Posts Tagged ‘Jonathan Carey’

Because I am familiar with the story of Jonathan Carey (be warned:  this is a YouTube video and a true story that will make you cry; I couldn’t even get all the way through it),  I have been attempting to investigate recorded cases of abuse and neglect at residential educational placement schools.  This has proven much more difficult than I ever would have believed.  I started by writing an e-mail to Michael and Lisa Carey, Jonathan’s parents (I had actually spoken on the phone once before to Michael Carey, but he was days away from the election in which he was running for the NYS Senate and our conversation was brief).

Shortly after receiving my e-mail, Lisa Carey called me and we spoke on the phone for a while; she is more than willing to help me in any way she can.  We listened to one another’s stories and she said she was shocked at how similar our experiences were – her son attended Wildwood School as well before being placed in a facility, and they went through similar nightmares as what happened to us in October.  Lisa was very kind.  She gave me her phone numbers and even offered to meet me sometime in person.  I now know a lot more about specific facilities in this state and the possibility and likelihood of abuse, particularly toward non-verbal children, and it scares the living hell out of me.  That being said, I know I am listening to the worst case scenario when I speak with Lisa so I am trying to stay calm and objective and research accordingly.

So I called Bob Freeman, the executive director of the Committee on Open Government, someone I know from working at a press association and meeting him at several of our conventions.  He suggested I speak with the records access officer at OPWDD to learn more about FOILing records from their office regarding recorded cases of abuse and/or neglect from specific facilities across the state during specific time periods.  He said if I did not get anywhere or needed more help that I should feel free to call him back.  This man is a wealth of information and is also extremely helpful.

So I called the records access officer at OPWDD, who basically told me my request would be for a statement of deficiency and plan of corrective actions, which would be a tremendous amount of information (including citations for such minor offenses as a bedroom not being swept regularly) and would likely not contain the records I was looking for).  She told me I was welcome to make the FOIL request, but that it could take a long time and be expensive as well; the records are not provided for free and only go back 6 years.  She was kind as well, telling me she would look into it some more on her end and that I was welcome to call and speak with her on Tuesday.  She then suggested I call the local DDSO and speak with them.

As soon as I hung up, I happened to get a phone call from the director of admissions of another facility we are considering, who had recently received Jonah’s paperwork from the school district and had some questions for me.  I answered his questions and then flat-out asked him about cases of abuse and neglect at these facilities, and whether I could request these records directly from each facility.  He told me that the facility itself would be unable to release such information to me; he cited a mental health law (I forget exactly which one now but am going to investigate) that protects privacy or some such shit.  What the living hell?  A law that protects the privacy of facilities that abuse and neglect developmentally disabled children?

Good God.  Looks like I’ve got a lot of digging to do, and a lot of educating myself about the law.

I imagine I can, in the meantime, request referrals from these facilities – names of other parents of children who are living there.  In fact I’ve been able to obtain a few with the help of Laurie, my favorite social worker at Wildwood (with the parents’ permission).  I will be speaking to as many people as I can about all of these places.

This past week, two staff members from St. Colman’s came to visit and observe Jonah at school; evidently they were able to witness him both working (I think he was doing math) and attacking (he launched himself at the teacher and bit him, from what I understand), so now they know what they would be dealing with.  We haven’t heard anything yet from them.  Maybe they ran away and never looked back.  <– sad attempt at humor.

Oh, and one of our cars is still in the shop with a blown transmission – evidently one came in but it was cracked so we have to wait some more – joy.  I am going to help with Jonah this weekend as much as I can – I will likely take him to grandma’s or on a trip through his favorite mall (which was the sole topic of my February article for the Capital District Parent Pages, where I have a monthly column).

If and when and however I come out the other side of all of this, I intend to speak with every publisher and press connection I know, every government official I can find to listen, every bit of writing skill I have, to SHOUT and SCREAM and bitch and advocate for something MUCH better for all of the developmentally disabled.

The budgets are being cut on all their programs  – the programs and services are shrinking – the pay for the hardworking caregivers is disgustingly low – the availability of help is disappearing…and just the opposite should be happening in all of these cases.  I am going to do something about all of this ridiculousness or die trying.

Watch me.

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the thing is

The Thing Is…

by Ellen Bass

…to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.

The thing is how can a body withstand this, indeed?  Can I learn to love this life?  Mary, where did you go?  Why did you impart strength one day only to sap me of it the next?  Is there a God who hears me pleading help me, help me, help me, over and over in the middle of the night like something broken?

The thing is I now don’t care how many people hear me scream and moan and cry.  I don’t care how ugly it all looks to everyone.  I’m sorry, mom.

The thing is I am sapped of energy, of hope.  I can’t do it anymore, I think, and then I do it some more.  I live for the hours between and around and instead of Jonah attacking.  I have bite marks, bruises, hair ripped out, my nose feeling like it’s been smashed into my brain, sore spots all over my body.  Only three times yesterday, he attacked.  Only.  Smashed glass and overturned chairs, cranberry juice dripping from walls.   My tears.  Sobbing.  Shaking.  Trapped.

The thing is it is 6:02am and Jonah is making noise from his room and we are alone and I am afraid of my eight year old son.  I am typing quietly, pressing the keys slowly so he does not hear and stays in bed.

The thing is I am angry.  I am irrationally angry at so many people.  I am angry at everyone who gets to live their lives in peace and calm.  On Monday I will arrive at work and there will be conversation of weekends spent “not doing much” or maybe going to a party, or just watching whatever sports game people deem important and fun right now.  Of dinners and friends, of haunted hay rides and leaf-peeping and apple pie.  Of blessed normalcy.  I am angry because there is no chance of that for me now, not a snowball’s chance in hell of any of it, and I am envious, and sometimes bitter, and I walk among all these people everywhere and even if I share with them some piece of my story nobody who hasn’t lived it has any fucking clue and most don’t care anyway.

The thing is I am resentful.  I am resentful that my husband has left me to pick up the pieces.  I am resentful that Child Protective Services has come to my home and that they took pictures of my son’s bruises and interrogated me about what Andy did, and for how long, and did I know about it, and then lectured me about how it could’ve been just like Jonathan Carey, that he could have killed our son.  Lectured meGo up to fucking Saratoga and lecture him, I want to say.  Go away.  I need Adult Protective Services.  Where the fuck are they?

The thing is I know Andy is not violent.  I know CPS is painting a picture of him that is inaccurate, and ugly, and anything I say to the contrary makes it sound like we were in some sort of secret pact to silently abuse our son, and that pisses me off too.  Andy is a good father. When we had decided to separate a few weeks ago I had no compunction at all about leaving him to be the stay-at-home parent in the house with Jonah and me getting an apartment somewhere.  Of course now that is impossible; I am left to work full time and care for Jonah, and it isn’t fair, and I want to scream and throw a tantrum.  I have a whole new appreciation for single parents everywhere, disabled kids or no.

The thing is Andy calls me 2 or 3 times a day and I try not to let him in on how hard it is here because I know he feels guilty and awful and I know he is trapped too, in this depression and in a program where they have to let him out for him to go — and even when they do let him out, they probably won’t let him help me with Jonah, at least not for a while.  But yesterday when he called at 8:30pm I was lying in bed exhausted and empty and I told him about the day.  Just hang in there, he told me.  I’m so sorry.

The thing is I want help and yesterday there was no one to help me.  My parents tried but they saw the attacks — my dad for the first time — and I think it shocked the holy living shit out of him.  It’s one thing to hear me tell of an “attack” and it is something else entirely to witness it.  At least they cleaned up the aftermath for me while I held Jonah.  Other friends and family want to help but I really can’t have people here – it agitates Jonah – I even had to ask my parents to leave yesterday – and I don’t know what help to ask for.   Please leave some deliciously prepared food on my porch?  Please whisk me away from all of this?  Please trade your life for mine, even for just one day?  Please just don’t leave me, even though I am so incredibly bitchy and raving and messy and weeping?   Please care.  Please pray.  Please please please.

My cousin D came over after I texted her in desperation; she was my savior, speaking to my parents, teaching them how to do holds, telling me that if I need it I can and should call a crisis center who can come and help.  She saved (salvaged?) my day.  The thing is even she cannot fix this.

To top it all off my sink is clogged and there is water and food gunk in there and the Drano didn’t work and there is laundry to do and dried spills to clean and another day to get through before I can escape back to the office and the people with their normal lives for me to watch, like I am an child pressing her face against a glass wall looking in at a party I’m not invited to….that I’ll never be invited to…

The thing is I am tired.

I don’t mean in the I want a long nap way, but in a soul-tired torpor fog way that feels like there’s horror mixed in.

The thing is I don’t care anymore how self-pitying or awful this sounds.  I just don’t care anymore.

The thing is I have to believe that I can hold life like a face
between my palms, a plain face,
no charming smile, no violet eyes,
and I can say, yes, I will take you:

I will love you, again.

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