Oh the daily challenges .... but watch how it works out

Guess how many times Sami had Ben and me up last night... three.  Three times!!  She's like having a newborn in the house! (Okay, okay, I guess essentially that's about accurate...) 

It's not every night.  Some nights she actually sleeps the whole night!  Usually she gets me up at least once to go out.  But last night it was THREE TIMES!   

The first time - 2:45 a.m. - she really needed to go out and pee.  Okay. No problem. 

Second time -- 3:45 a.m. - I told Ben there was no way she needed to go out again, she was just out an hour ago!  But he did get up with her to give her a chance...wouldn't you know it, the ol' faker didn't have to go out, but when she came back inside she started prancing around like she thought she was going to get breakfast.  Ben set her straight.  No breakfast at 3:45 a.m.  Sorry.

By the time the alarm was going off at 5:15 a.m. she was half hysterical.  I was ticked.  Usually I get to hit snooze for a few minutes, but not this morning!  Oh no!  Not unless I wanted this entire side of the county awakened because Yappy McGee was apparently really hungry.  I took her out and all she did was chew on the leash.  I fed her.  Then Ben got up with her so I could have a whole 10 minutes more of sleep before heading off to work. 

Goofy dog.

Here's the really amazing part.  I'm not even all that upset with her, and you wanna know why?  Look how she earns her keep!



Sami seemed to sense Eli's upset and calmed
herself down, and then worked to calm Eli down too!

Last night the older boy in the house was apparently having a massive hormone avalanche and was a major cranky-pants!  We're within six days of the next full moon, so Eli's feelings were easily hurt.  It might have escalated into a meltdown, but .... Sami came to the rescue! 

Can she sense Eli's upset?  Can she smell his sadness?  Can she tell when he's on the verge of losing it?  I have no idea, but ten minutes before these pictures were taken she was completely riled up, running all over the living room, jumping on Eli, trying to bite his clothing, jumping on his head, etc, because she was wanting to play.  She would NOT calm down, and finally I had Eli get up and start getting ready for bed, because I was actually afraid he was going to end up hurt. 

After he got his feelings hurt, he was all upset and looking like he was either going to cry or have an outburst of anger in retaliation, Sami instantly calmed down, wrapped her paws around him and began licking him.  She licked his face, his ear, she nuzzled him and licked him some more.  Within moments, he was calmed and smiling.  He loves her so much! 

Chalk one up for the puppy!  That's one more meltdown averted!



Sami licking Eli's face and ear to comfort him

It does get me thinking however.  If the older boy, who is typically developing in every way, is prone to such hormonal upheavals and upsets.... what does that mean for Eli when he's that age?  I'd love to hear more from other parents with TEENS on the spectrum or be directed to resources out there that will aid with this.  Restraining an hysterical teenager is a whole different issue than restraining an hysterical little one.  Eli's ten now...he's hit double digits.  He's still not very big at this point, and I could probably hold on to him if I really had to...at some risk to myself, however.  Our older son is already nearly 6 feet tall.  If Eli is that big in another 5 years, what exactly will I do then?

Hopefully by that time he will have more coping strategies under his belt, and hopefully by then Sami will be a full grown dog who is still a great help to Eli in allowing him to relax.   Sometimes when I start thinking about the future and all the things we MIGHT face, I get a little tense and think maybe Sami needs to come lick my face and ears!  But then I remember just Who it is we are leaning on, and I hand it all up to Him.  I will trust and take one day at a time.

 



Happy Birthday Eli!

Before I share this past "birthday week" with you, I want to give sincere thanks to all of you who have voted for the Blog on Babble.com's Top 30 Autism Blogs for Parents 2012.  I really and truly never thought our blog would actually make it into the Top 30, but the last I knew, it was holding at #15.  I was honored by my co-worker Steve's nomination description and just the outpouring of support and positive feedback.  Thank you so much for the overwhelming love!

Sami really liked Conner.  

Today Eli turns 10.  Ten years old.  A decade.  We have stretched Eli's birthday out over the past week. This weekend has been filled with rehearsals and our spring performance at church.  So, knowing this ahead, we had planned and for the most part celebrated Eli's birthday last weekend.

Eli's buddy Conner came home with E after school last Friday to stay the night and "party" with us.  Sami really liked Conner.  While he laid on the floor watching tv, she laid on him.  Conner brought Eli a really nice gift bag full of cool little gifts, including a monkey and some "guys" and a few other items.  It was a nice surprise!

We took off for Columbus to go to Dave & Busters for the evening.  If you don't know what Dave & Busters is, it's a combination restaurant/bar/arcade.  It's sort of like an adult version of Chuck E. Cheese, but far classier.  Even so, kids are welcome, as long as they are supervised.

What was left of multiple bugs after we drove
through a swarm of mystery bugs.  Eeeew!

On the way to Columbus we hit heavy traffic.  Thankfully it was mostly on the other side of the highway.  Apparently at 5 p.m. on Friday, everyone LEAVES Columbus and comes down to where we live.

We also hit a swarm of bugs...or more accurately, they hit us.  I don't know what kind of bugs they were - Ash and Ben were both guessing they may have been June-bugs - but there we were driving along and all of a sudden they were just smashing into the windshield and they were everywhere!!  And then they were gone.  We were left with bug guts slime all over our windshield!  That thrilled the boys in the backseat of course.  Nothing like a bunch of bug guts to get the giggles going!

Conner was cracking me up, reading the
drink menu like it was a good book

Dave and Busters in Hilliard is REALLY NICE!  I'd been to the one at Polaris about a month before for my sister's Bachelorette Party and we had a really nice time at that one as well.  The one in Hilliard is much larger just "fancy", but it's still fun and laid back.  I felt really relaxed there, and even though there were a lot of people at the place, it didn't have the feel of being cramped or packed.  There's just a lot of space for everyone to move around in.

I asked Eli and Conner for goofy faces for a picture
and this is what we got

We started in the restaurant and had a really good meal.  Conner and Eli were excited and silly, but not in a bad way.  They were just having a good time, and everyone was feeling pretty happy. Ben and I got the same thing for dinner...wish I could think of what it was called, but it had chicken, shrimp and steak on skewers that had been grilled and had different dipping sauces...OH YUM!  It came with a spicy rice and it was just enough food, but not too much food.  I felt really good about what I ate that night!  It was healthier than what I normally would eat in a restaurant, and definitely didn't stuff myself.

Ben's dessert - a Ginormous Brownie Sundae

Ash, Conner and Eli ate quickly and took off for the games.  Ben and I sat there a while longer, enjoyed our meal, and even got dessert since we weren't bloated from our meal.  It was nice to just sit at the table together for a little while and know they boys were safe and having a good time.

When I'd played at the other Dave & Busters in March, I'd fallen in love with the Plinko Game there.  I found the same game at this D&B but it was called High Casino.  Since I'm not much for video games I plopped down at the High Casino "game" and said, "Have fun!  This is where I'll be!"  I say "game" because there's not really much to it.  You drop in your token, the two-tiered trays move back and forth.  You try to drop your token so when it moves forward again it pushes tokens on the top tray off onto the bottom tray, in order for the tokens on the bottom tray to move and push the tokens at the very front over the edge so they drop.  When they drop, YOU GET TICKETS.

Lame, right?  ENTIRELY!  And soooooo addictive!

True to my word, I spent the entire evening at that one game.  I start my 12 step program next week to deal with the addiction.  Just kidding, but seriously...it's pathetic how the game just sucks you in!  People all evening came and went at the seats next to me and every single one of those people would be mumbling..."This is soooo stupid...why can't I stop playing it..."

THIS is the game we all kept playing.

I think I know.  You get tons and tons of tickets playing it!  And you get instant gratification every time a coin falls or moves other coins!  You wait and watch and hope this time...this time...the coins at the edge will drop, and even if they don't, they moved just a little, so you drop more tokens in because this time...this time....they might fall!

The funny part was, as I sat there, eventually the whole family plus
Conner all moved into the seats around me, and our party pretty much took up the entire bank of High Casino machines.  And we weren't interested in moving or sharing, as we sat there mumbling to ourselves, "This is soooo lame...why can't I stop playing it?!"

We all spent a considerable amount of time...and money....on these machines and none of us regret a moment of it!  It was a total blast!  We all had tickets pooling and tangling around our feet.  It was a really fun evening.

Trying to figure out what to spend the tickets on was more challenging.  Since I plan on going back again at some point, I didn't feel it necessary to cash out all of my points.  I got some Nerds and a couple plastic lidded glasses with built in straws to tote water around in.

Eli and some of the many, many
tickets he won on the games

The boys were downright goofy on the way home.  We were all so tired, that someone would just say one word, and the whole car would erupt in laughter.  There were a couple of times I had to ask them to stop being so wacky simply because I was laughing so hard I couldn't see the road.  We had a lot of fun!

Two peas in a pod, these two are.

That Saturday morning, I got up early to take the dog to the vet and Conner and Eli got up early to play video games, since they hadn't had a chance to the evening before.

Conner won a lot of tickets
on the High Casino Game

On to this weekend, Friday night we had dress rehearsal for the performance so we didn't do much then.

Saturday Ben, Eli and I ate at Donatos Pizza for lunch while Ash was on a hike with the Youth Group.  Then we went to WalMart so Eli could spend the birthday money he'd received and he bought himself a new Batman video game which he is REALLY excited about.

Saturday night we had movie night, set up the projector and watched the movie Big, with Tom Hanks and ate popcorn.  It was fun!  That's a great movie...I'd forgotten how fun it is.

Then today (Sunday), Eli's actual birthday, most of it was spent at church, in the a.m. for service and then this evening for the performance and the dessert social which followed.  Eli spent a great deal of time playing with his friend Fox, so it was fun for him.  Eli wasn't all that interested in watching the performance....it's too hard for him to sit still and follow what's going on, especially in that big crowd of people who he didn't know.

I think Fox had seen the performance so many times from being at rehearsals that he didn't mind having the distraction either!  They played up in the balcony while we were singing and dancing below, then the two of them ate lots of dessert and went back outside to play some more.  It was a beautiful evening and I was glad Eli had a chance to be out in it.  Sometimes it's hard to get him out of the house!

Overall, I think Eli's had a great birthday week.  We have a cake for him at home.  He picked out colorful cupcakes to take to the dessert social instead of taking anything to school.  That might be best, so we don't sugar up the whole class.

I think of how much has taken place for him ... for all of us....in the past ten years.  I wonder if the next decade will hold AS MANY changes.

Making the shift over to REAL food

I signed on some time ago to follow the 100 Days of Real Food website -- have you heard of it?

Check it out:   http://www.100daysofrealfood.com/

You can follow it on Facebook. That's pretty much ALL I have done...I've followed it.  I've read the posts, checked out the pictures, looked at the recipes, ... heck, I've even commented on them and said, "Wow, that's sounds pretty tasty". 

Then I go home and make a bunch of processed food for supper, or (way too often) show up with takeout food.

Let's just get this out of the way now.... I'm fat.  I've been fat for sometime now.  Every year I try and try and try to lose it.  Every year I fail and fail and get fatter and fatter and fatter.  I tried for months to lose weight for my sister's wedding that took place in mid-March this year (there's a blog post about that!) and when the pictures came out, I crawled under the bed for a few days to lick my wounds and come to terms with the fact that....I have to make some changes.  Let's just say....a bridge troll would have looked better.  Don't get me wrong...my dress was beautiful!  My hair was beautiful!  It was the pig sporting the dress and hair that was the problem.  That pig was me.

That might have been the main catalyst that got me ready to start moving away from processed foods. 

Also, I've read several things over the past few months about kids who are on the spectrum being affected by processed foods, preservatives, dyes and all that other "pretend" stuff that is in so much of American foods these days.  One of my favorite comments in one of the many articles I read said something to the effect of....

Read the list of ingredients on the the "thing" you're eating. 

Do you know what the majority of those things are? 

NEITHER DOES YOUR BODY!

Your body doesn't have the slightest inkling as to what to DO with that stuff you're eating.  It's not food.  A lot of times your body just stores it.  I don't actually know what tht stuff is, but at what point did someone decide to start putting this "stuff" into "food shapes", and then we decided to actually eat it?  WHAT WERE WE THINKING?!

Is there any wonder there's an epidemic of obesity these days?  How about the epidemic of cancer?  I was looking at our church's prayer list a couple of Sundays back... I would say 90% of the prayer requests on it were cancer related.  I live in a fairly small town, folks.  That's just...horrifying!

I admit I'm concerned about my health.  I'm not 30 anymore, and I come from a long line of diabetics.  When you have that gene-pool, being a fat-girl is NOT a good decision. 

The fact that I'm tired also has motivated me to start eating healthier.  I'm tired, people.  BONE tired.  I mean....I'm sooooo tired that some mornings when the alarm goes off I actually cry a little because I know I have to get up and start it all over again...and I just did it.

I'm definitely not 30 anymore.

So, weight, health and the fact that Eli would eat a breaded chicken patty for every single meal if I would let him (cut up, with ketchup on the side)..... something just changed in my head and I suddenly found myself all about serving and eating only REAL food!

Let's be real now...it's not all going to change overnight.  I still love American cheese on my scrambled eggs or omelette in the a.m.  It's going to take some time to make the complete change over.  Eventually I'd love to be able to locate and switch over to all things organic and REAL. 

Baby steps!  And don't give up!

I purchased the cutest little Ziploc trays to pack REAL food into for lunch and sometimes dinner (when I'm working) and I've done so well this week! 

But I've been making things from scratch, I've been cooking up meals with fresh veggies and brown rice and I made chicken salad and hard boiled eggs this week to have on hand for lunches and dinners.

The scale is slow to sing my praises...but the mirror is having a friendlier disposition this week!  AND my pants are so loose I almost embarrassed myself during choir practice the other night - we were practicing a dance number and I suddenly realized my pants felt like they were going to fall right off my hips!  Horror and joy all at once!  I'm going to have to dig out those one-size smaller jeans I bought 3 months ago and then never managed to get into.



Shrimp Stir Fry with brown rice, shrimp, egg, shredded

carrot, bean sprouts, yellow squash and broccoli



A couple of big pluses to eating all real food --I'm not all that hungry.  Apparently, when you eat real food instead of pretend food, your body is happy and satisfied and doesn't crave more.  Imagine that.  AND, since I started this...I haven't been wanting to eat at night.  I mean...not at all!  This is my most difficult time of day!  Always!  And now...I eat dinner and I seriously don't want anything else for the rest of the night.  Our older son Ash has not been hungry either, and that's a full-blown miracle.



There are four of us in our little family and exactly three of us are enjoying this change in eating.  Guess who the holdout is....well, of course it's Eli! 

I've seen more turned up noses and heard more, "Uggggh! I don't like that!" (before he's even tasted it, of course) this week than I care to think about.  This is going to take some time and a lot of patience.  But the new dinner rule is you have to take at least one bite of everything.  I want to slowly start weaning him away from the artificial stuff and getting him used to eating the real food.  I'm excited to see how much better he will do, or if it will help all that much at all.  I'm concerned he'll starve to death.  Generally he's been eating ONE BITE of everything, following the rule, and then saying he's done.  I'm going about it as if he was a pet turning up their nose at their food...



Check out my new Ziploc Trays!



If he gets hungry enough, he'll eat it!

The real food experience FEELS great, but it IS taking a lot of extra effort.  Cooking things ahead of time, making sure you have things prepared and on hand, spending a good deal of time getting lunch and breakfast, and sometimes dinner, for the next day all prepped and packed into the cute Ziploc trays (aren't they adorable?!)

Wish us luck!  And listen...I'm not expect any crash diet results any time soon, but let me assure you the weight is slowly, but surely coming off.  Everytime I check I'm down .2 lbs (notice that's POINT two), but if I keep that up, it'll add up over time.  Just the way I gained it!

If anyone has other REAL FOOD websites, books or other resources that they care to share, and even REAL FOOD RECIPES, I'd love the suggestions and the additional information!   Share Share!!!!!

Fears for my son

Many people are aware of this video that has been circulating this week of the father talking about how they were able catch his autistic son's teacher and aide bullying the boy. 

http://www.youtube.com/watch?v=tfkscHt96R0

I include it here to help increase awareness of this situation.  But I will be perfectly honest....I have not watched it. 

I cannot watch it. 

When I read the title of the video -- Teacher/Bully: How my Son was Humiliated and Tormented by as his Teacher and Aide -- I felt nauseous.  I felt literally SICK. 

What if this was MY child?!

It's hard enough sending your child out into the world alone.  To a babysitter.  To daycare. To school. Eventually you adjust.  There's a level of trust that is established with another adult who spends the day with your child.  After the first day apart, and your little sweetie comes home all happy and excited...and safe...you relax a bit.  The anxiety goes out of the situation, and you say, "Okay.  He's alright!  No worries! She's happy!  Everything will be okay!"  Doesn't every parent go through that when they send their child out into the world when they can't be there to protect him?

And that's just with our typically developing children.

Throw into the mix a child with....issues.  Now we've got a whole new ballgame. 

Unless you have lived it, you cannot possibly imagine the constant anxiety a parent goes through when they have that child who can't behave, can't keep it together, who causes problems every day at the location you have left him, who stresses out the adult they are with, and you can't fix it for either of them.  The sense of failure.  The sense of guilt. 

You can't fathom the feeling in the pit of this parent's stomach when you ask for a report at the end of that day, hoping against hope, that maybe today you'll hear, "He did really well!" but knowing you're more than likely goign to hear about how he couldn't keep his hands to himself, can't behave appropriately, was defiant, uncooperative, wouldn't settle down, threw things, hit people, got really angry and screamed and cried, wouldn't play with the other children, would participate in the activities...again.

This is the child you love!  The one who leaves you up at night worrying about what you're doing wrong.  The one you spend years trying to figure out how to help.  The one you'd give anything to see succeed! 

And then you get the referral and start the long, long, ... looooong process of evaluations and mounds of paperwork and missed days of work, miles and miles and miles of driving (unless you're lucky enough to live really close to all the Drs who can help you.... we weren't that lucky), and the endless line of doctors...the neurologists and the psychologists and the specialists and ....

BUT WAIT...I'm GRATEFUL for all the time and effort and energy we've devoted!  If you're just starting this process, DON'T STOP!!!  It IS worth it!  Look how far our efforts have brought Eli!  There was a time I thought he'd be with us forever...he'd never have a life of his own that he'd be able to managed by himself.  Now... look at him!  How smart he is!  How well he does on his meds.  Sure he has difficult days still.  Sure he still meets challenges at times, but he's going to be fine.

And then I saw the headline. 

Teacher/Bully: How my Son was Humiliated and Tormented by as his Teacher and Aide

I instantly felt sick.  I instantly thought, "Oh my gosh, could this happen to my Eli?"  Would some future person treat him this badly?  Would a trusted adult do this to my sweet boy and hurt him in this way?  

How do I keep him safe?  These are the thoughts that keep me up on a night like tonight.

Here's what I have determined.

Here's what I know I can do: 

I can pray and keep faith that God will never take Eli through any challenge greater than he can handle.  He's proven to me over and over than He's with us at all times, and though out journey has had its ups and downs, we're handling it!  We're doing okay here!

I can remain involved in his schooling, developing good relationships with the teachers, the principal, the school psychologist, and other staff, so they KNOW my son, they KNOW how sweet a child he is, they KNOW the challenges he faces daily and we make sure we identify and accommodate for those challenges. 

And I can write. 

I can write this blog and I can connect people to Eli who have never even met him, but who will appreciate him for who he is;  who will not only be aware of his "issues" but who will also ACCEPT him as he is...they'll have compassion and tolerance for this boy, who will grow into a teen, and who will grow into a man. They'll have empathy for his difficulties and they'll celebrate his victories, all because they are reading this blog. 

They will see him for the wonderful person Eli is! 

Not a behavior problem. 

Not some weird kid who yells out in the middle of class and then doesn't remember it five minutes later. 

Not some unfriendly kid who won't even speak to you when you try to talk to him because he doesn't know who in the world you are, so it's best to just ignore you...you might go away. 

NO!  They won't see him that way, they'll KNOW he's just Eli because they already read about that "certain thing he does" or that "way he acts sometimes" here on this blog, and they'll instead nod and smile and say, "That's just how Eli is.  Just be patient with him." 

And they won't be cruel to him.

Thank you.  Thank you to everyone who has mentioned to me that they read the blog, like the blog, have learned from the blog, to everyone who has commented on the blog either here on Blogger, or on Facebook.... you have no idea how much it uplifts me!  Because I know every single one of you will help to support and protect Eli as he grows up.

THAT'S what I can do to help protect him.  I can help get awareness and understanding out there, promote acceptance for all who are struggling with challenges, be it through Autism or something else, and help to get everyone on board. 

Because it really does take a community to raise a child.

Blog's been nominated!

This blog has been nominated for Babble.com's Top 30 Autism Blogs for Parents 2012.  If you have enjoyed reading the posts, please consider clicking on the link at the top right of the page at voting for us! 

Thanks for the nomination and the votes!  Hoping to have a chance to post a new adventure very soon!

Let me guess...there's a new moon on the horizon?

Yes, yes there is...April 21st is the next New Moon.  I knew there had to be one soon because I remembered the full moon was a couple of Saturdays back, but mostly because we went through a meltdown tonight and it's the first in quite a while.

I suppose I have been enjoying the "peace" a little too much, not paying attention to possible triggers.  I wasn't paying attention to the fact that there was a New Moon coming soon, and therefore Eli's emotions will be running a little high.  I didn't think ahead that the minor change in his after school pick-up schedule today may have upset the routine just enough to have a backlash later on.  I'm aware he's been having a rough time in class this week, being a little more disruptive than he's been recently, because he's excited for his birthday celebration with a friend  on Friday. (we're having to celebrate a week early since his birthday weekend is filled with our choir production at church)  He even was being problematic enough today that he had to move to the back of the room until he could get it together.  He's giving his magnificent teacher a real run for the money this week.  So, yes....the signs have all been there that we were heading for this.  I just was basking in the glow of how well everything has been going, and I wasn't paying attention.

Sometimes Eli is so literal that he has a hard time shifting gears to a sudden new direction, even if it benefits him.  He'd been given a direction to complete a task when we arrived home before he was allowed to play video games.  He had to spend 10 minutes playing with Sami, because she'd been in her crate several times today while Ben was out of the house, and we had choir practice tonight, so she would have to be crated again.  Ben had told E he needed to spend 10 solid minutes playing with her before he played his game.

Eli was going to take her out and then play with her.  When his brother decided to help him out in order for Eli to be able to play video games sooner, Eli completely lost it.  Ash had taken Sami out and was running around in the yard with her,  Meanwhile, Eli was trying to get the dog to come back in so he could play with her for ten minutes. In Eli's mind, Ash was keeping him from doing what he'd been told to do, and therefore it was going to take even longer for him to get to play his video games.

The frustration reared up and took over.  He threw the dog's collar in his fit of anger and screamed, "This is not fair!"  He burst into tears and would not be consoled.  He ran into our bathroom and locked the door, which has been his safe haven and meltdown habit for some time now.  He runs there to isolate himself and calm down when the emotions overwhelm him.  It's the farthest room in the house from any other place.  

Ash had tried to explain to Eli that he was trying to help him out, but it was too hard for Eli to understand the situation had shifted and that he was being done a favor.  In his mind he had to complete the task he'd been given in order to get to his main priority - playing his video game.  After all, that is his main goal at the end of each school day ... get home and play.  He could not see the favor that was being done for him.  All he could see was that he was being prevented from playing with the dog, and therefore it was keeping him from playing video games.

I left him alone for about 5 minutes to give him a chance to chill, and then I went into the bathroom.  There he sat, on top of the basket of clean towels, arms crossed protectively across his tummy and chest, shoulders tense and curled in, and wearing his "very unhappy" face.  I sat on the toilet lid and had him come to me.  I held him on my lap and explained to him that Ash was helping him out by playing with the dog instead so that Eli could go ahead and play his game. There was no reason to be upset. He listened, and I was impressed he'd already calmed down considerably.  Another kudos to the newest medication!

When he realized that he could go play now, he seemed to relax.  I asked him if he was okay, he said yeah.  I said, "E, you let your anger take over, buddy.  You let your emotions overwhelm you and that hasn't happened in a long time.  Do you realize...you let the anger get the best of you?"  It wasn't a scolding.  I just wanted to point it out to him so he would recognize what happened and hopefully be mindful of his emotions the next few days while we wait out this phase of the lunar cycle.  He nodded.  He knew he'd lost it.  But I told him how impressed I was that he had recovered so quickly!  He'd done a really good job.

Ash was in the house by that time and apologized to Eli, explaining that he wasn't meaning to upset him, he was trying to help him out.  They "made up" and then Eli initiated looking for the collar himself, remembering that he'd thrown in. (Another thing I was impressed with - that he remembered, and that he was mature enough to try to correct his mistake)

We still haven't found the collar.  It must be in, under or behind something because three of us looked for a solid 10 minutes and the collar still hasn't turned up.  It's "somewhere" out in the sunroom.  Maybe next Christmas we'll discover it when we're pulling out Christmas decorations.  Thankfully we had a spare!

Excerpts from the past

The other afternoon had been a little slow, so I began to go through some old files to clean up and clear out.  I happened upon several documents that told some old Eli stories I'd forgotten about entirely.  They brought a smile to my face and laughter to my heart.  I thought I would share them here.

A recap of a story I'd written down - so I wouldn't forget it - from July 2006 (Eli would have been 4 years old at the time)

July 13, 2006

My dad has a large but light red birthmark in the middle of his forehead.  You don’t really notice it much, unless he’s ticked off….at which point it serves as visual notification that you need to turn and walk away.  My sister ended up with this birthmark right in the center of her forehead as well.  I never notice hers and haven’t really seen it since she was a baby.  I remember that hers resembled a check-mark and we joked that God had checked her off as a “good egg” on the baby assembly line before sending her on down to us!

For my parent’s 43^rd Wedding Anniversary, my dad took us all to Red Lobster in Parkersburg (technically Vienna) WVa tonight.  Ben, Ash, Elijah and I arrived slightly ahead of Mom, Dad, Rachel and her (former boyfriend - name withheld), and we were waiting in the entryway for the staff to arrange a table-for-eight.  Eli (four years old) was running in circles, excited to be at “Wed Lobstah” once again!  There were no other restaurant patrons at that moment so I figured he could burn off a few moments-worth of energy before we were seated.  He wasn’t really running actually…more like dramatically walking around really fast, hunched over slightly, with his elbows swinging out to the sides in a pronounced fashion as he roamed around and around the small entryway area exploring his environment.  Had other patrons arrived, I’d have reined him in quickly.

As the rest of our group arrived, we all began our greetings and Eli swung past on this trip around the area, saw dad, and said, “Hi Gwampah!  I like your duck!” and then continued on his way.

We all stopped and silently stared at dad as he looked himself over, searching for a “duck”.  Finding no ducks on clothing, etc., we all just chuckled, shrugged and continued on with our evening. 

On the way home, however, I asked Eli what he was referring to as Grandpa’s Duck.  He looked at me for a moment, and I thought he wasn’t going to answer.  Then he pointed at his forehead and I suddenly realized that he must’ve seen my dad’s birthmark for the first time.  Why he thought it reminded him of a duck, I’ll never know, but we all had a great laugh about it, and when we got home I called to fill my folks in on where Dad’s “duck” was located.

From a Family letter sent in March 2008 (Eli would have been 5 years old a the time, about 6 weeks shy of his 6th birthday).  

Eli is planning to try his hand….or perhaps I should say feet…at soccer this spring.   He’s played some at school and seems to enjoy it.  He’s doing better at being capable of following directions and behaving, so this is a good time to try something new.  He too will be having a room makeover in the summertime.  His room is still in the theme of the original nursery that was made when I was pregnant with Ash.  Eli will be turning six at the end of April and has far outgrown fuzzy little barnyard animals, don’tcha think?!  J  It’s part of his birthday but he understands he’ll have to wait until summer for it to be done.

Pictures of how we re-did his room, and it's still decked out in Star Wars to this day, (only not as neat!) with framed old movie theater posters from the original showings!  And I managed to order a bedspread that totally matched one of the posters and didn't even realize it until everything arrived! 

 From a letter to my grandmother, November 2008 (Eli would have been 6 years old at the time)

Eli is now taking **** and seems to be doing fairly well on it.  He’s doing a little better at school, not giving his teacher as hard a time.  His anxiety seems a little better.  It will take time for it to build up in his system enough to level out and stabilize him, but we are already seeing improvements.  So that’s good! 

At his counseling appointment last night, his counselor learned a valuable lesson.  Ha ha!  J  She told him that she was going to be coming into his classroom soon to observe, and then she made her mistake…she tacked on, “Is that okay?” at the end.  Eli promptly told her NO.  I was sitting there cringing as soon as “Is that okay?” started out of her mouth.  I wanted to scream, “NO!  DON’T ASK THAT!”  Ha ha ha!  I told her later, it’s probably not a good idea to ever ask him permission.  I had to cut in and tell Eli that really he didn’t have a say in this, that Meg WOULD be coming in to observe in his classroom, but she would not embarrass him, she wouldn’t even talk to him, and no one would know that she was there for him.  She would just come in like any other college student who would be doing field experience, or like a student teacher, but she’d just be sitting there.  Eli wouldn’t have to talk to her or anything.  He still wasn’t happy about it, because it will cause him major anxiety the day she shows up.  Eeek! 

These are just a few stories that are fond memories because they either made me laugh out loud, or possibly snicker behind my hand.  Even during the "rougher" days when E was really struggling, even then he never failed to bring me such joy. 

How did we get here from there?

Eli and his cousin, Austin.  These boys are two peas in a pod!

I was observing Eli the other night, and I started thinking about how far he's come.  I've had so many people respond either via Facebook, emails, or in person, to say how much they enjoy the Blog and how they had no idea Eli was dealing with such struggles! 

I think that in itself speaks of how far he's come.

I'm grateful and blessed that he blends in with almost everyone else these days.  But I think it's important to remember from where we've come, and never forget.

I was so ignorant back then, when Eli was a toddler.  I had no idea that his lack of wanting to be held, his difficulty playing with other children at the sitters and in pre-school and at church, his poor behavior, his inability to sit still, and his lack of awareness of other people were all indication of a serious problem. 

I think of the severe behavior he constantly presented, and our neverending frustration with him.  Why won't he behave?!  I think of the times we ended up smacking his behind because it was the only thing that would give him pause and get him to calm down briefly.  Oh, the guilt I feel about that now!  It ripped my heart out at the time, and it hurts even today that we spanked the little guy, and he couldn't even help what he was doing.  We just didn't know!  

I spoke to Eli about that the other night.  I asked him if he remembered when he used to get spanked.  He said he did, and I told him how it hurts my heart to think that, out of sheer ignorance, we did that.  I explained we thought he was just being defiant and after we tried everything else, and those things didn't work, we would spank him, hoping THIS time it would get through to him that we meant it!  We were serious!  He could not behave that way, and he was going to learn how to be a good boy!  UGH!  I told Eli, with a lump in my throat and tears in my eyes, how sorry I was, because for a long time I just didn't know he couldn't help it.

You know what that sweet, precious child said to me?  "It's okay, Mom...don't cry...I'm not mad at all."

I don't deserve that boy. 

It's a miracle he's not mad...I remember the angry child he once was.  I remember the toddler who screamed and threw enormous fits over the slightest thing.  Most of the time it didn't even make sense what he was upset about!  How many times I had to pick up the writhing, hysterical child and remove him from a location not suitable for a tantrum, risking injury to myself, not to mention sheer embarrassment as all eyes turned to stare, to wonder, to judge.  What am I doing wrong?  Ash never acted like this?  I'm not doing anything differently?  Ash is so good...why won't Eli stop acting like this?   The questions never stopped rolling around in my head, mixed with blame, confusion, frustration, fear and sorrow you can only imagine if you've lived it.  What had happened?  Why was I failing as a mother?

I remember the Pre-school and Kindergarten teachers talking about Eli not playing with the other children, mostly keeping to himself and how he was happiest if left to his own devices, left alone completely in fact...he didn't always want to participate in what the class was doing, and of course that would be problematic in many ways. 

Family photo under the tree in Kim's Grammy's front yard.
The boys were so young!  So were we!

I remember conferences with the Kindergarten teacher, (who'd taught Ash as well, and she was wonderful) and how frustrated and concerned she seemed, telling me, "Kim, I can't even get him to look at me...it's been months, and I can't make a connection with him at all."

I knew what she meant. 

When Eli did start trying to make friends with children his own age, he'd be all over them.  He didn't comprehend physical boundaries. He'd be wrapped around them, which would freak the other child out. He was also prone to hitting or other aggressive acts that weren't always fueled by anger.  Sometimes I think it was just his way of attempting to connect to his playmate and he didn't understand it was inappropriate behavior. Often the other child would change his or her mind about wanting to be friends after all.

All the years of the poor teachers trying to keep him in his seat, and quiet, and on task.  All the years of daily notes home or emails, telling me the horrors of the day.  Don't get me wrong...I wanted to know!  I wanted to back up the teachers and present him with consequences at home as well, so he would know we were all aware of his behavior and he wasn't getting away with anything. I still appreciate a teacher who will communicate with me. But all those years of "red light" days (form of consequence system - you start your day off on the green light, if you have trouble you move it to yellow, which is supposed to make you pause and get yourself under control, and if you don't -- or can't -- you end up moving to a red light, which means you're in big trouble then, Buster!) Eli had red light days EVERY day.  Every single day.  

Seriously no wonder the child deals with severe anxiety!!!  Every day he was incapable of keeping his act together, every day he was in trouble, every day we both had to go through the stress and the shame of disrupting the class, and dealing with consequences.  Who wouldn't suffer from severe anxiety after years and years of this?!?!  My heart aches even now -- probably moreso because it's no longer sharing frustration, disappointment or even anger with the hurt.  All those harsh emotions have faded away, but the heartache of all my little guy went through remains. Why wasn't I smarter to know something was terribly, terribly wrong??  We just thought we had a very difficult child on our hands.  We thought he was just being stubborn.  I sit here writing this with my heart reliving all those emotions...the pain...the hollow feeling inside, the helplessness...the lost feeling....the exhaustion.

Didn't someone know?  Hadn't anyone come into contact with this before and recognized the signs?  Would we have even believed them if they'd told us?  I'm not trying to cast blame...there's no one to blame!  Not even me....although I still feel the guilt.  These are not things one just knows automatically.  But WHY didn't ANYONE know?!

But now that I do know, I want to reach out to YOU and You and YOU and him and her and YOU over there....and want to shout to all the world and say, "IS THIS SOMETHING YOU'RE SEEING IN YOUR CHILD?!  Are you dealing with this too?!  It may be completely different what your child is doing...remember, autism effects every person differently!  Is someone suggesting to you to get your child evaluated?  Did it make you mad?  Because you should listen...even if it's to rule something OUT!!!!"

I wonder now if I would have listened if someone had suggested to me that Eli might've been on the spectrum.  I can see me being offended back then.  I can see myself thinking, "Pffft, really?!  Sure Eli has some behavioral problems, but surely he's not on the Autism Spectrum!  Ha!  How dare they even suggest that!"  I can see me taking that stance.  Maybe.  I'm not sure.  It's hard to say now how I would have reacted then, because maybe, just maybe I would have been grateful.  Grateful to have a possible answer!  A reason!  A Direction to head, a LEAD, instead of all the wasted years of flailing around in that sea of doubt and anguish and desperate disorientation and confusion!  Maybe, just maybe, if someone had sat me down and said to me, "Here are the things I'm seeing in Eli...and here are some of the criteria for an ASD (Autism Spectrum Disorder)... I saw some similarites.  I thought you might want to be aware...."  Maybe I wouldn't have been mad at all. 

Maybe we could have gotten a diagnosis before the age of nine.  Maybe we could have spared Eli some of the severe anxiety, if we'd known.  What ifs and maybes are pointless for him at this point, but MAYBE this can help your child.

I'm not going to lie.  The evaluation process has been years long and exhausting.  Possibly because we were just floundering around with no real direction and trying, trying, trying to find some answers!!  We were referred to counseling for his anger issues when he was four or five.  The sessions tended to make him angry.  How's that for irony?  He fought us on going.  I remember it not being all that effective, but we were doing what we'd been directed to do at the time. 

I remember going through the beginnings of the evaluation process the summer after Kindergarten for ADHD; the kazillion verbal questions, the packets and packets of paperwork, the missed days of work, the numerous appointments, just trying to get him some help, trying to get some answers.  The anxiety and the ADHD took about a year to be diagnosed.  Then the adjustments to medication, that only helped a little at the time. 

The age-old question of "to medicate or not medicate" knowing there are people out there who don't medicate, and those few who pass judgement on those who do.  How many times have I read or heard "My mother refused to medicate me and I owe her so much allowing me to be who I am...it's the reason I've accomplished what I have, and stand before you today."  or "I refuse to put my child on medication just to make him behave!  He is who he is!!"  More things to fill me with guilt and doubt.  

Eli on January 16, 2011 right after
he was baptized at church

Sometimes I doubt our choices to have Eli on the meds he's on, but then I see the Eli of today!  See him thriving?  See him succeeding?  I see a child who tells me he doesn't blame me for dumb choices I made 5 years ago, simply because I didn't know any better.  I see a child being invited for play-dates, sleepovers and birthday parties, hanging out with his buddies at church and cutting up with his friends at school.  His meds have helped to bring him to this new and better place where he can be a typical kid too.  For Eli, the meds are the right choice.  His life is so much better with them. 

It's been some time since we've had to live through a serious meltdown, or had a negative report from school for inappropriate behavior.  We have his medications to thank for that.

We still have to watch out for sensory overload, but we've gotten better at anticipating what might cause it.  We still work with some of the quirks, such as Eli insisting only one package of cereal be opened at a time.  All that cereal has to be eaten before the next package can be opened, and it's very upsetting to him if another package is opened before the first one is gone.  And evening snack has to be about the same time every night.  We know that we can't mess with any of "his routines" and if you do, you're bound to set off some anxiety, which might lead to a meltdown.  But Eli's getting better at recovering before completely losing it.  We still have to watch overloading him with too many directions at once.  Stick to one or two directions at a time, or the hands will come and grip the sides of his head and he'll squeal, "I have too much to do!  I can't do all that!"  We're used to his coping strategy of ignoring "new" people...it's uncomfortable.  He'd rather pretend they aren't there.  There are many, many other things with which he struggles to overcome daily, but to most of these things our family has grown accustomed, and other people don't see.

Eli has come so far.  We all have!  

I have every confidence he will continue moving forward, but we'll never forget how this journey began.

Clearing out the "Clutter"

Once in a while I get into a "pitching frenzy".  Stuff that has been sitting in that drawer, untouched for how many years??  Out you go!  Kitchenware that was "inherited" from a relative who has passed away, which now sits in the already overstuffed cabinet and hasn't been touched once in the five years since the funeral....See Ya!  Clothes I hate to wear, or I'm too fat to wear, or are just downright ugly or uncomfortable...You're so outta here!

My three guys know when I get in one of the frenzies they better not sit in one place for too long, or they might find themselves stuffed into one of the trash or donation bags! 

We have a Good Will Store in town called "New To You", and I suspect they love to see me pulling in to the dock where you unload donations.  I imagine a lot of the shelves in their store are lined with crap...Oh, I mean STUFF...that I have purged from our house over the years.  I don't know how we end up with all that STUFF.  It's not bad stuff.  It could be good stuff for someone.  It just doesn't belong in my house! 

Does anyone else know what I mean??  Is anyone else dealing with this phenomenon?? 

Sometimes I just want to throw out everything and start over.  Of course that would be entirely wasteful, but occasionally I feel like every drawer is stuffed, every closet is overflowing, every cabinet is packed to the point of bursting!  Where does it all come from???  I go through and purge and pitch and get rid of the clutter...and it feels really good for a while!  Very freeing!! Then I turn around and the drawers are full again, the closets can't hold another item and I know I'm going to make the New To You staff really happy once again.

In the last year I have begun clearing out the clutter in my LIFE as well.  It all began with a book we were reading in my Clump at church.... 

Before I continue, I'm sure that word threw some of you for a moment, so let me define.  Our Clumps are our Small Groups at church...we don't have cliques, we have Clumps.  I'll write more about my Clump another time, but for now, just understand it's my small group at church.

 

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 http://www.amazon.com/Crazy-Love-Overwhelmed-Relentless-God/dp/1434768511/ref=sr_1_1?s=books&ie=UTF8&qid=1334165738&sr=1-1



My Clump began reading Crazy Love, by Francis Chan last year - AWESOME BOOK!  Strongly recommend!  Anyway, in the first chapter, he talks about clearing the clutter out of our lives.  Most of us tend to DO too much.  A lot of what we do is probably really good!  But even so, if these THINGS are cutting into the really important parts of your life, then you need to make some tough decisions and let some of it go.  Are you sacrificing your family to do stuff?  Sacrificing your health?  Are you sacrificing your spiritual well-being?  Are some of your relationships sacrificing your mental or emotional well-being?

If you answered Yes to even one of those questions, it may be time to start clearing out the clutter in your own life.  Just as I pull out the overstuffed drawer and start examining its contents, muttering "Why is this in here?  Why am I holding on to this??  What purpose does this thing have?  What value does it hold?" -- just as I clear out the unnecessary STUFF from the house, I began to go through my life deciding what to keep and what to let go. 

Let me tell you, some of those decisions were tough!  I've backed away from a few personal relationships that were causing me too much stress.  I've let go of some favorite commitments or groups or classes that I really DO want to be a part of, but they were taking away from time at home, and that was affecting my family, so those groups had to go for now.  They were all GOOD THINGS!  Maybe one day when my kids are grown and they have lives of their own, I can re-join the Wednesday night bible study group, or get back together with friends to walk.  But right now, my family needs me.  ELI needs me, to be there, to support him, to help him, to love him and help him through his more difficult struggles.  I know where I'm needed most, and therefore I had to choose. 

As Eli will often remind me, "I'm way more important than _______ (fill in the blank), Mom!" 

Yes, E...you most certainly are.  You, Ben and Ash are far more important that doing any of those other things.

While letting those things go was quite difficult, ... others things, not so much.  Eli's neurologist at Children's Hospital who refused to smile at us, scoffed at some of the information we gave her about Eli, and couldn't even bring herself to look at my son, let alone speak to him....she was not so difficult to let go.  She was the Dr. who - upon witnessing Eli's emotional meltdown because he wanted one of the latex gloves in the exam room and I would not allow him to have it (because that's the rule in Dr's offices these days - no rubber gloves!  They are not toys!) - got up and left the room and didn't come back.  She patted Eli on the head as she walked out and said, "I can tell you are having a rough day", and that was it.  She was gone.  After sitting there for 45 minutes wondering what in the world was going on, a nurse walked in and asked us if we needed something....???  When we explained that we had been sitting there for nearly an hour waiting for the Dr. to come back, the nurse disappeared, came back with referrals to Psychololgy, Psychiatry and the Autism Behavioral Clinic (where his eventual evaluation finally came from last October) and ushered us out of the room.  We were being dismissed.

Eli reading in the car as we traveled
to a Dr. appt last week

Nope, it wasn't such a tough decision to let that Dr. go.  She had run her course as a resource, got us where we needed to be, with the referrals for getting Eli the help he needed, but the thought of spending time with her in that small room ever again was causing me unhealthy thoughts.  I felt joy when I called to cancel the next appointment, and politely let them know we would not be back.

Is there anyone or any situation in your life like that?

I recently stopped the appointments with another Dr. of Eli's, not because of any negative event, but because E's currently doing quite well, and to continue to go see her once a month was a waste of her time and ours.  Eli was no longer benefitting from the appointments, and she was in complete agreement.  She's there if we need her in the future...just call.  That too felt very uplifting, to let go of those appointment.

I've reviewed all sorts of things in my life.  I know it will take time to clear out all the clutter, and I know that somehow it will continue to creep in and re-establish itself over and over again.  It's certainly something I will have to stay on top of.  I've learned to say No to things I don't feel passionate about, and even to some things that I do feel passionate about.  Someone suggested to me that I start a support group for parents of children in our area who are on the Spectrum.  Wow...really? 

While it SOUNDS like a noble and beneficial undertaking, exactly when would I have time to do that?  I wouldn't even know where to start.  If I didn't already work two jobs, I might have time to research how one would actually go about doing something like that, but I still see it cutting into the time I need to be at home with my family.  I don't see where it would be beneficial to me or my child at this time. 

It's not a bad thing.  I'm sure it would be a good thing for someone.  It just doesn't belong on my to do list.

What about you?  Is it time to clear out some clutter in your own life?