The Rat

It all started one recent night when our almost-broken DVD player became the totally-broken DVD player.  Aaron and I were watching the next Blue Bloods show that was in Aaron’s rigid schedule for the evening.  Aaron kindly paused the program while I went into the kitchen.  Something about that pause became the something that pushed our ailing DVD player into its grave.  Even Gary, our go-to he-can-fix-everything guy, came but could not fix.  And as I watched Aaron’s frustrated reaction, I rightly guessed that he would also be very difficult to fix that night.

I was very correct on that one.

There are times when Aaron handles life’s interruptions of his routine with amazing calm and grace.  That night was not one of those times. 

I didn’t help, either.  When Aaron became more belligerent, I became more frustrated.  I don’t do end-of-the-day meltdowns very well, especially as I get older.   I finally told Aaron not to be a bully.  But I didn’t end there.  I also told him not to be a bully brat.  I thought it had a nice ring to it, you know. 

Aaron did not think it had a nice anything.

Now we not only had to go to bed without finishing our Blue Bloods show, and knowing that the DVD player was dead, but we also had to walk up our stairs for our goodnight routine harboring anger.  I could have made amends and gone right to bed with no problem. 

Aaron could not.

And so began an age-old bedtime dance that we hadn’t done together in a long time.  It basically consisted of Aaron refusing to do what is normally done and insisting on doing what is unacceptable. 

His angry comments included: 

“I am NOT helping put the oil in the diffuser!”

“I am NOT taking my medicine oil!”

“I am NOT saying goodnight to you!”

“I am NOT going to bed!”

“I am NOT letting you kiss me goodnight!”

“I am NOT a bully brat!”

I stayed as calm and flat as I could be in my reactions as I went about my own bedtime routine.  Aaron continued his fuming by going into his room and closing his door, only to open it seconds later.  He would stomp up the hall and come into my room, hurling another angry comment at me.  One time he closed his door normally, but immediately reopened it so that he could slam it shut the second time.  I had to smile at that one.

But I wasn’t smiling at any of the rest, for sure.  I was sorry it had come to this…I was very tired…and I was totally aware that Aaron’s outrage could continue for some time.  Therefore, I just went to bed, pulling my covers up and acting as if everything was normal.  Gary had not come upstairs yet, so I left my door open. 

Sure enough, Aaron clomped up the hall again and came into my bedroom.  He didn’t even seem to blink as he saw me in bed and so changed his direction, standing on Gary’s side of the bed.  He glared down at me under the covers and continued his verbal barrage.  Then he was off, slamming his bedroom door before soon reopening it, and repeating the same action again and again.  In my bedroom, hovering over the bed as he angrily talked, and off again.  I don’t even know how many times this occurred.

Then all of a sudden, the next time Aaron hurried to my room to glower at me, he didn’t.  He didn’t hover and glower, but instead he sat on the bed beside me.  He started rubbing his hands together and then he said, “Mom, do you know what Nanomites are?” 

Really.  Nanomites.

And just as seriously as I possibly could, with no hint of surprise or laughter or tiredness,  I told him that I did not know what Nanomites are.  There we were, in the dim light, talking ever so diligently about Nanomites.  We didn’t talk about our anger…our hurt…our frustration with each other…our disappointment in the dead DVD player…or our needed apologies.  We talked about Nanomites.

And all was well. 

Aaron went back to his bedroom.  I stayed in bed, waiting.  Soon he was headed back up the hall, but this time he came around to my side of the bed.

“Here Mom,” he said.  “I want you to have this.”

A couple days earlier, I had taken Aaron to Dollar Tree.  You would have thought I had let him enter heaven for a few minutes.  He bounced from aisle to aisle, SO excited by his many finds, but definitely the MOST excited by this big, plastic, long-tailed, red-eyed rat! 

WP_20180924_16_29_48_Pro

I rolled over in bed that night, and there on my night stand was that long-tailed, red-eyed rat.  I knew as sure as ever, then, that things were right with me and Aaron.  He had given me what at that moment was most precious to him…his black, plastic rat. 

WP_20180928_10_53_01_Pro

He laughed and bent over as he rubbed his hands together…a sign of his pure joy.  And I thanked him.  I thanked him as sincerely as if he had placed a huge vase of roses on my night stand.

Aaron wanted me to come and say goodnight in the way we always do, so I did.  Then as I was in my bathroom right after that, I heard Aaron once again walk up the hall.  He knocked on the bathroom door, and when I answered he said, “Mom, I’m sorry.”

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

“I love you,” he mumbled as he hurried off and back to bed.

I kept that ugly plastic rat on my night stand for a couple days.  It reminded me of so much.  It was an unusual picture of my relationship not only with Aaron, but also with God.

How many times have I been angry with God over a problem or a situation in my life?  Maybe not even full-blown anger but frustrated and not trusting Him totally.  How many times have I held onto hurt, or worry, or fear, or whatever else it may be that I want to harbor close to me.  Things or people or events that I don’t want to relinquish to God? 

All the going back and forth with God doesn’t accomplish a single thing.  It’s only when I yield to Him and to His control in my life, tell Him I’m sorry if I need to do so, and then give Him my thing that to me is precious…that I want to keep and coddle…only then will I have true peace.  Also, only then will I have open communication and sweet fellowship with God again.  Only then will I see what’s on the new path upon which He has set my feet.

Who knew what that silly red-eyed black plastic rat would teach me? 

Leave it to Aaron…and to God…to take the bad times and make them full of good.

 

 

Happy, Helpful, and Forgiving

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

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

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

“Aaron!” I said.  “Come back here!”

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

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

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

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

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

“HEY!!!” he yelled out. 

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

WHEW!!!!

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

OK, where was I?

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

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

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

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

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

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

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

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

I hurt Aaron’s feelings. 

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

This prompted a stern rebuke from Gary.

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

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

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

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

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

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

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

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

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

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

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

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

He stared at me a minute.

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

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

WP_20180516_21_45_25_Pro

 

I’ll Be Your Friend

I pulled up to the curb in front of Aaron’s day group yesterday, a little early to pick him up at the end of his day.  Soon Aaron walked outside, heading toward the van, followed by Barb.  Barb is like Aaron’s second mom.  She is also a manager at Paradigm.  Sometimes Aaron wants Barb to come out to talk to me so that she can tell me something fun about Aaron’s day.  However, fun was not part of our conversation on this day.  I realized this right away as I looked at the tears on Aaron’s face when he sat down beside me in the van. 

“Mom!” Aaron choked out through his tears.  “Natalie got mad at me and called me…….”  And on and on he talked, his voice thick with emotion and his hands rubbing together in frustration. 

Aaron loves to give his money to his friends, especially to Natalie, and it’s sometimes a real problem.  Aaron isn’t supposed to give away his money, and Natalie isn’t supposed to ask him for money, and when they are found out, it can be touchy.  Both Aaron and Natalie have trouble controlling their emotions when things get stressful, which certainly happened yesterday.  Words spill out…tears are shed…accusations made… 

If you close your eyes, and if the voices were far younger, you would think that once again we were on the school playground trying to settle a spat between two kindergartners.  But these are two adults, who because of their special needs happen to, at times….many times….still operate as little children. 

Aaron was being very dramatic, which showed me how much his giving heart was hurting.  He had done wrong and tried to deny it.  Natalie had done wrong and got very mad at Aaron.  Both were hurt and upset.  But Aaron…his heart wants to give everything he has to his friends and when it all messes up, he feels betrayed and lonely and adrift.

“I don’t have any friends,” Aaron sadly declared as his voice broke with emotion.  “And I don’t want to come back tomorrow!!”  Just then, standing behind Barb, came the voice of Koren.  She’s Aaron’s friend, and though at times she’s hard to understand, I clearly understood this.

“I’m your friend, Aaron,” she said.  “I’ll give you a hug.”

So Barb stepped aside and Koren gave Aaron a dear, kind hug along with a few pats on his back.  It was just the sweetest thing!!

Aaron and I sorted through the story with Barb before finally pulling away from the curb.  But soon Aaron said he had left his billfold with Barb, so I quickly turned around and drove back to Paradigm.  I went inside, and when I came back out, there was Aaron leaning inside the van that held Natalie.  I was concerned!  But as I stepped closer, I heard Natalie say, “I’m still your friend, Aaron!” 

Aaron backed out of the van, his face a picture of relief…and Natalie’s face alight with a smile. 

Later Aaron, as he so often does, asked me if he could give Natalie a card the next day.  After saying he didn’t want to go to Paradigm the next day, I knew that wanting to take a card was a good sign that he was softening about going.  So I found a card for Aaron and he carefully wrote Natalie a note…a short note with a huge message.

WP_20180130_19_12_23_Pro (2)

We all need a friend, don’t we?  One thing that amazes me at Aaron’s day group is to walk in and see the interactions of these special adults.  They love being and having friends, just as much as you and I do.  Life is so very hard for them, harder than I can even begin to imagine.  Sometimes it would be easy to feel sorry for them, sorry to the point of tears. 

But then I see them welcome Aaron when he walks in the door.  I see their smiles, their hugs, their concern for each other expressed in various ways.  I see Aaron welcomed and loved, even after having a hard day previously. 

His friends there are a picture of love and acceptance.  I don’t see jealousy or judgment or bullying.  Maybe those things happen at times.  But there, among all the varying special needs and all the medical conditions…from wheelchairs or braces…with halting speech or deaf ears…curled hands and bent bodies…I see so often the joy and the love of friendship. 

That scene has touched my heart more than I can express.  I would love to share pictures, but privacy issues won’t allow it.  So you must take my word for it, and try to imagine it yourself. 

Sometimes the most needy ones are the ones who give to each of us a picture of what we need the most. 

Genuine, unconditional friendship. 

WP_20171030_10_25_08_Pro 1

 

I’ll Go Happy

Last Monday, Aaron had a rough and grouchy day at his day group.  Sometimes we can pinpoint the cause and other times we just can’t.  I’m so thankful for the understanding staff at Paradigm.  I don’t know how they do what they do on some days, but I do know that they don’t get paid enough for all they endure on those days.  I love their philosophy:  Tomorrow is a new day and we start all over.

As I said goodnight to Aaron at the end of his rough day and gave him a hug, Aaron said, “Mom, tomorrow I’ll go happy!”

So on the next day, the new day in which we were starting all over, Aaron was indeed happy.  His attitude was entirely different than the no good very bad yesterday.  And on this better day we also got some wonderful news from our daughter in Houston.  She has a break between jobs and was coming home for a visit!!!!  Not only Andrea was coming, but also her boyfriend Kyle!!!!  Not only Andrea and Kyle were coming, but also Andrea’s two dogs and Kyle’s dog!!!!!   

wp_20161029_09_14_39_pro

Can you tell I was excited?  You bet!  Aaron was excited, too.  He loves and misses his sister.  He’s getting to know Kyle and to realize that Kyle is a new part of our family.  But oh, I know Aaron and I know that having a house full of people and pets can be challenging for him.  We face this issue any time that we have extra people around…..extra noise……extra routine disruptions……extra attention grabbers away from our usual main attention grabber.

We work to prepare Aaron for those disruptions before they occur.  I went over several things with him, like how he would use Gary’s and my bathroom while Andrea and Kyle were here.  We talked about the dogs and how we need to act with having four dogs in the house.  I tried to cover all the bases with Aaron, but Aaron brings out new bases quite often……based on what’s happening around him at the time…..things we just can’t predict. 

I let Aaron stay home from Paradigm on the two Paradigm days that Andrea and Kyle were here.  Aaron was SO happy with that idea!!  He loved going with us to eat lunch at Freddy’s.

wp_20161027_13_29_33_pro_li

 

wp_20161027_13_06_47_pro_li

He loved going for a walk in Swanson Park.

wp_20161027_15_36_09_pro_li

He loved being here with us and the doggies.

wp_20161028_11_12_22_pro_li

He loved us watching Independence Day Resurgence with him while he ate snacks and snacks and snacks.

He loved trying to sneak snacks and snacks and snacks to the doggies.

He loved talking to all of us, especially to Andrea and Kyle, about all his favorite topics.  And this is where we usually start seeing some issues with Aaron, because Aaron doesn’t know when to stop talking.  Sharing the stage is hard for Aaron.  He truly wants to be included in our conversations as we sit around the dinner table, for instance.  We do listen to him and try to include him, but Aaron isn’t going to talk about the subjects that we talk about. 

Here is a sample conversation:  We may be talking about Andrea’s new job or talking about Kyle’s summer at sea.  Then Aaron will loudly call one of our names.

“Andrea!!”  he says.  When she responds to him, we often hear this from Aaron:  “Ummm.  Ummm.  Ummm.”  We wait.  “Ummm.  Did you know what the Queen Alien on Independence Day Resurgence looks like?!”

“No, Aaron, I don’t know what she looks like,” Andrea answers.

“Well, she looks like a…..I don’t know.  Mom, what do you think she looks like?” Aaron asks.

So I try to answer but I don’t really know how to describe the Alien Queen because it’s been awhile since I saw that movie….and I don’t really care what the Alien Queen looks like…..and in trying to muster some enthusiasm and interest in this question that I’ve heard a hundred times, Aaron can sense a shift in my emotions.  As much as Aaron struggles with social norms, he is very adept at picking up the subtle cues that we are not as animated about Alien Queens as we are about Andrea’s job or Kyle’s schooling. 

He views our world from afar, wanting so much to enter in, but never knowing how.  But he does express his frustration by comments that we later hear.

“Mom, you didn’t want to talk to me.  You just wanted to talk to Andrea or Kyle,” he will say. 

I try to explain that we do want to talk to him but that we haven’t seen Andrea or Kyle in so long…..and we want to catch up with them on their lives…..but to Aaron that doesn’t make sense.  Round and round we go, and where we land nobody knows.  Or when we land.

Which happened on Friday during supper.  Andrea’s friend, Sarah, had come over to see Andrea and Kyle.  They sat in the family room visiting and talking and laughing.  Aaron was up in his room, then down in the family room…..up in his room, down again.  He wanted to be a part and he was in many ways.  He just can’t be the whole part and so conversation would swirl around him.  Kyle was talking and laughing at one point, and Aaron whacked Kyle’s leg with a book.  I heard it but didn’t see it.  It was a sign of things to come.  Aaron was frustrated now, truly frustrated, and when that happens he picks a target.  Lucky Kyle.

I don’t remember all the details of what happened at supper.  I was up from the table getting slices of cheesecake ready to serve.  Aaron was at a boiling point and we didn’t realize it.  His system was on overload…..his pressure gauge was maxed out…..and he erupted.  He leaned forward and yelled at Kyle. 

Aaron left the table.  We apologized to Kyle.  He was understanding and patient.  Aaron came down later and apologized.  We watched the movie later and Aaron was very happy, as if nothing ever happened.

Why do I tell you this story, one you’ve heard before if you’ve read this blog for very long?  Because this scenario is just a very real picture of how Aaron processes…..or doesn’t exactly process…..the world around him.  Our world is ticking along like normal, but Aaron’s isn’t.  He is so impacted by nuances that we don’t even notice.  Sounds…..loud laughter that he doesn’t understand…..hilarity……silliness…..his routine changing….   All these things greatly affect him, more than we can begin to know. 

So he reacts, usually loudly and hurtfully.  Then he’s sorry.  It takes great understanding, as I’ve said, to deal with this about Aaron.  He doesn’t think like we do or process as we do or react over time as we do. 

But he truly wants to. 

Andrea and Kyle left to go back to Houston the next day.  Aaron was with us in the driveway, entering into things, when Andrea asked for a hug.  Aaron ducked his head and walked away, through the garage and into the house as he muttered to himself.  A hug in front of everyone?  Are you kidding me?!  We know this about Aaron and it makes us smile.  He can yell, but spontaneous hugs are very, very difficult.

One of the first things I did after they left was to get Aaron’s things put back in his bathroom.  “Us kid’s bathroom,” he calls it.  We got his cup with his toothbrush and toothpaste put back on the counter.  We got his body wash and wash cloth back in the shower.  We hung his towel on the towel rack. 

Aaron then noticed that his razor attachments were not in the correct place.  He rearranged them the way he wanted them.  He stood back and observed the counter for a few seconds. 

wp_20161031_11_20_44_pro

Then he said, “OK.  It’s looking good.”

That night at supper, Aaron asked the blessing.  He nearly always says two things when he prays.  He doesn’t say the same thing with each prayer, but he says two things.  On that night he said, “Lord, thank you for the food.  And thank you that Kyle and Andrea got to come.”

wp_20161027_12_31_13_pro

Yes, it was looking good now for Aaron.  He was happy that Andrea and Kyle were here, along with Darcy and Oakley and Aries and our own Jackson.  He will be very happy when everyone comes for Christmas. 

Aaron will have every intention of saying, “I’ll go happy!” 

He’ll go happy into our family time, but it will be a time of upheaval for him and of struggle as well.  It’s up to us to understand that and to allow that for Aaron, all the while trying to help him know how to take time to decompress and not to blow up. 

Only when things are back to normal…..Aaron’s normal…..will he be able to step back and say, “OK.  It’s looking good.”

And it’s very important for us to be able to look at Aaron’s world through Aaron’s eyes, and still be able to say, “OK, Aaron.  It’s looking good.”

Let’s go happy!  It’s sometimes the hard choice, but always the best choice. 

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.

wp_20160903_12_34_08_pro_li

 

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.” 

WP_20160622_12_59_14_Pro_LI

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.

WP_20160622_12_50_01_Pro_LI

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!

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:

 WP_20160427_13_05_54_Pro

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. 

 WP_20160427_17_20_21_Pro