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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Job Training Ideas For People With ASD

Building skills in our kids gives them more options, increases their abilities to problem solve, and raises their self-confidence. Also, the more we expose them to different work environments, the better they can decide for themselves what they’d like to do with their lives. Plus, some of them may not be able to keep a full-time job, but they might be able to run their own micro-business that may at least give them spending money and keep them occupied.

Check out SEEDS: http://www.kickstarter.com/projects/633192035/seeds-for-autism-sewing-our-way-to-independence It’s a job skills program for people with autism, where they buy thrift store clothing, refashion it and sell it.

Another idea: I’m starting to have my daughter (who has fibromyalgia – weakness, pain, fatigue) and my son (Aspie) partner to refinish/repaint/repurpose thrift store furniture.

I bet with some creative thinking, we could come up with all kinds of ideas for things we can teach our kids/young adults that would improve their abilities to support themselves and to live as independently as possible. We may not be able to “cure” their difficulties, but any step in the right direction would make their lives (and ours) easier.

– Cassie
If this post is useful, pass it on.

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More Helping, Less Arguing

To parents of kids with Asperger’s or autism:
We can’t in one breath tell the world how horrible our lives and our children’s lives are because they have autism, then in the next tell our children that they are wonderful and shouldn’t feel bad about having autism. They won’t believe us.

To people with Asperger’s or autism:
You can’t tell parents of children with autism that your lives are really hard, that no one understands or accepts you, and that NTs/allistics are mean to you, then tell parents they shouldn’t try to fix or cure their child. They don’t want their children to suffer what you tell them is a horrible life.

Debating whether people with autism should be cured and if so, who should make that decision, (people with autism or the parents of people with autism), is a wonderful pastime, but at this point purely academic. As of now, no cure exists. However, there are a lot of people who have autism now who could use help learning how to survive in a society that is not prepared to accommodate them. More helping and less arguing would be nice.

Demanding that society is nice to people with disabilities (or working toward that cause) is wonderful and blessings on those who do it. Every person they convince is one more person who will help make the lives of people with autism easier. But believing that all of society will change is ignoring human nature. Please don’t let your passion to change society take precedence over teaching children in your care who have autism how to become as independent, capable, safe, and happy as possible.

Each of us has a limited amount of time and energy we can spend on autism. Let’s put those resources where they will do the most good.

– Cassie
PS. If you think this is helpful, pass it on to someone else.

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Self-Advocacy

It’s commonly agreed that the ability to advocate for oneself is important for young adults with Asperger’s/mild autism, not only in school and the workplace, but in many areas of their lives.  Parents and educators of teenagers discuss the need for it at great length, and you see the term crop up in message boards across the country.  Everyone agrees on the need for our kids to learn self-advocacy, but unfortunately, few people talk about what successful self-advocacy actually looks like.

The website Wright’s Law has a great definition of self-advocacy: “Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.” In essence, self-advocacy is the ability to run your own life.

What I particularly like about this definition of self-advocacy is that it provides a nice list of skills our young adults will need to learn.  I’m not saying it will be easy for us to teach them these skills or that this list is complete – it’s not.  But it gives us a good starting point.

I also like that it’s a little more detailed than the definition I typically hear when chatting with other parents, which generally runs along the lines of “Self-advocacy is knowing your rights and how to get them enforced.”  The problem with that definition is that it’s incredibly non-useful in the long run.  While people with disabilities absolutely do need to know their rights and how to access them, knowing your rights is not enough to get you through life.

For instance, let’s say you knew you had to get a job so you could pay your rent.  You decide what type of job you’d like to get and learn that it will be easier for you to get that job if you have the appropriate college degree.  So you head off to college, sign up and start taking classes.  So far so good.

Then your autism starts to trip you up.  Because of your auditory processing difficulties, your writing difficulties, your shaky understanding of social behavior, and your poor organizational skills, you’re having trouble taking notes, you’re not getting your assignments turned in and you have a hard time figuring out what the instructor is asking for on tests.  And since your self-awareness is low, you don’t know what your difficulties are and how they’re affecting your grade.  You are sinking fast and don’t know why.  Unfortunately, the problems you have in recognizing that you need help and asking for it, mean that you don’t schedule an appointment with your instructor to figure out why you’re flunking the class.  The term ends and you wind up with a big fat “F” on your records.

If you’re like many students with Asperger’s, you end up doing this again for a few more terms, then you flunk out of college.  You decide that you’re incapable of getting a college degree and leave school forever.  (It’s extremely common for people with mild autism to fail in college the first time they attempt going.  Some of them are able to go back and get a degree later in life when they’ve learned a few more life skills, but many never try again.  In some of my upcoming posts, I’ll address what we know about helping people with Asperger’s succeed in college.)

But let’s say that you’ve learned a little about self-advocacy.  You know your college has a program to help people with disabilities (the one at our local college is called DPS), and you know that you have rights.  (The Pacer Center website has a great discussion about the kinds of rights college students with disabilities have under ADA and the Rehabilitation Act.)  So you head off to the DPS in search of help.  Once there, you find out the following (paraphrased from Chaffey College DPS):

The student is responsible for providing current documentation of their disability to the college; planning his/her own education, identifying resources, and requesting reasonable accommodations; implementing their own academic plan and requesting services each time they are needed; meeting the unaltered fundamental college academic standards, standard course objectives, code of conduct, and program requirements; and providing their own personal services to assure their own independence and safety. The student is responsible to advocate for him/herself.

The DPS program can help you with things like on-campus transportation, physical access to classrooms, getting textbooks in an auditory format, taking tests in a quiet environment, tutoring, and education related counseling.  Your legal rights ensure that.  However, in order to access the help that your rights guarantee, you have to have enough self-awareness to know what help you need and you have to be able to ask for that help.  Your college professor is not going to track you down to make sure you understood today’s assignment.  He’s not going to ask if you have difficulties taking tests in noisy environments, or if you need written course notes.  As an adult student, it’s your responsibility to figure out what you need to pass his class.

Knowing your rights is an important part of self-advocacy, but it is in no way the only or most important skill our kids need to make it in the adult world.

So what do our kids need?  That’s what I’ve been asking myself and the other parents, educators, employers and agency workers I’ve been meeting with lately.  What do we teach our kids now so that when the time comes they can successfully transition into adult life?  So far, the answer is, we don’t really know.  For the most part, we’re still determining the best ways we can help our kids with Asperger’s grow into successful adults with Asperger’s.  But we have identified some of the difficulties our kids are facing, what’s causing them, and what skills our kids need to overcome them.  Here’s a list of some of the skills and characteristics young adults will need to develop in order to effectively self-advocate:

Characteristics/skills for successful self-advocacy: 

  • Self-awareness:  knowing their goals; what they like and don’t like; and their strengths and weaknesses compared to the typical population.
  • The ability to set goals, work toward them, and modify them as needed.
  • To know that they can learn how to do just about anything.
  • To know that life is a learning process.
  • Problem solving skills.
  • The ability to know when they need help, what kind of help they need, and how to get it.
  • A sense of self-responsibility – that their life is their responsibility, not anyone else’s.
  • Resiliency – how to survive life’s little (and not so little) set-backs.
  • Knowing what kinds of interpersonal relationships they’d like to have and how to build them.

This list is far from complete and it doesn’t go into detail.  My hope is that in the next couple of months I can dig a little deeper into the particular skills our kids need and talk about how we can teach them.  As I continue my research, I’ll post my findings here and update the list on my website.  I’d love to hear any suggestions and comments you have on the topic, because you (all of you) are the largest, most current source of information there is.  Your experiences are important, and I want to hear them.

Our children aren’t going to be children much longer.  As parents and educators our influence lessens over them a little bit more each day and so does our ability to direct their lives.  It’s the way life should be, and in the long run, it’s best for our kids.  That doesn’t mean it’s always an easy process or a short one.  But that’s okay.  Our children’s brains won’t solidify when they hit 18 years old, or 21, or 61.  They’ll still be learning and growing long after they leave childhood behind.  It may take them longer to learn the skills they need in adulthood than it takes neurotypical people, but that doesn’t mean they won’t get there.  And each little thing we teach them helps them get there faster.

– Cassie

PS. If you think this post might be helpful to someone else, pass it on.

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Leaving The Nest

The thing is, our children are getting older.  Many of them are no longer kids.  They’re young adults, ready to step out into the world.  They may or may not be leaving home yet, but they’re definitely wandering farther afield.  They’re graduating high school; starting college; looking for work; or learning to drive, take the city bus or ride their bike wherever they feel like going.  Some of them are dating.  They’re asserting their independence and letting mom and dad know that they’re old enough to make more of their own decisions.  Our sweet little babies are gone and in their places are sweet men and women who are beginning to face the world of adulthood.

They may or may not be ready.  We, as parents, definitely aren’t ready.  But like it or not, here we go.

I’m bringing this up because over the last few months, I’ve been pretty busy.  Not blogging (sorry!), but I’ve been talking to parents, K-12 educators, college educators, job developers, employers, adults with autism, government program administrators, service providers and other people who are trying to figure out how to help young adults with mild autism/Asperger’s successfully make the transition to adulthood.  Meetings like the ones I’m attending are happening all over the country – small meetings between a handful of agencies, large ones that determine statewide programs, and huge gatherings that draw people from across the nation, all working toward figuring out what we can teach our kids now that will help them succeed as adults later.

Do we know the answers yet?  No.  In some cases, we’re still trying to figure out the right questions to ask.  But we’re making progress.  We’re figuring out the reasons why college students with Asperger’s are more likely than neurotypical kids to flunk out of college their first time around.  We’re finding the most common reasons it takes our kids longer to learn the work skills that will keep them employed.  We’re identifying the potholes and challenges our kids face, and the characteristics and skills our kids will need to overcome them.

I’ve been gathering information so that I can recommend what Open Doors Now (the non-profit I run) should do to help our local young adults succeed in college and the workplace.  I am also the mother of a 17 year old son who has mild autism, is 6’2”, is getting ready to graduate high school, and is currently ineligible to receive any sort of state assistance.  Is part of the reason I’m pursuing this topic because of a mild (okay – moderate) sense of panic?  That could be true.  But that’s okay.  If autism research is like a mill, slowly but continually producing more and more knowledge about how to help our kids, panicked parents are one of the biggest forces that power that mill.

My third goal (after helping my son and our local Aspie population) is to pass on what I’m learning to you – the parents, educators and Aspies themselves who are looking for solutions now to help yourself or people you care about.  My posts over the next few weeks will be concentrating on the issues of transitioning to life after high school, but they won’t just be written for teachers and parents of teens.  Educators and parents of younger children, this stuff is for you, too.  Many of the skills our kids need to learn to make it as adults are ones we need to be teaching from pre-school age through high school; at home, at school and in the community.  Many of the attitudes our kids will need to have are ones you need to be modeling now.  Adults on the spectrum (and parents of adults on the spectrum), you can benefit from this information as well.  It’s never too late for any of us to do a little self-improvement, and if our efforts make our lives a little easier in the process, all the better.

In addition to posting on my blog, I’ve started sharing helpful links to what other people are coming up with on my Facebook page, ODN’s Facebook page, and my Pinterest account (Autism & Education, and Autism — Adults.)  Feel free to check them out.

One of the best things I’ve learned in all these meetings I’ve been attending is that my family is not facing this alone.  Yours isn’t either.  There are a lot of people, all over the world, who are working to help our kids learn to lead successful adult lives.  Together we are going to come up with solutions.

– Cassie

PS. If you think this post is helpful, pass it on to someone else.

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