Having the Heart Shine This Year

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.

James Berry’s What To Do With A Variation

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

My Challenges

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.

Reflections

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

Working With Us and Getting It Right

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.

 

 

 

 

Parents, Listen Up

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

Love Goes ‘Round the World Easily When It Is True, Heartfelt Love

 


Learning to love is not hard for my mom’s great friends, Holly and Mike. This blog post is dedicated to them. 

It is amazing to talk to lovely people who see the personhood in me. I think it is challenging for many to see the personhood in me because it is hard to look beneath the surface to see the many wonderful qualities given to me for my beautiful soul to use to see into the souls of others.

What is interesting is that my soul can connect with the soul of another person easily if the person is full of love for himself and others.

When this connection happens, it is magical because our souls immediately communicate love.

There is a lot of need for this deep connection and love in the world today.

Your heart only needs to stay open and willing to try to love greatly. Hopefully this speaks to you and it encourages you to make more connections of the soul.

Does Self Love Matter?

co-written by Jordyn Pallet (lines in regular font) and Graciela (lines in italics)
You can find more of Jordyn’s words at https://jordynsrockyjourney.wordpress.com 

 

How do we bring more self-love to those we encounter?  It’s not an easy task.  Just loving people is not enough for them to give up being self-deprecating.  Strong self-love works for those who can stop seeing their flaws in order to understand the terrific beauty hidden underneath.

Joy can be found in what each difference from the “norm” brings to the tapestry of humanity.  When we love ourselves deeply we can really spread that love to others.  By being someone so accepting of our own differences, we demonstrate a state of such pure self-love, that others can’t help but get over themselves.

Try to start practicing this today, instead of taking yourself down the road too often traveled of not seeing the terrific beauty in yourself.  Or you can get yourself a bigger problem to solve and use your differences as assets.  Or, if the problem is big enough – like bringing peace to the planet – then you can’t solve it without first bringing peace to yourself.

It is not easy to get out of your own way sometimes, but it is so worth trying so that our love knows no boundaries.  What if our World was filled with that kind of pure love?  Then we would be in the World so filled with truth and joy, and our lives would be so much happier.

Time to Fight for My Rights

Graciela has been taking a Civil Rights in the United States class this semester. The final lesson was on disability rights. Here is her reflection on this lesson and on the class in general. 
Can you have the mind of a savant inside the body of someone who is so motorically challenged that she can hardly speak her own mind? Yes, it is possible! I am this girl that has the most amazing mind that is trapped inside the most naughty body. This is my story of disability and my trying to get access to the many rights that I should have but don’t. 
 
The lessons that we have done in this class have made me really understand that to think that you are going to succeed in the struggle to stand up for your rights without much effort is so foolish. It is hard to break through the societal and cultural barriers that have been in place for many years in this country. Challenging the status quo is never easy, but it is often important and inevitable. That we should stay quiet in these moments in which injustices occur does not help the country progress. 
 
It is not that inviting to make hard decisions about stepping into the ring to fight injustice because injustice often wins. However, when you are called to action then it is hard to say no. When I made my decision to try to work on these issues that impact me and other non speaking autistics it was the moment that changed the trajectory of my life and sent me on my quest to try to stop being so misunderstood. 
 
When it is challenging to use your speech to communicate there is often a lot of misunderstanding in regards to the cognition of the individual. This misunderstanding often continues for years. Trying to be happy with how many perceive you is not easy and often the frustration becomes too much. 
 
I speak from experience. So many years of my life were spent being misunderstood. Sometimes I would break through my silence to show my true capabilities. However, my speech is highly inconsistent. To try to sort through it to see the specks of brilliance is not an easy task. 
 
There were so many days when I thought I would have to succumb to a life of sounds that did not amount to real communication. Having to accept this life was not easy for me. My emotional fatigue left me too exhausted. Having to work through so many years of trauma from being understood in the wrong way by so many experts that claim to know a lot more about autistics than actual autistics do has been exasperating and has left its mark on my tender psyche. 
 
Getting the opportunity to live the life that I want to make for myself is not going to be easy. There are so many obstacles in the way. This is only the beginning of my journey but it has already been so tough to get more access to the education I deserve. I have not been able to get the support that my body must have in order to access the curriculum that I am cognitively capable of thinking through. 
 
In the past, challenges with my speaking made it impossible for my teachers to understand the quality of my thinking. This was intensifying my frustration day by day. Many years of this aggravated my thinking that I was the one who was incompetent and understood less than my teachers. However, I managed to hope for a release from the prison where I had been trapped. 
 
The moment finally came when we found ourselves in Texas learning to really set me free through opening many doors to communication, education and access. I thought I was having a dream! Many hours of the hardest work I have ever done to date have led to what I am capable of today. 
 
Things have been looking up for me, but I still have more work to do in order to access the dreams I have and the words I have to share with the world. When it is possible to dream it, it is possible to make the dream come true. However, I will need more support than most to live out my wildest dreams. Having to depend on others to help me is not easy to accept but this is my earthbound spirit’s reality. It is not going to stop me from realizing my dreams. Without support I would be imprisoned again. I do not want this to ever happen again because the freedom I now enjoy is too lovely to give up. 
 
Doing this class has helped me have more courage to speak up for myself and to think about other ways I can advocate for my rights. Advocacy is tough work! Many people become too drained by the demands of the work, but I want to stick with it because I can tap into a magnificent source of tireless energy.  When I make a name like Graciela stand out in the world of mathematics, then I will know that my hard work paid off. Many mathematicians have had the support and mentorship they needed to succeed. I am hoping I am as fortunate.