How Cinderella made my autistic daughter feel like a princess

Birthdays are supposed to be fun and exciting for little kids, I know my six year old, Anna is already planning her next Birthday party and theme the night after her 6th party ended...that excited.

Birthdays were always so exciting and fun for me too, so much so that I would have my girls parties planned and ready to decorate months before the party.

That changed for me a month before my youngest daughter, Zoey turned 2 years old. The month before she turned 2 years old, Zoey was diagnosed with severe nonverbal autism, global developmental delay, dyspraxia of speech, and would soon be diagnosed with extreme ADHD

I tried to pull myself together enough to plan her birthday party, and do it just like I had done her 1st birthday party, how I had done 6 of her older sister's birthday parties. Her 2nd Birthday didn't go as I had planned and I would realize that none of her birthdays would go as planned again. I tried, each year I tried. 

Her 3rd birthday was too loud and she was on sensory overload, she didn't know how to blow out her candles, and we didn't sing Happy Birthday because she started to cover her ears from the noise, I took some flack for not singing the Happy Birthday song from some family, but I did what was best for my child and will continue to always do so.

Her 4th Birthday was a beautiful sunny day and I invited just small a group of family and friends and I did an ice cream social. Ice cream is her favorite and I thought why not build your own sundaes.

She saw everyone gathered around and immediately came over to me to escape the small crowd, I knew it was too much, she wasn't comfortable. She motioned for her and I to go inside, and I granted her that, after all it was her day. While our friends and family still gathered outside eating cake and ice cream sundaes, Zoey and I played with some of the very cool sensory toys that she had gotten as gifts from her friends and family.

Being social is very difficult for Zoey, if we have company she usually retreats to her sensory room for a "break" and I respect her wishes every time.

I had no idea what I was going to do this year for her 5th birthday. I know that 5 is a milestone birthday and with school and therapies she had come along way from years past. 

I noticed she was listening to the original Cinderella cartoon songs on her tablet and she would sing along with Cinderella to the song "Sweet Nightingale" and to see her sing it was beautiful, and soon she started watching the cartoon and she never went to shut the TV off, which she usually does, she actually was enjoying it and captivated by it. It made my heart happy to see her enjoy something, Zoey liked Cinderella.

I did some research and I found a company that does Princess Parties. Precious Parties By Kayla. I got in contact with Kayla and I asked if she would come visit Zoey on her Birthday, she was so thrilled to be a part of Zoey's special day and so we booked her. Cinderella was coming to Zoey's 5th Birthday.

Again, I invited just immediate family and close friends and as our guests arrived Zoey took their presents from them and opened them right away, I agree, who really wants to sit around and watch you open presents and be the center of attention. Everyone else thought it was great too.

Cinderella soon arrived not long after our guests and all the other children squealed with excitement while Cinderella sat down on our floor and gathered the children around her to show her what she had brought them. A treasure chest full of trinkets and fairy wings, and then she grabbed out a Cinderella book, looked right at Zoey and pointed to Cinderella on the cover and then at herself and Zoey said "Cerella." 

Zoey knew that Cinderella was here at our house. It was overwhelming for her and she took many breaks. Cinderella did face painting on all the other kids while Zoey sat on the couch having me give her deep compression (squeezes) on her legs. My husband came over to us and he said "Cinderella is here for you baby girl." Zoey kept taking my hands to do deep compression on her legs, as I looked up at my husband and said "we tried, we tried."

Zoey was definitely intrigued by this beautiful Cinderella at our house and she actually went up and approached her 3 times. I was moved and close to tears, because no matter what Cinderella was doing, face painting a child, answering a question, whatever it was she was doing she stopped all 3 times Zoey approached her, and she treated her like the special little princess that she is, and that meant everything to me.

We brought out the cake and we sang Happy Birthday to Zoey this year, and this is the first year that Zoey blew out her candles. Cinderella cut her cake and then took pictures, signed autographs and then said her goodbyes, and off she left on her way back to Prince Charming.

Thank you Cinderella for making THIS birthday special for my special girl, and it went exactly how I had planned.

My Daughter is Different and so am I

My child is amazing, truly freaking amazing. She is everything that I want to be. 

When I'm tired and I think that there is just not one more day that I can possibly push through, I look at her progress and I push myself to push on through, on days when I feel like I can't even get out of my own bed. Zoey pulls mentally pulls me out, that's what my depression does to me. I am a mom that struggles with illnesses of my; major depressive disorder, anxiety, and panic disorder, complex ptsd, and Fibromyalgia 

3 years ago on a day in August, my husband and I drove 2 hours away to have a specialist confirm what we had already suspected...autism had chosen our child.

Getting any kind of diagnosis is a shock, nothing prepares you for it, and if you think you are prepared, well that preparation crumbles in the wake of a specialist looking at you and telling you that there's something wrong. 

When it comes to your child, the last thing you want to hear is that there is something wrong, you don't want to be handed pamphlets and told to find a support group. 

Even after they looked up and asked us, "do you understand what we just went over with you?" 

We shook our heads yes, obviously we were in shock because we didn't understand what we were in for 

We were exited out and then shown where to get onto an elevator. I looked up at my husband who was holding onto our almost 2 year old and I asked him 

"what do we do, what happens now?"

"It Changes Nothing, she's still our happy child."

I tried to accept that and believe him as he said it to me, but it did change everything for me! 

I stayed up every night, researching, blaming myself, even blaming my own illnesses, what had I done wrong. So I cried, sobbed, grieved, I got angry, and I spiraled into another bout of major depression, one of many in my life. 

These emotions of sadness, fear, and anger, well they lasted for more than over a year for me, and on the days that I had thought I had settled up with those emotions, they came back looking for more from me. A vicious emotional cycle of tug of war that I was really tired of fighting, and I realized that I needed help and so I started seeing a therapist  and soon I stopped fighting those emotions and I released them, I stopped blaming autism for choosing my child and I stopped the love hate relationship that I unknowingly had with autism. 

I realized I was discriminating autism, not my child, but autism. I was treating autism poorly and making autism into something scary and wrong...why, because autism is different, we are all different. 

Yes, different can be scary and we can be afraid of the unknown, but everything and everyone deserves a chance to show you just how beautiful different can be. I tell my children that just because someone or something is different, "different isn't bad."

 Zoey's autism saved my life! I know it sounds silly and like I'm trying to kiss autisms ass for "likes" but it's true...autism saved MY life. 

If not for Zoey's autism I never would have woken up and embraced my own illnesses and I wouldn't be the mom I am today, not just for my kids, but as a person. I became Zoey's voice when she had none, her advocate when needed...always her mommy that loves her. 

In being Zoey's voice, I found my own voice, in helping to fight for Zoey's needs, I learned to fight for my own needs. Getting Zoey's autism diagnosis helped me understand my own diagnoses and something inside me woke up and I realized autism doesn't discriminate and that no one should discriminate and that in talking and sharing, maybe we can end the stigma surrounding "differences."

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.