Celebrating Strength This Mother’s Day: A Mother’s Persistence
This Mother’s Day, The Arc celebrates the unconditiona
l love and infinite strength of mothers. We recognize the mother figures and grandmothers who nurture and support us – no matter what. We embrace the challenges of motherhood. We revel in the joys.
If you ask Kendra Mendoza, a mother of two in North Providence, Rhode Island and friend of The Arc, what her role as a mother means to her, the answer is clear.
“It means everything to me. It is my sole first purpose in this life – being a mom,” she shared with us.
Kendra is a mother and a fighter, a force of nature to be reckoned with and admired. The single mother has taken on the state disability services agency, school boards, health care providers, and landlords. Kendra stops at nothing to make sure that her 17-year-old son Joshua receives respect, compassionate care and support, and opportunities to thrive in school and beyond.
Joshua was born with a rare genetic disorder and several other developmental disabilities. He requires complex medical care and supervision around the clock. Kendra says he is a blessing.
“Whenever I look at Joshua, I see ability and potential,” she said. “He has taught me so much. He takes life and smiles through it.”
Joshua underwent brain surgery at two days old. He has had two more brain operations since. With his mother by his side every step of the way, Joshua has far exceeded doctors’ expectations.
Joshua lives in the moment. When asked for this story during breakfast what he loves most about his mother, he replied: “You feed me!”
Eating is one of Joshua’s favorite activities. He is known at his local Wendy’s and Dunkin’ Donuts. Joshua also loves reading and art. He enjoys playing Memory on his tablet and going on car rides and walks to the store. He likes listening to music, especially John Legend and Ed Sheeran. Joshua helps out around the house, clearing the table and putting dishes in the sink, as well as tying up the trash.
Kendra’s determinatio
n as a mother extends into advocacy. Working with The Arc Rhode Island, she advocated in the General Assembly in support of special education reform to give parents and guardians more rights in the Individualized Education Program, or IEP, process. In testimony before the Rhode Island House of Representatives, Kendra and Joshua shared challenges with the IEP process for families and why is critical that students with disabilities receive a Free Appropriate Public Education, or FAPE, as mandated by federal and state law. Kendra is also part of a group of parents, guardians, and educators in Rhode Island advocating for the creation of an independent special education ombudsman office to investigate special education disputes and serve as a resource for parents and guardians. The office would also provide an outlet for anonymous reports of possible violations.
In her advocacy, Kendra has worked closely with Joanna Scocchi, Director of The Arc Rhode Island.
“Kendra is an example of the many parents who are fighting not just for their own child, but for all children to lead a full life with opportunities, hopes, and dreams,” said Scocchi. “It takes the determination of parents and advocates to advance the goal of ensuring that society understands every child is entitled to – and deserves – an education that meets their unique needs and prepares them for further education, employment, and independent living.”
Like so many mothers, Kendra manages to persist, one battle after another, but always with the nagging feeling that things should be easier. It’s nearly a universal feeling across the disability community.
“I don’t understand why we have to fight all the time for things that should be common sense,” said Kendra.
Since the start of the COVID-19 pandemic, Kendra has worked closely with Joshua’s IEP team to try to ensure that he continues to receive an education remotely. People with intellectual and developmental disabilities are at higher risk of contracting the virus and health outcomes are often worse. Trying to keep Joshua safe and in virtual learning has felt like a second and third job. Kendra hopes Congress passes a national paid leave policy so that unpaid family caregivers don’t have to choose between a paycheck and the health and well-being of their loved ones.
The Arc and many other groups that represent caregivers urged the White House and Congress to include paid leave in forthcoming legislation and President Biden has urged Congress to do so. The pandemic has highlighted what family caregivers have known for decades—we need paid leave now.
There is one more thing about Kendra Mendoza you should know. When she’s not with Joshua, she’s supporting women with disabilities in a group home. Kendra is employed as a direct support professional, or DSP. She helps the women she serves with dressing, eating, and preparing for their day.
Many years ago, Kendra decided to pursue a career in health care in order to learn as much as possible about the road ahead as a mother to a child with multiple disabilities. This Mother’s Day, she reflects on her children and how she is the lucky one.
Kendra says the simple moments mean the most.
“The moment your kids smile and they know they’re safe,” she said. “They remind me of my purpose. They push me to grow as a person.”
Steve has cerebal palsy. For most of his young life, and like many people with disabilities, he lived with his mom. When Steve was only 22 years old, his mom became very ill. Because she could no longer provide the supports he needed, Steve was forced to move into a nursing home to get the care he could no longer receive in his childhood home. Even though Steve knew he could make it in the community with the right supports, he was forced to make this move. This was because his family was concerned about his well-being if he lived independently, and because they feared the appropriate supports were not available to him.
There were no supports available outside of the public schools and the schools were not prepared to serve children with high levels of need. When my brother was kicked out of school at a very young age (before the federal law ensuring a right to education) for his disability-related behaviors, he had nowhere to go except home all day with a very loving caregiver. He missed the routines and rhythms of school and had a hard time staying home while everyone else went to work or school daily. He waited all day for the staggered returns of kids and parents, dinner, and then his beloved ride to the drugstore for a Coke and a long drive listening to rock and roll and beach music on the radio. Jud also had daily trips to the Post Office with our Dad to pick up the mail for his business, trips to the barbershop, church on Sundays, other local gathering places, and a house full of our friends and exchange students who lived with us at various times. He loved all the interaction and was known all over town.
Sadly, as each of his older siblings began to leave home for college, military service, or otherwise, Jud’s physical size and his inability to control his frustrations and emotions became dangerous for our aging parents. After much searching and trying many approaches, the only available service for someone with his needs was the state institutional system. This was devastating for Jud, for our whole family, and for the many friends who had known him over the years. Jud suffered greatly from the travel distance from his family (even though we visited regularly), home and hometown, friends, and routines. And while there were some wonderful staff who supported him in his new location, we were horrified to learn that he also suffered some terrible abuses– the kinds of things that can be hidden when people who are unable to communicate or be understood cannot tell others what is happening to them. My father found that Jud had been burned with cigarettes and that other men in his unit had been more extensively burned. In other incidents, men in his unit died after being subjected to dangerous restraint methods. He also suffered from toxic environmental conditions, including asbestos and sewage leakage. As a family, we were determined to end these abuses.
Jud’s experiences fueled my passion to change the system. I worked in Washington to pass federal legislation to move the Medicaid funding bias away from institutions and to build the community service system, making the community the preferred service setting. My advocacy led me to a career in The Arc’s national public policy office, which I joined in 1984. While our systems have evolved since the 70s through the late 80s when my brother was experiencing so much pain, we still have a long way to go. I am happy to report that Jud was eventually able to leave the state institution and live in a group home about 7 minutes from our widowed mother in his beloved hometown for the last 20+ years of his life. Jud also experienced some serious problems in his group home, but those were able to be discovered and remedied because family were nearby and able to observe how he was doing. For those who understood him, Jud continued his mantra: “Stay at the new house; not gonna keep saying it” throughout those years, lest anyone think he would ever want to go back to the institution.
