About 2 months ago I came across a blog written by an adult woman on the autism spectrum disorder. I don’t recall the specific article or topic that led me to this blog but I liked it and found it helpful for me so I decided to start following along. Then a few weeks ago there were two separate articles posted that really made me stop and think about why I write, if it is wrong for me to write and about the potential impact on my son (both good and bad). In fact I have been so bothered by these specific articles that I pretty much stopped writing because I felt really bad about this particular blogger’s message. I have gone back a few times to reread the articles and am feeling a bit better about sharing our story via my writings but there continues to be some doubt. Writing for me is a really enjoyable hobby regardless of the topic. I started to write because I like it and those who follow my posts know that while I may have started writing or sharing my experiences being Charlie’s mom, many of my posts have nothing to do with autism. I don’t view my role as a burden nor do I view Charlie’s diagnosis as a tragedy…..it’s just what our world is and in my view I guess I feel that sharing information could be really helpful for those who spend time with Charlie. It is my job to navigate the world for him, to help others understand who he is and what he needs and to make sure that I understand as much as I can about how the world works for him. Do I have to share this via a blog? I guess I don’t to be honest and if writing has a negative impact on my son or his life than I don’t want to do it. Quite simply writing has been a nice outlet and I have met some really great people or connected with those I have not talked to in a while so I guess I don’t see how that could be viewed negatively.
The first article I read on this blog was focused on digital exhibitionism and how terrible it is for parents to use a blog or website to discuss or show (via video or pictures) what it is like to parent a child with autism. When I first read these words I felt like I had been punched in the stomach and literally was so upset for a while wondering if I could be considered one of these parents who was seeking pity or embarrassing or abusing my child as a result of writing my blog. I have reread the specific article many times and am starting to feel that my stories and writings are in no way meant to do anything hurtful, look for pity or make my son feel in any way that he has made my life worse or caused me pain. Nothing could be further from the truth – Charlie has shown me what life is really about and is the reason I smile and laugh every day. I do not broadcast his worst moments or videos of what a tantrum looks like because frankly that is no ones business and I guess I just don’t see the point of focusing on the negative stuff when there is plenty of positive and fun experiences or occurrences to pay attention to. In fact sometimes I wonder if I sugarcoat our situation a bit too much as I rarely go into detail about some of the challenges or day to day difficulties we experience. So while I know that my reasons for writing do not align with those discussed in the article I read I continued to be haunted about it and could not bring myself to write again for weeks. Even now I am struggling because every sentence I write is followed with the thought “would this upset, embarrass or humiliate Charlie if he read this in 10-15 years?” I guess no one else can tell me why I write or what my own reasons are but I have a feeling that reading that post a few weeks ago may impact the frequency of my writings or cause me to think much more than I would have before about every word or sentence I write. Whether or not that is a good or bad thing, I have not really decided.
The second article or topic that caught my attention was the anti-light it up blue campaign found in the autism awareness and acceptance community. April is autism awareness month and people were encourage to light it up blue which I felt was a positive event yet apparently I was wrong about that or the idea that everyone felt it was a good thing. Within the autism community many individuals feel as though Light it Up Blue and the entire awareness month is more about corporate autism and support of Autism Speaks than about really understanding, accepting and supporting the autism community. So here I was again….thinking I was doing the right thing to support the cause and my own child but being forced to reevaluate the reasons why I was participating or encouraging others to get involved. We have a team of people participating in a walk in a few weeks and while I am not looking for this cause to become all consuming in our lives I guess I just did not see anything wrong with supporting autism awareness and more importantly autism acceptance. Is it really that terrible to support the cause? We support so many causes as a family and I guess I have always looked at it from the standpoint of what could be negative about helping to raise money for any organization that is aimed at funding research to find ways to offer better services, find a cure or provide to families and patients impacted by any number of medical or personal issues. This whole autism awareness month is bad or light it up blue is wrong issue caught me off guard and made me think; in the end I feel comfortable with supporting and participating and can let this topic roll off my back much easier than the first.
So….in addition to just being busy with our upcoming move the real reasons I took a break from writing was simply in reaction to what I was reading. I think it is always important to try to see things from a different perspective and to understand the opinions and views of others…..doing this is actually a very important part of how I choose to live. Sometimes this tendency to empathize with others or become too emotionally involved in their views/feelings can be a negative and in this case my tendency to over-empathize almost led me to just shut down this page. While I may still be on the fence about the opinions voiced above I am choosing to do what feels best for me and for my family. Every single mom I know, every single parent I know only wants what is best for their children and I am no different. I hope being involved in the autism community or sharing some thoughts via this blog don’t make me a terrible person like these articles infer and just because a parent may write about their experience or try to become involved in the autism community it definitely does not mean that the diagnosis is viewed negatively or as some horrible tragedy. In the grand scheme of life, this is minor, not life or death and the way I see it the real tragedy would be not having Charlie in my life and all the joy, happiness and fun he brings to my world.