To Speak or Not to Speak, That is the Question

I don’t know where we will be in a year, three years or in ten. I don’t know what our non-speaking angel will do or not do. I only know the present. And the present is that there is no speaking to communicate. (She said “dog” today when she saw one.)

Firstly, I just wanted to show my ignorance. I’m used to autistics like mine. My littlest one wants to eat all day. She pulls you by the hand to the cupboard where peanuts and raisins are put and if you don’t play ball, she finds someone else to pull to the cupboard. She eats enough. She’s our chunky angel. But she doesn’t have an off switch when it comes to nuts and raisins. So when we say no, or if it’s time to eat and we give and then stop, it’s cry time. She will cry and scream till she can’t breathe. It’s HORRIBLE. I know some moms who have to lock their kitchen cupboards and fridges because otherwise they’d be empty. It’s scary. We want our children to be healthy.

I therefore never thought of any other possibility. Till under the post of a mom saying she wished her child could communicate so she knows when the child is hungry or thirsty, an adult autistic who doesn’t speak but uses AAC (augmentative and alternative communication) wrote that she herself doesn’t know when she’s hungry or thirsty so maybe the child would never communicate that ANYWAY, even if they did find a way to communicate.

It really got me. That’s just…wow. So without reminders to eat, what would happen? Without the knowledge that she needs to drink..? What happens to those who aren’t cognitively aware enough that there is such a need that should be fulfilled even if they never feel the need?It’s scary! I just never knew it could happen to autistics though I’ve come across it being mentioned.

Back to us. My angel doesn’t speak to ask for something. If we bring down the wrong item from the shelf she has pulled us to, she pushes the offending item away and again pushes your hand to the shelf or cupboard or you take something yourself. You’ll know it’s the right one because she will take it. Sometimes, it seems she goes there with something specific in mind that isn’t on the shelf. So every item you hand her, she pushes away. We end up picking her up so she can take whatever it is herself, but she never does ‘find’ it. It’s a slow process. And doesn’t encompass all of communication.

Which leads to this post. So then what? If she can’t speak how will she communicate her needs or wants? She is apparently too young for Spelling to Communicate (S2C) and isn’t really a good candidate for picture boards as she doesn’t look at pictures (yet) and doesn’t even want to use apps on electronics (yet). Not interested (yet) in the iPad last time I tried and not interested in pictures whether printed or on the phone or iPad.

First step? American Sign Language. “But you’re South African!” I hear you exclaim. Yes, but we don’t have child-centered SASL (South African Sign Language) videos on YouTube. It’s not only I who needs to learn it, but the children too. Especially my non-speaker, who does watch bright baby and toddler-friendly videos. And after all, it’s not like we are part of the Deaf community here so she won’t use it on someone here. It will be for us. And it’s only a first step. We will still find other means of communicating. Like typing.

Who knows? Maybe Sign won’t work. She has stopped signing the few words she used to. And some autistics never ever find a way to communicate that others understand. But many adult autistics in an AAC group I’m in mentioned using ASL. I’ll try for her sake and mine. I have nothing to lose (except time spent learning.)

Trial and error. One step at a time. AAC is not a big deal here yet. Especially not in Cape Town for someone as young as she is. Apps, devices, therapists that teach them and help find the right ones… It’s not as big as in the States. And the time is not right for us to start the therapists and devices route yet. I read of one South African boy who used to eat his letter pieces, and was rough with devices so only learnt to use communication devices at age 9. What works for one, won’t work for another. Or will work, but later.

So my journey to finding a method of communication that we will understand begins. (Not the very loud shouting and high pitched shrieking that is pure vocal stim and keeps us up till 10pm. 😅Her own ‘speaking’ voice.) Her twin sister still uses sign language even though they haven’t watched the videos in a while. It’s cute. If let’s say, she can’t take the lid off a washable marker, she will sign while saying, “Help. PLEASE” in the American accent the woman in the video uses. Maybe my non-speaker will follow suit one day. Who knows?

Only time will tell. And no, unlike some parents who think that it will reduce the likelihood of the child speaking, I am not worried about that. I’ve seen AAC users who became speakers. Some moms are extremely adamant that their children MUST learn to speak and so don’t want to teach them other ways of communicating. What will happen if the child never leans to speak? What wasted time and opportunity when they could have used another way to know what’s on their child’s mind.

God forbid. For me, communicating is more important than speaking, despite my still hoping she will speak. I want to open her world . Then she will decide what works for her, and we will work on it together.

What is stuck in my head are the words of an adult AAC user who said that she has the words in her head, but to try bring them out her mouth makes her extremely terrified so she is very thankful to be able to type. Others said that it’s painful to speak, or it feels as if there’s a block or wall between their brain and their mouths, and they can’t find the words they want to speak…

Force my child to perhaps do something that she cannot ever do? Or wants to do but will cause her intense mental anguish? God forbid!

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