MY STORY

Yariela Brandao, President and Founder, byond22

My first child, Yariela de Lourdes (nicknamed Chimbo), was born four months premature. She weighed less than two pounds and spent nine months in the hospital, in and out of intensive care. As a result of her birth trauma she became deafblind.

When Chimbo was just 18 months old, my husband died, and a few months later my second child, Karla, was born. I struggled to cope as a single mom with two children – one with significant special needs.

I had spent the first year of Chimbo’s life loving her, thinking that love would be enough to help her grow and learn. But things got worse. At about age five she became aggressive, lashing out at everyone, including herself. It was her way of communicating “Help me understand the world.”

I moved to the United States with Chimbo (then 12) and Karla. Fortunately, Chimbo was accepted to the Deafblind Program at the Perkins School for the Blind in Watertown, Mass. It was a dream come true! She received one-on-one care and training there for many years.

When Chimbo was 17, I began to see a huge improvement. She was out in the community, and friends and neighbors would tell me that when they saw her at the grocery store or other business, she was very busy. Karla said to me, “I am so glad we are here with Chimbo, she has changed so dramatically.”

But just when I thought our lives were getting better, a teacher mentioned that I needed to prepare for Chimbo’s transition out of Perkins, and asked me what I had in mind for her. I was shocked!

“Transition? To where?” I asked. My heart and my mind were closed to that possibility. I felt sad. I was worried. I couldn’t sleep. It was horrible to imagine Chimbo in another place, full of uncertainties, surrounded by much older adults. In my drive to keep her safe and learning, I had convinced myself that she could stay at Perkins indefinitely.

It took me another year to fully grasp that transition was not a choice – it was the law. At age 22, young people with special needs in Massachusetts (and many other states) lose their entitlement to special education services and enter the world of adult human services. Through their parents and guardians, they must apply and qualify for benefits – and hope that funding will be sufficient to meet their needs. Funding is based on the type of disability and is much lower than funding available in the school systems.

I had many questions, and the choices I faced were overwhelming and confusing. I was particularly anxious about what Chimbo would lose when she left Perkins: a structured classroom full of tactile items, an entire communication system, some friends, a consistent routine, one-on-one support, a behavioral therapist, a mobility instructor, training in residential living skills, and so much more.

I visited many group homes, all of which rejected Chimbo. Group homes wanted clients, but they did not know how to help Chimbo and did not want to accept responsibility for her care, especially because she was deafblind and needed one-on-one support. They did not have other clients like Chimbo and did not know how to communicate with her to help her.

After receiving repeated negative feedback and analyzing the reasons why Chimbo was being rejected, I decided to try a different approach. I stopped focusing on what the group homes said they could and could not provide. I began to focus more on Chimbo’s strengths and abilities, rather than on her weaknesses.

I compiled a detailed list of all the things that Chimbo could do and created tools to train providers and caregivers. All of the tools – including write-ups, pictures, and videos – were incorporated in a website that was instrumental in obtaining funding and training group homes, helping them understand Chimbo’s abilities and needs. The strategy worked! I wanted to cry, and I still tear up when I remember that day.

Today, Chimbo is still attending that same program. They have followed through – they take her to all her activities as described in the video, and the staff is very supportive. Chimbo loves her caregivers. She continues to enjoy her adult life. Her schedule is well rounded, with community volunteer work, residential support, day programs and much more.

On the same day that Chimbo was accepted into her adult programs and began her transition from Perkins, byond22 was conceptualized in my heart. I wanted to support special needs transition teams, especially parents and guardians. I wanted to give back. I wanted other young adults to be successful.

Please donate to this wonderful cause.

God Bless!

byond22, Inc. is a (501(c) (3), nonprofit organization focused on its mission: to help young adults with special needs reach their goals and transition to happy, productive adult lives.

Board of Directors:

  • Yariela Brandao (president / parent of deafblind young adult)
  •  David Weaver (vice president)
  •  Margaret Fredrickson (treasurer)
  •  Mona Jomaa (secretary / parent of blind young adult)
  •  Victoria Staebler
  •  Elaine Haney
  •  Kaurik Raj

Advisory Committee:

  • Barbara Slattery – Mother of a young adult with special needs
  • Susana Covan – Special Needs Teacher (deaf-blindness), ABA Therapist supporting children with autism
  • Ileana Gatica – Mother of a young adult with special needs, MD, MPH, President MAPVI
  • Clara Berg – Mother of a young adult with deaf-blindness, Ex-President National Family Assoc for Deaf-Blind
  • Anita Khoury Chamoun – Mother of a young adult with autism, Pharmacist

Volunteers:

  • Parents, caregivers and group home staff (to volunteer, please contact us)