Taking Control

Not long ago, I was speaking with Eli about ways he could help himself avoid a meltdown.  I'm trying to help him learn how maintain control when the emotions are taking him over.  I was explaining to him that he has the power to stay in CONTROL of himself, by the CHOICES he makes.  He has the power to choose whether or not to continue the path he is on (headed toward a meltdown) or to choose to turn and go a another direction (removing himself from the stressful situation, giving himself some space, doing some deep breathing, etc.) in order to stay calm.

It suddenly struck a hard chord with me.  I've been rolling it around in my head ever since, trying to wrap my mind around it.

I have not felt in control of my life for a very long time now.  In fact, I can't tell you the last time I felt in control.  Was I ever? 

I spend a lot of time trying to be in control.  I organize and arrange and record things in multiple calendars.  I plan ahead, stay on top of things and communicate very well, although it's often not reciprocated. It turns out...all my efforts...it's just busy work!  It doesn't keep me from feeling as if I'm being pulled in too many directions.  It doesn't keep me from being exhausted.  It doesn't solve the fact that, despite being on top of everything, in reality I'm being ineffective in all things!  It doesn't take away the hopelessness of all the situations I feel I'm drowning in or lift the dark clouds of sadness that have been engulfing me for the past year.

There are too many things beyond my control. I'm a "fixer", and I can't fix any of this crap! I trot along for a while, running here, running there, doing a darn good job of appearing to keep up, fooling myself into thinking that I have it all together.  And then God gets tired of watching me run around in circles, chasing my own tail.  He rolls His knowing eyes and throws me a curve...or six.... to try, once again, to get His point across.     

So many things have changed in my life over the past year.  There hasn't been just one event to cause all of this.  Oh no.  One event, I could manage.  Maybe even two or three!  Unfortunately, over the past year, there have been too many situations that have brought out negative emotions.  It has become so very clear to me just how out of control my life has become.  There has been pain.  And fear.  Hurt.  Anger. Sadness. Hopelessness. Deep disappointment.  Anxiety.  Confusion and frustration.  Did I mention hurt?  All the happy has been sucked out of me.  All of it.  And I just can't seem to get it back.

I suspect there are a lot of other women out there who may be in the same place.  

How many articles and autism blogs have I read in the last few months where the writer indicates she has gone on antidepressants or anxiety medication in order to cope?  How many women do I know who are struggling so hard to keep going, but it's requiring medication to do so? I'm not there yet...maybe I should be...but if I don't make some changes, it won't be long until I reach that point.

As I talked with Eli that day however, it hit me so very hard.... "Your life is not in control, Kim....and your current options pretty much suck."  There are too many outside factors, too many people involved, too many areas of my life that are being affected, too many things I really cannot change!

Is this what Eli feels all the time?  Is he experiencing the hopelessness and sadness that has been plaguing me for months?  My heart just breaks to think he might be.  Sometimes when he has a meltdown, I think, "Wow...I'd kinda like to do that!"  Just cry, scream, throw things and then go hide under the bed. 

He might actually be on to something.

But then ... that isn't the sort of behavior we want, is it.  

So in order to help him, I have to figure out how to help me.  Because I say it to him, I - in turn - need to say it to ME, "Don't worry about all that outside stuff...don't worry about what those people are doing...don't worry about the things you can't control, focus on the things you CAN.  Focus on YOUR choices....only the the things you CAN control and change."  

But it's a process.  This is not going to happen overnight.  So today I begin.  I begin to remove the things from my path that are bringing me to such a devastatingly low emotional level. Everything else will have it's place, and that place may be far, far away from me! 

This is MY LIFE.  I will be dedicated to God and my family and I will learn to be dedicated to myself, because out of everything and everyone, 

I'm the one who is most neglected by me.

It's the old airplane principle...put your oxygen mask on before you help someone else get their mask on. I can no longer continue taking care of everyone else because I haven't been taking care of me.  I have nothing....nothing....left to give.  So I begin the process today.  Today, I being to take care of me...FIND me...clear the path...walk away from the un-fixable....put aside the unmanageable...relearn how to live my life so I can be effective as a mother, a wife, a daughter, a friend.  Baby steps.  One change at a time.  I will regain the joy in my life.

Once again, in trying to help Eli, he's turned around and helped me.  

And he doesn't even know it.  

Working on communication skills

Friday evenings, since the beginning of the school year, have been very difficult for Eli. 

He's tired. 

He's been super grouchy. 

He's quick with the negative attitude, the whiny responses, and the sarcasm. 

He's prone to meltdowns and over-reactions. 

I get it.  By the time Friday evening rolls around, I'm "done" with the week too! 

I'm tired.

I'm cranky. 

I'm not wanting any noise...I just want to have it be soft and relaxing. 

I definitely and totally get it.

This morning, very aware that it was Friday again, I talked with Eli about a new approach I would like to take with him.  I reminded him that the last month of Fridays have been ugly.  I didn't want to have a repeat this evening, so how about we try something new?! 

He looked at me, so I knew he was listening.

First I validated his emotions, saying I completely understood that he would be very tired from a long week, and from working so hard at school.  I realized that it's a strain and that we all go through this feeling and that it makes perfect sense he would be feeling this way. 

Then I asked if, this afternoon when Eli gets home from school, if he's feeling upset, angry, stressed, or just yucky in general, if he would be willing to just say it out loud to us, "I don't feel all that good right now!" as a reminder to help us know where he was right then.  To help us meet him where he is. 

I assured him that we would be understanding of his feelings, and help him in any way we could.  I told him I realized he probably wouldn't be able to tell us EXACTLY what was upsetting him, or EXACTLY what he needed, but if he would just try to SAY it to us, it would help us to help be respectful of him.  And if Eli was able to tell us what he needed us to do right then, for him, in order to help him, then definitely tell us! 

Eli listened, and after I was done he was thoughtful for a moment.  Then he said, "Okay" and that was the end of that conversation. 

We shall see how things progress!  I'm not expecting miracles right off the bat, but if we can start helping him learn how to express what he's going through and what his needs are, it will be a major blessing down the road and in the future!

Delayed reactions

Last October, after we received Eli's diagnosis of PDD-NOS, things changed.  Initially there was a lot of confusion and pain, but then as things began to make sense, to explain so much, it brought the brightness of hope, just like the sun breaks through the clouds on a stormy day.

Unfortunately, there's a darker side to living a life touched by autism also, not just for the person living with the diagnosis...but for the entire family.

Poor Eli.  The strain of school has been getting to him.  To the best of my knowledge, he's doing fairly well throughout the day...some minor outbursts, and near meltdown in math class yesterday, which was diverted by the quick thinking of his teacher... but I assume that he's keeping himself together overall.  At least no one is communicating anything differently, so ... I go with the assumption of 'no news is good news' until I hear differently.  

But when he gets home, hours after the fact, the strain of it all is apparent.  Then he begins to have delayed reactions to the stress.  Short-tempered, verbally harsh, sarcastic and flat out nasty, especially toward his brother.  Lately he's been extremely bothered by "All the noise!  There's so much noise!"  I've read that "noise" can be physically painful to those on the autism spectrum.  We're quick to eliminate all noise possible when he cries out.  We've been working to give him the space and time he needs to decompress, to chill out.  It's not always enough.  

Some of us hide away in our computers trying to ride out the strain.  Some of us get angry but sullen and quiet, trying to internalize the stress without further provoking the situation.  Some of us throw up our hands and yell a little to relieve some of the pressure build up, but what does that solve really?!  Not a thing.  Some of us take turns doing a little bit of each.  

Lately I myself have been blessed to experience some of the overwhelming emotions that Eli goes through.  I say blessed, because as difficult as things have been for the last several months, it gives me a profound and deep understanding of what Eli is going through during his difficult times.  And therefore, it gives me a glimpse in the window of how to approach him when my Eli disappears, and the neurological disorder takes over and steals my baby away from me right before my eyes.

The strain of Eli's increased mood-swings, his new tendency of not sleeping (which has increased to around once a week now), his fragile nature since the start of school, the new defiance and extreme nastiness that is presenting when he loses control of his emotions.....his new desire to run out of the house, and threatening to just keep on running, when he is upset.....these are all a part of it.

There's the fear of how I'm going to be a mom to a teenager who acts like this hovering in the background.

Then there's the sad awareness of all the wonderful people whom I have lost from of my life over the past few years.  Some have died.  Some have been ripped away.  Some have moved away.  Some have simply moved on.  It happens.  It's part of life.  

It still hurts.

It still feels lonely and a little like abandonment, even if it wasn't meant to be.

Then I have started a new, wonderful job, splitting my time half between the job I've had for over 17 years, and the new one.  I'm ready for a change, and I love it!  But even positive change can be stressful, especially when you're trying to stuff your already-too-full brain with all kinds of new information, trying to remember everything, trying not to screw things up.....perhaps in 6 months I'll have it all down.  Perhaps.

Then I have to recognize the fact that my 102 year old grandmother, who is one of the most influential and dear people in my life, has been dealing with some serious health issues over the past few months and continues to struggle to make a full recovery.  And - being a knowledgeable adult - I recognize the Circle of Life and know that at some point I will have to say goodbye.  I'm not sure I can, because she's been there for the first 44+ years of my life and how will I possibly function through that much more change?  There will be a vast, empty space in my life, my heart....how will I deal with that?  And how will that effect Eli....he's never had to deal with a death before. Not many people get to know their great-grandmother, but he's had her be an important part of his life for over ten years now.  I can't possibly prepare for the delayed reactions that will bring on him.

Recently I see the approaching dark clouds of more loss on the horizon.  It's too much, Lord, on top of everything else!  Should things proceed and come to pass, I fear it will be far more than I can bear.  It will signify the biggest loss of all and Lord, as much as I've leaned on and trusted in You through all of this...I fear I haven't the strength to make it through all that in tact. I know I need to just let go and trust You.  Knowing and Doing are still working to come together, however.

Still, I get up each morning and plod off into the world.  I smile and help, make small talk, and do my best to help others in any way I can.  But all the while I'm waiting.  Waiting to see what is waiting for us, for me, around the next corner.  Living in anxiety and fear of what might happen.  Waiting for the next blow.  Waiting to see if the next storm comes.  Waiting to be left behind again, to be left alone to deal with the aftermath, stuck...abandoned, and no where to turn.  Waiting to see just how much more can be piled on me before I breakdown.  

But I always get back up and plod forward again.  At least so far, I've been able to!  And that I count as a blessing.  It proves I'm stronger than I thought I was.  I'm sure I have limits though and my biggest fear is that one of these days, I won't have it in me to get back up and move on.  Then where will we be?  

Is this what my Eli goes through on a daily basis?  These overwhelming emotions, the anxiety?  The strain of school, the pressure?  I recognize the anger that leaks out of him when he's feeling consumed by the strain of it all.  I hear it leaking out of me at times too.  I can verbalize my thoughts, my emotions, as well as recognize the reasons behind why I'm feeling the way I do.  

Eli cannot.

He knows he feels horrid.  He knows he's losing grip on the control of it all very quickly.  He's lashing out because it hurts, it's consuming him.  He has no idea why or what triggered it.  He has no way to explain or justify himself.  He has no way to stop it all from happening.

So yes....these months have been deeply cutting, but in turn I am grateful for the insight.  Some days, it helps me to help Eli.  Other days, it just takes the only part of me that is left and sends it through the shredder.  That was yesterday.  Today, I was stronger.  

A friend shared this beautiful reminder this morning:

Proverbs 3:5 "Trust the Lord with all your heart, and lean not on your own understanding.. ."

I will persevere to cling to that as my mantra while riding out this storm.  I'm just hoping my own delayed reactions do not involve antidepressants or anxiety medication, like so many other autism parents I keep reading about.  I hope that doesn't end up being my own delayed reaction.

Sunday Night...Sleepless Night?

This won't be a long post.  I've had a terrible time finding time to write lately.  I've had no time.... the semester has begun and it's been crazy busy.  I'm working my original job still, but only 1/2 time in the mornings.  Now I have begun 1/2 time in a new position in the afternoons - same building, but completely different type of work, learning a completely new set of job duties.  It's wonderful work, but takes a lot of brainpower and trying to remember everything I'm having to learn without messing it all up.  And of course, I maintain my other 1/2 time job as well, two evenings a week.

I haven't had time to share how Eli's school year is going and I haven't had time to write about the fact that the sleepless nights are continuing.  Tonight is one such night.  It's currently 11 p.m. and Eli's still up.  He hasn't been able to settle down yet tonight. Believe me...we've tried!

So, after trying other things to get him to relax and calm down, I've tried another tactic.  I stuck him on the treadmill and he just spent 30 minutes doing a major, pre-set workout.  I'm praying it burns off all the excess energy that's been preventing him from sleeping.

I'm going to go tuck him in now...again.

Please please please please....please sleep baby....