SURRENDER

Have you ever found yourself in a place in your life where you never thought you would be found?  Sometimes it’s very dramatic, such as receiving an overnight medical diagnosis or facing the sudden death of someone you love.  Other times it’s a slow occurrence of situations that pile up but yet inevitably bring you to that place………that place you never imagined yourself having to face.  Many times, no one except our family or closest friends even know that we are in that place.  Their prayers and their love are invaluable, yes, but still we may feel alone.
 
Over the past five years, I have faced the loss of some things that I love.  As I talked to a good friend last night, the word that came to me was the word “adrift.”  I feel, and many of our friends feel, adrift……….not certain of where we will land……….trying to find our moorings…….just hanging on some days.

This morning, as I have been reading and studying the book of Matthew, I found myself in chapter 26.  Reading this scripture, and then the Gospel of Matthew expositional commentary by James Montgomery Boice, challenged and blessed me in the way that I truly needed today.  Sandwiched between two terrible acts of betrayal………the plotting of the chief priest and elders against Jesus, as well as the treachery of Judas…………is the tender story of Mary and her sacrificial love for Jesus.

This Mary is the sister of Martha and Lazarus, and is the one who was always sitting at Jesus’ feet.  She sat at Jesus’ feet and got to know Him as she listened to Him and talked to Him and worshipped Him.  Here she was, not far away from the time that she would watch her Master die a brutal death, and for one last time she approached Jesus with her final gift.  John and Mark also tell us that Mary broke the vial that she was carrying and out of it she poured a very expensive perfume, or oil, on Jesus’ head and then on His feet. Mary understood even more than the disciples about what was to soon take place.  She gave this most important gift of hers to Jesus as an expression of her love for Him, and of thankfulness for His gift soon to be hers as He would die on the cross for her sins.

I’m sure that Mary shared the same uncertainty and fear that the disciples felt.  Their world was about to crumble.  Jesus was going to die.  He kept repeating that fact to all of them.  On one hand they had the corrupt, conniving chief priests and elders……and on the other hand, there was the thief Judas betraying their Lord for a mere few pieces of silver.  Christ’s followers were surrounded by hopelessness and evil from individuals, religious leaders, and the government.  In the midst of it all, Mary gave Jesus all that she had as an evidence to Him of her complete trust and devotion.  She didn’t ask for answers or reasons or direction or blessing.  She just broke her vial and gave all to Jesus.

So my thoughts today have been of the past few years and of how many parts of my life Jesus has whittled away while I’ve inwardly tried to hold on tight.  Even some seemingly good things…….some productive parts of my life………have been taken away.  I don’t necessarily understand it or like it or even approve of it.  But in it all, I know that Jesus wants me to sit at His feet and learn from Him.  He wants me to trust Him totally.  He wants me to break that vial that holds my valued treasures and pour them out for Him……….to be willing to let them go in an act of worship and obedience.  Without answers or reasons………just trust.

My tears may mingle with the perfume that I pour on Jesus’ feet, much as I imagine that Mary’s did, but the sweet smell of that sacrifice will bring honor to God and will bring peace to my heart.

All to Jesus I surrender;
All to Him I freely give;
I will ever love and trust Him,
In His presence daily live.

All to Jesus I surrender;
Humbly at His feet I bow.
Worldly pleasures all forsaken;
Take me, Jesus, take me now. 

Get Lost

I wondered how Aaron would do this morning with having to get up to go to his day group after three fun days off.  On his days off he was up early, in the shower without having to be told, and very happy first thing in the morning.  I dreaded what this morning would hold as he faced reality.  Aaron likes his day group, but if given the choice I do believe that he would stay home every day.

It didn’t help that Aaron had two seizures during the night.  I was surprised, therefore, to hear him get up on his own this morning and go to the bathroom.  However, he went back to his room and shut his door – which is not a good sign at all.  He was either feeling bad from the effects of the seizures, or he just didn’t want to leave the house.   I waited for awhile until it was finally time for him to really start getting out of bed and getting ready.

I softly knocked on his bedroom door, and then I opened it and stepped inside.   He was all snug under his multiple covers…………and he did not want to be bothered.  I spoke to him, and then left.  I repeated this action several times until I finally got a reaction from him.  “Leave me alone,” he muttered.  And so it went for a few more tries.  I decided not to say anything about his seizures that he never remembers.  I knew he would latch onto that as a reason to stay home.
 
I became a little more insistent as I continued to go in his room and tell him to get up.  I also tried to interest him in his coffee that was cooling downstairs in the mugs he likes, and also in the applesauce that I thought he would want.  Finally, as I turned once again to walk out of his room, he perked up and asked, “Mom?  Did you see what was on my door?”  And as I looked up on his door, there on his Star Wars poster was a pink post-it note on which Aaron had scrawled a note to Mom.  He has done this before, but his notes rarely say the same thing.  I peered up at the note and saw what he had written.

Get lost.  I just shook my head and smiled as Aaron watched me and tried to gauge my reaction.  He laughed then.  He was quite proud of himself and also thought that his little note was funny.  I walked up the hall as I said, “Very funny, Aaron.  Now I’m getting lost and I want you to get up!”

Oh, if Aaron only knew how many times I’ve wanted to do just that……..to get lost.  Saturday evening was one of those times.  Aaron’s heart was set on watching Wheel of Fortune with me.  I thought I had enough time to do just a little ironing before Aaron’s favorite game show came on, but I wasn’t quite finished when I went in to Aaron’s room and told him to go on down and turn the TV on.  He set aside what he was doing, and went downstairs…….only to find that I wasn’t there.  “Mom?  Mom?  MOM!!”  he yelled.  He barreled upstairs to find me finishing up a shirt I was ironing.  One little shirt.  But Aaron was very unhappy that I wasn’t downstairs getting ready to watch Wheel of Fortune with him.  I told him that I would be down in just a minute, but to Aaron this was totally unacceptable.  He quickly escalated into yelling……..and I was not in the mood for this behavior on this day that had previously been so pleasant. 

I then did the thing that never, ever works.  I yelled back.  But Aaron cannot be outdone in these battles………a fact that I know but that I disregarded in my complete frustration.  No more details are needed, but I will say that I just totally lost my temper.  For those of you who might see me as the most patient parent on planet earth………..your bubble has just been popped.  I can get angry with the best………..or the worst……….of them. 

I’m not proud of this incident and have even wondered if I should write about it.  But I want to be honest as I portray life with an autistic adult child.  I am imperfect.  I get tired and frustrated and angry.  Sometimes other concerns are weighing me down.  When Aaron has a breakdown over something so selfish as me not being there to watch Wheel of Fortune at the moment he wanted me to be there, then I just might cross that line that leads to my own breakdown. 

I took a little time to remove myself from Aaron and from the situation.  Talking to Gary helped, as did getting some fresh air and collecting my thoughts.  I also asked God to forgive me, as well as Aaron.  But Aaron is so matter-of-fact about an argument.  He can resume his life as if nothing even happened, while I am in an emotional heap.  I was fighting guilt while he just wanted to know if we could play Skip-Bo later or tickle our backs.  I wish I could pick up, dust off, and move on as quickly as Aaron can. 

I know this is part of life that any parent faces.  A parent of a child, adult or not, with special needs must also balance figuring out what it causing the emotional outburst of their child with trying to maintain some calm and discipline…………..for themselves as well as for their child.  Sometimes it’s just too much, especially when our minds are tired or overwhelmed with other issues as well.  I know not to let the guilt of my lack of control be something that I allow Satan to use in order to discourage me.  I accept God’s forgiveness, even as I know I must forgive myself and close that chapter.

Get lost, Aaron wrote this morning.  Ah, if only life was that simple!  When Aaron starts escalating into anger, I wish I could hold up a Get Lost sign that either would apply to him…….or would allow ME to get lost until he calms down.  But I can’t do that, so I buck up and deal with it………with God’s help and with lessons learned from years of experience. 

I’ll just leave Aaron’s Get Lost sign on his door for awhile to remind me that it’s best not to lose the lessons we learn and the growth we experience as we travel this journey together.  

Sleeping in a Wrong Direction

Aaron got up early on Saturday morning, headed straight to the shower……which is surprising…….and then came slowly downstairs to find me in the kitchen.  I told him good morning and he immediately answered, “My back is sore.”  I smile, not because Aaron’s back is sore but because he rarely returns our greetings in the appropriate way.  This morning his sore back is of utmost importance to him, so therefore he thinks that it should also be of utmost importance to Mom.

I assured Aaron that I was sorry about his back, which prompted him to continue.  “I was sleeping in a wrong direction……..kind of bent,” he said.  I expressed more concern, and he added, “I wasn’t in a normal kind of sleeping way.”  As he got ready to eat some cereal, we talked about why we don’t always lay in a normal kind of sleeping way and that this sometimes causes a bent back, and then a sore back.  Aaron wanted an answer to this dilemma, and he also wanted to talk it to death.  Typical Aaron. 

We later went outside, where Aaron relaxed in the mulch with his coffee and his mulch trash can.  I sat nearby on the porch glider, wondering how Aaron’s back felt as he sat there all bent over…………. but I was not wanting to bring up his back issues again.  He talked and talked about many other things as we drank our coffee, and as I wondered what the people in the passing cars were thinking about this grown young man hunched over under the tree in the mulch.   Aaron does make us a rather unique family, for sure.


When Aaron finally stood up from under the tree, he was a little stiff.  This reminded him of his aching back, so he said, “My back is sore.  I should not have slept bent.”  Here we go again, I thought.  I knew that Aaron was going to discuss his bent, sore back all day.  Later, when he decided to lay down for a quick nap, he told me that he was going to try not to sleep bent.  And then when he woke up, he was happy that he had slept in a straight way and not a bent way.

We went to Wal-Mart soon after his nap, and as we were in front of the store………….in the crosswalk, of course……….Aaron was continuing his sore, bent back story and decided right then and there to demonstrate just what he meant by sleeping bent.  “You know, Mom…..I was sleeping like this!”   And I looked over to see him bent sideways in the middle of the crosswalk, as if he was doing side bends for an exercise class.  I wondered if someone watching on the security camera was either laughing or sitting up straighter as they tried to figure out what this unusual young man was doing in the middle of the cross walk………..not to mention what all the people milling around thought.   Oh well.  I just walked on as I told Aaron to quit bending and to come in the store.  I’m pretty much a pro at this embarrassing business.

Yesterday morning Aaron got up and came downstairs once again.  “Mom!  Finally I slept straight!”    Yay, Aaron!  But he wasn’t totally cured, I found out, as he continued by telling me that his back still hurt some.  He launched right in to what it means to sleep straight as opposed to sleeping bent…………and why we sometimes sleep bent………..and how to make sure we sleep straight…………and why sleeping bent produces sore backs.   Every little detail of sleeping straight and sleeping bent had to be gone over and over with Aaron. 

He ended by saying, “I can’t make my back go away from hurting!”  I laughed and I assured him that with time his back would indeed go away from hurting.  It’s hard to tell with Aaron how much of this constant talk is a ploy for attention, and how much is just his usual way of talking about every issue of his life until there could not possibly be another word to say……….but with Aaron there are always more words to say, even if he’s already said them many times.  He took me seriously in home school as I told my kids that repetition is the key to learning.  Man, did he ever!

I can happily say that this morning I dared to ask him how his back was feeling.  He answered by saying that it felt better today.  It took him a few seconds to answer and I was holding my breath.  I think that perhaps we have moved beyond his bent back and that it has finally gone away from hurting.

I’m waiting for the next issue that he wants to talk about and to demonstrate.  I just hope it’s not in the middle of the Wal-Mart cross walk!

No Electricity??!!

This past Sunday was a pretty stressful day around here.  I’m not talking about the huge storm that moved into Wichita…….or the tornadoes that were just to the south of us…….or the hail…..or the sideways rain……….or the fierce winds.  I’m talking about spending this delightful day with Aaron – and no electricity for about 7 hours.  When his precious weekend schedule is disrupted, no matter the reason, then regimented Aaron can……and did……become most unhappy. 

Gary and I were watching the weather.  We knew that there was rotation in the huge clouds that were all around us.  When the tornado sirens started blaring, I went up to Aaron’s room and told him that it was time for us to head all the way downstairs to the basement.  Aaron resisted this at first because he was playing a computer game, but he finally walked into the kitchen carrying his supplies for our stay in the basement.  He was carrying his soft, black, fuzzy pillow; his favorite blanket; his two current favorite DVDs; and his watch, dangling from his fingers and for some reason not on his arm.  He was wearing his shoes and socks, so that was good.  Just before we headed down the stairs, the electricity went off.  This was the real storm threat to us in the long run, but we thought that surely the power would be back on soon and so we were not alarmed. 

Our basement is finished, with carpeting and couches – and lights and a nice television that we couldn’t use because of the lack of electricity.  Gary and I ventured upstairs a few times to check on how the storm was progressing, but Aaron stayed where he was.  He pet Jackson for awhile, and listened to the hail and the wind…….and talked a lot, of course.  Finally he put his fuzzy pillow on the couch, laid down and placed his blanket on himself, and went fast asleep.  Everything was going nicely, I thought.  Silly me.

The storm had calmed down and was nearly over when Gary and I went upstairs to look out once again.  I soon woke Aaron up, and he gathered all of his belongings together before thumping up the stairs.  It only took him a few seconds to realize that the electricity was still off.  He put his pillow and blanket and DVDs back up in his room, and checked the time on his watch that was now on his arm.  Then he asked when the electricity would be turned back on…….and of course we didn’t know for sure.

For awhile, everything was fine and happy.  We looked out the windows as we surveyed for possible damage.  The sun came out, and we walked out on the driveway to look around.  Then I decided to do a few things that I could do without electricity.  Aaron followed me around as I folded some sheets, got Andrew’s bed ready for his arrival in a couple days, put away some laundry, and worked on a grocery list.  Aaron was talking and talking as usual, but soon his voice took on a different tone.  Electricity deprivation was setting in.  We were in trouble.

Aaron has just a set way of doing things.  His world functions the way that Aaron wants it to function, day after day.  We suggested that Aaron sit down and read a book.  But no……..Aaron will ONLY read his Handy Answer Books at night before bed.  At no other time will he read a book.  Believe me, we have tried to encourage reading at other times of the day or night.  But in Aaron’s world, reading is for just before bed……….propped up in his bed with his pillows around him in just the right order, along with his faithful back scratcher placed just so-so……and maybe a snack hidden from Mom under his covers.  Reading is not for the daytime with the sun shining and while sitting on a couch.  That’s crazy!  And Mom and Dad are crazy for even suggesting such a thing!

We also knew that Aaron would not go out to “do the mulch,” as he says.  He likes to sit out in or by some of our flower beds, or under our trees, and then break little pieces of mulch into his special mulch trash can.  But when the mulch is wet, as it was on this day, it won’t break like he wants it to and so he will NOT “do the mulch.”  Aaron realized that mulch was not an option on this increasingly boring day.  And he had already cut out the Sunday coupons.  His options were narrowing………and his frustration was rising.

Gary and I could see another storm coming……….a storm called Angry Aaron………..and there wasn’t much we could do to prevent it.  These times are when we parents of autistic  children………..or adults, as Aaron is………..try to balance those issues of using this time as a teachable moment or a time of discipline, as compared to feeling like we give in or enable poor behavior in our children.  Yet all of our years with Aaron have taught us that once he starts down a track of great frustration it is nearly impossible to turn him around in the same way that we could another of our children.  The disconnect, if you will, in Aaron’s brain just won’t allow him to see things any other way but the way that he sees it. There are times when we have to see Aaron’s world through Aaron’s eyes, and then seek to re-route that train that’s headed down the track to a sure collision. 

Aaron began to blame Gary and I for the lack of electricity.  No amount of explaining kept him from blaming us.  And if it wasn’t exactly our fault that the power was out, it was certainly our fault that we didn’t know when it was coming back on.  And if it wasn’t our fault that we didn’t know when it would come back on, it was most definitely our fault that we didn’t have a plan of action that would give him something to do.  Never mind that nothing we suggested was  acceptable to him.  It was still our fault!!

Aaron’s anger was escalating.  When Aaron gets really angry, he will break something – and it’s usually something that he likes.  So strange, but true.  Therefore, I was very thankful when Gary suggested that we go for a drive to see if we could find out where the power problem was.  I fully expected Aaron to demand that if we did find the problem, then Gary should climb up the pole and fix it……….since after all, it was HIS fault!

The drive was nice.  Of course, Aaron had to have on his favorite music and he had to talk the whole time, but at least he was happier.  We finished by going to Taco Bell, where Aaron had to examine every single item on the drive-through menu………and I told Gary to just order Nachos Bell Grande for him……….and right after that was done, Aaron said he wanted tacos.  Sorry, Aaron.  He ate his Nachos at our kitchen table, in the dusky light, with his TWO spoons and his TWO forks that he got from the silverware drawer, and the napkin caddy, and his water with a straw – always.

Gary grilled turkey burgers and turkey hot dogs on the grill, and Aaron ate a couple hot dogs while trying to sneak some to Jackson – always.  Then he and I played Skip-Bo by lantern light, and he was very happy about that……even when I won!  And just as we finished our game, the power came back on!!  Before I could hardly blink, Aaron had vanished.  He was in his room in record time, turning his computer on and treasuring at least a short time to play his game.  He wasn’t even angry when it was time to get off and get ready for bed.  The storm had truly passed, at least for that day.

When I went in to his room to say good-night, he told me to wait a minute.  He sat on his bed and reached for his digital clock on his night stand, then told me to tell him what time it was so that he could set his clock.  I told him that it was 11:12.  Click, click, click.  He set the correct time, then stood up and looked at his satellite digital clock by his desk.  His eyes became large and almost wild as he said, “It’s 11:13!!”  Back to his bed he went, and quickly changed his night stand clock to 11:13.
 
Another crisis averted!  Dear Aaron.  He wants his life to run like clockwork, but sometimes that just doesn’t happen.  Yet trying to explain that to Aaron is NOT easy.  Sometimes it’s not at all possible.  Therefore, Gary and I are the ones that have to constantly adjust.  We have to reset our way of thinking and our way of disciplining and our way of living on those days and in those moments.  We do get frustrated and tired, and sometimes we feel guilty for getting frustrated and tired.

But God is faithful in these storms…….in the tornadoes and in the Aaron issues, God is there.  Whether it’s 11:12 or 11:13, God is with us.  And there is much He can teach us through this Aaron of ours.

Like today……….Wednesday……..Aaron’s least favorite day to go to his day group.  But that storm story is for another day.  

I’m Iknorin’ You!

Yesterday morning was one of those mornings with Aaron.  If there is a morning that Aaron stubs up and refuses to go to his day group, it’s usually on Wednesday.  The staff at Paradigm cooks on that day.  They fix very yummy meals, but Aaron wants nothing to do with it.  For several weeks, Aaron told me that the staff was just going to give them tuna sandwiches and that he doesn’t like tuna, and on and on.  Well, I checked with some of the staff and found out that they have never fixed tuna sandwiches and had no intention of fixing tuna sandwiches.  Aaron was caught and he knew it.  Therefore, he has changed his Wednesday tactic. 

He got up on his own yesterday.  Andrea was busy getting ready to head back to Texas.  I found Aaron sprawled out on her floor, petting her little dog, Darcy……..who was trying to hide under her desk because she doesn’t exactly trust Aaron.  Darcy is a perceptive little doggie.  She doesn’t like Aaron’s booming noises, or how he bursts through closed doors, or his clapping, or his loud talking.  She does like the fact that he slips her treats………treats like gummy worms, or peanuts, or pieces of meat under the dinner table.  Therefore, Darcy will timidly allow Aaron to pet her as she searches his outstretched hand for a little food nugget.  Aaron had no such treat in his hand as he laid there petting her, so she stayed under the desk, keeping her distance as best she could.  Smart little Darcy.

I spoke to Aaron and he slowly got up, coming into my bedroom as I was getting ready.  He began his Wednesday morning con job.  “Mom, I’m tired,” he flatly said.  I told him that I was sorry, and then told him that I had poured his coffee…….which would work wonders on his tiredness.  This was not the response he wanted.  He wanted me to quickly realize that there was absolutely no cure for such extreme tiredness as he was now experiencing.  So with as much feigned exhaustion as he could muster, he continued.  “No, I’m really tired.  I read until 11:32 and then at 2:00 I was still awake.”  His tone was one of utter fatigue and was definitely designed to prick my tender mother’s heart……….and to allow him to stay home. 

Inside I was smiling, and I was also dreading the way that this morning might progress.  Aaron can easily turn very hateful when his worn-out ploy doesn’t get the desired result……..which is that Mom will allow him to stay at home.  I expressed concern for his weariness even as I went about my business.  I once again reminded him of the coffee waiting downstairs and his morning pills.  Aaron was beginning to see that Mom had a rather hard heart in her chest on this morning.  Therefore, he deployed Plan Number 2.

“Mom, I’m iknorin’ you.”  Oh brother!  This is one of Aaron’s favorite games to play anymore………..except it’s not a fun game.  It’s almost always a sign that he is getting fed up with me.  So I just “iknored” what he said and kept getting my make-up on, even as he followed me into my bathroom.   He stood there staring at me, hoping for some result that would come from his statement.  There was none.  He repeated, “I’m just iknorin’ you.”  Still no response from seemingly calm Mom.  “So I’m iknorin’ you.”  I shook my head but made no comment.  “I’m going to iknore you.” 

It was so hard not to laugh.  In his effort to ignore me, he was totally NOT ignoring me!  I don’t know how many times he repeated that he was “iknorin’ ” me, but I just sat there going about  my business………which in reality meant that I was the one doing the “iknorin’ “………….not Aaron.  He never seemed to come to that reality, however.

Finally, he walked out of the bathroom and made one more verbal fling.  “You can’t make me stop iknorin’ you!!!!”

At last he was out of sight and I could fully smile, and even chuckle.  He actually drank his coffee and took his pills, and then I heard him taking his shower.  Progress!  A good sign indeed!

He ended up sitting at his desk, watching his new GI Joe movie.  I realized that we might be able to leave early enough for me to take Aaron to either Dillon’s or Quik Trip to get a drink.  Knowing that the very sound of my voice might stir up his anger again, I decided to try a different tactic to ease him beyond his frustration on this morning.  I wrote him a note, and then quietly walked into his room.  I handed him the note over his shoulder, laying it on the desk in front of him.  He read it quickly before I could leave the room, and then he happily replied, “OK!”  And he immediately added, very softly, “Sorry.”  I patted his shoulder and left the room, where soon he joined me to say that he wanted to go to Dillon’s.  I breathed a sigh of relief.  He didn’t write me back on that little piece of paper.  Instead, he was willing to communicate.  More progress!

We had overcome that hurdle, but the rest of the morning was crazy, thanks to Aaron.  He said something to Andrea and me about opening the front door, so we rushed downstairs……….where we looked outside and saw Darcy running through our neighbor’s yard.  We ran outside and yelled, not knowing how far Darcy would run, but thankfully she came back to Andrea right away.  I was fussing at Aaron, who seemed oblivious to what he had done, and soon I hustled him into the van.  I was trying not to be late to meet his day group ride. 

We backed out of the driveway, and Aaron suddenly opened the van door and hopped out, not caring that we were in the middle of the street.  He said that he forgot something, and I yelled at him to close the van door.  I pulled back into the driveway as he scurried (as fast as Aaron can scurry) back to the garage, where he opened the door and went inside the house.  He came back carrying his container of peanuts, and off we hurried to Dillon’s.

I walked quickly into the store, with Aaron lagging behind.  He finally chose his flavored water and then had to have more peanuts, and finally we were done and on our way to meet his group, and of course he talked non-stop the whole way, and I was frustrated at being late…………  

But at least he wasn’t “iknorin’ ” me, right?  We pulled up to the day group van, where Aaron opened his window so that Craig would open his window…….and Aaron continued to talk.  I nudged him out as he grabbed his Dillon’s bag that held his peanuts and flavored water, and then he grabbed his other peanuts……all the while happily talking to Craig while he juggled his TWO containers of peanuts and his water.  Aaron was asking Craig about the barbecue that they were going to have that day, and informing Craig that he would NOT go to the barbecue in the park, water balloons or not.  

I had moved beyond being “iknored” and the whole dog incident and the tiredness of Aaron and rushing through Dillon’s by the time Aaron barged in the door at 4:30.  He rushed upstairs to find me as he yelled, “Mom!  Mom!”  He burst into my bedroom and proceeded to excitedly tell me about the barbecue in the park……..the barbecue that he had no intention of attending………and of the hamburger and chips he ate……….and the water balloons that he avoided………and the geese that he fed and the goose poop that he scraped off of his shoes. 

He dug in his pocket and pulled out some very dirty coins that I had him promptly throw away.   He continued to dig in his pocket and then pulled out a very ragged feather.  He held it toward me as he said, “Here, Mom!  This is for you.  It’s a goose feather.  Here, take it!”  I came very close to telling him that this feather was very dirty and that he should throw it away as he did the filthy coins, but the look on his face stopped me.  To Aaron this gift was as valuable as a gold and diamond necklace.  How could I say no?


So I reached out and took the possible goose feather, and I thanked him as warmly as if it was that beautiful necklace.  He hardly reacted, though I knew he was pleased as he thumped up the hall to his bedroom……..where he checked to be sure I had plugged in his keyboard, and then changed his clothes……..with his door open.  And he loudly reminded me to tell him when Wheel of Fortune came on, the way he does every single night.

That ragged possible goose feather with who-knows-what on it is still sitting on my desk……….a reminder that Aaron cared enough for Mom to bring me a treasure.  I never know what to expect from Aaron from day to day, from hour to hour…..even though at times he is so predictable.  His mind is amazing and multi-layered, that’s for sure.

I went from being “iknored” to being the recipient of a valued feather of unknown origins.  All in all, I’d say it was a pretty good day.

FADING AWAY

I called my mother on Sunday afternoon – Mother’s Day.  The phone rang a few times and her answering machine picked up.  Just as the familiar recording began, I heard Mom’s voice faintly say hello.  I knew then that I had awakened her from a nap.  I waited for the recording to end, for the beep of the machine to subside, and then I spoke to her.  She was confused for a minute as she tried to clear her mind.  Being roused from sleep always causes her to be very confused.  I told her who I was and that I just wanted to call her on her special day – Mother’s Day.  She was pleased, and as always, her ingrained politeness kicked in as she thanked me for calling.  It was almost as if she was talking to a casual acquaintance and not her daughter.

When I asked how she was doing, Mom told me that she had been in bed for awhile and that she really didn’t know why.  As we talked and her mind cleared, she was still very uncertain about herself.  Each time I talk to her, I can read between the lines and I know that she is failing mentally.  Actually, I don’t even have to read between the lines.  Her end of our conversations are most often very vague and this vagueness speaks so clearly of just how unclear she now is mentally.

We didn’t talk very long on Sunday.  Once the answering machine went off, she couldn’t understand me.  We said goodbye and hung up.  I called Jan then, and she told me that Mom was suffering from a bout of her severe colitis.  Bob and Jan, and John and Jeanie, take care of Mom as she lives in the beautiful assisted living center that she has called home for nearly two years.  They know all too well how her mental state is changing.  One of the saddest things that Jan told me was when Mom opened her Mother’s Day card from John and Jeanie, and she asked who John and Jeanie are.  It’s not the first time that she has shown that level of forgetfulness, but it’s always alarming to see.

When I call Mom and tell her my name, I’m not so sure that she always knows that this Patty is her daughter.  Her realization seems to come and go as we talk.  She never asks about our children by name but will instead ask me how the family is doing.  She is always pleased when I give her a report on Gary and each of our children.  Mom has that social politeness that is a part of her fabric, so she exhibits happiness as she hears about Aaron, Andrea, and Andrew.  But does she even know that these are her grandchildren?  And this polite conversation lacks the depth of familial closeness that we always shared.  Something is missing. 
What’s missing is………Mom.  Her very being has slowly been drifting away as the effects of her dementia increase.  She is living and breathing and talking, but MOM is fading away.  We still have her with us, and yet we don’t.  It’s a different sort of death.  We watched Dad fight cancer for eight years……….eight mostly good years.  He kept his mind all through this time.  His kindness……his wit……..his dear humor and sweetness and awareness never left him.  We could still share life with him, hard as it was, even as his own life was slipping away. 

But with my dear mother, there is very little sharing now.  There is surface talk and politeness, but the soul and the connections are mostly gone……..from her side.  For us – her children and grandchildren – we are always connected to her in ways that she probably no longer feels.  We must accept, though, that the motherly affirmation and expression that even as adults we still long for……..are for the most part gone. 


So many times I have found myself thinking that I would call Mom and ask her for some advice……….ask her how she made a certain dish……..ask her for a bit of family history that I wonder about.  But then I know that most or all of this part of her is gone.  Forever gone.  This is a sobering realization.  My totally competent, amazingly organized and gifted mother, is now the one who needs Jan or Jeanie to organize and manage her daily life. 

She no longer looks at her calendar and knows that March 20 is her anniversary or that May 2 was Dad’s birthday or that September 14 is her own birthday.  This past Christmas, Jan wrote a note that was taped on each of  Mom’s presents under her tree.  The note simply said, “Do Not Open.”  Yet shortly before Christmas day, Bob and Jan walked in to Mom’s apartment and found that she had opened every single present……….and was ready to put the tree away.  We smile as we see in that episode a side of our organized mother that is still there.  Let’s get the show on the road and then clean up the mess! 

Mom’s wit and her love of jokes and puns is almost legendary.  Yet now, at least when I talk to her, she seems rather flat.  Conversation lags between us because she has trouble with making important connections.  It’s hard to find something to talk about when she can’t even remember what that thing is that her cat, Princess, sits in front of………and I gently remind her that it is a window.  “Oh yes!” she says.  “The window!”  And I am struck with just how deeply she is affected……….and how deeply then we all are affected by this fading of her mind and memory. 

I love this picture of her, though, still working at The Hunger Challenge at Johnston Chapel.  Still serving and smiling and enjoying being able to help.  That part of our mother is still there, as is her kindness and her concern for others.  This exemplifies my mother to her core, and I’m thankful that she can still physically do these things, though somewhat limited.

This gradual letting go…….this sitting on the sidelines of her life and watching her gradually slip away……..is heartbreaking for all of us.  There is really nothing we can do but be there for her, as Bob and Jan, and John and Jeanie, are every day.  We can tell her about our families, even as we sense that she’s not sure exactly who we are talking about. 

And we can, and do, tell her how much we love her.  Someday even those words won’t really reach her.  But we reach into our hearts and into our memories, and we recognize her value to each of us in so many different ways.  Our love for her is not based on her memory or lack thereof. 

I also realize how important it is that I say to my children the words that I want them to hear from me.  Someday I may not be able to say them, even though I may still be here physically.  Words of encouragement, instruction, family history, and love………words I hope they store away in their hearts forever.

Our sweet little mommy is fading away, but her example and influence is as strong as ever.  In fact, her impact in our lives is eternal and we are all so thankful for that fact…..and for her.

We can smile through our tears and be thankful for all that she was…….and still is today. 

Be Quiet!

I have often referred to an old article that I have had for years when I talk about the traits of persons with Asperger’s Syndrome.  The article is from the Online Asperger Syndrome Information and Support website, known as O.A.S.I.S.  Karen Williams wrote a good article there entitled, “Understanding the Student With Asperger’s Syndrome:  Guidelines for Teachers.”  But this article is also an excellent resource for parents, siblings, or friends of those with many forms of autism.  I remember that when I first read this article, I thought Ms. Williams must surely have met our Aaron.  She was describing him so well!

In this article, as she writes about impairment in social interaction, Ms. Williams says that the individual with Asperger’s is insensitive and lacks tact.  She goes on to say, “When they have been unintentionally tactless or insensitive, it must be explained to them why the response was inappropriate and what response would have been correct.  Individuals with AS must learn social skills intellectually. They lack social instinct and intuition.”

And I say: “Yes! Yes! Yes!”  I don’t know how many times I have said to someone, “I don’t know how many times we’ve told Aaron not to say……”  Or, “I don’t know how many times we’ve told Aaron not to do…….”  Just fill in the blank.  Almost anything would fit.  Gary and I continue to correct, reinforce, admonish, explain, redirect……and pray a lot…….and get red faces a lot……..over some of the things that Aaron says and does.

Aaron will call it like he sees it.  For instance, someone in his day group has buck teeth.  One day Aaron was very excited to tell me about this person.  “Mom!  ______ has bucket teeth!”  As if that wasn’t bad enough, he proceeded to demonstrate what the bucket teeth looked like.  Somehow I held it together and explained to Aaron that this person couldn’t help what kind of teeth he had, and that he shouldn’t mock him. 
Aaron was totally confused.  He didn’t understand why his actions were wrong, so I rehearsed our lesson about not talking about people’s physical characteristics.  I knew where Aaron would someday go with this fascination about the “bucket teeth.”  Sure enough, not long ago Aaron said, “Mom!  I told _____ that he looks like a rabbit!” 
I knew this would happen……..so again I talked to him about how very wrong this was, and how would he feel if someone told him that he looked like a rabbit?  And Aaron’s response?  “But Mom!  He DOES look like a rabbit!”

It’s a good thing that I have a hard head, because I sure do beat it against the proverbial wall a LOT!!

The other morning, Aaron decided to play a little game with me.  I went in to wake him up.  He lay there perfectly still under his always-present pile of covers.  I spoke to him a few times as I opened his blinds.  Finally as I walked toward his bedroom door, he flatly said, “I’m iknorin’ you.”  I love how he pronounces the word “ignoring.”  So I chuckled and told him to get out of bed.  Later that evening, I went to his room to tell him that his favorite Wheel of Fortune was getting ready to come on the television.  As I walked out of his room, he said, “I’m still iknorin’ you.”  And as I went down the stairs, he continued, “You fell for it.  You’re weird!” 

Now he shouldn’t tell people that they are weird, especially not Mom, so once again I reinforced this fact when he came downstairs.  And of course, he affirmed, “But you ARE weird, Mom!”  Sigh.

I never like for Aaron to answer the phone, but Aaron LOVES answering the phone.  A few days ago, as I was getting ready to take him to meet his group, our phone rang.  Aaron made a beeline for it, so I told him not to answer it because I couldn’t talk.  He saw on the caller ID the last name of Travis……..a name he knows well.  He was very excited as he pushed the talk button and blurted out, “Mom can’t talk now!!”  Not even a hello from Aaron! I could hear Jennifer laughing heartily and then Aaron laughed.  He thought that this was so much fun!  And I was very glad it was my good friend who totally gets Aaron.

Aaron calls Jackson’s dog food “pebbles” because the pieces are little round balls.  Yesterday we went into Papa Murphy’s to get Aaron a pizza for supper.  Aaron wanted to look at the topping selections, so he looked down through the window at the containers of toppings.  Instantly he spied the little Italian sausage balls that looked like Jackson’s dog food pebbles and very loudly exclaimed, “That looks like DOG FOOD!!” 
And there I stood, explaining to the puzzled young man behind the counter, that our dog’s food is round like that sausage is round……….not wanting him to think that Aaron has just insulted the pizza toppings or Papa Murphy’s……….and Aaron was off inspecting the buckets of cookie dough and wondering where on earth the bread sticks were.

I remember years ago sitting in church, where we had a guest preaching on this particular Sunday morning.  Gary and I were sitting in the back, where we always sat with Aaron for obvious reasons.  This preacher was a little louder and moved around more than our pastor did……..our pastor that Aaron was used to and with whom he was very comfortable.  We could tell that Aaron was becoming frustrated with this moving, louder preacher.  And our Aaron, who doesn’t know how to really whisper, said rather loudly, “Can someone tell him to be quiet?!” 

At those moments, Gary and I look like we’ve practiced synchronized parenting as we both bent towards Aaron, who was sitting between us, and as we both clamped down on his legs and hissed at him to HUSH!!!  I’m sure that we could take gold in the synchronized parenting category.  And in the red-faced, we think we’re going to have a stroke, category as well.

Oh my goodness, how many times have we wished that we could just tell Aaron to be quiet!  But in retrospect, we can look back with much laughter over so many of the things that Aaron has said and done. 

And I guess embarrassment is part of building strong character in us as Aaron’s parents……….or just shows what a character Aaron is!

I may as well say it – keep talking, Aaron!  He’s going to anyway.