Updated: Oct 28, 2021
Hi, my name is Romy, and I have worked for Toward Maximum Independence (TMI) for nearly 10 years as a Supported Living Facilitator for Irene. It has been a long journey. This story is about a severely disabled and non-verbal individual that left Orange County and her siblings to pursue her dream of living on her own. She had struggled through a revolving door of caregivers that were neglectful and had to deal with people leaving her and not being able to feel that she was settled in her life, with a safe and consistent household. Irene was a youthful older woman, sound of mind, but unable to talk and clearly communicate. I met Irene at church and we joined TMI simultaneously, Irene as a client and me as her Facilitator. We have been together ever since. Irene is quadriplegic and requires a high level of care. At first I was unsure of how to completely care for her, but, together, we have managed to communicate and create healthy routines. Irene was treated as a person with disabilities, but I, along with TMI, treat her as a person capable of living a full life, especially psychologically.
Irene is young at heart and very social. I enjoy helping her dress to feel like a youthful older woman. She loves listening to people and getting to know them, as well as listening to the laughter of children. Irene would love to have the ability to speak. As a person who is non-verbal, she has not always been able to communicate all that she really feels over the years. Previously, her inner anger and dissatisfaction led her to feel distrust and sadness toward many people. I have been her longest caregiver, which I take pride in.
Irene is a free spirit, who desires to be treated as a human; something so simple, but at times has eluded her, leaving her feeling depressed and upset. As I became more and more aware not only of her physical limitations, but her emotions, I had to realize that Irene was caged by "words she could not say.” I realized that she did not really know how to spell, but she never admitted to it. She was not taught to use sign language or to spell words on her communication board. Irene looked at me and waited for me to give up on her. Trust me, it hasn’t always been easy, but my life situations and my commitment to never give up on people pushed me to stay in her life. Under TMI Case Manager Monika Driscoll’s directive and support from San Diego Regional Center and her day program, I learned about Irene in a way that others did not. We patiently worked through struggles. We were able to modify and eradicate medications that should have never been given to her. After awful medical emergencies and situations of rejection both social and romantic, I have come to learn how she thinks.
Irene has grown in her own self advocacy. She now stands up for herself and can make her own decisions. She has overcome a deep inward depression. Her anger made her lose her "jois de vivre" (happiness/joy to live). Her relationships at church have grown stronger as she has learned not to just receive, but to give and encourage. Irene has learned to be open with her feelings and understand the side of her feelings that she has conflict with. She has fallen in love a few times over the years and often cries about not being able to have a “normal” relationship. She desires to be held and romanced. Well, we have not been able to find that special someone for her, but we can live vicariously through the show “The Bachelor" and romantic movies. Irene dreams of finding love, but for now she is at peace.
Irene has overcome so much and, despite her cerebral palsy overtaking her body more and more, she keeps a sense of humor and faces life at face value. She is a woman who is "dying to talk,” with a smile that is contagious. Her inner anger has subsided and she is able to have a more positive outlook on life. I am grateful we found each other. Life has dealt us both some ugly cards, but together we have made it through. Our friendship has made me more grateful for the little things. Irene has seen me go through a lot (a divorce, two births of my awesome boys, and lots of health issues), however, we stand by each other. She has learned what a family feels like. I made a promise as a caregiver and friend to never give up on her and to be there in one way or another for her. We say that it was fate we found each other. Despite some disagreements and disappointments, she knows that she is well taken care of. She dresses well. She goes out on fun outings and shops for herself. She wears perfume and makeup. We always get so many compliments about how well she looks by doctors and people in the community. She gives gifts and cards to people to encourage them. She enjoys going to the movies and has a circle of friends that she steadily meets with who have been her friends for years now. So.....that is our story. We decided we are celebrating our 10 year anniversary next year in a grand party! Irene and Romy PS-Also I was able to take Irene to Las Vegas a couple of times. She has rarely traveled. It was a struggle, but we made it happen and we won a jackpot!
An estimated 1 in 6 people are born with a developmental disability. Just like you they are born with hopes, dreams and the drive to contribute to society. Since 1981 Toward Maximum Independence (TMI) has transformed thousands of lives by providing assistance to children and adults with developmental disabilities, giving them the ability to realize their hopes and dreams.