It’s a Matter of Justice: UBC Inter-professional Continuing Education’s - 5th National Biennial Conference on Adolescents and Adults with FASD
WARNING: There are a few instances of Extreme Language within this entry.
Attending this event was the most helpful, interesting, empowering, and life-affirming event I have experienced in the entire span of my experience as a Special Parent in Training. I extend my deepest and most sincere gratitude to everyone involved in the execution of this event, especially towards those semi-invisible players who made it possible for me and several other Parents and Family Members of affected people to attend – not to mention those responsible for their financial assistance (as well as the ancillary staff of the Vancouver Hyatt Regency Hotel). The most profound input came directly from those precious few successful affected people in attendance brave enough to boldly show themselves to the other attendees – they humble us all.
The educational sessions were all effectively presented by dedicated and learned individuals and groups who don’t just care, but actually “Get It”. Dealing daily with the billions of people in this world who don’t “Get It” makes this demographic far more poignant. My personal highlight of the entire event was that a wonderful woman who has been diagnosed with FASD allowed me to provide her with assistance on several occasions throughout the three days of the main conference. Her strength of character and perseverance in the face of adversity that has existed throughout her entire life bore witness to why I’ve always been involved in helping others – “…because it makes a difference for this one”. Thank you “S” for demonstrating just what inclusion is supposed to feel like by extending that gift to me.
I won’t be addressing the specifics of any of the educational sessions that I attended at the event in this particular blog entry, but will hopefully be able to pass on what knowledge I received in future entries. Instead I shall be addressing some of the difficulties I experienced in endeavouring to attend the event and the emotions that were dredged up by these minor adversities.
Due to my daughter’s sleep differences I began working towards being able to attend this event over two weeks ago. The need to have Sarah on a nearly “normal” diurnal schedule was paramount to the success of her staying with my elderly parents during the four days of my attendance, and overnight for the 4 nights involved. Sarah understood just how important this event was - not just to me personally, but to both of our future success’. Sarah demonstrated her strength of character throughout.
During the first week of sleep schedule alteration Sarah had numerous extreme behavioural outbursts. Although her bedroom door has been damaged, it remains functional and will stand it’s expected performance for some time to come. Apparently the neighbours are used enough to her rages that they seem to have gone unnoticed. I guess I’ll find out over the next little while whether we’re still as welcome as we always have been in the building. Beyond this collateral damage; my bruises will heal as they always do, and Sarah will learn to forgive herself in the same capacity as I do… eventually.
The sleep deprivation I had to endure leading up to and throughout the event to facilitate my attendance was, for the most part, comparatively inconsequential as well as being more minimal than what I have previously experienced. I did experience a moderate stress-induced neural event (full-body myoclonic tremor) during the Friday session, but thankfully had with me the anticholinergic medication that could stop it as a normal course of my medical maintenance regime. For anyone interested; the drug in question was 10mg. Buscopan (Hyoscine Butylbromide), which is nowhere nearly as effective a treatment as the newer analogue (Hyoscyamine a.k.a. daturine) which is no longer reliably available. The difference in efficacy between these two drugs is intrinsic to their molecular properties and not just due to the longer onset of absorption caused by Buscopan’s enteric coating. It always surprises me as to what extent medical professionals are willing to forego effective treatments in a vain attempt to avoid the possibility of substance abuse.
I was not only required to endure the sleep changes due to the normal course of events, but additionally had to deal with placating Sarah’s (and my Parent’s) insecurities surrounding the changed environment. After each long day of attendance (including two night sessions) it was necessary for me to lay with Sarah in aid of coaxing her to sleep (11:30pm) before being able to finally go to our apartment, kick off my boots, and prepare paperwork etc. for the following day. I still say that nothing feels more satisfying than removing sweaty footwear after a long day of productive work (well, maybe a good bowel movement can compete with that at times). In the end it turns out that I managed on 3-4 hours of interrupted sleep nightly. This will cause some problems for me in the coming weeks as I am now keyed to my “normal” diurnal physical urge to be up with the sun. This will inevitably conflict with Sarah’s needs and I will experience further sleep stress to accommodate her over the next while. It has always intrigued me how this divergence of sleep patterns seems to mimic the differences seen in the astronomical effect of diurnal parallax. Sorry if I continually divagate into seemingly unrelated scientific paradigms, but I suffer from a wide exposure and find it necessary to the facilitation of adequately expressing myself. (Hmmm… could I be more wordy if I tried?)
I can see this entry continuing ad infinitum if I don’t attempt to wrap this up. Parts of the following have been gleaned from text messages et al.
What are the odds????Just to confirm that my life is actually the dream of some demented cosmic joker - as the conference was winding down I began to get teary and felt depression welling up inside of me because now this wonderful 700 strong personal support group I've been blessed enough to be part of for the past 4 days was about to vaporise into thin air. I kept pumping my "good place" and steeled myself to face the ride home like a STRONG Man. I decided to quickly slip out and get home in a jiffy so I could collect myself before going to get Sarah. Parting scene; the crew of the closing celebratory dance number in the midst of group self-support. A good time to head down the escalator. On my way I have a couple of parting words of joint encouragement between myself and the generous, Dr. Rob Densmore. Good ending.I did my first 1 stop train transfer and got onto the main train home early enough to get a decent seat right away. I managed to avoid the rush I'd faced every day previous wherein I had rude and bothersome commuting experiences with no respect given to my crippled state.Doors close, train rolls, the next stop comes, doors open, and who should be the first face I see entering looking straight at me... Sarah's mother.Having not seen or heard from her in 5yrs I had to ensure I wasn't just hallucinating due to the intense emotions I was experiencing and paid attention to where she sat down. Well, the crowd parted and it WAS her. There's no mistaking it. I've known her since she was 4yrs old. She glanced up and immediately strained to avoid eye contact. I felt anger begin to well up inside me to quickly be replaced with a terror of panic I haven't felt in years. What to do? Be calm and cool? Ignore her? Say hello? Hmmm... What had Mr. Dan Dubovsky said in closing about Social Justice and treating others not equally, but fairly? I decided to just try to catch her eye and be kind. We finally arrived at the terminating stop and she quickly left the train so as not to have to acknowledge me, heading for the stairs. I went the other way towards the cripple elevator that has been such a Godsend. I paused at the top of the stairwell to watch for her and maybe make eye contact. Yep, it was her alright. Avoiding looking up at the big hairy me standing there that everyone else was eyeing. I guess she wasn't ready to 'see' me, ok. I waited a moment to allow her ample time to avoid imposing myself upon her any further. I took the elevator down and s-l-o-w-l-y walked to where I needed to catch my bus. All the while still mentally twitching about whether this was actually happening NOW of all possible moments.Sitting down on the bus my head was swimming in the statistical calculation of the probability of such an event occurring NOW, today of all possible days. Profound barely covers the odds involved.I tried calling Gerri to see if I could stop in for a moment and decompress, but only got her answering machine.On my own for this one.Cosmic test.So, here I am texting you, Ruth Anne, knowing you are camping and probably not going to see this till tomorrow. You ARE my life-line right now. Fulfilling the role by the mere fact that I AM texting you for later. :)You fucking ROCK, Doll. I love you and am soooooooooooooooooooo grateful for our connection.Thank you Ruth Anne.Don't worry about what my state may have been right now. The connection worked. There are tears hanging in the corners of my eyes, but I am OK! They are way smaller and far less significant than the ones that kept leaking out at the conference when I'd think of Sarah's strength and the love and caring pouring over all of us attendees from ourselves. I am going to check on my owl right now and then I'll start to think about collecting Sarah from Grandma's in a little while.Loki, you bugger!Trickster must work harder if he ever expects to trip ME up! B-)
**call returned from GerriMusic? Hmmm... Can I call it that?As I was editing this poor quality recording to send your way, screaming, yelling, banging, bashing - thumpthumpthump on my door! Sarah in a horrible state! I haven't seen her this upset in ages. “Please don't yell at me”, she pleads. “No dear, I won't do that.” “What happened?” I ask. With some coaxing and hugging and assuring she tries to speak, but can't. I ask if anyone is hurt, “no”. The short answer is Pappa yelled at her and scared the fucking shit out of her. She panicked and ran to our door even though she hadn't been told I was home.Loki didn't like me taunting him =)).Phone rings, it's Grandma. I don't say hello, but "She's here." Gran tries to explain, I say I know and it doesn't matter. I beg off right away to get back to Sarah. Owl must wait.After some work she's lying on the couch with a few good stuffies under a blanket and calming down. “I'm worried” she says. “About what?” I ask. “Shrek” “Don't worry too much he will be just fine, they won't do anything to harm him.” I must run over and get him now.Sheep go to heaven and goats go to hell and shepherds must sacrifice themselves to ensure that more goats get to be counted as the sheep they really are inside. You can quote me on that. At least I don't think I heard it before. :pOff to collect an ogre now.Later Ruth – I’m on duty again. :]xx…REPLYJamie, my phone is almost dead. I can feel what you just wrote in the core of my bones. YOU are incredible. I don't know what to say besides I am here and I understand you. Will talk to you tomorrow when I have my phone plugged in. Jamie Randall....... wow....((Follow-up: Today when Sarah awoke, she had no recall of the problem she had from being frightened by Pappa last night. Sometimes anterograde amnesia has an upside. I do worry about the cumulative effects of the repetitive cortisol cascade her body experiences – a major component in establishing the cognitive patterns of PTSD.))
Gerri was very worried about how I was. Mostly, she was concerned that something could possibly have happened to harm Sarah. Good neighbours/friends are incredibly hard to come by, and worth far more than could ever possibly be expressed. (Remember to be one as often as you can.)I quickly put Gerri’s mind at ease and explained the stress I had wanted to decompress from was due to having seen Sarah’s mother on the train, and that the moment of greatest need had passed.As it turns out, Gerri has been experiencing far more stress herself. Her sickly mother had finally been transferred from Richmond General Hospital (against better judgement, advice, and common sense) to Fraserview, a local long-term care facility. Naturally, it had ended with an ambulance ride back to the hospital due to the intrinsic failures of crappy care at Fraserview. Out of respect for privacy I won’t go into specifics.Gerri is incredibly stressed as she is forcing herself through the physical strain of trying to compensate for the lack of adequate nursing care by attending to her mother’s bedside needs personally. She hasn’t been eating or sleeping properly and needs a little bit of support herself. I offered to include her in the fish and chips dinner I am cooking Sunday, but she declined as she isn’t certain when she may be back in the building. I’ll check back on her later then.
**conclusion – it’s a small world
During conversations with several of the other attendees to the conference, the subject of it being a small world came up. Mostly this was due to the fact that we had come here from places we all had some type of previous connection with, in the sense of caring for others and thereby creating immediate benefits for ourselves.
It really IS a small world. We may be large in number at 7 billion (or so) individual human beings upon this planet, but we are all intimately connected with each other – not just by familial ties. There is a certain amount of interdependence that we must foster and participate in. Not just to ensure our individual survival, but also to enhance the situation for those who may not be as capable as each one of us feels. This will help to strengthen our survival as a species.
There is no simple and easily applied definition of what levels of neurodiversity are best suited to providing the help we each need. Some people who may view themselves as being at the lower end of the intellectual/functional spectrum feel that they are not able to provide proper help to themselves, let alone anyone else. They must be informed of the richness and necessity of their diverse contributions. What they may see as being not worthy of mention in their abilities and efforts are actually some of the most important core supportive skills available to humanity.
Not only is there a need for universal inclusion, but there also exists the need for each and every person to do whatever they are capable of, whenever they are able to.
The more we practice extending ourselves beyond what we believe we are able to, the more likely these skills are to become intrinsic and instinctive parts of our own personal characters.
When our first reaction to the sight of adversity is an instant urge to join in with our personal skills in any way possible, everybody on the entire planet benefits from the slightest positive action we may engage in.
We owe it to everyone else, and we owe it to ourselves.
It’s a Matter of (Social) Justice.
"Thank You" – Led Zeppelin
If the sun refused to shine, I would still be loving you.
When mountains crumble to the sea, there will still be you and me.
Kind woman, I give you my all, Kind woman, nothing more.
Little drops of rain whisper of the pain, tears of loves lost in the days gone by.
My love is strong.
With you there is no wrong.
Together we shall go until we die.
My, my, my.
An inspiration is what you are to me.
Inspiration, look… and see.
And so today, my world it smiles, your hand in mine, we walk the miles.
Thanks to you it will be done, for you to me are the only one.
Happiness, no more be sad, happiness… I'm glad.
If the sun refused to shine, I would still be loving you.
If mountains crumble to the sea, there will still be you and me…
(In the context of this song, ‘Woman’ represents the positive life force, often incorrectly referred to [in the literary sense] as Gaia. According to an interview I saw many years ago - the authors, Robert Plant and Jimmy Page, originally meant it in this sense. This song pays homage to Earth.)
*** Update: I have come to remember that the day I saw Sarah's Mother on the train would have been on Her birthday! Now I must redo all of my statistical calculations of the probability with the addition of this new variable. I bet it wasn't the best thing She could have experienced on that special day.
*** Update: I have come to remember that the day I saw Sarah's Mother on the train would have been on Her birthday! Now I must redo all of my statistical calculations of the probability with the addition of this new variable. I bet it wasn't the best thing She could have experienced on that special day.
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