Fixing the Broken

Last night I felt like this:

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Mangled.  Broken.  Greatly in need of repair.

These were Aaron’s glasses a couple weeks ago after an incident at his day group.  Mixing all the various special needs can at times be volatile.  Even I, who have dealt with many pairs of broken glasses, was surprised at the level of damage done to this pair.  I honestly wasn’t sure that they could be fixed.

I took the rather hopeless mess that used to be glasses into our eye doctor’s office a couple days later.  I hoped that maybe, just maybe, they really weren’t beyond repair.  The kind technician couldn’t hide the look of surprise on her face, which didn’t fill me confidence that anything could be done for them.

Imagine my surprise, though, when before long she returned with this:

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WOW!!  Talk about a miracle re-do of what I thought was hopeless!  She received my profuse thanks with a smile on her face and the comment that she loved a good challenge.  I’m thankful that she did, indeed!

Being the mother and caregiver of an adult special needs “child” with behaviors can be exhausting…physically, mentally, emotionally, spiritually.  I believe that about covers it.  And while I don’t want to come across as complaining, facts are facts and truth is truth.

If there’s one thing I’ve wanted to be on this blog, it’s truthful…truthful without being unkind to Aaron in my honesty.  Talking about being truthful, Aaron is just that…at least in his mind.  He has few filters, and totally does not get social norms.  He is often unaware of other’s feelings.  He gets stuck in his own mind about certain issues and is truly stunning in his inabililty to switch gears and judge those issues with good reasoning.  His own comfort is paramount to him, most of the time, so if his comfort is interrupted or his wishes unmet, we are often met with his anger.

And I get tired.  I get angry.  I did last night, when Aaron who had been happy decided to be rude just before bed.  He and I didn’t have our normal cheerful bedtime routine.  He was still out of bed, on his computer, when I went to bed.  I didn’t even challenge him.  I have no idea when he went to sleep.

I spent time with the Lord this morning, reading about the compassion of Jesus and knowing that I needed that same compassion for Aaron.  Somehow, it’s easier to show compassion for ones I seldom or only occasionally see.  Showing that similar level of compassion for Aaron can be very hard to do over the long term, day after day.

I was very surprised this morning to hear Aaron’s floor creaking before 7:30. Most mornings I must roust him out of bed…very unhappily on both our parts, I might add.  I thought this morning he would definitely be a hibernating bear, but no, he was awake and downstairs early.

He knocked politely on the bathroom door, and when I opened it with some dread, I was so relieved to see him with bright eyes and a sweet smile.  He even received the hug I offered!  We were off to a good start!

We sat in the living room, enjoying the warm fall decorations and soft twinkling lights.  I had intended to sit there and pray, but sitting with Aaron was important, I knew.  We talked softly about some of this and some of that.  Then Aaron decided that he could take his pills, but I reminded him that it was too early.  He wondered why, and once again I explained how he really should take them about 12 hours apart.

“So, Aaron, it’s nearly 8:00 right now,” I began.

He immediately looked at his left arm, pushed up his sweater sleeve, and gazed down at his wristwatch perched halfway up his arm.  I just watched with a smile on my face, waiting for what I knew was coming.

“It’s not 8:00,” he blandly stated as he stared down at his watch.

“Well, I just meant that it’s ALMOST 8:00,” I explained.

“It’s 7:41,” he flatly continued.

Gone was the lesson on the 12-hour rule.  Gone was my caring at all at that point about the 12-hour rule!  In its place was my laughter, deep from inside…much needed laughter.

And Aaron tolerated my laughter, even though he had no idea why the time of 7:41 made Mom laugh.  Many times, Aaron gets angry when I laugh, so I don’t…until he is out of earshot.  But today Aaron let me laugh.  This was a gift.

Later, we sat at the table where Aaron ate a plate full of fried eggs with the yellow hard the way he likes them and where he talked and talked and talked…about separatist droid armies and Trandoshans and commandos and clones…and anything but heart matters.  Or the 12-hour rule.

But it was good.  Very good.

It was our normal.

And it was a gift.  A gift from the same God Who also fills our hearts…my heart…with love and compassion for our Aaron.

I know all too well that we’ll have this again:

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But I also know that we’ll have this:

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Thanks to God who fixes our broken!

“He heals the brokenhearted and binds up their wounds.”  (Psalm 147:3)

 

 

 

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!

 

Mother’s Beautiful Hands

This past May our mother passed on to heaven.  We said our final earthly goodbyes to her on May 8, and thus began our year of those firsts.  Many of you know them…those first special days that you spend without that special person.  Our first “first” came quickly.  Mother’s Day occurred just two days after Mom’s funeral.  Isn’t that just like life?  Life doesn’t wait on us to get ready for the things that are hard.  They happen whether we’re ready or not.

Our next first is tomorrow.  Tomorrow is Mom’s birthday.  She would be 89 if she had lived to see this day.  I know, though, that none of us wish her back.  We had been saying goodbye to her for a long time as the symptoms of Alzheimer’s overtook her brain and body.  What a sad disease it is!  Alzheimer’s takes a person slowly, robbing them of their essence and their personality and their memories.  I’ll never forget going to see Mom last year, in June of 2014.  When Gary and I entered her assisted living apartment with Jan, Mom not only didn’t know us at all, but she didn’t even show any joy that we were there.  She would usually at least act happy to have visitors, but on this visit she was completely devoid of even that.  For the first time, I did indeed feel like a visitor…..and an ignored one, at that.

Our visit that June was also the one where we gathered around Mom in the kitchen at Jan’s house as we sang hymns. Mom sang with us, surprising us all.  That time was deeply precious to each of us, including Mom.  Her eyes lit up as she sang.  She smiled and she tried to express what she was thinking about each song.  She remembered words very well, and we knew that each song resonated with her deep in her heart and mind.

 

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Before we left that evening to go on our separate ways once again, Mary Beth wanted us to all put our hands on the table together and take a picture.  I’m so glad we did that.  Something about that picture is so personal…so tender.  There is our mother’s hand, nestled among her children’s.  Her hand shows the effects of age…of hard work…of arthritis.  But her hand is beautiful.  And us…our hands also show the signs of age that are creeping upon us.  You can see some spots…some lumps on our joints…and several of us have that funny little finger that Mom had.

 

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I look at that picture and I think of how Mom’s hand was always in our lives.  From an early age her hands were ever busy with caring for us five children, and for Dad.  I remember her hands cooking and baking, sewing and cleaning, caring for sick children and looking after busy children.  She used her hands to show us how to make little troll doll clothes out of felt while she sewed real clothes for us to wear.  She used her hands to let us turn the handle on the food chopper as she made Cranberry Salad for Thanksgiving.  She used her hands to fill our table with huge baking sheets of homemade rolls while she pinched off little pieces of dough for us to happily eat.  She used her hands to teach us how to set a table and how to wash dirty dishes after loading the sink just right.

Her hands wiped our tears…and sometimes caused our tears as she spanked us for disobedience.  Her hands worked to grow beautiful flowers and delicious vegetables, which she froze and canned and cooked and shared with others.  Her hands taught us how to do the laundry and to fold the clothes correctly.  Her hands taught us to iron whatever she had placed in our four baskets, each basket bearing the name of one of us girls.  Where was John’s?  J  Her hands taught us how to clean a house, how to hem a dress, how to play some of her favorite card games, how to make a bed the RIGHT way, how to take care of our varied pets, and how to plan the many practical jokes for which she was famous.

Perhaps the most important use of her hands was when she would open her Bible in the early mornings as we all sat around the breakfast table.  Dad would have already gone to work, so before we left for school, Mom would be sure that we all opened our Bibles as she did.  She would read from the Our Daily Bread devotional book, reading the selected Bible passage first and then reading the devotion before we prayed.  Her commitment to God and to us was never more evident than during that precious time together every morning.

Her hands made each of our wedding dresses and bridesmaids dresses.  Her hands cared for us after each of our children was born.  Her hands loved and doted on her grandchildren and great-grands.  Her hands knit literally countless numbers of Christmas stockings for family, friends, friends of friends, friends of family, pets……you get the idea.  Her hands quilted each of us a totally handmade quilt after she retired.  Then those always busy hands made, again, an untold number of quilts for others to enjoy.  Her hands took meals to shut-ins.  Her hands stuffed envelopes for the Crisis Pregnancy Center, for missionaries, and for church.

Her hands cared for Dad for eight years as he fought cancer.  And it was her hands that he wanted to scramble his eggs that he loved during the final few weeks of his life.  Only her hands would do, and I understood that totally as I stepped aside and let her do this thing that she loved so much.  It was in their little kitchen that I noticed her hands doing things differently than she had ever done…and I knew that the Alzheimer’s was lurking, waiting to overcome her in the following years.

Her hands worked hard to care for Dad during that final month that he lived.  He preferred her hands above all others, but he knew that she was struggling, and so he allowed Jan and I to help as well.  But it was Mom’s hand that he reached for as they sat on the couch.  It was Mom’s touch that comforted him when he was so sick.  It was Mom’s hand that he held as he lay in his hospital bed…..her hand reaching through the bed rails as she lay alone in their bed beside his hospital bed.

 

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Jan took one last picture of Mom’s hands as she lay dying this past May.  There they were, crossed on her lap, still and un-moving.  She was nearing the end of her time on earth.  Her hands, though, spoke volumes to all of us.  I’m again so thankful for the picture that Jan took.  Her hands showed the evidence of years of love and work.  Now her hand’s work was done.  It was time for her to rest.

 

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But the work of her hands will never be done.  Her work in our lives does indeed live on.  So much of who we are and what we are is because of her beautiful hands in our lives.  None of us King children would be who we are today without the influence of her godly, kind hands.  Then our children, and their children, show the impact of Mom’s hands.  What a treasure is to be seen in those soft, wrinkled hands!

I’m pretty sure that her hand is now holding Dad’s hand in heaven.  I doubt that they’ve let each other go since she’s joined him there.  Unless there’s work for her to do, and then I can totally see her using those hands to make something or to keep things straight.  I wonder how many quilts she’s made by now?

The Proverbs 31 woman was described as one who works with willing hands.  Our mother did just that, and for the rest of our lives we will benefit from her wonderful, willing hands in our lives.

Happy Birthday, Mom.  Thank you for your beautiful hands in our lives.  You will always be loved.

 

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 Normal Thing

One evening we were eating supper and Aaron was talking.

That sentence makes me laugh because I could just leave the first part blank – to be filled in, you know – because any place and any time and any meal and absolutely ANY scenario could easily end with:  “…and Aaron was talking.”

After all, the name of this blog IS, “He Said WHAT?!”  I write about lots of other things, too, but I started out wanting to convey the amazing way that Aaron expresses himself.  Sometimes he is not only amazing.  He is also funny, maddening, complex, insulting, and so many other adjectives.

Anyway, we were eating supper and Aaron was trying very hard…and largely succeeding…in monopolizing the conversation.  I don’t remember Aaron’s question to Gary, but Gary decided to answer in a joking way.  Gary must have had a momentary loss of focus or memory.  Aaron rarely appreciates joking, at least not joking in the way that we…and all of you, no doubt…would understand.  Most joking does not compute in Aaron’s autistic brain.  Instead, he is most often angered by the give and take that the rest of our family enjoys.

So, when Gary offered a little joking response, Aaron’s response was not at all light and funny.

“Dad!!!” Aaron responded.  “I’m trying to talk a NORMAL thing!!!”

Oh, how I wanted to look at Aaron and ask, “Aaron, please define normal!”

Aaron’s definition of normal would most assuredly not be our definition of normal.  And that’s OK, really.  It’s just that sometimes we have a hard time not bending over in a belly laugh when Aaron responds to one of us as he did.  Instead, Gary and I share a fleeting look of understanding with each other…a slight and very quick smile so that Aaron won’t notice…and wait until later to laugh at the whole situation.  Or sigh, very deeply.

But we can’t sigh when Aaron is around.

“Mom!!” he said once after I sighed.  “Don’t breathe madly!”

You would think that if Aaron notices my sighing then he would also notice and then copy how to engage in conversation, joking, excitement, and all sorts of other regular communication.  Yet that element is often missing from Aaron’s abilities.  It’s one of the mysteries of the autistic brain, that lack of being able to connect the social dots like you and I do.

As I mentioned earlier, our joking often sets Aaron on edge.  But what Aaron thinks is funny is usually not at all funny.  Aaron thinks it’s funny to whack a person on their bottom, for instance.  I’ll never forget the day he hauled off and whacked a resident doctor in the hospital.  That was an interesting moment, and so embarrassing for me.

And Aaron’s response when corrected was, and always is, this:  “But I was just trying to be funny!”

We had this recurring scenario one day, with Aaron telling me he was just trying to be funny, when I repeated what I often say:  “Aaron, what’s funny to you usually isn’t funny…at all!”

He looked at me for a few seconds and then answered:  “Mom, I don’t know what I could use as funny.”

And THAT is a very true statement!  It’s also a very insightful look into what makes Aaron tick.

Yet Aaron truly is very funny sometimes, although he doesn’t know that he is.  He says things in such unusual and comical ways, but we often can’t laugh because we don’t want him to be self-conscious or to get angry.

A couple examples from this past week:

“Dogs are more trainful than cats.”

 

After dumping Parmesan cheese on his pizza:  “Mom, you’ll need to  buy some more of that spaghetti powder!”

 

And a favorite from the past, after I once again reminded him not to ever ask a girl how much she weighs:  “Mom, I didn’t ask Tiffany how much she weighs.  I asked her how much she eats!”

🙂  🙂  🙂

Aaron’s talking can also be very draining to Gary and me.  Sometimes we try to slip out of the house without Aaron hearing us.  We sneak out the garage door, closing the door to the house as softly as possible, and then we sit on our front porch for a few minutes to ourselves.  We feel like two teenagers who are trying to sneak out without permission, and it makes us laugh.

 

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But usually it isn’t long before we hear the unmistakable sound of Aaron in the house, clomping down the stairs and most certainly looking for us.  He has something he must say and so he searches until he finds us.

Here he was one evening, standing on the sidewalk talking to us as if he was on a stage and we were his audience.

 

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His subject was no doubt something like Star Wars and the Jedi Knights…or Transformers…or whatever else he was playing on his computer.  Talk of androids and Anakin and Padme’ and Darth Maul…of Sith Lords and Jedi knights and clones and Queen Amidala…of light sabers and droids and the force and motherships.

His excitement builds as Gary and I slip further into a stupor.

 

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Aaron doesn’t notice our glazed eyes or fixed looks.  He’s having his version of fun!  But then the dreaded happens!  He asks us a question.  And we just look at him blankly while he, at last, is quiet as he awaits our answer.

Our brains scramble to link up to the last thing or person or alien or whatever that he was talking about.  If it’s a person, my usual answer is actually a question:  “Ummmm…is he a good guy or a bad guy?”

Aaron happily answers me, and once again he is off and running – thankful for any engagement from me or from Gary.

Ah, yes, we’re having Aaron’s version of talking a normal thing.

But sometimes…sometimes…Aaron is quiet, like he was on the porch during this rainy moment.  It was such a sweet moment, too.

 

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And I am reminded that Aaron needs me and Gary to understand his normal and to, when possible, allow his normal to be our normal, as well.

WHACK!!

Except for that.

Sigh.

 

 

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!

 

 

Included

Last night, I peeked into Aaron’s room and saw this:

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THIS…is Aaron finishing The Meg movie by watching the credits.  He keeps his eyes glued to the screen as if he is looking at the most pivotal part of the movie and wouldn’t dare look away.  He knew that I was getting ready to go downstairs so that he and I could watch our nightly show.

“Mom, I’m almost done!” he said.  “It won’t be long!”

To Aaron, the credits are a part of the movie.  He will not end a movie when most of us say that a movie is over.  No.  The movie is over only when the credits end.

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If Aaron starts something, he will finish it in his Aaron way.

Aaron has started something else recently.  It’s not the first time we’ve seen him start this thing, but it’s the most recent.  It’s not something that we can touch or see, but it’s something that we definitely hear.  And feel…because Aaron feels it deeply.

I can explain it by telling what happened a few weeks ago.  We were eating breakfast on a Saturday morning on our patio.  Gary prayed before we ate.  One thing he did was to ask God to take care of us, and also to bless and take care of Andrea and Kyle, and Andrew.  He named them, but for us three sitting at the table, Gary just said “us.”

No big deal, right?  Wrong.

Aaron’s head popped up after the prayer and immediately he said, “You don’t also want to love ME?!”

Gary NOT using Aaron’s name did NOT sit well with Aaron.

We talked about why Gary called us “us,” and explained that it had not one thing to do with not loving Aaron.  Aaron finally hushed about it, but we could tell he wasn’t totally convinced.

Like I said, once Aaron starts something, he will finish it…sometimes weeks later.  And even if we think it’s finished, one more little part of it may emerge at any moment.

Aaron has a very difficult time expressing his deep feelings in conversation.  He also has a blind spot when it comes to seeing how he is affecting others at times.  But to be so unaware of other’s reactions, he sure can see a difference sometimes in how we talk to him compared to how we talk to our other children.

For instance, when I’m on the phone with Andrea, Aaron will almost always stand beside me at some point and want to talk to her.  He waits and waits until I let him have the phone, or turn it on speaker, and then he goes on and on and on about his latest movie or game.  He doesn’t ask her about her life but gets his satisfaction by doing all the talking.  Andrea responds so well, and Aaron loves it.

But Aaron has also observed that the way I talk to Andrea, and she talks to me, is different from how we talk to him.  He doesn’t get why it’s that way, and he really isn’t able to change it, but he does know that our interactions with each other are not what they’re like with him.

This has been bothering him lately, and he’s been comparing himself to her or to Andrew.  Therefore, he strives for attention…and Gary and I strive to give him a share of our attention while we are getting more and more tired of the striving.

The other night, Gary and I snuck outside and sat on our front porch.  Just the two of us.  Talking.  Uninterrupted.

But then we heard the door in the garage close.  Aaron popped around the corner.  We were caught!

There Aaron stood, talking and talking and talking.  Talking about Terminators and Trandoshians and clones from the Delta squad and visor modes…

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Our brains freeze and our minds wander when Aaron talks non-stop.  Then he asks a question, waiting for an answer, and we do a mental hustle trying to remember what on earth he was talking about.  It’s a scenario repeated so often, and one that Aaron so often interprets as a lack of interest on our part.

A couple nights ago, Andrea texted during supper and sent us a picture of what is growing on the mystery plant in their yard.  Grapes!  It was fun to see the picture as we’ve all wondered if the plant was a grapevine.  Gary and I were happy!

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Then yesterday, she sent a picture of their first onion harvest from their backyard garden.  And again, we were happy.

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But Aaron was not happy.  Once again, he sensed more enthusiasm from us about Andrea’s life than his.  And once again we were doing damage control for much of the evening.  UGH!!

This morning, Aaron was up and on his computer at 4:30.  That’s 4:30 A.M!!!  I got him to go back to bed, but he was up again not long after.  And as I talked to him, he mentioned Andrea and her things and he hoped she wouldn’t call.

I sighed.  But not where he could hear me.  He heard me sigh once when I was on the verge of anger.

“Don’t breathe madly!!” he commanded me.

I went to the kitchen this morning, and then decided to do the hard thing that I didn’t feel like doing.  I walked back upstairs to Aaron, sitting at his computer.

“Hey, Aaron,” I said.  “Do you want some eggs and bacon?”

He did.  So later, there we were, sitting at our kitchen table eating eggs and bacon.  I wanted to be having my quiet time and talking to God, but here I was having a not-so-quiet time and talking to Aaron.

But before I prayed over our food, Aaron blew me away by what he said.

“I just want to be included,” he said.

That was truly amazing!  And as we ate, I was able to assure him that he IS included in our lives.  Yet no number of words coming from my mouth gave him assurance of that fact as much as my listening to HIS words coming from his mouth.

Really listening.  Asking questions.  Looking at his Ironman Guide Book that he ran and got from his room.

The flying fortress.  AIM.  Girl face statues.  Titanium Man.  The frozen ship.  The brain controls that make you dizzy.  And oh, SO much more!

Then I got a text on my phone.

“Better not be Andrea,” Aaron muttered.  “Like her grapes and onions!”

I wanted to laugh but knew better.  And I know better than to think that this inclusion and being loved business is settled.  I know it isn’t. But I was very touched by how Aaron calmed and responded when he knew he had not only my full attention, but my full interest.

The credits on this part of Aaron’s life movie are still rolling, and we must show interest…and also guide him to know when it’s time for a break.

And that a break doesn’t mean exclusion!

God, give us and so many other parents like us the grace to love ALL our children just the same, even when the expression of that love is anything but the same.

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