So it occurred to me today that a lot of people know that special needs kids are just kids like the rest of us, um, the other kids, and have the same wants and needs and feelings. And I know that part of the issue of autism awareness is that there is no magic birthmark that appears on a child’s head that tells people they’re autistic. A lot of problems come from people not knowing how to handle some situations.

So here’s what happened to us today. We have been visiting the YMCA twice a week for open swim. The kids are doing very well, are becoming very comfortable with the water, and furthermore with the pool rules and locker room rules. In fact, both kids are really enjoying swim time not just as exercise and recreation, but as social time as well. If there aren’t other kids to play with they will play games with each other.We’ve been having lots of fun, and the kids have been making single serving friends, or at the very least been learning how to deal with other kids/people in this situation, which for ASD kids is a BIG deal.

Today super lifeguard (who was pacing the edge of the pool, getting onto everyone for everything, to the point of waving a laminated copy of the pool rules in people’s faces) was in residence. (There were issues with bigger kids splashing and practically jumping in on people too, but…) While I was hanging up my purse on the wall my kids went a head and got into the pool. They’re comfortable with it, the stairs are all of three feet away from where I leave my purse and it takes me all of ten seconds to hang up the purse and be right behind them. Super Lifeguard yelled at them, and me, telling me I have to be in the pool with them. Well duh. I’m in a bathing suit, with goggles and dive rings on my arm, right behind the kids. But apparently I have to be in the pool first.

Then a few minutes later my daughter wanted me to race her swimming. So we do laps short ways across the pool and when I turn for a lap back I see the lifeguard scolding my son and removing him from the pool. There’s never been a problem with his behavior in the pool, other than the occasional jog, so I’m wondering what the hell. The lifeguard tells me my son was stealing toys from another kid (a rubber ducky that my son had been playing with when I moved all of three feet away to do laps with my daughter). The thing is there were three duckies, so both kids could have had one without any of them “being taken away”. The lifeguard then said that my son was squirting the other child and the parent complained. (Almost immediately after this incident, by the way, the parent in question had a very friendly conversation with me. Nothing significant was said, but it was absolutely friendly, no sign of this parent being upset at all.) So my son was removed from the pool and put in “time out” and threatened with getting kicked out altogether because he squirted another kid…in a swimming pool. (With several thirteen year olds nearby having a “who can splash the biggest” contest” about five feet away.)

I tell the lifeguard that my son is autistic so he doesn’t understand all the social rules like other people. My mouth is open to explain to him that things need to be explained in a way he understands when the lifeguard tells me that if my son is autistic then he needs to be at my side the whole time period. And he goes on to say that the pool is very busy and if it’s too much for my son we can go into a swim lane (which are all of three feet wide) to swim away from the other kids.

Now let me tell you something, Autistic does NOT mean incompetent. There are issues like sensory issues, OCD and yes, mental retardation are co-morbid (that refers to disorders that commonly occur together, I like it, so I use it a lot) but every mental issue, from depression to OCD and PSTD and autism is a RANGE of issues. If a child is Autistic it doesn’t immediately mean they are are stupid, or incapable. It means they have communication problems.

My son is perfectly capable of functioning normal, with a bit of aid, and the #1 thing he needs is help with communicating. You cannot pull him out of a pool and start chiding him and be vague about it. “You can’t do that” means nothing, but “You can’t squirt people” does mean something. Specific statements are easier to understand.

We almost went to complain right there, but the lifeguard backed off and as it turned out my son had been trying to play with the other little boy. They were playing with the ducks together and yes, my son squirted the other boy. Initiating social play is a huge deal to ASD kids, and in a way they make themselves very vulnerable when doing so. This is the time when they are most likely to be rejected by other kids for being weird or different. ASD kids do communicate, and therefore interact, differently, so yeah, it can come off as weird if you don’t see that they are simply trying to reach out to you. (My son for example, will sometimes go up to people and monologue a story. He’s trying to get attention and interact, and he doesn’t really know how to converse, so he monologues.)

So here’s what was done:

Boy plays with other boy by squirting him with a rubber ducky in a pool. Lifeguard jumps in, scolds older boy in vague language about the boy being wrong and misbehaving, makes him get out of the pool and sit in time out, then spends five minutes arguing with his mom about the boy’s behavior, ending with telling both that the child should stay right at his mother’s side.

What should have been done:

Lifeguard sees older boy squirting younger boy in a swimming pool with a rubber ducky. If the younger boy or parents were upset or complained the lifeguard should have gone to the child and said “He doesn’t want to play like that.”

That’s it. Or “Please don’t squirt the other kids.”

So how do you tell if you’re dealing with a special needs kid? Does it matter? Is it really that hard to be specific when correcting a child? Furthermore, if the child’s parent is right there, isn’t easier to just tell them if there’s a problem and let them parent their own child?

But instead pulling my son out of the pool and lecturing him about how wrong he was without him understanding exactly what it is that he did wrong (he thought he was being scolded for trying to play with the other child) led to twenty minutes of my son crying to me that he himself was a jerk and a horrible person and he had to leave the pool because the other kids didn’t like him. And the lifeguard’s instant assumption that autistic=incapable led to me leaving a rather angry message with the aquatics director.

I don’t like to be a bitch, but my son has every right to be in that pool, to play without me hovering over him at arms length. My daughter deserves to get to lap race with me, even if her brother doesn’t want to. I should not have to fight for these things for them, especially since no one was in any danger (my son is chest arms and head over the water in the shallow end and the other child was being held my his mother with a floaty strapped to his back).  If he had talked to me everything would have been fine and there would have been no issue at all. Not even a reason to point out to the whole pool that my son is not like the rest of them.

So if you find yourself in a situation like this there are the things to do:

1. Leave it to the parent to parent.

2. Make sure you are communicating clearly and efficiently. All kids people deserve it, special needs or not, and clear communication diffuses all kinds of situations and resolves all kinds of issues, usually harmlessly. All it takes is a little effort.

3. Don’t assume that a disability makes someone incompetent, stupid or incapable. It’s insulting, belittling and infuriating. If you don;t know what to do when someone says “My son is autistic” there is nothing wrong with asking “Then how do I help” or “then what do you suggest”.

Bonus points: No one responds well if you start a conversation by telling them they’re bad and threatening them.

Have a little consideration, and keep in mind that not everyone is like you. That’s all it takes.

This is a kid fueled post, so be warned I’ll be ranting. Today in her column Dear Margo addresses a huge, close to my heart issue:

My husband and I have a 9-year-old son with severe autism. I cope well enough most of the time, but I would really appreciate your advice about how to handle shopping.

My son may look like a typically developing 9-year-old, but if a loud noise startles him, or if he likes something and wants it, or maybe even for no apparent reason, he will make loud noises or say a few words repetitively, getting louder and louder. He can even have a full-blown meltdown (which is like a temper tantrum on steroids). When that happens, I try to finish my shopping as quickly as humanly possible, grabbing only the bare essentials (milk, bread, etc.) and leaving, apologizing and explaining if asked.

The past several times I have gone shopping, I have been yelled at by complete strangers and one woman tried to lecture my son on proper behavior. I’m at my wits’ end on how to respond. Usually, I end up in tears. If I had another way of managing the grocery shopping solo, I would do it. I already do almost all of my other shopping online or on those rare occasions when I can get a sitter. I would really appreciate any advice you could offer on how to handle this shopping nightmare. — Flustered in Florida

And the thing is, this letter just barely glances off it. My son looks “normal”. He doesn’t look disabled, and even when he is repeating or ticking it’s pretty easy to dismiss it as him playing or just talking to himself (both are self soothing techniques, they are meant to help him remain in a situation that is making him uncomfortable.) The problems we have is with transitions and when we don’t follow through how he expects us to. Like when a line out the door makes us change our mind about going to one restaurant, or if we want to go someplace he isn’t familiar with (or isn’t in the mood for). When we go to the chinese buffet, for example, he knows they have pizza, and chicken nuggets, and chocolate ice cream and every color of Jello (and a neato fountain in the front with koi!) but he knows there is very little he’ll eat there and we always get resistance, sometimes meltdowns, when we go. And we can’t give in, because he does know there is food from him to eat there, meltdowns are just his way to deal with this. It’s not throwing a fit over not getting his way, because he is told no all the time and deals with it. The meltdown is his reaction to stress that overwhelms him. Period. He hates them as much as we do (and often apologizes constantly after having one).

We could avoid situations that stress him out, However 1) We shouldn’t have to, because we have as much of a right to be shopping or dining where we want as anyone else, especially considering that all he ever needs is a few minutes to “reset” himself (and those minutes can be taken in a bathroom, or outside in the parking lot.) and 2) It is essential for HIM to learn how to deal with his own limitations. It is essential for HIM to learn that life isn’t always exactly how you want it. Things happen that you don”t like all the time and you have to learn a way to handle it. As a parent it is my job to actually raise my child to be a strong, capable, and to have problem solving & coping skills. This is one of the hardest things to do and the temptation is to try to force the world into shaping to the child’s needs rather than teaching them to co-exist.

There are somethings you can demand (education, laws against discrimination, gainful employment) and there are somethings that will never be inside anyone’s control (assholes, accidents, bad luck). We fight for the things we have to, but we also have to teach coping and problem solving skills, and maintain a family unit, not stop each individuals existence for the sake for the disabled child. (You risk isolating and scarring any “typical” children you also have, as well as burning yourself out as a parent.)

With few exceptions special needs children can learn to adjust to situations like shopping. They can learn to cope, like my son has by quietly repeating under his breath, playing and joking around, and most importantly by learning the positive side to being in these situations. There should be rewards for good behavior, for self coping instead of melting down and society needs to understand the importance of these kids being part of society, rather than seeking to shove them out and chastise parents for trying to integrate them (or fro having them in the first place).

I’ve been lucky that no one has ever opened their mouth to me about my children’s behavior in public. No, really, those people are lucky they’ve never tried to correct me on my parenting. But I have gotten dirty looks. And I have felt the miserable, center-stage feeling the letter writer refers to.

Never, ever assume that the child is just a brat, or the parent is just a failure. You have no way of knowing the truth based on a brief interaction at a store.

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.