This essay is adapted from a speech Tracey delivered at Deafblind Awareness Day, an advocacy event held at the State House on March 29. Many parents in Massachusetts rely on state-funded programs and services to ensure their children with disabilities receive the educational and developmental support they need to thrive. Read a full recap of the event »
I am the mother of Ashley Riva. Ashley is 23 years old. She was born with CHARGE Syndrome, is profoundly deaf and although she has some functional vision, Ashley is legally blind. She has a heart defect, sleep apnea, anxiety disorder and suffers from obsessive compulsive disorder (OCD).
When I look back to the day Ashley was born, with all the confusion and unknowns of what her life would look like and my parental role, it was very overwhelming. Taking care of her physical needs, not knowing if she could see, many visits to many different doctors, hospital stays, learning American Sign Language, finding out how to advocate for her, getting her into the right schools, navigating IEP meetings, taking care of her older sister and attending to her needs, working and taking care of a home – this is the reality for mothers of children who are born with needs different than what we are equipped to handle on our own.
This is why schools like Perkins School for the Blind and The Learning Center for the Deaf and agencies like The Massachusetts Commission for the Blind (MCB) and The Massachusetts Commission for the Deaf, along with other agencies and professional ASL interpreters, play such an important role in the life of our family. These schools, agencies and professionals are a major component supporting the needs of children who are deafblind and their families. They have the knowledge and the skills to help us help our children.
Later, we started planning for Ashley’s life as an adult when she would transition from Perkins into adult life. The schools of her childhood had played a critically important role in preparing her for adulthood until age 22 when the support systems become significantly diminished. Transition is change and change is sometimes very difficult. Ashley really struggled with her anxiety at this time in her life. But with the help, love, encouragement and support she received from everyone at Perkins, MCB, family and friends she persevered through it.
While attending Perkins, Ashley experienced many different job opportunities that helped her figure out her likes and dislikes. In the area of orientation and mobility, she learned how to navigate the outside world more confidently and how to communicate with the hearing world through technology. She also had her first experience being away from home and family while living at the cottages on campus, which had been a big fear of hers. She conquered that fear.
After graduating from Perkins in 2016, MCB supported and funded Ashley’s attendance at the Helen Keller National Center on Long Island. There, she learned about interpreting, SSP, vocational opportunities, advocacy and empowerment, low vision devices, guide dogs and emergency and disaster planning. She lived in one of their apartments on campus, which was a wonderful experience in exercising her independent living skills. She traveled independently in the community, shopped, prepared meals for herself, maintained her apartment, developed her time management and budgeting skills and advanced the resume she had started at Perkins.
With the resume that Perkins and Helen Keller National Center helped Ashley develop, she was able to successfully apply and interview for gainful employment and is now working part-time utilizing the skills she gained while at Perkins and Helen Keller. Throughout that process, MCB was instrumental in providing supports such as advocacy, interpreting services and job coaches. We are all so proud of you Ashley. You did it!
As you can see, there are many different factors and agencies that have helped Ashley along her journey to become who she is today. This is why it is crucial to continue funding programs like MCB, special education and deafblind services. There are many children who, like Ashley, are deafblind, and the hope is that they too will have the opportunity to succeed. Please continue to fund these programs.
I’d like to thank everyone from Perkins, MCB and the many professional ASL interpreters who advocate for our children with deafblindness. Thank you for giving Ashley the opportunity to succeed in life. I’ve learned so much from all of you. I could never have done this alone – it takes a village.