Category: Uncategorized

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?

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!

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.

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! 

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!

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!

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!!

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!

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.