Category: Special Needs Adults

Aaron’s Funny Comments

Aaron’s Funny Comments

In keeping with the name of this blog……He Said WHAT?……I decided to just share some of Aaron’s funny comments.  I keep notes on my phone, in a notebook, on slips of paper – just wherever I can quickly jot down what he says.  I can’t remember for long the unique way that he has of expressing himself, so I do lots of grabbing and writing.  Maybe this will give you a reason to smile today.  Here goes!

 

Chick Flick:  “Annie is a girl movie.  Not a boy movie kind of way.”

 

About his thinning hair, as he explained that he’s not totally bald:  “I don’t mean being bald in one spot.  I mean being bald on different parts of my head.” 

 

After hitting his knee on the wall:  “I think I knocked my muscle!”

 

Aliens:  “That alien had a mad eye.”

 

Accents:  “What kind of accent are they from?  British?”

 

Aaron:  “Barb listens to Zach Brown.”  Me:  “Does she like them?”  Aaron:  “I don’t know.  I didn’t get to that yet.”

 

Commercial for Olive Garden:  “I remember when I got sick at Oliver Garden.”

 

Famous name:  “Sir Francis Bacon reminds me of food.”

 

Why does he need two deodorants?  “I’m separate.  I keep one in the bathroom for after I shower, and one in my bedroom for night.”

 

Coupons:  “Do you think razor coupons are getting famous?”

 

Basketball:  “Your Wichita State is the one with the blue suit on.”

 

Sponge Bob:  “I’m not a Sponge Bob cartoon watcher.”

 

Money for mall food:  “You didn’t give me enough for $5.36.  You only gave me $5.24.”

 

Describing shrimp:  “It’s a twist thing.”

 

Eating pizza:  “There’s a piece to a sausage on the floor.  Can Jackson have it?”

 

Letting Jackson lick his milkshake cup:  “I’m just giving him the pieces that are on the wall of the milkshake.”

 

After his tooth was filled:  “The hurtness is almost gone.”

 

Describing a tea bag:  “Where’s the tea filling?”

 

I hope that some of these Aaronisms made you smile, and maybe even laugh, today.  I whittled down some of my list, but there are many more where those came from.  And as soon as Aaron zooms in the door today, I better be ready to hear some more. 

Enjoy your world today, everyone!  Pay attention to every detail, because you just might miss something if you don’t.

 

 

 

 

 

 

 

The Slow Train

Imagine that every day when you drive away from your home to run errands or to go to work, you must cross a train track.  Imagine that every single time you come to that train track, there is a train on it, traveling ever so slowly.  You must wait on that train to pass before you can cross the track and continue on your way.  Then when you drive home later, the same thing happens.  Any time you try to cross that train track, no matter the time of day or how many times you have to drive over that track in a day, the same thing happens.  Over and over again, you must stop and wait on that train to slowly pass.  You begin to dread it and you find yourself very irritated about this slow moving train.  Some days you handle it better than others, but eventually on a bad day, you find yourself saying, “I hate that train!!” 

 
This is how I sometimes feel about autism.  Not Aaron, mind you…..but autism itself.  I love Aaron so much.  I love how unique he is…..how he views the world while opening up his view to me……all the many, many lessons he has taught me over the years as I have lived with him….all the times that he has made me laugh at the funny things he says. 

But some days it’s like running into that slow train every day.  On those days, if I’m tired or troubled, it can be especially difficult to remain upbeat or to see the fun in Aaron’s way of living in his world.  That’s because his way of living in his world usually involves me to some degree, and often that involvement causes me to stop what I’m doing and do what he wants…..or demands.  Just like that slow train that impedes my day, at times Aaron’s rigid routine makes me stop what I am doing while I meet his needs.

For instance, his bedtime routine at night.  At night, when I am more tired.  He absolutely does not want to go to his room to get things situated unless I go with him.  He wants me to help get his blanket on the bed just right, close his blinds, set his clothes out for the next day, and say goodnight in his room near his door…..not out in the hall or on the right side of his bed, but in his room near his door on the left side of the bed. 

If I am on the computer he will come to stand behind me and he will hover.  He is waiting for me to come up to his room for the bedtime ritual.  If I tell him to go on and brush his teeth and take his pills, he will do that and then return to stand behind me and hover some more.  I just know that he will not go to bed unless I stop what I am doing and go with him.  There’s that slow train, every day the same.

Or getting his coffee in the mornings.  When Aaron comes down to the kitchen, he wants his coffee.  I don’t mind that at all, unless he’s demanding.  But he will linger as he waits for the coffee to finish perking, if I’m making fresh, and he will linger as he waits for me to pour the coffee.  And he really wants me to carry it upstairs right away.  The other morning he was hovering, wanting me to pour his coffee.  I poured his cups of coffee and went back to what I was doing.  I always carry his coffee up to his room because he is so shaky that he spills it.  So he stood there, hovering, waiting for me to carry his coffee upstairs. 

“Are you carrying my coffee to my room?” he asked.  I told him that I would get it in a minute.  He walked in the living room, but soon was back in the kitchen…..hovering again. 

“Are you getting my coffee?” he asked again.  So I told him to go on upstairs and take his shower, and I would bring his coffee up while he showered.  This didn’t suit him at all. 

“Mom!” he said with impatience.  “Aren’t you getting my coffee?”  He started walking away, but I knew we weren’t done….and I knew I would need to carry his coffee upstairs now.

This made me very irritated on this particular morning.  I rinsed my soapy hands off under the running water at the sink.  And thinking he couldn’t hear me, I muttered, “I hate autism!”

But Aaron did hear me.  He heard my careless remark, and he did not like it…..not one bit.  Since that morning I have had to do some damage control.  I’ve explained to Aaron several times what I meant when I said those words, assuring him that I did not mean that I hate him.  I reminded him that Granddaddy died of cancer, and that I hate cancer.  I told him that Grandmother has Alzheimer’s and that I hate Alzheimer’s.  I’ve explained that I hate his seizures.

Explaining to him why I sometimes hate his autism has been a little trickier.  I’ve talked to Aaron about how sometimes life for him is very stressful because of his autism and how it makes some situations difficult for him to handle.  Aaron really doesn’t want to go into great detail about those things, though.  And I don’t either, because I don’t want him to feel that I think his life is bad or hard.  I wish I could take back that moment, and that I hadn’t said those words in my frustration.  Yet on the other hand, at least it’s opened up some conversation between us and enabled me to talk openly to him in a way I don’t normally do. 

Aaron and I were watching a movie on Saturday night, one that he had looked forward to watching with me.  Suddenly he turned to me and said that he was having a dream, and then went into a big seizure.  Gary and I stayed with him, and when he was able we went upstairs to his room so he could go to bed.  The movie would wait until another night.  I got his bed covers all ready while he brushed his teeth.  His head was hurting from the seizure, and he was slow and weak.

Despite how he felt, though, he went about his bedtime routine as he normally does.  I watched him carefully place his stuffed snake and skunk in the bed, under the covers, just right…..and then pull the covers up just to a certain point.  I watched him open his notebook and record the time he was going to bed, so meticulously.  I watched him make sure that his back scratcher and other items were on his desk where they belong….that his clock light was dimmed…..that his glasses were just where he always leaves them beside his watch that he was sure to remove from his arm. 

His routines are his life.  Even when he feels terrible after a big seizure, he still maintains his definition of normalcy and routine.  I do admire him for that.  He’s so determined despite how his body works against him.  So strong even though he’s weak at times like this. 

Yes, I do hate autism and how it has altered Aaron’s life in huge ways.  It has also altered my life in huge ways.  But I do need to be careful not to let my anger at autism be a cause for hurting Aaron’s heart.  I think he understands my statement from the other morning.  I still wish I hadn’t said it.  Lesson learned, I hope. 

That train will be on that track every single day.  I can’t change its path or its inconvenience in my life.  But I can change my attitude, and when I feel like muttering useless words I need to pray instead……count to 10 or to 100……go sit in the flower bed with Aaron for some mulch therapy……clap a few times like Aaron does to relieve my tension…..whistle or whoop out loud with Aaron…..

Poor Gary.  I don’t know if he could handle two of us in the house.

 

Because He Lives

While enjoying a dynamic Easter service this morning, I was struck with the words from the familiar song, Because He Lives.  This old song by Bill and Gloria Gaither, written in 1970, can be sung by memory for most of us.  As I joined the congregation in singing the words to the second verse, my mind thought of Aaron.  It struck me forcefully and yet sweetly how much these words give me comfort concerning Aaron, in a way I hadn’t really contemplated this deeply before.  The reality of what a living Savior means to us as we deal with Aaron’s future and the seriousness of his seizures washed over me with great peace and hope. 

 

How sweet to hold a newborn baby,

Aaron, soon after birth
 

And feel the pride and joy he gives;

Aaron
 

But greater still, the calm assurance,

Aaron – Video EEG
 

This child can face uncertain days because He lives.

Seizure day
 

Because He lives, I can face tomorrow;

 

Because He lives, all fear is gone;

Seizure day
 

Because I know He holds the future.

Newborn Aaron
 

And life is worth the living just because He lives!  (Bill and Gloria Gaither)

 

No matter what each of us is facing, we can face it with the calm assurance that Jesus lives, and in Him we will have all we need to face whatever the future holds

Shaky, But Not Shaken

Yesterday Aaron rushed in the house when he came home from his day group.  He had a huge smile on his face, but he had something else, too.  He was wearing bright yellow shades, as he calls them, and he was quite happy with his new look.  His huge smile was as bright as those sunglasses that Bryan had bought him that afternoon.  He let me take a picture to send to Andrea, Andrew, and Megan, and he was happy with their responses. 
 

Now today we’ve gone from that happy scene, to this:

 
Most of you know what this picture means.  Seizures.  How quickly things can change.  Poor guy!  Such awful seizures…….and all the awful side effects and results that go along with them are what he’s facing today.  Gary knew before bed last night that it would be a seizure night for Aaron, but I wasn’t so sure.  Well, he was right so here we are again as I listen to Aaron breathing deeply while he sleeps on the couch, his fourth seizure over as I hope there are no more.

It’s a beautiful spring morning here.  I’ve opened some windows, enjoying both the gentle breezes and the sweet sounds of birds outside.  In our front yard, just off the front porch, we have a large Golden Rain tree.  I noticed the other day, after some stout winds, that we had some small twigs scattered around the yard under the tree.  Nature had once again done her pruning work on our tree.  At other times, during strong storms, we have had very large branches scattered over our yard.  I was thankful that this wind only brought down small twigs that I will rake and throw away. 
 



















Yesterday morning, as I finished reading Psalm 21, I was struck with verse 7.  David wrote, “For the king trusts in the Lord, and through the lovingkindness of the Most High he will not be shaken.”  Pondering that verse, my mind went to our Golden Rain tree.  That tree has been shaky, many times, as it’s buffeted in the Kansas winds.  Yet while it’s been shaky over and over again, it is not shaken.  That tree still stands tall and strong, minus some branches and many twigs, but not destroyed. 
 

Shaky sometimes, but not shaken.

I find myself there in life, over and over again just like our tree.  I’m especially thinking of that fact today as Aaron lays nearby, recovering from his latest seizures.  Things sure do get shaky sometimes in life.  I’m tossed around by the winds that come my way…..that come to all of us at one time or another…..or multiple times.  I know that God can use those winds to prune me, to take out of my life attitudes that I don’t need, and to shape me to love Him and serve Him more.  God’s pruning occurs best in the shaky times.

However, I’m not shaken.  That’s because I, like King David, have trusted the Lord.  I realize that through God’s lovingkindness……there’s that word “hesed” again……I will not be shaken.  God’s love is a covenant love, never ending and never wavering toward me, His child.  The Hebrew word for “shaken” here means to go off course or to waver.  That’s what I never need to do because I am wrapped in the unconditional love of God.  I know that He does what is best, always, even when I don’t understand it. 

I may look at life through tears.  I may look around me and see the tossed about twigs that come from going through the shaky times.  But I also know that because of God’s faithful, enduring love…..because He is sovereign and never makes mistakes……that I can still be found standing strong, unshaken.  Just like our tall, beautiful Golden Rain tree. 

Shaky, but unshaken as I watch Aaron sleep this morning.  I know that Aaron is in God’s loving hands as well.

Tomorrow?  Tomorrow will be a day for wearing bright yellow shades again. 

 

 

I Know What Colby Jack Is!

I thought I would share some highlights (or not!) of Aaron’s week.  It’s been full of ups and downs, as usual.  Our life with Aaron is always a yo-yo type existence.  We may be laughing one minute, and not long afterward we may want to cry.  That’s where I’ve been this week.  Thursday was my day of tears…..tears of frustration and worry for Aaron as he bears the repercussions of his behaviors.  Aaron had a rough time at his day group on Wednesday, so he wanted to stay home on Thursday.  I let him, all the while wondering if I was right in doing so.  I wish I could say I have all the answers, but Aaron constantly shows me that I do not. 

I’ve been with Aaron, even recently, when he walks into Paradigm, his day group.  As soon as he walks in the door, he puffs up and usually launches out toward someone.  It may be to say hello and then try to say something funny while he bends over and rubs his hands together in glee….or it may be to give someone a resounding whack on their arm or back or rear…..or it may be to step on someone’s foot……or it may be to say something that he thinks is funny, but which is not funny at all.  Clients and staff have the same reaction that Gary and I have at home, either laughing or cringing or having to correct. 

After his rough day on Wednesday, and his stay-at-home day on Thursday, I was wondering how Friday was going.  When he burst in our door at the end of his day, he was happy and smiling.  We talked awhile before I asked him how his day had gone.  He told me he had a good day.  He went to a movie with the group, and Stephanie and Shauna asked him to sit between them.  We talked about his popcorn….extra large, of course…..and I asked him if he had gotten a refill.

“No,” he answered.  “Because I don’t want to get fat like ______.” 

See?  There he goes, being offensive…..and he just doesn’t get it, or can’t control his words, or doesn’t care.  Who can know from one moment to the next?  I scold and correct, but he is still sure in his mind that he doesn’t want to get fat like _____, and Mom asked if he got a refill so he had to tell her why he didn’t, and I feel that my words are useless.  Sometimes his words are actually humorous because of their bluntness as he says things that others would never say, at least out loud, but we can’t let him see us laugh.  Personal insults are never humorous, though, as we tell him repeatedly. 

Anyway, he decided that it was important to tell me about a good thing that happened.  “Mom!” he exclaimed.  “I made Shauna laugh today!”

“Well, that’s good,” I answered with a hint of caution that he didn’t notice.  “How did you make Shauna laugh?” I asked with a little dread.

“By making farting noises!!” he proudly answered, bending over then while he rubbed his hands together in delight.  How does he have skin left on his hands anyway?

You see why I ask with dread.  Do I act proud that he made Shauna laugh, even though it was because he made farting noises?  Or do I frown and try to correct his continual use of farting noises for affect?  I chose to try to correct, with a smile, but he was already off and running with his next subject.

We had our first spring thunderstorm on Monday night.  Aaron loves thunderstorms and rain.  I didn’t even realize we were about to get a storm as he got ready for bed and told me goodnight.  His bed was just right.  We had gotten all the bumps out of the covers.  Well, I had, as he stood there staring at the one large bump that he wanted smoothed out before he would progress any further with his bedtime routine.  Mr. Snake and Mr. Skunk were in his bed just right, too, so I was able to hug Aaron goodnight and escape to our bedroom…..where Gary and I lock our door on most nights for our well-being and peace.

It wasn’t long before I heard the first rumble of thunder, soon followed by another rumble.   Thump, thump, thump!  That was Aaron walking with great purpose up the hall.  Knock, knock, knock on our bedroom door….after he had tried to first open it without knocking.  Thus the lock.

“Mom!!!”  Pause.

“What, Aaron?”

“Was that thunder?” he asked.

Yes it was.

Thump, thump, thump back to his room.

Soon…..thump, thump, thump back to our room.  Tried to open door.  Knock, knock, knock.

“Mom!!”  Pause.

Yes, Aaron?

“Is it going to rain?” he wanted to know.

I think so, Aaron.

Thump, thump, thump once again to his room.

But not for long.  Thump, thump, thump to our door once more.  Tried to open door.  Knock, knock, knock.

“Mom!!”  Pause.

What now, Aaron?

“Is it raining yet?” he asked.

I don’t know!!  WHY DON’T YOU LAY DOWN AND LISTEN??

Thump, thump, thump down the hall again…..for the last time, thankfully.  He did lay down in his bed and listen to the storm, and to the little bit of rain that we got.  It’s a process for Aaron, though. 

This morning Aaron was eating some of his Colby Jack cheese cubes, which he loves.  It wasn’t long before his hand reached over my shoulder as I sat at my computer.  In his fingers he held a solitary cheese cube….for me.  When he offers me food like that, held in his fingers that have been who-knows-where, my brain is yelling, “NO, NO!!  Don’t take it and definitely don’t eat it!!”

But my heart says, “Oh now, come on.  It means a lot to Aaron for you to take it, and even more for you to actually EAT it.” 

You see, I’ve often tried to delay the eating of such offered treats, but Aaron follows me and watches me until the morsel is in my mouth, chewed, and down the tubes.  No fooling Aaron on that one.  My immune system is awesome, probably due to all the germs I ingest with each Aaron food gift.  I thanked him for the cheese cube as I held it with suspicion, hopefully suspicion that was hidden from him. 

“See?” he said as I watched him put a cheese cube to his mouth.  “There are two ways to eat it!” 

He then demonstrated how you can bite the small cheese cube in two.  “You can bite the half off!!” he declared with delight. 

I laughed as he laughed.  Only Aaron would take a boring cheese cube and make it funny.  He never did show me the second way to eat a cheese cube because he followed me while I went upstairs, still holding my cheese cube, as he watched like a hawk to see when I would eat it…..either whole or by biting the half off.

“I know what Colby Jack is,” he told me.  “It’s cheddar and swiss!!” 

So then I was laughing at my silly little cheese cube as we discussed its true make-up, and I promised Aaron that I would eat it….which I did.  No side effects yet.

Little things become so huge to Aaron.  A storm….a cheese cube. Through his observations I find myself drawn into the complexities of even the most mundane things.  And yet Aaron so often cannot see the complexities of things that truly affect his life…..things like his comments and his behaviors that can be so annoying and insulting.  He would much rather talk about a storm or a cheese cube than talk about his hurtful words or his hitting.  This is the hidden element of his disability that so impacts his life, but he doesn’t get it.  It’s very hard to always remember this about Aaron, and to react with understanding and instruction. 

 
That little cheese cube reminds me so much of Aaron.  He thinks it’s Cheddar and Swiss, and we’re reminding him that it’s Colby and Monterey Jack.  He thinks it’s all right to do this or say that, and many of us are reminding him that it is not all right to do those things.  Life is not meant to be lived the way that Aaron often perceives it, so we keep hammering away and hoping that someday…..or at least on most occasions…..Aaron will remember what should truly comprise his interactions with others. 

It’s not farting noises, either, by the way.

 

 

 

 

 

Every Piece of Aaron

Aaron came home this past Friday full of talk about his day.  He had helped Bryan work on houses, he said, meaning that he had gone with Bryan to one of the residential houses that Paradigm manages.  He has really enjoyed helping with the repairs on the houses…..or putting together tables and chairs…..hanging curtain rods…..those sorts of things.  I’m not sure how much actual helping Aaron does, but he likes going and he likes telling us that he’s a “worker on houses.”

As Aaron talked on Friday about his day, he reached into his pocket and pulled out three packs of Big Red chewing gum……his favorite.  I guess this was his purchase of the day at Quik Trip, or somewhere, and he was very happy with it.  I knew what we were in store for over the upcoming weekend, too.  Loud chewing of several pieces of Big Red gum in Aaron’s mouth at once, and the smacking of his lips as he savored every taste of cinnamon, is what awaited us.  It doesn’t matter how many times I say, “Aaron, chew with your mouth closed.”  Or, “Aaron, don’t smack your lips like that when you chew.  Or, “Aaron!  You’re chewing like a horse!”  He’ll quieten down for a few minutes, but soon he’s back at it full force while I cringe.

I had supper going on Friday when Aaron once again walked into the kitchen, this time with an open pack of his Big Red gum.  Several pieces were missing.  I knew where they were because I could hear them in his wide open mouth as he chewed them.  Yuck!  He handed me the open pack of gum and said, “Here, Mom.  You can have some gum.” 

Now Aaron knows that I’m not a big fan of chewing gum.  I just don’t enjoy chewing gum a lot, but I thanked him for the kind gift and told him I would chew some later, after supper.  I took the pack of gum that he held out and I placed it on the kitchen counter as I turned to do something else.  After several seconds, I heard Aaron leave the kitchen, and when I turned around, this is what I saw.

 
I had to laugh.  Aaron didn’t mean for me to take the WHOLE pack of gum.  He meant for me to have one PIECE of gum.  He must have been glad that I turned my back so that he could quietly take that one piece out, lay it where I would see it, and make his getaway.

Later that night, we were watching Jungle Book.  We laughed, and were enjoying the story and the fun songs.  I kept glancing over at Aaron, who sat in his favorite chair covered with his favorite blanket.  He seemed spellbound by the movie, not making a motion or a sound…..which is very atypical of Aaron.  We watched Mowgli with his friends….Bagheera, Baloo, Colonel Hathi with the other elephants, and even the vultures.  And I kept turning an eye on Aaron, watching him as he seemed so taken by this movie.

Finally I noticed that Aaron looked different.  I looked at him while he was still unaware of my stare, which he would not like.  Was he crying?  I watched a few more seconds, and soon Aaron took off his glasses and wiped his eyes.  Yes, Aaron was crying.

“Aaron, are you OK?” I casually asked.  He said he was, so I waited a few seconds. 

“Are you crying?” I ventured to ask. 

He paused before looking at me with a halfway smile and then surprising me by saying yes.  He was indeed crying.

I asked him why he was crying and he simply answered, “I miss Rosa.”

Then over the next few minutes, while Jungle Book continued to play on the television screen, he told me that he didn’t think he had friends…..that no one was a friend like Rosa……no one understood or liked him like Rosa…..that even some of his other friends at his day group were getting tired of him.

He tried for the remainder of the movie to talk a blue streak about anything and everything, as long as it had nothing to do with what he had just said.  He had shut the door on that topic, so we finished the movie with the spell broken.  Aaron was talking nervously about whatever came to his mind, and I knew not to bring up the friend subject again at that point.

And he put a couple pieces of Big Red gum in his mouth, chewing furiously as I kept up my usual reminders to him about his method of chewing. 

Later that night, though, and several times over the course of the weekend, Gary and I had opportunity to discuss the subject of friendships with Aaron.  Poor guy.  He has so many disconnects in his autistic brain.  He just can’t control many of his actions, for one thing…..and then he has a hard if not impossible time figuring out that A leads to B which leads to C…..

For instance, his VERY loud clapping is extremely irritating.  When he claps a lot, or sometimes even once, it can make his friends downright angry.  It’s very hard for Aaron to control that clapping.  It’s like he just must clap sometimes.  But he also told us over the weekend that his clapping makes his friends mad, which makes Aaron sad.  He doesn’t always act sad, but he often is.  He showed his sadness during the movie on Friday night.  Aaron said he doesn’t have friends like Mowgli, and he wishes he did.

We gave him little instructional talks about how to make friends.  Do this, and don’t do so much of that.  Do speak kindly, for instance……and don’t hit people on their rear ends.  It seems so simple and easy to us, but it’s so very difficult to Aaron.   

Aaron has many facets to him.   So often, those facets are hidden under his loudness or his toughness.  But every now and then, we get a glimpse into what he’s thinking and more importantly, into what he’s feeling.  It’s a rare event, bittersweet because of the sadness that sometimes accompanies that look into his heart. 

It reminds me of his pack of Big Red gum on Friday.  I thought he was offering me the whole pack that was remaining, but no, he was offering me one piece.  When I wasn’t looking, he left that one piece on the counter for me to find when I turned around.  I was happy with that one piece, given with Aaron’s open heart, as much as if he had left me the whole pack.

That’s how we must live with Aaron every day as we deal with his special needs, especially in this case his autism.  At the most unexpected times, when he is ready, he might allow us to see into his mind and into his heart.  It’s usually in one little piece at a time, though.  He walks away with all the other parts that make up Aaron, maybe to be shared on another day or in the midst of another event.  He won’t sit down for an hour and share all of his thoughts and all of his inner feelings.  He WILL sit for an hour, or for several hours if we let him, and talk about aliens and movies and all sorts of other Aaron “stuff.”  But his inner workings are doled out piece by slow piece, over time.

We must be ready to seize those times, with Aaron’s permission…..almost as if he’s handing us that one piece of gum.  Piece by piece we come to understand Aaron.  And as Gary and I put those pieces together, it’s similar to having a pack of gum that’s filling up with all of our understanding of Aaron. 
 

I wouldn’t call our pack of gum Big Red, though.  I would call it Big Aaron. 

Big LOUD Aaron, on most days.

Aaron, don’t clap.

Aaron, don’t hit.

Aaron, don’t chew with your mouth open.

Aaron, don’t say those words.

Aaron, do know that we love all of you…..every single piece of you.

 

Headed Down Pity Path

I’ve been trying to decide how to write this blog post….or if I even should write it.  Yes, I think I should.  But how to do it in a way that doesn’t make Aaron look “bad” or make me look selfish.  Yet the truth is, Aaron isn’t bad but I am sometimes selfish.  I’m human and I get tired, but I also have to acknowledge where my roots often rest…..and that’s sometimes in soil that grows some undesirable attitudes. 

Tuesday night saw Aaron having four large seizures, so I was up four times with him.  I did sleep some between the episodes, which I often am not able to do, but still I was tired that morning.  I stayed up after Aaron’s last early seizure, and later I did the usual clean-up.  I stayed close to him as he lay on the couch for the rest of the morning, waiting to see if he had another seizure.  I had the laundry going and was able to do some other things while I sat there at the kitchen table.  I was on Psalm 18 that morning in my study time, which was perfect for me.  My favorite verse is there….verse 29.  “For by You I can run upon a troop; and by my God I can leap over a wall.” 

I felt very thankful as I sat there.  God seemed to be prompting me to focus on thankfulness.  I was thankful that Aaron was for the moment seizure free, warm, and safe.  Thankful that this wasn’t the day I was to take Nora to an important doctor appointment.  Thankful that my washing machine and dryer were just steps away, convenient and functioning.  Thankful that Aaron’s seizures aren’t far worse, as so many of our friends experience with their children.  Thankful that I don’t have to work, because it would be nearly impossible for me to do so.  Thankful for coffee.  Very thankful for coffee!

Later, Aaron woke up and he struggled to get off the couch.  After a few minutes, as he sat with me at the kitchen table, he told me that his arm was hurting.  I think he sprained it during one of the seizures.  Soon I asked him if he would want to eat, and we figured out together that some Cream of Chicken soup would hit the spot.  He was worried, though, that with his right arm hurting he would not be able to lift the soup spoon to his mouth.  Therefore, I demonstrated to him how he could eat by bending close over the bowl.  Aaron sometimes doesn’t like us to use our hands to demonstrate some action.  Don’t ask me why, but sometimes it irritates him.  So when I bent over to show him how he could eat, he snapped at me.  “You don’t have to show me how to do it by going like this….” he said with irritation as he copied my movement. 

It was as if he had thrown cold water in my face.  I knew that he was feeling terrible…..I knew that he has never liked physical demonstrations like this……I knew that his autism makes him very blunt…..but I also knew at that moment that I felt very hurt.  I just looked at him, and he knew very well that I was not happy.  I didn’t say a word, but got up and fixed his soup.  I got him all settled there at the table so he could eat, and I coldly told him that I was going upstairs to take my shower. 

For some time, my thoughts were headed down Pity Path.  How could Aaron treat me so rudely after all I’ve done for him?  It was very easy to rehash all of my sacrifices for Aaron, and very easy to nurse my hurt.  I was mostly silent toward him as the afternoon wore on around us.  He seemed to be fine, watching a movie, so I slipped down to Dillon’s to run an errand I had hoped to run that morning, but couldn’t because of Aaron’s seizures…..how I had to sit with him and didn’t get to accomplish what I wanted when I wanted……how my day was interrupted and my schedule trashed…..

See how it went with my thoughts?  Where was the thankfulness I had experienced earlier?  Where was my, “…..with God I can leap over a wall?”  I’ll tell you where it was.  It was buried under my self-centered thoughts, my tired body and mind, and my feelings of being very unappreciated by my son.  I had some major adjusting to do over the next hours, and some soul searching, as well. 

We all have many moments of feeling just as I did on Tuesday afternoon.   As a parent, spouse, sibling, friend, worker on the job, volunteer at church…..no matter where we are…..we will get our feelings hurt.  And as the mother of a special needs child who also has autism, it’s easy to be hurt a lot.  Aaron doesn’t have filters or feelings like we do.  He must be reminded over and over to be kind, to think of other’s feelings, to react in a nice way instead of a blunt or harsh way, and on and on.  He is very self-centered, and this is a huge reason why it doesn’t work if I am that way, too. 

I think it was important for me, personally, at that moment to step back and remove myself from Aaron and the situation.  The danger I faced, though, was in nursing my hurt instead of focusing on what God would do.  What I allow my thoughts to focus upon will determine my attitude, and will even determine whether I sin in the situation or grow in it.  To be hurt was normal.  To let my roots sink into the hurt as I planted myself in it would not be beneficial or right. 

Christ gave up a lot for me.  How often do I react to Him with unthankfulness or pride?  He didn’t hold on to his position as God’s Son, but emptied Himself of all that and became sin for me.  That’s the best example I can follow as I experience the hurt and the tiredness of being a special needs Mom….or any of the other many roles I have in this life.  It can’t be about me, or I will be continually frustrated.  It must be about honoring Christ, and caring for Aaron.

Understanding how Aaron feels after seizures…..understanding his autistic way of viewing the world….is very necessary, as well.  So is training him and reminding him of his actions, and how they can hurt or help others. 

Understanding how I feel after Aaron’s seizures…..understanding my sometimes selfish way of viewing the world…..is also very necessary.  Both must be recognized and dealt with before being allowed to get out of hand. 

Well, back to my verse in Psalm 18.  I didn’t exactly leap over that wall with God.  He more or less had to lift and shove me over it.  I wanted to sit at the base of the wall and lick my wounds, but He wouldn’t let me.  I’m glad for that!  Glad that He is patient and persistent with me.  Glad that He shows me His love.

Just like we have to be with Aaron.  It won’t be the last time, either.  For me or Aaron, either one. 

A Day With Aaron and Rosa

I have written often in the past about Aaron and his special friend, Rosa.  Aaron called her Rosie for the longest time, and that’s what I still find myself calling her now.  They have a very sweet friendship.  Aaron has struggled with whether they are boyfriend/girlfriend, but both we and Rosa’s parents encourage friendship and nothing more.  In other words, we don’t push them toward a relationship that might open doors that we don’t want to open at this point……and probably never.  Aaron and Rosa are very happy with things the way they are.  Their happiness warms our hearts.

Rosa has had a change in her day and residential services, so now she and Aaron don’t see each other at all.  At first, they both seemed to be handling this change far better than we had feared they would.  Over the weeks, though, they have shown signs of missing each other a lot. 

“It scares me that Rosa and I aren’t friends anymore,” Aaron told me one day.  I assured him that they were indeed still friends, but to Aaron it was hard to figure that out since he didn’t see her anymore.  I felt so badly for him as I tried to explain things once again.

“Rosa left me,” he said on another day.  He said the words flatly one day, without any drama, which only seemed to increase their depth.  I knew he was missing her a lot.

“I miss Rosa,” he mentioned on another day.  “It seems I can’t be with anyone to tease anymore and to talk like we used to do.”  So I mentioned some of his other friends, but he only said, “They don’t tease like Rosa.”  And some of it isn’t that Rosa would tease Aaron so much, but that Rosa understood Aaron’s teasing.  And where sometimes Aaron’s teasing goes too far, and might involve a hearty whack on the back or the rear, he never to our knowledge went that far with Rosa.  He even admitted to us that he wouldn’t treat Rosa like he did others. 

Another issue also presented itself shortly after Rosa’s absence.  Another female client decided that it was time to take advantage of this opportunity and to see if she could talk Aaron into being her boyfriend.  This didn’t go over well with Aaron at all.  He was a combination of angry and confused as he tried to ignore her repeated offers of a relationship now that Rosa was gone. 

“______’s eyes looked like she loved me,” agitated Aaron told us one day.  Now how perceptive is that?! 

“Stephanie and Shauna don’t say they love me,” he said on another day.  “That’s good to me, Mom.”  He knew that those two friends were just that…..good friends…..and that they had no designs on Aaron’s affections other than friendship. 

Well, over time I think we’ve worked out the situation with his friend who wants to be more than a friend.  The staff at Paradigm stepped in to intervene, and I haven’t heard any more from Aaron concerning her proposals or her loving eyes. 

Louise, Rosa’s mother, called one night this past week and told me how much Rosa is missing Aaron.  We decided to meet for another movie day this past Saturday, with pizza to follow at our house.  When I told Aaron, his eyes lit up.  I asked him if he wanted to go to a movie with Rosa and then have pizza, and he answered with a resounding, “YEAH!!”  He agreed to see the new Cinderella movie, and decided not to go watch it with Paradigm on Friday since he would see it with Rosa on Saturday.

I told Aaron exactly what time on Saturday we would be leaving when he asked me that question on Friday night.  And then I repeated it several times on Saturday morning.  The EXACT time was, as always, of utmost importance to Aaron.  He was watching his Egyptian movie, Sands of Oblivion, when I told him it was time to leave for the theater. 

We walked into the theater lobby and saw Louise sitting with Rosa on a bench.  Aaron marched right over and said, “Lou-ees!”  That’s how he pronounces her name….with a French or Italian spin to it…..and it’s quite hilarious.  “Lou-ees!” he said.  “Do you know Im-La-Rah from Sands of Oblivion?!” 

I laughed, and Aaron waited for Lou-ees’s answer while Rosa sat there juggling her colored pencils that she was holding.  Louise answered his question by telling him that she didn’t know Im-La-Rah…..and she answered like this was perfectly natural.  She reacted like only someone who understands Aaron and others like Aaron would react. 

And you know what?  Aaron and Rosa didn’t say ONE word to each other.  Aaron didn’t say hello to her as we hurried into the theater, and she didn’t say hello to Aaron.  They don’t do that.  And they’re happy as can be with it.  They were together and that’s all that mattered to them.  They don’t and won’t show their happiness or exhibit their feelings like you and I would do.  Aaron sat on the edge of his seat, talking nonstop, and Rosa was also talking…..but they weren’t talking to each other.  Rosa was busy with her colored pencils, and Lou-ees was drawing pictures for Rosa the way she enjoys, and Aaron was talking a mile a minute about anything and everything while Rosa interjected her comments to me or Louise.
 

I moved over to sit next to Aaron during the movie, for damage control.  It was a good thing I did.  Cinderella wasn’t his favorite movie.  As he told me later that night, “Cinderella is a girl show.”  But he wanted to see the movie that Rosa wanted to see, and when he told me that, I was just filled with warm fuzzies.  But because it wasn’t his favorite movie, he was pretty restless, so that’s where the damage control came in.  Aaron, don’t stretch with your arms in the air…..don’t kick the seats in front of you…..don’t yawn so dramatically…..quit saying loudly, “I know this story!”…….and please don’t say “Sexy!” when they kiss!!

I won’t even dwell on our foray into Little Caesar’s to get pizza.  Let’s just say that Aaron was large and in charge, bursting in the door of the very small, crowded lobby and telling the clerk, “I want two pepperoni!!” the moment that we entered.  It was a whirlwind and we left our mark, that’s for sure, on employees and other customers alike.  Louise and I just laughed as we exited.    

Back at our house, we ate pizza on our patio and talked lots more.  Rosa asked Louise to tell us this and that, and Aaron was his usual verbal self….in a good way, thankfully.  After we ate, he brought out his bag of Skittles to share.  And he gave Rosa a brand new container of Pringles, his favorite flavor…..not a flavor he didn’t like, such as he gave to Andrea one day.  Plus he gave Rosa a piece of his very favorite Swiss Cheese for her to take home and eat later.  We took a little walk around the yard, Aaron still talking and Rosa still holding her colored pencils.

 
We waved goodbye as Rosa and Lou-ees drove away, with talk of getting together again still fresh in Aaron’s mind.  I don’t know that he and Rosa said goodbye, either, any more than they said hello.  I was focused on Aaron being quiet long enough for someone else to say a word or two.  The rest of the evening, Aaron followed me around as I worked on laundry and other chores.  He was happy and he was full of talk, of course.  He told Gary all about the day, too, several times.  Trust me.

Before she died, Cinderella’s mother told Cinderella to be kind and to have courage.  Kindness is something we don’t always see in Aaron, although he exhibits it more than ever as he’s aged.  But toward Rosa, we do see Aaron showing that kindness.  And she shows him the same.  It’s so sweet and wonderful to see them that way together.  Relaxed and happy, even though they don’t always demonstrate their closeness to each other in the way that you and I would do. 

Lou-ees and I will hopefully do this again soon.  I guess we’re the ones with the courage…..and I laugh as I say that.  We’re also the ones with joy in our hearts as we give our special adult children a special day together.  Having them is a responsibility that won’t go away at a certain age like it has with our other adult children. 

But with that responsibility comes blessing…..some days hard to find……but on other days, like Saturday, all around us for the enjoyment. 

Glittery Moments

 

My day yesterday, Sunday, began at 4:12….to be precise, like Aaron.  Aaron had a seizure for the second early Sunday in a row.  Then he had another at 5:45, so I just stayed up then, knowing that I wouldn’t be able to go back to sleep.  This is a very busy, tiring time for everyone.  To start my day off so physically tired wasn’t what I had planned, but as usual my thoughts went to Aaron and how awful he was going to feel when he woke up.

 

I heard him upstairs through the baby monitor later in the morning, stirring and stretching and then getting out of bed.  I knew that he was marking his wake-up time in his notebook that he uses to record all that important information about his life.  Later he slowly made his way down the stairs.  I noticed that he had on a different pair of pajamas than he had worn to bed, and I knew right away what had happened.  I went up to his room after he and I talked for a minute to gather up his wet linens…..all of them, including his waterproof mattress pad.  Poor Aaron.  Such hard seizures take a toll on him, and can be embarrassing as well.

 

So the day began in earnest with mounds of laundry and mounds of Christmas preparations and plans to accomplish.  I was thankful for the time that day to prep and plan, but as the day wore on I was very aware of my fatigue…..fatigue that was probably only going to increase as the week continued.

 

That evening, as I finally cleaned off the kitchen table to some degree, I was looking forward to a little time to chill out.  Catch up on Facebook, look at emails, read the news…..   But of course, I wasn’t downstairs very long before Aaron came thumping down the stairs.  First he talked to Gary about the movie he had finished watching today, and then the current movie he was now watching.  Soon he came to me at my computer, and began the same recitation.  Gary and I finally had to tell him that movie talk needed to stop.  We were depleted when it came to his long movie reviews and endless questions.

 

I had told Aaron earlier that maybe we could play a game of SkipBo……emphasis on MAYBE.  As Aaron left me at my computer, the last thing I really wanted to do was to drag myself back upstairs and play a game of cards with Aaron.  I was tired.  And I was very weary of listening to all the movie talk.  But we hadn’t played SkipBo in a while.  This time of year takes much of the fun time away.  I felt badly for Aaron, who asks me every single night of his life to let him know if we can “do something, like SkipBo …..”

 

It was around 9:30 when I went upstairs and asked Aaron if he wanted to play a game of SkipBo.  He was very happy to hear me ask that question, so while he took his pills I shuffled the cards.  We had a normal game, with me having to monitor Aaron’s every move in case he cheated and with Aaron thinking he had to monitor my texting with Andrea.  I could feel my nerves getting a little more worn.  Of all nights to have a slow game, this was not the night!  But was it ever a slow game!  Where were all the 3’s?!  I was getting irritated for sure.

 

Finally the game was over!  I wasn’t nearly as happy about winning as I was happy that I could go to bed at last……after turning off all the Christmas lights, fixing the coffee pot, helping Aaron get his bed all perfectly ready, and listening to his non-stop chatter.  Ugh!  All these thoughts were going through my mind as I put the cards back in their box.  I looked up then to see Aaron sitting very still across the table from me, peering down at something on the table.

 

“Mom?” he asked.  “What’s this?”  I thought he was pointing to a little indention on our distressed kitchen table that’s become much more distressed under Aaron’s attention.  I brushed him off with a quick “I don’t know.  It’s just a little dot.   A little mark.”

 

Aaron wasn’t deterred.  “No,” he said.  “It’s sparkling.”

 

And I knew then what “it” was.  “It” was a tiny little piece of glitter from all the wrapping paper and glittery tissue paper I had used that day.  Of course, Aaron noticed this miniscule piece of glitter that to most of us would have gone totally unseen.  Or seen, but not cared about.

 

Not so with Aaron.  He was intrigued by the tiny sparkle that caught his eye.  He knew that it was worth exploring, so he did.  Furthermore, he hoped that I would do the same.  I was headed to the coffee pot when I stopped and turned around.  There sat Aaron, pointing to the itty bitty glitter, and I was drawn to that scene as I stood there for a few seconds.  I smiled as I realized that I should not miss this moment.  So I walked back over to the table, and I bent over the little glitter particle with Aaron.  We both smiled as we noticed the glitter’s tiny shimmer.  I realized that this glitter wasn’t round, but that it had definite sides.  I counted six sides, and so Aaron and I talked about the fact that this glitter piece was in reality a hexagon.  It was pretty and sparkly and more complex than either of us realized until we took the time to look at it carefully.

 

All day today I’ve been thinking about that glitter moment with Aaron, and what I would have missed had I dismissed his interest in favor of a coffee pot to fix and Christmas lights to unplug.  I would have missed a sweet moment with Aaron……a time of simple sharing…….a smile……a discovery.

 

At this time of year, especially, but at any time of year, I need to often remind myself to stop my fussing and flittering……and to take some time to see what Aaron sees.  Take some time to see who Aaron IS.  See the world through his eyes, with all its complexity and its beauty.

 

And to apply this lesson to so many other areas of my life as well.  Stop to see what’s around me that’s not so obvious, lest I miss out on some real beauty and some sweet moments.  Don’t let my schedule or my tiredness rob me of discovering some sweet moments with those I love…..or with those whom I need to know better…..or with those that I can help.

 

Coffee pots and other chores will always be there.  Glitter has a way of blowing in the wind and never being seen again.  I need to treasure it while I can……with Aaron, of course.

 

The Nightie……..Retold

 

While in Wal-Mart the other day, I noticed that they are in full Valentine’s Day mode.  Candy, cards, flowers, clothing………..which sends a little shiver up my spine.  Not because I’m so wild about all the Valentine’s Day commercialism, but because of what happened when I was in Wal-Mart with Aaron several years ago.  I decided to share this story again because I realize that many of you haven’t read about that little incident.  Plus it’s good therapy for me to write about it……to let it out.  I’m actually not in therapy, but after reading this story you may think that I should be.

 

Aaron and I did our typical entrance into Wal-Mart on that particular day…….which means that Aaron stopped dead in his tracks in the middle of the crossing as we headed to the entrance.  He then held out both arms, like a policeman stopping traffic, which garnered all sorts of attention and stares.  I told him to stop like I always did, and he told me that he just wanted to be sure the cars stopped, like he always did.

 

Once in the store entrance, while I got a cart, I looked over and saw Aaron staring up at the security camera.  He had a huge smile on his face and was flashing the peace sign with both hands, while I’m sure the security personnel were busily trying to ascertain Aaron’s threat level.  Oh brother.  I whisked him on into the store, where I gave him the list of do’s and don’ts as he decided to head by himself to the video section.  It was mostly don’ts.

 

Aaron, don’t make the passing gas sound.  And you know why.  People think it’s you passing gas for real, or worse yet, when I’m with you they think it’s ME.  No, it’s not funny.

 

And no fox whistles.  That could get you in some trouble with boyfriends and husbands.

 

And lastly, as he took off down the aisle, I told him not to run.  There he went, walking briskly with both arms swinging furiously and his rear end swaying back and forth.  Quite a sight.

 

I picked up a few things and then headed over to electronics to pick up Aaron.  He was going with me to the grocery section.  I saw him looking at videos, and after a brief look at whatever new movie he wanted, I took off down the center aisle with Aaron close behind.   I wasn’t paying much attention to what was displayed beside us as we walked………right there on the side of that main aisle.

 

Valentine nighties.  Lots and lots of little nighties.  Red ones……black ones…….animal print ones.  Some with feathers, even, and others with sequins.  My internal alarms should have gone off.  You see, Aaron is attracted to the unusual……..and these tiny nighties were most unusual to him.  But no, I was focusing on peanut butter and tea bags and frozen mixed vegetables…….not on little, very interesting Valentine nighties.

 

But Aaron noticed them.  Oh yes, he did!  Something else I didn’t notice was that Aaron had lagged behind me……..quite a ways behind me.  Suddenly I heard his unmistakable loud voice saying, “MOM!”

 

I turned around in the middle of that very wide aisle full of very many people…….and there stood Aaron, a huge smile on his face……..and holding up a little tiger print nightie.  A very tiny tiger print nightie.  Things seemed in slow motion from that point forward.

 

“MOM!” he repeated.  “YOU NEED THIS!!!!”

 

I just stood there, sure that most of the people passing me were thinking, “No, young man.  Your mom does NOT need that.”

 

I wished that I was Korah.  You remember Korah, of Old Testament fame, who sinned against God and was swallowed up by the earth as punishment.  I would have welcomed that.

 

But there was no escaping my large, very happy Aaron standing there holding this unique very tiny tiger nightie way up high for me and all the other hundreds of people there to see.  OK, there weren’t hundreds but I sure felt like there were.  What could I do but tell him to hang it up, and turn and walk once again toward the groceries?  I couldn’t wait to stick my head in amongst the frozen vegetables to cool my flaming face.

 

Aaron couldn’t understand my embarrassment at all.  He thought that this was a very funny moment but not awkward.  Why wouldn’t mom want to look at this cool tiger print little thing?  I just told him to trust me on this, and I was very thankful when we were headed home.

 

No way was I going to tell him that I liked the red one with the feathers better.