This is the first in a series of posts written by a mother of a son with autism, reflecting on her experience with her church community. Some of her observations serve as challenges to the way we do church, while others should be encouraging to the people who have made a difference in the lives of her and her family.  The names in this story are fictional, but their experiences are not.

This message was in the making for a couple of days…time alone is rare.

I was going to focus on the disabled person and ‘belonging’ but the issue is bigger than that.  In cases like ours, the family itself might not feel like they belong in a church or community, let alone the disabled member.  Each disabled person’s needs are unique and this affects the family dynamic.  In our case, our son’s disability is so severe that there is no programming that fits his needs.  In our church community there are not many family events and even when there are, few to none of them are suitable to take Michael to.  It’s not that he’s not welcome, but we get exhausted and stressed just thinking about managing him at events that aren’t tailored to his needs. The pressure we feel to show up at some events doesn’t help the situation. Each family with a disabled member has their own set of circumstances, but in our case we have the added stress of a family member with terminal illness and the challenge of living in poverty.

All this being said, God has been good.  Yes, living like this is tough but we really do see the Lord providing.  We can no longer take things for granted.

There are blessings along the way.  Our children’s ministries pastor is fabulous and one of the few people that consistently went out of her way to try to accommodate our son and even us! I think, though, that I finally helped her to understand that the programming wasn’t geared to Michael. Even aside from his severe autism, Michael’s developmental delay and super hyperactivity would be a challenge for anyone to try to keep him interested in programming that wasn’t for him.

Our church has supported us through prayer, financial aid and food or food vouchers and occasional visits.  We also have a deaconess who is totally amazing, and she is the first person we’d call for anything!

But do we feel like we belong?

My husband, prior his illness, was involved in church groups, greeting, men’s retreats and various activities.  He has made acquaintances and he has a few men who check up on him occasionally or invite him to events, but even then it would tough to say he has a ‘friend’ at our church.

When we first came to our church we were involved in adult Sunday School immediately but then, within the first two years, I had two babies back to back.  Within three years it became clear that our son had Autism.  Life got exponentially busier, my husband wasn’t well, and within five years he underwent a series of liver infections where he was continually in and out of the hospital. This led to a diagnosis of cancer three years ago. By then, most of our family members were out of the picture for various reasons.  I had chosen to be home with son and neither of us had made any close friends.

At that time, my husband and I could have traded off attending church on Sundays (as everyone who really doesn’t know us is quick to point out!), but my husband can’t be left alone for long periods with Michael in the house because he doesn’t have the energy or stamina to check up on him.  He loves his dear son but at this point he’s always fatigued and falls asleep regularly.  Father and son are best together in the car or on walks where our son is the easiest to manage.

Our reasons for not taking part in church events regularly are as simple as being ill, exhausted and not having the time or appropriate care for our son to be involved.

All of this to say:

Whether or not you have a child with a disability, if you are not involved regularly in a church community – for whatever reason – you will be on the fringe.