Dear You

*Trigger warning for talk of sexual abuse

Dear all of You,

I hate You. I don't hate easily, but I hate You.

I hate You for being the monsters that stole my innocence at the age of two, and again at three, then four, then five, and so on until I just expected to be threatened and abused by men at any age.

I hate You for implanting the most godawful things into my memories, things I cannot get rid of, things that wake me in the middle of the night, drenched in sweat, and screaming "STOP!" to someone who isn't there.

I hate the pain that stabs my heart when I think of the adults who were hurting me when they should have been protecting me as I grew up.

Maybe my autism was the reason I literally believed time and again that You would kill me if I told. Did you sense that? My naivete? Is that why some of You laughed?

You played so many roles in my life.

You were my babysitter, my best friend's dad, my family members, and nearly a stranger. You wore so many masks to cover your personality. You forced me to wear to wear mine, too.

I grew so used to those masks, I still wear them today out of habit.

Did it come naturally to You, I wonder? The ability to destroy someone's psyche at a very young age? Did you learn this somewhere? I assume it was pure Id that made you act upon your impulses, because no decent human being would molest or rape a child. But You did. You gave no thought to the outcome.

People made excuses for one of You, they called you "ill." People knew your dark truths and covered up years of secrets. I was your secret keeper until I wasn't. Then I opened Pandora's box and was called a liar by some.

I wish the things in my head were all made up, but they aren't. I would have a happier mind if flashbacks didn't occur.

One of your sons reached out to me for contact. You probably don't know that. I see he has little girls. He calls you his hero, the best guy he's ever known. I melted down and panicked when I read that. Are You ever going to tell him that his girls aren't safe around you?

I know one of You has granddaughters. I hope their mother is less trusting of you than my own was, even though she was leaving her children in the care of their father.

There are chips in my armor and sometimes I must put forth a facade of strength that I do not have. But I survived. I don't know why any of You picked me. I'll never know why.

I've stopped asking myself that question and accepted that you're less than human. I have so much in my life You don't and You can never take that away.


I have love.

I have stability.

I have a voice.

I have dignity.

I survived all of You.

The State of You

Hey you. Yes, you.

The person who doesn't know where to put that line between yourself and the in-laws or parents. Or the extended family, maybe old friends. The you who is so damned busy discovering yourself that you are baffling and probably irritating the crap out of all of these people that they feel compelled to say something awful (they're jack wagons, fyi)

The you who is in my groups, writing me messages, posting to forums, wondering how in the hell you're going to make it without turning into an axe murderer of assholes everywhere.

You? You. Are. Fanfreakintastic.

You just need something...

You need a contract saying that the state of you isn't up for debate, sale, or negotiation. Just no. You're finding your comfy spot in the world, just as everyone else is supposed to be able to do, no matter the neurology, and people must back the hell off. 

There is no "good time" to confront you about your parenting skills if you are a parent doing the best you can. Are they parenting your child? No. Paying your bills? Living your life? Listening to your thoughts on loop? No. So they, the all-encompassing "they," don't matter.

Put that in the contract.

Stay away from the online jack wagons who want to tear into you, whether they are family or flat out foe. You don't need that, unless you want your blood pressure to skyrocket and you like throwing random crap at your wall (I might do this). Anytime you see that crap, hide it. Delete them. Unfollow. Problem solved.

This is part of the poison which seeps into your life and defecates on your thoughts, makes you question your life skills thus far, and stirs envy at times. It also calls into question your parenting, your diagnosis if you have one, and so much else. Squash it like the vermin it is.

Put it in your contract for you that you won't allow this crap to eat away at your happy moments. Call bullshit when you see it or read it, at least in your head, and move on. This just drains you.

The stares? The whispers? The people in public who would rather treat you and/or your child as a sideshow? Also don't matter. They take up precious space in your peripheral vision, in your thoughts as you recall a moment, and in ten minutes, two years, however long- they won't matter.

The contract shall state that the peripheral assholes don't matter. Period.

The naysayers to your diagnosis or your child's diagnosis also don't matter. They don't live your life. They don't live in your brain as you loop your thoughts around the same thing over and over like a horse on a carousel. Or search endlessly for the correct "weight" of a shirt. They aren't there as your child perservates on something that happened two years ago. Or as you do. So, they can also go away.

In you contract for you, boundaries must be clear. Boundaries that read: "Hi, I'm/we're/my child is autistic. Respect me/us/him/him." That's all. That's all you should have to say. Stick to that and you'd be surprised by how many people might back up.


Above all, make your contract read: "I am me. I am glad to be me. I am proud of myself or working towards that. I will not allow anyone to control my or my family's happiness. I am a good human being." And mean it.


What does the contract for the state of you say?

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. 

Conversing With An Autistic

Hi there! In the very short time I've been diagnosed autistic, I've come across some very confusing or downright asinine ways people address me and some other autistics while in conversations, both online and in person.

I thought I would be nice and put together a cheat sheet for people to refer to when they are in contact with an autistic. Now, mind you, this is based upon my experiences as both an autist and a mother of an autistic, and in no way does it reflect the attitude of the autistic community as a whole.

Step 1. Say, "Hello, my name is ----." Wait for a response.

Step 2. Talk to us like you would a person. Because we're people. Who knew?!

Step 3. Never say, "But you can't be autistic! You're so pretty/married/verbal/smart/independent." This is a tip off to the autistic that you may just be someone to kick. Not that we kick, but we might want to kick. By we, I mean "me."

Step 4.  No small talk. Get to the crux of what you're discussing or wanting to discuss. If it's the weather, it'd better be pouring.

Well...

Step 5.  Want to discuss autism? Great!
Now, this is a biggie. If you are in a discussion about autism, person first language, or functioning labels, put on your listening ears. You're actually talking about autism with an autistic. There is this thing called being polite, which involves digesting what the other person is saying. Don't assume to know better.

Don't tell me what to call myself. Don't assume to know my functioning level or that of my child. To do so is to make yourself look like a jerk.

My least favorite thing to hear is, "Don't let autism define you! It's only part of you!" Yes well, that might be so... but my skin color, natural hair color, and being a female are only part of me, too, and I can't get rid of any of those things. All of those things in some way define me.

Last thing on this: if you ask an autistic for what autism feels like, allow them to answer. Don't then negate that. It makes sense to ask an autistic what autism feels like. Would you ask a non parent for parenting advice?

Step 6. If we're in person, don't hug/squeeze/or otherwise touch us unless you know it's okay. Some of us really don't like to be touched.

Step 7. "Well, if you're autistic, what's your autism talent?" Just... no. Ask what we're interested in. Something like 2% of autistics are savants. I'm not one of them unless you count my amazing ability to swear.

Step 8. If you say, "Let's do this again" please mean it. I'm going to take you very literally.

If you've read through this and you're wondering what can you say to an autistic, or me, well... I think it's safe to say a good majority of us appreciate debate. I know I do. However, we hate having our neurology used against us. People do that quite a bit and it feels like a knife in my stomach- I can't speak for others.

You can talk to me about:
- our families
- autism
- politics
- flowers
- world news
- books
- music
- special education
- healthcare
- work
- and plenty of other things.

The "Look" of Autism

"He doesn't look autistic."
"She looks so pretty, are you sure?!"
"But he's cute."
"Did you get a second opinion? Because he looks so normal."


A picture is worth a thousand words, or so some say.

Beautiful children. 

Can you see how hard someone has worked to be able to say "hi" or say their name? Or write a name? Or conquer anxiety? Can you tell who has difficulty with language or who scripts all day long? Which ones are toe walkers, jumpers, bolters, wanderers? Which people have participated in ABA, OT, ST, hippotherapy, or water therapy?

By looking at pictures, are you able to pick out which kids are in inclusion classes, self contained, or a combination?

You can't tell. You cannot tell by just glancing at a picture of someone that they are on the autism spectrum, or where on the spectrum they are, can you?

There is no single "look" to autism.

Autism is different walks of life, different religions, different races, different ethnicities, and different genders.

Autism might be verbal, non verbal, tall, short, curly or straight haired. Someone who is autistic may or may not flap their hands, need chewies, fidgets, or a gait belt.  Autism might need 1:1 support in school or moderate support. You can't tell by looking.

By glancing at the kids, can you tell who have parents who are politically active, volunteer endlessly at the school, protest at the capitol in favor of better care for the disabled, advocate across our communities for students with IEPs, who's more comfortable behind a computer, or run organizations dedicated to the betterment of families with disabilities? None of us are wallflowers when it comes to fighting for our kids' rights, we all just do it differently. Autism, for the children featured here, looks like very dedicated parents. I am one of them.

With autism acceptance and awareness month upon us, please keep in mind that appearances are deceiving. Never judge a book by the cover. Never think that you know someone's mind or situation because you've been around them for five seconds. Please, don't think it's okay to use a phrase like, "But he/she looks ----." No matter how you phrase it, "normal," "low functioning," "high functioning," it usually feels odd and from my experience, you can't just neurology from looking at someone. Tell us our kid looks cute. Or that our child is sweet. That's usually okay.

Oh, and if our child doesn't "look" autistic... maybe it's that new haircut the kid's sporting. We only bribed the lady with an extra $20 or so.



*Thank you to the parents who allowed me to use their child's image in this post. 

Why it's Personal

Last year, for Spread the Word to End the Word, I asked people to stop using the word "retarded." I explained my points as to why I wanted them to do so and I asked them to take a pledge to use respectful language around people like my son, and to stop using that awful word.

Well, I'm asking again. There will be a link at the bottom of this page for you to visit. You can easily click and take a pledge to stop using the word "retarded."

But this year, I'm wanting to explain further why I'm asking.

You see, that word is personal for me. I flinch when I hear it on Family Guy, the several times I've heard it on movies, the hundreds of times I heard it on American Horror Story season 2, and whenever I hear it come out of someone's mouth. I'm fond of saying, "If it's not about you, don't make it about you," but with this, I can't help it.

I don't  flinch any less when someone says, "that's so GAY" or "You're a fag" "What faggot."

I volunteer at a Title One school in Louisiana. We have the distinction of being one of the more ethnically diverse schools in our parish. And yet, I don't hear the kids yelling, "You nigger!" "I can't be your friend because you're a spic!" "Nope, we can't play 'cause you're a dothead/raghead." "I feel like such a beaner, today." If they do say this, it's usually because their parents have taught them, and that's wrong. But I rarely hear those words.

Now, if you want to tell me that you would never say those words I just typed up above because they're hateful to groups of people, consider that the word "retard" is very hateful to my group- people with special needs and those who love them. I can't speak for us all, but I'm speaking for my friends and me.

For some reason, it's not okay to be overtly racist and use that sort of terminology in society. People (even racists) don't do it unless they're in packs, I've noted. But saying retard? Sure! Everyone is welcome, right?

Wrong. And honey, this isn't about freedom of speech, this is about respecting other people. Period.

I'm the mother of a child who, despite him being able to make his own sandwiches and just now learning to tie his shoes at the age of nine, might always live with me. He still needs assistance with bathing, prompts to get ready because he forgets, and he's vulnerable because of how he trusts people.

His exceptionality on his IEP is listed as "autism," and scored  data indicates he is borderline intellectually disabled- or, as some have called him, retarded. More data shows that he might never catch up to his peers and be "on level."

He is also sweet, was recently picked as Mardi Gras King at his school by random selection, is well loved, and makes my heart swell with pride every time he grasps a concept or (without prompting) holds the door open for someone and says "ma'am." He does that last one quite a bit, he's charmed the daylights out of the teachers and staff at his school.

It's easy to put a face on the minority groups I mentioned before something racist or xenophobic flies out of your mouth, isn't it?  Maybe you have a gay brother, sister, or cousin like I do to hold you in check before you state anything homophobic. I actually have a conscious.

In case you need help putting a face to the word retard, however, here's my son.  

My Mardi Gras King and me. Isn't he handsome?

He's not a retard. Borderline intellectually disabled? Possibly. But we've moved along with the times, and I suggest others do the same. 

It's a bitch to be sitting on the wrong side of history.

Click here: www.r-word.com to take the pledge

Just a Touch of Club Au

Last week, the boys and I were in our local CVS, buying random crap we needed. I was herding them, like cats, as I do, to the checkout, when the cashier told me to take my little CVS card thingy to a kiosk a few feet away to get extra coupons. Morgan volunteered for the task. He loves bar code scanners and kiosks.

The cashier, being ever so helpful and chipper, gave Morgan about rapid five prompts at once. And yes, I told her his name.

"Son, sweetie pie? Just scan your mommy's card! Wait about a minute! No just wait, don't touch the screen! There will be coupons coming out! Go to the right side! See that slot? Now, wait for the coupons! Now, wait and grab the coupons from the side where the slot is, sugah!"

Amused, I helpfully told her, "He's autistic, he might not respond to all of those commands, and you didn't say his name. He'll figure this out, just watch."

Morgan figured it out, flapping happily with this new kiosk and coupons.

The cashier, however, dumbfounded me with her chipper, "Oh! My daughter is a little autistic- a touch Asperger's, so am I. Just a touch, though." The last part was whispered with very wide eyes. I about choked on my laughter.

"A touch, huh? Well, we're fully in the autism pool. We're kind of swimming in it," I replied, "Big A over here."

I thanked her for saving me $17 dollars, herded the kids out the door and have been pondering the exchange ever since.

How is one just a "touch" autistic?

Is it just their left side of the body that's impacted? Perhaps a toe? Maybe just their hair? Does the autism only happen when they put on shoes or take them off?

And what does that IEP look like? I'm dying to know! Do these people have "Since there is only a touch of autism, XXXX will only need a touch of ST, OT, and prompts a touch of the time"? Or is there another eligibility?

Come to think of it, I met a psychic in New Orleans named Rena who claimed she was a touch "of that spectrum thing." Perhaps this explains it. Now I'm just confused.

I've encountered people who deny their children are on the spectrum, despite the neat and long lines of objects all over the house, the strict diet of only three foods, meltdowns, strict schedules, and the fact that their child is still not speaking at age five or six. That's denial, possibly.

I've met people who have claimed that "everyone is just a 'touch' autistic" but have usually brushed them off as an "aw, bless your heart!" thing.

But a "touch," huh?

I get that this is an exclusive club and maybe they don't want to learn our secret hand flap followed up by the acronyms, so maybe having just a touch saves them the work of gaining full entry. They shouldn't be so scared! Hell, it only takes a year or five to get used to all of this. And that hand flap is a breeze learn. Also, we nail that "A-dar" pretty fast. This woman never registered on mine, so I call a false "touch" there.

Maybe this is me perservating on a topic...

Autism isn't the hokey pokey. You don't get to put your left arm in and take it out. Rather, your brain's all in and then you stim all about.