When We Lose the Exceptional Worker

There are times when life gives me challenges with Sam and Autism where I really wonder how I put my feet in front of the other.  It is not Sam himself but the situations that Autism presents that can make life feel unbearable.  The thing that grabbed and chocked me until I felt I couldn't stand it anymore was losing one of our exceptional workers.  There are people that come in and out of our lives and sometimes it happens so fast that all you are left is to say, "Don't let the door hit your behind on the way out!"  Being a single and economically challenged Mom, Medicaid doesn't really leave you with much choice on the care that your child receives when it comes to Community Rehabilitation Services.  In addition, I have no say in who is allowed to work with Sam and the duration of time that they will be with us.

Sam was in the care of a fine gentleman until the agency pulled the plug on the program.  Sam on paper looks like a very challenging child and we were having a difficult time having someone pick him up.  I had the Developmental Disability Service Organization involved and my days were filled with emails and phone calls to countless people trying to find help. Years before I had fought hard for those six hours a week that I had to fill and I was not about to lose them.

An agency finally picked up Sam and I will never forget when the over 6 foot guy walked into our door and said, "Hi! My name is...."  My first thought was "Wow, this guy is cool."  After the introductions all three of us got down to work.

When I think of our worker I think of Sam's photography because this is where a large chunk of time was spent.  Every Wednesday and Friday he would arrive and we would read the comments left on Sam's facebook page, Snapshots by Sam Maloney.  It was this guy that sat with Sam and me putting frames together for Sam's first show.  It was this guy's suggestion that I should put a "Thank You" on the wall for Lumiere Photo that helped with the printing and matting of Sam's work..  Brilliant I say!  Brilliant!  I would have never thought of it.  Our worker made our show better with that suggestion. The one thing that I admired so much was his business sense and suggestions that he would think of as minimal were changing the way I thought of Sam and his photography.

As the weeks went by I would watch and listen on how he worked with Sam. He would give Sam choices and left the decision to Sam on how he might better behave in public.  It was more informative than punitive and I knew that Sam never felt less than as he was thinking about the choices put in front of him.  This is an area that I know I fall short when frustration leaves me speechless.  It was equally as powerful when Sam would have meltdowns over reading his comments and we would sit and wait for Sam to collect himself as the worker explained that these people were supporting Sam and it was Sam that needed to give back.  It was very powerful stuff for sure. There are times when I feel what I call the "Pageant Mom Syndrome" and nobody wants their Mom telling them what to do.  Having someone else giving Sam suggestions is very helpful.

This individual's time with us was cut way too short. It just was not time for him to go because I know there was more to do leaving me with the feeling that we had just gotten started. When I found out that our worker  would be leaving us to work with the more challenging clients I was angry.  I made that very clear to his supervisor.  It takes me days to process difficult information and I am left with sadness.  I have never had a worker make such a deep impression.  To watch him with Sam was nothing short of magical.  I have never seen anything like it and I would be the luckiest of individuals if I had the opportunity to witness it again.

I am going to end this little story about a time that I feel the worker will most remember Sam.  Recently the three of us had gone out for Sam to take some pictures.  Our worker told me and Sam that he looks at the world differently since meeting Sam.  He really didn't think of himself as someone who could take a good picture and was thrilled when I made the suggestion that he find some places for Sam to get a special shot.  We ended up at this ice rink where there was a bridge over a little stream.  He lifted Sam up onto the ledge of the bridge and held him tight so he wouldn't fall.  (No worries, the bridge was surrounded by a fence and it was more of a protection that Sam wouldn't fall backwards.) He was starting to give Sam some direction and said, "You know what, take the picture anyway you want buddy."  I had to laugh because that is often what I say.

It was so much fun to watch a guy and a boy throwing rocks into the stream and then taking a picture.

Kudos for finding a special place to take photos even though it was behind an ice rink.

I cried a lot of tears the day I found out that our time together will be ending. The one thing that really hit me was two phone calls that I received after I found out the news.  One was from a woman that always calls me when she is going someplace fun with her kids asking me if Sam and I want to join them.  The other was from a very dear friend with some really good news for Sam.  Life marches on and I am on a ride with Sam to be enjoyed with the many faces that we are privileged to be around.  I also leave with the knowledge that if I ever need anything, the worker is only a phone call away.

*If you are reading this and say, "Hey, I was a worker with Sam".  I would say that I am 100% positive that since you are taking the time to read up on Sam, you were a very positive influence on us.


*You can find Sam's photos on his facebook page Snapshots by Sam Maloney.

*The background of this blog was a picture that Sam took while looking for Salmon.

Our Special Outings

I belong to a very cool Meetup group called Nature Photography.  Meetups is a nationwide program where people do just exactly that, meetup.  I was turned on to Meetups from a very good friend who told me to go online and research Rochester Meetup.  The amount of groups is aweome and anyone can find something that fits their interests.  I have yet to "meetup" with any of these people but I do get great ideas of where to take Sam from the emails that they send me. 

I don't think I could find all of these interesting places without the help from outside resources.  It is amazing that you can live your life in one place and miss all of the beauty that surrounds us.  This is just one more gift that Sam has given me with his photography.  I don't know if Sam truly understand the beauty that comes in through all of his senses but I can say that his visual sense of the world is profound.

It is interesting to me that a person with Autism will walk into a room and see everything.  I can't imagine walking into a room and see walls, pictures, knick knacks, pillows, chairs, tv, stereo, books, games, carpet, pieces of thread, pieces of paper, cracks in paint, blinds, chords from the blinds, curtains, computers and the list goes on.  This is what Sam's sees in our living room and he filters out nothing.  He is bombarded with information all the time.  The beauty of all of this information is seen in his photographs.  There are lines of light, shadows, shapes and beautiful colors.  I am there for every picture that he takes and I don't see what he sees.  How I think he should take the picture is totally different on how he wants to take it and his way is better all the time. 

This is what I do for an outing.  I have kept all of the emails from the Meetup emails in a folder that inform everyone on where they are going to meet.  I look it up and see how long it will take to get there and map out what the day will look like with cost of food, gas ect.  I also use the photography as a social goal and I often call Sam's friend to see if he can come with us.  His name is Kendall and Sam has a much better time with someone to hang out with.  Kendall uses Mina's camera because he doesn't have one of his own.  I used to take Mina with me to scout the area first but I have since stopped that ritual because we are all so very busy.  I just take the plunge and figure out the routes and Kendall, Sam and I discover all of these places together.

This is Chimney Bluffs near Sodus, NY.  Kendall didn't come with us that day.  I just love how the fall leaves frame the photo.

Sam and I went to Corbett's Glen which is in Penfield near our home in Greece.  I remember that day because it was jut Sam and me and I was the one carrying the camera and tripod while hiking on the trails.  I remember taking a photography class and the teacher said that tripods were like dogs, everyone wants to talk with you.  I found out that day that this was very true.  That day was filled with a lot of interesting conversations and I had a blast.  Sam had a good time playing in the stream while taking breaks from taking his wonderful photos.

It is diffcult to choose my favorite from that day so I will pick Mina's .  This is the photo that she wants to hang in her dorm room when she goes to college in the fall.

There are days when I am so tired but as Sam's very dear friend and mentor Nick Kelsh says, "You are only as good as your last photograph."  On this day I took Kendall and another young man, Marcus, with us and unfortunately I didn't have a camera for Marcus but he was a good sport.  Marcus and Kendall live in the inner city and they don't have a chance to travel much out of Rochester so Marcus was psyched for our short trip.  We went to Buttermilk Falls in LeRoy, NY.  I had to call Kendall's Mom, while on the road, for her to look it up online to help us find it.  All three of us ended up on this guy's land and he was a trooper as he explained where we could park on his land to walk to the falls. The kids had a blast skipping rocks in the stream.

This is a photo that Sam edited with Sarah who is his Music Therapist from Hochstein.   This is one of those photos that for some reason speaks to me. This photo is one of my all time favorites. If you look closely, you can see the falls in the background.

This is a picture I took of Kendall.

The three boys hanging together.

Our next trip was to Taughannock Falls that is located in Ulysses, NY.  I was feeling adventurous and decided to make the two hour trip with the two boys. On a Saturday morning I picked up Kendall and headed straight to the gas station and the boys felt like it was Christmas as I bought them snacks after filling up the car.

Once on the road, I realized that I didn't have the directions so I called Kendall's Mom having the toughest time trying to spell a rediculous long name that sounds like tonic with a ka in the middle of it.  The only thing I remembered was Ulysses and Rt. 89 and that is what I put into the GPS. After the snacks were gone the car was filled with "Are we there yet?" and I put the boys to the task of finding an ice cream stand.  Just when Sam couldn't take it anymore we found the tell tale sign of the big wooden ice cream cone.  The ice cream was a wonderful treat for that hot day.

Luck would have it that we were only a few minutes away from our destination and as we approached I heard beautiful sounds of "Woo Hoo!" in the back as we pulled in the parking lot with Sam having the last word of "Finally!"

Our first stop was looking down on the falls.  It was pretty and everything but the boys were more interested in the people that looked like ants down below.  We got back into the car to drive downhill in hopes of finding the trail. We paid for parking and headed towards all the other folks that seemed to know where they were going.  All I can say is that the rest of the day was incredible.

As a result of not scouting the place with Mina, I had no idea how long we would be on the trail.  I promised the boys that they could walk in the stream with the rest of the tourists on the way back to the car.  We finally made it and Sam's picture will not do the falls justice.

I thought this was a cool picture.

The boys skipping rocks.

As promised, the boys walked back to the car in the stream.

*You can find Sam's photos on his facebook page Snapshots by Sam Maloney.

*The background of this blog was a picture that Sam took while looking for Salmon.