Sunday, August 28, 2011

Can you live with half a heart...?

This week Billy and I cried together. When I say 'cried' I mean streaming floods of ugly face tears, both of us. When I say 'together', I want to start crying again.

I'll delve into the why of the tears in a minute, but I want to quickly divert into the togetherness part.

I'm not sure how, in almost eight years of Mummy-dom, I missed the fact that Billy really struggles with empathy (in the NT sense). He has always reacted really strongly to peers being upset. I took that to mean he was empathising. He always looked so worried, and worked hard (if he was close enough) to calm his friends down.

This week, I realised those reactions were driven by self preservation, first and foremost.

The longer we live in autism world, the more profound the effect of the hyperacusis on Billy's being. When  his friends cried, he was trying to make them stop, to make the sound stop. Not to make them feel better, but to stop the sound hurting his ears. This week, when I cried, I cried quietly - in Billy's full view, but quietly. Billy knows I will do most things quietly around him, so he does not fear I would wail and send a wave of sound-pain through his body. He has no fear of me, and he has no empathy for me. He did not react at all to the evidence that I was sad.

Maybe he is unfamiliar with my sadness. It's certainly the only time I have let myself cry in front of him. And yes, half of you think, 'hey, kids need to see all kinds of emotions' and half of you think, 'jeez, pull yourself together lady' and to all of you I say, 'Yeah. Whatever. I'm doing my best. Sometimes I make the wrong call.' To be honest, I haven't had much cause to cry in Billy's company (outside of hospital rooms) in his life. The sadness is 'big picture' stuff, best chewed over at 3am when I'm in that optimal mental state for thinking about the future (yeah, right...)

But last week, while I cried, he looked at my face, covered in tears, through his own tear stained eyes and registered a big old nothing.

The reason for all these waterworks? The dog. Noise. And how we handle the former's need to make the latter.

Scruffy is an awesome dog. He has learned not to bark in most circumstances when a dog's natural instinct is to let loose. Not when he sees birds or possums. Not when he sees another dog. Not when he's in the back of the car with the window open and his tongue lolling out. The one and only time he barks is when someone comes to visit. Briefly, but loudly. He is 35kgs of long white hair. Not a small dog. His bark is enough to scare the be jiggers out of a serial killer. Unsurprisingly, it turns Billy into a puddle of goo. And not happy, Hallmark style goo. Screaming, crying, on the edge of self harm kind of goo.

This has got a LOT worse since we started the drug regime for his gut. A lot. I have no idea what that means. The drugs make him vomit cyclicly (is that a word? It looks like a name for an insect) but I have very little hope I can convince the GI doctor that they effect his hearing/mental state as well. This is a man who took my statement 'Billy does not eat dairy' to mean 'Autistic Billy has an autistic behavioural aversion to dairy'. I'm getting the feeling he's not quite on the A Team (if you get my drift).

I would go so far as to say, we could handle this before the gut drug regime. But right now... oh boy. We are not handling it well. Any of us.

All the dog has to do is sigh, and Billy is weeping and reaching for the headphones. If he actually barks, it's a whole other story. A frightening story. Billy goes to a place he has never been before, at least not in my presence (and that's been 95% of his life pretty much). He has started screaming hysterically... horrible high pitched horror movie ingenue style screaming. Often in the foetal position. Always a precursor to tears, and running away. If the door was open, he would be gone. If there was a busy road between his hysterical self and salvation, he would not notice.

Awesome, huh?

So why am I crying? Well, here's where I welcome you into my own world of odd adjustments. I'm crying because my kid is struggling, for sure. It takes its toll, and some days it's just plain hard. But, as I said before, I can usually hold it in until I am (at the very least) out of his eyeline. Driving the car is a favourite time to let it all drip out, slightly dangerous to other drivers, I admit but I'm sure I'm not alone. I also like arguing with phantom people in the car, pretending I'm talking on the bluetooth to someone. It's amazing how many conflicts you can settle when the other party isn't even present.

But, I digress.

I am crying because Scruffy is my second child. My alternate child. And no, I am not someone who treats my dog like a child. He does not own clothes or eat chocolate or have his own room.I am someone who subverts my desire to be nurturing a tribe of children by having another being who needs my care. I enjoy the responsibility, I love the faith he returns in bucket loads (I did say he was clever, but  you understand those buckets are metaphoric, right?)

I may be truly lame in admitting this out loud (as it were), but I love to be needed. I like having a purpose beyond my work. I enjoy the emotional learning that comes from love. It's just that some days it rips strips from my heart.

And last week was one of those days. Those weeks. We had one of those days. Whatever (it's sad that my job is writing and I can't get that straight in my head). I need to get me some filters before I am unemployed as well as tribe-of-kids-less.

Last week, I felt angry at autism for the first time in a long time. There are lots of other good reasons why we only had one child, but the guiding one was the effect babies had/have on Billy. It's very much like the way barking effects him now. That's no way for a child, who already has a bunch of challenges, to live in his own house - everyday. Now that we have been told his hearing issues are physiological at their root, I feel quite reconciled in that decision, because, 'No, Virginia, he will not grow out of it/get used to it. Possible surgery, when his ears are fully grown is the only chance he's got.'

We could not risk losing our boy any more than we had already. And so we did not try for baby number two or more.

I give you that one, autism. Because I have to. Because I respect you enough to work around you. What stinks is that you now are threatening to take my slightly hairier son away too. I'm not letting you win this one, because I need the dog. We need the dog. But I need the dog.

This once, I need to put my own needs in the front of the equation. We'll do more training. We'll get a dog walker to further amuse the dog out of barking (OK, it's a long bow but we can only try. Two walks a day can only be fun, right?). I'll try anything.

I cried because I'm sick of giving stuff up. We've bent ourselves like pretzels around this damn disorder, often to the detriment of our adult lives. And I can suck most of that up. I just need to keep my dog. I need the dog love. Never mind all the great things Scruffy has done and continues to do for Billy - the companionship, the language, the chomping of toys (therefore necessitating the purchase of new ones).

As I type, the dog is at my feet, actually lying his head on my feet. Staring up at me. Snuggling in a little closer each time I look at him. Which, given his bulk, is actually a little disabling. But, I'll give up temporary mobility for this. I'll give up a lot for the many, many benefits this dog brings all of us. I just don't want to have to accept that my child's physical and mental health is damaged by his presence.

So, autism, bugger off and let me keep my heart. At least half of it.

I do not want to be forced into being a crazy cat lady. I'm close enough, without the cats.


Mich9 said...

Oh (((((((Valerie))))))). <3 <3 <3

Dearna said...

That hurt to read Val.You have to keep the dog.I hope it works out.

Di said...

Oh no Valerie, sad :(

Lisa said...

What if you hadn't twigged to Billy's hyperacusis before having another child? And what if that second child was, just by nature and personality, loud and fast and unexpected and, oh everything that upset the first child?

And during the 3am thinktanks you actually considered splitting the family in two, so that at least each child would have a calmer life?

Dana Meijler said...

Oh Val, my heart is breaking for you and for Billy. But you have to believe that you will find a way to sort this out that doesn't involve not having your dog. Give it a little time --and some sleep. Sleep always helps.

Katherine Lyall-Watson said...

Sending so much love to you and your family, Valerie.

I've forwarded your Dr House post to the closest person I know to a House, in the hopes that it rings some bells for him. Can't bear to think of the pain you're all going through.

Give Scruffy a big cuddle and cry as much as you need to. There's no shame in crying in front of your kids.

Anonymous said...

Someone was just telling me a few days ago....
some people de-bark their dogs.
I thought the idea was pretty horrible, but maybe it would help your family.
I think the remaining bark sounds a bit like a cough. Maybe that wouldn't be tolerable for Billy either.
But it's another option.

Miz Kizzle said...

Please don't have the dog de-barked. It is cruel and risky in terms of possible adverse reaction to anesthesia and infection, not to mention the psychological trauma of having his voice taken away.
Keep the dog and love him. Billy will have to deal with occasional barking; you can't make the world silent. There is some evidence that repeated exposure to an irritant eventually results in desensitivation to said irritant.
In Billy's case, who knows? His medical issues are staggering. I hope you can find a few doctors who are intrigued enough and determined enough to invest the time to finding out what's causing all the freaky stuff instead of giving up. I suspect a prejudice against autistic kids lies at the root of their apathy. The may be thinking, "This kid is never going to find a cure for cancer or win the Nobel Prize, so why try too hard?"