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
https://www.facebook.com/lifewithzoey/videos/524161461055186/

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

https://youtu.be/rIlLpwgjmXA

Thank you Sesame Street

Thank you PBS

That is Inclusion

That is Awareness

That is Autism 

That is Julia

She is Zoey 

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.

She's just a little Human

 I have two daughter's, a gorgeous brunette, and a stunning blonde, both have the most beautiful ocean blue eyes, that's the first thing people notice right away when they see my girls.

The second thing people notice is that they are just about the same size. There is a 16 month age difference between my girls. They are 5 and 4 years old.

The third thing people quickly learn is that my oldest daughter talks, a lot, while my youngest daughter doesn't talk at all. 

My youngest cannot carry on a conversation with me like my 5 year old can. I don't know when she's sick, or hurt or in pain, because she can't tell me these things like my 5 year old can. 

She can't tell me or anyone at all. 

Zoey is not one of those 4 year old kids that can talk your ear off or ask you a billion questions all in the span of a few seconds. 

Zoey is different.

We found out that Zoey was different when she was about 19 months old and in the month before her 2nd birthday we would know why. Zoey was diagnosed with severe nonverbal autism with "no guarantee of speech."

 We explain Zoey's differences the best we can to her 5 year old sister, who doesn't understand why her slightly younger sister doesn't talk and doesn't like to hug and doesn't like to play games or toys with her. 

She knows Zoey goes to a special school, but she's not exactly sure what Zoey does at this “special school,” she just knows that it's not the same as her school. We don't use labels in our house, we talk about being different and that different isn't bad. 

Having a nonverbal child and having an overly verbal child is, well, it's kinda sad for me.

Severe nonverbal autism is rough, anyone that tells you otherwise, isn't telling you the truth. A child that can't verbally express their wants and needs is a child living in pain, and as a parent who watches their child be in pain because their only way to communicate is to scream and thrash around because their words are trapped inside their beautiful minds, well that's just excruciatingly cruel. 

The emotional and physical toll that these tiny humans and their little bodies go through because their voices can't be heard is heartbreaking to witness day and night.

Zoey has been getting intensive early intervention services since she was 19 months old, and at 3 years old she transitioned into the public school system, as well as getting outside ABA and in home ABA and we still haven't been able to work in music therapy and swimming lessons.

She is a very busy little girl. She works very hard and her schedule is busier than most adults working two full time jobs and she's only 4 years old.

Thankfully I had found a way to communicate with Zoey early on, without words, and it was completely by accident. 

It's with music, I love music, and I found that she does too. I downloaded numerous songs onto an old iPhone and for 2 years she has been communicating with me via music and song lyrics.

Certain songs on her playlist have eased her frustration and anxieties and other songs are used to convey a message, and some lyrics are played to tell me something. She lives life lyrically. Let me give you but just one example of what living life lyrically means...

Recently we had a 2 hour drive to our state Children's Hospital, It was a 2 hour appointment and a 2 hour drive home. 6 hours total with a nonverbal child. All we had was music between us. She played her songs while I listened and tried singing along. I don't think she liked the way I sing because she would change the song everytime I sang. 

On the ride home I had to process the news of a new diagnosis for Zoey, ADHD and I had no one to talk to, so I listened to the songs that Zoey played from the backseat as I drove in silence, while hiding my tears as best as I could. 

I was feeling so very sad for her and this sadness was visibly hurting me and it was obvious to Zoey as she sat in the back playing her music. 

On the ride to ABA the following day, Zoey played the same song over and over for the 25 minute ride. But it was the one lyric over and over, for the entire ride. I got out and I hid my tears as I dropped her off, she was telling me through Michael Buble's song that everything was alright as she kept rewinding the lyric "baby you're not lost" over and over for 25 minutes. Yeah, I broke down, how could you not, she was telling me through song that everything is gonna be okay and that she's not lost and together we will make it through.

Something similar happened this morning on our drive in to school today. She played a song that she's never played before and she kept rewinding the same part of the song, just as she had done that other day. Today, I knew right away that she was trying to tell me something.

The same lyrics for a 21 minute drive to her school

I said "Mama hears you, I get it baby girl, I understand what you're saying, I will listen to the words that you cannot verbally say to me, I will make it better, I will change your schedule to fit your needs."

The song hook she played stung me like a bee sting and I couldn't get the stinger out, it hurt, it hurt so bad. 

"I'm only human...I'm only human...JUST a little human...I can take so much until I've had enough....because I'm only human" - Christina Perri, HUMAN

I cried the entire ride home for my child who through the song lyrics was trying to tell me that she's tired and that she's had enough, and that she needs a break in her schedule because she's working hard and has been for two and a half years and she's just a tiny little human that needs a break.

Freeing my little songbird

Bright lights, loud tones or noises. Sights that are too overwhelming to focus on, the room and therefore the world has erupted into a spin of frightening chaos and your mind and your body react with fight or flight and in most cases both. You want out, you need to get out, your body can't handle this overstimulation at all. 

And like a caged bird that just wants to be set free from the entrapment that you feel, you begin to thrash around in this cage and fight so very hard to escape so that you can take flight and feel safe and at peace again. And sometimes during your thrashing and flailing around, you get hurt and destroy the inside of the cage and you don't care - you just want to get out so that you can breathe...you want to breathe and to stop feeling so suffocated and trapped. 

How do I know this? 

Because my sweet little bird, I've watched you go through this so many times and I've tried to help you and free you from this torment and torture. 

My little bird, my daughter Zoey. I watched you have such an experience just recently and it wasn't your first and I know it won't be your last. We did our best to get through it, just like we always do and always will. 

This time it was a new appointment and an evaluation with a new therapist. The door closed and the therapist locked the door and it was as if you were locked in a new unfamiliar cage, with new lights, sounds, smells, and colors all around. 

Fight and Flight commenced immediately! 

I watched as you thrashed and grabbed anything in your way and tore apart this tiny room, my little flightless bird was destroying this little cage and nothing was safe, and neither were you or anyone else who happened to be in the cage with you.

I needed to help you

I grabbed you with my arms around yours and I began to shout lovingly: "Zoey you're ok, you're ok, it's ok, you're safe!"

As I held you in my arms we fell back into 3 oversized "crash pads" and I could hear and feel both of our heartbeats so loudly. We got to our feet and before I could stop you, you quickly picked up a chair and threw it at your captor. 

I sprang into action once more as this bird raged on and this time you were flailing on your back on the floor and I rushed and hovered over you, hugging you tight as you were unable to focus and watched as you continued to scream all while still trying to fly away. 

I hugged you with my arms tightly wrapped around yours and I began to sing

"Wise men say only fools rush in but I can't help"

You focused and you made direct eye contact with me. You, my little songbird looked up at me and sang right back...."falling in love with you."

And then at that moment my little bird was set free. You came back to me. 

This is what my daughter's autism is like. 

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. 

“How’s she doing now? One woman’s story of living with mental illness

She’s different 

She’s changed 

She’s the person you once knew. 

You feel sad and kind of pity her and you may even say things like ...”she had it all, what a waste!”  

You stopped inviting her to your events, parties, and gatherings. You haven’t picked up the phone or bothered to text her to see how she may be doing and how life may be treating her. 

She’s out of sight and out of mind, until a moment in passing with a mutual friend or family member and they ask you ... “hey how’s she doing now, have you seen or talked to her lately?”

You don’t know. That moment may or may not have sparked your curiosity about her well being and how she’s handling life or thought ...

“how’s she doing now?”

So you call, text, and you even reach out to her via social media. If you call her to see how she's doing then you've done your duty and you can continue on with your “very busy life.”

But, did you really help her to get the help that she so desperately needed to address the mental health issues that she didn’t even realize that she had? 

When you finally do reach her, she eagerly accepts your invitation to talk because she is ready and has been waiting for this conversation. She’s played this talk out over and over in her mind for years and she is more than ready to confide and talk with you. 

She explains to you that she is tired and she explains to you that she realizes that her life is not what she had expected or how she thought it would be. She goes on explaining to you that she is “awake” and fully aware and that she truly understands now. She tells you that through years of intense therapy, she has realized that she had dissociated for ten years from the traumatic events that she experienced from early childhood and that even more trauma continued on into her adult life causing her to decline even deeper into dissociation. 

She tells you that she understands that the traumatic events in her life had caused her to become extremely sick. She tells you that she is mentally ill and has been for her entire life, unbeknownst to her, until now. 

She explains to you that this is a scary new realization for her and that she is sad to come to terms with what her sickness has taken from her. She bears her soul to you even though it terrifies every fiber of her being.

She shares with you the daily pain that she carries around with her over the relationships that were damaged, lost and the ones that are beyond repair. 

It took her ten years to realize that she was “sick” and that has been something that she has been diligently working on with the help and guidance of trained professionals. She tells you that she has finally found “her army.”

It took her ten years to finally become “awake” and finally “come to” and she has found her “true self” after years of being lost. She missed out on so much and she wanted you to know that. 

she wondered and asked you ...

 “why did no one try and help me?”

You see, she had learned that those that were closest to her, they knew just how very sick she was and that she was living with a severe mental illness, even though she had not realized that herself. 

She was left to deal with her own suffering and lived in isolation. She was cast aside and put out of their sight because “she was out of her mind.” 

No, not “out of her mind” she was just living and suffering from a mental illness that stole ten years of her life. 

So she asked you why? 

“Why didn’t you tell me that I was sick if you knew?”

You didn't have an answer for her

She broke down and cried and wanted to ask you more but she stopped. She did not want to hear your answer for fear of being cast away again and feeling rejected by you. She wasn’t ready to be cast away again or anymore. 

You see, she had already been stung and was hurting and trying to heal from the pain of a conversation that transpired with a family member, a family member whom she confided in and bore her soul to, only to be told ... 

“I’m glad that you’re finally trying to make things right!”  

- A harsh and rather insensitive comment to make, seeing how she had done nothing wrong to “make right” and was unaware of her mental state. 

She has an invisible illness, mental illness in fact and she finally knows that. 

The stigma surrounding mental illness is undoubtedly real. It makes it damn near impossible for those that suffer from their illnesses to want to talk about it, share their struggles with it, and even harder to ask for help with it, especially if they are unaware they are suffering from it. 

If you’re wondering “How’s she doing now?”

Thank you for asking, I’m doing ok and managing as best I can.