What more do they want from a Speller?

Nonspeakers don't owe us a thing...we owe them apologies.

Some time ago, I was watching a video of a Deaf person signing and another was interpreting their words. This is something I seen a million times before. Both in real life and on video. I think what made this video stick out to me was I actually went to read the comments. I don’t know what it was I was looking for but I read the anyway.

Nothing stuck out. I got what I needed from the video. And I moved on.

About three weeks later I was looking through content of Nonspeakers and their CRPs (communication and regulation partner). Some were static posts with words only, others were infographics, and a few were videos. I spent some time going through it all. Absorbing all that I could in an effort to help my son on his journey with spelling. If there were comments on these shares, I read those.

This is when I felt like the comment section on the video of the Deaf person and their interpreter began to make some important connections for me.

What I saw was no one questioned the legitimacy of the deaf person’s words. No one felt as though having another person interpret their signs for the rest of the world was in some way abusive or manipulative. They felt as though that person was there to help them get their message out.

This is in stark contrast to what I see when it comes to Nonspeakers and their CRPs. The value of the communication is diminished. The Nonspeaker is not believed to be sharing their true thoughts. It is assumed that they should be typing independently if it is to be believed that these are to believed to be their words.

This angers me in so many ways. But really, it just makes me sad. Sad for my son that he will have to grow up in a world that won’t value his communication because they didn’t take the time to understand who he is as a person and how autism itself courses through his body.

I have watched Nonspeakers literally use their own arms, hands, and fingers to point at the letters and many people will still doubt those are their thoughts. I have sat through the rants of many speech therapists who will tell me that “there’s no evidence to support this communicative style.” Yeah, well where was the evidence that my son was incapable of learning to communicate through speech therapy when those within your profession wrote my son off long before they even gave him a shot?

We have had dozens of evaluations over the course of my son’s life. He has had three speech therapists. We were told my son was “too severe” to work with. We were told they “didn’t know how to use his app (proloquo2go).” We were told that he “needed to be in ABA therapy to work on his behaviors before he could do speech therapy.” We were told that “he doesn’t understand what we are trying to do with him.”

Over and over and over again.

By speech therapists. The ones that are supposed to help those like my son. The ones that so many within this community feel is an acceptable alternative to therapies they take issue with.

Our family is not the only family who has gone through this. Not the first. Won’t be the last.

I remember one time I shared on social media that I felt like my son was frustrated with image based communication apps like proloquo2go. I felt like there was only so much one could say with pictures. The pushback I got from that post from so many speech therapists was astounding. I got several of the “you are trying to convince your followers to abandon speech services for their children” and “think about the influence you have” messages.

Seriously?

I spoke my truth. I spoke to what I saw in my child. I spoke to why I felt the way I did. And I am not going to be wrong about our experiences. I spend many days trying to get as close as I can to my son’s experience and I am literally frustrated with how challenging it is to convey my true thoughts and feelings with only pictures.

There’s a reason these apps have keyboards!

What bothers me so much is that I am doing everything I can to help my child and we have encountered professionals who won’t.

When I look at these two different videos and gauge the responses of each I wonder what is going on? Many deaf people do not speak, but for some reason the presence of the interpreter isn’t seen as invalid. I thought it was a perception of intellect thing. Like, society knows that deaf people are still aware of the world around them and capable of learning, they just cannot hear (or cannot hear well). But then I was like, maybe that is part of the reason, but there are many deaf people who face what my son has in terms of assuming they are incapable of thought and/or learning because they do not speak. So, that can’t be the sole reason.

It’s complicated and it’s layered. But it definitely should be noted that if we can find the validity in sign language interpreters that we can definitely see the legitimacy in a CRP.

I am bothered that professionals aren’t looking more at the fact that so many autistic people struggle with motor control. Speech itself is a motor function!!!

I cannot see why its harmful to introduce a wide variety of communicative options to our children and let them land on what they feel is best for them. Just because you don’t understand something doesn’t mean it’s wrong. They aren’t taking the time to fully understand spelling, CRPs, or the spellers themselves.

They aren’t listening.

They want to be right.

They HAVE to be right.

They cling to their studies that looked at communication through a lens that did not benefit the Nonspeaker. The Nonspeaker was tasked with having to prove their communication in a way that didn’t reflect who they are or how their disability impacted their bodies. “Oh, they spell? Okay, prove it by typing on this board with no one else beside you. Here, we are going to use this examination that hasn’t been adapted to how you learn and respond…”

And then they tell us, “see they didn’t do well, they failed…”

I am going to do what I want with my son. I made that promise to help him realize his potential a long time ago when all those STs gave up on him. There are still so many really good STs out there. I have met many on my journey being so active in online spaces. It’s just we never had the pleasure of working with them for our son. We got the ones that were no good for my son.

I want my son to grow up in a world where he isn’t constantly having to prove himself. I want to go to conferences with Nonspeakers and when they are asked “what do they want for their future” the answer doesn’t include, “learning how to type on the keyboard to prove to others that these are my thoughts.”

My heart broke listening to so many Nonspeakers feel like they still had so much to prove. Look at how far they have come! Look at what they did! They are showing people that they aren’t shells of human beings, that they ARE human beings. Someone is in there. And they know so much. Yet, they feel that they need to type to prove it to others.

I want to tell them there is no proving to others. They won’t believe anyway. They will see what they want. I want Nonspeakers to want to type because that is a natural step in the progression of their spelling journey. I want them to want to type because they feel it’s more freeing for them, that it leads to a more independent life. I want them to type because it is something they choose for themselves and not because they want to prove their worth to someone else.

They are already worthy.

And they owe us nothing.

And we owe them apologies.