Barnmaven

The one where I'm supposed to have the answers

Life is an endlessly-evolving narrative, one with twists and turns and moments of suspense.   Sometimes I think my son's  life purpose is to make sure the twists and the suspenseful moments are the norm rather than the exception.

We had a fun incident with his transportation a few weeks ago, and by fun I mean the kind where you want to bang your forehead on your desk repeatedly.  The kind of fun that makes you wonder if there is a school administrator anywhere who actually knows what their legal requirements are when an IEP is in place.  The kind of fun any parent of a special needs child gets to experience on a regular basis.  Which is why most of us lean toward rampant alcoholism.

There are important factors to note in regards to public school transportation services and special needs children.  If a child's behavior is an adjunct of that child's disability and that behavior does not constitute a danger to the child or to others, the school is required to provide the service.   However, on the day that my son decided to make a big noisy stink because he thought maybe doing so would bring his mother home faster, the school prinicipal decided to remove him from his bus despite the fact that neither his driver nor the aide on the bus thought that his behavior was a danger. The school called me to come get him.  Immediately.  Except I am at work, which they fully well know is an hour's drive away.  SG is at work as well, a 45 minute drive.  My mother was on that day the closest adult who could get him and she would need a half hour to get to the school to collect him.  The principal insisted he be picked up immediately.

What am I supposed to do?

"What would you like me to do?" I ask, a shrill tone creeping into my voice.  

"Well,  if I had a child with your son's behavioral issues I would have a better backup plan," she informs me.

After I curtly advised her that my mother would arrive as soon as possible, I hung up the phone and started picking chunks of my brain off the walls and floor of my office.  

I've since spoken with the district assistant superintendent twice, the director of transportation twice, and this morning we had a followup IEP meeting.  At various points throughout these conversations I have raised my voice at least four times and managed to limit my use of the phrase "call my fucking lawyer" to just once, though I'd be prouder of myself if I hadn't said that at all.

I just hate this shit.  I hate the feelings of helpless anger and shame when I have to deal with the district's inability to understand either my son as an individual or their own legal responsibilities in regards to his educational services.  I hate feeling judged by someone who doesn't have a son like mine, who has never a day in her life had to try to have three or four different backup plans in case things spiral south for her child.  I hate feeling like I have to defend our family and the fact that we do have backup plans - about four or five of them - but that sometimes circumstances dictate that none of them are workable at the moment.  I hate losing my temper and my composure when I'm talking to people to whom my child's well-being isn't as high a priority as I think it ought to be.  And as silly as it may sound, I hate the thought that people somehow think my son's autism is some kind of failure on the part of this family.

I hate that they don't get him.  That it seems to me they see only his behavior and his diagnoses and not the person.  That they don't see his sense of humor -- or when they do notice it, all they can do is say "but he's so morbid" and act horrified.

I want the best for my son, but I often feel I don't know how to provide that or even to find out exactly what it might entail.  I envision a future where instead of the world insisting that my son find a way to conform himself to the needs of the system, the system find a way to understand what my son wants and needs and the best way to help him be his own best person.  

His teachers and his support team at school don't have an easy job, I realize that.  I don't expect saints and martyrs.  And for the most part I believe that his teacher and the people who are supposed to be helping him really do care about his best interests.   I just wish it were easier for us to know what those best interests are.

 

 

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Our real lives

Not doing what I can't

Symbolically speaking

 

Today is World Autism Awareness Day.  Did you know that? (Rhetorical question, and since probably 90% of my two readers have kids on the spectrum very likely a silly question as well.  Whatever.)

I tend to keep myself at arm's length (or better) from groups that seem to have mastered the art of "fundraising for autism by telling everyone how awful it is" or who tend to exclude people living successfully with autism from their advocacy activities.  I'm not an advocate of focusing on the more difficult aspects of autism in order to garner financial support and while symbolic gestures are nice, they aren't as helpful as we all wish they could be.  Trust me, if I thought festooning this blog with puzzle pieces and pink ribbons and equal signs could change the things in this world I think need changing, I'd do it in a heartbeat.  You wouldn't be able to read my words through all the bling.  

I posted a cute Meme that Autism with a side of fries put up on Facebook this morning.  It read simply, "April is Autism Awareness Month.  Or as I like to call it, every single day in this house."

Except that it isn't even that for me -- autism is such a constant part of our life that I don't even think of the word as it relates to us that often.  Sometimes its a happy face thing, sometimes not so much.  I see my son as a person, not as a diagnosis.  The strategies for supporting him are modeled around his diagnosis, but the way I love him is modeled around him.

The public as a whole is far more aware of autism than ever before.  That "1 in 88" statistic that came out last year was a rude awakening for all of us, but it shouldn't have been that much of a surprise.  Autism is far more prevalent than we want to accept.  Sure, I'd like to know why that is, we all would.  As my son's parent I want to know more about how to create a world that he can live in fully than about how or why he was born the way he is.  

I'm not trying to piss in anybody's Cheerios.  A lot of very good people put a lot of effort in to the events and articles and graphics that mark World Autism Awareness Day and Autism Awareness Month.   I think I'm just tired and jaded.  I'm tired of symbolic activism.  Pink ribbons don't cure breast cancer, Red ribbons don't cure AIDS and blue avatars don't cure autism.  They don't ensure my son is less challenged today than he was yesterday and they don't change his diagnosis.  They didn't keep my friend from dying of cancer or my brother from presumably dying of heart disease.  They won't prevent another person from getting autism or breast cancer or leukemia or AIDS.  Symbols are the things we wear to tell others we are on their side, and that's a nice thing to do.  Symbols are also things manufacturers put on things because they know it will make us more likely to buy them.  

Symbols are NOT a substitute for writing letters or making phone calls to your legislators in support of marriage equality, or writing a check directly to help fund a study on autism or cancer or any number of important issues.  There aren't enough symbols in the world for me to express how badly I want to just wrap my arms around every sick, tired, lost, hurting person and tell them I love them and I wish I knew how to make it better.  Symbols are not a subsitute for being an active, involved parent for my son.   So you won't see me "lighting it up blue" today, or any other day, unless I happen to do so by accident.

That doesn't mean I don't want to have research on the causes of autism or the best ways to treat autism in children and adults.  I do.  I'm just...tired of the hoopla that doesn't seem to change much of anything.

Or maybe just a curmudgeon.  

 

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Autism Awareness, So What?

B-WEAR: We're just getting started.

Not doing what I can't

I think I'm starting to get better at this grownup thing.  Perhaps, just maybe.

Race Car Man started a few weeks ago with a new therapist, this time one at a place whose clientele are people with autism (as opposed to a therapist who deals with autism among other things, which for us did not work so well).  I think its helping.  He's had more good days at school, he's starting to get homework again.  My ex had a schedule change at work that allows him to go to our son's classroom two days a week for a couple of hours which is fantastico.  If I could only find a way to make life outside of Minecraft even remotely palatable for this child all would be straight up and down.  You can't have it all. 

Amazon Girl also started with a therapist last week, as the doors of pubescent hormonal hell have apparently opened wide and beckoned her therein.  She's struggling emotionally and needs some support from an adult she can talk to about life, about her parents, about her brother -  which means a third party is required.  Fortunately the last therapist she saw, the one I really really liked, is still practicing and takes our insurance. 

Then on Wednesday nights I still have obedience school with TBone.  And Sundays there's church and then Amazon Girl has her riding lesson, and most Saturdays from here until the sun goes away in the late fall again, I have something to scheduled to do with my horses.  SG has guitar lessons every Tuesday and just got started with some group political thingamajig.  And so on.

Sometimes in between all of that we sit down for a few minutes and breathe and maybe fold a load of laundry.

Last week Race Car Man's therapist asked if we wanted to start him in her next social skills class.  "Sure, when does it start?" 

Next Tuesday. (Two days ago)

Its a class he needs, BUT - it starts at 3:45, just 5 minutes after he gets out of school, AND its a half hour ride away from his school.  And I work full time.  And my husband works full time.  And if I had some time to sit down and sketch out a plan it we can do it but Next Tuesday just does not work for me right now and I for ONCE in my goddamned adult life opened my mouth and said the magic words:

"I'm sorry but that doesn't work for our schedule right now."

I didn't even feel guilty about saying it.  I felt relieved.  I am doing all that I can do for my family and myself right now and I am not going to try and cram one more thing down our collective throats, not at this moment. 

There have been a lot of times in the last several years where I've felt almost all of my waking time was consumed with trying to frantically get everything done that I am supposed to do and failing miserably at it.  Its a horrible pattern - try to do more than you're capable of, fail, drop two or three of the balls you're juggling and then spend a month trying to dig out of the hole you've just created for yourself.  

Perfectionism just isn't going to happen for me right now.

There will be a point where our schedule will open enough to make the social skills class do-able for us.  It will happen.  Just not two days ago.  

Slow down. The tempo isn't as fast as you think it is.

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Pig Wrestling

The first week always sucks

Pig Wrestling

My mother likes to tell people stories about how, when I was small, it would take five adults to hold me down at the doctor's office if I was about to get a shot or a blood draw.   The fear still lingers, but I have learned to willingly submit, even when I know its going to make me feel nauseated, break out in a cold sweat, and probably fall over.  (This is why I'm more than six months late for my six month dental checkup, why I hate to see my doctor even though I love him and why I frequently turn pale when my father takes his blood sugar or gives himself an injection.  Urp.)

My children have inherited my fear of shots.  Amazon Girl outdid me by miles during her preschool years, though she's much better now.  At her most recent checkup she needed four vaccines.  I requested they give her two and have us come back for the others -- I don't like having that many done at a time.   She sat still for them, but she was super mad at me - I didn't realize when I made the appointment that she would need shots and therefore didn't warn her ahead of time.    After I bought her a treat to compensate for her suffering, the lightbulb in her pointy little head went off and now I'm bound by contract for a trip to the ice cream parlor when the next two shots are given.

Race Car Man, on the other hand, still requires far more than a bribe.  He came home early from school yesterday.  Rather, the school nurse called and said to send someone to come get him right away as he had appeared in her office with pinkeye.  Joy!  Cue the dark thunderclouds and Wagner, because any condition that requires the application of anything - particularly in something as sensitive as an eyeball - falls unti the category of Things That Are Traumatic.

The pinkeye doesn't look like its a raging case. so I opted not to bother the doctor and dug out the antibiotic drops from the last round of the dreaded eye crud. I showed him the little bottle and asked him to stop what he was doing so I could put some into his eye, which immediately resulted in screaming so loud you'd think I'd set the little bugger on fire.  I quickly decided that rather than engage in a wrestling match, I'd try again later.  'Later' turned out to be a text to his dad as he was on his way to pick the kids up:  I'm sending some drops for _____'s eye.  He wouldn't let me put any in."

Ex:  So he hasn't had any yet?

Me.  No.

If dead silence on the other end translates tone, I'm pretty sure he's plotting his revenge.  I deserve it.

I don't blame it entirely on the autism, but I will say that having a child with sensory issues makes certain things much more difficult.  Pills, for instance.  He can't swallow pills.  Or at least he thinks he can't swallow pills, which is pretty much the same thing.  Textures are another thing, but the absolute worst is anything that requires him to submit to something being done to him.  The dentist, the doctor, a sliver in the finger or a scrape needing to be washed out -- all of these things require the person attending him to have cat-like reflexes, the ability to lift and secure the equivalent of an 8 armed chimpanzee and the patience of Job.  I still recall the first time the nurse at the doctor's office wanted to take his blood pressure.  When we finally got his fingernails pried out of the ceiling tiles we gave up because it was a sure bet any reading we got at that point would be abnormally high.  Mine was, at any rate.

My good friend whose son not only has an autism diagnosis but also has a congenital heart defect deals with this but multiplied by an easy thousand.  I not only don't envy her, whenever her son has to go for tests or a procedure I want to give her a trophy and a bottle of vodka.  They make it through, and so through our small challenges do we.   

Its one of the harder aspects of parenting for me, that situation when I have to ask my child to tolerate something that hurts or causes them discomfort, especially if I'm asking them to deal with something I can barely deal with either.  Do you suppose that if we'd had an inling that parenting came with an honorary degree in greased pig wrestling we might have at least had a moment or two of doubt about the whole thing?

Knowing what to say

If you can explain to me why I am having such trouble writing lately I will give you a prize.  It would be an ephemeral prize in the form of gratitude, but it would be a really great big mess of gratitude.

I keep starting drafts of posts and abandoning them.  I have all these thoughts rolling around in my head.  I write great long pieces in my head in the car on the way to work and then forget them by the time I get home at night.  There's so much going on right now - a big project at work that came to fruition last week, SG starting work, new therapy and challenges with the boy, dealing with an 11 year old who by all known measures has begun her teen years early, integrating a new dog and a new kitten into the mess of insane that is our household...we really are gluttons for punishment and there's no way I know how to be any different.

I have been feeling ambivalent lately about writing about ...anything.

Autism.  I feel often that I am completely out of my league when it comes to autism in general.  My son, I know him.  When I look at him and listen to him I don't really think about autism, I just think about him.  I find myself caught up in avoiding thinking about autism entirely.  I never wanted to be part of a movement of parents advocating for their kids -- I just wanted to be  a parent.  Some of my online network of parents blow me away on a regular basis with the articulate and passionate way they write about their children and autism.  When one asks for advice on any particular matter the responses are wise and thoughtful and show just how much these moms and dads have immersed themselves in the pool of autism knowledge.   I feel like I know absolute shit about autism.  And even worse, there are times I just wish it would go away.  I want to just enjoy my son and let him teach me the ways he needs me to help him navigate the world.  On a daily basis, though, I get snapped back to reality by a phone call, a meltdown, a sensory struggle or a particular behavior.   I'm ashamed of my desire to just pretend that our daily life is normal, but I'm also keenly aware that I don't want to sound like a person who is seeking attention or sympathy because of my son's autism.  My son is special, not because of his nontypical brain, but because of who he is.  His autism is not a terrible thing or a burden.  All parents have things they do for their children, taking him to therapy or helping him when he's having a struggle is no different than any other parent taking their kid to a doctor's appointment or soothing them when they aren't coping well.  Except that it is different, but I don't want to feel all special snowflake about it.

As you can see, I am conflicted about this issue.  I am conflicted about a lot of things.

I'm conflicted about this project we just finished at work, the end of which is the start of something new and very wonderful but also means a lot of change and I like my life the way it is.  We have spent months on this deal, weekly team meetings and conference calls and integration sessions and loads and loads of homework and writing processes and SOP's.  When the doors on the box opened for the first time I felt like we - my coworkers and our business partners - had given birth, except the kind of birth where it doesn't actually hurt and there's no blood and no poop.  It was a difficult pregnancy in that we had to plan for things we still couldn't yet visualize -- sort of like how you wonder which one of you your baby is going to look like.  There were and still are some unknowns and some things we just have to plan around when we get there.  I've gone through the gamut of fear, resentment, acceptance and finally a place of peace where I know that of all the options my company had for growth and change this was the absolute best choice.  The planning part is done and now the doing part happens, and it means just as much work - if not more - but different than what we've been doing so far.  Change for me is simultaneously hard and easy.  I like the walls of my little box quite well, thank you.  But I don't always mind if the view out of the window I cut into the side of it changes from time to time.  Eventually we all must come to grips with the fact that the old box is the wrong box and we have to move into a new and improved box. 

This post is a good representation of one of the main issues I have with writing.  There is the voice I think I have and there is the voice that I actually have, and there is the fact that I don't want to write about any one thing all the time but there are times when the obvious thing to write doesn't want to come out of my fingers or is something I can't put out on the internet.  Its not a blog about horses or parenting or relationships or autism or politics or feminism or living in the sandwich generation.  Its a blog about ALL of those things.  If I was actually writing to make a living the kids and I would be living in a cardboard box under the freeway, because everything I have ever heard about making a living on the internet is all about "creating your brand."  I don't have a "brand," I just have stuff I feel like writing about, you know?  I don't have a fancy house and I can't do crafts to save my life.  

 There are times when there isn't anything in my mind when I sit down to write, despite having driven home with a perfectly visualized finished piece in my mind.  When it comes time to commit the words to the screen, they don't sound right or look right or I can't find the right way to start or end them. 

Maybe I should get a catchy phrase to use at the end of every post.  Be like Tom and Ray on Car Talk.  You've wasted another perfectly good ten minutes reading my blog.  Then I thank my producers and turn off the feed. 

 

 

 

 

Its supposed to go better than this

We were already set up for a followup IEP meeting yesterday for Race Car Man.  As it turned out, even if there hadn't been one on the calendar we would have had it anway.  Tuesday...

...He had a good morning.  He was medication-compliant.  He got dressed when he was asked.  He rode the bus, stayed in his seat, kept his hands and his voice to himself, and earned a reward:  iPad time when he got to class.

Except when 10 minutes of iPad time was up, he was not ready to be done.  He melted down, all the way to the core.  It was bad, not only bad enough that he had to be picked up but also bad enough that he said some things he really should not have and got himself suspended for a day.  In the wake of events across the country, everyone is on edge and things they might have shrugged off last week aren't getting a free pass this week.

Later that afternoon, the new dog, who had been doing wonderfully well, was unpardonably aggressive.  We are responsible dog owners.  We knew what had to be done.  We checked out some alternatives but none of them were workable.

Tuesday night was kind of a blur of sadness, frustration and fear.  Its Christmas, dammit.  This is not how I hope for the holidays to commence -- with another tough IEP meeting where I get the distinct impression my son's teacher wants him in a different placement, followed by a tough decision about the fate of a much-loved pet who cannot be rehomed and who is a danger to people.

Fortunately at our IEP meeting, I had support from the district counselor whose opinion and mine were the same:  A change in placement doesn't solve the problems.  The problems will still exist and we can't ignore the danger of disrupting a child who is already struggling.  If the accepted model of behavioral therapy is applied, we see that we are trying interventions that aren't working.  Either we are mis-reading the antecedent behavior or the responses we are implementing are not working and we need to figure out new approaches.

We ended the meeting with some plans in place -- my ex will be spending time in Race Car Man's classroom on his weekday off.  The district counselor will work with the teacher, the aides, the school counselor and school psychologist to implement some different positive interventions.  We have an appointment with a new behavioral therapist and a plan to access some skills classes for both my son and for us as parents.  Clearly we all need some more tools for our toolboxes, and although the timing is unfortunate, we've got to move forward with intention and resolve.

I left that meeting to attend another work-related meeting that lasted the rest of the day.  I welcomed the chance to concentrate and engage with a cross-functional team of adults on everything BUT autism and dog problems. 

When I got home last night I spent some time engaging Race Car Man about what happened on Tuesday.  I'm always struck by how honest he is.  He admits his behaviors.  He doesn't try to deny what happened, but tells me he can't control himself when he gets that upset.  And he's right, he can't.  He doesn't have those skills yet.  So we talk about what are things it is OK to say when we are mad and things that will get you in big trouble, and I know we will have to spend some time helping him to practice using different words when he is angry and upset so that the next time it happens he has more tools to reach for. 

I suppose I should be feeling worse than I am, but despite the heavy baggage of the last couple of days, I have a sense of relief.  We have a plan and we have a good team to help my son.  I know that a lot of his issues are temporary -- he will either grow out of these behaviors or he will receive enough therapy to help him improve them.  Naturally, these problems will simply be replaced by other problems, but that's true for every person who ever lived, autism be damned.  I am terribly sad about our dog, but its spilled milk;  I can't undo what happened and I can't take chances with my family or with other people's families.  I salve the wound by offering to foster again after the grandpuppy goes home with her dad, who is spending Christmas with the Washington State family next week.  We are all very excited about seeing him.

And finally, with all that has happened the last few weeks, we've gotten a break in an area where we really needed one:  SG interviewed for and has been offered a job HERE.  ALL THE TIME HERE.  Knowing that I will not be dealing with the upcoming months of February and March without my husband at my side makes a lot of things a lot more bearable.  Its not that his presence solves all the problems, no one can do that.  But his presence means I have someone here who's got my back, who loves my kids, who fills an empty space in my house I didn't even know was there until I met him.  

Happiness tempered by sadness tempered by excitement tempered by fear.  That's life.  That's OK.

It was bad but its getting better

Since my optimistic post about med changes for Race Car Man a lot of things have happened.  Things I couldn't write about while they were happening not because they needed to be private but because I was too mental to be able to talk about them.  All is better now, but I needed a few days of perspective in order to move beyond being completely inchoate and albe to construct full sentences.

Race Car Man had to be escorted home on the bus for a seoncd time,  had to be picked up before the end of the day twice, got suspended for a day and had to have his meds tweaked.  We had one emergency IEP meeting and one bitch-autism-mom discussion with the school district's transportation office. (Parents, know your rights and what's in your IEP.  Bus drivers are NOT allowed to independently suspend services specified in the plan.)

Probably the worst day was the day the kids missed the bus because it was early, the bus driver told SG when he dropped them off at school that she wouldn't transport my kid, then the school called me to tell me he had to go home and couldn't come back without a full IEP team meeting and behavioral plan, and when I called SG to go get him kind of lost my temper when I found out somebody (not mentioning any names but it wasn't me) forgot to give him his meds and then we kind of had some ugly words and by the time I got off the phone with him I was on the phone to my EAP for a behavior therapist referral AND a marriage therapist referral.  The following day of the new dosages, my ex gave all but one medication in the morning and asked me when I was dropping off the meds at school to give it to him then.  Except a change in routine was too much for Race Car Man with everything else that was going on, and I had words with his teacher when she insisted I continue standing there and trying to get him to take the medicine even though I'd been trying for a half an hour and I could tell that we weren't going to be successful and he was starting to get really upset which was not the best way to start his day.  Not to mention I was already two hours late for work.

Not a good week.  No. 

By Friday, though, he managed to make it through a full day successfully and ride the bus home and get all his rewards.  That was followed by a decent weekend for all of us.  SG and I made up, the kids mostly didn't kill one another and we even made it to church AND over to my parents for an afternoon to make Gingerbread houses. 

This week he has done pretty well -- not spectacular, but pretty well.  Work was insanely busy with our annual inventory and so many meetings that I haven't had time to be worried about waiting for the other shoe to drop.  I guaran-damn-tee you that by next Tuesday I'll be all settled in, convinced that this time we've hit the right combination for sure and Mr. Race Car Man will never have another bad day at school ever.  Except of course at some point, he will and once again I will tumble down the slope into a pit of abject despair.

I am astounded by how often I am caught flat-footed when life throws a monkey wrench into the engine that I feel I have finally gotten to run smoothly.  Its a constant thing, why does it always seem to upend me so?  I should be used to it by now. 

Tonight is the company Christmas party, and SG and I are going to go eat some good food, drink some great wine, dance our asses off and enjoy adult conversation with our friends.    I will gratefully put the past two weeks behind me for a few hours and I can predict with modest assurance that tomorrow's breakfast will require at least two mimosas before my head feels right again.

 

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Home

This dance

I was going to post about our awesome new dog Little Sister, the one I sweet-talked my husband into letting me adopt while he was on the road.  She's a Mastiff/Dogue de Bordeaux mix, so fairly big.  Instead, though, I am writing about a meeting I had this morning with  my son's teacher and principal. 

While we've had a lot of very good days since the medication change, the teacher has also seen an amplification of sensory behavior.  The day they used clay in art, he spent the rest of the afternoon obsessively washing his hands because he could still feel the clay.  His shirts bother him, his socks bother him.  Even though his focus improved, his anxiety worsened.  And then yesterday, oh yesterday.  Yesterday prompted today's meet and greet.

My son has three loves:  Video games, computer time and Kindle time.  Everything else in life is something that interferes with that time.  He hasn't yet been able to understand that notgoing to school isn't going to magically increase the amount of time he gets to engage in his digital universe.  He resists doing schoolwork of any kind either at school or at home.  Once he is finally convinced to do the work, he finishes it in mere seconds.  If he brings home a book to read that he has already read once at school he simply recites it to you without even opening it.  (They really need to challenge him more)  He loses more play time by resisting than he gains, but he's not yet gained the ability to recognize the cost of this tradeoff. 

Yesterday afternoon he had earned all but the last two letters he needed in order to get his evening dose of post-homework electronic joy.  However, he was asked to complete some tasks that he refused at school.  Sensing he would not earn enough letters to be able to play Skylanders Cloud Patrol on my Kindle Fire, he attempted to rip pages out of his binder, which is his daily communication between home and school.  Then he tried hiding it so his teacher wouldn't be able to find it.  When it was time to go home, he cooperated to go in line, but once on his bus he refused to sit down.  His teacher ended up having to ride the bus with him in order to keep him in his seat. (I'm not sure why the aide on the bus wasn't willing or able to do this, but I'm grateful that his teacher cared enough to keep him safe.)

Needless to say, we all sat down this morning to review what the school is doing and how we can best support Race Car Man. 

We're adding a couple of options to his daily sheet of letters earned.  This way if he ends the day without having gotten all of them, he will have a chance when he gets home to earn one or two more at most.  Doing his homework without fighting is one option, eating his dinner and putting his dirty dishes away is another.  This way he still has the opportunity to turn his behavior around, and doesn't send him home without any hope of playing his beloved games.  Even though he can eventually calm down enough to just play with his toys, it takes a while to get him past the attitude that life no longer has meaning.

We'll also talk to his doc about med changes next week, and we're going to work together to come up with a reasonable reward system for cooperation in completing tasks at school and homework at home. 

I write all this with optimism, assuming that we will see a change for the positive in his behavior. 

It is such an intricate dance, trying to anticipate the way I ought to move to meet his needs.  One miscalculation and I've mashed his poor feet without meaning to.   There is no formula for the perfect mix of what keeps Race Car Man's engine humming.  We just have to measure things and try them and change them again if they don't work.  The pattern of this dance just keeps evolving and changing, and I must do so as well so that we don't lose step with one another.

On Guilt

My post from last night got me thinking.

I don't know about other moms, but I suspect its the same thing.  Whenever I hear a new theory about the causes of autism, I feel defensive. 

I mean, if vaccines DID cause autism, then I, the parent who made the choice to vaccinate my child, am part of the reason my son has autism.  Or if its the things in my house that made him sick, I bought those things.  I exposed him.

Even if its simple genetics -- those are my bad genes he got.  Well, mine and his dad's, anyway.  Which all leads me to consider inherent Mommy Guilt and to ask myself what good does it actually do?

If one stops to consider that even the best lives have times of pain, sickness, heartbreak and struggle, then it stands to reason that the simple act of bringing a baby into this world is automatically going to cause your child to suffer.  And as your child grows and you have to make decisions about where you live and where they learn and who you interact with and what they wear and what faith you follow (or don't) -- all of these things lead to other things which at some point in time will cause your child pain.   Just choosing to take a certain route to the grocery store might be the one thing that caused you to be in a car accident in which your child was injured.

In this life, it is a certainty that we will all suffer, we will all struggle and we will all ultimately die.  Why then, do we have children?  If we only consign them to certain pain, what's the point?  (Rhetorical question, by the bye.)

Does parental guilt serve a purpose?  Why does it exist otherwise?  (Not a rhetorical question.) 

It stands to reason that the concept of parental guilt is not a new one.  Surely when Cain slew Abel, Adam and Eve must have had more than a few terrible nights wondering where they went wrong.  The instinct to protect our children is incredibly powerful and nearly universal.  We've all heard the stories of adrenaline-fueled parents lifting cars off of their toddlers, of parents hurling themselves in front of buses to push their child out of the way, of parents braving flames in order to free a trapped baby.  The need to protect is instinct, there is no decision process involved.   It would naturally follow, then, that when our child suffers, we feel somehow responsible for not having prevented it.

A little guilt goes a long way.  The parent who feels guilty about working long hours may be prompted to make more of an effort when they are home to spend quality time with their family.  Guilt causes us to try to make the best parenting decisions we can, to learn from our mistakes and to continually improve.  When we want our children to be happy and healthy our parental conscience drives us to be and do better. 

But I think guilt can also go too far.  The parent whose child is sick or has a pervasive disorder - what good does guilt do for that parent?   The parents whose children got sick and died in Holbrook, MA from playing in toxic fields behind the chemical plant, what good does guilt serve them?  They couldn't have known.  The truth is that there are things in life we are never going to be able to prevent.  There are pains and truths everyone must learn as they grow.  They are part of the maturation process, they are the stressors that build our character, our resolve and our resilience.  If we never had our hearts broken, how would we learn to make better relationship choices? 

Life to me often seems like a continual progression from one hot stove to the next.  As I blow on my singed fingers from the last character-building experience, I often wonder from whence the next lesson I learn will come.  And so it is, so it will be, for my children. 

I think its possible to be happy without having to experience pain, but I also think that I'm more grateful for being happy when I can contrast it to the times I have suffered.  The joy of being in love is clarified by the experience of losing a relationship.  The enjoyable and relaxed trail ride is even more satisfying in contrast to the memory of the ride where my horse and I parted company - painfully. 

Still, I find as a parent, that I have yet to learn when it is OK to ratchet back on that guilty defensive posture.  I suppose its natural to react strongly to a perceived sense of being blamed when in fact there have been many times since my childrens' various diagnoses that I have very much felt entirely responsible for every single one of those issues.  Rightly or wrongly, that self-searching is a process I think we all go through when our child experiences something greater than a scraped knee or a cold. 

At some point, though, I had to recognize that blaming myself wasn't going to get me anywhere.   in order to be the parent my children need, I have to let go of self-recrimination and be in this moment, making better choices.  Andyou know, even in the worst case scenario where a parent does indeed make the wrong choice about a babysitter or a pet or a medication or any myriad number of things, self-blame is not a constructive thing beyond the initial recognition of "I could have chosen better."  Recognize it and move on, because the next time you will make a better choice. 

So yes, I recognize that I tend to overreact and jump on my soapbox.  Those moments, though, are useful to me, because they help me recognize the areas in my life that could use a little growth. 

 

And in Other News, Being Born causes DEATH

A newly released study has determined a link between influenza and high fevers during pregnancy to children with autism.

As if we needed another theory.

A since-debunked but long-held theory supposed that autism was caused by distant mothers.  Since then, we've managed to link autism to:

• Genetics
• Vaccines
• Diseases
• PCB's
• Solvents
• Diesel exhaust
• Pthalates
• Phenols
• Pesticides
• Flame retardants
• Alcohol
• Smoking
• Prenatal Stress

And now?  The flu.

I'm left to wonder what doesn't cause autism.

Predictably, the internet is going insane with rampant conspiracy theory and in-fighting between the anti/pro vaccine crowd. 

I'll clarify that I do not have a foot in the anti-vaccine camp.  I am supportive of parents who choose not to vaccinate or to selectively vaccinate their children, but I hope that those parents understand clearly the risk of not having certain vaccines administered to their children.  Thanks to research, many diseases which used to have incredibly high fatality rates are now a distant memory.  However, bacteria and viruses like to evolve, requiring the scientific community to continue to study and to stay ahead of potential outbreaks with newer vaccines. 

I'm a parent who believes that exposure to lots of things helps to limit the number of things that will actually make us sick.  I think there's "good" dirt and there's "bad" dirt.  "Good" dirt has any normal number of bacteria and allergens in it.  For the average child or adult, contact with "good" dirt exposes them to just enough of what's out there for them to develop an immune response.  For healthy adults, this acquired immunity is enough to keep them mostly healthy.  Children, who are more susceptible to viral and bacterial outbreaks, will develop enough of an immunity to either keep them healthy or at least keep their active stage minimal. 

What's "bad" dirt?  Dirt that's got measurably high amounts of toxins, environmental or man-made.  Fertilizer.  The manure pile. Anything on the property of a manufacturing plant.  DON'T EAT THAT SHIT, KIDS.

Vaccinations recommended for children today cover a wide range of potential diseases.  While they are all truly optional, there is plenty of evidence to support administering them to as much of the population as possible, particularly to children.  The current standards recommend childhood vaccines for:

• Hepatits A
• Hepatitis B
• Diptheria
• Tetanus
• Pertussis
• Meningitis
• Polio
• Pneumococcal disease
• Measles
• Mumps
• Rubella
• Influenza

Newer guidelines recommend inoculating girls against Human Papilloma Virus at age 11.

Now I'm not going to tell you which of these disesases you oughtto vaccinate against.  Presumably you're all adults and presumably you either already know what these diseases do and what they affect and what the case-mortality rates are, and even if you don't you surely know how to use Google and Wikipedia.  I simply wish to illustrate that though there is theory that vaccines cause harm, what gets lost in that argument is what amazing things vaccines have done, such as pretty much eradicating smallpox, which killed about 30% of the Native American population on the West Coast in the 1700's, and killed somewhere between 300 and 500 million peopleduring the 20th century.  Today the only known smallpox viruses in the world are in petri dishes in labs somewhere.  We hope, anyway.  The important thing to know, though, is that inoculations do an incredible amount of good. 

Do drug companies have a responsibility to do everything possible to insure their procucts are safe?  Absolutely. 

There are those that believe that vaccines cause autism and there are those that don't.  I fall into the category of "it hasn't been proven but it could be possible but at the same time there are big risks and small risks and I don't want my kid to get polio" camp.  There was a time when vaccines were stabilized using a mercury based substance known as Thimerosal, and this is the most often cited reason why "vaccines are bad."  Now, my son has autism, and none of his vaccines were stabilized with Thimerosal.  In fact, Thimerosal is being phased out of most vaccine programs in the US and Europe simply because people do not really want to have microsopic amounts of mercury being shot into them along with their vaccines.  The vaccines my children received were stabilized with egg protein.    The thing is, vaccines DO need to be protected against infection growth.  In 1928, 21 children recieved vaccines that had been placed in a preservative and of those 21 children, 12 died of a staph infection. 

Do we really need vaccines?  I think so, but only you can decide that for yourself and your children.    But vaccines aren't the only thing being blamed for autism.  If you really want to prevent autism, so far as I can tell, you pretty much need to stop breathing, eating, drinking, driving, walking outside and living in your home, because all of these things/environments have been linked to autism at some point.

So here's my point and its one I've made before but God knows I love repeating myself (just ask my husband and children):

To all the people who are now going to send me articles about how my prenatal influenza (which I didn't have, by the way) or the chemicals in the chewing gum or the vaccines or the WHATEVERTHEFUCKANYTHING caused my son's autism?  Please JUST DON'T.

Let the science community work on finding the causes of autism and begin to form programs to help prevent it. 

MY interest is not in the why of autism, but in the how,  as in, how to support my child with autism.  How to make sure he gets all the classroom- and home-based assistance possible in order to be the best self that he can possibly be.  To do all of the possible interventions to help drive down the likelihood that he will become dependent on alcohol or drugs to cope with his condition.  To normalize autism for the rest of the world so that they see my son as a person, not as a thing.  To advocate for children and adults with autism and spread awareness that there are many, many people among us whose behaviors we might not understand but who have amazing minds and amazing abilities.  To help others recognize the breathtaking beauty in the simplest of developmental gains for people who are affected with autism.   To be a support system for other parents who are coping with autism in their lives. 

That's the important stuff, right there, folks.