Anniversary of the Law Suit - Part 1

You wouldn't think that someone like me would sue the State of Oklahoma on behalf of her foster children with disabilities - someone like me who HATES criticism and conflict - who would rather live in a cave than have to face the public with something controversial.  I can't speak for the other five parents who sued with me - maybe they are just braver or crazier than I am.  One of them said after the suit was over and we had won, "We were psychotically optimistic."  Very true.  But we did it.  There was nothing else to do.  We had tried everything we knew of to get changes made in the institution our kids lived in - just to make it safe.  We talked to DHS officials, state legislators, and anyone else who would listen.  There were plenty of promises made but nothing got better.  Some state officials told us it was hopeless.  DHS officials told us we were a vocal minority -  that no one else saw a problem. 

This year is the 25th anniversary of the year we filed suit, full of fear and trepidation, but determined.. This year the place is going to be torn down, blown up - whatever.  The State of Oklahoma has tried for all these years to sell it but no one bought it.  I think it's full of ghosts of the people who died there.  Officially, no one died there, of course.  People are so devious.  I've learned not to believe anything any more.  The way they made sure no one officially died there was to have their own ambulance.  When someone died they put the body in the ambulance and took it to an emergency room, so officially the person either died en route or at the hospital.

Our kids weren't in that place because we wanted them to be there.  They were there because we had no other choice.  All of our kids were severely disabled.  Most had multiple disabilities.  There were a lot of severe behavior problems.  Some of them had been kicked out of the school system because of difficult behaviors even though that was illegal.  The teachers had no idea how to cope with them.  One of them locked a boy in the closet a lot.  Another one carried a fly swatter and repeatedly used it to try to control another boy. 

Most of us had been to every doctor, psychologist, etc. that we could find to help us figure out how to care for our kids but those folks seemed as clueless as we were.  As they got older and bigger and harder to deal with, some of us had Plexiglas windows in our houses to keep windows from being broken, and there were locks on cabinets and closets to keep the kids from getting hurt.  Almost all of us had other children and the demands of the ones with disabilities were keeping us from being good parents.  One by one we decided to give up and let our kids go to the institution - which is what professionals had been telling us to do almost from the time the kids were born.  I was divorced and when my ex-husband remarried, his wife did not want him to help care for the kids so he brought papers to me to institutionalize our youngest daughter and urged me to sign them which I eventually did.

This year - the year of the anniversary of the lawsuit - when I mentioned the anniversary, a friend of mine said, "I heard that the plaintiff parents in that lawsuit were just unrealistic in their demands."  I almost strangled her.  But my program has taught me "restraint of tongue and pen."  So I didn't say much of anything.  But that sentence has been rattling around in my head ever since.  It took its place in history since I've heard that sentence over and over and over again.  I heard it from the state officials who thought the institution was fine.  I heard it from service providers who were providing care for our children in the community after the lawsuit was won and they were able to leave the institution.  I heard it from one of our own lawyers - and that made me the maddest of all.  In fact, I still get mad when I think about it.  It's incredibly sad that my friend, who knows nothing about the lawsuit, was never in the courtroom, who knows nothing about people with disabilities, would repeat a sentence to me that she heard somewhere.  Is that what the public knows about the lawsuit?  That the plaintiff parents were just unrealistic and unreasonable?  Breaks my heart.

Now that I'm writing a memoir, the story of the lawsuit will be part of it.  But today I'm feeling angry again about being called unrealistic, so I'm going to write just a portion of the story - the list of things we thought were wrong both in the institution and in the community.  I think I will feel better if I do it.  I will print some copies and give it to the next person that says something about being unrealistic and ask them to tell me after they've read it whether they are sticking with their story.

This group of problems at the institution were presented in court and verified by people who worked there, plus some more problems we weren't even aware of.  The State didn't actually argue that they were untrue.  Their defense was that they were working to fix them.  The court gave them over a year and brought in experts from around the country to help.  After nearly a year had passed, nothing was even a little bit better and the judge ordered the institution closed and community services be provided for the residents of the institution.  Here are just some of the problems we discovered after our kids went there:

1.  My friend's son was brought, on a gurney, to a hospital emergency room in a coma and shoved in the door.  The institution staff left without a word.  There were no papers with him to even identify who he was.  He was dehydrated and had aspiration pneumonia.  There were acid burns all down the side of his face from lying in his own vomit.  Probably the staff thought he was dead, since their practice was to drop people at emergency rooms who were already dead to keep deaths from showing up on their statistics.

2.  When we picked up my foster son to visit at home, he regularly had on clothes that were way too big for him.  His pants were usually tied on him with rope.  He regularly had a fungus infection of the scalp (caused by being perpetually dirty.)  One of his front teeth was broken off.  No one knew how it happened.  He frequently had cuts on his hands, arms and head from breaking out windows.  He cried desperately when we had to take him back.

3.  My foster daughter had both her front teeth knocked out - and, of course, no one knew how it happened.  Her clothes were not hers.  They were torn, full of holes, didn't fit and were filthy dirty as was she.  She had frequent staph infections all over her body which were treated with fermented radish water - prescribed by a doctor from South America who said it was an effective folk remedy from his country.  She too was desperately unhappy when we took her back after visits.  She would try to grab the steering wheel in the car to make us go back.

4.  All of the parents in our little group reported that their kids were in clothes that didn't fit and that looked like they had been dug out of the town dump. They were all being mysteriously injured. They reported that their kids were desperately unhappy.  Later we learned that one of the perks of working at the institution was that they administration looked the other way and allowed them to steal the residents' clothes if they brought other clothes to replace them.  Where staff got the replacement clothes I can't imagine.

5.  One of the doctors at the institution decided that my daughter didn't need the brace she wore on her right leg to keep it straight.  She has cerebral palsy and the tight muscles kept her leg from being straight which in turn kept her from walking comfortably.  Naturally her leg became more and more bent, which caused her to walk in a lurching sort of way, which in turn caused her back to become crooked.  They also decided she didn't need allergy medicine which caused her a lot of misery from allergy symptoms.

6.  After my friend's son almost died, we applied to volunteer in the unit where he lived.  Our motive was to try to understand how something like that could happen.  It was very hard to get permission to do this because parents were not allowed to see where there kids lived.  One of the parents, determined to find out what was really going on in the cottage where his son lived, sneaked up to the window of the cottage.  Staff saw him, called security and he was escorted off the grounds, with the warning that if he did it again, he would be barred from visiting again.  So it was a big deal to get to volunteer anywhere where parents were not allowed.  We were helped by the ombudsman that had just been appointed. She was a social worker that some of us knew because she had worked at a medical center where some of us took our kids.

When the administration agreed to let us volunteer, we were all put through training.  Everyone but me freaked and never came back.  I would be willing to bet that they hoped that would be how we'd react.  It didn't take more than a quick look around to understand what had happened to my friend's son.  There were 48 adults in the unit - all in huge metal cribs, some with plastic tops.  There were only two staff on duty.  The smell was overpowering - feces, urine and vomit.  Although adult disposable diapers were on the market, we were told that the institution couldn't afford them.  So staff sewed cloth diapers together to make them big enough for adults.  Dirty ones were just thrown in a huge pile in the corner.  Cockroaches were running everywhere.

The staff did not wash their hands between diaper changes.  There was one sink with bar soap but no one used it.  Of course, using bar soap is a great way to spread disease.  This might account for the recurring epidemics of shigalla (severe diarrhea caused by bacteria) that took over ever so often.  None of the staff seemed to know the names or identities of the residents.  I wondered how in the world they could know who to give what medicine.  They also fed people lying down.  They thought it took less time.  Actually, it just promotes throwing up.  Digestion needs gravity.  It explains my friend's son's aspiration pneumonia.  He probably threw up while lying down and breathed in some of it.

Oh my God!  Why didn't you all just go get your kids and take them home when you found all this stuff out?  What kind of parent would just leave their kids in a hell hole?"  I am imagining that a lot of people would think or say this.  We said it to ourselves.  So I should probably elaborate on what I said before about our having kept our kids at home as long as we could.  We didn't just keep them at home until it got difficult or until we were exhausted or until we were about to go crazy.  We went WAY past difficult, exhaustion and crazy before we gave in.  We really could not go on another day.  So we knew we had no choice but to leave them there and try to find some other solution.  Personally, I cried most every day and slept very little.

Well, didn't you bring these terrible things to the attention of people who could fix them?  I probably need to reiterate here that we wrote letters, met with people, begged, pleaded and yelled.  We were met with indifference, sometimes threats (if you don't like how we're taking care of your kid, you can just take him/her home and do it yourself), and personal attacks (like, you don't care about your children or you wouldn't have abandoned them here, etc. etc.)

What I did do to alleviate my kids' misery while we waited to see what the judge was going to say:  I took on some extra jobs so I could hire some help to allow me to bring both my son and daughter home more often.  I took my daughter to a doctor in town who worked with me to circumvent the doctors at the institution.  She gave my daughter an allergy shot once a week, and a birth control shot once a month.  I didn't request the birth control because I couldn't imagine that my daughter was sexually active.  But the doctor explained that she had several girls with severe disabilities in her practice who were residents at the institution who were raped and got pregnant.  Good God!!!  The doctor also prescribed a disinfectant for me to bathe her in three times a week when I brought her home and that took care of the staph infections.  My son was very tall and very thin because all you got to eat was what was on your tray for that meal.  He was perpetually hungry so I took him to eat pizza, hamburgers, and fish three times a week.  I also took both of them swimming once a week.  I asked all my friends to let me have any clothes in my daughter's size that they didn't want anymore.  I shopped garage sales and re-sale shops.  As a result I was able to bring her clothes every few days with her name written in them in indelible ink.  When I brought a new batch of clothes, the ones I had brought a few days before were always gone.  Eventually though, the staff in her cottage must have outfitted their kids sufficiently since clothes began to stay there for awhile.

Here were my unrealistic expectations:  That my kids would be reasonably clean, get at least some decent medical care, not be abused (certainly not raped!), get enough to eat, be supervised well enough that they would be protected from hurting themselves or being hurt by other residents.  I knew they would not be happy because they would rather be at home with their family.  I doubted that they would get much useful education. Since the teachers in the public schools didn't know what to do with them, I didn't think the teachers at the institution would either. 

Here's why my expectations were unrealistic even though I didn't know it.  I didn't know these things until much later:

1.  Neither the staff nor the administration had any actual training in disability or anything else that would allow them to work effectively in that place.  They had a lot of erroneous ideas - like feeding people lying down was efficient and safe. Like cerebral palsy is a disease that progressively gets worse.  Like punishment is the best way to handle people with difficult behaviors.  Severely disabled people don't have emotions and cannot feel physical pain.  Severely disabled people cannot learn anything.  The way we run this place is the only possible way to run this place.

2.  They were just people off the street who had the same incorrect ideas and prejudices about people with disabilities as anyone else.  Prevalent were ideas like these:  These people would be better off dead anyway.  They are worthless, not really human.  They contribute nothing to society.  They just take up resources that are limited and that should be used for people who contribute to society.  Their parents are bad people for putting them here anyway.  If they cared they would take care of them themselves. 

So no wonder they thought we were unrealistic.  But it's still breaks my heart that there is so little understanding of what that lawsuit was about.