Monday, September 30, 2013

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)

Friday, September 13, 2013

Reflective Practice

It was raining when I started to write this.  Which was welcome, as 35 degree weather is not proper for Southern Ontario.  Especially in September.  We've needed the rain and the last growing days of the garden will welcome it and more.

The garden is not alone in welcoming this storm;  the rain was soothing to my frayed nerves and the light show seemed to pick up my spirits.  The last little while has seen a few things that have made me reflect... on life, on my job, on my advocacy and really, everything down to these words you see here.

I've been trying to make sense of a lot of things in the last little while, trying to incorporate new ideas, trying to understand the motivations behind certain things.  It's been hard.  Too much has happened, too much stimulation, too much, too much...  Back, what seems like a million years ago, I had an older Italian lady as a patient.  I sat down next to her one morning and after the usual pleasantries asked how she was feeling.  Without missing a beat, her eyes bore into mine and she half laughed.  "How I feel?  Girlie, I canna stand, I canna sit still and my headsa goin' aroun' like a chick-a-loan!"

I know how she feels.

Although not completely cyclonic, my thoughts are pretty all over the place.  I've written no less than three posts this week in an effort to get my shit together;  they cover all flavours of outrage and pain and psychiatric analysis... and I have not published a single one. It's been hard.  There's been too much.  I'm fine... well, aside from a gallbladder that hates me, but the family is fine.  But, there's been a little shakeup, a little wakeup... I've been doing some serious self reflection.  It's a side effect of being a nurse, a pre-requisite of renewing our license and really a valuable tool for everyday life as well.

All the stereotypes have come out to play in the wake of the recent murder attempt of Issy Stapleton.  I hate the intar-webezs right now.  Over and over I have seen this act discussed (by both the able and the parent advocate) with words that just blatantly exhibit the intolerance that it sprang from in the first place.  Yes, there is no doubt in my mind that her mother (who will not be named here) was mentally ill.  The system in which she was navigating is very stressful to many parents, I won't argue with you there... but it still does not justify murder, or attempted murder in any way. 

Many people, including some that I respect greatly, have commented on this incident at length.  Anything that I would have to add, at this point, would serve little purpose. As a side effect however, this horrible act catalyzed a lengthy self-reflection re: my online advocacy; an analysis in the works for some time.  I've looked at my efforts, my words, the rationale behind them. Are my affectations effective?  I've had to do this.  Issy's mom was a blogger and "parent advocate" too.  Many self-advocates are wary or flat out despise blogs by parents of kids with special needs.  This event just crystallized those reasons even more.

A valuable resource came to me as I was trying to get my thoughts organized. Alison Piepmier's Saints, Sages, and Victims:  Endorsement of and Resistance to Cultural Stereotypes in Memoirs by Parents of Children with Disabilities provides a great deal of insight into this issue.  Although Alison uses formally published materials for her comparison, I believe that parent advocate blogs could quite easily be used here as well.  This part in particular jumped out at me:
"Many of the memoirs I have read reinforce and thereby strengthen our culture's dehumanizing stereotypes that surround and define disability. Through their use of grief, their emphasis on a limited medicalized model, and their framing of the child's disabilities, these memoirs often represent the child not as a person but as a problem with which the parents have had to grapple. "
It's a fine line sometimes, wanting on one hand to find others to share in the experience, but at the same time, what are the costs?  When we call our children "broken", when we focus on our interpretation of their thoughts and feelings, when we refer to our children with otherworldly terms, when we focus on the difficult times, when all we list are doctor's appointments, surgeries and medical interventions, when we blame our kids for our mistakes and our bad choices, what message are we giving the world?

I just spent most of the month of April talking about my son's heart surgery.  Did I unwillingly perpetuate the medical model? Has my son become a bystander in an accounting that was meant to educate and support those (and their families) that face AVSD surgery?  Has my telling of appointments and whatnot in the early days been detrimental overall?

I don't know.  I just recently checked my Ableism at the door, so I'm probably not the best at interpreting this.

Every time I mention one of the kids or post an image I do think about the ramifications.  I think about it in context to them.  It wasn't an easy thing to talk about my elder son's bullying for a variety of reasons, the main being Quinn's interpretation of such a thing.  I talked it over with my husband,  but I made sure that I asked my son's permission too, before I breathed a word of it.  

Is this exploitative of my family?  I don't know that one either.  There are no T-shirts, I don't have a shop and there is no money being made here.  (There won't be, either.)  I already have a job, so looking for a writing career is not my intention.  The focus of my writing has changed, true, from those early days when I just wanted to raise awareness, find other twins like mine and still research the things that I could not find out about Down syndrome and did not know about prior to becoming Wyatt's mother.  Secondary gains? There are a few, including a general sorting out of my thoughts and meeting a lot of really cool people in the disability community that have helped to broaden my views.

Is it possible that I have reinforced stereotypes of disability?  I'm sure I have.   I too am an able product of this society that needs to devalue and ostracize to survive.   I'm also a member of the medical establishment, the people responsible for the perpetuation of the idea that disability is a disease and needs curing.  Toss parent blogger onto that list.  On the surface, I'm part of the problem.  No wonder I am uncomfortable in my own skin lately.

So why do this?  Why continue doing this when there is so much conflict?  That one is simple:

There are a lot of people out there that hate people like Wyatt.

Even those that claim to represent people with intellectual disabilities and developmental delays are often more concerned about image and the "correct marketing of Down syndrome" rather than basic, civil, nay, human rights. Allowing certain things to slide, things that you probably would not tolerate in another circumstance just reinforces these stereotypes and keeps things like across-the-board inclusion and acceptance out of reach.  Portraying life in over the top happiness isn't helpful either, as it perpetuates "overcoming", instead of just letting people be themselves.  My son is not a product to be marketed like Wonderbread, or the latest pop sensation.

I've gotten a little heat lately as I've been writing about some pretty "heavy" topics and apparently I should be more positive.  I'd like to lighten up, frankly, to be able to write about my daughter putting fries up her nose and announcing she's a "Rawr-rus" and all the little human moments that make our little family.   To make this more of a parenting memoir that focuses on the joy of being... well, us.  Together.  With all our little quirks and idiosyncrasies and adventures.  But I can't.  I can't because society won't let us just be us.   One of us came with an extra chromosome.  To us that's no big whoop, but it's still a dealbreaker to many people.

There are no conclusions to this one.  Reflective practice, when done correctly, is an ongoing narrative.  I know that I'm not going to do everything right, being human and all.  I hope my self-advocate friends continue to be patient with me... even when I need a round of "able-splaining".

I'm going to go spend time with my kids today and make a buttload of tomato sauce.  In the act of creating something to nourish my family through the upcoming winter, I will find a little more peace. As the twins interact with the jungle yard after the rain, as my elder son regales me with his day at school, I will be reminded why I do this.  So that all my kids can one day tell me of their day at school, where Zoe and Wyatt and Quinn can continue to grow and learn.  Together.

So that we can continue to be just us.  Together.

Piepmeier, Alison. "Saints, Sages, and Victims: Endorsement of and Resistance to Cultural Stereotypes in Memoirs by Parents of Children with Disabilities." Disability Studies Quarterly 32.1 (2012):  Disability Studies Quarterly. The Society for Disability Studies. Web. 11 Sept. 2013. <>.

Sunday, September 1, 2013

In the News - August 2013

A collection of news articles, blogs, stories and information about Down syndrome, disability and special needs, from Down Wit Dat's Facebook page.

AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
CASE *NEW!* indicates a lawsuit or proceedings
EVENT indicates a scheduled event
LAWS *NEW!* indicates a new piece of legislation
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study or discovery
THREAD indicates an online discussion thread
VIDEO indicates a video or movie

(neuro)Queer: A Prose Poem Essay
missing my magic unicorns

Quinn defers decision on extra resources for pupils with Down’s syndrome
Leadership in the History of the Developmental Disabilities Movement
I Just Have a Kid
The Problem With Down Syndrome: Part 2

Social Security Administration Erases the “R-Word”

‘Airline banned me from seat’
Seeing But Unable to Believe
Nursing Jude

Disease Is Not A Metaphor
"Leukemia Sucks, Down Syndrome Doesn't"

Defending The R-Word
The Problem With Down Syndrome: Part 3

When Cops Criminalize the Disabled

Action Alert: Contact Governor O’Malley of Maryland
to Demand an Independent Investigation Regarding the
Death of Ethan Saylor - See more at:
The Burden of Goodness





Disability rights advocates, families fight new provision of Affordable Care Act
Like A Person

Petition Calls for End of Electro-shock Therapy for Autism

Army veteran kicked off North Wildwood boardwalk by police because of service dog

Man with learning difficulties to be sterilised in unprecedented court ruling
Don't Call Me Autism Mom
Ethan Saylor: Sheriff speaks about Down syndrome man who died in police custody

Ethan Saylor, man with down syndrome, who died in police custody, may have not needed movie ticket after all

Problem Solver and Redefining Independence

Open letter to the woman sharing my flight from LAX to PDX
Quiet Hands

Hollister Ordered to Make Faux Surf Shacks Wheelchair Accessible

23 Ways To Communicate With A Non-Verbal Child

Family in shock after hate letter targets teen with autism

From Two Ends of the Spectrum, Hate and Ignorance About Autism Abounds


Practice Language for Kids Nervous About Social Life

Future Past: Disability, Eugenics, and Brave New Worlds
Your Worst Nightmare

Down Syndrome Man Goes to Movies, Ends Up in Morgue

Autism Speaks Sued by Mother of Autistic Child


Support for a Mother with Disabilities to Parent

How To Help Sensory Sensitivity
How to Help Sensory Sensitivity

Ali's Place: After school experience for youth with disabilities
Tell the White House to STOP rules that cause institutionalization

Justice for Down syndrome man who died in movie theater
Mad Love
Memories Evoked
Robert Ethan Saylor Petition on Gains More than 300,000 signatures

So Much For Interpretation
Help Avoid a Strike or Lockout, Sign Our Petition

...And that's the news.  Keep the stories and information coming!
Related Posts Plugin for WordPress, Blogger...