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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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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Tips for Parents on Surviving Your Next Parent/Teacher Conference

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

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

Our kids may have autism, but they’re not aliens.  They’re human.  They feel all the same emotions, follow roughly the same developmental path, and try all the same ways to influence their parents as other kids do.  And like typical kids, they can be pretty vocal when expressing their feelings.

“I hate you!”
 “You don’t love me!”
“I’ll run away from home!”
“Then I won’t eat anything!”
“You don’t understand me!”
 “Nobody likes me.”
“You’re ruining my life!”
“I’m never coming out of my room again!”

As parents of kids with autism, we really monitor our kids’ lives.  If they have a bad day at school, we want to know why.  If someone says something mean, we want to know if there’s full scale bullying go on.  If their grades dip, we’re ready to call an IEP meeting.  Because of the level of severity of our kids’ challenges, we have to be hyper-aware and very proactive.  Our kids need us to.  But sometimes this extra-vigilant attitude can get us into trouble, too.

We’re always looking for reasons for our kids’ behavior, and sometimes we don’t look to our kid first.  We want to know who or what triggered that behavior in our child.  So when our kid says the same rotten, hurtful things that all kids his/her age do – a lot of times we blame ourselves.  “If he says he hates me, I must be doing something wrong.  I’m not showing my love in a way that my autistic child can see it.”  “If she says she won’t eat unless I turn the TV on, I’d better turn the TV on because she’s really obsessing about this.”  We assign their behavior to their autism and therefore feel like terrible parents if we’re not giving our children enough support that they don’t flip out and say hurtful things.  Or worse, we change what we expect from them.  We stop asking them to do whatever it was that triggered the outburst, even if what we were doing was good for them.

That’s when we have to take a step back and ask ourselves the age old question – “Autism or brat?”  Is our child’s behavior due to his autism or is it the same brat behavior that all kids go through once in a while?  Is what our child saying a red flag or is it something we just need to live through?  How seriously do we take it?

My point isn’t that our kids are saying hurtful things in order to manipulate us.  Sure, they might be – they’re not dumb; they can learn to manipulate their parents like any other kid.  But more than likely, they really do believe what they’re saying at the time they’re saying it.  They feel like no one likes them, or that you don’t love them, or they may really hate you right then.  I’m not discounting their feelings.  I’m just saying that what they’re going through is often the same thing that all kids their age go through.   

So, when your kid whips out one of these zingers, don’t freak out.  Don’t ignore it – we really do need to keep an eye out for depression, misunderstandings and obsessive ideas.  But don’t immediately assume that your child’s attitude is a huge danger sign either.  Sometimes our children are just living through the emotional rollercoaster that we all had to endure while growing up.  Remember, they may have autism, but they’re still kids, too.

A final note: if you’re having a hard time figuring out whether your child’s attitude is normal or if you need to intervene, talk to a therapist who knows about autism and knows your child – even if you have to go find one.  Figuring out why our kids do what they do isn’t easy.  Sometimes we need all the help we can get.

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One Foot in Front of the Other

Sometimes life bites you on the butt.

You’re going along in your normal routine and things are going well. Everyone’s getting fed each day, everyone’s going off to school and work (if not happily, at least without too much drama or trauma) and every once in a while you can get folks together to do something fun. You’re enjoying yourself. You are accomplishing things, moving forward, and so are your family members. Life is great. Then all of a sudden, it isn’t.

In my family’s case it started out with a few health issues. Nothing horrible, just things that needed to be taken care of or things that knocked us off our feet for a week or two. Taken singly, they would have been no big deal, but combined they meant a lot of time spent driving to doctors’ offices, money spent on prescriptions and co-pays, tests and more tests, and a lot of time in bed. They meant several months of playing “are any kids healthy enough to go to school today, and if so, which adult is well enough to drive them?” There was a ton of homework missed and a lot of scrambling to keep up at work and on the home front. Life wasn’t terrible, but it wasn’t easy either. And although each of the issues were small, they just kept coming, one after the other for six months straight.

Then the funerals came. Two of them in fact, both surprises. First one, then when I’d stopped crying a few months later, another. Fortunately neither were for my husband or children, but they were for family members I love very much. People who weren’t a part of my daily life but once had been; people who I treasure and will miss.

Life got even harder for a while. Not only were we dealing with the day-to-day and the extra health difficulties, now we were mourning and helping family members through their grief. We were away from home repeatedly, traveling for hospice and funerals. Suddenly, all the balls we were juggling – school, work, social obligations, regular home chores – started slipping. Kids missed enough school that couldn’t be made up that their grades plummeted. Hubby had to work long hours to catch up at work. I was canceling my volunteer activities left and right, while tearfully trying to find enough clean laundry to dress my family to attend my father’s funeral. Quite simply, for a while there life was really hard.

There is a reason I’m telling you all this. It’s not to garner sympathy (though it does explain why I abandoned my blog for a while.) After all, you have difficulties in your life as well. You have your ups and downs, your hard times and good times. Life isn’t always easy for you either. That’s my point.

As parents we expect that we should always be able to take care of our family. That whatever is going on in our lives, we should be at every one of our kids’ soccer games, every music performance, every karate class. That we should be able to heal every bruise and bump, our kids should pass every class they take, and that everyone should have clean socks every day. We should ensure our kids eat their vegetables and brush their teeth. Heaven forbid they grow up in a house with a bathtub ring or go a day without phone service because we forgot to pay the bill or have to take Oreos to the school bake sale. Heaven forbid that we fail as parents.

Most of the time we can do it. We have enough time, enough energy, enough skills to make it work. If things get a little tight somewhere, we can let something else slide for a short time, then we’re back on our feet and going. Like someone who’s hurrying down an icy sidewalk; we take a few steps, slip a bit, tap dance until we get our footing again, catch our breath then start moving forward again. Run, slip, slide, recover and run some more.

Most of the time it works, but not always. Sometimes the ice is just too slippery. We start walking, our legs go out from under us and we fall. Head first, into a snow bank, and snow goes down the back of our jacket all the way to our socks. Oww.

As parents, most of us don’t have a lot of extra resources; meaning time, money and parenting skills. We’re generally working close to the edge. If we’ve got more time, we do more. If we’ve got more money, we spend more. If we’ve got more parenting skills, we expect more from ourselves and our children. We’re constantly trying to do the best we can with what we have. It just comes with the territory.

As parents of special needs kids we’ve got even more demands on us. There’s more homework, more doctor’s visits, and more decisions to be made. Finances are tighter and the future is scarier. All the struggles and heartaches of parenthood are ours, only they’re amplified. Unfortunately, our resources aren’t. Our tank is always running near empty. If we plan our day right and everything works out well, we can get everyone out the door and back again, homework and dishes done, a hug and a snuggle, then get them tucked into bed so we can start again the next day. As long as there are no hiccups or bumps in the road, we can make it. But sometimes we can’t.

This is the part where I’m supposed to say, “But that’s okay. Do the best you can and it will all work out sunshine and roses.” That’s what most parenting advice articles say. But you know what? Sometimes it doesn’t work out. You know that. Sometimes when you hit the snow bank there’s a great big block of ice in the middle and you get smacked good and hard. Someone gets kicked out of school or gets arrested or ends up in the emergency room. Sometimes life hands us some pretty hard knocks that we can’t make all better, as much as we’d like too.

I wish I had something wonderful to write next. Some magic words that would tell you what to do when those things happen, so you could make the bad stuff go away and get back to your wonderful, boring, normal routine. But I can’t. There are no such words. I can’t tell you how to make things better.

What I can tell you though, is how to not make things worse.

One those (hopefully) rare days when you find yourself bleeding in the snow: 1) don’t sit there screaming in panic and, 2) don’t ignore the bleeding and start staggering back down the sidewalk. Put everything else on hold, deal with the bad stuff, then get up and start moving forward again.

Now this is the part where you say, “Um, duh. I already know that. That’s what I do. When bad stuff happens, I prioritize and take care of the vital stuff first, then try to pick up the pieces of everything else the best I can.”

And that’s the real point to this whole story. When we’re already doing all that we can do in the situation we’re in, we can’t beat ourselves up when sometimes it’s not enough. All we can do is do the best we’re able to stop the bleeding, mop up the blood, blot the tears and get back on the road. Our lives are not easy. We’re going to collect bumps and bruises along the way. Success for us is not going to be getting to the end of the road unscathed – it’s getting to the end of the road. Success is us not ending up sitting in the snow somewhere with soggy undies. Success is every time we fall down, we get back up.

My family life is going better now. Children and hubby and myself are healthy enough to enjoy the glorious freedom of warm weather and no homework. We made it through our latest patch of hard times and we’re back to having fun.

We’re back on our feet, but I want you to take a moment to think about the advice you would have given me if my family and I were still smack dab in the middle of it all. If you and I were sitting down for a cup of coffee and I told you I was feeling like a failure because things were falling apart, what would you have told me? Think about it. Then write those words down. Keep them in a safe place. And the next time you find yourself sprawled out in the snow, with your tuckus in the air and a bump on your head, pull them out and read them.

You’re doing the best you can do in a hard situation. You’re not failing. Do what you can do. Don’t be so hard on yourself. Things would be worse off for everyone without your efforts. Hang in there. You can do this.

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