Making a Difference: Hochstein's Music Therapy and Expressive Arts Program

It always gives me great pleasure to tell people how they have made a difference in my life.  However today, I would like to talk about Hochstein's Music Therapy Department and Expressive Arts Program and how they have made a huge difference in Sam's life.

Sam's Therapists, Joe and Sarah.

Sam’s early years were filled with chaos as sights, sounds, touches and smells bombarded Sam’s body.  He dealt with his confusion by running, hitting and screaming.  I was often his safe spot while being used as a venting vehicle so Sam could communicate his needs in inappropriate ways.  I was told that he would most likely live out of the home in a residential setting.  I had many interventions during that time and I believe that the people that sent me to Hochstein were the wonderful people of the Crisis Intervention Program at Strong Hospital.

Sam started attending Music Therapy at Hochstein when he was around five years old.  I can still hear his cries as we drove the half hour to his lesson.  I would carry him into the school where he would work with his first therapist, Wade Richards.  Wade would have Sam play on the drums until he felt like he was able to cope.  It was here that I learned about “Sensory Needs” and Sam’s need for deep muscle movement to regulate his emotions.  It was also Wade that helped me fight for a sensory diet in Sam’s school.

After time, Sam made huge improvements where he was better able to cope.  Wade Richards was the Chair of the Music Therapy Department and he took the tough cases.  It was Wade that transferred Sam to Joe Kostecki.  I will never forget the day when I first shook hands with Joe to introduce myself and Sam.

This is Joe and Sam.

I would talk to Joe about how I discovered Temple Grandin and her work.  It was Ms. Grandin’s words that educated me about what Autism was.  Her Mantra is to find the talent and the mentors for our loved ones with Autism.  As I read her many insightful books I was reminded of Sam’s fascination with cameras.  I had a plan to buy Sam a camera and take him on nature walks to take pictures.  I would share with Joe how I would  load the photos onto facebook, have people comment and have Sam read the comments to improve his reading,  I asked Joe to teach Sam how to hold the camera.  It was to both of us a great surprise when Sam started taking wonderful photos.

This was Sam's first picture.

Once I saw Sam’s photos I knew that I needed someone to work with him.   I walked the pavement to find and Expressive Arts Program for Sam.  I was told that Sam had to be 21 to qualify and I refused to wait that long.  Joe Kostecki asked the newly hired Chair, Maria Battista-Hancock, if Sam could be part of the Expressive Arts Program at Hochstein.  Maria said yes.

Maria and Sam playing the Didgeridoo.

Sam works every Monday with Joe Kostecki and they work on regulating his sensory system, developing cognitive skills such as attention and executive functions and using music to improve communication skills.  Joe and Sam often work with his photos and produce music on how Sam perceives how the photos would sound.  I love this because individuals with Autism have a difficult time thinking abstractly and Sam is taking a concrete picture and abstaractly thinks about his perception of the photos. 

Sam now works with Sarah Russell with his photography.  I am amazed on Sarah’s ability to transform from a Music Therapist to an Expressive Arts Therapist.  Sam is the first kid to be part of an Expressive Arts Program at Hochstein and Sarah and Sam have grown together and have made some amazing pieces of photography. 

This is one of their most famous pieces.  It is titled, "Many Green Leaves".

Sam works with Sarah every Tuesday in the high tech computer lab putting his photos in slide shows with “Garage Band” music that Sam composed playing in the background.  Sam works on editing skills in Google Picasa where he learns about such terms as compositions and saturation.  I am able to look at pictures that Sam and Sarah have taken together of the performance hall and feel giddy as Sam excitedly shows me pictures that they took of each other dancing across the shiny wood floor that is the performance stage.  Sarah tells me that Sam now mostly works by himself as he tells Sarah, "I got it".  Sam's independence makes me happy.

This is the picture that Sam took of Sarah.

When Sam first started working at Hochstein I had a fascination with the performance hall.  I though that the performance hall was strictly off limits.  I would sneak in and stand there and wonder what it was like when the hall was a church that housed the Underground Railroad.  I can only imagine what it was like during the memorial services of Frederick Douglas and Susan B. Anthony.  I look at the only 2 standing original set of pews and wonder who sat there. 

The school itself was named after David Hochstein.  David was a violin prodigy and was born to Russian immigrants in Rochester.  He was a composer and played in prestigious places including Carnegie Hall.  David decided to join the army and was killed only 30 days before the Armistice was signed to end the war.  David has been said to be "one of the finest violinists America has every produced".  David was greatly missed and in 1920 it was his patrons and friends who established the David Hochstein Memorial Music School.

Rochester is super rich with wonderful stories formed in history.  Hochstein is one of its most famous of places.  I feel privileged as I sit watching all the different artists walking past me and wonder if they are going to be the future’s superstars.  I chuckle as Sam walks into Hochstein standing out with his camera and tripod which is his instrument that makes beautiful music for our eyes. Everybody at Hochstein has their unique story to tell.  I am happy that I got to tell ours.

Twice a week we walk into these doors.

Different views of the stained glass windows.

Some different views of the stage.

Curves and lines at Hochstein

The piano

Last but not least, the pictures that Sam edited with Sarah.

I salute the staff of Hochstein for teaching Sam that he is a vital part of Society.  I have reached my goal of teaching Sam that he is important.

This is Sam's first self portrait that he took of himself with Sarah in one of Hochstein's dance studios.

*As of today, Sam is reading at a second grade level.  I call this progress.  It is only going to get better.

*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.

 

Making a Difference: Nick Kelsh

I started this blog on November 14, 2011.  I had visions on letting people know how important they have become to me and Sam.  My first post was Making a Difference:  Renee Hall.  I talked about how I met Renee from an Autism Event.  I was so excited because her prices were reasonable and I could afford to get Mina's Senior Photos.  The day of the photo shoot I could never have imagined how my life, and Sam's, would change for the better.

Renee said two things to me that changed Sam's life.  One was, "You need to have Sam take a picture looking up into a tree."  The other thing she said was, "You need to put Sam's photos on Nick Kelsh's facebook page How to Photograph Your Baby."

That same day I put Sam's photos that he took of Mina with Renee on the facebook page How to Photograph Your Baby.

Here is how it works.  You can upload three photos a day of anything.  Nick picks the photos to use in his Nick Kelsh Radio Picture Show that he produces every Monday, Wednesday and Friday.  It is nothing short of amazing how he does this.

I posted three of Sam's photos everyday and was thrilled on how many people commented on his photos.  It was helpful because I started this project over one year ago for people on my facebook page to comment on his photos so Sam could practice his reading.  Because of this wonderful page I had more people to help with Sam becoming a better reader.

I can't recall when I posted this photo on How to Photograph Your Baby.  This was the photo that Renee Hall told me to have Sam take.  I do recall the day that he took the photo.  I had seen a tree across the way from our local bank and I pulled over for Sam to take the picture.  Sam was getting frustrated because it was difficult for him to hold the camera while looking up into the tree.  Sometimes when Sam gets frustrated I say, "Ok Sam, take just three photos."  This was Sam's third photo that he took of the tree. 

On Monday October 17th of last year I was looking through the facebook newsfeed and I received a message from Renee Hall.  She told me about the Nick Kelsh Radio Picture Show.  I had no idea that there was such a thing.  I clicked on the video and Nick was talking about the photo.  He said that the photo was from me.  I reposted the photo explaining that the photo was taken by Sam and how Sam was diagnosed with Autism when he was 3 years old.

On Wednesday October 19th I received another message from Renee telling me that Sam was featured again on the Nick Kelsh Radio Picture Show.  I clicked on the video and I started hearing Nick's voice. 

This is what he had to say about Sam's photo.

Debra posted this photograph a while back and I put it in the last radio show and since that time she has reposted the photograph and said that her son Sam, who was diagnosed with Autism 8 years ago, shot this photograph.  Sam is really into photography and I would love to see more of Sam's work.  We could always use some of Sam's work on the site.  We love using pictures that kids have taken and this one is especially beautiful, beautiful fall colors.  Thank you for that Sam, fantastic.

I was sitting at my desk and I cried.  I couldn't believe it.  My son, Sam, the kid who works so hard with his challenges was recognized by a guy who is an author and who has also been on national television.  I then put my arms straight into the air and shouted, "Touchdown!"  because I was so happy. 

I have to say that once I heard the Nick Kelsh Radio Picture Show I was hooked.  My kitchen is filled with Nick's voice every time he posts the show.  I often sit with Sam and watch the show and listen while Nick teaches us all how to take better photos.

During Christmas I posted this photo.  This is a photo that Sam worked on with Sarah, his Music Therapist.  It is a picture of the Liberty Pole that is decorated with white lights during the Christmas Season.

Nick used this photo to make Sam a Christmas Card.

This was his message to Sam.

For Sam, I love that you've been getting experimental! Isn't picture editing ama...zing?! Great picture of the Christmas light tower. Fantastic.!

I thought you'd like to see a picture I took of myself when I was just a bit older than you are now. I had to do this in the darkroom which you would have loved! (How about those cool glasses?!) Anyway, this is my little Christmas card to you and your family. Thanks for all of your hard work this year and Merry Christmas to you and your wonderful mom! Everyone on this site is so excited to see what you have in store for us next year! I can't wait to get you on the new website that's driving me crazy. Keep up the fantastic work!

Nick's website is now up and running at How to Photograph Your Life.  I have to say that the new website is, using Nick's words, "Fantastic!"

One of the photos I posted was a picture of a butterfly that Sam took and the Butterfly Exhibit at the Strong National Museum of Play.

It made the cover of the Nick Kelsh Radio Picture Show.  This is what Nick had to say.

Sam has been going to town at the Butterfly Museum.  I mean, look at this, please, please look at this photograph.  Look at the composition on this thing. Someone made a comment, "Wow, that boy has got some eyes."  That reminded me of one of the most famous things ever written about photography.  This is completely legitimate, now we are getting into the culture period of the program here.  I am going to read to you, with a little rewrite, an introduction to the book, "The Americans" by Robert Frank.  One of the most famous photo books ever done. The Introduction was written by Jack Kerouac, back in the late 50's.  He wrote to Robert Frank, I paraphrase because this one is for Sam. 

Anybody don't like this picture don't like poetry see.  Anybody don't like poetry go home see television shots of big hatted cowboys being powerated by kind horses. Sam, young, unobtrusive, nice and with that little camera that he raises and snaps with one hand, he sucks poetry right out of America into his camera taking rank among the great poets of the world.  To Sam I now give this message, you got eyes.

Nick is special to me because he gets how difficult Autism can be.  This project of photography is not easy.  The Autism gets in the way of Sam truly enjoying himself.  Don't get me wrong, Sam loves photography but sometimes he gets extremely frustrated because something isn't working out the way he thinks it should go.  I am constantly asking him if he wants to continue with photography and he always says yes.

A few weeks ago a kind hearted woman posted on Sam's facebook page about how NPR was accepting submissions from young photographers.  I posted four of Sam's photos and one was accepted and posted on the NPR Website. 

The photo of the tree was accepted and I was blown away how quickly people found out about it.  I am still a little dazed.  This is what Nick did for Sam.

And then Nick wrote a special message for Sam.

ttp://blog.howtophotographyourlife.com/blog/a-note-to-sam-maloney/

Nick talks about winning awards and staying humble.  He writes,

Sam. Just remember you’re only as good as your last photograph. You can’t hang your hat on this NPR photograph forever. It’s really wonderful and fun and no one is more proud of you than me (okay, maybe your mom), but with your new found fame comes responsibility to yourself. You need to keep shooting beautiful photographs if for no other reason than you and the entire world know that you can, and the world will be a better place if you do.

This message is also for me.  I am so proud of Sam and we don't make a big deal on the photography.  Autism is a social disability.  Autism robs Sam of friendships because he feels like a stranger in this world.  Sam is building friendships with his camera.  What Sam is learning is that people care about him and that is the biggest gift a Mom could ever ask for.  It brings me to tears when I think of the people that have come forward for Sam.

I am proud to say that Sam is a family member of How to Photograph Your Baby.  I am even prouder to say that Nick and his family, are part of ours.

Thank you Nick.  You are Sam's champion.

Sincerely,
Debra Pierce Bellare
(Sam's Mom)

*As of today, Sam is reading at a second grade level.  I call this progress.  It is only going to get better.

*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.



The Story of Placing a Camera in Sam's Hands.

I haven't posted in awhile because I have been saving up my energy to tell the story of putting a camera in Sam's hands.  It is a story that has a lot of twists and turns and I hope that people will stay until the end.  It might read as a sad story but it really isn't sad at all.  I think of where I am today compared to where I started and I am a happy individual with great hopes for the future.  I don't think I could ask for anything more.

Sam was born on May 17, 2000.  I was in an abusive relationship with his father and I fled to an abuse shelter.  I was eight months pregnant when Mina and I walked through the doors of the Alternatives for Battered Woman's shelter.  Two weeks later I went into labor.  Mina and I together walked through those shelter doors again with Sam after he was born.  Two weeks later they kicked me out.  The shelter was upset with me because I refused to live in the city of Rochester.  Mina was in Kindergarten and there was no way that she would go to the Rochester City School District.  The apartment that I wanted was here in Greece and there was some wait time.  Mina and I moved in with my Mom and Dad two hours away from Rochester to wait for an opening.

During this time I applied for custody of Sam.  Sam's Dad also applied for custody on the grounds I was Mentally Ill.  I sat in the courthouse listening to the lawyer talk about how dangerous it was for a mom with a Mental Illness to have custody of a child. I had to go through psychological testing with a deranged man who told the lawyer that I was a horrible Mom but he couldn't find anything wrong with me.  The first day of court was the first day I started writing my book and I was hell bent that I was going to live the rest of my days helping parents with psychiatric disabilities keep custody of their kids.  The thing that gets me about the whole dang thing is that nobody wanted to listen that I had a daughter at home that excelled and that I was abused.  Sam's Dad and I have joint custody and I have Primary Residence.

I drove every other day back and forth to court, four hours a day four times a week, from my parent's house.  I had to drive an extra day on Saturdays for Sam's Dad to have visitation.  I had a little baby in the back and I had to leave Mina with my parents.  I did this for three months.  It was a happy day for me when we moved into our apartment in Greece until I made the mistake of introducing myself to the Moms.  Mina made friends with these Mom's kids and the Moms decided that I didn't belong and they wanted me out.  I was Mom Bullied for four straight years.  They screamed at me, they threatened to hurt me, they called the cops on Sam when he was 4 years old.  These moms taught there little kids how to beat on Sam.  They used to drop dirty dipers under my window and then call management. That is just a drop in a bucket compared to what else they did to me.

With all this confusion I noticed that something was up with Sam when he was six months old.  I refuse to say that something was wrong with him because that is not how I chose to look at the situation.  Sam screamed continuously and he never slept.  My one friend that I did have always said that Sam didn't make eye contact.  There were many many things that showed me that Sam was different from Mina. 

With all these signs that Sam was different, I went to Sam's doctor.  The doctor told me that it was my fault because I had a mental illness.  Any intelligent person would say, "Well silly, go to a different Doctor."  I was exhausted from little sleep and I didn't know where to go.  I finally got Sam diagnosed when he was 3.  The diagnosis was Autism. Our apartment had a balcony and Mina, Sam and I would hang out there.  One day we were having a tea party and Sam took a beautiful picture of Mina and me when he was five.  She had it developed and put it into a locket and gave it to me for Mother's Day.  The other thing that sticks out for me was how people told me that I had to read Temple Grandin.  My thoughts about that were, "Who the heck is Temple Grandin and why would anybody think I had time to read." 

I continuously asked Management if they would move me and they refused to let me move to another section.  Finally, another company bought the apartment complex and they planned for a huge renovation.  Long story short, the renovation was completed and I moved into one of the town houses.  The problem was is that they moved me way in the back where all the bad stuff happens.  Everything came down at once.  It was the fall of 2007.  Sam was being kicked out of the Greece School District and he was hospitalized for sixteen days, I was diagnosed with Breast Cancer and the parents came to my house and told me that they gave their kids permission to hurt my child.  As I watched them huddle to plan how to hurt him, I found a lawyer that helped me get housing assistance and all three of us moved into a house.  We still live here today.  It is a very nice home.  It sits on an acre of land and there are no kids anywhere.  Sam is safe.

While discussions were going back and forth on where Sam was going to go to school I started Chemo.  I will never forget the day I started losing my hair.  I was doing very well with my mental health and unfortunately after chemo I fell into a deep dark depression for over 2 years.  I was hospitalized after my brother was in a serious car accident and they didn't think he would survive.  I remember being pushed in a wheelchair everyday for radiation.  Luckily the psych ward was at the same place I got my cancer treatments.  Mina's Dad moved in with us so I wouldn't lose custody of my kids.  My brother died shortly after. 

Sam started school at a BOCES program and to this day rides 2 hours a day to school.  I won't even start with the busing issue.  I have been so darn frustrated because he stayed at a first grade level with every passing year.  The school told me that they had to get the behaviors under control until they could start with academics.  I don't really know how I survived but I will always remember coming out of what I call my "Cancer Coma" the first week of January 2010.  I had gone to my psychiatrist every 30 days for over 2 years and I woke up that first week of January 2010 and I was ok.  The fear was gone.  I remember the first thing I did was watch the Ellen DeGeneres Show and wow did I laugh.  My first laughter in over 2 years.  I was addicted to that show because I was starved for laughter.  I had the best time.

The one big thing that happened in January was that I walked into Blockbuster and I found the movie "Temple Grandin".  It is so much easier to watch a movie than to read a book so I grabbed it.  I sat down with Mina to watch it and for one and a half hours I jumped up and down pointing saying, "See!  See!  That's it!  Yeah!"  Mina was looking at me like I had completely lost it.  Since then I have read every single book she has ever written.  Her message is clear, "Find the talent and find the mentors."  She says so much more but that message is her mantra. 

This is what I did after I read Temple Grandin's work.  I remembered that picture that he took when he was five years old.  I remembered the complete meltdown at camp and I remembered that he calmed down after he hung out with the photographer.  I remembered how he couldn't stop touching my phone while driving me nuts because all he wanted to do was take pictures.  I remember thinking that I went through hell for a reason and it was time to get down to work.  I had an idea and I poured over all the "Black Friday" ads and I bought him a Nikon Coolpix camera for Christmas 2011.  It was a point and shoot camera.  It was a $300 camera that I got for $200.  My parents paid for it.

This was my idea.  I talked with Joe, his Music Therapist, and I asked him if he would teach Sam how to hold the camera.  I was going to make a facebook page, under my name, have him upload his photos and I would find friends and I would have them comment on his photos. Sam would read the comments to improve his reading skills.

This was his very first photo.

I thought it was pretty good.  An then he took a picture of his sister with her guard rifle.

I thought that this one was pretty good too.  And then he grabbed the camera that was in the car and took a picture while I was scrapping off the windshield. 

This was the photo where Joe and I started scratching our heads.  I personally think that Joe was scratching his head before this.  I wasn't really sure what was happening.  In February after he got his camera he took this picture.

There are so many more photos that he has taken.  I think that this one is my favorite.  He took this last Spring.

When I tell people about Sam's photography some tell me, "Congratulations."  I was first taken by surprise by this comment that I have heard a couple of times.  I wasn't exactly sure what it meant.  I now think it means, "Congratulations, you found the gift."  It took years of questioning what I was doing.  It took years of wondering if it was ever going to get better.  It took years of begging for help and finally finding it.  It took years to listen, watch, and learn.  It took chances and putting myself out there and thinking outside the box.

Sam and I are walking this path together.  I have no idea what the next chapter will be.  I am so very happy I get to share our story with you.  Thank you very much for making it to the end.

Sincerely,

Debra Pierce Bellare

*As of today, Sam is reading at a second grade level.  I call this progress.  It is only going to get better.

*Sam now has his own page at Snapshots by Sam Maloney.

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

The Unexpected at the Liberty Pole

Sam and I went out with his friend Kendall to take pictures in the City.  I was all excited because I was going to take the boys to the top of the Hyatt Parking Garage.  Long story short, we were kicked off the garage.  I need to have permission from Hyatt management for Sam to take photos.  Another story for another time.

I announced that our next stop was going to be the Liberty Pole.  "Yeah!" was the response from the boys.  You would think that we were going to see the Statue of Liberty.  Being young is fun.  Sam was all excited as he asks if he can take turns riding his scooter.  I know who will be carrying the cameras.  We park the car and the kids ride up the street.  I could tell that they were more and more excited as we got closer to the Liberty Pole.  First I had Sam take some pictures on the way. 

This is the George Eastman Performance Hall where the Rochester Philharmonic Plays.

This shot was also taken while walking to the Liberty Pole.

One of my favorites of the night.

Finally reaching the Liberty Pole

The Liberty Pole is a steel sculpture on the intersection of Main Street, East Ave and Franklin Street in Downtown Rochester.  The first pole was erected in 1846 and made of wood.  After it fell, a second pole was destroyed after a Christmas storm in 1889.  The third and current pole was designed by James H. Johnson and was erected in 1965.

The literature talks about how the old wood liberty poles were places that people met.  I can imagine the woman in long skirts and men with top hates whispering their love messages, "Meet me at the Liberty Pole."  My minds eye sees horse drawn carriages as people bought their fruits and vegetables at the Farmers Market. 

From my conversations with people it is said that the steel pole was full of controversy.  I guess Rochestarians thought that the steel pole was ugly and useless.  This is the first time I have been to the lit up pole and it is a beautiful site.  Santa Clause and the Rochester Mayer meet the townsfolk every year after Thanksgiving to light the pole.  It is a Rochester Tradition. 

The three of us get closer to the pole as the kids are taking turn on the scooter.  I get Sam all set to take some photos.

This is one of my favorite photos that Sam took that special night.

Sam took this photo soon after we got there.

The Liberty Pole today is a hangout for skateboarders.  It is basically a hangout for kids that have no other place to go.  Kids were filming themselves while performing  their special stunts.  Sam loved this as he went around and around on his scooter.  Suddenly these two guys come driving up and start unloading their sport bikes with their professional cameras.  The skateboarders no longer seemed interesting. 

I introduced Sam and asked if he could take pictures alongside them.  The two young men were having a photo shoot for a sport bike calendar.  It was such a perfect opportunity for Sam.  They set up their equipment and started taking pictures.  These are some of Sam's.

This is one of the guys getting the proper ISO.

This is Sam's picture of the bike.

I don't know which one I like better.

Sam watched as the young men were taking pictures in the street while I was telling Sam how dangerous it was and not to take pictures unless there is someone with him to watch out for him.  "I Know Mom!" was the response I was rewarded with.  We watched for a few more minutes, said thank you to the guys and headed back to the car while taking more pictures.

This is a picture going toward East Avenue.

Black and white.

My favorite of the night.

Last picture taken of the Liberty Pole.

The last photo of the night.

What was Sam's favorite part of our trip?  The guys with the motorcycles.  This is on my top ten best nights because for a short period of time Autism did not exist. 

So my story doesn't end yet.  Sam works with Sarah, his music therapist, at the Hochstein Music Therapy program every Tuesday.  Sarah and Sam work on his photos in the Computer Lab.  This is one of the photos.  Sarah is a very talented therapist and I was thrilled when I saw this photo.

There is a very special facebook site called How to Photograph Your Baby.  It is run by Nick Kelsh.  Nick Kelsh is a remarkable person who I have grown to admire.  His dedication to this site is amazing.  Nick chose this photo to make a Christmas card for Sam.

This was his message to Sam.

For Sam, I love that you've been getting experimental! Isn't picture editing ama...zing?! Great picture of the Christmas light tower. Fantastic.!

I thought you'd like to see a picture I took of myself when I was just a bit older than you are now. I had to do this in the darkroom which you would have loved! (How about those cool glasses?!) Anyway, this is my little Christmas card to you and your family. Thanks for all of your hard word this year and Merry Christmas to you and your wonderful mom! Everyone on this site is so excited to see what you have in store for us next year! I can't wait to get you on the new website that's driving me crazy. Keep up the fantastic work!

I find it amazing that all this happened from one night.

I know that the holidays are over and it is tax time.  I hope Sam's photos reminded you of the magic of Christmas. 

Happy New Year!

Debra Pierce Bellare

One last photo of Sam riding his scooter.