Category: Caregiving

My Adornment

It was Christmas Eve morning, and I was preparing for a day full of cooking and family fun.  The day before, I had pulled off my plan for an “Aaron day” without a hitch.  I wanted him to have time doing what he loves before all the commotion of Christmas wreaked havoc with his routine and therefore with his behaviors.  Our son and his girlfriend, just in for the holiday, joined us at All Star Sports for some Aaron-style fun.  Afterwards, we ate at Old Chicago, a favorite of Aaron’s.  It was a great time!

But early the next morning I heard Aaron having a big seizure.  This was a bed wetting one.  So mixed in with my cooking and all the other Christmas prep, I found myself hauling loads of bedding to the laundry room.  My main emotion was sadness for Aaron that day as he had two more big seizures over the next several hours.  

Yet these moments also drive home to me the fact that caregiving is my life.  It’s a life I never envisioned for myself when I contemplated marriage and motherhood as a young starry-eyed woman.

Every mother lives a life of self-sacrifice in many ways but having a child with special needs of whatever kind increases that role in ways she never knew.  Any caregiving role is the same.

That is why I was so impacted by some verses I read one morning.  Paul was talking to Titus about practical ways that we as believers are to live out the gospel.  In chapter two of Titus, Paul gave instructions to older men and women as well as to the younger men.  

He ended that section by urging slaves to conduct their lives in a way that they would “…adorn the doctrine of God.”

In that culture, slaves were nothing.  They were the lowest of the low.  Yet Paul told Titus to encourage them to adorn the doctrine of God, the gospel.

This is a high calling for such a lowly people!

The word “adorn” carries the meaning of arranging jewels in a setting that displays their beauty.  

I love what John Stott said about these verses:  “…the gospel is a jewel, while a consistent Christian life is like the setting in which the gospel-jewel is displayed; it can add lustre to it.”  

Our human tendency is to equate importance with the “big things.”  Red carpets, book signings, conference speakers, a record contract.  

Not with wet bedding, doctor visits, behavior issues.  

Not with dementia, hospice, hospitals, infusions, cancer…

But the gospel shines brightest in the darkest places.  This is where God is especially honored and given great glory.

How?  By our faith being seen in our service to the ones we are caring for.  By yielding to God’s plan for our lives with trust and peace, even through tears or anger or resentment that inevitably comes at those vulnerable moments.  

It’s a matter of my heart, not my surroundings.  

“Slaves, in all things obey those who are your masters on earth, not with external service, as those who merely please men, but with sincerity of heart, fearing the Lord. WHATEVER YOU DO, DO YOUR WORK HEARTILY, AS FOR THE LORD RATHER THAN MEN.”   (Colossians 3:22-23)

Where do you find yourself today?  

Remember that the seemingly lowest place is the place of high calling in your life as a believer.  

Even if we feel like no one notices our service, God still urges us to shine with the beauty of the gospel.  God notices and that is all that really matters. 

 

Am I Ready?

It was November 7, 1984.  Gary and I lived in Colorado Springs.  I was one week into my 9th month of pregnancy with our first child.  Gary had just returned home from flying his Army Cobra helicopter.  I headed up our stairs when a pain hit me.  Gary saw me from our bedroom as he was changing out of his flight suit.

“Now?” he asked with surprise.  

I soon knew that, yes, the time was now.  We hurried to Fort Carson and just a few short hours later we welcomed Aaron into the world…into our world.  

I had been busy making all his nursery items.  The yellow and white gingham curtains, bumper pad, and changing table cover were waiting on Aaron.  But there were still things to do, like putting the crib together and finalizing all the other details of his cute yellow duck nursery.  We just weren’t all the way ready for Aaron to join us three weeks early!

In so many other ways over the 40 years of our life with Aaron, I have found myself still not ready.  Not ready for this journey of Epilepsy, Autism, and having our adult son still living with us.  Not ready for the hundreds of ways that our life is not at all what we thought it would be as we held our little 6 lb. 4 oz. squirming bundle in that old military hospital on Fort Carson.

In so many ways, Gary and I are set apart from our peers even at this stage of our lives.  We are not free to come and go as we might wish.  Aaron is entwined in every decision we make.  And when I meet someone new and we are getting acquainted, the usual response when I tell them that we still have our adult special needs son living with us is, “Oh.”  Most people don’t know what to do with that scenario and so they quickly move on to other topics. 

Aaron can be so funny.  He is just who he is, too, especially in public.  But even that can be a bit embarrassing to us as he does his Aaron things, oblivious to what others are thinking.  Like sitting in the grocery aisle to examine his latest food find.

Or sitting on the floor in every waiting room now so that he can work on his sticker book, even rearranging a chair or table if needed.

I have thought a lot about Mary especially now as we retell the Christmas story at this time of year.  When Gabriel told her that she would become pregnant and give birth to Jesus, God’s Son, she humbly said, “Behold, I am the servant of the Lord; let it be to me according to your word.”  

She must have experienced so much embarrassment as her condition became known.  Did anyone other than Joseph really believe her story?  The gossip, the looks, the questions…how she must have been set apart from everyone in that small town.  

Mary gave birth far from home, surrounded by animals in a dirty stable.  Not even her mother was there to help her.  I doubt that the scene was like the ideal pictures we see on our Christmas cards. 

Then the move to Egypt to escape Herod and coming back to their hometown of Nazareth a few years later where everyone knew Mary’s story of her past.  

Was Mary ready to be the mother of Jesus?  Ready for the turmoil that surrounded Jesus? Ready for the fear as she watched Him being hated and persecuted?  Ready for the extreme heartbreak as she watched him tortured and put to death?  

I doubt that she was.  But she had already made the most impactful decision of her life when she yielded to God’s will for her life.  

That same yielding to God is what brings me the deepest peace as well, even in the fear of Aaron’s seizures.

Peace, eventually, during the frustrations of his behaviors.

I know, and so can you, that “…the God of peace…even Jesus our Lord, will equip you in every good thing to do His will, working in us that which is pleasing in His sight, through Jesus Christ, to whom be the glory forever and ever.  Amen.”   (Hebrews 13:20-21)

We don’t know what it is that will please God in our lives.  

But we can be ready if we know and follow Him, trusting our loving God as we, like Mary, say, “May it be to me according to Your word.”

The best gift we can give Jesus is our heart and our will.

May each of you have a very blessed Christmas season as we celebrate the birth of such a Savior!  

No Water! No Deal!

Wednesday morning seemed just like any other morning until my husband stepped out onto our back patio and discovered water bubbling up into our back yard and between our bricks on the walkway.  Oh boy!

Gary was able to cut the water off at the meter and line up a plumbing company.  They came, did a lot of looking and some digging and some poking and some figuring.  Then we did some questioning and some signing and some down payment paying…only to be told that they couldn’t get to the job until the following Tuesday.  What?!  

That’s a LONG time without water!

So, we did some calling and some discussing and some cancelling and some finding of new plumbers.  

We also did some filling of large water containers that Gary wisely has had on hand for just such emergencies, turning on the water just long enough to get the job done.

The new plumbers came the next day and got right to work.  They worked late, digging and examining in a trench that starts in our back yard, wraps around the side of our house, and ends near the street in our front yard.

There were bumps along the way, like damaging a sewer line that thankfully was an easy repair but meant no flushing all day Friday.  TMI, I know, but I’m just being real.  And it was getting real bad!  

Location services had to come out more than once to correct mistakes they made in locating the cable and other lines.  That’s comforting, right?

The workers were so nice and a pleasure to have around.  They worked very late Friday night and were able to get our water back on!  You can guess the first thing I did.  Actually, it was the first three things I did…flush our three toilets!!  And clean like a mad woman!

The plumbers were coming back on Saturday to hopefully finish the job, but heavy rains during the night and all day Saturday put a stop to that.  Now the trench is full of water and the continuing rains leave us unsure of when the work will be completed.

But we have water!!  And more importantly, Kansas has gotten some MUCH needed rain.  We are not complaining!

As this all progressed, we were concerned about how Aaron would handle it.  Having no water is a huge deal, and huge deals are often a no-deal to Aaron.  He surprised us, though, with how well he did.  He was intrigued with the digging and getting to see the pipes under the ground.  The workers were so kind to him.  They got a kick out of his excitement.  The supervisor even saved the ruptured piece of pipe to show it to Aaron and explain what had happened.  

But by Friday morning Aaron was close to being done with all the no water business.  I knew we were near a boiling point with him when he told me that he was NOT letting me have any of his Halloween candy like he had promised the night before.  

And to finalize his decision, he added:  “I am NOT making a deal with you, MOM!!”

Imagine my surprise when later he walked in the room and laid this on the desk in front of me.  

He chuckled and rubbed his hands together.  

“We don’t need a deal,” he said.  

“You want me to have this?” I asked.

“Yes!” he answered.  “Eat it!” 

He understood when I told him I would wait…that candy first thing in the morning is too much for me.  

All this situation with having no water, though, has made me think about something that has been on my mind a lot since the horrible hurricane damage in the southeast.  I have thought and thought about the impact of such terrible personal destruction on those with special needs.  

How on earth are they surviving?

How are families handling the upheaval and its effects on their special family members whose whole world has been turned upside down, destroyed, and perhaps forever gone?

My friend in western North Carolina talked to me about her daughter who has autism, how she stepped up to the plate at the beginning and was so helpful at home and with neighbors.  But as time went on it was getting harder and harder to handle the constant pressure and stress of routines being completely disrupted and of doing things not normal for her.  Then come meltdowns and anger, which are terribly difficult for the family already dealing with more difficulties than imaginable.  

I have wondered what Aaron would be like in a situation like this, where everything he knows and expects and demands is gone.  I can’t even fathom it.  A couple days without water and he was approaching the done point.  Imagine everything being gone for weeks and weeks, forever even, and what that would do to him.

Imagine the untold number of families in these areas whose special children or other family members are enduring just that, a million times worse than our small inconvenience.  

So many special needs individuals with so many needs that are special to them.  Needs they can’t control but that must be met as much as possible.  

How they need our prayers!  

Let’s not forget them.  

Lean On Me, Aaron

Yesterday Aaron and I went to his annual PCSP meeting.  How many years have we had these meetings?  More than I can nearly remember.  

His case manager and I decided several years ago to hold our meeting at one of Aaron’s favorite restaurants, Carlos O’Kelly’s.  Aaron really doesn’t like meetings that discuss him unless we’re letting him do all the talking about really important stuff.  You know – matters like whether Pluto is a planet or not, what solar flares are, and are black holes really sucking in stars?!  But mulling over matters of his likes and dislikes, what he is or is not allowed to do at his day group, what his goals are, and so on and so forth…well, Aaron would rather leave the room and find someone who IS wanting to hear him talk about planets, flares, and black holes.  But put a plate of enchiladas, chips and salsa in front of him and he’ll endure our needless talk.

Aaron had gotten out of bed super early the past two mornings.  Space videos on YouTube were calling to him, I guess.  As we sat in our booth munching on chips and salsa, he started leaning and leaning until finally he was resting against me like a little child.  

I eased him over and he sat straight for a couple minutes, but then he began leaning into me again.  I knew that he was sleepy from his very early mornings and from his meds, but still I kept propping him up so he could eat and participate in the meeting if needed.

Later, as I drove us home, I looked over at him sleeping soundly in his seat.

  

He is sometimes showing that age is creeping up on him.  He even seems a little feeble at times, like he did as he leaned on me during lunch.  I know that seizures are taking a toll.  He has memory loss, tremors, drooling sometimes, and other effects of both seizures and medicines.  

My heart is stirred with so much love for him.  So much concern for his life now, and for what the future will hold for him.

Yet there are those other moments, too…more and more, it seems.  Moments when Aaron is frustrated when things are not going his way at his time.  He is becoming more impatient with waiting, more set in his routine, and more expressive when those frustrations mount.

Therefore, Gary and I are finding ourselves more stretched on some days.  Our own frustrations mount along with Aaron’s.  Stress seeps through every crack in our strong armor.

I look at Aaron leaning on me, and I know that he needs me when he is struggling, both physically and emotionally.  His reactions are often beyond his control.  Sometimes that fact is hard to remember.

So, who do I lean upon?  

God.

Yes, Gary and I support each other.  I have amazing friends who walk a similar journey to ours.  I have great family on both sides.

But it is God Who leans down to me as He did the other night and fills me with deep peace even as the storm swirls around me…Who understands my struggles…Who speaks comfort to me…Who assures me with these words:

“Trust in the Lord and do good; dwell in the land and cultivate (feed on) faithfulness.”   (Psalm 37:3)

I can feed on so many things like anger, comparisons to others, resentment…the list goes on.  

Or I can obey God and lean into Him.  He understands my need.  And I must understand my need to trust Him and do good.

To feed on faithfulness even when I just want to walk away.

Faithfulness to God, and faithfulness to our Aaron.

Knowing that this is also true:

“Commit your way to the Lord, trust also in Him and He will do it.”  (Psalm 37:5)

Commit.  Lay on God’s shoulders the heavy burden.  

He is strong enough for all my burdens and He is there for me to lean upon when I am tired and done.

And oh, I cannot express enough about the grace that God gives me to continue putting one foot in front of the other, day after day with Aaron.

It’s not one bit about how strong I am or that God gave Aaron to such an amazing parent.

But it IS all about how God meets me in my most down moments with His sweet peace and His words that speak such joy and comfort to me.

And as I learn to lean on God, I can be there for Aaron when he needs to lean on me. 

God holds me up so that I can do the same for Aaron.  

That’s even more amazing than all the black holes in the universe!

Good in My Nazareth?

Tis the season for the Christmas story to be at the forefront of people’s lives.  And in the forefront of that story is the little town of Nazareth.  Gabriel was sent there to tell Mary that she was the one whom God had called to bear and give birth to His Son, Jesus.  

Nazareth…a very small dusty town.  Pretty much a place one would pass by rather than linger there for any reason other than to perhaps get a drink of water.  Larger, more exciting towns were nearby.  

Years later, when Jesus was calling His disciples, Philip went to find Nathanael.  He told Nathanael that they had found the One foretold by Moses…Jesus, of Nazareth.

Nathanael’s response?

“Can any good thing come out of Nazareth?”

That seems to be the reputation of Nazareth in a nutshell.

But Mary lived there, and her betrothed, Joseph.  Two unknown people in an unknown town…a town nowhere mentioned in the Old Testament or early Jewish literature.  

But the angel said that Mary had found favor with God.

How?  How do you make a name for yourself in Nazareth, of all places?

But that’s just it.  Mary didn’t set about to be noticed by God.  She wasn’t trying to do great things.  She simply lived her life for the glory of God in every mundane daily task that was a natural part of living in Nazareth.

Less than an hour ago I stood by Aaron as he had his third seizure in four hours.  This one was very hard.  My heart hurts.

Afterward, I sat by our Christmas tree and pondered this life that God has given me.  In many ways, I can say that this is my Nazareth.

I have had a taste of the “other” side of life.  Awards, travel, lots of ministry, etc., etc.  

But as time has gone by, my world has narrowed a lot.  The life of a long-term caregiving parent is not exciting.  It is not a life that others point to as they wish they had MY life.  

And all of my fellow caregiving friends know “the look.”  It’s the look that crosses a person’s face when they ask what you do or if you can join in this or that, and you tell them your situation.  So often there is no real understanding.  Sympathy, perhaps.  Compassion, sometimes.

But it’s like they don’t know what to do with you.  

Kind of like being from Nazareth.

But God has a purpose for each of His children in His kingdom.  Even us Nazareth folk.

For God says that He works all things for good in the lives of His followers.  

I have good purpose, right here in my Nazareth.

For every piece of wet bedding washed, every meal cooked, every bathroom cleaned, every doctor appointment, favorite show watched and game played, every story listened to for the 500th time – is just what God has for me to do where He has put me.

He put Aaron with us.  I can look at my life with him as my ministry or as a misery.

Human nature makes us feel that we’re not really being of value unless our calendars are full of events and we are free to come and go as we choose our opportunities.  And this is wonderful for many people.

But for my other Nazareth people…whatever your Nazareth is…know that there ARE good things that come out of Nazareth.

Claim your purpose where God has placed you!

Be faithful there in the messy and the mundane.

In so doing, you are bringing delight to God…and there is no higher calling.

Even in Nazareth.

Do You Know Me?

One evening last week, Aaron had a money gift burning a hole in his pocket.  He knew exactly what he wanted, so off we went to Walmart to look at throw pillows.  He wanted one to rest his book on while reading at night.  Soon we were walking down the main aisle toward the check-out lanes, Aaron happily holding his very soft black pillow.  

Walking toward us was a cashier whose lane we have used several times when we have checked out.   While in her lane, Aaron, as usual, talks and talks to her while she scans our items.  He discusses with her what we have bought..what he likes that we have bought..does she like those too?…what he wanted but Mom wouldn’t let him get…would she want those?…why or why not?…and anything else that he can quickly grab out of thin air before it’s time for us to walk away.

Aaron spied her as she walked toward us.  She gave us a nice smile.  I said hello and smiled in return.  Then Aaron stopped beside her and stared.  She wasn’t quite sure what to do.

“Do you know me?” he asked her.  

“Well, I scan your items sometimes and I remember you,” she replied, relaxing some and smiling at Aaron.

“It’s almost my BIRTHDAY!!” he exclaimed.

She wished him a happy birthday as I took his arm to lead him on and thanked her.

Oh, Aaron.

So unabashedly himself.  

Of course she remembers you, I thought to myself.  LOTS of people remember you.

But then it hit me.  It’s one thing to remember Aaron.  It’s quite another thing to KNOW Aaron.

“Do you know me?” he asked.

Aaron wasn’t diagnosed with autism until he was 14 years old.  We remember many incidents during those years before his diagnosis.  We remember his behaviors and quirks increasing but everyone attributing it to his seizure meds or the effects of the seizures themselves.  It was an extremely stressful time.

His autism diagnosis answered so many questions for us.  Off we set on this journey of understanding autism as it related to Aaron.

More importantly, however, we began to really understand Aaron through the tangled web of autism.  

In other words, we were getting to know Aaron for the complex person that he is.  

To REALLY know him.

It’s fun to know the funny side of Aaron.

We smile at the quirky side of Aaron.

And to enjoy the things that Aaron enjoys.

All those traits, and many more, are easy to roll with and relish.

But…and there’s always a “but,” isn’t there?

But there is an equal part of Aaron that can be very stressful and upsetting.

Sometimes, the upsets are mild, like when he uses multiple utensils for every meal.  Or doesn’t even use all of them but he needs each of them for reasons that are very real to him.  

Or how he can’t have just one CD of a particular artist that he is listening to but must have all of them out of the cabinet at the same time, strewn around the van or hidden under his bed.

How his routine and schedule are so important to him, to the point that he has a very hard time yielding any of it to our schedule, or to understand interruptions.

How hard it is so many times to wait on us when we’re going somewhere.  His impatience turns to anger, which can spread quickly to us.  

And then he carries that anger on some days to his day group, where he takes it out on others and has a no good, very bad day.  Here he is on one such very bad day.

It’s heartbreaking to see his struggles.  

“Do you know me?” I imagine him saying to us or to those who work with him.

Knowing Aaron…really knowing Aaron…takes lots of time and experience.  Lots of hard knocks and long nights and balancing acts.

Many days it’s one step forward and two steps back.

“Do you know me?” he asks again.

Sometimes we answer yes through gritted teeth, through tears, or anger and harsh words.

And then guilt.

Guilt that even though we know Aaron, we don’t always remember how he will react to even the most mundane things…things like a facial expression, a tone of voice, or a hand movement that pushes him over the edge.

But there is another thing we know.  

We know that God designed Aaron to be truly unique.  

God gave Aaron to us to love and to care for.  

And God knows that we need His strength and wisdom every single day.

“Do you know me?” Aaron asks again.

“Yes, Aaron,” we reply.  “We know you, and we will always remember that we love you in all your variety.”

The Bitter Root

Several years ago, I had an experience with a small weed in one of my front yard flower beds. 

 I had become so busy with my other gardening that I had put off the task of pulling that little weed.  It didn’t seem like such a big deal. The outward growth, though, hid what was happening under the ground, out of sight.

 Here is what I wrote:

One hot day as I worked among my flowers, I looked down and saw that this little weed had grown significantly. Still, it wasn’t huge but it sure was larger than I had noticed before. Silly me, I thought. Why have I been waiting to pull this once-little weed? I just need to get rid of it now, I reasoned. I reached down and gave the weed a pull, and nothing happened. I pulled a bit harder, and still the weed didn’t budge. I gripped harder on the small growth, gave a firmer yank, and still it sat firm in its place in the dirt. This small, harmless weed was certainly being stubborn! It wasn’t letting go of its foothold very easily at all! I was so deceived by the small growth that I could see that I was in turn shocked by its apparently deep growth in the soil. I once again got a firmer hold, jiggled the weed back and forth, pulled with all my might and finally out came the root. What a surprise! The root was very long – much longer in proportion to the rest of the plant. While I had procrastinated about getting rid of the little weed or argued with myself about how harmless the little weed was, this small weed was growing a deep root system that could have damaged or killed my pretty Coreopsis. There was no excuse for my neglect – a wise gardener knows better.

Sometimes I let attitudes fester in my heart…attitudes that are, quite frankly, sin.  It’s easy to say, “Well, now, you have every right to feel that way.  Don’t be so hard on yourself.”

And every time I give myself that little pep talk, I am letting that root grow deeper and deeper in my life until it’s not so little anymore.

I have been keenly aware of this fact as Gary and I care for Aaron.  Usually after a stressful period, often involving Aaron’s anger, we find ourselves talking together as we try to understand him and handle his issues in the right way.  So often, solutions are hard to come by.  The effects of living long-term with him spill over into every area of our lives.  We go back 17 years to the time we were making decisions about his future.  

Did we make the right choices?  We were headed in one direction and the doors closed.  Or did they?  

I am constantly reminding myself that all those years ago we were seeking God’s will and we were desiring to walk in that path of God’s choosing for us and for Aaron.  I must consciously trust God today with our past decisions…decisions that touch us in ways today that we never dreamed.

The impact of having Aaron with us now affects our “golden years” in so many unforeseen ways.  We know that future decisions will be upon us some day, but there is a bigger issue for me right now.

That issue is bitterness.  How easy it is to find ourselves saying, “If it wasn’t for Aaron, we could do this or that, go here or there, etc., etc., etc.”  

And soon my eyes are on the hindrances of life with Aaron rather than the joy of being in God’s will…of doing His work within the walls of our home…of loving Aaron and caring for him.

We are physical creatures.  We get tired.  We get discouraged.  

And sadly, we compare ourselves to others in those vulnerable moments when we’re scrolling through social media or having conversations.

Before I know it, the bitter root is taking deeper root in my heart.  And while I understand that my feelings are normal, I also know that I cannot let myself perch there.  

I must not settle for a life of bitterness.

These verses spoke to me so deeply this morning:

“O Lord, lead me in Your righteousness because of my foes; make Your way straight before me.”   (Psalm 5:8)

My foes…my enemies…are those attitudes within me that contradict what God says is right.  A big one is this issue of bitterness over the result of God’s past leading.  

We trusted Him then to put us on the right path, and so we can trust Him now to provide all we need to face the results of walking on that path.

I need God’s leading and His righteousness to overcome that bitter root that seeks to take hold.  Here is the result of trusting Him:

“Let all who take refuge in You be glad; let them ever sing for joy; and may You shelter them, that those who love Your name may exult in You.”  (Psalm 5:11)

Paul told the believers in Ephesus that through the power of the Holy Spirit, they could be rooted and grounded in love.  

Not rooted in bitterness but rooted in love…the love of Christ seen in their lives.

I must stop and check where I am allowing my roots to grow.  We all do, right?  We have so many hurts in life…so many stresses that pile up around us.  

O Lord, lead me in Your righteousness.  Do not allow me to lead myself into bitterness.  

I love this old hymn.  The lyrics speak well to each of us, wherever we are in our life of following Christ.

He leadeth me, O blessed thought!
O words with heav’nly comfort fraught!
Whate’er I do, where’er I be
Still ’tis God’s hand that leadeth me. 

Refrain:
He leadeth me, He leadeth me,
By His own hand He leadeth me;
His faithful foll’wer I would be,
For by His hand He leadeth me. 

Sometimes ’mid scenes of deepest gloom,
Sometimes where Eden’s bowers bloom,
By waters still, o’er troubled sea,
Still ’tis His hand that leadeth me. 

Lord, I would place my hand in Thine,
Nor ever murmur nor repine;
Content, whatever lot I see,
Since ’tis my God that leadeth me. 

And when my task on earth is done,
When by Thy grace the vict’ry’s won,
E’en death’s cold wave I will not flee,
Since God through Jordan leadeth me. 

(Joseph H. Gilmore)

Act Happy, Mom!

Over the years of blogging about our life with Aaron, I have sought to inform and educate others about the complexities of autism.  There are so many parts and pieces to autism…so many ways that Aaron’s life, and therefore ours, is affected by how autism makes him function.

Oh, if you only knew how many times I have thought or even asked this question of Aaron:   “Can’t you just…….?”  

Fill in the blank.

I have even had that question asked of me concerning Aaron.

“Can’t you do something with Aaron?!”

Or this one:  “Have you thought about….?”

Or:  “Have you tried….?”

Now, I do not mind helpful advice or constructive criticism.  However, one must be careful to truly understand a condition before offering advice on handling that condition.

Even Gary and I, with our years of experience, can at times find ourselves floundering amid Aaron’s stubbornness about certain situations.  

Aaron is very wrapped up in his own comfort and routine, sometimes to the detriment of everyone around him.  Anger on his part can set in quickly when his perceived needs are not being met in the way that he wants them to be met.  

It’s narcissism at its finest…or not…but is born out of Aaron’s deep-seated requirements of life, not out of pure selfishness.  Some incidents seem incredibly selfish, though, and there are times to handle that situation.

Such was the case one evening not long ago.  I was preparing a meal for supper when Aaron came into the kitchen and asked what we were having.  The meal wasn’t one of his known favorites.  And he let it be known right away that he was having none of it.

I did not budge when he asked if he could have something else to eat.  I reminded him that I do not run a restaurant and that he could eat what we were eating.  I told him I knew he would like it if he just gave it a try.

He was most unhappy!  

After several trips into the kitchen, where he angrily informed me that he hated that food and would NOT eat it, I knew that nothing I said was going to turn him around.  In fact, any words from my mouth just added fuel to the flame.

This is when I have learned to shut down and no longer respond to anything Aaron says.  I do not talk to him or respond to him.

And he detests that.  It makes him very uncomfortable when Mom doesn’t talk to him, but the silence is the best way I have found to defuse him and to show him that I am done with this scene.

As supper was nearly ready, he began to follow me around, talking a lot and hoping for a response from me.  Finally, he asked a question that needed an answer, so I responded in a very flat voice.  Aaron knows that this voice of Mom’s is still an indication that he has crossed the line. 

“Mom!” he urgently said, “you should answer like you’re happy that I’m telling you!!”

I had to smile at that one and was glad that my back was to him.

But you see, Aaron is clueless about how his treatment of us affects us.  It’s good for him to see the effect in a tangible way, as in my silence and lack of enthusiasm.

He did eat a little dinner with us, and we were able to talk to him some about his attitude.

Then later, Gary and I slipped out to the porch for a little time together.  We both needed a breather.

But we weren’t stealthy enough, for Aaron heard us and soon darted out the door and made himself right at home with us.  There he sat, seemingly oblivious to what had happened earlier, all primed and ready for a long talk with his captive audience.

Of course, he didn’t talk about his earlier behaviors.  He didn’t talk about his feelings, and he most definitely did NOT talk about our feelings.

Aaron wanted to fill our ears with his latest discoveries from reading his book on UFOs.  He wanted to talk and talk and talk about Area 51, asking tons of questions and waiting for our answers.  

Ah, Aaron…slipping into his comfort zone and unaware of the fact that this is not our comfort zone at all.  

Such is the give and take of living with autism.  My silence had pushed Aaron out of his comfortable place.  Now his talk of aliens and UFOs and Area 51 showed us that Aaron was ready to get back to normal…his normal, that is.

And yet his normal has in a strange way become our normal, too.  We know that Aaron is happy again when his conversation turns in these strange ways.

I guess Gary and I have become a little strange ourselves sometimes.  

And strangely enough, we didn’t have to act happy.  

We truly were just as happy as little aliens in a UFO!

Complaining in the Rain

It’s been terribly dry here in Kansas for way too long.  The wells out in our “used-to-be-country” neighborhood are running very low.  Some have dried up.  Some of the ponds used for cattle are just puddles now.  And the wheat crop is predicted to be the poorest in 60 years.

Therefore, I was happy to hear a low rumble of thunder early this morning.  As I sat on our patio and finished my quiet time, the sky began to darken.  I was very thankful for the rain that began to fall.  It was a gift from God!

Aaron was out of bed not long after and he sat with me to enjoy the rain as well.  Soon we were both ready to head out the door for our Meals on Wheels delivery.  The once gentle rain was now a downpour.

“Well,” I told Aaron, “we really need this rain so I’m not going to complain about it.”

We picked up our meals, loading them into the van as the rain came down and our clothes began to get wet.  At our first house, I opened the side van door and bagged the food.  Rain was a cold presence on the back of my shirt as I tried to lean in the van.  Aaron had already run to the client’s door, so I juggled the bag of food and my large umbrella, getting even wetter.

We chatted a minute with our friend, Aaron crunched in the corner of the small porch under a tiny awning and me under the umbrella.  Rain washed over us again as we got in the van, feet now soaked from the standing water.

As we backed out of the driveway, I happily made a little rhyme.

“Oh, the rain is a pain but I’m not going to complain!” I sang to Aaron.

Amazingly, he tolerated my silliness and off we went to the next house.  More rain, this time with some mud from the unpaved road as well as huge drops of water landing on us under the very low hanging branches at her uncovered door…branches that caught my umbrella and made it useless.

“This is great!” I exclaimed as we handed her the food.  “We do need the rain!  See you next week!”

By the fifth house, the rain was coming down even harder.  We ran up the wheelchair ramp, where our client was already at her door.  She was taking the dog bones that Aaron handed her for her two dogs.  I handed her the rather soggy bag of food and asked her how she was doing.

“I’m doing just fine,” she said, her face glowing with peace as she sat there in her wheelchair.  

She looked then at Aaron.

“Thank you so much for the dog bones,” she told him.  “My dogs love you for that.”

Aaron beamed.  Then she handed him one of the bones so that he could give it to her rambunctious dog himself.   She smiled as much as Aaron as he so excitedly watched the dog eat his bone.  

“Thank you and God bless you,” she said as we turned to leave.  I noticed how pretty she looked…how content despite her situation.  

At the next house we got to see our friend who had a serious fall a couple months ago.  She has been in the hospital and in rehab, and today was the first time we have been able to see her since her accident.  

Her smile was huge as she greeted us.  I wanted to talk about how she is doing but she wanted to focus on Aaron, hearing all about his recent seizure fall.  I finally managed to ask about how she’s doing, and she too said that she was getting along fine as she downplayed all that she has been through.  She is a sweet believer, and her joy is evident.

My joy was getting harder to muster as we went once more out into the rain.

“Whew!” I said, “I’m getting tired of this rain.”

“But I’m glad we’re getting the rain,” I quickly added as I remembered my earlier determination to be thankful.

My heart felt that little pinch of the Holy Spirit reminding me of just how much this morning is a picture of my life.

Oh, it’s easy to be all spiritual and thankful while I’m sitting on the patio, protected from the rains of life.  I can be an observer and have all the answers with all the right verses and attitudes as long as I’m not actually getting wet.

But let me step out into the storm and see what happens.  Getting wet and cold and muddy can quickly begin to take a toll on my patio attitude.  Soon I’m not so thankful for the rain that I had earlier said I needed.

The splashing of life’s trials has a way of diminishing my once-strong faith.

I feel cold.  Tired. 

And the path can make my feet muddy.  

Misery sets in, no matter how much I said I needed this weather sent from God.

No matter how much I quote Romans 8:28.

And while I may not be actively shaking my fist at God, I find that the flame of faith and joy in my heart is flickering in the rain.

It’s difficult to stay strong and positive in the downpours, especially prolonged storms that have no foreseen solution or resolve.

Honestly, I have been struggling some with Aaron issues over the past few months. Feeling discouraged more than I should.

“Lord!  I know I said that I need whatever you send, and that I can trust you.  But I’m getting tired and wet and muddy and uncomfortable!”

Yet the Lord, in His patience, used my experience this morning to prod my heart.  

And He used the most surprising people to touch my soggy spirit…people who have every reason to be extremely tired of the rains in their lives.

“Rejoice in the Lord always; again I will say, rejoice! 

 Let your gentle spirit be known to all men.  The Lord is near.  

Be anxious for nothing, but in everything by prayer and supplication WITH THANKSGIVING let your requests be made known to God.

And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.”

Philippians 4:4-7

Love, With a Little Sad

Recently, Aaron has been listening to the Phantom of the Opera movie soundtrack.  He has seen the movie and heard the music before, especially listening to the CD over and over.  But time has gone by, and Aaron doesn’t remember what the story is about.

During lunch a couple days ago, as he asked questions and I told him the story, I realized once again the sadness wrapped up in the Phantom’s life.  I couldn’t hide it from Aaron if I was going to tell the story correctly.

“You know, Aaron,” I finally said, “it’s really in many ways a sad story.”

Aaron thought for a minute.

“You have to see it as love,” he said.  “Love with a little bit of sad.”

His comment blew me away.  I was legitimately speechless.

I’ve thought a lot about what Aaron said.  I realize that he, in those few words, so perfectly described our life with him.

This life of parenting a special needs child is not a cake walk.  Yet we know that what God has allowed in our life is for a reason…and God’s reasons are always good.  Maybe His reasoning doesn’t make sense all the time, but God is good in all that He does and allows.

Gary and I have choices to make every day as we parent Aaron.  Yet no matter what moments we face each day, we love Aaron fiercely.

What is our focus?  Is it love, or is it sad?

We can’t ignore the sad.  That would be denial.

We’re sad when Aaron has seizures.

Sad when sometimes those seizures cause serious injuries.

Sad when his seizure meds make him so sleepy and tired.

Sad when he must be poked with needles so often.

We’re sad when his behaviors break his own heart.

Sad that he still refuses to travel to meet his new nephew.

But wait.  I need to remember what Aaron said.

Love, with a little bit of sad.

We want our life to be lived with a major on love and a minor on sad.

Like the love we felt for him last night as we stood outside watching the beautiful lightning to the west, hearing the distant thunder along with Aaron’s deep happy chuckle.  

Seeing the love he has for animals of all sorts.

The way he takes huge delight in the unusual.

We love the joy he shows in sharing.

And the big smile he gives when I pick him up from his day group.

I love how he looked on the exam table at his last doctor’s visit, reading his UFO book that he couldn’t wait to show his doctor.

I love how he leans way over to listen to the music that comes out of the self-checkout register at Dillon’s, oblivious to all the stares.

I love his random love notes. 

 

And that he’s willing to take an occasional picture with Mom.

I love looking out the window and seeing this scene.

I love that behind every hard, frustrating, stressful, and sad moment…I can hold on to this fact – that God has given us our special Aaron to love and care for.

We have to see it as love…love with a little bit of sad.