Fooling Myself

I'm tired. Like, really, really tired. There have been days lately I could barely get out of bed. I started seeing a therapist. Have tried a few different meds (all of which my body seems to reject in a not-so-graceful fashion). I'm trying my best to be a good mom. Not a good anything else, just a good mom, because that's really all I can do right now.

Things have been rough lately. I haven't blogged in a while because I wasn't sure how much I wanted to share. K isn't doing well. We are having issues with B and school. Or just school, I should say, as B is his usual, wonderful self. We are waiting on the edge of our seats to see if K got into a program for next year that kinda-sorta gives us hope. But, they have one whole space available, and more than one kid vying for said space. I'm not an optimist by nature, but without this program, I don't know what we will do. I really don't.

I'm also dealing with my own health issues. Health issues that will hopefully find a name when I meet with my doctor tomorrow. Health issues that have left me wondering how I am going to make it through the next hour, let alone the next 50 years.

And....

For the past year I've been trying to convince myself that autism wasn't a bad thing. I really tried to jump on that train, thinking I was only helping my children. Helping the world accept them. Helping them love themselves for the awesome humans they are, regardless of how they struggle. Regardless of how withdrawn K becomes. Or how depressed. Or how self-loathing. Turning a blind eye to how hard things really are, even when she tells me. Speaks those words! Mommy, everything is HARD. I told myself I was doing the right thing, because if I admitted how hard autism is, or how it affects my child, I would somehow be justifying murder. That I would somehow look sympathetic to the parents who choose to kill their children. That I had to act as though autism wasn't the big bad, because otherwise people would see my child as the big bad.

And maybe autism isn't the big bad in B's life. He just isn't affected the same way. He has his issues, but he's happy. My job is making sure no one screws him up along the way. But K? I feel like I'm losing her all the time lately, and it's scary and sad and leaves me feeling very lost and very alone.

People can hate me for not saying autism is a gift bestowed upon my kids. They can hate me for coming out and saying how hard life is lately. People can judge my parenting and say it's all my fault. I don't care anymore. I really don't.

I always said I would let my children lead me on this journey, and that what autism meant to them would be what matters, not anything I believe or want to believe. Autism is not something that is a positive force in K's life right now, and the absolute awesomeness that is B is just something a lot of people don't embrace. I just want happy kids. That's all. Hell, I just want to be happy myself.

Life is complicated. Autism is complicated. I can't pretend to be OK with it all anymore. Not with how life is going right now.

I'm sorry if I've let anyone down. This is just our reality.

Now it's back to fighting for my kids.

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. 

We Don't Need to Live the Same Life to Feel Connected

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I think I've always been incredibly honest on my blog, about our life with autism. I don't have children who are considered "severe". If you met K and B, you might not see them as having any issues right off the bat. They don't flap. They have language (Ben has too much language...ha.) They don't toe walk, or look "stereotypically" autistic.

You'd probably notice B, first. Mostly because he rarely makes eye contact, and goes on and on and on and...well, you get it. He doesn't want to have back and forth conversations, but would prefer if you just listened to him talk about his interests all day. He can't be still. He is more stimmy than K, but it can just look like he moves a lot. People don't realize stimming doesn't begin and end with flapping. I even know some profoundly autistic individuals who don't flap.

It might take a bit for you to really notice that anything is going on with K. She's very quiet, and doesn't say much. She has very restricted interests, but won't go on and on like her brother. She speaks when she has something to say, and is plenty verbal, but isn't going to have a random conversation with you. Her speech can slow down significantly the more she talks, and it is something that frustrates her a lot. Sometimes she'll be excited, and share something with you, but she's definitely not the same as your typical 9 1/2 year old girl.

K is also my jumper. When she's excited, or anxious, she jumps. She's been known to make fists, over and over, for no particular reason. Sometimes she rubs her stomach, up and down, as a way to calm herself. Again, nothing you would point at and immediately say, AUTISM, unless you spent more time with her, and saw all the pieces come together.

K is also the child who "spaces out", more. Who sometimes doesn't seem quite with it. It can look like she's just not paying attention, daydreaming, or being rude. It's not any of those things. It's just her brand of autism.

When it comes to play, K is my stereotypical autistic kid. She just doesn't do it. Never has. It used to bother me, but it doesn't anymore. If lining up all her stuffed animals makes her happy, so be it. If having collections of toys, instead of actually playing with them, floats her boat, great! She'll be 10 in a few months, and has recently become interested in My Little Pony. I'll get her a few, and be happy she's not into typical "tween" things, because My Little Pony is much better than Justin Beiber (or insert any awful boy band/tween show/fad, here.) Although, since Netflix has a plethora of said tween shows, you are likely to hear K script a line here and there, or notice an attitude eerily similar to one of the characters. You'd probably just think she was being a typical girl her age, but she's isn't.

For the most part, my kids aren't scripters, though. K used to be, but not so much now. Sure, B will make me play out an episode of Spongebob with him, or ask me "What time is it" from Bubble Guppies 100 times a day, but I don't see that as scripting. They have language, they use it, and sometimes kids just like to repeat their favorite shows. Heck, I know typical adults who do that!

B is less stereotypical when it comes to play. He loves to play. He was coming up with really involved play scenarios at 2. Of course, you can only play what he comes up with, and don't even bother trying to insert your own ideas. During his neuropsych testing, he actually put his hands up and told the tester to not come play with him, because she would just mess things up. He has an amazing imagination, and sometimes what he wants to do isn't on par with what his peers want to do. He prefers older kids, because of this. It's cool having a kid who actually plays, though. I'll take it! 

Both kids are easily frustrated. Both have meltdowns that can look alot like they are just bratty, spoiled, kids. Those who are only familiar with the severe forms of autism, wouldn't guess there was something deeper going on. Over the years I've learned to not let looks and comments get to me. Doesn't mean it's not still hard dragging a screaming kid out of Target, but I won't be the mother yelling at people because they give us looks. People like that aren't worth my time.

They both have sensory issues, although B is much more severe. He has a lot of tactile issues, and still has trouble being independent with things like tooth brushing and toileting, because of these issues. Do not dare put something sticky on his hands, because he will take you out trying to get to a sink. We went through a period of handwashing that left his hands bloody and dry, but thankfully that has eased up a bit. I used to be the only parent at preschool pick up not handed an art project, because B refused to even touch a paintbrush, lest a dot of paint get on him, and don't even get started on glue.

K almost "under feels" things, so clothing and stickiness, or how tight/loose something is, doesn't affect her like it does B. She is more a seeker in that way, where she could roll around in sand for hours, or cover herself with shaving cream and feel great. She cannot stand crowds or loud noise, though, and will let everyone around her know when things aren't OK! She has more anxiety than B, and is less able to wait, too. It's a mixed bag.

Sometimes it's hard having kids who aren't the stereotypes people look for (although, I think Ben screams Aspergers pretty loudly these days.) Sometimes I feel like I don't belong in the "club", or others don't think I belong. Sometimes I can't relate to the struggles other parents have, as I'm sure they can't always relate to mine. I'll admit when I don't understand, though. I don't try to make it seem like I get all aspects of autism. I don't.

You won't find me exaggerating how affected my kids are, just so I can relate. I mention this because there are people who take great liberties with what autism looks like in their families. Probably because if they told the truth, they'd lose their main audience. I know people like this. It bothers me a lot, but I am not the autism police. I'm not here to rat people out, or question intentions. I just wanted to be clear that I am not one of them. What you see is what you get.

Why did I write this blog? Because I want you, my reader(s) to really understand our life on the spectrum. I want you to know that I get if there are times you shake your fist at me, and say I just don't get it. I am sure sometimes I don't. There are things I am an expert in, but I wouldn't call myself an expert in autism. Just our particular brand(s).

But, I am here to listen. I'm here to laugh and cry and celebrate and curse the gods with you. I might not live your life, but I can be be the shoulder you need when things aren't going so well. We're all humans, we all have compassion. At least we all should.

I recently updated my about page, and added my email address. I loathe the (somewhat) anonymous nature of this blog, and I miss the days when people emailed me, and connected on a more personal level. Especially in this day and age, when not having someone to listen can kick off a trip to a really dark place.

We might come from very different worlds, but it doesn't mean we can't be each other's rocks. That really is what community, or "a village" should be about. I don't blog for followers or popularity (good thing, eh!), I blog to make connections. I want to start doing that more. It's what I miss about my old style of "wide-open" blogging, the most.

There Are Always Two Sides

When you read a person's blog, their tweets, their Facebook page, the important thing to remember is you are only getting one side of the story. No matter what you read, no matter the stories you are told, there is always another side you don't know about. Always.

A few years back, when I started blogging more about autism than my trips to Target, we were in a dark time. K's aggression was at it's height. I won't go into details about things that happened, but at one point I thought K and I were going to have to move out. It was time when we made appointments with every doctor and therapist we could. When we had IEP meetings every month. When I felt so defeated, I wondered how I'd make it through the day.

And I wrote about it on my blog. I went into far too many details, not thinking twice about my daughter's privacy, or how the world was going to view here through reading my blog. Of course, I had people emailing me their sympathies. I had people tweeting me, and supporting me on FB. No one ever asked what the other side was. Why K was having such behaviors. What we were going to figure it out, or, yes, what part my husband and I played in the situation. People didn't think about K. I didn't think about K. I thought about myself, and how hard my life was, and that was all I wrote about. Looking back, I see what a huge part I played in making those days so dark. How horribly I handled things. How I ran us all ragged with those doctors and therapist appointments. How I was basically telling my child through my actions how bad she was, and how she was ruining all our lives.

At the time, I didn't see it that way. If someone had asked for the other side of the story, or tried to make me think differently, I probably would have cut them out of my life. I said how much I hated autism. How it was a parasite that was keeping K from being who she was truly meant to be. I did everything in my power to fix her. We spent every spare dollar we had trying to remove autism, and that's no exaggeration. We couldn't afford much else, especially since a lot of things at the time weren't covered by insurance. I barely saw my husband because I was gone 4-5 nights a week with K. My marriage suffered. My son was dragged along to appointment after appointment. It consumed my life...trying to break K free from the big A.

During those years, admittedly, it was all about me. How I felt. What I was doing. How hard life was for me. I was living in a world of self-pity. I was a martyr for the cause.

It's difficult, reflecting back on those years. I spent so much time trying to change my child, I never stopped to wonder if she really needed to be changed. I didn't stop to see how hard life was for her. I didn't take two seconds to see how the decisions I made were affecting my child. What wasn't working. What was best for her, even if it didn't align with the gold standard of autism treatments. I take a lot of responsibility for those years, now. Most of the responsibility. I probably deserve it all.

I'm ashamed at how long it took me to just leave my child alone, and be who she is. She doesn't have to be typical to be a enjoyed. She hasn't been taken hostage by autism. I've learned to listen to her, spoken word and not. I used to blame our old speech therapist for dropping K as a client bc of her behavior issues, but the thing is, K was telling us all that it just wasn't working anymore. I was too stubborn to listen. Behavior is communication. Always. I just never listened. I knew best. I was the mom.

K still has her days. The difference is, I just let her be. Forcing anything always makes things more difficult, and autism isn't something to be conquered. It's just how her brain is wired. We tend to personify it, making it something it isn't, and that's what gets us in trouble. Autism is a word we use to describe a certain type of neurology, but it's not alive. It's not doing anything to anyone. It's not evil. It's not some separate entity we can kill off, no matter what some people believe.

Here's the thing, we all have our own opinions about autism, and that's fine, but only if our kids are safe. The second we start doing things to our children that are potentially harmful, burning ourselves out to fix them, making them feel like they are less, then it's not fine. Our children, no matter how severe, are people. Human beings, with thoughts and feelings and emotions. They have a side of the story, too, and it isn't just about us as parents. We have to be honest about our kids, our shortcomings, and what is really beneficial.

I never thought I'd be on this side. I never thought I'd step away from hating autism. I rallied against it for so long, and I did cut people out of my life who I thought were judging my parenting. I was angry, and lost, and depressed...and I made myself that way. And it was never my child's fault. We choose how  we live, and we can't live in such a negative space forever. If we do, then things like last week happen, and they just can't.

I also want you to be aware of how those not in the autism community view us. I was reading a People article today about the incident last week, and I was sickened by some of the comments. How, after reading this mother's blog, some believed she should be freed. That it was completely understandable, trying to kill your child in that situation. That one side they read, her words, made them think she hadn't even committed a crime. Her life had been so hard, all because of her autistic daughter. No mention of what that child went through. It's easy to say these things when we don't see both parties equally, as human beings. When one is seen as damaged, and less.. Because that is how these people see Issy. As less. As having done something to make her mother attempt murder. It's all her fault.

And I say again, there are two sides of every story.

TWO.

When the outside world (and even those inside) think a mother shouldn't be punished for trying to kill her child, because autism is so awful, and her life was so hard, then we have failed as a community. We need to stop fighting one another, and work together to keep every child safe. They should be our #1 priority. I hope we can all agree on that. You can continue to hate autism, and send that message to the world, but just realize how that message shapes the opinions of others. Stop and decide what message you really want to send, and how much our children are worth.

My Truth

I've been working really hard lately to focus on the silver linings. Always looking ahead. Letting go of grudges.

But, sometimes, it's hard.

Here on the blog (well, blogs, since this isn't my first rodeo. See thee "about" page), I've always been really open with our lives. I've always been honest that I have two, "high-functioning" kids, and honest about how that means nothing in the midst of a rage-fueled meltdown, the lack of friends, or the myriad of other things that come along with autism.

But, our autism, heck, the two different "autisms" we deal with in this house, are just that. Our "autisms". I don't know what profoundly affected folk go through. I don't know what it's like to see autism as only a gift. I've made that clear many, many times. I speak for us, hope some people get something from my writing, but know we all walk different paths.

I also try really hared to remember other people have their own stories. Everything is relative. What's awesome or horrible to you, could be the total opposite to someone else.

But, sometimes, I feel bitter. Probably a bit jealous. I read blogs/status updates/Twitter feeds where someones worst day would be a welcome change here. I think to myself, if that is the hardest thing this person/family goes through, they should consider themselves lucky.

The thing is, I don't know the inner workings of people's lives. A lot of the time, what is shared is only part of the picture. Some people don't want to reveal the really bad days, because that might make people uncomfortable, or they deem it too private. On the flip side, there are those who don't want to share the really good days, because that might make them look like they don't belong in the "club".

Some people just want to appeal to the masses, so they mold their stories so that as many people as possible can relate. When it comes down to it, how often do we meet the person on the other side of the computer in real life? We are in complete control of how people view us, and our children, when they log on. Some might manipulate what they write to draw you in, because page likes, or followers, are the end game.

For me, well, I want to be me so much, I've gotten into heaps of trouble staying true to myself, and our story (remember that "about" page?).

So here I am...a middle-class, stay-at-home mom. We aren't rich, we aren't poor, but we are lucky to have the means (most of the time) to fight for our kids. We live in a big house, bought before any diagnosis, and before most of our disposable income went towards all things "autism". Our house is large, yet in dire need of updating, new carpets, and a good power wash. All our belongings are still a mish-mash of what my husband and I brought to our relationship, which sometimes makes me feel less like adult, and more like I'm living in a dorm. My marriage isn't perfect, I can't cook to save my life, and I am proud the one day of the week my house is actually clean. Sometimes I yell at my kids, and sometimes I can be a crappy friend/wife/insert anything else here. I'm a nervous nellie, and loathe confrontation to a fault.

But, I love my family, would do anything you ask of me, and try really hard to be worthy of the oxygen I breathe.

I am constantly pursuing happiness, and trying desperately to shed my "Yankee" negativity (a term from my college days). In my younger years, I went through some hard times, homelessness, helplessness, and the fear of that happening again drives me now. I'm probably not exactly like you, and might be the polar opposite of you, but I appreciate everyone in my life, real, and virtual. Those relationships get me through.

I guess I just wanted, no needed, you to know that I'm just a regular person, trying to connect through my little blog. I'm not trying to make money, write a book, or get free swag. My goal has always been just sharing our lives, our journey, hoping that even just one person feels better knowing someone out there "gets it". I've always wanted connect with my readers on a more personal level (which, yes, has become more difficult this past year, with all the school-blog issues, but let's me honest, most of you probably know who I am). Because of this, I've made great in-real-life friends. Heck, I've made great cyber friends! (READ THIS. That awesome gymnastics Dora...found for me by someone I know only online, and shipped across the country for me. See...that's what I'm talking about). 

So, thanks for reading. It means more to me than you'll ever know.

(P.S. Let me know if I can ever find you a cool gymnastics Dora, too)