The D Word

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There is something I've been fighting against since K was a toddler. It's the idea that because she is a girl, her reactions to things, her behaviors, are rooted more in the dramatic arts than in any disability. Many times I have been told that K is just "being dramatic", or that girls are just overly emotional. While none of that explained why my kid didn't speak in anything even resembling a sentence until she was four, or why she didn't play with toys, or couldn't pedal a bike, it was always used to explain meltdowns, and outbursts, bolting, and social issues. 

Usually I hear these types of comments from "laypeople", if you will. Those untrained in autism or special education. Those who want to blame my parenting, or who think K would be fine if, you know, she was their kid (yes, this has been said.) Then there are just the "funny" passing comments people make. Comments they find funny, but which make me cringe. Or maybe they think calling my child dramatic takes away some of the sting they assume I feel because my child is autistic. 

Drama can be changed. Cured. Calling K dramatic makes it seem like her challenges can be easily abated. Except, you know, it's not drama. 

Usually I just allow these comments to roll off my back. I can't spend my life trying to convince people that K deals with some very real issues. I'm can't spend all my free time attempting to disprove "Rainman" or explaining the meaning of the word spectrum. 

But last week, the D word came from someone I wouldn't expect to say it. Someone who is supposed to be helping K. Who, previously, was very concerned about my daughter. Last week, after a meltdown, this person rolled her eyes, saying "Oh, the drama!"

My stomach dropped. This is someone we have hired to get down to the nitty-gritty. To really figure out K's needs going forward. I had a lot of faith in her at first, but after that comment? I feel like we are wasting our money. Like there's no way K is going to continue to get the help she needs if the person charged with getting her that help thinks an anxiety-fueled meltdown=drama.

I loathe the D word. I hate how it's tossed around when you have a girl on the spectrum, as if everything can be explained away because, hormones. Because that's just how girls act. No one has ever used it with B. The process of getting him diagnosed was much easier, even. People expect boys to be autistic...but girls? Well, for a lot of them, the D word comes before any real diagnosis, or any real support. 

Maybe it was an off-the-cuff remark meant to break the tension. Maybe I'm overthinking it, as I'm wont to do. But, if we keep perpetuating the idea that girls are just dramatic, and all of their struggles can be explained away by that (or other things, such as shyness), they will remain underdiagnosed, and lacking the support and services they need. 

At this point, I can only hope for the best, and that this person remains dedicated to helping our daughter with her (well-documented) struggles. Maybe it doesn't seem like a big deal, but when you are a parent of a child who faces many real challenges, having anyone not take it seriously, that stings. 

Too Bad, So Sad?

Fair doesn't mean everyone gets the same thing, it means everyone gets what they need.
(photo credit) 

Another Disney post made it's way around social media yesterday. I read it, but didn't pass it around, myself. I figured I'd beaten that horse to death, and I don't seek to be purposely annoying. People know my stance, and since all my (one-way) communications with Disney fell on deaf ears (hey, I'm not a super blogger that's going to tow the Disney line just because), I basically let it go...for now.

So, yeah, dead horse, except...something I read made me really angry. A comment made by another parent, who basically said if your kid can't access Disney like everyone else, then they just shouldn't go. I'm paraphrasing, here. There were really long comments, listing all the reasons why kids like mine shouldn't be allowed(?) to ever go to Disney, and that, sure, they'd miss out on certain experiences in life, but people with neurological or medical issues don't deserve special accommodations, so they just shouldn't go. It's just not fair to everyone else. Oh, and we are being irresponsible parents taking them, knowing it will be hard.

Now, I'm no shrinking violet, and in non-shrinking-violet form I responded. I wasn't especially nice in my comments back, for which I did feel a tad bit guilty, but I suppose when you know you're fighting a losing battle (kindness and compassion just can't be taught), you don't feel the need to play as nice as you would otherwise. I will admit I took the comments personally. Maybe they weren't meant to be taken as harshly as I read them, but the message was the same, whatever the tone.

I am sure a lot of people feel the same way as this commenter. That because my kids face certain challenges when visiting someplace like Disney, going there should be off the table for our family. Never mind that my kids, especially B, want to go, and ask to go, they just have to miss out because they aren't typical.

People being OK with any form of discrimination is bad. Teaching kids that everyone needs to receive the same exact thing, or life isn't fair, also bad. Sometimes there are individuals who need more help than others. Is it their lot to just hide away at home? Miss out on life? Live on the fringes of society, because they don't deserve to be accommodated?

This type of thinking goes against everything we say we want, when we talk about inclusion. It's separating people. Saying there are those who don't deserve happiness alongside their typical peers, because they access things differently. It's taking a group of people and seeing them as less. As not worthy. Only everything I'm trying to fight.

My kids work hard to fit into the world around them. Especially K. I mean, that girl works her tail off just to make it through the day, and I don't think it's wrong to expect others to work just a fraction of the amount to accommodate her, at times. I don't think I should feel guilty about wanting those accommodations. I don't think expecting human beings to show a little compassion for others is beyond reason.

So, to those who say I should just keep my kids home (unless I want to give this blog an over 18 rating, I can't say how I really feel), just know, we refuse to hide. I refuse to limit my children's lives. I refuse to give in to those who are mean-spirited, and who were actually born without an empathy gene.

All of this goes far beyond Disney, and it doesn't just have to do with autism. Every person on this earth deserves to be treated with respect, and dignity. Telling them to just stay home, well you might as well tell them to just not exist. None of us should stand for that.

A Cure

It's been rolling around in my brain lately...the idea of "curing" autism. Obviously, the events of the past week have brought it to the surface. Sometimes it can look like cure vs. no cure, but I don't see it that way. I see it more as, why do we want a cure? How do we go about finding a cure? What message do we want to send to society when looking for a cure?

To be completely honest, there are parts of my children I love that I know are due to them being autistic. Parts I would never, ever want to strip away. K's intense love for animals. B's literal mind. I mean, the conversations I have with my just-turned-7 year old are something I would never want to lose. K leaning into me, head buried in my hair because it feels good to her, is not something I want to go away.

There is, of course, the anxiety. The times it is difficult to communicate. The reactions of others to my children's behaviors. Those things? Yes, I wish I could wave a magic wand and make them non-issues. B's Epilepsy, his GI issues, though maybe not directly related, are things I wish I could cure. But I don't have a desire for them to be typical.  I'd be losing something very precious to me if did...my children as they are now. At their core. Their personalities, shaped by a different neurology, sure, but not one that's inherently bad.

What's bad is how autistic individual are treated. How they can be looked upon as unintelligent creatures, because they can't sit still for a test, or sit quietly when instructed. How we look at scores on evaluation after evaluation, and think that's the sum of our kids. Their worth, measured out in IQ points, or academic success, or social progress. And we can say that isn't how we measure their worth, but when we wish to cure everything, what we are saying is they would be worth more if they were like everyone else.

I think autism can be much more than just a different way of thinking. I respect individuals who choose a neurodiverse label for themselves (as I will embrace how my children choose to see autism in their lives), but I won't make a generalization that places all brands of autism in the same box. That's not my place.

However, I want us to be careful when we talk about wanting a cure, and understand what that really means. It means the child you have now disappearing. Maybe just a little, but maybe a lot. Maybe you are OK with that, and that's your choice, but it's not mine. Not anymore, anyway.

So, I don't think the discussion, this argument, is cure vs. no cure. I think it's about deciding how we see our kids, what we are willing to lose, and how we are willing to portray our children to uncover said cure. It's a complicated issue, in my mind. Not cut and dry. Not one that merits saying, just give me a magic pill, because it's all or nothing.

I want my children to be happy. Free of physical pain. Fulfilled in their lives, whatever that means to them, not me. I don't want them paraded out as burdens to our family, or mistakes within the gene pool.

I always want the focus to be on the positives. How I've become a better person because of my kids. How I want to mitigate the anxiety and medical issues, not because I want different children, but because everyone deserves to live a happy, comfortable life. A life where they are respected and cared for, and not seen as the scourge of the earth. Does that sound harsh? Maybe. Is it what a lot of people believe about autism because of the message certain organizations send? Yes. If you don't think that's true, you are fooling yourself. One only needs to read the comment section of any given article in the mainstream media to know it is true.

I suppose I do want a cure, in a way, but a different one than a lot of folks. It's a complicated issue, my friends, and one that deserves a lot of thought. I just ask myself, how do I want my children to view themselves? That's the light that leads my way.

My Child is a Victim of Your Fear-Mongering

Yesterday I read a few blog posts that featured kids talking about what being autistic means to them. They were positive in their descriptions, and readers ate it up. I wanted so badly to participate, but I didn't. Not because K is unable to do an interview, but because I knew it wouldn't garner the same results. 

I knew K would probably describe autism as a bad thing. 

I didn't want to write about it, but an email from a friend made me realize that it was something I had to share. Something a lot of us are dealing with, due to forces beyond our control. Because we can't be with our children every second, protecting them. I've talked a lot about how viewing autism in such a negative way can affect those living with the disorder, but what better way to really show you than to relate it to my own child. 

Since K was 3 (maybe before), she has had some incredibly negative experiences. She was treated poorly by those she (should have) trusted most. People who didn't try to understand and accept her, but instead punished and ignored her. Being aware that you are different can be a curse when those differences are pointed out as your greatest weaknesses. When every therapy you attend is meant to change the person you are, because the person you are is broken. You can only do so much as a parent. The truth is, when a child is attacked from all sides, when she doesn't feel comfortable anywhere, those experiences set in deeper than anything you say as a mom. 

And that kills me.

I have seen firsthand what happens when autism is viewed as something that must be eliminated at all costs. When a child is viewed as a drain on resources. As a difficult kid, who needs to learn how to be like everyone else. Who is told what to say and how to act, because what comes naturally just isn't right. I've tried to put myself in K's shoes, and it's so, so hard. I can't imagine what it must be like to constantly pretend to be a certain way in order to gain approval. In order to be rewarded. In order to stay safe. 

I am out there screaming from the rooftops that the way we view autism needs to change, because I see how the way we view autism now hurts my kid. So, no, I am not naive to believe things could be different. I am not living in some magical world where autism is wonderful, and my child is adored for her differences. I am living in a world where my child has been beaten down because she is unable to pass, and I am scared where this path will lead as she gets older. 

I don't want K to hate herself. I don't want her thinking that being autistic means she's a bad kid, or someone unworthy of love, acceptance, or happiness. My child understands there are those who don't like her because of how she behaves, how she thinks, or the way her body can betray her. Sure, we have moved mountains to change her environment. I've changed my own opinions about autism when I saw what was happening to my kid. When I stepped back and stopped focusing on me, and started focusing on K.

But, a lot of damage was already done. It will take time for that to heal. I will work tirelessly to make sure she finds a way to be self-confident. That she knows she is the wonderful, beautiful, smart, worthy-of-all-good-things in life, person I see. And that she knows being autistic isn't something to hate, or something to be hated for. 

So there will be no cute or profound interview here. Not yet. But, I'm working on it. I just wanted you to know that people are affected by the messages of fear tossed out to illicit donations and pity. By those only seeking a cure for this epidemic called autism. By the way society treats autistic individuals, because some need to spread intense negativity at every turn. 

I know because my almost 10 year old has suffered for it. And it needs to stop. Now. 

So, About Epilepsy Awareness Month...

Cure for Epilepsy? Yes, please! 

November is Epilepsy Awareness month. As you know, we were thrust into this club over the summer. Without warning. With no history of seizures. No illness, no trigger, nothing. Although I am well aware that a lot of kids on the spectrum experience seizures, it was something I never thought we'd face. My kids are older, healthy, and I was under the assumption something like Epilepsy would reveal itself earlier in life.

Well, 5 Grand Mal seizures over the course of 3 weeks changed all that. One hospitalization, and one prescription for Depakote later, November suddenly means something different. Sure, I've known people whose children have seizures, but without first hand experience, I didn't get it. How scary it is to watch your child seize. To watch them take four.long.hours to get back to "normal" (Ben does not have a short recovery time, and seeing your child lose the physical ability to speak, while looking at you with sheer terror in his eyes, it's not something I'd wish on anyone.) Seeing your child change after seizure #1, his behavior, just something about him, it's devastating.

B is still B, but he's a little different now. Epilepsy brought with it severe hyperactivity (I describe Ben as my little pinball.) It brought with it bouts of him looking really sick and really pale, for no apparent reason (this started after the seizures, and we have no idea what's causing it, yet.) It brought with it sleepless nights (for me), and took from B things which he loves (gymnastics, swimming without a bubble, using the playground equipment at school.) It's led me to scary Google searches, and worrying what this will mean for B down the road, if he isn't one of the lucky people who "outgrows" it.

Epilepsy brought with it doctors who are so used to seizures, they fail to understand parents like me are not. Who hand you a prescription for medication that could pretty much kill your child's organs, and think you shouldn't be concerned, ask any questions, or request further testing.

Epilepsy brought with it no explanation to why this was happening to my boy. Doctors can't even guess. No one knows what causes it, unless there is a specific genetic condition found. My child's brain went haywire, and no one can tell me why. What it means. What to expect. Nothing.

The truth is, all I knew about Epilepsy came from TV, or maybe from a friend here or there. People flailing around like a fish out of water (not at all how an actual seizure looks.) An infant getting a high fever, and having a seizure. A child staring off into space, or someone finding seizure activity during a sleep study. If anything, I thought those were the type of seizures we'd experience (not that those aren't scary or serious, too.) They just seem more common, especially with kids on the spectrum. I was in no way prepared for the kind of seizures B experienced, and didn't even recognize what it was the first time. I had no idea how scary it would be to receive an Epilepsy diagnosis. Everything that could come along with it. That sometimes even unexplained death occurs.

Death. 

I've been through a lot with autism, but I have to admit Epilepsy scares me much more. I don't care if my kids live with me forever, I just want them to live. I want them to be healthy. Something potentially taking that away...I can't explain how it makes me feel. I really can't. It's what keeps me up at night.

So, while I think it's time to move on from autism awareness (I have very different thoughts about each condition), I think it's time for people to actually become aware of Epilepsy. I know I had no idea what it really was, or what to do if I ever saw someone having a seizure (if I even recognized what it was), before B was diagnosed. I even had someone refer to B's seizures as "fits", so clearly educating the public as to what Epilepsy is, and what is isn't (he's not crazy!), is important.

For more information on Epilepsy (because you should 100% educate yourselves), check out these websites:

Epilepsy.Com

Epilepsy Foundation

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