Category: Adult Autism

Snapshots of Aaron

Sometimes the hours and the days run together.  I think, “Oh, I’d love to share this about Aaron or that about Aaron,” but I run out of time or motivation, or the stories just don’t seem as funny or meaningful as they did when they first happened.  Often, if I don’t write the story soon after it happens, I feel like I lose my inspiration.  What was I trying to convey?  What did I hope to capture? 

So today I was looking at some pictures I had recently taken.  I decided that perhaps I would share a few of those pictures with you in order to just give a little update on life with Aaron.  A life colored by his unique outlook, which has partially developed because of how autism and seizures affect him, and also because of how his personality was shaped by God.

THE TULIPS

A friend came over for lunch last week, surprising me with a bouquet of tulips when I opened the front door.  When Aaron came home that afternoon, he was delighted to see something unusual on the kitchen table.  There were the purple tulips, in a vase of water, just ready for him to examine.  I immediately told him not to touch them, because Aaron loves to not only touch flowers and plants, but to also squeeze them to see if they are real.  Or he’ll pull the petals and leaves.  Therefore, I know to tell him up front to not pull….or squeeze…..or do any other tests for realness. 

 
The tulips wilted over the next few days, so I finally decided one evening that they were ready to throw away.  Aaron was very happy about this, because it meant that he could examine them more fully than he had previously been allowed.  He had fun rubbing the yellow pollen on his finger as we examined the stamens together.  He then pulled some of the petals off and laid them in a little pile.

“I want every petal on every plant!” he exclaimed as he started his petal pile.  But then he stopped and thought a moment as I offered to put the petals in a plastic bag for him.  “No,” he decided.  “They’ll just turn crispy.”  So he abandoned his petal idea as he left the kitchen. 

A couple days later, he was thinking about the missing tulips and he said, “Mom, what species are you going to get now?”  I told him that I probably wouldn’t replace the tulips.  He continued, “You need to get a different species!  Get roses!”  And I decided that Aaron has a great eye for flower species!

THE SOCKS

Everything in Aaron’s life is significant to him.  Even socks.  I don’t know why he sometimes thinks that he should wear a pair of socks more than one day.  I tell him repeatedly to always put his socks in the laundry every day, and then get a clean pair the next morning.  But every now and then he’ll ask, “Tomorrow, can I wear the ones I wore today?”  And I always tell him no. 

“I’m gonna save these,” he said one day.  Why does he act like he needs to preserve his socks?   He didn’t notice my deep sigh as I told him to go count his socks.

“I have four pair,” he reported after a few minutes.   I assured him that four pairs of socks would last four days, and that I would be doing laundry in order to provide him with clean socks…….LOTS of clean socks…….before the four days were up and the four pairs of socks were gone.  

The next day he came up to me and said very seriously, out of the blue, “Now I have three socks.”  That was just this past Sunday, so after church Gary and I ran to Sam’s.  I bought Aaron a package of ten……TEN…….new pairs of socks.  He was happy.  The pressure was off…..for both of us. 
 

But he wasn’t totally finished.  On Sunday night, before he went to bed, he asked, “Do you want me to wear one of those new socks tomorrow?”  Really, sometimes I feel like I’m going to develop a twitch like the Inspector did in the Pink Panther movies.

THE TIME

 
All of you know that Aaron loves EXACT times.  And he loves to do things, like eating lunch when he’s home, at EXACT times.  The other Saturday morning, he got up and came downstairs.  “Mom, I got up at 7:01.” 

“Did you, Aaron?” I asked.

“Yes,” he replied.  “But I decided not to come out of my room at 7:01 because I thought 7:01 was too early.”  He stood there staring at me.

“Should I have gotten up at 7:01?” he finally asked when I didn’t give him his desired response. 

I told him that it was fine to get up around 7:00.

“7:01,” he replied.

Whatever.  But I didn’t say that, because it’s very important to Aaron to be precise with time.  I just smiled and let him continue.

“I’m telling Dad I got up at 7:01,” he said as he headed for Gary’s study.  Yep, it’s that important.

THE EATING

Today Aaron stayed home because he had a seizure this morning……at 7:27.  Later, as he had recovered, I asked him if he wanted something to eat before he laid back down.  He looked at the clock, and I knew what was coming.  It wasn’t 12:00.

“Is it 12:00?” he asked.  Then he saw that it wasn’t 12:00. 

“No,” he continued.  “I don’t want to eat until 12:00.”

He woke up later, a little after 12:00, but that was still an allowed time for him to eat lunch because it wasn’t before 12:00.  AFTER 12:00 is allowed.   These things are important to know. 

He ate some pizza.  He often has a spoon with his pizza, and very often he will include the whole set of silverware…..knife, spoon, and fork.  Never mind that he doesn’t use the utensils.  He needs them there beside his plate. 
 

And the bowl, of course, in which he places his pepperoni to be eaten later.   I don’t know why he won’t eat the pepperoni with his pizza, but he rarely does that.  He places the pepperoni in the bowl, and then eats it last, when all the pizza is gone.

THE ANIMALS

I’ve also told you how much Aaron loves his stuffed snake and his stuffed skunk.  They must be in his bed every night, where he meticulously arranges them until they are just right. 

This morning, after Aaron’s seizure, I had to wash his bedding.  This time I also needed to wash his snake and skunk.  The skunk has seen better days.  He had a large rip on his head and he was missing some stuffing.  I mentioned throwing him away, but I could tell Aaron was bothered by that.  So I sewed up the dirty skunk, and then tossed him and Mr. Snake in the wash.  That’s why later we didn’t have snakes on a plane, but we had a snake and a skunk in the dryer.  They are clean now and ready to once again be oh-so-carefully placed into Aaron’s bed tonight. 
 

THE TOOTHPICKS

On our way to church this past Sunday, I climbed in the passenger seat of our van and closed the door.  When I reached for the handle, I saw them…..the toothpicks that Aaron had confiscated a few days earlier from Carlos O’Kelly’s.  Gary and I laughed when I held them up…..a reminder of Aaron and of Aaron’s ways.  He does love his toothpicks, like he loves his silverware that he often doesn’t even use.

 
That’s how it is with Aaron.  We see his marks all around us in the ways that he lives his life.  It seems no matter where we turn, we are reminded of Aaron and of his special ways.  We may laugh, or roll our eyes, or bite our tongues, or sigh deeply, but there’s no getting away from all the ways that Aaron leaves his mark on our lives and in our hearts. 

And we are richer for it. 

 

 

  

 

I Love This Day

Aaron had an appointment this afternoon with his Epilepsy doctor, and as always on doctor days, he and I went out to eat lunch.  Aaron loves these lunch dates, not necessarily because of the company but because of the FOOD.  But maybe I’m wrong about that, because when we pulled into the parking lot of Carlos O’Kelly’s and were taking off our seat belts, Aaron said, “I love this day.”  That made me smile a huge smile as I asked Aaron why he loves this day.  “I love this day with you,” he said. 

So OK, my heart was sufficiently melted and I was surprised I could walk into the restaurant.  Yet Aaron was already leading the way, so I had no choice but to follow.  He beat me into the entrance and was already rolling the little toothpick dispenser around as he gathered up three or four toothpicks…..while the greeters greeted him and Aaron ignored them.  The girl who ushered us to our booth smiled broadly, though, and I could tell that she understood and liked Aaron.  We moms of special children just know.   Aaron was oblivious of any of this.  He was just happy to have had the time to get several toothpicks before picky Mom made him stop……and I wondered if he still loved this day with me.

We sat down, and before our understanding greeter could hand us our menus, Aaron was already telling her that he wanted water.  Except he always asks if he can have water, as if he needs permission.  She and I both told him at the same time that our server would bring water, but Aaron was already opening his menu.  He needs lots of time to try to match what he wants to eat with the pictures that are shown.  Our greeter also handed us a special menu that was for items that would only be available for the next week.  She told us that this menu was for us to keep along with the two regular menus.

Our pleasant server introduced himself as Aaron quickly asked him if he could have water, and soon Aaron and I were looking at our menus.  Our water came, but no straws…..and straws are a staple to Aaron.  Our server immediately realized his mistake, apologized, and hurried off to bring us straws.  “He’s clumsy,” Aaron said.   “He forgot our straws!”  I was thankful that Aaron didn’t repeat this to our server when he returned to take our order.  I handed him our menus when we were through placing our orders, but I forgot the special menu laying off to the side.  He asked for it as well, and after I gave it to him, Aaron said that he thought that this menu was ours to take home.  I realized then that Aaron had pushed it to the side in order to hide it.

“Why did you think it was ours to take home?” I asked. 

“Because that girl told us to keep it,” Aaron patiently replied. 

As so often happens, statements that often slip right past me certainly don’t slip past Aaron.  Literal Aaron.

We munched on chips and salsa, and when Aaron’s salad came he dug right in to that…..only pausing to grab another chip or two here and there because he didn’t want me to eat them all.  He always keeps a close eye on the chip bowl when we eat at Carlos O’Kelly’s.  Soon our meals came, and when the plates were in front of us I took a bite of my enchilada.  Aaron looked at me eye to eye and said, “Are we gonna pray?”  He held his hand across the table for me to hold as we always do…..and my heart melted again.  How could I forget to ask the blessing?  But Aaron remembered….and I’m almost glad that I forgot because it showed me that Aaron remembers!  He remembers these important lessons…even when silly Mom doesn’t!

Aaron watched the servers as we ate, and he listened as I thanked our server for filling Aaron’s glass with water or bringing us extra napkins.  “We’re nice to the staff, right?” he asked.  I agreed that we should be nice to the staff…..the servers.  “It’s hard to be staff,” Aaron continued.  He knows that sometimes people aren’t kind to servers and this bothers him.  I remembered the last time that we ate here.  One of the servers dropped a napkin, and Aaron looked at her.  “Hey!” he said.  “You spilled your napkin.”  It was funny and sweet, and I was glad that she laughed and that she thanked Aaron for pointing out her napkin that spilled.  

Soon we saw a group of servers singing Happy Birthday to a diner.  Aaron, who doesn’t like having Happy Birthday sung to him….or to anyone, really…..did not care for this display of silliness.  “Oh my word!” he said.  “Tell those people to shut up.  We’re trying to eat!”  So much for being kind!  I was very thankful that we had an end booth, and that for once Aaron spoke rather softly.

As we finished eating, our server asked if we would like dessert.  I declined, saying that we were full, but Aaron didn’t want to let that idea slip away.   Dessert sounded very good to him today.  “Why didn’t you order dessert?” he asked.  I told him that we didn’t need dessert, and besides, we were full.  He wasn’t convinced, I could tell.

“Are you full?” I asked him. 

“Yes,” he truthfully answered, before thinking of the consequences of admitting fullness.

He recovered quickly.  “I mean, not TOTALLY full,” he explained.

I laughed….and still said that I did not want dessert.

“But I mean dessert, just for me,” he countered.

Good try, Aaron, but it’s still a no.  So we got up from our booth.  I headed one way and Aaron headed the other, so I turned to head him off, wondering what he was doing.  Aaron saw our server and I saw what Aaron was doing. 

“BYE!” Aaron said as he waved.  It was another sweet moment, and I was so thankful that our server…..our staff, as Aaron says…..told Aaron goodbye. 

I like Aaron to walk in front of me when possible in interesting places like restaurants.  That’s so I can intercept him when he stops to stare at someone’s food….or pulls the leaves of the plants…..or stops to feel the texture on the walls…..or any number of other unique behaviors.  Like how he stopped today to feel a fake cactus on our way out, and comment loudly about its fakeness. 

Of course, he immediately stopped at the faithful toothpick dispenser as we passed it before leaving.  Out came two more toothpicks as he turned the knob.  Our understanding greeter just smiled and I was relieved. 

I had told Aaron earlier that we were having chicken for supper.  As we left the restaurant, I asked him why he got more toothpicks. 

“They’re for the chicken tonight,” he flatly answered. 

Of course.  I should have known that.   

We had to interrupt our fun by going to the doctor and talking about adding a new medicine….and taking away another medicine……and doing a sleep study…..and discussing Aaron’s hand tremor….

But Aaron also had the doctor laughing about how the Rocketeer looks like a grasshopper in his mask…..and how the holes in the ceiling of the exam room were made by paper needles……and many other comments that only Aaron makes.

He had me standing in the corner of the elevator as we left the Epilepsy Center so that I could feel what he feels from that vantage point as the elevator went down.  It was just the two of us in the elevator, but I knew that if there were others in there, Aaron would still have insisted that I stand in the corner so that I could enjoy what he enjoys.  He bent over and rubbed his hands together in great delight, and we exited the elevator laughing and talking about what we felt.

We went into Best Buy on the way home, and Aaron immediately stopped at the entrance to ask the employee there if they had the Beauty and The Beast DVD….and I so resented how that guy looked at Aaron as if he was a Martian.  He needs to ride in an elevator with Aaron, I thought.  He needs to look at life through Aaron’s eyes instead of looking at Aaron through his uncaring eyes.  He has no idea what he’s missing.

Hey, Aaron!  Guess what?  I love this day!  And you know why?

Because I love this day with you. 

 

DO Sweat the Small Stuff!

Aaron seems to have almost fully recovered from his no good, very bad seizure episodes that began on Thursday night and went into early Saturday morning.  This was a tough round for Aaron, taking a huge toll on him physically and mentally.  He slept and slept…..he’s been very slow in both mind and body…..and he hasn’t wanted to eat much.  Not eating much is a sure sign that he isn’t himself.  He also developed a sore throat that didn’t help, and of course his bitten tongue has made eating difficult.  Yesterday, on Sunday, we saw more of the old Aaron return….and it was a welcome sight, even when he was trying to feed the dog. 

On Saturday he finally woke up “for real” around 12:45, meaning that he was more alert and more able to really talk to us.  It was around lunch time….although we know lunch time to Aaron is as close to 12:00 sharp as he can make it……but I offered to heat him some potato soup anyway.  I had made the soup the day before…..the day of his terrible seizures…..but all that day he hadn’t been able to eat a thing.  I hoped he could enjoy his favorite soup on Saturday, so I heated him a bowl.  He couldn’t eat it, though, stopping after managing only a couple spoons full.  I put it back in the frig, and he hasn’t touched it since. 

Something else unusual is that he offered to take a shower without being prompted.  He actually wanted to shower, so as soon as he was steadier we let him get cleaned up.  Later, he and I went on a walk around the yard with Jackson.  It was good for Aaron to get some fresh air on that beautiful, warm January day.  Then we soon got in the van and drove up to check out the car wash, which was still too crowded, so we went on down to the Little Caesar’s pizza shop.  He and I waited in the drive-through line, and soon I looked over and asked Aaron if he wanted some bread sticks.  I rarely let Aaron have bread sticks, though he always wants them.  He just doesn’t need the extra calories when he’s going to eat so much pizza.  He was very surprised when it was ME who brought up bread sticks.

“Yeah!!” he responded when I asked him if he wanted them.  His eyes brightened and he was very happy…..and I was happy, too.  What a little thing that meant a LOT to Aaron.  And to me, if anyone deserved some bread sticks at this moment, it was Aaron.

Once at home, he only barely managed to eat one piece of pizza and one bread stick.  Normally, he would have tried to wrangle that whole pizza down his throat, plus all the bread sticks.  Honestly!  But not on Saturday, when he was still recovering, and also fighting that sore throat and damaged tongue.

Aaron continued to recover yesterday, gaining his strength and his spunk.  His appetite still wasn’t back to normal, but he was talking more and managing the stairs more easily.  He began to watch his Indiana Jones movies that he had started last week…..and we knew he was feeling more like himself when he started talking to us about them as well.  I know that Gary and I will soon tire of his repetitious talk about these movies, but I also know that we will relish having old Aaron back with us.  Remind me I said that in a day or two when my brain is numb from his constant talking.

I stood in Aaron’s room on Friday night, when he was still so affected by the seizures, and I watched him get ready for bed.  I helped him get the covers on his bed just right according to Aaron standards, and then I stepped back as he finished his routine.  He was slow and unsteady, but nothing was going to stop him from getting his room exactly perfect. 

He carefully pulled back his covers, and every bit as carefully placed his stuffed snake in his bed.  He made sure that Mr. Snake was very straight, with just enough of his head on the pillow.  Then Aaron took his old stuffed skunk and placed him right beside Mr. Snake, just so-so.  The skunk’s little tail was arranged correctly, along with his paws and his head.  Aaron didn’t speak a word, working slowly with purpose……and slowly because of the seizure effects.  He pulled the covers up when he was finished, letting Mr. Snake’s snout still show, but totally covering the little skunk.

Then Aaron smoothed out any wrinkles that he had made in his covers before he headed around the bed to pull back the covers on his side.  He got his long pillow situated just the way he likes it, pulled over to just a certain point that only Aaron knows.  He made sure that his nightstand items were still where they were supposed to be, in the right place and order.  Then he picked up his notebook in which he writes the times that he gets up in the mornings and the times that he goes to bed at night.  He had to write in the time for that morning since it was blank because of his seizures.  I watched him write 8:17 A.M., although I knew that was not the correct time that he got out of bed.  I wouldn’t tell him that, though, not for anything.  Then he wrote down his going to bed time and carefully closed his notebook, placing it back in the floor with the pen on top, just right. 

 
He still had his glasses on, so I asked him if he wanted me to put them on his bookshelf for him.  He agreed as he slowly took them off, handing them to me.  “Put them by my watch,” he instructed me as I turned to lay them on the top shelf.  So I did as I was told, and I laughed inwardly as Aaron leaned around to examine my placement.  I hoped it was correct…..and it was….so Aaron was finally, I hoped, ready to actually get in his bed for the night.

I got his covers pulled up close around him the way he loves, and we talked for a minute before I turned his lamp off.  But just as I was shutting his door, as he so often does, I heard him say, “Mom?”  So I opened the door and said, “Yes?”  And he paused before I heard, “Mom?  Is it almost 10:00?” 

“Yes, Aaron, it’s almost 10:00,” I assured him.  You see, Aaron can barely tolerate going to bed before 10:00.  So just as his snake and his skunk and his covers and his pillow and his nightstand and his going-to-bed and his getting-up times and his glasses beside his watch and his covers pulled up…..ALL had to be JUST right…..so did his actual time to bed.  Or at least as close to right as possible.  He had to ask, even though his clock was there beside him on his nightstand right where it was supposed to be.  I guess he just had to hear Mom confirm to him that it was near enough to 10:00 to go to sleep.  The world would still turn, even though it wasn’t exactly 10:00….or later.  So I closed the door and Aaron quickly fell asleep.

Aaron doesn’t act like his seizures greatly concern him.  If they do, he doesn’t say much about it.  He has wished that he didn’t have seizures and that he didn’t need to take pills, but he doesn’t seem to get depressed or sad about it.  He manages to push on ahead despite the pain and the side effects that the seizures cause.  But don’t mess with his bedtime routine!  Don’t ask him, if he has any cognizance at all, to go to bed with his two stuffed animals out of place or his covers wrinkled or his glasses not beside his watch or his time not written in his notebook.  That would be disastrous!

These facts are some of what is so amazing about autism, and about Aaron.   I guess, in the long run, it helps Gary and I handle the stresses of Aaron’s situation a little easier.  We talked about Aaron’s bedtime routine that night, and we laughed…..when there hadn’t been much to laugh about that day, for sure.  We laughed because Aaron is truly unique, and his being unique is often a cause for us to smile and even laugh. 

I can’t take away Aaron’s seizures, but I can usually accommodate his desire for order and routine in his world.  My world, and Gary’s world, may be anything but orderly in the process…..but that’s OK. 

And one more thing.  You know the saying, “Don’t sweat the small stuff?”  With Aaron it’s just the opposite.  He DOES sweat the small stuff, and seems to let the big stuff roll off his back.  Sometimes that’s very freeing when we stop to consider that the big stuff in Aaron’s life is at times really serious.  It helps get our minds off our sadness and fear as we are pulled by Aaron into focusing on stuffed snakes and wrinkled bed covers.

Leave it to Aaron to pull us into his world, and to get our minds off of our other worries……with a stuffed snake, no less!     

 

 

Laughter, Fussing, and Frowning

Aaron came into the kitchen early this morning, before Gary left for work, and the very first words out of his mouth…..the. very. first. ……..were, “Mom, so you’re saying that War of the Worlds was an old movie?  It was an old movie that had been made before?”  It was as if he was continuing a conversation that we had left three minutes ago, instead of nine hours ago, when he was going to bed.  I had to chuckle, which was better than crying.  You see, all weekend Gary and I endured endless discussions about War of the Worlds…..and Terminator.  Take your pick.  We were completely saturated with both movies, to the point that several times during the weekend we had to tell Aaron, “Enough!”  No more talking of these movies for the foreseeable future…..which wasn’t nearly long enough, in Aaron’s book……and so we would soon find ourselves once again immersed in movie discussions. 

Thankfully, Aaron moved right on to his next topic of interest.  “Mom, I woke up at 5:00!!”  Of course, I asked him why as he stood there staring at me waiting for me to ask him why….and he continued.  “The covers on the right side of my bed were not normal.  They were not like the covers on the left side.”  He again stared at me as he waited for yet another response, so I gave him another response by asking him why the covers were not normal and he gladly answered.  “The covers on the right side were ALL the way out!!  The covers on the left weren’t all the way out.”  So this is what I heard on the monitor at 5:00 this morning.  Aaron cannot tolerate abnormal covers on his bed, so he was up and about re-adjusting the covers so that the right matched the left.  And I laughed at Aaron’s description of his early morning effort to normalize his bed, and he was quite proud that he had made mom laugh, though he didn’t understand…..or care to understand….why.

Soon Gary was down, putting on his coat to leave for work, and Aaron immediately launched into his War of the Worlds observation.  Gary was still saturated by two and half days of movie talk, so he answered Aaron’s question that he had just asked with a little humor……which Aaron did not appreciate.  Aaron knew we were tired of movie talk, and he interpreted Gary’s humor as being insulting…..and so Aaron in turn insulted Gary……and we in turn fussed at Aaron…..and our day was off and running in typical fashion.  Laughing one second…..frowning and fussing the next. 

These ups and downs are true for all parents.  It seems more exaggerated with Aaron, at least to us, because of his age and his persistence.  He is not easily deterred from the paths of conversation that he sets out on, or the paths of behaviors.  We so wish we could detour him from some of the things he says and the actions he takes.  I wish this every time I read another incident report from Paradigm, where Aaron has taken the path of anger and rudeness.  He gets in so much trouble when he is trying to “tease” someone, or when something or someone sets him off. 

But then he can be so hilarious sometimes, and so endearing.  This weekend, he was very exhausting with all his movie talk…..following us around the house as he talked, or finding us downstairs watching football.  But then he would come out with something that made us laugh.  Like the football games, which he observes in his unique Aaron way:

          “So who are you guys voting for?”

          “Does the team you’re voting for have the most points?”

          “Does that football player have a pacifier in his mouth!!?”  (It was the

          mouth guard.  HaHaHa!!!)

          “I bet the man who taught the Carolina Panthers is not very happy that they only
          have 17!”
 
His humorous comments were like a breath of fresh air…..a wonderful break from War of the Worlds or Terminator.  When Aaron and I played Skip-Bo last night, I had to once again forbid any further movie talk.  We listened to Disney music on Pandora, and Aaron had fun trying to guess what movie the songs were from.  He would cock his head to the side in deep thought, and I knew he was re-living those old movies.  I enjoyed his reactions, and I relished another movie reprieve.  We had two games of peace, and then the second it was all over, he launched into more movie talk.  NO!!!!

We went to McDonalds for lunch yesterday, and again urged him to think of other things to talk about.  He was mostly quiet as he ate all of his burger first, and then tackled his French fries.  He will only eat one food item at a time.  He methodically ate every French fry, one at a time, by dipping them slowly in his very, very full ketchup cup and then taking a bite……dipping slowly again and taking a bite…..over and over.  At least it kept him busy and not talking about movies.  And then he spied a little girl looking at him and he stared back.  I was nervous.  Would he stick out his tongue or be nice?  We never know.  But he smiled at her and then said, “I was smiling towards the little kid.”  I was relieved at his sweetness, wishing it could always be the case with Aaron.

Last night as we watched the Broncos losing the football game, we heard Aaron’s loud thumping down the stairs.  Gary and I both commented about it, how soon it was that Aaron had just been downstairs to talk more about movies and here he was coming down again.  It’s wearying, really.  Aaron bounded in the room and stood between our chairs, looking down at me as I sat there looking up at him…..waiting with dread for his latest movie verbal digest once again.  But this time, Aaron wanted to hand me his nearly empty bag of Skittles…..the bag that he had been eating out of all weekend.  In the bottom of the bag were several remaining Skittles.

“Here!” Aaron said as he held the bad toward me.  “You can have the rest of these, Mom.”  I thanked him but told him that I really didn’t want them right now, and that he should eat the last Skittles.

“No!” he insisted.  “I want you to have them.”  And with that, he put his hand in the bag and dug out the few remaining candies.  He put his hand toward me and I held my hand out, receiving his gift.  I really don’t enjoy eating something that Aaron has fingered as much as he had those Skittles…..because I just don’t know where Aaron’s hands and fingers have been, honestly.  But God has blessed me with a strong immune system, so I took the Skittles, hiding from Aaron my hesitation. 

I laid them on the table beside me, and Aaron picked up a couple of the orange ones because they look green to his color blind eyes…..and he wanted to show Gary the new green apple ones……but he realized they were orange, so he put them back in my little pile.  More handling, I thought.  But while he stood there watching me, I picked them up and ate them.  This made Aaron happy.  He wanted to share with me his special candy, and he knows that Gary doesn’t eat candy, so I was the recipient of every single Skittles…..germs and all.

And today I’m alive to tell about it.  I don’t even have a sniffle or an upset stomach.  But I have the memory of Aaron’s sweet sharing.  He shares with us in so many ways, in many different colors and flavors, his life and his take on it.  Like I said earlier, we can be laughing one minute, and then frowning and fussing the next.  There are so many ways we wish that we could change our big, loud, rough Aaron.  But then there are many ways that we wouldn’t change a thing about our kind, sharing, funny Aaron. 

Yet he comes as a package, as all children do, and we know that we have to love all of him.  We DO love all of him.  We cherish the positive and we work on the negative.  We ask God for wisdom, and we ask others for forgiveness or understanding when they are affected by Aaron’s behaviors.  We share life with Aaron, usually Aaron’s way.

Laughter, fussing, frowning…..germs and all.  It’s worth every part….every color.

Love Rules!

Here we are.  It’s the third day of our new year.  The third day of new beginnings, so I’m told, and new attitudes…..new challenges and new goals……new everything.  But I have our washing machine running this morning and it’s reminding me that the sameness of life also continues despite my desire to work up some enthusiasm for newness.  Aaron had a seizure last night and so once again I am washing his bedding from the mattress pad up to the top layer…..his favorite cheetah blanket, or whatever animal it represents.  I’m not complaining at all.  It’s our life and I’m thankful that I’m here to be a part of it, and to care for Aaron.  It’s certainly not new.

Aaron doesn’t care for new, unless it’s a new video or a new bag of candy.  He doesn’t like new routines or new schedules, and he doesn’t like the people or the holidays that cause a disruption to his sameness.  On Thanksgiving Day, Aaron came into the kitchen while I was preparing our meal.  He asked when we would be eating.  I told him it would probably be around 2:00.  He stared at me for a few seconds and then said, “That’s why I was thinking if I could eat lunch.”  I didn’t have to look at the clock to know that it was nearly 12:00 and to Aaron, 12:00 means lunch……Thanksgiving Day or not.  He did agree to wait for his meal, but he did give remaining in his routine his best effort as well.

We try not to give in to Aaron’s routine oriented way of viewing the world when there are special days or events to consider.  We give it our best effort in order to include Aaron in our family traditions and our special times together.  Yet we know that at times it’s not only difficult but nearly impossible for Aaron to comfortably enter into our celebrations together as a family.  The complexities of his autistic world, at times, will simply not allow him to move beyond a certain point.  There are several reasons for this dilemma that he…..and we……face during the holidays.

One reason revolves around conversation.  Aaron doesn’t understand and is rarely able to enter into the normal ebb and flow of family conversation.  Andrea and Andrew both came home for Christmas on Christmas Eve.  We sat around the table and talked that evening, and all of us noticed Aaron.  He had moved to one end of the table.  His eyes darted back and forth between us as we talked.  We were catching up with Andrea and Andrew……their lives…….their jobs……their friends.   Soon Aaron would loudly interject with his “Hey!!”  And we would all look to him as we gave him an opening to talk, but he often didn’t quite know what to do with this opportunity to enter into our flow of talk.  So he would pause and then he would continue.  “Uh…..well…..did you know that my favorite character on Phantom of the Opera is the Phantom?!” 

His comment didn’t fit at all into what the rest of us were discussing, but we’re used to this with Aaron, so we all commented in some way.  We really tried to act as interested in what he was saying as we did with the rest of our conversation, but sometimes it’s hard.  And if you give Aaron an inch, he’ll take a few dozen miles and he’ll talk until the rest of us are…….honestly……..bored beyond words.  So after we all responded to Aaron, we would pick up our conversation where we had left off and once again Aaron would sit there with darting eyes and bated breath, waiting for his next opportunity.  “Hey!!”  And we waited.  “Uh…..well……did you know that there’s a Queen alien?  Is she bigger than the other aliens?  Why do you think there’s a Queen alien?”  So then it’s our turn to say, “Uh….well…..we didn’t know that, Aaron.”  Come on.  Show interest……show enthusiasm for Queen aliens and for Phantoms and for whatever else Aaron chooses to talk about, we’re all telling ourselves. 

Another reason that Aaron gets stuck during the holidays in his point of no return is the change in his routine.  Everything is messed up.  His meal times……watching Wheel of Fortune with Mom…..bedtime rituals, especially if Mom doesn’t come right away to say goodnight……playing SkipBo……..having his bathroom to himself……and so much more.  His brain is soon on overload, no matter how Gary and I try to maintain his sense of normalcy. 

The third reason for Aaron’s holiday struggles……and probably the straw that breaks the camel’s back……is having to share his time and space with others.  Aaron has gotten used to being the only “child” at home now.  He is doing better with having Andrea and Andrew come for visits…..probably because he knows he can talk and talk to someone other than Mom and Dad.  We weren’t sure how he would react to Megan, Andrew’s girlfriend, being here again this year.  Megan arrived the day after Christmas.  I was a little nervous, but I greatly relaxed as we all stood in the kitchen chatting and I noticed that Aaron was happily talking.  Soon I had him tell Megan about his movie of the moment…..Phantom of the Opera……which fortunately is one of Megan’s favorites.  Aaron loved feeling included as all eyes focused on him, and he really enjoyed our interest in hearing him sing his favorite Phantom of the Opera song.  He’s hilarious when he sings and we all laughed with him as he relished being the star.

 
And then I goofed.  Aaron had returned to his room, so I asked Andrew to go up and tell Aaron that it was time to eat.  There are reasons that this wasn’t a good idea, but suffice it to say that Aaron from that point forward began to do down the path of frustration and anger.  He wanted me to come get him for dinner, for one thing, and though we roll our eyes at that, it was this important to Aaron.  His nearly overloaded system was beginning to crack under the holiday strain.  He was rude to Andrew during lunch and we knew then that we were facing an uphill battle.  When we later opened presents from Megan, Aaron sat with his back to Megan and Andrew.  He was edgy still. 

Then off we went to walk through Botanica and see the Christmas lights.  It was cold and we all bundled up, and piled in the van……including Aaron.  I let him have his favorite, normal passenger seat, beside Gary.  And wonderful Gary walked beside Aaron and kept defusing him the whole way through Botanica.  You can see in the pictures that Aaron is NOT seen.  When he’s in this frame of mind, you can forget pictures.  They only make him angrier.  We were way down that frustration path at this point.

 
 
We got home and I was hurriedly taking off my coat, getting ready to set out all the snack foods to enjoy while we played our Christmas games.  Aaron knew he was welcome to stay downstairs and play the games with us, but Aaron detests this part of Christmas.  He doesn’t like the silliness and the loud laughter…..at all!  And in the mood he was already in, we knew he wouldn’t want to stay.  So as I removed my coat, Aaron turned to me and loudly said, “Mom, I wish Andrea and Andrew and Megan would just leave, and that I could have things normal again!”

Embarrassing, yes…….especially because Megan is still new to all this and we so wanted her to feel welcome.  Thankfully she’s kind and understanding.  You must be in these situations with Aaron.  But Aaron’s comment was also telling as he revealed, in his blunt way, that he wanted his normal life back.  The night went downhill from there, if that was possible.  The five of us totally enjoyed the games, but we were often interrupted by Aaron’s heavy footsteps on the stairs and the floor as he came down to check things out.  He really wanted to enter in, I believe, but he didn’t know how to comfortably do that.  At one point, he looked at the container full of wrapped Bingo gifts and he softly asked if he could have one.  That made us sad.  Of course, we let him unwrap one and he was happy to get a Wal-Mart gift card.  Then off he went to stew in his anger some more.

 
Aaron and I eventually ended up in my bedroom, where he talked angrily about how we only love Andrea and Andrew, and only want to talk to them….and to Megan.  He cried for a long time, a sure sign of deep frustration.  My heart hurt for him as I tried to comfort and assure him of our love.  I really believe that Aaron senses a difference in how we talk…..our inflections and our words……when we talk to him compared to the others.  Try as we might, we can’t manufacture the same interest in his comments compared to theirs.    Aaron is perceptive……so perceptive. 

I also know that he needs repercussions for poor behavior, so I took the movie away that Andrew got him for Christmas, as well as the lap desk from Megan.  Finally Aaron came downstairs, face and eyes red from crying, and he gave a semi-apology to them.  I helped him into bed, but it wasn’t long before we heard him coming back downstairs.  He walked into the room where we sat, tensely waiting for another outburst.  But in his hand he carried his Ghostbusters movie, which he thrust toward Andrew.  “Hey Andrew!” he enthusiastically said.  “Have you seen this movie?”  And Andrew, with equal enthusiasm, said that he had and then he said, “Who you gonna call?”  Aaron laughed and took the movie back upstairs…..and we knew that his crisis was over and all was well once again.

The next morning, Aaron wanted to give some of his crescent rolls to Megan and Andrew for breakfast.  And when they left for a couple days, and returned to see us again, Aaron was fine with that.  I wish this scenario wouldn’t be repeated next year, but I’m realistic enough……we all are…..to know that it very well might be.  I returned Aaron’s movie and lap desk from Andrew and Megan to him, hoping that he understood the consequences of poor behavior and the reward of good behavior.  We always hope that Aaron will understand and that things will click in his brain, but his brain isn’t like ours at all.

 
So we do our best to understand Aaron, and to love him in all his unique and often frustrating ways.  Like Andrea said to Megan on the night I was upstairs with Aaron, as they cleaned the kitchen…..”So now you see what it’s like to be a part of our family.”

Yes, it’s not easy to be a part of this family sometimes.  Sometimes I think…..AUTISM RULES.   But then I realize that only one thing really rules.  LOVE RULES!!  We don’t necessarily love autism, but we all love Aaron.  We seek to understand autism, and therefore better understand Aaron.  I see growth in all of us that has occurred over the years.  It’s the growth based on our experiences with Aaron, and growth based on knowing that Aaron may improve in some areas, but he will never be totally like the rest of us. 

We may feel beat up and tired and angry ourselves, but we must remember that love rules over all.  God’s love for all of us, and our love for each other and for Aaron, will remain firm during these rough spells.  There’s nothing new about that, even in this new year. 

What a long post!  I have laundry to put in the dryer, and much more to wash.

With love. 
 

 

 

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.

 

Exodus: They Didn’t Do It the Right Way!

Aaron has been very excited over the past few weeks to see the movie trailers for the new Moses movie – Exodus: Gods and Kings.  The movie meets several important criteria in order to stir Aaron’s interest:  Loud…..large…..loaded with exciting scenes……for starters.  Now, we’ve told Aaron over the years that most movies based on the Bible are not accurate.  He thinks, then, that we mean those movies are bad.  So we’ve had long discussions……..looooonnngg discussions……with him over this issue.  We have told him that we just need to be discerning and wise, and don’t take the movie as being totally true.  Just pay attention to the details.

Well, Aaron did just that this past Friday when his day group went to see the new Exodus movie.   He charged through the door at the end of his day, finding me right there nearby as I folded some laundry. 

“MOM!!” he yelled as if I was way out in the back yard instead of just a few feet away.  “We went to see Exodus:  Gods and Kings!!” 

 
And with that, he bent over and began rubbing his hands together rapidly…..a true sign of great excitement.  And I asked a silly question.  I asked Aaron if he liked the movie.  Duh.

“YES!!” he yelled again, his hands producing great friction at this point. 

And then he paused, and his hands became still.  I continued folding laundry as I waited for the next shoe to drop……although Aaron would think I was weird for saying that because he was not holding a pair of shoes.  Literal Aaron, you know.

So in a much softer voice, Aaron continued.  “Well, that movie wasn’t all the way right.”  I asked how it wasn’t right.  “Well,” he said….(he likes using the word ‘well’ ), “it just didn’t always do things the way the Bible says.”

When I asked for an example, he became more animated as he said, “Well, in the burning bush in the movie, God was a little child.  The Bible doesn’t say that God showed up as a little child.”

I agreed with his assessment about the burning bush, and we talked about how God spoke out of the burning bush.

Aaron continued.  “And Aaron didn’t act rude like he did in the Bible!”

Rude?  So my Aaron explained, “You know how Aaron acted rude when Moses came down from the mountain?”

Oh yes, rude……as in building the golden calf?

“Yes!!” Aaron……my Aaron……agreed.  He said the movie didn’t show Aaron being rude.  In fact, my Aaron said that the Bible Aaron wasn’t even in the Exodus movie.   I don’t know…..I haven’t seen the movie.  I only know what Aaron said……my Aaron. 

Later, at supper, Andrea called and right away Aaron just had to tell her about the movie he saw.  It wasn’t long before Andrea, Gary, and I were all in stitches as Aaron told her about the Exodus movie and how wrong it was.  “ANDREA!!  GOD WASN’T A BUSH!!”  And on and on he went, rubbing his hands together now because our laughter was egging him on.  He was really getting into all this Biblical inaccuracy stuff!

Later, after the phone call, he continued.  “Guess what?” he asked.  “When Moses came down from the mountain with the commandments, he only had ONE tablet, not TWO!!”

So I checked the book of Exodus, and lo and behold…..the Bible does say that Moses had TWO tablets.  Way to go, Aaron……my Aaron.

“And you know what else?” he went on.  “There were only EIGHT commandments in the movie!!”

“How do you know there were only eight?” I foolishly asked.

“Because I COUNTED them!!” he replied.

Of course he counted them.  That’s exactly what Aaron…..my Aaron…..would be doing as he sat there stuffing popcorn….and maybe the napkins…..into his mouth.  He would definitely be counting the ten commandments that were missing two.

Well, as my Aaron would say, we had many a discussion for the rest of Friday and for most of Saturday about the Exodus movie…..the burning bush…..how God spoke……the plagues…..the fact that Moses was happy when the Bible said he was angry…..

Oh, and how wrong the movie was about the Red Sea coming back together because Moses was still in the water and had to swim to land.  “Moses didn’t SWIM in the Bible in the Red Sea!!!” he exclaimed.

I think that Aaron has processed the movie to his mind’s content now.  Maybe.  And I am amazed at how much of the Biblical story he remembered, and remembered correctly.  That’s the most exciting part to Gary and to me. 

Aaron….my Aaron…..said it very well on Saturday when he ended it all (maybe) by talking about Hollywood. 

“They were doing their own way to a movie!” he surmised.

And I totally agree with Aaron’s wisdom! 

 

This is The Day……

This morning I read about the death of one of my most remembered college professors……Martha Grace Green.  Tiny little Mrs. Green was a powerhouse as she taught speech to hundreds of students over the years.  We quickly learned not to underestimate her due to her size, for behind that small stature was a take-charge woman who taught us the proper way to give a speech……and to speak – (NEVER say each and every!!!)…….and also to live.  For at the beginning of each and every class…..so sorry, Mrs. Green!…….the entire class recited Psalm 118:24.  “This is the day which the Lord has made; we shall rejoice and be glad in it.” 

Many memories of Martha Grace were coursing through my mind this morning as I went about my routine, getting ready to drive Aaron to meet his day group.  I wasn’t at all surprised to hear Aaron knock on my locked bedroom door as soon as I got out of the shower.  Aaron often stands outside my bedroom door when it’s locked, knocking and waiting on me to let him in.  He will sometimes stand out in the hall for many minutes, as he did this morning, while he waits for me to open the door. 

When I finally opened the door this morning, there stood Aaron, holding onto the two sides of the hallway wall with both hands, arms outstretched.  “Mom,” he said.  “I’m dizzy!”  He then proceeded to walk inside my bedroom to follow me as I got ready to dry my hair.  However, he was having a very difficult time staying upright.  He was more than a little dizzy.  He was flat out very dizzy, leaning to one side and then the next as he tried to steady himself.  He held on to my dresser and then to the bathroom door as he followed me. 

I knew right away what this severe dizziness was.  His Epilepsy doctor recently increased one of his seizure drugs, a new one that Aaron has been on for a couple months.  The doctor had told me that the most common side effect is dizziness.  I had hoped that we wouldn’t see anything of significance with Aaron, but my hopes were dashed as I watched Aaron try to walk back to his room…….looking like a drunken sailor. 

I made sure he was safely in his room, sitting at his desk watching a movie, and I returned to my bathroom to dry my hair.  As soon as I finished, I heard Aaron again.  This time I looked and found him crawling up the hall.  Yes, he was crawling up the hall and into my bathroom like a baby on all fours.  Poor Aaron!  It made me so sad to see him like that.  He lay on my bathroom floor, wondering why he was dizzy.  He listened to me explain about the side effect of the increased dose of his new seizure drug.  He was satisfied that he was experiencing a side effect……relieved that it wasn’t his movie that was making him dizzy. 

 
Eventually Aaron crawled back up the hall and into his bedroom, where I helped him into his bed.  “I wish I didn’t take that pills,” he said.  “I just wish I could take my other pills.”  My heart hurt for Aaron.  He dozed a little and I hoped that he would sleep off the dizziness and return to normal when he was awake.  I knew that he couldn’t go to his day group like this, so I notified them that Aaron would be staying home.  I called his doctor to report the situation and to see what he wanted Aaron to do.  And as I finished getting myself ready, I was mentally rearranging my day.  At this time of year especially, but really every day, I have my routine figured out for each day.  I know what I will do when I drop Aaron off to meet his group……what I will do first, second, third, etc.  I try to make the wisest use of my time as well as the wisest way to save gas as I plan what to do when.  What will I do today because I can’t do it tomorrow……because tomorrow is also planned out……and the day after that…..

The side effects of Aaron’s medicine today that showed up in his body also showed up in my schedule, and in my planning, and in my LIFE.  Which brought me to the point of remembering Mrs. Green and then inwardly smiling as I made myself quote her life verse once again.  “This is the day which the Lord has made; we shall rejoice and be glad in it.” 

I shall rejoice and be glad in it, I told myself.   A little change in my routine is no big deal.  I can readjust, reschedule, rethink, and be just fine.  Some days it isn’t so easy, granted, but today I can…..and I will……and I really have to…..just stop and be glad in it.  So as I put away mounds of folded laundry that I had set aside for too long……and cleaned both bathrooms……and talked to Aaron when he stirred…..I kept repeating Psalm 118:24.  I kept telling myself to heed its message…..to not complain or sigh…..but to rejoice and be glad in it. 

IN it…..no way around it or under it or over it.  IN the situation I was to rejoice.  And that included poor Aaron going to the bathroom after I had thoroughly cleaned his toilet and the floor……and finding myself on my hands and knees cleaning up an even bigger mess, with dear Aaron telling me he was sorry.  Dizziness and going to the bathroom when you’re a man don’t mix very well. 

Aaron is better now.  The doctor’s office called with new dosage instructions.  The bathroom is clean again.  Aaron even got some Sonic for lunch! 

I am better, too.  Better for having learned years ago a most valuable lesson from Martha Grace Green.  She had no idea…..or maybe she did……of the many ways that her many students would use that life verse in our own lives.  I certainly never dreamed that I would be helping my 30 year old special needs son crawl up the hall to his bed on the morning I learned of Mrs. Green’s death……and had her life verse repeating in my head over and over, giving me great encouragement.  I never imagined that this would be my life when I was a young college girl sitting in Mrs. Green’s speech class.

But Martha Grace had lived enough life to know that all of her students needed to have one thing ingrained in our heads when we left her class.  God has made each of our days to be what they are, and we are to rejoice and be glad in each and every one.  Sorry again, Mrs. Green!

“This is the day which the Lord has made; I shall rejoice and be glad in it.” 

Thank you, Mrs. Green.  Somehow you knew.

Martha Grace Green with her son, Steve
 
 

 

The Phantom of the……What?

Aaron likes music of various sorts and is tolerant of most of my musical choices.  We all have our favorites when it comes to the music that we enjoy and Aaron is no different.  The one form of music that he probably enjoys the least is opera.  I don’t listen to opera, honestly, though I do appreciate it.  To Aaron, though, even Handel’s Messiah is opera.  I love The Messiah, especially at Christmas…….and inevitably when I have it playing, Aaron will walk in, raise his eyebrows, give me “that” face, and say something about Mom liking opera.

When The Phantom of the Opera movie hit theaters several years ago, it quickly became a favorite to me and Andrea.  I have the CD, and so a couple weeks ago I decided to play it in the van while driving Aaron to his group.  He had heard it before, a long time ago, but this time he was very fascinated with it.  So fascinated, in fact, that he decided to start looking The Phantom of the Opera up on the internet…..meaning he was looking at YouTube trailers and talking about this movie….a lot!  It didn’t matter to him that it had the word “opera” in it…..or that some of the singing was rather operatic.  He was becoming hooked on the story and had tons of questions.

I was in Target one day when I saw The Phantom of the Opera DVD on sale for only $5.00.  I bought one and later that day showed it to Aaron, to his great delight.  Now he could actually watch the real movie instead of just watching the movie clips.  And hopefully have all of his questions answered instead of clomping down the stairs to find me, with yet another query about The Phantom of the Opera. 

 
For awhile, though, he still watched the movie clips and still asked me many questions……until one day I looked him in the eye and profoundly said, “JUST WATCH THE MOVIE!!” 

“Oh yeah,” he said…..and back up the stairs he went to his room to actually WATCH THE MOVIE!!

Before long, I heard Aaron returning down the stairs.  “Mom!” he exclaimed.  “The Phantom of the Menace is singing to Christine about ‘my power over you!!’ What does he mean?!”

“Wait, Aaron,” I said.  “The Phantom of the What?”

“The Phantom of the Menace is singing to Christine about his power over her.  And he called her his sleepy angel!”  With that, Aaron doubled over and furiously rubbed his hands together in delight.  He was really getting into this.

“Aaron, it’s The Phantom of the OPERA,” I corrected him.

“Oh yeah,” he said as he hurried back upstairs……and I stood there knowing that Aaron was enthralled by the fact that this Phantom of the Whatever said that he had power over Christine.  Forget opera……forget singing……forget the love story…..   We’re talking POWER here!!!

Aaron was hooked.

Later, he came into the kitchen to find me.  “Mom!  Text Andrea to tell her!”

“Tell her what, Aaron?” I asked.

“Tell her that I like The Phantom of the Menace.  Put it this way…..” 

Opera, Aaron.  The Phantom of the Opera.

So I texted Andrea to tell her that Aaron liked The Phantom of the Opera.

And on another occasion…..”Mom!  Did you tell Andrew that I like The Phantom of the Menace?”

Opera, Aaron.

Soon Aaron realized that there was more going on in The Phantom of the Opera than underground tunnels and organ music and POWER.  He was catching on to the fact that there was a love story involved.  He knew that Christine had two men who loved her.

“Mom, the other guy that likes Christine is greedy of her!” 

Well…..kind of……but not really greedy…..it’s just that……

Sigh.  You try to explain it as Aaron stands there rubbing his hands together and then says, “Mom, The Phantom of the Menace is my favorite character!”

Opera, Aaron.

He wanted to know where the movie took place.  “Mom, I noticed they say things in Paris words!”

He wanted to know why the Phantom wore a mask.  “Mom, it’s funny that The Phantom of the Menace wears a mask.  I thought he could have done skin surgery!”

Opera, Aaron.

And I was not going to explain skin surgery availability at this point.  Aaron’s attention to every detail was taking all the fun out of the movie…..except for him.  To Aaron, that IS the fun of a movie!!  Every single solitary miniscule detail must be discussed until Gary and I are thoroughly sick of it!  And I used to love The Phantom of the Menace.

Opera.

“Mom!  I noticed that The Phantom of the Menace is trying to kidnap Christine in chapter 8!”

Oh great.  Now he’s even into what CHAPTER contains every single solitary miniscule detail.

Opera, Aaron.

And perhaps Aaron’s most astute observation:  “Mom, I noticed that movie is about singing.”

Opera, Aaron.  It does involve some singing.

And I had to smile……smile at how intriguing every movie and every event is to Aaron.  How he processes all that he sees and hears, down to every single solitary miniscule detail.  He doesn’t miss a thing.  He even said that some of the songs in The Phantom of the Menace…..Opera…..made him cry.  Wow!

So yesterday at his yearly BASIS meeting at Paradigm, we sat there with a new person doing his assessment.  She was easy going and so Aaron relaxed.  He started talking about movies, of course.  And I reminded him to tell her of his new favorite movie.  Aaron just looked blankly at me, so I quietly prompted him.

“Phantom of the….”

“Menace!” he said.

Opera, Aaron. 

She had no idea why I laughed.

Movie Day With Rosie

A few days before Aaron’s birthday, he and I sat across from each other at our kitchen table.  He was excitedly telling me of all that he hoped would happen on his birthday…..dinner at Texas Roadhouse and then over to our house for apple pie and ice cream…..and most important, Rosie would be coming…..right, Mom?  Then he asked me if Rosie could bring her favorite movie to our house for her and Aaron to watch after they ate pie and ice cream, and after he opened his presents. 

He was so hopeful about that scenario.  I just looked at this man of mine that is still in many ways a child, and I felt a huge lump forming in my throat.  I tried to swallow it away, but the lump was also in my heart and that’s not so easy to swallow or wish away.  Sometimes I’m slapped in the face with the reality that Aaron wants to have a normal life where he makes his own decisions about things like time with Rosie.  Yet he must always involve his parents, because he needs our permission and he needs us to drive and he needs us to accompany him and he needs us to pay for things.  How would I handle a life like that?  And how do we parents handle our adult children’s desires for a normal life?  Those thoughts and emotions were swirling in my head as I heard Aaron ask again if I thought he and Rosie could watch a movie that night of his birthday.

As it turned out, they did not get to watch a movie because the night was getting late.  He and Rosie seemed fine with that.  Aaron was full of talk when they left, worried that Rosie didn’t have fun because she was afraid that our big dog would come upstairs……happy that she got to ride with him in our van to Outback and to our house……happy that Rosie’s mom and dad came, and that they all went upstairs to see his room.  So childlike, yet with adult desires, as well.

So it was wonderful when Louise called me the next day, and together we planned to take Aaron and Rosie to see the new movie “Big Hero 6.”  Aaron and Rosie anticipated it all week, talking and talking about it.  Aaron had already seen the movie and he knew that Rosie would like it.  And he was just very happy to actually be going to the theater again with Rosie, something that he has missed so much since she started going to another day group. 

Aaron and I met Rosie and Louise at the theater.  There came Rosie, clutching several crayons in her hand and carrying her coloring book.   As soon as we were seated in the theater, Rosie proceeded to open her coloring book and color away.  Aaron turned to me and started his usual talking, so finally I told him he should talk to Rosie…..and he immediately turned to Rosie and talked while she colored.  Then before I knew it he was talking to me…..and I reminded him to talk to Rosie…..and this scene was repeated several times until the movie started.

Aaron reached down to get his popcorn when he was satisfied that it was the right time to do that, which must be when the movie starts.  I nearly laughed when he held it far away from me in order to be sure that Rosie got first choice of a fist full of popcorn.  Louise brought a hamburger to Rosie then, so I took that time to grab some popcorn……but soon Rosie and Aaron were sharing the bucket of kernels again, and I just enjoyed watching their sweet routine that they know all too well from several years of sharing popcorn together. 

There sat Louise on one end, beside Rosie……and me on the other end, beside Aaron……with our two “kids” between us.  It was like we were chaperones.  It was fun and dear and sweet.  Of course, Aaron laughed too loud and too often, so I did my usual patting of his leg and whispering for him to be quiet.  Rosie seemed oblivious to Aaron’s loud laughter.  I’m sure she’s completely used to Aaron’s ways.

After the movie, as we walked through one of the lobbies, Aaron and Rosie agreed to let Louise take their picture beside Big Hero 6 himself……or sort of.  They show their happiness in this picture……adults standing there with a child’s delight.  That could also describe me and Louise as well as we laughed, and then as we walked out of the theater together, chattering and laughing in the cold. 
 
It was a good day……a sweet day.  I’m glad that we took the time to let our kids enjoy this movie day together.  Sometimes making these events happen can be a sacrifice of our time as a parent, especially us older parents who look around and realize that most parents our age are well beyond these years……or are doing these things with grandchildren.  Yet there are so many harder things we could be forced to do for our special needs children, and I know that we are surely blessed. 

Blessed, too, to be able to provide a way and a time and a place for our two special ones to enjoy part of a normal life together, participating in an activity that most other friends take for granted.  Aaron and Rosie have no idea of the way their happiness helps our mother hearts to feel soothed.  That sad lump in my heart was not an issue yesterday.  It was replaced by laughter and by joy as I  watched Aaron and Rosie have fun doing something totally normal. 

How do we parents of special needs children handle our adult children’s desires for a normal life?  Well, in this case, with a simple movie and some popcorn. 

Simply perfect!