I Rage

I speak up about sexual assault not because I'm humiliated that it ever happened to me, but because I want other survivors to know that they're never alone. 

I rage against this patriarchal society we're in, one that so thoroughly devalues women, that female rape victims are treated more harshly than the male rapists, because I was once told I'd encouraged my attacker's actions and had ruined his life by telling. 

I was five.

I speak bluntly about the prevalence of molestation within families and spheres of influence because someone has to and I'll be damned if I speak of it from a parent's perspective- this cannot happen to my children.

I mourn when rapists and child molesters get a pass in order to "live normal lives" because the privilege to that same normalcy is denied to victims the instant they are attacked. Why are the guilty lives preserved when the innocent's are tossed away?

Why ask what someone was wearing instead of asking why someone felt the need to rape? 

Why is it that, when women are raped, our pasts are examined to the nth degree, trying to find some pattern of behavior which suggests we deserved to be raped? Why is it that men's lives are looked upon as having potential lost due to a woman pressing charges or making accusations. How in the hell does this make sense? 

And so, I rage. 

I rage for every woman (and man) who has ever felt we have to keep our mouths shut because what the hell is the point in telling? I rage for children whose innocence is lost before they're old enough to speak or dress themselves. I yell for the girls who've been groped by their "friend zoned" guys. I do it for the women and men who have had something slipped into their drinks and have little to no memory of anything after that. I've been in every single one of those situations and they, too, fuel this slow burning rage. 

I rage that I've already had to explain to my eight year old son that females, from the day we're born until the day we die are trained to always be cautious around men. That we, as women, are told to ignore the boys who give us unwanted hugs or kisses- they're only doing that because they want to be our preschool boyfriends and isn't just too cute? That we're forced to hug near strangers and this lends to a lack of feeling in control of our bodies.

That, when he hit a girl, I hoped her daddy told her that my son was an atrocious jerk and not someone who was sweet on her. I'm furious I ever had to explain to him the why behind that.

I explained this to him because I refuse to raise my future men with the notion that rape or assault might ever be okay. As women, we have to fight for the body autonomy which is denied to us early on and  he, as a male, has a place in society to stand up for what is right and not buy into the same misogynistic bullshit which has played out for us in centuries past.

I rage because people think that rape culture and revictimization don't exist when they so clearly do. 

I rage because someone, somewhere, once implied to all of my attackers that my body was theirs for the taking and it was okay to call me a bitch and threaten me when I said, "no." That, when I walk down the street and hear someone catcall me, I always tense up because I know if I don't smile, the words, "fucking bitch" are likely right behind the "heyyyy, girl! You gotta fine ass!" 

I'm spent because this is a never-ending cycle of violence against women and it seems to grow worse yearly. 

I'm so tired of raging. 

We Need to Stop

Anytime a tragedy like the recent murder of autistic Robert Robinson by his mother Angie happens, our entire community blows the hell up.  

Stop. Just stop. 

Arguments are quickly thrown out in articles on blogs and forums. God help you if you get it wrong. Or, even worse, if you get it right. Of course, no admits to the correct party from the wrong party if the correct party is correct. See how batcrap that is?

Just a quick observation list:

Words that average blog/article readers probably have to Google get thrown into conversation. This is how we know the conversation is going downhill. 

People pick apart arguments that barely exist. "Well, perhaps better services in place could have prevented this." "Not the time or the place for this discussion. Your comment shall be deleted by the admins."

If you say that you could see where a parent could have caregiver fatigue, you're called a murder apologist. "The parent should have called CPS, 9-1-1, left the child at a hospital or an agency for themselves. To say you understand any aspect of this parent is to defend this parent and I won't have murder apologists on this thread." What the hell? Anyone ever think that a parent in this kind of situation might be dealing with psychosis? Just wondering. 

If there is an acknowledgement of aggression and autism existing, a lot of people get up in arms. Why aren't we allowed to acknowledge this? And also, why don't people understand that the level of "autism severity" has not one thing to do with levels of aggression? I digress.

If you say that your kid is also aggressive, you're demonized in some form for putting that out there. Unless you're speaking to parents who might get it. It's a rarity, but it happens. 

You can't just say, "This is hard. My heart goes out to this person and his family." Nope, can't include the family. You just have to ignore the hell out of any siblings, grandparents, etc. 

You can't point out lack of services. Murder is never an acceptable option. So why are these two tied together? Why can't we have this discussion at the same time? 

You can't portray autism as anything but rainbows and unicorn farts, I guess. I don't remember seeing that in the diagnostic criteria in the DSM, but that seems to be the party line most people toe these days, including me a lot of the time. Guys, autism is fucking hard. It's hard to raise an autistic child with some aggression thrown in the mix. It's hard to be autistic some days. It's okay to admit this. 

There are massive refusals to see counterpoints/differences of opinions, even if they're only slight. It's okay to be angry- people should be angry this is happening. It's natural to feel hurt that something like this has happened again. But to not be able to see others' points of view? That's blindness. Willful blindness. 

We need to stop. None of this fighting and refusing to admit that things are hard is helping anyone in our community. All it's done is lay more blame in the wrong areas and making more people feel more alone and as if they should hide. And for what?

Making people feel isolated and even more alone isn't why I started blogging. If you ever feel as if you are in need of someone to talk to, in need of services and you know you are local to me (within the Louisiana/Mississippi/Alabama area), email me at deciphermorgan@gmail.com . If you aren't in my area, email me anyways. I know services don't always exist, but I'm willing to try to help you. You can find me on my Facebook page, too. 

If we cannot come together as a community and talk about the hard things- lack of services- for both autistics and caregivers, reasons for aggression (face it- a lot of caregivers are in the dark), and how to prevent another murder/suicide of an autistic and parent- then who do we discuss these things with? Our government?

We help, not more judgement from inside our own community. 

Meet the Pundits

When parents or caregivers go to seek answers, not from doctors, they often turn to the internet now instead of just books. They end up on Facebook pages or groups. These can sometimes be hostile for those people.

There is a trend these days, especially in the parenting community- not just the autism community, though God knows it's happening here- to seek out advice and try to prove your argument or credentials to a profile picture on Facebook. I'm guilty of it. I've done it and, likely as not, will continue to do so.

The beauty of Facebook is that there are millions of people out there who aren't so different than you. The horror of Facebook is that there is always a person waiting to pounce on your answer, however innocently stated, and tell you what a bad person you are for saying something. It's an "all or nothing" approach which I don't completely comprehend.

I call them parent pundits. Some of them aren't even parents, which makes it all the more baffling. In the autism community, they are autism pundits.

Source: www.thefreedictionary.com

Pundits, from what I can tell, attack a lot from their sanctimonious pulpits. They aren't unintelligent by any stretch of the imagination, they are usually very well informed about the topic which they speak. However, I find them to be closed off to any idea that is not their own. Bring up something which does not fit into their sphere of influence or thinking and you will burn. They are ideologues, if you will. Their followers tend to support them with something close to a cult-like zealotry.

An innocent question about anything from feeding therapy, ABA, to infant circumcision can have a person flamed by a pundit who doesn't want to educate, only spit fire from his/her bully pulpit, and then the attack is blown up by the pundit's followers who circle around and attack some more.

Tell me, how is this helping anything? Usually, the pundit defends his/her actions by saying that this is educating the parent. I disagree and will argue that the pundit loses the target audience (the parents, in this case) when he/she attacks because the audience feels verbally flogged. Sometimes I wonder if pundits remember that there are actual people attached to the screens on the other side, reading their militant diatribes against them.

Militancy can be virtue, but when people are coming to someone for help and getting flogged for it, it ceases to be an asset. Camps of thought are formed based on differences of opinion. To me, that's dangerous. To me, this means that there is very little gray area where people can meet in the middle.

Parents, when you seek out help, be careful what you are seeking. Be careful who you seek out for answers. If you feel as if you're being attacked by a pundit, move along.

They are not worth your time, emotional energy, or carpel tunnel syndrome.

Pundits, get over yourselves. You think that you're making some sort of change in the world. You know what happens when you keep screaming about your experiences and don't allow anyone in for additional input? People change the channel and move on. Personally, I don't care for being attacked. Debated, yes. Being razed over virtual hot coals? No thank you.

I'm going to keep doing what's best for my very happy child, as most of us are, and walk away. No one likes a zealot. Well, except for cult-like followers.

Is there a cult for bacon and cake?

Excuse Me

I'm afraid that I wasn't clear with my post yesterday. That wasn't meant to be an incredibly negative post, believe it or not. I'm usually not a negative person, but a "strong" person. Or, so I'm told. I'm not sure if I believe that.

I was told that what I'm jokingly referring to as "Facebook Island" is self preservation. What I didn't delve into are all of the other reasons I set up that account.  The reasons that really don't have a thing to do with neurotypicality, other people's lives so much, or what is being deemed by some as pure negativity.

For the wonderful outpouring of support I received on my pages yesterday- thank you. 

One woman wrote me a message, which, in the beginning, summed up my current feelings perfectly: "I don't know you or your life..."

That is at the crux of how I feel for the people who want to call me negative. Who want to say that I need to put on a positive spin because "sometimes life sucks." Yes, life sucks sometimes, but what happens when you feel like you're at the end of your rope or beyond and it has nothing to do with an autism journey?

I was criticized for deactivating my personal Facebook page by people who don't know my life, but think that they do. I was judged unfairly.

Let me break this down... I've been on medication for the last two weeks to shrink my endometriosis, it's called Megace. I've talked about it on my Deciphering Morgan page. I mentioned it making me "nuttier than a fruitcake" in yesterday's post.

It's a drug which was supposed to shrink the endo in my body. It's also a drug which is used to treat cancer of the breast or uterus (i.e. tumors). I was taking it three times a day. 90 pills in three weeks is what I was supposed to take.  Until I couldn't take the side effects any longer. Click the hyperlink on the name, it gives you the lovely list of those.

What I left out is how bad the side effects have been for me. How I've been muscling through as best as I can, but I can't any longer. How I've now had to come off of those potential surgery avoiding drugs because of the fact that they were causing me to be incredibly fatigued, swell horribly to the point of more pain, and, the have uncontrollable massive anxiety attacks and the worst suicidal thoughts which even my anti anxiety drugs could not touch. How the pain was made worse, but I've just had to learn to live with it.

How that's the reason, in addition to so many others, I had to retreat from "full Facebook" for one week- and it didn't even last that long. Just one. I neglected to mention this because it's no one's damned business but my own. However, I figure that if one woman reading this is investigating it versus another drug or surgery for endo, she needs to know what it can do. Enough women have messaged me in the past two months about drug or other medical treatments for endo; this could be valuable information.

I've retreated from my friends and even family because I don't want them to see or know me like this. I don't want to be that asshole from the Giving Tree who kept taking until there was nothing left to take. Plus, there's that whole crying thing I've been doing in the last week and a half. Who wants that?

I prefer to be proactive enough about my life to know when my mental health isn't good and get help. Take a bit of a social media break. Find a happy place. Find an outlet. Hug my kids. Know what's worth living for.

But no, that's wrong.

This isn't "leaving anyone out of my journey," this is self-preservation and knowing when enough is enough and being afraid of even harsher judgement.

At the end of the day, I know where my positives are- my children, my husband, and my real friends. You know, my support network?

Sometimes, it's necessary to talk about things which are not pretty or uplifting. Kicking people when they are down is probably the lowest form of inhumanity I know. It does not move you higher up some imagined social media ladder- it only makes you look like a thoughtless jerk.

Everyone is going through their own journey. Some share it with a mediocum of grace, others do not know how. Choose your category.

Excuse me for telling my truth.

When Nightmares are Reality

I had a dream that, at first, was so real, I nearly believed it to be true. We were at the beach. I was healthy, playing with the kids, running around, laughing, free of pain and everyone was smiling. My mind then whispered, "This is a lie. You need to wake up." In the dream, a tidal wave filled with pain washed over me. It tore away the happy moment, the laughter, and the smiles. Then everything went black, cold, and I was in gut wrenching pain.

I woke up drenched in sweat and found that the tidal wave was real. I was in pain, a lot of pain. And that pain was washing over me like a tsunami.

That dream is my reality.

Dreams are, very rarely, reality. Unless they're nightmares.

I keep hoping and praying that this is all in my head.  That this is just a nightmare. That this is psychosomatic, that this really isn't happening. 

But I know it is real. 

It is happening.

I am not making this up in my head.

I'm certainly not dreaming it. 

Illness of any sort will have an effect on any person and any family. In an autism family, like mine, I think it's harder. We already feel like we've been running a marathon for years that is never ending. The finish line, as soon as it's in view, recedes back into the distance (thanks, regression, you're an asshole). Throw some illness in there and all sorts of things pop up. Like Morgan perservating on the idea of me dying, and him scratching his head (new stim) until it bleeds. Then Bay had a potty accident at school for the first time the other day and who has been exceptionally sensitive lately. 

They are both terrified and I can't blame them. Their mom isn't their usual mom right now.

My biggest fear is not being able to take care of my children.

When we noticed autism in Morgan, one of the first things I remembered thinking is, "I can't die. I can never die because no one will be able to take care of him the way I do." I find this sentiment to be true for a lot of special needs families. I try not to think about it, but it's always there. 

That dream was easy to interpret for me. This pain washes over me in waves, stealing moments that should be, by all rights, mine to enjoy. It knocks me down, tears everything apart, and even knocks me out. It's drowning me. 

This is scary. 

I am trying to be so damn brave in front of the kids. To not break down. But that is incredibly hard when I can't escape my own body.

*Editor's note... I promise sometime soon I will get back to talking about autism. I swear. It's just that right now, this is what is going on in our life as a family and it's the vortex that sucks everything in. This blog is also my place to vent. I won't make apologies for that. 

I Cannot Break

I am writing this through tears. I am in an unconscionable amount of physical pain. Today alone, the pain has been so severe that I have vomited, fainted, and then fainted after I've vomited.

Something is wrong with me.

I cannot break. 

I am mom to Morgan and Bay. I am Mom. I am wife to Thomas. I am the axis upon which their world spins. But something is not right.

I am in pain. A lot of pain.

I cannot break.

I was promised relief three years ago when they made me less than a woman, when I had "everything" that makes me a woman taken away. I wasn't okay with this, but I did it to watch my boys grow. To grow old with my husband. And now, it seems, one of those monsters is back. And it feels like it is eating me alive.

I'm so mad. 

The past 72 hours or more have been pure hell. I can't eat. I can barely sleep. It hurts to actually laugh. I'm scared to walk outside and I refuse to drive because I might lose consciousness.

I cannot break. 

I am in a lot of pain.

My kids are scared, very scared. I keep explaining that Mom can't die, that I just need rest. But how does it look to them, at the ages of eight and five, to see their mom passed out on the floor? To find me vomiting? To see me on my hands and knees, crying, and begging God to please take away my pain?  To see their mother crying uncontrollably because she just can't escape the hell that is her own body?

They've seen me sick too many times. This isn't right. No child should have to experience seeing their mother in a hospital. This time is different than the others, but they are older now. They remember last year. They know that when Mommy is feeling really awful, things aren't good. They are anxious.

I say I cannot break, but I feel so broken. 

I'm so angry at my body. And hurt. Why would it do this?

I have an amazing support system, both virtually and in real life, I've discovered. When I was in the ER last Sunday, I kept getting texts from people I've never met in my life. Yet, these people cared enough to ask how I was doing, how the kids were, how Thomas was handling things. If you're reading this, please know that there will never be enough "thank yous" to express the amount of gratitude I have for your act of kindness.

I can't break any more than I already have. 

I feel, right now, like there isn't much left to break.

Don't be the mom I want to shank

This is a topic I've been kicking around in my head for a long time, but I have not wanted to really follow through on writing because it's kind of mean. I know I will come off as a sanctimommy at some point, but damn. Just, damn. Some things need to be said, okay? Keep in mind that I'm bouncing around from special needs parenting to typical parenting with this rant, please.

pin this

I asked for input from other moms and received big time. 

For starters, if you take your child to the pool, interact with that child. Go on, do it. It is not my job to watch your child and make sure he isn't drowning, splashing, or krakening the hell out other children. Don't be pissed off whenever I finally get fed up and bring him to you and expect you to do something other than read your magazine, okay? This child came out of your uterus, you get to take care of him, so do it.

Playing off of that, don't ignore your children. It's rude, for starters, and it shows the rest of us the quality of your parenting or lack thereof. Want to know what ignoring your children looks like? Talking about them like they aren't right next to you. Or flat out ignoring requests, bad behavior, and not knowing what's going on in their world. Stop it.

Don't take advantage of people who don't ignore their children and assume that they would love to babysit your spawn. "I'm tired of being the babysitter for the neighborhood because I pay attention to my own kids," says my friend Amanda from Confessions From HouseholdSix.

Don't assume because my child is autistic that he's stupid. Or that because he's wanting to play with your younger child that he's incapable of playing with your older child. Maybe your older child is a jerk.

Get over being a victimommy. Autism and other special needs aren't pretty, I get that. However, your child's autism isn't about you. I know that meltdowns, IEPs, visits to the doctor, etc., are a bitch. But this, at the end of the day, isn't about you. It's about your child. Feel free to cry foul to people who know you best but if you're just meeting someone, don't do that. You sound like someone I might want to avoid.

On that note, venting is always good. There are plenty of Facebook groups, therapists, etc., if you don't have friends. But please, practice some decorum, especially if you're doing this online. 

Of course, sometimes it's the simple things that piss us off.  "Talking. They should just refrain from talking," says my friend Flannery from The Connor Chronicles. She gets it.

Stop the comparisons with special needs. We are each on a different path but on the same planet. You don't know what I go through any more than I do; there is no sense in telling me I have it easier or harder than you and then listing the reasons why.

Stop letting your children get away with asshole behavior. This applies across the board to all parents. I'm a firm believer that parents create asshole kids. You allow you child to get away with asshole behavior once, twice, three times without saying much and guess what? Your child ends up being "that kid" we all tell our kids, special needs or not, to avoid. And you end up being that mom we want to shank- repeatedly.

Saying, "all kids do that." I've heard it, my friends have heard it, we all hate it. When we are discussing our autistic child's habits/obsessions/behaviors and another parent (the clueless wonder) says that, we all feel like that parent is trying to invalidate our experiences. If little Johnny is still obsessively lining up cars at the age of eight, flapping like a bird, and can repeat Nemo line for line... he might be autistic. So bite me.

Offering up prayers or unsolicited advice will make me want to slap you. I've actually had people offer to pray for my son's autism to go away. What is that? Pray for my sanity to stay somewhat intact while I raise him and his little brother, pray we get our house sold soon so I can move out of this apartment, but please, don't pray for my son. He isn't sick, he's autistic.

Giving looks of pity. 'Nuff said.

Allowing your NT kid to have fewer manners and social skills than my autistic kid is bad form. Really. I don't feel like I should have to elaborate, but here we go! This goes back to allowing your kids to be assholes, too. Teach your children manners, it isn't hard. Teach your children that it's mean to be mean. Teach them to respect other people. Want to know how to do this? Practice what you preach.

Don't pull your kids away from my kid when you hear the word "autistic." You're teaching them that autistic is bad. You're telling me that you're a bigot. And an asshole.

Starting a sentence with, "I would never allow my children to..." which is in reference to my child still carrying a lovey, using a pacifier, wearing second hand clothing, or eating food which is probably riddled with dyes and GMOs. Guess what, asshat, I'm doing a lot of things I never thought I would, either. Don't judge. I'm willing to bet you hide in your closet and drink cheap boxed wine at night. That's not organic, just sayin.'



I'm leaving a lot out, but this was turning into a book. What I'm getting at is just be a good person. Be a good parent. I know I practice unconventional parenting, but my children are polite and fairly pleasant creatures. Most of the time.



What would you add to this list? What parenting practices are you seeing that drive you insane and would cause you to not want to interact with another parent?

People like you

Hey, you. You there, not raising a kid on the spectrum.

I know that it must look as if I "play into Morgan's Autism," but you saying things like this or you leaving comments for me about how I need to let him be a kid really just pisses me off.  You think you must know what this is like because you've spent some time around him? Or read about him? You're full of crap.

I know that I've been full of ansty rants for most of the summer, but there are reasons for this.

I'm tired. I'm tired of the looks and condescension. I'm tired of the crap advice coming from people who, though they might have known me my entire damn life, don't know my life. And who make weird observations like "it must be the moon cycle" or "autistic children can sense things.. like animals." I can sense things, too... like when someone is an ass.

My kid's Autism? Not about you.

My son is a kid. An Autistic kid. Some days, he seems to waves that "A flag" really proudly and high in the air. I let him. To deny who Morgan is would be to deny him a reality that we live in. A reality that, while it's not easy, isn't horrible. So, I let him chug, whistle, flap, and script those train stories. Who is he hurting,
anyway?

I'm tired, too, of having to remind people to cut the crap and stop using the word "retarded" around my child and me. Is it that hard? Would you say the word "nigger" around my biracial cousins? Hell no, you wouldn't. Use some common sense, please. Your ignorance exhausts me.

As the parent of a special needs child, I somehow feel like it's my duty to inform as many people as possible about how to speak to parents like me. Or to people like Morgan. To treat us as humans, but humans deserving of respect. This isn't a PC thing, it's a "don't be a jackwagon" thing.

Put yourself in my shoes. What would you do?

For now... I'm enjoying my summer with my child, but I'm tired. Of people like you.

*Don't make this about you, unless you know for sure this is about you. 
**I didn't bleep out the two slurs used because I find them both equally offensive.

Culling of the herd

cull  (kl)

tr.v. culled, cull·ing, culls

1. To pick out from others; select.

2. To gather; collect.

3. To remove rejected members or parts from (a herd, for example).

n.

Something picked out from others, especially something rejected because of inferior quality.

 

 

 

 

I've always been a bit of a culler. I have pack rat tendencies, so I know, in the back of my mind, that I must rid myself of excessive "baggage" in my life. Whether it's clothing, books (okay, I suck at ridding myself of those), shoes, paper, or even friends, I collect things. It's odd to refer to people as things or objects to be collected, I know. However, one thing having children and especially having a special needs child has taught me, is that sometimes people must be rendered as inanimate objects. Sounds hard, right?

 

To render someone as such takes away the emotion necessary to cull them from your life collection. I'm bad about this. That is, I put more emotion into one person than is necessary. I give that person more credence in my life than he or she deserves.  Therefore, if you examine someone critically with as little emotion as possible, you might upset yourself less. Again, I'm bad at doing this. However, when I actually set out to do it, I'm merciless. 

I've culled many people from my life. They needed to go. 

 

One person, a "friend," couldn't take me "ignoring" her at my son's birthday party. She said that I spent too much time talking to other adults and that I basically just skimmed over her for the two hours of the party. Sound ridiculous? You bet it was. She also could not take that I was "always" sick. Hello, autoimmune disorders!

I've culled family members. My biological father in particular comes to mind. I could say this wasn't a big deal, but it was huge. I mean, he's 50% of the reason I'm on this planet, correct? But his negativity, lack of insight, alcoholism, and wife were more than I wanted to subject my family to.  His wife was actually the deal breaker for me. 

Reasons for culling in life vary, don't they? What might be a big blow up with one person will be something that has simmered for a long time with another. 

 Relationships are supposed to be give and take, not one way streets.

When I think of culling my herd, I don't see it as getting rid of "defective" people. Rather, I see it as ridding myself of people who bring me down, don't enhance my or my family's life in any way possible, or people who I am beginning to loathe being around. If this sound hateful, you should see it in my head. 

I might have become slightly stand offish about making friends in the past few years. I wonder if people think I'm parenting correctly because slurs have been thrown out. I think about how others parent their kids. I also sometimes think about the gossiping which invariably goes on behind backs in groups of people. 

Recently, it came to my attention that a group of people I once thought very highly of are nothing but facades of caring individuals. These people put themselves out there to advocate, inspire, and illuminate, if you will, everyone who "knows" them. However, scratch the surface and you find utter crap. 

When illusions are shattered and reality comes crashing in, icy cold water seeps into your veins. That person you thought you knew, even if it was their projected image, is so far from the truth that it's nearly gut wrenching. Be wary of people who want to lob words and then duck and cover. Or hide behind someone else. Or claim that you're guilty of something for which there is zero proof. 

People who clamor for attention are scary and dangerous. They promote mob mentality. 

 

That's all there is to say about that.

 

 

Self indulgent post

*This is not to offend anyone within the community. This is only my truth, right now this second. Thanks.

I tell myself constantly that Autism isn't the worst thing to have happened to our family. Things could always be worse. One of us could die for Christs sake. Or have cancer. Or another possibly terminal illness.

But during a week like this, when the walls feel like they're closing in... when things are piling up... Autism, at times, can suck for a parent and, I'm guessing, for the Autistic. Being different isn't easy. Our family knows that. But for as much as this post is about Morgan, it's not. It's about me. His mom. His caregiver.

I love my son. I love everything about him, including Autism.

But there are times when I wish all of us didn't have to deal with the land mines that come along with childhood Autism. The distress on his face when sensory overload sets in. The meltdowns... Him shoving, headbutting me, and telling me, "you could be a better mommy!" Just like he did last weekend when I was trying to calm him down. It hurts. It breaks my heart to see my son, my world, so discombobulated and I can't do anything to help him except for what I'm already doing. Helping. Comforting. Loving. But it doesn't always feel like enough.

Then there are the land mines that others set out for us. Those are what I hate the absolute most. This week, Morgan's case manager wanted to set up an IEP meeting. It'll be for the rest of this school year and into the next. I knew we needed one, so no biggie, right? Wrong. It's an incredibly big deal when the school pops it on you that they are considering moving your son into the resource room. I don't even know how to process this except to research successful cases and model our case after those, if possible. To ask for a 1:1 aide. To demand he be evaluated for assistive technology. To be glad that they, too, think he needs more supports.

But I'm upset. Why hasn't anyone mentioned this to me before now? This is important. Why does there seem to be a breakdown in communication?

Then there is the insurance crap. We began the application process this week for the Medicaid waiver. We went to the evaluation yesterday and I brought with me the past five years worth of paperwork on Morgan, who attended the meeting with me (it was mandatory). During the ICAPS portion of the evaluation, I had to (painfully) go over my son's worse behaviors. Things he can't control, all within his range of hearing. I hated that. The boom was lowered, too, when we were told that the wait list is eight years long, Eight years... by the time that Morgan will reach eligibility for services, he'll be nearly aged out. Still, it's a grain of hope, right?

In my fantasy world, Morgan doesn't actually change. The meltdowns, stims, reading problems, social skills "deficits" never go away.  Instead, society changes around him. Insurance is there. Special education is acutally special and geared toward teaching our wonderful children. When my son does have a meltdown, strangers offer assistance instead of accusatory stares and ugly things to say. Kids offer to play games with him. Grown ups say, "What a sweetheart!" instead of staring when he tells them spontaneously "I like you."

In this imaginary place, I sleep enough and my house stays clean because I am never depressed or anxiety ridden over things which I cannot control. I stop crying. My kids see a happy mom, not this angry person who would willingly walk down a street naked if it meant that her son would get services if only it meant that her family wouldn't go without something they needed. Like dental care.

In this place, there is Autism acceptance. There is no calling Autism insurance "pet projects." There is no slashing of special education because some jackasses in Washington can't get off of their high horses and just friggin agree on a budget. People open their eyes to what is front of them instead of assuming that their "normal" is the only kind that matters.

I know that those things are imaginary. Because I've been watching and participating in this fight for nearly six years now. It's been two since Morgan was officially diagnosed. Six since we first saw Autism and began asking for answers.

I want to know... if it never gets easy, does it ever get easier to handle? For Morgan? For me? For any of us? For as hard as this is for the parents and families... what does this feel like for the Autistics?