Saturday, March 28, 2015

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.


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.






Monday, March 23, 2015

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.


Thursday, March 19, 2015

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… 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… 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… 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. 

Monday, March 16, 2015

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. 

Tuesday, March 10, 2015

The Back Burner

Gary and I live in a house that was built in the 70’s.  We’ve done some updating throughout the house, but there’s still a lot we need to do.  In our kitchen, we have one remaining relic from the 70’s – our JennAir stovetop.  I’m sure that in its day, that stovetop was very current and perhaps rather expensive.  But those days are long gone, and now our JennAir is definitely past showing its age. 

Yet it still works just fine.  Well, except for the left back burner.  That burner died last year.  Gary worked and worked on it, to no avail.   So off we went to a reputable appliance dealer last year to look at other stovetops.  We had a contractor that they recommended come to our house to give us an estimate of what it would cost for a new stovetop to be inserted along with an exhaust system, and some new countertops while we were at it. 

As we tried to make our decision, we had some unexpected financial expense occur, so we put our possible kitchen plans on hold.  I’ve actually managed just fine as I’ve cooked with the loss of a burner….a large burner, to boot.  Even the extra Thanksgiving and Christmas cooking wasn’t a problem.  Yes, there are times I’ve missed that broken back burner but I’m very thankful for the one that does work.

I’m thinking of those stovetop burners today because this morning I read Psalm 13.  No, David wasn’t talking about JennAir stovetops, but in a sense he was talking about a saying we often hear about back burners.  We have a saying about something we will deal with later, or something that is put out of our mind for awhile.  We say we have, or we will, put that on the back burner.

But have you ever felt like YOU are what’s on the back burner?  Do you ever feel like your life has been derailed by events you can’t control, and that things are at a standstill?  Do you question why things have turned out this way, and why God seems to be either silent or not changing things the way you want?

If anyone had a reason to feel like he was on the back burner of life, David did.  He played music for King Saul, was beloved by the people, a champion in battle, and was to be the next King of Israel.  But David ended up running for his life from the murderous King Saul.  David slept in caves as he hid in the mountains with his rag-tag group of followers.  There seemed no end in sight for him… answers to his questions or his prayers.

“How long, O Lord?  Will you forget me forever?” David asked God in Psalm 13.  “How long will you hide your face from me?”

Then David does what he’s always done….he prays.  He prays even though he’s prayed many times before, and still seems to receive no answer.  I’ve been there.  Have you?  “You pray and pray and God does not pay attention; He hides His face, you say; you plead and cry and there is no relief.  So what do you do?  You go right on praying, of course!  To Whom?  To the God Who has not heard.  Is there any other?  This is lousy logic but excellent faith.”  (Dale Ralph Davis)

Sometimes all we have when we’re on that back burner of life is faith, even when we don’t feel like God hears us.  We know in our head that He hears, but we don’t see it and we don’t feel it.  After all, didn’t the writer of Hebrews say that “Faith is the assurance of things hoped for, the evidence of things not seen?” 

David’s assurance in his life, as he sat on that back burner, began as he said in Psalm 13:5, “But I have trusted in your lovingkindness.”  That word is the Hebrew word, “hesed.”  It’s love that refuses to let us go.  So no matter where we are, and no matter what we’re going through, as God’s children we can count on His love that keeps on keeping us, never letting go of us. 

What’s your back burner today?  Is it a chronic health condition that has you sidelined?  Do you have a difficult marriage?  Are you lonely and forgotten?  Have your children disappointed you deeply?  Have others been given the jobs or ministries that you used to do?  Is age catching up with you? 

Whatever your back burner experience is…..whatever is making you feel trapped or useless…..whatever is making you question God…..don’t allow this time to be wasted.   Don’t be like my left back burner, cold and dead.  Be like the other back burner, working away back there.  Keep praying, even if you feel like David and wonder if God is hiding His face from you.  Know that God loves you with a firm love that won’t let go. 

And know that being on that back burner doesn’t mean you’re abandoned.  It means that God has set you there for a time and for a purpose.  And during that back burner time, be working in whatever way you can for God.  Be like David, who wrote some of his most profound Psalms during his time on the back burner. 

Just see what God can do through you and with you during your time on the back burner of life.  God can cook up something amazing on those back burners!     

Monday, March 9, 2015

My Note From Aaron

Is it 12:08.....
Ah, the time change of this past weekend has come to bite us.  We knew it would be difficult for Aaron to accept this change.  It nearly always is.  He doesn’t mind it so much when we turn the clock back one hour, but this forward one hour business is not his cup of tea. 
....or 1:08?!

“What??!!” he exclaimed on Saturday during supper when we broke the time change news to him.  No matter how much I tried to make it seem like it wasn’t a big deal, it still was a big deal to Aaron.  It was an even bigger deal at bedtime.

“Mom!!  Come on!  I need to say goodnight!  It’s not really 10:00, it’s 11:00!  Come on!  It’s late!!” 

“I don’t think I’m gonna read tonight.  It’s late!  It’s already after 11:00!!  I’m just going to sleep!  Do you think that’s a good idea?” 

I told him it was a very good idea.  And I wish that this morning had held some good ideas for getting him over the Monday time change hump, but good ideas were few and far between this morning.  Add in the fact that Aaron didn’t go to his day group on Friday because of his meltdown on Thursday….and today was his first day back since that incident……and add in that I overslept today….and Aaron wouldn’t wake up today…..not a good morning.

He woke up grouchy.  I had to keep speaking to him in order to wake him up, and my voice first thing on this kind of morning is not what he wanted to hear.  Not even his mugs of coffee sitting beside his desk helped on this morning.  Not even all the advice I’ve read, been given, or given out myself helped this morning.  Aaron was grouchy to the bone.

This Kansas City Chiefs doll that Aaron gave me a couple years ago pretty much matched both my face and Aaron’s face as I drove him to meet his group. 

But when we pulled up beside the Paradigm van, Aaron opened his door….and then closed it again, refusing to budge.  I wasn’t going to fight it, so I apologized to his driver and headed home again with Aaron.  I was deep down really irritated.  Totally mad, actually.  I had some strong words with Aaron as we drove home, and I wasn’t all cheery even when he apologized. 

Straight upstairs we both went, Aaron to his room and me to my bedroom.  It wasn’t long before I heard Aaron’s steps coming up the hall.  He walked in my room and handed me something.  It was a note that he had just quickly written.

Oh my goodness!  How could I stay mad after I read this note?  I am “preety?”  And I am “sweat?”  I took a shower this morning!  HaHa! 

And along with the “I love her,” Aaron quickly and sincerely gave me a huge hug.  Any hugs from Aaron are rare and welcomed, but a huge hug is definitely a special treat. 

Of course, my heart melted, even as I knew that Aaron might be yelling at me again tonight.  But at that moment, Aaron was feeling terrible about not going to Paradigm, so he jumped at my offer to drive him there on my way to run my errands. 

“Mom,” he said as he put his jacket back on.  “I just thought I could write that note and make you happy to me, not rude like you were in the van.”

I was rude?  But I didn’t want to argue and I didn’t want to take away from this special moment, so I just smiled and the two of us went on our way after picking out a new oldies CD to listen to during our drive.  I was happy to him all the way there, and he was happy back to me.

He gave Barb at Paradigm a huge hug, too, and she and I talked awhile about the complexity of Aaron.  How do we find what will make him calm….make him motivated…..make him polite to others?  There are no easy answers, and there never have been.  She showed me her latest notes from Aaron on her desk calendar.  Notes like mine from today.  Notes that we see and read, especially on Aaron’s grouchy days, to remind us that there is a side of Aaron that wants to be sweet and kind. 

I’ll keep Aaron’s note on my desk, where I can see it, but where he can see it as well.  I want him to realize that kindness from him is a quality that is worth holding onto and remembering. 

I’m not sure yet if I’ll also try to clear up that “sweat” comment, or just take it that he meant I am sweet.  Maybe I don’t want to know. 



Friday, March 6, 2015

Still Our Sweetie Poo

I got one of those phone calls yesterday that I don’t like to receive.  It was Barb, from Paradigm, trying to tell me about an incident with Aaron.  It was hard to hear her, though, because she put it on speaker and I could hear Aaron in the background.  He was yelling as he tried to explain his story, and he was crying, and no one had to tell me that he had just had a meltdown.  My heart sank.  It’s been awhile since we’ve seen this with Aaron.  I felt drained when I got off the phone, and I wasn’t even there when Aaron lost it.  It’s just very discouraging to feel like things are going along so well, and then BAM, he hits that wall again. 

In his frustration, he broke his watch and he broke his brand new two day old glasses.  This is very typical of Aaron when he gets that upset.  He will break something that’s important to him, and then afterwards he’s just eaten up with remorse.  The remorse comes from all of his behaviors when he loses his temper, but he knows that breaking things comes with repercussions.  He won’t get a new watch right away.  He didn’t know if his new glasses could be fixed. 

The repercussions with people’s hearts is an area that he is not quiet adept at understanding.  He’s doing better with empathy as he’s gotten older, but he is usually very narcissistic and only thinks of himself when he is in a rage.  I guess many of us are that way when our emotions take control, but Aaron is often that way even when he is even keeled.  Thinking of others and what they are feeling has been long in coming for Aaron’s autistic mind.  He’s getting there, very slowly, sometimes more than others.  For instance, not long ago he found out that Andrea had a migraine.  The day that she and I were talking on the phone and she mentioned it, Aaron was frustrated that our phone call was taking my time away from him.  I chided him when I got off the phone about how uncaring he seemed.   The next day when she called, he said to me, “Tell Andrea I cared for her migraine!”  He was very pleased with himself that he cared, because even he knows how hard it is for him to feel that emotion, and because he felt guilty that he had not felt it at first for his sister.

He came home yesterday, face and eyes all red from crying.  He told me what had happened, so we discussed it as much as I felt that he could handle.  He lets me know when he has had enough.  Barb and I talked privately when Aaron was up in his room, and Melinda and I texted.  I felt like I had a good grasp of what had happened, although part of it was still fuzzy.  That’s why I tried to talk to Aaron again after Wheel of Fortune was over, but he did not want to talk about it further.  The book was closed, in his mind. 

I was almost asleep last night, at 11:30, when I heard our monitor on the nightstand beeping.  It meant that Aaron had turned his unit off in his room.  And it wasn’t long before our bedroom door opened and Aaron strode in to tell me that he had turned his monitor off and he had no intention of turning it back on.  There!

“Oh boy,” I thought.  “Here we go.”

Aaron has these residual effects from his behaviors…..effects that show up hours after the incident is over and hours after we have talked about it.  I followed him to his room, noticing his agitation.  He turned and told me that I was mean, that Dad was nicer, etc., etc.  I knew that my second conversation with Aaron was the cause of this, but I couldn’t take it back.  He thought I didn’t believe his version of the story….that I would make him leave Paradigm……and on and on.  And he assured me once again that he was NOT turning on his monitor.  That was the biggest sign of his rebellion that he could come up with at the moment. 

I left his room frustrated, and Aaron was frustrated, and the monitor stayed off all night.  This morning, I left Aaron alone when he got up.  Even when he stood staring at me silently, I did not speak to him.  I poured his coffee and carried it upstairs.  I got myself ready and I opened my bedroom door, and finally he walked in and told me that he was not going to Paradigm today.  I knew that was coming, so I asked him if he would go on Monday and he gave an exuberant yes. 

So many of my decisions at these times are uncertain.  Is it right to not make him go today to his group?  Do I still get him his Friday goody bag?   Was this outburst because of his new seizure drug….the one that can cause anger?  Do I take him off this drug?  Or do I wait awhile longer to give it more time? 

Well, I didn’t make Aaron go to Paradigm.  I know this is his typical response to such stressful situations, and I know that he does need time to emotionally recover and to sort it all out in his head.  His big, impulsive hug for me later showed me how thankful he was that I let him have some time and space today.  I still don’t know about the new seizure drug and what to do there, but I think I’ll give it some more time.  I think.  I did not get him his Friday goody bag.  He hasn’t even asked about it because he knows that he really messed up.  My mother heart wants to take care of him… blame the autism….to quote the professionals about his emotional deficits.  But I know he also needs consequences, and so the goody bag will not happen today.

I did take his glasses to the optometry shop.  “Wow!” the technician said.  “He sure did a number on them.”  I didn’t have Aaron with me because I wanted to explain what had happened, but not in front of Aaron. 

“Yes,” I agreed.  And I wanted to add, “You should see the number he’s done on my heart, and on the hearts of others.”  But of course I didn’t say that. 

By some miracle, the young man brought Aaron’s glasses back to me later, all fixed and ready for Aaron to wear again.  I wish it would be as easy to fix the situation of yesterday, but that will take more time. 

Later, Aaron and I took Jackson for a walk around our neighborhood circle.  It’s a beautiful day, perfect for a walk.  When we got home, Aaron quickly grabbed his mulch bucket and situated himself out in the flower bed for some mulch time.  He stayed there for nearly an hour, relaxing and sorting out his thoughts with each little piece of mulch that he broke.  It’s time that he needed…..quiet, peaceful, reflective time for him. 

Wouldn’t it be wonderful if mulch would cure autism?  Or if mulch time would give me all the patience and wisdom that I need?  I would say, “Scoot over, Aaron!  Make room for me!  Will you share your bucket?”

I know every parent of autistic children can understand how helpless I sometimes feel.  How embarrassed at my son’s behavior.  How frustrated and then sad at his response. 

Then I think of Barb, who loves Aaron and who said, “Tomorrow’s a new day.  We’ll just put this behind us and go forward.”

And Melinda, who also loves Aaron, and who said, “Aaron informed me that I am NOT his sweetie poo anymore!  Well, he is still my sweetie poo.”

That makes me smile, and it makes me thankful for those that work with Aaron and love him even on the bad days.

We will, and we do, move forward.  Today Aaron said, “Mom, I’ll turn my monitor on tonight.”  It’s his way of telling me that he’s better now, and that he is ok with me…..mean old Mom of last night. 

Yep, it’s a new day and we will go forward.  And I just hope Aaron knows how many people cared for him when he messed up.

He’s still our sweetie poo!