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