Category: Autism

You Never Do That To Me!

One of Aaron’s biggest struggles is with jealousy.  And sadly, he is often the most jealous of the attention that we pay to our grandchildren.

Being Uncie Aaron is not always the joy to him that we hoped it would be.

On Saturday, Gary took Ryker for a ride around our yard on his riding lawn mower.   (No worries – the blades were up).  Sure enough, Aaron took note and soon said the all too familiar, “You never do that to me!”

So, Gary looked at Aaron and said, “Hop on!”

It was hilarious to look at Aaron sitting on Gary’s lap.  Aaron was really too big to fit and it was very awkward.  But good for Gary to give it a go!  And he could only go in reverse, which made it even funnier.  

How many times we have talked to Aaron about his place in our family as we assure him of our love!  

I was thinking about this as I continued my study in Nehemiah today.  Those that worked to restore the walls of Jerusalem, the temple, and the worship shared many various duties and positions.

Some were in high positions of leadership while others carried wood or cleaned up the many messes that were made.  Yet each person was appointed by God to the job he had for them.

Do you ever wonder about your place in life?  

Maybe you once held a position that is now gone.  

Or you never had a chance to prove that you could do what that other person is doing.  

Perhaps life has radically changed for you because of your health issues or age or finances or…you fill in the blank.

It’s so tempting to look at God and say, like Aaron, “God, you never do that for me!”

Comparison to others is the robber of joy.

Social media can be a real problem in this area.  I can be just fine and out of the blue see a post that makes me wish for something I don’t have.  

It can be any number of things, but the result is the same.

Ugly jealousy.

Discontent.

And if I don’t nip it in the bud, I might begin questioning God.

When we started our married life, Gary and I never dreamed that we would have a child with special needs.

Caregiving is not a life of leisure and does not allow for spontaneity in our lives.  Caring for Aaron is our life.  

We must consider him first in everything we do.

Your struggles are probably different from mine, but each of us do have those areas of raw questions that we may not share with anyone else but God.

Oh, but God!

He has given me that visual of Aaron riding on Gary’s lap to remind me that what I may desire is not His place for me.

I wouldn’t fit there.

God has put me here, where I am.  

If I don’t believe that then I am not living in obedience and trust to the God Who really does love me.

The God Who has put me in this place in His family for a specific reason.

So Lord, help me to get off that tractor where I sometimes want to be. 

Change my “You never do that to me!” to “Thank you for what you do FOR me in this place where you have put me!”

Another Lunch With Aaron

“Where are you eating lunch today?” asked the ladies at the front desk as Aaron and I left his Epilepsy doctor visit.  

“Chili’s!!” Aaron answered excitedly.

“Oh, I love Chili’s,” one said.

“I want to go to Chili’s!” added the other.

Aaron chuckled loudly as we left the waiting room, me warm with their always welcoming chatter with Aaron…and Aaron walking with purpose now because finally we were going to lunch!  After all, eating out is the real objective of every doctor appointment, at least for Aaron.

Soon we were pulling under a shade tree in the Chili’s parking lot, where Aaron was quickly opening his door while I quickly told him to wait on me.  He did, thankfully, and together we walked in the door.  

Curious stares greeted us as Aaron barreled in and had eyes for only one thing…the toothpick dispenser.  You see, Aaron “collects” toothpicks, so he makes a beeline in every restaurant to the sharp little prizes he knows are on the front counter.  He proceeded to increase his collection while I trailed slightly behind him, trying to greet the host while simultaneously attempting to discreetly tug Aaron away from the toothpicks.  Aaron was unaware of the host saying hello or of the all-too familiar looks he was receiving from the puzzled host.  He was too busy stuffing toothpicks in his pocket, but he did have presence of mind enough to tell the host we wanted a booth while I reminded him that any seat was fine.  

I was just happy to finally be seated.  Our server appeared quickly.  I could tell right away that he was comfortable with Aaron, and I hoped that attitude would last.  We were still early into his Aaron experience and one just never knows.

“Hello,” he happily said.  “My name is Luke and I’ll be taking care of you today.”

“Can I have a salad with NO croutons and TWO ranches??!!” Aaron bellowed.  

And for at least the millionth time I reminded Aaron that our server was taking our drink orders now.  Food orders would come later.

“Oh OK,” Aaron replied as if this was new news.  

Our waters came and the instant Luke asked if we were ready to order…

“Can I have a salad with NO croutons and TWO ranches??!!”

I guess I don’t need to tell you whose order that was.

Luke was smiling broadly as Aaron continued his order.  Aaron always asks IF he can have the menu items he wants, as if he needs permission from the server.  I don’t even try to correct him anymore.  I figure it’s part of Aaron’s charm.

We munched on chips and salsa while waiting for our meals, Aaron pretty much talking non-stop.  Luke was very attentive and kind, checking on us often with a big smile. 

A few young men walked by our table.  The stare one of them gave Aaron made me want to tell him to take a page out of Luke’s playbook.  Aaron is NOT an alien so quit looking at him like he is, I wanted to yell.  Although as I have often said, Aaron would think looking like an alien is super cool!

 I did have to monitor situations sometimes as we sat in our booth that Aaron wanted.  He turned to stare at the people sitting near us, uncomfortably so, and I had to remind him to turn around and not to stare.  

“I just wanted to see what they were eating,” he explained.

Then came the reminder to not point at the large group of people behind me as he informed me that they must be having a party.

“But I just think they’re having a party,” he told me as he pointed again!

Luke stopped again to check on us.

“Can we have chips and salsa to take home??!!” Aaron loudly asked while I protested and Luke said, “Sure!!” much to Aaron’s happy laughing delight.

Finally, Aaron was full, and we were ready to go.  As we stood up, Aaron edged slightly close to the woman in the booth behind us as he stared down at her plate.  I was trying to gently pull him back.  Her husband eyed Aaron suspiciously and I hoped to catch his eye and apologize but he was fixed on Aaron.

I again explained to Aaron how inappropriate and embarrassing that was as we walked away while he again explained that he just wanted to see what she was eating.  

And again, I ran interference as we passed the hostess desk, and he smelled the scent of those toothpicks.  I succeeded in averting the toothpick theft this time as the eyes of the host eyed Aaron once again.

We made it inside our hot car.

WHEW!!

Another lunch on the books.  

Another group of people with varying impressions of our Aaron.

Another reminder that when an Aaron walks into your life for even this brief time, just smile like Luke…disregard Aaron’s pointing…understand that he is curious about other people’s plates and parties…and whatever you do…

DON’T STARE!!

I just might let him point at you and stare back!  

Much To Them

Some time ago I was fixing Rice Krispie Treats.  Aaron stood and watched for a minute, and then asked if he could eat some marshmallows.  Since I have never been a big fan of eating marshmallows that aren’t in Rice Krispie treats or in my holiday fruit salad, I told him that I wasn’t sure if he would like them, either.  He wondered why.

“Well, they’re mostly puffed sugar,” I told him. “There isn’t much to them.”

“There’s much to them to me!” he answered in no uncertain terms.  

Aaron didn’t realize it, but he had perfectly described how he runs his life.  What would probably seem superfluous to us is not viewed that way at all by Aaron.  Let me give some examples of what is important to Aaron in his autistic world.  Not just important, but absolutely necessary.

Aaron set the table one Christmas.  Look at his multiple forks and spoons.  At least he arranged them neatly.  He always requires several forks, spoons, and sometimes knives, no matter what he is eating.  There’s much to them to Aaron!

There is also much to the number of plates and bowls Aaron wants when he eats.  I’m so thankful for my dishwasher!

When Aaron “goes to bed” at night he reads, listens to music, works on his sticker book, and sometimes plays a game.  He starts this routine early.  A big element of his bedtime is to arrange special items on his bed in just the perfect spots and order.  This includes a stack of greeting cards that he has saved over the years, a cat book that he isn’t reading but that he must have on his bed, his back scratcher, and various items.  I just shake my head but there is much to them to Aaron!

Aaron was eating a bag of popcorn the other day.  Look at the bag and you will understand why Aaron kept telling us, “I love ridiculously cheesy popcorn!”  Or “Tomorrow I want to buy more of that ridiculously cheesy popcorn.”  And “I seem to like this ridiculously cheesy popcorn.”  What seemed ridiculous to us meant much to Aaron.  What’s printed on the bag is part of the name, people!  We just smiled.

Yet there are times when the things that mean much to Aaron can cause great frustration and anger when they don’t work out as he expects.  One of the biggest issues for him is when his schedule is disrupted.  Whatever…or whoever…causes the disruption is often the object of Aaron’s deep frustration.  His tongue can be hurtful, and his anger can be deep when things don’t go his way.  We work on that all the time and praise him when he handles change well, like he did at Christmas.

It’s easy to get very frustrated with Aaron when he won’t budge out of his routine…won’t quit talking about the same topic of interest over and over and over…runs out to our neighbors when they’re taking a walk so he can talk to THEM about said topic…won’t wait patiently for hardly anything…and so many other issues.

Autism is so complex, and everyone is different.  Yet every single autistic person has those tightly held focuses that are “much to them,” and they are not going to let go of those things.  

It’s best to try to understand that fact and then work with them with as much love and understanding as you can muster.  

I know from many years of experience with Aaron that it isn’t always easy, but it’s always best to attempt to approach issues from his viewpoint to better understand why on earth he’s reacting the way he is.  

And always, eventually…when the dust settles…to show him by my words and actions that he matters.

To show him that his unique ways are worth my time…that “there’s much to them to me.”

And therefore, Aaron, “there’s much to YOU to me!”

Am I Ready?

It was November 7, 1984.  Gary and I lived in Colorado Springs.  I was one week into my 9th month of pregnancy with our first child.  Gary had just returned home from flying his Army Cobra helicopter.  I headed up our stairs when a pain hit me.  Gary saw me from our bedroom as he was changing out of his flight suit.

“Now?” he asked with surprise.  

I soon knew that, yes, the time was now.  We hurried to Fort Carson and just a few short hours later we welcomed Aaron into the world…into our world.  

I had been busy making all his nursery items.  The yellow and white gingham curtains, bumper pad, and changing table cover were waiting on Aaron.  But there were still things to do, like putting the crib together and finalizing all the other details of his cute yellow duck nursery.  We just weren’t all the way ready for Aaron to join us three weeks early!

In so many other ways over the 40 years of our life with Aaron, I have found myself still not ready.  Not ready for this journey of Epilepsy, Autism, and having our adult son still living with us.  Not ready for the hundreds of ways that our life is not at all what we thought it would be as we held our little 6 lb. 4 oz. squirming bundle in that old military hospital on Fort Carson.

In so many ways, Gary and I are set apart from our peers even at this stage of our lives.  We are not free to come and go as we might wish.  Aaron is entwined in every decision we make.  And when I meet someone new and we are getting acquainted, the usual response when I tell them that we still have our adult special needs son living with us is, “Oh.”  Most people don’t know what to do with that scenario and so they quickly move on to other topics. 

Aaron can be so funny.  He is just who he is, too, especially in public.  But even that can be a bit embarrassing to us as he does his Aaron things, oblivious to what others are thinking.  Like sitting in the grocery aisle to examine his latest food find.

Or sitting on the floor in every waiting room now so that he can work on his sticker book, even rearranging a chair or table if needed.

I have thought a lot about Mary especially now as we retell the Christmas story at this time of year.  When Gabriel told her that she would become pregnant and give birth to Jesus, God’s Son, she humbly said, “Behold, I am the servant of the Lord; let it be to me according to your word.”  

She must have experienced so much embarrassment as her condition became known.  Did anyone other than Joseph really believe her story?  The gossip, the looks, the questions…how she must have been set apart from everyone in that small town.  

Mary gave birth far from home, surrounded by animals in a dirty stable.  Not even her mother was there to help her.  I doubt that the scene was like the ideal pictures we see on our Christmas cards. 

Then the move to Egypt to escape Herod and coming back to their hometown of Nazareth a few years later where everyone knew Mary’s story of her past.  

Was Mary ready to be the mother of Jesus?  Ready for the turmoil that surrounded Jesus? Ready for the fear as she watched Him being hated and persecuted?  Ready for the extreme heartbreak as she watched him tortured and put to death?  

I doubt that she was.  But she had already made the most impactful decision of her life when she yielded to God’s will for her life.  

That same yielding to God is what brings me the deepest peace as well, even in the fear of Aaron’s seizures.

Peace, eventually, during the frustrations of his behaviors.

I know, and so can you, that “…the God of peace…even Jesus our Lord, will equip you in every good thing to do His will, working in us that which is pleasing in His sight, through Jesus Christ, to whom be the glory forever and ever.  Amen.”   (Hebrews 13:20-21)

We don’t know what it is that will please God in our lives.  

But we can be ready if we know and follow Him, trusting our loving God as we, like Mary, say, “May it be to me according to Your word.”

The best gift we can give Jesus is our heart and our will.

May each of you have a very blessed Christmas season as we celebrate the birth of such a Savior!  

Lean On Me, Aaron

Yesterday Aaron and I went to his annual PCSP meeting.  How many years have we had these meetings?  More than I can nearly remember.  

His case manager and I decided several years ago to hold our meeting at one of Aaron’s favorite restaurants, Carlos O’Kelly’s.  Aaron really doesn’t like meetings that discuss him unless we’re letting him do all the talking about really important stuff.  You know – matters like whether Pluto is a planet or not, what solar flares are, and are black holes really sucking in stars?!  But mulling over matters of his likes and dislikes, what he is or is not allowed to do at his day group, what his goals are, and so on and so forth…well, Aaron would rather leave the room and find someone who IS wanting to hear him talk about planets, flares, and black holes.  But put a plate of enchiladas, chips and salsa in front of him and he’ll endure our needless talk.

Aaron had gotten out of bed super early the past two mornings.  Space videos on YouTube were calling to him, I guess.  As we sat in our booth munching on chips and salsa, he started leaning and leaning until finally he was resting against me like a little child.  

I eased him over and he sat straight for a couple minutes, but then he began leaning into me again.  I knew that he was sleepy from his very early mornings and from his meds, but still I kept propping him up so he could eat and participate in the meeting if needed.

Later, as I drove us home, I looked over at him sleeping soundly in his seat.

  

He is sometimes showing that age is creeping up on him.  He even seems a little feeble at times, like he did as he leaned on me during lunch.  I know that seizures are taking a toll.  He has memory loss, tremors, drooling sometimes, and other effects of both seizures and medicines.  

My heart is stirred with so much love for him.  So much concern for his life now, and for what the future will hold for him.

Yet there are those other moments, too…more and more, it seems.  Moments when Aaron is frustrated when things are not going his way at his time.  He is becoming more impatient with waiting, more set in his routine, and more expressive when those frustrations mount.

Therefore, Gary and I are finding ourselves more stretched on some days.  Our own frustrations mount along with Aaron’s.  Stress seeps through every crack in our strong armor.

I look at Aaron leaning on me, and I know that he needs me when he is struggling, both physically and emotionally.  His reactions are often beyond his control.  Sometimes that fact is hard to remember.

So, who do I lean upon?  

God.

Yes, Gary and I support each other.  I have amazing friends who walk a similar journey to ours.  I have great family on both sides.

But it is God Who leans down to me as He did the other night and fills me with deep peace even as the storm swirls around me…Who understands my struggles…Who speaks comfort to me…Who assures me with these words:

“Trust in the Lord and do good; dwell in the land and cultivate (feed on) faithfulness.”   (Psalm 37:3)

I can feed on so many things like anger, comparisons to others, resentment…the list goes on.  

Or I can obey God and lean into Him.  He understands my need.  And I must understand my need to trust Him and do good.

To feed on faithfulness even when I just want to walk away.

Faithfulness to God, and faithfulness to our Aaron.

Knowing that this is also true:

“Commit your way to the Lord, trust also in Him and He will do it.”  (Psalm 37:5)

Commit.  Lay on God’s shoulders the heavy burden.  

He is strong enough for all my burdens and He is there for me to lean upon when I am tired and done.

And oh, I cannot express enough about the grace that God gives me to continue putting one foot in front of the other, day after day with Aaron.

It’s not one bit about how strong I am or that God gave Aaron to such an amazing parent.

But it IS all about how God meets me in my most down moments with His sweet peace and His words that speak such joy and comfort to me.

And as I learn to lean on God, I can be there for Aaron when he needs to lean on me. 

God holds me up so that I can do the same for Aaron.  

That’s even more amazing than all the black holes in the universe!

Cue The Music, Aaron…Or Not

Aaron and I were hurrying out the door a couple mornings ago so I could take him to Paradigm, his day group.  I kept feeling like we were forgetting something.  We were three miles from the house when I remembered what we forgot.

Aaron’s wallet!  

He absolutely loves his almost daily excursion to Quik Trip, where with his seven dollars he has his pick of foods…mostly of the junk variety.  Forgetting his wallet would not do!  I could have given Aaron some money, but all I had was a $20 bill, and believe me when I say that Aaron would have spent $19.99 on that junk variety food.

I reassured a panicked Aaron that we would go back to get the wallet as I headed for the next exit.  He was very relieved.

Immediately he reached over and turned off the music that was playing.  I knew why he did that, but just to test my theory…or more like a confirmed fact based on years of solid experience…I slyly reached down after a few seconds and turned on the music.

He didn’t miss a beat and neither did Whitney Houston as his arm shot out and pushed that off button once more.

“I’ll turn the music back on after we get my wallet,” he informed me, not knowing that I could have told him that about himself. 

This little episode is just one of the many ways that autism affects Aaron’s life.  He lives by a strict set of rules that sometimes only he understands but that we must obey if his life…and therefore, ours…is to be happy.

He does this same thing as we go to Meals on Wheels every Thursday.  He won’t play his music until we have picked up our food at the Senior Center and are actually beginning our route.

The wallet episode may have been a different situation, but the same rule applies.  Our diversion to go back home for his wallet had interrupted our trip to Paradigm.  This interruption was not a part of the actual drive.  Since his music is to be played on the actual drive, that music must not be played on the non-actual drive.

Are you following?

If you lived with Aaron, you better be!

It’s a matter of principle with Aaron.  

He follows this principle when we are watching a program.  Aaron will have his snack ready.  The bag or jar will be open.  The plate of food will be placed on his ottoman or his lap.  His napkins are nearby in their holder and his multiple pieces of silverware are ready to go.  His drink and straw are within easy reach.

But nothing is touched until the first scene of the show…and most critical, the opening credits…are completed and the real honest-to-goodness show has begun.

I have sat nervously by as his ice cream started melting before he will pick up his spoon and start to eat.

It does no good for me to try to make Aaron hurry up and eat, or turn his music back on, or change any other scenario of his life in which this principle applies.

Not even my deep sighing has any effect on Aaron.  He probably just thinks Mom is old and weird.

I love seeing these intricacies of the autistic mind that Aaron has.  Even when his internal rules drive us crazy, they are still very fascinating to observe.  And understanding those rules and allowing them when we can, makes Aaron’s life… and ours…much easier to navigate.

He not only follows the beat of a different drummer, but he also tells the drummer when he can beat his drum and when he can’t!