Controlled vs. Uncontrolled Anger

Controlled vs Uncontrolled Anger image

Here’s a great question to ask the Aspie kid in your life.  ”Who is the more effective superhero, Hulk or Batman?”  This question is a good way to illustrate uncontrolled vs. controlled anger.  Batman is a more effective superhero even though the Hulk is much stronger and Bruce Banner (Hulk’s alter ego) is a genius.  Batman and Hulk are both motivated by anger, but because Batman controls his anger, he is more often able to attain his goals.

Note: if your Aspie is a comic book junkie, this question will probably result in a passionate discussion/argument because there’s probably no chance that you know a tenth of what your Aspie knows about comics.  So, if you don’t know what color Hulk was originally (not green) or if Bruce Wayne ever finished university (I don’t think so), you might want to check out the quick-read references below.  There’s a good chance your Aspie will still argue but then you can tell him or her to argue with the wiki instead of with you, thereby helping to launch him into the adult Aspie world.

http://marvel.wikia.com/Hulk_(Robert_Bruce_Banner)

http://dc.wikia.com/wiki/Batman_(Bruce_Wayne)

PS — As a side note, if your Aspie is a girl and she gets mad about seeing Aspies referred to as male, or the term “you guys”, tell her to get over it.  Chance are that she’s going to often be drawn to mostly male environments/interests/employments/friends.  Tell her if she wants to hang with the guys, she’s got to have a tough skin or she’ll get run over.  As a female ex-engineer and the daughter of a female construction worker, I know what I’m talking about.  Being girlie is great, but we can’t let it limit us.

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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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Social Expectations

 I don’t know why it’s so hard for me to remember that my goal is to teach my child how to socialize with other people so that when he wants to or needs to, he can.   It is not, nor can it be, to have him socialize as much as I want him to.

My son enjoys his solitude.  He likes being on the computer and reading interesting facts.  His interaction with his siblings and parents satisfy most of his social needs.  He has a few friends that he occasionally spends time with and that’s enough for him.  He’s happy.

His social skills are enough that he can navigate high school.  He can go to the movies, buy something at a store, and interact politely with people in the community.  He has enough social skills to meet his immediate needs.

So why do I keep pushing him to do more?

Because I want him to be safe.  I want him to be able to tell when someone is lying or taking advantage of him.  I want him to know when a girl is receptive to his romantic interests and when to leave her alone.  I want him to be able to spot a bad relationship or friendship and know how to avoid them.  I want him to be loved, have friends and not be lonely.  I don’t want him to be hurt, not ever.  But that’s not realistic.

The fact is, our children are going to get hurt.  Our children with special needs will get hurt and our typical children will, too.  They’re going to get dumped, broken hearted, cheated out of money, and maybe even beat up.  That’s a sad fact of life.  It’s part of growing up.  All we can do, as parents and teachers, is try to teach them how to make the best decisions they can and what to do when they make mistakes.  We can teach them to try to figure out why they made a mistake and how to avoid making it again.  All we can do is try to teach them how to learn as they go along, just like we do, just like everyone does.  The fact that they’re starting with less skills than other people is regrettable, but it’s something we can’t change.  All we can do is move forward from where they are now.  But in the process, we have to try not to make them miserable.

So, the question is: when do I push my son to be more social and when do I leave him alone?  When do I accept that this is who he is?  After all, if I continually push him into social situations that he doesn’t want, I’m not letting him learn to make his own social decisions – who to hang out with and when, also an important skill.  I don’t want him to believe that he has to stay in the company of people he doesn’t want to be around.

Generally my solution is a compromise.  I insist that he participate for a while in particular social activities, then when that time is up, allow him to choose when to leave.  Sometimes he stays; sometimes he goes.  That way he has the opportunity to learn whatever social skills he will from the engagement, but he’s not continually forced into situations where he’s uncomfortable or downright miserable. 

The trick to this, is for me to remember that when he wants to leave, I have to let him leave.  And I have to be okay with that.  I have to remember that what I like may not be what he likes.  I have to not be unhappy because he’s choosing solitude over society.  I have to give him the dignity of making his own social choices and allow him to develop the skills to do it. 

And my fears for his safety and happiness?  I guess I have to deal with them just like most other parents do.  A lot of hope, a little delusion, and lending a hand when he needs it.

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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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Bullies Lie

Two important things I learned while listening to Jennifer McIlwee Myers presentation about depression, anxiety and kids on the spectrum are “Every day that you survive, you win against the bullies,” and “Depression lies.”  Two very important concepts that when I thought about them later, led me to a conclusion that would have been really helpful for me to know in fifth grade.  Bullies lie, too.

Bullies feed off their victim’s pain.  They revel in the power they have over other people, the friends who follow them blindly as well as those they’re tormenting.  By throwing people out of the group, they shore up the walls that divide the “in crowd” and the “out crowd”, and build up their vision of themselves and where they think they fit in society.  The fact that they can make someone cry proves (in their eyes) that they have control and power.  They love the feeling and they have no problem doing whatever it takes to keep generating that feeling, including lying.

I don’t know why it didn’t dawn on me when I was a child that just because someone (who I knew was mean) told me I was fat or ugly, that it didn’t mean I was fat or ugly.  That they would say something, not because it was true, but because they knew it would hurt.  That they would say anything to cause people pain.  That they would poke around until they found someone’s tender spot, and once they found it, would strike again and again like a cobra, precisely where they knew it would hurt the most.  By triggering the victim’s own self-doubt, he’d keep punishing himself, over and over, long after the bully had sauntered away smirking.

Let me reiterate – bullies will say or do whatever it takes to get you to doubt yourself.  They want to see your pain.

So how does knowing that affect what we teach our kids about protecting themselves against bullies?

We need to tell them that bullies are manipulative, lying jerks who are really good at what they do.  You don’t believe them.  You don’t take what they’re saying to heart.  You do whatever you have to do to get away from them, and then you disregard what they’ve said.  That’s not the same as ignoring the bullies – advice that has been handed down since time began and doesn’t work any better now than it did when we were kids.  You can’t tell a kid to ignore someone’s taunts if he or she believes they might be true.  If one of the tallest kids in a class is being teased about being short, he’s going to think his tormentor is an idiot.  But if he’s teased about being too tall, he may buy into it.  Instead we have to teach our kids that bullies will pick at us until they find the things that hurt us most, and that’s what they’ll attack us with, even if they have to make something up.

Schools and parents are putting a lot of effort into anti-bullying programs these days and that’s a good thing.  The programs are having an effect and the number of bullying incidences are decreasing.  But the programs aren’t going to make bullying disappear.  Bullying is an ugly aspect of human nature, and it’s never going to go away.  As parents and teachers, we have to teach our kids more than “be nice to each other” and “tell a teacher.”  We also need to teach them resiliency.  We need to give them the tools so that when bullying does occur, as it will, they can survive it.  They can let those hateful words slide right on past them instead of letting those nasty little swords hit them where they live.

Bullies lie.  Make sure your kids know it.

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The Weirdest Kid in the Room

Imagine you are a child and you’re a bit different from your classmates.  You’re not sure why you’re different or how you’re different, but you know you are.  Things everyone else finds easy to do, you don’t.  The teacher reads a story to the class – it’s about a cow who wants to jump over the moon, so she tries and tries and tries until finally she can.  The teacher asks you what the author’s message is.  You say, “That the cow was stupid.  Everyone knows cows aren’t strong enough to propel themselves outside our atmosphere and all the way to the moon.  Besides, the cow would suffocate with no oxygen.  People think that if you go into space without a spacesuit you would implode or freeze to death, but actually the water evaporates from your body and your blood starts to boil.  It’s from the absence of air pressure.”  Some of the other kids laugh at you and the teacher gives you this really funny look.  She says, “No, honey.  The author was trying to tell us that if you can’t do something, you should keep trying.”  You hear one of your classmates whisper to a friend, “He’s so weird.”

Now repeat this scenario and other similar situations, over and over, for your entire school career.  Add to it the fact that you can’t run well, or throw or catch a ball.  No matter what you wear, the other kids say you dress like a dork.  When they tell a joke, you don’t get it and when you try to act the way they do, they laugh at you.  Some of the kids are nice, but no one ever asks you to come over to their house or go to a party.  Your mom quit inviting your classmates to your birthday parties because none of them ever came.  Imagine always being the weirdest kid in the class.

That’s what it can be like for our mainstreamed children.

Mainstreaming is when students with special needs are included in the general education classroom – special ed kids attending a regular class with typical kids.  Depending on the child’s needs and their parents’ desires, the student may be mainstreamed all day or part of the day.  He or she may study their core academics in a special education classroom and take the rest of their subjects in general ed, or maybe it’s the reverse for our kids who are high academically but benefit from spending part of their day in a less stressful environment.  However it’s arranged, the goal of mainstreaming our kids is to not only give them the same educational opportunities as the rest of the students, but to also have them spend as much time as possible around typical students to improve their social skills.  The thinking is that it’s hard to learn the same social skills as typical kids if you spend most of your time around non-typical children.

Mainstreaming is fantastic.  If done properly, it works and our kids benefit.  There are pitfalls we need to avoid when constructing a mainstreaming program; specifically those of delusional thinking (“If I put my kid in with the normal kids, all the normalness will rub off on him and he’ll no longer be autistic.”), archaic viewpoints (“A special ed kid in my classroom for gifted kids?  I don’t think so.”), and misplaced enthusiasm (“I want my child completely totally mainstreamed.  It’s his right, even if I am pulling him out of a specialized math class that teaches him at his academic level to put him in a class that’s working several years ahead of him.  The school can just work it out.”)  As long as we keep a realistic view of our children’s needs, abilities and goals, mainstreaming can work wonderfully.  However, even great mainstreaming programs have a flaw built into them.

I’m not talking about the fact that although most typical kids are wonderful, there are a few of them we definitely do not want our kids to mimic.  You know the ones – the obnoxious little brats you’d like to hang up by their ears but can’t because it’s illegal for adults to assault kids just because they’re toads, no matter what they said to your sweet little darling.  Nope.  Though having to deal with rotten kids is a flaw, that’s not it.  In fact, for the sake of this discussion, let’s take those kids completely out of the equation.  Let’s assume that all the school’s anti-bullying education and policies work completely and totally.  All bullies and bully-type behavior is removed from our mainstreamed child’s school day.  This is fantasy, la-la thinking, I know.  Unfortunately we can’t change human nature that much.  The schools are doing a great job, but no matter what they do, they won’t ever be able to completely erase obnoxious behavior.  But for now, let’s ignore that facet of childhood.  Even without bully behavior, mainstreaming our autistic children still has its downside.

The fact of the matter is, no matter how well we design our autistic child’s educational program, during the time he or she is in the general ed classroom, they will be the weirdest kid in the room.  The lag in their social skill development guarantees it.  Even if all the other kids and the teachers don’t point it out or make a big deal about it, those of our kids who are more self-aware notice it.  They may not be able to say exactly what is going on, but they do know that they’re always the last one picked at PE.  They know that the other kids understand things that they don’t – like how to join a game on the playground, what’s cool and what’s not, and all that girl/boy interaction stuff.  They get that they’re different and that there are a lot of things that their peers are better at than they are, things that they really don’t understand at all.  They see the difference and they look for an explanation.  Unfortunately the one they often come up with is that they are stupid or weird.

So, what’s the solution?  Mainstreaming has a lot of benefits that we don’t want to lose.  Cloistering our kids in the special ed classroom (if that’s not where they need to be) is not the answer.  We can’t keep them hidden away just in order to promote their feelings of self-worth.  We need to put them out in the real world so they learn how to function there.  So how do we do that without having them end up thinking they’re defective?

We can’t change the fact that they are different from their peers, nor should we deny it or put too much emphasis on it.  Their differences exist and that’s it.  There can’t be any drama from us about it to our kids.  No wailing or gnashing of the teeth or laying blame on anyone.  Their autism is just a fact of life.  If we are accepting and low-key about their differences, then we help them along their path of accepting who they are.  

What we can do is try put some balance into our child’s perceptions.  He or she spends the majority of their waking hours in school, so it takes on an importance in their life that is out of perspective.  The social interactions of their school day make up an unusually large part of their social world.  After school, typical kids often hang out with friends or get involved with activities like scouting or sports or music lessons.  But a lot of autistic children don’t.  They may not have any friends and are often too worn out from school and homework to participate in group activities.  While typical children get to spend time in an environment they’ve chosen where they are socially successful and that validates their worth, our kids get to struggle through homework and listen to their parents tell them what they did wrong in school that day and what they need to do differently tomorrow.

So as parents, we need to work extra hard to make sure our kids have opportunities to do things that build their sense of self-worth, like having friends, succeeding at goals, skill building and having people value what they do.

How do we do this?  That’s a big topic, one that’s too big for this already too long blog post.  So I’m only going to outline a few ideas here.  Rest assured, we will revisit this topic in the future, but for now, here’s a quickie snapshot.

The building friendship part isn’t always as hard as we make it.  Yes, we’ve got to do the “have cool toys and fun parties, etc” thing so kids want to come to our house and hang out with our kids.  But we also have to try to attract kids who our child will enjoy.  A lot of parents I talk to say, “I keep inviting his classmates over, but it doesn’t work out.”  They invite their child’s typical classmates over, the same kids who don’t work out as friends at school, and try it again at their home.  Guess what?  Generally, it still doesn’t work. 

Instead, try finding kids who are similar to your child and/or enjoy the same things he does.  (Just like you find friends who are similar to you and like the same things you do.)   Someone who he can relax around, have fun with and practice the social skills you keep trying to teach him.  (A quick way to find other kids your child might like is to ask your child’s teacher for some recommendations, in her classroom and in others – including the special ed room.  She may know of someone whose mother is also looking for play dates.) 

And when you do get them together to hang out, make sure they have something to do that they will both like.  Don’t make the success of the afternoon rest on your child’s sparkling conversation, ability to figure out what his guest would like to do, and him actually spending time doing it.  If you think they may not be able to come up with something themselves, try to have some ideas in your pocket – at least for their first get-together.  For instance, if your child likes to draw and his guest likes Pokemon, maybe they can design and draw Pokemon together.  If your kid enjoys Legos and his guest is into dinosaurs, maybe they can build dinosaurs.  See what you can come up with.  Also, recognize that their idea of a good time and yours might be completely different.  They might be perfectly happy being in the same room together, doing completely different things and not talking to each other.  If at the end of the day, they both enjoyed themselves and would like to do it again, it was a successful play date.

You can also help your child get involved in an outside activity where he gets to do something he’s good at and likes.  Community groups based on something he’s interested in, like model train clubs, science fiction book clubs or astronomy clubs are good.  Classes where our kids learn a cool skill are great for giving them something tangible about themselves they can feel proud about.  Groups who do community service are also a great bet for our kids.  They’re always looking for volunteers and they often offer opportunities to learn something new.  If your child learns to knit so she can make scarves for the homeless, not only has she learned a skill, she can also be proud that she helped other people.     

The bottom line is that our mainstreamed kids are different than their classmates.  If we’re not careful, our children can grow up thinking they’re weird or defective.  As parents, we need to make a concerted effort to keep their self-worth intact.  We won’t always be successful, but helping them make one or two connections, finding someplace where they’re valued, can make a heck of a difference in their lives.

This is an important topic and we’re going to keep exploring it in future posts.  Until then, let me know some of the ways that you’ve helped your kids maintain their self-esteem.  I’d love to hear them.

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Because I Said So

Take a kid who’s smart, add a dash of “highly focused on certain things”, a few handfuls of stubborn, a little bit of emotion control difficulty, and some “doesn’t have the social skills to figure out there are better ways of getting what he/she wants than arguing.” Mix, dress, and let sit in front of a computer for a few days. What do you get? A kid with Asperger’s/high functioning autism.

Yes, I know, a lot of kids argue with their parents, not just those who are on the spectrum. But our kids take it to another level. They are extra-good at arguing. They are smart enough to come up with good reasons why you should let them do/have what they want, they aren’t good at seeing other people’s point of view, and they are persistent enough to drive you to insanity. If you’ve got a choice between arguing with a kid with Asperger’s/HFA or a mule, pick the mule. You might not settle the argument any faster, but at least you can in good conscience swear at the mule.

But you already know this. You’ve had the arguments about what your child will eat, what he’ll wear, going to school, doing homework, playing video games and whether it makes sense for him to give up his room to Grandma when she visits (“but if she sleeps on the couch she’ll be closer to the bathroom and I can also make sure she doesn’t mess with my Legos.”)

You know your child is strong-willed. For his sake, I hope you are too.

Our kids need us to be just as stubborn as they are. Jennifer McIlwee Myers, author of “How to Teach Life Skills to Kids with Autism or Asperger’s” has a great way of putting it: you need to outstubborn your child. You cannot let them wear you down. She’s right. You have to be strong enough to set the rules in your house and strong enough to enforce them. If you are not the authority figure in your house, you are cheating your child.

Kids need to learn there are limits in life. They need to know that society expects certain behavior out of them. I’m not just talking about the little rules, like always use your napkin and don’t bore people by talking incessantly about light bulbs. I also mean the big stuff, the stuff that can seriously affect their lives. If kids are lucky, their parents teach them these limits. That’s the easy way. The hard way is when their parents don’t and leave their kids to deal with whatever society dishes out to those who break its rules.

For instance, if we teach our kids that they can wear us down and we’ll give in if they argue long enough, when they’re grown they’re going to have a rude awakening the first time they try it with a police officer. Mr. Officer isn’t going to throw up his hands in disgust, walk away and ignore whatever our sweet Johnny is doing. More than likely Mr. Officer is going to bonk Johnny on the head, put him in handcuffs and take him to jail.

Likewise, if we allow our kids to refuse to do or weasel out of homework and chores, they grow up thinking they don’t have to live up to their responsibilities. While that may keep the peace at home, it doesn’t do our kids any favors once they’re adults. Employees who neglect their work or whine excessively turn into ex-employees. College students who don’t do their assignments fail classes. Debts that don’t get paid can land us in a lot of trouble. In the real world, sometimes we have to do what other people tell us to, whether we like it or not.

If our kids can get what they want by being more stubborn than we are, they also don’t learn to respect other people. Why does it matter what other people want if I can just get around them? If I throw tantrums to get out of my responsibilities at home, I learn to throw fits to get what I want. If I ignore my parents when they tell me to do things, I learn that ignoring people works. If never-ending arguments eventually get me what I want, then that’s what I’ll do. If you don’t teach your child to respect you and other people, where do you think he’s going to learn it? As an adult? From the legal system after his date tells him no and he doesn’t believe her? In a bar when he argues with a big, hairy, scary dude and ends up in the hospital? Or when he lives out his adult life alone because no one can stand to be around him?

I am not saying that teaching our kids boundaries and limits is easy. It’s not easy with typical kids and it’s even harder with kids on the spectrum. It’s exhausting and it takes a really long time. Years. Not only does it mean putting up with the fallout after we tell our kids no, it also means we have to walk the tightrope between being an authority figure and a control freak. We don’t want to squash them completely. We need to allow them to make some decisions and negotiate sometimes, while at the same time retaining the ability to make no mean no – whether they argue or not, whether they pout, tantrum or try to outwait us. For their own good, we have to be the person in charge.

My solution? My kids can give me their two best reasons why they think the decision should go their way. Then I decide and explain why. If they don’t like it, they can argue all they want – quietly in their bedroom, with the door shut so I don’t have to hear them. Disrespectful behavior results in unpleasant consequences. I may not be able to take the argument out of the Aspie (or the teenager), but usually I can make the argument not worth pursuing. My solution hasn’t always been easy to implement – it took years for my kids to figure out that I meant it and more years for them to develop the self-control to avoid getting into trouble. We went through a lot of tears and a lot of notebook paper. (Fifty sentences at a time: “I will do my homework without arguing.”)

Does my solution work? I don’t know yet. I know I did not get to be the nice, sweet mommy that I had planned – the one who always lives in peace and harmony with her children. On the other hand, my kids do their homework now without me telling them to. Arguing with teachers has gone down 95%. (We’ve moved past writing sentences and are now on five paragraph essays.) And my children have discovered that at 6’3” they’re not too big to stand in the corner for time out. They argue enough with me that I know they’re not browbeaten wimps and that they’re developing along normal teenager timelines. And amidst the all the “have-to”s of life, we still have a lot of “want-to”s, hugs and good times.

Is that success? Is that good enough? I don’t know. I guess we’ll find out.

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Successful Holidays

As a parent of a child with Asperger’s/high functioning autism, the key to getting through the holidays is to remember your goals:

1)      Survival.  If the kids live, you and your spouse make it, and all sundry friends and relatives are still kicking by the end of festivities – you’ve had a successful holiday.

2)       Everyone makes it back home again.  If you came home with the same number of kids you started out with (and they’re actually yours) and your spouse didn’t flee to someplace more peaceful, like a war zone – successful holiday.

3)      No serious bloodshed.  If no ambulances or police cars were called and no one was admitted to the hospital – it was a successful holiday.  Emergency room visits don’t count as long as everyone comes home with the same number of functioning parts they started out with.

4)      Property damaged caused by your family falls within your budget.  If they break it and you can pay for it – yay.  Successful holiday.

5)      No friends or relatives that you want to stay in contact with are so offended that you can’t mend the relationship.  Successful holiday, with bonus points if the people you didn’t like anyway decide to quit calling.

6)      Very important – You still like your children and spouse, and they still like you.  Not just love – like.  As in, after you’ve had a day or two to let your brain unmelt, you’d enjoy each other’s company again.  Total win – successful holiday.

            That’s my list.  I may have missed one or two items, but overall I think it’s a pretty complete and realistic set of goals.  Note the things that weren’t on my list:

1)      Having your kids eat everything on their plates at Grandma’s house.  If your kid is a picky eater, bring along some food he likes.  Stand up to Grandma, bypass whatever it is that he thinks is disgusting, and get something nutritious into him that won’t cause a fight.  It’s far better to have to deal with a disapproving grandma than to have to clean up a screaming, puking child.  Trust me on this one.

2)      Having your child spend every minute socializing.  He really can’t handle this.  You know how stressful the holidays are on you – they’re way harder on him.  Especially the socializing.  Find a time when he’s in a decent mood, introduce him around to everyone and have him interact to the best of his ability.  Then keep an eye on him.  When you think he’s lasted as long as he’s going to, give him an out.  Let him go someplace quiet where he can do something he likes and he has some control.  Don’t send him in to watch TV with his cousins, because if they aren’t watching what he wants to watch, there’s going to be a fight.  Instead, let him play with his favorite things (you did bring these along with you, right?)  A book that captivates him, a handheld video game, his action figures, his blankie – whatever it is that makes him happy and de-stresses him.  You want something that’s going to disconnect him from the world around him for a while and let him center himself.  Personally, I am not above buying something new for this purpose.  A little bribery so I can visit a little longer with Grandma?  Oh yeah.  Totally worth it.

3)      Your child is charming and polite to everyone.  Actually, this is a great goal – it’s just not very realistic.  You can keep this goal and work on prepping your child all you want, so that one day he can be charming and polite to everyone.  But don’t get your heart broken if he’s not quite ready for that this year.  As long as his social skills are improving, don’t be too embarrassed if he does something other people consider rude or odd.  It takes a strong parent to do this, but it’s really important.  If he throws mashed potatoes at Auntie’s cat, just think of last year when he threw the gravy bowl at the cat.  See?  Progress.  Last year was a broken antique, potential injury to the cat, and gravy everywhere.  This year, it’s just mashed potatoes on the wall.  Sometimes our kids will do things that embarrass us, but don’t dwell on it.  Remember how proud you are of him too.  Apologize, work on teaching him not to throw things in the future, and make sure to buy Auntie’s cat a really awesome Christmas present.

4)      Compare your child to everyone else’s kids.  Don’t even go there.  Yeah, their daughter will be a gymnast competing at the state level and their son will be finishing his Eagle Scout award six years early.  They’ll be going off to ivy league colleges with major scholarships because they’re so wonderful.  Or they’ll be playing the cello at the White House’s Christmas pageant because they’re so brilliant.  Whatever.  First, remember that the parents are bragging.  All parents do this and it’s okay, but they aren’t going to tell you the struggles their kids are having.  If Junior almost didn’t get to go to start his career as a professional baseball player because they had that little thing to work out in court, you’re not going to hear about it.  Second, remember that your kid is accomplishing things too.  He didn’t start out where their kids did.  He’s got a lot to learn about life and he’s doing that.  He’s not only making progress – he’s succeeding.  He is remaking himself on a level that typical kids don’t learn to do.  Don’t ever sell him short.  Yeah, learning how to conquer his sensory difficulties to the point where he can eat a sandwich even if bread is squishy, isn’t something that’s going to make your friends sigh with jealousy.  But it’s important and he’s doing it.  Besides, you can always do what I do.  Casually mention something interesting your child did relating to one of his areas of interest.  “Oh yes, we finally convinced James not to do any more physics experiments related to medieval weaponry in the house.  Now he has a nice workspace of his own.”  This is way better than saying, “We threw the kid outside after he broke the window by shooting marbles out of his toy crossbow.”  See – it’s all in the presentation.

5)      Be the perfect hostess or guest.  Don’t kill yourself trying to make everything perfect.  Enjoy your family and friends.  That’s the point of the holidays.  If this Thanksgiving is the one where you end up eating graham crackers and peanut butter off paper plates on a card table while watching your kid’s favorite TV show, he’s going to remember it as the Thanksgiving that rocked because he got to spend it the way he wanted to.  He’s going to be happy.  You find something that will make you and the rest of your family happy, too – even if it’s not what you envisioned as the perfect holiday. 

So, go forth and have a wonderful holiday.  Tailor it to suit your family.  If anyone else doesn’t think you’re doing it right, they can bite rocks.  Do something that you all enjoy.  Take a camera and take a lot of pictures.  One day, believe it or not, you’ll look back at today with at least a little bit of fondness.  That’ll probably be sometime after you finish paying for all the stuff that got broken.

– Cassie

PS — If you like this post, feel free to forward a link to anyone you think  may benefit:  http://cassiezupke.com/2011/11/22/successful-holidays

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Blinded by Science

A year or so ago I had the wonderful opportunity to have lunch with several people who are prominent in the field of autism.   It was great.  I found myself at a big table, tucked inbetween a famous author (who has autism and isn’t Temple Grandin) and a researcher from a big university who was conducting studies about teaching social skills to first graders.  I know, awesome, right?  It was.  I was having the time of my life, just sitting there eating my chicken sandwich and listening to everyone talk.  I mean, what was I going to add to the conversation?  Here were a bunch of people who each knew at least twenty times what I did about autism and have the credentials to prove it.  I felt like a junior high kid who accidently wandered onto a college campus and sat at the senior’s lunch table.  I was keeping quiet and trying not to sound like an idiot or dribble food down the front of my shirt.

Then I heard the researcher sitting next to me (I’ll call him Dr. X) talking to the young man to his left.  The young man had Asperger’s and had said he was interested in finding a romantic relationship.  “Hmm,” said Dr. X, “that’s highly unlikely.  After all, the amount of adaptation you and your partner would each need to make in order to sustain a relationship is quite large.”  Or, to translate his academic lingo into the kind of words you and I use, “Sorry dude, but you’re too weird for any girl to like you and even if she did, it would never work.”     

Now, I know Dr. X hadn’t meant to be cruel.  He was looking at the young man as a statistic, as a subject in one of his studies, as a member of a population he was studying under a microscope.  He didn’t see the kid as a lonely, young man who wanted a girlfriend to snuggle; he saw him as ‘subject, 22 years of age, Asperger’s/mild autism, status: seeking relationship’.  He looked at him through the lens of what he knew about autism, and it never occurred to him that he didn’t know a tinker’s darn about people with autism.

Now, I’m not saying Dr. X is dumb – far from it.  Nor am I saying that the studies he’s conducting aren’t shedding valuable light on our methods of teaching first grader’s not to spit on each other, which as the mother of an ex-first grader I consider extremely important.  I’m sure Dr. X is doing a bang-up job and that our autistic kids will be better for his efforts.  What I am saying is that if you think folks with Asperger’s/autism rarely get married, you ought to climb out of your ivory tower and go for a walk-about.  Go find some real adult Aspies and have a look-see.  Before you start making statements (especially to impressionable young men) about the ability for ASRD folks to have a relationship, go study some of the hundreds of thousands of married Aspies out there.   

It’s not like adult Aspies are hard to find.  Just go to any science fiction/fantasy/historical convention in the world, throw a rock into the crowd, then go talk to whomever yelps.  Or go chat with the folks at your nearest engineering firm, science lab or college gaming club.  (Or check universities where they have researchers who don’t have the social skills to know you don’t tell young adults that they’re too weird to get a date.)  In a time when Comic-Con makes the front page of CNN’s website every year, Aspie’s are pretty mainstream and very visible.  While by no means is every engineer, scientist, gamer or convention attendee on the Autism spectrum, Aspies show up in those areas in higher numbers than in areas like telemarketing, cheerleading, middle management and sales.  My point is, it doesn’t take a whole lot of effort to find them.

One of the first things you’ll notice once you start meeting these hordes of adult Aspies, is that a lot of them are female. Mothers, wives, grandmothers, ladies content to be single, and also a whole bunch who are looking for boyfriends.  If this is news to the folks running autism research programs it sure isn’t to the people who sell Princess Leia slave girl costumes.  They’ve known it for about 30 years now, which makes them youngsters compared to the guys who sell Lord of The Rings elf ears, Star Trek’s Yoeman Rand mini-skirts and boots, or Renaissance era bodice making supplies.  There are lot of Aspie/Geek girls out there making the best of what nature gave them in their search for romance.  

And they’re finding it too.  Take a minute to look at: www.offbeatbride.com, where you can find ideas for fandom wedding cakes (think Dr. Who, Transformers, Portal, Lego, Pacman, or mathematical equations); geek wedding favors (like personalized gaming dice, L-O-V-E computer keys, or space invader chocolates); and presents for the wedding party (like life-sized light sabers or cufflinks made from watch-parts.)  Check out Google to see what’s hot in geek wedding dresses.  Zombie brides are in, as are Steampunk, electronic-ala-Tron, superhero, Victorian gothic and the newly popular vintage carnival bride.  (Moms, take notes on all this wedding stuff – you need it one day, trust me.  And don’t be surprised when sometime after that, you’re out shopping for an R2D2 baby bonnet.  Better yet, learn to sew.  It’ll save you trouble in the long run.)  

Back to Dr. X.  The whole reason I’m telling you about this conversation is not to point out that he’s nearsighted when it comes to his research.  It’s to remind you that although our social scientists are a clever bunch of folks who are working really hard, they’ve still got a lot to learn when it comes to autism.  As far as I know, most of them haven’t even checked out the local Star Trek convention to figure out the proper protocol for picking up a Klingon chick or discovered the rules to one-ups-manship when it comes to quoting cult movies.  Until they can explain to me how leadership is determined in a Dungeons and Dragons raiding party, I won’t believe they fully understand social functioning in Aspie-land or the future of our kids.  And don’t you believe them either.  Take what knowledge you can get from them but don’t let their current understanding of autism discourage you or limit your child. 

I’m sure a lot of you reading are still thinking about that young man in the beginning of my story.  You want to know if the poor kid went away thinking he was a mutant who’d never find a sweetheart.  (And you want to kick Dr. X in the shins.)  Don’t worry, I set the guy straight.  It wasn’t hard.  I just pointed to the folks on my right, the famous Aspie couple who’ve made a living the last several years on the lecture tour, talking about their lives together and their relationship.  That boy has got a lot of examples of happy couples out there for inspiration.  Don’t worry, somewhere out there a cute little nerd-girl is waiting for him, Pokemon costume and all.

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