Included

Last night, I peeked into Aaron’s room and saw this:

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THIS…is Aaron finishing The Meg movie by watching the credits.  He keeps his eyes glued to the screen as if he is looking at the most pivotal part of the movie and wouldn’t dare look away.  He knew that I was getting ready to go downstairs so that he and I could watch our nightly show.

“Mom, I’m almost done!” he said.  “It won’t be long!”

To Aaron, the credits are a part of the movie.  He will not end a movie when most of us say that a movie is over.  No.  The movie is over only when the credits end.

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If Aaron starts something, he will finish it in his Aaron way.

Aaron has started something else recently.  It’s not the first time we’ve seen him start this thing, but it’s the most recent.  It’s not something that we can touch or see, but it’s something that we definitely hear.  And feel…because Aaron feels it deeply.

I can explain it by telling what happened a few weeks ago.  We were eating breakfast on a Saturday morning on our patio.  Gary prayed before we ate.  One thing he did was to ask God to take care of us, and also to bless and take care of Andrea and Kyle, and Andrew.  He named them, but for us three sitting at the table, Gary just said “us.”

No big deal, right?  Wrong.

Aaron’s head popped up after the prayer and immediately he said, “You don’t also want to love ME?!”

Gary NOT using Aaron’s name did NOT sit well with Aaron.

We talked about why Gary called us “us,” and explained that it had not one thing to do with not loving Aaron.  Aaron finally hushed about it, but we could tell he wasn’t totally convinced.

Like I said, once Aaron starts something, he will finish it…sometimes weeks later.  And even if we think it’s finished, one more little part of it may emerge at any moment.

Aaron has a very difficult time expressing his deep feelings in conversation.  He also has a blind spot when it comes to seeing how he is affecting others at times.  But to be so unaware of other’s reactions, he sure can see a difference sometimes in how we talk to him compared to how we talk to our other children.

For instance, when I’m on the phone with Andrea, Aaron will almost always stand beside me at some point and want to talk to her.  He waits and waits until I let him have the phone, or turn it on speaker, and then he goes on and on and on about his latest movie or game.  He doesn’t ask her about her life but gets his satisfaction by doing all the talking.  Andrea responds so well, and Aaron loves it.

But Aaron has also observed that the way I talk to Andrea, and she talks to me, is different from how we talk to him.  He doesn’t get why it’s that way, and he really isn’t able to change it, but he does know that our interactions with each other are not what they’re like with him.

This has been bothering him lately, and he’s been comparing himself to her or to Andrew.  Therefore, he strives for attention…and Gary and I strive to give him a share of our attention while we are getting more and more tired of the striving.

The other night, Gary and I snuck outside and sat on our front porch.  Just the two of us.  Talking.  Uninterrupted.

But then we heard the door in the garage close.  Aaron popped around the corner.  We were caught!

There Aaron stood, talking and talking and talking.  Talking about Terminators and Trandoshians and clones from the Delta squad and visor modes…

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Our brains freeze and our minds wander when Aaron talks non-stop.  Then he asks a question, waiting for an answer, and we do a mental hustle trying to remember what on earth he was talking about.  It’s a scenario repeated so often, and one that Aaron so often interprets as a lack of interest on our part.

A couple nights ago, Andrea texted during supper and sent us a picture of what is growing on the mystery plant in their yard.  Grapes!  It was fun to see the picture as we’ve all wondered if the plant was a grapevine.  Gary and I were happy!

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Then yesterday, she sent a picture of their first onion harvest from their backyard garden.  And again, we were happy.

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But Aaron was not happy.  Once again, he sensed more enthusiasm from us about Andrea’s life than his.  And once again we were doing damage control for much of the evening.  UGH!!

This morning, Aaron was up and on his computer at 4:30.  That’s 4:30 A.M!!!  I got him to go back to bed, but he was up again not long after.  And as I talked to him, he mentioned Andrea and her things and he hoped she wouldn’t call.

I sighed.  But not where he could hear me.  He heard me sigh once when I was on the verge of anger.

“Don’t breathe madly!!” he commanded me.

I went to the kitchen this morning, and then decided to do the hard thing that I didn’t feel like doing.  I walked back upstairs to Aaron, sitting at his computer.

“Hey, Aaron,” I said.  “Do you want some eggs and bacon?”

He did.  So later, there we were, sitting at our kitchen table eating eggs and bacon.  I wanted to be having my quiet time and talking to God, but here I was having a not-so-quiet time and talking to Aaron.

But before I prayed over our food, Aaron blew me away by what he said.

“I just want to be included,” he said.

That was truly amazing!  And as we ate, I was able to assure him that he IS included in our lives.  Yet no number of words coming from my mouth gave him assurance of that fact as much as my listening to HIS words coming from his mouth.

Really listening.  Asking questions.  Looking at his Ironman Guide Book that he ran and got from his room.

The flying fortress.  AIM.  Girl face statues.  Titanium Man.  The frozen ship.  The brain controls that make you dizzy.  And oh, SO much more!

Then I got a text on my phone.

“Better not be Andrea,” Aaron muttered.  “Like her grapes and onions!”

I wanted to laugh but knew better.  And I know better than to think that this inclusion and being loved business is settled.  I know it isn’t. But I was very touched by how Aaron calmed and responded when he knew he had not only my full attention, but my full interest.

The credits on this part of Aaron’s life movie are still rolling, and we must show interest…and also guide him to know when it’s time for a break.

And that a break doesn’t mean exclusion!

God, give us and so many other parents like us the grace to love ALL our children just the same, even when the expression of that love is anything but the same.

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A Heritage Worth Leaving

We hated to do it, but the time had come.  Our last two remaining pine trees had, or were, succumbing to Pine Wilt disease. 

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The destructive nematode had done its dirty job and now it was time for the tree service to come in and do theirs.  It’s always sad to see once beautiful trees that have stood for years come crashing down in a matter of minutes, then chopped up and hauled away like so much trash.

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In our front yard lay the biggest heartbreak, though.  Our one remaining evergreen…we called it our Gumdrop Tree…that we had decorated every Christmas for many years was dying as well, so down it came and off it went. 

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Just like that.

Gone.

No evidence remains of our once gorgeous trees.  Every piece was cut down, cut up, and driven away in huge trucks. 

Even the stumps were ground down.  Gary finished the clean-up in the following days, planted grass, and that was the end.

I thought of these scenes the following week when I was reading in my One Year Bible.  This phrase jumped out at me in Jeremiah 16:19:  “…our ancestors left us a foolish heritage, for they worshiped worthless idols.”  (NLT)

I instantly thought of my role as a parent, and have pondered since then the sad prospect of a foolish heritage.  My role as mom and Gary’s role as dad has drastically changed over the years. 

We have gone from this:

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To this:

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And it all seems to have happened so very quickly!

Plus…we are planning a wedding this year!!  Yes, Andrea and Kyle are to marry in October!! 

So I see with my own eyes the passage of time…how true is the scripture that says all flesh is grass that withers away.  Like a flower that fades, God tells us.

That’s quite a reminder that life passes quickly.  The picture of our fallen trees was a stark example to me of that truth.  Once stately and strong, they are now gone. 

But I am not that tree.  Though my life may fly by quickly, I have the opportunity to leave a heritage behind, especially to my children. 

To young moms and dads beginning on this journey of parenting, I would encourage you to be intentional as you set out to raise your children.  Live with the end result always in mind, as my friend Jill loves to remind young mommas. 

What will matter most when your children say that dreadful goodbye and leave your nest?  I can tell you that it isn’t whether they have mastered a sport or a musical instrument.  It isn’t whether they have excelled at school and have college scholarships awaiting.  It isn’t that they have tons of friends and a super active social life. 

What matters most is their personal relationship to Jesus Christ.  What matters most is their mastery of God’s Word.  What matters most is that they have owned their faith. 

We leave our children a worthless heritage when we focus our time…our energy…our money…our every effort…on things that will not matter one whit to their eternal souls.  Sports, music, grades, friends, a social life…these have their place, but they are not to take THE first place in our child’s life.  And it’s up to us as parents to guide their focus to what holds true value in their lives, even when they don’t see it that way. 

What useless idols do we worship as we raise our children? 

Fame?  Money?  Popularity?  Technology? 

It’s so easy to get sucked into the mold of this world, thinking that these issues are all important while we ignore the eternal and the spiritual. 

Foolish heritage.  What a tragedy! 

Don’t let that be said of you, dear young parents.  Start now to look ahead to the end result…to think of where each activity and each focus of your child’s life will lead them. 

Remember that God also said:  “The grass withers, the flower fades, BUT the Word of our God stands forever.”  (Isaiah 40:8)

Now that’s a heritage worth leaving!

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Houston and Home

Gary and I just returned yesterday evening from a trip to Houston, where we got to see our daughter and her boyfriend, and our son.  Aaron stayed in Wichita, where our friend Amber and her family provided excellent caregiving for him.  He has so much fun eating out, watching movies, and just generally being the center of attention.  And we have so much fun seeing our other kids, and having some time to ourselves.  It’s a win-win.

Before we leave on a trip, Aaron is very excited at the prospect of us being gone.  Remember, no filters equals complete honesty from Aaron.  But of course, while we’re gone he calls multiple times every day.  I had told him over and over that while we were at the race track where our son works that I wouldn’t be able to answer the phone because it was too noisy to hear.  That didn’t deter Aaron one bit.  He never left a message, but just pursued calling until eventually, even hours later, I would answer the phone.

“HEYYYYYY!!” Aaron would say with great enthusiasm……as if we hadn’t talked in weeks instead of it being just hours.  And then he would launch into the story of his latest happenings at home or at his day group……what he had eaten and where……what Amber or one of her kids or her husband had done……what our Great Dane was up to……..what movies they had watched……and various other stories and comments.  He never asked what we were doing or how we were, and I certainly would be surprised if he did. 

In between all his phone calls, we did have a wonderful time in Houston…..despite the horrendous traffic that we often found ourselves a part of……and seeing or hearing of multiple fatality accidents, with detours and delays.  Oh Houston, you are so huge and exhausting!

We got to see Andrea’s genetics lab that she has gotten up and running.  Quite an accomplishment!!  She is now the lab manager.  We were privileged to meet her genetics director and hear some very affirming things about our daughter, which thrills the heart of any parent. 

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Andrea and Gary

We got to spend some precious time with Andrea’s boyfriend, Kyle, who is working hard to complete his degree as a ship’s captain.  Between his studying, projects, and work, we were very happy to see him when he could spare the time.  We also got to eat dinner our first night in Houston with him and his dear parents, Kent and Marie.

 

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Andrea and Kyle

 

We got to spend time at the NHRA racetrack in Baytown, watching Andrew as he works with Cruz Pedregon Racing.  We saw Cruz run his career best time!   And again, we heard such nice comments about Andrew and were thankful for the impact he is having on others there. 

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And let’s not forget that we got see our adorable granddogs, Darcy and Oakley.  We also got to see Aries, Kyle’s dog, but silly me forgot to take a picture!

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Andrew got to have some rare time for us to get together on Sunday evening for a visit to Andrea’s apartment, and then dinner with all of us together.  Times like this happen so seldom for us, and we were very thankful for every single minute together.

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Aaron was happy to see us when we got home, although he didn’t want to hug and he didn’t want to act TOO glad to see us.  But he followed us around most of the evening, talking and talking.  Then this morning……did I really hear Aaron get out of bed at 5:25?!  And did I really hear Aaron NOT go back to bed soon after?!  Yes, indeed I did!  I was looking forward to sleeping in just a little instead of getting up at my usual 5:30, so I closed my eyes and hoped……

But no, Aaron was awake for good.  Gary was downstairs, where Aaron went at first, and then back upstairs he thumped.  I got out of bed a little after 6:00 and walked into the kitchen to the beaming face of Aaron.  My, what bright eyes he had on this VERY early morning!! 

Gary had gotten Aaron’s coupons from the Sunday paper out for him to cut, and so his coupon cutting station was all set up on the floor in front of the television.  This gave me some time to read my Bible and drink some coffee, preparing myself for the Aaron onslaught I knew was soon coming.

Sure enough, as soon as Aaron heard the door open and knew I was finished, up the stairs he lumbered and into the room he came.  I was getting ready to iron Gary’s work clothes, so Aaron sat on the bed where he could look at me and talk to his heart’s content. 

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I decided to write down a few of the things Aaron said while I ironed and then on through the morning so you can get an idea of what I mean when I say that Aaron talks a lot.  I mean, a LOT!!  This is only a mere fraction, mind you.

Aaron, while on Andrea’s bed watching me iron:  “The big slug aliens, they had also legs.  They screeched!!”

“This is how I sit when I cut coupons.  Then my leg hurts!”

“You want me to cut diaper coupons?  Do you want me to cut wipes coupons?”

Then back downstairs, where he was watching the movie Battle of Los Angeles:  “Mom, this is the OLD movie.  The new movie doesn’t have ‘of.’  It was only Battle Los Angeles.”

“Where is Los Angeles?”

“The hideout that comes down to earth, that brings their little ships.”

“Why does the military go in the hideout?”

“They put detonators in there and blew up the hideout!”

“The woman military is cute.”

“I didn’t know a woman could be a fighter!”

“Why do they make every alien giant and look like a slug?”

And on and on and on and on he went, until finally I was able to make a legit exit to my bedroom and lock the door while I got ready.  But eventually I had to unlock the door, where Aaron promptly entered and continued his monologue as if nothing at all had interrupted him.  Finally, it was time to take him to Paradigm.

“Guess what time Amber took me to Paradigm?” he asked.

And before I could answer, he breathlessly told me.

“9:13!” he exclaimed. 

He waited for my sure response, as if 9:13 was the most amazing time to leave for Paradigm……and mom’s usual time is, of course, very sub-par.

“9:13?” I asked.

“Yes!!” he replied.  “She took me at 9:13!”

I’m still not quite sure what magic there is in leaving at 9:13, but to Aaron it was impressive and he wanted it to be for me as well.  That, along with giant slug aliens that had also legs and the woman military who was cute and could fight and ships and detonators and diapers……it was just altogether a very impressive morning, let me tell you.

Home sweet home in Kansas…..where the wind blows a lot and Aaron talks a lot.

Sometimes refreshing and sometimes it rattles the nerves, but it’s home. 

And we’re thankful.

 

 

 

Do You Wanna?

I hear it all day long.  I’m not exaggerating.  Honest.  At least all the part of the days that Aaron is home I hear it over and over.

He walks into the kitchen or wherever I am in the morning.  Most days he begins his first of many words during the day with these words.  Or if they are not the first words out of his mouth, they will be close to first.

“Mom, do you wanna…….?”

And then he often stops.  He just stands there, thinking of how to fill in the blank after “wanna.”  I used to ask what it was that he wanted, but I’ve learned to just wait.  And many times, really, he doesn’t even complete the sentence.  Sometimes it’s because this question is just a habit with Aaron.  Sometimes he just asks it in order to get my attention.  He asks without even a plan in mind as to how to finish the sentence.  Other times, he does have a motive.

“Mom, do you wanna play Skip-Bo tonight?”

“Mom, do you wanna watch The Incredible Hulk tonight?”

“Mom, do you wanna take Jackson on a walk?”

“Mom, do you wanna take me to Dillon’s?”

“Mom, do you wanna give me extra money?”

I could continue for a long time filling in the blanks to “Mom, do you wanna……?”  Just like Aaron does.

But really, a majority of the time Aaron never finishes his question.  It’s like the unfinished conversation cloud hanging over his head in a comic strip, waiting to be completed but never is.

All parents know that repetitive questions from young children can be tiring.  So it is with me and the “Mom, do you wanna……?”  But it’s not just that it’s tiring to hear it all the time.

I’ll admit that I sometimes get weary of being the usual object of his question.  I know however he fills in the blank….the long pause….it will somehow involve me.  I can no more than pull my chair up to my computer after a tiring day and I soon hear Aaron’s loud thumping down the stairs from his room.  Thump, thump, thump down the first flight of stairs.  Is he going to stop in the kitchen for a snack and go back to his room?

Nope!  Thump, thump, thump down the second flight of stairs……where he then stands behind me and stares at my computer screen, maybe loudly chewing gum.  And I wait, usually not very long.

“Mom, do you wanna…….?”

So honestly, at that point, I feel a little put upon.  No, Aaron, I do not wanna…….

I might be tired physically at the end of the day.  But there are many times that I’m tired in spirit.  Like I said, tired of being the one that Aaron comes to as he fills in the blank after “do you wanna……”

It’s a normal parent emotion, that conflict between loving your child totally yet needing some space.  But when your child is a grown man and he has special needs, the emotions of spirit tiredness can cause great guilt.  I have nice breaks from the responsibility of Aaron while he’s at his day group.  I’m very thankful for that.  Yet there are times at home that Gary and I both feel the weight of being caregiver and companion to our Aaron.

My friend, Wendy, recently wrote about this on her Care Page that she has for their son, Elijah.  Elijah, who prefers to be known as Mr. Speedy, has significant special needs.  We’ve been friends with their family for a long time.  Dan, Wendy, Jeremiah, and Elijah even came to the NHRA race at Topeka to see us and Andrew.

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So read what Wendy said:

As I read my text back to myself, ” E and Me…” I think how I often I write those words. I smirk to myself with a light heart; yet heavy sigh and realize this is my life, my calling, my journey. As the rest of the kids move on and become more independent, E and me are the constant. You can be sure you never have to wonder where E is for where you find (mom) me, you find E.

 How could I ever feel lonely? I have Jesus and my super hero, Speedy, making every day a story to reread. Something about the days with my Super Speedy give me a reason to giggle and reflect on how wonderful life is with my special E. His world is heavenly; childlike and simple; the way the Lord wants mine to be.

Wendy’s sweet, powerful words did me good.  Really good.  Often, seeing life through another’s similar eyes is just what I need in order to see my life more clearly.  As Wendy said, sometimes our lives are very childlike and simple, kept that way by the lives of our boys.  I may at times sigh and wish it wasn’t so, but it is.  And there is joy in that simplicity, even on the hard days.

Maybe I need to fill in the blanks to Aaron’s constant question more often. “Mom, do you wanna…….?”

Aaron, I wanna see you healthy and safe.

Aaron, I wanna see you enjoy life.

Aaron, I wanna see you as happy as you are when you find your favorite “croysants,” as you call them.

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Or as happy as you are when you always, always stand in the back corner of the elevator at the doctor’s office……so you can feel the movement better.

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Aaron, I wanna capture your ability to experience life’s simple joys with great delight, just as much as if you were looking at the Eifel Tower or the Taj Mahal.  A lady bug, a dandelion, a frog, a song……they still tickle you to pieces.  That’s a gift!

Aaron, I wanna continue to be your favorite Skip-Bo partner……even when you cheat, and you laugh when I say, “Cheater, cheater – Pumpkin eater!!”

Aaron, I wanna count my blessings with you instead of numbering some things as burdens.

And when I feel burdened, I wanna take it to my Heavenly Father before I unload on you.

I wanna count it all joy, and know that when I don’t, God understands and He has new mercies every morning…..new yet unchanging.

Just like something else that’s unchanging.

“Mom, do you wanna…….?

 

Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms.  While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided.  A big reason I think this is because I know me.  I know me better than anyone else knows me, except God.  I know that I’m no more special than any other mom out there.  This isn’t fake humility, either.  It’s just the truth.

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all that I need.  He has all that any mom needs.  I asked God many times to give me grace for the challenges that I faced as a mom to all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs.  My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

  • Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
  • Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
  • Who dread with a passion those IEP meetings.
  • Who dread having to once again explain your child in every new setting.
  • Who dread high school graduation because……then what?
  • Who try to ignore the stares from others in public places instead of basking in admiring glances.
  • Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
  • Who are searching for the best wheelchair rather than the best bicycle.
  • Who watch their child being marked for radiation rather than getting a cool tattoo.
  • Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
  • Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
  • Who hurt because their child doesn’t have many, or any, friends.
  • Who are signing guardianship papers instead of college admittance papers.
  • Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
  • Who know more drug names and side effects than they ever wanted to know.
  • Who spend far more time finding caregivers than finding cool vacation spots.
  • Who are adept at rearranging schedules due to unexpected medical issues.
  • Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
  • Who read your adult child the same book every single night of his life.
  • Who keep waterproof mattress pads on your child’s bed – your adult child.
  • Who have a hard time finishing a conversation with your husband without being interrupted over and over.
  • And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

 

So to all of you amazing mothers of special needs children, I give you a huge high five!!  I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

 

 

 

The Detour

Aaron and I were in Dillon’s last week, where I told him to pick out some items for his Friday snack bag. I usually have his goodie bag all ready for him when he comes home on Friday but this week had been full of unexpected things that had made it impossible for me to have his bag done beforehand. He never minds picking out the items himself even though he also loves it when his bag is full of surprises. His treat bag is a reward for a week well done by Aaron…..or at least done, sometimes not all too well.

Better behaviors = bigger bag. Or so that’s how it was meant to go. Like his former teacher, Mr. Z, used to say – “Sometimes you have to make it worth his while.”

Aaron, ever the clever one, sometimes calls it bargaining. Nothing much slips by his awareness.

Anyway, it’s fun to give him something to look forward to and to work for at the end of his week. On this particular Friday, he had already walked fast and eagerly toward the bakery aisle where he knew there would be a container of croissants waiting for him. I gave my permission as he held the treasure up for me to see, but I said no to his hopeful request for TWO packages as he held up the second one for me to approve. Aaron just laughed, not at all surprised to be vetoed on that one, and then he lunged past the meat section toward the candy aisle……but not before stopping to loudly point out the lobster and shrimp like he always does. I could really just have a recording of my comments as we walk through the store on most days. He’s so predictable in many ways. In other ways, not so much.

Aaron turned left down the candy aisle, seeming oblivious to the sample lady standing nearby. This pleasant young lady had my attention, though, so I stopped at her little table to acknowledge her offer. I was distracted for a short time with little Twizzler samples and water flavor enhancers, chatting away as I am prone to do. We finished our brief conversation, said “Have a good day!” with our smiles…..and I noticed that her eyes darted down the candy aisle that was just behind us and her smile grew even larger.

I turned around and instantly knew why as she said, “Looks like he’s found some candy!” There was Aaron, getting down and personal with the Starburst Jelly Beans.

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And there was a man coming right toward him, pushing his cart and just looking at Aaron. I’m used to Aaron sitting down in store aisles when I’m not there to tell him no, but I imagine this man wasn’t at all sure of what was happening here. I was telling Aaron to stand up, but Aaron doesn’t stand up quickly from a sitting position…..and it’s quite a sight to see when he does……so now this man just swerved around Aaron and gave me a kind smile as he passed us.

I smiled back, thankful that he didn’t scowl or stare awkwardly.

At times like this I just need to have a sign that I can hold high. A sign that in bold letters says – DETOUR!!!

Aaron is truly completely clueless that he has done something a little strange or that he is disruptive. We face these moments constantly in his life. It’s just who Aaron is, and it’s who we must be as well.

We often must take a different route to our destination with Aaron, and hope that we arrive there…..and in one piece. What worked for our other two children didn’t work with Aaron and often still doesn’t. When our children were younger there were many moments of frustration from them as they tried to understand their unusual brother. They both went through times of questioning, as did Gary and I, about why Aaron acted the way he did. Even after the diagnosis of autism, we still struggled to understand what made Aaron tick.

There were times that Andrea and Andrew thought that Gary and I didn’t discipline enough. That we gave in too much. That we let Aaron have his way too often. Now that they are adults, things have settled down a lot and they really do understand their brother. They love him to pieces. It just takes time, education, and a little maturity to come to grips with a brother who can be disruptive and annoying……and super embarrassing in public!

We could be rolling right along in life and before we knew it…..DETOUR!!

A detour because of Aaron’s behaviors or actions…..a time we were forced to recalibrate…..to try to understand and to work through a situation. Or to be uber patient or thick skinned, despite the red on our faces or the words we wanted to say but couldn’t…..to Aaron or to insensitive others.

After all these years, when I turn and see Aaron sitting on the floor like he did at Dillon’s, it makes me laugh. He does look pretty cute and funny sitting there. I think people now are more aware, too, of these special needs. Their smiles and looks of understanding are more encouraging to us parents than they probably realize.

To you parents of special children, just keep the lines of communication open as much as possible with your other kids. Let them vent without judgment. Understand that age, hormones, peer pressure, and so many other things weigh into their reactions to their special sibling. Things WILL settle down with time. And in the meantime, try to spend some one-on-one time with your children, a time where they know they can safely talk to you and that you will have empathy.

And remember that we often have to take a detour, going around issues in a different way than we normally would, because that’s just how life is in their world……and we can’t change that.

Later Aaron shared some of his jelly beans with me. That’s the way it is. Understanding and love lead to sharing and sweetness.

Sticky and germy sometimes, but still it’s sharing, done Aaron’s way.

The DETOUR way.

The Nail Trim

I remember climbing on my Daddy’s lap when I was a little girl.  He was sitting in his chair near the fireplace, with his shelves of books on one side and his end table on the other.  His newspaper was on the end table where he could eventually read it at the end of a busy, tiring day on the railroad.  His Bible was also laying there within easy reach.  He read his Bible often as he sat in his chair. He was always ready and willing to listen to my questions about what the Bible said about this and that, especially as I got older.

 
But when I was little and would climb on his lap, I remember the gentleness that he showed.  In the early years he smelled of pipe tobacco and smoke…..that subtle odor that comforted me.  I can still see him emptying his pipe of the old tobacco and then refilling it with fresh, tapping it gently and pressing the tobacco down just right.  I can hear the sound of the pipe stem on his teeth and see the soft, swirling smoke around his head at the end of the day as he relaxed.

Dad was never too tired to listen to us kids as we talked to him.  He was patient and kind, and so wise.  Sometimes when I would climb up on his lap, he would read me a book.  Sometimes we would just snuggle.  And at other times, he would take my hands and check my nails.  If they were too long, he would ever so carefully trim each nail.  I sat very still, watching him take each of my fingers and cut the nail just right.  Then off I would hop and go on my way, not giving much thought to that simple deed that Dad performed. 

Until years later…..many years later.  The tables had turned, as they so often do, and I and my family had become the caregivers.  Dad was in his last month of life as the cancer he had fought for eight years was winning the battle.  I had been able to go home to help Jan and John as they cared for him and Mom.  It was a month of many cherished memories that fill my heart every day, especially during this Christmas season.  It was December when Dad died.  It was December and Christmas that he and Mom loved so much.

One day I rolled Dad in his wheelchair into the living room so that he could enjoy the pretty Christmas tree.  I helped him get onto the couch, his thin body so frail and weak.  Then I sat beside him and snuggled close to his bony side.  Words were few because it took too much energy for him to lift his head and talk.  But he still smiled….that gentle, kind smile that was his signature. 

As we sat there in the soft glow of the Christmas lights, I looked down at his fragile hands resting on his lap.  Hands that had worked hard, disciplined well, warmly hugged, and folded in prayer.  And I saw that his nails were so long.  How had we let them get in that shape?  So I looked in his tired face and I asked him if he would like me to trim his nails.  He slowly lifted his bowed head and gave me that smile as he said yes ever so softly. 

I got some clippers and a nail file, and I set to work on his nails.  I was afraid of hurting him so I worked very carefully, taking each finger and slowly trimming and filing.  He was very still and quiet as I worked.  Finally I was done.  He looked down at his hands and smiled again, and then slowly looked me in the eyes as he thanked me.  For days afterward, he talked about how good it felt to have his nails trimmed as he thanked me over and over. 

And just as when I was a little girl, the significance of that act didn’t hit me until later.  Dad showed me such love in the simple deed of trimming my nails when I was young.  Now it was my turn to show him the same love in the simple deed of doing the same for him in his weakened state.  His strength was mine when I needed him.  My strength was his when he, many years later, needed me.

And it was the love and guidance of Dad’s hands that led me to be there for him at the end of his life.  He raised me and my brother and sisters well.  He loved us deeply, worked hard for us, and led us to know and love the Lord. 

 
It seems like yesterday that I hopped off of his lap after he trimmed my nails, and ended up beside him on his couch trimming his nails beside the Christmas tree.  Now his and Mom’s memorial ornaments hang on my tree, and all I have are memories.  
 
But someday I’ll take his hand again in heaven, and Mom’s as well, and see them both strong and whole once more.