family

Disability Day of Mourning

candlelight candles
Photo by Irina Anastasiu on Pexels.com

Every year on the first day of March, the disability community remembers those with disabilities who were murdered by family members or caregivers. In many cases, the murder is a filicide – a parent murdering their child. The reason to separate out the murder of those with disabilities is because of how the murders are reported, discussed, and excused.

When I shared information about a vigil last year, one response stuck out: Do we really need this? How often does it happen that we need to actually have this day?

In 2001, Andrea, a mother, murdered her five children. She drowned them, one after the other, because she thought they would go to hell when they got older. By drowning them, she was saving them, guaranteeing that they would go to heaven. She was convicted of murder, even after having expert witnesses testify that she was suffering from mental illness, including postnatal depression and apparent psychosis. Yates was sentenced to life in prison.

In this case, the sympathy goes to the children. They were innocent. They were babies. They were murdered by their own mother. She thought she was saving them, keeping them safe, making sure they had a good future. The public was outraged. How dare she think that she could decide what their futures would be like? Who cared if she was mentally ill? This crime was unthinkable – unforgivable!

Fast forward.

In 2016, a mother, Bonnie, murdered her daughter, Courtney. The mother drugged and killed her daughter. The mother said that she was worried, and that her daughter would only be safe and happy in heaven. The mother was sentenced to four years in prison.

Four years.

The outrage was for the mother.

The state’s attorney said “this case was a tragedy for everyone involved and given the tragic extenuating circumstances, we felt that a term of probation rather than imprisonment was the appropriate sentence.”

The state’s attorney.

The state didn’t want her to go to prison.

The state felt all she  deserved for murdering her daughter – for drugging and killing her daughter – was probation.

What were these “tragic extenuating circumstances”?

Courtney, the daughter murdered by her mother, had cerebral palsy and severe cognitive defects. She was 28 years old and required nearly constant medical care. She had been adopted by Bonnie when she was five years old. Bonnie adopted Courtney with the full knowledge of her medical needs.

Bonnie, instead of being thought of as a murderer who needed to go to jail for life, was instead praised. Her mother, father, sister, and friends discussed her great, boundless love for her daughter. They viewed her action as justified – as a mother trying to do right by her daughter, helping her daughter go to heaven.

In both cases, mothers were trying to save children they loved. In both cases, mothers committed murder.

In one case, the mother was viewed as evil. She had to be punished. It didn’t matter that she thought that she was savings her children and sending them to heaven. What she did was horrific and wrong.

In one case, the mother was viewed as a good woman. She needed sympathy. It was important that she thought that she was saving her child and sending her to heaven. What she did was kind and compassionate.

That is only one example out of many. The disability day of mourning website has lists of people with disabilities who were murdered by family members. They list them by age, by geographical location, and by year. The list they have is not complete, of course. They can only list cases that made it into the news, cases where the murderer is known, cases where the face that the victim was disabled appears in the news.

The disability day of mourning is meant to be a time to think about how we respond to these events. We are outraged when someone kills their child, unless we think that, somehow, the child caused undue stress on the parent. We find it a kindness that the parent was concerned about the child’s life, the child’s future. We praise the mother who murdered her disabled daughter because she wanted her to go to heaven; we condemn the mother who murdered her non-disabled children because she wanted them to go to heaven.

This is what I say when someone says to me: Do we really need this? How often does it happen that we need to actually have this day?

Yes, we need it. It happens more often than you think.

Sources:
Mom sentenced to jail for killing disabled adopted daughter
https://www.cnn.com/2016/05/18/health/mom-jail-killing-disabled-daughter/index.html

Yates: I’m Saving My Kids From Hell
https://abcnews.go.com/WNT/story?id=130284&page=1

 

Uncategorized

Judge not, lest ye…oh, screw it, just don’t judge.

Lady JusticeFor anyone who follows my personal blog, you know that I spent this past weekend at a personal retreat. It was an awesome experience, but my cell phone service was spotty, and I tried to avoid being on the Internet too often. I talked to Patrick, and he kept me up to date on things. I knew Simon had a cough, he’d had it when I left, but it hadn’t seemed to get much worse.

On Monday morning, the day I was leaving, my phone missed a call, but I saw a message pop up. I listened. It was Simon’s school nurse, and she left a terse message, telling me to call back. No details. No nothing.

I was on my way to mantras and breakfast, but I called as I walked, worried. It turned out that Simon had been coughing so hard they thought he would throw up. But he had stopped coughing. He had no fever. His color was good. He seemed to feel fine. But he had coughed.

Had he been coughing that weekend, she asked.

Well, I told her, I knew he’d been coughing a bit last week, but I hadn’t been home all weekend, I’d been away, so I wasn’t sure.

Oh.

That’s all she said.

Oh.

And the way she said it. The full weight of judgment was upon me.

How could I not know if my child had been coughing? How could I go away? Why was I not right there, right then, to come pick him up?

I reiterated that he had a cough when I left, that he often coughs until he throws up because, like me, he has a horrible gag reflex, and that it doesn’t seem to bother him when he throws up (he has thrown up from coughing in the middle of the night and gone right back to sleep, so we don’t find out about it until the next morning…).

I told her that I was about five hours way, so if there was a problem, she should call Patrick because he could pick up Simon if it was necessary, but that I would obviously not be able to since I was, as I had said, five hours away.

I felt her grumpiness through the phone. I ignored it.

Later on, she called Patrick because Simon had been coughing even more. He went to pick up Simon. She showered praise on Patrick. Thanked him for coming. Oh how wonderful he was to take the time to get Simon from school when he was sick. How wonderful.

In direct opposition to his slacker, loser mother, I’m guessing.

Why did she feel the need to judge me? Why did she feel she had the right to judge me?

I know I’ve said this before, maybe even in a different Simon blog, but there was one important thing I learned when I worked a job at a hospital oh so many years ago. It was the platinum rule.

For those who don’t know, the platinum rule is better than the golden rule.

Everyone knows the golden rule: do unto others as you’d have them do unto you.

But that doesn’t really work, does it? Because some people believe in stoning others for their sins. Some people believe that you need to have a quiversful of children. Some people believe in forgiveness. Some people believe in an eye for an eye.

The platinum rule fixes that issue.

The platinum rule states that you should treat others the way they want to be treated.

Amazing, right?

Treat people the way they want to be treated!

Me? I prefer not to be judged when I’ve done nothing wrong. I can sometimes go away, whether for business or pleasure. I can sometimes not be able to drop everything and rush to my son’s aid, especially when his father is five hours closer than I am.

And I can avoid judgment from people who don’t know me.

Now for something completely different:

I want to give a huge shout out to Behavior Plus. I went ahead and showed Simon a video of fireworks (the BBC fireworks from January 1st of this year) and let him know that we could only talk about fireworks once a day. He was welcome to watch the video – a full eleven minutes of fireworks, and talk about fireworks the whole time. But once it was over, that was it. He watched the video once, and since then, he has only brought up fireworks once a day. When he does, I let him focus on them for a few minutes, then remind him that he can’t talk about them until the next day.

I honestly did not think it would work. He is not very verbal, and he does have a lot of issues understanding days and weeks and months and, well, time in general. But he’s totally latched on to the idea that he can only talk about them once a day.

Goal!

Uncategorized

What’s the opposite of “elopement”? How about “criminally negligent caregiver”?

Van image by dantada by morgueFile.com (Not a van actually involved in either case...)
Van image by dantada by morgueFile.com (Not a van actually involved in either case…)

First, let’s get through the definitions.  Elopement, as it refers to autism and other disabilities, occurs when someone wanders away from a “safe environment.  Typically, they will leave to get something of interest, such as water, the park, or train tracks – or to get away from something, such as loud noises, commotion, or bright lights.”  As AWAARE.org points out, “dangers associated with wandering include drowning, getting struck by a vehicle, falling from a high place, dehydration, hyperthermia, abduction, victimization and assault.”  Other terms for elopement are wandering, running, bolting, and fleeing.  It’s dangerous, and it happens all the time.  In fact, just in this past week, several children engaged in elopement behaviors, and not all of them were found safe. 

But now let’s move on to criminal negligence.  If you believe dictionary.com, criminal negligence is “recklessly acting without reasonable caution and putting another person at risk of injury or death (or failing to do something with the same consequences).”  To be fair, the laws vary from state to state as to what actually constitutes criminal negligence as it often has to have a higher degree of culpability than just plain old simple negligence, and in some cases, state law will define it to make sure that it is “disregarding known or obvious risks to human life and safety.” 

So that’s clear now, right?  Time to move onto secondly…

There were two cases this past week, both in Texas, that are to me absolutely horrifying.

In the first, here in the Houston area, a 57-year-old woman who is autistic, cannot speak, and suffers from a heart condition, was left in the back of a van for five hours.  Her driver was supposed to take her to an adult day care.  Instead, he left her.  At this point, no charges have been filed, and in this version of the article, it makes it sound like an accident.  But in a version that has since been removed, family members had commented on the fact that she had bruises and injuries as well, making them fear that it was more than just leaving her in the van.  Is that part true?  I don’t know – news isn’t always accurate.  However, at this point, she is unconscious and in the hospital with no statement on whether or not they think she will survive.   

In the second, up in Dallas, a man (age currently unknown) with special needs and “the mental capacity of a small child” was found dead after he’d been abandoned in a Honda CRV.  The home he’d been living is was supposed to drop him off somewhere off-site for the day; apparently the neglected to do so and neglected to notice him all the way back to the home, and then they further neglected to notice he was still there when they parked and went inside.  It was at least five hours for him in that heat. 

I’m just absolutely horrified that this happened not once, but twice, and both times here in Texas.  What does this say about the “homes” these people are living in and the care they are receiving?      

Hubert Humphrey once said, “The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those in the shadows of life, the sick, the needy and the handicapped.”

I think we can tell how moral Texas is.  We do not have enough laws in place to protect those who need protection, and when there is a breakdown and rules and laws are not followed, there is no follow-through on those protections.  Why has no one been charged?  How do you forget another human being?  These are adults; they are noticeable, and they have special needs that need to be taken into consideration.  Yet somehow in both cases, they were ignored, and being ignored led to one being hospitalized and one being killed. 

Obviously, this hits home for me.  I worry about what will happen to Simon one day in the future.  Will he get ignored and left in a van?  Will he be mistreated by caregivers?  Will anyone step up for him or stand up for his rights and needs? 

I can only imagine how the families feel, and I can only imagine what the individuals went through during their ordeals. 

What I don’t have to imagine is what should happen next. 

We need to know when these things happen, and we need to make noise about it.  We need to be vocal about what is happening around us and what needs to happen in response.  If these were more heavily reported and spoken about, maybe something could change.  Maybe those of us who rely on other caregivers will not have to be constantly living in fear that someone else’s mistake will become suffering for our family members. 

Uncategorized

Bearing my Soul: The Fourth of July, Fireworks, and Jealousy

Image
Bearing…by RChall at morgueFile

Yes, that’s right.  Not a misspelling or typo.  “Bearing.”  Why do I say that?

Let me start by saying that I have been working on this blog for over a week now.  Some of my original notes go back over a month.  So I’m trying to pull all those thoughts together, and there may be some weird transitions.  Fair warning.  But I think it’s worth your time to read.

Image
Not quite 23 years ago…

To be fair, it’s more than a month worth of thoughts.  It actually goes back 23 years ago.  Seriously.  Twenty-three years.  I took a class to learn to play guitar.  And my guitar teacher asked me out.  Our first date was to the 4th of July fireworks in Maplewood.  The days before cell phones.  We tried to meet “at the bank,” but there were multiple banks, and it took us a while to actually meet up.  Obviously, eventually, we did find each other, and we got to go watch the fireworks.

Now we can flip through those 23 years to present day.  On this 4th of July, we decided to take Simon (now 11 years old) to the fireworks.  For those who don’t know him, he’s autistic, and he has a number of sensory issues, so we hadn’t taken him before.  But this year we decided to try.  He was on a new medication (that he isn’t on now – more on that later!), and we thought it might help him enjoy the fireworks.

Image
Fireworks at ACC, 2013

And you know what?  He loved the fireworks.  Seriously loved them.  Knelt down on the blanket with us, rocked back and forth, and kept saying, “Fireworks!” and repeating the warning we’d given him, “Loud!” but he didn’t seem to mind the loud at all.

So where does the jealousy come in?

We didn’t go to this year’s fireworks alone.  We went with our neighbors.  They have two kids younger than Simon.  Both had already seen fireworks.  Both, when the ice cream vendor came along – wanted and ate ice cream.  (We bought some, and he tasted it and refused it…although that may have been because it was some nasty ice cream…)  (But I digress…)  The point is that Simon was having his first fireworks and unable to communicate what he really thought, other than the words we’d given him, and it was years after the average age.  Which leads to so much more…

We had to take him off the medication he’d ben on that day because we realized that, while it helped him focus, since it was a stimulant, he was beyond cranky and irritable.  Before the med, he wanted hugs and kisses and attention.  On the med, he made a lot more frustrated grunts and did a lot more frustrated behaviors (self-injurous), and wanted nothing to do with human contact.  Focus is great, but misery is not a good side effect.

And now’s when things get – I think – even more confusing.  And overwhelming.

I don’t want my child to be a guinea pig.  I don’t want him to be over-medicated.  I don’t want to just pile on medications, each one having side effects that other drugs are supposed to cover.  And it goes beyond the medication and its controls.  It goes to the question of artificial constructs in his life.

In June, he had a birthday party.  He wanted a party.  He likes parties.  He may not eat the cake, but he likes to blow out of the candles.  He may not play with the toys, but he wants to open the presents.  But did he care about the other people there?  We invited his “friends,” but are they really his friends?  Does he consider them friends?  Does he have a definition of friends?  He didn’t seem to care at the party, but do we know what he cares about?  We construct these things for him to try to give him a level of normality, but is that a good thing?  A necessary thing? 

And, again, jealousy comes up.  Other kids, by the time they’re 11, have friends.  They play with toys.  They eat cake.  They answer questions.  Their parents don’t wonder how fair their children can come (or go) or how hard to push to try to achieve things.  Where do we draw lines?  Where do we say, “Screw it all! Let’s just aim at being happy!”  When do we stop questioning the choices we make and the life decisions we have to make for someone else – someone who has feeling we may not understand?  Wants and desires we can’t conceive of?  A lack of patience we can’t expect to go away?  No method of communication for these things?

Now – another shift.

Back to medication.  We decided that the medications he currently takes are too many and too unclear.  He had gotten up to four different meds.  One for aggression (that’s actually a drug for schizophrenia).  One for anxiety.  One for focus and to help calm him a bit.  One for ADHD.  And then we stopped the ADHD drug since it was a stimulant, and its original purpose was to help him focus so that he could finally be fully potty trained.  And it sure wasn’t going to help with that. 

So when we stopped drug number four, which was not the first time we’d tried a stimulant, we decided to rethink the medication.  What about dropping them and starting over?  Why give him all these meds, no completely sure how they were truly functioning or whether they were truly necessary anymore?  We went to his psychiatrist, and she went for it.

We started peeling back on the drugs.  We started with the first one – the aggression/schizophrenia drug – dropping it from .75 to .50, with the intention of going to .25 and then off.  We moved it to .50.  And then we got texts/messages from his school (he’s in their “Extended School Year” program for the summer).  He’d had a major meltdown and needed to be restrained.  Immediately, those questions popped up.  Was it the reduction in meds?  The fact that another child was screaming and his sensory defensiveness kicked in?  The fact that he’d been in a bad mood because he’d had his television interrupted to go to school?  His upset stomach?  Was he overly tired?  Overly excited?  Anxious or stressed because he’d just started back up at ESY after a week off?  Something we couldn’t even guess at?

Image
Messages in stone by Darren Hester at morgueFile

The head of special programs at his school had the right attitude, though, when my husband texted back a “Sorry” in response to the incident.  She texted that “You should never apologize for your child.  He’s trying to communicate something, and it’s our job to figure out what that is.”  (By that time, he had completely calmed down and taken part in a “pretend cooking” class.)

But even then…how do we know or judge anything?  What was that message he was trying to communicate, and will we ever get it?

Uncategorized

What Autism Awareness Is Every Day for Me…

ImageIt’s May.  Autism Awareness Month may be over, but I’m still plenty aware of autism. 

Simon turns 11 next month.  Eleven. 

He’s going into the fifth grade. 

He still refuses to poop in the potty. 

He likes to sleep on a futon mattress that’s on the floor. 

He can draw and write well, but he can’t do buttons or zippers easily.

He can’t tie his shoes or ride his bike. 

He can’t answer questions.

He really like to say “no.”

All of his favorite foods are a shade of yellow or orange.

He wakes up in the middle of the night and plays for a bit before going back to sleep.

He can read most words, but he doesn’t understand the concept of a story. 

He likes being hugged and tickled.

He can’t take standardized IQ tests.

He’s cute.

He smiles a lot.

He asks for help when he needs it.  Sometimes.

He doesn’t understand when the power goes out.

He likes when it rains.

He’s scared of birds.

He likes music and making noise.

He doesn’t make friends, but somehow he has friends.

He doesn’t like it when I try to sing along with the songs from any of the shows he watches.

He likes to swing and go down the slide.

He likes to swim.

He likes animals.

He cries, and he pinches people.

He takes psych meds, but they don’t seem to be working too well right now.

He figured out how to use Netflix pretty quickly once he realized that Blue’s Clues was on it.

He likes to go shopping…but then he likes to come home.

He likes hiding under blankets.

He likes bubbles and Play-doh.

He likes coloring with crayons.

He likes holidays.  All holidays.

He likes going for walks.

He likes riding the bus to school.

He likes putting stickers on his hands and arms.

He like snuggling.

He loves the beach.

He likes going for car rides.

Obviously, there’s a lot more to it than that.  And this doesn’t even begin to explain Simon, how complex he is, or how complex autism is.  But it’s a start…

Uncategorized

The Curious Incident of the Girl with the Cheeseburger

Cheeseburger By Renee Comet (photographer) [Public domain], via Wikimedia Commons
Cheeseburger By Renee Comet (photographer) [Public domain], via Wikimedia Commons

I admit, I get outraged easily.  It doesn’t take much to get me all riled up.  So it’s no surprise that I’m all up in arms again, but this time it’s about something both important and timely.

A picture is flooding the web.  A little Autistic girl with her Chili’s cheeseburger.  And everyone thinks it’s “cute.”

No.  No, it’s not!

But let me explain.

First, I don’t mean the kid isn’t cute.  She is.  Total cutey-pie.

Second, I don’t mean to say anything bad about Chili’s or how they handled the situation.  We’ve had plenty of our own experiences, like having to order non-grilled grilled cheese sandwiches for years because Simon would only eat plain cheese sandwiches (literally two slices of bread with some cheese in between them…and then he’d take that apart to eat the bread and cheese separately).  But I digress.  Chili’s handled the situation wonderfully, and the wait staff deserves serious kudos.

So why do I have a problem with it then?

Because while everyone seems to be looking at the picture and saying it’s cute, it’s not.  It is an example of a child who was suffering and had difficulty expressing herself due to a disability.  Disabilities aren’t “cute.”  Being unable to tell someone you’re not happy or hurt or in pain – not cute.  Her need to have the burger whole and “unbroken” wasn’t just a kid wanting crusts cut off because she didn’t like them.  It’s a part of the rigidness and enforced “sameness” that goes along with Autism.

I blame it all on “Rain Man” (the movie).  The movie portrays a quirky but intelligent character.  One who may need help but is overall satisfied with his life in an institution (which is wonderfully unrealistic as I look back upon it now, FYI).

Then we get to see all the “wonders” of people with Autism.  People who go up in a helicopter and then can draw New York.  There are stories about brilliant people who were probably on the spectrum

And all those things are great.  Maybe.

But that’s not the life of your average Autistic child. 

They may lash out because they aren’t able to communicate.

They may throw tantrums or have meltdowns because things don’t follow expected patterns that they have become accustomed to, so they become overstimulated.

They may suffer from other issues and related disabilities and may have no way to communicate those issues or disabilities.

So while everyone is busy focusing on the cute girl with the broken hamburger, think about how you’d react to a 30 or 40 years old woman who did the same thing.  Or a ten year old boy who stims and flaps his hands and arms and keeps loudly repeating Blue’s Clues when you take him to a restaurant.  Will you still think it’s cute and want to help? 

Uncategorized

Why the world is a scary place, part 8,345

Prison image from kconnor at morgueFile (http://mrg.bz/od4grb)
Prison image from kconnor at morgueFile (http://mrg.bz/od4grb)

As anyone who knows me (or has read one or two blogs on here or any of my other writing) knows, my son is autistic.  We have pretty much acknowledged that, while we aren’t stopping trying and while we wouldn’t give up, we know that he will probably wind up in an assisted living type circumstance where he will need help with his daily life.  We’re lucky in that we have lots of insurance for when we’re gone, and we know how to apply to get him what he will need.  In fact, we’re already on waiting lists because many of them are eight to twelve years long (no joke).

However, for those that aren’t in that position, the world is, simply put, fucked up.  I prefer not to go all out on the cursing in my blog, but this is one time it deserves it.  Lubbock, Texas, has a state-supported living center.  In 2009, they were investigated.  At the time, they were at 20% compliance.  Wait, let me repeat that.  Fucking 20% compliance.  20%.  20-fucking-percent.

In the past four years, though, they’ve made gains.  To 23%.  Wait, let’s go over that one again, too.  In four years, they improved less than one percent a year. 

The state home is meeting requirements in 37 out of 171 areas. 

And that is – scarily enough – not the worst of it.  Between January 2011 and August 2012, there were 202 allegations of physical abuse and 188 allegations of neglect.  Now, to be fair, only 50 allegations of physical abuse were substantiated, and only 83 allegations of neglect were substantiated.  But a lack of substantiation doesn’t mean it didn’t happen; it just means that it wasn’t proven.  And with the way things work, how long did it take to see if these things were true?  Long enough that it *couldn’t* be proven?  And how many people couldn’t even make allegations because of their conditions?

And, because I want to keep being fair – there’s one more thing you should know.  Remember the year and a half including 202 allegations of physical abuse and 188 allegations of neglect?  Here’s the thing you should know about that.  There are only 211 residents.  What do these numbers tell us?

Now, again, I want to be fair – I do not have the 500+ page report that details all this, so I don’t know if multiple allegations came from a single individual.  In fact, they probably did.  But it’s still just beyond troubling that there are only 211 residents and 202 allegations of physical abuse.  Those numbers just seem overwhelmingly out of whack with a world that cares about the people in it.

I know I often quote from Hair, and maybe because that’s because I’m a hippie at heart, but sometimes it’s just so appropriate to ask “how can people be so heartless?  How can people be so cruel?”  What is wrong that this is going on, and no one is fixing it.  Yes, the state is stepping in now, and they are claiming that they will do evaluations every six months with plans for the state home to hit 100% compliance in four to five years.  But what about those four to five years for the residents?  They’re expected to keep suffering while the state slowly fixes a world that is abusive and neglectful? 

No, I don’t know the solution here, but maybe we need to start looking for one.  This isn’t the only state home, and I’m afraid that if I kept looking, I would find even worse numbers out there.  But for us as the general public to act horrified when we hear about an individual child abused, why aren’t we outraged now?  Why aren’t we getting the people involved removed and putting in a whole new and well-trained staff?  Why don’t we care enough to speak up and step up?