The Imperfect Mother

Last week I accidently double-dosed my son.  Instead of getting one of each of his prescription drugs, he got two.  Two brown pills, two white ones, two green and two gray, plus a double dose of vitamins.  A handful of pills twice as large as it should have been, twice as potent and with twice the side effects. 

Some of you may argue that if we weren’t giving our boy drugs in the first place then he couldn’t have taken too much.  You’re right.  But without them there’s a good chance he wouldn’t still be alive, either.  When he was younger, we had the choice of either putting him on drugs or eventually losing him.  It was that simple.  No medicine comes without risk, and the potential side effects of his prescriptions are scary, but they are less scary than the situations we found ourselves in without the drugs.  If you and your family have not had to make similar choices, I’m delighted for you; but my husband and I did.

We have a method in place to prevent medication errors.  My son has a medicine box with compartments for every day of the week, morning and night.  At the beginning of each week I fill them, double checking to make sure I’ve made no mistakes.  Using the box means he can learn to take his meds himself and I can check to make sure he’s done it correctly, reminding him if he needs it. Up until now the system has worked.

But one night last week it didn’t.  He’d gone to bed and was asleep by the time I checked the medicine box.  Thursday’s pills were still in the box – he’d forgotten to take them.  So I picked them out of the box, woke him up, gave him the drugs and sent him back to sleep.  Then I realized that it wasn’t Thursday.  It was Wednesday.  I was a day off.  He’d taken Wednesday’s medicine and then I’d given him Thursday’s on top of it.  I’d double-dosed him.

Horrified, I went to the phone, dialed information and was connected to California’s Poison Control Center.  A calm voice answered and sent me to our medicine cabinet, to list the drugs and dosages given.  There was a pause, then the nurse came back with a verdict.  While the amounts of the medicine my son had taken were not recommended, they were below dangerous levels.  My son would be fine.  We were lucky. 

I hung up the phone and buried my face in my hands.  What if things hadn’t turned out okay?  My son’s drugs are big, scary ones.  I didn’t know the possible outcomes for overdose on these drugs, but I could guess.  Dozens of scenarios went through my mind, none of them pleasant.  What if my mistake had injured my child?  What if my next mistake did or the one after that?  As a human I was going to err, there was no getting around it.  Was it just a matter of time before I really blew it and he got hurt?

I sat there with tears running down my face, overwhelmed by guilt, and I remembered other times I’ve failed my children.  Medical decisions I should have made sooner or differently, discipline that had been too harsh or too lenient, therapies we could have tried that might have helped (if we could have afforded them) – the list was long.  The memory of each incident added to the guilt I was already feeling.  What had ever made me think I was smart enough or capable enough to be a parent?  I couldn’t do this.  I was inept and my children suffered for it.

I sat like that for ten minutes, overwhelmed by my guilt and self-pity.  But after ten minutes I dried my tears.  Years ago, I’d learned something from Dr. Laura, the ever-opinionated, often controversial radio talk show host.  She’d said guilt is only useful until it causes us to change our behavior; after that it just gets in the way of us doing what we need to do.  She’s right.  If we let guilt paralyze us, then we don’t act.  If we let guilt rule us, we make bad decisions that ultimately hurt our children.  As a parent, my child can’t afford for me to wallow in my guilt.  He needs a mother who can recover from set-backs and do what she can to help and protect him now, instead of beating herself up for her failures in the past.

It’s not that after ten minutes my guilt went away.  As the parent of a special needs child, my guilt never goes away.  Depending on our circumstances, I feel it less or more, but it never, ever fully goes away.  No matter how well things are going, there’s still a small voice in my head that says if only I had done things better, my son wouldn’t have difficulties.  He would be functional despite his autism; he wouldn’t need an aide at school; I’d know he could live independently after I’m gone.  The voice points out each of my imperfections and magnifies them, prophesying how they will hurt my child and blaming me for all of his challenges. 

I know the voice is a liar.  I am imperfect and I can’t change that.  I’ve made mistakes and poor choices, and in the future I’ll make them again.  I’ll never be happy about my failings – I will always feel guilt.  But I can’t let it win.  I can’t let the guilt paralyze me.  I need to be able to get out of bed each morning and do the best I can and accept it as enough.  Once my guilt has quit being useful I need to push it aside and move forward, otherwise my child will suffer. 

I also needed to be realistic.  Yes, sometimes my failings had hurt my child, but for the most part the damage done had been minor, and sometimes there were even silver linings.  When I’d lost my temper he learned how to deal with an angry person.  When I was unable to help him he had learned independence.  The times I couldn’t play with him, he learned to entertain himself, and when I hadn’t intervened quickly enough in sibling squabbles, he learned to deal with conflict.  Are those the ways I wanted to teach him those skills?  No, but he’d learned them nonetheless.  While some of my mistakes have harmed him, a few of them had taught him to deal with an imperfect world.

I have many faults and as a mother, guilt will always be my companion.  I can either let it rule me or I can function in spite of it.  One day, despite all my best intentions, a mistake of mine may hurt my child.  But failing to act or make decisions because I’m overwhelmed by my guilt and fear would be a big mistake, too, one with big consequences.

I know I’m not the best mother in the world, but I am the only mother my child has.  He needs me, as imperfect as I am. 

 

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Why Your Child Needs to Learn How to Talk Like a Pirate

I apologize, but I really blew it.  I have failed you all big time.  I forgot to let you know that every year, September 19th is International Talk Like A Pirate Day.  Now you’ll have to wait a whole year before it comes around again.

Some of you might not be all that upset about missing International Talk Like A Pirate Day.  You may feel that you can get along just fine in life with never learning how to exchange basic pleasantries with your neighborhood swashbucklers.  That’s fine.  It’s your life and you can choose how to live it.  But it’s not fair to our children if we don’t encourage them to learn.  Our kids have enough social problems already, it’s just not right to impair them further.

After all, if you child has Asperger’s/high functioning autism, he or she is a Geek.  (If you don’t believe me or aren’t exactly sure what a Geek actually is or you think the word “Geek” is an insult, go read my post “Your Child is a Geek (and That’s a Good Thing)”.)  As a Geek, when he grows up there’s a good chance he’ll end up surrounded by other Geeks.  If he goes to college, he’ll probably end up in a Geek major (like biology, chemistry or art.)  He’ll have Geek classmates and once he gets a job, he’ll have Geek co-workers (like computer programmers, musicians or engineers.)  Hopefully by that time your child will have the appropriate social skills to make friends in his Geek environment.

Unfortunately, while a lot of research has gone into figuring out how to teach our kids how to get along in the typical world, not much has been done to determine which skills are necessary for them to survive in the Geek world.  Which is too bad, because while it’s certainly important for them to know how to interact with “normies”, it’s probably in the Geek world where they’ll find their friends and spouses.

Think about it – most folks make friends with people who have similar interests.  That’s true for typical people and it’s true for those with autism.  We like having other people around who are into the things that fascinates us.  For typical folks that might mean cars, sports, quilting, gardening or riding dirt bikes.  For Geeks it’s more likely to be Ham radio, astronomy, World of Warcraft, Pokemon or building an historically accurate life-sized castle using only the tools available during a particular time period.  (Yeah, for real: http://ozarkmedievalfortress.com/.  Larry the Cable Guy helped, too.)  Whatever our kids’ areas of interest, they’re going to find other folks who share those interests.  Our job as parents is to make sure they’ve got the tools to interact with them once they do.

Like I said, not much research has been directed toward helping our kids develop those skills, which means you’re just going to have to take my word that I know what I’m talking about.  (Is this a great gig or what!)  In my extensive research (developed by successfully working as a computer programmer on a variety of multi-person teams and hosting some kickin’ poker parties for coworkers) I’ve learned the following (listed in order of importance):

1)      Geeks don’t like stinky people any more than anyone else does.  Therefore, we need to teach our kids good hygiene skills.

2)      In order to fit into a Geek group, one has to have knowledge about whatever the group’s main interests are.  However, knowledge in other typically Geek areas of interest can carry a lot of weight, too.  The guy who’s into making chain mail is going to be more interested in listening to someone talk about how to build a functioning light saber than the guy who’s into football will.  Geeks attract Geeks, not matter what their affiliation.

3)      The status of any particular person in a Geek group is measured by his knowledge about interests shared by that group, modified by any tendency he has to act like an arrogant jerk or ignore social rule #1.  Geeks like smart people unless they’re arrogant or they stink.

4)      There are a few Geeks who feel anyone who isn’t as knowledgeable about their areas of interest as they are is stupid.  These guys are the arrogant jerks.  Often they stink.

5)      If someone can make a bunch of Geeks laugh by making intelligent jokes about that group’s areas of interest, he’s totally in, even if he isn’t the most knowledgeable guy in the room.  Geeks have a great sense of humor.   Okay, jocks may not get their sense of humor, but other Geeks do.

What all these social rules boil down to is, the more our kids get into Geek areas of interest, the more likely they are to have friends.  While the typical rules of society will still apply to them (they can’t call people stupid and they have to bathe), their knowledge is going to play a big part in their social acceptance in the Geek world. 

And that’s why your kid ought to learn how to talk like a pirate.  So that one day when Talk Like A Pirate Day rolls around, he’ll be able to talk to that cute girl who sits next to him in Computer Programming 101 and he’ll sound like a suave, charming knave instead of a doof, and then there will be a courtship marked by trips to the Renaissance Faire and the gifting of duct tape roses, a wedding complete with a minister dressed like Yoda, and eventually, the pitter-patter of little Geek feet.  Or to simplify: you want to be a grandparent one day, don’t you?

– Cassie

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Not a Nice Mommy

Once I was a nice mommy.  It was a long time ago, back before I had children.  Back before I had three wonderful, creative, stubborn, strong-willed, determined children who would have eaten me alive had I not learned to stand firm.  I had great plans before I had children.  We were going to have a lot of fun.  I was going to be a wonderful mother, understanding and kind, and I was going to teach my children to be thoughtful, caring people.  But my life turned out differently.  I learned that if my children were going to grow up to be nice people, I didn’t always have the luxury of being one myself.  A nice mommy isn’t always the same thing as a good mommy.

A nice mommy wouldn’t make her child do work if he was tired.  No homework or taking out the garbage or cleaning up his room.  But a good mommy would make her child do it, even if he was tired.  She’d know that if the work was important, it was important that he did it.  If he was super-tired she might let him take a break first or do it tomorrow, but a good mommy would make sure he did the work he was supposed to do. 

A nice mommy wouldn’t believe someone if they said her child had misbehaved; after all, she knows her child is a good kid.  A good mommy knows that making bad choices is part of learning how to make good choices.  If her child misbehaved, she’d view it as a chance for him to learn how to behave better next time.

A nice mommy thinks talking to her child about his bad behavior is sufficient to change it.  A good mommy knows that discussions are an important part of the learning process, but if they’re not working, a good set of consequences might do the trick.

A nice mommy lets her child win arguments because she doesn’t want to be mean.  A good mommy knows when to be flexible and when to be an authority figure.  After all, if he doesn’t learn to respect authority, he’ll never be able to hold a job when he grows up and he might end up in jail.

A nice mommy always puts her child’s feelings above her own.  A good mommy knows her child needs to learn to respect other people’s feelings or he’ll never have friends.

A nice mommy doesn’t want anyone to ever say anything negative to her child about his abilities.   A good mommy knows that the only way someone can improve themselves is if they have an accurate idea of both their strengths and weaknesses.

A nice mommy doesn’t want to hear bad things about her child.  A good mommy doesn’t like it either, but she listens because she knows she can’t help him if she doesn’t face his difficulties.

A nice mommy wants her child always to be happy.  A good mommy wants her child to be happy too, but knows that sometimes building his character is more important.

A nice mommy makes sure her child is always fully supported.  A good mommy tries to balance support with teaching her child independence.

A nice mommy wants her child to never fail.  A good mommy knows in order to grow sometimes you have to risk failure.

A nice mommy believes her child’s disabilities are an excuse for poor behavior; that it’s not his fault because he has autism.  A good mommy knows her child’s disabilities make it harder for him to behave, and that sometimes that means he’s going to have to work harder to learn to behave.

A nice mommy thinks everyone should be nice to her child because he has a disability.  A good mommy wishes everyone would be nice, but she knows the world isn’t like that so she has to teach her child how to survive anyway.

Nice mommies think “to advocate for your child” means fighting for your child.  Good mommies know sometimes it means fighting for your child, sometimes it means fighting with your child, and sometimes it means fighting your own instincts.

Nice mommies are trying to make their children’s lives easier.  Good mommies know that the real world is tough, and the more skills their child has by the time they’re grown, the easier their life will be.

Nice mommies love their child.  Good mommies do too.

Lord, please give me the strength to be a good mommy.

 

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Examples of the Geek Social World in Action

In keeping with my intent to illustrate the inner workings of the Geek social order (so you’ll all know what Asperger’s/high functioning autistic/similar looks like all grown up) I’ve been checking out the news from this year’s Dragon*con.  Dragon*con is a huge convention for fantasy fiction/science fiction/anime/manga/video game/steampunk/etc enthusiasts.  Yup – it’s a geekfest.  It’s like Comic-con that’s held in San Diego, but I caution you to not bring that comparison up for discussion if you’re talking to convention goers – because all true geeks have a favorite con and they will defend that con to the death and that’s just someplace you don’t want to go with folks who’ve got a foot on the OCD (Obsessive Compulsive Disorder) boat.

Since all things Geek are really popular right now, there is no shortage of articles about Dragon*con.  I’ve picked out a few that I think really do a good job of describing Geek culture.  In order to get the full effect of the articles, READ THE COMMENTS!  That way you get to see real live Geeks in their own environment, interacting with each other.  Things to look for:

  • Attempts to establish a pecking order – Geeks can be very competitive
  • The love/demand of precise definition of terms and categories
  • Obsessive personalities
  • Self-identification and self-value derived from their skills, knowledge and wit
  • “We reject society because society rejected us”
  • There are girl Geeks as well as boy Geeks – they get married and have Geek kids
  • Geeks have friends

The first article is a field guide to help you identify the various subtypes of Geeks.  The comments are particularly enlightening.

http://geekout.blogs.cnn.com/2011/09/02/a-field-guide-to-the-geeks-of-dragoncon/

The following is a great discussion about hipsters co-opting the nerd subculture to prove their individuality (and how that really pisses of Geeks who’ve earned their Geek status by surviving social alienation in their school years.)

http://geekout.blogs.cnn.com/2011/08/31/nerds-and-hipsters-the-yin-and-yang-of-american-subcultures/

And this is a short film shown at Dragon*con to promote social skills.  Really.  (The first part of the film is references to commonly used phrases in science fiction/horror movies.)  They should have added references to poor hygiene as that’s honestly one of the biggest complaints from folks who attend geek cons.

http://www.geeksofdoom.com/2010/09/04/dragoncon-2010-watch-now-what-not-to-do-at-the-con/

 – Cassie

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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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