October Is Rough

October is often a rough time for our kids.  The honeymoon time from the beginning of the school year is over.  The teachers are calling you about difficulties your child is having in class or with the results of assessment tests.  Kids are tired of keeping it together in the classroom.  Everyone expects that our kids must have the classroom routine down by now, but maybe they don’t. 

I just want you to know that if your child is hitting a rough patch right now, you’re not alone.  A lot of our kids do.  Hang in there, work with the teachers, get more info, cry a bit, don’t argue with your spouse because it won’t help instead go out on a date with him/her, give your kid a lot of hugs, cut yourself some slack, and quit worrying about the fact that the holidays are just around the corner.  Relax.  Breathe.  Do something fun.

By Christmas your kid will have settled down in class.  (He’ll have to readjust after vacation, but that’s normal, too.)  Sometimes we just have to live through October.

 

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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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Transitions Are Not Fun

Transitions are not easy for kids on the autism spectrum, and they’re not a lot of fun for us parents either.

Going back to school after summer break can be really tough.  Not only do kids have to get into the routine of getting up early in the morning, sitting through innumerable lectures on things they don’t care about, and doing brain numbing amounts homework, they’ve got to deal with all the changes, too.  New teachers, classrooms, schedules and classmates, and maybe switching schools.  Or perhaps your child is no longer a child – he or she’s a young adult.  He may be starting college or looking for work.  He’s got a whole new role in life and a bunch of challenges that come with it: his first job, riding the city bus alone or driving a car, or maybe even moving out of home.  Stepping into a new stage of life is hard on our kids, and for parents it’s a scary, scary time.

The weeks leading up to a transition are generally all about getting ready.  We go over everything we can think of with our kid.  “Do you know where to go the first day?”  “Do you have everything you need?”  “What are you going to do when you get there?”  “What will you do if you need help?”  You might physically walk her through things a few times, help her find her classrooms or spend a day traveling back and forth to work until you’re sure she can do it on her own.  You might introduce her to her teachers, and tell her who to talk to and who to ignore.  There will be new skills to learn, like opening the lock on her P.E. locker and using the cafeteria, and perceptions to change.  “Kids your age don’t play tag at school anymore.  If you chase them, they’ll think you’re weird.”   “Yes, it’s okay that other kids swear in high school.  It’s up to the teacher to correct them, not you.”  “No, you can’t wear that outfit to work, even if it’s casual Friday.” 

Dealing with the anxiety is big, too.  For weeks or even months before the transition, we repeat the same things to our kids, over and over.  “You’ll do fine.  This won’t be that different from things you’ve done before.  You can do this.  It won’t be that bad.  You’ll figure this out.  I’ll help you.”  We talk to our children, calmly and with confidence, trying to mask the fact that inside we’re freaking out more than they are.  “What if he gets hurt?  What if he gets lost?  What if he does something terrible or someone does something terrible to him?”  The worst possible scenarios run through our minds, over and over, and we squelch them the best we can.

We talk to our children about emotion control – what to do if they get angry, anxious or frustrated.  We go over the options they have for calming down and their responsibilities to other people, that it’s not okay to yell at them or throw things or be mean.  And we go over the consequences for misbehavior yet again.  “People won’t like you.”   “They won’t want to help you.”  “You’ll scare them.”  “You’ll get sent to the principal (or get fired, or get sent to jail.)”  We don’t want to make our children afraid, but they have to know what the world will do if they misstep.  Whether it’s fair or not is irrelevant.  Our hearts break as we try to shove enough survival skills down them that they’ll be safe. 

Then the big day comes.  We push our children out the door (or let go of their hand so they can run forward.)  We drop them off in whatever new situation it’s time for them to face.  Then we find something else to do, something to keep us busy and distract us as the hours crawl by.  Like poking at a sore tooth, our minds keep conjuring worst case scenarios.  We use our own calming techniques to quit worrying, at least for a little while.  “She’ll be fine.  She’s a big girl and she can do this. The worst that will happen is I have to go pick her up.  Then we can figure it out and try again.  It will be fine.”

Finally, the first day comes to an end.  We collect our children and ask the question we’re almost afraid to ask.  “How did it go?”

Chances are that it went fine.  Everyone survived and nothing terrible happened.  There were some bumps, but overall it went okay.  The difficulties that came up can be fixed or worked around.  A little more education here, a few more skills learned there, and we’re good to go again tomorrow.  Maybe we need to pull back a little; maybe we were expecting a bit too much.  Or maybe our child just sailed through the day and we’re sorry we didn’t push him harder sooner.  But whatever happened, we made it.  We lived through today and tomorrow doesn’t look quite so bad. 

Or maybe it does.  Maybe today was a terrible day.  You’re holding your child and attempting to pick up the pieces and put her back together so she can face tomorrow.  You’re trying to figure out how you can change her environment enough to make it work, or who you can talk to that can help, something you can say or do to smooth her life out again. 

Sometimes transitions go smoothly, and sometimes they don’t.  Sometimes our kids pass through them so easily that we wonder what we were afraid of in the first place.  Other times the road forward is pretty rough, full of bone jarring potholes, wrong turns and tears.  When we hit times like that it’s tempting to turn around and go back, but the thing with most of the transitions in our kids’ lives is, we can’t go back.  We have to move forward.  Our kids can’t be twenty-seven years old and still attending elementary school.  Change happens whether we want it to or not.  The secret to navigating it is to know that whatever happens, you and your child will get through it.

You will, you know.  If things are terrible, you’ll find a way to change them.  If you’re child isn’t ready for the challenges he’s facing, you’ll ease him into them.  You’ll build his skills, he’ll mature, you’ll help change his environment and he’ll learn to deal with life.  It might take a month or two, or three or more, but however long it takes, you won’t quit until his life is better.  You will succeed, and so will he.

Transitions are hard.  But without them, our kids would be stuck in a never-changing world.  They wouldn’t grow.  They wouldn’t need to develop new skills, so they wouldn’t.  New opportunities would never come their way.  They’d never learn to solve problems and they’d never have the self-confidence to try.  Transitions are a part of growing up; they mature our kids and make them more capable.  They’re a necessary part of life, even if sometimes they’re really tough to get through. 

Transitions are good, even if they are scary.

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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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The Mommy Wall

There are times in our lives when we can be sitting in a crowd of people and feel very alone.  The Mommy Wall outside our local elementary school is one of those places.

The Mommy Wall is a low brick wall that forms part of a planter that runs along the front of the school.  Its top is wide enough to accommodate adult-sized backsides and it’s just high enough to make it a perfect place to sit.  One end of the wall is in the shade and protected from rain, and the other is in the sun, so no matter what the weather, you can find somewhere that suits you.  The best part of the Mommy Wall though, is that from there you can see the gate where the kids are released after school.  When the final bell rings, you’re in a prime position to pick out your child from the sea of swirling, whirling kids, backpacks and homework. 

For that reason alone, the Mommy Wall is a popular place to sit.  Moms and Grandmas (and the occasional Dads and Grandpas) congregate there in droves, chatting away while waiting for the stampede.  They talk about Little League and sleepovers, dance lessons and scouting, and who said what to whom and what they should have said instead.  Thrown together by the demands of their children’s activities, people who may not have otherwise had reason to interact with one another are now friends.  They listen to each other brag about their children’s accomplishments, commiserate about homework, and offer advice about dealing with the ups and downs parenting.  They celebrate their children’s successes, validate one another’s experiences, and in a hundred little ways tell each other that although parenting isn’t easy, they’re doing as well as everyone else is.  They are not alone.  The Mommy Wall is a ten minute support group that meets every day.

For some parents, though, that’s not why they sit at the Mommy Wall.  They sit there because not only does it give them a good view of the kids coming out of the gate, it’s someplace they can sit where their child’s teacher can find them.  It’s not prearranged meeting – they don’t know that their child’s teacher will necessarily be looking for them.  It’s just that sometimes she is.  Once a week, or twice a week, or sometimes more often than that.  Depending on what’s going on in the child’s life, the teacher may feel the need to touch base with mom frequently.  Typically those aren’t fun times.

If the teacher is looking for mom, there’s a reason.  It might just be about class work that didn’t get finished or something the child needs to remember to bring in to school.  It might be to let mom know about something particularly good the child did that day.  But typically it’s to let mom know there’s a problem.  Junior did something that he shouldn’t have.  Or Junior didn’t do something that he should have.  Or, which is often the case with kids with autism, Junior did something that no one else ever thought to do before and that no one ever thought to tell him that he shouldn’t do (like while stepping out of class to go to the office, taking a side trip to the cafeteria to see what’s in the refrigerator.  That way he could get evidence to support his case to the principal that she should fire the lunch lady and hire somebody who cooks something he likes.)  Two out of three times, if teacher is looking for mom, it’s because something bad happened.

Those moms (and dads) who are sitting on the Mommy Wall in case the teacher wants to find them, are generally not happy.  They are not chatting away with the other parents.  They may not even know the other parents.  Junior may not be able to participate in after school activities and so they may never have met them.  Homework may take too much of his time, he may have therapy/doctor appointments, he may not have the skills to participate, he may have social difficulties that make it hard for him to get along with others, or the stress of getting through the school day may already be all the family can handle.  If Junior doesn’t play baseball, mom and dad won’t meet other parents through baseball.  If Junior doesn’t do Scouts, mom and dad won’t know the Scouting parents.  If their child doesn’t have friends who invite him over after school, mom and dad won’t meet other parents that way.  And if their child has difficulties, mom and dad may not have the time or energy to participate in the PTA or school booster groups or community activities like church.  If parents are sitting on the Mommy Wall so the teacher can find them, there’s a good chance they’re sitting alone in a crowd of people.

These parents don’t get the benefit of the daily support group; in fact, it often makes them feel more alone.  They overhear the conversations of other parents and it underlines how different their family’s life is from everyone’s around them.  They get to hear about soccer games and sporting events that their child can’t participate in.  They hear about social events their child wasn’t invited to.  They listen to parents talk about accomplishments that their child hasn’t and may never achieve.  If their child is struggling, they probably aren’t hearing other parents talking about what they’re going through.  Parents don’t tend to chat about how their child hit another kid, or about him having a major temper tantrum in the library, or swearing at the principal, or having a toileting difficulty, or being three years behind in reading.  Junior’s accomplishments aren’t something other parents would even necessarily celebrate.  Going a week without ending up in the counselor’s office is not a milestone most parents can relate to.  It’s not that they would look down on a family going through that, it’s just that their experiences are so very different that they wouldn’t really understand.  The parents who need a support group the most are the ones who aren’t getting it.

Parents who sit on the Mommy Wall so the teacher can find them, often think they are the only ones there for that reason.  They don’t see that in that crowd of folks who all seem to know each other, there are a handful of people who are waiting, too.  Different parents, waiting for different children and different teachers.  Different families with different challenges, but with more in common than they know.  All of them mustering the courage to wait for the report on how their child did.  All of them doing the best they can to get their family from today to tomorrow.  All of them worried about what their child’s future will bring and how they will handle it.  If they knew there were other parents there like them, they could find the support they need.  But they don’t.

If you’re reading this, chances are you’ve sat on the Mommy Wall yourself.  It may not have been an actual wall – your school might have had benches or a shady spot under a tree or maybe you just waited by the school’s front door.  But you know what I’m talking about.  You’ve sat there, stressed out and feeling alone.  You’ve watched other families buzzing about their busy, normal lives.  You may not be sitting on the wall now, but you remember what it was like.

So here’s your assignment.  Go find someone who’s currently sitting on the wall and introduce yourself.  Chat them up.  Ask them how their day is.  Find out who their kid is and how he’s doing.  You don’t have to be scary-stalker-like.  Just have a conversation.  Share a little about your family.  If they find out your child has a few difficulties, they may feel comfortable talking about their child.  Or maybe not.  But at least they’ll know they aren’t alone.  And next week, when you see them sitting there, say hi again, and do it the next time you see them, too.  You don’t have to be their best friend; just be friendly.

You may not think that a smile and a wave can have that much affect on someone who’s sitting on the wall, or that a few moments of commiseration can really help someone make it through their day.  But I want you to think back to the times when your child was having a really hard time.  Remember how you felt?  The panic?  The fear?  Wouldn’t it have been nice if someone who understood what you were going through, who had been there and survived it, had taken a few minutes to sit down and chat?  If someone had helped celebrate your child’s accomplishments, commiserated about his difficulties, and offered advice about dealing with the ups and downs of parenting?  If they had validated your experiences and told you were doing as well as anyone else in your situation could?  If you had known you weren’t alone? 

All of us sitting on the Mommy Wall need a friend.  If we don’t reach out to one another, it won’t happen.  We’ll all just continue to sit, side by side, alone.

– Cassie

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Resource: Teaching Independence

Here are a few blog posts that talk about teaching our kids independence.  I like how the author talks about constructively prompting our kids in a way that promotes independence.

http://blogs.psychcentral.com/autism-aspergers/2010/11/teaching-vs-doing/
http://blogs.psychcentral.com/autism-aspergers/2010/11/asking-vs-telling-a-strategy-for-thinking-independence/

– Cassie

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Crippling Our Kids With Kindness

Personally, I’d love to blame all my kid’s difficulties on autism.

Wouldn’t that be convenient?  If no matter what my child did, I could say that it wasn’t his fault and it wasn’t my fault – it was because he has autism? “Aww, I’m sorry my son spit on you, Mrs. Teacher.  But he has autism, and autistic kids do that sometimes, especially if something triggers them.”  Then she’s say, “Oh, that’s okay.  He’s a sweet kid and I’m sure he didn’t mean to spit on me.  It just happened.”  I could nod my head and give her a tissue to clean up the spittle, then as any good, supportive mother would do, offer to help her take a look at her classroom and the way she runs it, so we could figure out what she did that made my kid spit on her.  Then we could make sure she didn’t do it again.  My son would be a good kid, and everyone would be happy.  Wouldn’t that be nice?

You may think I’m exaggerating, but I’m really not – well, not by much.

First, let me say that I don’t have any experience with kids who are severely affected by autism.  I have no idea what they can and can’t do, so in this article I’m not talking about them or their parents.  I don’t have the knowledge to offer a legitimate opinion on how to help them or their families. 

In this article, I’m talking about kids who are mildly or moderately autistic, Asperger’s, high functioning, PDD-NOS or similar.  I’ve worked with hundreds of these kids, their families and educators, and trust me when I say that in doing so I’ve seen a troubling trend. 

Some of us are crippling our children.

We’re doing it out of kindness and the goodness of our hearts, but we’re crippling them nonetheless.  We’re teaching them that autism has made them incapable of controlling themselves.

We don’t say that in so many words.  Instead we tell people, “Oh, I’m sorry that happened.  But you know, he has autism,” and we leave it at that.  Like autism is a get-out-of-jail-free card.  That if we wave it around enough, society will excuse our child’s behavior.  Not only is that delusional on our part (because society won’t, especially when our kids have grown out of the cute, little tyke stage and into the six-feet-tall and hairy stage), but it’s also damaging to our children. 

When we use autism as an excuse for our child’s behavior, we’re telling our kids that not only do they have no responsibility for their actions, they’ve got no control over their actions either.   We’re saying that autism is bigger than they are – that it runs their life.  We’re making them slaves to their autism.  We’re training them to believe that no matter what they do, they can’t change their life to make it better or improve themselves.  We are instilling a self-defeatist attitude that they may never get over. 

Imagine the following, that one of our now grown autistic sons gets a job.  He likes his job.  His co-workers know he’s a little odd, but he’s a good worker so they accept him.  Then one day something happens and he loses his cool.  Major meltdown.  Throwing things and yelling at people.  Eventually he calms down.  He apologizes and says he has autism.  His boss has sympathy for him, but can’t afford to have an employee who may injure his other employees.  Our boy gets fired. 

So, what does our young man do next?  If he believes that he has no control over his autism, he may go find another job, but sooner or later a meltdown will get him fired from that job, too.  And the one after that, and the next one.  Eventually he’ll get fired often enough that he’ll decide that due to his autism, he is unemployable.  He may rant that people don’t understand what it’s like to have autism, or that employers are unfair, or he may believe that he is defective.  Wherever he lays the blame, the important part is that he will quit trying.  He’ll file for state assistance and live in poverty for the rest of his life. 

(I am not making this up.  Go lurk on message boards for folks with autism and read it for yourself.  And while you’re at it, look up how much disability pays – it’s not much.)

Let’s look at another instance.  What if instead, our young man was taught from his early years on, that he is responsible for his actions, whether or not he has autism?  What if he was taught to recognize his areas of strength and weakness, and that through hard work he could either overcome his difficulties or find a way to work around them?  If he had the underlying belief that although autism made his life difficult, he had the means to make his life better?  How would this young man react to being fired from his job?

Hopefully he’d try to figure out why he had the meltdown in the first place.  Maybe that job was a bad fit for him – too noisy, too much social interaction required, too fast-paced or whatever.  Maybe he needs to go talk to someone about learning to control his temper or anxiety better.  Maybe in the future he needs to self-disclose more and perhaps ask his boss for supports.  If our young man has the attitude that he has control over his life in spite of autism, he will eventually be able to find a job where he excels.  It may not be his first job or his tenth job, but he will keep trying until he finds a way to succeed.  His life may not be easy, but he won’t end up sitting at home, cursing humanity, or believing that he’s a broken individual.

So how do we teach our children this attitude, this belief that they can succeed? 

We hold them responsible for their actions.  We help them learn about their strengths and difficulties.  We teach them that they have control over themselves; that even though it may be very hard for them to control themselves, they are capable of learning how to do it.  We teach them to ask for help when they need it and where to go to find it.  We help them learn from their mistakes and celebrate their successes.  And we instill in them that they are smart and capable, that we will help them learn what they need to know, and that we won’t give up on them, no matter what. 

And if they spit on people, they get in trouble.  Even if they have autism.

I am not delusional.  I know that autism can’t be wished away by the power of positive thinking.  No matter how hard we and our children work, there will always be some aspects of autism they struggle with.  To teach our kids that autism is something “they can get over if they try hard enough” would be setting them up for a lifetime of feeling defective – of never being good enough.  Autism causes real problems in their lives.  To ignore those problems damages our kids.  But teaching our kids that because of autism they can’t control any of their problems, damages them as well.

– Cassie

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Marshmallows and Ducks’ Feet

 I’m sorry I’m so late getting this blog post out.  No, wait – actually I’m not sorry.  Not one bit!

I’m actually delighted that I’m late, because I had a great time ditching you all.  Instead of rushing to get the kids off to school yesterday and then spending my morning struggling to think of something profound to say about autism, I was camping on the coast with my family.  At sunrise I was strolling along the beach, arm in arm with my hubby, watching the early morning light tint the waves pink and having fun trying to decipher the stories behind the different footprints we found in the sand.  There were a few virtuous souls out there, jogging their way to health.  We watched them for a while, then followed our noses into town to a bakery famous for its ooey, gooey cinnamon rolls.  (They lived up to their reputation!)  No, I have to say that I didn’t miss you guys at all.

Perhaps I should have felt guilty that I was stepping out of the autism world for a little while.  Actually it wasn’t the autism world, per se, but more the world of responsibilities.  Instead of doing homework this weekend, my kids were eating toasted marshmallows.  (They didn’t eat them so much as ‘accidently’ light them on fire and watch them foam, bubble and char.  Yeah, it wastes food – but you have to admit, those flaming balls of destruction look pretty awesome.)  They went hiking through a grove of eucalyptus to search the canopy for the first arrivals of the monarch butterfly migration.  They stared up at the clusters of fluttering orange wings for a few minutes, then while my daughter sketched, the boys wandered off to ogle a duck’s foot they’d found on the path.  (No duck, just a dried up old foot. Some things are more interesting than butterflies, I guess.)  They rode bicycles and argued and slept late in sleeping bags and ate grilled pizza that was only slightly burned.  It was a trip we couldn’t have taken when they were little because autism would have made it too hard, but we could take it now and we did. 

Maybe I should have felt guilty that I’d pulled them out of speech therapy and geometry and English papers and the never-ending waterfall of homework.  Five years ago I wouldn’t have dreamed of missing a school day to take an extra-long weekend.  School is too important.  My kids’ futures are too important.  But now I realize that every once in a while (and I mean super-duper-rarely-only-once-or-twice-a-year), a little family vacation is pretty important too. 

My kids aren’t getting any younger.  We’re already passed the days when the swings at the park are a big thrill or watching trains go by or wading in the waves.  We’re already to “Isn’t that guy at the snack bar cute?” and “Can we have some money to go into town?” and “Do I really have to turn off my iPod?”  (Although apparently dead duck bits are still fascinating.)  My family is getting older, and if my husband and I blink we’re going to miss it. 

So, no, I don’t feel bad about taking a weekend to step out of the world and enjoy my family.  Geometry can be made up, sunny fall weekends at the beach can’t.  Neither can whatever it is that you and your family like to do.  It may be camping, or bicycling, or watching a movie together or going out for pizza.  Whatever it is, do yourself and your family a favor – take a little time out of your routine to spend some time together.  Make it a mini-vacation, even if it’s just for a few hours.  Leave autism at home as much as you can.   Your child will still have autism, but for a little while don’t let it be the focus of your relationship with him or the focus of your family.  Let it be butterflies or marshmallows or dead ducks.  Take a little time to remember why you had kids in the first place.

And take a little tip from Aunt Cassie.  Don’t waste your time trying to get your kids to ignore whatever disgusting dead thing they find on the trail in favor of the educational exhibit you took them to see.  Instead, let them enjoy their vacation.  And while their attention is focused someplace else, take the opportunity to sneak a smooch with your sweetie.  Remember, it’s your guys’ vacation, too.

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Big Hairy Man Feet

All of a sudden, my son grew big hairy man feet.  He’s got big hairy legs, too, and whiskers on his chin, and hands the size of dinner plates, and a certain eau de manly-man-stink if he misses a shower.  And I just want to know – when did this happen?

It seems like just last month he was an adorable blond toddler, with soft duck-fuzz hair, beautiful blue eyes, and a curiosity that demolished furniture, plumbing, all breakables left within reach, and a few of our friendships.  He gave hugs that melted your heart, then as soon as your back was turned, he’d take apart the toilet to see how it worked or climb to the top of the bookcase to see what was up there.  I couldn’t keep ahead of him.  We were lucky to survive, what with him running through parking lots and his fascination with swimming pools.  But he was so sweet.  Was it really that long ago?

Wasn’t it a few weeks ago he was a three feet tall, holy-terror-tornado, rampaging his way through pre-school and kindergarten?  He was bounced from two preschools before we found special education.  It was a life-saver.  They welcomed my little ball of fire with open arms and helped him learn to slow down – a bit.  He still screamed if it was noisy, and he couldn’t make it through circle time without falling apart, but he learned to write his name and say his numbers and read.  And his hugs were just as sweet.

The primary grades were challenging.  There were tantrums, yelling and tears, and an awful lot of homework – hours of homework.  We had parent-teacher conferences weekly and sometimes daily.  We struggled.  The teachers tried so hard and so did we.  But there were precious times, too – ones I’ll never forget.  Halloween parties – hordes of little goblins running through the dark with glow-sticks and flashlights.  Cutting out mounds of paper snowflakes together and leaving drifts of white triangles all over the floor.  Smearing gobs of frosting on graham crackers, raining down candy and declaring it a gingerbread house.  Throwing Easter eggs into dye cups to see how high you can splash.  Watching fireworks at Legoland, then sleeping all the way home.  They were hard years, but some days I miss them.         

I’m not sure how we made it through upper elementary school.  We had less tears but more yelling.  Pre-algebra wasn’t easy, especially when he was convinced the text-book authors were idiots.  There were medication changes, and more medication changes, and yet more changes.  Essays were hard to write, assignments got lost, books weren’t brought home from school.  His classmates were still very kind, but party invitations quit coming.  At recess the boys and girls stood around in groups and talked, while he still wanted to play in the sandbox.  But he liked school, and he used to smile and wave when I dropped him off.  When I picked him up to take him home, he’d run into my arms and squeeze me tight, big enough and tall enough that I’d have to tell him not to squash me.

By junior high, things were changing.  He’d been out of special ed for years and was now in honors classes.  The work itself wasn’t the hard part – it was sitting still in class and not blurting out the answers, and not telling the teacher she was doing it wrong.  Changes to assignments drove him through the roof and suddenly girl classmates seemed very different than before.  But homework was easier and he could do it himself.  I got fewer telephone calls from the school and while I was glad he was doing well, suddenly I knew I was starting to lose my window into his life.  I began making sure I got my hug each night when he went to bed because I knew then that hugging time doesn’t last forever. 

He’s been in high school a few years now.  Grades come easy to him and homework always gets turned in – I never even see it.  His teachers stop me when they see me, to say that though he still has some rough spots, he’s really doing great.  He’s got a few friends who call him to come over – for Halloween parties and camping and to hang out in the swimming pool.  I drive him over and drop him off, then go on my way, no longer having to hover just to keep him alive. 

When I look back at where we came from, I am amazed.  To tell you the truth, there were times I didn’t know if we’d make it.  It wasn’t easy – those hours spent at the homework table, pouring out more patience than I knew I had, trying to come up with one more way to explain whatever my son was struggling to understand.  Those times at school when I had a sobbing child in my arms and a teacher nicely requesting an immediate conference.  And yet those aren’t what comes first to my mind when I remember those years.  It’s my son sitting in my lap, handing me “Green Eggs and Ham” to read for the tenth time that day.  And house paint dripping from his fingers after he’d gone into the bucket up to his elbows.  And the sweet little face filled with curiosity when my boy brought his latest treasure to share with me.

I look at the great, hairy, soon-to-be-a-man in my house and I can’t even tell you how he got here.  He’s more capable than I ever thought he’d be.  From where we are now I can see a future where he’s more secure and happy than I ever imagined.  From holy little terror, to a mellow young man – how did it happen? 

I don’t know.  But I feel blessed to have been here while it did.

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All Aboard the Roller Coaster Express!

I sat at the table in my pajamas, a warm cup of tea in my hand, watching my son through the window as he headed off to the school bus stop.  When he reached the corner he pulled his eyes away from the book he was reading long enough to check for cars before crossing, then he walked on in the early morning sunshine, oblivious to the fact that at fifteen years old he has a mother who still occasionally spies on him.

I was happy.  We were only a few weeks into the school year and things were going really well.  After school each day my son would come home relaxed and cheerful.  He’d inhale an impossibly large amount of food, then start his homework.  I’d check his daily organizer and find it neatly filled out.  The school’s parent-snooper website showed his work was all turned in and his test scores were high.  I’d ask him about what he did at lunch time and he could tell me the name of a friend he’d talked to.  For parents of typical kids maybe times like this were common, but for a parent of an Asperger’s child, this peaceful, productive, happy calm was the product of many years of struggle and tears.

I thought back to when he was little – first grade, blond hair, chubby little cheeks and amazing blue eyes.  He was a beautiful child, but not an easy one.  Every day I’d wait by the school’s gate to retrieve him from his teacher, making sure to catch him as he came out so he wouldn’t keep running and end up in the busy parking lot.  I knew there was an even chance I’d have to spend a few minutes chatting with his teacher, or if the day had been particularly interesting, longer than that.  I’d wipe any tears of his that needed wiping, then hand him the bag of snacks I’d brought just for that reason – something to get him to sit down, calm down and stay occupied while the teacher and I talked about things like the best ways to teach him that he had to stay on campus during the school day even if he could figure out how to escape.  Or how to complete an art project without throwing a screaming fit out of frustration, or to come back in from recess by himself without someone having to go hunt him down and retrieve him, or how to deal with whatever other difficulty they’d run across that day.  Then my boy and I would drive off for home where we’d spend three to four hours at the homework table.  It was three to four hours of “Because the teacher gets to make the rules and you have to follow them, whether you like them or not,” and “Calm down, I’ll help you learn this.  Let’s try it again,” and “You write down one answer, then tell me the next one and I’ll write it down for you.”  It was equal parts negotiation, creative teaching, bribery and tough love.  He wasn’t an easy child and it wasn’t an easy year, but we got through it.

And we got through each of the school years that came after it.  They each had their own set of challenges and none of them were easy.  But now that I thought about it, I realized each of them had been a little easier than the one before.  He had learned to read and then he could do it on his own.  He discovered that the way to get other kids to play with him wasn’t to grab them by the arm and drag them to the sandbox.  He learned how to write a sentence, then a paragraph, then an essay.  He figured out that math was something he could learn if he calmed down, tried again and asked for help when he needed it.  My impromptu parent-teacher conferences dropped from every day to a few times a week to once every few weeks.  And the phone calls from school that had given me so many years of stomach aches finally had blessedly stopped.  

I was happy as I watched my now six foot tall son round the corner to the bus stop.  We’d had our challenges, but he could do more now that I’d ever thought would be possible.  He was making it.  He was still socially interesting, but he was competent, calm and independent.  He was going to be okay.

Just before noon the phone rang.  “Mrs. Zupke, I’m your son’s school counselor.  Do you have a moment?” 

My heart sank.  There were a lot of different reasons why the counselor might call me, but from the tone of his voice I didn’t think this chat was going to be about missing paperwork or class schedule changes.  I was right.  Things weren’t going well at school. 

The happy, cheerful teenager who came home every afternoon and told me his day at school had been “fine”, apparently had a vastly different definition of the word “fine” than the school did.  Things weren’t fine and his teachers were losing patience.  They knew he had autism and they were doing a great job of working with him, but his behavior was getting out of hand.  It was impacting his classmates’ ability to learn and his teachers’ ability to teach.  Things weren’t horrible, but they needed to be addressed.

As much as I’d liked to have argued that my son’s disability was the cause of his poor behavior and that my sweet boy shouldn’t be blamed, I couldn’t.  For one, I knew he was capable of better behavior – we’d been through all this last year.  But also I knew that in a few short years he’d graduate from high school and go out into the real world.  Though the school could tolerate his behavior now, society wouldn’t later.  Behavior that leads our Asperger’s kids to the principal’s office while they’re still in school can lead them to the courthouse when they’re adults.  While I wanted to downplay what the school’s counselor had told me, I knew that to help my son most we needed to deal with his behavior now. 

It wouldn’t be fair for me to tell you exactly what my son had been doing that got him into so much trouble.  It’s bad enough that his mother spies on him, he doesn’t need me to broadcast all his difficulties and mistakes to the world.  I will say that it wasn’t something that would have gotten him arrested.  In fact, on the school’s scale of one to ten it probably ranked around a four, especially for a special needs kid.  Not horrible behavior, but something a parent needed to know.  But on my stomach ache scale it ranked a solid 8.5.  Not because what he had done was so bad, but because up until then I’d thought he’d been doing so well.

In that half hour I’d spent on the phone with the counselor, my stress level had been reset – maybe not all the way back to where it was in first grade, but it was pretty high.  I mean, yeah, the beginning of last school year had been rocky, but my son had gotten his act together.  By Christmas things had settled down a lot and he’d been doing really well.  Now he was doing the same things he’d gotten in trouble for last fall.  I’d thought we were through with all that.  I thought he’d learned those lessons already, but apparently he hadn’t. 

As I tried to figure out what was going on in my son’s head, to understand why he thought it was okay to act this way now, I started thinking of other challenges we’d overcome.  Maybe we hadn’t really solved those problems, either.  Perhaps we’d just put them to bed for a while, circumstances had changed and those problems hadn’t come up again.  Yet.  Was I really judging his abilities accurately?  I mean, I let him walk to the bus stop himself this year.  Many times I’d seen him quit reading his book long enough to safely cross the street – enough times that I thought he’d gotten that skill down cold.  But what if I was wrong?  What if watching for cars was something he only remembered to do most of the time?  95% of the time is pretty good odds unless you’re talking about dodging cars. 

In the next couple of hours I’d come up with at least ten different ways he could get himself hurt or in trouble if the lessons I’d thought he’d already learned hadn’t stuck.  When he was little we’d spent a lot of time talking about why it wasn’t okay to touch girls’ hair even if it was really pretty.  It had been years since that problem had come up but now he was in high school where touching girls took on all new meanings, especially if they felt threatened.  And while saying the wrong thing to a kid in the bathroom in elementary school was bad, it wasn’t nearly as dangerous as saying it to a high school football player.  Besides, we’d worked so hard.  Hadn’t we made any progress?

By the time my son got home I was pretty unhappy.  I kept calm as I talked to him about his actions at school; I was firm when I explained the behavior expected of him and why it was expected; fair in specifying the consequences of his actions; and encouraging when he realized the impact his behavior had on the people at school and what they might think of him now.  I kept it together on the outside and did what I needed to do, but inside I was a scared mommy who knew she was failing her child and was running out of time before her failures caused him serious consequences.  I wasn’t teaching him fast enough or well enough.  We weren’t getting anywhere and the time I had left before he was in the real world was getting shorter and shorter.

Was I overreacting?  In retrospect, yes.  The beginning of the school year always throws him for a loop.  I should have known that he’d hit a few bumps in the first weeks.  He always does and we’ve always managed to work them out.  And it’s not like I’m new to parenting special needs kids.  I know it’s an emotional roller coaster ride.  During good times we parents feel great – like our kids are really making progress and that eventually they’ll do just fine.  Then we hit another roadblock and it feels like the rug has been pulled out from under us.  We fall right back into being scared and worried.  We never know if we’ll be able to help our children overcome the latest difficulty.  We worry that we’ve hit their limits for learning or that we’ve run out of therapy or medicinal options.  Just because we’ve made it through the previous challenges doesn’t mean we’ll be able to make it through this one. 

All my emotions had been very human.  They’re something we all feel, no matter how long we’ve been doing this job.  But you know what I discovered?  Even though unexpected difficulties still throw me for a loop, I’m getting better at dealing with them.  Sure I panicked.  But it was a controlled panic.  I was able to do what I needed to do.  I got the information I needed, helped my son see the error of his ways, gave him more ideas for coping with difficulties and put a reward/discipline program in place.  Even though emotionally I was still acting the way I had ten years earlier, now I had more tools to help me move forward.

So how did it turn out for my son?  I got in contact with each of his teachers and discussed his behavior.  Yes, he had been misbehaving, however not to the degree he had in years past.  His ability to manage his emotions, calm himself and get back on task have improved.  He’s learning how to manage his behavior and slowly, very slowly getting better at it.  We still have a long way to go, but if he keeps maturing I can envision a future for him that includes getting through college and later holding a job.  Despite his setbacks, my son really is making progress.  And you know what?  I think am, too.

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