Category: Patience

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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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! 

 

 

 

 

 

 

 

 

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.”

 

 

 

 

Happy, Helpful, and Forgiving

It’s beyond time for an Aaron update.  I do believe I could write every day about life with that young man of ours.  I wish I had that kind of time, so since I don’t, I’m sitting here wondering how on earth to corral my rambling thoughts on recent…or not so recent…Aaron antics.  And not only his antics, but what those actions show about the real Aaron, deep in that brain of his.

Aaron has been mostly happy lately.  He is showing that happiness in various ways.  One way is by being extra helpful, so he’s been taking out the trash and the recycling; setting the supper table; carrying in groceries; and even helping others in ways that are…well…a little intimidating.

I saw that for the second time yesterday as we left Sam’s.  We were walking to our van when Aaron spied a lady near where we parked, putting her items in her car trunk.  She had a couple heavy packs of drinks.  Before I knew it, Aaron was running toward her.  I knew what he was going to do because he had done this same thing last week at Wal-Mart.

“Aaron!” I said.  “Come back here!”

But he was determined to help this random lady.  She looked up, a tad startled at first, but then she quickly relaxed when she saw Aaron.

“Hey!” Aaron blustered.  “I’ll help!!”

She smiled and actually let him!  Then she looked at me with a big smile, which made me very happy, as Aaron proceeded to put her two heavy drink packages in her car.  She thanked him as he stood there with a huge smile, rubbing his hands together in his Aaron way, and then came back to the van.  And I don’t know who was happiest at that point…Aaron, or me!

The lady last week at Wal-Mart was kind but said no to Aaron.  So as I did then, I once again explained to Aaron that his offer was very nice but that he had to understand that running up to various women at their cars might be scary to them.  Aaron thought this to be strange, even after I explained it to him.  It’s so amazing that he doesn’t get it, that social norms elude him. 

I had just seen this demonstrated a few minutes prior to the parking lot incident, while we were in the self-checkout lane inside Sam’s.  A man in the other lane beside us was trying to get the attendant’s attention.  She was talking to someone else and was unaware that this man needed her help.  He continued to try to get her to notice him.  What I was noticing was that this exchange was bothering Aaron.  He was bothered by the fact that the man’s voice was rising, and he was bothered by the fact that the attendant didn’t hear him.  Therefore, Aaron decided to be helpful once again.

“HEY!!!” he yelled out. 

Well, well, well.  This did get the attendant’s attention.  And Aaron got a very annoyed look from her, with a raised eyebrow to boot.  I apologized to her while correcting Aaron, and then she realized about Aaron, and she was kind and understanding, and Aaron’s face turned very red, and I have no idea what the irate man was doing. 

WHEW!!!!

It was another teaching moment for Aaron, with me doing the teaching and Aaron looking around for someone else to help. 

OK, where was I?

Oh yes, I was talking about how happy Aaron has been and how he shows it.  He was so happy to see my good friend, Jennifer, in Sam’s that he gave her a big hug.  Yeah.  SO big and strong that I texted her last night to see if she was hurt.  She said she’s not.  Oh, Aaron!  Just another social norm and boundary that Aaron doesn’t get. 

Sam’s was pretty exhausting yesterday, can you tell?

In fact, by the end of the day, Gary and I were at the end…of our patience and our wits and our nerves.  I don’t know, it was just such a tiring evening with Aaron.  He wasn’t bad at all.  But goodness, he LOVES to talk!!!!

That’s another way that he shows his happiness.  Talking!  Almost incessant talking!!  He’ll be in his room for a few minutes and then we hear him barreling down the stairs.  He finds us no matter where we are…outside, downstairs, in the garage, on the porch or patio, or in the bathroom.  It matters not!  Aaron has something to say and he WILL say it, even if he’s said it a million times before.  You think I’m exaggerating?  It certainly doesn’t feel like it to me and Gary.

We often tell Aaron that we just talked about this…that he needs to look that up on his computer…that we don’t have a clue about it…and we even throw up our hands as we say, “I DON’T KNOW!!!!”  But Aaron is not easily deterred as he pushes on with his comments and his questions and his observations…over and over and over. 

I wish I could say that I’m ever the wise and patient mom.  I wish I could give examples of how to always be on top of these issues.  But in all honesty…and I do try to write this blog with all honesty…I’m just not.  Not always patient and calm and understanding, much as I want to be. 

At the end of last night, when I was at the end physically, Aaron and I were in the kitchen.  He was talking again and I was just so done.  He, I thought, spilled a little water on the kitchen floor and that was it.  I didn’t yell, but I talked through…I’m ashamed to say it…gritted teeth. 

“Just clean up the water,” I said, in my “gritted teeth” voice.

I hurt Aaron’s feelings. 

“Shut up!” he responded.  More than once.

This prompted a stern rebuke from Gary.

Well, the rest of the evening went fine as Aaron and I went through his bedtime routine.  But when it came time to give him his hug and a kiss on his cheek, he put his arms under his covers and said no.  No goodnight.  No hug.  No kiss. 

“Because you were mean to me,” he said.

So I left his room.  But before long he was at my bathroom door.

“OK, Mom,” he said.  “I’ll say goodnight.”

He walked into his room with me following.  He got under the covers, held out his arms for my hug and accepted my kiss on his cheek.  Bless his heart.  He so wants our love.

Forgiveness is a big part of our life.  We have to forgive each other a lot. 

God forgives, too, and I’m surely thankful for that.

And God understands, as my dear friend Linda reminded me this morning.  She understands this kind of weariness as she reminded me that Jesus often tried to get away to be alone…but the crowds still followed Him.  I’m so thankful that God understands, and ever thankful for the forgiveness and peace He gives.

I’ll end on a funny note.  I am sometimes amazed at how quickly Aaron can be irritated by me.  I mean, really – ME?!  Be irritating?

It is very puzzling, though, at what can set him off.  Like the other morning, when feeding our Great Dane and fixing his pills in some peanut butter, I dipped into some peanut butter for myself.  This really bugged Aaron. 

“MOM!!  You act strange!” he said angrily.

“How do I act strange, Aaron?” I asked.

He stared at me a minute.

“In lots of DIFFERENT ways!” he replied as he turned and walked away.

Now if that’s not the pot calling the kettle black!  HaHa!!

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The Cold Snap

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

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

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

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

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

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

 

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

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And grew…

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

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

Cold snaps hurt.  And they take many various forms.

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

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

Cold snap.  Recovery.  Then another cold snap.

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

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

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

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

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

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

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

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

 

All the bitter weary ways

Endless striving day by day

You barely have the strength to pray

In the valley low.

And how hard your fight has been

How deep the pain within

Wounds that no one else has seen

Hurts too much to show.

All the doubt you’re standing in between

And all the weight that brings you to your knees.

 

He knows

He knows

Every hurt and every sting

He has walked the suffering.

He knows

He knows

Let your burdens come undone

Lift your eyes up to the one

Who knows

He knows.

 

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It’s NOT a Small World

On a recent night, as Aaron and I watched a video and he ate his tortilla chips, I looked over to see that he had perched a bowl on the ottoman in front of him.  Without even asking, I knew what that bowl was for.  Aaron has multiple bowls for multiple uses, all over the house.  Later, after our video was finished and he had cleaned up his area, I looked inside his bowl that he had brought into the kitchen.  Can you see what’s inside the bowl?

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Very, very tiny crumbs are in the bottom of that bowl.  When Aaron is eating crumbly chips, he likes to have a bowl in which he tries to ensure that the crumbs fall.  It’s easy for me to want to fuss at him for taking a whole bowl for such a few crumbs, but I know that my fussing will not change his bowl habit.  He will find a bowl to use, even if he must hide it under his blanket so that I don’t nag him about it.  Yes, he has done that.  So I just let it go…let him keep his bowl for such a seemingly silly use…and thank the Lord for my dishwasher!

Those little crumbs are a perfect picture of an aspect of Aaron that can be both humorous and maddening.  And as always, it’s up to me to decide which it will be.

So often, persons with autism fixate on what to the rest of us would be such insignificant matters.  Like those small crumbs, we would tend to just brush such matters away without a second thought .  But not Aaron!  Not at ALL Aaron!

Take the word, “of.”  Yes, “of.”

Did you realize that there is a movie entitled, “Battle:  Los Angeles?”  And that there is another movie entitled, “Battle Of Los Angeles?”

Aaron watched these two movies a few weeks ago, so Gary and I became ever so aware…once again, because the same thing happened the LAST time he watched those movies…of the importance of the word, “of.”

“Mom!” Aaron would say as he bound into the kitchen.  “I’m watching Battle:  Los Angeles!  Not the one that has the “Of!”  And off he would go in some long tale of the latest alien doings in “Battle:  Los Angeles.”

Then later:  “Mom, did you know that in Battle Of Los Angeles…not the one I’m watching right now – the one that has the ‘of’…”  And another long story would follow.

And yet again:  “Mom, in Battle of Los Angeles…the ‘of’ one…”

It was of upmost importance that he…and we…and anyone else listening…be clear on whether he was talking about the ‘of’ one or the non-‘of’ one.

Are we clear?!

Such a small matter, but huge to Aaron.

Dinner plates done right are also of utmost importance to Aaron.  A few evenings ago, at supper, Aaron had a barbecued rib on his plate.  He ate the rib, then tolerated us putting some cucumbers and ranch dip on that plate.  He ate the cucumbers and dip, then stood up and opened the cabinet door, and took out another plate.  We had asked him if he wanted another rib, and he said he did, but he didn’t say another word about what we knew was bothering him.  He would NOT put his second rib where cucumbers and dip had been, so a new plate was in order.  With his rib on a clean plate, he was happy.

Meals can be interesting with multiple plates, bowls of various sizes, two or more forks, a spoon and a knife no matter what we’re eating, and always more than one napkin.  May as well not fight it!

Life for Aaron is crammed full of these little crumbs.  Like the old children’s story of the Princess and the Pea, where the princess felt that little pea under all those mattresses, Aaron does feel the weight of all these matters that to us are very small and silly.

Therein lies the problem, though.  They are not small and silly to Aaron.  If we don’t understand that, then we will feel the weight of Aaron’s anger and frustration.  He can’t necessarily verbalize what he is feeling, or even understand it himself, but the issues are huge to him and not to be swept under a rug, so to speak.

Aaron’s life has a certain order to it, and he needs those around him to be on the same page with him.  However, most of us are not only on a different page, we’re in a whole different book!  So we’re always having to be aware of what matters most to Aaron, and when, and why, and how…if at all possible.  Notice I said that we must be aware of what matters…not even understand it…but at least to be aware.  And to place the importance on it that Aaron does.

So there may be more bowls to wash, or plates or silverware.  There may be more undue emphasis on minor little words like ‘of.’  More questions to answer, explanations to wade through, and endless stories and comparisons to endure.

But each little crumb collected in that bowl is a part of the puzzle that is Aaron.  Each sigh that escapes our lips…each roll of our eyes behind his back…each scratch of our head…is just part of the process of piecing together all that is Aaron.

Along with all that, though, is plenty of laughter and lots of smiles…and a view of our world that is anything but small.

 

Life is Like a Coupon Box

I walked into the kitchen on a recent Sunday, after Aaron had completed his usual Sunday coupon clipping chore.  There on the counter lay a Dillon’s coupon, one that I had put into my coupon box several days earlier.  I knew right away what this lone coupon on the counter meant.  It spoke volumes to me as it silently stared up at me…..volumes about our Aaron.

You see, this coupon…

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Does NOT belong among these coupons.

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The Dillon’s coupon is not a regular coupon to Aaron, and only regular Sunday coupons are to be placed…precisely…in the coupon box.

Silly mom for thinking otherwise.

Aaron’s life is like that coupon box.

Aaron wants most things in his world to be done in a certain order…..words said in a particular way…with order and sequence and expected results.  But life doesn’t operate that way, no matter how much Aaron tries to orchestrate it to do so.

I saw a small example of this the other night in our family room.  Aaron was looking forward to watching one of our favorite television shows.  He wanted to know what time it was coming on, so I told him what the television guide said.  BUT…I had to add…the football game that was on earlier would no doubt disrupt even the best planned TV schedule.

The TV guide said our show would air at 8:30, but at 8:30 another program was still on.  Aaron was not happy about this development.  I explained the situation, multiple times, as Aaron sat in his favorite chair with his legs covered by his favorite blanket and with his favorite snack-of-choice on the ottoman in front of him. 

He sat there in misery, staring at his jar of cashews, and not-so-patiently waiting for his program to start.  Football games are the epitome of a messed- up world, in Aaron’s orderly world.  A 15 minute quarter may last 47 minutes, for crying out loud, and THIS IS UNACCEPTABLE!! 

So there Aaron sat in his chair, waiting for the other boring show to end so that his anticipated show could start.  But that wasn’t all that wasn’t right in Aaron’s world.  It was the cashews.

You see, he will only eat his snack-of-choice during the actual television program.  Not during the offending show that was still playing.  Not during the commercials.  ONLY during the actual program that is to be seen will he eat his actual snack that is to be eaten.  So he sat there, staring at his open jar of cashews in front of him, but forbidden because of the dumb show that was still on…because of the dumb football game that was before that…on this day that was getting dumber by the minute. 

We made it through that cascading torrent of dumbness…barely…without a meltdown or without Aaron giving up on it all and returning to his room like he threatened to do.  And on the very second that his program appeared on the screen, Aaron’s hand dipped into the jar of cashews and his world was set upright on its axis, as it should be. 

The coupon box once again only held the correct coupons.

Last night, as I waited for Aaron to get his bedtime routine completed, I watched him write down his time-to-bed in his special notebook…a new notebook, by the way.  His other is year’s full of the times he went to bed and the times he got up in the morning.  Aaron wrote down the time…10:14.  He was preparing to close his notebook, but paused and then gave a little sigh as he scribbled something out in his Went-To-Bed column.   

“What happened?” I asked.

“It went to five,” he flatly answered. 

Yes, the time changed the second he finished writing 10:14.  It became 10:15, so he HAD to correct the time in his notebook.  Scribbled-out numbers are unsightly, but far preferred over having the WRONG time recorded. 

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The coupon box was once again correct.

Aaron is slowly working his way through watching the complete old Star Trek television series from the 1960’s.  In the opening monologue before each show, Captain Kirk is referred to as Captain James T. Kirk.  Therefore, Aaron NEVER calls Captain Kirk just Captain Kirk.  Captain Kirk is Captain JAMES T. KIRK, people!!

So this conversation happened the other day:

“Mom, who’s your favorite Star Trek character?” Aaron asked.

“Hmmm…” I pondered.  “I guess it would be Captain Kirk.”

Aaron looked at me blankly, as if I had mentioned a foreign character from another show and another time and another planet and another galaxy.

“Who?!” he questioned.

“Captain Kirk,” I repeated.

He continued to stare at me.

Finally…

“You mean, Captain James T. Kirk?” he queried.

Oh, how I wanted to double over in a total belly laugh!!!

But doing so would have highly offended Aaron, so I had to just answer him as seriously as if I was agreeing to the outcome of a very serious discussion about a profound world event.

“Yes,” I sincerely replied.  “Captain James T. Kirk.”

Aaron was very relieved to have this issue settled, and so his Star Trek discussion was continued.

The coupon box was aright once more.

It’s vital that those who live and work with Aaron understand how very profoundly his life and his happiness is tied to the order that he alone sets for himself…and expects everyone else to understand and follow.  Sometimes his desired order can’t be followed, but we must know how to guide Aaron through those times.  Those times when the wrong coupon is in his box, and Aaron most definitely will react, are times that demand great patience on our part. 

When Aaron is deeply frustrated, angry, defiant, or confused is very often a time when the wrong coupon is in the box.  We can’t always see it and we don’t always expect his strong reactions, but we…and everybody else who works with Aaron…had just best realize that there is more going on inside that brain of his than we will probably ever know or even remotely understand. 

It can be so hard and challenging and maddening to us at times…and we know Aaron better than anybody on the planet.  We love him more than anyone, too.  Imagine how very difficult it can be for others to achieve this level of understanding!  And how very impacting in our lives it can be for this lack of understanding to affect us, and Aaron, in a very negative way! 

We have been very blessed with some amazing, kind, understanding people in Aaron’s life.  We have also seen the damage that can come from those who don’t get it.  We have watched this damaging impact in the lives of others whom we know and love, as well, who have special children that have their own coupon box.

Let’s give grace to our children…to the parents of these special ones…and try to comprehend just what each one’s coupon box is really all about. 

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