How twenty one pilots helped me understand my daughter's stim

My daughter Zoey is 4 years old, autistic and is considered nonverbal.

She can't tell me her wants or needs or if she's hurt or sick, and as her mom I want and need to know these things. Through intense early intervention therapies Zoey has come such a long way and it has been one hell of a ride.

I found that I could communicate with her through music, and soon my nonverbal daughter started singing, not talking, singing. 

There is a song for just about every scenario in our house. If she says "No" then you will hear her sing "No more monkeys jumping on the bed"... yup that is her rendition of the word No.

Twinkle Little Star was her first song and it is her go to song if she's angry or needing to escape from the overstimulation of a situation or just from the world. 

I watch this gorgeous child stand while putting her hand up in the air as she stares into her palm, like shes seeing a magic in her hands that NO ONE else can see. And yeah, I wish I could see it!

I watch her when this happens and I'm jealous, like really jealous. This one particular stimhttps://en.m.wikipedia.org/wiki/Stimming is amazing. 

She has many stims like rocking and banging her head when she's trying to soothe herself, lining things up all around the house, and she's a sensory seeker, so she has to touch and feel everything. Sand and water are her absolute faves!

But this one stim, it is beautiful and when she does it, I know she can't answer me but I can't help but ask every single time..."Zoey what do you see my love, is it beautiful, you make it seem so amazingly beautiful?"

Oh how I wish I could see what she sees

I'm jealous

She does this stim all throughout her day with a huge smile on her face, so I know that it is angelic whatever it is that she sees, it's heavenly to her. Seriously, who wouldn't want to see that. I have tried figuring it out for 2 years now and I never could, until just recently with the help of her new favorite song, music, ah yes, but of course.

Zoey and I jam out to music all day and night. Zoey is fast paced and she's not the kinda kid to sit in front of the TV, in fact when it's on, she actually shuts it off herself.  I love all kinds of music and so does Zoey.

Music by Carrie Underwood (See you Again) and Rascal Flatts, (My Wish) Beethoven's Moonlight Sonata, Michael Buble's song Lost, she loves Imagine Dragons, and she digs Elvis too. 

So I am never surprised when a particular song reaches her. She's had so many different types of therapies, but NOTHING has done for her what music has done for her. 

Zoey communicates through music and it's awesome. I love it because I love music too, it's our connection.

Recently I have been listening to a new band and she digs them a lot. She comes running from her room if I start playing The 21 pilots song Ride, not a little jog, I mean full on marathon speed because she does not want to miss this song. 

That's how the Beastie Boys were for me at her age, so I know how much she likes this band. 

I had their video on our TV via youtube and she sat and watched it, seriously, this kid doesn't do TV so I was shocked that she didn't try or even move to shut it off. She heard her song and she was watching them sing it on our TV

A very cool moment

I had never seen this video so I was into it too

Then I saw her stim

The video was dark and then went to a bright light, darkness to light

Zoey stood up and put her hand up in the air, she smiled huge as she gazed at her palm and then she closed her eyes, still smiling, she began to twirl and spin right where she stood...she was dancing, in her own way to her own beat as the music played.

I finally understand

I get it

I've been thinking too much about it

It's really just as simple as this, it's her pure joy and love for something.

Whenever things seem to go dark, she can find a way to see through to the light.

And to me, she is pure light! 

Her world is music, she is the lead singer, she wants to dance to her own beat to her favorite song...yeah, it's a beautiful thing to see her in her world and I'm taking my time here and so glad she let me in on her ride.

https://youtu.be/Pw-0pbY9JeU

The Land of Autism

I love hearing how "our life" has been an inspiration to some of you or how you can relate to a feeling or emotion I have as a mom, and I love hearing about all the different ways you all advocate. 

I follow a lot of blogs and I have noticed that they all differ on how they decide to show the world what their lives are like with autism. We all want to spread awareness for autism, I know that for a fact. We want inclusion for our children, we want needed services for our children, we want the same rights for your children and for our children. 

I'm a "newbie" in the land of autism and my child is very young. 

Those parents right now with older kids or adult children on the spectrum have definitely paved the way for "newbie" parents like myself. I wouldn't know half of what I know if it weren't for me seeing the stories of the autism "Vets" and what I didn't learn from them, I learned from autistics themselves. 

I remember that feeling of getting my child's diagnosis and all the emotions that came along with that. I also know what it's like to want answers from professionals and not get them, and to be sent on my way to this new land, the land of autism.

 I just want to learn as much as I can here so that I can set my child up to one day live alone in this land. 

When I got here I wanted to be accepted and taken in right away, but just like a new kid at school, not everyone accepts you. I get that! It's ok, we don't have to like everyone, but...

I sure as hell am going to teach my child that if she wants acceptance in this land that she has to accept all others here too. 

In this land there are differences of quirks, stims, functionings, and most of all there are the differences in opinions. 

isn't that what makes life in this land great? 

Our life with autism might not be like your life with autism, but it is not uncommon to find someone in our community that we can relate to. Whether your child is young, old, girl, boy, whether you're a parent, a self advocate or advocating for a loved one, we all live here! 

In this land your house may be bigger and you may have more friends at your parties, and if that's the case, good for you, you've done well for yourself. 

I'm just sitting here unpacking our stuff, settling in and getting us adjusted to our new life in our new land.

 It makes me kinda sad to see the long line of those who will also be joining us and moving in here too. I know how scary it can be to move to a new place, so I'll make sure to say "Hi" and "welcome" as they come on in.