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Jack Barker’s Transition to Adulthood: It Takes A Village!

Rowena Barker shares how their family navigated their son's, Jack Barker, transition story.

June, 2020

Jack is 22 and in his final year of public school. He has CHARGE Syndrome and is deaf-blind and non-verbal with significant and complex needs. My husband and I have worked hard to successfully navigate the labyrinth and real-world challenges of medical interventions, services, supports, and the public education system, but the journey has been an arduous one with many roadblocks and detours through fragmented systems. Like all parents, we have striven to educate ourselves in order to cultivate and exhaust all possibilities to enable Jack to obtain as many tools for his toolbox as possible and achieve the most optimal outcome. We find ourselves at a daunting crossroads where we wear heavily the increased recognition that we are not permanent and have an expiration date and must intentionally prepare him for life beyond us.

Our goals for Jack are comparable to those we have for his siblings. We profoundly desire for him to fulfill his potential and want to equip him to live his best life possible. As we have worked diligently to leave no stone unturned, we’ve spent countless hours researching and digging to find and obtain critical resources. Ingenuity and innovation have been essential. Quickly, we learned that nothing worth anything is ever achieved easily. I am confident that this strikes a chord with every parent reading this.

Person-Centered Planning

When I reflect on the tremendous progress Jack has made over the past few years, I see a village of people who have each played an important role. I see a puzzle where each of the pieces are finally falling into place. It is my opinion that the key ingredient that has allowed for such striking progress was Jack’s person-centered planning (PCP) session. It has proven to be the cornerstone for the roadmap to his future.

Jack’s PCP was the first one to occur in our county. We encountered a great deal of skepticism. We were asking over 20 people to commit 3 to 4 hours of their time to participate in something they didn’t truly understand conceptually. Led by two trained co-facilitators from our state deaf-blind project, Jack’s PCP was one of beauty and transformation. It created alignment among everyone attending and fostered greater understanding of Jack and his every nuance and idiosyncrasy. We were able to bridge the gap between home and school, strengthen rapport, and synchronize our efforts.

Students who are deaf-blind are very complex and Jack was the first deaf-blind student at his school. The PCP rapidly lessened the intimidation his team felt when working with him and everyone gained a holistic sense of who he is beyond his disability. Gratefully, the shared wisdom from everyone present at his PCP resulted in a robust action plan and integrated efforts that have created significant value for Jack. Every step since has been able to bear fruit on his behalf. The connections made at the PCP session have endured and remained powerful in the quest for a dynamic life for Jack.

Young man views go talk device.

Deaf-Blind Immersion Experience

Jack’s comprehensive action plan, the identification of his strengths, gifts, and preferences, and the pursuit of specific tasks in an equitable and accountable way resulted in his acceptance into the Deaf-Blind Immersion Experience at the Helen Keller National Center (HKNC). Thankfully, we were able to take a small team of professionals with us, one of them being his TVI. That trip to HKNC in New York helped each of us understand the depth and breadth of Jack’s potential with far greater clarity. Upon our return home, he continued to make progress from the knowledge we gained and the global coordination that emerged.

Jack folding towels with an adult.

Key Changes

A number of other important factors contributed to Jack’s momentum. We were able to change his eligibility category on his IEP from Multiple Disabilities to Deaf-Blindness. We were able to switch to an intervener instead of an interpreter. Daily, we were able to incorporate a GoTalk to provide a consistent and reliable way for him to express pain or discomfort (which is quite common in individuals with CHARGE Syndrome).  

Consistently, Jack’s school has initiated requests to our North Carolina Deaf-Blind Project Technical Support Program to visit the school and provide support and introduce effective evidence-based strategies to his educational personnel. From these visits, the need to utilize the app, Verbally, was recognized and implemented. Verbally has blown open many doors for Jack! Currently, he emails multiple family members which is HUGE! Through the usage of Verbally, he is now engaging in socially appropriate conversations with peers and participating appropriately in vocational opportunities such as running the snack cart at school. Just recently he was able to give the morning announcements at school by using the app. Jack is demonstrating joy and satisfaction and reward and delight from his blossoming capabilities and meaningful interactions. He is thriving!

Jack facetiming a friend.

Our Family's Journey

Candidly, I must admit that none of this has been easy and we are truly learning as we go, each baby step of the way. It is lifelong learning for all of us! Through an evolving level of family engagement, the results have yielded a desirable collaborative spirit and higher level of communication that has been immensely critical to Jack’s success. His team has been willing to be progressive and creative and, as a result, we have seen outstanding breakthroughs. Since Jack’s PCP, the efforts made by his team members have reflected efficiency and been results-driven. In splendid and heartwarming fashion, Jack has been a remarkable and willing participant to everything we have thrown his way and his level of self-determination has skyrocketed!

Our journey continues as we have identified and focused on multiple vocational opportunities that Jack would enjoy following his high school graduation. We have identified the distinct skill sets he will need to acquire and his team is working hard to help him develop and achieve them. We have created a shared Google document for team members so we can be consistent across settings in the development and application of designated skills. We have also established a video resume portfolio on a YouTube channel demonstrating Jack using the acquired skills in various vocational settings.

As graduation looms, we are stubbornly refusing to allow Jack to “fall off the cliff” as he exits the school system. Our architect hats remain permanently on as we continue to draft, erase, and redraft the blueprint for Jack’s life as circumstances warrant. We are in dogged pursuit of a quality, meaningful, rewarding, and engaging life for him. It is our belief that his PCP laid a strong foundation, and we are steadfast in our aspiration to continue to lay as many bricks as possible and cement them into place. Admittedly, we have come miles, but know we still have miles to go. Stay tuned . . .

Jack and his mom.
Jack riding in a boat.