Getting the Support I Need to Help my Disabled Son Become his Most Fulfilled Self

by Arianne Campell April 18, 2022

woman smiling holding baby boy

When I was 18, I took a workshop for Latinx college students. We were given an assignment where we had to write a personal mission statement. The series of questions we had to answer in the journals they provided us allowed each of us to come up with our own focus for our lives. It was there that I began to see my life mission as helping others feel that they were worthy of becoming their highest fulfilled selves.

When I decided to become a parent, I looked forward to providing a young person with all the opportunities I had missed growing up, and imparting my skills of independence and perseverance. That dream for this type of parent and child relationship soon changed dramatically when my son, Colin, was born.

My son’s birth, at 25 weeks gestation, forced our family to decide which life-saving measures to take that would ultimately result in lifetime disabilities. When our son almost died on his third day of life, the massive brain bleeds he sustained were diagnosed by the neurosurgeon with the caveat that if he survived this experience, he more than likely would not be able to walk or talk. Eventually, Colin overcame over four-and-a-half months in the NICU and came home to two parents who loved him dearly, had the financial resources to support him, and were excited to create a life of promise for him.

The challenge of parenting a child with a disability caused an unanticipated strain on my marriage, and within three years of his birth we separated and eventually divorced. I wanted to continue my role as a full-time parent, especially given the fact that my son had developmental delays and medically complex needs to advocate for. I realized, as a single parent now, that I would have to create a complex system to provide for myself and my son’s needs simultaneously, all while navigating another complex system of medical care, education, and community services for people with disabilities.

The independence that I had taken pride in cultivating for myself was challenged when I realized that creating independence for Colin would require the assistance of those who understood his disabilities while also nurturing his abilities.

Much as I had done when Colin was born, I made it my mission to research what life would look like for a child like Colin and what he would need to succeed in life. I signed up for any workshop, scoured websites and attended any events that I felt would benefit Colin and our family, and connected with other parents with similar experiences.

In California, we learned that there were many state-provided resources that could assist him in realizing his full potential. Receiving an Individualized Education Plan ensured that he could learn in a public school with any number of supports he required. Programs like California Children's Services and Regional Centers also provide support with healthcare and integrating into the community.

Of these services, none has been more vital than In Home Support Services (IHSS), which provides funding for Colin’s personal care. With this monthly funding, my son is able to live at home and receive personal care support that makes it possible for him to accomplish his daily activities and goals. It allows me to be paid for this personal care work, or to pay someone else to provide personal care while I work outside of the home for higher pay or more benefits.

As both a parent and a care provider, I want to dedicate the time needed to collaborate with Colin on meeting his needs, and begin to help him in building skills for an independent future.

I imagine a future for Colin where he lives independently in an apartment, where he can hire people who understand his needs. I envision two shifts of caregivers coming each day, in the morning to support him in starting his day, and in the evening to help him with dinner and transfer him back into bed. I can see him spending his days working somewhere like Disneyland--where he can be with people and share his joy with others.

Ten years into this journey with him and six years doing it as a single parent, I am finally feeling stronger in my ability to create a life of success for both myself and him. Recently I became active in Hand in Hand, an organization fighting for state and federal investments in Home and Community Based Services and raising standards for domestic workers. Such funding and support will allow me and other parents like me to continue this journey with my son and create the promise of a better future for him.

The independent, interdependent future I dream of for my son is possible only with a robustly funded, well-run homecare system that pays caregivers adequately, provides training and resources to homecare providers and recipients alike, and supports parents in building the skills needed for an independent future for their children.




Arianne Campell

Author



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