoccer: The Outreach Program for Soccer - Is a learning/playing program for youths with physical or mental disabilities. For participating Massachusetts communities please visit TOPSoccer's website or call 978-466-8812.
Autism Resource Center Facebook page. The Autism Resource Center of Central Massachusetts now has a Facebook page for promoting, communicating, and organizing social networking efforts. Learn how to become a 'fan of the Center' by visiting their Facebook Page.
The Arc of Massachusetts now has two Facebook pages: www.facebook.com/group.php?gid+61422009792 One for sharing your personal stories. and one to Save Family Support Services in Massachusetts. You must be signed into Facebook to join. For more information, contact Tracey Reilly Ingersoll, Riverside Community Care, 781-246-2003, ext. 6521.
Basic Rights -Denied: Workshops From SPED WATCH teach participants how to use special education law, policy, and basic advocacy techniques to recognize and address the most common problems and regulatory violations that occur at each stage of the special education process: referral, evaluation, eligibility determination, IEP development, and placement. The material is easy to understand, yet substantive enough to make a real and immediate difference for children. For registration deadline and schedule updates visit SPEDWATCH.
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Sailing Fun For the Visually Impaired and All Abilities: September 5th, 9 a.m., in Duxbury. The Massachusetts Association for Parents of the Visually Impaired (MAPVI) hosts ACCESS Sailing in Duxbury. All abilities and wheelchairs are welcome. Enjoy a breakfast social and one hour sail. Free for one blind or visually impaired child and one adult. Additional sailors are $10 each. You do not need to be a member of MAPVI to attend this event. RSVP to 781-585-3807 or Anita.Sullivan@Perkins.org
Give YOUR Feedback about residential services in Massachusetts. The DMH/DCF Parent and Youth Forums from The Department of Mental Health (DMH) and Department of Children and Families (DCF) are holding forums to get your feed back about redesigning residential care in Massachusetts. Representatives from DMH and DCF will answer questions and hear about your challenges and successes with residential care. This is your opportunity to be heard. Call each area directly to inquire about child care and/or stipends.
Central Massachusetts - September 7th, 2010, 5:30- 7:30 pm., Worcester Public Main Library.
Metro Boston - September 2, 2010, 12 p.m., Bay Cove Human Services. To RSVP 617-371-3125 or email mnixon@baycove.org
Northeast - September 9th, 2010, time and location TBA. To RSVP 978-513-2379 or email ncollier@mspcc.org.
More Mental Health Resources in Massachusetts
Alternatives to Hospital Emergency Rooms -Emergency mental health and/or substance abuse services in your community: Who Can Receive Emergency Service Provider (ESP) Services? People of ALL AGES with:
- No Insurance
- All MassHealth (Medicaid) plans
- Medicare
- Many ESPs also contract with commercial insurance companies.
Every ESP provider answers its toll-free 800 # and provides services 24 hours per day/7 days per week/365 days per year. To get the Toll Free Number for your local ESP: call the Statewide ESP Toll Free # 877-382-1609, and enter your zip code to get the toll free # for your local ESP program.
For more information, visit www.masspartnership.com/esp for more details.
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"Advocates in Motion" Social Program: This Massachusetts Down Syndrome Congress program
provides fun, inclusive, interactive events and fosters social relationships for young people with Down syndrome, ages 13-22, one Sunday per month, 1:00 p.m.-4:00 p.m., at the Waltham YMCA, unless otherwise noted. Activities offered include fitness and healthy lifestyles, community service experiences, job/career skills, arts, sports course with Outdoor
Explorations, Zumba dance lessons, a holiday dance, Compelling Fitness, a musical theatre workshop provided by Access to Theatre, the annual MDSC Buddy Walk, and a Halloween Celebration. Contact Laurie Maranian lmaranian@mdsc.org or 617.462.6355.
"Making Healthy Connections": Youths ages 14-22 with disabilities and/or special health care needs, may apply to Making Healthy Connections a program of Partners for Youth with Disabilities. Participants can meet new friends with similar disabilities, learn about independent living and fitness, talking with their health care providers, adaptive driving, and enjoy adaptive sports and recreation activities. Pre-registration appointments are required.
-Boston MHC meetings will be two Friday evenings per month, beginning in October 2009. Call 617-556-4075, x20, or email dchinappa@pyd.org.
-Springfield MHC meetings, two Saturday afternoons per month, beginning in January 2010. Call 413 584-0455
or email snicastro@pyd.org. For more information about Partners for Youth with Disabilities, please visit www.pyd.org
Music, Social and Career Programs For ASD Teens and Young Adults: Starting in October,
The University of Massachusetts Lowell is offering programs for high functioning adolescents and young adults on the autism
spectrum. Scholarships are available. Choices include: SoundScape Music, Horizons College Preparation Mentoring,
Career Chat Employment Skills and Aspirations Social and Vocational Skills Support. For more information visit
http://faculty.uml.edu/ahillier/ or contact Dr. Hillier ashleigh_hillier@uml.edu or 978-934-2930.
Talking With Your Doctor and Healthcare Professionals: This website has tips and strategies to help youth and young adults with chronic health conditions communicate more effectively with Health Care Providers.
www.hctransitions.ichp.edu/gladd.
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Please donate to help defray our costs and ensure we can continue to bring families this vital information.
As little as $10 per year can make a huge difference.
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