Nonverbal…
My son is nonverbal. Do you know what that means? Basically, it means he doesn’t speak or use words to communicate. Actually, he has a couple words. He can say his first name, car, and has a couple one syllable sounds that we now know mean water, shower, pool, outside. But beyond about 10 or so of these sounds, we have no verbal communication.
So how does that work?
Someone asked me recently about how that works. Well, not easily. All behaviors are communication, so we watch him closely to try to figure out what his behaviors and actions mean. Is he coming to me and squeezing tightly? Is he covering his ears? Acting anxiously? Bringing me my swimsuit or a dress? All these mean something.
He also uses an app on his iPad to communicate. At this time, he only uses it for basic needs. I want to go to the bathroom. I need a break. I want to eat pizza. He still can’t tell me or show me if I ask if something hurts, or how he’s feeling. We have to watch his behaviors for that.
Sadly, no conversations as you might imagine a conversation to be…
As for how his day went at school (when school was an option) or if he enjoyed going to Grandma’s or about the funny jokes his cousin was talking about, well, I’ve never had any kind of conversation like that with my boy. He will be 13 next month and has never even been able to tell me what he wants for his birthday or from Santa.
Now, we will show him pictures sometimes on his iPad to try to determine what he wants. I’ve even taken him to toy stores and clothing stores to see if he would ‘pick’ items of interest. We get creative and we try, but most times without luck.
Oh the frustrations…
As you can imagine, this can be very frustrating for him and for me. He knows what he wants, but honestly can’t ‘tell’ me. He feels his head hurting, but hasn’t figured out how to tell mommy he has a headache. There are many times, I watch his behaviors and pray to just understand. Oh dear, I pray every day to understand my child.
It also makes for a very ‘quiet’ life too. (I put quiet in quotes because many times he’s making random sounds or blasting Mickey, Blues Clues and the Wiggles on Youtube). We have quiet car rides. And if I don’t make the effort, hours can go by with no ‘conversation’ or words between us at all.
The silence can be hard…
Now if you’ve met me for more than 2 minutes, you know I’m a talker. But over the years of Mateo and me being basically on our own together – going to the beach, the pool, trampoline park, at home for meal time, etc , just the two of us- has meant I’ve gotten in the habit of just talking and talking whether Mateo is around or not. I’ve gotten so bad, I have entire conversations with myself- at home, in the grocery store, or even when I’m running. Sometimes these conversations are in my head, but many times, they are not.
I started doing this years ago because I hoped Mateo would absorb and listen and maybe repeat. The good news is he did absorb and learn and now he understands so much and can follow instructions. The bad news is he doesn’t really repeat and now if you see me out, you might think I’m not mentally stable – rushing down the aisle talking to myself.
Adapting
As with many things in our autism life, we adapt. I talk to myself and others might think I’m ‘losing it’, but this might have contributed to how much Mateo understands now. (Worth
it!)
Yes, Mateo not being able to share completely what he’s feeling, thinking, experiencing or wanting is frustrating and breaks my heart, but we keep learning how to understand his behaviors. There are times I feel like I KNOW my child better than any other neurotypical parent knows theirs. I mean, I spend so much time analyzing and learning and watching him intently. At times I feel so in-tuned to him, I feel only another special needs parent would understand.
Best of all, when we do have communication break throughs, it’s like he has graduated with a PHD, gotten promoted to a top job, AND won the lottery all together! It’s an amazing high.
So yes, our silent world comes with vast challenges, but it’s our world and I just have to keep trying to make sure it’s a good one for Mateo and me.
Side note
If you want to read more about our communication journey, please check out the A Parent’s Perspective Blog: A Helen Keller Moment