Tuesday, December 11, 2012

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.


  1. WOW! That's all I can say right now. WOW!

  2. Oh my gosh. I would have been freaking out! Way to go, Joe and Jake on keeping your cool. Thank God that there are still good people in this world.