Thursday, March 19, 2015

My Unquiet Brain

I wrote much of the post below a couple of months ago, when I was at rock bottom and off of my medications due to a lack of insurance. I'm better now, much better. If you or someone you love has mental illness, please, for the love of all that's holy- get help and take your meds. Please. 

I have a mental illness. A couple, actually, with PTSD and anxiety being the bigger ones. Normally, I am in control of it. I take medication because I love myself and my family enough to know that's what's best for me. Mental illness is a really nasty bitch. It is an unwanted or sometimes unnoticed houseguest who takes up too much space in my head, appearing when I have things to do, a life to live, and kids to raise.

People have this preconceived notion of what it looks like, of how to be "crazy." I'm usually not that image- a 30something mother of two, well spoken, with some anxiety. People don't see me out of control. They can't read my thoughts, which dance across my brain like an out of control ticker tape. 

It makes me believe that there is kind of beauty to nearly losing myself. And maybe there is, but I haven't found it. Sometimes it's freeing to rant, scream, and rave, to speak in non sequiturs. But then, after, I see the faces of the people I've hurt and know that this time, I might have gone too far. I can't take any of that back. I can apologize, take my damn meds and swear that this "thing" won't ever happen again. 

But it will, because the only thing certain about being mentally ill is that it will continue to happen. You can't wish or positively think it away. It's not just about being sad, or being anxious. But it's also not like the movies.

When I'm in control of it, mental illness is a bother, but maybe not so much a big deal. Mania can be fun, to an extent. I once spent 24 hours straight, carving pumpkins into complicated designs. The kids loved them. My husband, I think, saw it for what it was and knew that no amount of sleep lost was worth that reaction from the boys. 

To acknowledge that all of it, held tightly in check with medications, is spiraling out of control is awful. Knowing that my babbling to my husband or mother has gone past the point where anything makes sense makes me feel insecure beyond belief, but I just can't stop. I speak in circles, stim like crazy, and pace until my legs burn. I stay awake for days, one thought tripping over into the next until I'm so mixed up, I have a hard time remembering what I'm supposed to be doing. 

Mania tricks me into thinking that being unmedicated is the best option. My senses and thoughts aren't dulled by by the chemicals and I believe myself to finally be healthy. That I've shed these layers of stuff. But I haven't. Those layers are still there, with crystal sharp clarity, though I cannot see them for what they are- thoughts which should be examined, impulses controlled, and tears unshed. That thinking is when I'm at my worst. 

It isn't just the mania or the anxiety which wreck havoc on my brain. It's like walking a tightrope over an abyss that you're afraid to venture into. The knowing that I am completely out of control, that this time might be the time I step too far over the edge, compounds itself into an ugly paste which spreads all over me. I get incredibly angry with myself, but I try to never let go enough to really cry.  Mental illness tells me that crying is weak.

Mental illness can be so wrong. 

I once lied to my therapist so convincingly, he proclaimed me "healthy." I lied so well, I believed him. I told Thomas that I was "good." I was just tired of talking. 

I wound up in that office a year later, begging to be fixed. And I was. And so, things were okay for a while. Well, as okay as they can be. I'd trip up and not take my meds and screw something up, or I'd take them late and make Thomas worry. But still, I was that image of control I needed, with a few exceptions. I happily involved myself with the kids' lives even more than I already was, I relaxed some, and I had fun with life.

But then, last fall, my husband lost his job. We lost our income, our insurance, and my idea of our stability. I lost my meds, my lifeline.

I was drowning and couldn't ask for the life raft. Oh, I thought I put on a pretty great front. I was wrong. I distanced myself from friends and family. I stopped wanting to talk to anyone, even my closest friends and sister. I was everywhere, all at once, in conversations. I paced like my life depended on it. I set alarms for everything on my phone, afraid I'd forget something. I had Thomas take the kids out, just so I could breathe. But I couldn't breathe. I could only pretend.

And I pretended really well. But pretending isn't living, it's only being able to survive.

I had the worst panic attack in recent memory on my birthday. Something stupid, something incredibly little, set me off so badly I screamed and ranted at Thomas in a voice I didn't recognize. I tried to walk away- I got out of the car in traffic. I got back in, later, and told him to take me home. I needed to be alone.

That day, I realized that I'd lost that tenuous grip I'd been keeping. I scared the hell out of myself.   Three weeks later, he got his new job. There was hope. There was a hell of an insurance package.

We moved across the south. I've been trying to get a grip on things since and I'm doing pretty well. Today, I was able to get back on the medications I desperately need in order to quiet my brain. Within an hour of taking my meds, my brain, normally so mired in crap, was quieter. I'm hopeful it stays that way.

Folks, being mentally ill doesn't always mean what the books tell us. I'm a reliable person, for the most part. I take excellent care of my children.  I love my family and want to be actively involved in their lives and my own, not just a spectator. And so, I take my damn meds.

Monday, March 16, 2015

Doing Enough

Sometimes, I look at the search strings which lead people to this blog. Usually, they are funny, though strange, and I get a good chuckle out of them ("burn all of the Thomas trains" is a favorite). However, today I saw the string, "I don't do enough for my autistic son." I felt pain reading that, a familiar pain which is usually throbbing dully inside of my heart and increasing my anxiety tenfold.

I think, as parents, a majority of us feel like we could be doing more to help our children. When one of our kids has specialized needs, though, that worry is probably amplified. We often turn to social media as a measuring point, whether we intend that or not. That's probably not the healthiest thing to do.

 I felt that a checklist, in no particular order, would be handy to tell if you're doing enough.

1. Is your kid happy?
2. Is your kid safe?
3. Is your kid in a nourishing and encouraging environment?
4. Does your child express, through vocalizations or movements, that they feel comfortable in their environment?
5. Are your child's immediate needs (clothing, food, shelter, and education) being met?
6. Is he or she being allowed to experience childhood, in their own way?

If you answered "yes" to these, then I would say that you are doing enough. Could you be doing more? Of course, but don't allow the drive to do more be a detriment to your child or you.

Don't look to your neighbor to compare. Your child is an individual with individual needs, and shouldn't be evaluated by what someone else is doing. I'm incredibly guilty of doing this, more so in the past than present.

Lately, I've been trying hard to let go of doubts about my care for Morgan and Bailey, who has his own special needs. I know when I do wrong, but I'm trying to focus on what I'm doing right. Morgan dictates, through his emotional well being and progress with new challenges or old, how he's doing, as does his brother. Letting go of preconceived notions is making me a better parent, or at least a far more relaxed parent.

Morgan's happy, for the most part. He's a prepubescent boy, though, so his emotions change like the Virginia weather. His needs are being met. He's getting an incredibly appropriate education, he's nourished, and he appears to be thriving. That's good enough, for now. Should new challenges present themselves, we will meet them head on.

But, some might ask, what about socialization and getting "on level?"

First, "on level" is a subjective term that means something different to everyone. Is your child lagging in subjects? Does he or she appear to need another therapy stacked on top of the ones he or she is already receiving? Does he or she vocalize or emote that he or she feels the need to be surrounded by people? Or feel the need to interact with others after school?

If the answer is "no," than let things be. It's hard to make friends in an environment that's focused on the "proper" way to play. It's hard to thrive when your entire life is scheduled. If your child could benefit from something like what is mentioned above, then go for it. But watch for signs of burn out. Too much therapy is just as detrimental to the well being of a child as not enough.

Finally, don't beat yourself up and cast so many doubts upon your parenting that you cannot see how well you're raising your autistic child. Also, don't take too much advice from the internet (yes, I see what I did there). None of the people in the peanut galleries know your child like you do. Don't allow someone whom you've never met to cast doubts upon your parenting. They aren't the person raising your child.

Allow your child to see you happy and confident while you're parenting. That helps, a lot. And, honestly? We're all making this stuff up as we go.

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.