Tuesday, April 30, 2013

His Ausomeness

*Just a final note for Autism Awareness and Acceptance Month. Figured I'd bookend the month. 

That isn't a typo in the header. "Ausomeness" or being "ausome" is being Autistic. It's being my son, or like him. Of course, I'm biased, but I'm told by pretty much everyone who comes into contact with Morgan that he's an ausome kid.

You know what? He's going to grow up to be an ausome man, too.

My son doesn't see bad in people, not that I'm aware of, and if he does, he doesn't say anything about it. Well, if he sees you breaking the rules, he'll say something.

He has no artifice, no guile about him. Morgan doesn't pay attention to trends with clothing or toys. He's been in love with Thomas the Tank Engine for the last six years and is happy as a lark whenever he plays with that demonic peeping toy.

He says his brother is his best friend and means it. 

At the age of 8, he still has zero shame about giving his parents hugs at school. Or expressing love to us- in front of his peers. He's a good foot taller than the rest of them, so I'm sure that might keep down the teasing.

Morgan never lets you forget something. Not a promise, not a lie, a date, or directions. It's pretty cool. And sometimes a pain in the butt, if it's around Christmas.

He draws almost only trains when given free time for art. I find that fascinating as an artist.

His current best friend at school is another little boy, also on the spectrum. They both think it's "super awesome" that they are each Autistic, have brown eyes, are the same age, and in the second grade. At recess, they run around together chattering up a storm and according to their speech therapist, they hold hands. Because they each have zero care about what people think. Thanks to classmates who are accepting of Autism, no one seems to think anything of it except that "hey, there's Morgan and C-, they're friends!"

Morgan, one day, will accomplish great things on a bigger scale than what he's doing now. I'm so proud of my ausome son.

Culling of the herd

cull  (kl)
tr.v. culled, cull·ing, culls
1. To pick out from others; select.
2. To gather; collect.
3. To remove rejected members or parts from (a herd, for example).
Something picked out from others, especially something rejected because of inferior quality.
I've always been a bit of a culler. I have pack rat tendencies, so I know, in the back of my mind, that I must rid myself of excessive "baggage" in my life. Whether it's clothing, books (okay, I suck at ridding myself of those), shoes, paper, or even friends, I collect things. It's odd to refer to people as things or objects to be collected, I know. However, one thing having children and especially having a special needs child has taught me, is that sometimes people must be rendered as inanimate objects. Sounds hard, right?
To render someone as such takes away the emotion necessary to cull them from your life collection. I'm bad about this. That is, I put more emotion into one person than is necessary. I give that person more credence in my life than he or she deserves.  Therefore, if you examine someone critically with as little emotion as possible, you might upset yourself less. Again, I'm bad at doing this. However, when I actually set out to do it, I'm merciless. 

I've culled many people from my life. They needed to go. 
One person, a "friend," couldn't take me "ignoring" her at my son's birthday party. She said that I spent too much time talking to other adults and that I basically just skimmed over her for the two hours of the party. Sound ridiculous? You bet it was. She also could not take that I was "always" sick. Hello, autoimmune disorders!

I've culled family members. My biological father in particular comes to mind. I could say this wasn't a big deal, but it was huge. I mean, he's 50% of the reason I'm on this planet, correct? But his negativity, lack of insight, alcoholism, and wife were more than I wanted to subject my family to.  His wife was actually the deal breaker for me. 

Reasons for culling in life vary, don't they? What might be a big blow up with one person will be something that has simmered for a long time with another. 

 Relationships are supposed to be give and take, not one way streets.

When I think of culling my herd, I don't see it as getting rid of "defective" people. Rather, I see it as ridding myself of people who bring me down, don't enhance my or my family's life in any way possible, or people who I am beginning to loathe being around. If this sound hateful, you should see it in my head. 

I might have become slightly stand offish about making friends in the past few years. I wonder if people think I'm parenting correctly because slurs have been thrown out. I think about how others parent their kids. I also sometimes think about the gossiping which invariably goes on behind backs in groups of people. 

Recently, it came to my attention that a group of people I once thought very highly of are nothing but facades of caring individuals. These people put themselves out there to advocate, inspire, and illuminate, if you will, everyone who "knows" them. However, scratch the surface and you find utter crap. 

When illusions are shattered and reality comes crashing in, icy cold water seeps into your veins. That person you thought you knew, even if it was their projected image, is so far from the truth that it's nearly gut wrenching. Be wary of people who want to lob words and then duck and cover. Or hide behind someone else. Or claim that you're guilty of something for which there is zero proof. 

People who clamor for attention are scary and dangerous. They promote mob mentality. 
That's all there is to say about that.

Thursday, April 25, 2013

Hidin' my crazy

My friend Mac over at Homestyle Mama private messaged me earlier on Facebook saying that there needs to be an Autism Mama version of this song for me:

I laughed my ass off because it's pretty true both in and outside of anything Autism related.  Hell, even before the husband and kiddos, that whole song probably would have been true. I've never been shy about being outspoken and kind of ballsy and it's transferred over "some" into the world of advocating for my son. I mean, just a tad.

My grandmother has been telling me, much like the mom in the song, to "act like a lady" my whole life. The woman's even put me in pin curls and taught me to cross stitch (which I enjoy doing, to be fair). To basically "hide my crazy." Well, I can't. I try to, I really do. Honest.

I bite back swear words, I wear make-up, style my hair, put on cute clothes, all that jazz. Most days, anyway. She always tells me she wishes I would swear a lot less, she's been saying that since about 1998. Of course, she only says "shit" whenever she drops something. And, to be honest, she's not that great at hiding her own crazy, either. I hear she once hid from visiting friends in her gardening shed because she thought they were Jehovah Witnesses. Who does that? As I write this, I'm reminded of the time that I told some nut job that we were Jewish and I didn't want any of their religious pamphlets (they were there for the 10th time, okay?)... it was Christmas. We had decorated. In a big way. With a tree, by the doorway that I was standing in. Yeah...

I've been known to shoot off at the mouth. Or, as I like to call it, I have verbal diarrhea. Constantly. As soon as something pops into my brain, it comes out of my mouth. It's hard to check it. Sometimes I bite my tongue, but all serves to do is make me look nutty as hell.

I once, in a hormone fueled rage, asked a college "professor" for her teaching credentials. In the middle of class. The idiot had the nerve to give me a lower grade on a term paper than another student who had listed Wikipedia as a source. Really?

My husband will tell you that I am, by no means, sane. He'll say that, in addition to marrying the love of his life, he married his favorite sparring partner. No, we aren't violent, but we do spar verbally. We met in a class and I told him that the boats he raced were "ocean and lake polluting pieces of shit." He said that the sailboats I raced were great, for old people. Those are fighting words. I even swore at him when he proposed marriage. I mean, he did it as a surprise! I don't do surprises.

My sister attests that I'm crazy. We swear I come by it naturally. I mean, Mom, we love you, we really do.. but you're kinda nutty. In a good way. Swear.

I honestly think that as long as I keep my crazy in some sort of check I'll be okay. Certain school officials have known my propensity to fly off the handle and demand action. Fear can be good. Healthy fear of me? Even better. Sorry, but when someone tells me that my son getting his ass beat by another kid isn't assault and neither is him getting peed on, but him getting spit on is assault, don't expect me to handle that in a calm and rational manner.

Please don't take my admitting to being batshit as a reason to notify DCS. My kids are safe. Probably even safer due to my handling things in an off-kilter kind of way. I don't look at the world through rose colored glasses or really believe in bs-ing my way through things. Okay, that's not true. I bullshit, but I try not to sugarcoat. There, that's a better way of saying it. I speak up for myself and others when necessary. If that makes me crazy, I'll take it. In the meantime, I'm probably more vulgar, potty mouthed, and think differently than the other park moms. I'm okay with that.

I wish I could be just a little less dramatic
Like a Kennedy when Camelot went down in flames
Leave it to me to be holdin’ the matches
When the fire trucks show up and there’s nobody else to blame

Can’t get revenge and keep a spotless reputation
Sometimes revenge is a choice you gotta make
My mama came from a softer generation
Where you get a grip and bite your lip just to save a little face

Powder your nose, paint your toes
Line your lips and keep 'em closed
Cross your legs, dot your I’s
And never let 'em see you cry

"Mama's Broken Heart" Miranda Lambert

Wednesday, April 24, 2013

The Jokes Fall Flat

Morgan got into the car today in a huff. He was clearly upset. I was on the phone with my mom and asked her to hold for a minute while I tried to (excuse the reference) decipher what was wrong. "Some third graders made fun of me. It was mean. They said they could see my face," he said. Well, that was clear as glass.

I let him speak to Mom in the hopes that maybe he would further his explanation of the events. Nope, not happening. If anything, more things that had gone wrong today came up. It seems that a boy or two might not like Morgan and have let it be known. This, understandably,  upsets Morgan. He started to cry/go into a meltdown over missing her, so I asked him to hand over the phone to his brother so that I could try to calm him down. Once we were back home, I tried to get to the bottom of things.

I asked him to walk me through his day. When I do things like that, I kind of ask myself "why?" because it's like putting together a jigsaw puzzle but with several puzzles going together to make one. Morgan gives me plenty of details, they are in chronological order, but they are sentence fragments. They are half thoughts with the other part stuck in his head and upsetting him or amusing him. It can be frustrating on my end, to be honest. The puzzle pieces don't frickin' fit.

It appears that the first problem which really bothered him was a boy knocking another boy's work off of his desk. Morgan somehow was accused of doing this? I have no idea. I remember being that age and wanting to point fingers at my sister, even jokingly, or another kid in order to keep out of trouble. Morgan being the literal thinker he is took this to mean that this little boy is, in his words, "out to get him" and is now afraid of him. Thing is, these two were friends up until probably Monday. Okay, moving on...

The second major issue, and the one which inspired the title of this post happened in what I'm now referring to as the riders pod. You see, the school puts all of the kiddos who are car riders into a group which is between two buildings in a covered courtyard. They aren't separated by grade that I am aware of because Morgan's always talking about kindergarteners, first graders, second graders, and third graders in the afternoons. At no other time than early mornings do these four groups ever get together. Anyways, I know that the noise sets Morgan off. He's had to, on several occasions, walk up to the front area (the loading zone) to get a sensory break. He's testy by the time I get him, so I try to arrive early.

Today, I was early but not early enough. It was rainy, so the carline was inching like a drunk caterpillar. Morgan didn't get a sensory break because the school was short staffed, I think. So, he (I think, best as I could glean from our conversation) tried to make conversation - practicing social skills? - with two third graders. The third grade boys teased him, he says. The "we can see your face thing." Apparently, it was over him not having freckles. I'm not kidding. My kid meltdown over this.

Why? I can see how badly his feeling are hurt. I get that he's upset. But, from what I can tell, the kids were  just making an observation, or, at worst, making a joke. Which obviously fell incredibly flat and wrong.

Back to the facial cues drawing board? Yep.

Tuesday, April 23, 2013

A Potty Mouthed Post

*Contains language, you should be used to this by now if you're a regular reader of my blog. Also, does this kind of crap only happen to me? Please tell me no. Please. 

After speech therapy today, Bailey headed to the really great park down the road from the school to kill some time before picking up Morgan. There are three major home school co-ops in our area and Tuesdays and Thursdays are meet up days at the park, so Bailey's usually guaranteed to have kids around his age to play with. So far, I've had incredibly good experiences with the local moms. I mean, really good experiences. However, today... well, today's encounter with one mom had me alternately scratching my head, making me want a drink, and also making me question why it's not legal to revoke someone's ability to have offspring.

It started off innocently enough at the swing sets. Bay was happily swinging along. I was taking pictures of him and pushing him. She walks up with her girls, we chat, like moms do. Trade information. Parks are like one big networking party, I think. She mentions she home schools. "No shit," I think, "we're at the park, on a Tuesday at 1:45pm and your girls are mostly over the age of four." She asks if Bay is my only child. Bay answers for me, "I have an older brother, Morgan. He's eight. He has Autism. He's awesome!"

This catches her and another mom's interest. The other mom, it turns out, has a child with Down's Syndrome. The moms, I'll call the NT only mom, "Deluded," and the SN mom, "Yes," and I chat for a while by the swings and then go our different ways after our kiddos. Yes' boy is a bit of a daredevil and Deluded has four kids, all girls, were wrecking havoc. I ran into Yes' son with Bailey over by a climbing wall. I offered assistance and he very emphatically said, "I got this." It was too cute. He and Bailey were like monkeys on that thing.

I wandered back to the sitting area and encountered Deluded and Yes again. Deluded proceeded to begin asking me about Morgan. Rather, she asked me about Morgan and "his Autism." I get this a lot, so I tried speaking in general terms, you know- I don't separate the diagnosis from the child, he's awesome, he's into trains, very social for the most part, loves math, etc. What she did next floored both Yes and I.

Deluded: "Have you ever considered home schooling him?"

Me: "Well, sort of. I mean, we're talked about it, but have decided not to because the school system here has really worked for us.  He's doing well and until that changes..."

D: "We actually have several children with autism (note the person first language? yeah...) in our co-op and since they've began to homeschool, they've shown zero signs of regression. I mean, you can't even tell they were once kids with autism. You should really try this!

Me: "Are you being serious?" I cast a dubious look at Yes... She caught it and giggled.

D, looking about as fanatical as a cult member with a strange gleam in her eyes: "Yes! You should try it! You know that with home school, vitamins, and an interactive diet, you can actually reverse autism? These moms swear by this approach. They don't really even do much therapy other than some doctors in New Orleans."

Me: "Those wouldn't be DAN! doctors... now would they? And just what kind of 'interactive diet' are we speaking of?"

Guys, that gleam? That cult-like gleam? Ah, hell... it was bad. Very, very bad.

D: "I don't know the doctors' names. They  might be named Dan. I don't know. But the interactive diet is key, very key. You have to follow it specifically <pronounced 'pacifically'> and it works. I've seen these kids go from barely functioning to, like I said, you wouldn't even be able to look at them and tell they have autism."

Okay, I was over asking questions and messing with her. I mean, she didn't even know I was messing with her! What's the point? I thanked her <sort of> for the information. I was befuddled, really, and slightly amused. I don't ascribe to a special diet for Morgan, really, for "his" Autism. I definitely don't buy into the DAN! approach.

Then, shit got real.

D: "So, all you have are two boys?"

Me: "Yes."

D: "I'm confused, though. Your older son is the one with autism, right? You had another one even though <whispered> you knew it was possible to pass it on again? Did you just not want to try again because of autism?"

Me, "accidentally" kicking sand at her: "Sorry about that! No, my uterus said 'Time's up!' and turned in it's time card. It developed endo and adenomyosis. Gosh, looking back... it must have known about the A-card, ya know?!" <giggle>

Yes, by then, was laughing her ass off. She told me later that I had dealt with that a lot better than she would.

We were lapsing into thankful (for me) silence for a minute when one of Deluded's girls came running up. That's when the Very Bad happened. A little boy had thrown sand at her. Yeah, it's a playground. Deluded went over to the sandbox to, I guess scold the kiddo. Yes knew that's where her kid was, too, and followed. I couldn't find Bay, so I went, too.

Yep, it was Yes' kid.

Deluded, in what I suppose was meant to be a show of "this is how informed I am" told her child to not get mad at Yes' child. That the little boy "has a very bad illness called Down Syndrome and cannot help the way he acts... he just can't control himself." Well... hell.

Yes flew off the handle, crying, and called Deluded a bitch. "Bravo," I thought. Deluded said that she was merely trying to inform her child how to, get this, "treat the poor mentally challenged children of the world."

That's when I lost my shit, brought down the bitch hammer,  and called Deluded an "abelist twat."

Because, you know, sometimes everyone is a potty mouth.

Yes and I swapped numbers.

Monday, April 22, 2013

This, too, I fear

Tomorrow, I pre-register Bailey for kindergarten. He's pretty excited, especially since we just found out (for sure) he's not due for another booster shot until the age of 11.  He's looking forward to meeting new friends, learning to read, furthering his writing, playing, crafts, etc.  

I'm looking forward, with zero shame, to being kiddo free for seven hours a day starting the second week of August. I've loved being a stay at home mommy, don't get me wrong, but I've been one now for nine and a half years (pregnancy counts!) and frankly, I want to be able to pee alone, work without interruption, clean something and it stay clean for longer than five seconds, and maybe, I dunno, do something not kiddo related.

My head was already swimming with how we'll adjust our budgets for double the field trips, class fees for God knows what, lunches (my kids are so brown bagging it next year), uniforms, school supplies, etc., when Morgan got into the car today. He had been sent to school with $10.00 for the book fair and an order form for the Legos book he was supposed to get for Bailey and him. I told his para he could spend his change, so not that surprisingly, he bought a Thomas the Tank Engine book, too, and a scented marker. He handed Bay the Legos book and said, "Here's your book, Bailey- it's a chapter book!"

I peeked at Morgan's book and saw it was a counting book. I know he bought it because it had the demonic blue engine on it, but the differences between the two choices were fairly stark. I mentioned to Morgan that he can read his book to himself with very little help from me and he told me that's why he bought it. He mentioned that the rest of his class, or "everyone" is already reading chapter books and other than a couple of other kids, he's the only one reading non-chapter books. I asked how that made him feel since I know reading is a sticky subject for him and he said it's okay, but he feels "left out."

I gave him a pep talk, like I always do when he feels down, but it tipped off a flood of anxiety for me. With Bailey entering school, how long will it be before he catches up to his brother... and then surpasses him? Bailey tested at a "above average" level on a few things when I had to have him evaulated through the state last fall (he was being tested for speech, you get all tests). He is already writing his name, numbers, letters, wanting to read, legibly drawing, speaking fairly articulately (As in, even with his lisp, his speech organization is clear.), and striving to learn things that Morgan doesn't know.

I'm scared.

If Morgan feels "left out" because of where his neurotypical peers are in school, how will he feel about his neurotypical brother?

Is it wrong of me to <almost> wish that Bailey never tests as gifted? To never be above grade level?

I want what is best for both of my children... does that mean I must forsake one's feelings for the others?

This is something that I've really been struggling with ever since it was made apparent that Morgan would be "behind" by whatever standards and that Bailey would be slightly above. Morgan is ahead in math, for now, and we hold onto that. I love that he loves that subject. It's his. However, in other areas, he's deemed "behind," "odd," and "age inappropriate."

I feel, sometimes, as if I must try to hold Bay back. That is so wrong. Each child, to my thinking, must be encouraged and gently pushed to the fullest of their potential. I don't act on that feeling because I know how wrong it is to feel that way. I add it to the laundry list of things I know I'm doing or thinking wrong. Ways I might be microscopically or hugely messing things up.

I'm just stating that whatever Bailey accomplishes, I hope that Morgan does, too. I hope that Morgan never thinks Bailey's academics comes as easily to his brother as riding a bike did. I'm scared shitless of that.

My two awesome kiddos.

Those of you with both Autistic and neurotypical kiddos, is this "normal?"

Thursday, April 18, 2013

But I want it, too

Bailey loves his older brother so much. "To the moon and back," we say. He does a lot of things to emulate Morgan. For a while, he even flapped, cut his eyes to the side when speaking, and imitated some of Morgan's vocal stims. He loves him so much, he told me today that he wishes he had Autism, too.

I asked him, "why?" Why would he want Autism?

"Because I want to be smart like Morgan and I love him. I want to be like him. But I don't want meltdowns, those look like they hurt," he said.

I contemplated how I would talk about this. I didn't want to put down Autism to my son because, to me, that would be to put down his brother. At the same time, I really wanted to be honest with Bailey and not spare that many details. I wanted to make him see that being Autistic isn't a picnic, just as being the brother of someone who gets so much attention isn't a picnic, either. Not to offend anyone, but this is what it is.

"Bay, you're smart, too. You don't need to be like anyone else because you're great being you."

I explained that while, yes, Morgan has an innate ability to discern math problems, find the details in some things, and remember the scripts to movies and shows, he also has some learning difficulties. For instance, he's in a special class for reading. We don't know if he'll ever be out of those special classes. We hope so, because that's the goal, but we just don't know.

"But if they're special, that means they're 'good,' right?" he asked. "Well, one would hope so and in this case, it looks that way, yes," I replied, "but there are 'special' classes all over this country which aren't doing what is best for those kids. You hear me speak about Special Education a lot? Well, I say it's 'special' because it's often overlooked. Those kids are often overlooked or treated badly. Bay, it keeps me worried."

We talked some about how Morgan's been bullied just by being Autistic. How, because of his stimming, scripting, and love of trains, he's been a target for jerks in the past (and present, but not so much). Bay's response was awesome. "Mommy, next year, Morgan and I will be in school with each other. Those kids won't mess with my brother. Know why? I'll go tell them 'Don't you mess with my brother or I'll tell Santa AND Jesus. Then I'll snatch you baldheaded!!'" The ginger spark plug has spoken, future bullies. You're warned.

I pointed out to Bailey today that he doesn't have to be Autistic in order to be smart or have meltdowns. He's already smart and he definitely has had meltdowns.

I know that was a lot for my five year old to absorb. He sat quietly, thinking... then he asked, "Am I special?"

Without missing a beat, I told him, "Of course. Everyone is special, sweetie. It's just that some people are special in different ways. You're my special redheaded kiddo. Morgan's my special brown haired kiddo. He happens to be Autistic, you happen to not be. I love you both equally."

Morgan hung the moon, as far as Bay is concerned. I love that even though they fight, they are each others best friends. It worries me that I might be failing Bailey at times by concentrating so much attention on his brother. I worry that I spoil Bay to make up for the lack of time I might give him when his brother is home, which is kind of silly because he's with me all day. I worry about what I am teaching him about his brother.

Yesterday, when we picked up Morgan from school and a meltdown was ensuing in the carline... Bay reached over to his brother and said, "Morgan, it's okay... Mommy's here, Bailey's here. We're here. Cheer up, please? Hey, I gotcha an Icee!" He kept stroking his brother's hair and saying, "shhhh" as I was doing the same. He worked with me to calm Morgan down. It worked.

Monday, April 15, 2013

Teaching bigotry

Growing up in the South, I was exposed to a lot of bigotry. It was both overt and covert in terms, but my mother always taught me that human beings are not to be judged by the color of their skin. Instead, it is what is in their hearts one should look to in order to find the real essence of their beings.

That being said, the man I called my stepfather was a by the textbook stereotypical southern male who had grown up pre and post Jim Crow laws in Nashville. I grew up hearing the hated "n-word" in my home, along with other slurs against humanity. From that, I could have been taught to be a bigot. However, I knew it was wrong. My mom still instilled in me to make my own decisions about my friends and I did. I kept, and keep, a very diverse group of friends and tend to look at the world through the view that everyone - no matter their skin color, race, religion, or neurology - is equal and good, deserving of the same rights as every other person. Bigotry is taught.

Raising children in the 21st century South can be tricky, from what I can tell. Both of my kids have been taught by my husband and I from birth on that all people are created equal. However, when you send your children out into the world, even if it's onto your front doorstep, you don't know if those ideals will hold. What is said at the dinner table and agreed upon might just disappear when playing with friends who look just like them.

We live outside of New Orleans, a very culturally diverse area. Our neighbors are white, black, Creole, Venezuelan, Brazilian, Mexican, Indian, Native American (Houma Indians, to be exact in most cases), and so forth. We moved here from the mountains of Appalachia, where there is culture, but not so much diversity. My kids had probably only ever remembered seeing a handful of people whose skin colors were different from theirs in real life before moving here. Morgan, upon getting into the car after his first day of school here, told me he had met "the most beautiful girl in the world!" I asked what was she like, meaning personality, looks, etc. He told me she, "is smart, pretty, laughs a lot... and she's brown, Mama." I about drove off of the road, because I've never thought to describe someone by a Crayola color.

However, to my literal thinker, this was a legitimate way of describing someone. I was worried because I didn't want him to be punished or wronged in some way for his way of describing someone. I had to sit my son down and explain to him the different ways of categorizing people. To do so felt... bigoted. Up until then, I had been raising my kids to be well, color blind, I'd thought. I've raised them, I thought, to see beyond color or any sort of differences between themselves and others and just see people. To only see good and bad. 

Was I doing something wrong?

I spoke with my neighbor, a preacher with two biracial kids, who told me that from what he could tell, I was doing the correct thing. However, I might need to actually explain how we all got here, to this point, to my kids. But how, I wondered to him, do I explain sensitive things such as slavery, Jim Crow, and desegregation to Morgan? I don't want my son to only have what he takes from school as the only watered down context. He pointed out to me that I don't have hate in my heart and I'm fighting a type of desegregation fight with special needs inclusion. So, I went on.

I might be going about all of this in the wrong way, but I teach my children that each of us are of equal worth. It does not matter what race one is... or if you speak English or speak at all. It shouldn't matter if you live in a nice suburb or in a ghetto in New Orleans (which, I will readily admit, I lock my doors going through- we were lost going through there last Saturday... right down the road from where a little girl had been shot a week before. It was scary, okay?).  Both of the kids know to not be afraid of wheelchairs or braces- those are orthopedic jewelry. They don't look down on people for being poor because they, to the best of our knowledge, don't know what that is... for now.

I've also let them know, in true Southern mama fashion, that I'll snatch 'em bald headed if I ever catch a slur on their tongues because that's not right. You are graced with however you are made. You make the best of it. It is your choice to either wallow in circumstances, work with them, or rise above. Of course, we have been dealt a luckier hand than most. I realize this. That is also why I teach my children that it is always important to give back- I'm still working that one out.

Bigotry is taught. Hatred is taught. We hate what we do not understand or what we fear. 

I am afraid of quite a bit. I cannot say that I personally hate anything other than fear and bigotry.  

Friday, April 12, 2013

Putting words in his mouth

This week, Morgan had a book report due on a non fiction topic. We'd had this coming for a while and two trips to the school's library were required because the first trip wasn't well... good. Morgan brought back a book that I would never deem "okay" for a report. I wrote a note to his teacher asking her to please have someone help him pick out something during library time last week. The two books he brought home seemed below his reading level (currently at entry level of 2nd grade- we're moving up!), but I decided to go with them because I didn't want to make Morgan uncomfortable.

So, we read the books. We chose one book for the report, which is pre-printed with questions. Morgan did very well, his handwriting was laborious and neat. The last question of the report, however, was what killed me.

"Did you enjoy this book? Why or why not?" Morgan said he did because it was easy. As in, easy to read. Okay... I asked him why would he pick an "easy" book to read when the instructions for the report were to choose a book at or above his reading level.

"Mom, I'm stupid. I can't read." I'm paraphrasing here, but that was the gist of the conversation we had. He'd chosen those books to read because he thinks he's dumb. He knows he has a hard time reading. He knows that it's difficult for him to comprehend or "know" (his word) what he's reading about. Morgan putting his insecurities into words made my gut clench.

Reading has been his biggest weakness since we can remember. In every IEP, there have been instructions for someone to read aloud tests, assignments, etc. Every night during homework, I read Morgan's instructions, reading assignments, English work, science if it's given... all of it. I make him read it, too, but he doesn't comprehend a lot of it. If it's spoken, he gets it. But he tells me that the words "swim" and tests show that his reading accuracy is 31 words per minute. History has shown that normally, I don't believe in most school issued tests, but in the case of reading, I might be willing to make an exception.

But he's not stupid. I was wondering where Morgan gets that from, because I won't even allow his brother or him to say, "that's so dumb/stupid" or "you're an idiot" in conversation. I kind of poked and prodded him and, turns out, something might have been said to him about him going to his Reduced Numbers Class (RNC) every day at school. The RNC class he attends is for reading. Morgan told me that the class is because he's "dumb" at reading. That makes me so sad. I corrected him and told him that the class is for him to read quietly in, to learn in an environment which isn't so noisy, and to be able to get more help since there are so few students. That seemed to make it better.

This little tidbit this week has made me think about what I'm teaching my son(s). With these extra supports, extra classes, lightened load here, overhearing me talk about Autism there, what am I teaching my son? Better yet, what are all of us teaching our kids about their self-worth? Are we teaching them that they are the best that they can possibly be or that they must work twice as hard as the other kids in order to not be "stupid" or "different?" We want functioning adults, but what's our definition? Are we accidentally emotionally crippling our children somehow by doing what we feel is best?

I get that by reaching for the best possible resources for Morgan, I really am helping him, please don't mistake this. I understand that by signing him up for a summer school reading program (Monday through Friday, 8:30am-10:30am, end of May until the end of July), I am trying to help him be the best Morgan he can be. However, I try to check myself by asking "When does he get to be a kid? Is this going to hurt him in the long run by sending the message that his best effort wasn't good enough? Am I not presuming enough competence?"

Am I the one who put those words into my son's mouth?

Friday, April 5, 2013

He's not a Lost Boy

I read a lot about Autistic children being "lost" to their parents. I see those pictures of kids behind glass, read things which indicate an Autistic child is locked inside themselves, or read of parents, due to an inability to understand their child, thinking that their child is lost to Autism. I was once that parent.

I used to describe Autism as a kind of rabbit hole or looking glass that my child had traveled into. Perhaps that's still true, because I still don't understand a lot about how his mind works or how he feels. However, I know now that for years, I just wasn't listening. I like to think that a lot of parents are in the same boat as me. That they just don't understand. They don't speak Autism.

I've always said, both in real life and within this blog, that I would love to take a trip into Morgan's brain... just to feel what he feels and to see what he sees. But that's not possible. God, if it were, my passport is ready and waiting... but I'll be waiting a very long time. I'm not Autistic.

I used to watch Morgan playing in silence by himself and think, "Does he even know me? Know I'm here?" I'm sure he did, but he was engrossed with the wheels of his cars, with the sand, with his trains.

I once talked about fighting Autism to gain my child back. Silly me... my child was right there the whole time. Fighting Autism would be to fight my own child. I see that, now.

Autism, if you don't walk it, speak it, think it, can look like a strange place. It looks scary as hell, true, but only if you let it be that way. Yes, some of the things which sometimes come with Autism - seizures, in particular - are scarier than hell, I won't lie about that. As a parent, you want your child to be comfortable, to not have to overcome and persevere at a young age and to see them struggle or seize... or not eat for days on end.. or not talk.. not hit major milestones... is scary.

But the thing is, this is your child. Your child isn't lost. Your son or daughter hasn't gone away to a foreign land. He or she is right here, right now. Autism is just... different. Sometimes brutal because this isn't what you expected. No one comes into parenting expecting to be a special needs parent. You know what? On even your best days, all of this can suck, if you let it. I'm guilty of this feeling, too.

I'm just telling you... it doesn't have to be this way. This is my perspective at least.

One time, I actually let my guard slip and Morgan was lost. We were at the Nashville Zoo with a friend and his daughter. Bailey was an infant, Morgan was nonverbal with some echolalia. We had just been through a small portion of the zoo and Morgan was nearing a Mach 10 meltdown, so I decided to take him and his brother to the gift shop on the way to the play area. We looked around, greeted some zoo workers, then continued on to this huge play area. Morgan was itching to play... he was wanting to bolt, but I had a stroller and the thousand and one pieces of paraphernalia which go along with an infant and toddler so I could not follow him. My friend suggested we allow the "big kids" to go into the play area and we both stand by the only two points of exit/entry. After all, he couldn't slip past us, right?

We were dead wrong. I must have glanced down to grab a bottle at some point. I remember looking back up, trying to find my three year old in the crowd of kids, not being able to find his bright blue shirt. I began to panic, breaking out into a sweat, crying. I signaled my friend, who had been looking in tandem with me. I needed him to take Bailey so that I could go across the narrow walkway into the castle-like structure to look for Morgan. We just couldn't believe that the two of us, two "responsible" adults, had lost my child! 

As I began to walk in, a man came up to me.

"Are you looking for your son?" he asked.

"YES!" I nearly screamed at him, hysterically.

"He's over at the gift shop pay phones, saying 'Ma-ma.' I saw you over there earlier with him... I think he's trying to call you."

"Oh thank you, God," I thought, as I thanked him. I had tears pouring down my face, my heart was hammering in my ears and I sprinted to my son.

He was right where the man had said he would be, surrounded by the zoo workers we'd met earlier, holding the handle of a pay phone... he had been trying to call me. The workers told me he'd been there for maybe five minutes and had wanted a stuffed animal. When he'd realized that he was alone, he'd walked to the phone, picked it up, and started saying, "MA-MA!" The man had gone to the play area, remembering seeing us there earlier.

I got very lucky that day five years ago. My son had been lost... but we found each other.

Wednesday, April 3, 2013

Autism Aware and Accepting

* April is, according to several sources, Autism Awareness AND Acceptance Month. My feeds for the last two weeks or so have been chock full of memes, statuses, jokes, etc., all in the name of Light it Up Blue (LIUB) and Autism Awareness Month. This is, for all intents and purposes, "our" month. I wasn't going to write about this... but I changed my mind and decided to ramble. This is what Autism Awareness is for me, a neurotypical mom to an Autistic boy.

When I hear "Autism acceptance/awareness"... I see in my mind's eye my little boy playing with his trains, speaking kind of like Yoda, scripting, stimming, and sometimes wanting to be a part of this huge world that doesn't really understand him. When I hear or read those words, I think simply of Morgan and how far he's come to beat odds which someone who didn't really know him set forth. That person was me, not knowing Autism.

I wish someone had told me, when I first heard about Autism in relation to my son, to not be so afraid. That there are no set rules in Autism except for the ones my Autistic son might make. To never believe those godawful things, barriers, and statistics because my son would surprise me to the point that I would tuck his baby book into the book case and just stop caring about filling it out.

I wish someone had been there to tell me that at some point, I'd feel better about "that Autism stuff" as I remember someone (me) calling it. That I wouldn't cry so much one day and that my tears aren't for a life lost as some say, but for a boy in the here and now who is struggling in our neurotypical world.

Once I let go of what I've always held as a "perfect" childhood for Morgan, it refocused me and made me concentrate on what is important. This is not to say that I don't get depressed momentarily or longer about his struggles... it just means that I accept my son. I accept that he is Autistic. This does not mean that my dreams for my son disappeared, but it does mean that he is leading my hopes and dreams for him based on how he is and what he's into.

Acceptance of Autism and awareness of how actual Autistic adults address themselves is also what makes me mad at times when I see seemingly innocuous memes or statuses about Autism. Lists of how one should speak to Autistics... person first language...  I get that I'm not like all parents whose children are somewhere on the spectrum but I have a hard time accepting that I'm wrong for calling my son "Autistic" instead of "a person with Autism." I'm not wrong for that, I just cannot, in my mind, separate Morgan from Autism or Autism from Morgan. It is what it is. He's Autistic. It's taken me long enough to say this and I'll keep saying it.

I think that awareness campaigns are, in themselves, good things. Bringing attention to something like Autism needs to be done because there are people outside of the "Autism bubble" who really have zero idea what Autism really is all about. However, I don't kid myself and think that one day or month will bring about any monumental changes to our way of thinking, our schools, our hospitals and their treatment of Autistics, or our government. People need to also be aware, too, that this month can be painful for some- Autistics in particular. I get where they're coming from in a way. I, too, believe that Autism shouldn't be represented by a screaming six year old. Kids grow up to be adults. Autistic kids will grow up to be Autistic adults. Remember that.

I feel as if sometimes I must not speak up for how we raise awareness in our house because maybe, just maybe, I'm doing the wrong thing. People have told me this and really, I tend to not agree. However, I do check myself when talking about Morgan to strangers. Do I really need to state he is Autistic? No... I don't. But I do. It's been said that I'm labeling my child and that this is a danger because it might give him a complex of who he is and what he can or cannot accomplish. Well, I see it as this: my son is Autistic and other than being open about certain situations he might not be able to function in without a sensory overload, I don't set limitations on him. Not that I can see, anyways. Believe me, I'm my own worst critic.

When I think of Autism, I think of my son. He's what I have to go on other than the hundreds of books I've read or "experts" I've heard. He will be my face for Autism and that face will change year after year, just as his body does. But I will steer him and others toward the voices of the Autistic adults who have lived what he's lived, experienced things similar to what he's experienced. I'm not the expert any more than any other parent out there. This is another form of acceptance for me...

I think of my boy who will proudly say, "I'm Autistic." That's his acceptance because his parents don't allow him to believe that there is anything "wrong" with being wired differently.