A Girl, a Kidney, and the Living Legacy of a Lost Friend

Sometimes, there is good news in the world...

 

About a year-and-a-half ago I wrote this, http://planetjosh.squarespace.com/journal/2011/2/2/i-dont-know-emily-but-ive-met-her-kidney-and-im-following-it.html, the story of a kidney I met on Twitter and the young woman it was determined to belong to. Go read it, I've never met a nicer nor funnier internal organ.

Emily, despite needing dialysis 3x/week, having to live on severe fluid restriction and waiting patiently while friends and family tried to help but none would match, continued to live her life and got married last June!

But that was just the beginning of her happy ending because yesterday, she posted this video:

http://www.kidneyregistry.org/

Congratulations, Emily and Emily's Kidney, on finally finding each other! This makes me exceedingly happy :)

Living donation is an amazing gift, one that's been close to my heart for some time, even before I met Ms Kidney.

13 years ago while donating blood for a blood drive in honor of a neighbor's young son who'd passed away, I put myself on the National Marrow Registry. I have never come up as a match for anyone, including a friend who was also sadly lost to Leukemia 2 summers ago

But while she was still with us, many friends chose to join the registry - not just to try to help her, but to honor her legacy by potentially helping others. Unfortunately none of us were able to help Bernadette. But one of those friends recently came up as a match for someone else - and just this last week he donated his bone marrow to that person.  Two years later Bernie's legacy lives on, thanks to wonderful people like Tony (one of my former karate instructors), and hopefully others as well.

 

 

 

 

Thick Skin

We all need it to some extent.

I think it's safe to say that most if not all parents will spend some time in the spotlight of public scrutiny at some point because of their child(ren) - some times it's good, sometimes not so much, but kids are exceptional at grabbing attention and generally have no problem sharing it with you.

"Mom, that lady is going to die isn't she? She's smoking and you and daddy said that people who smoke will die." Me, at the tender age of 4, out loud to my mortified mother, as we were standing at a grocery store check-out next to a woman who was smoking.

(Apparently my propensity to speak my mind started early? Sorry, mom...)

You get the point. All kids do and say things that can focus attention on their parents, kids with special needs are not, in fact, special, in that respect.

But autistic kids' behavior can and does get people's attention more often than most. Because it's not always awesome , at least as far as the rest of the world is concerned. So as the parent of an autistic child you likely experience more than the usual amount of less-than-positive attention/judgement. I've written about this before, but more from the perspective of Toad's behavior or the actual responses of others to it. 

Not really from the perspective of dealing with it, though.

 

It's a bit of a shock, to say the least and a thick-skin is a requirement to survive. If you don't start out with one, you will likely develop one quickly because people are cruel. That's really the long and short of it. Or, you do what I did - because contrary to what you might think from reading some of my more recent posts, I do not have a thick skin, I never have - and you isolate yourself.

I did this early on and for me it was probably 50/50 - keeping us out of the public eye, but also keeping Toad from being upset as much as was possible. This was back in the days of his 3-hour tantrums and shredding the skin from his ears with self-injury. As much as I don't like being stared at or having horrible things said to me and my children, I also didn't like upsetting my son - clearly there were situations that were just too much for him, so why on earth would I insist on putting him through that? But, some things were/are necessary so the occasional trip to the grocery store (because you know, eating... ) was about all I ever did aside from the various therapies.

Ah, the grocery store. I say "the" as if there were only one, but in reality I shop at several, and especially back in those days, I think there were 6 stores on my regular list. Again, partly due to necessity (Toadie was GFCF for a couple of years) but partly design - I was afraid that the more time we spent in any given store, the more likely it was that we'd be asked to leave at some point.

So I spread the love and Toad's melt-down's around as much as I could.

Of course that doesn't, and didn't, stop the staring.

I have had more people staring at me and my son than I could ever possibly count. And it still happens, even though Toad is much more easy-going these days than he was when he was little, he still gets unhappy in public sometimes and at this stage of the game, he may not go on for 3+ hours but what he lacks in sustainability he has made up for with some serious volume. And pushing the back of his pants down. Which when combined, might be cool if you're a member of Wu Tang Clan, but not so hot at the local Safeway. I became much more comfortable managing him out in the world as the years passed, but the staring still gets to me sometimes.

What does staring accomplish, exactly? Aside from information gathering, which is understandable, what are we really doing when we stare? I ask because with kids like Toad, the disability is not obvious. So the information that people are looking for just isn't there. With the lack of an obvious answer/explanation, is there some notion that the longer you stare the more likely it is that the answer will magically appear? Or is it more of a means to communicate without actually having to take the step of face-to-face confrontation? I suspect it's a little of both, though more of the latter.

Staring is a way for people to say, "hey lady, wtf is the deal with your kid and could you please go away or at least make it stop?" without actually having to SAY it. Of course there are the occasional sympathy stares, you can tell the difference, but those are few and far between. Mostly it's the first one.

I have, over the years, perfected a stare of my own. I call it the "Am I making you uncomfortable? Good, because that's exactly what you're doing to us" stare. It's 100% effective. The frustrating part is, I'm more than happy to talk to people or answer questions if anyone were ever to bother to ask me what's going on, but no one ever does.

They just stare. Or make comments under their breath or to each other. Sometimes if I'm feeling particularly brazen I'll say something. But mostly I don't.

This is not to suggest that there aren't wonderful, understanding/accepting people out there. There are. But usually we find them to be people we encounter regularly, who have gathered some information about us in some way either directly or indirectly, or, have some experience in their own lives with autism already.

Now yesterday, I had the entirely un-anticipated experience of being the focus of the hard-starers at the grocery store - me, not Toad. And to be honest? Given what was going on, I can't really blame them. From the outside, not knowing what I knew, it must have looked pretty bad. You see Toadie's been sick for the last week or so. He's getting better, but not 100% yet, so he's been home. I didn't leave the house for the better part of last week, but the fever is gone, and even though he's pretty tired and has a bit of a cough, he's ok to be out for a bit now. I really had to go to the grocery store so off we went. Now one thing to know about the Toad-man: everything is sensory, right? This includes coughing. When he starts, he will often force it to continue to the point where he actually gags himself and, he has thrown-up as a result on several occasions. So I know to watch for this behavior, and, I know how to stop it. But I have to get his attention and I have to tell him "stop". You can see where this is going, right? We were at the store, and he wasn't too thrilled about being there and was making that known. I did my best to keep the plumber-pants at bay and just tried to get done as quickly as I could. He started coughing as we got to the produce section and he went in to the behavioral cough quickly - he wanted to leave, he wanted my attention, that was a very smart move on his part. But I knew what he was doing. After all these years I can tell when the cough changes to the one that he perpetuates. So I pressed on. But dude, the PRODUCE SECTION? Of all places, where the food is all out in the open and there's Toad sounding like his lung is about to make an appearance from his throat. I could literally see everyone moving away. Here's the kicker: in order to prevent him from self-induced vomiting via the forced coughing, I was in his face, telling him to stop. Which is what I need to do, and then he does, but to those who have no idea what's going on? Right. Mother of the Year right here, dragging my poor sick child to the store and look I'm all up in his face telling him to STOP COUGHING?!? Yep. For all I know I am now the subject of someone's cell phone video on YouTube titled: Parenting Fail and The Stir will pick it up and write something terrible (for the record - I'm not angry or yelling at him, but I HAVE to get his focus on me and that is just what works. Sometimes blowing in his face will do it too, but not when he's really in it). 

I can't blame anyone for the way they were looking at me yesterday. They had no way of knowing what was really happening. Still, not a very nice feeling at all.

 

SO. Aside from teleportation (duh!), the technological advance I think I'd really like to see would be Pop Up Video, except live. For those unfamiliar with the VH1 series, Pop Up Video basically took music videos and added "thought bubbles" but instead of thoughts, the bubbles had information about the making of the video, the musician, behind the scenes things, anecdotes, etc. Look, here's one now:

Ahhh, the 80's were fun, weren't they? :)

 

This would help. Little pop-up bubbles just appear and everything is explained with some humor. I don't need a smaller phone, nor a smarter phone, nor a phone that wants to be my personal valet. I need pop-up video for real life with the Toad.

 

Or perhaps just a thicker skin.

McCarthyism 2.0

For those unfamiliar with this, McCarthyism is a term we use today in reference to demagogic, reckless, and unsubstantiated accusations that often include attacks on the character/credibility of one's opponents, stemming from the actions and anti-communist paranoia of Senator Joe McCarthy (R) , in the early 1950's.  It is most commonly seen in the political arena, though I am going to be talking about its unfortunate prominence in the autism community.

In this case, instead of an attention-whoring, alcoholic, otherwise entirely unimportant Senator from Wisconsin, we have an attention-whoring, Playboy Playmate who's most notable clothed career moves include a sketch on MTV in which she appeared to eat her own vomit, and a film scene that depicts her sitting a large pool of menstrual blood. Yes folks, it's the one and only Jenny McCarthy, coincidentally named and sadly, just as ignorant as her predecessor.

Ms McCarthy is the face and puppet of the anti-vaccine/quackery embracing, autism hating movement in this country. Collectively pulling her strings are Autism One, Generation Rescue, and, just for that extra touch of poor judgement, Andrew Wakefield - a man who paid children at his son's birthday party to be the "subjects" for his scientific research; who's "study" was commissioned by a law firm hired to sue vaccine manufacturers (go figure... ); who's medical license was revoked, study redacted, and every and all of his so called "findings" have never been substantiated by any real science.

Autism One and Generation Rescue are a runaway train of fear-mongering, hate, and misinformation that prey on a vulnerable population - parents of autistic children. They use Ms McCarthy for recognition, and bewilderingly, credibility. Our culture inexplicably attributes un-earned/un-deserved importance and expertise to celebrities. Just look at the aftermath of that desperate-for-readers Time cover last week as a perfect example - in the midst of all the negative backlash, we suddenly had all sorts of "famous" moms speaking out in favor of breast-feeding older toddlers/children. Oh, well then it MUST be a good thing because THIS FAMOUS MOVIE STAR DOES IT TOO!! Because somehow, her celebrity has also made her an expert on parenting? I'm not saying it's right or wrong, my point is that our society gives celebrities power and attributes skills, knowledge, and credibility simply because we recognize them, and not because they necessarily have any more understanding or knowledge than you or I do. I don't know why we do this.

But we do it, and the anti-vax/let's take all your money for 978 different "biomedical treatments" quacks know it. So they plaster Ms McCarthy's face everywhere, promote her as the Mother Warrior she claims to be and she goes on tv and radio and anywhere she can to spread the fear and bring more to the fold. It's like a cult. Well, it's not just like a cult, I think that's what it really is, if you take a good look at it.

"A cult is a group or movement exhibiting a great or excessive devotion or dedication to some person, idea or thing and employing unethically manipulative techniques of persuasion and control (e.g. isolation from former friends and family, debilitation, use of special methods to heighten suggestibility and subservience, powerful group pressures, information management, suspension of individuality or critical judgment, promotion of total dependency on the group and fear of [consequences of] leaving it, etc.) designed to advance the goals of the group's leaders to the actual or possible detriment of members, their families, or the community."  

Louis Jolyon West, psychiatrist, human rights activist

Autism One and Generation Rescue fit well with most of those attributes. Excessive devotion/dedication to the idea that vaccines and the medical establishment/pharmaceutical companies are to blame for autism (among other things... ); that autism is something bad, that should be feared and "fixed" at all costs. While they don't necessarily isolate people, they do absolutely manipulate and debilitate through guilt/fear - you had your child vaccinated so it's your fault; IF you have your children vaccinated you are harming them, and, after all, autism is your worst nightmare; they prey on the vulnerable parents who are searching for their path with a new diagnosis or, cannot function if they have no one or nothing to blame. They certainly engage in aggressive proselytizing and are often threatening and violent in their vitriol. Advancing their goals to the detriment of others, or to the community? I'd say the significant decrease in vaccinated children/adults and subsequent increase in outbreaks of communicable diseases answers that question.

So, we live in an era where we have replaced Communist subversion with Big Pharma plots to poison us all.

Which is ironic as all hell given what you'll find if you take a little peek over at Autism One's website. If you can actually get through most of what is posted without hitting your head on your desk too many times, you will find gems like a featured speaker at their conference, Kerri Rivera, a Mexican "Dr" (yes, I use the title loosely) who claims to have "recovered" 38 autistic children by bleaching them, from the inside out. Yes, you read that correctly. She forces them to both ingest and be given enemas of industrial strength bleach, several times per day, to the point of causing diarrhea and fevers in the children, which she declares as proof that the "treatment" is working.

I am not making this up, in fact, here is an article you should read: http://scienceblogs.com/insolence/2012/05/25/selling-bleach-as-a-cure-for-autism/

(That, by the way, is a blog you should be reading if you are looking for real science, and need help sorting through all of the crap that is out there.)

I don't know about you, but somehow pumping a child full of industrial bleach multiple times a day seems ... contrary (choosing my words carefully) to the message that they are trying to promote. But these are the people that also still champion chelation (McCarthy's treatment of choice), which has not only been proven to be ineffective (with actual science) but is also outright dangerous.

At least they're consistent.

They are also consistent in their message of hopelessness and fear. They disguise it as "hope", but it's all designed to make you believe that there could be nothing worse than your child being autistic and so you should do 846 things to "fix" your child, and hey look... there are ads all over our site for all sorts of things you should spend your money on to get going on that right now!"

Handy.

And if you don't think they are truly fear mongering? Here is a quote from the associate director of Autism One:

"It’s not like it’s seen on TV,” said Laura Rowley, AutismOne’s associate director, who continued, “Autism is screams of agony in the middle of the night, seizures during the day, endless fear, and walking a tightrope that puts parents at odds with a dysfunctional school system, a public health system in denial, and doctors who would further harm their children." 

Wow.

Well, I'll tell you this: that is not what autism is. That is the perception of someone who chooses to believe that their child is "damaged" or "broken" and must therefore be fixed because this is not the way THEY want their child to be, and they find it easier to blame everyone and everything and be angry all the time.

It's the prevalence of messages like that one, promoted not just by the Cult of McCarthy and friends, but Autism Speaks as well, that have an enormous impact on all of us. Society is becoming "aware" of autism alright, but not in a good way, not when it's presented as something to be feared by parents, and that needs to be prevented at all costs and/or cured. I know a lot of autistic people that would and do, disagree with that message. How am I supposed to expect the public to be understanding and accepting of Toad when they probably just look at him and think, Oh God, he's autistic, how AWFUL! Why haven't you done x,y, z to cure him yet?!

Because that is the message being sent by these groups. That, is their idea of "awareness".

All you have to do is read my last post to see where this has taken us.


Toadie is who he is. Is he who I expected? No. But he is who I have and whom I love so very much, as he is. Are there things about his being autistic that aren't awesome? You betcha. But, I am not going to spend all my time and energy hating and blaming and pouring who knows what in him/on him, forcing treatments that only make things worse and him miserable, and in the process make him and everyone else think he's less of a person, less worthy of being accepted, because he is "damaged" and we must "fix" him.

To me that's wrong.

Zach has asked me before if tomorrow there was a magic pill that we could give Toad that would take the autism away completely, with no side effects, would I give it to him? Zach's answer is no, he wouldn't. And he's very quick to tell you this. My answer doesn't come quite as fast, but, ultimately it's the same. Surprised? Toadie would not be TOADIE, if the autism were suddenly gone. He just wouldn't. I would miss the things that I love about him too much, and he is who he is because he's autistic. It's that simple. Would my life be less complicated if he weren't? Again, absolutely. But as I have said before, I'm his mother, and this is my path. I want Toadie to be happy and safe and this is what I strive for. As long as he is, then I am doing my job and that's all I need for him. I don't need him to be someone else, or someone else's idea of who he "should" be.


 

 

 

 

 

Well, hello there, my Toadie :)

 

 

 

 

 

 

 

 

 

This modern-day McCarthyism is dangerous and destructive. It's dangerous to everyone because it's affecting public health. It's destructive because it sends the wrong message about autism and those who are autistic.

Be aware. But be aware that the Playmate and Autism One/Generation Rescue are nothing but a cult. There is good information out there - but you're not going to get it from them.

A Time Not To Kill

First, a note: A big shout-out to those who have continued to check-in despite my abrupt and prolonged absence from the blog, thank-you, and I hope I didn't lose too many of you. If you gave up (and I don't blame you if you did, since I almost did myself...), I hope this finds you again. I won't bore you all with details - see, right off the bat I'm totally lying because I will, just, not yet - so let's get back to business, shall we? WE SHALL.

 

There has been a lot to write about the last few months. So much that I almost couldn't sort through it all well enough to write with any clarity. But there was one thing. One topic that kept popping up on other blogs, on Facebook, the internet in general... this alarming black spot across an otherwise vibrant autism collective.

The obvious disdain and often blatant dislike of parents, coming from autistics, was a real shock at first. It was difficult to deal with but also very difficult to understand, at least from my own experiences, and I found myself simply wanting, no, needing, to be heard. But there was no discussion, only walls thrown up, derailments, no willingness, at all it seemed, to believe that we're not all... awful.

And it actually made me angry, at first. How dare they? How DARE they judge like that? Without even knowing us. Without even affording us enough respect to hear what we have to say/offer. How can you talk about acceptance but not be accepting yourselves? I didn't understand. It just seemed too hypocritical and close-minded and wasn't something I felt I could put any more energy in to.

But over the last few months, that awful dark spot of division and mistrust defined itself for me, all the way down to its terrifying roots.

While I may not have been writing, I did not actually disappear. I've been here. I've been reading, keeping up with everything as always, just... quietly. Reading. Reading posts by and about people I knew had no respect for me or what I might write. Reading all of the comments, even though I usually make a point not to. Reading posts by people whom I admire and respect very much, both autistics and parents alike. I started to realize that this rift goes very deep and more importantly, that it is not what it appears to be on its surface.

At first it looked like a power struggle. A simple case of who has or should have, the most influence in the world of advocacy. And that was/is not something I have any interest in getting caught up in. No one wins those and too many get hurt along the way. But even though there are some real elements of that here and there, I believe the true heart of the matter is something else entirely.

It's mistrust. It's resentment - stemming from too many terrible experiences with misguided, ignorant, or bad people. But most insidiously, it's fear.

Fear of being humiliated. Fear of being mistreated, abused, bullied, and hurt. Fear, of being killed.

Yes, being killed.

Think I'm exaggerating? Think again. And not just by poorly screened/supervised/educated care-givers in money-starved or badly managed facilities, though the very harsh reality is that that happens all the time: http://www.news10.net/news/watchdogs/180510/449/Basic-police-work-ignored-in-autistic-patients-suspicious-death

http://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html?pagewanted=all

http://www.dailymail.co.uk/news/article-1364182/Jail-health-aide-left-autistic-man-die-boiling-hot-van-cell-phone-hours.html

And those are just a few of the higher profile cases. If you search, you will unfortunately find much, much more.

But no, it's not just strangers.

It's also parents. Parents who kill their own children...

http://en.wikipedia.org/wiki/Karen_McCarron

http://www.nydailynews.com/news/crime/millionaire-mom-gigi-jordan-accused-killing-son-denied-bail-judge-house-arrest-article-1.168884

http://www.dailymail.co.uk/news/article-1385103/Yvonne-Freaney-killed-autistic-son-Glenn-facing-lifetime-care.html

http://www.10news.com/news/30820120/detail.html

http://www.mercurynews.com/breaking-news/ci_20120852

http://www.aolnews.com/2010/07/21/mom-told-911-dispatcher-she-killed-2-children/

... because they were autistic. As if somehow that could be an excuse. And this, sickeningly, is just the tip of the iceberg, if what I've linked here hasn't already made your blood run cold, go ahead and search it - you'll find a lot.

 

I don't know if it's because I have been relatively isolated for a long time on our funky little Josh-Planet, or perhaps that I chose not to pay attention to this utterly horrifying trend, but trend it is and I have really only just come to realize that over the last few months.

No bloody wonder many autistics don't trust us and would prefer to keep parents at distance.

Of course I'm not saying that all parents of autistic children are capable of murder, obviously they are not. But clearly a frightening number of them are. And that would scare the hell out of me too.

How do you do that? How do you kill your own child, disabled or not? You will not find me on the sympathy band-wagon for these parents.

I can understand how they get there, I can. I understand difficult. I understand frustrating. I understand heartbreak, despair, fear, anger, exhaustion, isolation, anxiety, desperation and yes, even hopelessness. I can understand all of it because I've lived it. I've been living it for almost 14 years now. But I also understand love. And unbridled joy. And happiness, tenderness, hilarity, amazement, wonder, curiosity, and did I mention LOVE? You know, that thing you feel for your children that is without limit? Without condition? That is a part of your soul from the moment you become a parent? THAT? Yeah, that does not come with an asterisk, just so you know. You don't get to say "I'm going to murder you, my child, because you are autistic and life is hard". You don't even get to spew ridiculous statements (that is seriously the worst thing I've ever read that wasn't on an anti-vax site or penned by Jenny McCarthy) like the bitter pill that is Hannah Brown... she is "surprised" that she doesn't love her autistic son LESS than if he weren't autistic? What? Because she somehow just expected that he would be less deserving, less her child, less her SON, just because he's autistic??? How did this woman get any kind of voice on the matter? It's baffling.

It's been a long road with Toad. If you've read the early blog posts and were here in the Fall of 2010 when things were really tough with his aggression, you'll know. And there have been some very dark moments. So I do understand how some of these mothers may have felt they had reached such an awful, hopeless point. It's the step beyond that I cannot find any empathy for. I know that all of our kids are different and that I can't truly know what it was like for these parents who have done the unthinkable. But I DO know what my job is - I need to keep my children safe... I need to protect them from harm, even if that means protecting them from myself. If I am in such a bad place that I think I might hurt my child, then I will figure out a way to make sure that doesn't happen. I will do everything within my power to keep my kids alive because that's my fucking job. Period. Pretty sure right up there at the top of The Parent Rule Book is "don't kill your kids".  It's right before "eating them is also frowned upon" but after "love them within an inch of your life". 

Through it all, right from the very beginning, I love my son. I love him as much as I love his brother, I love him so much my heart might explode. I felt that way before he was diagnosed, and after. Nothing changed. Why should it have? He's my son. I didn't mourn, as some people talk about when their children are diagnosed, I never have. Why would I mourn, I never lost anything? I HAVE my Toadie. I knew from fairly early on, that Toad was just... Toad. This is who he is, there wasn't going to be any "recovery" or "cure", just my sweet, french-fry-eating, Blue's Clues loving, Ugg-wearing Toad. And that was cool because this is his path, and mine to share with him, that's just how our story is going to go. I decided many, many years back, that the ONLY thing I wanted/needed for him was happiness. That's it. Nothing. Else. Matters.

I think killing him would probably be problematic in that respect.

Toad can love. He can be scared. He can be sad, frustrated, amused, angry, nervous, silly, or pensive. He is a person. A human being with feelings and emotions. He deserves to be treated as a human being by the rest of the world. He is not a "burden". There have been some times when I wasn't sure I could do this, when I didn't think I had what it took to be his mother. But then I'd look at him sleeping, so angelic and peaceful, the demons that were tormenting him while awake mercifully taking some time out - and I knew I had to keep going, I had to help my Toadie find his happiness again because I accepted that responsibility when I helped create him. You can't just turn your back on that.

And murder, is not the answer. Ever. And it's not something to be excused or sugar-coated because the victims are disabled. If anything, that makes it worse.

 

There is always help. The world is chalk full of people, reach out if you need to. I'd be willing to bet that even a total stranger would be happy you did rather than see you and/or your child dead on the 6 o'clock news.

 

 

(Re-posting permissible)