Month: June 2023

Ms. Edna’s Pillow

Aaron and I have a client on our Meals on Wheels route named Edna.  She is such a delight every single week.  And she takes great delight in Aaron, evidenced in her wide-eyed attention to every word he says.

Last week, Edna had a special gift for Aaron.  She leaned down to pick up a small and very pretty pillow.

“Here, Aaron,” she said, “I have something for you.”

She held the pillow for him to see.  Then she proceeded to point to each letter.

“This is an L,” she said as she showed him the first letter.

“This in the middle is an O,” she said, “and next is a V, and right here is an E.”

She stopped and smiled broadly at Aaron.

“It spells LOVE,” she finished.  

She let me snap their picture, giving me permission to share it.

Now, I don’t know about you, but right away I knew that the word on this pillow was not the word LOVE but was instead the word HOME.

I’m not sure if Edna really thought the word was LOVE or not.

I suspect, though, that Edna didn’t know Aaron can read.  I think she wanted him to believe that the word was LOVE because she wanted to show Aaron that she loves him, which is so precious.

I just held my breath, though, hoping that Aaron would not correct her.

I ran to the van to grab my phone and take some pictures.  I came back into the house to find Aaron talking to Ms. Edna about the planet Mercury.  

I figured he had not corrected her spelling error since he was more interested in having a captive…though hard of hearing…audience who would smile and nod at all the planet Mercury data and details. 

I breathed a huge sigh of relief as we drove away.

“Edna is real nice who lives on ______ Street,” Aaron commented.  

I smiled at his phrasing and attention to detail, being sure to include her street name.

And I smiled because he had not corrected Ms. Edna, allowing her to have her joy.

But later, as we returned to the van after another delivery, I held the pillow up.

“Hey, Aaron,” I asked, “what word do you see on this pillow?”

“Home!” he exclaimed without missing a beat.  🙂 🙂

As soon as we got HOME with the LOVE pillow, Aaron showed it to Gary.  Then I asked him if he wanted me to put it in his favorite family room chair.  Aaron was happy with that idea.

So, there it sits now, every day…reminding me each time I see it that really, HOME is LOVE.  

And so is Ms. Edna.

Act Happy, Mom!

Over the years of blogging about our life with Aaron, I have sought to inform and educate others about the complexities of autism.  There are so many parts and pieces to autism…so many ways that Aaron’s life, and therefore ours, is affected by how autism makes him function.

Oh, if you only knew how many times I have thought or even asked this question of Aaron:   “Can’t you just…….?”  

Fill in the blank.

I have even had that question asked of me concerning Aaron.

“Can’t you do something with Aaron?!”

Or this one:  “Have you thought about….?”

Or:  “Have you tried….?”

Now, I do not mind helpful advice or constructive criticism.  However, one must be careful to truly understand a condition before offering advice on handling that condition.

Even Gary and I, with our years of experience, can at times find ourselves floundering amid Aaron’s stubbornness about certain situations.  

Aaron is very wrapped up in his own comfort and routine, sometimes to the detriment of everyone around him.  Anger on his part can set in quickly when his perceived needs are not being met in the way that he wants them to be met.  

It’s narcissism at its finest…or not…but is born out of Aaron’s deep-seated requirements of life, not out of pure selfishness.  Some incidents seem incredibly selfish, though, and there are times to handle that situation.

Such was the case one evening not long ago.  I was preparing a meal for supper when Aaron came into the kitchen and asked what we were having.  The meal wasn’t one of his known favorites.  And he let it be known right away that he was having none of it.

I did not budge when he asked if he could have something else to eat.  I reminded him that I do not run a restaurant and that he could eat what we were eating.  I told him I knew he would like it if he just gave it a try.

He was most unhappy!  

After several trips into the kitchen, where he angrily informed me that he hated that food and would NOT eat it, I knew that nothing I said was going to turn him around.  In fact, any words from my mouth just added fuel to the flame.

This is when I have learned to shut down and no longer respond to anything Aaron says.  I do not talk to him or respond to him.

And he detests that.  It makes him very uncomfortable when Mom doesn’t talk to him, but the silence is the best way I have found to defuse him and to show him that I am done with this scene.

As supper was nearly ready, he began to follow me around, talking a lot and hoping for a response from me.  Finally, he asked a question that needed an answer, so I responded in a very flat voice.  Aaron knows that this voice of Mom’s is still an indication that he has crossed the line. 

“Mom!” he urgently said, “you should answer like you’re happy that I’m telling you!!”

I had to smile at that one and was glad that my back was to him.

But you see, Aaron is clueless about how his treatment of us affects us.  It’s good for him to see the effect in a tangible way, as in my silence and lack of enthusiasm.

He did eat a little dinner with us, and we were able to talk to him some about his attitude.

Then later, Gary and I slipped out to the porch for a little time together.  We both needed a breather.

But we weren’t stealthy enough, for Aaron heard us and soon darted out the door and made himself right at home with us.  There he sat, seemingly oblivious to what had happened earlier, all primed and ready for a long talk with his captive audience.

Of course, he didn’t talk about his earlier behaviors.  He didn’t talk about his feelings, and he most definitely did NOT talk about our feelings.

Aaron wanted to fill our ears with his latest discoveries from reading his book on UFOs.  He wanted to talk and talk and talk about Area 51, asking tons of questions and waiting for our answers.  

Ah, Aaron…slipping into his comfort zone and unaware of the fact that this is not our comfort zone at all.  

Such is the give and take of living with autism.  My silence had pushed Aaron out of his comfortable place.  Now his talk of aliens and UFOs and Area 51 showed us that Aaron was ready to get back to normal…his normal, that is.

And yet his normal has in a strange way become our normal, too.  We know that Aaron is happy again when his conversation turns in these strange ways.

I guess Gary and I have become a little strange ourselves sometimes.  

And strangely enough, we didn’t have to act happy.  

We truly were just as happy as little aliens in a UFO!

Complaining in the Rain

It’s been terribly dry here in Kansas for way too long.  The wells out in our “used-to-be-country” neighborhood are running very low.  Some have dried up.  Some of the ponds used for cattle are just puddles now.  And the wheat crop is predicted to be the poorest in 60 years.

Therefore, I was happy to hear a low rumble of thunder early this morning.  As I sat on our patio and finished my quiet time, the sky began to darken.  I was very thankful for the rain that began to fall.  It was a gift from God!

Aaron was out of bed not long after and he sat with me to enjoy the rain as well.  Soon we were both ready to head out the door for our Meals on Wheels delivery.  The once gentle rain was now a downpour.

“Well,” I told Aaron, “we really need this rain so I’m not going to complain about it.”

We picked up our meals, loading them into the van as the rain came down and our clothes began to get wet.  At our first house, I opened the side van door and bagged the food.  Rain was a cold presence on the back of my shirt as I tried to lean in the van.  Aaron had already run to the client’s door, so I juggled the bag of food and my large umbrella, getting even wetter.

We chatted a minute with our friend, Aaron crunched in the corner of the small porch under a tiny awning and me under the umbrella.  Rain washed over us again as we got in the van, feet now soaked from the standing water.

As we backed out of the driveway, I happily made a little rhyme.

“Oh, the rain is a pain but I’m not going to complain!” I sang to Aaron.

Amazingly, he tolerated my silliness and off we went to the next house.  More rain, this time with some mud from the unpaved road as well as huge drops of water landing on us under the very low hanging branches at her uncovered door…branches that caught my umbrella and made it useless.

“This is great!” I exclaimed as we handed her the food.  “We do need the rain!  See you next week!”

By the fifth house, the rain was coming down even harder.  We ran up the wheelchair ramp, where our client was already at her door.  She was taking the dog bones that Aaron handed her for her two dogs.  I handed her the rather soggy bag of food and asked her how she was doing.

“I’m doing just fine,” she said, her face glowing with peace as she sat there in her wheelchair.  

She looked then at Aaron.

“Thank you so much for the dog bones,” she told him.  “My dogs love you for that.”

Aaron beamed.  Then she handed him one of the bones so that he could give it to her rambunctious dog himself.   She smiled as much as Aaron as he so excitedly watched the dog eat his bone.  

“Thank you and God bless you,” she said as we turned to leave.  I noticed how pretty she looked…how content despite her situation.  

At the next house we got to see our friend who had a serious fall a couple months ago.  She has been in the hospital and in rehab, and today was the first time we have been able to see her since her accident.  

Her smile was huge as she greeted us.  I wanted to talk about how she is doing but she wanted to focus on Aaron, hearing all about his recent seizure fall.  I finally managed to ask about how she’s doing, and she too said that she was getting along fine as she downplayed all that she has been through.  She is a sweet believer, and her joy is evident.

My joy was getting harder to muster as we went once more out into the rain.

“Whew!” I said, “I’m getting tired of this rain.”

“But I’m glad we’re getting the rain,” I quickly added as I remembered my earlier determination to be thankful.

My heart felt that little pinch of the Holy Spirit reminding me of just how much this morning is a picture of my life.

Oh, it’s easy to be all spiritual and thankful while I’m sitting on the patio, protected from the rains of life.  I can be an observer and have all the answers with all the right verses and attitudes as long as I’m not actually getting wet.

But let me step out into the storm and see what happens.  Getting wet and cold and muddy can quickly begin to take a toll on my patio attitude.  Soon I’m not so thankful for the rain that I had earlier said I needed.

The splashing of life’s trials has a way of diminishing my once-strong faith.

I feel cold.  Tired. 

And the path can make my feet muddy.  

Misery sets in, no matter how much I said I needed this weather sent from God.

No matter how much I quote Romans 8:28.

And while I may not be actively shaking my fist at God, I find that the flame of faith and joy in my heart is flickering in the rain.

It’s difficult to stay strong and positive in the downpours, especially prolonged storms that have no foreseen solution or resolve.

Honestly, I have been struggling some with Aaron issues over the past few months. Feeling discouraged more than I should.

“Lord!  I know I said that I need whatever you send, and that I can trust you.  But I’m getting tired and wet and muddy and uncomfortable!”

Yet the Lord, in His patience, used my experience this morning to prod my heart.  

And He used the most surprising people to touch my soggy spirit…people who have every reason to be extremely tired of the rains in their lives.

“Rejoice in the Lord always; again I will say, rejoice! 

 Let your gentle spirit be known to all men.  The Lord is near.  

Be anxious for nothing, but in everything by prayer and supplication WITH THANKSGIVING let your requests be made known to God.

And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.”

Philippians 4:4-7