Category Archives: Autism

I’m here for you. For as long as you need me.

I was going to go into detail, tell you of my story but right now I can’t. I can’t because you don’t need to hear my story right now, you need to hear that I will understand yours. If I can’t understand you, I will listen and empathize. I will give you my hand, lend you my shoulder and certainly be a sounding board. I chose these pictures for you because in them I saw my past, I saw my friends, I saw my struggles and I saw the messages I needed so long ago. The reason I became who I am today, I wanted to be the person that I never found so long ago. So these are for you and me.

I am here for you. For as long as you need me.

Sparkles,

Shaye

Xoxo

 

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It Takes a Village

They say that it takes a village to raise children, but what about when you don’t have a village. What about when it’s only you? What about when you think you have done something right and then you realize that you may have made a mistake, screwed it all up and it not only breaks your heart but it breaks the hearts of your children too.

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My kiddos were too young to know when their father and I split up. They never grew up with them until my oldest was four and my youngest two. Even then he wasn’t a constant in their lives. My Wolf was the constant from the ages of 3 and 1 to just about 7 and 5. They knew him, they trusted him but I was comfortable and I knew that the relationship wasn’t going to come to any sort of fruition. Then there was the Demon, for lack of a better name for him. I was sure, totally sure about him, he helped take care of me when I was a sick 17-year-old for fucks sake, but his alcoholic and cocaine fueled rages at me when the kids took to bed proved too harsh on me and I had to let him. The next day Charming rode into my life, and he was home. He was everything I knew about home. He was the first man I ever truly gave my whole self to. That self-was whole in the least, it was broken fragments and I wasn’t ready to be the woman he needed me to be. I lied…A lot. To protect me from hm and to protect him from me. Because I was scared. He took to my family quite quickly and made promises of forever, but forever wasn’t as long as it turned out to be. A year and a month later and it’s over and he’s gone.

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I wrote this to a friend today and I think it is quite pertinent to my situation –

The hardest part about being a single mom is the fact that unless somebody’s ready to be in a relationship with you and your children there can never be a clean break. It sucks to think that every person that I’ve had in mind and the kids live excluding friends has been able to walk away with the peace of mind and the children’s hearts and they don’t realize what can be causing it. It sucks to think that somebody can put that much damage and that much heartbreak on my kids lives. I love all of my friends for sticking around and all of my friends for taking all of the roles they have in the kids lives because we’ve basically spent nine years alone. But I think I just want to find someone eventually one day that’ll be able to keep the promises they made for the kids and not leave them as broken as they’ve tried to leave me. Is that ridiculous or does that sound like something I can be Wishing on a Star for because honestly I don’t know at this point?

It’s the truth….It takes a village, even if that village is spread over the internet community.

Shaye

xoxo

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It’s days like these…(I hate)

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…that I hate that you refused to fight anymore. That I hate that you walled off your heart and moved on. That you can tell someone else you love them and hide behind that and no be my friend. I hate that you promised me forever. I hate you promised the kids forever. It’s days like these that I hate that I gave into what I knew I wasn’t ready for. I hate that I loved you so much I could say no. I hate that I can’t unloved you. I hate that you are our sons person but I’m the one in the waiting room holding back tears because you can’t be here with me. It’s days like these that I hate that you held it all in and then threw it all in my face. I hate that I lied because I was scared to tell the truth. I hate that the truth burned me so nadly. It’s days like these I hate that you left them, not me them. I hate that his dark thoughts got worse, you are 10 minutes away but I have to rock him to sleep. Alone. You left me alone. You took the easy way out. And you can’t talk to me. I’ve healed so much and you are the scar that won’t close be a use I loved you so hard I can’t hate you. AND It’s Days Like THIS THAT I Hate that. A single mom strong and true thanks to you.

But life sucks without you because as much as you say you are, you aren’t really there.

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The Answer You Didn’t Want

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You sat there in the chair shifting. The cushion was not comfortable but it wasn’t the worst you’d ever deal with. You waited as the papers shuffled on the desk and he turned to face you. Quietly the little boy with the big brown eyes was playing with the blocks. The noises made the silence worse. Shuffle shuffle, click click, unidentified sounds from that beautiful boy. Finally he turned, you dug your fingers into your legs to keep from shaking. You already knew the answer but you needed to hear it from someone who could tell you that you weren’t crazy. He had a PhD, he knew crazy.  Autism, Aspergers to be exact. Along with Sensory Processing Disorder and anxiety. You lips pressed together so you don’t cry. You knew what they were going to say, but hearing it was a slap in the face. But 4 years later you’re still ok.

Tap, tap, tap….fancy pen on a fancy leather shoe. Your under a microscope. He won’t tell you what’s wrong. Claims he doesn’t know. But you already heard the answer, because you’ve been living with it for years. But you needed to hear him say it. Say that you were bipolar and borderline. And he refused. So you broke his mug. And when you were finally ready to hear the answer, it was still a stinging mark across your face, because it wasn’t supposed to be right. 3 years later, you’re still alive.

Over and over this happens. It feels good and bad at the same time. Vindicated but what the fuck are you supposed to do now?

Now…When you need answers. When the bloods come back highly abnormal, you get nervous. And it’s not nervous that they will find something but more nervous that they wont. You are tired, swollen and drained. So they had scheduled another test. And you pray something pops up. Because in all your years …Nothing has. It’s hard to fight an invisible disease when you can’t find it. Sick and tired of being sick and tired. So you hope they find something. So that you won’t  have to suffer without reasons…

But you realize in this moment that this may be the one answer that you don’t want to have already answered.

Food for thought
Shaye xoxo

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Children and Autism

I am not going to sit here on a platform and talk about Autism. I am not going to give you my story, not right now at least. I am merely here to show you a picture. A picture of love, a picture of understanding, a picture that means more to me and more to advocation that any I have ever seen.

Three years ago I posted this picture with this caption.

Most grownups don’t understand Aspergers. My three-year-old daughter does…
Jayson said “Kay I’m not feeling good, I forgot my blanket I need pressure”, this is what she did. No questions. No fighting. They are watching tv…I love my kids

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Three years later, she is still the only one that totally understands him. They may argue, antagonize and all those things that siblings do. But when he needs something he can’t communicate, she is there, and taking care of him.

Maybe Dumbledore Isn’t Always Right – Rebecca Ethington

One of my favorite authors and closest friends posted this on Facebook a few days ago. I found it so profound, and you don’t usually find stuff like that on FB anymore. It summed up so many things, what ifs and lonliness, bullying, and just not knowing when to reach out and help someone or when to ask for help for yourself.

Never be afraid to reach out and help those in need, never be quick to judge because you never know what that woman behind that mask or the man behind the curtain are really like. Sometimes it isn’t east to click your heels together three times, sometimes their is no faerie godmothers. But there is always you, and that is good enough for me.

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“There is a scene in the final Harry Potter where Harry and Dumbledore meet at a place between life and death, and in that space they see a piece of Voldemort’s soul – this quivering, whimpering, ugly child, shoved underneath a bench.
And Harry, tries to go to it, convinced it needs help. And Dumbledore tells him not too.
I’ve always hated Dumbledore for that. Yes, Voldemort is evil, did he probably deserve what’s coming to him – yes. And I am in no way comparing myself to that quivering whimpering child, hidden away in pain.
But we have all been there.
We have all been so full of loss and heartbreak, and agonizing defeat, and sadness, and rejection. That we have all been there.
We have been that forgotten child in the corner, a deep part of us just shaking and crying and desperately hoping that someone would just come over and pull us out of the dark and hold us while we cry and comfort us until it all goes away.
I know I have.
And chances are, when you are there, you don’t know how to ask, or maybe you don’t have anyone to turn to anymore. You are alone, and you can hear people talking on a bench and your crying out for help, but they don’t come to find you.
So take this with a grain of salt. But you know those “whiny” posts everyone complains about on Facebook? Yes, some of them are just negative people. But what if some of them… just maybe… where people so lost and alone and scared and so desperate for help that they are asking for help the only way they know how. That maybe they just need that hug, or that phone call with a real voice.
I can’t believe I’m going to say this… but maybe sometimes we shouldn’t listen to Dumbledore. Because maybe sometimes they need our help, our compassion, our empathy and our love. Don’t be afraid to reach out – because people are people – but they are also human. And in this crazy world, we can’t do it all on our own.” – Rebecca Ethington

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We Have Apples

So there is this wonderful mental illness blog that I follow by Rachel Griffin called We Have Apples. A little bit ago she had put up a post asking for pictures, both uplifting and at our times of trouble to put in a music video for a project she is doing. Let me give it to yo in her own words (it pasting it from her site)

“As a lot of you know, I’m a singer/songwriter in New York City with a fabulous life…. and a mental illness! (the two can go together! And errr.. it wasn’t always that way! LOL) I am so passionate about mental health awareness, ending the stigma, and connecting with other warriors like you! I am also writing a musical about these topics.More about the mental health musical I’m writing, We Have Apples, can be found on the website. You can also hear songs there. (But the song for this video is not released, yet- You’ll be the first to hear it, though!) If you want, you can sign up for the show’s mailing list to be kept posted on the development!:)

I was just selected as a Dramatists Guild Fellow, which means this year I will be working on developing We Have Apples with Broadway professionals!

More about my career as a singer/songwriter at: Rachel Griffin Website. This info I’m giving is not because I want to brag, but I want to tell you a little about my career so you know this song and video we are going to make will be high quality and could do very well! 🙂 I’ve won two National songwriting contests, recently wrote a song for an internal Macy’s campaign, and I have a publishing deal for a few of my pop songs.”

Well I participated in this as mental health is a very important subject to me….Obviously. I am keeping my fingers crossed that I will get to work it Rachel in the future. But here it is…..My debut in a music video….Pass and share it is so important!!!!

Superhuman Spoonie Squad

Recently I made a group on Face book called *see title of post* I was tired of joining groups with over 1000 plus members and trying to find my niche.

Superhuman Spoonie Squad

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This was my callout for my members

I have started a group for all of my spoonies. Because sometimes it’s nice to have a place to go, when you can’t have a friend to hold your hand, and there isn’t over 2 billion strangers to try and converse.

So raise your hand if you need a voice, a hand or just to lurk and hear what spoonies like you have to say.

Safe space. Is what I intend. Rant, vent, laugh, cry…..

Comment, pm, tx, email….get in touch

Superhuman Spoonie Squad

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********************
This was what I had to say about me.

So let’s see….
Graves disease
Immunothrombocyticpurpua
IgA Deficiency
Chronic fatigue syndrome
Fibromyalgia
Uticaria focal caused by who the fuck knows anymore
Bipolar II
Borderline personality disorder w/narcissistic tendencies
Anxiety disorder
Binge Eating Disorder
PTSD from all forms of abuse, violence and my miscarriages
Oh and I randomly black out for reasons they still don’t know

At least I don’t have cancer?

Well yall know me. I’m a sassy, snarky survivor that tries (sometimes too hard) and pushes myself (definitely to hard). So as I get my computer fixed I can continue writing the books that I have started. I am going back to school in the fall to get my bachelor in therapy for teens with mental and personality problems.
My dream is to open a coffeeshop, with mismatch in cushions that is a safe space. A Place Where IF YOU NEED help YOU HAVE someone to talk to. It’ll have books and board games and at ni h t there will be optional group meetings. THE Walls Wil BE DECORATED By PHOTOGRAPHS AND Art From Local artists. My photography studio will be in the back.

They are still fucking with my meds so if I say non sensible things In here I’m sorry. My fibro flares seem to be worse because of the rest of my diseases.

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I know some of my readers and fellow bloggers use this world as a safe space to vent. I want you to know that there are other places as well. I have my degree in therapy as does a few in my group, but that is not what the group is for.

This is what my group is all about.
Friendship, handholding, venting,laughing, crying and being the incredible human beings we are….even if we don’t see it some times.

If you want to you are invited to join us, to lurk, to talk, to listen and to make or 5.

Superhuman Spoonie Squad

I belive in you.

Sparkly love

Shaye

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Diagnosis

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You’ve been here before
You know what’s to come
You know the symptoms
The causes
The signs

You’ve spent months doing research
You’ve  talk to the doctors
You’ve talked to the therapists
Hours on Google
Sites they tell you not to read

The time has come
You sit in the waiting room
Those chairs eat to make you feel at home
But you feel it
The anxiety creeping up
You already know what’s to come
Why are you panicking

The needles go into your arm easily
That one good blood drawing vein
You managed not to pee all over your hands
When they give you a much to small cup
They check your vitals
Blood pressure cuffs that bruise
O2 monitors shows you’re perfect
But you’re not

This pain has been building for a long time now
The rashes
The blackouts
The sleepless nights
The snarky comments
The feelings of everything snowballing
The highs
The lows

Sony appointments
So many tests
Ekgs
Eegs
Mr is cats scans
Stress tests
Sleep studies
Trial pills

They call you into their office
You are 9
Your mom is there
You have Graves disease
We had to take out your thyroid
But at least it’s not cancer

You are confused, there are tears
But it’s ok, because Mom is ok
They do a Home Improvement episode
Randy has the same thing
You kind of understand
Then surgery

The weight starts to put on
You are a nervous teen
Uncomfortable in her own body
In her own mind
Not popular, but you best friend is
Popular by association
You are tired of being around all the bad stuff
You just want to sleep

You fill a bottle of pills
100 Benadryl 100 Tylenol
You sit next to your group at breakfast
In the crowded lunchroom
Make conversation
Take each pill one by one
No one notices
You wait for the bell
You are scared
You are 13

You take hold of your best friend’s best friends arm
You tell her to take you to the guidance counselor
You may die
Counselor calls your mom and 911
Mom yell at you profusely
Ambulance arrives
You are unconscious

Next thing you know is mom doting on you
Doctors asking for a psych evaluation
Mother denying it
They ask me about pictures
They never ask me why
The release me home

Everytime mom got upset
She’d throw a bottle if pills at me
Asked me if I wanted them
High school was chaos
I just wanted to fit in

Never didn’t have a boy friend
Did things for money
Experimented with girls
Then I got real sick
Mono, flu, ruptured appendix,flu,mono

The night my Father caught me smoking
Was the night get met me before class
At night school
Shiny white construction truck
Something was wrong

Get in
They think you have cancer
My heart stooped
Routine blood draw the day before
Came up with possible cancer
Had to go to the hospital now
Mom was hysterical
And waiting

We didn’t talk
I smoked his cigarettes
He didn’t say a word
Blood tests
Had to come back in the morning for a bone marrow
Might be luekimia

Didn’t sleep
Bone marrow test sucked
Hematology/Oncology Peds ward sucked
I was pulled out of my senior year
Soent days there
Without Luekimia
With Immunothrombocyticpurpua

I was allergic to the treatments
They had to give me longer ones
With other thing
To keep me from dying
But at least it wasn’t cancer
I missed senior year
I was 17

They told me I’d never have babies
They told me lots of things
Because I would always have chronic illnesses
But I met Drew Barrymore
I week later I met Trip
Two weeks after that I was pregnant

High risk
Moved to VA to be near him
Shotgun wedding
Known each other 3 months
Everyone wanted the baby gone but me
He was my baby.
Couldn’t drive
Couldn’t do much of anything
Felt insane

Hospital time
I’m allergic to latex (I didn’t know)
My son is perfect
Trips been sleeping around
6 weeks later I start to bruise
Hematology said if I  dont come now
I could die.
If it weren’t for my new born I would have gone.

The abuse started then, emotional, mental
We got physical a few times
He lost his job, I got one
We got pregnant
I lost Hope
It was devestating
We called our marriage quits

Then the barrage of insults
I had gotten too fat, lazy, bad wife
Meanwhile he was sleeping with
My best friend
One last hurrah on my 25th birthday
Pixie was implanted

He saw her sonogram 3 months later and left me at the doctors office
Took little man with him
It was our 2 year anniversary

That pregnancy was hard
Living in a small room 
In mom’s house
Slept in a twin bed with my son
Fetal cardiologist everyweek
2 vessel cord
No husband
Drove 45 each way to work
In another state
Started having blackouts

Into the world she came
Out of mom’s we went
Well first came meds because I had such bad post part depression
I could let any one touch her

Then my little man got diagnosed
With sensory peception disorder
I knew something was wrong
But give it a name and it’s real
And scary

Fast forward
Hand shaking
my four year old
still doesn’t articulate much
I know the answer but I’m scared someone else may say it
Then it’s real
Autism
Aspergers
Anxiety disorder

Slap
Slap
Slap

I knew I knew all along but
To hear it describe
To know my angel baby is going to have
Some form if difficulties
That’s hard

Ot. Pt, TSS, BSC, Speech therapy
And I work
Because Kie is jobless
And well bills need paying
Pixie needs day care

The the break happens, my break
Thrown against a wall
Accusations flying
Abuse thrown at me
I hoped she choke me out of kill me
It hurt so much

I broke
Doc sent me to out patient
A mental hospital
WITH Crazy People
But it was that or being 302’d
They didn’t diagnose at first

They watched
interviewed
Tapped their FUCKING PENS
Used NOS as an excuse
Loaded me with so many meds
I couldn’t remember my name

I knew what was wrong
But I wasn’t prepared
Bipolar II ok gotcha on that
Anxiety disorder ok feeling ya
Borderline personality disorder
WITH NARCISSISTIC TENDENCIES
Scuse me? What the WHAT?

SLAP
SLAP
SLAP

Speechless
More meds please
At least it wasn’t cancer?

I read books
Tried to understand
And IT made sense
I could live with it
But refused to take all the meds
That was a struggle

But a blackout
Leading to a major car accident
Made them agree with me.

Fast forward…
Diagnosis – Binge Eating disorder
Diagnosis – CFS
Diagnosis – IgA Deficiency
Diagnosis – hives due to allergy from progesterone
Diagnosis – fetal heart stopped beating, need to induce labor and force miscarriage
Diagnosis – Fibromyalgia

No matter how mich you know, to have a doctor tell you anything, it hurts, a lot. And I know I’ll get through it. But I’m scared. Scared of more things wrong. Everything hurts. Pain in touch, to sunlight, no sleep,  no real awake. Of this is a dream I want to wake up. Because it’s a nightmare.

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What am I fighting for?

Well whilst I can’t answer this directly on here just yet as it was a question posted for gishwhes.  I will say, things have not been peachy and there are days I feel like I am fighting for my life.