Wednesday, December 5, 2018

her world is magical


To be Emma is to live most of the time in a MAGICAL world we cannot see. Can you imagine? Living in a place where you can so easily picture yourself on a distant planet? Where music 🎶 makes you so happy you can FEEL it, rocking and smiling and making joyful noises? Where all around you, you have beckoned faeries and pixies, Sasquatch, aliens and droids, pop stars and glitter, long-gone heavy metal 🤘 rockers bringing down the place with kick drum vibrato you can feel in your bones? A place where Chinese love songs make you light up, your heart flutters?
In this beautiful world you see, and it is NOT ugly, people are to be spoken to. Everyone has a story. You just have to tell them you have noticed them. “You have blue hair.” “I like hot sauce.” “How is salsa made?” “How do prescriptions get in glasses?” “You speak Spanish.” Nearly everyone you inquire opens up to you.
That’s what Emma’s world is like. She doesn’t live in a small world. She isn’t simple-minded. She doesn’t feel sorry for herself.
She lives in a magnificent universe (in a plethora of multiverses.) Questions are to be pondered, spoken aloud, then pondered some more. Everything is full of WONDER.
🦄🦄🦄🦄🦄

I don’t live in her magical realm. Sometimes her questions and topics of conversation are tiring. I answer some. We ask Siri others. The day ends. A new one begins. She asks the questions again.
When I get weary, I have to step back and breathe, take time for myself. Then I emerge from my cocoon of literal blankets, and I can see my daughter with new eyes. I gain fresh perspective all the time. I touch her beautiful face and stroke her soft curls and whisper, “I love you.” She laughs if I tickle her cheek. She does not hug back or say she loves me. Sometimes in Han Solo fashion, she’ll mutter an, “I know.” If I sign “I love you “ with my hand she will return the gesture. ❤️

Tuesday, December 4, 2018

Just checking


Insight:
I have a teenager. Not a “typical” one. She is quirky, is on the autism spectrum, and has a movement disorder and epilepsy. She’s also thoughtful, chatty, beautiful, and so intelligent. Everything she does she does much slower than most of is. She requires PATIENCE.
At the risk of over sharing, I just want to give you an idea about something here. ... I want to give her independence. I teach and encourage her daily to do things on her own. ...
Public restrooms. It depends on where we are. What kind of setting. A huge venue or a restaurant that’s not too busy. Do I let her go alone? Today it was just the two of us in a restaurant that had quieted just after the lunch rush. I showed her where the restroom was and showed her how to get back to our table. You have to show her the “signs” to get back, like breadcrumbs. This door here by the lights. Look straight ahead then look up. You’ll see the fans on the ceiling. That’s where our table is.
Well, she was taking forever. And ever. I had a good view of the hall to the restrooms. Could see who was coming and going. The longer she took and the more women (and men) I saw head that way made me nervous. I know she’ll often stand in someone’s way and stare. She’ll rock forward, bent at the waist. Rocking and making throaty noises. And she won’t move. Or she’ll comment on observations she’s made about someone. To them. Loudly.
I checked on her once.
Then again.
She was fine. Just taking longer because her belly hurt some.
She made her way back shortly after I checked on her the second time.
The server was kind. He sensed my worry. He brought Emma some fresh cookies when we were about to go. Emma had enjoyed talking with him about his blue hair. She wanted to tip him personally, which I thought was touching and thoughtful. She wanted to say Thank You. I obliged of course. I explained how much we should tip and sometimes a kind server should get a little extra.

Granted, I will not let her go in a restroom alone in a stadium or even in some Walmarts! And sometimes she NEEDS me to go in the stall WITH her. I have never received a dirty look or an odd look for going in with her. I think most women in public restrooms have been pretty understanding of our situation. If I DID ever get a look or hear a comment, you know ME! Whatever comes out of my mouth will be quick and sharp and cut right through the person! 😂
But days like today, I let go of her hand, and I give her space and freedom and the tools to be independent. ... and I watch that bathroom door like a hawk and keep checking on her! 😂❤️💪