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Parent Power Blog 

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.

Sharon Marie
***************

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
***************
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
***************

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
***************


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

*********
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
************
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

***************
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
***************

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
Massachusetts' Disability Events - All  

 Shonda Shilling to discuss Aspergers at Wellesley Library: August 4, 2010. 7:00 p.m., the Wakelin Room, at the Wellesley Public Library. Shonda Schilling, wife of retired Boston Red Sox All-Star Curt Schilling, will discuss her book The Best Kind of Different-Our Family's Journey with Aspergers Syndrome, how their son Grant's struggles with Aspergers Syndrome changed their lives, and what parents can learn about this increasingly common diagnosis. For more information, visit Parent Talk.

                


 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.
Friday, August 6: Peabody Essex Museum - Salem, MA.
Friday, August 13: Old Sturbridge Village - Sturbridge, MA.
Friday, August 20: Institute of Contemporary Art - Boston, MA.
For more information, visit the Highland Street Foundation http://www.highlandstreet.org/special-programs/free-
or call 508-820-1151.

 Free Family Film Festival All Summer: Through August 25th.  Regal Cinemas present select G or PG movies for kids and parents at 10 a.m. on Tuesdays and Wednesdays all summer long. Movies such as Kung Fu Panda, Doogal, Hotel For Dogs, Cloudy With a Chance of Meatballs, The Bee Movie, Daddy Day Care, Monsters vs. Aliens, Fantastic Mr. Fox, Pirates Who Don't Do Anything and many more will be presented. Participating Massachusetts Regal Cinemas include Bellingham, Kingston, Lanesboro and Marlborough.  For more information, visit the The Regal Entertainment Group's Free Family Film Festival Page

 Writing and Shoe Tying Made Simple and Other Back to School Ideas. Free. August 21, 2010, Therapro, Framingham, Massachusetts.  Occupational Therapist Kelly Wilk, will discuss her Writing Made Simple program that teaches children how to form all upper case letter in the alphabet and numerals, and Shoe Tying Made Simple, which teaches a multi-sensory approach on how to tie and untie shoes. For parents, teachers and therapists. For more information, email info@therapro.com or call 1-800-257-5376.

                                        
        

 New Initiatives in Child Psychiatry-Teaming Together with the Community: August 4, 2010, 6 p.m., Summit Academy in Worcester.  Dr. Jean Frazier, Vice Chair & Director of Child & Adolescent Psychiatry, UMASS Medical Center, MA. RSVP-508-856-8569, or Celia.Brown@umassmed.edu  Co-sponsored by the Child and Adolescent Psychiatry at Umass Medical Center and the Autism Resource Center of Central Massachusetts.

 Sensory Friendly Films -Upcoming Sensory Friendly showings include: August 7th - Cats & Dogs 2, 10 a.m., 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. 
  
                
                                                             
 Workshops From The Federation For Children With Special Needs: Workshops are free but registration is required. www.fcsn.org or email register@fcsn.org.

 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.

 SPEDWatch has announced they are launching a Southeastern Massachusetts SPEDWatch Chapter to serve the counties of Norfolk, Plymouth and Bristol. SPEDWatch is a Massachusetts non-profit special education watchdog group that helps parents fight for the educational rights of all schoolchildren with disabilities. Issues include educational discrimination against Massachusetts students with disabilities, widespread noncompliance with, and poor enforcement of, special education laws, poor funding of education in general and reaching out to parent populations that are isolated, unorganized, and often too afraid to speak out publicly. For more information about SPEDWatch, visit www.spedwatch.org
               
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.

                   
 

              
 Summertime Adaptive Recreation for All Abilities! The DCR Universal Access Program this summer offers: 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. 

           
Teens and Young Adults 

 International Sibling Conference in Connecticut: Exploring the Rewards and Challenges of Having Family Members with Disabilities. August 7/8, 2010,  Old Greenwich, Connecticut. This Conference provides the siblings of people with disabilities, individuals with disabilities, parents, spouses/partners and professionals some unique opportunities to share information, gain insight on sibling experiences, and to learn more about current research and best practices in the disability field. Visit www.siblingconference.org, call 203-324-9258 ext. 3014, or didomenicor@arict.org.

 
                 

 Know Yourself - The Key to A Better Life: Adult Conference for post high school and older with AS or related conditions - July 31, 2010, Northeastern University, Boston, MA.  Featuring Keynote Speaker Nick Dubin, and a diverse program of workshops, networking, and social connections. $50 per person. This conference is only for adults with AS and related conditions. There will be a designated area where parents/friends can wait for the day. Visit www.aane.org or call 617-393-3824.

               

 
The Massachusetts Youth Leadership Forum for Students with Disabilities (YLF): July 7th - 9th, 2010, Bridgewater State College. YLF is an opportunity for high school students with disabilities to learn about different opportunities after graduation. Attendees will get advice from college students about how they got to where they are today, discover and develop leadership skills and begin to build a network of people who can help them to get ahead in life. Topics include: Preparing for College, Career Presentations, How to Change Public Policy and Participate in Government, Assistive Technology and more. To be eligible: High school students (entering the 10th grade in the Fall 2010) or recent high school graduates (class of 2010) with disabilities. To apply: complete the YLF application.  For more information contact Easter Seals at 617-226-2635 or cflanagan@eastersealsma.org.

    

                  
  "Advocates in Motion" Social Program: T
his 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.


               
                                                       


                 
 

 Sign up for the SPED Child and Teen newsletter to receive information about upcoming Special Needs workshops, conferences, resource fairs and events in Greater Massachusetts.



 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.


 Have a child with ADHD? If you are looking for local professionals with ADHD expertise, you can contact CHADD's National Resource Center on ADHD (NRC), call toll-free at 800-233-4050. The NRC is staffed by trained health information professionals who can answer many of your questions about ADHD. The NRC does not provide legal or medical advice. For the local Massachusetts CHADD Chapter and support group, visit our ADHD page.  



 
The Special Olympics of Massachusetts' (SOMA) new, state-of-the-arts headquarters in Marlborough, offers sports programs to those with intellectual disabilities. The new facility includes: 
- High-tech training rooms for coaches, volunteers, athletes, medical professionals.
- A full court gymnasium and athletic fields.
- Space for public and private special events.
SOMA offers all areas of Massachusetts year-round sports training and athletic competition. To find a program in your part of the state, visit:
www.specialolympicsma.orgy/north
www.specialolympicsma.orgy/south
www.specialolympicsma.orgy/west
Or contact 508-485-0986 or visit www.specialolympicsma.org. 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


    To send information about upcoming events contact: info@spedchildmass.com  or 508-303-3424


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