A Kind of Reverberant Pain

Tags

autism, Avonte, Avonte Oquendo

A friend texted me around 1 p.m. today. She used more than 160 characters but as soon as I saw the “Avonte,” I knew what she had to tell me.

Both of us have children on the autism spectrum.  I wanted desperately since October to be proven wrong, because I was a realist on the outside and a secret idealist.

I told her that I was in shock but not shocked by the news.  The local stations had reported the possibility since last week.

I cannot think.  I feel and it is too great for me to share.  That’s why I told my friend that I felt a pain, a reverberating pain, as if once I read the words the parents of Avonte reached out to the whole world with that pain. 

I’m not ready to think yet.  We are all feeling this shared pain tonight. 

I don’t think I will sleep well tonight.

NYPD Commissioner Ray Kelly Says He Fears Avonte Oquendo Is Dead

I think about this child nearly 3x a day thanks to the various missing person flyers all over the subways for three weeks now. I wonder now – what is the use for our current surveillance technology, invasive and treading on privacy issues as it does, if it can’t bring one child home to his mother? The geek in me wishes Superman or Wolverine could leap off the pages of fiction to save this one solitary boy. I’d take a billionaire faux Batman at this point.
#FindAvonte #BringAvonteHome

Queens Boy With Autism Still Missing After Wandering

I’m still looking up information as news reports from the NYPD about the missing 14-year-old boy with autism. He was not found as reported 6 days ago.

If anyone in the 5 boroughs of New York sees a non-verbal boy matching his description, call the tips hotline at 800-577-TIPS immediately. 

I received a petition request about a project which claims to have a 100% success rate in tracking over two thousand missing cases of people with autism or Alzheimer’s who wander. I thought it might be helpful for people to understand “wandering” first as it relates to people with Autism Spectrum Disorder (ASD).

“WANDERING DEFINED

Wandering is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which can result in potential harm or injury.  This might include running off from adults at school or in the community, leaving the classroom without permission, or leaving the house when the family is not looking.  This behavior is considered common and short-lived in toddlers, but it may persist or re-emerge in children and adults with autism.  Children with autism have challenges with social and communication skills and safety awareness.  This makes wandering a potentially dangerous behavior.” (Source: The AWAARE Collaboration, http://awaare.org)

The AWAARE Collaboration website has free Safety Toolkits to download for caregivers and emergency responders and other materials developed by the National Autism Association. For more information about AWAARE, which stands for Autism Wandering Awareness Alerts Response and Education and is a working group of six national non-profit autism organizations, visit their website. Their mission is to prevent autism-related wandering incidents and deaths.

Yes, Yes, Natalie Portman Is One Awesome Feminist, Duh

Tags

feminism

Currently reading “Dear Natalie Portman: Can You Stop Being Awesome for Even One Sec” by @laurabarcella http://jane.io/GA6Dnw via @xoJanedotcom

Definitely worth a look on the “strong woman” myth.

Baring Yourself in Your Art

Tags

creativity, how to be, how to be an artist

“… if you are an artist, that means that you are denuding yourself more and more, that by the time you die you are stark naked and your bowels turned inside out.”

– Henry Miller, January 26, 1938, in a letter to “Michael Fraenkel of the myth”

How to Solve Street Harassment, A Short And True Story

Tags

say no to street harassment, street harassment

I’m going to try to keep it brief because I try to be a humble person.

Completely forgot that I was a hero on Wednesday.  No hyperbole here.  A F*cking H-E-R-O.

As ThisKidHere and I were walking home, I overheard this guy talking to a girl.  Something about the conversation sounded familiar so I stopped. He was on a bike waiting for the light to change next to a very pretty girl with headphones.  He would say something, she’d reply with a word and put her headphones back on.  “Hey, hey. Whatchu listenin’ to that got your attention?” I’m no Sherlock but this went on a few minutes but not that so long I couldn’t figure out what was happening.

As Ru would put it, JUST BETWEEN US GOILS.. . If you were ever with a friend, would you keep listening to your music while they were talking to you?

I walked over and said to her, “Hi, there.”

She took off her earbud again.

“I couldn’t help but notice this guy bothering you.  Do you need some help?”

She very sweetly said no and I walked away while the guy was openmouthed and (finally) speechless.

Not a half a block later, Bike Perv called to me and told me not to interrupt him when he was talking to his friend.  I yelled back, “She wasn’t your friend.” I thought, “Numbnuts.” I continued, “It’s called STREET HARASSMENT. LOOK IT UP.”

And that is how I solved street harassment, from one woman to another. You see something, say something. (The MTA had it right but not for racial profiling.) 

The End (of this story but not to cat-calling, sadly.)

Back on track… soon

All I’ve got to say is… watch this space.

I’m coming back to my territory here and it will be good to see.

For Martin William Richard: Peace, little man.

Tags

bombing, Boston, Boston Marathon, Facebook, grief, heartbreak, Journalism, Martin William Richard, NY<3B, prayforBoston, questionable taste, Rest In Peace, sensationalist media, senseless violence, solidarity, Steubenville, Tragedy, UnitedwithBoston, violence

I feel sick to my stomach reading about the death of the 8-year-old Martin William Richard in Boston. He was a third-grader just like my son. My heart hurts for his family. In a statement, Martin’s father asked for “patience and for privacy as we work to simultaneously grieve and recover.”

At the same time, my head hurts that I can’t simply read about what happened without trying to avoid shoddy, sensationalist journalism. CNN, after the Steubenville verdict… NOPE. ABC… nope.

Martin’s life was so short that news outlets keep turning to friends and family to paint a fuller portrait of this kid. His friend and frequent playmate was asked how she felt. She said she felt “scared” because she didn’t know where the bombers who did this could be, and so, in her mind they were everywhere.

I feel the same way about this that I felt after Newtown. Media outlets have forgotten what good journalism looks and sounds like. I don’t want soundbites and edited video clips that get recycled in an endless loop to fill airtime. I want real journalism– tell the story. Tell the news.

Today there is a photo that has gone viral in less than a few hours.  I have made a conscious/conscientious decision to not post it here. You can easily search for it by typing “no more hurting” or “peace” along with Martin’s name in the search field. You can also find it on Facebook because the poster made the photo public. Again, I have decided not to post the link.

Screen capture of Facebook photo currently circulating. Taken around 3 p.m./PST.

At the time I am writing this, the photo (around 3pm/PST) has 116,596 likes and 67,271 shares (number of downloads is unknown). The photo was posted about 8 hours ago (7 am-ish here so close to 10 am on the East Coast). HuffPost and its ilk picked up the photo by noontime. I’m not going to lambast this person for trying to honor Martin’s memory. She wasn’t even Martin’s teacher.  She was a friend of the teacher who gave art projects to his class that touched upon social issues.

What concerns me most about this photo being readily available online is that people rush to share and make it viral without hesitating even a moment to reflect on its appropriateness. The irony of Martin holding a sign with words he wrote (No more hurting people/Peace) is undeniable. We should take those words to heart but I question whether it is right for this photo to circulate all over the Internet after his grieving family asked for privacy.  I am very protective of my son’s image; I try to maintain as much of a modicum (or delusion) of control over his likeness and intellectual property of his artwork on the Internet.

A woman posted a comment under the photo: “Been thinking about him all morning and having a face and connection to go with it makes it that much more real.” Isn’t the cost of violence real enough? Do we as Americans lead such a sheltered life free from so-called “real violence” that we need to have a first-degree personal connection to grasp and process its realness? I doubt that his parents have much time to be Internet watchdogs and take down personal photos of their deceased child. Martin’s mother and sister are still recovering from their own injuries.

I can only speak to my own feelings as a mother and no one else’s experiences. There is much to be said about solidarity, the feeling of being united with other human beings. To me, it’s the near visceral feeling of community and mutual support. It may be the idealist in me that believes we all start life with the capacity to feel for other people.  Let’s reclaim that again, here, in this moment when we are grasping for other hands to hold because we are lost and overwhelmed by sadness.  Loss is incomprehensible; it cannot be wholly grasped by our limited minds so we need our hearts to finish the job.

Let’s honor those this world has lost yesterday using our minds and our hearts. Show solidarity but use a pinch of restraint and good conscience before you hit that “Share” link. There is much to be said about plain and simple solidarity. Sometimes it is unspoken. Sometimes it is best expressed in what is not said, or in this case, posted online for the whole world to see and claim.

Let’s not forget the aspect of mutual respect in solidarity. I want to respect Martin’s family in my way, which is to refrain from uploading his picture all over my social media.  I remember you, Martin William Richard, without ever meeting you. When days go by and people have forgotten your face because your photo has stopped being viral to make way for the next trending photo, I’ll remember you without ever needing to call to mind your face.  Because in my mind and heart your face is the same as my son’s – innocent, young, happy.  His face is the same as every child that we meet so, no, thank you, media outlets. I don’t need careless visual exploitation of one child’s face to remember violence and tragedy and death and heartbreak are all real.

Peace, little man.

Equal Education But Still Unequal Pay

Tags

equal pay, Inauguration, women

In light of President Obama’s mention of equal pay for our wives, mothers, sisters and daughters, here is a reminder of how far we have to go.

Source: Learn Stuff Infographic

Make A Manifesto, Not A Resolution in 2013

Tags

Applied behavior analysis, autism, Autism spectrum, health, mental health, New Year, New York City Teaching Fellows, Zen

December 31, 2002 — New Year’s resolutions don’t appeal to me very much today because I don’t want to think about being a better person. Are there things that I can improve upon in 2013? Certainly, but that’s not the issue.

Behind every resolution is the deliberate and conscious decision to do or not do something. Making one on New Year’s usually assumes that you are going to do something different from the previous year and that difference will almost 100% be an improvement. No one resolves to be a worse person.

I say meh to that notion. Meh, I tell you.

In 2013, I’m going to do something daring. I’m going to be more myself.

Sure, I made mistakes in 2012 and I’ll probably make new ones next year. I just think that at my age I don’t want to make apologies for who I am anymore and I might as well celebrate what makes me who I am.

That’s why I came up with a manifesto. For months, I’ve been thinking about my personal philosophy instead of any self-improvement to-do list. I don’t feel a need to write my whole manifesto here because there’s no need. I believe that my inner thoughts will give way to my actions towards others.

Why am I feeling so Zen and at peace after such a tumultuous year?

A few days ago, I was backing up my computer and found the following excerpt of my essay for New York City Teaching Fellows. I was going to be a special education teacher, even before my son was diagnosed with autism. I reread the two pages describing 2006, the year of my son’s diagnosis, and I realized I am the same. I still reflect on old experiences in the same way, even after 6 years’ worth of new challenges in raising my son.

I found comfort in my own words, as narcissistic as that sounds, because certainty in a life with autism is a luxury. I have taught myself to be as flexible, open-minded and adaptable as possible to understand my son. Knowing that I am the same person that I was in 2006 assures me, however imperceptibly, that I’m doing something right. I don’t need somebody else to validate me and my parenting, though I do appreciate it when someone compliments me. I did it myself.

One good thing about self-acceptance is that it’s viral. I accept who I am and I can teach my son to do the same. Not a bad start to a manifesto, if I do say so myself.

If you have time to check out the essay, read below and have a happy new year.

[Writer’s note: It’s not exactly untouched. I couldn’t help from making slight grammatical improvements.]

==========

Then, June 28th came. I remembered because I heard the words “PDD-autism” from the neurologist on the same day as my mother’s birthday. I also heard “definitely autism” on the day before my father’s birthday in August. In between those months, I had only one doctor offer the opinion of “probably not autism” but he was quickly overruled. The year was suddenly split in two: pre-autism and post-autism. In the first “pre-autism” months his father and I felt like his diagnosis was an indictment that would eventually condemn him to a lifetime sentence of academic obstacles and social alienation.

I needed time before I could completely accept autism as part of him. Even after reality had set in and I scheduled assessments and treatment appointments one after the other, I was still trying to grasp the meaning of everything. I wasn’t sure why any of it was happening, as in why did my son have to have autism. Did my desire to teach make this entire ordeal more bearable? Did my son’s need draw out and strengthened my resolve to be a good teacher?

The answers are not important. I needed him as much as he needed me – simple. He needed the mother in me who refused to give up on her son. For his sake and mine, I needed to be the kind of person who would not give up on anyone. I know my son will learn differently from other children because of autism. He processes language in a way that I did not understand until recently. I refused to allow the world to shut him out at only three years old. I believed that abilities, natural and attained, carry us through obstacles to the best of possibilities.

I don’t know the exact moment but I decided that I would not let autism disable him. I chose to focus on his abilities, and his potential for more. I threw myself into parent training in Applied Behavioral Analysis with promising initial results. When his progress reached a plateau and I hated myself for my shortcomings, I kept going. I read all the related books in the catalog and on interlibrary loan. I nagged his service coordinator in the early steps program for any and all services he could qualify. I called nonprofit agencies and parent volunteers who might have resources for him, and then I nagged his service coordinator even more. The entire month of November was ruined for me because I played phone tag for weeks with a behavior analyst, the hospital insurance specialist, and my insurance coordinators over the slightest chance of behavioral therapy. I heard the final “no” on the last day of November, my birthday.

Tenacity or plain obstinateness got me through December. The feeling of helplessness that ebbed and flowed in my life last year made me fall back on whatever ounce (or gallons) of tenacity I had in me. A “no” on Monday meant that I would keep calling or e-mailing someone on Tuesday, Wednesday, and on until I got a “yes.” I would not give up until I found people who would not give up on my son. At this time, he attends a school where his teachers appreciate his unique qualities and learning style as I hope to do for others in the future.

I want to be the tenacious advocate of education and learning for others. I want to prove the abilities need to be nurtured and sustained through resources in and out of the community.

Pamela K. Santos (@PamelaKSantos) isn’t usually this self-assured but it’s New Year’s Eve so might as well be bold. As always, she is honored to get the chance everyday to be a mom to #ThisKidHere.