Tag Archives: Adaptations

My “Dream that Turned Into Reality”

The History toward achieving my self-determination

(IRI) Independence Residence, Inc. (the IRI facebook page is here and twitter is here too : IRI and their youtube page is here: IRI) is a non-profit agency that works to help establish connections and better relationships for people with developmental disabilities and other disabilities to be self-actualized, committed to fulfilling independence, guiding the people they serve, and creating connections to last for a lifetime. This is what IRI does because they really care and are simply the best agency in the New York City region.

I started at IRI back in 2013 as a mentor/self-advocacy liaison as I continuously work to strive to positively impact the individuals that are served by the agency. Before I started at IRI, I always knew what I wanted to do, but was afraid to go about it. IRI gave me this opportunity as a gift that has allowed me to embark on my journey toward not only self-discovery, but a journey at helping others in the disability community find themselves and their voice.

Self-Advocacy is an important factor that helps people know who they are by identifying the way any one feels comfortable, learning to speak up, knowing their civil rights, learning what taking responsibilities means in their daily lives, helping our friends speak up when they are worn out or overloaded, and incorporating every aspect of their life by giving to the world the gift of self-actualization.

My work at IRI started out in this way especially when I started working with about 6 to 7 of their self-advocacy groups late in 2013 to teach self-advocacy, self-determination, and living an independent life. I have done so much for them so far including creating presentations, creating my self-advocacy board game, using my muppet “Max” (non-binary gender, multi-sensory, Autistic, 85 years old, Max is non-binary gender in appreciation of those friends who really are non-binary gender) from December 2010 when I bought them at Columbus Circle. I continuously build connections with not only all the individuals who are my peers, but with the staff who I can say are my peers too in the broader community.

I have earned their respect. I have helped in so many ways including the way they thought about re-writing a vision, mission, and values statements for their organization. I brought them to the next level of being able to guide the individuals they serve toward the person’s with disabilities self-determination.

Now I have self-direction services in which they were part of the help toward me achieving this for myself as I help their individuals. Although, my self-direction services is through Westchester Institute of Human Development, ARC of Rockland, and my 13 people and growing of my circle of support I create for myself.

What is self-determination?

Well, self-determination means something different for everyone. That’s the beauty of self-determination is that it is a definition that changes for each person’s own individuality. Some people need a balance of the medical model and social model while others need solely the social model of disability. Social model of disability is obviously the not so stigmatizing model. The social model is good for everyone to understand that they have a choice of whatever is good for them. This is what is called ‘person centered’ approach.

Social Model vs. Medical model

The medical model is not and never is ‘person centered’ because it states that the person is the problem and needs to be fixed or eradicated from society. It also is stigmatizing in many other ways by saying that the person is not human and a burden unless they conform or fix their ways to be like the mainstream ‘status quo’ of the society the individual belongs to.

Conforming can be in the way people move, make eye contact, quiet hands, or even speak with the same language as the masses do. The ‘status quo’ is not necessarily bad, it just means that everyone is standardizing the approach to communication, language, movement, hearing, sight, touch, and expressing oneself in the world. This is why the social model of disability is better!

Is this right or wrong? Well, it depends on what an individual wants from their life. Some people are fascinated with the status quo. But, what does the status quo even mean? What does it mean to be mainstream?

Communication is Key!

Some people or most people in society, expect immediate responses to their communication in an impromptu response through speaking through the mouth. However, any one who speaks too deviant from however the status quo mainstream people speak, is often shunned, ostracized, silenced, placed in institutions, and/or written off as not even human due to being seen as bad people by much of society. This is the reason why mainstream society and the majority individual non-disabled citizens of the world strive for perfection with their black and white thinking of what they deem the ‘perfect’ human being. This is not right, not fair, and does not allow diversity to thrive in the world.

Everyone is different and societies in this world need to remember diversity matters rather than pretending it does. Differences is what makes us human no matter who we are and what we do to achieve our successes in the world. If you meet one human being, you’ve only met one human being.

Appreciating and grateful for my connections I make and my family

IRI, CUNY SPS, JCC in Manhattan, ASAN, my connections I made from CAFETY, SANYS, the many peers I have met through the years especially since 2013, and of course my wonderful loving family have all helped and continuously help me in so many ways.

I have created an amazing network of people I can say I know and cherish every moment of my life as an amazing creative story that I make for myself. If it wasn’t for these people I have in my life, I would not been given a chance to embark on my own self-determination. Not only that I am now able to build my goal of finally becoming the person I always wanted to be. Ultimately, finding my voice and self even though it’s hard when being influenced by so many people I talk with in my interactions in the community. And, these people help find and give me my voice!

Detaching from other people’s conclusions to finding my Authentic Self

It’s difficult to detach from other people’s conclusions when I have thousands of people’s conclusions in my mind that confuses me. I am learning to detach each and every conclusion to formulate my own personal conclusions without forgetting any of these people either (meditation is the perfect grounding point for me). Everyone’s story and conclusions is important and unique to them. Though, my voice and authentic self is what counts to what I want for myself and what is good for me, nothing more. That is my self-determination!


“Turning Dreams Into Reality”

Happy Autism Acceptance Month that begins in 24 hours as April begins. Thank you for everything from everyone who helps me especially my family! It is my life now and what I want to do finally and guess what, I have not only my family supporting me, but so many others as well.

Emotions roll over us all the time, but it’s just a matter of staying a positive force in the world to become the wonderful person that we are with the spirit that lies within us…

Love is wonderful thing!

Now, listen to this song: (Almost Paradise by Mike Reno)

OUT, J

A sky full of Lighters represents my angels and 1 year later…

I try very hard to live my life the best way I can, but I know I can always try even harder.

One year and one score away from an almost ending to a new beginning established in my life, I feel great knowing I feel new. In two  years, I have had 2 major surgeries which makes me feel today, spleenless, oops, I mean speechless as I noticed I have been operated on twice. I’ve been given a second chance at life or may be I just have 9 lives like a cat. My surgeries are truly a blessing to keep me alive so I can live a fulfilled life doing the many things I want to do to achieve great feats.

If it wasn’t for a truly good friend to help me get through my surgery last year, I don’t know where I would be today because she sure had the experience with her previous heart surgeries to be able to help me.  You can read about my friend on her blog Ellen’s Crazy Life.  It amazes me how this person spent time with me on the phone answering all my questions about Open Heart Surgery.  I have so many people who care about me so much especially my family.

My emotions draw in to the feelings I feel toward others.  I feel for others so much. I only want the best for any one especially myself emphasizing love, connections, warmth, and achieving talents by positive influence in helping anyone to gain satisfaction in their lives.

What better can a person do to help another?

I believe life is strong and hope is our newest generation to achieve.  Sometimes things happen to start new beginnings in a person’s life.  I am in a new beginning with a new chance at life.

I may have had problems connecting beforehand learning to symbolize who I am, but now I am off to a good start.  My life keeps on getting better even though I am at the beginning of my new era.

I wonder what joys I can give to others now, but most importantly to myself.  I wonder if I can bring peace and harmony to my spirit because by doing so, I bring peace and harmony to the world. It may take some time, but at least I am showing what I want to do and show I will do it.  Second chances, third chances, etc don’t come very often, but I know I am needed to do so much and get my life in order. I still have much to process what I learn and continue to learn in the future.  So here it is, I am moving forward in this life to be the best I can be fulfilling my name as a blessed celebration.  I know I haven’t done much yet, but I will!

It’s important to be a leader and carry your own weight.  Adaptations has been great as well as my family who gave me things I need to know.  Friends I meet either from conferences I have been to or Adaptations or my many friends in Ultrasound I have met through the years formed a great network of people in my life.  Now its time to branch out even more.

Sometimes I am stronger than usual, sometimes I am feeling down, but sometimes I just need to see the people, places, friends, and family who are always supporting me from so many different places even from around the world. DMC gave me so much. I feel so grateful in my life and thankful I can continue to strive for greater successes.  I certainly can’t wait to see what tomorrow brings to give me an even better life. My rebirth in to this world is a blessing because now I have the chance to do everything I ever wanted to do and get it done.

As a sky full of Lighters is surging around, I am feeling very pleased and happy my angels are around always.

OUT, J

Answering Questions: Life experiences with Aspergers

Question from a reader on Facebook: How did you cope when 1st finding out?  How are you coping/experiencing life better? How do you not let it affect you? 

It took me awhile to cope when first finding out. My mom gave me articles to read on Asperger’s Syndrome in 2004 when I began self-diagnosing myself.  I was feeling very shocked, but relieved.  I coped by just pushing myself because its important to feel positive and my mother encouraged me.  My mom tried to help me find groups for people with Asperger’s Syndrome to help connect more to other people.

The first group she found was the GRASP (Greater Regional Asperger Syndrome Partnership) manhattan group in January 2005.  I immediately subscribed to join GRASP, but was too nervous to go to a meeting until early February 2005.  My life began transforming since my very first GRASP manhattan meeting.  I met every one there and didn’t realize how much I related to a lot of those people who went to the meeting too.  I remember talking to Michael John Carley after the first meeting as he shook my hand telling me inspirational words of wisdom.  The meeting was a success and so I kept on going back to the meetings as much as I could until they had to move the meetings further downtown in manhattan which made it harder for me to go. GRASP really helped me realize what NEURODIVERSITY means and helped me establish who I am and why I am here to live my life.  It happened at the right time in my life when I needed it.

I finally got officially diagnosed with Asperger’s Syndrome by Dr. Richard Perry in 2005 and really appreciate all the help he gives to me too.  By 2006, GRASP really had not had any meetings for me to go to and I needed a place to connect with and feel a part of community. Dr. Perry and a couple of people I met from GRASP earlier, told me about the Adaptations program at the JCC in Manhattan.   I remember trying to call the Adaptations program as soon as I could, but no body responded to me at first.  I was feeling very uneasy and even started my first job in May 2006 doing Ultrasound.  I really needed a place to go to find friendships which is very important for any one’s life.  I was encouraged to try calling the Adaptations program again later that year.  I finally called again and joined the program. After that, I really haven’t been to GRASP anymore which saddened me, but I knew the Adaptations program somehow needed me to connect.  I would like to go to another GRASP meeting in the future just to see those folks again.

Anyway, at first I wasn’t really doing much with Adaptations and my mom had to really push me like she always does. It wasn’t until 2007 that I really became an active member of the program. I was working at my job so I could not go as much as the others who were not working, but like I am always told work comes first! I have met so many people since 2005 who seemed to grow on me and help transform my life that I almost look back for a split second to see how I felt before.  I never had a real true friend pre-2004 and I have grown so much.  By the end of 2007, I met a person who I became friends with at Adaptations and I felt we could help each other.  Although we’ve had our ups and downs, I sense it has made us grow more as human beings.  I helped him break out of his shell and in a lot of ways helped so many others too.

My mother’s influence seemed to have latched on to me, in order to spread her word to help heal other people like I was helped.  Does it make me a integral part of the program? or Does it just mean I am able to inspire others to work harder and feel better about themselves? The Adaptations program which tries to influence members there to be more adaptive and flexible building community will always be there for any one no matter what for support.  Hopefully the idea of Adaptations’ goal of training to be adaptive and flexible spreads throughout all the members and beyond. I hope one day my dream comes true and the program expands worldwide for any one to enjoy. Every one deserves a place for an interactive community of enjoyment, learning, and respect for each other.  Isn’t that what life is all about?

I am currently in the realms of starting my own Autistic Self-Advocacy Network social support group in Rockland County, NY as well to spread Neurodiversity. This will help others learn to be self-advocates too even express themselves and learn to feel inspired to do well.  The Autistic Self-Advocacy Network has been an inspiration to me and I hope I can be a part of them always. I love their saying “Nothing about us, without Us” because it really is a true statement.  The President of ASAN, Ari Ne’eman has been working with me on creating this group.

I also would like to plan starting my own International outing/Conference to help a Neurodiverse crowd especially people on the autism spectrum to meet a date, learn new skills, experience the world differently, and just enjoy life to gather every one from around the world!! I have recently been working on my ideas and planning it out in my sketches and journal. I want to start this outing/conference to see all the fishes in the sea and not feel limited by just a few.

By the way, when I was growing up I used to make up stories of working on outings/conferences, groups like these when I was downstairs in the basement where the family computer was.  I could spend endless hours in my basement doing this, making up characters, and situations by myself.  I used to even have a pretend company called BGAS (Boys, Girls, Adult, Senior citizen) club corporation.

I also am still working on my book about having surgery and being on autism spectrum. And as always I am very spiritual and always feel the connections with the other side with all my angels by my side.

I am coping with it now by trying to be proud of who I am and what I can contribute to this world. I have come a long way and know I have a way forward more to go.

At first I did let it affect me, but with all the support I have gotten I don’t need to be affected by it anymore. It is a part of me, but not everything about me. I am Autistic/Aspie, but I am also a person first!!

Can Asperger’s be misdiagnosed as Depression?

Absolutely!! There are so many different ways Asperger’s has been misread as other conditions.

Did you get diagnosed straight away accurately?

No, I was not diagnosed accurately for most of my life.  I was misdiagnosed with any thing and everything because other psychiatrists and doctors didn’t understand the autism spectrum. Now I hope all of these professionals who misdiagnosed me are finally educated.  If they are not educated by now, they are not humble.

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Just a question for all of you from me: Who would you want to date? Another aspie/autie? or a Neurotypical? or no one?

I hope you liked it and read on,

OUT, J

Here is a short autobiographical story guest post from David Zornetsky

(David Zornetsky is a 31 year old man on the Autism Spectrum and a member of Adaptations)

I was born on December 3, 1979, and diagnosed with Asperger’s Syndrome during Kindergarten.  AS is characterized by obsessions, repetitive body movements (such as hand flapping), and difficulty socializing with people, among other things.

During my years in elementary school, as a result of my inability to socialize, I had very few real friends.  I spent most of my time daydreaming about life during 18th – Century America.  This continued throughout my graduation from a two – year college (by that time, I also focused a lot of my thoughts on science fiction).  I felt very lonely, and at times, depressed.  This got me on medication.

My middle school years were the worst, in that I was the victim of endless bullying.  This was partly my fault because, out of fear for my family’s financial situation, I developed a habit of scanning the floor for money.  The other children saw this, and began harassing me.  It took endless work by my parents, teachers, and school psychologist to get me to stop this habit, which soon led to a dramatic decrease in incidents of teasing.

High school was much better in terms of bullying, but there were two new problems.  First, I became desperate for a girlfriend, and never got one, despite my having asked many of them out for a date.  Of course, the reason for this is because I never gave myself a chance to get to know them.  I just went right up to them and asked them out.  Second, out of jealousy of the girls, I wanted to wear skirts.  While I may never know if my school would have allowed it (a few are alright with the boys cross-dressing), I was too afraid to ask my parents if I could do it, which was understandable, given the taboo of the issue.  This filled me with severe anxiety and frustration, and actually led me to become psychotic, and I was therefore taken to a school for students with problems.

When I went to a four – year college (from which I did not graduate), out of extreme desperation, I finally was able to make more friends.  Yet, I talked to them mostly about a relatively new obsession of mine – lgbtq rights (a lot of this had to do with men cross-dressing).  Also, I began wearing skirts (first, it was women’s skirts, but then I switched to skirts designed for men, as well as kilts).  I felt a lot happier, and even received a handful of compliments on my new attire.

Now, I am doing much better.  I have many friends at a Jewish Community Center, and despite my obsessions, I have broadened my topics of conversation with them to include things such as a variety of political issues, my interest in writing, science fiction and technology currently available, and my recent investment in the stock market.  In addition, we sometimes discuss our interest in entertainment and what we have done during the past few days or weeks.  Finally, thanks to encouragement from my parents, it has only been during recent weeks that I began joining in other people’s conversations.

(more posts to come from Autistic Artistic Carnival very shortly…)

OUT, J