Sunday, March 26, 2017

Julia from Sesame Street is my child

There are many sayings and phrases that float around the autism community

"If you've met one person with autism - you've met one person with autism"

"No one person on the Spectrum is the same, just as no 2 snowflakes are the same."

Unique, Special, Different 

 these words have been used to explain my child many times. I'm alright with that. After all, those are some amazing adjectives to describe a person and my child is pretty amazing. 

Most of us can relate to or see ourselves and our "quirks" as characters on film or television. We can relate to these characters and we can empathize, laugh, find humor, joy, and maybe even sadness with these characters that remind us how similar we really are. 

With an autistic person, I can see that as being challenging. The Spectrum is so wide and vastly unique, just as is the person on the Spectrum itself. 

Unique, Special, Different

For example a person on the Spectrum, can be high functioning, low functioning, verbal, nonverbal, the "quirks" and "stims" vary as well

My daughter Zoey is 4 years old, she's nonverbal, and is on the severe end of the Spectrum - low functioning - requiring substantial support. 

I've never met anyone quite like her, she's beautiful, strong willed, funny, smart, she has a smile that lights up not just a room - her smile lights up the world. 

When Zoey was diagnosed just before her 2nd birthday we were told that she was severe and that there was no guarantee that she would ever speak. 

That didn't stop us or her from trying to communicate - we found our own way, a different way. 

I had found that music calmed Zoey during the tidal waves of frustration that come along with severe autism. 

Music became her therapy and her way of communication, she communicates via song lyrics and songs, and instead of talking or me hearing "her first word" 

Zoey sang

Twinkle Twinkle Little Star was my daughter's first word

So when I had friends messaging me saying that a character reminded them of my child, or that when they saw this character they immediately thought of my Zoey - well, I had to see for myself. 

I had to meet this Julia, the 4 year old autistic Sesame Street character, with orange hair and different speech and unique quirks and who seems to really like Elmo, just as Zoey seems to really like Elmo. 

She did remind me of Zoey

 I watched a video of Julia singing Twinkle Twinkle Little Star and I was overcome with emotion...that was not Julia...that was Zoey! 

I left the room to grab a tissue to dry my face from the happy tears of finally seeing a character who was so much like my child. 

I came back into the room where I saw Zoey sitting on the couch watching the video of Julia singing Twinkle Twinkle Little Star with her friend Elmo. I watched as she replayed this video over and over 

My child met someone just like her

Thank you Sesame Street
Thank you PBS

That is Inclusion
That is Awareness
That is Autism 
That is Julia
She is Zoey 

Thursday, March 9, 2017

I won't let go

I don't know how to explain what happened in words because Zoey and I do not use words to communicate and it's frustrating for both of us. She wants to tell me her needs and wants, and I want and need to hear them.

Zoey was not herself at all yesterday

She had in home ABA and even her therapist was shocked by Zoey's behavior

Behavior is communication and Zoey's behavior was erratic and she was having a hard time coping, as was I in watching her struggle.

It's hard for a nonverbal child to find a way to communicate that she's mad and she was mad, that was clearly obvious. This heightened level of anxiety was erupting into something catastrophic, her world was rocked and she was unsteady and I knew why, I just needed to think about it, but it's hard to think straight when you're in crisis or panic mode and we were in both.

When it finally clicked, I felt stupid and validated at the same time - well because I've known this for almost 3 years now. Her old iPhone that holds her musical playlist, the songs on this playlist are her way of communicating. Zoey lives life lyrically. Her life is a song and she is the lead singer. Each song on that playlist holds her words that she can play over and over, but these words are sung by others.

My child communicates via tablet by song lyrics and scripting of YouTube kids cartoons and catchy songs. 

I have sung to this child since the day she was born, and when she couldn't speak to me, I used music to speak to her so that when times were tough we could sit in the dark together and I could show her that she wasn't alone and that I wasn't going anywhere and that I would never let go. Through the music, Zoey and I found our way, she let me in to her world and it is a beautiful musical that's full of colors and love, its's gorgeous. It's getting to see a sunset, sunrise, and a full moon all in one moment of pure extravagant light

She lets me see that
She trusts me
She loves me

And Oh God, how I love and adore this child. She has changed my life, saved my life, and shown me the meaning of true unconditional love. I thank God for the gift that is her, everyday.

Zoey's iPhone was submerged in water and destroyed the other day. For 1 day my child lost her only way of communicating to me. Her voice, her words drowned in the water that took that device from her and her world crashed, chaos erupted, and she showed me by her actions and her disruptive behavior. She's had that device for almost 3 years, and now it was gone.

We were on a clean canvas with no paint and she wasn't ready to start a new painting at all, because she didn't want to paint, paint isn't her thing, music is, and the music was gone.

I had never seen her like this before, but I was wrong, I had seen her like this before. When Zoey was 2 years old and it was not long after her official diagnosis of severe nonverbal autism. She was in her room and I heard banging and her screaming. I ran in to sit by her and she inched away from me so fast, I didn't have time to even feel hurt by her not wanting me, I just wanted to help her. My child was in pain and I didn't know where or why, but she was in pain.

I didn't know what to do
I had my iPhone and I started playing music from my playlist
She stopped banging and screaming
She inched closer to me
She listened to the song
She put her tiny little finger in my hand and we sat there and listened to that song over and over in the dark on the floor of her room and we didn't let go

So yes, I had seen her like this before and so I grabbed my iPhone and I played that same song from over 2 years ago that we had listened to in the darkness of her room, and I held out my hand and she reached out and took my hand into hers.

She was calm
We had found our way out of the darkness and back into the light
She was alright
Her drowned words had resurfaced to the top and she was no longer sinking, she was floating and happy and we sat there smiling and we didn't let go

Today as I drove her to school she played her music, and usually it's many songs all sporadically played throughout the 21 minute ride to school. Today, she played a song that I haven't heard in awhile. It took me a few minutes, but when she kept stopping it and rewinding the lyrics to repeat the same lyrics of the song, I knew that this was her talking to me. I stopped and I listened to what her song had to say, her words to me, lyrically....

"You think you're lost
but your not lost on your own
you're not alone

It hurts my heart
to see you cry
I know it's dark
this part of life

and we're too small (she kept rewinding this particular part)

I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go" - Rascal Flatts

When we arrived at her school, her aide was waiting to meet us and she watched us as we were singing the song together and after the song I said "I love you, I will fight your fight, we will do this together." and then I watched as she let me go and walked into school with her aide.