Dare to Listen

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!

The things I want to say are not easy to hear but they have to be said. This life we have been given is not ours to destroy. It is challenging to see how our decisions to spend so much energy in being spiteful to one another instead of making space for love and true acceptance take a huge toll on all of us.

Our hearts are spending too much time in deep misery instead of being deep in love. The way to move through this is to see the humanity in one another. Try to look past the surface to the soul that lies underneath. There is more to each one of us that we can easily overlook when we are too wrapped up in our own minds.

Our hearts have the capacity for so much love. In the new year make the resolution to shine this love from the heart as often as possible.

Today, in History, Graciela had to read James Berry’s poem What To Do With A Variation and was then asked to write another stanza describing how she would like her community to see differences today. Graciela’s additional stanza is in italics. 

What do we do with a difference?
Do we stand and discuss its oddity
or do we ignore it?

Do we shut our eyes to it
or poke it with a stick?
Do we clobber it to death?

Do we move around it in rage
and enlist the rage of others?
Do we will it to go away?

Do we look at it in awe
or purely in wonderment?
Do we work for it to disappear?

Do we pass it stealthily
or change route away from it?
Do we will it to become like ourselves?

What do we do with a difference?
Do we communicate to it,
let application acknowledge it
for barriers to fall down?

Differences have the blame

the shame

the pain 

Each has a difference

and some have more

Why don’t we leave our differences 

at the door

Everyone is different.

Working towards acceptance

should be 

our goal

 

It is challenging to try to start being the joyful beings we are meant to be. Can we listen to Jordyn’s wise words? Hearts are meant for love. Do not give up on love!

Human Nature

 

I have many days when I am working so hard to get through the day without letting my challenges have the share of the day. Challenges in my life are constantly vying for control of my many days. Quietly they sometimes appear out of nowhere. Other days they have loud noises and sounds going off in my mind as they arrive.

These challenges make my life hard to bear most days. It is like being caught in a wave of emotion that can never get to shore. Having to ride the wave is so tiring to do day after day! My emotions are not easy to work through because having the energy to stop the wave is not easy to muster without losing control.

I think that it is not so simple for people like me to change their emotions. Given outside support it is easier but it is much better if there is work done to help the body learn to help itself. I have to say that yoga has helped me so much because I can control my body more through the movements and through the deep breathing that I do. I like the really great yoga teacher that I have too. She is so calming. When I can use the breaths that I have practiced in yoga I think it really helps me calm down.

Intelligent Lives today hosted a webinar with a lot of other disabled, intelligent individuals each trying to participate in the way that worked for them. Many individuals made the comments in the chat very interesting. Changing the narrative around intelligence is challenging to do but I think it is great that we can have some ways to try. The webinar challenged me to think about how I want to live my life. Being disabled is not my excuse for not living how I want to live. Is it in the traditions of my awesome ancestors to have the mindset of many of the best athletes in the world? In my family it is impossible to give up. I think I will make them very proud.

This is the I Am poem that I wrote as part of the Intelligent Lives webinar:

I am on my way.
I wonder if I will ever be more independent.
I hear being in the world takes a lot of work.
I see my future taking on my dreams.
I want more autistics to find their way to their freedom.
I am more than my autism.
I understand it all.
I say very little with my speech.
I dream of changing my life.
I try to be the one that is kind to others.
I hope many people hear my voice.
I am intelligent and trying to start with me.

To learn more about Intelligent Lives visit https://intelligentlives.org

I think learning to control our mind is so tough and demands much determination and effort. It is even harder to do this when you cannot make your body cooperate with the thinking that is always happening in your brilliant mind. Trying to show this intricate thinking is the inevitable struggle. Fighting through the frustration becomes exhausting. Could you survive this?

Being in our shoes is tough. However, it is because of the strong support we get from others that we are able to forge more solid connections in our mixed up wiring.

I think one of the most challenging things about supporting our bodies well is really understanding the disconnect between our thinking brains and our out of control bodies. Our actions are often misinterpreted. Can you imagine trying to talk about something important but not being able to speak the words in your mind and from your heart? Imagine wanting to have a great time with friends but not being able to get your body to interact in the way you want it to. Think about being in pain and feeling miserable but not having some way to convey this to those who care for you.

Because of our brains not connecting well with our bodies, there is a lot of misunderstanding. It is not easy to look beyond the body in order to see the intelligence underneath, but it is so important for everyone to start seeing us as we truly are: cognitively capable, but motor impaired.

Here is what you can do to support our bodies:

Just always be open to the ideas that I am sharing with you because they are coming from an expert in the field who has more experience than you do.

Challenge yourself to open your mind to the endless potential within yourself and within the person you are supporting.

Do not stop believing in the person you are supporting.

Challenge those who do not value the potential in the person you are supporting.

Work towards creating opportunities for attention to be given in a positive way to the person you are supporting.

Remember that people at large really want to try to engage and interact but often do not know how to get the conversation started.

Love what you do both in the work you are doing and the person you are doing it with.

Try to help the person that you are supporting work on their self determined goals.

Start having fun and always challenge the status quo.

 

 

 

 

This is not only for parents, but it is the parents that really need to hear this. 

Dear Parents,

Try to work on our most problematic, life inhibiting, many layered behaviors that are not purposeful but are impulse driven. What I mean is that we often engage in repetitive loops of behaviors that seem intentional on the surface, but are not intentional at all. What is really working to confuse you is that our bodies look intentional but our brains are shouting out, “Stop listening to my body!”.

When our bodies outshine our brains, it is maddening. These incidents work against us every time. People often think that we want to do these things, but our goal is to work on purposeful motor activities in order to have better control of our bodies. Without opportunities for tireless practice in reigning in our impulses, there is not much hope for us to live in the way we want to live with our minds being in control of our bodies.

Doing the same things over and over feels good. It is hard to stop this behavior when there is something so gratifying about it. This is how we get hooked. However, after some time, the gratification stops and the behavior remains. This is when we need your help learning how to break the motor loop that has made its way into our habits. The things that we get stuck on are typically the things we are trying to stop ourselves from doing. The confusion lies in the fact that our bodies seem so intentional.

Working on purposeful motor movements makes such a difference. It is not hard to do, but it is necessary to do it often. Stop expecting us to make these changes on our own. We need your help! Getting help is challenging when you can’t ask for it. So, parents, you have to be on the lookout for these repetitive behaviors that are getting on our nerves.

Love,

Graciela