Developmental Disabilities Awareness Month: A Parent’s Hope for Their Child’s Future

Developmental Disabilities Awareness Month: A Parent’s Hope for Their Child’s Future

Every parent envisions a certain future for their child – a future filled with happiness, an opportunity for growth, and love. What would you do if you were faced with a diagnosis that would threaten that future?

Nearly 24 years ago, doctors diagnosed Fred with severe autism. Denise Boian, his mother, suspected this when he wasn’t meeting certain developmental milestones, but the news was devastating.

Still, her hopes for Fred have remained steadfast. When asked what she wants most for her son as he gets older, Denise said simply, “Happiness. I just want him to be happy.”

Now at 26 years old, Fred is living a full life at home with his family – an intentional decision that a lot of work has gone into. To make staying at home a possibility, Denise and her husband, Jeff, have prioritized the development of Fred’s communication and behavioral skills.

Being nonverbal means that Fred has had to find other ways to communicate his needs. He’s been fluent in American Sign Language (ASL) since he was a child, which has become one of the most popular language classes across the US. Still, ASL is not enough to bridge the communication gap when Fred is in more community-based settings. That is where augmentative and alternative communication (AAC) and speech-generating devices (SGD) come in.

The developmental disability (DD) community was hit especially hard by the pandemic, and many families worried about their loved ones regressing during this time of isolation. Amazingly, it was quite the opposite for Fred. For five hours a week, he works one-on-one with a special education teacher from Chelmsford High School to refine his written skills and using his SGD. He depends almost entirely on this device to communicate, and the Boston Children’s specialist that he sees was blown away by his recent progress. During their semiannual telehealth visit, Denise was beaming with pride as Fred expressed himself.

It’s no secret that Fred has some incredible people in his corner. While a loving and supportive family plays a huge role in a person’s journey in the DD community, the other piece of the puzzle is the programs and supports they receive. The Incompass Family Support Center helps the Boian family navigate these supports through the Agency with Choice (AWC) program.

When asked about staff who impacted Fred’s journey over the years, Denise noted Linda Cox, Senior Family Support Specialist, saying “She owed a lot to her.” Fred has since been transferred to Benjamin Waithe’s caseload, an Autism Spectrum Disorder Specialist, and Denise is confident that “he will show the same enthusiasm as all Incompass staff have shown our family.”

Our family support specialists help Denise manage a stipend that allows for weekly communication and behavioral therapies, respite relief, and community-based activities with Fred’s companion, Andy. Denise had this to say about their friendship, “Andy gives Fred a chance to feel like a normal kind of person. They really are like best friends.”

She often wonders what Fred’s life would have been like without this diagnosis. Would he have followed in his family’s steps and joined the military? Would he be in a relationship? She takes solace in knowing that her son will always be cared for, as her daughter will assume care of Fred one day. With the support system he has, the sky is the limit. We’re rooting for you, Fred!

Incompass Human Services “Adopt-a-Family” Campaign  Raises Nearly $20K

Incompass Human Services “Adopt-a-Family” Campaign Raises Nearly $20K

Funds raised were donated directly to Greater Lowell families in the Incompass Family Support Center who were identified as high-need this holiday season.

CHELMSFORD, MASSACHUSETTS— Incompass Human Services™ (formerly LifeLinks CLASS), a not-for-profit organization that delivers enriching supports to people with intellectual and developmental disabilities and their families throughout Greater Lowell and Greater Lawrence, has raised nearly $20,000 through the “Adopt-a-Family” year-end fundraising campaign in support of families in need.

” Adopt-a-Family” was launched to provide targeted financial relief to high-need families who receive support from the Incompass Family Support Center. Hardships caused by the pandemic presented new challenges for households who are already caring for loved ones with medically complex conditions. Some family members lost their jobs, while others are simply unable to work due to schools and day programs shifting to virtual environments.

Incompass Human Services put out a call-to-action to its supporters in Greater Lowell and Greater Lawrence, and the community quickly rose to the occasion. Three of the largest contributions came from long-time supporters of the organization…

  • Gregg Bonheur, Senior Vice President of The Bonheur Scott Traino Group at Morgan Stanley and former member of the Incompass Human Services board of directors, donated $5,000.
  • Wallwork Curry McKenna, an integrated marketing firm led by Alison Costello, and Decibel Media, a media planning and buying firm founded by Tim Davies, donated a combined $3,000 after working with the agency to launch the new Incompass Human Services brand.
  • The Durkin Foundation, a Billerica-based charitable foundation led by Executive Director Matthew Durkin that supports people with intellectual and developmental disabilities, as well as U.S. veterans, and those affected by Alzheimer’s Disease, donated $2,500.

The campaign’s initial goal was surpassed last week, and all of the money raised going directly to selected families in the Incompass Family Support Center who were overjoyed with the news!

“To wrap up the year with such support from our local community partners, vendors, and from Care Champions within our agency really just leaves me speechless,” says Kelly Trickett, Director of Family and Community Services at Incompass Human Services. “The impact that this has had on our families could never truly be measured and we are beyond grateful for each and every donation that has been received.”

“We faced every obstacle you could imagine this year, and we faced it head-on as a team,” added Jean Phelps, Chief Executive Officer at Incompass Human Services. “But the fact is that we rely on the generosity of the community to provide the critical services and supports that families in our network so desperately need, and the overwhelming response to the “Adopt-a-Family” initiative truly warms my heart.”

“Durkin Delivers” to LifeLinks CLASS

“Durkin Delivers” to LifeLinks CLASS

The Durkin Foundation Donates $4,000 Worth of Market Basket Gift Cards to the LifeLinks CLASS Family Support Center

LifeLinks CLASS was overwhelmed with joy to be a designated beneficiary of The Durkin Foundation’s “Durkin Delivers” campaign, receiving $4,000 in Market Basket gift cards last week that will be disseminated to families in need by the LifeLinks CLASS Family Support Center.

“The past two months have been an incredibly stressful time for all of us in the community, but the families who we support have really been hit hardest, “ says Kelly Trickett, executive director of the Family Support Center. “These $100 Market Basket gift cards couldn’t come at a better time, and I can’t think of anyone who will appreciate it more than the families we are supporting.”

The executive director of The Durkin Foundation, Matt Durkin, is a fierce advocate for the intellectually and developmentally disabled in Greater Lowell. At the onset of the “Durkin Delivers” campaign, he attended a Zoom meeting with Trickett and LifeLinks CLASS Director of Residential Services Angie Otieno to hear more about the work LifeLinks CLASS is doing this challenging time.

“Connecting with Angie and Kelly was so important to me, as I want to understand all the ways that The Durkin Foundation can help organizations like LifeLinks CLASS who are delivering critical supports to our most vulnerable population during this time of need,” said Durkin. “We’re thrilled to announce the gift to LifeLinks CLASS, and it was really a no-brainer to make them a beneficiary of the campaign.”

Durkin also touched on the impact to area small businesses as part of this fundraising campaign. “We heard over and over again from advocates that gift cards to restaurants and grocery stores will go a long way right now, and these gift cards are helping out those business owners as well.”

The LifeLinks CLASS Family Support Center works with more 300 families throughout Greater Lowell and Greater Lawrence, providing individualized services to families who have an intellectually or developmentally disabled individual living at home with them.

“Over the past two months, we’ve actually been able to increase our engagement with families in the community,” said Trickett. “We’ve pivoted to providing daily virtual supports and activities, ranging from online yoga classes and art classes to check-ins via Zoom.”

 

Next Stop: Hogwarts

Next Stop: Hogwarts

During these times of social distancing, everyone has been searching for creative ways to stay engaged while at home. Our Strive2Thrive (S2T) program took things one step further by using their daily Zoom sessions to delve into the wizarding world of Harry Potter. With input from program participants, Alicia Pagan, a Family Support Specialist, was able to pull together a week of magical adventures for the group.

Which House do you belong to? The Sorting Hat quiz placed participants in Gryffindor, Hufflepuff, Ravenclaw, or Slytherin. “I enjoyed being able to share our Hogwarts houses and patronesses and getting insight into what the quizzes shared about everyone. Also just seeing everyone share their own little tidbits of knowledge and more,” said S2T mentor Kiley.

 

 

“The Harry Potter Virtual Escape Room was my favorite especially when we accomplished the task together, ” said S2T participant David. Created by a youth services librarian for a local library in Pennsylvania, the Hogwarts Digital Escape Room gave participants the option to participate individually or with friends in a competition.

 

 

The wizarding festivities were topped off with a reading from Harry Potter and the Sorcerer’s Stone, thanks to Alisha from the LifeLinks CLASS Finance team.

 

 

Halle, a S2T member, explained why the activities were such a success, “I loved Harry Potter week because I was able to connect with my friends who love the Harry Potter franchise as well! I also liked how we toured The Wizarding World Of Harry Potter at Universal Studios on YouTube, and how we did Harry Potter Trivia because we worked as a team!”

Stay tuned to see what this innovative program comes up with next!