Here We Go Again
It's hard to get out of beach and pool mode. But summer is almost over and it’s time to embrace another school and work year.
There is always lots of commotion with moving forward to this next stage of the season; IEPS, medical forms, becoming familiar with the new aides for our child, and organizing the other kids’ schedules around our special child’s particular needs.
The good news is that once everyone is settled in, we can enjoy the organization and quiet moments that come when all the planning is finally working.
And then it will be time to make our holiday lists…
Have a great school year!
Pass the National Background Check Bill
The Arc of Massachusetts has asked that everyone share this important message. In part, it reads:
“Please act on this alert for HB4125 An Act to Require National Criminal Background Checks (for Staff who work with individuals served by the Departmental of Developmental Services - DDS)
Right now only Massachusetts criminal background checks are conducted for those working with individuals served by DDS…If someone lives in Rhode Island, New Hampshire or other neighboring state we have no way of knowing if they have a record in that state or in another state from which they recently moved.
Passage of this bill is important to protect a vulnerable population from sexual or other serious abuse…"
To find out more and submit a message to your lawmaker, visit the Arc of Massachusetts National Background Check Bill page.
A Miracle for Justina
The case of Justina Pelletier is the nightmare that any special-needs parent fears.
Justina is the 15-year-old from West Hartford, Connecticut that is being held against her family’s wishes at a Boston hospital since February 2014.
There is way more to the story than can be related in this short blog. However if you visit www.justiceforjustina.com you will see her parents side of the issue and case for bringing her home. A more newsworthy view can be found by just searching Justina’s name in the internet.
No matter how you find information, it is important that as a parent you educate yourself on what a worst case scenario can look like when parents and doctors disagree.
I hope that Justina goes home to her family soon. And I hope this never happens again.
“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
Statewide Transition Conference for Parents
September 20, 2014, Hogan Center at
Holy Cross College, Worcester, MA
For families of children with disabilities between the ages of 14 and 22
who are transitioning from school into the adult world
For more information visit the Conference Page
For workshop descriptions visit the Workshops page
To register, visit the Registration Page
New England Spina Bifida Conference: September 13, 2014, Nashua NH. For Families, Individuals, Health Care Professionals and Educators. Keynote: "Lessons for a Lifetime" - A panel of Adults living with Spina Bifida share their stories. Other topics include: Bullying, No Sibling Left Behind, Adaptive Driving Assessment, Adult Urology, Nutrition, Sexuality, Adaptive housing, Kid's Camp, Exhibition Hall. For more information visit the Spina Bifida Association of New England Page or contact edugan@SBAGreaterNE.org or 888-479-1900
Adaptive Fishing Clinic: September 18th, October 9th, 2014, Bridgewater. Designed for the beginner fisherman, and is open for people ages six and above and with all abilities. Instructed by Jim Legacy, Angler Education Program, DCR Universal Access Program. Fees apply. Participants must attend with an adult. All equipment is provided. the Adaptive Fishing Clinic. For more information visit the Bridge Center's Programs page.
Ellie Bloom Olympics: September 20, 2014, Needham. Athletes of all ages and abilities participate in a day of fun and challenging track and field events. Individuals compete in running and wheelchair dashes, tennis and softball throws, ring tosses, relay races, Frisbee throws and walks, and go home with many medals. This event is held in memory of Ellie Bloom, a longtime supporter and volunteer of The Charles River Center who worked hard to develop quality programs for her daughter with multiple disabilities and others. For additional information please contact 781-972-1060 or firstname.lastname@example.org or visit The Charles River Center.
Find more Massachusetts Recreation on our Recreation Page
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.
Boston Museum of Science Disability Prototype Testers: Spring & Summer 2014. The Boston Museum of Science is seeking visitors with all disabilities to test new exhibit prototypes, explore the museum, and give feedback to help improve their accessibility.
Testing includes free admission to exhibit halls for the day and free parking in the Museum's garage. To participate and give the Museum feedback fill out their Boston Museum of Science on line form or contact 617-589-4438 or 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.
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
ImprovBoston Disability Scholarship: The No Limits Media and ImprovBoston scholarship is to help a person with disabilities learn improvisational comedy. People with disabilities will perform alongside improvisers of every type. Eligibility requirements must be met:
• You must be at least eighteen 18 years old
• You must be able to engage productively in collaboration with others
• Only complete applications will be considered.
For more information contact email@example.com or visit ImproveBoston Disability Scholarship page.
Building a Home Conference: September 27, 2014, DCU Center, Worcester. The Massachusetts Developmental Disabilities Conference provides planning, tools and more to assist in helping a loved one with a disability live, work, and enjoy life in their community.
• Housing Connections & Shared Living
• Working with the DDS, Agencies & Resources
• SSI, SSDI & Employment
• MassHealth & MassRehab Benefits
• Twenty-Two at Twenty, a Nontraditional Transition Story
• Section 8 & Affordable Housing Options
• Person Centered Planning
Fees apply. Early Bird Registration before August 31. Limited respite funds and scholarships available. For more information visit www.mfofc.org or call 508-824-6946
Shared Living & Adult Family Care Conference: September 30, 2014, 9 - 3 p.m., Worcester. Keynote speaker will be Dan Habib, documentary film maker of "Including Samuel".
• Commissioners Round Table Panel Discussion: With commissioners from the DDS, MRC, MassHealth, MAB, and many more from Massachusetts.
• Guardianship/Special Needs Planning- Presenter: Frederick M. Misilo, Jr., of Fletcher Tilton
• Positive Behavioral Supports. John Struth, Clinical Director for Nonotuck Resource Associates
• My Way with Dignity
• Person Centered Planning
• Caring for Yourself – Compassion Fatigue
• Supported Decision Making
• Shared Living vs Adult (Foster) Family Care
Fees apply. For more information visit http://sharedlivingconference.com/
Transitions to Work, for ages 18 - 35 with a Disability: September 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
Garden Growers Club for DDS Eligible Adults: Saturdays, July 19 – October 4, 2014, Woburn. Join EMARC of Reading and Malden for a free program to nurture crops and reap a harvest. Includes transportation from EMARC's location at 20 Gould Street, Reading and Malden High School. Participants must have completed DDS eligibility, be aged 22 or older, and live at home in the Metro North area (Everett, Lynnfield, Malden, Medford, Melrose, North Reading, Reading, Saugus, Stoneham and Wakefield). For more information James Carnazza at 781-587-2352, Jcarnazza@theemarc.org
Autism Housing Pathways Housing Workshop: June 21st, the Autism Support Center, Danvers. Come prepared to roll up your sleeves and work!. The goal is to end the day with an idea of what benefits your family member may be eligible for, what you can afford, and what models might be applicable to your situation. Completing questionnaires, worksheets, and Section 8 applications that will not be shared and are for your private use. Please RSVP to Cathy Boyle at firstname.lastname@example.org or visit Autism Housing Pathways
Peer Employment Training Classes: July & August, 2014, in Worcester and Lowell. The Peer Employment Training recognizes that there is no better person to inspire hope in an individual new to mental health recovery than someone who has "walked the same path." . There are only 20 seats available in each class. For more information contact Robert Walker, MA Department of Mental Health Office of Recovery and Empowerment, email@example.com to request an application and to get additional information Or see the Flyer at the DMH website.
Disabilities' Poetry Slam & Art Exhibition. July 23rd, 2014. To celebrate the 24th Anniversary of the Americans with Disabilities Act (ADA), the New England ADA Poetry Slam and Art Exhibition will host preselected poets and artists with disabilities to present at 7:00 p.m. at the Institute for Human Centered Design in Boston. To RSVP or for more information visit the New England ADA's Poetry Slam page or call 800-949-4232.
"Transition Talks" Parent Groups: May 29th, 2014, Seven Hills Family Support Center, Sturbridge, 6 p.m. Free and open to the public. Transition Specialist Robin Foley will discuss the special needs journey and transition for ages 14-22. Topics include student visions, post secondary opportunities, etc. For more information call 508-796-1954. For the Fitchburg Seven Hills Family Support Center dates and times call 978-632-4322
Planning A Life Making the Most Out of High School: TBA in Boston., Springfield and Worcester. 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
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 firstname.lastname@example.org or 617-278-4119
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 email@example.com
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 firstname.lastname@example.org 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 email@example.com or 781.221.0224 or visit www.mdsc.org .