Category: Family

A Special Vacation With Aaron

Last week Gary and I took Aaron with us on a vacation/work trip back home to our families in both West Virginia and North Carolina.  It had been way too long since Aaron had been home with us, so it was nice to have this opportunity to take him along.  One purpose of our trip was to meet with my brother and sisters in West Virginia, and to go through all the items that were left in our mother’s storage unit since her death in May.  Then we went down to Gary’s hometown in the North Carolina Smoky Mountains.  We hadn’t been there in ages, so we spent more time there than in West Virginia on this trip.

Aaron is really a good traveler, which is surprising in some ways since he loves his routine and loves his things in order.  But he also loves time with us, and he loves the snack bag that I fill before we leave, and he loves the motel, and he definitely loves eating out.  He makes sure that he nails down the fact that we ARE eating out as we hit the road bright and early on the day we leave.  When that fact is established to his liking, he then seeks to determine if we’re eating IN a restaurant.

We usually stop at this particular rest area in Kansas City, which overlooks both the Chiefs and the Royals stadiums.  Aaron was only slightly impressed with that, pausing long enough for me to take the first obligatory picture of our trip…..the first of many that he tolerated as we vacationed together.

 

He was far more impressed with the Cracker Barrel where we ate a midday meal later that first day.  He loved the stuffed turkey that he and Gary found in the gift shop, and couldn’t wait for me to press the turkey’s wing.  Aaron rubbed his hands together in delight as the turkey sang, “Hey, good lookin’, what you got cookin’?  How about cookin’ something else but me?”  We heard Aaron sing that song several times that day.  And he also played the peg game while we waited on our meal, beating Gary on his first try!

 

Our server there was so kind to Aaron, smiling at him with understanding and even bringing Aaron his very own travel map.  Several servers on this trip were that way with Aaron…..showing kindness and even delight on the unique way that Aaron interacted with them.

 

Aaron quickly set up house at John and Jeanie’s when we arrived in Princeton.  We had barely said hello before he was deciding where he would perch himself and his DVD player, looking for an outlet and not at all concerned about rearranging furniture or grabbing a chair on which to place his DVD player in front of him.  He did the same thing at his Aunt Sandra’s when we got to Bryson City on Tuesday.  Never mind unimportant hugs or pleasantries.  The most necessary business was to get himself situated and comfortable.  Hellos and hugs and small talk was for the rest of us, after we helped him line up his little corner of the world just right. 

 

Aaron really did very well in so many ways on this trip.  Of course, he had times of frustration when he didn’t want to go somewhere that we went…..or he wanted to be on my tablet looking up GI Joe videos instead of going to see friends….or he was a little tired of seeing too much pretty scenery.  We had to work a few times to try to derail him from the track of frustration that he was on for the moment without becoming totally frustrated ourselves.  Then there were his loud noises which were new to many in the family.  He sure can make people jump! 

But there were very many moments to treasure, far more than the ones that we would rather forget.  He sat in our vehicle for over five hours while we went through Mom’s storage unit, watching Looney Tunes DVDs and making tons of crazy noises.  Like Mary Beth said, he was our sound effects while we worked.  I just wonder what the family down from us thought as they worked on their unit.  He hugged family and friends, he talked all of our ears off about aliens and other interests, he kept up a weird schedule, he slept in different beds, and he tolerated hours of driving. 

Here are more pictures of some of the things that were very special during this trip.

He found a fun bug at the West Virginia rest stop.
 

He was happy to finally be in West Virginia.

 

And happy to also go to North Carolina.

 

We had a delightful visit with Leo.

 

We ate at Naber’s……TWICE!!  Look at the view right there!

 

He sang for Aunt Sandra.

 

We went walking up Deep Creek.

 

And dad helped him find some little Deep Creek rocks……

 

while Aunt Sandra found a HUGE leaf!!

 

He was happy to go see Pam and Russ after a stubborn spell that day……

 

and pet and feed the horses in the pasture beside their house!

 

 
Those are just a few of the wonderful times we had on this special trip.  On the day we left to return to Kansas, Aaron had a mild seizure while still in bed early that morning.  He had another big seizure in the car on the interstate, and a larger one that night in the hotel.  He thankfully had just gotten out of the shower before that last seizure, and was sitting up in bed reading.  He hit his head really hard on the headboard as the seizure jerked him backwards, and then on the nightstand as it threw him sideways, but thankfully he was fine.  God was good to protect him, and to let him have a full week of fun and family before that seizure hit. 

It was a reminder of how fragile he really is in some ways, physically, and of how tough he is as he rebounds despite a sore head and a bitten tongue and not being able to taste food the next morning.  It jerks Gary and I back to reality, but also causes us to be thankful for every good day and special memory during our family trip. 

It may not always be easy to have Aaron come along, but it’s always worthwhile to have him along with us…..not just on this trip, but along this journey of life together with our special son. 

 

 

 

 

 

 

 

 

 

 

Beautiful Hands

This past May our mother passed on to heaven.  We said our final earthly goodbyes to her on May 8, and thus began our year of those firsts.  Many of you know them…….those first special days that you spend without that special person.  Our first “first” came quickly.  Mother’s Day occurred just two days after Mom’s funeral.  Isn’t that just like life?  Life doesn’t wait on us to get ready for the things that are hard.  They happen whether we’re ready or not.

Our next first is tomorrow.  Tomorrow is Mom’s birthday.  She would be 89 if she had lived to see this day.  I know, though, that none of us wish her back.  We had been saying goodbye to her for a long time as the symptoms of Alzheimer’s overtook her brain and body.  What a sad disease it is!  Alzheimer’s takes a person slowly, robbing them of their essence and their personality and their memories.  I’ll never forget going to see Mom last year, in June of 2014.  When Gary and I entered her assisted living apartment with Jan, Mom not only didn’t know us at all, but she didn’t even show any joy that we were there.  She would usually at least act happy to have visitors, but on this visit she was completely devoid of even that.  For the first time, I did indeed feel like a visitor…..and an ignored one, at that. 

Our visit that June was also the one where we gathered around Mom in the kitchen at Jan’s house as we sang hymns. Mom sang with us, surprising us all.  That time was deeply precious to each of us, including Mom.  Her eyes lit up as she sang.  She smiled and she tried to express what she was thinking about each song.  She remembered words very well, and we knew that each song resonated with her deep in her heart and mind. 

Before we left that evening to go on our separate ways once again, Mary Beth wanted us to all put our hands on the table together, and take a picture.  I’m so glad we did that.  Something about that picture is so personal…..so tender.  There is our mother’s hand, nestled among her children’s.  Her hand shows the effects of age….of hard work….of arthritis.  But her hand is beautiful.  And us….our hands also show the signs of age that are creeping upon us.  You can see some spots…..some lumps on our joints…..and several of us have that funny little finger that Mom had. 

 
I look at that picture and I think of how Mom’s hand was always in our lives.  From an early age her hands were ever busy with caring for us five children, and for Dad.  I remember her hands cooking and baking, sewing and cleaning, caring for sick children and looking after busy children.  She used her hands to show us how to make little troll doll clothes out of felt while she sewed real clothes for us to wear.  She used her hands to let us turn the handle on the food chopper as she made Cranberry Salad for Thanksgiving.  She used her hands to fill our table with huge baking sheets of homemade rolls while she pinched off little pieces of dough for us to happily eat.  She used her hands to teach us how to set a table and how to wash dirty dishes after loading the sink just right.

Her hands wiped our tears…..and sometimes caused our tears as she spanked us for disobedience.  Her hands worked to grow beautiful flowers and delicious vegetables, which she froze and canned and cooked and shared with others.  Her hands taught us how to do the laundry and to fold the clothes correctly.  Her hands taught us to iron whatever she had placed in our four baskets, each basket bearing the name of one of us girls.  Where was John’s?  J  Her hands taught us how to clean a house, how to hem a dress, how to play some of her favorite card games, how to make a bed the RIGHT way, how to take care of our varied pets, and how to plan the many practical jokes for which she was famous. 

Perhaps the most important use of her hands was when she would open her Bible in the early mornings as we all sat around the breakfast table.  Dad would have already gone to work, so before we left for school, Mom would be sure that we all opened our Bibles as she did.  She would read from the Our Daily Bread devotional book, reading the selected Bible passage first and then reading the devotion before we prayed.  Her commitment to God and to us was never more evident than during that precious time together every morning. 

Her hands made each of our wedding dresses and bridesmaids dresses.  Her hands cared for us after each of our children was born.  Her hands loved and doted on her grandchildren and great-grands.  Her hands knit literally countless numbers of Christmas stockings for family, friends, friends of friends, friends of family, pets……you get the idea.  Her hands quilted each of us a totally handmade quilt after she retired.  Then those always busy hands made, again, an untold number of quilts for others to enjoy.  Her hands took meals to shut-ins.  Her hands stuffed envelopes for the Crisis Pregnancy Center, for missionaries, and for church. 

Her hands cared for Dad for eight years as he fought cancer.  And it was her hands that he wanted to scramble his eggs that he loved during the final few weeks of his life.  Only her hands would do, and I understood that totally as I stepped aside and let her do this thing that she loved so much.  It was in their little kitchen that I noticed her hands doing things differently than she had ever done…..and I knew that the Alzheimer’s was lurking, waiting to overcome her in the following years. 

Her hands worked hard to care for Dad during that final month that he lived.  He preferred her hands above all others, but he knew that she was struggling, and so he allowed Jan and I to help as well.  But it was Mom’s hand that he reached for as they sat on the couch.  It was Mom’s touch that comforted him when he was so sick.  It was Mom’s hand that he held as he lay in his hospital bed…..her hand reaching through the bed rails as she lay alone in their bed beside his hospital bed. 

Jan took one last picture of Mom’s hands as she lay dying this past May.  There they were, crossed on her lap, still and unmoving.  She was nearing the end of her time on earth.  Her hands, though, spoke volumes to all of us.  I’m again so thankful for the picture that Jan took.  Her hands showed the evidence of years of love and work.  Now her hand’s work was done.  It was time for her to rest.

 
But the work of her hands will never be done.  Her work in our lives does indeed live on.  So much of who we are and what we are is because of her beautiful hands in our lives.  None of us King children would be who we are today without the influence of her godly, kind hands.  Then our children, and their children, show the impact of Mom’s hands.  What a treasure is to be seen in those soft, wrinkled hands! 

I’m pretty sure that her hand is now holding Dad’s hand in heaven.  I doubt that they’ve let each other go since she’s joined him there.  Unless there’s work for her to do, and then I can totally see her using those hands to make something or to keep things straight.  I wonder how many quilts she’s made by now? 

The Proverbs 31 woman was described as one who works with willing hands.  Our mother did just that, and for the rest of our lives we will benefit from her wonderful, willing hands in our lives. 

Happy Birthday, Mom.  Thank you for your beautiful hands in our lives.  You will always be loved.

It’s My Choice

“I am NOT going to Paradigm today!!” Aaron yelled at me. 

Here we go, I thought.  This will be one of those mornings.  And it was.  It all happened last Friday.  I’m not even sure what set Aaron on that anger path, but he was on it for sure with no apparent sign that he would exit anytime soon. 

“Go away from me!” he loudly said. 

Yet he kept coming into my room while I got ready, standing there telling me angrily that he wasn’t going to his day group.  But he knew the consequences of that decision without me uttering a word.  No Friday pizza.  He was in quite the dilemma as he stood there asserting himself, knowing that the further he dug his own hole, the further away he would be from his pizza supper.  Plus I wasn’t responding back to him the way he wanted.  He wanted anger from me, which would only feed his anger.  Aaron was ready for a verbal fight, and Mom wasn’t cooperating.  I stayed as calm as possible while still being firm, even though I wanted to yell every bit as loud as he was. 

Finally Aaron stomped away, walking up the hall to his room.  And then I heard it.  Aaron threw something up the hall, where it landed on the floor outside of my bedroom.  I knew what it was without looking.  It was his watch…..his broken wrist watch.  He had broken it at Paradigm almost two weeks earlier, although the details are still unclear. Nevertheless, it was broken and I didn’t replace it immediately.  So on this anger morning, Aaron decided to focus his anger on his broken watch….demanding a new one once again and complaining about how much he needed his watch. 

Aaron could tell that I was getting ready to leave the house, with or without him.  “OK!!  I’ll go, if you’re going to MAKE me!!” he said, dripping with frustration.  I silently went to the van, where he followed me and then stopped.

“Wait!” he said.  “I have to get my watch.”

He went back into the house and retrieved his broken watch, stuffing it in his pocket.  He couldn’t wear it on his arm, but every day he had put it in his pocket and taken it with him anyway.  Today was no different.  We were mostly silent on the way to Paradigm.  It was later than usual.  Aaron was sullen and still steaming.  I was deflated and tired. 

Earlier, as my friend Atha and I texted, I had said to her, “There are times I truly wish for a normal life.”  I always feel guilty after expressing myself that way, for I know that this life is what God has somehow allowed me to have.  I want to be like Esther, who came to realize that God in His sovereignty had put her in the place she was for that particular time.  Yet sometimes the place of us special needs moms seems to just be a place of frustration and dreary sameness.  We do get tired, especially on the angry days such as I was having with Aaron.

He got out of the van, still irate but somewhat calmer.  I just drove away, weary.  But I thought about Aaron with his broken watch in his pocket, carrying it with him all that day.  He also carries something else with him, something that often feels broken.  My heart and spirit.  A mother is a mother, forever changed by the children that carry part of her with them for the rest of their lives.  Aaron isn’t the broken one, but I often am.  I need God’s grace and strength so many times on this road, and He never fails me.  But I still feel the pain in my heart, my heart that Aaron unknowingly carries with him…..tucked away, just like his broken watch.

 
Later, I walked in the house and my eyes were drawn to a very little porcelain figure perched on top of our DVD player.  Aaron and I had set it there a couple weeks earlier.  I thought of the story told by that little figure, the love it represents.

Aaron had been to the zoo on Friday of that week.  He came home, excited to tell me about his favorite animals that he saw.  When I asked him if he had bought anything to eat, he told me that he had not bought any food but had instead bought something for me.  But with regret he told me that he had left it at Paradigm. 

“I can’t tell you what it is, Mom!” he exclaimed.  “It’s a surprise!!”

So when I took him to Paradigm after the weekend, on Monday, he was very excited for me to come inside with him so that he could hopefully locate his surprise for me.  He barreled into Barb’s office with me in tow, and Barb immediately pulled out of her desk a small brown bag from the zoo.  Aaron couldn’t wait for me to open it as he handed it to me.  And there inside the bag, wrapped in bubble wrap, was….well, what was it?  It was so tiny that I couldn’t exactly tell.  Aaron was rubbing his hands together as I gingerly pulled out a little porcelain zebra.  Why a zebra?  I have no idea.  But I loved it.  I loved the fact that Aaron had spent all of his money on Mom…..even though I worried that he went hungry.  What a special, loving gift from my son!

Now it sits on top of our DVD player, where it’s mostly safe from being broken.  You can hardly see it from across the room, it’s so little.  But the joy on Aaron’s face when I opened it was huge, and so was the joy in my heart. 

My heart, like all mom’s, holds at times great joy and then at times great hurt.  As with every situation in my life, then, I have a choice to make.  I can’t ignore the hurt forever and I can’t capture the joy forever.  We all experience both.  But I can choose which to dwell on the most. 

I can linger on the brokenness and carry it with me, like the watch in Aaron’s pocket as he carried it there day after day.  Or I can choose to see the beauty, hard as it may be, that does often surround me in my life with Aaron.  Brokenness or beauty…..it’s my choice.  In every area of life, that choice is mine to consciously make.  As I deal with Aaron, it’s also a decision I must choose. 

Will I see Aaron as a blessing?  Or will I see Aaron as a burden?  Will I allow my grumbles and sighing and my desire sometimes for a “normal” life rule my thoughts?  Or will I pull back, take a breath and pray to my heavenly Father, and then choose to see the blessings?  Even at the end of the day, if all I can say is, “Well, at least Aaron and I are both still alive.”  Hey, I’ll take it!  It’s a blessing!!

On that angry Friday, that tiny zebra reminded me that I do have many blessings and joys in this life with Aaron.  Sometimes they’re harder to see than at other times.  Sometimes my spirit is very frustrated and tired…..but so is everyone.  Really, we all experience plenty of both in our lives. 
 

What will it be? 

Brokenness…..or beauty?

Burden……or blessing?

A text from Atha this morning was perfect:  “Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name.  For the Lord is good and His love endures forever; His faithfulness continues through all generations.”

 

 

Tired of Love?

Some of you have been asking about how Aaron is doing.  We don’t really know how his sodium levels are holding right now.  We need to have more blood work done to find that out.  He’s drinking less water than he used to drink, but probably still more than the doctor would want him to have.  We’re just doing the best we can do there.  Let’s just say that he does NOT take kindly to having his fluids restricted.  Some days and moments are harder than others.  Much of it depends on his mood.  Much of everything depends on his mood, actually.

One day his friend at Paradigm gave Aaron some food.  I was a little leery of this idea, so I told Aaron that he probably shouldn’t be eating food offered to him like that. 

“You’re saying I can’t have WATER, and now you’re saying I can’t have – like – FOOD?!” he exclaimed.

He lives a tough life, let me tell you.  A very tough life.

Aaron loves listening to CDs when we drive to his day group, unless he’s having a grouchy day.  Then he punishes me by saying he doesn’t want to listen to any music.  Anyway, we had listened to an instrumental CD and I guess it wasn’t his favorite.  The next day he said, “Will you get a CD where they’re singing in WORDS?”  Ok, ok.  So we I picked out an Olivia Newton John CD, one where she’s singing her old songs.  Aaron listened quietly.

Finally he said, “Mom, I noticed something.  She just sings about love.”

“Is that OK?” I asked.

“Well, it’s weird,” he answered.  “Music companies today don’t just sing about love.”

He’s right about that.

The next day we turned on the same CD, and it began where we had turned it off the day before.  Again, Aaron listened quietly for a couple minutes.  Then he flatly said, “I’m getting tired of love.”

I did laugh out loud at that one.  Come on, Aaron.  We never get tired of love! 

So to finish this, I’ll just show you some pictures of Aaron and of how he loves, and IS loved, every day.  And of how he’s funny, too!

He found a turtle down in the grass in our back yard, so Gary helped him turn it loose in the lake behind our house.  Aaron was so happy with that turtle and didn’t want to give him up, but he was happy to know that the turtle was very happy to finally go to his home. 

 

We went to see The Minions with Rosa and her mom, Louise.  Rosa asked her mom if she could go to a movie with Aaron, which was so sweet.  And the loudest I heard Rosa laugh was when they were walking out through the lobby and Rosa took a drink of her Diet Coke.  Aaron loudly said, “Is that BEER??!!”  And they laughed and laughed, while Aaron rubbed his hands together. 
 

 

Aaron went with me to get dog food at the vet.  Aaron loves getting to see the resident cat, Kato.  Patient, patient Kato. 

 

Aaron has offered to help me clean garden veggies several times.

 

And he thinks it’s so funny to always do this at least once when he eats a peach.

 

I think it’s funny that he often wears his socks with the heel part on top, no matter how many times I tell him that the gray part belongs on his heel.  He totally doesn’t care.

 

He does care about testing plants when we go into different buildings.  He showed me this piece of a leaf after we left the doctor’s office.  He now knows that his test proved that the plant is real.  Sigh.

 

We have eaten out several times on doctor visit days, which is really why Aaron goes with me on doctor visit days.  He doesn’t care at all about seeing the doctor.  It’s his restaurant of choice that fills his thoughts. 

Aaron thought it was funny to be in a huge booth, far apart.
 

One of his friends gave him a Krispie Kreme hat, so Aaron proudly wore it for a short time.  Hats are not his favorite.  Neither are donuts.  Can you believe that?

 

Life with Aaron is never dull.  And he’s always loved, even when he’s tired of love.  

And when he’s not always easy to love.  That happens, too.  I have a picture of his broken watch, but that will be for another time.

Today we sing about love.

 

 

 

Painting Aaron’s Room

This past Saturday was a big day for Aaron.  That’s the day that we had his room painted.  The popcorn ceiling was removed and then the ceiling was painted; his walls were repaired and painted; and then the hall bathroom was painted as well.  “Us kid’s bathroom,” as Aaron calls it.  It’s fun to have a room painted, especially when you’re not doing it yourself.  We hired our neighbor’s friend, Rudy, to do the job for us. 

But for Aaron, it’s not fun to have a room painted…..especially when the room is his room.  He doesn’t care who is doing it.  He just doesn’t like all the ways that it affects him. Of course, we know this about Aaron.  That’s why we started preparing him for this big event a week before the job was to be started.  As we were eating on that Sunday, we told him with excitement that his room would be painted that following weekend.  We exhibited the same enthusiasm as we told him that we would need to move all of his furniture, except for his bed, out of his room before the painter came on Saturday.  

Aaron tilted his head as he often does and was silent as he thought about what we had just told him.  He was staring out ahead, but we knew that in his head things were happening.  You could almost hear the wheels turning as Gary and I waited with apprehension for his reaction.  Finally he spoke.

“Are you moving my book shelf with all my DVDs on it?” he asked.

We told him that we were going to move it.

“They need to be in order!” he told us.  “You’re not taking them off, are you?”

We assured him that we could move the book case without removing his DVDs……DVDs that are in a particular order and should not be disturbed by us mere mortal parents who have no idea of the importance of that order. 

On the next day, Monday, during supper again, Aaron asked about having his room painted.  “You’re not messing up my DVDs, are you?” he once again asked.  And we once again assured him that we would not mess them up.

“Well, can I play my computer?  Will it be messed up?” he anxiously asked us.  So we assured him that his computer would not be messed up and that he would be able to play it again.

“After the room is painted, can I hang my calendar?” he wanted to know. 

We told him that he could hang his calendar after we decided where all his new wall art was going to be hung…..but yes, he would definitely have his calendar.  The smallest things are huge to him.  There is no such thing as a small change in Aaron’s life.

And later that night, we heard the question again.  “So you’re moving my book shelf and DVDs?  You won’t mess them up, will you?”  This is when I began praying that we wouldn’t tip the book case over and spill the DVDs.  I couldn’t even imagine that scene.

On Tuesday, Aaron looked at us with worry as we told him that we would move his things out of his room on Friday night. “Can I play my computer just one last time before we paint my room?” he questioned.  He sounded like he was making his dying wish, for heaven’s sake!  This was just Tuesday, but he was wanting to be sure that on Friday night he could play it just before we moved it. 

Over the next several days, he continued to ask questions and to try to adjust to this huge coming disruption.  The big move on Friday evening went smoothly.  Gary even hooked Aaron’s computer up in Andrew’s room, still on Aaron’s own desk, and he was one happy camper…..despite the change.

We then broke the news to him that he would be sleeping in Andrea’s bed on that night.  He was very skeptical about this prospect.  I praised her bed and extolled all of its comfort and convenience, but he wasn’t convinced.  He said it wasn’t the same size as his, and I told him it was.  He said his sheets didn’t fit on it as well as I took her sheets off and put his on, but I told him they did.  I shot down all of his arguments as we placed his covers on the bed in their particular order that he likes and as we placed his snake, skunk, and frog in their certain places.

I got him tucked in, turned the light off, and said one last good-night as I closed the door.  I went to my room, but it wasn’t long at all before I heard that he was out of bed.  I opened his door and found him sitting on the bed, signing his bedtime log.  Of course.  It’s important for him to record the time he goes to bed and the time he gets up.  Once that was done, I tucked him in again and turned off the light.  He was in bed once again.

I was washing my face when I heard the knock on our bedroom door.  “Mom?” I heard Aaron ask.  “Can we watch Wheel of Fortune tomorrow?” 

Yes, Aaron, we’ll watch Wheel of Fortune tomorrow.  Now go to bed.

“Well, I don’t really want to sleep in Andrea’s bed.”

Go to bed, Aaron.

So he went to bed, where I tucked him in once again.

It didn’t take long until there was another knock on our door. 

“Is it going to rain?” he wanted to know.  I told him I didn’t think so.  “I mean, like a storm?” he asked.

No, Aaron, it’s not going to storm.  Go to bed.

He went to bed again.

Soon I heard it.  Thump, thump, thump.  Aaron was going down the stairs.  He was back upstairs before long, where he told me that he went downstairs to say something to Gary…..anything to keep from getting in bed. 

Aaron…..Go.  To.  Bed.  He did.  And he stayed, thankfully.

His report the next morning:  “I didn’t sleep well.  It’s not like my bed where the covers don’t move a lot.”  I didn’t have the energy at that point to ask him to explain that one.

Aaron handled the actual paint day very well.  He stayed busy on the computer, talking to us, going outside to sit by the garden and relax in the leaves and sticks, and generally ignoring what was happening in his room.  He showed no excitement or interest at all.  His biggest concern was his shower that night.  He couldn’t use “us kid’s bathroom” since it was still wet.

“It’s 8:00,” he said.  “I need to shower.”  His shower is at 8:00 every night, or shortly thereafter.  NEVER before 8:00.  Just so you know.  We do.

I took his towel and pajamas into our bathroom, which once again didn’t thrill Aaron.  “I wish this man wasn’t here,” he lamented.  “And I wish I was back in my room.”

Well, the next night he WAS back in his room.  I was worried because Gary wanted to move Aaron’s furniture around.  I just knew that this would tip the boat, and be too much change for Aaron.  We used our excited voices when we showed it to him.  All he cared about was:  were his DVDs messed up; was his computer going to work there: and when could he hang his calendar.  He was pretty unimpressed with everything else, and pretty irritated as we showed him some new things about his room. 

“You guys think I don’t know anything about my room!” he impatiently told us.  So we kept quiet as he went on playing his computer game. The amazing thing was that he handled the new room with ease.  That was a surprise for me!  He even slept in his bed that night, happily, despite the fact that his nightstand holding his lamp and his clock were on the opposite side from where they usually are.  He’s also putting his Handy Answer book on his night stand shelf instead of on the floor like he prefers, and tried to do the first day.  Progress!!
 

 
He followed me as I carried his coffee upstairs to his room on Monday morning. “Can we put the coffee on the shelf like we used to before that man came over?” he asked.  He refers to the painter, Rudy, as “that man.”  And he says it with an element of disgust, so it shows me that he really is somewhat frustrated by all of this change.  And he blames it on our painter, because Aaron has to blame someone for his discomfort.

Aaron’s room being painted is a huge improvement, though he doesn’t seem to care one bit about it.  But just as huge is how well he did with this interruption to his routine, and how easily he has adjusted to his new room. 

Also huge:  his DVDs didn’t get one bit messed up.  Thank you, Lord!!!

 

 

 

 

What Happened to Happy?

It’s very interesting, as we live this life with Aaron, how we see all the ups and downs that go along with autism and Epilepsy and developmental delays.  We not only see the ups and downs, but we deeply experience their effects on him personally and on us as well.  Certainly anything that affects Aaron impacts Gary and I, too, and what a ride it can be!

Aaron really wants to enjoy happiness, but he wants it on his terms.  Sometimes that’s just not possible.  There are occasions where Gary and I walk a fine line as we attempt to provide a happy environment for Aaron without giving in to his every whim.  It’s like being on a boat.  We can be trolling along, happy and peaceful, and then all of a sudden we run upon choppy seas that threaten to overturn us.  Some days we can see the storm coming with Aaron as we read his mood.  Other days the storm swirls in out of the blue, unexpected, catching us off guard and then demanding all of our skills that we hoped we’ve learned over the years of parenting Aaron. 

This past Sunday night, Aaron and I were in the kitchen after playing Skip-Bo.  He was thinking of the next day as he said, “Mom, tomorrow’s Paradigm.  Let’s not let me go!”

I laughed at the funny way he phrased his comment, and then he laughed, and all was well.  The next day he was more adamant about not wanting to go.  Aaron loves Paradigm, but his dream life would be to stay home every day playing on the computer or watching movies.  That’s not going to happen and he knows it, but he still tries to test those waters.  He did go to Paradigm, but he did slam the van door and so I prayed as I drove away that somehow he would have a good day.  Barb said he was VERY grouchy when he came in but then settled down and had a really great day.  Yay!  Not yay for VERY grouchy, but yay that the rest of the day was great. 

Aaron pushed my buttons when he got home, blaming me for ruining his dream life and other ills as well.  Supper didn’t suit him, so Gary and I actually enjoyed a nice meal alone with uninterrupted conversation.  May as well see the silver lining in the cloud.

Later, Aaron and I had a talk, where I got firm and Aaron saw the light.  He was nice the rest of the evening…..almost.  Then came bedtime.  Why do so many things happen at bedtime?!  For instance, a couple weeks ago it was time for bed and Aaron knew it was time for bed.  If anyone knows anything about time, it’s Aaron!  But he was watching a movie, not wanting to quit until he was at some magic point, and so I did all the bedtime chores I do for him….and still he sat at his desk, engrossed in the movie. 

So I said goodnight, with some aggravation in my voice, and went to my bedroom.  I locked the door because I figured I would be followed.  Sure enough, I soon heard Aaron’s heavy steps coming up the hall.  He knocked loudly on the bedroom door and then said, “Mom!  I want to say goodnight in my room!”  You see, I hadn’t said our goodnights in the proper Aaron way.  I sighed and opened the door, where Aaron repeated what he had said about saying goodnight in his room.

“Come on!” he commanded as he walked briskly up the hall toward his room, before I could object.  But I did.  “Aaron,” I protested.  “I already said goodnight.”

“But you weren’t happy,” he explained.  How perceptive, I thought.  So, very tired and just wanting sleep, I followed him to his room.  He went into his room, turned toward me, and reached out for a hug.  I complied with an obligatory hug, not a heartfelt one.  I was still aggravated….and Aaron knew it.  I even said goodnight, but Aaron stared hard at me and then said, “You’re still not happy!”

So out went his arms again and this time I had to smile, more inside than out, as I gave him another hug.  I tried to make this hug more sincere, and I even did smile an outside smile as he stared at me again.

“Are you happy?” he cautiously asked.  And I assured him that I was happy, so that he would be happy, and I finally was released to go to bed…..at last!  His insistence on going to bed happy really was the right thing to do, much as I didn’t want to participate at that point, and his perceptions were also pretty amazing. 

Back to Monday night.  On Monday night I found myself wishing with all my might that Aaron wanted to be happy.  You see, Gary and I are getting ready to paint Aaron’s bedroom.  Gary has patched Aaron’s walls, but on Monday night Aaron wanted to show Gary a huge mark on his otherwise repaired wall.  Gary was shocked to see the mark.  We both think that Aaron made that mark on Monday morning when he was mad at me, but Aaron wouldn’t own up to that at all.  In fact, when Gary asked Aaron when he had made the gouge in the wall, Aaron hit the roof.  Boy, did he ever react!!

Aaron accused Gary of accusing him of making the mark.  “Well,” Gary replied, “who else could have made it?”  Aaron was beyond furious.  He became livid.  Gary and I both ended up in Aaron’s room, where Aaron erupted over and over.  He was in a full meltdown, and it wasn’t pretty.  It’s actually very amazing to see the progression of his thought processes when he’s out of control like that.  I’m just thankful that we don’t see this scene very often.  He never owned up to making the mark, but he sure did fling out all sorts of insults and angry comments.  I told Gary to go on to bed, and I sat with Aaron for awhile.  He was mad at me, too, at this point.  He watched a movie for a few minutes and then commanded me to leave his room. 

What happened to happy?  It was totally gone at that point!  I went to our bedroom, where Aaron followed and barged in, yelling some more and refusing to leave.  He did finally leave and he did stay in his room.  He went to bed around 12:30.  I’m sure he wrote down the precise time in his journal. 

He went to Paradigm the next morning.  I praised him for his maturity.  When he returned home that afternoon, I could tell that he was still struggling with some anger.  Yet when Gary got home, Aaron was fine.  We had supper and a pleasant evening, which was so welcome after the awful anger of the night before.  Aaron asked me to tell Gary what I had told him about being mature, so I told Gary how mature Aaron was to go to Paradigm without a fight.  Aaron stood there rubbing his hands together as I praised him to Gary, so happy at those words…..at last!

Yesterday after supper, Gary and Aaron took a walk out in our back yard with Jackson.  I looked outside and felt warmed by the sight of the two of them walking together.  What a picture of reconciliation!  The restoring of relationship is something we do fairly often with Aaron.  We must….because we love him and because it’s right.  All of us have these family moments and life moments where we have to come together again with those who have angered or hurt us.   Gary and I have to be the adults in these situations with Aaron.

But I guess that’s not always true, is it?  Didn’t I just tell about how Aaron came to get me when he knew I wasn’t happy?  How he insisted on being happy before we went to bed?  So I know that there are times when Aaron can and does get it right…..and I have it wrong. 

Our boat is once again sailing calmly.  He knows that tomorrow is Friday and that I’ve agreed with his request of a Papa Murphy’s pizza for supper.  Yet I know that the winds can change direction at any time, and another storm can blow upon us.  I know that I will once again, at some point, be asking what happened to happy.  Let’s pray that happy hugs are all it takes next time to bring the ship upright and make it steady again.    

Let’s hear it for happy!

And hugs!  Lots of happy hugs!

Yes, Another Great Clips Story!

I just can’t resist.  Here I go again, writing yet another blog about Aaron’s visit to Great Clips this morning.  I’ve written several blogs about his times there.  What is it about Great Clips, you might ask?  Or maybe not.  Anyway, it’s as if Great Clips is a microcosm of Aaron’s life and ways every time we go there.  He’s funny and unfiltered and embarrassing……and more……from the second he walks in the door.

Last night I told Aaron that we might go to Great Clips the next morning to get his hair cut.  The operative word was MIGHT, because somehow Aaron rarely hears that word when it comes to possible places we might go.  That’s why I usually wait until the very last minute to tell Aaron of a possible trip.  If it doesn’t work out, he is not happy at all.  The operative word is NOT, as in NOT happy AT ALL.  But I wanted to tell him last night that we might…..MIGHT…..go to Great Clips so that he could be mentally prepared to get up early and leave the house hopefully before 9:00.  This is out of Aaron’s routine and he needs a good reason to get out of his routine.  A GOOD reason.  And Great Clips is a GOOD reason for Aaron.  He loves going there. 
 
The reason I had told him we MIGHT go to Great Clips is because I never know how long the wait will be for a haircut.  If the wait is too long as we are on our way to his day group, then we can’t go.  No MIGHT about it at that point, but Aaron never sees it that way.  So this morning, my heart sank when I logged in online and saw that the wait was 16 minutes.  Aaron would love the precise time, by the way.  That would make Aaron late to arrive at Paradigm, though.  But Aaron had forgotten all about the MIGHT word as he walked with resolve out to the van.  Only 9:02 and the wait was already that long on a Monday?  Bummer!

Aaron has totally no reserve when he barges through the swinging door of Great Clips.  That’s why you would have seen me in a mad dash to grab my keys and purse as I hurriedly opened the van door, hoping to beat him to the front door.  I rarely do, and this morning was no exception.  He barreled in just inches in front of me, but being aware of this he wasted no time in hurrying as fast as he could to the front desk as he bellowed, “I need to hurry and go to Paradigm!!”

And we’re off, I thought, as I tried to regroup while the two men who were waiting and the two men who were getting haircuts just stared at unusual Aaron.  The stylist was new to us, but she smiled and walked over to the computer to see that we had signed in.  At the same time, I was correcting Aaron and giving him a little Emily Post lesson on good manners when barging into Great Clips…..all of which meant nothing to him.  He was already checking out the container of tempting ball point pens, hoping he would be able to sneak at least one of them into his waiting pocket. 

We sat down, minus the Great Clips pen, and I continued with my manners lesson.  “I was just trying to get them to hurry,” he explained.  And I continued to explain the concept of the word “rude.”  Should I include the word “shocking?”  Maybe not today.

But I WAS trying to reinforce the idea of talking softly as Aaron sat there talking in his usual loud voice.  He didn’t like that lesson, Emily Post or not, and he reached over to give me a whack on the arm.  I felt my face getting red, mostly from embarrassment, as I felt now three sets of eyes on me from the three men who sat around the waiting area.  With the lesson on not hitting and on talking softly under his belt, Aaron got up and lumbered across the room.  I just watched him with bated breath, wondering what he was going to do now.  He had spied the DumDum suckers in a glass container on the counter, so he took one and came back to his seat, where I helped him open it and in his mouth it went.

After a couple minutes, he took it out of his mouth and started talking again.  I saw his green tongue, and so I told him that his tongue was a nice green shade.  “Green?” he asked loudly as held up his sucker.  “This sucker is red!”  Ah yes, there’s that color blind factor again.  Dad would have confirmed that it was red as well, but I confirmed that it was green as Aaron stuck his tongue out for further inspection.

 
Soon the stylist called for the next customer.  “Kelly?” she called out.  And the man with the name Kelly got up and went to the salon chair.  Aaron just looked at him and then said, loudly of course, “Kelly!”  I didn’t want Aaron to say another word, not knowing what opinion he was going to give of that name or anything else that might come into his mind, so I shushed him quickly with a pat on his leg and a reminder in his ear.  The stylist who was getting Kelly ready looked over and said, “Hi, Aaron!”  She knows Aaron and her greeting surprised Aaron but made him happy, too.

Not long after, thankfully, it was Aaron’s turn and so he heard his name called.  He stood up beside me, taking his glasses off first and then his watch.  He always takes off his watch as I sit there and always tell him he doesn’t have to do that, but he always takes it off anyway.  He is oblivious to the stares of the other customers.  And the stylists always smile.  As soon as Aaron was seated, another stylist came out from the back and I heard her say, “Hi, Aaron!”  It’s so sweet how many of them know Aaron and greet him by name, with big smiles.  He IS hard to forget, that’s for sure.

Somehow, as soon as Aaron sits in the chair, he is often speechless.  The stylist asked him a question, but he remained silent, so she mostly just cut his hair and let him enjoy the experience.  We paid at the counter a few minutes later as I kept one eye on Aaron. 

 

No, Aaron, you don’t need another DumDum.  Quit trying to put it in your pocket.  Don’t you try to sneak it out of there!  Put it back!

No, Aaron, you don’t need a Great Clips pen.  You have thousands of pens at home.  Or at least it seems like it.  Do NOT put it in your pocket.  Put the pen back!

Finally, we were finished.  The stylist was paid and given a tip.  The DumDums were still in their glass container, and the pens were perched where they belonged, with none missing…..I think.  Aaron had put his glasses on and had situated his watch halfway up his arm as he always does.

We walked to the van. I was opening my door when Aaron said, loudly, “Mom!  Mom!  Look at what martial arts does!” 

And there he stood at the window of the martial arts studio in front of where we parked, pointing to the poster on the window as he made sure I noticed each martial arts move listed there. 

Just when I thought he couldn’t be any more noticeable, he proved me wrong.  I was wishing he wanted to get IN the van as quickly as he wanted to get OUT not 20 minutes earlier. 

Oh well, I just roll with the flow.  I figured my face needed a little color today anyway. 

Do you see why I wait as long between haircuts as I possibly can? 

 

 

My Other Body

Last night Aaron came up to me and said, “Mom, the carpet in us kid’s bathroom is wet.”  I asked him why the bath mat was wet.  He answered, “Because when I finished my shower, I dried my other body.  Then my feet were wet when I stepped on the rug.”

I just smiled.  I wanted to ask him about his other body, but instead I just enjoyed the unique way that Aaron describes things and expresses himself.  And I’ve been thinking since then about how many different ways Aaron reacts to life around him.  He has many ups and many downs.  Sometimes it really is like he has various bodies.  Then Gary and I feel like we have a variety of bodies, too, in any given day as we react to how Aaron is reacting.  We do get jerked around a lot, waffling between pleasant moments and pulling-out-our-hair moments.

Last Sunday, Aaron’s week started out nicely.  He found something very special as we walked around the back yard.  Only Aaron would find a turtle virtually hidden in our thick grass, up near our patio.  I walked right past the turtle and then heard Aaron saying, “Look, MOM!!”  I turned around to see him holding the turtle, poking his finger in to where the turtle was hiding his head as I warned him that he would get bitten.  Aaron proudly held his find before he and Gary turned the turtle loose in the finger of the lake that comes onto our property.  The turtle was still for a moment and then with a dive took off into the welcome water.  Aaron was delighted, although he still was hoping he had found a turtle pet. 

 
Later that night he talked to both Andrea and Andrew on the phone.  He always has to tell Andrea about his latest movie that he’s watching, describing it in detail.  She always shows great interest whether she really is or not.  I would say she’s usually not.  Neither are we, honestly.  I have no idea how many movies it is now that Andrea is either supposed to rent to watch, or watch with Aaron when she comes home.  Aaron probably won’t forget.

He talked to Andrew about racing, which is so unusual.  There was a time when Aaron was very jealous of Andrew.  He didn’t want to see him on ESPN when we watched an NHRA race, but now Aaron really enjoys seeing Andrew.  It was fun to hear Aaron say, “Hey, Andrew, I see you on TV!”  And Andrew acted surprised by that, to which Aaron affirmed that this was true.  “Yes, I see you on TV!”  So Andrew said, “Well, maybe someday I can wave and say hi.”  Aaron’s face broke into a huge smile.  “You would do that?” he asked.  “You would wave and say hi on TV?”  Andrew assured him that if he could ever do that, he would.  “On TV?!” Aaron asked again.  It was a sweet exchange between those two brothers.  Aaron, who is the oldest, seeming again like the baby of the family in more ways than one.

On Monday, I worried that Aaron would have a hard time going to Paradigm, but he did beautifully that day…..and all week, actually.  After the huge adjustment of returning to his day group after being gone for a month while he was sick, this second week of smooth sailing was so welcome.  Even with Bryan gone this week on vacation, which meant that Aaron wouldn’t be helping work on houses, he still had no problem going every morning.  Except for a little on Friday, but more on that later.

He came home on Monday in a very good mood.  All was well and happy for our evening…..until I walked in the kitchen and saw him with a second glass of iced tea.  I let him have one glass while we watch Wheel of Fortune, but he’s famous for trying to sneak in two glasses.  I caught him in the act as he was putting the second glass to his lips, so I told him that the glass of tea was his special treat then.  I wasn’t going to fix him anything else.  And the tide turned.  The mood darkened, dramatically.  He became belligerent.  The past few happy days came cascading down into defiance from Aaron.  He hovered behind me on the computer, saying whatever mean thing he could think of without totally crossing the line.  He gave his fake sinister laugh to add some effect.  He would walk away for a minute, only to return and repeat his actions.

I finally had Aaron come into Gary’s study and sit on the floor.  Gary and I talked and talked to him, not seeming to really make any headway at all.  It was just amazing to see how his thought processes just don’t process at all like ours do.  He wasn’t connecting the dots in any way like we do.  It was just another lesson in frustration for Gary and me.  Another evidence of Aaron’s different bodies, if you will.  How quickly he can go from joy to anger, and how tremendously hard it is to reason with him.   

Sometimes our bodies are tired, as are our spirits, and such was the case Monday night for Gary and for me.  I’m thankful to have Gary by my side.  He fills in many gaps for me, and I do for him as well.  We’re a team…..a tired team on occasion.  Finally that night, things calmed down and all was well when Aaron went to bed.  We can only pray that something we said stuck in that brain of his.  We know we have to keep trying.

Aaron had times of showing compassion this week, which always makes us very happy because typically Aaron is all about Aaron.  He told us that he gave one of his bean burritos to Jennifer, his friend at his day group.  And he gave her his water, according to him.  He wanted to take some zucchini from our garden to Barb, which he did.  He’s been known to sneak produce out of the house in one of his deep pockets, but this time he did it with my permission.  He does sometimes love to share. 

When we talked to Andrea later in the week, he was very concerned to find out that she was sick.  She ended up having pneumonia in both lungs!  He wanted to talk to her, but I resisted because I knew she really didn’t feel like it.  But Aaron asked her right away if he gave her his sickness when we visited her in Houston, and he showed real concern for her.  That was sweet to see. 

On Friday morning, I had to go to the air base for some routine blood work for my yearly physical.  I left early, but the lab was busy and so it took me longer to get home than I had planned.  I knew when Aaron called me, sounding very down and sluggish, that we were in trouble.  It was confirmed when he said he didn’t want to go to Paradigm.  I got home to find an angry Aaron, but a dressed Aaron.  You see, his routine was all messed up because I hadn’t been at the house.  He slept a little later than usual, had to get his own coffee, and was just generally unhappy about the whole state of affairs.  But of all things, miracles happen, and Aaron ended up going to his day group willingly.  Another crisis avoided! 

Then came seizures on Friday night/Saturday morning.  Just three seizures and not as severe as they sometimes are, but still sad to see.  Aaron’s body gets jerked around physically, that’s for sure.  He slept later than usual yesterday morning, but woke up fully functional.  That was a relief!  Yet he was grouchy because of the seizures and not feeling well, so I had to tread lightly for awhile.  Just another example of the many bodies of Aaron.

He made me laugh this week, as he often does……some days more than others.  One morning I told him it was time to leave, but he told me to wait a minute.  I repeated that we needed to go and he told me again that he was almost done…..just wait a minute.  I looked in his room and found him, of course, watching the movie credits from the movie he just finished.  He was rubbing his hands together, a sign of delight, and as always I laughed.  The credits cannot be interrupted, so I waited until he was down to the very last word and then he happily turned the DVD off and away we went. 

 
Then today, as we watched racing and he tried to catch a glimpse of Andrew, he ended up sitting like this.

 

Yes, that’s our cushioned ottoman lid on his head.  Good balance, don’t you think?

But perhaps the sweetest thing was when we sat down for lunch today.  He said he would pray, which he doesn’t often like to do.  He almost always says two phrases when he prays.  The phrases may vary, but there are almost always just two.  Short and sweet.  So we held hands and Aaron said, “Lord, thank you for this food.”  He paused, then continued.

“Please help me feel…..I mean, help ANDREA feel better.  Amen.”

That was his sweet body……and a sweet moment to cherish. 

One Minute Matters

The last blog I wrote told about Aaron’s difficulty in returning to his routine.  He had a very difficult three days as he adjusted to leaving the house every morning and going back to his day group.  Monday wasn’t too bad, Tuesday was awful, and Wednesday was very “iffy.”  I wrote about Tuesday……the slumped shoulders, sitting in the rocks, actually throwing some rocks, etc.  On Wednesday, I went into the building ahead of Aaron because he said he wasn’t getting out of the van.  I just got out and headed inside, and so he followed me.  He talked to Barb, who knows how to calm him, but he kept saying he wasn’t going to stay.  Barb said she would just drive Aaron in her truck over to where Bryan was working on a house, so Aaron walked outside with her, all the while saying that he was NOT staying at Paradigm.  I just stayed mostly quiet.  Aaron stood at our van, but finally went with Barb and then had a good day.  I drove away just asking God for wisdom, patience, and strength.  We ask God often for those three things when it comes to Aaron.

Later Barb and I texted.  She said Aaron was totally fine the rest of the day.  I told her that I think he is testing me, and she said that they would do everything they could to see that I passed the test.  And the staff at Paradigm truly does just that.  They know Aaron, and they know how to work with him….how to calm him……how to understand what’s behind his actions, when they can understand.  Sometimes no one can figure him out. 

Bryan and Aaron worked together all week on different house projects…..residential settings that Paradigm manages.  Aaron was quite proud of the fact that he helped Bryan put tile down on a floor, but on Thursday he brought a piece of the “tile” home and we saw that it was actually laminate flooring.  It wasn’t long before Aaron had given me a resounding whack on my rear with his little plank, and he got a good lecture from me.  I learned the next day that he had done the same to Barb.  He just never seems to get it…..rarely is able to control those impulses.

 
Anyway, he came home on Thursday all smiles as he couldn’t wait to show me what Bryan had fixed for Aaron to wear around his head as they worked.  It was fun to see Aaron smiling and so happy.  He went from his slumped shoulders on Tuesday:

 

To a face full of smiles on Thursday:

 

Today he said, “Mom, Bryan told me that I’m his number one man.”

“Oh, Aaron,” I replied.  “That is such a nice thing for Bryan to say!”

“I think it’s weird,” Aaron flatly replied……which made me laugh……which Aaron also thought was weird. 

He’s so funny.  Last night he was watching an alien movie in his room, having a blast.  But when he came downstairs and saw a sweet family scene on the movie “McFarland,” he said, “That’s weird!”  So for Bryan to call him his number one man seems weird to Aaron, but deep down I think Aaron loves it.  He just doesn’t know how to convey that sentiment like we do.

Just like he doesn’t know how to handle his frustrations over returning to real life after a month away.  Instead of sitting and having a conversation about it, he has to yell and threaten and cry and throw rocks.  Then our frustrations mount, and we have to be so careful how we handle it.  I’ll admit that it gets old.  Gary and I were talking about it last night.  We really don’t know what a “normal” life is at our age.  Other parents of children, young or adult, with behavior issues know exactly what I mean.  Yet there aren’t many great alternatives, and we do love Aaron.  God gave him to us, so we just take one day at a time.  And we are ever thankful for people, like the staff at Paradigm, who work so well with Aaron and help us on this journey.

We see progress with Aaron, but his core issues will probably always be the same.  I’ve always tried to see the humor in so many things that he says and does.  Sometimes I don’t have to look hard, for he truly is so funny so often.  On Friday, our electricity went off a couple times, so Aaron’s clock by his bed was messed up.  As I was helping him get everything ready for bed, he asked me if I would set his clock.  I told him to look at his satellite clock beside his desk and tell me the exact time so that I could get it right on his night stand clock.

“OK, Mom.  It’s 10:05,” he said.

So I punched the buttons for the hour.  Then I did the same for the minutes. 

“It’s 10:06 now, Mom!” he told me.

And wouldn’t you know, I punched just one too many and the clock said 10:07.

“Oh well,” I said.  “One minute won’t matter, Aaron.”

Who was I kidding?!  And I knew it.

He just stood there staring at his clock.  And I knew that one minute did matter.  It mattered very much to Aaron.  He can halfway brush his teeth.  He can wear the same pair of socks for days in a row, seriously, if I don’t catch him.  But one minute too fast on his clock is not tolerable.  Not at all.

“No,” he replied.  “I want it at 10:06.”

So I hurried and re-punched the buttons, but by then it was nearly 10:07.

“Wait,” Aaron said. 

And he began counting the seconds.

“48…49….50….51…” he continued.

And when he said “60!” and the time was now officially 10:07, I punched the little button very carefully, ONE time, and then all was well.  It was 10:07 on his nightstand clock and on his satellite clock.  They were synced correctly, and now Aaron could go to bed.

If only he would sync his life to ours as easily!  If we could just punch a button here and a button there, and make us all line up together in harmony…..wouldn’t that be awesome?

But I know if we did that, then we would also miss a lot along the way.  Like I told Gary last night, even in the midst of our tiredness and sometimes deep frustrations, we really can look at many amazing facets of Aaron.  We just need to remind ourselves of that on some days when no matter how many buttons we push, things just don’t line up the way we want. 

Honestly, on many days we end up syncing ourselves to Aaron.  We can pretty well predict how he’ll react to different situations, and what he’ll say.  He doesn’t sync himself to us nearly as well, but when he does it’s cause for celebration.  Like how he made it through this week and the expectations that were made of him.  It was a huge accomplishment for Aaron!

But tomorrow morning may be another story.  I need to remember that ONE minute.

48….49….50…..51…..

The Way Aaron Wants Things

Transition:  a passage from one state, stage, subject, or place to another; CHANGE.  (Webster’s Ninth New Collegiate Dictionary)

From Online Asperger’s Syndrome Information and Support (O.A.S.I.S.):  Individuals with Asperger’s are easily overwhelmed by minimal change…..  MINIMIZE TRANSITIONS.

Guess what we are in the middle of with Aaron?

CHANGE!!

TRANSITION!!

And we cannot minimize this transition period.  Our motto, and Paradigm’s motto, this week is “Hang on, breathe deep, and hope and pray for the best.”

Aaron returned to his day group, Paradigm, yesterday – almost a month to the day after he entered the hospital for a week.  After returning home from the hospital, he had doctor appointments…..he had lots of healing to do……lots of strength that needed to return…..and setbacks, like his rash last week that needed to be treated.  We also took a trip to Houston over the Fourth of July, spending five fun days with Andrea and on the road.  Life was good for Aaron, especially after he started feeling better.  He loves nothing more than staying home with his computer and movies and games and television.  Throw in an occasional shopping trip, eating out or bringing in take-out, and what’s not to like?

I’ll tell you what’s not to like.  Returning to the real world, to a schedule, and to Paradigm is what’s not to like…..for Aaron.

Transition….big time!

One evening I was in Aaron’s room as he got ready for bed.  I had helped with putting Mr. Snake, Mr. Skunk, and Mr. Frog in his bed.  Every bit of each stuffed animal must be just perfect, placed exactly where Aaron’s unwritten rules say they should go.  I thought I had them perfect, but they were just a tiny bit “off” and so Aaron pulled back the covers I had pulled up, and he rearranged them just the very littlest bit.

I chuckled at this.  Then Aaron said, “I want things the way I want them.”

 
No truer words were ever spoken!  This describes Aaron better than any concise statement I could have ever tried to formulate.

Aaron wants things the way he wants them.  I guess we all do, really.  But for Aaron, as with so many autistic individuals, the desire is carried to the extreme at times.  Many times, in many ways.  It’s very difficult to dissuade Aaron from wanting things the way he wants them, too.  And to accept the fact that life doesn’t always allow him to have things the way he wants them. 

Staying home has always been the way Aaron wants his life to work.  So being home for all these weeks was just the best case scenario for our Aaron.  Going back to Paradigm is the worst thing, in his mind, that could have happened.  And it happened.  It’s happening now.  And we are hanging on for the ride.

Yesterday wasn’t bad.  Aaron was a little reluctant about going, but he and I walked into Paradigm with Aaron beaming.  He loved seeing Barb and Brandy, and later seeing Bryan.  He loved his friends saying, “Hey Aaron!  We missed you!”  He loved telling them about his trip to Houston.  He loved going with Bryan to help lay tile at a Paradigm house, and eating lunch at Wendy’s.  When he came home, he told me all about his day.  He showed me his receipt from Wendy’s.  He pulled out a business card from his pocket that he had gotten at a building supply store with Bryan, and he added it to his other business cards that he has confiscated over the years.  He also pulled out of his other pocket some change that he said he found on the floor at Paradigm.  He listened to my skeptical response.  He pulled out his billfold.  Finally his pockets were empty, and he went happily about his evening.

But today…..today wasn’t good.  Aaron didn’t want to go this morning.  He made that known at home by continually telling me that he wasn’t going today.  Finally he got in the van, and he was fairly pleasant on the way to Paradigm, although still saying that he didn’t want to go.  I’ve talked to him about a special meal on Friday to celebrate his first return week to Paradigm, but he told me this morning that he didn’t care about a special meal.

It’s best when Aaron is like this to just keep my affect as low as possible.  If I react strongly, then he will react even stronger.  Trust me….I have learned this.  So the less I talk, the better.  The less I react, the better.  I may tell him I’m sorry, or that I understand, but trying to lecture or to make a point is useless.  When Aaron is in his “I want things the way I want them” mood, then it’s best to be as quiet as possible.

I pulled up to Paradigm.  Aaron crossed his arms and refused to budge.  I calmly urged him to go on in and start his day.  After a short time, he opened the door and got out, but his face was a picture of real anger.  He slammed the van door, and then walked with sloping shoulders, slowly, up the sidewalk.  He looked like the weight of the world was on his young shoulders.  Then he stopped, and sat down in the rocks beside the sidewalk.  Melinda was just going in, so she stopped and talked to Aaron.  I decided to drive away as Melinda and I waved.

I guess that she talked to Aaron awhile, and then Brandy came out to talk to him.  She sat in the rocks with him, on his level, and he cried…..a sure sign of great frustration.  They went on a drive and Aaron calmed.  Bryan came back to Paradigm to pick Aaron up and take him to help him lay tile again, I assume.  Aaron enjoys helping Bryan with house jobs.  And I’m thankful for the gentle care that the staff at Paradigm gives to Aaron.  Their understanding, and the fact that they “get” Aaron, is a great relief to us. 

I hope that Aaron’s having a good day.  I suspect that he’ll come home happy again, full of talk of his day.  I don’t know what tomorrow will hold when it comes time to walk out the door again and face another day. 

Aaron’s greatest challenge in life is to learn how to process change…..how to transition from one way to another way.  Sometimes he surprises us.  In Houston, when we would tell him of our day’s plans, he would automatically say, “No!”  No to the beach…..no to the boat ride…..no to shopping, although we totally expected that.  But it was easier for Aaron to want to stay in his comfortable world, watching his movies at Andrea’s apartment and playing with her dogs. 

Yet when he went to the beach he loved it.  He loved the boat ride.  He endured the shopping.  And of course, he loved eating out!  I’ve reminded him of how he said no to things, and then how he really enjoyed those things once he did them.  This fact seems to mean nothing to Aaron now.  His mind is closed to this idea. 

He wants things the way he wants them.

And our job is to be patient, to not give in to his wants, to not lose our cool, and to ask God for lots of wisdom. 

If only Aaron wanted things the way I want them!! 

Yeah, I laughed at that, too.