Some May Think IT Strange....But, I'm Ok With IT

There is no guide or book that tells one how to raise 2 boys diagnosed with Fragile X Syndrome.  We’ve been working at it for almost 22 years, so we’ve come a long way, but we still have some road to go.  We’ve done just the very best that we can, like any parent does.  Some of the decisions or actions that we’ve taken may seem strange to some, but, please allow me to explain.

The Webster’s Dictionary defines Strange as: 1. exciting curiosity or wonder; odd 2. estranged; alienated 3. being outside of one’s experience; unfamiliar; foreign 4. unaccustomed; inexperienced 5. reserved; aloof.

 One of my first memories of feeling unfamiliar with parenting came when Jake was just 2 years old.  At the daycare he attended they had cut, glued and taped (with help of course) a special project, we called the “Cow Hat”.  He was so proud to wear it home, and we were impressed that he even wore it on his head!  He proceeded to want to wear it during every activity, including while sitting on his spring horsey.  When it was time for bed, he tried to convince us that it must be worn during sleep, but fortunately, the “ba-ba” (bottle) won over and he succumbed to setting in on the dresser.  The next morning, he went directly to the “Cow Hat” and proceeded to put it on.  As soon as he did, the construction paper gave way and it tore.  The tears rolled down his cheeks as he protested.  I quickly got the scotch tape and repaired the precious “Cow Hat”. 

Jake (age 2) in "Cow Hat" 

After wearing it all day at daycare, Jake came home with the hat still on his head, but with obvious additional repairs done by others.  He was so proud and smiled from ear to ear.  After a few more days of this repeated process and repairs, I considered the idea of laminating it.  I had no idea how, but it was worth a try for one more day of joy. 

Jake even wore this dog-gone “Cow Hat” to the grocery store.  Others must have thought it strange to see such a cute little guy with this bandaged remnant of an art piece on his head! I was ok with it.  I knew that I was not ready to face the guaranteed grief that would result from his loss of “Cow Hat”.  I was a new parent!  I had no idea what I was doing!  I only knew that I was treading water until I had to face reality.  That day finally came, and it wasn’t as bad as I thought.  We told “Cow Hat” “bye-bye” and Jake (being 2) quickly moved on to the next thing.  Shows what I know.

Some years later, I remember a similar feeling of being outside of my experience when it came to taking the boys with me to the grocery store.  By this time, Jake was about 7 years old, and Joe was 5.  In order to have a successful trip at the grocery store, we needed the comfort and safety of having the boys firmly placed in the grocery cart.  Although this did not guarantee a successful trip, it did forego one uncertainty…..the thought of them NOT being in my controlled space.  As I huffed Jake into the cart, weighing in at about 50 pounds and me at a mere 120, I knew the dreaded day would eventually come when I would not be able to do it anymore.  The worry and anxiety I felt in anticipation of this moment was enough to keep me awake at night. 

Since I had begun using picture symbols by this point, I relied on this method to once again guide me through.  I made a one-page social story detailing what we would do.  First, I took Jake by himself to the store.  I pointed at the laminated sheet and he trusted me to make it happen.  Others might think it strange when they see me holding a laminated sheet, pointing to it, and talking to Jake like it’s the most exciting thing in the world at that moment.  But, I was ok with it.  Knowing that the alternative outcome would far outweigh it in the strange category.  We crossed the hurdle together and today Jake it my favorite grocery store helper.

I have done many strange or odd things over the years.  As anyone who has raised a son with Fragile X knows, they do tend to get a little bit attached to material things.  Some of these may include shoes or clothing.  My boys are no different.  I remember one t-shirt in particular that Jake, and then Joe, were attached to.  It was a short-sleeved lime green Gecko shirt with fluorescent colors.  I used to buy them at a store called Mervyn’s for a mere $3 and boy were they worth every cent!  In hindsight I was so glad that I went back shortly after I bought the first one to purchase 4 more!  Jake wore that shirt every single day until he finally outgrew them.  He wore them even when they were almost considered a half shirt!  They were washed and dried hundreds of times until we finally had to bypass the rag bag and go directly to the trash.  Some may have thought it strange when I lined up at the checkout register with 5 of the exact same t-shirt, or 2 pair of the exact same shoes.  I was ok with this.

Or the time that I actually called a store in New York to purchase an identical pair of shoes that Joe had become attached to.  “Of course I’ll be happy to pay extra for shipping”, I told the clerk.  She may have thought it strange that I would call all the way from Colorado to buy these shoes, but I was ok with it.  Knowing that the morning routine of getting dressed would not be interrupted one single day was peace enough for me.

We may be considered a bit alienated even when others see our RV taking up 6 parking spaces at the Annual Basketball Tournament.  Those who knew us prior to the year 2006 are ok with it. 

Jake started to play on the Unified (with “typical” partners) basketball team in 2005.  We decided that it was important for all of us as a family to attend both practices and games.  Joe did not bode well in this situation.  We worked with experts to slowly and methodically overcome the obstacles that were holding Joe back from participating as a member of our family. (Read blog dated June, 2011 http://www.mrsrogersfxneighborhood.blogspot.com/2011/06/importance-of-rocket.html for full story).  After 2 long years, Joe was finally able to be there with us and appear socially acceptable.  That following year, Joe WANTED to play, so we encouraged it.  At the end of the season there is a huge, loud, crowded basketball tournament where all of the teams come together in one spot, and each team plays up to 3 games in one day.  The first year Joe had not one, but 2 complete meltdowns.  It was just too much for him to do.  The 2^nd year, we made a plan to use a more structured visual schedule that included breaks in the car in between games.  Joe still struggled and the outcome was one meltdown.  At the age of 15 and weighing in at 120 pounds, this was not easy.

That summer, we purchased our first RV and the boys had had time to adjust to it and, in fact, love it for its familiar calm.  So, we thought, “why not utilize “Rocket” (the name of our RV) as a transition tool!”  The following spring the basketball tournament was held.  We drove the RV over to the school very early in order to secure the parking spaces needed to accommodate “Rocket”.  We waited in the RV until the first game was about to start, then we went in.  The entire day went off without a hitch.  Others may have found it strange, or even thought us arrogant, but I’m ok with it.  Knowing that we had come so far in allowing our son to be a participant in life, even if it meant bringing along a 17,000 pound RV, was well worth it.  Not giving up is something I cannot portray to others so they will understand.

Anyone that has known us or visited our home knows that Jake, especially, is a huge fan of the program “Mister Rogers Neighborhood”.  This love affair has been going on for as long as I can remember.  When Jake was little he would sit within 2 feet of the television and watch Fred Rogers.  His calm, rote demeanor and monotone voice made it easy to watch. 

This obsession, as some would call it, has continued throughout Jake’s life.  He is now almost 24 years old, and it is still a consistent high interest area for him.  His favorite t-shirts to wear to work now have picture of Mr. Rogers on them, and he even has what we call a “Shrine” in his bedroom.  This is the greatest show of respect in Jake’s mind, because to him Mr. Rogers IS life.  Jake spends almost every dollar he earns at work to buy DVDs of the “Mister Rogers Neighborhood” program, and he has quite a collection. 

 

The "Shrine" to Fred Rogers

 

We have not discouraged such an interest because; we too, have used the wisdom of Fred Rogers in our life.  For example, when our beloved dog died, we found it very comforting to watch the video on “Death of a Goldfish” and read some of his book on “Death and Dying”.  Both boys usually sit quietly when I read these words, and we do it often.  Why would anyone find it strange to embrace such a kind man whose words included things like;

 “Often when you think you’re at the end of something, you’re at the beginning of something else.”? 

These words have often helped me through a tough spot in my life. 

Or, one of my other favorite quotes;

“Part of the problem with the word 'disabilities' is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can't feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren't able to form close and strong relationships?

And people who cannot find fulfillment in their lives, or those

who have lost hope, who live in disappointment and bitterness

and find in life no joy, no love? These, it seems to me, are the real

disabilities.”

Or;

“I like you just the way you are.” 

Or;

“The best thing you can offer anyone is your honest self”. 

If being strange is the best I can offer……I’m ok with it.  It sure beats the

alternative.

 

I'm Dreaming of a White Christmas

Yesterday, I watched one of my all-time favorite Christmas movies; “White Christmas” with Bing Crosby.  As I watched, I found myself, as I often do, wishing I had been born in the early 50’s instead of the early 60’s.  Much of the simplicity of the early 50’s still existed in the early 60’s, so that gave me comfort.  I promised myself that I would not watch the news.  I couldn’t bear to hear the sorrow anymore. 

One of the many things that I loved about the movie is the clothing.  I didn’t grow up with such fancy outfits, but was proud to wear gently-worn hand-me-downs that my Grandmother purchased at the church bizarre.  No one ever knew the difference because most of my school friends wore the same.  No one stood out.  We were taught to wear the school clothes until we got home and then immediately change into play clothes.  This also helped in the laundry department, as we could often wear something twice without washing.  Something that is almost never done today.

We played outside from dawn to dusk on weekends and after chores on school days.  The summers were spent outside with friends and neighbors.  If the chores weren’t done, there was no chance of playing, which was quite embarrassing when your friends came to the front door.  We even followed directions when our parents weren’t home, knowing that eventually they would find out and have our hide.

We didn’t have a television until I was almost 13 years old.  We didn’t miss it either.  I remember when the Nixon Watergate incident happened; my Father would go to the neighbor’s house and get an update on the happenings.  We kids never knew what was going on except when we overheard our parents summing up the situation.  Vietnam was never talked about among us kids unless one of them had a brother or sister in the service.  We were kids and there was nothing about any of this that we needed to worry about.  Our job was to go to school and play.  Nothing else.

Even when we finally did get a small black and white television we weren’t allowed to watch it unless we asked permission.  I remember the very first program I watched; Alex Haley’s “Roots” mini-series.  That was something to see.  We weren’t allowed to watch television during dinner, so we rarely saw the news. 

Going to school was fun and hard work.  We particularly loved holiday breaks!  Not once do I remember being truly afraid at school.  Well, that is, unless you count the time that we were required to line up and get the small pox vaccination.  It made me cringe when I looked ahead to the front of the line and saw others almost in tears.  Dang, I didn’t want to do it!  Or, the times when we were required to practice emergency drills.  We really had no idea what we were supposed to be practicing for, but we followed directions and sat along the cinderblock wall in the hallways crouching and covering our heads.  It became routine.

Many of the boys I knew had shot guns either given to them by their Father or Grandfather before them.  They would talk about hunting geese or deer each year.  My own Father had a gun.  He showed it to us and definitively told us, “Now you know this is not a toy and you are not to touch it or play with it in any way.”  We knew what that meant.  The term “grounding” was not even a word when we were kids.  Parents went straight for the rear end for discipline.  Anyone who had a gun knew and practiced for its sole purpose.  Kids in those days didn’t have anything to imagine except what they dredged up in their own minds.  Well, there were comic books, but those weren’t real and we knew it. 

When my own husband went to buy his first gun, he was required by the government to have a background check.  He bought it legally and holds the permits as dictated by the law.  These weapons are locked up and kept safe and away from undue harm.  Is there really anything further that needs done in this case?  How could the government really MAKE him be more responsible?  For the sake of our own boys, I am happy he IS responsible.

Only during the 3^rd grade do I even remember having another student in my class that we thought had some kind of learning disability.  Oh, I am sure there were others, but it sure didn’t seem like it.  When I think about how little we all knew about this boy.  The teacher never made an effort to tell us what TO DO with him to help him feel more a part of the class, but only what NOT TO DO.  “Don’t tease him”, she would say.  “Leave him alone and let him sit in the back of the room,” was also commonplace.  He never came to school on days when we had a field trip, or something different to do.  So typical for the day.  This I do not miss.

Years later, I remember in the mid 1990’s a place called “Ridge Home” was closed.  I really didn’t know the depth of the situation, but I knew of this place since I was little.  Everyone knew what “Ridge Home” was.  It was a mental institution where long ago many individuals with some kind of disability or mental situation were dropped off and then lived.  Some of the stories were not so pleasant to hear, although one wondered if they were all true.  I can only imagine now how disruptive it must have been when it was closed and all of the residents were relocated.  Some had lived there their entire lives.  Where did they go?  We will probably never know. 

The idea that anyone with some kind of cognitive or mental deficiency would be somehow monitored by the government gives me much pause.  I, too, have 2 adult sons with cognitive and developmental disabilities.  How much should the government be in their private lives?  I do not know the answer.  For anyone else with some kind of known dangerous mental health issue; how much should we know and follow about them?  I think about how long and hard many parents worked before me to alleviate that discrimination.  How long it has taken to finally be able to ask others to be more tolerant of my own boys in the community.  I am happy for the present day on this one.

All of the awful, terribly and tragic news of late has propelled me back to April 20, 1999.  Although our family is not a direct victim, I remember the day so clearly in my mind.  I was in the car making my way to Joe’s elementary school to take cupcakes to share with his classmates for his birthday.  I got a frantic call from my brother-in-law who worked for the school district and was close to communications. He said Joe and Jake’s school was on lockdown and I probably needed to get over there and get them out.  He had heard that there was a shooting in progress at Columbine High School.  At the same moment that I took this call, I was a mere 3 blocks from Columbine.  Helicopters were everywhere and police cars were blaring their sirens all around me.  A driver in front of me was so focused on the activity that they rear-ended the car in front of them.  I swerved around them and continued to escape this scene.  I was focused solely on getting to the boys.

As we finally arrived home, I quickly turned on the news.  Almost immediately the tears began to roll down my face.  The sheer breadth and depth of the tragedy had not even come to light.  I was first and foremost happy that my own family was ok.  Then, the news that the Grandfather of a little girl in Joe’s class was one of the Teachers killed.  Our entire community was in shock over the gruesome loss of life; children’s lives.  How could we ever recover from such horror and sorrow?  No one knew.  For days, I sat on the couch and watched every single news flash and update on the situation.  We weren’t even directly involved.  We had no idea how this would affect life as we knew it going forward.  How could anything ever be worse?  We could never have imagined what the future would hold, especially 13 ½ years later. 

On Friday, I heard about the Sandy Hook incident on the radio as I was driving home from the grocery store.  I cannot even express in words what I felt, but those old scabbed over memories re-emerged.  I shut the radio off.  As Joe, Jake and their mentors returned home after their day, they began to talk about it.  More developments were still coming out.  They were obviously shaken.  They talked about how they were afraid to go to the mall, or movies or even to work.  How could we have come to this point?  Where another human being can illegally access guns and turn around and use them to obliterate another city or town?  None of these perpetrators would have had a red flag on a background check, so that method is not effective.  These were not legal gun owners using a weapon to macerate others.  Is fear the answer?

Years later, our own son, Joe, would attended High School at Columbine.  We could not have asked for a better school or better classmates.  A sense of community had replaced the overwhelming sadness.  Since then, we have spent literally years teaching our boys to be able to tolerate and acclimate in our community.  Do I want to turn around and take that away from them?  I think not.  Should I inform them to the point that they understand how dangerous life can be?  Even if they could understand I would not want them to have the kind of anxiety that this would incite. 

I am not a politician, and I do not know what the answer is. I do not know if taking away more rights or adding more legislation is the answer.  But, I do know that I am not unlike the rest of America.  I do not like what I see.  It causes me to doubt mankind.  It causes me to lose trust in our entire way of life.  It causes me to question my own beliefs. 

It is my wish that we take the time to grieve this loss of control over our world and to grieve the loss of another human being.  Precious lives.  To grieve the loss of more of our freedoms as we know them.  Freedoms that no one at the time that “White Christmas” was filmed ever imagined would be lost.  I long for the simple times and simple worry of days gone by…when all we wished for was a white Christmas.

Follow-Up: Thankful Thursday

Before you read this, it is highly recommended that you read the previous blog http://mrsrogersfxneighborhood.blogspot.com/2012/12/just-another-manic-monday.html.  Otherwise, this will not make sense!

Since Monday, we have had plenty of time to think and reflect on what happened.  Our nerves have calmed and some resolve has come as a result.  There has been, especially, an overwhelming feeling of contentment for all of us.

On Tuesday, Joe’s bus (CAR) arrived right on time.  Much to our surprise, the same driver was at the wheel.  I felt a little bit of panic.  She did not say anything about the previous day, and knowing that I had already said my peace to Executives with RTD, I did not feel the need to “unload” on the driver.  After all, I am not one to beat a person when they are down.  Joe got on the bus as excited as ever and they took off. 

The bus arrived at Ace as planned, and Daniel was there.  Normally, Joe would just stand up on his own, dart off the bus and go right into Ace with Daniel tailing behind.  Not today.  Today, Joe stayed seated and was unsure about what to do next.  This behavior tells me that there is a “hitch in the get’along”.  It must be resolved.  Daniel proceeded to get on the bus and encourage Joe to get off.  He did.  Joe went into work and had an awesome day!

This morning, Thursday, after posting my blog on the RTD website and sending it to adult programs within our school district, a new form of faith came to me.  My phone rang early this morning.  I answered, and a voice on the other end said, “Hi, this is the CAR driver.  I am the one that drove your boys and dropped Joe at the wrong place.  I am sorry.  I can only imagine how hard this was for you.”  At that very moment a great sense of peace came over me.  Sometimes all a person wants to hear is “I’m sorry.”  That’s it.  Nothing else. 

She continued, “I will be Joe’s driver, so I really want to get to know him and for him to feel comfortable riding.  It helped me a lot to know what I know now, and I am prepared to help.”  I was listening attentively.  “One thing I think would help is for me to pick him up 15 minutes ahead and then I can take him right to work without any other stops”, she said.  I liked this idea.  She continued, “I am hoping that when we get to Ace that he will then feel comfortable getting right off, and I can say, ‘Joe, it’s time to get off’”.  I said, “Well, one other thing you might say instead is, “Joe are you ready to get off?  He may pause for 2 secondsw until his brain has time to respond and then just get up and get off on his own!”  I thought that using the “ready-not-ready” method that we have worked hard to reinforce with Joe, might work better.  “Great!” she said.  We reaffirmed the plan and said our good-byes.

When I came back into the house after putting Joe on his bus, Chris said, “Well, all I can say is that it’s a good thing that you are here.  If this situation had just been up to me I would have gone the route of getting the driver fired and never letting Joe ride again.”  It reminded me about the Venus and Mars scenario.  I said, “But, what good would that have done Joe?”  He replied, “You are right, but it’s just instinctive to want to protect them—to have a finite outcome.”  I understood that.

Since Monday, I have had many comments from Mothers all over the world and the U.S.  Some stating their absolute fear and further desire to keep their kids at home and never take a chance on letting them experience independence.  Others just congratulating Chris and I on our calm demeanor.  Little do they know that the fear we felt was very real and palpable. 

With all of the terrible, horrific, fear-ridden things that are happening in our communities now it would be so easy to follow that fear and let it be our driver.  It wouldn’t be easy in the long run, but for today, it would be fabulous to think that we had full control over what our boys were doing every moment of every day.

When our boys were about 5 and 3 years old, we wrote down a life goal for them no knowing if we would be able to keep that unwritten promise to them.  We did it anyway with hope in our hearts.  That goal states that, “We want our boys to be as happy and as productive as they can possibly be.”  Going forward we tried to keep “our eye on the ball” and be true to that goal.  When we started to train them to ride the bus all those years ago, we felt strongly that we were doing the right thing in order to follow that premise…..relinquishing our control, but embracing trust.  We have learned that every single thing we teach takes oodles of planning, but that's not all.

Putting the boys on the bus this morning, entrusting their lives and their happiness to someone else, took something much more than trust….It took faith.  We DO have faith in others.  It also reaffirms my faith that there is good in all people if you give them a chance to show it. 

Just Another Manic Monday

Yesterday started out like any normal Monday in our house, but things quickly shifted to manic.  Let me start at the beginning….

Anyone who reads this blog, clearly knows that I have 2 sons.  Our oldest, Jake, is almost 24, and has been diagnosed with Fragile X Syndrome, OCD and Autism.  Our youngest son, Joe, is almost 22 and has been diagnosed with Fragile X Syndrome and Autism.  (For more information on what Fragile X Syndrome is and it's effects, please visit www.fragilex.org) This all occurred years ago, so we’ve had plenty of time to adjust and prepare.  Conceptually, anyway.  Both boys, as is typical with people affected by Fragile X Syndrome (FX), have very limited verbal communication skills.  Their vocabulary consists of about 50-100 words.  Most people might think this is a barrier to life, but we have learned, on the contrary!

About 5 years ago, both boys started to train in jobs.  We knew this would be the cornerstone to their future, so we started in High School.  As a little bit of time passed, we knew that a means of transportation would be very necessary.  So, one at a time, we started to train them very gradually, to ride a bus to and from work.  I won’t bore with the step-by-step details of how we did this; otherwise I would be compiling a novel!  Suffice it to say that it took much time and attention to detail, but we did it.  The method of transportation we decided on is called “Access-A-Ride” (AAR).  This is a point-to-point bus service that is provided by our mass transit system in our metro area.  It is solely used by individuals that need a little extra help getting from point A to point B.  In fact, individuals must qualify for this service in order to use it.  Seemed perfect!

About 4 years ago, Jake started to work at ARC Thrift store.  He has an awesome job coach or mentor named “Amanda”.  Four days a week, Jake rides the AAR to ARC and Amanda brings him home when he is finished for the day.  This plan has been mega-smooth for years.

About 4 years ago, Joe started to take AAR to Ace Hardware where he works and his job coach, "Daniel".  Daniel meets him at Ace Hardware 3 days a week.  No problem, right?  Wrong. 

About 6 months ago, the mass transit system informed us that Ace Hardware would no longer be on the AAR route.  They offered us an alternative, called “Call-and-Ride” (CAR).  Hmmmm….I thought.  The last day of AAR for Joe would be January 5, 2013.  Since I am not one to wait until the last minute, I decided that we should start riding CAR sooner rather than later.  So, I called CAR using the number provided to me.  I had to leave a message and wait for a call-back.  A few hours later, a nice lady called and explained how CAR worked.  She explained that when I dial the number given that it goes directly to the driver.  It can often be necessary to leave a message and wait for a call back since the drivers are driving.  It all seemed ok.  I  got Joe set up to start riding last week.  As it turns out, the CAR is free, whereas the AAR is $4.50 each way.  To makes things simpler (I thought) I decided to sign Jake up to ride the CAR, too.  Both work locations are within the coverage area, so why not?  It’s free!

 Joe rode 2 days last week without a hitch.  Drivers were super nice and Joe got to work.  On Monday (yesterday), Jake started to ride too, and as a bonus, one bus picked them both up at the same time.  As coincidence would have it, at the time the bus arrived to pick them up at 9:30 a.m., I had to take a phone call.  Chris calmly escorted the boys out to the bus.  He asked the driver if she knew where they were going, and she said, “Yes.”  They chatted for a bit with her admitting that she almost didn’t find our house and missed the turn.  Chris asked if she was going straight to one job site.  The driver replied, “I have one more pickup and then we will be on our way.”  As is the normal procedure, we texted Daniel and Amanda and let them know that the boys were on the bus.  We asked that they let us know when they get there since this was a new routine.

With the boys on their way, Chris and I got in the car to run errands, and hopefully, catch some lunch together.  It’s kind of a treat to have time to ourselves, but having the boys at work affords that luxury.  As we were driving, and after about 30 minutes (10 a.m. now), Daniel calls me.  Strange since he usually just texts me, I thought.  I answered.  Daniel says, “I happened to be in the back of the store when the bus came, and one of the ladies from the front of the store came to me and said that someone named “Jake” was here.”  He continues, “I ran up to the front and there was Jake.  I hurried to the front of the building to see if I could see the bus, and it was already gone.”  I told him to just stay there for a bit and see if the driver took Joe to ARC.  He said he would contact Amanda and let her know what was going on. 

Chris says, “The driver this morning seemed thoroughly confused.”  We remained pretty quiet the next few minutes, just waiting to see what would transpire.  Both boys were familiar with each other’s work place, and the people there knew them at least from a distance.  By now it was about 10:30 a.m. –60 minutes after they had left the house.  I called Amanda to see if Joe was there yet.  She said, “No.”  She continued, “I can see the bus about 1 block away over by an auto parts store, but they are not moving.”  I asked her to stay put and see if the bus moved toward the ARC.  Chris and I sat down to try to eat some lunch. I attempted to call the CAR number, but as usual, I had to leave a message.  I left a rather urgent message asking them to call me ASAP.  Thank goodness for “smart” phones because I was happy to have some technology at my fingertips. 

Years ago, when the boys started learning to ride the bus alone, we invested in something called a satellite tracker.  This little square box about the size of a phone battery provides live-time gps tracking.  Each of the boys’ wears them on their backpack by way of a little pouch that clips on via a caribiner clip.  I quickly went to the www.globaltrackingroup.com website to sign in and get the exact location of where Joe was.  It’s much easier to see the information on my laptop at home, I thought, but this was better than nothing.  Getting a little piece of mind at this point was allowing me to breathe in and out.  We felt like sitting ducks.

At the same time, I asked Chris to call Amanda and see what was happening.  Another 15 minutes had passed by now, and we were both short on breathe.  Amanda answered and replied, “The bus just went the opposite direction and turned out on the road away from ARC.”  Oh my God.  The tracking information showed that Joe was standing still at a nearby park.  This park was located closer to where Daniel and Jake where so I asked Amanda to stay put.  I called Daniel and asked him to load up Jake in his car and head toward the park to see if he could see the bus and get Joe off.  He did.  Several minutes passed.  Now, the time was about 11:00 a.m.—90 minutes since Joe had gotten on the bus.  I vaguely remember the waitress bringing my lunch, but I certainly don’t remember how it tasted.  Chris and I wolfed down our lunch and decided it was best if we were moving.

We got back in the car and decided to head toward the park.  We were still at least 15 minutes away.  Right about that time, Amanda called and said, “Hold on!  The Manager of ARC (the lovely and kind Edie) just got a call from the Tuesday Morning store down the way.  We are going to investigate.”  Chris was driving like a mad man, reaching speeds of about 85 mph on the freeway.  Thankfully, it was the middle of the day so there was literally no traffic.  Although, I doubted that any policeman would believe our story should we get stopped.  I hardly believed it myself!  I was kind of sorry that I even ate that lunch now.  It sat like a heavy rock in my stomach.

As we took the exit off of the freeway, Amanda called.  They had found Joe.  He had been dropped off, or gotten off (we are not sure) at another store altogether.  The lady in the front of Tuesday Morning had the wherewithal to figure out that Joe had very limited speech and obviously was not shopping at the store.  Since ARC is in the vicinity, she put 2 and 2 together, and Thank The Lord, it all worked out ok.  I asked Amanda if Joe was ok.  She said, “He’s chewing his chewy tube pretty hard, but he seems fine.”  I took a deep breathe, thankful that I had attached a piece of chewy tube to his lanyard.  We decided that under the circumstances, and the fact that it was now 11:15 a.m. (1 hour and 45 minutes after pick up at home) that the 4 of them should pow-wow and skip work tasks for the day.  She agreed.  I hung up and immediately got Daniel on the phone to give him the news and plan details.  Chris and I headed for home.  The last 5 miles was pretty quiet, with both of us holding back tears.

My first call was to the CAR.  As usual, no answer, just a message.  I hung up and called the transit district directly.  I asked to be put through to a Supervisor immediately.  A professional lady answered and asked if I wanted to file a formal complaint.  I stated that, “This is far beyond a complaint.  I need to speak to someone in authority to report an emergency situation.”  I got through to a very nice lady who listened and documented my words.  I still did not have a call back from CAR or the driver.  The Supervisor stated that someone would be getting back to me within the next few hours.

In the meantime, Jake, Amanda, Daniel and Joe returned home.  Everyone was a little exhausted but no worse for the wear.  We talked about what went right and what went wrong.  We discussed ways that some of the situation could be avoided.  About that time, my phone rang. 

The gentleman on the line said that he had 3 other executives from mass transit on the phone with us.  We talked for quite a while and came up with a plan.  They admitted that CAR may not be the best service for our needs.  We talked about options and made notes.  After I hung up, I was actually very grateful that they had taken such an interest in the situation of my sons, my very special sons.  They had said that they were very concerned about the complaint, and as Fathers themselves, they could not imagine what we had been through.  They knew the worry we had experienced. 

Before Daniel and Amanda went home, we thanked them greatly for all of their effort and assistance.  We felt thankful to have such Angels in our boys’ lives.  We know what this means.  We know the value of it.

The next call I made was to Tuesday Morning.  A lady answered the line and I started to ask if she was the one that met Joe.  She said, “Yes.”  I thanked her for her intuition and her kindness.  I asked if she had children.  She said, “Yes.”  She told me, “When he entered the store I asked if I could help him.  He just kept saying ‘bus, bus, bus’.  I told him that the bus didn’t come here.  He pointed toward ARC.  I somehow realized that he wasn’t here to shop.  I thought about it and suspected that he might work around here and then I thought of ARC so I called.”  She said she could only imagine how I must feel.  I told her that now I feel as if I always have.  I know that there are Angels in our community that will help my boys when they need it.  She was content and so was I.

Later in the evening, we told each of the boys how proud we were of them, and how proud we were that they held it all together.  We know they were scared and confused.  I would be!!!  This experience has made us all grow.  Chris and I went to bed knowing that it all turned out ok.  The anger had faded and pride and thankfulness replaced the fear. 

This morning when we awoke, we both talked about how amazed we still are that Joe was able to go into an unfamiliar place and help someone understand what he needed even with very limited verbal skills.  We were still proud of how there were no acts of aggression, only bravery. How Jake was able to handle all of the adversity and disruption of his schedule.   All in all I think we realize how big our boys are and how much they’ve grown.  Also, how they continue to teach US.  For this, we are truly grateful.