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.

 

IMG_0668

 

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.

 

IMG_0669

 

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.

 

IMG_0670

 

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.

 

IMG_0814

 

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.

IMG_0991

 

 

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.

IMG_0997

 

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.

IMG_0998

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.

IMG_1002

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.

IMG_1006

 

IMG_1010IMG_1035

 

 

 

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:

IMG_0712

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.

IMG_0714

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…

IMG_0670

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!

IMG_2618

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

IMG_2621

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.

IMG_0713

 

 

 

Work, Work,Work!

I believe every family has sayings that have been passed down over the years – sayings made by family members and then repeated again and again.  Often these comments are funny, laughed at every time they are uttered as memories of the person and the situation surface once more.

One of our family favorites is a comment made by Aaron years ago when he was very frustrated by having to pitch in and do some work around the house.

“Work, work, work!!”  he exclaimed.  “All I do is WORK!!”

No one understands the humor of his statement like we do.  That’s because we all knew…and know…Aaron.  He worked the least but complained the most.  Now when one of us repeats that phrase with great emphasis, we all just laugh and shake our heads…just like we did when Aaron first said it.

I do believe we now have a new phrase, thanks once again to Aaron.  Another one of many he has left us over the years, trust me.

Two weeks ago, Gary and I were packing up our vehicle for our annual trip to Houston.  We travel there every April to see Andrea and Kyle, and with the added bonus of spending time with Andrew, who is there for an NHRA race.

IMG_0483

 

IMG_0560

 

This year we were taking lots of Andrea’s “stuff.”  That’s because she and Kyle are married now, and have a house, so her “stuff” is hers once again.

We had many loads to carry out and put in our vehicle.  Aaron was in the middle of all of it, talking and hovering, hoping that none of this activity was going to eat into our normal evening routine of watching a DVD or show.  He seems to think that his presence will continually remind me that he is my priority.

So, we put him to work.  He was willing to do so, thankfully, and really was a huge help.  He helped lift the heavy electric piano into the van, as well as carrying box after box outside for us.  Eventually, though, as we were nearing the end, Aaron’s impatience started to surface.  He knew that I still had other things to do before we could watch a show.  Bedtime was looming.  His routine was already a mess, and his nerves were showing.  He was excited at our leaving, with thoughts of all the restaurant meals awaiting him and his caregiver during the week, but also anxious at our being gone and his normal life being a little unhinged.

Aaron never offers to sit and talk about his feelings.  Goodness, no!  He doesn’t even understand what’s going on in his head and heart.  But he does SHOW his feelings by usually hurting ours.  Or by being confrontational, rude, stubborn…you get the picture.

His happiness at helping had turned instead to blame.  He blamed his anger on us for making him work.  He and I worked through all that for the most part, watching our show as he calmed somewhat, but then as I tucked him into bed later, he erupted again.

“Mom!!” he said.  “You made me do servant work!!  I don’t like SERVANT work!!”

It was so hard not to laugh!  But believe me, all of us…minus Aaron…laughed a lot about what he said as we spent a few fun days together.

Servant work!  Indeed!

In the week since we’ve been home, I’ve seen the other side of Aaron…the side that enjoys helping us.  He wanted to help me cook supper one night, and then to send a picture to Andrea – who told me that it looked I was making Aaron do servant work again.  😊

IMG_0591

He also wanted to share his Sonic mint with Gary that evening, so he put it on Gary’s supper plate.

IMG_0592

This past Saturday, he asked if he could help me with some pruning.

IMG_0623

He often takes our recycling to the container; brings down his laundry; sets the table; and other chores around the house.

Aaron is usually happy to help when things are going the way he wants.  But when his version of normal is anything but, then helping becomes “servant work.”  Not fun…not to be expected…not to be done!

I look at myself and I see this attitude of Aaron’s in me more than I like to admit, especially when it comes to caring for him.  I’ll be honest.  Taking care of a special needs child, even your OWN special needs child, is not all halo moments where we feel or act like angels.

Oh, my compassion is through the roof many times.  Like when I sat in the ER with Aaron for five hours four days before our Houston trip, waiting for him to be admitted to the hospital for seizures the day before and very low sodium.  Thankfully, we were sent home when his sodium level increased.

Home, where Aaron had a very long and a very scary seizure that evening.

IMG_0449

His seizures, injuries, staples, stitches, missed fun days, so many meds, the look on his face as he held his Subway sandwich on our drive home…so many times my heart just breaks for him.

But then he has those behaviors, rigid routines, expectations of me, nonstop talking at times, anger…

Seizures that keep me home, having to change all my plans…and his.  Extra laundry, sadness, worries for now and for the future…

A life unlike most of our peers for me and for Gary.  Not able to up and go, to travel at will, to plan for a fun life of retirement trips.

Special needs parents weren’t given our children because WE’RE so special and God knew we could do this.  God wants us to see that HE is the special One that we need, and that in no way could we live this life without Him and His grace and His strength.  Goodness knows I have none of my own.

Many times, and many days, this life that God has given me can only seem like “servant work.”

But really, there are two kinds of servant work, and it’s my attitude that determines which I will experience each day…each moment.

When I think of how God wants me to serve in every situation, and when I do this servant work with that in mind, my attitude is one of inner joy and peace – even if outwardly things are crazy, and I am frustrated.  My goal then isn’t about ME.  It’s about Aaron, and to serve him in a way that pleases God.

But when I get in my own way and take my eyes off God…and like Aaron, things aren’t going the way I want…then I sometimes get angry and frustrated.  When I do this, all too often, then I’m doing “servant work” in the way Aaron meant.  Unpleasant, yucky, unhappy work that makes me bitter.

So, to all of us…and ESPECIALLY to my special needs parent friends…know that God understands.  Just talk to Him when you’re exhausted, when you blew it, when you yelled at the child you love so much, when you’re envious of other’s lives, when you’re out of money and patience and even hope – just talk to God, lean on Him, and then know that each day is a new day.

A new day to do servant work, the way God intended.  After all, we have the best example in Christ.

“Have this mind in you, which was in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but made Himself nothing, taking the form of a SERVANT, being born in the likeness of men.”  (Philippians 2:5-7)

Servant work is God’s work, really.  And He’ll give us what we need to do it the right way, every day.

IMG_0616

 

 

 

 

No More Dog

Yesterday was the day that Gary and I have talked about and dreaded for so long.  We had to say that final goodbye to our precious Great Dane, Jackson.

Wichita-20110712-00113

What a beautiful and wonderful dog he was to our entire family!

Wichita-20120114-00064

 

In 2007, Andrea really, really, really wanted a dog…a BIG dog!  Gary and I really, really, really weren’t sure.  But finally, we said yes and the rest is history.  Jackson was born in May of that year, so he lived a good and long life of nearly 12 years, surpassing the normal life span of a Dane.

977988_472377846170058_1661375408_o (1)

 

977903_472377092836800_756937793_o

 

After a few years, Andrea moved to Texas for grad school, and stayed there for career and now marriage.  Jackson stayed with us and enjoyed visits over the years from Kyle and Andrea’s doggies.

20130105_165844

 

IMG_0020 (1)

 

IMG_0121

 

Aaron loves animals and Jackson was his special friend.  Patient, kind Jackson tolerated Aaron’s noises, Aaron’s behaviors that sometimes scared him, and other behaviors that pleased him – like Aaron’s knack for sneaking him table food and doggie treats.

20130902_091050

Jackson also at times showed concern for Aaron’s seizures, such as in this picture shortly after Aaron awoke from a seizure.

WP_20171215_16_15_56_Pro

 

Many of you have asked how Aaron handled this loss of Jackson.  Gary and I talked so much about how to tell Aaron when the time came.  For months, Aaron knew that this possibility might become a reality.  We talked about it a lot, but when our decision came, and the appointment was made, it was hard to tell Aaron that the “maybe” was now going to happen the next day.

We told him at supper on Monday that on the next day we were having to put Jacks to sleep.

“I don’t want to put him to sleep,” Aaron said.  We told him that we agreed but we listed all the reasons it was necessary.  Aaron was mostly quiet about it then.

As I tucked Aaron in bed that night, he said again that he didn’t want to get rid of Jackson, as he put it.  But Aaron knew it was not going to change, much as we wished it could.

The dread hung over us all day yesterday, like a gloomy cloud.  I wondered what Aaron would do when he got home from his day group, knowing that in a short while we would take Jackson to the vet.

“Can I give Jackson some treats?” Aaron asked.  So, I told him to go ahead and give him all the rest of the chicken jerky treats in the bag, which were mostly small pieces, but to give them to him slowly.  Of course, this happened.

IMG_0319

Jackson was thrilled!  And so was Aaron, most definitely!

The time came, much as we wished it wouldn’t.  Gary and I got Jackson ready to go, making a potty stop in the yard.  I ran up to Aaron’s room while Jackson sniffed outside.

“Aaron,” I said.  “It’s time to take Jackson.  Do you want to say goodbye?”

“No,” Aaron flatly said.

I told him that I understood and said we would see him soon.

Gary sat in the back of the van with Jacks, keeping him from falling as he was so prone to do.  I pushed the button to close our garage door and was backing out of the driveway.  Just as I got on our road, I looked and saw that our garage door was opening.

“Good grief!” I said.  “We don’t have time for this!”  I thought our door was malfunctioning.

So, as I pulled back into the driveway, with the garage door opening, I saw legs.  And as the door fully opened, there stood Aaron in the middle of the garage…right at the open door…his right hand in the air, waving back and forth.

Bless his heart, he had indeed wanted to say goodbye.  I will never forget that image of him standing there waving his hand to his buddy.

I opened the side van door, and Aaron walked outside.  He stuck his head in the door.

“Bye, Dad!” he said.

He couldn’t bring himself to say the words to Jackson, but his eyes darted nervously to look at his friend.  Then Aaron backed up, eyes still looking at Jackson.  And as he started to walk away, he looked back one more time, still with scared eyes focusing on Jacks.

It was incredibly sweet and sad and broke down all my tough reserves as I cried all the way to the vet.

And Jackson, in what seemed like one final way of expressing his opinion of all this, pooped in the van!  Served us right…right?!

When we got home and sat down to supper, Aaron did another amazing thing.  He didn’t seem to mind at all that we had some tears, and if you know Aaron, you know how shocking that is.  Aaron hates for anyone to cry.  If I just sniff my nose, he instantly asks if I’m crying.  He thinks crying is weird…but in reality, tears make him very uncomfortable and he doesn’t know what to say or do.

Later, after supper, Aaron and I sat down to watch some television.  He was snacking on his new bag of Chex Mix.  Suddenly, he jumped up and walked to the kitchen, returning with another of his bowls.

“Here, Mom!” he said.  “I’m giving you some Chex Mix!”  He proceeded to pour me some in the bowl he had gotten and bring it to me with a big smile on his face.  And even though I didn’t really want it, I would never have said no after I saw his happy face.

You see, Aaron loves to share with people…most of the time.  But sharing his food or his movies or his treasures…whatever he has…is Aaron’s love language.

And it was like he wanted to share a snack with me because I was sad.  Kind of like he shared all those jerky treats with Jackson earlier, except I merited a bowl.  Then he kept bringing me the bagel chips and the “twirly crackers,” as he calls them, that he doesn’t like…dumping them in my bowl with all the excitement he would have if he was giving me something of huge importance.

But this was of huge importance because it showed me that he cared that I was sad.  Empathy doesn’t always come easily to Aaron, but on this night it did.  So I ate the crackers that I didn’t really want so much, more for him than for me.  Yet it WAS for me, too, because it was like a good medicine for my heart in so many ways.

Aaron, last night, agreed with our sadness and he showed it in the way that Aaron does…not with words or deep conversation…but with his actions.  He tolerated our tears, and he shared what was important to him at the moment.  I never tasted any better Chex Mix than what I ate last night!

This morning, after Aaron ate his huge pile of scrambled eggs that I made him for breakfast, he put his plate on the kitchen counter.  Little pieces of egg were on the plate…little pieces that ordinarily would have gone in Jackson’s food bowl for him to eat, much to Aaron’s great delight.

“I was almost going to go out and put those in Jackson’s bowl,” I said to Aaron.  “It’s hard to think that Jackson isn’t here.”

“Yeah,” Aaron replied.  “No more dog!”

And he walked off with that, making his chuckling noise that isn’t a laugh.  It’s like he’s satisfied with what he’s said…not necessarily happy but satisfied.

That’s the bottom line if I ever heard a bottom line.  Just get to the point with Aaron.  Say it like it is.  Put things into facts, place them in a category, and move on.

But I know he thinks deeply and he feels deeply.

That goodbye wave and my Chex Mix will remind me of that for a long, long time.

20130115_141300

 

 

 

Special Aaron

 

No mother can ever forget the birth of their babies, each one so unique and completely amazing.  That first baby, though, holds a very tender place in a mother’s heart.  Our first baby was Aaron.  He wasn’t loved more than our other two children, but that first birthing experience was one of a mixture of fear and uncertainty that culminated in total wonder at the little squalling miracle lying in my arms.

A son!!  I remember a feeling washing over me that I had never experienced before.  Total love.  I knew that certainly no other woman could have ever felt as blessed and…well…as special as I did in those new moments of motherhood.  I know now that this wasn’t true, but you could never have convinced me otherwise during those first fresh days of holding my little son.

I examined him from the top of his fuzzy head to the very bottom of his wrinkled toes.  Every detail was so perfect.  He was so tiny and complete…wispy eyelashes, button nose, tee tiny little fingernails and toenails…just every single part was truly a work of art from God.

8eb0b-aaron1dayold

Lots of years have passed since my first introduction to motherhood in that old wooden WWII hospital at Fort Carson, Colorado.  So many details of Aaron’s future, unknown to us back in 1984, have woven themselves into our own future now.  Never, ever did we dream that our Aaron would continue to be defined as “special,” but now in the sense that we often call “Special Needs.”

Sometimes I still shake my head in disbelief at that title.

Yet there is no denying the reality of this path upon which God set our steps.  Aaron’s first seizure in Germany at the age of seven led us to a diagnosis of Epilepsy.  Seizures have never been out of the picture since that time other than for brief periods of reprieve.

Then later, at the age of 14, came the surprising diagnosis of autism…Asperger’s Syndrome.  This wasn’t a common condition at that time.  I didn’t even know what Asperger’s was.  But we’ve all learned along with Aaron just what it means to live with what we call “Special Needs.”

It’s very interesting to look up this word “special.”  It’s a word that we so routinely use that we don’t give it much thought.  So, I did just that…I looked up this special word in the dictionary…and I was touched by just what it means to be special.  Especially what it means to Aaron, and so to us as well.

 

SPECIAL:  Distinguished by some unusual quality.

Our family would laugh at this one, not because we’re cruel but because Aaron has LOTS of unusual qualities.  Many days I wish it was only one.  Some are funny; some are annoying; some he repeats over and over; some are loud; some are very embarrassing….

 

SPECIAL:  Readily distinguishable from others of the same category.

Well, that’s one way to put it.  He’s very readily distinguishable when he stops in the crosswalk at Wal-Mart and holds his arms up just to be sure that traffic knows to stop!  He’s totally distinguishable when I remind him to look UP as we leave the store and enter said crosswalk again so that he looks for traffic and not at his feet…and he stops in the middle of the crosswalk and looks up at the SKY!!

He’s also very likely to hover at the door of the nail salon like a stalker, watching the women getting their manis and pedis…fascinated by the smells and the sounds…but a little alarming as he curiously stares.

He whistles…he claps…he sings.  Or he stands in the little restaurant in the Wal-Mart entrance and delights in the fact that the attendant thinks he wants to order.

 

SPECIAL:  Being other than the usual.

Usual is so boring to Aaron.  Some days I wish for boring.  But Aaron does add a spark to life on most days.  Sometimes a raging fire, honestly.  Like Gary and I envisioned Friday evening in Cracker Barrel when Aaron decided to take the globe off the oil lamp…that was lit…with real fire.  All was well.  Nothing to see here, people at the table beside us.  Move on.

 

But there is also one more meaning to this word…this special word.  And this meaning is by far my very favorite.

 

SPECIAL:  Designed for a particular purpose.

You see, Aaron was indeed designed by God, just as much as all the other babies ever conceived.  He was designed for a particular purpose.  I don’t always live in that reality, especially on the hard days.  But I know deep in my heart that God made no mistakes with Aaron.  God’s sovereign hand made Aaron just the way he is.  It’s up to me to live in that knowledge, especially when I’m tired or upset or discouraged or embarrassed.

Honestly, one of the huge purposes that I’ve seen Aaron have in my life is to remind me of how much I need God.  How much I need His love and forgiveness and patience and strength.  How when I am weak, then God is strong FOR me and IN me.

 

Aaron reminds me to give:

IMG_0075

 

Aaron reminds me to love:

IMG_0111

 

Aaron reminds me to laugh:

IMG954226

 

WP_20170511_08_16_08_Pro

 

Aaron reminds me to enjoy life:

IMG_0254

 

WP_20180504_14_40_52_Pro

 

WP_20180823_15_54_06_Pro

 

Aaron reminds me to keep going when things are tough:

IMG_0248

 

WP_20170510_14_31_37_Pro

 

And God reminds me of these truths:

 

For You formed my inward parts; You wove me in my mother’s womb.

I will give thanks to You, for I am fearfully and wonderfully made.

Wonderful are Your works, and my soul knows it very well.

My frame was not hidden from You, when I was made in secret;

And skillfully wrought in the depths of the earth;

Your eyes have seen my unformed substance;

And in Your book were all written the days that were ordained for me,

When as yet there was not one of them.    (Psalm 139:13-16)

 

Aaron-mothers day 12May1985

WP_20180513_11_22_57_Pro (2)

My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening.  I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures.  I would rather have heard a seizure, honestly. 

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels.  I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook.  I love sharing the very unique and humorous ways that Aaron speaks.  His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word. 

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00.  He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set.  But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer.  When Aaron plays a game like this, he has a very hard time stopping it and saving it.  He must reach a certain point in the game, and in his mind, before he will turn it off.  For over an hour he kept repeating the same phrase, loudly: “I’m coming!!”  Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time.  We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out. 

“Can we watch Bones, Mom?!!  Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that.  He was in such a tizzy.  And he could tell that I was tired and didn’t want to stay up late.  His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility. 

Mom was mean.  Mom was dumb.  Mom didn’t care.  On and on.

He turned his DVD on.  Turned it off.  More yelling.  Turned it on.  Turned it off.  Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry.  I wasn’t crying, but he didn’t believe me, so he stared and stared at me.  And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much.  He looked so funny, really, that in my tiredness I did the forbidden…I laughed.  Aaron thought I was laughing AT him personally.  He erupted and we traveled even further downhill than we already were.

It was a wild hour after that.  He was in and out of his bedroom…in and out of bed…in and out of our bedroom.  He was calmer talking to Gary…angry talking to me.   Say goodnight, Mom…no, don’t say goodnight, Mom.  I don’t want your goodnight kiss…OK, I do want your kiss. 

He calmed when Gary came upstairs.  He let me hug and kiss him goodnight.  And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated. 

My calmness during the whole episode only seemed to fuel his flames.  The realistic, upset words I did say seemed to appeal to him more than soft kindness.  So strange how that works.  So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors.  Seizures are scary and sad.  Behaviors are exhausting and often hurtful.  People feel sorry for seizures.  But behaviors…what do you do with behaviors? 

And behaviors leave me feeling like a very unfit special needs mother.  I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me.  Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort.  But my tension was strong, too, and sleep wouldn’t come.  My tossing and turning was keeping Gary awake, too, I knew.  I would relax and then thoughts would wash over me.  I would relax again and Aaron would stir, seeming to be restless as well. 

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately.  How could I have handled it differently?  What should I have said?  What should I have NOT said?  Guilt for not liking Aaron when he’s out of control.  On and on.

What I do know is that God is always there for me.  He heard me last night, there in the dark, praying and confessing and praising.  He knows my form.  He knows that I am human and that I am weak and that I need Him, totally.  He knows that I get frustrated and tired, and that I do love Aaron with all my heart.  And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy.  Some days…and happenings…make it harder than others. 

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace. 

That’s the kind of parent I need to be with Aaron.  Forgiving him…understanding but not condoning…and opening my heart and my arms with love. 

I have no superior wisdom or strength.  I mess up…I give up…I look up.  And there I find God, always understanding and giving me grace. 

God’s a good Father to me, his special needs daughter.  I need all He gives to me and does for me, for I have nothing of my own.  He certainly didn’t choose me for this parenting role because of anything I have to bring to the table.  He chose me because…well, I don’t really know.  But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest.  Which is often.

God loves me, His special needs daughter. 

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care. 

img_0073