Please Bring Sunflowers

Sunflowers are my favorite flower.  When I lived in my hometown when My Mina was little I had a field of sunflowers in my yard.  My dad would bring his rototiller and build me a small field to plant my seeds. My memories are filled with my small four year old daughter watering the small space that my dad had helped me build. They would grow into these beautiful bursts of colors of a rainbow of orange, brown, golden yellow, maroon, and reds.  I would sit on my back steps and watch them and besides loving my children it was one of the best feelings I have ever had.  In September they would start to wilt and die and the seeds would start to mature.  My favorite thing would be to walk to the small field, clap my hands and watch hundreds of birds fly out of their feasting ground.  I did it every year.  I miss my small field of peace.

This wasn't my field, I wish it was my field.

I have a tattoo of a sunflower on my right shoulder to always remember my small space of heaven. Sunflower to me represent good mental health.

One of my favorite photos.

I had my first nervous breakdown when I was 30.  I had almost lost my daughter and my Mom saved me by coming to get me the day before they were going to take My Mina away from me.  I lived with my parents and I didn't leave their house for a year.  I was very ill.  It is unfair to call a mental illness an illness because today I am still diagnosed with Bipolar but I am not ill.  I was ill when MY Mina was little.  I finally got on my feet and I moved a few blocks away from my parents.

One of my favorite memories was visiting my elderly neighbor and she would talk and talk about how much she loved my sunflowers.

Sunflowers also make me think of my funeral.  The only flower that I want at my funeral are sunflowers.  If you happen to come to my funeral and you bring me a rose, I have already asked a friend to turn them away.  That may sound rude but that is just the frame of mind I am in today.

Sam loves to feed the birds in our yard and some seeds drop and  grow.

Thinking about my funeral also makes me angry because I sure do hope I live long enough to see Sam's success.  Just like when My Mina was little  remembering her watering the sunflowers,   I also remember Sam's first picture that he took with his camera.  It is the same type of memory.  MY Mina grew into this amazing, talented, fun loving, wonderful, intelligent girl that I almost missed having the pleasure to raise.  I didn't get to miss it. I don't want to miss seeing who Sam is going to be.

                                 One more from our yard.

I am going backwards in my story starting at the ending but the ending is what it is all about.  Autism is awful but it isn't my son who has Autism that is awful, it is people's reactions, misinterpretations and misconceptions that are awful.

The goal for Sam is to learn how to self advocate. For six weeks I got the reports that he was restrained and he had trouble in Music and they don't know why, blah, blah, blah and it ended up that he had to sit and listen to wheels on the bus with all of the versus with the windows and the doors and the babies.  Yeah, he felt he was going insane I am sure.  High pitched, infantile things don't go well with Sam.  Anybody who knows Sam knows that.  I told the school that and when I found out the IEP coordinator apologized blah, blah, blah, blah.  Sam now has an appropriate music class.  "Yeah for Sam!"

So now I am getting the reports that he has appropriate functional skills from the OT and a whole bunch of other round robin wheels on the bus go up and down language where I just don't understand their point.  I get a note today that Sam flipped off the teacher with both hands today.  That is Sam's new thing.  He first would flip you off with his pointing finger and after he got comfortable with that he moved to the middle finger and then it was full throttle with both hands fingers straight up in the air.  He got that from me.  I think he inherited it.  I did the same thing when I was little.

The note from the teacher today said that he won't choose a break card.  The goal is for Sam to self direct to take a break.  Sam won't choose the break card.  Why won't Sam choose the break card?  I told the teacher I would talk to him and find out what I could and I would get back with what I find. The teacher is trying really hard to communicate with me, even though he is probably scared of me, (I mean I am Bipolar and they know it) and I tell him how much I appreciate the communication.

Sam and I were driving today and I am asking him questions and he doesn't want to talk about it and he finally said he doesn't want to talk about it because nobody will do anything about it anyway.  Well, I am a pushy thing and I finally got that he gets stuck on the first break card.  What is the first break card?  To take an animal walk.  I just about had a heart attack, I will get back to that at the end of this little story.

All the break cards are babyish.  They are all just like Sam having to sit in Music Class and listen to The Wheels on the Bus.  I am furious.  Sam did advocate and asked the OT for more age appropriate breaks.  She said that it will take time. Well, Sam doesn't have any concept of time.  I told them that.  So instead he got frustrated and flipped them off with both hands.  I don't blame him.  He tried.  He did what his goal was...to self advocate.

I am now on high blood pressure medication and 81mg of Aspirin.  I have an emergency stress test because I keep getting shortness of breath and pains in my chest.  That was my point about the sunflowers.  I want to make sure that everyone knows to bring sunflowers to my funeral.  I don't plan on dying, this stress can become unbearable.  I am doing this all myself.  I will make sure I take the aspirin and drink lots of water before I go to bed. They say that helps.

Don't forget the Sunflowers.

*Find more of Sam's photos at https://www.facebook.com/SnapshotsBySamMaloney & http://www.youtube.com/watch?v=TXhzf2Hxhqk

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

Self Advocacy

Having Sam as my son has shown me what courage is.  I watch him wake up every morning getting ready to do his life every day and it amazes me that he doesn't crumble more than he does.

As parents we begin our Autism journey with sorrow.  It is what it is.  What we do after our time or mourning is our decision as parents.  We fight for the therapies, we fight for the respite, we fight for our kids to have an appropriate education.  And then our kids hit the teenage years.  

I am not thinking about the ranging hormones and the lanky teenager who is going to smell.  I am not mourning the loss of high school dances and Sam not having "those group of kids" to hang with.  I am too busy thinking about what is going to happen when I am no longer walking on the face of the earth.

Sure, I am pissed off that I have to think about this.  I am also pissed off that Sam had to sit in a music class at the age of 13 listening to baby songs for six weeks when I thought I finally found a place that will see him for the 13 year old boy that he is.  It was a blow to my heart that he had to sit in music class and listen to "The Wheels on the bus."  I thought the fighting was over.

What Sam did next changed everything.  Sam spoke up.  He finally said, "this won't work for me."  The school changed the music class. I still have to go into the school to make sure they heard him and are going to accommodate him but wow, my total thinking has changed.  It is time for me to let him lead.  After the multiple restraints that have happened because of Sam's disregulation from having to again endure being treated like a disabled feeble minded invalid, he doesn't want to quit.  He wants to make it to his "other side."  

Self Advocacy starts within oneself.  It comes from feeling inferior and not being heard.  Self Advocacy is alive and well in the Autism Community by the Autistics themselves.  It doesn't matter what language you use as in person first or person last.  Self Advocacy is what you think of yourself and building your self worth from within.  Sam is going to choose how he wants to be referred to. Autism isn't who he is but it is who he is.  It is a neurological difference that makes him different.  It is Sam who is going to say, "Hey people, I need this or I need that!"  I am going to do my best to have him ask in appropriate ways.

People on the spectrum are abused, ignored and believed to be inferior.  The ones who have muscles that can't form the words are spoken in front of like they don't exist.  The Autistic Brain is an amazing set of neurological differences that bring out the uniqueness in the world.  It is those that are believed to be inferior who make the beautiful music, art and words that move the soul.  History has shown that.  I am not making that up.  Sam gets to be part of that.  

I can't wait to see how his brain develops as we find the people who are going to help him find his way.  When others press him down, he bends and explodes with curiosity and adapts to his environment.  I get to be a part of that too.  

I leave this post with one example.  Sam was walking with another photographer and we were walking across a bridge that connects one side of the Genesee River to the other and Sam came up with an idea.  It was a beautiful day and he aimed his camera over the gorge into the river.  He told the other photographer to start kicking snow.  You would never know by this photo that there was not a cloud in the sky.  It is my most favorite photograph that he has ever taken.  It is this photograph that gives me a glimpse into his brilliant mind.

*Find more of Sam's photos at https://www.facebook.com/SnapshotsBySamMaloney & http://www.youtube.com/watch?v=TXhzf2Hxhqk

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

Autism Awareness Month

I am not really sure if this is the proper place for my post but maybe it is.  It is all about Sam after all.  The question for me is this, "Why are we so behind the times when we live in 2014."

This is where I am heading with this.  While walking I was texting and it says, "Don't text while walking."  Has anyone died while walking and texting?  Maybe?  Why do they say that?  They say it because texting is our way of life.  Who makes a phone call anymore?

How did I discover Sam's talent in photography?  It all had to do with my phone.  All our phones have cameras and he was always stealing mine to take pictures.  I am running around trying to leave the house yelling, "Where is my phone!  Where is my phone!"  Sam always had it.  It drove me nuts.

Today, with all of the conference, speaker series and books I have read, I know that it was all non verbal communication.  He was telling me that he wanted to take pictures.  The photography started to teach Sam how to read.  It all happened from technology.

The big question today is how to get Sam to write.  Everything goes in a progression of events.  Sam can now work his camera like the pros but he now needs help in learning how to edit.  I am tired.  Sam now knows how to read, he learned how to read by reading his comments on his page.  He needs to learn how to write.  I am tired.

Somewhere someone has got to pick up the ball.  I am frantically trying to get my point across to someone. When Sam was two years old he would smash his crayons.  I particularly remember this blue crayon.  Blue is all I see when I think of Sam writing.

I also remember the screaming.

He would also write on the walls but every child does that.

I am lost, I am always lost.  I have lost count of the restraints that have happened over writing.  Fighting is what people see of me.  No wonder I don't have any friends, right?  That is what I have been told.  I have to learn radical acceptance, right?  That is what I have been told.  

Everything changed March 14th 2014.  That was his first restraint in his new school.  He also says that the guy grabbed his shirt, twisted it and pushed him against the wall.  A State investigation happened and the approximately 250 pound guy still works with my son.  We were late today and it was that guy who met me in the office to pick up Sam.  He was all smiles, I wasn't.

Sam is known as the kid who takes pictures.  OK, correction, the community knows him as the kid who takes pictures.  I don't know how the school sees him.  "But we gave him a computer?"  So, Sam can't spell.  He can talk into a computer, he can start the word and have the computer finish it for him with the right program.  Sam recognizes the words because he can read.  If I thought he could be writing with a pen and paper I would be doing that.  I try to get him to do things with writing but it is way beyond me.  Again, I am tired.  If I had a choice of Sam either knowing how to read or to write I choose reading.  I believe I have made the right choice.

I wish I could say that I didn't just give Sam a camera.  That is exactly what I did.  What took the work was getting him to read.  It is the same way for writing.  Sam knows how to work a computer.  He needs to learn how to work it for writing.  That takes time, patience and somebody who knows what they are doing.  It takes someone trained in Assistive Technology.

I will keep fighting.  

*Find more of Sam's photos at https://www.facebook.com/SnapshotsBySamMaloney & http://www.youtube.com/watch?v=TXhzf2Hxhqk

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

Austim, Nature & Photography

Who would of thought there was such a thing as Nature Therapy?  Who would of thought it all tied into Sensory Integration?  I never would have.   I have always known that being out in nature is what drives Sam.  Maybe now I know why.

I was talking with Joe Cubiotti, a fabulous photographer, and I said, "I don't know if Sam will grow up to be a photographer.  Photography is not what makes him tick.  Nature is."  I had one worker ask me, "What are you going to do with all of this equipment when he decides not to do it anymore?"  People might say, "Now wait a minute, but he is so talented!"  The future is yet to be seen.

Joe and Sam

I am trying to think of how I knew that nature and photography was the ticket for Sam.  I remember when I decided to do the "Photography Project" with Sam's Music Therapist, it was to get Sam to read.  My plan was to make a facebook page, post his photos and have my friends comment so he could read the comments.  It was a lot of work and I got to reconnect with people back home.  It was a win win, right?  Wrong, I got to connect with my high school friends and I got to listen to a lot of screaming.  I remember a time when someone said to Sam, "You don't have to read the comments if you don't want to" and I am thinking,"yes he does."  Desperation calls for desperate measures and my son was not going to go through life not being able to read.  I remember all of this so clearly and yet I don't remember how I came to the conclusion of taking him out in nature to get the material to teach him how to read.

Sam's worker, Patrick.  We would spend a lot of time reading his comments.

As I look back at all the photographs I feel elation that this is how our story unfolded.  What makes me sad is that  I don't know if I would of continued with the photography if he didn't have the talent.  I can't honestly answer that.  I remember in the beginning sitting with my nephew on Thanksgiving 2010 and asking if we should be Nikon or Canon people.  Talking with my nephew I discovered that Nikon was known for nature and Canon was known for portraits.  I now know that it doesn't matter, it is the photographer.  Not knowing that Sam had the talent, I instinctively knew that Sam would have no interest in taking pictures of people. This is a no brainer since he had such a difficult time making eye contact.  I chose Nikon.

Sam's first camera.  Photo taken by Renee Hall Photography

I sit and pull all the memories I can out of my head.  I remember his very first photograh.  It is hanging at Hochstein school of Music & Dance where the photography started. I remember after that first photography lesson I started having him shoot outside.  I probably knew that Sam would probably not understand the lighting inside and I might remember thinking that.  This is probably what led me to nature.   I needed a subject after all.

Sam's first photo.  This photo was taken January 3rd, 2011.  Sam opened up his first camera Christmas of December 2010.

I don't remember our first trip and that kills me.  My focus was on reading and I just don't remember.  My one vivid memory was loading his photos and asking him, "Did you take this?  Where did you take this?"  Week after week I went to Sam's Music Therapist asking him, "Are these pictures really good or is this just me being his Mom thinking these are really really good photos?"

Sam took this at age 10.  I am outside scraping the windows of the car.

After that the focus was on getting him a creative arts program.and my memories won't surface.  What I do remember is the arguing. Sam went in full meltdown constantly over photography and I would say, "Why are we doing this?"  and he didn't want to stop. Kudos to Sam.  Every time I said, "That is it! I am done! I don't want to argue!" and he would cry and say, "Please don't quit, I don't want to quit."  I have this thing where if I travel over an hour to a location Sam has to come home with at least a handful of photographs.  I am continually pushing.  Sam is too busy throwing rocks and watching the stream.  And this is where my "Aha!" moment begins.

It was last Sunday and we were with Joe.  Sam was lifting heavy rocks and watching the stream.  There are five focuses of sensory integration I believe.  Proprioceptive, Vestibular, sight, smells, touch.  At least these are the ones I know of.

Proprioceptive is the need for heavy lifting.  It gives a person a sense of being grounded and connected with the earth.  Wow, Sam is always throwing rocks and lifting the heaviest branch he can find.  Sometimes he wants to carry a log and I put my foot down on that one.  Sam always has a purpose in his actions.

 And what about the camera backpack?  That thing is heavy.

Vestibular.  Some kids like to spin, some kids like to rock.  Sam likes to walk across streams while balancing on rocks.  He craves it.

Corbett's Glenn, Penfield, NY

Sight.  Oh my goodness!  There is so much to look at.  Take a walk in the woods.  I mean the real woods.  Sam shows me deer beds, deer droppings and it looks like at the end of the night all the deer gather to sleep.  Sam loves birds.  All I have to do is look at Sam's bird photography to get how beautiful they are.

Mendon Ponds, Mendon, NY

Smell.  I love this one.  Last Sunday Sam picked up a pine branch and smelled it all the way to the car.  He even rubbed it on his coat.

Touch.  He kept rubbing the end of the pine branch to feel how soft it is.

Oh my goodness, with all of this no wonder he doesn't have time for photography.  I honestly believe that these are all sensory seeking so Sam can feel regulated.  Thank goodness, right?

I will still keep pushing.  Sam's brain is still developing.

Again, the future is yet to be seen.

Mendon Ponds, NY

*Find more of Sam's photos at https://www.facebook.com/SnapshotsBySamMaloney & http://www.youtube.com/watch?v=TXhzf2Hxhqk

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