Saturday, September 24, 2011


well, this is embarrassing. i accidentally published my draft then was certain that i had gotten it to revert back from a published post to a draft. i then promptly forgot about it because i expected that i would get back to writing the draft - no worries.

except that my draft didn't go back to being a draft; it stayed a post without me knowing.

so if you read the post on autism and faith please forget it - that way it will be new the next time you read it.

God's peace y'all

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,

Wednesday, September 07, 2011

amusement, orange wristbands, and generosity

for her last birthday the princess kitty asked her fantastic uncle (because calling him her "great-uncle" makes him sound old) for tickets to lake compounce. we went last year when someone else had given us tickets as a gift. we had such a wonderful time and the best part was how much fun the silent prince had while we were there. the princess kitty, always thinking of her younger brother, wanted a gift that she could share with him so last saturday we put on our bathing suits, packed some bags, and made our way to the water/amusement park.

it started off great. the silent prince and his big sister had a blast in the water park. hubby and i were having a great time too despite the fact that the water was freezing. the princess kitty and i decided that we should take her brother up one of the water slides specifically for little kids. she and i both agreed that she should go down the slide with him, but when we finally made it to the top of the slide the attendant told us that only one child could go at a time (and i was too tall to ride) and that a lifeguard would be at the bottom of the slide.

the princess kitty went first and i put the silent prince into position. he's gone down slides before and he had just been on some of the other water slides. water gushes out of the top of the slide to help propel bodies down the slide. i gave the prince a "ready, set, go" and then a little push. he started off in the gush of water, went about 7 or 8 feet past the gush to the point right before the first real drop on the slide and stopped then stood up.

i yelled to him. i called his name. i ordered him to SIT DOWN. he just stood there enjoying the view.

if my first mistake was taking him up the slide in the fist place then my second mistake was not just going out onto the slide to get him instead of asking the attendant if i could just go get him.

i don't know how long he stood there as i kept insisting that i would go get him. at the bottom of the slide hubby was trying to convince the attendant at the bottom to let him into the kiddie-only pool at the bottom of the slides. the princess kitty, already upset that the attendant wouldn't let her ride the slide down with her brother, started to panic.

the attendant told me a lifeguard was coming to get him. i told her once again that i thought i should just go out and get him. i was at the point of saying "to hell with you, i'm going" when the lifeguard finally made his way up the slide and walked the prince back up the slide to me.

at the bottom of the slide i comforted the princess kitty who was now in tears and hubby and i agreed that it would have saved all of us a great deal of grief if i had just gone out and gotten him.

since it was still the beginning of our visit a quick recovery was needed. hubby took the prince for a walk and i took the princess for a raft ride that ended in an awesome waster slide. it made all the difference for the both of us.

no, that isn't us going down the slide

after a late - and very expensive lunch - we headed towards the amusement park rides. last year the prince loved one particular ride - the rainbow rider- so we made that our first destination. when we had been on the ride before i was able to get one of the best pictures ever of the two kids.

because it was labor day weekend and a saturday there were lines for every ride, including the rainbow rider. i held our spot while hubby walked the prince around. when we got to the front of the line there was one "teacup" left for the ride, but the attendant closed the gate before we could get through. she explained that she had to let two other girls jump ahead of us because they had a special wrist band.

as the two sisters walked past us i immediately knew that the younger girl was autistic.

hubby continued walking the prince and the mom, attendant and i quickly struck up a conversation about the bright orange wristband. the the younger daughter was indeed autistic and had difficulty waiting in lines. if i went to guest relations they would give the silent prince one too which would allow us to go to the front of every line and ride the same ride twice in a row if we wanted. i then told her about how he had stood up in the middle of the water slide.

"that was your son? you know, when i saw him i said to my daughter, 'i bet he's autistic.'"

at guest relations the dad in line in front of us struck up a conversation with us about getting the wristbands. apparently the park trains their staff on interacting with families of children with autism. we had a nice chat and both our sons said hello to each other. when it was his turn to go to the window he let us skip ahead of him, i think it was probably obvious to him that the prince was completely done with waiting.

i now know that lake compounce partners with autism speaks every year and even has an autism awareness day each year. this is something i'm going to remember for next june.

the wristband made all the difference. honestly, i felt like a vip being able to go to the front of every line. of course the silent prince only tolerated the wristband for about 5 minutes before insisting on getting it off of his wrist at which point i simply tied it onto a hair-tie that i wore around my wrist.

it was such a great day that we stayed until the park closed, something hubby and i had been adamant about not doing.

the princess kitty saved the summer for me- for all of us. back in may, when she pondered what she would ask for from her fantastic uncle she wanted something that we could use as a whole family. talk about perspective! (see my previous post) being able to include her brother in things we do makes her happy. finding a place where we can actually do that is a challenge. but all of us left the park that day feeling positive, happy, and content.

i had expected and prepared for a high-stress day. i expected that i would be a miserable mess on the ride home. i was certain that i would go to bed that night bemoaning the fact that family outings are near impossible for our household. instead my whole perspective on the summer was set right again.

it is all thanks to the generosity of my daughter and her fantastic uncle.

peace y'all

Monday, September 05, 2011

damn those starving children in africa

if you were a child who didn't like eating their vegetables you probably heard this at one point in time, "finish your dinner; there are starving children in africa." i can't really remember having heard my parents pull that one on me, not because i always ate all my dinner, but because they weren't really the type of parents to guilt us kids into getting things done - at least not that overtly. it could also be that on some occassion my brother or i was smart enough to respond with the ultimate retort to that statement: "so why don't we send them the rest of my dinner?"

i've been complaining way too much which was not what my intention was in restarting this blog. part of me wants to feel guilty. how could i possibly complain about a hurricane cutting my vacation short when people have died from it or lost their homes? i should be more positive; i should consider all the good things that have happened; i should focus on all my blessings afterall there are starving children in africa.

sometimes perspective helps. take for instance waiting in line at the walmart. there was one customer between the customer at the register and me when there was a price check. when that transaction was finally completed the cashier apologized profusely for the wait (which had only taken  about 2 minutes). the woman ahead of me assured the cashier that all was well and i agreed. there are far bigger issues to worry about than an extra 2 minute wait in a place where one expects to wait... afterall, there are starving children in africa.

and the sad part was how suprised and apreciative the cashier was that we had that perspective. according to him most people would have been in a screaming fit by the time they reached the register.

sometimes perspective doesn't help at all. yes, there are starving children in africa, but in the right now life is unbearable. for example, at about the same time hurricane katrina hit we were all displaced from our home because the silent prince had almost died from lead posioning. the 4 of us were living in a 2 bedroom apartment with the dog and 2 cats. it was a crappy apartment, we had no cable, internet, or cell service- therefore no entertainment- and we couldn't go back home until the house was completely abated. ok, not the superdome, but it was horrible and sent me into a deep and dreadful depression that lasted for years and left me on long-term disability. perspective - what perspective?

i'm reminded of a quote someone once shared with me: "People who think of others first will have great troubles, but they will seem to them small. People who think of themselves first will have small troubles, but they will seem to them great."

everyone loses perspective occasionally; people are, by nature, selfish creatures. what makes the difference, at least in my opinion, is to try to be the kind of  person who thinks of others first and to give yourself a break on those occasions when you do lose perspective.

and sometimes perspective doesn't really matter. there are times when it's completely and totally ok to wallow in your own misery, to bitch and complain, weep and wail, and say to hell with those starving children in africa. the trick is not to live life in that place, but to live in a place where you remember that you don't hold the patent on pain. living in that place takes practice and intentional giving.

intentional giving is simple generosity: give to a cause on a regular basis; practice simple acts of kindness; be nice to cashiers and make it a habit.

i admit that i am a selfish being, but being a habitual giver is the thing that always puts my life back into perspective when i've been complaining too much, wallowing too much, weeping and wailing too much. it doesn't dismiss my pain or make it meaningless. it doesn't inflict guilt upon me because i focused on myself instead of others when i was hurting deeply. it allows me to hurt and then helps me to heal.

it gives me back a knowledge of my blessings and helps me believe that i am indeed blessed.

God's peace y'all and many many blessings!


"and vivian followed."

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