Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

Some Special Heroes

 

Hero:  One endowed with great strength or ability; one that shows great courage.

 

Don’t quit reading.  I promise I’m not going to launch off into my opinion of Hollywood’s latest hero worship fiasco.  Besides, those of you who know me know what I think about it….and I certainly don’t need to add my voice to the many voices who have so adequately expressed my views.

 

I was going to write this blog anyway, someday, but now I have many reasons to do so.  And yes, a big reason is the messed up qualities that our culture is trying to cram down our throats…..not only the person this week but the people every day and every week that they try to convince us are worthy to be called heroes.

 

Another reason I want to write about some heroes I know is because of a conversation I had this morning with Barb, a manager at Paradigm and one of the kindest people I have ever known.  She told me of a business owner across the street from Paradigm, Aaron’s day group.  This man is not a nice neighbor to Paradigm.  One day, as special needs clients were outside on Paradigm property, he told the Paradigm staff that they could “take their circus somewhere else.”

 

Someone hold me back!  A circus?!  Excuse me??

 

That poor man.  He has no idea that he has heroes across the street from him every weekday.  I looked around inside Paradigm today and I saw amazing young adults.  Shauna gave me a huge smile from her wheelchair.  Jessica waved at me and gave me a beautiful smile.  Paul gave me a hug.

 

For years I have been surrounded by heroes…..by individuals who have extreme challenges, but display extreme strength as well.  How often do we “normal” people stop to think about what these special people face every day of their lives?

 

Each of them has a diagnosis, but their diagnosis does not define who they really are.  There is Epilepsy, Doose Syndrome, Autism, Prader Willi Syndrome, Spina Bifida, Muscular Dystropy, blood disorders, Downs Syndrome, Developmentally Delayed…..

 

But my friends are real people with real lives.  They were named by their parents, who love them so deeply.
Jennifer
Darien

 


Johannes

 

 

Elijah
Christoph
Alyssa
Aaron
Nicholas
Bethany
Rosa
Kaleb
They each face, or have faced, more physical challenges than I have ever seen in my own life.  Could I ever deal with even a fraction of what they handle, sometimes every day?
Seizures.

 

Taking medicines every day.

 

Facing the side effects of all the meds they take, which include being sleepy, dizzy, gaining weight, mood swings, organ damage, bone loss, etc.

 

Surgeries, some extreme.

 

Multiple doctor appointments.

 

Test, tests, and more tests.

Fear of infection.

 

This is just a very partial list of what they routinely encounter.  They pick themselves up, every day, and they live.  They live their lives to the fullest.  Would I be able to function after having one seizure, or would I just go to bed for the rest of the day?  How do some of them do it after having multiple seizures, sometimes daily multiple seizures?

 

But there is much more than just the physical part of their struggles.  What would it be like to face the social aspects of living life every day with a disability or a diagnosis that hindered you from living like your peers?

 

Having to go to special classes at school.

 

Having an IEP.

 

Not going to college.

 

Wanting to drive but not being able to get your license.

 

Having seizures in public.

 

Looking different, possibly.

 

Being bullied or teased.

 

Not having filters, so you say things that others don’t like or understand.

 

Not having close friends, or any friends at all. 

 

Not being invited to go out with your peers.

 

But our kids keep on going.  Somehow they manage to not only live, but to laugh and to grow and to thrive the best they can.  They jump over the challenges and push ahead, every single day.

 

I’ve watched Aaron on a seizure day as he still tries to smile, to get out of bed or off the couch, and to continue his day as best he can.  I’ve seen him go back to hard situations, like after he’s had a meltdown, and face his staff and friends again.  I’ve heard him say that he wished he could drive as he watched Andrew pull his truck into the driveway.  It’s sad to understand that he can’t even go out on his own to get a hamburger without depending on someone to take him.  I’ve been deeply touched as he watched his brother and sister grow and move on with life.  It broke my heart when he came home from his special needs school one day and said, “Mom, I noticed that all those kids there have problems.  What are my problems?”

 

And I want to say, “Aaron, you don’t have problems.  You have challenges, yes, but you have overcome them every day of your life in ways I’m not sure I could.  You are strong, and you are tough, and you are brave!”

 

You’re a HERO!!

 

And so are each of these wonderful young people that I’ve mentioned today.  They are each full of courage and strength to live their days as fully as they can.  They wouldn’t think of themselves as heroes, but I do!

And they don’t belong to a circus!!

 

They belong to a unique group of Super Heroes!  They should be on magazine covers and cereal boxes and talked about on the news!!

 

But they probably won’t be.  So look around you every day and find the true heroes among you.  Smile at them, love them, encourage their families, reach out to them when you can, and pray for them.

I am very thankful to know so many heroes….TRUE heroes that fit that definition perfectly.

And someday I’ll see two other heroes that have already gone to heaven.

 

Ben.

 

 
 
And Katy.

 

They live on in our hearts, and especially in the hearts of those who knew them best.

 

Don’t listen to silly Hollywood stories and look at ridiculous magazine covers to find a hero.

 

I guarantee there are many special heroes around you every day who could be your example of strength and courage.

 

I’m so blessed to live with one!  And to know many others!

 

 

 

 

Lights On. Lights Off.

There is something laying on the floor of our garage right now.  It’s a baggie that contains some coins….some coins that Aaron needed to take to his day group today.  The bag is on the floor of the garage because Aaron put it there.  Well, he didn’t just put it there.  He threw the bag down on the floor.  He threw the bag down on the floor because he was angry.  He was angry because he didn’t want to go to Paradigm today.  He didn’t want to go to Paradigm today because of something that happened there on Friday.  He didn’t have to go yesterday because of a doctor appointment and then a fun day with me…..so he doesn’t want to go today, either.  Are you following me?

It’s how we have to follow Aaron.  Living with Aaron means living with autism, and living with autism means that we often follow Aaron as he goes down one trail, switches to another, and back tracks to the first one, but is soon off on a wild tangent, and off we go.  Living with Aaron and living with autism means that we must understand, as best we can, the things that Aaron can’t easily or sometimes ever express.  At times it’s a fascinating journey.  At times it’s a funny journey.  And at other times, it’s a very frustrating journey.  It’s really wild when all those emotions are mixed up into one ball.  Boy, can we bounce from one to the other!

Anyway, back to the bag of coins on our garage floor.  Aaron was awake a little after 5:00 this morning.  I heard him go to the bathroom, but he never went back to sleep.  He was in the kitchen watching me scramble Gary’s eggs well before 6:00.  He ate some sausage and I took his coffee to his room.  He came several times and stood behind my chair as I had my morning quiet time, sometimes talking and sometimes just staring.  He showered and took his pills.  And just under the current of his swirling mind, I knew what was there.  He didn’t want to go to Paradigm.  But when he saw that I was really going forward with our morning routine, like cleaning his glasses and handing him his wallet, he was not happy anymore.  On the way to the van, he turned and threw the bag of coins on the floor.  He left them there as we got into the van, and I am leaving them there for him to pick up when he comes home.  But he went to Paradigm, was met by the manager who rubbed his back and calmed him down (I hope), and hopefully will come home with happy stories.  And he will pick up the bag in the garage, because he needs to do that.  It’s a small lesson, but a lesson regardless.
 

Sometimes we don’t necessarily understand what makes Aaron do certain things, but we know that these actions are set in stone.  We are fighting a losing battle to try to change them.  Like his sausage this morning.  Aaron got his own silverware because he knew that Mom wouldn’t do it correctly.  I knew what he was thinking as he reached into the drawer and pulled out his fork but also a knife and a spoon.  Who needs a spoon for eating sausage?  Aaron does.  There’s no need to make a big deal about it or try to make him put it back.  Why make it an issue?

And the family room lights.  I don’t turn them on in the morning because we’re not sitting in there and so we don’t need the lights on, right?  But every time Aaron walks through that room, headed for the kitchen, he flips the lights on.  I flip them off at the first opportunity.  He flips them back on.  Lights on.  Lights off.

This morning he walked into the kitchen.  Lights on.

I soon took his coffee upstairs.  Lights off.

He followed behind me.  Lights on.

I came back downstairs.  Lights off.

He came behind me again.  Lights on.

I carried my own things upstairs.  Lights off.

He finished taking his pills and then came upstairs.  Lights on.

Sigh.

On the days that he is home and wants to eat lunch, he will eat only if it’s 12:00 or shortly after.  He will not eat at any time before 12:00.  Not 11:48.  Not 11:55.  Not even 11:59!!!!  And if I ask him what time he wants to eat, he replies, “At the time for lunch!”  As if Mom is a little thick headed, you know.

One day recently he said, “Mom, I’m sleepy.  I think I’ll take a nap at 12:00.”

I said, mistakenly, “Well, it’s almost 12:00 now.  You could go ahead and lay down.”

“But it’s 11:53!!!” he exclaimed.  “It’s not 12:00!”

Well, of course.  Whatever was I thinking?!

Wheel of Fortune is another one.  It starts at 6:30, so Aaron has decided that he will turn the television on at 6:28.  Again, not at 6:25 or 6:26 or even 6:27.  No.  Only….ONLY……6:28.  He will stand in front of the TV, literally staring at the clock, until it is SIX…TWENTY…..EIGHT!!!! 

It actually makes Gary and me smile. 

Movie credits.  Oh yes, movie credits.  When Aaron watches a movie in his room, he watches the entire movie.  But to Aaron, the entire movie means from the moment the DVD begins until the moment the DVD is over…..completely over.  That means watching the credits…..every single bit of the credits, until there are no more credits to watch.  He stares at them intently, too. 

 
So yesterday, after Aaron’s doctor appointment and after eating lunch at Abuelo’s, we went to see San Andreas.  He saw it at the theater on Friday, but he really wanted to see it with me.  Yesterday worked out perfectly for that.  For one reason, the theater wasn’t full at all and so I wasn’t as stressed about Aaron’s noises and rubbing his hands together when he got excited.  And this is a VERY exciting movie.  We had a good time, and when the movie was over I could tell that Aaron didn’t want to get up.  Why? 

Really?  Surely you know.  The credits!!  Aaron would have gotten up if I had insisted, but I knew that watching San Andreas in the way that mattered to Aaron meant watching it to the bitter end…..which meant to the very long, last credit.  Everyone had left the theater, and the cleaning crew stood in the back waiting on us to be finished, but Aaron and I did it.  We watched every single line of every single credit for every single miniscule part of San Andreas.  Aaron put his hands on the back of the seat in front of him, enthralled at getting to watch big screen credits all the way to the end.

 
 
This is what we often do as parents of Aaron, and as we live with autism.  I entered Aaron’s world at that moment.  It was actually funny and endearing.  We left the theater laughing, and I laughed even more when Aaron bent over as he rubbed his hands together furiously, asking the ticket taker why San Andreas was “fictinous,” as Aaron says.  The stiff, unsmiling ticket taker was rather put out at this odd situation and made some curt comment, which totally didn’t faze Aaron.  That poor guy missed out on a wonderful opportunity.

I’m learning more and more to enjoy those opportunities to enter Aaron’s mind and to follow him on his paths. I am blessed to partake of Aaron’s world on most days, but there are many times when it’s hard and frustrating.  Which brings me back to the bag on the garage floor.  Hopefully, as he picks the bag up off the floor, Aaron will talk to me about what was really bothering him.  Hopefully, he will learn that he needs to correct his own wrong actions.  Until the next time he takes off down that trail of frustration, but we’ll deal with that as well.

Lights on.

Lights off.

 

 

Something About Subway

For some reason, whenever I take Aaron to Subway, I find that it’s quite an experience.  Actually, I’m the one having the experiences as I watch Aaron and listen to Aaron and try to hush Aaron and so forth.  What is it with Subway?  Maybe because it takes so long to order there if anyone is in front of us, and if Aaron has time on his hands, there’s no telling what will happen. 

Aaron told me after one of our trips, when he was with Zach, that they had gotten a sub at Subway.  “Subway is a nutritious food area,” he told me.  So earlier this week he asked me if we could have a sub on Friday night, and I told him that we would do this if he had a good week.  So seeing that he had a good week, and seeing that Aaron never forgets any prospect of food, he and I were off to Subway shortly after he came home today.

I was hoping we were early enough to be there alone, with no one in front of us.  No such luck.  There was a mom with two children already there, just placing their orders.  I told Aaron to slow down, that we would have to wait our turn, and I gave him the usual “Shhh” sign as he began talking loudly.  It took several “shhhh’s” before he finally halfway whispered.  I was trying to get Aaron to go ahead and tell me the kind of bread he wanted, and the kind of sub, but he said he wanted to wait until we got up to the counter……meaning that he would take forever to decide as he tried to find a picture to match his sandwich choice, identify the proper bread, talk about the cheese, etc. 

In order to help locate the exact meat he wanted, he started edging closer to the family in front of us, craning his neck to look around their shoulders.  I quietly motioned for him to stand back.  He doesn’t worry much about other’s personal space and he definitely doesn’t notice their wary stares.  I whispered for him to come back and stand beside me, but Aaron didn’t follow my whispering lead at all. 

“Should I tell them they’re in the way?” he asked in his normal voice…..which is too loud.  He also doesn’t notice my looks of frustration or embarrassment. 

“No, Aaron,” I told him again in a whisper.  “They’re not in the way.  You are.” 

But Aaron was already intent on listening to the mother as she requested the  veggies for her sub.  “She wants pickles!” Aaron told me, not in a whisper.  “Who would want pickles?!” he continued.

How many ways can I tell him to hush, I wondered?

At this point, Aaron was getting a little frustrated at the wait.  He saw another employee behind the counter, but this young man was working on a malfunctioning piece of equipment. 

“Hello?” Aaron blurted out.  So again I told Aaron to be quiet.

“I’m trying to get his attention,” Aaron explained, as I explained to him that this young man was not making subs right now. 

Finally it was our turn.  I had already figured out that Aaron wanted ham, but when I let him do the ordering, he just pointed to the meats and said, “I want that one.”  Like this poor girl would know which one Aaron wanted?  And he hadn’t even told her the bread choice yet.  So with some patience from her, and from me, Aaron finally began his order correctly.  She laid Aaron’s sub aside as she turned to take my order before beginning the veggies.

“Wait!” Aaron said.  “I want tomatoes and….” he started to say, but I told him to wait.  So he tried to be patient as I got Gary’s sub ordered, and then mine.  Aaron watched the nice girl spread the Gouda cheese on mine, but he couldn’t resist giving his opinion.

“That looks like barf!” he told us.  And I was glad that no one was behind us.

Aaron finally got to order his veggies, the way he always does. 

“Can I have tomatoes?”

“Can I have lettuce?”

“Can I have onions?”

“Can I have cucumbers?”

And he told her that he wanted mayonnaise.  Yay!  He didn’t call it white mustard this time!

I finished the rest of our order.  “I’ll take spinach, lettuce, tomatoes…..Aaron, don’t press the debit machine buttons……jalepenos, cucumbers……Aaron, don’t mess with the tea dispenser…….black olives, onions……Aaron, I said don’t press the debit machine buttons……and mayonnaise and a little oil.”

Aaron decided to whistle then…..a song we had just listened to on the radio.  The girl guessed that he was whistling The Lion Sleeps Tonight, which made Aaron very happy and which reminded him that he should tell her about the movie he had been to see today with his day group.

“Have you seen San Andreas?!” he excitedly asked her.  Except that Aaron pronounces the word “Andreas” the way he says his sister’s name, so it comes out as if he’s talking about San Andrea’s.  Our server was confused, but Aaron wasn’t, so he launched right into as many movie details as he could manage while she finished wrapping our sandwiches.  He bent over and rubbed his hands together, which only added to the comedy of this whole situation, as he breathlessly told of falling buildings and cracks in the earth and the lines on the earthquake machine going WAY up!  I finally got him to quit talking when I told him that he shouldn’t tell her all about the movie before she saw it, and he laughed and agreed and somewhat calmed down as I paid for our subs…..finally.

We said goodbye and headed for the door.  I thought we were nearly ready to escape as I pushed it open, and then realized that Aaron was not behind me.  And there he was, bending over beside the trash can, picking something up off the floor.  He sure can move fast for a big guy.

I could only imagine what it was that he was now putting in his hand, but as he stood I saw that it was only someone’s receipt.  He had already turned and was headed back to the front when I stopped him. 

“But I thought they wanted it,” he explained as I told him to throw it away.  He reluctantly tossed the receipt in the trash, sorry that he couldn’t do a good deed.  And probably especially sorry that he couldn’t once again talk to the nice girl who had already listened to far more than she had bargained for, I’m sure. 

Whew!  That was over!  And I smiled as I thought of Aaron saying, “Hello?” to the young man behind the counter, and then explaining that he was just trying to get his attention. 

Little does Aaron know that he doesn’t have to TRY to get anyone’s attention.  It comes pretty natural, trust me!

The Pieces of a Beautiful Life

Two weeks ago, Gary and I were finishing the last leg of our drive to West Virginia as we traveled home for my mother’s funeral.  Has it just been barely over two weeks ago that she breathed her last breath?  So much has been packed into this short time that it seems like she left us much longer ago.  That’s how my mother lived her life, though.  Like my brother said at her funeral, Mom squeezed every bit of opportunity out of each day that she lived.  So much was packed into her life…..so much that will impact so many for eternity.
As Bob and Jan, and John and Jeanie, planned Mom’s funeral, they incorporated two very sweet and personal elements into the service.  Jeanie asked each of the grandchildren to write down their memories of their grandmother.  At her funeral, Jimmy read every word that had been written.  It was a very moving and sometimes humorous part of the service.  Then Jan asked each of us to bring our quilts that Mom had made us.  Each hand stitched quilt that we brought was hung over the railings at the front of the church, adding a beautiful background as we remembered our mother.
 
Something really stood out to me as I listened to the grandchildren’s memories being read.  It’s the same thing that I noticed during her visitation at the funeral home the night before her funeral.  That night, we stood in line for nearly three hours as person after person hugged us and told us of what our mother had meant to them.  Most of their stories were fairly simple.  It wasn’t that Mom had done earth shattering acts of great note.  She wasn’t interviewed by the newspapers, seen on television, or given big awards for her acts of kindness.
So what did people talk to us about as they shared my mother’s impact on their lives?  It was her service to them, her love, expressed in so many ways.  It was meals she cooked, her home she opened to so many, stockings she knitted, clothes she sewed, miniature roses she delivered in Cracker Barrel syrup bottles, boiled custard that she cooked because a friend loved it, sending out missionary prayer letters, making dozens of quilts for others, and so much more.
It was her great sense of humor….her ability to lighten any situation with an attitude of light heartedness that was often amazing.  It was her word fitly spoken to so many, especially to those who had messed up and made poor decisions.  She comforted without judging, and extended help where others might have looked the other way.  Story after story we have heard since Mom died.  What a balm to our hurting hearts!
The grandchildren’s memories were more of the same, on a more personal level.  Again, what is striking is that no one mentioned my mother’s education or her job.  Not that this isn’t important, because it certainly was a great accomplishment for her to have a Master’s degree and to have a supervisory position with the State Board of Education.  Yet with all of her educational goals that she met and with her very responsible job, my mother maintained our home and our family in an incredible way.
It was, again, the seemingly small acts that all the grandchildren remembered the most.  Guess what was mentioned most often by her grandchildren?  It was the Cheerios that she kept in the coffee table drawer in the living room.  So many of them talked about that memory and of how much fun it was to go to their house, pull out that drawer as a little child, and eat as many Cheerios as they wanted.  Other memories were of the toys, the laughter, sitting on the front porch, all the play time in the yard, her cooking, gardening, sewing, and her unconditional love.  It was how she filled her home with joy and filled their lives with personal touches for each grandchild.
In her memories of her grandmother, Andrea wrote, “I remember how she patiently showed me how she pinned her fabric together in preparation to sew her gorgeous quilts by hand.”  As I sat in the church during mother’s funeral service, I looked at the quilts that we had hung on those railings.  Each one is full of hundreds of fabric pieces, placed together in ways that make a gorgeous design.  When you step back and look at the finished project, you see how each piece combines to make a perfectly beautiful work of art.
So it is with the life that Mom lived.  Each act of love that was remembered and many that have been forgotten, have all fit together to produce a beautiful life.  It’s the handiwork of God in our mother’s life that has blessed and profited so many of us over the 88 years that she lived.  Her life was a pattern that I want to follow.  A pattern of service and kindness that means more to people that any public acclaim ever will or could produce.
Like she so often sang:
          I’d rather have Jesus than men’s applause.
          I’d rather be faithful to His dear cause.
          I’d rather have Jesus than world wide things
          I’d rather be true to His holy name.
 
I’ll be learning lessons from the design of my mother’s life for the rest of mine, I’m sure.

Pipes and Pipe Parts

I never know when I hear Aaron burst through the door at the end of his day, as he arrives home from his day group, just what all I will hear or what I will see.  He nearly always launches right in to some detail of his day that he just can’t wait to tell me about.  Sometimes it’s a funny piece of information.  Sometimes it’s about an event that excites Aaron.  Sometimes it’s distressing and not so exciting or funny.  Sometimes he frustrates me as he tells of something he has said or done that is inappropriate.  We certainly never know what a day will hold with Aaron.

While I may not know what a day will hold, I do know that often Aaron will be holding something in his hands.  Or he will be digging into his pocket for an item that he has found somewhere during his time away from home.  I often question how he came upon these various items.  Did he really find them?  Did he take them when he shouldn’t?  One thing for certain is that when Aaron spies something on the ground, especially, he will stuff it in his pocket in a flash.  We have had him take lots of items back to Paradigm, his day group.  Things we knew that had to belong to someone, or items that he had taken off of Barb’s desk, for instance.  Post-it notes…….various cords that belong to devices…….notepads……….highlighters. 

A few weeks ago, the day before Gary and I were leaving for a trip to see Andrea and Andrew in Houston, I heard the door slam when Aaron came home.  He thumped loudly up the stairs.  “Mom?” he loudly called.  “Where are you?”

He found me cleaning his bathroom.  As he walked in the bathroom door, he thrust a flower toward me and unceremoniously said, “Here!”  I found myself holding an Iris……a very suspicious Iris…..as I wondered just where he picked it and how much trouble did he get into and who was mad at him for picking their flower. 
 

I cautiously thanked him for the flower, and then asked him where he got it.  “I tore it off the plant,” he casually answered.

Umm, yes Aaron, that’s pretty obvious.  What plant?

So he told me that there were flowers growing at a house that Paradigm owns…..a residential setting where he often goes with Bryan to work on maintenance issues.  And I realized that Bryan knew about Aaron tearing off the plant, and that Aaron didn’t rip it off of some flowers growing outside of a business or whatever, and that maybe it was sort of all right.  And what could I do but put it in a glass of water while Aaron proudly watched?  He was trying to tell me that he would miss me while I was gone to Houston, so he tore the Iris off the plant for me.  It was a mixed blessing, I guess.  One that he was quite proud to have accomplished.

He recently came home carrying this:

 

Thankfully he and Bryan had stopped at a yard sale, so this was a legitimate purchase.  So he said….

And there was the eye ball.  I have no idea who might be missing an eye ball.

 

He finds money.  This, thankfully, was on our driveway so I didn’t have to worry about where he got it.

 

We’ve had some behavior issues with Aaron at his day group.  It came to a head when I returned home from our trip to attend my mother’s funeral.  No time is a good time to deal with these things, but to be forced to handle his emotional needs when mine were so raw was difficult.  I made some changes in his transportation, for one thing, and he is much happier.  He’s also much happier because of something we never dreamed.

Work.  He’s been helping Bryan, one of the Paradigm staff, work on residential homes that Paradigm manages.  Now this week they have been working on a new building that Paradigm bought.  Aaron rushed in the house to find me the other day.  He held his hand up to show me this:
 

“I worked in a place where there were pipes and pipe parts!!” he exclaimed.  So of course he picked up some of the pipe parts, slipped them on his fingers, and couldn’t wait to rush home to show me.  Then he showed Gary later, repeating the story with gusto.

“I like being with Bryan in that place where there are pipes!” he told us.  Who would have thought?

The next day he happily held up his hands yet again.

 

More pipe parts!!  “Bryan is working in that pipe place again!” he said.  And there was more!  I was thankful that Barb had talked to me on the phone before Aaron got home.  She told me that Aaron would be bringing some money home, and that no, he had not stolen it!  HaHa!  She knew exactly what I would assume.  Paradigm paid Aaron for the hard work he did that day.

After Aaron held up his fingers full of pipe parts, he dug in his pocket and pulled out some money.  It was a $10 bill!  He was so proud.  He told Andrea all about it later on the phone.  You would think he had made a thousand dollars.  The effect was just the same, regardless of the money amount.

Pride.  Aaron is proud of the work that he is doing, and proud to be helping in a tangible way.  He is proud of the praise he is receiving.  And like Andrea said, he feels like an adult who is doing real adult work.  Again, who would have thought?  But it does make sense, doesn’t it?  Aaron has the same needs that we have.  He needs to feel worthwhile and productive.

Plus he came home very dirty that day when his fingers were so full of pipe parts.  His face and arms were dirty, as were his clothes.  He actually agreed to take a shower at that time of day instead of waiting until the following morning.  Wonders never cease! 

Well, what made him seal the decision to take a shower in the late afternoon, totally out of his routine, was this comment that I made. 

Aaron, if you shower now, you won’t have to shower in the morning.

Bingo!!  His eyes lit up.  “I won’t have to shower in the morning?” he asked in disbelief.  No shower when he’s groggy.  No shower when we’re in a hurry to leave.  No shower when he’d rather drink his coffee and chill on his computer. 

So far, so good.  He has showered before supper for two whole days.  He is delighted not to shower in the morning.  He is very happy that his money he earned the hard way is safely tucked in an envelope, waiting for season four of Fallen Skies to be bought. 

I never dreamed that our week which began with Barb and I meeting with Aaron, talking firmly about his options and his choices, would end on such a positive note.  Oh, there will be bumps in the road.  There will be ups and downs, as always. 

But honest work and honest rewards are something that Aaron has responded to with genuine joy.  I am very thankful for that! 

Aaron has the same needs that we have.  He just doesn’t verbalize them like we do. 

But those fingers full of pipe parts and that smile on his face tells us all we need to know. 

 

 

 

Keeps Me Singing

It was probably over 55 years ago that a soloist with a beautiful voice went to sing in a revival service in the little town of Oakvale, West Virginia.  She sang the hymn “I’d Rather Have Jesus,” and then she sat down to listen to the sermon preached by Jimmie Jones.  Her heart was disturbed as she listened to the gospel being preached that night.  She thought of the song she had just sung, and of the words that came out of her mouth in such a perfect performance…..words that she knew she didn’t really mean.  For it was just that – a performance.  She sang beautifully, but she sang a lie.  She knew that she didn’t really know Jesus, and that she didn’t really mean it when she sang about wanting Jesus more than anything this world affords. 
 
This woman was my mother, and that night changed her life and the life of our family.  She went home and urged my dad to go with her to listen to Jimmie Jones preach.  Mom didn’t know that my dad had already trusted Christ as his Savior.  It wasn’t long before my mother made the same decision.  She bowed her head and confessed her sin, and asked Jesus to be Lord of her life.  God changed my parents tremendously.  They raised their five children to know and serve the Lord, and they left us a spiritual heritage that has more value than anything this world affords.  And “I’d Rather Have Jesus” became my mother’s signature song…..one we heard her sing many, many times over the years.  One she sang with honesty for the rest of her life because of the work that God had done in her heart.
Last week we said goodbye to my mother for the final time on this earth.  We had really lost her a long time ago to the horrible ravages of Alzheimer’s.  She no longer had her memories, her personality, or any of her other faculties.  But even Alzheimer’s cannot take the Lord away.  He has promised to always be with us, and He always keeps His promises.  We saw evidences of His presence with Mom as she struggled in various ways.  What sweet comfort it brought to know that deep in her heart and her mind, God was ministering to her in ways that we could not. 
Two weeks ago, on the day before the call went out to family that mother was dying, we saw a profound picture of God’s grace in her little body and in her heart.  Jan and her daughter, Bethany, had gone to spend some time with Mom in the care home where she lived.  Mom was sitting in the commons area, her head down and her eyes closed, unresponsive to the voices and the noises around her.  Suddenly, on the television that was playing, a man started singing “Amazing Grace.”  Bethany looked down at her grandmother and saw that her lips were moving.  Surprised at this, she and Jan leaned down and put their ears to Mom’s moving lips.  Here is what they heard coming from my unresponsive mother:
         
         
         
         
My mother was singing!  Jan and Bethany wouldn’t have believed it had they not heard it for themselves.  She was clearly singing this beautiful old hymn.  She was singing about Jesus, whom she was soon to meet.  God’s prompting, God’s presence, was there with Mom in that room.  Jan and Bethany joined her in singing, and then Bethany said, “I love you.”  Mom clearly said, “I love you” to Bethany, her eyes still closed.  Then Jan said, “I love you, Mom.”  And Mom said, “I love you” to Jan as well. 
Those were the last words that my mother spoke.  The next day the family got the call that she was dying, and on Monday, May 4, my mother met Jesus.  Jesus, the sweetest name she knew.  Jesus, who filled her every longing.  Jesus, who kept her “singing as I go.”  Singing as she got ready to go to heaven. 
Like my brother, John, said at her funeral…..how appropriate that Mom’s walk with the Lord began with a song many years ago.  And her life with the Lord ended with a song…..a song that surprised us all, but was such a gift of grace and hope from God. 
A gift and an example that we will always, always cherish. 
 

In The Blink of An Eye

I’m thinking of my dad today for some very special reasons.  It’s been 6 ½ years since he went to heaven after fighting cancer for 8 years.  Dad was the one of the godliest men I have ever known.  He was so kind, selfless, and loving.  He was firm in his faith, never wavering through all the ups and downs of life, including his two bouts with cancer which finally took his life.  Yet despite his strong faith and his deep trust in the Lord, Dad seemed to have a great fear of death. 

None of us looks forward to dying, so on many levels we could understand his dread.  As he weakened and the end was coming nearer, he still seemed to struggle more and more with his uncertainties.  Finally one evening my brother John spent some time alone with Dad, talking to Dad about what was on his heart.  It was during this conversation that John was able to gently lead Dad to really express his concerns about dying.  One of Dad’s biggest issues was that he wondered what he would say to Jesus when he first saw Him.  We all just smiled and shook our heads when we heard that.  There he was again, not worried about his own pain but instead concerned about what he would say to his Lord.  And how like Dad that was!  He was always the ultimate planner and organizer, so for him to face this uncertain encounter with no plan or idea of what it would be like was very hard for him to handle.  Plus it very much showed his humility as he felt completely unworthy to stand before Jesus. 

Something else that was heavy on my Dad’s heart was the fact that he would be leaving my mother.  They had been inseparable during the 22 years of retirement they had enjoyed together.  Then when dad was put in a hospital bed, Mom slept in their bed right beside him and they held hands through the rails.  Dad knew that Mom was really showing the signs of Alzheimer’s in ways that we hadn’t seen.  He kept trying to find ways to tell us about it without Mom hearing him because he was so worried about what she would do when he was gone, and he wouldn’t be there to help her.  Part of his letting go was hearing our words of assurance that Mom would be cared for and that he didn’t need to worry about her.

But it wasn’t just that Dad was burdened about leaving Mom alone.  It was also that he was very concerned, almost fearful, of him being without her in heaven.  He was so close to her, so dependent on her in many ways, that the thought of being without her……even in heaven…..was nearly unbearable to him.  So on the night that John talked to Dad, he told Dad to remember that God said a thousand years to Him is but a day.  John said, “Dad, I really believe that when you go to heaven it’s going to be like you blink a couple times and then Mom will be right there with you.”

I don’t know that anything comforted Dad more than those words and that thought.  Later that night, as Mom and I sat with him in their family room, he very softly and slowly shared that thought with us…..and he sweetly smiled as he said it.  His soft, gentle smile….full of the hope that the separation from his Beth wouldn’t be so long after all.  We all know it was that night when Dad felt released to go on to heaven.  He knew that everything would be all right, and that Mom would join him in the blink of an eye.  Several days later he left this earth for heaven.

I’m thinking of my Dad today, and definitely my mom, for another very special reason.  Today my mother also left this earth for heaven.  She and Dad are finally together, whole and healthy at last!  I can’t imagine the joy they’re both experiencing right now to be with Jesus, and to be together for eternity.  Jan told me that Mom opened her eyes, eyes that had been shut for days.  It was as if she saw something.  Then she closed her mouth, closed her eyes, and was gone.  Did she see heaven?  Did she see Dad, grinning from ear to ear?  Did she see her Savior?  What precious and awesome thoughts those are!   

So while we cry at having to say goodbye to our last parent, we can’t help but smile and be so happy for her and for Dad.  Oh my goodness, I would love to have seen that reunion!  Someday we’ll join them there, and we’ll have so much joy and so much fun.  But until then, while we will sometimes weep and we will often miss them both, we can smile at God’s sweet goodness and rejoice over the certain hope we have of life together in heaven.  
 

Hey Mom, you and Dad have a great time up there! 

When we all get there, I do hope the Lord lets us sing “Oh, It Rained, Rained, Rained” again, just to torment dad. 

We’ll all see you in a couple blinks of an eye.    

Spilled Water

Today Aaron had a dentist appointment to have his teeth cleaned.  He was happy about it, not because he likes having his teeth cleaned but because he knows that afterwards it means we hit the Pizza Hut buffet down the road from the dentist’s office.  Aaron and I happily walked into Pizza Hut, only to find one very busy server working hard to keep up with a rapidly filling restaurant.

We waited a long time while this poor overworked server was on the phone before she was able to break free.  She told us just to go ahead and pick a seat, but asked us first what we would like to drink.  Aaron quickly told her that he wanted water WITH lemon…..because Holly, who had just taken care of him during our trip to Houston, put lemon in her water. 

“Mom!” Aaron had said to me earlier this morning.  “Do you know what Holly puts in her water?”  Then he proceeded to tell me how Holly put lemon in her water.  “Can I put lemon in my water when we eat at Pizza Hut?” he asked.  And I told him that he could.

So when the busy server asked for our drink order before we seated ourselves, Aaron jumped on it and made sure that his water would have a piece of lemon.  When we sat down, and our waters came, Aaron said, “Holly squished her lemon and poured the juice out.  Will you do that to mine?”  So I squished his lemon and he watched me pour the lemon juice out into his water.  He was happy.

We walked over to the buffet line, where the salad in the large bowl at the salad bar was nearly gone, and there was no pizza left on the pizza side.  Poor busy server!  We were able to fix small salads…..Aaron’s with way too much dressing before I could wrangle the dressing ladle from him.  Soon we were able to get some pizza, too, and we sat there eating and chatting.

I looked up at one point to see that five Amish young women had come in and were waiting to be seated.  With them they had two small children.  They were such refreshing and lovely young women, I thought.  I watched as others stared at them, and I hoped I wasn’t doing the same.  It must be hard sometimes to always stand out as being different.  Finally they were shown to the seats right behind Aaron and me.  I pretty well knew what would happen when they walked past us. 

“Mom,” Aaron said.  “They have on hats.” 

“Yes,” I answered.  “That’s part of their religious beliefs.  And don’t stare or point.”

“I was watching her,” he continued.  “You’d say I was staring?”

Again I just cautioned Aaron not to boldly stare, so he continued eating.  Finally, we got up for one more trip to the buffet, and as Aaron was getting out of his side of the booth his arm knocked over his nearly full glass of water.  His water with all the squished out lemon juice went all over the table and down onto my side of the booth.  Thankfully I had already stood up, so I didn’t get wet.
 

Aaron apologized profusely, so I told him it was fine…..and told him not to be so loud…..and he reached his arm up to me.  I leaned down as he still sat there and he gave me a big hug.  The older man in the booth beside us stared even more than he had already been staring.  And as I turned to see what kind of mess we had, I made eye contact with one of the young Amish women.  She looked quickly away, but I knew she was watching us and probably wondering.  I knew that I felt the way she must often feel.

For the rest of our meal, I sat with Aaron on his dry side of the booth.  Our poor harried server never did make it over to clean up the mess, and that was fine.  I felt really sorry for her.  Besides, this gave Aaron and me a chance to sit close together.  He leaned his head on my shoulder, so happy that Mom wasn’t angry and that all was well.  I knew he felt so badly about what had happened, but I assured him that it was fine. 

He was very happy that I offered him my water, but I took my straw out so he wouldn’t get my cold.  He quickly grabbed his straw that was laying on the table in the mess of spilled water, ice, and soggy napkins.  He was content as he ate his pizza, not minding that the server never made it over to clean our table.  While he ate, he sang songs from Phantom of the Opera…..quietly……and he drank every drop of my water.

 
I was now facing the Amish women as I sat beside Aaron.  One of the young women that was facing me was pregnant.  I looked up at one point and our eyes met, and we both smiled at each other.  I wondered what she was thinking.  I wondered if she wondered about Aaron.  Wondered if she wondered what my life is like, just the way I wonder what her life is like. 

Aaron and I finally went up to the register to pay.  I had to run after Aaron at one point because he walked rapidly over to the buffet.  He was just ready to reach in with his bare fingers and grab some bread sticks for the road before I was able to stop him.  Oh Aaron!  You know better! 

Aaron and his messes that he makes!  In the short time that we’ve been home from Houston, we’ve had several of those messes to deal with and try to correct.  They may be physical……like me on my knees cleaning up certain spills and missed aims, if you know what I mean.  Or they may be messes created by his behaviors.

That’s why I was on the phone this morning with Bryan, one of the Paradigm staff that takes Aaron with him to work on houses.  Aaron loves working with Bryan, but on Monday Aaron had a meltdown at Paradigm and was mean to Bryan.  I wondered what Bryan would say when we talked, but he was amazing.  He really loves Aaron.   He really understands Aaron, as much as any of us can understand him.  And he knows that all he can do…..all any of us can do…..is clean up the mess and move forward.

Sometimes we have to sit in the mess awhile, like Aaron and I today in our watered down booth.  Sometimes there are no quick fixes or easy solutions.  Aaron sees the mess and the havoc it creates, but it’s important for him to know that he is still loved in the midst of it.  He is still cared for despite it all.  He felt bad about the water today, and he usually feels badly about the outbursts he has.  Yet he can’t always stop it when he’s upset, any more than he could stop the water that spilled so suddenly today. 

The damage is done, but I can still sit closely enough for him to put his head on my shoulder, and know that he is forgiven and loved.    Believe me, sometimes I want to run to another room….another house….another state!  But that’s not the solution, for Aaron or for me. 

We stay in it because we are all Aaron has.  God gave him to us for a reason, messes and all.  And we do love that big, crazy guy. 

Spilled water and all.

Along Came a Storm

Saturday was a day that Aaron had anticipated for a few weeks.  That’s because Saturday was the day we were celebrating Rosa’s birthday by eating with her family at Chili’s.  Aaron and Rosa are very special friends.  They don’t see each other very often anymore since Rosa has a new day group and a new residential setting.  These infrequent get-togethers are very nice for both of them, and usually very enjoyable for us parents.

I knew that Aaron was excited about going to the birthday dinner when at 10:15 Saturday morning, he asked what time we were leaving.  I told him that we would leave at 4:45.  He asked again a little after 1:00, and of course my answer was the same.  He told me that it was going to be a long time before we left, but he hurried back up to his room and got busy once again.  I was surprised that he didn’t ask about our leaving time again.  I expected at least two or three more queries, but he didn’t ask further. 

Aaron and Rosa were happy to see each other, in their own way.  Rosa opened Aaron’s gift right away, and soon was holding some of the colored pencils he gave her in her hand.  At one point, amidst the commotion, I just watched the two of them.  Rosa talked and Aaron responded as he listened to every word she said.  Aaron didn’t really look at her like you and I would, yet he was listening and answering. 
 

After dinner, Aaron and Rosa wanted Rosa to ride in our van to her house.  We had all planned to go to Rosa’s house for birthday cake, so off we went on a pretty drive through the country west of Wichita.  Storm clouds had been building in that direction.  They were beautiful to see as we looked out over the flat Kansas landscape.  The clouds, the lightning, and our radar told us that soon we would have a good old Kansas thunderstorm. 

 
Leroy and Louise’s house is an old family farmhouse, built in 1912.  They have remodeled it, and it’s just so lovely and interesting.  We thoroughly enjoyed walking around the yard, learning some of the history.  Then it was fun to take the inside tour, seeing original elements of the house that are still intact and appreciating the updating that has been done.  I loved seeing the various family pictures on the walls, a story waiting to be told for each one.

However, as we oohed and aahed and asked our questions, Aaron was becoming pretty perturbed.  He had lost interest in the house, the history, the beautiful views from the large windows, and even Rosa’s room that he finally got to see.  I was trying to enjoy this time with friends, but Aaron was demanding more of my silent attention……and then eventually my not so silent corrections as his attitude was becoming more evident.  When Gary and Leroy came inside, Gary joined me in our attempts to keep Aaron on track. 

It was time, then, to look at Rosa’s pretty cake.  The candles looked like crayons, perfect for Rosa.  She had jungle themed plates, cups, and napkins in bright colors.   Those were also perfect for Rosa because she was adopted by Leroy and Louise from a jungle tribe in Brazil.  Talk about a story!!  Now there’s one for sure!

 
 
 

 
We sang Happy Birthday, and then Louise asked Aaron to help Rosa blow out her candles…..which he did, by blowing them all out except for one.  Rosa didn’t seem to mind, thankfully.  But Aaron still wasn’t happy.  He was continuing to let us know that he was ready to go home.  We knew that arguing with him wouldn’t help at all, but only make matters worse.  He didn’t want to sing Happy Birthday (but then he really never does like doing that); he didn’t want to eat cake; he didn’t want to eat ice cream; he didn’t want to drink sparkling grape juice; and he didn’t want to sit and watch us do all those things.  But we did sit and enjoy our cake and ice cream and sparkling juice…..with Aaron lamenting that he wanted to go home.

The storm was picking up outside and lightning was flashing, which only increased Aaron’s insistence that we go home.  His agitation was increasing, too, just like the storm outside. 

 
“Aaron, you’ve wanted to come to Rosa’s house for the longest time.  Why are you acting this way?  Why do you want to go home?” I asked.

“Because I want to watch the storm from MY room!” he answered.

I wasn’t at all surprised by his answer, though I was disappointed at how unhappy he was.  He wasn’t out of control, but he wasn’t enjoying this time that he had said he wanted to someday have.  Time to see Rosa’s house and Rosa’s room and Rosa’s life.

But a storm had intruded, and suddenly nothing else was interesting to Aaron.  All of our talk was about a house and a history that surrounded this pretty house, while Aaron just wanted to see it all quickly and then go home where he could get back to his world and his house and his history……and enjoy the storm in his own room, where storms are meant to be enjoyed.

It seems selfish to us, but when you know autism you know that it’s really not selfish.  It’s just rigid.  It’s Aaron’s rigid way of living his life.  Yes, Aaron’s life is mostly about Aaron, but those realities are beyond his control.  He thought that he was using great control to stay as long as he did without a complete meltdown…..and I guess we should be thankful for that as well.

That evening to me was a perfect example of the saying about trying to fit a square peg in a round hole.   Wanting Aaron to just get over it…..wanting him to enjoy the talk and the tour…..wanting him to really get excited about the birthday celebration with the cake and the decorations…..wanting him to enjoy the storm at Rosa’s house instead of in his room at his house…..well, it just wasn’t going to happen.  We could hammer all day, but the square peg would NOT fit in the round hole.  Nope.  Not going to happen.

It’s embarrassing to Gary and me, but we do understand what makes amazing Aaron tick.  A storm in any other place is just not right.  He wanted his house, his room, his pajamas on, his way.  I’m glad we did stay and we did make Aaron stay, stretching him beyond his comfort zone without devastating him.  I’m glad that Leroy and Louise understand, and I hope that Rosa was happy with the evening.  I do wonder what she was thinking, but she also knows Aaron well. 

You know, if Aaron was blind I would never ask him to go walk down a busy sidewalk by himself, unassisted in any way.  If he was in a wheelchair, I would never ask him to go up or down a set of stairs by himself.  Aaron is confined, in a sense, by autism.  He is confined to a way of functioning that cannot be overcome by mere encouragement.  Just like I could not cheer him in a wheelchair into being able to conquer those stairs, I could not cheer him with my words or expectations into being able to function appropriately at Rosa’s house on Saturday night.  He cannot just ignore his autism…..cannot stuff it into a corner of his brain for an evening and act like we want him to act.  He does try, like he did at Rosa’s house, but it’s very difficult for him.  We see progress sometimes, and other times not so much. 

On the way back to our house on Saturday evening, the rain fell hard against the van.  Aaron was sitting in the middle seat, visibly relaxing as we headed to our house.  He went inside, talking happily, and quickly changed into his pajamas.  Later, we had some conversation about the evening…..what was fun and what we were disappointed in concerning his behavior.  Will he learn from it?  We can only hope.  We can only keep trying.

But most of all, we must keep understanding and we must try not to be too discouraged.   We all have ups and downs.  Aaron’s are just usually louder and involve the people around him, no matter who they are. 

Maybe that’s why he likes storms so much.  They’re definitely seen and heard, just like Aaron. 

We were sure that Saturday would find us slipping that round peg in a round hole with no problem.  We were sure that the evening would be an easy fit for Aaron.  But along came a storm…..

Who would have thought?

 

Aaron’s Funny Comments

Aaron’s Funny Comments

In keeping with the name of this blog……He Said WHAT?……I decided to just share some of Aaron’s funny comments.  I keep notes on my phone, in a notebook, on slips of paper – just wherever I can quickly jot down what he says.  I can’t remember for long the unique way that he has of expressing himself, so I do lots of grabbing and writing.  Maybe this will give you a reason to smile today.  Here goes!

 

Chick Flick:  “Annie is a girl movie.  Not a boy movie kind of way.”

 

About his thinning hair, as he explained that he’s not totally bald:  “I don’t mean being bald in one spot.  I mean being bald on different parts of my head.” 

 

After hitting his knee on the wall:  “I think I knocked my muscle!”

 

Aliens:  “That alien had a mad eye.”

 

Accents:  “What kind of accent are they from?  British?”

 

Aaron:  “Barb listens to Zach Brown.”  Me:  “Does she like them?”  Aaron:  “I don’t know.  I didn’t get to that yet.”

 

Commercial for Olive Garden:  “I remember when I got sick at Oliver Garden.”

 

Famous name:  “Sir Francis Bacon reminds me of food.”

 

Why does he need two deodorants?  “I’m separate.  I keep one in the bathroom for after I shower, and one in my bedroom for night.”

 

Coupons:  “Do you think razor coupons are getting famous?”

 

Basketball:  “Your Wichita State is the one with the blue suit on.”

 

Sponge Bob:  “I’m not a Sponge Bob cartoon watcher.”

 

Money for mall food:  “You didn’t give me enough for $5.36.  You only gave me $5.24.”

 

Describing shrimp:  “It’s a twist thing.”

 

Eating pizza:  “There’s a piece to a sausage on the floor.  Can Jackson have it?”

 

Letting Jackson lick his milkshake cup:  “I’m just giving him the pieces that are on the wall of the milkshake.”

 

After his tooth was filled:  “The hurtness is almost gone.”

 

Describing a tea bag:  “Where’s the tea filling?”

 

I hope that some of these Aaronisms made you smile, and maybe even laugh, today.  I whittled down some of my list, but there are many more where those came from.  And as soon as Aaron zooms in the door today, I better be ready to hear some more. 

Enjoy your world today, everyone!  Pay attention to every detail, because you just might miss something if you don’t.