Wednesday, May 29, 2013

Memorial Day Memories


On Monday morning we got a call from some of our very favorite people asking us to come have some fun, so we jumped on that opportunity.  We headed to Memphis to see the Redbirds play.  It was a beautiful day and we got seats in the outfield, spread out some quilts, and let the kiddos frolic. 

The Redbirds have a nice little playground too, so of course we spent some time visiting it.  Selah’s favorite part was digging in the dirt.  Korban was super excited to see some baseball and made us say “Go Redbirds,” about a million times.  The Redbirds lost, but I barely noticed.

Afterwards we ran by the Pink Palace to put those memberships to good use.  We only had an hour left before closing time but we made the most of it.  The kids ran from exhibit to exhibit pointing things out to each other and the adults enjoyed watching them.  Of course we visited the dinosaur.  His name is Stan, by the way. 

I wanted to explain why the friends whom we shared the day with are some of my most favorite people—they are the kind of people you can really be comfortable around.  It’s just so refreshing to be able to be with friends that you don’t have to worry around.  They are so understanding of our family situation and wonderfully sweet to us.  It cracks me up because we have been quite a few different places with these friends and while Korban will pull away from us and not hold our hands, he will happily hold hands with them, all the while smirking over his shoulder at me and Brad as if to say “See?  They’re just so much cooler than you.”

They have two boys and they are awesome.  Selah is madly in love.  She once climbed all the way over a booth in a restaurant in order to cover Jakub’s face in kisses.  She was barely two at the time.  She recently told me that she is going to grow up and marry Korban.  I say, “Oh honey, I’m glad you love Korban, but you can’t marry your brother!” She thought on that for a minute and said “That’s okay.  I will marry Jack and Jakub.”  I then had to explain to her that while she can’t marry her own brother, she also can’t marry a set of brothers.  “You have to just pick one husband,” I told her.  After mulling that one over for a while she said “I pick Jakub!” And then when she thought I wasn’t listening she quickly added “And Jack!” under her breath.  “You don’t have to decide tonight,” I told her.

But they are truly awesome kids and I would be blessed to have either one (but not both of them) for a son-in-law.  Forty years from now…But seriously, I’m a social worker you know, and I took a lot of classes that made me really think about things.  Like the whole nature vs. nurture debate.  Basically it asks are we a product of our genetics or our environment.  Obviously they both play a role, but it’s hard to know which is the biggest sometimes.  I’m always favored the environment side myself.  But now that I’m a parent, I look at my kids and other people’s kids and I think about this some more.  Really cool people like our friends naturally seem to have really cool kids.  So I’m wondering if they get an extra helping of endearing qualities such as moral strength, compassion, acceptance, etc. in their very DNA or if they just learn it by seeing their parents model it over and over and over?  I mean, there are a lot of people that I like a lot, and have great kiddos, but I’m specifically talking about the ones that go the extra mile to love on the people that are “different,” like our sweet Korban.  Parents that embrace people that are different from them tend to have children who embrace children who are different from them.  And that really means a lot to me.  I even noticed early on that Korban’s special education teachers had children that always reached out to us and to the other special needs students.   I’m guessing they had just grown up exposed to children with disabilities and watching their parents love on these kids, and that their hearts were drawn to it as well.  Just something to think about.  Selah also has been around many different special needs children—she lives with one!  And I pray that she always has an open, compassionate heart and isn’t afraid to reach out to people.  One of my mommy friends that has a little girl with Down Syndrome told me that she was in a store once with her sweet little one, and her daughter went up to hug another child about her age.  The child pushed her away and said “You look different.” It broke my friend’s heart and rightfully so.  I pray that we are not guilty of this.  I try to impress upon my children that like the little songs says “Red and yellow, black and white, they are precious in His sight, Jesus loves the little children of the world.” No matter what color someone’s skin is, or if they ride in a wheelchair or walk with leg braces; whether they talk or not, if they flap their hands or do different things, Jesus loves them and we should too. 

I really don’t know how I got off on all of that—I was really just trying to say Jason and Dez, we love you guys and you are great parents.  We truly appreciate you guys including us in your family and loving us despite our weirdness.  And I’m clearly not talking about just Korban.  ;)

And now that I’ve rambled, here are some fun pictures!

Here's a group shot, minus Brad, who took the picture.
 
Korban in the play area, having an important discussion with his daddy.
 
 
Of course, Selah's favorite part of the day involved DIRT!
 
Helloooooo...
 
Our four kiddos checking out the baseball action.
 

Selah with one of her future husbands...also known as Jack.

Here's Jack's favorite part.  He calls it the "polar kitty."

My kids getting ready to greet Stan the T-Rex.  Notice Selah still doesn't fully trust him.  I see a little of fight or flight in this picture.

After the Pink Palace...

Tired after a full day
 

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. 

Go!

Sunday, May 26, 2013

The Coolest Place!

Korban’s monthly infusion was Friday.  We took Selah with us this time, and the nurses are always so good about accommodating us.  Selah was very good and it was so sweet to see her sitting with Korban and trying to comfort him while he waited to get his “poke.”  He did really well; thankfully there haven’t been any major infusion meltdowns since that huge one several months back. 

We promised the kids we would go do something fun if they behaved, and they earned their treat.  It’s kind of hard finding stuff to do on a budget sometimes, but we really lucked up this year.  Groupon ran a deal earlier this year on a membership to the Pink Palace Museum in Memphis, the home of the infamous “real” dinosaur I blogged about previously.  For $85.00 we got a deluxe family membership including unlimited passes to their planetarium and quite a few IMAX tickets.  It basically paid for itself the first time we used it, but the really awesome part is that the membership gets you in free to other museums.  One is the McWane Science Center in Birmingham, which is just a few blocks away from the infusion clinic Korban goes to.  We took him there on his birthday, after his infusion last month and we loved it.  So we knew Selah needed to see it to.  It’s so awesome to be able to get in for free and not even have to pay for parking!  I even packed a cooler so we wouldn’t have to worry about lunch, or snacks or drinks.  It worked out really well. 

So we’ve been doing this infusion thing for a year in a half now--that’s 18 times--and we feel we have it down to a science along with our team of great nurses.  We even felt comfortable enough this time for Selah to stay in the main room watching TV while Korban, Brad and I went with two of the nurses to a private room to put in the IV.  We go to a private room because it has a bed we can lay him on to better hold him and also because he is so loud we don't want to scare all the other little patients! Once we were all in place, with Korban sufficiently held, it only took one quick try to get the IV in his foot, which he prefers, but he still puts up a fight each time.  Once the IV is in they push his Benadryl, which is required for the infusion but he refuses to take by mouth, and each time he passes out asleep almost immediately.  The fighting so hard tires him out pretty good and then the Benadryl takes care of the rest.  Once we get back into the main room Korban likes for his daddy to carry him and then lay with his daddy in the chair and sleep.  Now there is always this lady there who helps with special projects and such to keep the kids happy.  I think she is a volunteer, and she's very sweet.  She goes around to all 10 stations or chairs and checks with each patient to see if they would like their faces or hand painted.  Korban does not care for this but Selah takes her up on the offer each time.  So as Korban was still in the midst of drifting off Selah went with the lady across the room to get her face painted.  Selah requested for it to be a surprise for mom and dad.  When she returned her face was painted like a beautiful little kitten.  She was so happy with herself and how it turned out that it just made her morning to show it off, so she went around to the other patients and did just that.  Also, she spoke to me in meows for a good portion of the morning. 
Korban snoozed right up until the end of his infusion, while Selah watched Dora and bounced around some (it’s hard for a 3 year old to sit in one location for so long you know, but she was super good overall.)  Once we got him unhooked and all of our stuff loaded, we piled back into the van and headed on over to McWane Science Center.  Korban was very excited to be going back, and Selah was super excited too.  I love taking them to places like this.  I just love that it’s hands-on and they can learn new things while having fun.  I prayed that it would be a good experience and we wouldn’t have any outburst of aggression or meltdowns for Korban and that Little Miss would be good too.  I don’t take these family experiences lightly. 


Also, it’s very good to see Korban actually interacting with the hands-on stuff and trying it out for himself.  A few years ago he would only look, but we could tell he was interested so we kept trying and now he dives right in, sorta.  So exciting!

Diving in has never been an issue for Selah, we just have to make sure she doesn’t dive so far in we lose track of her, as she usually hits the ground (or the giant piano) running. 
 
 

So we let the kids play and run around looking at all different kinds of things.  Korban’s favorite level last time was the one with the aquarium area.  (Of course it was!)  He kept asking me to go look at the octopus.  I honestly didn’t even remember them having an octopus, but he sure did.  He even remembered where the area was located and started pulling me toward the stairs as soon as we got close saying “Let’s go see the octopus.”  So we went, but unfortunately the octopus wasn’t in his tank.  I figured maybe they had taken him out to check him or something, so I told Korban he was taking a nap.  He asked me if they folded the octopus up to take a nap, and I said no.  I sincerely hope the poor octopus isn’t dead and folded up in a box somewhere, so that we can see him next time we go!

They also have a stingray and shark tank where you can reach in and pet them.  They’re little hammerhead sharks (I think that’s what their called at least) and not like something from Jaws, and the stingrays have their barbs removed so no worries of any danger.  Korban loves stingrays, and he will rest his hand in the water, but he won’t usually reach in far enough to actually pet one.  I found out why yesterday—he doesn’t like getting that wet.  I’ve known for a while that he is very uncomfortable if his clothes are wet or whatever, but I never made that connection with reaching into the stingray tank.  I kept reaching in and trying to get him to, and then I would rest my hands on his shoulder or take his hand and try to show him and he kept pulling away from me.  He said “Mommy’s like a stingray,” and I still didn’t understand.  I finally figured it out when he pulled away from me yet again and said “Mommy’s wet like a stingray!  You bothering me!” Ha!  Gotta love improving verbal skills.  Truly makes life so much easier!  He was upset because my hands were wet and I was getting him wet.  So I tried to be more mindful of that. 
 

Selah loves the stingrays and would get in and swim with them I think.  When she was younger and we were at the Tennessee Aquarium petting their stingrays she told me she wanted to get a little stingray out to hold and maybe take home with us.  I had to explain to her that we only visit the stingrays, not take them home as pets. 


I love touching the stingrays, but I had never gotten to pet one of the little sharks before.  The staff always cautions visitors to be careful and use a two-finger touch.  But yesterday a shark finally swam close enough for me to touch, and I was so excited that while I remembered to just use two fingers, I pretty much just leaned in and poked the poor shark.  It actually jumped and swam away from me really quickly.  I scared a shark!  Oops.

Selah’s favorite exhibit involved the large soft blocks that you would build things with.  (And  climb on and jump off of, of course.)  She stayed in that area for a long time. 

 
She also liked digging for dinosaur bones and the water feature and the sand table. 
They had a big playground type area.  It was sort of like a huge tree house with lots of little tube slides and climbers.  Selah loves anything like that, but Korban is usually kind of fearful of getting in them (enclosed spaces).  He’s been getting better about this and more willing to try things like that as long as I go with him.  So off the three of us went yesterday while Brad stayed firmly on the ground and snapped pictures.  Of course he did.  Once Korban found something he liked, he just stayed in it while Selah climbed all over the place.  I knew Brad was watching from the ground, but it was a very large area and I didn’t want to lose track of her.  So I kept calling for her and trying to look around for her while I stayed with Korban to make sure he was ok.  There was another little boy playing up there—maybe around 8-9, and he was the sweetest kid.  He totally helped me keep track of Selah.  “She’s over here, I see her!  Climbing on the rope wall,” or “She’s on this slide, if you lean out you can see her.” I really appreciated that kid.  We’ve had several instances like that happen in different places and I just feel like God always sends somebody, and it's very cool.  I told my aunt about this, and she said “God’s everywhere.”  I said “He sure is,” and she said “You wouldn’t have thought about God being in a museum for you before you had kids, but now you know.”  Which I thought was a good point.
 

When it was time to get down and start making preparations to leave, the problem was I couldn’t get Korban out.  He did not want to leave!  I was so glad he enjoyed himself but it took a while to talk both kids down out of that tree.  Literally!  I told Brad that he better be thankful he has a short wife who can still fit in kiddy play structures or he would’ve been paying some 12 year old to climb up there and haul the kids down. 

The only issue came when we were trying to leave and Korban didn’t want to go.  Both kids were tired and he was asking for a drink and a snack, but didn’t want to leave.  We tried to prepare him as much as we could, and I got him to take some deep breaths and Brad offered him a sticker if he left happily.  He still got upset, cried, screamed and scratched me a few times, but it didn’t kill our day.  Honestly, I’ve had worse.  We got out of there and he settled down really quickly.  Thankfully, most of his tantrums don’t last terribly long but they are quite intense. 

We loaded the kids in the van and got them settled with drinks and snacks—water, crackers, and pineapple for Korban; chocolate milk, a granola bar and pineapple for Selah.  They discovered a newfound love for pineapple rings.  They’ve always liked pineapple, but they like to wear the rings on their fingers and eat them.  Fruit jewelry!
 

As we were pulling out of Birmingham, Selah sighed sleepily and said “That was the coolest place…” as she drifted off to sleep.  That’s a pretty high compliment from a three-year-old!  As always, I’m thankful for another chance to make happy memories. 

Friday, May 24, 2013

What I Do All Day...

I am warning you now, this is a gross-out post.  Let me say it again:  It is GROSS!  If you have a weak stomach or you just don't want to hear something gross (even if it is funny, if you have a weird sense of humor) just go on and hit that X in the top right corner now.

Okay...anybody still here?  Wow, you guys are tough.  Or just curious.  Do you ever have one of those days in which you feel like a dog chasing it's tail all day long?  You just run and run and nothing gets done.  I feel like that a lot.  Organization and housekeeping is a constant source of frustration for me.  I want everything to be organized and well-maintained, but it just hasn't fallen into place yet.  We always have clean clothes.  Occasionally they are even folded and put away, although more often than not we are rooting through baskets of clean laundry to find socks that match.  We always have clean dishes, but they are usually dirty ones waiting in the sink too.  I find random stuff at odd places throughout my house.  Korban loves to throw things and I frequently have to canvass the entire house just to find a pair of shoes that match because he literally just walks through the house pulling off clothing items and tossing them.  Of course we are working on all these things, but I feel like I could get SO much more accomplished if I didn't have to waste half my time looking for something. 

My children also tend to strew whatever it is they are playing with throughout the house.  This is starting to get better now that the playroom is officially open for business, but I have to stay on top of them to keep things in there.  We have been advised that we need to be harsher on Selah, since she "should know better" and I know this is true and that it's best to start good habits at a young age.  So we work on, but I'm honestly not terribly harsh on her about the toy business.  Mainly because I feel like we already have so much going on in our family that I'd rather spend my time working with her on loving God, loving others, accepting her brother, etc.  We also spend a reasonable chunk of time doing things such as flying imaginary rockets while belting out the tune to Little Einsteins.  (You don't know that one?  "Oh, we're going on a trip in our favorite rocketship, going THROOOOOUGH the skies, Little Einsteins!") 

So, you may be wondering where the gross is.  Laundry, dishes, strewn toys; this is clutter but not NASTY.  I said all that to say that I might have more time to deal with clutter if it weren't for being up to my ears in the nasty some days.  Please know that all nasty is taken care of right away in an expedient and germ-busting fashion because underneath all my unorganization, I really am kind of a germaphobe. 

Yesterday afternoon, I was on a phone call concerning Korban.  It was not a phone call to a friend, just for pleasure, it was "business."  I do not talk on the phone for fun, and I try to be careful about when I call dr's offices, etc. because Korban usually loses his mind when I'm on the phone.  He's very jealous of anything that directs my attention away from him and will engage in either aggressive or outlandish behavior in an effort to get the focus back on him.  Thank God, the aggression has been better lately, but the "wild and crazies" not so much.  (Still, I'd take that over the aggression any day.  So when you read what he did, that should give you some idea how tough the aggression is since I would gladly take the wildness over it.) 

My cell phone was not getting good service, so I stepped out on the porch.  This is usually easier anyway, because I let the kids go out with me and they like to play on the porch and carport while I talk.  Yesterday Selah preferred to stay inside since she was watching a DVD.  Korban walked outside with me and was playing on the porch.  I thought it was going well, but apparently he decided my conversation was taking too long.  He began digging dirt out of my potted plants (which he has eaten before) and depositing it into our air conditioner.  Now, our central unit bit the dust back during the winter.  We used our gas heat during the winter and have decided to just put in some window units to try to get through the summer, rather than going in debt over a vehicle and a central unit at the same time.  So we had just gotten this window unit on Monday, and now Korban is pouring dirt in it.  Which really made me mad, because none of us like being hot and I sure didn't want the new air conditioner torn up.  So I managed to drag him away from that while patiently continuing my phone conversation.  After I put a stop to the dirt deposits in the AC unit, Korban moved on to un-potting the plants and strewing the potting soil across the porch and carport.  "Pick your battles," they say, "Ignore the attention seeking behavior," they say.

I was determined to finish giving this information update on Korban (and seriously the entire conversation took less than 15 minutes) so I just kept right on talking.  I thought "It's just plants, I can fix it later."  But the things about ignoring Korban is he ALWAYS escalates the behavior until he can find something that you absolutely cannot ignore.  When he saw the plants and the dirt weren't getting that much attention, he went back inside.  Now our doors are glass, so I was standing right outside looking in at him and Selah.  He sat down in the floor and I thought "Oh, no, he looks like he's about to pee on something!"  In case you haven't read before, he thinks it's just hilarious to pee on stuff!  So I start giving him a dirty look and opening the door and as he stands up, I notice what is falling out of the leg of his shorts isn't pee--he's POOPING!  So now I'm frantically trying to wind up the conversation and Korban runs back out onto the porch and pulls his shorts and underwear off.  The thing about kids is, you can pretty much tell what it is they like to eat just by looking at their poop.  Korban's big snack right now has been mandarin oranges.  So when he rips his pants off, they deposit a load of Day-Glo orange poopie right on my doorstep.  Fantastic.  I manage to hang up the phone and catch Korban (who was running his dirty little butt in circles on the porch) and march him to the bathroom .  Meanwhile, Selah is standing on the porch looking at the manure pile saying "Mom, Korban pooped outside!  He's never done that before!"  I couldn't tell whether she was upset or impressed. 

I scolded Korban and gave him a very firm discussion on how we poop on the potty, not in our pants, etc etc.  I don't know if it did any good or not.  So I left him on the toilet and grabbed an armload or cleaning supplies and a garbage bag and went to attack the living room floor and the porch.  That took a while and I had to keep running back to make sure Korban was staying put.  When I got all that cleaning done, I decided to just put him in the bath because he was very gross and I knew that was the only way I would get him clean, other than taking him outside and spraying him with the water hose.  When he saw he was about to get deposited into the bath, he got a really mischievous look on his face, darted past me out of the bathroom and took off running.  In case anyone ever thought that I take everything in stride and never raise my voice or whatever, here's a prime example.  I was screaming like a banshee as I chased him.  "NO!!!NONONONONO!NOOOOOOOOO!!!!"  Guess where he ran to--mine and Brad's bed!  Jumped right up in the middle of it and proceeded to roll his poopy self all over ever surface he could before I hauled him off and took him back to the bathroom.  I was able to successfully get him in the tub this time, and left him to soak in the water long enough to strip all the covers off of our bed and get them started in the washer.  (I did a lengthy soak and then washed them on the allergen cycle.)  Then I went back into the bathroom to scrub Korban with shampoo and soap.  When that was accomplished, I scrubbed the mattress with a wet cloth, then antibacterial cleaning wipes, and then I bombed it with some industrial strength spray--it's like Lysol on steroids.  I don't even know where we got it, but I think it's good stuff.  After that I went to check on Korban again.  He was still happily standing under the shower stream, singing to himself.  I was about to get him out of there, but then I heard Selah coughing, so I went to check on her and get her some juice.  When I went back to Korban, he had dumped an entire almost new bottle of baby shampoo out all over him.  I was distressed by the waste, but honestly he smelled so much better by that point that I can't say I minded too terribly much.  So I got him out, dried him off and dressed him.  Then I mopped up the juice Selah spilled, which really didn't seem like a big deal after all the poop I had shoveled. 

Then I decided that I would take a shower since I felt so gross.  I usually don't shower unless Brad is there to watch the kids, either first thing in the morning or after they go to bed at night.  Mainly because Korban is so clingy and cries for me sometimes and also because I never know what they are going to do while I can't see them.  I obviously can't trust them even when I CAN see them.  But I decided the nastiness of this day definitely called for an exception so I fixed them both a snack and settled them with a fresh Veggie Tales DVD before I went and got in the shower. 

Just a few minutes into the shower, I heard Selah come into the bathroom.  She had an overly innocent look on her face and was trying to turn the water on.  They both love to play in water.  So I poked my head out of the shower and told her no, not to make a mess.  So she gives me that innocent smile again and said "It's okay Mom.  Me and Korban are just playing outside."  Now let me say that we have those child-proof locks on our doors that most adults can't even navigate and I was JUST talking to another autism parent at soccer Tuesday night about how his child had learned to get around those and he has had to move on to keyed deadbolts.  Apparently that day is also here at my house and I have to figure it out while I am naked and in the shower.  I noticed around this time that the reason Selah is trying to turn on the faucet is because she has a plastic watering can she wants to fill that was sitting on my porch before I got in the shower.  Freak-out time.  Selah immediately senses my panic and says "But Mom, it's okay.  Korban's just playing outside.  He's not pooping!"  Always looking on the bright side, that Selah. 

Wandering and bolting a real threat in the autism community.  Very scary.  Korban is an intermittent bolter.  Usually his separation anxiety is enough to keep him close to me, but sometimes when the wild and crazies take over he gets very impulsive and bolts away from me.  It's few and far between enough to sort of give us a false sense of security, and when it does happen, it's bad.  I keep a death grip on him when we are out in public, to the point that he says "Ouch Mama!  No hold my hand!!!"  But I did not know they could break the child-lock cover off of the doorknob.  I strongly suspect Selah was the culprit on that one, but Korban was the one still on the loose.  One of my worst fears being realized and I'm NAKED when it happens.  So I literally leap out of the shower, grab a towel and wrap it around me as I'm running through my house.  I run out on the porch, eyes frantically scanning the road and as I'm dashing down the steps I realize I'm running right past my son.  He is sitting and playing in the potting soil that I had failed to clean up earlier.  What can I say, I was tired after cleaning all the poop.  And at least he had something to play in when he made his big break. 

So I'm dripping on my porch, wearing nothing but a towel and trying to act like I do this all the time so Korban doesn't pick up on my freak-out level and make a real game out of it.  "Hey bud," I say, like we usually talk out on the front porch when I'm soaking wet and dressed in a towel, "why don't we go back inside and play for a while?"  Thank God, he was agreeable to this.  Because it's one thing chasing after him when he is naked, but it is a whole 'nother level of bad when I'm the naked one. 

So back in we go, and I double lock the doors and take the fastest shower in the history of the world.  When Brad got home from work he said "What's with all the destroyed plants and dirt everywhere and How did that whole new bottle of the baby shampoo get used?"  "It's a long story," I told him. 

So to recap:  This is the kind of stuff that happens on a regular basis at my house.  You can come see me without fear of E.coli, because I clean that mess up immediately.  However, you are definitely at risk of stepping on a Lego or sitting on a Barbie.  We won't hold it against you in you don't hold it against us.  My kids breaking out of the house ended just fine.  It's much easier for me to laugh about it than think about what might have been, but please know that wandering is a very real thing, and the autism community has lost two beautiful children because of it just recently.  No matter how good of precautions you take, that's the kind of life we live and it's so frightening to think of what I might miss or not be able to prevent.  But thankfully, my babies didn't go far and I can honestly say that cleaning a huge load of poop off of several unlikely surfaces was the worst part of my day.  If that's the worse thing that happens to me, I can handle that.  After having children, I gained a pretty tough stomach.  So if you want to know what you can do to help out, pray for the safety of all of our children, don't judge my clutter too harshly, and remind me to buy some new baby shampoo if you see me.  ;) 

Wednesday, May 22, 2013

Rockin to the First Grade

Korban's class graduated Kindergarten last Thursday night.  Initially, we weren't planning on him participating because he hasn't really been with his class since last semester, but we were so encouraged after the wonderful IEP team meeting that we decided we would give it a shot.  They were planning on each of the three kindergarten classes singing a few songs and then the handing out of the certificates.  We didn't think he could handle being up on stage for that long, especially with the music and everything.  But his teacher told us that she would sit with him on the front row and then walk him up on stage to receive his certificate.  We thought this was a great plan, but I was still really nervous.  I kept imagining worst case scenarios--Korban grabbing his teachers hair and not letting go, or screaming and hitting somebody, going into a complete rage in front of a packed house and then the other parents being all like "So THAT'S the kid that was beating everyone else up this school year..."

Thankfully, that did not happen. 

During her home visit that day, his teacher did a great job of preparing him for what was going to happen that night.  She told him that if he had nice hands there would be a balloon waiting for him afterwards.  He takes his balloons very seriously and gave her precise instructions on what kind of balloon he wanted--"a circle balloon that says happy birthday." (Even though his birthday isn't for 11 more months.)

Brad and I invited our parents; totally last minute since we weren't sure he was going to participate and mainly because we had so many reservations ourselves, but they all were able to come and were super proud of him.  When we got to the school I handed Korban off to his teacher and we went and sat in the auditorium.  He walked in with his class while his teacher held his hand.  They went and sat in the first row together while the rest of his class went up on the stage. 

The songs they sang were so cute, and the kids did a great job, but I was a nervous wreck the whole time.  I was so afraid Korban wouldn't last long enough to do his part and walk across the stage.  Plus, I was unexpectedly battling a big rush of sadness that Korban couldn't be up there with the other kids.  I think I've adjusted pretty well overall, but sometimes it still just hits me.  After Korban was diagnosed, I went through this stage where I pretty much just didn't like neurotypical kids.  It was extremely difficult to see kids the same age as Korban doing things that he wasn't even beginning to do.  It was hard hearing their parents talk about it.  And it was hard having people ask me what was going on with Korban, when I wasn't totally sure myself.  One thing about most kids--they pretty much say what's on their minds.  I remember Korban being in a group of kids when he was about two and all the other kids playing while he just sat and stimmed.  He was spinning something and humming, which was pretty much what he always did at that age.  One of the little girls came up to me and said "Ms. Melissa, what's he doing?"  I said "Oh, he's just playing.  That's how he plays." To which she replied "Well, he plays WEIRD!" and walked away.  Let me be clear:  This hurt a lot to hear, but that wasn't her intention.  I knew this child, and she's a good kid.  She was maybe three at the time, and calling it like she saw it.  Which, in her mind, was "weird."  So I found it much easier to be with families that were in "mutual weirdness" with us than with people who were "normal." 

Since that time, I've gone on to have my own neurotypical child, and we don't hold that against her.  ;)  And I really did think I was pretty much over having trouble with Korban's peers, but I found myself in this crowded auditorium suddenly choked with tears.  I wondered what it would be like if he could just join in activities and not have to worry.  I wondered what Korban was thinking and if he was wishing he could be up on the stage with his classmates or if he just wanted to get the heck out of there.  He was only sitting a few rows in front of us and at one point he turned around and looked straight at me.  I thought "Oh no!  He can smell the tears!"  Ha!  He is VERY sensitive to my emotions so I smiled and waved to let him know everything was okay and he turned back around.  Just as a side note, I will say that if you are the highly nervous and anxious type, and perhaps you require pharmaceutical intervention to help with anxiety so you don't freak your own kid out, the week of a very big event for said child is NOT the week you should run out of meds and forget to get a refill.  *cough*

When all the songs were over, they did a slideshow on the year in review for the Kindergarten class.  Yet again it was tough to see all the things he missed out on throughout the year.  I kept picking out what he "might"could have done if we had just done this or that.  I kept looking for a photo of him and was about to give up hope when...there he was.  It was a proud moment to see his pictures as part of the slideshow for sure.  Now I wasn't expecting there to be a slideshow so I wasn't sure what to expect when we got there and Brad informed me that the program said there would be, so I think I handled it pretty well.  It was a great slideshow with some adorable kids and lots of fabulous teachers.  I know we are blessed to be where we are.

The awards portion was next along with handing out the certificates.  Now there are three kindergarten classes, and they are fairly large classes.  We were thinking that Korban's class would be first but as it turned out his class was LAST!  Brad looked at me and all I could say, trying to be positive, was maybe some practice by seeing the other kids will be good.  Not sure if I was kidding myself or not.  I was in a panic mode by this point--I was just praying over and over that he would last long enough to have his turn and that everyone would get to leave with the same amount of hair that they came with.  I have a vivid imagination, and it goes into overdrive when I'm nervous.  Korban's teacher has long, beautiful hair and I noticed that the vice principal handing out the certificates did too.  I started picturing them with their hair all piled on top of their heads and protective shower caps on.  But Korban managed to sit just like a little gentleman while the other two kindergarten classes did their awards and certificates.  His teacher told me later that she thought he was going to scream at one point.  He looked at her and said "We use our inside voice in here?" She told him yes, and he said "Inside voice?" again, and that was that.  Whew! 

So when Korban's regular ed teacher got up to give out her certificates, she disregarded alphabetical order and Korban went first--God bless her!  His teacher took him by the hand and they walked up on stage.  Everyone clapped when his name was called just like they did for all the kids.  It took him a minute to get up on stage because he isn't good with steps, but he walked right across the stage and took his certificate like a boss.  Then--my favorite part--he turned around and looked right at the crowd, smiled and waited like "I just nailed this and ya'll better recognize" and everybody clapped again.  So sweet.  I was so proud.  His teacher walked him back across the stage and down the steps while I made pictures and then we walked him out of the auditorium and straight to get his balloon.  (Yes, it was a circle, it said happy birthday on it and it even have a soccer ball.  And she got a balloon for Selah too.  Very thoughtful and just plain awesome!)  We were all very excited and telling Korban how proud we were and I could tell he was proud of himself too. 

I didn't feel sad after seeing him do this--it was a milestone, celebrated in our own way.  "Different, not less." (that's good to remember)  I'm glad I didn't let my anxiety about how this would go keep Korban from experiencing it--well from keeping ALL of us from experiencing it.  I know we need to keep pushing forward and trying new things, even when it is hard.  Even when Korban is with kids who aren't "weird" like we are.  And I know things could have turned out differently than they did, and sometimes things won't go like I would like them to.  But still we keep pushing forward, and we are enormously proud of every step he takes. 

The following verse is how I feel so often about my Korban and I pray that God continues to work on all the anxiety going on that keeps the two of us from enjoying all the life He so graciously gives us.

What would be an adequate thanksgiving to offer God for all the joy we experience before him because of you?
                          1 Thessalonians 3:9

 Going up on stage...
 
 
 Receiving his certificate
 
 "I rocked this, yall!"
 
 
 Showing love to his regular ed teacher


 Going back down...


 Showing off his certificate with his teacher
 

Seriously proud and hanging on to his balloon 


 This is our three-year-old who was NOT very well behaved that night.  When she got her balloon she yelled "I didn't want a balloon!"  So much for being gracious.  You see the yellow Mustang in the background there?  She adjusted the rearview mirror on it whilst the person who owned the car was sitting in it. 
 

 
 And here's the video!  I love this.  :)

Wednesday, May 15, 2013

IEP

We had Korban's IEP (Individualized Education Plan) meeting this afternoon.  It went really well.  I have heard sad IEP stories from other parents (not at our same school--I'm talking about online friends and such) but IEP meetings are not sad or stressful for us.  We are so blessed to have such a great team of people working with Korban.  I really don't want to think about how hard it would be to deal with all the pressures of autism/immune deficiency/financial stuff, etc. and then have to go fight with people who didn't care about us.  I would be much crazier than I currently am if I were fighting that battle too.  Thankfully, we aren't.  Because nobody wants to deal with Crazy Melissa.  Seriously, it just makes my heart happy to know that everybody working with my son actually cares about him and genuinely wants him to be successful. 

That being said, I have to brag on my husband for a minute.  He has worked hard to rearrange his work schedule so that he could be there for all of our school meetings so that he can be actively involved in Korban's education and the decision making process.  It's just so nice to not have to do this on my own and to know that we are walking this road together.  We were talking on the way to the school and we were discussing the plans for the Extended School Year program.  It's commonly referred to as ESY, but Brad said "So what are the plans for YES?"  Totally cracked me up.  I will refer to it as YES school from now on.  And I told him we might need to do an IEP for his dyslexia while we were there. 

There was no dread involved in the meeting.  We were looking forward to it!  His teacher had told me that she was amazed when she started writing out his skills to see what all he had accomplished this year.  And it really is exciting--here's some of Korban's skill list:

--Identify 80% of letters (although he struggles with the sounds they make)
--Read and respond to environmental print
--knows 10-15 sight words
--Listen and respond to stories that are being read aloud to him
--Identifies all colors and shapes
--Can identify numbers 1-10
--Verbally count to 100 with prompting
--Knows the days of the week and the months of the year
--can manipulate an iPad very well

I think that's pretty exciting, don't you?

Our summer is shaping up to be even busier than the school year I think!  I'm not complaining though--we need all the extra help we can get and I'm so pleased that his services aren't ending during the summer.  It's very important to keep him in a routine and not lose any of the skills we have worked so hard to acquire.  We will attend ESY ( or YES school if you are Brad--ha!) two days a week.  His ABA lady is working ESY this summer so there will be a familiar face there with him.  There will only be four other children and there are two teachers so it is well-staffed.  He will also be getting speech, OT, and PT while he is there.  Our in-home ABA will be on-going as well (thank you Jesus!).  In addition to all of that, he is starting play therapy with an emphasis on sensory issues--Brad got this one together on his own but we talked about it at the meeting.  It will only be one day per week.  Like I said, very busy, but MUCH needed services and I can't say enough how thankful I am that all of this is coming together.  It's easy for me to get stressed and discouraged over things sometimes but I keep reminding myself that this is the first year we've truly had ABA therapy with a focus on behavioral interventions, and that it is going to take a while for Korban to really start responding it.  We have seen positive improvements already, and it's just such a good feeling to know there are people in place to help us.  God does know what we need when we need it (and the who)!

Korban will have the same special education teacher next year as this year (again, a big thank you Jesus!  She's awesome.  We have been blessed with such loving teachers.) She will continue to come out to our home three days a week and we will go to the school the other two.  They are going to gradually work on increasing his time spent at school, but it's not something we can just drop on him overnight.  Aggression and behavior continue to be a big source of concern, of course.  We all want Korban to have interaction with his peers, but it's hard when you don't know what he will do to them and he can move very quickly, especially when he is nervous in a situation.  So that will have to be handled carefully. 

My mom kept the kids so we could go to our meeting, which was really nice.  It was a pretty lengthy meeting but as we were pulling out of the parking lot Brad turned to me and said "Look, can we just go get an ice cream and talk for a minute about this before we go home?  Because you know we won't get another chance after we pick the kids up." I readily agreed to this which seemed to surprise him.  But hey, he offered me ice cream.  I figured my mom could hold out for a few more minutes!  ;) 

We stopped at a little restaurant by the school and rehashed our meeting and talked and laughed about other random things and it felt so good to have that time.  And did you know that Blue Bell has an ice cream flavor called Krazy Kookie Dough?  They do!  It's cake batter flavored ice cream with neon colored chunks of sugar cookie dough.  Brad totally laughed at me for choosing that flavor, and the girl scooping it absolutely agreed with him but I think Krazy Kookie dough was a good ending to a good day.  :)