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Wednesday, November 21, 2012

Hope

First of all, I just wants to say thank you to all the people that contacted me here on this blog or on Facebook, sent me cards (and fuzzy socks!) and by text and phone calls to offer love and encouragement after my last post.  It's so humbling to know that so many of you care about us, and it was such a blessing to me during a very low point in my life.  I'm so thankful to say Korban is doing better.  He is out of school on Thanksgiving break this week, and his behavior has been better than it has been in a very long time.  He hasn't been aggressive at all, and he hasn't even let loose his trademark scream.  He has been happy and talkative and very sweet and loving, and I'm a happy mama.  He is still struggling in school, so please continue to lift us up in prayer.  He is only attending school from 8:30-11:30 each day, and he is splitting his time between his mainstream classroom and the special education classroom.  He continues to be very aggressive towards school staff and his peers, which worries me and breaks my heart.  They have been so good and so patient about working with him.  We had an IEP meeting on November 12th, and I thought it was very successful.  His entire team was there, as well as me and Brad, and I felt like we got a lot accomplished.  There is a behaviorist coming to work with him every other week, and we love him.  I feel like he really has a good understanding of Korban, and has been able to offer a lot of helpful insight.  Plus, Korban adores him which is always a very big plus.  The last time he came to the school to work with Korban, he let Korban ride piggyback when he brought him out to meet me.  Korban was proud.  He feels that a lot of Korban's behavioral issues and aggression stem from his intense anxiety.  He said he could tell right away that Korban had a lot of anxiety, and he didn't seem freaked out by any of it and like he knew how to help him cope.  During the IEP meeting the behaviorist said regarding Korban's behavior "Well, imagine having THAT much anxiety and not really being able to talk it out with anyone."  Kinda puts things into perspective doesn't it? 

Oh, and when Korban's first IEP was done at age three, the ruling was Developmentally Delayed.  That was before we were technically diagnosed with autism, although Brad and I knew that's what he had.  I need to share our whole diagnosis journey, but that a whole 'nother loooong post.  So for today I will just say that when he was finally diagnosed at age three, the developmental pediatrician diagnosed him with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).  This is a condition on the autism spectrum meaning that the child meets some of the charachteristics for autism, but not necessarily all of them.  For example, Korban has pretty good eye contact.  Maybe not as good as a typical child, but probably more eye contact than many other autistic children.  I used to think that PDD-NOS was like the least severe form of autism, but I read somewhere that while that can certainly be true, a child with PDD-NOS may be only mildly affected in some areas, but profoundly affected in others.  This would be true with us--Korban has lots of language, although his communication isn't effortless, but he is more seriously affected in the behavioral/emotional area of things.  I don't know if I'm explaining that very well, but that's just sort of my understanding of things.  Anyway, we needed to update his ruling for his IEP, since he clearly is autistic.  So after some testing by the school psychometrist, his updated ruling is now Asperger's.  This was mainly due to his speech and language, even if it was delayed in coming.  We had a neurologist appointment Friday, and I told the neurologist about his new ruling.  He agreed and said "Yes, everyone who works with him needs to know he is high-functioning."  Did you hear that? HIGH FUNCTIONING!!!  Beautiful words to this mama.  Yup, my son is high functioning.  He might beat the mess out of you if he's upset and you are anywhere close to him, but he's high functioning.  We can work with this.  We can.  We will find a way to help him cope with all the anxiety and communication issues. 

I can say this with confidence now that things are going more smoothly.  But I have to say, when you're right in the midst of one of those down cycles, it's hard to have that kind of faith.  It's not that I don't believe--I do.  It's just that it's so hard to keep that insight when things are going so rough.  I get worried that they won't get better.  I worry about the future.  The down cycles seem to get harder and harder rather than easier as he gets older.  And bigger.  And stronger.  My mind goes places I wish it wouldn't.  But it's so hard to stop my thoughts from spinning out of control.  I think "What if he hurts somebody?  REALLY hurts somebody?  What if it's Selah?  What if when he's older he loses control and kills me?"  Those are horrible things to think about.  But when you see your child fly into a rage like I've seen mine, those are things you think.  Or at least I do.  I'm a great worrier.  Not that it's a talent or anything...  I think I'm actually better about it than I used to be, simply because I've been through some tough things and I've learned the hard way that I don't have control.  That I just need to try my hardest and roll with it the best I can.  I know how important a positive attitude is.  I owe my family that.  And most of the time, it's easy to be positive.  It really is.  We are so blessed.  Even when things are hard, it doesn't mean they are bad.  But when things seem so out of control, I struggle.  I don't think that makes me weak, I'm just being honest.  My goal is to be transparent and not hide things so that people understand what we are going through, both the good and the bad. 

Okay, back to the neurologist appointment.  Korban had two EEGs when he was two.  The first one showed random electrical discharges, kind of like misfires I guess you could say.  The doctors called this subclinical seizures.  Those are basically small seizures that happen in the brain but there is not an outward manifestation of them.  A while after that, we were admitted to the hospital and did a 24 hour video EEG.  They hooked him up to electrodes and did video monitoring so they could see if there were any outward signs that were associated with the electrical discharges.  There weren't.  We've been on and off different seizures medicines.  This latest EEG also showed slowing of the brain waves.  When I asked what that mean, the dr explained that it doesn't point toward any specific condition or diagnosis but it is a pretty common EEG finding for patients on the autism spectrum.  So basically, his brain isn't normal, but it's normal for him to be abnormal.  Got it?  Cause I'm not sure I do.  Ha!  I asked if there were any symptoms of the slow brain waves and he said it could cause delays in processing, behavioral issues, etc.  I know a lot of times when we say something to Korban, or when something happens, it's like he has a delayed reaction to it.  So I guess the EEG reading just confirmed that if it seems like he's operating on a delay, it's because he IS!   And just let me add that this doesn't mean that every single autistic person is like him, I'm just referring to the one I know best.  It also doesn't mean he's "slow" or unintelligent, it just means that his brain processes things in a different way than a typical person.  I'm glad we at least know this, because I'm a big fan of having information and it serves as a good reminder that he isn't acting out simply because he's a bad kid or he's angry, he's just reacting to all the confusion and stress that's going on inside his head. I wish I knew what it was like to be him. I really do. I know I need to be more patient.

Okay, specific prayer requests:
--The neurologist is weaning Korban off the anti-seizure med he is currently on and starting a new med.  We've been through so many medication changes, and it always makes me nervous.  But the dr feels strongly that the other medicine would treat his problems in a better and more comprehensive way.  So just pray that he reacts well to it, and it helps with no major side effects.  And please pray that he continues to have good behavior at home and that things get better at school!  I love having my sweet boy back.  I missed him so much! 
--I felt bad that I forgot to ask last time that you guys specifically pray for Selah.  She's such an amazing little girl, and she loves her brother so much.  She was totally freaked out when he was having such a rough time and he did pull her hair quite a few times and bit her leg that one time.  People always ask us how we protect her from him, and all I can say is the best way we know how.  I always try to keep myself between my two kids when I can tell Korban is getting upset and I don't usually walk out of the room and leave them alone, not even just for a minute.  But he's really fast, and I don't always see it coming and sometimes he does get to her.  I know even typical siblings fight, but I grew up an only child and I find it very scary.  Also, it broke my heart to see my normally spunky, feisty girl cower in fear every time her brother came close to her.  She was very clingy to me, which made Korban jealous and she also acted out some by being defiant and even hitting us.  Thankfully, as things have settled down so has she, and she and Korban are playing together again.  Just pray for their relationship and that God grants her strength and peace.  She's an awesome little girl and I know God has big plans for her.
--Pray that I can live out my faith and not have negative thoughts.  I feel more hopeful now than I've felt in some time, and it feels good.  You can get through almost anything if you have hope that things will get better. 
--Continue to pray for me and Brad, that we have wisdom to make good decisions for our family and to raise both our children in a godly manner.  Also, we have an anniversary coming up next month--ten years.  TEN YEARS!!!  We've been married for an entire decade almost, and we dated for three and a half years before that.  We have a little getaway planned, but we have never left our children overnight before.  We have arranged to split them between the grandparents so that each set will only be responsible for one child.  They are totally game and looking forward to it, so please pray our kids go easy on them and that everyone is healthy and that we are able to get away and relax without my stupid worry clouding the whole trip.

Thanks to my friends and prayer warriors.  You guys mean more to us than you know!  We appreciate you coming alongside us and lifting us up when we needed it and pray that the blessing returns to you a hundred fold.  Happy Thanksgiving!