Cool Aaron

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Well!!

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

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

“I like you, Mom,” he quietly said.

“I like you, too, Aaron,” I affirmed.

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

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

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

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

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

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

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

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

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

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

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

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

Aaron Moore is cool.

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

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

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

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

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

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He’s cool when he’s playing a trick.

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

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

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

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

Aaron Moore IS cool!

 

Mom, Don’t Be Sad

Blah!  Bleh!  However you want to spell it, it’s how I feel right now.

If we’ve learned one thing about Aaron, it’s that we’re always learning about Aaron.  The autistic brain, as well as the brain changed by seizures…and let’s not forget the brain impacted by so many meds…is indeed a complex mess at times.

Aaron’s mess often makes me a mess.

I also feel like a Yo-Yo.  Up and down…up and down…up and down.

Aaron had a cold last week and was home for a couple days from his day group because of it.  On Friday he was out of bed and reluctantly ready for Paradigm when I looked down the hall and realized that he had gone back to bed.

Oh well, I thought.  I guess it’s another home day for Aaron.  I had a must-do trip down to the air base scheduled, so off I went, minus Aaron.  But I was barely down the road when my phone rang, and there was Aaron, out of bed and ready to go to Paradigm.  I turned around, picked him up, and off we went – his current CD of choice playing and a smile on his face.

What a relief to me to see him happy!

I told him about the pizza lunch that was scheduled, being careful not to use the word “party,” because Aaron doesn’t care for parties.  I definitely didn’t tell him about the planned dance, either, because Aaron not only doesn’t like parties, he REALLY dislikes parties with dancing.  It’s all just too much sensory overload for Aaron, despite the fact that Aaron himself causes plenty of sensory overload for those of us who are routinely living in his world.  Go figure.

Aaron was still pleasantly happy when we pulled up to Paradigm.  He was still happy when he called me later to give me a report on his day.  And happy still when I picked him up later…an early pick-up just for fun and so we could make our Friday Wal-Mart shopping trip for weekend treats.

Aaron came to the van looking like this:

 

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Chris, one of the staff, jokingly put some tape on Aaron’s mouth…and I can surely guess why…and Aaron loved it.  He wanted to go into Wal-Mart that way, but stuffy mom said no!

Aaron immediately asked me in Wal-Mart if we could buy him an Xbox and I immediately told him no…as always.  I reminded him that an Xbox is too expensive to buy for a weekend treat.  Aaron asked if he could go to the electronic section to look around since he had no interest in looking at hair spray and make-up, so off he went with a reminder from me to NOT run!

I should have also reminded him to not bother any of the associates since I know that Aaron invariably finds an unsuspecting associate in their blue vest, and invariably asks them questions.  Friday was no exception, as Aaron told me later what happened.

“Hey!” Aaron said as he pounced upon said associate.  “Do you sell any CHEAP Xboxes?!”  😊  😊

Once home, Aaron helped me carry bags in the house.  He helped me make spaghetti for supper.  Never mind the broken noodles all over the stove-top.  He was trying his best.  He helped me make brownies, looking down at the bowl of batter and asking, “Is that the WHOLE brownie?!”

 

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He set the table, took the recycling items to the garage bin, and learned a funny song to sing to Kyle the next day for his birthday.  And after supper, he crammed spaghetti in his mouth and mumbled, “Send a picture to Andrea!!”

 

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On Saturday morning, we called Kyle for his birthday and Aaron happily sang his funny song that he had practiced over and over in his monotone voice while on his computer:  “Happy Birthday to you!  Happy Birthday to you!  You look like a monkey.  You smell like one, too!”

And Aaron, who is often jealous of his new brother-in-law, rubbed his hands together in delight after he sang his song, and ran upstairs after laughing loudly.

That afternoon, while Gary worked on our extremely frustrating messed-up internet, Aaron and I went for a walk in Swanson Park.  We saw beautiful Kansas prairie grasses.

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We saw lots of very old, dramatic trees.

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Aaron even happily posed for a picture.

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But best of all, we got up close and personal with this gorgeous deer.

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What a very fun, relaxing afternoon!

We finished the day watching a movie while eating supper, with Aaron totally delighted to eat his egg rolls as he watched a huge volcano erupt.

After church on Sunday, Gary had to get busy on our internet repair again, so Aaron and I scooted down to the grocery store for his favorite Cheddar Pasta Salad…and chicken…and drinks…and then doughnuts at Paradise Donuts down the road.  But as the day went on, and especially while I was on the phone with Andrea, I noticed that Aaron’s happy brightness was fading.  And after another movie that night, and one of his favorite television DVD shows, I knew that our happy time was over.

I just wish I knew why.

I really wish that Aaron knew why and could talk about it.

Asking Aaron to talk about his feelings or to verbalize his thoughts about these things would be like me asking him to walk up the stairs if he had Cerebral Palsy and was in a wheelchair.  That’s how impossible it is.

And even though I kept telling myself that this very happy time would no doubt end, I still realized that deep down I dreamed that maybe it wouldn’t end…that maybe Aaron would see how much fun it is to be happy and compliant, and would want to stay that way.

It was like Aaron crashed.  Like he went from being manic to being angry again, for whatever reason.  He was just upset for no reason that I could see.

He said he was not taking his pills, but he did.  He said he was not taking his CBD oil, but he did.  He said he wasn’t going to bed, but he did.  He said he wasn’t going to brush his teeth, and he didn’t do that.  Of course.  😊

I just shut down, trying to stay flat and unaffected in order to not escalate Aaron’s unhappiness.  He noticed my change every bit as much as I noticed his.  He didn’t like it and wanted me to be happy even as he was anything but.

“Mom!” he said.  “Don’t be sad!”

But if I tried to explain why I was sad he did not want to talk about it or to hear me talking about it…talking about how he had dramatically changed so quickly.  No talking allowed.  But no sadness, either.

Aaron was worried that I wouldn’t participate in our nightly routine, especially talking to him over the monitor from our bedroom after he was all tucked in his bed.

“Mom?” he asked over the monitor.  “Are you going to say goodnight?”

So I did, half- heartedly, and he knew…but he thought that he should just be happy with what we had at that moment.  And so did I.  But once more before we were done, he said it again.

“Mom, don’t be sad.”

My tears came then when Aaron couldn’t see them.  Tears of frustration and sadness.  Tears due to the realization of how very much I loved our fun days, without any stress, and how much I wished they could last forever.

And having those happy days, only to have the anger re-emerge, showed me just how stressed I often am.  I was so relaxed and content when Aaron was happy, but the instant stress again was a real blow.

Many of you reading this, in your own particular context, know exactly what I mean.  The ups and downs of life take a toll.  The good news and the bad news.  The hope and then the dashing of hope.

Long term care-giving mamas, though, know it all too well.  Balancing the moods, the environment, the activities, the meds, the decisions…and most definitely, the guilt for not thinking we’re doing it well enough.

Gary was right beside me last night, as always.

And so was God.  He reminded me as I laid awake for a long time of His love for me and of His unending grace.  Grace upon grace.  Grace for me and for Aaron…and grace to give to me so I can give it to Aaron.

God’s strength is made perfect in my weakness.  He never lets me down or leaves me to my own resources.  He is forever there for me with that tangible comfort that only those who really walk with Him will know and understand.

In a real sense, these hard times…this Yo-Yo life with Aaron…keep me experiencing God in a way that I might not otherwise.  For that I am thankful.

“Mom, don’t be sad.”

Aaron has no idea of how God uses him to teach me so much.

 

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Let’s Go Racing!

Our son, Andrew, works for a professional NHRA race team.  He works for Don Schumacher Racing and is on Leah Pritchett’s team.  It’s an unusual, hard-working, and interesting life.  Gary and I subscribe to the NHRA live feed so that we can watch each qualifying and elimination run at every race from February – November.

 

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This weekend the big Indy Nationals Labor Day race is being run for its 65th year.  It’s a huge event!  And you can bet that Gary and I will be watching each run.  One qualifying run was on Friday…two runs today…two more tomorrow…and the big race will happen on Monday.  It’s so much fun to be able to go to the races while we’re at home!  And even more fun to see Andrew!

 

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Leah and the team won the race at Brainerd two weeks ago.  Here is a picture of Andrew and Leah with the coveted Wally trophy.

 

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We wish all of them the same success this weekend, for sure!

Someone else will hang out with us, too, for each run.  Aaron!  Now this is unusual because Aaron used to care nothing for racing.  Part of that was lack of interest in the sport.  But a huge part of his lack of interest was also due to jealousy.

Aaron has struggled with resentment toward Andrew for years.  I think it’s partly because they are both guys.  Aaron wanted friends like Andrew had…wanted to drive a truck like Andrew did…and craved the attention Andrew got when he told his cool stories.

Therefore, when Aaron would see Gary and me watching a race, he would say, “I don’t care about that stupid race!!”  And off he would stalk, mad at us for the time and attention we gave to the race…and mostly to Andrew.

Something changed, though, a few years ago.  Aaron took an interest in racing and so he would come down to Gary’s study to join us.  Granted, sometimes his head is buried in his Nintendo DS, but he is still listening and soaking up knowledge about drag racing.

It was amazing and wonderful to hear Aaron talk to Andrew on the phone.  “Hey, Andrew!!  I watch you on racing!”  And to hear Andrew so sweetly engage with Aaron, and to say he’s glad he gets to watch.

Our little neighbor came over a few weeks ago to watch a run with us.  Keegan is in the first grade.  It was so cool to hear Aaron answering some of Keegan’s questions about drag racing.  Things like the difference in Funny cars, like Andrew used to work on:

 

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And Top Fuel cars, where he is now:

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It was also fun to hear Aaron talk about Leah Pritchett, the driver of the car where Andrew is now working.  This has been one of the funniest and sweetest aspects of Aaron’s interest in racing.

Leah is very pretty.  Aaron has never mentioned before that a girl is pretty.  He might talk about her hair being “yellow”…or her clothes that are weird…or her weight!!…or any number of other aspects that often require our correction.  But being pretty?  Nope.  Aaron has never seemed to notice.  Until Leah…

The first time he saw her in a close-up shot on our television, Aaron said, “She has nice eye polish!”  😊  😊

Gary and I stifled laughter as we looked at each other in shock.  Aaron noticed her eye make-up?!

When I was able to meet Leah in person two years ago at the Houston race, I told her about Aaron and what he said.  She loved it!

Aaron has broadened his appreciation of Leah, though.  He says that she is beautiful, and that he wants to marry her…which is to Aaron a normal connecting of the dots, not at all unusual or extreme.

This past year, in Houston, I asked Leah to sign one of her posters for Aaron.  She was glad to do so.

And Aaron…he was BEYOND happy when I handed him his poster, signed – LOVE, Leah!!

He has showed this poster to all our neighbors and to many others who have come to our house.

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I told Leah about this at the Topeka race, about how happy Aaron is to have her signed poster.  It made her smile, and then to ask when she would see Aaron.  But taking Aaron to an actual race…that’s a whole other challenge!

In all this racing interest, the best part has been to watch Aaron care about Andrew’s life and his job, and for the bond that has been formed between them.

“My brother is a drag car racer worker!” Aaron tells everyone.

That’s the best win-win, in our book.

But we would still love to see another Wally this weekend!

 

A Girlfriend

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

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

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

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

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

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

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

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

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Aaron didn’t want to look at old architecture.

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Aaron didn’t want to have his picture taken.

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

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

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

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

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

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

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

Oh dear!  Busted!!

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

“What was it like?” he continued.

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

“I want to be special,” he said.

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

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

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

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

And we feel mean to tell him these things.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Colliding of Obsessions

How did such a small thing cause such a huge problem?!

That’s what I was asking myself yesterday as events unfolded at Paradigm, Aaron’s day group.

The small thing was a simple little Subway gift card.  I had used the remaining money on it last Friday when Aaron and I went to get subs for supper.  I had asked Aaron to throw it away in the trash can near the door as we left, but instead he saw the opportunity to keep something interesting.  He thinks gift cards are fun to hold, like a credit card, and to slip in his pocket for safe keeping.  When he asked if he could keep it, I agreed…with the further comment from me that I would one day be throwing it away when I found it laying on the floor of his room.  Experience is a good teacher, after all, and a good reason to hope that Aaron will keep the floor of his room picked up.

Yesterday morning, Aaron once again slipped the little yellow Subway gift card in his pocket as we were getting ready to leave for Paradigm.  Of course, I didn’t see it or know that Aaron had it in his pocket.  Even if I had, I wouldn’t have objected.  But that was yesterday.  Today might be a different story.

You see, Aaron tried to give the card to K, another client at Paradigm.  What I didn’t know, but I do now…as does Aaron…is that K is a hoarder.  Aaron has in the past caught on to the fact that she loves notebooks and papers.  He brought her two notebooks from our house, and wanted to continue until I said no.  I also found out that Aaron was taking paper from the computer printers at Paradigm, and trying to sneak it to K.

One day as we were leaving for Paradigm, Aaron ran back in the house to get something.  I followed and waited in the kitchen.  Soon Aaron rounded the corner, surprised to see me standing there.  Look at what was under his shirt.  BUSTED!!

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Aaron was laughing because he saw the humor in the situation, thankfully.  I had asked him if he was taking K a notebook, and he told me no…but he was laughing because the truth was very obvious!

Back to the Subway card.  The staff at Paradigm saw Aaron give K the card, but they had to take it away because of her hoarding.  Aaron was VERY upset by this!  My cell phone rang as I was on my way to get him at the end of his day.  There was Aaron, trying to explain the situation to me but getting more belligerent with each word.  Barb was there, trying to explain and to calm Aaron, but he would have none of it.  He yelled at Barb, very angrily, but Barb was able to explain things to me as I neared Paradigm.

Aaron came to the van, unhappy and frustrated and embarrassed.  We talked as I drove us home.  We talked after we got home.  We talked during supper.  We talked after supper.  We talked during the evening.  We talked out in the yard with our neighbors.  We talked on the way to bed.  We talked after Aaron was in bed.  We talked first thing this morning.  We talked during breakfast.  We talked while I was fixing my hair.

You get the idea, right?  Aaron must talk and talk and talk and talk as part of his method of processing these situations.

But here’s the deal…the thing that strikes me so much about all of this.

So many of the clients at Aaron’s special needs day group have obsessions of varying sorts.  An obsession is a “compelling motivation.”  And trust me, these special adults are extremely compelled in their motivations to satisfy their various obsessions.

One of Aaron’s obsessions is to give things away.  Now, that sounds very sweet, and often it is.  But he will give away his food.  He will give away his money.  And he will give away anything else he has that he thinks might make someone happy.

What he doesn’t understand is that often he is also feeding another person’s obsession…an obsession that the staff is attempting to help the person control.

Years ago, Aaron met Rosa at Paradigm.  They became special friends.  Aaron found out that Rosa liked crayons, so he would take her a few crayons almost every day.  I didn’t realize that Rosa didn’t just like crayons…she was very obsessed with crayons.  Too many crayons pushed her over the edge emotionally.  I learned this after talking to Rosa’s mother.  She and I are good friends today, and I was very thankful that she let me know that Aaron’s generosity was actually a detriment to Rosa.

Over the years, we have seen this pattern repeated over and over with Aaron’s various friends.  One wants his food.  Another wants his money.  One likes stuffed animals.  On and on.

It’s what I call the colliding of obsessions.  Aaron will give ANYTHING away, so if he finds that someone likes something, he will do anything within his power to see that they get it.  He is feeding his obsession while feeding theirs.

Few of these special friends of Aaron’s can fully understand the situation in which they find themselves.  Reasoning through this with Aaron was extremely difficult yesterday.  He blamed Barb.  He was angry with me, and with Gary.  He firmly informed us that he was NOT going to Houston with us to see Andrea and Kyle over the 4th.

And he obstinately folded his arms while telling us that he didn’t care!

But he does care.  He just can’t rationalize this like we can.  And neither can his special friends at Paradigm who struggle with their obsessions.  It’s a volatile mix!

Kudos to the staff at Paradigm, and at so many other special needs groups, for all they must handle when it comes to these situations.  Most are like Aaron and can’t connect the dots in order to make a complete picture.  There is anger and yelling from the clients while the staff must remain calm and focused.

Every.  Single.  Day.  The staff diffuses these situations every day.  Just this morning Barb told me that she had already taken a whole sack of used QT coffee cups and empty containers of disinfectant wipes away from K!  And I’m sure K was not one bit happy.

I kept Aaron home today to allow him more time to decompress, and to decide that Barb really isn’t the enemy here.  He loves Barb – she’s his second mother – and tomorrow he’ll probably be fine.  I’ve had time to further explain K to Aaron.

As we talked, Aaron told me that K saw the card and wanted it.  I don’t know if that’s totally true, but he also said that she told him it was her birthday and he should give her the card.  His statement to me, though, was so telling…said in Aaron’s very special way.

“Mom,” he said, “I fell into her idea.”

I chuckle at how he words things while also being amazed at his insights.

Oh, if only he would remember not to fall into other’s ideas…and into many of his OWN!!

And if he would also remember what I tell him on many days.  I tell him not to give away his money, but to give away kind words and friendship to others.  No one can get enough of those!

That’s an idea worth falling into!

 

 

 

 

 

 

The Dandelion

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Holding Nora’s Hand

Nearly 20 years ago, Gary retired from the military and we moved to this house in this neighborhood in Kansas.  We’ve lived here the longest that we’ve lived anywhere and grown roots that we never dreamed would go so deep.

We hadn’t met our next-door neighbors yet when one day the kids and I were out working in our yard.  It was a hot summer day.  There in the driveway at the house beside us knelt an elderly man, our yet un-met neighbor, pulling weeds in the hot summer sun.  He was kneeling in his gravel driveway, working hard on those weeds, all the while coughing like crazy.

I was worried about him, so I told our three children to run over and see if they could help him.  Off they scurried, only to be told no and thank you.  We were sad that he didn’t want the help and worried about his coughing in the hot sun, but no is no.

Time went by, as have many of my memories.  I don’t recall how we broke the ice with our neighbors, but I do know that they loved our white German Shepherd, Rainey, and they eventually learned to welcome us and our children as their new neighbors.

Thus, we slowly came to know Don and Nora Kelly.  I distinctly remember that first Christmas, standing on Don and Nora’s front porch holding our simple covered plate on which we had placed some home-made Christmas goodies.  Don was totally surprised to open the front door after we rang the bell, and to see all five of us there with our smiles and our Merry Christmas wishes as we handed him the plate.  He was embarrassed and awkward as he thanked us, and then said, “But we don’t have anything for you.”  We told him it wasn’t necessary and that we just wanted to wish him and Nora a wonderful Christmas.

The following Christmas, our doorbell rang one day and there stood Don, a smile on his face and a gift bag in his hand.  We exchanged Christmas gifts every year from that point on, for fifteen years.

Don and Nora were very private people, still not wanting to ask for or to receive help from any of their neighbors.  They did, however, learn to take the garden veggies that we shared with them every summer.  I also learned that Nora absolutely loved my homemade rice pudding, so I would sometimes surprise her with a big warm bowl full…and remind her that she had to share with Don!

Don’s hearing wasn’t the best and he never would get hearing aids.  Nora loved to talk…and talk…and talk.  I knew never to go over if I was in a hurry to get away, because Nora had lots and lots to say.  Don would smile and then disappear, leaving Nora and me to talk.  Well, leaving mostly Nora to talk and me to listen.

Don and Nora were very close.  They went everywhere together.  I never saw Nora drive.  When they were out shopping or eating, wherever they walked, they always held hands.  Always.  People who didn’t even know them recognized them as the cute old couple who were always holding hands.  There they would go, little tiny Nora dressed to the nines and with her long gray hair pulled back in a ponytail…and very tall Don, usually in a suit with his hair still dark.

Sometimes I would run into them at our local Dillon’s store.  We would stand in the aisle, Nora talking up a storm in her little shrill voice, with Don beside her smiling as usual.  The last time I saw them there, I snapped this picture of them as they walked away.  Hand in hand…always.

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That Christmas, in 2013, I went over to their house as usual with our Christmas goodies.  Don answered the door.  He didn’t look well.  I stepped inside as he took our gifts and then said that he would get Nora to go downstairs to get ours.  I thought that was unusual.  Nora soon came with their gift and told me that Don wasn’t strong enough to go down the stairs and back up.  He had been sick, she said, and she was worried.

Things went downhill quickly from there.  Their other neighbors, the Tuflys, were also keeping an eye on Don and Nora.  One day they told Nora that an ambulance was coming to take Don to the hospital.  They had called one to come, and despite Nora’s objections, Don was soon admitted to the hospital.  When he finally came home days later, he was under Hospice care for advanced cancer throughout his body.

Nora insisted on caring for Don at home, though she was weak and exhausted herself.  But Nora was a tough wife who refused to let Don die anywhere but at home.  Our two families on each side of them helped…a lot…and three months after returning home, Don was gone.

Poor little Nora was left alone.  After being married to Don for 68 years, she was suddenly all alone in her big house and all alone in her many big decisions to make.  She had no hand to hold.  It was sad to see.

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She so wanted to be with people all the time.  She loved coming over to our house, including spending time with Aaron even when he got impatient with her.

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Both of us neighbors stepped up to help her with the housework, yard work, shopping, doctor appointments, and the many decisions she needed to make about her future.  Eventually, we helped her sort through every room and closet and drawer of that big house as she got ready for an estate sale and then a move to a retirement center.

Five months after Don died, we moved Nora to her new home.  What a huge transition this was for her!  Nora, I learned, was extremely afraid of being alone.  But alone she was, and she knew she had no choice.  Her inherent stubbornness stood her in good stead as she adjusted to not only this very new life, but a new life without Don by her side.

I had no idea at the time about what Nora would need, but I did know that she needed to be seen by her doctor about a wound she had gotten on her leg.  She was sent to the wound center, where she initially needed to be seen several times a week.  I reluctantly made the appointments for her, not sure how I was going to manage both Nora’s schedule and taking care of our special need’s son, Aaron.  Yet I couldn’t just walk away and leave Nora stranded.

Things grew after that.  Nora needed compression socks, special lotion, wrappings, and more doctor appointments.  Her eye doctor visit came, with a referral to a retina specialist.  She needed a new family practice doctor, along with an ENT referral and soon had to be seen by a podiatrist.  And don’t forget her normal dental visits…medicines to fill…insurance…hearing aids to buy.  It was too much for Nora to manage and understand on her own.

In a way, I became the daughter that Nora never had…and she became the mother that I never got to care for in her old age.  We got into a routine of sorts, Nora and me.  We were getting into a groove, you might say, bumps and all.

It hit me one day that I was now the one holding Nora’s hand.  From the very beginning of our outings, she would hold my hand as we walked.  Part of her reason was that holding my hand gave her stability, but I learned that holding my hand also gave her security.  She knew she wasn’t alone.

Nora needed me, but she had to learn to share me.  She especially had to share me with Aaron.  This meant that her appointments had to be scheduled around his doctor visits, and around the fact that I had to take Aaron to his day group every day and then pick him up.  I never knew about Aaron’s seizures, of course, so there were times I had to cancel a fun day or a doctor visit day with Nora.  She learned to adjust, but oh it was so hard for her to do that.

Nora also had to learn to trust me.  Trust was not an easy thing for Nora.  I learned that fact quickly on the day she was called back to see her doctor and I offered to watch her purse for her.  I got a big NO from her on that one!  Over time I knew that if Nora and I were to be together as much as we were, then I would need to earn her trust.  With time, that happened, and it filled me with joy that she would trust me with so much of her life.  And she even let me put my hand in her purse to help her find things – a HUGE no-no when I first got to know her.  When she let me hold her credit card or hold her purse while she was in a restroom, I knew I had truly arrived at full trust!

Our relationship continued to grow beyond doctor visits and trips to the grocery store.  We shared with each other our lives, our disappointments, our worries, our joys.  Nora gave me advice gleaned from her many years of living, and I tried to give her encouragement when she was scared and worried.

As time went on and we grew closer, Nora would also reach for my hand in more personal ways.  When I was driving, she would hold my right hand and tell me that she loved me.  As we sat in doctor’s waiting rooms, holding my hand gave her comfort.  And if we had a disagreement or she was upset, she would take my hand as she told me she was sorry.

One of the best things that we shared was our love for God.  Nora would pray the sweetest, most heart-felt prayers.  We nearly always prayed before we ate, and Nora really wanted to pray before seeing a doctor.  She was always the most panicked before those doctor visits – even before getting her teeth cleaned!  But prayer was a big part of Nora’s life, both praying out loud together and asking me to pray for her at home while assuring me she was doing the same for me and my family.

Nora wasn’t always an easy person to be around.  Our personalities were mostly opposite of each other.  I could make her laugh, though, and those times were so much fun.  It was good to see her relax, to enjoy life, to laugh, and to have something positive to remember.  She especially loved just riding, looking out at the pretty Kansas scenery as we drove up to Yoder or as I purposely took the longer, country route back to her apartment when I could.

She loved it when I took her to see the graves of Don and their son, Jim.  We made sure that there were always flowers in the vases…also making sure she could always buy them for half price at Hobby Lobby!

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And oh, how she loved eating out!

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Nora definitely made me laugh.  Did she ever!  She had the funniest sayings and such a spunky attitude.  She said whatever she thought, but she could get by with it at her age.  Servers in restaurants and the employees in stores we frequented enjoyed her so much.

Nora was very, very thrifty.  She never wanted to spend a dime more than was necessary.  I became very proficient at sneaking more money on the table for the server’s tip because Nora rarely left enough.  Once when we were in TJ Maxx, her favorite store, she insisted on me picking out a sweater as a Christmas gift from her.  Here’s how it went:

 

Nora:  Now, Patty, pick out anything you want and don’t worry about the price.

Me:  Nora, you don’t have to do that.

Nora:  No, I WANT to do it.  Now get something and don’t look at the price.

Me:  Are you sure?

Nora:  YES!!  Get whatever you want and don’t even think about the price.

Me (finally holding up a sweater):  I like this one.

Nora:  How much is it?!

 

HaHaHaHa!!!!  That was so Nora!

I have many funny stories that I could share about Nora.  Sad stories, too, as this past year Nora began to greatly decline.  When she first moved to her new home, she was alert and mostly healthy and so pretty.

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But last year, I noticed her increasing tiredness and confusion and weakness.  I talked her into getting a wheelchair to make our outings easier.  She would fall asleep while we were shopping, or when I would do her nails.

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Her vision was getting worse, and even though her retina doctor wasn’t sure if treatments were helping her, she insisted on continuing with them.

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She would call me, and others, at all hours of the night.  She would wander the halls of her assisted living center during the night and was very confused about what time it was.  But she kept pushing on, not wanting the increased help that was provided and not wanting to discontinue our outings.

On May 1, I picked Nora up for what she called a “fun day.”  That meant no doctor appointments or anything else stressful.  We went to our new Cheddar’s for lunch.  Nora had never been there, so she was excited.  She ate a bacon burger and fries, loving every bite.  Then we went to TJ Maxx, where she bought two big bottles of perfume.  I think she bathed in the stuff!  Finally, to Dillon’s for a few of her essentials, where the wonderful employees there greeted her and made her feel loved.

On our way back to her apartment, she took my hand as I drove.  “Patty,” she said, “I don’t think I thank you enough for all you do.”  I assured her that she did.  “No,” she said, “I don’t believe I do.  I just want you to know how very much you mean to me and how thankful I am for all you do.”

At her apartment, she sat and watched as I put her things away, opening her perfume bottles for her as well as her other items.  I showed her several times that her credit card was indeed in her wallet in the pocket of her purse, and that the zipper was shut.  I put her receipts where they belonged and her mail, and once again went over her medicines with her.  All the things we always did.

I could tell, though, that Nora wanted to talk so I sat down beside her.  She told me that she just wanted to be loved, so we talked about that.  I assured her of my love for her.  She wanted to talk about heaven, so we did.  There were some personal things said, revealing some of her hurts in life.  I put my arm around her.  I tried to comfort her as best I could, but she knew I was leaving soon.  She always hated my leaving and being alone again.

That day, while we were out, she asked about all my children…each one by name as best she could remember.  She asked if they were happy.  Before I left her that day, she told me that she was so glad my children were happy.  Then our last words were what they always were.

“I love you, Nora,” I said.

“And I love you, too,” she replied.

Then a kiss…because Nora always wanted a kiss goodbye.

On Sunday, May 5, Nora called to ask me to cancel her retina appointment on Tuesday.  She told me she was sick, so I told her I would make an appointment with her family doctor, but she said no.  Before we hung up, she told me that she didn’t think she would make it through this.

I had a full day on Monday, so I wasn’t able to go see her.  I planned to go on Tuesday to check on her and to try to talk her into seeing her doctor.  But on Monday night, shortly after 11:00, I awoke to hear my phone vibrating over and over on my nightstand.  I clumsily answered it.

The nurse on the other end identified herself.  I immediately thought that Nora must have fallen and that she was on her way to the hospital.  But it wasn’t that.

“Patty,” she said.  “Nora passed tonight.”

It was so shocking.  So fast.  If only I had known on that Monday how quickly Nora was going downhill, I would have gone to be with her.  I would have held her hand until the end, but instead she died alone.  I know it’s not my fault, but I do have regrets that I wasn’t there the way she would have wanted.

There were many other regrets that ensuing week for all of us who knew and cared for Nora.  Nothing was done in the way that Nora had carefully planned with me several years earlier.  Each of us have had to come to terms with this, and to say goodbye to Nora in our own ways, the best that we can.

I’m thankful for my years with Nora…for the good times and the hard times, even.  I’ve seen clearly that sometimes God plops a person right in your lap, out of the blue, for you to care for and love.  For me, it wasn’t only that I could help Nora.  Nora also helped me in ways I am still discovering.  And helping Nora was also a huge way that I could serve God.

I was privileged to hold Nora’s hand.

And I am sure that I will always hold Nora in my heart.

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