Wednesday, February 22, 2017

Living Life Lyrically



 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.