Each special-needs family has different challenges, but there are some concerns that are universal for us. If we could sit down with our pastors and tell them what's on our hearts, it would include phrases like these:
1. We are lonely. We often don't fit in with our peers with kids of similar ages. Our kids' needs keep us home more often (or at the hospital or at therapy appointments). But we long for community. We pray for people to be willing to step into our messy worlds. We may seem like we have it all together, but we struggle in many hidden ways.
2. We wish we could do more. Some church activities just don't work for our families. Even when we want to be there, we may not be able to. (Personally, potlucks are the worst for us! James grabs fistfuls of food and has a hard time staying in his chair. He'll even drink from other peoples' cups or steal cookies if he gets a chance!) Our kids can't always run around like the other kids when the adults are busy volunteering or helping out. We really want to be involved and help more, but it isn't always feasible in the season we're in.
3. We know you can't control every church members' reactions to our family, but you do set the example. How you talk about families like ours to your deacons, elders, and/or ministry leaders trickles down to how everyone treats us. If you welcome us with open arms and an accommodating spirit, the church (for the most part) will follow your example.
4. How you talk about disabilities from the pulpit makes an impact on us. Are people with disabilities only talked about when they overcome obstacles or are healed? Do you use insensitive language like calling someone "crazy" or saying "there was something wrong with him" in your sermon illustrations? Your language can make us feel welcome or not. (And this includes the language of your staff. I've had to call out multiple youth ministers for using "retarded" to describe people. Not ok.)
5. The challenges we face as our children grow up change and evolve. What works for a three year old with autism doesn't work for a thirteen year old with Down syndrome or a thirty year old with cerebral palsy. We want to feel like a valuable member of the church at each stage. We want our kids to be safe and loved, no matter their ages or abilities. We appreciate when you are willing to change and evolve with us.