Patience – He Said What?!

Magical and Maddening

“Aaron, look!!” I exclaimed one recent night as I closed our family room blinds. Aaron walked over to join me at the window. There, emerging from the grass in our front yard, were dozens of fireflies. Lightning bugs, we called them where I grew up in West Virginia.

Aaron thought they were very cool! He insisted that Gary come to the window as well, and so we stood there together for a minute, enjoying the sparkling little bugs.

A few nights later, Gary and I sat on our front porch after the stifling heat of the day had subsided somewhat. It’s nice for us to enjoy a few moments of quietness and of being together, just the two of us without Aaron’s loud interruptions. As dusk fell and darkness was encroaching, up from the grass once again came those beautiful fireflies.

It was captivating watching their glow, so many of them combining into a magical light show right in front of us. So peaceful.

Then…BAM!!

Out on the porch rushed Aaron, who is rarely quiet. There went the peacefulness of our front porch evening!

“MOM!! Are we watching a Little House tonight?” he asked, knowing the answer.

I assured him that we would watch an episode, as always.

But, as always, that wasn’t enough for Aaron.

“When?” he asked. “Can we do it now?”

I knew what was ahead but wanting to remain in the magic of firefly glow I told Aaron that I would let him know when I was ready. This answer never suits Aaron.

One of the very hardest things for Aaron to do is to wait…on anything. He especially finds it nearly impossible to wait on me to watch a program with him when HE is ready. He escalates quickly into anger at those times, no matter what I say or how well I prepare him for the inevitable wait. That night was no exception.

Our evening was quickly reverting from magical to maddening.

Such is often the life of a caregiver.

My blogging friend, Cheryl, is the author of a caregiving blog written out of her experiences as she cares for her husband who has Parkinson’s. Our situations are very different but also very similar. I have loved her insights and her godly wisdom.

In one recent blog…linked here… (https://parkinsonscaregivernet.wordpress.com/2020/06/13/similar-yet-different-but-really-similar/) – she wrote:

“But we live for the moments of joy: seeing our loved one smile, hearing them recount experiences from the past, watching them respond to family and friends, hearing them tell a favorite joke. Those moments may be brief, so we hold them sacred in our hearts and bring them to mind when the times are difficult. Another is the joy of knowing we are doing our best, that we are doing the right thing, that we are doing God’s work here on earth by caring for our loved one. Let’s not forget that, especially when the moments are difficult or uncomfortable.”

The difficult moments with Aaron often involve his autistic behaviors…his demands that life revolves around HIS order and expectations of how things are to be. During those times, no one else’s desires or needs are considered by Aaron to have importance.

Maddening.

On our firefly night, we told Aaron that he needed to wait. We tried to get him to enjoy the magical lights in our front yard but he was blinded by his own frustrations and cared nothing for the beauty around him. Only one thing mattered. And he wanted that one thing NOW.

Anger intruded into our evening and stood on our front porch, as opposite in its effect as could possibly be when compared to the earlier joy of time together with Gary among the little sparkles in our yard.

Later, the anger was gone as Aaron and I watched our show. Aaron is usually oblivious to the effect he has on us during those times as he brushes off the recent outburst and is happy in his bubble again, where all is well.

Oh, that it was so easy for me to do the same!

Like Cheryl said, though, it’s important to hold the moments of joy sacred in our hearts and in our memories. And to know that we, as caregivers, are doing God’s work here on earth.

My heart this morning was heavy as I helped Aaron during his second seizure…knew that I would have bedding to wash later…canceled my hair appointment…and tried to still my worried heart about other matters.

I had finished my normal Bible study and so I opened my Bible randomly to see where my eyes fell. I love doing that! It’s like opening a treasure box that I just unearthed, excited to see what’s inside!

And look what God gave me!!

“But ask the beasts, and they will teach you; the birds of the heavens, and they will tell you; or the bushes of the earth, and they will teach you; and the fish of the sea will declare to you. Who among all these does not know that the hand of the Lord has done this? In His hand is the life of every living thing and the breath of all mankind.” (Job 12:7-10)

It’s all in God’s hands!

Aaron…me…Gary…others I love…our world…

All life and breath is in God’s hand. All of creation declares that truth!

Now it’s up to me to trust our loving God and to rest in His hand. And to…most importantly…trust Aaron into His hand and know that God put Aaron into our lives for a purpose I may never know on this earth.

But may I trust God’s knowing. Trust and know just as much as the beasts and the birds and the bushes trust and know Who has done all this!!

Fireflies know, too, I am sure.

Maybe that’s why they shine their magical lights for all to see!

May I do likewise.

Photo by National Wildlife Photo Contest entrant Radim Schreiber.

Where There’s A Will…

Autism 101: Individuals with autism tend to “…have eccentric preoccupations or odd, intense fixations… They tend to follow their own inclinations regardless of external demands…” (Karen Williams)

You got that one right, Karen!

In our home, living with Aaron means that Gary and I also live with his fixations. Sometimes his obsessions are funny. Sometimes they are maddening. Sometimes they are exhausting.

But always, Aaron will…to finish the above title…find a way to fulfill his inner demands of how his life is to be lived.

Like his mealtime routine. Aaron will always, always, always, have multiple utensils or plates or bowls of whatever kind he desires for each meal. Here was his place setting recently as he ate lunch in the family room.

We have come to expect this, and we don’t even try to correct him. He will make sure to have the proper number of knives, forks, or spoons for every meal. I am just very thankful that I have a dishwasher!

How about movie credits? Gary and I watched a movie yesterday. Afterwards, we wondered where the movie was filmed. We watched the credits to find our answer, which happened to be at the very bottom of the huge stream of names and job titles. And we laughed at ourselves, realizing we had become…for that moment…just like Aaron.

Aaron…who watches movie credits with as much focus as he watches the movie.

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Aaron loves his Star Light that he turns on every night. It was a Christmas gift from Kyle and Andrea, and he has turned it on every night since then. Aaron very quickly developed his own rules for his Star Light. He wants it turned on just as he is getting into bed.

One night, Gary came upstairs shortly before Aaron was actually getting INTO his bed. Aaron wanted Gary to see his Star Light, so while Gary stood in the doorway, Aaron turned the light on. Gary oohed and aahed, Aaron was very happy, and then off went the light. Maybe two minutes later…tops…Aaron turned the light back on because he was now getting INTO bed and it was the REAL time to turn on his Star Light.

Back to Karen Williams’ quote: Aaron will follow his own inclinations regardless of external demands.

Gary and I are usually the ones making those external demands in many cases.

Let’s talk sweaters…Aaron’s sweaters, to be precise. Of course.

Aaron LOVES his sweaters. Certain sweaters are better than others, and he will wear them until they are worn to bits. He had this old sweater for several years, but it was his very favorite. He wore it or carried it or had it nearby, inside and outside…always.

This year, for Christmas, I ordered him two new sweaters. They are long and flowing, the kind he loves. And love them he does!

He wears one pretty constantly. Inside and outside, his sweater is being worn.

He also wants to wear it to bed, under all his necessary covers…including his new weighted blanket that he loves. This means that sometimes he gets too hot, but he will rarely agree to sleep without his sweater. This happened on Saturday night when he talked about being too hot the night before.

Enter the external demands, made by me. I reminded him that he should remove his sweater before climbing into bed. He was reluctant, but finally agreed to those external forces trying to rearrange his internal inclinations.

We discussed it on his monitor when I went into my bedroom. We discussed it as he stood at my closed bathroom door while I tried to brush my teeth. And he continued to discuss it with Gary after he clomped down two sets of stairs to Gary’s study.

We thought we had won. We were the new KING AND QUEEN OF EXTERNAL DEMANDS!!!!

Silly us.

Soon Gary came upstairs. Aaron called out to him from behind his closed bedroom door, wanting one last word with Dad.

And last word it was…for there lay Aaron.

Wearing his sweater.

On TOP of the covers.

We removed our King and Queen crowns as we climbed into our own bed.

Instead, we wore smiles.

Why fight the inevitable, right?

Aaron will always find a way.

Caught Up In Crazy

I very innocently planned a grocery trip today to Aldi. I often go to Aldi on Friday mornings. Not a big deal…so I thought.

Also, not a big deal to take Aaron with me…so I thought.

I wasn’t surprised that the parking lot was rather full. I WAS surprised when Aaron and I headed for the carts to hear a woman call out to me, telling me that Aldi wasn’t opening until 12:00. Somehow, I missed that memo.

Thankfully, Aaron and I only had to sit in the van for less than 10 minutes. Out we hopped, again, grabbed our cart and had to walk to the back of a long line. Never…not Thanksgiving…not Christmas…not pre-blizzard…have I seen a line waiting to get into Aldi.

The lady behind me mentioned that this was crazy. Yes, it was crazy. So was the line all the way up the first aisle headed for the produce, and the line waiting for eggs, and another for dairy products. All through the store, in nearly every aisle, we were bumper to bumper carts and shoppers.

So much for social distancing.

I saw some things.

I saw concerned faces.

I saw tired children.

I saw long lists in shopper’s hands.

I saw smiles, too.

I saw kindness from many of the harried people there.

I saw a very elderly and frail woman with beautiful white hair sitting on the counter where her caregiver packed their groceries…and she was sound asleep, her head bowed, seemingly oblivious to the noise around her.

And I saw Aaron as we stood in the check-out line, his arms hanging down and his hands folded together while he stared down at the end cap display beside us.

He was somber and quiet, very uncharacteristic of him when shopping. Usually he rubs his hands together happily as he stands in line talking about a game or a movie or what he wants to eat for supper or any number of other things. Usually I must remind him to talk softly.

But not today.

Today, Aaron saw and felt the crazy all around him. I was calm all through the store, talking to him and to others, trying to maintain a sense of normal.

That’s because I know how necessary normal is to Aaron.

But today was anything BUT normal, and Aaron was not to be fooled.

I’ve written about how Aaron is very tired of this Coronavirus…how done he is with store closings and restaurant closings and crowds and shortages.

I really didn’t expect Aldi to be part of the crazy today. I didn’t expect our trip there to add to Aaron’s angst.

Yet there we were, sucked into the crazy while not wanting to contribute to it. I was just there to get normal groceries. But the crowds…the lines…the empty shelves…the waiting…the jostling – all made Aaron most unsettled.

“Mom,” he said. “You’re just here because of the crazy Coronavirus!”

I tried to assure him that I was there because of needing normal groceries. But Aaron wasn’t buying it.

All through the store…thankfully in a quiet voice…Aaron told me over and over that I was a part of this crazy because of the Coronavirus.

“You’re just buying that because of Coronavirus,” he muttered as I bent over the sandwich meat.

“You just want that because of the Coronavirus,” he said again as I added coffee to the cart.

Seeing him in the check-out line, so still and serious, made me very sad. All the times I’ve wanted him to be quiet and now he was…but for a reason that yanked at my heart. He was most uncomfortable…most uneasy…most worried.

This whole scenario of our current lives is new to me…new to all of us. Watching Aaron’s manner and seeing his worried face was a real insight into how this strange time is new to him as well and is affecting him.

Normal is gone for now, and for who knows how long. So, for many of us with special children…children who respond strongly to their environments…this may be an extra stressful time.

Let’s encourage each other and pray for one another.

And if you’re out and about in the crazy, and you see a mom with a special-needs child, give her an extra big smile, would you?

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The Cold Snap

We have a little bush in our front flower bed, a perennial that we planted probably 17 years ago. In fact, I can’t even remember the name of this little bush, so I just call it that – Little Bush. This hardy bush keeps its leaves on all year long, which is part of its charm. In the summer the leaves are green with some maroon mixed in, and in the fall and winter the leaves are mostly maroon. Small berries also grow among the leaves in the fall, so by Christmas it seems to be all decorated for the season. I really like my Little Bush!

Last year, though, probably starting in March, I noticed that Little Bush didn’t look so healthy. Its leaves that always stay were falling off, until finally only stark, naked branches were there.

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This was quite unusual, and I was worried. Was I finally going to lose my long lasting little bush? Was there something that I could do to save it?

I kept looking at Little Bush, wondering what had happened. Then one day an article in the newspaper caught my attention. The headline said something about how certain trees and bushes in Wichita were losing their leaves. I read the information with interest because of my little bush. The writer explained that earlier in the winter we had experienced several nights when temperatures had dipped to -10 degrees or lower. These frigid temperatures had damaged some trees and bushes that normally held their leaves all winter.

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There was my explanation, I thought. This cold snap had damaged Little Bush. Then the article went on to assure gardeners not to worry but to be patient…that most trees and bushes would begin to grow again in the warmth of spring because their roots were not damaged by the extreme cold.

So I waited and I observed. I checked my little bush routinely and sure enough one day I saw tiny new leaves emerging on the empty twigs.

As time went on and the days passed, the warm spring sun and the rains did their restorative work. Little Bush grew…

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And grew…

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Until finally Little Bush was back, as pretty as ever!

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I’ve had some cold snaps in my life, too…times and events that came unexpectedly and with little or no warning. Everyone has.

Cold snaps hurt. And they take many various forms.

An illness. A diagnosis. Sudden death. Lingering death. Rejection. Accusation. Betrayal. Job loss. Divorce. A prodigal. Regret. Guilt.

I remember my dad’s victory over lung cancer…how relieved and thankful we were when treatments were complete and he was in remission. But before the five-year mark came the blood work and the testing and the phone call…liver cancer…inoperable…four more years of chemo…hospice…

Cold snap. Recovery. Then another cold snap.

But through it all, our family verse brought us each the warmth and the hope that we needed: “God is our refuge and strength; a very present help in trouble.” (Psalm 46:1)

Sometimes our hard times…our cold snaps…make us feel like David when he said, “My tears have been my food day and night, while they say to me all day long – “Where is your God?” (Psalm 42:3)

Where is God in our pain? Oh, He hasn’t gone anywhere! He’s a very PRESENT help in our trouble, remember? He’s right here with us.

Right after David said his tears were his food, he said, “Why are you in despair, oh my soul? And why have you become disturbed within me? Hope in God, for I shall again praise Him for the help of His PRESENCE.” (Psalm 42:5)

My little bush had hope because its roots were secure, and so do we who know and follow Christ. We have hope in our despair because we know that God is sovereign…He is in control…He has a plan…He is present…and He has a purpose for the cold snaps that rock our world.

“I called on Your name, O Lord, out of the lowest pit. You have heard my voice. Do not hide Your ear from my prayer for relief, from my cry for help. You drew near when I called on You. You said – “Do not fear!” (Lamentations 3:55-57)

God is near in our pain…near in our pondering…near in our praise that arises even out of hurt and unanswered questions.

I love these lyrics of Jeremy Camp’s song, He Knows:

All the bitter weary ways

Endless striving day by day

You barely have the strength to pray

In the valley low.

And how hard your fight has been

How deep the pain within

Wounds that no one else has seen

Hurts too much to show.

All the doubt you’re standing in between

And all the weight that brings you to your knees.

He knows

Every hurt and every sting

He has walked the suffering.

He knows

Let your burdens come undone

Lift your eyes up to the one

Who knows

He knows.

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Ever Long

Patience is a virtue, so someone said, but I can tell you that it is not a virtue that Aaron typically possesses.

On an average weekday morning, when Aaron is waking up to the smell of his coffee that I bring to his room, he is also waking up to the reality that he will soon be going to his day group, Paradigm. Hope springs eternal, though, that he can stay home. It’s not that he doesn’t like Paradigm. It’s just that he likes being home more.

I fully expect each morning to be the same and am surprised if it isn’t.

Mom, I have a headache.

Mom, my stomach hurts.

Mom, I didn’t sleep much.

Mom, mom, mom…followed by various stay-at-home excuses.

I leave him to his coffee and his conniving as I go about my own getting-ready morning routine…a routine that Aaron knows all too well.

Eventually, almost always, Aaron comes around and decides on his own to go to Paradigm. The problem is that when Aaron decides to go, he wants to go now.

Like, NOW now.

If Aaron walks into the bathroom while I’m drying my hair, he knows that after drying of the hair comes fixing of the hair.

After fixing of the hair, comes applying of the make-up.

Applying of the make-up may be short…meaning only a dusting of powder and a swipe of blush…and mom is good to go.

But sometimes, after the powder dusting and blush swiping, Mom moves to the dreaded eye make-up.

Eye make-up takes way too long in Aaron’s book on a morning when he has resigned himself to his Paradigm fate. He wants eye make-up to go away…to not be applied. He knows that if Mom moves to her desk in the other bedroom, where she seems to like that light from the window, then her eye make-up is really going to happen.

And now is not NOW!!

NOW must wait.

Waiting requires patience…that virtue that Aaron rarely possesses.

One recent morning, as Aaron hovered behind me in my bathroom watching me in phase one of my getting-ready routine…drying of the hair…he decided to broach the dreaded subject of my make-up amount.

“Mom,” he began, “so when you DO put on make-up, are you going to do it ever long?!”

He sounded positively Shakespearean!! 🙂

On many mornings, however, his impatience with my make-up routine can make him very angry. It’s not that he has a thing against make-up. It’s that he has a thing against waiting.

Just like I often begin my days with Aaron’s lack of patience, I also often end my days with that same impatience brewing in Aaron’s mind. This time his testy attitude surrounds the fact that he knows we will watch a show just before bed. We are working our way now through the series “Dr. Quinn: Medicine Woman.”

Last night, being New Year’s Eve, Aaron thought a great way to celebrate would be to watch TWO episodes. He came downstairs at 7:30 to find that I was watching an end-of-year special that I had no idea I would watch and that I had not run by him for his approval.

This was not good. Not good for me or for Aaron.

He let me know that he wanted to watch Dr. Quinn now.

Like, NOW now.

I told him no.

I told him that we would watch Dr. Quinn at 8:00.

Waiting for 8:00 was ever long for Aaron. And he let me know, as he went up the stairs to his room and down the stairs to the family room…over and over and over…that 8:00 was unacceptable.

I stuck to my guns, but not without facing Aaron’s wrath.

In fact, I finally marched to my bedroom…got my purse…put on my coat…and told Gary that I was going out for a drive, in order to clear my head.

Aaron just watched, not saying a word. I do believe he was scared. While I was gone, he stayed in Gary’s study. Gary was a captive audience with his leg all bandaged and propped up from his recent foot surgery.

I talked to God while I drove. I told him that I feel a little blank anymore, wondering what He wants to show me or teach me in this life I live. I told God that I want to be patient with Aaron, and that when I’m not, I don’t want to sin in my impatience and anger.

That’s the tough part…not sinning when I am also the one not exercising that virtue of patience.

While I was out driving, I saw a section of beautiful lights still on full display in a neighborhood. I went home, got Aaron, and together we drove through the pretty lights.

No lecture. No mention of his anger.

Just enjoying the bright beauty around us.

It was calming to us both.

And it was surprising to Aaron, I could tell.

Surprising to him that I wanted to simply show him something pretty…something that he loves…when he had just been so mean to me.

Aaron needs to learn to wait. It’s hard on both of us as I continue to try to teach him that virtue.

I read this morning some of my old notes from my Genesis Bible study I recently completed. In talking about how Abraham had to wait on God to give him a son, Joyce Baldwin said this:

“God’s delays are not God’s denials.”

A delay doesn’t mean no.

To prove His promise to Abraham of a son to come, God had Abraham look up into the heavens. God told Abraham to count the stars…the bright shining stars. He told Abraham that so would be his descendants, innumerable like the stars up above.

But the promise wouldn’t happen now.

Like NOW, now.

But Abraham, while watching others have sons and grandsons, had to wait on God to fulfill His promise in a most unlikely way and time.

Abraham had to believe God…had to trust God…and it was counted to him as righteousness.

God did fulfill His promise to Abraham, in His own time. Not in Abraham’s preferred time.

And this is where and how Abraham grew in his faith. As Baldwin says, “Faith rests on the fact that God is faithful, and when we take God at His word, we prove for ourselves His faithfulness.”

Aaron needs to learn to trust me and to be patient when he must wait on something.

I need to learn to trust God and to be patient when I must wait on Him as well.

Waiting on Him to show me what I need to learn…to give me grace for life with Aaron…to not compare myself to others…and a myriad of other reasons and ways that I must wait on God.

Bright lights calmed me and Aaron.

Bright stars calmed and settled Abraham in his faith.

Because God is faithful, I can have faith. Faith in God even during the hard times.

Faith to wait, even when fast answers don’t come.

Aaron and I did watch two Dr. Quinn episodes. It took ever long, but we did.

I kept my promise…and so does God.

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I Love This Place!

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

Gary and I knew that this was going to happen:

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

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

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

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

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

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

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

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

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

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

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

Normal! Right?!

Wrong.

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

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

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

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

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

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

Just so exhausting.

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

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

Until he thought of Christmas lights.

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

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

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

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

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

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

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

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

But this place is where God has put us.

Aaron is God’s gift to us.

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

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

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

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

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

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

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

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

Bright like the lights of this beautiful season!

In the Crosswalk

What is it with Aaron and crosswalks??!!

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

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

Oh, the stories!

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

I told you it was unsettling.

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

Several times in the same manner mentioned above.

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

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

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

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

And doing it in that same disturbing manner!!!

IN THE MIDDLE OF THE CROSSWALK!!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Those crosswalks can be very, very irritating and draining.

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

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

My apologies to all the drivers at that crosswalk.

It was memorable, I’m sure. 😊 😊

Aaron usually is.

Did Someone Say, “Time CHANGE?!”

I am 99.9% certain that whoever thought up all this time change business did not have a child living with them who had autism. Specifically, a child with autism who has as one of their obsessions the desire for living life with precision timing.

Such is our Aaron.

Aaron wears a watch every day of his life. If his watch breaks, time for him stands still…and time for us is nearly unbearable until the broken watch can be replaced. Trust me, we take as little time as possible in finding him a new watch. It must be a specific watch, one with numbers all around…a second hand…and the day and date feature.

Heaven help us when the day and date feature needs to be adjusted! Aaron doesn’t have time to wait for that, either, and when I mess it up…which I so often do…then the world is off balance for Aaron until Dad is able to come to the rescue.

Many of you have heard lots of stories about Aaron’s precision with time. For instance, on the weekends Aaron wants to eat lunch at 12:00 noon. This often happens:

Me: Aaron, do you want to eat lunch?

Aaron: Yes.

Me: What do you want to eat?

Aaron: Can I have pizza?

Me: Sure. I’ll fix it now.

Aaron: I want to eat at 12:00.

Me: Well, it’s almost 12:00.

Aaron (pushing his sleeve up to look at his watch which is worn halfway up his arm): No, Mom! It’s 11:56!!

I sigh, exercising my lungs as I so often do with Aaron, and make sure we wait until 12:00 on the dot to start the lunch process.

Here’s another familiar scene:

Aaron: Mom, I woke up at 7:58.

Me: So, you woke up around 8:00?

Aaron (looking at me as if I had three eyes but no brain): No! I woke up at 7:58!

I began preparing Aaron for the dreaded time change on Saturday afternoon. When we finished watching our DVD before bed, he glanced up at the clock in the family room.

“Mom,” he began. “It’s 10:47, but it’s really 9:47, right?”

I assured him he was correct as he followed me into the kitchen. He carefully watched me change the stove clock, the microwave clock, and the coffee pot clock. Things were progressing smoothly.

Little did I know.

The bedtime routine was moving along normally when Aaron sat on his bed to write the time in his logbook. This logbook in which Aaron records…precisely records…his time to bed and his time to get up. Every. Single. Day.

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Aaron stared at his complex weather station clock beside his bed…the one that needs a person with an engineering AND rocket science degree to change the time.

“MOM!!!! My clock says 11:02, but it should say 10:02!!!”

WHY DIDN’T I REMEMBER AARON’S CLOCK?????!!!!!

But outwardly I was the picture of calmness. I told Aaron that I really thought it would set automatically by satellite. Aaron sat on his bed with his logbook open, very still, staring at the clock as if he could will it to change. I stood beside the bed, staring at Aaron as if I could will him to change.

Silly Mom.

He scooted off the bed and headed for the door.

“I’m getting Dad!” he informed me as he left his room.

Thump, thump, thump down one set of stairs.

Thump, thump, thump down the second set of stairs.

Soon I heard Aaron pounding up both sets of stairs. Seriously, he takes stairs like a bull elephant.

And there followed Gary, much slower than Aaron, who was full of purpose.

“Dad, can you set my clock?!” he asked anxiously.

Gary set the clock, Aaron sat once again on his bed with his logbook open, and I stood there waiting hopefully for the time to be entered, precisely.

Aaron stared at his weather station clock. Then he pushed his sleeve up and looked at his watch. He stared again at the blue numbers on his very difficult weather station clock.

“MOM!!!! It says 12:10!!!! It should be 10:10!!!!!”

Oh. My. Word.

Dear Gary, in his tiredness, had set the clock AHEAD an hour. Instead of falling back, we had gone full speed AHEAD…and Aaron was full speed DONE with this crazy time change!!

SO WAS I!!!!!!!!

“Aaron,” I kindly said (despite how UNKIND I felt), “can’t you just lay down, close your eyes, and go to sleep?”

It would have made more sense to tell him to climb Mt. Kilimanjaro…barefoot…in the dark…with no guides…and no supplies.

I wonder what time it was in Tanzania?

Aaron informed me that he could do none of those things. Lay down, close his eyes, or go to sleep.

“Aaron,” I continued (my lips drawn tighter than they had been), “can’t you just wear your watch to bed?”

With that, Aaron once again pushed his sleeve way up his arm and stared down at his watch.

“MOM!!!!” he said, “we need to change the time on my watch!!!”

AAAAAAHHHHHHHHH!!!!!!!!!!!!!

Anyway, I prohibited Aaron from going back to get Gary. I changed the dumb time on his watch. I then sat down on his bed, praying as I started pushing buttons, and somehow someway I was able to change the stupid time from 12:10 to 10:10.

Can you tell I was done? I needed a time out!!!

Oh, but we weren’t done!

Aaron was, once again, sitting on his bed while staring at his ridiculous weather station clock. Whose idea was it to get him this clock anyway??!!

All the bases had to have been finally covered, I thought. Aaron’s just waiting for the minute to change, as he usually does, before he will write down the time.

The EXACT time, for crying out loud!!!

“MOM!!!!” he nearly yelled, “it’s FLASHING!!!!!”

“WHAT????!!!!” I nearly yelled in disbelief. “What’s FLASHING????!!!!”

And sure enough, under the very current and precise time, there was flashing the words, “NO WI-FI.”

“It says, no wifey,” Aaron told me.

“You’re about to hear, no mother,” I wanted to say, but didn’t.

“Here, Aaron,” I said now through almost gritted teeth, “you can just turn your weather station clock around like this and then go to sleep.”

But I may as well have told him to climb….

You get it.

No, Aaron could NOT just simply turn the clock around like this or just go to sleep like that. Not with “NO WIFEY” flashing under the very perfect and totally precise time!!!!

I guess Aaron was spent…or knew that I was…because he finally got under his covers and let me escape to my room.

But soon I heard him thump, thump, thumping downstairs…where he told Gary about the flashing “NO WIFEY.”

Then came the thump, thump, thumping upstairs…and the elephant stomps to my closed bedroom door.

“Mom?” he said. “I’m tired of this day.”

“I know, Aaron,” I told him. “I am, too.”

Never were truer words spoken!!

He walked back to his bed.

He was soon back at my door.

“Mom? Do you think I should just wear my watch to bed?”

“I think that would be a good idea,” I replied (hopefully!).

Again, he was under his covers.

“MOM!!!!” I heard from the monitor in our room, “it quit flashing!!!”

Thank you, Lord!!! I really did thank the Lord!

But if you ask me, it’s high time to change the time change!!

At least it is in OUR house!! WHEW!!

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Keeping Everything in A Row

Aaron was busily preparing his little corner of the world one recent night as we got ready to watch an episode of Dr. Quinn. His typical preparations include his snack or snacks of choice, often placed in a bowl; his drink; his hand towel that is always with him; his blanket that is always over him as if he is a nursing home resident; his Nintendo DS beside him even if not played; his video remote; and his chair and ottoman placed just so.

It’s exhausting, unless you’re Aaron. If you’re Aaron, this is standard procedure and no big deal.

On this particular night, Aaron had chosen his rather new bag of Jolly Ranchers to sit on the end table beside him…the end table that bears the scars of being placed right beside Aaron.

“MOM!!” Aaron excitedly said before he sat down. “Here! I want you to have these!”

He handed me way-too-many Jolly Ranchers, his face full of delight because he loves to share. I hadn’t planned to eat Jolly Ranchers, but I wouldn’t disappoint his giving spirit for the world, so I cupped my hands and took his sweet gift.

He was getting situated under his blanket when he remembered something.

“Wait!!” he exclaimed. “I need to get my trash can!”

Having lived with Aaron for so long, I didn’t need to ask what he was doing. There are times that Aaron will use his trash can…and ONLY his trash can…for certain jobs. For instance, every Christmas Aaron must have his trash can with him for whatever he deems it must hold, despite the large trash bags that the rest of us use.

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For whatever reason is in his mind, he knows when his trash can is the one that is needed for certain trash, and obviously our Jolly Rancher wrappers fit that mold on that night.

Soon we were watching Dr. Quinn, relishing our candy as we happily tossed our wrappers in the correct trash can perched between us…and all was right in Aaron’s world.

Like the Bible verse that says there is a way that seems right to a man, there is most assuredly a way that seems right to Aaron…and he will not veer from it, if at all possible. Pity you if you try to make him do so!

Yesterday, Aaron and I piled in the van for our ride to his day group. Aaron loves listening to music and as we are still in dinosaur mode, we use CDs. Aaron looks at each song’s number as he picks up the CD and checks the back for the song number and name. He rubs his hands together with great enjoyment, laughs, and listens very carefully to each song.

Aaron often sings one phrase from the last song he has heard on his rides. He will sing that phrase over and over, usually at home, while he is on his computer. Never will I forget the time that we stopped to shop at Wal-Mart. The last song he had heard was Shania Twain’s “Man! I Feel Like a Woman!” It was very interesting hearing Aaron walk through Wal-Mart and in his monotone voice saying more than singing…over and over – “Man! I Feel Like a Woman!”

The word “interesting” really doesn’t do it justice. Though I’m sure that he and I were VERY interesting to more than one person on that trip.

Anyway, Aaron had chosen to listen to Brad Paisley. We have several Brad Paisley CDs. Something else that Aaron will do is listen to CDs by the same artist in order of their production date, written in microscopic print on the back of each CD. Print that is seen only by Aaron. We cannot listen out of order. Nope.

We jumped in the van, with Aaron immediately reaching down to find the first CD in order, of course. And of course, he knows that the first Brad Paisley CD in the correct order carries the date of 2003. And the 2003 CD was not in the van.

We were still in the driveway, both of us looking for the 2003 CD, even getting out of the van to check behind our seats. I ended up running back into the house and finding three CDs in the cabinet that he had missed.

“YES!!” he said, “there’s the 2003!!”

His joy was contagious as we drove down the road, his hands rubbing together quickly and his laugh filling the van. What a difference it makes when Aaron can have things this seemingly unimportant set right in his world!

Last night, Aaron sat in his chair in his usual fashion as we watched TV. I noticed that he was pulling loose threads from his ever-present hand towel and rolling the threads up into little balls. Later, as we were on our way upstairs for bed, this is what I saw on the end table.

I just smiled and shook my head. How like Aaron and his life are these little thread balls, all rolled up and placed in a precise order according to Aaron’s plan!

And how important I felt it was for me to just leave them there. I could have told Aaron to come back down and clean up his mess! But this really isn’t a mess. This is Aaron’s order, done Aaron’s way.

It’s really a beautiful picture of Aaron’s mind.

And a reminder to me that there are many times when I must understand Aaron’s way of living…a way unlike my own but of no less value. Not try to brush it off as unimportant or messy or inconvenient, but to remember that Aaron is far happier if he is allowed to keep not only his ducks in a row, but also his CDs and his trash can and his candy…

And his thread balls!

Of course!

Smooth Gliding

Aaron had a seizure shortly after 4:00 this morning, so I kept him home from his day group today. One seizure not only makes him feel bad when he gets up and about, but one seizure can also mean more seizures to come…especially drop seizures that are so dangerous.

As I went sleepily up the hall this morning to be with him, I was mentally trying to remember what my day held that would need to be changed. Fortunately, today was just errand day for me…nothing critical that had to be rearranged, like a doctor appointment for me or for Aaron.

Still, the point is driven home yet again that I am always on call when it comes to living with Aaron. Any caregiver knows what I mean. It’s very difficult if not impossible to commit myself to activities that would demand my presence, like a job or even some volunteer positions. And that’s OK for me, thankfully. God has blessed me with the privilege of being able to stay at home with Aaron.

Sometimes that blessing, though, can turn into a struggle for me. Aaron isn’t always easy to care for. Oh, I can handle seizures and wet bedding and interrupted schedules and doctor appointments and all the rest that goes along with life…life with Aaron.

It’s his behaviors, at times, that wear me and Gary down. Aaron’s ups and downs due to his autism can be exhausting and so very frustrating. Then when I erupt, along comes the guilt and the “I’m so done!” attitude. My own ups and downs are personally exhausting to me on so many levels.

So today, in an odd kind of sad way, has been a reprieve for both me and Aaron. He is far happier when he has no place to go…no schedule to keep…no expectations. And happy Aaron equals happy Mom – though my heart is always sad to see his seizures and the toll they take.

One toll is that Aaron often loses his taste, as he says, after seizures…and today was no different. Nothing interested him for lunch until I mentioned cream of chicken soup. He slurped happily while watching a bit of the old Incredible Hulk television series, leaning back occasionally to hold his head.

Later, I sat down beside him and asked this magic question:

“Aaron, would you like to go get a milkshake?”

How Aaron loves milkshakes!

“Yeah!!” he answered as his eyes lit up. “And can it be a hot fudge?”

I agreed to hot fudge, and Aaron was happy and very ready to go.

When I later told him it was time to leave, he came to my closed bathroom door with his report.

“Mom,” he said. “I have on my shoes and my glasses and my watch.”

Bless his heart. Preparation details for these excursions are very important, even if Sonic is only one mile down the road.

When we got home, Aaron sat on our porch glider with his yummy hot fudge milkshake while I watered the porch plants and swept away some unwanted spider webs. Then I settled in beside him.

It’s a beautiful day today, and our time on the front porch and out in the yard later was so sweet. We examined the veins of the flower petals he pulled off my orange geranium. We talked about the dragonfly that landed near us…about the squawking blue jay we heard…about mosquitoes that drink our blood…about the squirrels that steal all our pecans…about the bag worms that haven’t built any web nests this year…about the bush that needs pruning yet again…and about the molted remains of Cicadas he found.

We examined mushrooms in the back yard…small, medium, and large.

And watched honeybees in the Rose of Sharon blooms, laughing at their legs all fuzzy with pollen as they flew around from bloom to bloom.

We also rocked in our front porch glider. Well, we attempted to rock. That’s because rocking with Aaron in the glider is either smooth and fun or is more often a lesson in frustration.

You see, Aaron has a hard time keeping a joint motion going as we try to rock. I go forward and Aaron is going backward. Or he keeps his feet locked on the ground, stopping the motion altogether. When he does master the idea of rocking simultaneously, he goes too fast and furious.

Smooth gliding with Aaron for any length of time is nearly impossible because he doesn’t cooperate. He’s not trying to be difficult. He just doesn’t have the motor skills to master the art of joint gliding, so we end up with an awkward mess most of the time. It takes time and patience on my part to hang in there with him and make it work, at least part of the time. It’s often best to just stop for a few seconds, and then try again.

In my walk with God, I’m often like Aaron on the glider. I don’t want to be. I don’t mean to be. But oh, sometimes I am so out of sync with God and with who and what I know Him to be. This is true especially in relation to our life with Aaron.

Over the years, God has worked and worked on me to show me that His ways are best, always. Not easy, but best. This path upon which God has set me is of His choosing.

But you know, I get tired. I find myself saying more and more that I’m done…just done. Yet that’s when God, if I get still and listen…like when I read His Word to me and I pray it back to Him…says to me that He understands. He knows tired and He knows being done.

What I need to know is that He is God. I just need to be still…to quit striving…and to know that He is God (Psalm 46:10). Sometimes God just needs us to stop the rocking, rest a spell, and then pick it up again.

And I need to let Him do the leading. It’s a mess when I take over.

I do that by trusting Him, obeying Him, confessing my failures, and looking at Aaron as a gift of God in our lives.

God doesn’t expect perfection from me, but He does expect cooperation if I want to live in peace and joy. Peace doesn’t come by my surroundings being what I want them to be. Peace comes to me despite my surroundings so often being an awkward and frustrating mess.

“Just be still now,” God says. “Quit trying to be the lead as we’re on this glider of life. I’m right here beside you. Let Me lead and you follow.”

“Lead me in Your truth and teach me, For You are the God of my salvation; for You I wait all the day.” (Psalm 25:5)

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