Friday, July 10, 2015

Why I turn to Michael Buble when my daughter with autism 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's okay, I can make it'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"

Sunday, July 5, 2015

In our house the little things are big things

Moms and Dads you know what I'm talking about. When your child thinks and acts like you are their everything, their go to person, their superhero, they run to hug you when you come home or jump on your bed to wake you up in the morning, and when they hug you and want you to hold feel it! You feel their love for you. I'm here to say Please don't ever take that for granted. 

One thing about Autism that hurts, is watching your child withdraw so much from you that you no longer are "their person."

No kisses, No Hugs, No Snuggles, No holding hands, No jumping on your bed waking you up, No naps feel like you are not "their person" and you fear that you might never be. 

I watched this firsthand with Zoey. I remember holding her as a baby and kissing her face, hugging her, holding her, I watched her come to me as she learned to crawl and walk and I was "her person!"

Then I wasn't! 

I gotta tell ya, it hurts to love someone so much and then have that someone treat you as a stranger. I tried to hold her, I tried to hug her, I asked for kisses...she pulled away every time. 

I wasn't ready! She was a little over a year old and it was like she wanted to move out and be away from us...I wasn't ready for that, I still had 17 years to prep myself for her to live her own life and do her own things, I wasn't ready for that at only a year old! 

To put your arms out to reach for your child and she backs away with her arms half up as if I were a stranger to her...there is no way to explain that kind of emotional hurt. 

You see your friends holding their babies and cute pictures all over social media and you think, "Why...what did I do, why won't my baby come to me, why am I no longer her person?"

And yeah you get jealous, really jealous! And yeah you hate looking at social media and seeing all these cute pictures of moments that you so badly want...and you cry! 

But I'm her Mother and I never gave up, I never stopped trying to get those hugs or to try and hold her. I wanted to hold my child so bad and so much so that I showed her that it is okay, I can be her person, slowly I would get close to her and put my hand on hers and just show her that it's okay. This went on for months. Meltdowns and tantrums for being a 2 year old who is nonverbal, developmentally delayed, and diagnosed with Autism and Sensory Processing Disorder, my child was uncomfortable in her own body and surroundings. I had to learn that! 

With baby steps and intensive in home therapies, Zoey has come a long way, I journal it all so that she can look back and see how hard she's worked. I'm so proud of her! She has done a lot of "firsts" lately and it is Amazing to witness. 

After a year of therapies, I get hugs, she wants to sit with me, I can hold her for a short kisses yet, but that's okay! 

I'm okay with it, we have a bond, I am her person! 

Today was one of my favorite "firsts" she lay down to nap and I lay next to her and we took our first nap together! My husband took this picture and if it never happens again...I'm okay with it, because I have this picture, this moment, and I know I'm her person! 

Melissa Cote 2015©

Wednesday, July 1, 2015

She gave me her voice and changed my life

I wrote a blog awhile back titled "Moms of children with Autism should be called Big Bad Mama Grizzly Bears."

And I am often referred to as an East Coast Mama Grizzly...I'm proud of it, I gladly accept the title. 

I was shy, non confrontational, I was the push over, and a people pleaser. I didn't know any other way to be. I didn't want to argue or fight or have any conflict with anyone and most times my kindness was taken advantage of and it became a weakness. 

Let me tell you, when you become a Mother your life changes. You turn into that Mama Grizzly protecting her cub, it waits inside you and when your cubs are born, you too are reborn. 

My daughter Zoey had an evaluation last June when she was 19 months old...we were strongly urged to get a diagnosis because at 19 months, Zoey had the communication skills of a 6-8 month old. 

I went into action and I called and called until finally someone was willing to give me an appointment so that we could get the diagnosis that we were so strongly urged to get. 

I was met with extreme opposition and just plain old rudeness. I was told that there would be a year wait, now I knew that Early Intervention was vital and that if we waited a year, Zoey would be 3 and she would miss out on so much...I couldn't wait, I wouldn't wait.

The receptionist rudely said, “So do you want me to pull the referral?”
I was speechless, only sobs came out. I managed to utter, ” I don’t understand, her doctor put a RUSH/STAT/ASAP on the referral, I don’t understand,” as I sobbed and pled.
Not once did I hear an, “I’m sorry… I understand your fear.” No, I again heard, “So… do you want me to pull the referral?” I sobbed. “Yeah, I guess… I don’t know what to do… I can’t wait, she can’t wait… I guess I have to call somewhere else.” I hung up.
There’s no bigger hurt than trying to fight for your child and to be shut down.
Well… that’s where Mama Bear kicked in. I called the hospital back after I composed myself and I asked for a supervisor… I was going to be heard.
I got a department head on the phone. This was our conversation.
Me: I’m putting you on notice. The way that woman treated me was uncaring, without compassion, rude, and she made me feel like my child was nothing. I’m telling you right now, my child means something; she is something. For a hospital that prides itself on the care of children, you failed when it came to mine. I’m putting you on notice. I will go on every single autism blog and website, and I will tell them and the autism community that you do not care about children with autism.
Department Head: I’m so sorry you were treated that way… your child means something to me. Do I have your permission to log a formal complaint?”
I said yes. I finished my day with no hopes of anything, just the satisfaction that I stuck up and was my child’s voice.
The next day I got a phone call from the hospital. We had an appointment and her diagnosis 17 days later.
I stood up for my daughter, I stood up for myself, I stood up for us! I was her voice, she gave me her voice. Without out me standing up for us, Zoey would have waited a year and we would not have the Amazing progress and results that we do now. Early Intervention was vital for my child. 
She gave me strength, courage, and her voice, and given the chance I'd do it all over again. I stood up for my child and got her diagnosed with Autism Spectrum Disorder, SPD, OCD, and Global Developmental Delay before she turned 2 years old, and instead of waiting a year for services, she has been getting services for over a year! 
Don’t ever give up. Find your inner Grizzly… be your child’s advocate and his or her voice. This is why I’m proud to say I’m a Big, Bad Mama Grizzly Bear!

© 2015 Melissa Cote