Going to the prom is every girl’s dream. A lot of the dreams I have are so difficult to achieve because my body is always making it so hard to do what I am trying to do. However, sometimes great opportunities come along and work out for me. One of these opportunities is the Night to Shine prom. I went on Friday and it was awesome!
A lot of the day was spent waiting with anticipation and excitement, which was so tough. Like many others I have the hardest time trying to contain my excitement. Butterflies make themselves busy in my stomach and my body tingles with nervous and awesome energy. So much of my nervousness was centered around meeting the person who would be my date and buddy for the night. No one is here to judge but my date and buddy last year was too old! I want to be me and the best way for me to do this is to make many connections with other lively people my age.
Many wonder what it is like to sit and not see other kids my age often since my school day is spent with my mom at home. This isn’t too bad for my sensitive nervous system but it’s awful for my social life! So many days I think about the social life that I miss out on by staying at home. Life is full of opportunities though and it is many times worth taking advantage of these opportunities whenever you can. My life is much richer when I am able to really live it.
I was nervous last year and thought my mom had made a big mistake in signing me up to go, but it was interesting to see the beautiful dresses on the gorgeous girls and the many tuxedos making the boys so handsome. In the end, it was an amazing night!
This year, having to stay calm throughout the day was not easy. Waiting is so hard! My body was spending time managing my emotions while my mind was thinking about the possibilities that the night might bring to my world. This excitement kind of got me too excited. Fortunately, I have more control over my emotions these days and I was able to reign in my body.
The moment I met my date and buddy the nervousness dissipated. There was her beautiful smile that set me in motion for a great connection. My smile had to be so huge because she came off immediately as genuinely kind. That was the moment I knew I could have the best time. And I did! I think that she did too.
I want to change the way that people see me, but see only the surface which is not the true me. People have to want to get to know the true me if they want to be in my life. Change is on the horizon this year and there is going to be a lot of great, given opportunities to see with the heart instead of with the mind. Being in mindspace instead of heartspace has had too many consequences for sensitive beings like me. It is hard to do the many things I want to do when I am too tired because the many lives on earth are at work trying to survive. The minds that are so hard to understand are sometimes the minds that have the most to offer but sharing what is in them has become too difficult in the shit hole world we are creating for ourselves. Where is the super life we should be creating for ourselves? Changing the course of our history has to happen now!
Graciela was invited by her friend, Mark Utter, to co-present with him at the AutCom conference in November. This is the transcript of their presentation.
The story of our lives before we had access to communication.
Graciela: It is a hard thing to learn to be your own advocate without having the ability to speak loudly. Advocacy can be so many different things to different people. A lot of my advocacy is related to my needs because many years went by without a way for me to advocate for myself because all of my words were getting too stuck in my mind.
My need to be in more control of my life went unmet for a long time. Many lives are still stuck in this horrible abyss of silence. Life is a struggle when it is covered in a blanket of loneliness and lost words that have no way out. I was living in this abyss of silence for ten years.
During this time many of the lovely people in my life were trying to have the great feeling in their hearts that I was not as bad off as the doctors said I was, but it is hard to listen to the experts while believing in the potential of your child who cannot speak much and is having a lot of other struggles.
Many parents get so starstruck by all of the experts and their assertions of incompetence and lifetime illness. A life cannot ever be what it is meant to be when it is seen through this lens of ignorance. Letting go of these ludicrous assumptions can be so hard for many parents.
Luckily my parents never stopped being open to my potential. Getting my freedom back from the hard ideas that I was not competent was the most amazing thing that has ever happened to me.
Mark: I have a body and mind connection disorder.
Before I had access to facilitated communication my living felt like I was on my own. Yet much attention was given to my body. If you can imagine being a glorified pet, that is what it was like.
I was in the world but experiencing it in my own way. People didn’t know I knew everything that was going on around me. I found it frustrating that people found me stupid, and I was not.
I am wondering if any one has questions for Graciela and me before we move on to talking about developing our communication skills.
The Joy of Accessing Communication
Graciela: My first lesson in learning how to work with a letter board went so well and almost had me in tears because I knew that it would make my life better. The hardest part was being great at it. I had many moments of despair when I was learning the ways of the letterboard. However, I was determined to persevere in order to be able to show my intelligence to everyone. It is what I had been wishing for and hoping for for so many years.
It is because of the time and intense practice that I have committed to my way of communicating that I am now able to be here doing this presentation. The many hours of hard work have been worth it.
Sometimes communication can still be a challenge. My body often acts one way while my mind has a totally different thought. Can you imagine this being your reality? It can be really difficult to get out my thoughts with my uncooperative body.
I need to get the people in my life to understand the difference between my loops that are just impulsive responses to stimuli in my environment versus the things I want to do or say. It is so hard for the people in my life to really easily learn the difference. Therefore, it is my responsibility to educate them and encourage them to think before they react or respond.
It is important for me to make my situation better if I can. It is not always easy to advocate for myself, but it is often necessary and makes me so much happier with my life.
Mark: Finding a form of communication has been a life saver.
It was, and still is, hard to work with new people.
It has happened that I have created a film about the importance of Facilitated Communication in my life that you can see at Vermont PBS’ ‘Made Here’ web site or get one of my copies from my laptop bag.
I am wondering if you all have questions for Graciela and me about learning how to use our forms of communication.
How Our Lives Have Changed Now That We Have Access to Communication
Graciela: It is awesome to do the things that I really want to do in my life now that I can communicate about these things. Many things in my life have changed for the better. The things that I have access to now have changed the trajectory of my life and have the potential to do the same for so many others.
Now that I am free from the steel bars of the prison of silence my days are full of education and social interaction that was not happening much before I had access to communication.
Mark: My work now is focused on young people who type to communicate and other people with disabilities.
Before I made the movie I thought it would liberate me. Oh I didn’t want to be someone with a disability but I am.
We have so much work to get done together to keep shifting the tides of society so we can be seen as important members.
Advocacy Tips and Reflections from the Superstars
Graciela: Because I am in the know about hard times that many like me have without access to communication, I make it one of my life’s goals to do whatever I can to help more people get access to great communication.
I think that without this lives will never be changed to help other prisoners inside their walls of silence have an opportunity to make their real selves shine.
Being in the limelight while advocating can be difficult because people like to criticize the many individuals who have it in them to do things that give the gift of life and freedom. Life is too short to listen to these naysayers. Instead it is necessary to listen to your heart. What is it telling you? What are you going to do with this information? Will you heed the call or ignore it?
My advocacy is just getting started but it is going to be much more than I can handle by myself. This is why it is important to have friends and a lot of really amazing allies on your side who are making a commitment to working together with you. It is also important to educate as many as you can when you can along the way.
Mark: It is essential for people to know how to say what they need and also to make changes that are hard but will make them stronger.
Let’s hear from you! What advocacy experiences and tips would you like to share?
Living in Georgia has been interesting for my family. My body loves the more laid back nature and the weather is not so bad after the summer heat cools down. One of the loveliest things about being here though is our community of non-speaking autistics and their families. I love this community and think it is awesome to get time together to interact and socialize with the communication support we need. The last gathering that we had was just for the sake of gathering together to communicate and have some fun.
It is awesome to be in community with others that are the same as you. Changing the minds of neurotypicals to understand that we are not so different can be hard to do. Being in the community as the one who stands out is tiring. Therefore it is amazing to be given the chance to be in the same space with others who have the same challenges.
It is wonderful to see the community have the opportunity to come together to work on getting life out in the challenging-to-be-in world. It was hard to have to wait for so long for our many desires for being in community with each other with the support that we need in order to see one another in the same space . Having to communicate in an alternative way is not easy to think through in social situations. Having the chance to get some time to practice without feeling the intense pressure of time and typical expectations made it much easier for us to enjoy the conversations. Giving this a chance more often would make our hearts happy.
It is because of the hard work of a few that our community has these opportunities. I think that we need to show our gratitude to those with the vision and determination to make our lives better. I think that it is about time to have some sort of award for those who are making it their goal to do whatever they can to see and support the beauty and competency in each one of us. I want to create this award today. It is going to be named the Life Giver award.
I am challenging each one of you to hand out many of these awards to those who are truly your Life Givers. I would like to make my parents the first official recipients. It is hard to describe what it is like to have them for parents, but it is many times life giving to be their daughter.
It is awesome to say thank you to the people who are the hardest working in your life. I want to encourage you to accept my beautiful challenge to send the Life Givers in your life some sweet love straight from the heart.
It is awesome to be in love! Getting to celebrate my sweet16 with my boyfriend in tow was incredible. He is the most wonderful person to me. The blog post below will give you some sense of our healing love.
G: Awesome to spend time with my wonderful boyfriend!
J: My love gets to be caringly celebrated today and I get to be with her. Too awesome!
G: I want to read the many love songs that are written in my heart to you. My heart is full each day that we have together.
J: Can we be any more gushy? Can we be any cuter? I can’t believe we are so lucky.
G: Have to agree! A lot of the things that we get to experience are so long sought after by many but it is hard to find the one that your destiny is intertwined with and with whom you are meant to be.
J: I love you too much! Joy is being intertwined with and creating with you. Our future is very bright.
K (aka Jordyn’s mom): Is this a blog?
J: She started it.
G: I think it is awesome to read the blogs that take the shared idea of love and can expand on it.
K: Do you want to add or expand on this blog?
G: No.
J: No. Just write another one for later
G: Yes. Good idea to do it now.
K: First you need title.
J: Last one should be called “Good to Be Mushy”
G: I love Jordyn. I love it.
To find out more about Jordyn, please visit https://jordynsrockyjourney.wordpress.com
Graciela and her friend/caregiver, Tommi, started reading the book Stroke of Insight this past weekend. After a few pages, Graciela had her own “stroke of insight” and was eager to share her thoughts with everyone. At the link below you can find a timelapse video of Graciela’s process writing this blog post together with Tommi.
I can truly say that I’m mind blown! Tommi and I are reading the story of a true survivor – the neuroanatomist who suffered a severe stroke but in the process had her own “stroke” of insight!
Every amazing human is basically genetically identical. I share 99.99% of my genetic design with every individual I will ever meet. I trouble you all with a huge challenge:
I challenge the world to look through our external differences and to decide to trust in the love that we so have genetically coded in the depths of our DNA. Just an example – I totally communicate in an atypical, out of this world, most difficult way! To even express THIS sentiment I have to conquer the constant urges emotions can hurl at me!
Do you even imagine how HORRIBLE it can feel to realize that the world sees the autism I truthfully value as a tiny mutation that deems me as genetically inferior to the typical person?
Can I interest you a little bit further?
I, because of the wonderful autism, can truly see each time that
you obviously stare at me,
whisper to your friends about me,
decide that MY BODY is too disruptive,
send glares at me when my loud mouth doesn’t get quiet,
or you try so hard to pretend I’m INVISIBLE!
I trust that you, the so fascinated consumer, will try to take this sweet ol’ girl’s challenge seriously!!! I’m sincerely asking for you to make the too damn important shift in thinking!! I am almost your genetically identical twin sister! I just so happen to be autistic as well!
I think there’s so much to learn from the so crazy thing the world calls DNA, don’t you?
We have to listen to a lot of the songs that are playing in our hearts. Love is the melody that usually makes us move towards one another. When our great heartsongs are too shut down by stress or hard times in life, good music is hard to make.
A lot of the stresses are not necessary but working on leaving them behind is not easy to do. It is much easier to work on getting through the stress than it is to stop it from invading in the first place.
We have to start working through some of our life’s greatest challenges in order to make our missions have the impact that they are meant to have.
My work is in these things because many of these massive missions that people are supposed to have the capacity to do are not happening. Love is the way for our hearts to heal.
Finding the way through life as an autistic takes time. When I think about my life with autism so many different emotions emerge. The first emotion is hard to define because no word exists to give us the sense of this emotion. Having ways to talk about feelings makes life easier, but having no words for this hard feeling has been tough. The feeling feels great and bad at the same time. With being autistic there has been so much that has been hard to handle but there is also much that I love about my mind that I think is due to my autism. Having to live between these two dichotomies is not easy.
Most days I have to try to really work hard to stay focused on the positive parts of being awesomely autistic. If only others could see the awesomeness that is such a huge part of me, the life I’m living would be so much better. But the reality is that other people find it hard to look past my tormented body and do not get the opportunity to engage with the real me. I am,therefore, worth nothing to many. When this is the daily thought that runs through your mind it’s challenging to stay positive.
When being so misunderstood the thing that frees me from my worries is great academic work that makes me become more regulated and helps me share my intelligence. Many days it is becoming tough because the ideas that I want to share with the world are not getting out because the work that I need to do to get them out is daunting. Being in my body is many days too upsetting. Live like me for a few minutes and you would think that you had been given the worst life. Having to save your pride from getting the share of people’s stares is not so simple.
Autism is not all bad though. Autism is a lot of the reason why I have a lot of the amazing intelligence that I have. Life with a mind like mine is not dull! A lot of the makings of my intelligence can be traced back to the amazing mom I have who always had me interested and involved in the world. Can you have the best being on the planet on your side without being enriched? Are these things embarrassing to you, mom?
Getting the world view that all of us are equal has given me the feeling that I matter! We should all have the sense that getting treated as the humans that we are always takes precedent.
A lot of the things that are the hardest for me are so easy for others. For example having the ability to talk to another person comes so easily to most but it is almost impossible for me. Another thing that is not easy for me is getting my body coordinated and strong enough to make my athletic dreams come true. A lot of the challenges I must overcome so that I can reach my goals are massive to me. But we must all try to face the things that hold us back. The things that I have accomplished with the right support have been incredible! The future is going to be so much brighter because I can access my words through pointing to letters in order to get out my intelligence and my ideas.
Open your minds to the awesome things I have to share and I think that life will be a lot better for all of us.
Graciela’s reflections on the second chapter of Life in Letters.
The thing that I think is my most interesting thing to make the people that engage with me really work to understand is the trapped mind that is in my totally out-to-take-control body.
The thing that works against me the most is my speech. What is making the many wrong words tumble out of my mouth is what is often referred to as apraxia but it is easily mistaken for what most would refer to as speech. This means that words that I did not intend to say are often thought to be intentional. This is usually the toughest thing to have to explain to people about me. When the words I say are interpreted wrongly there are so many words I think to say but I have such a hard time getting them out.
It is helpful when people ignore my nonsense words and try to listen to my communicative intent. I want to talk to you and am trying to say this! Learning to see past the surface that is often saying the words that make no sense takes interest and patience. It is worth it though. Try not to overthink it and try to look past the surface.
Graciela and I just started reading Life in Letters by Lia Asssimakopoulos. Graciela was interviewed for the chapter on sibling relationships and she knows many of the other self advocates who participated in this project. Contributions made to the first chapter titled “Don’t Judge A Book By Its Cover” were made by a young boy named Calvin. Here are Graciela’s reflections….
The things that I experience without the really magnificent understanding that I need from others have had the most devastating impact on me. It is hard to make the world think differently about having the awesome mind that I have with a hard to handle body in control. I think that many people should see through the facade of the crazy body to the thinking, intelligent, interesting to know girl that lies inside. I need to see that we think of the really important need that each one of us has which is the need for human connection.
Hopefully she will choose to share more of her reflections as we continue to make our way through the book!
