Keeping Everything in A Row

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“YES!!” he said, “there’s the 2003!!”

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

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

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

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

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

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

And his thread balls!

Of course!

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Fixing the Broken

Last night I felt like this:

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Mangled.  Broken.  Greatly in need of repair.

These were Aaron’s glasses a couple weeks ago after an incident at his day group.  Mixing all the various special needs can at times be volatile.  Even I, who have dealt with many pairs of broken glasses, was surprised at the level of damage done to this pair.  I honestly wasn’t sure that they could be fixed.

I took the rather hopeless mess that used to be glasses into our eye doctor’s office a couple days later.  I hoped that maybe, just maybe, they really weren’t beyond repair.  The kind technician couldn’t hide the look of surprise on her face, which didn’t fill me confidence that anything could be done for them.

Imagine my surprise, though, when before long she returned with this:

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WOW!!  Talk about a miracle re-do of what I thought was hopeless!  She received my profuse thanks with a smile on her face and the comment that she loved a good challenge.  I’m thankful that she did, indeed!

Being the mother and caregiver of an adult special needs “child” with behaviors can be exhausting…physically, mentally, emotionally, spiritually.  I believe that about covers it.  And while I don’t want to come across as complaining, facts are facts and truth is truth.

If there’s one thing I’ve wanted to be on this blog, it’s truthful…truthful without being unkind to Aaron in my honesty.  Talking about being truthful, Aaron is just that…at least in his mind.  He has few filters, and totally does not get social norms.  He is often unaware of other’s feelings.  He gets stuck in his own mind about certain issues and is truly stunning in his inabililty to switch gears and judge those issues with good reasoning.  His own comfort is paramount to him, most of the time, so if his comfort is interrupted or his wishes unmet, we are often met with his anger.

And I get tired.  I get angry.  I did last night, when Aaron who had been happy decided to be rude just before bed.  He and I didn’t have our normal cheerful bedtime routine.  He was still out of bed, on his computer, when I went to bed.  I didn’t even challenge him.  I have no idea when he went to sleep.

I spent time with the Lord this morning, reading about the compassion of Jesus and knowing that I needed that same compassion for Aaron.  Somehow, it’s easier to show compassion for ones I seldom or only occasionally see.  Showing that similar level of compassion for Aaron can be very hard to do over the long term, day after day.

I was very surprised this morning to hear Aaron’s floor creaking before 7:30. Most mornings I must roust him out of bed…very unhappily on both our parts, I might add.  I thought this morning he would definitely be a hibernating bear, but no, he was awake and downstairs early.

He knocked politely on the bathroom door, and when I opened it with some dread, I was so relieved to see him with bright eyes and a sweet smile.  He even received the hug I offered!  We were off to a good start!

We sat in the living room, enjoying the warm fall decorations and soft twinkling lights.  I had intended to sit there and pray, but sitting with Aaron was important, I knew.  We talked softly about some of this and some of that.  Then Aaron decided that he could take his pills, but I reminded him that it was too early.  He wondered why, and once again I explained how he really should take them about 12 hours apart.

“So, Aaron, it’s nearly 8:00 right now,” I began.

He immediately looked at his left arm, pushed up his sweater sleeve, and gazed down at his wristwatch perched halfway up his arm.  I just watched with a smile on my face, waiting for what I knew was coming.

“It’s not 8:00,” he blandly stated as he stared down at his watch.

“Well, I just meant that it’s ALMOST 8:00,” I explained.

“It’s 7:41,” he flatly continued.

Gone was the lesson on the 12-hour rule.  Gone was my caring at all at that point about the 12-hour rule!  In its place was my laughter, deep from inside…much needed laughter.

And Aaron tolerated my laughter, even though he had no idea why the time of 7:41 made Mom laugh.  Many times, Aaron gets angry when I laugh, so I don’t…until he is out of earshot.  But today Aaron let me laugh.  This was a gift.

Later, we sat at the table where Aaron ate a plate full of fried eggs with the yellow hard the way he likes them and where he talked and talked and talked…about separatist droid armies and Trandoshans and commandos and clones…and anything but heart matters.  Or the 12-hour rule.

But it was good.  Very good.

It was our normal.

And it was a gift.  A gift from the same God Who also fills our hearts…my heart…with love and compassion for our Aaron.

I know all too well that we’ll have this again:

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But I also know that we’ll have this:

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Thanks to God who fixes our broken!

“He heals the brokenhearted and binds up their wounds.”  (Psalm 147:3)

 

 

 

Cool Aaron

My phone rang the other day and even before I looked, I pretty well knew it would be Aaron making his daily call from Paradigm, his day group.  Yep, there was Aaron on the other end of the call, talking the second I said “hello.”  He was excited and laughing about Chris, one of the Paradigm staff.

“Mom!!  Me and Chris are playing a game where I can’t talk!”

Well played, Chris, well played!   I just thought this.  I didn’t say it to Aaron.

“But Aaron,” I replied, “you’re talking now.”

“HAHAHAHAHAHAHA!!!!!”  Aaron bellowed.  “I guess I forgot the rules!!”

I laughed as well.  In fact, it felt very good to be laughing with Aaron.  I never know when I pick up the phone in what condition I will find Aaron.  Happy, sad, mad, crying, excited…I never am sure, so it’s with some dread that I answer his calls.

I had reason to feel dread this week because Aaron has been in a state of some anger and belligerence for awhile now.  We’re not totally sure of the why, but we are totally sure that his ups and downs are tiring to us and to his staff and friends at Paradigm.

This past Monday morning was rough at home.  I always let Aaron decide if he’ll go or not, knowing that forcing the issue is a recipe for disaster.  But Aaron also knows that if he does go to Paradigm then he gets extra treats and his meal of choice over the weekend.   He nearly always decides to go, but my reward system can also come back to bite me because the reason he goes is sometimes just for the future reward, and this stresses him to the point of bad behaviors.

Sometimes it’s just a perfect storm for a stormy day from Aaron!

Monday was that day.  Anger at home…then a calming…a fun ride to Paradigm because his music cheered him…and my last admonishment as he left the van.

“Aaron,” I said, “try to have a really good day.”

“I can’t make you any promise,” he seriously replied.

And I had to laugh at that as he walked away.  He was borrowing my often-used phrase when he tries to pin me down to doing something at a certain time, and I tell him I can’t make a promise.  How well he listens and mimics when it suits him!

And boy, it’s a good thing he didn’t make a promise to have a really good day because it was anything BUT a really good day!!  I’m very thankful for the patient staff at Paradigm!

Tuesday saw more issues at home, though not as severe as the previous day.  I was encouraged by his good day at Paradigm, but our evening at home hit bottom again.  He was not happy that Gary and I talked to our daughter on the phone before supper, in our bedroom with the door locked so that Aaron couldn’t come in and interrupt.  Aaron was very rude before supper and during supper.  Tough love ensued, ending with Aaron’s Cheddar Pasta Salad being taken away by Dad before he was through…and all his snacks being bagged up by Mom and put inside the locked van.

Well!!

Aaron finally calmed down as the evening progressed.  He turned a corner, looked at me as we watched a show, and surprisingly…and nicely…said, “Mom, I’m sorry.”

“Thank you, Aaron,” I replied.  “I’m sorry, too.”

“I like you, Mom,” he quietly said.

“I like you, too, Aaron,” I affirmed.

But the snacks stayed in the van, a test of his sincerity.

The next morning, yesterday, saw him irritable again and not wanting to hurry out of bed or hurry to get himself ready.  I don’t tell him to hurry – I’ve learned better – but he knows the underlying theme.

“Don’t rush me!!” he stated.  “I have no time to hurry!!”

Oh, Aaron!  I want to both laugh and cry when he talks that way!

So, this morning, we were getting ready to go to his yearly support plan meeting.  Again, he was sleepy and frustrated, and dreading this meeting.  It helped that we meet at Carlos O’Kelly’s and get to eat out, but Aaron still does NOT like meetings.  He wonders if he can stay at Paradigm, can he stay at home, and all sorts of other concerns.  I felt bad that he was scared so I assured him that things are staying the same for now, but still he was on protective mode.

“Mom, I’m telling them that you and Dad are starving me!” he declared, threatening to tell them about the locked away snacks.

Again, I didn’t react and told him he had every right to do just that.  But at the meeting, as he chomped down salad and chicken fingers and French fries, he was happy and loud and talked away at everything except his starvation.

We’ve been very weary lately, honestly.  I don’t know if his mood swings are because of medicine side effects…because of strong low fronts moving through this week…because of seizures last week…because of who knows what??

As we signed papers today, I laughed at Aaron’s signature.  This is his very favorite way to sign his name.

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Aaron has such a very hard time playing by our rules…the societal rules that dictate how we talk to others and respect others and give and receive love.  Try as we might, we cannot get him to tell us why he’s unhappy…at least not if his emotions are coming from someplace other than the fact that his snacks are locked away or he can’t stay home on his computer all day.

Aaron can convey plenty of facts.  What he can’t convey easily are his emotions…his deep-seated reasons for his angry actions.

Gary and I know this about Aaron, but sometimes it’s hard to remember it in the heat of battle.  That’s when we need to back away…take a deep breath…lean on each other and God…and remember one more thing.

Aaron Moore is cool.

He’s cool when he tries to sneak another notebook in to Paradigm to give away, knowing he’s not allowed to do that.

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He’s cool when he leans against my legs after he’s been so angry.

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He’s cool when he’s trying to feed an ant on the table at a restaurant.

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He’s cool when he’s giving and sharing.

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He’s cool when he’s “drying the bubbles off,” as he says.

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He’s cool when he’s playing a trick.

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He’s cool when he says, “MOM!!” at the grocery store and laughs and laughs at my reaction to him holding my LEAST favorite creature!!

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And in so many other ways, our unique Aaron is very cool, even when he makes me lose mine.

Let me remember that, Lord, in the heat of the moment.

Let me remember that you crafted and created Aaron’s coolness.

Aaron Moore IS cool!

 

A Girlfriend

Tears stung my eyes one night last week as I listened to Aaron suddenly tell me about how much he loved his friend, N.  Oh, he’s talked about N for a long time.  Sometimes she’s his good friend…sometimes she’s his antagonist.  She is a fellow client at Paradigm, Aaron’s day program, and they have known each other for years.

Aaron’s developmental delays due to his autism and seizures have prohibited him from having some of the normal joys of life that our other two children have enjoyed.  He’s not able to drive.  Holding down a job would be very difficult for him.  Responsibilities that they have assumed as they have become independent have not been possible for Aaron.

Aaron has always had a pretty simple view of life.  He’s never seemed to really mind not moving on in life as Andrea and Andrew have.  It’s actually a blessing that he doesn’t have those desires.  He’s very happy to live as he does.

Yet when Andrea and Kyle started dating, we saw another side of Aaron beginning to show.  It was a combination of jealousy over Kyle’s relationship with Andrea, whom he dearly loves, and resentment.  But was there resentment over Kyle taking Andrea away?  Or resentment over Andrea and Kyle having something that he did not have?

Two years ago, Aaron went with Gary and me to see Andrea in Houston.  This trip had the different dynamic of Kyle now being in the family picture.  He and Andrea were not engaged yet, but we all knew that they would be someday.

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On one hot Texas afternoon, Kyle was showing us around Galveston.  We walked in the historic district, going into quaint shops and enjoying the sights before heading to dinner and the beach.

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Aaron, however, was in a very foul mood.  And when Aaron is in a foul mood, no one is in a good mood.

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Aaron didn’t want ice cream.  Aaron didn’t want candy.

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Aaron didn’t want to look at old architecture.

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Aaron didn’t want to have his picture taken.

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It was miserable.  WE were miserable!  He kept saying, “I just want to go out to eat and go to that lake!”  A really big lake, by the way.

In the parking garage, as we walked to our car, Aaron finally had enough.  With pent-up anger, as I tried to walk with him and cheer him up, he blurted out:  “Well, Andrea and Kyle are going to get married!!  Why can’t I get married??!!”

There it was…a glimpse into Aaron’s feelings and into his heart.  And there I was, with no words to console him.  What could I even have said to make him feel better?

In the following months, Aaron brought up the girlfriend and marriage subject more and more often.  He was putting two and two together, and there were some uncomfortable moments.

“Mom,” he said one day, “I want a girlfriend.”

“Oh, Aaron,” I answered.  “I understand that, but you don’t really need a girlfriend.  Just be happy to be friends.”

“But you were a girlfriend to Dad, right?” he asked.

Oh dear!  Busted!!

“Well, yes, I was,” I uncomfortably answered.

“What was it like?” he continued.

“Ummmm,” I struggled, “it was special.”

“I want to be special,” he said.

My heart!!  What does a parent do with this side of their special-needs child?!  No doctor or medicine or therapy can fill the normal void of my son wanting to be loved in the way that I had just described as being special!

As Andrea and Kyle became engaged and we planned their wedding, Aaron was resentful.  He didn’t even try to hide it.  And on the day that we told him about their engagement, he went outside and did his thing in the mulch, alone, as he crumbled mulch and I watched him out the window…my heart crumbling, as well.

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Gary and I have tried to be honest with him as he’s asked more than once about why he can’t get married.  I mean, could he marry one day?  But then we’re reminded of the very answers we give to Aaron when he brings up the subject.

We tell him he needs a job…that he would need to live somewhere else with his wife…be able to pay his bills…that there would be her medical issues and his medical issues…

And we feel mean to tell him these things.

Yet that IS the reality of Aaron’s life.  Reality can’t be sugar coated in an effort to make Aaron feel better.

Or in an effort to make us feel better, as well.  Letting Aaron marry would bring to our doorstep a host of issues that we do not even want to think about.

On that night last week, after Aaron and I had watched a rather emotional episode of the series we’re watching, instead of hurrying out of his chair he instead started talking.

“Mom,” he began.  “I love N, and she says she loves me.  When I come in Paradigm, she says hi to me.  She wants me to sit beside her, and she holds my hand.  That makes me happy.  It makes me feel good.”

The sincerity in his voice and his sudden cascade of words stopped me from moving off the couch.  His rushing words and his emotion also stopped me from brushing off what he was saying.  Instead, I sat there and looked at him as he talked.  He continued.

“Ever since first grade,” he said, “I wanted a girlfriend.  No one ever wanted to be my girlfriend until N.”

It was hard not to smile, and also hard not to cry.  In fact, my eyes did fill with tears, which Aaron really dislikes.

“Are you crying?!” he asked.  But when I told him I was, a little, he didn’t even get upset.  He just kept talking about N…about how he wanted her to be his girlfriend…and how no one else wanted to be her friend.

His relationship with N is complicated.  She is complicated and Aaron is complicated, and there are many issues.  N uses Aaron, trying to take his money and his food and all his time.  She gets angry, and sometimes makes Aaron cry.  Yet Aaron defends her most of the time, particularly when she talks him into giving her his money.

Aaron reminded me of the day that I had recently called Barb about N taking some of his money.  Aaron gets very angry when I do that.  He said the most amazing thing that night.

“Mom, when you called Barb about N taking my money, you messed up the boyfriend/girlfriend option!”

Where on earth did he come up with that?!  And how on earth did I not break down laughing?!

A few weeks ago, as I drove Aaron to Paradigm, this is what he said:

“Mom, N asked me to marry her.  On accident, I put it too far and I said yes!”

Again, I was laughing inside but knew that on the outside Aaron needed my understanding.  Thankfully, his “putting it too far” did not end up in a commitment of any kind.  But sometimes, in his heart, I know he wants to have this taste of a normal life even though he has no idea at all about what it would mean.

But Gary and I know what it would mean, and we know it can’t happen.  It makes me a little sadder for Aaron when he does talk about it.  Yet I think of the reality of what would happen if we said yes to this grand idea, and I’m jerked back to THAT reality and know that it can’t be a part of Aaron’s life.

God continues to give us grace and to soothe my heart when I hurt for Aaron.  And I’m very thankful that He gives us the strength to not “put it too far,” and say yes!!

I’m thankful, too, that God isn’t too far from us in any of this.  He knows and understands,  and His promise to be near the brokenhearted is always true!

The Dandelion

I’m a little…actually, a lot…fired up right now because of an article I just read.  Apparently, a special-needs teacher in Indiana decided on award night to present one of her male students with the Most Annoying Male award.  Yes, you read that correctly.  She did this in front of all the other students and their parents, including the parents of this young boy.

OK.  You have the background now for why I’m upset. To publicly humiliate this boy and his parents is inexcusable.  To do it in this fashion is heartless.  And the fact that this woman actually teaches special-needs students is beyond belief.

Yesterday evening, after we ate supper and as I was cleaning the kitchen, I looked over at our kitchen table.  The evening sun was shining in the windows beside our table, highlighting the beautiful flowers that Gary brought to me last week for our anniversary.  The flowers still look so gorgeous, so bright and cheerful, that I just had to snap a picture.

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When I look at those pretty flowers, I’m reminded of Gary’s love for me over all these years, and how he showed it on this particular occasion.  Gary shows his love for me every day in so many ways, but he knew that these flowers would be a very special way to demonstrate his love on our special #40 anniversary.

Later, I went out to the garage to talk to Gary while he whittled on a walking-stick he’s finishing.  It wasn’t long, though, before we heard the familiar sound of Aaron’s fast walking headed in our direction through the house.  He loudly opened the door and barreled into the garage, primed to talk about whatever was on his mind.  So much for our quiet conversation, Gary and I both said without speaking as we looked at each other.

I became occupied with some things that needed my attention,  soon realizing that Aaron had disappeared but had not gone back into the house.  I stepped out on the driveway and sure enough saw Aaron at our neighbor’s house.  He was standing at their pool talking to them as they were, I’m sure, trying to have a few moments of conversation without interruption from either of their young boys.  After calling to him a few times, Aaron turned to come home, and I turned back into our garage.

A few seconds later, Aaron rounded the corner and ran excitedly into the garage.  “Here, Mom!!!” he exclaimed.  Into my face he thrust his gift…a decrepit looking and closed-up Dandelion.

Aaron was all smiles as he awaited my reaction, holding this unimpressive Dandelion under my nose.  Honestly, my first initial impulse was to say something like this: “Oh Aaron, how sweet, but I don’t need a Dandelion in the house.”

Yet something stopped me as I saw Aaron’s huge smile and looked at how his eyes were sparkling with delight.  So, I took the little Dandelion and instead thanked Aaron.  When I did, Aaron spontaneously put his arm around me and gave me the sweetest side hug!  If you know Aaron, you know how unusual this was!  I hugged him back, a little awkwardly because I had been turning to walk away and because I was so surprised at his hug.

Aaron chuckled, full of satisfaction at his good deed.  I told him to come with me and we would put this special flower in some water.  This made Aaron very happy!  When I put the browning and unimpressive Dandelion in a small plastic glass of water, you would have thought I had put a gorgeous bouquet in a crystal vase.  Aaron grinned from ear to ear as he bounded back outside to talk some more to Gary.

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I decided to put Aaron’s little gift beside Gary’s big gift, which only accentuated the smallness of this meager Dandelion.  Yet, in no way was Aaron’s intent any smaller than Gary’s.  Both were full of love, expressed in two different and yet two very sweet ways.

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This is Aaron.  He does, in the midst of his often perplexing and annoying ways, show us his love.  He shows love on his terms and in his times, not usually on ours.  But in allowing him this freedom we are also allowing him to be expressive in manners that suit him and that come from deep in his heart.  It’s beautiful to see!

You notice I did say that Aaron can be annoying.  Aren’t all of our children, at times?  Yet never would I publicly shame Aaron as this teacher did to her student.  Our special children often find it impossible to function as expected in our complex world, but they are rarely setting out to purposely be annoying.  It’s up to us as parents and as teachers to understand this and to respond appropriately.

I don’t always understand, and I don’t always respond as I should.  Like last night as I said goodnight to Aaron, why did I choose that time to mention his need of improving his showering skills?  It took him a while to wind down from that, just when I am most tired, but what did I expect?  There are times I need a lip zipper, for real!!

This morning I saw that Aaron’s closed and rather ugly Dandelion had opened fully and was a bright yellow.  I showed Aaron, and he smiled a smile that was as bright as his Dandelion gift.

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Our special children…ALL of our children…will open and thrive if given the opportunity.  A little water and some light totally changed my little Dandelion.  He still looked small beside the larger vase of flowers, but he has quite a large place in my heart.

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Just like our Aaron.  If given the chance, he can shine along with the biggest and the best.  It’s just going to be in HIS way, and I need to know that this is a good thing.  A very good thing!

I also need to remember to point out to Aaron his own progress and accomplishments.  He loves hearing affirmation, just like he loved seeing his Dandelion gift sitting there looking brand new.  It reminded him that he had made a very good choice!

I pray that Indiana special-needs teacher will understand this someday, too.  And I especially pray that her student will be nurtured and will open up to his full potential…and that someone certainly threw away that awful “award!”

 

The Turn Signal

A few months ago, as I headed out of our neighborhood taking Aaron to his day group, I noticed that my right turn signal didn’t sound right.  The second time that I pushed up on the turn signal lever and heard that very fast clicking sound, I knew what it was.  Either my front or my rear turn signal was out.  I drove across town, dropped Aaron off, and then before leaving I got out of the van to check the turn signals.  Sure enough, the rear signal wasn’t working.

Bummer!  Of all the days to have this happen, it had to be on the day I had several errands to run instead of just going straight home.  One of the places I had to go was McConnell Air Base…and they are super picky there about things like the speed limit and vehicles working correctly.  Imagine that!

I drove under the speed limit the entire time I was on base and was thankful that I only had to use my right turn signal once.  But I was sure that this one time would be the one time that an MP was behind me!

I had also promised Aaron that I would take him to one of his favorite stores, Big Lots, after I picked him up.  Our local Big Lots had closed, so I had to once again do some extra driving in my defective van.  I never knew how many times I needed that right turn signal until it wasn’t working!  And I decided a possible conversation with a police officer was a better choice than the conversation I would need to have with Aaron if I told him our Big Lots trip was cancelled.

I wanted to paste a sign in the rear van window that explained my situation…to let others know that I knew my light wasn’t working…to tell them that I really DO know how to use a turn signal.  How many times have I said that very thing out loud about other drivers who don’t use their turn signals?  I was feeling a little guilty, wondering how many of their signals were broken, too.

Sometimes we just can’t see and don’t understand what a person is going through, do we?  We look at the outside and think things look fine, but the inner workings of a person are far more complex than what we outwardly see.  This fact is very true for every single one of us but is very VERY true for our Aaron.

To be clear, I am not saying that Aaron is broken.  What I AM saying is that Aaron’s responses and handling of life situations can manifest outward behaviors that are extremely frustrating for others around him to understand and handle correctly.  His brain is wired way differently than typical people, and so his turn signal often doesn’t let anyone around him know the direction he is getting ready to take until he’s turned that corner and there’s no going back.

Karen Williams wrote in a paper years ago concerning students with autism:  “Rage reactions/temper outbursts are common in response to stress/frustration.  Children with Asperger’s Syndrome rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dictate they should be.  Interacting with people and coping with the ordinary demands of everyday life take continual Herculean effort.”

Williams was writing about young students, but this same description also applies to adults with autism…to our adult with autism…our Aaron – who definitely flipped his turn signal on last week at the theater.

First, the set-up:  Aaron had been home for three days this past week due to our severe weather chances and flooding concerns.  Aaron loves being at home where he is totally relaxed and able to do all the things he enjoys.  But when he must re-enter normal life, like going back to his day group at Paradigm, it is often a huge struggle for him.  And therefore, for everyone around him.

On Friday, Aaron was reluctant to go to Paradigm.  Even the thought of Friday movie day didn’t really help him.  He decided not to go to the theater, despite having his nine dollars in his wallet for popcorn and the prospect of a fun movie to see.  I encouraged him to go to the theater, and his staff encouraged him to go after texting with me.  But no one MADE him go.  However, that is not at all how Aaron saw it.  His anger was getting deeper.

Second, the incident(s):  At the theater, Aaron took a behavioral turn that everyone could see despite his lack of a working signal.  I don’t even know all that happened there, and don’t really want to know.  I believe, though, that his day group staff was told by theater staff that Aaron needed to leave.  No matter what I know about Aaron and what I understand about his autistic outbursts, these times test my love and my patience.  I’m a normal mom who is terribly embarrassed when Aaron blows it, especially in public.

I wonder what all he did there.  Who saw him?  Did anyone we know see and hear our son acting that way?  Now what?

Third, the repercussions:  When I went to pick Aaron up at the theater, he was sitting in the Paradigm van.  Aaron emerged from the van with a very unhappy face, and I knew something not-so-good had happened.  Athena, his kind staff, gave me a very brief update, but Aaron’s still-angry mood told us it was not the time to discuss it.

He and I talked about it on the way to Wal-Mart, and again inside the store.  But Aaron was saturated with frustration and guilt so I knew I could only say so much before I would push him over the edge again.  Two repercussions that initially happen with Aaron, when that angry turn he took is over, are regret and guilt.  He truly wishes that he hadn’t gone so far in his anger.

Aaron was totally compliant in Wal-Mart, overly so.  This is his way of making up for his angry actions.  At the self-checkout counter, Aaron was super helpful.  He held my coupons, helped unload the cart, and couldn’t say thank-you enough to the clerk who assisted us.

“Am I being good, Mom?”  he asked at one point.  “Am I helping?”  And he looked me square in the eyes, waiting for my response and my affirmation.  It would have been so easy for me to say, “Yes, Aaron, but I sure do wish you would have been this nice in the theater!”

But when I saw his eyes, tired from the bad day and hopeful that he was finally doing something good, I nearly cried.  Right there in the check-out lane at Wal-Mart with holiday shoppers all around me, I wanted to burst into tears for Aaron and for me.  For Aaron, because I fully know that he can’t repair his broken turn signal in time to avoid that wrong turn.  And for me, because I love him and I want to “fix” him, but I really can’t.

I turned away quickly and finished paying.  Aaron helped gather up the bags out of the cart and we walked to the van, happy that the rain had stopped.  When we got home, another storm was coming.  Aaron was concerned about the lightning while he was on his computer, so he wanted me to be sure and tell him if he needed to shut the computer off.

“Mom,” he instructed, “come up and tell me, or call to me from downstairs, OK?”

He waited for me to respond.

“I’m giving you two decisions,” he finished.

I always smile at how he says that…two decisions instead of two choices.

But I thought of how true his saying was at that time.  I did have two decisions regarding more than lightning and his computer.  I also had two decisions about that turn signal issue of Aaron’s.  I could be angry and berate him, or I could be loving and instructive at the same time.  The decision is mine to make, despite how difficult it sometimes is.  It’s easier to lash out at Aaron, honestly, but harder to be loving and patient with instruction thrown in.  Yet the first decision only brings more anger and hurt.  The second decision, hopefully, helps to fix Aaron’s hurting heart and show him a better way to handle his anger.

Back to my van’s turn signal – Gary was able to pick up the correct part and repair it that evening.  Aaron was beside him the entire time, at one point using that moment to show Gary some scrapes on his legs.  Aaron is so oblivious about how he looks in public, and at times it’s really funny.

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But at other times, like the theater incident, it’s anything BUT funny.  How we wish that we could install the part that would make Aaron’s turn signal work correctly and avoid all the damage that’s done when it doesn’t!

How many times do I wish I could paste a sign on Aaron’s back that explains his behaviors?!

I can’t, though.  We just keep driving down this road with Aaron, trusting that some people understand and not worrying about the ones who don’t.  Easier said than done!  But God does give grace and He gives us wisdom to make that right decision…and He redirects us when we don’t!

Aaron’s turns aren’t easy when his signal’s messed up, but we’re there to repair the damage and pray it works better at the next turn.

And sometimes hang on for dear life!

 

Included

Last night, I peeked into Aaron’s room and saw this:

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THIS…is Aaron finishing The Meg movie by watching the credits.  He keeps his eyes glued to the screen as if he is looking at the most pivotal part of the movie and wouldn’t dare look away.  He knew that I was getting ready to go downstairs so that he and I could watch our nightly show.

“Mom, I’m almost done!” he said.  “It won’t be long!”

To Aaron, the credits are a part of the movie.  He will not end a movie when most of us say that a movie is over.  No.  The movie is over only when the credits end.

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If Aaron starts something, he will finish it in his Aaron way.

Aaron has started something else recently.  It’s not the first time we’ve seen him start this thing, but it’s the most recent.  It’s not something that we can touch or see, but it’s something that we definitely hear.  And feel…because Aaron feels it deeply.

I can explain it by telling what happened a few weeks ago.  We were eating breakfast on a Saturday morning on our patio.  Gary prayed before we ate.  One thing he did was to ask God to take care of us, and also to bless and take care of Andrea and Kyle, and Andrew.  He named them, but for us three sitting at the table, Gary just said “us.”

No big deal, right?  Wrong.

Aaron’s head popped up after the prayer and immediately he said, “You don’t also want to love ME?!”

Gary NOT using Aaron’s name did NOT sit well with Aaron.

We talked about why Gary called us “us,” and explained that it had not one thing to do with not loving Aaron.  Aaron finally hushed about it, but we could tell he wasn’t totally convinced.

Like I said, once Aaron starts something, he will finish it…sometimes weeks later.  And even if we think it’s finished, one more little part of it may emerge at any moment.

Aaron has a very difficult time expressing his deep feelings in conversation.  He also has a blind spot when it comes to seeing how he is affecting others at times.  But to be so unaware of other’s reactions, he sure can see a difference sometimes in how we talk to him compared to how we talk to our other children.

For instance, when I’m on the phone with Andrea, Aaron will almost always stand beside me at some point and want to talk to her.  He waits and waits until I let him have the phone, or turn it on speaker, and then he goes on and on and on about his latest movie or game.  He doesn’t ask her about her life but gets his satisfaction by doing all the talking.  Andrea responds so well, and Aaron loves it.

But Aaron has also observed that the way I talk to Andrea, and she talks to me, is different from how we talk to him.  He doesn’t get why it’s that way, and he really isn’t able to change it, but he does know that our interactions with each other are not what they’re like with him.

This has been bothering him lately, and he’s been comparing himself to her or to Andrew.  Therefore, he strives for attention…and Gary and I strive to give him a share of our attention while we are getting more and more tired of the striving.

The other night, Gary and I snuck outside and sat on our front porch.  Just the two of us.  Talking.  Uninterrupted.

But then we heard the door in the garage close.  Aaron popped around the corner.  We were caught!

There Aaron stood, talking and talking and talking.  Talking about Terminators and Trandoshians and clones from the Delta squad and visor modes…

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Our brains freeze and our minds wander when Aaron talks non-stop.  Then he asks a question, waiting for an answer, and we do a mental hustle trying to remember what on earth he was talking about.  It’s a scenario repeated so often, and one that Aaron so often interprets as a lack of interest on our part.

A couple nights ago, Andrea texted during supper and sent us a picture of what is growing on the mystery plant in their yard.  Grapes!  It was fun to see the picture as we’ve all wondered if the plant was a grapevine.  Gary and I were happy!

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Then yesterday, she sent a picture of their first onion harvest from their backyard garden.  And again, we were happy.

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But Aaron was not happy.  Once again, he sensed more enthusiasm from us about Andrea’s life than his.  And once again we were doing damage control for much of the evening.  UGH!!

This morning, Aaron was up and on his computer at 4:30.  That’s 4:30 A.M!!!  I got him to go back to bed, but he was up again not long after.  And as I talked to him, he mentioned Andrea and her things and he hoped she wouldn’t call.

I sighed.  But not where he could hear me.  He heard me sigh once when I was on the verge of anger.

“Don’t breathe madly!!” he commanded me.

I went to the kitchen this morning, and then decided to do the hard thing that I didn’t feel like doing.  I walked back upstairs to Aaron, sitting at his computer.

“Hey, Aaron,” I said.  “Do you want some eggs and bacon?”

He did.  So later, there we were, sitting at our kitchen table eating eggs and bacon.  I wanted to be having my quiet time and talking to God, but here I was having a not-so-quiet time and talking to Aaron.

But before I prayed over our food, Aaron blew me away by what he said.

“I just want to be included,” he said.

That was truly amazing!  And as we ate, I was able to assure him that he IS included in our lives.  Yet no number of words coming from my mouth gave him assurance of that fact as much as my listening to HIS words coming from his mouth.

Really listening.  Asking questions.  Looking at his Ironman Guide Book that he ran and got from his room.

The flying fortress.  AIM.  Girl face statues.  Titanium Man.  The frozen ship.  The brain controls that make you dizzy.  And oh, SO much more!

Then I got a text on my phone.

“Better not be Andrea,” Aaron muttered.  “Like her grapes and onions!”

I wanted to laugh but knew better.  And I know better than to think that this inclusion and being loved business is settled.  I know it isn’t. But I was very touched by how Aaron calmed and responded when he knew he had not only my full attention, but my full interest.

The credits on this part of Aaron’s life movie are still rolling, and we must show interest…and also guide him to know when it’s time for a break.

And that a break doesn’t mean exclusion!

God, give us and so many other parents like us the grace to love ALL our children just the same, even when the expression of that love is anything but the same.

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