Friday, December 27, 2013

Hi, I'm Autistic

This week, I went to my doctor for some help with what I thought was adult ADHD. I listed these things as what I have continuous issues with in my life (as in, ongoing for years):
  • disorganized thoughts, except when I hyperfocus
  • extreme anxiety, then I seem to explode over little things- like a tidal wave rushing over me
  • sensory overload
  • verbal diarrhea (yes, I said that)
  • impulsivity with little thought to consequences, especially when upset
  • the feeling that gears are literally turning in my head when my thoughts are processing, putting information together; which makes it hard to always formulate coherent sentences
  • it's easier for me to write sometimes in a fluid manner than speak, unless I write down what I'm planning on saying
  • perservation on little or big things, which probably don't matter to other people. 
  • even at rest, I'm always moving
My doctor typed some stuff into her computer and asked some more questions. She worked with me for over an hour on case history, some of which was painful. I kept getting more nervous and I was doing this thing I always do when I'm nervous, where I rub the palms of my hands over the tops of my legs and pop my jaw, faster and faster. She observed this and then asked me, "Are you familiar with the terms autism or 'Aspergers?'" 

I laughed. I quickly pointed out that this term, Aspergers, has been removed from the DSM, which she acknowledged, but then she said, "You match all of the criteria for this... and that moving? Even while at rest? You know what that's called?" I had to laugh.

Hi, my name is Jessi and I'm an autistic adult.

I'm not sad, upset, or anything but relieved. I have a name for the way my brain is wired and why I seem to be different than other women I know.

Why I can't seem to shut up when there is a stream of information coming directly from my brain out of my mouth. Or why I don't always understand that people are bored with what I'm talking about.

Why, when I'm "prickly" and I'm upset, there seems to be a tidal wave of emotions rushing forward and I cannot stop them at all and I lash out and yell. Or cry. Or fall apart. Those are meltdowns. Bec explains them beautifully on her blog, Snagglebox

I now have a name other than just anxiety for why I have aversions to places, textures, and smells.

Maybe this is why I think of my brain like a computer system, where someone is trying to access files. Sometimes those files are corrupted, permanently open, or hidden.

I get now why I cannot interpret intent in situations sometimes and why people's actions genuinely confuse me. Why I can't let some things go- even years later, though I hold no ill will, I just remember them in detail. I think now I can understand why I only see the big picture or the little minute details, but never both. 

I've been rereading Mutha' Loving Autism's post on females with Aspergers this week and nodding my head, just like I did the first dozen times I read it. What she experienced in her head as a kid, at least on the surface, could have been me. We've also been chatting on the phone and comparing notes as moms, women, and women with autism. I've never had that much in common with another woman before (we had a whole discussion about the "right" weight and length of shirts), and I'm 31. I find this weird and really cool. I've had female friends and still do, but to talk to someone and compare notes about all the "weird stuff?" Amazing. And, it's not "weird," it's autism.

I've known that other people didn't think like me since I was a kid. I'm a very visual thinker (when someone says, "cuts like a knife" I actually picture a knife cutting something), but when I discovered others aren't, I was confused. So I kept quiet and mimed what I saw other people doing. I was a great mimic and still am. But being a mimic is very hard and incredibly draining. All I'm really interested in is being a great me, not a copied version of someone else. What kind of inauthentic example would I be setting for my sons with that?

I told the boys on Christmas Eve. Morgan thought it was cool that my brain works similarly to his. He thinks, he says, that this is why I'm kind and why I "get" him most of the time. Bay, on the other hand, teared up and said that I can't be autistic because I'm pretty. Ummm.... I whipped out my phone and immediately showed him pictures of women I know who are autistic. "Aren't they pretty? Remember, autism looks different in everyone, just as everyone looks different. Mommy's autism looks different in her than in Morgan. Looks have nothing to do with autism, baby." 

As for my husband? He thinks the doctor is 100% correct. He's been living with me for ten years now. He's seen me at my very worst and my best and loved me all the same. I believe him when he tells me I'm not crazy, as I've been insisting for years. I love him for insisting on making me believe that.

Knowing I'm autistic gives me a firm ground under my feet and removes the thought from my head that I'm some sort of freak. This diagnosis has made my own pieces fit together and given me clarity. It's not a huge deal, but it is.

I'm me. I'm a woman, a wife, a mother, a sister, a daughter, a writer, an artist, and I'm autistic.

I love being me.

Monday, December 23, 2013

Controlling Christmas Chaos - Autism Parenting Style

We've learned some things by now. This isn't a gift giving guide, nor is it a Bible for controlling behaviors, or anything along these lines. Rather, I thought I would share some of my limited wisdom on what has helped control the chaos (or not) during Christmastime.

pin me

Don't expect your child to be as thrilled about Christmas as you were as a kid- at first. It took us roughly five or six years for Morgan to "get" Christmas (i.e. toys!) and four to sit near Santa. We found that driving around, looking at lights, figuring out what Morgan truly loved about the season and then doing that over and over (repetition) helped. We also read one specific book each night during the season. Repetition is our friend here.

I might add, it took us a long time and this zealously decorating mom couldn't figure out why he wanted to hide or break half my Christmas stuff. Turns out, it freaked him out. Oh, and he hated the smell of cinnamon. Glad he likes it now.

I have friends whose kids are older and still not into Santa, the elves, or any of this Christmas hoopla. Adjust your settings accordingly.

Which brings me to another thing, perhaps to file away for next year... decorate slowly, if you have to. You're placing a tree in your home- you have a child who might not think this is acceptable because trees go outdoors. So, when the child undecorates said tree or wants to explore it, climb it, perhaps topple it and drag it outside, don't be surprised. Same goes for any other greenery. Go slow. Involve your kiddo in as much of the planning as he/she wants to be involved in. Don't spring a fully decorated house on him.

Things will end badly. Trust me.

A lot of cute Christmas crafts involve painting hands and feet. Aren't they adorable?! Not according to my son, who once ran screaming to the shower while holding one of the loaded paint brushes when I tried to get him to make a reindeer out of his hand and foot prints with brown and black paint. While I was balancing a baby on my hip. You know what brown and black paint look like, tracked across laminate and then cream colored carpet? Poop and dried blood.

Take into consideration that what you interpret to be cute, your child might equate to sensory Hell. Or creepy.

Ah, Christmas baking... so lovely, so traditional, so... smelly and sticky. Combine sensory with feeding issues and you, once again, have hell. Let your child play in the dough- if possible, but keep a window open or exhaust fan going. Otherwise, you might have the glorious experience or your kid echoing your "Well, shit!" for days after when you catch him throwing away your snickerdoodle cookie dough.

Holiday family gatherings are a level of Dante's Hell he forgot to write about, for both parents and autistic child. Just skip those or tell people to piss off if you have one of "those families." I have zero patience for "well meaning" advice on spankings, how the public education system is babysitting my child, or questions on when my kid is going to outgrow Thomas the Tank Engine. Better yet, having my second cousin twice removed tell me all about this autism cure she read about on the internet involving bleach enemas. However, bonus: big perk for family gatherings- using that sensory break! It works for you, too! But it's called a bathroom break, with a wineglass firmly in hand. Stay as long as you need, as long as your partner or someone you trust with your kid is keeping a watchful eye.

If you do go, make sure to set time limits- for everyone. If you're spending the night there... put the kids to bed and drink heavily, if possible. Don't take selfies and title them "home for the horrordays." Bonus if your family "gets" it all, is terrific, and drinks with you by the fire. Put them in the selfies.

On a serious note, don't forget about your NT kids. We try our hardest to make sure Bay gets to live it up during the holidays, too. This year, he's asked for specific things to do. Morgan wanted to try them because his brother wanted to do them. It was a success. Siblings rock, make sure they know that. Sometimes we have a habit of paying so much extra attention to our special needs child, that our other children can get swallowed up in the background noise. If you can, take only your NT kid shopping with you. Bay loves doing this and loves buying for his brother, even though it's train stuff and he hates every stick of train stuff. However, he's getting time to himself with a parent, usually a small treat, and feels important to be picking out his own purchases. We do small "dates" like this throughout the year, too.

Don't expect your autistic child to be as excited over his "big" gift(s) as you thought he would be. Just because he's not  having one be happy flappy fest, doesn't mean he's not happy. Likely as not, he's overwhelmed and trying to hold his crap together what with the other eight things that are being pushed at him. Don't make this about you or about him not enjoying something. Unless he says he hates it, or sets it on fire, assume he loves it.

I know it negates returning the item, but put the batteries in the whatever before you wrap it and give it to your child. A NT kid gets impatient waiting on batteries, okay? An overstimulated autistic kid waiting on batteries? Yeah... let's just not go down this road. And, if you're me, you're buying trains or something very specific. You're not returning a single effing thing you've tracked down on Amazon and Ebay. Don't kid yourself, darlin.

Most of all, reset any and all expectations of the holidays with your kids you had before you knew about autism. You will still have an amazing holiday experience, I promise. You just have to look at things from different angles, make several adjustments, and perhaps buy the same gift six years (or more) in a row. Christmas is about giving and family. It's also about the kids. Keep that in mind, always.

I hope that some of this helps you. What things have you found that have worked over the years?

Saturday, December 21, 2013

A Letter to Morgan's NT Friends

To my son's school friends,

Please don't ever change.

You, my dears, are the epitome of acceptance, kindness, compassion, and beyond.

You treat Morgan as if he is just like you. A kid. Because he is.

You seek to help him when he's over stimulated, sad, or when he wants to learn a new game, like four square. I hear that you even give him "second chances" for that game, though the other kids aren't allowed those.

If you're his work partner, you help him with the subject you're working on. I love hearing about that. Morgan tells me who helps him out in class and he always ends those discussions with, "he's/she's my friend and a very useful engine!" That's high praise, as you know.

You protect him from ridicule when I cannot. You make it abundantly clear that he isn't an object to be made fun of, but a friend to be loved.

When he stims or scripts, you don't look at him oddly. You don't judge him. You just accept and move on. But thanks for letting me know he scripts Family Guy at school.

Every time I walk down your halls, you run up to me for hugs and excitedly tell me if Morgan is having a great day. If his day isn't so great, you tell me how you're helping him or how the teacher(s) helped.

You don't shy away from his hugs, compliments, arm squeezes or funny sayings. This makes him comfortable around you. Him being comfortable has allowed him to really come out of his shell this year.

I love coming to eat lunch with all of you. That you ask respectful questions about Morgan and autism, and are genuinely interested, warms my heart. I love that you want to know why Morgan does things a certain way, scripts, stims, bounces, and is obsessed with Thomas. I love it even more that, when I explain it to you, I see seven or more heads bobbing as if to say, "this makes perfect sense."

You genuinely care about him, that's evident.

When "J" told me, "I think Morgan's brain is the coolest ever. You know, the way he can memorize stuff? He's the best at remembering spelling words and lines from movies," all I could think was "God bless you, kiddo. You get it."

When I saw him overstimulated last week after the performance, it worried me. That is, until I saw a group of you girls hugging his shoulders, talking in low voices to him, and running your hands through his hair. Morgan purred like a cat and thanked you. It was something I would have done and you girls have obviously seen his para or me calming him down in school and wanted to help your friend.

You girls spoil him rotten. I'm always finding little notes or treats from y'all in his backpack. Instead of thinking he's odd for dishing out compliments to you all of the time, you all say, "Aw! Thank you, Morgan!" and then tell me how polite and sweet he is.

I don't worry about sending Morgan to school every day like I used to. I don't worry about him getting bullied. He has you kids. You are part of his school team - the best part. While Morgan loves his grown up team, who are teaching him, you kids are the ones who are teaching him how to be a carefree kid and do typical kid things. I can't buy that kind of therapy.

Do you know how rare you kids really are? How many of us parents wish for kids like you for kids like mine? This reflects great parenting and a great school environment, but most importantly, a great heart and a wonderful mind. You don't have to go so far above and beyond common decency, and yet, you do it daily. How cool are you for that? Y'all are what I've always imagined social inclusion would look like.

One day, you're going to be grown ups. Don't ever lose the compassion you're showing for people like Morgan.

You will have other Morgans in your life, treat them just like you've treated him- with dignity, respect, and kindness. Be their friends always. The Morgans in this world needs the people like you if only for a friend... And you need them.

You kids are the best of the best. Thank you so much.

~Mrs. Jessi
Morgan's Mom

Friday, December 20, 2013

Glad Tidings for Us

As I watched Morgan sing loudly and off key in his Cajun Christmas performance, my heart swelled to the point of bursting. He's come so far. We've come so far.

I didn't need to sit by a door in case he freaked out. I wasn't disappointed in the teachers giving him the most minor role possible, for not challenging him, or for unwittingly setting him up for embarrassment. He wasn't the last kid up to the mike with a bit part...

He was Papa Noel and a great one. He counted so much in that performance. I could see his happy face from my seat in the front row, beaming like a beacon. His friends were looking to him when his cues/prompts came up. Not in judgement, but in gentle reminders and, when he got it right, they grinned.

I fought back tears and waves of anxiety as I walked back to his class for pictures of him. Had this been too much? Was this more my manifestation of fear than him being nervous?
The short answer? Yes. My anxiety. Though, granted, Morgan was nervous before performing. However, he was cutting up with his friend before the show. He was excited about the show. He'd been asking me about Papa Noel for days and breaking into the scripts for Boudreaux the magic crawfish. As a bonus, Ted, his kraken, was allowed to watch the show from the audience.

When I say that he's come a long way with holidays, I mean it. This year, Morgan needed almost zero prompting for Santa. Bay, actually, needed more. Morgan was a center of focus during his third grade performance and not just some afterthought. Both of us held it together on the nerves front- him better than me. He knows exactly how many "sleeps" until Christmas Eve, where two years ago he really didn't know or seem to care. He's watched holiday movies on a loop since Thanksgiving. And not just the same one. This is all progress, but not the "big" progress.

There are the crafty things... the coloring, the things involving concentration and fine motor skills. Things that, to be honest, I'd nearly given up on, I'm ashamed to say. Morgan gifted me with two gorgeous pieces of art today (last day of school), in a addition to his letter to Santa, which he dictated to his para, who wrote it down, so that he could copy it (see it here). I cried so hard. 

Morgan's art, to me, is worth framing and placing in a museum. I've waited a very long time for something like this from my son. It's fitting that all of this has come during Christmastime.

My favorite. 
This Christmas, I think my gifts came early from a very special little boy. It's like he knew what I secretly wanted, deep down in my heart and was afraid to ever ask or hope for. Some of these things are probably silly, but when you wait for something, or want to share an experience so badly... and then it happens, it's like a gift descending from a far off land. You don't know if it will happen again. You really don't care. You just cherish the moment and, if you're me, cry happy tears. 

Thursday, December 12, 2013

Unless You're One of Us

Lately, I've really noticed that, while I am able to be around moms who don't have kids on the spectrum or with other special needs, and there are some moms whom I really adore, I'm really just more comfortable around my own people. My tribe of people who I don't need to make excuses that might seem outlandish to if I'm running late or if I have "that look" in my eyes when I show up to something. Also, my bs tolerance has run out. The following sums it up nicely, I think. 

Unless you're one of us, the parent of an autistic child, you might not know how much it stings when you hear, "but it's 'normal' for a boy/girl that age to do x, y, z." Yes, it might be "normal," but in our world, our kids are not and that has been made quite to us clear from the get go. And some of your criteria for such as qualifiers for what flies as appropriate behavior is baffling to us. Our children don't do this stuff. Why are your children allowed to get away with it?

Unless you're one of us, you might never know the excitement of finding a member of your tribe who speaks in the same anagrams you do at the park, grocery store, school, or other place. You talk for the briefest of minutes, probably, maybe even only with your eyes as you're calming a child or saying, "Nice walking! Nice playing!" while other parents are looking at you, askance. You want to hug that other parent, but are afraid of looking like a stalker. Sometimes you even get a chance to be by yourselves, have a conversation, exchange numbers, and form friendships.

Unless you're one of us, you never know how much that means.

Unless you're one of us, you might never know the tears you feel when you take your younger child's art work out of the folder, so beautifully done, and exclaim over it... as you automatically think back to your autistic child's work which still, though beautiful, is hard to make out, or might just be a line on the paper. It's hard to be happy sometimes for one child when you know how much your other child is struggling or has struggled.

Unless you're one of us, you might never have been told by a well meaning friend or family, "Don't you ever think about you're 'healthy' child? And how he or she feels or wants?" Of course we do, and up yours, family and friends who aren't even here. All the time. Every day, minute, and hour. We stress ourselves out thinking about our neurotypical kids, too, and wonder if they'll grow up with complexes about their parents not lavishing enough love on them.

If you're not one of us, you may never know the type of rage that consumes us when we find out our child has been hurt by someone... and how that rage builds when the incident is brushed off as if to say, "your child doesn't mean anything more than this piece of dust in the corners of the ceiling." You don't just want to burn that bridge. You want to make sure the people responsible are standing on the bridge tied to it when it goes up in flames. That's the sort of rage I speak of. To have your child reduced to nothing more than a "I don't get it" or a label, a term, a less than... it's beyond hurtful. And how do you explain that sort of injustice to your child?

Unless you're one of us, you might not know how great the gush of joy feels when you see your child playing with another child. And then two. Then three. Then more. Some of us never experience that, because not all autistic children want to play with other children. But as neurotypical parents, seeing that wish come to life is nothing short of amazing.

Unless you're one of us, you might not know the kind of restraint it takes when some jack wagon tells you, "You shouldn't shelter your son so much. One day you'll die and then who will take care of him?" Yes, there are people like him in the world. I encounter them. Frequently.

Unless you're one of us, you might never know the kind of restraint you must have when you are asked - to your face - questions such as, "why should your autistic kid matter more than my normal kid and get these accommodations?" or "why are my tax dollars funding this program? My kid ain't retarded!" After all, you aren't supposed to commit assault. It's illegal. And messy.

Unless you're one of us, well, me, you'll never know how much I can't stop talking about autism, other special needs, special education and the lack of funding for it, IEPs, my kids, etc. I've lost the ability to speak about much else and I might be okay with it. Just because my son is autistic doesn't mean he should cease to be a topic of conversation. Autism should be allowed to be on the table for conversation, too, so should special education. Learn people, learn. Yes, I do other things. No, I can't remember what they are half the time. It's called life.

Unless you're someone like me, you'll never understand the amount of anxiety I have about my son's future. And how, no, I just can't let go and enjoy the moment because I'm always waiting for the next shoe to drop. You'll never know the dance I'm doing with destiny of three steps hard fought forward and life knocking us two back.

Unless you live it, breathe it, and love it every day and want to advocate for change, I likely won't want to be around you... you don't get it. It's okay, really. It's not always personal.

I just prefer to be around members of my tribe and those who accept us.