Don't Die. Or, It's Time to Take Care of Ourselves.

After the whole, I think I'm dying, incident, it really hit home how important it is that I, you know, make doctors appointments for myself, and get my stress level under control. First stop was the GI doctor. I mostly made the appointment because, since I don't chew my food like an adult, I swallowed a piece of crusty bread that basically cut it's way down my esophagus, into my stomach. After a week of pain, I decided that I should consult with an actual physician, since images of said crusty bread turning into a giant, festering, wound, danced in my head.

Turns out, I wasn't so far off.

After speaking to the doctor, she recommended I get an endoscopy. I have a history of reflux, and other fabulous stomach issues, especially since having kid #2. I'm not a fan of anything medical, especially when I have to be sedated/put under, but I put on my big girl panties and kept the appointment. I am OK with making appointments, it's the keeping them part at which I do not excel.

So, long story short (sidebar: waking up during an endoscopy is horrible and painful and next time I will make sure they know to drug me up good), it was discovered that I have "multiple stomach ulcers".

I guess all those jokes I made last year, about our fight with the school slowly killing me, were not all wrong. That and other things have left me with, I believe, 3 beautiful ulcers. Three. Not one. Not two.

Three. 

I was instructed to basically never take ibuprofen again, and up my Prilosec to twice a day. I actually didn't remember about the Prilosec until yesterday, because they give you this information while you are still mostly drugged up, not thinking it important to maybe send you home with any written instructions.

I have a follow up with GI, but not until the end of February. It was an appointment I made before the endoscopy, but I am sure if they want me in sooner, they will let me know. There's really not much to be done for ulcers, besides avoiding certain meds, and probably easing up on the Franks Red Hot. I just have to take my Prilosec and hope things heal.

Of course, now I am basically afraid of all food. Every since the bread incident, I've had pain every time I eat (and sometimes when I'm not eating), and now that I know there is actually something wrong, well, all food seems like the enemy. I am guessing maybe the bread attack angered the ulcers, as I never had pain before that, or else it's all just a big coincidence. Who knows. The whole situation just stinks, basically.

Oh, did I mention that on the way to my endoscopy, probably two whole minutes (or less) from the hospital, we were rear-ended? Yep. As though my nerves weren't already shot, some college kid decided braking wasn't a mandatory thing, and slammed into us as we were stopped so the person in front of us could turn. SO, the same bumper we just had replaced last August because of a similar accident, now has to be fixed again.

Anyhow, moral of the story? Take care of yourself. Making sure you are healthy needs to be a priority. I'm not telling you to take a vacation, or go get a pedicure, because, I get it, there's not always time (or money) for those types of luxuries. I'm telling you make sure you are around for your kids for as long as possible. That's what's important.

So, join me on the year of actually going to the doctor. Don't let your one stomach ulcer become three.

The Middle

I don't believe vaccines cause autism, but I also don't consider autism a gift. I fall somewhere in the middle. A place where killing your autistic child is always, without excuse, WRONG, and a place where trying to force all parents to believe that autism is just a difference in neurology is also wrong. I sit in this middle chunk of belief, where hate doesn't exist, because these are our kids, and it just can't, but where the struggles are real. For both parent and child (I know, I know, parents don't matter, except they do.)

Sometimes I find myself skating the thin line between two extremes. Mostly because I have friends on both sides. People I love and admire, even if we don't always agree. Sometimes when I speak up about my own beliefs, I end up feeling guilty, because I truly never want to offend anyone. I hate thinking people are angry with me, to a fault.

However, because I try to avoid taking a side on some things, or immediately try to soothe someone I offend, I lose my own voice in the process. I've realized that as much as I try to appease those around me, this action isn't always reciprocal. If someone doesn't care about losing me as a friend, why should I bend over backwards keeping them happy? Because, honestly, when you're the only one trying to keep the peace, well, jokes on you, right?

Of course, there are things from which I don't back down, even now. Murder. Restraints/Seclusion. Abusive therapies. I just need to learn how not to back down on everything I believe. If I lose friends, I lose friends, but hopefully I'll gain respect, too. And confidence in myself.

You're Missing Out...

When you have a child with autism, there is a part of you that is always waiting for the other shoe to drop. For years I sent K off to school, waiting for that phone call home. A note in her folder. An inevitable meltdown. I lived holding my breath, not able to relax because I was constantly bracing myself for the next "bad" thing. Autism hung over my head like a dark cloud, waiting to ruin...everything. 

I used to live like this. I do not anymore. 

This weekend I read two things that hit me right in the gut. One was a dad saying he could never enjoy the good days with his child, because there would inevitably be bad days right around the corner. Another was a mother saying that autism was her whole life, and not a minute went by where she wasn't completely consumed by it. 

Both made me sad. Made me cringe. Made me realize how hard it is to get away from that type of thinking. I feel lucky I found a way out, although my way out was not one I wish for other people. K was mistreated by people we trusted, and because of this mistreatment I couldn't help but change not only how I viewed my child, but autism as a whole. I hope others can find a way out before their children suffer, which is why I write what I do. I have to. 

I can't say, though, that I never enjoyed the good days. I think I jumped for joy on those days, relishing every second. I did always end a good day wondering when that other shoe would drop. What price we would pay the universe for the one day I didn't feel like we were circling the drain. But, holding onto those good times is what helped me survive. Allowed me to get up every morning. Kept me fighting for my child. You must always, always, hold onto those days. Live in them. Be in the moment. They can be our greatest anchor when times get tough. 

These days, we have more good times than bad. Mostly because of how I changed the way I look at K, the way I treat her, the way I view her life. It's amazing how changing yourself can affect your child. How when you accept them, really accept them, and stop viewing autism as the big bad, everything gets so much easier. Sure, your kid is still autistic, and there are still days that are so, so difficult (I am not denying that), but when you let go of trying to "fix" your kid, or of your own resentment, well, I can't explain the weight lifted from your shoulders. 

My life used to revolve around K's diagnosis. It really was at the forefront of my mind every second of every day. Our weeks were filled with therapy after therapy, trying to get K as close to normal as possible. That's the goal, normalcy. Or so we're told. I really can't think of any other neurological disorder where you are told you need to force your kid out of it. Where the only goal is for them to pass as typical, and if you don't somehow reach that goal, all is lost. Where it's OK to abuse your child with chemicals and pills. Where it's OK to restrain kids, and toss them into isolation rooms. Where making sure autistic people know something is terribly wrong with them, and that nothing they say, think, or do is right, is just part of "therapy". 

It seems unique to autism, just the pervasive hatred of the disorder itself. Hatred that spills over onto the kids (and adults), because how could it not? Hatred that allows murderers to be sympathized with, and people to be harmed, physically and emotionally. 

Before I took a good, hard look at what I was doing to my child, sure, my life was autism, and K suffered for it. I didn't listen to her as I dragged her literally kicking and screaming to speech. To social group after social group. When our home ABA person would come, and she'd barricade herself in her room. I thought her behavior meant I wasn't trying hard enough, when in reality her behavior meant I was trying too hard. I had a kid who just needed to be, to exist solely as she was, without being forced to be someone else. I missed getting to know my daughter during those years, because I was hell bent on fixing her. It's my biggest regret. 

So now, my life doesn't revolve around autism. My life revolves around my kids. I am no longer burdened with trying to fix them, because they don't need to be fixed. I don't worry about their differences. I don't sit online all day trying to find the latest and greatest therapy. Our afternoons are spent at home, spending time together, not in waiting rooms. I enjoy them for who they are, and give them space when they need it. I maneuver our lives so that they are comfortable, and I don't wish for any magic pill or treatment to cure them of themselves. I am sad I ever did. 

I no longer look at a good day as just the lead in to something bad. I just try not to put my children in situations that I know are hard for them. It's a process, learning the ins and outs of your child, their needs, but it's worth it. I no longer hold my breath, waiting for the next meltdown, because I try my hardest to make sure my kids don't feel the need to react that way. No, I am not perfect, like, at all, but our days are more peaceful because I've finally learned how to parent an autistic child. I have made mistakes along the way, I'm only human, but I have come a long way. 

When you look at autism as the devil, as something that has stolen your child, you are missing out on that child. On everything they do have to offer. The love they have to give. Life might not be what you imagined, but it still needs to be enjoyed. There are definitely things I wish I could cure for my kids: GI issues, Epilepsy, but I don't need to cure them from their unique neurology. I need to step back and let them be themselves, and make sure they know they are everything that is right in my life, not what is wrong. 

It Takes a Village, but Actually...

Yesterday was a rough morning for K. I don't know why, exactly. Tiredness, 9yo girl hormones, something else? Maybe all three? She just started out a little off when I woke her up for dance. I gave her the option of staying home, but she wanted to go. Part of me wanted to talk her into staying home, especially because dance is an hour away, but I left the decision to her. I figured she'd have some iPad time on the way there, and maybe things would turn around.

They didn't.

K went into her class, but didn't participate. I figured that was OK. She was sitting, fiddling with her bracelet, and I thought maybe she was working through something. I hoped she'd start feeling better, and it would be business as usual.

But then she started crying, so I decided it was time for a break. We found a quiet corner, and she burst out in tears. Seeing her like this breaks my heart. Especially because I have no clue how to help her, or even why she is sad. K goes through this a lot, and when she gets this upset she starts pulling to the surface every negative feeling she has.

I stood there hugging her, trying to hold back my own tears. I told her we could just go home, but, again, she wanted to stay. Maybe I should have made the decision to leave, but she's going to be 10 in a few months, and I really want her to feel that she has some control over her own life.

We stayed in our quiet corner for a few minutes, and K went back to class. Things were a little better, and she started to participate a bit, but I could tell she was still struggling.

So was I.

I sat in the small stairwell facing the studio, watching my girl, feeling so alone. All the other parents were talking with one another. Laughing. Socializing. Their children were fine. They weren't sitting on pins and needles, hoping to see just one smile from their kid.

I sat there wondering if I made the right decision, letting K go back class. I sat there wondering what was really going on, and how I could help. I sat there wondering why my child has to deal with such anxiety she can't allow herself to have fun. Because that's what fuels days like this...constant, debilitating, anxiety.

I sat on the stairs, resisting the urge to cry, while life went on around me. I was at a dance class for autistic children, yet I felt no different from when K had tried typical dance classes. Like there was no one else there who understood. No one I could talk to. No other parents holding their breath. It was just a given their kids would have fun, be happy, be OK.

One thing that got me through was watching another little girl try to get K to participate time and again. She would take K's hand, or go over and talk to K while trying to pull her gently towards the group. The good thing about a class for autistic children is that there is no judgement on the part of the kids. No one was looking at K like there was something wrong with her. It was really hard to hold back tears, watching another student try so hard to include my child.

My daughter does have a village. It's a village of her peers. Children like her who don't judge, and who truly want her around. For that, I am grateful. So very grateful.

But as much as we talk about parents needing support, can we truly say that village exists? We are adults, and it's no one's responsibility to come take our hand. We all have our own little group of friends, but do we ever consider those on the outside? Those who could use some extra support? Or are we incapable of reaching out? Really forming the support system every blog, status update, and tweet, tells us is essential?

Could we take a lesson from those children who see someone having a rough time, and instinctively reach out? I think we all know the answer to that question.

The thing is, sitting on some stairs alone isn't going to send me down the rabbit hole. But, I am sure there are parents who are thisclose to the edge, and who is there to help them?

A village isn't really a village if it acts more like a clique. If we truly want to help parents in crisis, we have to be aware when someone is struggling right beside us. When K was struggling yesterday, someone saw that, and surrounded her with love. Didn't give up. Just kept taking her hand. And you know what? She made K smile. She made her feel just a little bit better, which to me is nothing short of a miracle.

It's always a gift when our children show us the way.

I'm not writing this because I am angry at the other parents from dance. That's not my point at all. Sitting there alone was hard, but for me it's not a big deal. I also know I've probably missed opportunities to be there for others. I am writing this because it brought to the surface the fact that we as a community always talk about reaching out when we see someone in pain, but how often does it really happen?

One day there might be a parent sitting on those stairs, so close to that rabbit hole, who really needs support. Who needs an invitation for a night out. Who needs someone to just sit and listen. The question is, are you ready to offer that support, even to someone you don't know? When you talk about a village, are your words empty? Meant just for those you already call friends?

Thankfully, K's class ended on a high note when she received a light up wand to take home (sometimes it's the little things), and seeing my child happy was all it took to make me feel better. I learned a lot, though, watching the interaction between my daughter and her classmate. I realized I don't want to just talk the talk. That I need to keep my eyes open for those who are struggling, and that words on a page are just words until you put them into action.

Light up wands make everything better. 

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.