Wednesday, September 17, 2014

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.


Wednesday, August 20, 2014

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.






Friday, July 11, 2014

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. 




Thursday, June 26, 2014

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. 

Sunday, June 15, 2014

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.


Wednesday, June 11, 2014

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.

Tuesday, June 3, 2014

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.