Wednesday, November 19, 2014

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.

Thursday, October 2, 2014

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. 

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.


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