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!