Bond for Life.

I’ve been thinking about throwing in the towel on this whole autism thing.  You know, trying to educate the whole world how to treat or not treat my son is exhausting and scary.  And you know what?  My child, despite his differences, is really not all that different.  Then again, he will never be the same as someone else with or without autism.

If you’ve been reading here any amount of time, you know that I want to make people aware of what autism looks like in my house.  To educate about what kinds of things are part of our daily life, what to look for, what to expect, the delays, the hard, funny, easy, heart warming and frustrating parts of it all that make up our life. To bring about understanding.

Autism, as it is defined in my son’s world, is different than autism anywhere else.  My son loves to play with cars.  He may not narrate navigating his remote control cars through the house, but he can race and turn those cars better than I could ever hope to.  He loves to play Wii games.  He might start over when he feels like the game is not quite right, but he can still unlock and level up before I even understand what he’s doing.

He likes to swing, climb and bounce like any other kid his age.  He loves french fries, ice cream and chocolate cupcakes.  He loves trendy clothes and hanging with a friend.

He will climb on his mama’s lap and ask me to read him a story.  He wants to go to Disneyland and to be like his Daddy.  He plays drums like a rock star.  He dances.  He sings.  He plays with bath toys.  He is smart and, like most kids, he has his talents and his weaknesses.  No different from his peers.

But there are major differences at the same time.  His mannerisms, his time to respond when addressed, his fears, his ability to perceive, to smell, to judge distance are different.  But all children have differences, some are afraid of monsters or the dark.  Everyone has their differences.

My son speaks differently and sparingly.  But because of that, when he does speak, people listen.  And like anything that is rare, his words are valued and beautiful.

So, yes, this autism thing, makes my son different.  Even in difference, there is still a common denominator.  Funny, that in everything, everywhere, including autism, one common denominator will always be that we’re different.

Differences in our humanity can be beautiful when we look with love.  I love my son with every ounce of my being.  But in the world – out there – there is a desensitized majority that don’t understand my son is different yet the same.  They don’t understand the enormous value of my son’s life.  That there is nothing greater than that life to me.

They won’t understand because they can’t get past the word – autism.

There is a 23 old autistic young man who needs a heart transplant right now.  One I first heard about from my friend at Unlocking Doors, in this post.  I am appalled and horrified that because this young man would require assistance to maintain many drugs required for transplants, or will have trouble understanding his healing process and what is required of him, he is being denied the right to a heart transplant.

To a desensitized, unfeeling, removed part of the world – out there – his life is discardable.  

You can help change that by signing a petition when you click here.

There are a lot of people online, who talk about autism, who want to bond, share, support, love, give and nurture.  To feel part of a group.  Because, no matter who we are, we also have that commonality, to validate how we feel through others.  The vast majority of us, have the desire to be “good”, to “do” good and to help each other.

Why, then does it, so often, go wrong?

Maybe, in trying to bond and be helpful, we forget individuality. Trying to unite us all under one banner to spread “good”, we sometimes, assume similarities that don’t fit.

Oops.  Forgetting our differences takes us back to misunderstanding and that can make people mad.  And when people get mad, they say stuff.  Ego may take control in which case, a tenuous connection that united, goes up in a poof of smoke.  It’s erased.  Gone.

And isn’t that a shame.

We may not always agree.  We may make mistakes that cause us to detach from others.  But on this issue of life and death?  No amount of seemingly plausible reasoning can make this anything but wrong.  Letting a young man die rather than give him a new heart because he requires help to take medications, to understand how to help himself heal after surgery, is unacceptable.

Putting aside petty differences, disagreements, misunderstandings our community can bond to help save a life.

Is there a better reason?

Let’s do it together.  As one.  Sign to save this young man’s life.  Bonus!  We recognize our strength when we unite – no strife – just a selfless act.   And, just maybe, we can all find some peace.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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11 Responses to Bond for Life.

  1. I saw the story a few days ago and signed the petition. That something like Paul Corby’s story could happen in a so-called “modern society” is nothing short of abhorrent. We need to do better.

  2. these are the stories that just make me want to take my kid and find a deserted island to hide away on. scary. thank you for the link the other day, I reread it, sounds like exactly what I am looking for, now to figure out how to convince the school to pay…..

    • solodialogue says:

      I know. I feel like hiding away too. I hope you will or have already signed the petition!

      You are most welcome for the link! I know you can convince them to pay. Remember, always start with more than you really want. Tie it in to the eval, but make it way more expensive if you can with some thread of reasonableness. Charlie will need this support and this etc. although a neuro psych eval may not show this one but without that then……. and you can “bargain down” to what you really want. Just as one mom to another.

  3. Thanks for sharing this, it wasn’t on my radar these past few weeks. I signed and shared. Because of the things people say or misunderstand about autism is why we have these problems. I makes me aware of how much I “out” my kids in the world. Sometimes people notice, sometimes they don’t. I can relate to the feelings of outrunning the storm. I kind of want to take my family away and shelter them from this nonsense. Great post. You are a very gifted writer.

    • solodialogue says:

      Thank you for signing and sharing! And for your kind words! Misunderstanding combines with a society that is desensitized to suffering and yields patently absurd results like this. Bonding can repair. I certainly hope that happens here.

  4. Mary says:

    How awful. Signed and shared. Our kids don’t understand a lot of the medical procedures we put them through. Does that mean they shouldn’t have them?

    My only question would be consent. If he doesn’t understand, he can’t consent to the surgery. Does someone (his mother?) have power of attorney or whatever the legal term is to make these decisions for him?

    Side note: I have recently been informed that Freckles’ sleep study will last 3 days/nights IN a hospital. How exactly do they plan to keep her there for 3 days? Has anyone heard of a sleep study like this? I am hoping the nurse who told me this was confused. Yes, I had to call for the results of the 20-minute EEG because no one bothered to call me. As expected, it was negative. You can’t tell what’s happening in her sleep during a 20-minute test in the morning. Sheesh.

  5. Beautifully said, Karen. That was pretty much how I was feeling when I first read the article. All I could think about was, “What if that was on of my children?” It was important to me to sign the petition and add my voice to the many others and say that this kind of discrimination was unacceptable. I also wonder where it would stop. Do we not treat people on the spectrum for gallbladder issues, hernia operations, or cancer? That would be completely inhumane.

  6. vaughanmom says:

    When I first heard of this young man I couldn’t allow myself to go there and believe that he was REALLY being denied a heart because of Autism. There just had to be more to the story. When I investigated further and found out there wasn’t I became sickened and frightened. What if that was my little girl? What if someone told me her Autism, Epilepsy, etc. made her unworthy? Appalling!!! As if we dont have enough to deal with as special needs parents?!? We should never have to justify to anyone the value of our childrens lives. It’s that simple. Wonderful post!

  7. beautiful post…you speak so well from the heart. I signed and put on my facebook support group wall…..HUGS to you fantastic mother! 🙂 Sam

  8. eof737 says:

    Thank you Karen. Your effort is an education for many like me who don’t know. TY! 🙂

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