Category: Understanding

It Makes Me Think

I wrote earlier about Aaron’s difficult day on Monday, and about his desire to take a “sorry card” to his friend whom he had hurt.  ( Another “Sorry Card”)  Time now for a quick update.

I walked into Aaron’s room on Tuesday morning, carrying his cups of coffee and finding him sitting on the edge of his bed.  He was writing in his log book the precise time that he was getting out of bed, and still trying to fully awaken.  I know not to talk a lot to Aaron first thing in the morning.  He needs time to process his new day, time to drink his coffee, time to shower…..and I need time to evaluate his mood.  So I said a simple good morning as I put his coffee on the bookshelf beside his desk.  He never even looked at me, which is typical.

But he did speak. 

“I don’t want to go today,” he softly said.  “I have a headache.”

I never know if he really has a headache, or if he’s just trying to get fully awake.  I don’t try to talk him OUT of having a headache, and neither do I encourage him to indulge his headache. 

“I’m sorry,” I said as I walked out of his room.  “I’m getting in the shower now.”

“I don’t want to go today,” he repeated.

“But what about the “sorry card” and Burger King coupon for J, and the pillow for S, and the green pepper for Barb?” I asked.

He was silent.

I went on about my morning.  I heard him taking a shower and then later heard him on his computer, yelling happily…..which is always a good sign that his outlook has brightened.

I went to his room for his glasses so that I could clean them before we left for Paradigm.  There lay the pillow for S, and the “sorry card” for J, near his empty coffee cups. 

“I’m going, Mom,” he said.  He even sounded cheery, and I was very relieved.

We walked out the door later, Aaron carrying a bag in which we had placed the pillow and the green pepper.  His “sorry card” for J, along with the Burger King coupon, were in a plain envelope and placed in the bag as well.

Aaron went into Paradigm with no hesitation when I dropped him off at the curb.  I prayed as I drove away, that Aaron would be happy and kind and would actually give his gifts to his friends…..especially the “sorry card” to J, for that was most important.

That afternoon my phone rang.  The caller ID displayed Barb’s name, and my heart dropped a little.  Sometimes Aaron calls me using Barb’s phone, and some of those times it’s because he’s unhappy.  Sometimes Barb calls me, though rarely, but usually it’s because Aaron is having a really rough day.  Sometimes Aaron also calls just to loudly laugh and tell me how much fun he is having.  Sometimes answering that phone is like playing Russian Roulette.  I just don’t know what pressing that answer button will bring.

“MOM!!!!” Aaron yelled into the phone.  And I immediately knew that he sounded like all was well.  “I wanted to tell you something!!”

“OK,” I simply answered, hoping for the best.

“I’ve been having a good day!” he continued.

“That’s wonderful!” I replied.  “Did you give J the “sorry card” and the coupon?”

“YES!!!” he said.  “WAIT, MOM!!!  WAIT!!!!” he eagerly said.

Now this always means that Aaron is getting ready to hand the phone off to someone else.  Often it’s Barb, and I’ll hear Aaron say to her, “My mom wants to tell you something!”  And Barb knows full well that I didn’t say I wanted to tell her something, so she gets on the phone laughing and she hears me laughing, and we talk for a minute while Aaron – I’m quite sure – is standing nearby rubbing his hands together furiously.

So on this day I was prepared to once again hear Barb’s voice, but it wasn’t.  I heard a young man’s voice haltingly saying hello to me.  He was a little hard to understand, but I figured he was J.

“Is this J?” I asked him.  He said yes.

“Thank you for the card and the coupon,” he said.

“You’re very welcome, J,” I told him.  “I’m sorry that Aaron hit you.”

“Oh, it’s OK,” he replied.  And he said something else about the coupon.  I could tell he was very happy with that, and with the “sorry card,” too.

He handed the phone back to Aaron, who told me with great exuberance that he had also given the pillow to S and the green pepper to Barb.  We soon hung up, with me feeling very happy for Aaron.

As we drove home that afternoon from Paradigm, we talked about how much it meant to J to get the card and especially the coupon.  We talked about how S smiled when Aaron gave her the pillow.  We talked about how Barb thanked him for the green pepper. 

And we especially talked about how happy it made Aaron when he was kind to his friends……how much better he felt on this drive home because of being nice.

These are simple, elementary truths that seem so hard for him to retain.  Aaron wants to be nice.  He really does.  But his impulses and his lack of filters sometimes drive his “nice” desires out of his brain quickly as he responds to the moment.

The next morning, Wednesday, Aaron wanted me to go inside Paradigm when I dropped him off.  He wanted me to talk to S about the pillow he had given her.  Sometimes my to-do list makes it hard for me to agree to anything extra, but something told me that I should do this for Aaron.  So I parked the van and we both got out, walking inside his day group together.

Aaron immediately strode over to the wheelchair where S was sitting, and I followed. 

“S!!!!” Aaron said, rubbing his hands together.  “Here’s my mom!!!!”

I felt like I was Vanna White on Wheel of Fortune.  “Here’s Vanna White and Pat Sajak!!!!!” 

I walked around to where S could see me, and I patted her arm as I told her hello and asked how she’s doing.  S always says that she is fine, as she is all bent over in her chair.  She amazes me as she does something else I always see when I am with her……she smiles.  A huge, sweet smile.

“Did you like the pillow that Aaron gave you?” I asked her.  There was that wonderful smile again as she looked up at me and said a simple, “Yes.”  But her smile said it all.  It must mean a lot to her, in her limited world, to have friends.  I know that Aaron understands that.

One day, when talking to me about his friendship with her, Aaron said to me, “S doesn’t have much friends.  Am I her friend?”  I told him that he is indeed her friend…..a good friend.

“It makes me think I don’t know what to think,” he answered after some thought.

How sweet!  How telling! 

Friendships do matter to Aaron, very much.  He just doesn’t always know how to make them…..how to maintain them……how to express his feelings to his friends without being loud and rough. 

But sometimes he does, like with S.  He talks a lot to us about her limitations and he feels empathy for her.  So even if he thinks he doesn’t know what to think, the very fact that he IS thinking about these things is very positive to us.  We’re thankful that this week turned out so well…..that Aaron hopefully learned some important lessons…..and that those lessons will actually STICK in his brain!!

Because trust me, there are many many days that Gary and I look at each other after an Aaron episode and scratch our heads.

Aaron’s words could easily be our words:  It makes us think we don’t know what to think!!!

But I do think that this week has been mostly positive, for me and for Aaron and hopefully for his friends. 

It makes me think that we have a very special son, even when he makes me think I don’t know what to think!

And that’s just how it is around here.

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Aaron’s Love Songs

It’s been awhile since I’ve really written about Aaron.  So many days I want to write, but somehow life prevents me from doing what I would love to do.  I mean, do we really need clean clothes, food on the table, errands run, garden tended, a somewhat tidy and clean house, etc., etc., etc.?!  Then so much time goes by that I lose my momentum……lose the feel of those special Aaron moments…..and so I go on, hoping to recapture them and share them later.

Aaron and I are coming off of a fun, long Labor Day weekend.  It was sad for me because Gary’s Uncle Bob went to heaven on Friday morning.  This was awesome for Uncle Bob, but of course has left a huge hole of grief in the hearts of those that he loved and who returned that love so deeply.  He was a great man.  As Gary checked the price of plane tickets Friday evening, the realization quickly sank in that we could not both go home for Bob’s funeral.  I was very thankful that Gary did go.  At first he said no to that idea, but he really needed to be there with his family.  He’s so glad he did.

Aaron was my shadow for a large part of our long weekend.  We went out to eat……watched movies here at home…….took walks around our back yard with Jackson……washed and ate garden veggies…….enjoyed sitting on the patio and seeing our Hummingbirds at the feeders……watched Wheel of Fortune……and did a little shopping. 

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And I captured one of the best pictures of Aaron ever as we ate at Jose’ Peppers.  Isn’t this just great?

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On our Wal-Mart trip, Aaron went on his way to the electronics while I browsed some on my own…..knowing that I would probably find Aaron later, when I went to pick him up, with some discovered jewel of a movie in his hand.  Sure enough, that happened…..but I was able to dissuade him from the need to buy it now since his birthday and Christmas are looming on the horizon. 

In his other hand, though, he carried a CD.  Any of you who know Aaron know that he loves music.  He loves listening to music any time that the van door closes and the engine starts.  He becomes super focused……another word for obsessed……with whatever current artist is filling his ears with music.  He will announce every song as the number on the CD changes, then sit back and listen closely.  Then at home he will look their songs up on his computer and love every minute of watching them perform.

When it was Neil Diamond, for instance, Aaron one evening said to Gary, “Dad!  Mom and I are listening to Neil Diamond!  Mom likes number 11!!”  Then he paused, because surely Dad knew what song is #11.  When he realized that Dad was not at all adept with knowing #11, Aaron patiently said, “It’s Song Sang Blue.”  Never mind that it’s really Song SUNG Blue.  Aaron isn’t concerned with grammar.

Aaron continued telling Gary about Neil Diamond.  “He always carries a gu-tar.”   “Why does he like a gu-tar?”   “Is that his favorite instrument?”   “He has funny hair.” 

And later, as he and I played Skip-Bo, Aaron suddenly asked, “Why do you like number 11?  Is the sound of that song kind of cute to you?”  So Song Sang Blue was thoroughly discussed, dissected, analyzed, and hopefully understood after we were done.

Back to Wal-Mart and the CD in his hand.  Aaron loves, loves, loves Ronnie Milsap.  He was totally thrilled as he held out his newly found CD for me to see.  “MOM!!  I found Ronnie Milsap!!!!”

Yes, it was Ronnie Milsap all right……Ronnie Milsap Gospel. 

“Aaron, I’m not sure you’ll like this so much,” I told him.  “It’s gospel music.”

“Please, Mom?!!  Can I get it??” he begged.

So I said yes, and we immediately put it in to play as soon as the van door closed and the engine started.  As the sounds of How Great Thou Art filled the van, Aaron bent over and rubbed his hands together every bit as much as if the Beach Boys were singing about girls on the beach, as Aaron says.

Aaron repeats a phrase of the last song, usually, that we listen to as we drive home.  We hear it over and over and over and over for the rest of that day.  So on Monday, many times, I heard Aaron singing these four words – “How great Thou art.”  “How great Thou art.”  “How great Thou art.” 

And on Tuesday, back at his day group, Barb texted to tell me something and then she said, “Aaron was singing How Great Thou Art earlier.”  HaHaHa!  Isn’t that just the best?  Maybe that’s why he was having such a great day.  And he also took some of our garden tomatoes to share, giving some to his friend Yolanda, a fellow client.  Look at this picture of happiness.

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Last night Aaron wasn’t feeling well at all.  He said his head and stomach hurt, and at 8:30 he wanted to go to bed.  “Maybe I suddenly caught a germ,” he quietly said as he and I went through his bedtime routine.  But he was off, not even asking if it was going to rain or checking on the outdoor temperature, which he ALWAYS does!  He did ask if I would have the monitor on.  I know why.  I know he’s afraid of having seizures, and that just breaks my heart for him. 

Friends and family prayed, and there were no seizures during the night!  I was so, so thankful for that!  Aaron got up this morning after sleeping for nearly 12 hours, saying his head still hurt.  Yet he always says this in the morning, so I wasn’t too sure.  He sat across from me at the kitchen table, giving me a stare down as he hoped I would tell him to stay home.  As the morning went on, he improved.  Coffee and a shower works miracles!  And so did the offer of a Quik Trip stop on the way to Paradigm!

Later, sausage biscuits and Mike & Ikes in hand, we headed down Kellogg on the way to his day group.  The artist of choice now filling the van was Alan Jackson.  Aaron picked up the CD case and said, “Mom!  Look at #5 and #11.  They’re BOTH about LOVE!!!”

So as #11 played, I made a kiss sound in rhythm to the music……and received a resounding whack on my arm from Aaron!!

“What’s up with that?” I asked.  “I thought you liked the songs about love.”

“Well, love is too weird,” he explained.  “When people are in love, they have to kiss!!”

I just smiled.  I can’t change Aaron’s mind about love being weird, but what he doesn’t know is how much he is loved.  He knows it, but he doesn’t know it.  Does that make sense?

Good days……bad days……laughter……frustrations……joy……worry……fun……anger.  We have it all with Aaron, magnified on most days. 

But when we’re feeling like singing “Song Sang Blue” on one day, there are many days that we’re singing a love song about Aaron.  But don’t tell Aaron.  He’ll think it’s weird……and then give us another sharp slap……

And it’s back to “Song Sang Blue!!!”

 

 

Who Is Aaron Supposed to Be?

I love this picture I found on FB this morning. 

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Aaron certainly has opened our eyes to a whole unique and special way of viewing his world…..which becomes our world as Aaron pulls us in, willing or not.  It doesn’t matter to Aaron if I am busy or tired or embarrassed or if I’ve heard or seen the same thing a zillion times.  To him, each experience seems refreshingly new and fun and definitely shared.

Like yesterday at the grocery store.  I decided to run back to the produce section after I saw the pretty cantaloupes in a fellow shopper’s cart.  Aaron loves everything about the grocery store, except maybe for the aisle with toothpaste and body wash.  If you lived with him awhile, you would see that those items are not a priority or an interest of his.  Unfortunately.

Anyway, I was examining big round cantaloupes while Aaron was pointing out the cool, spritzing water that was spraying over the vegetables nearby.  You would think that this was the first time he had ever seen this gentle spray, but it isn’t.  It’s probably the 753rd time I’ve told him what it is, but he was as excited as if he was seeing it for the first time. 

I turned and headed for the registers after deciding against any cantaloupes.  I knew that Aaron was lagging behind.  I was already in the florist section when I turned to look for Aaron.  There he stood, large and loud Aaron, holding up an artichoke.  His face was just a huge smile as he held his prize up for me to see.  I had to smile, too, standing there among the sunflowers and daisies.  What is it about artichokes that always, always grabs Aaron’s attention?  We have examined them, cooked them, and researched them…..but still Aaron will find those artichokes and hold one up for me to see as if it’s the very first artichoke that we have EVER encountered. 

I smiled and then shook my head no as several surrounding people were turning their heads to see who Aaron was showing his artichoke to.  I could see them making the connection……wondering, I’m sure, about Aaron. 

Maybe if we all saw our world through Aaron eyes, we would smile more and laugh louder and keep our curiosity sharper, even as we age. 

So let me share with you a few snapshots of Aaron in his world.

Making a funny face while we played Skip-Bo, trying hard not to laugh:

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Putting a clothes pin on his earlobe, which is totally nothing new…..but you wouldn’t know that if you looked at how intense and serious he was on this night.

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Playing Skip-Bo, knowing that Mom is looking out with eagle eyes for his cheating attempts.

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Waiting for me to go through the Wal-Mart line, and smiling like this when I looked up and saw WHERE he decided to wait……the chair at the bank desk. 

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Noticing after he got his teeth cleaned that the digital clock on the counter was flashing.  “Your clock is destroyed!” he exclaimed as he pushed by his hygienist and tried to fix the clock.  Incorrect time is intolerable!

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Recovering from three strong night seizures.  We had to cancel his therapy appointment, which to Aaron meant cancelling our lunch plans.  I was nervous about taking him into a restaurant, fearing another seizure, so instead we went through the drive-through window at Little Caesar’s and got him pizza AND breadsticks.  He was happy.  I was happy.

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And finally, sunflowers.  Aaron has wanted sunflowers for such a long time, so this summer while I was in Houston to see Andrea, he and Gary planted sunflowers around our garden.  He has watched them grow and grow and grow, until now they are much taller than he is.  Now he can’t wait for them to bloom.  He was looking at the sunflowers one day when they were much smaller.  “When are they supposed to be the size they’re supposed to be?” he asked.

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I smile at the way he phrases things.  His unique way of expressing himself is a big reason I started this blog.  I can remember wondering, when Aaron was much younger, how he would turn out.  In a sense, I wondered when Aaron was supposed to be the Aaron he’s supposed to be – to borrow Aaron’s wording. 

Well, Gary and I pretty well know that Aaron is now the Aaron he is supposed to be.  Some days that can be discouraging, I’ll admit……on the seizure days or on the hard behavior days or on the days when we are tired and really don’t want to see another artichoke.  Yet Aaron is who he is supposed to be because he is who God created him to be. 

But God gives grace when we need it the most.  He really does.  I don’t think I even realize sometimes in just what forms His grace comes to me.  Yet I do know, often in retrospect, that making it through the frustrations……the fears……the failures…..is the hand and the grace of God upon us. 

And I am so thankful that God gives me pause more times that I can count……moments to pause and enjoy Aaron’s world through Aaron’s eyes.

So you see that the sunflower in the above picture is just too perfect.  Aaron is waiting for his sunflowers to be the size they’re supposed to be and to bloom.  Gary and I see that Aaron is who he is supposed to be, and that every day he blooms in our lives, teaching us to see the world through different eyes. 

I pretty well know, too, what Aaron would say if he looked at this sunflower picture.  “What?!” he would probably say.  “That sunflower is wearing shades!!”

Better to see you with, Aaron.  Better to see you with. 

 

 

 

 

My Mom is Weird!

I haven’t done much writing lately for various reasons, a big one being that I had thumb surgery recently.  This clunky splint makes typing a little difficult.  My immobile, fat wrapped thumb keeps wanting to hit the space bar, so now you will understand if you see unnecessary spaces here and there that I don’t catch.   The backspace key is my friend!

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Gary has been taking excellent care of me, and taking up the slack in areas that I still can’t manage.  Even faithful Jackson seems to have been concerned for me at first.  I think now he’s just used to the new me. 

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But Aaron…..dear Aaron……has mostly been worried about……Aaron.  Oh, he’s shown a little empathy.   That’s not really the right word.  He’s shown a little interest in my condition, but showing a great deal of care doesn’t come naturally to Aaron.  But the times that he does express care are special indeed.

He was very happy that he got to stay home on the day of my surgery.  “When you go to take your surgery,” he had asked the day before, “do I have to go to Paradigm?”  Gary and I were at the surgery center very early, so neither of us could drive him to Paradigm.  He loves staying home for whatever reason, so I think he was secretly happy that I had surgery because it did benefit him on that day.

He eyed my left hand suspiciously when I got home.  I knew he was uncomfortable so I just tried to act normal and put him at ease.  But when I laid down in bed in the middle of the morning, he was very uncertain.  He understood, of course, that I had surgery.  But he did not  know how my surgery would affect our normal routine……and therefore affect him, greatly.

I kept the bedroom door open as I rested in bed.  It wasn’t long before I heard Aaron walking up  the hall from his room to my room.  I just kept my eyes closed.  Aaron just stood at the bedroom door, not speaking, but I could feel him staring at me.  He stood there and stared for awhile before he turned and walked back to his bedroom.  He was exhibiting his uncertainty.

It wasn’t very long before I heard his familiar steps once again in the hallway.  He stood once more at my bedroom door for a few seconds.

“What’s for supper?” he finally asked.

I told him there was plenty of food in the frig to choose from so he could have his pick.  It wasn’t really the answer he had hoped for, I knew.  He thought something along the line of pizza or a sub would be far better.  My hand surgery wasn’t working to his advantage as much as he had hoped!

But he was very happy that Gary brought him a cheddar pasta salad when he went to pick up my prescriptions from Dillon’s.  This surgery might work out after all, Aaron thought.

And soon I heard him walking heavily up the hall again.  No need to walk softly when there are matters to address that are very important.  I just waited quietly while he stared at me. 

“Are you watching Wheel of Fortune?” he asked.

No asking how I was feeling.  No wanting to know if he could bring me something.  No queries about my surgery.  And no surprise from me.  Aaron was uncomfortable and he wanted Mom to be Mom again, surgery or not.

I told him that I imagined I could watch Wheel of Fortune.  Later that afternoon, I went down to sit on the couch.  Aaron sighed when I asked him to carry my pillows.  He was seeing that this surgery would take a toll on him and his routine after all. 

We watched Wheel of Fortune that evening, and Aaron was happy.  He didn’t seem to notice my pain pill drowsiness.  He was just very happy that we could have this normal part of our day restored.  He was not so happy, though, to hear that playing Skip-Bo was going to be questionable for a day or two. 

Later that night, Aaron walked with purpose into the kitchen where I was standing.  “Mom!  Here!” he said.  “I brought you something since you had surgery.”

Surprised, I looked in his outstretched hand and saw that he held two yellow gumballs.  He had gotten them from his jar of gumballs in his room.  Usually he tells me I can have one gumball, and on a rare occasion I can have two.  This gift of TWO gumballs, then, was a true gift from his heart. 

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I thanked him and then put them on the counter.  “No, Mom!” he said.  “Hurry and eat it before it becomes tomorrow!”

So I had to smile and I had to “eat” the gumballs immediately.  I didn’t exactly feel like it, but I did chew those gumballs until all the taste was gone as I relished the kindness that Aaron had shown in his own Aaron way.

Life returned to a measure of normalcy fairly quickly.  A couple days after my surgery I even drove Aaron down to Great Clips for a much needed haircut.  As we sat in our chairs waiting for his name to be called, I showed him how I was to exercise my fingers that were protruding from my splint.  I tried to be funny as I bent my fingers, saying “Up, down, out, in!” as I bent them back and forth.  I should have known that Aaron wouldn’t appreciate my humor.

“You’re weird, Mom!” he said.  And then he looked toward the hairdressers and very loudly said, “My Mom is weird!!  She had surgery and she’s weird!!”  What do you do when all eyes turn to you and your son?  Laugh!  And hope they don’t agree with Aaron!

Aaron has done really well with this whole “Mom had surgery and she’s weird and I want things back to normal” business.  He has actually been helping with carrying and setting the table and bringing in trash cans and other things, much more that I thought he would.  He had a very grouchy week at his day group last week, though, and I don’t know if all this was part of why that happened or not.  Sometimes we just don’t know with Aaron.

And we have been playing Skip-Bo again.  Gary shuffles the cards for us and off we go!  Aaron sometimes acts like his silly self.  See the clothes pin on his ear?

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But he plays with the intent to win, realizing that Mom still can watch for cheating even with a splint on her hand!

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The other night he once again strode downstairs to find me on my computer.  “Here, Mom!” he said.  “I saved this for you.”

I looked at his bowl that he held toward me and saw it.  One lone little fruit gummy for me to eat. 

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It’s not the size of the gift that matters, but the heart behind it.  It’s true not just for Aaron, but for all of us.  Sometimes I have to look hard for Aaron’s gifts, but they are there, sweet and honest.

Brutally honest sometimes (weird Mom!)………but that’s Aaron!

 

 

 

 

 

Giving Away Kindness…..Aaron Style

In the last blog I wrote about Aaron, I talked about how much it means to us when others treat him with kindness.   Simple Kindnesses   Even the smallest kindness shown to Aaron is just huge to us, and to him. 

On the flip side of kindnesses being shown to Aaron is the issue of Aaron showing kindness to others.  Sometimes we’re happily surprised at how Aaron will be kind to others.  Sometimes we’re sadly embarrassed at his total lack of kindness.   We never know what a day will hold.  We never know what an hour will hold.  We actually never know from minute to minute what Aaron will display toward others. 

Aaron is pretty self-centered, which is common for those with Asperger’s.  Empathy doesn’t come naturally to him most of the time.  For instance, if I’m crying it makes Aaron either angry or scared.  He doesn’t ask what’s wrong or ask me if I’m OK.  Instead, he might make fun of me or get very agitated.  I know that about him, so I try to never let him see me cry.  I can’t invent that sort of empathy in Aaron, try as I might. 

Therefore, when Aaron shows that he cares about someone, those of us who live and work with Aaron are delighted.  I wrote a few months ago about how I saw Aaron walking to Quik Trip with his day group.   Pictures of Kindness   He purposely waited to be the last in line so that he could walk with his friend, S., who is in a wheelchair.  It melted my heart to see that about him. 

We make it a purpose to help Aaron see practical ways that he can be kind.  For instance, when we eat out I make sure that Aaron always says thank-you to our server.  The same goes for thanking those who help us at Wal-Mart or the grocery store, Great Clips, or anywhere else we go where we receive assistance from others.  I don’t think Aaron would do that by himself if we didn’t remind him over and over to do so.  Verbal kindness is very important to all of us, and we want Aaron to be verbally kind to everyone.  Trust me, sometimes his verbage is anything but that, yet we have to keep reminding and reminding. 

A couple weeks ago, when I went to pick Aaron up at his day group at the end of the day, one of his staff came out to tell me that it was a rough day with Aaron.  I still feel like the parent of a disobedient, still learning kindergartner on those days.  Yet we need and want to know what’s going on so that we can help deal with it and address it at home.  A couple days later, this same staff headed for my car as I waited for Aaron.  Aaron ran behind her, all smiles, and opened the passenger door with gusto as I rolled down my window to talk to Melinda.  I was dreading what I would hear, but right away I was all smiles like Aaron as I listened to Melinda tell me that Aaron was awesome and wonderful and fabulous, and all other sorts of affirming adjectives.  I think I was happier than Aaron was to hear those words! 

And there on Melinda’s shirt, like a name tag, was a note that she pointed out to me…….a note that Aaron had written.  It said, “Melinda is cool.”  She was wearing it with pride, all the while confirming to Aaron that sweet behaviors bring sweet rewards of praise and smiles.  Aaron had written a note to another staff that day as well, on her calendar.  It was just extra sweet and funny.

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At his day group, Aaron also loves to give things away.  We’ve really had to work with him to quit giving away his money.  He’ll give others candy, gum, fruit or sliced veggies from home, whole cucumbers or squash from our garden that he has sometimes hidden in his shorts pockets…….you name it, Aaron has probably tried to give it away at one time or another.  And while that’s nice, there are times we have to draw the line and say no.

There are times that helping Aaron to be kind doesn’t necessarily work into my schedule, but I have to remind myself that he needs help with carrying out some of the things he really wants to do.  For instance, a couple weeks ago he wanted me to bring Jackson with us when I dropped Aaron off in the morning at Paradigm.  I wasn’t really in the mood to do that, but finally I agreed and off we went, Jackson sitting on the seat in the back of the van looking all around and Aaron happily talking in the front seat.

Once at Paradigm, I attached Jackson’s leash to his collar and we went inside.  The other clients love Jackson, so he was received with lots of petting and hugs.  But the one person that Aaron wanted the most to see Jackson was his friend S., who is wheelchair bound and bent over with her disease. 

“Mom!!  Come over here and let S. see Jackson!” Aaron loudly told me from across the room. 

So I took Jackson over to S., and I was so happy to realize that big old Jackson was just the perfect height for S. to just reach over and pet his head.  She doesn’t move well, but Jackson was able to stand there and let her pet him easily.  Aaron stood there rubbing his hands together the way he does when he’s very happy, his face just one big smile.

And the smile on her face was worth every single extra minute it took me to bring Jackson with us that morning.  I left there later with a huge smile on my face that matched hers……and Aaron’s. 

Aaron has also shown kindness to S. by giving her food.  He has told me that sometimes he has to put it in her mouth, and that it seems weird to him to do that.  But then we talk about her limitations and I remind him that he is being a true friend to her. 

He is also sad when he sees her sitting alone.  I’m not there to see how much time he spends with her, but he has said that he does talk to her sometimes when she’s alone.  It makes Aaron sad to see her lonely, and it makes us very glad in that case to see Aaron sad.

One other thing we recently did was to make cookies for Aaron to take to his friends.  It was a week ago on Sunday afternoon that we made the cookies after I suggested it to Aaron the day before.  He was very happy about this idea.  I had him help measure and pour and scoop so that the cookies were genuinely from his hand.

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He enjoyed taking them the next day and sharing them, giving the whole bag with the remaining cookies to one of the guys when I picked him up that day. 

However, we got an incident report concerning the cookies, too.  I think Aaron wasn’t so nice sometimes with sharing his cookies.  This is so typical.  I can’t let it stop us from doing this nice gesture that others enjoy, but it is discouraging sometimes to see Aaron take something good and make it an ugly issue.  We’ll talk about it during our next baking session, and I’ll drop Aaron off that morning hoping and praying that he’ll be nice to everyone and share equally. 

It’s all a lesson to me on how we can’t give up on Aaron.  We have to keep reminding……and training……and instructing…….and teaching…..

And putting ourselves out there in order to help Aaron become the young man we want him to be, at least most of the time.  We can’t expect it all of the time, but we can’t quit trying. 

Parenting never quits for any of us with children, but with our Aaron the parenting REALLY never stops.  Other special needs parents can certainly agree to that. 

May as well make cookies, right?  And be sure to eat some while they’re warm!    

 

Simple Kindnesses

I was at Aldi the other day, having finished my grocery shopping and unloading my groceries from the cart to the back of my van.  Now, if you know anything about Aldi you know that in order to get a shopping cart you must insert a quarter into the cart slot.  Your quarter releases the cart chain and you then have your shopping cart.  When you’re all done, you simply return your cart to the cart holding area, insert the chain, and out pops a quarter for you to take.  You never see random shopping carts littering the parking lot, and you never see an employee pushing a load of carts back to the cart area.  That’s because everyone returns their cart in order to retrieve their quarter.

So there I was, empty cart in hand, when I saw a woman walking in my direction.  She was on her way to do her shopping, her quarter in her hand.  I offered her my cart and she then offered me her quarter, but I did what many other shoppers do…….I told her to just keep her quarter and she was welcome to the cart.  Now you would have thought I had offered to save her $25.00 rather than just $.25.  She was so appreciative, and she said that she would pay it forward to someone else.  I know that Aldi shoppers do this all the time, giving fellow shoppers their empty carts without taking their quarter.  As I got in my van I was all smiles, just like the woman was who now had my cart and still held her quarter.  I thought of what a simple deed that was and yet how very happy it made that woman, and also how very happy it made me.

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Showing kindness can be such a simple act, yet can have such profound effects on the person to whom the kindness is given.  Most simple acts of kindness take no pre-planning or preparation at all.  They simply take an open heart and an eye for opportunities that come our way.

I’m always so thankful for those who show extra kindness to Aaron.  It means so much to me as I’m out with Aaron to see those who show patience and respect for him, even if he’s standing there talking to them about aliens or a computer game or whatever else is in his head……while he might be rubbing his hands together in excitement……or scratching himself inappropriately…..or laughing loudly.  Most people don’t know what to do in that situation but there are those who seem to just be gifted with a special understanding of our special son.

There’s the manager of our nearby Subway, whom I noticed has a knack for focusing on Aaron as if he’s all that matters to her at that moment.  She is completely relaxed with Aaron, and when she told me that her mother worked with special needs and she grew up with those individuals in her home, then I understood.  She asks Aaron what he wants to eat, not asking ME what Aaron wants.  She was on her break one day, sitting in a booth trying to eat her supper, when Aaron spied her and remembered that she paid attention to him.  He stood there talking about the latest movie he had seen, and she just looked up at him and listened as if he was discussing the very most interesting and important thing in the world.  She answered him when he asked her questions.  She made him feel that what he said was valuable.  I wanted to kiss her!!!  But I knew that might be taking it a bit too far!  🙂

There’s Shelly, the hygienist at our dentist’s office who cleans Aaron’s teeth.  We have Aaron’s teeth cleaned every two months.  Shelly should get a medal.  She is very patient with Aaron and knows just how to handle his desire to talk or to stretch or to push the instruments out of his mouth.  Look what she let Aaron hold at his last visit.

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This kept Aaron’s hand occupied and gave him something to think about other than what was going on inside his mouth.  Perfect!!

There was the girl at the theater snack counter this past Sunday.  I thought Aaron was right behind me as I bought our tickets, but I turned and he wasn’t there.  I went to one side of the snack area, but there was no Aaron.  I finally found him on the other side, and by this time he was not in a line but was right up at the counter where a young woman was waiting to take his order.  Aaron saw me and yelled, “MOM!!” as I hurried over to where he was.  The first thing I did was to ask the young woman if Aaron had pushed ahead in line and she assured me that he had not.  I knew instantly that she understood.  A mom just knows.  Relief washed over me as she asked Aaron what he wanted, looking him in the eye, and smiling at him with kindness and not with uncertainty.  She just had a wonderful way about her with Aaron, treating him with calmness and with great ease.  I wanted to quickly thank her specifically for her kindness to Aaron and maybe ask her about her background, but by then Aaron had moved on and was trying to stuff a huge wad of napkins in his pocket and locate a handful of toothpicks, so I had to run.  I’m sure she got that, too.

This encapsulates exactly what I’m trying to say:

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I just love it when somebody treats Aaron like he’s a somebody……because he certainly is a somebody.  He’s special in his own right, and not just a person with special needs.

It doesn’t take someone doing some huge thing for Aaron, like taking him on a two month vacation trip…….although if you want to do that, I might say yes.   No, just like my Aldi cart and the quarter, the kindnesses that mean the most in my everyday life and in Aaron’s everyday life are the “small” kindnesses.  These acts in their everyday hues are really enormous bursts of color to me and to Gary and to Aaron.

Each of us can do the same for everyone that we encounter.  The littlest gesture can lighten a load in others that we don’t even see or know about.  It’s never a small thing to be kind.  We have no idea of the lasting impact a word, an action, or a smile can have on those random people that come across our paths every day.

There’s another aspect to kindness that we have with Aaron as well.  It’s about our efforts to teach Aaron to be kind.  On some days he acts as if he’s never heard the word, but on other days he amazes us and others.  I’ll save that for the next blog.

Aaron does give me plenty of material to write about, after all!

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!

Do You Wanna?

I hear it all day long.  I’m not exaggerating.  Honest.  At least all the part of the days that Aaron is home I hear it over and over.

He walks into the kitchen or wherever I am in the morning.  Most days he begins his first of many words during the day with these words.  Or if they are not the first words out of his mouth, they will be close to first.

“Mom, do you wanna…….?”

And then he often stops.  He just stands there, thinking of how to fill in the blank after “wanna.”  I used to ask what it was that he wanted, but I’ve learned to just wait.  And many times, really, he doesn’t even complete the sentence.  Sometimes it’s because this question is just a habit with Aaron.  Sometimes he just asks it in order to get my attention.  He asks without even a plan in mind as to how to finish the sentence.  Other times, he does have a motive.

“Mom, do you wanna play Skip-Bo tonight?”

“Mom, do you wanna watch The Incredible Hulk tonight?”

“Mom, do you wanna take Jackson on a walk?”

“Mom, do you wanna take me to Dillon’s?”

“Mom, do you wanna give me extra money?”

I could continue for a long time filling in the blanks to “Mom, do you wanna……?”  Just like Aaron does.

But really, a majority of the time Aaron never finishes his question.  It’s like the unfinished conversation cloud hanging over his head in a comic strip, waiting to be completed but never is.

All parents know that repetitive questions from young children can be tiring.  So it is with me and the “Mom, do you wanna……?”  But it’s not just that it’s tiring to hear it all the time.

I’ll admit that I sometimes get weary of being the usual object of his question.  I know however he fills in the blank….the long pause….it will somehow involve me.  I can no more than pull my chair up to my computer after a tiring day and I soon hear Aaron’s loud thumping down the stairs from his room.  Thump, thump, thump down the first flight of stairs.  Is he going to stop in the kitchen for a snack and go back to his room?

Nope!  Thump, thump, thump down the second flight of stairs……where he then stands behind me and stares at my computer screen, maybe loudly chewing gum.  And I wait, usually not very long.

“Mom, do you wanna…….?”

So honestly, at that point, I feel a little put upon.  No, Aaron, I do not wanna…….

I might be tired physically at the end of the day.  But there are many times that I’m tired in spirit.  Like I said, tired of being the one that Aaron comes to as he fills in the blank after “do you wanna……”

It’s a normal parent emotion, that conflict between loving your child totally yet needing some space.  But when your child is a grown man and he has special needs, the emotions of spirit tiredness can cause great guilt.  I have nice breaks from the responsibility of Aaron while he’s at his day group.  I’m very thankful for that.  Yet there are times at home that Gary and I both feel the weight of being caregiver and companion to our Aaron.

My friend, Wendy, recently wrote about this on her Care Page that she has for their son, Elijah.  Elijah, who prefers to be known as Mr. Speedy, has significant special needs.  We’ve been friends with their family for a long time.  Dan, Wendy, Jeremiah, and Elijah even came to the NHRA race at Topeka to see us and Andrew.

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So read what Wendy said:

As I read my text back to myself, ” E and Me…” I think how I often I write those words. I smirk to myself with a light heart; yet heavy sigh and realize this is my life, my calling, my journey. As the rest of the kids move on and become more independent, E and me are the constant. You can be sure you never have to wonder where E is for where you find (mom) me, you find E.

 How could I ever feel lonely? I have Jesus and my super hero, Speedy, making every day a story to reread. Something about the days with my Super Speedy give me a reason to giggle and reflect on how wonderful life is with my special E. His world is heavenly; childlike and simple; the way the Lord wants mine to be.

Wendy’s sweet, powerful words did me good.  Really good.  Often, seeing life through another’s similar eyes is just what I need in order to see my life more clearly.  As Wendy said, sometimes our lives are very childlike and simple, kept that way by the lives of our boys.  I may at times sigh and wish it wasn’t so, but it is.  And there is joy in that simplicity, even on the hard days.

Maybe I need to fill in the blanks to Aaron’s constant question more often. “Mom, do you wanna…….?”

Aaron, I wanna see you healthy and safe.

Aaron, I wanna see you enjoy life.

Aaron, I wanna see you as happy as you are when you find your favorite “croysants,” as you call them.

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Or as happy as you are when you always, always stand in the back corner of the elevator at the doctor’s office……so you can feel the movement better.

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Aaron, I wanna capture your ability to experience life’s simple joys with great delight, just as much as if you were looking at the Eifel Tower or the Taj Mahal.  A lady bug, a dandelion, a frog, a song……they still tickle you to pieces.  That’s a gift!

Aaron, I wanna continue to be your favorite Skip-Bo partner……even when you cheat, and you laugh when I say, “Cheater, cheater – Pumpkin eater!!”

Aaron, I wanna count my blessings with you instead of numbering some things as burdens.

And when I feel burdened, I wanna take it to my Heavenly Father before I unload on you.

I wanna count it all joy, and know that when I don’t, God understands and He has new mercies every morning…..new yet unchanging.

Just like something else that’s unchanging.

“Mom, do you wanna…….?

 

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.

A Nightmare and a Flower

3:30 a.m.  I heard Aaron stirring, then walking up the hall to the bathroom.  He closed the bathroom door with a thump because he never, ever closes doors quietly.  Soon the bathroom door opened, but instead of walking back up the hall to his room I heard our bedroom door open.

“Mom?” Aaron said in as much of a whisper as he can ever muster.  Whispering seems to be a lost art with him. 

“Mom?” he repeated.  I answered him and he continued.

“Can you come to my room?  I need to talk to you about something.”

So I followed Aaron to his bedroom, where he wanted to turn on the light so that he could talk better. 

“Mom.  I had a nightmare.  I dreamed that you and dad made me go live in a support home because I was mean.” 

So that would explain what I had heard him speaking in his sleep earlier……something about wondering if someone would come up to his room to see him.  We talked about his nightmare, as he called it.  He has such a fear of ever having to leave our home.  No matter how we approach that subject it never goes over well.  But we hadn’t talked about it at all the night before, or even at all recently, so I don’t know where the dream came from.  But it greatly bothered Aaron, enough for him to call it a nightmare. 

We talked for a few minutes and I assured him that everything was fine, and not to worry about us making him move because he was mean.  But it is important not to be mean, I had to add.  And with that I made sure he was all the way in his bed, said goodnight, and turned off his light.

He was up before 8:00.  He walked into the kitchen looking a little worse for wear.

“Mom,” he immediately said.  “I don’t feel good.  My head hurts.  I feel weak.”

I tried to encourage him, but finally he brought up the real issue of the nightmare.  He decided that this awful experience should earn him a day off from Paradigm, but he saw right away that I disagreed.  I exuded cheerful optimism, which he tired hard to override with his dreary post-nightmare pessimism.  We were in that familiar tug-of-war. 

A shower and three cups of coffee helped a little, but Aaron had decided that he was not going to Paradigm.  I always leave the final choice up to him, but he knows the consequences of not going.  I told him that we would run down to get him a haircut, which he loves, but after the haircut he was still pretty firm about staying home.

I agreed to take him home and then told him that I was running my errands.  After that, I said, I would be busy all day getting ready to leave tomorrow on an out-of-town trip for Gary and me.  By the time we pulled into our driveway, he was happier and I was on the phone.  He opened his door and in a flash, my door opened and there stood Aaron……holding something for me.

“Here, Mom!” he tried to whisper.  “I picked you this flower.  I picked it because I love you and I’m going to Paradigm.”

Then he handed me the flower, bent over to lean in the van, and gave me a HUG!!

You could have blown me away!!  Kind of like the little seed pods on the flower he gave me.  You see, his “flower” was this:

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But he was as proud of this old dandelion as he would have been if he was holding a dozen roses.  And trust me, I was too!  This bent over, half bald seeded dandelion was what Aaron saw first and so pluck it he did……for Mom!

After I got off the quick phone call, I thanked and thanked Aaron for the flower.  He just beamed.  He got his glasses and his watch and his wallet, and off we went to Paradigm.  I think his morning there was a little tricky, but the rest of the day seemed to go well. 

It’s a good thing I don’t have allergies, because I’ve kept my special flower in the kitchen all day.  It’s nothing spectacular, but it’s the best Aaron had.  It would have been understandable for me to not want this sad sample of a flower.  To maybe throw it away when Aaron wasn’t at home. 

But I keep thinking about how the best Aaron had to give me was…..well…..not what we would call great, but it was from his heart and that makes it totally awesome.  That’s so often what Aaron does and is, all through the days of his life.  We may not get exemplary behavior every day…..we may not see stellar progress on most days…..we may not even take the time to notice how hard he tries on other days.

But for Aaron, it’s there.  His attempts to fit in, to express himself, to understand this world we live in with him, are there.  Some days the best we get is for him to ask if I’m happy that he didn’t make “farting noises” with his mouth in the store, but he made “meow” noises instead.   Or that he didn’t clap SUPER loud or clap too AWFULLY many times.  Or that he didn’t get 10 toothpicks at the welcome counter at the restaurant…..only 4! 

He so wants us to be proud of him.  He so wants to conquer his inability to communicate what’s really on his mind…..what’s really bothering him……what’s in that heart of his.  But it’s just so nearly impossible sometimes for him to do that……to talk like you and I do.  He might react, like he did this morning.  He might hit or slam a door or be defiant.  But I’m convinced that part of the frustration that Aaron feels is not that he’s mad at the situation….he’s mad at how very hard it is for him to identify and express to us just what he’s mad about. 

So whatever he is able to share, we must take it gladly and try to understand.  We must grasp what he hands us and take care to handle it well.  Just like my dandelion flower.  Would I have chosen it?  No.  But Aaron did, and with it he showed me his love.  To me that gangly old dandelion is beautiful.  It represents Aaron’s heart. 

I hope that when he sees it sitting on the table, or maybe later in a vase, he’ll know that Mom not only loved his gift……he’ll know that Mom loves HIM. 

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