Lately, I've read a few blog posts and articles that question the whole idea of sharing thoughts and stories about parenting an autistic child. The gist of them is that it's not our story to tell as a parent---that someday, Janey may want to tell her own story and that she might not appreciate what I've written about her childhood being out there in internet-land. It's a very valid thought to consider, and I have been thinking about it for a few weeks. I've concluded that I think it IS valid for me to write about her, and I'll give my thoughts and reasons.
The first thought I had, to be honest, was that Janey will never be able to tell her own story. I hope I am wrong there. I hope that Janey does learn to read, to write, to be able to tell me her take on her life. I hope that extremely much. But I don't think she will. I know there are non-verbal people with autism who do communicate very well, through writing. But I don't think Janey will be one of them. It's not that I don't think she would ever be capable of that, although I do have my doubts about that. It's more that she is not very focused on written or visual communication. She's an auditory person. She talks probably more than would be expected for someone at her level of functioning in other areas. She listens pretty well. She seems to have vast, vast stores of auditory memory---songs, lines of conversation, full movies. But she has resisted most any attempts to convert this knowledge into written form, or to use a visual communication method. So maybe she'll dictate her story? I don't think so. I haven't ever really heard of an autistic person who was minimally verbal in a truly communicative way at Janey's age who then became verbal in a way that could tell stories of the past, or give perspective into what is inside her head. I hope I am wrong there, but I honestly don't see Janey being able to tell the world her own story.
Next, I had to consider WHY I write about Janey. There are two major reasons. One is to keep myself sane. Writing is my release, my way to getting through the days, of working through my own thoughts, of being able to face the future. Quite selfishly, I need to write. Less selfishly, I need to write to be able to be strong for Janey, and for the rest of my family. I need to know I can sit down here at the computer and write about my life and Janey's life. Without that, I think I might give up. That's the ugly truth. The other reason I write is to provide support to others with children like Janey. I think over the years, I've done that some. I've had people tell me they feel far less alone after reading my blog. I've had a few people tell me that I helped them go on after tough times. That means the world to me. I don't advertise my blog much, and I'm not part of the larger blogging world. I am not good at that kind of networking. But somehow, over the years, people have found this blog and have told me it's been helpful to them, and that is absolutely one of the things I'm proudest of in my life.
And so here we get a bit of a vicious circle. I write about Janey so I can continue to parent her---so I can have the strength I need to be the best parent I have to her. I write also to hopefully, in some small way, give strength to other parents. Raising a child with autism is not easy. I don't think even the most positive parents would say it is. And raising a child to reach their maximum potential, to maybe someday be ABLE to tell their own stories, is even harder. We need all the help we can get. We need support from others that truly understand. We need to know there's an outlet for all the feelings that this tough parenting gig brings up---sadness, frustration, sometimes anger, sometimes despair and sometimes, yes, extreme pride and happiness. We need that connection. Without, I know I couldn't go on. So in order to give Janey the best chance at a full life, and the little bit of a chance she might someday be able to tell her side of the story, I NEED to tell mine.
We all make mistakes as parents. If anyone thinks they don't, they are probably making more mistakes than most. So, if writing this blog is a mistake I'm making, I'll take that chance. I'll take the chance that Janey will come back some day and hate me for writing it. If that happens, I will accept that, because writing it would have helped me help her get to the point where she could express that. I'll keep writing in the hopes one day Janey can tell me if I did the right thing or not.