Advocacy: A mother’s perspective

“Come to me, all you that are weary and are carrying heavy burdens and I will give you rest.  Take my yoke upon you, and learn from me; for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.” (Matthew 11:28-30)

The burdens and challenges of being the parent of a child with disabilities can be overwhelming.  People will often comment, “God chose you to be the parent of a child with disabilities because you are such a wonderful person,” or, “You handle things so well.”  Their comments on the “gift” feel as though they are really saying, “better you than me.” Sometimes the “gift” of a child with disabilities feels a lot like being a thirteen-year-old and getting a birthday present from Great Aunt Florence of frilly, pink ballerina pajamas. Yes, it is a gift, but not one you asked for, let alone a gift you think you might want.

In my work with parents of children with special needs, it doesn’t matter what their faith traditions are. Parents want their children to be nurtured and included in their faith communities.  Parents are not only weary and heavy laden from the day-to-day job of caring for children with disabilities, but also from advocating with the school system, the medical system and the disability service provider system. The last place parents want to use their advocacy skills is at church. I have heard, “I just want to go to church without doing an in-service on “Molly” every time we are there.” “Sunday school is only an hour. We care for “Craig” every day. Can’t you figure out how to include him for an hour?”

During baptism in the Presbyterian Church, the congregation is charged to nurture and love the child and to assist him or her to be a faithful disciple. A wise mother pointed out that there is no clause in the congregational charge that says we promise to nurture and love the child and assist her to be a faithful disciple “except when the child has a disability” or “when disabilities make it too hard to include him.” 

Congregations need to work together with parents to maximize the inclusion of children with disabilities. Parents must communicate their goals for their children. For some parents, it is more important that their children learn the love of God than to be able to recite all the books of the Old Testament. Families should share what works best to include their children. For example, “Sam” listens better when he can be doing something with his hands. Loud noises scare “Mary,” but she loves music so have her sit near the back of the room, not in front of the piano. “Tina” needs a buddy to find a ride in the junior high carpool to the soup kitchen. Chances are, adjustments that will be beneficial for the inclusion of children with disabilities will help other children as well.

A good way for parents to share their children’s ministry needs is through an annual church school registration form. It can include these questions:

• How does your child learn best?
• What do you want us to know about your child?
• What are your goals for the year?

Since all parents fill out the form, children with disabilities aren’t singled out. The church school staff has a basis for meaningful conversation with the parents on how to include their children. 
 
Congregations need to listen with open hearts and minds and not put the burden of inclusion on the parents. Parents have a right to be in worship, not glued to their children. They should help, like any typical parent, with cutout nights, driving to bowling events or helping to sell car wash tickets, but they don’t need to do everything with their children. What child or young adult wants her parents around all the time?

Parents want children to grow in faith so that they will have a foundation for life. Parents of children with disabilities are no different. The desire for their children to have a foundation for life and a place to belong is apparent whether the child is two, twelve, fifteen, twenty or fifty years old. Being truly included as members of the Body of Christ has no age or disability provisions.

How is your congregation sharing the yoke of parents of infants, children, and young adults with disabilities?      

— by Susan L. Nettleton

Susan is a lifelong Presbyterian. She is the Finger Lakes Regional Coordinator for Parent to Parent of New York State. Parent to Parent connects and supports families of individuals with special needs. She and Jack are tireless advocates for Sarah.