These are My Shoes

I’ve been told many times this weekend since I started a petition seeking prosecution of Issy Stapleton’s murder as a hate crime that I don’t know what its like to walk in their families shoes.  So I will shoe you my “shoes” so to say.  This is my story, not meant to take away from Issy’s but to address those that don’t seem to understand that I know what its like to have Autism.  I know what its like to struggle to recieve services.When I started this petition I was in an inpatient psychiatric facility, in fact I was just discharged hours ago.  When Lourin Sprenger came to interview me for the news, I was in inpatient facing struggles of my own.  In fact Lourin had no photographer and had to walk a half mile down the sidewalk from the nearerst public parking lot with a huge camera, a tripod and a microphone.  You see the staff agreed to me having this interview outside, because they thought that someone like me could not get interviewed by the news.  When they found it was true they panicked.  They were adamant that I not get interviewed, which is illegal to restrict my vistors.  They told me they would call the police if she came on the property and that if I left the property I would be discharged.  This was all after the staff told me they were okay with it.  I ended up having to meet Lourin on the sidewalk, a public right away that happened to be on there property.  Pine Rest was none to happy with me, but that was not the start of their unhappiness.

I had anxiety through the roof, and was very overwhelmed to the point of thinking about ending it.  While I was there I noticed a staff not doing rounds for over an hour and made a video of it using my laptop.  Because of this I was discharged in the middle of my treatment by managment even though the programs nurse, many of the staff, and others agreed I should stay.  The system could not do nothing to stop this manager for retaliating against me as it takes them time to investigate.  The Michigan Recipients Rights system (the system that enforces the right of those recieving public services) is broken.  Adult protective services refered it to a licensing agency who would take time to investigate before taking action.  In the mean time I was discharged, when nurses, social workers and care staff thought I needed services because I filed a complaint.  Even though you don’t need proof below is my discharge paperwork to prove I was there.

admisson paperwork
discharge paperwork showing my admission date of last thursday and discharge today

I was discharged despite the system thinking I needed to stay there.  I was discharged because some manager was upset I caught one of this staff committing neglect and reported it.  The system is reactionary when it comes to violations and it will take 90 days for them to investigate and request corrective action.  The news had nothing to do with my forced discharge, they were already trying to do it when this happened.

I fought yesterday hard for my rights, my case manager did as well as he disagreed with my discharge.  It had me really wound up and I have not slept since 9am yesterday… its not 4:18pm today when I last edit this.  I’m still wound up and angered by the systems retaliation, and still dealing with the orriginal anxiety and depression that brought me in.  Anxiety and depression I have had for months but now can deal with finally due to other circumstances.

Struggling with a Broken System

I know what its like to struggle with a broken underfunded system that does not see us as individuals but as a cost that has to be kept down.  I know what its like to have to file complaints and appeal to get services.  I know what its like for the system to retaliate for standing up for yourself.  I hold in my hand a pile of substantiated recipient complaints I’ve filed in the past two years.  However almost weekly I see other recipients of services or myself’s rights routinley broken, or services denied based on medical need when it really comes to how much money is in the budget.

The fact of the matter is most of those in the mental health system care, you have to in order to work in it.  My “case manager” who coordinates my care is by policy to have 30 clients.  His case load is currently in the 40s and often if I’m on the bus going by his office I see his car parked there on Saturdays.  He tells me its the only time he can get paperwork done.  Its often hard to get a response from a case manager in an emergent matter because they are so overloaded.

Below is a picture of my handful of recipient rights, licensing, adult protective services and other complaints which I’ve filed.  These are just the complaints that have been substantiated.

this is my pile of recipeint rights complaints, fighting the system to get the services I need
this is my pile of recipeint rights complaints, fighting the system to get the services I need.

The system does not like self advocates. It often labels us as ‘non-cooperative’.  During the time my daughter was born I needed some extra outpatient care such as therapy.  However Community Mental Health which provides these services fought and said I needed an adult foster care.  They sent me out to the middle of nowhere, nowhere near family or friends.  I came to town for a doctors appointment and refused to go back.  I wanted to go back to my apartment and knew I could handle it with extra out patient care.  They instead stuck me in a state hospital, you know the old school hospitals, and told me they would discharge me when I agreed to go back.  I refused knowing that insurance would not cover it and it came out of CMH’s general budget.  They budged after 7 days and moved me to a placer close to Kalamazoo for outpatient care.

The Violent Outbursts

I don’t have violent outburts where I hit or physically attack people.  My overwhelming outburts come in yelling at people near me.  I have ‘fired’ my case manager more times then Donald Trump has fired people on reality TV shows.  I yell when I get overwhelemed.  I get overwhelemed by reperitive nosies (such as a clock, dripping water) textures (I don’t own a pair of jeans), smells, even sometimes emotions or decisions.

I do however know what its like to live with someone that does have violent physical outbursts.  My ex girlfriend had a service dog to help her cope with her issues, when she was forced by landlord to remove the dog (she thought it was too much effort to stand up and fight even though she would of won) she declined mentally and became physically agressive.  Once she was so aggressive I had to call the police, and she then swung her purse at the police.  I was forced to end the relationship – and its something that is hard for me to cope with to this day watching someone I care so much about detiorate and be able to really do nothing to help.

Perceptions in Society

my daughter
my beautiful daughter

I have a daughter that I gave up for adoption.  Shes a beautiful little girl who is so happy.  Its a very open adoption which I’m thankful for, but it was not always that way.  You see the adoption agency tried its hardest to push for a closed option due to my Autism.  They went even as far to illegally leak my name to the adoptive family to try and get them to close off contact.  Luckily that situation backfired and the adoptive family looked me up online and read about me.  They learned I’m not a violent autistic person like the media often portrays us.  We now talk frequently, but the public perception of Autism almost ruined a loving relationship that I (and my daughter) cherrish.

Someone who did not like my petition told me how ugly my daughter was.  That was just pretty shallow… but thats for later.

Family and School Don’t Know How To Help

My dad didn’t know how to help me, so he thought guardianship would be a great idea.  It wasn’t, and I knew it.  So I ran away, was homeless for over a year until I could get my feet under me.  I did it.  My dad and I now have a great relationship and I speak to him on the phone almost daily, however back then he really didn’t know how to help.  He saw me on the news and was so happy that I’m advocating for others.

But back in highschool I was bullied in school.  I often carried a large duffle bag with me with all my books and stuff because I was scared to go to the locker.  I started failing because of the bullying, and frankly the school work was not challenging me.  I was segregated in a special eduction school.  Luckily when I ran away I met two teachers who really understood me and Autism.  They challenged my brain, they helped me thrive.  I got my high school diploma while I was homeless, but these teachers helped me more than I could of imagined.  If it were not for these few teachers and a caring principal I would of fallen through the cracks.

The Difficulty Getting A Job

I don’t do well with social things, so I really suck at keeping a job.  Instead of rotting on disability my entire life I’m trying to develop my own company.  I’m trying to be self sufficent.  I’ve learned how to program and am developing web, facebook and twitter applications.  I’m getting good – but not good enough yet.

The Bullying And Hatred

I don’t hate this mother, I understand her struggles to get the care needed for her daughter.  I go through it myself. I know what its like to be looked at by everyone when I do something that is not appropriate by societies standards.  I don’t understand societies social rules.

However the attacks I recieved from others who have a legitmate passion about this case are troublesome.  The fact remains the mother is not the victim here, the daughter is.  There is never an excuse to kill your own child, ever.  If Kelli Stapleton felt overwhelemed and could no longer care for her child there are many options she could of gone through.  Those options would not of been easy (I gave up my daughter, so I know), but it would of been better than killing your own child.

I’ve had people message me telling me they would like to bring me up north to “educate me”.  I’ve been told I don’t understand Autism.  I do understand, I do empathize with the parents struggle to get services.

I however do not empathize with attempted murder of your own child, for any circumstances.  I do hope that Kelli Stapleton gets the help she needs, however I do think she should face charges for crime and that the childs Autism should not be relevant in sentencing.  Every child is equal, and no child is less worthy to live than another child.

I do want to say I’m glad to hear Issy Stapleton is making a recovery, and I continue to pray for her, and her entire family including mother daily.  However her mother needs to be held accountable for the horrible things she did.

You Don’t Know What Its Like

To parent a child with Autism…. to deal with Autism…. to struggle to get the services you need in a broken system… to be afraid of someone whos not getting the help they need that gets physically violent.  I do… I have Autism.  My last meltdown was yesterday.  I fight for my own services, I don’t have a dad or mom that does that for me.  Your children are lucky to have you.  So to the person who sent me a message telling me he wants to take me up north to educate me – walk in my shoes for a while.

I’m upset by the fact a henious murder of an autistic child is dividing the autism community.  I do hope however something good comes out of all this conversation for me, for the other autistic people, for all the families, for the people who are overtaxed that work in our system, and everyone else effected by Autism.