It's Not You, It's Me- Sort Of

*Earlier this week, I deactivated my main personal Facebook account. I'm running my Deciphering Morgan page through another account I set up for autism only people and people that "get it." I'm not as active on that profile. Thus far, I'm not in any of my private groups, I haven't liked but a few pages and I think I'll keep it this way for a while. 

I'm on Facebook Island. It's completely selfish.

Judging from the pm's I'm getting from old friends on my DM page, some people think I might either be (a) dead or (b) mad at them.

I'm not either. I'm just in need of a break from neurotypical bliss and from first world neurotypical problems, among other things which I'm not at liberty to talk about here.

I'm being selfish and I'm not even apologizing for it. I should have done another profile years ago.

No offense, but I could give a crap about what paint color you're choosing or what little Becky did which is certifying her as a MENSA candidate this week. Harsh? Yes. Honest? Oh God, yes. Sometimes I feel like screaming, "I wish my first word problems were as mild as yours!!!"

It's hard, for me, as the mom of an autistic boy, to see pictures of kids that Morgan used to go to school with or play with when he was really young doing things that he can't do because homework takes up so much extra time. Or because we don't know how he'd do and honestly can't afford to figure it out. Or just being given the chance to be a kid with other kids outside of school. You know, play dates?  Or when they're doing things which aren't Thomas related. I love that my kid has a passion, but I wouldn't mind if he would also love to talk about something other than those trains.

It stabs when I see pictures of kids younger than Morgan on bikes without training wheels. Which, other than the adult trike he test drove once, he's never ever been able to do.

Or, when someone posts a pic of their son who used to attend school with Morgan having a sleepover, or a friend over. I'm not saying that Morgan doesn't have friends over ever, but the main friend he does have over who "gets it" is about to move an hour away.

"But Jessi, you're also the parent of a neurotypical kid, doesn't he matter?"

Yes, he does.  He matters just as much as Morgan.

Thus, I'm caught in two worlds. Every time I open Bay's notebook from kindy, I have this funny stab in my heart because his handwriting, that emerging skill, is neater in some ways than his brother, who is three years older than him. His coloring is better than Morgan's. Give that kid a paper and glue project and he nails it in a way that, due to a lack of fine motor skills, Morgan cannot right now.

Bay told me the other night that he's afraid of being smarter than Morgan one day. That he's afraid his brother will hate him. And that he wants to stop school because of that.

Except I think that Bay is sad sometimes at school. He says (and this is confirmed by a couple of the support staff at school), that no one really plays with him at recess. So I'm worried, as his mom.

I feel like it's Groundhog Day, where I'm trying to "teach" social skills to a child in order for him to make friends, although Bay's been on about a hundred play dates.

You're never supposed to compare children, whether they're your own or yours to someone else's. But I do it and it kills me.

I'm not bitter or mourning a life I've never had. I'm just, for right now, choosing to ignore the lives that aren't mine.

And, really, did you want me to be watching for signs of autism in your baby/home videos? Because I was, I really was. That's what we autism parents do, you know, we watch for signs of one of our own. Mention that your child has a an "obsession," and we're on that like hotcakes. Post pictures of a kid lining things up? Yep, we're talking about it.

So you see, it's not so much me... it's you. I'm being a bigot right now in that I can't be around anyone but those who have autism or other disabilities in their lives, even though I'm not saying much when compared to how much I normally say. I also was afraid of offending people, for a change. I don't want to do that.

I know it's understood, but I feel the need to clarify. You cannot help that you have neurotypical only kids any more than I can help that I've been blessed with an autistic child and a neurotypical child.


For now, I'm staying on Facebook Island. At least until I'm done taking Megace and this crap stops making me nuttier than a Christmas fruitcake.

All Autism, All of the Time

If you're autistic, or the parent an autistic child, you'll likely understand exactly what I'm about to say. If you're an autism blogger, like me, you'll understand this even more.

My life is all autism, all the time. There is not a single second, minute, or hour of any day that is not dedicated to me thinking about it. I rabidly read about it. I will discuss it with anyone, willing or not. "Once you tell one person, and then they tell one person, and so on, and so on..."

People in my life, without autism or not 

touched by it, 

don't get it. 

Why would they? Most of my closest friends get it- probably because I've hijacked them onto the autism train. I've force fed them the information, they know Morgan and other people who are autistic, or they are willing to listen. I also have a great group of autism parents where we live, many of whom are strong advocates.

If someone calls me in the middle of the day, they are highly likely to hear my keyboard clacking. This is because I'm either writing a post about autism, private messaging a mom or dad about autism, or (rarely, but it's becoming more frequent) giving a quote about how autism has changed my life. I don't feel as if I can tell the caller that I can't talk because I want to talk to them, but I am also not willing to tell the person I'm pm'ing that I'll get back to them. I'm too afraid of what I won't come back to.

Those private messages, more often than not, are a lifeline (I'm told) to a parent in need. Sometimes it's something as simple as a question about an Individualized Education Plan (IEP). There have been multiple instances where I'm talking a parent back off of a ledge or cliff when they've had to consider hospitalizing their child and they feel as if they are now (the parent) suicidal.  No one needs to feel alone and in the dark. This is a service that I provide free of charge and am happy to do so. I also discuss SIBs (Self Injurious Behaviors), aggression, and several other things that these parents aren't comfortable having posted onto my blog's Facebook wall or in any other place due to identifiers.

My life is not understood by many, how could it be? I'm not getting paid for any of this, but I'm thrilled to do it. If I can help as many people as possible, then I'm happy to do it. I've been in these parents' places too many times to count without an outlet. Everyone needs help without judgement. If I cannot help them, I research the right places which could.

There is no escaping autism. 

Autism is your child and your child is your life. 

You never give up on either.

Autism is my child. My life. And while it isn't a bad life, it's an all encompassing life. It is what it is. If you can't handle me talking about it, don't write, call, or visit. Just don't interact with me at all. Don't tell me you want to understand and then chide me for explaining, because then you're going to get a big "Piss off" from me.

For those that say, "Shut it off. Take a break. Enjoy your family." Allow me this:

You think I don't already do that? I do shut off my computer, but I keep my phone on me in order to refer out that parent who might be on that edge of desperation.

Take a break? What the actual hell is that?

Enjoy my family? Every. Damn. Day.

For those that don't get why I'm so tired at times (all the time), here's a small breakdown: here lately, Morgan has had some trouble sleeping. His SIBs, outside of school, due to the environment at home (read: my health issues) are a bit high. We're having some aggression issues at times- at home. Morgan's had a few anxiety attacks at school. I'm also hyper focused on Bay and how he deals with all of this because he's five and I need to split my time equally, which never happens. I worry all the damned time. He's part of the autism family, too. And sometimes, he doesn't deal well with it all. He's high anxiety sometimes, which is hard. However, Bay's in an inclusion class at school and it's helped him learn soothing techniques for his brother. So, he too, is all autism, all of the time. But he doesn't seem to begrudge it any more than I or his father do.

I'm probably, when you ask how things are going, to tell you about those things, or rattle off some incoherent bullshit. Because that's what's going on in my life. And, frankly, I could give a shit about your Pampered Chef party, although it sounds cool. But I'm not tuning you out... I'm waiting for the other fucking shoe to drop.

When you call an autism mom, be prepared for her to be tired and to be half listening. Sometimes we're juggling 1,000 things at once and preparing for the school to call at any minute and for the special alarm ringtone for the school to go off. I know I am.

If you can't handle any of this, then don't bother trying to join in. Autism, especially parenting an autistic child, is a "jumping in head first" method of parenting and I'm one of those parents who not only jumped, but dove. 

I live it, eat it, breathe it, and write it. 

Autism is him. Autism is us. 

And Now, A Rant About Jack Wagons

Perhaps you're one of them or know them- in real life or online. These are the people our parents warned us about.

They always "know" more than you. They always want to "correct" you- it doesn't matter the subject. They're usually wrong (because I said so). They back up this "knowledge" with "I have a degree in ---" though evidence of the knowledge obtained via that degree is clearly not showing. If you post something well meaning, they have a negative response to it, no matter how well meaning the subject matter. They don't have the sense God gave a lemon when it comes to keeping their ever lovin' mouths or keyboards shut.

Basically, I'm speaking of the grown up assholes of the world. The "educated," or even uneducated jack wagons. The ones who wouldn't know good sense, etiquette, and a dictionary if you threw it at them.

You know, why are people like this? Why?

I understand debate. I understand differing opinions. I get that. However, why jump on something which isn't begging for your opinion, your "two cents?" Especially if you can't articulate it? Scroll past, trolls and other people!

This extends to politics, special needs, education, opinions on vaccinations (why the need for insults on either side?), diet, exercise, lifestyles, etc. If you disagree with someone, there are ways to do so respectfully.

I'm perfectly guilty of being imperfect. I've written about, posted about it, and spoken about it many times. I'm guilty of being a complete asshole on threads. However, if someone is in my "friends" list, I'm blunt when I disagree and will actually take the time to articulate why I disagree and state, "I'm sorry, but I think I will have to agree to disagree." I usually, however, hide the person's posts or scroll right past said posts. I'm not sure why other people don't do this. *Please note, I did tell someone, who made inaccurate observations about my "charmed life as a stay at home mom" and also, a racist comment, last week, "F**k off. You don't know me or my life. Go eat a bag of d**ks." So, yeah...

I'm doing a bit of fall cleaning right now. I've even considered taking a social media break- which likely won't happen. The cleaning, though, that will happen. Too many people piss me off on a regular basis in both the blogging world and otherwise. I'm sorry, but my tolerance for bullshit this year has reached its limit.

I have more important things to do, write about, and focus on than the jack wagons in this world.

Should you find yourself in the same predicament as I, do a thorough cleaning. Not just on Facebook, but take a hard look at who matters in your life. Do they bring as much to the table as you do? Would  you drop everything for them in a time of need and vice versa? Are they toxic for you? Are you possibly toxic for them?

Bottom line: No one has time for oxygen thieves and people who are about as much fun as a bucket of mad assholes.

He Is Them

My husband and I were lunching at a little cafe in our downtown. As we were waiting in line, we noticed that the group in front of us had kids a little older than Morgan. We instantly recognized those kids as belonging to our son's tribe of people- they were autistic.

They were out with their aides after coming from an anti drug rally and were from the school Morgan is zoned for next. He won't be going there, but that's beside the point. We struck up a conversation, as I always do when autism is present- I can't help it. The paras were responsible, it turned out for the "severely impacted and verbal to moderately autistic and verbal or wheelchair bound" kids. They asked if Morgan was verbal, which always baffles me- being verbose gives no indication of a so called functioning label. But I digress...

The aides were helping the kids learn life skills by ordering for themselves, paying for their food, and tipping the servers. They were displaying good behaviors, I thought, but yes, they were displaying "typical autistic" behaviors. Hence, Thomas and I recognizing members of our son's tribe. You could say that our A-dar was on high alert. We were very happy to see these children (fifth and sixth graders) out in the community with their lovely aides being taken care of and, most importantly, being treated with love, respect, and dignity as they demonstrated the life skills they were clearly learning.

We placed our order and sat down in the front. I could hear the lively group in the back, their paras redirecting them with table manners; everyone seemed to be having a nice time.

Some women sitting behind me were gossiping about that awful letter making the rounds about the lady who intends on "educating obese children." I let it drop that I'm an autism blogger and all of my friends and I were super hot about it as well. If someone were to give my large kid that note? Oh honey. We all nodded.

Lunch finished up, Thomas went to refill our cups... and then "it" happened.

Our server came by to bus our table and for whatever reason, thought it was okay to say to me, "Shew! Just watching them kids made me tired! Can you imagine dealing with something like that e'ryday?!"

I looked at her levelly as I stood up and answered, "Yes. Yes I can. My son is one of those kids. I live with that wonderful life every day. He is them. And I can't ever  imagine saying something like that to someone like me or anyone else..."

She scooted off, shocked into silence. I turned to pick up my purse and saw the group of ladies at the table behind me and realized they'd heard every word. They were all grinning at me. I'm supposing I said the right thing, for once.

My point in telling you this is that those people are just that- people. They were out in the community, at a cafe whose business depends on everyone patronizing it, including autistic people and their paras or parents. How dare someone remark to a perfect stranger something like that? And in that tone, that language? As if that is not an okay way of being?

And guess what? Autism is everywhere. So, be prepared for it. Don't ever assume it's okay to crack a joke or make a comment to a random stranger about a group of autistic kids. You never know if the stranger you're laughing to is the proud mom of an autistic kid who will willingly write a letter to editor of your city's paper about your cafe.

This life isn't easy by any means. But God, it's worth it- he is worth it. My son, and every single person who shares his diagnosis or some other "different ability" deserves the respect to not be fodder for gossip or a joke.

So, thank you, server lady, for once again giving me the drive to write about social injustice. Here I was, getting complacent about acceptance and thinking that it wasn't a problem in our little community. I guess I was mistaken.

The Permissive Culture Behind Bullying

Nothing licks the red off my lollipop faster than a meme or status saying things like, "We will never be able to stop bullying" or "Teach kids to fight back, anti bullying laws are creating a nation of victims."

Perhaps this is because I'm a special needs parent and those zero tolerance, anti bullying laws, protect my child and thousands just like him.

Let's get some things straight, shall we?

Bullying is first taught at home. The culture of bullying is then further propagated by people who look the other way or even encourage it. You might say you aren't one of "those" parents or people, but honey, trust me, you are. It is highly likely that you're telling your child, "That weird kid is just that- weird." You're teaching your child, without ever know about the kid who your child is bullying that it is okay to make fun of or even beat up that other kid.

Don't think so? Allow me to demonstrate.

Morgan was bullied pretty severely in first grade. Not just verbally, but physically. This was an ongoing issue throughout the entire first semester and part of the second. At one point, he had his ass thoroughly kicked by two boys, gravel shoved in his mouth, and was told he was retarded. A third boy watched for teachers. Two of the boys, the ones who were caught, were suspended from recess for two days, if memory serves.

I requested a conference with the parents. It was denied by them. No one wanted to be told that their little darling had beaten up a special needs kid.

Another time, Morgan got into the car, smelling of urine. I thought he'd had an accident and I had not been notified, which was odd. It wasn't until another mom told me that her child had been peed on that I thought to ask Morgan if the same thing had happened to him. He answered in the affirmative. I was livid.

A little boy spit on Morgan in music class. Now, that raised some eyebrows because there were so many witnesses.

Throughout the semester, Morgan kept coming home with bruises- deep tissue bruises, all unexplained except that he was "clumsy." He kept telling me that "those boys" or "that boy with the red coat" were punching him or jabbing him in the halls on the way to class. I asked if he'd told a teacher, which I knew he had. Apparently, since he wasn't very articulate, no one, aside from his wonderful homeroom teacher, believed him. And so, I raised hell.

This kept going on, despite me raising hell. And believe me, there was a lot of hell raised.

A lesson on genies came up. I asked Morgan one night, if he had three wishes, what would he wish for? "Not getting picked on, walking to class and not getting tripped, or hit, or punched and biffed into the wall, and no one making fun of me."

I'd had it. I called the principal and demanded she actually speak to me, but not before I raised more hell at the school with her vice principal. I asked her to put herself in my shoes, as a parent. How would she react? And would she define any of this as assault instead of bullying? Because I damn sure was.

I also offered to press charges against the school. There were plenty of grounds for me to go on.

Suddenly, Morgan was happy. I asked why? He said that the bullying had stopped. No one was calling him names. The bruises stopped come home. The nightmares didn't stop, but the real nightmares, the ones from the daytime, did.


Now, after reading this, how would you respond as a parent? That school had a zero tolerance stance on bullying. I wasn't the only parent jumping down throats. I was told the only thing that had happened to my son which could be deemed true assault was him being spit on. What a laugh.

If you have been the "me" in this case, know your child's rights and keep raising hell. Don't stop. Schools can be held liable for this, and so can the other parents.

So, yes, perhaps we are creating a culture of victims. However, the some of the victims are the actual bullies because their parents are teaching them that this is okay. Whether they state that emphatically or not, the permissive air is still there. They might think that they aren't doing this, but how many times have they made fun of someone in front of their child? Or said, "just kick his ass!"

Do me a favor, if your child is ever accused of bullying another child, don't shirk your moral obligation as a parent and human being and turn down a requested conference with that other parent.

Your kid could have bullied my kid. Or one just like him.

*As a side note, I found out, right before we moved, that the "boy with the red coat" was my neighbor. He came over to my neighbor's yard one day when we were all playing soccer. Morgan froze. He whispered to me, as I asked him what was wrong, "That's the boy with the red coat, Mommy." 

The father of that boy and I struck up a conversation. I mentioned to him how badly Morgan had been bullied (he was standing under our tree, trying to make himself small). I told the dad how unfortunate it was that I had repeatedly requested a conference with the other child's parents and how they had refused.  I also said that I would love to have a word, outside of school, with that child's parents and explain to them that Morgan's autistic and how those repeated instances of being beaten up had traumatized him. How I wished that the other parents could see that my son wouldn't hurt a fly. How he's a great kid and never deserved this. How, as his mom, I wanted to press assault charges, but understood that the "yellow haired boy with the red coat" likely just came from a bad home and "isn't it a shame when parents don't take responsibility for the way their child acts?" That father grabbed his kid right then and there and said, "boy, we need to talk." I never saw him again. But I think he grasped the concept.

Fearing the Future

*Editor's note: Please allow me the opportunity to have some word vomit due to anxiety.

Morgan will be nine this weekend. I'm kind of shocked by that.

Most of me is surprised that this much time has flown by so quickly and there is a big part of me who is scared that the rest of the time will do the same. I'm not ready for him to grow up and yet, I don't want to keep him a child. I want to push him to grow, learn, accomplish, and "be."

My brain is swirling - joyfully with what the future will hold and terrified of what it won't.

Every time I think of an experience that I think he should have and has not and might never, I check myself because I know that projecting this way is wrong.  It carries the potential to harm us both. But I still do it at times because I'm apparently a glutton for punishing myself and my son in my own brain in my most anxious hours.

My son's future was never mine to force onto him or autism's to steal. It is not predetermined by anything but Fate. You can help Fate along, but you cannot force it. Believing that has been my road to autism acceptance and me fully embracing my son as an autistic person to be understood, not someone to be fixed.

I feel as if the future is full of the things which we, as parents of children with special needs, aren't allowed to broach in our thoughts. Because once we do, it's as if we've tossed gasoline onto a pyre of fear and anxiety.

He's halfway to being a legal adult, being of voting age, and being old enough to sign up to fight for his country- though he would likely be disqualified due to his autism diagnosis. That's where my mind takes me when I think of 18 and beyond.

Will he be ready?

 Will I have him ready?

I think of things I did at certain ages and wonder if Morgan will do them, too.

Will he date? Have a job? Will he go to prom? College? Live on his own? Get married?

No... I can't think that far ahead. I just cannot. I try not to think too far ahead into the future because that's too shaky of ground, too unstable of an area, and I am too type-A to look forward to something of which I don't know the outcome. I am confident in my son's abilities overall, but lack confidence in that I know what regression can take away. What he can do today, he might not do two weeks from now.

So, I concentrate on the here and now. Morgan is a wonderful boy who has worked his tail off in the last nine years to be where he is now. Who is loving, empathetic, and someone worth knowing. Who is everything I would want in a son.

I lie. I don't always concentrate on the here and now. The future scares the hell out of me.

Is the world going to be ready for him? Is he going to be ready for the world? Am I teaching him the life skills that he will need in order to be a man in society who can "function?" What the hell is functioning anyway- is this something I'm doing? Highly doubtful.

The next nine years will be crammed full of things. Wonderful and horrible. Highs and lows. More positive than negative if the past nine years are any indication.

Morgan will continue to defy any expectations I'm foolish enough to foist onto him, I hope. The future is a scary place, but we will continue to make safe havens for Morgan because we love him that much. The world doesn't come with a safety net. But we, as parents, can hopefully continue to provide one for our son- our love and support.

It Sounds Sort of like "Horse": Teaching My Sons Morals

I'm always looking for ways to teach my sons about morals, which would be a gray area for me in some places. Morality, it would seem, falls into the "do as I say, but never as I do or have done. Please. for. the. love. of. God."

Some things are easier to explain than others, but when I throw my own experiences into these lessons in morality... I fail.

Miserably.

Such was the case last night when it was brought up that I had once been to the principal's office (My high school friends of mine reading this need to shut their mouths, I was an angel, got that?). I have Thomas (Deciphering Dad, not the engine, just as annoying) to thank for this mess. I don't even remember how it came up...

"Mommy's been to the principal's office, right Mommy?" Thomas said, shooting me a smirk.

"You went to the principal's office, Mom?" Bay asked. He looked shocked. Obviously, he hasn't been taught our my colorful personal and family history yet.

"Well, yeah. And it was for something really bad. I made fun of a girl who was my friend. I called her a name. It was really bad," I said this all smugly, thinking I could teach my sons something. It hadn't really dawned on me yet that I was going to explain clique behavior with prepubescent females.

"What did you call her?"
"Why would you be mean to your friend?"
"You've always said to never do that!"
"THAT'S RUDE!"

The questions they peppered me with came quickly, faster than I could answer. But I wanted to tell the truthish (it's a word), and for them to understand that what I had done was wrong. I wanted to teach them right from wrong.

Oh God, I'm pretty sure I messed this up.

"Well, I called her a nasty word that sort of sounded like horse, but it's not horse and I misspelled it. In a note. The teacher caught it."

"What was the word? Is it one you still say?"

"Um, no! Never." This was a lie. I call Roxy, our dog, a word that sort of sounds like horse regularly when she craps on the pavement, gets onto the couch, or pees on the floor. I just try not to say it in front of the boys. "I also called her a troll, like those weird troll dolls we found at Babe's?"

The boys looked horrified that I could be so mean to a girl. Thomas started laughing. I wanted to kick him.

"Why would you make fun of your friend? And call her a troll? Those things are ugly!" Bay looked horrified.

"Well, um... I dunno. She wasn't that pretty and Mommy had a much larger vocabulary than other fourth graders and liked to say things that other people wouldn't understand. See, I came from a broken home..." That last part might have been in my head.

"Mommy," Bay said, his brother nodding knowingly while they both judged my former nine year old self, "all girls are pretty! You should know better."  Bay and Morgan were incited to take up the cause for women everywhere, whatever that means.

Hell. The kid was totally right. He was parroting back the past almost decade of my feminist, "every woman is gorgeous in her own way," stuff I've crammed down their throats and fully believe in. We don't do ugly shaming in this house, fat shaming, etc. When I say "we," I mean that I forbid it in front of the kids and am guilty of being catty as hell (I try to stick to laughing at what people wear) and also make negative comments about myself in the mirror.

However, since they, you know, listen to me with ears and all, I really try to fight the urge to poke fun at people in any place but my head. My brain is a seriously sick, twisted, and dark place, people.

"Yes, boys, it was really mean of me, wasn't it?" I was seriously thinking I could turn  this around still. "And Mommy got into trouble for it. It's not nice to call people names."

Morgan's anti bullying video script kicked into the "on" position right about then, "You don't say, 'Ya fatty!' 'Ya stupid moron!' You don't ever call people mean names like 'troll' or that word that kind of sounds like 'horse,' Mommy. Be everyone's friend. Be good. Don't be that bully kid."

I tried to explain to them why a girl would say a horrible thing to another girl. There really was no decent explanation except that I'd been very mean. So, I tried that approach. They still didn't get why I would just do that. I finally broke down.

"I did it because I was with a group of catty and bitchy little girls and they hated her, so I had to hate her, too. It's like code of the female. Don't worry, guys really don't pull this crap."  Yup, I ruined that whole deal.

The kids looked at me in horror. Thomas hid back in the kitchen, laughing silently. Because. The dog wouldn't look at me.

Moral of this story: 

I really suck at teaching some kinds of morals. 

And maybe telling stories about them. 

Please don't send me extra kids, okay? 

*Also, if you're that girl who I called the word that I spelled incorrectly and said sounded like "horse," I'm incredibly sorry. You were obviously not that word (Bay also thought I should write an apology letter to you and your mom). You did not look like a troll. I was just better at making up insults than the other girls due to my extensive vocabulary.... and broken home.