Tag Archives: autistic

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

Struggling to Communicate with People my Whole Life

Communication is key!!

However, I have been struggling to communicate with people my whole life from speech difficulties, being Autistic (not being a mainstream general person), and living my life as a person who cannot understand the jargon most people including my family tries to convey to me. This is when self-advocacy becomes important especially when I need my space too, understanding other people’s words spoken to me, and knowing when to communicate with or without my mouth.

Communication is key!!

But, my communication style has always been a struggle for others to understand. I do have echolalia, I do have multi-sensory issues, I do stim, I do think visually, and I love listening to people through music and I do love to dance like my papa Dave did!

Communication is key!!

Struggling to communicate is improper with people who struggle because everyone needs to interact and speak in a standard way through vocalizing thoughts through the mouth from mainstream society.

What can we do? What are we able to communicate to others when there is a disconnect especially with families and their Autistic children and siblings?

Connection is good, however when there is too much disconnect between families and their Autistic children or siblings, there needs to be a meeting point of each other to meet half way. By meeting halfway, we need to communicate by seeing each other at the right distance without seeing too far or too close. This is a problem for all families of Disabled people and Disabled people themselves.

Communication is key and the social model is much better when the medical model has caused so much pain and stigma!!

When can communication become the right when all of us who need to connect with each other? When can we understand and accept each other regardless???

Language is individualized for each person. Self-determination is important for everyone while the importance of connection continues through learning from each other, learning on our own, and not being dependent on the system being medical model or stigmatizations society give us.

This is all the things to think about as when we need acceptance and understanding during the month of April for Autism Acceptance Month.

Remember communication is a two way street of understanding each other without getting too stressed, too angry, too overreaction, or too hurt from pain causing other’s too much pain too. I have felt pain in my past, but now it’s time to move forward and be happy as I remember the very need to maintain myself to continue to be positive!

Love my family, love all my friends, love all my support network, and love the world.

Thank you all!!!

Communication is KEY!!!

Doing well in graduate school!!!!

OUT, J

My Reflection from class in the Fall on ‘The Curious Incident of the Dog in the Nighttime’ by Mark Haddon

SPOILER alert: For anyone who has not read this book yet!

In Mark Haddon’s book “The Curious Incident of the Dog in the Night-time,” it made me think of the visual thinking I have. The character in the book, Christopher, has much anxiety, panic attacks, sensory issues, and visualizing his plans to be able to function in a society which does not accommodate Autistic people like him that much. It showed how very intelligent, but concrete Christopher was too, even with math and science. It was pretty accurate portrayal of what goes on in my mind with a few differences.

I find that there were similar traits to how I feel in society. The similar traits between Christopher and myself are that we try to adapt to a society with many multi-sensory experiences in the world. For example, when Christopher was traveling to London to be reunited with his mother, he was trying to compensate by trying many different relaxation techniques. One of which was counting to 50 breaths so he could stay calm. He also was vocalizing a lot on the subways in London which I do a lot when I am on the subways in New York City. Some people actually are staring at me, but then I turn to say hello to not be known as a freak to them.

Christopher was very compassionate for animals and much feeling for the dog that his father killed which is why his father bought him a dog at the end of the story. Although his parents split up, his parents had their own way of living with their Autistic son, Christopher. In order for both of his parents to accept him for he is, the mother split a part from his father by finding another man which eventually she broke up with. The father hid letters the mother sent grieving for Christopher’s forgiveness in the way she used to treat him. When Christopher lived with his father solely, the father didn’t embrace and accept his son for he is, and always tried to construct his son to pass as normal as much as possible. His father eventually celebrated him too.

It was only until after Christopher found out his father killed the dog, Wellington, and Christopher sought out to find his mother, that both parents accepted their son. Acceptance is a process and everyone has the chance to work out their issues with themselves to celebrate who they are and other people. When a child has a disability like autism, many parents don’t want to accept their child is Autistic, instead find a way to ‘fix’ them or make them ‘pass’, and not honoring the person their child is. Many parents look to organizations like Autism Speaks and Autism Science Foundation to fix their child to be like everyone else in order to ‘normalize’ their child. But, what is normal, anyway?

All throughout my childhood, I was always Autistic, but was never diagnosed until I was an adult. I was always very anxious to be around society, I didn’t like people touching me in a certain way, and still don’t. I also had many other sensory issues like not wanting to be around abrupt noises and I do stim either with my hands or my whole body.

Autistic people need routines, a sense of knowing what is going to happen, and repetitive thinking in our way of doing things. Sometimes being Autistic can be frustratingly stressful causing a panic attack when we are not knowing what to expect from a new situation or person. New situations and people can be anxiety provoking for Autistic people like Christopher or myself. However, autism is a developmental delay which means we can learn to be comfortable with things in time at different times of our life. It is what makes an Autistic person a human being too.

When I meet other Autistic people I feel happier than when meeting a person who is not Autistic because I am able to communicate in the language of autism with anyone on the spectrum. I believe Christopher from Haddon’s book would feel the same way. It does not mean I don’t like meeting Non-Autistic people too, but there is a different feeling when meeting other Autistic people. Everyone has their unique properties of being Human, but most importantly everyone has people they are most comfortable with.

When I attended Autreat the last 2 years that Jim Sinclair ran it, I really loved being able to Flapplaud with our hands instead of clapping. The first year I attended Autreat, I loved being able to use interaction badges to know when we wanted to communicate with each other. I also enjoyed working with the Autistic children at Autreat in 2013 where I ran the children’s program there because my friend who ran it became ill during Autreat.

Autistic people need to have the community we live in, to adapt to our needs and wants too. Police officers and other authority figures are becoming increasingly aware of what it’s like for an Autistic person in the community. For each culture in Humanity, we learn different things from different people. It does not matter what culture we belong in, whether it’s Autistic culture or Deaf Culture or any other culture in Humanity, we need to find a way to communicate and accept each other.

Haddon, M. (2007). The Curious Incident of the Dog in the Night-time. National Geographic Books.

A Poem and a Challenge for you from Drive Mom Crazy Blog

Life bleeds,
life burns,
life scars,
life rejoices,
life reoccurs,
life sulks,
life smiles,
life rises,
life declines,
but most importantly,
life emerges from the distance
as either a rising up to the sky
or a rebirth and rejuvenation to
live it all over again.
Life cries with weeping tears,
life misses other people,
but life also brings the spirit
to all of us to live our life.
I know the passing of great people
in our lives is saddest when
we can’t seem to fathom why?
Why them and not US?
Why them and not I?
Our mission is one
and our mission is whole,
our mission is guided,
and our mission feels fiction sometimes,
but we need to shut our eyes,
we need to gaze into the light and remember,
remember why we are here, and why we are there,
and remember we will return one day
knowing we changed the world, we changed ourselves,
and we changed from hate to love.
Filling our beauty,
filling our dignity,
filling our soul only with every
ounce of energy to live our life
our life to the fullest it can be,
only gives us the matter of how
we live, how we rise, and how we fall
into the cycle or not.
Our deepest sympathies regard us
as the most engaging,
the most intriguing,
and the most knowledge
of what it feels like
to be in each other’s shoes.
Life rewards us for what
we need, what we want,
and what we gave to others.
Sometimes it takes one person,
one group,
one situation to help us
know that we are who we are
and everything happens for reasons
we may know or may find out before we reach our pinnacle
or after we’ve reached the pinnacle moving onto
the other side of what we have never imagined before.
Imagination is simple: Believe in anything you want
to believe, but ultimately believe with immense probability
and little suspicion that everything will happen the way
you want it to happen.
Love the beautiful person you are, love the people in your life,
and most definitely love the creative story you present
to the world.
Other than that, we own ourselves, our identity,
our intelligence, our creativity and imagination,
and definitely our experience with the world.

Let’s immeasurably succeed giving support to those who are struggling the most to succeed because in a nutshell, we our a large community split up into millions of smaller communities. In the end, we are a DIVERSE Human race with a NEURODIVERSE pathways and our different ways of living in the world. Splitting up the people and segregating into different societies while ultimately destroying cultures can not happen, but is happening anyway.
Whatever you are and wherever you come from, we still need to love! Life needs to fulfill it’s greatest vision of hope, love, and community connections. We connect as human beings, but we all disconnect at the same time. I am just needing to imagine a world where Autistic culture or any other culture can feel okay in a world where people are looking for a normal that does not exist. Because in the end, we all need to be more patient, tolerant, and accepting of everyone.

My challenge to you:

1) Help 1 person a day for 4 hours a day for 7 days
2) Don’t accept money or gifts, but pay it forward to another person to do the same as you
3) Teach someone to read, to write, to communicate effectively their way of communicating, or mentor what you have known while learning from them too
4) Spend the 8th day recouping, refueling, and know what you did to make a difference
5) write about it or draw a artistic expression of how it made you feel
6) Always remember what disability and ability does for our humanity, it creates it!!!
7) Then, tell organizations like Autism Speaks to do the same instead of doing what they do now in greed for their salaries, and fundraising for more research and raising their salaries.

Rest in Peace, our amazing talent, Robin Williams, you were an extraordinary talent who inspired me and so many others:)

Sorry it’s been so long since my last post…

OUT, J

Respecting and Recognizing Others is Important for Humanity

Identifying ourselves…

In order to identify ourselves, we have to remind ourselves what we do, where we came from, and who we are. The poll question on the side column of this website expresses just that. It has been asking you to figure out how you would want to identify yourself. Identity is important for our own Humanity and it is defined by diversity since we all identify ourselves differently. Identity is important!

Many able-bodied people try to define people with disabilities including Autistic people without the expressed consent from Disabled people themselves. This is unfair and does not express the meaning of someone’s life. Mostly, many people try to instill person first language on the disability community as well as pitying us to separate a part of who we are from our own humanity. Telling others how to identify themselves is not a right of any one to do to the disability community nor to any body else. It does not allow any one to identify themselves properly. Instead, it expresses the interest of eugenics to society like the Nazi’s did to many cultures in the 1930’s and early 1940’s.

Society is beginning to change, but we need more progress, a lot more progress. Society encourages eugenics as a means to decrease diversity. People don’t need this to be encouraged, but the mainstream media, corporations, and organizations like Autism Speaks does this all the time which influences the government who controls society. When are the majority of people going to understand that we have many different ways of identifying each other and that each label is a part of who we are? No one has a right to tell a person that they can not identify themselves in such a manner. Most people believe in the Medical Model of Disability which expresses to so many people that society needs to use person first language. However, to be able to truly identify yourself, you should be able to first accept everything about yourself including anything disability related.

No one should feel that their disability is seen as less than Human, after all we have many markers in our genetic make up which defines us as well as the fact that disability is a part of the human experience. There are many disabilities and mental health conditions that disable Humanity at any point in time, autism being one of many disabilities. It’s important to accept your own Humanity about what you can do and what you struggle doing on an everyday basis.

We identify not only ourselves, we also identify other people, animals, material things, and the environment we live in. We acquire different things in our life, but most importantly we always acquire different disabilities throughout our life. So, why does many people become ashamed of what makes them Human? Society has trouble comprehending and accepting every culture or religion that instills itself inside the world. We have different cultures and religions because everyone lives a certain way that creates their own unique way of life. No one has a right to tell any one that their own unique way of living and identifying themselves is wrong. People live in so many ways! In fact, if you watch the movie “Nell” with Jodie Foster and Liam Neeson from the late 1990’s, you’ll see an excellent portrayal of the fight to live your life the way you know how to and to be able to identify yourself.

The problem with society is that their is too much discourse and in a lot of times, violence, because the majority of people argue over what culture is better, who should be leading, and the amount of money people have trustfully earned for themselves to create a better society. Because of the discourse, people begin hurting each other or themselves. Accepting yourself and other people will create a better society where we begin living peacefully. By allowing everyone to live their life, we begin to embark on our quest to fulfill our missions without trying to take from others, without identifying other people with a different marker to identify themselves with, and/or without trying to hurt others including the youth who are the next generation. We need to start delivering a message that Humanity is a precious commodity and that we are all here for a reason. The children of today are our next generation for tomorrow, so we need to teach children that Humanity respects, accepts, does not hurt each other, and earn a living trustfully. No matter what, if we do it right, the children of today will create a better society where no one hurts, no one crosses another’s boundaries without permission, and everyone respects any one, otherwise society will not tolerate it!

Every culture is different which is why we have a whole world to live it in. No one can decide in the world to create a society in which diversity lacks. However, we have billions of people in this world who have a mission to live their life the way they know how to, and no one can make any one in this world feel like they are any less Human.

OUT, J