Our Autism #thisisautism

This is our autism.

Our family who loves our autistic child deeply. Who, if given the chance, would change the world before changing him.

A nine year old boy, big for his age, happy as a lark, laying in the middle of his self created Island of Sodor, happily scripting stories from the Thomas the Tank Engine series. His little brother looks on, frustrated that his big brother is taking up floor space, but I gently remind him that it's Morgan's turn to to play on the floor, so play along, or play with his Legos.

Our family taking trips into "the big city" to walk the streets in the French Quarter, someones hand tightly gripping Morgan's, anothers hand on Bay's, while all of us dance to the strains of jazz playing somewhere. Autism doesn't hold us back. Morgan loves our city and has taught us to find the details we might have missed otherwise. We notice and celebrate the beauty in the ordinary, whether it's cracks in hundreds of years old sidewalks or drain spouts shaped like fish mouths.

A boy who has brought more joy than pain to our lives. Who once was hard to understand, but once we learned his language, welcomed us into his world off scripts... all we had to do was learn them. Who loves with his mind, body, and soul. Who has the greatest belly laugh ever. Who tells all women that they are "beautiful, like a rose." Who will be your friend.

Our autism looks like a family with a child who hums, chugs, sings, bounces, and flaps. Who sometimes needs fidgets or earplugs, or even sensory breaks. He also sometimes announces whatever is on his mind right this instant. Sometimes we get funny looks or even questions, and I am glad to explain because autism is nothing to be ashamed of, but to be educated about. When we get the harsh criticisms or stares, I politely give people the finger- that's our autism.

Our ideas of autism, acceptance, and our coping mechanisms have grown with Morgan and the amount of community we have discovered.

I used to think that autism was a "bad" thing, because that was what I was taught. I now know that you can be autistic and have a full life.

You can be autistic and be married.

You can be autistic and have kids.

You can be autistic and be happy. 

I learned that last one from Morgan, my son.

He is our autism.

If It Makes Him Happy

I know I've written and joked a lot about wanted to burn all the things Thomas the Tank Engine related. Some days, I really do feel that way. But I don't stop my son, Morgan, from having what he loves or playing with those trains because they make him happy.

Last year, I wrote about how, one year, there were no Thomas' under the tree. Morgan freaked when he finally realized that what he'd asked for (a litany of engines) weren't going to pop up. Mom foul on my part. I was selfish and wanted a Thomas-free Christmas. I was thinking about my comfort level, not his. I was following the "Age+" and allowing it to bother me.

I wasn't thinking about how much Morgan lights up whenever he plays with his trains. Or how he can calm down when he's scripting a story.

This year, I'm being firm with people, I'm letting them know that it's Thomas or nothing- unless the boy states otherwise. Not much else interests my kid. A few people aren't very understanding, but I could care less. This holiday isn't about them- it's about the kids, and one of the kids is my son. What makes him happy is Thomas.

Besides, why waste money on something which Morgan won't play with?

That's what I always go back to. You know, if you're uncomfortable with this, send a gift card. What this autistic person in your life loves is Thomas the Tank Engine. It makes him happy, very happy. And if something brings that much joy to one kid, it can't be bad, no matter what the "age +" says on the box.

Yes, my home is beginning to resemble the Island of Sodor, but Morgan's happy. Isn't that the goal of raising a kid? Allowing them to be happy?

If you're reading this as someone who loves an autistic child, remember that, in our world, age appropriate is something mandated by parenting books or toy manufacturers who don't understand our kids. Brush that concept aside. We're only concerned about our kids being happy. They deserve that, especially during the holidays. All kids deserve happiness during the holidays.

Autism Speaks isn't Speaking for Us

Suzanne Wright, the co-founder of Autism Speaks, released a letter yesterday as a "call to action" for the nation. For the government to set both educational and insurance standards for autism. I actually take very little issue with this.

What I do take issue with, however, are the allegations Mrs. Wright made in her letter as to how autistic families live, eat, and breathe. That wasn't my autism, all the time.

This is Morgan, my nine year old autistic son. He is in an inclusion class in the third grade and, thanks to determination on his and several other people's parts, is doing very well. He stims, he scripts, but he is happy. He struggles, he doesn't understand quite a bit of things, and, yes, we deal with SIBs, but overall- he is happy. 

He is also toilet trained, able to dress himself independently, and knows how to make toast.

This is our autism. 

"Those families are not living."

My family lives- fully, thank you very much. We choose to go on trips, adventures, teach our children, and live life as fully as possible. Don't slap a functioning label on Morgan because we aren't able to do this. His label has changed since autism first became apparent. And functioning labels are, frankly, irrelevant to how a family might be able to live.

You choose how you see your life. Attitude is everything. So is your support network and and I understand those might be hard to come by, that's why social media has become so important to so many.

"These families are existing."

Aren't all families? Lady, we are living in a godawful economy. In this family, we are worried about medical bills which aren't even my son's. We are stretched thin. But we make it work because we have each other.

Morgan is my autism. Our autism. He has changed so much since his diagnosis. He has changed so much since that word was first uttered at the age of three to us, when he was nonverbal.

Our autism is a gentle giant of nine year kid who is finally playing wall ball at school. Who is now one of the most popular kids in the third grade because he's that sweet at school. Yes, we have aggression issues at home. However, I can't focus on those because that will tear me apart and it's not representative of my son's being.

I try very hard on this blog to be respectful of my son and family. I try to be respectful to autistics in general. What was in that "call to action" was not respectful in any shape, form, or fashion.

Yes, things need to change. Yes, there needs to be a call to action. I fully agree with that.

 First things first- Autism Speaks needs to learn that Autistics can speak- loudly, even if they must use devices. My son is one of them. And Autistics hear. My son is one of those, too. Perhaps that isn't the autism that Autism Speaks wants people to believe in, but this is the autism I will continue to write about. This is my autism.

Autism isn't a death sentence. Get that through your heads, Autism Speaks. You aren't speaking for anyone except for those who want to buy into fear mongering.

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.

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.