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.



An Autism Wishlist

Dear Santa and the general public,

For Christmas, there are some things I would like for my son and the estimated 1 in 88 other people like him.

Understanding. I want for people to understand that autism doesn't mean that my son and other people like him are less. They are not unable to feel, they are not unable to function, they are not unable to think. They just do it differently than neurotypicals do. You know what? That's okay with me and it should be okay with other people, too.

Acceptance.  I want for my son to be accepted by his peers, not just his autistic peers (they parallel play just fine, thanks), but by the little boys and girls that you other neurotypicals are raising. I want for Morgan to be able to go to school and not get teased for his monotone voice, his vocal stims, other stims, or love of the demonic blue engine. I want for other autistic people to be able to gain acceptance in society by people looking at them as PEOPLE, not science experiments. Let me know if I'm wishing for the moon here.

Services. We're wasting precious time and money, I think, pushing for cures and looking for causes when we could be looking at the big picture- services. Teaching people (note that I keep putting this in italics?) on the spectrum life skills is important. Funding ABA (Applied Behavioral Analysis) is damned important, something that insurance companies all too often don't do and it's costing a lot of us somethings that we don't have- time and money.

If we're parents, we're freaking out wondering how our children are going to manage as adults in a very cruel world that will not accept our children. Because that world is not likely to change, as evidenced by some of the behaviors shown at the recent Congressional hearing on autism. Congressman Issa was good enough to call this hearing- the first in a decade, but some of his peers, some of the people who spoke, referred to autistic people as "burdens." My son is not a burden. However, paying through the nose for services and going deeply into debt for those services can be, yes.

Congressman Issa, thank you for showing that you care about us and about our people by heading that hearing and implying that there would be more in the future. There has to be. Services need to rendered. Our 1 in 88 can't wait any longer.

Just, please... Let's please, for once, get our crap together in the autism community and have a community! Please?

Warning, going into a rant now...

Why won't some of us <parents and lawmakers> listen to autistic people?! Some of us NTs listen to and applaud autistic self advocates such as Temple Grandin, Landon Bryce, Karla Fisher, etc., for what they have achieved not in spite of their autism, but because of it. When will people get that autism isn't this "burden" (borrowing a phrase here)at all times. I understand that the people I named are so called "high functioning" individuals, but what about other people that aren't? Don't their lives have value? Is there a run on life tickets if autism is caused by something in utero or by something in the environment? Does it really freaking matter?

I think what matters the most, if we are the parents of an autistic child or children, is finding the best way to help said autistic child or children through life and into adulthood. We have to love them. Not treat them like they are our cross to bear in life or society. Not treat autistic people as anything but human beings. Am I the only person getting that we are doing more to help with foreign aid than autism? Am I the only one that sees that helping Egypt's military since 1979 as compared to helping autistic people with healthcare might be wrong? Or am I the one that's wrong? 

**Also, it is incredibly offensive to call an autistic person a burden. I cannot repeat that enough. The burden lies in the way NT people think about autism.


So please, Santa, the general public, the five people reading this... please take some of this to heart. We have "stuff" we need to work on in our community.

Thank you,

Jessi

Ho, Ho, Hummmm

This marks the start of yet another holiday season where family and friends ask me what Morgan would like for Christmas. Yet again (6th year in a row!), I get to tell them "Thomas the Tank Engine trains" and send them a run down of the engines he doesn't have. I know to some, writing about this seems silly. To an autism mom, this makes perfect sense.

Auties have obsessions. Well, most of them do. My son does and I've written about his obsession with the demonic blue train before. My best friend and his god mother, Reese, got him started on the peeping train on his second birthday. I love you, girl. But honestly, I could KILL you sometimes. He really got into the Thomas and Friends brigade later that year and the obsession has never stopped. I mean never. 

Sure, we've had our dalliances with the Cars characters (but really, unless they were lined up...?), he humored his brother (and, I swear, screwed with us) by sort of liking Optimus Prime, he loves books, and the tablets the boys' Granny gave them last year were probably the best gift ever. One thing always holds true: no Thomas = plenty of tears. Last Christmas, there was not a single Thomas in sight under that tree. No tears... for a little while.

I swear, my husband, mom and step-dad (holidays at the 'rents house) tiptoed around the subject and barely breathed for fear of upsetting the delicate balance established in our cosmos. Okay, maybe that was just me. Then, Morgan pipes up with the 'T" word. None of the engines he'd asked for had been under the tree. CRAP. Mom and I had actually looked for the dang things, but none were to be found in either of our small towns and NO WAY was I ordering online at double the price.


He was so upset, that I think it was his Grampa who finally took him to town and pick out some trains. I'm pretty sure that I hid away and cried that day. I felt like a bad mom for not giving my son the only damned thing he'd asked Santa for and for also feeling almost hateful towards my son and his engines. I think I just wanted for Morgan to appreciate what he had, but in his mind, all he could focus on what was he didn't get- the only thing he'd asked for. Actually, looking back, I'm a horse's ass and expected something that was entirely unreasonable. I put myself into the "those people" category. Even still...I really want to burn those freaking engines.

Then again, I also feel intense toward those that "don't get it." The "those people" category. Let me lay this out for you.

You, there! That box of K'nex you gave my kid? Either his little brother plays with it (the "acceptable" way- actually building things) or Morgan uses it as "cargo" for his trains. That is, after he's done happily running his fingers through the box of pieces over and over again.

That super complicated (by this, I mean over 25 or 35 pieces) jigsaw puzzle you gave Morgan year before last (or hell, the one I gave him for his bday last year- made for age 3+) because it was "cool and age appropriate?" Yeah, the dog or Bailey probably chewed it after Morgan got frustrated and chucked it on the floor or under his bed.

That gazillion piece "age appropriate" mad scientist kit? Oh, well done and seriously awesome. However, my son couldn't read at the time and still has great difficulty with comprehension. I love that your son can. I'm not even jealous anymore about that (well, not most of the time). Morgan has a lot of fine motor skills deficits and handling all those tiny pieces was so frustrating, he threw the damned thing in the trash before I had the chance to do so or to help him set it up and take pictures.

I get that unless you're there, you don't know. So ASK.

My point, all five readers, is that if you have someone on the spectrum in your life, throw the stupid rule book out when it comes to gift giving. Shut your mouth when the child is still into something that he or she was into five years ago. Don't assume, you know what that does.

Ask the parents what their child would want! Please, don't be offended if they ask you for a return receipt. We are raising completely different children than you are and frankly, if it comes down to making our kids happy or catching a sharp object in a foot due to an ill thought out gift, I think you know which we would choose- the same that you would.

I didn't write this to piss anyone off. I am writing this to offer my own experience and perspective. Holidays can be overwhelming for anyone. But when you're on the spectrum or have a kid on the spectrum, and are trying to manage any of the things that go along with the holidays... it gets, well, emotional. At least it does for me.

Remember what the holidays are about for kids. They could give a rat's behind about half the things we do. So, in that light, stop sweating that little "Age *+" down in the corner, buy what the kid likes and put a smile on the child's face. It's freaking Christmas. Oh, and when all else fails? My kid loves gift cards.

Mostly smiles, some tears, no jeers

The title pretty much sums up what yesterday, the Louisiana Autism Speaks inaugural Walk was for us, as a family. Morgan had the greatest time! We had explained to him what the walk was about, leaving out Autism Speaks' mission about finding a "cure" for autism. If we had done that, he would have balked outright. He kept looking around and asking me "are ALL of these people autistic?" It kind of cracked me up. But after a while, he just, well, let go.

Pre-walk

He became MORGAN. The Morgan that very few people really get to see. The one that toots like a train, grumbles and grunts low in his throat, tells Thomas stories non stop, and had a blast. He played with so many auties, it was just wonderful. All of those people, being themselves, in an environment where they could be themselves.

Walking and SINGING!

I met a lot of lovely people yesterday and witnessed wonderful, sometimes heartbreaking, tender moments. I thought I might spend my day crying. For one, that a Walk like this is even needed breaks my heart a bit. But it breaks my heart no more than childhood cancer, adult cancer, AIDS, etc., walks do. It's here, we have to deal with it, don't go all Chicken Little with it, and COPE.

 
You could see "it" in a lot of our faces. I say "our" because my husband and I captured it for both of us, completely candid- the LOVE. During the singing of the National Anthem, there was a mother and her daughter standing in front of us. The daughter, who must have been nearly my age (almost 30), was flapping her left hand and starting to make a keening sound. I believe she was starting to have sensory overload. She was profoundly autistic and had her left hand's fingers arched back at such an angle I honestly wondered how they didn't break. Then, her mom did "the beautiful thing." She took her daughter's hand (the left one) and converted the flapping and arching fingers into a waving motion. The autistic woman went from looking like she was going to have a meltdown to looking as if she were directing a beautiful concert; a smile came upon her face. I cried.

I walked up to the mother after the Anthem was over to tell her "what you just did for your daughter was beautiful. The world needs more parents like you." She, too, had tears in her eyes and said, "We can't help but love them, can we? They're only our children once." That statement alone made me tear up even more.

"They're only our children once." How true. Morgan and his daddy.

I love my son, no matter what, as do (I hope) all of those parents there yesterday. But you could see another "it" in a lot of their faces: the agony, the stress, the pure anger, almost malice, and the "I'm not coping, I'm going through the motions of having an autistic person amongst me" in their faces. Thing is, a lot of those parents had kids that seemed a lot like my child. These weren't the parents who had kids in strollers at the age of 10, who had non verbal children- they had high spirited, highly intelligent children that wouldn't, for the lack of a better term "shut up," lol.

That's what killed me. The ones who seemed, to an outsider, to have it "the worst" smiled the most.

My family and I walked for a little boy who loves trains. He was singing his Thomas the Tank Engine songs, telling the stories, talking about anything and everything, petting the dogs people brought, trick-or-treating along the path (great idea, Autism Speaks!!), tooting  and beeping, and NO ONE CARED! I loved it.

With the boy I walk for, walking with me

The nice man who took this chopped off Bay's head- whoops.

I had to laugh at one woman who crawled her kid's butt for slapping one of the AS signs. He was clearly stimming his happy little behind off and I had already shooed him away from the sign, as I was taking pics of all of the signs. She apologized for her son's "behavior" and I outright laughed saying, "lady, if there is a place and time for our kids to stim and be themselves, it's today and NOW!" She smiled uncertainly and walked away.

My big embarrassment (for me, as a parent, not a member of the autism community) was that Bay was acting like such a jerk,  no less than 13 people asked me how did I deal with have two auties. Do I medicate him, and my personal fave "how long has he been diagnosed?" I had to explain to those good people that as far as I can see, Bay is a NT, but very jealous of his brother's ASD. We're going through a rough patch right now and he was really showing his behind yesterday.

Pre-walk, bay getting a lecture on how to behave. Already had five people ask about his "autism." I actually told someone he just had "gingeritis."

All in all though, yesterday was beautiful. Cold, but beautiful. I think I saw more of humanity than I ever dreamed existed in the world. The best part? Morgan was "with his people." Love that boy.

Thank God this year was different

Saturday marked the day I gave birth to a big, bouncing, 10.5lb baby boy. My first born. My Morgan. His birth marked the start of a journey I could never have predicted, one with more ups than downs, more twists and turns than straights and narrows, and more joy than heart ache.

However, this particular post is something painful for me to think about and even more so to write about. The reason I do so is because, as a mom in the autism community, I believe, it is something we've all been through to a degree at some point- exclusion of our child.

As Morgan would say, let me tell you a story...

Last year, we planned a huge party for our great kid. I mean HUGE. Sixty invites huge. I was coaching soccer and Morgan wanted to invited ALL of the children from his classes (he switched for math and reading, so there were three classes total) and the whole soccer team (ten kids). Three of the kids from the team had valid excuses for not coming. The rest, I'll never know. His classes? I have no idea. All I know is that we had about 20 RSVPs, I  prepped about 50 goody bags, and decorated my ass off.

Then came the day of the party. We prepped food! We stuffed and hung pinatas! Morgan stimmed SO hard, he was that excited.

Then two guests showed up. With the exception of a couple that was invited for the sole reason of having a preschooler (i.e.- entertainment for Bailey... plus, the drunken wife made an ass out of herself by telling anyone who would listen "people didn't come because they think he's retarded?!" yeah, wanted to slap her- especially when MY SON heard it)... that was it. Morgan, bless his heart, never noticed until it was time to open presents and a sweet little boy piped up "shouldn't we wait til the other kids get here?" After that, we ALL had to work hard to distract Morgan.


This year, however... this year, was what I wanted for my son last year. The doorbell wouldn't stop ringing for an hour. Kids were everywhere! Anyone who came and brought Morgan a present, gave him a Thomas the Tank Engine present! Morgan was beyond thrilled.

I reserved the movie theater here at the complex, knowing he would get two movies for his birthday,  and we had kids in there from 6 until 10. Then, the kicker:  Morgan had a SLEEPOVER. His special friend, B, her brother, D, cutie little Z, and Bailey were all crowded into the back bedroom watching Peter Pan. Well, Morgan was the only one up after about 15 minutes, lol.

I'm just thrilled that my son finally got a birthday he deserved. With kids. It went above and beyond my wildest expectations. I love humanity, when it shows up.

Sticks or stones?

The old saying, "sticks and stones may break my bones, but words will never harm me" was obviously thought up by an asshat parent trying to comfort their child.

Sticks and stones, while they leave there visible marks, have a way of traumatizing yet making someone angry in the NT and Autie world. But those marks fade, they always do, even if scarring occurs. I'm not saying that assault in any form is acceptable, but let's face it- most of us would probably rather take a literal slap than a verbal one. I would.

Morgan seemed "fuzzy" this afternoon. He was hyper- for him. He couldn't focus at all and was over emotional, even by autistic standards.

I had to run over to a neighbor's apartment to print something off for his homework and her son came running in to inform me that Morgan was crying, a LOT, because the kids wouldn't play a game of tag. The neighbor and I, being adults, just said, "play the dang game and be a big kid- set the good example!"

When I came out to the stairwell, the kids were all in a huddle around Morgan, chattering like magpies. I knew that would set him to crying. Well, he already was- a LOT. My "mommydar" went off. I knew something wasn't right.

B, a girl that has become Morgan's bestie lately, piped up that Morgan had been bullied by two boys at school today. God, I felt my heart just... squeeze. With all of the kids around us, I coaxed out what had been bugging him (three cheers for him even telling, I think he felt encouraged due to the other kids being there). Apparently, some little jerks named Z and let's call him B told Morgan that he's fat. "Lard ass" is the word Morgan later used. That is NOT a term I allow in my house. Derogatory terms referring to weight rank right  up their with gay slurs and racist terms.

After Morgan confided in the crowd, I pointed out that those morons aren't his friends and that he needs to stay away from them. Also, that everyone standing there IS his friend. The kids were very quick to chime in (they're super sweet, honest to goodness great kids!). Then, J, the comic in the group, raised his shirt, grabbed his tummy and shook it yelling "Morgan, THIS is fat!!" J does have a bit of chub. Funnily enough, he's the exact same size as Morgan, but six years older!

I think this has been going on for a while. Morgan has been making comments since last month about being fat. The child stands 5'1 and weighs 110lbs. He's a big kid! Overweight some, yes. But geez. HE TURNED DOWN CANDY TONIGHT, PEOPLE!

My point in all of this is this: I've been on a tirade lately against the word "retard." Begging, ordering, asking, etc., people on Facebook, Twitter, in my everyday life to just eliminate it for fear that (a) it'll reach Morgan's ears, (b) they need to get a flippin' thesaurus and another word, anyway and (c) why use it?

Don't people understand that words hurt? I know that I still sting every time I think of my former stepfather telling my mom that I was "fat as mud," "could be pretty if I laid off the food," and a zillion other things. I know that my sister still hurts from the godawful crap I said to her about her speech and gums (Sorry, Riah- I really do love you and you are a beautiful person... hate that I gave you that phobia about closed hands and spiders).

I lay awake some nights, like most parents and mentally replay my day. More than 80% of the time I can come up with something that I've said that will likely scar one of my kids. I'm ashamed as hell and yet, it's probably small beans compared to what other parents do to there kids. This is in no way excusing my own behavior. I've gone on tirades that would make Marilyn Manson blush.

I just want my 10 readers to ask themselves... would you prefer your child to be bullied for something they cannot help (like autism), be made fun of for their weight, or be physically hurt? Of those things, which do you think would hurt worse? If it has happened to you, what are your thoughts? 

Our Autism These Days

Since my last post, we've packed up the family and moved from Deliverance, TN, to the greater New Orleans area, LA. We. Love. It. Here. 

Morgan is not as ostracized here for his differences as he was in TN. Maybe it's because in the land of odd, he's not so damned odd. Or maybe it's because we're living in an apartment complex where a whole bunch of kids (some his age, some younger and some older) have embraced Morgan and protected him from the very few bullies that roam the complex.

In his class, he actually has four other auties around him! You know what that means? A para (paraprofessional) is in his classroom at all times giving the teacher - and the auties - much needed support. Morgan even gets his speech in class, thus not being singled out.

Morgan is HAPPY!

Best part about living in Louisiana? With six months of residency under our belts, Morgan will qualify for something that is nonexistent currently in TN- autism insurance! I commend my friends fighting for it still, but state senators there told my husband point blank that it would not happen, period. I hope that this will soon change, as many people would benefit from autism insurance reform.

This has been a great change for our family. My own outlook on autism has changed.. While I never really have, I don't want to cure my son. Or fix him. I want to help him succeed.

Some might ask why I don't support a cure... well, if I were to cure Morgan's autism, I would being "curing" my son of everything that I hold dear.  The things that I would do with away- such as his lack of friends, are what make him Morgan. And... He's the friendliest kid I've ever met, but society deems him "weird." So he takes things literally, talks too damned loud, and stims like crazy over things that I cannot possibly understand. So WHAT if he likes Thomas the flippin' Tank Engine (still) at the age of almost eight? WHO CARES? 

Why would I want to cure my sweet, caring (squash that not having empathy thing, people- my kid has it in spades!), quirky kid. We got lucky in a lot of way on this spectrum of ours. Morgan is verbal, in a Yoda sort of way. He's a whiz at math. He has an ear for music. He's just... different from how society wants him to be.

You know what? My view on autism has changed a helluva lot in the year. When I began this blog, I was mad as hell that someone had finally labeled my kid with something that I viewed as nearly a death sentence. I was so very ignorant and wrong. 

Autism, in so many ways, is a beautiful thing. I wish more people would see it as I do. Sure, sometimes I flip out and stay awake worrying, like a lot of autism parents, but not as much as I used to. There is no light at the end of the tunnel- yet. However, there are a lot of colors in my kaleidoscope.