Monday, April 4, 2016

What Autism Has Taught Me

I've been doing this parenting autism thing for about eleven years now, knowingly for sixish, and have had knowledge of my own autism for about three years. It's been one heck of a learning curve.

In that time, autism has taught me that it's never static and always changing. Yet, whole days, weeks, months, and even years go by that seem like Groundhog Day, where the routine rarely seems to vary. In that rigid routine, though, is a constantly evolving hub of skills, understanding of the world, and hard won accomplishments- sometimes so tiny, we have to squint to see them, but they're still there.

Autism has taught me that there are many ways to slice an apple, pizza, sandwich, toast, etc., but only one correct way. Any other way than the right way will result in mutiny.

I've figured out that it is, indeed, possible, to be asked the same exact question 1,583,923 times in a day and then get asked again because echolalia.

I've learned that no amount of worrying will ever fill my bucket of fears, there will always be more things to consider, examine, and worry about some more. Because of my own autism and comorbid of severe anxiety disorder, I get the extra fun of perseverating on topics such as "what will middle school/high school be like?" "have I taught him x, y, z?" and, my personal favorite, "what's the future going to be like?" Because thinking of something like that while you're pacing and slightly manic at 3am just adds a little shot of fun to it all.

I've learned that things like milestones, time tables, and age appropriate and pretty much entirely made up and will never apply to us. Once I learned this, I was much happier.

Autism has made me realize that there are reasons why I can't learn something with just one or two demonstrations, thanks to the processing disorder side of things. This would explain why I get stuck on instructions, or forget steps in multi step problems. Morgan's the exact same way, but to a more severe degree.

I've figured out that the right fidget or sensory object at the right time can solve just about any problem, at least for a few seconds.

I've learned that I don't need to be surrounded by a ton of people who may or may not "get" me or my son. However, a small but great support network, complete with people who are willing to listen, learn, or are already "there" themselves, is key. I don't even need to actually know these people in person- I threw out the whole, "don't talk to strangers on the internet" thing a long time ago. Some of the people I've met through Facebook groups and this blog are now some of my closest confidants.

Autism has taught me that I have a resiliency within me that I never fully realized. One that will walk into conference rooms for IEPs and quietly demand the utmost best for my son and not back down until I find a way to get it.

The most important lesson autism has taught me, though, is that there are many ways for a family to be normal- it doesn't need to look like a modern Norman Rockwell painting. In our case, normal is discussion of IEPs, Thomas the Train with our eleven year old, quiet discussions with our eight year old about his worries for his brother, visiting every train museum we can find, and speaking as bluntly about autism as possible. Or, really, speaking as bluntly as possible about pretty much anything. We don't really do filters here.

Autism has taught me so much. I haven't been the most willing student at all times, and I'm still not. However, this education has been worth it because Morgan's worth it, and so am I.




What has autism taught you?

Thursday, March 31, 2016

Spring Cleaning

I cleaned out my Monica Gellar closet (if you don't know this reference, we can't be friends) and realized it was a metaphor for my mental illness. It was like the Pandora's box I haven't wanted to open for years, and yet, I knew it was time. I needed to do some cleaning, both figuratively and literally. 

This is my closet now. 

                                      
Kind of pretty, isn't it? It looks organized, I have a nice little work space. Things are in specific places, and I even have a spot for my taxidermied animal thingy. 

I'm showing the "after picture" first because, frankly, it will look better in the preview picture in the link.

However, this is the before. It's bad, huh? 
The closet had been a dumping ground for randomness since the day we moved in over a year ago.  took four or five huge lawn and leaf bags of trash and four lawn and leaf bags to charity, twelve hours, and me falling down a massive rabbit hole. 

You see, as I was purging, I realized that I hadn't touched some of that stuff since we lived in Tennessee- in 2012. That's three moves, an autism diagnosis (mine), a slight mental breakdown (again, me), another severe endometriosis diagnosis for me, and so much more. 

As I was digging deep into crafting supplies, I kept wondering "why?" Why in the ever living shit did I have some of this?! I mean, at one point I was selling hair bows and accessories, so some of it made sense, but Jesus, why did I need five rolls of ribbon that were the exact same color? What the hell was going on with me when I was buying this stuff? And why was some of it so ugly?

Then, I remembered. And I got mad. I remembered Thomas and I fighting like all hell five years ago about my spending money on this shit and my denying it. The craft store was better than eating because I was steeped in anorexia and mania and I was out of control, all while trying so hard to pretend I was in control. It was when I was battling the school on IEPs, and Morgan's placement, and so much more. This was the time frame I became and advocate. 

Before that time, I broke off contact with my biological father. I fired my shrink. I fired everyone. I went off my meds. I went full blown wide open. I lost my proverbial shit. All of that was in the closet, too, in pictures, journals, and drawings I'd hidden away from myself. 

Mental illness- it had filled up bins, boxes, baskets, and bought hundreds of rolls of ribbons, and I'm not even sure how many fat quarters of fabric. I had hoarded and, scared to death of losing more things and I was losing control, I kept it all. 

I threw out guilt as I threw out cards, papers, bags, notebooks filled with manic scrawling. Rage and sadness filled me because I wondered how much time I've wasted over the years due to this crap in my head. 

By the time I was done, I felt as if I'd taken a long and hot shower.  It was as if by unleashing my compulsiveness in a healthy way, I'd been able to clean out the recesses of my brain.








Tuesday, November 24, 2015

How to Handle a Holiday Gathering

*I get that I've added political commentary which can be divisive. The whole point is to distract people from autism. Please take this all with the humor that was intended. 

It's the most wonderful time of the year! With that comes family gatherings where supposedly well meaning relatives say the most absurd shit ever.  I polled some autistics and parents/spouses of autistics to see what commonly gets said at the dinner table. Then, in my limited wisdom, I've created diversionary answers/rebuttal questions. They are conversation enders, if you will, and will succeed in taking the focus off of autism or your "lack of parenting skills." If you drink, please be sure to have libations readily available.


"Have you tried spanking him?" Inform your family member that you've tried every available method of discipline. And then, offer up this gem: "So, what do you think of the Syrian refugee situation?"

"Ya think he's gonna get normal at all?"Answer that autism is a life long neurological disorder, and there isn't a cure for it. Then, state, "I'm voting for Hillary. She's a class act."  *This also requires a bite of pie and a swallow or five of wine.

"God only gives us what we can handle." Take a healthy slug of wine and then, "Right now, we're all handling Donald Trump."

"He'll be fine, don't worry so much." Full glass of wine, straight into your mouth. Then, "You know who's going to be fine? The American public after we all convert to socialism."

"You are doing a complete disservice to him by labeling him!" Deep breath.. In, one, two, three... Out, one, two, three. Take a generous gulp of hard liquor, and then, "Just like we label white shooters as 'mentally ill?"

"Your son just licked me! Again!" "Ohhh, Aunt Mae, he's just testing your American patriotism." Congratulate yourself on having a rebuttal with a full glass of wine.

"You know, autism is just a fad. In a few years, everyone will be autistic." Drink. Then, "You know, Hilary 'was there' on 9/11." That'll stop all conversation.

"I feel so bad for you!" Two glasses of wine in quick succession should be funneled into your throat. Then say, "I feel really bad for Obama. He never gets any slack." 

"You/he/she can't be autistic. You aren't re******." "You're a real dick, you know that?" Sorry, I have nothing better than this.

"He'll eat when he's hungry." Grab the bottle nearest to you, drink, and then hit that person over the head with the aforementioned bottle. There is no rebuttal to this, only laughter and mild violence.

So, maybe these things won't help during the family gathering, but they will make things more interesting and possibly even divert your relatives from discussing what they think about autism for just a few seconds.

Happy Holidays!

Monday, November 9, 2015

What I want Special Education Teachers to Know

Dear sped teachers,

I've made contact with many of you as of today. With few exceptions (because there are always exceptions), you are wonderful at your job, or you strive very hard to be the best you know how. However, there are some things I want you to know.

"Grade level..."
What I love about the special education process, and IEPs, is that we have a one-of-a-kind chance to meet the child where they are, instead of where people feel they should be. Once we've established a baseline, we can work more on goals to achieve. For the most part, our experience with this has been good.

But I feel as if the special education system sets some children up for failure.

Too many teachers are forced to focus on "grade level" achievements. What if my child isn't supposed to be on this grade level? What if there really isn't a point in teaching volume, mass, and measurement right now?  What if I'm okay with my son reading Thomas the Tank instead of Harry Potter?

"On grade level" is something a majority of us veteran parents stopped caring about a long time ago.

Platitudes...

You don't always have to tell us that our children are "secret geniuses." Genius is measured in ways my son is not. I fully believe that my son is smart, that all people are, but I understand that, on paper, it doesn't appear this way.

I fully grasp that, in an IEP meeting, you are attempting to deliver news that isn't settling. But give it to us straight. We don't need a bedtime story, we need facts. Perhaps I'm in the minority of parents here, but I don't want fluff and a hundred anecdotes about the "cute" things my son may do. I live with him, I know him, and I know how cute he can be.

"Helping..."

Don't help my child so much that he cannot do something independently, like an art project. I can count on one hand how many projects have been sent home that I know my son did on his own and I treasure every single one of them. Those which were clear to me that he didn't do? They go in the trash and it hurts like hell to see someone didn't think my child's train scribbles were good enough. He's good enough.

Please tell the paras to back off. If a cutting exercise or something of that nature appears to be too hard, take a breath and let him do it.

The same goes for work. My son was "helped" so many times with so many things that, upon assessments or homework, he couldn't do these things on his own. Who is that really helping?

It is a disservice to any child to help to the point that it renders them unable. Physical disabilities notwithstanding, independence is what a majority of us are after.

Skills...

Some of us really don't care if our child can perform quadratic equations. However, we really do care if they can count money, read a calendar, and balance a checkbook. If my child doesn't "qualify" for the life skills room and is forced to keep learning about why the Underground Railroad isn't really a train track (three years and running!), I'm going to need a better reason than "he's verbal." 

I understand your hands are tied in a lot of cases because of state regulations. But listen to the parents' concerns. Don't automatically say, "he'll get it... eventually." Some things aren't that important to us. We want our children to succeed, yes, but maybe our definitions of success are different than yours.


In closing, I want to reiterate something I've said time and again- I couldn't do this without you. A good special education teacher, or any teacher, is worth his/her weight in gold. We mourn the good ones we must move away from, and will remember you for always.




Friday, November 6, 2015

Anatomy of a Meltdown

*Below is an anecdotal account of what it's like to melt down. I have used information from autistic friends. However, I've tried to tell this in a first person narrative in order to keep my friends' privacy intact. Please note, I'm not speaking of aggression. 

I'm really terrible with managing my emotions. For me, feelings fall into two categories- forced apathy and everything else. When I melt, I melt big.

Sometimes, I know it's coming.

There is a tsunami of emotions racing through me, maybe for an hour, day, week or even month. I'll congratulate myself inwardly for not blowing up, for not crying. I try to appear as "normal" as possible, but that add to the wave I know is coming.

I start to notice that sounds sound louder, textures sharper, emotions are "bigger." I feel like I'm in a pressure cooker and it scares me.

A meltdown can be described as peddling a bike up a big, slippery, and steep hill. It feels like a heavy load is attached to the back and front of whatever I'm fighting. I push and push to get to the top, battling my emotions and flight or fight reflex, just barely feel the crest, and then, I start to speed out of control and I fly down.

I cannot stop, it's all systems go. My brakes no longer work and any coping mechanism I've developed is tossed to the wayside. I might get hurt on the way to the end, or hurt others, but I know it's coming and, to a degree, that makes me feel better.

I can't stop until I crash at the bottom of the hill.

Pieces of emotions are everywhere I turn. It feels better to finally explode than it does to keep it bottled up.

Sometimes, I don't remember my melts accurately. I do and say things without any impulse control. I throw things, say things which aren't true, and cry a lot. I shake, I have millions of racing thoughts. I get dizzy, even.

My melts can last for hours. I try my damnedest to stay out of other people's way, lest they get hurt by my words or flying objects. Most of the time, I'm avoiding my triggers left and right, top to bottom. I'm trying to not fall apart.

When fight or flight have kicked in, basic instinct often takes over. Autistics lash out at the people around us because, often, they're safe. We know, though not in the moment, that our safety net will hold us.

You have to understand that, when you're on the receiving end, there isn't much a person can do to reign in the overwhelming feelings they're feeling. If we've reached the implosion stage, it scares the hell out of us. Nine out ten times, things are going to happen that would never occur under optimal or sub par conditions. We've tried and failed to keep things in check.



So, what can you do to help an autistic during these times?

Allow the storm to rage until it's over. Bottling up what's remaining isn't going to help anyone.

Ensure that they (and you) are safe, if possible. Don't chase them unless they're bolting into traffic or at a real risk of hurting themselves, chasing only heightens the "flight" in fight or flight. Speak calmly, no matter how hard that may be. Sometimes, being held helps. Applying deep pressure also helps.

Allow them to stim, to yell, pace, and cry. Don't tell someone, "Suck it up" because we can't. If you know the person's triggers, try to keep those at bay.

The best thing anyone can say, for me, is "I love you. It's going to be okay."




If you're autistic, how do you manage your meltdowns? What can others do to understand and help?


Thursday, November 5, 2015

Autism, For Me

Autism for me is everything.

Autism intrinsically makes up every aspect of my daily life. I cannot separate autism from my being any more than I can change my eye color. I feel it down to my soul.

Autism means sensory assault in un/expected places. Beeping sounds, construction noise outside of my work, lights humming, and the pitch of people's voices.

I hold myself together until I cannot any longer.

Autism means that my fingers and hands dance along surfaces, teasing out the textures, finding solace in silk and shying away from slimy satin. It tells a tale through those hands. Autism tells people if I'm agitated, happy, or at peace.

Being autistic means that I feel as if everyone in the world who isn't me was handed a guidebook to life that isn't written in scribbles, hieroglyph, and all of their chapters are intact.

It means that if I watch someones face while talking, I miss the entire conversation. "Look me in the eyes if you're telling the truth," is a phrase which has terrified me from toddlerhood.

Autism means that I have decent intuition, but I rarely trust it. If my gut feeling is so different from how people are reacting to something, doesn't that mean I'm wrong? No, it does not.

Being autistic and not being diagnosed until later in life means that I've gone most of my life feeling like a foreigner in a non native land. Like I speak their language, but I don't comprehend 80% of it.

Being autistic is wonderful and awful, all at the same times. I have co-morbids along with my diagnosis that impair the hell out of me.

Autism means that I appear social until I cannot any longer. I get social hangovers from working retail. This means that I choose not to socialize on my days off, content to stay with my family and be quiet.

Being autistic means I'm shit with relationships. I'm loyal to a fault, but once someone violates my trust, I cut them off. I can compromise, but begrudgingly. I have a hard time relating to other people, and, in my experience, when the friendship ends, I'm usually stumped. Normally, it's something I said or did not say. As I've grown older, I've become okay with this. Either people like me for who I am, or they can back off.

Autism means that I can see the details before I see the big picture. It's all the little pieces before the comprehensive idea.

Being an undiagnosed autistic for most of my life meant that I became used to role playing, putting on masks of how I thought people wanted me to be. I still do that, because it's become such a coping mechanism and it works really well. People usually think I'm "social," at work, and incredibly type-A personality. They don't see or hear the inner dialogue I have running through my head at all times.

Autism means my brain never really shuts off. I'll wake up at 3am, intent on solving a problem that won't happen for years.

Autism is... me.

me 






Tuesday, June 16, 2015

Today

**Editor's note: I began writing this a week ago, when emotions were raw, as they still are. This may contain some language that offends and surprises long time readers of mine. While I apologize, I also ask for you to regard the use of this language in the context that it is used. I'm hurting. It's that simple. 

Today, I don't want to accept the hand my son has been dealt. I want to rage and scream, cry and cuss.  I want to demand answers to questions I haven't even formed, and probably never will.

Don't mistake me; this isn't about autism. I've made my peace with that and moved along. I've embraced it, even. I admit the hard and love the mediocre and the great. This other thing, it's different and it hurts.

Today, I'm admitting that I would change my son in a heartbeat.

I would change those scores and words that say "significant cognitive impairment." I would make life easier for him.

I would give him steadier footing on the playing field of life, because this is all so damned unfair. I would jerk away the regression that's stealing so many of his skills, much like I jerk up weeds in a garden.

I'm not sure that I'm supposed to admit here, or anywhere, that I would change my son, or that I'm mad, hurt, or wishing for a miracle of sorts. However, today, I don't care.

This feels different than when he was diagnosed with autism. We were better prepared, perhaps, better researched, definitely. I've known he had a "borderline" cognitive range since he was first evaluated. I expected that score to go up, somehow. But now? There on paper, it's states he's intellectually challenged. And it hurts.

God help the person who calls him "retarded."

Tomorrow, or the next day, I will research until my fingers cramp from the effort. I will find out exactly what it means for someone to be below the 1st percentile in something. I will be proactive. I will acknowledge that this new diagnosis makes sense.

But today, I'm sad. My boy is a great human being and none of that is reflected on a score sheet. I'm scared for him and worry for his future. He wants to work in a train store, which I think he'd excel at, but how would he run a cash register if he can't do simple math any more?

Today, I'm going to vow to live in the present as much as possible because the future is just too frightening.

Today, I'm going to cry, pick myself up, and then, move along.