The days it all catches up to me

Once in a while, I have a day like today.  Today, I just couldn't get anything done while Janey was at school.  I napped.  I watched a little TV.  I sat mindlessly at the computer.  I made myself do the things I had to do.  I got Janey ready for school and took her there.  I mailed some packages.  I folded some laundry.  But beyond that, I felt like I was dragging around a huge weight.

I imagine this is depression, in a way.  Janey is having a medium-tough time lately.  She's been doing some things like scratching herself and biting the place on her arm she likes to bite, and she's been doing a lot of screaming.  She has been sleeping somewhat irregularly---not as bad as it's been, but not good.  She is not talking much, and when she does, she's running the words together, so it's hard to understand her.  She has not gotten over Kipper being taken off Netflix, although we found it on Amazon, but she can't quite access that on her own.  I haven't seen a lot of smiling lately.  I haven't seen my happy Janey in a bit.  And it all wears me down.

I tell myself, and I know in my heart, that most any mother would have days like this when dealing with a child with serious disabilities.  But when the weight comes over me, I don't think completely straight.  I don't tell myself to just let it all go for a day, to give myself a day to just feel it.  I feel angry at myself that I can't get things done.  I feel like a failure for my lack of energy.

I say this all not to just be a downer, but to talk to others out there that I know, from the years I've been writing here, feel the same way at times.  I am going to try to give myself permission to sometimes feel overwhelmed.  I'm going to try hard to accept that some days are going to be given over to feeling what I honestly feel---overwhelmed, discouraged, scared, tired.  The internet isn't always a welcoming place to such feelings.  So many blogs, advice pages, news articles---they are full of solutions, of ideas, of forward motion, of encouragement.  And that is great.  There are days I need that.  But some days, I think I need to accept that being Janey's mother is a very tough gig.  And if you are reading this and you are also struggling with negative feelings---let's make a pact to just let ourselves feel them, once in a while.

Really, Parade Magazine, Really?

A few days ago, I saw a link to an online article from Parade Magazine---6 Great Toys for Children with Autism.  As I'm always on the lookout for toys that might engage Janey, I gave it a click.  Immediately after reading the article, I was so annoyed and upset that I told myself not to write about it until I'd given myself a few days to calm down.  Well, it's been a few days.  I guess I'm not quite as upset any more, but I still am pretty bothered the article.

What's my issue with it?   On a minor note, it bothers me because it feels slapped together, like someone said "Autism is BIG right now, and it's April, autism awareness month!  Let's get an article about autism that is upbeat, stat!"  But my big, major note issue with the article is that it completely and totally assumes every child with autism is high functioning.  

Here's a few quotes--- " As children get older, more complex board games like Boggle, Scrabble, checkers or chess are terrific"    Oh, yeah?  I can't wait until Janey gets a little older and can play Scrabble or chess!  Wait, I forgot, we are living in Realityland here!  Janey is NEVER going to play Scrabble.  I shouldn't say never.  It's highly unlikely Janey will ever play Boggle or Scrabble or chess.  It's highly unlikely she'll ever play Candyland, the game mentioned as being "simple"  Sure, these games might help her with her social communication, as the article helpfully suggests, but that would be assuming she was able to understand them.  And assuming she didn't put the small game pieces in her mouth.

Here's another quote...“It sounds almost too simple, but just a toolbox with a hammer, nails, and a screwdriver can be a great inspiration for play,” says Whitney. “Using tools not only builds fine-motor skills, it also builds a sense of accomplishment when kids can create something they’re proud of.”  Uh, okay.  Why did I never think of that?  I've got to get Janey some nails and a hammer right away.  I'm sure she won't use the hammer to break the TV, or put the nails in her mouth, because she'll be feeling so proud of that castle she's going to build!

And here's a 3rd and final quote, although I could quote the whole article, really...“I’m a huge fan of technology, but I also think it needs to be balanced with other activities that help promote needed skills. So maybe it’s an hour of computer time in exchange for an hour spent playing outside with a friend.”     This one maybe bothered me the most, because it's almost on.  Yes, the iPad is great, and yes, it needs to used in a balanced way.  But the part about an hour outside playing with a friend?  That almost felt cruel.  First of all, Janey doesn't have friends.  She has school friends, that are her friends because we call them her friends, but she doesn't have friends she could dash outside and play with.  If she did, I would still need to be right next to her, to make sure she didn't run away, or eat random things off the ground.  It sounds idyllic---go outside and play with a friend!  But it's not reality.

The article wouldn't bother me as much if it was only Janey it didn't understand.  I certainly don't expect every piece of parenting advice to apply to Janey.  But I would guess the suggestions there would not work for MOST kids with autism, including not only almost all the low-functioning ones, but most of the high functioning kids, too.  It's a perfect example not getting that autistic kids are not just quirky regular kids, kids we can mildly modify regular advice for.  

Parade Magazine is hugely, widely read.  If you didn't know much about autism, and read this article, you'd, well, still not know much about autism.  Or you'd get a picture of a very small percentage of the autistic kids out there.  You'd wonder what the big deal was.  Get them some good cooperative games, maybe a zip line or tennis lessons, take them to a building workshop at Home Depot, have them read a few books that teach socially appropriate behavior, and they'd be fine!   If the article had even ONCE included a note that not all children with autism could access the toys mentioned, that a good percentage of children with autism are also intellectually disabled and require constant supervision, I'd have been fine with it.  But it didn't.  It addresses the imaginary world of autism, one filled with brilliant, slightly different but at the core just the same as you and me, future so bright you've got to wear shades autistic kids.  I don't have that model.  I have a real life autistic kid, my amazing Janey.  And we'll stick with toys that she actually can use.

What causes autism? And does it matter?

Well, of course it does matter, but by that, I mean does it matter to children and families already living with autism? It certainly matters to those future children who could potentially be prevented from becoming autistic if we knew what was causing it, but in a lot of ways, it doesn't matter much to Janey, or to me, in terms of our day to day life.

That's not to say I don't wonder, but I can't say I think a huge amount about it. That's been hard lately, as every single day, it seems, there's a new article out there with a new potential cause. They can't all be right, or maybe they can---I do think autism is caused in different ways in different kids, and they might ALL be a cause. But that leaves more answers than questions if it's true---which one caused MY child's autism? And it opens up the feeling that I think probably almost all parents of a child with autism have had---"it's my fault somehow" I know rationally it isn't. I don't take the credit for Janey being so beautiful, or my sons being quite the bright guys, or for William being musical or Freddy being a good actor. I don't take the blame for Freddy's health issues or any character flaws either of them might or might not have. So it stands to reason I shouldn't take the blame for Janey's autism, and in general, I choose not to.

But the list goes on---genetics, vaccines, older fathers, close spacing between children, overweight mothers, medication taken during pregnancy, mercury, thyroid problems during pregnancy, pre-eclampsia, ultrasounds, low birth weight, lack of oxygen at birth, diet, autoimmune disease, viral infections, brain defects, rain, too much TV, Tylenol...well, a huge amount of things. A fair amount of the list applies to Janey, making me think it would probably have been more of a surprise had she NOT been autistic, almost. But of course that's not the way to think, and it shows the problems with a lot of those theories---why don't ALL kids with those risk factor become autistic? Obviously there must be more than one factor at work in most cases.

If I personally had to guess about the cause of Janey's autism, at the current time I'd put three factors in the most likely list. First is the autoimmune disorder idea. Almost everyone on either side of our family has some kind of autoimmune problem. This goes along with factor two--preeclampsia. I was severely affected by this during my first pregnancy, and was to a fair extent while pregnant with Janey. My third thought is the severe reaction I had to a blood pressure medication I was given at 12 weeks while pregnant with Janey. These three factors all tie together. But who knows, really? I think most of autism is probably like that---caused by an interaction of factors. This is why I try never to get into the fray of arguments about what causes autism. I think everyone is right and everyone is wrong. Some cases of autism probably are caused by vaccines. Some are caused by genetics, some by birth injury. Most by a mix and match list of many factors.

But the end result, no matter how you get there, is autism. It's like the stupid Holland story. No matter why you ended up in Holland instead of in whatever country you were aiming for, you're still in Holland. I'm content to let the research and battle over what caused Janey's autism fight on without me joining in. My fight now is to give her the most meaningful life I can.