Category: Adult Autism

The Church Visit

As a person with Asperger’s, Aaron often demonstrates the social impairments that accompany this form of autism.  The social protocols that most of us possess are foreign to Aaron, no matter how many hundreds of times Gary and I have tried to drill these niceties into his brain.  When these social impairments are combined with his interest in the unusual, it can be a sure recipe for embarrassment…………not his…………but mine and Gary’s, or Andrea and Andrew’s.

When we made our many military moves, we would visit churches as we tried to find the “home” church that God would want us to join and be a part of during our stay in that area.  We visited a church one Sunday morning when Aaron was a teenager.  Arriving a little later than we had planned to, we found that all the back rows were already full.  Trust me, a back row for us with Aaron was most definitely preferred!  However, on this particular Sunday we had to choose a pew near the front of the church.  This situation made us very uncomfortable as we spent a good portion of the services making sure that Aaron was happily occupied, was being quiet, didn’t make multiple bathroom trips, etc.

We already felt conspicuous as visitors…………..Aaron only added to that feeling for us.  Oh well……..we just smiled and went to the front, sitting down and hoping for the best.  Things were progressing smoothly as the worship service continued.  Suddenly, during one of the songs, there was a commotion near the back of the church – on the side where we sat.  An older woman had collapsed and her family gathered around her to help.  We all sat down and soon an ambulance was called.  The congregation was led in prayer for her as everyone waited for the ambulance and EMTs to arrive.

Aaron thought that all of this was very exciting indeed.  In fact, this was the most interesting church service he had attended in a long time……….probably ever!  Gary and I realized that he was becoming a little too exhilerated over this unusual turn of events, so we went into “Calm Aaron” mode.  We tried to redirect him from straining to look behind him at the action in the rear pews.  We rubbed his back, which he loved and which always calmed him.  We whispered an explanation to him of what was occurring as he kept asking…….loudly…….”WHAT?  What’s going on?  What happened?”

Realizing that no one in this church knew us or knew Aaron made us even more aware of how odd Aaron must have looked to everyone around us.  We reached a point where I do believe we would have just gotten up and left if we were near an exit, but this wasn’t an option to us at that point without being very disruptive.  Aaron, as usual, wasn’t displaying the proper responses to this tense situation.  He didn’t care about the poor woman who had collapsed.  He didn’t care about her very worried family members.  He definitely didn’t care about his very embarrassed parents or sister or brother.  He was excited!  Here was a situation that grabbed his attention and peaked his interest!

Aaron’s eyes were darting here and there as he anticipated the arrival of the ambulance crew.  When they finally came, they seemed to fill the front of that small church as they entered a side door.  Naturally, they ended up walking right in front of and then beside our pew.  Now Aaron had moved beyond excitement to being absolutely thrilled.  When Aaron is beside himself with excitement, he bends over at the waist and rubs his hands together.  And so there in the pew, as all eyes were on the EMTs pushing the stretcher right beside US, Aaron bent over at the waist………….rubbed his hands together rapidly…………..and said………….loudly, of course…………”COOL!!!!!”

Cool?   Did Aaron really just say, loudly, that this was cool?  Now Gary and I were in “Shut Aaron Up” mode.  We were beyond embarrassed……….more like horrified………and felt that we should stand and offer a public apology before slinking out the nearest exit.  I’m surprised that one of us didn’t have a stroke and have to be hauled out on a stretcher, too.

Well, we all survived.  The dear woman who passed out was fine after a brief hospital stay.  Gary and I recovered as well, as did Andrea and Andrew………….though it took the siblings a little longer.  As for Aaron……..he never did see the problem with his reaction, so he had absolutely nothing to recover from.  He rehashed and rehashed the entire story many, many times……….complete with bending over at the waist and rubbing his hands together.  This was, to him, a church service worth remembering!  It was for us, too, but for very different reasons than for Aaron.

And for once, we had no problem the following week with getting Aaron out the door to church.  He couldn’t wait to go back to that church to see what would happen next!

Our Nest

I remember being pregnant with Aaron and hearing the term “nesting.”  I wondered if that phenomenon was really true, and later discovered that it certainly was.  I had the rush of energy and the desire to get our nest in order before Aaron’s birth – and he was three weeks early!  Interesting!

I find myself considering our nest again, but now on the other end of the spectrum.  Goodness, how time flies!  And now I sound old even in just saying those timeless words about time.  I don’t really feel old, but soon our nest will be a little emptier, and I know that the years have rushed by much faster than I ever dreamed they would when I was knee high in diapers and runny noses.

Tomorrow, barring any delay, Andrea will officially be moving to her new apartment.  She’ll only be an hour away but the distance isn’t what matters.  This marks the beginning of her independent life.  She’s worked since she graduated from college, but has patiently still lived at home as she waited for the wisest opportunity to launch out on her own.  That time has come for her, and no one could be any happier for her than Gary and I are.  Yes, we’ll have the normal sadness as we watch her go, but the sadness is tempered by the happiness we feel for her.  She has a job that she’s wanted and that God put into her lap, so it seems, and now her own place.  Her patience has paid off and we believe that God has honored her.

When Aaron found out that Andrea would be moving, he was very surprised.  He blurted out, “NO MORE ANDREA??!!”  Well, kind of, Aaron………….she’ll still come to visit but no, she won’t be living here anymore.  He’ll miss her a lot, as we all will.  And she’ll miss him, too – in some ways more than others, for sure.

The nests I’ve seen around our yard, up in the trees, are all empty.  It’s the time of year for empty nests.  When I think of our nest, the Moore nest, I know that we have a different nest than many other people have.  We’re not alone in our uniqueness, certainly, but we are in the minority.  At our age, Gary and I should have an empty nest…………but when you have a child, or an adult, with special needs – sometimes the nest won’t be empty for a long time, and maybe never.

This fact hit me at some point when Aaron was entering adulthood.  Some of our friends were anticipating their own empty nests, or celebrating that fact when it occurred.  None of us dislike our children, but when the time of life comes that our children move on and we’re still young and healthy enough to be alone again – well, it’s just fun!  But as Gary and I dealt with the reality of Aaron’s needs, part of that reality that hit us square in the face was that Aaron may not leave home for a long time.

I’m not complaining and I sure hope I don’t sound whiny.  When we were first exploring what options we had for Aaron’s services, we chose an agency that would provide Aaron with a group home.  We were definitely headed in that direction…………..until one of the staff physically and verbally abused Aaron.  Gary and I considered that door shut, and so have kept Aaron at home with us.  Some day we will have to cross that bridge again, but we don’t know when that will happen.  His day group is a blessing to all of us, with an awesome staff.  But honestly, I can hardly imagine someone being able to love and understand Aaron enough to live with him, to care for him during his seizures, to know how to defuse him when he’s angry, to read his body language, and on and on.

There are some lessons that I have learned over the years in regards to our lack of an empty nest at this point in our lives. I don’t always practice what I preach, but I have learned:

1.  Do not compare myself to others!
This is a trap that I think we women fall into so easily.  I remember in our early years of marriage how I would listen when other wives told me that Gary and I should do this or go here or experience that.  I had to learn not to compare our lives with their lives.  Now as I think of Aaron being home I must also not compare our lives to those who are “free.”  God has given us this life with this situation, in His sovereignty, and to live any other way than in freedom would be defeating.

2.  Do not covet the life that others have!
     This goes along with not comparing ourselves to others, but coveting takes it one step further down that slope of sinful behaviors.  Other couples may have more time alone, more opportunity for travel, more peace and quiet, more time for their own hobbies or pursuits……..but I should never covet these things.  Coveting is purely sin!

3.  Be content!
     Paul had a lot to say about being content………….”Godliness with contentment is great gain;” and “I have learned in whatsoever state I am, therewith to be content.”  Being content is an act of my will and an act of obedience to God.

4.  Count my blessings!
I have so many reasons to be thankful and so many blessings to count, every single day!  And counting my blessings keeps my mind on positive attitudes and focuses me once again on being content.

As Andrea and I worked in her apartment the other day, we noticed the pretty tree out the front window.  It’s a Redbud and this spring it promises to provide lots of beauty for her to enjoy.  As I was working on something, Andrea said, “Look, there’s a nest in the tree.”  And sure enough, there sits a nest up in the branches of the Redbud.  What a perfect reminder that now Andrea is starting her own nest!  Her first nest is not like my first nest, but it’s a nest and will be blessed by God as she honors Him.

 

And I want to continue to honor God with the nest that God has given to Gary and me.  Our last bird may be here for a long time, but that’s OK.  What a privilege to mother our special bird!

Besides, what would I write about if not for Aaron?

Four or Forty Tops?

Individuals with Asperger’s Syndrome often become fixated on certain areas of interest.  This is also called “perseverating.”  When Aaron demonstrates this behavior, we call it:  “Oh good grief!  What’s Aaron stuck on now?!”

On our recent trip back east, he took his CD player with him along with some favorite CDs as well as some CDs he hadn’t listened to often or ever.  He loves oldies music and so when he started listening to The Four Tops CD he was captivated.  Over and over he played certain songs, and over and over he stared at their picture inside the front cover.  I had to look at it; Gary had to look at it – and we had to listen to Aaron talk and talk about The Four Tops.  At one point he said, “I love The Forty Tops!”  I told him that if they were The Forty Tops then they would be a choir.  He thought this was “quite funny,” as he says.

 

He observed that The Four Tops wear “shiny church shoes” and because of the tapping on one of the songs he’s just sure that they are tap dancing.  Somehow I can’t see The Four Tops tap dancing, but I could be wrong.  Bing Crosby, maybe, but The Four Tops?  Anyway, he wanted to know their names and so I looked that up on my tablet as we drove.  Then he wanted me to write their names beside their picture that he stared at on the inside cover, which required me to log onto Wikipedia and compare faces with names, etc.  I felt like I was doing a research paper!  Aaron was becoming happier by the minute as he gathered more info – or as MOM gathered more info!

In a moment of brilliance, I suggested that we check out YouTube to see some Four Tops videos.  I did that, and he was enthralled, but the video kept stopping and Aaron kept getting disappointed – which can lead to Aaron becoming frustrated – which we don’t want!  So I rescued my tablet and told him he could log onto his computer at home for the YouTube segment of our Four Tops education.  And true to form, as soon as we were home Aaron was on YouTube watching the singing and dancing Four Tops.  At supper that night, he educated Andrea on all he had learned about The Four Tops, whether she wanted to hear it or not.  She was shown the picture with the names printed, heard about their shiny shoes with which they certainly tap dance, and was told that The Four Tops twirl when they dance.

And Aaron wonders why The Four Tops sing about girls all the time, and things like love, and he cracks up when they sing about staring at the girl’s picture and kissing it a thousand times – or something like that.  In his literal mind, this is beyond comprehension.  And again, why do these guys keep singing about girls and love anyway?!  So this morning as we drove to his group, he did NOT forget to bring The Four Tops CD to the van.  When he heard them sing the phrase “I get all choked up,” he declared, “Well, that’s weird!  Why are they doing that?”  I asked him to tell me what he thinks “all choked up” means and he said, “You know – that coughing thing!!”  Whereupon I nearly became “all choked up” as I tried not to laugh!  And I will try very hard not to “choke HIM up” when he returns home today and we have to talk about all of this all over again!!

Matters of the Heart

Aaron is now 27 years old.  I know that he is a man, a grown man, and that fact is very hard to imagine.  28 years ago Gary and I were anxiously awaiting the birth of our first child.  I had made all the yellow gingham nursery curtains, bumper pads, changing table covers, and decorated with yellow, fluffy duck decorations.  Everything was as I wanted it.  And even though I went into labor 3 weeks early and Gary had just changed out of his flight suit when he rushed me to the hospital, we were really ready – for the most part – or so we thought.  What new parents can ever be really ready for the responsibility that awaits them?  And what new parents can ever comprehend the depth of love that washes over you when you first hold that little part of both of you?  Aaron was so little and perfect and beautiful.  And my radar screen was still showing sunny weather with not a storm in sight.

When Aaron had his first seizure and was diagnosed with Epilepsy, and then years later was diagnosed with Autism, we were completely unprepared.  We never, ever expected such a thing to happen to us.  To someone else, yes.  Someone we would read about in a magazine, or hear about from a friend, or receive a prayer request for at church.  The reality of this event in our lives with our Aaron was just so unexpected and unwelcome.  And as I said earlier, when I got home from the hospital after his Epilepsy diagnosis, I cried my heart out with tears for Aaron, for us, and with pleas to God for His grace and strength.

I had a choice to make and I chose to focus on what I KNOW.  And what I know is that God is sovereign.  God is in control and none of these events surprised Him or confused Him.  God loves me and God loves Gary, and God certainly loves Aaron.  I cannot and will not ever try to explain the ways of God.  There is no unfairness with God, I do know that.  So instead of wasting time and energy trying to explain the why of our situation, my choice was to trust the Who in our lives.  And that would be God.  I know from my walk with Him for all these years and from reading His Word, Who He is.  I know that His sovereign plan is best even when He doesn’t choose to reveal it all to me.  I trust Him and I love Him and I have found Him always faithful.  Those things I know.

While in Leavenworth, God gave me Psalm 18:29:  “For by You I can run upon a troop; And by my God I can leap over a wall.”  I just love this verse!  It’s my theme verse in so many ways.  Oh, the walls that I’ve run into in our life with Aaron!  I’ve shared many of them in the past few posts.  So many times I’ve run into walls, beat my head against walls, beat my fists on the walls, tried to climb walls with my own strength – but by my God, I can LEAP over the walls.  What a promise, fulfilled in so many different ways in so many different situations.  So I also know that with God, I’m a wall leaper!

But there are also some things I feel, and feel deeply.  These feelings come from within my mother heart.  I think of my heart as having various doors that open when needed.  Doors of love, of wisdom, of encouragement, of laughter, and on and on.  But there is a door that I rarely open because it is too painful.  That is the door of my regrets and wishes for Aaron.  I do not live in regret or in unfulfilled wishes for Aaron, but occasionally those thoughts slip in or that reality hits me in my heart.  Once after Aaron started going to the job skills school, he came home one day and said, “Mom, I’ve noticed something.  All the kids at that school have problems.  What are my problems?”  I struggled not to cry as I tried to talk to him about Epilepsy and Autism.  He was satisfied and seemingly unconcerned, but I knew he was pondering these issues very personally now.  And it broke my heart.  I remember when Andrew got his license and later came home with his used truck.  We had purposely not made this a big deal because Aaron was often jealous of Andrew’s life.  But Aaron looked outside and saw the truck, so he asked if that was Andrew’s.  I said yes and Aaron said, “I wish I could drive.”  Little glimpses like that into his heart made that door of my heart start coming open.  There are times for tears, but not time to wonder about what could have been or might have been.  Living in defeat is not God’s plan for me or for Aaron.

And there are so many reasons to be thankful.  Gary led Aaron to the Lord when he was 6 years old.  Aaron has that understanding.  He can walk, and run, and see, and talk (can he ever!).  Things could be so much worse.  He can read and understand, and even though he can be sooooooo irritating sometimes, he also makes us laugh – a lot!

In closing I want to post a piece that has always spoken deeply to me and I hope it will to you, as well.

 

“WELCOME TO HOLLAND”
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability- to try to
help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this………..
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.
You buy a bunch of guide books and make your wonderful plans.  The Coliseum.
The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in
Italian.  It’s all very exciting.
After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.
Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say.  “What do you mean, Holland??  I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy!”
But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.
So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.  It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.
But after you’ve been there for awhile and you catch your breath, you look around…………and you begin to notice that Holland has windmills and Holland has tulips.  Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy………..and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go.  That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away………because the loss of that dream is a very, very significant loss.
But………if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things………….about Holland.
IMG_1617

 

 

 

 

 

 

 

 

 

.

 

 

Lessons From the Little Black Ant

Let’s face it – life isn’t easy for any of us.  God has allowed Gary and I to be in a place we never even thought about as new parents to our beautiful baby Aaron over 32 years ago.  One summer I wrote some thoughts about persevering as we carry the burdens we face.  It involves an ant:

If you had driven by my house this morning you would have seen me standing in the front yard under our maple tree, watering hose in one hand and coffee in the other, with my hair blowing crazily in our Kansas wind. And to make me even more noticeable, I’m sure, was the fact that I was staring up into our maple tree for a long time. You see, God has often used my gardening as a time to teach me. Object lessons abound and this morning was no different. So I was observing God’s lesson for me this morning in the form of an itty bitty tiny black ant. An amazing itty bitty tiny black ant.

There he was, this little ant, carrying a white load that was bigger than he was. As he climbed up the tree, defying gravity with his load, he never wavered from the task at hand. Other ants were barreling down the tree, passing him as they went merrily on their way, seemingly oblivious to the load he carried. Several times he bumped into rough, curling bark that threatened to stop his progress. Then the wind blew and it buffeted him terribly. He would swerve and I wondered if he was going to fall down to the ground, but he never did. He pressed on and on until finally I could barely see him. I don’t know if he made it to his goal today or had to start over, but something tells me he accomplished what he set out to do. I know that God used that little oblivious ant to accomplish a work in my heart.

We all face those loads in life and I’m no different. I remember some of them in particular as milestones in my life. Usually the loads are painful, for that is when I learn the best. Aaron’s diagnosis of Epilepsy and then several years later of Autism were particularly hard loads to bear. Our frequent military moves were often painful as we once again said goodbye to family, friends, and ministry that we loved. Receiving the news of my dad’s two cancers, and then losing three of our parents in 14 months was at times too heavy to bear. Watching family that we love go through terrible trials takes a toll as well. That out-of-the-blue phone call that came several years ago that changed our lives and has impacted our children continues to be difficult.

I admit that lately I have become discouraged with it all. I have wanted to throw the load down and head merrily back down the tree to a life where things aren’t so burdensome. I’ve become tired of the impediments, the rough tree and curling bark. The winds of doubt and of feeling unused threaten to blow me off course. Worry, concerns, injustice – it all crowds in during the dark hours of the night when sleep won’t come. But today God spoke to me. Not with a mighty voice or an awesome miracle, but He allowed me to “consider the ant” and to be uplifted and blessed.

James said that we can know “that the testing of our faith produces endurance.” Endurance, which means abiding under difficulties. Not dropping the load and running back down the tree but living under the difficulties, pressing on toward the mark, and counting it joy. Thank you, God, for the strength that you promise; for the joy that you give under the loads of life; and for the little black ant that you sent my way today.