The Plan

Today is a super special day!  You see, it’s my anniversary…OUR anniversary!  The day that Gary and I said “I Do!!”  It was 39 years ago that I wore the beautiful dress that my mother had made, every stitch lovingly sewn by her hand.  39 years ago that I walked down that aisle of the brand new Johnston Chapel Baptist Church, the first bride to do so in our new sanctuary.  39 years ago that I joined my hand with Gary’s and we embarked on our new life together. 

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Doesn’t it sound perfectly romantic?  And it was!!  It was because we planned it that way.  Every bride plans her wedding day to be exactly as she wants it to be.  We’re watching our daughter, Andrea, plan her wedding to Kyle now.  It’s fun to see their special day taking shape. 

No bride and groom plans for things to go awry on their special day.  Sometimes things don’t go as planned on the big day, but the plan is for all to be as perfect as possible.  Perfect plans, planned with perfection…the dress, the tuxes, the flowers, the attendants, the food, the music…each checked off the list as the plans take shape. 

The PLAN!!

Fast forward 39 years, to this morning.

I had a plan for this morning.  I was going to sleep in on this Saturday morning.  My normal wake-up time is 5:30. That’s a.m.  So on a Saturday, I love having no alarm go off.  I love waking up when I wake up, which is never real late but any time past 5:30…A.M.!!…is late for me. 

Part of my careful plan is to even set the coffee-maker alarm for one hour later than normal.  Ahhhh…luxury!!

Therefore, you can understand my irritation when our old Great Dane stood up this morning in our bedroom where he sleeps, and halfway shook himself, and woke me up.  I knew…I just KNEW…what I was going to find.  Jackson doesn’t get up off his mattress on the floor very easily now because he is so old and stiff, but the one time that he will get off his bed is when he either has to go potty, or he already HAS gone potty.

This morning it was the latter.

And it wasn’t even 6:00 yet…which means it was five something…too close to my normal wake-up time for this Saturday morning when I had so carefully planned to sleep late!!

And yeah, there was poop involved, on the floor and on his bed.

I did finally go back to bed after the clean-up, but it just wasn’t the same.

Happy Anniversary day!

Dear Gary had given me flowers yesterday evening, and this morning they were joined by the sweetest card.  Then later, coffee cups in hand, we walked down to our little Mulberry tree with Jackson sniffing all around, and we picked mulberries.  It’s so us, this simple kind of thing.  It’s the simple life that we love in the place that we are.  I was planning breakfast on the patio with the birds and me and Gary, then making his favorite cheesecake, and on I went with my planning.

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Then the back door opened.  Gary and I saw Aaron coming across the yard.  He was early to get up, as well.  We both looked at each other, knowing what we each were thinking.  Aaron joining us wasn’t really in our plan for this morning quite yet.

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Aaron wondered what we were doing.  He was unimpressed with the fact that we were picking mulberries.  He wanted us to be back in the house, where we could see that he had his coffee and where we could listen to him talk.  But we continued picking our mulberries while Aaron walked back to the house, a little in a huff because his morning wasn’t beginning as planned, either.

Soon I did fix our breakfast, where Gary and I were once again joined by Aaron.  He was still a bit huffy and on edge, but bacon helped.  I thought it was quite ironic that he was wearing a shirt that said, “No Bad Days.”  HA!!

I wish it could be that simple, but with Aaron it’s just not.  A day not going as he so carefully plans can set him on the wrong path for sure, and Gary and I are dragged along as well.  But breakfast, and joining me as I watered the flowers, and going with Gary to the hardware store, did a world of good for Aaron…and for us…and so our day has been going along just fine.

Not perfect, though, as we would like to plan for our anniversary to be.  But it’s us, with Aaron, and it’s really what it’s supposed to be.

39 years ago, in that pretty church with all our plans coming together, I would never ever have dreamed of having our 33 year old special needs son still living with us.  It’s not that we don’t love Aaron.  It’s just that having ANY child with special needs, and all that this life entails, would never have been in our master plan. 

But our life, with Aaron, WAS in God’s master plan for us…because He is the Master of our lives.  We’re not.  It really is that simple.

Yet not that easy, on many days and in many ways.  We have questioned and struggled and been angered plenty of times over these years.  And still, God reminds us that our plans are not always His plans.  He tells us that He knows the path that we take, because it’s the path that He put us on.  It may be a path with suffering and pain, with questions and even anger, but it’s always with God beside us and under us and all around us. 

I’m thankful that God also forgives us, because we don’t do this very well on some days.

I looked at my cup of tea this morning as we ate breakfast on the patio, Aaron included.  My tea was in a wonderful mug that our friend, Terri, helped Aaron make for me while we were out of town last week.  He wasn’t sure that he would like painting, as he calls it…and he still isn’t sure that he liked painting.  But he is very proud of that mug.  He even opened the running dishwasher the other night when friends were over so that he could show them his mug that he made for Mom. 

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I will treasure that mug.  I will treasure our Aaron, even on the trying days, with God’s strength.

And I will treasure the careful plan that God has made for our life, including the trying days, with God’s strength. 

Our life began with a plan, and our life will end with a plan. 

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God’s plan!  The best plan!!

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Long Time and Long Day

My goodness!  It’s been such a long time since I’ve written anything new on here that I had to look back at my last blog to refresh my memory.  I haven’t been able to write about life because of life being hectic and so busy.  When I don’t write for awhile, I feel like I’m covered up with things that I want to talk about.  There are too many happenings to share coherently.  So I hope I will just pull back, focus, and be as brief as possible (since WHEN??!!).

Let me say here that I do write more snippets of life with Aaron on my HeSaidWhat Facebook page.  (https://www.facebook.com/hesaidwhat84/).  You might want to check that out, like it, and follow along.

Now, where was I?  LIFE!

Gary and I did make it to Houston after our crazy few days with Aaron’s seizure injuries, written about in my last blog.  Poor guy!  The morning we left, before Casady (awesome friend!) came over to stay with Aaron, Aaron got out of bed and had blood on his face and pillow.  It was more of a pink blood, but still I was worried about his tooth extraction site.  All was well, though, and he did fine while we were gone.  He only had one seizure during his sleep while Casady was here.

We enjoyed being with our kids in Houston, so much!!  Time with Andrea and her fiancé, Kyle…and our son, Andrew…was great!  It’s always too short, but we’re thankful for every minute.

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It was wonderful to spend time with Kyle before he had to go back out to sea.  Sweet to do a little more wedding planning with Andrea, and to hear about her genetics lab that she manages and of the exciting new project that will soon launch under her leadership.

And it was loud and fast and fun to be at Royal Purple Raceway for the NHRA race that weekend, where Andrew is working now for Leah Pritchett and Don Schumacher Racing.

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We got to take Kyle’s mother, Marie, with us on Sunday and introduce her to this sport that you have to see and HEAR and feel in order to fully appreciate.

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Side note:  Leah was the #1 qualifier that weekend and broke a track speed record!!  And this past weekend, in Atlanta, she and the team took home the Wally!  That means they won the race, for those of you who were like me a few years ago and have no earthly idea what a Wally is!

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Even Aaron, who used to be very jealous of Andrew and who bad-mouthed racing, has become a huge fan.  This past Friday, I picked Aaron up at the theater after his group had watched a movie.  It went like this:

 

Me: Did you like the movie?

Aaron: Not really.

Me: Why not?

Aaron: Well, it was about a volleyball game.

Me: Oh, I love sports movies! Why didn’t you like it?

Aaron: I don’t like volleyball. I only like drag car racing.

 

We never thought we’d see the day!

So Aaron has had a few more falling seizures since our return from Houston.  He scraped his neck on the edge of his desk.

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He fell the following morning as we headed out the door, but I was able to somewhat break his fall, thank the Lord!  Our unfinished floor would have been brutal for landing!  He did bend his glasses but that’s no big deal.  Then he had another seizure that night but was sitting, which was a blessing.

I think I’ve figured out a pattern for these seizures, somewhat.  I changed Aaron’s appointment to his Epileptologist in order for him to be seen sooner.  Gary and I have decided to try CBD oil, and our doctor agreed to that plan.  It arrived today and I’m anxious for Aaron to give it a go…and praying that it will help his seizures, and aid in other ways as well.  Aaron has lost lots of weight and has been over drugged, big time, so we really weren’t wanting to go back to adding more meds.  We have lowered his seizure drugs and are hoping we can stay there.  I was reminded this morning as we drove to his day group about how very tired these drugs make him.

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Scenes like that tug at my heart.  I so desire for Aaron to live as normal a life as possible…to feel alert and strong…to be happy.  Many things beyond his control so often prevent that from happening for him.  Seizures…autism…behaviors – all of it can make his life challenging.  One minute he has me laughing…then he has me crying…later I want to throttle him.  So it went on Tuesday.

Our van was in the shop for new tires and some other necessary work.  I couldn’t take Aaron to Paradigm, his day group.  He was quite happy about that, for no matter how much he loves Paradigm and his friends there, he thinks that staying at home is the absolute BEST!  Here is what I wrote on my Facebook page about one of our morning encounters that day.

 

Aaron is staying home today because our van is in the shop for new tires and a check-up. Therefore, I can’t drive Aaron to Paradigm.

Therefore, Aaron is following me around as he talks…and talks…and talks.

Therefore, I have already told Aaron several times that he needs to go find something to do.

It is only 8:37.

Aaron found something to do. He is watching Falling Skies, so he hurried downstairs to tell me that the Queen Skitter Alien is big. Why is she big? Why is she the Queen? Why is there not a King?

Therefore, we discussed Queen Ants and Queen Bees, including their size, which is large. Huge, even, according to Aaron.

There ARE times that Aaron does connect the dots. Usually in ways that are unwanted.

Therefore, Aaron just barged down the stairs with this tidbit:

“Mom!! You’re the Queen, because you’re HUGE!!”

Therefore, I gave Aaron my best stink-eye stare, which he finds quite funny.

Therefore, it’s gonna be a LOOOONG day!!!!!

 

I had no idea when I wrote that about WHAT a long day it was going to be.  Aaron was first funny…

And then Aaron pulled at my heart.  I was outside watering and weeding some, and Aaron decided to “play in the mulch,” as he calls it.  He has always, since he was a little boy, enjoyed breaking sticks and leaves and mulch into tiny pieces, and watching it fall into his trash can.  It’s a very autistic behavior which relaxes and calms and focuses him.  But there is something about it, especially now that he’s an adult, that just touches my heart for him.

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He also decided to lay back on the sidewalk for a minute, and I wondered what neighbors or passersby may have thought if they saw him.  I often wonder that when it comes to Aaron, actually.

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Later came the frustration.  GREAT frustration!

Aaron was not having as much fun staying at home as he thought he would.  He was at loose ends, seemingly bored though constantly denying it, and was continually following me around the house…talking and talking and talking.  I had lots to do and we had no way to go anywhere, except to take our Jackson for a lingering walk around the yard, so Aaron was trapped.

I was trapped!!  In desperation I threw out a life line.  I know better than to do what I did, but I did it anyway.  I told Aaron that when Dad got home from work, we would go to the shop and pick up the van.

What was I thinking??!!  I know not to tell Aaron that something is going to definitely occur…or sometimes to even tell him that it MIGHT occur…because if it doesn’t, then Katie bar the door!!  And I know not to tell him far ahead of time, because the event then becomes his major focus.  I think he had sucked all the oxygen out of the room and I was light-headed.  Not thinking clearly, you know.

Aaron wanted Dad to come home, way before it was time for Gary to be home.  He asked and asked and asked when we were leaving.  I watched the change coming over Aaron with each time he asked that same question, over and over and over.  His focus had narrowed to that one upcoming event, and he wanted it to happen NOW.

When Aaron is like this, his mood becomes angry and impatient.  He wants what he wants, immediately, not later.  It’s totally impossible to veer him from the one thing upon which he is, at this point, obsessing about.

The more I said, the angrier Aaron became.  He was rude and belligerent.  I was tired and frustrated.  I walked away from Aaron several times before saying something that I knew I would regret.  Funny Aaron was now fuming Aaron.

It truly is amazing to see how his mind works at times like this, though I would rather not.  We’ve often said that at these times, Aaron is like a train on a track and there is no derailing him.  A milkshake might have done the trick, but that wasn’t an option.  It was a long late afternoon.

Then Gary got home, unaware of the tension in the house.  His phone rang right away and I listened as he was being told that the van wouldn’t be ready until the next morning.  AAAAHHHHH!!!!

But Aaron was spent, I guess, and with a new person in the house to talk to, he cheered up dramatically.  Gary is amazing, coming home from a demanding job and then dealing with the demands of Aaron.  Aaron was content to later watch some television with me, and then play a game of Skip-Bo…which he won, happily!

Recently, a friend sent Aaron some money for him to use in whatever way he wanted.  As we strolled through Wal-Mart, Aaron found this:

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Aaron flashes the peace sign all the time, so this figurine was perfect for him.  He wanted it right away, so some of Bill’s gift was used for this gift for Aaron.  It’s a perfect fit!

And it’s a perfect reminder to me that peace always returns after the rough spells – both peace in our home and peace in my heart.  That’s because I know the God Who made Aaron.  I know Him personally and He guides my every step, orchestrating each day.

God’s peace is only one of His many gifts to me.

Aaron is another one…another of God’s gifts.  I need to remind myself of that fact at times.

Actually, God has many ways of doing just that in my life…of reminding and refreshing me.

And for that…and for Aaron…I am grateful.

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All Aaron!

I heard Aaron through the baby monitor early this morning.  He wasn’t having a seizure but instead was making the unmistakable sounds of getting out of bed for more than just a trip to the bathroom.  When he turns his lamp on and moves his stuff out of his desk chair…his two back scratchers and his hand towel – always, always in his desk chair…then I know that he is getting up for the day. 

UGH!!!  I knew it was way, way too early for him to be awake for the day because I had just rolled over, unable to sleep myself, and saw that it was 4:00 a.m.  I turned the monitor off, tried to sleep but couldn’t, and later just got up and began my day. 

I was sitting at my quiet time desk, Bible and study book open, when in walked Aaron.  Another UGH!  And I don’t mean to sound mean.  It’s just that Aaron will not leave me alone if he is up and about in the early morning.  Without even looking at him, I said, “Aaron, do NOT come in here right now.  It’s too early.”

Total quietness.

So I turned my chair around and there stood Aaron, some videos in hand, slightly smiling.  He looked very chipper and very fully awake, and very happy.  Much happier than Mom.  But I had to smile, too, at the cute look on his face.

“Mom, I got out of bed…” he began.

“Don’t even go there,” I said.  “I know you were up at 4:00.”

“4:11,” he flatly replied.

I had to belly laugh at that.  His precision is always so funny, even before 6:00 in the morning!

We talked and compromised, Aaron saying that he would go back to bed if I would make sure he was awake at 7:30 so that he could say goodbye to Dad before Gary left for work.  Agreed.

I thought about yesterday when Aaron and I ran into Dillon’s before I took him to his day group.  If possible, whenever we are in Dillon’s, Aaron always loves walking up to the fresh seafood and fish display.  He loudly points out the shrimp, lobster, crab legs, and anything else he finds unusual and therefore very interesting.

But yesterday there was a surprise!  Aaron was beyond excited to see two whole fish, Tilapia, laying there on ice. 

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“MOM!!!  LOOK!!” he exclaimed as he pushed his way in front of a little family also standing there.  “He’s ALL fish!!!” 

How I love the way that Aaron expresses himself…well, most of the time!

Gary and I can truly say…He’s ALL Aaron!

Like taking him to Subway over the weekend for a sub.  Subway and Great Clips are two places where, for some reason, his autism just shines.  There in Subway he told the young girl waiting on us all about Dracula since he’s getting ready to watch the old, old Dracula movie.  He asked her if she had seen the movie, did she know where Dracula lived, and how his voice “sounds like England.” 

I kept re-directing him to think of his sub and not Dracula, so he told the girl that he wanted the bread with the black dots on it.  I had told him the correct name since this bread is new to him, but he couldn’t remember that.  She looked confused, I tried to interpret, but Aaron by then was already asking her if she could show him a picture.  And on we went from there until finally we had the sub with black dots in hand and safely exited. 

Later, as he ate his black dotted sub, I asked him if he liked that new bread.

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“I like it!” he answered.  “It tastes weird.”

That’s Aaron…ALL Aaron!

His take on food is so interesting and funny.  Last night he was eating peanuts.  He is often fascinated, over and over, by the outer skin he sometimes finds. 

“I’m afraid to eat those outering parts of the peanuts,” he told me. 

And orange juice pulp – “This orange juice looks like it has worms in it!”

There he goes…ALL Aaron!

Today describing his observation at Great Clips – “You know what I noticed they do to those women?  They take them to that water place and put their HEAD in it!!” 

YIKES!!

All Aaron again!

I could go on and on sharing many insightful, funny, amazing, and embarrassing comments from Aaron.  I have tons, trust me!  So why do I share?  To make you laugh?  Cry?  Scratch your head…like we often do? 

It’s like this not-too-great picture I took of Aaron awhile back.  We had just gotten home after I picked him up from his day group.  Aaron LOVES to share with his friends, so on our drive home he was already asking about what goodies he could take the next day to share with Natalie, or Simone, or Heather, or….

He didn’t even take his coat off, but just sat down on the floor in front of the cabinet, pulled out the snack drawer, and went to work searching for his next treat to share.

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In much the same way, I want to share with all of you what a unique young man our special Aaron is.  There are so many varied parts to Aaron.  Some parts I love to share, and others I may want to hide, but they all make up who our son is. 

Autism is not the end of the world, honestly. 

Instead, it can be the beginning of another world…a quite amazing journey.

And so I want to say to each of you –

“LOOK!!  He’s ALL Aaron!”

 

To Notice or To Ignore

The other night, Aaron and I were watching a DVD as he munched happily on his jar of peanuts.

“Mom!!” he suddenly exclaimed.  “What’s this on my dry roasted and salted peanuts?”

That by itself was funny, the way he says the complete name of the peanuts printed on the jar. Of course, Aaron sees nothing unusual about that at all.

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What WAS unusual, to him, was the little thing that he held up for my viewing.

“What’s what?” I asked as he held something miniscule up for me to see.

So Aaron quickly pushed back his blanket, crawled out of his chair, and stood beside me with his open palm carrying the mystery object.

Before I could tell him what “it” was, Aaron decided to first inform me of what he thought “it” was.

“It’s the cover that’s on some of the peanuts,” he told me.

This isn’t the first time that Aaron has called the thin skin on peanuts a “cover.”  It had been awhile since we had carried on this conversation.  I therefore told him once again that the “cover” was actually a thin skin that remained on some of the peanuts after they were processed.

“A skin?” he asked.  “Can I eat it?”

I assured him that he could eat it.  Later, after he had gone to bed, I found several peanut coverings on the table…ones that he had set aside, not to be eaten along with his dry roasted and salted peanuts.

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Yesterday, Aaron and I ran down to Dillon’s to buy him some lunch.  There in the entry were some little Girl Scouts selling their Girl Scout cookies.  Aaron had walked ahead of me, so as I grabbed a cart one of the girls focused on Aaron.

“Would you like to buy some cookies?” she asked him.

But Aaron had spied the salad bar.  At that moment his entire focus was on lettuce and cheese and boiled eggs and lots of ranch dressing…not on little girls with yummy cookies for sale.

Aaron completely ignored the girl’s question as he barreled in the open door and headed for the salad bar.  I was hurrying after him, because Aaron is sometimes a disaster at salad bars.  My job is to keep his fingers out of the tempting toppings, his head out from under the plastic shield, and to minimize spillage as he insists on “doing it myself!!”

But as I rushed by the sweet little scout, I definitely saw the look on her face.  She was confused by Aaron; for many reasons, I’m sure.  One of the big reasons, though, had to have been the way he completely dissed her and her question.  She was totally ignored.

I smiled at her as I scurried by, thanking her and saying no thanks, and wondering what she must have thought.

I survived the salad bar with Aaron, even as he told me I was rude for taking the tongs away from him as he spilled first some lettuce and then some cheese, and as I yanked the ranch dressing bottle from his hand before he squirted half of it on his salad.  A man was awaiting his turn, and as I turned to walk away he just smiled at me.  Aaron does have a way of becoming the center of attention no matter where we are.

I grabbed a few more items and then we went through the self check-out, me reminding Aaron over and over to stand beside me.  No wandering off to inspect other’s purchases, engage a random stranger in conversation, or sit down at a Starbuck’s table up the aisle while he ignored the worker who asked him if he wanted something.  All of the above…and more…he has done, trust me.

It was easier this time, though, because Aaron was keeping his eyes on his salad.  After I had paid for everything, he took his salad and held it in his two hands.  He walked this way out of the store, holding that salad ever so carefully, as if he was carrying a delicate Ming vase that he dared not jostle at all.

Aaron was once again so focused on his salad that when the young man who was overseeing the self check-out spoke to Aaron, Aaron once again totally ignored him.  And once again I saw that look on the employee’s face, the look that mirrored the one on the little Girl Scout.  A moment of confusion at being dismissed in such fashion.

But I also saw the young man’s face relax with understanding as I was sure he was quickly processing the reality that is Aaron.  And as I walked by, I spoke to him as I chuckled, and he broke out into a huge grin.  He got it!

How is it that Aaron can pay attention to a tiny little peanut “cover” while totally ignoring human beings who are speaking to him?

Elementary, my dear…elementary.

Autism.  Pure and not so simple.

Aaron often notices what we don’t notice, and ignores what we do notice.

When it comes to ignoring people, we can be downright embarrassed at times.  And then there are those times that it’s probably better for him to not notice certain people.

Anyway, the complexities of autism take many years and many experiences to understand.  Plus each individual is just that…an individual who is unique in how autism presents itself in their life.

That’s why it’s called a spectrum.  A “broad range of varied but related ideas or objects.”

Except Aaron is not an idea or an object.  He is a unique and varied human being, one who delights and engages and ignores and yells and frustrates and…

Well, you get the picture.  At least I hope you do!  Because then you can smile more as you enjoy the broad and varied view.