Category: Autism Spectrum

My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening.  I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures.  I would rather have heard a seizure, honestly. 

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels.  I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook.  I love sharing the very unique and humorous ways that Aaron speaks.  His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word. 

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00.  He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set.  But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer.  When Aaron plays a game like this, he has a very hard time stopping it and saving it.  He must reach a certain point in the game, and in his mind, before he will turn it off.  For over an hour he kept repeating the same phrase, loudly: “I’m coming!!”  Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time.  We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out. 

“Can we watch Bones, Mom?!!  Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that.  He was in such a tizzy.  And he could tell that I was tired and didn’t want to stay up late.  His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility. 

Mom was mean.  Mom was dumb.  Mom didn’t care.  On and on.

He turned his DVD on.  Turned it off.  More yelling.  Turned it on.  Turned it off.  Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry.  I wasn’t crying, but he didn’t believe me, so he stared and stared at me.  And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much.  He looked so funny, really, that in my tiredness I did the forbidden…I laughed.  Aaron thought I was laughing AT him personally.  He erupted and we traveled even further downhill than we already were.

It was a wild hour after that.  He was in and out of his bedroom…in and out of bed…in and out of our bedroom.  He was calmer talking to Gary…angry talking to me.   Say goodnight, Mom…no, don’t say goodnight, Mom.  I don’t want your goodnight kiss…OK, I do want your kiss. 

He calmed when Gary came upstairs.  He let me hug and kiss him goodnight.  And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated. 

My calmness during the whole episode only seemed to fuel his flames.  The realistic, upset words I did say seemed to appeal to him more than soft kindness.  So strange how that works.  So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors.  Seizures are scary and sad.  Behaviors are exhausting and often hurtful.  People feel sorry for seizures.  But behaviors…what do you do with behaviors? 

And behaviors leave me feeling like a very unfit special needs mother.  I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me.  Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort.  But my tension was strong, too, and sleep wouldn’t come.  My tossing and turning was keeping Gary awake, too, I knew.  I would relax and then thoughts would wash over me.  I would relax again and Aaron would stir, seeming to be restless as well. 

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately.  How could I have handled it differently?  What should I have said?  What should I have NOT said?  Guilt for not liking Aaron when he’s out of control.  On and on.

What I do know is that God is always there for me.  He heard me last night, there in the dark, praying and confessing and praising.  He knows my form.  He knows that I am human and that I am weak and that I need Him, totally.  He knows that I get frustrated and tired, and that I do love Aaron with all my heart.  And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy.  Some days…and happenings…make it harder than others. 

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace. 

That’s the kind of parent I need to be with Aaron.  Forgiving him…understanding but not condoning…and opening my heart and my arms with love. 

I have no superior wisdom or strength.  I mess up…I give up…I look up.  And there I find God, always understanding and giving me grace. 

God’s a good Father to me, his special needs daughter.  I need all He gives to me and does for me, for I have nothing of my own.  He certainly didn’t choose me for this parenting role because of anything I have to bring to the table.  He chose me because…well, I don’t really know.  But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest.  Which is often.

God loves me, His special needs daughter. 

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care. 

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Aaron and The Wedding

 

Two weeks ago we had…a WEDDING!!!  Our first wedding!!!

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Our daughter, Andrea, was wed to Kyle Kester in a perfectly beautiful outdoor ceremony at the Texas home of Kyle’s grandparents.  It had rained a lot there, even the morning of the wedding; but God told all the weather forecasters that He was sorry to spoil their forecast…that He had lots of people praying for no rain, so no rain it was. 

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It was a small wedding, the way Andrea and Kyle wanted it, and was full of close friends and family who helped with everything and shared in our joy.  Even my brother, John, married them…and his wife, Jeanie, was the coordinator. 

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Family.  When all is said and done, is there anything or anyone more precious to us than family?  And especially at an event as special as a wedding, family is there.  The pictures are taken, the hugs shared, the laughter abounding.  Family love is everywhere during a wedding.

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Yet when all the wedding photographs are finally ours to see and enjoy, we will look at our family wedding picture and have one missing member. 

Aaron.

Aaron could have been there…and yet he couldn’t.  Let me go back in time and explain.

Kyle, from the first time he walked into our house nearly three years ago, was a natural with Aaron.  We love that about Kyle.  He is patient…treats Aaron as an equal…knows how to talk to Aaron…and knows when to redirect Aaron more than most people do at this stage in their relationship. 

Aaron has a very close relationship with Andrea.  Aaron is the older by 18 months, but he still sees Andrea in somewhat of a mother role in his life.  He loves to talk to her on the phone, almost always about himself, but still he wants to tell her everything about his current movie or game or activity. 

But two things happened when Kyle came into this perfect picture.  The first thing is that, to Aaron, Kyle was taking Andrea away from him. 

“I still want Andrea to be my sister!” Aaron exclaimed when he realized that Kyle just might be here to stay.  We explained and explained, over and over, that nothing would change…that Andrea would still be his sister, forever…and that she would still come to visit, and we could go visit her.  And that if they got married, he would gain a wonderful brother!

The second thing that happened to Aaron was the process of figuring out just who Kyle would be in our family, and particularly who Kyle would be to him…to Aaron.  Aaron struggles with just who is who in family relationships.  He may meet a couple and later say that the man is the woman’s dad, not her husband.  Uncles, aunts, and cousins are completely impossible for him to understand.  And brother-in-law?  Forget it!!

Aaron wants to forget in more ways than one! 

“I don’t NEED a grand-brother!!!” he blurted out one day as he expressed disapproval over the upcoming marriage. 

We didn’t even tell him that a “grand-brother” isn’t a thing. 

Many of Aaron’s thoughts about all this marriage business, and the dynamic driving his thoughts, will hopefully be the stuff of another blog one day.  Back to our decision now about Aaron and him coming to the wedding…

Andrea called late one Saturday night last December with the very happy news that this had happened:

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 Kyle and Andrea’s engagement was not unexpected at all, but the reality of it was cause for so much joy.  We were happy, happy, happy!! 

Yet with Aaron, we were slow to tell him the great news.  We knew that he would not be happy, happy, happy.  The next day, on Sunday afternoon, we told him what he suspected to be true…that Andrea and Kyle were engaged to be married.

Not long after, I looked out the window and this is what I saw.

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 Aaron was crunching up mulch.  This is his long-standing way of relaxing…of unwinding…of thinking…of dealing with stress. 

My heart just went out to him as I looked at him sitting there, alone with his mulch and his thoughts.  How difficult it was, and would continue to be, for him to adjust to this huge change looming in his relationship with Andrea.

I opened that door of my heart and I cried.  I cried off and on that whole afternoon…some happy tears for the engagement…some sad tears for the reality that is always Aaron.

My thoughts had already, for months, turned to how we would fit Aaron into a wedding.  Initially, I tried to figure out ways that we could make it work, having a wedding down in Texas where we wouldn’t have someone who could help us with Aaron.  I knew that Kyle’s sweet family would do whatever they could to help us.  But still…

A couple weeks after the engagement, everyone was home for Christmas.  We have such a fun time all together, laughing and eating and telling stories as we catch up.  But Aaron doesn’t have such a fun time.  He does for awhile, but then reality hits him.  He is not the center of our time and attention.  He must vie for his place, take his turn talking, and eventually come to the dawning conclusion that our interest in aliens and nanomites and volcanoes and outer space is waning after several hours…and most definitely after several days.

Then there is all the hilarity as we laugh and tease and hug.  The cherry on top is our annual Christmas Eve Bingo game, with gifts to be won or to be stolen…loud and long…and miserable for Aaron.  He does not like parties…he does not like emotion, including too much laughter…he does not like Dad being goofy as he directs the game…and he does NOT like having his gifts stolen. 

It inevitably leads to what Andrew calls, “Aaron’s Annual Christmas Meltdown.” 

And it is not a tradition that we treasure. 

But this is who Aaron is, down to his core.  He can’t help it and he can’t change it…and certainly neither can we.

So when we were all here this past Christmas, while Aaron was occupied in his room and with Andrea’s beautiful diamond sparkling on her finger, we had a family wedding talk.  Specifically we had a “how do we fit Aaron into a family wedding” talk.  And the consensus was unanimous:  Aaron would not fit into a family wedding.

It sounds harsh, maybe.  Unbending on our part.  Heartless.

But you see, Aaron doesn’t see things like we do.  He has no emotional interest in family events like we do.  What matters to Aaron…is Aaron.  I say this a lot, but it’s because it’s totally true.  Aaron wouldn’t care about a wedding, on many levels, just as he never cared about family funerals or celebrations or anything else that was full of other’s emotions.

Emotions drive Aaron nuts.  So does having his routine disrupted…sharing attention with others…sleeping in strange places…and having to be around lots of noisy people who are not aliens.  He would love it if they were aliens, but they are not.  Just another bummer!

And what if Aaron was having a bad seizure day on the wedding day?  That would have been just awful.

So our only reason for having Aaron with us would be FOR us.  For us to say that Aaron was there.  For us to have the whole family together.  For us to have the photos taken (which Aaron would HATE, by the way). 

Andrea and Kyle’s wedding day was a day for them, and for both our families.  A day to relish each other and to enjoy every sweet moment to the fullest.  Aaron, honestly, would have made it impossible to do so.

Therefore, Aaron stayed back in Kansas.  Abigail “watched over” him, as Aaron says.  She and her fiancé Corey, and Abigail’s parents, David and Melissa, had tons of fun with Aaron.  At least I like to think it was tons of fun for them.  Ha!  It certainly was fun for Aaron. 

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And let’s not forget Gracie and Cosmo, who became Aaron’s furry friends.  He loved every minute of doggie licks and snuggles!

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We all live life wanting no regrets.  But when you have a child with special needs, especially behavioral issues, you sometimes must shift around your definition of “regrets.”  We do regret that Aaron couldn’t be at the wedding, but we don’t regret our wise decision to not make him attend an event that he would truly detest. 

Our special Aaron definitely makes our life unique and forces us to sometimes make very difficult decisions.  Often the best decision for Aaron, though, is the hardest decision for us to make, but Aaron’s needs and his happiness is what must come first.   

And trust me, we’ve all learned that lesson the hard way over the years…more times than I can say. 

Now the holidays are right around the corner, and we’re about to see how Aaron handles his new…

GRAND-BROTHER!!! 

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Parts and Pieces

I walked out into the garage the other day and this caught my eye.

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What is this?  It certainly looks like a small trash can that contains little pieces of paper.  It is that, but it is also much more.  So much more, at least to me. 

You see, this trash can holds the small pieces of paper that are left when Aaron cuts out a coupon for me.  Aaron cuts out the Sunday coupons every Sunday, rain or shine, do or die.  He has quite the coupon cutting routine going on as he positions everything just right.  His pillow on which he sits, his coffee beside him, a particular pair of scissors that are used ONLY for coupons, the coupon box…it’s all placed just so-so before the cutting process even starts.

Then he methodically cuts each coupon on the dotted lines (more or less), and if there is final perfecting needing to be done…if the dotted line cutting isn’t quite accurate enough…then he will continue to cut around the coupon that he is holding until it is just right.  Thus he has small strips of paper that fall to the floor in front of him. 

These strips of paper cannot just be scooped up and thrown away.  No, no!!  He carefully takes each thin strip of paper and cuts it into even smaller pieces as he holds it over his little trash can.  For weeks and weeks, these paper strips pile up inside his green trash can until finally, someday…when the can is very full…Aaron, and only Aaron, will decide to throw them away and start all over. 

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When I glanced at the familiar trash can that day, seeing all the colors and sizes of papers inside, I immediately thought that this is such a true picture of Aaron himself.  There are so many parts and pieces of Aaron, just as all of us have parts and pieces, but Aaron’s are truly unique because of his autism.  Looking at all the pieces of what makes Aaron…Aaron…gives much understanding of what makes him tick.  Maybe it will also give all of us some needed understanding of so many others who are one-of-a-kind special people, yet similar in many ways as well. 

Let me give you some examples of our Aaron’s parts and pieces.

I’ll start with coupons.  Sometimes I will put a Dillon’s coupon in the red coupon box.  If I haven’t had time to sort the coupons by the following Sunday, this is where I will find the Dillon’s coupon. 

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It’s under the bench beside him.  This is because Dillon’s coupons are odd to Aaron and don’t belong with regular coupons. 

This way of thinking is also why I found these a few days ago.

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These are Skittles, but not just any Skittles.  They are misshapen in some way, so Aaron won’t eat them.  To the side they go, to be later thrown away.

This same Aaron principle is why I sometimes find pieces of food on a napkin, set aside by Aaron to be thrown away instead of eaten.  Usually this part of his food is shunned because it’s too crisp.  He can’t just push it aside on his plate.  It must be completely removed from the plate.

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Aaron must nearly always have a spoon and fork when he eats, even if he’s eating a finger food that requires neither.  And multiple napkins, for sure!

Aaron always, always has a salad when we eat in a restaurant.  Often the salad is served on a plate, which he never minds at all.  But here at home, salad must be in a bowl.  One night I suggested that he eat his salad on a plate, to make it easier.  He stood by the table, staring at the offending plate, and then told us that he just wouldn’t eat salad that night.  He wasn’t angry…just very matter of fact.  So I got out his bowl and he ate his salad. 

Aaron enjoys watching Wheel of Fortune at 6:30, after supper.  One evening I asked him if he was going to watch, and he said yes, so I told him to turn on the TV.  He paused.  Why?  Because it was 6:25…and Aaron will NOT turn on the TV for Wheel of Fortune until 6:28.   Yes, you read that correctly.  6:28.  On.  The.  Dot.

6:25 was a ridiculous idea.  Aaron stood there, staring at the clock for a few seconds before his eyes riveted back to the television screen, black because it was OFF.  Clock.  Screen.  Clock.  Screen.

Finally, he spoke.  “Should I turn it on at 6:27?” he cautiously asked.

I took this event as seriously as he did as I told him that I would turn it on, so he ventured out and did just that. 

VICTORY!!!  At least for that one night. 

He wants to only eat lunch at 12:00 on the weekends when he’s home, or maybe after…but NOT before 12:00.  I asked him one Saturday if he wanted to eat lunch and he said yes.  Then he stopped and looked at the clock.  He then said no to lunch.  I knew why, but I asked him anyway.

“It’s 11:48,” he replied patiently to his silly mom.  “I’ll eat at 12:00.”

I’ve watched him sitting on his bed carefully watching his clock before writing his time-to-bed in the log that he faithfully keeps.  As soon as the clock is precisely on the next minute, he will write down the time.  Or I’ve seen him write down the time, look at the clock as it suddenly is on the next minute, and then watch as he scribbles through the time he wrote in order to put down the exact minute. 

And when Aaron watches a DVD, he watches it from the very beginning to the VERY end…all the credits…EVERY single line and word.  He does the same with a book, reading the very first page, the table of contents, and ending with the index in the back. 

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I’ll never forget how I learned that about Aaron.  Years ago, he was reading one of his Handy Answer books and he came to me with a question.  “Mom, what does http/www. ,mean?”  I asked him to show me what he was talking about, so he showed me the very end of the book with all the references to various web sites.  Even after I told him what it was, and that he didn’t have to read that, he continued to read every single one. 

Living with Aaron can be so many things because of his many parts and pieces.  It can be hilarious, fascinating, entertaining, demanding, frustrating, and maddening.  All in one day!!

And just as there are outward displays of his varied parts and pieces, there are many inner examples of Aaron’s unique design.  His way of thinking…of processing life…of feeling valued, or not…of feeling important, or not.  Those parts of Aaron are sometimes very difficult to predict, to understand, and to handle correctly. 

It’s his inward desires that, if unmet, are often understood better by us only after angry eruptions on his part.  This is very typical of those with autism.  Aaron already has a hard time talking to us about his feelings or desires, but it IS those very feelings and desires that drive him to outbursts of anger and resentment. 

So again, we are seen trying to fit together another aspect of Aaron…more parts and pieces, like his coupon pieces, that demand to be seen and understood for what they are. 

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We have been a party to this inner part of Aaron for some time now as it relates to his sister falling in love.  Andrea and Kyle will be married next month, so this occasion has opened a whole new door to us…and especially to Aaron.  Matters of the heart actually open all sorts of doors.  It’s been a very interesting, and sometimes very sad, process…one that I will write more about later. 

One that has plenty of parts and pieces of its own!  Stay tuned! 

 

 

 

 

 

 

 

 

Mentioning It

On our way to Aaron’s day group this morning, we started listening to Aaron’s current music choice – The Best of Alabama.  Aaron LOVES listening to music while we drive, unless he’s talking non-stop…which means he will stop the CD, say his piece, start the CD, stop the CD to say more, start the CD, stop it again. 

You get the idea. 

He will often, after those stops and starts, decide to push the button that takes the CD back to the beginning of the song.

“I couldn’t hear it, Mom.  You were talking,” he explains.

ME???!!!

And Aaron doesn’t seem to notice at all my long sigh or my rolling eyes.  His eyes are staring straight ahead out the front windshield as he is absorbed in the song.  If the song is one of his very favorites, he will work his finger magic – rubbing his hands together and doing his unique finger work, sometimes very briskly and with a huge smile on his face.  Other times he is slow and methodical.  Here’s a video:

 

 

In the van, he usually holds his hands up high enough for people driving beside us to see his hands.  He honestly looks like a mad scientist hatching a new experiment.  I wonder what the other car occupants think as they see Aaron.

I wonder what lots of people think as they see Aaron.

I know what I think.  Well, actually, my thoughts depend on many things.  But on a normal day…normal for us, that is…I think that Aaron is pretty amazing and often very funny.

Autism is like that.  We have levels of amazement mixed with levels of laughter thrown in with levels of frustration.

Aaron is the constant.  He is the reason for these levels that we experience. 

Our constant…Gary and me…must be God and each other as we handle the other constant – Aaron.

So back to the Alabama music.  The first song was “Gone Country.”  Aaron was his usual excited self as he did his hand and finger thing while we drove down the road. 

“He’s gone country,” Jackson sang, “look at them boots.  He’s gone country, back to his roots.  He’s gone country,…”

Finally, Aaron said with some exasperation, “He keeps mentioning it!!”

HaHaHa!!! 

Aaron, of course, was paying attention to each word and those repeated words were getting on his nerves!

Now this is particularly funny to me because if there is anyone on planet earth who keeps “mentioning it,” it would be Aaron.

For instance, just after Aaron observed the repetition in Jackson’s song, we passed a little motel.

“That’s a motel,” Aaron flatly said.  I knew exactly where he was going with this because Aaron has observed that there are motels, but there are also hotels.  He has talked hotel and motel into the ground, but he can’t resist the urge to keep “mentioning it.”  We have looked up the definitions of motel and hotel, too.  Anything to explain it to Aaron, trust me.

I mean, who would even notice that?

Aaron would…and he did.

“There’s another motel,” he continued as we passed one. 

“There’s a hotel,” he then said seconds later.

And a couple miles down the road, I heard him soberly say, “Inn.”

Yes, we drove by an inn.  Great!  Now we have a new word in the mix!

Again, he didn’t notice me shaking my head.

There are times that Aaron does notice the messages that our bodies are sending.  Those times usually occur when Aaron is angry or on the verge of anger.  And often what he thinks he sees is nothing that we have done on purpose.  I probably see this more in the mornings than any other time.  That’s because if Aaron wakes up on the wrong side of the bed, he is hyper vigilant and sensitive to every word and every movement that comes from me.  I can be as flat in my reactions as possible, but invariably something will catch Aaron’s eye.

I saw this one morning when Aaron trudged into the kitchen, instantly saying that he was tired and that he didn’t want to go to Paradigm.  My affect was unemotional as I told him I was sorry, and then proceeded to get his coffee.  I have no idea what I did, but Aaron saw something.

“You make weird hand signals,” he commented.

And I knew that I needed to just go about my business, not responding or arguing or asking for an explanation.

I especially knew it later when in his bedroom Aaron got in one more parting shot as I walked away.

“Weird hand signals lady!” he said with more energy.

Talk about “mentioning it!”  Aaron won’t let these issues go easily, but if I comment it’s like throwing gasoline on a fire.  He drank his coffee while I got ready, and later he was fine.  No more mention of my weird hand signals.

And trust me, the irony was not lost on me as we drove to Paradigm later and he rubbed his hands together with delight during a favorite song.

Weird hand signals, huh? 

Aaron wanted to stay home one day this week.  He was tired after some intestinal issues the day before, but still he could have gone.  I didn’t push it, though, but he knew I wasn’t happy about it.

“You’re being quiet toward me,” he observed. 

It’s good for him to know that…good for him to see the effect that HE has on us…and good for him to verbalize it. 

The next day, he did go to Paradigm but he wasn’t very happy again first thing in the morning.  As he wearily talked to me in the kitchen, and I responded, he was eyeing me carefully through his tired eyes.

“Mom!” he blurted out.  “Stop doing things with your funny eyes!!”

I had to hide my funny eyes and face at that one.  I was thankful that he walked away so that I could at least smile largely. 

A trip to Dillon’s on our way to Paradigm that morning cheered him up tremendously.  Talk about things to notice and things to mention!  Dillon’s is full of possibilities.

And did he ever find a big one!  As I checked out his pack of gum he found, he had walked away…and soon I heard this.

“MOM!!  Can I put this in my bedroom??!!”

Everyone else turned with me to see Aaron carrying this huge thing.

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Others smiled and laughed with me, little children were looking up with wonder at loud Aaron holding this large spider, and the screen behind Aaron said, “Monitoring in Progress.” 

As if seeing this in person isn’t enough, we were also on the monitor screen!

So I paid for his gum, walked back to the Halloween shelf with Aaron, and together we also looked at all the varieties of spider skeletons, dinosaur skeletons, bird skeletons, and on and on…with lots of laughter mixed in!

Speaking of “mentioning it,” Aaron told Gary all about it and our next door neighbor and the boys across the street.  He talked and talked about it during the evening. 

Aaron thinks it’s ok for him to keep “mentioning it,” whatever “it” is at the moment.  Over and over and over and over, until Gary and I have glazed eyes and tired ears. 

But have I mentioned that Aaron sure can make us laugh and sure can make us see a side of life that we would otherwise miss?

THAT is worth mentioning over and over and over and over.

P.S.  By the way, the phrase “gone country” occurs 21 times in Alan Jackson’s song.  I know because I came home, looked it up, and counted it. 

You’re welcome, Aaron.     

Or should I say, “Thank you, Aaron!”  😊

 

 

Feeling The Lines

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

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

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

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

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

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

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

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

“Why do I need to stop?” he asked.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I just wanted a normal face.”

 

 

 

 

True, Special Friends

Aaron attends a special needs day group on Monday through Friday.  This day group, Paradigm, has clients of various ages – all adults – that have a variety of special needs.  They are out in the community nearly every day attending a host of different events and activities. 

Aaron has developed friendships there over the years.  Like any group that is together as often as they are, there are ups and down.  Then you throw in the special needs, medicines and side effects of medicines, behavior issues, lack of filters, and so much more – and there can be plenty of noise and drama and action. 

But there is something else I have seen there that is very touching.  I have seen empathy for each other.  I have seen real caring.  And I have seen forgiveness.

Aaron is in a very good place right now with his behaviors.  He has, in the past, struggled with anger and has had eruptions because of his lack of control.  He has come home with broken glasses, broken watches, ripped clothes, and many tears…his not being the only tears, for sure.  So while he is still loud in his playfulness, and loud in his talking, and loud and sometimes inappropriate in his teasing – he is basically very happy and helpful. 

When he was having behavior issues at Paradigm, there were very many times when it was his friends who warmly welcomed him back the next day.  He may have hit one of them, or insulted them, or yelled at them…but they would warmly tell him that it was all right, that it was a new day, and that they still liked him. 

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When he would have a rough day, he wouldn’t want to go back to Paradigm the next day.  Almost always, though, with our encouragement he would return.  I remember times when he would want me to walk into the center with him, as if my presence would buffer him from either being rejected or from bolting back out the door before he faced his friends again.

I would hear his friends call out to him.  “Hey, Aaron!” one would say, and then another.  I was just amazed at their forgiveness and their fresh start as they helped Aaron pick up the pieces and have the courage to face them again. 

Once I walked with Aaron over to a table filled with his best friends…all girls, by the way.  😊  Aaron was very nervous about talking to them after whatever had happened the previous day, but they spoke to him as if nothing had happened at all.

Aaron’s eyes filled with tears as they darted around the table, afraid to make contact. 

“I told Mom I was afraid you wouldn’t like me,” he finally said, his voice trembling and thick with emotion.

He was so like a child, this adult man.

“We like you, Aaron,” one of the girls said.  And they all said those same words as they affirmed to Aaron that he was their friend.  What wasn’t voiced, but was as clear as the morning sun, was that they understood Aaron, and they loved and accepted him just the way he was.

Aaron has made huge strides in learning to accept his friends there, as well, on many different levels.  He is sometimes curious about their physical handicaps…wheelchairs, muscle issues, deafness, seizures, etc.

He has seen many behaviors that are disruptive, loud, angry, and irritating.  And other behaviors that are just very unique – the young man who wears a suit and tie every single day, or the one who keeps a towel around his neck, or the person who rocks – and so many, many more. 

He has been curious about those who can’t hear or who can’t talk well.  About those from different ethnic backgrounds.  Or ones who are from different countries.

“Mom!” he said one day.  “Giselda said she was sorry in a Mexican way!” 

What is very sweet to me is to see how this setting is now so very normal to Aaron.  I hope that makes sense.  We might walk into Paradigm and see special needs.  Aaron walks into Paradigm and sees friends.

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Not long ago, as Aaron and I stood at the card counter trying to pick out a greeting card, Aaron remembered that he wanted to tell me something.

“MOM!!” he bellowed for all around to hear.  “I forgot to tell you something!!”

“You did?” I asked when he paused in order to see if I heard him.  How could I not?!

“YES!!” he continued.  “Guess what?!”

Aaron is great at making an effect.

“What?!” I obediently asked.

“Shauna got a NEW wheelchair!!!” he exclaimed.

My emotions tumbled at that point.  I didn’t let Aaron know this as I responded with excitement and asked him to tell me all about it.

You see, most 33 year old men would be saying things like:  “Guess what?  So and so got a new job…or a new car…or is having a new baby.”

But Aaron was just as excited about Shauna’s new wheelchair as anyone else would have been about those other life events.  It was sweet, but sad to me in a way, too.  It was just something that drove home to me once again, out of the blue in front of the card counter, the reality of Aaron’s life.

As I dropped Aaron off at Paradigm a few days later, Shauna and some of his other friends were coming down the sidewalk.  Aaron quickly lowered his window.

“Shauna!!!  Come and show my mom your new wheelchair!!” he yelled.

So she rolled over to the van to show off her new ride, and I loved every minute of it.  Aaron was so very excited as he jumped out, rubbing his hands together in pure delight.  Shauna was all smiles. 

How could I be sad when there are so many reasons to be thankful?

Watching him walk into Paradigm with his friends just gives me every reason in the world to be happy as I drive away, on so many days. 

And to the business owner across the street who one day called the Paradigm clients “a circus”:  I would choose that “circus” over yours any day of the week. 

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The Plan

Today is a super special day!  You see, it’s my anniversary…OUR anniversary!  The day that Gary and I said “I Do!!”  It was 39 years ago that I wore the beautiful dress that my mother had made, every stitch lovingly sewn by her hand.  39 years ago that I walked down that aisle of the brand new Johnston Chapel Baptist Church, the first bride to do so in our new sanctuary.  39 years ago that I joined my hand with Gary’s and we embarked on our new life together. 

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Doesn’t it sound perfectly romantic?  And it was!!  It was because we planned it that way.  Every bride plans her wedding day to be exactly as she wants it to be.  We’re watching our daughter, Andrea, plan her wedding to Kyle now.  It’s fun to see their special day taking shape. 

No bride and groom plans for things to go awry on their special day.  Sometimes things don’t go as planned on the big day, but the plan is for all to be as perfect as possible.  Perfect plans, planned with perfection…the dress, the tuxes, the flowers, the attendants, the food, the music…each checked off the list as the plans take shape. 

The PLAN!!

Fast forward 39 years, to this morning.

I had a plan for this morning.  I was going to sleep in on this Saturday morning.  My normal wake-up time is 5:30. That’s a.m.  So on a Saturday, I love having no alarm go off.  I love waking up when I wake up, which is never real late but any time past 5:30…A.M.!!…is late for me. 

Part of my careful plan is to even set the coffee-maker alarm for one hour later than normal.  Ahhhh…luxury!!

Therefore, you can understand my irritation when our old Great Dane stood up this morning in our bedroom where he sleeps, and halfway shook himself, and woke me up.  I knew…I just KNEW…what I was going to find.  Jackson doesn’t get up off his mattress on the floor very easily now because he is so old and stiff, but the one time that he will get off his bed is when he either has to go potty, or he already HAS gone potty.

This morning it was the latter.

And it wasn’t even 6:00 yet…which means it was five something…too close to my normal wake-up time for this Saturday morning when I had so carefully planned to sleep late!!

And yeah, there was poop involved, on the floor and on his bed.

I did finally go back to bed after the clean-up, but it just wasn’t the same.

Happy Anniversary day!

Dear Gary had given me flowers yesterday evening, and this morning they were joined by the sweetest card.  Then later, coffee cups in hand, we walked down to our little Mulberry tree with Jackson sniffing all around, and we picked mulberries.  It’s so us, this simple kind of thing.  It’s the simple life that we love in the place that we are.  I was planning breakfast on the patio with the birds and me and Gary, then making his favorite cheesecake, and on I went with my planning.

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Then the back door opened.  Gary and I saw Aaron coming across the yard.  He was early to get up, as well.  We both looked at each other, knowing what we each were thinking.  Aaron joining us wasn’t really in our plan for this morning quite yet.

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Aaron wondered what we were doing.  He was unimpressed with the fact that we were picking mulberries.  He wanted us to be back in the house, where we could see that he had his coffee and where we could listen to him talk.  But we continued picking our mulberries while Aaron walked back to the house, a little in a huff because his morning wasn’t beginning as planned, either.

Soon I did fix our breakfast, where Gary and I were once again joined by Aaron.  He was still a bit huffy and on edge, but bacon helped.  I thought it was quite ironic that he was wearing a shirt that said, “No Bad Days.”  HA!!

I wish it could be that simple, but with Aaron it’s just not.  A day not going as he so carefully plans can set him on the wrong path for sure, and Gary and I are dragged along as well.  But breakfast, and joining me as I watered the flowers, and going with Gary to the hardware store, did a world of good for Aaron…and for us…and so our day has been going along just fine.

Not perfect, though, as we would like to plan for our anniversary to be.  But it’s us, with Aaron, and it’s really what it’s supposed to be.

39 years ago, in that pretty church with all our plans coming together, I would never ever have dreamed of having our 33 year old special needs son still living with us.  It’s not that we don’t love Aaron.  It’s just that having ANY child with special needs, and all that this life entails, would never have been in our master plan. 

But our life, with Aaron, WAS in God’s master plan for us…because He is the Master of our lives.  We’re not.  It really is that simple.

Yet not that easy, on many days and in many ways.  We have questioned and struggled and been angered plenty of times over these years.  And still, God reminds us that our plans are not always His plans.  He tells us that He knows the path that we take, because it’s the path that He put us on.  It may be a path with suffering and pain, with questions and even anger, but it’s always with God beside us and under us and all around us. 

I’m thankful that God also forgives us, because we don’t do this very well on some days.

I looked at my cup of tea this morning as we ate breakfast on the patio, Aaron included.  My tea was in a wonderful mug that our friend, Terri, helped Aaron make for me while we were out of town last week.  He wasn’t sure that he would like painting, as he calls it…and he still isn’t sure that he liked painting.  But he is very proud of that mug.  He even opened the running dishwasher the other night when friends were over so that he could show them his mug that he made for Mom. 

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I will treasure that mug.  I will treasure our Aaron, even on the trying days, with God’s strength.

And I will treasure the careful plan that God has made for our life, including the trying days, with God’s strength. 

Our life began with a plan, and our life will end with a plan. 

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God’s plan!  The best plan!!

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