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!