“Where are your shoes?” I ask.
Toots is sitting at his little child’s table in the bedroom, playing a racing game on the computer. “Mommy, what is that sound?” he asks back. I hear the rumbling of an engine. He knows full well what the sound is. He knows, I know, he knows.
His speech is divided between asking questions to which he knows the answers and scripting, with a sprinkle here and there of regular language. This is his speech, communication, expression. I’d say I hear more questions to which he knows the answer, or fill in the blank type questions, than any other language.
He also uses what is called “appropriate statements in play”. These are ‘scripts’ he has learned in ABA, like “I’m racing really fast!” or “Look at how fast I’m going!” that would be considered “appropriate” for the activity in which he is engaged. Still, he distorts those back to questions like, “Are you going fast?”
The third type of language is regular communication. This is still rare enough (a handful of times a day) that it stands out. “Mommy, I’m thirsty.” “I don’t wanna watch that one!” “Where are we going today?” -all daily examples of language that still gives me joy when I hear them.
“You know what that sound is.” I respond about the engine noise. “Now, where are your shoes?” We are running late and I’m getting tense.
“SORRY Mommy! Sorry!” he responds, feeling the urgency but unable to give me more information.
“There’s nothing to be sorry for, Toots. Where are your shoes?”
“1+2=3!” The equations cussing begin. He still cannot answer this question with a simple “I don’t know.” I have to cover my own stress to calm him down. Once he is calm, I ask again. This is his response:
“Mommy, I don’t know.”
Subconsciously, I knew this is all he would give me. So much should I have understood it coming, that it’s almost comical. Why do I bother? Am I hoping that suddenly he will say, “Oh, I left them out in the family room by the couch. Let me go get them” ? I know that is not happening. I am no closer to finding the shoes but now, I’ve wasted time riling him up and calming him down.
Another daily conversation involves the question, “Do you need to use the toilet?” He ignores me 95 percent of the time. I usually have to ask the question 3 or 4 times, feeling like a nag, but nagging beats cleaning the mess that will follow if I leave him be. When he does respond, he will sometimes absently say, “yes” hoping the conversation will end and he can go back to what he is doing. When I then prompt him to go use the toilet, he panics and backtracks, telling me, “You don’t need to use the toilet?!”
If I take him nonetheless, he gets mad, and again, I get cussed at with equations. Alternatively, at times, he will tell me there is “no poopy in your butt”. Thanks, I’m pretty sure there is no poopy in my butt (well-relatively sure). Sometimes, I get, “you only need to go wee-wee (pee). No poopy!” and then the opposite occurs.
We get “lost in translation” around our house. I try to show patience. I know he must climb mountains to talk every day. Sometimes, it takes time for the words to process. Other times, he understands immediately. Sometimes, I don’t know if it is attention and focus, or something within the perimeter of autism that leave the gap between us. Often, I can see by his facial expressions, that his feelings, intents, desires or needs are right there, standing in line to get out of his brain, but the words are just not coming.
If I ask what happened at school, I get no response. If I ask what he ate for snack, he will tell me. Still, if his dad asks him, he defaults to “I played on the playground,” or he shuts down with “No!” to all questions.
My child is “verbal”, yes. When my son speaks, he sounds like most other children. There is no enunciation difficulty. It’s just that it’s more likely than not that the words don’t match the conversation.
His inability to clearly communicate his needs or responses often leaves him silent in a sea of NT children. He wants to say “strawberry” but the word does not make it from brain to voice without some delay even though the correct word is pushing to get out. And this frustrates him.
He could not tell me if someone hurt him or hurt his feelings, if he was bullied or physically or verbally abused, over-medicated or neglected. He is vulnerable in ways other children are not.
There are things we don’t want to believe, look at, or face, as parents of special needs children. Yet we have no choice but to look the very ugly stuff in the face. At times, we have to fight to maintain our presence in the classroom so we do not become a story in the news like this or that. A story so common place that it hurts every parent when we read about another child who has been hurt.
In the end, classroom cameras may be the only neutral answer.
For now, today, my son is fortunate. Not only do we have a new and trustworthy staff at a school where everyone knows who he is, but we have independent ABA one-on-one aides for my son at school every hour of every day. They are my son’s voice, eyes and ears, his translator, his facilitator.
One day, he will be able to provide his own voice. And I, like every mom I know, am determined to give him every tool to reach that day.
It will happen, no matter how much time it takes, because it has to.