When Church & Special Needs Do Not Mix

 I attended church alone this past Sunday. My church started a 9am service and I love it. My family rarely attends so I’ve been attending with my father, where we try to take weekly church selfies. I’ve been attending the church on and off for almost 17 years. When I was pregnant, a friend and my husband stopped by to buy pumpkins from the 50s-looking church. I would have gone but I was at home napping I’m sure, while I was growing a baby brain. We had tried a few churches, Methodist churches and hadn’t landed anywhere yet. The pumpkin sellers – Dot and John – invited us to attend worship the next morning. We did and were smitten.

We were smitten by the people. The people were extremely welcoming, in fact, they still are. When the kids were little we were very involved. I taught some Sunday School, I helped plan an Easter Celebration Picnic for the church, which included a very large, fun egg hunt and games and cookout. When our daughter was born and diagnosed with ARPKD/CHF the church surrounded us with prayers, love, food and support. They began a healing service which would last years. They were always there. Attending church on Sunday was a joyful event and attending Wednesdays was just what we did for whatever program was going on that usually involved eating dinner with the congregation. My parents joined the church a few years after we started. I reason they did it because the people in that church loved them right in.

It was a special place. Our daughter roamed the isles on her walker, members of the church routinely prayed for her health and let us know is various ways. When our son was diagnosed with the same disease they showed us tremendous caring and love. When our son was little and unruly, most of the members – young and old – just let him be him. We’d learned over the years when he was anxious, he would retreat. Sometimes it would be under a pew, or a table or on an empty row where he could lay down. They accepted him, just the way he was. During those days there wasn’t a way to contain him or control him. We would just make sure he was safe, try to distract and hope he wasn’t too disruptive. Our son got little acceptance out in the real world because he was different. By the time he was five he’d already received probably 1000 or more sessions of therapy for vision, speech, feeding, physically therapy and occupational therapy. He was well-loved in his small public school, but it wasn’t without a lot of challenges, daily calls from school and parental personal management. It was 2009 or so and we were in the middle of our son’s clinical and dangerous depression and we were in the process advocating for our daughter’s kidney transplant to keep her from going on dialysis. As parents we were maxed out on stress, work and keeping our kids alive and emotionally healthy.

I can’t tell you how important the church was to us as a family. Even our kids’ two kidney donors were members of our church! That little corner church was literally our sanctuary.

Imagine how our hearts were broken when our son was asked to leave a Sunday School class because he wouldn’t participate like other children and the teacher was afraid (of him or for him, we didn’t know). The leader of his class – a paid staff member – didn’t let him be him. She didn’t like or let him stay under the table until he came out. She didn’t trust he always came out but only when he knew you’d accept him and he was ready. We tried our hardest to tell her how to work with him but she just gave up. She wanted one of us to stay in class with him. I was already teaching the younger class and my husband enjoyed his Sunday School class. We said no and pulled him out all together. A short time later, I told that minister why all were leaving Sunday School. Apparently she spoke with the staff parish committee but we never heard from any of them. We didn’t know what to tell our son and we didn’t want him to think it was him, so we pulled our daughter out of class too (and I quit teaching her class, obviously) and told him that we didn’t like the way they were teaching the class that year. For the next several weeks we attended church but within a few months that dwindled to every so often, our attendance stopped at special events because we didn’t feel welcome with the director, who was involved in all the activities and then eventually we stopped going to our church altogether. My husband was especially bitter, I was hurt and overwhelmed with life with two sick kids, one of which would be suicidal in the next year, and one getting sicker and sicker, so I stayed away too.

Over the last seven years we’ve tried a number of churches (three? four?) trying them each at least for two to three months. Over that time my husband’s interest in trying churches stopped. After my mother died I started to loosely attend our former church with my father. That director long gone now, for me returning to “our” church was like coming home. Most of the same people, same feelings, same openness that always existed.

I’ve tried my hardest to get the rest of my family there. Our kids now teenagers have minds of their own. I’ve failed – we’ve passed those years when they are still somewhat flexible –  to get them back into the fold. I’m extremely sad about that. Sadder still, years later after it was revealed to a select few members why we originally left, they said they would have personally been our son’s helper had they known. They probably would have been successful since they were teachers.

As I sat in church Sunday without my immediate family, sadness came over me. I have regrets for not pushing harder for a place “at God’s table” for our son, no matter what his issues were. The fact of the matter is, we were so tired of fighting for the kids that our hearts weren’t in it to fight for this place; a place we should feel welcome no matter what. It’s exhausting fighting educationally, medically, mentally and socially and top that with the crippling cost of insurance and out-of-pockets to about $50k or more a year. We just couldn’t fight to stay in church. It shouldn’t have been, nor should it be that hard. As their parent, I take full responsibility for giving up that fight. I just couldn’t do it.

At the time, I reasoned my relationship with God would remain, as it had all my life when I was or wasn’t regularly attending church and it did. I reasoned if I could weather my relationship with God after the birth of my two children who faced life-threatening diseases, I could worship in my own way and I did.

My kids. I believe they would absolutely benefit from a spiritual relationship and connections to other adults and kids who attend that church, but I think we missed the window of time where that is possible. I’m not saying they won’t ever have a close relationship with God just that our odds are decreased. Currently one calls themselves an atheist and other says “I don’t understand it all.”

This is what happens when non-typical kids don’t fit in and room is not made for the possibility. It just gets to be too hard. Then the church loses the entire family.

———————–

20 Alternatives to saying “God wouldn’t give you more than you could handle.”