Saturday, June 16, 2012

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.



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