Sometimes It’s the Littlest Things

Yes, little things…….

On Friday it was 45 minutes.  That’s not a long time, really, when you think about it.  Such a little thing.

Gary’s truck had to be kept in the shop unexpectedly after an oil change late Thursday afternoon, so I told him to just drive the van to work the next morning.  Paradigm is always willing and able to pick Aaron up at the house when needed.  However, on this particular Friday morning when I texted Paradigm, they said they could only pick Aaron up early…….at 9:30.  We usually leave the house at 10:15 when I take him to meet his group. 

I went into Aaron’s room to tell him that Paradigm would be there to pick him up… 9:30.

“But we don’t leave the house until 10:15,” he flatly said.

And I knew before any other words were spoken that we were in trouble…….I was in trouble.  I tried to reason with Aaron, but his rigid way of thinking was preventing my words from penetrating that brain of his.  The more I used reasoning, the more he objected.  Of course, his only argument was that we don’t leave the house until 10:15, but that is all that Aaron needed. 

He escalated with every reasoning argument that I had, so I just had to let it drop.  He didn’t go to Paradigm on Friday.  He also didn’t get his end-of-week treat because he didn’t fulfill his obligation of going to his group and participating every day, but he didn’t care. 

We leave the house at 10:15, or Paradigm comes to pick him up at 10:15…..or later.  Not 9:30.  Never early…..never 9:30.  Got it?

All of this because of 45 minutes.

Such a little thing……

Yesterday, Sunday, it was coupons.  Aaron has such a love/hate relationship with the Sunday coupons.  He came downstairs when he got out of bed, and saw the coupons laying on the table. 

“I’ll do them later, Mom,” he said.  “Don’t you do them!” he added as he went back up to his bedroom.

It wasn’t long until I heard him coming back down the stairs.  “Mom, I’ll cut out the coupons later,” he repeated.

I assured him that I knew that.  Upstairs he clomped……..and soon after, downstairs he came again. 

“Mom!” he said, a little frustration showing in his voice.  “I said that I would cut the coupons later!”

I looked at him with some frustration showing in my face and assured him that this decision was fine. 

“But are you going to do them?!” he asked with suspicion.

And again I told him that I was NOT going to cut the coupons………that it was fine for him to wait until later………that I would just leave them on the table. 

Upstairs again……and you guessed it……..downstairs he thumped.  “I WANT to do the coupons, MOM!  Don’t you do them!!” he commanded in complete exasperation.

There I sat, seemingly the object of Aaron’s anger………but I knew that his anger was really directed at those irritating coupons.  The coupons that he feels compelled to clip because he has clipped my coupons for years, although he doesn’t really enjoy the job anymore.  The coupons that only HE can cut because he tries so hard to cut them directly on each dotted line…….and Mom doesn’t try nearly as hard.  In fact, Mom makes such a mess of the coupons that only I……AARON……can clip coupons!!!

He was so conflicted over those coupons that when Gary came downstairs, unaware of what had been transpiring, Aaron bit Gary’s head off verbally and called him Mr. Bossy.  Aaron got a firm lecture from both Dad and Mom, and in total dismay at this point, he got his two coupon trash cans……..and his very own scissors, the ONLY scissors that he will use for coupons…….and the coupon box………and his fluffy pillow that he sits on…….and his cups of coffee to put on the bench beside him……and he proceeded to just go ahead and cut out the coupons. 

Aaron muttered some select comments as he clipped, but we just ignored him while he settled down.  In the meantime, I was fixing me a bowl of Cream of Wheat in the microwave.  Thinking that just a few more seconds would make my cereal the perfect consistency, I pushed the microwave buttons and turned to do something.  Soon the beep told me that my cereal was finished.  I turned to find this……

What a mess!  It was such a little thing, those few extra seconds.  But the result ruined my cereal and made me have to start all over.

Such is life with Aaron.  Little things to us can be big issues to Aaron, and even though we know this, there are times that we just can’t control the fact that little things happen…….or that these same little things have such a huge effect on him.   We can’t rearrange his thinking all the time, though we do try.  I can’t make 9:30 be 10:15 to him, much as I wanted to on Friday morning.  I can’t make the coupon stress disappear from his mind, though I have tried and tried to accomplish that. 

And so often we end up with an outburst and then a huge mess, like my bowl of cereal.  It’s just 45 minutes, Aaron!  It’s just a few coupons, Aaron!

A few more seconds won’t hurt my Cream of Wheat, I thought…….but it did.  Therefore, I cleaned up the mess and I started over.

With Aaron, a few small things can cause quite an eruption.  We try to instruct……try to understand……try to intervene if possible……try to prevent them in the first place……

But sometimes small stuff happens.  Then we clean up the mess in whatever way is needed, even if it means some discipline.  We try to put ourselves in Aaron’s shoes and get into Aaron’s mind. 

And when he calms down, we start over with a new dish……..a new day……..a new hour.  Waiting for the next outburst. 

Such a little thing……

Unconditional Love in the Storms

A couple weeks ago, Gary and I returned home from church and sat down to eat lunch.  We knew there might be some storms that day, but the view outside our kitchen window was of a somewhat cloudy sky with more sun than clouds.  Soon, though, we heard rumbles and noticed the wind picking up in intensity.  As we sat there, we literally watched a storm forming to our west.  The clouds darkened and built in volume, and the thunder increased along with the lightning.  It was fascinating and awesome to see the changes happen so quickly.  The power was unstoppable.  Soon there was some rain and then hail that pelted our roof and yard.  The storm didn’t last long, but the effects were felt all day as the temperatures decreased by over 40 degrees in a very short time. 

The whole process seemed so sudden to us, but the ingredients for this stormy day had been building up in the atmosphere for much longer than what we saw on the ground.  The storm formed quickly because the necessary storm components were there all along…….far away out west of us, and far up in the sky above us.  We bore the brunt of the strong winds, the vivid lightning, the loud thunder, and the driving rain and hail.  The actual storm didn’t last long but the coldness lingered all that day and into the next.

How we handled the storm and the ensuing hours afterwards made a huge difference in our peace and comfort.  I ran around closing windows while Gary took care of some matters outside.  Later, as the cold set in, we changed clothes and dressed warmly.  Aaron and I put on jackets that evening when I drove him to Sonic for a burger.  Simple matters, yes, but necessary for us during that change.

I’m pondering all this as I’ve had a morning with Aaron.  Those of you who know us through this blog, or through family and friendship, know what I mean by that statement.  Aaron was fine earlier today, but when it was time to go to Paradigm he reacted heatedly with anger and words.  He pounded on a door once, but nothing major, as I talked to him softly and tried to steer him through his anger.  I let him decide what he would do today…….stay home or go to Paradigm.  He knew that staying home had its own consequences, though I didn’t mention them.  He also knew that going to his group had consequences for him as well.  He would have to get out and be around people on a bad day; have to obey rules; have to get away from his computer and maybe go somewhere that doesn’t thrill him.

He eventually chose to go to Paradigm, but he was very much on the edge of a full melt-down.  God gave me grace, seriously, to remain calm and soft with Aaron.  It wasn’t easy.  His words were not nice.  They weren’t aimed at me personally, but they were not good words.  He was coming along as we drove to Quik-Trip and listened to some of his favorite music.  I knew that his ride would be late since we had cancelled earlier, and then changed our minds, so as I pulled into the parking lot I asked him if he wanted a sausage biscuit.  He was surprised at that offer……taken off guard with kindness when he knew that he had every right to expect punishment.  We left the store a few minutes later with his treasured sausage biscuit AND some Skittles.  And a softening Aaron.

As we waited for his ride and listened to more music, I saw that Aaron was having trouble with an itch on his back.  I had him lean forward and I scratched his back.  Then I tickled his back, which he dearly loves, and he calmed noticeably.  He talked and smiled.

“It’s just that I didn’t want to go to Paradigm today,” he said.  I assured him that I knew that as I smiled, and he just relaxed under my hand on his back.  Soon his ride came and he willingly got in their van with his kind staff.  Just a few minutes ago, Barb sent me this picture of Aaron on her couch at Paradigm.  He’s happy with his food and he’s happy with those there that care for him, and hopefully he will have a good day after all.

The storm blew in so quickly this morning.  I literally watched it form in Aaron’s room when I told him it was time to get off his computer.  I know that the storm ingredients were building in his mind for some time, unseen by me but there nonetheless.  I bore the brunt of the storm as I heard Aaron’s words and tensed as he hit the door. 

But how I reacted………how I handled this storm……….made a huge difference in our peace and comfort.  I do not say this to my own credit.  It is seriously the hand of God’s grace reaching down and calming me in the midst of confusion and anger.  I knew what would happen if I yelled at Aaron or if I gave him impossible ultimatums at that point.  It was best to help him work through this process while gently pointing out the repercussions of his decisions. 

And one more thing.  It was a time for me to practice unconditional love for my sometimes impossible son.  Unconditional……..meaning ‘not limited.’  Oh, how hard that love sometimes is!  All of us as parents can attest to this truth.  My love for Aaron is not limited to his good days……..when he makes me laugh and he obeys willingly and is polite and doesn’t even whack me on the back…..much.

Nope.  This unconditional love is for the stormy times like I faced today.  It’s a love that sees Aaron for who he is at these volatile times, and it’s a love that bundles up in the cold that sometimes follows these storms.  It’s a love that gives him a good old “A#1 back scratching,” as my dear dad called them.  I may have felt like giving his back a resounding slap, but the back scratch and the back tickle worked much better……..because it showed love and warmth to my frustrated boy.

I was at an event recently where I saw the long-term effects of a love that has been conditional.  A love based on limits and on who I am, and what I have or have not done.   This sort of limited love produces coldness and pain, not warmth and healing.  It gives no room for forgiveness and growth.  No hope of reconciliation.  How utterly sad………how wasted and unnecessary. 

I don’t want that to be true of me in my relationships with anyone, and definitely not with my children.  All of us parents know a thing or two about unlimited love………..loving our children through the good and the bad……..the pride and the disappointments. 

And those of us with special needs children, especially special needs that cause behavior issues, can attest to how difficult unconditional love can be.  Yet how rewarding to see the results of this love and to know that in the long run, we will reap more through love than through anger and harshness.  Sometimes we need to enforce discipline, but always with love and with forgiveness in store. 

When I fail at this, which I have done more times than I can count, I have the love of my Heavenly Father.  His love is always, always unconditional toward me……….and I’m so very glad that it is, because I blow it so often.   It’s through Him that I have learned what true, unlimited love is.  And through Him alone that I can practice this love…….most of the time………with Aaron.

I hope that the storm is totally gone when Aaron comes home.  I hope the temperatures are warm and the mood is bright.  But if not……

I’ll get out the back scratcher and grab Aaron’s floor pillow and get to work on his back.  No hugs for Aaron but a good back tickle should work.   

And I’ll tell him that I love him, though he rarely says those words back to me. 


Wearing Aaron’s Glasses

Nearly every morning before Aaron leaves for his day group, I clean his glasses for him.  They’re usually covered in finger prints and spots of who-knows-what and smears.  The scratch marks in his supposed-to-be-unscratchable lenses won’t come off, but at least I’m able to get the worst of the gunk off so that he can see again. 

At the end of this past week, as I once again cleaned his glasses, I thought of how I wished I could put on a pair of glasses that Aaron wears that would enable me to see the world through his eyes.  I wish I could so easily and quickly understand and see the way that Aaron does………as easily as slipping on a pair of glasses and having my Aaron vision adjusted.

For two weeks he has been pretty miserable.  He hasn’t wanted to go to his day group on most days, and when he has gone, he’s been a pill.  He’s been vocal and loud, getting in trouble with other clients, and then ending up in tears.  He hasn’t wanted to willingly go on the outings.  And here at home one morning, he threw his remote and broke it.  This is pretty typical for Aaron when he reaches the breaking point.  He’ll break something that’s important to him, not something that doesn’t matter. 

I really think that Aaron goes through these periods because something in his wiring is messed up for a time.  When there is no specific event that triggers these episodes, and especially when they last for longer than a couple days, I feel that there is a disconnect going on………more than usual…….in his brain.  Sometimes a seizure helps, of all things, and he did have one during this time.  But still he continued to be most unhappy.

I also feel that he just can’t tolerate too much stimulus from people and from expectations of him that he feels he just can’t meet.  It’s like he’s thinking: “I just don’t want to talk to anyone.  I want peace and quiet.  I don’t want to go on outings and I don’t want to be happy and I don’t want to be nice.  And I don’t want to be nice and happy because I just can’t accomplish that right now.”

Of course, I could jerk a knot in his tail when we pulled up to meet his ride yesterday morning……….and it’s a new girl I haven’t met yet.  We introduced ourselves, and when she said her name, Aaron blurted out, “Yes, and she’s ugly!!”   He then laughed and laughed while I apologized and tried to get Aaron to do the same.  This gracious (and pretty!)  girl just smiled happily and said, “That’s OK.  It’s just Aaron.”  I could tell that she genuinely understood, as most of the staff does.  We are blessed.

But some of the other clients, who have needs similar to Aaron’s or who just try to be nice to Aaron, are often the objects of his stinging comments……..made in fun, he says.  No, Aaron, you don’t tell Ashley that her dad looks like Darth Sion (or whoever) from your Star Wars game!  And you don’t grab her shoe and tell her to fetch as you throw it across the room……hitting her in the head in the process.  Oh brother!  Why are these things so funny to Aaron?

Yesterday morning, being Monday, saw me feeling tense about how Aaron would handle the fact that it was the beginning of another week……….a Monday that meant he had to go to Paradigm.  He had a great weekend.  He was relaxed and happy, including spending some time in his mulch outside enjoying the warm weather as he sorted out his thoughts.  Maybe that’s why he ended up being in such a good mood yesterday. 

I could tell right away that Aaron was different from the Aaron of the past two weeks.  He lingered in the kitchen, talking happily, which is a good sign that we just might have a pleasant start to our day and our week.  He started talking about how his remote broke, like his headphones have in the past, and how his blinds had fallen down the night before. 

“Mom, it seems like things always happen to me!” he exclaimed.

“And whose fault is that?” I asked him.

“Not mine,” he answered.

“Excuse me?!” I blurted out in my best Mom voice.

“OK,” he said with a laugh.  “Mine.”

He took ownership at that point, but I knew full well that he might have another broken object within the hour if things went sour for him………for whatever reason. 

He was very pleased that he was able to open the kitchen window above the sink for me, all the way up very easily.  “Wow!  You’re strong!” I said. 

“So do I look like I’ve lost weight?” he immediately asked.  He didn’t even mind my laughter as I tried to follow his train of thought. 

He also didn’t mind my laughter as I stood in his room later, his headphones on my ears as I listened at his insistence to the Star Wars music that he says sounds like Indian music. 

“Is the music Indian?” he excitedly asked.  So I asked him if he meant…..and I was struggling…….if he meant Indians like used to live in tepees or Indians from India?

He was struggling, too, as he asked, “Well, is it tepee of Indian or other Indian?”

I laughed and he waited for an answer.

I told him that this music was……….and I was still struggling………was majestic.  There it is.  Majestic.

He had no idea what I meant.  Therefore, I had to come up with an example of majestic and thinking he would remember some of my CDs of the Mormon Tabernacle Choir, I mentioned them as an example.    You know, Aaron, the beautiful music of the Mormon Tabernacle Choir is majestic.

“The Mormon Tackle Choir?!” he asked in disbelief. 

He just took the majesty right out of it.

I mean, a tackling choir……….

I tried to explain and he tried to understand, but really it didn’t matter a lot.  I think Aaron still believes that the music on his game is of some Indian origin.

We go through most of our days with Aaron listening to each other’s explanations and trying to understand each other’s world.  Trying to see through Aaron’s glasses as he tries to adjust his vision to what most of the world expects.  But sometimes he just can’t do that, no matter how often we lecture or how hard he tries.  Thus he reacts with anger and loud words and throwing things that matter to him.  He doesn’t even have the ability to just sit and talk about it……my favorite thing to do, if you ask those who know me.   But not Aaron’s.  Not by a long shot!

Last night at supper, Aaron wanted to monopolize the whole meal with talking about his favorite movie right now.  He doesn’t know how to talk about feelings and issues, but he can talk about his favorite movie for hours.  Finally, Gary told him to quit talking about the movie.  Gary said, “If you would talk about your day…….where you went and what you did and what you ate……..then we would enjoy that.”

Aaron responded, “If I talk about that, THEN can I talk about the movie?!”

Here, Gary.  Put on these glasses.  Maybe they’ll help.

Does That Sound Indian?

Some of you will remember how Aaron used to have some staff at his day group that were African.  I mean, really from Africa, complete with accents.  This, of course, really fascinated Aaron.  He is instantly drawn to anything out of the norm…… least out of his norm.  Over a period of time, most of these individuals went on their way to other jobs.  Therefore I was surprised one day when Aaron started telling me that his new driver who brought him home at the end of the day was African.  I questioned him several times about it, but each time he declared that she was definitely African.  I asked him her name, and he couldn’t come up with that small detail…… African it was.

One day he had me come out to meet her when she dropped him off.  And there behind the steering wheel, grinning broadly, was the most oriental young woman there could ever be.  Turns out she was from Viet-Nam and her name was pronounced “Twe.” 

African, Aaron?  Seriously?  She laughed with delight when I told her where Aaron thought she was from. 

Well, this weekend Aaron is all about another culture.  Indian.  Don’t ask me why.

Unless it’s because he often sits Indian style on his favorite chair in the family room while we watch Wheel of Fortune, or while he watches other programs.   He moans and carries on sometimes when he unwinds himself from the chair after he’s through with his program.  He laughs at his stiff legs and talks about how he likes to sit like an Indian.

On Saturday morning, Aaron was walking around the kitchen “singing” in his rather monotone voice: “Da-da-da-dum.  Da-da-da-dum.  Da-da-da-dum.  Da-da-da-dum.”  Over and over again, until I started laughing.

“Does that sound Indian?” he asked. 

“Not exactly,” I answered.

“It’s from Star Wars Knights of the Old Republic.  Not Star Wars Knights of the Old Republic Sith Lords, but just Star Wars Knights of the Old Republic,” he explained.

I was pondering the Indian/Star Wars connection when he moved right on to pizza.  I tried to follow.

“Mom, have you ever eaten at that pizza place in the mall?”

I told him I had not.

“They have INDIAN pizza!!” he exclaimed with great excitement.

“Really?” I asked

“Yes!!” he replied.  “It has PINEAPPLE on it!!”

Realizing I might be mistaken, but uncertain now of an Indian/pineapple pizza connection, I ventured to ask if Aaron meant Hawaiian.

“Yeah!” he blurted out.  “Hawaiian!”

I didn’t have time to ask him if he thinks that Hawaiians are Indians like I think he means Indian, because he turned to head upstairs to take his shower.  On his way out of the family room, he remembered to tell me one more thing…….about a movie that I don’t care for.

“Mom, Brian at Paradigm likes that movie, but you don’t like that movie.”

I agreed with that last part.

“You’re strange,” he said flatly as he left the room and went up the stairs.

I wanted to tell him that was the pot calling the kettle black, but Aaron doesn’t get those comparisons at all.  I’m not a pot and he’s not a kettle, thank you very much.

Besides, the last time I said it, he looked at me like I was………well………strange. 

Why prove his point even further?  

Talk to you later, Aaron.

Along For The Ride

I wanted to post a quick blog about our dinner yesterday at Chili’s.  We had dinner with Aaron’s special friend, Rosa, whom Aaron calls Rosie………so we do as well…….and Rosie’s parents, Leroy and Louise.  It’s really sweet to hear Aaron’s name for Rosa and to see their friendship.  They are friends according to their way of doing things, which is as unique as they are. 

It’s pretty well a loud and sometimes confusing gathering as we sit there with Rosie and Aaron.  We parents can have some conversation, but it’s constantly interrupted by our “kids” as they want us to tell this or listen to that.  It’s interesting and funny and with Aaron, of course, sometimes embarrassing.  Why does he want to tell Louise that she looks like the old lady on one of his games?  She does NOT!! 

Oh, Aaron.

Rosie grabbed her gift bag from Aaron the instant she sat down, and we laughed at her enthusiasm.  She was very, very happy with the gift of crayons.  Rosie ADORES crayons.  She had talked to me on the phone when Aaron made his usual call from Paradigm in the afternoon, and she had asked if we were coming to her birthday dinner……..and were we bringing crayons?  She couldn’t wait for those crayons, and I laughed as she asked about them.

As we were getting ready to leave the house after Gary got home from work, Aaron ran back up to his room to get something.  He came down carrying a wrinkled picture that he had cut out of the newspaper some time back……a picture of the Ice Age movie characters that Rosie likes.  What a sweet gesture from Aaron, to have cut out and saved this picture for Rosie just because he knows that she loves Ice Age.

This is one of the amazing things about gruff, rough, blunt Aaron.  He loves to share with Rosie, and with other friends.  Sometimes we have to curb that desire on his part because he gives away money and movies and food……….but what a sweet thing for him to want to do. 

In fact, during dinner last night, Aaron got a salad……….and soon he and Rosie were sharing it.

Then after dinner, Rosie was given her ice cream treat from Chili’s……..and she shared that with Aaron as well.  It’s so sweet to see the two of them sharing these things with each other.

But even sweeter is to see them sharing their lives, in the way that they do…….which is not always in the way that we might expect.  That’s because Aaron and Rosie don’t live life the way that many others do……and that’s all right.  They are so special and so individual, and make us smile and look at relationships in a whole different way.  It’s really at times very refreshing. 

After dinner, Aaron and Rosie were both ready to go.  They came to eat, and to give and receive a gift, and when that was done it was time to move on.  Linger over casual conversation after dinner?  Are you kidding?

I was able to take a quick picture of Aaron with Rosie and her parents after we ate.  The instant that the picture was taken, Rosie was off and walking at a very fast rate toward their car.  Louise and Leroy laughed as we all said a quick goodbye, and they took off after Rosie. 

We climbed in our van with Aaron, where he talked about games and movies and anything other than his nice time with Rosie.  But we know that in his own way he was happy with the evening.  He, and Rosie, were just ready now to move on to point B now that point A was accomplished.

It’s not always about the relationship with them as much as it’s about the event.  But they value that time in their own way, and so we as parents value it as well.  We do these things in Rosie and Aaron’s way, for the most part, and sometimes are just along for the ride.

What a ride it is!  But wonderful and sweet……….us sharing their lives as they shared their salad and ice cream.

We’ll do it again in November, for Aaron’s birthday.  He and Rosie have already been planning it. 

We’ll be along for the ride once more.

What Kind of Thank-You is THAT?

This past weekend I was messaging my good friend, Wendy, during a particularly rough time for her.  Elijah, their special son, has been going through some really hard times.  Someday I hope that Wendy will write their story.  If she doesn’t, then I want to do that.  God is setting her apart in order to bless many people someday, even more than she already has.  Anyway, on this particular occasion last weekend I felt compelled to share a reminder with Wendy from Philippians 4:6…….a verse that she knows all too well. 

“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known unto God.”  I talked to her about being thankful even in her very difficult circumstances, even if it’s just to be thankful for the next breath she drew, or to be thankful for a characteristic of God.  She and I messaged privately some after that as I wanted to be sure that I had not offended her.  You see, these thankful issues are something I struggle with often…….especially when the going gets tough with Aaron.

I should have known that God would put me to the test after I so freely gave out advice.  This past week with Aaron was really hard, as I’ve written about in my last blog.  I wanted to chuck it all and just drive off into the sunset more than once.  Man, he was nearly impossible at times!  On his worst day, Tuesday, I was driving him to meet his group when all my advice given became advice that I knew must be taken……by me!

There I was, driving on Maple to meet his group at Quik Trip, and listening to Aaron be verbal.  Not verbal in a nice way, either.  Reasoning with him at that point was futile, I knew.  Plus I was at a boiling point and my words would probably not have been kind.  Then I remembered what I had told Wendy, and I smiled inwardly………a very small smile, mind you.  I knew that the words I had so freely dished out now needed to be on my own plate as well.  “OK, Lord,” I thought, “I’ll try to do what I told Wendy to do.” 

I didn’t feel like being thankful.  I felt like hitting Aaron, to be honest.  But I did thank the Lord for…..let’s see……the beautiful blooming trees that we passed.  And the sunshine.  And the fact that God let me see a new day……dismal as it was……….but back to being thankful.  Let’s see.  I told Wendy to thank the Lord even for the breath she drew, so I did that.  And I thanked Him for loving me and for loving Aaron……because he sure needed someone to love him right now. 

I was reminded of all this earlier this morning.  Aaron, who has calmed down after his awful week, came upstairs to ask me if he could have the remaining coffee…….and would I pour it before Dad and I left for church?  When I went to the kitchen a little later, there was Aaron’s coffee cup already full of hot coffee and creamer.  Gary had already fixed Aaron’s extra cup of coffee.

I told Aaron that he needed to go downstairs to Gary’s study and thank him for fixing his coffee.  Thankfulness is something that definitely doesn’t come naturally to Mr. Aaron.  In fact, saying those two words is very difficult for him.  Aaron knew that drinking that wonderful cup of coffee hinged upon him saying thanks, so he went obediently down the stairs. 

“Dad,” I heard him say.  Then Aaron chuckled and continued, “I expected to get two cups of coffee.” 

So does Aaron really feel like this is a thank you, I thought?

“I’m glad I got another one,” he said……and then rounded the corner to head back up the stairs. 

He looked up, though, and saw me standing at the head of the stairs.  “Did you say thank you?” I asked him.

“I put it THAT way,” he explained….and he lumbered up the stairs. 

He took his hot cup of coffee from the kitchen counter where I stood, and matter-of-factly said before he left the kitchen, “You’re weird, Mom.”

Then up to his room he thumped, trying hard not to spill his coffee. 

And I shook my head, as I do so often, and thought about his comment to Gary.  Aaron’s version of saying thank you was to say that he was glad he got another cup of coffee.  Gary understood Aaron’s heart and he appreciated Aaron’s thankfulness, put THAT way, as Aaron said.

I believe my Heavenly Father understands me and understands Wendy, too, when we try to express some measure of thankfulness while staggering under the load of our special children’s needs……..and their behaviors……….and such a myriad of decisions and emotions that we face so often.  I believe that God understands us when we don’t say thank you right away, or when we say it through gritted teeth and clenched fists.  He understands our exhaustion and our hurt and our feelings of guilt.

I’m so thankful that God is long-suffering and kind.  I’m comforted in realizing that God even understands our thankfulness when it’s put THAT way……..such as saying thank you, Lord, that I didn’t strangle Aaron today.  I’ve thanked God for that more than once!

But God isn’t weird for wanting us to be thankful like Aaron thinks that I am weird.  God knows exactly what He’s talking about.  He knows that being thankful will bring honor to Him, which is our goal in life as a believer, and being thankful will divert our minds from the trap that Satan is trying to lure us into.  It’s a trap of defeat and guilt, which is the last thing I need when I’m already struggling on some days with how I’ve handled Aaron.

The next verse in Philippians says, “And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” 

Ah, sweet peace.  I know that Wendy and I both could use that……..some days much more than others! 

Thank you for putting it THAT way, Lord.


Smoothing the Bent Places

If Gary and I ever doubted that Aaron is on the autism spectrum……and we don’t doubt it…….but if we did, yesterday would have removed all doubt.  It was a topsy-turvey day for Aaron, and for us… of those days when we felt like we were back at square one.  Have we learned nothing over the years?  Yes, we know we have, but Aaron does have a way of making us wonder. 

Aaron has a Star Wars PC game that he hasn’t had on the computer for a long time.  We didn’t remember that it’s one that makes Aaron very excited.  We remember now. 

Gary put the game on Aaron’s computer over the weekend.  Aaron had been bugging Gary about it for days and days.  Of course, now Aaron was happy, happy!  Life was good and life was fun…… long as life consisted of nothing but playing Star Wars Knights of the Old Republic II, Sith Lords.  And be sure that you write the “two” with two capital I’s, Aaron told me over and over as he had me look up various characters on the internet. 

Yesterday when I got up, I noticed that Aaron’s light was on.  He sure was up early, I thought.  And sure enough, later that morning, he came bounding downstairs.  “Mom!” he excitedly said, “I got up at 5:18!!”  He proceeded to tell me that he couldn’t go back to sleep so he got on up… 5:18!!  Of course, he got right onto the computer to play his Sith Lords Star Wars game.  Don’t tell Aaron I wrote it that way because he would correct me.

The day before, I had taken Aaron to the doctor for his required physical.  On the way home, we stopped to buy him some new headphones……and I also let him buy some gum.  He chose Juicy Fruit.  So yesterday morning he said, “Mom, since you got me that gum and bought me headphones, I want you to have a pack of my gum.”  I thanked him but said I don’t chew gum very often…..but he ran upstairs anyway and came back with the Juicy Fruit gum.

He set it on the table and said, “How about you keep it?  Take it to your room and then if you don’t want it you can give it back.”   He was very excited, with his face red and his hands rubbing together furiously the way he does when he’s very animated about something.  So I thanked him for the gum and I said I would keep it.  He was very pleased, and then with his hands still rubbing together, he told me more about getting up at 5:18 and playing his game. 

“I’m actually getting good at it, actually,” he said with great gusto……….and his hands continuing to rub together.  He took his pills and took his shower, and then back on the computer he went.  I began to wonder how the “getting off the computer to go to Paradigm” was going to work.   I was soon to find out.

I knew we might be in trouble when I went into his room later and told him it was time to get off so that we could go meet his group.  “I’m ik-norin’ you,” he flatly said.  I just “ik-nored” him, and a few minutes later went back to his room with the same message.  “I’m still ik-norin’ you,” he repeated. 

Thus began a war of our wills, with Aaron getting off the computer but being very unhappy to do so.  All the way to Quik-Trip to meet his group, he was angry and verbal……..escalating as we drove.  I stayed mostly silent, knowing that anything I said could and would be used against me.  It’s very difficult to turn Aaron around once he is on this path of anger, and words will only make it worse. 

His ride wasn’t there yet, so Aaron got out of the van and went into Quik-Trip to get a snack.  I just let him go.  He returned with more than I knew he could afford, so that’s when he told me that he had taken a dollar out of my wallet.  I could feel my own anger rising.  Hoping to salvage the situation, Aaron eventually reached over to pat my arm and told me that he was sorry.  I did not respond with great warmth, feeling like Aaron just wanted to get his own way and would repeat these actions again……and hoping to teach him a lesson. 

And then, feeling rather mean myself, I told Aaron that I didn’t want the pack of gum.  “No, Mom!” he said, “I want you to have the gum!”  He patted my arm again and insisted I keep the gum, so I talked to him about trust and anger and hurt feelings.  And then he asked the question.

“Are you taking my keyboard out?” he asked…….and asked and asked and asked.  He wouldn’t take anything but a yes or no for an answer, so I told him the truth….yes, the keyboard will be gone when you come home.  This resulted in some yelling, even in the parking lot when his ride came.  I just talked calmly, but Aaron was very upset.  I finally was able to make my escape, and head home….where I removed the keyboard and the game.

Gary and I discussed things and came to a compromise with Aaron later that evening.  No Star Wars game in the morning, but he can have it in the evening.  We told him that he has to get off the game by 10:00 p.m.  And then I said, “Aaron, you need to start getting off the game by 9:45 so that you’re off by 10:00.”  Little did I know.

He spent about two hours going up and down the stairs.  He tried to decide if he would eat and what he would eat.  He watched Gary and I eat, and while sitting there he took my Juicy Fruit gum that he had given me, and he tore the whole pack in two!  He cried.  He let me know that he would love to have another mother.  He paced around the house like a caged animal.  He finally ate some cereal since the food that Mom fixed wasn’t fit to eat.  He let me know again that he did not love me. 

“So if I get up at 5:18 I can’t play the game?!” he said through his tears.  That’s right, we told him. 

“At 5:18 I can’t play the game?” he repeated.  Yes, we assured him.

“So what am I supposed to do at 5:18?” he wanted to know. 

On and on and on about 5:18.

He then continued to pace around the house, affirming his distaste for my cooking…….and for me in general.  All of his anger and frustration was directed toward me.  Gary was incredibly patient and calming, but did tell Aaron firmly that he would never find another mother as wonderful at the one he has.  Aaron did not agree with that……at all.

I just went about my business while Aaron continued to go up and down the stairs, at some points talking through his tears about his great frustration with Mom.  I was really puzzled at his reaction.  Then Aaron declared that he was watching Wheel of Fortune in his room.  “You can watch it in the family room, MOM!” he declared.  “I’m watching it in my room, BY MYSELF!!”  And he did just that.  It was a true sign of his anger.

Finally, Aaron stood in front of me, purposely trying to block my view of the television, and he said, “Mom, you said I could play the game until 10:00 but then you changed it to 9:45!!”  The tears flowed and it hit me.  This is the big reason that he was so upset.  I changed the time.  Fifteen little minutes was totally ruining his life. 

For crying out loud!

So I told him that I just wanted him to start preparing to get off at 9:45, but that he could play until 10:00.  And his face instantly changed.  He was so relieved, and happy, and he smiled and dried his tears, and life was good again. 

Fifteen minutes.  So minor to us… very major and earth shattering to Aaron.  Just like 5:18.  Every minute counts with Aaron.

The rest of the evening was pleasant.  Aaron got off the computer at almost the required time, and even carried the game disks down to us…..teasingly hiding them in his pocket.  He happily got ready for bed, and then as I helped him get his bed ready…….every cover in place in just the right way…….he saw a wrinkle in the cover.

“Mom, wait,” he said. “The cover is bent.”  And I smiled as I watched him very carefully pull and smooth the cover until it was as smooth as could be.

Just as Aaron will not climb under covers that are “bent,” I also know that he will not function well……..if at all………when he sees his life around him as bent.  Gary and I try to smooth, smooth, smooth.  Sometimes I feel like that’s all we do on days like yesterday.  It’s pretty exhausting.

And then we often leave one little area with a wrinkle……bent, as Aaron would say.  So he is off the charts with his behavior and his anger and his distress until we can figure out where the bent place is.  Last night it was that simple 15 minutes, but that is not so simple to Aaron.  He finally expressed it…..YAY!!…..but so often that doesn’t happen. 

The broken pack of gum is my reminder that sometimes we have these very hard days, broken and sad.  But somehow we survive, with God’s strength.  We straighten out the bent places, but we can’t always totally repair the damage… the torn pack of gum.   

That’s when we forgive, and we love.  Always, over and over. 

We love you, Aaron!  Even on the bent days.


The Jail Shirts

I got Aaron a new shirt a couple weeks ago.  He doesn’t like shirts that are too decorative unless it’s something he’s particularly interested in, such as a Star Wars shirt.  Most of the time he wears solid colored shirts, and I have to be sure that there is not much of a collar……if any……because that irritates him.  And if it’s long sleeved, it must have cuffs that will keep the sleeves in place and not drooping down around his hands.  There can’t be an itchy tag, either.  Buying even a simple shirt for Aaron takes thought, for sure!

The new shirt that I bought for Aaron is a blue and orange striped shirt.  It’s short sleeved, so that’s not an issue, and there is no scratchy tag.  Those stripes, though……I wasn’t sure how that would go over with him.  That evening I showed it to him and he immediately took one look at it and blandly said, “Looks like a jail shirt.”  He walked away, and that was that.

I laughed, and knew that I should have expected that flat reaction from Aaron.  He always says that football or basketball referees look like they are wearing jail clothes because of their striped shirts.  And I really know better than to ever expect an enthusiastic, “I love that shirt, Mom!” from Aaron.  I might faint if he did that!

I went back to Penny’s several days later, more coupons in hand, and bought some long sleeved shirts for Aaron…….with cuffs.  No collars.  No tags.  And two of them have stripes, with one having those bolder stripes like the jail shirt I got him.  It’s a different color, though, but still…….stripes. 

This past Friday was a cool day, so I pulled out the new striped long sleeved shirt for Aaron to wear with his jeans.  Of course, he didn’t miss a beat when he saw it.   “I don’t want to wear that shirt that looks like I came out of jail,” he flatly said. 

But wear it he did.  He just had to make sure that I knew he was feeling once again like an inmate.  He wore it to Great Clips as he got a haircut on his way to meet his day group. 

He wore it all day at his group, and to the movies.  And he wore it to Wendy’s that evening as Gary and I took him out to eat as his reward for having a good week and participating in his group’s activities.  He wore it as we took Jackson on a walk around our circle when we got home.  He was happy and made no more comments about wearing a jail shirt.

He changed into his pajamas after our walk, and settled in for an evening of rotating between his computer upstairs and our television downstairs.  I was on the phone with Sandra, Gary’s sister, when I heard Aaron quietly trying to get a snack in the kitchen.  I had already told him that he didn’t need to snack all evening after such a big supper.

Later, when I was off the phone, I went into the family room where he was sitting in his favorite chair watching his program that he had taped…….with his favorite blanket over his lap and his peanut bag and his peanut shell bowl also on his lap.  I sat on the couch and all was quiet for a minute.  Then Aaron spoke.

“Mom?” he said.  “I have to tell you the truth.”

I looked over at him and there he sat, with his head down on his hand, as if the weight of the world was now on his shoulders.  I imagined the worst.  He had done something bad at Paradigm.  Said something or taken something or bought something or given away something……..the possibilities are many, trust me.

It was a pretty serious moment, and I was silent, dreading what was to come.  Our evening had been so pleasant.  Now what were we going to have to deal with? 

I waited.  Aaron deeply sighed.

I waited.  Aaron shook his lowered head that rested on his hand.

I waited.  Aaron sighed again.

Good grief!  Enough with the drama!  Just tell me, Aaron!!

But I was quiet……and still I waited.

Then he looked up and I braced myself for what was to come. 

“I took four ice cream bars,” he calmly told me.

I was nearly giddy with relief, but I did not let Aaron know that.  But all those awful possibilities, and even worse, had vanished.

It was just four ice cream bars from our freezer.   Yippee!!

“So Aaron, how many of the bars did you eat?” I asked as I stifled my smile.

“Three,” he answered.  No more info.

“Soooo,” I queried, “where is the other one?”

“In there,” he said as he pointed down to the cabinet door in the end table beside him.

Ahhh.  Had he heard me walking toward the family room and quickly hidden the ice cream bar?  And then I sat down and he knew the bar would melt……and he was in a mess, in more ways than one.  I took the still intact bar back to the freezer, and then Aaron and I had a discussion about deception and hiding things and disobedience…….and overeating.

All was well then.  Aaron was sorry, and I was greatly relieved that the infraction was only four ice cream bars secretly taken.

But I did think that it was very appropriate that he had worn his striped jail shirt that day……..being the thief that he is. 


What’s in a Kiss?!

Before I write this blog, I need to give a little background on two issues with Aaron.  First, Aaron has a very special friend at Paradigm named Rosie.  I wrote several blogs about Aaron and Rosie, and how Aaron was (and is) so happy about their friendship.  Yet he also had to figure out the boyfriend/girlfriend thing, so we had many discussions about that topic.  It’s been so sweet and so interesting.  I believe that Aaron understands that he and Rosie are good friends, and that their relationship doesn’t have to be anything beyond that.

Aaron and Rosie
Here are three links to blogs about Aaron and Rosie.

The other issue to mention is how Aaron views the delicate word……sex.  He knows there’s something about that word.  He has asked us, even recently, if the word “sex” is a bad word.  We have told him that it is not a bad word at all. 

“Then is sexy a bad word?” he asked.  And we assure him that “sexy” is not a bad word.  We have given him as much information as we think he needs, which is very minimal.  He never speaks of girls as being sexy or pretty.  He doesn’t turn to look at girls in a store or on television, but he does know that some things are inappropriate.  Like one night when a commercial came on with scantily clad girls and Aaron said, “That’s not good for me, is it Mom?” 

Now when we watch Wheel of Fortune and Aaron sees a couple hug or kiss, he softly says, in his monotone voice, “Sexy.”  If a contestant hugs Pat because they won a trip, Aaron once again says, “Sexy.”  Basically anytime he sees two people hug or kiss, I know that I’ll hear that deep, monotone voice very matter-of-factly say, “Sexy.”  It’s really funny, but I know better than to make a big deal out of it. 

So why am I writing all this?  Well, there is a client at Paradigm that Aaron has known for a long time.  I will call her Jane, though that is not her real name.  Jane is 10 years older than Aaron, and is very caring and kind.  Lately she has been extra attentive and nice to Aaron.  She more or less mothers him in many respects, helping him on days that he is sad or angry.  Aaron has had some struggles over the past few months, so Jane has been there with encouraging words and assurances of her friendship.  She is higher functioning than Aaron, so that along with being older has made her a nurturing friend to Aaron.

Aaron thinks that a huge part of his being a friend to someone involves him giving that person things.  He gave Rosie all the crayons in our house over a period of time because Rosie loves crayons.  He loves to bring Rosie snacks and drinks and pictures that we sometimes print from the computer.  And money.  Aaron has given away money many times, not only to Rosie but to other friends at Paradigm as well. 

So lately Aaron has been buying things for Jane with some of his spending money while they’re at Paradigm.  Their deepening friendship has prompted Aaron’s giving spirit to be aimed now at Jane.  One day I let Aaron buy two Gatorade’s at Dillon’s on our way to meet his group.   When he got to Paradigm and handed one of the drinks to Jane, she was so happy that she leaned over and gave Aaron a kiss on the cheek.

Just a little kiss…….but oh, it was not little to Aaron.  It became THE kiss, and quite a topic of conversation when Aaron burst in the door that evening.

“Mom!  I gave Jane a Gatorade and do you know what she did?”

He waited for me to say that I did not know what she did.

And breathlessly……really……he continued, “She KISSED me on the cheek!!”

I assured him that Jane was just being nice……that it didn’t mean anything.

Aaron was not so sure.

“When Jane kissed me, she made me think I’m being sexy.”

Oh dear.

I again said with fake confidence that I was positive that Jane was just being nice………a friendly kind of nice, you know.

Good grief.  How do I explain this?

“So I’m not being sexy?”  Aaron asked.

No, Aaron.  You’re not being sexy.   Jane was just very happy about her drink and she was thanking you.  She’s just sweet that way.

Deep breath.

Well, days passed……..and every single day, Aaron has talked about Jane and how nice she is to him.  I’ve talked to Barb at Paradigm, and I understand that Jane is older and wiser than Aaron…… a good way, HaHa!  And we are sure that Jane is simply being motherly and kind to Aaron.   

On the way to Paradigm yesterday, Aaron started talking once again about Jane…….and THE kiss. 

“Mom, I just wonder……….do I HAVE to be her boyfriend?”

That’s more like the Aaron we know.  Deep sigh of relief………I hope.

No, Aaron, you do not HAVE to be Jane’s boyfriend.  She just wants to be friends and so you don’t need to worry.

This statement seemed to please Aaron.  I’m not totally sure yet, but I think Aaron really just wants to be friends as well.  All this boyfriend stuff is too complicated and confusing to Aaron, it seems. 

At least I hope that’s the case. 

Aaron being sexy?

Oh dear is putting it mildly!