Salads and Seizures

Aaron walked into the kitchen on Saturday morning a little over two weeks ago –  March 2nd, to be precise – and saw that I was boiling some eggs.  Ever hopeful that whatever I am cooking will be something he likes and something I am making for him, he stopped and watched for a few seconds.

“Mom, what are you making?” he asked.

I told him that I was making his favorite salad.  He stared blankly, as if he was utterly clueless about this favorite salad.

“You know, Aaron,” I continued.  “The salad you love so much.”

“The salad with Ranch?” he questioned.

“No,” I told him.  “You know, the salad with the eggs on top.”

Still blank.

“And the cheese and the bacon,” I explained.

“Oh yeah!” he finally said.

But he still gave no name to this mystery salad which really is his favorite salad!  Aaron has such a hard time with names of people and pets and, amazingly enough, food!

“You call it Egg Salad, Aaron,” I told him.  “But the real name is Seven Layer Salad.”

I knew he wouldn’t remember the name, but he knew it for now.  It was fun to watch his happy reaction to the thought of this salad for supper…whatever it’s called!

We were looking forward to our day and our weekend.  The day before, on Friday, Aaron had two seizures, and so he wasn’t able to go to his day group.  He missed movie day, which always makes me sad.  Thankfully, though, Aaron loves staying home and showed no regret at all.

On Friday evening, we all went to Wal-Mart to get Aaron’s weekend treats as well as some fun food for the weekend.  We were expecting a strong winter storm to hit on Saturday evening and into Sunday, so there was excitement mixed in with our fun.  We are snow lovers!  I had especially waited until Gary was home from work so he could go with us, just in case Aaron had a seizure in Wal-Mart.  We have learned that when Aaron has one or two seizures, he might have a drop seizure.  These seizures, drop seizures, are so dangerous and unpredictable.  This past year has seen Aaron have some serious injuries from falling.  Thankfully, our shopping trip was uneventful and was fun for all of us, Aaron especially.

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There were no more seizures during that night.  Aaron was happy as could be to think of his free day ahead…the anticipated snow…making chocolate chip cookies with me…steak for supper…AND his special salad!!  Whatever it’s called!  😊

Later that morning, before noon, Aaron was downstairs in Gary’s study.  Aaron was talking up a storm of his own with Gary, as usual.  I was in the kitchen, out of sight of the stairs.  Suddenly I heard a terrible crash…and then the noise that I definitely recognized.  A seizure!!

Gary was beside Aaron in an instant.  As I started down the stairs, Gary told me to get towels.  I was panicked and in tears as I ran for towels, hurrying them down to Gary.  There was blood all over Gary’s hands.  I knew this was serious.

As he started up the stairs, Aaron had fallen backward into a file cabinet, hitting the bottom metal handle with his head and actually bending it.  Aaron is usually not conscious for a period of time after a seizure, sleeping soundly, but not on this day.  He woke up, maybe because we were holding him and applying pressure to the gash on his head.  Or perhaps he awakened because of the pain.  He was combative and scared, something we’ve never seen.  He was fighting us, trying to get away and go up the stairs as we held him tightly.

Finally, Aaron calmed down.  He wanted to know why Gary’s hands were bloody, which of course was scary.  We explained what happened and told him we would need to take him to the ER.  Soon we were in the van, me sitting in the back with Aaron while Gary drove.   Aaron was coherent then.  The bleeding had stopped, but not his pain, of course.  Yet he was remarkably calm and understanding, a trait he often displays in these frightening times.  A gift from God, I’m sure.

I thought of other gifts from God as Gary drove.  We talked about how thankful we were that the sun was shining and there was no snow yet.  I was VERY thankful that it was a Saturday and Gary was home.  And we were thankful still that there is a good hospital and emergency room out here in the country not far from our house.

We continued to be grateful that Aaron was seen immediately and that the CAT Scan showed no damage to his head or neck.  Aaron was so compliant during the scan, even though it hurt his head and the bleeding began again, worse than ever.

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But oh, how my heart hurt for our son!  I couldn’t let him know that.  Gary and I stayed strong for Aaron and for each other.  I really wanted to curl up in a ball and cry, but God gave so much grace to be fully there for Aaron.

And there was Aaron, fully talking up a storm about nuclear bombs, of all things!  Talk, talk, talk he did in his typical Aaron fashion.  He knows a captive audience when he sees one, let me tell you!!

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God gave special strength to Aaron, especially, as he endured 8 staples being put in his head.  I knelt by his side, stroking his arm and face and talking to him during the ordeal.  With each staple, he would flinch…eyes closed…and mutter a soft “ow.”  I felt like my heart was being pierced each time.

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I tell you, our children with medical issues…and I know a lot!…are true heroes.  They endure more pain IN their lives, and disruption OF their lives, than I can fathom.  And yet they just keep on going.  One of our sweetest blessings is that Aaron doesn’t feel sorry for himself or complain about his lot.  He LOVES to talk about what happens to anyone who will listen, trust me, and even to perfect strangers…but he doesn’t act like he resents this life that he lives.

However, once in a while, he does give us a glimpse into his heart and his thoughts.  He did just that on Sunday as we made his cookies, lots of snow outside our windows, and his head still bandaged.

“Mom?” he began.  “Saturday, I thought, would have been a good day, but it wasn’t.”

I really wanted to wrap him in a hug…which he would have promptly pulled away from…and empathize with him about what a bad day it certainly was.  But I knew that I needed to point him to a principle that God points ME to, over and over.

Thankfulness.

“I know it was a hard day, Aaron, but it ended good,” I reminded him.  “What did you have for supper?”

“We had steak!” he answered with enthusiasm.

“And what else?” I prompted him.

He thought a few seconds.  I was hopeful that he just MIGHT remember the name of the salad.

“Triple egg salad!!!” he exclaimed.

Triple Egg Salad??!!

How on earth did Seven Layer Salad become Triple Egg Salad?!

Whatever.

So, for that moment, we were both thankful for Triple Egg Salad!

And in my heart, for so many other blessings as well!

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No More Dog

Yesterday was the day that Gary and I have talked about and dreaded for so long.  We had to say that final goodbye to our precious Great Dane, Jackson.

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What a beautiful and wonderful dog he was to our entire family!

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In 2007, Andrea really, really, really wanted a dog…a BIG dog!  Gary and I really, really, really weren’t sure.  But finally, we said yes and the rest is history.  Jackson was born in May of that year, so he lived a good and long life of nearly 12 years, surpassing the normal life span of a Dane.

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After a few years, Andrea moved to Texas for grad school, and stayed there for career and now marriage.  Jackson stayed with us and enjoyed visits over the years from Kyle and Andrea’s doggies.

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Aaron loves animals and Jackson was his special friend.  Patient, kind Jackson tolerated Aaron’s noises, Aaron’s behaviors that sometimes scared him, and other behaviors that pleased him – like Aaron’s knack for sneaking him table food and doggie treats.

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Jackson also at times showed concern for Aaron’s seizures, such as in this picture shortly after Aaron awoke from a seizure.

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Many of you have asked how Aaron handled this loss of Jackson.  Gary and I talked so much about how to tell Aaron when the time came.  For months, Aaron knew that this possibility might become a reality.  We talked about it a lot, but when our decision came, and the appointment was made, it was hard to tell Aaron that the “maybe” was now going to happen the next day.

We told him at supper on Monday that on the next day we were having to put Jacks to sleep.

“I don’t want to put him to sleep,” Aaron said.  We told him that we agreed but we listed all the reasons it was necessary.  Aaron was mostly quiet about it then.

As I tucked Aaron in bed that night, he said again that he didn’t want to get rid of Jackson, as he put it.  But Aaron knew it was not going to change, much as we wished it could.

The dread hung over us all day yesterday, like a gloomy cloud.  I wondered what Aaron would do when he got home from his day group, knowing that in a short while we would take Jackson to the vet.

“Can I give Jackson some treats?” Aaron asked.  So, I told him to go ahead and give him all the rest of the chicken jerky treats in the bag, which were mostly small pieces, but to give them to him slowly.  Of course, this happened.

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Jackson was thrilled!  And so was Aaron, most definitely!

The time came, much as we wished it wouldn’t.  Gary and I got Jackson ready to go, making a potty stop in the yard.  I ran up to Aaron’s room while Jackson sniffed outside.

“Aaron,” I said.  “It’s time to take Jackson.  Do you want to say goodbye?”

“No,” Aaron flatly said.

I told him that I understood and said we would see him soon.

Gary sat in the back of the van with Jacks, keeping him from falling as he was so prone to do.  I pushed the button to close our garage door and was backing out of the driveway.  Just as I got on our road, I looked and saw that our garage door was opening.

“Good grief!” I said.  “We don’t have time for this!”  I thought our door was malfunctioning.

So, as I pulled back into the driveway, with the garage door opening, I saw legs.  And as the door fully opened, there stood Aaron in the middle of the garage…right at the open door…his right hand in the air, waving back and forth.

Bless his heart, he had indeed wanted to say goodbye.  I will never forget that image of him standing there waving his hand to his buddy.

I opened the side van door, and Aaron walked outside.  He stuck his head in the door.

“Bye, Dad!” he said.

He couldn’t bring himself to say the words to Jackson, but his eyes darted nervously to look at his friend.  Then Aaron backed up, eyes still looking at Jackson.  And as he started to walk away, he looked back one more time, still with scared eyes focusing on Jacks.

It was incredibly sweet and sad and broke down all my tough reserves as I cried all the way to the vet.

And Jackson, in what seemed like one final way of expressing his opinion of all this, pooped in the van!  Served us right…right?!

When we got home and sat down to supper, Aaron did another amazing thing.  He didn’t seem to mind at all that we had some tears, and if you know Aaron, you know how shocking that is.  Aaron hates for anyone to cry.  If I just sniff my nose, he instantly asks if I’m crying.  He thinks crying is weird…but in reality, tears make him very uncomfortable and he doesn’t know what to say or do.

Later, after supper, Aaron and I sat down to watch some television.  He was snacking on his new bag of Chex Mix.  Suddenly, he jumped up and walked to the kitchen, returning with another of his bowls.

“Here, Mom!” he said.  “I’m giving you some Chex Mix!”  He proceeded to pour me some in the bowl he had gotten and bring it to me with a big smile on his face.  And even though I didn’t really want it, I would never have said no after I saw his happy face.

You see, Aaron loves to share with people…most of the time.  But sharing his food or his movies or his treasures…whatever he has…is Aaron’s love language.

And it was like he wanted to share a snack with me because I was sad.  Kind of like he shared all those jerky treats with Jackson earlier, except I merited a bowl.  Then he kept bringing me the bagel chips and the “twirly crackers,” as he calls them, that he doesn’t like…dumping them in my bowl with all the excitement he would have if he was giving me something of huge importance.

But this was of huge importance because it showed me that he cared that I was sad.  Empathy doesn’t always come easily to Aaron, but on this night it did.  So I ate the crackers that I didn’t really want so much, more for him than for me.  Yet it WAS for me, too, because it was like a good medicine for my heart in so many ways.

Aaron, last night, agreed with our sadness and he showed it in the way that Aaron does…not with words or deep conversation…but with his actions.  He tolerated our tears, and he shared what was important to him at the moment.  I never tasted any better Chex Mix than what I ate last night!

This morning, after Aaron ate his huge pile of scrambled eggs that I made him for breakfast, he put his plate on the kitchen counter.  Little pieces of egg were on the plate…little pieces that ordinarily would have gone in Jackson’s food bowl for him to eat, much to Aaron’s great delight.

“I was almost going to go out and put those in Jackson’s bowl,” I said to Aaron.  “It’s hard to think that Jackson isn’t here.”

“Yeah,” Aaron replied.  “No more dog!”

And he walked off with that, making his chuckling noise that isn’t a laugh.  It’s like he’s satisfied with what he’s said…not necessarily happy but satisfied.

That’s the bottom line if I ever heard a bottom line.  Just get to the point with Aaron.  Say it like it is.  Put things into facts, place them in a category, and move on.

But I know he thinks deeply and he feels deeply.

That goodbye wave and my Chex Mix will remind me of that for a long, long time.

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Special Aaron

 

No mother can ever forget the birth of their babies, each one so unique and completely amazing.  That first baby, though, holds a very tender place in a mother’s heart.  Our first baby was Aaron.  He wasn’t loved more than our other two children, but that first birthing experience was one of a mixture of fear and uncertainty that culminated in total wonder at the little squalling miracle lying in my arms.

A son!!  I remember a feeling washing over me that I had never experienced before.  Total love.  I knew that certainly no other woman could have ever felt as blessed and…well…as special as I did in those new moments of motherhood.  I know now that this wasn’t true, but you could never have convinced me otherwise during those first fresh days of holding my little son.

I examined him from the top of his fuzzy head to the very bottom of his wrinkled toes.  Every detail was so perfect.  He was so tiny and complete…wispy eyelashes, button nose, tee tiny little fingernails and toenails…just every single part was truly a work of art from God.

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Lots of years have passed since my first introduction to motherhood in that old wooden WWII hospital at Fort Carson, Colorado.  So many details of Aaron’s future, unknown to us back in 1984, have woven themselves into our own future now.  Never, ever did we dream that our Aaron would continue to be defined as “special,” but now in the sense that we often call “Special Needs.”

Sometimes I still shake my head in disbelief at that title.

Yet there is no denying the reality of this path upon which God set our steps.  Aaron’s first seizure in Germany at the age of seven led us to a diagnosis of Epilepsy.  Seizures have never been out of the picture since that time other than for brief periods of reprieve.

Then later, at the age of 14, came the surprising diagnosis of autism…Asperger’s Syndrome.  This wasn’t a common condition at that time.  I didn’t even know what Asperger’s was.  But we’ve all learned along with Aaron just what it means to live with what we call “Special Needs.”

It’s very interesting to look up this word “special.”  It’s a word that we so routinely use that we don’t give it much thought.  So, I did just that…I looked up this special word in the dictionary…and I was touched by just what it means to be special.  Especially what it means to Aaron, and so to us as well.

 

SPECIAL:  Distinguished by some unusual quality.

Our family would laugh at this one, not because we’re cruel but because Aaron has LOTS of unusual qualities.  Many days I wish it was only one.  Some are funny; some are annoying; some he repeats over and over; some are loud; some are very embarrassing….

 

SPECIAL:  Readily distinguishable from others of the same category.

Well, that’s one way to put it.  He’s very readily distinguishable when he stops in the crosswalk at Wal-Mart and holds his arms up just to be sure that traffic knows to stop!  He’s totally distinguishable when I remind him to look UP as we leave the store and enter said crosswalk again so that he looks for traffic and not at his feet…and he stops in the middle of the crosswalk and looks up at the SKY!!

He’s also very likely to hover at the door of the nail salon like a stalker, watching the women getting their manis and pedis…fascinated by the smells and the sounds…but a little alarming as he curiously stares.

He whistles…he claps…he sings.  Or he stands in the little restaurant in the Wal-Mart entrance and delights in the fact that the attendant thinks he wants to order.

 

SPECIAL:  Being other than the usual.

Usual is so boring to Aaron.  Some days I wish for boring.  But Aaron does add a spark to life on most days.  Sometimes a raging fire, honestly.  Like Gary and I envisioned Friday evening in Cracker Barrel when Aaron decided to take the globe off the oil lamp…that was lit…with real fire.  All was well.  Nothing to see here, people at the table beside us.  Move on.

 

But there is also one more meaning to this word…this special word.  And this meaning is by far my very favorite.

 

SPECIAL:  Designed for a particular purpose.

You see, Aaron was indeed designed by God, just as much as all the other babies ever conceived.  He was designed for a particular purpose.  I don’t always live in that reality, especially on the hard days.  But I know deep in my heart that God made no mistakes with Aaron.  God’s sovereign hand made Aaron just the way he is.  It’s up to me to live in that knowledge, especially when I’m tired or upset or discouraged or embarrassed.

Honestly, one of the huge purposes that I’ve seen Aaron have in my life is to remind me of how much I need God.  How much I need His love and forgiveness and patience and strength.  How when I am weak, then God is strong FOR me and IN me.

 

Aaron reminds me to give:

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Aaron reminds me to love:

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Aaron reminds me to laugh:

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Aaron reminds me to enjoy life:

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Aaron reminds me to keep going when things are tough:

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And God reminds me of these truths:

 

For You formed my inward parts; You wove me in my mother’s womb.

I will give thanks to You, for I am fearfully and wonderfully made.

Wonderful are Your works, and my soul knows it very well.

My frame was not hidden from You, when I was made in secret;

And skillfully wrought in the depths of the earth;

Your eyes have seen my unformed substance;

And in Your book were all written the days that were ordained for me,

When as yet there was not one of them.    (Psalm 139:13-16)

 

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My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening.  I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures.  I would rather have heard a seizure, honestly. 

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels.  I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook.  I love sharing the very unique and humorous ways that Aaron speaks.  His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word. 

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00.  He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set.  But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer.  When Aaron plays a game like this, he has a very hard time stopping it and saving it.  He must reach a certain point in the game, and in his mind, before he will turn it off.  For over an hour he kept repeating the same phrase, loudly: “I’m coming!!”  Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time.  We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out. 

“Can we watch Bones, Mom?!!  Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that.  He was in such a tizzy.  And he could tell that I was tired and didn’t want to stay up late.  His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility. 

Mom was mean.  Mom was dumb.  Mom didn’t care.  On and on.

He turned his DVD on.  Turned it off.  More yelling.  Turned it on.  Turned it off.  Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry.  I wasn’t crying, but he didn’t believe me, so he stared and stared at me.  And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much.  He looked so funny, really, that in my tiredness I did the forbidden…I laughed.  Aaron thought I was laughing AT him personally.  He erupted and we traveled even further downhill than we already were.

It was a wild hour after that.  He was in and out of his bedroom…in and out of bed…in and out of our bedroom.  He was calmer talking to Gary…angry talking to me.   Say goodnight, Mom…no, don’t say goodnight, Mom.  I don’t want your goodnight kiss…OK, I do want your kiss. 

He calmed when Gary came upstairs.  He let me hug and kiss him goodnight.  And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated. 

My calmness during the whole episode only seemed to fuel his flames.  The realistic, upset words I did say seemed to appeal to him more than soft kindness.  So strange how that works.  So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors.  Seizures are scary and sad.  Behaviors are exhausting and often hurtful.  People feel sorry for seizures.  But behaviors…what do you do with behaviors? 

And behaviors leave me feeling like a very unfit special needs mother.  I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me.  Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort.  But my tension was strong, too, and sleep wouldn’t come.  My tossing and turning was keeping Gary awake, too, I knew.  I would relax and then thoughts would wash over me.  I would relax again and Aaron would stir, seeming to be restless as well. 

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately.  How could I have handled it differently?  What should I have said?  What should I have NOT said?  Guilt for not liking Aaron when he’s out of control.  On and on.

What I do know is that God is always there for me.  He heard me last night, there in the dark, praying and confessing and praising.  He knows my form.  He knows that I am human and that I am weak and that I need Him, totally.  He knows that I get frustrated and tired, and that I do love Aaron with all my heart.  And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy.  Some days…and happenings…make it harder than others. 

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace. 

That’s the kind of parent I need to be with Aaron.  Forgiving him…understanding but not condoning…and opening my heart and my arms with love. 

I have no superior wisdom or strength.  I mess up…I give up…I look up.  And there I find God, always understanding and giving me grace. 

God’s a good Father to me, his special needs daughter.  I need all He gives to me and does for me, for I have nothing of my own.  He certainly didn’t choose me for this parenting role because of anything I have to bring to the table.  He chose me because…well, I don’t really know.  But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest.  Which is often.

God loves me, His special needs daughter. 

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care. 

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Aaron and The Wedding

 

Two weeks ago we had…a WEDDING!!!  Our first wedding!!!

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Our daughter, Andrea, was wed to Kyle Kester in a perfectly beautiful outdoor ceremony at the Texas home of Kyle’s grandparents.  It had rained a lot there, even the morning of the wedding; but God told all the weather forecasters that He was sorry to spoil their forecast…that He had lots of people praying for no rain, so no rain it was. 

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It was a small wedding, the way Andrea and Kyle wanted it, and was full of close friends and family who helped with everything and shared in our joy.  Even my brother, John, married them…and his wife, Jeanie, was the coordinator. 

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Family.  When all is said and done, is there anything or anyone more precious to us than family?  And especially at an event as special as a wedding, family is there.  The pictures are taken, the hugs shared, the laughter abounding.  Family love is everywhere during a wedding.

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Yet when all the wedding photographs are finally ours to see and enjoy, we will look at our family wedding picture and have one missing member. 

Aaron.

Aaron could have been there…and yet he couldn’t.  Let me go back in time and explain.

Kyle, from the first time he walked into our house nearly three years ago, was a natural with Aaron.  We love that about Kyle.  He is patient…treats Aaron as an equal…knows how to talk to Aaron…and knows when to redirect Aaron more than most people do at this stage in their relationship. 

Aaron has a very close relationship with Andrea.  Aaron is the older by 18 months, but he still sees Andrea in somewhat of a mother role in his life.  He loves to talk to her on the phone, almost always about himself, but still he wants to tell her everything about his current movie or game or activity. 

But two things happened when Kyle came into this perfect picture.  The first thing is that, to Aaron, Kyle was taking Andrea away from him. 

“I still want Andrea to be my sister!” Aaron exclaimed when he realized that Kyle just might be here to stay.  We explained and explained, over and over, that nothing would change…that Andrea would still be his sister, forever…and that she would still come to visit, and we could go visit her.  And that if they got married, he would gain a wonderful brother!

The second thing that happened to Aaron was the process of figuring out just who Kyle would be in our family, and particularly who Kyle would be to him…to Aaron.  Aaron struggles with just who is who in family relationships.  He may meet a couple and later say that the man is the woman’s dad, not her husband.  Uncles, aunts, and cousins are completely impossible for him to understand.  And brother-in-law?  Forget it!!

Aaron wants to forget in more ways than one! 

“I don’t NEED a grand-brother!!!” he blurted out one day as he expressed disapproval over the upcoming marriage. 

We didn’t even tell him that a “grand-brother” isn’t a thing. 

Many of Aaron’s thoughts about all this marriage business, and the dynamic driving his thoughts, will hopefully be the stuff of another blog one day.  Back to our decision now about Aaron and him coming to the wedding…

Andrea called late one Saturday night last December with the very happy news that this had happened:

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 Kyle and Andrea’s engagement was not unexpected at all, but the reality of it was cause for so much joy.  We were happy, happy, happy!! 

Yet with Aaron, we were slow to tell him the great news.  We knew that he would not be happy, happy, happy.  The next day, on Sunday afternoon, we told him what he suspected to be true…that Andrea and Kyle were engaged to be married.

Not long after, I looked out the window and this is what I saw.

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 Aaron was crunching up mulch.  This is his long-standing way of relaxing…of unwinding…of thinking…of dealing with stress. 

My heart just went out to him as I looked at him sitting there, alone with his mulch and his thoughts.  How difficult it was, and would continue to be, for him to adjust to this huge change looming in his relationship with Andrea.

I opened that door of my heart and I cried.  I cried off and on that whole afternoon…some happy tears for the engagement…some sad tears for the reality that is always Aaron.

My thoughts had already, for months, turned to how we would fit Aaron into a wedding.  Initially, I tried to figure out ways that we could make it work, having a wedding down in Texas where we wouldn’t have someone who could help us with Aaron.  I knew that Kyle’s sweet family would do whatever they could to help us.  But still…

A couple weeks after the engagement, everyone was home for Christmas.  We have such a fun time all together, laughing and eating and telling stories as we catch up.  But Aaron doesn’t have such a fun time.  He does for awhile, but then reality hits him.  He is not the center of our time and attention.  He must vie for his place, take his turn talking, and eventually come to the dawning conclusion that our interest in aliens and nanomites and volcanoes and outer space is waning after several hours…and most definitely after several days.

Then there is all the hilarity as we laugh and tease and hug.  The cherry on top is our annual Christmas Eve Bingo game, with gifts to be won or to be stolen…loud and long…and miserable for Aaron.  He does not like parties…he does not like emotion, including too much laughter…he does not like Dad being goofy as he directs the game…and he does NOT like having his gifts stolen. 

It inevitably leads to what Andrew calls, “Aaron’s Annual Christmas Meltdown.” 

And it is not a tradition that we treasure. 

But this is who Aaron is, down to his core.  He can’t help it and he can’t change it…and certainly neither can we.

So when we were all here this past Christmas, while Aaron was occupied in his room and with Andrea’s beautiful diamond sparkling on her finger, we had a family wedding talk.  Specifically we had a “how do we fit Aaron into a family wedding” talk.  And the consensus was unanimous:  Aaron would not fit into a family wedding.

It sounds harsh, maybe.  Unbending on our part.  Heartless.

But you see, Aaron doesn’t see things like we do.  He has no emotional interest in family events like we do.  What matters to Aaron…is Aaron.  I say this a lot, but it’s because it’s totally true.  Aaron wouldn’t care about a wedding, on many levels, just as he never cared about family funerals or celebrations or anything else that was full of other’s emotions.

Emotions drive Aaron nuts.  So does having his routine disrupted…sharing attention with others…sleeping in strange places…and having to be around lots of noisy people who are not aliens.  He would love it if they were aliens, but they are not.  Just another bummer!

And what if Aaron was having a bad seizure day on the wedding day?  That would have been just awful.

So our only reason for having Aaron with us would be FOR us.  For us to say that Aaron was there.  For us to have the whole family together.  For us to have the photos taken (which Aaron would HATE, by the way). 

Andrea and Kyle’s wedding day was a day for them, and for both our families.  A day to relish each other and to enjoy every sweet moment to the fullest.  Aaron, honestly, would have made it impossible to do so.

Therefore, Aaron stayed back in Kansas.  Abigail “watched over” him, as Aaron says.  She and her fiancé Corey, and Abigail’s parents, David and Melissa, had tons of fun with Aaron.  At least I like to think it was tons of fun for them.  Ha!  It certainly was fun for Aaron. 

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And let’s not forget Gracie and Cosmo, who became Aaron’s furry friends.  He loved every minute of doggie licks and snuggles!

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We all live life wanting no regrets.  But when you have a child with special needs, especially behavioral issues, you sometimes must shift around your definition of “regrets.”  We do regret that Aaron couldn’t be at the wedding, but we don’t regret our wise decision to not make him attend an event that he would truly detest. 

Our special Aaron definitely makes our life unique and forces us to sometimes make very difficult decisions.  Often the best decision for Aaron, though, is the hardest decision for us to make, but Aaron’s needs and his happiness is what must come first.   

And trust me, we’ve all learned that lesson the hard way over the years…more times than I can say. 

Now the holidays are right around the corner, and we’re about to see how Aaron handles his new…

GRAND-BROTHER!!! 

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Parts and Pieces

I walked out into the garage the other day and this caught my eye.

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What is this?  It certainly looks like a small trash can that contains little pieces of paper.  It is that, but it is also much more.  So much more, at least to me. 

You see, this trash can holds the small pieces of paper that are left when Aaron cuts out a coupon for me.  Aaron cuts out the Sunday coupons every Sunday, rain or shine, do or die.  He has quite the coupon cutting routine going on as he positions everything just right.  His pillow on which he sits, his coffee beside him, a particular pair of scissors that are used ONLY for coupons, the coupon box…it’s all placed just so-so before the cutting process even starts.

Then he methodically cuts each coupon on the dotted lines (more or less), and if there is final perfecting needing to be done…if the dotted line cutting isn’t quite accurate enough…then he will continue to cut around the coupon that he is holding until it is just right.  Thus he has small strips of paper that fall to the floor in front of him. 

These strips of paper cannot just be scooped up and thrown away.  No, no!!  He carefully takes each thin strip of paper and cuts it into even smaller pieces as he holds it over his little trash can.  For weeks and weeks, these paper strips pile up inside his green trash can until finally, someday…when the can is very full…Aaron, and only Aaron, will decide to throw them away and start all over. 

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When I glanced at the familiar trash can that day, seeing all the colors and sizes of papers inside, I immediately thought that this is such a true picture of Aaron himself.  There are so many parts and pieces of Aaron, just as all of us have parts and pieces, but Aaron’s are truly unique because of his autism.  Looking at all the pieces of what makes Aaron…Aaron…gives much understanding of what makes him tick.  Maybe it will also give all of us some needed understanding of so many others who are one-of-a-kind special people, yet similar in many ways as well. 

Let me give you some examples of our Aaron’s parts and pieces.

I’ll start with coupons.  Sometimes I will put a Dillon’s coupon in the red coupon box.  If I haven’t had time to sort the coupons by the following Sunday, this is where I will find the Dillon’s coupon. 

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It’s under the bench beside him.  This is because Dillon’s coupons are odd to Aaron and don’t belong with regular coupons. 

This way of thinking is also why I found these a few days ago.

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These are Skittles, but not just any Skittles.  They are misshapen in some way, so Aaron won’t eat them.  To the side they go, to be later thrown away.

This same Aaron principle is why I sometimes find pieces of food on a napkin, set aside by Aaron to be thrown away instead of eaten.  Usually this part of his food is shunned because it’s too crisp.  He can’t just push it aside on his plate.  It must be completely removed from the plate.

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Aaron must nearly always have a spoon and fork when he eats, even if he’s eating a finger food that requires neither.  And multiple napkins, for sure!

Aaron always, always has a salad when we eat in a restaurant.  Often the salad is served on a plate, which he never minds at all.  But here at home, salad must be in a bowl.  One night I suggested that he eat his salad on a plate, to make it easier.  He stood by the table, staring at the offending plate, and then told us that he just wouldn’t eat salad that night.  He wasn’t angry…just very matter of fact.  So I got out his bowl and he ate his salad. 

Aaron enjoys watching Wheel of Fortune at 6:30, after supper.  One evening I asked him if he was going to watch, and he said yes, so I told him to turn on the TV.  He paused.  Why?  Because it was 6:25…and Aaron will NOT turn on the TV for Wheel of Fortune until 6:28.   Yes, you read that correctly.  6:28.  On.  The.  Dot.

6:25 was a ridiculous idea.  Aaron stood there, staring at the clock for a few seconds before his eyes riveted back to the television screen, black because it was OFF.  Clock.  Screen.  Clock.  Screen.

Finally, he spoke.  “Should I turn it on at 6:27?” he cautiously asked.

I took this event as seriously as he did as I told him that I would turn it on, so he ventured out and did just that. 

VICTORY!!!  At least for that one night. 

He wants to only eat lunch at 12:00 on the weekends when he’s home, or maybe after…but NOT before 12:00.  I asked him one Saturday if he wanted to eat lunch and he said yes.  Then he stopped and looked at the clock.  He then said no to lunch.  I knew why, but I asked him anyway.

“It’s 11:48,” he replied patiently to his silly mom.  “I’ll eat at 12:00.”

I’ve watched him sitting on his bed carefully watching his clock before writing his time-to-bed in the log that he faithfully keeps.  As soon as the clock is precisely on the next minute, he will write down the time.  Or I’ve seen him write down the time, look at the clock as it suddenly is on the next minute, and then watch as he scribbles through the time he wrote in order to put down the exact minute. 

And when Aaron watches a DVD, he watches it from the very beginning to the VERY end…all the credits…EVERY single line and word.  He does the same with a book, reading the very first page, the table of contents, and ending with the index in the back. 

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I’ll never forget how I learned that about Aaron.  Years ago, he was reading one of his Handy Answer books and he came to me with a question.  “Mom, what does http/www. ,mean?”  I asked him to show me what he was talking about, so he showed me the very end of the book with all the references to various web sites.  Even after I told him what it was, and that he didn’t have to read that, he continued to read every single one. 

Living with Aaron can be so many things because of his many parts and pieces.  It can be hilarious, fascinating, entertaining, demanding, frustrating, and maddening.  All in one day!!

And just as there are outward displays of his varied parts and pieces, there are many inner examples of Aaron’s unique design.  His way of thinking…of processing life…of feeling valued, or not…of feeling important, or not.  Those parts of Aaron are sometimes very difficult to predict, to understand, and to handle correctly. 

It’s his inward desires that, if unmet, are often understood better by us only after angry eruptions on his part.  This is very typical of those with autism.  Aaron already has a hard time talking to us about his feelings or desires, but it IS those very feelings and desires that drive him to outbursts of anger and resentment. 

So again, we are seen trying to fit together another aspect of Aaron…more parts and pieces, like his coupon pieces, that demand to be seen and understood for what they are. 

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We have been a party to this inner part of Aaron for some time now as it relates to his sister falling in love.  Andrea and Kyle will be married next month, so this occasion has opened a whole new door to us…and especially to Aaron.  Matters of the heart actually open all sorts of doors.  It’s been a very interesting, and sometimes very sad, process…one that I will write more about later. 

One that has plenty of parts and pieces of its own!  Stay tuned! 

 

 

 

 

 

 

 

 

Mentioning It

On our way to Aaron’s day group this morning, we started listening to Aaron’s current music choice – The Best of Alabama.  Aaron LOVES listening to music while we drive, unless he’s talking non-stop…which means he will stop the CD, say his piece, start the CD, stop the CD to say more, start the CD, stop it again. 

You get the idea. 

He will often, after those stops and starts, decide to push the button that takes the CD back to the beginning of the song.

“I couldn’t hear it, Mom.  You were talking,” he explains.

ME???!!!

And Aaron doesn’t seem to notice at all my long sigh or my rolling eyes.  His eyes are staring straight ahead out the front windshield as he is absorbed in the song.  If the song is one of his very favorites, he will work his finger magic – rubbing his hands together and doing his unique finger work, sometimes very briskly and with a huge smile on his face.  Other times he is slow and methodical.  Here’s a video:

 

 

In the van, he usually holds his hands up high enough for people driving beside us to see his hands.  He honestly looks like a mad scientist hatching a new experiment.  I wonder what the other car occupants think as they see Aaron.

I wonder what lots of people think as they see Aaron.

I know what I think.  Well, actually, my thoughts depend on many things.  But on a normal day…normal for us, that is…I think that Aaron is pretty amazing and often very funny.

Autism is like that.  We have levels of amazement mixed with levels of laughter thrown in with levels of frustration.

Aaron is the constant.  He is the reason for these levels that we experience. 

Our constant…Gary and me…must be God and each other as we handle the other constant – Aaron.

So back to the Alabama music.  The first song was “Gone Country.”  Aaron was his usual excited self as he did his hand and finger thing while we drove down the road. 

“He’s gone country,” Jackson sang, “look at them boots.  He’s gone country, back to his roots.  He’s gone country,…”

Finally, Aaron said with some exasperation, “He keeps mentioning it!!”

HaHaHa!!! 

Aaron, of course, was paying attention to each word and those repeated words were getting on his nerves!

Now this is particularly funny to me because if there is anyone on planet earth who keeps “mentioning it,” it would be Aaron.

For instance, just after Aaron observed the repetition in Jackson’s song, we passed a little motel.

“That’s a motel,” Aaron flatly said.  I knew exactly where he was going with this because Aaron has observed that there are motels, but there are also hotels.  He has talked hotel and motel into the ground, but he can’t resist the urge to keep “mentioning it.”  We have looked up the definitions of motel and hotel, too.  Anything to explain it to Aaron, trust me.

I mean, who would even notice that?

Aaron would…and he did.

“There’s another motel,” he continued as we passed one. 

“There’s a hotel,” he then said seconds later.

And a couple miles down the road, I heard him soberly say, “Inn.”

Yes, we drove by an inn.  Great!  Now we have a new word in the mix!

Again, he didn’t notice me shaking my head.

There are times that Aaron does notice the messages that our bodies are sending.  Those times usually occur when Aaron is angry or on the verge of anger.  And often what he thinks he sees is nothing that we have done on purpose.  I probably see this more in the mornings than any other time.  That’s because if Aaron wakes up on the wrong side of the bed, he is hyper vigilant and sensitive to every word and every movement that comes from me.  I can be as flat in my reactions as possible, but invariably something will catch Aaron’s eye.

I saw this one morning when Aaron trudged into the kitchen, instantly saying that he was tired and that he didn’t want to go to Paradigm.  My affect was unemotional as I told him I was sorry, and then proceeded to get his coffee.  I have no idea what I did, but Aaron saw something.

“You make weird hand signals,” he commented.

And I knew that I needed to just go about my business, not responding or arguing or asking for an explanation.

I especially knew it later when in his bedroom Aaron got in one more parting shot as I walked away.

“Weird hand signals lady!” he said with more energy.

Talk about “mentioning it!”  Aaron won’t let these issues go easily, but if I comment it’s like throwing gasoline on a fire.  He drank his coffee while I got ready, and later he was fine.  No more mention of my weird hand signals.

And trust me, the irony was not lost on me as we drove to Paradigm later and he rubbed his hands together with delight during a favorite song.

Weird hand signals, huh? 

Aaron wanted to stay home one day this week.  He was tired after some intestinal issues the day before, but still he could have gone.  I didn’t push it, though, but he knew I wasn’t happy about it.

“You’re being quiet toward me,” he observed. 

It’s good for him to know that…good for him to see the effect that HE has on us…and good for him to verbalize it. 

The next day, he did go to Paradigm but he wasn’t very happy again first thing in the morning.  As he wearily talked to me in the kitchen, and I responded, he was eyeing me carefully through his tired eyes.

“Mom!” he blurted out.  “Stop doing things with your funny eyes!!”

I had to hide my funny eyes and face at that one.  I was thankful that he walked away so that I could at least smile largely. 

A trip to Dillon’s on our way to Paradigm that morning cheered him up tremendously.  Talk about things to notice and things to mention!  Dillon’s is full of possibilities.

And did he ever find a big one!  As I checked out his pack of gum he found, he had walked away…and soon I heard this.

“MOM!!  Can I put this in my bedroom??!!”

Everyone else turned with me to see Aaron carrying this huge thing.

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Others smiled and laughed with me, little children were looking up with wonder at loud Aaron holding this large spider, and the screen behind Aaron said, “Monitoring in Progress.” 

As if seeing this in person isn’t enough, we were also on the monitor screen!

So I paid for his gum, walked back to the Halloween shelf with Aaron, and together we also looked at all the varieties of spider skeletons, dinosaur skeletons, bird skeletons, and on and on…with lots of laughter mixed in!

Speaking of “mentioning it,” Aaron told Gary all about it and our next door neighbor and the boys across the street.  He talked and talked about it during the evening. 

Aaron thinks it’s ok for him to keep “mentioning it,” whatever “it” is at the moment.  Over and over and over and over, until Gary and I have glazed eyes and tired ears. 

But have I mentioned that Aaron sure can make us laugh and sure can make us see a side of life that we would otherwise miss?

THAT is worth mentioning over and over and over and over.

P.S.  By the way, the phrase “gone country” occurs 21 times in Alan Jackson’s song.  I know because I came home, looked it up, and counted it. 

You’re welcome, Aaron.     

Or should I say, “Thank you, Aaron!”  😊