Category: Asperger’s Syndrome

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! 

 

Peace Among the Bumps

Today was the day for Aaron’s scheduled MRI, a test being done because of a change in his seizures and the additional worry of an annoying Parkinson’s-like tremor in his right hand.  Aaron, thankfully, has never minded medical tests or doctor visits of any kind, so today he woke up happy and ready to go to his appointment.  Of course, we all know that these appointments are just a side trip to Aaron.  The real purpose that he is going, in his mind, is our restaurant of choice for lunch, and the trip to Wal-Mart or some other fun store that also awaits.  Therefore, on this day, his brain MRI was a bump in the road on his way to his true destination.

He came in my bathroom to check on my hair and make-up progress.  He had showered, dressed, and enjoyed his coffee.  He knew that we would leave around 10:00, so he was trying to busy himself with a movie or a game in his room……until he remembered that Mom sometimes needs hurrying, no matter how many times she says that she does NOT need another hurry-up reminder.

As he stood there watching my progress…..or lack thereof, in his opinion……I told him that if it worked out, we would get his hair cut on the way to his MRI.  IF it worked out, I repeated…..and then I progressed through the usual disclaimer list.  IF I could get ready in time (which he seriously doubted)…..IF Aaron was ready (and he let me know that he was!)…….IF Great Clips wasn’t crowded. 

“I know, I know,” he exclaimed as he left the bathroom.  But in no time at all he was back again….standing there staring at me as I fixed my face, as if his staring could or would hurry me forward. 

Finally, as he turned to walk away, he said, “Tell me when you’re ready…..are you about ready?”  He barely took a breath between the statement and the question.  I laughed and told him, “NO!  I am NOT about ready!”…..and he knew it was time to leave Mom to her face, all by herself.

Finally, I WAS ready and so out the door we went.  I had checked Aaron in online and when we got there, he was taken right away to a booth.  Most of the girls there know Aaron by now.  He’s pretty unforgettable after one exposure, trust me.  As he sat down, he immediately launched into what movie he was currently watching.  Godzilla!!  Loud talk ensued about giant lizards and triceratops and saving the world and wanting to know if she had watched the new Godzilla yet.

 
She asked Aaron if he was ready for Christmas and he loudly replied, “MOM?  Are we?”  And I said we were close.  Then he told her that his brother and sister were coming over for Christmas.  She asked if they live far away, and he said that his sister lives in Texas and…..”MOM?  Where does Andrew live?”  So I answered, and was aware that everyone in Great Clips was learning a lot about us.  She asked him if his hair looked the way he wanted it.  “MOM?  Does it?”  Oh dear.

And then came her innocent question.  “So Aaron, what are you doing when you leave here?”

And very matter-of-factly he answered her.  “I’m going to the hospital to get an MRI.”

The words seemed to hang thick in the air.  He wasn’t talking Godzilla, or eating out, or shopping, or Christmas at that point.  I wondered if she was sorry she had asked him this question, but how could she have known?  And good old Aaron wasn’t the least bit fazed by his answer.  He told her he was getting an MRI as casually as he had told her that he was watching Godzilla. 

So I tried to not let my thoughts faze me, either.  My thoughts were how normal Aaron made it sound that he was going to the hospital for an MRI…..how casual he seemed about it…..because he really is casual about it.  He’s not worried or alarmed at all.  He’s not sad or embarrassed.  And I know I must not be either…..for his sake as well as my own.

Yes, I sat there wishing that Aaron could have answered her question on this day with nothing more than something normal and fun to be doing after his hair cut.  I’m going to a movie……or I’m going Christmas shopping……or I’m going out with my friends.  Yes, I was going to make sure that Aaron had some fun to look forward to today.  But first….the MRI.

The hair dresser told Aaron she hoped it went well, and as we checked out I made a comment about how the doctor was looking to see if Aaron had a brain.  Aaron laughed and everyone laughed, and we walked out the door with Aaron off on his next subject.

But on the drive to the hospital, my thoughts were back there at Great Clips and my heart was a little heavy.  Then there it was……playing on our Christmas CD…..Amy Grant singing “Silent Night.”  The song that somehow always reminds me of my dad and that always tugs at my heart was not the song I was sure I wanted to hear right then.  I blinked back tears.

            Silent Night, Holy Night

            All is calm, all is bright…..

Sometimes all is not calm.  Sometimes all is not bright. 

            Round yon virgin, mother and child.

            Holy infant so tender and mild……

But I knew then, as I have been greatly reminded over the past few days, that the coming of this holy infant Jesus makes everything in my heart calm and bright.  His coming makes everything right.  Not easy, but right and well.  Calm and bright, because of the hope that He gives.

            Sleep in heavenly peace,

            Sleep in heavenly peace.

Peace that only Jesus can give, because He did come on that silent and holy night long ago. 

 
And there on busy Kellogg Drive with traffic on both sides and Aaron chattering away happily beside me, I was seriously filled with peace.  We still had the MRI ahead; Aaron still has his special issues; life may still seem unfair to some.  But there is peace, more than I have sensed in a long time. 

I see, more than I believe I ever have, what the coming of Jesus means to me personally and to this world.  Peace in the midst of fear…..in the midst of pain…..in the midst of frustration.  Peace that’s unexplainable except as I look at that little infant Jesus. 

“Come on, Aaron!” I said as we got out of the car in the hospital parking lot.  Let’s get this bump-in-the-road over with and go have some real fun!   

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!

Birthday Weekend Highs and Lows

This past Saturday we celebrated Aaron’s birthday.  It was a big one, too, because Aaron turned 30 years old.  However, to Aaron it was a big birthday because every birthday of his is big in his book.  He had none of the qualms or sadness or excitement about turning 30 that most of us have……which is really good, I guess, because he doesn’t fret over age at all.  He frets over more important stuff, like are we sure we’re going to Texas Roadhouse and that Rosie can come and what time we’re leaving and can she come over to our house after dinner.  30 years old means nothing to him……supper and time with Rosie does. 

In fact, for months he and Rosie have talked about his birthday.  Every time I would see Rosie when Aaron was brought home from his group, she would ask me if she was going to get to come to Aaron’s birthday.  I think some of the other clients got tired of hearing about it, but Aaron and Rosie checked and double checked, over and over. 

A couple weeks before his big day, Aaron looked at the calendar and mentioned that his birthday was coming soon…..for real!  “Mom!” he exclaimed.  “At first it seemed like it was a long time for it to come!”  Now it was within sight, almost, and his excitement was building.  Aaron has never liked a ton of attention on that day, surprisingly enough.  He loves the food and the gifts, but he still doesn’t want singing or other attention focused solely on him.  He’s a mix of emotions around that day, for sure.

So I was surprised when he agreed for me to make cookies for him to take to his day group on Friday, the day before his birthday.  I offered, thinking he would say no, but instead he said yes…..and I was very happy.  It’s like having a child in grade school again.  I gave him cookie ideas, none of which greatly excited him……until I suggested M&M cookies.  He said a hearty yes to that idea, so last Thursday I made his M&M cookies.

He saw them cooling on the counter when he walked in the door that afternoon, but instead of sounding excited about them, he seemed a little hesitant.  I wondered if he would back out of taking cookies, not liking the thought of too much attention.  He barely looked at them when he walked by, so I pointed them out to Aaron with enthusiasm.  He flatly said, “It’s kind of crazy.”

“Oh, it’s not crazy to take cookies,” I told him.  “It’s a fun thing to do in honor of your birthday.”

“Well, what’s it mean to be in honor of your birthday?” he asked.

And I explained what it meant while he paced around the kitchen, acting almost scared of the cookies laying there.  I thought I gave a very concise, understandable explanation…..and then Aaron said, “But Friday is not my birthday.”

HaHaHa!!!  So typical Aaron!  Life should be in order, and celebrating his birthday the day BEFORE his birthday is very out of order.  Silly Mom, he seemed to be thinking…..but the next morning he did take the cookies and he shared them with his group.  Progress!

He didn’t know that I had planned tacos for our supper that night.  He had been wanting tacos for a while, so I thought that tacos would be a fun Friday night supper just before his birthday.  When he got home that afternoon, he grinned broadly when I reminded him that tomorrow was his birthday!  And before I could tell him about the tacos soon to come, he said, “Mom?  Can we have what I want for supper and not what you want?” 

I laughed and asked him what he would want.  He said tacos, and I loved the smile on his face when I told him that tacos was what I had planned.  His birthday eve was going well! 

The next morning, Gary and I both wished him a very happy birthday and he just replied, “Yeah,” as he walked away.  I made his usual apple pie that he loves, and he looked at it with very little visible excitement……but I know how Aaron’s mind works and I knew that he was taking mental notes of everything and enjoying it in his way.  The traditional birthday sign, the gifts and “30th” birthday balloon on the table, the apple pie…..all of it was important to Aaron, though he showed little outward joy about it all. 

We met Leroy and Louise, along with Rosie, at Texas Roadhouse…..but there was an hour wait, so we decided to go up to Outback.  Rosie rode in our van, she and Aaron sitting in the back, and talking the whole way.  No one minded changing restaurants and it worked out well.

After dinner, we headed to our house.  Rosie and Aaron rode with us again, talking as always.  It was a fun evening of pie and ice cream, Aaron opening gifts and cards, and plenty of talking again.  It was wonderful to see Aaron and Rosie enjoying their special friendship on this special day.  And Aaron loved having everyone go upstairs before they left so that he could show them his bedroom.  That’s what Aaron does!

 
 
 
Later that night, I told Aaron about all the many birthday greetings he had gotten on FB.  I told him that at that point he had 48 birthday wishes!  He smiled, and so I started reading some of the comments.  He patiently listened for a minute and then interrupted me to ask, “Are you going to mention all 48?”  I guess he had heard enough, so off he went to his room to examine his new birthday gifts and to unwind after a fun evening. 

The next morning, Sunday, he had a seizure at 4:30, and another one at 7:00.  Gary and I stayed close to him all day, and sure enough he had another seizure later that night while sitting in his desk chair.  He was fine and was able to get in bed after a while…..but as always, our emotions were mixed.

So happy he had a wonderful birthday……so thankful that he didn’t have a seizure day on his birthday……so sorry to see him seizing and then see the effects on his body and mind all day.  So thankful that he slept well last night and woke up being his perky self.

I saw a picture on Facebook this morning that said no matter what is going on, there is always, always something to be thankful for.  Being thankful is an exercise that all of us benefit from, and is certainly what God has told us to do. 

And thanks to each of you who love Aaron and wished him a Happy Birthday!!  Your love for Aaron blesses our hearts and encourages us more than you know. 

“Yeah,” as Aaron would say. 

 

 

A Time Change……And A Change of Time

Some of you may remember this post of mine from Facebook a few weeks ago:
          We need to change Aaron’s pick-up time for his day group from 10:30 to 9:30. We may as well have asked him to scale Mt. Everest in shorts and flip-flops…..go swimming in hot lava….play in a den of rattlesnakes…..sleep with a skunk…..walk on hot coals across America….. Get the picture? This could be a tiny bit difficult.
His new pick-up time was to begin this past Monday……right after setting our clocks back one hour on Saturday.  Oh boy!  A double whammy for poor old ‘I like things the same and I don’t like change and I like my clock to stay the same’ Aaron.  To say I was dreading it was an understatement.

I broke the news of the “fall back” time change to him on Saturday afternoon.  “Oh brother!” he said as he turned and went up to his room to ponder this complexity of life.  The extra hour of sleep meant nothing to Aaron.  Order in his world is all that matters, and this time change twice a year is full of disorder.  Not to mention all the changing of clocks!

He and I were playing SkipBo that evening.  We finished at 10:44, which was really 9:44 if the clocks had been set back……but was still 10:44 on most of our clocks because we hadn’t changed them.  Aaron, though, was already operating on the new time.  I found this out when I started putting the cards away and said I was ready to go to bed.

“If it’s 9:44 right now, maybe we should stay up now,” he said as he watched me put the cards in their box. 

“Why?” I asked. 

“Because it’s NOT 10:00!!” he not-too-patiently explained to me. 

“Well, it’s really 10:44 but in the new time it’s 9:44,” I began to explain. 

But nope, it was already a done deal to Aaron.  It was 9:44 now in his head, and he will not go to bed before 10:00…..new time, not old time.  Old time 11:00……new time 10:00.   9:44…..10:44……never mind.

 
The next day he realized that the digital clock by his desk had not been changed yet.  It’s a little difficult to set, so Aaron depends on me or Gary to do it. 

“Mom!” he said.  “The clock by my desk…..it hasn’t been changed behind yet.”   I hear that statement nearly every year, and it never gets old.  I would never think to describe our time change that way, but Aaron does.  Fall back……fall behind……he does remember.

Our other huge hurdle was to occur on Monday, when we would meet his group an hour earlier.  Another time change…..of a different sort…..but a change of time regardless.   UGH!!! 

Gary had suggested that something powerful might work to ease Aaron’s transition into this dreaded new pick-up time.  Something powerful….like sausage biscuits.  So on Sunday night I casually asked Aaron if he would like to leave early enough the next morning to run into Quik Trip to get a couple sausage biscuits.  He casually and quickly answered yes……and I nervously told him that we would need to leave around 9:10.  He didn’t bat an eye.  I relaxed…..just a little.

He was up early on Monday morning, and I realized that this weekend time change would possibly work to our benefit.  Aaron waking up earlier than normal was just what we needed with this new pick-up time.  Wow!!  Perfect timing for a time change after all!!

We had a few initial bumps that morning.  Some name calling…….almost yelling from Aaron…..a couple refusals.  But no throwing of anything breakable……no ripping up of special papers…….no bending his glasses.  And when I went in to tell him that it was nearly time to go, he was compliant.  Another wow!

We left the house without incident and got to QT in time to get his biscuits.  We waited…..and waited……and waited some more.  After a long wait and a few texts and calls, I learned that there was a miscommunication…..and that the new time would start the next day.  Aaron’s ride came, but we had waited an hour.  On most days, Aaron would have been beside himself…….frustrated, angry, tired.  But not that morning.  He was just fine as we sat there watching birds and listening to music and talking….of course.

And all this week, Aaron has been wonderful about the new time that he meets his group.  No anger or complaining or frustration……at all!!  This is truly a miracle.  I can only explain it as an answer to prayer, for I know that Gary and I were praying about it, and I know that many of you were praying, as well.

So thank you for the prayers……and thank the Lord for the timing of this huge change in time.  The clocks “changing behind,” as Aaron says, have been a blessing indeed!

The Bible verse that says our times are in His hands has taken on special meaning to me this week!

 

 

Stability

Now there’s a good, solid word for you……stability.  I believe that all of us crave stability even in the midst of changes in our lives.  Some changes are exciting……new friendships, marriage, a new job, a new house, new baby.  Yet even in the midst of these positive changes, we desire an inner stability….a steadiness in our lives at the core of our being.  If we find ourselves facing unhappy changes, then our inner stability can be threatened and we can become very unbalanced.

I remember losing my balance a couple years ago on our stairs in the middle of the night as I let our dog out to go potty.  I hung on for dear life as I rocketed down the stairs after losing my balance.  Our thick wooden door at the foot of the stairs was my stopping point, my shoulder slamming into it full force.  That instability resulted in major shoulder surgery with months of recovery and rehab, and still today I have a shoulder that will never be the same again. 

I know a lot of people facing instability in their personal lives today…..we all do.  I just heard last night about a dear 33 year old mother of four that I know who had a major stroke on Saturday.  I’ve had several conversations in this past week with parents who are terribly hurt and worried about wayward children.  We and our other neighbors are helping our little elderly neighbor, Nora, move to assisted living after losing her husband to cancer in May.  A year ago she never dreamed any of this would be happening.  Actually, none of us knows what a day will hold for us when we climb out of bed in the morning, do we?

These kinds of instability, and so many others, can rock our world.  We can be shaken to the very inner parts of ourselves.  But I also know that even when we are surrounded by so much instability, we can…..deep, deep in our souls…..have a constancy that never changes and is never shaken.  Of course, I’m referring to our relationship with God.  When you have a personal relationship with the One Who is always constant, then you know that you can lean on him when life becomes unbalanced, for He never shifts or changes. 

The first part of Isaiah 33:6 jumped out at me this morning:  “He shall be the stability of your times.”  I know this chapter is talking about the future, but I also know that we can apply this truth to our lives as believers right now, today, because it’s a truth about God that never changes.  What are your times?  What are my times?  What times are we each living in at this point in our lives?  Whatever it is….wherever we are…..if we know the Lord, He will be the stability of our times.

And I think of our Aaron, who in so many ways forces Gary and I to fall back onto the stability of God.  Aaron’s Epilepsy and autism are issues that we deal with every day of our lives…..and just when we think we’re somewhat coasting along in our version of normalcy with Aaron, something changes.  It could be a behavior or a health issue, but change is fairly certain to be constant with Aaron….if that makes sense. 

Gary and I were slapped in the face with this reality on Saturday night.  Aaron had one seizure during the night before, which is not at all unusual.  He has had seizures in his sleep for years after enduring all sorts of other seizures, day or night, during his young years and into puberty.   We have grown accustomed to rarely ever seeing a seizure when Aaron is awake…..except for one at the theater with his group in September and one at the YMCA a few weeks ago…..and then again Saturday night.

Gary and I were watching the World Series, and Aaron was sitting in Gary’s desk chair talking to us.   I looked down at my notebook on my lap, and in two seconds Gary called my name.  I looked up to see Aaron having a seizure, out of the blue and totally unexpected.  Gary was able to keep him from falling out of the chair, and when it was over and Aaron was a little lucid, we eased him onto the floor.

Aaron was conscious but he wasn’t with us.  His eyes were wide, his arms and hands kept lifting up awkwardly as if he was reaching for something, and he couldn’t speak.  He tried to speak, but all he could manage was a smile.  That was pretty heartbreaking.  Finally he was able to muster one word, with effort.  You can guess what it was.  “Mom?” he said.  I had to smile to keep from crying.  Aaron must say “Mom” at least a hundred times a day…..or so it seems…..so it was fitting that this was the first word he was able to say. 

We kept him with us while we watched the game.  I tickled his back, which he loves, while he recovered.  Soon he was talking again about aliens and wanting to go to his room to watch his alien movie, which we reluctantly let him do.  It’s just that we have this fear now…..that started a few weeks ago…..as we see him edging back into sudden daytime seizures while he’s up and around. 

On the next day, Sunday, we let him sleep.  He woke up too late for Gary and me to go to church, but we wouldn’t have left him alone anyway at that point.  We later took him with us to Sam’s, which he loved, and on the way home I told him that I would fix the Lasagna that he had been wanting.  That made him very happy.  I invited Nora over for lunch and to watch some football, not knowing if Aaron would be nice to her this time or not…..but he was perfectly nice and funny…..and we had a wonderful afternoon.  Of course, we had to endure watching some of Aaron’s Mountain Monster show that he was watching before we could change the channel to football. 

For the rest of the afternoon, after Aaron had gone back up to his room, he kept bounding down the stairs and coming into the family room to ask Nora some important questions.  Questions like:  Would you eat an alien egg?  Did you know that those aliens have concentradik (concentrated) acid in their blood?  Why is there a Queen alien?  Have you seen aliens hang from the ceiling?   Would you watch the movie, Alien?

With each question, Aaron would bend over and rub his hands together with delight…..and Nora would laugh and laugh.  He didn’t really care about the answers to his questions.  He just wanted to talk and to share his alien discoveries and to be the center of things…..which he is without even trying.

Later, he and I played Skip-Bo.  You would never have known he had such a strong and unexpected seizure the night before.  Life with Aaron has returned to normal.  Just now he came downstairs carrying a little dirty carrot from the bucket of garden produce that I haven’t yet washed.  He was so excited to hold that carrot and to ask questions about the carrot….and to let Jackson sniff it, of course.  Typical Aaron. 
 

 
We have the continuity…..the stability…..of who Aaron is mixed in now with that cloud of fear concerning his unexpected seizure activity.  Instability is at the back of our minds.  I know that’s to be expected because we love Aaron and we are concerned for him.  But I’m so thankful that we can lean on God when we feel ourselves getting unbalanced with worry, and know that He is “the stability of our times.”  None of these developments surprise Him.  He is here with us and here with Aaron. 

We all learn the deepest lessons in the hard times.  We test the solidness of God when the ground upon which we stand is uneven and giving way beneath us.  Whatever you’re going through, I hope that you have experienced the stability of God in the center of your pain.  He is there for you, constant and sure.  I pray that I remember this truth in whatever lies ahead as well.  

 

 

Where’s The Pumpkin?

Aaron went to the pumpkin patch today with his day group.  Every year that he has gone, he brings back a pumpkin that we place on our front porch.  Aaron’s always proud of his pumpkin patch pumpkin, and he loves seeing it sitting on our porch. 

Today he bounded in the door as always, jacket dragging on the floor.  He was full of things to tell me.  I got the first word in, though, as I quickly said hello and then asked him right away if he had enjoyed the pumpkin patch.  He said that it was OK, but he thought it was a little dumb.  That’s pretty typical Aaron.

He was more anxious to tell me something important, though, than to discuss anything else about the pumpkin patch.  “Mom,” he said in his urgent voice, with a sort of whisper sound thrown in.  I knew this was special, so I stopped what I was doing and I looked at him.

“Guess what I told Rosie today?” he asked. 

He waited, so I asked him to tell me what he told Rosie.

“I told Rosie that I love her,” he softly said.

We stood there, eye to eye for a few brief seconds, and then Aaron rubbed his hands together with delight and laughed a very happy laugh.

He then told me that Rosie gave him a hug.  And later he repeated the story to Andrea, with the same delight that he had conveyed it to me…..and to Gary, as well. 

Oh, after Aaron told me of his declaration to Rosie, I realized that he had not carried in a pumpkin.  I asked him where his pumpkin was.

“I gave my pumpkin to Rosie,” he happily said.  And off he went to his room.

Well now, isn’t that the way it is?  Mom is second fiddle now.  I may never get Aaron’s pumpkin patch pumpkin again.

And that’s the way it should be.