What Will I Wear?

Aaron notices much more than we sometimes give him credit for.  I love how he will point something out to us, often something that we never paid attention to at all, and then offer his comments on it…..of course……whether we want to hear them or not.  We usually DO want to hear what Aaron has to say, but trust me – there are times when we do NOT want to hear what comes out of Aaron’s mouth. 

Aaron rarely gives any thought to whether we want to hear his observations or not.  His insights may be new, or they may be ones that we have heard over and over and over and over…..and over……again.  It doesn’t matter one whit to Aaron.  He would probably implode if he didn’t talk, so talk he does……and we listen, regardless.

He shares things with perfect strangers, too.  I took Aaron to Wal-Mart with me after I picked him up from Paradigm on Friday.  Aaron was happy that I had found a soft fuzzy blanket on sale and that I had put it in our cart. 

“Is it for ME?” he hopefully asked.  But when I told him it was for our aging Great Dane, Jackson, Aaron was not at all disappointed.  He loves Jackson. 

Aaron sat on the bench near the register as I checked out.  I loved the look on his face as I looked at him and smiled.  Inside I was hoping not to hear him blessing us all with his ear splitting loud clapping…..or a silly ‘meow’……..or a fox whistle……or a very embarrassing farting noise. 

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But Aaron didn’t stay on the bench for very long.  No.  He saw the cashier ring up the soft fuzzy blanket, which reminded him that he had something important to share with her.  He didn’t care one bit that he didn’t know our nice Wal-Mart associate.  He did know, though, that she needed to know something.

So he got up from the bench and purposefully marched over to where she and I were finishing my transaction.  He pointed to the soft fuzzy blanket.

“That’s for our dog.  He’s nine years old and he has weakening in his muscles.”

She thought that was so nice to be buying our dog such a nice soft fuzzy blanket.  She and I were starting to have a dog conversation when we heard Aaron again.

“LOOK!!” he blurted out.  And there he stood, lifting up his right arm and showing the poor unsuspecting soul his yucky yellow and purple bruise on his arm. 

“Aaron…..” I started, but he barreled right over me.

“My desk chair fell on top of me when I was reaching for apples and peanut butter, and I got a bruise!!” he explained. 

She showed him his desired amount of shock and sympathy while I tried to hurry up my payment.  Knowing smiles were exchanged between us as I readied to leave.  Well, knowing smiles shared quickly between her and me. Aaron was already off in search of his next victim, so I had to run.

So back to what Aaron notices, and then shares all too fully with us…..or anyone else who is fortunate enough to be nearby.

On Thursday I wore this blouse.

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Aaron came into the kitchen, looked at me with his head tilted to the side, and then offered his opinion.

“That shirt looks like it should be colored,” he commented.

This forced me to look with new eyes at my shirt. 

“Aaron,” I asked.  “Does this remind you of the adult coloring books that you and I have seen?”

“YES!!!” he replied, so excited that I had gotten what he was trying to convey.  “It looks like it should be colored!”

“Do you like this shirt?” I asked.  And he told me that he did like my coloring shirt, very much. 

So on that day I was fun.

The next day I wore this blouse. 

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Aaron had come in the bedroom and seen me wearing it, before I added a sweater.

“WOW!!” he said, in awe.  “You look like a princess!”

I just laughed.  A princess?  But there was something about this blouse that he loved, and so he saw me as someone very special as I wore it. 

On Sunday, as I was getting ready for church, Aaron came in the bathroom and saw me wearing this blouse.

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“Ewwww,” he said in a measure of disgust.

“What’s wrong?” I asked him.

“What you have on,” he answered. 

“Don’t you like it?” I asked.

“NO!” he replied.  “It’s ugly.”

There was something about it that wasn’t fun like my coloring blouse and wasn’t special like my princess blouse.  This blouse, to Aaron, was ugly……ugly enough to him that he reacted instantly to it.  He wasn’t trying to be mean.  He was just being honest.  The design; the colors that he saw since he’s color blind, perhaps; or maybe the style – whatever it was, he didn’t like it one bit.

I’ve thought about all this since our morning yesterday.  Aaron was not one bit happy to be going back to Paradigm after enjoying his weekend.  I’ve learned to just let him work through it, to not force the issue, but to let him make the decision.  He knows the consequences of going and of not going, so it’s good to let him be the one to choose. 

But yesterday, on this Monday, he was extra unhappy and extra grouchy.  Downright hateful a couple times. 

“I want a break!!” he angrily told me.

“You just had a break,” I told him back, but not angrily.  I know better.

“When was my break?!” he wanted to know.

“Saturday and Sunday,” I answered as I fixed my hair.

“Don’t say that Saturday and Sunday were my break!!” he told me.

“OK,” I said.

So I’m fairly certain he came in the bathroom a dozen times, each time saying with more and more anger, “Don’t say that Saturday and Sunday were my break!!”

He continued on down his anger path.  I didn’t react……I breathed deeply……I prayed…..and I looked forward to Aaron making up his angry mind about what he wanted to do. 

He finally came in the bathroom, bent over while he rubbed his hands together, and said, “I don’t love you anymore!!!!”

Then he was spent.  I was, too.  He walked away, calmed down, went to Paradigm while he happily listened to music, and the storm passed. 

What I wear, in a sense……what I display to Aaron when he is so angry…..makes a huge difference in the outcome.  It’s much like my blouses that caused a reaction in Aaron.  If I show anger when he is angry, the result is explosive and nothing is accomplished.  If I show patience, then he sees that his anger isn’t accomplishing what he hoped it would.  If I ignore him totally for awhile, he becomes uncomfortable and realizes that he has crossed a line. 

I can choose what I wear during these episodes just as much as I chose those three different blouses on three different days.  Will I be fun, or special, or ugly? Every situation with Aaron is different, too, so I need wisdom…..which is a big reason that I pray.

Oh, I get upset, too.  I mutter under my breath……think not-so-kind thoughts……and if Gary’s here, he is at times my sounding board, as I am his. 

But still, what I wear in front of Aaron is so important.  Above all, I must wear unconditional love.  It’s hard sometimes to do that, especially when he tells me he doesn’t love me anymore.  Thankfully, that doesn’t happen often, but when he does go that far, I struggle.

When I picked Aaron up from Paradigm that afternoon, he acted as if nothing had happened between us at all.  And last night, as we watched Wheel of Fortune, Aaron starting rubbing his hands together wildly.

“MOM??!!” he loudly said, “I LOVE YOU!!”

Which is Aaron’s way of saying that he is sorry, and that he does love me for real.

I slipped on some forgiveness right then.

“I love you, too, Aaron.”

It felt very nice, maybe like the princess blouse.  And fun, like the coloring blouse. 

I’m thankful the ugly was gone, at least for now. 

Lessons From the Garden Shoes

We had finally received some much needed rain here in this very dry and hot Kansas summer.  It was more than just a few disappointing drops, too.  We actually had enough rain to drip off the leaves on the trees and in our flower and vegetable gardens.  Enough rain that I had a reprieve from my watering duties and could let nature do her work for a few days.  Enough to more than just settle the dust – we actually had some mud amongst the vegetables.  The cooler temperature, the damp smell of the earth, and the grass greening up a little were all very welcome to every two and four legged creature around as well as to every struggling plant. 

I allowed a couple days to go by after the rains before I walked out to the vegetable garden to check on things there.  Sure enough, the rain had done her good work.  I stood there looking at the cucumbers, squash, and okra that needed to be picked.  Then I looked at the soil, still dark and wet from the recent moisture.  I slipped on my garden shoes and decided to give it a try.  Stepping over the wire fence, I gingerly put my weight down on the soil as I stood inside the garden.  Not too bad, I thought, and so I walked carefully over to the cucumbers to pick the ones that were plump and ripe.  Next, the squash – not many there but a few.  Time for the okra, in the very back of the garden.  As I walked I noticed that the garden was muddier than I thought.  “Well, I’m already in here,” I reasoned, and so I continued on.  It can’t be that bad.  But with each step I noticed that my shoes were feeling heavier and heavier with the buildup of mud, and I could see my footprints that I was leaving behind in the soft soil.  I told myself that I would get out soon, after I picked the okra, and so I trudged on through the mud.  When I finally stepped back out onto the grass, the bottoms of my shoes were covered in mud that needed to be cleaned off.  There was no mistaking where I had been, and the mark that my decision left on my shoes was messy and ugly indeed. 

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Our lives are full of decisions in so many areas.  Many times the way that we should go is very clear and other times we’re just not sure.  Whether it’s an actual place or event, or if it’s an attitude of the heart, our prayer should be as David’s was in Psalm 143:8 when he said, “……teach me the way in which I should walk.” 

Before we realize the danger, we can easily step over that fence and venture out into the messy areas of life or thoughts that will only mire us down.  What may have even appeared to be right or to be justified soon turns into a trap that weighs us down.  Wrong friendships or relationships; ungodly entertainments and activities; carnal or impure thoughts – all will leave a residue in our lives that builds up until finally we are having to bear the consequences of our decisions. Our friends and family can without doubt be able to tell where we have been because the effects are so evident in our lives and in our attitudes.

Thankfully, God will clean us up as we ask for His forgiveness but often we will still bear the messy marks of our decisions.  So the next time we stand at that fence in our lives and have some decisions to make, may we say with the prophet in Hosea 14:9:  “…….for the ways of the Lord are right and the righteous will walk in them.”  Show us Your ways as we seek Your face, Lord, and keep us from venturing out into the muddy messes that are all around us.

 

A Sometimes Wonderful World

Aaron was with me all day on Monday because he had a doctor appointment in the morning.  Afterwards, we swung by the eye doctor to have his glasses adjusted; went to Taco Bell for lunch, which was the real reason that Aaron was happy to be with me; and then to Wal-Mart, his second real reason for being happy.  I experienced quite a few autism moments, too many to remember them all……for after all, Aaron’s whole being is influenced by autism.  So is mine.

There was the ride in the van across town, and Aaron’s excitement about listening to the CD he had chosen.  Pop Memories of the 60’s was quickly inserted in the player, and then Aaron’s instruction as he held his hand up, palm facing outward:  “Don’t talk.  I want to listen to the music.” 

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The number 1 showed on the CD player, so Aaron reached down to quickly pick up the CD holder and announce in his monotone voice, “Stevie Wonder.”  He bent over again to place the CD holder back where it had been.  The song began and Aaron said, “Mom, do you like Stevie Wonder?”

Notice who’s doing all the talking.

So we listened to “My Cherie Amour” as memories of high school flooded by brain.  But I didn’t share that with Aaron because I wasn’t supposed to talk. 

Then number 2 came on the player, so Aaron bent back over to pick up the CD holder.  “Kenny Rogers and The First Edition,” he again announced.  And back down went the CD holder.

Number 3:  Pick up holder…….“Tom Jones,” Aaron flatly said…….replace holder. 

Number 4:  Pick up holder…….. “Mama Cass,” was announced……replace holder.

You get the idea.  All across town, and back across town, he never tired.  Oh, and there was this one.

Number 10:  Pick up holder……. “Lois Armstrong,” he said as sounds of “Hello, Dolly!” filled the van. 

“Ummmm, Aaron, that would be Louis.  Louis Armstrong.”

“Don’t talk, Mom!  I want to listen to the music,” said guess who?

This doctor visit was to the psychiatrist who oversees his autism care.  Oh, could I fill her ears full!  I refrained somewhat, but Aaron didn’t.  He stretched himself out on her small couch right away, uninvited to do so, legs hanging out over the end, and proceeded to talk about Mom’s upcoming trip to Houston……his upcoming trip to NC with Mom and Dad……his new Superman set of movies that we let him have for the NC trip……and Ultraman.  Among other things. 

Later, at the eye doctor, he was rather impatient as we waited.  Doctors and glasses adjustments are such a bother, especially with Taco Bell just around the corner!  Then in walked a nun, dressed in her full habit from head to toe.  I hoped that if I began tickling Aaron’s back, he would keep looking down and not see her.  Aaron is fascinated with nuns and with their unusual clothing, so I wasn’t sure what he would say.  Too bad we didn’t have a CD playing so maybe, just maybe, he would be quiet.  He did look up and he did see her, of course, standing right there at the front desk.  But as she walked into the bathroom, out of earshot, all he said was, “Mom, she’s wearing a hood!  She must work for the church.” 

I was pretty relieved when she was called back immediately.  I had no idea what to expect with both of them sitting in the waiting room together, and it wasn’t her I was worried about.

Aaron loved lunch, of course, even amid my reminders about not whistling as we waited for our food or making various other unusual noises.  And then before we ever stood up to leave came my reminder to him about stretching.  Aaron makes quite a production of stretching when we get up to leave a restaurant, his back arched and his stomach stuck out and his amazing stretching noise.  So I’ve learned to remind him before we even stand up that he is not supposed to stretch, which I did there in Taco Bell.  He stood up, though, and did a suppressed stretch……what you might call an abridged stretch……which on Aaron still looked amazing and drew attention, I’m sure.  I’ve learned not to look at the people sitting nearby.  He just looked a little like he was puffing up and about to implode, right there near the drink machine.  Nice.

And then he saw it……the quarter that someone had dropped on the floor directly in front of the register.  He has such hawk eyes for things on the ground, unless it’s his dirty clothes in his room or his mounds of books on the floor.  I tried to stop him but it was too late.  He bent over clumsily and picked up the quarter, while the line watched him and I just stood there.  It was quite a sight, Aaron doing the old man bend.  The employee told Aaron to keep the quarter, which he gleefully pocketed, oblivious to the scene he had just created. 

Dear Aaron!  He is so unaware of how funny and unusual he is, or of how he comes across.  These autism moments, I call them, come in many various forms.  And yesterday at his day group, they weren’t so funny.  The not so funny autism moments cause anxiety and frustration for many other reasons.  He wasn’t so happy to go to Paradigm yesterday, but he went.  He ended up in tears for part of the morning, and then in the afternoon he was almost manic in his fake laughter and his “teasing.”  He calls it teasing, even though we all remind him over and over that if he’s the only one laughing……and others are hurt or angry…….it’s not teasing.

Aaron thinks it’s funny to say things to people like, “You’re fat!  You’re dumb!  You’re old!”  Or many other things as well, most of which are not funny at all.  He truly can’t seem to permanently connect what is correct to say from what he impulsively wants…..and does…..sometimes say.  This is especially true when he is frustrated about something.  Instead of addressing the issue of his frustration, he will verbally harass others, and then often regret it later.  And he does it under the guise of “teasing.”

He has a special friend who is all bent over in a wheelchair.  He has shown so much kindness to her.  I wrote once about how he waited on her at the end of the line as they walked to Quik Trip so that he could walk with her.  He loves giving her things or helping her eat.  But yesterday on the way home from Paradigm he said, “Mom, I told S that she’s ugly.  I was just teasing!” 

I was so hurt for S and I was so disappointed in Aaron.  I told him that S is a young woman who would love to be able to get up from that wheelchair, go shopping for pretty clothes and make-up, and get her hair and nails done.  I told him that she would love to go to bed at night thinking about how Aaron had told her that her hair was pretty, or that she had a pretty smile.  Instead she would go to bed that night thinking of how Aaron had said she was ugly……and she probably feels ugly every day. 

Aaron listened.  He talked about it last night at supper with Gary.  I have to say that it was hard for me to say the words I said to Aaron.  Part of me wanted to just assure him that I was sure S knew he was teasing……that it was OK, but he should do better……or that we all understood what he really meant.  But I knew that I needed to let Aaron know of the hurt he had inflicted, while it also hurt me to say the hard words to Aaron without backing down. 

Aaron had a small seizure at 5:30 this morning, but it was enough for him to wake up later with a bad headache and with bleary eyes.  I let him stay home today.  Later in the morning, he went with me to run a few errands.  On the drive back home, out of the blue, Aaron remembered.

“Mom?” he asked.  “Can we stop at Dillon’s so that I can get S a sorry card?”

My heart was so touched, and so thankful.  Aaron does know right from wrong.  He does feel bad when he’s been hurtful, even though it’s after the fact. 

So I told him that I had some cards at home.  Right after we ate lunch, before he took a nap, I got out my card box and found him a card that he liked.  It was blank inside, but not for long.  Short and sweet, he simply wrote these words, with her name underneath.

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I hope that he has learned a lesson, one that will stick and not be forgotten during his next crazy mood swing or unhappy moment. 

The last song on the 60’s CD was another one by “Lois” Armstrong – “What a Wonderful World.”  I want Aaron’s world to be wonderful, but I want him to also understand that he can quickly ruin the wonderful world of others by his words and actions. 

Likewise, he can make it right with things like his “sorry card,” and with an attempt to watch his words and his teasing.  Our job is to instruct, to understand, to be patient, to forgive…….and to be thankful for the wonderful world we share with Aaron, even on the rough days, always hoping that the rough days will be fewer and the wonderful days more frequent.     

Now, don’t talk!  Let’s listen to the music. 

Sing it, Lois!

The Coupon Box

One of Aaron’s Sunday routines is to clip the coupons that are almost always in the Sunday morning newspaper.  I’ve blogged before about his coupon cutting process.  Believe me, it’s just that……a process.  A precise process that he is 100% convinced only he can do.  I, especially, have no business cutting out coupons because I am a dismal failure at that task.  Those are Aaron’s thoughts, not mine.  Aaron cuts as closely on the dotted line as he possibly can.  He then takes any little strips of paper that are left over and he clips them over a certain trash can, snipping each strip into tiny pieces and watching them fall down to join the other tiny pieces that fill the tiny snipped pieces trash can.  It’s an art.  Other odd sized pieces of left over coupon paper fill another trash can.  The finished coupon sheets of paper, full of gaps where once were coupons, are placed neatly in a stack to Aaron’s left side.  And the finished coupons are placed in precise order in the coupon box with the red lid.  It truly is fascinating to watch him cut coupons. 

Sometimes I don’t get the coupon box with the red lid emptied and sorted before the next round of coupons appear the following Sunday.  Such was the case a few weeks ago.  Aaron had completed his coupon cutting set-up in the family room.  His three cups of coffee were waiting for him on the bench beside where he sits on the floor, along with his pillow that he sits on, his scissors, his two trash cans, and the television turned to The Animal Planet.  He came to retrieve the coupon box with the red lid, opened it, and found last week’s coupons still inside.  So without further ado, he promptly dumped the week old coupons onto the table and turned to walk into the family room and complete his coupon cutting mission.

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“Wait,” I said.  “Can’t you still keep the old coupons in the box?”

“No,” he simply answered. 

“Because you can’t mix them up, right?” I asked, knowing full well the answer.

“Yeah,” he again simply answered as he sat on his pillow and started his mission.

Yeah is right.  Aaron can’t stand to mix the old coupons with the new coupons.  He does it on occasion, but not often.  So he clipped that day’s coupons and later I found the coupon box with the red lid on the kitchen table…..every coupon placed in just the right place and in the right order.  Aaron’s way, which to him is the only right way.

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Aaron’s life, and living with Aaron, is so much like his coupon clipping process.  He wants everything in its place…….the details of his life in a certain order.  This goes here…..that goes there…..and if I’m done with it or it’s old or messed up, out of place or frustrating, I just dump it and we start over.  Neat and tidy, with Aaron in control of the set-up and the tools and the timing and the process.  Except life’s not like that, not for Aaron and not for any of us.  You and I can adapt to these changes for the most part pretty easily, but not so Aaron.  Even the simplest change, the most minute little snag in an otherwise orderly process, can easily put Aaron over the edge.

Gary and I just returned from a short trip to Topeka, where we watched Andrew work on his NHRA race team.  Aaron knew that his two caregivers were coming to take care of him.  He was excited for us to leave, as he always is, because our leaving means more eating out and more movies and hopefully less bossiness from those in charge and more of him pulling the wool over unsuspecting eyes…..so he hopes. 

“I can’t wait for you to leave!” he said on Thursday as I was getting ready to go.  “NO parents!!” he added as he rubbed his hands together and laughed loudly.  He is at least very honest.

“What time are you leaving?” he asked, though he had been told how many times before? 

“We’re leaving at 3:00,” I answered.

“Can’t you leave early?” he asked.  “Like 2:59?”

He was completely serious about that.  So I smiled when I hugged him goodbye later, and told him that it was 2:52.  He just nodded his head and went on his way, and I stifled my laughter until Gary and I drove down the road.

Aaron calls repeatedly while Gary and I are away from home.  Every day, several times a day, he calls.  So much for his “NO parents!” comment!   Therefore, it was no surprise on Monday morning when he called, and also no surprise to me that he was most unhappy.  After his busy weekend, and after NO parents, he was ready to settle into his normal……but not ready to go to his day group.  He wanted to stay at home, which is common for him, and he wanted to be there when we arrived.  I always question what to do in that case.  Let him just stay home…..but is that giving in?  Make him go…..and maybe pay the consequences of that decision.  Mainly, his caregiver and day group have to pay the price of Aaron’s grouchiness.

As Aaron and I talked on the phone and he finally agreed, unhappily, to go to Paradigm, he asked me if I would pick him up early at the end of the day.  I said that I would. 

“Mom!” he said.  “I mean to pick me up before 4:00.  I want you to pick me up at 3:59!”

Again, he was entirely serious.  “3:59?” I asked him.

“Yes!” he answered.  “Don’t wait until 4:00!  Will you pick me up at 3:59?” 

So I agreed to pick him up at 3:59 and he went reluctantly to Paradigm.  However, he had a miserable day.  The other clients had a miserable day.  The staff had a miserable day.  Thankfully they are so understanding and forgiving.

It was around 1:30 when my phone rang.  I heard Aaron on the other end, voice thick with tears.  I’ve lived this scene so many times that I didn’t even need to hear what Aaron had to say. 

“Mom,” he started……and I just told him that I was coming to get him. 

“No!” he said strongly.  “I want you to come at 3:59!!”

“But Aaron,” I countered.  “You’re very upset now so let me come and pick you up.”

“No!!” he forcefully repeated.  “I want you to come at 3:59!!”

He handed the phone to Barb, and she said that he was very firm about me coming at 3:59, but then for some reason he changed his mind and said that I could come on to get him. 

A short time later, he and I sat in Freddy’s.  I figured a Freddy’s burger and fries would be the best medicine for him.  He was relaxed and very happy as he ate his burger, but his eyes were still red and bleary from all the tears.  As I asked him why he was so upset that day, he couldn’t tell me why.  I kind of know why, but he really has a very hard time verbalizing outwardly what goes on inwardly in his mind and emotions.

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So many diseases or syndromes show up in a person’s bloodwork when it’s tested, but what Aaron is missing doesn’t show up firmly in lab work or on a piece of paper.  The connections in our brains that allow us to process and filter our environment, and our responses to life’s occurrences in our environment, are missing in Aaron’s brain.  He cannot just simply deal with issues like I can.  So he reacts, often in great frustration, and getting to the root of that frustration and his reaction to it is what we continually try to do. 

However, we are often very frustrated ourselves……frustrated by Aaron’s behaviors and his reactions and all that goes along with it……that it’s hard to pause, take a breath, and try to figure it out ourselves before we can even begin to help Aaron figure it out.  Add to that our embarrassment at times……our tiredness…….our feelings of failure or ineptness…..and it’s like my box of coupons.

I just want to dump the whole thing and start over!!

Start over with an empty box……new coupons…..all in precise order!

But life’s not like my coupon box with the red lid.  I can’t just dump days or events out on the table, and arrange the new day the way I want.  And neither can Aaron.

But we can start each day with a clean slate, and try again.  We can build on the old experiences and the lessons they taught us.  Clipping here……cutting there…..arranging our thoughts and our responses in the right way.  We do it through prayer, through seeking God’s wisdom, and through loving each other through not only the good, but also the bad and the ugly.  And we have plenty of those last two, believe me. 

And through always keeping in mind that Aaron’s most impacting special need is the one we can’t see in that amazing brain of his.  We don’t understand how he thinks at times, or how he acts, but we do understand that he really wants to do better and that the frustrations for him are far greater than any that we as his parents and caregivers will ever feel.    

There’s one more thing about starting each day anew.  God has promised that His mercies are new every morning.  They’re not based on yesterday and on yesterday’s failures.  His mercies are new and fresh every morning, as is His longsuffering and forgiveness and kindness.

Can I be any less for Aaron? 

I don’t think so.  And I can put that promise on the very top of my daily coupon box.

Fixing My Broken

 

I sit here at the kitchen table, one ear on the washing machine and the other on the baby monitor. Our washing machine was having some trouble two nights ago, so yesterday when Gary got home from work he opened up the back and got it all fixed. At least we hope it’s all fixed. That’s why I’m listening as it washes a second load this morning, wanting to be sure it’s working as it should.   A broken washing machine is no fun!

And my other ear is on the baby monitor because Aaron had two hard seizures last night. He’s been out of bed this morning, drinking his requisite three cups of coffee and then back to bed. He will sleep off and on today as he recovers. I’ll continue to listen for further seizures, which he often has during the day following his night episodes. Poor Aaron. He and I are still hoping to take supper over to Shawna and Aaron’s other friends at the house in which they live. He keeps asking if we can still go and I keep hoping that we can. Why do seizures have to so often mess up his fun times? It makes me sad for him. So in a sense a broken Aaron is no fun, either…..for him, certainly.

I don’t look at Aaron as broken, but I look at his seizures that way. They interrupt his life so often and so it breaks my heart for him. They break into his routine and into his plans, mess up his sleep and his following day, make his bitten tongue so sore, his head hurt, and all the rest that goes along with these awful things.

It makes me think about how we live among so much brokenness. There are so many broken issues and broken people all around us. Just this week I visited my dear friend, Atha, who is still struggling as she recovers from a stroke. Our friends in Texas, Steve and Dona, are working hard on his stroke recovery. Another friend’s son died from cancer early this morning. A friend is undergoing heart tests this morning. Our own daughter will soon have more medical tests run as her body continues to show a problem as yet unfound. Scrolling through Facebook…..looking at my prayer list……visiting with others on the phone or at lunch only confirms the deep hurts and problems that many are facing.

Our broken world is marred by sin, fractured back in the garden as Adam and Eve willfully disobeyed God. We and our world continue to bear the consequences of that sin in a universe imperfect now, not as God planned. But it’s not hopeless. Not at all. God made a way for each of us to come back to Him through His own Son. Jesus paid the price of sin, and for all who are called and respond to God through Jesus, there is life and hope.

God fixes our broken.

But we still have this life here, lived in broken bodies and in a broken world.

I watched Aaron on Sunday morning as he cut the Sunday coupons for me. This is his Sunday routine, performed faithfully for me as only Aaron does. In fact, he won’t let me come near the coupons with a pair of scissors because I don’t cut them correctly. Aaron cuts on the dotted line as best he can. Not near it. Not beside it. Not close to it. He cuts ON the dotted line.

Then he takes the little strips of paper that he has cut off and he meticulously snips them into tiny pieces as he holds the strip over his special trash can that’s just for that purpose and no other. It takes lots more time than necessary, but he doesn’t care about that. He has always, and will always, clip coupons and paper strips in this fashion. It’s very fascinating to watch.

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After the coupon is cut, he slowly and methodically places it into the coupon box. He doesn’t just toss it in. He slowly and carefully puts each coupon in its position, all neat and orderly. Look at the coupon box from this past week.

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As I think of the brokenness of life and of our world this morning, I’m reminded that for believers God is much like Aaron as he clips my coupons. God is full of purpose and planning for my life. He carefully cuts, always ON the dotted line, and He puts events and people and order into my life in the exact way that He knows is best. He is structured and precise as He takes each individual element of my life and places it exactly where it needs to be. His timing is perfect. His placement is always on spot. I may not understand it all. I may not like it all. But I know the One Who is doing the clipping and the snipping and the placement of each single area of my life, and of those I love.

And I know that I can fully trust Him to do it right. It’s called sovereignty.

“The Lord will accomplish what concerns me; Your lovingkindness , O Lord, is everlasting. Do not forsake the works of Your hands.” Psalm 138:8

Someday, maybe not until heaven, I’ll be able to open that box that holds my life events. I’ll see it all together, clearly, and I know that I’ll see order. I’ll see the plan of God. I’ll see each piece of my life put down just where and how God wanted it, always for my good and for His praise.

Even when I mess it up, God brings order back into it as I allow Him to do that. He loves me that much, like the verse above says.

So I’ll let God do the clipping, even when I don’t understand it or even agree with all of it. Because I know I can depend on Him to do it right, every single part and piece.

He keeps His ear on us, and He fixes our broken. He’s the only One Who can.

Name Your War

We recently renovated Aaron’s bedroom.  It’s fun to have newly painted walls and ceiling, new closet doors painted a little darker than the walls, new valence and bedspread, new ceiling fan, the furniture moved to new positions, and new organization to Aaron’s clutter.  I bought some really pretty bins that are a tough woven fabric with a bright fabric lined interior.  They are a deep gray color and blend in nicely with his light gray walls.  One of them fit perfectly in Aaron’s night stand opening.  Not only that, but his Handy Answer books fit in that bin perfectly, and even left room for Aaron’s bedtime log book on top.  Perfect!  I was delighted!

But Aaron…..not so much.  He has adjusted to everything in his new room, but there is one area in which he will not budge.  You see, I want Aaron’s floor beside his bed to look like this:

 

Yet Aaron insists on keeping his books that he is reading, as well as his bedtime log book, like this:

 

I want things one way.  However, do or die, Aaron insists on keeping his books in their line beside his bed.  On the floor.  Not in the nice, orderly bin that I purchased for the purpose of keeping his room and floor neat…….but on the floor.  I’ve quit fighting it.  We could have the Books on the Floor War for the rest of our natural lives and nothing would change Aaron’s mind.  Of this I am certain.

The Books on the Floor War isn’t the only battle we fight.  There is also the Is the Plant Real War.  I turned around for a split second at his last doctor appointment while in the waiting room, so at the elevator Aaron held up a leaf…..a leaf that he had just pulled off the plant in the doctor’s waiting room. 

 

“Mom!” he excitedly said.  “That plant is REAL!”

No kidding, Aaron.  And he heard once again the lecture that goes along with the Is the Plant Real War, but I knew my brilliant wartime lecture was falling on deaf ears. 

We also have the Grey Spot on the Sock War.  I don’t know why Aaron insists on wearing the heel of his sock up on the top of his ankle.  I have instructed, demonstrated, assisted, and again lectured…..but to no avail.  More often than not, the grey heel is terribly misplaced, but Aaron doesn’t terribly care.  Actually, he doesn’t care at all.  And he doesn’t understand why I do care. 

Then there’s the Take Things Off the Kitchen Counter And Come Show it To Mom War.  Does he think I don’t know what’s laying on the kitchen counter?  Saturday he came downstairs where I was watching football.  He stood right in front of me, holding up a stick of butter that he had just nabbed off the counter as he walked through the kitchen.

 

“Mom!” he said.  “This says salted butter?  Then it must be sweet!” 

I laughed, and Aaron thought he had won this battle of the Take Things Off the Kitchen Counter and Come Show it To Mom War.  So he launched right into the If It’s In My Hand I’ll Let Jackson Sniff It War, and another mom lecture ensued. 

Finding humor in the way Aaron thinks and acts is one way that I get by from day to day.  He truly makes me laugh a lot, yet there are many times that I really do want certain areas of his life to be more orderly in ways that matter.  I wish that Aaron’s reactions could be as disciplined as a picked up floor, for instance, but there are occasions that his emotions become messy and even painful. 

Such was the case yesterday.  The set-up actually began the day before that, on Wednesday.  Aaron woke up for some reason at 5:09, he said.  Of course he would be so precise.  He went to the bathroom but said he couldn’t go back to sleep, so he went all day with no nap and by that evening was very tired.  Then the next morning, yesterday, he was sleeping soundly when I finally had to get him up to get ready for his day.

Waking Aaron up is usually not a good way for him to start his day.  He was pretty grouchy before we left for his group, but he buckled down and went.  However, on up in the day he had a meltdown with Barb.  He was very belligerent with her and vocal.  He also broke his watch….again.  When he came home later, the first thing he did was to ask me if I had heard what had happened.  I hadn’t, but I could tell from his stressed look and his tired eyes that it wasn’t going to be a pretty story. 

Aaron also shared it with Gary later as they walked around the yard.  I just watched them and thought of poor Gary, handling issues at work all day and then coming home to hear another war story of Aaron’s.  Yet it’s what we do as parents….what all parents do….although at our age we did think we’d be done with all this “stuff” that needs our wisdom and patience. 

We want Aaron’s life to be neat, with everything in its place, like books in a bin.  Aaron had been very happy for a couple weeks, maybe longer, and we were really enjoying the reprieve.  But autism and autistic behaviors don’t just disappear into a neat bin beside his bed.  I had seen the warning signs and I was right.  Aaron hit the proverbial wall and pieces were now scattered all over.

Gary and I helped him pick up those pieces as best we could.  So did Barb as she texted me and told me to tell Aaron that she loved him and would be happy to see him tomorrow.  “He has had many good days,” she texted, “and tomorrow is a new one.”

She was right.  I had to remind Aaron of that fact as he came downstairs this morning with a stormy look on his face, saying he didn’t want to go to Paradigm because of what happened yesterday.  We had to work through it this morning, with me being careful not to escalate this angry time into a War of Words.  He came out swinging, too, as he realized that I was checking the time of the West Virginia/Oklahoma State football game for tomorrow.

“I vote for Oklahoma!!” he declared…..hoping that he had wounded me.  He had no idea of how funny that was to me. 

He did go to Paradigm this morning, rather happily, despite these proclamations during his What Words Will Work on Mom War:

“I’m only going because you want me to!”

“I’m only going because you’re making me!”

“I’m only going because I want pizza!”

 

And when we got to Paradigm, Aaron wanted me to come in and talk to Barb, which I did.  Aaron was a little huffy at first.  He wouldn’t hug Barb, but shook her hand very properly…..and I smiled.  Hopefully he’s been all right today.  Hopefully the war for him is over.  Hopefully his scattered pieces are back in the bin, neat and orderly, although he’ll always leave a few on the floor where he wants them. 

And we leave them there, because some battles in some wars just aren’t worth fighting.  It’s part of what makes Aaron unique, challenging, and full of his own way of living in his world.

It’s part of what makes us stay on our knees, trusting God for what we need to fight whatever war may come our way today. 

  

 

Lights On. Lights Off.

There is something laying on the floor of our garage right now.  It’s a baggie that contains some coins….some coins that Aaron needed to take to his day group today.  The bag is on the floor of the garage because Aaron put it there.  Well, he didn’t just put it there.  He threw the bag down on the floor.  He threw the bag down on the floor because he was angry.  He was angry because he didn’t want to go to Paradigm today.  He didn’t want to go to Paradigm today because of something that happened there on Friday.  He didn’t have to go yesterday because of a doctor appointment and then a fun day with me…..so he doesn’t want to go today, either.  Are you following me?

It’s how we have to follow Aaron.  Living with Aaron means living with autism, and living with autism means that we often follow Aaron as he goes down one trail, switches to another, and back tracks to the first one, but is soon off on a wild tangent, and off we go.  Living with Aaron and living with autism means that we must understand, as best we can, the things that Aaron can’t easily or sometimes ever express.  At times it’s a fascinating journey.  At times it’s a funny journey.  And at other times, it’s a very frustrating journey.  It’s really wild when all those emotions are mixed up into one ball.  Boy, can we bounce from one to the other!

Anyway, back to the bag of coins on our garage floor.  Aaron was awake a little after 5:00 this morning.  I heard him go to the bathroom, but he never went back to sleep.  He was in the kitchen watching me scramble Gary’s eggs well before 6:00.  He ate some sausage and I took his coffee to his room.  He came several times and stood behind my chair as I had my morning quiet time, sometimes talking and sometimes just staring.  He showered and took his pills.  And just under the current of his swirling mind, I knew what was there.  He didn’t want to go to Paradigm.  But when he saw that I was really going forward with our morning routine, like cleaning his glasses and handing him his wallet, he was not happy anymore.  On the way to the van, he turned and threw the bag of coins on the floor.  He left them there as we got into the van, and I am leaving them there for him to pick up when he comes home.  But he went to Paradigm, was met by the manager who rubbed his back and calmed him down (I hope), and hopefully will come home with happy stories.  And he will pick up the bag in the garage, because he needs to do that.  It’s a small lesson, but a lesson regardless.
 

Sometimes we don’t necessarily understand what makes Aaron do certain things, but we know that these actions are set in stone.  We are fighting a losing battle to try to change them.  Like his sausage this morning.  Aaron got his own silverware because he knew that Mom wouldn’t do it correctly.  I knew what he was thinking as he reached into the drawer and pulled out his fork but also a knife and a spoon.  Who needs a spoon for eating sausage?  Aaron does.  There’s no need to make a big deal about it or try to make him put it back.  Why make it an issue?

And the family room lights.  I don’t turn them on in the morning because we’re not sitting in there and so we don’t need the lights on, right?  But every time Aaron walks through that room, headed for the kitchen, he flips the lights on.  I flip them off at the first opportunity.  He flips them back on.  Lights on.  Lights off.

This morning he walked into the kitchen.  Lights on.

I soon took his coffee upstairs.  Lights off.

He followed behind me.  Lights on.

I came back downstairs.  Lights off.

He came behind me again.  Lights on.

I carried my own things upstairs.  Lights off.

He finished taking his pills and then came upstairs.  Lights on.

Sigh.

On the days that he is home and wants to eat lunch, he will eat only if it’s 12:00 or shortly after.  He will not eat at any time before 12:00.  Not 11:48.  Not 11:55.  Not even 11:59!!!!  And if I ask him what time he wants to eat, he replies, “At the time for lunch!”  As if Mom is a little thick headed, you know.

One day recently he said, “Mom, I’m sleepy.  I think I’ll take a nap at 12:00.”

I said, mistakenly, “Well, it’s almost 12:00 now.  You could go ahead and lay down.”

“But it’s 11:53!!!” he exclaimed.  “It’s not 12:00!”

Well, of course.  Whatever was I thinking?!

Wheel of Fortune is another one.  It starts at 6:30, so Aaron has decided that he will turn the television on at 6:28.  Again, not at 6:25 or 6:26 or even 6:27.  No.  Only….ONLY……6:28.  He will stand in front of the TV, literally staring at the clock, until it is SIX…TWENTY…..EIGHT!!!! 

It actually makes Gary and me smile. 

Movie credits.  Oh yes, movie credits.  When Aaron watches a movie in his room, he watches the entire movie.  But to Aaron, the entire movie means from the moment the DVD begins until the moment the DVD is over…..completely over.  That means watching the credits…..every single bit of the credits, until there are no more credits to watch.  He stares at them intently, too. 

 
So yesterday, after Aaron’s doctor appointment and after eating lunch at Abuelo’s, we went to see San Andreas.  He saw it at the theater on Friday, but he really wanted to see it with me.  Yesterday worked out perfectly for that.  For one reason, the theater wasn’t full at all and so I wasn’t as stressed about Aaron’s noises and rubbing his hands together when he got excited.  And this is a VERY exciting movie.  We had a good time, and when the movie was over I could tell that Aaron didn’t want to get up.  Why? 

Really?  Surely you know.  The credits!!  Aaron would have gotten up if I had insisted, but I knew that watching San Andreas in the way that mattered to Aaron meant watching it to the bitter end…..which meant to the very long, last credit.  Everyone had left the theater, and the cleaning crew stood in the back waiting on us to be finished, but Aaron and I did it.  We watched every single line of every single credit for every single miniscule part of San Andreas.  Aaron put his hands on the back of the seat in front of him, enthralled at getting to watch big screen credits all the way to the end.

 
 
This is what we often do as parents of Aaron, and as we live with autism.  I entered Aaron’s world at that moment.  It was actually funny and endearing.  We left the theater laughing, and I laughed even more when Aaron bent over as he rubbed his hands together furiously, asking the ticket taker why San Andreas was “fictinous,” as Aaron says.  The stiff, unsmiling ticket taker was rather put out at this odd situation and made some curt comment, which totally didn’t faze Aaron.  That poor guy missed out on a wonderful opportunity.

I’m learning more and more to enjoy those opportunities to enter Aaron’s mind and to follow him on his paths. I am blessed to partake of Aaron’s world on most days, but there are many times when it’s hard and frustrating.  Which brings me back to the bag on the garage floor.  Hopefully, as he picks the bag up off the floor, Aaron will talk to me about what was really bothering him.  Hopefully, he will learn that he needs to correct his own wrong actions.  Until the next time he takes off down that trail of frustration, but we’ll deal with that as well.

Lights on.

Lights off.

 

 

Still Our Sweetie Poo

I got one of those phone calls yesterday that I don’t like to receive.  It was Barb, from Paradigm, trying to tell me about an incident with Aaron.  It was hard to hear her, though, because she put it on speaker and I could hear Aaron in the background.  He was yelling as he tried to explain his story, and he was crying, and no one had to tell me that he had just had a meltdown.  My heart sank.  It’s been awhile since we’ve seen this with Aaron.  I felt drained when I got off the phone, and I wasn’t even there when Aaron lost it.  It’s just very discouraging to feel like things are going along so well, and then BAM, he hits that wall again. 

In his frustration, he broke his watch and he broke his brand new two day old glasses.  This is very typical of Aaron when he gets that upset.  He will break something that’s important to him, and then afterwards he’s just eaten up with remorse.  The remorse comes from all of his behaviors when he loses his temper, but he knows that breaking things comes with repercussions.  He won’t get a new watch right away.  He didn’t know if his new glasses could be fixed. 
 

The repercussions with people’s hearts is an area that he is not quiet adept at understanding.  He’s doing better with empathy as he’s gotten older, but he is usually very narcissistic and only thinks of himself when he is in a rage.  I guess many of us are that way when our emotions take control, but Aaron is often that way even when he is even keeled.  Thinking of others and what they are feeling has been long in coming for Aaron’s autistic mind.  He’s getting there, very slowly, sometimes more than others.  For instance, not long ago he found out that Andrea had a migraine.  The day that she and I were talking on the phone and she mentioned it, Aaron was frustrated that our phone call was taking my time away from him.  I chided him when I got off the phone about how uncaring he seemed.   The next day when she called, he said to me, “Tell Andrea I cared for her migraine!”  He was very pleased with himself that he cared, because even he knows how hard it is for him to feel that emotion, and because he felt guilty that he had not felt it at first for his sister.

He came home yesterday, face and eyes all red from crying.  He told me what had happened, so we discussed it as much as I felt that he could handle.  He lets me know when he has had enough.  Barb and I talked privately when Aaron was up in his room, and Melinda and I texted.  I felt like I had a good grasp of what had happened, although part of it was still fuzzy.  That’s why I tried to talk to Aaron again after Wheel of Fortune was over, but he did not want to talk about it further.  The book was closed, in his mind. 

I was almost asleep last night, at 11:30, when I heard our monitor on the nightstand beeping.  It meant that Aaron had turned his unit off in his room.  And it wasn’t long before our bedroom door opened and Aaron strode in to tell me that he had turned his monitor off and he had no intention of turning it back on.  There!

“Oh boy,” I thought.  “Here we go.”

Aaron has these residual effects from his behaviors…..effects that show up hours after the incident is over and hours after we have talked about it.  I followed him to his room, noticing his agitation.  He turned and told me that I was mean, that Dad was nicer, etc., etc.  I knew that my second conversation with Aaron was the cause of this, but I couldn’t take it back.  He thought I didn’t believe his version of the story….that I would make him leave Paradigm……and on and on.  And he assured me once again that he was NOT turning on his monitor.  That was the biggest sign of his rebellion that he could come up with at the moment. 

I left his room frustrated, and Aaron was frustrated, and the monitor stayed off all night.  This morning, I left Aaron alone when he got up.  Even when he stood staring at me silently, I did not speak to him.  I poured his coffee and carried it upstairs.  I got myself ready and I opened my bedroom door, and finally he walked in and told me that he was not going to Paradigm today.  I knew that was coming, so I asked him if he would go on Monday and he gave an exuberant yes. 

So many of my decisions at these times are uncertain.  Is it right to not make him go today to his group?  Do I still get him his Friday goody bag?   Was this outburst because of his new seizure drug….the one that can cause anger?  Do I take him off this drug?  Or do I wait awhile longer to give it more time? 

Well, I didn’t make Aaron go to Paradigm.  I know this is his typical response to such stressful situations, and I know that he does need time to emotionally recover and to sort it all out in his head.  His big, impulsive hug for me later showed me how thankful he was that I let him have some time and space today.  I still don’t know about the new seizure drug and what to do there, but I think I’ll give it some more time.  I think.  I did not get him his Friday goody bag.  He hasn’t even asked about it because he knows that he really messed up.  My mother heart wants to take care of him…..to blame the autism….to quote the professionals about his emotional deficits.  But I know he also needs consequences, and so the goody bag will not happen today.

I did take his glasses to the optometry shop.  “Wow!” the technician said.  “He sure did a number on them.”  I didn’t have Aaron with me because I wanted to explain what had happened, but not in front of Aaron. 

“Yes,” I agreed.  And I wanted to add, “You should see the number he’s done on my heart, and on the hearts of others.”  But of course I didn’t say that. 

By some miracle, the young man brought Aaron’s glasses back to me later, all fixed and ready for Aaron to wear again.  I wish it would be as easy to fix the situation of yesterday, but that will take more time. 

Later, Aaron and I took Jackson for a walk around our neighborhood circle.  It’s a beautiful day, perfect for a walk.  When we got home, Aaron quickly grabbed his mulch bucket and situated himself out in the flower bed for some mulch time.  He stayed there for nearly an hour, relaxing and sorting out his thoughts with each little piece of mulch that he broke.  It’s time that he needed…..quiet, peaceful, reflective time for him. 
 

Wouldn’t it be wonderful if mulch would cure autism?  Or if mulch time would give me all the patience and wisdom that I need?  I would say, “Scoot over, Aaron!  Make room for me!  Will you share your bucket?”

I know every parent of autistic children can understand how helpless I sometimes feel.  How embarrassed at my son’s behavior.  How frustrated and then sad at his response. 

Then I think of Barb, who loves Aaron and who said, “Tomorrow’s a new day.  We’ll just put this behind us and go forward.”

And Melinda, who also loves Aaron, and who said, “Aaron informed me that I am NOT his sweetie poo anymore!  Well, he is still my sweetie poo.”

That makes me smile, and it makes me thankful for those that work with Aaron and love him even on the bad days.

We will, and we do, move forward.  Today Aaron said, “Mom, I’ll turn my monitor on tonight.”  It’s his way of telling me that he’s better now, and that he is ok with me…..mean old Mom of last night. 

Yep, it’s a new day and we will go forward.  And I just hope Aaron knows how many people cared for him when he messed up.

He’s still our sweetie poo!

 

 

Wanting Aaron to Do Things….Or NOT!

We’ve been dealing with an issue concerning Aaron and another client at Paradigm that reminds me of the saying, “What goes around, comes around.”  Aaron and this client have a history.  When I found out that A. was at Paradigm, in fact, I became very worried…..and for good reason.  Briefly, their history is that when Aaron was a new student in a school here, A. was the one assigned to help Aaron adjust.  A. was very bossy, and Aaron just doesn’t do bossy.  He became very frustrated as the day wore on, and soon he began flicking A. with his finger.  His stinging little finger flicks became quite an issue, and so that afternoon I got a call from the school saying that they would have to charge Aaron with assault if he didn’t stop.

Wow!  So that night Gary and I told Aaron over and over not to touch A.  We preached no touching during dinner, during Skip-Bo, during the bedtime routine, and again the following morning until the moment Aaron got on the bus.  I worried all day, but I considered the fact that no phone call from the school was a good sign that Aaron had obeyed our repeated directives.  That evening, as we ate supper, I finally asked Aaron if he had touched A. 

“No,” he said.  He paused.  “But I hit her with my notebook.”

It makes for a funny story, even then, but it was such a tangible example to us of just how literal Aaron is.  Also, it showed us that we were in for a long school year.  We were right about that!  And now A. is a client at Paradigm.  When I first heard that she was there and I figured out that she was THAT A., I knew we were in for some rough waters.  And by the way, if I told Aaron that we were in for rough waters, he would wonder what on earth water has to do with him and A.

So, yes, Gary and I have found ourselves in the position of doing damage control over the past year or so that A. joined Paradigm. She and Aaron seemed to pick up right where they left off.  Even if they are just teasing each other, the situation often ends up with one of them getting upset.  Aaron doesn’t upset easily when it comes to his version of teasing, so I have to say that it’s probably A. who is frustrated most often.  Both of them dish it out, but I think Aaron takes it better than A.  But Aaron’s teasing can be so annoying, so loud, and so inappropriate, that we can understand A’s frustration.  Yet A. often starts the ball rolling, so we are in quite the dilemma.

We’ve told Aaron to just not tease…..totally quit teasing, especially teasing A.  However, almost everything Aaron does he defines as teasing.  If we want Aaron to totally quit teasing, he must either have no human contact or be in a coma.  We have tried to redefine the word “teasing”……we have tried to explain true teasing……we have tried to exemplify proper fun teasing…..but nothing really works with Aaron.

Autism is so complex.  The effects of Aaron’s way of thinking are also very sad.  Barb, a manager at Paradigm and a special person in Aaron’s life, told me yesterday how sad it was to watch Aaron trying to fit in.  We see it at home all the time, especially when the whole family is together.  I wrote about his breakdown at Christmas.  Aaron so wants to be a part of a group, but his attempts often result in deep frustration for him because his attempts fall short of what is usually acceptable.  We, too, are so embarrassed or upset by his actions that we often have a difficult time stepping back and seeing what the real issues are according to Aaron’s way of processing. 

For instance, you don’t whack someone hard on the back in order to get their attention or to express your discomfort…..but Aaron does.  You don’t pinch a person’s arm, either.  Or interrupt other’s conversations by saying, “HEY!!”  Or saying, “MOM!!”  Over and over.  And then talk about aliens or Godzilla or why the Phantom of the Opera wears a mask.  At Paradigm, you throw in the fact that many of the other clients also have social challenges and sometimes the atmosphere becomes volatile. 

Like trying to mix A. and Aaron. 

A’s mother has expressed some concern to Paradigm.  I don’t blame her.  That’s why, after Aaron told me last week that he gave A. a resounding whack on her rear, I told Aaron that he should prepare for her parents to be very upset.  I told him that one day her parents were going to put their foot down.  Period.

Yesterday there was a conversation at Paradigm about the A. and Aaron situation, and this intervening individual said that Aaron was not to be around A. anymore.  Or something to that effect.  The Paradigm staff handled it well, standing up for Aaron, but I knew nothing of all this when Aaron came home.  Aaron thought it was A’s mom who had given this ultimatum, but it wasn’t. 

I talked to Aaron as I prepared supper, telling him that he was seeing the results of his actions…..results we had told him about, especially last week.  I was opening some cans as Aaron stood beside me, listening.  I hoped he was taking this to heart and learning a lesson.  For a few seconds there was a pause in my lecture, and Aaron stood there.  Finally he spoke.

“So A’s parents put down their foot,” he said.

How I wanted to laugh! 

“Yes, Aaron, they put down their foot,” I replied instead.

Aaron stared at me for a few more seconds as the can opener whirred.

“What does that mean?” he finally asked.

And I realized once again that if I want to help Aaron, I must come to his level.  He had no idea what it meant to “put down their foot.”  Silly me!  All this time I thought I had made such a good point, but Aaron was just wondering why A’s parents would “put down their foot.”  What was that all about?

Just as he has no idea, strange as it seems, how to always effectively and appropriately interact with the people in his world.  He wants to….he tries…..but he just doesn’t always get it and he isn’t always able to control the impulses that usually control him. 

Aaron didn’t want to go to Paradigm this morning, which is his way of handling tough and embarrassing situations in his life.  However, we know that Aaron can’t be allowed, if at all possible, to retreat from life.  So I gently told him that he was going, several times during our morning…..even up to the point that we were in the van at Quik Trip to meet his ride. 

His driver was filling up with gas, so I tried to get Aaron to just get out and walk over to the Paradigm van there at the pumps.  Nope.  Aaron wanted to do it the way he always does, waiting for Lisa to pull up beside us.  When I mentioned my idea to Aaron, in fact, he had a very insightful comment.

“Everyone always wants me to do things!” he replied.

Yes, we do.  We have good reasons, too, and the best of intentions for Aaron.  But he sees our ideas as very annoying, most of the time, and also nearly impossible.  I guess rather than “put down my foot,” I should try harder to put away unrealistic expectations and meet Aaron where he is.  Be on his side, continue to train, and always see the world through Aaron eyes more than through my own.

And to realize how difficult it must be for him to climb in that van and face another day of attempting the sometimes impossible.  Just going to Paradigm today was huge for Aaron, much less the thought of facing A. and somehow controlling his impulses for yet another day.

Let’s hope he has a good day.  An appropriate day.  A fun day. 

And that Aaron isn’t the one “putting down his foot”……on top of A’s foot, knowing Aaron. 

What goes around, comes around.

 

 

Love Rules!

Here we are.  It’s the third day of our new year.  The third day of new beginnings, so I’m told, and new attitudes…..new challenges and new goals……new everything.  But I have our washing machine running this morning and it’s reminding me that the sameness of life also continues despite my desire to work up some enthusiasm for newness.  Aaron had a seizure last night and so once again I am washing his bedding from the mattress pad up to the top layer…..his favorite cheetah blanket, or whatever animal it represents.  I’m not complaining at all.  It’s our life and I’m thankful that I’m here to be a part of it, and to care for Aaron.  It’s certainly not new.

Aaron doesn’t care for new, unless it’s a new video or a new bag of candy.  He doesn’t like new routines or new schedules, and he doesn’t like the people or the holidays that cause a disruption to his sameness.  On Thanksgiving Day, Aaron came into the kitchen while I was preparing our meal.  He asked when we would be eating.  I told him it would probably be around 2:00.  He stared at me for a few seconds and then said, “That’s why I was thinking if I could eat lunch.”  I didn’t have to look at the clock to know that it was nearly 12:00 and to Aaron, 12:00 means lunch……Thanksgiving Day or not.  He did agree to wait for his meal, but he did give remaining in his routine his best effort as well.

We try not to give in to Aaron’s routine oriented way of viewing the world when there are special days or events to consider.  We give it our best effort in order to include Aaron in our family traditions and our special times together.  Yet we know that at times it’s not only difficult but nearly impossible for Aaron to comfortably enter into our celebrations together as a family.  The complexities of his autistic world, at times, will simply not allow him to move beyond a certain point.  There are several reasons for this dilemma that he…..and we……face during the holidays.

One reason revolves around conversation.  Aaron doesn’t understand and is rarely able to enter into the normal ebb and flow of family conversation.  Andrea and Andrew both came home for Christmas on Christmas Eve.  We sat around the table and talked that evening, and all of us noticed Aaron.  He had moved to one end of the table.  His eyes darted back and forth between us as we talked.  We were catching up with Andrea and Andrew……their lives…….their jobs……their friends.   Soon Aaron would loudly interject with his “Hey!!”  And we would all look to him as we gave him an opening to talk, but he often didn’t quite know what to do with this opportunity to enter into our flow of talk.  So he would pause and then he would continue.  “Uh…..well…..did you know that my favorite character on Phantom of the Opera is the Phantom?!” 

His comment didn’t fit at all into what the rest of us were discussing, but we’re used to this with Aaron, so we all commented in some way.  We really tried to act as interested in what he was saying as we did with the rest of our conversation, but sometimes it’s hard.  And if you give Aaron an inch, he’ll take a few dozen miles and he’ll talk until the rest of us are…….honestly……..bored beyond words.  So after we all responded to Aaron, we would pick up our conversation where we had left off and once again Aaron would sit there with darting eyes and bated breath, waiting for his next opportunity.  “Hey!!”  And we waited.  “Uh…..well……did you know that there’s a Queen alien?  Is she bigger than the other aliens?  Why do you think there’s a Queen alien?”  So then it’s our turn to say, “Uh….well…..we didn’t know that, Aaron.”  Come on.  Show interest……show enthusiasm for Queen aliens and for Phantoms and for whatever else Aaron chooses to talk about, we’re all telling ourselves. 

Another reason that Aaron gets stuck during the holidays in his point of no return is the change in his routine.  Everything is messed up.  His meal times……watching Wheel of Fortune with Mom…..bedtime rituals, especially if Mom doesn’t come right away to say goodnight……playing SkipBo……..having his bathroom to himself……and so much more.  His brain is soon on overload, no matter how Gary and I try to maintain his sense of normalcy. 

The third reason for Aaron’s holiday struggles……and probably the straw that breaks the camel’s back……is having to share his time and space with others.  Aaron has gotten used to being the only “child” at home now.  He is doing better with having Andrea and Andrew come for visits…..probably because he knows he can talk and talk to someone other than Mom and Dad.  We weren’t sure how he would react to Megan, Andrew’s girlfriend, being here again this year.  Megan arrived the day after Christmas.  I was a little nervous, but I greatly relaxed as we all stood in the kitchen chatting and I noticed that Aaron was happily talking.  Soon I had him tell Megan about his movie of the moment…..Phantom of the Opera……which fortunately is one of Megan’s favorites.  Aaron loved feeling included as all eyes focused on him, and he really enjoyed our interest in hearing him sing his favorite Phantom of the Opera song.  He’s hilarious when he sings and we all laughed with him as he relished being the star.

 
And then I goofed.  Aaron had returned to his room, so I asked Andrew to go up and tell Aaron that it was time to eat.  There are reasons that this wasn’t a good idea, but suffice it to say that Aaron from that point forward began to do down the path of frustration and anger.  He wanted me to come get him for dinner, for one thing, and though we roll our eyes at that, it was this important to Aaron.  His nearly overloaded system was beginning to crack under the holiday strain.  He was rude to Andrew during lunch and we knew then that we were facing an uphill battle.  When we later opened presents from Megan, Aaron sat with his back to Megan and Andrew.  He was edgy still. 

Then off we went to walk through Botanica and see the Christmas lights.  It was cold and we all bundled up, and piled in the van……including Aaron.  I let him have his favorite, normal passenger seat, beside Gary.  And wonderful Gary walked beside Aaron and kept defusing him the whole way through Botanica.  You can see in the pictures that Aaron is NOT seen.  When he’s in this frame of mind, you can forget pictures.  They only make him angrier.  We were way down that frustration path at this point.

 
 
We got home and I was hurriedly taking off my coat, getting ready to set out all the snack foods to enjoy while we played our Christmas games.  Aaron knew he was welcome to stay downstairs and play the games with us, but Aaron detests this part of Christmas.  He doesn’t like the silliness and the loud laughter…..at all!  And in the mood he was already in, we knew he wouldn’t want to stay.  So as I removed my coat, Aaron turned to me and loudly said, “Mom, I wish Andrea and Andrew and Megan would just leave, and that I could have things normal again!”

Embarrassing, yes…….especially because Megan is still new to all this and we so wanted her to feel welcome.  Thankfully she’s kind and understanding.  You must be in these situations with Aaron.  But Aaron’s comment was also telling as he revealed, in his blunt way, that he wanted his normal life back.  The night went downhill from there, if that was possible.  The five of us totally enjoyed the games, but we were often interrupted by Aaron’s heavy footsteps on the stairs and the floor as he came down to check things out.  He really wanted to enter in, I believe, but he didn’t know how to comfortably do that.  At one point, he looked at the container full of wrapped Bingo gifts and he softly asked if he could have one.  That made us sad.  Of course, we let him unwrap one and he was happy to get a Wal-Mart gift card.  Then off he went to stew in his anger some more.

 
Aaron and I eventually ended up in my bedroom, where he talked angrily about how we only love Andrea and Andrew, and only want to talk to them….and to Megan.  He cried for a long time, a sure sign of deep frustration.  My heart hurt for him as I tried to comfort and assure him of our love.  I really believe that Aaron senses a difference in how we talk…..our inflections and our words……when we talk to him compared to the others.  Try as we might, we can’t manufacture the same interest in his comments compared to theirs.    Aaron is perceptive……so perceptive. 

I also know that he needs repercussions for poor behavior, so I took the movie away that Andrew got him for Christmas, as well as the lap desk from Megan.  Finally Aaron came downstairs, face and eyes red from crying, and he gave a semi-apology to them.  I helped him into bed, but it wasn’t long before we heard him coming back downstairs.  He walked into the room where we sat, tensely waiting for another outburst.  But in his hand he carried his Ghostbusters movie, which he thrust toward Andrew.  “Hey Andrew!” he enthusiastically said.  “Have you seen this movie?”  And Andrew, with equal enthusiasm, said that he had and then he said, “Who you gonna call?”  Aaron laughed and took the movie back upstairs…..and we knew that his crisis was over and all was well once again.

The next morning, Aaron wanted to give some of his crescent rolls to Megan and Andrew for breakfast.  And when they left for a couple days, and returned to see us again, Aaron was fine with that.  I wish this scenario wouldn’t be repeated next year, but I’m realistic enough……we all are…..to know that it very well might be.  I returned Aaron’s movie and lap desk from Andrew and Megan to him, hoping that he understood the consequences of poor behavior and the reward of good behavior.  We always hope that Aaron will understand and that things will click in his brain, but his brain isn’t like ours at all.

 
So we do our best to understand Aaron, and to love him in all his unique and often frustrating ways.  Like Andrea said to Megan on the night I was upstairs with Aaron, as they cleaned the kitchen…..”So now you see what it’s like to be a part of our family.”

Yes, it’s not easy to be a part of this family sometimes.  Sometimes I think…..AUTISM RULES.   But then I realize that only one thing really rules.  LOVE RULES!!  We don’t necessarily love autism, but we all love Aaron.  We seek to understand autism, and therefore better understand Aaron.  I see growth in all of us that has occurred over the years.  It’s the growth based on our experiences with Aaron, and growth based on knowing that Aaron may improve in some areas, but he will never be totally like the rest of us. 

We may feel beat up and tired and angry ourselves, but we must remember that love rules over all.  God’s love for all of us, and our love for each other and for Aaron, will remain firm during these rough spells.  There’s nothing new about that, even in this new year. 

What a long post!  I have laundry to put in the dryer, and much more to wash.

With love.