Monthly Archives: August 2016

Turned Away

at church
One of only two pictures I have of Will in a church

We can’t find a church. Our problem is NOT usual. Statistics show that church membership is down and fewer and fewer Americans are attending church. Churches have resorted to mailers, advertisements on media, varied service times to attract busy families, and recreational and small groups—anything to make the church look more appealing. I actually find it disheartening that we have to “sell” church, but nonetheless, this has become the new norm.

Now that said, I do acknowledge that some folks can’t find a church because they can’t accept one that is not a philosophical match or they make excuses about why they can’t attend (time is the number one reason).

This is NOT our issue.

We can’t find one because we can’t find one that will accept both us AND our intellectually and physically disabled child.

Ironically when I consulted both my own personal Bible and the Internet, I could find no references to a church turning away someone, only references to someone turning away from God.

So, what happens if a church has turned you away, in fact, turned you away before you have ever even darkened its doors? It’s happened to us, three times. Even in the tradition of Judaism, if you knock three times you will be accepted.

NOT us.

My husband and I are Christians, life long Methodists. However, we are open to any denomination —so long as they are inclusive to all marginalized individuals and we have the opportunity to engage in a Christian community and be part of that ever- important corporal prayer. We do a lot of personal Bible reading and prayer. You have to when you have a kid and a life like ours.

Because if you didn’t have faith and purpose, you’d curl up in a ball and die.

There is very little literature and even fewer studies (too few) about parents of children with disabilities or individuals with disabilities and church attendance or inclusivity.

Out of the University of Kentucky and Vanderbilt, author Eric Carter (2013), in his study titled “Supporting Inclusion and Flourishing in the Religious and Spiritual Lives of People with Intellectual and Developmental Disabilities,” He explains that out of the 416 parents surveyed, only 43% felt that the religious community was supportive, a third had changed their church because the church had not welcomed their child, and more than half didn’t even have their child participate or attend the church at all because the church wasn’t supportive or welcoming.

Doesn’t the Bible say we are all one in Jesus Christ? It doesn’t feel like that to us and to many families of children with disabilities.

The first church we attended with Will had a very welcoming Pastor family. They were very supportive and had worked with other families like ours. But the church is more than a Pastor, it is also its people. And the people, well, they were NOT interested in Will participating in children’s church or Sunday school and Will’s cries during church were “tolerated” with many unfriendly looks.

The second church seemed ideal as they actually had one of the few disability ministries around (note that I live in the 13th largest city in the country), yet the church itself was not welcoming to women preaching, to individuals who identified as LGBTQ, and it was large with a Joel Olsteen kind of cult feel. My husband and I are intellectuals, we like and can handle real preaching, not a sermon of clichés, smoke (literally smoke during every song), and outreach that fell way short of actually working with the marginalized individuals in the community. And Will was being babysat, not engaged.

I reached out and called the third church and was assured that they wanted us and would help us. We were encouraged to attend and try it out. We set a date. We were told we would be welcomed by the Associate Pastor after the service. We came. No one noticed us (How do you not notice a large and sometimes loud child in a green wheelchair wearing shooter style blue headphones to keep noise cancelled?). No one greeted us. No one came to talk with us after even though we waited in the designated spot until most of the church had left. And no on ever followed up with a phone call even though I completed the visitor registry explaining we were new and requesting more information.

I reached out to the fourth church, a newer Methodist church in the area, and left a detailed email AND phone call with the minister explaining our situation and how we had been turned away and to please only call us if he could help us find a way to attend church WITH our son. We didn’t want to once again attend and be met with false hope. No return call and no return email.

Turned away. Again.

So, we remain churchless. We have been churchless most of Will’s 13 years. I don’t worry about his soul. The Bible assures us that those who can’t ask for salvation, but are pure in heart will be accepted. And I have always described Will as part angel/part boy as he has lived in both worlds.

He was born dead and came back to life and came close to death again two other times on a surgery table. He often looks over and past us and makes eye contact with and verbalizes noises. I am confident that he is surrounded by angels, and the he communicates with them. He is really not fully of this world because he was born into a different one.

But I miss a church family.   I miss the feeling of corporal prayer, of an entire church lifting up and speaking together. I miss the simple things too like food and fellowship. I miss being able to talk with a Pastor or an Elder or a Deacon when times get tough, and I need some perspective and I can’t find the message I need on my own in a Bible. I miss the church.

As I write this, I am crying. And I don’t cry easily. I know my God feels my pain, and I know he has a plan. I will never lose faith in him and his son as I would never lose faith in my own, but I am beginning to lose my faith in the church and its people.

I know what Jesus would do. I love Jesus because he sat, listened, cried, prayed, and healed everyone he encountered. He remains my example. Jesus is my model for my own social activism and desire for social justice. He was with those who were poor in spirit, who mourned, who were weakened, who where hungry, who sought righteousness, who were rich, who were sinners, who were merciful, who were peacemakers, and who were persecuted.

My favorite Bible verse is from First Timothy 6:12, “Fight the good fight of the faith. Take hold of the eternal life to which you were called when you made the good confession before many witnesses.” I will. My husband will. We will continue to fight the good fight for Will and for the opportunity to someday, be included and part of a church family. And one that loves us unconditionally.

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Dear Neighbor, (of a family of a child with special needs)

will 13Dear Neighbor,

I know your life with your children revolves around school, sports, dance, music, and social schedules. I live next door. I see that you are very busy taxing your children to and from their many activities. I notice that the families you lean over the fence or at the pool or park to talk to are families of children like yours, not mine. Our houses are 20 feet apart. Yet, you never lean over your fence to talk to me. I’m the only family like mine in the neighborhood, so I have no fence to lean over.

I know that you don’t understand what goes on inside or outside of my house. You see the cars parked in front of our house and nurses in scrubs who come in and out every day. You wait patiently twice a day, but I know are annoyed by the bus that has its STOP sign out for 10 minutes as it takes a long time to load and unload my son for school. You sometimes even wave as you race by to make up for time lost that you were stuck waiting either in your driveway or on the street.

You work and think because I am often home, I don’t. I do. I have arranged my work so I can be at home most of the time. But, understand that means that I am often caring for my son much of the day, taking him to doctor’s and therapy appointments or attending meetings at school and then working until midnight or beyond to complete my required work.

Or you don’t work and you don’t understand how with a child like mine, I am not a stay at home mom. What you don’t understand is that I like working, I need an outlet besides the 24 hour care and worry of keeping my child alive, that I have to work to pay for the medical expenses, and that if I don’t work, it’s very difficult under our current system to get home health care.

Besides never speaking to me, your children also don’t speak to my child. They wait for the bus on the corner where the bus picks them up while my child sits alone in his wheelchair 10 feet away from yours waiting with his nurse for the bus. He would love it if you stopped to say hello as you walk past him (you often walk onto the street to avoid any contact with him at all). What he has isn’t catching. Don’t worry.

Just because my son is intellectually disabled, he’s social. He loves people and he knows when he’s being ignored. He watches your children play outside through the window and he doesn’t understand why he can’t roll over there and join in.

Once last year, after living next door to us for a year, a year after I brought you brownies and welcomed you to the neighborhood on the day you were moving in, you walked over as I was unloading groceries and asked if we were having trouble with our cable. Yes, I said. I called the company and they came to fix it. Oh, you said, I guess I’ll have to do that too. Hey, you said, we just got a new puppy. Yes, I said, I saw him; he’s cute. Would your son want to pet him? No, I said. He’s allergic and a little scared of dogs. Thanks for asking though.   Okay, well we will get on that cable company, you said and walked away.

As you walked away, I wanted to say, but hey, maybe your son who looks like he is close to my son’s age would want to come over and watch football with my son. Does your son love football? Will does. Hey, I see your boys play baseball. If it’s not too hot out, Will loves to go to games. Maybe he could come watch your sons play? Or, I notice your girls are very young. Will loves to play with younger toys. Would they want to come over and play toys with him?

But, I didn’t.

I’ve lived in the same house for 11 years with my son and only a few of the neighbors inquire about Will or us. Most just wave or give us looks of pity as they simply see us as the family who has a kid in a wheelchair who makes noises that they see out sometimes.

I guess they don’t understand because 1) they have never known a family like ours or 2) they don’t want to bother to know or understand a family like ours.

If you want to understand, here are some ideas:

  • Knock on the door. Introduce yourself. Ask about my kid. Typical stuff, his age, where he goes to school, what he likes to do, what he can and can’t do. Tell me your kid’s info. Let’s see if we can find an intersection. I’m sure we can. Our kids are more alike than you think.
  • Say, “If there is anything we can ever do, let us know.” And mean it. And I’ll do the same. I’m home more. I could help get your kids off the bus. Could you help my nurse out if she is struggling to get Will in the house in his wheelchair and I’m not home? Our needs are more alike than you think.
  • Ask if Will wants to come over. He may not be able to get into your house, but he could take a walk with your kids or with you. I see you walk every day. He could hang in the backyard. He can even toss a ball around. Our kids are more alike than you think.
  • Tell me about what a pain it is to get your kids to all these activities and work. Gossip with me about families you know. I’ll tell you what a pain it is for us to arrange all of Will’s appointments and keep his schedule. And I have gossip too. We have more in common than you think. Our complaints are more alike than you think.
  • know it’s not easy to get Will into your house, but you can come over to ours. I’ll grill and you bring a side and the kids can play. You are a teacher. I used to be a teacher. Our interests are more alike than you think.
  • Tell me more about what makes you happy about being a mom. Just because my kiddo is sicker and is clearly disabled, doesn’t mean I’m not happy. I love Will, and I love being his mom. Our joys are more alike than you think.

It’s easier than you think to be neighbors with a family like ours. Like our son, we too just want to be included.

Sign,

Your neighbor