Feeling The Lines

Aaron walked into the kitchen the other night and my eyes were drawn to his feet.  Why?  Because this is what I saw.

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I poked Gary with my hand and motioned for him to look, and then we both stifled our laughter.

“Aaron?” I asked.  “Why are you wearing your slipper socks that way?”

“Because I get tired of feeling the lines,” he answered, matter-of-factly.

Who cares about the safety factor of non-skid lines NOT being on the bottom of your feet where they belong, right?  Comfort was most important to Aaron, as it always is…not safety, and certainly not style.

Comfort in areas other than clothing is also very necessary to Aaron.  However, these “other” areas are sometimes a mystery to us.  Or they are areas in which we know Aaron struggles because of his autism but are also situations over which we have no control.  And, I might add, over which Aaron has no control.  No matter how much we wish he did, or think he certainly could or should, he just doesn’t have the ability to corral his emotions and frustrations like a typical person does.

Here’s an example:  Aaron and I were recently in Longhorn Steakhouse for lunch before one of his doctor appointments.  There was a table near us where several businessmen sat.  They were having a normal conversation, but one of the men in particular was rather loud.  When his animated voice was combined with the normal give and take of the other men, their voices at times overtook our area.

I saw Aaron’s eyes dart over to their table several times.  Soon I knew that Aaron was bothered by the sound of their talking, especially the louder man.  They would talk, and laugh, and talk and laugh some more.  Finally, Aaron was downright staring at them, so I told him to stop doing that.

“Why do I need to stop?” he asked.

“Because you need to mind your own business,” I told him.

“How can I mind my own business?!” he impatiently answered.  “They’re talking and laughing!  I can’t stand it!!”

I was proud of Aaron for verbalizing his feelings to me.  I was also nervous that he would tell those men to be quiet, as he has done in other situations.  But he didn’t do that, thankfully, and I was able to keep him engaged in our own conversation about movies and aliens and other subjects that were far more valuable to him than all that silly, loud business talk!

Sometimes the slightest nuances can trigger Aaron.  Sometimes what triggered him yesterday might not trigger him today.  Or what upset him today is something that he laughed at yesterday.  We just never totally know or can predict with accuracy when his anger will erupt…or simmer.

This is one of the very most difficult parental aspects of raising a child…or having an adult…with the behavior issues associated with autism.  And even when you have had smooth sailing for a while, a storm can always be on the near horizon.

Another example:  Last week Aaron got out of bed and came into the kitchen.  I don’t remember what I said or did, but I think I told him good morning and I said it with a face that was a little more alert and happy than Aaron wanted at that moment.

He looked at me with bleary eyes, no expression at all, and then flatly said, “I wanted a normal face.”

And I knew, as well as I knew that the sun was shining outside, that Aaron was very irritated.  I mean, it was really pretty funny that he wanted a “normal face.”  But I know him well and I knew that if I laughed then I would be in for a very rough morning.

So I just turned away…and therefore he couldn’t see my rolling eyes and my smile…and I made no comment.  Sometimes silence…my silence…is definitely golden.

But my silence was also to him, at that moment, a cause for further frustration.

“How about if I tell Sarah about your face?!” he said with challenge in his voice.

Sarah is one of the staff at his day group.  Aaron thought that I would not like him to tell Sarah about my abnormal morning face.

Oh, Aaron!  Here we go, I thought.  So I poured his coffee and escaped to my shower, door closed on both Aaron and his unpredictable anger.  Thankfully, by the time I was ready to go a while later, he was over his mad spell and all was well.  Plus, I don’t think Sarah ever knew about my weird face…but if she did, I’m sure she smiled behind Aaron’s back as well.

My friend, Wendy, texted me yesterday about her particularly rough time with their Elijah the night before.  She went to see a play that her other children were in.

“I thought I had my props ready, the stage set, E primed and ready for our outing…but oh, no.  It couldn’t be that easy.”

She went on to tell me that he wanted to take his hot chips and his balls into the theater, how he ran in front of a car, how he sat and very loudly crunched his chips, and how humiliated she was.

How I wanted to hug my friend!!  How well I understand how she felt!!

We have had those terribly embarrassing and difficult moments with Aaron over the years.  In fact, when Aaron attended the day school here for special needs students, we got a phone call one night from his amazing teacher.  Mr. Z told us that Aaron had won the Student of the Week award for best exemplifying the classes’ word of the week, which I believe was “patience.”  He told us that Aaron would receive the award the next day, and that he just wanted us to know about it before it happened.

Gary and I were amazed and thrilled!!!  I felt like Aaron had won a Nobel prize!!  I hurried down to the family room to tell Andrea and Andrew.

“Guys!!!” I excitedly started.  “Aaron is winning the Student of the Week award tomorrow!!!  Guess what the word of the week is?!!”

And without skipping even a beat, Andrea answered, “Hateful?”

We laughed and laughed and laughed.  Of course, Aaron wasn’t there to hear any of this.  But really, that was a true question.  Andrea and Andrew had endured many experiences like Wendy described with Elijah.

At times, Aaron and Elijah just cannot stand to “feel the lines.”  None of the rest of us mind the lines at all.  In fact, we don’t even see the lines.  But our boys do…and so do many, many others who struggle with the issues of autism, be it noises or lights or people or social situations or food or any one of dozens of other frustrating cues that only they see and feel.

So, if you’re out somewhere and you see a meltdown happening, and you see a desperate and exhausted parent, and very humiliated siblings – please don’t assume that this eruption is a result of bad parenting.  Don’t assume anything.  Just give a smile, lend a hand if needed or possible, show some understanding instead of judgment, and pray for that family as you walk away.

And know that in that paralyzing moment of public shame, every parent would look at you and say with Aaron:

“I just wanted a normal face.”

 

 

 

 

Happy, Helpful, and Forgiving

It’s beyond time for an Aaron update.  I do believe I could write every day about life with that young man of ours.  I wish I had that kind of time, so since I don’t, I’m sitting here wondering how on earth to corral my rambling thoughts on recent…or not so recent…Aaron antics.  And not only his antics, but what those actions show about the real Aaron, deep in that brain of his.

Aaron has been mostly happy lately.  He is showing that happiness in various ways.  One way is by being extra helpful, so he’s been taking out the trash and the recycling; setting the supper table; carrying in groceries; and even helping others in ways that are…well…a little intimidating.

I saw that for the second time yesterday as we left Sam’s.  We were walking to our van when Aaron spied a lady near where we parked, putting her items in her car trunk.  She had a couple heavy packs of drinks.  Before I knew it, Aaron was running toward her.  I knew what he was going to do because he had done this same thing last week at Wal-Mart.

“Aaron!” I said.  “Come back here!”

But he was determined to help this random lady.  She looked up, a tad startled at first, but then she quickly relaxed when she saw Aaron.

“Hey!” Aaron blustered.  “I’ll help!!”

She smiled and actually let him!  Then she looked at me with a big smile, which made me very happy, as Aaron proceeded to put her two heavy drink packages in her car.  She thanked him as he stood there with a huge smile, rubbing his hands together in his Aaron way, and then came back to the van.  And I don’t know who was happiest at that point…Aaron, or me!

The lady last week at Wal-Mart was kind but said no to Aaron.  So as I did then, I once again explained to Aaron that his offer was very nice but that he had to understand that running up to various women at their cars might be scary to them.  Aaron thought this to be strange, even after I explained it to him.  It’s so amazing that he doesn’t get it, that social norms elude him. 

I had just seen this demonstrated a few minutes prior to the parking lot incident, while we were in the self-checkout lane inside Sam’s.  A man in the other lane beside us was trying to get the attendant’s attention.  She was talking to someone else and was unaware that this man needed her help.  He continued to try to get her to notice him.  What I was noticing was that this exchange was bothering Aaron.  He was bothered by the fact that the man’s voice was rising, and he was bothered by the fact that the attendant didn’t hear him.  Therefore, Aaron decided to be helpful once again.

“HEY!!!” he yelled out. 

Well, well, well.  This did get the attendant’s attention.  And Aaron got a very annoyed look from her, with a raised eyebrow to boot.  I apologized to her while correcting Aaron, and then she realized about Aaron, and she was kind and understanding, and Aaron’s face turned very red, and I have no idea what the irate man was doing. 

WHEW!!!!

It was another teaching moment for Aaron, with me doing the teaching and Aaron looking around for someone else to help. 

OK, where was I?

Oh yes, I was talking about how happy Aaron has been and how he shows it.  He was so happy to see my good friend, Jennifer, in Sam’s that he gave her a big hug.  Yeah.  SO big and strong that I texted her last night to see if she was hurt.  She said she’s not.  Oh, Aaron!  Just another social norm and boundary that Aaron doesn’t get. 

Sam’s was pretty exhausting yesterday, can you tell?

In fact, by the end of the day, Gary and I were at the end…of our patience and our wits and our nerves.  I don’t know, it was just such a tiring evening with Aaron.  He wasn’t bad at all.  But goodness, he LOVES to talk!!!!

That’s another way that he shows his happiness.  Talking!  Almost incessant talking!!  He’ll be in his room for a few minutes and then we hear him barreling down the stairs.  He finds us no matter where we are…outside, downstairs, in the garage, on the porch or patio, or in the bathroom.  It matters not!  Aaron has something to say and he WILL say it, even if he’s said it a million times before.  You think I’m exaggerating?  It certainly doesn’t feel like it to me and Gary.

We often tell Aaron that we just talked about this…that he needs to look that up on his computer…that we don’t have a clue about it…and we even throw up our hands as we say, “I DON’T KNOW!!!!”  But Aaron is not easily deterred as he pushes on with his comments and his questions and his observations…over and over and over. 

I wish I could say that I’m ever the wise and patient mom.  I wish I could give examples of how to always be on top of these issues.  But in all honesty…and I do try to write this blog with all honesty…I’m just not.  Not always patient and calm and understanding, much as I want to be. 

At the end of last night, when I was at the end physically, Aaron and I were in the kitchen.  He was talking again and I was just so done.  He, I thought, spilled a little water on the kitchen floor and that was it.  I didn’t yell, but I talked through…I’m ashamed to say it…gritted teeth. 

“Just clean up the water,” I said, in my “gritted teeth” voice.

I hurt Aaron’s feelings. 

“Shut up!” he responded.  More than once.

This prompted a stern rebuke from Gary.

Well, the rest of the evening went fine as Aaron and I went through his bedtime routine.  But when it came time to give him his hug and a kiss on his cheek, he put his arms under his covers and said no.  No goodnight.  No hug.  No kiss. 

“Because you were mean to me,” he said.

So I left his room.  But before long he was at my bathroom door.

“OK, Mom,” he said.  “I’ll say goodnight.”

He walked into his room with me following.  He got under the covers, held out his arms for my hug and accepted my kiss on his cheek.  Bless his heart.  He so wants our love.

Forgiveness is a big part of our life.  We have to forgive each other a lot. 

God forgives, too, and I’m surely thankful for that.

And God understands, as my dear friend Linda reminded me this morning.  She understands this kind of weariness as she reminded me that Jesus often tried to get away to be alone…but the crowds still followed Him.  I’m so thankful that God understands, and ever thankful for the forgiveness and peace He gives.

I’ll end on a funny note.  I am sometimes amazed at how quickly Aaron can be irritated by me.  I mean, really – ME?!  Be irritating?

It is very puzzling, though, at what can set him off.  Like the other morning, when feeding our Great Dane and fixing his pills in some peanut butter, I dipped into some peanut butter for myself.  This really bugged Aaron. 

“MOM!!  You act strange!” he said angrily.

“How do I act strange, Aaron?” I asked.

He stared at me a minute.

“In lots of DIFFERENT ways!” he replied as he turned and walked away.

Now if that’s not the pot calling the kettle black!  HaHa!!

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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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What Went Wrong?

Today is National Purple Day for Epilepsy awareness.  We are well aware of Epilepsy in our home because of our son, Aaron.  Aaron is 33 years old and has had uncontrolled seizures since he was in the first grade.  We were a military family living in Germany when Aaron unexpectedly had his first Generalized Grand Mal seizure.

It was a Sunday afternoon when Aaron fell back into my arms, thankfully, and began seizing on our kitchen floor.  I had no idea what was happening.  I remember seeing blood coming from his mouth…later learning that it was because he had bitten his tongue…and I remember yelling for Gary, who rushed into the kitchen and began trying to help Aaron while I called an ambulance.

The ambulance ride to the nearby military clinic…then another ambulance ride to the German Kinder Clinic, which is what we called the children’s hospital…was all a blur.  Aaron spent several days in the hospital, where the German care was good but the language barrier and the differing medical methods and practices were very difficult.  But the thing we did understand was the diagnosis of Epilepsy.

Over the years we’ve tried lots of drugs and other treatments, including hospital stays for video EEGs and surgery to have a VNS implanted, but the diagnosis is the same…Intractable Generalized Seizures.

Intractable – meaning not easily controlled or managed.

Generalized – meaning that the seizures quickly involve the entire brain instead of one small part of the brain.

OK, lesson over.

Because what I really want to do is to share with you the incredible strength and resilience of our Aaron…and of many others I know who struggle with seizures due to Epilepsy or other causes.  And to also share the incredible strength of God that He gives when needed the most.

This past Thursday night, Aaron had a seizure shortly before midnight.  I heard it on the baby monitor that sits on our nightstand beside our bed.  He had another just after 2:20 a.m.  And yet another seizure at 6:45 Friday morning.

He got out of bed not too long after that, heading to the bathroom and turning on the shower right away.  He cleaned up while I stripped his bedding and started the laundry process.  Soon Aaron was in the kitchen, telling me of his bad headache and asking if he could have his coffee.

He spent most of the morning here, as is so usual after these clusters of seizures.

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When he was more awake and feeling better, and after eating a little, he wanted to go with me to pick up a few groceries.  He was happy to come home with ice cream and cashews and sparkling water, and happy to have supervised Mom in buying what she needed to make for his supper request…Lasagna!!

Aaron went right back to bed when we got home, in his for-real bed now since part of his bedding was back on.  And at 3:33 – since Aaron appreciates such precision…he had the hardest of his four seizures.  Yet amazingly enough, within 15 minutes, he was out of bed…though slowly…and was happy for me to finish putting on all of his sheets and blankets.

Aaron always helps me change his sheets, but I certainly didn’t expect him to do that this time.  I told him to sit in his chair, but he didn’t acknowledge me at all as he stood by his bed, ready to help.

This is what I find so amazing about Aaron.  If I had been the one just finished with my fourth seizure, I imagine that the last thing I would want to do would be to help put sheets on my bed.  It was so heartbreaking for me to watch him stand there, part of the time with one hand on his wall and the other on the headboard of his bed, completely out of it.  Then he turned and bent over, just staring at nothing.  He couldn’t talk well at all, but when he saw a wrinkle in his cover, he reached out to correct it as quickly as he could.  I smiled as I saw his autism come out even through his very fuzzy brain.

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He stood there by his bed during the whole bed making process.  He tried so hard to function…to think…to speak…to move.  All of it was such a demonstration of how impacting seizures are on the brain.

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And it was also a commanding demonstration of how tough and brave Aaron is.  How he fights to keep going!  How much he wants his world to be his version of normal, even though it is anything but that.

He only had one piece of lasagna for supper.  That’s because he couldn’t taste food…another sad side effect of seizures.  His hand and mouth tremored, too…yet another side effect.   Then there’s the drooling.  And on the next day, extreme dizziness and needing help to walk because his legs didn’t work right for a while.  Even on Sunday, his sense of taste hadn’t fully returned.

Medicines that help seizures have side effects.  What is what, we don’t always know.  But decrease or stop the meds, and the seizures increase.  It’s a complicated situation.

It’s a reality for far too many people…far too many families.

But I want to answer the question that Aaron asked me on Saturday as he talked about his seizures.  He sometimes verbalizes his thoughts in profound ways, especially when he is thinking about being born to live a life with seizures.

“Mom?” he asked.  “What went wrong with me?”

A heart-piercing question from my son.

So to Aaron I said simply, and say here as best I can:

            Dear Aaron, nothing went wrong with you at all.  God made you wonderfully, as He tells us in Psalm 139.  You are fearfully and wonderfully made.  You were crafted by God.  I don’t know why you have Epilepsy, but I do know that God loves you and He has allowed this for a reason…one that we don’t understand right now.  But God loves you, and so does Dad and so do I.  We think you’re strong and amazing.  Even on our most frustrating days, and yours, we know that we can trust God because we know Who He is.  He is Sovereign, which means He is in charge and He knows best.  We’re glad you’re our son, and we will always be thankful for our Aaron.

“And we know that ALL things work together for good to them who love God, who are called according to His purpose.”  (Romans 8:28)

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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!”

 

What Time Is It??!!

So today I have another Chicago song rumbling around in my brain.  A couple weeks ago it was the song “Color My World” that I wrote about.

But today…today it’s the song, “Does Anybody Really Know What Time It Is?”

The chorus begins:

Does anybody really know what time it is?

            Does anybody really care?

Stop right there!!

Yes, somebody cares!!!

AARON CARES!!!

For anybody new to my blog, Aaron is our amazing adult son with autism.  And keeping the correct time is of paramount importance to him.  I mean, look at his log book that he keeps with his time to go to bed at night and the time he gets out of bed in the morning.

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And many of you still chuckle with me when I share conversations similar to this:

Aaron:  “Mom!  I woke up early this morning!  Guess what time I got up?”

Me:  “You got up at 7:00.”

Aaron:  “No!!  I got up at 6:58!!”

Aaron loves keeping his eye on the time, the PRECISE time!  Therefore, this change yesterday to Daylight Savings Time caused a huge bump in his road of exact time keeping.

And that’s why I waited until he and I were driving to Sam’s Club in the early afternoon to even casually broach the subject of another time change.  He listened and then didn’t have much response, but I’ve learned not to be fooled by his silence.  He was pondering this unwelcome news with each ticking second of his wristwatch…his wristwatch pushed way up his arm, always, for those of you who may not know that little fact.

His Sam’s food treasures kept him from dwelling too much on the time issue.  Pineapple slices…cheese cubes…dry roasted peanuts with sea salt (Aaron likes using their full description!) (and talking about what dry roasted means until Gary and I are sick of the topic of dry roasted peanuts with sea salt!)…strawberries…orange juice…and dog jerky for our big Great Dane, Jackson.

Once home and all unloaded, Aaron went out with me to the front yard.  He kindly picked up branches that had fallen in our last wind storm.  We praised him for his helpfulness, and how he was allowing Dad more time to work on our bathroom remodel.  Or as Aaron puts it – “tearing the bathroom.”  He was very proud of his job well done.

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And then it hit him.  The afternoon was moving right along.  We were going to watch our West Virginia team play Kansas at 5:00.  Aaron asked about what time the game started, which reminded him of that time issue discussed earlier, and the countdown began.

“Mom?  When do we change the time?”

“We’ll just change the clocks when we go to bed, like we always do,” I told him.

This question was asked in one form or another several times during the evening.  Then it got complicated.

It was 8:30ish when we finished watching a program.  “Maybe I should go on to bed,” Aaron said.  I suggested that we watch one more thing, and then he could call it a night.

“But when does the time change?” he asked again.

“Well, technically it changes during the night when we’re asleep, but we’ll set the clocks ahead when we go to bed,” I replied.

He was satisfied with that.  We watched one more NCIS and then it was definitely time to hit the sack.  Aaron ran down the stairs to say goodnight to Gary, remembering to have Dad change the time on his wristwatch.  We got all the bedtime routine taken care of, with Aaron pushing up his sleeve every minute or two to check the ever important time on his watch.  His eyes were darting, though, to the time on his satellite weather station.  We had told him that the time there would change automatically during the night.

Finally, he pushed up his pajama shirt sleeve, stuck his arm out for me to see, and said, “Mom, look.  It’s this time on me.”

He was struggling with having one time on his watch and another time on his weather station.  Nothing I said was helping much.

Then…THEN…the inevitable happened.  It was time for Aaron to write down his time to bed in his log book…and the time on his weather station did NOT jive with the time on his watch.

What to do??!!!

He wrote down the time displayed on the weather station.  I said goodnight.  I should have known it was not over.

Nine minutes after he went to bed, I heard his heavy footsteps coming up the hallway.  Soon there was a knock on the bathroom door.

“Mom?” he asked.  “Is it really 9:47?”

“Yes, Aaron, but during the night it will change while you’re sleeping.  Now go on to bed and don’t worry about it.”

Off he went.  I think it was 9:48.

I was starting to breathe easy, but I shouldn’t have.

More footsteps.  Another knock.

“Mom?  Is it really 10:03?”

Bless his heart.  These things are so, so urgent and of such great importance to him.  I dare not dismiss them or shrug them off or make him feel like he’s ridiculous to be so tied up in the stress of what time it really is.  Gary and I know to explain over and over, if needed…and it almost always is.  Small price to pay, really, for Aaron’s peace of mind and for ours.

All was well today.  Aaron was super excited to eat lunch at Carlos O’Kelly’s, so it appeared that all the time issues had been laid to rest last night, at the same time that Aaron finally decided to rest.

I think it was 4:43 when we were all walking in from the garage…and Aaron spied the time on the garage door opener.

“Dad!  It says 3:43!!”

And in no more than a couple seconds, maybe three, Gary had gotten that garage door opener in sync with Aaron’s watch, Aaron’s weather station, the microwave that Aaron had just watched me change, the oven, the radio…

So…

Does anybody really know what time it is?

            Does anybody really care?

Silly song!!

 

 

 

 

 

 

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.