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.

1st Day of 5th Grade

School begins in just a few short hours.  Blessedly, Eli is sleeping!

Mommy....is not.

The last couple weeks have been a transition for E, as he has come from "NO! NOT SCHOOL! NO NO NO NO NO NO....!!!" to "....shrug...I'm kinda ready, kinda not..."  to  "It'll be nice to see my friends again."

He doesn't want to talk about school.  That's hard for me.  To me, if there's a problem, then we need to sit down and talk it all out, so Eli can be heard and comforted and supported and encouraged.

Eli wants no part of that.

The autism prevents him from being able to wrap his head around specifically what is bothering him.  He knows when he thinks about school that he's feeling yucky inside.  But he can't pinpoint specifically what he's feeling anxious about and then put it into words to express what he is feeling, let alone why he's feeling that way.

But Eli's done a lot of internal preparation over the last two weeks on his own.  He started out very nasty.  Hateful, even.  Verbally lashing out at immediate family members, screaming at the dog when she frustrated him, going from even-keel to instant anger and then, being so overwhelmed, that he's just shut down for an hour or more, sometimes hiding, sometimes just brooding and not talking but still in the same room. Eli's told us before that at times like this he just needs time and space....don't touch him, don't try to talk to him, just let him have the time he needs to calm down.  So that's what we've tried to do.

Over the past five days or so, he's spent an impressive number of hours swinging on the porch swing, lost in "his game"... best I can describe His Game is that when he was little, and completely obsessed with Star Wars, he began a game in his head.   He would run in circles on our bed and have this magnificent battle scene going on in his head.  He would literally do this for an hour or more and you didn't dare interrupt him when he was immersed in his game or he would become intensely upset.

Needless to say, when we got a new bed last year, E was fairly devastated when he learned he would no longer be able to run in circles on it.  But he's found other locations in which to play his game, and one of his favorites - at least during the warmer months - is to sit on the porch swing and lose himself entirely in the game.

His Game is a huge comfort to Eli...he loses himself completely in the world he has created.  I'm not sure it's Star Wars any longer...I think it's progressed beyond that to detailed worlds and characters of his own creation, but I know there are still battles being waged from the sounds he makes.  Over the past week, he's disappeared into His Game over and over to comfort himself and as a way to deal with the anxiety of the new school year.  When Eli's here at home, he knows he is safe to go to that other world he has created.  It's just a part of who Eli is, he knows he is accepted here.

Two new pair of soft jammies and a new bedtime routine of reading with 'Mimmy' (Mommy - me) have been a big comfort to him as well.  The reading has become something he's insisting on, so we have had to make a time allotment for it.  If it comforts and calms him, and helps him to sleep, then I'm fine with working it in.  I wonder if it will last the entire school year or, once he settles in to 5th grade and the fear of the newness of it all begins to fade away, if he'll discard the reading time?  It will be interesting to see what morning routines he establishes for himself to cope with a new school year.  Will they be the same as last year's routines, or will they be new?

Will he continue to have sleepless nights?  Or will the school days exhaust him so he can sleep as well as he used to?

I think my own anxiety and sleepless night is being fueled by these questions, but even more by, Will his teachers love, tolerate, help, and work with him as much as last year's teachers?

As always we will strive to take one day at a time and lean on The Father for our strength and endurance, and trust that we will be shown the way to proceed to help Eli learn the skills he needs to cope with everyday life and the world around him.

Right now, I'm going to proceed back to bed and see if I can manage 4 hours of sleep before the alarm screams at me.  Keep my little man in your thoughts and prayers tomorrow as he begins his first day of 5th grade.