Sunday morning – 1:30 am. The night had just wound down. It was FAR past my bedtime. John was headed home, the last of the local ladies had hit the road and those that were staying over had just retired to bed. I was far too wired to think of sleep. The evening had been a whirlwind of activity and emotion. I was exhausted, but I knew that sleep was not going to come quickly.
I headed down to the office and logged onto the computer thinking I’d quiet my brain with some idle activity. Perhaps a game of Scramble or Word Twist on Facebook or a little light blog surfing. The computer screen began to glow, brightening the dark room as it came to life.
I typed no more than www. and the computer’s browser filled in the rest. As soon as I got to wordpress, the night was changed.
A new comment glowed yellow, awaiting approval.
I feel your enthisiasm and energy for helping autistic children.
But are you doing it for those who are severly autistic-what is her daughter’s diability and diagnosis? She seens much fortunate than many children and adults. Do you know what it feels to have two autistic children? One that after
12 years of struggling to keep her home with loved ones and to let go of your dreams for her to send to her to a residential program (Don’t worry it is the best in New England! But, in addition to having a beautiful aeverely autistic daughter (who in any parents dreams would love her to ice skate like your daughter) has an autistic son! I think you know who I am talking about. You have read her blog and did not mention to her what is going on this weekend. She has struggled for many, many long years to help both her children succeed. Do you know what it feels like to have to send your child away after giving your all to help her in a home setting. I do not think you do. You should be ashamed about talking about a “god awful quilt” that was donated to you auction. Do you know the most important thing in a gift is that it is from the heart! You should be ashamed of yourself. I am advocate for autism, and I have read many blogs, and do you know you have a neighbor in Plymouth, Ma who has more than one autistic child? I think you do and it shameful of you to not let the mom know of the event you are holding for autism.
I will be holding 3 lectures with guest speaker Jenny McCarthy this calendar year. I will make sure your are extended an invitation but by no means any praise. Many people think you do what you do for you, not for your daughter and other children but for you. You give because you want to give and to help others and not for the praise!
I thought my heart would pound out of my chest. I was shaking. I could feel the commenter’s anger steaming from the glowing screen, sucking the oxygen out of the room.
I crafted a response. I edited it. I re-edited it. I had to say something. On so many different levels, I didn’t feel like I could let it go unanswered. There was so much raw emotion. Here’s what I wrote.
Wow, I’m not even sure where to begin to answer what you’ve thrown at me here. I’m aghast that somehow I’ve incited so much passion and anger.
I do not know, nor have I ever or would I ever claim to know, what it feels like to have two children with autism. I can only speak from my own experience with my little girl. My heart goes out to anyone who has to struggle with the kinds of challenges that you describe. My experience with my daughter is obviously very different.
You ask if I know what it is like to have to send my child away. If you know anything about me then you know that I do not. I cannot possibly imagine how difficult that must be for a parent.
I do not presume to represent anyone but myself here on this blog, or anywhere else for that matter. As I said, I can only speak from my own experience. I can only hope that by doing so perhaps I can empower others to feel comfortable doing the same.
I have never professed to speak for an an entire group of people. No one can. I have said time and again that our experiences are as unique as our beautiful children.
I do what I can to advocate for my child and to demystify autism in the best way that I know how – by speaking from my heart and by sharing my story in as human and as real a way as possible. You say that you are an advocate for autism. I am sure that you too are advocating in the best way that you know how. We all come at it from our own perspective and hope to make some small impact in our own way.
You say that it is shameful that I did not let a mom in Plymouth know of the ‘event’ that I was holding for autism. Last night’s dinner was in no way shape or form an ‘event for autism’. Rather, it was a gathering of friends that grew organically from a thread of comments on this blog, in response to the raffle to raise money for a service dog for a friend’s little girl. From the comments, an e-mail chain began and the next thing we knew we had plans for dinner. I would never purposefully exclude anyone and I truly apologize if anyone felt that they had been left out, but please understand that this was not an ‘autism event’. It wasn’t even something that I created!
As for your second to last sentence, it is true – but only if you are speaking specifically about writing. I do write for myself. I have never claimed otherwise. I write for a sense of community and understanding. I write because I connect with wonderful people with whom I find common ground. I write because it makes me a better parent.
Anyone who knows me – who truly knows me – knows that at the very core of my being I am a mother – that there is nothing in this world more important to me than doing right by my children in every way that I possibly can. Every single thing that I do ultimately comes back to that. If anyone sees me differently so be it. In the end, there are really only two people that I need to prove myself to (Katie and Brooke).
I’m sorry that I somehow made you so angry and I am terribly sorry that the mom in Plymouth felt left out.
As advocates for people with autism, we ask people to open their hearts to those who are different from themselves. We ask them for compassion and tolerance. I hope that we can interact with one another from that place – a place of tolerance and understanding and above all, respect.
I’d hate to see any of us spend what could be useful and productive energy tearing people down.
All the best to you.
My eyes finally closed sometime after 5am.
I know y’all are eager to hear about the evening’s gathering, and I promise to share it with you. But I just can’t stop chewing on all of this first.
The thing is, I get it. And the more I think about it, the more sense it makes to me.
I remember the first time I was called an ‘autism advocate’. It was right before I spoke at the kick-off for the Autism Speaks Walk. I received an electronic flyer describing each speaker. And there it was, in writing – Jess, autism advocate. I stared at it for a few minutes. Really? Is that what I am? I had never thought of myself that way. But I guess it made some sense that from the outside, that is indeed what I was becoming.
When I spoke at the event, my knees knocking together from nerves, I said, “I can’t speak for you. Your child’s experience is different than my child’s. Your experience is different than mine. ”
I know full well that my experience is at the shallow end of the autism pool. Relative to many others our challenges are watered down, manageable.
There has never been a moment when I have not been acutely aware of how blessed we are that Brooke was painted as lightly as she was by autism’s brush. Dumb luck? A missed half dose of flu vaccine? Random genetic shaping? No idea. It just is what it is. I don’t take it for granted. Ever.
At best, the system of grouping such varied degrees of neurological affectation under one umbrella is confusing. Even after all this time and discussion, I still have a tough time explaining the concept when pressed. I don’t doubt that over time the process of diagnosis will become more refined. I would imagine and hope that the various gradations and different manifestations of what we now know as autism spectrum disorder will be broken down into myriad specific sub-categories.
But for now, the name that is given to Brooke’s particular set of challenges is no different from the name given to those who are far more severely impaired. And when I stand up (literally in front of a crowd or metaphorically on my blog) and say that I am speaking as the parent of a child with autism, perhaps that’s not as clear as it needs to be.
I understand the commenter’s sensitivity to that distinction. It makes perfect sense. My life is very, very different from the life of the mom described in that comment. Our challenges are not remotely comparable.
I started this blog as a personal outlet. I did not write with any goal other than to maintain my sanity. I wrote because I was overwhelmed and I needed an outlet. I sent my posts to close friends and family members and never had any expectation that it would be anything different.
But it became something very different. It became interactive. It became public. As people began to share it with each other it became even more public. And so, when a dinner organically springs from its pages, I guess someone out there is bound to view it as ‘an event for autism.’ And sadly, (heartbreakingly) someone is bound to feel left out.
Quite simply, I don’t know everyone. I can’t. Circles intersect and the world is small, but there are still countless wonderful bloggers that I have yet to encounter. Happily though, we are never more than one comment away from a new connection. That’s all it ever takes.
I can’t wrap this up neatly. I don’t know how. It’s too messy, it’s too painful. It matters too much. But I’ve got to come up for air.
I will write about dinner in the next couple of days; I promise. In the meantime, you can always head on over to John’s place and see if you can guess which shoe is mine.