How do we respond when their theology is their child?

I regularly read the blog A Thinking Person's Guide to Autism, and this recent post is one of my favorites: My Baby Cried Louder Than Science. I know it might be controversial to share it here, as it is staunchly pro-vaccination and unapologetic in its dismissal of vaccine concerns. That's not why I love the post, though, and please know that I'm using this as a springboard to jump to another topic altogether.

In the post, Jennifer Byde Myers writes about taking her daughter - her second child, born after her older son's diagnosis of autism - for a well-baby check-up that included shots. She writes:

When she woke up at home I reached in to get her and she began to wail. "Poor thing, must be starving"... so I pulled her close and set about to nurse her... and she twisted her head this way and that, thrashed about and screamed. And screamed. And screamed. Every time I tried to comfort her, cradling her in my arm like she was a bouquet of flowers, she just screamed at me. She wouldn't eat. I panicked.
Oh my God. My child had her shots two hours ago, and now she is a different child. This is how it is, one minute the child is there, then they're gone; that's what I've heard. My daughter has autism. Oh my God.
In an instant, every single piece of science went out the window, and anecdote took hold. My science was my child,  my screaming child.

In case you don't pop over to the original post, here's the rest of the story: Jennifer called the doctor back, kept trying to calm her daughter, and finally took her baby girl back to the doctor in a panic ... where they realized that she had been causing the crying by putting pressure on one of the sore spots where the shot had been administered. The child was screaming because her momma was pinching her, not because she had a bad reaction to the shot itself. Jennifer was convinced that science supported the practice of vaccinating kids; she was willing, though, in a state of panic and helplessness to change that conviction.

I don't link to this to begin a scientific debate. Actually, I want to change the subject now, steering us away from science and toward theology instead. I've talked with enough parents of kids with special needs to know that this post could have been written about faith instead of vaccines. Instead of "my science was my child, my screaming child," I've heard variations of "my theology was my child, my hurting child."

Jennifer's doctor was compassionate. She didn't dismiss her concerns. She didn't mock her because she, as a mom, was misunderstanding her daughter's cues. She didn't look down on her. She listened. She watched. She helped.

Is the church willing to be just as gentle and compassionate and helpful? Are we willing to listen to the grief of hard theological questions instead of dismissing them? And are we willing to be patient with and available to parents who need support in their moments of panic and anxiety?

Disability raises questions. Hard questions. Sometimes, in an effort to avoid hard questions, we run from the families whose circumstances could force us to ask or answer them. Please, don't do that. Don't walk away from the questions or the individuals posing them. You'll miss out on so much if you do!

Whether or not you're personally comfortable with hard questions, know this: God is okay with them. He can handle them without intimidation or avoidance. He never runs from families with disabilities, even when others do.

Weekly round-up! {8/15/11}

I'm not sure if she reads this blog (because, unlike my other one, I don't include pictures of her grandbabies here!), but HAPPY (belated) BIRTHDAY to my beautiful mother. I hope you had a marvelous day yesterday! I let the blog have a sabbath day on Sundays, so I couldn't include the well wishes until today.

Will We Protect the Little Ones?: If you've read this blog before, you probably know that I admire the way that John Knight points to God's sovereignty in disability with both his life and his writings. This post from the Desiring God blog is no exception:
Prenatal tests are not the problem. The problem is the bias of our culture against the lives of little ones born with Down syndrome. Our culture does not think that these littles ones should be given the opportunity to live.
And there is no neutral ground on this issue: you are either doing something to protect the lives of unborn babies with disabilities or you are letting the culture pressure parents about what they "should do."
'Environment' Poses a Knotty Challenge in Autism: This news article from the NY Times is the best one I've read about the complexity in possible causes of autism spectrum disorders. (And it makes me thankful for the One who holds all the answers.)
Recent research has taught us more about the complexity of the genetics of autism, but the evidence also has suggested an important role for environmental exposures. It has become a very complicated picture: Genes matter, but we usually can’t tell how. Environmental exposures matter, but we usually don’t know which.
Teens, Tweens, and Transitions for the Student with Disabilities: This isn't a recent post - it's about seven months old - but it speaks to issues of age-appropriateness that I discussed in my Q&A last week. Plus it's written by a special needs ministry veteran and advocate I respect greatly, Jackie Mills-Fernald. In the article you'll find specific tips for inclusion and wonderful nuggets like this one:
Instead of saying we have no program for an individual with disability, why not ask, "What do we need to do to make a place for them in the body, so even those with disabilities have a church life like yours and mine?" Jimmy has a life like that; a life where he is able to impact those in the church, community and globally with the love of Christ, even with his diagnosis of Autism, because Jimmy has a church family that sees past his disability and sees his ability and potential as a child in Christ and Kingdom builder.
Eye Contact and Churches Including Children with Disabilities: This article, also from the International Network of Children's Ministry, is written by another passionate advocate for special needs ministry, Barbara Newman. She writes,
While speaking at a conference in Saint Louis, I met a pastor who just finished up a phone conversation with a family friend. He had been asked to fly to their community and lead the funeral service for their five-year-old child who had just died due to complications from several areas of disability. He had asked this family if their own local pastor would also be participating in the funeral service. The family admitted that they had no local church. They had tried eight churches within an hour driving distance from their home, and each one had said, "Sorry, we do not have anything for you here." The church down the road, however, had agreed to host the funeral service. I looked that pastor in the eye and said, "It is amazing that the first time this child's body will be welcome in church will be in a casket".
 Wow.

Now, as usual, here are some glimpses this week of the body of Christ rallying around families with special needs in a good way,

Fridays from the Families: Humans are human even at church

Donna Ross-Jones is a single mom to a teenage daughter and a younger son with autism, and she is a dynamic writer and advocate for those with special needs. Her post that I'm sharing today first appeared here on July 31, and Donna graciously agreed to let me reprint it.

I expected to feel safe (or at least safe for us) at a church. I expected people to be at their best and I assumed their best would look how I thought it should look. It didn't. At 9 he was too big for little kids church and we were not so welcome anymore. At 11 he started to be too big for kids church. People became less tolerant of his behaviors and they wanted him to move on to tween church, where they thought it would be a better fit. I don’t’ think they were considering what was best for Nick. They complained if he was late, they complained that he didn't seem to be involved in the lesson and enjoying “share” time and he didn't embrace “quite or meditation” time up to their expectation. I was told “Nick just doesn’t seem to fit here.” Gee, really? A kid with ASD isn’t sharing up to par or embracing prayer and meditation and your interpretation is "he doesn't fit." Ouch! I don’t want my kiddo where he is not wanted.

I tried tween church. I’d been introduced to the man who facilitated the program and he has a child with ASD. Maybe it is a better place, maybe the problem is protective mom holding on too long. I put Nicky in. He was quiet, he just sat and observed, he didn’t participate. He didn’t tantrum or disrupt the group with noise or run for the door. He just watched, I thought it was a good day.

As I walked to the car I was stopped by the program leader. He frankly said “I don’t think this is the program for Nicky. I don't think he fits in.” I was blown away. In short I asked why, and how could he say that after just one day? His answers were vague. I’m thinking been there, done that, but why here?

Seems humans are humans even at church, and rejection feels like rejection no matter where it happens.

Special needs ministry Q&A: Accommodations, distractions in worship services, choir, and youth trips

For the past two days I've been answering a list of questions posed to me in the comments section of one of my first policy-related posts. Today I'll finish with that list, but I would LOVE to answer any lingering questions you have, so feel free to pose some in the comments section or send me an email at shannon@theworksofgoddisplayed.com! To see the other Q&As from this week, go here and here.

Is it unfair to expect accommodation for an adult when there are no other adults requesting it?
No. If it's a needed accommodation - in other words, if the adult can't be included in your church without it - then it's unfair not to discuss it.

I say discuss instead of expect because if a church leader or a caregiver has a specific accommodation in mind that they expect, then the conversation begins with the accommodation rather than the need. It's prudent to begin those conversations with the need; in other words, why is an accommodation needed? Then - together - the church and the family can partner to figure out the best accommodation. God established the family, and God established the church; he is in favor of both, and we ought to operate in unity not opposition.

The model we see from Christ - for example, when he turns to the woman who has been bleeding as soon as she touches his robe - isn't to treat every person in the same exact way. Fair doesn't mean the same. And, more important, treating all people in exactly the same way regardless of their needs isn't following the model Christ provided for us.

what if the person vocalizes loudly during a church service or is distracting by their movements or other appearances? should they be required to go to the 'baby room', 'tv room'?
This is a hard one to answer without knowing what "vocalizing loudly" and "distracting by their movements or other appearances" means. In some instances, the distraction is problematic, and in some instances, the problem is that people get hot and bothered over minor distractions and just need to get over their own mentality of comfort. Is the vocalizing during music as the person's own special way of making a joyful noise unto the Lord? Or is the person shouting during the sermon so that the pastor cannot be heard?

I don't like the word required here. Any decision about removing someone from a typical setting - even when an alternate one is being provided, like a baby room or cry room or other room in which the service is being broadcast to screens or TVs - should be a discussion between the church leaders and the family, not an edict from the powers that be in the church. I do think it's a wise idea to offer an alternate setting, not for the sake of providing the church with a place to hide those families but for the sake of offering options to the families, some of whom feel uncomfortable staying in church with even the most minor vocalizations.

Another key point to consider here is how friendly your church is to kids. Some churches establish so many programs for kids during the service that is becomes clear that the church leaders expect kids to be in those programs instead of in the sanctuary/worship center with their parents. In our family, we bring our four-year-old daughter to "big church" with us, and then she goes to Sunday school after the service we attend (and during our second service) while we coordinate Access Ministry. I've found that churches where children are included in worship services are more likely to be churches where people with special needs are embraced too, because perceived distractions can come with both groups. (I say perceived distractions because - like beauty - distractions are often in the eye of the beholder. Sometimes the distraction is a problem, and sometimes the perception of the beholder is the real problem.)

should people who have difficulty articulating, carry a tune, and/or are non-verbal be allowed to join the choir?
I say yes, but this is a conversation you should have with whoever leads the choir at your church. Special needs ministry advocates should never be antagonists; we don't push our ministry perspective at the expense of others. Inclusion doesn't just mean including people with special needs at your church; it means including all ministries in your church in those inclusion efforts.

Here's an idea from our church: We have a team of vocalists that is audition-only to lead some of our services; if we have a solo, then it's usually someone from that team. We also have a choir, which is open to anyone. Someone who has difficulty articulating, carrying a tune, or expressing himself verbally could participate in the choir.

should youth w/special needs be allowed to participate in youth trips? what about liability & extra assistance/supervision?
Just as I recommend above that a decision should be made about the choir with the choir director and not unilaterally from the special needs ministry coordinator, here a decision should be made with the youth pastor/director and the parents. What is the purpose of the trip? How could the youth with special needs be included safely? What barriers exist to full participation? How can those be overcome? Do the parents even want their child to participate? I can't offer a yes or no here, but I can tell you that it's a conversation worth having and that anytime a "no" is given for something like this, we ought to offer a "yes" in another area (i.e. "on the high school ski trip all the kids are out on the slopes for most of the time, so your child who is unable to ski would probably feel excluded and might not have the supervision necessary, but here is a place we would love to include him...").

At our church, we have youth with special needs at our week-long summer camp (which is an overnight camp in a neighboring state), and we have kids with special needs on our middle school tubing trip and our high school ski trip. We have youth with special needs on mission trips. Disability isn't an excluding criteria, though some adaptations and extra supports are sometimes necessary.

Yes, liability usually increases when you include people with special needs, but as I wrote yesterday, liability issues arise whenever anyone shows up at your church. Extra assistance/supervision may be necessary to limit liability and increase safety. And much communication will be necessary to make sure all parties - leaders, the youth in question, the parents, other kids, and so on - are partners in inclusion.

~+~
This wraps up my Q&A for the week, and tomorrow I'll have a guest post from a parent. Please feel free to leave a comment anytime with other questions, and I'll do my best to answer them! And, as usual, if you have a different answer than what I've given above, chime in with that too so we can all benefit from your perspective.

I hope you're having a great Thursday!