Why I am reconsidering (again) organ donation

Last year I wrote about the personal reasons why I decided to become an organ donor. Today, I am reconsidering that decision. 

Some months back I wrote an article about a little girl who was denied a kidney transplant because she was, quote "Mentally Retarded" (a word that modern medicine doesn't even use anymore, if that shows you how archaic the system that denied her is.) In fact, the internet was on fire with the story. Eventually and after much petitioning and the hospital enduring a firestorm of pubic opinion, she was approved to have the transplant with her mother donating. I was, at the time, appalled to learn that denying people on the basis of their cognitive abilities was not an aberration but routine. 

I understand that there's a lot of prejudice in the word against those with special needs, and it's been part of my ongoing mission in life to fight it, to educate. But even now it comes as a gross surprise that this littleness of thought isn't reserved for the uneducated, ignorant masses. Nope, apparently it's deeply embedded like a cancer in our school system, in our government, in the doctors who have the power of deciding who is going to live and die. And they have decided

that children like 

mine

are not worthy

to survive. 

Here it is. A 23 year old man with high functioning Autism (PDD-NOS to be specific,) has been denied a heart transplant on the basis of his having Autism. And now any single one of us who have children with a special need can't do the all too human mental duck and cover. Because while the first story appalled and enraged me, and while I did my small part to help her case, I don't have a child with an Intellectual Disability. I have a child with high functioning Autism. It is the second story, the latest eye-opener of what has apparently been a prevalent prejudice, that prompts me to look at my radiant son - my funny, witty, intelligent, amazing little ball of sunshine - and realize with a nauseous horror that a bunch of cobweb-ridden relics in the medical field *would not consider him worth saving.* 

I can't even get my head around that, much less my heart. 

You have it all backwards. He is not less. He is MORE. 

I have to admit that since Jaden's diagnosis we've gone in and we've gone in deep. My friends, my community, is the Autism community. The children I know are by majority special needs. My eyes see the world with a different lens. Typical children puzzle me. They are the ones who seem to be distant, aloof, anti-social. I'm sure they are just "normal", but after being surrounded by children who don't know a social game from a game of chess, it's very different. SN children don't play NT games, they don't develop malice, they don't scheme. They love different but they love big. At the age that NTs are learning to reserve and hide a piece of themselves for self-preservation, SNs have all the emotional openness of a one year old. So, we say they're different. But less?? 

Back to the story and the comments section, which is often educating if you like to be sickened by humanity. Many comments from parents who say that their kids were also denied transplants for the same reason. One that says they were lucky; her child had a heart transplant as an infant. She was later told if they had known his dx they wouldn't have. 

One quote: "It's not a matter of placing lower value on his life. It's about honoring the donor." 

That's when I remembered my former decision to become a donor. Had I considered what kind of person I might be saving with my decision? No, I never really thought about it beyond "someone who needs it." What if the donor was able to choose? Could we say we don't want someone of a certain race or religion, or sexual orientation to get our organs? Are we allowed that littleness of spirit? Maybe as a donor I'd much rather be saving the life of a person with special needs than a 70 year old man who drank himself into oblivion for 50 years. Maybe I'd like to say that I wouldn't want it to go to someone in prison, or convicted of certain felonies. Or can I specify no NTs? 

No, I can't do that. They check to see if someone is a donor, then they check who's next on the list that matches. 

I can say that if that list is designed to exclude MY OWN SON, they can go *(^&%^ $@^*&@$#. 

And that is all. 

"At first he was OK with it because he thought, 'At least I don't have to go through that surgery,' " his mother said, "and then he thought, 'Why not? Why don't they like me?'  

"After Karen Corby said she was willing to give permission for Penn to discuss her son's case, health system spokeswoman Susan Phillips said that "the physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment."

--Should Autism block a man from getting a heart transplant?  

Please sign Karen Corby's petition 'Help my Autistic son get a life-saving heart transplant" 

Introducing Chase & Pip!

I added some new tabs to play with so must take a moment to introduce them to you!

First, Chase & Pip star in my first (almost) published children's book, "I Go Exploring".

The page is a little bit under construction. Bad form, I know. My apologies.

Second I'm please to introduce to you Wildflowers for Her!
We begin with a collection of my best poetry, and it's really pretty good. :)
As many writers know, poetry and short stories are rarely money makers, especially while you're still alive. I could have waited until I'm dead but I'm a bit too impatient for that. So instead of allowing them to continue to gather dust and cobwebs I've decided to share them. Click on the link above and follow Wildflowers for Her, or join the email list, to receive updates when I post the short stories. IMO it's worth a look!
Maybe I'll post some inspirational posts "for her" as well. What? I can be inspirational. Stop laughing. 


;) 


Thanks for stopping by! <3 <3 <3 

Delusions of grandeur and paved roads

When Jaden was discharged from all of his therapies a few months ago, I had some delusions. I have to face it now. There is probably in every mother of a child with Autism a buried fantasy of *when it all goes away* - the war we fight for our children's future - the point when we can breathe a sigh of relief that he/she can talk/walk/read/write/take care of their own needs/has stopped violently raging and won't end up in jail/fill in the many blanks here, and we can skip through life blissfully like, well like a typical family. Where the mountains end and there is a road under our feet. Paved at that. 

OK. For a second I thought I was there. On that road. Before that moment I wasn't even aware that this is what I've been waiting, or at least hoping for. Like I said, buried. Under all that day to day junk that blocks our visions of tomorrow. 

When we learned that Jaden had special needs I threw myself into a year and a half of research that would rival a PHD hopeful. 10-12 hour days were not uncommon. The day I realized my son has Autism I stopped sleeping, almost completely. When my research led to a well-formulated plan, and when I was able to let the experts at The Brown Center take over the heavy work, I had reached critical burnout. The research efforts dwindled to a trickle. I knew what I needed to know. Not everything, but what I needed for Jaden. I still observed their every move through the monitors and participated in the classroom occasionally, and went to their parent training. I did the stuff at home that I needed to. My goals were immediate; Learn to talk, learn to understand speech. Hold a pencil and learn to draw and write. Hold a utensil and self-feed. EAT. Walk without falling over his feet (ok this is still an issue.) Self-care age appropriately. In other words, get him to the level of his typical peers developmentally. 

It was like I was trudging along the line of our goals with my head down until suddenly I was told I'd arrived. What? Arrived where? "Jaden tested in the 'normal' range for everything." He's done. Hallelujah! 

That's when I became delusional. I was looking at "developmentally appropriate" and thinking hell, we're on that paved road now. 

     underwater photography

I'm going to make a confession. I was wanting to leave the "A" word behind. I didn't want to think about it anymore. Being forced into this world was like learning to drown. Eventually I had forgotten all about that "other world" I used to live in before I was forced kicking and screaming to this realm. But now - now I can leave, right? We can go home and pretend the last few years never happened. Oh yeah, I wanted that. To all my fellow Autism parents; I wanted to leave you. 

My delusion was short-lived. Oh I knew he still "had Autism." (Not to get into the great debate, but) I don't really think Autism is something you can, or maybe even should, cure. The brain can be trained to learn new ways to cope with life, but it will never be the same as being born typical. It's just different. Even then, I entertained the notion that I could be wrong. "He's doing so well, isn't he?" 

My dear self: developmentally appropriate does not mean not Autistic. 

We have a lot of recovery. We still have Autism. It insisted on being near his classmates in camp then kept him isolated from connecting with them. It tried to escape the house several times, climbing on chairs and studying the extra door locks in an attempt to circumvent them. It melted down at the mention of door alarms (because that's now next.) It screamed at me, hit me, and bit and tore at my clothes with it's teeth in the convenience store. It raged at me for days on and off between sweet and loving. It wrapped it's arms around my neck then shoved it's thumb into my windpipe in anger. I looked at him and said "I don't get it. You're SO SMART. Why can't you understand how inappropriate this is? Why can't you see that it will get you the opposite of what you're screaming for?" Why doesn't he understand why he can't wander off through the neighborhood or anywhere he wants to by himself? Why can't he remember to use his words? Why isn't he trying to negotiate with me, like my little sister used to with my dad? Why can't he see that I'm a sucker for him and know if he played his very good cards right his life would be - easy? 

Because he has Autism. It's not over, it's just different. I prepared, I worked, and now we've gone on to phase two. I was told that we would go on to meet new challenges but I didn't hear it. He can use a pencil and have a conversation with me now, damn it. So we have the older, brilliant Autistic child who has been rediagnosed with Aspergers, and I haven't even really researched this part yet.   

Paved roads are overrated anyway, right?

Graduation Day

My very hard working little Jade has graduated from all of his therapies. May 3rd was his last day at BCA! :) 

First day of school

Typical people, it’s time to start pulling your weight

Years of therapy - speech therapy, occupational therapy, behavior therapy, and social skills. My 5 year old has worked his butt off to learn how to understand and relate to the typical world. What a smile means, what a frown means, what sarcasm is and why people don’t say what they mean and mean what they say. Don’t hug, don’t touch, don’t stand too close because it makes the typicals uncomfortable. We still haven’t got that down. Typical kids jump away like they’ve never had affection at home. Sometimes I feel sorry for them.

He. Tries. SO. Hard. He doesn’t get it right. The kids are mean. He wants to give up. He echoes lines from his superhero cartoons “That kid is NOT my bro.” He sobs in my lap for a half hour because I won’t let him quit soccer this time.

And I think, it’s not fair really. He was born behind the curve in understanding an illogical world. Meanwhile those for whom learning comes easy breeze through with a scorn and a laugh, some flippant remarks, adults who think we all “take it too seriously” when every day that we go out in public is a war. A war to keep my child from sinking into self-hatred and killing himself. Too dramatic again? Uh oh, better run back to your pintrest and desperate housewives, because today I’m keeping it real.

See, words and attitudes do hurt, even for a child who might not have the finest grasp on words. What he understands less is why he’s an automatic outcast. He takes it out on himself, not knowing how he’s messing it up, but knowing that he is.

My five year old said he hates himself and wants to kill himself. Several times.

At first I reacted by saying I hate Autism. But I don’t. I hate typical. Typical, self-important, entitled yahoos to whom life hands apples and they make quips about what to do when you get lemons.

The week I was dealing with a suicidal five year old, rejection on the playground, new soccer kids in new soccer team who scorn and push and play better, meltdowns in public and sobfests in my arms; that same week I am confronted by an internet post that mocked parents who have screaming kids in target. Bring on the inevitable tidal wave of public opinion and vicious posts about bad parents and rotten kids. I wasn’t mad, yet. I know people are ignorant (though it’s 2012 and the information age, for God’s sake.) I'm always more hurt for Jaden than offended for me, because people think of him that way. Kids do pick up on those attitudes, yes even kids with disabilities. I insert a small PSA about special needs kids and thinking before you bitch, and get the slap down because life is rainbows and I should learn to laugh about it more. “We all have problems.” Yep, I can remember the time I had to choose which coffee to make in the morning and trying to make it home from work in time to watch my favorite show. God, life was rough.

I do laugh at myself, my problems, my issues and my screw-ups. I make jokes about it all the time. Humor and finding the joy in my life, or at least the sarcasm, is part of what holds me together. My husband left me? I have jokes for that. Don’t have a job because I’m caring for my son? Sure, poor humor is rich. You put down my son (or incite others to do the same)? I will tear your fucking eyes out. Fair enough? Some things. Aren’t. Funny.

Jaden is about to complete his 3^rd year of therapy. All that to relate to the typical world, and because that’s what he wants to do, not because I give a damn about him looking like a “real boy.” And he’s doing amazing, just absolutely amazing and I’m proud of him and the hard work he’s done. He’s doing great until he’s around typical kids who see different a mile away no matter how much therapy it’s had.

How much time have you invested in your kids, or even yourself, to be able to relate to children/people/families with special needs? If a child with special needs is behind already, and your honor roll kids are so smart, why is it so hard for them to learn how to meet a child with Autism half way instead of making that kid do all the work to get up to their standards? Instead of handing out donations at the supermarket and thinking you did something special, why don’t you spend some time teaching your kids what special really is, why different doesn’t mean bad, and how to be a friend?  We’ve invested 3 years and counting. You can match that with at least a few days.

A child having a meltdown at the supermarket doesn’t offend me, by the way, but a mean-spirited child sure does. I blame the parents.

The Nature of Boys - vs Nurture

Before I had kids I thought I knew so much. I believed in nurture’s superiority to nature. I thought that boys must gravitate towards “boy things” more because they were told that’s what boys like. As any mother with sons could have told me - if they could have gotten the words out through their laughter - that is just not the way it is. I admit the deeply embedded “I love cars” gene has my scientific mind baffled, considering there were no cars up until 150ish years ago. (I’m not looking up when cars were actually invented, as a woman I really don’t care.)

It’s apparent that other things are also buried deep within the male DNA. When I had to explain to Jaden some of the subtle difference between our *ahem* parts, and it finally dawned on him that mommy didn’t have an “outie,” his reply was “Oh… I’m sorry Mommy!”

At four years old he was already convinced of the superiority of a peepee.

My son is surrounded by estrogen. All of his teachers/therapists are female, the director at his school is a woman, and I’m his primary caregiver. Meaning I’m the boss. Jaden’s dad, while having some of the all-to-normal subtle forms of the belief in male superiority, isn’t one to spout off a chauvinistic remark. So imagine our surprise when during a casual conversation about office politics, Jaden cried out “Dad, your boss is a woman?! You can’t have a woman for a boss!”

I almost, at that point, gave up any hope for the future of the race.

He is, however, very sweet and considerate. He insists on buying me flowers (with my money) whenever we go to the grocery store, is quick to say “Wow, you look beautiful Mommy!” when I come downstairs dressed up, and tells me often that he loves me and what a great mom I am. And I don’t even have to pay him to do it.

So in spite of his little boys-are-better quirks, and the body-gas humor, superhero and supervillian obsessions, and his having to shoot or beat up every bad guy in town, I do think he’ll turn out to be a good and considerate man. With nurture.

Every book is a window

Last night Jaden and I finished reading The Lion, The Witch and The Wardrobe. This wasn’t the first “big book” I’ve read to him but it's the first that we’ve finished. The others were just too far beyond his comprehension, but I thought that The Chronicles of Narnia might be just about right, and they are. He still doesn’t understand even half of what I’m reading, and because of that I’m even more proud of his ability to stick it out and listen anyway. I go back and summarize for him often and we ask each other questions about what we’ve read.

Not to brag (OK maybe a little?) but I’m proud of myself too. It’s nice to see the end results of years of struggle play out well. Jaden is – to put it mildly – not a very attentive child. I first started reading to him when he was maybe 6 months old. You know those little one minute, 3 word books with the little finger puppet in them to hold interest? Yeah I love those. Even then I had to hold Mr. Squirmy down and force him to pay attention, and that went on for a while. This was not something done lightly but a very weighed decision. Yes I’m an attachment parent and part of the “free the children” movement (not really I made that up,) and don’t believe in pushing a child too hard too fast, but maybe even then I sensed this was not some regular phase he’d grow out of but something he had to be taught. I was most successful by reading to him while I was nursing, his favorite thing, and I had my captive audience.

Fast forward years later and I have a child who listens to a story even when he doesn’t understand it. Who begs me to read to him on the nights when I waver and say we stayed up too late and maybe we should skip it. A few weeks ago as I turned off the light he said “Thank you, Mommy.”

“For what?”

“For reading to me,” he said, though I do it every night. And I tucked that moment into my box of treasures.

Reading has been a foundational piece of my life, so I was determined from the start that “this child will be a reader!” How important it was I didn’t even know at the time, before we understood that language in any form was one of his biggest challenges. How much more so essential it is that he will want to read, to listen, to understand. If the love for it is there, he will overcome his obstacles to accomplish it. Because he’s Jaden, and he’s strong-willed and determined to do whatever he sets his mind to do.

So to me, last night was a coup, a shining star in the sky that is opening for Jaden. When we were done I asked “Why do you think the Professor believed their story and didn’t think they were crazy?”

“I don’t know?” he said wondering.

“I think it’s because he’s been to Narnia too.” I looked at Jaden. “Actually I know that’s why, because there’s a book about that too.”

“There’s another book?” he asked, his eyes getting big.

“Yep. There are several books about Narnia. Would you like us to read them all?”

“Yes!” he exclaimed with a smile.

And his world opened up that much more.

Every book is a window

Every word a step

Into unknown territories

And unchartered depths

Every idea, whether

Wrong or right

Opens rooms for thoughts

To shine lights in the night

Education’s a dry thing

But learning abounding

When a child realizes

The world is astounding 

A life may be poor

Even if rich or grand

Without adventures to read

Of some distant land

So you take your gold

And I’ll take my mysteries

Shakespeare and Dickinson

Roman Empire histories

I’ll skip all the drama

and allegory;

The world is too small

Without a good story

Copywrited (In other words, please don't reprint without permission. Thanks!)

A beautiful wedding and tough conversations

My favorite time of day is Jaden’s bedtime. Not because he’s going to be asleep (though I won’t lie, sometimes that’s nice) but because that’s our time. Quite often we read for a while, on rare occasions we hook up the dvd player and watch a few minutes of a movie, and that’s our time to talk about anything that’s on his mind.

One of Jaden’s happiest breakthroughs is that a few months ago we began to have actual conversations. I’ve waited so long to hear what’s going through his head. He started really talking close to a year ago, right after we switched his speech therapy to Vanderbilt Bill Wilkerson. Because of this I’m in love with his speech therapist and think of her as part of our family. But real back and forth conversation took more time and work from all of his team of superheroes, as his receptive language is on a lower level than his expressive language. He struggles to understand us. The first time he told me a sentence in answer to “what happened today?” I had to act casual and turn so he wouldn’t see me tearing up. Way, way bigger than when he took his first steps.

So as soon as he was able, I used bedtime as a safe time to practice and talk to me about whatever was on his mind. It’s easier then, when his thoughts and eyes and body aren’t bouncing all over the room.

Tonight it was sad. I should have seen it coming maybe, when he asked me in the car “Why do people die?” I talked to him a little about it, trying to walk the line between being honest and not scaring him, while we put away groceries. I could tell he was done when he changed the subject himself and breathed a sigh of relief. I hope the birds and bees question waits for a while longer.

Laying in bed though the subject turned to two things I can’t fix for him; bad dreams then  the subject of our divorce. With tears he begged me again to “be married to daddy again,” with “’What a beautiful wedding,’ do you remember that in the song? ” he asked as he sang the lines from Panic! in the Disco’s  I write sins not tragedies. “’What a beautiful wedding,’ be like that. With the cake, and the flowers, and be married.”

I held him while he cried about it, I held him while he begged, I held him while he asked if daddy was going to marry someone else, and I held him while I told him again there wasn’t anything more I could do about any of it.

On second thought can we go back to why people die and the birds and the bees?

(I lol at how sweet that Jaden thinks the video is about a beautiful wedding…
Yes I gave it away - I’m a bad mom. We love our music!)