Ten Reasons Why Public Restrooms Should Not be Transgender-Friendly

Next to Prince’s shocking death, the issue dominating news outlets and social media is the one surrounding trans people’s use of public restrooms.  The big question is: should they be required to use restrooms that correspond with their biological gender, or should they be allowed to use restrooms that correspond with their gender identity?

Wake up, people!  Why is this even a discussion?  The answer is obvious.  Of course transgender people should only be allowed to use public restrooms that correspond with their God-given gender.  Here’s why:

  1.  Transgender people are notorious sex maniacs and child rapists.  It’s a known fact.  Seriously.  Stop and think about the transgender people you know personally.  Total sex maniacs and child rapists, right?  Mmm hmm, I thought so.
  2. It is a known fact that the wafting aroma of feces and air freshener, coupled with the sound of piss hitting water from behind closed stall doors is a total aphrodisiac to perves like transgenders.  If we let them in the door of the women’s restroom, we’re seriously just asking for it.
  3. We need to protect our kids.  If a kid is faced with a trans person, especially in a restroom, who knows what long-term effects it could have?  At the very least, the kid will probably be plagued by PTSD and have to undergo Christian-based counseling, and worst-case scenario (assuming they’re not molested!), they may turn trans themselves!
  4.  Non-trans people never assault, molest, or harm anyone in public restrooms.  So, obviously, if we bar trans people from using the wrong bathrooms, we can cross the dangers of public restrooms right off our list of worries.
  5.  Everyone knows that most sexual assaults are committed by trans people, and not non-trans people.  Look it up!
  6.  The best way to earn your way into God’s good graces – and therefore heaven – is to be as intolerant and exclusive of people who are not like you as possible.  Not only does God hate fags, He also hates everyone who is not a white male cisgender heterosexual American Christian Republican.  It says so right in the bible!
  7.  Speaking of God, if He had meant for people born with penises to wear dresses, He wouldn’t have invented pants, and if He had meant for people born with vaginas and boobies to wear wingtips, He wouldn’t have invented Victoria’s Secret.  Think about it.
  8.  If we let trans women use women’s restrooms, and trans men use men’s restrooms, what’s next?  Are they going to want to eat at the same restaurants as us, too?  What’s to stop them from frequenting our grocery stores and banks and schools?  They may even demand to be allowed to drink out of regular-people drinking fountains!  They’ll take over the world, I tell you!
  9. We normals should not be made to face things that make us uncomfortable.  I mean, seriously.  If trans people are uncomfortable with the law of the land, it’s just their punishment for being so … not normal.
  10.   Because, cooties.  Ick.
9

The Road to Recovery is a Bumpy One

When we last tuned in, I had visited my doctor again and was sent home without the catheter and many wishes for happy peeing.

(I never dreamed I would be writing so much about not only peeing, but my peeing.)

My doctor was confident that I would see noticeable improvement over the next few days.  This set up certain expectations on my part, expectations that were quickly dashed.  For the next several days, I had an extremely difficult time peeing, and I was miserable and filled with thoughts of gloom and doom.  What if this is my permanent condition?  I thought.  What if I have to have another catheter placed?  What if … what if I have to self-catheterize?

I spent a lot of time crying, swearing, and generally wallowing in self-pity.  It seemed so unfair that I put myself through such a horrendous surgery to fix a certain problem, only to end up with the opposite – and worse – problem.

Also, Wednesday (the day after I had the catheter out) I started feeling under the weather.  By Friday it was clear that I had a bad cold, or the flu, or some other communicable disease.  Kevin was also sick, as was Finn.

By Sunday, I had made up my mind to call my doctor (the uro-gynecologist) Monday morning, about my continued difficulties peeing, come what may.  I was beginning to fear kidney damage, sepsis, or who knows what.  But suddenly Monday morning, there was a noticeable improvement.  And things have continued to gradually improve since then.  Still not back to normal, but peeing is no longer an ordeal, and I’m no longer worried about dying from urine poisoning.

The things we take for granted.  Next time you visit the loo, I want you to really be present in the moment.  As you listen to that golden shower, and feel the warm flood being released from your body, rejoice.  Do it for me.  In fact, it will make me very happy to know that people the world over (or the three or four of you who read this blog, anyway) are thinking of me as they shake the dew from their lilies.

Meanwhile, by yesterday morning, in other respects, I felt like death.  I dragged myself in a feverish fog to my GP, and was diagnosed with pneumonia.  I was given a breathing treatment in the office and sent home with a prescription for a z-pack and an inhaler.  After two doses of the antibiotic, I am feeling more like myself today.  Hopefully I will be completely well and back to my obnoxious self within the next few days, and this will all fade like a bad dream.

In other news, the Oregon state bar exam results were published on the state bar website last Friday.  I am not overstating it when I say that it was absolutely thrilling to be sitting here with Michael, and to scroll down and see his name among the mere 60% of candidates who passed.  There has been a part of me over these six weeks since he was up in Portland taking the bar exam that was very confident that he would pass – because I know how smart he is, how well he thinks on his feet, and, well, there was probably a naive part of me that just couldn’t imagine him not passing.  I didn’t start to doubt until the day the results were going to be posted.  He, on the other hand, had serious doubts all along.  He came back from Portland saying that the exam – especially the second day – was incredibly difficult, and the reality is that he only devoted less than three weeks to studying, given that he has a law practice to run.  Many people study for the bar for months – full time – and still don’t pass.  So, I’m kind of in awe of him right now (I’m sure this will pass next time he pisses me off).

So, Oregon.  We have no definite plan at this point.  In all honesty, now that this hurdle is out of the way, moving seems even more daunting than it did before.  Maybe because before he took the bar exam, it was all hypothetical.  Now, it’s like, are we going to put our money where our mouth is?  So much to figure out.  A law practice to wind up, a house to sell, and adult kid who can’t yet support himself, but who also doesn’t want to leave California.

2

Fifteen Days Post-op

waterfall-02I know, you’re all dying to know if I’m peeing yet, right?

I went back to the doc this morning for another voiding trial.  I peed this time.  I expected that successfully peeing after this ordeal would look a lot different than it actually looked: I expected a gushing river, by god!  But no, it was a mere trickle, and that took a lot of effort.  I was able to empty a little more than half of the sterile water they put in, and the doc was satisfied with that, which, honestly, shocked me.  When she came in and said, “You’re good to go!” I thought I misheard her.  She explained to me that it’s very much like having one’s arm in a cast for several weeks; when the cast comes off, the arm is a little weak and thin, a little atrophied from non-use.  Same with a bladder being continually drained and compressed by a catheter: it needs to be exercised again, and she’s confident that I will see a lot of improvement over the next few days.

I’m wary, cautiously optimistic, and so freaking glad to be rid of that awful catheter and pee bag.  It’s been the one thing holding up my recovery it feels like; my pain from the surgery is pretty much gone, my energy is gradually coming back, but hauling that damn thing around – and not even being able to wear actual clothes – it was such a total drag.

So, I’m not back to 100%, but I’m getting there, and this was a big step.  I still have to take it fairly easy for the next month or so – no heavy lifting or housework, no power walking, etc., because everything is still healing inside, but I feel the funk lifting.

If anyone out there comes across this and is anticipating the same surgery at some point, just know that the first couple of weeks after the surgery will be fucking misery.  Expect setbacks.  I have not talked to a single person who has had this surgery who has not experienced some form of setback.  It’s a major surgery, and the recovery is not easy.  That is not to say “don’t do it.”  Living with pelvic organ prolapse and incontinence is also misery.  The general consensus is that the surgery is worth it for long-term quality of life.  If you can resign yourself to a couple of weeks of a form of hell, you will be good to go.

6

Nine Days Post-op

My recuperation is slow and discouraging.  I went back to the doctor this morning for another “voiding trial,” and I was super hopeful, but it turned out that I still can’t pee on my own, so I’m stuck with a catheter and a bag of urine strapped to my thigh for at least the next week.

I think it’s safe to say that I’m rather depressed at this point.

Michael is mostly back at work – he does have a practice to run, after all, and we have bills to pay.  The kids are on spring break and I feel utterly disconnected from all of them.  I spend my days in pajamas (there aren’t many clothes you can wear, as it turns out, with a bag of piss tied to your leg), resting as much as I can, and feeling very gloomy.  I still don’t have much appetite, and have now lost seven pounds since surgery.  I’ve been reading some, watching a few movies.  I didn’t even pick up my knitting for a week, and even now don’t feel very enthusiastic about it.  I am driving a little.  Went to the store yesterday, hoping I wouldn’t run into anyone I know because I don’t feel like chatting with anyone (I didn’t), and it completely wiped me out.  I came home and slept for an hour and a half.

Next week we need to get back to some semblance of structure and school.  I feel bad that no school has taken place since a couple of days before my surgery.  I feel like I’m failing my kids.

I’ve decided that I would not make a good candidate for any long-term illnesses, so I’ll pass on all of those, thanks very much.

Years ago when I was a manicurist (yes, I was a manicurist!), I had this regular customer, and older woman named Lydia.  Every week when she came in, she reeked of urine.  Back in the day, women just had to live with incontinence.  I think of her often, and I think, well, it was either that or this.  Hopefully this will turn out to have been worth it.

Hopefully there are better days ahead.  Hopefully in a few months I’ll be able to look back on this ordeal and laugh about it.  For now, it sucks completely.

9

Four Days Post-op

My surgery was this past Monday morning.  I barely slept Sunday night, I was so anxious.  We got to the hospital at 5:30 a.m., and I was taken back to pre-op right away, where I spent the next couple of hours doing all of the pre-op stuff: changing, getting a routine pregnancy test (which, seriously, made me laugh), answering a thousand questions from the nurse assigned me, getting an IV, and meeting briefly with the anesthesiologist, surgeon, and OR nurse.  I said good-bye to Michael, who had to get home and get Joey to school, around 7:30, and then I was wheeled into the OR.  As soon as they started wheeling me away, I broke into tears.  I have recently become very aware that my first response to extreme stress is crying; this tough girl is really just a big crybaby.  Anyway, in the OR, I was cheerfully greeted by the surgeon and other people behind masks.  The last thing I remember is being hoisted from the gurney to the operating table; fade to black.

I came to slowly and groggily, with no idea of how much time had passed.  Everything is very fuzzy.  I could hear voices and sense movement, but that was about it.  Eventually, I woke up properly, crying.  Anesthesia has resulted in crying for me in the past.  Michael was there.  I think I told him that I wanted to go home, and I think he chuckled.  My throat was very scratchy, presumably from being intubated during surgery.  Nurses were fussing around me.  I was very cold and shaking.  They put blankets over me.

A little while later I became aware of pain, and that’s what I remember the most from that first day.  The pain was horrendous, and I had not been anticipating that.  It was like the peak of the worst labor contractions – which I could handle because labor contractions came and went in waves, while this pain did not leave.  It was that peak of the worst labor contraction, but with no letting up.  I was pale (apparently) and shaking and crying for the pain.  The worst part is that I can’t take the usual pain meds (Vicodin or Codeine), as they make me vomit violently.  So they kept trying different pain meds and nothing was touching it.  They tried six different medications, and nothing was giving me any relief.  I thought I was going to die – I think I wanted to die.  Finally, I was given a bolus of Dilaudid in my IV, which immediately made me vomit, but which finally brought me relief.  Within fifteen or twenty minutes, I was praising Jesus (okay, not really).  They then set me up with a Patient Controlled Analgesia (PCA), which allowed me to deliver a small dose of Dilaudid through my IV every ten minutes via a pump which I controlled with the push of a button.  They were also giving me Pepcid through my IV for nausea.  I didn’t hit the button for more Dilaudid until a few hours later, and the pain was well controlled until the middle of the night when the Dilaudid seemed to become less effective, so they added a high dose of Motrin orally for pain and inflammation and an oral muscle relaxer.

So that was the first day, marked by horrendous pain.

Tuesday it was anticipated that I would be discharged around noon.  They weaned me off of the Dilaudid, and kept me until they were sure that the oral regimen of pain meds was working, as that is what I’d be sent home with.

This is the surgery I had, with a partial hysterectomy:

IMG_1796

This surgery, again, was done to remedy pelvic organ prolapse which resulted in urinary incontinence.  I’m nothing if not an open book, folks.  This is a problem that many, many women have, and it’s an embarrassing one, so it’s not something much discussed openly.  So, let me be the one to say, if your uterus and/or bladder have fallen, if you pee yourself all the time – you are not alone.

Also, although the pamphlet I got only talked about the surgery being done through abdominal incisions, my entire surgery was done vaginally, so I have no external incisions.  As bad as this is, I think it would be even harder and more painful had it involved abdominal incisions.

Anyway, any long surgery requires that the patient be catheterized, and pretty much any surgery involving the bladder and/or urethra is going to necessitate catheterization for a period of time after the surgery.  We did a “voiding trial” before I was discharged on Tuesday, which is a fancy was of saying that they filled my bladder with sterile water, removed the catheter, and then had me try to pee on my own.  I tried repeatedly for over an hour, and nothing.  It was the strangest and most frustrating thing to feel like you have to pee worse than you’ve ever had to pee, but it just ain’t happening.  I finally begged them to put the damn catheter back in already, or my bladder was going to bust I feared.

So, I went home with a catheter and a big pee bag, which was good for some laughs with the kids when I pretended it was a fancy new handbag.  I was bummed, to be sure, but this was not wholly unexpected; I was told before the surgery that there was a pretty good chance that I would go home with a catheter.

I went back to the doctor yesterday morning – so three days post-op – for another voiding trial, and still nothing.  It was discouraging.  They put another catheter in, this time with a smaller bag that is strapped to my leg (which is slightly more handy, at least), and sent me home.  I don’t go back to try again until next Wednesday.  If I still can’t pee then, I don’t know what I’ll do.

So far, it’s been a pretty rough time.  I think because I had such a smooth and relatively quick recovery from my mommy job last year after so many people told me how tough it would be, I expected this recovery to be fairly easy.  I am popping a cocktail of pain meds every few hours, which make me woozy and exhausted, so I am in bed most of the time.  The meds also make me nauseous, so I’m also taking an anti-nausea medicine which also makes me drowsy.  Although I’m exhausted, I sleep in fits and starts, and my sleep-wake cycle is all screwed up; half the time I don’t know if it’s day or night.  I have very little appetite, and have lost 6 pounds since Sunday.  I pretty much feel like shit.

Michael has been doing everything – on top of working (mostly from home), he’s cooking, bathing kids, getting them to their various activities, mediating fights, and trying to keep the kids out of the bedroom so I can rest.  This is impacting the whole family.  Hopefully it will, in the end, have been worth it.

10

Ode to My Uterus

It all started on a summer day in 1980.  It was a week before my thirteenth birthday, and the day I had long-awaited finally arrived.  Just like Margaret in Are You There God?  It’s Me, Margaret, I laughed, I cried, I rejoiced.  The blood-stained panties signalled my entrance into womanhood.  Scrawny, awkward, terribly insecure, but womanhood all the same, dammit.

My uterus and I have had our ups and downs over the succeeding 35 years (35 years!!) – the downs really limited to a period of years when it failed to produce a baby despite my often tearful longing for motherhood (which failure turned out to not be my uterus’s at all, but my first husband’s).  By and large, my uterus has been very, very good to me.  I haven’t ever really minded all the periods, to be honest.  Not that they’ve been fun, but I’ve always seen them as a sign that everything is in working order, and it’s all made me feel very connected to my womanhood.  (You can stop reading here if this is nauseating you.)  And by gosh, this uterus of mine has grown seven amazing human beings.

Yep, we’ve been through a lot together.

And now, it’s time to say goodbye.

On Monday morning, I will be having a hysterectomy.  I am feeling a lot of feelings about it.  There is nothing wrong with my uterus, per se, it’s just that all the good work it’s done over the years has resulted in things … collapsing.  Which causes me to pee myself all the time.  So I’m having surgery Monday morning to remedy this, and hopefully improve my quality of life.  This is a whole pelvic reconstructive surgery; the doc is going to go in there and reinforce and hoist things back up to where they should be, and unfortunately, the old womb will get the heave-ho in order to ensure the best possible results.

On an interesting side note, remember all the hoopla about my heart last year before I had my mommy job?  How I had an abnormal EKG prior to my surgery, which led to all kinds of tests and a whole lot of worry and lost sleep?  And remember how all the tests showed that my heart was fine, but that I had a potassium deficiency and that the high blood pressure med I was on was not an ideal med to be on?  Well, I have been with a new doc for about a year now, who changed my bp med, and I’ve been taking a potassium supplement regularly since then (it’s still a mystery as to why I had a potassium deficiency).  I had to have an EKG a couple of weeks ago for this upcoming surgery, and I was nervous about it after what happened last year, but it was normal.  So, there you go.

I am, of course, getting more and more anxious about the surgery itself as the hours and minutes tick towards Monday morning.  The whole idea of being under general anesthesia – of having hours of my life completely lost to me – freaks me out.  I worry about the recovery (complete recovery takes six weeks; I have no idea how long I’ll feel like shit or what kind of pain to expect or for how long.  I have a friend who had this same surgery a number of years ago and she had a very rough time recovering).  I have to do a super fun cleanse tomorrow that I am kind of dreading.  And then there’s the whole idea of no longer having a uterus.  Not that it’s serving any purpose anymore, but it’s sort of bittersweet, you know?

Maybe I’ll have it bronzed.

 

8

People First Language and Identity: There’s More to the Conversation

I came across a link to this article in my FB newsfeed earlier this evening, and it’s got me thinking about a lot of things.

The first thing I want to say – and I’ve had this on my mind and have been wanting to write about it for some time – is that I’ve moved beyond feeling, and insisting to the world, that Down syndrome doesn’t define Finn.  You know what?  Down syndrome absolutely does define him.  Down syndrome and the particular ways it manifests in him shape so much about him: it shapes how he experiences the world, it shapes how the world experiences him, and to a very large extent – possibly to a greater extent than any other single thing – Down syndrome will influence and even dictate the path his life takes.  So, to continue to say that Down syndrome doesn’t define him is both an untruth and a disservice to him and to all people with Down syndrome.  It’s a disservice because it’s dismissive (by and large by those of us who do not have Down syndrome) of his experience and his identity, and moreover, it relegates Down syndrome to something that is negative and undesirable.  We would never insist that someone is not defined by something that we see as positive (he’s not defined by his wisdom; she isn’t defined by her compassion); we only say this about traits that we perceive as negative, and we say that a person isn’t defined by things we see as negative as a way to try to diminish their impact on the person in question, and really, their impact on us, because those things make us (the people who do not have those particular undesirable traits) uncomfortable.

I’ve begun talking to Finn about Down syndrome.  At this point, I really don’t think he has any understanding of what Down syndrome is, or even how it pertains to him, except that he is aware that he looks like other people with Ds; when he sees pictures of other kids with Ds, he’ll point to them and say “Finn!  That’s Finnian!”  In any case, I want to instill in him from this young age that he has Down syndrome, and that he should feel good about it.  He should own it, damn it.  I never want him to perceive Down syndrome as something negative, something he wishes he didn’t have.  I never want any of my kids to wish they weren’t who they are.

So, this leads me to the People First Language issue.  I admit that I’m wrestling with it.  Amy Sequenzia makes some excellent points in her article (if you didn’t click on the link above, go read it now: People First Language and Ableism), but I feel like some nuances are overlooked.

I still tend to use PFL and appreciate when others do – unless told otherwise by directly affected people (for instance, I am now very aware that autistic people prefer to be called “autistic” and not “people with autism”; I respect this, and therefore have made that change in the way I talk about autism) – where it pertains to Finn.  There are a few reasons for this: first of all, although I do not see Down syndrome as negative or undesirable, and I accept and even embrace that Down syndrome does, in fact, define him, I’d still like to think that our shared humanity is the thread that binds us all together, and what separates us from other beasts.  Maybe this is a Pollyanna-ish view, I don’t know.  In my mind, it’s not that I don’t want people to see his Down syndrome, or that I want to attempt to diminish its impact on him, it’s more like this: if you can see his humanity and see how his humanity relates to your humanity, then hopefully you can see him with compassion – not pity or disdain – and hopefully you can see that he is a whole, complex human being, and not a subhuman defect.

There is also the problem of word usage and how awkward it can be.  I’m talking about grammar, I guess.  See, while autism has an adjective equivalent (autistic), Down syndrome does not.  So when someone says, “He’s Downs,” or “the Downs kid,” it grates on the ear (at least mine) because “Downs” is not an adjective.  Plus, I guess I have somewhat of a problem with using the name of the guy who believed and promoted the notion that people with Down syndrome were actually an entirely different species – a sort of subhuman species that had manifested from some sort of reverse evolution – to identify my kid.  Yes, I still use the term “Down syndrome” to describe my son even though I’m not a huge fan of Dr. John Langdon Down’s ideas, but only because it’s the term that most people are familiar with.  If you say, “Trisomy-21,” most people have no idea what you’re talking about.

Anyhow, so there is no adjective version of Ds or T-21 that I’m aware of that would make “_______ person” sound right, from a linguistic standpoint.  Ds isn’t the only disability like this; what about cerebral palsy?  Would you say, “she’s cerebral palsy,” or “the cerebral palsy man”?  Or pretty much any “syndrome.”  How about Williams syndrome or Fragile X syndrome or Prader-Willi syndrome?  None of those have adjective equivalents, so it’s just awkward to use them as adjectives.

So, let’s just say “disabled” then.  I can get on board with that, except that it’s just such a negative word.  I mean, if you disable a smoke alarm or a machine or a bomb, you render it inoperable.  Are disabled people inoperable?  Do they no longer “work”?  No.  And if you think about it, all of the most common “dis” words in the English language are negative: dismember, disenfranchise, disrespect.  In fact, the dictionary defines the prefix dis as follows:

Screen Shot 2016-03-03 at 8.58.12 PMI wish we had a word that wasn’t itself so negative.  “Differently-abled” doesn’t work, either, because in its insistence on focusing on ability, it’s ableist.  So where does that leave us?  I don’t know.  I guess we’re stuck with “disabled” and all of its inaccurate and negative connotations.

Perhaps I’m splitting hairs over language and terminology, but I think all of these subtleties are worth contemplating.  A big part of the problem is that, yes, it’s very often – probably almost always – people who are not disabled who are deciding the language that gets used.  A lot of them, like me, are parents of children with one or another diagnosis – parents who do not themselves have those diagnoses.  A lot of us are thrust into this world of disability, and we’re trying very hard to be advocates for our children, and, yeah, we fuck up along the way.  Speaking for myself, having Finn was my first ever experience with disability.  When he was born, I didn’t know Down syndrome or disability from my ass.  God, some of the things I thought and said and felt in the beginning truly make me cringe now.  But there was never a single moment when I did not love my son fiercely, and all along I’ve tried to advocate for him and for the larger disability community.   I heard and read things over the years that resonated with me and made perfect sense to me – like People First Language.

Advocacy changes; the language that we accepted a few years ago is now offensive, so now we advocate for new language.  That language will one day also be offensive, because it will be misappropriated and turned into slurs, or it will take on new ableist connotations.  Hot button issues of today will be replaced with hot-button issues of tomorrow – perhaps issues that we can’t even conceive of today.

So, what I’m getting at is that it’s just not so cut and dried.  Being an advocate and a true ally is an ongoing, lifelong process of listening, reflection, introspection, contemplation, and growth.

 

3

Miscellany

Hello there.  I’ve missed you all, too.  Life is busier and I am more frazzled than ever.  Here’s a rundown on the newsworthy and the not newsworthy:

Homeschooling has become pretty much a full-time job.  In fact, Michael even said to me recently, “Wow, it’s like you have a full-time job.”  (Because, you know, I was living a cushy life of leisure before I started homeschooling.)  It’s not that our school days last all that long; in fact, we still almost always finish up by lunch time.  It’s that I spend so much time thinking about it and worrying about it and reading about it and trying to figure it out.

I’ve become a lot more relaxed about curriculum and lessons – I wouldn’t say that we’re unschooling exactly, but probably a hybrid of unschooling and relaxed schooling –  and the girls are becoming more independent and self-directed in their learning, although Lilah still needs quite a bit of help and input, and the program we’re using to address her dyslexia involves formal daily lessons and exercises.  For the most part, the girls and I talk about goals, we have a loose schedule hanging on the refrigerator which they consult, and they pretty much run with it, and I feel like my role is more and more of a guide or consultant.  And sometimes a moderator, because let’s be honest: put a handful of kids together day after day and they’re bound to get on each other’s nerves, antagonize each other, and vie for attention. But that’s just siblings, homeschooling or not.  Also, Annabelle continues to challenge my patience and stamina, as she has since toddlerhood.  She’s the clown, the goof ball, and the least cooperative in all things.  She and I butt heads a lot, which saddens me.  Sometimes I see my relationship with her fulfilling my worst fears about having a daughter – but that’s fodder for a whole other post.

I’m still trying to find a groove with Finn.  I don’t feel that unschooling can really work for him, because he is absolutely not self-directed.  He would be content to play on his iPad all day, every day, maybe for the rest of his life.  He’s curious about the world around him to a degree, but he has no innate interest in or motivation to learn to read or count or write or any of that boring stuff, nor does he have any concept of the value of those things, so educating him is a whole different ball game than educating his typically developing siblings.  I have to be very deliberate in teaching him, and I have to find ways to do it that are interesting and palatable to him, and right now I really have my work cut out for me because I think the last few months of school really tweaked him and turned him off to the whole idea of sitting down and learning.  So we’re taking it slow, and sometimes I feel a little panicked because I feel like we have so much lost ground to make up, and so much new ground to cover.  So I have to stop periodically and take a deep breath and remind myself that all we have is time, and there is nobody and nothing we need to catch up to.I’ve taken up knitting.  This isn’t news if you follow me on Instagram or Facebook.  Anyway, I’ve wanted to learn to knit for years and years (and I still want and plan to learn to crochet), and I finally bought some yarn and knitting needles and an instructional book for beginners (which didn’t help much; I find that I learn much better by watching, so YouTube videos have been awesome), and began with a scarf for myself in my favorite color:IMG_1226knits

Since then I’ve knitted a couple more scarves and hats, but I want to move on to some more complicated projects.  I love it, I really do.  It’s very Zen for me.  After the kids are in bed, I climb into bed and knit while I listen to a book on Audible.  A girlfriend (who is a longtime knitter) and I have started getting together at each other’s houses on Friday nights and knitting together over drinks.

Michael was gone for most of last week, in Portland taking the Oregon bar exam.  That’s right folks – this whole moving to Oregon thing may really happen.  It’s exciting and scary as shit.  But first things first: bar results will come out in a few weeks.

I am having a hysterectomy in less than a month.  I’m sure, being the over-sharer that I am, that I’ll write more about it as it gets closer, but for now, I’m having a lot of mixed emotions about it.  It’s all part of improving my quality of life (I pee myself constantly.  I’ve had seven babies, yo.  It takes a toll on a body), and that part I’m looking forward to, but gosh darn it, I’m pretty attached to my womb.  We’ve been through a lot together.

There are other topics flittering around in my head that I want to put words to here sometime soon, but for now, this is the nitty-gritty.

Until next time …

13

Footnote

As a footnote to Finn’s school saga, I contacted his former teacher (and cc’d the principal) earlier this week, inquiring about Finn’s classwork.  Nothing had ever been sent home with him – not a single writing assignment, coloring page, or art project.  Nothing.  I had been aware of it as the weeks and months wore on, but I guess somewhere in the back of my mind I kept expecting a big pile of stuff to come home with him.  But nothing ever did – not even when I officially requested his cumulative student record when I pulled him from school a couple of weeks ago.  So I sent an email earlier this week briefly explaining that nothing had ever come home with him and asking that any and all of his schoolwork be gathered together and left in the front office for me to pick up.  It took twenty-four hours to receive a response, and it was from the principal and not the teacher.  It informed me that Finn’s classwork was ready to be picked up in the front office.

I picked it up yesterday.  There was a fair amount of stuff – not nearly as much as you would expect from half a school year from a “typical” first-grader, but a fair amount.  Stuff dating back to the beginning of the school year.  A pumpkin art project obviously from October.

And this little gem, with my annotations:

School Rules

I’ll be honest: I don’t much care about the actual contents; it’s water under the bridge at this point (and most of it was worksheets that his aide had clearly had a big hand in doing).  It was the principle of it: why the fuck hadn’t his work been being sent home with him all along?  Why wasn’t he treated like a student instead of a problem?  I wanted to force their hand and get an explanation.

None, of course, was forthcoming.  I responded to the principal’s email asking her why Finn’s work had not been sent home at regular intervals all along, and asking if they ever had any intention of making sure we received his work, since it took me pointedly asking for it two weeks after he was disenrolled in order to actually get anything.  No response has been forthcoming, and I have no doubt that none will.

So, I’d just like to say to anyone who has ever hassled me for not falling all over Teacher Appreciation Week, for not buying into the whole Teachers Are Martyrs and Saints mindset: piss off.  We’ve had our share of negative, and even downright painful, teacher experiences.  Some teachers are truly wonderful – we’ve had those, too.  And some are damaging, or at least complicit in a system that is damaging.

So, I wash my hands of it.  I know that I need to find a way to let go of my anger and disappointment and move on, and do the things for my kids that school couldn’t or wouldn’t.

8

When Inclusion Doesn’t Work

I’ve taken this whole thing with pulling Finn from school much harder than I anticipated I would.  I spent the better part of last week in a funk, feeling very much like I was grieving.  This isn’t how it was supposed to turn out, and I am bitterly disappointed.  More than any of my other kids, I really wanted school to work for Finn because I believed that the seeds of inclusion for life in the larger community would be planted at school.  While my feelings about conventional school have changed greatly over the last few years, the fact remains that most kids spend their formative years in school, and the people Finn will be adults with are people who are children in school now.

One of the things that bothers me the most is that now that Finn is no longer in school, I think in many people’s minds he will just go down in the annals of “See?  Inclusion Doesn’t Work.  Kids With Special Needs Don’t Belong in Regular School With Regular Kids.”  Even the handful of moms whose kids went to school with Finn whom I’ve reached out to, just to let them know that Finn won’t be at school anymore – I know I’m assuming a lot here, but I have little doubt that they probably are of the mind “Well, it’s unfortunate, but not surprising.”  In other words, I think most people still don’t expect “special” kids to be in regular classrooms.

I wanted to blaze trails – or if not that, then at least make things easier for the next kid with an intellectual disability who comes along to this school in this district and who demands his or her rightful place in the general population.  But now, Finn’s case will just be more useful for the district and the school to resist inclusion.  They can continue to pat themselves on the back for having that really great program for the autistic kids – you know, “Project Success,” where they stick the kids with autism in a portable classroom out on the back forty – as far away from the hub of the school as you can get (true story, this).

Here’s what I want people to know: Finn’s inclusion didn’t work because the system failed him.  Because the adults who run this racket failed him.  The school district failed him, the school failed him, and yes, his teacher failed him.  And I will go so far as to say with conviction that in the vast majority of cases of inclusion not working, it is the failure of the system, not the child.

I am resentful that from the start, when Finn transitioned to the school district at age 3, the school district did everything possible to throw up roadblocks and make it as miserable an experience as possible.  I am angry over the thousands of dollars we spent on legal fees to get Finn’s basic legal rights honored by the school district, over the countless hours of meetings, of the volumes of letters and emails that went back and forth between us and the school district, of the fucking games the school district played including outright lying to us.  I am sick over the fact that in two and a half school years in public school, less than half of that was a positive experience.  TK sucked, mainly because the teacher didn’t know what to do with him and largely saw him as a problem.  Kindergarten was a dream, because the teacher believed in Finn, believed in his value as a human being, and was committed to everything inclusion means.  And first grade sucked, because again, Finn got a teacher who didn’t know what to do with him and largely saw him as a problem.

In one of the last communications I got from Finn’s teacher, she complained to me that “He has been playing with his long sleeve shirts a lot by pulling his arms out of his sleeves and lifting his shirt up.”  This, of course, was not the only problematic behavior he exhibited at school, but seriously, why was this even worth mentioning?  How many other first-grade boys are engaging in obnoxious or annoying behaviors like that?  And do their parents get to hear about it?  Was it hurting anyone?  Perhaps it was a distraction to the other kids.  I ask again: how many other first-graders are engaging in obnoxious or annoying or distracting behavior?  But for Finn, everything was scrutinized and deemed a problem.  This was a clear illustration of the teacher expecting Finn to accommodate everyone else rather than being afforded simple accommodations like overlooking odd behaviors that weren’t hurting anyone.

Please, spare me the sad song about how hard teachers have it.  You know what’s hard?  Being a kid with a disability in an ableist world.  Being a kid with a disability in an ableist school, in a school that would rather see you safely stowed away in a segregated classroom where you won’t bother anyone.  Being a kid with a disability in a classroom with a teacher who sees you as a problem to contend with.  That’s what’s fucking hard.

We could have stuck it out.  We could have kept fighting the good fight instead of giving up.  But the thing was that all I saw ahead of us were years and years of this shit.  Years and years of meetings and reports and paperwork and fighting with school districts and schools and teachers.  And maybe having a good year sprinkled here and there, but mostly the constant struggle of trying to get his needs met, trying to make people get it.  And meanwhile, his childhood is going by, and it’s time that will never be gotten back.

And I just couldn’t do it anymore.

And, yeah, I’m bitter.

But we pick ourselves up, and move forward.  We adjust to a new plan.

For the time being, I’m keeping homeschooling very low-key with Finn.  In truth, he still doesn’t understand that he’s not going back to school.  He still asks about it.  It was part of his routine, what he was used to.  And with the upheaval of him getting so sick and being in the hospital the first week he was out of school, we’ve barely dipped our toes into anything schoolish.  He has no IEP now, nor any ISP (Individual Service Plan, whereby homeschooled children with disabilities can still receive certain services, like speech therapy, etc., through the school district), which means we have no set educational goals, and he won’t receive any therapies.  I am completely okay with that; this was our choice.  I’ve never been big on therapies anyway, and I’m washing my hands of this school district (Joey will soon finish eighth grade and that will be that).  I filed a PSA (Private School Affidavit) with the state this school year, so I’m homeschooling the kids completely independently and autonomously – exactly how I want it, thank you very much.  We’ll figure it out.  I want to focus on the basics with Finn for now – reading, printing, counting – and we’ll take it from there.  Mostly, I want to build up his confidence and self-esteem, and undo the damage that school did to him this year.

Field trip to the arboretum

Field trip to the arboretum

Letter sent disenrolling Finn from school:

Screen Shot 2016-02-08 at 10.33.31 PMScreen Shot 2016-02-08 at 10.33.46 PM

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