About Me

My Photo
Ohio, United States
I'm the woman who is thoroughly defined by the following quote: "Thoughts disentangle themselves when they pass through your fingertips." Dawson Trotman. This blog is just one family's journey. We're not experts. We don't have medical degrees. But I've found more comfort and knowledge and guidance from others who are walking the walk and living the life with "Autism" than anyone else...and I hope my blog can be that source of comfort for someone else.

Wednesday, January 9, 2013

CHANGING ELI'S WORLD BLOG SITE

Good morning!

I have had so many people tell me over the last year that they cannot comment on  blog posts for Eli's World or subscribe to the blog because blogger.com doesn't allow those options unless the person creates their own blog account.  Not many people want to do that!  So I have decided to change blogging sites and move the Eli's World to Wordpress, another free blogging site.  I believe you will be able to leave comments and (hopefully) subscribe to the blog if you wish, so that new posts will be emailed directly to you.

The new URL is https://elisworldpddnos.wordpress.com/

Check it out!!

This blog will remain active - I'm not taking the blog down.  Feel free to continue to utilize the past year's posts if you find them helpful.  However, any NEW posts will be created at the new site.

As always, thanks for all the support and love!

Kim

Friday, January 4, 2013

Saying Goodbye

My father passed away 11 days before Christmas.  It was unexpected only in that, while we knew Dad's health was bad and that he really wasn't doing very well at all, we just didn't expect him to be suddenly gone from us.  My sister was blessed with one last time to see him.  She lives in that general area and had taken the opportunity to see him at the hospital he'd been quickly transported to, not at all realizing it would be her final goodbye when she left.  Dad was in a hospital an hour and a half away from where my parents and I both live.  Mom and I hadn't made it there yet.  We did not have a chance to say goodbye.  And still have not since my mother, for reasons important to her, has delayed the Memorial Service until March.

I am left with this numbing emptiness and no closure...a feeling that fills my entire being.  I have no choice but to tamp down the grief and keep moving forward through each day as if nothing is wrong, nothing is lost.  Sometimes it wells up from the very center of my core and washes over me, overwhelming me to the point that I can't even breathe.  The tears will then flow.  Sometimes I am angry.  But then I squash it all down again and I keep being wife...mother...daughter....and whatever else I am supposed to be.  It's what I do, right? It's expected.  After all, I can't just stop.  So I put one foot in front of the other and do what I'm supposed to.

Yesterday, what I was "supposed to do" was help Eli clean out his room.  I have a few days left of Christmas vacation and I'm trying to make them count.  Eli has not been shaken by my father's death.  They were not close.  Dad's health has been bad for some time and while he cherished his grandsons from afar, he was unable to interact with them in ways that build bonds.  It's unfortunate, but it is what it is.

At the end of yesterday afternoon, we took six or seven bags of donation items to the New To You store and dropped them off.  The store was closed, but as we were pulling away, we could see a couple of the employees carrying the bags into the building.

At bedtime we realized that Monkey was missing.

As a reminder, Monkey is Eli's constant companion.  His comfort.  His confidence.  His security.  Eli clings to Monkey as a small child would cling to a blanket. Monkey eases Eli in a way nothing else can.

Eli last remembers Monkey last lying on his floor in the same area he was bagging up old stuffed animals to be donated.  My heart became fearful at that point, but the entire family tore the house apart last night, searching desperately in every possible nook and cranny.  Nothing.  Eli found a substitute monkey to hold while sleeping...but it just wasn't the same.  His eyes held grief.  Worry.  I was surprised he was able to sleep at all.

This morning I am calling every half hour, trying to reach New To You to see, if by some chance they have Monkey. I have tried to prepare Eli....we are hoping for the best, but preparing for the worst.

This morning Eli got up before eight and the first thing out of his mouth was, "Did you call?!"  I explained it was too early, so he curled up in my lap and lay there, silently grieving.  I cried the tears he could not. The grief he could not feel for my father was shuddering through his small frame as he lay in my arms, experiencing a sense of loss that he'd never experienced before.  So I held him close and cried for him.

I am hopeful we can bring Monkey home.  However, I am doubtful. Monkey had long ago lost any substance to his little brown body.  All the "beans" that once filled him have leaked away over the years.  Perfect for a small hand seeking a soft comfort to hold on to.  But even if the employees came across Monkey while they were going through the bags we dropped off...he would have no retail value in his condition and most likely would have been tossed into a dumpster.  Our only hope is that they saved the bags until today.

Eli is sad, but I'm pleased that he seems to be handling himself quite well so far.  Pleased and surprised.  He is extra hyper today, moving constantly, unable to keep still, rocking, moving his feet and legs constantly.  It's the anxiety.  Still, he seems emotionally calm so far.  It might be the fact that there's still hope hanging in the air.  I worry about the potential meltdown that will relieve the build up of emotion sometime later, should we not be able to locate Monkey.  I will deal with that if it should come, with compassion and understanding. For I know firsthand how that feels.

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...........

video



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.