One year ago today......

One year ago today we received Eli's diagnosis of PDD-NOS.  One year ago today, our family's life changed direction and started on a new path from which there is no return.  On the anniversary of that day, I look back and think about how much has changed.  

And how much has stayed the same.  

I think of all the Dr. appointments over the past year, and all the parent/teacher conferences and all the meltdowns.  I think of all that Eli has learned how to do by himself, the progress he's made, the accomplishments he's achieved.  I think about the two steps forward, the three steps back and how it seems like our lives just go round and round in this big looping circle, over and over and over, but somehow...somehow....we've still managed to move forward a little bit.  There's no following a straight line between point A and point B in this family's life.  Oh no....we spin round and round, but eventually we get there.

I think of how our family has grown closer, how we've learned more about acceptance and compassion, how we've extended this new understanding beyond our family and reached out to strangers with a kinder, gentler heart and shown them brief moments of love.  A smile.  A kind word.  Or simply by making eye contact and acknowledging them...letting them know we see them and we accept them as they are.

So this day has been an enlightening one for me.  It's been a reminder that a whole year has passed by....and how short a time that really is...and that we've only just begun.  It's only been one year...the first year... of the rest of our lives.  There's no end, but we've certainly moved forward in this journey, if only a small distance.  Our family is solid.  We embrace the future, the challenges, the joys, the Wins! and even the failures, because we learn from those and get smarter.

One year ago today, Dr. Bob told us our son had autism.  And look where we are today.

When you don't know what to say

I'm having trouble writing.

It's certainly not from a lack of things to say.  I could write volumes upon volumes of all that was are dealing with these days.  Somehow the things we're dealing with are far too personal to write about and share here.

Eli's been going through some very difficult problems, but to share them here with the world seems unkind.  I want to celebrate his accomplishments here.  I want to share some of the eccentricities which he displays here, so people recognize why and they accept him as is.  But we're going through changes and challenges that are troublesome these days.  These things have caused some major upheaval to our lives.  I don't feel I can share them here. I don't feel they are appropriate to publicly write about.  I feel they would be unfair and embarrassing for Eli, and I never want him to feel uncomfortable with the blog...he's been in support of it up to now, and I don't want that to change.

So while we struggle through these difficult times alongside E, I feel I am limited on what I can say.  And that makes it difficult to keep up the blog.  I pray you bear with me during these dry spells, and just keep us in your prayers as we work through the tough times.  A recent medication change may be helpful in correcting some of the tough stuff.  Maybe if it goes away and becomes a thing of the past, then perhaps I will feel comfortable in writing about it.

Here in a couple of weeks I will be going in to talk with the entire 5th grade class at Eli's school in order to explain Tourette Syndrome to them.

I don't even know if I know enough about TS to explain it!

I'm hoping the school counselor, whose idea this was in the first place, will help to give me some guidance.  So that should be an interesting experience and one I'll be able to write about!

Til then............

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....

The emotions of an autism parent

I suppose only if you have autism affecting your life can you fully appreciate the full range of emotions you can be put through.  The closest thing I can equate it to is being pregnant.  I remember pregnancy well, even 10+ years later....the feeling of joy, the feeling of fear, being so sad, then so happy...slipping from one extreme to another within a matter of moments.  Back then I blamed hormones.  Now...my child is the catalyst.

No one else can put me through the full gamut of emotions that Eli can.  Take last week for example.  The first week of school.  I started the weekend out with so much ANXIETY about how Eli would handle fifth grade.  Would his teachers accept him?  Would they find me annoying as I tried to help them understand my child?  Would they be willing to work with him and meet him where he is?

Then after the first day went so well for E, I felt so much HAPPINESS and HOPE!  But at the same time I've been PENSIVE and WATCHFUL...WARY even, waiting for the meltdown to happen because of the strain of keeping his behavior together all throughout the day.  Make no mistake...he did very well in school the first week.  But I knew what was to come eventually.

Open House was Thursday night.  I got to meet his teachers and then I was EXCITED for him because they were all so sweet and wonderful!  But then later in the evening my emotions swung to WORRY as he could not sleep Thursday night.  In addition to the worry comes the HELPLESSNESS and the sense of Flailing About, not knowing what to do or how to fix the problem.  How can you make your child sleep when his little body won't still and his busy mind just won't shut down?

Friday morning brought a little RELIEF when I realized he had ended up sleeping for a few hours!  But then there was great DESPAIR and SADNESS as I arrived home Friday after work to hear the screams of my child, lost in the throes of a full-blown meltdown...because by 5 o'clock on the Friday of the first week of school, with only three hours of sleep under his belt, my baby had had enough.

I was overwhelmed with so much LOVE, PITY and FEAR all at the same time, watching Eli stand on the edge of the yard as anger and rage gripped and coursed through him.  Actually fear is not strong enough....I was TERRIFIED he was about to bolt.  He looked so primal, standing there at the edge of our property...refusing to promise me that he would stay in the yard.  Refusing to come to the porch.  Refusing to let me come near.  I knew if I tried to approach, he would run, so I stayed where I was with Ben's car between us, to give Eli the sense of separation, the sense of a barrier, that he seemed to need.

Eli stood there with his shoulders hunched, folding in on himself, with his head cocked to the right at an odd angle... it was a defensive posture, a cornered animal stance, and my fear was that he would suddenly bolt into the road, or the woods, and I wouldn't be able to catch him or protect him.  That I might lose him!

As terrified as I was, I kept my voice calm and my tone lighthearted, and tried to make my words soothing, comforting and reassuring to him.  I knew what he needed right then was time.  Time to come back.  Time to calm down.  Eli could not be rushed or pushed.  This was his world we were both currently lost in, and I was going to have to wait him out.

I got a book and sat on the porch swing.  I invited him several times to join me.  My voice pleasant.  My smile warm.  My words inviting.  My heart broken and screaming Why!?.  This poor little boy, who has currently barricaded himself behind a tree trunk...this precious angel of mine, who has kept it together in his classrooms all week....is finally releasing the stress that's been building all week.  But why does he have to go through this?  Why is it so hard for him?

I kept reminding myself to be patient...to wait him out.

Finally he began to crawl toward me.  Creeping.  Silently.  Slowly. Trying not to be seen.  But I saw him.  And I waited.  I let him inch his way toward me in his own time.  You could see the battle going on behind his face.... did he really want to give up the anger to come read a book with mom?  Little by little he kept creeping until he got to the last tree between us.  He peeked out at me several times, always ducking behind the tree trunk again.

When at last I caught his eye, I smiled.  "You want to come read this book with me?"  Only then did he stand up and walk across the yard to me.  And we read.  We talked.  And he was okay again.  It had been nearly an hour at this point since I had arrived home to the screaming, and I finally got to go inside.  My reward was that Eli came inside with me.  I was feeling not only RELIEF again, but also GRATITUDE and THANKFULNESS that I'd been able to help my son.

Later I would cry and the SAD and FEAR would once again overwhelm me.  The meltdowns have been few and far between all summer....we have not missed them.  But now the stress and strain of school is upon us.  The meltdowns seem much more intense.  I've never been AFRAID that Eli would run away from the house before, so this is a new concern.  I cried and screamed out to God later when I was alone that I can't do this!  I can't even share it with anyone because who would really understand?  And thank goodness no one really does!  But then I calmed down and realized that I would do this, because I had to.  And I supposed that's why I write...to purge it from me.  To reach out to those who actually do understand and live it and maybe it will help them to know they aren't actually alone either.  There are a lot of us out here who do know, firsthand, all the emotions we're going through.

We WILL do this....because we have to.