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"How Do
You Do It?"
Raise a hand if a friend or family member has said to you “I just don’t know how you do it.”
They mean well. They have watched you and your child struggle through finding specialists and the correct diagnosis, be frightened by reactions from prescribed medications, and spend lots of money on therapies and medical equipment.
They've watched you fight the denial of services from insurance companies and schools, or deal with unstable mental health behaviors or hospitalizations for your son or daughter's own safety.
My answer to them is always the same; "How can we not do it? He's our child, and he needs our help to have a better future." Even if it’s hard. Even if it’s for a lifetime.
And I tell them if it were their child, they would do the same.
Sharon Marie
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The Crazies
Summer is winding down but the back-to-school crazies are just beginning.
Besides all the running around to find the right shoes, clothes, notebooks, and updated schedules, special-needs parents get to have a little extra crazy time.
We add in the IEP or 504 (signed?) documents, track down guidance counselors, have to update yet another new round of aides, therapists, and teachers, coordinate therapies with classroom schedules, figure how you will get to all the specialist appointments after school hours, then off to the nurse’s office with this year’s medications and paperwork. Get it all right with no mistakes...again. The Crazies.
When the dust finally settles give yourself a pat on the back. It’s done until next year. And we’ll be happy to wait and deal with that set of The Crazies in 2014.
Sharon Marie
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"We will not let this tragedy define her life"
The tragedy was the horrific school massacre in Newtown, CT. The her the quote refers to was a little girl named Joey, also known as Josephine Grace Gay. Sadly Joey was killed that day.
Joey was also autistic and non-verbal. Yet her devastated parents took a higher road than many of us could ever manage. They did this by quickly setting up the "Joey Fund" with the Doug Flutie Jr. Foundation for Autism.
On the Flutie's Joey Fund page, Joey's family states "We will not let this tragedy define her life. Instead, we will honor her inspiring and generous spirit. We have established Joey's Fund in her name through the Doug Flutie, Jr. Foundation for Autism. The proceeds of this fund will help families raising autistic children. It's our way of dealing with this pain and never letting go of her love."
What an inspiration for all of us. The entire message and fund information from the Gay Family can be found on wwwflutiefoundation.org/Donate-Joeys-Fund.asp or Joey's Fund Page.
Thank you Bob and Michelle Gay, for showing us your special way of remembering Joey, and using it to help others with Autism.
Sharon Marie
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Peace & Peace
Wishing you all a happy and joyous holiday season is a little tougher this year. We know that for the families and friends in Newtown, CT, there are broken hearts desperate to make sense, find any joy at all.
As someone who has lived most of my life in the next town over from Newtown, and still have friends and family there, this event feels pretty personal. How to get through it? I wish I knew.
For this year, our tidings of peace, joy and relief from this tragedy go out to Newtown and each other. It's at least a start on a very long road of healing for so many suffering hearts.
Peace and Peace
Sharon Marie
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Mixed Emotions
We want so much for our children to reach life's milestones. Whether it's their first step or first driver's license, we watch with mixed emotions as they navigate life.
For those of us with special kids, it can be hard to watch their "typical peers" hit those milestones; sports teams, dating, college, jobs. It can be hard to digest that these milestones may have a different time frame for our kids. Their hopes and dreams are modified, yet hard-won achievements that others take for granted are celebrated.
I'm stilling planning a celebration for my own son, who, instead of reaching the milestones of college or vocational school, will move to a modified program to assist him reach for some of these same goals. Just at a different time frame.
The emotions are definitely mixed, but we're pretty sure he will get there. That is a good reason for us - and him - to celebrate
Sharon Marie
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More Blogs
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Massachusetts' Disability Events - All Ages
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 Movement & It’s Impact on Learning – An Introduction to Brain Gym: Free, December 7, 2013, 9:00 -11:00 a.m., Framingham. Speaker Pamela Formosa will discuss how Brain Gym can be used to support children with sensory integration, attention, emotional or learning issues through the use of goal setting, self awareness techniques and movement. To register contact info@therapro.com or 800-257-5376
 "Santa Cares" Sensory Events at 16 locations in MA & NH on December 8th can be found on the Recreation Page.
Special-Needs Holiday Celebration with Sensory Santa: December 7th, 2013, Lowell. Special Kids holiday celebration with singing, dancing, holiday sticker craft, and at the end of the program there will be time for families to take photos with Sensory Santa. For more information visit the Pollard Library in Lowell at www.pollardml.org or contact mhancock@mvlc.org or 978-674-1527.
Sensory Friendly Santa Party & Pictures: December 8, 2013, Hopedale, MA, 2-3:30 p.m. and 4 - 5:30 p.m. Open to the public. Sponsored by SenseAbility Gym, their second annual "Sensory Friendly Santa Party". Children with sensory issues, ADHD, Autism and similar diagnoses can have a quiet visit with Santa and not deal with avoid long lines, overwhelming lights and noises. Kids will have a safe place to have a snack and do some holiday crafts, parents will have a safe place to talk and get support. A $10 donation per family is requested at the door. RSVPs required to 508-381-1231 or email at info@senseabilitygym.com or alysia@senseabilitygym.com visit www.senseabilitygym.com
Shut up About Your Perfect Kid! December 11th, 2013, Cambridge SEPAC, Cambridge, MA. Embrace your family’s imperfections, enjoy warm humor and special-needs inspiration with local authors Gina Gallagher and Patty Terrasi. Gina and Patty, real-life sisters and parents to children with special needs, will also discuss their book “Shut Up About Your Perfect Kid”, which covers their journeys in helping their children find the help and acceptance they needed. Gina has daughters with Autism and Learning Disabilities, while Patty has a daughter with Bi-Polar disorder. For more information visit the Cambridge SEPAC.
Social & Recreational Connections for Children With Special Needs: November 16th, 2013, Lexington, MA, 8:30 a.m. - 4:00 p.m. Free to parents and professionals. Speakers Include:
• Anna Wood, Adaptive Sports and Recreation Therapist
• Karen Levine, Developmental Psychologist and co-author of Replays
Workshops will cover:
• Healthy Meals and Nutrition on the Go
• Parent Panels, Sibling Issues,
• Work, Transition & Social Opportunities
• Social Thinking, Managing Anxiety
• Social Media - Help Your Child Connect
• Sports, Recreation, Nutrition
• Communication and Assistive Technology
• Performing Arts, Indoor/Outdoor Sports
For more information contact pvarrin@cotting.org or 781-862-7323 x130 or visit www.cotting.org
Boston Museum of Science Disability Prototype Testers: The Boston Museum of Science is seeking visitors with all disabilities to test new exhibit prototypes and explore the museum.
Participants will interact with exhibit prototypes or explore other existing museum experiences. Testing will always include free admission to the Museum of Science exhibit halls for the day and free parking in the Museum's garage. To participate and give the Museum feedback during an upcoming testing session, fill out their Online Form or complete the application over the phone by contacting 617-589-4438 or emailing siacovelli@mos.org .
 
Adaptive Recreation Across Massachusetts: With the DCR’s Universal Access Program:
Viewing deck at the Summit House atop Mount Holyoke at Skinner State Park is now be wheelchair accessible with the ramp opening scheduled for mid-June, for a spectacular view of the Connecticut River Valley.
Mount Tom State Reservation has a new accessible trail leading to a viewing bridge on Lake Bray.
Mt. Greylock State Reservation has several new accessible interpretive and signage exhibits open.
Scusset Beach has a new accessible boardwalk over the dunes and two new beach wheelchairs that roll into the water
More information can be found on the on the State of Massachusetts DCR Universal Access Program Page.
Camps and Camp Fairs 2013! See over 70 Disability Summer Programs in Greater Massachusetts on our Camps/Camp Fairs Page.
Sensory Friendly Films are now on the Recreation Page.
Free Disability Parent Workshops in Massachusetts - From the Federation For Children with Special Needs:
Basic Rights
Effective Communication with the IEP
Suspensions & Discipline in Special Education
To register, contact The Federation For Children With Special Needs in Boston, Massachusetts, or register@fcsn.org, or call 800-331-0688.
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SPED Child and Teen is not responsible for any listed events' contents, or changes in content, times, dates, fees, or speakers. Please check with event host to verify details.
SPED Child and Teen does not endorse any event, listing or product on this site, and all content is for information purposes only.
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Teens and Young Adults
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NEXT STEP: College Success & Independent Living program: December 7th, 2013, February 8 & May 10 2014, Boston. NEXT STEP: College Success & Independent Living is for students, grades 9-12, who present with a social language deficit, Aspergers Syndrome, NLF, or related learning differences, and are serious about attending college after high school.
NEXT STEP gives students a chance to hone executive functioning, problem solving, and self-advocacy skills that are necessary for living with other students on a college campus. Each Saturday session will include a skill focus, individual and group problem solving activities, as well as a college campus excursion. All Saturday programs will begin and end at the Judge Baker Children’s Center facility in Boston, and include a week-long overnight dormitory experience based at Boston College. For more information, contact nextstep@jbcc.harvard.edu or 617-278-4119.
From Group or Sheltered Employment Settings to Community Opportunities: December 9th, 2013, 6 p.m., Randolph, MA. A renewed statewide effort to further employment for adults served through the Department of Developmental Services (DDS) will be discussed . To Register for this Southeast event, click here. Co-Sponsored by:Brockton Area Arc, GROW Associates, New England Villages, The Arc of Greater Plymouth, The Arc of the South Shore, Road to Responsibility. To register visit http://conta.cc/1ibylHZ
Family Forum on Employment First - Northeast Area: December 10th 2013, 6:00 p.m., Northeast Arc , Danvers, MA. To Register for this Northeast event, click here.Co-Sponsored by:American Training, Bridgewell, Class Inc., EMarc, Northeast Arc, NuPath. To register visit http://conta.cc/1aQBAPD
Aging Parents of Adult Children with Disabilities or "Breakfast With Leo": Free, December 19, 2013, 7:30 a.m. – 9:30 a.m., Dedham. Leo V. Sarkissian, Executive Director, The Arc of Massachusetts, will discuss Aging Parents of Adult Children with Disabilities: Issues and Resources. Hear from an experienced advocate, visit the Take-One Resource Table, and network with attorneys, care managers, and family guardians. RSVPs required to joanne@jericksonlaw.com
Planning A Life Making the Most Out of High School: January 17 /18 & March 14/15 in Boston. For parents of students with disabilities aged 14 to 21. Find information and resources that will support you to understand your role, rights and responsibilities in the transition planning process. Topics cover: Creating a VISION, Person Centered Planning, Portfolio Development, Transition Requirements of IDEA 2004, Assessments, Transition goals into the IEP, Employment & Job Development, Work Supports.
For more information contact tmclaugh@fcsn.org 617.236.7210 - ext 336 or registration info at 800-331-0688 or wmorton@fcsn.org or visit www.fcsn.org
The Housing Choice Voucher Program, November 19, 2013, 5:00 – 7:00 PM, West Barnstable, MA. The Housing Choice Voucher Program is available through local Housing authorities. Section 8 Housing is a federal assistance program that helps eligible Massachusetts residents pay for their housing. Section 8 rental vouchers help Massachusetts tenants pay their rent, Section 8 homeownership assistance helps pay mortgage loans; Project-based Section 8 subsidies help keep rents low in specific private housing developments in Massachusetts. Pre-registration is required to 508-693-7900 ext 249 khackett@mvcommunityservices.com or 508-385-6019 x 125 jdillon@kdc.org
Friendships: November 19, 2013, 6:00 – 8:00 p.m., West Boylston. Mary Ann Brennen, The Real Friends Project Coordinator for West and Central region, will lead a discussion with a focus on ways to build relationships between individuals with and without disabilities. *The Real Friends Project is a partnership between The Arc of Massachusetts MA Department of Developmental Services. RSVP to Anne Hurst fl@hmea.org or www.mfofc.org www.hmea.org
What Makes a House a Home? November 20, 2013, Burlington, MA, 7:00 – 9:00 p.m. Parents, Robin Kantrowitz and Susan Senator will discuss the ups and downs, challenges and successes in setting up and maintaining living arrangements for their sons. Family dynamics, housemates, staffing, cultures and customs all play a role in what you need to consider when putting the pieces together. Jeff Keilson, Advocates Inc., will discuss the variety of options, including Adult Family Care, Shared Living, group home, guidelines and best practices, issues between families, and collaboration as well as issues that arise between families and the provider agency. Panel will discuss the ongoing journey to ensure quality of life for their loved ones. Please RSVP to snadworny@riversidecc.org or visit www.mfofc.org.
Postsecondary Possibilities: November 20, 2013, 6 - 8 PM, Fairhaven. Providing opportunities for students to explore different jobs, obtain paid employment and to think about post-secondary education is a key component to having a successful transition. This workshop will discuss different college resources and activities your child should be participating in to ensure they are fully prepared for when they leave the school system. Please RSVP by November 18 to amycornell@nemasketgroup.org or 508-999-4436
Person Centered Planning – Imagine Better: November 20, 2013, 6 – 8 PM, Holyoke, MA. The keys to person centered planning include developing a vision, inviting others to help and developing an action plan. This workshop will describe an effective method to help you develop a vision for the future for your child and create a full and rich life. Speakers will give examples of how this process has worked for them. RSVP to 413.534.3299 or 413.782.2500 or visit www.mfofc.org
Transition Basics: November 20th, 2013, Haverhill Public Library. Free but registration is required. For teachers, parents and students, ages 14-22. Learn about preparing for the future, the transition years, the process, checkpoints and essential timelines. Kerry Mahoney from The Arc of Greater Haverhill-Newburyport will speak, event is hosted by the Haverhill Special Education SEPAC. For more information contact Kerry.Mahoney@TheArcofGHN.Org or 978 373-0552 x 201
School-to-Career for Disabilities: Fall 2013, Triangle's School-to-Career Job Club is for ages 16-29 with disabilities looking for a job, Mondays from 1:30 - 2:30 p.m. at Triangle in Malden. Free to attend but all attendees are expected to present themselves professionally and fully apply themselves to the job search. For more info or to RSVP contact 781.388.4324 or jbrowning@triangle-inc.org
"Transition Talks" Parent Groups: November 14th, 2013, Seven Hills Family Support Center, Sturbridge, 6 p.m. Free and open to the public. Transition Specialist Robin Foley will discuss helping to empower parents with their child’s special needs journey and transition for ages 14-22. Topics include student visions, exploring post-secondary educational opportunities, etc. For more information call 508-796-1954. For the Fitchburg Seven Hills Family Support Center dates and times call 978-632-4322
Easter Seals Massachusetts - Youth Leadership Network: Boston, Worcester, New Bedford, & Springfield. For youth and young adults between the ages of 14 to 26 disabilities. The Network is a place for these individuals to increase their independence by learning how to develop a personal leadership plan, along with working to spread disability awareness and help decrease bullying through the Don’t disABILITY campaign. It is also an opportunity to build friendships and receive mentorship from others in the disability community. For more information contact dforte@eastersealsma.org 617-226-2855
Transitions to Work - for ages 18 - 35 with a Disability: September 2013, Dedham, MA. Provided by Combined Jewish Philanthropies, the Ruderman Family Foundation and Jewish Vocational Services.
• Students must have completed high school, can travel independently and can work up to 20 hours per week.
• Internships will be in Customer Service, Culinary Arts and Housekeeping, with hands-on work experience and training.
For more information contact Mwenzel@jvs-boston.org or 617-399-3241, or CScibelli@jvs-boston.org or 617.399.3220. Information can also be found at the Jewish Vocation Services Webite www.jvs-boston.org or the Transitions to Work Program
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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 teens and young adults ages 13-22. AIM participants develop leadership and self advoacy skills, form meaningful relationships with peers and build their self-confidence in an encouraging environment. AIM members meet one Sunday afternoon per month from September to May. There are a variety of social, recreational and volunteer activities throughout the year. Contact cendres@mdsc.org or 781.221.0224 or visit www.mdsc.org .
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