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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Not doing what I can't

Only a guy would think of this

I'm driving to work this morning admiring the big black pickup in front of me.  I'm a truck girl, what can I say?  I like trucks.

Suddenly something a little odd caught my eye.  Something pink, hanging down below the hitch.

See it? Or rather, them?

Truck balls? Is this a thing and I didn't know about it?

A few minutes later I pass the truck and I notice the driver is a woman.

Now I'm really full of questions.

Does she worry about her balls getting wet when she's driving in the rain?  Or about them getting shriveled when she's driving in the snow?  

What does she do with them when she's offroading?  Is she worried they'll get bruised if she drives over a speed bump?  

Does she keep them in her purse when she's not driving her truck?

Do they come in bigger or smaller sizes than this?  Are they made of hard plastic or are they squishy?  

But the biggest question of all, really:  Why?

 

 

 

Those were the days

Last year after I had that horrible infection and my IUD removed, I went on the pill for a while.  Everything was normal, then SG's vasectomy was declared a success and I stopped taking the pill.  That was November, I think.  I had a normal December cycle, then January was kind of weird because I had two cycles.  Then nothing in February.  I freaked out a little bit, swore under my breath at SG's urologist and peed on a First Response test.  Negative, thankfully.  

March commenced much like February.  Then I started waking up three or four times a night, kicking off the covers and letting the cooler night air dry off the trickles of sweat.  Hot flashes.  I made an appointment with Dr. A and he sent me off to the lab to have all my blood sucked out of my body some bloodwork done. Yesterday was my followup.

One thing I like about Dr. A, he gives you copies of your lab results and writes notes all over them as well.  I enjoy going home and persuing my results and contemplating what a special snowflake I am because my something something  is perfect and my something else is out of range and I get to take some more damn medication or supplement as if that will magically render me Normal.

Anyway.

So even though I finally had an actual cycle last week, according to my FSH and Progesterone levels, I am (or should be) in menopause.  Technically I would say not, because the literal translation of 'menopause' is "cessation of menses."  But I would expect that I'll see very few more trips to the Rite Aid to buy myself feminine hygiene products. 

Menopause.

Its not like its any big dramatic thing.  This is another natural progression in my aging process, it happens to women all the time.  Its not horri-bad, scary-bad, or really even bad.  But just like all of life's First Time's, this is MY first time in this place and you know my mind is running in teeny weeny circles trying to understand who I am in the context of Being Menopausal.

There's the mechanics of it, naturally.Now begins the more careful watching of my chemistry and finding out what will work best for me.  I'm more than a little bit worried about what menopause will mean for me in terms of physical changes, but I'm also aware that starting hormone therapy carries more benefit than risk at this point in time.

There's perhaps a shred of regret that the baby years are truly over.  I didn't really want any more babies, at least not at this point in my life.  I would have been happy to have more kids altogether, but hey, I started late, so I'm grateful I lucked out with two.  No, this wouldn't be the ideal time in either SG's life or mine to add a newborn, nor am I one of those women who enjoys pregnancy.  To be precise, I loathed being pregnant with a loathing typically reserved for spiders and traffic tickets.  So the Not Going to Have More Babies part is really just a twinge of nostalgia for the days when I held first Amazon Girl and then Race Car Man for the first time and for all the first times of everything they ever did after that.  I loved nursing my babies and holding them.  I loved their expressive faces and their first words and watching them learn to move and then crawl and walk and talk.  I could never get enough of gazing into their faces while they slept peacefully in my arms.  Come to think of it, in my arms (or their dad's) was pretty much the ONLY place either of them slept peacefully.   And just like that No More Babies is just fine with me.

I suppose more than the knowledge that my child bearing years are behind me, its the thoughts that revolve around who I am as a person and what this stage of life means in grand scheme of things.  There are a lot of adjectives that come to mind when you think of yourself as Still Young.  "Menopausal" does not happen to be one.

Entering menopause has me feeling less young, less inviting, less pretty, less a participant in the swing and uptick of life.  I'm sure I'm overthinking things, but I can't help but think that I'm somehow less.  Which is silly, and not something I'd ever even consider applying to anyone else that I know.  (See?  Still harder on myself than on you.) Its the nuance between being more in the game than not. Its like menopause is the crossing guard between having your whole life ahead of you and having most of it behind you.  I fear the loss of not just my sexuality, but my desirability.  SG would likely disagree with this assessment and logically, so would I, but logic and feelings are not one and the same and my feelings at this point in time are more in control than my analytical skills.

Billions of women have charted these waters ahead of me, certainly the literature reflecting their combined wisdom and experience is waiting for me to find it.  Short of that, however, it still remains to me alone to develop my sense of self, my understanding of who I really am as opposed to how I might feel at any given time.

Menopause is the end of something, but its not the end of the world and its not the end of me.  New things lie ahead.  I will adjust.  We all will adjust.

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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