Here's Bane #2:
Thursday, February 28, 2013
Monday, February 25, 2013
Don't blame me, blame the cat parasites!
I had some blood work done by my doctor last week. Since my cousin died, I've been paranoid that there's something wrong with me that has just yet to be diagnosed, so I went in there and said "Take ALL THE FLUIDS!" It turns out that she can test me for stuff but it's more likely, given my family history, that I'll be taken down by breast cancer or heart disease, and these things aren't likely to turn up in a regular old "take my fluids" type test, but whatever. I have insurance, let's do it.
Not surprisingly, there is nothing wrong with me. Psychologically, yes, but nothing of importance showed up on the blood work, anyway.
Nothing, except.... I tested very high for having antibodies to Toxoplasma gondii, which is a parasite normally found in cats.
"Cats?" you say. "Why would you have a parasite normally found in cats?" "Oh, you must be new here," I answer. Here. Read these:
- I hate cats.
- More about cats
- Hey, Jill.... whatever happened to that cat?
- Things I Find In My House 9
Apparently up to a third of the population has this parasite, but it mostly just sits there doing nothing (as far as you know) and is only really dangerous to your physical health if you're pregnant or if you have a weakened immune system. You get it from emptying the litter box, or I guess when your cat shoves his asshole in your face for you to closely inspect. You know... like they do.
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Artwork by Allie Brosh. OF COURSE. |
Typically, the parasite is shit out by the cat and then rodents scavenge around (ew) and pick it up from there. Once inside the mouse, the parasite needs to return to the cat in order to complete its life cycle, so it fucks with the mouse brain and makes it think that the cat isn't really as scary as it actually is. So the dumbass parasite-infected mouse gets closer to the cat, thinking it's his new cat buddy, but man is he wrong, and BOOM! He's cat dinner, and the parasite get to go back home.
And that's how Toxoplasma gondii is supposed to work. But what happens when it gets into the human brain? Well, scientists don't really know, actually, but they have done studies and they've found that "males who had the parasite were more introverted, suspicious, oblivious to other people’s opinions of them, and inclined to disregard rules. Infected women, on the other hand, presented in exactly the opposite way: they were more outgoing, trusting, image-conscious, and rule-abiding than uninfected women." Other studies have shown an increased risk of suicide and, um... neuroticism.
Dude, I've been neurotic my whole fucking life, I don't need a cat parasite to make that happen. In the meantime, however, I've decided to play the "Toxo Card" whenever I can. What's that, kids? Did I forget to make you dinner? Well, it's not my fault; I have cat parasites!!! And oh I'm sorry, officer. Was I dancing in the street, naked, singing Rolling in the Deep at the top of my lungs? That wasn't me singing, that was the Toxoplasma talking! I can't be held responsible for my actions, man, after all.... MOTHERFUCKING CAT PARASITES!
Dude, I've been neurotic my whole fucking life, I don't need a cat parasite to make that happen. In the meantime, however, I've decided to play the "Toxo Card" whenever I can. What's that, kids? Did I forget to make you dinner? Well, it's not my fault; I have cat parasites!!! And oh I'm sorry, officer. Was I dancing in the street, naked, singing Rolling in the Deep at the top of my lungs? That wasn't me singing, that was the Toxoplasma talking! I can't be held responsible for my actions, man, after all.... MOTHERFUCKING CAT PARASITES!
I am a feminist
Society may think that I need its protection, but society is wrong. I don't need your laws protecting my vanity; protecting my womanhood. I can protect myself. Your well crafted, media tested talking points do not speak for me; I can speak for myself.
I am responsible for the choices that I make and the things that I say and do. I will choose what I eat and drink and what medications I take. I am in charge of what I look like, what I wear, how I act, and in the end, I take ownership of the consequences of all of my actions.
I will raise my children as I see fit, and I will own my body in all of its fleshy glory, and I will fuck my husband, while using birth control, and not be ashamed of any of it.
I don't care if you call me a slut, a bitch, a whore, or a cunt. Saying those words might make you an asshole, but they don't affect me in the slightest. Those are just words and your words don't define me: I define myself.
I am a woman, and I am not a victim of men. I am responsible for myself; for my own feelings, for my own sense of self worth. For my own life.
I am a feminist and I am proud to call myself one, because this is what feminism means to me.
It means that I am not weak.
It means that I am not a victim.
It means that I am a woman.
Autism Parents: Common Myths and Misconceptions about Moms and Dads Raising Kids on the Spectrum
I'm proud to say that I contributed to this post, written by my friend Jo Ashline, on the various myths and misconceptions about parents who have autistic kids.
Go! Visit! Say hello from me!
Go! Visit! Say hello from me!
Saturday, February 23, 2013
The Dive Bar Welcomes: Anna DePlume
Just a reminder that I don't write Dive Bar posts. People tend to get confused by that. For more information about this series, click here.
I signed the papers, defeated, and followed the nurse through a maze of elevators and stairs. When I arrived the door buzzed and locked behind me. The staff rifled through my bags, took the drawstring from my pants and my cell phone, gave me some grippy socks and offered me dinner. I didn't want dinner. I wanted to call Ed and tell him I'd made a horrible mistake, that he was right, and beg him to come rescue me from that place. I didn't perhaps out of fear, or spite.
Today's contributor asked to be identified only as Anna DePlume. Please show her some love!!!
Loving (and hating) Ed
I have a friend named Ed. He is, by far, the most compelling entity I’ve ever
encountered. Ed believes that purity is perfection and deprivation is honor. He
has this philosophy about control of mind and body. It's a dogma really. One
that is very enticing for those of us who crave predictability and results.
We've been friends for almost twenty-two years, nearly
two-thirds of my lifetime. Our relationship is complicated to define, but I’d
be remiss if I didn’t admit that I have always carried insatiable infatuation
with him. Maybe it’s not love in
the traditional sense, but in many ways the feelings I have for him are as
intense if not more. Ed can make me feel like I am the most special girl in the
world or most worthless creature to walk the earth. His mind changes on a whim,
me at his mercy as to which way it goes.
I want to be
special. I want Ed to approve.
I know it's not a healthy relationship, but it is vital
nonetheless. Without Ed I cannot imagine how I would've survived the sudden
loss of my father at the obscenely impressionable age of 13, or holding my
first born child lifeless in my arms, or miscarriage, or five years of brutal
emotional and physical violence, estrangement from my family and friends and
divorce. I have no idea how I
would’ve found the determination, energy, or presence of mind to reconcile my
son’s Autism diagnosis.
In those “What the Fuck, Universe?” times I crave an
absolute power over anything that can be manipulated. I try to stop mind from spiraling through the how and why of
such things. The search is
fruitless and exhausting. Besides, Ed taught me that there are variables which
are out of my control and that I can only be responsible for myself and my
actions.
He also taught me that my actions have the power to provide
the control I seek, in a tangible way that makes all that other stuff almost
not matter. Because if I focus
enough on what I can control; eventually nothing else will matter. Time will pass while I am consumed
internally and time heals all wounds, or at the very least numbs the sharpness
of the memory, if not the pain.
Through it all Ed has been consistent if not loyal.
Four years ago today, as I sat in the neurosciences building
of our local hospital shaking and crying and signing stacks of paperwork, Ed
was with me. As I begged the
Resident doctor to just let me go to my car for one last cigarette, Ed reminded
me that I was in control here. I
could leave. I could do what I
wanted.
I went to the car and had that cigarette. As I paced the garage on that freezing
winters’ day, outwardly assessing my options, Ed and I had a terrible
fight. I believed that I needed to
stay but Ed told me that if I did I would lose control and there was no shame
worse that losing control. I remember
screaming at him through tears, “I am scared and I am sick. God dammit, Ed, I
just need to stay for a few days.
I need to get better because I have a child. He is everything to me.”
And in an instant, in that parking garage, Ed abandoned me
and I was alone.
I smoked another cigarette and returned to the staging area.
I was devastated that Ed left me, after getting me into this mess. I have never felt so alone. I hated Ed
that day and for many days after.
I signed the papers, defeated, and followed the nurse through a maze of elevators and stairs. When I arrived the door buzzed and locked behind me. The staff rifled through my bags, took the drawstring from my pants and my cell phone, gave me some grippy socks and offered me dinner. I didn't want dinner. I wanted to call Ed and tell him I'd made a horrible mistake, that he was right, and beg him to come rescue me from that place. I didn't perhaps out of fear, or spite.
I hid away in the bed that first night frightened to step
outside of my room. I woke up with
my roommate standing over me, staring, in the middle of the night until at last
the nurse came and put her back to bed.
I couldn’t go back to sleep and I couldn’t leave the room either. The
whole common area was filled with the kind of kids (all grown up) that would've
kicked my ass in high school.
There were board games, and IV's, and group, and nutrition
counseling.
At some point I requested the Chaplain, a middle-aged
unassuming woman. I told her I
didn't believe in her god but I wanted to talk to her anyway. She didn't care whether I believed in
her god. She listened. I told her about the loves and losses
of my life. How the one thing I craved was control and achieving perfection and
that Ed and I had fought.
At some point in this conversation I became very angry with
Ed, for abandoning me when I needed him the most. I broke and I confided in
this stranger what she, and seemingly everyone else but me, knew. I told her
that I was anorexic. That I had
starved my body and soul by taking up with an Eating Disorder (my cherished Ed)
for some 18 years on and off in feeble attempts to numb the pain of loss and
disappointment. She told me Ed
wasn't a good friend, but I knew that.
She told me I was going to die if I didn't get control. “Control, I scoffed. That's what this
is all about! Don't you see that?”
Everything shattered the moment I realized that she was
right. I imagine this is what it
feels like to be in a cult and then leave. To have your whole belief system challenged and obliterated
and to know that you were wrong for so very long.
I was disoriented.
I felt horrified with myself. Somewhere along the way, probably very
early on, the control I perceived I had was not my own. It was Ed's. My liberation was through oppression. Ed had lied to
me.
For days after I was vacant.
I spent five days in a locked psychiatric ward. Every bite of food I took was
chronicled. I could not use the
bathroom or shower alone. I was
weighed backwards. The number I
craved so badly I could only imagine growing bigger and bigger and out of my
control.
I was not special. I was just another girl who’d been played
by Ed.
Here I am, four years after rock bottom. I wish I could tell
you that I never talk to Ed anymore.
You'd think, after nearly losing my life and my family (more than once),
I'd find it in me to tell him to Fuck Off. I would be lying if I told you he was gone. He will never be gone.
For the most part I’ve kept him quiet. Gaining an obscene amount of weight
helped. He was so disgusted with
my sloth that he took leave for a while.
There are times when I see what so called recovery has done to my body
and hate those people who told me this was the right thing, the only thing, to
do.
He’s there, alright, telling me how special I can be if I
just gave it the old college try.
Tsk-tsking at what a shame it is that I’m not everything I could be.
It doesn’t take much for me to let Ed back into my life again. I promise my infatuation with him is as
real as ever. When heartbreak and
misfortune begin to pile up, there is comfort in making the numbers on the
scale fall. There is pride in
reaching the point where your stomach gives up and no longer asks for
nourishment.
I can't party with Ed like I used to, it's hard on an aging
body.
Besides, I’ve seen the light. I know that Ed’s philosophy is wrong. I know that worth is tied to so much more than beauty. I know he is disgusted by the curves and rolls I now carry, all of them scars of my attempts at recovery.
Besides, I’ve seen the light. I know that Ed’s philosophy is wrong. I know that worth is tied to so much more than beauty. I know he is disgusted by the curves and rolls I now carry, all of them scars of my attempts at recovery.
His disdain for my weakness and my failed perfection
continues to grow.
I have no doubt, that given the chance, he will kill me some
day.
Thirty pounds ago I flirted with Ed. I was overweight and unhappy with
myself. He promised me I’d get
here, and reminded me that here was only the beginning. He delivered. On days that I eat more than a protein bar my body promptly
rejects sustenance. Its’ a little
quality check Ed puts in place to help me stay on track. I like the accountability. I see
glimpses of the beautiful girl I was.
I know I am nowhere near my goal.
Ed reminds me of that constantly.
I want to tell him I can take it from here. I can do it without him. I have a nutritionist and a therapist. I want to tell him I can’t let this
happen again, that I can’t die – I have a child, but there are moments that I
believe that pleasing him is worth the risk.
After all, I just want to be special and I’m almost there.
Friday, February 22, 2013
How you can help #TeamIssy
A while back I posted a link to my friend Kelli's blog about the situation with her autistic daughter, Issy, and her aggressive behaviors.
Since then they've received thousands in donations that have made it possible for Issy to stay in the residential program for another 23 days!!!
But there's still more you can do to help support Kelli and Issy:
Follow them on twitter at TeamIssy
Like their Facebook page at TeamIssy
But right now we're trying to get The Ellen Show to take notice.
Please consider clicking here to go to Ellen's nomination page and nominating Kelli to be on the show.
When you go to the page I've linked above, put your info on the form and talk about Kelli and Issy in the message.
You can say something like: I would like to nominate Kelli Stapleton and her family. This is a really great family who has tried to do everything for their daughter. Issy has autism and is trapped by her aggression. Her mother has had several serious injuries from Issy. Currently Issy has a brief stay in a treatment center but insurance and the department of health is denying to pay for full treatment. If you could just bring attention to this problem I know it would help Issy and many other good families falling through the cracks in the system. They are 'Team Issy' on Facebook or @teamissy on twitter.
For a picture, use the one at the top of this page.
Thank you!!!
Tuesday, February 19, 2013
I... am not smart
It's raining today. Raining pretty hard, actually. This morning I was at work, waiting for my client, who was late. She owns an art studio for kids, it's really cool, actually. Anyway, she was late, and I decided to dash out to grab some coffee while I waited; the coffee place is right across the street from her studio.
As I was headed out the door, I saw her pulling up, so I went into "hurry up" mode. I ran across the street, got my coffee, and then went back to cross the street again. But there were cars coming from both directions and I was impatient to get back. I stood there for about half a minute, yelling at cars inside my head, and getting totally soaked and annoyed.
It wasn't until I opened up her studio door and went inside that I realized why I had gotten so wet while waiting for cars to pass: I was holding my soaking wet umbrella under my arm.
But at least I remembered my coffee. And, in the end, that's what's important.
As I was headed out the door, I saw her pulling up, so I went into "hurry up" mode. I ran across the street, got my coffee, and then went back to cross the street again. But there were cars coming from both directions and I was impatient to get back. I stood there for about half a minute, yelling at cars inside my head, and getting totally soaked and annoyed.
It wasn't until I opened up her studio door and went inside that I realized why I had gotten so wet while waiting for cars to pass: I was holding my soaking wet umbrella under my arm.
But at least I remembered my coffee. And, in the end, that's what's important.
Sunday, February 17, 2013
Minecraft playdates
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| This is the cake I made him for Child 2's birthday last year. I swear I had blogged about it but I can't find it now. |
Child 2 is a Minecraft fan. This weekend he asked me if he could move from playing on the iPod to playing on a server on the Xbox. I'm a little nervous about that, because he's only 7, and online gaming can be pretty brutal. He's very likely to have somebody tell him his mother sucks cocks or something, and really, he's just too young to be hearing about what his mother does in the privacy of her own bedroom. The cock sucking discussion can wait until he's at least in high school, don't you think?
But then I remembered that I have lots of online friends whose kids play Minecraft, and I bet some of them play on the Xbox, too. Hey, if I know their mothers, I'm sure their kids are cool. And knowing the kind of moms that I meet online, there's no way in hell any of them would let their kids tell another player that their mom sucks cock. I know I sure wouldn't!
So, I went onto Facebook and posted a message that we were looking for friends, and I immediately heard from a few with their gamertags. Friend requests were exchanged and new worlds were created! Soon they were blowing up zombies and finding diamonds and pumpkins in no time. He was THRILLED.
Sunday, however, was the funniest day. He had made a friend of creeperboi whose mother, Jennifer, is a Facebook friend. Jennifer has the setup with a microphone, so on our end of the TV we could hear them talking, but they couldn't hear us because we have a different setup. Jennifer and I were chatting on Facebook while the kids played and we worked out this system where creeperboi would say something, Child 2 would respond, I would type his response into my FB chat window and Jennifer would relay the message.
Things got confusing, though, and both kids would forget about the nuances of our fancy communication system. They were both constantly talking, but only we could hear them, and I kept having to remind Child 2 that creeperboi couldn't actually hear him. He kept yelling things at the TV, to no avail. And I think creeperboi forgot, too, and started talking into Jennifer's iPad, thinking he could speak directly to Child 2 that way. And Child 2 kept dictating things to me: "Tell creeperboi's mom to tell creeperboi that I was underground near the lava but I didn't find the diamond. Sad face." (He actually said "sad face" to indicate that I should make a frowny guy). I would also relay messages like "tell creeperboi we have his bread!!" and "I have to go pee now." That last one did not happen inside the game.
The part I found the most funny, though, was that I could also hear everything that was going on in Jennifer's house. Her 4 other kids, playing their own games and music.... asking what was for dinner.... I would type something into the FB chat and then I could hear her laugh on my TV.... it was really funny. The whole thing was like this great big playdate, only in 2 different time zones.
It was awesome. The kids had a blast and Jennifer and I laughed our asses off. We'll definitely be doing it again!
Saturday, February 16, 2013
Thursday, February 14, 2013
Are you new to autism? I was once where you are
Does it seem like I know what I'm talking about here? Do I seem confident in my knowledge of autism? I've got this great big blog, with lots of stuff that I've written, and I probably seem like I know what I'm doing (more or less), but that hasn't always been the case, you know.
I was looking through my old emails tonight, I don't even remember why now, I've been at this for about an hour, and I found this message that I posted to our local parenting mailing list; it's dated 3/12/2004:
I just wanted to tell you that you're not alone. If you're reading this and you know somebody who might benefit from those words, please pass it on.
I was looking through my old emails tonight, I don't even remember why now, I've been at this for about an hour, and I found this message that I posted to our local parenting mailing list; it's dated 3/12/2004:
We've just returned from the Developmental Pediatrician who has recommended Early Intervention for my 25 month old son. She was hesitant to give him a diagnosis, and when I asked, she said she would call it "Global Developmental Delay." Basically, he's about 10 months behind in all areas, some more, some less, but specifically he has a marked speech delay; at 25 months he has yet to say any words clearly. I say "clearly" because it's possible that he says lots of words, but we just don't understand them. He babbles constantly, understands everything we say to him; can follow directions (when he wants to!), and communicates his needs quite well nonverbally. He's been late in all of the major milestones so far, (crawling, pulling up, walking, etc.) but he's gotten to all of them eventually. I don't know what to think about an Early Intervention program. How necessary is it? My husband and I are very concerned with "labeling" him with a diagnosis that he'll have to wear for the rest of his life. But should those concerns be outweighed by the possible benefits from putting in him a program? What I want more than anything is to connect with other parents who have been where we are now and can tell us what choices they made and why, and what the results were. JillI wanted to post this message for any parent who is new to the autism world. You may be feeling overwhelmed or scared or having a whole range of emotions you don't know what to do with, and I just wanted to tell you that I have been there. I know exactly how you're feeling. I was once in the exact same position you were, but I didn't have the great big internet to turn to.
I just wanted to tell you that you're not alone. If you're reading this and you know somebody who might benefit from those words, please pass it on.
Wednesday, February 13, 2013
Who doesn't love a good shameless brag?
This was drawn all in purple because we have no yellow dry erase markers that Child 1 finds acceptable and purple is the only color we have that isn't actually a color of one of the lines.
and for comparison purposes
I am not an autism expert...
.... I am a Child 1 expert.
I am well versed in my child's strengths, weaknesses and quirks. I can tell you exactly how his autism manifests and at what age he started to show signs. I can speak with 100% certainty about his Early Intervention, the ABA program we had at home for 3 years and how his experience has been with public education so far. I can tell you what has worked, what has not worked and what I would do again. I can make recommendations about things I think might help you, and I can help you find the information they need to get appropriate interventions. I will quote to you from our IEP if I think it might be useful information, and I will help you find phone numbers for district staff if you need it.
None of this make me an "expert" in autism, though. Like I said, all this does it make me an expert in my own child and my own experiences, and I am certainly not unique in this. Life is a learning process, as we grow and change our feelings and opinions will change, as well. None of us are mind readers (as far as I know), none of us are superheroes, and none of us are perfect. However, in my opinion, we all have something we bring to the table of life, and all of our voices are important, regardless of who we are and how we have lived.
I consulted with Flannery who blogs at The Connor Chronicles and who is autistic, herself, and she had this to say:
I am well versed in my child's strengths, weaknesses and quirks. I can tell you exactly how his autism manifests and at what age he started to show signs. I can speak with 100% certainty about his Early Intervention, the ABA program we had at home for 3 years and how his experience has been with public education so far. I can tell you what has worked, what has not worked and what I would do again. I can make recommendations about things I think might help you, and I can help you find the information they need to get appropriate interventions. I will quote to you from our IEP if I think it might be useful information, and I will help you find phone numbers for district staff if you need it.
None of this make me an "expert" in autism, though. Like I said, all this does it make me an expert in my own child and my own experiences, and I am certainly not unique in this. Life is a learning process, as we grow and change our feelings and opinions will change, as well. None of us are mind readers (as far as I know), none of us are superheroes, and none of us are perfect. However, in my opinion, we all have something we bring to the table of life, and all of our voices are important, regardless of who we are and how we have lived.
I consulted with Flannery who blogs at The Connor Chronicles and who is autistic, herself, and she had this to say:
Our unique circumstances and experiences are valid and valuable to advocacy. While we can't speak to someone else's experience, we should each have a place at the table and an opportunity for our voices to be heard. While no one person or group is an "autism expert", together our collective knowledge can be used to help everyone on the spectrum to be seen as equal.
My point? My point is that I would be hesitant to trust the words of any person or blog or organization or Facebook page who makes a claim to be an expert in anything as they, too, are experts only with themselves. Nobody can speak for somebody else's life, they can only speak for their own.
Tuesday, February 12, 2013
Thinking globally and acting locally for autism acceptance
This is a half repost, half new post. I've previously said things that I'd like to say again, so I'm not going to rewrite it all. You can find the original one here.
When Child 1 was first diagnosed, the pediatrician told us, in a nutshell "he has PDD-NOS. It's on the autism spectrum but it isn't autism." As a result, I spent the next 9 months in a complete state of denial. "He's on the autism spectrum but he doesn't have autism," I told myself. This meant that I didn't need to investigate ABA, or any kind of treatment options that the school district wasn't offering me. At my first IEP meeting, I happily accepted everything. I had no idea what I was doing, and after all, these guys are the experts, right? So, great! This nonverbal 3 year old, who is still in diapers, should attend a special day pre-school for 3 hours a day, and that's all. What the hell did I know? I thought I did good for him.
It was only just after he turned 3, and started scripting, that my denial was shattered. He was obviously autistic, and I needed to get off my ass and figure out a way to help him. So, I hit the "books" (internet), and found him a program. I found myself an advocate and I convinced the district to make it all happen. We started our home program when he was 3 3/4 and there were immediate results. Things got better.
Today he's 11 and he's awesome. Totally verbal, super smart, (almost) always happy, and the sweetest, kindest, gentlest person you could ever meet. Every teacher or tutor I've ever had has told me "I wish all my students were like him." He's a joy to work with and to be around, and I can't take credit for all of that, it's just his nature; it's how he was born.
I know that my experience with autism has been much easier than that of some of my friends' experiences. He has no behavioral issues, he has no meltdowns, at this point he has very few sensory issues; he's actually much easier to parent than his typical brother. I also know that I am lucky that this is my experience. I am very much aware that many, many other parents have not had it this easy, and never for a second do I take this for granted. I consider it, now, my personal responsibility to give back to the autism community as much as I possibly can. So that my experience can help others; so that other parents won't feel so alone.
Here in cyberspace, however, there’s a war going on. It’s about autism parents vs. autistics, and ironically I’ve seen some of the worst, most patronizing behavior coming from my fellow autism parents on behalf of autistic people. I’m not interested in participating in a political war, though; politics frustrate and anger me. I can’t even watch the news without getting pissed and I certainly have no desire to fight a cyber war that has no end in sight. My instincts in all of these cases tell me to find a middle ground, but that’s never going to happen if I’m the only one who thinks that, so in general I try to stay out of it.
But when I see my friends being attacked, I will come to their defense. I am not ashamed to say that I am fiercely loyal, and I will jump into the middle of something that doesn't involve me in order to defend a friend under attack. My tools are sarcasm and brutal honesty, and I'm not afraid to use them. You see, I don't care who you are, how important you see yourself to be, or how many followers you have; if you're acting like a bully, I'm going to tell you you're acting like a bully. Some might say the same about me, and I will accept that if I think it is warranted, because I take responsibility for my actions, at all times. I will apologize if necessary but I will also refuse to apologize, if necessary.
In the "real" world, however, my job is not to “fight,” but to support. This morning I spent an hour on the phone with a parent in our district, helping her to navigate the system and find the best services for her daughter who is autistic. Yesterday I met with another parent and did the same. I have three emails in my personal inbox right now from parents in similar situations. This is how I act on behalf of the autism community: helping parents. Helping them find support, for themselves and for their kids. The online dialogue is too much for me to take on, I'm just one person, and so this is the route I have chosen to try to make the world a better place for my son and for autistic people everywhere: one kid at a time.
I try to do the same on my blog, on Twitter and on Facebook. Here are some things I've written that I am particularly proud of that may be helpful if you are a parent trying to find services for your child:
As always, you can contact me at jillsmo at gmail.com if you have any questions or if there's anything you think I might be able to help you with.
When Child 1 was first diagnosed, the pediatrician told us, in a nutshell "he has PDD-NOS. It's on the autism spectrum but it isn't autism." As a result, I spent the next 9 months in a complete state of denial. "He's on the autism spectrum but he doesn't have autism," I told myself. This meant that I didn't need to investigate ABA, or any kind of treatment options that the school district wasn't offering me. At my first IEP meeting, I happily accepted everything. I had no idea what I was doing, and after all, these guys are the experts, right? So, great! This nonverbal 3 year old, who is still in diapers, should attend a special day pre-school for 3 hours a day, and that's all. What the hell did I know? I thought I did good for him.
It was only just after he turned 3, and started scripting, that my denial was shattered. He was obviously autistic, and I needed to get off my ass and figure out a way to help him. So, I hit the "books" (internet), and found him a program. I found myself an advocate and I convinced the district to make it all happen. We started our home program when he was 3 3/4 and there were immediate results. Things got better.
Today he's 11 and he's awesome. Totally verbal, super smart, (almost) always happy, and the sweetest, kindest, gentlest person you could ever meet. Every teacher or tutor I've ever had has told me "I wish all my students were like him." He's a joy to work with and to be around, and I can't take credit for all of that, it's just his nature; it's how he was born.
I know that my experience with autism has been much easier than that of some of my friends' experiences. He has no behavioral issues, he has no meltdowns, at this point he has very few sensory issues; he's actually much easier to parent than his typical brother. I also know that I am lucky that this is my experience. I am very much aware that many, many other parents have not had it this easy, and never for a second do I take this for granted. I consider it, now, my personal responsibility to give back to the autism community as much as I possibly can. So that my experience can help others; so that other parents won't feel so alone.
Here in cyberspace, however, there’s a war going on. It’s about autism parents vs. autistics, and ironically I’ve seen some of the worst, most patronizing behavior coming from my fellow autism parents on behalf of autistic people. I’m not interested in participating in a political war, though; politics frustrate and anger me. I can’t even watch the news without getting pissed and I certainly have no desire to fight a cyber war that has no end in sight. My instincts in all of these cases tell me to find a middle ground, but that’s never going to happen if I’m the only one who thinks that, so in general I try to stay out of it.
But when I see my friends being attacked, I will come to their defense. I am not ashamed to say that I am fiercely loyal, and I will jump into the middle of something that doesn't involve me in order to defend a friend under attack. My tools are sarcasm and brutal honesty, and I'm not afraid to use them. You see, I don't care who you are, how important you see yourself to be, or how many followers you have; if you're acting like a bully, I'm going to tell you you're acting like a bully. Some might say the same about me, and I will accept that if I think it is warranted, because I take responsibility for my actions, at all times. I will apologize if necessary but I will also refuse to apologize, if necessary.
In the "real" world, however, my job is not to “fight,” but to support. This morning I spent an hour on the phone with a parent in our district, helping her to navigate the system and find the best services for her daughter who is autistic. Yesterday I met with another parent and did the same. I have three emails in my personal inbox right now from parents in similar situations. This is how I act on behalf of the autism community: helping parents. Helping them find support, for themselves and for their kids. The online dialogue is too much for me to take on, I'm just one person, and so this is the route I have chosen to try to make the world a better place for my son and for autistic people everywhere: one kid at a time.
I try to do the same on my blog, on Twitter and on Facebook. Here are some things I've written that I am particularly proud of that may be helpful if you are a parent trying to find services for your child:
- Getting your GenEd teachers ready for your autistic kid
- About Special Education
- "My child needs an IEP."
As always, you can contact me at jillsmo at gmail.com if you have any questions or if there's anything you think I might be able to help you with.
Sunday, February 10, 2013
Autism dreams
I had this dream last night that I was with the boys at what was probably a school (not our school, we weren't familiar with it) and we were all hanging out in the library. Child 1 was lining up books and making a BART track and Child 2 was playing on his iPod.
At some point, I don't know exactly why, I took Child 2's iPod away from him (probably because he was yelling curses at it) and he got mad at me and ran out. On my way out to find him I ran into a group of people who I think was our IEP team. They informed me that we were finally going to have that meeting I've been wanting and let's go into this conference room and close the door.
I objected, because I needed to go find Child 2 and make sure he was okay. He was probably locked up in one of these classrooms crying his eyes out. They let me check a few rooms but the clear message was that I needed to go into the conference room immediately or the meeting would never happen.
I felt panicky, because I didn't know where he was. In my dream mind I thought that it was likely that he had found some kids, had forgotten all about being mad at me and was probably having a great time (this is very likely). But the pressure was on and I was being asked to make a choice: my NT kid's needs vs. my autistic kid's needs.
In the non dream world of course this seems silly; the answer is to say screw the meeting I need to go and find my kid. In the dream world things are never that simple and I don't actually know what I ended up doing. I either made a choice or the dream morphed into something else and suddenly we were at our house but it wasn't our house, it was McDonalds, or something like that. But I woke up pondering what my subconscious was telling me.
Do I feel pressure to make a choice between my kids, because of their different needs? I don't feel internal pressure, but I have to say that there is external pressure towards all autism parents. The choice isn't as specific as one kid over the other, it is between the autism world vs. the non autism world. We're supposed to be looking at the world as if autism is the only thing that exists in it. We're supposed to be activists on behalf of the autism community, and if we're not then we're doing something wrong. This reality, that autism is all encompassing, is certainly true for some people; people who are autistic themselves or who do not have typically developing kids, but in general it is not true for the majority of autism parents. We have other kids, we have other things going on, we can't give up our entire lives to autism acceptance; some of us are just trying to make it from one day to the next, we don't even have any choices at all.
I don't like that pressure, not just because I don't agree with it, but because it is MY choice how I raise my kids and live my life. I object to the idea that somebody who doesn't know me would judge me as lacking simply because I don't toe their particular line. I have my own line, and my responsibility is first and foremost to my family.
I wish I could go back into the dream and tell those people that they can fuck their meeting because I'm going to go find my NT kid. Sure, he doesn't have the same issues and needs as his brother, but he has issues and needs of his own and I will not choose one or the other. I will respect them both for who they are and what they need, for as long as we all live.
At some point, I don't know exactly why, I took Child 2's iPod away from him (probably because he was yelling curses at it) and he got mad at me and ran out. On my way out to find him I ran into a group of people who I think was our IEP team. They informed me that we were finally going to have that meeting I've been wanting and let's go into this conference room and close the door.
I objected, because I needed to go find Child 2 and make sure he was okay. He was probably locked up in one of these classrooms crying his eyes out. They let me check a few rooms but the clear message was that I needed to go into the conference room immediately or the meeting would never happen.
I felt panicky, because I didn't know where he was. In my dream mind I thought that it was likely that he had found some kids, had forgotten all about being mad at me and was probably having a great time (this is very likely). But the pressure was on and I was being asked to make a choice: my NT kid's needs vs. my autistic kid's needs.
In the non dream world of course this seems silly; the answer is to say screw the meeting I need to go and find my kid. In the dream world things are never that simple and I don't actually know what I ended up doing. I either made a choice or the dream morphed into something else and suddenly we were at our house but it wasn't our house, it was McDonalds, or something like that. But I woke up pondering what my subconscious was telling me.
Do I feel pressure to make a choice between my kids, because of their different needs? I don't feel internal pressure, but I have to say that there is external pressure towards all autism parents. The choice isn't as specific as one kid over the other, it is between the autism world vs. the non autism world. We're supposed to be looking at the world as if autism is the only thing that exists in it. We're supposed to be activists on behalf of the autism community, and if we're not then we're doing something wrong. This reality, that autism is all encompassing, is certainly true for some people; people who are autistic themselves or who do not have typically developing kids, but in general it is not true for the majority of autism parents. We have other kids, we have other things going on, we can't give up our entire lives to autism acceptance; some of us are just trying to make it from one day to the next, we don't even have any choices at all.
I don't like that pressure, not just because I don't agree with it, but because it is MY choice how I raise my kids and live my life. I object to the idea that somebody who doesn't know me would judge me as lacking simply because I don't toe their particular line. I have my own line, and my responsibility is first and foremost to my family.
I wish I could go back into the dream and tell those people that they can fuck their meeting because I'm going to go find my NT kid. Sure, he doesn't have the same issues and needs as his brother, but he has issues and needs of his own and I will not choose one or the other. I will respect them both for who they are and what they need, for as long as we all live.
Thursday, February 7, 2013
What is the deal with Brenda and those apples?
Child 2 and I are looking over his homework and he reads out loud the following:
His response? Much like you would expect any precocious 7 year old to say, I think:
"She sold some apples because she had way too many apples, she actually needed to sell more than 350. 753 is a lifetime supply of apples, she really didn't need more than, say, 10, and even that is a lot."
His response? Much like you would expect any precocious 7 year old to say, I think:
"She sold some apples because she had way too many apples, she actually needed to sell more than 350. 753 is a lifetime supply of apples, she really didn't need more than, say, 10, and even that is a lot."
Tuesday, February 5, 2013
Thinking about sheep
I have insomnia, have had it my whole life. As far back as middle school I was taking Benadryl every night, otherwise I would stay up until at least 3:00am, no matter how tired I was.
These days I take melatonin, because most other things will make me too sleepy the next day and if I'm going to be sleepy from drugs I might just as well be sleepy from not sleeping, I suppose. Okay, I'm not entirely sure that logic is sound, but whatever. Sometimes I take xanax. I'm kind of afraid of those prescription sleep things that make you get up and make bacon in your neighbor's house at 4:00am, so I've never tried them. Plus, I can't really take something that will absolutely definitely knock me out because the truth is I'm never really sure if a child is going to come in and need something at any point during the night. Then we might both find ourselves making bacon in the neighbor's house. Child 2 would love that.
Anyway, melatonin loses its effectiveness for me after a long period of taking it, so sometimes, even when I do take it, I still can't sleep. And that's when I lie there, trying to figure out how to occupy my mind so that I will doze off.
Sometimes I try to do math problems in my head, but the sad truth is that I've completely forgotten my multiplication tables so that's just more frustrating than anything else. Or I'll try to count in some strange way, but then I always end up forgetting where I was or what my next number is supposed to be, and that makes me frustrated.
And then, of course, I turn to the old standby: Counting sheep. But I get confused about the mechanics of the sheep counting. Are they supposed to be jumping over a fence? I'm pretty sure they are, but... can sheep even do that? CAN sheep jump over fences? So I get caught up in trying to make my sheep (who have names, and are rude to each other) jump over the fence and I forget all about trying to count them. I imagine their struggle, with their short little legs (I don't even know if they have short little legs, actually) and how their sheep friends would tease them for it.
Okay, so maybe I'm supposed to number them, like cattle or something, and count them that way?
Ultimately, my mind gets tired of these questions; after all, I'm trying to distract myself so that I can stop thinking about the days' events and go to sleep... and so I always... always... end up just... thinking about sheep. Lots of sheep, just standing there. I don't even try to count them. I just think about them.
For some reason that works.
These days I take melatonin, because most other things will make me too sleepy the next day and if I'm going to be sleepy from drugs I might just as well be sleepy from not sleeping, I suppose. Okay, I'm not entirely sure that logic is sound, but whatever. Sometimes I take xanax. I'm kind of afraid of those prescription sleep things that make you get up and make bacon in your neighbor's house at 4:00am, so I've never tried them. Plus, I can't really take something that will absolutely definitely knock me out because the truth is I'm never really sure if a child is going to come in and need something at any point during the night. Then we might both find ourselves making bacon in the neighbor's house. Child 2 would love that.
Anyway, melatonin loses its effectiveness for me after a long period of taking it, so sometimes, even when I do take it, I still can't sleep. And that's when I lie there, trying to figure out how to occupy my mind so that I will doze off.
Sometimes I try to do math problems in my head, but the sad truth is that I've completely forgotten my multiplication tables so that's just more frustrating than anything else. Or I'll try to count in some strange way, but then I always end up forgetting where I was or what my next number is supposed to be, and that makes me frustrated.
And then, of course, I turn to the old standby: Counting sheep. But I get confused about the mechanics of the sheep counting. Are they supposed to be jumping over a fence? I'm pretty sure they are, but... can sheep even do that? CAN sheep jump over fences? So I get caught up in trying to make my sheep (who have names, and are rude to each other) jump over the fence and I forget all about trying to count them. I imagine their struggle, with their short little legs (I don't even know if they have short little legs, actually) and how their sheep friends would tease them for it.
Okay, so maybe I'm supposed to number them, like cattle or something, and count them that way?
For some reason that works.
Dancing on the edge: One mother's autism reality
This post I'm linking to below was written by my friend Kelli. I would like to help her spread the word. Please read her post and share as far and as wide as possible.
Dancing on the edge
Dancing on the edge
Sunday, February 3, 2013
Stupid toe
My toe hurts. I must have kicked a chair or something, I don't actually remember, that kind of things happens to me all the time. I kick chairs. Chairs anger me. No, not really, I'm just klutzy and don't pay attention to, um, most things, so I end up kicking a lot of chairs and couches and desk legs. Well I guess I pissed off the wrong chair because my toe has been really hurting the last week or so. I can move it around okay, but it hurts when I walk on it (so don't walk on it, dummy).
Then earlier I was in the shower and I happen to look down at my feet and they look like this:
Is that toe supposed to be that far over to the left like that? I mean, I'm no doctor, but I'm fairly certain they're all supposed to line up with relative symmetry. At least that's what they're doing on the other foot.
I'm not going to a doctor or anything, fuck it, it's just a toe. But it makes me cranky. So I had hubs tape it to its neighbors. Out of pure spite. Just to piss it off. Now it looks like this:
Now we're both cranky.
Stupid toe.
Then earlier I was in the shower and I happen to look down at my feet and they look like this:
Is that toe supposed to be that far over to the left like that? I mean, I'm no doctor, but I'm fairly certain they're all supposed to line up with relative symmetry. At least that's what they're doing on the other foot.
I'm not going to a doctor or anything, fuck it, it's just a toe. But it makes me cranky. So I had hubs tape it to its neighbors. Out of pure spite. Just to piss it off. Now it looks like this:
Now we're both cranky.
Stupid toe.
Friday, February 1, 2013
"Are you okay?"
Child 1 is sad today. He doesn't want to go to school. He's getting over being sick, but still not feeling his best, and his coping skills aren't strong.
It's "Crazy Hair Day" at school; the whole school has weird hair or a weird hat on. The rest of the school is having fun but to him it just means that something different is happening. The day has been designated "not the same as usual," and he doesn't like it when things aren't the same as usual. That, plus his body not feeling 100%, has combined to create a lot of sadness inside of him. When he's upset, he doesn't get angry or act out, he shuts down and he cries.
And that's when my compulsion comes out, my need to make that sadness go away, and I ask "are you okay?" Constantly. It's an incredibly stupid question, because... clearly he is not okay. But my overwhelming need for him to be okay manifests itself in the form of this question that I ask him, repeatedly.
It's a terrible question to ask, not only because the answer is glaringly obvious, but because I'm sure he feels pressure to actually be okay when he's not. This is not my intention when I ask, I certainly don't mean to make him actually feel worse, but I just can't help myself. "Are you okay?" "Are you good?" SHUT UP, Jill!
I struck a deal with him, because I can't keep him home today (ironically, or not, I have an IEP meeting) and talked to his teacher: At any point during the day if he needs to, he will ask to be sent to the office where he will be allowed to skip whatever is going on and draw. He agreed to this deal, he likes to go to the office and draw. I watched them both walk off to the classroom and I said "Okay, bye. Are you okay?" His teacher turned to look at me with this incredulous face. Of course he's not okay. Can't you see that? He's crying and acting as if he's being lead to his death. What a dumb thing to ask. What's wrong with you?
But I can't help myself, I obviously need to work on this. Not only do I need to work on my compulsive need to ask the question, I also need to realize that not everything in his life is going to be okay all the time, and I'm not always going to have any say in the matter. I won't be able to make deals for him, I'm not going to be "in control." Life is hard and at some point I need to let go, hoping that I've instilled him with enough good skills to be able to take care of himself. I think this is the greatest lesson of parenting, finding that balance between this innate need to protect and knowing that you won't always be able to.
It's funny, because he constantly and repeatedly asks me questions, and oftentimes I answer him with "why are you asking me a question when you already know the answer?" I need to start asking myself that, too.
It's "Crazy Hair Day" at school; the whole school has weird hair or a weird hat on. The rest of the school is having fun but to him it just means that something different is happening. The day has been designated "not the same as usual," and he doesn't like it when things aren't the same as usual. That, plus his body not feeling 100%, has combined to create a lot of sadness inside of him. When he's upset, he doesn't get angry or act out, he shuts down and he cries.
And that's when my compulsion comes out, my need to make that sadness go away, and I ask "are you okay?" Constantly. It's an incredibly stupid question, because... clearly he is not okay. But my overwhelming need for him to be okay manifests itself in the form of this question that I ask him, repeatedly.
It's a terrible question to ask, not only because the answer is glaringly obvious, but because I'm sure he feels pressure to actually be okay when he's not. This is not my intention when I ask, I certainly don't mean to make him actually feel worse, but I just can't help myself. "Are you okay?" "Are you good?" SHUT UP, Jill!
I struck a deal with him, because I can't keep him home today (ironically, or not, I have an IEP meeting) and talked to his teacher: At any point during the day if he needs to, he will ask to be sent to the office where he will be allowed to skip whatever is going on and draw. He agreed to this deal, he likes to go to the office and draw. I watched them both walk off to the classroom and I said "Okay, bye. Are you okay?" His teacher turned to look at me with this incredulous face. Of course he's not okay. Can't you see that? He's crying and acting as if he's being lead to his death. What a dumb thing to ask. What's wrong with you?
But I can't help myself, I obviously need to work on this. Not only do I need to work on my compulsive need to ask the question, I also need to realize that not everything in his life is going to be okay all the time, and I'm not always going to have any say in the matter. I won't be able to make deals for him, I'm not going to be "in control." Life is hard and at some point I need to let go, hoping that I've instilled him with enough good skills to be able to take care of himself. I think this is the greatest lesson of parenting, finding that balance between this innate need to protect and knowing that you won't always be able to.
It's funny, because he constantly and repeatedly asks me questions, and oftentimes I answer him with "why are you asking me a question when you already know the answer?" I need to start asking myself that, too.
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