A Code For Pirates

Life is a little odd lately. Many of you noticed that I haven't been around much.  I've been battling a yet-to be diagnosed illness off and on for the greater part of September. Not only have I missed a week or two of blogging, but I've also missed work and landed in my own Emergency department twice.  Once overnight.  Once in the middle of a shift.  It's not pleasant.

Despite all the tests, I have no idea what this illness is.  I'm sure that stress plays a role here;  things have not let up on any front in that regard.  There are days, sadly, that I seemingly go from skirmish to skirmish as I deal with the issues in my path;  a forgotten appointment here, a malfunctioning appliance there.  The realization that we will soon need a new roof.  Life, all of it.  I've had many an hour to think about things since this has started...  It's true what they say, that ability is not forever.  It is indeed a fleeting thing:  accidents,   illness.  These things can easily change one's life in an instant.  As I wait for the next round of tests and the answers that they may or may not bring, I am dutifully taking my medication and appreciating what my life has given me thus far.

Time continues to march on with Team Logan.  The first week of September saw Quinn's somewhat anxious return to school.  On one hand he was eager to return to learning and structure, but on the other he was still a little nervous, given the bullying he had experienced at the end of last year and in day camp over the summer.  Maybe this year will be different, I thought as I walked back to the van the first day.

Flash forward to September 18, the night before "International Talk Like a Pirate Day".  It won't surprise you that this is a thing in our house.  Before bed, as we were watching some television, I was painting my nails black.  Quinn, who loves to watch me paint my nails and will wear it occasionally, asked if he could have his nails done.  "For pirate day" he said. 

I have to admit that I froze here for a second.  Not because he asked, not because he wanted to wear it, but because I thought of the bullying that he had already experienced.  The connection between nail polish and pirates didn't surprise me, as actors who have played pirates have sported painted nails from time to time (and lets face it, I have more than a few skull adornments lying around, including the ones I was about to stick on my fingers).  It was also Mommy time, a special little thing that he and I could do.  What came out of my mouth next surprised me, because it totally was geared towards damage control and had nothing to do with his desires for self expression.

"How about just the pinkies?", I asked, citing a bunch of stars, including Ozzy, Steven Tyler, Keith Richards who have rocked that look.  "Sure" he said, holding out his hands. 

The next morning, dressed in his pirate shirt, he went to school.  "Arrrrrr!" he said, flashing me the horns and showing off his nails.  "Hurry up!"  I countered, kissing his forehead "Love you, off with ye".

The boy who came home was not as exuberant.

His feet dragged, his face showed that sad weariness that I hoped to never see again.  What's worse, his polish had been scratched off, hurriedly, as his cuticles were red and there was black under his other nails. The ignorance from the other kids had started the moment he got on the bus and ended when he got off.  Some called him a liar, told him there was no such thing as "Pirate day" and could not understand that his nails were not a statement of gender or identification, but rather, one of art. 

He went off to play and I got angry.  Not the angry that I get accused of all the time for differentiating myself from a complacent door mat, or the "filled with hate" I'm supposed to be when I point out ableism, but an actual, all consuming, honest to goodness blind rage.  I swore like a pirate hooker into the phone at my BFF while furiously mashing apples into sauce over a hot stove.

I was at the canning stage and muttering to myself when Quinn came back into the kitchen to talk some more.  With a great deal of insight, he told me how not everyone had made fun of him but it did seem that way at times.  What was worse, he explained to me, were the people that were trying to help him take the polish off.  I knew what he was trying to say, that they were helping him "to be like everyone else".  How the people that claimed to accept him would still rather he be someone else.   It hurt me, that at seven years of age, my son was experiencing this.  He asked me "what do you want me to do?"

"Honey", I answered, "if you want to wear nail polish, wear nail polish.  If you don't, that's cool too."

I repainted his pinkies, by request, right then and there.  I added his index fingers and his thumbs... and painted the two middle fingers clear.  He flashed me an "I love you" sign as a way of thank you.  The next morning, also by request, we removed the polish as that was also his choice (and we made sure he was not doing it out of fear of more taunts).  I made sure that his teacher knew we were coming early for meet-the-teacher night so that we could discuss this.  To her credit, she made all the appropriate noises, but even she was a little taken aback when he told her that yes, he had told her... he had written about it in his journal and she had missed it.  I made sure she knew that we knew that Quinn is probably smarter than most of his classmates, that he is kind and artistic, that he is quirky... and all of these things make him a target.  I told her how the kids at camp physically assaulted and humiliated him.  I told her how one of the kids that bullied him at the end of last year is sitting directly across from him at his table in the classroom.  Patiently, kindly, firmly and without raising my voice I let her know that he is my son. That I love him, as is, dearly... and I will be damned if he is going to end up a statistic or one of the kids that come through my Mental Health ER. 

She agreed.

We drew up our plan, all of us at that time, Teacher, Mother, Father, Child.  We created a circle, a crew, one with a mission.  Everyone within is told if there is a problem, if Quinn encounters more of the same kind of treatment.  We all have a responsibility in this crew;  ours is listening to each other, including his teacher. His is telling us, especially if he can't manage it on his own.  We will act, ensuring that his needs are met emotionally and scholastically.  In nursing, it would be called a "circle of care".  In Team Logan's world, it is a code for pirates.  However you choose to look at it, the consequences of breaking the code are no less dire.

This is the first engagement of many, of this I have no doubt.  Then, in a few years, both Wyatt and Zoe will be going to school.  There will be IEP's.  There will be more circles, more crews and a lot more potential battles.  There will be high-falutin' adventure too.  But still, we must keep one eye out for changing winds as we sail these unknown waters.  We will continue to navigate this life as we always do, with the wind in our hair, the colours high, our crew at our back, giving and asking no quarter. 

Come what may.  We'll be ready.

"Every normal man must be tempted at times to spit on his hands, hoist the black flag, and begin to slit throats." - H. L. Mencken

The flag of Calico Jack Rackham, who sailed with his love Anne Bonney (and her love Mary Read)

Parley

"Damnation seize my soul if I give you quarters, or take any from you." 

-Edward "Blackbeard" Teach

There is a lot of talking in our house.  It may not seem that way to some, but every single member of my household has a lot to say.  Although BK (before kids) my husband and I would often spend entire days marooned in a book, we would come together and have great discussions about life, the universe and everything (usually after killing a couple bottles of wine).  Our kids seemed to have picked up this torch... which is both a good and bad thing.  If either of us actually have the capacity to finish a thought these days without becoming distracted or frantically searching for a noun to keep our statements from including more than one instance of the word "thing", we're not going be heard anyway.

Take Wyatt for example.  He hasn't looked back after his surgery.  He is still pulling himself up to a stand on every handy surface and pant leg and then learning to cruise around the furniture.  He's a pro in his crib, where he can quickly walk down the length with the barest of hand holds.  During all of this, he is chattering non stop.  He was always a vocal baby, but now the level of communication has skyrocketed after his surgery.  Oh sure, we're still teaching him how to sign, but that is having mixed results.  He knows a lot more signs than he will use and at times I think he relishes this.  The sign for "more" for example, in his mind, is perfectly appropriate when the fireworks are over.  When Mommy is asking if he would like more to eat? No. Not unless dessert or some other particularly tasty morsel is involved and only if he initiates it.  One night not too long ago, I was really pushing the issue (and probably being more than a little patronizing).  "More Wyatt?" I asked, tapping the sign out. "Do you want MORE?" (another sign) while ignoring his attempts to communicate in other ways. Finally after giving me a good long stare he took his right hand, grabbed his bottom jaw and opened his mouth as far as he could.  With his left, he made pointy jabby motions towards his mouth as if to say "PUT THE DAMMED FOOD IN HERE WOMAN!  What don't you understand?!"

So I did.  Can't argue with that.

He's also coming up with his own signs for things.  You will remember that he decided that differentiating between "Daddy" and "Mommy" was pointless, so he would tap the crown of his head and made "parent" (which, incidentally, looks like this traditionally).  His latest is creating a sign for "tickle", where he tents his fingers like Mr. Burns and wiggles them instead of the traditional sign where he would tickle his chin.  The amount of vocalizations and different sounds that he is trying out at the moment is also a little astounding;  I was on my way upstairs to have my nap before my first night shift this week and he made kissy noises by making a fish face.  You can see that he prefers to express himself verbally and I can understand why;  we don't use sign language to talk to each other so why the heck should he?

Our Zoe girl, at the risk of sounding like a gushing parent, is just adorable.  Even when she's being rotten, she's completely edible, which makes being mad at her almost impossible.  She speaks with a lisp and frequently substitutes consonants around.  Her vocabulary is increasing by the day and will occasionally bust out a turn of phrase that has you a) wondering where she heard it and b) laughing hysterically at her timing. When not climbing every available surface, she is charming you with her knowledge on such diverse subjects as farm animals, pirates and cowboys. We were recently at a birthday party and while the other girls were trying to stay clean and out of the rain in their pretty dresses, she was soaked to the skin, her pants solid mud to the knees as she merrily played pirate.  She's recently taken to singing all the time too, which is fun to watch.  She may not know the lyrics, or the tune but she will do her very best to hum along and throw in a word here and there.  She's even starting to show a little musical preference, as I've found her singing along to Stevie Nicks, Heart and Joni Mitchell. (That's my girl!)  I'm not so sure about the Steely Dan, however.

We've had a different kind of conversation with Quinn lately and quite honestly, it's one that I wish didn't have to happen. We've talked about serious things in the past, like prejudice and strangers and whatnot, but none of these have threatened to steal the sunshine out of my son's eyes.  This one has.  We had to talk Quinn about bullying. 

There was a hint of this thing earlier as during the last week of school, I was thumbing through his agenda and found that someone else had scrawled "Quinn is a fatty" and a few other things.  Right now the boy looks like a bag of antlers, so I wasn't quite sure what all that was about.  He mentioned that a few girls in his class didn't like him for one reason or another and quickly changed the subject.  I made a mental note to keep an eye out for further issues in September and we left it alone.  Flash forward to the first week of August when I broached the subject of him going to day camp for another two weeks (he had already gone for two weeks in July) and what camp would he prefer to go to?  He answered my questions by stating that he wasn't sure where wanted to go to, if at all.  I pressed the issue by bringing up the subject of attending the co-ed "Robin Hood" style camp that a few of his friends were going to--now that he's gotten over his fear of accidentally skewering random picnickers during archery practice--and he dropped his eyes and became rather squirmy.  It took us a bit to get the full story out of him, but as it turns out, he was being bullied at camp as well.  I won't get into the exact details of what happened as it is not my story to tell here.  Rest assured that if I had known at the time why he was coming home so dirty, with downcast eyes that he passed off as "tired", I would have played things a lot different (and possibly consulted our local police).  Now that the week was over and that group of boys dispersed, we were powerless to do much except talk to his next leader.  It filled me with rage and shattered my heart at the same time.  It had played out like a classical example; this had not started with physical violence originally but with verbal taunts, the most notably being "gay".  It would start on the bus in the morning, continue all day and not end until he came home.  It did not stay verbal for very long, either.

Last year, when he first attended day camp, he was six and in groups of 5,6, and 7 year olds.  This particular week, he was in a group of 7,8 and 9 year olds and now the youngest in a radically different dynamic.  At the time, Quinn did not know what they meant by calling him gay, other than they were saying something to him that was meant to be hurtful.  He said it they called him this due to his liking hanging out with girls (?!) and for wearing his favorite pink shirt, the one that I tie dyed for him for anti-bullying day two years ago.  This soon escalated into tripping and shoving.  One afternoon, when this group made sure that his neighbourhood friend was occupied on the rock wall with the leader, they found their moment and physically attacked and humiliated him, for being "gay".

I don't know if my son is gay or not.  He's seven.  If he is, I will be Grand Marshall Mom at Pride.  Regardless, he is a gifted, kind, generous boy who spent the better part of a year holding an anxious girl's hand at recess to make her feel better and playing "Bob Hope" to a classroom of drowsy students to keep them from completely tuning out, long after he should have done just that. 

He is artistic.  He is musical.  He is a scientist. He is my son and is only seven years old... and some shithead bully kids with even shittier homophobic bully parents, decided to work out their rage about their shitty, angry lives on him.

My husband and I sat down with him.  As my heart physically ached, we were supportive and listened to what he had to say.  We then took turns talking to him in little sessions over the course of a week.  We talked about bullies, we talked about why they do what they do.  We explained that this was learned behaviour and it was never acceptable.  We talked about how yes, you do need to tell someone and quickly, but that also includes us, not just a teacher or leader.  We role played with him a bit, showing him how to spar verbally and how to end such a conversation while still standing up for himself.  We also talked to him about what being gay was, how that is only an insult if you are hateful. We also told him that, as is often the case with bullies, those boys were so ignorant that they didn't even know what the word they were using meant.

We also talked to him about physically standing up for himself and when that was appropriate.  I agonized over this one as I do not wish my son to become a bully any more than I want him to become a suicide or self harming statistic. The reality is, he may have to push back, he may have to punch some kid in the face as a last resort.  During all of our talks, we stressed over and over and OVER to him that we would ALWAYS love him and would ALWAYS listen to him.  We would always back his play as well, regardless of what anyone else would try to tell him. 

There is a happy-ish ending to this story however.  He's back at day camp this week with a whole new group of kids, in a group that is 6 and 7 year olds and those older boys are long gone.  It is "Pirate Week" there.  He is coming home with the requisite amount of dirt for a boy his age and is happy and smiling again.  He has agreed to go to the co-ed camp for his last week there, now that he is sure that being around girls won't "make him gay".  His self esteem is much improved and he has been bolstered with his new knowledge.  School starts the day after Labour Day here, so it is just a few weeks before we see what this year will bring.  Hopefully by then this ball of fear in my chest will disappear.  I wish I could shake the feeling that it is here to stay.  This particular discourse will not end here, as there never seems to be an end to the bully supply. 

Between work and my online efforts and my family, it seems some days that the dialogue never ends.  It's no wonder that I sometimes look forward to the kids' bed time or quickly switch the squawking talk-radio  that my husband prefers to a music station.  It's a lot for me to process at times.  But, we have some great things in the wind.  The conversation is just getting started here;  as time will go on we will talk about a lot of things that will be difficult.  There will be a lot of teenage angst, there will be boyfriends and girlfriends and all sorts of life events to explore.  Right now I'll revel in my daughter's "Wook!  Pie-rats!  Yaaar Matey!  Ahoy dere!" and Wyatt's backing "Yaaaaa!" and Quinn's resulting eye-roll.  There is never a dull moment with this bunch.  We'll be sayin' our piece, right and plain, for manys a long day to come.  Parley or parlez as it was originally, isn't just a guideline here.  It's a way of life. 

Yo ho.

None asked, none given.

A Step Backwards for Down syndrome Advocacy

I've been out of the loop for a bit.  As most of you know, recently my son had open heart surgery to repair his AVSD.  I haven't been around in the online scene as of late which has been troubling me.

What's troubled me more is a current shift in thinking, especially when it comes to the events following the death of Ethan Saylor.  I was saddened to come back from my hospital hiatus to see that not only some advocates, but even some of the major organizations are pushing towards "Down syndrome specific training" for police and first responders.

I'm not going to beat around the bush: I think this is really a misguided application of energy.  One in fact, that may undo years of hard won advances with Down syndrome advocacy.  There are a few reasons for this, some of which I'm sure haven't been considered by those who are pushing for it.

Firstly, who decides what subjects are taught or what aspects of Down syndrome will be highlighted in this training?  What does this proposed training involve?  Not too long ago, the community was rocked by a supposed "nursing" site posting an old image caricature of an infant with Down syndrome.  Many of the "conditions" presented were irrelevant, occur in the greater population at random and have no bearing on quality of life.  What will affect a person with DS life are things like heart disease, which the general population also has and in much greater numbers.  There are umpteen studies showing that positional asphyxiation is a reality.  Law enforcement and any person using restraint (including us psych folk) are well aware of this.  Every single document, every single video that I have come across in my search clearly outlines the danger of positional asphyxiation.  A person with DS is in danger of dying when restrained face down on the ground, yes.  So is everyone else.  Except in Maryland, apparently.  The reality is, these deputies knew the dangers and chose to ignore them, or quite frankly, simply didn't care.

Secondly, who is qualified to teach 'Down syndrome specific training'?  Physicians?  Lawyers?  Other law enforcement?  The National "Advocacy" Organizations?  Training also needs constant updating and re-certification.  Who designs these courses, who are the supposed experts here?   Who accredits them?  From what sources does their information come from?  If you remove the money from the equation (as people will have to be paid to come up with this course material, train the target audience, maintain the certification and audit those with the training), who really benefits from this training?  The officers, who will look at it as one more thing to endure to get their superiors off their case for one more year?  With that in mind, will these strategies really get incorporated into everyday use?

Thirdly, and most importantly is the glaringly obvious thing that people are missing:

By advocating for Down syndrome specific training, you are further marginalizing those with DS as the "other", as "different" and setting them outside the rest of society.

By stating that people with DS--a population that is as diverse as the greater population it is derived from in the first place--need "special considerations" when being talked to by a police officer, EMS, Firefighter or whoever else you want to extend such "training" to, you are predetermining.  You are profiling, you are prejudging.  People do not fit into neat little boxes.  For example, you cannot deal with every mentally ill person that you encounter identically as there is a pantheon of symptoms and an equal amount of ways that communication can break down. The differences are just as numerous and the analogy holds when you are looking at people with developmental delays.  Every single person is different;  in terms of DS, the extra chromosome can express itself in a multitude of ways.  Some will have sensory issues, most won't.  Most will have heart issues, some won't.  Making blanket statements about anyone, be they developmentally delayed, mentally ill, of a specific ethnicity, or any other difference that sets "them" apart from "us", is dangerous, marginalizing and opens the door for so much abuse. Relying on gross generalizations in times of crisis is poor preparation and serves and protects no one.

I have a great respect for all law enforcement, not just the officers that I cross paths with in my line of work.  I refuse to see police as mindless killing machines who need to be distinctly told not to do something so that all of us can stay safe. The ones in my community certainly aren't, at least not any more.  Back in the bad old days... well, I could tell you stories growing up in this region.  There is a certain level of education that is required to get in now.  There is a certain level of community involvement that is required, you have to be a very well rounded person to be considered, to represent a diverse population safely and with compassion.  That isn't something that is taught or possibly can be taught, it is recruited for.

We need real world solutions, not special training, to keep people like my son from dying at the hands of those who are sworn to serve and protect him and the rest of my family.

With that in mind, allow me to humbly offer the following:

1)  Recognize that a Sheriff is an elected official not simply the "top cop", who can quite easily become as corrupted as any other elected official.  Know your candidates and find out their track record prior to them obtaining office.  Cast your votes accordingly.

2)  Abolish "moonlighting".  The deputies who were responsible for the death of Ethan Saylor were moonlighting as mall security, a job that (if our friends in mall security will forgive me) is well below their level of training.

Let me give you an example.  As an RN, I am not allowed to work as a Personal Support Worker if I find myself strapped for cash.  There is a reason for that:  I have a certain skill set, a scope of practice and a specific license.  If I were able to take a job below that scope of practice, yet in the same field, it would blur a lot of lines.  If I was tending to an elderly client who suddenly developed symptoms that I recognized because I was an RN, I couldn't pretend it wasn't happening because "a PSW wouldn't know that".  By the same token, if I used interventions that I know from being an RN, I would not be able to legally justify/use them due to my current employment as a PSW.  The lines are too blurry, the jurisdictions too different.  I can't be one thing and pretend not to be a couple days a week to work a job with a lower skill set, if only to protect my license and my main livelihood.  You shouldn't have active paramilitary personnel working as mall security either.  When the three men were called to the scene, they were acting as mall security.  Somewhere in there, they decided they were deputies again.  Regardless, they sure became deputies again (and invoked all rights and privileges as such) once Ethan was dead.

If I need a little extra cash, I pick up overtime.  The police in my area work along the same lines.  There are also a lot of paid duty opportunities for police as well.  This is why here, you find uniformed officers at ball games, outside construction sites, doing patient watches in hospitals and at the liquor store at Christmas.  During such, they are expected to fulfill the responsibilities that their uniform dictates.  If malls and whatnot expect a certain level of security, they pay for it.  Offer the police a little respect and pay them properly to perform their duties as police officers.  They earned it. Allowing active, trained officers to take lesser skilled jobs in a related field is simply asking for trouble and opens the door for tragedy, as it did in Maryland.

3)  Recognize that compassion cannot be taught or encouraged in those that aren't receptive.  Recruit accordingly.  There are some that go into policing that are angry, have deep set prejudices and too easily cross the line.  We all know stories of this, of cops that take it too far.  Take this guy or this guy, or this guy.  But, for every horror story, I'm betting there are 10 great officers (both men and women) who actually do care about the community they serve.  You need more of them in the field, not just in front of the camera when the politicians feel it's appropriate.  It is possible to have a general sensitivity towards various cultures and groups and still be able to control a situation (and ultimately ones self).  It's been put forth by one blogger that we live an ugly world and if there was more compassion we would not need police or even soldiers as there would be no war.  I'm not talking about achieving Utopia here; sometimes force is a necessary evil.  However, I guess I'm a bit spoiled coming from Canada.  We don't have legions and legions of soldiers.  The ones we do have are respected across the globe for their compassion and known as "The World's Peacekeepers".  It is possible to be both.  The police in my community at least, certainly reflect this.

The idea of "Down syndrome specific training" is ridiculous, insulting and might very well put our advocacy efforts back decades.  You cannot train for such a diverse population, as people with Down syndrome exist in every ethnic, socioeconomic and religious background, not just white, middle class, Christian ones.   Those are the factors that dictate how a person with Down syndrome receives care, is viewed in the community, is treated in their own family and even how the person themselves view law enforcement and first responders.  It is these factors that will shape how a person with Down syndrome will react in a a given situation, not their chromosomes. The idea that my son, who will grow up respecting law enforcement--just like Ethan did--could die of  "Down syndrome" and "heart issues" at the hands of law enforcement--just like Ethan did--shakes me to the core. There are a lot of comparisons that I cannot help to make between Ethan and Wyatt; Ethan's Mom is a well known DS advocate too.  The idea that sweeping generalizations, by the medical community and by law enforcement, may very well rule my son's future life and death, makes me angry.  We cannot hope to change the public perception of people with DS to one of complete inclusion by making people with DS the "other" to the very people that are supposed to take care of them.  There is no magic list of "things that you need to know when 'dealing' with a developmentally delayed person" other than you are talking to a human being with thoughts, feelings, desires and needs.

Just like everyone else.  I cannot stress that enough it seems; that particular point cannot be lost.

Factoid Friday: Special Needs Bullying (31 for 21, Day 19)

Sadly, bullying is a reality in our schools and a hot button topic as of late.  Even sadder, those with special needs, especially the learning disabled are routinely targeted.

Here are some fast facts about bullying, specifically aimed towards those with special needs:

  

• 60 percent of differently abled students report being bullied compared to 25 percent of their typically abled peers
• Only 10 studies have been performed in the US regarding the relationship between special needs and bullying.
• Of these 10 studies, all have concluded that differently abled students are 2 to three times more likely to be bullied than their typical peers.
• Along with this, the nature of the bullying appeared to be more chronic and had a direct relationship with their disability.
• Children with special needs often have a lower social standing which may contribute to frequent bullying.
• Children with visible disabilities, such as Down syndrome or cerebral palsy have a higher incidence of being called names or aggressively excluded from social activities.
• Children with learning disabilities, autism spectrum disorders and ADD or ADHD exhibit significantly more victimization than even their peers with mental or behavioural disorders
• Thirty percent of parents of a 12 to 17 year old fear bullying over kidnapping, domestic terrorism, car accidents, or suicide.
• Twenty seven percent of parents of a child under twelve say that they fear bullying slightly less than kidnapping.

Also for consideration:

• Twenty percent of total teens report having been the victim of cyber bullying.  More research is needed into the relationship between cyber bullying and teens with special needs as the average of internet usage is higher with this group (due to accessibility, etc).
• Social and Emotional Learning curriculum (SEL) where students are are assisted in learning skills to help them develop interpersonal relationships, cope with school and schoolwork and develop personally as an individual have shown to decrease the overall incidences of bullying (both of typical and non-typical students) while at the same time improving overall grade scores (by approximately 11%).

And that's the facts, Jack.  Happy Friday. 

"Bullying and Ostracism Experiences in Children with Special Health Care Needs." Journal of Developmental & Behavioral Pediatrics 31.1 (2010): 1-8

"Walk a Mile in Their Shoes: Bullying and the Child With Special Needs." AbilityPath.Org. Community Gatepath, Web. <http://www.gatepath.org/>.