Friday, September 30, 2011

WHAT Kind of Teeth?

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. 
·        

Thursday, September 29, 2011

A Woman's Weight

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. 

Today!!

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. 

Wednesday, September 28, 2011

Lessons From the Drive

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

Tuesday, September 27, 2011

The Baseball Game

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. 

Lessons From the Spider Web

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!


Monday, September 26, 2011

Student of the Week??!!

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!

Sunday, September 25, 2011

Long Hair and Mad Coaches

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! 

Saturday, September 24, 2011

The Love of Family

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!

Friday, September 23, 2011

Lessons From the Hummingbirds

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

Thursday, September 22, 2011

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!!

Wednesday, September 21, 2011

Yo-Ho-Ho and a Bottle Of.................

Before I share this Aaron episode, I must make a disclaimer:

           1.  Gary and I do not drink alcohol.

           2.  Neither does Aaron

           3.  Aaron tends to show extraordinary interest in those things that we do NOT
                do.

That being said, this particular event with Aaron took place as we traveled to West Virginia last week to see family.  Gary stopped at a gas station/convenience store to fill up the van.  Aaron asked if he could go in the store to use the restroom.  I stayed outside to organize our mess inside the van and throw trash away.  And so off Aaron lumbered (yes, he lumbers) and disappeared inside the store.  Later, as we drove away down the interstate, Aaron shared his experience inside the store. 

In his words (more or less):  "Hey, when I came out of the bathroom I saw some drinks for sale.  I thought they were the flavored water that I like so I stopped to read the sign.  I couldn't read all of it and so I had to stand like this."   He then demonstrated that he completely bent sideways at the waist in order to read the sign.  He continued:  "Then I saw this guy staring at me.  Was he staring at me because I was bent over?"   You know, Aaron, that's very possible.  And then, "After I finished reading it, it said Strawberry Rum.  It wasn't flavored water, Mom! But it was pink and I always knew rum to be orangeish."  And just how do you know that, Aaron?   And in conclusion:  "I didn't know rum was still out.  I thought beer was the most famous drink now." 

And so we had to discuss rum and beer and which is the most famous and the various colors.  This fascinated him for quite some time.  I'm sure that the guy inside the store was also fascinated for quite some time as to what he had just seen, and was left wondering if perhaps Aaron had already sampled some of the pink Strawberry Rum.  You're not alone, sir.  Aaron often leaves us wondering about a lot of things, too!

Tuesday, September 20, 2011

Lessons From the Legacy

We just went on a very special trip to visit my mother. Actually, it was a surprise for her 85th birthday. And was she ever shocked when she walked into that banquet room at the steak house and saw all of her five children there, as well as many grandchildren and great-grands! The look on her face was priceless; the tears, hers and ours, were genuine; and the love shared was a treasure. I'm so thankful that all of her children were there for her and that we got to rally around her at this very important time. You see, it wasn't only her birthday. She has also just moved into an assisted living center and so we were able to visit her beautiful new home, help her with a little of the settling-in process, and get a close-up look at her lovely surroundings and amazing staff.


One other thing we kids did while we were there was to meet at the home she just vacated. This home isn't the place where she and Dad raised us five children. They sold our family home in 1996 in order to downsize and make their lives simpler as they aged. Through Dad's two cancers, and two more moves, they continued to downsize a little more with each change. Now as I walked into the garage where many of her smaller items were sitting in boxes or on shelves, perched on chairs, or leaning against the walls, I was determined to approach this as objectively as possible. Even in the kitchen and the living room I was able to remain composed. However, when I walked into the bedroom and began to help take clothes out of her closet, I was overcome with emotion. This was the last home that she and Dad had shared together. This was where I had spent the last month of his life as I helped Mom care for him. Memories of that month, especially, washed over me. Mom is now living in a place that Dad never got to share with her. The change in her life is striking, and the end of one chapter is really the beginning of the last chapter of her life.

It would be easy to look at the "stuff" in the garage and scattered throughout the house and think, "Is this all there is now?" As we children divide the casserole dishes and Tupperware that she'll never use again, or discuss what will become of the larger items later on, is there something of more value to my parent's lives than just "stuff?" Eventually, Mom will perhaps have to downsize even further if she moves into the nursing care section. Bit by bit, her life is being sifted of all earthly belongings. Eventually, she'll be left with absolutely nothing. On the day that her body ceases to live and her soul is in heaven, she will not take even one little spoon or one little memento with her. And what will matter on that day?


What will matter the most is that my mother knows Jesus Christ as her Savior. She has the confidence, as do her family, that she will join Jesus and my Dad in heaven. And we, her children, have the legacy of a godly heritage left to us by parents who dearly loved the Lord and dearly loved their family. While earthly items are divided, our godly heritage is safe in each of our hearts and homes. Now this heritage, this legacy, is being multiplied as we have tried to raise our children to know and love the Lord. There is no earthly value that could ever be placed on such a spiritual treasure! No executor of an estate ever oversaw a will that held anything more important than this God-honoring example that our parents have left to us. This legacy isn't an item that will be put on a shelf in our homes to later be divided among our children, but is carried in our hearts and hopefully lived by our example and passed to our children each day of our lives. Thank you, Mom and Dad. You have left us rich indeed.

Friday, September 16, 2011

Taking a Trip - Aaron Style

Lest you wonder if I've run away or decided to give up on blogging - nope!  I am not so easily deterred from my new venture.  Actually, Gary and I have taken a trip to West Virginia and North Carolina.  We went to celebrate my sweet little Mother's 85th birthday by joining my 4 siblings and many other extended family in a surprise party for her.  Then on to see Gary's family in the beautiful Smoky Mountains.  I'll have more to say on all that later, but we do have Aaron with us on this trip.  He loves to go with us!  He sits behind us in the van, surrounded by snacks, listening on his CD player to the Four Tops, or watching a movie about giant space alien aircraft landing on earth.  What's not to like?!

Then Gary and I are his captive audience, listening to his stories or answering his many questions.  And hearing him say, "I'm not asking when we're going to stop to eat lunch."  And maybe 15 minutes later, "See, I haven't asked when we're going to stop for lunch."  Awhile later, "Are you glad I haven't asked when we're going to eat lunch?"  For crying out loud, Aaron, JUST ASK AND GET IT OVER WITH!!!!   Of course, his first question as we planned this trip was, "Are we taking snacks and stopping at restaurants?"  And as we drove from the house, "Are you taking that thing that talks?"  Which one, Aaron. You or the GPS?

Wednesday, September 14, 2011

Lessons From the Toad

I saw him out of the corner of my eye as I watered one of our back flower beds on a very hot afternoon. I wasn't sure what it was that had drawn my attention and so I leaned down slightly to see what had created the slight movement that I had seen. And there he was, with his head and half of his body sticking out of his little underground home. A small toad! So now I knew what had been living in that mysterious hole that had been dug in the mulch among the pink Coneflowers. I was very relieved that it wasn't a huge spider, for one thing, and I also thought that this wee fellow was pretty cute. As I gently sprayed the flowers in the summer heat, my small toad neighbor just stayed where he was. And as he sat there with a little mound of fresh dirt on his head, I observed some toad behavior that I had never seen before. He lifted his head slightly as the water softly fell on him and then shook his head a bit. He blinked his eyes but didn't seem bothered by the water that fell over his face. In fact, I thought that he was enjoying the cool shower that was cascading over his hot, bumpy body. It certainly was a very stifling day and I could imagine that he was pleasantly relieved at this unexpected relief from the dryness and the heat.
As I watched my toad's reaction to the cool water, I thought of the times in my life that I have felt completely worn out and depleted from the heat of life's unrelenting ups and downs. At times I have felt dried up and burnt from the stresses that this life can bring. It seems that there is no relief as day after day of disappointments or worries beat down upon my unprotected head. Yet in my heart I know where relief can be found. I can say with David in Psalm 63:1 - "O God, You are my God; I shall seek You earnestly; My soul thirsts for You, My flesh yearns for You, in a dry and weary land where there is no water." Meeting God in His Word and in prayer is where my cool, refreshing relief is to be found. He is there to quench my thirst and His Word is there to revive my dry, parched soul. Then I can say along with the Psalmist, "This is my comfort in my affliction, that Your Word has revived me." (Psalm 119:50) I want to let the refreshment that God offers me wash over my spirit. I want to lift my head, blink my eyes in wonder and praise, and let His Word revive me so that when the heat is on, my soul is calm and my spirit is renewed. Thank you, dear Lord, for the little bumpy toad You sent my way!

Tuesday, September 13, 2011

Lessons From the Weeds and Bugs

I knew I couldn't ignore the vegetable garden any longer. I hadn't really been ignoring it, but very muddy soil from several hard rains and my busy schedule had kept me from being able to tackle what I knew needed to be done. I had walked out to the garden daily; had stood outside the perimeter and looked at the mess inside; had thought and planned and observed from a distance - but now it was time for action. And so with hoe and rake and buckets and pruning shears, I put on my gloves, stepped over the low fence, and began the work.
I yanked and pulled and hoed with a vengeance, racing to beat the dark clouds that were on the horizon. My garden was so cluttered and ugly from all the storm damage and the inattention. The work was going fairly quickly, but then I stopped and stared down at the cucumbers and squash and tomatoes in their cages. That job was going to be slower because I had to be careful not to jerk up the roots of the vegetables in the process of pulling out the weeds. It meant getting on my knees and carefully culling out the weeds. One by one I had to pull them carefully from the soil and dump them in the bucket. It gave me a chance to tenderly inspect each plant for damage. That's when I also saw the bugs. They, along with the determined weeds, were seeking opportunity to take over and destroy my vegetables. My battered veggies were easy prey for these pests. My garden plants not only needed a good weeding, but they also need a healthy dose of bug spray and an energizing shot of fertilizer.
Likewise, I am much the same as my distressed vegetables. The trials and storms of life have at times left me very vulnerable to the attacks of Satan. How easy it is when I'm beaten down, tired, and discouraged to listen to someone else's voice other than the calm and loving voice of my Lord. Sin can enter so easily and grow so quickly, like weeds and bugs. Satan loves to plant negative thoughts in my mind and get me to focus on my situation rather than on God and His Word. Sins such as pride, bitterness (that's a big one!), unforgiveness, gossip - I could go on and on - grow like weeds in my heart and crawl around my thoughts like unwelcome bugs. It takes a good dose of God's Word daily and energizing prayer to Him to keep me where I need to be, especially when I'm battered and bruised from the storms of life. David said in Psalm 1:2 that we should "meditate day and night" on Your Word - which means to live life in accordance to God's Word. So even when I don't feel like it I need to climb in the garden of my soul, yank and hoe and rake, and sometimes just get on my knees and pull away the sins which so easily weigh me down and destroy my roots. Only then will I be able to "yield fruit in its season" and prosper like God desires.

The Bedroom

When Aaron was a student at the Day School, Tom (his teacher) would have tea times with Aaron.  They called it "Tea With Tom."  Tom and Aaron would drink tea and just talk.  Isn't that amazing?  That's just one example of what an awesome teacher and person that Tom is.  Anyway, when Aaron was getting ready to graduate Tom said that he wanted to have one more time of  "Tea With Tom."  The seniors had finished attending classes, so Tom came to our house for tea.  Gary had to work, so it was only me at home with Aaron.  They invited me to join them for tea and I eagerly agreed.

I have to explain that off of our kitchen, down a couple little stairs, is a short hallway with a bathroom on the right and a guest bedroom at the end of the hall.  Gary had a bad cold at this time and in order not to bother me at night with his coughing, he had been sleeping for several nights in that guest bedroom. 

Back to "Tea With Tom."  We sat at the kitchen table, Tom and Aaron and I, sipping our tea and talking.  Mostly listening to Aaron talk.  Finally Tom looked at me and asked if he could use our bathroom.  I pointed down the little hallway to show him where it was.  He then saw the extra bedroom and said, "Oh, I see you all have a guest bedroom here."   And my dear Aaron quickly replied, "Yeah, that's where my dad sleeps.  He doesn't sleep with my mom anymore."  Again, where is a sinkhole when you need it?  So I started to explain, and Tom smiled and told me I didn't need to say anything, and I said that yes I do need to say something, and it's all kind of a blur.  Aaron could tell that his statement had created a reaction and he thought it was all great fun.  If we had a doghouse, that's where HE would have been sleeping! 

Monday, September 12, 2011

Talk a Little - No - Talk a Lot!

I took Aaron to get his hair cut when he came home today. Great Clips was crowded. Now everyone who was there knows our plans for the next 10 days. Leave it to Mr. Talks-A-Lot who also talks loudly!

Jackson - Dane or Drum?



As most of you know, we have a 200 pound Great Dane, Jackson. Aaron just told me, "Mom, Dad told me I shouldn't use Jackson's head for a drum - but he's so much fun to play!" I'm so thankful that Jackson is a gentle giant!

The Nut

During the time that Aaron was in school, we were already exploring what several agencies might have to offer for his future.  We worked with Vocational Rehab for awhile to see if Aaron would meet their criteria for services.  They did a great job but their program really wasn't what Aaron needed.  As part of the process with Voc Rehab, Aaron had to undergo a type of psychological testing.  He had been given quite a few psych evals over the years and so I wasn't at all concerned about it.  Little did I know.

We entered the psychologist's office and the receptionist handed us the Minnesota Multiphasic Personality Test.  I expected someone on the staff to usher Aaron to a room and begin administering the test.  Instead, I was told that Aaron would take the test by himself!  They obviously knew nothing about Aaron.  I told them that this was impossible, so they handed me a tape recorder and told me that the test questions were on the tape - so Aaron could listen to each question out loud, still by himself.  And still impossible, I told them.  So I told them that even though Aaron could read quite well he would still need the test administered to him orally by a person who could help keep him on track.  They were totally unprepared for that, so they informed me that I could give him the test.  I was shocked.  "His mother can give him this test?" I asked.  They said yes, so they led us to the test room - down 3 flights, ALONE, in the basement area with a door that led outside to a busy street.  They were going to have Aaron come down to that room by himself to take this test - a test that had over 600 questions!!  I was not happy.  I later learned from my good friend, Dr. Athalene McNay, that this test should never had been given to Aaron in the first place, by anyone.  Even the web site tells you that. 

And so we began the long, drawn-out test.  I would ask the question out loud and Aaron would blacken the correct answer.  I didn't offer any help - until we started coming to questions that Aaron took literally and would have painted him in a very questionable light.  For example, one question said:  I like men.  Aaron was getting ready to circle yes when I stopped him.  How do I explain this to him, I thought?  I told him not to circle yes yet and he said, "Well, why not?  I like Dad!"  Oh brother!  So I said, "This means that you like men like you would like a girlfriend."  He looked at me like I had three eyes, and then with great disgust said, "That's STUPID!!"  There were others - one statement said:  I smell funny odors.  Again, Aaron would have circled yes, saying to me, "I smell skunks!"  On and on it went.  After sitting there for over 2 hours we were only a little over half-way through.  He was very tired and ready to go home when we were called up to his actual doctor visit.  I met with the doctor first, voiced my concerns and frustrations, and was met with a patronizing lecture by this doctor as he slouched in a chair and swung his jeans-clad leg over the arm of the chair.  Then Aaron met with him by himself.  I would love to have heard that conversation!  Afterwards, we had to go BACK downstairs and finish the test.  UGH!  It was a long and frustrating day - and I knew that this test wouldn't show much at all of any validity about Aaron. 

At supper that night, Gary and I were talking about the day but didn't want to further frustrate or question Aaron.  Finally I asked Aaron, "So, what did the doctor talk to you about?"  Aaron rolled his eyes and said, "He told me to repeat some words after him."  "Really? What words?" I asked.  Aaron said, "He told me to say apple, onion, nut."   "So what did you say?" I asked.  And with a very exasperated sigh, Aaron replied, "I said apple, onion, nut............you're a NUT!!"  We had to hide our delight but we were thinking - YES, YES, YES!!!!!!  Touche, Aaron!!

Aaron and the Mulch

Autistic individuals usually have an activity that calms them.  For Aaron, it's sitting outside and breaking mulch or small leaves and twigs into a container.  He'll do it for long periods of time on some days.  He's usually making up stories in his head while he breaks the mulch or whatever into little pieces and drops them in the container.  He's unwinding or perhaps calming down after a stressful day on some occasions. 

I remember when he was a student at the day school.  They had a padded room there, literally, for those who were having rages or were out of control.  They could be put in that room and given a safe place to erupt and then calm down.  Tom asked me if I wanted them to give Aaron time in that room on days when he was becoming very frustrated.  But I told them to give Aaron a container and access to some leaves, grass, or twigs.  Fortunately, there was a door that led from their classroom to a grassy area outside.  And also fortunately, Tom listened to us and gave Aaron a container and permission to go outside and "play in the mulch", as Aaron says.  It worked beautifully for everyone.  Aaron calmed down without always erupting, and Tom and the staff were spared from having as  many breakdowns from Aaron. 

Aaron was outside with his container this morning, "playing in the mulch."  So I snapped a picture of him.  No telling what stories are inside that head of his!



Sunday, September 11, 2011

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 than 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.















.








Saturday, September 10, 2011

Aaron's Story - Part 4

It was the summer of 2006.  Aaron's milestone graduation was over.  He was 21 years old, under doctor's care for Epilepsy and Asperger's Syndrome, not able to work on his own, and had been on the waiting list for state services for over 3 years.  We were very concerned that without the routine of school he would soon want to only be at home and it would be very difficult to get him out into the real world again.  Our phone rang one day in July of that summer  and there on the other end was Aaron's case manager.  She had such wonderful news for us.  Aaron's name was now at the top of the list!  The timing couldn't have been more perfect.  However, we had a series of critical decisions to make in a very short time.  The pressure was on, but we knew that God would direct us.

Thus began a long stretch of appointments as we tried to sort out what was available to Aaron.  Would we try a work environment for him, and if so, where?  Should we pursue a residential setting, putting Aaron in an apartment or home?  How many roommates would he have?  What kind of medical support for his nighttime seizures?  Would a day program, where he would be involved in activities every day, be better?  If so, which one?  And so we went to a multitude of agencies for interviews; met with potential roommates; looked at possible housing; went to several work centers; and filled out tons of paperwork.  There was so much to understand - so much to think about - so many factors to consider.  Aaron was at times overwhelmed with it all.  He definitely told us he did NOT want to leave home but we understood that and reasoned that with time his mind would change. 

In the fall we had made the decision to have Aaron work at a sheltered workshop for 3 days a week and then go to a day program for fun activities the other two days.  The day program agency also provided residential services, buying very nice homes on our side of town and staffing them with trained support staff.  On the 2 days a week that Aaron went to this day group setting he would end the day at one of the homes as he waited for me to pick him up.  This way he could see the home setting that he would hopefully live in one day and become adjusted to it before the time came to move. 

The sheltered workshop that he went to 3 days a week has a great reputation and does a good job of providing their clients with a multitude of services.  Aaron was there to work for the most part, though, on the days he attended.  A bus would pick him up at 7:00 a.m., which was a struggle for Aaron because of having to get up so early.  Also, the workshop was very noisy with all levels of special needs and the noise of machinery and talking and yelling.  Many days the center had no contracts and therefore no work, so there was lots of down time.  Most of Aaron's pay checks were for 2 or 3 dollars.  The majority of his check went to pay for the bus ride.   This setting was becoming more and more frustrating for Aaron.  One morning before the bus came, he threw his coffee cup on the floor in frustration.  We were feeling that we needed to find a better setting for him.  But where?

In the meantime, his day group seemed to be going well.  One Friday, though, when I picked him up from his group at the group home, he was crying.  When I questioned him, he just said that he was tired and wanted me to hurry and get there.  It wasn't until the next night, when he and I were playing Skip-Bo, that he began to tell me what had happened the day before.  He said that the staff that was driving the van home from bowling got mad at him.  This man stopped the van, pulled Aaron out, threatened him, pushed him, continued to berate and taunt him at the house, etc.  Thankfully it was only verbal and physical as far as pushing.  Aaron told Gary the same story, word for word.  We told him not to tell anyone else until we could talk to his case manager, but when she came to his workplace on Monday morning he began to tell her.  She took him to her office, wrote down what he said, and before we even knew anything an investigation was already in the process with SRS.  Oh my!  We had no idea how this would all turn out, but we were mainly concerned for Aaron and his well-being.  Gary and I had meetings with this agency, confronting them with the issues, and nothing was resolved.  SRS finally determined that it was Aaron's word against the agency so that was that.  But we felt that God had definitely shut this door and so we no longer pursued a residential setting for Aaron.  We also pulled Aaron out of the work center, so now we were back at square one.

One of the agencies that we had briefly interviewed months earlier was a group called Paradigm.  We met with them again, going to a restaurant where they had the group out to eat.  The clients were all very high functioning and were so friendly to Aaron, welcoming him and talking to him.  Aaron seemed comfortable and at ease with them, and with the very outgoing staff.  We decided to give this group a try and have been with them since that time.  Paradigm has an awesome staff who are young and fun loving, understanding of Aaron, and very patient.  Every weekday they are on the go and Aaron has really blossomed there.  Some of the staff even occasionally come over on a weekend to take Aaron to lunch!  It's been the perfect setting for Aaron and a huge blessing to Gary and I. 

So at this point in time Aaron still lives at home.  We know that decisions will need to be made in the future for him to live somewhere else.  We know that we need to prepare him - and ourselves - for that reality.  We thank God for the doors He has opened, for the wonderful people that He has put into Aaron's life, and for what He will yet do.  And I thank Him over and over for the work He has done in my heart.  That will be another story. 

Aaron's Story - Part 3

We made our last military move in June of 1999.  Gary had retired from the Army and taken a job in Wichita, Kansas.  Gary, Aaron, and I had already made a quick house hunting trip, had bought a house, and so we moved in on July 3, 1999.  Our lives as civilians had begun!  We spent the summer unpacking, working on our house (still not done!), and just adjusting to our new town and our new lives.  And I immediately set about getting Aaron established with doctors, as well as making dozens of phone calls to see what services might be available to us that would benefit Aaron.  There were shut doors and there were open doors as we settled into our life in Wichita.  I was starting to get a handle on what I needed to do - slowly.

I continued to home school all the children, including Aaron.  That first year in Wichita I taught him totally at home.  Our second year we had a wonderful tutor for Aaron, a friend from church with a degree in special ed.  Amy did a fantastic job working with Aaron on several subjects, and I continued to teach him the others.  I soon realized, though, that Aaron was reaching a point where he had probably learned all he could as far as math, grammar, etc.  We needed to think about preparing him for the adult world.  We had learned about a school in Wichita that taught young adult students how to function in the working world, so I made inquiries and we began the process of getting Aaron enrolled in this school.  Aaron had to be placed there through the local high school. which meant that we had to enroll Aaron in Goddard High School so that he could transfer to the job skills school.  He went through both academic and psychological testing, and we had many meetings as we set up an IEP (Individual Education Plan) and got other issues ironed out.  The staff at Goddard worked so well with us and we were very pleased.

Aaron started at his new school in the fall of 2001.  This school had many good concepts and in some ways was a positive place for Aaron.  There was a parent group that met and through that we learned so many things we needed to know, such as when and how to pursue guardianship, what state services were available, the importance of a case manager, etc.  However, some of the staff at this school really didn't understand Aaron.  The more they pushed Aaron, yelled at him or belittled him, the more he reacted.  No one was happy!  Our second year there, Aaron had a one-on-one para.  She was so kind and caring, and was a life saver to Aaron and to us during that year.  But I continued to get the phone calls from the school about Aaron, we contined to have meetings to try to solve issues, and finally we all knew that Aaron had to transfer somewhere else.  This was a very stressful time for all of us.  We were so afraid of what the next school would hold for Aaron.

That next school was the Goddard Day School, here in our school district and near the high school where he was enrolled.  This school was a transition school for those who couldn't function in a regular school setting.  Before Aaron started classes, Gary and I got a phone call from his new teacher, Tom Szambecki.  Tom was near our age and had just gotten his degree in special ed. after working in other fields.  This was something he had always wanted to do - and we soon learned why.  Tom was amazing!  He was warm, patient, kind, and wise.  During that first phone call, Tom introduced himself to us and assured us that he had Aaron's best interests at heart.   The entire staff at the day school had such an understanding of Aaron.  It was a very positive and nurturing three years there for Aaron.  He even attended some classes at the big high school, marching in with Tom on that first day as if he owned the place.  Sure, there were bumps in the road but with a caring staff we were able to navigate over the bumps without having a major crash every few days.  Aaron even went to summer school there during that time and loved it!

Medically, we eventually became patients at the Epilepsy Center in Wichita.  Again, this has been such a gift from God to us and to Aaron.  The doctor there, an Epileptologist, and his staff have been awesome in helping Aaron with his seizures.  In 2003, Aaron was in the hospital for five days as he had a Video EEG.  This test helped confirm what new treatment might be best for seizure control.  In 2004, Aaron had surgery to have a Vagal Nerve Stimulator inserted into his chest.  The wire then connects to his Vagal nerve in his neck.  This is all similar to a pacemaker.  Shocks from the VNS travel to the brain and can help control seizures.  Aaron had lots of adjustments done to the VNS and many doctor visits to monitor his progress.  However, Aaron was one of those rare patients for whom the VNS actually seemed to make his condition worse.  Seizures were increasing and he was having 12 or more big seizures a month as well as other kinds, and having more seizures during the day than he had been having.  We eventually had to have the VNS turned off.  Now Aaron's seizures are almost always during the night when he's sleeping, and he doesn't have nearly as many as he used to have. 

In May of 2006, Aaron graduated from Goddard High School.  He marched with the regular graduating class in the Coliseum with Tom at his side.  How awesome!  Aaron was allowed to be one of the first to receive his diploma so that we could leave afterwards.  It's just too hard for Aaron to sit there for such a long time and besides, we were going to get pizza!  That's the real reason that Aaron was there and he wanted to get on with it!  This was such a great milestone for Aaron and a great testimony to God's faithfulness.  But now what would Aaron do?  What door would God open now?  That's next!


Friday, September 9, 2011

Aaron's Story - Part 2

Gary got orders in the autumn of 1995 for Fort Huachuca, Arizona with a school en route - which meant that he would be gone from October of 1995 until March of 1996, with a break for Christmas.  At least he wasn't in a war zone and we were pretty used to these separations, but it was still very difficult because of Aaron's seizures and behaviors.  I was home schooling all three of the kids, too, as well as trying to sell our house so there were some major stresses.  Our church family in Leavenworth and our neighbors were awesome, though.  I really didn't want to leave there and go to the desert of Arizona - at all!  But God knew what we needed.

God gave us wonderful housing on Fort Huachuca - old but wonderful because we had four bedrooms and a stunning view of the mountains in our wide open back yard.  We adjusted to our new life there in this environment that was so foreign to all of us and we grew to love it.  God also gave us another precious church family.  I just can't emphasize enough how meaningful it is to have the love and support of a good church family.  It's valuable for any of us, but for us with Aaron it was vital.  I won't mention names but many thanks go up to the Lord for our dear church families in the places God has put us. 

And Aaron was fully into puberty.  I can describe puberty for Aaron in one word - AWFUL!!!!!!  I know many of you parents will shake your heads in agreement at that one.  With Aaron, his seizures were increasing and we were trying all kinds of different meds in various doses.  The closest military pediatric neurologist was in El Paso, Texas - a 5 hour drive away!  Since Gary was the active duty sponsor, he had to be the one to take Aaron.  On some days Aaron would have 7 or more seizures, hard Grand Mals as well as other kinds, and we had no doctor close by to take him to.  What a nightmare! 

Also, his behaviors were becoming harder and harder to understand and deal with.  Discipline wasn't working and we were all struggling.  Poor Andrea and Andrew had to endure so much, I know, as they watched Aaron becoming almost impossible to live with on some days, and saw Gary and I beating our heads against the wall as we tried to deal with Aaron and with doctors.  Finally, Gary requested permission from the military to be moved to a civilian pediatric neurologist in Tucson.  Our request was approved and we were so happy!

On our first visit with Dr. Gray, Aaron stayed in the waiting room while I visited with the doctor alone for a few minutes.  I wanted to explain Aaron to him without Aaron hearing all the negative things I had to say.  Eventually, though, the nurse stuck her head in the door and asked if Aaron could join us.  She said he was sitting in the corner, slowly taking apart the silk tree that was there.  I had to smile.  Yep, that's my Aaron!  Dr. Gray only needed a couple minutes with Aaron before he looked at me and said, "I know exactly what this is.  Aaron has Asperger's Syndrome!"  The rest of the exam proved further that he was correct.  I had so many questions about this syndrome that I had never even heard of.  Aaron and I finally drove home, and again that night I had a good cry and some time of prayer - and then faced our future. 


Our research confirmed to us that Aaron did indeed have this high functioning form of autism.  In fact, in many ways he could have been the poster child for Asperger's.  It was unusual and sad that he wasn't diagnosed until he was 14.   Knowing Aaron's diagnosis, facing it, and learning how to better deal with his issues was a huge step in the right direction for all of us.  But most of our steps as the months wore on were baby steps - trying this, trying that, questioning our decisions both past and present, and wondering about the future.  And our immediate future was soon to take us to Wichita, Kansas.  Gary retired from the military in 1999, was offered a good job in Kansas, and so off we went to yet another unknown chapter of our lives.  That story next!

Aaron's Story - Part 1

I realize as I write these posts that there are many of you who really don't know much, or anything, about Aaron's history - his story.  I hope that I can briefly share a little of who Aaron is so that you will know him better.  I will begin by sharing that I remember so well laying in my bunk bed in my college dorm room and talking late into the night with my dear friend, Janet.  One topic that sometimes came up was how we would raise our children some day.  After all, at this point we were experts, you know!  I mean, we babysat and even aced our Child Development class!  Oh, little did we know.  But I do know that it never crossed my mind, crossed my lips, or even crossed my radar that I would one day be the mother of a child with special needs.  Permanent, life-long special needs. 

Gary and I had been married for five years when Aaron was born in November of 1984.  Gary was a military pilot and we lived in Colorado Springs, CO.  Aaron was born in the old WWII army hospital on Fort Carson.  That was an experience in itself!  Our baby Aaron was perfect!  I had the most beautiful baby of any of the babies born that night!  I had the most beautiful baby of any of the babies EVER born - ANYWHERE!  You new mothers know exactly what I mean.  He truly was a blond haired, blue-eyed doll who loved to talk; to explore; to eat; to wrap us around his little chubby fingers. 

Gary was getting ready to go to the field for several months just before Aaron turned 2 years old.  He and Aaron were in the den when I heard Gary calling me to come.  I thought something was wrong and hurried downstairs to find Aaron sitting on Gary's lap and Gary holding a magazine.  Gary told me to look and he proceeded to point to random letters in the magazine article's headline.  Aaron knew each letter and said it clearly!  We were astonished!  He wasn't even two yet.  He loved Wheel of Fortune and loved his magnet letters on the frig but we had no idea that he really knew his letters.  That became our new fun game with Aaron. 

We moved to Hanau, Germany and were there for three years and then to Mannheim, Germany for another three - with a 6 month stateside stay in between for fixed wing school for Gary.  One Sunday in Mannheim, when Aaron was in the first grade, he came down with a virus.  That afternoon as I stood with him in our kitchen and he threw up in the wastecan, he fell back into my arms and started having a Grand Mal seizure.  It was a terrifying experience for us.  I had never seen a seizure and didn't understand what was happening.  The ambulance came and off we went to the clinic, and then downtown to the German Kinderklinic, where he stayed for nearly a week.  He was diagnosed with Epilepsy there.  I remember coming home, finally, putting him into his own bed and then sitting at my desk crying out to God and crying my heart out for my Aaron.  It was the only time I allowed myself to have such a long crying spell.  I knew that it was time to move on and to trust Aaron into God's hands.  My trust in the God I knew never wavered, not because of any great person that I am but because of the great God that I know. 

We moved to Leavenworth, Kansas, in 1993.  The next year Aaron was weaned off the seizure drugs because he had been seizure free for two years.  Soon after that, though, he had another Grand Mal seizure and also began having other kinds of seizures as well.  He was put back on the meds and has been on them ever since.  As Aaron grew we noticed more and more odd behaviors but attributed everything to the Epilepsy or to the anti-seizure drugs.   He had tactile issues and couldn't stand things to be tight or scratchy against him.  He refused to wear jeans, for instance, and would tear tags out of his shirts if they rubbed against his neck.  He couldn't tolerate certain noises or loud voices.  He would sit for hours outside, breaking little sticks or leaves and putting the pieces into a container.  He would clap, very loudly, or make odd noises with his mouth.  He had a very hard time making or maintaining friendships.  Yet he taught himself cursive and was very sharp with math skills. 

Life was more and more frustrating for Aaron, and for us.  We thought that these behaviors would pass as he got more mature, but maturity never seemed to come and the behaviors only increased.  We then wondered if his seizures were the cause, or possibly all the anti-seizure drugs that he was taking.  No doctor ever mentioned any form of autism to us and that thought never entered our minds.  Then came a new duty assignment, a new home, a new life, and a new doctor.  And puberty!  I'll continue that part of Aaron's story later. 

Thursday, September 8, 2011

A NEW Wal-Mart?!

Like I said, Aaron LOVES Wal-Mart and was so excited yesterday to see that there's a new store, the Wal-Mart Market. He came bounding in the house and said, "Mom! Did you know there's a NEW Wal-Mart?!" And so I broke the news to him that I don't believe it has DVDs - or at least not many. He was crestfallen and said, "Well, that's not much of an important Wal-Mart for me." Whew! One less store he'll want to go to!  Maybe. 

Another Nightgown Gaffe

While we're on the subject of nightware, before I put it to bed, I'll tell you what Aaron did several months ago.  I had my nightgown on and was almost in bed when I heard him call me from his room.  I know better than not to check on him, so I walked down the hall and into his room.  I don't even remember what he wanted to tell me, but it only took a minute and we were done. 

The next day when he came home from his day group he was filling me in on what he had done that day.  He likes telling me about conversations, too, and so soon he said, "Mom, I told everyone that last night you came in my bedroom in your underwear."   WHAT????!!!!!!   And so I explained that what I wore was a normal, MODEST, nightgown - NOT underwear, for crying out loud.  He was totally unaffected.  "Oh", he said, "I thought it was your underwear."  And he went happily on his way as I stood there wondering what his staff and friends thought of Aaron's weird mother.  The next day I told him word for word what to say to clear it up and clear my name!  I can only hope he did.  And now I also hope that this will be the end of our bedtime nightgown stories.  And they lived happily ever after.

Wednesday, September 7, 2011

The Nightie

Aaron loves, loves, loves to shop............as long as he's getting to look at things that interest him.  That would primarily be DVDs and food.  Definitely not clothes.  Unless you count that one time that he and I went shopping at Wal-Mart - the time that's burned into my memory.  He had gone to the DVDs (of course) while I looked at a few things, and then I went by the movie section to get him so we could pick up a few groceries.  We proceeded to walk down the very large aisle, headed for the grocery section, and my mind was on what items I needed to look for.  I didn't even notice that Aaron was lagging behind. 

I remember that it was near Valentine's Day.  I remember that there seemed to be lots of people in this particular area.  I remember seeing the sexy nighties that hung next to the aisle, on my right.  And then I remember hearing Aaron, large and loud Aaron, very largely and loudly yell, "MOM!!!!"  I turned around and there he stood, quite a ways from me, holding up a very sexy tiger-print nightie.  And he very largely and loudly said, "MOM!!  YOU NEED THIS!!"  I was frozen - except for my face, which was becoming very red and hot.  I was wishing for a sink hole at that moment, right under my feet. 

Then I saw the delight on Aaron's face.  I mean, these nighties were very unusual for him and he's always been curious about the unusual.  He had absolutely no idea that this would embarrass me.  Aaron really thought that it would be great if I got one of those nighties with the cool tiger print.  I can imagine that most of the people observing this scene were hoping that I would NOT buy it, but who cares?  I just smiled at Aaron, told him that I did not need it and to hang it up, and proceeded to go cool myself off in the frozen aisle.   Besides, I liked the red one with feathers better.