Fleeing the world of silence

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,

How can early childhood education centers be more inclusive to children with disabilities? I was asked to share my experience and give my suggestions with a few of my nonspeaking friends at Autism Inclusion Training for early childhood educators last year. This is my speech.

Good morning ladies, gentlemen, and non-binary members of the E.C.E. (early childhood education) community.

My name is William Tziavaras, and I am fleeing the world of silence with my speech device. Do you like my voice? I picked it myself for the times when I wish to sound like I know a lot. Harry is the name of my British voice. When I wish to sound “woke”, I use my hip hop voice, oddly named Saul.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,If you met me when I was in preschool you would have thought “Wow what a cute kid. It’s really too bad he doesn’t understand anything you say. It’s too bad he has autism and he is so low functioning. He always cries when we are about to do something fun and creates delays. It’s like he knows he won’t be a part of it and ruins it for everyone else. He’s really not interested. William needs something easier. He doesn’t understand.”

I am sure you get the picture. I heard these words and worse for so many years. Well, time was kind to me in that I learned a way to communicate while I was S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,still young. I don’t think I could’ve handled that any longer. It was the worst thing to hear from any of your caregivers.

Now that you’ve seen and heard me would you say any of those things? I hope not. You only needed to meet me now. Remember these things.

Please presume competence in every one of your students. This is the foundation of inclusion. Even if they show you nothing cognitively, you must only presume that their sensory and motor planning systems are the culprits in their impaired bodies and not their minds. They may very well understand as I did. I am interested in your training today because I believe it matters that you understand what is required to care for people with disabilities, especially those that affect speech and coordination of movement. These are functions of the motor cortex, agile and fragile as it is. The motor cortex is the handy brain wiring that has made my autism rather problematic. It is the command center for movement.

I am only here to offer my advice because I think that each and every one of you has the ability to give a child an opportunity to feel safe from abuse and to hear nice words from their caregiver. All a child ever really wants is to be loved.

Some children can’t access AAC for reliable communication and they are frustrated by the inability of family and caregivers to understand or interpret their needs. Imagine that you are the child that aims to speak but can’t, and everyone around them likes to complain that they are difficult. Have you ever had that happen?

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,

I am a living victim of abuse. And yet I know my abusers loved me but they didn’t know any better. They didn’t have Inclusion Training starring Future William. My only hope in presenting to you today is to let you know better. Yes, I am here for the sole purpose of pandering to your ability to see that a nonspeaking disabled child is not a cognitively disabled child.

We may not be able to show it without the proper communication system, but the knowledge, comprehension, and the ability to hear and feel the impact of the words being said about us are definitely there.

Please think about me when you see another child that doesn’t talk and doesn’t control his or her body like most people do. You may say that I am different than them because I am calm and well-behaved.

For one thing, I am different now thanks to learning to spell to communicate. Spelling cut out most of my frustrations. I don’t have to listen to people wildly guessing what makes me cry, which made things much worse.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,Secondly, I am different insofar as having fewer motor issues and less intrusive sensory experiences than some of my friends. But neither of these things has anything to do with intelligence. Having a dysregulated body is a quandary aimed to bring the nonspeaker to his or her lowest point of vertigo and it leads to false assumptions about their brains. People see a really disabled sense of coordination and assume that the corresponding nervous system connects to a disabled language comprehension system. My nervous system is a mess but my cognitive thoughts are not dependent on it to think.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,

William is seen above with his co-presenter Isaiah, at the inclusion training where he presented this speech

Thirdly, I am autistic, which means that my sensory experiences may affect a change in me at any time. That means that I may seem calm to you today but that is only because my sensory meter is riding on low. With each additional stimulus, I become more sensitive than without. Some of my friends live in a state of overwhelm. While this can be very beautiful, it can make it near impossible to function among people that don’t understand. Really it must be like being on some hallucinogens. A very nice high but not fun, especially if you are the only one.

So, when you see me today you are only seeing the best of me. Then again, I wrote this last night, and there is always a chance that you will get the worst most dysregulated William today.

So, how can an early (childhood) years center be more inclusive? Here are my suggestions:

  1. Include every student in all activities. If the activity has components that would overwhelm the senses of an autistic person, try to accommodate their needs In order for them to participate. Never force a situation.
  2. Encourage friendships between peers. It is imperative for each child to get to know the other.
  3. Never refer to non-disabled friends as “helpers”. Friends naturally help.
  4. During movie-watching time, if your autistic student prefers to move around or play or “stim” away from the group, always let them and assume that is how they enjoy watching movies.
  5. Always allow your students to energize themselves with self-stimulatory movement. They need this more than you need them to stop.
  6. Never let your students hear you talking about them unless you have positive things to say. Remember, we understand even if we can’t show it.
  7. I know it’s not easy to take care of “high supports needs” students. It’s even harder and more frustrating to be that student. Many of my meltdowns were started by things I overheard. Please be kind.
  8. Give your disabled students opportunities to practice purposeful motor activities. Not to try to normalize their play habits, only to help them regulate loose and frazzled nervous systems. They will feel very accomplished.
  9. Teach literacy and math, pre-school style, to all students. If they don’t look at you it doesn’t mean that they can’t hear you. Unless they are Deaf. Then they should probably be required to watch.

You all have the opportunity to be somebody that makes a difference in a disabled child’s life. I hope you take advantage of all you learn in this inclusion training. It has been a pleasure to see so many interested attendees. Thank you for listening.

S2C, Spelling to Communicate, nonspeaking, nonspeakers, Autism, I-ASC, Speller, nonverbal, RPM,

William Tziavaras is a comedian and songwriter attending full-time middle school.
 “My daycare was inclusive but all-inclusive schools need guidance.”

 

 

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through trainingeducationadvocacy and research I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C) with the hope that other methods of AAC using spelling or typing will join our association.

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