Visiting the Cemeteries - Memorial Day Weekend Part 2

I love Memorial Day Weekend.  I love the three days off, that turning-point feeling of Summer Has Arrived!!!!, the family time and the downtime.  I always am mindful to mentally honor our fallen Military troops on this day, who have given the ultimate sacrifice for our country...for you, and for me.  Thank you.  Thank you to the men and women who serve and to the families who have also sacrificed and suffer with pride and sorrow for their lost loved ones.

I am mindful this day is also a time to remember our own family members who have gone before us.  Memorial Day is a time for remembering...remembering our kin, our legacy, our history, our genealogy, our bloodlines, ... our memories.

Eli cleaning on his Grandma Emily's
headstone.  He never knew her, as she
died when he was only about 7 months old.

I want Memorial Day to mean more to my boys than just a long weekend.  So a few years back, we started a new tradition with the boys.  It's the day we remember our loved ones who have passed and honor them by checking on them.

It's the day we visit the cemeteries.

Only Ben's family is buried locally, so that's who we go to see.  (My family is buried in Washington Court House, Ohio, an hour and a half away and we haven't yet made that trek on Memorial Day Weekend ...but I long to, so perhaps next year I'll do better about planning it.)

Monday morning we loaded up the back of the CR-V with Clorox wipes, a bag of rags and four 1-gallon jugs of water and headed out.  First stop we made was at Memory Gardens, where Ben's mother, step-father, uncle and one set of grandparents are all buried.

We drove to the top of the farthest hill and stopped first at his mom's grave.  We all piled out and set about cleaning off the headstone.  It's hard for Ben to get up and down from the ground a lot because of his back problems, so Ash and Eli did most of our cleaning this Memorial Day.  Hi

Ben's step-father, Ralph, is buried here too.  It's wasn't in too bad of shape.  A little bird-poo, a little splattered mud and lots of grass clippings from where the grounds crew mows.  Because we go every year, though, it's well cared for and doesn't look neglected.  Eli never knew Ben's mom.  He was only a few months old when she passed.  Ash remembers her, but sadly, Emily never knew either of her grandchildren.  Early on-set Alzheimer's robbed her of this blessing.

Ash cleaning Grandma Emily's headstone.  

Ralph and Emily (McConkey, Brooks) Kail,
Ben's step-father and  Mother

Ash used to accompany Ben at the nursing home when he would go out to visit his mom.  Ash vaguely remembers her, but unfortunately only when she was ill.  Emily did not raise Ben for most of his childhood, and it makes my heart sad when I think how much she would have liked having grandsons, and how proud she would be of the good man Ben is.  I hope it honors her that we come to check on her and Ralph each year.

Eli and Ben scrubbing Uncle Ronnie's grave marker

Next, we moved over to Ben's uncle Ronnie's grave.  Ronnie was Ben's dad's brother and such a kind and good man. A severe car accident had left Ronnie scarred and broken, physically and emotionally, in his early adulthood.  He loved kids, but never had children of his own and Ben fondly remembers how he would be the only child in a house full of adults and it would be uncle Ronnie who would get down on the floor to play with and give some much appreciated attention to Ben when he was little.  He adored his uncle.  

   

Ben's paternal Grandparents -
Edward and Edna (Timson) Brooks

After we cleaned uncle Ronnie's headstone, we moved to a different section and located Grandma and Grandpa Brooks' grave. I never met Grandpa, but I grew up knowing Grandma Brooks, since Ben's cousin, Angie, and I were friends.

Grandma Brooks was a sweet, generous woman who learned about life during the Great Depression.  No matter how little she had, if you came into Grandma's house, she fed you.  She would have adored having great-grandsons!  She was a loving, giving woman and I wish our boys could have known her, but I feel blessed and honored that I at least knew this dear woman whom Ben loved.

At this point we left Memory Gardens and drove about 30 minutes to a little country cemetery in the Coolville area, located on a back-road off another back-road.  It's small and quaint and isolated.  This is where we visited Ben's Dad's grave.  The marker still hasn't been put in place, though it's been nearly a year and a half since he passed, so I have no photo of that one.  But we think we figured out which grave was his.  We didn't stay long, since there was nothing to clean, but I was still really glad we went there.  Hopefully by next year, the AMVETS will have the headstone, or plaque, in place.  

On our way out of the Coolville cemetery, Ben got stung by a bee on his wrist.  It flew off before we could identify it -- Ben never even saw the darn thing, but he sure felt it!  Because he has a tendency to react to stings, I always have Benedryl on hand.  Thankfully I had some in my purse, since the welt was quickly evident and you could see the area surrounding it (about the size of a baseball) beginning to redden and grow warm.  Thankfully again, we had drinks in the car, so he was able to take the Benedryl quickly and by the time we made the 30 minute trip back to town, the swelling was barely visible and the welt had shrunk down to hardly anything at all.  Whew!  Thank you Benedryl!

Ben cleaning Grandma &
Grandpa McConkey's headstone

Eli cleaned Grandpa McConkey's
military footstone

Last stop was the hardest.  As we returned to town, we went to the West Union Street Cemetery where Ben's maternal grandparents are buried.  These are the people who raised Ben from the time he was an infant until his teens. 

Grandma and Grandpa McConkey were who Ben considers to be his parents. He loved them so. 

I watched as Ben forced himself to get down on his knees and begin to clean their headstone himself.  It was a touching moment for me to see, knowing how physically straining it is for him to get down like that, and in doing so, he showed them such love and respect.  Grandpa died when Ben was around 13 or 14, and shortly afterward, Grandma was a passenger in a vehicle that was T-boned by another vehicle, causing her brain-damage.  She lived another 10 years in a nursing home, but was never the same.  Because she didn't know Ben anymore, he pretty much had lost her as well.  It was a painful loss for him, to lose both of these dear people so close together, and he was at such a young age. Makes my heart sad.

Arley and Sylvia (Robinette) McConkey,
Ben's maternal grandparents, and who raised him
from infancy to his teens.

After we cleaned their headstone and paid our respects, we headed home... a sense of accomplishment within us, a sense of family pride and a mild sense of sorrow...the kind that makes you sigh and smile gently.

I like that our boys are growing up doing this.  I hope one day when my spirit has moved on and my remains lie in the ground, that at least once a year, someone who once loved me will come to check on the spot where I lay; will sweep away the grass, wash away the bird-droppings and the dirt.  I hope they will continue this family tradition, and as they stand over my earthly body's resting place they will sigh and smile, and share some pleasant memories of days gone by.  And then I hope they head home to enjoy their weekend together, as a family, and make new memories of their own.

First Bath - Memorial Day Weekend Part 1

This past weekend was Memorial Day Weekend.  It was hot and sticky, but a totally glorious three-day weekend!! 

On Saturday, Eli had a plan. "Mom," he said to me. "Sami needs a bath.  She stinks, Mom.  Can we please give her a bath?"  

Now, I don't actually smell the dog.  I mean, she smells like a dog of course, but I don't find her offensive.  

Eli, on the other hand, with his super-nose and ability to be over-sensitized by the sensory-world surrounding him, has been complaining for a few weeks now that the dog stinks.  

I really like his initiative!  And since we do what we can to help him learn how to cope with life in general, this was a great opportunity to problem-solve!  If the dog smells and you don't like it, this is how you can take care of the problem.....  

And therefore a bath for Sami ensued late Saturday morning....

Eli was all about helping too!  He wasn't leaving it all up to me!  He wanted it done and was willing to step up to do it...he just needed me there for guidance and instruction.  God Love Him, he's such a great kid!  

Eli gathered up the towels and got stuff ready. He was so excited! We got the water run at the right temperature - not too hot, not too cold.  We led Sami to the bathroom like a lamb to slaughter, but after her initial freakout, she relaxed and seemed fine after once she was in the tub; and she actually seemed to enjoy the experience overall!  

Eli giving Sami her first real bath - May 26, 2012

For the remainder of the weekend Sami was all about walking into the bathroom and sniffing the tub, looking into the tub, licking the tub, and wagging at the tub.  I don't know how she'll feel about it when she's full-grown.  I hope she still likes it because once she's a Big Dog, because there's no way I'll be able to force her or lift her into the tub!  It would be great if she still likes the process and willingly steps into the tub for me! 

Sami patiently allowing herself to be washed

Sami REALLY liked the rub down with all the towels after the bath.  She laid there and enjoyed the attention and rolled over so we could dry her belly.  She was all bundled up and cozy and cute!  

Sami's favorite part was drying off.
She got all snuggly in the the towels!

After we freed her from the towels, she got the "Rips"... where she's so excited, she just RIPS around the house at breakneck speed, racing round and round until she wears herself out.  Eli laughed and laughed and called her a "Crazy Dog"!

She must smell better now.  I haven't heard him complain about her stinking since Saturday morning! 

I plan to get Eli trained well and maybe that's something he can do for her every couple of weeks or so as part of his chores.  

I wonder how long it will take before the novelty wears off and it becomes another, 

"Aw mom...do I have to?!" chore??

When it's special and means something



 A few weeks ago when Mother's Day was approaching, my sweet husband asked me what I wanted. 

Now, I don't know about you, but material things don't usually give me a thrill.  We're not rich.  We're not even "well-off", whatever that means.  When you ask me what I want, my mind goes blank. Our house is very small and I'm actually a few weeks away from doing a great big purge of our "stuff" as it is.  I don't need any thing. 

I need to lose a lot of weight.  I need more time at home.  I need more time to exercise and I need to feel more at peace and less frazzled.  I need to be able to wake up when my body and mind decides it's good and ready, not because the screeching alarm says it's time.  I need to have a really good grasp on what is the absolute best choice in academics for Eli.  I need confidence and wisdom.  I've only scratched the surface here on my list of needs. I have none of that, but the last time I checked you can't buy any of it or wrap it up in a box.

So as usual, I hem-hawed around and said a lot of, "I don't knows" and such. I asked for the boys to each buy me a box of my favorite pens -- Bic round stic Grip Fine point --a box of black and a box of blue, please.

Then, during the week leading up to Mother's Day, I was reading another autism mom's blog and she had mentioned and provided a link to The Jewel Box Studio, where the artist created and sold Autism Awareness jewelry pieces.   I followed the link and was so excited about the jewelry I saw that I told Ben, "I found what I want!" 


The brown side was what was advertised, but the white side is beautiful too, and I've worn it several times on both sides already.  Each necklace is an individual, there are no two alike.  It's a simple puzzle-piece outline against an abalone background. 

If you will remember the puzzle piece is the symbol of Autism.  I am so delighted with it because it means so much to me!  I can't think of a better Mother's Day Gift for me, because I take my role of being a Mom to a kid with Autism as an honor!  An honor that has been trusted to me directly from God the Father.  I don't take it lightly! 

Isn't it amazing when a piece of jewelry, or any other item for that matter, has deep, special, personal meaning to you??  Share with me something that means that much to you!  I would love to hear your stories. 

To someone who doesn't know, it's just a necklace.  But to me...to me it's a symbol of strength, a statement of courage, it's my medallion of hope...and oh, how I hope...I totally hope....that someone who doesn't know anything about Autism will say to me one day, "Hey...that's pretty, tell me about your necklace..." 

And I sure will!

School's Out For Summer (almost!)

Eli has one more day of fourth grade to go!  Tomorrow is the last day of school . While he's celebrating and looking forward to those "long" summer days that stretch out before him....which actually pass rather quickly.... I'm feeling tearful that we have to leave behind Mrs. Mostamazingteacherever.  

And I think Eli has trouble with change?!?!

Ah well....all good things will come to an end.  God willing, next year will be a blessing for him too.  We did get a letter from the school yesterday indicating that Eli is eligible for the Honors Math Class they are creating. 

Wait...what?  My son?  The one who rolled around on the floor lamenting "It's Too Hard" and "I can't dooooo it!!" for an hour and a half while trying to do his math homework for the first three to four months of school this year???  An Honors Math Class?  Are you sure?

According to his OAA and MAP scores and a few other scores and grades they took into consideration, he certainly qualifies.  There's definitely a brilliant mind in that little red head and behind that ornery smile...never doubt it!  It's just a matter of convincing him to make the effort.

For the past two school years Eli has been eligible for the Talented and Gifted Program in Reading.  

Unfortunately, "eligible" does NOT equal "willing".  

He fought us tooth and nail about participating until we threw up our hands and said, "...then don't!"  See, he doesn't see it as an honor or something to feel good about.  Eli sees it as extra work and a mess up of his regular daily routine, so therefore in his mind, it's a negative thing.

Yesterday, I read the letter to him and explained what an honor it is to be so smart that you get to be in an HONORS class, and Wow! he must have scored so high on his tests, and blah blah blah, just trying to get through to him what it meant and how it was a big deal and a good thing, not a punishment.  I want this child to stop telling me that school is boooooooring.  He needs to be challenged, find school fun, and develop a fascination for discovering new things, because it's about to get a lot harder, and I'm desperately afraid we're going to lose him all together in the years to come.

He sat for a bit and listened to me.  He blinked at me.  He stared at me.  Finally, I said, "Look Buddy....there are so many things you're going to struggle with ... but then you're going to start realizing that there are OTHER things that you are going to be so much better at than most other people, and those are the things that you need to grab hold of with both hands and don't let go!"  I held up the letter...."THIS is one of those things!"

He blinked at me again and finally said, "Okay...I'll do Honors Math Class next year."

Gasp!!

Praying this is a turning point.  If we can help him to get interested in his academics and help him to build the desire to achieve, and work toward things on his own, to find a passion for learning and for doing really well, without forcing him to, without us being the "slave-drivers" and "homework enforcers".... oh, the possibilities that will open for him, just as it does for all children who discover a sense of self-initiative!  I am so keeping my fingers crossed!

****************

So...Farmers Market was awesome!  No pictures due to a dead phone.  Next time we go, I'll make sure my phone is charged up...I'd accidentally left it in my purse overnight, so no juice! 

Overall, the whole family seemed to enjoy the experience.  I showed Ash the strawberries.  I said, "See Ash...this is what size strawberries are really supposed to be, not those huge ones we get at the store."  Ash smirked and said, "I like my strawberries genetically engineered!", nodding and looking all smug and amused with himself.  

Then he tasted the REAL strawberries, fresh out of the field, at home later that day.  Now Ash is singing a different tune!  He didn't know they could be so sweet!  Yay!  Score one for Real Food!

****************

Tomorrow: Saturday's Adventure

Tomorrow, the whole family is going - for the first time - to the local Farmer's Market to buy our food groceries.  I'm so excited I can't stand it!  I wanna go NOW!  I'm trying so hard to get back on this bandwagon of healthier eating and eating mostly REAL food.... I keep falling off because processed garbage is so much easier.  And tastes so good. But I'm not giving up!!!!  So off to the Farmer's Market we go! 

I told the boys they could each have money to go buy things for themselves, as long as it's REAL FOOD.  

Ash immediately wondered aloud, "I hope they have REAL CANDY!"  

Sigh.  Do ya think he's missing the point?

So I altered my offer a bit to encourage them in the right direction.... You can buy some real food candy - if that even exists - but not until you find at least one real food that you are willing to eat, or at least try.  I'm trying to expand their minds here!  I don't care if it's a fruit, a veggie, cheese, bread, nuts, meat...I don't care!  As long as they find it themselves and are willing to give it a shot! I want them to share the joy of trying something new and of being a part of the process.  

Ash is generally open to trying any new foods.  Eli, on the other hand, really struggles with even being willing to taste anything new.  The first time we offered him ice cream (several years back), he fought us tooth and nail about even tasting it!  We remind him of that all the time, and he's really quite tired of hearing the story.  But hey!  It gets the point across!  Once he finally tried the ice cream, he was instantly in love with it!  Of course he was!  It was ICE CREAM!  Veggies are a different story of course.  He won't eat ranch dressing, or I'd coax him with dipping things in ranch.  Personally, I think if he TRIED ranch, he'd like it, but hey...what do I know!? 

I would very much like to get Eli on board with this whole "healthier eating" thing.  It's a hard enough struggle going from easy food to real food.... but when you put all that time and effort into preparing something, only to have the one kid, who you really, really need to convert, turn up his nose and gag... well, man, it just takes the wind right out of my sails. 

So that's why I'm dragging the whole family with me tomorrow!  I want it to be a fun outing!  I want it to be SO MUCH fun to Eli that the idea of buying his own new, real food to try suddenly seems like a great time and a wonderful idea!!!

Wish us luck!  I'm very hopeful to get pictures and have my next post be a completely positive and uplifting tale of progress made!!!  

Stay tuned...............

...help...

Last weekend was a difficult one.  It was also a wonderful one!

Last Friday evening I was able to attend another glorious Mother Daughter Banquet with my beautiful Grammy (maternal grandmother) who is 101 years old.  What a blessing to be able to attend together another year!  Also in attendance were my own Mother, Ruth; my Sister, Rachel; my Aunt Jennie, and two of my Grammy's very special friends, Troi and Janie.  We had a marvelous time and my uncle Ken (mom's brother, husband to Jennie) was one of the all-male team of servers.  We ate lasagna and all kinds of yummy things, heard music from the Children's Choir, and received roses.  I never lost site of the fact that I'm not in control and I never know when THIS might be the last time, so I was quite grateful that we were all gathered together again this year to celebrate Mother's Day with Grammy.   It was very important to me that I was able to attend again this year.  I'd left early from work Friday afternoon and traveled to where my Grammy lives, and I stayed the night in a hotel room with my sister, which my Papa so graciously paid for as a gift to us girls.  It was such a wonderful time!

However, this meant I didn't see Eli from Friday morning, when I left for work, until I got back home late morning on Saturday, a little over 24 hours.

E was really excited when I got home and we hugged a lot and said how much we missed each other.  We were home together Saturday afternoon, but then I left again....

Saturday evening the girls from my Clump (my small group from church) all went to see the production of In The Heights, http://en.wikipedia.org/wiki/In_the_Heights  which was fantastic!!!  I'm ready to head for New York and see a Broadway Play now!!!  I left the house about 5:40 p.m. and didn't get home again until nearly 10:30 p.m.  Eli was already in bed, so I didn't see him again until Sunday morning.  But let's backtrack a bit...

Before I left Saturday evening to meet the girls, Eli had a pretty serious meltdown.  In fact, it was so serious I now have a whole new set of concerns about his teenage and adult years, but we'll not focus on that today.  Let's just say I've not seen Eli that angry and out of control in several years.  If ever.

Am I to blame?  Was my absence the night before the reason he became so extreme in his frustration with his video game, and therefore so quickly and severely enraged when his dad spoke to him about a behavior he'd just presented?

The whole scene occurred right as I was getting out of the shower.  There I was, running around in a towel trying to regain control of the situation (wasn't going to happen) and I nearly canceled my plans to attend the play because I wasn't going to leave Ben and Ash alone to deal with it all.  But after 30 minutes or so Eli got himself under control after spending some quiet time in his room.  He came out again, after he picked up all the items he'd thrown about during his fit (that was required before he could leave the room; first calm down...then pick everything up and clean up the mess he'd made, then come out).

Eli came first to me, then with a little prompting, he went to Ben and apologized.  He was doing alright, so I went to dinner and the musical after all.  I called home to check on things, and all was well.  Eli was keeping it together, watching a movie and doing just fine.

The next morning in church, as I stood on stage singing with the Praise Team, I could see Ben leaning over to speak quietly to Eli and I could see we had a problem.  I recognized the look on Eli's face.  The scowl that tells me a dark, quiet room is needed.  Now. Possibly ten minutes ago.

By the time I went to sit down, he was still seething.  He was angry because he couldn't go to the nursery where Ash was serving that day.  Eli's too old for the nursery, and they had several kids down there that morning... there was no need for him to go in there as well.

He didn't like that answer.

I was fearful he would erupt, the anger was just rolling off him... so I asked him to take a walk with me.  He refused several times, but I whispered that I may have been asking nicely, but that I was indeed insisting he come with me. He threw the hymnal he was holding to the side and stomped out of the sanctuary.  There was no screaming, no tantrum however, so Thank God for small favors.

I spent my Mother's Day morning in my church office (where I work my second, 1/2 time job) with a livid ten year old.  He'd snuggled with me, leaned into me for about 20 seconds when we first went into the room and allowed me to comfort him, and then the anger took over and he stormed away from me and sat on a different couch, not communicating or even looking at me.

Again...is this all because of me and my lack of being there?

Eli spent ten minutes raking his fingernails across the fabric of the couch and breathing so hard and fast I was sure he would hyperventilate.  I kept the lights out and talked softly about the things I could see out the window...how green the leaves were, how the rain made me sleepy, how I remembered what rainy Sundays felt like when I was a little girl, and how they feel to me now.

I asked him if he even knew why he was feeling so mad.

Eventually - after a lot of encouragement - he was able to let me know without talking to me (he just wasn't ready for that yet) that he sort of knew what he was mad about...but he didn't really understand why he was feeling so severely angry.  He was mad that he wasn't able to go to the nursery with Ash.  But no...Eli didn't understand at all why his emotions were so hostile and so overwhelming the last few days.

After about half an hour I knew he was going to be okay.  I'd missed the entire service and I could hear singing and I hoped someone had seen me leave with Eli and understood why I wasn't there singing with them.

Eli started getting goofy and silly acting, overcompensating with baby-talk and silliness... because his anger had dissipated and he was now feeling so much better.  When he's feeling super happy, the goofiness emerges.

Ben came searching for us, concerned and confused, but found us in a stage of healing.  We scrapped the eating-out for Mother's Day plan and exchanged it for a trip to the grocery store instead - where Ash and Eli waited in the car, because Eli didn't need the over-stimulation of the grocery store - and then we proceeded home to have a glorious afternoon of rain-induced napping and some much needed downtime.  At least that was what I did...I'm not sure what the boys were all doing at that point.

He's been fine ever since.  I warned his teacher he'd been having some serious anger issues all weekend long and to watch for signs, but he's been pretty even keel this week.

You know I've always been good in a crisis.  I'm the fixer.  I'm the protector.  It's later, after all the bad stuff has passed and is over with, then...then I fall apart.  I remain calm and strong while I have to, but when it's safe, I have my release.  Usually this involves tears and utter exhaustion.

This weekend - as fantastic and glorious as many parts were - it completely wore me out.  More than that it brings fear to my heart, as well as a greater sense of how important it is to make Autism Awareness a top priority.  Not just for parent and teachers, but for entire communities.

Witnessing my beloved, precious child's meltdown, his anger, his hostility, his complete loss of control.... everyone needs to be aware of the struggles our kids are dealing with now!!!  And we parents need help.  We need help now! Because in a decade these precious babies of ours are going to be adults.

I'm prayerfully hopeful that between now and then My Eli will have learned coping strategies that allow him to keep it together.  But what if he can't?  Then I want all of society to be aware, to recognize the signs, to HELP!  Police officers need training.  Employers need training.  Programs need to be available to help society as well as our kids and us.  Compassion needs to flow.

People need to help!  

Communities need to come together to embrace our kids who will one day be adults.  Parents need financial support now in order to obtain the therapies for their children NOW.  For example, Eli could really use help with pragmatic speech therapy...meaning he doesn't need help learning how to talk, he needs help learning how to have a conversation.  Especially with complete strangers.  He struggles terribly with that, and what adult doesn't need that skill?  But he didn't score low enough to receive the therapy through the school system, so we'd have to go to a private speech therapist and pay for it out of pocket. Even if insurance helped somewhat, shelling out a co-pay week after week, month after month is more than we can do.

While I recognize that there's a lot of media coverage happening now because Autism is now considered an epidemic, and in April everyone was jumping on the band wagon to yell, "Hey!  Look at me!  I went blue and I'm aware!" -- and that's great!  Really! We NEED awareness!!! -- but it's May now...

and my kid is still on the Spectrum...

and we still are severely limited to what we have access to in order to help him.  I know there are a lot of people out there talking and advocating, and again, that's really great.... but I guess I have this message to You....

YOU who are in the position of making these decisions, of making these programs happen, of making the insurance and financial assistance based on diagnosis, not income, available so that we parents can take care of our children now, to help teach our children the skills they need so that in a decade they can more easily function in society in a way YOU expect them to....  

YOU are not moving fast enough for my child.  He needs you now.

Picking battles and stepping back

Quick story....  Today is Pioneer Day at school.  The entire school is involved and they are eating food from Pioneer times (well, everyone except Eli, that is - he informed me he would NOT try anything new!) and everyone is dressing like Pioneers.  Girls are asked to wear skirts and blouses, and boys are asked to wear plain pants (no jeans!) such as khakis, a plain shirt and could add a hat or suspenders if they wanted.  They're really trying to get everyone INTO it, and it should be really fun!

So we borrowed the hat and suspenders from Grandpa and tracked down plain shirt and appropriate pants and he wore his hiking boots to school too.  All was well!

Then I got the phone call this morning at work.  "Will you talk to you son please?  He's refusing to wear the suspenders."  Eli gets on the phone. 

"Hi Mommy..." near tears, whining...I can hear the verge of hysterics in the voice.

"What's the matter E...you don't want to wear your suspenders?"

"NO!  I hate them, I don't wanna wear them." Louder voice.

"What don't you like about them?"

"I don't like them." More whining, more upset tone.  Meltdown on the way if pushed too much farther.

"All your friends will be wearing suspenders.  It's part of the outfit.  Do you care?"

"No, I don't like them!"  Almost crying, really insistent.  Mom and Dad aren't going to win this battle.  It doesn't matter that the outfit won't look AS cute without the suspenders...suspenders aren't worth a meltdown.

"Okay, don't wear them.  Will you please wear the hat?"

"Yeah...I'll wear the hat."  Calmer...still whiny, still on the verge of tears.

"Okay, thank you...put your dad back on...and have fun today!"

Told Ben..."They're suspenders...they don't matter...he'll wear the hat."  Ben said okay.

So I email the teacher to let her know the suspenders weren't happening!  "So sorry!  We got the "garb" but I didn't figure you would mind if we averted a meltdown.  :)  Have a fun day!"

She writes me back: "Hi Kim!!!!  He wore his suspenders!!!! He looks so cute in his outfit. I hope Ben got pictures!!!"

Me, I sat and laughed and laughed and laughed! 

Then I called Ben..."Yeah, he decided to wear them because he decided he didn't look right without them." 

Well, how about that.  We gave him permission to not wear them, and didn't force the issue, and then he made his own decision to wear them after all.  What a kid!

How cute is he?!

Eli, dressed for Pioneer Day, 2012

Strong Love

(Author's Note -- Thank you once more for all the votes on Babble.com's Top Autism Blogs.  If you read, and you haven't voted, please consider doing so...just hit the badge to the right, scroll down to find Eli's World (last I knew we were at #15) and click on the thumb's up LIKE symbol to vote. 

Additional note -- Life has been a bit crazy and finding time to write has taken a back seat quite often.  It's taken 3 or 4 days to get this blog written and posted in my "free time"...whatever that is.  Bear with me!  I didn't start out writing this with an intended connection to motherhood, but as we enter into this Mother's Day weekend it occurred to me how fitting a topic this turned out to be!  Happy Mother's Day to all you moms out there, who have experienced Strong Love in ways only a Mother can fully comprehend.)

Since Sami has come on the scene at our house, I have noticed several things. 

Sami - May 2012

First, Eli is experiencing the emotion of STRONG LOVE for the first time.

Secondly, Eli is altering his routines to accommodate Sami.  These are the same routines, by the way, that he has created for himself which are set in stone and SHALT NOT BE ALTERED!

And thirdly, Sami is developing some routines of her own!  And they too SHALT NOT BE ALTERED!

Strong Love....wow, it can really change a person.  Think of how many ways you change when you fall in love with someone and it's fresh and new...the lengths you are suddenly willing to go to for him or her.  How you're willing to try new things you might not have considered doing before, simply because the one you love enjoys it!

If you're a parent you'll completely understand the level of emotion that I am referring to ... think about the intensity of love you experienced when your first child was born, how you never knew it was possible to love THAT MUCH...how you could barely take your eyes away from his face...how you memorized her features...how you knew her cry from all the other babies in the nursery, even before you reached the room... how you couldn't remember what in the world your life was like, or what you even did, before he was born!  And you would never go back!  Wouldn't change a thing!  How you will sacrifice everything you have, everything you are, just for that baby, because you love him that much!  Strong love.  It will overwhelm you, and you welcome it with open arms.

I've interpreted some of the research information I've read as saying that some kids with autism are thought to be unable to experience emotions ... or at least in a way that we would typically recognize as how people react.  Some of our kids will stare blankly at you with a deadpan face when you are hoping for an emotional response, any response, from them at all, and when they don't react the way we think they should, well...we really don't know what to do with that, do we. Some you can't touch or hug without causing a serious upset. 

I personally don't like to say that those affected on that level are "unable to have emotion" however, because no one entirely knows what is really going on in those beautiful, unique minds.  They may be filled with emotion on the inside that just never reaches those who are watching on the outside - at least in a way we are programmed to recognize. 

Maybe these children simply cannot express what they are feeling in a way that we're capable of comprehending, but who are we to say they CAN'T feel it, you know?  Sure it may not be the way we think they should feel it...but I bet there's all sorts of feeling going on in there.  Otherwise why would they react to strongly to sensory overloads and such?  To me, that has to be emotion-fueled.  But I'm not a Dr, not a research assistant, not a lab tech or a scientific journal author.  I'm just a mom.

Imagine not being able to comprehend facial cues 

 Eli doesn't struggle with feeling his own emotions as much as some others.  He certainly is openly able to feel them, but he does struggle with how to appropriately express the emotions he's feeling. 

He also continues to struggle with facial cues on other people's faces, with recognizing what emotions they are experiencing, with reading how another person, outside of himself, is feeling.  This was one of his suggested therapies, but there are limited resources in our area and no financial help for what is available.  Unfortunately we can't pay hundred and hundreds out of pocket, he doesn't qualify for help through the school (didn't score low enough) and so we do what we can at home to help him.  But that's a whole other post....  

Needless to say, he would benefit from being able to better SEE people's faces and understand that the person is getting upset with him, or that a person is happy, that a person is feeling sad today, or that a person is already angry, so maybe now isn't the best time to be really sarcastic when talking with them. 

I've always been profoundly grateful that Eli is "touchable" and hug-able and that - even though we continue to work on appropriate responses - he is fully capable for expressing his anger, his amusement, his disappointment, his sadness and such. 

I love to be able to touch and hold him!  I love nothing more than to hold his little body against mine as we snuggle in the big, blue chair!  I swear I can just feel his sweetness!  I love to kiss his hair and forehead and hold him in my arms.  You can just feel that he's precious!!  I know I won't always be able to do this....I'm trying to get my fill now. 

I know Eli loves me too - in fact I never tire of hearing, "I love you, Mama!" in his little voice - but I am witnessing him really experience this STRONG LOVE for the first time for Sami.  In the 6 1/2 weeks we've had her, I've noticed an increase in his maturity, his willingness to stop what he's doing and take the dog out, because he doesn't want her to fail by having an accident in the house.  He's not baby-talking AS much as he once did, unless he's cooing to her what a sweet baby she is, or telling her what a pretty girl she is, or what a good girl she is. And even that is more sweet-talking than baby-talking.

At bedtime, Eli and Sami BOTH insist on her being in bed with him for a while.  It's not as important that Mommy stays in the room to snuggle now...as long as Sami is there, it's okay...you can go Mom!  And that's okay!  I rather enjoy being able to go in and kiss and hug him, maybe talk for a moment and say prayers, then be able to leave without being clung to, held on to, have to physically remove my clothing from his curled fingers, get called back three times for "just one more hug".... nope, Sami is there so Mom is free to go back to what she was doing before bedtime tuck-in!  That kinda rocks!  Thank you Sami!

The mornings are developing their own routine as well.  Sami absolutely MUST enter Eli's room and get up on the bed with him before it's time to get up.  Half the time she wakes him - trust me, he does not mind - by crawling up and either laying or sitting on his head.  The other morning I had to enter his room to retrieve clothing.  Eli was headed to a Dr. appt. that day with Daddy and was able to sleep in, so I ATTEMPTED to keep Sami out of the room so she wouldn't wake him up. She'd followed me to the door enthusiastically, but I turned and blocked her way when I entered and closed the door behind me, leaving her in the hallway.

Oh my GOSH!  

You would have thought the world was coming to an end the way that dog carried on!  She managed to wake Eli anyway and he sleepily mumbled, "Hi Sami". 

I whispered, "She's not in here honey, I didn't want her to wake you...."   Big Duh...she'd probably awakened the folks in the next house!  So I ended up letting her in, and they had their snuggle time anyway.

Most mornings, this is "Stop #1"  for Eli

Eli has even been willing to alter his set-in-stone morning routine for Sami...instead of getting up and going to the green chair (normal Stop #1 after leaving the bedroom), he's been willing to lay in bed with her, skip the green chair altogether, and then go straight to the breakfast table, simply because "...but Sami isn't as comfortable snuggling in the green chair now, because she's growing bigger.  She can't get as comfy like when she was smaller, so we'll stay in bed until 6 a.m. and then I'll go straight to the table, okay?"  Um...okay!

That's a sacrifice he's willing to make.

He's told me on numerous occasions how much he loves her.  I see the patience he shows her, the affection he showers upon her, the forgiveness he extends to her!  That alone expresses the strong love he feels for her!  Compassion, mercy, ... what better way to express love?! 

Eli often struggles to recover from the hurt and anger of being "wronged".... he's pretty good at holding a grudge!  Occasionally a considerable amount of time will pass before Eli's even open to the thinking about the possibility of maybe, eventually, getting around to forgiving someone for something they have done.  He's rather stay mad for a little while. Or a long time even.

But with Sami...it doesn't seem to matter what she does.  We often hear, "It's okay!  She didn't mean it.  I'm alright.  It was an accident."  I bet his brother Ash wishes he would be granted that leniency once in a while!  No one bears the brunt of Eli's grudges as much as big brother Ash!

Strong love is pretty incredible.  Eli and I talked of it the other night. He had just finished telling me once again how precious Sami was to him. So I spent time verbalizing to him what it was he was experiencing.  I wanted to say it out loud to him so he had a definition of this new emotion he was feeling inside, so he would have a reference of it for the future.  I will continue to make verbal connections to this Strong Love emotion for him, so he can remember the experience, the way it feels inside, the words I use to describe it, so that he can file those connections away until he needs them again in the future. 

I know he loves me that much too...maybe even more... but I've always been in his life.  I'm not "new", so he really doesn't have a sense of how deep his love runs there.  Do any of us though, when love has become comfortable and familiar?  We take if for granted, don't we. Perhaps in that there's another lesson for us all to learn. 

Hmmm...things to ponder..... Happy Mother's Day