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!

Fast Forward

We all have those times in life when we want to skip song #6 and go right on to song #7……when we want to fast forward through the pain we’re facing and be done with it, moving on to other better things.

He Said What?!

Sometimes one thing leads to another, and that one leads to another, and then another leads to another, and it can just be amazing to go back and look at the picture created.  This is what I’m seeing today.  I hope I can connect all the “things and anothers” as I try to show you the beautiful picture created by God.

It started yesterday evening when Aaron went with me to Dillon’s.  When we left the store and were getting into the van, the handle of my crossbody purse somehow knocked off my earring as I moved it over my head.  I found the back of the earring as it poked my skin.  Yep, it had gone down my shirt somehow.  But nowhere in sight was my earring.  I hurriedly searched for it, and so did Aaron, but we couldn’t find it. 

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The Jam in the Road!

I broke the devastating news to Aaron a few weeks ago.

“Aaron!” I began with great excitement.  “We’re going to Houston over the 4th to see Kyle and Andrea, and YOU’RE coming with us!!”

There was a pause.  I often know what Aaron’s pauses are about, but this one was a mystery.  Not for long, however.

“NO!!” he replied with emphasis.  “I DON’T want to go to see Andrea and Kyle!!”

“What?!” I asked.  “You’re always saying, ‘Can us as a family do this or do that?’, so we thought you would love going with us.”

“I DON’T want to GO!!” he blurted out again.  “I want to stay in this house, and I want Casady to watch over me!”

I was surprised at this turn of events.  Aaron has traveled with us in the past, even on an airplane, and has not demonstrated this level of anger at the thought of traveling.  Thus began our big summer sell…yes, sell…as Gary and I attempted to sell Aaron on this idea of taking a vacation trip with us.

Just as we would be thinking that Aaron was warming up to the idea, out he would come with another reason that he did NOT want to go.

“I just like MY house!”

“I want to sleep in MY bed!”

“I want Casady to watch over me!”

“I want to eat out when you’re gone!”

“Are we eating at a restaurant on the way to Andrea’s, or at a STORE?!!”

And even when he saw a commercial about our local fireworks, he had even more ammunition for not going with us.

“SEE??!!  The fireworks start July 4th!  How can I see the fireworks if it’s not July 4th at Andrea’s house?!”

I got lots of deep breathing exercises done during those 3 weeks before our trip.  Lots.

He ran out to the porch one day when he saw me talking on the phone.

“Is that Andrea??  Let me talk to Andrea!!”

So, I put the phone on speaker.

“Andrea!!  Do you have a place in the wall in your house where I can plug in my Nintendo??!”

Seriously??  Does he think that Andrea and Kyle live in a jungle tent?!

But as always, Andrea was the picture of patience as she carefully answered all of Aaron’s questions with as much seriousness toward him and his concerns as she would if she was talking to one of her genetics patients.

He told everybody he talked to…neighbors, day program staff, family…that he did not want to go to Texas.  Everybody told him how much fun it would be, and that he should go and that he would love it.  He didn’t care what everybody said.  His mind was made up.  The big sell was not working.

He and I packed his DVD player on the weekend before we were leaving.  He picked out some movies.  We packed his CD player.  He picked out some CD’s.  We packed his Nintendo DS.  He picked out the game he really wanted to play along with the game guidebook.  We packed his Handy Answer Geology Book because his topic of choice and endless conversations at that time was all about the core of the earth.  We packed his snacks.  He picked out Pringles and Twizzlers and peanuts at Wal-Mart.

There!  We were all set!

Or so we thought…and hoped.  Silly parents!

On Tuesday, the day before we were leaving, I had hoped to get out the door to take Aaron to his day group a little early so that I could get a pedicure.  But Aaron was grouchy about having to go to Paradigm and having to go to Texas the next day.  He was a simmering mess as we drove to his day group.  And when he got out of the car, he threw his water bottle at the fence.

“Get in the car,” I told him.  “I’m taking you home.”

But a few blocks up the road, Aaron begged me to turn around and take him back.  I did.  And a few miles up the road, my cell phone rang.  It was Aaron, who was crying as he told me that this time he threw his water bottle at one of the staff.  I turned around again, picked up my upset son…trying hard myself not to be the same…and took him home.  I zipped down to the nail salon, where there was by now a long wait, so I once again headed home to finish our packing and to deal with angry Aaron.

Aaron was spent and he was sad over his actions.  He walked in while I was loading some clothes into the washing machine.

“Mom?” he calmly asked.  “Can we start over and forgive each other?”

Of course, my heart melted as I assured him that we could most definitely do just that.  I had no idea how much forgiving was in my near future.

The remainder of that day was happy, but as bedtime drew near his mood changed yet again.  He was nervous as the actual day of our trip was now a few hours away.  Everything was irritating him, especially me.

More deep breathing for me as I stared down at my toes that did not have their needed pedicure.

The departure morning dawned with us having to awaken angry Aaron, who wanted none of this trip.  We were finally in the car, packed to the gills, with one quick errand for Gary to run before we left town.  I ran to the back of the car to adjust some things and had to smile at Aaron.  There he was, earphones already in use, with all his food and music and movies and coffee and pillow around him.

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We weren’t too far down the highway when Aaron decided to take a nap.  This was a good thing in more ways than one.

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And when he woke up, he was a new man.  He was happy and talkative…in a very nice way…ready for a rest area stop and full of new life.

Maybe we made the hard sell after all?!

We headed back down the highway again.

“Can we stop for lunch?” Aaron asked.  “At 12:00?”

Of course, Aaron wanted lunch at 12:00!  Those who know Aaron know that he will rarely eat lunch before 12:00.  There he was, sitting behind me, watching his core of the earth movie…wearing his sweater with his shoes off and his striped blanket over his lap…wearing his headphones…crunching on his peanuts…

Aaron very much wanted his normal to travel with him.  The reason he did not want to take this trip is because his normal is at home, not in the car and not on the road and not at Kyle and Andrea’s.  He feels no control when his normal is disrupted, and having no control is both scary and maddening to Aaron.  The behaviors we were seeing was, for Aaron, his normal way of expressing his loss of normal in his life.  But for us, it was very frustrating and exhausting to deal with his handling of these concerns.

It was classic Autism 101.  And we were just beginning our class.  We had no idea of the tests that were yet ahead.  Like these storm clouds south of Dallas, we were headed into an Aaron storm.

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The first one hit us about 40 miles from Houston, near the Sam Houston National Park.  Not rain and lightning, but red tail lights.   Those tail lights up ahead of us on I45 were not a welcome sight.  Traffic jam!  And not just a little traffic jam!  We were stuck there, creeping along very slowly, for over an hour and a half!

Aaron lost his happy.  We nearly lost our cool.  The day had totally gone downhill yet again.

“Can we just HURRY with this vacation?!” he asked.

Oh, if only!!

Finally, we pulled into Kyle and Andrea’s driveway.  We could hardly wait to get inside, to hug our kids and hug the doggies, to stretch our legs and our backs, and just be out of that car!  Except for Aaron, who angrily informed us that he was NOT getting out of the car and he was NOT going into Andrea’s house and that he WAS going to stay in the car all night.  Twelve hours in the car wasn’t enough for him?!

But I knew what was going on with Aaron.  He was a nervous wreck about going inside this new house that did not hold his normal.  Even the fact that Andrea was there didn’t help him at that point because her life in this strange house was just that…strange.  She was married now, she and Kyle living together, and all of it was just too much for Aaron.

Gary and I went inside to barking, ecstatic dogs…to hugs from Andrea and Kyle…to the smell of supper and the warmth of family.  But poor Aaron, still out in the car, was only anticipating a very unfamiliar and uncomfortable start to this vacation.

My heart went out to him even as I battled my desire to yell at him.  One day in, and this vacation was not the happy time that I had hoped it would be.

I went outside, where I found Aaron struggling to gather up and carry as many of his things as he could.  He would carry as much of his normal into this strange house as he could!  Finally, he headed toward the door, his arms as full of his blanket and movies and music as he could carry.

I got him in the house, then went back to the car for some things, and when I walked into the kitchen a minute later there stood Aaron, talking for all he was worth about the core of the earth.  It was so classic!  So totally Aaron!  And so lovingly Andrea as she sweetly conversed with him about a subject so out there…but again, so Aaron.

Andrea walked with us upstairs to the bedroom Aaron was using.  She had it fixed just perfectly, complete with a big soft stuffed dog bearing Aaron’s name, perched on the bed.  She knows her Aaron so well!  We showed him that Andrea and Kyle did indeed have outlets in their walls!  We got all his devices plugged in.  We showed him how his bed would be just fine…how there was a lamp on the table beside the bed…how he could see at night with the light from the window.  He was relaxing, at least a little, though still full of concerns.

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He didn’t want to come to supper, but finally he did come down.  He ate, all the while talking to Kyle about Star Wars matters.  Kyle engaged him perfectly on that topic.  Aaron was literally shaking all over, partly because of pent-up nerves and partly because he was SO excited to be talking about one of his favorite subjects with someone who knew all about it, too.

The next three days were quite a mixture for all of us.  Aaron was at one moment happy and funny, and the next might be angry and insulting.  He had some good times when Kyle’s mom, dad, and cousin came over for the 4th.  We ate burgers and watermelon and watched some fireworks.  He spent a little time here and there petting the dogs.  But he didn’t want to go anywhere, and we knew not to push him.  He was happiest when we went out to eat one night.  But we didn’t take him to the beach or a museum or shopping.  Heat and crowds and Aaron’s mood was a volatile mix.  It was not the vacation that I had hoped it would be.

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Aaron was more than ready to leave on the morning of our departure.  “I want to live in MY house, not HERE!” he declared.  Nice.

Aaron’s normal was spread around him on the back seat as we made good time leaving Houston and trucked up the highway toward Dallas.  But south of Dallas we saw them…the red lights of stopped cars!!

“Is that a JAM in the road?!” Aaron asked, almost in a panic.

“I’m afraid it is,” Gary answered.  And sure enough, we crept along again for over an hour due to an accident up ahead.

Later, in Oklahoma, we had another slow down for construction.  Aaron got so that every time he saw backed up traffic ahead, he would ask the same question.

“Is that a JAM in the road?!”

How perfectly that describes our life with Aaron…and not just on this vacation, but nearly every day.

We get jammed up trying to understand and manage Aaron’s behaviors…his way of thinking…his expectations…his demands.  We are forced to move at a much slower pace than we want because Aaron won’t respond to any other speed than his own.

“Oh, he’s just autistic!”

That’s so easy to say, but wow, the complexity of what this autism involves!

I cried twice at Kyle and Andrea’s.  Cried out of sheer frustration, disappointment, anger, and sadness.  Cried because I realized how tied down and unusual our life is with Aaron.  Then came guilt because I felt that way.

UGH!!!!!

I was anxious to get back in my Bible on Monday morning.  Nothing comforts me and encourages me like opening God’s treasure chest full of His words.  One thing I read in a devotional book I’m using was Psalm 12:6:

“And the words of the Lord are flawless, like silver refined in a furnace of clay, purified seven times.”

Boyd Bailey said, “The Bible is our handbook for holiness and happiness.  We steward it well when we honor it above our own wishful thinking.”

My wishful thinking about life with Aaron isn’t what often honors God or helps with our big road jam.  But when I read the Bible and listen to God, I do find what Boyd Bailey also says:  “We listen for instructions in our obedience.  We listen for encouragement.  We listen for rebuke.  We listen to the Lord’s flawless words because we know we are loved by Him.”

The traffic jams on our road with Aaron will continue.  They will come and they will go.  Up and down.  I mess up.  I don’t have all the answers.

But I know where to go for all that I really need, and for God’s Word and for His love I am ever grateful.

God knows the road ahead for us with Aaron.  The map of His Word will guide our attitudes as we journey.  God will go before us, behind us, and most importantly He will be beside us.

There isn’t a jam in any road that’s too big for God!

 

 

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 Hard Parts

Tuesday was my birthday, and an early gift for me that morning was that Aaron got out of bed much earlier than the day before.  Why is that a gift?  It’s a gift because having to wake Aaron up to get his day going often brings anger from him, but if he gets out of bed on his own it usually comes with a far improved mood…from BOTH of us!

Aaron’s bedtime logbook that he faithfully fills out every day shows that he got out of bed at 7:16.  Not 7:15.  7:16.  I just wanted to be sure that I was clear on that point, since Aaron is forever and always very clear and precise about his times.

My memory logbook in this brain of mine has recorded that on Monday, Aaron did not get out of bed at 7:16.  He was sleeping soundly on that morning, so I had to wake him up, which can be very tricky.  Being awakened by Mom is not on Aaron’s list of Happy Ways to Start My Morning.  It’s not on my happy list, either.  That’s because there is almost no way for me to get Aaron to wake up that suits him.  Monday was a rather angry morning for Aaron, but he did go to his day group and I was thankful for the reprieve.

So, Tuesday was wonderful!  Aaron was happy, not at all because it was my birthday but because I did not have to talk to him in my weird voice…or shake his leg…or look at him with squinty eyes…or any of the other very irritating manners that he thinks I demonstrate when I’m working to get him out of bed.

I offered to fix Aaron some French toast since we had time and since he loves French toast.  He readily agreed, so while he showered…in whatever form that process took that morning because we’re never quite sure…I began the French toast.  Later, as Aaron sat down to eat, I saw him immediately place something from his plate onto the table beside him.  Can you see the little dark spot there on the table near his plate?

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I knew what it was.  The small glob was a piece of the toast that had cooked harder than he likes.  Aaron always places hard parts of food off his plate because he will not eat them, and he doesn’t want them near his food that he IS eating.

Later, when we were both done with our breakfast, I saw that on his plate was one more bite of French toast.  I told him he had one more bite to go as he got up from the table, but he told me that he didn’t want it.

“It has those hard parts, Mom,” he explained.  I didn’t push the issue or make a big deal about it.  After all, why ruin our good morning over one bite left on his plate?

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But as I looked at his plate, I thought of how much like life those hard parts are.  Hard parts are most definitely a real part of all our lives.  I wish I could just have all the plump, juicy pieces that are easy to swallow.  But no, it doesn’t work that way.  Life, all too often, seems to have way too many of those hard parts.

I remembered those set-aside pieces the next day as I took Aaron to his Epilepsy doctor appointment.  It was time for more blood work for Aaron, so after his doctor visit, we walked over to the building next door and went up to the lab. We’ve been very blessed that Aaron, from the beginning of his seizures at a young age, has always liked watching the needle go in his arm.  Even when it hurts, Aaron wants to watch each time.

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I looked at him sitting there, taking it all in, and I suddenly wanted to cry.  I wanted to cry because he looked so vulnerable.  We get used to all these doctor visits and needles and medicines and tests, but today it was like I was seeing it all fresh and new.  He was my little boy again, with his life ahead of him…all of us unaware of all the hard parts that were ahead.

Soon we were waiting on the elevator, Aaron more than ready for lunch at Applebee’s.  The door of the elevator opened.  I hesitated to get on because there was a woman in a wheelchair inside, plus the nurse who was pushing her, plus another woman, plus a man.  That’s a lot of pluses!  The woman in the wheelchair saw our hesitation.

“Come on in!” she cheerily said.  “I won’t bite!”

I laughed, told Aaron to follow me, and we stepped inside.  I stood in front of the woman in the chair, facing her.  I saw then that she was on oxygen.  She was wearing a hat to cover her bald head, and her skin had the unmistakable chalky look of advanced cancer.  I thanked her for letting us crowd in, and then I asked her how she was doing.

“Oh,” she said now with weariness, “I’ve been better.”

“I’m so sorry,” I told her.  I wanted again to cry, and I hoped she knew that I cared.

As the elevator stopped and we all went out into the hall, I saw that the man from the elevator was walking with a badly deformed leg, or maybe a prosthesis under his pants.  His walk looked so painful.  And there outside the front door was a van from a hospice group, waiting to take the sweet cancer patient to her destination.

Hard parts.  All around me were hard parts.

Still fresh in my heart was the message from a friend about her impending divorce, received that very morning.  Other concerns for family and friends weighed on my mind…death, loneliness, health issues, fears, financial problems, job concerns.

Do I sound depressing and dreary?  I don’t want to leave it there, because for those who know God and follow Him, these hard parts are also precious parts of growing closer to our Savior.  Jesus suffered, and so shall we suffer.  But we have hope because we know that God is in control of every part of our lives…the easy and the hard.

This hope isn’t like saying, “Oh, I hope that works out.”

NO!  This hope is a certain expectation that all WILL work out according to God’s will, for our good and for His glory.  The outcome may not work out exactly as I want, but my wants are not nearly as important as God’s will.

Is Aaron cured of his Epilepsy?  No.

Is Aaron cured of his autism?  No.

So, how do I handle those “no” answers?  I handle them by fully embracing that a “no” answer is still God’s answer to me.  I trust Him to know best.

And I don’t try to push those hard parts out of my life and out of my heart.  I accept their reality with God’s grace.

Of all the Aaron issues that we deal with, his behaviors are by far the hardest to handle with love and wisdom.  Gary and I get tired…frustrated…overwhelmed…angry.  But Aaron is the whole package, the easy and the hard.  The sad and the hilarious.

We wrap our arms around Aaron and love the whole person, seizures and autism mixed in with all the rest.

Like Jeremiah said:

“Blessed is the man who trusts in the Lord, and whose trust IS the Lord!”

              “You are my refuge in the day of disaster.”

And so must each of us see every part of our lives as just the right mixture that God intended, and not try to remove the parts that are hard as being too hard to handle.  Go in God’s strength and trust Him.

 

 

 

 

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!”

 

The WHAT Bite?!

Doctor visits with Aaron are always very interesting, but this one was also TOO funny!!

He Said What?!

When writing about life with Aaron, I have often mentioned how he rubs his hands together.  He does this when he is excited, happy, nervous, or when deep in thought as he concentrates on a particular something that captivates him or requires him to focus.  When he is excited or happy or nervous……and even when he’s angry……his hand rubbing is usually very fast.  I wouldn’t be surprised someday to see smoke rising from his blazing hands!  But when he is deep in thought or totally focused on something, his hand rubbing is slow and calm.  It’s then that one can really see the intricate movement he makes with his fingers.  The whole process is very fascinating.

While in Houston recently visiting Andrea, she and I were able to watch Aaron as he listened to some of his favorite music.  He was totally engrossed in listening to Celtic Thunder, matching each…

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