Sunday, January 2, 2011

Going Back to Church Has Its Challenges - A Christmas Eve to Remember

Almost every Sunday for the past year and a half or so, our family has been attending church in Vancouver, WA at a church called Lifepoint. Prior to that, we attended a church named Journey in Camas, WA.  It was appropriately named and the place we needed to be when we learned of our sons being diagnosed on the autism spectrum.  Before Journey, we lived in California and did not attend church regularly.

John grew up in the Catholic faith and we married in a Catholic church in San Jose, California.  I grew up believing in God and considered myself a Christian, however our family did not usually attend church service unless one of my Grandmas was in town.  Since one Grandma was Catholic and one was Protestant, I had exposure to different religious practices.  I always found it interesting and intriguing as I do to this day but I continue struggling to find a church that I can truly call "home".  For me personally, a lot of my spiritual journey has come at home and through life experience.  I am not ready at this point to affiliate with any one particular denomination.  

That being said, our family prays regularly at the dinner table and at bedtime and whenever we feel the desire or need.  I want our children to have a personal relationship with God and for Christmas, John and I got them daily devotional books for their respective ages (4 and 11) and I believe these will be great conversation starters and faith builders.  

So why is today's post titled, "Going Back to Church has its Challenges?"  Christmas Eve...  Christmas Eve church service to be specific.

If I had blogged on December 24th, I would have told you of great intentions and tremendous heartbreak. I would have shared a little humor courtesy of Ryan (now that I look back in retrospect) but also a healthy dose of embarrassment and humility. 

If you're a new reader to my blog, welcome!  I am the mom to two sons who were diagnosed a little over 2 1/2 years ago with autism and Asperger's respectively.  About a year later after our family drove across the country to attend a national Autism Society of America conference in Illinois, I came to the self-realization or should I say allowed myself to accept the fact that I had grown up as an undiagnosed girl / woman with Asperger's.  Yes kiddos, your Mom is on the spectrum too!  (No wonder we thought Dad was the weird one. He's the only neuro-typical in the bunch, whatever that means!)  We don't allow autism to define us in our family but we realize that it certainly comes with a wide variety of challenges and co-morbidities. Although the diagnosis is not something I would think any parent looks forward to hearing, in some ways it is a relief because now at least we know a little bit more about what we're dealing with.  Although autism is a spectrum disorder meaning that no two people with autism or Asperger's are the same or will present their symptoms or autism in the same way, there are some similarities that I share with my children and it allows me a perspective in parenting that I feel God blessed me with for a reason.  His reason...  one I still work on understanding at times!

Well, I digressed a bit but I wanted to make sure that new readers to my blog or those who hadn't been here in awhile understood a bit about our family dynamic before I went into what happened with our family at church on Christmas Eve.

John thought that it would be nice for us to attend church as a family.  Although we talk about it regularly, we wanted to show the kids that there is a reason for the Christmas season that isn't just Santa Claus and gifts. We all enjoy singing and thought it might be nice to attend service, sing some holiday themed worship songs and listen to a message that we anticipated would be uplifting and heart-warming.

Normally Ryan is attended to in the church preschool.  The couple that watches him and other 4 & 5 year olds know that he has autism.  They are aware of many of his challenges and they give us a pager so that should Ryan have a special need during a service that is one that there is trouble handling, we can discreetly leave and attend to him.  During his potty-training stage, we were buzzed once and I think there was one other incident as well but most every week has been a positive one.  

Although Ryan usually stims in one form or another (spinning is a common one at church) and does frequently get a case of "the sillies" or "wild body", we believe he is accepted and loved in the preschool classroom.  There is a wonderful couple watching him.  We look forward to hearing him talk about God and seeing each week what church lesson coloring sheet he has colored for us in orange.  Always orange! If they ever run out of orange, there may be an issue!  A dear friend and also Aspierations blog reader, June sent Ryan a package of 64 orange Crayola crayons for Christmas.  June, if you're out there, the crayons were SUCH a huge hit and quite the surprise.  "64 Orange Crayons?  64 ORANGE CRAYONS? Oh My GOSH!"

So as I was saying, normally while John and I attend service in the main church area, Ryan is in the preschool wing and all is generally calm.  When Justin was in 5th grade, he also was in a special Sunday school area for kids but once he became a 6th grader, he started sitting with us in the main service since the middle-school / high-school group is still a little old for him socially.  It's something we're working on but for now, we feel it's the best decision for a variety of reasons.  For one, Justin has challenges sitting still.  He needs sensory breaks and although the strategy of using fidgets or a magazine can help, it can be very hit-or-miss each service as to how well his focusing skills will be.

John and I figured optimistically that for Christmas Eve service both children would be on their best behavior.  I think the logic was that with the next day being Christmas and Santa coming that night (assuming of course they were on the "nice list"), sitting still in the balcony area for a short service really wouldn't be that bad.  They could stand up to sing.  They could hold each other's hand.  They could have a magazine.  If they needed a sip of water, we had a water bottle.  We'd all be in a happy mood with a fun family spirit.  I mean, seriously, what - could - go - WRONG?  

Cue music and dream sequence (or is that nightmare sequence)... "Wild thing, you make my heart sing... you make everything.... groovy... WILD thing!

It's not like the whole balcony section would think that my older son was trying to fling himself over the mezzanine as he chose to fall down and crash no less than four times.  Nah, that wouldn't happen.  If it did, it would never be right near the time that my younger son launched himself into a full force run from the top flight of the upper stairs to the bottom of the lower stairs, then darting in laughter and glee across in front of the stage where the pastor (new to the church... 3rd time there) was preaching on a serious note. That would NEVER happen now, would it?  Only in the movies, right?

Of course if something incredibly embarrassing like this were to ever happen and the 4 year old of the family had his much less spry mom chase him down 3 1/2 flights of stairs, past the center stage (where he greeted everyone with a sly grin), then on in a mad dash to the opposite side where he would subsequently leap like a gazelle, like a young stag up ANOTHER 3 1/2 flights of stairs, the place would be relatively empty, right? There would not be a packed church with say... 300 people all with gaping open mouths, big bug eyes and alternating gasps of dismay, laughter, horror and then laughter again? 

The good thing... (if any of the above were to have happened of course) is that many adults out there in the audience commended themselves that evening on their own marvelous parenting skills.  You can say that my sons helped perform an act of self-esteem boosting for the church.  I guess there was a reason for it after all.

Looking back, I suppose I should have known that things were going to go off-routine when we didn't get our normal seats where we planned to have the boys between us with no access to the aisle. As it turned out, the boys initially sat in the front row of the balcony where we normally sit and John and I sat (or should I say, tried to sit) directly behind them.  Immediately there was wild body, noise, stimming and body crashing.  We tried to do one child sitting with one parent but there are only so many times you can get up and down without disturbing people.  They weren't having any of the 1 parent, 1 child bit.  Now normally we might be able to calm them, prepare and overcome obstacles but it was crowded, the service was starting and there were other factors in play.  

The people next to the boys on the right were not happy at all.  We had seen them at church many times and they always seemed very nice but this particular evening, Christmas Eve, the antics of our boys (and of course the parenting of me and John) did not go over so well.  They did not realize our boys have autism and since our children look "normal" (for whatever that's worth), the assumption was made that they were being spoiled, disrespectful and rowdy.  In our family we don't use autism as an "excuse" but we do try to educate and empower people regarding some of the challenges that come along with being on the spectrum.  When people look at our 4 1/2 year old who is as big as a 6 year old, they expect him to have the behavior of at least his age and to understand commands or questions that are beyond his maturity. He is academically on track but has the emotional and social maturity of a younger child, probably that of a 2 year old.  Our older son is 11 and again, academically he's above his age but socially and emotionally, he has challenges.  

Add in sensory overload to the mix, a week off of school with routines changed, sleep schedules way off, a couple Christmas cookies, the anticipation of Santa and Christmas and opening gifts and well... I guess we should have been better prepared for overcoming obstacles with our sons.  I know it is naive but I thought... hey, it's Christmas Eve.  It's church!  I prayed multiple times in advance that all would go well.  God knows what our family is experiencing.  He'd be there.  

Unfortunately, God had another lesson in mind for our family and I suppose for me in particular as I got to be the one playing Stairmaster 2010 chasing my son throughout the packed church.  

It was what it was and although John and I each tried taking Ryan out of the service area multiple times while the other would work with Justin who was having his own challenges, the Christmas Eve service for our family that I hoped would provide inspiration, love and a closer relationship with God eventually led to an embarrassing confrontation with other church members and got to the point where we felt we had no choice but to leave.  Things were said that made us feel unaccepted, unwelcome and hurt.  I do understand the context of what was said and the heightened emotions but still... it was Christmas Eve.  I thought church would be the one place our family with 3 autism spectrum travelers could stop and rest and spiritually refuel without being judged, looked down upon or felt sorry for.  

I could go into more detail but I sense myself becoming stressed as I relive the situation in my mind again (much of which I have not even shared it was so embarrassing) and I don't see it healthy for me continue down this path quite yet.  Maybe when a few more days have passed I can revisit it and do a follow-up. 

What I will say is that Christmas Eve night as our family walked across the parking lot to our car, me in tears, John humiliated, Justin nonchalant and Ryan giggling, it did cross my mind and John's as well that we not go back to Lifepoint Church.  I know it was the hurt talking...  the embarrassment whispering, the sadness chastising me. Yet, I also knew in another part of my heart that this was a test of sorts.  It wasn't the sort of a pop quiz I was looking to take but it was one that if I passed, I would surely learn a lesson which would make me stronger.

Although we did not go back to church on Sunday, December 26th, we did go back today, Sunday, January 2nd. Ryan went back into his Sunday preschool and Justin promised that he would sit respectfully with us and read a magazine, get a drink of water or go into a quiet area to stretch or sit if he needed a private sensory break. Although my stomach did flip-flops the whole ride to church, we were even going to try and take our regular seats in the balcony and face the people around us.  Our seats were not available so we went to a different side of the church.  I have to say, I was a bit relieved... and pleased when no-one asked for an autograph for our recent dramatic family performance in a church setting.  (I do believe Ryan was trying for a Tony award...)

Aspierations blog friends and visitors, I thank you for staying with me up to this point in my blog.  I realize my writing this evening was discombobulated.  Heck, I'm feeling discombobulated right now!  (Try saying THAT word 10 times fast!) Things are getting better though! 

I know it may seem weird but the situation that happened at church helped give me a big Autism Awareness reality check and a well-needed kick in the booty.  I feel inspired more than ever before to do more to learn about autism and Asperger's and to help children and adults who are on this journey personally or along as a friend, parent, sibling or caretaker riding shotgun. 

I look forward to sharing my journey together with you. I'll be blogging again tomorrow.  Hope you'll come back!

Blessings, love and plenty of light shining from my home to yours...
Karen

10 comments:

  1. Best Blog of the Year So Far! I Loved it and it was perfect!

    Love,
    Johnny Cat

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  2. LOL, thanks! You had SO many to choose from! I do appreciate the accolades. Great job on your new blog as well. It's surprising how in sync we were on sharing our Christmas Eve story considering neither of us knew what the other was blogging about.

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  3. I feel for you! I am sorry you had to go through that humiliating situation. I am sure you did everything you possibly could but sometimes despite best efforts, children just act out, whether they special needs or not. My own girls have provided plenty of moments in public places where I wanted to disappear. Not church, not yet. I like your attitude about it, taking it as a learning lesson and a test of your faith. Thank you for having the courage to share and kudos for going back so soon. It helps other families like mine remember we are not alone and we should never give up.

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  4. Fascinating, funny and entertaining blog. Remember, churches are full of sinners!!! You will laugh at this one day... you were there for a reason... just like the line from my favorite Christmas song... "We are the reason that he gave his life, we are the reason that he suffered and died. To a world that was lost, he gave all he could give to show us the reason to live." Read your Dragon Tattoo book and you'll know how to handle that crowd of sinners next time. :) This blog was worth the wait!!!

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  5. Thank you so much for your comments, Anonymous 1. I truly did try everything I could think of at the time. Of course afterwards when I was away from the situation, I thought of things I might have tried but Monday morning quarterbacking only goes so far.

    The incident was embarrassing BUT I think it's important to share this kind of stuff because it is real life... raw drama and I suppose situational comedy as well. :-)

    Thanks for your support!

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  6. Hi Anonymous 2!
    I missed you and appreciate reading your comments again. Thanks for stopping by! I DO need to read my Dragon Tattoo book. It is waiting for me and one of my personal goals for the year now that things have slowed down a bit again is to make sure that I have quality reading time away from the computer. I'm eagerly looking forward to the book and will let you know when I've read it!

    You brought up an interesting point that churches are full of sinners. It's true, isn't it? We all are! Looking at it from that perspective, I really shouldn't feel ashamed. I should feel human... (and perhaps a bit sore from my Stairmaster jaunt. Thanks, Ryan for helping me prep early for my New Year's exercise goals!)

    The lyrics to the song you mentioned are not familiar to me but I will google them and find the song on YouTube. I always appreciate your recommendations!

    Thanks as always! :-)

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  7. Hi, Karen,
    It's so good to see you back and blogging! You were missed!

    I am so sorry to hear about your Christmas Eve drama and wish that I had solutions or suggestions to help you. Unfortunately, people who do not understand can be critical. They come to worship and do not want disturbances. AND, Christians can be as kind or as rude as anyone else. I am so impressed with your wonderful spirit and post-Christmas Eve humor in such a difficult situation. Kudos to you and John for taking them to church in the first place and for your beautiful intentions to share in the true spirit of the season as a family, for being prepared to trouble shoot any situations that may happen, and for doing your very best to bring the situation into control. AND kudos for going back! Christmas Eve is tough for any kid. I remember sitting in church on Christmas Eve and being restless just waiting for it to end so I could go to Grandma's house for food and presents, and more presents when we got home. Would going to church on Christmas Day be better for your situation than maybe trying to go on Chrustmas Eve when there is so much anticipation? Or maybe some quiet family time at home with a short reading of the Christmas story at home and singing of some carols? Under such difficult situations, your grace, understanding of the situation, and humor are a shining light. God bless you all!
    Hugs,
    June

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  8. Hello June!
    Thank you so much! :-) Hope your first day back at school from Winter Break went well and you were able to get warmed up!

    I do realize that Christians can be as rude or kind as anyone else but before attending, I think I had some sort of idealistic fantasy of everything being just right. Perhaps I was hoping for some sort of Kumbaya, My Lord moment.

    You a very good point in that Christmas Eve is tough for any kid. The church we attend did not have Christmas day service so Christmas Eve was our only option. We have a new pastor and it was his third time preaching so we were interested to hear his take on Christmas.

    I do think your suggestion for the future is one to certainly be considered. There is no way we need a 2011 rerun. To be truthful, quiet family time at home reading the Christmas story and some caroling would have probably been a better choice for all of us however I do think God had a lesson for me that day... and it was more than just great blog material! :-)

    Thanks so much for your kindness, friendship and support!

    Blessings!
    Karen

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  9. I am an informally diagnosed Aspie with two formally diagnosed children. I pastor a very small church in Lawrence, MI called Lawrence Bible Baptist Church.

    There are many individuals that go to church in the same way we attend the theater. So, they will be frustrated or angry if their experience is not what they expected it to be.

    The church is supposed to be a representation of Christ on earth. For that reason we should act like Jesus and be a safe, welcoming place for all those who want to learn to know Him.

    So, instead of being confronted, folks should have offered to help and then just either put up with things or moved to a different location.

    Adam Parmenter
    http://aspiesinc.blogspot.com/

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  10. Hello Adam!

    Thank you so much for stopping by Aspierations and commenting on my blog. I think it's awesome that as an Aspie and the father of two formally diagnosed children, you're a pastor as well. What a wonderful way to spread the word of God but also be an advocate for autism awareness as well.

    I appreciate what you shared. Now that time has passed, I look back at the situation with more thoughtfulness and understanding and use it as an opportunity to learn rather than focusing on some of the feelings I was experiencing that evening.

    I checked out your blog and look forward to reading more of your writing.

    Happiness and success to you and your family!
    Karen

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