These special parents often feel alone and unsupported
Any seasoned parent knows there’s no one-size-fits-all book or manual written to prepare them for the true journey of parenthood, a rewarding yet daunting experience. It’s common for parents to wrestle with feelings of doubt and uncertainty as they strive to raise happy, healthy children.
This is even truer for parents of children with intellectual, developmental or physical disabilities. Often, these parents can’t seek guidance from other family members or friends because their loved ones, while well-meaning, simply don’t understand. In the end, parents of children with special needs often find themselves feeling alone, with little or no support.
Today is International Day of Persons with Disabilities, intended to raise awareness about the inclusion of people with disability and provide an opportunity to shine a light on the strength and determination parents of children with disabilities possess and the support they need, regardless of that strength. These parents should be reminded that they’re seen, they’re not alone and they’re loved by their Father in Heaven.
In the United States, we’re fortunate to have specialized therapies, schools, and community groups for children with disabilities — much of it courtesy of the Americans with Disabilities Act that was signed into legislation in July 1990. This transformative law makes it possible for individuals with disabilities to participate alongside their peers in education, employment, and entertainment opportunities, among many other examples. They and their families no longer feel alone, like they “are the only ones.”
Parents now join online chat groups, take part in respite care programs or talk to a counselor. Friends and loved ones can extend a hand of support by simply listening or offering the words, “You’re doing a good job.” While these resources don’t entirely remove the heartaches and challenges associated with raising a child with a disability, they do create support for the parents in loving and enjoying their child.
Across the world, many regions lack the services needed to provide tailored support for families of children with disabilities. Furthermore, the culture may reject these families altogether. In developing countries, many children with special needs are discarded or ignored by society, thought to be cursed, placed in institutional care, or abandoned.
Eleven years ago, my husband and I felt called by God to sell everything we had, leave the comforts of America and move to Haiti, where we’ve been honored to serve the Lord ever since. Through the ministry of LiveBeyond, we provide healthcare, nutrition, and education for women and children. As we realized the significant gap that exists in providing love and support to families of children with disabilities, we established the Johnny’s Kids program — named after my brother, who has Down Syndrome.
The fruits of the Johnny’s Kids program in Haiti gave us the confidence to take the program to Israel, near Jerusalem, where we’ve learned that many mothers feel isolated and alone. Although Israel is a well-developed country, the region still has schools that won't accept students with disabilities. The moms and their children are disregarded, largely illiterate, and have no community support. Often, the husbands view the child’s disability as a curse and blame their wives.
The growth of the Johnny’s Kids program in Israel has been a blessing from the Lord. We were able to find and rent a building that is large enough to hold two classrooms for approximately 20 students each, as well as a therapy room and an event space. The vision for the building is to provide an inclusive educational experience that combines physical, occupational, and speech therapy, as well as a day program for children with congenital disabilities.
Perhaps what blesses my heart the most is our next plan to create a Mothers Empowerment Program, a time for mothers to gather, share, discuss, and relate with one another. While we want all children to receive the love, attention, and care that they deserve and need, we also want their mothers and fathers to feel empowered, experience the best in life and reach their full potential as loving parents.
While there's an obvious contrast between America and other nations of the world as it relates to parenting children with disabilities, the special needs of the special needs parent should be remembered always. As Christians, we know that while one child’s development may be different from that of another child, it does not make them less valuable, less human, less important, or in less need of love and support. Their parents, who have a unique calling, believe this more than anyone.
Laurie Stallings Vanderpool is co-founder of LiveBeyond, a faith-based humanitarian organization bringing general medical care, mother and child health care, nutrition, clean water, education, and community development to people worldwide. LiveBeyond has worked in several countries, including Mozambique, Ghana, Honduras and now Israel. In 2012, LiveBeyond established a base in the Thomazeau region of Haiti, with a compound that consists of a guesthouse, a surgical hospital, a demonstration farm, a church, and a school. For more information, see www.livebeyond.org.