Mom, Don’t Be Sad

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

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

Aaron’s mess often makes me a mess.

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

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

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

What a relief to me to see him happy!

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

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

Aaron came to the van looking like this:

 

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

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

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

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

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

 

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

 

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

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

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

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We saw lots of very old, dramatic trees.

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Aaron even happily posed for a picture.

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

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What a very fun, relaxing afternoon!

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

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

I just wish I knew why.

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

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

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

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

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

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

“Mom!” he said.  “Don’t be sad!”

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

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

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

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

“Mom, don’t be sad.”

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

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

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

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

Gary was right beside me last night, as always.

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

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

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

“Mom, don’t be sad.”

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

 

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Smooth Gliding

Aaron had a seizure shortly after 4:00 this morning, so I kept him home from his day group today.  One seizure not only makes him feel bad when he gets up and about, but one seizure can also mean more seizures to come…especially drop seizures that are so dangerous.

As I went sleepily up the hall this morning to be with him, I was mentally trying to remember what my day held that would need to be changed.  Fortunately, today was just errand day for me…nothing critical that had to be rearranged, like a doctor appointment for me or for Aaron.

Still, the point is driven home yet again that I am always on call when it comes to living with Aaron.  Any caregiver knows what I mean.  It’s very difficult if not impossible to commit myself to activities that would demand my presence, like a job or even some volunteer positions.  And that’s OK for me, thankfully.  God has blessed me with the privilege of being able to stay at home with Aaron.

Sometimes that blessing, though, can turn into a struggle for me.  Aaron isn’t always easy to care for.  Oh, I can handle seizures and wet bedding and interrupted schedules and doctor appointments and all the rest that goes along with life…life with Aaron.

It’s his behaviors, at times, that wear me and Gary down.  Aaron’s ups and downs due to his autism can be exhausting and so very frustrating.  Then when I erupt, along comes the guilt and the “I’m so done!” attitude.  My own ups and downs are personally exhausting to me on so many levels.

So today, in an odd kind of sad way, has been a reprieve for both me and Aaron.  He is far happier when he has no place to go…no schedule to keep…no expectations.  And happy Aaron equals happy Mom – though my heart is always sad to see his seizures and the toll they take.

One toll is that Aaron often loses his taste, as he says, after seizures…and today was no different.  Nothing interested him for lunch until I mentioned cream of chicken soup.  He slurped happily while watching a bit of the old Incredible Hulk television series, leaning back occasionally to hold his head.

 

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Later, I sat down beside him and asked this magic question:

“Aaron, would you like to go get a milkshake?”

How Aaron loves milkshakes!

“Yeah!!” he answered as his eyes lit up.  “And can it be a hot fudge?”

I agreed to hot fudge, and Aaron was happy and very ready to go.

When I later told him it was time to leave, he came to my closed bathroom door with his report.

“Mom,” he said.  “I have on my shoes and my glasses and my watch.”

Bless his heart.  Preparation details for these excursions are very important, even if Sonic is only one mile down the road.

When we got home, Aaron sat on our porch glider with his yummy hot fudge milkshake while I watered the porch plants and swept away some unwanted spider webs.  Then I settled in beside him.

 

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It’s a beautiful day today, and our time on the front porch and out in the yard later was so sweet.  We examined the veins of the flower petals he pulled off my orange geranium.  We talked about the dragonfly that landed near us…about the squawking blue jay we heard…about mosquitoes that drink our blood…about the squirrels that steal all our pecans…about the bag worms that haven’t built any web nests this year…about the bush that needs pruning yet again…and about the molted remains of Cicadas he found.

We examined mushrooms in the back yard…small, medium, and large.

 

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And watched honeybees in the Rose of Sharon blooms, laughing at their legs all fuzzy with pollen as they flew around from bloom to bloom.

We also rocked in our front porch glider.  Well, we attempted to rock.  That’s because rocking with Aaron in the glider is either smooth and fun or is more often a lesson in frustration.

You see, Aaron has a hard time keeping a joint motion going as we try to rock.  I go forward and Aaron is going backward.  Or he keeps his feet locked on the ground, stopping the motion altogether.  When he does master the idea of rocking simultaneously, he goes too fast and furious.

Smooth gliding with Aaron for any length of time is nearly impossible because he doesn’t cooperate.  He’s not trying to be difficult.  He just doesn’t have the motor skills to master the art of joint gliding, so we end up with an awkward mess most of the time.  It takes time and patience on my part to hang in there with him and make it work, at least part of the time.  It’s often best to just stop for a few seconds, and then try again.

In my walk with God, I’m often like Aaron on the glider.  I don’t want to be.  I don’t mean to be.  But oh, sometimes I am so out of sync with God and with who and what I know Him to be.  This is true especially in relation to our life with Aaron.

Over the years, God has worked and worked on me to show me that His ways are best, always.  Not easy, but best.  This path upon which God has set me is of His choosing.

But you know, I get tired.  I find myself saying more and more that I’m done…just done.  Yet that’s when God, if I get still and listen…like when I read His Word to me and I pray it back to Him…says to me that He understands.  He knows tired and He knows being done.

What I need to know is that He is God.  I just need to be still…to quit striving…and to know that He is God (Psalm 46:10).  Sometimes God just needs us to stop the rocking, rest a spell, and then pick it up again.

And I need to let Him do the leading.  It’s a mess when I take over.

I do that by trusting Him, obeying Him, confessing my failures, and looking at Aaron as a gift of God in our lives.

God doesn’t expect perfection from me, but He does expect cooperation if I want to live in peace and joy.  Peace doesn’t come by my surroundings being what I want them to be.  Peace comes to me despite my surroundings so often being an awkward and frustrating mess.

“Just be still now,” God says.  “Quit trying to be the lead as we’re on this glider of life.  I’m right here beside you.  Let Me lead and you follow.”

“Lead me in Your truth and teach me, For You are the God of my salvation; for You I wait all the day.”  (Psalm 25:5)

 

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What Number?

Aaron loves storms.

LOVES storms!

And we got a doozy of a storm Wednesday evening.  We followed it on radar as it approached.  We saw the clouds swirling and thickening from my favorite upstairs vantage point.

 

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Aaron was happy.

Happy until our power went out.  What’s strange is that our power vanished before the storm really hit our area.  We were surprised.

Aaron was puzzled.

He was also a little irritated that he could no longer be on his computer.  A loss of electricity is not his favorite part of a storm.

We were outside looking at the clouds when Aaron spied our neighbors outside on their driveway, and despite my admonishments he was over there in a flash.

“Hey, Colby!” Aaron yelled.  “Is your power out?”

And off Aaron tromped through our yards, his ever-present sweater flapping in the wind, to stand on Colby’s driveway…eventually joined by me and Gary, and Colby and Amanda, and Derek and Gina, and all their children…and Aaron.

Our neighborhood storm gathering didn’t last long, but Aaron took full advantage of the short time to become even more excited, more animated, and definitely louder.

Sorry about the sweater on your head, Gina.

It was probably best that rain started falling so we could all escape inside to our own homes, where for us…and for Aaron…the reality of no electricity began to settle in.  No lights…no television…no computer.

Aaron was unsettled.

He was full of questions and wandered around the family room and kitchen, asking said questions and wondering what to do with himself.

His main question?

“When will the power come back on?!”

We had no answer, until finally Gary got an email from our power company with the answer.

The APPROXIMATE answer of 9:15 for restored power.

Too bad Gary told us the time, out loud for all to hear.

Aaron doesn’t do approximate.

Times for Aaron are pretty much precise or nothing.

I should just say precise.  Pretty much precise does not go together in Aaron’s world.

Aaron and I have been watching the TV series, Bones, at night.  We watch one show every night.   Aaron, now busy playing his Nintendo DS in the family room that was lit with lanterns, latched on to 9:15 as being the firm time that our power would be restored.

“So Mom, can we watch Bones at 9:15?” he asked.  I explained that we weren’t totally sure that the power would be on at 9:15.

A short pause ensued.

“Mom, do you think we can watch Bones at 9:15?” he ventured again.

That’s when I started praying that the Lord in His mercy would allow our electricity to be on by…if not by some miracle BEFORE…9:15.

At 8:58, Aaron announced that he was going to bed at 9:00.  He loves watching lightning out of his upstairs bedroom windows, leaving his blinds up so he can enjoy his perfect view of the western sky.  Aaron sat in his family room chair until it was 9:00, on the dot, and just as he promised he got himself ready for bed by the light of our lanterns.  I was thankful for the storm’s distraction from his certainty that the lights would be on at 9:15.

At 9:11, just as I walked back into the family room after saying goodnight to Aaron, the lights came back on!  Aaron jumped out of bed, of course!  And at, or very close to 9:15, Aaron and I were settling in to watch Bones.  Thank you, Lord!

The next night we had a chance of storms, but none were on the radar when Aaron went to bed.  Just as I told him goodnight and was closing his bedroom door, he asked…as he always asks…if it was going to rain.  I told him it might rain but that we’re never sure.

The words “might” and “never sure” are never satisfactory to Aaron.

“Mom??” he asked through the baby monitor on my nightstand as soon as I was in our bedroom.

I pressed the Talk button.

“What, Aaron?”

“So it might rain?”

“Yes, it might rain.”

“Might?” he repeated.

Sigh.  That was me.

“Yes, Aaron, might.”

“So what number?” he asked.

I quit pressing on the talk button so I could laugh.

“40%,” I responded.

“What does that mean?” he asked.

“It means there’s a 4 in 10 chance it might rain,” I answered.

I knew he wouldn’t get that, but I did it anyway.

“So they’re not sure,” he said.

“Right, they’re not sure.”

“They don’t know,” he continued.

“Aaron, it MIGHT rain.  They’re not SURE it’s going to rain.  No one KNOWS if it’s going to rain.  But MAYBE it will rain.  Good night.  I love you.”

Talk button off.

But Aaron’s talk button wasn’t off as I heard him muttering about the chance of rain as I escaped to the bathroom.

The next night, last night, saw us with that chance of rain once again.  Aaron had already queried us over and over during the evening about the possibility of rain.  As soon as our Bones episode was over, he looked over at me.

“Is the rain 4 to 10 tonight?”

I just didn’t even care at that point about precision and accuracy, about percentages and correct explanations.

“Aaron, I think it’s 5 to 10 tonight.”

“What does that mean?”

AHHHHHHHH!!!!!

That was me…internally.

“It means there’s a half-and-half chance it could rain.”

“So there’s half a chance it could rain,” he repeated.

He was satisfied with that, repeating it several times as we got his bed all ready and made sure his blinds were open in case that 5 to 10 worked out the way he hoped.

But I can tell you one thing.  There is absolutely a 100% chance that we will again be discussing our rain chances all weekend long…over and over and over and over and over.

There is also a 100% chance that we will have our typical highs and lows…and I’m not talking about the weather now.

Oh, and a 100% chance that we’ll see this image of Aaron walking through our yard at some point with his favorite sweater blowing in the wind…slipper socks on…oblivious to the image he leaves for all to see.

 

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Free as a bird…outside…where it might rain.

3 to 10 today.

8 to 10 tonight.

I’m ready with answers today!!

 

 

 

 

 

 

 

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.

 

 

A Girlfriend

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

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

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

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

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

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

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

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

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Aaron didn’t want to look at old architecture.

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Aaron didn’t want to have his picture taken.

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

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

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

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

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

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

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

Oh dear!  Busted!!

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

“What was it like?” he continued.

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

“I want to be special,” he said.

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

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

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

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

And we feel mean to tell him these things.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Jam in the Road!

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

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

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

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

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

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

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

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

“I just like MY house!”

“I want to sleep in MY bed!”

“I want Casady to watch over me!”

“I want to eat out when you’re gone!”

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

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

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

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

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

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

So, I put the phone on speaker.

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

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

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

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

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

There!  We were all set!

Or so we thought…and hoped.  Silly parents!

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

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

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

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

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

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

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

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

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

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

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

Maybe we made the hard sell after all?!

We headed back down the highway again.

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

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

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

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

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

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

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

Oh, if only!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Is that a JAM in the road?!”

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

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

“Oh, he’s just autistic!”

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

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

UGH!!!!!

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

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

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

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

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

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

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

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

 

 

The Colliding of Obsessions

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s an idea worth falling into!