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Tuesday, May 28, 2013

Ups and Downs!

After days like Friday, I’m all like “Yay, success!  We should do this more often!” and after days like Sunday I’m like “WHY do we leave the house?!?”  I know there’s going to be ups and downs, and good and bad times, but it’s still frustrating.  We got ready for church Sunday and headed out.  We gave up Sunday school late last summer, August I think, because that was when school started back up as well. This is when things got so tough with Korban that he started refusing to go to his classes along with other activities that he would normally do.  So we just go to the service now.  Selah happily goes to nursery and Korban goes to “big church” as he calls it with me and Brad.  Sometimes he does fine and sometimes not so much.  This Sunday fell into the latter category…

We had seriously just gone in and the praise band sang a few lines of a song and Korban let out one of his eardrum shattering screams.  It didn’t go with the song real well, but I’m glad it happened while there was at least some music to cover it as opposed to during the sermon.  I immediately left with him and we sat in the van for the rest of the service. 

There really aren’t any words to explain Korban’s screams—it’s one of those things you just have to hear to understand.  It literally makes my ears throb.  It’s SO loud and when it’s very sudden and you are unprepared for it, that’s the absolute worst.  He usually does it when he’s angry about something, but sometimes (like on Sunday morning) he does it for reasons only known to him.  It will literally almost make you fall off your seat.  He did it in a restaurant once because he bit his tongue and I think a few people actually did fall out of their seats.  I know, because I was one of them.  Or imagine driving down the interstate, everything totally quiet, in your own little world, and all of a sudden you hear a scream that sounds like someone is being tortured.  I’ve seriously almost wrecked. 

Sunday didn’t improve much after that.  Honestly, it hadn’t gone real great before then either.  Sometimes you can tell as soon as Korban wakes up that he’s struggling and the day may be rocky at best.   He continued to scream on and off for much of the day, and I wound up taking Advil last night.  He was happy for the most part as long as we played outside, which we did for the best part of the day.  It’s easy now because it isn’t terribly hot and it wasn’t rainy or anything yesterday.  But those days that he’s determined to be outside and we can’t are miserable all the way around.  It seems like screaming like that would hurt his throat or hurt his head as sound-sensitive as he can be, but it’s like he’s immune to his own noise.  Last night I gave him some of his favorite crackers for snack and he was asking me for more before he even finished what he had.  I wasn’t telling him no, I was just saying to eat what he had, but he got so upset he screamed until he threw up the crackers he had already eaten.  I just don’t understand.

Back to church though—I just feel worse when he acts out in church because it’s usually a relatively quiet and peaceful experience and I don’t want us to be the ones distracting people from the service.  But honestly, even when Korban is behaving, I sometimes feel like I don’t get too much out of the service because I am so uptight and worried about what he might do.  Don’t get me wrong; I get a lot of prayer time in.  Unfortunately it’s mostly “DearGodpleasedontlethimscream,” over and over.  Deep, huh?

If screaming is a means of escape for him, he got exactly what he wanted Sunday when I jumped up and left with him.  But what else do you do?  I’m NOT going to sit there and let him continue to scream and disrupt the entire service. Let me explain—it’s not like he usually just screams once and it’s over with.  It usually happens again and again and again.  More often than not, it’s also a precursor for worse things to come.  First he starts to scream, and then something is broken or someone is bleeding.  Or both—sometimes we get something broken over us that causes us to bleed!  This is why it is necessary to intervene, i.e. by leaving or whatever you can do to calm him.  Also, he didn’t calm down just by leaving Sunday.  He continued to scream intermittently while we waited for Brad and Selah.  I couldn’t see that anything was wrong, but something was obviously bothering him.  He even asked to go back into the service but I had to explain to him that we couldn’t stay because he was screaming. 
Our ABA lady told us that her boss had told her instead of going for the first part of church and leaving when the child gets unruly, to go at the very end of service.  Like just for the last five minutes, and then you leave when everybody else does, and you reward the child for staying to the end of the service.  And the next time, you go in ten minutes before the service is over and you gradually increase the time you are staying.  That way they don’t get “rewarded” (by getting to leave) for their bad behavior.  I thought that was really brilliant.  The problem we have is that Korban doesn’t always misbehave in the way that I usually think of kids misbehaving during church.  You know, talking, squirming, etc.  He does plenty of that but suddenly letting out a bloodcurdling scream during church just takes it to a whole ‘nother level, you know?
Brad felt bad that he stayed and I didn’t get to on Sunday.  He said from now on, he would stay home with Korban and let me and Selah go to church.  I said a fast no to that one, but told him we could maybe take turns for a while.  We did this when Korban was a baby and his immune system was so bad his doctor advised us to keep him home.  (Yep, that’s right, he didn’t go anywhere for a long while when he was so, so sick.  Thankfully those days are behind us now!)  We have also done this on and off at times when the behavior has been bad.  Just staying away from places is the easiest most of the time but not necessarily the best.   We could just all stay home all the time and not have a Church family.  We are both able to and do share God with our kids on regular basis.  So we could just have Church as a family at home. 

But you know what?  We sure would enjoy getting to GO to Church as a family…we know the Bible tells us to do just that.  We don’t want to just go for appearances but we truly have a desire to worship God and we feel that we can do that best where we currently are.  We love the worship at our church.  Korban’s favorite is the drums, so it’s not strictly the noise at church that bothers him, you see.  We want that connection with Christ that we can’t get by just staying at the house. 
  Hebrews 10:25 states:  “not giving up meeting together, as some are in the habit of doing, but encouraging one another—“.
We have had successes with this before but it never seems to last. I know it confuses people too—there we are on a regular basis, involved in as much as we possibly can be, and then all of a sudden we just sort of drop out of life. We have been very successful with not hiding Korban away.  He has done so much and we keep on pushing him to do more.  He loves Church, he’s proud of his Church and talks about each part of it often, so I know he does want to be there but it’s just that there is something that keeps him from enjoying things sometimes.   We have been successful with taking him early so that it all builds around him, but this fails at times too.  We talk to him to prepare and encourage him for what he is facing.  He can be so excited about going and then just explode once we are there.  In the middle is the hardest.  But we don’t want to give up.  We want to persevere. 

Please understand that we aren’t looking for another church—it’s not one of those scenarios where I’m wondering if the grass is greener on the other side.  I’m looking to fertilize the grass in my own yard, so to speak.  I’m also not asking for anyone to offer to keep Korban or whatever so we can go to church (maybe for a date night or something but that’s for another blog lol).  First off I’d just worry he would beat you up.  Secondly you need to be at Church yourself, aren’t you paying attention here?    What we are really looking to do is find a way for him be a part of the Church and services too.  We’d like to serve and not just be served, but our lives are so unpredictable I just feel like we’re flying by the seat of our pants most of the time.  There’s gotta be a better way…right?
I’m looking for some honest feedback here.   How do you guys that have children with autism or other special needs handle church?  Do you have any tips or ideas that might be helpful to us?  Any suggestions?  And if you have made the decision to just stay home, please feel free to tell me that too.  No judgment here—I’m just thinking surely we haven’t been the only ones to ever face this obstacle and we can all learn from each other and offer encouragement as well.  Our church has been very supportive and has come alongside us in our journey.  Several people have told us that they want to help us more, but seriously don’t know what to do.  Here’s the thing—I totally understand that because we don’t know what to ask for!  It’s so hard.  Especially when you are dealing with the aggression like we are and just my usual reluctance with not wanting to be a burden to anybody.  So any suggestions anyone has on how to better integrate children with autism and their families into religious services would be greatly appreciated. 


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