WEIRDNESS and CONSENT

A few days ago, My six year old son came to me and told me that several kids in his class said that he was "bossy and weird," that they didn't like him, didn't want to be his friends and that he should not try to play with them anymore.

My first thought was, "WHAT THE ****?! He's SIX!!" The 2nd was, "Why? Aiden is a handsome, smart, vibrant little boy who only ever wants to make friends!" The third was, "What the HELL do I do about this to make him feel better? Do I call the school?! Do I get involved? Do I stay out of it? Do I trust HIM to handle it?! WHAT DO I DO?!"

I had no idea that this ridiculousness started so early in life. I should have, as I experienced bullying early in life myself, and knowing my son to be much like his Mom, he CAN be a bit bossy, hyper, and maybe a bit... eccentric. It's a magnet for bullies. I prayed the uncomfortable rite of passage would PASS him by... Sadly, that is not the case here.

I have already faced some intolerance with my younger son. Ryan has been targeted by children AND adults for his behavior related to Autism Spectrum Disorder. He's been bullied before, and until recently was blissfully unaware, or unfazed by it. People do not understand that "high-functioning" Autism, is STILL Autism. Often, people simply see a bratty, unruly, disrespectful kid, instead of what is truly going on, and as loving and gentle a soul as he is, his behavior CAN BE confusing at times. Sometimes, in playgroups, etc, the children will laugh at him; the PARENTS, will shoot me concerned looks, and steer their children away... and it HURTS him! He doesn't understand why they "Can't" play with him! And it KILLS ME. However, I've had some time to mentally prepare myself, to steel my resolve that he will NEVER be made to feel bad about who he is, by any person, INCLUDING the one looking back at him in the mirror. SO FAR, I've been able to say to him, "You've done NOTHING wrong. They just don't get how awesome you are. They are missing out on you. You're not missing out on ANYTHING," and until now that has worked for him.

Hearing that Aiden was being bullied left me completely FLOORED. I never saw it coming and was stumped as to how to handle it. Aiden is extremely sensitive, a huge people pleaser and wants to be EVERYBODY'S best friend. He got that from me. However, He got a wonderful gift from his father, the Pragmatist... the gift of common sense.

It became clear, suddenly, how to handle the situation. The conversation continued like this:

Mom: (looking my son square in in eye) "Well Bubba? Are they right?"
A: "What?"
M: "They said you're weird. Are you weird?"
A: "I don't know. No. No, I'm not weird. What's 'weird' mean?"
M: It means, different from everyone else. Special. INTERESTING, Funky and cool."
A: "So, it's GOOD?"
M: "I think so, but that's just me. You have to decide that for yourself Buddy."
A: "Why would they call me that, if they don't want to be my friend?"
M: "Because they don't get it. They don't get you. You're too cool for them."
A: "Ooooh..."
M: "So, let me ask you again, Are you weird?"
A: "Yup!"
M: "And what do you think you should say if someone calls you weird?"
A: "Thank you?"
M: "Exactly."

We went on to discuss the BIG difference between being a leader, and being "bossy." Barking orders and not playing by the rules is being "bossy," is NOT ok, and if WAS acting that way, "knock it off." By contrast, a true leader is compassionate and adaptable. Leaders do not NEED to be followed, but WILL lead, as required. We gave Aiden examples of his own leadership qualities, like doing chores without being asked, helping Ryan with his reading or playing with Kay busy so that Mommy can make dinner. It is a wonderful quality that we are proud to see in him, every day.

Then came the hard part of the discussion... BULLIES. All people need to feel important, but that shutting another person out of a group, belittling or intimidating others to make oneself feel in control, important or special is VERY WRONG. No one should EVER feel pressured to act out of character. We told our son that if someone tries to shut him out, just say, "Ok, great. Whatever makes you happy," and move on. As long as he understands that there is nothing wrong with him, and knows and likes himself, he stays in control of who himself and his own life. In a nutshell, My husband and I told him the "Abridged" philosophy of Eleanor Roosevelt:

The story goes that Madame Roosevelt was questioned during a White House press conference about the "snub" of the Secretary of Labor at a recent event. Her response, according to the 1935 (AP) article was in classic Eleanor Roosevelt fashion:

“A snub” defined the first lady, “is the effort of a person who feels superior to make someone else feel inferior. To do so, he has to find someone who can be made to feel inferior.” She made clear she didn’t think the labor secretary fell within the category of the “snubable.” (1)

In terms that he would understand, we told him to remember that, "only YOU can decide who you are in your life. NO ONE gets that right but you. If someone doesn't want to play with you, that's ok. If they say, "I don't like you," reply with, "Congratulations," and walk away. If they keep bothering you, tell the teacher. If they don't stop, tell US. But always remember, the problem is THEIRS - NOT YOURS." I guess it DOES go back to that basic philosophy, whether you are five years old, six, 20 or 38. No one can MAKE you feel inferior without YOUR consent.

My son went to school the next day with his head held high (albeit 15 minutes late... not unusual) but self-assured. As he entered the building I said, as I do every day, "I love you! I'm very proud of you!" He smiled and said, "I know. I love you, Mom."

That is the best I can hope for; that he truly DOES believe in himself. For the time being, it's what I have to believe, and hope I'm ready for the next time...

Danielle Burnett


(1) Source: http://quoteinvestigator.com/2012/04/30/no-one-inferior/ (1935 March 26, News And Courier, Heart Balm Suit Ban Given Support By Mrs. Roosevelt, Page 7, Charleston, South Carolina. Google News Archive)

Simplicity of life, through the eyes of Genius

Benjamin Franklin, Isaac Newton, Beethoven, Socrates, Jesus of Nazareth, Mark Twain, Nietzche, Edgar Allen Poe, Charlie Chaplin, Galileo, Paul Gauguin, Gautama Buddha, Irving Berlin, John Nash, Pablo Picasso, Mohandes Ghandi, Janis Joplin, Hunter S. Thompson, Howard Hughes...

Pioneers, eccentrics, some insane, some simply ahead of their time, some outcast in many circles, some tortured souls, desperately wanting to be understood, while not even understanding themselves, and SOME that viewed their naysayers, with apathy, disdain, empathy, pity, and in some cases, gleeful amusement. But ALL, remained true to their unique form of expression, and we are better for it.

Naysayers be damned!

One such historical enigma that continues to hold my fascination is Albert Einstien. The following are excerpts OF an excerpt of a much larger essay, (everybody got that?!) that I found in a web exhibit at the American Institute of Physics: http://www.aip.org/history/einstein/essay.htm/

Don't ask how I landed on a website about Physics. I haven't the foggiest, personally.

Though the words in the following essay, are not mine, I have felt them, lived them, and though I of course, would never put my faux blonde brain on a tier anywhere close to his genius I feel as though I could have penned much of this myself.  I found several parts very inspirational and wanted to share a bit. I continue to be enamored with his ability very simply question, and often explain the complexities of life that seem to continue to plague the minds of so many looking for answers, myself included.

Plus, He was such a little cutie.

"How strange is the lot of us mortals! Each of us is here for a brief sojourn; for what purpose he knows not, though he sometimes thinks he senses it. But without deeper reflection one knows from daily life that one exists for other people -- first of all for those upon whose smiles and well-being our own happiness is wholly dependent, and then for the many, unknown to us, to whose destinies we are bound by the ties of sympathy. A hundred times every day I remind myself that my inner and outer life are based on the labors of other men, living and dead, and that I must exert myself in order to give in the same measure as I have received and am still receiving...

"I have never looked upon ease and happiness as ends in themselves -- this critical basis I call the ideal of a pigsty. The ideals that have lighted my way, and time after time have given me new courage to face life cheerfully, have been Kindness, Beauty, and Truth. Without the sense of kinship with men of like mind, without the occupation with the objective world, the eternally unattainable in the field of art and scientific endeavors, life would have seemed empty to me. The trite objects of human efforts -- possessions, outward success, luxury -- have always seemed to me contemptible.

"My passionate sense of social justice and social responsibility has always contrasted oddly with my pronounced lack of need for direct contact with other human beings and human communities. I am truly a 'lone traveler' and have never belonged to my country, my home, my friends, or even my immediate family, with my whole heart; in the face of all these ties, I have never lost a sense of distance and a need for solitude..."

"My political ideal is democracy. Let every man be respected as an individual and no man idolized. It is an irony of fate that I myself have been the recipient of excessive admiration and reverence from my fellow-beings, through no fault, and no merit, of my own. The cause of this may well be the desire, unattainable for many, to understand the few ideas to which I have with my feeble powers attained through ceaseless struggle...

"The most beautiful experience we can have is the mysterious. It is the fundamental emotion that stands at the cradle of true art and true science. Whoever does not know it and can no longer wonder, no longer marvel, is as good as dead, and his eyes are dimmed. It was the experience of mystery -- even if mixed with fear -- that engendered religion. A knowledge of the existence of something we cannot penetrate, our perceptions of the profoundest reason and the most radiant beauty, which only in their most primitive forms are accessible to our minds: it is this knowledge and this emotion that constitute true religiosity. In this sense, and only this sense, I am a deeply religious man... I am satisfied with the mystery of life's eternity and with a knowledge, a sense, of the marvelous structure of existence -- as well as the humble attempt to understand even a tiny portion of the Reason that manifests itself in nature."

A larger excerpt of the full essay was found in a web exhibit at the American Institute of Physics: http://www.aip.org/history/einstein/essay.htm/

Empathy or Apathy.

“Never, never be afraid to do what's right, especially if the well-being of a person or animal is at stake. Society's punishments are small compared to the wounds we inflict on our soul when we look the other way.” - Martin Luther King Jr.

Lesson for the day. There's no worse feeling than that of complete insignificance. It may be YOUR life, but remember that you live it in the company of, and in collaboration with everyone around you. The world does not revolve around one person, but that same person can have a PROFOUND affect on the world around them and beyond. Live YOUR life, by all means, with no apologies for being who you are. JUST PLEASE REMEMBER, that YOUR personal actions, or lack thereof, reflects WHO YOU ARE. And, although this analogy has been done to death, it still applies here. A drop of water within a still pond creates a ripple effect that extends to the ponds' outer banks. You might not be able to see the effect, but it is there. The current keeps its movement. You are not immune to cause and effect.

Even comments that you speak for yourself has an effect on everyone around you. Phrases like, "F*ck My Life" or "I hate today" has NO productive value. Now I am NOBODY'S judge. I am guilty of saying "I hate today," - OFTEN, a lot more than I would like to admit. As a voice of experience, I can tell you that this only brings my attitude further down, and more often than not, kills my day completely. It's like saying "F*ck You" to God, throwing the gift of another day back with disdain. Looking at it from a completely agnostic standpoint, let's say you are having THE DAY from hell. Your attitude sucks, and it wears all over your person. Whether you intend it or not you are putting a piss-poor vibe out to everyone in your company. There will be a REACTION to your action, except that, NOW you are getting it back, multiplied by ALL of NUMBER people you affected! You didn't MEAN to, but BAM! Your whole damn week is dangerously close to getting FLUSHED!

Call it Karma, if that's your thing. Point is, You get BACK what you GIVE OUT.

On that same token, words UNSPOKEN or actions NOT TAKEN out of apathetic disregard (it's not my problem, or, I'll get to them/it later,) can SCAR every bit as much as disparagement. The emotional fallout is invisibility, unimportance, resentment, returned apathy, vindictive spite, attention sought by acting out... As HURTFUL as the words sent into the Universe out of anger, hurt, fear or frustration, also hurtful are effect of an uncaring heart. At least we can blame emotional impulse for the former. Apathy takes forethought, the end of resolve, GIVING UP.

Of course, in certain scenarios, walking away might be the best thing if no productive discourse can be achieved. Some people NEED drama. Some LIKE TO ARGUE. Period. In those cases, you can either return fire, guide them to the nearest Community Theater or Law School (I can recommend a GREAT Law school for anyone interested.) or release their "grip" on you and move on, head held high.But even THOSE people need attention, affection, love, understanding... HELP. To shut off one's heart, To turn yourself cold to the love in the world, is the true sin. The true goal is to treat others as you wish to be treated. And Treat YOURSELF and you would wish others would treat YOU.

Final thought:

There are some really DUMB Apps on FB. I have so many that I often forget they are there. One of those Apps is "On this day of your life, God wants you to know." I rarely look at it anymore. Then yesterday morning, as I was finishing up this entry, I received this message in my notifications. "On this day of your life, Danielle, we believe God wants you to know ... that what you say and what you do matters. When you show kindness to others, your words and actions have a positive ripple effect which spreads out to affect many people. The same thing happens when you are impatient, intolerant or indifferent to others. What kind of effect do you want to have?" 

Damn.

Blue Monday.

Well, today is light it up blue day!

This is my first year as an "Autism Mom." I'm still getting used to that phrase, and my family is still learning our way around, but I find myself today proud as can be of my son, Ryan, our family and all we've overcome since Ryan's new journey began back in September, 2011. There have been ups and downs since then, moments when I wasn't sure we would make it through all of the changes, but it is April 2nd, World Autism Awareness Day, and here we stand, stronger in so many ways, than we've ever been.

One thing I'm learning about Autism, is that there is no right or wrong way of living with it. From day one we were told, "YOU are the best advocates that your child will ever have." I want to thank someone here and now. I am stronger, and more vocal in raising support for Autism research and understanding, IN VERY LARGE PART because of Laurel Collins, Ryan's Advocate during OUR path of discovery. Laurel gave us the tools to help our son succeed, to help us grow as champions for our son. We would NEVER have grown so quickly, and Ryan would NEVER have received all that his school system gave to him, without all of Laurel's help. I will never be able to thank her enough for that.

I'm so much more secure of myself as a person and parent now, than I was on December 2, 2011, the day we got Ryan's official diagnosis of Autistic Disorder. That day was mired in regret-that we dropped the ball on our son, fear- that others would be "mean" to him, or not give him a chance, anger- feeling let down so badly by so many that should have have my son's best interests at heart, and doubt- that we would be able to do right by our little boy. I pictured Ryan's beautiful, smiling face and cried, BUT the only feeling that I NEVER HAD was SHAME IN MY SON. With all the uncertainty, wondering about the road ahead, I have never, from the day I first saw his face, doubted that Ryan could rule the world someday. This diagnosis changed NOTHING for me in that regard. My Ryan was and IS still my Ryan. If anything, We are prouder of him than ever. That day, my pride did not extend to myself. I was a bad mother. I had let him down. It took awhile for me to get over that, and feel like I could handle all of this. I'm still working on it.

TODAY, RIGHT NOW, I feel like I can handle anything. Even as we face stresses from the possibility that Ryan is having Absence Seizures, and the EEG's and MRI'S that go with it, juggling ABA'S, BCBA'S, ABCD's (I made that up) SPED Directors, teachers, Doctors, etc. etc. etc., I feel good about the path ahead and the steps that I am treading now have a much longer, more self-assured gait.

TOMORROW, I might be polar opposite of how I am today. As I said, because Ryan is so high functioning and doesn't "look the part" of an Autistic child, it becomes difficult at times, to explain his behavior, particularly during an episode. I've been told, somewhat mockingly, that Autism is the new flavor of the month, like ADHD was, and have been judged for giving my son an unnecessary diagnosis. During these moments, the talons come out, and I find myself wanting to act in VERY NOT Christian ways (not that I'm much of a good Christian to begin with...) and fight my own emotions (as most friends will tell you, I can't NOT cry when I get upset.) to get over their ignorance.

At this moment, as I sift through remnants left behind from the "Tornado of 2011" that passed through the small town of our lives I am fortunate to find our home still standing. It's been awhile since I last posted on this blog. So much has happened that I wasn't sure where to start back up. I was afraid to speak my mind, I think. But fear is not a place I like to dwell in. I have THREE AMAZING children and a wonderful husband, and a life that is well on it's way to being GREAT. And I want to write about it! This diary is about my own path of evolution. Today's post is about Ryan, Autism, and what the merging of these two entities has taught me.

Ryan sees in black and white, but loves with a heart that is a RAINBOW of color. He lives a completely authentic life. There is no malice in his heart, no ability to lie. He lives 100% in the moment. Ryan wants to be like his ABA, "Mr. Ben" and work with kids like him when he grows up. I'm not sure he even understands what growing up means. I don't think he understand what "10 minutes from now" means. But I do know he has a purpose and he WILL succeed. Through Ryan, I am learning to understand the true GIFT that is "living in the moment," free of self-doubt, the Superego and all that negative B.S. that has held ME back my entire life. He stops and smells the roses, and even though they make him sneeze, he laughs about it. He catches sight of all of the rainbows. The ability to live FULLY within his heart is a gift that Ryan is passing on to me. Just by watching him, I am learning to live life as he does.

However, I would like to note, as I visit many of the Autism network pages, and in my interactions with other parents affected by ASD, that GIFT is NOT a word that I will ever again use to describe Autism. I HAVE been guilty of this, and sincerely apologize, for inadvertently causing any other ASD parent pain. I can't imagine the hell that some of these families suffer. Every case is different. Some are high on the spectrum, like Ryan. Some can't move or speak. Some parents wonder if their child will have any quality of life whatsoever. Ryan has a great future ahead, and I KNOW how lucky we are for that!

If you are reading this, I hope that you will take some time today to visit the Autism Speaks website, and get more information. http://www.autismspeaks.org/what-autism. ASD is SUCH a wide spectrum, and SO worthy of understanding.


Much love to all of you,
Danielle