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Tuesday, October 29, 2013

Should I even be writing about Janey?

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.


Mary Leonhardt said...

Your blog also helps people like me, who don't have an autistic child, or know one quite as disabled as Janey, to have a glimpse into the incredible effort and resources needed to raise such a child.

As Janey, and children like her, get older, it will more and more be the village needed to care for her. Your blog helps the community to be more aware of the resources that will be needed to care for her.

Most importantly perhaps, your blog is such a riveting glimpse into her world, I'm hoping that researchers discover it and can use your insights into finally figuring out how to prevent, and help this heartbreaking condition

Freeyoke said...

There’s thing a called “opportunity costs”. When we choose to invest our time and resources on someone or something it detracts us from using our time elsewhere. I wouldn’t consider it a waste of time to write about my own ASD daughter but she’s only three so I can’t really do it myself juggling a job and her two-year old brother. I’m slow on the keyboard and end up with proofreading errors so it’s a pain in the butt to post consistently. If you weren't writing, would be doing something that much more productive? My daughter had her first day in a pre-school intervention class and was clueless as to where she was going on her first bus ride to a new school. She’s not verbal enough to say anything about the experience. She may as well been abducted on a UFO and back to Earth without any change in her demeanor. At least she didn’t seem traumatized left in the company of strangers for the first extended time. Suzanne, you’re posting for us because a lot of us just can’t write well or long enough. You tell us what the future is or might be for kids younger than Janey. There’s a lot posted on the Internet including stuff on autism but I couldn’t find many “case studies” that reminded me of my kid none as prolific as you. I’ve been reading all your posts starting in 2013 then going back to 2007 forwards. I converted your posts to Word and highlight the parts that hit home or are unusual to me so far. It's obsessive but I'm trying to see if there are any longitudinal patterns in your kid's behavior that can track with with my kid. I read your "don't compare" advice but I do the compare and contrast standard college question to a lot of things to get some insight. I don’t think Janey would get mad at you for writing about her for her. If she was that functional in the future she’d have so many things she could do or wanted to say that it would be pointless complaining about a past she had little control over.

Suzanne said...

Thank you to both of you for your very kind comments. They, along with the ones people left on my Facebook page, really encouraged me and moved me to tears a bit. It's wonderful to think of my blog giving others an insight into the world of autism, whether they have a child with autism or not. David, I have noticed the same thing you did---that there are not many actually day to day case study type details on autistic kids as they grow up, and it's great thinking I might be able to provide that just a little with this blog. And you have a great point---if I wasn't writing, I wouldn't be doing anything more productive! Likely, I would be playing Scrabble or napping---those are the things I do when I have time to do something besides be with Janey or my other kids, or do housework! If Janey does someday find a way to read this blog, I hope she will understand that I wrote it out of love for her, and out of hope and caring for all the other kids with autism out there.

Simone Blanchard said...

You write because you have to. It's that simple. And you help others in the process. Immensely. On some of my hardest days I look at your posts and think, shit, if she can do it, so can I. Loads get lighter when you realize you are not alone.

I used to share my musings with my mom, the person that was the first to speak with me about my boy’s differences. He, being a first child. And a first grandchild. It was a form a therapy and I’ve missed it since she passed. Because I got to be totally honest. Not all glitter and unicorns. I’ve thought about doing it anonymously online.

My walk is a little different because he falls on the Asperger side of the spectrum. I know Aspergers can seem like ‘autism light’ to some. But he is under so much pressure to pass as neurotypical in his mainstream school setting. At 7 he is realizing how different he is and trying to make sense of it. I can be absolutely heart breaking some days.

Leigh said...

Hi, Suzanne and all. I've been reading your blog for awhile. I found it while looking for information on families with differently-abled kids, their parents and the expectations and experiences of siblings in particular. There isn't a lot of literature on the latter.

Anyway, I've appreciated it very much.

My younger sister is differently-abled. Our family is close and we visit together regularly. They do not discuss her situation at all, and never have, so I am looking for other families' experiences to relate to.

I have only talked to my spouse and a few close friends about this. My best friend from high school, who watched her grow up, says "It'll be OK. She's just austistic!" At this point I suppose we have to be grateful for the massive efforts of families and autism-awareness groups to put attention on this, but I know from your experience this shows there is still a lot of work to do on it.

My sister has never used the Internet and if you were to look for her I don't think she would show up on it. I think that documenting Janey's story and that of your family for the multiple purposes it serves is a great contribution.

Anyway, it seems that Janey is enjoying her school year and appreciates routines. Everyone needs routines to compound learning, and differently-abled people definitely do.

Like everyone else here I have come to know you and Tony, William, Freddy and Janey. I'm very hopeful for you all, and your good days definitely lift the spirits.

I'll check back in soon. You're an excellent, natural writer by the way. Keep it up.

Alana said...

I think it is nice that you have thought about the possible implications of this. I find this really interesting, because I remember being told not to use my real name on the internet, but I'm young enough (so I'm 22 so barely an adult) that I also have been used to using the internet for everything useful my whole life.

And I do find the internet and my blog and writing and talking to people I have never met to be really useful. But my general rule is that if it is something that I wouldn't say in public, something that I wouldn't want future potential employers, my grandparents, or (potentially worst of all) future students to read, I don't connect it to my real name. (That's why I use Alana for my blog, which is only part of my real name, and generally don't identify my graduate program or the city I live in on my blog-internet-part.)

So that's always an option. To change names and not use any super location-identifying information ( or use initials or something (or probably even just avoiding last names being connected with it) is a way to still be able to write and also help protect your children's anonymity.

Just an idea.