Tuesday, February 18, 2014

Why I can't *LIKE* Happy Birthday Colin on Facebook

For the past week or so  I have been getting invitations, been tagged on facebook, and seen this thing on all of the popular pages I "like", with the exception of a few.

The thing? The facebook page "Happy Birthday Colin".

Reading about Colin very much reminds me of my own son, there are so many similarities. So why haven't I "liked" this page? Why haven't I said anything about it?

I wasn't going to make a post about this because I know when I am critical about things that make the majority feel good, I tend to piss off the masses. But, yesterday the Autism Society of America posted an article from Slate.com about this facebook page/cause. It was a bit critical, but still did not hit on the points I think are being missed. The article on Slate focused on the "no friends" aspect, which seems to be the thing that most are picking up on.

I understand the things this mother is experiencing. It is extremely heartbreaking to hear your child state he has no friends.

But,what most don't understand is there is ALWAYS more to "I don't have any friends" than a child just not being invited to be social or actually having no friends at all. It involves peers intentionally excluding a child from activities, which is a form of bullying. There is usually a good bit of teasing and picking on as well, which is also bullying. Bullying causes a lot of damage in the long and short term. Worst case scenario is death (typically by suicide)

My son was picked on, bullied, and triggered to react for others' pleasure.  Most of the time school administrators blamed my son, did nothing at all or punished him for his reactions when they did nothing to prevent or stop the bullying that was the cause of his reaction.

Oh! Well, there was one exception. In 6th grade, an administrator actually asked me if I would be okay with disclosing my son's diagnosis to children that wondered about him. My son did not want his disability disclosed at the time. I believe he has a right to his privacy which also includes his disability. So,I suggested  we could  facilitate a program on diversity instead. I was shot down. Apparently, invisible disabilities are not a diversity issue that needs to be talked about.

I was also rightfully afraid that if his disability was disclosed to others it would just be more fuel to the fire. I knew the school had no programs to help children (or adults for that matter) learn what diversity or an invisible disability was, so disclosure of his disability under circumstances where the majority was already ignorant would only hurt him.

I also did not want him to be pitied or have people befriend him simply due to his diagnosis. I didn't want my child to be like the autistic boy that Kathy Lee Gifford made cry on national television. I did not want him to be someone’s  inspiration porn or someone's way of getting a "good people" cookie. Those types of “friendships” hurt just as much as bullying because they are fake.

I also did not want him to hurt more than he already was. I wanted REAL solutions, not patches over the problems that he was having. I didn't want a few moments of happy followed by months and months of more grief. I wanted improvement over his entire situation... but I suppose that is too much like work for some people. It's not the kind of "cause" they want to take on and not many people do.


Nonconsensual Disclosure of Private Issues

I have a hard time being okay with a parent being extremely public about their child's disability without the consent of the child. Especially when the child is already a victim of bullying. There have been numerous news articles about Colin, some state his disabilities as Aspergers and SPD. His mother states that is incorrect, but that his disability is LIKE Aspergers and he has behavior problems. No matter the semantics of his disability, she has gone very very public with it. That makes me uncomfortable in ways that makes me want to take a scolding hot shower.




The page has almost 2 million likes. That's 2 million people who know Colin is disabled and is bullied. But, Colin has no idea his mom is putting his very personal information out there. I also highly doubt she understands that the repercussions of this could be really really bad for her son. I am so concerned this will increase the amount of bullying that is happening to Colin. I am so afraid that this will backfire on his mother.

I know how mean some children can be. “You suck so much your mom had to make a facebook page to get you friends” or phrases similar to this one come to mind. If it doesn’t happen immediately it will likely happen in the future. Things placed on the internet stay on the internet. This will not be erased and could potentially haunt this child for many years.

I am concerned that instead of focusing on the real problem at hand, his mom is just trying to "patch" it. I am so afraid that once Colin's 15 minutes of fame are up, he will be left exposed and vulnerable, with the same problems as before maybe even worse. It's a very real possibility, and I know my cynicism takes away the "feel good" of this story.


Bullying

One of the very first posts on this page told of how Colin is picked on and teased. His mom basically says he is a good little Christian boy because he begs the principal not to punish those that pick on him. While I think forgiveness is an awesome thing, it really disturbs me that her son is not wanting any action taken against his bullies. There can be many reasons a person may not want to have action taken against their abusers/bullies. Sometimes that forgiveness is genuine. But, when it’s an ongoing problem in someone’s life that leaves them friendless and lonely, it is rarely genuine "forgiveness" and more of a damaging coping mechanism.
Also, since he is very excluded he may be willing to take any kind of treatment in order to try to gain friendship, that's not healthy.

I have very forgiving children, I can understand how Colin's mom is so proud that her son can forgive. I am REALLY proud of that in mine too. I teach my children that it is really important to report bullying and abuse, even if they feel like they are able to handle the situation or can forgive. We have a responsibility to other people as well as ourselves to report every.single.time. Bullies rarely only target one person. I also teach my kids that bullies are people that need help too and that there is probably something going on with them that may cause them to be this way. So by reporting it, we are also accessing help for the bully. I certainly hope this is being taught to him as well.

I fear Colin doesn't understand that while it's okay to forgive, it's also not okay for people to be bullies and pick on others. I am afraid that the people who are supposed to be protecting him are not doing their job. I am afraid that he is not able to be upfront about everything that he really is going through because he may feel that in order to forgive,he has to endure the pain as well.  His mother claims she has taken action, I don't doubt that she has, but what about Colin's ability to speak up? How much of this is he internalizing? How much is he really enduring silently?


I remember when my own son was going through something similar. It got to the point where he trusted no one. When he'd come home from school he'd tell me about things and I'd ask if he told an adult. He'd say "There's no point they won't do anything about it". He was right, they rarely did anything about it and when they DID it turned around to bite him on the ass. He left public school at 13, he is nearly 16 now. It has taken us 2.5 years to build his trust back up and reteach self advocacy skills because people in charge at his prior placement did NOT see that is was important to protect him and take his claims seriously.

One last concern, how much of this facebook page thing is actually for Colin and how much is for his mother?

I’m sure it may make many very uncomfortable or angry that I am pointing out that the one time act of kindness is not going to help resolve much for Colin and could potentially harm him for years to come.

What he needs is adults in his life that are willing to take real action to help change his circumstances.

1.9 million facebook friends isn't going to fix or change that.

Thursday, February 13, 2014

#LoveNotFear When words fail, Music speaks





A lot of my feelings and emotions are expressed through music, especially when writing fails me. Not my own music, but others' and specifically music lyrics. 

I attempted to write 3 times on the #lovenotfear topic and the right words eluded me. 

So,I thought this would be a perfect time to share with others my way of expression, connection and special interest, while also promoting the #lovenotfear theme :) 





A Fine Frenzy's "Minnow and the Trout" speaks multitudes about how I feel. People are so scared of different, they fear it. Please don't fear difference.


"And I said, Please, I know that we're different
We were one cell in the sea in the beginning
And what we're made of was all the same once

We're not that different after all"










Bob Marley's "3 Little Birds" is one of my favorites as well. I think people over think and get scared. Or they are overwhelmed with fearful messages which leads to them being fearful too. 

There just are not enough positive messages out there in circulation to drown out the fearful ones. But, that message is out there. 
One of my hopes with the Boycott is that it will help get more positive messages out there about autism. 



"Don't Worry about a thing, cuz every little thing gonna be alright"





AWOLnation's "Kill your Heroes" because it pretty much says (to me) that we should kill those preconceived expectations so we can grow and we are not what others are, we are who we are. Oh and this:


 "Never let your fear decide your fate"





And how can I forget Imagine? Lennon sings "I hope some day you'll join us and the world will live as one" 

I believe once fear is put aside this will be possible, for people of all differences and neurologies to love and accept one another.

 "You may say I'm a dreamer" 






And if you're still set on being fearful and pushing your children to be normal instead of loving them for exactly who they are... Then this is the is the message you are sending:

Perfect by Alanis Morissette 

'We'll love you just the way you are, if you're perfect"




Thursday, February 6, 2014

A vow to my child: I will not break you

My son is nearly 16 and the years have flown by at light speed.
It seems like I blinked and the years were gone.



It seems like just yesterday he was 4 years old, running circles around my feet while giggling and rattling off lines from his favorite movies...

Ahhh... he loved movies, specifically movies on repeat, as I called it. The same ones over and over again. It was endearing to me.

I use to be a prolific journal writer. I kept a handwritten journal from the time I was 14 until I was 32. The consistency of writing in it meandered as the years passed. 

From time to time I go back and read these journals.

One particular thing I noticed that has been consistence throughout my reflections was


"I don't want to break his spirit"

Throughout the years others have tried though... I watched his smile fade as he encountered ignorance and lack of acceptance (specifically in school). I remember looking at this brown headed blue-eyed cutie and thinking "Why can't they just see what I do?"

 I have watched that smile return the past 2 years and his spark reignite as we found a place for him in the world where others  DID see him the way I did. A place where he is accepted and respected.

It wasn't about changing him to fit the world, it was more about changing the world around him to fit what he needed.



Sunday, February 2, 2014

When the need to tell your story arises, don't trust the media to tell it correctly

Everyone has a story and people like to share their stories. Some people like to retell these stories. Some people actually make money to retell or report other people's stories, we call those people the media.

Around Halloween of 2013 I was contacted by a reporter for the Clarion Ledger newspaper based in Jackson, Mississippi. She stated she was doing an investigative report on special education in the state of Mississippi and asked me if I would like to share my son's story. She told me of the staggering statistics about how many of our special education students were not being set up for success and gave me comparisons for other states. Education is my thing, it's my heart, so are children with disabilities. This was a chance for us to speak up and make a difference. But I was torn, should we do it? Would my son want to?

So,I thought about this.

Hard.

I decided it was probably not in our best interest to do this interview. I was afraid the story would be told wrong and I worried about how disclosure like that would affect my nearly 16 year old son. I know he is a very private person and would probably decline the chance to talk with someone about his school experiences. There was no way I would do it with out his consent and participation, after all it is HIS story and life.

I pondered on whether to even tell him about the reporter or not. I wasn't exactly sure how to approach it.

He and I were driving back from attending one of his IEP meetings, we were feeling really great about the meeting. I was thinking about how proud I was of him because he was learning how to advocate for himself and becoming an active participant in his meetings.  I decided it would be unfair to him not to tell him about this. So I mentioned it.

Me: "You know a reporter for a big newspaper in our state contacted me on Facebook and she wanted to talk to us about your school stuff because she knows there is a problem across the state."

Him: "You should do it"

Me: "Well I thought maybe it wasn't something we should do  because I know how private you are, I didn't think you'd want to do it. It would mean everyone would know about the school you go to, your disability and how you are no longer on the high school diploma track. It would be on the internet, that's a lot of people"

Him: "But what if it helps someone understand? What if it keeps it from happening to someone else? We should do it Mom"

Me (fighting back tears): "Okay we will think about it and talk about it some more later."

How could I deny my son the chance to tell his story and make a difference? He wanted to help, he is a budding advocate, how could I stifle that in him?

We did think and talk about it some more and in the end we decided it we would do it.

About a week after our decision we meet with the reporter. She had already gotten his story from me in print but we also did a face to face interview. I was feeling pretty good about it. I thought this was finally his chance to get some justice. We learned we would be naming Moss Point School District in the paper. We both were super excited about that, because we both knew his experience in the school district was not uncommon for many who have differences (whether race, disability, sexual orientation)

As a matter of fact, Southern Poverty Law just filed a lawsuit last month against Moss Point School District and the principal of Magnolia Jr High, Durand Payton for LGBT discrimination that happened at the same time my son was being bullied by this principal.  So, I was hoping perhaps there would be a way to get the attention of the Department of Education or SOMEBODY that this school district is hurting our kids and not doing their job. Connecting that issue with our issue somehow, in other words

Today the story we interviewed for came out. I can see how it is aimed at educators and professionals to get them to understand how the system is hurting our kids. But, I had hoped for a little bit more of my son's story to be told, as was done with the other cases covered in the same report. I also feel like the outlook that we may seem to have about his future might be misconstrued, so I wanted to clear that up as well. My mother said it read like he was a victim. My son is not a victim, his future is still bright and I am very hopeful he will reach what ever potential he was meant to reach. There was also some words put in my mouth, and I am upset about that as well.

I have decided will be writing follow up posts to tell his story (with his permission). More to come....

These links have been removed and this post edited to protect my son's privacy.