Our Utopia

One recent night, after Aaron and I had watched an episode of The Waltons, I had a brilliant idea.  Now you must understand that after the program we are watching is over, Aaron wants the television off.  No watching ANYTHING else when our show is over.

Don’t ask me why.  Don’t ask me to explain many of Aaron’s quirks.  He has his own rules in his own way, and he expects us to abide by those rules.  If we don’t…well, it’s not utopia around here.

Back to my brilliant idea.  During our last visit to see our daughter and son-in-law, Andrea had shared a fun song with us.  She played it on YouTube, on their big screen TV, and I LOVED it.  The song is Sea Shanty Medley by Home Free. 

Fast forward to our house on this particular night as Aaron and I finished watching The Waltons.  I wisely decided that while Aaron cleaned up the multiple snacks he carries to the family room to tide him over during our show, and while I finished my before-bed chores, that I would turn to YouTube on our new big television and listen to Sea Shanty Medley.

So, I did just that. 

And Aaron became unglued. 

Watching something…ANYTHING…after our show is not allowed. 

“MOM!!!  Turn that OFF!!” he exclaimed.

And I…being the kind mother that I am…turned the volume up a tad.

Aaron also turned his volume up more than a tad.

So I…remember my kindness…played the song a second time.

Let’s just say that it was quite a relief when Aaron finally fell asleep later.

The next night, after watching the next Waltons episode, Aaron’s head jerked around to me as soon as the last Walton’s goodnight and musical note was over.  He was checking to see if I clicked on YouTube again.

“MOM!!” he loudly said, “don’t listen to that UTOPIA music like you did last night!!”

Oh my goodness, how he can make me want to laugh in the middle of my frustration!

I wanted to correct him.

“It’s YouTube, Aaron, NOT utopia!!  Believe me, this is not utopia around here!”

But I didn’t. 

However, his comment has made me think a lot about our version of utopia.

Utopia – defined as a place of ideal perfection especially in laws, government, and social conditions.

Aaron’s version of utopia centers around his desire to have his life ordered in those rather eccentric ways that matter to him.  We do it this way every time, people!  If we cooperate, then his life is a place of ideal perfection.  Never mind that ours is not.

But life doesn’t work that way and therefore Aaron’s utopia gets all jumbled up…as does ours.

Yet even more important is our attitude concerning this utopia idea.  Gary and I do get tired of Aaron’s ups and downs…of how verbal he can be when he is angry…of how tiring it can be to try to meet his utopia demands while keeping our own in mind. 

One evening, Gary and I were particularly spent.  We snuck out to our front porch and sat in our rocking chairs, breathing at last without Aaron’s interruptions.

But then this happened.

It was another moment when our attitude was tested.  And we have learned that it’s best to adapt to each of these moments with as much kindness and laughter as we possibly can.  Easier said than done some days.

Back to our utopia.  We have changed our own personal definition of utopia as we have parented Aaron over the years.  Our satisfaction and joy must be centered in trusting God.  In knowing that where He has placed us is where He will give us what we need. 

Let me share with you some beautiful pictures of our utopia.

The pure delight of bubbles:

The sweetness of sharing a beetle with Mollie next door:

The delight he finds in animals:

The fun he creates out of the mundane:

The happiness found in a simple game:

The rapture of all that cheese on his pizza:

Our attitude is of utmost importance.  Our attitude determines our joy.  We can always be looking at that other definition of utopia…an imaginary and remote place of perfection.

Or we can resolve to look at our utopia in the face of our special son.

Tough Trust

Yesterday as I ate my lunch, I saw a picture on my computer that started my mind turning toward some issues that make me sad.  As I wrote in my last blog (Listening Carefully), I know better than to let my thoughts stay on certain matters that will pull me down.  I am consciously practicing, more and more, immediately turning my heart to God and affirming to Him…and to me…that I trust Him totally.

As I sat at my table, thinking on these things and praying, these words came to me.  I shared them right away on Facebook.

It was around 1:30, and soon I was to go pick Aaron up at his day group.  He had a seizure early that morning, around 4:30, but felt fine and so was able to go on and spend the day with his friends. 

When we got home, as we talked about many things…because with Aaron there are always many things that he wants to talk about…I mentioned to him that I saw his empty deodorant in his bathroom trash can. 

“Yes!” he said, “I put some on this one but not on this one!”

I turned to see him holding up one arm at a time as he showed me which arm pit had gotten deodorant and which one had not.  😊

I left him in his bathroom to remedy the arm pit situation.  I had just sat at my desk in my bedroom nearby when I heard the awful crash and the sounds of a big seizure. 

I yelled for Gary and ran in the bathroom to see Aaron laying in the tub.  He had fallen backward into the tub, taking with him the shower curtain and rod.  He was entangled in all that, plus in his shirt that he had been removing.  The first thing to do was to hold his head to keep him from continually banging it on the hard tub as he seized.  Gary had run upstairs, grabbing one of Aaron’s small pillows to put under Aaron’s head. 

These sudden and very dangerous seizures are just awful on many levels.  It’s a terrible feeling to hear that crash and then the seizure sounds…to run to him not knowing what you will find…to wonder how hard he hit his head or if there are other injuries.

We had untangled him from the shower curtain and from his twisted shirt that was all around both his arms and hands.  Gary put a sweater over him and then we just had to let him lay there in the tub until he was awake enough to be moved to his bed. 

I went back to my desk, still shaken, and cried.  I cried out of fear, yes, but mostly I cried because it makes me so incredibly sad to see my son go through all these physical hurts. 

But as I sat there, God softly spoke into my hurting heart…and He reminded me of those words that He had given me two hours earlier.  God gave me words I needed before I knew just how much I would soon need them.

Yes, my heart is so tender when I think of Aaron and all the years of his physical suffering.  But God really does take that mama hurt I feel and uses it to show me how to toughly trust in Him.

I have to be tough for Aaron, and really, I can only do that because of my trust in God.  Sometimes that sort of trust doesn’t come naturally.  It would be more natural for me to be mad at God for letting this happen to Aaron, over and over and over. 

But I know my heavenly Father, and I know that He has reasons far beyond what I will ever know on this earth for why He lets Aaron suffer. 

It’s a tough place for me to be and it calls for a tough trust.  If my life was only smooth and simple, no tough trust would be needed.  But then I would not know God as deeply.  I would not experience His peace and comfort.  My faith would stay simple and small. 

A verse also came to my mind as I sat there thinking of all these matters.  I want to leave that verse with you…that simple but profound word from God. 

There it is again…trust.  Even when it’s tough.

ESPECIALLY when it’s tough.

Messy Grace

Last Friday when I went into Aaron’s room to wake him up and get him going for the day, I knew that something was off.  Sure enough, Aaron’s bed was soaked.  He had a seizure the day before, but I hadn’t heard one that previous night, so maybe he just drank too much water before bed.  Thoughts of that continuing issue with the amount of water he drinks made me a little irritated.

So did the fact that because of so many other things going on…and now tons of laundry to do…I had to cancel lunch plans with a friend I hadn’t seen in forever.  This was our second time to cancel.  GRRRR!

But I’ve learned to look at the positives at times like that.  I have a washer and dryer, and they work.  I have the time and freedom to change my day around.  And now Aaron’s bedding would be totally clean and fresh.  Every single bit of it…from the mattress pad up!  Oh, and I am ALWAYS very thankful for a super heavy duty and trustworthy waterproof mattress pad!  Am I ever!

The rest of our day went as planned.  I picked Aaron up from his day group, we went to Wal-Mart, got subs for supper, watched a qualifying run of NHRA racing, and had a nice time with all of it.

Later, not long before I was going to get Aaron from his room so we could watch a Walton’s episode, I heard a thump.  I was sure it was from his room.  I heard him walking so I knew it wasn’t him.  Soon he was in the family room, looking at me with some hesitation on his face.

“Mom?” he asked in a measured tone.  “Can you come to my room?  I need to show you something.”

I was comfortable on the couch.  It was nearing 8:30. I was winding down physically and mentally.  I was in no mood to go to his room and probably look at something on his computer that he just HAD to show me.

“Aaron, I don’t want to go up to your room right now.  Let’s just watch The Waltons,” I countered.

“No, Mom!” he insisted, “I need you to come up to my room now!”

Then I remembered the thump.

“Aaron,” I began with more calm than I felt.  “Did you break something?”

“Yes!!” he answered.  “It was my lava lamp!”

Now, you must understand that this was not just any lava lamp.  This was a GLITTER lava lamp. 

I was such a good mom at that moment.

“OH AARON!!!  YOU DIDN’T!!!!” I not-so-calmly replied.

I did not want to walk up those stairs.

I did not want to walk in his room.

I did not want to see what I soon saw.

There, on the floor beside his bed and under his bed was thick blue oozing goo. 

And not just any goo.

It was thick blue oozing GLITTERY goo!!

Let me tell you, I groaned and I huffed and I puffed and I complained the whole entire time I was cleaning up that awful mess. 

Poor Aaron wanted to help but there wasn’t much he could do.  I knew that there wasn’t room for both me and Gary to be in there working so I didn’t even tell him what was going on.  I just continued to bluster and blow as I sopped up the thick mess with a couple of old beach towels.  I even told Aaron to just throw them away.  I didn’t want eternal glitter in my washing machine!!

My washing machine, which had been running a good part of the day already as I cleaned up Aaron’s OTHER big mess!!

Oh, how my mind was working!  Poor me!!  My life is all about overseeing and cleaning up one thing after another!  Boo-hoo-hoo!! 

But I looked up from where I was kneeling on the floor trying to shine a flashlight under the bed so I could see sparkly goopy glitter hiding out…and there was Aaron sitting cross legged on the bed, telling me over and over that he was sorry.

Wanting more than anything to DO anything to help me.

My heart kinda broke for him and I felt such empathy for him.

That’s grace…not the kind that I can create, but the kind that God puts in my heart for this special son who can surely push my buttons but pull my heart strings at the same time. 

Later, after all the clean up and after the Walton’s was watched…as we got Aaron’s bedtime routine completed…a storm rolled in.  If there is one thing that Aaron absolutely loves, it’s a storm.

“Mom!!  Do you think I should keep my blinds open?”

I told him yes and to enjoy the lightning.  I was going to bed, finally, and that is all I wanted to do. 

But that’s not all that Aaron wanted me to do.

“MOM!  Come look at the lightning!  It’s BRIGHT!!”

Soooo, I stifled my huge sigh and walked once more into the room that twice already that day held so much frustration for me.

I stood at Aaron’s windows for a minute and soon there it was…FLASH!!  Bright lightning, followed by Aaron exclaiming, “Did you see that, Mom??!!”

I sat on the end of Aaron’s bed and immediately he threw back his covers.  In another flash, he was right beside me, and there we sat watching the impressive light show, brought to us by God.

And I was ever so thankful for God’s grace in that moment.  Grace from Him to me and Aaron in the form of such bright beauty out that window.

Grace to have my tired mind and body refreshed as I sat there enjoying all the sights and sounds of a good Kansas thunderstorm.

Grace to forget the messy day and to focus on happy Aaron.

Messy grace.

God extends that kind of grace to me every single day.

How can I not also extend it to Aaron in the midst of dirty bedding and glittery lava lamp mess?

Thank you for Your grace in all my messy places, God. 

And thank You for giving me the grace to show Your grace to Aaron.

However, I do not believe I will be buying another glitter lava lamp. 😁😁

Our Texas Trip – Part 1

I heard an old George Strait song yesterday that could have been Aaron’s theme song leading up to our trip to Texas.  The song is titled “I Hate Everything.”  And oh boy, did Aaron ever!

The night before we left saw us reeling under all Aaron’s verbal blows.  He was livid at having to go with us, far preferring that we hire a caregiver to watch him while Gary and I went alone.  We were definitely with him on that as the evening wore on and we were worn out. 

The next morning was no better.  Aaron didn’t like us, the trip, the car, the snacks we took, Texas, Andrea, Kyle, their dogs…nothing.  The only thing he liked was his idea of staying home and that was NOT going to happen, so we were stuck with lots of “not likes” and plenty of anger. 

“I hate this vacation!!” he declared as we drove down the interstate. 

Aaron does not enjoy leaving his room, his house, his routine, his bed…his normal.  These things are such a part of what makes Aaron function in his normal that the process of uprooting, even for just a week, is nearly more than he can bear. 

Aaron accepted his inevitable doom as we drove farther away from normal.  Gary and I left him to his games, his music, and his movies as we quietly recovered.  How draining it all was!  I texted and messaged friends and family to please pray.  What a comfort it was to know that we were being brought before the Lord!  I know that many of my fellow bloggers were also praying, and I thank you so much for that. 

We stopped a few hours down the road at our favorite Oklahoma City rest area.  And there Aaron found a cute little stuffed owl that we let him buy.  He rubbed his hands together in his happy way as we paid, and Gary and I felt like doing the same as we saw a lifting of Aaron’s anger.  A chocolate milkshake and onion rings from the nearby Sonic gave him further reason to smile. 

It’s a very long drive to Houston, and then even farther to Andrea and Kyle’s house in League City.  Aaron had lots of time to think about the upcoming week of change and uncertainty that he felt waited for him there.  We saw occasional outbursts from him about how he still didn’t like this vacation. 

Finally, there it was…the Houston skyline.

And not too long after, we were pulling into Kyle and Andrea’s driveway.  We could hear their 3 adorable dogs barking as we got out of the car.  Soon we were sharing hugs and doggie pats, settling our things in our rooms, and sitting down to the pizza that was waiting for us.

What a relief it was to see that Aaron was relaxed!  He had immediately given the dogs their treats and toys we had brought to them.  As we sat around the table, I was so touched to see the total attention that Kyle and Andrea paid to Aaron as he talked non-stop. 

That attention to whatever Aaron is saying is one of his major love languages.  The things he talks about can be mind-numbing to us but not to him.  Listening, commenting, answering his many questions…that means more to Aaron than we often stop to recognize.  But Kyle and Andrea know Aaron, and they love him, and they showed it by listening with great interest to his talk of…whatever it was he was saying.  😊

Later, as we were getting ready for bed, Aaron had me fill his water bottle that he keeps by his bed to drink while he reads a book before he goes to sleep.  Got that?  Because that little fact is very important.

I gave Aaron his pills while he was getting in bed.  Not having any other water, I told Aaron to just drink some of the water from that water bottle. 

“No!” Aaron told me.  “I can’t drink that water to take my pills.  That’s the water I drink while I’m reading in bed!”

I was so tired.  I sighed, and Aaron heard me.

“You don’t understand,” he said, with some anger returning.  “No one understands me!”

It was like some of that water splashed me in the face as I was hit with a fresh look into Aaron’s heart.  Try as we might, sometimes it truly is very hard to understand Aaron. 

Or maybe we understand on paper, when things are calm, but in the middle of the moment when we’re stressed it can be very hard to slow down, take a breath, step back, and see the world through Aaron’s eyes.  Feel it with his senses. 

This whole trip was like going to Mars for him in many ways. 

“Please, Mom,” it was like he was saying.  “Don’t also make me use my bedtime water bottle for taking my pills.  Don’t you understand?!”

My rising frustration was immediately replaced with empathy for this son of ours who didn’t ever ask to have autism.  But he does ask that we try to understand him as he lives with the rigidity that autism causes. 

Just understand.

Push aside my exhaustion, my frustration, my expectations – and simply give him a separate glass of water for pill taking.

What a gift that was to Aaron!

And to me as I once again saw him relax.  I knew that I, too, had spoken Aaron’s love language.

I have so much to tell you about our time in Texas.  It was the best trip ever for all of us!  I’ll share more later, hopefully soon, in my upcoming blogs.

Bless all of you for reading and for caring!  Good night and sweet dreams.

Smiles and Joy and Prayer

I ended my last blog by saying that we were taking Aaron to the zoo.  I wish you could have seen his excitement and joy at being there with me and Gary.  He has a way of jerking his leg when he’s excited, like a little kick, and he did that multiple times.  He laughed so loud that we had to tell him to tone it down several times.  But his joy gave us such joy, especially after the sadness of the day before. https://hesaidwhatks.blog/2021/04/27/the-autism-two-step/

This was my favorite picture of the day.  He and the gorilla had a moment, and how I wish I knew what that gorilla was thinking!

I sent the picture to our kids and told them that Aaron was the one in the white shirt.  Just kidding, just kidding!! 

Then Andrea said, “That gorilla looks a little miffed.”

“I think he’s been around Aaron,” I told her.  “I’ve seen that look on all our faces.” 😊 😊

On Wednesday, when I picked Aaron up from his day group, he came to the car carrying these.

His friend, Victoria, celebrated her birthday the day before when Aaron was at the zoo, so she saved some balloons for her buddy.  Now Gary has a balloon by his desk, and I have two in our bedroom.  Aaron does love to share.

Like today, after Meals on Wheels, he decided he would save this for Gary.

One French Fry. 

But that one French Fry was very important to Aaron, there among his chicken tenders he brought home.  He immediately gave it to Gary when we walked in the garage, to eat right away, want to or not! 

Aaron can bounce from one thing to another, and one mood to another.  Gary and I are along for the ride on most days.  I sure am thankful to know that God is our driver, though, in the long run. 

Aaron has an MRI of his brain in the morning, just to double check that nothing is going on.  It’s been a long time since he’s had one and his seizures have been a little weird lately, so it’s best to be safe.

I’m praying for no seizures tonight so we can go tomorrow.  Praying for good results.  I would really appreciate your prayers as well, for which I thank all of you VERY much! 

Like I said, how good it is to know that God is in the driver’s seat!

And Aaron is in the front seat, too, if he has his way because he is ALWAYS in the front seat and he must listen to his current music CD and if there is more than one of that group it must be played in the right yearly order and he must control when it comes on and when it goes off and keep track of which song is playing and what number it is and what the title is and……..

The Autism Two-Step

Gary and I are planning a trip to Houston next month.  We’ll stay with our daughter and son-in-law (Kyle and Andrea), and then get to see our other son (Andrew) who will be there for an NHRA race. 

Happy, happy fun times are ahead!  YAY, YAY!!

Wait.  I forgot to mention that we plan to take Aaron. 

Angry, angry times are ahead!  YUCK, YUCK!

That was Aaron speaking.

As many of you know, getting Aaron to travel happily is a stretch.  We want to include him for the obvious reasons, especially the fact that he IS family and should be a part of family times. 

We’ve been making the hard sell and thought we were well on our way to traveling success.  But yesterday morning…

Aaron stood behind me early as I sat at my quiet time desk. 

“I am NOT going to Andrea’s!!” he angrily spoke.

First words out of his mouth did not bode well.

None of my soft words softened him at all. 

I ended up on our patio, coffee in hand, where Aaron soon found me and exposited further on the reasons that he will NOT make this fun, fun trip.

I escaped in the house for a few minutes.  When I looked out at the patio, Aaron was gone.  I didn’t see him anywhere.  Where could he have gone?!

Soon I saw him, across the yard sitting all dejected on our bench.  Sorry for the grainy picture.

He soon moved to the front porch, sadness all over his posture and face. 

When he rejoined me on the patio, he was crying.  When Aaron cries, he is truly and deeply upset. 

“I don’t want to leave this house!” he exclaimed, as if we were forcing him out forever instead of just taking a trip.

But to Aaron, home and the familiarity it brings is of upmost importance to him.  It’s a huge stretch to ask him to go someplace else and just “be happy.”

Aaron reacts to all the stimulation outside of himself in a far greater way than you and I do.  A long trip, another house, an unfamiliar bed, more people around, a different bathroom…just everything about traveling is huge and very uncomfortable to him. 

And if Aaron is uncomfortable, then everyone within range of his voice will be most uncomfortable, too.

It’s so easy to say he should just go and have a good time.

SO, SO hard for Aaron to do that very thing, starting with the “just go.”

Later in the morning, like a light went on, Aaron calmed down and became happy.  It wasn’t because finally, he came to his senses!

It was because he remembered the Indonesian submarine that sank.  Really.  Not that the sinking and all the death makes him happy, but all the facts of that incident have filled his fact-loving cup to the brim.

He talked about the submarine incessantly on Sunday.  He talked about it until the moment he turned his light off that night and went to sleep.  So yesterday morning, when he paused from his travel grief long enough to think of something else, his mind went back to the submarine that had so consumed him yesterday.

Ahhhhh, a subject that pleased him, odd as that sounds! 

Autistic persons are often brought back to their comfort zones by slipping into whatever groove is safe to them and meets their unusual interests.  As strange as it seems to us, Aaron was able to lay aside his angst about our upcoming trip by finding that groove, which on this day was the sunken submarine…

And then Trandoshians…clones…launch codes…Republic Assault Ship…Wookies…

It’s just the most fascinating and often frustrating thing!

Yet Gary and I must lay aside our desire to lecture as we slip with Aaron into his groove, talk about the very unique subjects that permeate his mind, and be ready for the next onslaught of travel anger.

It’s a delicate dance that we know all too well, accompanied by the music of Aaron’s world.  The band isn’t always in tune, at least not to us, but Gary and I had best just dance along and let Aaron lead.

It’s the Texas Two-Step!  Except for us it’s two steps forward…on a good day…and at least one step back.  Often more.

Last night, as Aaron still processed all things travel related, his face lit up.

“MOM!!  Can Kyle tell me all about the submarine?  Because if he can then I’ll go to Houston!”

So Kyle, who has a degree in maritime studies but has never worked on a submarine, has been given an assignment for which to prep before we come.  And his dad, Kent…who served in the Navy on a sub…will no doubt be invaluable.  Andrea said we should just have Kent waiting in the driveway when we pull in.  😊  😊

It’s good that we can all laugh. 

All of us except Aaron, who takes every bit of this very seriously. 

Time for me to get our day going.  Gary and I are taking Aaron to the zoo, which is close and does not require travel but also does not…to my knowledge…have a submarine.  Too bad!

Looks like it will be a beautiful day for a dance. 

Just Being Here

I was having my quiet time this morning, and it was just that…nice and quiet.

I stepped out of the room for a few minutes and when I came back, this is what I saw.

“Aaron,” I asked, “what are you doing on the bed?”

“I’m just being right here,” he flatly answered.

I had to smile.  He certainly was just being right there.  He didn’t care one bit that he was messing up the bed that I try to keep all tidy and neat and unwrinkled.  He didn’t care one bit that he was interrupting my quiet time. 

Aaron is right here in our lives every day.  He is right here because God has placed him here. 

No matter where we go, with or without Aaron, he is right here in our lives and in our thoughts…in our planning…in our EVERYTHING.

Yesterday he was right here, in the Wal-Mart aisle as I turned the corner, happily oblivious to any thought that he was most unusual as he knelt on the floor to retrieve his favorite candy.

He was right here recently after a night of seizures, waiting for me to pray before he ate his fried eggs, and we watched an episode of The Waltons.

And more often than I enjoy, Aaron is also right here in his autistic frustrations that interrupt our life and often dictate our routines. 

Just like that crumpled bedding that once was smooth, Aaron can most definitely cause lots of wrinkles in what was at one point a smooth and happy day.

How I handle my emotions during those many moments is up to me, which is why I was SO excited to find this picture recently that I instantly knew MUST go above my quiet time desk.

Today I choose joy!

Not because I have some super perfect power to do so.

But because I know the One Who does have the power to give me joy.

Oh, trust me, I lose my temper and I get very frustrated and all the other “stuff” that comes with being human.

But Jesus is right beside me with His forgiveness and with His nudging toward joy.

How about you?  What is right here in your life that is hard?  Make a conscious effort to choose joy and just see what God will do for you.

“And do not be grieved, for the joy of the Lord is your strength.”

(Nehemiah 8:10)

Aaron’s Prayer

Last week Aaron was extra grouchy every morning when it came time to get out of bed.  Nothing I said or did made a difference.  Nothing Gary said or did made a difference, either.  So, it seemed we were stuck in perpetual morning grouchiness.

Believe me, Aaron can re-define what it means to display said grouchiness.  Can he ever! 

I have many AAAAAHHHHHH moments when he is on that level of refusal to get out of bed.  Aaron can be very verbal, and not in a nice way, when he is tired and sleepy at the beginning of his day.

Therefore, I sometimes tell him that I am done and then I disengage.  I don’t respond to his words or his demands, and I tell him that the decision about his day is his to make.  He eventually settles down and all is well.

Last Thursday, our Meals on Wheels delivery day, saw Aaron once again very angry about getting out of bed.  I quickly decided to get off that path, telling him that I would go without him and proceeding to get ready to leave.

Aaron could not bear that thought.  As we drove to the senior center a while later, Aaron’s mood improved.  His music made him happy as did the thought of eating lunch at a restaurant after our deliveries.

Aaron was very helpful and he enjoyed seeing our clients, as well as the various dogs and other animals that we have come to know. 

“Mom, did I do good today?” he asked as we finished at our last house.

I assured him that he did just fine, and he smiled happily as he rubbed his hands together.

Soon we were at Jose Pepper’s being pampered by Emily, our server that we have come to know.  She loves Aaron and is excellent with him.

We were munching on chips and salsa, along with a free espinaca, when Aaron’s salad arrived. 

“OK,” Aaron said, “let’s pray.”

I love it when the praying part is his suggestion.  I also love it when he agrees to ask the blessing, which he did on this day.

Now Aaron’s prayers are always two sentences, and they are always thanking God for things.  He might say, “Thank You for the food and thank You that we got to go to Meals on Wheels.”

But on this day, as we bowed our heads, Aaron got completely off script in a very wonderful way.

“Dear Lord,” he said, “next time on Thursday will You help me do better about going to Meals on Wheels?”

I seriously cannot remember Aaron praying like that in a very very long time.  Maybe ever. My heart was so touched and warmed by his simple yet heartfelt prayer.

Aaron does feel things much more deeply than we usually know.  It’s hard for him to process his feelings and thoughts in a controlled way when he’s frustrated.  Hard for him to let us know what it is he is feeling without hurting OUR feelings.

We enjoyed our lunch so much, even if Aaron wasn’t totally sure what he was eating.

“Mom?  What’s this green stuff?!” 

Being color blind makes Aaron’s life even MORE interesting…and ours as well. 

Green food and a great prayer. 

Thank you, Lord, for those blessings. 

Unto The Least

Aaron and I went bowling this past week with my dear friend, Joyce, and her sons.  Aaron and Johannes have bowled quite often together since Joyce and I started taking them last year. 

Johannes is non-verbal but look at how he speaks with joy all over his face when he watches his ball knock down some pins.

Last week Johannes’ brother, Christoph, was able to join us.  Christoph hadn’t bowled in quite some time. 

As I sat there watching Joyce work with Christoph before and during each of his turns, I was so touched by her kindness and her patience.

And in that bowling alley, I saw the hands of God.

Remember when Jesus told His followers that they had visited Him, clothed Him, fed Him…and they told Him that they had not done any of those things for Him?

But then Jesus told them that when they had fed and clothed and visited others, they had done it unto Him. 

“…as you did it unto one of the least of these my brothers, you did it to Me.”

Every parent caring for children is in many ways living out these verses. 

For those parents with special needs children who become special needs adults, the continual care doesn’t typically stop at a certain age.  The needs of our special sons and daughters are ever present…and often increase…with age.

We parents might often wish for more freedom to help in various ministries in our towns or around the world, but here we are at home still caring for the needs of our children after all these years.  Caregivers are nearly impossible to find or to afford.  It’s easy to feel stuck and rather useless as far as “serving the Lord.”

But in that bowling alley, God have me a powerful image of just the opposite.

In our own homes, every single day, we can live out God’s mission for our lives.

Every touch…

Every demonstration of love…

Every load of laundry…every cooked meal…every vacuumed floor…every cleaned-up mess…every repeated conversation, over and over and over!!….every doctor visit…every crisis…every decision…every tear shed…

We have done unto the least of these…the overlooked and sometimes forgotten ones…the marginal in many eyes…

And so we have done these actions unto God Himself. 

God has given us such a precious opportunity within the walls of our own homes!  An opportunity to serve Him every day without even walking out our doors.  It just doesn’t often FEEL that way to us.

I hope that all of you caregivers out there, in whatever capacity that may be…but especially in your own homes…will know that as you tend to your loved ones, you are also serving God in one of the most daily and difficult ways.

One day we will hear God’s words saying, “Well done, good and faithful servant!”

For Joyce, today, I say, “Well done, my friend!  Very well done.” 

But She Got Scared!

Every single day that Aaron goes to his day group, I tell him the same thing.

“Aaron,” I say with more patience than I feel, “do NOT give away any money today.”

You see, Aaron loves to give things away and one of the things he loves to give away the most is his money.  We send him with money to spend at Quik Trip for his lunch, but oh it’s so hard for Aaron to keep his money for himself. 

His philanthropy is well known among his day group friends, and there are some who are very willing recipients.

He has become quite adept at fudging his numbers, too, telling me that he bought this or that…or that the cashier didn’t give him back his change (yeah right!!)…or several other story lines that he has perfected. 

Sometimes between the Paradigm staff, especially Barb, and me and Aaron we’re somehow able to sort out the messes Aaron makes.  Often, it’s not without anger and tears from Aaron.  Occasionally Barb is able to get the money back from the person Aaron gave it to, but usually once the money is gone, it’s gone. 

Our rule now is that Aaron must bring a receipt home with him if he spends money anywhere.  He most often does this, and things are going better in the missing money department. 

Today as we drove away from Paradigm, Aaron realized that he had left his wallet there in Barb’s desk, even though she told him three times to take it with him.  Aaron told me he had only bought a slushie, so I was instantly suspicious about where the rest of his $7.00 was.

“MOM!!” he exclaimed, “I did NOT give any money away except for my change!”

“Aaron,” I reminded him, “you’re not supposed to give your change away either.”

I could feel my patience growing thin as we had the same money conversation yet again. 

Until Aaron said this: 

“But Mom, Victoria got scared because of the thunder so I gave her my change to help her feel better.”

Now what could I say to that?!

Barb confirmed the story as I asked her about the wallet.  She told me there was $5.00 in it, and that Aaron had given the change, all eighteen cents, to Victoria. 

Not long ago, after Aaron hadn’t been to Paradigm one day, Victoria saved him a piece of her birthday cake.  She gave it to him and they shared some saved cake the day that he returned…the day after he had a scary drop seizure. 

Barb told me today, as she has before, that their friendship is very sweet to watch. 

Life can be tough for Aaron sometimes, and I imagine that it can be the same for Victoria as well.  Things pile up in Aaron’s brain and it’s hard for him to process and handle his emotions correctly. 

But when I see Victoria saving some cake for Aaron, and I see the happiness on their faces…or I hear Aaron say that he wanted to help Victoria not be scared of the thunder…then my heart is full, and my emotions are hard to contain.

Our special children, though adults, still think and behave at times like children.  As caregivers, we parents can get tired of having perennial youngsters to teach and to take care of. 

But the other side of that coin is that we also get to see genuine simple acts of love like we saw today.

And those sweet moments are like a breath of heaven’s air to a tired mama’s heart.