Wednesday, October 25, 2017

The scars, and stitches of my broken heart

A broken heart; most people experience it once or maybe even quite possibly hundreds of times in their lifetime. I can't keep count of my heartbreaks anymore. When something breaks you wanna fix it, a broken heart can't really be made completely whole and fixed again....but it can be stitched

My heart has many stitches, so many that my heart looks like the character Sally from The nightmare before Christmas. The stitches are not sewn very well and they are fraying and sometimes the stitches of my broken heart are weighed down by more hurt and heartbreak, like a dam about to break apart and overflow massive amounts of water that are my tears.

That's how I would explain my heartbreak and stitches and scars.

My heart is holding onto a giant overflown dam of tears of pain that's ready to burst and the stitches on my heart can feel it. Every heartbreak is hanging onto my heart with the weak and tired thread, because, I will let you in on a secret, I can't sew, at all, never could, I've tried, I just don't get it. I did the best I could to stitch my heart up as best as I knew how.

I've patched it, covered it up, masked it, but my heart is still there hanging on by tired threads. And just as Sally picks up her pieces and carries on and pushes through, that is what I will continue to do so too.

The thing with broken hearts is, that, the heart isn't the only part of my body affected, emotional hurt wreaks havoc and rips away at the tiny worn threads of my heart and leaves emotional stitches that can't be seen, much unlike Sally's stitches, they are visible on the outside and she is sewn together with leaves, how very similar are we, except for the fact that Sally knows how to sew herself together.

We both want happiness and peace and to feel whole and yet we still feel the need to have to hide away from what caused our stitches and heartbreaks.

 In the end doesn't it all come down to love and loving someone, the deep unconditional love that you have for someone other than yourself. Wanting to fix the broken hearts, stitches, pain, and hurt for those that you feel are more heartbroken than you, or in need of more stitching than you.

 We try so hard to protect and defend those we love that we don't realize that we are actually slowly pulling our own stitches apart and causing more heartbreak for ourselves.

Sally is falling apart and the water flow of broken hearted tears that has made up the dam that is my heart is busting my stitches loose.

What I've learned from this beautifully broken stitched up doll is that we are both willing to go as far as we possibly can go to help those that we love and care about, so far so, as to sacrifice our own well being to make it so, we are the "helpers" the "healers" the "fixers" and the "lovers" to everyone but ourselves....and so our hearts break easier and our stitches loosen quicker than most.

Until we find "the one"

That one, That one that loves you just the way you are; broken hearted with loose stitches, scars and all. The one who asks to sit with you in the dark under the light of the moon and sings

"My dearest friend, if you don't mind I'd like to join you by your side where we could gaze into the stars and sit together now and forever, for it is plain as anyone could see, we're simply meant to be." - Jack and Sally

Tuesday, October 17, 2017

How Cinderella made my autistic daughter feel like a princess

Birthdays are supposed to be fun and exciting for little kids, I know my six year old, Anna is already planning her next Birthday party and theme the night after her 6th party ended...that excited.

Birthdays were always so exciting and fun for me too, so much so that I would have my girls parties planned and ready to decorate months before the party.

That changed for me a month before my youngest daughter, Zoey turned 2 years old. The month before she turned 2 years old, Zoey was diagnosed with severe nonverbal autism, global developmental delay, dyspraxia of speech, and would soon be diagnosed with extreme ADHD

I tried to pull myself together enough to plan her birthday party, and do it just like I had done her 1st birthday party, how I had done 6 of her older sister's birthday parties. Her 2nd Birthday didn't go as I had planned and I would realize that none of her birthdays would go as planned again. I tried, each year I tried. 

Her 3rd birthday was too loud and she was on sensory overload, she didn't know how to blow out her candles, and we didn't sing Happy Birthday because she started to cover her ears from the noise, I took some flack for not singing the Happy Birthday song from some family, but I did what was best for my child and will continue to always do so.

Her 4th Birthday was a beautiful sunny day and I invited just small a group of family and friends and I did an ice cream social. Ice cream is her favorite and I thought why not build your own sundaes.

She saw everyone gathered around and immediately came over to me to escape the small crowd, I knew it was too much, she wasn't comfortable. She motioned for her and I to go inside, and I granted her that, after all it was her day. While our friends and family still gathered outside eating cake and ice cream sundaes, Zoey and I played with some of the very cool sensory toys that she had gotten as gifts from her friends and family.

Being social is very difficult for Zoey, if we have company she usually retreats to her sensory room for a "break" and I respect her wishes every time.

I had no idea what I was going to do this year for her 5th birthday. I know that 5 is a milestone birthday and with school and therapies she had come along way from years past. 

I noticed she was listening to the original Cinderella cartoon songs on her tablet and she would sing along with Cinderella to the song "Sweet Nightingale" and to see her sing it was beautiful, and soon she started watching the cartoon and she never went to shut the TV off, which she usually does, she actually was enjoying it and captivated by it. It made my heart happy to see her enjoy something, Zoey liked Cinderella.

I did some research and I found a company that does Princess Parties. Precious Parties By Kayla. I got in contact with Kayla and I asked if she would come visit Zoey on her Birthday, she was so thrilled to be a part of Zoey's special day and so we booked her. Cinderella was coming to Zoey's 5th Birthday.

Again, I invited just immediate family and close friends and as our guests arrived Zoey took their presents from them and opened them right away, I agree, who really wants to sit around and watch you open presents and be the center of attention. Everyone else thought it was great too.

Cinderella soon arrived not long after our guests and all the other children squealed with excitement while Cinderella sat down on our floor and gathered the children around her to show her what she had brought them. A treasure chest full of trinkets and fairy wings, and then she grabbed out a Cinderella book, looked right at Zoey and pointed to Cinderella on the cover and then at herself and Zoey said "Cerella." 

Zoey knew that Cinderella was here at our house. It was overwhelming for her and she took many breaks. Cinderella did face painting on all the other kids while Zoey sat on the couch having me give her deep compression (squeezes) on her legs. My husband came over to us and he said "Cinderella is here for you baby girl." Zoey kept taking my hands to do deep compression on her legs, as I looked up at my husband and said "we tried, we tried."

Zoey was definitely intrigued by this beautiful Cinderella at our house and she actually went up and approached her 3 times. I was moved and close to tears, because no matter what Cinderella was doing, face painting a child, answering a question, whatever it was she was doing she stopped all 3 times Zoey approached her, and she treated her like the special little princess that she is, and that meant everything to me.

We brought out the cake and we sang Happy Birthday to Zoey this year, and this is the first year that Zoey blew out her candles. Cinderella cut her cake and then took pictures, signed autographs and then said her goodbyes, and off she left on her way back to Prince Charming.

Thank you Cinderella for making THIS birthday special for my special girl, and it went exactly how I had planned.

Sunday, October 8, 2017

The Ferris Wheel that is my depression and anxiety

There is a lot resting on my shoulders and it's starting to hurt as it pulls me down. I try to stand up straight, but my body is weak from holding itself up for so long. The weight of the world is heavy and I'm trying hard, but I can't carry the world on my own anymore. 

It's time to let you in
It's time to tell you

I'm sorry, as I feel as if I let you down, and I'm not what you planned, or thought I would be. I'm fragile, weak, broken, and scarred, and no matter how hard I've tried, I still can't seem to heal. I feel bad for the life that you thought you would have, and I have guilt from feeling like I've robbed you of happiness and peace. 

It feels like you live in one world while I live in a completely different world. My world wreaks chemical havoc on my brain every moment, and it doesn't stop for me. It's like riding a Ferris Wheel and wanting to get off when it stops, but I can't ever got off, no matter how badly I want to, I am pulled and lured in my seat on this rotating wheel of torture.

I've tried to explain this wheel of torture to you so many times and you say "just get off the ride." If it were as easy as that I would have years ago, because I don't even like Ferris Wheels, they scare me and make me dizzy. What you don't know is, that I've actually been on this ride for so long, longer than you and I have been together. I learned to fake it and pretend that I could handle the ride, and I latched onto unhealthy ways of coping with it. Something I hid very well, because I had years learning how to survive the treacherous wheel, and I accepted it as part of my life.

I felt like if I told you about the wheel that you would try and sit with me on it, and I didn't want you to be stuck on the ride with me, but what I didn't realize was that even though you were not in the seat with me, you were watching me on the wheel and just as dizzy as it makes me, it makes you even dizzier, watching me go around and around and around, spiraling into sadness, fear, guilt, regret, self loathing, I look down at you as you watch me and I can't imagine watching someone take a ride like that.

But you stay and watch and you hate the wheel too, but you love the passenger, so you stay, waiting for the moment that the wheel stops so that you can get me out of the spinning seat, and on the days when you can, I am grateful, tired, but grateful. When the ride pulls me back into my seat, you are there waiting for the next time it slows down enough for you to catch me.

For better or for worse, in sickness and in health

So to you, my husband, my best friend...that is what my depression and anxiety is like. I'm sorry you have to watch it, you try so hard to understand what it's like for me, and I have never known how to explain it to you, I will tell you that it's a never ending ride that I have a lifetime pass for and I don't get to decide when I can get on or off, and I can't control the speed or the amount of times I am on it. I hate this ride and I will never ask you to sit with me in my seat, but I promise to tell you when the wheel is too much and I promise to yell out when it makes me sick and I promise to tell you when I need you to talk me through the scary parts

I'm sorry that I never told you about the wheel
I'm sorry that the wheel makes me sick
I hate the wheel

your wife that struggles with spinning wheel of depression and anxiety

Saturday, August 12, 2017

My Daughter is Different and so am I

My child is amazing, truly freaking amazing. She is everything that I want to be. 

When I'm tired and I think that there is just not one more day that I can possibly push through, I look at her progress and I push myself to push on through, on days when I feel like I can't even get out of my own bed. Zoey pulls mentally pulls me out, that's what my depression does to me. I am a mom that struggles with illnesses of my; major depressive disorder, anxiety, and panic disorder, complex ptsd, and Fibromyalgia 

3 years ago on a day in August, my husband and I drove 2 hours away to have a specialist confirm what we had already suspected...autism had chosen our child.

Getting any kind of diagnosis is a shock, nothing prepares you for it, and if you think you are prepared, well that preparation crumbles in the wake of a specialist looking at you and telling you that there's something wrong. 

When it comes to your child, the last thing you want to hear is that there is something wrong, you don't want to be handed pamphlets and told to find a support group. 

Even after they looked up and asked us, "do you understand what we just went over with you?" 

We shook our heads yes, obviously we were in shock because we didn't understand what we were in for 

We were exited out and then shown where to get onto an elevator. I looked up at my husband who was holding onto our almost 2 year old and I asked him 

"what do we do, what happens now?"

"It Changes Nothing, she's still our happy child."

I tried to accept that and believe him as he said it to me, but it did change everything for me! 

I stayed up every night, researching, blaming myself, even blaming my own illnesses, what had I done wrong. So I cried, sobbed, grieved, I got angry, and I spiraled into another bout of major depression, one of many in my life. 

These emotions of sadness, fear, and anger, well they lasted for more than over a year for me, and on the days that I had thought I had settled up with those emotions, they came back looking for more from me. A vicious emotional cycle of tug of war that I was really tired of fighting, and I realized that I needed help and so I started seeing a therapist  and soon I stopped fighting those emotions and I released them, I stopped blaming autism for choosing my child and I stopped the love hate relationship that I unknowingly had with autism. 

I realized I was discriminating autism, not my child, but autism. I was treating autism poorly and making autism into something scary and wrong...why, because autism is different, we are all different. 

Yes, different can be scary and we can be afraid of the unknown, but everything and everyone deserves a chance to show you just how beautiful different can be. I tell my children that just because someone or something is different, "different isn't bad."

 Zoey's autism saved my life! I know it sounds silly and like I'm trying to kiss autisms ass for "likes" but it's true...autism saved MY life. 

If not for Zoey's autism I never would have woken up and embraced my own illnesses and I wouldn't be the mom I am today, not just for my kids, but as a person. I became Zoey's voice when she had none, her advocate when needed...always her mommy that loves her. 

In being Zoey's voice, I found my own voice, in helping to fight for Zoey's needs, I learned to fight for my own needs. Getting Zoey's autism diagnosis helped me understand my own diagnoses and something inside me woke up and I realized autism doesn't discriminate and that no one should discriminate and that in talking and sharing, maybe we can end the stigma surrounding "differences."

In Sickness and Insanity

 My husband and I were married in 2009 but we've known each other for over 20 years.  We were friends, then more then friends, and then back to friends. Then we were friends that lived on opposite ends of the Country and only communicated a few times via the computer and 1 letter, this was long before texting came along and we are not the talk on the phone type people...still aren't phone people. 

My friend who would one day in May of 2009 become my husband was serving our Country in The United States Marine Corps and for 8 years I worried and prayed that he was ok and safe. I would watch the news and cringe at where he was and what he was doing and what he was witnessing and I wished for him to come home safely. 

While he was fighting a war for our Country, I was here in our hometown fighting my own war. My war was internal and intense and scary. I fought horrific memories and images in my mind and my mind took me to dark places that I couldn't get out of, it trapped me in a tunnel of sadness and fear with the demons inside my mind making it hard to pull myself out of debilitating bouts of depression and crippling anxiety and extremely painful panic attacks that left me clenching my chest praying it would pass as quickly as it came on. My demons are flashbacks and images that replay over and over in my mind, a slideshow of moments in time that haunt me day and night. A slideshow that I can't turn off, because if I could I would in a heartbeat. 

This slideshow of traumatic moments forever changed me as a person. It stays with me and it decides when or what it will show me, that is the demon of post traumatic stress disorder. 

Some people have 1 traumatic event that takes place in their lifetime, I'm not like some people, I'm different. I've experienced multiple traumatic events throughout my lifetime starting at the young age of 2 years old and just like throwing a dart and aiming for the center, I was the target of traumatic events and eventually I just gave up and waited for the darts to keep coming. 

For awhile the darts stopped and I forgot about how bad the darts stung the red center of that of which is my heart and I tried to live my life as best I could, still knowing that at any moment a dart could be thrown my way. 

A few years went by without any darts, although the sting of the darts from years before were enough to keep me from wanting any more to hit my red center. 

I like many others that suffer from complex post traumatic stress disorder adopted some unhealthy coping mechanisms. Substance abuse and depression are kind of a package deal when you're trying to silence the demons in your mind that keep wanting to show you the horrific slideshow of traumas that you've tried so hard to store away in a sealed box. Each time that box even slightly opens up, the slideshow starts, and you would try and would do anything to make it stop and slam that box shut. 

That's exactly what I did! 

I kept the box closed by trying to forget it was there, and so yes, I self medicated. It was at that point in my life where I would have my first suicidal thoughts and I would then seek professional help with a counselor and psychiatrist...I was 21 years old

Through therapy and medications I would abandon my unhealthy ways of coping and hurting and I forgot about the box and the darts and I was able to live my life, I had a career, goals, and my friend came home from his war and as fate would have it, we found each other again. 

We never spoke of our demons from our wars. Instead we laughed, we lived, and we loved. 

The year before we married a big dart came at me and it hit straight on, piercing my red center decimating my entire board. The box in my mind that I had held closed for years immediately broke open and the slideshow was loud and stuck on repeat and I couldn't stop it, because the box was now destroyed and the slideshow was all I saw, day and night, every waking and non waking moment. 

Something happened to me, I became physically sick, not like cough and cold sick, this was I lost the ability to walk, drive, hear, I couldn't function and live independently, I was disabled!

I had no idea what was happening, I walked with a cane, my soon to be husband became my caretaker, he helped me shower, dress, walk, he made my meals, and helped me live. He never complained, he never left, even though people told him he should, he didn't. 

I was in the darkest depression I had ever been in and I was suicidal. Family urged me to get help and I complied. I was being treated for my symptoms of major depression, anxiety, and panic...but I never spoke of that last dart, that last horrific traumatic event that had me in therapy every week, that had me on multiple medications. I thought that I was in therapy because I was sad, sad and depressed for being physically ill

I had no idea why I was really in therapy and why I was on so many medications. I had no idea that I wasn't really physically ill at all.  I had NO idea that I was mentally ill.

You see, I never spoke of the box or the slideshow or the darts to anyone. I did my best to conceal it and hide it from everyone, including myself and apparently I had done a damn good job at it. After that last dart that blew everything apart, my brain did what it needed to do to keep me safe, and for 8 years my brain told me that I had a physical illness rather than a mental illness. 

That last dart triggered me to dissociate myself from that trauma all together. I had Dissociation Identity Disorder (DID) for 8 years. 

My friend, my husband, he never left and I've never thanked him for that. So here I am saying to you my friend, my husband, right here right now....Thank you for loving me through sickness and insanity and please always know how much I love you for loving me, just the way I am. 

Sunday, April 9, 2017

No one in my family talks about mental illness

What's worse

Having a nervous breakdown and not knowing it, spiraling down into a black hole of psychosis, dissociation, mania and bouts of debilitating major depression for over 8 years. Stuck way down deep into the abyss of your own mind. 


Realizing that your family knew that you were in this hole hurt, and suffering but left you alone in the dark without any help, without a ladder, or rope or any way out...nothing left for you to help you get out and escape this dark hole...they left you in the hole, alone and covered it up

I can personally tell you - they are equally as bad and as painful, I don't think I could pick which one hurt me more

Let's flip a coin...
Tell her
Don't tell her 

Is it really that easy? 
Did I really not matter? 
Is it really that hard to talk about?
Did no one really give a shit about me?
Was this hole where you left me acceptable by your standards? 
Did you think I could get out by myself, without help? 

I guess it was easier to hide it away, just as I have hid my own self away as I struggle to find air and breathe in the dark and scary abyss of my own tortured mind. 

I'm awake now and I realize I'm still in this hole, I know you left me here, and it hurts that you would just leave me like that. 

As I go through this awakening and try to save myself, I still feel as if I can't talk about it - no one wants to hear about where I've been, how I got down so deep into this hole. They just want to cover it up, and forget that I was swallowed up and left alone, in the dark. Forgetting about the hole and that I'm in it - Well, I can't do that anymore. 

I'm here
I'm in this dark hole
It's scary
And I hate it

Can you hear me yelling now
Can you hear me from this hole

No one in my family wants to talk about my mental illness 

It's not fair and It's not right 

I matter

I know that now 

 I have to fight for myself because no one else is fighting for me and no one is fighting with me, and this is the biggest fight of my entire life. This hole is deep, dark, and scary

I was forgotten because no one in my family talks about mental illness 

I would've checked on me
I would've called me
I would've fought for me 
I would've helped me
I would've loved me 

I would have left a ladder to help myself out of the dark abyss of my tortured mind, had I known how sick I was, had someone, anyone just told me - because you knew, after all you watched me fall into the hole and you ran the other way

I know how sick I am now 

I still don't have a ladder out of this hole, but slowly, I'm clawing my way out of the dark and I don't want your ladder because I know now that it's broken 

Sunday, March 26, 2017

Julia from Sesame Street is my child

There are many sayings and phrases that float around the autism community

"If you've met one person with autism - you've met one person with autism"

"No one person on the Spectrum is the same, just as no 2 snowflakes are the same."

Unique, Special, Different 

 these words have been used to explain my child many times. I'm alright with that. After all, those are some amazing adjectives to describe a person and my child is pretty amazing. 

Most of us can relate to or see ourselves and our "quirks" as characters on film or television. We can relate to these characters and we can empathize, laugh, find humor, joy, and maybe even sadness with these characters that remind us how similar we really are. 

With an autistic person, I can see that as being challenging. The Spectrum is so wide and vastly unique, just as is the person on the Spectrum itself. 

Unique, Special, Different

For example a person on the Spectrum, can be high functioning, low functioning, verbal, nonverbal, the "quirks" and "stims" vary as well

My daughter Zoey is 4 years old, she's nonverbal, and is on the severe end of the Spectrum - low functioning - requiring substantial support. 

I've never met anyone quite like her, she's beautiful, strong willed, funny, smart, she has a smile that lights up not just a room - her smile lights up the world. 

When Zoey was diagnosed just before her 2nd birthday we were told that she was severe and that there was no guarantee that she would ever speak. 

That didn't stop us or her from trying to communicate - we found our own way, a different way. 

I had found that music calmed Zoey during the tidal waves of frustration that come along with severe autism. 

Music became her therapy and her way of communication, she communicates via song lyrics and songs, and instead of talking or me hearing "her first word" 

Zoey sang

Twinkle Twinkle Little Star was my daughter's first word

So when I had friends messaging me saying that a character reminded them of my child, or that when they saw this character they immediately thought of my Zoey - well, I had to see for myself. 

I had to meet this Julia, the 4 year old autistic Sesame Street character, with orange hair and different speech and unique quirks and who seems to really like Elmo, just as Zoey seems to really like Elmo. 

She did remind me of Zoey

 I watched a video of Julia singing Twinkle Twinkle Little Star and I was overcome with emotion...that was not Julia...that was Zoey! 

I left the room to grab a tissue to dry my face from the happy tears of finally seeing a character who was so much like my child. 

I came back into the room where I saw Zoey sitting on the couch watching the video of Julia singing Twinkle Twinkle Little Star with her friend Elmo. I watched as she replayed this video over and over 

My child met someone just like her

Thank you Sesame Street
Thank you PBS

That is Inclusion
That is Awareness
That is Autism 
That is Julia
She is Zoey 

Thursday, March 9, 2017

I won't let go

I don't know how to explain what happened in words because Zoey and I do not use words to communicate and it's frustrating for both of us. She wants to tell me her needs and wants, and I want and need to hear them.

Zoey was not herself at all yesterday

She had in home ABA and even her therapist was shocked by Zoey's behavior

Behavior is communication and Zoey's behavior was erratic and she was having a hard time coping, as was I in watching her struggle.

It's hard for a nonverbal child to find a way to communicate that she's mad and she was mad, that was clearly obvious. This heightened level of anxiety was erupting into something catastrophic, her world was rocked and she was unsteady and I knew why, I just needed to think about it, but it's hard to think straight when you're in crisis or panic mode and we were in both.

When it finally clicked, I felt stupid and validated at the same time - well because I've known this for almost 3 years now. Her old iPhone that holds her musical playlist, the songs on this playlist are her way of communicating. Zoey lives life lyrically. Her life is a song and she is the lead singer. Each song on that playlist holds her words that she can play over and over, but these words are sung by others.

My child communicates via tablet by song lyrics and scripting of YouTube kids cartoons and catchy songs. 

I have sung to this child since the day she was born, and when she couldn't speak to me, I used music to speak to her so that when times were tough we could sit in the dark together and I could show her that she wasn't alone and that I wasn't going anywhere and that I would never let go. Through the music, Zoey and I found our way, she let me in to her world and it is a beautiful musical that's full of colors and love, its's gorgeous. It's getting to see a sunset, sunrise, and a full moon all in one moment of pure extravagant light

She lets me see that
She trusts me
She loves me

And Oh God, how I love and adore this child. She has changed my life, saved my life, and shown me the meaning of true unconditional love. I thank God for the gift that is her, everyday.

Zoey's iPhone was submerged in water and destroyed the other day. For 1 day my child lost her only way of communicating to me. Her voice, her words drowned in the water that took that device from her and her world crashed, chaos erupted, and she showed me by her actions and her disruptive behavior. She's had that device for almost 3 years, and now it was gone.

We were on a clean canvas with no paint and she wasn't ready to start a new painting at all, because she didn't want to paint, paint isn't her thing, music is, and the music was gone.

I had never seen her like this before, but I was wrong, I had seen her like this before. When Zoey was 2 years old and it was not long after her official diagnosis of severe nonverbal autism. She was in her room and I heard banging and her screaming. I ran in to sit by her and she inched away from me so fast, I didn't have time to even feel hurt by her not wanting me, I just wanted to help her. My child was in pain and I didn't know where or why, but she was in pain.

I didn't know what to do
I had my iPhone and I started playing music from my playlist
She stopped banging and screaming
She inched closer to me
She listened to the song
She put her tiny little finger in my hand and we sat there and listened to that song over and over in the dark on the floor of her room and we didn't let go

So yes, I had seen her like this before and so I grabbed my iPhone and I played that same song from over 2 years ago that we had listened to in the darkness of her room, and I held out my hand and she reached out and took my hand into hers.

She was calm
We had found our way out of the darkness and back into the light
She was alright
Her drowned words had resurfaced to the top and she was no longer sinking, she was floating and happy and we sat there smiling and we didn't let go

Today as I drove her to school she played her music, and usually it's many songs all sporadically played throughout the 21 minute ride to school. Today, she played a song that I haven't heard in awhile. It took me a few minutes, but when she kept stopping it and rewinding the lyrics to repeat the same lyrics of the song, I knew that this was her talking to me. I stopped and I listened to what her song had to say, her words to me, lyrically....

"You think you're lost
but your not lost on your own
you're not alone

It hurts my heart
to see you cry
I know it's dark
this part of life

and we're too small (she kept rewinding this particular part)

I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go" - Rascal Flatts

When we arrived at her school, her aide was waiting to meet us and she watched us as we were singing the song together and after the song I said "I love you, I will fight your fight, we will do this together." and then I watched as she let me go and walked into school with her aide.

Wednesday, February 22, 2017

She's just a little Human

 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.

Thursday, January 5, 2017

Dear Senator Hassan and Governor Sununu, New Hampshire needs your vote

I am writing to you as a lifelong resident of our beautiful and great state of New Hampshire. I am also writing to you as a parent to a beautifully gifted child, actually I'm a mother of two children, two beautifully gifted little girls.

How do I sum up and explain what it's been like in our House these past 2 years?

Some people have asked questions, some don't know what to say, and some are still in denial. It all started when my youngest daughter, Zoey was around 12 months old. 

Zoey who was so full of life and was just the most happiest baby you had ever seen, had just suddenly changed right before our eyes. She would bang and rock her head for her own comfort, she would run into another room to remove herself from being around us, retreating into her own space. She stopped making eye contact, she stopped letting us hold her and pick her up, there were no more hugs and kisses from my child, who for the first year of her life couldn't go a day without a hug or a kiss from her mama. She stopped eating and allowing me to feed her. She also stopped answering to her name, even when we yelled it as loud as possible, sometimes with the 3 of us yelling "ZOEY!" all at the same time. 

It was as if she went away and she wasn't coming back, no matter how much I prayed, and pray I did, every day and night. I wanted my baby back and I cried and begged God to bring her back to me. 

Zoey isn't my first child, she has a sister 16 months older than her. Yes, I have a 5 year old and a 4 year old...two toddlers. I know, I know! 

I also went to school for Early Childhood Education and I have been around children my entire life. I knew that Zoey was no longer hitting and reaching milestones and that her speech was delayed, and I also knew that I was scared.

You see, my brain knew what my heart couldn't bare, there was something different with my child, and I needed answers and I needed to help her. 

At her 18 month check up, I mentioned the changes that had taken place with Zoey to her Pediatrician. And I watched as Zoey's Doctor evaluated her and called out my child's name, not once but multiple times in different tones, and my child didn't move, look her way, or flinch at all. 

 What followed next were 2 emergency hearing tests with an ENT and Audiologist, and the results were that her hearing was fine both times. 

It was at that point that I was told..."You should have a Speech Evaluation done." 

Okay! And I sprang into action. 

The Early Intervention team from Community Bridges came to our home, a physical therapist and an early education specialist. I sat down on the floor with these 2 women and Zoey, while my husband occupied our eldest daughter. 

 I was asked many questions and I sat there as they tried to involve Zoey in play and imitation, and watched as they tried to get her to make eye contact and engage and play with them and she did not. 

After the 3 hour evaluation was done, I sat there impatiently waiting for what they had to say to me about my baby! They talked about fine motor and gross motor, but that was not what I was sitting on the edge of my seat about...yes I knew she was delayed a bit in both fine motor and gross motor, more so her fine motor skills, but I wanted to know why my 19 month old daughter who at one point was saying "mama" and "dada" and "bye bye" was no longer saying ANYTHING at all, where did her voice go? 

 I waited and watched as this professional sat on my floor and looked at her paper reading what she had evaluated from being with my child and then she looked up at me and she started to speak and she said...

"she is a beautiful happy little girl" 

Then I heard a lot of things that I tuned out, because I could feel it and hear my heart literally pounding out of my chest and I could feel the achy punch down deep inside my gut, and I could see it written all over this woman's face.

"She has the communication skills of a 6 to 8 month old, but she is still your beautiful happy little girl." 

She said to me softly as if she were giving me devastating news, and in fact she was. 

I was sitting at the edge of my couch looking down at this beautiful baby girl and I could feel my heart quickly drop from my chest to my feet as I cried. Not just teary eyed cries you get when you watch a sad movie, but really big tears that I could feel dropping from my eyes like rain. These massive tears from my face covered my shirt in a pool of my own sobbing water. 

I looked at the woman as I cried and I said..."I'm so sorry! I know that must have been really hard to tell me, I'm sorry, so sorry."

 I got up and walked to get a tissue for my face and I heard the woman, who was visibly and emotionally upset whisper to her colleague..."that was really hard" and she was told "yes, but you did great." 

You see no one wants to give or get news like that!

After they left I got on the phone calling number after number trying to get an appointment for the diagnosis that these two professionals strongly urged me to get, immediately, as soon as possible, because Early Intervention is extremely vital when caught and diagnosed early. 

My child was not quite 2 years old and time was not on our side. In our state Early Intervention ends at three years old. Some states it's five years old, our state it's three years old and most children are not diagnosed until 5 or 7 years of age. 

My daughter’s pediatrician put in a “RUSH/STAT/ASAP” request on my daughter being seen… because early intervention (EI) is key, and my toddler was almost 2 years old. Timing was everything.
I finally got a call from a children’s hospital and was told, “We’re ready to schedule Zoey for her appointment with the neurologist.” I remember feeling elation, joy, excitement and thank God.
That all quickly vanished when I heard, “We’re booking appointments a year out.” 
I immediately burst into hysterics. I explained to her that "We don’t have a year, we need EI now and we can’t wait! She’ll be 3 and we won’t get the help that she needs soon enough."
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 I begged for compassion and help for my baby. 

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.”  as I hung up the phone. 
 There is 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 was going to be my child's voice. 
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 and it was confirmed that Zoey does have level 3 autism, which is severe autism, which requires the most substantial support, she is also diagnosed with severe Sensory Processing Disorder, Global Developmental Delay, and severe ADHD with Dyspraxia of Speech with "no guarantee that she will ever speak."
My heart hurts for all of the children that are waiting and being left behind, not receiving vitally needed services. My heart breaks for the parents and caregivers that have to fight for services, quit or lose their jobs to be their child's full time caregiver, and I die inside when I see yet another missing autistic child or adult found in a body of water because safety and home modifications are denied to keep our children safe from bolting, wandering, an elopement. This is autism! 
Zoey was one of the lucky ones. Zoey was able to get Early Intervention Services for over a year, instead of waiting a year. Had she waited a year, we would not be where we are with her today. We had intensive in home therapies and she has worked so hard, but she still has so much more to go. Zoey requires 1:1 supervision 24 hours a day and she is a high risk for accidental drowning due to her disability. The leading cause of death in autistics from age 2-14 is accidental drowning. We autism families live in fear and are on high alert. So the need for Respite services is also something that needs to be worked on in our state. We parents and caregivers need your help to help our children. More awareness, acceptance, and funding is needed for the autism community and it starts with Early Intervention. We need to work harder for our children with autism, as they will become adults with autism. 
The need for Early Intervention is vital, our children should not have to wait and miss out on needed services, I hear from Moms throughout the country that they have missed out on services or that their state is eliminating or reducing services. Autism is on the rise, 1 in 45 children are diagnosed with Autism. Every 20 minutes a child is diagnosed with autism, yet there are still so many that are undiagnosed and that are waiting or are on "wait lists."
Without these vitally needed Early Intervention Services that Medicaid helps our children receive, we are looking at these children growing up and becoming adults with autism. Autism is a lifelong neurological disorder. If we do not act now while they are young, these adults will have missed out on crucial therapies that could have helped them live a more independent lifestyle.
Without Early Intervention, we are looking at our state paying more money in the long run. Without Early Intervention Servives we are looking at institutions full of autistics that could have and should have been given the opportunity and the right to live independently. 
The need for Early Intervention is now and we shouldn't have to fight for it! Our children are struggling, we parents, caregivers, and advocates are fighting and struggling and we are tired! We shouldn't have to fight this hard for services that the disabled desperately need
This is not a Republican issue, This is not a Democratic issue, This is a Human Rights issue. 
Senator...Governor...will you stand with us and fight for what's right for all individuals, including the neuro diverse as well as disabled individuals, will you stand up for autism? Will you stand up to save Medicaid to help children like mine? Can we count on you and your votes, please? 
I am writing to you not just as a mom that wants what's best for her child, but for other children and adults like hers. 
Thank you so much for your time and I hope this letter finds you both well 
My Sincerest Thanks, 
Melissa Cote