Monday, September 12, 2011

autism and faith

Editor's note: without realizing it i accidentally posted my draft so it's quite possible that some of what you are about to read you've read before. however, it was a draft and has been edited ~ so it is different ~ i promise! thanks.

after my last few posts, a seminary buddy sent me a message through facebook asking me about leading worship when there were children with autism in the congregation. i told her i would give it some thought and maybe blog about it then share it with her. chances are this is going to be an on-going kind of blogable topic and here's why: i believe that worship is a public event. it's something we do in a community outside of our private spaces; taking a child with autism into any public space in order to participate in a public event is incredibly difficult. the number of issues that you can encounter and risks that you face in performing such an activity are exponential.

if you are a parent remember what it was like to take an infant or toddler out into public. now triple all the preparations you made, add all the extras you would take along (diaper bag, snacks, bottles/sippy cups, extra clothes, toys, etc), then change the weight of your child to aproximately 60-70 pounds, make your child mobile, fast, 50 times stronger, and completely unpredictable. oh, and don't forget to factor in at least an hours worth of time for any unforseen melt-down, potty accident, just played-in-the-dirt-in-my-easter-sunday-best-now-i-need-new-clothes-on possiblity and that's what it's like to take my child out for a dinner at mcdonalds or to church on a sunday morning.

the question my friend asked about making worship more welcoming to children and their families is really a question that can be asked of any organization or business where public events take place. as the autism spectrum rate continues to grow i encounter more and more people working in service-type-jobs who get it. i'm always relieved when our waiter or waitress let's us know that s/he is closely connected to a child with autism when taking our drink orders. it means that they know we are going to need extra napkins and hot plates of food to be put on the table quickly and out of the prince's reach. and as a side note, we are almost always prepared to tip well because we know that we are going to need extra attention and that we will be leaving a mess when we are done our meal.

i know many parents who struggle with taking their typical child/ren to church and perhaps it's the same for parents in other religions. i get that it's not easy and there are many congregations out there that claim that they welcome children into worship, but really don't have any clue how to actually do that or worse they say that they welcome children but actually do the exact opposite of welcoming in the way that they treat children and their care-givers. i get that for many families sunday is the only day left in the week to sleep in (personally i see that as a cop-out, but that's just me.) i also know that i'm really blessed by being a part of a congregation that does welcome children and loves my kids. i know this by the way they interact with both the prince and the princess.

it's that interaction that makes the difference. so what is it that they do and what can other congregations do in order to welcome autistic children and their families?

let me start by giving you some background.

first off, worship stuff is one of my (trying to say this without sounding cocky) gifts. i've written worship materials that have been used in lutheran congregations all over north america and most recently wrote materials for (the organization begun by bono of U2 to end poverty). i'm not necessarily a big-shot or a household name in the liturgical field, but i do believe i can claim some expertize in the area. worship is a big deal to me and i could write volumes on my philosophies on how it should be done. to be a bit more brief, i believe worship is primarily something we do for God, but to make it autentic and real it should also be done in the voice of the people doing it.

sometimes we need to be taken outside of our comfort-zones, especially in our faith lives, but having an identity and knowing who and what we are needs to inform us when it comes to gathering as a community and acting out our purpose. if our purpose is worship then to make it autentic we need to be who and what we are when doing it. for example; a primarily spanish-speaking congregation is going to have difficulty if their worship rite is in german even if that is the tradition of the denomination. to be authentic they're going to sing spanish hymns and incorporate spanish traditions.

one of my pet peeves (and something i've certainly been guilty of) is when congregations try to be something that they are not ~what i have been guilty of in the past has been trying to make congregations be something that they are not. i'd like to think that maybe i've learned to first try and figure out who the congregation is then help them be that... but i digress.

the congregation that hubby is a pastor of has a lot of gifts; they have also had experience dealing with kids with autism before.

when i was still working as a pastor in a church i discovered that it was necessary to hire a sitter to bring the silent prince to church and sit with him on sunday mornings. my amazing church secretary had a daughter who was at the exact right age to babysit and she soon became our go-to sitter. the parsonage (the church-owned home that we lived in) was right next door to the church i served and she would meet us at church before worship and take care of the prince at church or at the house until hubby or i got home. it was a great arrangement and while taking care of my kids she decided that what she really wanted to do with her life was to work in the early childhood development field.

when i went on disability and began worshipping with the hubby's congregation i found myself frustrated by the fact that worship was still a great deal of work. i would look around at other parents in the congregation as they held their kids or handed them some cherrieos as they quietly colored in the children's bulletin and then jump out of my seat to chase the prince down the center aisle as he flung his arms around and made loud happy sounds during the sermon or the prayers.

sunday mornings were not meditative or rejuvinating and no matter what my therapist said it wasn't enough that i had brought him to church to expose him to the people and the people to him.

now lots of christians will say that sunday is their sabbath. i don't tend to agree. the sabbath takes place between friday at sundown to saturday at sundown. sunday is resurrection day and a completely different concept from the sabbath day. sundays are supposed to be a day when we act out what the resurrection means for the world. it is a day of labor - good labor where we act out our faith because we have been promised resurrection and new life.

some people in the congregation noticed that having the prince in church was not an easy task and they began to ask questions. those questions led a group of people to take care of the prince when i was supplying in different congregations. it was a wonderful set-up and took some of the stress off of hubby when i wasn't there. however, i still felt overwhelmed and frustrated on those days when i was his primary care-giver during the service.

parents of children with autism can have a hard time asking for help. maybe it's because we know that the kind of help we need can be burdensome. when we go to a family event it's hard to enjoy being with others because we need watch the prince and asking uncles, aunts, or cousins to watch him for a bit seems unfair; they are there to have fun too and watching the prince is incredibly hard work. the same is true when going to church. i know that the people there want to be active participants in worship. they want to sing the hymns and listen to the sermon. they want to be filled and fed with all the good things that worship can give us so that they can go out into the world and do those things that christ has called them to do.

it was one thing to ask volunteers to help with the prince when i wasn' there; it was another to ask volunteers to take him when i was there. - at least, that's how i felt -

finally i made the decision to ask our sitter if she would work for us on sunday mornings again. it made all the difference when i knew that someone else was there to be responsible for him so that i could listen to the sermon and participate in worship the way others did. and after worship i actually got to have coffee during coffee hour and have conversations with people. autism can keep family members from times of fellowship, something that i believe is part of worship. "go in peace, serve the lord." isn't a conclusion to worship, but a piece of it. fellowship- spending time with members of our church families is still a piece of how we worship God.

when our sitter made the move to another state we searched for another sitter who has been with us for several months now. she's been a blessing, but last week she informed me that she would have to give up babysitting for us at the end of the year so she could have more time to focus on school. figuring out what to do next is scary and frustrating. it will take months to find someone else and the process is more about luck than anything else. i've started praying; the first step in a process like this.

so now the question again: how can congregations be welcoming to families with autism?

more to come...

God's peace y'all,

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