Month: September 2011

As I mentioned in my last blog, Aaron has a tendency to describe people by their physical attributes, not by their names.  He’s doing much better with that now that he’s been at Paradigm, has stability there, and has made friends. But his old habits are hard to break!

One day he was trying to tell me who all from Paradigm went to see the movie with him.  He couldn’t remember one boy’s name and so he said, “You know, he’s the one that looks like this [whereupon Aaron stuck his upper teeth way out].  He has BUCKET teeth!” 

All the times that I’m not allowed to laugh really can’t be good for me. 

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Another characteristic of persons with Asperger’s Syndrome falls under the category of social interaction.  They tend to be insensitive and lack tact.  That’s putting it mildly.  Aaron also lacks  discernment concerning what questions are appropriate to ask someone, as well as what questions are inappropriate.  For instance, he might think it’s wrong to ask you how you broke your arm but think it’s all right to ask you how much money you have in the bank.

While trying to help Aaron understand some areas that are personal and shouldn’t be delved into with people, we drilled into him that he should never ask anyone how much they weigh.  He tends to describe others by some physical characteristic, such as saying that so-and-so has a big nose or is fat.  Therefore, we went over the weight issue many times with Aaron, saying, “Aaron, never ask anyone how much they weigh.  Especially NEVER ask a girl what she weighs.”  “How come?” he asked.  And again we’d explain that this issue is very personal, especially for a girl.  Do NOT ask a girl what she weighs!  Never!  Period!

Aaron has a friend named Tiffany at his day group, Paradigm.  They tease each other a lot.  One day Aaron came home and told me that Tiffany was sitting on the couch.  “Mom, I tried to lift the couch and I couldn’t.  Man, it was heavy!”  I gave him “that” look and he knew exactly what I was thinking, so he quickly said, “I didn’t ask her how much she weighs………………I asked her how much she EATS!” 

Gary and I add lots of amendments to Aaron’s rules. 

All parents know that each of our children is unique.  The way that we communicate with one may not be the best way to communicate with the other.  For a child with Asperger’s Syndrome – well, they pretty well re-write all of our rules.  Even though Aaron is almost 27 years old, we still find ourselves having to stop before we speak and remember the best way to approach him on his literal, concrete terms. 

An example of this fact happened several years ago.  Aaron had done something wrong – I don’t even remember what it was.  As we ate supper that night, Gary began talking to Aaron about it.  “Aaron, I know you did such-and-such today.  Let’s talk about it.”  Aaron:  “I did not, Dad!”  Gary: “Well, Aaron, I know you did that today.”  Aaron: “No I didn’t!”  Gary: “You may as well quit denying that you did that today and let’s just talk about it.”  Aaron:  “I did NOT, Dad!”  This continued on for a few minutes and soon Gary realized that he was getting nowhere with Aaron. 

There are times that it’s best just to pull back, regroup, or maybe even just drop the subject altogether.  This was such a time.  So Gary quit talking and we sat there a minute, eating and hoping that Aaron would calm down. You can probably guess what Aaron said next.  “Dad, I didn’t do it today.  I did it yesterday!” 

It’s one of those “I want to put my head in a pillow and scream” type of moments!  And somehow whatever he did – did NOT seem as important anymore. 

Every year I order a box of peaches from my friend, Nancy, here in Goddard. The peaches actually come from Colorado and arrive in Cheney at Nancy’s aunt’s house. Cheney is a small town just southwest of us. Believe it or not, I’ve never actually driven to Cheney. Cheney Lake, yes – but not to the town of Cheney. Nancy has a job this year that was going to make it very hard for her to pick up everyone’s peach orders, so I offered to do it for her. She told me where her aunt lives – just a mile and a half west of Cheney, right off of MacArthur Road. Very easy to get to! And even for me, who is sometimes directionally challenged, Kansas driving has been so uncomplicated because of how flat the land is here. All the roads are pretty directly north, south, east, and west. No problem!

Or so I thought as I left my house the morning of pick-up and headed on my way to load up my van with 20 boxes of peaches for Nancy and her friends. This is so easy, I reasoned, that I don’t need my GPS system. I don’t even need to look at my navigation system on my Blackberry or check a paper map. I’ll just get on Highway 54 and go west to the Cheney exit, go south to MacArthur, and be there in no time. The day was bright and beautiful as I drove west on 54. I drove and drove, and drove some more – until I started feeling like I was surely farther west than I should be. Had I somehow passed the Cheney exit? Feeling unsure, I got off at the next exit and called a friend from Goddard that I was meeting later for lunch. No need to check a map, I thought. She wasn’t quite sure if I should continue west or head back east, so I chose to turn around and drive back east, retracing my “steps” as I carefully watched for the Cheney exit. No exit. OK, I thought, I’ll simply turn south and drive to MacArthur.

Several miles later found me, finally, on MacArthur. I was feeling a little silly but happy to finally be on my way. I had plenty of time to get there and claim our peaches. Then I saw the sign. Road closed ahead? Surely not! That must be a leftover from past road construction that the crew forgot to remove. On I drove, saw another sign, and soon came upon – the closed road. A bridge was being replaced, it appeared. The car behind me turned north onto a dirt road, so I followed. Now I could hardly see from the billowing dust that the car ahead of me was stirring up and my clean van was soon covered in brown dirt. I bumped north over that dirt road, came to another dirt road that went west, and yet another dirt road that took me south again back to MacArthur. Good grief! I was so happy to finally see the house with the long white fence and other cars there waiting for boxes of peaches. Except there were no peaches! Nancy’s uncle said that people were in line at 6:30 a.m. so when the truck came, the peaches sold within minutes. A wasted morning? Not really – because as I drove away I had time to think of how like my life this little escapade could somtimes be.

It’s so tempting to take off in a certain direction in life, not bothering to look at our road map, God’s Word – or to stop and ask our Navigator. Oh, we think, surely this decision or this activity is very clear-cut and right. What could possibly go wrong? It’s a benign endeavor with no implications, perhaps, or even something that is honorable or helpful to others. Maybe it’s a huge decision with major implications to us or others, but we “feel” like we know the right way to take and so we head off on our own down what seems to be the straight path. However, with no map and no clear directions it’s very easy to become confused. Have we gone too far or not far enough? Do we turn north or turn south? When the road suddenly closes and we face another decision, what should our answer be? How much better it is to take the time to pray, to read the clear map of God’s Word, and wait for His way to be shown to us. “Make me walk in the path of your commandments…..” as the Psalmist said in Psalm 119:35, for “Your Word is a lamp to my feet and a light to my path.” Psalm 119:105

Aaron has never been a fan of sports, especially if he’s the one expected to participate in them.  We endured a season of T-Ball on the military base in Germany.  Usually you would find Aaron sitting way in the outfield in the grass, picking in it and tearing it into little pieces like he still enjoys doing.  When the ball would come his way, he wouldn’t budge.  It would fall in the grass and roll right past him as he sat there watching it with a very unconcerned look on his face.  No matter that parents and children were yelling at him to GET THE BALL!!!  One season was enough for us.  And for the parents and the team.

When we moved to Wichita, we decided to take the kids to see our local baseball team play.  It was a sunny, beautiful day.  Perfect for baseball!  Off we went to Lawrence Dumont Stadium in downtown Wichita to see the Wichita Wranglers get some home runs – hopefully. We knew that Andrew would love to see the team play and that Andrea would enjoy it, but we weren’t sure about Mr. I-Don’t-Like-Sports Aaron.  We settled in on the bench and soon realized that it would take a lot of persuasion to assure Aaron that this day was FUN!  Aaron didn’t like the hard bench; Aaron didn’t like the hot sun; Aaron didn’t like the baseball cap we hoped he would wear; Aaron didn’t like the dumb baseball game; and Aaron didn’t like his ridiculous parents for bringing him to such an unlikable event!  We also soon realized that there was not enough hot dogs or popcorn in the whole stadium to soothe our grouchy Aaron.  We put him between Gary and I so we could double team – and we tried to enjoy the day.

Just down from Gary, sitting on the same row as us, was a man who was very loudly and exuberantly getting into the game.  He wasn’t drunk and he wasn’t mean, but he was just having a blast.  He cheered the players and he booed the players; he yelled at the refs and he cheered the refs; he made his own calls and he agreed with other calls; he swung his arms and he stomped his feet; and he did it all with great gusto.  And did I say that he was LOUD?  Aaron doesn’t do loud.  He had to be removed from the classroom in second grade when the class practiced Mexican music using castanets.  He called our VBS director in Arizona Miss Yeller because she would yell “Yee Haw” during our western-themed Bible school. 

Oh, and our neighbor down the row was not only loud – he was very big.  Big neck; big arms; big hands; big all over.  Big and loud!  We sat there trying to assure Aaron that he was having fun, but all the while Aaron was becoming more and more agitated about the big man down the row that was yelling and laughing all the time.  The Very Big Man.  And before Gary and I saw it coming or could stop it – Aaron leaned across Gary and in a voice meant to match the Very Big Man, Aaron glared and yelled, “BE QUIET!!!!!!!”  Gary and I instinctively jerked Aaron back at the same time and hissed at HIM to “be quiet!”  I’m sure Gary’s life flashed before his eyes.  I wondered how I would raise three kids alone.  But the Very Big Man didn’t seem fazed by any of this.  He continued having a great time, we continued calming Aaron, and I have no memory of any of the rest of that game.  I do know that our list of “Things NOT to Do With Aaron” had another addition that day. 

Gary shared the happy news with me last night after he came in from his daily stroll around the yard with Jackson and his check on the garden. We have a tomato!! Yes – A tomato! But believe me, in this dismal tomato year even one tomato is cause for excitement. And so this morning as I watered the front flower beds I was anticipating my time with my veggies and getting to pick our lone tomato, which I would share with Gary tonight at supper.

Soon I was in the vegetable garden, looking and searching for our surprise tomato. Which plant had Gary said it hung upon? This one? No. Must be the next one. Funny how they can hide from view so easily. I was so engrossed in finding our tomato and so happy when I finally saw it that I very nearly walked right into a spider web. Spiders and their webs are the one thing that will run me out of a garden – even more than a snake, believe it or not! In fact, Gary has given me a piece of wooden plank that I call my “spider stick.” I can wave it in front of me as I work in the garden when the plants are becoming tall and bushy, knocking down webs and sometimes squishing the spider that lives there. I look pretty weird to my neighbors, I’m sure, but it works. However, no thought of spiders or webs entered my mind this morning because I was completely focused on this tomato delight that awaited me. What a close call that was, I thought, as I backed up and then looked for the unseen spider. Later as I sprayed water on our thirsty garden, the gentle spray from the water highlighted the web and the little hiding spider ran out to see what was happening. Now I know where that web is and can avoid it, or perhaps destroy it.

Sometimes in my life I become so engaged in heading a certain direction or accomplishing a certain task that I become unaware of the dangers around me. My life can become so busy in the doing of tasks that I become lazy in being the woman that God wants me to be. It’s easy to slack off on my quiet time with the Lord, for one thing, and if I’m not listening to Him speak through His Word and not praying my heart to Him then I am in serious trouble. I run a great risk of becoming entangled in the web of self-importance, pride, or discouragement. At times the tasks that we all undertake are good or pleasurable or even productive. But do they keep us from time with the Lord or from fellowshipping and worshipping with our church family? Are we so engrossed in our activities and busyness that we forget to be watching for the one who seeks to devour us? Paul told the Ephesian believers to “be on the alert” and to “stand firm against the schemes of the devil.” And just as the gentle water revealed the spider web and the spider, the water of God’s Word will reveal to us the schemes of Satan and the webs that he weaves in order to entrap us. But we have to be reading and listening, arming ourselves with God’s power, and walking with our heads up and our eyes alert for the webs that are all around us. I never imagined that I would be thankful for the spider and the web in our garden today, but I am thankful for the lesson that God taught me using one of His scary creatures!

As funny as Aaron can be, he can also be very frustrating and hard to tolerate.  He’s so much better now than he was when he was younger, though.  As I’ve said before, puberty was especially difficult as he struggled with the highs and lows of hormones, which aggravated seizures and autistic behaviors terribly.  Siblings of these special children suffer at times as much as, if not even more than, we parents.  Andrea and Andrew had times when they were very embarrassed in public by Aaron, or were extremely frustrated by the way Aaron disrupted our home life.  Now that they are all older, things have mellowed a lot and we’re very thankful for that!

I remember when Aaron was a student in the day school.  We had come out of two very rough years in another school and we were tense about how Aaron would fare in this new school.  The day school would choose a word for the week – a word that exhibited a good character trait – and encourage the students to demonstrate that quality all week.  On Friday, one student would be awarded the honor of being Student of the Week based on how well they lived out the positive character traits of the chosen word. 

One Thursday night our phone rang.  I picked it up to find that Mr. Z, Aaron’s teacher, was on the line.  He explained to me that on the next day, Friday, Aaron was going to receive the Student of the Week award!  I was sure that Tom must have the wrong number!  Certainly he meant to call the parent that was next on the list, not us!  Aaron??  Student of the Week??!!  And when he assured me that, yes, it was indeed Aaron who was the next Student of the Week – well, it was as if the Nobel Prize Committee had called to award Aaron a Nobel Prize!  That’s how shocked and proud we were.  And the character trait that Aaron had demonstrated?  It’s a good thing I was sitting down!  It was – BEING PATIENT!!!!  We were stunned!  We didn’t even realize that Aaron knew that this was a word, much less knew how to exhibit such a trait!  You think I’m exaggerating, but you had to know Aaron. 

Tom told us not to tell Aaron, but he wanted us to know early.  Oh my goodness, I was so excited!  Aaron was in his room, so I hurried downstairs to tell the others.  I zipped in to the room where they were and said, “GUESS.   WHAT?!    Tomorrow Aaron is going to be the Student of the Week!!!!”   Gary, Andrea, and Andrew stared at me as if I had grown a second head.  Then I said, “And guess what the word of the week is?!”  And without skipping a beat, Andrea matter-of-factly replied, “Hateful?”  I had to laugh!  Oh, how well she knew her brother!  Then we all laughed and laughed when I told them what the word of the week really was. 

We were happy for Aaron and very supportive of him when he came home the next day with his award.  We also wondered when the concept of Being Patient would kick in at home.  Still waiting on that some days, actually.

It’s a little worse for wear, but here’s the proof!

Last night my West Virginia Mountaineers were playing football.  It was televised here so I was looking forward to settling in for a night of football. Of course, starting mid-afternoon, Aaron began asking his daily question:  “Mom, can we do something tonight?  You know, maybe play Skip-Bo or do our backs?”  We take turns tickling each other’s backs with a back scratcher.  I told him that I was watching WV play football, and naturally he invited himself to join me.

And so WE settled in for a night of football – Aaron in the big easy chair that he loves, with his blanket over his lap like a nursing home patient; his digital clock that also shows the outdoor and indoor temperatures; tortilla chips; water; napkins; toothpicks; tootsie rolls; and possibly more food hidden under the blanket that I wasn’t aware of and chose to ignore.  So off we go:

     “Mom, did you know that the temperature outside is 74 degrees?  Is that cold?”
     “What does LSU stand for?”
     “Which color is WV wearing?”
     “There’s another referee in that jail costume”
     “Why do football players have long hair?”
     “Mom, now the temperature is 71 degrees?  Is that cold?”
     “I notice that sometimes coaches look mad.”
     “Do you think he can make a chance happen?”
     “A BOY cheerleader?  Now, that’s funny!”
     “How does that guy get that paint off his face?”
     “See, that coach looks mad!”
     “So are there five or six rounds in football?”
     “Why is that rope up in the air?”
     “Those refs in the jail costumes move their hands funny!”
     “Mom, now the temperature outside is 69 degrees. Is that because it’s fall?” 
     “Why does that referee in the jail costume have an L on his shirt?”
     “See, that coach looks mad again!”
    
At last the game was over.  Sadly, we lost.  And the WV coach did look mad.  The temperature outside was 67 degrees.  Then Aaron asked, “So Mom, is there football on tomorrow?”   I don’t know, Aaron.  I think they cancelled all the games.  And besides, my ears hurt! 

Something that truly warms our hearts is to travel home to North Carolina or to West Virginia to see our families.  Their unconditional love for Aaron and their acceptance of him is such a blessing to Gary and I.  Aaron isn’t always extremely joyful to be around, but they love and understand him just the way he is.  And Aaron responds to that love by being relaxed and happy – and by talking – A LOT!! 

Aaron with my mother

Aaron with Leo, Gary, and me

Aaron with his Aunt Kathryn, my sister

We love our families and sure do wish that we lived closer!

On any given evening, as Gary and I eat supper, we are usually joined by several beautiful hummingbirds. Of course, we have to watch them from a distance as we look out our windows that are right there at our kitchen table. We have hung two hummingbird feeders from the eaves of our patio cover. It is there that these feisty little hummers dart and dash around as they vie for their territory. They alight on the feeders, suck in the sweet sugar water with their amazingly long beaks, and tilt their little heads back as they swallow the liquid. Then off they dart to land on a tree branch or a flower, but not for long. They are soon buzzing back in for another drink or to fight off an offending rival hummingbird. Busy, busy little hummingbirds they are!

There are times we notice that the sugar water is cloudy or the feeders are nearly empty, so I will prepare new food for our hungry friends. I measure the water and then add sugar. I let the water boil for a short time in order to completely dissolve the sugar, and then let the mixture cool. Later, after supper, Gary will go out and lift the feeders down off their hooks. He brings them to me and I wash them thoroughly, refill them with the fresh food, and give them back to Gary. He carefully hangs them again, and before long the hungry hummingbirds can be seen refilling their beaks with the tasty food. It’s a simple process which shows that we care about our little visitors and want them to be fed and content.

One evening I had a phone call and as I often do, I stepped out on the patio to sit in a chair and enjoy my conversation with a friend. It’s nice to sit in the cool of the evening and breathe the fresh air as I visit on the phone. Soon I heard a soft whirring sound and looked up to see a hummingbird hovering near one of the feeders. Off he darted only to return a few seconds later and hover again, but not landing on the feeder. He would dash away and return, dash away and return, each time hovering near the feeder like a miniature helicopter. I knew that he was afraid of me and was trying to decide if it was safe to land and safe to eat. Did he dare be off guard for even a few seconds when this threat was no near? I was so large to him, so intimidating, and he didn’t know at all if he could trust me.

Oh little worried hummingbird, if you only knew that I’m the one who feeds you! I’m the one who prepares your food with precision, who keeps your feeder clean, and who enjoys your daily activity with such delight. You bring Gary and I such simple, sweet joy at the end of every day. I would never hurt you! I have your best interest at heart and you can totally trust me. And these are the very words that I can hear Jesus saying to me. As I flit and flutter through my life there are times that I find it difficult to trust God. He can even appear to be so large and imposing in my life, and I wonder about the way that He is leading me. Oh God, can I trust You? I come so close and then I dart away, thinking that I know best and that this other way that I have chosen is better. When will I learn, totally learn, that it is You Who knows the best path for me? You prepare my food and my way with precision and great love. You enjoy me! You would never hurt me, even though the steps that you lead me down may wind through some painful and difficult times. You have my best interest at heart, and You know what I need to endure in order to bring me to the place of usefulness and maturity. And as I see You there, waiting patiently, I will learn to rest and to feed on Your Word and learn at Your feet. Help me not to waste my time and energy hovering but never landing. May I quit beating my wings about and learn to land and trust and partake of Your goodness!

“How precious is Your lovingkindness, O God! And the children of men take refuge in the shadow of Your wings. They drink their fill of the abundance of Your house; And you give them to drink of the river of Your delights. For with You is the fountain of life; In Your light we see light.” Psalm 36:7-9