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Sunday, September 9, 2012


I got a comment from an anonymous poster who said:

That was a touching story, however, given that your child is 10 and struggling with fitting in don't you have any concerns that writing such a blog with his pictures and full name might embarrass him and make him feel further alienated? Children are cruel. Not only that but you're also leaving a trail of history that may follow him throughout his future.

My son is the same age and has similar struggles, but I can't imagine "outing" him since it's his choice to share his disability - especially as he grows older.

I applaud your passion and advocacy but why don't you keep it about yourself and focused on your expertise? 

I wasn't sure how to respond at first. I told the poster that I would take some time to ponder their words and then come back with a blog post.

So here I am. 

I pondered things a bit and I did a little soul searching and I came to this conclusion. 

I don't for one moment feel I am embarrassing my child with this blog. Everything here is honest and objective and is nothing to be ashamed of, from either of us. 

Kids are cruel, but also, kids go on places like Facebook to find incriminating stuff. I highly doubt that they would ever find this place unless they suddenly became Sherlock Holmes. 

As for "outing" him, I told Nathan when he was 6 what he has. He has always known that he is different than other kids, but I have always said that it is his choice to share it with others if he wishes.  I told him that I was going to start writing a blog about our experiences. I asked him for his permission and his input. He is aware what goes on this site. He goes to a wonderful school system that supports him and his classmates for the most part are understanding and encouraging. Some of them are not. That is the web of life.  So, no, I never outed my son. 

I can't keep it just about me, as if it wasn't for him, I wouldn't be able to do this. I wouldn't have his experiences, his words, his thoughts, his processes, it would be very one sided and that's not how I want to share things with others. The point of this blog is to be a place where like minded folks can see that they are not alone, that there are people out there like them who struggle like we do every day. That there are awful tragedies and amazing triumphs.

That I am here to put out to the world what I have learned, what I am growing into being, what I have seen with these eyes, because when I started this journey, there was nothing. I had no resources, no leads, no help and what really felt like no hope. That's a scary place that I don't wish anyone to have to visit. With this blog, there is hope. I have touched people. I have made a difference. And that is all I could ever ask for. 

I can't and don't want to change your mind about how you feel. Your choice to keep your son's diagnosis to yourself is completely your business and I will never judge you for that decision. The world is a cruel and cold place for folks with challenges. However, how do we make it less cold and cruel unless we use our voices to make change? Why should we remain in the shadows? Ignorance breeds fear and fear breeds hate. Awareness working towards acceptance is my goal and my purpose. It is my choice to walk into the light and to say that my son has these things, and this is what we do to and that I pray it can help someone, some how, some day. 

If you ever choose to walk into the light, please know we are here on the other side. 


10 comments:

  1. Amen. I understand that people with certain conditions face an uphill battle in society - but don't we all, in one way or another? I would rather teach my kids that who they are is perfectly acceptable, and nothing to hide or avoid having others know about. Hopefully, fully embracing themselves, they can see others' prejudice for what it is -- someone else's problem, and not theirs.

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  2. i too have been pondering an answer to your anonymous poster's comment - my conclusion is pretty much the same as my initial reaction - 'outed'? really? if your child/spouse/friend had diabetes or epilepsy, would you hide it? having others around know, learn about and understand 'different' conditions is crucial to helping your love one cope - aspergers syndrome would be the same - there should be no shame or embarrassment - it actually helps others understand the aspie's unique footprint in our lives when they know the challenges the aspie faces every day - my husband's family reacts in denial and embarrassment and it breaks his heart - i am sad for anonymous' son...

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  3. I am back and glad to see that you gave my comment some thought and you were concerned enough to address it. My initial comment was short and I would like to go a bit deeper into my concerns through addressing some of your points.

    -in this day and age kids are much more technically savvy than I feel you're giving them credit for. Many a mind less capable than Mr. Holmes use Google every day - kids too.
    -Posting your son's pictures and name is simply dangerous.
    -I don't understand your feeling that you haven't and aren't continuing to out him. Children are not capable of making informed decisions about their current situation in many cases and certainly not when it comes to decisions that impact their future. How could he possibly be able to weigh the pros and cons of publishing his private life (with pictures and his name) on the internet? You are the one making the decision, not him because you are his parent. You also shared the content of a private therapy session on your blog I think that's a real betrayal of trust.
    -If your motivation is purely to advocate and connect with others why don't you do that anonymously? It looks to me as though you're trying to build a business based off your child's disability.
    -"Ignorance breeds fear and fear breeds hate. " agreed, but you're putting your son in a position to be a martyr for the cause. Descrimination is very real. You're making him a poster child and that has some very serious potential impacts. Perhaps when he's old enough that's the path he'll follow, but isn't that his choice to make? Right now you're making it for him.
    -"If you ever choose to walk into the light, please know we are here on the other side." - I have to say that that comment felt offensive. I walk in the light, I just wouldn't push my kid into stagelights without him understanding the tradeoffs.

    I'm honestly interested in your responses.


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  4. I also hope that you consider what Anonymous wrote. I had a 14 year-old client last year that attempted suicide because she was being bullied at school. Her mother wrote a blog and a classmate found it. The blog did not share much but the kids at school still found details to torture her with. Your personal desire to advocate should not come before protecting your son as best you can. You have a lot to share but don't do it at your son's expense.

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    1. When I type your son's name into Google along with "asperger" your blog comes up as the third result. Anyone can find your son.

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  5. You obviously have an amazing heart, Amy. I think the issue here is one of real privacy. I googled your son's name and found this blog immediately. I think there's nothing wrong with sharing your experiences - but maybe it could be done with first names only or something that protects his privacy. He may not want his entire childhood experience chronicled when a future school admissions officer, job prospect, or even potential partner googles him. It's your shared story to tell, but it will be up to him how he chooses to share that story in the years ahead. It doesn't look like you need to change anything....other than so prominently featuring his name.

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  6. I really truly HOPE those of you critiquing her are joking. Do we seriously live in a world where diversity is something we have to worry about?

    If a mother of a child who was struggling with racism or religious prejudice was posting about her son's struggle to fit in, she would be praised for her BRAVERY.

    We are human beings. We were made to gain insight from one another. This blog is a learning experience for anyone who encounters it. And to those who mock or bully her son for it, they should be reminded of how children like Nathan are protected by the law.

    When we tell people to hide who they are and what their struggles are because they may be bullied or they fit outside the social norm, we enable bullying. We enable scrutiny. We enable kids to think that diversity is something to be embarrassed about, something to hide.

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  7. You choosing to keep your children out of the spotlight is completely your choice and I respect your decision to do so. Your choice to keep their diagnoses to yourselves is also your choice. I would never judge you for your choices.

    I think we have to look here at the concept of hiding. Both of us have nothing to hide, nothing to be ashamed of. Our struggles and triumphs are similar to everyone else's, except we've put a name and a face on it. I think the last poster makes a valid point. If it was someone who was struggling in a different arena: discrimination, poverty, race, age, sex, gender, religion, would you ask them to please not identify themselves and to keep it on the downlow? Would you ask them not to share their stories with others, to keep it anonymous and safe? I'm not interested in making my child a martyr, but also, I'm not going to keep quiet. There are several hundred special needs blogs which show children's faces and names. There are thousands of other blogs with folks who are working on a journey and detail their every move, along with pictures, contact information and other tidbits.

    As for future consequences, this is a story of survival, of successes, of troubles and problems and overcoming them. I've had employers, parents, school officials, authors and special needs advocaes (Holly Robinson Peete, Yoko Ono, and Shonda Schilling) read this blog and give me nothing but praise about what I am doing. His therapists completely know about what I do and read what goes and are completely supportive. I can't see why this blog would be a negative for him as he grows. It shows what work he's done, how hard he is focusing to make his life a fantastic joyous thing.

    Also, if kids are going to find things, then they will find it. We live in an age where it is impossible to keep anything off the radar. And honestly, it is disappointing that kids are still in a place where they fear things that are different or unusual and in their fear and anxiety, the only thing they know how to do is to hate and to bully and to shame and to find methods to bring other people down. He's at a place in his life where he knows that kids look at him different, and sometimes treat him different, but he has the tools to be okay and to walk through life with his head held high. He has a wonderful support system in place and is in a great school where they are accepting of who he is. Is everyone going to be accepting? No. And that is life. There will be folks who will not be tolerant of him and he knows this. He has nothing to be ashamed of, being who he is. He is proud of who he is. I am proud of who he is. I'm not going to have him not be who he is because it makes other people uncomfortable. He may speak too loud or talk too much or have a narrow subject focus, but I wouldn't change that for the world. Nor would I change what I've done here.

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  8. Amen Sister!
    You are a fantastic Mom with a wonderful son.

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  9. I am proud to be your sister. <3

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