They say it hit us with 6 inches in about an hour.

Now it’s getting darkish green again as more storms approach. See you on the flip side.

I can’t believe my little boy is nine. That is all.

So I like advice column, I read them often and have a few sent to my inbox. Today’s Dear Margo features a question, theoretical in nature, about why there’s a been a sudden rise and awareness of issues like ADD, ADHD and autism. I’m not sure why autism gets lumped in with ADD, seeing as ADD is a learning disorder and autism is literally, a different kind of brain. But my sad comes from the comments, where loads of truly ignorant, close minded people blame TV, junk food, lack of exercise and lack of spanking for these problems.

Yes assholes, my child has a differently shaped brain because I don’t spank him enough!

Seriously what kind of douche do you have to be to blame the parent for the child’s neurological disorder? Because we chose to fight with these things every day for the rest of our lives. Because when our kids were born we went to the doctor and said “you know parenting isn’t challenging enough, let’s fuck up something in this kid’s brain to make it real fun.”

Because I want to have a child that gets weird looks, and I want to be the parent that gets nasty looks when my child has a meltdown in Walmart simply because something is too loud, but others look at me like I’m raising the worst brat ever. I want to fight him every time we go out because he is shaky and the trip isn’t ground into his routine.

We didn’t chose this life, for us or our children. The idea that genuine neurological disorders are somehow the parent or child’s fault–or choice–is an ignorant, hateful thing. How about instead of looking at us with judgment and blame look at us with admiration and support. Because it is very easy to abandon children these days. And those of us who are stepping up to support our children, to help them to the best of our ability, should be lauded and celebrated not be forced to fight against the crushing weight of this sort of ignorant opinion.

Anyway, here is the article, if you too want to comment, and here is my comment. I think I should have put “Fucking douches” at the end.

As a mother of an autistic child I am very upset to see these ignorant claims that junk food, “lack of spanking” and “lack of exercise” are the causes of autism! I will give you that ADD/ADHA/et all are likely over diagnosed, but autism is literally a matter of a different kind of brain. Studies have shown that the autistic brain is shaped different and works differently (and often times it is larger than the “normal” brain). Furthermore there is NO medicinal “correction” to autism, so the idea that parents and teachers of autistic children are just trying to drug bad behavior out of them is insulting.

Diatribes like the ones in these comments are why parents are terrified to seek help, terrified to admit that their child might have a problem. It is NOT a parent’s fault that their child is autistic and this sort of pushing blame onto the parents’ actions only ads layers to the guilt and pain we suffer when our child receives the diagnosis.

Trying to beat, exercise, manipulate or otherwise force a child with a genuine neurological problem into “being normal” is abuse, and as a society we should be ashamed of ourselves. That is where all these poor kids were fifty and sixty years ago, they were beaten or otherwise forced into “normal” behavior or locked away in asylums or abandoned to the streets.

Fifty years ago we did not value the mental health and well being of ourselves and the people around us. Those with problems considered common today were dismissed as defective, thus the huge problems with returning veterans.

I thank God that my son was born in a time where people do (or should) understand that being different doesn’t mean he is defective, or incapable of functioning in society. He doesn’t have to be locked away like some dirty secret. We work extremely hard every day, with very little respite from friends and family to try to help him learn the skills he will need to hold a job and lead a happy, healthy life. Exercise, diet and our punishment style has very little, if anything, to do with it and those of you out there passing your crushing, blind judgment on all the families like mine who are trying to make YOUR world a better, more tolerant place should be ashamed of yourselves.

A lot of the stress of caring for a special needs child involves looking toward the future. If I had a dollar for every time I’ve wondered if he’ll able to hold a job, and have friends, and manage a household (even if it’s only him in it) then I wouldn’t have to worry about because I could just pay people to do it for him.

But those are just my concerns, sometimes I step back and try to look at it from his point of view. I don’t think he’s going to be the kind of guy who will go to a job he dislikes everyday to make sure his bills are paid. It’s often all or nothing with autistic kids, and I have the feeling a career with be no different. So it’s not uncommon for me to look at the likes and skills he has now and wonder if he’d be able to make a career out of them.

Unlike me, he isn’t a writer. Large writing or reading projects overwhelm him. He loves being read to, and acting out stories, but hates writing and reading. Unlike Jason, he’s probably not going to be able to work in at a job that requires a lot of communication, often with drugged people.

One thing he’s very good at it mimicking. Especially static things, like logos. So we’re mused about him working with graphic design. Lately he’s been working with a very familiar childhood material, Legos. Now the things he is interested in he tends to take into different places than most kids. when I say he likes to build with Legos I don’t mean houses I mean:

He makes the THX logo and the New Line Cinema logo. He’s made cars from F Zero X (one of his favorite video games). He’s made little Mario worlds, goombas and more.

Today I was watching Rachel Ray (as much as I’d like to say it was because of Dr. G being on the show, no, I really watch Rachel Ray) and another guest was Nathan Sawaya. If you don’t know who he is, he’s an artist who makes sculptures from Legos (gallery here).

Seeing some of his work just blew my son’s mind. People can get paid to do what he’s doing right now. And also there are so many more things to build than Marios and PBS logos. Even more so, people can get paid to be strange and different. That last bit’s the thing that really engaged him. You don’t have to be a doctor or lawyer or computer guy. You can be completely outside the box, and if you are driven enough and clever enough you can succeed at it.

So remember that. Me, I’m going to try to be as bold and unique as my son, and try to help him see that there’s nothing wrong with being different.

I’ve been blogging in advance these past two weeks, so rather than overflowing the blog with posts here’s a catch up one.

Ann Aguirre Rocks

She’s been on my auto buy list for a while because she writes deliciously dark and sexy spec fic. She had a release yesterday (her first UF title) and she blogged about selling it and what it took.

Now what amazes me is, well, she’s an awesome writer. And further more she doesn’t talk much about what it took to get published, which on our end of things makes it look effortless. Like she just wrote the book, sent it to a few agents and got representation without much difficulty.

Except in the post above she lets a bit slip and mentions that it took a while to sell her first book, Grimspace. Long enough that she started to doubt her ability and had a hard time writing (because why bother when no one wanted the work she was producing. Wow that sounds familiar.) she even says that one agent told her Grimspace was unsellable.

WTF…seriously? How different was the querying version from the final version because Grimspace was very well received for a debut. Aguirre has a solid fan base that’s passionate and she puts out a solid story every time. So it amazes me to think of what said agent would consider good fiction if this story (which I loved) was not just “not my thing” but outright unsellable?

And I have to say that hearing that it wasn’t so simple for her really helps me know that the emotional up and down I’m going through trying to sell my debut book is pretty normal.

Jodi Lee gave me a blog award

It’s part meme, but it’s nice to know that someone out there is reading. I mean, I know what my hits are, so I know that there are lots of your out there reading. But so few people comment, so sometimes it feels like I’m standing in a room speaking to an audience that may or may not be on the other side of the wall. Ah, the joys of blogging.

Here’s what Jodi, so sweetly said about me. Seriously, I’m blushing now.

Michele was one of three writers I was nervous to become acquainted with from the CWW forum days (she, Louise and Kevin actually, lol). She had a spark, a determination in her goals and life that just frankly terrified me. She’s been amazing throughout a rocky friendship, willing to talk things out rather than drag them on. Her life is on her blog; the good, the bad and the crazy (half the siding on her house was ripped off during a storm, and the pictures of that damage, and the ice storm this past winter! Eeep… ).

So I have to nominate five people on my own and give you ten true things about me.

I nominate:

1. Stacia Kane for her (righteous) rants about RWA, Agentfail, Pap Smears and more. Girl’s awesome, go buy her books.

2. Ann Aguirre also for her blogs on RWA’s policy on Christian Romance and Erotic Romance and on miracle sperm.

3. John Scalzi who is simply full of awesome. (And doesn’t play these games, but you should be reading his blog anyway.)

4. JA Konrath, and ditto.

5. Brian Keene, who says very smart things about small press/horror publishing, but is received as well as Cassandra.

Now my ten truths.

1. I like memes. I’m sure you never would have guessed that. But I do.

2. I would like to model someday. Not because I want the career (or have the body, I don’t) or the attention, but because I love the make up, dress up, take lots of pictures. You know I’d love to shoot a model someday too.

3. I am motivated by things that intimidate me. I fear being in new situations and making a fool of myself in front of people, but I’m driven to force myself into these situations any way to conquer them.

4. I can be quite lazy.

5. In high school I spent a lot of time doing things to make people scared of me. It didn’t work.

6. Well except that one time in physics class when I couldn’t get a handboiler to boil. The teacher patted me and said “that’s okay, vampires have a right to an education too” and suddenly there was a five foot circle of empty space around me where my classmates had been. That’s, unfortunately, one of my best memories of high school.

7. Speaking of high school my Wold Civ teacher was a crazy PETA-vegan-activist (who once stopped class to run out and put herself between a man with a chain saw and what turned out to be a diseased tree in the courtyard), who thought she was the reincarnation of Alexander the Great’s gay lover. She was one of my favorite teachers.

8. The first real writing award I won was for writing a myth–entirely in Latin.

9. I failed to put out a high school creative magazine because I refused to sell ads in it. I ended my consideration of journalism/magazine editor when I realized 80% or better of their time is spent selling ad space or otherwise financing the publication. That crushed my dreams more than my first rejection.

10. I miss my guinea pigs. I had a whole herd once. 9 of them in a big open pen in my bedroom. One, Echo, used to jump out and come sleep with me at night. None of the others could jump out and she only jumped onto the bed, never out into the room.

11. Now I want a handboiler.

The Power of Apologies

Usually I try to avoid politics save for blatant humor (mostly because my political outlook, that no one is perfect, the system is too trained into the two party system and it’s rigged anyway, is not as flashy or entertaining as other positions, and generally just ends up with people telling me how wrong I am.) But this article sums up a large amount of how I feel.

If you don’t want to click through, I’m tired of no personal responsibility. I think that’s the core of the problem. This AIG/golden parachute BS wouldn’t happen nearly as often if people where of a mind set to accept their actions, and the consequences thereof, instead of just passing the blame around.

Usually those of us who have been wronged (referring to the politics/government situation not to anything personal at this point) just want an “I’m sorry”. It diffuses our anger more than anything.

There are some interesting stats and facts in the article.

Autism Awareness Month

Here’s a good article about the what life is like in the autism community. People often ask me why we’re not involved with the autism community here in Louisville. Well that’s because they are constantly looking for money or to raise money for research, but there’s no accounting for where it goes, often going to fund the organizations as they, in a circular manner, seek to raise more money.

There are no support groups that I’ve found, and at eight my son is getting to the point of being too old to be included in what few play groups and programs there are specifically for autistic children. Not to mention you can’t open your mouth without hearing yet another rant about the evil vaccine conspiracy or professions of the wonders of the really expensive GFSF diet.

The autism community sometimes wears on me more than my autistic son does, so why add that stress?

And finally:

Stop Calling Me!!

So I donate ONCE in better times to the Special Olympics and for the last two weeks I’ve gotten a call nearly every morning from someone wanting more money out of me. What, is there a list of “suckers”?

First, I hate hate hate that these places give you these boo-hoo stories and pressure you into giving. “Well it’s only $10″ I’ve heard enough times to choke a horse. Yeah, well you know what, I have had ten damn places call me and try that damn routine on me and I DO NOT have $100 to give.

What happened to “I’m broke” being the end of the call? What makes these people think that they can pressure you into giving money in the first place. That’s not charity, it’s borderline extortion.

With the new car and all our bills on the rise we have very little available for extras. I’m sorry charities, but my children are going to come first. Their happiness and rewarding them for working hard at school will always come before charities that pay people to call and pressure people into giving money so they can call more people.

When I say I’m broke, or I can’t afford to give, their response should be “thank you for your time” not a whiny “but…”

No but! You are cultivating a nasty little backlash against your charity with this policy. I know I for one, will never give to another charity that courts me this way.

You should be ashamed of yourselves, charities who employ this method. You are only a step away from collections people who threaten and belittle people.

Put simply, you have to. Like parenting, no one else can do it for you, and no one else can do it as well for your child as you.

Even if you have faith in your child’s teachers and the administration of the school you have to be involved, because you never know what it going on.

My son started school in August 2005. It was a huge transition, complicated by the fact that he wasn’t diagnosed yet, so the school had to legally treat him like every other kid, no ammenities. It was a struggle, in part because he had no clue how to do social school things (like ask to go to the bathroom. He would just drop his pants and walk toward the in room bathroom.) But he knew all his letters, shapes, colors and numbers and had started very basic reading and adding. He was ahead and behind at the same time. So he was equal parts frustrated and bored.

At the beginning of 2006 he was diagnosed and began getting badly needed support, like speech and outside of the class social lessons. He’s always done better one on one, so he began, in many ways, to catch up. More importantly, he began to see that school wasn’t us kicking him out of the house for eight hours a day. It was puzzling, challenging and fun.

Over the summer break something fantastic happened. He got bored. And being bored he started to want to go back to school, where there was always something to do. He was ready, we thought.

Except they put him in a class with a teacher who had no autism training, under a principal who thought he was a self punishing retard, a “school manager” who boasted that he didn’t have autism at all… and there were other problems. Things fell apart quickly. There were personel problems, communication problems, training problems…put simply everyone thought they knew better than me because they had training and I didn’t. A few thought they were going to “cure” my son and were bitterly disappointed to discover that they didn’t have a clue. The administration didn’t train or support the teacher, yet came down very hard on her for failing to control my son. The people who were supposed to be supporting him dismissed him as too much trouble, or a “retard” even to the point where we were once urged to give up on him, put in him a home “with other people like him” and get on with our lives.

His IEP (a lesson plan, which defines what ammenities a special needs child gets, which include things from a wheelchair to extra time for tests, to extra bathroom breaks or speech class) and BIP (Behavior Intervention Plan) were comepletely ignored.

I was not told until a month AFTER the problems began. Then the teacher began sending my son to the office, so they could experience hos behavior first hand. And the office, not giving a damn, sent him home. He came home early two to three times a week. And he learned that if he misbehaved (which degraded into violence) he would get sent home, he’s get to leave a situation that was incredibly stressful for him, people who he couldn’t communicate with, who yelled at him, and physically fought with him and overall made every day hell.

So guess what he did? Yeah, he hit, a lot. He kicked. He bit if those things failed. We had IEP meetings. We brainstormed. We tried new things. I was told they were trying new things, when in reality they just started putting him on the computer, or sending him to the class of people he liked to get him to shut up.

Then, one day they called an emergency IEP meeting. Those assholes got twelve–TWELVE–people to sit me down and go around the room one person at a time and tell me–only me–how horrible and uncontrollable my child was, and that they were sending him to another school. (and I also found out how badly they were treating him, and how they were ignoring the IEP because I wasn’t the autism expert. The autism expert, BTW, was too hung up on “don’t let him wear that lanyard (we used a lanyard with an id holder and a card in it to give him smilies for immediate rewards) because he can’t think that it’s okay for boys to wear necklaces” to offer anything actually useful.

Those days were real bad. They jerked me around on where he’d be going, among other things. One morning when I was getting him ready for school he broke down and begged me not to make him go. And I’d been sick to my stomach at the thought of looking at those people again, so it came as a relief. I don’t know who broke down worse, him or me, but it was bad. And part of it was my fault, because I had trusted them to do their jobs and I have believed them when they didn’t deserve it.

But you know what, moving schools was probably the best thing to happen to us.

In January 2006 he moved to a new school, one that is a third hearing impaired/deaf kids, so the whole school is familiar with handling special needs children. His teacher was way different. First he looked at my son as a challenge, someone who needed help, not someone taking up all his time who was useless and not capable anyway.

And over two years his new teacher might not have gotten him caught up to his grade level, but he did something far more important, he restored my son’s faith in teachers.

But this past fall be encountered problems again, that changed how we deal with those dealing with my son. After my trip to Context my son had two meltdowns, bad ones, in school. The administration once again brought up the idea of changing schools (thought this time is was much different). However, not only was the intention different, I was different. I was not opening myself up to another 12 person pile on, or anything that happened the first time around.

Seven Counties, a mental health advocacy and assistance group here in Louisville, offers case managers, that is a social worker whose job it is to come to your house every month and talk about what your family needs, how school and behavior, etc is going and more. I signed up after my son switched school and the first thing I did was call my case manager and tell him everything. He in turn did everything from talk with me, look up options, keepe me calm when I started panicking, remembering what happened last time. And he got us in touch with a behavoralist who went into the classroom and gave us a non-biased opinion of what my son needed, and was or wasn’t getting in the class.

The bad news was, again, his IEP and BIP. But this time the problem was that the methods the experts and professionals were telling us to use weren’t working with my son. But the teacher’s hands were tied because the system demanded certain things from him and those things were the behavioral equivilent of genre tropes. He has autism, use social stories (which never worked with my son). He has behavioral problems, give him a reward system (which was hard to impliment since his #1 reward isn’t candy or high fives or stickers, it’s a break from work.)

My son was also in a classroom mostly intended for mildly mentally retarded kids, that heavily depended on rote learning, repetition. Not to mention one teacher to ten kids, all of whom were prone to meltdowns, and the fact that my son was only a problem when you tried to get him to do work. Left to his own devices he was wonderfully behaved.

So again, he was suffering, not emotionally or mentally, but academically. And because I trusted the people dealing with him, I just let the situation go. (Still, I don’t think it was the teacher’s fault. His hands were tied and the system just wasn’t listening to him.)

We were presented options, and funnily enough, some things were kept from us. There were three people who where strongly pushing for him to move schools again. We were ready to fight it, tooth and nail, until someone finally told us that his school actually had the classification of class that they wanted to move him to, and not only was it next door to my son’s current (at that time) classroom, but he was already familiar with and working with the teacher.

The administration outright tried to push us into changing schools (where none of the people present would have to deal with my son) while his actual teachers sa quietly by, completely wrapped up in bullshit public school politics. They couldn’t help without threatening their jobs.

Which is why it’s our job to advocate for our children. Because other people literally cannot. You cannot depend on teachers, administrators ,etc to advocate for you because you do not know what they are told, or threatened with, when you aren’t looking.

I am pleased to say that I wrote up a list of demands, and my reasoning for them, and walked into that IEP meeting with my case manager, the behavioralist, and my husband all with me. We cut off every protest, every excuse, every “but” that they had. We gave them our demands and…They backed down. They stopped pushing. Like a submissive dog they completely changed how they were dealing with us.

I’m not kidding, they went from essentially telling us that we didnt know what was best for our child and were going to harm him by not moving him, to appologizing and making up excuses for their own behavior.

A month later I walked in to another meeting, with another list of demands. See, they (meanting those three “experts”, not the acutal teachers) resented the behaviorlist’s contibutions. In fact, they blocked him from visiting the class for a follow up, and tried to exclude him from the meetings. (I had to call him and invite him on my own to make sure he knew when the meeting was.) they refused to read his report. They repeatedly told me they didn’t need him, because they had their own autism expert (remember, another professional who is bound by the school system she worked for).

So I wrote down all the methods he had, in my own words, with language like “The teachers and staff will…” I demanded that some things that they were insisting on (like those social stories, which as it turned out they knew didn’t work and were pushing to “prove” my son couldn’t be where he was then) be abandoned and other things be instituted.

And they backed down on every single one and gave me exactly what I wanted. And now my son is doing fabulous. His first teacher at this school taught him to trust adults, and his current teacher has the training and respect to bring out the best in him. Next month instead of going to an IEP meeting I’ll be going to a plain old Parent-Teacher Conference. Nothing’s wrong, and I just want to keep it that way.

So to sum up, you have to advocate for your child because the administration often has only their work load in mind, and the teachers are limited to what they can do. The experts are also school employees, and are often looking for a one answer fits all solution, which is not how people work, and definitely not how autism works.

You have to go in, because a teacher asking for help gets none, but a parent going in and demanding it is the most fear creature in a school these days. So it’s our job not to be friends to the teachers, or understanding with the administration. We cannot just hand our children off to the shcool and hope for the best. It’s our jobs to make sure they get the best that they can. It’s our job to demand more from the school system, because left alone, we’ll never get it.

Tags: advocating for special needs, autism, school system

Yesterday I talked about crashing, today let me just briefly talk about the hardest thing we’ve encountered in raising our autistic son.

He doesn’t look different.

You can tell when someone is blind, or an amputee, has Down’s Syndrome or MS or is in a wheelchair. But my son does not look abnormal.

In a way, this helps. He doesn’t encounter immediate discrimination.

But in a way it works against him. Imagine, if you will, that your child becomes more excitable/stressed any time he or she is in public, the more people, the more stress/excitement. Now, they also have oversensitivity to sound. You decide to go out to dinner at a buffet, because the kids love it and no one can decide on one thing to eat. Except the restaurant is packed. It’s loud it’s noisy, there’s at probably a hundred people all at tables in the same room…And even though your child wants to be there, has been there before and was excited when you arrived he/she is starting to have a problem behaving because there are just too many people and too much noise and your child cannot turn all that stimulation off. (This is another trademark of autism. Essentially they can’t “tune things out” like neutrotypical people can. This leads to amazing powers of observation and recollection of detail, but problems in a lot of other situations.)

They want to behave, but they just can’t because their whole world feels out of control and it’s sending their body and brain into panic mode. You try to talk, to reassure, but it’s not helping.

And the people around you begin to stare. They begin to look at you with sneers on their face. Maybe someone even butts in and tells you, “Control your kid!”

Now to hell with what other people think, but would they be as quick to complain if your child had some obvious disability? And that reaction puts more stress and you and on your child, who usually doesn’t want to misbehave.

This same principal affects how everyone deals with my son. An administrator at his first school outright told the teacher that he wasn’t really autistic, she was just handling him wrong. The same teacher had no autism training and (in my experience) seemed to think that with enough pushing he could be normal. When he had problems with school work she pushed harder. When he couldn’t do it, she assumed he was just misbehaving.

Because he doesn’t look different people always assume he is just misbehaving or being vindictive/mean rather than realizing that he may be just confused and frustrated.

For a long time we struggled to teach him that he was not a bad child. That his problems with using his words and understanding what other people wanted of him weren’t his fault. And that he could overcome them. Self esteem has been a huge issue for us.

I’m very happy that he has been building a good foundation of self confidence this past year. It means so very much to me. And remembering how he looked at me when he didn’t understand something, and had spent the day being told, maybe not with words, but with others’ reactions to him, that he was just stupid or not capable, or he was just being mean…well, that has been the hardest part.

Tags: autism

Think about that word for a moment. Crasher.

Those on the spectrum often have sensory issues. Some are oversensitive. (Actually, my son is oversensitive to loud sounds. The sensory stimulation of a movie theater, for example everything is dark except the hyper focus of the movie, which is larger than life, and sound, loud sound, is all around, vibrating the seats and the skin, can actually shut him down, like when a baby falls asleep from too much stimulation. This is why he often moves around while we’re watching a movie, going from lap to lap, or floor to lap.) Some are undersensitive, which can lead to some annoying or even dangerous behavior.

My son is a crasher, which means he’s undersensitive when it comes deep tissue stimulation. It means exactly what it sounds like, he “crashes”. Bouncing is a very common behavior. Hugs or squeezes often help him calm down and focus (which he can do by himself with the use of stress balls, playdough or those waterfilled donuts and tubes you can find in toy aisles).

But there are days (like today, which is last Thursday to you) when none of this seems to be enough. Days like today he walks down the hall slamming into the walls. Or he repeatedly flops onto the bed as hard as possible.

Over the years he’s become very good at knowing how hard to “crash” against what. But that doesn’t make it less alarming to people who don’t know, or, to be honest, less annoying on the days when it gets real bad. In the past, people have suggested that he was actually self punishing, or wounding himself with this behavior.

It could be worse (let the them “anal exploration” sink in for a moment.) But it is one of the larger challenges we’ve had to face over the last eight years.

Tags: autism