On March 29 2012, my life was changed forever. That was the day that my wife gave birth to our fourth daughter, Eden, who was unexpectedly born with Down syndrome. Through the initial pain of the diagnosis, coupled with a long road of medical complications, the Lord opened our eyes to the ugly idolatry of our hearts for a seemingly “baptized” American dream for our children’s lives. But in doing so, He also opened our eyes to a whole new ministerial world by giving us new lenses through which to see… lenses as parents of a child with special needs.
Prior to Eden being born, I had no idea that 85% of families who have a child with a special need are un-churched. This renders this beautiful group of families, as an essentially unreached people group. When one pauses long enough to think about the reasons for this, it is easy to understand. Parents want to ensure their child is going to be well cared for. As a first time guest it is hard enough for a parent to leave a “typical” child in a stranger’s care, let alone for a child who is medically or developmentally fragile and possibly non-verbal.
Yet another reason this group of families are an “unreached people group” is because many churches have never taken the time to think and pray about ministering to a child who has a special need of some sort. Thus they are unprepared. Still other churches are just scared. Some even act annoyed, or put out, or like these children and their families are not deserving of effort. I have actually heard stories of families being asked to not come back because their child was too disruptive, loud, messy, touchy, etc. Thus families decide that either attending a church gathering is too difficult, or worse they conclude, that while churches claim to be for the hurting, it’s only for a certain kind of hurting person… a person that won’t take that much effort.
This is antithetical to the gospel. It is antithetical to King Jesus who said, “Let the children come to me.” It is antithetical to the “imago dei” that God has imprinted on every human being regardless of stage of development in the womb, age, ethnicity, socio-economic status, or special need. Ministering to individuals with special needs is indeed a “sanctity of life” and gospel issue just as much as fighting for the unborn.
The question then is how do we do this? Here are 3 things that our little church has found helpful in seeking to reach this “unreached people group.”
Learn the Language
Like all faithful missionaries, you must understand the language, even very basic verbiage. For example, don’t refer to a child who does not have special needs as “normal.” Refer to them as “typical.” To refer to a child as “not-normal” plants a destructive seed in their heart and soul.
Additionally, refrain from terms such as “Special needs kids.” It is instead much more preferable to say “Individuals or children with special needs”. You see Eden is a not a Down syndrome kid, or Downs kid. She is just a kid who just happens to have Down syndrome. But, Down syndrome is not who she is, it does not define her; so don’t stick a label on her. Let’s beg Christ to define all our kids, and let that be the label that we attach to them.
These are small wording tweaks, that will communicate much to parents and guests that your church is at least attempting to learn the language. And obviously strike the “R” word from your vocabulary. It is offensive in any and all settings, even when used in a self-deprecating fashion.
Learn to Listen
Parents are the experts on their children. Listen to them! Work with them to sketch out what would be best for their child. To help accomplish this and speaking the language, at our church we have coopted the “IEP” – Individual Education Program of the public school system and turned it into an “ISP” – an Individual Spiritual Program. We especially emphasize the first two letters for the acronym.
- Individual because each child with a special need is unique with different strengths and challenges. Thus one-size fits all approaches will not prove helpful.
- Spiritual – ministering to an individual with special needs is not baby-sitting time. It is ministry! Teach them the Word! Point them to Jesus!
Develop a Culture of Inclusion
The heartbeat of humanity is to be included. This is true of individuals with special needs, and has been proven to be most effective for helping them reach their full educational and spiritual potential. It’s all about community! Therefore, in consultation with parents through the ISP, our typical practice at Providence is to include all of our children of all abilities as much as possible in age graded settings and pair them with an adult or older teen buddy to help assist them if needed.
If an individual with special needs or a family who has a child with special needs should feel welcome, wanted, and included anywhere… it should be in the church. Keep this and these 3 preliminary steps in mind as we celebrate “World Down Syndrome Day” on March 21.