I Love This Place!

For the past few weeks I’ve felt like I live in a snow globe.  I’m a figure that’s not fastened down, so when the globe is shaken I just fly all around with the snow.  Crazy, to say the least!

Gary and I knew that this was going to happen:

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Thankfully his foot surgery was planned and on our calendars many weeks ago.  We had time to prepare, even throwing in some minor things like having two bedrooms remodeled.  You know how that is.  Emptying the rooms of everything; deciding on what supplies to purchase; purchasing supplies; going through drawers and shelves and making multiple donation trips to Goodwill; the remodel itself (great job, Distinctive Designs!!); cleaning; putting everything back in the rooms; and heavy furniture up the stairs or down the stairs (thank you to our son, Andrew, home for Thanksgiving!).

Then there was decorating and preparing for Christmas with all the shopping and wrapping and mailing and cards and cooking yet to do.

Oh, and let’s throw in cleaning our big storage room two days before surgery!  Why not??!!

In the midst of it all, there is Aaron.  Aaron…trying so hard to maintain his normal.

Aaron’s normal is very vital to him.  His normal is as vital to him as breathing or eating.  Normal gives him stability and predictability, which he needs to maintain his balance.

Gary and I can roll with the flow, stressful as that flow may sometimes be.  Aaron…not so much.  When his normal flow of life is redirected…shaken like the snow globe…Aaron most often will react instead of handling the change.  Then whatever is causing his life change, as he sees it, becomes the enemy.

The enemy may be an event.  That’s why holidays, parties, trips, or other out-of-the-norm happenings can rock his world.  Aaron’s world is what he makes it.  His world is set and settled in his brain, everything in its place.  His days flow with an established pattern.  Can we all spell “ROUTINE?!”

The enemy may also be a person.  Any person who disrupts his pattern of life or his way of doing life becomes a huge problem to him.  Just ask his siblings about our Christmas family time every year.  We all know to expect at least one “Christmas Meltdown” every year.  The meltdown often involves some aspect of our family Christmas Eve Bingo game, which combines a party atmosphere with a lot of crazy thrown in from the annoying people who are on his turf and messing up his routine.

Autism at it’s finest, let me tell you!

When Gary and I arrived home the day of his surgery, Aaron was so very happy to see us.  I saw him scan over Gary’s huge wrapping with his ever-observant eyes, but Aaron never asked how the surgery went or how Gary was feeling.

Instead, Aaron talked up a storm as we got Gary settled in bed.  He ran up to his bedroom, returning with a soft blanket of his that he wanted Gary to use.  He ran outside in the dark and brought in our trashcans that were at the end of the driveway.  He kept looking for ways to help and was just SO happy to have us home.  I’m not sure how much of that happiness rested on the fact that his dad was all right or on the fact that we were home, at last, and now life could be back to normal.

Normal!  Right?!

Wrong.

Dad was in the guest bedroom.  Mom had to make trips down to Dillon’s for meds and food that sounded good to Dad and drinks to settle his stomach.  Dad wasn’t talking much and Mom was distracted.  People were calling.  Or coming to the house.

The morning after surgery, Aaron was getting edgy.  We knew it.  And Gary, bless his heart…in the shape he was in…managed to ask Aaron about his game he was playing.  Aaron was off and running then!  Talk, talk, talk!!  Talk about what he loved and what he understood and what mattered to him.

Honestly, Dad’s foot and leg all propped up on the living room couch didn’t matter to Aaron at that point.  How Dad slept didn’t matter.  Dad’s possible pain didn’t matter.

It seems heartless to us, but we know Aaron.  We know how autism is often defined by a narcissistic way of viewing the world.

We had some storms that first week.  It got rough.  My reactions weren’t always kind and loving toward Aaron.

Then after the snow would settle in our upside-down snow globe world, Aaron would look at us and immediately launch into talk of aliens and outer space and his latest movie and anything…ANYTHING…but real life and feelings and concern for us.  Then his anger would erupt if he sensed our lack of interest in what he was saying.

Just so exhausting.

One night after going around and around, Aaron regrouped quickly and stood by Gary in the living room talking about what show he was watching or game he was playing.  This was Aaron’s happy place with his captive audience.

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This past week, our second week post-surgery, Aaron came down with the crud bug.  Fever, cough, sore throat, aching all over.  A doctor visit, some meds, and he is better.  But again, a sick Aaron was a touchy Aaron.

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Until he thought of Christmas lights.

“Mom?” he asked on evening.  “Can we go look at the lights on the big white house?”

It wasn’t necessarily what I had time or interest in at that moment, but I saw the hope on his face and so off we went.  We saw the lights and then drove on to look at some other lights close by in several neighborhoods.

A couple nights later, after our neighbor mentioned a near neighborhood that was all decked out in lights, Aaron and I went out again.  House after house was glowing and flashing and bright and fun.  Aaron was mesmerized, leaning forward in his seat and very still, with a smile on his face.

“I LOVE this place!!” he finally exclaimed.

It warmed my heart so much for him to express such joy.

It warmed my heart to be the one who showed him this place he loved.

I’ll admit that sometimes I don’t love this place where God has us.  Life with Aaron can be very tiring.  He requires or demands things from us that we at times have no energy or interest in giving.

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This place isn’t always bright and pretty and rewarding and fun.  Sometimes we wonder why we’re here and what we’re doing.

But this place is where God has put us.

Aaron is God’s gift to us.

Sometimes we don’t feel that sentiment.  Gary and I get weary…lonely…at the end of ourselves.

I’m sure the man Jesus…God’s Son…felt all that and more, thousands of times over, as He walked this sad earth.

And because Jesus walked with us, He also understands our weaknesses and our human thoughts.  He is here with us to give us His grace and enable us to do the same with Aaron.

Aaron may not always love this place, either.  When his life is askew and he is miserable, loving this place is the last thing on his mind.

But may he know, when the snow is settled and the storm is over, that HE is loved.

Loved by God, as are we…and loved by his parents.

May this place, where we are at the moment, be a place of love when all is said and done.

And may your place, dear one…hard as it may be…be a place filled with God’s love for you and through you.

Bright like the lights of this beautiful season!

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In the Crosswalk

What is it with Aaron and crosswalks??!!

I was asking myself this question yet again yesterday as Aaron and I exited Wal-Mart.

I could also ask the question, “What is it with Aaron and Wal-Mart??!!”

Oh, the stories!

As we got out of the van yesterday, while we were still rather obscurely hidden in the parking lot, I reminded Aaron to pull up his jeans.  He did that while tucking in his shirt, but for some reason yesterday his shirt tucking had a rather dramatic and unsettling beginning.  It involved Aaron fully sticking his arm down the FRONT of his pants, getting his shirt settled down there, and then working his way around the remaining waistband.

I told you it was unsettling.

“Aaron, good grief, you don’t need to make such a production of tucking your shirt in,” I instructed him as we walked through the store and he decided that his jeans and shirt needed repositioning several times.

Several times in the same manner mentioned above.

When will I ever learn to quit walking ahead of Aaron in Wal-Mart?

You would think after the nightie story and the falling cereal display story and the singing story…that I would know better.

I was in full “ hurry-to-the-van-while-mentally-checking-off-my-to-do-list-and-plan-my-next-stop-for-that-one-missing-item” mode as Aaron and I exited Wal-Mart.  Which means I wasn’t paying attention to lagging Aaron.

Instinct kicked in, I guess, because I turned around IN the crosswalk, with cars and staring drivers on either side of us, just in time to see Aaron pulling up his jeans and tucking in his shirt.

And doing it in that same disturbing manner!!!

IN THE MIDDLE OF THE CROSSWALK!!!!!

“AARON!!!” I calmly insisted, “STOP IT!!”

I said this while continuing to walk as if nothing was amiss at all.

Aaron knew then that he had erred, so he scurried up beside me as we left the embarrassing crosswalk.

“Well, I had to pull my pants up!” Aaron explained.

“In the middle of the crosswalk?!” I asked.

“What’s wrong with that?” Aaron questioned.

I just took a deep breath, reminded myself not to shame Aaron, and proceeded to once again remind him of how some things are best done in a less public setting.

Trust me, many of Aaron’s actions are best done in a MUCH less public setting!!

But Aaron truly doesn’t have a concept of social norms like you and I do.  No amount of proper parenting, wise advice, careful instruction, and repeated modeling of acceptable behaviors has…or ever will…change him.

I mean, he does show some improvements in some areas.  He hasn’t made his loud farting noise with his mouth in the middle of Wal-Mart in some time, come to think of it.

He can be so funny, but he can also be so exhausting.  The exhaustion is mostly mental for me and Gary with some emotional thrown in as well.

A big part of it is Aaron’s talking.  He loves to follow us around the house, sometimes a LOT, and talk…always a LOT!!

Our son, Andrew, drove home from Indianapolis for Thanksgiving.  Aaron had fresh ears to listen to all his talking, but he also had competition.  The competition comes into play for Aaron because now he must share our attention.  He is not the only person in the house, and he must share his podium with his brother.

This is difficult for Aaron, try as he might to be patient.  Another issue is the topic of our conversations.  Aaron’s topics are typically about aliens, Star Wars or Transformers or Terminators or whatever else he is watching, relational issues at his day group, and more about aliens and outer space and droids and what-do-we-think about aliens and outer space and droids, etc., etc., etc.

All of us are like the drivers in the crosswalk, where Aaron has the right-of-way and we must wait for him to cross.  No amount of confirmation from us toward Aaron can change the fact that his mind-numbing conversations dull our responses to him…and he senses this.

He also truly wants to be the ONLY one talking, and this is where we must step in and remind him to take his turn.  This creates anger on his part and resentment toward the person who has pushed him off his podium, albeit unwittingly, but done none-the-less.  We all understand this about Aaron, and even expect it, but still it’s tiring.

On the day before Thanksgiving, Gary got home early from work so we along with Andrew picked Aaron up from his day group and went out to eat in Old Town.  Aaron had a seizure early that morning, and another one about an hour before we picked him up, but it didn’t dull his tongue.  Not one bit.  😊

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But my favorite picture of our Thanksgiving was when Aaron waddled into the kitchen wearing his shark blanket – a gift from Andrea and Kyle for his birthday – and proceeded to continue talking.  It was just hilarious to see him standing there, oblivious to how he looked, and still talking up a storm.

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Again, we were trapped in the crosswalk…all of us with hidden smiles on our faces…and Aaron unaware of how comical he looked.

Living with Aaron isn’t always easy, especially when we’re already stressed about other life events and concerns.  Having to stop on a busy day for people in the crosswalk isn’t always fun, either.  So, when we’re rushing to get ready for the holidays in the midst of having some remodeling done, with lots of furniture to move around and mess to clean up – thanks for your awesome help, Andrew!! – and Gary is having foot surgery on Monday and will be incapacitated for a long time in a house full of stairs!! – and there’s decorating and shopping and surgery prep and just LIFE!!…

Those crosswalks can be very, very irritating and draining.

It helps to be able to smile and sometimes laugh and to think of Aaron in his shark outfit, not to be derailed from talking!

The pulling up his pants thing, though.  Some things are best forgotten.

My apologies to all the drivers at that crosswalk.

It was memorable, I’m sure.  😊  😊

Aaron usually is.

 

Joy and Crescent Rolls

My phone rang yesterday while I was working in the kitchen.  Of course, it was Aaron making one of his several calls from his day group…calls in which he updates me on his doings, reports good times or bad times with friends there, asks me when I’m coming to pick him up, and stresses that he wants me to come EARLY!!

Since this day was Friday, and since Friday is the day we usually have a special meal of Aaron’s choosing, this phone call greatly concerned food.  He also wanted to know if we were going on our Friday Wal-Mart trip to buy him his “end-of-week and beginning-of-weekend” snacks.

“MOM!!” he began.  “Are we going to Wal-Mart after you pick me up?!”

I assured him that we were.

“MOM!!” he continued.  “Can I get some Pillsbury Crescent Rolls to have for our supper?”

I assured him that we could.

“MOM!!” he added.  “Not the kind in the box but the kind that you bake in the oven.  Pillsbury Crescent Rolls!”

I assured him I understood.

And then he chuckled…his deep-throated chuckle of pure delight.

Pillsbury Crescent Rolls filled him with the greatest joy at that moment, a contagious joy that was passed on to me as I joined him with a laugh of my own.

One thing about Aaron that continues to teach me so much about handling life is his joy in the simplest of things…things that I often take for granted.

I typically don’t play Christmas music until after Thanksgiving, but for the past few years I have caved somewhat on that standard.  Two days ago, while cooking supper, I turned Pandora to a Christmas station.  Music has always, from my childhood, been a huge part of my life.  I listened as I prepared our meal, waiting for that illusive “Christmas spirit” to wash over me.

Instead, though, I was soon brushing away tears.  Silent Night was playing, and that song above all Christmas songs, reminds me of times past and of my parents and of how I miss them and of so many other memories.  Sweet memories, but memories now…people and events of the past, not the present.

And the present…the now…is where I wish they still were.

This Thanksgiving and Christmas season, above all other seasons…with its music and traditions and memories…is so very full of emotion and expectations.

Expectations that often don’t materialize and so leave us with sadness.

In November of 2004, my parents called with the unexpected news that dad’s cancer was no longer in remission.  Doctors had found inoperable cancer in his liver.  All our close family was devastated at this news.  Gary and I decided to quickly change our Christmas plans that year.  We loaded up our van the next month just before Christmas and traveled the long distance home to West Virginia.  All of us wondered if this would be Dad’s last Christmas.

This long, sad trip was very hard for Aaron in all the ways that change and travel have always been hard for Aaron.  The most stressful aspect for Aaron, though…for all of us…was the raw emotion that we couldn’t hide.  Aaron doesn’t like crying and on this visit we couldn’t successfully hide all our tears from him.  The early morning that we left Mom and Dad’s to return to Kansas, we all stood in a circle as we held hands and prayed.  And we all cried.

Except for Aaron, who sat off to the side rocking in a recliner and saying over and over, “Crybabies!!  Crybabies!!  Crybabies!!”

To borrow an Aaron phrase, it was half sad and half funny!

Yet a very sweet moment with Aaron happened during that trip.  As Mom and Dad opened their Christmas presents, they unwrapped a framed poem of sorts that someone had given them.  Aaron saw it and he held it carefully as he began to read.  We all sat still and listened to him read every word in his monotone voice.  It was good that he was looking down and didn’t see my parent’s tears, and ours as well.

 

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I have this precious piece now and was looking at it the other day as I did some sorting.   I thought of it as I listened to Silent Night and my heart filled with emotions about what used to be and what isn’t now.

I know that I have a choice to make.  I also know what God has told me to do.

“Give thanks in all circumstances, for this is the will of God in Christ Jesus for you.”  (I Thessalonians 5:18)

As the poem said, happiness is all around us.  I like to substitute the more meaningful word “joy” for happiness, for joy is a fruit of the Spirit in my life and is possible no matter my circumstances.  But whichever word you use, know truly that there is joy and happiness all around us, every day, in sometimes the smallest of ways.  Yet small things are huge when we look at them through the lens of thankfulness.

Over the years, life changes…a lot…but joy with a thankful heart should be a constant for us.

 

Aaron has seizures, but we are thankful for good doctors:

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Thankful for yummy and very cheesy chicken enchiladas:

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Thankful for God’s amazing creatures in our own yard:

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And thankful for Pillsbury Crescent Rolls!

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Hey, It’s My Birthday!!

We just finished celebrating Aaron’s 35th birthday.  We had three days of birthday events, full of fun and loaded with Aaron’s exuberance.  There aren’t many 35 year old’s who would embrace their birthday with as much joy and pure excitement as Aaron did.  His birthday is one of those times that we fully see how unencumbered Aaron is with adult responsibilities and burdens.  35 doesn’t seem old or worrisome to him at all.  He’s all about HIS day and all the fun it holds!  He’s very much like a kid, and everyone around him smiles at his delight.

Aaron begins planning his birthday months before the actual date.  I’m not exaggerating.  He talks and talks about his plans.  Can we go here?  Can we do that?  And often, he doesn’t ask us before he starts inviting people to come to our house or to eat out.  It’s easy to be exhausted long before the birthday celebration even occurs as we try to keep up with him and his grand plans.

His birthday was this past Friday.  On Thursday, he stayed home from his day group.  He helped me make lots of cupcakes for his day group to share the next day.

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We also made lasagna for some of his friends to have on Thursday night.  We loaded up the van with lasagna, garlic bread, cupcakes and drinks before driving across town to the residential home of some of his day group friends.  All girls, by the way!  😊

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On Friday, Aaron carried his cupcakes into his day group…chocolate cupcakes with chocolate icing and sprinkles, per Aaron’s wishes.  At the end of his day, Barb…dear friend, second mom, and Paradigm manager…brought Aaron to meet Gary and me at Texas Roadhouse for his birthday “eating out” supper – Aaron’s choice once again, of course!

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Oh my goodness, his excitement was almost palpable!  He could hardly stop laughing and talking, and rubbing his hands together, in complete happiness.

“It’s my birthday today!!” he immediately told our server.  “Can you sing to me?!”

Our sweet server laughed as well and said of course.  She mentioned the saddle, which we had to explain to Aaron, and which he agreed to our surprise to do…but later he backed out on that saddle business.  He wanted the largest sirloin, but we insisted on the next size down.  He barely quit talking and eating.  He was large and loud and very, very happy!

His gift bags from Barb, and from Casady – Barb’s daughter and another very good friend – were perfect for Aaron because they know him so well.  And they love him, which he fully knows.

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At home later, he opened more gifts and he talked to family…and he loved the shark cuddle blanket from Andrea and Kyle!

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Then on Sunday evening, we met his special friend Rosa for their traditional birthday dinner at Chili’s.  Again, Aaron announced his birthday to our server and asked if they would sing to him and bring him ice cream with chocolate syrup.  Look at Aaron’s happy face when after dinner several of the staff sang and clapped and made Aaron’s final birthday celebration complete.

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Rosa ran to their car as we left, bringing out her doll head that she loves so much, while Louise and I laughed and laughed.  We love Aaron and Rosa’s friendship!

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My heart was warmed later when Louise told me about how she and Rosa were looking at calendars to buy for Aaron.  Aaron loves animal calendars, so Rosa eyed each of the three that Louise showed her.  Rosa instantly chose the buddy calendar that shows dog and cat buddies for each month.  Isn’t that so sweet?

I’m very thankful for each of Aaron’s friends and family that love him.  Every text, Facebook message, phone call, and gift to Aaron was also a very deep gift to me, as well.  I loved seeing Aaron so happy, and I love seeing Aaron BE loved by so many precious people in his life.

Sometimes it’s easy to feel alone when you raise a child with special needs, especially when they are fully adults yet, as in Aaron’s case, still so fully dependent on the help he needs from the family and staff that surround him.

Easy to look at others who are Aaron’s age, or much younger, who are finishing school and getting jobs and raising a family.

Those thoughts for me are fleeting, though, because I know the danger they carry.  Aaron is Aaron, created by God, and my responsibility is to love and care for him – not to regret that he isn’t someone else.

Barb’s daughter, Casady, a kind soul who loves Aaron to pieces, wrote this in Aaron’s card:

“Happy birthday, buddy!  Thanks for making me see all the sides of life.   Love you so much.”

 Those words seem to just go over Aaron’s head, but not mine.  Her words go straight to my heart and come out from my eyes in tears that I don’t let Aaron see…or he would call me a crybaby.

But oh, life really is so much more than our routine and our version of “normal.”  Trust me, Aaron shows us sides of life that we never even thought of!  And other sides that we would like to forget!

Yet Aaron also shows us how much fun it is to relish routine and special days and music and warm blankets and coffee and cows and horses and bugs and steak and movies and shopping and dogs and cats and milkshakes and sharing and pennies he finds on the ground.

I sometimes stop and look at Aaron when he’s doing an Aaron thing, and my heart swells ‘til it almost hurts.  He is so unique, complicated, hilarious, maddening, and upsetting.  All the sides of Aaron are also the sides that all of us have, but Aaron doesn’t often have the ability to hide them like we can.  They’re out there for all to see…and to hear!

And this morning, I heard a seizure a little after 5:00, and another just before 8:00.  Then one that he’s only had once before, back in April – long and strange and scary.  This is the side of Aaron’s life I dislike the most, but it’s a side we must handle and manage as best we can.  I handle it by being thankful in the many ways that God brings to my mind, and by knowing as well that God is there for us and for Aaron with His sovereign protection and grace.

The sides of Aaron’s life…the good, the bad, and the sad…are all wrapped up like a birthday gift that God gave to us the day that Aaron was born.  It’s up to us to relish all of who Aaron is, even the hard sides of Aaron; to thank God for our special gift; and to care for him in all the ways he needs.

Every side of Aaron…every day.

Hey, it was Aaron’s birthday!!

And I’m happy about that!!

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A Sweet Touch from God

Aaron saw the commercial for Pumpkins at the Park, and soon after he was telling Gary and me all about it.  I had already seen posts about the event on Facebook and had told Gary that we should take Aaron, so with Aaron’s excitement already abounding I knew it was a match made in heaven.  Tickets were ordered and plans were made to drive the mere mile and a half up the road to Tanganyika Wildlife Park on the following Saturday night to experience some pumpkin Halloween fun.

Aaron, who must plan multiple details before any occasion that he will attend, began to ask questions and to get his mind organized for our fun night.  His list included:

  • Will I need a coat?
  • Will I need gloves?
  • Will I need a hat?
  • Will there be lots of people there?
  • Will there be food to eat?
  • Will the animals be out?
  • What time will we leave?
  • What time will we get home?
  • Do we have tickets?
  • Where are the tickets?
  • Mom, why are you sighing?

I answered all but the last question…multiple times.  Which is why I was sighing, but Aaron doesn’t know that.  It wouldn’t matter if he did.  He just knows Mom’s weird that way and by the way, “Will I need a coat?”

Sigh.

But this is Aaron, and we totally expect the repetitive questions and ultra-planning.  His comfort level depends on it, and trust me, we want his comfort level to be high…especially since our comfort level is so closely tied to his.  Like, totally tied to his.  COMPLETELY TIED!!

OK.  Moving on.

As Gary and I climbed into bed on Friday night, the monitor beside us on my nightstand turned on to listen for Aaron, I told Gary that I sure hoped Aaron wouldn’t have a seizure during the night.  You see, a nighttime seizure nearly always means a daytime seizure or more the following day.  I didn’t want Aaron’s much anticipated Pumpkins at the Park to be ruined.

Wouldn’t you know that at 11:58 I heard a seizure.  My heart dropped more than it usually does.  Why on this night of all nights must he have a seizure?  I was so sad for Aaron as I went to help him, and then returned to my own bed when the seizure was over, and Aaron was safe.

Surprisingly, there were no more seizures that night.  But in the morning, Aaron’s eyes and actions showed that he was still feeling the effects of just that one seizure.  I feared more would certainly come.  He couldn’t even stay awake for his coffee, and later slept on the couch for awhile.

Still, no seizure.

When he napped in his bed later that afternoon, I thought for sure he would have one because that is what’s typical.  I listened closely as I carried the monitor with me around the house.

And still, no seizure.

All day long, as we worked outside and as Aaron hung out with our little neighbor’s boys next door, no seizures.

And that evening, there we were at Pumpkins at the Park.

Aaron was totally ecstatic, and that’s no exaggeration.  He didn’t stop smiling the entire evening.

We went from this:

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To this:

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Look at his smile!!  Isn’t that just awesome?!

He loved every single part of the park that evening.  The scary:

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The spooky:

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And the sweetness:

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Speaking of sweet, I especially love this sweet picture of Gary and Aaron walking on the path.

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And I love the sweet touch from God we all felt on that day.  It was sweet to spend that time together and not have it ruined by seizures.

Sweet to have this special memory tucked away in our hearts.

Thank you, God, for such a sweet touch from You!

 

 

 

Fixing the Broken

Last night I felt like this:

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Mangled.  Broken.  Greatly in need of repair.

These were Aaron’s glasses a couple weeks ago after an incident at his day group.  Mixing all the various special needs can at times be volatile.  Even I, who have dealt with many pairs of broken glasses, was surprised at the level of damage done to this pair.  I honestly wasn’t sure that they could be fixed.

I took the rather hopeless mess that used to be glasses into our eye doctor’s office a couple days later.  I hoped that maybe, just maybe, they really weren’t beyond repair.  The kind technician couldn’t hide the look of surprise on her face, which didn’t fill me confidence that anything could be done for them.

Imagine my surprise, though, when before long she returned with this:

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WOW!!  Talk about a miracle re-do of what I thought was hopeless!  She received my profuse thanks with a smile on her face and the comment that she loved a good challenge.  I’m thankful that she did, indeed!

Being the mother and caregiver of an adult special needs “child” with behaviors can be exhausting…physically, mentally, emotionally, spiritually.  I believe that about covers it.  And while I don’t want to come across as complaining, facts are facts and truth is truth.

If there’s one thing I’ve wanted to be on this blog, it’s truthful…truthful without being unkind to Aaron in my honesty.  Talking about being truthful, Aaron is just that…at least in his mind.  He has few filters, and totally does not get social norms.  He is often unaware of other’s feelings.  He gets stuck in his own mind about certain issues and is truly stunning in his inabililty to switch gears and judge those issues with good reasoning.  His own comfort is paramount to him, most of the time, so if his comfort is interrupted or his wishes unmet, we are often met with his anger.

And I get tired.  I get angry.  I did last night, when Aaron who had been happy decided to be rude just before bed.  He and I didn’t have our normal cheerful bedtime routine.  He was still out of bed, on his computer, when I went to bed.  I didn’t even challenge him.  I have no idea when he went to sleep.

I spent time with the Lord this morning, reading about the compassion of Jesus and knowing that I needed that same compassion for Aaron.  Somehow, it’s easier to show compassion for ones I seldom or only occasionally see.  Showing that similar level of compassion for Aaron can be very hard to do over the long term, day after day.

I was very surprised this morning to hear Aaron’s floor creaking before 7:30. Most mornings I must roust him out of bed…very unhappily on both our parts, I might add.  I thought this morning he would definitely be a hibernating bear, but no, he was awake and downstairs early.

He knocked politely on the bathroom door, and when I opened it with some dread, I was so relieved to see him with bright eyes and a sweet smile.  He even received the hug I offered!  We were off to a good start!

We sat in the living room, enjoying the warm fall decorations and soft twinkling lights.  I had intended to sit there and pray, but sitting with Aaron was important, I knew.  We talked softly about some of this and some of that.  Then Aaron decided that he could take his pills, but I reminded him that it was too early.  He wondered why, and once again I explained how he really should take them about 12 hours apart.

“So, Aaron, it’s nearly 8:00 right now,” I began.

He immediately looked at his left arm, pushed up his sweater sleeve, and gazed down at his wristwatch perched halfway up his arm.  I just watched with a smile on my face, waiting for what I knew was coming.

“It’s not 8:00,” he blandly stated as he stared down at his watch.

“Well, I just meant that it’s ALMOST 8:00,” I explained.

“It’s 7:41,” he flatly continued.

Gone was the lesson on the 12-hour rule.  Gone was my caring at all at that point about the 12-hour rule!  In its place was my laughter, deep from inside…much needed laughter.

And Aaron tolerated my laughter, even though he had no idea why the time of 7:41 made Mom laugh.  Many times, Aaron gets angry when I laugh, so I don’t…until he is out of earshot.  But today Aaron let me laugh.  This was a gift.

Later, we sat at the table where Aaron ate a plate full of fried eggs with the yellow hard the way he likes them and where he talked and talked and talked…about separatist droid armies and Trandoshans and commandos and clones…and anything but heart matters.  Or the 12-hour rule.

But it was good.  Very good.

It was our normal.

And it was a gift.  A gift from the same God Who also fills our hearts…my heart…with love and compassion for our Aaron.

I know all too well that we’ll have this again:

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But I also know that we’ll have this:

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Thanks to God who fixes our broken!

“He heals the brokenhearted and binds up their wounds.”  (Psalm 147:3)

 

 

 

Cool Aaron

My phone rang the other day and even before I looked, I pretty well knew it would be Aaron making his daily call from Paradigm, his day group.  Yep, there was Aaron on the other end of the call, talking the second I said “hello.”  He was excited and laughing about Chris, one of the Paradigm staff.

“Mom!!  Me and Chris are playing a game where I can’t talk!”

Well played, Chris, well played!   I just thought this.  I didn’t say it to Aaron.

“But Aaron,” I replied, “you’re talking now.”

“HAHAHAHAHAHAHA!!!!!”  Aaron bellowed.  “I guess I forgot the rules!!”

I laughed as well.  In fact, it felt very good to be laughing with Aaron.  I never know when I pick up the phone in what condition I will find Aaron.  Happy, sad, mad, crying, excited…I never am sure, so it’s with some dread that I answer his calls.

I had reason to feel dread this week because Aaron has been in a state of some anger and belligerence for awhile now.  We’re not totally sure of the why, but we are totally sure that his ups and downs are tiring to us and to his staff and friends at Paradigm.

This past Monday morning was rough at home.  I always let Aaron decide if he’ll go or not, knowing that forcing the issue is a recipe for disaster.  But Aaron also knows that if he does go to Paradigm then he gets extra treats and his meal of choice over the weekend.   He nearly always decides to go, but my reward system can also come back to bite me because the reason he goes is sometimes just for the future reward, and this stresses him to the point of bad behaviors.

Sometimes it’s just a perfect storm for a stormy day from Aaron!

Monday was that day.  Anger at home…then a calming…a fun ride to Paradigm because his music cheered him…and my last admonishment as he left the van.

“Aaron,” I said, “try to have a really good day.”

“I can’t make you any promise,” he seriously replied.

And I had to laugh at that as he walked away.  He was borrowing my often-used phrase when he tries to pin me down to doing something at a certain time, and I tell him I can’t make a promise.  How well he listens and mimics when it suits him!

And boy, it’s a good thing he didn’t make a promise to have a really good day because it was anything BUT a really good day!!  I’m very thankful for the patient staff at Paradigm!

Tuesday saw more issues at home, though not as severe as the previous day.  I was encouraged by his good day at Paradigm, but our evening at home hit bottom again.  He was not happy that Gary and I talked to our daughter on the phone before supper, in our bedroom with the door locked so that Aaron couldn’t come in and interrupt.  Aaron was very rude before supper and during supper.  Tough love ensued, ending with Aaron’s Cheddar Pasta Salad being taken away by Dad before he was through…and all his snacks being bagged up by Mom and put inside the locked van.

Well!!

Aaron finally calmed down as the evening progressed.  He turned a corner, looked at me as we watched a show, and surprisingly…and nicely…said, “Mom, I’m sorry.”

“Thank you, Aaron,” I replied.  “I’m sorry, too.”

“I like you, Mom,” he quietly said.

“I like you, too, Aaron,” I affirmed.

But the snacks stayed in the van, a test of his sincerity.

The next morning, yesterday, saw him irritable again and not wanting to hurry out of bed or hurry to get himself ready.  I don’t tell him to hurry – I’ve learned better – but he knows the underlying theme.

“Don’t rush me!!” he stated.  “I have no time to hurry!!”

Oh, Aaron!  I want to both laugh and cry when he talks that way!

So, this morning, we were getting ready to go to his yearly support plan meeting.  Again, he was sleepy and frustrated, and dreading this meeting.  It helped that we meet at Carlos O’Kelly’s and get to eat out, but Aaron still does NOT like meetings.  He wonders if he can stay at Paradigm, can he stay at home, and all sorts of other concerns.  I felt bad that he was scared so I assured him that things are staying the same for now, but still he was on protective mode.

“Mom, I’m telling them that you and Dad are starving me!” he declared, threatening to tell them about the locked away snacks.

Again, I didn’t react and told him he had every right to do just that.  But at the meeting, as he chomped down salad and chicken fingers and French fries, he was happy and loud and talked away at everything except his starvation.

We’ve been very weary lately, honestly.  I don’t know if his mood swings are because of medicine side effects…because of strong low fronts moving through this week…because of seizures last week…because of who knows what??

As we signed papers today, I laughed at Aaron’s signature.  This is his very favorite way to sign his name.

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Aaron has such a very hard time playing by our rules…the societal rules that dictate how we talk to others and respect others and give and receive love.  Try as we might, we cannot get him to tell us why he’s unhappy…at least not if his emotions are coming from someplace other than the fact that his snacks are locked away or he can’t stay home on his computer all day.

Aaron can convey plenty of facts.  What he can’t convey easily are his emotions…his deep-seated reasons for his angry actions.

Gary and I know this about Aaron, but sometimes it’s hard to remember it in the heat of battle.  That’s when we need to back away…take a deep breath…lean on each other and God…and remember one more thing.

Aaron Moore is cool.

He’s cool when he tries to sneak another notebook in to Paradigm to give away, knowing he’s not allowed to do that.

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He’s cool when he leans against my legs after he’s been so angry.

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He’s cool when he’s trying to feed an ant on the table at a restaurant.

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He’s cool when he’s giving and sharing.

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He’s cool when he’s “drying the bubbles off,” as he says.

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He’s cool when he’s playing a trick.

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He’s cool when he says, “MOM!!” at the grocery store and laughs and laughs at my reaction to him holding my LEAST favorite creature!!

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And in so many other ways, our unique Aaron is very cool, even when he makes me lose mine.

Let me remember that, Lord, in the heat of the moment.

Let me remember that you crafted and created Aaron’s coolness.

Aaron Moore IS cool!

 

Mother’s Beautiful Hands

This past May our mother passed on to heaven.  We said our final earthly goodbyes to her on May 8, and thus began our year of those firsts.  Many of you know them…those first special days that you spend without that special person.  Our first “first” came quickly.  Mother’s Day occurred just two days after Mom’s funeral.  Isn’t that just like life?  Life doesn’t wait on us to get ready for the things that are hard.  They happen whether we’re ready or not.

Our next first is tomorrow.  Tomorrow is Mom’s birthday.  She would be 89 if she had lived to see this day.  I know, though, that none of us wish her back.  We had been saying goodbye to her for a long time as the symptoms of Alzheimer’s overtook her brain and body.  What a sad disease it is!  Alzheimer’s takes a person slowly, robbing them of their essence and their personality and their memories.  I’ll never forget going to see Mom last year, in June of 2014.  When Gary and I entered her assisted living apartment with Jan, Mom not only didn’t know us at all, but she didn’t even show any joy that we were there.  She would usually at least act happy to have visitors, but on this visit she was completely devoid of even that.  For the first time, I did indeed feel like a visitor…..and an ignored one, at that.

Our visit that June was also the one where we gathered around Mom in the kitchen at Jan’s house as we sang hymns. Mom sang with us, surprising us all.  That time was deeply precious to each of us, including Mom.  Her eyes lit up as she sang.  She smiled and she tried to express what she was thinking about each song.  She remembered words very well, and we knew that each song resonated with her deep in her heart and mind.

 

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Before we left that evening to go on our separate ways once again, Mary Beth wanted us to all put our hands on the table together and take a picture.  I’m so glad we did that.  Something about that picture is so personal…so tender.  There is our mother’s hand, nestled among her children’s.  Her hand shows the effects of age…of hard work…of arthritis.  But her hand is beautiful.  And us…our hands also show the signs of age that are creeping upon us.  You can see some spots…some lumps on our joints…and several of us have that funny little finger that Mom had.

 

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I look at that picture and I think of how Mom’s hand was always in our lives.  From an early age her hands were ever busy with caring for us five children, and for Dad.  I remember her hands cooking and baking, sewing and cleaning, caring for sick children and looking after busy children.  She used her hands to show us how to make little troll doll clothes out of felt while she sewed real clothes for us to wear.  She used her hands to let us turn the handle on the food chopper as she made Cranberry Salad for Thanksgiving.  She used her hands to fill our table with huge baking sheets of homemade rolls while she pinched off little pieces of dough for us to happily eat.  She used her hands to teach us how to set a table and how to wash dirty dishes after loading the sink just right.

Her hands wiped our tears…and sometimes caused our tears as she spanked us for disobedience.  Her hands worked to grow beautiful flowers and delicious vegetables, which she froze and canned and cooked and shared with others.  Her hands taught us how to do the laundry and to fold the clothes correctly.  Her hands taught us to iron whatever she had placed in our four baskets, each basket bearing the name of one of us girls.  Where was John’s?  J  Her hands taught us how to clean a house, how to hem a dress, how to play some of her favorite card games, how to make a bed the RIGHT way, how to take care of our varied pets, and how to plan the many practical jokes for which she was famous.

Perhaps the most important use of her hands was when she would open her Bible in the early mornings as we all sat around the breakfast table.  Dad would have already gone to work, so before we left for school, Mom would be sure that we all opened our Bibles as she did.  She would read from the Our Daily Bread devotional book, reading the selected Bible passage first and then reading the devotion before we prayed.  Her commitment to God and to us was never more evident than during that precious time together every morning.

Her hands made each of our wedding dresses and bridesmaids dresses.  Her hands cared for us after each of our children was born.  Her hands loved and doted on her grandchildren and great-grands.  Her hands knit literally countless numbers of Christmas stockings for family, friends, friends of friends, friends of family, pets……you get the idea.  Her hands quilted each of us a totally handmade quilt after she retired.  Then those always busy hands made, again, an untold number of quilts for others to enjoy.  Her hands took meals to shut-ins.  Her hands stuffed envelopes for the Crisis Pregnancy Center, for missionaries, and for church.

Her hands cared for Dad for eight years as he fought cancer.  And it was her hands that he wanted to scramble his eggs that he loved during the final few weeks of his life.  Only her hands would do, and I understood that totally as I stepped aside and let her do this thing that she loved so much.  It was in their little kitchen that I noticed her hands doing things differently than she had ever done…and I knew that the Alzheimer’s was lurking, waiting to overcome her in the following years.

Her hands worked hard to care for Dad during that final month that he lived.  He preferred her hands above all others, but he knew that she was struggling, and so he allowed Jan and I to help as well.  But it was Mom’s hand that he reached for as they sat on the couch.  It was Mom’s touch that comforted him when he was so sick.  It was Mom’s hand that he held as he lay in his hospital bed…..her hand reaching through the bed rails as she lay alone in their bed beside his hospital bed.

 

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Jan took one last picture of Mom’s hands as she lay dying this past May.  There they were, crossed on her lap, still and un-moving.  She was nearing the end of her time on earth.  Her hands, though, spoke volumes to all of us.  I’m again so thankful for the picture that Jan took.  Her hands showed the evidence of years of love and work.  Now her hand’s work was done.  It was time for her to rest.

 

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But the work of her hands will never be done.  Her work in our lives does indeed live on.  So much of who we are and what we are is because of her beautiful hands in our lives.  None of us King children would be who we are today without the influence of her godly, kind hands.  Then our children, and their children, show the impact of Mom’s hands.  What a treasure is to be seen in those soft, wrinkled hands!

I’m pretty sure that her hand is now holding Dad’s hand in heaven.  I doubt that they’ve let each other go since she’s joined him there.  Unless there’s work for her to do, and then I can totally see her using those hands to make something or to keep things straight.  I wonder how many quilts she’s made by now?

The Proverbs 31 woman was described as one who works with willing hands.  Our mother did just that, and for the rest of our lives we will benefit from her wonderful, willing hands in our lives.

Happy Birthday, Mom.  Thank you for your beautiful hands in our lives.  You will always be loved.

 

Let’s Go Racing!

Our son, Andrew, works for a professional NHRA race team.  He works for Don Schumacher Racing and is on Leah Pritchett’s team.  It’s an unusual, hard-working, and interesting life.  Gary and I subscribe to the NHRA live feed so that we can watch each qualifying and elimination run at every race from February – November.

 

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This weekend the big Indy Nationals Labor Day race is being run for its 65th year.  It’s a huge event!  And you can bet that Gary and I will be watching each run.  One qualifying run was on Friday…two runs today…two more tomorrow…and the big race will happen on Monday.  It’s so much fun to be able to go to the races while we’re at home!  And even more fun to see Andrew!

 

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Leah and the team won the race at Brainerd two weeks ago.  Here is a picture of Andrew and Leah with the coveted Wally trophy.

 

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We wish all of them the same success this weekend, for sure!

Someone else will hang out with us, too, for each run.  Aaron!  Now this is unusual because Aaron used to care nothing for racing.  Part of that was lack of interest in the sport.  But a huge part of his lack of interest was also due to jealousy.

Aaron has struggled with resentment toward Andrew for years.  I think it’s partly because they are both guys.  Aaron wanted friends like Andrew had…wanted to drive a truck like Andrew did…and craved the attention Andrew got when he told his cool stories.

Therefore, when Aaron would see Gary and me watching a race, he would say, “I don’t care about that stupid race!!”  And off he would stalk, mad at us for the time and attention we gave to the race…and mostly to Andrew.

Something changed, though, a few years ago.  Aaron took an interest in racing and so he would come down to Gary’s study to join us.  Granted, sometimes his head is buried in his Nintendo DS, but he is still listening and soaking up knowledge about drag racing.

It was amazing and wonderful to hear Aaron talk to Andrew on the phone.  “Hey, Andrew!!  I watch you on racing!”  And to hear Andrew so sweetly engage with Aaron, and to say he’s glad he gets to watch.

Our little neighbor came over a few weeks ago to watch a run with us.  Keegan is in the first grade.  It was so cool to hear Aaron answering some of Keegan’s questions about drag racing.  Things like the difference in Funny cars, like Andrew used to work on:

 

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And Top Fuel cars, where he is now:

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It was also fun to hear Aaron talk about Leah Pritchett, the driver of the car where Andrew is now working.  This has been one of the funniest and sweetest aspects of Aaron’s interest in racing.

Leah is very pretty.  Aaron has never mentioned before that a girl is pretty.  He might talk about her hair being “yellow”…or her clothes that are weird…or her weight!!…or any number of other aspects that often require our correction.  But being pretty?  Nope.  Aaron has never seemed to notice.  Until Leah…

The first time he saw her in a close-up shot on our television, Aaron said, “She has nice eye polish!”  😊  😊

Gary and I stifled laughter as we looked at each other in shock.  Aaron noticed her eye make-up?!

When I was able to meet Leah in person two years ago at the Houston race, I told her about Aaron and what he said.  She loved it!

Aaron has broadened his appreciation of Leah, though.  He says that she is beautiful, and that he wants to marry her…which is to Aaron a normal connecting of the dots, not at all unusual or extreme.

This past year, in Houston, I asked Leah to sign one of her posters for Aaron.  She was glad to do so.

And Aaron…he was BEYOND happy when I handed him his poster, signed – LOVE, Leah!!

He has showed this poster to all our neighbors and to many others who have come to our house.

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I told Leah about this at the Topeka race, about how happy Aaron is to have her signed poster.  It made her smile, and then to ask when she would see Aaron.  But taking Aaron to an actual race…that’s a whole other challenge!

In all this racing interest, the best part has been to watch Aaron care about Andrew’s life and his job, and for the bond that has been formed between them.

“My brother is a drag car racer worker!” Aaron tells everyone.

That’s the best win-win, in our book.

But we would still love to see another Wally this weekend!

 

A Normal Thing

One evening we were eating supper and Aaron was talking.

That sentence makes me laugh because I could just leave the first part blank – to be filled in, you know – because any place and any time and any meal and absolutely ANY scenario could easily end with:  “…and Aaron was talking.”

After all, the name of this blog IS, “He Said WHAT?!”  I write about lots of other things, too, but I started out wanting to convey the amazing way that Aaron expresses himself.  Sometimes he is not only amazing.  He is also funny, maddening, complex, insulting, and so many other adjectives.

Anyway, we were eating supper and Aaron was trying very hard…and largely succeeding…in monopolizing the conversation.  I don’t remember Aaron’s question to Gary, but Gary decided to answer in a joking way.  Gary must have had a momentary loss of focus or memory.  Aaron rarely appreciates joking, at least not joking in the way that we…and all of you, no doubt…would understand.  Most joking does not compute in Aaron’s autistic brain.  Instead, he is most often angered by the give and take that the rest of our family enjoys.

So, when Gary offered a little joking response, Aaron’s response was not at all light and funny.

“Dad!!!” Aaron responded.  “I’m trying to talk a NORMAL thing!!!”

Oh, how I wanted to look at Aaron and ask, “Aaron, please define normal!”

Aaron’s definition of normal would most assuredly not be our definition of normal.  And that’s OK, really.  It’s just that sometimes we have a hard time not bending over in a belly laugh when Aaron responds to one of us as he did.  Instead, Gary and I share a fleeting look of understanding with each other…a slight and very quick smile so that Aaron won’t notice…and wait until later to laugh at the whole situation.  Or sigh, very deeply.

But we can’t sigh when Aaron is around.

“Mom!!” he said once after I sighed.  “Don’t breathe madly!”

You would think that if Aaron notices my sighing then he would also notice and then copy how to engage in conversation, joking, excitement, and all sorts of other regular communication.  Yet that element is often missing from Aaron’s abilities.  It’s one of the mysteries of the autistic brain, that lack of being able to connect the social dots like you and I do.

As I mentioned earlier, our joking often sets Aaron on edge.  But what Aaron thinks is funny is usually not at all funny.  Aaron thinks it’s funny to whack a person on their bottom, for instance.  I’ll never forget the day he hauled off and whacked a resident doctor in the hospital.  That was an interesting moment, and so embarrassing for me.

And Aaron’s response when corrected was, and always is, this:  “But I was just trying to be funny!”

We had this recurring scenario one day, with Aaron telling me he was just trying to be funny, when I repeated what I often say:  “Aaron, what’s funny to you usually isn’t funny…at all!”

He looked at me for a few seconds and then answered:  “Mom, I don’t know what I could use as funny.”

And THAT is a very true statement!  It’s also a very insightful look into what makes Aaron tick.

Yet Aaron truly is very funny sometimes, although he doesn’t know that he is.  He says things in such unusual and comical ways, but we often can’t laugh because we don’t want him to be self-conscious or to get angry.

A couple examples from this past week:

“Dogs are more trainful than cats.”

 

After dumping Parmesan cheese on his pizza:  “Mom, you’ll need to  buy some more of that spaghetti powder!”

 

And a favorite from the past, after I once again reminded him not to ever ask a girl how much she weighs:  “Mom, I didn’t ask Tiffany how much she weighs.  I asked her how much she eats!”

🙂  🙂  🙂

Aaron’s talking can also be very draining to Gary and me.  Sometimes we try to slip out of the house without Aaron hearing us.  We sneak out the garage door, closing the door to the house as softly as possible, and then we sit on our front porch for a few minutes to ourselves.  We feel like two teenagers who are trying to sneak out without permission, and it makes us laugh.

 

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But usually it isn’t long before we hear the unmistakable sound of Aaron in the house, clomping down the stairs and most certainly looking for us.  He has something he must say and so he searches until he finds us.

Here he was one evening, standing on the sidewalk talking to us as if he was on a stage and we were his audience.

 

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His subject was no doubt something like Star Wars and the Jedi Knights…or Transformers…or whatever else he was playing on his computer.  Talk of androids and Anakin and Padme’ and Darth Maul…of Sith Lords and Jedi knights and clones and Queen Amidala…of light sabers and droids and the force and motherships.

His excitement builds as Gary and I slip further into a stupor.

 

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Aaron doesn’t notice our glazed eyes or fixed looks.  He’s having his version of fun!  But then the dreaded happens!  He asks us a question.  And we just look at him blankly while he, at last, is quiet as he awaits our answer.

Our brains scramble to link up to the last thing or person or alien or whatever that he was talking about.  If it’s a person, my usual answer is actually a question:  “Ummmm…is he a good guy or a bad guy?”

Aaron happily answers me, and once again he is off and running – thankful for any engagement from me or from Gary.

Ah, yes, we’re having Aaron’s version of talking a normal thing.

But sometimes…sometimes…Aaron is quiet, like he was on the porch during this rainy moment.  It was such a sweet moment, too.

 

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And I am reminded that Aaron needs me and Gary to understand his normal and to, when possible, allow his normal to be our normal, as well.

WHACK!!

Except for that.

Sigh.