“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.
Double Jeopardy: Race & Special Education from a Parent Perspective: May 3, 2014, "Parent University" Conference, Boston. This Boston Public Schools and Urban Pride conference is free to BPS families and offers some relevant disability topics such as:
• "Double Jeopardy: Race & Special Education from a Parent Perspective," with Nancy Tidwell, Founder of the National Association for the Education of African American Children with Learning Differences
• "Inclusion for Students with Disabilities: What it is. What it isn’t."
• "Think, See, Hear, Believe! College Experience for High School Students with Severe Disabilities." The Massachusetts Inclusive Concurrent Enrollment (ICE) Program supports high School students with severe disabilities ages 18-22 to take college classes on topics they want to learn about, explore their career goals, develop vocational skills through internships and paid employment, and participate in college student life. .
• Assistive Technology and Universal Design for Learning.
** Families can sign up for the whole day or just for select sessions. Childcare is provided but you must register in advance. For more information visit the Parent University Registration Page.
All Aboard The Arc! Rally For Inclusion: May 7, 2014, Boston Common. Help focus public attention on the abilities and needs of people with intellectual and developmental disabilities and their families. All Aboard The Arc! is a statewide pledge event in which anyone can participate - individuals, families, community members, local leaders, supporters of The Arc, students, and employee groups.
The Arc is the state's leading advocacy organization for people with intellectual and developmental disabilities and their families. With 18 chapters across Massachusetts, The Arc is directly assisting tens of thousands of people with disabilities by providing a range of programs and supports based in the community.
For more information visit the Arc of Massachusetts' Events Page
New England Celiac Conference: April 13, 2014, The Four Points by Sheraton in Norwood.
• Ciarán P. Kelly, Medical director,Celiac Center at Beth Israel Deaconess Medical Center
• Alan Leichtner, Director,Celiac Disease Program at Children's Hospital Boston
• Alessio Fasano, Director, Center for Celiac Research at MGH
* Naturally Healing Foods
* Easter/Passover Desserts
* How the Gluten Free Diet Affects Families
* Newly Diagnosed
* Staying on Top of it All
No walkins. Fees Apply. For more information call 617-262-5422 or visit www.healthyvilli.org
CARE Caregivers Conference: May 9th, 2014, Marlborough. Free to Caregivers. The Massachusetts Lifespan Respite Coalition conference hosts nationally known speaker Lon Kieffer, also known as the "Defender Of Caregivers" Before becoming known as DOC, Lon was known as the "hardest working, funniest, most 'EnterTraining' Speaker in the healthcare industry" for his "Love, Laugh and Learn" philosophy. Len offers a message of validation that increases Awareness, Acceptance and Allowance. There will also be workshops and a resource fair. For more information visit www.massrespite.org or email email@example.com
"Early Connections" Vision Impairment Conference: May 3rd, 2014, Watertown. "Taking Care of Our Children - Taking Care of Ourselves" is for parents of children with visual impairments from birth to age 7, and for professionals. Childcare provided.
Sessions will include
• Sensory-Based Calming Strategies
• i-Pad Information
• Home Techniques for Early Education
• IFSP to IEP: Planning for Preschool
• ABCs of Literacy
• Letting Go, Being Safe at Home
• Feeding & Eating
Keynote Speaker: Susan LaVenture - Executive Director of NAPVI, and whose youngest son Alex was diagnosed with retinoblastoma, a rare form of infant eye cancer.
To register or for more information visit the Perkins Early Connections Page or contact 617-972-7553 or Torey.Akers@Perkins.org
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
Employment Matters! Conference: April 22nd, 2014, Worcester. The Massachusetts APSE (Association of Persons Supporting Employment First) Third Annual Employment Matters! conference will be at the College of the Holy Cross in Worcester. APSE is national organization with an exclusive focus on integrated employment and career advancement opportunities for individuals with disabilities. For more information about this event visit their ASPE registration page or email email@example.com
Astronomy for Everyone - Neuro-Diversity Workshop: April 25th, 2014, Harvard's Astrophysics Center, Cambridge. Free. For High School Students with dyslexia, ADHD and/or autism spectrum disorders, visit the Harvard-Smithsonian Center for Astrophysics to learn about careers in astronomy and share tips on how to work toward careers in science.
Registration is Required to the Harvard Astronomy for Everyone Page. Participants must be accompanied by a parent or guardian. Or for more information contact Dr. Smadar Naoz firstname.lastname@example.org
Understanding the Roles & Services of The Department of Developmental Services and Massachusetts Rehabilitation Commission: April 29, 2014, Newbury. Find out about adult agencies for individuals who have disabilities, Chapter 688, who is eligible and what types of services are provided. Speakers include Victor Hernandez, Department of Developmental Services and Linda Piergeorge from the Massachusetts Rehabilitation Commission. Hosted by the Triton Regional School District SEPAC at Triton Regional High School. Register by April 18. For more information contact Kerry.Mahoney@TheArcofGHN.Org 978 373-0552 x 201
Disability Transition Resource Fair: April 30, 2014, Westwood. Westwood Public Schools, their Special Education Parents Advisory Committee and the Westwood Commission on Disability’s Transition Resource Fair “Building Bridges to the Adult Community”, is at the Thurston Middle School Gym, 850 High Street, Westwood, 7:00 - 9:00 p.m. There will be information and representatives of services and programs for students transitioning out of special education into the larger adult community, including LifeWorks, TILL, SNCARC, Federation for Children with Special Needs, Riverside and Curry College. For more information see the "Building Bridges" flyer on line
The Road Forward: DDS and Chapter 688 Transitional Services: April 30, 2014, Burlington, 7 p.m. Join Massachusetts Families Organizing for Change and the Massachusetts Down Syndrome Congress for this Full Life Ahead Workshop. Learn about T22 transitional services, how state dollars are allocated and the process to access these supports. RSVP to email@example.com or visit www.mfofc.org
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 firstname.lastname@example.org or visit Autism Housing Pathways
"Transition Talks" Parent Groups: April 24th, 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
When the School Bus Stops Coming - Transition Boot-Camp: April 3, 2014, West Newbury. Kerry Mahoney and Barbara Pandolfi, of The Arc of Greater Haverhill-Newburyport will provide an overview of employment and day services, residential, independent living and opportunities for community integration. Plus there will be a panel of parents and young adults discussing life as an adult. Workshop is hosted by the Pentucket SEPAC. Register by March 31st to Kerry.Mahoney@TheArcofGHN.Org or call 978-373-0552 ext 201
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
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 firstname.lastname@example.org 617.236.7210 - ext 336 or registration info at 800-331-0688 or email@example.com or visit www.fcsn.org
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
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 .