Category: Special Needs Adults

Whose Sickness or Health?

Today is our anniversary!  Gary and I have been married 42 years.  I don’t even know how that’s possible, but somehow it is. 

There we stood in my beautiful home church in West Virginia, young and in love, pledging our vows to each other. 

Now we’re old, although I really don’t feel like it most days…and we’re still in love.  Our love is deeper and more settled than those early years, rooted in all the ups and downs of life that we have weathered together.

On my mind today are those familiar vows that are so often spoken at weddings.  We promised to stay true to each other “in sickness and in health.”

Never ever even once did I think of the sickness and health part as being anyone other than Gary or me.  Having a child with lifelong health issues was not anywhere on our radar when we spoke those words to each other and before God.

Today our plans were simple.  We would eat lunch out together while Aaron was at his day group.  Time alone while Aaron was happily occupied was a perfect plan.

Just before 8:00 this morning I heard Aaron having a seizure.  This is not unexpected.  I knew at that moment that our anniversary day plans would be changed. 

Later, when Aaron was awake and hungry, here was our view for a late breakfast on our patio.

And it’s OK, truly.  Gary and I are very used to these sorts of changed plans in our life.  And I am not trying in any way to garner sympathy. 

What has been on my mind this morning is that when Gary and I spoke those vows about sickness, we in reality were referring to our life with Aaron as much as anything – though we had no idea of our future.

Aaron’s life of special needs has been very trying at times.  Yet through it all, Gary has stood right by my side.  He has never wavered due to the stress of it all.  The demands of our many years in the military, his own career decisions, our moves, so many doctors, hospital stays…well, I could go on for a long time about how Aaron’s life has impacted Gary’s in particular.

But Gary never bailed on me or Aaron.  He has led and sacrificed and given of himself to both me and Aaron over and over and over.

So our vows, as I ponder them this morning, have taken on an even sweeter meaning to me. 

Staying true in our son’s sickness and health is indeed the greatest gift of love that I have been given by my husband…my husband of 42 years!! 

Happy Anniversary, Gary!   I love you so much. 

We’ll do a rain check on our lunch.  ♥️♥️

My Times, Your Hand

One evening last week, I looked outside and saw a beautiful red glow on the horizon.  However, my view was hindered by trees.  Knowing there was more to this scene than I could see from my vantage point, I quietly snuck out of the house…so I could drive alone without Aaron…and headed west to see what I would find. 

It was hard to keep my eyes on the road as I drove past trees and power poles.  The sky was so beautiful that I wanted to only gaze on it.  Finally, a few miles away, I found the spot I sought.  Flat…open…unimpeded by trees or poles – there it was.  The perfect view.

Oh my!!  What a stunning sunset it was!

I’ve looked at this picture a lot and done some thinking about the path of life upon which God has placed me.  How much do I trust God’s decisions about me and my life?

I don’t know about you, but I tend to feel more trust in God during the harder and often unexpected situations of life…those times when I’m suddenly the recipient of bad news and I’m thrown into God’s arms. 

But it’s the daily disappointments…that drip, drip, drip of stress…that can really bog me down.  The dailiness of life’s burdens can hinder my view of God’s path and His purposes for me much as the trees hampered by full view of this gorgeous sunset.

Saturday morning, for instance, Aaron stood by Gary’s desk chair. 

“Dad?” he said, “my mouth is broken.”

I smiled from the other room at Aaron’s phrasing – and I know that Gary was secretly doing the same.

Aaron thought he had burned his mouth, but in looking at it we both knew that these were not burns.  He had a rash.  The next day, Mother’s Day, I took Aaron to Med Express to have it checked.  It was quite painful, and he was having trouble eating.

Gary offered to take Aaron, bless him, but I wanted to do it since I always take Aaron to his doctor visits.  So, here I was, on Mother’s Day…at the doctor with Aaron.  It was a bit of a downer, honestly…not the way that I envisioned my Mother’s Day. 

See what I mean?  A small example of a small thing that can play upon my heart to bring discouragement, self-pity, and then lead to multiple other thoughts of how this and this and this did not turn out the way I wanted…

And my path’s view of God’s goodness is lost in the jumble of negative thoughts and emotions.

God gave me what I needed this morning, as He always does!

In Luke 13:31, the Pharisees reminded Jesus that Herod wanted to kill Him.  Jesus responded to them that He would continue the journey that God had for Him, and that when the time was right then He would perish. 

In other words, Jesus was declaring the truth of Psalm 31:15.  My times are in Your hand!  Jesus was standing in the unfailing sovereignty of God.

When David in Psalm 31 speaks of times, “…he doesn’t mean merely his life-span but all the kaleidoscope of circumstances that meet him left and right.”  (Dale Davis)

Oh, those multi-colored burdens that pile on day after day!  The unresolved issues and concerns that grow larger on a special day like Mother’s Day can cloud my view of God’s path for me. 

Last night, very uncharacteristically, Aaron suddenly said, “Mom, I’m glad you cared for me and took me to the doctor.”

I was pretty much stopped in my tracks by that!  And so overwhelmed with thankfulness that our “downer” doctor visit prompted in Aaron such a response.

Oh God, may I too look at You and be thankful for your care of me in the rough spots of life.  May I look fully at the path you have me upon and see the beauty amid the stresses.  May I not miss the opportunity to give You thanks for being for me all that I need, and not just giving me all that I want.

For it is in my need that I most fully see Your beauty on the road of life.

Thanks for Praying!

I knew that some of you who were praying about Aaron’s MRI last Friday might wonder if he was able to have it done.  Days are so busy and get away from me, but I wanted to give a quick update.

He had no seizures the night before the appointment, so he was able to go and complete the test.  All went well and I’m not expecting to get results until his next doctor visit. 

Thank you so much for praying! 

He even went to his day group after the MRI.  He had said he wanted to just come home so going to Paradigm made me happy.  It made him happy, too, to be with his friends.  Victoria had saved him a cupcake, which pleased him greatly. 

And that reminds me that I wanted to share this sweet picture that our friend Barb sent me of Aaron and Victoria.  Aaron was tying her shoe.  Isn’t that the sweetest?!

On Saturday, Aaron and I joined our good friends for a birthday lunch.  Rosa and Aaron used to be in Paradigm together and became special friends.  Every year Louise and I get together for Rosa’s birthday in the spring, and Aaron’s birthday in the fall.  We didn’t get to do it last year due to COVID.  They hadn’t seen each other since November of 2019!  It was so much fun to see them enjoying time together again!

And with Mother’s Day coming up, I’ll share a picture of Rosa and her mom, Louise.

And me with Aaron.

In case I’m not able to post again before Sunday, let me wish each of you dear moms a very wonderful and sweet Mother’s Day!

God bless each of you dear readers!

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.

Listen to The Music

The self-checkout at our nearby Dillon’s grocery store plays music when it’s time to take your receipt.  Only about four notes play over and over until you get your receipt.  It’s just another automated reminder and no big deal.

Unless you’re Aaron! 

Aaron is absolutely fascinated by the little electronic jingle.  Most of us would barely notice it or would brush it off as annoying. 

Again, not Aaron!

Every time Aaron and I go through the self-checkout line, he leans way over the scanner when he knows that I’m done.  He wants to clearly hear the music.

I took a picture of him a couple weeks ago as he listened to the notes.

There he was, a grown man with his long flowing sweater on, leaning way over the scanner. 

He did not care one bit about how he looked.

He did not care one bit about who thought what.

Here is something I have learned in our life with Aaron.  I have learned that it’s best if I also do not care one bit about how he looked.

And it’s best if I do not care one bit about who thought what.

Aaron doesn’t just march to the beat of a different drummer.  He marches to the beat of a whole different symphony!

He will stop to listen and observe and comment about things that most of us don’t even see.

He takes the time to listen to the music of life around him in ways that most people do not. 

So when he leaned over the scanner this last time, instead of being embarrassed and looking around to see who was staring at us, I just laughed and joined in the fun.  I didn’t grab my receipt right away so that the music would play a little longer and Aaron could totally enjoy it.

And you know what?

I totally enjoyed it, too. 

Looking at the world…and listening to the world…with Aaron, in his way, really is such beautiful music. 

At least it is most of the time.    😊  😊