Keeping on blogging, even when it's hard to do

Over the seven years I've had this blog, I've almost never NOT felt like writing for it.  Even on the worst days, writing was something that helped.  This past week, though, is the very first time I've had less than full enthusiasm for writing here.  

I've noticed, in reading other autism blogs, that most of them deal with kids making a lot of progress.  I don't think this always means that every kid with autism DOES make a lot of progress.  I think it means that when the progress stalls, the writing does too.  It's easier to feel excited about writing when there is something new and exciting your child is doing to talk about.  I think this is also one of the reasons that there are less blogs out there featuring kids with low functioning autism (and yes, I do hate the term, but for now, it's the term that will let people understand what I mean).  Another reason of course is that LFA doesn't leave a lot of time or energy for blogging, but it's more.  I think people want to write encouraging and upbeat things.  They want to help others.  They want to give hope to those with newly diagnosed kids.  When that gets hard to do, it's harder to find a way to write that feels useful.

The past year with Janey has been a very discouraging one, overall.  After starting her 3rd grade year with enthusiasm and excitement, after looking forward to her being part of a brand new K-12 pathway at the school I loved, after having high hopes when she showed signs of being able to read---things felt like they came crashing down.  Janey's behavior escalated, and I gradually had to accept that the school she was in was no longer the right place for her.  Sometimes I feel like it's only now it's really hit me.  Although I know I'm being a little dramatic in saying it, it's hit me that she couldn't be included in a school called a total inclusion school.  That was and is tough.  

Janey's behavior has changed in quite a few ways over the past year.  It was about a year ago she first started biting her own arm, a behavior that now shows itself almost every day.  She also started lashing out by pulling people's hair, scratching them and occasionally biting them.  This doesn't happen all the time, but it happens enough to put people around her on edge.  The screaming escalated to a new level.  When Janey screams now, it's absolutely incredibly loud and horrible to hear, because she sounds like she's in extreme pain.

If I'm totally honest with myself, I also have to say Janey talks less than she did a year ago.  Sometimes I make myself go back and read old blog entries, where I often quote things she has said, and she is not currently talking as well as she did at almost any point in her past.  Her speech at this point is either requests or quotes---almost never anything else.  The requests are only in regards to food, videos, sleep or hygiene (wanting a shower or her hair brushed, things like that).  The quotes generally have nothing to do with anything actually going on.

Janey's sleep is also often very disrupted.  It comes and goes, but there are often two or three weeks in a row where she wakes up every night at 2 or 3 am and doesn't go back to sleep.

I have to admit it---I'm depressed and discouraged lately.  It's hard for me to be encouraging in my writing.  It's hard for me to look at the bright side of things.  

However, I'm going to keep writing.  I feel like I have to, for myself, for Janey and for the other children out there with low-functioning autism.  Unlike those with higher functioning autism, children like Janey are not going to write their own blogs (and I know there are rare exceptions, but those are children who HAVE found a way to communicate, which means they CAN speak for themselves, and it is great they can).  I want to be the voice Janey can't be.  I want to be honest about her life, and our life.  I owe that to her.  I want to be a voice for the kids like her---the ones that don't make for conventionally uplifting writing.  I want to do that because despite that, she is a person of value, a person with just as much importance and just the same rights as any other child.  If I don't write the truth about life with her, I am hiding who she really is, and who she is is not something that needs to be hidden.  I love my daughter more than words can ever say, but I'm going to try to keep using words to give her a voice.

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.

Why I blog

If you search for blogs about autism, you find a very lot of them.  However, what you don't seem to find is too many about truly low-functioning autism.  There are some, and of course kids with all kinds of autism do have traits in common, and there is no real set in stone dividing line between high, medium and low functioning autism.  But the fact is I haven't found a lot of blogs about kids that function at Janey's level.  And I think I know why, at least partly.  With LFA, the narrative can get stalled.  What Janey is doing now is very similar in a lot of ways to what Janey was doing a year ago, or two years ago.  She doesn't make huge breakthroughs.  And because of her LFA, we don't do a lot of other exciting things that would spice up a blog, like taking big trips or outings.  We aren't following a radical new treatment regiment.  Janey is not suddenly picking up her iPad and writing books, and I doubt she ever will, although of course it would be wonderful.  Janey is Janey, and that's what I write about.  So why?

Well, for three reasons. 

The first is that writing is my therapy.  I'd write about Janey even if no-one was ever going to read it.  That is evidenced in  the 20 or so diaries I have around the house, which I mostly wrote in high school and college, but some as adults.  I wrote for myself, because writing is how I process things.  The day Janey was diagnosed, I started this blog, and I think I did it in blog online form mostly because I can't even read my own handwriting any more, and I wanted to type a diary.  I'd heard about blogging, and I figured I'd try it.  I didn't tell much of anyone about the blog, and I didn't promote it except in very small ways.  Gradually, it started to get read, and now, it gets read a good deal, which is amazing and wonderful to me.  But I still write in it much for myself.  When I have a tough day with Janey, or a wonderful day, my first impulse is to write about it.  

The second reason---to give Janey a voice.  I hope someday Janey will have her own voice.  I certainly follow with interest news about other people with LFA finding a way to communicate.  But in all honestly, I don't think there is a huge hidden store of deep insights that will someday make up a beautifully written book inside Janey's head.  And my point here is that that doesn't make her life, her ideas, her communication, her voice ANY less valuable.  I don't want to give her a voice to prove that she somehow has hidden stores of miraculous insights.  I want to give her a voice in a way because she doesn't---because there are lots of kids and adults like Janey out there, and their lives are valid.  They have lives that people should be able to hear about.  People can learn from Janey.  They can get insights from stories about her life into what it's like to live with a disability that affects the mind, the emotions, the ability to learn.  They can see that she can be a delight, can be amazing, just by being her.  Hopefully, people will realize that a person's worth is not measured by IQ or future earning potential, but that we all have a value.

The third reason, and probably the most important---to support other parents, and to get support from them.  I don't know how I would have lived through the last 5 years had I not met other parents with girls like Janey, had I not realized that I wasn't the only one with a child like her, had I not gotten the hope that comes from hearing there is indeed a bit of light at the end of the tunnel.  I know there are girls (and boys, but there is less out there as a support for girl) being diagnosed with autism every day, and not all of them are like one misguided book about girls on the spectrum made them seem, very verbal with unlimited futures.  The media tends to focus on girls with autism that are misdiagnosed because they seem so "normal".  But I know there are a lot of girls like Janey, that will probably never pass for what society calls normal.  And there are a lot of parents that love those girls, but are starting out on a tough journey, one filled with crying and screaming and sleepless nights and frustration.  I want to tell them I know how it feels, and I also want to give them hope---not false hope that says "one day your child will be cured, if you do everything right!" but hope that you will still have wonderful moments with your girl, that she will bring you happiness, that one day you will have a time when you think "I wouldn't want her to be anyone else"  And then she will scream all night and you will lose \that feeling for a bit, but it will come back, here and there, and that's enough.  If I can give one parent that message when they need to hear it, that's enough too.