“Mom, where I am I going next?”
For most teens, an answer from a parent may be “to your room to finish your homework", or “stop texting your friends and I’ll tell you.”
However this question came from my special-needs 19-year-son. He wondered what his disability supports will be when he graduates from his out-of-district school.
I don’t know.
The DDS says no even though he was in their system since age 3, supported by diagnostic reports taller and thicker than Manhattan phone books.
The DMH says no, even though those same reports document that his OCD, ADHD, anxiety, and other co-morbid issues must be addressed by a comprehensive mental health support system.
Seems they think that the DDS should take him. Or I should look elsewhere.
And when I explore other disability organizations, they usually won’t accept someone not funded by the DDS or DMH.
No wonder so many people fall through the cracks in our system.
For any state agency legislator that may happen to read this blog, please tell me how these roadblocks are supposed to help the very people you are designated to serve?
My young adult, and many other young adults need your help. Today.
Many wonderful visitors to this site call the content amazing and thank me.
And I tell them that what’s truly amazing is where the content comes from.
Dig deeper into any event here, and you will find dedicated parents, teachers, grant writers, grass roots organizations, community activists, early interventionists, family partners and medical professionals.
They are the ones who conceive ideas, find money, create resources, and give birth to programs and events that help our families. They are the ones that are amazing. Without them this website doesn’t exist.
The next time you meet up with one of these folks, make sure you extend a holiday thanks for making an amazing difference in your child’s life. In this season of blinking lights and non-stop commercialism, they will surely appreciate it.
A Peaceful Holiday to All
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.
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.
"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.
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
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
Massachusetts' Disability Events - All Ages
Inclusive Camps & Activities in Massachusetts for 2014: From Ayer to Boston to Plymouth, Sturbridge, Worcester and more, camps and programs to help your special child stay busy, engaged and included by enjoying movies, sports, recreation, outings and social activities. See the Camp Page for listings.
"Focus on Vision" Impairment & Blindness Conference: March 12th, 2014, Norwood. "Meeting the Needs of Individuals with Intellectual Disability & Vision Loss" will feature Jim Elliott, Founder & President of “Diveheart” for the KeyNote Speech. There will also be Workshops, Poster Sessions, an Exhibitor Area, and more. Full conference brochure, including CEU information, is available downloadable from the “Training and Events” section of the DDS Vision Loss website at www.mass.gov/dds/visionloss. For more information contact 508-384-5539 or Lisa.DiBonaventura@state.ma.us
Massachusetts Annual Independent Living Education Day at the State House: March 20th, 2014, Great Hall, Boston, 10:30 a.m. to 2:30 p.m. Support funding for independent living centers that benefit all citizens of the Commonwealth. Call your legislators to set a time to visit with them in their offices between 12:00 and 2:30 pm while you are at the State House. Invite them to join us for lunch and the presentation. For more information visit the Independent Living Education Day's Facebook page.
Massachusetts Down Syndrome Annual Conference: March 22, 2014. Worcester. For self-advocates, parents, grandparents, siblings, educators, and other professionals, learn from regional and national experts on a spectrum of topics related to Down syndrome. This year's theme is "Champions"
General Session: Focuses on how to help individuals with Down syndrome acquire the necessary skills to lead full, healthy, independent lives.
Young Adults: Young adults with Down syndrome network, self-advocate, learn about the importance of leading a healthy life and building meaningful relationships.
Brothers & Sisters: Hear how brothers and sisters deal with the joys and challenges of being a sibling and the importance of advocacy.
Education: Best practices for educating students with Down syndrome in an inclusive classroom, and the benefits of inclusion for all learners.
* For more information visit the Massachusetts Down Syndrome Congress or call 781-221-0024.
The 4th Annual Special-Education School Fair: March 28, 2014, Marlborough, 10 a.m. - 3 p.m. The Special-Needs Advocacy Network (SPAN) fair is for Special-Education Administrators, Out-of-District Coordinators, Special-Education Advocates, Attorneys, Therapeutic & Clinical Evaluators and Service Providers, etc. *Parents are welcome to attend after 12:30 pm.
Special Education Schools from across the region will be available to discuss how their unique program can address various students’ academic, cognitive, social, emotional, behavioral, clinical, therapeutic, physical, sensory, medical, adaptive living and vocational needs. See the list of participating schools and disability service providers at the SPAN Exhibitor Page. Fees apply to attend. For more information visit the SPAN Event Page or call 508- 655-7999
Merrimack Special Needs Resource Fair: March 30, 2014, 10:00 a.m. - 2:00 a.m., Merrimack College 315 Turnpike St, North Andover Sakowich Center. For families seeking resources, activities, and services for their family members with special needs. Organizations attending include Autism Housing Pathways, Special-Needs Camps, Recreation, Advocates, Autism Speaks, Treble Chorus of New England, Family Support Programs, Attorneys, Social Programs. For more information visit the Merrimack Special-Needs Resource Fair Facebook page or call 781-316-6040
Family Leadership Series: Through April, 2014, Woburn, MA. Massachusetts Families Organizing For Change A statewide, grassroots coalition dedicated to individual and family support, The Northeast Region in conjunction with the Metro Boston Region 2014 Family Leadership Series: This series focuses on supporting families and individuals to live in their communities as naturally and typically as desired. Applications from families with children or adult family members of any age with any disability who are Department of Developmental Services eligible are encouraged. Dates of series:
• February 28 & March 1, 2014
• April 11 & 12, 2014
• April 26, 2014 (One day only)
Download and print an application from the www.mfofc.org website
You can download and print the FLS application packet from www.mfofc.org
Methuen Special-Needs Resource Fair: April 13, 2014, 3 - 6 p.m. Comprehensive Grammar School, 100 Howe Street, Methuen, MA. Family support services, Therapeutic Programs, Sports and Recreational Programs Educational and Tutoring Services, Social Building, Anti-Bullying Services, Legal and Advocacy, Financial Planning, Assistance Dogs, Summer Camps and More. Entertainment, Prizes, Juggling etc. For more info contact Methuensepac@gmail.com or 978-291-8258 the Methuen SEPAC Page.
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 firstname.lastname@example.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 email@example.com .
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:
Effective Communication with the IEP
Suspensions & Discipline in Special Education
To register, contact The Federation For Children With Special Needs in Boston, Massachusetts, or firstname.lastname@example.org, or call 800-331-0688.
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.
Teens and Young Adults
Massachusetts Annual Independent Living Education Day: March 20th, 2014, Boston State House, Great Hall, 10:30 a.m. - 2:30 p.m. Funding for independent living centers in the Commonwealth will be promoted. Call your legislators and set a time to visit with them in their offices between 12:00 and 2:30 p.m. while you are at the State House. Invite them to join us for lunch and the presentations. For more information visit the Event Facebook Page.
Planning A Life Making the Most Out of High School: March 14/15 in Boston. For parents of students with disabilities aged 14 to 21. 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 email@example.com 617.236.7210 - ext 336 or registration info at 800-331-0688 or firstname.lastname@example.org or visit www.fcsn.org
"Transition Talks" Parent Groups: March 27th, 2014, 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
Transition Boot Camp - Transition Planning with Your IEP: March 25th, 2014, 7 p.m., Haverhill. A transition specialist from The Arc of Massachusetts will discuss how federal and state laws cover the delivery of transitional educational services to students with disabilities, post secondary and vocational education, integrated and supported employment, continuing and adult education, adult services, independent living, and developing effective transition plans with your IEP Team. RSVP to Kerry.Mahoney@TheArcofGHN.Org 978 373-0552 x201.
Transition & Adult Services Workshop and Resource Fair: March 22nd, 2014, Lexington. The Lurie Center Transition Symposium & Resource Fair's "Navigating the Bridge to the Future - Getting to Know Transition & Adult Services“ is for Parents and will feature:
• Autism Spectrum Disorder in Adulthood
• Accessing Medical Care
• Internships as a Path to Employment
• A Discussion of Legal Issues Relevant to the Transition to Adulthood.
Registration is required to LurieCenter@partners.org or visit The Lurie Center. Part of the Roger A. Bauman Lecture Series at the Lurie Center
Autism Housing Pathways Housing Workshop: March 29, 2014, Millbury. Hands on workshop, with the goal of determining what benefits your family member may be eligible for, what you can afford, and what models might be applicable to your situation. Complete sample questionnaires and worksheets, and Section 8 applications for your own personal use. RSVP to email@example.com or visit Autism Housing Pathway http://www.autismhousingpathways.net
IMPACT:Ability - Disability Self Defense Workshop: March 30, 2014, Weymouth. For ages 14+. Workshop instructors have experience working with people with disabilities and teach verbal and physical safety and self-advocacy skills. Students may practice their skills in concrete, realistic scenarios geared toward their specific learning styles. Registration is required to firstname.lastname@example.org or 781-331-7878 ext. 19.
Transitions to Work, for ages 18 - 35 with a Disability: March 2014, Dedham, MA. Employer-based program focused on creating new employment opportunities for young adults with disabilities.
• Students must have completed high school, can travel independently and can work up to 20 hours per week.
• Internships in Customer Service, Culinary Arts and Housekeeping.
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 Website www.jvs-boston.org or the Transitions to Work Program
Transition to Adult Life Expo: April 2nd, 2014, 9 am. – 3 p.m., Attleboro Enterprises Inc., 284 John L. Dietsch Blvd, North Attleboro. Learn what adult life like for someone transitioning from special education, day, employment, and recreation options for adults, and how to help a loved one plan for adult services and hear presentations from local service providers. RSVP by March 14th to The Arc of Bristol County 508-226-1445 x 3118 email@example.com or Attleboro Public Schools 508-222-5150 X 1190 firstname.lastname@example.org.
Envision the Future: Vision Impairment Conference & Exhibitor Fair: April 5, 2014, Watertown. Perkins School for the Blind conference offers transition to adult workshops and exhibitors for students who are visually impaired, blind or deafblind, including those with additional disabilities. Find out about Massachusetts and other information related to transition planning, the adult service system and resources. Keynote speaker is Rosalie Edes, Assistant Secretary for the Office of Disability Policy and Programs, Massachusetts. For more information contact 617-972-7227 or email@example.com or visit www.Perkins.org
Planning for a Positive Future: A Transition Conference & Fair: April 5th, 2014, Concord. Free, sponsored by Minute Man Arc for Human Services, Inc. For parents and guardians helping their loved ones with disabilities transition from school into the adult world. Includes workshops, vocational and day habilitation info, recreational opportunities, legal and financial services, residential choices, etc.
• Transition to Life After High School: How Do We Get There?
• Adult Family/Foster Care, Section 8, Shared Living
• Department of Developmental Disabilities & Mass Rehabilitation Commission Services : Chapter 688; services provided.
Registration required by March 21 to 978-287-7900 or l firstname.lastname@example.org
Youth with Disabilities (16-25) Need for a Youth Advisory Board: March 22, 2014, The Institute for Human Centered Design, Boston. The New England ADA wants to help young people understand their rights under the Americans with Disabilities Act (ADA) as they apply to college or to their first job. To register visit the ADA registration page or contact 800-949-4232 or SHart@ihcdesign.org
NEXT STEP: College Success & Independent Living program: May 10 2014, Boston. 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. For more information, contact email@example.com or 617-278-4119
Free Self-Advocacy Leadership Series for People with Disabilities: January 23 – March 20, 2014, Springfield. This series offers an an opportunity for people with disabilities to learn about themselves and the fundamentals of leadership in a supportive and inclusive environment.
• Who I Am • Communication
• Feelings & Values
• Leadership • Team Building
• Rules & Laws
• Speech Writing
• Rehearsal • Graduation
The deadline for applications is January 8, 2014. Only 12 seats are available to ensure quality adequate support. Additional seating will be made available for support staff. For more information contact 413-205-1642 or 617-770-7676 ext. 118 or Chezarae.McLeod@state.ma.us
School-to-Career for Disabilities: 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 firstname.lastname@example.org
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 email@example.com 617-226-2855
"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 firstname.lastname@example.org or 781.221.0224 or visit www.mdsc.org .