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!

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. 

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.

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. 

Lessons From the Battered Plants

On Thursday evening we stood helplessly at our windows and watched as the hail fell and the wind blew ferociously. The hail wasn’t huge but was relentless and seemed to go on forever. When the storm was over I stepped outside and felt very disheartened at what I saw – leaves that had blown off of trees and plants were plastered everywhere; branches were snapped and smaller twigs were scattered all around; flowers were shredded; newly purchased hanging baskets were twisted and broken; our vegetable garden partly flattened and mangled. I didn’t even want to deal with it after weeks of planting, nurturing, and then beginning to see the fruits of our labor that we noticed even as we walked around the yard and garden minutes before the storm started.

Today I stepped out on the back patio, gathered the hanging baskets together, and started trimming the dying and drooping limbs. I then turned to the two flower beds in the back to do the same there. And I noticed something amazing. In the midst of the damage there was new growth. There among the pock-marked leaves and shredded blooms were new blooms waiting to open, new leaves unfurling, and bees buzzing about. Life!! And you know why? Because these plants were not uprooted. Their root systems were intact, receiving nourishment from underneath the ground as well as stability to remain standing. Sure, they bear the marks of the storm, and some look very tattered and worn. But there is growth; there is an anchor in the soil; there is hope.

How many times I’ve been battered by the storms of life! All of us have endured the sting of trials in so many areas of our lives. Many trials are prolonged and seem to never end. I’ve felt beaten, defeated, discouraged, scared, tired. But through it all I know in Whom I have believed. My roots are firm in the God Whom I trust. Jeremiah said it very well in Jeremiah 17:7-8: “Blessed is the man who trusts in the Lord and whose trust is in the Lord. For he will be like a tree planted by the water, that extends its roots by a stream and will not fear when the heat comes; But its leaves will be green, and it will not be anxious in a year of drought nor cease to yield fruit.” I may bear the marks of the sufferings of this life but as I remain rooted in God my life can continue to grow, to prosper spiritually, to yield the peacable fruit of righeousness, to have peace and usefulness. I have hope as I anchor my roots in Christ – “This hope we have as an anchor of the soul, a hope both sure and stedfast…..” Hebrews 6:19.

And so I pray that I will bear the marks of my trials and hardships to the glory of God. I pray that I will continue to grow, to bloom, and to bear fruit despite the scars that may mar my leaves. I pray that through the heat and fierceness of the storms to come I will remain rooted in the Lord with no fear or worry, being fed by Him, and looking forward to the sure and stedfast hope that He provides!