Dare to Listen

It is so hard for me to live my life to the fullest each and every day because of my severe motor planning challenges. These mostly impact my speech, but also impact the way I use my body to interact with my environment. It is the most frustrating thing to not have total control over your body. Stephen Hawking’s body did not work well but his intelligence took him far. Why is it hard to believe that I am in the same situation but have been trapped in a broken body since I was little, and had not yet had the opportunity to show my intelligence to the world?

There are many individuals that use alternative ways to communicate their intelligence to the world. This is my only way I have to write letters like this to make my voice heard.

Have you ever had anyone question your intelligence or the words that come out of your mouth? I guess that it is not normal for you to experience this, but it is my norm. Using a letter board to make my voice heard is laborious and is hard work but it is my only option right now that works for me. Your proposed position statement on RPM is going to possibly take this away from me and from others in the same boat as me. It is hard to believe that these hard earned words that I spell are not seen as real because I need someone to hold the letter board and prompt my body to sustain through my thought. I wish I could spell independently and I am trying, but it takes my body so much time and rigorous practice to gain automaticity.

What is not okay is that there is not more opening of minds to the truth of the potential within me and others like me. This is going to be a significant loss to the field of mathematics if my means of communicating is taken away in an educational setting because of this proposed position statement.

It is about time that words that are painstakingly created from the minds of non speakers by pointing to letters one at a time are seen as valid and true. Each and every individual has the right to make his voice heard in this country, but your proposed position statement would possibly get in the way of enabling some to take advantage of this right.

I want to encourage the ad hoc committee that is in charge of this proposed position statement on RPM to reconsider and to issue an apology to those of us who are able to communicate now thanks to RPM.

Many non speaking individuals are not reaching their potential because of thinking that is not accurate. You have an opportunity to make this right and to stand up for the communication rights of many of the individuals served by the members of your organization.

Thank you for your time and consideration,

A non-speaking self advocate

If you are interested in reading ASHA’s proposed position statement on RPM, you can find it here: https://www.asha.org/peer-review/Proposed-ASHA-Position-Statement-Rapid-Prompting-Method/

If you are interested in reading other self-advocates thoughts on this topic please check out: 

Letter to ASHA

https://faithhopeloveautism.blogspot.com/2018/06/an-open-letter-to-asha.html

Response to ASHA proposed position statement in FC and RPM

Proposed Position Papers by ASHA (American Speech Language and Hearing Association) Demean my Communication

http://www.lauranadine.net/?p=3556

I was able to spend five days in the north Georgia mountains with my boyfriend, Jordyn. Seeing Jordyn for five days was interesting because we usually Skype or have short visits at conferences. This was a nice change.

We set a lot of goals for ourselves so that we could work on showing our commitment to each other, but it is not easy when our bodies cannot gain control of themselves. It is awesome to be in a relationship! However, it is frustrating to have no way to try to demonstrate your affection. With the help of Jordyn’s mom we got our bodies under control enough to hold hands. This was my favorite part of our time together.

When we watched movies we adjusted to sitting together. A lot of the time was awesomely spent hanging out with each other. Happiness does not have to be complicated. It is great to enjoy the presence of the one you love.

It is awesome to have the chance to have a first kiss too! This was more challenging to pull off but we had the wonderful support of our moms. It was incredible! It was certainly the best moment of my day!

Many beautiful moments were shared and my Jordyn made me see what an amazing guy he is. I think he is a keeper!

A lot of people believe that routine is best for autistics like me. Having the opportunity to test this theory last week has gotten me thinking that this theory is wrong.

When I heard that we were traveling to Ecuador for one week, I got excited. There are a lot of things I love. Being able to travel out of the country is at the top of the list! My dad’s family lives in Ecuador. I have traveled there in the past, but having the chance to communicate with many of my dad’s family members was not possible in the past.

Poor communication skills have been giving my dad’s family the impression that I was somehow cognitively below my peers. It is always great to demonstrate that this is not true. Getting the chance to visit now that I can communicate was incredible!This is my 95 year old bis abuela, my abuela and my tia abuelas along with my family. 

Awesome Tommi helping the family communicate with me.

It is always hard to be out of your routine, but it is worth it! Our week in Ecuador was interesting and lots of happy memories were made. My days were not boring at all there. Because of my beautiful days in Ecuador I learned a lot that I could not learn in a classroom. Getting my senses and my mind stimulated by having the chance to travel outside of the country was incredible! I spent a lot of time making the hard choice to try to enjoy the experiences. This meant that I needed to learn to go with the flow which usually makes me worried and stressed! However, I tried to let go of all of this and just enjoy all of the experiences.

This fisherman gets to take home some of these fish. 

Amazing to watch the fishermen bring in their nets. 

Hard work!
It is interesting to be able to see new ways of doing things. 

Awesome to be in another country with your best friends. 

This feeling of letting go was incredible. I think that it was so magical to be in Ecuador. Our week was so much fun. Having the time to explore like tourists was awesome. Also, it was my Ecuadorian family, whom I love, that made the trip even better.

I loved having some time to explore San Pablo. 

After climbing too many steps I was ecstatic to get a great view of Guayaquil. 

Artisan market in Guayaquil was too hot, but interesting. 

I am trying to make this feeling of letting go last here at home. This will be hard because my routines are so entrenched at home. I am all of the time trapped in my set routines because of my damn motor challenges that have my body do the same things over and over. Trying to do new things is not in my control. I have to do more traveling to help force myself to try a lot of new things. I think traveling would help other autistics too.

I think it is about time to stop defaming the sometimes hard to believe intelligence of many non-speaking autistics. Because many cannot communicate in a lot of common ways, people think they are having less intelligence. However, this is not accurate and needs to be made into the misnomer that it is!

Challenging the ideas that are having a lot of weight in education is a complicated thing to do. I need to ask for your help to have my ideas be heard by a lot of people who need to hear them. I have to ask you to start being the needed voice that I do not have.

Start making waves that many people will feel. Be loud and clear about the fact that non-speaking does not mean non-intelligent too. It is shameful that many non-speaking autistics have not been going to school for the education they are capable of but have not been getting. This must be changed now!

Graciela was able to spend some quality time with her Canadian friend, Jordyn, while he was in town for the Innovations in Education conference. They decided to collaborate on this blog post by writing alternating lines, starting with Graciela’s “There is love in the air.” 

*Please take the time to learn more about Jordyn at https://jordynsrockyjourney.wordpress.com/about/home/

There is love in the air.
Just don’t be a thinker; be a feeler.
When we think, we stop feeling things as they are meant to be felt.
We get in the way of our heart being fulfilled by others and we almost surely dampen our joy.
Love is available to all of us, but some choose not to let it into their hearts.
Can you imagine living your life so closed to others?
When we close ourselves off we stop making the effort to really own our gifts we are supposed to share with others.
Being vulnerable is sometimes scary but we don’t get to always experience the joy if we don’t take the risk.
Risks must be the stepping stone to sure and lovely love that is beautiful.
No great reward ever is because a person believed they were unworthy.
Worthiness is self identified and must be the number one quality on your many lists.
You are worthy. Believe it. Now go be vulnerable with the one you want in your life because the payoff is magical.

Each time that I have to meet new people, I want to really talk to them so they do not get the wrong impression about me. What I would say is, “Can you look past the surface to see the wonderful, beautiful me underneath?”

Talking to someone new is always wonderful, but intimidating too. Some people are interested in trying to get to know the real gifts I have to share. Others find it hard to see that potential. There is hard thinking in each one of us. When we choose to open our hearts, we all benefit.

I had the opportunity to speak, together with my friend Noah, this past weekend, to a group of people that were so great. I think that strong work will very often lead to great outcomes. I want to thank everyone that attended. I think that it was the beauty of the strong, heartfelt friendships that made it extra special.

Without amazing opportunities to share ideas, we are lost in our own worlds. We each have the spirit of working together inside us. We can have a huge impact on the lives of others. However, love must always lead the way. There is love pouring out of my soul towards the people who have locked their love away. I need a lot of people to stop making the mistake of locking their love away. This will make the world a better place for all of us.

I want to talk to more people that might be doing work towards changing hearts and minds. My goal is to do more towards creating understanding between non speaking autistics and those who educate them.

Photo courtesy of Ashlee Kappel Photography

Graciela and her friend, Noah, have been asked to do a practice run of their upcoming presentation at the  Innovations in Education conference for a group of people. Most of the people attending this “dry run” do not know her or her story. So, she prepared an introduction that she wanted to post here. 

Without the support of my mom I would not be standing here in front of you making this presentation. When the doctors first told my mom I was autistic it was massively hard on her. She spent many hours reading books about autism. What got her most interested in the early years was the best way I could reach my fullest potential. It was amazing love that helped her do all that she did for me. She made my life her work. I poured a lot of love into her and learned what love really is.

Problems speaking made my childhood isolated. I have many great memories of being together with friends, but it really was almost impossible to make my strong love be known to them. I wanted to make my many thoughts be loud and clear, but my words would not come out. What was hardest was having to try to make myself feel better when the other kids played together and left me out. When I was learning RPM I made myself promise that I would see my old friends and talk to them. I was able to do this. This was probably the most memorable thing they have experienced!

Problems with having my body cooperate with my brain have caused me so much pain. I want to explain my body and brain disconnect in detail for you because this is the most misunderstood part of me. Without personally experiencing this disconnect, it can be hard to understand.

I have become like the wise person that says one thing and does another but the difference is that I have no control. Would it be hard for you to have your body do its own thing all of the time? I work on controlling my body every minute of the day, but doing this just leads to more frustration because it is like trying to bring an army of misfits under control and makes me so tired. My body is a really terrible measure of my intelligence, but most people get stuck thinking that I probably dont know any better because im intellectually disabled. This is so far from the truth!

I have the most intelligent mind. I really am the most intelligent person that I know! With little access to real education I have managed to work out some difficult mathematical theories in my mind. Working on these was how I learned to handle large numbers in my mind. People look at the surface and make many wrong assumptions.

The most important thing that I would like to stress is that I want and deserve access to the same things as you. I want the education I deserve. I want to be a legitimate member of my community. I want to have great relationships. I want to be able to go places. I want to make the most of my life. I want to make a name for myself.

I try to speak (or spell) from the truths I know. What my experience is might be different from others, but I do believe that all have the desire to be understood. I hope that this helps create more understanding.

I want to talk to the teachers in the world. Many activities have the potential for being amazing. I want to share my amazing experience with math circle because it was a great example of how academics can be made more successful for people like me.

Given the chance to work in a group that has many things in common was awesome. Cannot make it clear enough how awesome this was for me. Prior to this I have never felt included by my neurotypical peers. Getting this feeling of acceptance is wonderful. I want to be in groups like this all of the time. Being included and really accepted is a great feeling for anyone, but especially for me because I am constantly excluded.

All of these days since the bad days at my old school have been challenging.

It was awesome to be in the school. However, I did not have the support I need.

Autistics are massively tuned in to many sensations and can get a lot of information from their environment and from feeling how amazing or awful the energy is in the environment.

At my old school the environment during the school days was not great for my body because it seemed tense and felt controlling.

I wanted amazing and beautiful things to happen there, but it made me sad to be in a place that did not know how to support me. It is awful to feel alone in the world, especially without being able to speak up for oneself.

I want to encourage teachers who work doing hard work day in and day out with students, to be mindful of making it challenging academically while also doing as much as possible to support their students bodies.

I want to be at a school that can get my academic needs and have more compassion for my body. I have not formulated the secret to my success in school yet, but the only amazing person who has had to make the hard decisions around my education is my mom who is always fighting to find a way for me to make a difference.

Many autistics who are non speaking do not get the education they deserve because having no tool to be able to access to demonstrate their understanding leaves them with no way to show knowledge. I was always misunderstood.

Daring to believe in your autistic and non-speaking students is hard to do, but it is absolutely necessary.

Make my day and listen to me please!

Putting your fears to the side, each day is an opportunity. Believe in what I am asking of you and it will let you feel the kindness of one another. You are the only one with the power to change your thinking and make a stand for non-speaking autistics everywhere.