The powerful emotion which led to the creation of Arc
Anyone raising young children would agree that at times it can be overwhelming; helping someone eat, dress, bathe and the seemingly endless years of changing diapers. However, for those with fully-abled children, there is a light at the end of the tunnel as the years of dependence will gradually come to an end as children gain their independence. But for some parents, such as Marilyn McCombe and Frederique Vincent, this isn’t the case.
These are just two of the countless mothers who will be life-long caregivers to their children. Both of their daughters were born with Down Syndrome and have cognitive abilities which will not develop much beyond those of an elementary-aged child. This means the years of helping their children eat and bathe themselves will simply never end.
“When you have your newborn and you are visiting hospitals with children with a wide spectrum of disabilities, your eyes begin to open,” says Frederique about her experiences when Camille, now 23, was born and required open-heart surgery at only three months of age. “This was not what I signed up for. I was young, and I was pregnant. I didn’t know anything,” she continues.
Advocacy, it turns out, begins in the hospital. “A woman with a child only a few years older than Camille saw me and my confusion; she helped me navigate the unfamiliar world I was now a part of. She told me, ‘It will get better’, and it did,” says Frederique who now in turn has similarly helped many young mothers.
Marilyn’s daughter Jenna, a senior at Kettle Run, has endured both knee and hip surgeries in recent years. Marilyn couldn’t let other people fight the battles for equity she had fought: “After every obstacle or small victory, I would think, ‘No one should have to do that.’” Marilyn set out to make change.
When asked about their experiences in raising children with a disability, the most accurate description they share is frustration; not for the child, but for the system. “A rage against the machine,” says Frederique who fights a near-daily battle for her daughter’s civil rights and basic quality of life.
Marilyn co-founded Arc of North Central Virginia in 2011 and became president the following year. Frederique joined the organization in 2013 and is now the secretary for the organization. Arc’s biggest impact has been increasing the awareness of discrimination against those with disabilities in our community. “Educators, and really everyone, often do just enough to be compliant [with the law],” says Marilyn. “But compliance does not mean equity. Equity does not mean equality. Equity is about leveling the playing field by ensuring the supports needed are in place to enable equal access.”
Marilyn raised Jenna in Colorado for four years prior to relocating to Fauquier County in May 2003. She knew the value of having her daughter in the mainstream school population, but Fauquier County thought otherwise. “One of the first battles I had was to make sure Jenna had time with her typical peers in preschool and was not isolated with the students with disabilities. After all, how is she supposed to talk, for example, if she is surrounded by other students who are nonverbal?” Both women have dedicated their lives to their daughters’ basic human rights. These ladies are community leaders and have each attended Leadership Fauquier with the hopes of expanding the local reach of their message. The battles never end.
Caregivers to special needs children often lose dreams they once held; those of retirement and years of independence when their children are grown. “Some parents become resentful, others become depressed, and nearly all put their own health on the back burner,” says Marilyn. “I cannot leave my daughter alone at any time, so it takes planning for me to be able to exercise, visit a doctor, or do anything for myself,” echoes Frederique who raised her three children as a single parent.
The connections to caregivers experiencing the same thing are made through programs such as Arc, and are invaluable. “If it weren’t for the circle of friends I have who know exactly what I am going through, I don’t know where I would be,” says Marilyn, who admits that while appearing to have it all together on the outside, it is not the full picture.
With both their daughters nearing adulthood, the women ache for futures which all parents wish for their children; to be lifelong learners, engage in personal growth, and connect with others in meaningful ways. “Camille is an intellectual. She loves to learn,” shares Frederique. And Marilyn says, “Jenna loves people and is very social.”
The message both mothers are eager to convey is that just as their outward appearances do not offer a complete picture of who they are, the same can be said for their daughters. Because, despite their daughters’ differences, they possess far more likenesses to everyone else which are worth getting to know.
In 2018, Arc of North Central Virginia now offers Caregiver Cafés in the five-county region. The cafés are designed specifically for caregivers of elderly individuals and those with children with disabilities. Details of upcoming Caregiver’s Cafés may be found on their Facebook page. Small, intimate groups will work together to discuss the five protective factors:
- Resilience: Parental resilience
- Relationships: Social connections
- Knowledge: Knowledge of parenting and child development
- Support: Concrete support in times of need
- Communication: Social and emotional competence of children