Freeing my little songbird

Bright lights, loud tones or noises. Sights that are too overwhelming to focus on, the room and therefore the world has erupted into a spin of frightening chaos and your mind and your body react with fight or flight and in most cases both. You want out, you need to get out, your body can't handle this overstimulation at all. 

And like a caged bird that just wants to be set free from the entrapment that you feel, you begin to thrash around in this cage and fight so very hard to escape so that you can take flight and feel safe and at peace again. And sometimes during your thrashing and flailing around, you get hurt and destroy the inside of the cage and you don't care - you just want to get out so that you can breathe...you want to breathe and to stop feeling so suffocated and trapped. 

How do I know this? 

Because my sweet little bird, I've watched you go through this so many times and I've tried to help you and free you from this torment and torture. 

My little bird, my daughter Zoey. I watched you have such an experience just recently and it wasn't your first and I know it won't be your last. We did our best to get through it, just like we always do and always will. 

This time it was a new appointment and an evaluation with a new therapist. The door closed and the therapist locked the door and it was as if you were locked in a new unfamiliar cage, with new lights, sounds, smells, and colors all around. 

Fight and Flight commenced immediately! 

I watched as you thrashed and grabbed anything in your way and tore apart this tiny room, my little flightless bird was destroying this little cage and nothing was safe, and neither were you or anyone else who happened to be in the cage with you.

I needed to help you

I grabbed you with my arms around yours and I began to shout lovingly: "Zoey you're ok, you're ok, it's ok, you're safe!"

As I held you in my arms we fell back into 3 oversized "crash pads" and I could hear and feel both of our heartbeats so loudly. We got to our feet and before I could stop you, you quickly picked up a chair and threw it at your captor. 

I sprang into action once more as this bird raged on and this time you were flailing on your back on the floor and I rushed and hovered over you, hugging you tight as you were unable to focus and watched as you continued to scream all while still trying to fly away. 

I hugged you with my arms tightly wrapped around yours and I began to sing

"Wise men say only fools rush in but I can't help"

You focused and you made direct eye contact with me. You, my little songbird looked up at me and sang right back...."falling in love with you."

And then at that moment my little bird was set free. You came back to me. 

This is what my daughter's autism is like. 

How twenty one pilots helped me understand my daughter's stim

My daughter Zoey is 4 years old, autistic and is considered nonverbal.

She can't tell me her wants or needs or if she's hurt or sick, and as her mom I want and need to know these things. Through intense early intervention therapies Zoey has come such a long way and it has been one hell of a ride.

I found that I could communicate with her through music, and soon my nonverbal daughter started singing, not talking, singing. 

There is a song for just about every scenario in our house. If she says "No" then you will hear her sing "No more monkeys jumping on the bed"... yup that is her rendition of the word No.

Twinkle Little Star was her first song and it is her go to song if she's angry or needing to escape from the overstimulation of a situation or just from the world. 

I watch this gorgeous child stand while putting her hand up in the air as she stares into her palm, like shes seeing a magic in her hands that NO ONE else can see. And yeah, I wish I could see it!

I watch her when this happens and I'm jealous, like really jealous. This one particular stimhttps://en.m.wikipedia.org/wiki/Stimming is amazing. 

She has many stims like rocking and banging her head when she's trying to soothe herself, lining things up all around the house, and she's a sensory seeker, so she has to touch and feel everything. Sand and water are her absolute faves!

But this one stim, it is beautiful and when she does it, I know she can't answer me but I can't help but ask every single time..."Zoey what do you see my love, is it beautiful, you make it seem so amazingly beautiful?"

Oh how I wish I could see what she sees

I'm jealous

She does this stim all throughout her day with a huge smile on her face, so I know that it is angelic whatever it is that she sees, it's heavenly to her. Seriously, who wouldn't want to see that. I have tried figuring it out for 2 years now and I never could, until just recently with the help of her new favorite song, music, ah yes, but of course.

Zoey and I jam out to music all day and night. Zoey is fast paced and she's not the kinda kid to sit in front of the TV, in fact when it's on, she actually shuts it off herself.  I love all kinds of music and so does Zoey.

Music by Carrie Underwood (See you Again) and Rascal Flatts, (My Wish) Beethoven's Moonlight Sonata, Michael Buble's song Lost, she loves Imagine Dragons, and she digs Elvis too. 

So I am never surprised when a particular song reaches her. She's had so many different types of therapies, but NOTHING has done for her what music has done for her. 

Zoey communicates through music and it's awesome. I love it because I love music too, it's our connection.

Recently I have been listening to a new band and she digs them a lot. She comes running from her room if I start playing The 21 pilots song Ride, not a little jog, I mean full on marathon speed because she does not want to miss this song. 

That's how the Beastie Boys were for me at her age, so I know how much she likes this band. 

I had their video on our TV via youtube and she sat and watched it, seriously, this kid doesn't do TV so I was shocked that she didn't try or even move to shut it off. She heard her song and she was watching them sing it on our TV

A very cool moment

I had never seen this video so I was into it too

Then I saw her stim

The video was dark and then went to a bright light, darkness to light

Zoey stood up and put her hand up in the air, she smiled huge as she gazed at her palm and then she closed her eyes, still smiling, she began to twirl and spin right where she stood...she was dancing, in her own way to her own beat as the music played.

I finally understand

I get it

I've been thinking too much about it

It's really just as simple as this, it's her pure joy and love for something.

Whenever things seem to go dark, she can find a way to see through to the light.

And to me, she is pure light! 

Her world is music, she is the lead singer, she wants to dance to her own beat to her favorite song...yeah, it's a beautiful thing to see her in her world and I'm taking my time here and so glad she let me in on her ride.

https://youtu.be/Pw-0pbY9JeU

The Land of Autism

I love hearing how "our life" has been an inspiration to some of you or how you can relate to a feeling or emotion I have as a mom, and I love hearing about all the different ways you all advocate. 

I follow a lot of blogs and I have noticed that they all differ on how they decide to show the world what their lives are like with autism. We all want to spread awareness for autism, I know that for a fact. We want inclusion for our children, we want needed services for our children, we want the same rights for your children and for our children. 

I'm a "newbie" in the land of autism and my child is very young. 

Those parents right now with older kids or adult children on the spectrum have definitely paved the way for "newbie" parents like myself. I wouldn't know half of what I know if it weren't for me seeing the stories of the autism "Vets" and what I didn't learn from them, I learned from autistics themselves. 

I remember that feeling of getting my child's diagnosis and all the emotions that came along with that. I also know what it's like to want answers from professionals and not get them, and to be sent on my way to this new land, the land of autism.

 I just want to learn as much as I can here so that I can set my child up to one day live alone in this land. 

When I got here I wanted to be accepted and taken in right away, but just like a new kid at school, not everyone accepts you. I get that! It's ok, we don't have to like everyone, but...

I sure as hell am going to teach my child that if she wants acceptance in this land that she has to accept all others here too. 

In this land there are differences of quirks, stims, functionings, and most of all there are the differences in opinions. 

isn't that what makes life in this land great? 

Our life with autism might not be like your life with autism, but it is not uncommon to find someone in our community that we can relate to. Whether your child is young, old, girl, boy, whether you're a parent, a self advocate or advocating for a loved one, we all live here! 

In this land your house may be bigger and you may have more friends at your parties, and if that's the case, good for you, you've done well for yourself. 

I'm just sitting here unpacking our stuff, settling in and getting us adjusted to our new life in our new land.

 It makes me kinda sad to see the long line of those who will also be joining us and moving in here too. I know how scary it can be to move to a new place, so I'll make sure to say "Hi" and "welcome" as they come on in. 

“How’s she doing now? One woman’s story of living with mental illness

She’s different 

She’s changed 

She’s the person you once knew. 

You feel sad and kind of pity her and you may even say things like ...”she had it all, what a waste!”  

You stopped inviting her to your events, parties, and gatherings. You haven’t picked up the phone or bothered to text her to see how she may be doing and how life may be treating her. 

She’s out of sight and out of mind, until a moment in passing with a mutual friend or family member and they ask you ... “hey how’s she doing now, have you seen or talked to her lately?”

You don’t know. That moment may or may not have sparked your curiosity about her well being and how she’s handling life or thought ...

“how’s she doing now?”

So you call, text, and you even reach out to her via social media. If you call her to see how she's doing then you've done your duty and you can continue on with your “very busy life.”

But, did you really help her to get the help that she so desperately needed to address the mental health issues that she didn’t even realize that she had? 

When you finally do reach her, she eagerly accepts your invitation to talk because she is ready and has been waiting for this conversation. She’s played this talk out over and over in her mind for years and she is more than ready to confide and talk with you. 

She explains to you that she is tired and she explains to you that she realizes that her life is not what she had expected or how she thought it would be. She goes on explaining to you that she is “awake” and fully aware and that she truly understands now. She tells you that through years of intense therapy, she has realized that she had dissociated for ten years from the traumatic events that she experienced from early childhood and that even more trauma continued on into her adult life causing her to decline even deeper into dissociation. 

She tells you that she understands that the traumatic events in her life had caused her to become extremely sick. She tells you that she is mentally ill and has been for her entire life, unbeknownst to her, until now. 

She explains to you that this is a scary new realization for her and that she is sad to come to terms with what her sickness has taken from her. She bears her soul to you even though it terrifies every fiber of her being.

She shares with you the daily pain that she carries around with her over the relationships that were damaged, lost and the ones that are beyond repair. 

It took her ten years to realize that she was “sick” and that has been something that she has been diligently working on with the help and guidance of trained professionals. She tells you that she has finally found “her army.”

It took her ten years to finally become “awake” and finally “come to” and she has found her “true self” after years of being lost. She missed out on so much and she wanted you to know that. 

she wondered and asked you ...

 “why did no one try and help me?”

You see, she had learned that those that were closest to her, they knew just how very sick she was and that she was living with a severe mental illness, even though she had not realized that herself. 

She was left to deal with her own suffering and lived in isolation. She was cast aside and put out of their sight because “she was out of her mind.” 

No, not “out of her mind” she was just living and suffering from a mental illness that stole ten years of her life. 

So she asked you why? 

“Why didn’t you tell me that I was sick if you knew?”

You didn't have an answer for her

She broke down and cried and wanted to ask you more but she stopped. She did not want to hear your answer for fear of being cast away again and feeling rejected by you. She wasn’t ready to be cast away again or anymore. 

You see, she had already been stung and was hurting and trying to heal from the pain of a conversation that transpired with a family member, a family member whom she confided in and bore her soul to, only to be told ... 

“I’m glad that you’re finally trying to make things right!”  

- A harsh and rather insensitive comment to make, seeing how she had done nothing wrong to “make right” and was unaware of her mental state. 

She has an invisible illness, mental illness in fact and she finally knows that. 

The stigma surrounding mental illness is undoubtedly real. It makes it damn near impossible for those that suffer from their illnesses to want to talk about it, share their struggles with it, and even harder to ask for help with it, especially if they are unaware they are suffering from it. 

If you’re wondering “How’s she doing now?”

Thank you for asking, I’m doing ok and managing as best I can. 

Are you aware of autism?

April 2nd is autism awareness day, however people who advocate for autism awareness like myself, well...we take the whole month of April, and parents of children with autism, like myself...we do it every month, every day, we actually use 365 days a year to spread autism awareness.

Autism or also commonly known as Autism Spectrum Disorder (ASD) is a neurological disorder that can have a wide range of symptoms. Often people with ASD are referred to as being on the "spectrum." Symptoms of Autism Spectrum Disorder (ASD) vary from children and adults being considered mildly impaired by their symptoms, while others are severely disabled by their symptoms. 

The puzzle piece is the well known symbol for autism. Over the years, there have been many debates over the puzzle piece. Some advocates argue that the puzzle piece is implying that something is missing from them and that the puzzle piece is implying that they are not whole. 

The puzzle piece was created by Gerald Gasson a parent board member for the National Autistic Society (FKA The Society of Autistic Children) in London in 1963. The board viewed autism as a "puzzling" condition...hence the puzzle piece. 

I believe it is up for interpretation. 

I like so many other parents of children with autism found support online. I found that each person had their own story to tell and I quickly realized that we all wanted the same thing for our autistic children and autistic loved ones, awareness and acceptance. Not long after arriving in my new community of fellow parents with autistic children, I heard all about one of the biggest autism awareness pages on Facebook, Ink4Autism. This guy was spreading some major awareness and he inspired me to want to do the same.

Awareness can be done and seen in so many ways; bumper stickers, charity walks, personal blogs, like mine https://www.facebook.com/Life-With-Zoey-452893538181979/ fundraisers, and even tattoos, yes tattoos. 

Autism tattoos take on many forms, from the simple puzzle piece designs, to a butterfly with puzzle piece wings, I've even seen the Superman emblem in puzzle piece design. Autism tattoos range in design, no tattoo is the same, which is true with autistics. "If you've  met one person with autism, you've met one person with autism" and my personal favorite, "different does not mean less!"

I had the pleasure of speaking with Jack Skorochod, founder of Ink4Autism. Jack spreads autism awareness everyday, with over 100k followers, Ink4Autism is one of the go to pages for so many in the autism community, I had to know how and why he started his cause. 

This guy looks pretty tough, covered in ink from I'm guessing head to toe. Some may say he is intimidating, in speaking with him, he definitely smashes the stigma that tattoos are just for thugs. He's a husband, a father, has a passion for tattoos and a love for his family. 

We spoke about his organization, Ink4Autism and how it came to life. 

"I've always been into tattoos, even at a young age. I've always loved the beauty of them.  Although, I didn't get my first tattoo until I was 30 years old. Yeah, but I've more than made up for it since then. I have tattoos dedicated to my wife, sons, family, as well as some memorial tattoos. When my son Lincoln was diagnosed with autism at 5 years old, it seemed only natural that I get a tattoo to show respect and honor to his autism" says Jack.

The idea for Ink4Autism happened in November 2011 when Jack had stopped into one of the many tattoo shops that he regularly frequented. It was at this time that he walked into the into the Lost Anchor Tattoo Parlor while they were running the "Movember" fundraising campaign. "Movember is an annual fundraising event where people grow out mustaches to raise awareness for various cancers, like prostate cancer. This shop was doing mustache tattoos with the proceeds being donated to the "Movember" campaign. 

"A lightbulb went off...why not for autism?" says Jack.

The switch was flipped and Ink4Autism was born. If you are involved in the autism community, then you have definitely heard about Jack and Ink4Autism, with over 100k followers, this guy is spreading some major awareness. Even with having a massive following, he's humble and the passion he has for his cause shines through. He is a true advocate. 

"My first year I managed to get 18 shops in the US and here in Canada to take part. Some were friends of mine, others were shop owners that I had found online that had already done some fundraising events at their shops, so I knew they would be open to helping out for autism, and thanks to social media, other shop owners found out about it and they contacted me to join and support the cause. People would find out about it through our Facebook pagehttps://www.facebook.com/Ink4Autism/ and they would tell their artist friends about it. By the second year I had about 75 shops and had added Australia and the United Kingdom to the list, and it has continued to grow each year" Jack explains.

Ink4Autism is a one of a kind fundraising initiative. Since 2012, I4A has been helping spread autism awareness on a permenant level with autism themed tattoos. During the month of April, you can go into a participating shop to get an autism themed tattoo and the funds are donated to numerous autism charities. 

Tattoo shops in 11 different countries around the world have participated in this campaign and since 2012 Ink4Autism raised over $80,000 for autism services. 

"Our autism tattoos act as a permenant showing of love for those with autism in our lives. We are smashing the stigma that tattoos are for thugs, and we are raising awareness for autism at the same time. I proudly display that inked love until the day I die. I love hearing the stories of people that NEVER would think of getting a tattoo, and they are getting an autism tattoo to support their loved ones with autism, and to me the most touching tattoos are the sibling pieces. As a dad, watching that kind of support from a sibling is incredible, something I get to witness every day with my own kids" says Jack. 

 I love the puzzle piece and I don't agree that it implies that something is missing from my child, my daughter was the missing piece to my life's giant puzzle and now I have my lost piece.

I asked Jack what the puzzle piece symbol meant to him and this was his answer. 

 "I see the puzzle piece as the mystery of autism. It's just one of the parts that make up my son. I know others don't see it that way and it's alright to have someone see something differently than I do....and neither of us is wrong, because we are all on the same path."

Yes, we all want awareness, acceptance, and inclusion for all...and a tattoo, I think I really want a tattoo now. 

Melissa Cote

https://www.facebook.com/Life-With-Zoey-452893538181979/

www.melissaacote.blogspot.com 

How I explained sensory processing disorder to my 4 year old

You know that feeling of irritation you get if the tag on the back of your brand new t-shirt is scratching up against your skin, it bothers you until you take it off and take the scissors to it, or it drives you to madness and you just rip it off, not even bothered if you end up leaving a hole in your new shirt.

What about that pair of socks that you thought would fit and feel just right, and half way through your day, you realize they do not feel or fit just right and you are taking them off in a mad frenzy so that you can feel free and breathe.

And then there's that feeling of having someone put their hand on your back, or trying to hold your hand, wanting to hug you, or even kiss you...it actually hurts you, and you can't explain it, you just can't. So you avoid affection because that is your way of protecting yourself from the pain of human touch. 

How do I explain this to my beautiful little girl? She's 4 years old and I didn't know how to explain it to her, how do I explain it to her in a way that she would understand? How do I explain that her younger sister has severe Sensory Processing Disorder? 

Zoey is 3 years old, she's diagnosed with autism, global delay, ADHD, dyspraxia of speech, and severe sensory processing disorder. 

That is hard enough for me to understand, never mind the idea of my 4 year old understanding it. 

I put it off, and I would say to her that her sister is "different" and that "different" isn't bad. 

That explained nothing, I was taking the easy way out. Just telling her that her sister is "different" wasn't cutting it. She watched as her younger sister had a year of intensive in home therapies with multiple therapists, all of them with their own special bag of toys, all coming to play with just her little sister. My big girl watched, and everyday said "what about me?" I saw the sadness in her eyes and I watched as my big girl was feeling left out and confused. 

She watched as her little sister got so much more attention and she started to regress herself, because "what about me?" was how she felt, and if she was "different" like her little sister than she would get to have all the extra attention and play with all of the therapists special bag of toys, just like her "different" little sister. 

I had no idea what to say, what to do, and how to help them both...I needed to help them both. I took my big girl aside one night and we had a talk in her room, just her and I and I was not sure how this talk was going to go, but it was time to explain it to her in a "different" way.

I looked at my beautiful 4 year old and I said "You know how you have "itchies" on your arms and legs (eczema) and they bother you so much that you scratch em until they feel better, but they don't ever really feel better until mommy gives you lotion to help?"

My big girl looked up at me and she said "yes, those itchies hurt so bad and I scratch and scratch and it doesn't feel better until you help me."

I said, "yeah, I help you to make those "itchies" not itch so bad. Your "itchies" are on the outside, and we can see them and we know where they are...well "sissy" her "itchies" are on the inside and mommy can't see them, so I help her by giving her "squeezes" (deep pressure message on her arms and legs) so she doesn't itch so bad. 

 I know that saying she's "different" wasn't working for us, and I finally found a way to explain sensory processing disorder to my beautiful big girl. 

A letter to moms like me

"In case of emergency call..."

I get stumped by that question every time I see it. I always put my husband and his information down and I'm sad to say that I don't have a back up. 

I don't have anyone to talk to about how hard it is to be me, never mind how hard it is to be a mom, like me. I struggle with my own illnesses and disabilities, while raising 2 beautiful little girls, the youngest, also living with disabilities. 

I don't know what I'm doing, I've never been trained, and I'm scared every single day that I'm screwing it up. What I do, directly affects my children. The type of people that they will become rests in my hands, and that is a lot for one person to handle. 

I don't have anyone to come over my house and relieve me for a day, I don't even have anyone who could do it for an hour. My kids are with me 24/7 and I'm not exaggerating. 

My husband works hard, very hard to provide for us, and that means working 6 sometimes 7 days a week. Kinda funny, huh? He's my "in case of emergency call" person. I'm pretty sure I'm his too. It's also kinda scary because that's a lot to put on just one person. But, when that's all you got, that is literally all you got. 

There are no "hey let's take your kids for the night" moments, and there are no "why don't I watch the kids for you so that you guys can go out to eat."

There are appointments for me that I make and hope I can go to, and then feel so very badly when I have to call and reschedule, for like the fourth time. I sometines feel like the next time I have to reschedule that I'm going to be scolded by the receptionist or have them answer back saying "and what's your excuse this  time?"

Being a parent is the hardest job in the world and then the addition of raising a child with special needs, well it's pretty stressful. it's nice to have support and family to help you out when you are in need of help or to just be there when you need to talk. It's nice to know that you're not alone and that your support system has your back. And if you have that, that's great and I'm happy for you. 

But, I'm gonna let you in on my deep dark secret that eats at me, I try not to let it, but I just can't help it. 

I'm kinda jealous! 

We have respite, but it's no where near enough, does anyone really ever get enough respite? 

We are extremely limited on who we can have care for both our children, we need to make sure that each child's needs are met and we have to have someone who is available, that's the hardest part. 

I really have to tip my hat to single mothers, military families, and families like ours with limited support and resources. This is not an easy job, and no one knows more than I do how hard you work. You give me strength and you show me that if you can do it, I can too! 

 I applaud you, I salute you, and I thank you. You're my back up "in case of emergency."

Just thought you should know! 

A Life Advocating For Others

"Let freedom ring"

These were the words used by Dr. Martin Luther King.

He cared enough to give his best, 

never tolerating violent protest. 

He did not support the idea of silence,

and he did not agree with the method of violence. 

"Let freedom ring"

These were the words quoted by King.

He preached about love for every single one of us, 

No more should anyone sit in the back of a bus. 

Peace and equality were always front and center of his mind, 

advocating for everyone to be considered  part of mankind. 

"Let freedom ring"

These were the words often spoken by King.

He believed in equality and treating one another like sisters and brothers, 

and with this belief he dedicated his life to serving all others.

He did what was fair and always what was good, 

he gave to those in need, all that he could.

"Let freedom ring"

These were the words echoed by King.

He did not believe in the words "separate" or "segregate,"

he preached about love for all and how not to hate.

For him it did not matter the color of one's face, 

in his eyes, we were all equal and of the same race. 

"Let freedom ring"

These were the words announced by King.

We've heard his speech and about his dream, 

righteousness and determination were part of his theme.

He longed and hoped for a better future for his children and his wife, 

in doing so he sacrificed his own precious life. 

"Let freedom ring"

These were the words heard by King.

He has been honored and quoted long after his death,

leaving me wondering what was said in his last breath.

I know what I would have said if I were Dr Martin Luther King, 

"Let freedom ring!"

"It is NOT a race issue, it is NOT a gender issue, it is NOT a status issue, it is NOT an abled or a disabled issue...it IS a human rights issue!" - Melissa Cote