I love Jess at A Diary of a Mom and Leigh at Flappiness is… too, so I completely understand why all of you love them. I followed Jess closely as she went to the White House and I went with Jess to Harvard and I will be eternally grateful that she took me along. I fell in love with Leigh over her beautiful Apology letter. I too enjoyed #youmightbeanautismparentif and #whatanautismparentneeds. I even added to the #AutismPride although not as eloquently as some of you. Yet, all of you break my heart everyday without realizing it.
My heart breaks because I know my daughter did not have the services your children have. My daughter did not have our understanding when she was little because we did not understand. We tried to get help, but we got the wrong help and during that time damage was done. Then bullying made everything over a hundred times worse. Still, she was on the mend until last year when the bullies rubbed salt in her healing wounds, and an intolerant teacher pushed her over the edge.
Then I convinced her to share her heartbreak and her successes with you, but she never got the support Jess and Leigh get, so she stopped sharing. She realized what I tried not to believe. Too few really care and we cannot make any of you care. We are insignificant.
Bullying is not as interesting as successes shared about cute younger children. There is no way to make it fun because there is nothing fun about it. I hope and pray none of you ever know the heartbreak of trying to help your beautiful children overcome the longterm effects of bullying or worse yet having to bury them because of bullying. I was hoping to help prevent this from happening to you. I now realize I cannot do that because no one is really listening.
We are misfits even on the Island of Misfit Toys.
Good Morning, My heart goes out after reading your post. I do not know what your daughter went through but I see how badly you want to inform and have people care. I have Bipolar Disorder and recently started my own blog to bring awareness to some of the good things that come from it – or that good things CAN just like the “bad” The stigma of having a mental illness is sad and unnescessary. I linked to your post with my most recent one and just stopped by to let you know, It is a humor piece and may not seem pertinent and you may even not like the name but it isn’t a joke in that it talks of awkward moments and being and feeling like Misfits. Of how the things that make us different if looked at in a different light, make us special instead of fair game. I will take some time later today to read and learn here and I wanted to let you know about my link..
You post appears to be missing. My heart goes out to anyone who is hurt through ignorance. I have had sexual related spam both on my blog and to one of my e-mail accounts recently after two of my e-mail accounts were hacked, and your link showed 404 missing content, so it went to spam and I deleted it. I found your blog and realize it is not what I thought, so you can resend the correct link and I will approve it.
You are welcome to comment here anytime. See even I am guilty of jumping to conclusions. I’m afraid it is too common in our society. I do hope you are finding a community where you are comfortable. I still dream of a day when people are more accepting. I hope one day the world will understand that most of the diagnoses we call “mental illnesses” are in fact not “mental” at all, but chemical or neurological.
Thank you so much. I kind of figured that either the link would go to spam or that the title would be misleading. I completely understand why it wouldn’t appear legitimate. I don’t how else to resend it – I am kind of new to the technical stuff so I will just put it at the end of my comment. I am glad you enjoyed my blog and appreciate your comments. I have found so many really wonderful people here it is like home. It’s true that the labels do not tell the truth about the things we are – sadly the true bullies don’t care if you can help it or not. But I bet there are some that are bullies that once they understand things better do cease the meaness. Differences scare people and knowledge is the key.
Thank you for stopping back by and leaving the link to your post. I appreciate your support. You are a wonderful writer and I look forward to following your blog more closely once life settles down a little here.
Grace thank you so much!!! Your words are always balm to my soul! God bless you!
I don’t blame you for being discouraged and your situation is a difficult one. You make me sad that you think you are ineffective as you do reach several people. I am one that has learned a lot about autism just by knowing you and reading your posts and try and support events that teach tolerance.
Take care and know I love you.
I’ll tweet this comment and come over to facebook and join my retweet group. There are good people over there that will retweet links if you post them there.
It’s a closed group but I’ll see your request and press the ‘yes’ button.
You and Sharon have affected me more deeply than you know. I would not have kept going as long as I have without you. Sharon is my role model, and Sharon I know you will read this too and honestly, it is true. You took an impossible situation for Adam and you turned into a possible situation and you never stopped seeing your son.
I get the idea of having pushed people away with expectations. I worry about the same thing, but the reality is people need to speak up and if they do not feel they can, then they need to support those who do.
If more had spoken up in Germany would so many Jews have died, if countries had responded to Rwanda sooner would lives have been spared? No and yes! That is exactly what has kept me going this long, but what if you speak up and no one listens and the deaths continue anyway? Then isn’t it the same as if you never spoke at all?
I just read Bill’s post and I am going to comment on it there. I am just not sure I am up to it today. Today I am very jaded and I know that is not a good thing.
I understand and appreciate the sentiment of your blog post. I, too, have tried to be an advocate for my son and for others with visible and invisible disabilities. I also feel that I have changed no one’s behavior. I have tried hard…he has no friends. Out of seven siblings families from my wife’s side of the family,and out of numerous cousins; one aunt and one young cousin relate at a modest level to Adam. He is of no difference to those who knew him. We are of no difference to our families. Being of no difference denies the core of one’s existence.
We speak out, as you do, my friend. I admit that after nearly 100 blog posts, I have effected no one. I also probably pushed people away because of my expectations. I sing to the choir and have developed some great on- line friends…they understand because they have been initiated into the world of disability.
If you are the parent of a bullied child, you understand. If your are the parent of a disabled child you understand. If you are a bullied child or disabled, you understand. We constitute a special universe. For too many outsiders, their consciousness not been allowed to rise to the point of being active in a movement. Tolerance, to me, is of little value…it connotes putting up with. Acceptance and embrace is what we seek for ourselves and our kids. For too many people, this is an overwhelming request. It is analogous to silence of the world during the Holocaust…people lived lives not worthy of life, people were made to feel that they were of no difference…the sin of indifference.
All that there is left is to continue to confront the darkness…over and over again. Please continue your pursuit of your vision, it is important to all of us. My friend, bill peace, Ph.D. recenty posted a post in his blog “A bad cripple” which echoes many of same sentiments :
The choir is supportive of you, your daughter and your efforts.
I had to respond. . . I am so familiar with the upbeat mother warrior (I’m talking about you. . . ) and your blog posting shocked me. Then I started thinking. Our challenges are different but I can identify with the frustration you are feeling on several levels. In our therapy community Adam is one of the older patients. Most of the families found this therapy for their young children and, of course, their progress is strikingly more obvious. We didn’t discover the therapy until five years post accident, allowing us to make many poor decisions along the way – Also, the young families have no clue about what happens to their disabled child when they no longer have a school community to support them. We keep Adam close to home (not even thinking about day programs) because abuse, neglect, ignorance about his care, is rampant. I can equate this with bullying.
When I wrote my book I truly wanted to be a change agent. I wasn’t just telling a story; I truly wanted folks to understand trauma and the deep healing that was necessary. I wasn’t really advocating a particular therapy but encouraging people to “think outside of the box”, to understand the body, mind, spirit connections in this life. Some heard the message, some read the book out of curiosity and others just didn’t care. It’s so hard to accept this non-caring piece and I still struggle with it. I’m still receiving checks in the mail from Amazon and people are still reading the book – one year later. Slow and steady and you can make a difference.
Take a break, my friend, and breathe. . .
Yes, I do try to be the positive warrior mom and for the most part in the past I succeeded. Several events on Facebook and on Twitter recently sent me over the edge, and I know people are clueless and are just trying to protect themselves. I get it! I just don’t like it.
I know you and I sometimes feel each other’s pain. I wish people would get it, so the pain would go away. I definitely need to take a break and if I do not get support with this post, I may step away from blogging after the end of the month.
I will keep my New Year’s resolution and complete my Word Press Post a Week challenge for 2011, but the rest of my posts probably will not be about bullying. It hurts too much to see how many young people are still dying due to bullying and how others post about the deaths and get responses, but then people go right back to burying their heads in the sand including those who do the posts.
It especially hurts that they all support other difficult causes like responding to the a request to post positive things about autism to try to help prevent another parent from murdering her child due to the diagnosis, but they do not speak up or support me when I try to promote teaching kindness, tolerance and acceptance in our schools. They do not seem to understand that the book was written to teach others about the wonderful traits people with differences can have and how successful many can be with love and support.
That is why I am not even sure if I will write the second novel after all. Too few get it and the costs of getting it to print are too high if no one is going to read it anyway. I never expected to become a best seller, but it would be nice to actually break even in sales. I have given my novel to people at two schools and to the libraries at our local schools, and also offered to speak out about bullying free of charge and I have two groups interested, but nothing confirmed.
I am too frustrated for words and bullying is still rampant in our schools and communities.
Thank you! You have been more supportive than most, but if you could share this post I would appreciate it. I am not asking anyone to read every post or to become an advocate against bullying yourself. I just need help to get my posts noticed by others, so I can be effective.
This post is not about my followers believe me. I will e-mail you with the link to her blog.
I’m sorry you are feeling badly and unappreciated. I think you are doing us a great service with your writing.
I’ll admit it is hard to read about bullying. As a parent of a young child I don’t know what to say. I also kind of don’t want to think about it, but I know I have to, particularly since she is starting kindergarten next year. I can see a subtle difference in the schools that have more formal bully awareness programs.
I hope you won’t beat yourself up too badly about the past. You are doing an awesome job now, that is what is most important. I do feel a little guilty that us parents of young children do get “more” than those who came before. But I have tremendous respect for you wise ones. 🙂
I also missed your daughter’s posts.
I hope you got that as my daughter does not what to post the link directly, so I removed it.
I only started following you recently so have no idea what your daughter was sharing. Would love to read it though. Can you direct me to it?