The D Word

credit

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

Danny Did

Talk About It

When Does "Awareness" Stop Being Enough?

Autism is a complicated disability. Even within the same functioning labels, there are great variations. There is a rift within the community because many people feel their autism, or their child's autism, is THE autism. Anyone not affected by their specific brand isn't really autistic, and doesn't really get the challenges that come with the diagnosis. The real diagnosis, that they possess. 

This is how it feels to me, anyway. There might be talk about how functioning labels are inaccurate, or how "if you've met one person with autism, you've met one person with autism", but the truth is there are those who hold tight to those labels. Who believe the variations in the disorder are because most individuals diagnosed aren't really autistic. Not like their kid. The struggles other families face can't compare to their struggles. If there was an award for most affected by autism, they would win.

We can say we wish the divide within the community would close, but until there is acceptance that all individuals, and all families affected by autism are, well, affected by autism, things will never change.

We say we want autism awareness, but at what point do we move on from that? 

We say we want acceptance from society, but how can that be achieved when those within the community can't even accept that what autism looks like in their child doesn't have to be what it looks like in someone else? 

We say we want services and support, but only rally behind whichever services and support we feel benefit our own kids.

Insurance reform is great, unless you choose Floortime for your child. Or any therapy beyond ABA. 

Reaching out to the newly diagnosed is great, unless your kid is turning 18 with no place to live, and no educational or vocational support. 

Walking around a track for autism awareness is wonderful, until you realize all the money you've raised isn't really helping your family. Or any family. Not those on the ground who need real, tangible help. Not if you don't care about a cure, and just want to make sure your kid is alright after you're gone. 

Slapping a magnet on your car is all well and good, until you spend your life savings on fighting a school district over your child's education, because all the awareness in the world doesn't help people understand what your kid really needs to succeed.

And all the awareness in the world doesn't prevent our kids from being thrown in seclusion rooms, or restrained, or treated like 2nd (3rd? 4th?) class citizens in the classroom.

When do we stop kidding ourselves and realize the kind of awareness some people/organizations spread is based on fear, putting autistic individuals in jeopardy? The message society gets is that these kids, these adults, are burdens no one can bear. Broken human beings who must be cured, or eliminated from the gene pool. Who don't deserve a full, happy life. Not when their sole purpose on this earth is to destroy families, and hemorrhage money. 

When we will wake-up and realize we can't have it both ways? We are living in a fairy tale if we believe using this type of language doesn't negatively affect our kids. 

There cannot be peace where there is fear.

There cannot be love where there is hate.

There cannot be acceptance when all people want is a cure.

We have failed our kids when awareness becomes enough. 

When one type of therapy becomes enough. 

When one view of autism becomes enough. 

When we silence those who live with the disability, and listen only to parents, or researchers, or teachers, because we don't believe, really believe, those affected have anything to say. 

When we write off people based on test scores. Verbal ability. Physical appearance. 

At the end of the day there are those who think only they know autism, and only their message needs to be shared. Only their therapy needs to be covered by insurance. Only their desire for a cure needs to be talked about in mainstream media, or their view of what awareness is needs to be funded. When autism is the Big Bad, the worse we make it sound, the better. 

Except when you don't see it that way. But then, who is there to support that view? 

I sound like a broken record, but I cannot say this enough. We need to be honest, really, truly honest with ourselves about what we are putting out there. What we are telling the world. What our message means for our children now, and as they get older. 

We also need to decide if the good any one organization does outweighs the bad. We have to ask ourselves, are we driven by our comfort zone, or the changes we want to see moving forward, even if things get sticky?

It's for everyone one of us to decide, individually. I think sometimes we just get stuck in what we know, and fail to look beyond that.

Do you have to agree with me? No. Do I hope all of you take a few minutes to think about what you believe, who you support, and why? Yes. Just like anything else in life, I want everyone to think independently, and decide their truth. Not based on popular opinion. Not based on any one blog. Just based on what feels right in their heart. 

I know taking time out to really think about what I believe has brought about serious change. It's never easy, but always worth it. 

Just like our kids.

The Hamburger

Last night I decided to take the kids out to dinner. The husband was out rock climbing with a friend, and I just didn't feel like cooking (do I ever?) Restaurants are not easy for K. She loves going out to eat, but waiting for food, or the differences in how dishes are prepared place to place, can make things tough. She usually ends up sprawled out on one side of the booth, or under the table. But, she likes going, so we go. B likes going because he doesn't think my grilled cheese sandwiches (wheat bread) are anywhere near as good as one from a restaurant (white bread and loads of butter.) Getting him to not swing from the chandeliers (haha, like we go to restaurants with chandeliers), is difficult, but did I mention how much I really hate to cook?

I let the kids choose the restaurant, picked the closest location, and off we went. After a mini-meltdown because someone forgot his toy in the car (thank goodness I got a front row parking space), we were seated, and everyone was happy (and, yes, we bring iPads out with us, because I am unapologetic in my love for them.)

While waiting for our food to come out, (K expects it as soon as she places her order, because why wouldn't the waitress have a magic machine that delivers it immediately?) I asked Katie how her field trip was that day. Her school had actually gone out to lunch (yes, two restaurant meals in one day. The horror.), and I wanted to hear how it went. She told me she ordered pasta with butter (as usual), her friend M ordered Mac n Cheese (I am not sure why I think that needs capitalization), and the other student with them ordered a "sandwich", which was gross (in her opinion.)

And then I heard about the egregious injustice carried out...no dessert. Not even the ice cream promised when you order a kid's meal. I explained to K that I'm sure they didn't allow dessert because not everyone ordered a kid's meal (some kids actually eat real food), and it wouldn't be fair if some got ice cream, and others did not. I'm sure you know how well that explanation went over.

What happened next, though, made me laugh. A lot.

As K got more and more worked up over being denied dessert, our food came. She promptly took her burger, and did this:

A burger ALWAYS needs a smiley face made from ketchup. Even if you're upset.
(Also, this is K's version of "photo-bombing".)

I had to laugh. My child, while telling me about the dessert debacle in a voice all the restaurant could hear, was at the same time drawing a smiley face on her food. Usually when I laugh at anything, K gets angry, but when I started to laugh yesterday? She started to laugh, too. She broke out of her frustration, and was able to calm down. The fact that she attempted to "photo-bomb" the picture proves that full-on meltdown mode had been averted.

*Wipes brow*

This is what I love. Even when she was quickly cycling up to a place from which there was potentially no return, she had to keep her routines. She had to draw that smiley face, because that's what you do when you have a hamburger. It doesn't matter if dessert-gate is making your world fall apart, the burger gets a smile. Period. Her need to do that broke the tension. It made me laugh, which (thankfully) made her laugh. Dinner continued, the kids got their ice cream (miracle of miracles), and no one was worse for the wear.

Now, I could view our trip as a really tough night out. I could focus on the fact that K spent most of dinner upset over what happened at lunch, and sprawled out on the booth, thisclose to a meltdown (or that B almost brought down the TV situated directly above his head.) Or I can consider last night a win, brought on by a hamburger with a smile.

I choose the latter.

(P.S. Even if smiley-faced-hamburger didn't happen, I would still consider last night a win because I got to spend time with my two favorite people, and nobody died (for reals). Meltdowns happen. Tough times happen. But I choose to focus on the good, because that's what I call living.)

Happiness Lives Here

I'm going to preface this by saying I am not looking for a debate. If Autism Speaks is your favorite charity, this probably isn't the blog post for you. If you have an open mind, welcome. Any comments attacking me or my readers will be removed. My blog, my rules :) 

I've written and deleted this post a few times since yesterday. There are so many thoughts swimming around in my head, and I've yet to find a cohesive way to write them all down. I am sure this post will showcase that, but I had to write it anyway.

I guess I'll just being with this:

I used to support Autism Speaks. When K was first diagnosed, I thought jumping on the Autism Speaks train was the next logical step. They were it when it came to autism. Or so I thought. There was a time I hated autism. Wished for a cure. Why? Because that's what I thought you were supposed to do. A truly happy life was out of reach, as long as autism was hanging around. It needed to be defeated, my daughter freed of its grasp. There was no other option.

If you've been reading my blog(s) for the past few years, you know firsthand the turnaround I've done when it comes to how I view autism. It's been a 180, for sure. Gradual at first, then quicker these past few months. I've probably left some heads spinning, as I've tried to find my footing while trying to "keep the peace" with those I've considered dear friends for years. Parents who now walk a very different path, but whose friendships I'd never want to lose. Life doesn't have to revolve around autism. Our relationships don't have to be defined by it. We are actual people, not just mothers. I know I will inevitably lose friends along the way, but I also know I've made a choice that's right for my family.

By now you've probably seen the op-ed piece written by one of the founders of Autism Speaks, Suzanne Wright (you can find it here.) I read it Monday night, after seeing a link on Twitter. I read it before any of yesterday's blogs posts, so my opinion isn't based on what someone else wrote. It's based on what I thought while laying in bed, hearing no one's voice but my own. I was so angry, and needed to vent, so I posted this on my personal Facebook page:

Of course, I know what happens when you post anything even slightly controversial on Facebook, but I did it anyway. Sometimes I get so caught up in not wanting to upset people, I keep my opinions to myself. That wasn't an option Monday night. I woke up Tuesday morning to find a plethora of blog posts about the piece. People who had been avid supporters of Autism Speaks were even coming out against them. It seemed to be the straw that broke the camel's back.

It made me happy, not being the only one who was incredibly offended by Suzanne Wright's words. Autism Speaks has had its fair share of fumbles, yet they never seem to care. They've asked what they can do better, yet never change. This was just the icing on the cake.

The piece proved that Autism Speaks doesn't take into account the opinions of those actually living with autism. Or the opinions of parents who are tired of their children being feared, or being used as the worst-case scenario for a pregnant mother. Who don't want to see their children blamed for divorces, or bankruptcies, or miserable lives. It's fear-mongering. Making autism into some Big Bad that rains down misery on the lives of everyone it touches.

*Warning, rant ahead*

Now, maybe you read the article and thought, well, that does describe my life pretty accurately. Maybe you want to tell me to shut up, or that I "just don't get it". Maybe your kids are older, and you hope puberty is hell for me, so I really know how bad it can get (K will be 10 in January, and we've been at this since she was 18 months old, so I'm not exactly "new" here.) Maybe you are where I was just a year or two ago, living in a constant state of sadness, in a life you never imagined, and one you cannot accept. I've been there. But, hey, maybe you just don't believe me. Maybe you know you have it worse, and nothing I write means anything to you, because you've already won this mommy-war (in that case, why do you read my blog?)

If that's how you feel, you are certainly entitled to your opinion, but this is probably where we should part ways. The truth is, there are very few people who truly know me and my family, and there are a lot of things I don't talk about in order to protect the privacy of my children. I know how hard life can be, but it's up to you whether or not you believe me. If you've been a longtime reader, you might remember the days when nothing was sacred, and I wrote about our darkest times (a couple blogs ago.) If you're new, you can only take me at my word. Even most (all) of my friends only know what I want them to know. So, yes, I get it, but I can't force anyone to believe that I do.

Autism is a spectrum. I would never discount the struggles many families face, because we've been through some mighty rough waters, ourselves. But, that's not the point. The point is how I want my kids to be viewed. How I want society to see their worth, and not think their mere existence is a burden no one should shoulder.

*End of rant*

I think we all have a choice to make, in how we live our lives. At the end of my life I don't want to look back with regret, thinking I wasted all those years stuck in a cycle of misery. I don't want to just exist, as Suzanne Wright put it. I want to live. I want my kids to live. I want them to experience this world, and so what if sometimes things don't go as well as planned? We move on.

A couple weeks ago we went to the circus. Before going, I guessed that K would probably hate it, and B would probably love it. I was wrong. K loved the circus, whereas B was ready to go almost as soon as we sat down. If I had made the decision to leave K at home, because I thought "I could never do that with her", she would have missed out on such a joyous experience! And I would have missed out on seeing it!

Get what I'm saying? Sure, there are things we try that don't work out, but that doesn't mean I just give up on living. That I do nothing, because I can't handle the "what if". I don't want to just exist. I don't want my kids to just exist. And I'm not OK with placing the blame on "autism" (i.e. my kids), because things aren't always easy. If I just existed, I would miss out wins like the circus, and I never want to be OK with that. We live typical lives, like we would if our kid didn't carry any diagnosis, because I refuse to let a diagnosis define us...chart our path in this life. There is no given, no matter what Autism Speaks says. And we can be happy and fulfilled, regardless of what they want people to think.

I don't curse the gods because my kids are on the spectrum. I don't define myself by my child's functioning label, or how much better or worse we have it than someone else. I just live. Like anyone else. I just happen to have autistic children. My life, the things we do, how we raise our kids, is not up for debate. It's not for anyone to scrutinize, or use to put me down. If it looks like we live charmed lives, so be it. I am not going to give up my children's privacy to prove that we know what hard is. What I want to show you is that even though we do go through hard times, there are always good times. Really, really good times, because we keep on living. Because that's what our kids deserve. Because we don't live in fear of failure, even if some giant organization thinks we should, because happiness can't possibly live alongside autism.

Now, I sincerely believe in the importance of insurance reform. I believe in helping families who struggle (not that Autism Speaks does this, mind you.) I want to find ways to mitigate the anxiety so many of our children struggle with, because they live in a world that doesn't always accommodate them. But, do I think we need to make our kids look like walking tragedies in order to illicit donations, change laws, or provide services?

No.

I also wholeheartedly believe it is a short trip from saying our kids are burdens who break families apart, to finding sympathy for those who murder or harm their children. If autism is a Big Bad, then our kids will be seen as a Big Bad, and nothing, nothing good will ever come from that.

I want Suzanne Write to know, I am not going to break. My children are not burdens, not part of an epidemic akin to cancer or AIDS, and not the worst things that could ever happen to me. They are the best things that ever happened to me, and I will fight until my dying breath to make sure everyone knows that. A breath taken at the end of a full life, because I chose happiness. I chose to live. I chose to accept my kids...period. Just as I choose not to support an organization who doesn't see the perfect little people I do, whom I love more and more each day, just the way they are.

Call me naive. Tell me I don't get it. Tell your friends about this idiot blogger you know who hates the greatest organization in the world. Go for it. I've heard it before, and I'll hear it again. But if you stand with me, then speak out. Be the change. Let everyone know autism doesn't sentence you to an unhappy life! That Autism Speaks doesn't speak for you.

I'll leave you with this, because I think it's the most important part: would you ever want your children reading Suzanne Wright's words? Would you ever want your children hearing how some people negatively talk about autism? Because they are who we need to think about...our kids. Even if you believe your child could never understand what is being said, I urge you to think again. There are many adult advocates who have proven you cannot judge a book by it's cover, or a person by the amount of language they seem to possess. Would you want them to read this piece? That is really the only question you need to be asking yourself. I hope your answer is no.

An Orphan with Red Curls, and Time with My Girl.

I love the movie Annie. It was one of my favorites as a kid, right up there with The Wizard of Oz. Our copy was a VHS tape, recorded off the TV. I even remember some of the commercials. The other day when I was doing my daily Target run, I came across Annie in the $4.75 movie section. I was really excited because I hadn't seen it in years, and really wanted to share it with K.

Last spring K and I went to an autism friendly performance of Annie, but there's really nothing like the movie. I envisioned the two of us snuggled up on the couch, big bowl of popcorn perched precariously on her legs, singing along to the songs together.

Well, OK, I would do the singing, and she would ask me not to, but you get the point.

I'm not new here. I know how at home movies go with K. She actually does much better in the theater. Less distractions. Dark, quiet, room (sensory-friendly films are not sensory-friendly to K, because she needs quiet.) At home she sometimes watches a movie, and sometimes wanders around, occasionally coming back to it. She is a snuggler, but only for a certain amount of time before she needs out. Still, I couldn't help but imagine some Hallmark-like moment of sharing a favorite movie with my girl.

It started out like I imagined. Sorta. I made a bowl of popcorn, which ended up mostly on the cushions and floor. I sat on the couch, smushed into a corner, while K stretched out at some random angle. But, we were together, and she was a willing participant!

What I soon realized is that the DVD version of Annie is a lot longer than the "taped from television" version I grew up watching. In the first half of the movie, there were several songs I never even knew existed. And the first half of the movie probably lasted as long as the whole "edited for time allotted" version. Once K's popcorn was gone (and the kernels promptly spilled everywhere, because when does that not happen), she got squirmy. I could tell the movie wasn't holding her attention as it had held mine all those years ago. Eventually, after rolling onto the floor, she looked up at me and said she wanted to go upstairs. I know better than to force anything, so off she went.

I get stuck in this trap, often. Even though I've been around the block and back again, I seem to forget reality. I don't even think about it in the context of wanting something different, I just think about it in the context of how I was as a little girl, and projecting that on K. Autistic or not, it doesn't mean she will grow up the same way I did, or love the same things I did. She's her own person, and maybe Annie was just plain old boring to her.

What I love is K wanted to watch Annie with me. She got home from school and the first thing out of her mouth was a reminder that we had plans to watch it together. She happily sat down on the couch, and cued up the DVD player. We spent time bonding in our unique way.

K not making it through the whole movie doesn't take away from the fact that I really did get what I wanted in the end. I got to share a favorite movie with my daughter, snuggled on the couch together in a "K sorta way", and I did get to sing along while K gave me the eye. No, we didn't make it through the 12(?) hours of unedited Annie, but that doesn't matter. What matters is that we had that shared experience. Instead of getting upset that my almost 10 year old can't sit through a video, I immersed myself in the beauty that is spending time with my girl. Isn't that all that matters? Not how things happen, but that they happen. We got to spend time in each other's worlds, and that's better than any imagined Hallmark moment, any day of the week.

Selfish

I have a confession. Lately, I've been feeling very selfish. Or maybe self-centered? All I know is that my #1 priority is my kids, and with a lot going on these days, I haven't been the best friend. Wife. Anything other than mother (and even that...)

More medical issues have come up with B, and in plain English, it sucks. Hard. In two weeks he will have an endoscopy to figure out if he has Celiac Disease. I won't go into detail about how we arrived here, because B deserves some level of privacy, but I can say he has markers in his blood showing he has a pretty high risk of developing Celiac at some point. That, along with other symptoms, have led his GI to tell me that even if the biopsy doesn't show Celiac, she will probably still want him to go gluten free.

Sigh.

B is already small. He barely eats, and what he does eat of course contains gluten. He doesn't have a big appetite, and so I fear taking away foods will leave us with other problems. Like starvation. I know I am over-reacting in a big way, because he probably won't starve to death, but when I say my kid is fine not eating, I mean it. I pretty much have to force feed him as it is, and that's with foods I know he likes. I've tried GF foods, and I can say with 100% certainty, if B has to go GF, we are screwed.

A lot of his issues with food are sensory based. His rigidness also makes it so that only certain brands and colors of food are acceptable. He eats no vegetables, and fruit is hit or miss, though thank goodness for year round watermelon. I don't even give a care if it's GMO. Anything to get him to eat.

I feel like we just went through a big change with the Epilepsy diagnosis, and we all just need a break. Smooth sailing for a while. But, I guess that isn't in the cards.

On the K front, things are going pretty well, but we are currently doing a med cleanse, and things could change. Basically, nothing is working for her anxiety anymore, and the meds are making her incredibly tired, along with making her gain a ton of weight. Just too much build up, I guess. So we are weaning her off, and getting a baseline. Her doctor is hopeful once we do this, her system will rev up a bit. She won't be exhausted all the time, and her weight will come under control.

K hasn't been off meds since kindergarten. Her anxiety is so bad, the side effects were "worth" it. Until now. I hope the transition goes smoothly, and I am hopeful her better school placement will help, but we don't really know what it will be like with K totally med free. All of this is adding to my own anxiety, and my own inability to look past my own kids to anything else.

On top of that, I am always worried that our perfect placement for K will be pulled out from under us. This is just a constant in my mind, and lately I've been worrying about it more. K is at a school where she is accepted and loved, and where she feels accepted and loved. She isn't forced to change who she is, or made to feel that everything she does is wrong. The focus is on her strengths, and what an awesome kid she is, not what an awesome kid should could become if she just did this, this, or this. I am always concerned that one misstep on my part with our school district (whatever that might be) could equal her placement being in jeopardy. The stuff nightmares are made of, my friends.

So, yeah, there's a lot going on, which means I haven't been pulling my weight as part of  my "village". At least I worry I'm not. I know there are people who expect certain things from me, but right now I can't get out of my own head. I want to, but I also believe you have to take care of your own family first and foremost, and sometimes you need to take a step back and do just that.

I am hopeful that things will settle down...soon-ish? That I can feel more comfortable about school issues, figure out all of B's medical stuff, and find a new rhythm. Not feel like I need to circle the wagons, and be unapologetically selfish. Although I guess I'm not unapologetically selfish, as I feel bad I can't be there for people as much as I'd like.

It's probably just part of being a parent. Not even a special needs parent, just a parent in general. Sometimes you have to take a timeout and focus on your own family, and their needs. And hope people understand.

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.