Where’s The Macaroni?!

I think I may need to hide the macaroni container again.  I’ve done it in the past and now I may need to resort to hiding it again.  Why?  Because Aaron absolutely loves uncooked macaroni, and for some reason will decide out of the blue to focus on that food item.  Once that focus starts, he is not to be deterred.  We often hear him dumping them into one of his plastic bowls.  The loud clatter of uncooked noodles is hard to miss.  Into the kitchen we go, intercepting Aaron’s plot, and so back in the macaroni container go the noodles. 
 
 

I’ve offered to cook Aaron some noodles, but he wants them “raw,” as he says.  He doesn’t understand why we object.  They’re hard on your teeth, Aaron.  They’re hard to digest when uncooked, Aaron.  You’re eating all my macaroni and I won’t have any for dishes I want to make, Aaron.

He doesn’t care.  When he’s on a raw macaroni binge, which might last for days, then nothing we say or do will change his mind.  He’s a proficient sneak and can often have a huge bowl of noodles without us even knowing it.  He definitely knows how to take advantage of times that he’s at the house alone, too, which is by far the best time to have an uninterrupted raw macaroni feast.

Sometimes it’s hard to know if he’s eaten the noodles because there are no signs such as are often left with other foods that he sneakily eats.  There are no piles of individual wrappers…..no bag left in his trash can…..no drips…..no mess.

It’s hard for Aaron to sneak his chocolate milk, for instance, because he always leaves such a mess. 

“How many powders do I use to make chocolate milk?” he asked me one day, his spoon poised over the open Nestle’s Quik container.  He only asked because I happened into the kitchen.  He will use three or four spoonsful of powder if left alone, so it really doesn’t mean anything for him to ask me how many powders to use.  I may as well go outside and tell the oak tree how many powders to use as to tell Aaron.  But I tell him, regardless, and then take the spoon to actually show him that using two helpings of powders is plenty. 

“Be sure you spin it, Mom,” he reminds me as he watches to make sure I adequately stir the powders into the milk.  So I spin the powders and the milk, and then offer to carry it to his room so that there are no chocolate drips left all over the floor leading to his desk. 

Another way he leaves signs of what he has eaten is to look at his clothes.  Macaroni leaves no such evidence, such as I saw on his shirt one recent morning.  I asked him about the brown smudge on his pajama shirt.

“I was drinking my coffee,” he explained.  “I got grounds in my mouth and I had to wash it off with my shirt.” 

Of course.  Please, please put that shirt in the hamper.

He knows that some food temptations are sometimes just too much, such as the recent bout of macaroni madness.  Often, he will give me an item of food that’s in his room at bedtime because he knows that the pull is too strong and that he’ll want to get out of bed to eat when he’s supposed to be going to sleep.  One night he thumped up the hall and knocked on our bedroom door after he had gone to bed.  I opened the door and he thrust a bowl of peanuts toward me.

“Mom?” he asked.  “Could you take this out of my room so you can trust me not to eat it tonight?”

I laughed.  No need to try to explain how I don’t need to trust him if the bowl is NOT in his room.  I just loved the way he worded it.

Back to the raw macaroni.  Aaron knows that when he’s in a macaroni mood, the pull will be strong and he will have trouble resisting.  We were in Wal-Mart the other day, after he had put a large dent in my macaroni container.  Aaron was following behind me, singing, “And heaven and nature sing,” without a care in the world or a realization that he was being observed by all the other shoppers nearby.  But suddenly he was aware that we were in the pasta aisle, so he told me that I should buy more noodles.

“Mom, you should get more noodles because I’m making you lose less macaroni and cheese noodles,” he said as we walked up the pasta aisle. 

I know.  Try to figure out that sentence.  I just kept going.

“Mom!  You passed the macaroni and cheese noodles!” he exclaimed.

Yes, Aaron, and I imagine you’ll be passing them for quite some time.  No new noodles today.

Keep singing!

 

Can I Resign?

I had some nice quiet time as I sat on the couch beside our newly decorated Christmas tree this morning.  I love the early morning quietness, the soft shiny lights on the tree, and my cups of coffee.  Time to think, to remember, and to pray.

Then I heard Aaron getting out of bed.

So the mood changes.  Now it’s time to think of how to deal with whatever mood he has; to remember to be understanding and patient; and to pray for that understanding and patience when I feel it slipping away.

Aaron was sick yesterday with a stomach virus.  He threw up multiple times, but by last night was doing well enough to keep down some applesauce; watch part of the latest movie in which he is totally engrossed; and play a game of Skip-Bo…..beating me, by the way, which made him feel even better.

As he came down the stairs and into the kitchen this morning, I asked him how he was feeling.

“Fine,” he flatly answered.  “Can I have my three cups of coffee now?”

He always includes the number of cups when he asks for his coffee, just in case Mom has forgotten the all-important fact that he always has and always will drink THREE cups of coffee in the morning. 

I then asked him if he wanted to sit for a few minutes by the Christmas tree with me…..and would he also want to drink a cup of coffee as we sat sweetly enjoying the tree.  He informed me, rather reluctantly, that he would sit by the tree but that he did NOT want a cup of coffee to drink there. 

“I want my three cups of coffee in my room,” he informed his ignorant Mom.  Doesn’t she know that coffee, THREE cups of coffee, is only to be gulped down in his room? 

We sat down on the couch, me with my cup of coffee and Aaron with his subtle exasperation that Mom would even suggest that he also have a cup of coffee by the tree.  He was quiet for a minute but of course it wasn’t long before he began with his usual, “Mom?”

I waited.  He says this so often, but he doesn’t really have a plan of what is to follow the familiar, “Mom?”  I waited some more.  “Mom?  Uh……”  So now he was trying to decide what to say, because all this business of sitting sweetly…..and quietly……by the Christmas tree is pretty strange. 

I would love to have heard Aaron say, “Mom?  Do you know why I act so hatefully sometimes at Paradigm?”  Having such a heart to heart with Aaron would have been the best gift ever for me! 

But instead, it was “Mom?  Have you seen pictures of Transformers Revenge of the Fallen on the internet?”  He didn’t even notice my resignation or how I tried to muster a little enthusiasm in order to act even remotely interested in Transformers Revenge of the Fallen.  I told him that I didn’t know if I had seen pictures of Transformers Revenge of the Fallen on the internet, because all of these games and these movies and these pictures just jumble together into one blob of sameness for me.  I didn’t tell him that part about a blob of sameness, though, for fear that he would want to talk about The Blob movie that he and I watched a few weeks ago.  That’s not what I wanted to remember on this morning beside the pretty Christmas tree.

Aaron then got up and went up the stairs, monkey style like he does, and soon returned with his Transformers Revenge of the Fallen guide book.  He knew just where to open it in order to show me Demolisher…..the bad guy, I found out after asking because that’s something else I can never remember…..and Bumble Bee and Optimus Prime…..both good guys…..who came in and saved the day.  Aaron was happy to be talking to Mom about these important matters.  He would not have been happy to talk to Mom about such unimportant matters as his behaviors and motives for such. 

 
Aaron has had some rough days at Paradigm in the last few weeks.  Not every day, but many days he exhibits anger and aggression there.  It’s like he becomes The Incredible Hulk when he walks in the door.  Gary and I try to get to the bottom of it, but to no avail.  He doesn’t act like that at home.  He has issues at home, certainly, but not to the extent seen at his day group.  It’s discouraging and embarrassing and very frustrating to Gary and me.  If only Aaron would talk about it on a heart level, but even Aaron doesn’t really know why he reacts the way he does.  These autism behaviors are like that.  Unexplainable…..spontaneous……disruptive……sometimes hurtful.

This past Monday, Aaron was in a mood when he woke up.  It was because of the bad day he had at Paradigm on the day before Thanksgiving.  That dark cloud was still hanging over his head.  We worked through his issues on Monday and he decided to go to Paradigm.  On the way there, he was very happy to stop with me at Wal-Mart.  I hoped that Aaron would let me pick something up there for him to eat for lunch at Paradigm, but for some reason Aaron usually refuses to take food to Paradigm.  When he told me that he was eating sandwiches offered to him by others, I became so frustrated.  I tried to reason with him, but he wouldn’t budge.  Finally, with a degree of humor, I told him that I wanted to just resign from my Mom position.  I was tired, so just give me the letter of resignation and let me sign it!

Aaron turned and looked at me, and then started laughing…..thankfully.  It was one of those moments when I wished I hadn’t said those words, even in jest, so I was thankful that he saw the humor. 

“You can’t resign from being my mom,” he slowly said.  “You’ll always be my mom.”

“Yes, Aaron, I’ll always be your mom,” I replied.  But some days…..

So last night, after he had been sick all day, I watched him getting his snake and frog and skunk positioned just right in his bed.  I watched him get his covers the way he wants them.  I watched him write down his time to bed in his bedtime log book.  I kept my distance.  No hugging because of germs, I told him.  He just stood and looked at me, then turned to get in bed with no usual goodnight hug. 

“Mom?  Are you gonna take care of me if I did throw up during the night?” he asked. 

There went the tug on my heart as I assured him that I would take care of him.

“So, like, if I throw up you’ll wash my face?” he hopefully asked.

Yes, dear Aaron.  I’ll wash your face.  I’ll look at pictures of Transformers Revenge of the Fallen.  I’ll see that you have THREE cups of coffee in your room.  I’ll see you through the rough days. 

And I’ll tear up those resignation papers.  Because I do love you, no matter what.  And I’ll always be Mom.

 

A Thankful Moment

 

I was winding down a long day of cooking on Tuesday night when Aaron came bounding into the kitchen.  “Mom!” he said.  “Will you print off some cheat codes for me on your computer?”

 

Now the last thing I wanted to do at that point was go down to my computer and start looking up cheat codes with Aaron.  So I pretty well told him that.  But Aaron doesn’t take no for an answer very easily when he’s so set on something as important as cheat codes for his Star Wars Legos game.  I know that about Aaron, and therefore I was soon in my computer chair with Aaron hovering over my shoulder.  He instructed me on what to type in order to arrive at the correct site.  We printed a page but it wasn’t right, so we printed again and thought it was right…..but soon I could see that look on Aaron’s face that told me this looking up cheat codes job wasn’t finished yet.

 

I was really too tired for this.  I had reached that point of bone tired frustration.  I just leaned over then as Aaron typed in the correct information himself.  Sure enough, there on the screen popped up the precise cheat codes that he needed.  It was just two pages.  I clicked the print icon while Aaron gleefully rubbed his hands together.  He held the two pages with as much delight as if he was holding the title to a new car.  I stapled them together and we were done.  Thankfully done!

 

“Thanks, Mom!”  Aaron said.  He thumped with his usual loudness up the stairs to the kitchen, while I more or less dragged myself behind him.  There was the counter full of pot and pans and other sundry dishes that wouldn’t fit into the dish washer, waiting on me to dig in and get them washed.

 

“Mom!” Aaron turned and said.  “Since you helped me, I’ll help you.  I’ll dry the dishes!”  This unsolicited offer to help was a surprise to me.  He was so sweet about it and so sincere that I wouldn’t dare say no…..even though the temptation was there.  His drying skills are sometimes lacking, while his talking skills never are.  I knew he would be halfway drying and all the way talking.  My bone tiredness wasn’t looking forward to that scene.  But the look on his face and the willingness he showed kept me from refusing his offer.

 

I told him that of course he could dry the dishes, but he noticed the time then.  Shower time!  So he hurried off to take his shower with the promise that he would return to dry dishes.  And sure enough, he did just that.  After his shower, he stood beside me with the drying towel and dried each dish to some degree.  And he placed them in a stack on top of the stove or on the counter, laughing at how they might fall over and talking all the while about whatever came into his head.

 

I realized that I wasn’t thinking about how tired I was.  I was enjoying this time with Aaron as he did his part to help.  Then I thought about Pastor Bob’s sermon on Sunday…..how the ten lepers were healed by Jesus, but only one returned to give his thanks to the One Who had healed him so miraculously.

 

It would have been expected for Aaron to hurriedly take his shower and then get right back on his Star Wars game, using his brand new cheat codes, without a thought in the world for dirty dishes that needed to be washed and dried.  But he didn’t.  He knew that I was tired and he knew that he could help.  Plus, it was his way of saying thank you to me for printing the cheat codes.

 

In a sense, Aaron was the one leper who returned to give thanks.  Aaron, who usually only thinks of Aaron, thought of me at that moment.  And he saw a way to say thank you…..a tangible way to express his appreciation to me.  How could I say no to that?  I’m so thankful I didn’t!

 

It was another unexpected blessing from Aaron….a side of Aaron not always seen.  We shared some thankfulness that night during this season of being thankful.  It was good for Aaron, and it was especially good for me.

 

May I remember to not only BE thankful in every situation, but to allow Aaron the opportunity to also express his thankfulness in the ways that he can.

 

Happy THANKSgiving, everyone!

 

Disappointments

Disappointments.  Not a very catchy, interesting title, is it?  Not even encouraging!  But disappointments are universal.  We all have them in one form or another, nearly every day.  At my age, I’ve had enough serious disappointments that I now count my blessings when my disappointments are more along the line of a bad hair day, getting a cold, missing a fun day with friends, or not getting in on a great sale. 

Disappointments related to Aaron usually come in two varieties.  We are either disappointed IN Aaron for some reason, or we are disappointed FOR Aaron.  We are usually disappointed IN Aaron because of his behaviors.  We are usually disappointed FOR Aaron because of something that hurts his heart, and therefore ours as well.

On November 6, two days before his birthday, I was going to take Aaron to one of Paradigm’s residential homes so that we could celebrate with some of his friends.  We were going to take pizzas and have fun.  Aaron was so looking forward to it!  But he came down with a stomach virus and was unable to go.  How disappointing!  We were disappointed for Aaron, very much.

So a week later, this past Friday, we made the same plans again.  But on Friday afternoon, the plans were canceled once again.  One of Aaron’s friends was having a very rough day and it wouldn’t have been a good situation for us to be in the home that night, no matter how much pizza we brought.  It was going to take time for this person to calm down.  In fact, this client had some words for Aaron during the situation, much like Aaron does when he has a meltdown, and it really hurt Aaron’s heart.  And it hurt and disappointed us, too, for Aaron.

All of this made Aaron act out.  He banged on the car that brings him home, making a small dent in the front of the car.  He yelled at me when he got home, escalating as I tried to talk to him.  He looked in his Friday goodie bag that sat on the kitchen table, and then knocked it on to the floor.  This is Aaron’s way of handling his own disappointments.  Instead of talking about his hurt, he becomes angry.  Talking only makes him angrier, especially my talking to him. 

I had two disappointments going on that evening.  I had my disappointment for Aaron as I was hurt for him in his hurt.  And I had my disappointment in Aaron…..in his behaviors that can’t be allowed, but sometimes can’t be stopped.  His defiance was understandable but unacceptable.  I hid his goodie bag from him as a tangible sign that his behavior was wrong…..and I wished with all my heart that he could just verbalize his disappointment instead of acting it out with harsh words and defiant behavior. 

He finally settled down enough to show an interest in going out to eat dinner instead of yelling, “NO!” as he had earlier.  So before long we met Gary at Outback, where we enjoyed dinner together and especially enjoyed seeing happy Aaron return.  In fact, before we left the house to meet Gary, Aaron said, “I’m just disappointed.”  Wow!!  Victory in three little words!  Aaron expressed his disappointment verbally and I praised him for that as I told him that I understood, and that I shared his disappointment.  I shared it so much that I even watched The Blob movie with him that night.  That movie brought me to a whole other level of disappointment, trust me.  It was painful!!  But Aaron was happy!

He had a rough morning yesterday, Monday, as he returned to Paradigm.  But the afternoon was much better.  Today he got up very early, and at 6:11 I was in the kitchen listening to him talk about The Blob movie that we had watched.  I’m sorry, but 6:11 is a little early to be handling talk about The Blob.  I’m still not over that movie.

Our morning went well, and I was happy for Aaron to be so happy as I dropped him off at Paradigm.  But shortly before 2:30 I got a call.  Aaron was having a seizure.  I had just gotten home from spending the day with my elderly friend, so I was thankful that I was free as I drove to pick Aaron up at his day group.  Poor Aaron!  Another disappointment, this time more for me.  Disappointment for Aaron as he faces these awful seizures……his badly bitten tongue…..his headache…..the interruption in what should have been a good day.  He handles it so well, thankfully unaware of how sad I am for him.

This morning, as I had my quiet time, I did what I sometimes feel compelled to do.  I asked the Lord, as I turned the pages in my Bible, to give me a special word…..something He knew I needed on this day.  Today I flipped from Romans, where I have been reading, back to the first place my turned pages led….to Malachi.  And there in Malachi 3:6 I read these words:  “For I, the Lord, do not change.” 

Simple words, but I knew they were somehow for me today.  As I drove home with Aaron beside me, his breathing having that certain post-seizure sound, I looked up at the sky as very dark clouds rolled in.  There was a mix of bright blue, but coming in were the dark stormy clouds that promised rain.  Our day was changing from bright sunshine to dark cloudiness, just like my day with Aaron had gone from bright happiness to dark seizure concerns. 
 
Disappointments.  Changes.  We face so many of those, don’t we?  And I didn’t wonder anymore why God gave me that random verse this morning in the little book of Malachi.  “For I, the Lord, do not change.”  So in the middle of disappointments, whatever they may be…..and in the middle of the changes that those disappointments often bring…..we can as God’s children stand firm in God’s promise that He does not change.  Ever.

Just stop and think about what that promise means.  God never changes.  He is always the same, loving us and instructing us and being there for us.  No amount of world changes, of family changes, of my own changes….and the disappointments they bring….will ever change God. 

I’m very, very thankful for that promise today.  I’m very thankful that God gave it to me…..humbled, really, as I always am when God speaks to me so kindly and specifically. 

One more thing.  I’m never disappointed in God.  Never.  And I know that He will see us through all of our disappointments, including the ones IN and FOR our Aaron.     

From God’s Heart to My Lips

Was it just last weekend that I flew home from a wonderful vacation week in Alabama?  It seems much longer than a week.  There are reasons for that.  But first, I did enjoy a great time of relaxing with my dear friend Glenda in her beautiful home.  Bruce and Glenda are friends of ours from way back.  Gary and I met them at Gary’s first assignment following his graduation from flight school in 1983.  We did lots of life together in Colorado Springs while stationed at Fort Carson, and then later as we both lived in Germany.  It had been 23 years since we last saw each other.  Bruce and Glenda very kindly flew me to Alabama for several days of rest and relaxation.  We took up right where we left off, too, not missing a beat.  Glenda and I talked a blue streak last week, and I think we pretty well caught up on everything.  It was really a refreshing time for me.

In the airports and on the planes, I finally finished reading Ann Voskamp’s book, One Thousand Gifts.  What a challenging book this has been for me!  Challenging me to be thankful….grateful…..in all situations.  Our friends, Kurt and Jill Grier, gave me this book while Aaron was in the hospital last June.  What a perfect setting for this insightful book to be given! 

So flying home last Saturday, I finally finished this book.  At the very end, Ann wrote this:  “Every breath’s a battle between grudgery and gratitude and we must keep thanks on the lips so we can sip from the holy grail of joy.”  There is a reason that God let me read that line on that day…..the day I was flying home…..to life at our house.

I heard him before I saw him.  I was near the escalator in our beautiful new Eisenhower Airport here in Wichita.  Home at last.  I was focused on that down escalator when I heard, “MOM!!!” 

I looked over to my left, and there was Aaron.  He had just bounded off of the comfy chair where he was sitting near Gary as they waited for me to round the corner.  How appropriate that the very first word I heard when I reached home was that word that Aaron says the most.  Mom!

His smile was huge as he came toward me, rubbing his hands together in great delight.  Delight to see me?  Yes, in his own way.  But more delight, I believe, in the fact that he could finally tell me in person what he was anxiously waiting to say.  “MOM!!!  I finished watching…..”  And he was off, words tumbling over each other as he told me about the latest movie he had just completed.  Aliens and battles and robots and laser vision…..all of it, coming out in a loud rush. 

He had no interest in my trip home.  He only cared that I WAS home.  He did give me a hug as I reached out to him, but he didn’t stop talking.  Gary and I hugged and kissed to our typical background music of Aaron’s constant talking.  We’ve learned to jump in quickly between his words in order to say our own to each other. 

There is no slow re-entry into life with Aaron.  He blows in with no interruptions allowed, words and hands flying, expecting us to show great interest.  And we opened the door at our house to our large dog, to Aaron following and talking, to trick-or-treaters, to the time change, and to me coming down with a stomach bug that evening.  Interesting.  What was that quote I had just read?

It gets better.  And let me again quote dear Alice Zwemke:  “I’m not complaining.  I’m just reporting.”  This week….

On Monday I took Aaron to the dentist for a cleaning.  A small cavity was found.  On Tuesday, I took him back to the dentist for a filling.  He was a little sullen and quiet (thankful for the quiet part!) on Monday, but on Tuesday he was full of smiles and talk.  He even carried in his Happy Spider from Hawaii that Glenda had sent him, and kept Happy Spider on his lap while he got his tooth repaired. 

 
By that evening, Aaron still had a crooked smile from his tooth procedure.  The dentist said not to worry, and sure enough by that night he had returned to normal.  So on Wednesday he was able to finally return to Paradigm, his day group, even though he complained of not feeling well.  That afternoon he had a big seizure there, so I went to pick him up, carrying clean clothes since he was incontinent during this seizure.  He had another seizure shortly after going to bed that night. 

On Thursday, he woke up with my stomach virus that I was kind enough to share.  Between bathroom visits, he slept nearly all day.  No Paradigm.

Yesterday, Friday, he still wasn’t feeling great so he stayed home again.  No Paradigm.  By the evening he was more himself, so I foolishly let him enjoy his pizza night.  I felt sorry for him because we had planned to have a pizza party at one of Paradigm’s residential homes with several of his friends on Friday, and we had to cancel it.  It was an early birthday celebration for him.  So pizza it was, at home……which he later threw up as he sat in his chair in the family room.  Poor Aaron.

And I now have a chest cold.

So here we are.  Life at its best, right?  That quote again….we must keep thanks on the lips.  I’ve been practicing that attitude this week as best I can, failing at times but also so aware of the power of gratitude that is so dear to God’s heart.  From God’s heart to my lips.

I’m thankful for our washing machine and our dryer; for bleach; for hot water; for Aaron’s excellent waterproof mattress pad; for Gary’s hard work in providing for us so that I don’t have to work; for our gorgeous fall colors to enjoy as I look out the windows or drive around town; for our large kitchen trash can last night during the throwing up episode; for not being in the hospital like some I know and love; for all of this happening while I am home and not out of town; for God’s forgiveness when I fail; for the love of friends and family…..and for so much more.

For Aaron, who just rolls with the flow….which is a pretty yucky saying right now, actually.  Sorry.  Anyway, he handles things better than most.  He’s more concerned with his routine than with his disappointments.  I’m carrying the disappointments.  He carries the changes to his routine.

“Mom, I’m going to bed now,” he said on Wednesday night.  “I’m not going to bed at 10:00.”  It was 8:23 when he laid down and I turned off his light.  But soon I saw the light from under his bedroom door.  I asked if he was ok.  He told me that he was fine…..that he was just writing down what time he went to bed in his log book.  Well, of course.

Aaron showers at 8:00 or a little later every night. He showered in the late afternoon on Thursday.  “Mom?” he asked.  “Because I just showered, does that mean I have to shower by 8:00 tonight?” 

Wheel of Fortune is still being turned on at 6:28, not 6:27, though….so that’s a good thing.  And Mom must be reminded to wait on the coffee maker to perk more coffee in order to fill that third cup before carrying them up to Aaron’s room.  One doesn’t take TWO cups of coffee to Aaron’s room.  It must be THREE cups, for crying out loud. 

Sometimes Aaron weighs us down on many levels.  But I’m thankful for the blessings that are many, the smiles that are frequent, and the laughter that comes unexpectedly. 

“Mom!!” he said the other morning as he stared down into his empty coffee cup.  “Why is there coffee bean powder in my cup?”

See what I mean?

 

 

Shake and Toss

I remember when Aaron was just a little guy and we were stationed in Germany.  Boxes of gifts from family would arrive before Christmas, full of presents for all of us.  It was so exciting to place the bright packages under our little tree and see the happiness on the kid’s faces as they especially noticed each gift that had their name attached.  On Christmas morning, we would open our gifts and watch with the delight that all parents experience as our children could hardly contain their excitement.  It was a time of pure joy!

But Aaron quickly learned something about his gifts.  Some of his presents contained clothing.  Others contained toys.  Toys tend to rattle.  Clothes don’t rattle.  So smart little Aaron would pick up a gift and give it a shake.  If all was quiet inside the box, he would then toss it over his shoulder and move on to the next one.  It really was hilarious.  We caught him in the act on the video that we were making.  Shake and toss.  Shake and open.  Shake and toss.  And Aunt Sandra, after seeing the video that we mailed to her, declared that she would never send another gift of clothes to Aaron ever again! 

We laughed and laughed over that.  “But wait,” I said.  “Clothes are wonderful!  Maybe not to Aaron, but to us they’re great!!”  Gary and I knew the value of  clothing for our children when we lived under a tight budget.  Aaron could care less, but he just didn’t understand their importance. 

Life’s gifts come in all shapes and sizes.  Some we know right away are amazing and will be treasured forever.  Others are uncertain.  And then there are those gifts that we want to shake and toss away.  Gifts of hardship and pain……gifts that aren’t fun…..that definitely weren’t on our want list. 

I recently received a wonderful gift from some old friends of ours.  We came to know Bruce and Glenda at our first military duty station in Fort Carson, Colorado.  Then we were also stationed near each other in Germany.  Our kids played together when they were very young.  Bruce and Glenda live in Alabama now, and are flying me there to spend a few days.  I haven’t seen Glenda in years, though we’ve stayed in touch.  It’s a gift that I didn’t need to shake!  I knew right away what a precious gift it was.  I leave today, in fact, and am so looking forward to this getaway with a dear friend. 

Another gift of mine, in his own amazing way, is our Aaron.  Of course, he’s our son and I love him with all my heart.  His special ways of living life due to his seizures and autism, however, make him a very unique gift.  Trust me, there are plenty of days that I wonder about this large gift of Aaron.  There are many times that I want to shake and toss.  I want to shake and toss Aaron!!  But those moments are always balanced by the spurts of joy and laughter that he brings into our lives.  He’s the whole package, that’s for sure!

For instance, last Friday we were listening to a CD on our way to his day group.  He likes it when a song totally ends before he gets out of the van at Paradigm.  As we pulled up to the curb on Friday, the song seemed never ending.  I had errands to run and then an appointment at 1:00, so I finally told Aaron that I really had to go.  I told him that he could finish the song the next time we played this CD.  Aaron didn’t like that idea at all, but he finally agreed.  However, to register his disapproval, he gave me a resounding hit on my arm before he left the van.  It hurt!  And it made me very angry.  Yet off he strode as if nothing at all was wrong.

I drove away in frustration.  See what I mean?  Aaron can go from happy to hurtful in a flash.  It was a time I really would have shaken and tossed that gift.  Yet I know better.  I know that God gave us Aaron and that he is indeed a beautiful gift, not to be shaken and tossed, but to be opened and enjoyed.  It sure takes a lot of patience sometimes, though!  More than I often have on my own, for sure. 

Yet that evening, Aaron bounded in the house with a little wrapped butterscotch candy in his hand.  His driver, Paulette, had given Aaron a wrapped candy and then gave him one for me.  Aaron was so excited to give me this little candy, and wanted me to eat it right away.  It was close to supper and I told him I would wait.  Aaron made sure, for the rest of the evening, that I didn’t forget his gift to me.  He talked and talked about that candy. 

“It’s one of those sucking things,” he described.  And he ran up to my desk that night to retrieve the piece of candy and bring it to me, hovering nearby until I finally ate it. 

Aaron can go from hitting to hugging in no time.  From grouchy to giving.  His gifts are all over the place, but each one I must receive and enjoy.  Well, not always enjoy but at least try to understand and appreciate.

He stood in front of me one evening like this.

 

“Take a picture and send it to Andrea!” he said.  So I did just that as we both laughed at his silliness. 

He just came downstairs this morning.  One of the first things out of his mouth?  “Mom? What do you think of Megatron and Optimus Prime versing each other?”

And we’re off and running, as always.

I’m still unwrapping all the layers of this Aaron gift that we’ve been given.  And remembering the verse that I read this morning.

“For from Him and through Him and to Him are all things.  To Him be glory forever.  Amen!”  (Romans 11:36)

No shaking and tossing allowed.

 

The Answered Prayer

When Gary and I travel without Aaron, we must find a caregiver for him.  Plus we have Jackson, our 185 pound Great Dane.  We’ve had some wonderful caregivers over the years for both of them, but of course Aaron is our main concern.  Those that have cared for Aaron usually move on to their very busy college lives, their full time jobs after college, or to marriage with families of their own, so keeping caregivers is no easy task. 

A couple weeks ago, Gary mentioned that he sure wished it was easier for us to just pick up and go visit our other two children.  Andrea lives in Houston and Andrew lives near Indianapolis.  I realized that I hadn’t been making our caregiver issue a matter of prayer lately, so on that evening that Gary made his comment, I began praying about it again.  There are times that we can, and do, take Aaron on our trips.  But there are other occasions when it’s best for just Gary and me to go. 

The day after Gary made his comment, and I started praying, I shared my prayer concern with a friend in Texas.  I also shared it with Andrea on the phone that evening as she and I talked.  While Andrea and I were on the phone, I heard my text message notice buzzing in my ear.  I waited until Andrea and I were off the phone before checking my message.  I pretty well stared down at it in disbelief and praise.  You see, it was from our friend, Holly.  Holly watched Aaron some last spring.  She’s an excellent caregiver, but I thought that she was too busy with college and work to be able to watch Aaron anymore.  I hadn’t contacted her at all, or even said anything to her mother who is a good friend of mine.  So what did her text say?

She said that she just wanted me to know that if Gary and I ever wanted to get away, and if we needed someone to watch Aaron, that she would be glad to do that.  Wow!  I just stood there and thanked God for that very quick answer to my prayer.  It was such a direct, almost immediate answer to my prayer that it left me humbled and amazed.  Gary and I both recognized God’s hand.  So now what were we to do?

Andrew works for an NHRA race team.  They were having a race in less than two weeks in Dallas.  Last year we went to Houston to see Andrea, and then she went with us up to Dallas for the last day of racing.  Was God wanting us to do that again?  Would it even work out?  We checked with Andrea and she was excited at the prospect of us coming.  Andrew was as well, so we lined everything up with Holly and off we went to Texas.  God had answered and provided, and we felt confident that this trip was for a purpose.

That’s when things started happening.  Maybe I should make a list.

·         Holly lost her phone on the morning that we left and had to get a replacement.

·         Andrea hasn’t quite recovered from double pneumonia that she had in July.  She started feeling bad again just before we came, so she ended up not going to Dallas with us on Sunday.

·         On Friday night, Holly got a stomach virus.  She threw up seven times that night!  And she was trying to take care of Aaron.

·         On Saturday, Holly let her grandparents watch Aaron so that she could rest and recover.  Dennis and Freda are friends who know Aaron, and they did a great job. 

·         Holly did recover, but on Sunday Aaron had a seizure.  Holly knows seizures well because of her little brother who has seizures, but we felt terrible that she was having to go through this.

·         Gary and I went on to Dallas on Sunday, talking to Holly regularly and checking on Aaron.

·         Andrew’s driver, Cruz Pedregon, lost during the first run…..3.96 to 3.94.  That meant that the team would be cleaning and packing up to leave for Indy early Monday morning…..which meant that we wouldn’t really get to spend any time with Andrew.  So we decided to just head back to Wichita, feeling the need to check on Aaron anyway.

·         We ran into a huge traffic jam south of Ardmore, Oklahoma.  It put us an hour behind. 

·         My phone mysteriously died for a few hours.

·         And I even found a lone fire ant bite on my foot….a souvenir from Houston!  HA!

OK, now I know that none of these events are life changing, horrible things.  Why am I even writing about this?

I’m writing about it because the craziness of our weekend…..the stress that these happenings created for us….didn’t seem to match our amazing answer to prayer.  That answered prayer….the prayer for a caregiver….was the reason that we took this trip.  So if God provided answered prayer and the means for us to take this trip, why did so many things seem to fall apart?  Shouldn’t we have gone to Texas and just had the best time ever, with no worries?

I admit that I was scratching my head a few times, wondering why God seemed to push us out the door.  “Go, go!” he seemed to be saying.  And then to have so many things go wrong…..things that caused us some worry and kept our minds occupied on those worries to some degree. 

I have felt like God was trying to show me another element of trust.  I know I need to trust Him when He opens doors, but then allows some bad things to happen that make me question whether the open door was one through which I should have walked.  I needed to trust that God knew what He was doing when He led me to that open door.  God also knew what He was doing when He let so many things go haywire when we needed them to go smoothly.  Or we thought we needed them to go smoothly.

Answered prayer in the way that we want it doesn’t guarantee a trouble free life.  I may never know why God wanted Gary and me to take this trip.  I may never see all the connected dots that God sees….for me, for Gary, for Andrea, for Andrew, for Holly, for Aaron.

There were wonderful memories made.  Time with Andrea:
 

 

Time with our little granddogs:

 

 
 
Time with Andrew, though brief:
 

 

We had precious talks and laughter with Andrea.  We got to see the pit crew at the race form a circle and pray together right there in the pit area….and have Andrew tell us that he and Jay got that practice started.

And we had to laugh at Aaron as he tried to adjust to Holly being sick.  “Mom!” he exclaimed.  “I didn’t expect you to have someone here who is SICK!!” 

Let’s talk about the word “compassion,” dear Aaron.  He did go to Holly’s room three times on Saturday to say goodnight, and on the third time, instead of calling her crazy, he gave her a hug.  Very sweet!

Will I pray specifically again?  Absolutely!  God loves our specific prayers.  Next time though, when He answers, I might just say, “OK, God, are you 100% sure of this?!”  J 

 

Getting Aaron

I ran into Great Clips this morning, taking Aaron for another haircut, shave, and beard trim, and who greeted us but Erin!  Erin has worked there for quite awhile.  Erin loves Aaron, if you follow me.  She’s a mom, and just a very sweet person who genuinely loves seeing our Aaron.  So it’s always nice when Erin cuts Aaron’s hair! 

Erin is one of these people who just gets Aaron.  She was genuinely happy to see Aaron as we walked through the door.  She talks to him while she cuts his hair, asking him questions and interacting so well with him.  I just love having people like that in Aaron’s life.

 
I can tell very quickly if someone gets Aaron or not.  You don’t have to totally understand Aaron to get him.  Is this making sense?  There are just some people who from the first moment they encounter Aaron, are relaxed and accepting of him.  And there are others who look at Aaron like he has an alien head or something…..although Aaron would think that having an alien head is pretty cool. 

For instance, Friday evening Aaron and I went to Little Caesar’s for pizza.  The line at the take-out window was long, so I decided that Aaron and I would go inside to grab our pizzas.  As I parked, I gave Aaron the usual directions…..wait for me, don’t barge in the door, if there’s a line then don’t push ahead, please don’t clap, and please talk SOFTLY!!  Of course, I was trailing behind him as I finished my instructions and he was barging in the door.  Oh well.

Thankfully, there was no line, so Aaron had free rein to walk up to the counter, lean way over and loudly say, “Can I have some breadsticks??!!”  I was tugging Aaron back while reminding him to talk softly and also reminding him that I already told him he could have breadsticks…..when I turned and saw the cashier’s face.  She was staring a hole through Aaron while she wore totally no expression on her face.  There was no emotion at all from her.  She looked at Aaron like he was perhaps an alien, but a very boring alien.  Like she was thinking, “Who are you and why are you in my store?”   

Aaron was very excited and happy, totally oblivious to this girl’s cold stare.  He continued to interrupt as he loudly asked if we could get TWO pizzas as well as breadsticks.  Her eyes went from me back to Aaron, with her impersonal cold stare once again.  At times like that, I’m very thankful that Aaron doesn’t get social cues.  This girl didn’t get Aaron, but Aaron didn’t get that she didn’t get him, so in that respect all was well. 

But all was not well in my spirit.  I wanted to give her nose a little pinch and then deliver a lecture, but of course I didn’t.  And I know that maybe she was having a bad day.  Yet really, deep down, I just know that some people get Aaron and some people don’t.

Tuesday for lunch, Aaron and I met his case manager at Applebee’s for his yearly PCSP meeting.  Barb, from Paradigm, was there as well.  Aaron is as comfortable with Barb as he is with me, so she understood Aaron’s whacks on her arm, his too tight squeeze of her hand, and how he helped himself to some of the chicken on her salad.  It was our server, though, whom I especially noticed.  She made eye contact with Aaron, smiled at him, listened to him, and was genuinely relaxed with him.  I even looked at Barb and whispered, “She gets Aaron.”  And Barb knew just what I meant. 

When someone understands Aaron, it’s as obvious as the nose on their face….like that little girl’s nose that I wanted to pinch.  J  But it’s very obvious to me when a person understands Aaron, and even accepts him just as he is.  Sometimes being in public with Aaron is embarrassing, honestly.  He’s large, and loud, and totally blind to the effect he has on others by being “out there” with some of his behaviors.  He might point at someone because of their hair or whatever.  He might turn around in the restaurant booth to see what the people behind him are eating or saying.  He might stop to stare at their plates as we walk out of the restaurant.  And if he goes to the bathroom by himself during our meal, it’s very interesting to watch people’s faces as he walks by, his head high and arms swinging, often making funny noises with his mouth.

So when someone gets Aaron, I find myself relaxing some.  It’s as if I don’t feel the need to explain, which I usually don’t do anyway.  I shouldn’t have to explain Aaron.  He is who he is, in all his boldness and uniqueness.  But I’m human and I feel my face getting red when Aaron does something a little crazy that draws attention to us.  It’s nice to see others understand him even if they don’t really understand…..to accept him…..and especially to enjoy him. 

Having Aaron in my life has taught me to try hard to show understanding to other families I see who are probably uncomfortable in public.  I remember when Gary and I ate dinner at a local restaurant with some friends.  Our table was near a mom and dad who were eating dinner with their special needs son.  I noticed their son immediately.  He was stimming in his unique way, and I just knew what they were feeling.  I could see it on their faces, especially the dad.  So I finally made eye contact with the mother, and I smiled at her.  I pointed to myself and shook my head yes.  She was a little confused, so I just stood up and walked over to their table.  I spoke to her and her husband, and told them who I was…..and that I had a son much like their wonderful son.  They both visibly softened and relaxed.  They were so happy that I understood and that I spoke to their adult son, and that I got it.  That’s what meant the most to them….the fact that I got their son. 

So when you’re out and about, and you see an Aaron…..or most likely, when you HEAR an Aaron…..just smile at the parents with genuine love.  Even when their Aaron might pull one of the lower boxes of cereal out of the huge cereal box display….and mom stands there with fallen cereal boxes all over the aisle….smile and maybe even offer to help pick them up.  Yes, that happened to me.  And the help of a sweet teenaged boy was such a blessing that day!

There are special people all around us who need us to get them.  There are families of special ones who will feel a huge weight lifted off their hearts if you are that person in their lives. 

I get it!  You can, too.

Lessons From the Back Yard Walk

Sunday was a beautiful fall day here in Kansas.  We’ve enjoyed many gorgeous days recently.  Now the leaves are beginning to turn, the grass is browning in certain spots, and there’s just that autumn feel in the air despite the warm temperatures during the day. 

On Sunday afternoon, Aaron wanted to take a walk.  I thought about going to a nearby park, but I just didn’t feel like driving there.  I had things I needed to do at home, like wash Jackson’s bedding after bathing him outside…..and football, I’ll admit.  I was feeling a little guilty about not taking our walk in a park as Aaron and I set out to take a stroll around our back yard, Jackson trotting happily around us.  He loves taking walks, no matter where it is.  And our back yard is good for him with soft grass to pad his paws and to protect his aging joints.

Our back yard is large, so we have plenty of space to walk.  We can take our time….it’s rather secluded…..and we can sit on our picnic bench under the old oak tree as we relax near the end of our meandering.  Yet still I felt a little guilty for not getting out somewhere else.  It just seems more exciting to go to Swanson Park or Sedgwick County Park.  Staying at home feels a little dull…..a little common…..unfulfilling, in a way. 

Yet as Aaron and I walked, with Jackson sniffing all around and eating some of his favorite grass, I soon noticed some very pretty little lilac flowers growing near the area where our neighborhood lake backs into our property during the wet season.  It’s all dry now.  The frogs and turtles are not to be seen.  But these little lilac flowers were plentiful and pretty, grabbing my attention.  I stopped to admire them, pointing them out to Aaron. 

 

Then I saw these beautiful scarlet plants growing nearby, as we rounded the bend in the yard. 

 

And on the tree line were these berries, colored a soft blue, growing on our evergreens.

 

There were leaves turning a bright shade of yellow.

 

And red berries growing in abundance, reminding me of Christmas soon to come.

 

We worked our way up to the vegetable garden, which is normally gasping its last at this time of year.  And even though we were surrounded by brown ugliness, the remains of dead squash, and plentiful weeds, there were still signs of life and beauty when we took the time to pause and really look.

There was an okra bloom.

 

An eggplant still flowering.

 

Some tomatoes nestled away, ready for picking.

 

And the cutest little ladybug!

 

Aaron and I sat on the picnic bench for awhile, with Jackson still exploring and smelling everything of interest.  I loved the breeze, the smell of the air, and the time with Aaron.  As I sat there, I thought about how much beauty is in our old normal back yard.  We’re so used to it here that sometimes I don’t take the time to stop and really look around.  Time to really see what lovely blessings I have in our own plain back yard.  It’s really not necessary to think I must always go somewhere else for a fulfilling, beautiful walk when I can walk out my back door and see our own beauty right here.

Sometimes the mundane becomes just that……mundane.  I fail to look around and fully appreciate all the beauty that God has placed in my life.  I especially have those feelings during stressful times, or during times when I compare my life with others who seem to have it “better.”  We live in a world where we are bombarded with how the new and the different is what we need. 

Yet all around us, in our own lives, we can see wonderful things if we but pause and really look….if we look with open eyes and grateful hearts.  We don’t always need to have something bigger and better to be happy.  True contentment comes in being aware that we are just where God has placed us, for just this time in our lives, for the purpose of praising Him and showing others Who He is.  Pointing out God’s goodness and His grace as we walk in the mundane.

And the mundane will become a gorgeous display of God’s finest color in our lives!  For you see, nothing is mundane with God.  Even our lives, sometimes dreary and full of burdens, are a picture of the grace and beauty of God.  When we grasp that fact, then it’s easier to pause and see more of what’s in our own back yard.  There are simple, sweet pictures all around us of beauty and blessing if we but take the time to look…..to ponder…..to appreciate the usual as being the exception. 

I am truly a blessed and privileged person, every single day and in every single setting.  Home, hospital, doctor’s office…..alone or with others…..healthy or sick…..hungry or full……motivated or depressed. 

David said it perfectly in Psalm 34.  “O taste and see that the Lord is good!”  And again, “…they who seek the Lord shall not be in want of any good thing.”

Even in our own back yard!

 

Name Your War

We recently renovated Aaron’s bedroom.  It’s fun to have newly painted walls and ceiling, new closet doors painted a little darker than the walls, new valence and bedspread, new ceiling fan, the furniture moved to new positions, and new organization to Aaron’s clutter.  I bought some really pretty bins that are a tough woven fabric with a bright fabric lined interior.  They are a deep gray color and blend in nicely with his light gray walls.  One of them fit perfectly in Aaron’s night stand opening.  Not only that, but his Handy Answer books fit in that bin perfectly, and even left room for Aaron’s bedtime log book on top.  Perfect!  I was delighted!

But Aaron…..not so much.  He has adjusted to everything in his new room, but there is one area in which he will not budge.  You see, I want Aaron’s floor beside his bed to look like this:

 

Yet Aaron insists on keeping his books that he is reading, as well as his bedtime log book, like this:

 

I want things one way.  However, do or die, Aaron insists on keeping his books in their line beside his bed.  On the floor.  Not in the nice, orderly bin that I purchased for the purpose of keeping his room and floor neat…….but on the floor.  I’ve quit fighting it.  We could have the Books on the Floor War for the rest of our natural lives and nothing would change Aaron’s mind.  Of this I am certain.

The Books on the Floor War isn’t the only battle we fight.  There is also the Is the Plant Real War.  I turned around for a split second at his last doctor appointment while in the waiting room, so at the elevator Aaron held up a leaf…..a leaf that he had just pulled off the plant in the doctor’s waiting room. 

 

“Mom!” he excitedly said.  “That plant is REAL!”

No kidding, Aaron.  And he heard once again the lecture that goes along with the Is the Plant Real War, but I knew my brilliant wartime lecture was falling on deaf ears. 

We also have the Grey Spot on the Sock War.  I don’t know why Aaron insists on wearing the heel of his sock up on the top of his ankle.  I have instructed, demonstrated, assisted, and again lectured…..but to no avail.  More often than not, the grey heel is terribly misplaced, but Aaron doesn’t terribly care.  Actually, he doesn’t care at all.  And he doesn’t understand why I do care. 

Then there’s the Take Things Off the Kitchen Counter And Come Show it To Mom War.  Does he think I don’t know what’s laying on the kitchen counter?  Saturday he came downstairs where I was watching football.  He stood right in front of me, holding up a stick of butter that he had just nabbed off the counter as he walked through the kitchen.

 

“Mom!” he said.  “This says salted butter?  Then it must be sweet!” 

I laughed, and Aaron thought he had won this battle of the Take Things Off the Kitchen Counter and Come Show it To Mom War.  So he launched right into the If It’s In My Hand I’ll Let Jackson Sniff It War, and another mom lecture ensued. 

Finding humor in the way Aaron thinks and acts is one way that I get by from day to day.  He truly makes me laugh a lot, yet there are many times that I really do want certain areas of his life to be more orderly in ways that matter.  I wish that Aaron’s reactions could be as disciplined as a picked up floor, for instance, but there are occasions that his emotions become messy and even painful. 

Such was the case yesterday.  The set-up actually began the day before that, on Wednesday.  Aaron woke up for some reason at 5:09, he said.  Of course he would be so precise.  He went to the bathroom but said he couldn’t go back to sleep, so he went all day with no nap and by that evening was very tired.  Then the next morning, yesterday, he was sleeping soundly when I finally had to get him up to get ready for his day.

Waking Aaron up is usually not a good way for him to start his day.  He was pretty grouchy before we left for his group, but he buckled down and went.  However, on up in the day he had a meltdown with Barb.  He was very belligerent with her and vocal.  He also broke his watch….again.  When he came home later, the first thing he did was to ask me if I had heard what had happened.  I hadn’t, but I could tell from his stressed look and his tired eyes that it wasn’t going to be a pretty story. 

Aaron also shared it with Gary later as they walked around the yard.  I just watched them and thought of poor Gary, handling issues at work all day and then coming home to hear another war story of Aaron’s.  Yet it’s what we do as parents….what all parents do….although at our age we did think we’d be done with all this “stuff” that needs our wisdom and patience. 

We want Aaron’s life to be neat, with everything in its place, like books in a bin.  Aaron had been very happy for a couple weeks, maybe longer, and we were really enjoying the reprieve.  But autism and autistic behaviors don’t just disappear into a neat bin beside his bed.  I had seen the warning signs and I was right.  Aaron hit the proverbial wall and pieces were now scattered all over.

Gary and I helped him pick up those pieces as best we could.  So did Barb as she texted me and told me to tell Aaron that she loved him and would be happy to see him tomorrow.  “He has had many good days,” she texted, “and tomorrow is a new one.”

She was right.  I had to remind Aaron of that fact as he came downstairs this morning with a stormy look on his face, saying he didn’t want to go to Paradigm because of what happened yesterday.  We had to work through it this morning, with me being careful not to escalate this angry time into a War of Words.  He came out swinging, too, as he realized that I was checking the time of the West Virginia/Oklahoma State football game for tomorrow.

“I vote for Oklahoma!!” he declared…..hoping that he had wounded me.  He had no idea of how funny that was to me. 

He did go to Paradigm this morning, rather happily, despite these proclamations during his What Words Will Work on Mom War:

“I’m only going because you want me to!”

“I’m only going because you’re making me!”

“I’m only going because I want pizza!”

 

And when we got to Paradigm, Aaron wanted me to come in and talk to Barb, which I did.  Aaron was a little huffy at first.  He wouldn’t hug Barb, but shook her hand very properly…..and I smiled.  Hopefully he’s been all right today.  Hopefully the war for him is over.  Hopefully his scattered pieces are back in the bin, neat and orderly, although he’ll always leave a few on the floor where he wants them. 

And we leave them there, because some battles in some wars just aren’t worth fighting.  It’s part of what makes Aaron unique, challenging, and full of his own way of living in his world.

It’s part of what makes us stay on our knees, trusting God for what we need to fight whatever war may come our way today.