Death by Autism

Life threatening …..

I have had so many different times not be able to get help or to understand what to fear where danger is or was and what to do.11th birthday party in 2003

I’ve always been around “different”

Walking alone at night seemed simple no one else was around so I thought it was safer I don’t like seeing a lot of people at once so the quiet of night seemed better.

In 2015 I woke up from a coma and the doctors all said I was faking the seizures that put me in a coma in the first place. I was in a coma. I don’t know how I faked that you never know… I guess but the reason they said it was because I woke up from seizures to fast, I knew to much about seizures comas feeding tubes central lines and medical things. I was seeeking attention they said.

Well I’m autistic I can tell you about a lot of things I don’t even care to know about but I don’t forget facts if I hear it normally I’ll remember random things.

I have a very high level of brain activing going on at all times. I’ve been this way most of my life, I stare off and can answer what you said all the sudden even if I had a seizure but here is why I have high brain activing

I didn’t know I was being so different

During an eeg I had for about 3 days I was shown to be having a 5-30 second seizure every few minutes.. so truly if you think about it I came to fast from a seizures because I’m normally having a seizure so my personality is basically me seizing so my normal is not normal.

I was talking fasting and just kept talking for 40 minutes my dr saw on the eeg I was having a seizure for 40 minutes non stop I was aware but I wasn’t in control.

In June of 2017 I was put into the icu after I had had a mini stroke, I was freaking out crying to my parents not because I had a mini stroke no I was horrified that the hospital was going to let me die. Because I’ve come so close before.

It’s never been easy but it’s never been harder to have doctors nurses medical staff to act like I’m in there way. Like I don’t matter. I fear one day I’ll end up in the ER and the doctors let me die.

Right now I’m not as scared as I use to be. The doctors I have right now have saved me instead of pushing me out the door to another doctor. None of them blamed my autism like many had over and over again. No they all worked hard to figure out what to do. I notice a lot that’s part of my problem it’s what my autism does for me.

My Neuro doctor never once said let’s see if this is autism no he said ok let’s get some Medicines do test do scans it all…

They found more then they knew they would. This year 2017 I have had about 4/5 seizures. I’ve had about five EEGs. A lot of procures and things.

The doctors kept trying and they did a good job.

I have a VNS in my chest which is a device that sends pulse into my brain to help calm my seizures or stop them all together.

I have a feeding tube in my stomach that goes into my small intestines.

A picc line in my arm for Medicines fluids transfusions blood all fun things..

But you know what? None of them took away my autism and that’s ok I know for sure that I took away the doctors power of my autism. It is not what they are allowed to blame. I am autistic. But I also have epilepsy, Ehlers–Danlos syndrome, eosinophilic esophagitis, heart defect, mast cell activation syndrome, MDS a blood disorder, asthma and more…

Shayweasel is still autistic!

Open letter to the churches who support BCH

 

Dear Churches and People who support the Baptist Children’s Home of North Carolina. (BCH)

I’m angry. I’m very upset and as someone who has supported BCH I wanted you to know the truth. So here it is.

 

This business is run by, I don’t know how to put this so I’m going to put it like this, this place is like a bunch of anorexic models, they only care about what is on the outside and what looks good and they have no worry about how horribly they are hurting their bodies and the people around them. That is what the people who run BCH are like. This is who it is run by.

 

As you might not know to work for the Baptist Children’s Home of North Carolina, you do not need to be a Baptist, you don’t even need to go to church or believe in God. You don’t need to know a thing about the Lord to work here. And thats shocking. If this wasn’t mostly supported by churches then this wouldn’t be a big deal, but it is. It’s made a mission because of the people in the churches.

Your mission says its

“To provide the highest quality of Christian services to children, adults, and families in a caring culture of measurable excellence.”

But since you don’t have to be a Christian to work for you I’m not sure how you are holding out your mission. You can’t have it both ways. If The Baptist Children’s Home of North Carolina wants to take Baptist out of the name and just be a children’s home. I’d understand. But right now you have it in the name.

 

Most of the head people in charge of BCH are normally more worried about making the children dress and be pretty so they can showcase them and show them off and say look what we did? We changed them. Well truthfully this is the whole baptist children’s home, all of them are all about looking good having numbers saying we saved and we reached 5000 people this year and we are doing great. But if you dress children and women up and say look they are all good but if you don’t change someones heart you don’t do anything, so good job you reached 5000 people but you only changed the outside the inside is still hurting and the inside is still broken you might have reached them but you didn’t touch them. You didn’t heal them. Numbers say nothing. Numbers mean nothing.

 

You can get someone to look like a beautifully wonderful person on the outside but again its just like an anorexic. It’s not okay to what they are doing, if we are suppose to be the body of Christ, then this body of Christ thats at BCH is anorexic and in dying need of being feed by some Very Godly and people who are fully in wrapped in the Lord, and no money and nothing could shake them. Because the people who run this place have starved the baptist childrens home of the Lord.

People like Blackwell and Keith Henry don’t have a christ focused mindset. Really they just need new blood to come in and take over. Start at the top, and work your way down and see who the people who would lie down their lives for christ and keep those people. Because if you have people who are active in church and in their faith on a daily basis working for the kingdom of heaven. Then things might change.

You do have really good Godly minded people who work for the Baptist Children’s Home of North Carolina, but they are told things like – That if they want to cut down their hours they need to cut the bible studies and going to churches and don’t take the children to VBS. And that we aren’t paying you to do that. And thats hard on some of theses truly Godly minded people.

 

Now my own Father was fired from the Baptist Children’s Home, because he stood up and said that being alone with single women was ungodly and was putting him in a bad spot. Now they would say that he refused to do his job, but when they called him to say that he “quit” you’d never guess what he was doing. He was picking up a women from work. He was doing his job. If someone would have come forward and said that a women would be more suited for this job and roll in this part of the mission my father would have respectively stepped down but no they told him that he “quit”. This was not what my father’s job was even in the first place. They told him he “quit” and they are tarnishing his reputation.

 

So I write this because I’m upset and I’m ready for a change. And I need help changing it. I can’t do it alone. Help me stand up and change the Baptist Children’s Home of North Carolina. Because Godly minded people are out there and they need our help to stand up for whats right. We can make the Baptist Children’s Home better, but we need new blood and we need Godly minded loving people who put the Lord first, people second and money last. We need some Godly people to raise up and make a change.

Stand up, its time for a change.

 

I am Shannon DeRose.