The Hard Parts

Tuesday was my birthday, and an early gift for me that morning was that Aaron got out of bed much earlier than the day before.  Why is that a gift?  It’s a gift because having to wake Aaron up to get his day going often brings anger from him, but if he gets out of bed on his own it usually comes with a far improved mood…from BOTH of us!

Aaron’s bedtime logbook that he faithfully fills out every day shows that he got out of bed at 7:16.  Not 7:15.  7:16.  I just wanted to be sure that I was clear on that point, since Aaron is forever and always very clear and precise about his times.

My memory logbook in this brain of mine has recorded that on Monday, Aaron did not get out of bed at 7:16.  He was sleeping soundly on that morning, so I had to wake him up, which can be very tricky.  Being awakened by Mom is not on Aaron’s list of Happy Ways to Start My Morning.  It’s not on my happy list, either.  That’s because there is almost no way for me to get Aaron to wake up that suits him.  Monday was a rather angry morning for Aaron, but he did go to his day group and I was thankful for the reprieve.

So, Tuesday was wonderful!  Aaron was happy, not at all because it was my birthday but because I did not have to talk to him in my weird voice…or shake his leg…or look at him with squinty eyes…or any of the other very irritating manners that he thinks I demonstrate when I’m working to get him out of bed.

I offered to fix Aaron some French toast since we had time and since he loves French toast.  He readily agreed, so while he showered…in whatever form that process took that morning because we’re never quite sure…I began the French toast.  Later, as Aaron sat down to eat, I saw him immediately place something from his plate onto the table beside him.  Can you see the little dark spot there on the table near his plate?

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I knew what it was.  The small glob was a piece of the toast that had cooked harder than he likes.  Aaron always places hard parts of food off his plate because he will not eat them, and he doesn’t want them near his food that he IS eating.

Later, when we were both done with our breakfast, I saw that on his plate was one more bite of French toast.  I told him he had one more bite to go as he got up from the table, but he told me that he didn’t want it.

“It has those hard parts, Mom,” he explained.  I didn’t push the issue or make a big deal about it.  After all, why ruin our good morning over one bite left on his plate?

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But as I looked at his plate, I thought of how much like life those hard parts are.  Hard parts are most definitely a real part of all our lives.  I wish I could just have all the plump, juicy pieces that are easy to swallow.  But no, it doesn’t work that way.  Life, all too often, seems to have way too many of those hard parts.

I remembered those set-aside pieces the next day as I took Aaron to his Epilepsy doctor appointment.  It was time for more blood work for Aaron, so after his doctor visit, we walked over to the building next door and went up to the lab. We’ve been very blessed that Aaron, from the beginning of his seizures at a young age, has always liked watching the needle go in his arm.  Even when it hurts, Aaron wants to watch each time.

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I looked at him sitting there, taking it all in, and I suddenly wanted to cry.  I wanted to cry because he looked so vulnerable.  We get used to all these doctor visits and needles and medicines and tests, but today it was like I was seeing it all fresh and new.  He was my little boy again, with his life ahead of him…all of us unaware of all the hard parts that were ahead.

Soon we were waiting on the elevator, Aaron more than ready for lunch at Applebee’s.  The door of the elevator opened.  I hesitated to get on because there was a woman in a wheelchair inside, plus the nurse who was pushing her, plus another woman, plus a man.  That’s a lot of pluses!  The woman in the wheelchair saw our hesitation.

“Come on in!” she cheerily said.  “I won’t bite!”

I laughed, told Aaron to follow me, and we stepped inside.  I stood in front of the woman in the chair, facing her.  I saw then that she was on oxygen.  She was wearing a hat to cover her bald head, and her skin had the unmistakable chalky look of advanced cancer.  I thanked her for letting us crowd in, and then I asked her how she was doing.

“Oh,” she said now with weariness, “I’ve been better.”

“I’m so sorry,” I told her.  I wanted again to cry, and I hoped she knew that I cared.

As the elevator stopped and we all went out into the hall, I saw that the man from the elevator was walking with a badly deformed leg, or maybe a prosthesis under his pants.  His walk looked so painful.  And there outside the front door was a van from a hospice group, waiting to take the sweet cancer patient to her destination.

Hard parts.  All around me were hard parts.

Still fresh in my heart was the message from a friend about her impending divorce, received that very morning.  Other concerns for family and friends weighed on my mind…death, loneliness, health issues, fears, financial problems, job concerns.

Do I sound depressing and dreary?  I don’t want to leave it there, because for those who know God and follow Him, these hard parts are also precious parts of growing closer to our Savior.  Jesus suffered, and so shall we suffer.  But we have hope because we know that God is in control of every part of our lives…the easy and the hard.

This hope isn’t like saying, “Oh, I hope that works out.”

NO!  This hope is a certain expectation that all WILL work out according to God’s will, for our good and for His glory.  The outcome may not work out exactly as I want, but my wants are not nearly as important as God’s will.

Is Aaron cured of his Epilepsy?  No.

Is Aaron cured of his autism?  No.

So, how do I handle those “no” answers?  I handle them by fully embracing that a “no” answer is still God’s answer to me.  I trust Him to know best.

And I don’t try to push those hard parts out of my life and out of my heart.  I accept their reality with God’s grace.

Of all the Aaron issues that we deal with, his behaviors are by far the hardest to handle with love and wisdom.  Gary and I get tired…frustrated…overwhelmed…angry.  But Aaron is the whole package, the easy and the hard.  The sad and the hilarious.

We wrap our arms around Aaron and love the whole person, seizures and autism mixed in with all the rest.

Like Jeremiah said:

“Blessed is the man who trusts in the Lord, and whose trust IS the Lord!”

              “You are my refuge in the day of disaster.”

And so must each of us see every part of our lives as just the right mixture that God intended, and not try to remove the parts that are hard as being too hard to handle.  Go in God’s strength and trust Him.

 

 

 

 

The Dandelion

I’m a little…actually, a lot…fired up right now because of an article I just read.  Apparently, a special-needs teacher in Indiana decided on award night to present one of her male students with the Most Annoying Male award.  Yes, you read that correctly.  She did this in front of all the other students and their parents, including the parents of this young boy.

OK.  You have the background now for why I’m upset. To publicly humiliate this boy and his parents is inexcusable.  To do it in this fashion is heartless.  And the fact that this woman actually teaches special-needs students is beyond belief.

Yesterday evening, after we ate supper and as I was cleaning the kitchen, I looked over at our kitchen table.  The evening sun was shining in the windows beside our table, highlighting the beautiful flowers that Gary brought to me last week for our anniversary.  The flowers still look so gorgeous, so bright and cheerful, that I just had to snap a picture.

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When I look at those pretty flowers, I’m reminded of Gary’s love for me over all these years, and how he showed it on this particular occasion.  Gary shows his love for me every day in so many ways, but he knew that these flowers would be a very special way to demonstrate his love on our special #40 anniversary.

Later, I went out to the garage to talk to Gary while he whittled on a walking-stick he’s finishing.  It wasn’t long, though, before we heard the familiar sound of Aaron’s fast walking headed in our direction through the house.  He loudly opened the door and barreled into the garage, primed to talk about whatever was on his mind.  So much for our quiet conversation, Gary and I both said without speaking as we looked at each other.

I became occupied with some things that needed my attention,  soon realizing that Aaron had disappeared but had not gone back into the house.  I stepped out on the driveway and sure enough saw Aaron at our neighbor’s house.  He was standing at their pool talking to them as they were, I’m sure, trying to have a few moments of conversation without interruption from either of their young boys.  After calling to him a few times, Aaron turned to come home, and I turned back into our garage.

A few seconds later, Aaron rounded the corner and ran excitedly into the garage.  “Here, Mom!!!” he exclaimed.  Into my face he thrust his gift…a decrepit looking and closed-up Dandelion.

Aaron was all smiles as he awaited my reaction, holding this unimpressive Dandelion under my nose.  Honestly, my first initial impulse was to say something like this: “Oh Aaron, how sweet, but I don’t need a Dandelion in the house.”

Yet something stopped me as I saw Aaron’s huge smile and looked at how his eyes were sparkling with delight.  So, I took the little Dandelion and instead thanked Aaron.  When I did, Aaron spontaneously put his arm around me and gave me the sweetest side hug!  If you know Aaron, you know how unusual this was!  I hugged him back, a little awkwardly because I had been turning to walk away and because I was so surprised at his hug.

Aaron chuckled, full of satisfaction at his good deed.  I told him to come with me and we would put this special flower in some water.  This made Aaron very happy!  When I put the browning and unimpressive Dandelion in a small plastic glass of water, you would have thought I had put a gorgeous bouquet in a crystal vase.  Aaron grinned from ear to ear as he bounded back outside to talk some more to Gary.

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I decided to put Aaron’s little gift beside Gary’s big gift, which only accentuated the smallness of this meager Dandelion.  Yet, in no way was Aaron’s intent any smaller than Gary’s.  Both were full of love, expressed in two different and yet two very sweet ways.

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This is Aaron.  He does, in the midst of his often perplexing and annoying ways, show us his love.  He shows love on his terms and in his times, not usually on ours.  But in allowing him this freedom we are also allowing him to be expressive in manners that suit him and that come from deep in his heart.  It’s beautiful to see!

You notice I did say that Aaron can be annoying.  Aren’t all of our children, at times?  Yet never would I publicly shame Aaron as this teacher did to her student.  Our special children often find it impossible to function as expected in our complex world, but they are rarely setting out to purposely be annoying.  It’s up to us as parents and as teachers to understand this and to respond appropriately.

I don’t always understand, and I don’t always respond as I should.  Like last night as I said goodnight to Aaron, why did I choose that time to mention his need of improving his showering skills?  It took him a while to wind down from that, just when I am most tired, but what did I expect?  There are times I need a lip zipper, for real!!

This morning I saw that Aaron’s closed and rather ugly Dandelion had opened fully and was a bright yellow.  I showed Aaron, and he smiled a smile that was as bright as his Dandelion gift.

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Our special children…ALL of our children…will open and thrive if given the opportunity.  A little water and some light totally changed my little Dandelion.  He still looked small beside the larger vase of flowers, but he has quite a large place in my heart.

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Just like our Aaron.  If given the chance, he can shine along with the biggest and the best.  It’s just going to be in HIS way, and I need to know that this is a good thing.  A very good thing!

I also need to remember to point out to Aaron his own progress and accomplishments.  He loves hearing affirmation, just like he loved seeing his Dandelion gift sitting there looking brand new.  It reminded him that he had made a very good choice!

I pray that Indiana special-needs teacher will understand this someday, too.  And I especially pray that her student will be nurtured and will open up to his full potential…and that someone certainly threw away that awful “award!”

 

The Turn Signal

A few months ago, as I headed out of our neighborhood taking Aaron to his day group, I noticed that my right turn signal didn’t sound right.  The second time that I pushed up on the turn signal lever and heard that very fast clicking sound, I knew what it was.  Either my front or my rear turn signal was out.  I drove across town, dropped Aaron off, and then before leaving I got out of the van to check the turn signals.  Sure enough, the rear signal wasn’t working.

Bummer!  Of all the days to have this happen, it had to be on the day I had several errands to run instead of just going straight home.  One of the places I had to go was McConnell Air Base…and they are super picky there about things like the speed limit and vehicles working correctly.  Imagine that!

I drove under the speed limit the entire time I was on base and was thankful that I only had to use my right turn signal once.  But I was sure that this one time would be the one time that an MP was behind me!

I had also promised Aaron that I would take him to one of his favorite stores, Big Lots, after I picked him up.  Our local Big Lots had closed, so I had to once again do some extra driving in my defective van.  I never knew how many times I needed that right turn signal until it wasn’t working!  And I decided a possible conversation with a police officer was a better choice than the conversation I would need to have with Aaron if I told him our Big Lots trip was cancelled.

I wanted to paste a sign in the rear van window that explained my situation…to let others know that I knew my light wasn’t working…to tell them that I really DO know how to use a turn signal.  How many times have I said that very thing out loud about other drivers who don’t use their turn signals?  I was feeling a little guilty, wondering how many of their signals were broken, too.

Sometimes we just can’t see and don’t understand what a person is going through, do we?  We look at the outside and think things look fine, but the inner workings of a person are far more complex than what we outwardly see.  This fact is very true for every single one of us but is very VERY true for our Aaron.

To be clear, I am not saying that Aaron is broken.  What I AM saying is that Aaron’s responses and handling of life situations can manifest outward behaviors that are extremely frustrating for others around him to understand and handle correctly.  His brain is wired way differently than typical people, and so his turn signal often doesn’t let anyone around him know the direction he is getting ready to take until he’s turned that corner and there’s no going back.

Karen Williams wrote in a paper years ago concerning students with autism:  “Rage reactions/temper outbursts are common in response to stress/frustration.  Children with Asperger’s Syndrome rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dictate they should be.  Interacting with people and coping with the ordinary demands of everyday life take continual Herculean effort.”

Williams was writing about young students, but this same description also applies to adults with autism…to our adult with autism…our Aaron – who definitely flipped his turn signal on last week at the theater.

First, the set-up:  Aaron had been home for three days this past week due to our severe weather chances and flooding concerns.  Aaron loves being at home where he is totally relaxed and able to do all the things he enjoys.  But when he must re-enter normal life, like going back to his day group at Paradigm, it is often a huge struggle for him.  And therefore, for everyone around him.

On Friday, Aaron was reluctant to go to Paradigm.  Even the thought of Friday movie day didn’t really help him.  He decided not to go to the theater, despite having his nine dollars in his wallet for popcorn and the prospect of a fun movie to see.  I encouraged him to go to the theater, and his staff encouraged him to go after texting with me.  But no one MADE him go.  However, that is not at all how Aaron saw it.  His anger was getting deeper.

Second, the incident(s):  At the theater, Aaron took a behavioral turn that everyone could see despite his lack of a working signal.  I don’t even know all that happened there, and don’t really want to know.  I believe, though, that his day group staff was told by theater staff that Aaron needed to leave.  No matter what I know about Aaron and what I understand about his autistic outbursts, these times test my love and my patience.  I’m a normal mom who is terribly embarrassed when Aaron blows it, especially in public.

I wonder what all he did there.  Who saw him?  Did anyone we know see and hear our son acting that way?  Now what?

Third, the repercussions:  When I went to pick Aaron up at the theater, he was sitting in the Paradigm van.  Aaron emerged from the van with a very unhappy face, and I knew something not-so-good had happened.  Athena, his kind staff, gave me a very brief update, but Aaron’s still-angry mood told us it was not the time to discuss it.

He and I talked about it on the way to Wal-Mart, and again inside the store.  But Aaron was saturated with frustration and guilt so I knew I could only say so much before I would push him over the edge again.  Two repercussions that initially happen with Aaron, when that angry turn he took is over, are regret and guilt.  He truly wishes that he hadn’t gone so far in his anger.

Aaron was totally compliant in Wal-Mart, overly so.  This is his way of making up for his angry actions.  At the self-checkout counter, Aaron was super helpful.  He held my coupons, helped unload the cart, and couldn’t say thank-you enough to the clerk who assisted us.

“Am I being good, Mom?”  he asked at one point.  “Am I helping?”  And he looked me square in the eyes, waiting for my response and my affirmation.  It would have been so easy for me to say, “Yes, Aaron, but I sure do wish you would have been this nice in the theater!”

But when I saw his eyes, tired from the bad day and hopeful that he was finally doing something good, I nearly cried.  Right there in the check-out lane at Wal-Mart with holiday shoppers all around me, I wanted to burst into tears for Aaron and for me.  For Aaron, because I fully know that he can’t repair his broken turn signal in time to avoid that wrong turn.  And for me, because I love him and I want to “fix” him, but I really can’t.

I turned away quickly and finished paying.  Aaron helped gather up the bags out of the cart and we walked to the van, happy that the rain had stopped.  When we got home, another storm was coming.  Aaron was concerned about the lightning while he was on his computer, so he wanted me to be sure and tell him if he needed to shut the computer off.

“Mom,” he instructed, “come up and tell me, or call to me from downstairs, OK?”

He waited for me to respond.

“I’m giving you two decisions,” he finished.

I always smile at how he says that…two decisions instead of two choices.

But I thought of how true his saying was at that time.  I did have two decisions regarding more than lightning and his computer.  I also had two decisions about that turn signal issue of Aaron’s.  I could be angry and berate him, or I could be loving and instructive at the same time.  The decision is mine to make, despite how difficult it sometimes is.  It’s easier to lash out at Aaron, honestly, but harder to be loving and patient with instruction thrown in.  Yet the first decision only brings more anger and hurt.  The second decision, hopefully, helps to fix Aaron’s hurting heart and show him a better way to handle his anger.

Back to my van’s turn signal – Gary was able to pick up the correct part and repair it that evening.  Aaron was beside him the entire time, at one point using that moment to show Gary some scrapes on his legs.  Aaron is so oblivious about how he looks in public, and at times it’s really funny.

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But at other times, like the theater incident, it’s anything BUT funny.  How we wish that we could install the part that would make Aaron’s turn signal work correctly and avoid all the damage that’s done when it doesn’t!

How many times do I wish I could paste a sign on Aaron’s back that explains his behaviors?!

I can’t, though.  We just keep driving down this road with Aaron, trusting that some people understand and not worrying about the ones who don’t.  Easier said than done!  But God does give grace and He gives us wisdom to make that right decision…and He redirects us when we don’t!

Aaron’s turns aren’t easy when his signal’s messed up, but we’re there to repair the damage and pray it works better at the next turn.

And sometimes hang on for dear life!

 

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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Work, Work,Work!

I believe every family has sayings that have been passed down over the years – sayings made by family members and then repeated again and again.  Often these comments are funny, laughed at every time they are uttered as memories of the person and the situation surface once more.

One of our family favorites is a comment made by Aaron years ago when he was very frustrated by having to pitch in and do some work around the house.

“Work, work, work!!”  he exclaimed.  “All I do is WORK!!”

No one understands the humor of his statement like we do.  That’s because we all knew…and know…Aaron.  He worked the least but complained the most.  Now when one of us repeats that phrase with great emphasis, we all just laugh and shake our heads…just like we did when Aaron first said it.

I do believe we now have a new phrase, thanks once again to Aaron.  Another one of many he has left us over the years, trust me.

Two weeks ago, Gary and I were packing up our vehicle for our annual trip to Houston.  We travel there every April to see Andrea and Kyle, and with the added bonus of spending time with Andrew, who is there for an NHRA race.

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This year we were taking lots of Andrea’s “stuff.”  That’s because she and Kyle are married now, and have a house, so her “stuff” is hers once again.

We had many loads to carry out and put in our vehicle.  Aaron was in the middle of all of it, talking and hovering, hoping that none of this activity was going to eat into our normal evening routine of watching a DVD or show.  He seems to think that his presence will continually remind me that he is my priority.

So, we put him to work.  He was willing to do so, thankfully, and really was a huge help.  He helped lift the heavy electric piano into the van, as well as carrying box after box outside for us.  Eventually, though, as we were nearing the end, Aaron’s impatience started to surface.  He knew that I still had other things to do before we could watch a show.  Bedtime was looming.  His routine was already a mess, and his nerves were showing.  He was excited at our leaving, with thoughts of all the restaurant meals awaiting him and his caregiver during the week, but also anxious at our being gone and his normal life being a little unhinged.

Aaron never offers to sit and talk about his feelings.  Goodness, no!  He doesn’t even understand what’s going on in his head and heart.  But he does SHOW his feelings by usually hurting ours.  Or by being confrontational, rude, stubborn…you get the picture.

His happiness at helping had turned instead to blame.  He blamed his anger on us for making him work.  He and I worked through all that for the most part, watching our show as he calmed somewhat, but then as I tucked him into bed later, he erupted again.

“Mom!!” he said.  “You made me do servant work!!  I don’t like SERVANT work!!”

It was so hard not to laugh!  But believe me, all of us…minus Aaron…laughed a lot about what he said as we spent a few fun days together.

Servant work!  Indeed!

In the week since we’ve been home, I’ve seen the other side of Aaron…the side that enjoys helping us.  He wanted to help me cook supper one night, and then to send a picture to Andrea – who told me that it looked I was making Aaron do servant work again.  😊

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He also wanted to share his Sonic mint with Gary that evening, so he put it on Gary’s supper plate.

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This past Saturday, he asked if he could help me with some pruning.

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He often takes our recycling to the container; brings down his laundry; sets the table; and other chores around the house.

Aaron is usually happy to help when things are going the way he wants.  But when his version of normal is anything but, then helping becomes “servant work.”  Not fun…not to be expected…not to be done!

I look at myself and I see this attitude of Aaron’s in me more than I like to admit, especially when it comes to caring for him.  I’ll be honest.  Taking care of a special needs child, even your OWN special needs child, is not all halo moments where we feel or act like angels.

Oh, my compassion is through the roof many times.  Like when I sat in the ER with Aaron for five hours four days before our Houston trip, waiting for him to be admitted to the hospital for seizures the day before and very low sodium.  Thankfully, we were sent home when his sodium level increased.

Home, where Aaron had a very long and a very scary seizure that evening.

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His seizures, injuries, staples, stitches, missed fun days, so many meds, the look on his face as he held his Subway sandwich on our drive home…so many times my heart just breaks for him.

But then he has those behaviors, rigid routines, expectations of me, nonstop talking at times, anger…

Seizures that keep me home, having to change all my plans…and his.  Extra laundry, sadness, worries for now and for the future…

A life unlike most of our peers for me and for Gary.  Not able to up and go, to travel at will, to plan for a fun life of retirement trips.

Special needs parents weren’t given our children because WE’RE so special and God knew we could do this.  God wants us to see that HE is the special One that we need, and that in no way could we live this life without Him and His grace and His strength.  Goodness knows I have none of my own.

Many times, and many days, this life that God has given me can only seem like “servant work.”

But really, there are two kinds of servant work, and it’s my attitude that determines which I will experience each day…each moment.

When I think of how God wants me to serve in every situation, and when I do this servant work with that in mind, my attitude is one of inner joy and peace – even if outwardly things are crazy, and I am frustrated.  My goal then isn’t about ME.  It’s about Aaron, and to serve him in a way that pleases God.

But when I get in my own way and take my eyes off God…and like Aaron, things aren’t going the way I want…then I sometimes get angry and frustrated.  When I do this, all too often, then I’m doing “servant work” in the way Aaron meant.  Unpleasant, yucky, unhappy work that makes me bitter.

So, to all of us…and ESPECIALLY to my special needs parent friends…know that God understands.  Just talk to Him when you’re exhausted, when you blew it, when you yelled at the child you love so much, when you’re envious of other’s lives, when you’re out of money and patience and even hope – just talk to God, lean on Him, and then know that each day is a new day.

A new day to do servant work, the way God intended.  After all, we have the best example in Christ.

“Have this mind in you, which was in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but made Himself nothing, taking the form of a SERVANT, being born in the likeness of men.”  (Philippians 2:5-7)

Servant work is God’s work, really.  And He’ll give us what we need to do it the right way, every day.

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Wonderfully Made?

Today is World Autism Day.  It’s a day to bring attention around the world to the issue of autism – its causes, its impacts, its uniqueness – and so much more.  I can’t speak for others, really, but I certainly can tell you how autism has rocked our world.

I was a young wife but not a mother yet when Gary was in flight school at Fort Rucker, Alabama.  He was learning to fly helicopters for the army, and I was learning the bare beginnings of how to be a good military wife.  I particularly remember a warm Alabama day when I was outside our house on Sharon Lane, planting Zinnias, and wishing with all my heart that there was a baby – our baby – lying in a little crib inside.  I thought that life would be complete if we had a baby.

The army moved us to Fort Carson, Colorado, and in another house we did welcome our little Aaron Daniel.  He was perfect and tiny and complete, as was my happy heart.  A baby!  A son!

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I thought often of that stunning verse in Psalm 139:14:  “I will praise You, for I am fearfully and wonderfully made.  Marvelous are Your works, and I know this very well.”

Fourteen years later, I sat in a pediatric neurologist’s office in Tucson, Arizona.  I watched him talk to and examine our son…our Aaron…not so little now, but big and complex and confounding to us.  Gone were his sweet small innocent ways.  He was instead often angry, agitated, loud, embarrassing, and the center of much unwanted attention.

Gary and I at first thought that our unusual and perturbing Aaron was this way because of the effects of seizures he had endured since the age of seven.  Then we wondered if his behaviors were due to side effects from all his seizure drugs.  Or puberty, perhaps, added to the mix?

But Dr. Gray turned to me and told me that Aaron had Asperger’s Syndrome.  I was blank.  I had never heard of this, and I had no idea what he was talking about.  Only when he defined this syndrome as a form of autism did I have an idea…a small inkling…of what he meant.

But oh, little did any of us know what this REALLY meant.  Not until you travel on this unknown path of autism, with its myriad displays affecting every area of life…ours and Aaron’s…can you understand autism’s daily, minute by minute, impact.  Impact on Aaron…on Gary and me…and on Andrea and Andrew.

So, what was I to do now with that powerful, affirming verse from Psalms?  You know, the one that so eloquently said that God makes each baby…fearfully and wonderfully designs each one.  Really?

I choose.  I choose to trust God, totally…or not.

And then, even in my trust, I look up the words I don’t understand.  Really.

FEARFULLY:  means to reverence – so I know that I am to look on God’s design of Aaron and deeply respect what God has created.  I am to be in awe of what God has formed.  Of WHO God formed in my womb.  And trust me, some days I’m totally in awe of who and what I see in this son of ours…and not always in a good way!  And even as Gary and I shake our heads, we do know deep in our hearts that Aaron is exactly who God formed him to be.

WONDERFULLY:  (This meaning is the BEST!!)  This word means to “put a difference; to distinguish; to show marvelous.”

Aaron NAILS this one, people!  Oh my goodness, he is so different than the average bear…and he cares not one bit that he is!  He distinguishes himself everywhere we go and in everything we do…and he doesn’t mind one bit that he does!  AND…he does show himself…sometimes marvelous and sometimes not, at least in our way of defining “marvelous.”

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I decided to use some words to illustrate a little of who Aaron is, showing some recent pictures to boot.

Aaron is BLUNT:  NO picture to show here!  But earlier today I told him he could go to Dillon’s with me, so from that point he was impatient to leave.  He walked in the bathroom, where I was fixing my hair.  Wanting to leave NOW, he stared at me for a few seconds and then said, “You could just go to Dillon’s on a bad hair day!”   😊

Aaron is PERSISTENT:  Aaron talks and talks and talks and talks.  The other evening, he followed Gary to the bathroom, standing outside the door as he continued to talk and talk and talk.

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Aaron is PRECISE:  Look at his notebook in which he logs his times that he goes to bed and the times he wakes up each day.

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Aaron is LOVING:  He loves to share.  If you have junk to get rid of, just let Aaron loose with it, and he’ll give it to anyone that he sees.  He’ll also give away things that you prefer to keep.  Anyway, he has a big heart.  And he especially loves animals!

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Aaron is TOUGH:  He recently had 8 staples put in his head after a drop seizure on our stairs.  Tough hardly describes all he has gone through over the years, physically and in other areas as well.  But he was thrilled to get to keep those staples when they were removed…a trophy!!

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Aaron is THOROUGH:  Here he is yesterday, watching the movie credits with great intensity and delight.  After all, movie credits are part of the movie and are to be watched!  Totally.  To the very, very end.

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Aaron is RIGID:  We want him to wear a helmet for a couple days when we think his seizure pattern may indicate that he’ll have a dangerous drop seizure.  He does NOT want or intend to wear this helmet.  His Aunt Sandra struck a bargain with him, saying that she would make and send him a toboggan hat to wear if he would wear his new helmet.  So, he wore the helmet for an agonizing maybe three minutes.  He DETESTS how it feels!!  Tactile issues have never been ones he can overcome, from the time he was a little boy.  Here the helmet lays, where it was ungraciously tossed by a very frustrated Aaron.

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Aaron is FUNNY:  He does make us laugh, some days more than others.  He delights in the things that most of us ignore or take for granted…the cows in the field, the horses, things laying on the ground that he finds, funny commercials, store decorations, and on and on.

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And I could go on and on about our Aaron.  He truly is “fearfully and wonderfully made.”

In many moments, Gary and I don’t grasp that truth.  Have no doubt, there are deep tired sighs that you will hear often in our home.  We get frustrated, lose our cool, feel guilty, and then repeat the process again.

But also have no doubt that we know…we KNOW…that Aaron has been used by God to make a huge difference in our lives.  He has distinguished himself as God has taught us more about Him and about us than we would most likely have learned otherwise.  And Aaron has shown us just how marvelous God is in our weakness and in our pain and through our tears.

And God reminds us of how marvelous Aaron is, created with a purpose.

Yes, fearfully and wonderfully made!!

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Salads and Seizures

Aaron walked into the kitchen on Saturday morning a little over two weeks ago –  March 2nd, to be precise – and saw that I was boiling some eggs.  Ever hopeful that whatever I am cooking will be something he likes and something I am making for him, he stopped and watched for a few seconds.

“Mom, what are you making?” he asked.

I told him that I was making his favorite salad.  He stared blankly, as if he was utterly clueless about this favorite salad.

“You know, Aaron,” I continued.  “The salad you love so much.”

“The salad with Ranch?” he questioned.

“No,” I told him.  “You know, the salad with the eggs on top.”

Still blank.

“And the cheese and the bacon,” I explained.

“Oh yeah!” he finally said.

But he still gave no name to this mystery salad which really is his favorite salad!  Aaron has such a hard time with names of people and pets and, amazingly enough, food!

“You call it Egg Salad, Aaron,” I told him.  “But the real name is Seven Layer Salad.”

I knew he wouldn’t remember the name, but he knew it for now.  It was fun to watch his happy reaction to the thought of this salad for supper…whatever it’s called!

We were looking forward to our day and our weekend.  The day before, on Friday, Aaron had two seizures, and so he wasn’t able to go to his day group.  He missed movie day, which always makes me sad.  Thankfully, though, Aaron loves staying home and showed no regret at all.

On Friday evening, we all went to Wal-Mart to get Aaron’s weekend treats as well as some fun food for the weekend.  We were expecting a strong winter storm to hit on Saturday evening and into Sunday, so there was excitement mixed in with our fun.  We are snow lovers!  I had especially waited until Gary was home from work so he could go with us, just in case Aaron had a seizure in Wal-Mart.  We have learned that when Aaron has one or two seizures, he might have a drop seizure.  These seizures, drop seizures, are so dangerous and unpredictable.  This past year has seen Aaron have some serious injuries from falling.  Thankfully, our shopping trip was uneventful and was fun for all of us, Aaron especially.

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There were no more seizures during that night.  Aaron was happy as could be to think of his free day ahead…the anticipated snow…making chocolate chip cookies with me…steak for supper…AND his special salad!!  Whatever it’s called!  😊

Later that morning, before noon, Aaron was downstairs in Gary’s study.  Aaron was talking up a storm of his own with Gary, as usual.  I was in the kitchen, out of sight of the stairs.  Suddenly I heard a terrible crash…and then the noise that I definitely recognized.  A seizure!!

Gary was beside Aaron in an instant.  As I started down the stairs, Gary told me to get towels.  I was panicked and in tears as I ran for towels, hurrying them down to Gary.  There was blood all over Gary’s hands.  I knew this was serious.

As he started up the stairs, Aaron had fallen backward into a file cabinet, hitting the bottom metal handle with his head and actually bending it.  Aaron is usually not conscious for a period of time after a seizure, sleeping soundly, but not on this day.  He woke up, maybe because we were holding him and applying pressure to the gash on his head.  Or perhaps he awakened because of the pain.  He was combative and scared, something we’ve never seen.  He was fighting us, trying to get away and go up the stairs as we held him tightly.

Finally, Aaron calmed down.  He wanted to know why Gary’s hands were bloody, which of course was scary.  We explained what happened and told him we would need to take him to the ER.  Soon we were in the van, me sitting in the back with Aaron while Gary drove.   Aaron was coherent then.  The bleeding had stopped, but not his pain, of course.  Yet he was remarkably calm and understanding, a trait he often displays in these frightening times.  A gift from God, I’m sure.

I thought of other gifts from God as Gary drove.  We talked about how thankful we were that the sun was shining and there was no snow yet.  I was VERY thankful that it was a Saturday and Gary was home.  And we were thankful still that there is a good hospital and emergency room out here in the country not far from our house.

We continued to be grateful that Aaron was seen immediately and that the CAT Scan showed no damage to his head or neck.  Aaron was so compliant during the scan, even though it hurt his head and the bleeding began again, worse than ever.

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But oh, how my heart hurt for our son!  I couldn’t let him know that.  Gary and I stayed strong for Aaron and for each other.  I really wanted to curl up in a ball and cry, but God gave so much grace to be fully there for Aaron.

And there was Aaron, fully talking up a storm about nuclear bombs, of all things!  Talk, talk, talk he did in his typical Aaron fashion.  He knows a captive audience when he sees one, let me tell you!!

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God gave special strength to Aaron, especially, as he endured 8 staples being put in his head.  I knelt by his side, stroking his arm and face and talking to him during the ordeal.  With each staple, he would flinch…eyes closed…and mutter a soft “ow.”  I felt like my heart was being pierced each time.

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I tell you, our children with medical issues…and I know a lot!…are true heroes.  They endure more pain IN their lives, and disruption OF their lives, than I can fathom.  And yet they just keep on going.  One of our sweetest blessings is that Aaron doesn’t feel sorry for himself or complain about his lot.  He LOVES to talk about what happens to anyone who will listen, trust me, and even to perfect strangers…but he doesn’t act like he resents this life that he lives.

However, once in a while, he does give us a glimpse into his heart and his thoughts.  He did just that on Sunday as we made his cookies, lots of snow outside our windows, and his head still bandaged.

“Mom?” he began.  “Saturday, I thought, would have been a good day, but it wasn’t.”

I really wanted to wrap him in a hug…which he would have promptly pulled away from…and empathize with him about what a bad day it certainly was.  But I knew that I needed to point him to a principle that God points ME to, over and over.

Thankfulness.

“I know it was a hard day, Aaron, but it ended good,” I reminded him.  “What did you have for supper?”

“We had steak!” he answered with enthusiasm.

“And what else?” I prompted him.

He thought a few seconds.  I was hopeful that he just MIGHT remember the name of the salad.

“Triple egg salad!!!” he exclaimed.

Triple Egg Salad??!!

How on earth did Seven Layer Salad become Triple Egg Salad?!

Whatever.

So, for that moment, we were both thankful for Triple Egg Salad!

And in my heart, for so many other blessings as well!

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