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.


Tuesday, November 26, 2013

Morgan's Friend Ted

*Editor's note: I am not being paid for this promotion. I am merely extolling the virtues of the wondrous creature that is Ted, who happens to have been made by a friend of mine. 

Morgan and Ted, Day 1
About a month or so ago, a delightful package came to Morgan and Bay from my friend, Karla, over at The Itsy Bitsy Spider Crochet . In it, there was two baby krakens, one blue and one red. The blue one was meant for Morgan, the red for Bay. Both boys were delighted.

Karla had made me a kraken about a month before and Morgan had immediately highjacked it as a stim toy. I wanted my own kraken, so I mentioned to her that I thought this would make an excellent stimmy for him. Hence, the birth of Ted as a stimmy prototype for Morgan. Bay received his (whose name at the moment is Christmas, it changes by the month) in order to not be left out. Karla is really lovely like that.

The boys take their krakens to school every day. Bay uses his during nap time and when he feels anxious. Morgan, however, has Ted on him as much as possible. We're talking on the playground at recess, during desk work time in class, and even on the field trip last week to the swamp (I brought Ted, I didn't want Morgan to lose him). Basically, unless it's to the bathroom, where Morgan goes, Ted goes.

Well loved Ted, today. 
Morgan loves Ted's tentacles. He slips his fingers through them and tugs on their tightly crocheted forms. He rubs his face on Ted's body. He twirls him, spins him, and talks to Ted as if Ted is real. Ted is his friend, he says. Morgan does this sort of purring sound when he rubs his face against Ted, it's pretty cool. It helps regulate his senses when he's anxious or upset. Ted is being well loved.

I wanted to mention that Ted was a great icebreaker for me with Morgan's classmates on the field trip. They wanted to know why he carries Ted around. I told them that Ted helps Morgan with sensory overload, to help keep him calm.  I also pointed out that several of them probably have loveys similar to Ted at home, which help them feel safe, but they don't bring them to school because, due to their brain wiring, they don't get as overwhelmed with things like Morgan does. They all seemed to understand.

I understand that stim toys aren't for every child, but Ted and Christmas (or whatever his name is) have been absolute godsends for my kids.  We, so far, have been through a lot of stim toys with Morgan. However, most of them have been similar in that Morgan must be able to squeeze them -hard- and they must serve several tactile purposes on the go. Ted serves all of those. I know that Morgan is going to be getting another Ted or two soon. I'm scared to death of losing this one.
Bay and Christmas, Day 1

Now, some information about the krakens, which I highly encourage everyone reading this to go check out. The krakens are made in amigurumi form and made very well. I've washed them multiple times in lingerie bags on the gentle cycle and they're actually stronger, I think.

Karla sells these through her Etsy shop, The Spider's Attic, and there are several different colors. These are the direct links to our versions here (red version) and here (blue version).

To whet your sensory appetite, she also offers Octavia the Octopus, who is lavender scented, and Oswald the Octopus, who is weighted. I'm really eyeballing Oswald.

Go check out Karla's shop and blog! She also has some killer crochet patterns at her other Etsy shop, The Itsy Bitsy Spider.

And remember, if you buy a kraken, you can teach your kiddo how to throw them while yelling (or signing) "Release the kraken!" It's really fun.

Friday, November 22, 2013

A Non Verbal Incident

Today, I did the overachieving mom thing and helping out at the school with the PTA. I helped out with something we do called "Snack Shack" where the kids can buy snacks super cheap. BOTH boys were really excited to see their mom at the school, both there and throughout the day (Morgan had a head's up, so he wasn't discombobulated seeing me).

While operating Snack Shack for the third grade, I observed Morgan in my line... he allowed a girl to line jump. No biggie, right? Well, he, in his mind, had just made a friend. Not so, apparently. He started to script to her his usual feed of "I'm Morgan ----, I have a mom, Jessi, a dad, Thomas, a brother, Bay, a dog, Roxy, etc, etc, etc." She rolled her eyes at him and looked at her friends and giggled. Okay... Then, as he talked, she kept. doing. it. She curled her lip. Any neurotypical kid would have picked up on her facial expression, but Morgan's not neurotypical.

I observed.

As Morgan spoke, she kept looking at him then to her friend in unspoken communication as if to say, "Can you BELIEVE this kid?!" The eye rolling, the staring, the non verbal slights continued.

She didn't know him. She clearly did not know I was his mom- a lot of the kids at the school know who I am. Morgan had not recognized me yet, though I was standing five feet away from him. As I watched, and hurt for my son, who didn't realize the non verbal jabs being volleyed his way, I kept doing my job of handing out snacks.

 Usually, I'm looking for the nonverbal communication from him, or listening for the meaning to the scripts. It dawned on me that nonverbal communication was being used against my autistic son. Irony abounds.

I finally heard, "Hi Mommy!" as he recognized me. The little girl didn't look ashamed or even aware that she had done anything wrong. I helped her make her choice quietly. I did, however, mention it to her friend told her, "He's autistic. He's a nice boy. What y'all just did is wrong. He was trying to make friends and you ignored him and, worse, made fun of him." The little girl didn't realize that what had happened was wrong.

I was stumped.

I told a teacher who had been out there what had happened and was assured that the incident would be reported and taken care of. If nothing else, I wanted that little girl to know that the boy who had been trying to speak to her was trying hard to be a friend. And, even though she didn't have to befriend him, there was no need for that kind of behavior. Period.

On my way back to the PTA area, I passed Morgan eating his snack. I bent down and told him to stay away from that little girl. I said, "Look, buddy, you don't know it, but you were just made fun of. She's not a friend. She's not a bully. But she might be someone for you to stay away from. Okay?"

The staff and teachers made sure that the problem was resolved. The little girl was made to apologize and understand what she did was wrong. Morgan's teacher assured me it was handled well, by her and others.

It's made me think hard this evening about non verbal communication and facial cues/recognition that Morgan still doesn't understand. He didn't even recognize me until he was about a foot and a half away. That part scares me, still. But then, so does him not recognizing when someone is wanting him to go away or shut up just by their facial expressions. And trying to teach it feels like trying to teach him speech intonations, but not really.

That short incident reminded me a lot of an incident from this summer, but it was covert. So, so very covert. And the girls didn't seem to understand that what they had done was wrong.

As his mom, it felt awful to watch. However, as someone who has seen much worse, it was interesting to see school/child politics. Morgan was being, well... Morgan. He was doing what we've all taught him to do- be friendly, be polite, and try to make friends. But it backfired on him and yet, he was oblivious to it all. How many times a day or week does this happen and the paras and teachers who carefully watch him don't notice? They cannot be everywhere at once. The teacher who was standing a few feet away today didn't even see that incident. And Morgan didn't notice anything had happened.

Should I have kept my mouth shut? I don't know.

I just know that it was hard seeing that today as his mom.

Tuesday, November 19, 2013

Road to Acceptance

A friend, another autism mom, asked me recently when did I finally accept Morgan as autistic? Where did my acceptance of autism begin? This was in a chat, so my friend could not see my grimace or hear my chuckle.

The truth is, though I write about, preach, and fully believe in autism acceptance, there are some days that I wish that I could wish it away. Not Morgan, but some of his autism. Even though I say I cannot separate the two, sometimes I wish I could.

Like most parents who see their children struggle, or who have been through the wringer, I wouldn't wish that kind of emotional turmoil on anyone. I wouldn't wish for any person to have SIBs, to feel alone or different, or be told by society that he's wrong for how he's made.

However, this is how my son is made. And, frankly, I think society is wrong, not my son.

That being said, I accepted autism and accepted Morgan as autistic because there was no changing him anymore than there would be to change his laugh or his eye color. It took me a long time to get here and there are times when I am still not sure how solid the acceptance floor is underneath my feet.

Acceptance just seemed easier than fighting it, I told her. Morgan is Morgan and that is perfectly fine. I don't want to fix him; I want him to thrive, however that may be. At it's core, there should be nothing wrong with being autistic. It just is. 

To me, as an autism parent, acceptance is loving your autistic child so unconditionally that you don't want to change them, you just want to help them be the best "autistic them" they can be so that they can thrive. And also, so that you can thrive as their parent. If you're fighting against something as if it were a war, how is it helping your child?

I've been told, at times, that I speak from a position of privilege because my child isn't like other autistic children. My child isn't nonverbal. He is in an inclusion class with supports. He interacts in his own way with people. People don't see his autism at all times, at least, not right away. To that, I say check your own privilege. I speak as a mom who has been on both sides and has been scared as hell that her son would never speak, write, or interact- among other things. And I also know that none of these things are important qualifiers for acceptance of your child.

There are other parents out there like me, I know, who waver in their positions on acceptance. Who, on the roughest days, want to wish autism away, even though we know we can't and we know that it would be wrong to want to change the very wiring of our children. We know that we only wish for it to allow our children an easier life.

As humans and as parents, we're fallible and are going to miss a few steps along the road to acceptance. I think that's natural. Accepting my son as autistic means that I accept his quirks, stims, learning disorders, and I try to work with all of them. I don't fight any of them. Well, I try not to. I'm human and, as I stated, I make mistakes.

While I struggle with acceptance in all its forms, I don't struggle with accepting Morgan as an autistic person. However, I do struggle when I see him struggle. That's what I want to fix- his struggles.

How about you with your child?

Sunday, November 17, 2013

Our Autism #thisisautism

This is our autism.

Our family who loves our autistic child deeply. Who, if given the chance, would change the world before changing him.

A nine year old boy, big for his age, happy as a lark, laying in the middle of his self created Island of Sodor, happily scripting stories from the Thomas the Tank Engine series. His little brother looks on, frustrated that his big brother is taking up floor space, but I gently remind him that it's Morgan's turn to to play on the floor, so play along, or play with his Legos.

Our family taking trips into "the big city" to walk the streets in the French Quarter, someones hand tightly gripping Morgan's, anothers hand on Bay's, while all of us dance to the strains of jazz playing somewhere. Autism doesn't hold us back. Morgan loves our city and has taught us to find the details we might have missed otherwise. We notice and celebrate the beauty in the ordinary, whether it's cracks in hundreds of years old sidewalks or drain spouts shaped like fish mouths.

A boy who has brought more joy than pain to our lives. Who once was hard to understand, but once we learned his language, welcomed us into his world off scripts... all we had to do was learn them. Who loves with his mind, body, and soul. Who has the greatest belly laugh ever. Who tells all women that they are "beautiful, like a rose." Who will be your friend.

Our autism looks like a family with a child who hums, chugs, sings, bounces, and flaps. Who sometimes needs fidgets or earplugs, or even sensory breaks. He also sometimes announces whatever is on his mind right this instant. Sometimes we get funny looks or even questions, and I am glad to explain because autism is nothing to be ashamed of, but to be educated about. When we get the harsh criticisms or stares, I politely give people the finger- that's our autism.

Our ideas of autism, acceptance, and our coping mechanisms have grown with Morgan and the amount of community we have discovered.

I used to think that autism was a "bad" thing, because that was what I was taught. I now know that you can be autistic and have a full life.

You can be autistic and be married.

You can be autistic and have kids.

You can be autistic and be happy. 

I learned that last one from Morgan, my son.

He is our autism.

If It Makes Him Happy

I know I've written and joked a lot about wanted to burn all the things Thomas the Tank Engine related. Some days, I really do feel that way. But I don't stop my son, Morgan, from having what he loves or playing with those trains because they make him happy.

Last year, I wrote about how, one year, there were no Thomas' under the tree. Morgan freaked when he finally realized that what he'd asked for (a litany of engines) weren't going to pop up. Mom foul on my part. I was selfish and wanted a Thomas-free Christmas. I was thinking about my comfort level, not his. I was following the "Age+" and allowing it to bother me.

I wasn't thinking about how much Morgan lights up whenever he plays with his trains. Or how he can calm down when he's scripting a story.

This year, I'm being firm with people, I'm letting them know that it's Thomas or nothing- unless the boy states otherwise. Not much else interests my kid. A few people aren't very understanding, but I could care less. This holiday isn't about them- it's about the kids, and one of the kids is my son. What makes him happy is Thomas.

Besides, why waste money on something which Morgan won't play with?

That's what I always go back to. You know, if you're uncomfortable with this, send a gift card. What this autistic person in your life loves is Thomas the Tank Engine. It makes him happy, very happy. And if something brings that much joy to one kid, it can't be bad, no matter what the "age +" says on the box.

Yes, my home is beginning to resemble the Island of Sodor, but Morgan's happy. Isn't that the goal of raising a kid? Allowing them to be happy?

If you're reading this as someone who loves an autistic child, remember that, in our world, age appropriate is something mandated by parenting books or toy manufacturers who don't understand our kids. Brush that concept aside. We're only concerned about our kids being happy. They deserve that, especially during the holidays. All kids deserve happiness during the holidays.

Tuesday, November 12, 2013

Autism Speaks isn't Speaking for Us

Suzanne Wright, the co-founder of Autism Speaks, released a letter yesterday as a "call to action" for the nation. For the government to set both educational and insurance standards for autism. I actually take very little issue with this.

What I do take issue with, however, are the allegations Mrs. Wright made in her letter as to how autistic families live, eat, and breathe. That wasn't my autism, all the time.

This is Morgan, my nine year old autistic son. He is in an inclusion class in the third grade and, thanks to determination on his and several other people's parts, is doing very well. He stims, he scripts, but he is happy. He struggles, he doesn't understand quite a bit of things, and, yes, we deal with SIBs, but overall- he is happy. 

He is also toilet trained, able to dress himself independently, and knows how to make toast.

This is our autism. 

"Those families are not living."

My family lives- fully, thank you very much. We choose to go on trips, adventures, teach our children, and live life as fully as possible. Don't slap a functioning label on Morgan because we aren't able to do this. His label has changed since autism first became apparent. And functioning labels are, frankly, irrelevant to how a family might be able to live.

You choose how you see your life. Attitude is everything. So is your support network and and I understand those might be hard to come by, that's why social media has become so important to so many.

"These families are existing."

Aren't all families? Lady, we are living in a godawful economy. In this family, we are worried about medical bills which aren't even my son's. We are stretched thin. But we make it work because we have each other.

Morgan is my autism. Our autism. He has changed so much since his diagnosis. He has changed so much since that word was first uttered at the age of three to us, when he was nonverbal.

Our autism is a gentle giant of nine year kid who is finally playing wall ball at school. Who is now one of the most popular kids in the third grade because he's that sweet at school. Yes, we have aggression issues at home. However, I can't focus on those because that will tear me apart and it's not representative of my son's being.

I try very hard on this blog to be respectful of my son and family. I try to be respectful to autistics in general. What was in that "call to action" was not respectful in any shape, form, or fashion.

Yes, things need to change. Yes, there needs to be a call to action. I fully agree with that.

 First things first- Autism Speaks needs to learn that Autistics can speak- loudly, even if they must use devices. My son is one of them. And Autistics hear. My son is one of those, too. Perhaps that isn't the autism that Autism Speaks wants people to believe in, but this is the autism I will continue to write about. This is my autism.

Autism isn't a death sentence. Get that through your heads, Autism Speaks. You aren't speaking for anyone except for those who want to buy into fear mongering.

Friday, November 8, 2013

Excuse Me

I'm afraid that I wasn't clear with my post yesterday. That wasn't meant to be an incredibly negative post, believe it or not. I'm usually not a negative person, but a "strong" person. Or, so I'm told. I'm not sure if I believe that.

I was told that what I'm jokingly referring to as "Facebook Island" is self preservation. What I didn't delve into are all of the other reasons I set up that account.  The reasons that really don't have a thing to do with neurotypicality, other people's lives so much, or what is being deemed by some as pure negativity.

For the wonderful outpouring of support I received on my pages yesterday- thank you. 

One woman wrote me a message, which, in the beginning, summed up my current feelings perfectly: "I don't know you or your life..."

That is at the crux of how I feel for the people who want to call me negative. Who want to say that I need to put on a positive spin because "sometimes life sucks." Yes, life sucks sometimes, but what happens when you feel like you're at the end of your rope or beyond and it has nothing to do with an autism journey?

I was criticized for deactivating my personal Facebook page by people who don't know my life, but think that they do. I was judged unfairly.

Let me break this down... I've been on medication for the last two weeks to shrink my endometriosis, it's called Megace. I've talked about it on my Deciphering Morgan page. I mentioned it making me "nuttier than a fruitcake" in yesterday's post.

It's a drug which was supposed to shrink the endo in my body. It's also a drug which is used to treat cancer of the breast or uterus (i.e. tumors). I was taking it three times a day. 90 pills in three weeks is what I was supposed to take.  Until I couldn't take the side effects any longer. Click the hyperlink on the name, it gives you the lovely list of those.

What I left out is how bad the side effects have been for me. How I've been muscling through as best as I can, but I can't any longer. How I've now had to come off of those potential surgery avoiding drugs because of the fact that they were causing me to be incredibly fatigued, swell horribly to the point of more pain, and, the have uncontrollable massive anxiety attacks and the worst suicidal thoughts which even my anti anxiety drugs could not touch. How the pain was made worse, but I've just had to learn to live with it.

How that's the reason, in addition to so many others, I had to retreat from "full Facebook" for one week- and it didn't even last that long. Just one. I neglected to mention this because it's no one's damned business but my own. However, I figure that if one woman reading this is investigating it versus another drug or surgery for endo, she needs to know what it can do. Enough women have messaged me in the past two months about drug or other medical treatments for endo; this could be valuable information.

I've retreated from my friends and even family because I don't want them to see or know me like this. I don't want to be that asshole from the Giving Tree who kept taking until there was nothing left to take. Plus, there's that whole crying thing I've been doing in the last week and a half. Who wants that?

I prefer to be proactive enough about my life to know when my mental health isn't good and get help. Take a bit of a social media break. Find a happy place. Find an outlet. Hug my kids. Know what's worth living for.

But no, that's wrong.

This isn't "leaving anyone out of my journey," this is self-preservation and knowing when enough is enough and being afraid of even harsher judgement.

At the end of the day, I know where my positives are- my children, my husband, and my real friends. You know, my support network?

Sometimes, it's necessary to talk about things which are not pretty or uplifting. Kicking people when they are down is probably the lowest form of inhumanity I know. It does not move you higher up some imagined social media ladder- it only makes you look like a thoughtless jerk.

Everyone is going through their own journey. Some share it with a mediocum of grace, others do not know how. Choose your category.

Excuse me for telling my truth.

Thursday, November 7, 2013

It's Not You, It's Me- Sort Of

*Earlier this week, I deactivated my main personal Facebook account. I'm running my Deciphering Morgan page through another account I set up for autism only people and people that "get it." I'm not as active on that profile. Thus far, I'm not in any of my private groups, I haven't liked but a few pages and I think I'll keep it this way for a while. 

I'm on Facebook Island. It's completely selfish.

Judging from the pm's I'm getting from old friends on my DM page, some people think I might either be (a) dead or (b) mad at them.

I'm not either. I'm just in need of a break from neurotypical bliss and from first world neurotypical problems, among other things which I'm not at liberty to talk about here.

I'm being selfish and I'm not even apologizing for it. I should have done another profile years ago.

No offense, but I could give a crap about what paint color you're choosing or what little Becky did which is certifying her as a MENSA candidate this week. Harsh? Yes. Honest? Oh God, yes. Sometimes I feel like screaming, "I wish my first word problems were as mild as yours!!!"

It's hard, for me, as the mom of an autistic boy, to see pictures of kids that Morgan used to go to school with or play with when he was really young doing things that he can't do because homework takes up so much extra time. Or because we don't know how he'd do and honestly can't afford to figure it out. Or just being given the chance to be a kid with other kids outside of school. You know, play dates?  Or when they're doing things which aren't Thomas related. I love that my kid has a passion, but I wouldn't mind if he would also love to talk about something other than those trains.

It stabs when I see pictures of kids younger than Morgan on bikes without training wheels. Which, other than the adult trike he test drove once, he's never ever been able to do.

Or, when someone posts a pic of their son who used to attend school with Morgan having a sleepover, or a friend over. I'm not saying that Morgan doesn't have friends over ever, but the main friend he does have over who "gets it" is about to move an hour away.

"But Jessi, you're also the parent of a neurotypical kid, doesn't he matter?"

Yes, he does.  He matters just as much as Morgan.

Thus, I'm caught in two worlds. Every time I open Bay's notebook from kindy, I have this funny stab in my heart because his handwriting, that emerging skill, is neater in some ways than his brother, who is three years older than him. His coloring is better than Morgan's. Give that kid a paper and glue project and he nails it in a way that, due to a lack of fine motor skills, Morgan cannot right now.

Bay told me the other night that he's afraid of being smarter than Morgan one day. That he's afraid his brother will hate him. And that he wants to stop school because of that.

Except I think that Bay is sad sometimes at school. He says (and this is confirmed by a couple of the support staff at school), that no one really plays with him at recess. So I'm worried, as his mom.

I feel like it's Groundhog Day, where I'm trying to "teach" social skills to a child in order for him to make friends, although Bay's been on about a hundred play dates.

You're never supposed to compare children, whether they're your own or yours to someone else's. But I do it and it kills me.

I'm not bitter or mourning a life I've never had. I'm just, for right now, choosing to ignore the lives that aren't mine.

And, really, did you want me to be watching for signs of autism in your baby/home videos? Because I was, I really was. That's what we autism parents do, you know, we watch for signs of one of our own. Mention that your child has a an "obsession," and we're on that like hotcakes. Post pictures of a kid lining things up? Yep, we're talking about it.

So you see, it's not so much me... it's you. I'm being a bigot right now in that I can't be around anyone but those who have autism or other disabilities in their lives, even though I'm not saying much when compared to how much I normally say. I also was afraid of offending people, for a change. I don't want to do that.

I know it's understood, but I feel the need to clarify. You cannot help that you have neurotypical only kids any more than I can help that I've been blessed with an autistic child and a neurotypical child.

For now, I'm staying on Facebook Island. At least until I'm done taking Megace and this crap stops making me nuttier than a Christmas fruitcake.

Sunday, November 3, 2013

All Autism, All of the Time

If you're autistic, or the parent an autistic child, you'll likely understand exactly what I'm about to say. If you're an autism blogger, like me, you'll understand this even more.

My life is all autism, all the time. There is not a single second, minute, or hour of any day that is not dedicated to me thinking about it. I rabidly read about it. I will discuss it with anyone, willing or not. "Once you tell one person, and then they tell one person, and so on, and so on..."

People in my life, without autism or not 
touched by it, 
don't get it. 

Why would they? Most of my closest friends get it- probably because I've hijacked them onto the autism train. I've force fed them the information, they know Morgan and other people who are autistic, or they are willing to listen. I also have a great group of autism parents where we live, many of whom are strong advocates.

If someone calls me in the middle of the day, they are highly likely to hear my keyboard clacking. This is because I'm either writing a post about autism, private messaging a mom or dad about autism, or (rarely, but it's becoming more frequent) giving a quote about how autism has changed my life. I don't feel as if I can tell the caller that I can't talk because I want to talk to them, but I am also not willing to tell the person I'm pm'ing that I'll get back to them. I'm too afraid of what I won't come back to.

Those private messages, more often than not, are a lifeline (I'm told) to a parent in need. Sometimes it's something as simple as a question about an Individualized Education Plan (IEP). There have been multiple instances where I'm talking a parent back off of a ledge or cliff when they've had to consider hospitalizing their child and they feel as if they are now (the parent) suicidal.  No one needs to feel alone and in the dark. This is a service that I provide free of charge and am happy to do so. I also discuss SIBs (Self Injurious Behaviors), aggression, and several other things that these parents aren't comfortable having posted onto my blog's Facebook wall or in any other place due to identifiers.

My life is not understood by many, how could it be? I'm not getting paid for any of this, but I'm thrilled to do it. If I can help as many people as possible, then I'm happy to do it. I've been in these parents' places too many times to count without an outlet. Everyone needs help without judgement. If I cannot help them, I research the right places which could.

There is no escaping autism. 
Autism is your child and your child is your life. 
You never give up on either.

Autism is my child. My life. And while it isn't a bad life, it's an all encompassing life. It is what it is. If you can't handle me talking about it, don't write, call, or visit. Just don't interact with me at all. Don't tell me you want to understand and then chide me for explaining, because then you're going to get a big "Piss off" from me.

For those that say, "Shut it off. Take a break. Enjoy your family." Allow me this:

You think I don't already do that? I do shut off my computer, but I keep my phone on me in order to refer out that parent who might be on that edge of desperation.

Take a break? What the actual hell is that?

Enjoy my family? Every. Damn. Day.

For those that don't get why I'm so tired at times (all the time), here's a small breakdown: here lately, Morgan has had some trouble sleeping. His SIBs, outside of school, due to the environment at home (read: my health issues) are a bit high. We're having some aggression issues at times- at home. Morgan's had a few anxiety attacks at school. I'm also hyper focused on Bay and how he deals with all of this because he's five and I need to split my time equally, which never happens. I worry all the damned time. He's part of the autism family, too. And sometimes, he doesn't deal well with it all. He's high anxiety sometimes, which is hard. However, Bay's in an inclusion class at school and it's helped him learn soothing techniques for his brother. So, he too, is all autism, all of the time. But he doesn't seem to begrudge it any more than I or his father do.

I'm probably, when you ask how things are going, to tell you about those things, or rattle off some incoherent bullshit. Because that's what's going on in my life. And, frankly, I could give a shit about your Pampered Chef party, although it sounds cool. But I'm not tuning you out... I'm waiting for the other fucking shoe to drop.

When you call an autism mom, be prepared for her to be tired and to be half listening. Sometimes we're juggling 1,000 things at once and preparing for the school to call at any minute and for the special alarm ringtone for the school to go off. I know I am.

If you can't handle any of this, then don't bother trying to join in. Autism, especially parenting an autistic child, is a "jumping in head first" method of parenting and I'm one of those parents who not only jumped, but dove. 

I live it, eat it, breathe it, and write it. 

Autism is him. Autism is us. 

Friday, November 1, 2013

And Now, A Rant About Jack Wagons

Perhaps you're one of them or know them- in real life or online. These are the people our parents warned us about.

They always "know" more than you. They always want to "correct" you- it doesn't matter the subject. They're usually wrong (because I said so). They back up this "knowledge" with "I have a degree in ---" though evidence of the knowledge obtained via that degree is clearly not showing. If you post something well meaning, they have a negative response to it, no matter how well meaning the subject matter. They don't have the sense God gave a lemon when it comes to keeping their ever lovin' mouths or keyboards shut.

Basically, I'm speaking of the grown up assholes of the world. The "educated," or even uneducated jack wagons. The ones who wouldn't know good sense, etiquette, and a dictionary if you threw it at them.

You know, why are people like this? Why?

I understand debate. I understand differing opinions. I get that. However, why jump on something which isn't begging for your opinion, your "two cents?" Especially if you can't articulate it? Scroll past, trolls and other people!

This extends to politics, special needs, education, opinions on vaccinations (why the need for insults on either side?), diet, exercise, lifestyles, etc. If you disagree with someone, there are ways to do so respectfully.

I'm perfectly guilty of being imperfect. I've written about, posted about it, and spoken about it many times. I'm guilty of being a complete asshole on threads. However, if someone is in my "friends" list, I'm blunt when I disagree and will actually take the time to articulate why I disagree and state, "I'm sorry, but I think I will have to agree to disagree." I usually, however, hide the person's posts or scroll right past said posts. I'm not sure why other people don't do this. *Please note, I did tell someone, who made inaccurate observations about my "charmed life as a stay at home mom" and also, a racist comment, last week, "F**k off. You don't know me or my life. Go eat a bag of d**ks." So, yeah...

I'm doing a bit of fall cleaning right now. I've even considered taking a social media break- which likely won't happen. The cleaning, though, that will happen. Too many people piss me off on a regular basis in both the blogging world and otherwise. I'm sorry, but my tolerance for bullshit this year has reached its limit.

I have more important things to do, write about, and focus on than the jack wagons in this world.

Should you find yourself in the same predicament as I, do a thorough cleaning. Not just on Facebook, but take a hard look at who matters in your life. Do they bring as much to the table as you do? Would  you drop everything for them in a time of need and vice versa? Are they toxic for you? Are you possibly toxic for them?

Bottom line: No one has time for oxygen thieves and people who are about as much fun as a bucket of mad assholes.

Wednesday, October 30, 2013

He Is Them

My husband and I were lunching at a little cafe in our downtown. As we were waiting in line, we noticed that the group in front of us had kids a little older than Morgan. We instantly recognized those kids as belonging to our son's tribe of people- they were autistic.

They were out with their aides after coming from an anti drug rally and were from the school Morgan is zoned for next. He won't be going there, but that's beside the point. We struck up a conversation, as I always do when autism is present- I can't help it. The paras were responsible, it turned out for the "severely impacted and verbal to moderately autistic and verbal or wheelchair bound" kids. They asked if Morgan was verbal, which always baffles me- being verbose gives no indication of a so called functioning label. But I digress...

The aides were helping the kids learn life skills by ordering for themselves, paying for their food, and tipping the servers. They were displaying good behaviors, I thought, but yes, they were displaying "typical autistic" behaviors. Hence, Thomas and I recognizing members of our son's tribe. You could say that our A-dar was on high alert. We were very happy to see these children (fifth and sixth graders) out in the community with their lovely aides being taken care of and, most importantly, being treated with love, respect, and dignity as they demonstrated the life skills they were clearly learning.

We placed our order and sat down in the front. I could hear the lively group in the back, their paras redirecting them with table manners; everyone seemed to be having a nice time.

Some women sitting behind me were gossiping about that awful letter making the rounds about the lady who intends on "educating obese children." I let it drop that I'm an autism blogger and all of my friends and I were super hot about it as well. If someone were to give my large kid that note? Oh honey. We all nodded.

Lunch finished up, Thomas went to refill our cups... and then "it" happened.

Our server came by to bus our table and for whatever reason, thought it was okay to say to me, "Shew! Just watching them kids made me tired! Can you imagine dealing with something like that e'ryday?!"

I looked at her levelly as I stood up and answered, "Yes. Yes I can. My son is one of those kids. I live with that wonderful life every day. He is them. And I can't ever  imagine saying something like that to someone like me or anyone else..."

She scooted off, shocked into silence. I turned to pick up my purse and saw the group of ladies at the table behind me and realized they'd heard every word. They were all grinning at me. I'm supposing I said the right thing, for once.

My point in telling you this is that those people are just that- people. They were out in the community, at a cafe whose business depends on everyone patronizing it, including autistic people and their paras or parents. How dare someone remark to a perfect stranger something like that? And in that tone, that language? As if that is not an okay way of being?

And guess what? Autism is everywhere. So, be prepared for it. Don't ever assume it's okay to crack a joke or make a comment to a random stranger about a group of autistic kids. You never know if the stranger you're laughing to is the proud mom of an autistic kid who will willingly write a letter to editor of your city's paper about your cafe.

This life isn't easy by any means. But God, it's worth it- he is worth it. My son, and every single person who shares his diagnosis or some other "different ability" deserves the respect to not be fodder for gossip or a joke.

So, thank you, server lady, for once again giving me the drive to write about social injustice. Here I was, getting complacent about acceptance and thinking that it wasn't a problem in our little community. I guess I was mistaken.

Friday, October 25, 2013

The Permissive Culture Behind Bullying

Nothing licks the red off my lollipop faster than a meme or status saying things like, "We will never be able to stop bullying" or "Teach kids to fight back, anti bullying laws are creating a nation of victims."

Perhaps this is because I'm a special needs parent and those zero tolerance, anti bullying laws, protect my child and thousands just like him.

Let's get some things straight, shall we?

Bullying is first taught at home. The culture of bullying is then further propagated by people who look the other way or even encourage it. You might say you aren't one of "those" parents or people, but honey, trust me, you are. It is highly likely that you're telling your child, "That weird kid is just that- weird." You're teaching your child, without ever know about the kid who your child is bullying that it is okay to make fun of or even beat up that other kid.

Don't think so? Allow me to demonstrate.

Morgan was bullied pretty severely in first grade. Not just verbally, but physically. This was an ongoing issue throughout the entire first semester and part of the second. At one point, he had his ass thoroughly kicked by two boys, gravel shoved in his mouth, and was told he was retarded. A third boy watched for teachers. Two of the boys, the ones who were caught, were suspended from recess for two days, if memory serves.

I requested a conference with the parents. It was denied by them. No one wanted to be told that their little darling had beaten up a special needs kid.

Another time, Morgan got into the car, smelling of urine. I thought he'd had an accident and I had not been notified, which was odd. It wasn't until another mom told me that her child had been peed on that I thought to ask Morgan if the same thing had happened to him. He answered in the affirmative. I was livid.

A little boy spit on Morgan in music class. Now, that raised some eyebrows because there were so many witnesses.

Throughout the semester, Morgan kept coming home with bruises- deep tissue bruises, all unexplained except that he was "clumsy." He kept telling me that "those boys" or "that boy with the red coat" were punching him or jabbing him in the halls on the way to class. I asked if he'd told a teacher, which I knew he had. Apparently, since he wasn't very articulate, no one, aside from his wonderful homeroom teacher, believed him. And so, I raised hell.

This kept going on, despite me raising hell. And believe me, there was a lot of hell raised.

A lesson on genies came up. I asked Morgan one night, if he had three wishes, what would he wish for? "Not getting picked on, walking to class and not getting tripped, or hit, or punched and biffed into the wall, and no one making fun of me."

I'd had it. I called the principal and demanded she actually speak to me, but not before I raised more hell at the school with her vice principal. I asked her to put herself in my shoes, as a parent. How would she react? And would she define any of this as assault instead of bullying? Because I damn sure was.

I also offered to press charges against the school. There were plenty of grounds for me to go on.

Suddenly, Morgan was happy. I asked why? He said that the bullying had stopped. No one was calling him names. The bruises stopped come home. The nightmares didn't stop, but the real nightmares, the ones from the daytime, did.

Now, after reading this, how would you respond as a parent? That school had a zero tolerance stance on bullying. I wasn't the only parent jumping down throats. I was told the only thing that had happened to my son which could be deemed true assault was him being spit on. What a laugh.

If you have been the "me" in this case, know your child's rights and keep raising hell. Don't stop. Schools can be held liable for this, and so can the other parents.

So, yes, perhaps we are creating a culture of victims. However, the some of the victims are the actual bullies because their parents are teaching them that this is okay. Whether they state that emphatically or not, the permissive air is still there. They might think that they aren't doing this, but how many times have they made fun of someone in front of their child? Or said, "just kick his ass!"

Do me a favor, if your child is ever accused of bullying another child, don't shirk your moral obligation as a parent and human being and turn down a requested conference with that other parent.

Your kid could have bullied my kid. Or one just like him.

*As a side note, I found out, right before we moved, that the "boy with the red coat" was my neighbor. He came over to my neighbor's yard one day when we were all playing soccer. Morgan froze. He whispered to me, as I asked him what was wrong, "That's the boy with the red coat, Mommy." 

The father of that boy and I struck up a conversation. I mentioned to him how badly Morgan had been bullied (he was standing under our tree, trying to make himself small). I told the dad how unfortunate it was that I had repeatedly requested a conference with the other child's parents and how they had refused.  I also said that I would love to have a word, outside of school, with that child's parents and explain to them that Morgan's autistic and how those repeated instances of being beaten up had traumatized him. How I wished that the other parents could see that my son wouldn't hurt a fly. How he's a great kid and never deserved this. How, as his mom, I wanted to press assault charges, but understood that the "yellow haired boy with the red coat" likely just came from a bad home and "isn't it a shame when parents don't take responsibility for the way their child acts?" That father grabbed his kid right then and there and said, "boy, we need to talk." I never saw him again. But I think he grasped the concept.

Wednesday, October 16, 2013

Fearing the Future

*Editor's note: Please allow me the opportunity to have some word vomit due to anxiety.

Morgan will be nine this weekend. I'm kind of shocked by that.

Most of me is surprised that this much time has flown by so quickly and there is a big part of me who is scared that the rest of the time will do the same. I'm not ready for him to grow up and yet, I don't want to keep him a child. I want to push him to grow, learn, accomplish, and "be."

My brain is swirling - joyfully with what the future will hold and terrified of what it won't.

Every time I think of an experience that I think he should have and has not and might never, I check myself because I know that projecting this way is wrong.  It carries the potential to harm us both. But I still do it at times because I'm apparently a glutton for punishing myself and my son in my own brain in my most anxious hours.

My son's future was never mine to force onto him or autism's to steal. It is not predetermined by anything but Fate. You can help Fate along, but you cannot force it. Believing that has been my road to autism acceptance and me fully embracing my son as an autistic person to be understood, not someone to be fixed.

I feel as if the future is full of the things which we, as parents of children with special needs, aren't allowed to broach in our thoughts. Because once we do, it's as if we've tossed gasoline onto a pyre of fear and anxiety.

He's halfway to being a legal adult, being of voting age, and being old enough to sign up to fight for his country- though he would likely be disqualified due to his autism diagnosis. That's where my mind takes me when I think of 18 and beyond.

Will he be ready?

 Will I have him ready?

I think of things I did at certain ages and wonder if Morgan will do them, too.

Will he date? Have a job? Will he go to prom? College? Live on his own? Get married?

No... I can't think that far ahead. I just cannot. I try not to think too far ahead into the future because that's too shaky of ground, too unstable of an area, and I am too type-A to look forward to something of which I don't know the outcome. I am confident in my son's abilities overall, but lack confidence in that I know what regression can take away. What he can do today, he might not do two weeks from now.

So, I concentrate on the here and now. Morgan is a wonderful boy who has worked his tail off in the last nine years to be where he is now. Who is loving, empathetic, and someone worth knowing. Who is everything I would want in a son.

I lie. I don't always concentrate on the here and now. The future scares the hell out of me.

Is the world going to be ready for him? Is he going to be ready for the world? Am I teaching him the life skills that he will need in order to be a man in society who can "function?" What the hell is functioning anyway- is this something I'm doing? Highly doubtful.

The next nine years will be crammed full of things. Wonderful and horrible. Highs and lows. More positive than negative if the past nine years are any indication.

Morgan will continue to defy any expectations I'm foolish enough to foist onto him, I hope. The future is a scary place, but we will continue to make safe havens for Morgan because we love him that much. The world doesn't come with a safety net. But we, as parents, can hopefully continue to provide one for our son- our love and support.

Tuesday, October 15, 2013

It Sounds Sort of like "Horse": Teaching My Sons Morals

I'm always looking for ways to teach my sons about morals, which would be a gray area for me in some places. Morality, it would seem, falls into the "do as I say, but never as I do or have done. Please. for. the. love. of. God."

Some things are easier to explain than others, but when I throw my own experiences into these lessons in morality... I fail.


Such was the case last night when it was brought up that I had once been to the principal's office (My high school friends of mine reading this need to shut their mouths, I was an angel, got that?). I have Thomas (Deciphering Dad, not the engine, just as annoying) to thank for this mess. I don't even remember how it came up...

"Mommy's been to the principal's office, right Mommy?" Thomas said, shooting me a smirk.

"You went to the principal's office, Mom?" Bay asked. He looked shocked. Obviously, he hasn't been taught our my colorful personal and family history yet.

"Well, yeah. And it was for something really bad. I made fun of a girl who was my friend. I called her a name. It was really bad," I said this all smugly, thinking I could teach my sons something. It hadn't really dawned on me yet that I was going to explain clique behavior with prepubescent females.

"What did you call her?"
"Why would you be mean to your friend?"
"You've always said to never do that!"

The questions they peppered me with came quickly, faster than I could answer. But I wanted to tell the truthish (it's a word), and for them to understand that what I had done was wrong. I wanted to teach them right from wrong.

Oh God, I'm pretty sure I messed this up.

"Well, I called her a nasty word that sort of sounded like horse, but it's not horse and I misspelled it. In a note. The teacher caught it."

"What was the word? Is it one you still say?"

"Um, no! Never." This was a lie. I call Roxy, our dog, a word that sort of sounds like horse regularly when she craps on the pavement, gets onto the couch, or pees on the floor. I just try not to say it in front of the boys. "I also called her a troll, like those weird troll dolls we found at Babe's?"

The boys looked horrified that I could be so mean to a girl. Thomas started laughing. I wanted to kick him.

"Why would you make fun of your friend? And call her a troll? Those things are ugly!" Bay looked horrified.

"Well, um... I dunno. She wasn't that pretty and Mommy had a much larger vocabulary than other fourth graders and liked to say things that other people wouldn't understand. See, I came from a broken home..." That last part might have been in my head.

"Mommy," Bay said, his brother nodding knowingly while they both judged my former nine year old self, "all girls are pretty! You should know better."  Bay and Morgan were incited to take up the cause for women everywhere, whatever that means.

Hell. The kid was totally right. He was parroting back the past almost decade of my feminist, "every woman is gorgeous in her own way," stuff I've crammed down their throats and fully believe in. We don't do ugly shaming in this house, fat shaming, etc. When I say "we," I mean that I forbid it in front of the kids and am guilty of being catty as hell (I try to stick to laughing at what people wear) and also make negative comments about myself in the mirror.

However, since they, you know, listen to me with ears and all, I really try to fight the urge to poke fun at people in any place but my head. My brain is a seriously sick, twisted, and dark place, people.

"Yes, boys, it was really mean of me, wasn't it?" I was seriously thinking I could turn  this around still. "And Mommy got into trouble for it. It's not nice to call people names."

Morgan's anti bullying video script kicked into the "on" position right about then, "You don't say, 'Ya fatty!' 'Ya stupid moron!' You don't ever call people mean names like 'troll' or that word that kind of sounds like 'horse,' Mommy. Be everyone's friend. Be good. Don't be that bully kid."

I tried to explain to them why a girl would say a horrible thing to another girl. There really was no decent explanation except that I'd been very mean. So, I tried that approach. They still didn't get why I would just do that. I finally broke down.

"I did it because I was with a group of catty and bitchy little girls and they hated her, so I had to hate her, too. It's like code of the female. Don't worry, guys really don't pull this crap."  Yup, I ruined that whole deal.

The kids looked at me in horror. Thomas hid back in the kitchen, laughing silently. Because. The dog wouldn't look at me.

Moral of this story: 
I really suck at teaching some kinds of morals. 
And maybe telling stories about them. 
Please don't send me extra kids, okay? 

*Also, if you're that girl who I called the word that I spelled incorrectly and said sounded like "horse," I'm incredibly sorry. You were obviously not that word (Bay also thought I should write an apology letter to you and your mom). You did not look like a troll. I was just better at making up insults than the other girls due to my extensive vocabulary.... and broken home.