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.

 

Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms.  While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided.  A big reason I think this is because I know me.  I know me better than anyone else knows me, except God.  I know that I’m no more special than any other mom out there.  This isn’t fake humility, either.  It’s just the truth.

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all that I need.  He has all that any mom needs.  I asked God many times to give me grace for the challenges that I faced as a mom of all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs.  My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

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So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

  • Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
  • Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
  • Who dread with a passion those IEP meetings.
  • Who dread having to once again explain your child in every new setting.
  • Who dread high school graduation because……then what?
  • Who try to ignore the stares from others in public places instead of basking in admiring glances.
  • Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
  • Who are searching for the best wheelchair rather than the best bicycle.
  • Who watch their child being marked for radiation rather than getting a cool tattoo.
  • Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
  • Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
  • Who hurt because their child doesn’t have many, or any, friends.
  • Who are signing guardianship papers instead of college admittance papers.
  • Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
  • Who know more drug names and side effects than they ever wanted to know.
  • Who spend far more time finding caregivers than finding cool vacation spots.
  • Who are adept at rearranging schedules due to unexpected medical issues.
  • Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
  • Who read your adult child the same book every single night of his life.
  • Who keep waterproof mattress pads on your child’s bed – your adult child.
  • Who have a hard time finishing a conversation with your husband without being interrupted over and over.
  • And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

 

So to all of you amazing mothers of special needs children, I give you a huge high five!!  I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

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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.

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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.

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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.

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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.

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Talking Points #5

Here are more of Aaron’s comments that I have collected over the years.  Enjoy!

 

Aaron was very excited today about eating at Long John Silvers. He loves the fish and the “bread balls” (aka hush puppies).

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Aaron was telling me what he  read in his weather book last night. His take: “The book said it got so cold once that it ruined the whole beer crop!!” Oh, my goodness!!! And I couldn’t even belly laugh.

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I wanted to show the plate that Aaron recently made me. He brought this home a couple weeks ago, as pleased as he could be…..even though he says he doesn’t like art. Look at how he ran out of room to put the last “m’ in “mom,” so it’s at the top. HaHa! I LOVE this! I put it on a stand and have it displayed with great pride on our kitchen server. ♥

 

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Aaron didn’t make his bed this morning. When I dropped him off at his group, he got out of the van and then said, “Oh Mom, can you help me make my bed today while I’m gone?” Help him while he’s gone? Clever, Aaron! I think you just asked me to make your bed FOR you, period.

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Sitting at lunch yesterday, there were two guys in the booth behind us. Aaron, who doesn’t know how to whisper, said – “I can hear what they’re talking about!” Reminded me of the time when we had a guest preacher at church and Aaron “whispered” – “Would someone tell that man to be quiet?!” How red can my face get before I actually have a stroke?!

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The True Story:

Aaron was talking to us on Saturday about how someday he will need to leave our house and live somewhere else. He doesn’t like that conversation. I used Andrea as an example of leaving home, moving to Texas, and living in an apartment until she and Kyle got married. We told him that she was very happy to be on her own when the time came for her to leave. He talked to Andrea on the phone about it later and she repeated what we had said.

Aaron’s Version (told to our neighbor, Amanda):

Mom and Dad were talking to me about how they’re going to kick me out of the house. Andrea moved out of the house when she went to Texas, and she was happy until she married Kyle!

Aaron needs me to be his full-time interpreter and supervisor of damage control!! 😆😆😆

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Aaron: Mom, I ate a marshmallow, raw! I noticed it didn’t have much taste. 😁😋

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Aaron heard Alan Jackson singing “Gone Country” and asked, “Is he saying gone country or gone coo-coo?”

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Aaron and I took Jackson for a walk on this beautiful day. Aaron: “I wonder if Dad will be home later.” Me: “Well Aaron, Dad always comes home.” Aaron: “But I meant a different kind of later.” The scary thing is that I understood exactly what he meant!! HaHa!

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Aaron called me today and told me that he was going to Quik Trip with one of his staff. He had money burning a hole in his pocket, so he asked me what he could buy with it. First of all, I told him no candy. Then I mentioned a salad or fruit. He countered with the idea of corn dogs. I gave in but said to buy no more than three. When I picked him up, he told me that he did get three corn dogs, and a large water. Later, he saw me fixing supper.

Aaron: Mom, what’s for supper?

Me: Egg casserole and salad. Are you eating?

Aaron: Yes! Three corn dogs didn’t stuff me up!

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Aaron has talked and talked and talked some more about the staples in his head. Trust me. Today, on the way home from WalMart:

“Mom!! When they put those staples in, I could feel the hurtness!!”

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Aaron was excitedly telling me about his trip to the pet store with his day group.  “Mom!!!  We saw a parrot and the parrot talked!!”  So, we talked about how the parrot talked.  Then Aaron told me that I need a parrot at home, and I asked why on earth he thought I needed a parrot at home.  “Because you would have someone to talk to you while I’m gone!!” he answered.   ARE YOU KIDDING ME????!!!!  😊  😊

 

Enjoy your day, dear readers.  I WILL be back, trust me, with more of Aaron’s sayings.

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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Aaron, Autism, and Coronavirus

Surely y’all knew I was going to do this, right?  That I was going to talk about Aaron and Coronavirus.

Does anything…except normal social cues…escape Aaron’s attention?!

Of course, talk of this new virus is everywhere.  We can’t turn on the television for three minutes without someone talking about Coronavirus.

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Let me try to explain how Aaron thinks.  To do so, I’ll go back a little way to the time I took care of our elderly neighbor, Nora.  I helped her for five years, during the time of her husband’s cancer, his death, and her move to assisted living.

Aaron struggled with Nora.  Honestly, he just didn’t like her.  It had nothing to do with whether Nora was likable or not.  So why didn’t Aaron like Nora?  Let me list the ways:

  1. Nora talked in a high-pitched voice that bothered Aaron.
  2. Nora talked too much.
  3. Nora didn’t hear well.
  4. Nora didn’t always respond to Aaron’s comments appropriately, or at all.
  5. Nora became a topic of conversation here at home as I cared for her, so I talked too much about her.
  6. Nora took too much of my time.

I listed the highlights.  I could have listed more but you get the point.  And the point, to all of us, is that Aaron sure did seem selfish and unkind to not like Nora for the reasons listed above.

But you see, to Aaron and to many others with autism, their world and its order is all important.  If a person or an event disturbs their world, woe be to that person or to that event.  And woe to the persons living within range of the anger that will no doubt ensue due to said person or event.

Now we come to today’s current events.  Let me preface this by saying that for some reason unknown to Gary and to me, Aaron has decided that he doesn’t like President Trump.  I don’t want this to turn into a political statement, but Aaron hasn’t heard that sentiment from Gary or from me.  Aaron has decided this on his own, and for reasons he can’t adequately explain to us.  We can only guess that Aaron doesn’t like Trump’s voice and his demeanor.  So there.

Then along came Coronavirus.  Aaron is sick of it, as Nora would have said.  I won’t tell Aaron that Nora would have said that.

But why on earth is Aaron sick of Coronavirus, of all things?!  Let me list the ways:

  1. Trump talks too much about Coronavirus.
  2. Trump talks too much, period, according to Aaron…so if he talks about Coronavirus then Coronavirus is irritating!
  3. Mom and Dad talk too much about Coronavirus.
  4. Mom and Dad need to talk more about Aaron.
  5. Coronavirus has made Wal-Mart very crowded.
  6. Because Wal-Mart is very crowded, Mom doesn’t want to go shopping there.
  7. Since we didn’t go to Wal-Mart, Mom took me to Sam’s.
  8. Sam’s doesn’t have all the things I wanted, and Sam’s was also crowded.
  9. Sam’s is dumb.
  10. This is the fault of Coronavirus.
  11. Coronavirus is dumb.

That’s it in a nutshell.  Coronavirus has become Enemy #1 in more ways than one at our house.

This could be a very very very very long huddling-down-at-home experience.

Although…Aaron does LOVE to stay at home.  If I do decide to keep him at home…and I probably will…and I tell him it’s because of Coronavirus…

We just might have found the cure!

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Talking Points #2

Aaron is hovering, in count-down mode until he and I watch a DVD tonight. Every couple minutes he wanted to know what I was doing now, and what I was doing next. AAAHHHH!!!!

Finally, I said, “Aaron, you go do your thing and I’ll go do my thing, and then we’ll watch a DVD.”

Aaron: “What kind of my thing are you going to do?”

He doesn’t deter easily. 😛🙃

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One of Aaron’s staff is pregnant. Just now Aaron said, “You know what I don’t do anymore? I don’t call Misty ‘Miss Fatso’ anymore.” Oh my word!

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I fixed stir fry for supper. Aaron was chasing a green pepper around his plate with his spoon and finally said, “This pepper keeps slithering away!” Yep, I fix some very interesting stir fry! Dare to try some?

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Aaron told us that he saw a big Great Dane in a pet store the other day. We asked him what the dog looked like and he said, “He was black with white spots and they were NOT dandruff!” That is SO good to know!

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Aaron knows that often on Saturdays I just wing it for supper. And sometimes we have his dream supper – PIZZA! So every Sat. morning he begins the questioning and it lasts all day – “What’s for supper, Mom?” But just now, with no satisfactory answer, he changed his tactic – “Mom, do you wonder what’s for supper?” Yes, I do, Aaron! I wish someone would tell me!

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Aaron was talking about the hot and cold air masses that collide and cause tornadoes. Here’s how he explains it: “Spring and summer get all mixed together!” Couldn’t have said it better myself!

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Aaron and I scooted down to Dillon’s on this snow day. I got some Chinese food, including some Crab Rangoon. Aaron was excitedly telling Gary about it because there are some for him to eat – if he will.

“DAD!!! Mom got Chinese food at Dillon’s and she got some CRAB LAGOON!! Have you ever had CRAB LAGOON?!!”

I do think we’ll pass, Aaron. 🤢🤮😁😁

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Aaron this morning, standing outside my bathroom door:

“Mom! This will make you laugh! Even though I went to bed at 9:02, I woke up at 11:39 and thought it was time to get up!!”

I’m laughing, yes, but not for the reason Aaron thinks. 😂😂

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A massage therapist comes to Aaron’s day group every Wednesday to give the clients a massage. Aaron, who notices everything, was telling us this past Wednesday about the music that she plays while giving the massage. Nature music, you know….calming and soothing music.

Aaron: It sounds like music that goes outside!!

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As part of Aaron’s Friday special goody bag, I got him a small bag of cheesy popcorn. I wasn’t sure if he liked it, but I am sure that I do. He has ignored it, so I decided that I could no longer resist. I quietly opened it while telling myself that I will buy him a new one tomorrow. The only problem is that he walked in the family room and saw me eating from his bag of cheesy popcorn. I was caught red handed, and feeling like a kid when Dad would find the stash of candy under Jan’s and my pillows at night. Aaron stopped dead in his tracks when he saw me on the couch eating his cheesy popcorn that he had totally ignored for two days.

Aaron: MOM!!! That’s MY popcorn!!

Me: (Feeling like a terrible mom and a lousy thief) I’m sorry, Aaron. I’ll buy you a new bag tomorrow.

Aaron just stared at me.

I stared back, feeling like the tables had turned from what they usually are. I was the guilty one. I was squirming.

Finally…..

Aaron: You are a very foolish woman!

And he walked away while I didn’t know whether to laugh or to crawl under the couch.

I have been duly reprimanded by my autistic son!

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Last night, Aaron was planning our lunch location for today, before his dentist appointment.

“Mom!! Can we eat at Border On The Grill??” 😅😍😋

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“Mom, this has vegetation stuff in it!”

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Aaron knows that when he sets the table, I always tell him to wash his hands. So this evening, after eating a few M&M’s, he offered to set the table for supper.

“Mom, can I set the table? And my hands are clean because I washed the M&M grease off!”

😁😝🤔

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Aaron: MOM!! Fruit Roll-Ups look like carpet!! 😆😆

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Aaron saw a McDonalds commercial and asked, “Mom, what’s the AGNES steak burger at McDonalds?” Not sure I want to try it and find out now.

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At 4:48 p.m. –

Me: Aaron, would you like some Mac and Cheese for supper?

Aaron: Yeah!!

Me: O.K., I’ll fix you some.

Aaron: But not now. It’s not 5:00.

(Supper is at 5:00, people!!)

Me: But I can start it now.

Aaron: Then it’ll be 5:00 when it’s ready?

Me: Yes, it will be 5:00.

So Aaron’s world was set straight, and supper is not going to be BEFORE 5:00!!!!

The End. (But not really). 🤣😜😋❤️

 

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Number 10 Song

I was already fairly saturated with Aaron issues when he and I walked out to the van this morning.

Him standing outside my bedroom door earlier, wanting me to come look at his bed – and me knowing what I would find.

“Aaron, is your bed wet?” I asked.

“Yes,” he answered.  “And my pajamas.  Come look!”

My day was already taking a track I did not plan.

Him saying he didn’t want to go to his day group today because of the Valentine party.  No surprise there since he doesn’t like parties, of all things.  Too noisy, says the loudest person I know.

Him wanting to take his wallet if he did go to Paradigm, even though he didn’t need money on a pizza day.  I know his plan.  Give money away if he can get by with it.

Him wanting to take snacks even though food was to be provided today.  Again, his plan is to give food away even when he’s not supposed to do that.

There I was, redirecting and being level and not reacting and listening to him tell me that everything was my fault – including any possible seizures he said might happen today.  I didn’t hear a seizure last night and he doesn’t act like he had a seizure, but he was laying claim to that possibility in an effort to stay home.

He finally came around and compliantly went to the van with me, where he immediately wondered where his CD of choice was.  I had removed it earlier this morning along with a stack of others.  Varying choices I offered were not acceptable as we sat there in the driveway.

Finally, I saw one!  The Oak Ridge Boys Ultimate Collection!  He had wondered only yesterday if we had any other Oak Ridge Boys CDs.  We had just finished listening to the two that I remembered having, so this other one I saw laying there was a real find!

Or so I thought.  Aaron was not impressed.

He mumbled something about the other Oak Ridge Boys CDs…and I knew what was going on here.  He really wanted to listen to this third CD but not without completing his order of listening.  I knew that there was no other choice but to go back in the house to get the two CDs that were in that stack I had earlier removed.

“Seriously?!” I thought as I headed in the house.  “Why are you so…so…RIGID??!!”

I climbed back in the van, carrying the hopeful source of Aaron’s contentment.  Then I learned that Aaron didn’t want to listen to both of the CDs again.  He wanted…NEEDED…to complete the one that we had not finished yesterday.  This must be done before he could begin the new CD.

“We were on number 10,” he flatly said as he pushed the CD in the slot and pressed the button until number 10 was on the screen.

Aaron visibly relaxed as number 10 song began to play.  He was still and quiet, his hood pulled over his head and his gloved fingers entwined together.

 

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I say this often, but Aaron’s world was made right in that moment.  He seriously must finish the prior CD by the same artist before he can begin the new CD.  I do not feel that angst that Aaron feels, but I will certainly feel his angst if I do not cooperate with his very ordered view of his world.

I can’t be selfish, tired and frustrated as I may be at that moment.  Selfishness will only increase Aaron’s frustration and will lead to more conflict which will not in any way help our situation.

Aaron needs understanding.  That’s all.

Oh, and a dose of love.

He doesn’t want hugs and kisses, gooey words and all that sort of stuff.

He wanted me to get the CD, and to not make him feel dumb for needing it.  This is Aaron’s love language.

As we drove away, finally, the number 10 song was playing.  It’s a pretty song, and suddenly my heart was very touched as I listened to these words:

“You’re always in my heart, and you’re often on my mind.”

My love for Aaron was being sung in that number 10 song.  The tears trickled from my eyes, but I couldn’t let Aaron see me cry.  My tears make Aaron very uncomfortable.

“I like that song,” I said as it ended.

“Do you want to play it again?!” he asked with excitement.

“Sure!” I happily answered.

My affirmation, on every level, was just what Aaron needed.  But so did I.

Aaron is often on my mind for less than pleasant reasons.  Worries.  Frustrations.  Anger.  Dilemmas.  Prayers.

But Aaron is often on my mind for happy reasons as well.  Joy.  Humor.  Uniqueness.  Thankfulness.

He is always in my heart, for all the above reasons.

He needed more than Skittles and a goofy love card this morning.

 

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He mostly needed…and needs EVERY day…to know that despite my weariness and my worries, I get him.

Because I get him, I got his CD.

I liked the number 10 song.

That’s the BEST heart gift for Aaron…and for ME!!

 

 

 

 

The Good-Smelling Difference

Aaron was awake and out of bed very early Monday morning, especially considering the fact that he took a long time getting to sleep the night before.  We were late to bed on Super Bowl Sunday, and not just because of the game.  He and I watched a Dr. Quinn after the Super Bowl…a SUPER Super Bowl for us, by the way.  Aaron would tell you that the team we voted for WON!!  YAY!!

Aaron enjoyed watching the game with us.  He didn’t have many new insights, except for thinking that he heard something upstairs on fire.  What??  He was sure of it.

“I hear a snappeling sound!” he insisted.

Gary and I assured him that there was no fire upstairs, but finally he had to prove it to himself, so up the stairs he stomped – he does sound like a bull elephant! – and came back with the report that there was no fire upstairs.

“There’s the snappeling sound again!” he soon insisted once more.

Still no fire.

We eventually realized that the “snappeling” sound he heard was the sound of the player’s shoulder pads hitting together.  Who notices that sound?

Aaron does.  And isn’t that word just the perfect word for a crackling fire?

He didn’t eat much of the food I fixed.  He did try to convince me when I told him that he could have two Rice Krispie Treats that this was, indeed, only TWO!  😊

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On this Monday after Super Bowl, Aaron had an autism doctor appointment.  Aaron would tell you that we were eating lunch at Old Chicago as the main event, with the doctor visit as an annoying side trip.

He was chipper and happy, eating some breakfast I fixed him, but by the time we left the house later he had greatly changed.  I think he had a small seizure that I didn’t totally catch, only seeing the end of it.  Therefore, on the way to the doctor he was very tired, keeping his eyes closed most of the way.

The doctor does a good job with Aaron, trying to get him to communicate with her, but he was still draggy and tired…and his answers often very inaccurate.  She and I end up, as we did yesterday, talking about my Aaron concerns.

And my concerns seem to grow.  Weight loss…behaviors…seizures…a hard time on many nights going to sleep.

Adding a medicine…the concerns with that…

Just on and on.  And so many issues are unknown, even to doctors, when it comes to the brain and to the impact of long-term seizures and meds.

Now I was feeling dreary and burdened as we drove away, Aaron’s eyes closed again.  Even inside Old Chicago, as Aaron managed to eat two pieces of pizza, his mood wasn’t his usual over-excited self.

But on the drive home, Aaron and I had fun watching the temperature drop number by number as a cold front blew through.  He thought it was great fun!  It was also great fun to anticipate getting a haircut, which he loves.  I had signed in on-line and he was happy – but still very tired.

We ran home for a quick stop and to grab our jackets.  Then I told Aaron that I was sure a few Reese’s Cups would perk him up.

“Yeah!!” he agreed.

He carefully took three small ones, put them in his coat pocket, and off we went.

I never know when we go to Great Clips just how the visit will be.  As we walked in the door, I was just happy that Aaron didn’t barge in and loudly say,
“I’M HERE FOR A HAIR-CUT!!!” – as he so often has in the past.

However, yesterday I realized that we didn’t know any of the stylists.  I could feel discomfort invading my happiness.  I just never know if someone will understand Aaron or stare at him in that all-too-familiar way that makes me half angry and half sad.  I was hoping for someone who knew Aaron and was good with him.  Instead, we were given the perfunctory greeting as we entered, mixed with inquisitive stares.

UGH!!!

Aaron and I sat in our chairs, him totally unaware of my concern.  He wanted to know what Bed Head meant as he examined the products on the shelf, his voice still a little slurred.  Finally, he sat down and carefully pulled his Reese’s Cups out of his pocket.

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Two were placed neatly on the chair beside him, and the third he slowly unwrapped.  He ate it, and then repeated the action two more times.

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By then, the stylist walked our way and called his name…and I, with huge relief, saw that Aaron was in very good hands.

I knew he was in good hands because of the stylist’s big smile and her comfortable conversation with Aaron.  There was none of the awkward staring or obvious discomfort that we sometimes encounter when we are out.

Aaron sat in the wrong chair, one he has often used, but she handled it so easily.  Soon Aaron was sitting in the correct chair as the stylist asked him if he watched the Super Bowl.  Perfect question!

“Yeah!!” Aaron answered.  “Who did you vote for?!”

“I wanted the Chiefs to win,” she answered.  “Did you?”

“Yes!!” replied Aaron, rubbing his hands together in delight.

They talked about Super Bowl snacks as she cut Aaron’s hair and trimmed his facial hair, and soon she was done.

“Aaron, would you like some good smelling stuff in your hair?” she asked.

“I need to ask Mom,” he said as he looked my direction.

“MOM??” he yelled.  “Can she put some good smelling stuff in my hair?”

I laughed and said yes, of course, knowing how very happy Aaron would be with this turn of events.  He doesn’t have enough hair for good smelling stuff, but that’s not at all important.

Smiling, good smelling Aaron left there a very different person than when we walked in.  I did as well, I assure you.

And once again it hit me just how big a difference one person can make in another person’s day….specifically, in Aaron’s day…and thus, in mine.

Later that evening, Aaron was waiting on me to finish some things in my bedroom.  He was hovering, as he so often does.

“Mom!!”  he suddenly exclaimed.  “Do you want to smell my hair?!”

Normally, that would be a no.  A big no.  But not today, thanks to our difference-making hair stylist.

“Sure I do,” I answered.

Aaron chuckled in joy as I took a sniff.  He was rubbing his hands together, a sign of his total happiness.

Who would imagine that such a simple thing as good smelling hair stuff would bring such happiness to Aaron and to me?

His hair still smelled good, but more importantly, his heart was light and happy.  The residual nice scent was like the residual warmth in our hearts, both of us.

Never underestimate the difference you can make in someone’s life, especially in the lives of our special ones.  It isn’t necessary to spend money or to take tons of time.

A smile…a word…the warmth of understanding…are all such sweet gifts to each of us, parents and children alike.

That good smell lingers for such a long time!

Longer than the good smelling stuff in Aaron’s hair, trust me!   😊

 

 

She Took It All

One of Aaron’s favorite things to eat is a Cheddar Pasta Salad from the deli at Dillon’s.  The name has actually changed to Cheese Pasta Salad, but to Aaron and to me it’s still Cheddar Pasta Salad.  Aaron always gets a large size, watching carefully to see that the container is filled to the brim.  We go so often that we’ve gotten to know some of the deli workers, who can always guess what we want when we walk up to the counter.

Yesterday afternoon Aaron asked me if he could have a Cheddar Pasta Salad, so off we went to run an errand before the Chiefs – Titans football game, and then end at the Dillon’s deli.  Things were going smoothly, and I was happy that we would make it home in time for the game.

It doesn’t ever seem to matter how carefully I plan our entrance into Dillon’s.  Aaron always seems to somehow get ahead of me as we make our way to the deli counter.  He is definitely on a mission!

The problem is that he will often push in front of people if there are others standing at the counter.  Therefore, he and I are in a foot race as I try to head him off at the draw, before he offends the others who were there before us.  Aaron doesn’t care one bit about waiting his turn when it comes to his Cheddar Pasta Salad.  He doesn’t notice if people are staring or are angry, if they sigh or if they edge closer to the counter.  He only has eyes for the food behind the counter window, looking quickly to see if there is any Cheddar Pasta Salad.

Yesterday there was a mom there with her very cute little girl who was maybe four years old.  I made it to the counter just a few steps behind fast Aaron, just in time to touch his arm and remind him that someone was before us in line.

Aaron was very happy to see that there was some Cheddar Pasta Salad in the tray.  “Look, Mom,” he said.  “They have Cheddar Pasta Salad!”

“That’s what we’re getting, too!” said the friendly mom.  “It’s her favorite!” she added as she looked down at her smiling little daughter.

In an instant, I knew that we were in a dilemma.

In an instant, Aaron had figured out that there was NOT enough Cheddar Pasta Salad for both him and the little girl.

And in that instant, Aaron’s face fell.

“Oh boy,” I thought to myself.

The mother was telling me that her little girl just loved the pasta…that she never ate the broccoli…that the mom ate the broccoli…

“There won’t be enough for me!!” Aaron blurted out.

“Yes, Aaron, there will be some for you,” I assured him, while I felt dread creeping up my spine.  How far would Aaron go in his disappointment?  Would he become angry?

The mother also told Aaron that they weren’t taking all the salad, but Aaron could see that there would not be enough for his large container.

He stared down toward the floor, not making eye contact, as he tried to process the fact that these interlopers were taking HIS Cheddar Pasta Salad!

Their transaction done, the mother told us to have a good day and told Aaron to enjoy his salad.

“Shut up,” Aaron softly replied as he continued looking down at the ground.

I was horrified!!!!

The mother and cute daughter were walking away as I sternly told Aaron to say thank you to them.

He refused.

I told him through firm lips that he would NOT get his salad if he didn’t say thank you.

The girl behind the counter, new to us, was waiting on my order.  I fumbled out that we would take the rest of the Cheddar Pasta Salad.

“She took it all,” Aaron flatly said.

My face was flaming.

The mother and little girl were a short distance from us.  The container…the medium size and not the large…was being filled with the last of the Cheddar Pasta Salad.

“THANKS!!!” Aaron suddenly bellowed.

And the mother turned and smiled at us.  I wondered if she could see the distress on my face, and on Aaron’s as he processed taking home a medium container.

Not a LARGE!!

Then the mom and her daughter turned and walked right behind us.  I touched her arm and whispered to her.

“I don’t know if you heard what he said, but I’m so sorry,” I told her.

She said she didn’t hear anything.  I softly told her that Aaron has autism, but I could tell she knew.

“Don’t even worry,” she kindly said.  “My older daughter works at Open Doors with autism all the time, so I totally understand.”

Relief washed over me…partly because they hadn’t heard Aaron’s comment and largely because she was so kind.

I thanked her, turned back to Aaron…who was staring dejectedly at his medium container…and then she said to me:

“You’re a very good woman.”

I was so surprised!  I thanked her.

And I blinked back tears and swallowed the growing lump in my throat.

I was so happy that now Aaron was holding a jar of Chili Fig Spread, excited about his new find, moving on to the next thing as he always does.

He is so oblivious to other’s emotions.  So clueless as to the stress he inadvertently creates.

SO unaware of how embarrassing and wrong it is to tell someone to shut up!

But he did just that.

And he will do it again.

So, we give the lectures and we live the example, but none of that can permanently re-wire his brain.

I picked myself up off the floor, figuratively speaking, as I gathered my wits about me and picked up the pieces of my shattered motherly pride.

Yes, my son is the one who told you to shut up.

But this is our life with Aaron.

Aaron, who wants life to fall into place his way and when it doesn’t, is hardly able to do anything but to tell the offender to shut up.

But he DID say thanks!!  I’m so thankful for that!!

I DID give him his Cheddar Pasta Salad.  Look at his sad face, though.

 

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His medium…not large…Cheddar Pasta Salad.

“She took it all,” he said over and over as we walked through Dillon’s.

“She did NOT take it all!” I reminded him over and over.

We actually got a lot in return at that deli counter.

A large serving of kindness goes a long way!