On their way to becoming Sensory Savvy
Everyone has sensory sensitivities, like fabric preferences or noise level tolerances. For an increasing number of people with disabilities, including those with Down syndrome (DS), overstimulating environments can trigger adverse responses that prevent the individual and group from fully engaging.
To that end, the ARC of Essex County has been working to find creative ways to help their clients handle stimulation. They launched a campaign to provide individualized “Sensory-to-Go” boxes for those in need. Equipped with manipulative items like koosh balls, play dough and magna tiles, as well as essential oils, exercise balls and bands, and noise cancelling headphones, the ARC found that disruptive behavior diminished and activity participation increased. Rock the 21 proudly sponsored eight customized “Sensory-to-Go” boxes for adults with DS.
Susie*, one of the recipients of the boxes sponsored by Rock the 21, has a dual diagnosis of DS and early onset dementia. She enjoys a structured routine and expressing her creative side through arts and crafts projects. Due to her dementia, Susie has become more set in her ways, resisting transitions, and becoming possessive over shared items. Equipped with her own customized box including a variety of tactile items like magnetic tiles and sensory art supplies, Susie will be able to better cope with the changes associated with her fleeting memory.
Thank you for helping people like Susie! You are all Rockstars!
*Individual's name has been changed for privacy.
ADULT DAY PROGRAM: SPONSORSHIP
Recent reports indicate there are more than 6 million students diagnosed with a disability, like Down syndrome (DS). The transition for a student with disabilities from high school to college, and later to the workforce can be difficult at best, with limited life skill, higher education, and work preparation programs.
Day Habilitation programs are one such program designed to provide individuals with disabilities opportunities for inclusive activities in their communities, as well as valuable training and therapy for further enhancing communication, and overall self-care and life skills.
Rock the 21 was pleased to sponsor a young adult with DS to attend Hudson Milestone’s Day Habilitation program, which provides meaningful and productive activities. The Day Habilitation Centers are places of individual expression and learning, which will provide Rock the 21’s sponsor recipient with an opportunity to build relationships and further foster their skillsets.
iCan Bike Camp
Rock the 21 was a proud sponsor of the 8th Annual Hoboken Bike Camp which is hosted by the Hoboken Family Alliance and operated in conjunction with iCanBike. The camp teaches individuals with disabilities to ride a two-wheel bicycle independently. This life-changing program fosters inclusion, acceptance and independence, two wheels at a time. iCanBike is a national, not-for-profit organization that has conducted hundreds of camps over the past decade and uses a proven protocol with an 80% success rate. Because of specially adapted bikes that use a roller instead of a rear wheel, participants become more balanced and comfortable in an accelerated time period. An on-site bike technician and floor supervisor help riders advance throughout a series of levels and within five days they are riding independently. Three of our very own rockers attended this year’s camp! A special shout out to all the volunteers who helped make this week a success for the riders - thank you!
Storage Room Turned THERAPEUTIC haven for children in Sierra Leone
World's Hope's Enable the Children (ETC) is a team of local and expatriate staff who provide Physiotherapy and Occupational Therapy, care, and support services to children living with disabilities, including DS, in Freetown, Sierra Leone. The staff travel all over Sierra Leone to provide in-home therapy. While this allows families the opportunity to learn at-home care and treatment for their children, the staff can't travel to see everyone weekly. This challenge was happily solved when ETC was finally given permission and access to utilize a room at a local hospital.
With help from Rock the 21, what was once a storage room, full of boxes (and junk!) has been transformed into a welcoming place for families seeking therapy for their children. The room is inviting, colorful, and equipped with therapy tools and toys! It is because of you that Rock the 21 was able to ensure the room was ready for so many children in need of services. Thank you for the way you give!
Safety First: Rock Supports first Responders
Rock the 21 helped sponsor an important community event - the Hoboken Fire Department's and Hoboken School District's full-day training for Fire, Police and EMS teams. The training prepared the first responders to effectively work with people who have varying degrees of abilities in the event of an emergency. Parents and caregivers were invited for lunch and the afternoon session which focused on strategies for keeping individuals safe at home, school and in the community. There was great energy in the room while best practices were being shared and awareness raised!
Helping caregivers develop a NUTRITION program that rocks
Rock the 21 hosted a free webinar led by Trisomy 21 Nutrition Specialist Gail Perrella M.S, C.N.S The online workshop highlighted how nutrition can help our loved ones with DS thrive physically, emotionally and cognitively. Click here for a list of quick nutrition trips. And for all our rockin’ moms, access an informational guide titled, The Bliss 21 Club Mama Guide, by clicking here.
Rock the 21 honored with Community Award
Over the past two years, Rock the 21 has partnered with Hudson Milestones on several initiatives that enhance the quality of life for their clients with Down syndrome (DS) and other intellectual disabilities.
From sponsoring the launch of their innovative after hours program, which provides adults with DS the opportunity to learn and participate in instructor-led dance classes, providing them with a fun activity that enhances their social and dance skills at the same time; to hosting annual DS awareness and celebration events for their clients to attend and participate in; to most recently providing a scholarship for a young woman with DS to attend their Day Habilitation program, ensuring she continues to have a fulfilling and enriched quality of life – Rock the 21 has enjoyed this rewarding partnership that’s helping to increase awareness about the contributions and fun, social activities that persons with DS contribute and participate in.
We were honored to recently attend Hudson Milestones’ Annual Gala, and receive their “Recognizing Excellence – Chandelier Charity Organization of the Year Award”. This award is presented annually to a community volunteer organization that actively supports individuals within Hudson Milestones’ program.
Thank you Hudson Milestones for the recognition! And, thank you to our Rock supporters! Without your help and contributions, meaningful partnerships with organizations like Hudson Milestones wouldn’t be possible.
Another 3.21 in the books!
Annually, World Down Syndrome Day (WDSD) is observed on March 21st – a date formally recognized by the United Nations to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes DS. This year, we celebrated 3.21 in style at the Elk’s Club, as we were joined by local families who all share one thing in common…a family member who rocks their 21st chromosome! This annual event serves as a celebration, an informal support group, and another opportunity for us to strengthen community connections. Food, dancing, games and comradery made for a memorable evening.
Read below to see how some of our supporters from near and far rocked the day away!
Caitlyn Marchesani, a Rock supporter, participated in the National Down Syndrome Society’s (NDSS) “virtual’ racing event. The event encouraged participants to run, walk, bike, hike, swim and/or move for 3.21 miles at any time, any place and at any pace to celebrate WDSD and raise awareness for the DS community. Caitlyn and her team donated their proceeds to the NDSS and didn’t let the rain on 3.21 stop them from trekking from “the Bull, over the Brooklyn Bridge, to Barclay’s”!
Led by Rachel Bello, Aunt to Rocker Alicia, the Carlstadt NJ Education Association hosted a WDSD rock your crazy socks fundraiser in honor of Rock the 21. By wearing colorful, spirited socks, they educated their fellow teachers and students about DS, and helped spread the message we are all more alike than different.
For the second year in a row, employees at Newport Vineyards in Newport, RI, rocked their crazy socks on 3.21! Organized by Rock supporter, Allison Wilke, the team at Newport Vineyards has made celebrating WDSD an annual tradition. The crazy socks sparked conversation and raised awareness among all who visited the Vineyard on 3.21. All proceeds were generously donated to Rock the 21.
Finally, Rockin’ Socks events continued west with employees from Kingdom Capital in St. Louis, MO, including Rockin’ Aunt Michelle Hackmann, sporting their most fashionable, rocking socks.
How did you celebrate WDSD? Send us your story at email@example.com.
Rock the 21 was lead sponsor at Hoboken Special Needs Parents Group’s first Support & Resource Fair. This event was an incredible opportunity for families to discover locally available services for their loved one with special needs. Everything from sports classes and respite care, to doctors and therapists who all focus on persons with special needs were there to communicate resources and best practices to attendees. Throughout the afternoon, there were short presentations by special education professionals and a self-advocate. All those who attended walked away feeling empowered and supported by a connected community.
The highlight of the day for the Rock the 21 team was meeting a family with a six-week-old baby girl with DS. Her parents heard Rock the 21 was going to be in attendance at the fair, and they traveled from another county to get connected, find support, and learn as much as they could about this new journey they had embarked on. With your help, we continue to fulfill our mission in meaningful ways.
Adikalie, a nine-year-old boy with DS living in Sierra Leone, Africa, is the newest member of our Rock family. As part of our Rock the World initiative, Rock is sponsoring Adikalie to ensure receives critical physical and occupational therapies, as well as much-needed financial assistance towards school fees, supplies, and a uniform.
If you’d like to join Rock the 21 in improving the lives of children with DS in Sierra Leone, please consider sponsoring a child. For just $44 a month, you can ensure a child with DS will receive a caseworker, therapeutic services, and specialized equipment. To learn more and view pictures of the children, please click here.