The Realization of What Spelling to Communicate Brings to our Families

As I reflect on what Spelling to Communicate (S2C) has brought to our lives since we started in 2020, I continue to find myself eternally grateful. My husband and I have twin, almost 11-year-old, boys who are nonspeakers and spellers. We also have a 4-year-old, a 16-month-old, 2 dogs, and a cat, so, as you can imagine, a busy household. We are not without struggles because of it, but we have found a deep understanding of what my boys are dealing with, and this helps us to best support them.

I was, just like many of you, perplexed by the concept of S2C. It didn’t make sense to me right away and I continue to learn new things and light bulbs continue to go off in my head the more I learn… S2C is much more than just a communication method… It is a holistic approach to supporting individuals with nonspeaking, minimally speaking, and unreliably speaking Autism and other complex diagnosis…

I had to unpeel each layer of my preconceived ideas of what my boys were dealing with…

At first, we had to wrap our heads around the fact that they do not have a cognitive disability…

Meaning they do not struggle to comprehend basic concepts or even complex concepts… They absorb and understand everything that they see, hear, or read…

We had to wrap our heads around the fact that they taught themselves to read after being exposed to the letters of the alphabet their entire life.

This was only the first layer that we needed to unpeel and it was A LOT to grasp…

We started to change the way we spoke to them and in front of them (I did anyway… it has taken my husband a little longer to digest and understandably so…it goes against everything we previously thought)

I still find myself stuck in old habits of talking to them like they are my babies (which they always will be) but find that I need to adjust it even more than I thought because of how advanced, mature, and intelligent they truly are. Often I feel that they are way more intelligent than I will ever be…

Once we understood that they understood everything, we then needed to unpeel the layers behind what it means to have issues with motor…

Now this concept was even HARDER to grasp…

I would get questions from my husband and family members like, “Well, if they understand everything then why are they not listening and doing what we tell them to do?”

“Well if they understand, then they can understand why they are being punished for their behavior”

“They know what they’re doing, they’re looking right at me”

“What do you mean they have issues with motor? They seem to move just fine. They can pick up toys and put them away…”

At first, I didn’t know how to explain it… I, myself, was trying to grasp this new concept and understand how it affected my boys and how I could best support them. It was and IS extremelyyyy difficult. There are times when it is just so chaotic in our home, that I want to crawl into a ball and hide because there’s a dysregulated laughing fit over there, a baby crying over here, another child climbing into the kitchen to break glass over there, a 4 yo asking me for food yet again… and I want to scream, cry, and hide.

It is 2023, three years after we started S2C, and I am only NOW settling into this new concept with a deep understanding of what is happening…

So I fully understand the 1st concept that speech is 100% a motor skill. Language is not. People who have motor differences shouldn’t be assumed to also have cognitive impairments so significant that it would preclude their ability to understand and communicate language.

Now I fully understand the 2nd concept that our nonspeaking kids with Autism have apraxia and what that means for them. Apraxia is a neurological disorder characterized by loss of the ability to execute or carry out skilled movements and gestures, despite having the desire and the physical ability to perform them. They also have sensory motor differences, meaning they can be under-responsive or over-responsive to sensory stimuli and it’s not the same for each child.

What does this mean? It means that they have issues with initiation, continuation, and inhibition. There is a brain body disconnect.

For example: I might tell my son to come to me. He could stand there for 5 minutes and during those 5 minutes, he is desperately trying to move his feet forward to come to me but his body refuses to listen to his brain. As an observer, you might think that he is not listening… that he is not complying… that he is defiant… that he doesn’t understand the task I am asking of him… but none of the above are true. In that moment, he is struggling with INITIATION of a motor task.

Now someone might argue… “They seem to have no issues with motor because they do so well with taking off their backpack and hanging it up”…

Well, this is what we call an overlearned motor action. They have done it sooo many times that it becomes automatic. You’ll find that our kids are able to do things they’ve done several times but if you introduce a new task, it may be extremely difficult for them to perform.

THEN we need to unpeel even MORE LAYERS to these concepts to understand even further what is happening… So then we add in the anxiety component…

MOST of our nonspeakers have significant anxiety. I mean, how would you feel if you lived your life completely misunderstood and your body consistently never did what you wanted it to do? Not only that, but every time your body did something you didn’t want it to do, you were reprimanded for “misbehavior” or excluded because it was assumed you don’t want to be included?

For example: I met a speller who had been invited to do an art project with a group of kids and he was sooooo excited that he turned around and ran out of the room. The person who asked him if he wanted to be included assumed that he didn’t want to participate. Later he was able to express on his letterboards that his body most often does the opposite of what he wants it to do…

My one son has so much anxiety that every time I leave the room (example: to run upstairs to grab something, run to the garage pantry to grab tomato sauce, etc…) he will climb into the kitchen to break glass. I couldn’t tell you what started or caused his anxiety but this is something we deal with daily so I never leave the room. I have to make sure that everything is with me at all times and if it’s not, oh well.

It’s not a misbehavior, it is a stress response.

When my other son with severe anxiety is laughing hysterically and kicking his feet in the air, it’s usually because his body feels so dysregulated and he can’t control it. He needs regulation strategies to help him calm down and find control over his body. It is extremely scary for him to go through… While an observer might see it as him being defiant, silly, and misbehaving… Nowadays, my heart breaks every time he gets like that and I desperately try to help him out of it but it can be extremely exhausting for both of us…

There are still so many layers to this that I continue to unpack but each layer that we get through, the more of an understanding I have of what my precious boys go through and a brighter light at the end of the tunnel appears…

EVERYTHING BEGINS TO MAKE SENSE…

Alexandra Ponsica is currently an S2C Practitioner in Training. She is a mother to twin boys who are nonspeakers and spellers. Alexandra is very passionate about helping nonspeakers to learn to communicate through spelling, and will start her practice “See Me Speak” in New Jersey shortly.