Andrew Delaney, age 17, is featured in a recent article by Perkins School for the Blind. The story offers a glimpse into part of the online course work Andrew is doing at home. The Perkins campus is currently closed due to the pandemic. This craft session, shared with one of Andrew’s classmates from Perkins, is led by an occupational therapist. Andrew’s mom, Minnie (one of our Family Engagement Managers) also participates.
Minnie has been a steadfast advocate for her son Andrew throughout his life and his journey through the special education system here in South Carolina and to Perkins School for the Blind, located in Watertown, Massachusetts. Andrew has CHARGE Syndrome, a disorder that affects many areas of the body. Andrew’s vision and hearing are two areas affected by CHARGE Syndrome, qualifying Andrew as a student who experiences Deaf-Blindness.
Minnie recalls that even though Andrew was ready for school, school did not seem ready for him. Andrew’s dual sensory impairment and several other classifications made him eligible for an Individualized Education Plan (IEP). Dual sensory loss is considered a low incidence disability. This means that accommodating these needs can present unique challenges. Implementing Andrew’s IEP was not easy and he was not making the progress his family and team had hoped he would make despite his eagerness to learn.
Minnie continued to navigate the complex special education system, convinced Andrew was capable of achieving more. She also reached out to Family Connection, looking for another parent who might have a child with CHARGE system. She was matched with a support parent who eventually helped her get connected to a local support group through Family Connection. A connection that Minnie says changed her and Andrew’s life.
Eventually Minnie started volunteering for Family Connection, offering comfort and information to parents in the Neonatal Intensive Care Unit. She then volunteered as a support parent herself. Since 2012, Minnie has been a Family Connection employee, serving in a variety of roles including her current position as Family Engagement Manager. She offers her knowledge and guidance to parents who are learning how to work with schools and other professionals to map out the best course of success for their children.
In Andrew’s case, through the CHARGE Syndrome Foundation, Minnie found a contact who introduced her to Perkins School for the Blind. Perkins has a well-established program for children who experience Deaf-Blindness and has worked with many children who have CHARGE Syndrome. This unique program had the potential to accommodate Andrew’s unmet needs. In 2017, Andrew and Minnie flew to Massachusetts where Andrew was able to attend three weeks of a summer session. The following summer he completed a five-week summer course. The staff at Perkins were so impressed with Andrew’s progress over those two summers they offered him the opportunity to study and live full-time at the Watertown, Massachusetts campus! Minnie says it was the hardest but best decision she has ever had to make.
“Everyone at Perkins has been so supportive and willing to think outside the box,” says Minnie. “Having Andrew actively learning alongside others and living a happy and productive life is a true success. It makes me smile.”
While Andrew enjoys being with his family and participating in on-line learning, he also looks forward to returning to in-person classes at Perkins as soon as they resume!
Watch the online crafting lesson: https://www.perkins.org/stories/deafblind-program-gets-crafty-with-hands-on-learning.