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!

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.

 

 

 

 

 

 

 

 

 

.

 

 

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!

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.