Thursday, December 6, 2012

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,


Tuesday, November 13, 2012

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.

Monday, October 29, 2012

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.


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.

Monday, October 22, 2012

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.

Wednesday, October 17, 2012

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? 

Wednesday, October 10, 2012

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. 

Sunday, March 25, 2012

The Junior Advocate

As I've mentioned before, I worry- a lot. I worry about Morgan 24 hours a day, seven days a week. If I were to be given an extra hour in a day, I'd use it to worry even more. However, I'm proactive in my worrying sometimes. Some people call this crazy, I call this being an advocate.

I get the whole family in on this act, down to our toddler, Bailey, or Bay, for short. Bay is a real spark plug. He knows the basics of autism and Asperger's. People, who shall remain nameless (you know who are you are), think that I am over burdening a child that already has and is going to have the "heavy burden" of an older brother that is "different" to help guide through life. They think that I give my children too much information about autism and life in general. I call bullshit. That's right, I said bullshit. Allow me to enlighten.

Bay is an exceptionally bright four year old. He already can spot differences in how he operates from how his brother does (interactive play, imaginative play, dressing up, making up names for himself, appropriate answers to small talk, no stims). It saddens and frustrates him that his brother doesn't play with him like he wants Morgan to. It does the same for me and my husband. Tonight when it was brought up to me by Bay (for the millionth time, I might add), I decided to break it down and be deadly honest with my son.

You see, Bay is about to enter preK. He's nervous about the other kids being mean to him like some kids have already bullied his big brother (thank, bullies!). I told him, as bluntly as I could, that bullies, while they are everywhere, aren't as likely to bother him as they are Morgan. Bay doesn't do things "differently." He's neuro typical. The most he might get teased for is his slight speech impediment and ginger hair. Oh, and the kid loves pink and purple. But other than that, Bay's 100% neuro typical, all around American, boy.

I explained to Bailey that God makes all children special. I mean, really, really, really special. However, he made Morgan with an extra dash of special with his autism. Autism wired his brain differently and makes him see the world in a different way, takes away his ability to filter sounds, find patterns in things, notice things that other do not see, and most importantly, in a social way, it hinders Morgan's ability to act like other kids (in my case, I silently scream thank God when I go to the grocery store and observe other people's offspring). I told Bailey that one of Morgan's special talents include echolalia, which is how Morgan can spit out phrases of a movie or the actual whole movie when they're playing. However, I asked Bay if he's ever noticed that when someone asks Morgan a question, Morgan might answer with a movie phrase that makes no sense. Bay answered in the affirmative. That, I told Bay, is echolalia. That, I told him, is an ugly side of autism, according to the looks we get.

Another one of his brother's talents is building. Morgan loves to build- train sets only. This irritates Bay to no end since he wants to builds lots of things. I told Bay not to take that away from his brother by making Morgan feel wrong for that. Morgan already got teased, you see, for his love of Thomas the Train and all things train related at school and only at home and in his homeroom does he really get to express that love. Realization dawned on Bay. He'd been really mean a lot to his brother, without really realizing it. I've always told him "no teasing or hurting your brother."

As I explained to Bay that, because of things related to autism, Morgan has to be taken out of his regular classes for therapies and resource, something that Bay will never have to do, Bay looked sad. He asked, "but why? Why does Morgan have to do those things? Can't you tell them to let Morgan stay in classes?" I told him, "Baby, I signed papers saying that Morgan has to be there; those extras help your brother learn better. The classrooms are too loud and the other places are giving him skills so that he can be more independent one day." "But I won't have to do that?" "No Bay, you'll be a regular student, learning reading, writing, math, geography, and going to recess- when you're good and do your work."

Then the hardest part... Bay asked why his brother didn't want to play with him a lot. Morgan can usually manage maybe 15 minutes, tops. After that, he needs what I now recognize as a sensory break (soccer practice and games take some slick maneuvering). I've tried explaining it to Bay before, but he's either been too young or ignored me. I explained tonight in the school terms that although he wants to, Morgan can't take the overstimulation and the noise. It sends his brain into a tizzy and causes it to crash, like a computer. Bay got it. He asked what he could do to help his brother.... and that's when I explained about God making HIM with an extra dash of special, too.

As best as I could explain to a four year old, I laid out what I expected from my younger son. I told him that some day, he might feel like the older brother. He might feel like he is guiding his brother through life and that's okay. It might not feel fair, but that's why God gave him that extra dash of special. That dash is made up of compassion, love, and all good things. It is going to help him and Morgan. That when he sees his brother getting teased and Morgan's not understanding it, Bay is to stop it ("yeah, I'll stop those bad guys!"). That when we're in public places and he sees Morgan wandering, to hold his hand or to call out to him. When Morgan's needing space, give him space. That when someone asks, tell them, "My brother has autism, and you're issue is?" That might be wrong of me, but Bay already sees me doing all of this and is my own personal mynah bird, you think he's not going to copy me?

I pointed out to my younger son that Morgan wants lots of friends, and even has a few. He asked me, then, why didn't I have a lot of friends. Hmmm, I thought.... Well... I told him point blank that I'm very protective over him and his brother. That I can't take people being thoughtless of either of them and treating them like crap. Case in point, the "friend" that stupidly told me that she imagined shopping with Morgan must be like shopping with a two year old. She smiled as she said it. It was like being stabbed. He's one of the best behaved children I've ever met and sweet, to boot. I told Bay about that and he nodded and agreed that the former friend was, indeed, mean to him, too.

My point in all of this is that if your child on the spectrum has a sibling, it's never to early to turn that child into an advocate for their sib with autism- and the thousands of kids similar to them out there. Your NT child will one day grow up as all children do. Your child will hopefully be compassionate towards everyone they meet, but especially those in the special needs community. I hope that my own ginger haired younger child will see one of his classmates in gym, one that acts an awful lot like his brother and is getting teased, walk right up to that kid and announce, "Hey, you overstimulated? You want a friend? I'm your guy!"

I'm raising an advocate, not a jerk.

Tuesday, February 14, 2012

Love & the Aspie First Grader

Morgan had his first real Valentine's day, I think. It was great, for me because it's been a hallmark in a way. Morgan and I had our first real, stretched out day of conversations. Real, reciprocal conversations. It took a lot of effort, but some things clicked into place and it just worked.. and today, when he got his cards back, it was even better.

 It was the first time I picked out the type of cards that I knew he'd like - that had appropriate sayings that he would "get," for the most part. We sat down with a list of the children in his homeroom and suddenly, Morgan talked. He would see the name, repeat it and tell me all these funny little quips as he decided if a boy was a "U R Awesome!" or "Cool" (just a note, Morgan refused to hand out most of the "U Rock" cards because that made zero sense "A person can't be a rock, Mom, that's weird"). Every girl had to be either a "Be Mine" or a "U R Sweet" and the color coding meant something to him as he told me what was special about each one. Scientists say that Aspies/autistics aren't supposed to always notice the world around them, but I beg to differ with my exhibit A, Morgan.

He's never told me any of this stuff before because unless I ask a direct question, he cannot give me a direct answer. Like in the car today when I asked if handing out cards had been crazy, Morgan piped up "yep, but I did really well! I didn't mess up once, Mommy, I was a good boy and no one got the wrong card!" I didn't know that he'd been nervous about messing up because I hadn't thought to ask. Morgan wouldn't think to tell me.

He made sure to include his homeroom teacher in his cards, his vice principal, his resource teacher, his brother, his daddy, and me- all unprompted. Maybe it's because he's seen me make out cards so many times, but how else did he know to do this? I love getting a card, not picked out by his dad, addressed by Morgan and signed by Morgan because he at least knows it's what's supposed to happen on this day. He's picked up a social cue but at the same time, Morgan's always been one of the sweetest kids I've known- period.

The funniest moments in all of this? Morgan's spots of pure lack of filtration. On Saturday, he and I went grocery shopping together- a rare event. Morgan saw a child misbehaving horribly and the mom was saying, "I'll beat your butt when we get home!" Morgan being Morgan pipes up, "just do it already! Mom, that baby's a brat!" We would be walking down an aisle and he'd just be chattering away about whatever was catching his eye... We're working on that inner voice thing...

A little girl in his class gave him a sweet, hand drawn Valentine- with Thomas the Tank engine on it! She's his friend, obviously knows his love of the blue terror of the rails and my son tells me when, when I ask him what he said to thank her, that he told her she had "left off the coal car on accident." ugh... I'm hoping this girl just smiled like Morgan said she did.. we had to have another talk about that inner voice thing. Dating's going to be hell, I can tell.

Oh. and Morgan announcing to me that God, does indeed find him special. Yep, it's true because the Valentine Card that J- gave him says so. And that card has bunnies and a kitty, all curled up to show diversity, I'm guessing. Best card ever.

Sunday, January 22, 2012

This is not a happy post

Sometimes I feel like I suffer from multiple personality disorder. One side of me wants people to recognize Morgan as having Asperger's/autism (trying to get used to saying just autism in case the changes to the DSM's definition go through- thanks for screwing over THOUSANDS, asshats!) and accept him as just a boy- with some different abilities. One other side of me wants people to just think that Morgan's a neurotypical child that's slightly quirky; he just likes to say weird things, lick around his mouth repetitively, find patterns in things, LOVES Thomas the flippin' Tank Engine, and exhibits signs of autism, but ASD isn't the case- he's just quirky and quirky is GREAT! Bullshit of me, huh?

I have these imaginary steel bands wrapped around my rib cage that make it difficult to breathe or relax. Whenever I get stressed/panic/anxious, somehow those bands tighten just a bit, sometimes more.  I stay stressed- constantly- and I'm prone to anxiety attacks in some crowded places or when I'm well, stressed out. The reason for some of my anxiety or stress? Well, it's hard to put my finger on it...
  • What if Morgan never reaches grade level in reading? What if he falls through the cracks?
  • What if I'm not a good mom? Am I missing something? I must because my kid didn't get a diagnosis until he was SEVEN and I KNEW something was wrong, but I let other people tell me otherwise- including my damned pediatrician.
  • What about Bay? I have him at home during the day and not in a preK program because, to be blunt, we can't friggin afford it. I mean, I can teach him, right? Those workbooks and worksheets will prep him for school, right? Playdates with other kids and outings to the park are okay, right, since I'm socializing him? Quality time with me is important, right? If I get him in speech soon for that slight impediment, he'll be okay and I'll feel like people aren't looking at him with suspicion as if "your brother's autistic/weird, what' wrong with you," right?
  • What if Morgan never meets a girl that looks past any of this crap that can be autism? What if he never gets married? I know this is a while away, but I worry about it, though I have no control over it.
  • My insurance has approved Morgan's therapy finally, but who exactly is right for him? When are we supposed to take him? In the afternoons? During school times? And how in the hell are we supposed to pay $40 (technically, it'll be more like $60- $20 for gas each time) a pop when we worry about splurging on dinner out? 
  • I just bought new shoes yesterday, dressy shoes. Shoes I technically needed (okay, I wanted them- so shoot me for wanting pretty red heels) to attend a function. I was excited about them, they're perfect and I got them on sale. Know what woke me up at 3am? The knowledge that the money I spent on those shoes could have gone to Morgan's therapy fund.
  • Am I doing enough for Morgan at his school? Probably no on that one. I don't volunteer and frankly don't plan on it unless it's something for his homeroom class.
  • That mom of the boy from Morgan's class we ran into yesterday, the one that Morgan really likes and always talks about, she took my number after the kids played at Chik-Fil-A. She said she would love for Morgan to come over, was she for real? I mean, really? Don't toy with my emotions, lady.
  • Does Morgan know how proud of him I am? I tell him, but when I push him to try harder, does he realize it's to help him reach his fullest potential? To get him out of a lower level class?
  • Why can't my child read a calendar? He 'learned' how to in math class... he can't do it though... which brings me to my next worry...
  • Is Morgan cheating in school? He admitted that he looks at other kids' papers sometimes when he doesn't know the answer. I don't know if it's for tests or what- reading tests are proctored in a room where he's the only kid and spelling tests he nails because he KNOWS the words. I know he gets stuck on word problems in math (deficits in reading, got it), but OH MY GOD. Cheating? My kid? Thomas and I have always told him how bad that is! I know he's not doing it for numerical equations, he does those right in front of me. But other things? I now have to contact his teachers... shit.
  • Morgan told me that he doesn't want to be "dirty Morgan" anymore and has to take more showers. He showers daily, sometimes skips a day if he's running late. What the hell? Who called my kid that? He won't say...
  • People think I've gone insane due to my rants on the word retarded... is it that bad that I want to punch those that call me oversensitive? I'm not oversensitive, I just want to punch people, that's all.
  • Morgan is overly affectionate. He loves to hug, kiss, cuddle, "pet" (have his head/back rubbed- he also tries doing that to other people, but sometimes comes off as kind of creepy, lol), hold hands... when is this really going to go south for him/us? I think it might have already on the boy front since he's brought home the words "fa***t" and "gay" and I'm pretty sure they didn't get tossed out loosely. Or what if he tries to "pet" some girl and she gets scared due to his size? He wouldn't hurt a soul, especially a girl, but my God... So we're doing behavior modification- a lot.

So, as you can read, I'm a worrier. I'm a warrior for my child, too. But I worry A LOT. I worry so much that, at times, I literally get sick. I can't stop it even though I know it doesn't help and is in fact detrimental to  Morgan (and Thomas and Bailey). But when so much seems unknown and out of my control, I don't know what else to do.  I try to be proactive about things in my life, but look at the list above me, a lot of these things are more of  "wait and see" kind of affairs rather than immediate "let's kick ass" types.

All I know is that I get exhausted/energetic and angry/sad/happy all at once and most of the people closest to me don't seem to get it. My friends who have NT children don't understand why I have mostly autism to talk about- that's my life, get with it or get out of it. My family, I think, sometimes feels the same way. I vent on my blog so I guess the six that read it know afterwards, but until you've walked in my shoes...  don't judge me or assume you know what's going on in my head- you don't. Autism is/can be a frightening place for a parent- unless you're in my Spectrumville, you're probably not letting it keep you up at night.

Summer 2008 "summer of hell", photo by Mariah Bibbey

May '07 pre ASD symptoms, photo by Mariah Bibbey

Tuesday, January 10, 2012

As a side note....

Morgan's teacher brought up to me an interesting scenario that had taken place in the classroom last week. A father of one of the students had brought in a volcano set to erupt (thrilled the kids) and as he was showing it off, a tiny black piece popped off and flew across the room. Naturally, the whole class, minus my kid, went looking for it.

I say naturally because Morgan was more fixated on studying the mechanisms which make the volcano work. Mrs. M said that Morgan looked around him and found a green component, same size and shape as the black component, and handed it to the Volcano Dad.

Volcano Dad exclaimed, "What a smart boy! This will work!" It did. It made the volcano go off without a hitch.

How did Morgan know? How did he notice that thing? Why did he notice? Does his AS make him note details in a room that no one else would ever think of noticing? I think so.

Mrs. M said that the class cheered for Morgan and that made him very happy- for a minute. Then he "peeped" (Thomas the Tank Engine style) and tried to talk Thomas, which is what he does whenever he's nervous, excited, or just plain doesn't know what to do. She says that she asked the school shrink what to do about this behavior, since it's really not harmful, but it is "odd." She, Mrs. M., loves it because Morgan can use his echolalia to tell her full stories with huge words in great detail. The school shrink gives a resounding "NO" to this, as do a lot of backassward leading psychologist and psychiatrists. It's as if they believe that children who seek comfort in the familiarity in their part of the spectrum of stims (the autistic hallucinations I've heard about and would honestly love to see - they sound beautiful, the comfort zones, the fixations on spinning/spinning objects, etc) will somehow damage them. I disagree- let them do it. It harms no one. It comforts them and frankly, if kids are teasing them, drag those children's parents in and have a meeting to ream out the parents for not teaching their kids to not make fun of a differently abled child.

And another thing, if one more person refers to my child as handicapped or special needs, I'll scream! When I think handicapped, I see the placards in my mind and think literally physically handicapped. My child is neither of those. A good portion of the kids on the spectrum who are being mainstreamed are in the same boat- so knock it off. Special needs is definitely a semantics issue for me, but I believe that every child has special needs- some more than others. Give me "differently abled" and we're good. In a day and age of people trying to be PC about race, gender, and sexuality, why can't we be more PC about DSM labels?

Setting expectations

Morgan brought his report card home today full of wonderful news! It shows what we already know- that he's making progress in leaps and bounds in a lot of areas, and progressing slowly but surely in others. He actually brought home an "E" for excellent in math!

What tickled me the most was his IEP (Individualized Education Plan for those that aren't familiar with the terminology) report and the social skills section of his regular report card. His social skills have gone from Ns to Ss!! From 3s (BAD) to 1s (GREAT)!!! His IEP report says that he's on track to complete his goals by the end of the year and, in two cases, he's gone from a 2a (no progress being made) to a 3 (your kid is surprising us, kicking ass and taking names). All the comments on it indicate that he is doing great and believe me, his teachers don't often mince words.

 We've been having the issue of Morgan rifling through his folders in the afternoons before I pick him up for some time now. It's annoying due to his taking things out of place and not putting them back. Since he changes classes, I need to know what came from which class, especially if it needs to be reworked.

However, Morgan, no matter what I do, still goes through his folder- especially on test take home days... For instance, last Friday was spelling test day. He comes home- no test. We ask him how he did and he got visibly agitated and began to stim saying, "I'm sorry, it was bad. I threw it in the trash!" How odd, we thought. We'd reviewed with him as usual and he had the words down cold. We asked the score (his thing for numbers means he memorizes a lot of his scores) and he answered "69," this worried us. Thomas went back to the school, where Morgan's teacher caught him going through all four of the trash cans in her room. She laughed her butt off about that to me. His test was recovered and the actual score was a "92." Now, my son HATES turning ANY test in to me or his dad unless it's a 100 or above for some reason. What in the world? Out came a number line with divisions for what's "good" and what's not.

To elaborate more on the perfectionism... Morgan keeps telling me he has writing assignments for Mrs.M, his main teacher. No biggie, I expect him to do those. I look at the papers he's bringing home and I see her red pen where she's written out his words he's wanting to write and he's brought home the specially lined paper for those writing assignments. Thing is, the yesterday, Morgan had an odd sentence that made me stop and think. It was "Respect means no pushing and for you to be fair." I asked Morgan what this was about and he said it was a write off. I freaked a bit and left a message for Mrs. M at home. He did the assignment- neatly- and went about his business. I talked to his teacher late last night and she told me that he never has homework from her. He goes to study hall to finish work. The sentence was okay'ed by her in class as an assignment for a segway into a civil rights lesson.

Morgan's been bringing these things home for practice! He complains bitterly as I'm getting frustrated with him, he wriggles around, stims, cries, etc., but knows that he doesn't HAVE to do these assignments. He picks up extra paper and decides to do all of this on his own, just to get better. He knows he gets graded and wants to get the best grade. I know all of this because I sat down and asked him today. I asked if he knew about the lack of assignments. He said, "But Mommy, I'm always going to specials and I never get to work on handwriting. I need that handwriting grade!" 

Every time I think that I set reasonable expectations for my wonderful kid, he blows them out of the water. I understand that he's doing the same at school a lot of the time, too. Which is great- it keeps us all on our toes. Lately some people have told me that I'm selling my kid short and that hurt. I don't feel like I do because I know my child is highly intelligent and know that he's going to surpass any expectation anyone might have for him. It's just that I think that the route that the experts, family, and some friends think that Morgan (and I, along with him) should take might be wrong. And so, this roller coaster ride/learning experience called Autism and my son continues.

Wednesday, January 4, 2012

On being "one of us"

I noted a topic on an AS discussion board  tonight entitled "What's the best/worst thing about being an Asperger's parent?" All I could think, in my own overly analytical way, was "Am I supposed to give a sentence or novella for each part?" So, since I'm incapable of short answers...

The bad & ugly side

I'm not going to lie- Autism can suck. I watch my child struggle so hard that he's near tears (or in them) just by trying to complete a simple task- like learning to tie his shoes, which he still has not learned. Damned fine motor skills.

Seeing other kids make fun of my kid when he's really trying to play with them... and seeing those kids' moms allow or even encourage it. The worst part of that? Morgan sometimes won't even notice the teasing, name calling, or that crap. What he notices is that the kids don't want to play with him.

You notice why the kids don't want to play with your kid. My son is literally the nicest person I know. He drives me up the wall, but I'm his mom. However, Morgan talks constantly about his trains. I mean, constantly. Kids his age usually have more than one thing to talk about extensively.  He's recently latched onto Transformers and Angry Birds, so there's hope that one day Thomas the flippin' Tank Engine's boiler will burst for good in our house, never to reappear.

As a parent, anytime that autism is mentioned in conjunction with your child, one of your initial thoughts is "I can't die." It's horrible. You can't die, you have to live one day longer than your child because who is going to look after your child the same way you do? What if, God forbid, you die while your child is young? To a neurotypical child, it would be horribly traumatic, but how would an autistic child adapt?

I can't get sick or Morgan gets upset. True story, and a very hard thing to deal with sometimes. Morgan spent the first two and a half to three years of his life with me in fairly good health. The last four have been awful. I have some autoimmune disorders that cause me a lot of pain when they're not in remission. When Morgan knows I'm in pain, he cries at school. He worries about me. He misses me. It makes me feel like the worst mother on the planet.

When your child is stimming, you can be driven to the point of absolute insanity.

Not every Autistic is like the guy from Mozart and a the flippin' Whale, okay? Just like not every Autistic is like Rainman, got it? Not every frickin' person on the spectrum is a savant! So quit telling me that ALL Autistics are highly intelligent or that ALL of them are savants! Quit generalizing about crap you don't know about!

IEP meetings....

Insurances companies- like mine, who don't cover any therapies unless they can be proven restorative in nature before the onset of therapy. I wish I was making this stuff up.

Don't assume because autism is mentioned that my child is a moron, either.

Best things

My son can manage to entertain himself for hours on end, no kidding. I rarely hear "I'm bored" come out of his mouth and he actually seem to mean it. He's always been that way. Even as a baby, Morgan amused himself by figuring out complicated locks, puzzles, pestering the cat, or locking Mommy out of the house- that wasn't fun. Seriously, my less than a year old brilliant child dead bolted the door behind me without warning during a freezing downpour. I was in my jammies. Not cool man.

Being the parent of an Autistic make you appreciate the details in life that you wouldn't notice otherwise. Be it a speck of mud on a window, a faint whistle in the wind, or a cloud that looks like Bertie the Bus from Thomas the Tank Engine, at least 1,000 times a week there are moments when Morgan points things out to me that I would have never taken the time to stop and notice. He finds patterns in everything and that's incredibly, well, cool, for lack of a better term. That he can find patterns in random forms and find it beautiful is striking to me because as an artist, I crave composition, too.

Having an Autistic for a child makes your other child instantly compassionate towards people with different abilities. The other night, we were in a crowded bookstore and without being told, Bay grabbed his brother's hand to guide him along in order for Morgan to step out of the way for a lady in a wheelchair (he spaces out sometimes- kind of like sensory overload). Most four year old kids would stare at the woman or point, or wonder aloud how she got in that chair. Not Bay. No, my younger son somehow always gravitates towards the children that are in leg braces, have developmental delays, autism, etc., whenever we're out at the doctor's office, playground or elsewhere. I don't tell him to, but he does. I'd like to think that he's just instinctively knowing who needs a friend, like his brother (who he worships without apology).

Having an Autistic child makes you grateful as hell for that diagnosis because you know how much worse it can be.  A kid cannot die from Autism. He'll grow up to be an adult with Autism. He'll struggle, sure... but with the right therapies, interventions, supports and educations, he can be "fine" - whatever that is. This is not to say that I'll ever get into a normal sleep pattern and quit worrying about my child. I don't think I'll ever stop worrying about Morgan until he has a career, relationship and kids. And even then...

The best thing about being an Autism parent? You get to define your own sense of normal- and feel great about it. I used to feel like crap because my child wasn't/isn't "normal." What the hell is that anyways? MY normal is a kid that might just lick someone else. MY normal is a soulful boy that memorizes whole episodes of Thomas the Train, The Nutcracker Suite, Adele, The Temptations, BB King, and Kenny Chesney. MY normal is a boy that has fears about everything but what would seem rational to me to fear (like heights- hello?). MY normal is now IEPs, The OASIS guide, Temple Grandin memoirs, prowling online at midnight scoping out new information, and dissecting for the billionth time the proposed changes of the ASD definition in the new DSM. Normal is worrying so much that my stomach feels weird if it's not in knots.

Also, another best part are the surprises when your beautiful, amazing, wonderfully introverted flamboyant child does something that he (or she) isn't "able" to do.

Monday, January 2, 2012

Blessed in the new year

I haven't blogged in a month due to the craziness of the holiday season, so I'm just going to give the synopsis.

Morgan did very well over the holidays, even though we traveled. It helped tremendously that we went to my mom's place, which he's always loved, and his grampa was there (he works out of state)! There was some misunderstandings (mild) over Morgan's tone of voice and if he was being rude or not and honestly, I stayed more on edge and stimmed my butt off more than Morgan did. This means I pretty much chain smoked. I know it's going to take a while for everyone around me to get used to the way they have to approach Morgan.. it's different from how we've been doing it, that's all.

My gramma must have found something on Oprah or in her magazines about AS because she came up to me and suggested that Morgan was "high functioning" and had really "opened up" to her for the first time (he came up to her, hugged her and said "I like you"). Haha, she bribed him gave him a present like she always does at the very start of the visit. So yeah, Gram, he's thawed- toward your wallet. He hung out around all Christmas day hoping to get another $10 bill off of her! Also, according to him, not all old people smell funny anymore. His brother disagrees.

Also, my kids got Lenovo tablets from their Granny (my mom is Babe, Thomas' is Granny). Now they can play educational games Angry Birds on trips! They can also say "poop" "potty" "butt" "pee" and other gross things to a Transformers Autobot in an app where it repeats it back to you, total echolalia, if you ask me.. but they enjoy it.

Morgan touched my heart the way he shopped for his brother's Christmas and birthday presents. Normally, Morgan is in and out of a store when shopping for me or his daddy. Now, for Bay? Or one of his peers? NO. He'll take over an hour if he has to- especially Bay. He wants it to be the perfect gift, Bay's favorite. I think this year he succeeded :)

I'm so very blessed to have these two boys that love each other so much. They've brought color and life into my world. Morgan has expanded my boundaries and my heart from the very beginning and Bay has turned all of our world's upside down :)