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 to the journey - we're learning! 2/29/12

Since receiving a solid diagnosis for our nine year old son, Eli, in October 2011 of PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified, an Austism Spectrum Disorder) -- on top of his previous diagnoses of ADHD, Severe Anxiety, and Tourette Syndrome, I have been flailing around trying to figure out the ultimate question.... What EXACTLY am I supposed to be doing???

There's an ocean of information out there to access...but in order to find what actually applies to your child, you need some guidance.  We are at least an hour and forty-five minutes away from the the Behavioral Clinic, Autism Center in Westerville Ohio (Columbus) where Eli received his eventual diagnosis last fall.  They have amazing resources, but after traveling back and forth to the Center and Children's Hospital all last summer during the evaluations, we knew we could not afford to continue the trek.  There just isn't enough money or sick/vacation time available to utilize their facility.  I sincerely wish we could!

We, of course, made immediate arrangements with the school and we have been extremely blessed with outstanding teachers for Eli's 4th grade year, as well as a Principal and School counselors, psychologists, etc. who are willing to go above and beyond to help Eli succeed.  His most difficult challenges in the classroom were identified and his 504 Plan was developed around that.  It is such a blessing to have a willing team to work with!!!  I cannot thank them enough! 

I also began to search locally, make contact with our local chapter of the Autism Society, talked to a few local contacts.... but I wasn't really feeling informed and connected at all.  It's been entirely overwhelming, and I really didn't know where to turn.

I remember once equating it with being on a rocking ship, while you're going through all the evaluations.  When the diagnosis comes, they say, "Yep, your son has PDD-NOS! Don't worry, there are a lot of resources out there!  Hope you can swim!" and then you're knocked over the side of the ship into this vast sea of information.  "Good Luck!  Let us know if you need anything!!" the professionals all yell from the ship as they wave and drift away.  And then you're floating, searching for something, anything that applies to you and your child and your family.  Sure, there's information everywhere!  As vast as every drop of water that makes up the ocean your floating in, but ... how does it help OUR FAMILY specifically?

After about 4 months, I stumbled across a man's blog on the internet about the daily challenges his family works through with their Austistic 13 year old son.  I read and read and read...I couldn't stop!  I then found another family's blog about their 8 year old son, and I began to recognize some major similarites between their child and our Eli!  I got so caught up reading their blog the other morning, I nearly made myself late for work!

For the first time in a long, long while, I am finding comfort and hope!  I never tire of the encouragement I feel reading the accounts of their daily lives working with their children, exploring & learning from each new challenge they face as a family, learning to recognize triggers, and techniques to combat sensory overload and help their precious guy thru the tough stuff when their little mind go haywire from their day.  Everything THEY go through enlightens, encourages, and educates ME! 

I've already learned a few things that I'll be trying with Eli, and I was astonished to read about one technique that is routinely used with autistic children that Eli himself has already developed as a coping strategy and incorporated it into his daily morning routine, and none of us even realized it!  What a clever boy he is!

In turn, here I am creating my own blog.  Maybe it will help someone else at the beginning of their journey.  Maybe no one else will ever read it, and it will just be my outlet, my documentation of E's progress... because it's really easy to forget just how far he's already come!

So here is our journey through Eli's World ...

(Note: I have linked some of you who I thought may be interested in following this blog for either information, interest, love of Eli, or what have you.  If you do not wish to receive emailed blogposts, please do not hesitate to let me know and I will remove your email.  And I won't be offended at all, I promise!)