The reactions we get when Zoey blasts her music wherever we go

I've gotten used to strangers and Doctors talking to Zoey without her responding back, I know why she doesn't, but they don't!

Zoey has nonverbal autism. She can hear you and I'm pretty positive that she understands you, she is after all still only 3 years old so with her you have 3 year old behavior along with autism...it's really interesting! 

I knew fairly early on that Zoey connected to music, it soothes her, she sings, yes she is nonverbal but she sings. I know, I hear all the time "How is she nonverbal but she can sing?"

I had that same question...

And the answer is simple, she's using a different part of her brain, the part of her brain that responds to music and singing and that is how my child communicates. It's fascinating to watch her! I have many videos of her singing, I sing EVERYTHING to her...cleaning up, getting dressed, eating, diaper changes, anything. You name it I have sung it and she responds to it. 

Music has helped us tremendously in our life. Carrie Underwood taught her to hum along and bring her to her Zen place. Michael Buble sings to her and she knows that she's okay, she's not Lost. Twinkle Twinkle Little Star is her Anthem and she will script it all day long. She is my little star, music runs through her and makes her come alive, I've never seen anything quite like it. 

I know with me that if I hear a song it takes me back to a moment in time and I sing along and I feel great. I enjoy it, music is thereaputic and healing. 

Having a child with nonverbal autism can be challenging, but Zoey makes it okay, I get her. She is the music, she is communicating by songs. She can take my iPhone and navigate through all of my music and she searches out what she wants to listen to...I'm in awe of her when she does this!

We left a neurologist appointment a few months back and she had my phone and was listening to Michael Buble as we left, the Neurologist says "she has good taste!" I laughed and said "she sure does!"

We've been in the grocery store listening to Mary J Blige's "Therapy" with many onlookers watching my child sit in a cart swaying to "When I can go therapy 2 times a day"

My favorite was yesterday. We met with a new Doctor for the first time and Zoey immediately puts on "Demons" by Imagine Dragons. As we sit there listening to the chorus "it's where my demons hide...it's where my demons hide" I listened to this new Doctor say "I love that song!" I laughed and said "yeah Zoey is really into music, it's her thing."

This Doctor started swaying back and forth as we are discussing Zoey's new plan of action and the Doctor stopped talking to me and was singing along with Zoey and said "she makes me wanna dance!"

Okay...out of ALL the reactions to Zoey blasting her music, that by far is my favorite. We finished our appointment, walked out to the front desk to set up a follow up in 3 weeks, and the Doctor followed up front, stood behind her staff and said "Do you hear her, did she play her music for you?"

Zoey was sitting in her stroller listening to "you are my sunshine" and I was a proud Mama because my child with nonverbal autism had communicated by way of music and made someone's day! 

Why I turn to Michael Buble when my daughter has a meltdown

What is a "Meltdown?" I don't know what other ASD parents call a meltdown, but I know what a meltdown looks like and feels like in my house!

Tonight, was going GREAT!! Both my girls were in their beds and asleep before 9pm! That is Awesome in our House. 

I was sitting down getting ready to clean my kitchen and do the things I do when my kids are sleeping. 

Then I heard it...screaming and banging! I rushed into Zoey's room to help her from whatever it was that was bothering her.

Checked her diaper first and that was fine. As I'm trying to figure out what could be setting her off, I notice that she's trying very fast to get her long sleeved onesie off and she is agitated! I go over with a short sleeve shirt and a pair of bloomers and I keep telling her "Zoey, it's okay, I can help...it's okay, I can make it better...you're okay."

As I'm doing this, she's thrashing and kicking and screaming!! I take a kick to the face and another to my throat and I just continue to change her and tell her she's okay!

My husband comes running out to help and I yell "Get my phone!"

He quickly returns with my phone and I immediately go to my music and I start to play one of her "calm down songs"

"Lost" by Michael Buble

As I sit next to her I sing along to the words, and she leans in next to me and I'm able to quickly kiss her forehead. I took her hand and placed it in mine and I just held it and she grasped her hand around my thumb and laid down next to me with her blanket over her head! She's never done that before, I sat there with the song on repeat for like 10 times. She started to make a sound like she was humming or at least trying to hum the song in her way. Then she looks up and smiles! That's what a meltdown is like in my house!

It is not a tantrum, it is Zoey's body and mind telling her and making her feel like she just can't handle or cope with whatever it is that is bothering her. It could be her clothes, it could be a sound, it could be that she just doesn't feel good and she wants to tell me but she can't because the words are trapped. 

I try and imagine myself as Zoey, and I have a very good idea of what it feels like for her, and it breaks my heart. Imagine having conversations and screaming for help but no one can understand you or hear you, you get so frustrated because you want milk, but you don't know how to point and say "milk" you don't know how to point or verbally express your needs or wants at all...and you so badly want to and when you try, only screams come out! Your voice is trapped...screaming and yelling are now your words as your speech is lost in translation. Frustration takes over and the only way to release that frustration is to rock back and forth, bang your head, flap your hands, or spin and sometimes you even just hit your limit and you throw yourself to the floor and cry and thrash around until that frustration eases. 

For Zoey, music helps her to calm down during a meltdown. She can hear the words and whoever is singing is singing to her, she has her favorites like Michael Buble...he sings to her and he's singing "baby you're not lost!"

If he only knew the impact he has and how when he sings to my baby she becomes calm, relaxed, and definitely not Lost! 

"Cause when you feel like you're done

And the darkness has won

Babe, you're not lost

When your world's crashing down

And you can't bear the thought

I said, babe, you're not lost

Life can show no mercy

It can tear your soul apart

It can make you feel like you've gone crazy

But you're not

Things have seemed to change

There's one thing that's still the same

In my heart you have remained

And we can fly fly fly away

'Cause you are not alone

And I am there with you

And we'll get lost together

'Til the light comes pouring through

'Cause when you feel like you're done

And the darkness has won

Babe, you're not lost

When the world's crashing down

And you can not bear the cross

I said, baby, you're not lost"

The beautiful ways my hopes and dreams changed for my child

When Zoey was diagnosed with Autism in August 2014 we were told that "there is no guarantee that she will ever speak."

I hang onto Hope, I cling to Hope, I wear Hope, I sleep and dream Hope, I breathe it in everyday and never release the Hope. It is a part of me! 

My child is a part of me too, she is a piece of my heart, she makes me want to be healthy, to fight for anything and everything she needs, she's made me into someone I never thought, or even dreamt I could be. 

I knew nothing about Autism! I didn't know the different severities, I didn't know that my child may never talk, I didn't know that she would not be able to communicate at all, I didn't know! 

What I did know...To never lose Hope, don't take the small things for granted, and that I love this child unconditionally with all of my heart...that I know! 

Of course I wanted to hear her say "Mama" and wanted her to hug me, and yes I was sad. I put the sadness away and focused on what she could do, she has made huge progress this last year with Early Intervention, and she has opened up to me and we have a bond that we didn't have before. I get hugs, she sits with me, she lets me rub her face, she shows me love without words. 

I was hoping for her to talk so that she would be less frustrated, instead we found a different way to communicate with each other. The funny thing about Hope...do you really know or want what you say you are hoping for, I had Hope that she would speak so she could say "Mama" or "I love you" or at least tell me what she wanted or needed. My Hopes turned into something different...I Hoped for her to be happy, feel less frustrated, and to feel and know love. Those Hopes have come true! 

Then Hope just floats around like a bubble, it's there and airy and beautiful! Then without you asking, praying, or dreaming for it...it just happens! I just make sure to capture that bubble before it pops and wait for the next one...because bubbles are Amazing! 

The great divide within the autism community

My daughter was diagnosed in August, right before she turned two years old. I did everything on the pamphlet that the Neurologist gave me when he said "You're daughter has Autism Spectrum Disorder."

I told family, she was already receiving EI but we were now going to be getting much more...intensive in home therapies everyday. I was praised and commended for being her advocate and getting her diagnosed early and for fighting...man did I fight! 

The pamphlet mentioned finding a support group, I looked and found none. I turned to the internet to find Moms and Dads like me, I knew I wasn't the only one who needed to talk it out and talk with people who get it, people who are living it, just like my family. 

What I didn't know was that there is a great divide in the Autism Community I didn't realize that not only would I be fighting and advocating for my daughter, but I would also be fighting and having to explain myself on how I advocate for her. 

I see it everyday...the great divide! 

I try and stay clear of it because I have a job to do. I am a Mom, Caretaker, Wife, Advocate, and I'm a person living with Autism! No, I do not have Autism...but my daughter does! I change her, not knowing how long she will be in diapers, I keep her safe by bolting furniture, and keeping all doors and windows locked, my kitchen chairs have been on top of my kitchen table for almost a year, I take her to every appointment and there are many, and I sit down on the floor EVERYDAY during her therapies so that I can take it all in and learn it so that I can teach her for when her therapists are not here. Her needs come before mine and I gladly make it that way...I have a job to do! 

I am an Autism Mom, I'm living with Autism! Autism came in to our House when Zoey was 14 months old, and it didn't just change Zoey's life, it changed all of us! I have become her voice, caretaker, teacher, and advocate...I'm living it with her, her sister is living it with her, and her Daddy is living it with her. It affects us all. We are her support system! 

So it baffles me when I see heated discussions through the Autism Community! 

"You can't call yourself an Autism Mom"

"You don't get it because your child is high functioning"

"You don't get it because your child isn't severe"

"Don't call me an Aspie"

"I refer to myself as an Aspie"

"No labels"

"Accept it, he or she is Autistic"

I've watched the fighting and I have seen people get mean and nasty...it's sad!

A child with Autism has a different journey and path than that of an adult with Autism. Each person with Autism is on their own unique and beautiful path...who is anybody to judge how a person advocates for their young child, or how someone chooses to advocate for oneself? 

Don't we all want the same thing in the end? 

AWARENESS. ACCEPTANCE. LOVE.

If we are judged by the way we choose to advocate for a child, teen, or an adult with Autism, then I'm truly saddened! 

That's not true Autism Acceptance! 

We need to Accept that "if you've met one person with Autism, you've met one person with Autism!"

We need to Accept that each path and journey will be different, and that the great divide isn't helping...everyone has their own story and how they choose to tell it...we need to accept that! If we as a community can not Accept one another, how can we ask others to? 

The day Zoey sang Led Zeppelin in the grocery store

Music has been the best therapy for Zoey, it has helped her find her voice, she is still considered nonverbal but this child can sing! 

Not all songs are pretty ballads or catchy lullabies, sometimes the song that she sings is a high pitched angry scream that sounds very much like a Led Zeppelin song. 

Yesterday was that Zeppelin song. We were at the grocery store and she had tried to bolt out of the cart I was pushing, you know the ones with the car in front, yeah well I had both kids in there and it was going great!

 I had stopped the cart and she got out...oh did I forget to mention that her nickname is Houdini. She can get out of any buckle or harness...we really don't know how, other than she's Houdini. 

So there I am chasing her through the produce section of the grocery store and I was able to scoop her up and put her in the carriage part while her sister stayed in the car part. I had just enough of what I needed and was bolting for a checkout...the whole time she's singing Zeppelin at the top of her lungs...you know the chorus screaming part of the song. No, she's not really singing this song, her constant scream is just like that of the song! 

http://youtu.be/kEGuHdKn0Lc

I'm in the checkout lane, groceries are on the belt ready to go...I'm waiting...the screaming chorus continues while everyone turns to stare at us. Not a fun moment. 

I kept looking at Zoey and I'm trying to get her to make eye contact so that she can see that I'm using the sign for sit down and all done, but her singing got louder and louder and it was all you heard throughout the grocery store. 

The woman in front of me turned and looked my way to say "It's that time of the day, huh Mom." I smiled, shook my head and thought to myself yes, if you're in the mood to hear Led Zeppelin's "Immigrant song" sure it's that time of the day! 

I continued trying to sign and get her to look at me, she wasn't having it. The young cashiers were chuckling and smiling, while I was not! 

Then I felt someone behind me, he put his hand on my shoulder and he said "you are a great mom...you are doing great!" Obviously a Zeppelin fan!! 

I thanked him and I said "she's Autistic and this is just a bit too much for her!"

He again looked at me and said "it's okay you're both doing great!" 

I left that grocery store with stares and eyes all on us, but I left that store feeling okay...with tears in my eyes because this one man reached out to say I was doing a good job, I was a good mom...when I felt nothing like that at all! That is Acceptance right there!! 

We got to the car and I immediately put on her calm down song "I will see you again" by Carrie Underwood. She had stopped belting out the screaming chorus of Zeppelin's "Immigrant Song" and instead was singing "Oh Oh Oh...Oh Oh Oh"

So yes, yesterday was plain awful, but that's then, not now!

© 2015

Melissa Cote 

How Carrie Underwood let me know that my autistic child would be ok

When we were given Zoey's diagnosis of Autism, Global Developmental Delay, Dyspraxia of Speech, (Zoey is nonverbal) Sensory Processing Disorder, and Obsessive Compulsive Disorder in August 2014, she was not quite 2 years old. 

Life in our House has turned into Therapy everyday for Zoey, and it has changed how our  little family of four operates. This was definitely not the life that we planned. 

We went full throttle into therapies, starting when Zoey was 19 months old, and we haven't   looked back...as far as therapy goes anyway!

Of course I've looked back, I'd be lying if I said I didn't! I looked back a lot! 

Zoey was hitting every milestone, most of them early, she was walking at 11 months. She was singing and babbling and screaming just to hear her own voice, I watched my beautiful baby grow and learn...at 14 months old I then watched as she "went away!"

She stopped babbling, she stopped eating on her own, she stopped playing with her sister, she hid away in other rooms, and I could no longer pick her up and hug and kiss her, and I missed her, because she was gone! She rocked and banged and screamed and we had to guess what it was she wanted or needed all while she screamed at us, yes her words that were supposed to have been there were gone! 

Frustration, Aggression, and Meltdowns became common and I felt helpless. 

Where did she go? What happened to my baby? She was just here and now she's gone. You see I have pictures and videos of my child  and I look back and all I keep saying in my head is that Autism stole my baby! She was here and then she was gone...I hated Autism for stealing my child, a secret I kept to myself until now! 

My intention is not to offend or upset anyone with that statement, it is something that I've carried with me for 10 months. 

To watch your child throw herself, bite herself, scream out of frustration, and watch her scurry away from you when trying to help or console her...well, that's just not fair, Autism! 

I was sad and depressed and hated Autism for stealing my child and leaving her speechless and frustrated and for making me scared. I was and still am scared for my child. Having a diagnosis of Autism at 2 years old is good and bad. Good because we got Early Intervention earlier than most, Bad because it leaves us with the uncertainty of her future. Will she ever speak, Will she experience the same things her older sister will experience...boyfriends,  (not that my husband and I are rushing that...at all) sleep overs, getting her drivers license, graduating high school, college, marriage, children...will she be able to live independently? 

No one can answer those questions for me right now, and I'm scared for Zoey's future, and the all mighty question of them all..."what if something happens to me...will she be ok?"

These were my thoughts for 10 months! Let me tell you what made me realize that everything was going to be okay.

Music is therapy for Zoey, most people may not understand her when she sings, but I do! She can sing Twinkle Twinkle Little Star all day, I can make it out even if others cannot. Her calm down "meltdown song" is " I WILL SEE YOU AGAIN" by Carrie Underwood. I gotta be honest out of all the songs for her to love, it is the most heartbreaking one for me! 

Here she is loving a song sung by a woman who is singing "I will see you again, this is not where it ends, I will carry you with me, until I see you again"

Tough lyrics for a Mom that blames Autism for stealing her child, and not knowing if I will in fact "see her again."

For months this song has been played on repeat in the car, house, and on my phone or tablet...I cried every time! 

Until I didn't! 

We were driving in the car and of course the song was on repeat like always, and then I heard it, I heard her! She was humming along to the song. Weeks went by and that humming turned into sounding out the melody, and then finally to her singing the song in her way! Others may not hear it, but I do, it's in her own way and it's beautiful...and I sing along with her, and she smiles and I smile. It's going to be okay...she's showing me and singing to me that "I will see her again, this is not where it ends!"

© 2015

Melissa Cote

Do not let anyone treat your child anything less than amazing

So, yesterday was a tough day. We had our 6 month review with Zoey's Neurologist which ended up really being 8 months, but okay!

I had to process the entire hour visit on the 2 hour car ride home, I cried all the way home out of frustration! 

Just because you have an MD after your name, that does not give you the right to talk right through me, talk over me, rush me out, and treat my child like a number from the deli line! He saw her for 1 hour, that's it! 1 hour. What I mean by that 1 hour appointment is how could he possibly know her progress by only seeing her in that 1 hour...without letting me talk and tell him her accomplishments. Just rude!  Zoey has ASD SPD GDD and OCD...I just wanted him to listen to me...she's made leaps and bounds...he didn't listen, he didn't care!

I was told she's made little progress and I was questioned as a parent on how I work with her. "Don't you listen and get instructions from the therapists on how to work with her weekly?" I felt judged as a parent. I showed him the video of her singing and tried to talk to him about all that she has done since he last saw her....he treated her like a statistic, while I wanted to talk about my child and her accomplishments.  He treated her like a label, she is NOT a statistic. She is a human being and so am I, how dare anyone treat us other than that!!

So No, I'm not happy! I'm not impressed! When did human compassion and caring for a patient get exchanged for..."Next!"

I was talked over, talked through, talked at and made to feel like I wasn't doing my job as a parent, and my child was nothing more than generic deli meat being passed back to me, with a "come back in 6 months."

I will not stand for this!!!

I've already made numerous phone calls and she will have a new Neurologist...WE as parents know our children, we see them everyday. I would NEVER say that she has made little progress...NEVER!!

Since EI started 10 months ago, Zoey can now:

*she looks us in the face

*She hugs me

*She sings

*She wants to be around us

*She has started wearing socks and shoes

*She can eat at the table with us

*She is scripting

*She is dancing

*She comes to me and pulls me saying "I want"

*She can count to 7

*She says "bye bye"

There are so many things that she's doing now that she's never done and it's Amazing!

She stopped saying anything, including babbling at 14 months old, she hid away, she was in her own world, and I missed her!!

I don't miss her anymore!! I'm getting her back everyday...that is progress, and it hasn't been slow...this kid is Amazing!! She will be 3 in 5 months and we will then transition her to a developmental pre k program. 

I refuse to have anyone treat her less than Amazing!

So I'm currently looking for a new Neurologist, one who cares, and won't treat her like a statistic and one who will listen to me and my concerns and answer my questions!!

DO NOT LET ANYONE TREAT YOUR CHILD LESS THAN AMAZING!!! 

© 2015

Melissa Cote