Wednesday, October 31, 2012
Wednesday, October 24, 2012
Tuesday, October 23, 2012
|Photo by Seth Jacobson Photography|
Monday, October 22, 2012
The stories posted here are absolutely true, but I altered some potentially identifying details - including my own - for obvious reasons.
Tuesday, October 9, 2012
So, my humanoid life partner and I have been trying to create another human larvae for a while now. We've tried this, method and that until I finally threw up my hands and shouted FUCK IT! and sold all the baby stuff. Ok, I kept the pack-n-play and one tub of sentimental stuff--BUT THAT'S IT! I stopped taking my temps, barely pay attention to my calendar, and ignore all my body symptoms because my body is a big fat liar-head. SCREW YOU HORMONES!
I'm over 40 (BARELY! my vanity screams) This shouldn't come as a surprise. It is completely natural for the baby-making machinery to slow its gears and grind to a halt. We're not on the official halt yet, and I'm too chickenshit to get my blood drawn to find out if it's even started. But I think I've accepted that this sack of bones and water prolly ain't squirting out another critter. And I'd love to say I'm ok with that. But I'm not--and I'm lying everytime I tell people that.
Infertility is like...well...it's like Mr Rochester's crazy wife in the attic. As much as I can PRETEND its not an issue, occasionally it comes down and tries to set fires and terrorize the help.
(and if you don't get that literary reference, well, your teachers obviously did not appreciate the canon.)
I've got a kid, people remind me. A kid that needs my attention. Most of the time. He is pretty high functioning, and I don't bitch about our issues much anymore, only because I feel like a whiny little white girl in the face of Autism parents with MUCH bigger issues. I'm not dealing with meds, or vicious cycles, or non-verbal or even potty issues anymore. He's just a kid in special day with his own set of quirks, that we accept or work on, depending. I've got a husband at home who is actively involved. I've got a college education and a smart mouth that make IEPs a little less daunting. My day is a fucking CAKE-WALK in comparison to my friends--and I get that.
There is that part of me that wants to have another kid, that, maybe, doesn't have these issues. And every time I think that, I feel like my parenting license should just be fucking REVOKED. That my kid deserves a mother 127% better than me for even thinking such a horrid thing. And I think it must be karma shutting down the fallopian highway because I obviously don't deserve to have another kid if I can't fucking appreciate the one purely awesome kid I DO have.
Oh, Bertha--why do you torment me so?
As I write this I'm on day 24 of my cycle--because I still keep track, for all my nonchalance and disinterest. And all my PMS symptoms mimic pregnancy something fierce. And there is that teeny-tiny voice from who-ville whispering "maybe?" And I wish with everything I have that I could just boil that voice in Beezle-nut oil and be done with it.
But I can't. And next month? I do this dance all over again.
Who needs a rabid right wing? I've got my own war on women right here.
Monday, October 8, 2012
I mentioned to her that my wife would be following the bus when it picked my daughter up from daycare and trailing it to her special preschool. I said it conversationally; just between us guys. She looked vaguely affronted and said, "It's illegal to follow a school bus. She can't do that!"
I shrugged my shoulders and said, "It's not like we're going to make a habit of it. She just wants to see that she gets to school safely, and understands the route."
"She can't do that," she repeated.
Annoyed, I defended, "It's hard that first day leaving your child in the care of a complete stranger and just watching them drive off, you know?" I should have known better. This is why women didn't relate as well to Sister K. She didn't know.
Men are embarrassed of their feelings, and can be bullied by this, accepting things we might not because we refuse to let our emotions master us, the way we imagine they master women.
"We haven't lost a child yet," she said meaningfully, a "look, what are you all panicked about" sort of statement.
Suddenly I was annoyed. "Yeah? Well I don't want my kid to be your first." I tried to reply evenly, but I suspect it came out clipped and terse.
"The drivers of these buses undergo extensive background checks before they're cleared to drive school buses."
I raised an eyebrow in disdain, but didn't say anything else.
My daughter is practically non-verbal. She says words, even has a decent vocabulary, but yes/no are used interchangeably and she only answers direct questions sporadically. She is, for all intents and purposes, "non-verbal".
"Are there any kids on the bus who ARE verbal," I asked the pre-school teacher?
One day the bus driver gave her candy in her backpack. It seemed weird. Was he this nice with all the kids? I shrugged it off.
I met her bus driver, M, a few months into the route. I tried not to let his physical appearance bother me. Matted hair and patchwork beard framed an over-wide face. Coke bottle glasses magnified eyes that were slightly off-kilter. He was missing several teeth. It shouldn't matter what he looks like. He seems to genuinely like my daughter.
He offers to babysit her if my wife and I ever need someone to watch her while we're away.
The daycare teacher approaches my wife one day and says, M is counting down the days until your daughter's birthday.
"Does that seem weird? It sort of seems weird to me."
"Yeah, it is sort of weird."
Nobody tells us the day of the incident. There's paperwork to fill out. Questions to ask. The parents are to be notified after the preschool understands better what happened. We hear about it from and aide. The special ed teacher isn't there that day. We ask for more information, but everyone is gone. Nobody is in town, but it's really important that we figure out what the fuck just happened so we call the teacher's personal cell phone number. She doesn't answer.
My wife is going to the hospital the next day for a treatment. We can't stop thinking about "it" even though we really don't know what "it" is beyond this: M has been reported to the bus company by the preschool because he was sitting with one of the students on the bus when the teachers came out of the school to gather them and escort them inside.
"Which student," we ask, but we already know the answer.
In the absence of any kind of feedback, we talk to a friend, a police detective. We give him a name, we explain the situation. He says to us, "everything you just described is a red flag for a sexual predator except one. Usually predators don't engage the parents. They try to distance themselves from the parents."
We don't feel any better. He says he'll look into it. We feel a little better.
While my wife is being treated in the hospital the special ed teacher calls me. This isn't the first time they've complained about M leaving his seat.
"He is not to get up and go back with the children under any circumstances," she tells us. He has been given notice. This doesn't make me feel any better. We receive more information. It's not enough. He was sitting with her. How long? We know how long the bus route is. He's been getting to the school early. The preschool has complained that he's arriving too early and the children are sitting out on the bus until they show up. The daycare tells us when the bus picked her up. My wife knows the route, and is satisfied that they can't have been on the bus in parking lot for more than a few minutes. The preschool agrees. How long was he sitting with my daughter?
I'm intensely concerned. Very worried. Heartsick. But also guilty. What if he's just a nice guy who happens to love children. I can't get his appearance out of my mind. I feel guilty again. He can't help how he looks. He can't help that he "looks like a pedophile".
Fuck him, I decide. We complain to the bus company. He's moved off the route. The daycare and preschool are instructed that under no circumstance is our daughter to get on any bus he is driving. I feel guilty all over again, but I cannot fully satisfy myself that this man belongs on a bus full of non-verbal children, least of all my daughter. An aide is assigned to ride the bus. Why wasn't this done to begin with?
I don't think anything happened. I don't know, but I don't think so.
I read the headlines. I hear the stories. This shit happens all the time. Whether it's the driver, or the aide, or the kids on the bus. . . this shit happens way more than should ever be allowed in the sight of god and man.
All you have to do is type "autistic abuse on bus" and watch your monitor fill up with a demon's resume of reprehensible shit that human beings inflict on other human beings because "they can" and don't think they'll get caught.
From "Sexual Assault Statistics"
Among developmentally disabled adults, as many as 83% of the females and 32% of the males are the
victims of sexual assault.
Women with disabilities are raped and abused at a rate at least twice that of the general population of
From "64 Facts about Child Sexual Abuse":
Child molesters come from all backgrounds and social classes. However, most molesters (1) are male, (2) work in an environment surrounded by children, (3) befriend the parents first and then gain the child’s trust, and (4) attend events such as sports, camping, and video arcades
In the United States, approximately 1 out of every 4 girls and 1 out of every 6 boys is sexually abused.
From "Statistics: Child Sexual Abuse"
Children with disabilities are 4 to 10 times more vulnerable to sexual abuse than their non-disabled peers.
Men are quick to discount. At the risk of speaking for my gender, I know I am quick to discount. Arguments appealing to the absurdity of the situation take root in my mind and prickle my pride. . . I don't want to be made a fool of. Everyone ELSE is trusting this. . . why am *I* "that parent". Do I really want to be "that parent?"
For anyone who is quick to discount the possibility that something bad could happen, read the statistics above. It's almost a fucking guarantee.
For anyone who nods apologetically to Sister K at the absurdity of his/her own paranoia. . . read the statistics above.
If you ever feel embarrassed or silly or. . . just exhausted at the idea of "being that parent". . . read the statistics above.
Those are just snippets.
I caught so much hell from the district getting a camera on the bus
(after the fact). You feel stupid fighting so hard. Everyone is so
reasonable. Why can't I just be reasonable like everyone else? I
guess experience. . . and statistics.
Get an aide. Get a camera. Be a pain in the ass. Shame yourself with your paranoia. Chip away at the statistics. Limit your child's risk.
BE. THAT. PARENT.
Thursday, October 4, 2012
How I wish you would listen. How I wish you would try. How I wish you would care more than you show.
I know that a lot of things in your life were not easy and that’s because of me. I was born when you were just a child. Sure you were just out of high school, but a child nonetheless. You decided to marry far too young to escape something – something that seemed to stifle you but that I’ll never understand. You were a model mother for years to the outside world, even though we walked on eggshells around you for fear of your wrath.
I forgive you for that.
Then came the day that you rediscovered him – a long lost love - and you wanted nothing to do with the life you had before. You wanted to be with him and not with the person with whom you made both a child and a commitment. You kept me away from my father – the person I was closest to – because of your own desires.
I forgive you for that.
Your life became more and more about you. I grew up with the assistance of other family members who took me under my wing. You were emotionally abusive to me, threatening to take away love and affection if I did not do as you said or take your side. You told me that I should be grateful that you did not turn me out – that you provided me a roof and food – despite the fact that it was what parents do. All I wanted was your love. Instead, I felt fear.
I forgive you for that.
When my son was diagnosed with autism, I needed the support of family. Instead, you berated me – made me feel like I had betrayed you – because I needed everyone, including my father. I needed you to understand what my world had become and what I needed to feel whole. You couldn’t get past your own feelings to see what I – your daughter – needed. You still can’t.
For what you do to me, I forgive you for that.
However, you then seemed to write my boy off. I didn’t suffer from having the family that didn’t believe he was autistic – everyone saw it – but I suffered a pain far greater than a lack of validation. Instead of putting forth the effort, instead of trying, instead of treating him like a person, you simply seemed to think that you wouldn’t have any relationship with him. He has been ignored and cast to the side.
I’ve begged you to try. I’ve begged you to see the absolutely wonderful person that he is. I’ve tried to educate you so that you would be willing to make simple accommodations for him. I’ve tried to teach you about autism so that you wouldn’t take it so personally when we can’t take him out to dinner or when he has a meltdown.
Instead, what I’ve been met with is accusations that I haven’t done a good enough job teaching you what to do. I’ve been accused of using my son’s disabilities as excuses. Instead of listening, watching, and following the model that I set for you, you look to blame someone else. You allow my siblings to do the same. You’ve made me feel like we are somewhat less because of the world – the autism community – that we find ourselves residing within.
I’m not sure I am strong enough to forgive you this time.
You see, this is no longer about me. It’s about him. He deserves a circle of support and of people who will genuinely try to include him in their lives. For lack of a better word, I am pissed as hell at the way you treat him with a general sense of neglect. I am pissed as hell that you allow and defend the way that my siblings do so.
The truth is, I want so badly to forgive you – for everything. You are my mother and I want nothing more than your approval and affection for both my beautiful little boy and me. I can’t understand why that is so hard for you to give.
So, I’ll ask again – please see the beautiful, delightful child before you. Instead of seeing a relationship that will never be what you imagined, see the possibilities. See that he is worth the extra effort – because he is – and take the time and energy to get down on his level. Sit with him. Be with him when he seems self-absorbed and closed off. You see me do it. Make yourself a part of his world.
I’m not going to ask you to do it for me, because you’ve never been willing to do that. Instead, do it for him. Ultimately, if you don’t, you are the one who is missing out on the absolutely wonderful and inspirational person he is.
You’ll also miss out on who I have become. You’ll miss out on the growth that I’ve made, the voice I’ve gained, and the strength I’ve found all in the name of my boy.
I hope that, someday, you’ll see it. I hope that you’ll see what you’ve missed in the absolute pursuit of your own desires and misguided ideas. I hope that you’ll try to be a part of his world sooner rather than later. I hope you’ll try. I also hope that you’ll end up being the mom that I’ve wanted you to be.
With all the love in the world regardless of what you give back,
Wednesday, October 3, 2012
Tired of people who know nothing about my life telling me that I’m doing it wrong.
Assuming that they know what I’m going through.
Telling me which words to use.
Trying to sell me on a therapy or cure they just read about.
Thinking they know what’s best for my kids.
Making me feel excluded from a club.
No, I’m not talking about parents of neurotypical kids. I’m talking about the online autism parenting community.
Sure there’s nothing like the support that comes from discovering that other people are going through the same stuff that you are. To find friends and comfort and advice from someone who could have stolen the words right out of your mouth. But there’s more to a community than sharing cartoons of retro housewives with pithy quotes in a cool font.
A community should be a place where people feel safe.
Safe to express opinions.
Safe to share experiences.
Safe to make their own choices.
Safe to change their minds.
Safe to rant on a bad day.
Safe to enjoy a good day.
This community doesn’t feel safe, and some days I want out.
There’s a not-so-silent war raging across autism blogs and social media, and it has nothing to do with funding or awareness. Parents who speak their mind are being attacked no matter what their stance - those who admit that autism sucks are ‘insensitive’, those who embrace acceptance are ‘unrealistic’. Low-functioning vs high-functioning. Autistic vs person-first. Jenny McCarthy vs science. There's no room for disagreement, no spectrum of opinion allowed. Whether you contribute via your own blog or comment on someone else’s, it’s becoming almost impossible to speak without upsetting someone, no matter how benign the topic.
For a group who seek tolerance... why are we so quick to turn on each other?
Yes we’re all emotionally raw, frustrated and tired as hell. Advocacy is our life and that probably makes us a naturally opinionated bunch. But why can’t we seem to agree to disagree?
Because somewhere along the way the focus seems to have switched from providing mutual support to sending a unified message. There’s pressure to share a single view of autism with the world, and in the process our opinions are not ours to own - they belong to Autism and therefore must represent everybody. We’re not allowed to describe what life’s like for us, at the point where we’re at or where our kids are on the spectrum, without others jumping up and down and yelling “you don’t speak for me!”
So instead of a strong and supportive community we’re fighting amongst ourselves to be heard. To become the one true voice that we never needed in the first place, because there is no unified experience of autism.
I want to be part of a community that feels safe. I want to have intelligent conversations about what works and what doesn’t and why it’s hard and how not to go insane without having to wade through political bullshit or feel like I’m stepping on anyone’s toes.
I don’t want to feel afraid to ask for help from the only people who can give it to me.
I want to want to be here.
Tuesday, October 2, 2012
I called it The "A" Word
There's this word. It might mean everything. Mostly it means nothing.
It's like the "just not right" of our generation of parents. Which is obviously a dumb phrase that's pretty much useless.
You think to yourself, that dreaded word doesn't mean OUR stuff -- I mean, we've got some stuff going on, don't get me wrong -- but that word isn't for OUR STUFF. Then you can't find any other words to describe your own specific bag of issues, problems, sensitivities, activity choices. So you try the word on for size.
The word feels like crap. AUTISM. It's a really lousy word.
However, it would seem it's the only word some of us get. There are some other labels that get you some of the way there: "on the spectrum," sensory processing, sensory integration, ADHD, shy. Gosh, those other labels sure feel a lot less itchy and ill-fitting. They work for a lot of other people and I sure hoped they would work for us.
Unfortunately, as the process (of survival, of diagnosis, of picking words and phrases to call things) continues, these words lack the oomph and the ability to convey the depth of the, ah...., the....um, situation.
There's this word: Autism. Sometimes I have to use it. But that doesn't mean I don't still hold back tears.