Who Is Responsible For Our Children’s Education?

Over the years I’ve asked many parents and educators, “Who is responsible for our children’s education?”  We’ve had some lively discussions, let me tell you.  I’ll admit right up front that many people on both sides of the IEP table disagree with my opinion.  Nonetheless, I still firmly believe that my position provides the most benefit for our children and families.

A lot of people start out this discussion with moral declarations.  “The teachers should be responsible because they get paid to do it.  They’ve had the training and I haven’t.  It’s their job and I shouldn’t have to do it for them.”  My response to that is “shoulds” don’t count in the real world.  “What is” counts.

If you think your child’s teacher is doing a bad job there are a lot of constructive actions you could attempt to change the situation your child is in.  You could educate yourself on your child’s disabilities and share ideas with his teacher on things she could do differently.  You could help find your teacher more resources.  You could complain to the teacher’s boss, going up the food chain as far as you need to in order to get the results you want.  You could help pass state and federal legislation that changes the requirements placed on educators and school systems.  You could get an advocate or lawyer.  You could get your child moved to a different classroom.  You could move your child to a different school.  You could move your family to a different state or country where you think they would do a better job teaching your child.  You could get a tutor.  You could homeschool.  You could go back to school and learn how to be a teacher yourself.  Obviously, not all these actions are available or practical for every parent, but my point is that they are constructive actions that parents can and do take that can have a significant positive impact on their child’s education.

What actions are not productive and helpful for our children?  Yelling at the teacher.  Calling her incompetent, uncaring, or lazy.  Complaining to your family members and neighbors.  Complaining on message boards.  (Using message boards to get support or information is one thing.  Just complaining is different.)  Telling everyone how things should be but not taking any action ourselves to help make things change.  These activities may be rewarding and your opinions may be absolutely true, but they don’t do anything to actually help our kids.

To illustrate my point, here’s a game I play with the teens, young adults and parents in our Open Doors Now programs.  It’s called “True vs. Helpful”.  Imagine you’re driving on a little-traveled mountain road in the middle of a snowstorm.  (This is actually how I got to school in the wintertime when I was 16 years old.  We lived in a small town and if high schoolers missed the bus, they drove for an hour to get to school.  If it was snowing the trip could take up to four hours.  This is still how hundreds of thousands of teenagers get to school in remote areas in the US.)  You’re driving along and for whatever reason your car slides off the edge of the road and travels 100 yards or more down a steep mountainside and into a bunch of brush, bouncing off a few trees along the way.  (This does happen where I grew up, with unfortunate frequency.)  Your car is not visible from the road.  You’re still conscious but you are injured.  You can move but it’s going to hurt.  It’s still snowing and long before anyone else drives along the road above you, the snow is going to cover your tire tracks and no one will be able to see that your car went off the road.  There is a real possibility that no one will find you or your car until springtime and maybe not even then.

Then I make some statements and ask the kids and their parents if the statements are true and/or helpful.

“Someone ought to come rescue me.”  True?  Yes.  Useful?  No.

“It’s the highway patrol’s fault for not closing the road before I got on it.”  True?  Maybe.  Useful?  No.  (You get the idea.)

“Someone needs to build more cell phone towers around here so my phone will work.”

“My parents should have put better tires on the car.”

“I should have put snow chains on the tires.”

“I shouldn’t have tried to drive home.”

“The weatherman should have told me it was going to snow.”

“It’s the search and rescue team’s job to come find me.”

“No one ever trained me what to do in this situation.”

“The search and rescue team has been trained to deal with this situation.”

“I don’t like being here.”

“I don’t know what to do.”

“I’m scared.”

“This is too hard.”

Are all those statements true?  They very well could be.  But are any of them going to get you home safe?  No.  What statements might?

“If I want to live, I better find a way to get back up to the road.”

“Since it’s winter and snowing, I keep a blanket and food in the car.”

“I can try to stop my bleeding.”

“If I find something brightly colored in the car that I can put on the roof, it might make the car visible from the road.”

“I need to stay calm.”

“I need to remember what my parents told me about surviving in the snow.”

“This happened to my neighbor two years ago.  She survived.  So can I.”

Are these statements true?  Maybe.  Are they useful?  Yes.  Concentrating on doing the things within my power that might help my situation is much more productive than talking about what should happen or who is to blame.

So here’s the question.  If we’re stuck at the bottom of a mountain in the middle of a snowstorm who is responsible for getting us to safety?  The answer is – it doesn’t matter.  If we want to live, we better find a way to make it happen.  We need to use all the tools and knowledge at our disposal, make it easier for other people to help us, tuck our emotions away until we can afford to let them out, and not give up.  If we don’t, we become a statistic.

Now, in that light, let’s tackle the question of who is responsible for our children’s education.  My answer is that we all are.  The teachers need to do everything they can, we parents need to do everything we can, and our children need to do everything they are capable of, too.

Remember that our kids are not potatoes rooted in the dirt, waiting to be watered and fed.  They have capabilities and need to be held responsible for doing the best they can.  Teachers and parents absolutely have to present the best education to our children we can, and have realistic expectations, but the kids have to decide to attempt to learn.  We can teach a kid to read, we can give him books, we can tell him to read the books, we can offer him all the help he needs, we can provide a good environment, we can present him with rewards or punishments that he will earn depending on his actions, we can encourage him, but he has to decide himself to pick up the book and open it.  Our children definitely have a responsibility in their education, and the older and more competent they get, the larger that responsibility is, until eventually, it’s completely on their shoulders.  Moms, if you think your child’s college or job is going to let you follow him there and set out his pencils for him, you’re sadly mistaken.  Our job as parents is to teach them how to take over their lives to the best of their ability.

All of the above reasoning is typically not what people disagree with me about on the subject of responsibility.  It’s the following.  I believe that my child’s education is my responsibility and schools are one of the tools I use to provide it.  It’s not my responsibility because I’m the parent, not because I don’t believe in modern public or private schools (I do), and not because I think my child is incapable of taking on the job himself as he matures (I don’t.)  It’s mine because if he doesn’t learn the social, life and vocational skills he needs along with the necessary academics, it’s my couch he’s going to be living on for the rest of his life, if he doesn’t end up in jail or institutionalized.  I need to do everything I can to provide the best schooling possible, to develop his skills myself, and to motivate him to become as capable as possible.

How successful will I be?  I don’t know.  I’m making this all up as I go along.  I have no training, background or roadmap to help me.  But I do know that I’m darn well not going to sit at the bottom of a mountainside, complaining until I freeze to death – not if my child’s future is at stake.

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Dear Autism Mom

I wrote this blog post partly to address the comment below that a mother posted in response to my article “Do You Have The Courage?”  But it also talks about issues other parents have raised to me over the years.  So, to the original “Autism Mom” who posted the comment, I am in no way implying that you have or expressed some of the opinions and attitudes I discuss.  While I tried to address the points you made in your comment, I have included a lot more here, too.

Comment to “Do You Have The Courage?”:

I bet there was a lot more to the spitting story than you share. It’s amazing how you find fault with the parents every time, and fault with the school personnel never. Hmmm, I have read many stories of kids being abused at school, but you seem to think that school personnel is perfect. How are we supposed to manage behaviors when we aren’t even there? When we never see those behaviors! I know, we assume someone is doing something the bring out that behavior in the child. Really, a kid who has never spit suddenly is spitting at the teacher? Yep, makes a normal person question what is going on that makes the child spit? I can’t tell you how many times I was asked “What do you do when your child hits herself in the head with a fist at home? When I had never seen those behaviors at home because I didn’t abuse her into doing self injurious behaviors at home! And then there is my son, who does have anger issues, due to having a traumatic brain injury, but it’s interesting how those anger issues have only been an issue with teachers who were abusive to him. The last two have been kind and caring and don’t bring out the anger issues. It’s interesting that you always find fault with the parents. It makes me wonder why you are so sure the parents are at fault, are you at fault?

Dear Autism Mom –

You bring up some good points.  There probably was more to the spitting story, but all I saw was what the mom posted on the message board — the same things the other parents saw.  My point was that they automatically assumed that it was the teacher’s fault.  No one asked any other details about the story or suggested other alternatives.

You said that your children were abused.  I believe you and I’m sorry.  It’s a horrible thing that shouldn’t happen to anyone.  However, just because you’ve witnessed it with your children doesn’t mean that every child who has a bad day at school is being abused.  Typical kids have bad days and kids with disabilities have bad days, too.  It’s not reasonable to expect that because a child behaved badly at school that it was automatically the teacher’s fault.  Just as we can’t assume that it’s never the teacher’s fault, we also can’t assume that it’s always the teacher’s fault.

Am I harder on parents than I am on teachers?  In this blog I probably am.  (My book is split 50/50 between parents and teachers.  I yell at everyone there.)  That’s because I am a parent and I spend more time working with parents, so I’ve seen more instances where parents weren’t dealing with a situation productively than times when teachers weren’t.  Are all teachers perfect?  Absolutely not.  Does abuse happen?  Absolutely.  Are there more parents who abuse their children than teachers who do?  Yes.  Reading the newspaper proves that.  While we of course have to be vigilant about protecting our children from other people, that in no way says that we’re perfect.

I watched a mother come into an elementary school once after the school had called her eight times to tell her to either send money for her child’s lunch, send him to school with a lunch, or sign her child up for free lunches.  (The school was in an affluent neighborhood.)  The mother replied, “I don’t have time to make his lunch.  If he doesn’t remember to do it, let him go hungry.”  The child was in second grade.  Once I heard another mother complaining bitterly that the school was “doing nothing to teach her child to read.”  I asked the mom if she did the required 20 minutes a night of reading homework with her child.  Her response, “No.  I don’t have time.”  Another mom complained to me once that the school wouldn’t give her child a peer buddy.  Her son was 17 years old, 6’2” and violent.  But she thought it would be great to use another child as a training tool for her son.  I talked to one mom who had a teen-aged son who’d been diagnosed with Asperger’s for five years and was having a really hard time.  The mom was getting a graduate degree, so she was well-educated and able to process complex information.  But she had never researched anything about Asperger’s – not one book, conference, therapist appointment, nothing.  She said it was too upsetting and she didn’t want to think about it.  She was doing nothing to help her child get the help he needed.  One mom wanted her young adult son to volunteer at our program and to work with our primary grade students.  Fortunately I had already heard that he was awaiting trial in another state on sexual abuse of a minor charges.  The mother was aware of the situation but thought working with our kids would be good for him.

I’d very much like to have those people who think that because we are parents that we must be always right, come sit in on the conversations I have with parents.  I’ve talked to hundreds and hundreds of parents.  98% of them are wonderful and doing absolutely the best they can.  But the other 2% aren’t.  That’s just human nature.  No group of people is perfect.

As you point out, it’s very common for parents and teachers to see different behaviors from the same child.  When kids are at school, a lot more is demanded of them than when they are at home.  Typically at school they have to do a lot more that they don’t want to do and they are in an environment that doesn’t completely accommodate them. They have to live with other people’s schedules in a classroom that has to accommodate the needs of 10 to 30 other students.  Sometime the child has more behavior difficulties at home, typically because they’ve held it together all day at school and they meltdown as soon as they get to someplace where they can relax.  Sometimes the child can’t hold it together at school and the behaviors happen there.  My child was like that – his behaviors were much worse at school than at home.  Not because he was being abused, but because being around so many people all day when he didn’t understand their social behavior was incredibly stressful for him.  At home it was quiet and he had far less work to do.

Also, since my target audience is parents and teachers of kids with mild autism, it’s very reasonable to expect that the kids will learn alternative ways to deal with a problem than spitting on people.  These kids aren’t dumb and aren’t incapable and it’s incredibly insulting to assume that they can’t learn to control their behavior.  And they better learn alternative methods of expressing themselves by the time they’re adults otherwise they won’t be able to hold a job, go to college, have a romantic relationship or otherwise reach their potential.  Most of these kids don’t get services from regional centers or qualify for other state assistance.  They are going to be in the competitive workforce.  No one is going to make accommodations for them if they don’t have basic social etiquette.  Read the ADA.  Half of NASA has mild autism but they don’t get to spit on their co-workers.

By assuming that the whole world is going to change to accommodate our children, we’re not only selling our kids short, we’re putting them into a dangerous situation as adults.  I had one mother complain to me that her 15 year old son got in trouble for arguing with the discipline office at school after he was caught doing something against school policy.  (He knew it was against school policy.)  The mom said that the school should realize that he had Asperger’s, (they knew and were already giving him accommodations), and that people with Asperger’s argue a lot so he shouldn’t have consequences for arguing.  The kid was 6’ tall and going to be walking around the community by himself within a year or two.  If he didn’t learn how to act around authority figures and that there are consequences if you don’t act appropriately, he could get into an awful lot of trouble with the police.  Our kids don’t have a big “A” tattooed on their forehead.  They look like everyone else and their disabilities often aren’t apparent to police.  Instead they look like they’re belligerent or on drugs.  It won’t prove to be much comfort if the police apologize after bonking our kid on the head because when the officer told him to sit down and be quiet, he got in the officer’s face and the officer felt threatened.  That happens all the time, too. We have a women in our town whose main focus is advocating for kids with disabilities who have had trouble with the legal system, often due to their disabilities.

Let me say right now that my blog is not going to appeal to all readers.  I am totally fine with that.  If people are looking for someplace that’s going to tell them how terrible the world is to them; what precious angels their children are and that they never, ever do any wrong; that everything bad that happens is someone else’s fault; that our kids don’t have to change and that society is wrong if it doesn’t learn to accommodate their every difficulty; or that society will always take care of their child – my blog is not the right place to find it.  There are a lot of other blogs on line that you would get a lot more out of than you would mine.

If you’re looking for a blog that talks realistically about the challenges we and our kids face; points out pitfalls to our parenting styles and ways we can improve; lets you know that you’re not alone; offers strategies other than “go sue everyone because they could fix your kid if they really tried but they just don’t want to”; and shares the experience of someone who has watched over a hundred of our kids grow up to be functional adults and has sat in more courtrooms, hospitals, education policy meetings and IEPs than she ever wanted to, then this blog may be a good fit.  Or it may not.  Anyone who has read this blog for a while knows that I’m not all sugar and rainbows.  I firmly believe in our kids’ potential and capabilities, and so I have high expectations for them and for us parents.  And while I am not always right, I am always opinionated.

Educators who want to learn how to work with our kids have a lot of resources available to them.  We parents don’t.  We have to find our information on our own.  If this blog helps you help your family, then by all means, read it and pass it on to a friend.  If it doesn’t, find one that does.  There are a lot of fantastic blogs out there that take a very different approach than mine.  Find them.

As to whether or not I’m ever at fault, the answer is a resounding yes.  Often.  There isn’t a struggle I’ve talked about on my blog that I haven’t personally been through.  There are times I should have been more aware of what was going on at my child’s school and insisted on a different placement, different teacher, or more help for him.  There are times I should have been harder on him or cut him more slack.  I’ve put him in situations he wasn’t ready for and I’ve held him back when I should have pushed him forward.  Sometimes I’ve ignored the needs of one of my children too much in order to focus on another who was in crisis.  I should have stuck out the social rejection I felt he experienced (that in retrospect I know he didn’t) in church and scouting and kept him in both programs.  I should have accepted him for who he was and enjoyed his exuberant (if slightly odd) personality much sooner instead of always trying to “fix” him.  I shouldn’t have let him climb the playground equipment that I was sure he would jump off of even though all the other kids didn’t and all the other mommies said I was being too nervous.  (He did jump, but he survived unscathed.)  I should have started him on medication sooner.  There are a lot of times I should have asked him why he did something before I assumed I knew why and disciplined him in an non-useful way.  I should have read more books and gone to more conferences and listened a lot more to some of the excellent advice I was given.  I should have let him go camping with my sister, who while not knowing much about kids with Asperger’s, is an RN and could provide almost any first aid he might have ended up needing.  I can think of a lot more, but I’m sure you all get the point.  If I felt I was perfect I would not feel the need to write this blog.

And to the mom who told me that my child obviously never had significant difficulties so I simply cannot understand what other parents are going through and that therefore my opinions are in no way valid, let me point out that my kid used to spit on people at school, too.  He didn’t spit on the teacher though; he spit on other kids.  He kicked the teacher.  He threw tantrums eight times a day, routinely escaped the classroom and had to be tracked down, threw pencils at people, hit a kid, spent eight months screaming in the classroom while we tried every therapy and made every environmental and medication change we could think of.  He threw yogurt at a girl who was trying to help him.  He licked a boy scout (on the shoulder.  I still have no idea why he did that one.)  We’ve had police helicopters out looking for him, we’ve had fire trucks come to school because of him, and we’ve spent time in the ER getting stitches.  Yeah – I think I might have a little understanding of what life’s like when someone in your house has Asperger’s.

I will never tell anyone that helping our children learn how to modify their behavior is easy.  It’s not.  It doesn’t happen quickly either.  (It took us six months to teach my son not to spit on people, and I spent a lot of that time in tears because I was afraid we would never succeed.)  Nor will we be able to teach every child to control every behavior.  But that is no excuse for us all (parents and teachers alike) to not try everything we can to help our kids have every chance they can for a good life as an adult.  “Because it’s hard” is not good enough.

– Cassie

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Do You Have The Courage?

Imagine, for one horrific moment, that your child was inside a burning building.  Or that you were out hiking and an enraged grizzly bear started running toward your child.  Or that your child stepped out into the street in front of a truck.  What would be your first instinct?  Your first impulse – not guided by rational thought and not necessarily the best plan of action – what would it be?  To save your child?  To run into that burning building, to throw yourself between your child and the bear, or to dart out into the street to push your child out of the truck’s path?  Of course it would.  As parents, most of us would do anything we had to, face any danger, in order to keep our children safe.  The drive to protect our children is at the core of who we are as parents.

In the worlds of autism and other special needs, we talk a lot about protecting our children.  The subject is all over the internet.  We hear it from our friends, our family, and random strangers.  We have to fight for our children.  We have to be warrior moms and dads, and fight to get our children the help they need from doctors, schools, and insurance companies.  We have to have the courage to stand up for our children, even if it’s hard and unpleasant.  Our children are depending on us.

But what happens if the threat to our child doesn’t come from his environment, but instead comes from his own behaviors?  What do we do when our child’s own actions and attitudes threaten not only his immediate well-being, but his future as well?  Our first impulse is still to jump into the fray and protect him, but sorting out how to do that becomes much more difficult.

Once when I was browsing an online autism message board, I read a post written by the mother of a boy who had mild autism and was in the second grade.  She had just received a phone call from the boy’s school saying that he had spit on his teacher.  The mother was upset and didn’t know what to do, so she had turned to her online friends to give her advice.  The responses she got from the other mothers were almost universally in agreement.  They said it was imperative that the mother find out what the teacher had done to make the child spit on her.  Then the mother had to make the teacher change her behavior or change the child’s environment so he would no longer feel a need to spit on people.  The teacher might resist her demands but the mother had to insist, after all, spitting is a nasty habit and if the child continued to spit on people he would suffer social consequences.  If the parent wanted her child’s classmates to accept him, she had to get the teacher to quit making him spit, and the sooner, the better.

That’s a true story.  We, as parents, are so focused on protecting our children from the very real external threats in our world (bullies, users and abusers, chemicals in their environment, unhealthy diets, video games, an uncaring society, stranger danger, drugs and alcohol, etc.), that sometimes we don’t think about the dangers we ourselves are exposing them to every day of their lives.

Let’s say that child’s mother took the advice of those parents on the message board.  She marched down to the school (taking her child with her because after all, he needs to learn to stand up for himself) and she gave that teacher a piece of her mind.  She told that teacher in no uncertain terms that children with autism are very sensitive to outside stimulus, and that the teacher had better figure out what she was doing to make the poor child spit on her, and if she didn’t (due to her ignorance, prejudice, or just plain meanness), the mother was going to call the principal and the school board and a lawyer to make sure the teacher created an environment that didn’t torture the child and make him behave badly.

What would have happened had the mother followed the advice of the other mothers in her support group?  Would she have succeeded in stopping her child from spitting on people?  She might have.  Maybe the teacher would have managed to come up with a way to convince the child not to spit.  Or maybe the teacher would have decided that since mom wasn’t helpful in correcting the child’s behavior that she’d just quit telling mom when the kid spit.  Or maybe the spitting would have continued.   I have no way of knowing what would have been the primary outcome of the parent’s visit to the teacher.  But I do know what the secondary results would have been.

The child would have learned that he could not control his own actions and that it wasn’t reasonable to expect that he could learn how.  After all, his mother had said he was prompted by his environment, that he was a good boy who wouldn’t spit except he was put into an environment that made him do it.  So obviously, he didn’t need to learn self-control and in fact, he couldn’t.

He would also learn that he was not responsible for his actions.  His mother said that clearly that the responsibility lay with other people.  So whether he could learn to control his actions or not, it didn’t matter, because it wasn’t his fault and wasn’t his responsibility.  Other people were bad if they didn’t prevent him from spitting.

Finally, he’d learn that no matter what situation he found himself in, Mommy could come solve it.  Whatever he did, there would be no real consequences, because Mommy could always yell at people until the consequences went away.  It would have come as a rude shock to him when he grew up and discovered that Mommy couldn’t yell his boss into not firing him or yell the courts into keeping him out of jail.

Obviously, mom making one trip down to the school probably wouldn’t have a huge effect on her child’s personality and attitudes.  But imagine if this was the way mom handled every situation where the child made a mistake or failed.  How would that effect him?  He would grow up to be someone who believed that when it came to his own shortcomings, he was incapable of addressing them, that he was not at fault nor responsible for them, and that he would never have to suffer consequences because of them.  That is huge disability for our children to acquire and it is a very real danger to their future happiness.

The story about the spitting kid is true.  It actually happened and that’s really the advice the mother received.  It’s a pretty glaring example, but more subtle challenges appear in all of our lives, more often than we’d like – each time the phone rings and it’s from the school, or another parent calls to tell you something she thinks you should know, or you see your child do something that you know isn’t right or healthy.  All too often, we have to evaluate a situation and figure out what we should do to help and protect our child.  Do we make him feel better and make the problem go away?  Do we make him cry as we teach him the skills he will need to survive as an adult?  Will our choice crush his spirit and make him feel inadequate, or will it strengthen his self-esteem?  Will my child hate me?  Our instincts tell us to make our child happy and keep him safe, but is that always the best way of protecting him?

Not only are these choices not easy, it takes a lot of courage to even acknowledge they exist, let alone to actually make these decisions.  If I decide that the situation my child is facing is someone else’s fault, then I don’t have to admit that my child’s behavior is a problem.  I can squash any doubts I have about how good a parent I am, and I can pretend that my child’s bad behavior doesn’t exist, so I don’t need to worry about what that means for his future.  Admitting that my child has a problem is scary.  Pretending he doesn’t feels much safer.

Grizzly bears are easy.  Defending our child from a bear may kill us, but our instincts tell us exactly what we need to do.  Most of our day-to-day decisions are not that clear cut, but they are just as important to our child’s well-being.

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Will Killing The Words Retarded and Autistic Help?

I just read a great post on the blog Postcards from the edge of the Spectrum titled
Taking Back The R-Word. In it the author says that by using the term “r-word” when we’re asking folks not to use the word “retarded”, we’re lessening the power of our protests. We should feel free to say, “Please don’t use the word retarded. It’s thoughtless.” (Forgive my paraphrasing here. To get the author’s full message, please read the post.)

I agree with the author. I also think that using the term “r-word” makes us sound like a bunch of prissy second-grade girls. It’s as if we’re afraid of the word retarded or that if we say it, I don’t know, our heads will explode or our mothers will come wash our mouths out with soap. It’s just a word. Furthermore, I think our crusade against the word retarded is a waste of time that while it might make us feel better about ourselves, will ultimately do little to help people with disabilities.

Now before you start on the argument that words have power (which is true) or start writing me hate mail about what a callous, unfeeling, horrible person I am (which is almost completely untrue), hear me out.

Instead of telling people to “quit using the r-word”, or to “stop using the word retarded”, how about we tell them “quit making fun of disabled people”? I mean, that is our point, right? We want them to stop thinking that disabled people are “less than.” We want them to treat people with disabilities with respect instead of using them as the butt of a joke or an insult. It’s people’s attitudes that we want to change. Changing their vocabulary without changing their attitude is pointless. What ground have we gained if instead of someone insulting their friend by saying “What are you, retarded?” they say “What are you, disabled?” What do we do then? Tell everyone to stop using the word “disabled” and we’ll tell them the next right word to use – until the jerks claim that word for their own, too? That is how it works, historically – check out the progression of politically correct terms for minority groups over time. Today’s politically correct terms will be considered insulting in a decade or two. Changing society’s vocabulary does nothing unless we change people’s attitudes as well.

This isn’t just a rhetorical argument for me. In my immediate family (myself, my hubby and my kids), we are all disabled. Literally. I have the parking placards to prove it. So, this is an argument that affects our lives. When I look at what I want for my children (let alone for myself and my sweetie), I find that I don’t really care what words people use to describe my kids. I care how they treat them. If they’re being nice, I appreciate it. If they’re rude, disrespectful or insulting, I don’t. Period. End of discussion.

This argument about vocabulary extends to the world of autism as well. There’s a huge debate over calling someone “autistic” or “a person with autism.” People are arguing about how the words used affect the identity of people with autism. It’s more than a debate – in some quarters it’s an absolute war. Parents and autistics are in a knock-down drag out. (Teachers are kind of caught in the middle – doing their jobs and waiting until the dust settles to they can figure out what terms to use so they don’t offend anyone.) Take a few minutes to Google “person first language” and you can see the conflicting blog posts and flame wars for yourself. This is an issue that a lot of people are seriously upset about.

For the most part, I don’t care about this argument. (My son is old enough that I remember the days when almost no one knew the word autistic at all, and we parents were thankful to meet someone who did. We were delighted to hear autistic instead of “rotten, little brat.”) My attitude is “pick a term, any term, and let me get on with my job.” But this conflict over vocabulary is actually harming our kids. I saw an example the other day on-line. A parent was posting on a message board and said “The teacher seemed wonderful and I loved the program they were offering my child. But then the teacher referred to my child as autistic. I was horrified. There is no way I’m going to leave my child in the care of such a prejudiced person.” So instead of taking the great program with the wonderful teacher, that parent pulled her child from the class and went looking for another program. I hope she found one just as good with a teacher who could correctly guess which term would offend the mother least.

A lot of people are putting a lot of time and energy into changing our society’s vocabulary. They are working hard to improve the lives of people and I applaud their effort and compassion. I just hope they know that changing the words people use, while it can be a step in changing society, is not in itself enough. Changing our vocabulary without changing our attitudes is like putting up new wallpaper on rotten walls. It might look better, but in reality, the problems are all still there, lurking under the surface.

– Cassie
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The February Dive

Just a word of caution: the grades of kids on the spectrum (and other kids with organizational difficulties) tend to dip this time of year.

During the first few months of school, we are focused on getting a good start to the new year – students, teachers and parents alike.  We’re all on the lookout for difficulties.  Teachers know they’re going to have to help students adapt to their new classroom.  The kids are doing their best to live up to the new expectations placed on them, from social demands, to learning how their classroom works, keeping their work organized and turning it in on time, and keeping their cool as best they can.  Parents are on top of homework and schoolwork, are working with teachers to solve problems, and are trying to keep everyone’s emotions in check, including their own.  All parties involved are on their toes, trying to make this school year work.

For most kids things tend to calm down a bit over the next few months.  They learn the ropes in the new classroom and come up with some strategies to help them survive the worst of the day.  Parents and teachers have adapted school and family life where they can and have established some sort of working relationship, (some work better than others.)  Homework routines are in place, parents and teachers are monitoring them diligently, and things kind of pull together.

Then the holidays arrive.  Suddenly, all the adults have a lot of things other than the kids to think about.  There are holiday programs, gifts to buy, cookies to bake, parties to arrange, decorations to be plastered over classrooms and homes, and holiday vacations to arrange.  School is still a priority – older kids have finals to take, and teachers are still trying to cram in as much learning as they can, but there’s a lot of pressure and stress on the adults who are trying to do everything they normally do plus the holidays, too.  It’s hard on them and their brains tend to melt a little around this time. 

Fortunately, winter break arrives.  Parents and teachers can ignore school for awhile and concentrate on the rest of their lives.  Kids are cut loose.  They may have family commitments they have to meet, but for the most part the adults are so busy that the kids get a lot of free time.  They get to relax, put in a few too many hours on video games, and do what they want for a change.  Life is good.

The holidays come and go.  The adults, exhausted by the demands of the holidays, crash into a heap of exhaustion.  They are tired.  Most of the women go into a brief coma.  The men enjoy the peace and quiet.  Again, the kids are getting a lot of free time and they’re okay with that.

Unfortunately, all good things come to an end and winter break does, too.  Teachers go back to work.  Parents peel their kids off the front of their computer and TV screens and throw them on the school bus.  The adults are ready for life to get back to normal.  The kids, however, are not.

Going back to school in January is not like starting a new school year in the fall.  The kids have had enough time off to get out of the school routine, but not enough time away from the classroom to build up that “new school year” energy.  It’s only been two weeks.  They still remember that school means a lot of work.  They know that extra video game time is ending and a bunch of drudgery is beginning.  Even the most dedicated kids can be a bit slow moving when it comes to school work in January.  They may not get all their homework turned in.  They may not study for tests as much.  This is a time of year when our kids aren’t at their best organization-wise, and it shows.  Their grades start to dip.

Parents and teachers don’t always catch the downslide.  They’re often not monitoring the kids quite so closely this time of year.  Things were going well in the fall and the kid didn’t need extra oversight then, so they assume he doesn’t need it now either.  It’s not until progress reports come out in February that everyone realizes there’s a problem.  Junior’s (or Junioress’) grades have taken a bit of a tumble.

If you’re like most mothers, this is when your guilt goes into overdrive.  You stand there, looking at your child’s progress report, and realize that you’re the worst parent in the whole world.  You’ve ignored your child and this is the result.  All his carefully nurtured organizational skills and homework routines are in shambles and it’s all your fault because you didn’t love him enough to monitor his homework as carefully as you should have.  He would be looking at a life of flipping burgers except since his social skills aren’t that great and he can’t handle noise, he won’t be able to hold even that job, so as a result he will starve to death. 

(Note that I said “like most mothers”.  From what I can gather, fathers just thump the kid on the back of the head and tell him to do his darn work, then come up with ways to make sure he does.  They seem to move from recognizing there’s a problem to coming up with a solution without spending near as much time in the “Oh my God, I’ve ruined my child!” stage as we mothers do.  There’s a lesson for us there, moms.)

February is often no fun.  We figure out that our kid needs help getting back on track and we knuckle down to it.  We spend March (and sometimes a lot of spring break) getting him caught up with school work, and the rest of the school year getting his grades pulled back up to acceptable levels.  Our guilt gets worn back down to normal levels (to where we think our child may just succeed in life even though he was blessed with a totally incompetent parent) and we make a final dash for the finish line and summer vacation.

Here’s a tip, from someone who’s been through this cycle many, many times.  Even if your child did really well last November and December, check his homework for the next month or so.  Make sure he’s writing down all his assignments and actually turning them in.  If he got to the point last fall that he didn’t needed your help studying for tests, double check his knowledge anyway.  It’s worth the twenty minutes it takes to run through his spelling words or to ask him questions from his study guide.  If you’ve got any doubts on how he’s performing at school, drop a note or make a visit to his teacher.  The effort it takes to help him get a strong start back to school in January is a lot less than the time, energy and tears you’d both spend getting his grades back up after they plummet. 

It might also free up some of your Spring Break, too.  That way you’ll have more time to nag your child to quit spending so many hours glued to video games, and enough room on your brain circuits to handle most moms’ other big worry that time of the year.  Yup, the dreaded “oh-my-goodness, bathing-suit-season-is-right-around-the-corner-and-I-haven’t-exercised-in-the-last-six-months” guilt.  Sorry, I’ve got no good ideas on how to help us all through that one. 

– Cassie

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Rights and Wrongs

As parents of kids with autism, we spend a lot of time talking about our children’s rights.   “It’s my son’s right to a free and appropriate education.”  “It’s my daughter’s right to be fully included in a general education class.”  “Be sure you get a lawyer so the school doesn’t trample your child’s rights.”  Search the internet for the words “autism” and “rights” and you’ll be flooded with results.  We spend a lot of bandwidth learning about our children’s rights and how to protect them, as we should.  But why do we rarely hear parents of autistic children talk about the rights of kids who don’t have disabilities?

For instance, I’ve heard parents say, “My child has difficulties with auditory processing, so he needs assistive technology.”  But I’ve never heard, “My child screams so much in the classroom that the other students can’t hear the teacher and it’s affecting their education.”

Frequently parents tell me, “The school needs to implement a behavior plan so my child learns how to use his words instead of hitting.”  Only twice have I heard, “How can we stop my child from hitting other kids?  They shouldn’t be afraid to come to school.”

I’ve heard, “The teacher isn’t helping my child enough,” but not, “If my child is taking up 35% of the teacher’s time, how are the other children getting the attention they need?”

I’ve even seen, “My child has special needs.  She should be on the cheerleading squad even if she isn’t as good as the other girls.”  I don’t think that mom ever thought, “There are only six cheerleaders at our school.  If I insist my daughter is on the team, is she depriving another girl who deserves to be there because of her abilities?”

Note that I’m not talking about when the other kids in a classroom have to suffer inconveniences so that our children can be there.  Not being able to take a peanut butter sandwich to school because another child might die is not a huge sacrifice.  No one has the right to put someone’s life in danger just because their parents can’t figure out something else to put in their lunchbox.  If a child disrupts the classroom occasionally or the disruptions are mild and manageable, the rest of the students can learn to ignore it and move on.  No, what I’m talking about is when the accommodation of our children means other kids are harmed.

The rights of individuals with disabilities are precious, necessary and just as unalienable as those of people without disabilities.  We fought long and hard to ensure that those with special needs have as equal access to the benefits of our society as we can provide.  If we parents don’t defend the rights of our disabled children, our children will lose out.  

But should other people’s children be made to suffer so that our children benefit?  Are children with disabilities the only ones who have rights?  Is one six year old less of a person than another?  

Parents of typical children are expanding their viewpoints and insisting that all children are important, valuable and to be protected, even those with disabilities.  Surely, we parents of kids with special needs can do the same.

– Cassie

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Tips for Parents on Surviving Your Next Parent/Teacher Conference

Quick question — what scares you more?  Parent/teacher conferences or root canals?  It can be a hard choice.  Both can be excruciating, though with one of them you get great drugs to help deal with the pain.  True, a root canal may leave you looking like a drooling, swollen chipmunk for a while, but will crying for three days straight leave you looking any better?  When you get down to it, both are good and necessary but neither is much fun.  The big difference between them is that though there’s not a lot we can do to make invasive dental surgery more comfortable, how we approach conversations with the school can make parent/teacher conferences a lot less painful and much more useful.  Here are some of the things we can do to improve our time spent sitting across the table from teachers.

  1. Relax.  No one is judging you or your child.  The point of parent/teacher conferences is to discuss your child’s difficulties and how to address them.  Before you and the school can figure out how to help your child, you have to agree on where he’s struggling. 
  2. If the school says your child is having a hard time, they’re not giving up on him.  They’re also not telling you to go home and fix him.  They’re keeping you informed so that together you can come up with a plan to help him.
  3. Just like any other place of business, schools use a lot of jargon.  If they use terms or abbreviations, or refer to programs that you’re not familiar with, ask them to explain what they mean.  They’re not trying to be confusing or condescending – they just forget that not everyone is as familiar with their school as they are.
  4. Take a list of any concerns you might have to the meeting.  Sometimes it’s hard to remember everything you want to talk about.  If the teacher doesn’t have time to go over the whole list with you during the meeting, schedule a time when you can meet again.
  5. Sometimes when we get negative information about our child, our attention diverts to dealing with the information instead of what’s happening at the meeting.  Our brain can start to spin-out and we don’t listen and respond as well as we’d like.  It can help to focus on just getting the information from the teacher at this meeting.  Then you can go home, think about it – whether you agree or disagree, decide what you think should happen next, and when you’re ready, schedule another meeting with the teacher so you can discuss it more and come up with a plan of action.
  6. If the teacher says your child is struggling in a particular area, ask her how he’s doing compared to the rest of her students.  Regardless of how other kids are doing, your child needs help, but if a lot of other kids are also having difficulty, you’ll know that your child isn’t seriously behind.
  7. If the teacher says your child is having a hard time with something, ask if this is a big problem or a little problem.  Some teachers don’t tell parents about little problems, preferring to take care of them themselves inside the classroom.  Other teachers tell parents about all difficulties because they’re trying to keep parents informed.  Knowing what are big problems and what are little helps parents prioritize their efforts and keeps them from stressing out over little things. 
  8. Also, be sure to ask the teacher why your child is doing poorly.  For example, if he’s failing math, is it because of his homework?  If so, is he not turning in his homework?  Is he forgetting to write down the assignment or check his assignment schedule?  If so, he needs help on his organizational skills.  Or is he not doing the homework because he doesn’t understand how to do it?  Then he might need tutoring.  Or is he doing his homework but not doing it the way the teacher wants him to, like not showing how he solved math equations?  Pinpoint the specific causes of his difficulties so you can address them.
  9. There are a lot of ways parents can help their child at home.  Make good use of your child’s teacher’s experience – ask her how you can help your child with his homework and how to improve his skills.  She can help you figure out how to get the most out of your efforts at home.  Resource and special education teachers are also sometimes willing to answer your questions, even if your child isn’t in their classes.
  10. Teachers generally are very willing to communicate with you throughout the year.  They don’t always have time to meet with you if you just drop in, but if you schedule an appointment with them, they’re very available.
  11. Remember your child’s strengths as well.  Don’t just focus on his weaknesses and difficulties.  Every child has difficulties in one area or another.  Negative information your child’s teacher gives you is the starting point for helping your child improve – it’s not a pronouncement of doom.  Take a few minutes after your meeting to remind yourself of your child’s great qualities.  You guys are going to get through this.
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How Not To Get Trolled On A Video Game (Tell Your Kids)

The below is written by my beautiful, talented teen-aged daughter, Fang Zupke.  Yes, “Fang” is a pseudonym that she picked out herself, and no, we don’t need family counseling but thanks for the suggestion.

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I thought this would be a good time to talk about trolls in online gaming, since I know sometimes people get picked on in the games. You guys and gals, pass this on to your younger siblings, or any other kids you know, and parents looking at this, make sure to tell your kids about it. You don’t want them ending up getting trolled.

First off, let me make this clear: If you’re not old enough to be playing the game, then /don’t/ play the game. I can’t stress this enough; if you’re an eleven year old playing TF2, you shouldn’t be there. And you’re going to get trolled for it.

A troll is a person on the internet who tries to get a reaction out of people by doing various things. Sometimes it’s by breaking the rules in the game, sometimes it’s getting on your case about something else. Not to be confused with someone who’s actually trying to help, or is just doing something relatively harmless that you don’t like. But not to worry! I have a few tips that can help you avoid getting trolled:

1. Don’t use a mic. It keeps you from saying anything embarrassing, and it also keeps trolls from giving you a hard time about your voice.

2. Be polite. If you’re rude and yell at your teammates, or yell over other things in game, there’s a word for that. ‘Butthurt’. You’ll get it thrown at you a lot, and it attracts trolls. Trust me, you don’t want that.

3. Don’t complain. If someone’s breaking the rules, ask them politely to stop. If they don’t, let the admin deal with them. There’s not really anything else you can do.

4. Try to stay positive. Sometimes trolling is just a few guys having fun instead of trying to be mean. You can try to have fun, too. And staying positive means not letting them get to you and giving them the reaction they want. They /want/ you to get angry, and they want you to yell and threaten! Don’t give them that.

5. If all else fails, then leave. Just leave the server, and avoid the person or people who are trolling. They’ll say you’re ‘rage quitting’, but really, it’s the quickest way to defuse the situation on your end. If they follow you, then just keep going, and report them.

Hope I could help some.

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Booting The Aide To The Curb

Last year my son got As on his report card.  This year he’s barely holding on to Bs.  I couldn’t be happier.

Last year my son had an aide who was a very nice lady.  She helped him write down his assignments.  She reminded him to turn in his homework.  She took notes for him when he was too tired.  She was a fantastic aide, who through absolutely no fault of her own, was perpetuating his dependence on her.  At one time she was very necessary, but by the end of last year I’d decided her help was now a hindrance.

So, this year, we let her go.  We cut my son loose and tossed him out of the boat to sink or swim in the mainstream world with no support (other than incredible teachers, an ever-watchful case carrier, an understanding school administration, and a nervous mother who checked his backpack each day.)

Guess what?  He’s doing fine.  He’s doing more than fine.  He’s keeping track of his assignments, getting his work turned in, asking questions in class and managing all his school responsibilities himself.  Is he doing as well as he was last year with the aide’s help?  No.  He’s doing better.  His GPA is suffering, but he’s learning independence in leaps and bounds.  Now I know that in a few years when high school ends, he’s going to be able to make through college, where there are no aides and no IEPs.  I know he’s going to be able one day to hold down a job, where they’re not going to allow his mommy to come in and check up on him each day.

Our experiment has been a success, but if my son had crashed and burned, that would have been okay, too.  The school was ready to supply an aide if it turned out he still needed it.  Whatever damage would have been done to his grades, he’d have survived it.  We’d have learned what help he still needed and what he could do on his own.  We’d have known that we were pushing him to reach his potential as quickly as we could, that we weren’t coddling him into a lifetime of dependency.

Goodbye, sweet aide.  You’ve served us well.  Thank you for getting him ready to make it on his own.

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