Envisioning Success

tags: Project HEAL (Health, Education, Advocacy, and Law) at Kennedy Krieger Institute About Us Potential Magazine

By Laura Thornton

A photo of Savion, middle, with his mom, Dawn

Working with Alyssa was quite amazing. She knew what was meant for me. I now see myself as actually succeeding." 
– Savion

When Alyssa Thorn first met Savion, he was struggling—in two years, he’d earned just four high school credits, and hadn’t been able to make any measurable progress toward meeting the goals listed in his individualized education program (IEP).

Savion, 18, has Cogan’s syndrome, which can cause progressive vision and hearing loss; he’s also been diagnosed with ADHD, anxiety and depression. “His lack of progress in high school had exacerbated his depression and anxiety, which made him not want to attend school,” says Thorn, a staff attorney at Project HEAL (Health, Education, Advocacy, and Law), Kennedy Krieger Institute’s community-based medical-legal partnership, and a program of the Maryland Center for Developmental Disabilities at Kennedy Krieger. Project HEAL provides legal and advocacy services to the Institute’s patients and their families.

Because of his depression and anxiety, Savion had been working with behavioral psychologists at Kennedy Krieger for a few years. But because so much of his frustration had to do with school, they suggested that Savion and his mom, Dawn, work with Project HEAL to advocate for more appropriate educational supports and services.

In early 2018, Thorn worked closely with Savion and Dawn to advocate for a more appropriate educational program that would better serve his needs. Thorn learned that the school he was attending at the time wasn’t preparing him for the possibility of losing his eyesight or hearing—Savion needed to be learning Braille and American Sign Language.

Thorn spoke on Savion’s and Dawn’s behalf at Savion’s IEP meetings to ensure that Savion’s IEP was being followed, and to make appropriate changes to better meet Savion’s needs. Through Thorn’s advocacy, Savion’s IEP team—consisting of general and special educators, other related service providers, and Dawn—concluded that Savion needed a different sort of environment for his education—one that would provide Savion with a higher level of support.

Thorn, Dawn and Savion toured a few schools that Thorn and Savion’s IEP team thought might be a better fit for Savion—they sat in on classes and met with teachers and other staff members. Thorn also worked with the local school system to ensure a smooth transition for Savion. “We had to develop a new plan to help him make progress,” Thorn says. “We needed to help him learn to navigate his world. We needed to help him earn his diploma.”

Ultimately, Savion’s IEP team determined that the Maryland School for the Blind was the most appropriate school for Savion, based on his complex needs. “Savion is finally receiving the education and services to which he is entitled,” Thorn says. “Since he’s been at his new school, he’s happy and making friends, and his depression and anxiety have gotten much better.”

During the first few weeks at the Maryland School for the Blind, Savion would tell Dawn every morning that he was so glad he was at that school.

“Before switching schools, Savion wanted to drop out of school,” Dawn says. “We needed to get him to a place where he felt like he mattered. At his old school, he felt like he was just taking up a seat. He needed to be in a school setting where they understood him. At the Maryland School for the Blind, they welcomed him with open arms. I felt like that was the school for him, and that we didn’t have to look anywhere else."

Savion is much happier now. “If it wasn’t for Alyssa, Savion wouldn’t be at the school he’s at now and doing so well,” Dawn adds. “Alyssa just doesn’t know what she has done for me and my son. I don’t have to worry anymore.”

“Savion is such a kind, motivated and optimistic young man—even in spite of the extreme medical challenges he faces,” Thorn says. “I am inspired by his perseverance and hard work!”

Savion has been at his new school for a little more than two years. He’s back on track, earning the credits he needs to graduate from high school, engaging with his teachers and classmates, and learning Braille and American Sign Language.

“I feel like they actually understand me,” Savion says of his new teachers. “Overall, I just feel like it’s a better school for me.”

Savion particularly enjoys developing computer animations, and hopes to go to college one day to study animation and video game design. “I would really love to do that. I have a long way to go, but I can get there. Working with Alyssa was quite amazing. She knew what was meant for me. I now see myself as actually succeeding.” 

Visit the Project HEAL website to learn more about Project HEAL.