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Friday, July 31, 2015

Why I Do This

Recently, my son Freddy read one of my blog posts and didn't like it.  He felt one line in particular wasn't good, when I spoke of how Janey is one in a thousand in terms of her level of needs and disability.  I based that number on statistics I've read of kids at her IQ level and functioning level.  However, Freddy said I was trying to make people feel sorry for me.  That isn't what I was consciously aiming for, and I hope that isn't how it came across.  It kind of horrifies me to think of people feeling sorry for me.  I would hate to think people did.  This is partly just because I grew up in a time and place where you just didn't do that, and partly because I don't feel like I have a life people should feel sorry for.  I have enough to eat, a roof over my head, a husband I love, amazing sons, a daughter I longed for for years, hobbies and friends and interests and books and my garden and so many great things.  Like anyone, I have moments of self-pity, moments I do maybe want people to feel sorry for me, but that isn't why I write here.

But I was left thinking---why DO I write about how hard things can be with Janey and how little support there is out there, if not to make people feel sorry for me?  I had to search my soul a lot on that one.  The answer is---I write about it because it's an experience, a life, that I don't see written about elsewhere.  I don't see the media writing about kids like Janey, kids with the non-glamorous kind of low functioning autism.  Because of this, I also don't think there is a lot of awareness outside of the families with kids like Janey of how hard things can be and how little support there is out there.

There is a debate I've had with myself, and talked to others about---are those with the power to do something to help families like ours just ignoring our needs, or are they truly not aware of them?  I have to believe they aren't aware of them.  They could be excused in this.  Let me give  you an example.  Over and over, I've had people tell me about two different programs.  One is a program at the Boston Conservatory that provides music lessons for children with autism.  They hear about it and think "Wow!  That would be perfect for Janey!  She loves music and is very musical!"  Well, yes.  It would be perfect, except that the program requires that the child already be able to play an instrument and read music.  Janey certainly can't do either of those things.  The second example is a respite care house near here, a wonderful place we did take Janey to and get her accepted into it.  It would be wonderful, with Saturday respite and overnights and all.  However, when we took her there, we realized that the ratio of caregivers to children was no-where near what would be safe for Janey.  She requires a 1:1 ratio, for sure, sometimes even 2 adults to her if you really want to be safe, and they were more like 5 to 1 or 10 to 1.  Not possible.  So---to the outsider, it might seem there are programs and help that would work for Janey.  I want to explain to them that although these programs might be well-meant, and extremely helpful to some kids, they do us no good.

I talk about Janey's difficult behavior here for similar reasons.  I had no idea, no idea in the world, before having Janey, what it is like to have a child like her.  It's a bit of a hidden world.  There are several reasons for that.  One is that most of us living this life are too busy caring for our kids to really get out there and tell our stories.  Another is that we don't want to be negative about our kids.  We love our kids.  We love them so much it's hard to ever explain.  In a way, we love them so much we want to shelter them.  We don't want to let people know how hard it is to raise them.  And so, the stories that do come out are often horrible stories of mothers who just could no longer continue.  Or they are feel-good stories, stories of "cures".  Or they are tragic stories of children who wander away and drown, the stories that are far too common, especially in the summer.  I want to tell the story of a regular, ordinary family raising a child with low functioning autism, an intellectual disability and severe behavioral and self-injury issues.  I want to show that we aren't the others.  We are any family out there, who by the luck of the draw were dealt a tough hand in this one way.

I write because that is what I can do.  Others can do other things.  I am no good at going to rallies, at being a fierce advocate, at raising money, at starting foundations.  I can write fairly well, and I can do so in-between Janey's tantrums (I wrote this interrupted by at least 10 fits of fury from Janey, as she watched videos and became upset by them).  I write to tell our story, and the story of so many wonderful families I've met with children like Janey.  I write to tell people we exist, and to hope somehow to plant a seed in the mind of someone with the power to help us.


pianorox said...

And thank you for sharing your life. I have never felt you wanted pity. You are right that most of the stories/blogs about autism show a different part of the spectrum than Janey and it is very important for the entire spectrum to be discussed and understood (as much as is possible).

Unknown said...

I for one am very glad you write about your story. I can't even remember how I happened upon your blog a few years ago, but I will tell you it has totally changed how I feel and how I act when I see a situation that might be attributed to autism, or any other issue that might not exactly look like what it is on first glance. I have to admit that to a small degree (I consider myself a very accepting person) there have been times, before reading your blog, when I might have had thoughts about how a parent was letting a child get away with some behaviors that I didn't agree with. I can recall one very particular incident in a Barnes and Noble. But now, when I see a situation like that one, I remind myself that this child and this parent might have little to no control over what I see before me. And if I'm with others, I remind them as well. Sometimes what I might be seeing very well may be an over indulgent parent and a somewhat "naughty" child, but even then, I don't know what their day had been like before I came upon them.

So even if I've only helped a few people see things in a clearer light, then a few people won't be so quick to judgment going forward. And maybe (I know I will, not sure about others) instead of judging, might just offer some help if it's appropriate.

And I agree with the other comment, I have never felt like you were looking for sympathy. Although there have been times I wish you lived down the block and I could somehow make your day a little easier here and there.

Suzanne said...

Thank you so much, Amy. Your comment alone will keep me going for a long time! That's exactly what I hope for---that people will realize that there are truly times when parents have no control over the situation, and that they might, if appropriate, offer to help. I know how many times before having Janey I saw situations like ones she now puts me in every day and thought I was seeing bad or lax or at the very least weak parenting. I feel guilty remembering things I used to think! I hope I didn't show what I felt, and I wasn't the type to say what I thought, but I certainly never gave the parents that smile that says "I get it", or offered to help. And thanks to you and pianorox for saying I didn't seem like I was looking for sympathy! I asked my son before writing this post if he minded if I included what he thought, and he said he didn't. I very much hoped I wasn't coming across that way!

Mary Leonhardt said...

Yes, Suzanne, you do sensitize people to the severity of low functioning autism--a huge achievement. But your blog does so much more. By recounting your experiences, and by showing the many, many different, creative ways you and your family love Janey, I think you blow a huge, gaping hole in all of the theories and techniques for teaching autistic youngsters. I do wish that somehow you could become a teacher for special ed. teachers.

grammacello said...

Suzanne, you are at pains to explain that you are not looking for pity, to an extent that is probably unnecessary, given how clearly you are not. My Matthew has sometimes " disapproved" of something I have said in a way that is off the mark, like Freddy has. It is indicative of the wonderful relationship you have with your sons, that they care about this sort of thing and feel free to express it but he is not you or in your shoes, despite how close he is to the situation. Kids at this age know a lot more about life than they will in twenty years! Please do not fret- you are if anything, at pains to underplay these difficulties, if anything. Take Freddy's remark in the spirit it is meant but please do not take it to heart! Your friends here are not judging you ever, at least this one isn't!

Sabrina Steyling said...

I for one truly appreciate your writing, Suzanne! I have learned so much from reading your blog. I have come to know your family better, and to "see" first hand what having a daughter like Janey is like. Your feelings are palpable through your writing, but let me just say that even when you write about the not-so-pleasant moments, your love for Janey shines through all of it! What matters is that you love her.