Category: Special Needs Children

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.

Oddballs

I want to start this blog by sharing with you a picture I took recently. 

OK.  You might be wondering what on earth these little balls are and why they are worthy of a picture.

Let me begin to explain by showing you another picture.

Many of you might recognize that this second picture is a bowl of Good and Plenty candies.  Aaron loves Good and Plentys.  He always pours his treats into a bowl and eats them one by one, usually while he sits in his favorite chair as we watch a show at night.

One recent morning I walked through the family room and saw little balls on the shelf of the end table beside Aaron’s chair.  I knew right away what they were.  Those little balls in that first picture are Good and Plenty candies.

BUT those little round candies are not oblong shaped as good Good and Plenty candy should be.  Therefore, to Aaron, they are unacceptable. 

They are oddballs.

And oddball candy is not to be eaten, at least not by Aaron.

Same candy…different shape…not allowed.

I absolutely love seeing such tangible pictures of the fascinating way that Aaron’s mind works.  This is classic evidence of the structured world that Aaron desires. 

Classic autistic behavior.

Look how he even set the pink candy in its own place, not in the row with the white ones.  Again, order is important.

Aaron can usually control the structure in his world when it involves food, silverware, blankets on his bed, when to turn the television off at precisely the correct moment, watching the credits at the end of a show, and on and on.

Unfortunately, Aaron’s desire that his world be carefully monitored for his own personal satisfaction runs into a problem.  The problem is that living breathing people with feelings don’t always fit into Aaron’s normal.

In other words, people can be like those defective candies. 

Oddballs.

But Aaron cannot set human beings aside into neat little rows when they don’t fit into his definition of acceptable.

He also cannot always keep his thoughts and frustrations about oddballs to himself.

Like the day years ago that he and I were eating lunch with someone Aaron didn’t remember, but she knew Aaron and was so excited to see him.  So excited that she kept leaning toward him to talk very happily with her exuberant voice and with her eyes very big. 

He finally leaned toward her from across the booth, opened his eyes as wide as he could, and exclaimed, “DON’T DO THIS!!!”

Oh dear.  I was so embarrassed.  This person works with special needs, and she understood, though she was taken aback.  But I knew that Aaron was getting very uncomfortable, so it was like watching a train building up steam before a wreck.

Then there was the time that we went with Aaron to parent night at his school.  He was to introduce us to each of his teachers.  At the last classroom, while waiting in the hall, we wondered why Aaron was beyond excited for us to meet this teacher.  We soon found out why.  She had a very pronounced spiked hairstyle, which Aaron found to be extremely interesting…odd, you might say.

“MOM!!  DAD!!  This is ______.  She looks like a HEDGEHOG, doesn’t she?!”

Well, well.

Gary and I were humiliated (although Aaron had a point 😊).  We immediately corrected him, and the teacher was immediately angry with Aaron…and it was not the finest of our parenting moments.

We have our times here at home, too, when Aaron sees us for the oddballs we are to him and he lets us know it. 

When one of us is talking to Aaron about something more serious and we change the shape of our eyes: “DON’T SQUINT YOUR EYES!!”

When I was talking to him one day and made a stirring motion with my hand, which upset him.  I asked why.  “I just see things you do are weird.”

When I was singing funny and could tell he didn’t like it, so I told him I was just having some fun: “I don’t like your fun.”

When I sniff and he is afraid that I’m upset: “ARE YOU CRYING???”  He really can’t handle crying from other people, especially me.

There are many more examples that I could include, but you get the idea. 

And if you hang around Aaron long enough you have a very decent chance of becoming an oddball, too.

But don’t worry.  You will be in good company.

Aaron, after seeing a picture of Shakespeare: “Shakespeare didn’t dress perfectly.  He dressed weird!”

As for Einstein in another picture seen by Aaron: “He has WEIRD hair!”

Maybe being an oddball isn’t such a bad thing after all, right?

Photo Worthy

We just finished the Thanksgiving season with all the family gatherings, delicious food, and lots of photo opportunities.  Now the oranges and golds are being replaced by the reds and greens of Christmas.  More pictures to come, for sure!

Already our social media is brimming with the pictures that others are sharing of their Christmas decorations.  So much beauty and creativity!  I love doing that every year, sharing the warmth and glow of the season.

But the brightness all around us, even if we only see it in a photo, sure can make the other side of life seem even darker than usual.

Other’s picture-perfect moments, if compared to some of ours, seem off-the-chart wonderful…and ours.  Well, the line on our chart is going in the opposite direction.  Way down.

Several years ago, I saw this picture of Mary and Joseph after the birth of baby Jesus.  It’s probably the most accurate portrayal of the nativity that I have ever seen.

The call of God on their lives to be the earthly parents of Jesus came at a huge cost to them.  They knew that their reputations would forever be tarnished.  Gossip and judgmental stares would be their lot. 

But can you imagine the long trip to Bethlehem for the census?  The discomfort, hunger, dirt, and fear? 

Then the baby being born in an animal stable.  We don’t know for sure, but did they have help delivering baby Jesus?  How Mary must have wished for her mother to be beside her! 

Can you imagine how alone they must have felt?  No family that we know of to surround them with love and care.  No beautiful nursery ready for baby Jesus.  No comfort of a soft bed for Mary or Jesus.  No kitchen full of food, or a meal train at the ready.

Joseph and Mary submitted without reservation to God’s call on their lives.  That special call might seem sweet and incredible to us but to them I can pretty safely assume that on most days it was anything but that.

Over this past week, mixed in with all the beautiful pictures of family gatherings, I was receiving other pictures from our dear friends.

 Dan and Wendy have loved and cared for their Elijah (Speedy) for many years.  Speedy has an extremely severe form of Epilepsy.  He was hospitalized yet again during Thanksgiving, for six days.

Lots of tests.

Still, lots of unanswered questions.

Always, always there is so much love from these amazing parents for their Speedy.

But the pain…the grief…is so real. 

Raw…and deep.

Wendy and I talk a lot.  We speak the same language that comes from special needs parenting.  We can be real with each other.

We understand what Dale Davis was saying in his commentary on the book of Luke when he talked about the benediction in Hebrews 13:20-21…about the part that says may God “do in us what pleases Him.”

That part is scary because we don’t know what it is that will please God.

Can we be like Mary, though, and submit to God’s will for our lives?

“May it be done to me according to Your word,” Mary replied as she was called to be the mother of God’s Son.

“Submission is preferable to consolation, for consolation pleases us, but submission pleases God.”  (Thomas Hog, 1692)

Let that sink in.

There are so many times that I would far rather have the photo worthy moments of family and fun and excitement and adventure and beauty to be the posts of my life.

Not the incomplete family photos. 

Not the tiredness…anger…frustrations…comparisons…resentments that often accompany this special-needs life.

How about you?  What is it in your life that you feel isn’t photo worthy? 

What would you gladly trade in for a more beautiful shot?

Somehow, though, I know that God looks down on our broken and He sees the very people and things that bring Him the most glory and the most joy.

He sees way beyond this temporal into a plan for each life that goes far beyond what we will ever know on this old earth.

And that’s what is eternally photo worthy.

Aaron’s Tears

Let me say right from the beginning of this blog post that I am sorry for writing another sad Aaron story.  As if The Flip Side – my previous blog – wasn’t enough, here I go again.  But I promise to have happy stories and huge Aaron smiles coming up.  After all, Halloween is right around the corner and Aaron is nothing short of over-the-moon excited about all things Halloween and pumpkins and…for the first time ever (really!)…a costume that he cannot WAIT to wear!!

In my last blog I tried to explain the impact that Aaron’s obsessions have on his everyday life.  In true autistic fashion, he will become hyper-focused on something that soon controls his decisions and his emotions. 

Water, as in the drinking of water, is another of Aaron’s obsessions.  Years ago, our daughter told him that there was such a thing as drinking too much water.  She was right.  In 2015, Aaron ended up in the hospital.  He was incoherent and unable to walk.  His sodium was dangerously low.

Over the years we have attempted to control his water urges but it’s very difficult to do so with a grown man who is able to get his own water…and is very sneaky about hiding water bottles, especially at bedtime. 

Three weeks ago, after routine bloodwork, I got a call from his doctor informing us that Aaron’s sodium was low again.  Aaron did a great job of reducing his fluid intake and in only one week his levels were normal again.  We praised Aaron for the good work, and he was quite thrilled.

But water obsessions are like an addiction.  The urges for lots of water returned, along with our removing bottles from his room and threatening to lock the garage refrigerator with all the water bottles inside.  Gary and I hadn’t figured out what to do about the faucets or the fridge water dispenser.  Ugh!!

Aaron has been doing better the past few days, though, and so we can only hope that he is learning to control himself.  But this past Monday at his day group was rough.

Aaron got some coffee at QuikTrip, and it accidentally was kicked over by a friend.  It spilled all over the floor.  He had taken water with him that day, but decided he wanted a bottle of water that was inadvertently offered to him.  A staff reminded him that he couldn’t have more water.  All of this was just too much, and the tears came.

He was totally dejected.  A staff took this picture of him in her office.

At first I smiled, but then I zoomed in, and the look on his face…

Well, it broke my heart.  And then I was crying.

If there was ever a picture of Aaron’s deep frustrations, this is it.

But why do I share this? 

Because I want others to know that these fixations of Aaron’s…and of so many others with autism or other issues…are life changing for them and are not to be flippantly brushed aside with a, “Oh, just get over it, Aaron.”

He can’t “just get over it.”

He is so deeply affected by his own fixations.

My blogging friend, Nancy, commented on The Flip Side that I wrote last week. 

“Dear Aaron,” she wrote, “it must be SO frustrating to deal with uncontrollable urges.”

Her comment touched me so much because she acknowledged that Aaron’s urges…his obsessions…are truly uncontrollable.  And she expressed empathy for that side of Aaron because of how deeply impacting it is in his life. 

How frustrating it is for him.

And I know that if I can look at Aaron through eyes of understanding and compassion, then hopefully he will see and feel the fact that he is understood and loved. 

Easy?  No.  Especially in the heat of the moment, or late at night when I am carrying three water bottles out of his room while he loudly protests.

Yet again, though, Aaron has shown me how much I am this way with my heavenly Father.  How I let my obsessions for things that aren’t good for me control my thoughts and my actions.

The mercy and grace that God gives to me is exactly what I need to show to Aaron. 

I goof up and God is there to forgive and to instruct, and to patiently love me through the repercussions of my repeated actions.

 I must do the same for Aaron…forgiving and instructing and most importantly, loving him through the repercussions he might face.

And maybe look into a water sniffing dog, as well?  😊

The Flip Side

I’m old enough to remember 45 rpm records.  On one side there was the recording of a major hit, usually a #1 song.  But then there was the flip side.  The song on that side wasn’t known well or at all, usually, and wasn’t talked about nearly as much as the other popular song.  Everyone wanted to listen to and talk about the fun, well-known song.

I started writing about Aaron and our life with him over 10 years ago.  My desire was, and still is, to show the amazing way that Aaron thinks and especially speaks.  I wanted others to see the absolutely unique and often hilarious way that Aaron expresses himself in order to gain an appreciation for all those with autism.  I love sharing our life with Aaron, especially the laughter and the wonder that he brings to us.

Yet there is a flip side, just like those 45 rpm records.  I have written about it many times over the years but don’t want to focus on the negative.  Just like the popular #1 song, it’s fun to hear the funny side of our life.  But that flip side is just as much a part of Aaron as the other preferred side.

Yesterday morning the song on the flip side was playing loud and clear at our house.  I didn’t turn Aaron’s record over.  Believe me, I far prefer that first side!  But turn over it did! 

For some background, most autistic persons have obsessions that they have a hard time…or totally cannot…control.  Some obsessions seem to be permanent, and others might come and go. 

One cannot tell an autistic OCD person to “just get over it” when he is obsessing over his obsession.  I may as well tell one of Aaron’s friends in a wheelchair to just climb up our stairs.  It’s not going to happen.  And neither will Aaron “just get over” the angst that he experiences when one of his obsessions becomes disrupted.

During the past two years, a staff member at Aaron’s day group has taken him to Quik Trip to buy whatever he wants to eat.  It has become THE highlight of Aaron’s day.  He is completely fixated on this fun, simple outing.  Often some of his friends go as well, which makes it even more fun for Aaron.

So, there is the obsession.

Now for the disruption.  A meeting. 

Meetings to discuss Aaron’s services, plans, health, etc., are a necessary part of every year. 

Aaron hates meetings.

The only meeting he likes is the one with his case manager because we gather at Carlos O’Kelly’s for lunch.  Aaron cares not about one word that is said at the meeting.  He is too busy eating yummy food and trying to monopolize the conversation. 

I had told Aaron that we were having a zoom conference on Wednesday morning at his day group.  I told him it wouldn’t last long and that he wouldn’t even need to be present for the entire call.

But on that morning, nothing mattered but Quik Trip.  He was super angry before he even got out of bed.  Nothing I said helped him.  He was sure that QT was out of the question…sure that this dumb meeting was going to keep him from QT…positive that his day was completely ruined with no QT…very angry that he had promised Myra she could go to QT but now it wouldn’t happen…what would Antoine think about not taking Aaron to QT…

On and on and on he went, accelerating into yelling.  He broke his closet door.  He hated this meeting.  He hated me. 

Then he cried.  If Aaron cries, he is genuinely and deeply upset.

I texted Barb at Paradigm, who can calm Aaron like no other.  She facetimed with Aaron, and he started settling.

As I fixed my hair a short time later, Aaron walked in the bathroom, fresh tears in his eyes.  In a voice thick with emotion and with total sincerity, he said, “Mom, I’m sorry.”

Then tears filled my own eyes.  I was spent but I was so touched at his apology, especially since I had not asked for one. 

I gave him a hug, which he allowed to last for maybe three seconds before he squirmed out of it.  😊

So why am I telling you all this? 

It’s not because I like talking about Aaron’s flip side.  But this is our reality, especially Aaron’s reality. 

And the reality for so many other families that I know. 

Seizures are hard.  Other health issues are hard.

But behaviors…they are in many ways the hardest.  What a toll they take on the Aaron’s of the world, and on the families who care for them and love them.

And on the staff at all the places that also care for our special ones.  Imagine having dozens of persons together, many of whom have these OCD issues and meltdowns.  I saw one yesterday when I was at Aaron’s day group, and I saw the response of the staff.  Being spit on and kicked is not pleasant yet these amazing people stay the course.

Seizures cause brain damage that worsen the situation.  Seizure meds compound the problems with side effects that include worsening behaviors. 

How complex these things are!

How life-altering for the families!

How we love Aaron! 

We hurt when he hurts.  We struggle when he struggles.  We mess up and need to ask his forgiveness, as well. 

We all need grace, God’s and each other’s.

I have to fill out this behavior chart about the whole hard ordeal.  Stats and records must be kept.

What can’t be measured in any metric or logged on any chart is the love we have for Aaron and that he has for us when the dust has settled and the tears are gone.

I wish I could check a box that explained his sadness at his own behavior.  One that would record his heartfelt apology, the tears in his eyes…in my eyes…and the lasting impact that yet another hard moment has left with us.

I’m thankful that God knows and that He gives His grace for each day.

And thankful for our complex and amazing Aaron…both sides.

The Normal Road

As I drove Aaron to his day group one day this week, we passed a big traffic accident in the other lanes of the highway we routinely travel.  We took our normal exit, only to discover that the exit we usually take when getting back on the highway was closed due to the accident.  I told Aaron that I would need to go another way home after I dropped him off.  This concerned him but I assured him that it was no big deal.

All was clear on the highway and the exits when I picked Aaron up later that afternoon.

“Mom?” he immediately asked when he got in the van, “can we go up the road we’re normal with?”

It took me a second, but then I understood what he meant.  He was very happy as I turned into our exit that we could go up the road that we are normal with.

Aaron was completely unaware that he had just perfectly described his life with autism.  And he had especially given the perfect picture of why our recent trip to Texas was full of our usual Aaron ups and downs.

Aaron wants to stay on the road that he is normal with.  Any variation of that road will most certainly be full of potholes and unexpected detours. 

The road that Aaron is normal with is only at home.  It is only his room…his bed…his computer…his games…his food…his bathroom…his day group…his routine.

His desire for his normal is why he wants to take as much of his normal with him as possible when he travels with us.  He takes more books than he will read in three years.  More music than he will listen to in the week that we are gone.  Way more food than he will eat and way more games than he will play.

And he takes way more out of all of us than we feel that we can give.

Patience and understanding are our goal on every trip, but they are often stretched very thin.  If only my scales would show how thinly I am stretched!  😊

One evening we were setting the table for supper at our daughter’s house.  I gave Aaron one fork just like all of us were using.  But look at his place at the table after he ran back to the kitchen and corrected my silly mistake.

Always, always, Aaron will take two forks and two spoons and two knives.  He doesn’t use them but what we need to understand is that for some reason he does NEED them. 

Again, here is a perfect description of living with autism – this time in picture form.

You can see Andrea’s one fork beside Aaron’s multiple pieces of silverware. 

Aaron needs more.  He can’t even tell you why he does but he indeed must have more.

He must have more than the rest of us in so many areas of his life.  Sometimes it’s hard to remember that.  It’s hard to be patient with him and understanding of a need that we don’t have.  A need that seems so unreasonable. 

But the complexities of autism are not to be trifled with. 

There are many ways that we as parents can guide and train Aaron, and we have.

But we must be wise in choosing our battles.  Some battles we will always lose, and such a loss is not worth it.

The road that Aaron is normal with is also a road that Gary and I travel right alongside him.

I guess you could say that over the years we have a new normal…one we could never have dreamed of having.

Some days the trip is long, and we feel near empty.

Then we see a view like this, and our hearts are full again.

Planted For Purpose

I visited a local nursery a few months ago to buy vegetable plants for our garden.  I took Aaron with me, hoping that he would enjoy seeing the various goodies that we were going to plant in our garden.  But Aaron had eyes for one thing only – sunflowers!

“MOM!!” he exclaimed as I stood at the counter to pay, “can I get some sunflowers?” 

I turned to see him with the packet of sunflower seeds already in hand, so I agreed.  He watched carefully as the cashier scanned the small package, all the while talking excitedly to her about how we were going to grow SUNFLOWERS!!

We decided to plant the little seeds between our house and our neighbor’s house, near her raised garden beds.  This way, their children could also enjoy the sunflowers.  Amanda loved the idea, so one afternoon Gary dug the holes…I handed three seeds to Aaron to plant in each hole…and Aaron bent over to place them in the ground.  We covered them up and went about our day.

Aaron wanted those sunflowers to be growing the next day but growing takes time.  Growing takes lots of patience.  One day, though, we saw the tiny shoots emerging from the ground!  Aaron was SO excited!  Over the next weeks we watched each little bitty plant become more and more established.  They grew!

But not into the huge sunflowers that we have had in the past.  These seem to be smaller sunflowers, or maybe they are responding to the harsh heat and the dry weather we have had.

Then one day, Amanda texted me with some exciting news.  We had a bloom!  Later, Aaron and I walked out to the row of sunflowers and sure enough, there was one bloom.

I noticed something that day.  The pretty sunflower that had been the first to bloom was the smallest of the others in that row.  Its flower wasn’t large and impressive like ones you typically see in Kansas fields. 

Yet the happiness that our little blooming sunflower gave all of us was huge!

Sometimes I feel like my life is that of the small sunflower.  Others are living more impressive lives similar to the taller sunflowers that stood on each side of our shorter plant…lives, quite honestly, that I thought I might have.

But God has taken that measly sunflower that bloomed first and has used it to reinforce a lesson I know well in my head but don’t often practice in my heart.

Yesterday God gave me a verse that says it perfectly, as only God can:

        “The Lord has made everything for its own purpose…” (Proverbs 16:4)

God has planted me where I am for a purpose.

And more importantly, God has planted Aaron in my life for a purpose as well. 

If I believe in God’s sovereignty…and I do…then I must also believe that every area of my life is sovereignly planned with purpose by Him.

My idea of great purpose is usually not God’s idea.

Yet God’s idea is always best and right.  Not always easy or even fulfilling on many days…but always best.

I can live a life that shines for God as I care for Aaron, or I can live a stunted life of anger and questions and comparisons to others.

I can see Aaron as a weight that keeps me down, or I can see Aaron as a means of experiencing God’s joy.

I can bloom or I can wither.

And here’s the catch.  Often no one…NO one…sees my bloom.  I feel like my life has no purpose.

But God clearly says that He has made everything for its own purpose.

I am to bloom brightly for Him, not so that my bloom will necessarily be seen and admired by others but so that I will grow in grace and be more like Christ.

So, little sunflower, I am thankful that you were planted where you were.  I’m thankful for yet another lesson that God planted in my heart using the least of these.

May I live a faithful life no matter how small I think it might be.

Feeding on Faithfulness

One of Aaron’s favorite things to do in all the world is to eat out at a restaurant.  The promise of eating out makes every doctor visit or dental procedure totally worth his time. 

Aaron might vary a little in what he will eat at the different restaurants that we visit, but always…if possible…he will order a side salad with “no croutons and two ranches.” 

And often he will order another of his favorites…French fries!

Not long ago, while he munched on his fries at lunch, he had an idea.

“Mom?” he asked, “can we make French fries?”

“I kind of made them last night in the air fryer,” I answered as I reminded him of the potato wedges that we had eaten.

“I didn’t see them that way,” he responded.

I smiled at Aaron’s response. 

He has, yet again, given me something to ponder.

A couple blogging friends mentioned Psalm 37 last week.  I decided to read slowly through that wonderful Psalm in the mornings after my regular Bible study.

Verse 3 jumped out at me.

“Trust in the Lord and do good; dwell in the land and cultivate faithfulness.”

Guess what the word ‘cultivate’ means?  It means to ‘feed on.’

Dwell in the land and feed on faithfulness.

‘Dwell’ can also mean ‘rest.’

The land is wherever God has put me. 

So, I am to rest where God has put me and feed on faithfulness.

That sounds pleasant at first glance.  But what if the place God has put me is less than ideal? 

What if it’s just downright hard?

Fact is, God didn’t say that I am to be faithful when my pasture is lush and green…when my place in life is fun and easy and fulfilling.

He just said to dwell there in the pasture where He has placed me…stay…rest.

And while there, feed on faithfulness.

Here I am, approaching the age that I used to think was REALLY old, and I am still in a large sense raising a child.  This time of my life was what I used to hear being referred to as having the time of my life. 

Empty nest and all that.

Hasn’t quite worked out that way for us.

But I can’t deny the fact that God didn’t qualify the type of land He would ordain for me.  He just told me to rest there.

And to feed on faithfulness.

You see, we can all be faithful where we are.  The form it takes is what sometimes trips us up.

Caring for Aaron, in all the shapes that caring takes, is me feeding on faithfulness.

But many times, I’m like Aaron as he compared the air fryer potato wedges to French fries.

I don’t see it that way.

I don’t see managing Aaron’s medicines, doctor visits, tons of paperwork, or driving him everywhere as having a lot to do with my faithfulness to God.

I most definitely get tangled up in tiredness and complaining as I work to keep him fed, active, happy, encouraged, and clean.

Sadness at seizures and frustration during behaviors jerk my emotions in all directions.

And as the days turn into weeks and the weeks into months and the months into years, it sure is easy to lose the sense of living in faithfulness to God.

Seems like I often compare my grass to others, and usually theirs is so much greener than mine.

Their feeding on faithfulness seems exciting and fun.

Mine?  Pretty dull and daily.

And often dirty. 

But something I’m learning…ever so slowly…is to look up to God when I feel like looking over to someone else’s land.  Keep my focus on my Shepherd and on the land He has given to me.

To see every tiring moment as an opportunity to trust Him, to do good, to rest in this place, and to feed on faithfulness.

To remind myself, at the end of another tiring day, that God smiles on my faithfulness. 

“I didn’t see it that way, God,” I often think.

“Oh, but I did, my dear,” God whispers. 

And I rest.

Remind Me That I Love You

Mornings for Aaron are definitely the time of day that he struggles the most.  It can really be hard for him to get out of his warm bed and face the day.  Not every morning is difficult, but let’s just say that for Aaron the majority of mornings do not have a right side of the bed.  Both sides are wrong!

Aaron realizes this about himself.  Therefore, sometimes he will tell me to give him a morning reminder that will hopefully help him to be cheerful.  The reminders are about something that the day will hold…something that he is looking forward to and so will encourage him to get up happily. 

For instance, he loves going to Meals on Wheels on Thursday mornings but sometimes he knows on Wednesday night that he may be grouchy the next day.

“Mom,” he says, “tomorrow morning if I don’t want to get out of bed just say Buster.’’

Buster is the little dog at one of our homes that Aaron loves to see and to pet.  And Buster loves seeing Aaron. 

Or on Valentine’s Day, when we were going to pick up roses to take to his day group friends, he knew the night before that he might be irritated about getting up.

“Mom,” he told me, “if I start getting mad in the morning just say roses.”

I love Aaron’s plan of action.  I know he truly does want to be nice in the mornings.  Sometimes his plan works, and well, other times it doesn’t.

One recent evening we were watching a favorite show.  Aaron was all comfy and relaxed on the couch, legs covered in his ever-present blanket, and enjoying a yummy snack.  He was the picture of contentment.

Such was not the case hours earlier as we worked to get Aaron out of bed and on his way for the day.  That morning he was the picture of frustration and anger.

As we sat on the couch enjoying our program, Aaron was filled with happiness.  He finally looked over at me.

“I love you, Mom,” he said.

The moment was genuine and so sweet.

“I love you too, Aaron,” I replied. 

Then he seemed to remember our unhappy morning.

“Tell me I said that in the morning when you’re getting me up,” he added.

His words were a stop-me-in-my-tracks moment.

How many times in my life have I been filled with contentment as things are going well?  Then it’s easy to tell God that I love Him.  And I mean it when I say those words to Him. 

But sometimes the bottom falls out. 

Gary and I had been married for five years before Aaron was born.  That positive pregnancy test was SO huge to us!  How thankful we were!  How full of love for God and His sweet blessing in our lives!

Now here we are, 37 years later, in a place we never dreamed we would be with Aaron. 

Seizures.  Autism.  Behaviors. 

Can I still lift my eyes to God and tell Him that I love Him?

Those warm fuzzy ecstatic moments of my first pregnancy are long gone. 

In their place are many moments of worry, sadness, frustration, and bone-wearying exhaustion.

But here’s the thing.  I know God in a deeply personal way. 

And I know that often His ways in my life are filled with heartache and pain so that I will grow to be more like Jesus.

God hasn’t changed one little bit.

But He calls me to change, and His word tells me that this change toward likeness in Christ will involve the hard things. 

Sometimes I have to will myself to remember all the reasons I have told God that I love Him.

And those reasons cannot be based on my circumstances that are happy and fun.

The reasons I love God are based on WHO He is…His character and His attributes.

I cannot base my love for God on how comfortable I am.

So, like Aaron, there are times in my life when I need to look at God and ask Him to remind me that I said I love Him.

Through my tears, fears, anger, hurt…through all the questions I have about God’s reasons and logic in my life…I must not lose my love for God.

Oh God, tomorrow…when things aren’t going too well, and I feel upset…remind me that I said I love You. 

Remind me that You are the same yesterday, today, and forever.

And remind me of how very much You love me, too. 

Don’t Try to Change Me!

The word “change” is not a welcome word to many who deal with the issues of autism. 

You can phrase that concept any way you want.

“Come on, just roll with the flow.”

“Be flexible!”

“Try it.  You’ll like it!”

I have told you how Aaron won’t eat his popcorn at the theater until the actual movie begins.  The commercials before the movie are NOT the movie.  Neither are the sometimes endless trailers that are then shown.  Trailers are NOT the movie!  Aaron will continually look down at his big tub of popcorn that he has placed on the floor beside his feet, waiting expectantly to dig in when finally THE movie begins.  Then he will pick up his popcorn and visibly relax as he begins to eat. 

Aaron does the same thing at home.  When we sit down to watch a show, he will lay his snack close to him, but he will not begin to eat it until the show actually begins.  He will sit through opening credits.  He will sit through a long intro such as Blue Bloods has.  You’re not going to fool Aaron.  He knows that these programs are tricky and that they have opening music that hasn’t played yet, so don’t EVEN try to get him to eat until all the preliminaries are over and done.  Ice cream may even start melting, but Aaron doesn’t care. 

Aaron has carried this “waiting for the actual event to start” idea over to his music that he listens to in the van.  This past Thursday we started on our way to pick up our food delivery for Meals on Wheels.  We had been listening to Brad Paisley.  I pushed the button to start the music.

Aaron pushed the button off.

I pushed the button back on.

“MOM!  I don’t want to listen to music right now!”

“I know you don’t, but I do,” I replied.

He pushed the button off.

I pushed the button back on.

“MOM!!” he protested, “I said I don’t want to listen to music!”

“It’s not just about you, Aaron,” I responded with more patience than I felt.  “I do want to listen to music.”

Aaron was still and quiet for a few seconds.  Then off went the button again. 

I sighed a very deep sigh.  My lungs are in such great shape, living with Aaron.

“Aaron,” I began, “you want to wait until we actually start delivering our meals before you turn on the music, right?”

“Yes,” he replied.

“But we can listen to music now.  It won’t hurt anything to do that,” I told him.

I pushed the button back on.

I could feel the pressure building in Aaron, just like my pressure cooker at home.

He pushed the button off.

“Mom,” he began, “uh…you know…uh…”

And thus began Aaron’s attempts to start a conversation under the guise of wanting to talk instead of listening to music.  I just decided to let it go.  Hey, that’s a song!  It should be my theme song!

Bless Aaron.  I know he can’t help it, but really…!

Later that afternoon, Aaron was very happy that Gary was going with us to Nellie’s Pond for a walk.  But there was that issue of Aaron wanting to sit in the front seat of the van because that’s where Aaron sits when I drive and he and I are usually in the van by ourselves so the front seat is his and that’s the way he likes it and that’s the way it should always be…..

“Mom!” he began as he was processing his plan, “I know.  Dad can ride in his truck and you and I can take the van!”

“No, no Aaron,” I said with a laugh, “that’s not the way it’s going to be.”

But Gary, in order to give Aaron a perfectly happy experience, sat in the back seat while I drove, and Aaron sat in his front seat.

Just the way it should be, in Aaron’s world.

And sometimes we do put ourselves into his world…actually, lots of times…so that he can relax and have total fun.

Walking through life with Aaron…balancing discipline with the rigidity of autism…is certainly an exercise in patience and wisdom. 

Gary and I do not possess either of those qualities in the abundance that is usually needed but I am so thankful that God gives and also forgives.

So often, too, I find that it is me who needs to do the most changing.  God knows that all too well!

I wonder how often I am the Aaron in God’s life.   😊