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.

New habit

Now that Eli has learned to whistle....he does. 

All the time! 

I feel bad asking him to stop.  After all, it's taken him over five years to master the skill.  But it's become an unconscious habit he has formed...just sitting there, whistling. It very well might be considered a new tic, but for now we'll just call it a habit.

Walking through the house...whistling.  Playing video games...whistling.  In the bathroom...whistling. 

Most of the time I don't even think he's aware he's doing it.

"Eli!  Please stop!" is often being requested by one member of the family or another.  And he does.  For a little while.  Then he begins to whistle again.  It's so shrill and and piercing.  And neverending!  He just keeps whistling and whistling.

I'm sure in time the whistling will no longer hold his interest and he'll move on to something new. 

Not sure if I look forward to that time...or not....

Big Brother's Birthday

I'm always on here bragging about Eli and what a great kid he is and how proud I am of him.  

Today, it's Ash's turn.

Today is big brother Ash's Birthday - he's 15 years old!  He's such a wonderful guy!  I'm so proud to be able to make the claim that "I'm Ash's Mom".  No one else can make that claim...I own it, and I feel so honored!   

I'm Ash's Mom.  

 Oh, it sends pure joy through my very soul! 

Alexis and Ash, May 2012

Ash humbles and blesses me on a daily basis because he is such a good person.  I know Ben and I have done a lot to ensure we raise our boys right, but I still think a lot of Ash's really good qualities just naturally come from within him.  I think it's just "who Ash is"...and I love him so much for his "old soul", his humor, his sense of chivalry, his intelligence and the fact that he has a really good head on his shoulders.

I watch him with Eli.  Sure, they have their moments where they both want to rip each others heads off, but what siblings don't?!  But I also see the patience Ash shows Eli and the compassion, the tolerance and understanding.  Because of his connection to Eli, Ash will be a more compassionate, tolerant man.  I see how difficult it can be for Ash at times and how he fights his own emotions at times in order to do what he knows is the right thing.  And I see the brotherly love they share.

The other night I listened to Ash and Eli giggling over a video game.  Just two brothers, openly laughing out loud and being together.  They were cracking themselves up and sharing the fun together. There was no autism in the room in that moment. Just two brothers, sharing hilarity and making fun memories for each other and with one another.  I was in the kitchen fixing dinner, listening and feeling my heart swell with love and hope and promise.  I raised a silent prayer of thanksgiving that Eli has his big brother Ash in his life.  Ash gives Eli so much that I could never give.

I am Ash and Eli's Mom.

There are no words to describe how I feel right now.

Saturday we'll take Ash's Birthday Celebration to Texas Roadhouse for dinner, along with Ash's sweet girlfriend Alexis.  Nothing screams PARTY like STEAK, as far as Ash is concerned. Of course the rest of the family was more than happy to join in a steak celebration!  Yum!

Happy Birthday, Ash. 
Thank you for being You.