5 Things Special Needs Families Wish the Church Knew

Hey, friends.  I am crowd sourcing for a piece I am writing on what special needs families wish the church understood.  Would love to hear any thoughts you have on this.

I threw the above post out of social media, not knowing quite what to expect.  It struck a nerve.  I heard back from friends, strangers, believers and non-Christians.  The responses represented families of the medically fragile, the severely developmentally impacted and the high functioning autistic.  While the data collection was by no means scientific, it's important for modern church leaders to know what I learned.  Because what I found was pain and festering wounds.  Not all the parents who shared with me were negative, but the majority of the correspondence left me weeping for the overlooked and underserved.  One mom told me that church has been the "hardest place to take my child for the last 19 years", while another confessed that she has had to fight more for her child at church than she does at school!  Then that same mom also wisely added that she thinks, "people WANT to be caring but they're just clueless." 

I heard from people who had such negative experiences that they no longer go to church, or they have a member of the family stay behind with the special needs individual every week while the rest of the family attends.  I listened to stories of lost faith in God because of the actions of people.  Stories that would curl your toes.  A member of church leadership told one woman that her son had seizures because of her own lack of faith.  Another was told she could no longer bring her child to the nursery because the volunteers threatened to quit if he continued to come.  Still another family, finding no one in the church willing to care for her child, sourced her own help and brought a sitter with her to church so she could enjoy an hour of peaceful worship and bible study - only to be told there was no place for her child and sitter to be.  No room anywhere available to them. 

I write this more cautiously and prayerfully than just about anything else I have written.  It's important, and I hope my presentation of the material is tantamount to the stories and feelings I've been entrusted with.  The church I currently attend is finally exploring how to better serve the special needs community, and I want to be a part of the discussion.  For those who opened your hearts and hurts and victories for this information, I cannot thank you enough.  It is from your stories, and my own personal experience, that I have narrowed down a few common themes.  This is by no means a comprehensive list, but here are 5 things special needs families wish the church knew:

1.  Just because we look fine, doesn't mean we are. 
We adapt to our circumstances.  We accept limitations and we learn to find joy in our children, but that doesn't mean it's easy.  We may show up with our hair and clothes looking right, but we may still be worried, stressed, tired, or all of the above.  And the adaptations and limitations we live with can sometimes make us feel very alone.  How we look on Sunday may not be an accurate depiction of the rest of the week.  Ask us out for lunch or coffee and find out. 

2.  Our challenges are constant. 
Most churches are pretty good in a crisis.  When a parishioner has an accident, a cancer diagnosis or a death in the family, the body swoops in with prayers and casseroles and offers of assistance to get a brother or sister over the hump.  But when you have a child with special needs, you never make it to the descent.  There is no coasting.  We keep climbing an insurmountable hill, and some hiking buddies could very well be a life line.  Many of us could complain constantly, but we won't.  And if you ask us how we are, most days we will answer "fine".  But we need those check-ins.  Learn to ask specific questions.  "How is your daughter's new medicine working?"  "Is your son sleeping any better?"  "Is he getting along any better in school?"  "Are her seizures improving?"  When you put some thought into what you know about us and ask these kinds of questions, you might actually get to know us. 

3.  We need a break. 
Due to complicated medical issues or behavioral challenges, it can be extremely difficult for us to leave our children in someone else's care.  One mom shared with me that when her family moved to a new state and joined a church, one of the first things the pastor's wife asked was, "when was the last time you had a date night and what would it take for you to feel comfortable leaving your kids with someone?"  If everyone could be so sensitive and intuitive!  The pastor's wife emailed several nurses and a couple of teachers who all volunteer to babysit once a month on a rotating basis.  In addition, she checks in on them, invites them over and has become a true friend.  This family described her as "Christ's love in action to us!"  What a difference one woman has made for this family. 

Respite - or date nights - is one of the most appreciated ministries a church can have for special families.  But it's not the only way to provide much needed rest.  Having a safe and welcoming environment for the kids (or young adults) so that mom and dad can have a quiet hour in Bible class or church may be just the mental and emotional break needed. 

4.  We want to be involved members of the church, not a problem to be solved. 
My husband and I struggled when my daughter was in elementary school with appropriate bible class placement for her.  It was awkward to have her in a class with her developmental equals because she was so much bigger than them, but she could not properly engage and participate with her same age peers.  The classroom teacher decided that either my husband or I needed to be in class with her every week - meaning that one of us would always miss adult class and fellowship and we would never be together.  Then an Elder, a lay leader in the church, stepped in.  He wiped tears away as he told us that he would like to be Shelby's bible class buddy and that it would be a true honor if we would allow him to.  We will never forget how loved and included we felt to have someone of his position minister to us in this way.  And although we no longer attend that church, the Elder and his entire family remain treasured friends. 

As my daughter Shelby grew older, we recognized a gift of hospitality in her.  She loves people and greets those around her with a pat on the shoulder, a hug or a high five.  We asked if my husband and I could help her stand at one of the doors to the sanctuary to welcome those coming in.  This was not a position created for Shelby, it was an ongoing volunteer job that she was allowed to participate in.  And I have had more than one person tell me that my girl was the first person to greet them when they visited the church and how much it was appreciated.  More inclusive activities and meaningful ways to serve can help foster feelings of belonging and acceptance for families with children like mine. 

5.  Last - and maybe most important - almost all people regardless of the level of disability, desire meaningful socialization. 
My daughter, a senior in high school now, will walk across our church stage on Senior Sunday with a group of kids and a youth minister who do not know her, because she has never been included in the high school ministry.  At only 21 months of developmental age, she doesn't understand that she is excluded, but I do.  And she loves to be around kids her own age, but has not had that opportunity at church.  Other, higher functioning kids do understand that they are different - but they still want true friends, not just acquaintances who say "hello" as they pass by to sit with a more desirable crowd.  One teenager I know personally told his mom just last Sunday, "Church is supposed to be a place where you can go, that is loving and caring.  Where you never feel alone.  And that's not what it is." 

We expect the world to shun us for being different, but not the church.  Youth and children's ministers are missing an enormous blessing for themselves and rich experiences for everyone involved by ignoring this issue.  Children and youth who are mature in their beliefs should be mentored to be buddies for those with special abilities.  I can only begin to imagine how far reaching the reverberations of this could be for the entire church who choses to implement a buddy-type ministry. 

Well, that brings my list to conclusion, but I hope it's not the end of the discussion.  I think many congregations are afraid to start a special needs ministry because the task seems daunting.  And while it's true that there is no one-size-fits-all blueprint for ministering to this population, it's simpler to get started than you think.  You don't have to have a special education expert.  The parents are already the experts on their children.  And we don't need grand gestures.  We just need you to recognize the opportunity and meet us where we are.