Wednesday, January 30, 2013

When you assume...

Editor's note: This contains cursing and me poking fun at myself. 

Yesterday morning, before the sun came up, Morgan came bursting into our room.  He was saying something about a nightmare.

Me: "There, there, darlin. It's okay. What was the dream about?"

Morgan: "DRUGS! Some kids were chasing me and trying to give me DRUGS, Mommy."

Me <fighting sleep, but shocked>: "It was just a dream, come snuggle, baby."

I got up after Morgan had left for school with his dad and got to thinking... Where the HELL had the idea of drugs come from? I know that his school had introduced D.A.R.E. back in the fall... but lately, in the last week, Morgan has been talking about drugs and once even brought up needles. I mean, WHAT THE HELL?

In other words, I began to freak out, Jessi style. It's not pretty. It's kind of like taking a ton of thoughts and flushing them in a toilet, only to have the toilet back up and stay that way.

I gave it some thought, which when I mix in copious amounts of caffeine and a serious lack of sleep, does not go well. I sent his teacher an email that I thought  was phrased politely, asking if the subject of drugs had been brought up lately in guidance or something. Rightfully so, I think I pissed her off. Frankly, I tend to do that. I lack a filter, especially when I'm worried, upset, or pissed. I wasn't pissed, I was wondering where in the world my kid was getting this crap about drugs!

For the record, let me state this: the adults in this house are super careful about the topics of conversation around our children. Well, we try, okay? Both of the kids are little tape recorders that jot down everything in their heads and spit them back at the most inopportune times possible. In Bailey's case, he spits it out almost immediately or during the most embarrassing times and delights in it. In Morgan's, well, he likes to wait a while, sometimes a week, sometimes a month or more and inserts it almost casually and always innocently. So, I tend to forget that his memory is like an elephant. Yeah, I need to work on that.

Anyways, by the time I picked up Morgan from school, I was in a tizzy. The day hadn't gone that great. Lupus and anxiety can wreck havoc on the best laid plans and all that. I tried broaching the subject of the dream and I got this:

"I was in a haunt(ed) house. Some kids chased me. I ran outside and slipped and they tried MAKE ME TAKE DRUGS! They made you, Bailey, and Daddy take them, too. You turned into zombies."

I snickered to myself, but took it seriously. As seriously as I could, anyways. Then, I waited. I had Morgan do homework, I cooked, and waited for Tom, my husband to get home. He's great about getting to the bottom of things. Sure enough, we got the full story (and boy, it was a story) out of Morgan.

For those of you that follow me on Facebook, you'll recall an incident from a week or more back involving my son being called retarded. Well, Morgan's teacher, after I told her, arranged for an anti-bullying video to be shown. Morgan, last night acted out the majority of that video...

"A bully is someone who shoves, punches (this is complete with hand gestures), hits, or calls you names. Bullies also try to give you drugs!" It went on and on... but I'll spare you. Plus, I was too interested in how animated he was. I honestly think we got the entire video in our living room.

Then, just to see what he'd learned, I asked:

"Morgan, what are drugs?"

"Drugs are bad! They are like circles and BAD!"

His dad and I exchanged looks and explained to Morgan the difference between illegal and legal drugs. We showed him how I have to take medicine for Lupus and RA, also called drugs, every day and that he and his brother should never  touch Mommy's medicine. This might end up with Morgan announcing to his class that his mom is on drugs... that'll be a fun call! We also talked about how correct he was in that bullying thing.

Yep, folks, drugs are bad. Also, I'm an overreacting moron who should have waited to speak to her son before emailing a teacher. Oh, and Morgan got the needle thing from knowing that people take medicine with needles, like shots. Yep, I'm just rockin' this parenting stuff!

Just another day in the parenthood. Ugh.

Oh, and Morgan's teacher, if you're reading this? I'm really, really, really sorry! Again.

Monday, January 28, 2013

We let him BE

Editor's note: I probably don't parent like you parent and that's okay. I probably am not raising my Autist child in a fashion that you can relate to or appreciate, that's also okay. This post might offend some people because they might see me placing a joyful childhood above the rigors of constant therapy. This is also okay. I just want what I feel is the best for my child. Everyone's opinions differ.

People, meaning neurotypical people, will say or ask the silliest things to me. "I couldn't do what you do." Parent my kids? "How do you do this?" What? Parent my child? He's only an Autist and I'm only a proud parent. This is our parenting of Morgan then and now.

I believe that my husband and I are parents with good intentions. That we, as parents, are allowing our son to be the individual Autist he is. We love our son and, at the end of the day, just want our son to be happy. We believe that he is or else he wouldn't laugh and want to dance so much. He dances more than he cries now. This wasn't the way things were not too long ago. Before we were schooled in Morganese. Before we learned about "our autism."

You see, I firmly believe that each and every Autist, like each and every neurotypical, is as much of an individual as are snowflakes. Hokey and novel concept, I know. Shocking for some, even, I realize, but please, be patient with me.

I was once one of those neurotypicals that read and believed the crap out there that seems to express a cookie cutter definition of autism. Scratch that, I don't know if I believed it, because I wasn't seeing it personally at home or in the Autists I began to talk with, see, or hear about. I was so damned ignorant to what was in front of me and so I stopped and listened and looked and took notes.

Morgan stims and has tics. I wrongly thought I should shut those down completely. Not just divert from those that could seriously injure him or cause infection, like his dermatilliomania, but his rocking, humming, peeping like Thomas the Tank, and others that don't cause a damned bit of harm. In school, in order to not disturb others, I encourage his teacher to put Velcro strips under his desk for a sensory fulfillment and it's worked. But when he's home? My son is one big "if you're happy/sad/mad/bored and you know it, flap your hands" and I don't do anything to discourage it. He's not hurting anyone. He's happier now that we've done this.

Morgan loves to script his Thomas the Tank stories. I mean loves. Do I get tired of hearing them? Oh, yes. However, when that little boy asks me if he can tell me a story, I say usually yes. I say yes because not too long ago, he couldn't or wouldn't say more than a couple of words as a sentence. What parent would say no to this? Granted, sometimes I schedule a time for said stories, and I also head him off at the pass when he breaks into one spontaneously as an answer to a question which is unrelated (diversion), but I still just love to hear him talk.

Morgan, as a younger child, would have meltdowns that were, from what I read in psych, textbook typical of an autistic child. They could last for hours. We're talking screaming, kicking, biting... As he's grown older, he's cried. Sobbed, really. I recognize all of this now as his frustration of not being able to verbally express emotions. When he is able to, he doesn't cry for as lengthy periods of time. I would like to say that in this new year, we've had fewer tears, but it's only January. Morgan is a sensitive kid. So, we have tears and we live with it. We also work out coping strategies, it's what we do in order to teach our son how to navigate grade school and, for the future, the world.

This is our strategy now: We let him dance, sing, script, play with trains, and BE.

We're trying to not get bogged down in the therapies, the IEP (we just make sure it's being followed), and the "what ifs" in life. The thing is, we've been stressed out for most of his young life with therapy (with the exception of one year, he's been in at least speech since he was nearly three), with the "what ifs" of life and for the last two years, I've freaked out regularly about IEP violations.

This year, the IEP was fairly easy. No tears on my part and adherence to everything I've asked for from what I can see.

We've worried about what he might be missing out on and that's never going to go away. I worry about his lack of a circle of friends, but honestly, I'd rather him have one great friend than five so-so friends. I try not to worry about what could lay in his future because my child is full of surprises. I try to presume competence. It's what all parents, no matter their child's neurology, should do.

We're focusing on what we have as parents and what he has as an Autist child. We're raising him to be proud of his Autism, that it's nothing to be ashamed of, the same as race or gender. At the end of the day, we just try to let him BE.
Happy Mardi Gras from Morgan!

Monday, January 14, 2013

But He Doesn't "Look" Autistic...

Editor's note: Some of the language and snark in this post may offend, and honestly, I hope it does. It is never my intention for my son to "pass" in society as a neurotypical child or adult, unless he expresses to me that is what he wants. However, all of this comes from my heart and I hope that each of the five people reading this gets something out of it. You know what they say, "If one person tells five, and those five tell five..."

 I am truly hoping that this is the year of Autism Acceptance. That this is the year where people around the country, because, let's face it, the world might be too much to hope for, will accept autistic adults and children for who they are - Autists. Yes, I realize that I am probably being silly, dreaming too big, but what I am really wanting is to never hear "but he doesn't 'look' autistic" uttered from another person's lips ever again. Or at least this year.

You see, sometimes, when we meet new people, they are often confused by this giant kiddo of mine. It goes kind of like this:
They ask him, "How are you?"
He usually will reply something along the lines of, "My name is Morgan."
They will shoot me a puzzled look and try again. "No, your mommy told me that! I asked, how are you?"
Morgan: "I'm in second grade. I like pizza. Wanna hear a story? It was a dark and stormy night on the Island of Sodor...'

I, out of my own preservation of sanity (don't judge, if you allow one Island of Sodor story, you're in for ALL of them), usually tell Morgan "thank you" and have him run along to play. Then I tell the new person, who is usually looking at me askance, that Morgan has autism. I oftentimes get anything from "I saw Rain Man, the Temple Grandin movie, Mozart and the Whale, etc" "I know someone with autism!" or, the worst one, "but he doesn't look autistic." Sigh.

Why? Why say that? Do Autists have tattoos and crossed eyes that give them away? No, no they do not.

Lining things up, stereotyped behavior
Autism, while the neurology does present with different "signs" such as self stimulating behaviors, awkward speech or even no speech, lack of eye contact, and a host of stereotyped behaviors (such of lack of affection, which my son defies- he licks you, hugs you, and kisses), does not really have "bell ringer" symptoms. Unless you're there. Unless you're in the thick of it. Unless you're one of us, a parent with an autistic child. Unless you're an Autist yourself. Or, in some cases, a health care professional without a stick up your behind.

Then, after that horrible question, oftentimes there comes the most horrible for me, at least: "Do you ever think he'll grow out of it? Or be cured? Or pass as normal?"

First, just what the hell is normal? I know, I know, a setting on the dryer. But seriously, have any one of you ever met someone, that after scratching the surface of their existence, you could deem as this "normal" thing? I can't say that I have.

Cured? Yeah, I'm going to leave that one alone or I'll blow a gasket. Just note that offends most Austists and a lot of parents, okay?

On "passing," that I will leave up to Morgan. He's 100% autistic and proud to be so, especially after reading a wonderful book by Landon Bryce, "I Love Being My Own Autistic Self." According to his teacher, he tells his class daily that he's autistic. I love that. To me, this indicates that although he might not know exactly what autism is, he knows that autism is not to be feared, because he is autistic. I want my children to love who they are; it would not matter if they were gay, black, or whatever. To me, as a parent, you teach love and acceptance, not to hate something that you cannot control, such as your neurology.
Reading "I Love Being My Own Autistic Self

I've had arguments with family and friends on if we're doing the right thing in telling our son about who he is. Or, as they phrased it "what." Well, he isn't a lab specimen, he's a boy, an Autistic boy. I cannot separate the Autism from the boy, nor do I want to. To take away Morgan's Autism would take away the quirky little boy I love so damned much. Some of my family members don't believe in his diagnosis. That's okay, they don't live our life. They don't see the struggles, the outbursts (few and far between, but three last week), the horrendous IEP meetings, the bigotry, the stares, the tears- ours and Morgan's, the worries, and then, the joy over the smallest of milestones and when someone just accepts him.

Milestone: Cutting soft foods, after a prompt

Milestone: FINALLY playing with Legos bigger than Duplos

It's okay with me if my son never "passes" as neurotypical. If those that I see claiming to be that way are what he needs to personify, I'll encourage him to "act autistic" as much as humanly possible. Yes, that was sarcasm. I'm not sure how to "act autistic" any more than how to "look autistic."
This is what Autism looks like
This is also what Autism looks like, in our house

Tuesday, January 1, 2013

Year End Stream of...Crap

Today wasn't a great day. For starters, I awoke to find what I thought was chocolate covered cherries by my Christmas tree. I even picked one up. Guess what? It was dog crap. Yep, that's how my super early morning started- with dog crap. Oh well, I thought.

Then, things just went... blah. I couldn't set anything to rights. So, therefore, I decided to hit a mental and physical (I was in pain due to an RA and lupus flare) "reset button." It lasted all of 20 minutes, but you know what my sweet moment was? My sweet, sweet, adorable, oldest child coming in and giving me "night, night" kisses. It was lovely. He thought I needed it. See there, Mr. Baron Cohen? That's called EMPATHY, ya jerk.

While I was laying in bed, thinking of all I needed to do, it occurred to me that I needed and wanted to write. I want to write more in the new year because I enjoy the hell out of it, even if five people read this thing. I ran through my mind all that has happened this year and believe me, a lot has. It would take a novella to describe all that has happened directly to me, but this is about Morgan and my life with him. Actually, I've written a lot about Morgan's major things lately, but I wanted to touch on the milestones again or the ones I've missed. So, here goes...

Morgan, this year, has learned to read! He cracks us up while we drive down the street by reading signs out loud. Sometimes, since we live outside of New Orleans, those signs aren't exactly "kosher," but we still laugh because he's reading. I love that.

We moved this year and Morgan, while he misses TN, loves his new home. It dawned on me not even two hours ago, that in the six months we've lived here, we've had more kids come over to play and vice versa with Morgan than we've EVER had in his whole little life. That's sad, but I'm wanting to celebrate it more. It means that the wonderful people we're surrounding ourselves with (if you're reading this, Mrs. S and Ms. A, especially!!!) are truly great people and that they don't judge our child for carrying the "A-card" like a disease or for being different. It helps that these two particular women I've mentioned are both funny as hell and love Morgan.

Morgan loves his new school. I mean, really loves it. He loves his teacher, has made friends, loves his paras (aides), and has buddied up to a male figure that "puts him to work" to make him feel special. His school is a great place and though we're still working out kinks, he's doing really well.

He's cutting his own food!

He put together his own Lego truck!!! I know, I know, I did that whole post about "what not to buy my autistic child," but my hubby and I caved and bought the kiddos the 405 piece tub of catch in the feet in the middle of the night Legos for Christmas. They begged, okay? Then, the day after Christmas, Morgan startled me with this:

Morgan showing off his "lorry."

I am not saying that this year has been all roses, because it has not. My son has watched me be sick more than healthy at times. I have a disorder that made him think on a few occasions that I was DEAD- that sucks. He still tantrums, but not much.

What I'm choosing to highlight in this current climate of "panic about autism leading to psychotic behavior" (thanks, media!!), are our great moments. We're in a good place. We're happy. We're healthy. Morgan's in a safe and welcoming environment. And man, I'm damned proud of my child.