A Winning Moment

Aaron has had a mostly good week, which means that there were ups and downs as always.  His recent staph infection returned, so I took him to the doctor on Monday.  Now he’s on another round of antibiotics, which isn’t what we like but it’s what he must do.  Tuesday was a very happy day, but Wednesday was not a good day at his day group.  Barb called me, put the phone on speaker, and I could definitely hear the frustration in Aaron’s voice.  We all wish we knew what leads him, in his mind, to the point of no return where he simply reacts without thought of the consequences. 

He was exhausted that night, so on Thursday morning I just let him sleep.  He slept for almost twelve hours, waking up too late for me to get him to Paradigm and also make it to an appointment that morning that I had.  So later that day we enjoyed some down time together.  I took him to Great Clips for a haircut, which you know he loves, and to Dillons for another favorite….a Cheddar Pasta Salad for lunch.  We took Jackson for a walk in the beautiful warm weather, too. 

Of course Aaron found the new chairs at Dillons and had to try one out!

Aaron was in a reflective mood on Thursday, which he often is after a rough day.  He was in a giving mood as well, wanting to buy some items at the store for his friends.  I try to steer him to smaller things, like pieces of gum, instead of large items. 

“Mom?” he asked.  “Natalie bought me a gift when my birthday came out.  Can I buy her a gift when her birthday comes out?”

Can you tell how often he talks about the date that a movie is coming out?  J

As we talked later that day, Aaron told me that he wanted to write a note to three of his friends who were very good to him when he was so angry the day before.  He’s never wanted to write a note for such an occasion that I can remember.  I think he had this idea because he had just written two thank you notes for some Christmas gifts. 

I gave him some note cards that I had and he proceeded to write his notes of thanks.  They were short and sweet, which is all that Aaron sees as being necessary.  It’s the sweet part that I love, and the fact that he thought of this all on his own was extra special. 

Don’t you love how he signs his name?  Years ago when we told him to sign his name on a note, he did just that. 

Signed, Aaron.

Except look at the way he spells “signed.”  He combines the word “sigh” and “sign.”  I think that’s pretty awesome.

He took the cards with him the next morning, slipping them under his jacket as he got out of the van at Paradigm.  I could tell he might be embarrassed about them.  Sure enough, when I asked him after he got home if he gave the girls his notes, he looked sheepish.  Apparently, he chickened out and left the notes on Barb’s desk.  I don’t know if he’ll get the nerve to give the notes to them or not.  I’ll gently encourage him to do that over the weekend, but I don’t know if he will.

Some victories with Aaron are partial, or come in pieces that are spread apart.  But a victory is a victory.  To see Aaron showing thankfulness and then expressing it in writing, on his own, is a huge victory.  The winning moment may not come in the actual giving of the cards, at least not this time. 

It’s his written heart that warmed mine.

And I’ll take it.

A Fight to the Finish

I’ve written in the past about how much it means to me when someone “gets” Aaron.  You know what I mean.  It’s when a person out somewhere in a public setting reacts to Aaron in a way that makes me know they totally understand him.  Or at least partially understand him.  I don’t know that even Gary and I on some days totally “get” Aaron.  This past Friday night was an example of both. 

Aaron and I went to Subway to get our special Friday supper, as per Aaron’s request.  One of the girls who began with our order was very nice, but I could tell that she was nervous with Aaron.  She was unsure of what to say to him, and very unsure of what he was saying to her as he robustly placed his order. 

“Can I have a sub?” he bellowed, with me standing close by patting his arm in an effort to soften his tone. 

“And can I have extra cheese?” he continued bellowing.  “My Mom says I can’t have extra cheese!” he rambled on as she was just saying that he COULD have extra cheese, and so she glanced nervously at me. 

I told her to go ahead with the cheese, which caused Aaron to bend over and rub his hands together as he laughed in delight…..which caused her to attempt an uncertain smile as she placed the extra cheese on the meat, all under Aaron’s watchful eye.  I wanted to tell her that it was OK….that Aaron was loud but harmless…..but I didn’t do that with Aaron standing right there.  I just hoped my smile would convey to her what I was thinking.

Just then, the manager appeared and began helping with our order.  I remembered her and she remembered Aaron.  This girl’s mother worked with special needs and so she grew up around other Aarons.  Therefore, she was very relaxed and affirming toward Aaron. 

“What you need, Buddy?” she asked Aaron as she waited for him to complete his order.  Nothing he said or did from that point on phased her in the least.  I think the other server was as happy for her to take over as I was.  Aaron was just very happy to finish his requests, figure out the mayonnaise issue, and watch as his sandwich was wrapped and labeled. 

Yes, we deal with watching others try to understand our Aaron nearly every day.  I wanted to hug the two who were on duty at Papa Murphy’s a couple weeks earlier.  They completely engaged Aaron on his level as they made our pizzas.  Aaron stood there in total happiness as he loudly talked to them about aliens and spaceships and rubbed his hands together like crazy as they responded to him as if he was talking to them about school or sports. 

Then there was the young man behind the counter at the theater yesterday, his eyes big with uncertainty as Gary and I both exited the restrooms at the same time.  Aaron was talking to him about the Star Wars movie, I think it was, that we had just seen.  All I could focus on was the “Would you please rescue me?” look on the boy’s face as he tried to figure out what to do with Aaron.  Aaron loves a captive audience, and that boy was just that.  He looked it, too, as Aaron talked loudly – of course!- and rubbed his hands together and laughed.  We tried to quiet Aaron and lead him away but Aaron had more to say.  As we finally left, I laughed and I thanked the shocked young man.  I really wanted to walk back to him and say, “You have just encountered the amazing world of autism!”  But I knew that Aaron would follow me and pick up his story where he had left off, so I left well enough alone as we walked to the van, Aaron talking all the way…..of course.

All of these are mostly “Ha-Ha” funny moments.  They may be embarrassing to us at times, or frustrating, but they are not usually awful.  Those more disturbing moments happen at his day group and occasionally at home.  That was also the case on Friday night.  We went from hugs when Aaron came home from his day group to the joy of ordering and eating subs to the downward spiral of Aaron’s cascading emotions.

It all started with me realizing that Aaron wasn’t telling me the truth about his rough day at Paradigm.  I made an off handed comment that hurt Aaron’s feelings, so after we watched Wheel of Fortune he turned to me and had “that” look on his face and in his eyes.  I knew then that he had started down that track of frustration.  Time proved that evening that Aaron wasn’t going to be easily derailed.  His emotions were in a turmoil, as were ours.  Yet if we escalated, it would only serve to further escalate Aaron, which is the last thing that needed to happen.  He escalates very well on his own, thank you.  Gary and I tried to exercise firmness with calmness.  Just when we hoped that Aaron had calmed, though, we would soon hear his heavy steps coming downstairs to engage us once again in the battle that was going on in his head.  He was almost manic in his laughter and in his efforts to unsettle us.  It truly is amazing to see, but not amazing in a funny way.

It’s the other side of Aaron that we don’t see that often at home anymore.  It’s him in a fight to express himself and voice his hurt over his own actions, or over ours.  But he simply cannot tell us with calm and rational words what it is that is bothering him.  Therefore, he chooses something that he knows will either alarm or frustrate us, and he will go off on it over and over again.  Just when we think that our words of great wisdom have reached into Aaron’s head, he starts all over again on that same issue and our heads just bow down in defeat. 

I sat in Aaron’s bedroom with him late that night.  He sat on his bed, legs dangling, trying to express himself and his emotions but clearly unable to do so in the way you and I would.  But he was winding down, I could tell.  I just needed to wait patiently, listen closely, and pray silently.  I literally bowed my head in prayer as Aaron talked.  I knew he saw me but he never asked what I was doing.  He may have thought Mom was falling asleep.  After all, it was after 11:30….way past both our bedtimes! 

At last he said he was going to bed.  I watched as he pulled back his covers and then began arranging his snake, skunk, and frog in perfect order.  I wanted to rush over and yank the covers up over Mr. Snake as Aaron worked and worked and worked to turn his lower skinny stuffed body just the right way.  But I knew that one wrong move could open up Aaron’s emotions again, so I just stood and wearily watched.  Finally all was well with the stuffed animals and the pulled up covers. 

I asked Aaron if he was reading before he went to sleep.

“No,” he said with no emotion.  “It’s 11:47.”

I was relieved.

“Mom?” he asked.  “’Guess what?”

And I knew he had nothing to say.  He does this when he wants us to stay with him.  He asks, “Guess what?” and then tries hard to think of something to say.

“What?” I answered.

“I’m wearing my watch lower,” he said as he pulled his shirt sleeve up. 

Maybe it was a few centimeters lower, but it sure was hard to see the difference.

“Mom?”  he asked again.  “Guess what?”

“What?” I repeated

“When Independence Day Resurgence comes out, do you think the theaters will be crowded?”

Sigh.

“I don’t know, Aaron.  We’ll just wait and see,” I replied.

“Mom!  Look at this!”

And at 11:49 I was looking at the back of the original Independence Day movie box and talking about the plasma ray coming down from the spaceship.

Oh dear.  Would this night ever end?

But if finally did, only after Aaron went up and down the steps several times to tell Gary about plasma rays and new Independence Day movie news and to say good night once again. 

Earlier during the evening, when Aaron was working through his anger, he began feeling badly about his actions.  He came to me in the kitchen and had something in his hand he wanted me to take.  I held out my hand, and Aaron gave me some of his Mike and Ikes.  They were sticky and I’m sure covered in multiple germs, but he stood there waiting for me to eat them.  So I did, praying silently for God to please strengthen my immune system at that moment. 

“I wanted to give you these Mike and Ikes since I’m sorry,” he explained as he waited for me to enjoy them.  So what could I do but eat them? 

And what can we do but try our best to do what we hope others will do with Aaron.  We appreciate the understanding that strangers show to Aaron.  Can we do less?  Understanding what makes him tick, what makes him upset, what it is he is really trying to say when he is so upset……this is all part of figuring him out. 

It’s “getting Aaron.”  Not condoning behaviors, which we don’t, but understanding the behaviors as much as a parent of a child with asthma understands an asthma attack.  I thought of all this when I was sitting in Aaron’s room with him, watching him come to the end of the fight, and realizing how vital it is that I understand.

It means as much to Aaron for us to understand as it does to us for others to understand.  Complicated.  But so very necessary. 

Aaron?  Guess what? 

We’ll keep trying to understand. 

And I should keep a box of Mike and Ikes stashed somewhere for good measure.

Contented New Year!

I decided last night to sit by our Christmas tree and do a little reading by the soft glow of the lights and a table lamp nearby.  The tree will be down soon, although I’m resisting that notion.  The rush before Christmas and the craziness during Christmas doesn’t afford many opportunities to just sit quietly by the tree, relishing its beauty and enjoying its warmth.  Now the seasonal rush is over and I’m not wanting to part with my tree.  But I must.  It’s a new year…..a new season…..and normal life returns. 

The book I was reading is authored by Richard Swenson, MD.  The title is Contentment: The Secret to a Lasting Calm.  This title makes me smile as I think of our life with Aaron, which is rarely calm.  God has much to teach me and I wonder if I will ever learn.  I recently read Ann Voskamp’s book, One Thousand Gifts, which stresses the importance of gratefulness.  Swenson’s book is similar, but develops the issue of being content despite our surroundings.  Here is a quote I read last night:

“The best kind of contentment, the truest kind, is a state of feeling unencumbered.  It is a state of absence of fear or anxiety about what we own or don’t own.  It is about freedom from comparison, regardless of what our neighbor has.  It is about lack of pretense, so devastating to authenticity and so tedious to maintain.  And the best kind of contentment, the very best, is divorced from circumstances.”

My circumstances so often dictate my mood, and there in the bullseye of my life…..my circumstances…..stands Aaron.  We love Aaron.  We have chosen to keep Aaron at home at this season of his life.  Yet living with Aaron is like riding a roller coaster as we experience the highs and lows of his health and behavior issues.  This holiday of Christmas highlights all of Aaron’s needs and emotions like no other.  He’s excited, happy, overwhelmed, stressed, and frustrated….just like the rest of us.  But he certainly doesn’t contain or handle those emotions, most of the time, in ways that are acceptable.

Aaron is like our gifts under the tree, all different shapes and sizes and wrapped in various colors and designs of paper.  We have the giving side of Aaron that makes us proud, but can also cause some trouble.  The Friday before Christmas, Aaron and I went back to see his six friends at their residential home.  We took pizza again, and also took them some Christmas gifts.  Aaron was so happy to do this, as he loves to give.  He helped me put the gifts in bags the night before, turning up his nose in disgust at the yucky lip gloss and body wash.  We laughed and had a great time, as we also did when we visited the girls and gave them their gifts. 

Aaron also gives money away at his day group, which is not allowed.  It’s a nice gesture from Aaron, but it isn’t what he is supposed to do.  It gets out of hand.  I sometimes let him take some gum that he can give away, or cookies, but giving others his money is something that Aaron has always wanted to do, even as a little boy.  We dealt with that issue cropping up again over Christmas as well. 

We have Aaron’s health issues to always monitor as we listen for seizures during the night or when he naps.  Thankfully, he didn’t have any seizures that we know of during Christmas.  But he broke out in some ugly bumps, so on the Monday before Christmas I took him to the doctor.  Gary was off that day, and we were going to take Andrea and her boyfriend Kyle to lunch and a movie.  We were looking forward to that so much, but instead I found myself seeing to Aaron’s needs once again.  And once again I had a choice to make concerning that persistent issue of contentment, despite my circumstances.  Sure enough, Aaron had a staph infection and so I was glad I had taken him in, but still disappointed about our change of plans. 

Aaron’s behaviors come in assorted shapes and sizes, and can change quickly.  Life is pretty stable with Aaron at home on a normal day, but when he goes to his day group he becomes loud and full of behaviors.  The same is true at home over Christmas, with all the change in his routine and the house full of people.  Aaron has to share his time with others and his structured world is turned upside down.  All the talking and laughing and extra noise is often overwhelming to him.

Andrea’s boyfriend, Kyle, was here for the whole week.  We were concerned about how Aaron would react to him.  But Kyle was a natural with Aaron, treating him as an equal and being totally comfortable around him.  What a relief!  Kyle certainly passed the Aaron test!  Even when Aaron became unkind, Kyle didn’t show any reaction and he understood.  Aaron insisted on playing Christmas Bingo with us, which he usually detests, and also even played the Hershey’s Kiss game…..trying to open the kisses while wearing bulky silicone gloves.

Aaron can’t stand the silliness of games and parties, so playing these games was a stretch for him.  Aaron targeted Kyle during the first Bingo game he played with us, being rude to Kyle as he blamed him for his own discomfort and frustration.  The next time Aaron played with us, the following night, he did much better.  And during Skip-Bo, while there was the noise of Star Wars being watched by Andrea and Kyle in the background, Aaron became very bothered by the lack of his usual quietness as we played. 

“I wish Kyle would leave this house!” Aaron said, over and over. 

“But Aaron,” I replied.  “You like Kyle and you’ve had fun with him.  Let’s talk about what’s really wrong.  You just don’t like all the extra noise and things being so different right now.  Right?”

“I wish Kyle would leave this house!” came Aaron’s response. 

Sigh.

Aaron also had similar comments toward friends of ours that spent the night with us this week.  He went from making them laugh the night before to being disrespectful the next morning.  I understand the reasons because I understand how Aaron thinks, but it’s still very embarrassing.  Thankfully, Dawn has a special needs daughter who also gets overwhelmed, but still…..

There go my circumstances again!  And the choices I must make, and often fail at doing so correctly.

Up and down!

And there were many good moments…..special times with Aaron as he enjoyed the week of Christmas.  He LOVES Andrea’s dogs, and they generally tolerate him pretty well.  Christmas morning was especially sweet with Aaron and Darcy.

And Aaron makes us laugh with many of his comments, of course, and his actions.

So here we are, with memories of Christmas still fresh and with a new year just beginning.  I need to find Aaron a new autism doctor…..need to think about all those day group behaviors and why he acts that way there……monitor his sodium levels…..deal with the seizures and the meds that help, but also cause some of his behaviors…..and much, much more.

And to work on my own contentment, like the Apostle Paul said, in whatever state I am….to be content.  In a state of sadness, or a state of frustration, or fear, or embarrassment, or turmoil, laughter and joy…..

Swenson says, “Contentment is our glad submission wrapped in God’s providence.  The doctrine of providence explains that God has a plan, and that it is a perfect plan.  Since He is all-powerful, it is impossible for us to thwart the plan.  We either accept it or we kick against it, but regardless, the plan goes forward.”

Yep.  Just like Aaron goes forward, and we experience the highs and lows, the ups and downs….often hanging on for dear life. 

Instead of Happy New Year, I wish for myself a Contented New Year, despite whether I am feeling happy or not.

And so I wish that for each of you as well.

Contented New Year, everyone! 

  

The Nail Trim

I remember climbing on my Daddy’s lap when I was a little girl.  He was sitting in his chair near the fireplace, with his shelves of books on one side and his end table on the other.  His newspaper was on the end table where he could eventually read it at the end of a busy, tiring day on the railroad.  His Bible was also laying there within easy reach.  He read his Bible often as he sat in his chair. He was always ready and willing to listen to my questions about what the Bible said about this and that, especially as I got older.

 

But when I was little and would climb on his lap, I remember the gentleness that he showed.  In the early years he smelled of pipe tobacco and smoke…..that subtle odor that comforted me.  I can still see him emptying his pipe of the old tobacco and then refilling it with fresh, tapping it gently and pressing the tobacco down just right.  I can hear the sound of the pipe stem on his teeth and see the soft, swirling smoke around his head at the end of the day as he relaxed.

Dad was never too tired to listen to us kids as we talked to him.  He was patient and kind, and so wise.  Sometimes when I would climb up on his lap, he would read me a book.  Sometimes we would just snuggle.  And at other times, he would take my hands and check my nails.  If they were too long, he would ever so carefully trim each nail.  I sat very still, watching him take each of my fingers and cut the nail just right.  Then off I would hop and go on my way, not giving much thought to that simple deed that Dad performed. 

Until years later…..many years later.  The tables had turned, as they so often do, and I and my family had become the caregivers.  Dad was in his last month of life as the cancer he had fought for eight years was winning the battle.  I had been able to go home to help Jan and John as they cared for him and Mom.  It was a month of many cherished memories that fill my heart every day, especially during this Christmas season.  It was December when Dad died.  It was December and Christmas that he and Mom loved so much.

One day I rolled Dad in his wheelchair into the living room so that he could enjoy the pretty Christmas tree.  I helped him get onto the couch, his thin body so frail and weak.  Then I sat beside him and snuggled close to his bony side.  Words were few because it took too much energy for him to lift his head and talk.  But he still smiled….that gentle, kind smile that was his signature. 

As we sat there in the soft glow of the Christmas lights, I looked down at his fragile hands resting on his lap.  Hands that had worked hard, disciplined well, warmly hugged, and folded in prayer.  And I saw that his nails were so long.  How had we let them get in that shape?  So I looked in his tired face and I asked him if he would like me to trim his nails.  He slowly lifted his bowed head and gave me that smile as he said yes ever so softly. 

I got some clippers and a nail file, and I set to work on his nails.  I was afraid of hurting him so I worked very carefully, taking each finger and slowly trimming and filing.  He was very still and quiet as I worked.  Finally I was done.  He looked down at his hands and smiled again, and then slowly looked me in the eyes as he thanked me.  For days afterward, he talked about how good it felt to have his nails trimmed as he thanked me over and over. 

And just as when I was a little girl, the significance of that act didn’t hit me until later.  Dad showed me such love in the simple deed of trimming my nails when I was young.  Now it was my turn to show him the same love in the simple deed of doing the same for him in his weakened state.  His strength was mine when I needed him.  My strength was his when he, many years later, needed me.

And it was the love and guidance of Dad’s hands that led me to be there for him at the end of his life.  He raised me and my brother and sisters well.  He loved us deeply, worked hard for us, and led us to know and love the Lord. 

 

It seems like yesterday that I hopped off of his lap after he trimmed my nails, and ended up beside him on his couch trimming his nails beside the Christmas tree.  Now his and Mom’s memorial ornaments hang on my tree, and all I have are memories.  

 

But someday I’ll take his hand again in heaven, and Mom’s as well, and see them both strong and whole once more. 

 

Sexy!! Let Me Explain!

I remember well when our children were very young, and Aaron ran into the kitchen one day in our German military quarters.  He was probably in the first grade. 

“Mom!  Is ‘sex’ a bad word?” he blurted out. 

“No,” I calmly replied, though I think my heart was beating faster.  “Sex is not a bad word.”

With that, he turned and ran into the living room, where Andrea was playing.  “Andrea!” he again blurted.  “Mom said that ‘sexy’ is not a bad word!”

Wait.  How did ‘sex’ become ‘sexy?’  I just chuckled, knowing that if I made a big deal of that word then they would continue to inquire into things they didn’t need to inquire about just yet. 

Today, being a full grown man, Aaron still has that first grade mentality about that word.  THAT word!  I know that he’s seen more and heard more that perhaps has shed a little light on it, but he doesn’t seem to have what you and I would deem to be a “normal” insight into what makes the world go round…..birds and bees…..and all that “stuff.”

Remember the nightie story?  How Aaron was in the crowded aisle at Wal-Mart and held up a very revealing Valentine tiger print nightie?  I was walking ahead of him and heard him yell, “MOM!!”  When I turned around, there he stood, holding up that tiny tiger print thing.  Then he loudly said, “Mom!!  You need this!!!”

The ground didn’t open up and swallow me like I instantly hoped it would, so I am here to explain once again that Aaron didn’t have one single clue that this nightie was supposed to be sexy.  He liked it because he had never seen a tiger print nightie like that before.  Tiger print!!  How cool was that?!  And for Aaron, it ended there.  Just like I wished, for a few humiliating seconds, that my life had ended there.

For a long time now, whenever Aaron sees hugs on television, he lowers his voice and says, “Sexyyyyyy.”  He draws out that word because he knows that hugs have something to do with love.  And that love is “sexyyyy.”  It alarmed me a little at first, but I just ignore it and don’t react.  If Pat Sajak on Wheel of Fortune puts his arm around a contestant, Aaron says, “Sexyyyy.”  If a brother and sister hug, Aaron says, “Sexyyyy.”  If a man hugs his grandmother, Aaron says, “Sexyyyy.” 

And on occasion, when Gary and I hug, Aaron will say, “Sexyyyy.”  But he doesn’t say it often about us.  I wonder what that means?  When parents hug, it’s yucky?  J

There is a girl in Aaron’s day group that Aaron knew years ago.  Years ago, they didn’t get along.  And today, they still don’t get along.  Actually, they tease each other terribly and then things can get carried away…..which often means that Aaron will chase her around the room or slap her arm or something else that gets him, or both of them, in trouble. 

Apparently the other day Aaron decided that it would be funny to chase her around the room, but this time as he ran after her he was loudly saying, “Sexyyyy!  Sexyyyy!”  I’m sure this got quite a reaction, which made Aaron enjoy it all the more before staff intervened.

Now if I had a special needs daughter, and a guy that has been a huge irritant in the past was running after her yelling “Sexyyyy!”….. then I would be alarmed.  And her dad was.  He came up to the day group the next morning to talk to the staff about Aaron.  I’m so thankful that the staff understands Aaron and understands this girl and understood the whole situation.  I know how it looks to this dad, though. 

Gary and I sure wish Aaron understood all this.  We tried to explain it to him as best we could, but he still thought it was harmless fun, just like a first grader would think. 

Last night I was watching Dolly Parton’s movie of her childhood, The Coat of Many Colors.  Aaron came in the family room while it was on, watched a couple seconds of it, and hurried on his way.  I asked him if he wanted to watch it and he emphatically said no.  It was too mushy and real for him, and I knew it.

“Mom?” Aaron asked this morning.  “Would you watch The Rig?”

I told him no, and he laughed.  He knows I don’t like the creature on the oil rig.  So I turned the tables.

“Aaron?” I asked.  “Would you watch Coat of Many Colors?”

“NO!!” he replied. 

“Why not?” I asked.

“It’s sexy!” he answered.

This surprised me a little, so I asked him what he meant when he said it’s sexy.

“It’s too full of love!!” he explained.

This explained so much about how Aaron perceives THAT word…..sexy.  And how he reacts to all that love being openly shown with hugs and smiles and laughter and pure joy.  You and I are warmed by those displays of love, whereas Aaron is very uncomfortable with strong emotion. 

But he thinks it’s funny to say it’s all “sexyyyy.”  That somewhat questionable word makes talking about awkward displays of normal love more tolerable to Aaron.  He has no idea how it comes across to others.  I wish the worried dad understood this. 

I really wish all those people in the Wal-Mart aisle had understood it, too!

 

Where's The Macaroni?!

I think I may need to hide the macaroni container again.  I’ve done it in the past and now I may need to resort to hiding it again.  Why?  Because Aaron absolutely loves uncooked macaroni, and for some reason will decide out of the blue to focus on that food item.  Once that focus starts, he is not to be deterred.  We often hear him dumping them into one of his plastic bowls.  The loud clatter of uncooked noodles is hard to miss.  Into the kitchen we go, intercepting Aaron’s plot, and so back in the macaroni container go the noodles. 

 

 

I’ve offered to cook Aaron some noodles, but he wants them “raw,” as he says.  He doesn’t understand why we object.  They’re hard on your teeth, Aaron.  They’re hard to digest when uncooked, Aaron.  You’re eating all my macaroni and I won’t have any for dishes I want to make, Aaron.

He doesn’t care.  When he’s on a raw macaroni binge, which might last for days, then nothing we say or do will change his mind.  He’s a proficient sneak and can often have a huge bowl of noodles without us even knowing it.  He definitely knows how to take advantage of times that he’s at the house alone, too, which is by far the best time to have an uninterrupted raw macaroni feast.

Sometimes it’s hard to know if he’s eaten the noodles because there are no signs such as are often left with other foods that he sneakily eats.  There are no piles of individual wrappers…..no bag left in his trash can…..no drips…..no mess.

It’s hard for Aaron to sneak his chocolate milk, for instance, because he always leaves such a mess. 

“How many powders do I use to make chocolate milk?” he asked me one day, his spoon poised over the open Nestle’s Quik container.  He only asked because I happened into the kitchen.  He will use three or four spoonsful of powder if left alone, so it really doesn’t mean anything for him to ask me how many powders to use.  I may as well go outside and tell the oak tree how many powders to use as to tell Aaron.  But I tell him, regardless, and then take the spoon to actually show him that using two helpings of powders is plenty. 

“Be sure you spin it, Mom,” he reminds me as he watches to make sure I adequately stir the powders into the milk.  So I spin the powders and the milk, and then offer to carry it to his room so that there are no chocolate drips left all over the floor leading to his desk. 

Another way he leaves signs of what he has eaten is to look at his clothes.  Macaroni leaves no such evidence, such as I saw on his shirt one recent morning.  I asked him about the brown smudge on his pajama shirt.

“I was drinking my coffee,” he explained.  “I got grounds in my mouth and I had to wash it off with my shirt.” 

Of course.  Please, please put that shirt in the hamper.

He knows that some food temptations are sometimes just too much, such as the recent bout of macaroni madness.  Often, he will give me an item of food that’s in his room at bedtime because he knows that the pull is too strong and that he’ll want to get out of bed to eat when he’s supposed to be going to sleep.  One night he thumped up the hall and knocked on our bedroom door after he had gone to bed.  I opened the door and he thrust a bowl of peanuts toward me.

“Mom?” he asked.  “Could you take this out of my room so you can trust me not to eat it tonight?”

I laughed.  No need to try to explain how I don’t need to trust him if the bowl is NOT in his room.  I just loved the way he worded it.

Back to the raw macaroni.  Aaron knows that when he’s in a macaroni mood, the pull will be strong and he will have trouble resisting.  We were in Wal-Mart the other day, after he had put a large dent in my macaroni container.  Aaron was following behind me, singing, “And heaven and nature sing,” without a care in the world or a realization that he was being observed by all the other shoppers nearby.  But suddenly he was aware that we were in the pasta aisle, so he told me that I should buy more noodles.

“Mom, you should get more noodles because I’m making you lose less macaroni and cheese noodles,” he said as we walked up the pasta aisle. 

I know.  Try to figure out that sentence.  I just kept going.

“Mom!  You passed the macaroni and cheese noodles!” he exclaimed.

Yes, Aaron, and I imagine you’ll be passing them for quite some time.  No new noodles today.

Keep singing!

 

Can I Resign?

I had some nice quiet time as I sat on the couch beside our newly decorated Christmas tree this morning.  I love the early morning quietness, the soft shiny lights on the tree, and my cups of coffee.  Time to think, to remember, and to pray.

Then I heard Aaron getting out of bed.

So the mood changes.  Now it’s time to think of how to deal with whatever mood he has; to remember to be understanding and patient; and to pray for that understanding and patience when I feel it slipping away.

Aaron was sick yesterday with a stomach virus.  He threw up multiple times, but by last night was doing well enough to keep down some applesauce; watch part of the latest movie in which he is totally engrossed; and play a game of Skip-Bo…..beating me, by the way, which made him feel even better.

As he came down the stairs and into the kitchen this morning, I asked him how he was feeling.

“Fine,” he flatly answered.  “Can I have my three cups of coffee now?”

He always includes the number of cups when he asks for his coffee, just in case Mom has forgotten the all-important fact that he always has and always will drink THREE cups of coffee in the morning. 

I then asked him if he wanted to sit for a few minutes by the Christmas tree with me…..and would he also want to drink a cup of coffee as we sat sweetly enjoying the tree.  He informed me, rather reluctantly, that he would sit by the tree but that he did NOT want a cup of coffee to drink there. 

“I want my three cups of coffee in my room,” he informed his ignorant Mom.  Doesn’t she know that coffee, THREE cups of coffee, is only to be gulped down in his room? 

We sat down on the couch, me with my cup of coffee and Aaron with his subtle exasperation that Mom would even suggest that he also have a cup of coffee by the tree.  He was quiet for a minute but of course it wasn’t long before he began with his usual, “Mom?”

I waited.  He says this so often, but he doesn’t really have a plan of what is to follow the familiar, “Mom?”  I waited some more.  “Mom?  Uh……”  So now he was trying to decide what to say, because all this business of sitting sweetly…..and quietly……by the Christmas tree is pretty strange. 

I would love to have heard Aaron say, “Mom?  Do you know why I act so hatefully sometimes at Paradigm?”  Having such a heart to heart with Aaron would have been the best gift ever for me! 

But instead, it was “Mom?  Have you seen pictures of Transformers Revenge of the Fallen on the internet?”  He didn’t even notice my resignation or how I tried to muster a little enthusiasm in order to act even remotely interested in Transformers Revenge of the Fallen.  I told him that I didn’t know if I had seen pictures of Transformers Revenge of the Fallen on the internet, because all of these games and these movies and these pictures just jumble together into one blob of sameness for me.  I didn’t tell him that part about a blob of sameness, though, for fear that he would want to talk about The Blob movie that he and I watched a few weeks ago.  That’s not what I wanted to remember on this morning beside the pretty Christmas tree.

Aaron then got up and went up the stairs, monkey style like he does, and soon returned with his Transformers Revenge of the Fallen guide book.  He knew just where to open it in order to show me Demolisher…..the bad guy, I found out after asking because that’s something else I can never remember…..and Bumble Bee and Optimus Prime…..both good guys…..who came in and saved the day.  Aaron was happy to be talking to Mom about these important matters.  He would not have been happy to talk to Mom about such unimportant matters as his behaviors and motives for such. 

 

Aaron has had some rough days at Paradigm in the last few weeks.  Not every day, but many days he exhibits anger and aggression there.  It’s like he becomes The Incredible Hulk when he walks in the door.  Gary and I try to get to the bottom of it, but to no avail.  He doesn’t act like that at home.  He has issues at home, certainly, but not to the extent seen at his day group.  It’s discouraging and embarrassing and very frustrating to Gary and me.  If only Aaron would talk about it on a heart level, but even Aaron doesn’t really know why he reacts the way he does.  These autism behaviors are like that.  Unexplainable…..spontaneous……disruptive……sometimes hurtful.

This past Monday, Aaron was in a mood when he woke up.  It was because of the bad day he had at Paradigm on the day before Thanksgiving.  That dark cloud was still hanging over his head.  We worked through his issues on Monday and he decided to go to Paradigm.  On the way there, he was very happy to stop with me at Wal-Mart.  I hoped that Aaron would let me pick something up there for him to eat for lunch at Paradigm, but for some reason Aaron usually refuses to take food to Paradigm.  When he told me that he was eating sandwiches offered to him by others, I became so frustrated.  I tried to reason with him, but he wouldn’t budge.  Finally, with a degree of humor, I told him that I wanted to just resign from my Mom position.  I was tired, so just give me the letter of resignation and let me sign it!

Aaron turned and looked at me, and then started laughing…..thankfully.  It was one of those moments when I wished I hadn’t said those words, even in jest, so I was thankful that he saw the humor. 

“You can’t resign from being my mom,” he slowly said.  “You’ll always be my mom.”

“Yes, Aaron, I’ll always be your mom,” I replied.  But some days…..

So last night, after he had been sick all day, I watched him getting his snake and frog and skunk positioned just right in his bed.  I watched him get his covers the way he wants them.  I watched him write down his time to bed in his bedtime log book.  I kept my distance.  No hugging because of germs, I told him.  He just stood and looked at me, then turned to get in bed with no usual goodnight hug. 

“Mom?  Are you gonna take care of me if I did throw up during the night?” he asked. 

There went the tug on my heart as I assured him that I would take care of him.

“So, like, if I throw up you’ll wash my face?” he hopefully asked.

Yes, dear Aaron.  I’ll wash your face.  I’ll look at pictures of Transformers Revenge of the Fallen.  I’ll see that you have THREE cups of coffee in your room.  I’ll see you through the rough days. 

And I’ll tear up those resignation papers.  Because I do love you, no matter what.  And I’ll always be Mom.