Autism and Church Part II

Saturday night we told the boys we'd be attending the 10:30 service the next day.  Everyone was on board.  We were careful to explain to Daniel that he would not be hanging out in the Youth Parlor, we'd be in the sanctuary.  On these first trips anywhere you have to be so very careful.  Whatever you do, he will want to do each and every time.  If we had allowed him to play pinball, by gosh he'd be doing that every single time.  It is nearly impossible to change.  That is one reason why we waited until this day to go.  They have had some other special weeks of Youth Sunday etc. but it hasn't been the "standard" service.  We wanted his first church experience to be what it would look like MOST of the time. 

All went well most of the morning.  When we got to the church and the parking lot was full the anxiety set in for him.  I could see him start to stress.  He got rigid and irritated.  Todd dropped us off and set off in search of a parking spot.  This also caused him great stress.  But we have determined through other experiences it is better than Daniel driving around and looking.  We waited on a bench outside while Daniel perseverated about when dad would come and where he was.  I was on high alert because of Daniel's stress level.  He just didn't know what was coming and frankly, neither did I.  We sat on the bench on the mild November day while people continued to walk into the church.  With every opening of the door he got more stressed waiting for Todd and listening to the very loud screech of the door.  Daniel commented that it "definitely needed oil".  I agreed but was continuing to put on my happy face while Zachary paced off to the side. I could see how upset Zach was getting.   I'm sure he was thinking what a terrible idea this was and he was preparing himself for embarrassment and disaster.  I have to say.  So was I.

When we finally saw Todd striding across the parking lot toward us I think we all let out the breath we were holding.  We looked at where Zachary would be going for Sunday school and sent him off.  That was one thing I was relieved about.  If Daniel did scream and break down, Zachary would be far away in the Youth Parlor for Sunday School and wouldn't have to witness it. 

We entered the sanctuary and positioned ourselves near the back at the end.  Ready for a quick exit to the Friendship Hall if necessary.  We were given programs which we started to look thorough.  The program!!!  What a wonderful thing!  For those of you with kids on the autism spectrum the program is essentially a visual schedule!!!  It showed all of the things that would happen, in order.  Something for us to point out where we are in the schedule thus helping him determine what is left to get through.  This was good.  This was very good.

Then a woman took a seat in front of us with an adorable little girl.  Probably 1 1/2 or 2 years old.  Todd and I looked at each other, with Daniel in the middle of us.  We both immediately knew what the other was thinking.  "This will never work".  He would be watching that little girl wiggle and want to leave and the mom would be doing  whatever would need to be done to keep her there, which is fine,  but that won't work for Daniel to see the whole time. He would be very irritated and would only focus on her.  The next thing we simultaneously thought was "how do we get him to move?" Because once he has a spot.  He doesn't move without a fight.  I said, "Hey let's go say hi to Mrs. Spicer, I saw her come in!"  He loves her and was willing to get up and do this.  Then I threw in, then we'll sit in a different spot.  We said our hello's and moved to the other side of the back, hoping another mom wouldn't have the same big idea to be close for a quick exit like the rest of us.  This also gave us a view of the bell choir and we used that as our excuse to move, "Look, now we can see them play the bells!"  He seemed suspicious, but went along with it.  I love those parenting moments when Todd and I are on the exact same page and with a look and not a word, go into the same mode!

Soon after the bells started playing and I could see his body relax.  The music would be the saving grace.   The church has a new pastor whom I have heard a lot about. He is young, he is kind of cool and I've heard nothing but fabulous things about him.  As soon as he spoke, I watched a smile form on Daniel's face.  He was everything I'd heard about and more.  He is engaging, funny and makes you feel like he is talking to you.  My confidence was building. 

We heard from the Book of Ruth and of Gleaning.  I was enjoying the stories.  He relates them so well to his life and ours.  And as Daniel would start to get antsy the choir would sing, or we would have a hymn to sing and he would stand and sing along with the words in his sweet clear singing voice and it would break up the mood.   I was really starting to feel confident.

I desperately wanted to know what time it was.  I finally asked Daniel, who always has his watch on,  and he said 11:05.  Darn, just over half done.  I knew it was a risk to ask, because it could set him off if it was too long before it was over, but my curiousity was getting the best of me.  Then what happened next, was not what I was expecting.  Daniel was sitting there quietly and a huge smile came over his face.  Then it started.  The giggles.  He had the giggles.  Big time.  He was trying SO hard.  Covering his mouth, trying to be quiet.  As it goes with the giggles, they are contagious.  I couldn't help it either.  I looked at Todd and we both were smiling and giggling ourselves.  It eventually subsided.  I don't remember what it was that broke it. Probably because I love when he gets the giggles.  It is infectious and it makes me happy to see him happy. 

At one point I heard Pastor Andrew talk about a discussion he had with some people of the church.  I must have missed the beginning of this and been watching Daniel, but I snapped to attention when he mentioned that a person on a committee was talking about the expense of installing a handicapped door and if the large amount of money should be spent on it.  The discussion was saying that they don't really have anyone at the church who needs that (as a man was at the end of our row in a wheelchair?).  I am a bit confused on what Pastor Andrew said in relation to this and I'm sure someone else who was there can clear it up for me, but my mind immediately shifted to a story I heard once at a training.  I still don't know if this story happened or if it was metaphorical, but it stuck with me and applied so perfectly to this discussion that I missed part of it.  It was this:

on a very wintery day when the children arrived to school the paths were still not cleared for the kids.  The custodian was working feverishly to get it cleared and safe for the kids.  Shoveling and salting and laboring, sweating under the pressure that the kids were arriving.  The children wanted to get into the building on this very chilly day and were asking when he would be finished with his work.  The custodian was working and working to clear the steps to the school when a girl in a wheelchair asked if he would clear the ramp first.  The custodian said no, if I clear these steps more of the kids can enter this way, you will have to wait since there is just one of you.  To which the little girl replied, "but if you clear the ramp first, we can ALL enter that way". 

I love that story.  People often wonder why you accommodate for that for one person.  The lesson obviously being that if you make it accessible for that one, you are actually clearing the way for everyone.  If you have a door that not only one can enter through, but all can enter through, you make your church open to everyone.  Maybe you don't have as many people at the church who need it, but maybe they don't feel like it is handicapped accessible enough?  Maybe people are being left home and excluded because of it. 

This story always affects me so much.  Autism, while not the same as being in a wheelchair and physically excluded from a place, is a very isolating thing.  My mind went back to 1st grade and I was waiting at the school to go on a field trip with Daniel.  There was a large group of moms waiting to do the same.  They of course all knew each other and everyone was asking this and that.  It struck me at that time that I didn't know one parent there.  I had missed on all the play dates, the phone calls, the chatting at the park and at the school.  I was just working to get my child TO the school every day.  You don't get invited to as many places, if anywhere at all.  You don't fit in.  It is lonely. 

Because of this, I know when families are excluded from their church too,  is very difficult. For the families who attended church and were asked to leave that is a terrible thing.  Then there are some of us who just don't put themselves out there and avoid being excluded as a self protection.   It seems it should be the place that welcomes you with open arms, no matter WHAT.  It is a community.  A safe haven.  And with that I heard Pastor Andrew say something about the church being a place "inviting all people".  That is how it ended.  On the first day that we were there. They ended talking about inclusion.  We said the Lord's Prayer which was written in the program and Daniel read along with everyone else, something I learned on those Sundays at the Catholic church and recite every day to myself and we sang another hymn.  Then it was over. One hour, successfully completed.  Our first day in church.  I didn't get a chance to talk to Todd about it after.  He was leaving town and we went into that mode.  But I felt so happy and content all day that we had accomplished that.  That Daniel had enjoyed it.  That the message was about inclusion in the end. 

Autism and Church

This fall our family resumed a discussion that we have had on and off for years.  The discussion was about church.  Zachary, my youngest came to the age when he could start attending the middle school Youth Group that happens to be run by a good friend of mine.  She does amazing things with her teens and they get to experience things they wouldn't get to anywhere else.  Zachary happily became involved and quickly fell in love with his Wednesday Youth Group. 


Church is not something we have ever done as a family.  Todd did with his family as a child, but my memories of church only revolved around going with which ever families house I had slept over at the Saturday night before. I spent a lot of time in the Catholic church but only because my best friend was Catholic!   Church was not a part of my immediate family.  This set me apart from a lot of other people growing up in a city that is literally referred to as the city "with a church on every corner".  Church, after all, is supposed to give a sense of community and belonging, among other things.  At least I think so. 


Over the years, discussion of bringing our boys to church would surface we would have a short discussion then it would quickly dissipate.  There were so many questions of not only how Daniel would react and if he could sit through a service but would he be accepted.  I can't tell you how many families I have come across that were not welcome in their church because the congregation could not accept the differences of their child. The fact that they couldn't sit still or blurted out, or whatever happened, made them unacceptable.  I still can't understand this.  How could a CHURCH tell someone they aren't welcome?  That is just mind boggling.  It has never happened to us, but I've heard it many times.  That is enough to scare me. It is just another way that autism is so isolating to families.  Not to mention the fact that our lives are a LOT of work anyway.  Thinking about all the prep it would take to get Daniel prepared for church...well, it's just overwhelming.  It has been much easier to just keep Sunday a day of relaxing.   Therefore, the discussions would end and we would go back into our Sunday routine of sleeping in, hanging out and swimming. 


On Wednesday's before Youth Group, the church serves a dinner for all who want to come.  We have attended a few times when the food works for us, because between Zach's allergies and Daniel's pickiness, it seems like it would be impossible but we have actually all eaten there!  During these visits, we didn't realize it, but Daniel was acclimating himself to the church.  One of the first steps of starting something new is getting used to the surroundings themselves.  Without even realizing it, we were doing it.  Frankly, it was nice to be falling into Step 1 without even worrying about it.  It also gave us a taste of the church community.  I liked being there, with the elderly church ladies and the little toddlers and the teens and the families.  It was nice to feel a part of something and I could see Daniel liked it too.  Even if only for a few minutes.  Even if the pinball machine, and snacks are a lure.  Who cares?  It's important for him to feel comfortable.  That is something we can build on.


Then Daniel went up to the Youth Parlor with Zachary one night.  Just for a few minutes before it started.  Most of the kids are up there "hanging out" so Daniel went up with a friend of ours to check it out.  Much to his surprise the youth parlor, among other things, has 3 of Daniel's favorite things:
 1.  a full sized pinball machine!
 2.  a disco ball hanging from the ceiling and
 3.  popcorn


Any one of these is enough to sell Daniel on a place, so having all three is like the Holy Trinity! (look at me getting all churchy)  He was hooked.   So now if time allows, he goes to the youth parlor for about 10 minutes before Youth Group starts on Wednesday to play a game of pinball, or pool (oh yeah, a pool table too) walk around and have a few bites of popcorn.  The first time he ever went to the Youth Parlor a boy named Jack who is Zachary's age offered Daniel some of his popcorn.  It was only a few weeks ago that Zachary told me that now whenever Daniel goes into the Youth Parlor he goes and finds Jack to ask for popcorn.  After all, he gave it to him the first time, he MUST be the keeper of all of the popcorn! 


Watching Daniel become familiar with the church made Todd and I think it just might be possible.  So the discussions began again.  I contacted my friend who is in charge of the Youth Group and sort of got the schedule of what was coming up.  Today we took the plunge.  We jumped in. Ready or not.  But, for this, you'll have to stay tuned for part two. . .