About Me

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Ohio, United States
My journey before and after bariatric surgery.

Saturday, December 8, 2012

Her Own Special Way

(Written last night, but had trouble loading the video so I had to wait for my tech savvy hubby to help me out!)

Friday evenings are so hard for Eli.  The strain of the week catches up...the sensory overload overwhelms....his patience ebbs away along with his self-control and inevitably, more often than not, a Meltdown occurs.

Tonight was no different.

Eli seemed tired.  He wanted to play his video game again.  It's the weekend now, so I said okay, he could have another hour.  Well, he ran into a tough place in the game, got frustrated and completely lost his cool.

Sami, our dog, starts barking when Eli starts screaming.  I don't know if it's because his shrieks hurt her ears or if she's just upset that he's upset.  Probably a little of both.

Yes, our house is often an unpleasant cacophony of screaming and barking on Friday evenings as the two youngest residents just lose all control.  A weaker person...or perhaps a smarter one!... would just run and hide under the bed, but not me!  Nah, if you're looking for me on most Friday nights, you'll find me right in the middle of the fray trying to calm all parties down!

I was in another room when I heard the hysterics begin.  By the time I reached Eli, and was able to convince him that I was "safe", get him to come into my arms so I could lead him into his Safe Zone (his room) to help bring him back down to calmer level, the dog was just all in a tizzy! She pranced along with us into his room, barking the whole way, and jumped up on his bed to lay with him and comfort him in Her Own Special Way.

I'll just let you watch for yourself what exactly Her Own Special Way is...........




Friday, December 7, 2012

Let no opportunity go by to advocate for your child........

This was originally posted elsewhere on October 6, 2012 but I wanted to include it in the blog

Great day with my little man! 

One little incident in Walmart where I thought we were going to have a meltdown over a bag of candy. Eli wanted two, I said he had to pick one. Things began to escalate. 

The two college kids behind me in line were watching every exchange intently as I talked him down, talked him down, talked him down until he finally, unhappily, stalked over to put one back and then st
omp away, arms folded, glaring. 





I never apologize but always feel the need to explain my child.  After all, it's my job to prepare the world for him, and I must educate the world as to what they are what they are about to receive. 





So I looked at the young man and woman and said, "He's not spoiled...he's autistic ...and these things are very hard for him." 





The young woman said, "Awwww!" with a smile and suddenly we weren't being judged anymore, we were being accepted with compassion, and understood. One more person a little more aware than when she woke up this a.m.

Wednesday, December 5, 2012

Christmas and Autism

I collect Santa Clauses. Tonight they supervised as we finished the tree 
Christmastime can be difficult for those on The Autism Spectrum, especially children who have not yet mastered their coping skills.  The sensory overload can be overwhelming for these children. Bright lights, loud noises, extra people, upset routines, maybe traveling, going to other people's houses where the environment is different, and the rules are more strict and the expectations feel more demanding.....

Christmastime is a big Meltdown just waiting to happen.

I regularly read several other autism blogs.  I have learned so much about what others are dealing with, how many families are going through similar situations that we too live through, as well as how many are living with situations very different from ours.  Either way, I take great comfort in learning about their days and nights, their experiences and advice...it makes the isolation fade away!

2012 Christmas Tree at the Brooks' household
At this time of year I'm grateful Eli is able to handle Christmas festivities ..for the most part anyway.  I have read of children who are unable to handle the lights, the changes in the house caused by decorating, the sounds and smells and other sensory overloads that are all around.  I checked with Eli tonight while  we were decorating the tree, "Eli....does it bother you at all when we change the living room around by putting the tree in it?"

He said, "No, I don't mind."

Thank goodness, right?  It's just never occurred to me to ask him before!!  I'm still learning here and it's amazing how much I still take for granted!  I mean really...most parents never think about having to check with their child if the Christmas lights are too much or the tree might alter the room too much?!  I never thought about how the lights and the decorations and the tree or the Christmas Music might effect him.  Not until I read some other blogs and realized..."Wow!  That might actually be an issue!"

Christmastime always brings a sense of excitement, which means an increase in activity for Eli, which means more potential of getting in trouble at school due to increased disruptive behaviors.  History tells me we'll hear more baby talk out of Eli over the next few weeks, and his emotions are likely to be all over the place.  But this is the life we know...the one we live daily and adapt to as needed.  In our house, Eli is often the one who sets the tone and we adapt to assist him through the rough patches as well as celebrate the happy times.  It's just our "normal".

Last night we started getting the tree up and finally finished it this evening by putting on the ornaments.  The whole process is a big job anyway, but since Ben can't help this year after having back surgery a month ago, it just took the boys and me that long to get it done.

I watched Eli start with enthusiasm, rediscovering ornaments from years past and finding special places for each one.  One year, we made bird nests together, glued in little birds, tiny craft eggs  and a clothespin on the bottom of each to clip to the branches.  I usually spread the bird nests out to strategic places in the tree where they peek out cleverly, as if they came in with the tree... but this year, Eli lined them up all together on one branch and was so excited that he'd made a little Bird Neighborhood. He was quite pleased with his work. It may become a new tradition!
Eli's Bird Neighborhood in our Christmas tree

So far, so good, I was thinking, as we each added more and more ornaments to the tree. He seemed to be having a good time.  Then I noticed Eli flop into my recliner and begin to just watch.  The branches were filling up with our many, many ornaments collected over the years and it was getting difficult to find an empty spot to put another.  He didn't say so, but I suspect he was getting a little anxious about it, feeling a little stress at having to search high and low for an empty branch.

It was simply too much for him.

Big Brother of course chided Little Brother, as brothers do. "Hey!  How come we're doing all the work?  Why are you just sitting there?!"

Eli stated it clearly and definitively...."I'm done."

And that was that.  He'd done all he was able to do and so he stopped!  He knew his limit.  Whether it was consciously or instinctively, I am unsure, but I respected his decision and just let him be.

He watched us for a while, offering conversation and joining in the banter.  Still a part of the family time, but separated enough to be on comfortable ground...in a place where he could deal with it.

Around 7:30 p.m. we'd finally hung the last ornament, and I looked over at my Eli.



Apparently, tree decorating is exhausting.

Tuesday, November 20, 2012

The day I cried in front of sixty-five 5th graders

Eli being goofy at Crafts 2000
On October 25th, I went to Eli's school to speak to the entire 5th grade (approximately 65 kids) about Tourette Syndrome, which is one of Eli's challenges.  It's the part which makes him repeat words, yell out words, and make noises, among other disruptive behaviors. 

I described to the boys and girls in Eli's grade what TS is - and what it isn't.  I explained about tics (not the crawly kind!) and broke it down for them in ways they could understand. I compared tics to the hiccups.  When you get the hiccups, you really can't control what your body is doing.  They can be annoying, and sometimes painful.  Tics can be like that too. 

I also compared tics to an itch on the bottom of your foot.  You can try and try to not scratch the itch, but more often than not, you have to take your shoe off and scratch that itch.  Tics can be like that as well, in as such you can fight it for a while, put it off from happening, but it will keep bugging you and bugging you until you have to "let the tic out".

I talked to this group of 10 and 11 year olds about different kinds of tics...sometimes they can be motions.  Sometimes they can be vocal. People will blink or rock or make movements with their hands, or faces, or other body parts.  They can't really control it...it happens.  Can you imagine how frustrating and embarrassing that can be for the person struggling with TS?  Sometimes people make noises with their mouths or throats or say words repetitively or just yell things out.  Sometimes they can fight the urge, but eventually it will occur.  Eli explained it best to me.  He said, "Sometimes things come out of my mouth before I even know I've done it...and then I can't take it back."  

I was pleased at how smoothly the talk was going.  The kids were great!  The were courteous and politely listening.  I was doing fine!  I wasn't nervous or anything; things were going very well.  

Then I got to the part where I was to tell them that they know someone with Tourette Syndrome.  And as I said Eli's name, my throat went closed.  I felt so much emotion explode in my chest and the tears welled in my eyes. 

Crap.

My brain was screaming, "Nooooo!!!!  Don't you dare cry in front of all these kids!!!!"  How humiliating!  

The school counselor recognized I was struggling and he was kind enough to jump in and start talking for a bit so I could recover.

As I started to talk again though, I was still fighting the emotion, so I apologized and just pushed through it and eventually got back to where I was speaking clearly again. 


I hate doing that!!!!  I was mortified!!

Anyway, there was time for questions at the end, and a few kids did ask questions -- really GOOD questions!  I was really very impressed with their questions, and I could tell they'd really been listening, which made me feel good.  But do you know what most of the kids raised their hands to say? 

Most of the kids raise their hands to tell me about Eli.


Eli snuggling with his big brother, Ash, after Eli had been upset earlier.

They weren't tattling.  Not at all.  Most of the kids wanted to tell me how much they've seen him improve.  "Eli used to do this, but he doesn't do that anymore."  "I think Eli's come a long way since last year."  "I remember back when Eli used to do that, but he's changed a lot in the last few years and I never see him do that anymore."

Those kids will NEVER know how much hope, comfort and encouragement they gave me that day.  I'm so close to our life situation every single day, so it's hard to get a good perspective.  Sometimes I forget just how far Eli has really come!  Hearing these children, most of whom have been in class with Eli at one time or another for the past 7 years, tell me how much improvement they have seen in my child over the years.... that was the most uplifting gift those children could have given me!  They probably don't even realize how much kindness they extended to me that day.  I'm surprised I didn't cry again...but I was actually too busy beaming.  

Not only that, but knowing he is surrounded by 65 kids who will go all through school with him, who are accepting and understanding of him, who are growing up with tolerance as a part of their lives, who are friends with Eli and care about him as he is.... those precious boys and girls who sat there and gave me their attention and then told me nice things about my child.  I wanted to hug each and every one of them.  I was so proud of all of them! 

I saw something posted on Facebook the other day...it said something along the lines of, "Parents have to prepare their child for the world.  But parents of an autistic child have to prepare the world for their child." 

It's my hope that by helping his classmates to understand the reasons behind some of Eli's actions, and explaining some of the ways they can help him, they will take that knowledge with them all through life. Maybe when "scary Middle School" happens in less than two years, some of his former classmates will help explain him to all the new kids he will be joining at the Middle School.  Maybe they'll spread the acceptance, not only for Eli but for others they encounter along their life journeys, promoting understanding and graciousness and compassion. 


Makes me proud that these boys and girls are our future. 






Saturday, November 17, 2012

One man's trash is our boy's treasure

Eli loves to scavenge!  Everywhere we go, he loves to search the floors for items the rest of us would step over or not even see.  Springs, brads, nails, screws and bolts, rubber bands, paperclips, bits of string, plastic tags, pen caps, the occasional penny, colorful or shiny items, and other "cool" items which people drop on the floor and forget....our son spies these items and thinks Christmas has come early!  He collects these items, fills his pockets with them, brings them home to live on his shelf.

I have to watch Eli closely when it comes to his scavenging.  He feels anything on the floor is fair game!  He sometimes has trouble understanding that just because something rolled off a table and fell to the floor, doesn't necessarily mean he can stuff it in his pocket and take it home.  More than once we have had to make him return something he found because it actually belonged to someone.  This is upsetting to him!  It was on the floor, after all!  Why shouldn't it be his?!  

Last Sunday when Ben and I returned home from the hospital in Columbus after Ben's surgery, Eli was really struggling.  The 2 1/2 day separation was difficult on E and his emotions were all over the place that day.  I went in to his room to spend some time with him while he was attempting to calm down.  As I sat there talking with him, I glanced over to his treasure shelf.  I paused as what I was seeing began to register.

".....Eli...? Is that my eyeliner on your shelf?"

"Yeah."

"Why do you have my eyeliner, Eli?"

Shrug.  "I don't know.  It was on the floor."

Aha.

"Well, honey....it must have fallen out of my makeup basket.  May I please have my eyeliner back?"

Pause.  Sigh.  Resignation.

"I guess."

Apparently my eyeliner will be the one treasure that got away.

Thursday, November 15, 2012

So much to write about!

So much has occurred in the last month and a half that I hardly know where to begin.  Our family has faced a lot of trials, but we're still here!  And we keep putting one foot in front of the other.

We have been through med changes with Eli and half the adjustments have been good, half not so good.  We are currently waiting for a response from the Dr. for some direction.  It's been a rough 45 days for Eli and our family alike and I pray we are able to help get him back on track soon.  His anxiety is causing him many struggles, and these days I feel we've lost ground on many of our accomplishments.  Fortunately, I know we will move forward again in time.

Also, as of the beginning of October, we have left our church.  Four men whom we have loved and respected for many, many years put themselves in leadership roles and then behaved in such self-serving ways, putting themselves before God and all others in the congregation, that we can no longer be a part of that church.  The Four have been as selfish and demanding as spoiled children who only want their own way at all costs.  When they couldn't bully and badger hard enough to get their own way, they had a tantrum, treated people in hurtful and cruel ways, made very poor decisions, and declared themselves victorious.  Then they made up stories filled with half-truths and fabrications to justify their actions. Never once did they ask the congregation what was important to them.  Never once did they take anyone else's opinions into consideration. Just four guys on a power trip, and they ripped our church apart.

It has been such a terrible, eye-opening experience and I fully understand now why people walk away from the church and never look back.  It's because of people like this, who make the church a defiled, hypocritical place.  It has left us broken-hearted, but we will find a new church to call home in time.  One that is God-focused, where everyone is welcome and one's journey with and growth in Christ is more important than a petty, self-serving "Boy's Club" mentality and a dress code.  I wonder if I will ever be able to become as involved as I once was?  My trust in "man" has been shaken.  But my Faith has grown ten times stronger, so maybe that was the whole point.

Quite honestly, our family has grown closer to one another and to God through this difficult time.  There are still so many wonderful people still attending that church who we deeply love but had to leave behind, though it doesn't mean I want them gone from my life.  They are still precious to me.  I once again feel the loss of leaving home, but our family knows right from wrong and we cannot stay where this has been allowed to go on.  Our hearts will heal in time, and we continue to move forward.

Then, Ben had back surgery last week and I am grateful to say that he has had less pain after the surgery than he had going into the surgery!  I've not seen him stand so straight and tall for over a year.  It's been a long road leading to this point in our lives, and now he is on the road to recovery.  Finally and at last!  We are blessed to have been at Riverside in Columbus, and I can hands down say it was the best hospital experience we've ever had!  We both thought the place was great! Hopefully within two months he'll be feeling very much improved.

The hard part of Ben's surgery was that the Dr. told us Ben might come home same day, or possibly have to stay the night if he was to leak spinal fluid after the surgery.  The day AFTER the surgery, the Dr.'s partnering Dr. came in to visit and said, "Oh no...generally people having this surgery stay two to three days!" Ben and I had not planned for that, had not budgeted for that, and had not anticipated having to have someone care for our children for that long.  Thankfully my mother was able to stay with the boys until we came home two days later!  Thankfully my father was able to loan us some money to help with surviving the extra motel costs (two extra nights) and having to eat out constantly (me....Ben was getting room service, of course!)  I had brief aggravation until I got my perspective back on track, and everything worked out.

It wasn't so easy on Eli.  As much as he loves Grandma, having mom and dad gone for more than overnight was a severe upset to his "normal routines", and he did not handle the second half of our absence very well.

 So what's my point here?  Point is...life is hard!!  Just when you get to a place and you think everything is going along just the way you want it to, it can all fall apart.  It helps to know who you are and what you stand for, as well as what you won't.  It helps to have a solid foundation of faith for comfort and guidance.  It helps to know how to keep your eyes focused on the right things, to know how to regain proper perspective and keep a positive attitude during the most difficult of times.

God's been working on me steadily for the last year to drive these skills home, and though I'm not great at them yet, I'm far better at them than I was before. I'm learning to survive the trials of life.  I'm learning to hand it all up and relinquish control.  I have learned quite well that I am not in charge, I do not have control and, the most comforting part, I do NOT have to fix it!  All I have to do is trust, and wait.  He will manage the rest.  

As the whirlwind turns....

A month and a half ago I made the very difficult, very painful decision to give up my second, part-time bookkeeping job.  As much as I loved the job, I felt I needed to be home more.  I knew I would miss the work, and especially the added income!  But I had to make a choice as to what my priorities were, and after a lot of prayer, I knew the right decision.  So, with tears, I tenured my resignation.

I spent the month of October training my replacement, who will do a wonderful job, and Friday, November 2nd, was my last night working there.  It was bittersweet as I left for the last time, leaving my keys in an envelope on the office manager's desk, and walking across the parking lot in the dark to my car.  My last Friday night away from home.  I didn't cry.  I felt a good deal of relief in fact...but it was still sad.  I have spent every Monday evening and Friday night, at that job for the past four years.  It felt like leaving home.  But there's excitement in the freedom!  Maybe now I can go to movie on a Friday night!  Maybe now I can attend all those "things" I've had to decline over the past four years ... how many times have I said, "No, I'm sorry...I have to work that night."?  Maybe now I can say, "Sure!  I'd LOVE to go!"

A few posts back I mentioned the decision to start taking better care of myself.  I was going to have to clear the excess out of my life in order to stop running myself into the ground.  I need to be around for a long, long time for Ash and Eli.  I need to be healthy.  I want to know my grandchildren.  I want to still be living an active life even when I'm 85 years old!

So I began the process!  I'm getting rid of the excess.  Excess obligations.  Excess weight (slooow process, but it IS happening!) And I'm promoting more of the positives in my life....more family time, more downtime, more rest.  I NEED to have more exercise, but I haven't gotten there yet!

How about you?  Are there things you need to leave behind?  Things you need to walk away from?  Are there things in your life that are weighing you down and making it so you cannot do the things you want to do, or BE the person you want to be?

As 2012 is winding down, maybe it's time to stop and really look at your life.  What really is your TOP priority?  Is that where you are spending the majority of your time? Your effort? Your money?  Is that what you are working the hardest to nurture?

If you're not, it's time to make a change.  It won't be easy.  It won't be without pain and loss.  But if that one "thing" is really the most important thing, then you should certainly sacrifice the rest to put it first.  Because we really don't know what tomorrow brings.

Thursday, October 18, 2012

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.


Thursday, October 11, 2012

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............

Friday, September 28, 2012

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.  








Friday, September 14, 2012

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!

Wednesday, September 12, 2012

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, September 9, 2012

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....

Monday, August 27, 2012

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.

Monday, August 20, 2012

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.    

Tuesday, August 7, 2012

Take this from me....

Father, You know I have had to learn to be grateful in all things.  Sometimes it takes me a while to get to the point where I remember...but in time I always come back around to James 1:2-3. 

Remember Father?  Last October, when we got Eli's diagnosis?  Remember that car ride home...how numb I was?  How surreal it all felt and looked....how, to this day, the visual memory of the trip through Columbus is all silver and glowing outside the car windows?  What was that? 

And I couldn't think.  All I had was weird abbrevations and words I didn't know rolling around in my head.  "PDD-NOS..... Autism Spectrum Disorder.... Pervasive...it means it effects everything in his life....autism....the most difficult diagnosis I've ever done.....your son is autistic....Eli is autistic...my baby is autistic....."

Remember Lord, how brave I tried to be but how I ended up flailing around with the emotions days later and how the panic moved in and choked me until Ben assured me it was all true, and I could finally accept it?  Remember all the DOUBTS that filled me, but between You and Ben, I found comfort and a newfound purpose in this hand we've been dealt? 

I finally saw the angel You had sent me, Lord, and I was humbled that You had found me worthy to care for this child!  I knew we'd had rough times in the past with Eli, and would have more to come, but I embraced this gift You have given me...the gift of opportunity and privilege to help Eli.  You have trusted me, therefore I am confident in my ability to be all that Eli needs me to be for him.

I've taken great comfort in knowing that Eli often turns to me in the times he needs calmed or comforted.  When no one else can break through the storm of a meltdown that is overwhelming him, I am blessed that I am the one who can reach him, calm him, be the person he latches on to, to pull him out of the emotional hurricane he's lost in, bring him back into reality and safety.  It's not pride Father that I feel in these times.  It's a sense of comfort and strength ... and a sense of healing that comes straight from You, coursing though me and into Eli to rescue him.  You know my heart!  Even during the weary times, you know HOW MUCH I Love this boy!  You know how deeply my emotions run for this child who keeps us all on our toes day in and day out.  He's so smart!  So funny!  So delightful! So unpredictable.

Lord... I might be tempted to ask You to save Eli from the Autism Monster that plagues him, but I would never ask You to take any of this from me.  This is the cross You have asked me to carry, Father and I will take joy in the trial, knowing the testing of my faith will build perserverance. 

But this new thing Lord, I humbly ask you to take this from me.  In fact, I lay down before you, with my face to the floor, tears flowing freely and I plead with you....

These new hormonal shifts Eli is dealing with, the harsh emotions that are taking him over lately, the inability to effectively and appropriately communicate what his needs, his emotions are.... I can deal with most of it.  But not the anger he keeps directing at me. 

I can't handle the hate that glares out of those pale eyes, Father.  I am supposed to be the one who loves him best and most, who comforts and protects him...the one who he runs to when he can't deal with the world around him.  So I cannot possibly be the person he hates like that! The person he won't let near him, won't speak to, the person he holds at a distance and won't let near him.  No no!  I am supposed to be the one he'll let in after he blocks the rest of the world out!  I can't be shut out with the rest of the world!  Who will rescue him then?  Who will comfort him and bring him back from the edge??  That's supposed to be me!

For three days now, he's looked at me with those cold, glaring eyes.  For three days, he's been quick to anger, yelled at me, lashed out verbally, screamed and stormed and raged and despised.  And yes, hated.  He's so mad and he can't tell me why.  He can't figure out for himself why he's feeling the way he's feeling and he flat out shuts down when I try to talk to him about it.  But his eyes seethe anger and his tongue drips with venom, if and when he'll speak to me. 

Tonight was my breaking point.  The tears flowed as my heart broke into five hundred pieces for this child I love more than life itself.  The pain of being on the receiving end of his hatred.... Father, please.... I know how to be the one You chose to protect Eli and love Eli and comfort and rescue and accept and understand and tolerate and explain Eli.... but I cannot be the person he looks at with those eyes filled with hatred when his anger takes him over.  I've seen those eyes before...another person, another time...I survived that.  But I'm definitely not strong enough to endure those eyes from my sweet child. 

Once again I come back around to James, as well as remembering that You did not take the cup from your very own Son...so why should You take this cup from me?  I have no right to even ask this of You.  Father, it is Your Will, not mine.  But I am currently not equipped to deal with the pain of this.  But as always, I will trust You and know You will provide me with what I need.

It's going to be a while before I can take joy in this trial however.

Friday, August 3, 2012

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....

Tuesday, July 24, 2012

Mood Pendulum

Last evening, Ben brought Ash to the church, where I was working my second job.  Ash needed some time to read in a quiet place for his summer reading assignment.  Since the doors were locked, Ash sent me a text quickly to let me know they were pulling in and I walked out to the lobby to let him in.  

As Ash unfolded himself from the front seat, I was aware of the back door on the far side of the car flying open and slamming shut.  Eli came tearing around the back end of the car, with a look of sheer unhappiness on his little freckled face.  I heard Ash say something to him, and Eli yelled, "NO!"  

 Alarmed, I opened the door and said, "Eli!  What's wrong Buddy?"  He threw himself into me, wrapped his little arms tightly around my waist and held on for dear life.

Then the smell hit me.  It was what we kids always called "chicken soup pits".  That onion-y smell of sour armpits, and it was rising up from Eli to smack my nose around.  Stress was just rolling off this distraught child, and I knew right then....he is DEFINITELY going through some hormonal changes!  

I guess that answers that question (see previous post) ....

Apparently Eli's distress started at home when he was asked to help out with a chore.  It was not an unfair request.  Our children have responsibilities at home every week.  There's a list, and each week they are responsible for certain chores on that list.  

To Eli, if that's not his chore for the week, then he shouldn't have to do it.  He can't comprehend the idea that you would do something to help someone out, if it's not your week to do it.    

Since Ben is working this week to replace the bathroom floor, he'd asked Eli to help him out by loading the dishwasher (a chore that Eli really dislikes).  Nothing big, nothing major, and Eli SHOULD have simply done the chore to be helpful.  But instead the emotional upset was more than he could handle.  

Now, here he was, pressed into me, clinging and desperate, because he wanted to stay with me too.  Or... more accurately, he didn't want to go home.  Eli's behavior had been so nasty that Ben had told him staying with me at the church was no longer an option. Now here he was, fighting against that decision without being able articulate what he was going through in an appropriate way.  So he ended up running from the car to me...and then he ran from me.  Down the hallway of the church....and disappeared.  

Oh boy.

Long story short.... after Eli took off down the hall and hid in the church in a last ditch effort to avoid going home, I managed to locate him, talk him down from his approaching meltdown, get him to apologize to daddy and get his mood to swing back from Meltdown Land to Happy Land.  We've been riding the Mood Pendulum from one extreme to another for over a week now.  I know I'm ready for a break from it... I can only imagine what his little heart, as well as his mind, is going through.  I'm sure he's ready for a break too.

When we got Eli home, we sent him to shower and wash really, really well under his arms, and actually USE the deodorant he has!  Hormonal shifts are stinky!

I'm going to have to start finding blogs that deal with Autism and the Teen Years... I thought I would have a few more years before I'd have to be dealing with that.  Looks like I'm going to have to start preparing now.


Monday, July 23, 2012

Another sleepless night

Just a quick update....over the past week our little man has been one big, major, grouchy pants!  Nasty in his facial expressions and tone, quick to anger, super sarcastic, impatient as all get out...it's hard for me to hear my sweet baby talk to me and everyone else like this!

However, I understand these emotions!  I understand what brings them out in me anyway! 

Hormones. 
          Being super tired. 
                             Not feeling well. 
          Being overworked and unappreciated. 
                                                 Trying to keep up with our crazy schedules. 
                                                                            Desperately needing quiet and getting loud chaos instead. 

Oh yeah.  That makes me a big major grouchy pants super quick! 

What I'm trying to figure out now is what brings it all out in Eli.  Could it be he really is going through some hormonal changes?  He is ten years old now after all!


AM I READY TO GO THROUGH PUBERTY WITH HIM?!  UM...NOOOOOO!!!!!


Yesterday evening we went through two near-meltdowns where Mr. Grouchypants ended up hiding under his bed, (yelling at me that he was never coming out), not once, but Two Times! 


And then he couldn't sleep last night. 


I woke up about 2:30 a.m. and, realizing he was still awake, tried to help him out a bit.  Snuggly quilt, change of location, hugs and kissies, but nothing worked. Until! I put Sami in bed with him just after 3 a.m.  Guess what...it worked!  Something to remember.
Finally, sometime between 3-3:30 a.m.
Sami helped Eli to fall asleep


The comfort these two provide for one another is heaven-sent.  Look at how peaceful they both are!  We are so blessed.


So many times I post things with the intent to help others who may be new to this journey.  To say, "Sure!  We know how that goes.  You're not alone!" and to provide answers and encouragement and comfort.  I want to explain it all away and clear up the mystery. 

With these sleepless nights we're suddenly dealing with...sorry...I got nuthin'.  No idea.  Wish I could help you out there.  If YOU figure something out, would you kindly let ME know??  Thanks...

I know the New Moon was last Thursday, but this attitude issue has not been within the normal pattern of what we're used to.  I suppose this whole past week of angry outbursts and two sleepless nights in two weeks, might be the result of the New Moon, but it feels like it's more than that.  We'll be discussing it at the next Dr. K. appointment, but I have to wonder if there will be an easy answer.  I'm betting on No.  After Eli finally was able to drift off next to his best friend, I was still unable to sleep again until after 4 a.m.  Needless to say it's been a looooong day and it's not even over yet. 


I was very surprised, when I posted the cute picture of Sami and her boy on Facebook around 3:20 a.m., by how many people responded to it almost immediately.  What are you doing up, I asked several people.  Turns out they too were unable to sleep.  Hmmmm....coincidence?


Hoping for a peaceful, restful night tonight.  Here's wishing for a gentle thunderstorm at bedtime tonight...waddaya say?  Nothing violent, mind you...just a nice, soft rumbling would be a lullaby for this girl.  Aaaahhhh..... 

Thursday, July 12, 2012

Don't look away

Yesterday I saw a little boy of about 8 or 9 at the grocery store who's face was badly damaged on one side.  I was unable to tell if it was burns, scarring due to an injury or a birth defect, but it affected one whole side of his sweet face, as well as his eye.  The other side of his face seemed untouched.  He was watching me push my cart toward the exit when I noticed him and caught his eye.  I looked into his pretty blue eyes and smiled at him.  At first he quickly looked away, but then he looked back at me and smiled.

I said to him, "How are you today?" and continued to smile at him, holding his gaze.

He said, "I'm good!" and kept smiling at me, looking intently into my face, seemingly surprised that I was looking at him.  In fact, he seemed extremely pleased that I was seeing him, and acknowledging him.

I know a lovely young lady who wears braces on her legs.  She is one of the most beautiful young women I know, both inside and out, yet quite often she experiences people glancing at her but then quickly looking away. If any of those people would bother to hold her gaze, she would dazzle them with her beautiful smile.  If anyone would bother to speak to her, they would be charmed by her lovely personality.  But most people simply look away.

Why is it our first instinct to look away when we see someone who appears physically different than we are? I think I know.  Think back to when you were a kid and you would see someone with a physical disability.  What was the first thing your parents always said?

"Don't stare!  It's rude"

So we learned to look away from anyone who appeared different than we are...anyone with a physical disability, or scars, or a wine stain birthmark covering someone's face, or if they use a wheelchair or braces....after all, we don't want to be rude, do we?!

But I wonder...how must it make the person feel, when we glance and look away?  What sort of message does that send to that person?

I don't see you.  
You don't exist.  
I can't look at you.

Is that not, in fact, being rude??

I think we need to retrain ourselves and the next generation. Now when we see someone with a physical difference or who is differently-abled than we are, instead of looking away, we need to teach our children and ourselves a new motto.
"When you look, make sure you smile." 




Tuesday, July 10, 2012

No power

I dedicate this post to my Uncle Ken, who gives so much of himself.

On Friday, June 29th, we had a magnificent storm system move through our area, leaving much damage and hundreds of thousands of homes and businesses in Ohio without electricity. That was just in Ohio.  I can't speak for the other states effected. 

I was in absolute awe of the power this storm demonstrated.  It made me remember once again just how small and insignificant I am. Shortly after the violence of the storm had passed, I drove into town to go work at my second job at our church. There were trees and limbs all across the road and people were, for once, driving very cautiously, but clogging the roadways as they drove around gawking at the devastation.

As I pulled in to the parking lot , the first thing I noticed was the fallen tree behind the church's Youth House, and the garage smashed beneath it. There were were shingles from the Youth House everywhere - it seemed as if the entire roof was laying throughout the parking lot and side yard! Then I noticed our church was missing its steeple.  I drove to the far end of the parking lot and spotted it, still up on the roof, hanging by its lightning rod cord.  I called to report the problems to our minister.

I was unable to work due to no power at the church, so after helping pick up the trash cans and the gas grill out back, which looked as if it had been picked up and slammed back to the ground with great force, and some other items, I headed back home.

The first evening was not all that bad.  Our frame of mind on that night was So the power was out...Big deal.  It was an inconvenience but the storm had cooled things off and the windows were open with a nice breeze blowing, plenty of food in the fridge as I'd just been to the grocery.  We had our Kindles and phones and I suppose in our minds the power would be back on within a few hours.

We were unaware at that point of the extent of damage throughout the state.  We were unaware of how long this would last.

The next day was Saturday, June 30.  Got up early because there were birds singing outside my window.  I remember thinking how nice it was to wake to such a pleasant sound and what a shame that we usually miss that experience because our house is always closed up, to keep the a/c in.  I felt pretty good that morning, so I got up and went in search of ice.  In town, it was crazy and chaotic.  People everywhere, ice no where.  I found six bags only left at Kroger and loaded up 4 of them into my cart.  A man walked up behind me, and I told him there were two left, but I would split it evenly with him if he wanted, and give him a third bag.  He thanked me but said 2 was all he needed.  I saw one of my favorite faculty members in the parking lot, leaving empty-handed and offered him one of my bags of ice, but he too thanked me and said he would look elsewhere.  I headed home to unload the as much as I could from the fridge into coolers.

After that was accomplished, I tried to go work the second job again.  Nope.  Still no power.  Sigh. It had been a challenge to get to the church because, in the time since I'd returned home from getting ice to when I was returning to town to work, a pole had fallen, dropping a bunch of wires (phone? cable?) across the road and there were wires going everywhere about a mile before the church.  There was a woman and an elderly man on site helping to slow and direct traffic, and I'd had to drive clear off the left side of the road to sneak under the lines.  Since I had to travel back that way to get home again I hung around at the church for a while, did some picking up of the debris laying in the lot and yard and gave the crews time to clear the road.

We messed up big time Saturday....we left the house opened up during the heat of the day.  And it was miserable hot.  That was a dumb thing to do because all that heat got inside and there was no way to move it around or get it out come nightfall.  Lessons learned.  In the afternoon Saturday, I received word the church had power back, so I went in there and did what I needed to do and sucked in as much air conditioning as I could.  Felt great!  I was really hoping there would be power at home when I got back home, but by now we were beginning to hear about the extent of the damage, the widespread power outages that stretched from Indiana to West Virginia... and the estimation that it would be 5-7 days before power would be restored.

I slept horribly Saturday night...all that heat in the house, absolutely no breeze coming through the windows all night... I tossed and turned and woke up drenched in sweat I can't tell you how many times.  It was the worst night.

I woke up early again Sunday morning due to the birds making a racket outside my window.  You can see how much my frame of mind had deteriorated at this point. It was humid and I was soaking wet.  I felt exhausted, frustrated, gross and cranky.  Ben went out very early to try to find some ice.  I spent the first hour throwing out over $300 worth of food from the fridge and freezer that we just couldn't save.  The frustration of the waste and the expense had taken a toll on me, but I actually felt a little better after I'd purged it all from the house.  The stress of trying to save it was gone.  It was time to move on.

We were smarter Sunday.  The house had cooled off a bit during the night, so as the temperatures began to rise again, we shut the house all up, closed the windows and the blinds and kept it dark.  It helped.  It was still stifling hot in the house, but remained a consistent 10 degrees cooler than the temperature outside.


We were pretty much out of towels at our house because we had to keep mopping up melted ice all the time. So I packed the kids up and a load of towels and trucked in to my mom and dad's house to shower and do laundry.  My folks had gotten their power back sometime on Saturday.  We all showered and mom said just to leave the towels, she'd do them later.  While we were there my Uncle Ken texted me and was on the prowl for a generator for us over in West Virginia, where he lives.  He was going to get one for us and we would drive down to Marietta and meet him to pick it up.  Ken spent his entire Sunday trying to locate one for us.  Bless the man's heart for his efforts.  


It turned in to a huge mess for him, trying to track one down, and by the time we met up with him, it was after nine p.m. and it was storming so badly in Marietta when we met up that we had to sit and wait it out for a bit before we could even get out of our vehicles to transfer the 200 lb box from his car to ours.  We were even under a covered loading dock, but the wind and rain were intense.  70 mph winds were shooting shopping carts from the nearby Walmart across the parking lot like projectiles, crashing into vehicles and setting off car alarms.  I think Eli might have been fearful.  I'd sort of forgotten about him sitting silently in the back seat as we tried to navigate the parking lot to a safer location, while carts shot out in front of us.  All of a sudden, I heard his little voice say, "...I love you guys...."  I looked back at him and he was sort of pale and his eyes were big behind his glasses.  Bless his heart!!!!  
Under the loading dock at Lowes in Marietta.
It wasn't actually supposed to be dark yet.


By the time we got home Sunday night it was after 11 p.m.  I went straight to bed.  It was too late to set up the generator, and besides we didn't have gas for it anyway at that point...we had to have a 5 gallon gas can and had been unable to locate one anywhere.  


During Sunday afternoon we'd lost our land line phone.  One moment it was working.  The next moment, it wasn't.  It was just one more complication.  I'd planned to have my mom phone me to get me up the next morning so I could go in to their house to shower in order to go to work.  Instead I borrowed a battery operated alarm clock from her and go up at 5:30 a.m. and trucked in to town.
I was trying to capture how hard it was raining,
but it just doesn't do it justice.


Over a thousand crews from other power companies in other states (AL and GA included!) had traveled during the weekend into Ohio to begin helping our local crews with the overwhelming task of getting lines cleared and repaired and power restored.  A "home base" had been set up at the Fairgrounds, complete with lighting, Port-a-potties, food vendors, and later in the week, a station with computers so the crews could Skype with their families back home.  


As I traveled through the dark and fog to my parents house around 5:40 a.m. Monday morning, July 2nd, I drove past the Fairgrounds to see 30-40 huge power company trucks back-lit with flood lights, causing the thick fog to glow as it swirled around these behemoth trucks.  It was an awesome sight!  It filled me with hope!  The cavalry had arrived and maybe this ordeal would soon be over!


Ben and Ash worked during Monday morning to obtain the 5 gal gas can, fill it with gas and then set up the generator.  They had just set everything up and Ben had the electric cord to the refrigerator in his hand, preparing to plug it in to the gennie, when all of a sudden the microwave beeped and the whir of electric things in our home began to buzz as power was restored to us.  Ben stood gaping with the cord still in his hand, and Ash yelled, "YOU'RE KIDDIN' ME!!!"  Then came the laughter of relief.  Yay!  Electric for us!


But.... we were one of the fortunate few, and I almost felt guilty that we had power back.  Several of our friends spent the entire week without electricity.  It was the hottest week we've seen this entire summer thus far, with temps in the high 90's into the 100s most days.  


I think about our three inconvenient days and about how cranky I got and feel a sense of shame for being such a whiner baby.  Of course, we did three days with no assistance of a generator.  Still, it was nothing compared to 7 or 8 days....or more...that others have had to endure.  Yes, we experienced some devastating expense.  Financially it completely wiped me out, and that was very stressful and frustrating.  Yes, we were inconvenienced and hot.  But, as I write this, there are still some folks without power ... this is day 11....and the electric companies are announcing today that they really hope to be able to be able to restore power to them no later than tomorrow night. I just ache for these folks!


 You know what I found fascinating was that while Ben and Ash and I were experiencing aggravation about our situation, the one who handled it best was Eli.  Sure he missed playing video games for a few days, but somehow Eli just accepted that "it was what it was" and got out his toys.  He set up a magnificent battle and worked for hours sorting the guys, setting up the guys, picking out the most perfectly posed guys and creating minutely detailed scenes with exquisite care.  He even got Ash involved and they worked together to help pass the time.

Mind you, Eli didn't have the worry of the loss of all that food.  He didn't have the worry of how to foot the bill for all stuff we were having to buy and replace and survive on, or any of the stressful stuff we adults were having to deal with.  But... he could have made it so much worse by being difficult or having a meltdown about playing his video games, or in so many other ways.  But he didn't.  No meltdown.  No whining.  He really didn't say much at all, in fact.  He just quietly entertained himself the whole three days by playing.  


I was so proud of him!  
       
I learned something about myself though...I will take an extended power outage in the winter over one in the summer ANYTIME!  At least you can put your food outside to keep it cold, and you can always put on more clothes and wrap up in blankets to keep warm.  I handled the 5 days we were out in the winter of 2009, after a massive ice storm knocked out power all over our area, so much  better than I handled this one. SO much better! We closed off rooms in the house to conserve heat and took turns sitting up round the clock with the kerosene heater.  We kept our food on the deck in the snow and cold, and slept in pairs for warmth. It was cozy and kind of fun!

This outage, on the other hand, was hot and sticky and uncomfortable and wasteful and tempers were flaring and food was rotting and bodies were stinking.  Just a whole different experience. And I'm so grateful for God taking time to make me aware of the many, many daily blessings I have all around me...and I have been prayerful in giving praise and thanks for these things!

I'm beyond grateful to my Uncle Ken who spent so much effort on getting us the generator....clearly it was the magic catalyst in getting our actual power restored!!  We will be paying him back a little each month until it's paid off and at least we'll be able to save our food in the future. And run a fan!  It will definitely make a huge difference the next time around!  Thanks so much, Ken!