Tips for the new autism parent

Hi, you're new here.

I see you at the schools, in waiting rooms, and the grocery store. You're overwhelmed, aren't you? I'm sure that your head is swirling from the act of parenting a child you might not understand, the advice you're being given, and the materials you've been pouring over. You probably feel isolated, misunderstood as a parent, and even angry that your child is autistic.

There are certain truths I've found to be useful while parenting my autistic child. These are my truths, but perhaps they'll help you.

Don't love your child despite autism,  love him for himself. Acceptance means loving someone wholly.

Don't get wrapped up in the labels, no matter how many your child has. This is so hard, especially when your child is young and the world of autism is so unpredictable (it's never really predictable). Here are the labels you want to concentrate on: capable, loved, and worth it. 

Feel every feeling, but don't let those feelings take over your life.  All of those things you're feeling? Perfectly valid, even the one nudging you to cry as much as you breathe. Autism can be scary because of the uncertainties, but know that this isn't the end of the world, not even close. Don't be bitter for the life you think you're missing, be in the moment of the life you have. 

If you don't have a sense of humor, get one. There are funny moments in every day, even the days when you want to curl into the fetal position and rock yourself more than your child is flapping or scripting. 

Celebrate all of your child's milestones, especially the ones you never knew existed. The first time he plays with another child unprompted. The first time he willingly puts on winter clothes. The first time he eats a not brand specific English muffin. These are all accomplishments. Feel glad for them. More is coming.

Find your tribe. Your tribe of people is out there, even if they're on Facebook or Twitter. These are the people you can tell most things to, laugh with about poop, and who will get it.

Buckle up- it's advocating time. Learn your child's rights and take no prisoners when it comes to defending them. Educate yourself as much as possible, take a breather, and then jump back in.

Keep calm and tell the people who refuse to understand your child, "bye.". This might mean you don't talk to family members or formerly close friends. You know what? If they cared about your child, they wouldn't be jack wagons.

There is a reason for every behavior your child displays and sometimes, that reason is because they're a child. "Behavior is communication," is something you're going to hear over and over. However, sometimes that behavior is simply due to your child's age.

Allow them to be kids. We get one childhood, that's it.

No one is the all knowing being of autism. There is no autism prophet. Consider that when receiving advice, even this advice.

Take care of yourself. Good mental health is key for raising any child, but when raising a child with extra needs, it's critical. Reach out to people, ask for help if you can, and take help if it's offered. Your child needs you to be healthy.


Above all else, remember that this moment isn't forever. Your perspective on autism and parenting will be different in another year. Love and enjoy your child.

What It's Like

*Editor's note: The following was a conversation I was lucky to be privy to between my two sons, over the course of about twenty minutes. I've omitted several things for privacy, and cleaned up others, while trying to keep the language as close to the original conversation as possible. I received both sons' permissions before publishing this. 

"Morgan," Bay asked, "what's it like to be you?"

The question was asked as the boys finished dinner and I sat away from them, reading a book. I marked my place and quietly listened.

"Well," Morgan said, "it's confusing. You know I'm an autism kid. Noises are big. Clothes have to be soft. Smells are hard." He went back to eating, apparently satisfied with his answers.

"But, Morgan, what's it like? Why is it confusing to be you?"

Morgan took a deep breath, pondered this question some, and then said, haltingly, "People think I don't listen, but I do. Teacher always says, 'Pay attention, sweet boy!' but I am paying attention. It's hard. I pay attention to everything, all at the same time. I can't pay attention to just one thing... I can't always use my words."

"There are all of these sounds and thinks (thoughts) and I can't just pick one. Can you?"

I sat, stunned. Morgan's never talked to his father or I like this. He's never really been able or rather, we've never been able, to get him to talk to us like this.

"Morgan," his brother started, "why do you script? Why do you use Thomas so much and love him so much?"

"I just do. The stories are in my head, 'cause I'm a narrator. I love Thomas, he's my friend. He's a very useful, cheeky engine."

"But you know, other kids don't like him as much, right? I mean, aren't you worried about bullies? Why do you talk like that (meaning nasally quality/monotone and scripting)?"

"I don't care if they don't like him, Mama says he's mine to love. Mama and Daddy say bullies just don't get hugged enough. I told you- I talk like this 'cause Jesus made me this way. Now, stop being a bossy boiler or this conversation is over!" (note the script)

Me: "Morgan, is there anything that's really hard for you?"

"Yeah, people when they give me too many directions. That's hard." Having my own struggles with this, I agreed with him. "Going new places used to be bad, but sometimes it's fun now. But not too much. Rounding (numbers). Noise. Making people understand me."

"Haircuts used to be really hard, right?"

"Yep, but they're not so bad now. The hairs still feel like poking on my skin, and I'm scared my ears'll be chopped off." "Mama won't cut your ears off-" "But I feel the scissors coming in! My brain tells me my ears are in danger and I need to yell!"

Me: "What would you make people understand?"

"I need to chuff (when he makes train noises and moves his arms in a circular motion, bent at the elbows). Ya know, trees stim? I'm a good boy and really useful. Don't talk about me in front of me. Kids shouldn't make fun, the grown ups, either. It's mean. People should understand people." I started tearing up.

Bay: "What's easy for you? You're good at lots."

"Making breakfast (he makes English muffins with cream cheese every morning for himself). Thomas stories. Tying my shoes. Making train sets. Snuggling. Smiling. Laughing. Swimming. Remembering the way."

Bay: "What's your school like?"

"It's big like a cave. It full of noise and echoes. I don't like the gym. It's confusing and fussy. Everyone is very busy all of the time and, when you're not busy, they give you more work. It's all work, work, work. Mrs. C's room is great. That's where I go for sensory breaks. I have the bean bags, the stimmy toys, all of that. It's quiet in there, I can tell train stories. Have you heard of the (slips into a Scottish accent) twins, Donald and Douglas?"

Bay: "How come you don't have friends come over?"

"Because this is my home. I have school friends. They're at school."

"Don't you want to play with other kids at home? Other than me?"

"Sometimes. It's not important to me. I like you, Bay."

"Any other questions?"

"Do you like being autistic, Morgan?"

"Do you like being redheaded?"

"Um, I don't know how to not be redheaded."

"Well, Bailey, I'm an autism kid. I don't know how to not be one. I like being me, even the hard parts."


I like that Morgan covered the important stuff.

The boys, hanging out of a Tardis. 

Not Typical

When Morgan was first diagnosed with autism, my husband and I were in "fix it" mode. We meant that our end game was that Morgan would be indistinguishable from other children.

We wanted him to pass for typical. We wanted him to be happy at all costs, as long as those costs were within our scope of reasoning.

We were determined. 

I didn't care that the little voice in the back of my mind screamed this approach was wrong for us. Nope, it didn't matter. My son's voice and the atypical way he spoke? That needed to change. I completely neglected to remember that I should be thankful to be hearing words, finally. Those fidgeting and flapping fingers? Those needed to stop. All of the books said so. Typical kids don't do that.

Scores needed to climb higher. He needed to blend with the other children. He was miserable, so were we. The more I pushed for him to be less of an individual and part of a herd, the more behaviors we saw.

This didn't last long.

I (I say "I" because my husband traveled a lot in those days and I was the primary caretaker) wasted time and energy. I didn't see that this wonderful boy who had been in front of me the entire time was great, just the way he was. He needed support, not to be changed. The only changes that needed to be made were the parenting and teaching methods being applied to him. 

I don't remember when the epiphany occurred, but when it did, breathing became a bit easier. Morgan began to smile more. We, as a family, enjoyed life more. We understood each other better. There was no more suppression of autism, there was only expression of Morgan's truest self. Sometimes his truest self wasn't the happiest child or the nicest, but he's been himself and not some representation of what I wanted him to pass for. This begins with allowing him to stim and extends to indulging him in his love of Thomas the Tank Engine at the age of ten- we used to fight against those things. 

He is in what is considered middle school here and with it comes clubs, a dance or two, and some pressure to fit in. Morgan doesn't really feel that pressure, I think, but he misses having friends. A teacher, when I was chatting with her, offered up some suggestions that would, in a sense, eventually allow Morgan to "fit in and pass" as a typical child. I laughed. 

I told her that "being typical" isn't possible and therefore, isn't on our radar. I don't want my son to pass for something that he is not. Morgan is the most genuine person I know and I want him to stay that way for as long as possible. I don't believe that teaching him to mask his personality, his thinking, his mannerisms, or his truest self, is the best way to go about things. The teacher saw my points and agreed. 

I can't wash my son typical. I don't want to. I don't want to compare him to his typically developing peers and feel sad or long for something we've never had. I don't want to push him to be something that he's not. Instead, I would rather push him to be the best that he can be. 

The less I've pushed Morgan to "pass," the more I've allowed him to play with his autistic peers, typical peers who get him, and just "be," the happier he's been.

That's the end game for me, right now. Happy.

I understand why, out of ignorance, I wanted my son to assimilate and "become typical." I thought that, with enough hard work and diligence, he could figure out how to be typical and happy. My very literal brain was taught by society that my son would never be happy so long as he was autistic. That he could never be happy as an autistic. 

I'm so glad that I stopped listening to what I was told. Society is wrong. 

Being atypical is not easy.

Being autistic is not easy.

But you can be happy.

It just takes the right environment.

Why I Stopped Using the "F" Word

I've always been hypercritical of myself. Always. By saying this, I am admitting that I am a grade-A neurotic asshole about a lot of things. With severe endometriosis in the last year has come severe swelling and weight gain. Some days, I carry an additional twenty pounds and fluctuate by four dress sizes. I've been depressed about this. I don't feel pretty or slim or even curvy. I feel dumpy and ugly. I've been vocal about this to my husband and speak out loud to myself about this. Self-critiquing is a nasty habit for me. I just really didn't know how much my kids pick up on it.

Because of this, I've decided to be radical and never use the "F" word, ever again. I'm asking that you never use it in front of your children, either.

Back in April, I noticed Bay asking about calories. He wanted to know what they are, how they work, and how much he should have each day. Since his class had been studying the food pyramid, I answered his questions in basic terms, explaining that calories are energy.

But it didn't stop at the questions. Bay, my always finicky eater, has been trying to eliminate whole meals. Breakfast is a time of coaxing, bribing, and tears. I made it a habit to come and sit with him at school last year a couple of days a week when I could so I was sure he was eating lunch. Dinner has become a battleground.

Always energetic, he's been mentioning wanting to "exercise." He says he wants to go jogging, ride his bike, swim, but these were things I could, again, brush off as a child who has overheard something and just tell him, "You are plenty hyper as it is, honey. You are a walking, talking, exercise machine!"

I brushed off the comments he was making about his belly as him being silly. Hell, a six year old boy doesn't worry about his weight, right?

I knew he was worried about his brother's weight after Morgan had been picked on a few times for being heavy. However, I really only addressed Morgan's concerns, which were very few. Morgan deals in what he sees as the finite, for the most part, not the seemingly endless amounts of childhood criticisms which may come from being different in any way. Bay's concerns, to me, weren't as relevant. After all, he's typical(ish), he's outgoing after he warms up, what could go wrong?

I stayed on him about eating right and drinking enough water and milk this summer. I noted with concern the headaches and tummy aches he kept, but honestly thought it was him either being overheated or faking illness to get out of chores. But then the lethargy set in. And the under eye circles. And the dry skin.

Bay dumped out a bowl full of cereal one day this week. He didn't even try to eat his breakfast. I lost it and yelled at him, "Why won't you eat?!:" "I'm full, Mama." "Bull! You haven't eaten enough to fill up a gnat. Son, you have eat. How are you going to grow?" "But Mama, no one will like me if I'm fat."

I felt like someone had dumped ice water on me. My temper turned into raw anxiety.

He told his daddy and me he's scared of gaining weight. That, if he gains weight, kids might make fun of him and not like him. 

I had a long talk with Bay. We talked not just about eating healthy, but how we eat to live and live to eat. I told him, too, about eating disorders like anorexia and how much that can cost him. He didn't realize that starving himself can actually hurt him to the point of being deadly.

His pediatrician backed me up when we saw her. She told me, privately, that this is a problem she sees with little girls in our community, not boys. I nodded and said, "I was an idiot, though, to believe that I would be exempt from this problem." She showed Bay how he's, right now, at a healthy, though slight, weight for his height. She talked to him about how he's already making healthy food choices, but needs to make more choices to "fill up his tank." She also referred me to a child psychologist and we agreed to monitor this very closely.

My son isn't anorexic, but he is showing clear and early signs of having anorexia nervosa. This, my friends, is a big frickin' deal. His doctor and I spoke about the possible genetic links to it, from me, a former anorexic/bulimic, and my mom, a former anorexic. We also spoke about what Thomas and I can do as his parents to make eating fun and to make Bay more comfortable with food.

If you ever think you have boys, you're immune to the eating disorder world, think again. They listen every time you say, "Ugh, I feel so FAT," or "Jesus, my ass looks huge." They will take in every single derogatory comment you make about your body and apply it to themselves. This is not just a "girl" problem. This is a human problem. We're so busy fighting obesity (which is valid) that we don't think about teaching our kids to really love, and take of, the bodies that they have. We have to do that, too.

I don't want another mama to feel this type of pain for her kid.

I thought I was teaching my sons this kind of self-love and body acceptance that I constantly promote on social media, but I wasn't. I wasn't listening to my own kid.

 I didn't pay attention when Morgan was teased for being chubby. I didn't know how it made his brother feel because I didn't ask. Somehow, while I was busy bemoaning what age and illness were doing to my body, I'd not seen the disordered thinking taking root in my child's head. Maybe I was worried because he wasn't eating enough, but anorexia? In a six year old? No.

I was wrong.

Kids have an amazing ability to fact check you as you're lecturing them in a hypocritical fashion for not doing the right thing. So, the next time you're in front of that mirror, tell yourself, "This isn't bad. I look good." Eliminate the "F" word from your vocabulary when you're around your child, at least. That other one? Well, it's personal choice.

I'm making a vow, right now, to love my body. This body might be a massive pain in the ass for me, but it's carried two kids to term, provides hugs, and my sons think that the person it belongs to is beautiful.

I'll never use the "F" word again.

Going Without Air

I wake up in a dead panic, not knowing where I am. 

What's wrong with me?

I can't breathe. Oh God. I can't breathe. 

Panic is reaching into my sternum and through me. It has a steel fist grip on my spine and it's twisting, trying to keep me from moving or breathing. 

I can't breathe. 

Why is it so hot? 

I'm flapping at my neck, clawing at my hair, trying to get it off of me. The heat feels like it's crawling across me in stinging singes. I feel like I have ants stinging me and roaring wind in my ears. 

Panic has reached into my head and stirred it so badly that I cannot control my thoughts. They're galloping everywhere in a frenzy. 

I start to pace. My convoluted brain keeps screaming, "BREATHE!" I flap. I flap and pace. I angrily flap. I gasp for air. My chest feels as if it will explode. 

An hour goes by.

My husband hears my sounds and wakes up. He asks me what happened. I gasp, "Panic." He nods and rubs my back, which causes me to freeze more. I hate being touched sometimes. I cry some more. 

I try to stretch back out on the bed on and the tightness in my sternum jerks me back up. I yelp. I gasp for more air. 

The panic has set in so badly at this point, my brain is scrambling to make sense of anything. My hands are like foreign objects wildly combing my hair back and then flapping angrily as I pace and gasp and try to think. 

I feel crazy, so damn crazy. Other people don't wake up like this, surely. People sleep, correct? 

I'm going to throw up. 

I hate this. 

I'm shaking so badly and crying so hard. I brush my teeth and recoil at the smell of toothpaste. I hate it- too strong. I wash my face. 

I notice I'm finally breathing. 

I take a deep breath.

I have air. 

Birds are A-Holes

*Warning for absolutely horrible language. The following account is completely true and maybe only slightly embellished due to hysteria. 

Nola, my pain in the ass cat.

Nola, my cat, escaped (again) last night when I forgot to latch the front door after letting Roxy out. It was raining and I didn't hear the door not close. Also, I was on the phone with my friend from Autism Art Project, so I was distracted. I hung up with her and was trying to get Morgan into bed... He kept getting up and wandering around.

That's when shit got real and my actions stopped making sense.

I heard Morgan yell, "CAT! Cat's out!" and he was freaking out, so I ran outside into the mothereffing storm. No jacket, no flashlight, and zero common sense.

Nola viewing her domain.

Ugh. I was yelling for this cat, shaking bushes and trees. She ran out to me and then back into a bush, just to be a jerk, so I followed her, trying to grab her. Did you know cats are really freakin' slick when they're wet? And dark cats are really hard to see in the dark without a flashlight?

I lost sight of her until I just barely heard a peeping sound over the booming thunder and howling wind. I saw the big bush next to my downstairs (directly underneath me) neighbor's patio moving wildly. Nola had climbed up into the damned thing. 

Apparently, she'd seen where the mockingbirds (whatever kind, they're asshole birds) had built a nest and stuck two of their babies. She snagged a baby before I could grab her scruff and ran into the hedges, which are mean ass holly bushes. Also, I'm convinced snakes are in there.

I then made it my goal to chase her away from the baby bird. In the rain. And thunder. And lightning. So, basically, I would chase Nola some and then stop and scream as lightning would streak across the sky, then run. I went across the damned parking lot and toward the "swamp," got soaking wet, busted my ass, and had nasty mud between my toes. I was visualizing snakes, rats, and God only knows what else in the dark.

I came back inside the apartment and Thomas gave me the third degree about our delinquent cat, why I didn't have her, and why I wasn't interested in nabbing her. I mean, the little shit tried to KILL a baby bird! How dare she? I was seriously indignant. He wasn't seeing things my way, so he went to look for her, but no dice. All I could think about was that poor baby bird, which doesn't make sense. I loathe birds. I have a serious phobia of birds. I will panic if a bird comes near me. And, hell, I could have been hit by lightning! Or bitten by a snake!

The storm eventually got worse and Nola came inside because I'm a tenderhearted asshole and stood outside getting wet while calling her.

This morning, I could hear the momma bird squawking her terrifying ass off, looking for her baby. Really, she was negligent for not watching her kids, right? Who leaves their children overnight? I came outside and looked over the balcony. It was a miracle! I saw the baby bird, still breathing, on the ground! It was in the mean ass holly bushes!

So, I faced my phobia, because I'm a good person, dammit, grabbed a clean washcloth, and went downstairs. Immediately,that momma bird started on the attack, trying to peck my eyes out. "Just effing stop!" I yelled. But she didn't. I was terrified.

I picked up that baby bird ever so gently and that's when the momma bird went ten shades of psycho. She was swooping and screaming, cawing like nothing I've ever heard in my entire life right next to my ear. I had to persist in my task of picking up her baby, though. It was like I was on a mission from God. Or something.

I had to drop the baby in the nest like it was a lump of hot coal because, dammit, my life was at stake. I could have died. That damn bird wasn't grateful to have her kid back! She was still dive bombing me and trying to peck my very brains out!

Unfit mother bird. 

She's been yelling at my door all damned day and tried to take my head off when I took Morgan to school. I mean, she got her kid back! I wasn't even the nest wrecker! She ought to be glad I don't call Avian CPS on her!

What a bitch of a bird. Gah. No wonder I have phobias.

Unless it's a box turtle, I'm never rescuing another animal ever again. Ever.

*My friend tried to convince me that the bird is my spirit animal and this fight with the momma bird is symbolic of me protecting my kids or some such crap. You know what? My spirit animal is a cheetah. Cheetahs eat birds and wake in the morning to piss excellence. 

An Uncommon Father's Day Tribute

Dear Dad,

Thanks for screwing up in a phenomenal way.

Your screw ups, and their lasting effects on me, have done me a world of favors. Truly. I used to loathe you for it, but now I only feel some mild apathy and pity because you've missed out on the nine best things to ever happen to your world- your children and grandchildren.

By your actions, you taught me that a promise is never real until it's proven.

You taught me that I could always pass the buck to someone else if I wanted nothing to do with the task at hand. However, what you neglected to say out loud is that you cannot gripe about the results because you've given up all responsibility.

You were the life professor who taught me to never settle for less than I would be willing to give. To never hang all of my hopes and dreams on a person who doesn't love himself enough to love me in return. To never show all of my cards because someone will take advantage of that, like you.

I learned that addictive personalities are genetic, but being an ignorant  jackass isn't.

You taught me what to look for in a father for my children. Someone who would care. Be there. Someone who would remember their child's birthday.. or a graduation.. or the birth of a grandchild or a wedding. Someone who would want to be there. Someone who understood that my parents being at an event for our children was a privilege, not a right. You lost the memo for the last one.

You taught me that I didn't want to marry someone like you in my formative years. Someone who would not be violent, someone I could trust, and someone with a real backbone, who wouldn't allow his childhood to rule his head for his entire adulthood. Without ever actually directing me that way, you sold me on the idea of gravitating toward a survivor like me who would understand that life's not always a pretty picture for everyone. We, at the time, were the best things to happen to each other. So, thank you.

As a frequent consumer of cheap booze and spewer of denial, you instilled in me the belief that I must take responsibility for my actions- while intoxicated or sober.  A whole world built upon lies must make your head a very frightening place. It's a place that no therapist, medication, or daughter can explore because you've closed off the in roads. That world must be lonely, but we on the outside will never know. I speak and live my truth to the best of my abilities. I poke fun at it, but I try to never deny it.

In the less than dozen times I saw you growing up, you taught me that I wanted more for myself. That I would never be comfortable with someone else raising my children, as you were, while I was raising someone else's, as you did.

I know that just because you're so terrified of being responsible for what you've created, doesn't mean that I'm the same way. I'm not like you.

I learned from you that I have strong roots in things which aren't great, but I am the person who chooses to cut those roots. I choose my future and what I will allow to affect me from my past.

You didn't do that. You chose the roots embedded in darkness and I chose to allow light in my life. I had to cut the roots that led to you and I am grateful every day that I did.

By both actions and inactions, you've taught me so much.

Thank you, Dad. Happy Father's Day.

Sincerely,

Jessi
*This is the proper way to spell my name, in case you're reading this and wondering.

Today

Today I was grateful.

We were by ourselves and no explanations, no funny looks, no "why does he make that sound?" happened.

We were alone at the pool and it was wonderful.

My boys played like only they can play, with their own language and movement.

They raced. They dove. They sang. They smiled.

They were children.

They didn't cry. They didn't notice the stares I notice. They didn't feel the scrutiny I feel and shrug off.

I didn't fight the urge to scream from the noises, to shove children away from my children for calling names or touching them, or sit on the pool steps coiled like a spring, ready to take action. Or look on with bated breath, afraid that my autistic son, in his efforts to make a friend in his community, will innocently do what is consider the wrong thing by his typical and rather boorish peers. Even though he's just doing what his clique at school taught him was okay.

I was able to breathe.

I enjoyed myself.

I smiled.

I sang with my kids and swam.

I didn't fear.

I didn't steam.

I didn't tell a parent to control their child, too.

I know I shouldn't let other people matter, but sometimes they do. Sometimes, I need to be by myself with my kids. I don't want the world to interfere because sometimes, the world's inhabitants can be awful.

Today, we were lucky.

Today was a great day.

My Life on Lupron

*If you're just joining me, or have come aboard in the last couple of months, I have severe endometriosis. I've already had a radical hysterectomy at the age of 27. Since last fall, I have been in a lot of pain because of a reemergence of my endometriosis that we've found to be inoperable because of the locations of the endometrials. Now, I'm on a six month course of Lupron - a drug that shuts off all estrogen production/targets estrogen cells - to kill these little clusters of hell. 



Lupron is the effing devil.

I'm going into week three or four of Lupron and this shit is making me insane. Certifiably. I think?

Apparently, it feels weirder if you've had a hysterectomy. You get to actually feel it attacking the endometrials. I think it's like the "pew-pew" battles seen in Star Wars. Imagine tiny ships shooting little lasers into the endos, okay? They just load that little estrogen cell filled thing up with medicine, it gets full to bursting, then BOOM! They knock the hell out of that thing, draining all of the estrogen out and save the day!

The pew-pew fight moves on to another endo and the battle resumes. Some of the endos fight back, and that's when the swelling occurs. Can you tell I've had time to think about this?

Lupron puts you in menopause, which I'd already be in, but I went off of my meds for that keep me out of it.

Menopause and I don't mix, okay?

I'm having hot flashes that make me wish the Polar Vortex was still hanging out. Meanwhile, everything outside is swampy feeling. I get that I live near a damn swamp, but does the air have to feel so freakin' offensive? It's not just hot, it's like I step into a wet towel fresh out of the sauna from hell.

My apartment's thermostat is set to 75 degrees to keep the other inhabitants comfortable. However, all ceiling fans are going full blast at all times. I'm guilty of sticking my head in the freezer, sticking the ice pack thingies under my knees or arms to cool down, and yelling to an empty apartment, "Just stop moving! I have to cool off!"

I want to move to Antarctica.

I'm saying stuff out loud without meaning to. You know, more than usual. That self editing thing I'm really bad at? Oh God, it's just gone, if it was ever there. I've asked the kids to breathe quietly, to stop smiling so loudly, and then apologized. I've told the dog she's too fat, the cat that she's an embarrassment to felines, and then cried. I've told my husband he can't touch me, then cried when he didn't hug me. I've cried over insurance commercials.

To add insult to injury, my stupid hair is falling out and coming in gray. I'm pretty sure this crap is getting chopped off. Not that this is an irrational decision (ahem, people who have said that).

You see, I'm a hot flashin' mess. Not literally a hot "flashing" mess, but a hot flashin' mess. Whatever.

And the food. Oh, wow... the food. I'm going to turn into a Lemon Creme cookie before this is over with. Or a container of Hagen Daaz Salted Caramel ice cream. I have very little willpower.

Just a snack

I'm so damned ragey. I have rage. I can't write about it, or much else, though, because my brain ditched me somewhere around the time that damn needle was put into my buttcheek.

I have these thoughts? And when I think them? They sound awesome. Then, when I write them down? I can't decipher (see what I did?) them sober or drunk. Not that I'm getting drunk, because that causes more friggin bloating and less operational thinking.

So, what do I do with this rage? I thank baby Jesus in swaddling clothes that I'm on Prozac every single day and I try to stay away from the general public. True story.

It's been easy to stay away from the public for the last couple of weeks because it's either been raining or I've been so swollen, I've needed to stay inside. I can't waddle to the pool. But, with sunnier weather on the way and these fluid pills finally working, that hermit plan is kind of over. I need to remember, "inside voice."

I also make really awful memes. You're not seeing them because they, well, suck.

See?

Let's just hope that that the remaining five months of this crap are quick, without incident, and my kids finally get to go swimming because they have to get out of the house and stop leaving Legos and trains everywhere. 

I also need to keep, "Jessi, inside voice," on loop in my brain, I suppose. 

Sometimes, this female crap sucks. 

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.

No One Really Knows

The thing about parenting autism, no matter how many specialists, therapists, special schools, and so forth you take your child to, is that we, as parents, just don't know what the end game is in our child's development. We don't, do we?

We, as parents, have dozens, sometimes hundreds, of opinions thrown at us of where our child will be at age 18 or 21, or 25- the magical aging out deadlines in many cases for services.

It's like we're being told that this is the finite point of development.

We don't even know what that means, but we fear the hell out of it. 

Parents are told that their nine year old has the emotional maturity of a four year old and that their fifteen year old is intellectually on the same level as an eighteen month old baby. We're told, at times, that our children will never live independently or get married. That they will never work "normal" jobs. The methods of measuring this criteria aren't exactly well explained, but place a lot of fear and anxiety into us because as soon as we hear this information, we feel as if we must do something other than feel guilt and pain.

However, we just don't know what, exactly we're supposed to do. More therapy? Less therapy? Social skills classes? Another school? Meds?

We just don't know, do we?

I wish that those who dole out this advice would understand we worry about the livelihoods of our children night and day. It's what drives us to fill our brains with information. It's what challenges us to find alternate solutions when we're told there aren't any solutions left. This is what makes us lobby politicians and sue school districts; to push for so much.

If you're an expert telling a parent what to expect down the road, make sure your criteria is correct and on spot, not something you've yanked out of the clouds from your "years of experience." Your years of experience might just be you phoning it in and getting something wrong.

Parents, I think, would commit arson to know where their child will be ten or twenty years from now. It's not that we're being given the answers we don't want, it's that the answers are so abstract and seem so rote, that they sound hollow and untrue.

We see these examples of autism success in society and we don't know whether to be excited by the prospect or jaded. None of those examples are held up to us in meetings or appointments, only doom, deficits, low IQ scores, and then a soft example of how well our child is doing. Kind of like a pat on the head after a kick in the gut.

When our discussions, meetings, and appointments are finished, we pull our chins up, devise new plans... and we still don't know. We try to give everyone a seat at the table, listen to everyone who knows "everything," but no one knows a damned thing.

Especially us and them.

Surely the keepers of the proverbial magic eight balls will at some point clue us parents into how they know our children better than we do?

Some days, I feel like the majority of parents feel like this is our eight ball answer:

Image by: Angry Dog Designs
  http://angrydogdesigns.deviantart.com/art

I just hope that's not how it is. People need to do better.

This is Hard

*Editor's note: I'm writing about something I swore I never would within this post. Please understand that I'm doing this not for people to tell me, "I'm sorry," but to make other parents raising autistic children know that this happens to some of us, too. 

I'm jealous of my son's school. Of the teachers, paras, aides, lunch ladies... every damned one of them who see him day in and day out. Why, you might ask?

Because some days I feel like that school gets to see the best of my son.

School is highly regimented and Morgan loves rules. He thrives on them. The color code system of behavior is something he responds well to and he wants his peers to think well of him. At school, he is, I think, "on."

"Morgan held the door open for me today, I just had to tell you that!" "Oh, you're Morgan's mom? He's such a darlin'!" "Morgan's so funny, such a rule follower!"

Yes, he is all of those things. At school.

At home, 80% of the time, he's those things, too. But since he's in his safety zone, he feels free to fully melt down. To lash out. At me. And that hurts me. Literally.

I love my son and I have no doubt that he loves me. We tell each other that constantly and hug a lot.

He loves me so much that I am the person he feels the most comfortable lashing out physically at and then comes to me, while I'm still shaking, and needs to be rocked.

It's rare, but it happens. We both cry, shocked that this swirling dervish has just consumed him again out of no where, but it came from somewhere, as we both know. We try to calm ourselves, him first, me later, and press on.

This is trust, this lashing out only at me, I've been told. I'm thankful it doesn't happen to anyone else, but I'm resentful that no one else "gets" it.

He can be rude. He can be hostile. At homework time, I'm walking on eggshells. I never know what to expect.

Weekends are different. He loves his train movies and going places- freedom.

But during the week? I'm nervous for the landmines that I could trip on.

And it's not his fault, nor mine.

I love my child, autism and all.

But, damn.

This is hard.

So Different: Tale of Two Kindergartners

I've mentioned several times throughout the school year how jarring it is to see Bay's work come home and compare, though I shouldn't, to where Morgan was at that same age.

The handwriting is different- Bay's is neat where Morgan's barely existed. The coloring is different- Bay is in the lines, where just this year Morgan finally colored an entire picture. The drawings- Bailey draws everything he sees or imagines and in great detail, Morgan still draws mostly in trains.

My children are so different, it's nearly painful. There is not a favorite son, there are just two different sons, as if they are each from different parents.

In Morgan's kindergarten, we were speaking of him being behind, not communicating, melting down, scripting, and playing "inappropriately." There was the fear of him not retaining information. Basically, there were a lot of deficits to work on and not a lot of strengths shown except his love of patterns and math.

In Bay's kindergarten, we have a child who gets into trouble for talking, who is easily bored and blows through assignments, and who "contributes a lot" to class discussions as his teacher told me after a talk about MLK went a bit sideways with me. He absorbs everything and starves for more. There is no talk of deficits unless it's about his speech impediment. He has a hard time making friends because he blurts out God knows what, usually something he's overhead me say.

I requested Bay be checked for gifted. It hurt, for some reason, to ask. I felt like I was betraying Morgan and all of those years of "well below benchmark," "well below average," and "borderline intellectually disabled" marked on so many tests.

I felt like I was slapping my special needs mom friends in the face somehow.

So I couldn't say anything when I was told that Bay "flunked" the test by 2% . In kindergarten, a child must make a 99% on the test to be considered gifted, Bay scored 97%. I'm not upset by any means, I'm kind of relieved. It means that he won't have advanced classes this year. It means he'll be "regular" a little longer.

But then I felt like I was shorting Bay for not being upset. Am I supposed to be upset? I was told that kids his age rarely score this high, they normally are in the lower to upper 80s, maybe lower 90s. That next year, he'll be retested and likely be placed in the gifted program.

I wonder if the woman telling me thought me strange for not being excited. Or if my terror showed on my face.

There is irony in having Bay tested for gifted while ordering Morgan's three year evaluation to be done for autism, and everything that entails- IQ tests, etc.

There is also pain in that I worry about both of them, but I worry for entirely different way. I like someone is pulling me in opposite directions and it hurts my heart. What happens if, by encouraging Bay, I hurt Morgan?

I'll always encourage my children to work hard and do their best. But what happens when their best makes the other one feel awful? And how do I manage this?

Autistic Traits Vs. Autism

Ever hear the phrase, "Oh, I have autistic traits, too!" when telling someone you or your child has autism? Or have you ever been insulted, as I recently have, that you might only have autistic traits and not really autism?

Folks, there are big differences between those two. Big. Huge, even.

It's like that. 

Perservation:

An autistic trait might be having an idea stuck in your head for a couple of days.

Being autistic means you perservate upon this idea for days, weeks, months, years even. I replay conversations I've had with people up to ten or even twenty years ago and think about how I could have responded differently.

Part of my autism and then PTSD from being repeatedly sexually abused means that my mind was stuck, for years, on how I could have prevented any harm being done to me. It still is, at times, though therapy has helped.

Perservation also means obsessions, or concentrated interests. Those come and go. I collect things- hobbies, objects, and intangible interests with zeal. When I was a kid, those things were rocks. Big, small, minuscule. I used to dig rocks out of my brother's bike tires, my parents car tires, the ground, our aggregate driveway, the creek beds... you get the idea. I also collected shells and would memorize what kind they were. I was into history and would gobble up any kind of texts that I could on eras I was interested in at that time. It was hard for me to snap out of my reverie for Laura Ingalls Wilder. I was convinced I needed a corset and hoop skirt. I also collect(ed) masks, and for a brief period, I collected dolls until they creeped me out.

As an adult, I've perservated on cleaning supplies (that's driven a lot of people crazy, since I don't actually use them, I just want to try them out), making hair bows, sea glass, carving pumpkins for 24 hours straight, my kids' birthday cakes, topics of conversation (which is why I have this blog about autism), etc.

Routine:

Someone with autistic traits might like things scheduled just so, but do they have meltdowns if the routine is disrupted? Or if they're late? Do they panic if they're late? I cannot answer those questions.

I like my routines, and am flexible due to the kids, but when Morgan was a baby, I had such a set routine I would flip out if anyone (including me) disrupted it. I was convinced if the routine wasn't followed, then the Earth would stop, or something like that. I would cry, convinced that I'd just sentenced myself to be a horrible mom. I was phobic about this being derailed. It turns out I was partially correct about his routine being disturbed because he really thrives on a schedule, but I can't figure out if that's nature or nurture. In this case, maybe both?

If my mom was more than five minutes late picking me up from school, I was a hot mess. I would panic, thinking she'd been in an accident, forgotten me, or something just as bad.

As for being late, I panic. I panic if I'm early. I need to be prompt. I hate it. But there is a niggling feeling in the back of my brain that all hell will break loose if I'm not exactly on time. 

Stimming:

Everyone stims. If one smokes, twirls one's hair, bounces one's leg while the legs are crossed, chews on fingernails, etc., that's stimming. Those could be deemed autistic traits that neurotypicals express.  Likely as not, you're doing this unconsciously.

Just as I'm unconsciously viciously tossing my hands (flapping, but it isn't happy), pacing, do this jaw popping thing which make me look as if I'm trying to dislocate my jaw repeatedly, and rub my hands down the tops of my thighs (think: I look as if I'm trying to get warm) when I'm nervous. I probably do more, but it's not been pointed out to me.

I stim to release stress, usually. If I'm aware of it, I sit on my hands. My earliest memory of doing this is in third grade when someone pointed out the rubbing thing to me and said it looked weird.

Social situations/ away from my comfort zone:

I know that some neurotypicals could say that they have autistic traits here, which manifest as social anxiety, agoraphobia, etc. Social anxiety is a horrible thing to suffer from. I use the term "suffer" because that's what it is- suffering.

I hate a lot of social situations and can only do them effectively, that is, without embarrassing myself too badly, in small doses. They drain the hell out of me.

If it's something at the kids' school, I play the role of the take charge mom who gets things done and push through. I imagine myself as a "normal" mom who has no problem with things like this, and concentrate on the kids. I also try to focus on the one parent I'm comfortable with and talk to them. I'm polite. I tend to try to look visibly relaxed, even though I feel myself being drained. I thank God that there is a limited time period for everything and I know exactly when I can go home and collapse.

At parties, though... ugh. It was easier, to a degree, when I was younger and had no children because I could just get bombed out of my gourd and just be the girl who acted a little crazy and said what she felt with little to no repercussions. Now, when I go to company events with my husband, I feel really awkward. I never know what to talk about or say. Invariably, whatever comes out of my mouth is the wrong thing, or I think it is. I don't know how to read people's facial expressions. I inwardly panic the entire time. I will replay conversations in their entirety for the next week or two, trying to figure out if I embarrassed my husband or myself. I'm always afraid that I have.

Then, there's the bane of my existence: shopping for anything. I get itchy, panicky, and need a sedative half the time. It doesn't matter if I am shopping for groceries, clothing, or shoes. If I'm grocery shopping, there are too many smells, bright lights, beeping sounds, visual clutter, and people. Always people. Clothing shopping is the final circle of Dante's hell- thank God for ordering online. I love shoes, but I wish I could be in and out, and never have to try on anything.

Self care:

This is a biggie, I've found.

I don't know if it's an autistic trait to be lax or over zealous with hygiene. I just don't know.

I know that I'm able to care for myself, but sometimes when I think of every single step necessary to complete a shower routine- from the running of the water, to the washing, shaving, washing of the hair, to the rinsing, then drying, then moisturizing, then clothing, to the blow drying, then more moisturizing... I'm exhausted and it's hard to want to do. It's easier to not do it. I do it, but running that mental list through my head and then mentally prepping myself to do it, then doing it, I'm tired after.

I've heard it said about autistic women that we're plain or we don't wear makeup. Well, count yourself lucky in my case that I've gone that far and even put on make up.

Meltdowns:

These aren't your average hissy fits or rages.

When I feel a meltdown coming... it's like a tsunami of emotions is starting at my toes and rising. It could be days before I explode in some way. Everything feels electrically charged. I must, must, must find an outlet. I'm scared of the meltdowns. I'm panicky and need some place safe to escape. I used to feel them coming and be convinced that something bad was going to happen. I didn't realize that this was anxiety manifesting and that the "bad" was me, getting ready to blow. When I feel like this, the smallest thing can trigger me.

I hate meltdowns. I hate the things that come out of my mouth. I hate feeling nearly primal. It's like everything bad that I've ever bottled up comes spewing out. As if I'm a capped off carbonated beverage that's been shaken too much and someone has finally released the pressure.

After, I'm shaky for hours or days. I'm not always sure what I've said. And I feel discombobulated.

Filtering:

Plenty of people claim to have zero filters, so I'm not sure if this is an autistic trait or not.

In my case, if you ask me a question, I'm going to give you a dead on honest answer, whether you like it or not. I don't tend to sugar coat a lot of things, unless I really care about someone. And even then, my version of sugarcoating really isn't sugary. It's more along the lines of, "Well, I think your boyfriend is a flaming jackass, but hey! If you're happy, then I'm super happy for you!" I literally have bit my tongue to keep from blurting things out and I find when interacting with people online that the backspace or delete buttons to be my best friends.

Facial recognition/names to faces:

"I'm bad with names, but I always remember a face." Ever hear that? Can you relate to that? I can't. 

One thing my son and I have in common is this thing called prosopagnosia, or face blindness.  I never had a name for it until Morgan. It's where you can see someone day after day and you might not ever remember their name. I think his is more severe than mine, but we've never really compared notes. Mine has been much worse since my first seizure two years ago. I use tricks to remember people's names, like "Kim" is the one with red hair, has a child in Morgan's classroom, loves boots, and has a slight lisp. I know the names of the ladies who work in the front office of the school, but unless they're wearing their name badges, I can't tell who is who- and they look nothing alike.

This is an embarrassing thing to have as an adult. I'm always waiting for someone to reintroduce themselves, especially if I've met them several times and still can't remember their name. I have a habit of calling people by the wrong name, so does Morgan. Odd how grown ups don't get mad at a child but will at an adult.

Sensory issues:

I don't view sensory issues as an autistic trait at all, anyone can have them, hence the term Sensory Processing Disorder. The way one deals with it, though, I do believe is affected by one's neurology.

I have to have fabrics of a certain feel and weight, otherwise I go into a meltdown fast. Last year, I was trying on dresses (already a stressful situation) for a dinner and put on this pretty dress. I loved it. However, the fabric was "wrong." I began to feel itchy, though the fabric wasn't itchy. I began to panic. I couldn't reach the zipper in the back. I needed to get out of that dress. It was suffocating me. I was a hot, crying, blubbering, mess by the time my husband brought me back another dress to try on. The next one was even worse. It clung wrong and the seams rubbed to the point I swore it felt like I was being burned. Cue panic. He didn't get it... and neither did I, except that I knew I couldn't wear either. I wound up not going to the dinner because all of the dresses were "wrong."

My clothes have to be soft, of a correct weight depending on the season, have a lack of zippers on the shirts, no tags (or I'll cut them out), certain necklines, certain cuffs, etc. Basically, I make shopping for me a pain in the ass.




I'm not saying that people cannot have autistic traits. I hope that nothing I've said has negated that. But when someone tells me or another autistic adult or even a child that perhaps we only have autistic traits and are not autistic, it's insulting.

Basically, it comes down to this: medication can help someone get control of or even temporarily rid them of their autistic traits; medication can help an autistic like me only control my autistic traits, should I choose that route. But a pill can't fix everything and a pill certainly won't make me less autistic. Ever.

Don't ever tell someone who is "openly" autistic that they aren't autistic, that they only have autistic traits. It's the equivalent to telling someone who's gay that they aren't really gay that they only have gay traits. See the similarity and where the insult might fall?