The lights are brilliant and so bright they actually hurt my eyes. Everything is foreign to me...the street signs, the cars, the buildings, the smells hung heavy in the air; a mixture of fish and scooter exhaust and other things I can't pinpoint. My head is pounding and it is hard to focus.
I am walking down a street alone in Shinjuku- one of the busiest places in Tokyo.
Amplified and so intensely loud, sounds reverberate in my ears causing an echo that almost makes me dizzy-making it difficult to think clearly. All I can focus on is how thirsty I was...how long it had been since I had eaten. I don't speak a bit of Japanese and unfortunately- everyone around me didn't speak a lick of English. They all understand each other though. I am an outsider.
So I search. I search for anyone that can help me. Anyone that looks like they might understand me. Anyone that can help me get my needs met. We are not talking about a need to be found smart or funny. Not a need for self-actualization, but primal, basic needs, Friend... Survival mode is kicking in.
Excuse me. Do you speak English? I would ask to foreign faces shaking their head in confusion, their hands high in the air. Then they get too close to my face, staring deep in my eyes in a way that makes me instantly uncomfortable. I could feel their breath on me. I pull back, desperate to regain my personal space as they inch closer and closer. Why are they so close? Why are they doing that? I know I am in danger- I can feel it. My adrenaline is spiking.
People speak slowly and loudly- as if enunciating will suddenly help me understand them. The more I don't understand them- the more frustrated they seem to get with me. LIKE IT'S MY FAULT THEY DON'T MAKE SENSE. They are yelling louder and gesturing wildly. Why are they so angry? Don't they understand I have no idea what's going on? Don't they know this place is foreign to me?
I realize I am actually able to figure out every tenth or so word around me. I can hear a million conversations going on around me but I am unable to listen to just one. I try to respond but suddenly my mouth just won't work. The wrong sounds keep coming out! Wuba, woo doo doo doo- I don't even know what I'm saying. I'm trying to ask for help and I can't even do that. I'm shaking and don't know how much longer I can take the assault of my senses. Please God, I beg, just let me find one person who understands me.
The smells. The lights. Every touch against my skin feels like a burn. I can't survive like this. I wish there was a door to my sanity somewhere. A portal that can take me to a reality not so completely out of my element. My heart is pounding... Please...someone help me- I finally am able to say out loud while I fall to my knees. No one even stops. I just start to cry while people walk by me as if I do not exist. So I start to yell and scream at the top of my lungs, over and over again until my throat swells shut. I slam my fists against my head to stop the fear from swallowing me whole.
This is my son Greyson. He has autism and he can't speak. Sometimes I think he is trying to talk to me- but I have absolutely no clue what he is saying and that kinda breaks my heart. I often imagine what life must feel like for him. I don't want him to be scared and frustrated. Whatever it takes I will do everything I can to make life easier for him.
I've never actually been to Japan... but I imagine being Autistic would feel something like I described above. He lives a lot of his life inside his own head. I do everything I can to help Greyson bridge the gap and feel like part of this world since I can't go there.
I have to work hard to get Greyson to even look me in the eyes...
I think about how important words are to me, not only to get my daily needs met but to express how I feel. How I feel is everything...and being able to express myself to others is a necessary release.
I imagine how bare life would feel without any words.
It's hard to imagine a day without Grey. He reminds me that every little thing is possible and that true joy is experienced most often in regular old every day moments. He reminds me how important it is to adapt--he actually shows me how to do that one.
I still have lots to learn.
(a version of this post originally appeared in December of 2012. I still think about it all the time.)
You paint a very vivid picture... and I'm sure that is probably as close as typical folk can get to having an understanding of what it is like in the world of a person with autism. Greyson & Parker are blessed that you are able to help and find help for them to learn how to navigate in that world & communicate with the 'foreign' people. Would sure be nice if someone could create one of those Star Trek universal communicator dealies to help bridge the gap between people with autism that are nonverbal, and those of us that are. Maybe one day! :-) Guess the picture book and apps is sort of like that though, eh?ReplyDelete
Sweet baby Jesus! It amazes me how much your posts speak to me at the exact time I need to hear them.ReplyDelete
First, I loved "fish & scooter exhaust".
I got very emotional at the end of your Japan story when I realized that is how your Grey can sometimes feel. Then I thought about my boy. Lately, his behavior has been on the naughty side. And I wonder if he is trying to communicate something to me, the best his 6 year old skills will allow. And I have been so frustrated and say things like "Why? Why can't you act good instead of naughty?" Maybe I need to step back and take a better look at what he is trying to tell me. Thank you.
Love & happiness to you, sweet Momma. xoxoxo Miracle
Thank you for this...and for the tears. My daughter just turned 3 and we found out that she may have ASD. She doesn't really talk, only says mom and daddy (which I know some don't even get to hear that, so I am grateful for those 2 words). So often I feel like she can understand what we're saying to her and other times I feel like she doesn't. I here the sounds she makes, they're often directed at me, but she's not able to get the words out, at least not the words I can understand. It is extremely heart breaking to know that she wants to communicate, that's she's getting so frustrated at not being able to communicate in a way we understand.ReplyDelete
I love your blog, but I'm missing you on Instagram. Did you decide to close your account?ReplyDelete
Thank you Lisa! Yes, I did. I needed a little social media detox.ReplyDelete