Brilliant idea re-visited
By now you have all read the article mentioned in the last post. Hopefully you looked at the comments left on this blog and have thought about it! What, you read my blog for simple mindless pleasure?
- Many states have Safe Haven laws (basically you can abandon a child up to 30 days old at a safe, designated place, no questions asked)
- We read too often of either filicide or murder-suicide by parents of disabled children
- Fighting with a school district for a residential placement for a disabled child can take months and years and a lot of money for lawyers and advocates
- Many state programs are lacking in many ways
- There are few, if any, options for a child as severely involved as Pearlsky and many of “our” children
- What on earth would Social Services do with Pearlsky?
The mother in the article apparently did research and found Tennessee to be the best for healthcare (note to self: do not hire this woman as a researcher) and, in her mind, was doing something right. We have no clue what was in her mind, why she did it, etc. but the daughter did appear to be clean, healthy, and cared for. Although I find the action abhorrent, I will not judge the mother with the lack of information I have. Nor would I want to sit on her jury (if, in fact, she had violated a law). As noted in the comments on this blog, had she bought her daughter a drink before leaving, she would have violated a law!
I know despair. I know the pain of being alone with a disabled child. I know holding a child night after night when she is wracked with seizures. I know days and days of nights with no sleep. I know the thoughts, the ones we do not say out loud, the wishing your child would just die, or disappear somehow. I know the thoughts about the gun in the nightstand and questioning if once the filicide is done would I really have the guts to then use it on myself.
I had an option the first few weeks. We have safe havens in my state (although probably not 19 years ago). What options do I have now? When we try our best, give it all we have and then hit that wall … sometimes it is a big wall and comes up very quickly. Where is the safety net? Where is Pearlsky’s safe haven? Where is mine?
(No, I am decidedly not there now, this discussion is because of the article, not a crisis with me. Not now at least.)
Your honesty really hits HOME with me and I am sure many others. There have been times when I thought felt overwhelmed at my “breaking” point, thankfully by some grace it passed or I adjusted. My fear is Ana’s future of course; luckily I have two other children that are “normal” and I hope and pray that they will help her somehow and love her always. I hope that they have strong love that maybe maybe will let them have less breaking point capacity. But who knows, I certainly never saw this life back when I wanted to be a mom. We only have here and now and right now Ana’s safe haven is me and SD you are pearlskys safe haven. She loves you and in the end LOVE has to be enough! But when I get to heaven watch out! I have a long list of complaints!
Heaven scares the crap out of me. I believe Pearlsky will be able to talk, and I fear what she will say to me. How messed up is that?
It’s not messed up at ALL it is honest. And to be honest I don’t care what Ana’s complaints are in heaven I IMAGINE being completely over joyed just hearing her outer voice and seeing her run away from me……(my dream of seeing that pony tail swish). You seem to be an amazing DAD, remember we all have complaints and issues with our parents your girl is no differ in that department! But your love for each other out weighs the complaints….right!?! Since we are sharing messed up thoughts here’s mine…..I wish that Ana could learn how to say just one good curse word…..so she could say it to all the people she hates!
Ivy, one of my proudest days was when my then 3rd grade daughter learned to sign ‘bitch’, and she used it most appropriately to describe her teacher at that time. Since then, she has also learned to sign ‘What the hell’. I LOVE that girl 🙂
I LOVE that! Thank you for sharing and making me feel ever so slightly less insane.
When Nevada had that brief loophole in their law, we thought long and hard about taking our oldest there. She NEEDED 24/7 care in a residential center. She had already injured my younger child and myself several times. She was a constant danger to herself and others. ALL of her doctors (I think there were 6-7 at that time) agreed that she needed long term residential care to have any hope of a functional adult life. We had been denied by the school district, denied by Medicaid, denied by the state grant program and denied by post-adoption support. We had appeals filed everywhere and the window was closing in Nevada. Thankfully, we won an appeal before we had to make that final decision.
The sheer number of children — most with severe mental or medical needs that were left there speaks volumes to the accessibility of care for our kids. I vividly remember one mom who had several 3 inch binders with her daughter’s medical history, signed consents for Nevada DCFS to speak to all of her doctors, and a month’s meds for her child. She was devestated to have to do it.
We need better options for our disabled children and adults.
I don’t have much to add, just that your post gets me thinking about how we judge others when it turns out that what God put on their plate, they couldn’t handle.
It goes for all sorts of people, including parents of “normal” kids who have all kinds of stress, especially if something else happens like unemployment, a death in the family, etc; parents who think they can handle having more kids and then find out they can’t; parents who didn’t want to be parents but the birth control failed; etc.
At what point does “parents have to step up to the plate for their kids no matter what” turn to “put yourself in that person’s shoes and think about what kind of stress they might have been under, and you’ll conclude that many normal people would do the same thing”?
I don’t have an answer to that question. It seems according to Tennessee law the answer is “when the kid turns 18.” And in many states, with safe haven laws, the answer is “until the child is 30 days old.” In between 31 days and 18 years, the law (and society generally) pretty much agree that if you can’t step up to the plate — if you can’t handle what God gave you — you are at best pathetic and at worst evil. But I know from reading your blog that can’t always be true. And, come to think of it, the law also knows that’s not true, because there are SOME services available to help, like extended school year and such — indicating that yes, society expects you to be there for your kid (not to abandon her), but also expects that you need some sort of help (and then makes the help hard to get).
Just thinking out loud. I don’t really have any conclusions.
I won’t judge. I agree with a lot of your statements and the statements of your commenters. But I also know, that no matter what, I could never abandon my significantly disabled child.
I chose my child (through adoption) and maybe that makes my thought processes different. I don’t know. But I full well knew the life I was choosing when I adopted her. Maybe it is different for someone who had no choice from the beginning…
Deborah, everything is different for all of us. We handle things differently, different levels of pain, etc. Of course there is overlap as well.
I could not abandon Pearlsky in any way, shape, or form.
What if anything do you think of murderers like Robert Latimore? Do they get a free pass?
Not a free pass, but compassion. Watching your beloved child suffer every day, it can push even the sanest amoung us over the edge.
Free passes may or may not come, but only after fully and completely understanding the situation.
No he should not get a free pass! I was not aware of this case until you mentioned it. But it is for ME no different then the case of Terry Schiavo. Compassionate kill an act of selfless love doesn’t wash on a personal level for me. My daughter is severely disabled as well and like his daughter (Robert) shows emotion such as joy. Who am I to say she would prefer death to HER life….her life is the only one she knows to her it may not be so bad. Just my opionion…..and like a wise person once stated “opinions are like assholes everyone has one”
Ivy, Hard to compare Schiavo and Latimore. The cultural response was quite different–one Canadian the other American. Latimore is all over the news since he was released from jail. Seems to me like the Canadian press is trying to rewrite history.
Erin, I spent the ages of 9 to 18 years old in severe pain and went through the medical mill. I suffered in the extreme. There were days I wished I could die. And looking back I shudder to think what my parents endured seeing me in agony. But we humans have a penchant for enduring. Not once did my parents ever waver or give me an indication of their inner turmoil. This is what great parents do. In short, I hit the parent lottery. I was blessed.
I’ll never pass judgment on anyone who does anything of that nature in these types of circumstances, having now lived through some experiences of my own.
There were times, Hell even the last weekend when we tried that last new med with Bennett and he was doing his best Rhino imitation into the wall and playing Walking Dead with me and Jen by biting us each so badly we were scared enough to get Carter out of the house for the next 24.
As we sat there during one of the storm’s eyes, sweating, bruised, we talked about situations where people do things to their kids. I brought it up. Not because I WANTED to do something to Bennett, don’t misunderstand me as I hijack your blog, I’ll always love my kid. But I just said something like…’Man, the world would judge us so badly if we let him walk out of this door and out of our lives because they can’t see right here, right now. They can’t see the look of absolute fear in our other son’s face.’
So we just talked about Life and stuff. The people ‘Out There’ who took it to extremes. But it always comes back to a couple of thing for us…and we’ve only been at it three years or so. I won’t bore you with all of it but the main thing I always go back to is if I ever sense that she or I is feeling like The Bennett Situation is too much I just go back and watch seizure videos and remind myself or her that he isn’t doing it anymore. Or I remind us that his MRI’s remain clean.
Look for some good amidst the bad. I could go on. I often do. But I have already broken my Blogjack Rule. Sorry dude!
Sometimes you make me sit back and say “wow.”
You’re a good man, Ken … and break your rule here anytime.
The important thing to remember with Tracy Latimer is that her condition was not as dire as depicted by her father or even her mother. Her doctors reported that she was doing well and there was plenty of other evidence that she enjoyed life and was generally happy. It was her parents that were not happy with her. This was not a “mercy killing” at all.
It’s one thing to not pass judgment…another entirely to not press charges. The woman should be charged and punished for what she did. Minimally, she should be forced into psychological counselling. The message is…wow, she had it so hard with her big girl ‘tard! Poor bitch, cut her a break. No way. Lots of people have hard lives and they either figure a way to deal, or do something stupid and get nailed for it. The fact that society hates disabled kids/adults is not a reason to excuse unacceptable actions with regards to them. There were other places to leave the girl, other ways to do it that would have been safer at the very least.
She couldn’t drop her daughter off in an Emergency Room or leave her in a church or nursing home or school? A bar??? The chances of someone not in his right mind, or looking for trouble are far greater in a bar.