Category: Adult Autism

My Wormy Cucumber…..and Aaron


Last night was a seizure night for Aaron.  We are so thankful that he doesn’t have constant daily seizures like our friend’s son, Elijah, has.  I told Wendy this morning that I don’t know how she does it apart from God’s grace.  I know that each of us who know the Lord depend on His grace for the many circumstances that we face in this life.  Having a suffering child is tough.  When Aaron has seizures is when I feel most vulnerable emotionally.  His autism is high functioning, though in its own way debilitating, but he at least can function.  His autism makes him at times very frustrating and it causes him to be in trouble more than we like, both here at home and at his day group.  Or then he can also be very endearing and funny, even hilarious.
But his seizures……they make me sad.  They show me the seriousness of Epilepsy…..the danger.  I may be vulnerable emotionally on these days, but he is vulnerable physically.  And as his mother, that scares me….and makes my heart hurt. 
However, I know from experience over the years that I cannot dwell on the scary or on the negative, even when it comes to my son…..my first born.  Being aware is one thing.  Being defeated with constant worry is quite another.  And constant regret……that’s one thing that I very consciously pull my mind away from when it starts down that path.  I would love for Aaron to have a normal life, a job, a wife and children…but he doesn’t and he probably never will.  Living with regret over those issues only pulls me down and doesn’t do anything to help Aaron.  Plus it’s not honoring to God, Who wants me to trust Him in all things.  That means ALL.  Even Aaron, my son, and my hurt over his pain and difficulties. 
 
Aaron slowly made it downstairs this morning after his three seizures.  He tried to stay up and awake but as is typical for him, he laid back down on the couch and fell promptly asleep.  I covered him with his favorite blanket……the animal print blanket…..and he slept deeply until he had another large seizure.  Now he is awake off and on, talking about wanting his coffee that he missed this morning……will it still be hot…….when can he have it……worried that he won’t get to drink it……typical Aaron.
 
Earlier, while he slept and with me being unable to leave this area of the house for fear of another seizure, I stood at the kitchen sink.  I was washing the produce that I had gathered in the garden yesterday evening before dark.  Some tomatoes…..okra…..a red pepper……one pear that I was able to reach from our pear tree……and a few stray cucumbers.  On one of the cucumbers I saw the unmistakable signs of worms.  The brown, crusty spots on the outside of the cucumber were my clue, so I grabbed a paring knife and cut into the peel.  Yep, there it was…..a yucky worm……and then another nearby.  It was tempting to just throw the whole cucumber away, but I’m pretty thrifty about my garden produce that we’ve worked hard to raise.  There was still plenty of good left in that cucumber, so I washed the remainder and put it with the other healthy produce.  Aaron loves cucumbers, so he can eat it later.
 
This might sound strange, but Aaron’s a lot like that wormy cucumber.  He has his issues…..his “worms”……..that disrupt his life.  The autism….the Epilepsy……they have completely changed his life from what we thought it would be.  When placed beside his sister and brother, we can see a stark contrast.  Andrea, a scientist and geneticist in a major lab……and Andrew, working on a professional NHRA pit crew.  Their lives are dreams come true for both of them.  We love hearing about their work, even when we don’t understand half of it.  It’s exciting and fulfilling for them.
Aaron is like that cucumber, yes.  He has some chunks removed……some expectations that we had for him that had to be removed.  But he has amazing value if we but stop and look.  God does NOT create mistakes.  Aaron has tremendous worth.  He draws us to God in ways we probably never would have been drawn otherwise.  He keeps us humble.  Oh, does he ever!!  He keeps us at times bowed down with worry or frustration or embarrassment.  But listen to the verse God gave me this morning:
“But You, O Lord, are a shield about me; my glory, and the lifter of my head.”  (Psalm 3:3)
I love how God gives me what I need, when I need it, from His Word.  He lifts my head to look not only up to Him, but to look at Aaron with new eyes……eyes of faith and trust in the God Who loves Aaron and loves us.  God has a plan for Aaron that is every bit as important and amazing as the plan He has for Andrea and Andrew.  We just don’t always measure Aaron’s value that way, but God does.  And He reminds me on these days that I need to as well.
Aaron……my wormy cucumber……just in this little area of my house, God has once again spoken to my heart.  
Friend who is suffering today, never doubt God’s plan and His love for you.  Let Him be the lifter of your tired head.  He does care…..He does have a plan……for all of us.
Including my wormy Aaron.  My perfect Aaron, with lots of good in him that God is using. 

A Bathtub and Other Stuff


My goodness, is August nearly over already?!  I seriously don’t know where the time goes anymore……and I realize that I’m sounding just like my Grandma used to sound.  Funny how that happens.  I feel like Aaron when he came into the kitchen after we had been into August a day or two.  He saw that my calendar page had been flipped to August and he said, with great surprise, “I didn’t know it was August!  I guess I wasn’t paying attention.  I was still on that July thing!”
Some days I think I’m still on that March or April thing!  Then I walk outside and am hit with these typical Kansas August temperatures.  UGH!  The temperature was 102 today when I took Aaron down to get him a haircut at Great Clips.  His name was called quickly because I had signed him in online.  It’s always nice to be called fast, probably more for me than for Aaron.  I never know what Aaron will say or do while we sit there in that small waiting area……….but I do enjoy the looks on the faces of the others sitting there with us as they try to figure out Aaron.  Good luck with that.  But today he didn’t have time for hardly a word before his name was called.  He stood up and I reminded him to hand me his glasses…….and as always, he stood there and also took off his watch.  He would have also given me his ring if he was wearing it.  I always wonder if the other patrons are waiting for him to remove his shirts and shorts. 
The haircut and beard trim went quickly.  Aaron answered the hair dresser’s questions but didn’t make any conversation today.  I handed the girl his debit card, which she swiped while he was putting on his watch and his glasses.  He signed the receipt, humming his monotone hum the whole time, which made both the hair dresser and me smile.  Then he grabbed a Dum-Dum lollipop from the gift display on the counter while I took the Great Clips pen from his hand before he stuffed it into his pocket.  I know him so well.  But not well enough, because while I finished writing her tip on the receipt, Aaron said that he would be right back as he quickly turned and was out the door before I knew it. 
Oh brother, I thought!  And just as soon as I got to the Great Clips door to leave, Aaron was barreling back inside……all smiles……..telling me that he had tried to open the door of the martial arts studio nearby.  He has asked and asked and asked about that place, so he decided to grab the opportunity and check it out himself.  Too bad it was closed…..for Aaron it was too bad.  Not for the unsuspecting people in there who would have been loudly interrupted if Aaron had been allowed to barge in.  I must remember this the next time Aaron gets his hair cut………or somehow manage to always take him on Sundays, when the martial arts studio is closed!
Aaron has had some intestinal trouble today, which for Aaron nearly always means diarrhea.  Usually he comes up to me and very softly says, “Mom, I have a problem.”  And I nearly always know what he means.  The other day he said, “Mom, the way I pour my cheese, it gives me diarrhea.”  
No, Aaron, it’s the way that you EAT your cheese cubes that gives you diarrhea.  More specifically, the amount you eat…….which is the amount you pour in your bowl.  OK, maybe it IS the way you pour your cheese that gives you diarrhea.  I need to think about that.  He’s usually right, in the long run.  Sorry for the pun.
Speaking of puns and irony, Aaron doesn’t get those at all.  He loves to read the comics, at least a few favorites, every day.  He read this comic in the paper during supper the other night.  I so wish I could describe the conversation between him and Gary as Gary tried to explain it to him.  I should have just grabbed my paper and started taking notes right then.  Aaron totally didn’t get the comic.  I ended up with the remnants of the conversation after supper as Aaron still tried to understand what the bowling pins meant. 
“I get it!” he finally said.  “They’re just gonna ACT like they fell!”
Well, not really, Aaron.  And off I went again, trying to explain it.
“I get it!!” he said again.  “They don’t want to be hit!”
Again I explained.
“I get it!!” the broken record repeated.  And I waited.
“They’ll act like the fell DOWN!!!”
Whatever.  Yes, Aaron!  Hahaha!  Isn’t that funny?!  
He agreed and we were both happy.  Sometimes I just have to come to grips with the fact that he will NOT ever get it…….ever.  And he is happy, so I may as well be, too.
I got him a new set of sheets last week.  He was with me when we found them at Big Lots and he LOVED them.  Cheetah print sheets……….right up Aaron’s alley for sure!  They went very well with his animal print fuzzy blanket that he loves.  I washed the sheets and last Saturday we put them on his bed.  He was very happy.
But not for long.  He came downstairs a couple mornings later and with great disappointment told me that those sheets just didn’t work.  I asked what was wrong with them and off we went into the world of Aaron trying to concretely explain the reason that the sheets didn’t work.   But he just couldn’t do it.  He couldn’t explain what was wrong, even as he used hand gestures and tried to answer my questions.  We went up to his bed and I saw that the top sheet had gone way down, so we fixed it and I hoped for the best.  
The next day it was the same story…..and the next.  He said the side came undone.  He said the sheet was too big.  He said it was the leopard part that didn’t work……although I thought they were cheetah, but I didn’t say that.  It was already too confusing.  I told him that I thought the texture of the sheets made them slick.  “Yeah!!” he agreed.  “They slick off of me!!”  There!  We had it!
Finally on Wednesday we just took the top sheet totally off and put on another top sheet.  However, the bottom fitted sheet kept wrinkling up……and with Aaron’s tactile issues, this wasn’t working.  It was a HUGE relief yesterday to take the sheets completely off and make his bed with a tried and true pair of sheets that I know will work.  The cheetah/leopard sheets are cleaned and nicely folded, waiting for the next donation pick-up.  
Lots of other things happened this week.  Let’s see……he stubbed his toes, but they’re OK.  Aaron goes on and on when something like that happens, wanting to talk it to death and figure out every aspect of his stubbed toes.  He finally pointed to his toes and said, “Mom, it was just these two toes.  Have you hit your few toes before?”
I assured him that I have indeed hit my few toes before and it sure felt like I had hit LOTS of toes.  And he understood that and he agreed.
Wheel of Fortune finished up their Spa Week.  Aaron was very interested in just what a spa is and what one does at a spa.  He finally felt like he had a handle on it…….unlike the bowling ball comic……and couldn’t wait to share his understanding with me.
“Mom!  A spa is where they get in a bathtub and other stuff!”
I wonder if I want to know what the other stuff is.
And I have just written about a lot of “other stuff” that has been our week with Aaron.  I could write a lot more “other stuff” but I should stop here…..for your sake.  I always have more stuff, trust me, after each day with Aaron.
Tomorrow we start a new week.  New ups.  New downs.  New stuff.
Here goes!

Couponing Done RIGHT!


Most of you know that Aaron loves to cut out my coupons on Sunday.  Only on Sunday.  He will not touch a coupon to speak of on any other day.  And I’ve blogged about his insistence that only he can cut the coupons, no matter how tired he is or grouchy he is.  Mom is not allowed to touch the coupons because I do not cut them out correctly.  He also has his trash can that holds the tiny little clippings from where he cuts the strips of paper into smaller pieces……and the trash can that holds larger pieces of paper……and his carefully orchestrated stack of left over pages from which he cut the coupons……..and then his coupon box in which each coupon is carefully placed.
It’s exhausting.
I usually try to sneak a peek at the coupons on Sunday mornings before he sees them.  That way I can remove pages of coupons that contain items I won’t buy.  This saves Aaron a lot of time.  However, he has seen sections of coupons that I am hiding from him when I buy an extra paper……and war breaks out.  He insists on cutting them out, no matter how tired he is…..because they are coupons……..and they have dotted lines……..and they must be cut.
 I cleverly look at the coupons before he gets out of bed, if possible.  I hide the coupon pages I remove deep under all the sale papers and stick them in the middle of the newspaper that will be put in the recycle bin later.  Sometimes when I am in the middle of this covert mission I hear him start down the stairs, so I hurriedly shove coupon pages here and there as I try to hide all evidence of my trickery.  I feel a little breathless and guilty as he enters the kitchen.  He hasn’t caught me yet, but I dread the day that he might.  
Aaron does a little of his own hiding, too.  I saw it this past Sunday as I walked through the family room.  There under the bench that sits beside where he clips the coupons lay a couple pieces of paper.  I leaned over closer and saw that the papers were store coupons.  I had put them into the coupon box a couple days earlier………..the coupon box that Aaron uses to hold newspaper coupons.  
  
 
Silly me.  Don’t I know better?  The coupon box holds the coupons that Aaron cuts……on the dotted lines………just right.  
 
Store coupons are not newspaper coupons.  Store coupons were not clipped from the coupon pages on a dotted line.  Store coupons have their own place, even if it’s under the bench.  Store coupons do NOT go in the same box as newspaper coupons.  
But I’m a little devious sometimes.  I have put the store coupons back into the newspaper coupon box.  Hehehehe!
Let’s see what happens this Sunday.

Caterpillars and Butterflies


This morning I read another small section of Elisabeth Elliott’s book Keep a Quiet Heart.  In the chapter entitled There Are No Accidents, Elisabeth talks about interviewing Judy Squier.  Judy was born with no legs, so Elisabeth asked Judy to write a letter to the parents of a little boy born without arms or legs.  I quote from part of the letter that Judy wrote to these parents:
“’What the caterpillar calls the end of the world, the Creator calls a butterfly.’  As humanity we see only the imperfect, underside of God’s tapestry of our lives.  What we judge to be ‘tragic – the most dreaded thing that could happen,’ I expect we’ll one day see as the awesome reason for the beauty and uniqueness of our life and our family.”
She goes on…….the whole section is excellent and struck a deep chord in my heart.  But my mind has been on that caterpillar and butterfly all day.  You see, last November I wrote a blog about how Aaron found a butterfly and how he wanted me to hold it.  It was a special moment for me that taught me such a sweet lesson.  Today I’m thinking of other aspects of that butterfly……who was first a caterpillar.
 
I’m thinking of the day that we first heard Aaron’s diagnosis of Epilepsy.  I remember how shattered I felt as I sat at my desk that night in Germany.  Our little blond headed blue eyed son had what?  Epilepsy?  What does it mean?  What WOULD it mean?  And I cried, deep sobs of pain and acceptance.  Nine years later……another doctor, another place, yet another diagnosis.  Autism?  Asperger’s Syndrome?  What does it mean?  What WOULD it mean?  And again, when the children were asleep, I cried deep sobs of more pain and more acceptance.
Pain and acceptance have been our familiar companions all along this journey with Aaron.  I know that many other parents feels this pain, some more acutely and more severely than we ever will.  The pain of medical tests….the pain of medicines for this and more medicines for that….the pain of hospitals…….the pain of IEP’s in school…..the pain of moving and having to introduce our child all over again in our new world…..the pain of his questions…..the pain of peer rejection……the pain of trying to understand what makes him tick and what just ticks him off, and why……the pain of my guilt when I blow it and I erupt along with Aaron…..the pain of questioning God……
Pain comes naturally.  Acceptance is a decision that I make.  Acceptance is usually slower.  It certainly has been for me.  Maybe he’ll get all better with time.  Maybe the seizures will go away after puberty.  Maybe this new drug will do the trick.  Maybe he can have surgery.  Maybe the VNS will kick in.  Maybe it’s not really as serious as all that.  Maybe the autism will improve with this diet.  Maybe those guys will be Aaron’s friend.  Maybe Aaron won’t move so much and talk so much during church today.  Maybe he won’t be grouchy when his bus comes to pick him up today.  Maybe he’ll just love his day group.  Maybe he can hold a job one day and be like everyone else.  Most of the maybes don’t happen…….and acceptance slowly sinks in.  Reality of life with Aaron has been slow going……very slow going.
But it’s not the end of the world.  It may the end of the world as we know it as far as our hopes for Aaron in certain areas……….but just like that caterpillar, there is beauty in this life that God has given us.  “What the caterpillar calls the end of the world, the Creator calls a butterfly.”  I held a butterfly that day last fall as I stood outside with Aaron, and I hold a butterfly in my life as I look at Aaron.  That’s because God is sovereign, and He has a plan for Aaron and a plan for our life with Aaron.  It’s a plan of beauty, even when I can’t see it as such.  
 
I have to hold on to that truth on the bad days, the sad days, the worried days, the heart-rending days of this life.  Oh, we have laughter and delight with Aaron but underneath it all are the concerns and the frustrations and the weight of always thinking about our special son.  And I deeply feel the weight of so many other moms……friends that I love and friends that I hurt for as well as they fight this fight and live this life for their special children.  
I want to tell them that God is weaving a beautiful tapestry of their lives.  They don’t feel it or see it any more than I do on many days, but God truly is a God of purpose and beauty.  So we lift each other up, we cry together, we pray for each other, we try to encourage one another……and we trust our sovereign Heavenly Father even when He doesn’t seem to answer our prayers in the way we want.
Acceptance…..of Who God is…..and how much He loves me and He loves Gary, and Andrea and Andrew…..and especially our special Aaron.  I want to hug my other moms of special children…..Wendy, Goldie, Shikara, Cheryl, Trish, Louise, and so many others.  I want to say that I may not have great words of wisdom, but I do have the truth….as do you…..that God is in charge of making caterpillars into butterflies.  
And He can…..He will………bring beauty into and out of our lives with our special children. 

Aaron and Rosie Go To Lunch


Many of you have kept up over the past few years with the story of Aaron and Rosie.  I will put links for my other Aaron and Rosie blogs at the bottom of this blog.  Aaron and Rosie met at Paradigm, the day group that they both attended, and they developed a special friendship.  Now Rosie attends another day group, but they still see each other for a short time at the end of their day, and they ride together in the van that brings Aaron home at the end of the day and then takes Rosie to her house. 
Aaron has to be told over and over not to give Rosie food or money or her very favorite thing in all the world…….crayons.  He will do any of these things at any given opportunity.  His favorite thing to do was to sit with her on Fridays at the theater and share his popcorn with her.  They would do this every Friday, so when I first told Aaron that Rosie was going to a different day group, he thought for a few seconds and then said, “No theater?”  I cried.  And he didn’t see that, just like he can’t see what he does so often to my heart.
For several days now, Aaron has told Gary and me about a new client at Paradigm.  J. has come into Aaron’s world in a rather unwelcome way.  He doesn’t mind new clients, and has learned a lot about getting along with new people.  I don’t know if the Paradigm staff would agree with that, but that’s how it seems to us.  Anyway, according to Aaron, the reason that he is rather unwelcoming of J’s friendship is because she told Aaron that her boyfriend had broken up with her……and then asked Aaron if he would be her boyfriend.  
Well, this has created a huge dilemma for Aaron.  He has talked and talked about this situation with Gary and me.  It seems so simple to us to follow the advice that we give to Aaron as we tell him to just not take J so seriously.  Just tell her that he wants to be her friend.  Just tell her no when she asks him to be her boyfriend.  Just be nice to her but don’t………what was that?  She told you to hold her hand?  Yeah, well, just don’t do that either, Aaron.
Aaron is so perceptive.  Just yesterday he said, “Mom, J. is faking it.  I said my stomach hurt and she said, ‘Let me hold your hand, Aaron.’”  Gary and I laughed and laughed at that one, but it’s really amazing to think that Aaron knew J was using his stomach ache as an inroad to hold his hand.  Way to go, Aaron!
Another aspect of this boyfriend/girlfriend problem is that Aaron really does see Rosie as that one special girl in his life.  He doesn’t like for her to be called his girlfriend or for him to be called her boyfriend, but he does see her as his one special girl…….who is a friend.  Rosie’s parents, Louise and Leroy, and Gary and I don’t want to make Rosie and Aaron’s friendship a boyfriend/girlfriend thing either…..but we do enjoy the relationship they have.
So along has come J and she is causing come conflict in Aaron’s heart.  Just today Aaron asked Gary, “Dad, what do you think’s wrong with J?  She’s trying to make me go away from Rosie!”  And once again, Gary tried to explain it all to Aaron and give him some answers.
His comments about Rosie are so sweet………so insightful.  A couple days ago, speaking of Rosie, he said, “I found someone who likes me and agrees with me on things.”  And don’t we all know that those are two characteristics that attracted each of us to our special someone?
And then there was this concise statement that Aaron made about Rosie:  “Me and Rosie……we’re connected.”
This melts my heart.  We want Aaron to have that special someone in his life, on whatever level is best and suitable for both of them.  Their relationship is sweet and it is typical for them, where they are in their special lives……and that is enough.
That’s why today was a special day for Aaron and for Rosie, for Louise and for me.  On Thursday Aaron stood in the kitchen while I finished cooking supper.  He was once again talking about his rock and his hard place………Rosie and J.   Then he asked, “Mom!  Can we go to Burger King this weekend with Rosie and her mom?”  My first thought was to think of several reasons why we probably couldn’t do that, but the look on Aaron’s face and the pleading in his voice stopped me in my tracks.
I thought of how much Aaron depends on us for his social life.  He can’t drive and he can’t make these events happen without our help and our permission.  How would I like to live that way?  And I’ve seen more and more that Aaron is so perceptive about life and about people, much more than we give him credit for.  How can I turn a blind eye and a hard heart to his desire for a normal “date” with Rosie?  How can I not make that happen for him?   So I quickly texted Louise and she quickly texted back, and soon we had agreed to meet at Burger King on Sunday at 1:00, Aaron and Rosie in tow. 
Louise said that Rosie was very excited when she saw Aaron and I pull up and then walk across the parking lot.  Rosie and Aaron didn’t really greet each other, but both of them were talking up a storm……..not to each other as much as to me and Louise.  As we ate our lunch it was like watching a tennis match.   Back and forth, back and forth went the conversation.  Aaron loves to talk, as we know, and Rosie loves to tell of things she has seen and places she has been and things that have happened.  Rosie likes for her mom to do a lot of the telling, but she contributes plenty…….and Aaron rarely stops talking, loudly, so it was a lively lunch.  
 
It’s so interesting to see Aaron and Rosie together.  Both of them are chronological adults but are so much like children when it comes to life and to friendship issues.  They don’t mind having their shared lunch with their moms.  It’s all they know and it’s all they expect……and want.  They see nothing odd about it at all.  I wonder what others in Burger King thought.  I hope they saw it as a wonderful moment for our adult “kids.”  Some normalcy in their all too restrictive world.
Look at Rosie and Aaron smile!
I’m so happy that I said yes to Aaron’s request, and I’m so happy that Louise took her time to bring Rosie to meet us for lunch.  To meet Aaron for lunch!  Being a parent is all about meeting the needs of our kids, and for us parents of special needs kids, the meeting of those needs may even extend into adulthood.  That’s the way it is and so we may as well accept it and enjoy it when we can.
As we drove away, Aaron was already planning a movie date.  It’s a good thing I like movies!  I hope Louise does!

Some of my Rosie and Aaron blogs:

http://hesaidwhatks.blogspot.com/2011/10/aaron-and-rosie.html 
http://hesaidwhatks.blogspot.com/2012/09/only-for-rosie.html

http://hesaidwhatks.blogspot.com/2012/11/the-very-special-birthday-gift.

 http://hesaidwhatks.blogspot.com/2013/04/rosies-birthday-dinner.html

 http://hesaidwhatks.blogspot.com/2013/07/what-rosie-did.html

Shut My Mouth!


I had been promising Aaron that he and I would have a fun day.  That means a day that does not involve a doctor or dentist visit but instead is wholly dedicated to doing something fun.  I looked at my schedule and decided on a day, and told him last week that the fun day would be Wednesday, the 6th.  I told him the date with some trepidation because once a definite date is chosen then I know that we must do what I said we would do on that day.  We MUST!!  And so I hope and pray that nothing unforeseen happens to cancel a date that I have set and that I have told him about.   Aaron doesn’t handle cancellations very well, which is why I often pop things on him at the last minute.  
Speaking of minutes, yesterday – our fun day – began with Aaron gingerly coming down the stairs first thing after getting out of bed.  He found me in the kitchen, as he usually does, and he immediately asked, “Mom, what time are we leaving for the movie?”  He and I had chosen to go see Guardians of the Galaxy at the theater.  I told him that we would leave around 12:00.
There was a short period of silence before Aaron once again asked what time we would leave……..and I reminded him that we would leave around noon.  Aaron took his pills and I poured his coffee, which I carried upstairs to his room.  Once back in the kitchen, I continued loading the dishwasher while Aaron just stood there watching me.  
“So when are we leaving?” he again asked.
“Aaron, I said we’d leave around noon,” I tried to patiently answer.
“Mom, don’t say around noon,” he replied.  “What time are we leaving?”
I turned my back so that I could smile, and I then told him that we would leave at ten minutes after twelve.  He thought for a second and then said, “So we’ll leave at twelve ten?” 
Sigh.  “Yes, Aaron, we’ll leave at twelve ten,” I told him……..and he left the kitchen, finally content that he had the time that we were leaving down to the minute, the way he likes it.  
As the morning wore on and Aaron tried to stay busy, I heard him come into my room.  It was a little before 12:00, but to Aaron the wait was miserable until it would finally be 12:10.  “So we’re going to wait a long time right now before we go to the theaters?” he asked.  
“No, Aaron, it won’t be long,” I said.  “Twelve ten will be here soon.”  And sure enough, I managed to pull it off.  We left the house at 12:10!!!  Aaron was happy and I was happier as we drove to the theater.
We listened to Alabama sing Song of the South……….sweet potato pie and shut my mouth.  Which is what I heard Aaron sing as we walked into the theater foyer, rather loudly…….”sweet potato pie and shut my mouth.”   So I reminded Aaron to please not sing right now, especially the shut my mouth part.  And after he ordered his large popcorn in his typical way…..”Can I have a large buttered popcorn?”……….as if he must ask permission…….he headed for the girl who took our tickets.   And I heard him again.  “…..shut your mouth.”  
Aaron!  And I smiled at the puzzled girl, and I asked Aaron if he was singing again so that the puzzled girl would hear me and hopefully know that Aaron was singing a song that she probably didn’t know and that he was NOT telling HER to shut her mouth…..
Oh Aaron.  
We found seats near the back of the theater, but there was still someone right in front of us, which always worries me………because Aaron has been known to grab the seat in front of him when he gets up to go to the bathroom or when he gets excited.  Or he might kick the seat……or talk too loudly…….or laugh way too loudly………or CLAP…….
Don’t sit in front of us at the theater.
So after we sat down and Aaron had gotten settled, placing his popcorn on the floor beside him and his drink in the cup holder beside the (thankfully!) empty seat beside him, I proceeded to give him my usual theater directions.  Read the above paragraph and you will know what I reminded Aaron not to do, as I tried to be as positive as possible.  Oh, and don’t eat any napkins, Aaron.  Yes, he does that and don’t ask me why.
All the while, Aaron was glancing at the clock and at his popcorn.  He will not eat his popcorn before the movie starts.  He will not eat his popcorn when the curtain goes up.  He will not eat his popcorn during the pre-movie rules that show on the big screen.  He will not eat his popcorn during the upcoming movie trailers.  He will not eat his popcorn during the cool digital sound check stuff that is aired.  He will only eat his popcorn when the movie that we came to see actually starts.  And so he did yesterday, of course.
Guardians of the Galaxy was funny and kept us laughing.  I only had to pat Aaron’s leg maybe a dozen times in order to remind him to be quiet……..and whisper in his ear with the same message several times………..and hiss “Aaron!!” maybe five times.  Not bad.  Not bad at all.  
And on his own, he put his arm around my shoulders once until his arm got tired……….and he held my hand twice.  HaHa!  So sweet!  And so unusual for Aaron.  I smiled to myself and didn’t care what others may have thought.  Aaron showing affection is welcome anytime, even in the public theater.
Oh, and he did eat a napkin, I’m pretty sure.  That’s why he turned his head away from me and didn’t answer when I reminded him not to eat a napkin………and then sat there chewing like he had gum but he had no gum.  Oh well.  It kept him quiet for a few minutes.
So the rest of the day, after we got home, was interspersed with watching Guardians of the Galaxy movie clips, talking and talking about this fun movie, and rehashing the whole thing for Gary during supper.  Our favorite character was Rocket Raccoon.  He was pretty hilarious.  And Aaron said the most amazing thing about Rocket later in the evening.
“Mom, I loved Rocket Raccoon!  He always talked what came up to his head!”
Which sounds so much like Aaron, who usually talks what comes up to his head……over and over and over!! 
And I do the same, if I’m not careful.  
Leave it to Aaron to say something like that……..something that leaves me speechless and makes me think about how many times I blurt out what comes up to my head.
Reminds me of a song.  
“Sweet potato pie and SHUT MY MOUTH!”

Too Loud For Quietness


My thoughts lately often turn to the subject of quietness.  I’m not talking about the external quietness that we so often desire.  I get more of that sort of quietness than many people do, especially you moms with young children or those of you that work outside the home.  No, I’m talking about the inner quietness of my heart…….the quietness of contentment and peace, no matter what distractions I have around me. 
This type of quietness is hard to achieve outside of having a deep faith and trust in God.  Yet even though I may give myself daily to the Lord, beginning each morning with a new resolve to stay totally in tune with God and trust Him completely, I often find my heart……my insides……..my thoughts……..churning and stewing over this and that until I drown out the still, small voice of God that calls me to quietness.  
Life happens.  The world keeps turning and the news doesn’t get any easier to hear on most days.  Friends are hurting, neighbors need us, obligations demand us, chores press in on us……….life.  Even the dog needs to be fed!
And for me, there’s Aaron.  Last Monday he was in a terrible mood, but with God’s help I was able to be calm and to defuse him.  A stop for cheddar pasta salad worked miracles, believe me!  I was full of thankfulness, and was thinking over and over about how much God speaks to me through these lessons with my son…………lessons about God’s great love to me when I am most unlovely.  Boy, was that ever driven home the next day when I exhibited my unloveliness!  I totally lost my temper with Aaron, and then was full of guilt and remorse.  That day, I was the one who needed extra love.  And my heart was anything but quiet.
We never know what a day will hold.  There was Wednesday, after the upheaval of Monday and Tuesday, when Aaron had a doctor appointment.  We went to lunch at Chili’s after his doctor visit and just had a delightful time together.  Who would have thought that two hours after this picture was taken, Aaron would be laying in his bed having a huge seizure during his nap?  As usual, there was no warning……..nothing to prepare me or him for that.  And there again was another disruption to my quiet heart.  
 
On Saturday, we had a funnier disruption.  I was sitting on the patio, taking a break after doing some yard work.  Aaron joined me as Gary continued weed eating nearby.  As usual, Aaron was talking up a storm……and the more he talked, the more he rocked in the patio chair.  I looked down for a second and suddenly heard a grunt.   Looking up, I saw that Aaron’s chair had fallen backwards and he was laying in the grass…….laughing, thankfully.  One minute he was rocking and talking……the next he was flat on his back, feet up in the air, and thankfully unhurt.   Funny, but unexpected.
 
I remember when our children were young that there were many times I thought, “Oh, if only I had a day to myself.”  Now the kids are grown and gone, except for Aaron……but he’s gone to his day group every weekday……..during a good week.  Anyway, now I find myself thinking, “Oh, if only I had a day with Andrew and Andrea.  Too bad they live so far away.”   Then there are those evenings now when I think, “Oh, if only Aaron wouldn’t keep talking to me or asking me to do something with him.  If only I had an evening with no expectations or interruptions.”  And many times when I think, “Oh, if only Aaron wasn’t so grouchy……or so loud……or so demanding……..or so whatever.”  In other words, I tend to be pretty demanding myself of what I think will make my life just as it should be.  And out the window goes any hope of a quiet heart as I try to manufacture the perfect life that will create the quiet heart I crave.
I just started reading the book Keep a Quiet Heart by Elisabeth Elliott.  She said, talking about developing a quiet heart in this loud world, that “The secret is Christ in me, not me in a different set of circumstances.”  Wow!
So often I want the different set of circumstances……when in reality, the circumstances I am in are the ones that God wants to use in order to develop in me a quiet heart……..a heart of trust despite what’s going on around me.  A heart of acceptance for what He has allowed and even ordained to be in my life.  
Elisabeth also said, “Every assignment is measured and controlled for my eternal good.  My assignment entails my willing acceptance of my portion.”  It’s how I respond to my circumstances that will dictate my level of quietness and peace………not the circumstances themselves.  Like Paul said, “I have learned in whatever state I am in, therewith to be content.”
I’ve walked with the Lord for a long time, and still I have so much to learn.  I sure am glad that God is patient, even when I’m not.  I still want to tell Him that He’s using the wrong measure for me.  “Lighten up, Lord!” I sometimes say.  Instead I should be accepting and even thankful for what He measures out in my life.  That’s when I know I will experience a truly quiet heart.  
For quietness really is surrender, even while life spirals around us.  It’s Who we surrender TO that makes the difference……not what we’re kept FROM. 
Be quiet…..and know that I am God.

Eating Poison


Every time I get a phone call from Andrea, no matter where I may try to hide so that I can talk in peace, Aaron finds me.  He bugs me to pieces wanting to talk to his sister.  She’s so patient and kind to him as they talk, with Aaron doing most of the talking.  And most of the time, he talks to her about movies that he has seen or is going to see or wants to see.  Then he asks her if she has seen said movie or is going to see it or wants to see it.  
He recently talked to her about the new Teenage Mutant Ninja Turtles movie coming out on August 8.  He wanted to know if she had heard about it and was she going to see it and did she want to see it.  Then he asked her about Shredder……did she remember the old Shredder from the cartoons years ago………had she seen the new Shredder that was coming out in this new movie……..and since she had not seen the new Shredder, then he told her that she needed to look at the movie trailer and see the new Shredder.  
This past Saturday, just as Aaron and I were finishing a game of Skip-Bo, my cell phone rang.  I looked down to see that it was Andrea just as Aaron very excitedly blurted out, “Is that Andrea?!  Can I talk to her?!  Can I?  Just for a minute, Mom?  Can I talk to her?”
I answered the phone in the middle of Aaron’s questioning, so Andrea heard him asking something and she started laughing.  “Is he asking if I’ve seen Shredder?” she asked.  I told her he was, and she laughingly told me that just before she called, she remembered that he wanted her to watch the trailer.  So she had quickly watched the trailer just before calling.  Therefore, Shredder and all the other turtle characters were fresh on her mind as I handed her the phone.  I could hear her laughing, and of course, hear and watch Aaron’s very excited conversation.  It made me smile to listen to the two of them.  
Andrea is so patient and attentive to Aaron as he talks.  You would think she was talking to a colleague about genetic testing or virus samples or research that she’s doing in the lab.  But talking about Shredder or ninja turtles or when the movie comes out seems every bit as important to her as any lab conversation.  And Aaron eats it up! 
 
Aaron also talked to her about the movie he’s watching at home now…..King Kong.  “Andrea, would you say King Kong is a monkey?” he asked.  Then he was off and running, and I heard Andrea laughing yet again while trying to answer his every question.
Oh, and there was one more movie he mentioned.  Purge.  It’s a movie that just recently came out.  Aaron and I saw the trailer for it when we went to see Godzilla.  Purge looks very violent and dark, and Aaron has been interested in it since seeing the trailer.  A couple weeks ago his group went to see another movie and Aaron was quite upset that he didn’t get to see Purge.  We have told him he won’t be seeing that movie, which makes him want to see it all the more.  Typical Aaron.
As Aaron told me all about wanting to see Purge on the day he didn’t get to see it with his group, I tried and tried to make him understand how we felt about that movie.  Finally I said, “Aaron, what if I handed you some poison and told you to eat it?”  He said that would be bad.  I told him that watching Purge would be like eating poison…….it would be bad for him.  He seemed to understand and went on his way.
Here is what he said to Andrea as he brought up the Purge movie:
“Andrea, Mom said how about if you go watch Purge, I feed you some poison?”
WHAT??!!
Which is what I think I heard Andrea say through her laughter.
So if Aaron has told any of you reading this that I said I would feed him poison if he goes to see Purge, I do hope this clears up your shock.  
Maybe that’s why Paradigm didn’t let him go watch it.  Hmmm…….    

The Wrinkles


Aaron likes me to help him get his bed ready at night.  He almost always makes his bed in the morning, but at night he wants me to assist him in making sure that all the covers are pulled up just right.  Then the last thing we do is to cover all the covers with his animal print soft blanket that he got for Christmas.  He loves lots of covers, summer or winter, that’s for sure.
Last night he and I were going through this bedtime routine.  I made sure his long body pillow was centered where it was supposed to be…..that his sheet was pulled up……then his heavy corduroy cover – a bedspread, actually, that his Granny got him many years ago – was tugged into place………then his soft brown blanket had to be adjusted…….and next we shifted and rearranged his pretty red, white, and blue quilted cover that is rarely seen, unfortunately.
That was when Aaron paused and said, “Look, Mom.”
I looked down, expecting to see a spider or an ant or something crawling.  You can see how my summertime mind works.  But I saw nothing.  So there stood Aaron and I, staring down at his bed.  He was looking at what he knew was there, while I was looking at who-knows-what.
I looked over at Aaron and then he pointed as he said, “A wrinkle.”
Oh, yes.  There it was……an offending wrinkle.  Aaron will not tolerate a wrinkle in his covers.  Not a single one.  So I gave the cover a little tug and the wrinkle disappeared…….and Aaron and I happily proceeded on with our task.  The bed was soon made to his specifications and all was well.
Isn’t it something, I’ve thought since last night, that Aaron notices something as mundane and unimportant as a wrinkle in his covers and yet so many important things in life seem to be oblivious to him?  We go in a store and I know to remind Aaron not to whistle…….or make his farting noise with his mouth……and to keep his hand out of his pocket, because he just scratches himself in a most embarrassing manner…….oh, and don’t clap, Aaron!   Those are a few things I tell Aaron.  Other matters come up as we go along, believe me.  
Now to me, these are major wrinkles, but not to Aaron.  Why don’t these annoying traits bother Aaron as much as a wrinkle in his covers?  And why does he love to whack us on our rear end?  He does that to the staff and other clients at Paradigm.  Or give us a robust slap on our back?  Or a pinch, or treat our bodies like they are drums.  These are major wrinkles to us, but not to Aaron.  I sure wish they were wrinkles to him, but they’re just not…….and we can’t make that happen.  
Why does he say obnoxious and even offensive things to people?  When questioned about it, he nearly always says that he was just trying to have fun.  So once again, we explain the concept of fun………and remind him over and over that his idea of fun is not usually anyone else’s idea of fun.  Does he really not get it or is he just stubborn?
Individuals with autism have a very difficult time relating to others.  Aaron doesn’t have filters, so he’ll say or do whatever comes to his mind at the moment.  Some behaviors are repetitive, and others occur at the time he may see something or someone.  We know to be observant when we’re out with Aaron as we try to intercept inappropriate behaviors.  
Aaron, don’t stare at the woman in the wheelchair.  Aaron, don’t say a word about that person’s unusual hair.  Aaron, not a peep about his tattoos.  Aaron, quit staring at her piercings.  Aaron, do not say shut-up under your breath when we pass that fussing child.  Aaron, don’t pull the box of cereal out of that huge display.  I was too late on that one.  I can still hear the sound of those falling cereal boxes in Wal-Mart.  
These are wrinkles, Aaron!!  Don’t you see them??!!
 
Nope.  He doesn’t see these life wrinkles at all.  It’s our job to keep teaching and to keep reminding and to keep damage at a minimum.  And often to keep a red face, depending on what he said or how offensive or embarrassing he was.  
At other times he’s funny.  Even when he’s not so funny, or when others are staring at him the way I tell him not to stare at people, I can smile and hold my head up high………..or try to walk away fast from the situation, with Aaron lumbering along quickly behind me.  HaHa!  We sure are a sight to see sometimes.
A word here, a tug there, some instruction in the hopes that it will stick, and another wrinkle is gone…….only to return, I know.  But we have to keep the wrinkles smoothed out so that Aaron’s life…..and OURS…..is tolerable.  
“Look, Mom.  A wrinkle!”
I know Aaron.  Believe me, I know.

Thanks to Aaron……


It’s been a week since I’ve written anything about Aaron.  It’s not because he hasn’t been active……talking, arguing, laughing, eating…..plenty of eating.  Plenty of all the above, actually.  Here are some highlights of our week:
Conflict and Forgiveness:
Aaron came home last Friday with some anger.  He had a situation with someone and it wasn’t pleasant.  He was animated, bending over and rubbing his hands together as he told me what happened.  Oh boy, here we go.  He quickly conveyed the same story to Gary when he got home, but Gary and I quickly left to meet friends for dinner so there was no resolution at that moment.  It was a topic of conversation all that weekend, which is always the case.  Thankfully, things were made right at his day group.  We appreciate the staff there that care for Aaron and helped him work through it all.  Barb said that Aaron actually took the hands of the person involved and said he was sorry.  Barb was shocked and pleased at that.  I was extremely shocked and wondered if we were talking about our Aaron or someone else!  Wonders never cease……especially with Aaron!  He was so happy to rush in the door that day and tell me what happened.  “Mom!  Me and _______ made up!”   And guess what he said that was so curious?  “But it’s kind of scary to be made up with ______.”  Interesting.  I think he’s not sure that he can keep from getting frustrated again, but that’s a guess…..which is sometimes the best we do to figure out Aaron and his thinking.
Laughter:
We were watching Wheel of Fortune one night, and one of the contestants bought a vowel….an ‘A.’  Aaron yelled, “A!!  As in E I E I O!!”  He sang the E I E I O part like we do in the Old McDonald song.  It was too funny.  But I couldn’t help myself, so I said, “Um, Aaron……E I E I O doesn’t have an A.”  “What?” he replied.  So I repeated, “E I E I O doesn’t have an ‘A’ in it.”   He just looked at me, then cocked his head and stared into space for a few seconds.  “Oh,” he flatly replied.  Two nights later someone bought an ‘O.’  “O!!” Aaron yelled.  “As in (and he sang again), E I E I O!!”  I laughed and he laughed because E I E I O does have an ‘O.’ And all is well with the world. 
An Annoying Ear:
Aaron started complaining one night during Wheel of Fortune that his ear was stopped up and that he couldn’t hear well.  I told him that maybe we need to take him in and have his ears cleaned.  “No!” he loudly replied.  Soon after, he yawned and then happily said, “There!  My ear unpopped!”  The next day it was, “Since my ear stopped up, I have diarrhea.”  I reminded him to check his feeding frenzy list from that day before he blamed his ear.   And the next day:  “When I talk, I can hear my voice in my ear.  I can only hear the voice of me in my stopped up ear.”  Gary and I exchanged humorous glances at that comment, unknown to Aaron.  His ear is a major concern of his now and we may need to have it checked, but we’ve learned that with Aaron it’s best to wait awhile and see how it all works out……because he has a little hypochondria at times like this.  
Wonder:
I went in Aaron’s bedroom to say goodnight.  He was propped up in bed, reading his Handy History Answer Book.  I was nearly ready to leave the room after our goodnight when Aaron said, “Mom, look.  Michelangelo made a bad statue.”   I asked why it was bad, knowing full well the answer.  “Look,” Aaron answered as he held the book for me to see.  “So what makes it bad?” I asked again.   “It doesn’t have clothes on.  That’s strange,” Aaron said as he held it out still for me to see.  There was Michaelangelo’s David in all his glory…..and me trying to explain it to Aaron.  I was glad to say good night and shut the door.
Wonder #2:
On Wednesday, Aaron went with his group to All Star Sports.  When he got home, as he was showing me the toy rifle he picked up somewhere and brought home, and as I was telling him he needed to return it…..good grief!……I saw something protruding out of his pocket.  I asked him what was in his pocket and he said, “Oh,”……as he reached in his pocket and pulled out the something.  It was sporks.  Sporks he had nabbed off the food counter at All Star Sports.  23 Sporks.  Really?  23 Sporks?  Really.  I counted them.  23.
Wonder #3:
Aaron was very excited to run in the house the other day and hold out his hand to show me something as I heard Gary out in the garage trying to finish telling Aaron to bring it back outside.  IT was one of our caterpillars that is eating up our pecan trees.  Aaron was intrigued by IT and really wanted to show IT to me, so I waited to tell him to get rid of IT until I had oohed and aahed over IT with fake enthusiasm.  Aaron loves bugs, just as if he was still 6 years old.  I didn’t want to dampen his joy, but I was very glad when he took IT back outside. 
 
Fun:
Yesterday Aaron was sleeping a little late, so I gingerly opened his door to find him sitting on his bed…….writing in his “Time I Go To Bed and Time I Get Up” notebook.  He wrote down 9:03, and looked at me with bleary eyes.  He was very tired, he said, and even after his shower and coffee I opened my bedroom door to find this.
 
So I decided to have that fun day with Aaron that I’ve told him we would someday have.  We went to the new Sam’s that was opening yesterday.  Aaron got happy real quick, and wasn’t the least bit tired. 
 
 Well, it was worth it to have fun……to see his smile……and to laugh as he listened to the Mariachi band playing fun songs.  He complained that they were too loud, while I loved every minute and wanted more. 
One More Laugh:
This last laugh was this morning, after Aaron drank his coffee and we were taking his cups downstairs.  I guess he got a few coffee grounds in his cup.   “Mom, that coffee you gave me still had seeds in it……like specky seeds.”  
I smiled.  And I wish he could get those specky coffee seeds out with a spork.  We have a few.
Thanks to Aaron, we have sporks.  And a mostly good week to boot.