Getting Torran to School... Special Needs Committee Update

Special Education Program Review Committee SEPRC/IPRC Toronto District School Board update:

Ok. Whirlwind. I met with four women, being the principal of the local school, another principal who was chairing the meeting, the special needs coordinator and a psychologist. My impression: this was the "scratch the surface" meeting - and only 20 mins long! It was, mind you, pre-empted by "the school board has cut the budget for educational assistants ".

The committee and I agreed that Torran would do best at his local school (walking distance yay!), amongst typically developing children but he did need an educational assistant. Primarily, this request is put in for safety at the moment (risk of falls/injury because of the CP and risk of flight because of impulse control). For some reason I don't quite understand, they can't involve the Autism team or use his diagnosis because he's not yet a student formally. I'll ask at the JK open house tomorrow what that means, exactly.

Of course, he'll need the support for the Hard of Hearing, involving an FM system. I go to a meeting on Wednesday regarding that process.

It seems that his safety (read: preventing a lawsuit for a child who runs out of the classroom and away from school because he can't follow the program??) is more pertinent for getting him an EA than his developmental needs right now. Or, at least on paper it seems that way.

What happens when there isn't an EA available to help him in the fall because of budget cuts? I'm told that the principal (who is very nice and seems to have a vested interest in her students) will "shout and complain" to the school board to get help for him. One interesting point which the psychologist made: Torran's skill set may be above those of a special needs class, and placing him in such a class may render him getting less help from the teachers because their time would likely be more focused on the children with the more difficult behaviours/fewer skills. Therefore, a special needs class may not be of any more help to him despite the higher ratio of teachers to students than in a "regular" class (i.e. with an EA).

Overall, it was a painless and direct meeting. But after all the hardship stories I've been told by parents, I'm still holding my breath.... but then I always tend to do that with him, don't I?

Calm of the Dawn

This morning I've awoken feeling, well, alert for lack of a better world. Usually when I get up before 6am for work I'm groggy and spend an hour "coming to". Certainly, my circadian rhythm is not in unison with mornings!

Today, however, I'm feeling clear of mind and pratically energetic, despite my raw throat. I've been dealing with my second viral throat infection (or something) this spring. The last was at the end of April, not all that long ago, whose first night was so bad I was unable to sleep (no analgesics) and drove all the way home from a hotel after attending a SCA event in Lindsay at 2am (Septentrian Baronial Investiture).

So, tylenol on board, tea in hand, I sit here gazing onto the quiet residential street wherein I live and feel contemplative with a desire to go for a fitness walk. I can see why runners get up early to do their thing. Too bad I don't have time to fit that walk in before work! Instead, I pursue the reflective drive (which you can tell I have because I've written three paragraphs with narry a point and lots of parentheses).

My little man has made some lovely strides this year. He started ABA (Applied Behavioural Analysis) Autism therapy focused on social interaction in April. The class is comprised of 6 students with Autism and they work with 3 therapist teachers to learn how to interact and play with their peers. In the few weeks that he's been in the class we've noticed more changes in him than the last few months of nursery school (which, in and of itself had made some advances in his communication skills and integration into a structured setting).

I am still conscious of his differences, mind you, compared to children without challenges - be it his physical or mental hurdles. However, it is wonderful to see him progress forwards! And I delight when he comes up with something out of the blue that is new for him, like asking people (and children!) what their favourite ice cream is. Mind you, he is still learning to wait for a response and can't seem to then generalize that question asking skill into a conversation.

His conversations are no longer limited to question/answer, though. He's started to share information that he remembers, often from a Thomas the Tank episode. That's something to keep an eye on (ever watchful) because a person with autism can dominate a conversation not understanding why other people either may not be interested in the topic or who may want to get a word and therefore become disinterested because they can't talk...but I'll shelve that for dealing with later. He still repeats entire dialogues as he plays with the trains (unrelated to what the trains are actually doing) but then he also comes up with his own stuff too. Less often do the trains actually talk to each other in his pretend play.

Turn taking is still a big big hurdle. Torran likes to play on his own and has started pushing other children's hands away when he's engaged in an activity. He also has absolutely no interest in team related sports. Our goal of getting him into soccer at the age of 4 seems unrealistic at this point. The best we can do is play chase for a limited time, and he decides if he's the chaser or the chasee. But he enjoys running though (again, not with me pacing him), so that may pan out to be a sporting option for him. He's been doing it very well without his leg braces on the last few months, so we'll have to see what happens when we put them back on.

We took the braces off because I had to do something firm and consistent for his toilet training. It was just easier for the school to be able to change him without the braces on (plus I didn't want them to get dirty - they cost $1500 after all!). With out holiday travels, we had some success with Torran announcing his needs. However, it was a pipe dream. The day we got home from Scotland, bam, back to self-soiling.

So in February I started to have him with no pants or underwear on the weekends. There were accidents, but the concept of using the loo started to kick in with him. The other part of this toileting routine was putting on the potty whether or not he had to go every twenty minutes. We'd sit and read, sing songs, etc and my back ached as I squatted in front of him! At school, they couldn't manage the same frequency, but I did ask them to try every half hour... they never seemed to capture much from him regularly, though.

We lost some ground, in my humble opinion, because of the lack of consistency. I certainly couldn't send him to school half naked in February!! Even if we did have a warmer than usual winter! Our initial plan with the school was to send him in pull-ups if he didn't have a BM in the morning, to make their job cleaning easier.

Before too long, he lost the plot back at home, voiding in his underwear again. I searched my archives to figure out what to do! And then I read this post by Natalie Aguirre about her daughter Elaina
http://asd2mom.blogspot.ca/2011/03/potty-training-my-non-verbal-autistic.html

So I got tough and stood my ground: no diapers or pull-ups at any time. I had both Bruce (who was concerned about messing) and one of the school teachers disagreeing with me. I maintained that if Elaina could do it, so could Torran.

I also changed our reward system from stickers after success to eating smarties whilst sitting on the toilet and voiding or defecating. If he was unable to tolerate just sitting on the toilet, I would have given him the same reward for sitting and not jumping off.

Slowly we saw some results. It particularly hit home when Torran started to ask for a smartie after he'd pee'd. Two chocolates for poo didn't have the same effect.

And it was a hard road: in conjunction with his colds and ear infections, we couldn't go swimming because we didn't know when his accidents would be. We had to carry his little luggage of cleaning and changing supplies with us everywhere. The school constantly asked me to change my mind. I was very mindful of his gross motor issues without his braces.

Then, the Easter season hit. And it wasn't religious prayers that made all the difference for success with BMs. It was Easter marshmellow peeps. I not only broke my "no food for reward" rule, I dessemated it, giving him an entire yellow peep larger than his little mouth could manage for every time he pooped in the potty regardless of the time of day. He had a store of them at school, and to heck with the other kid's jealousy. We bought up 10 boxes, each with 10 (or something) yellow delights in them to see us through the next few weeks.

Finally, finally, finally, a month later Torran turned a corner. And we knew that we'd had the most success ever when we took him to Great Wolf Lodge, with its indoor water park, and on both days, in the water park, surrounded by environmental stimuli, being physically active (which makes bowels move), and being very focused on his own enjoyment of an activity, Torran announced that he had to go poo... and waited till he got to the toilet!!!!

Two weeks later, without a single accident at home, school or out and about, I called the Easter Seals and told them I no longer needed the help of their incontence supplies grant. The next day he had an accident... oops! But I was not deterred. Sh*t happens.

Since then, he's been consistently good, even reminding me of what I've said to him so many times during the training "I can come back to what I am doing"... my little love :D

Hospital Math

2 Nurses
+1 doctor
+15 patients
+1 desk clerk
+6 stretchers
+10 chairs
+2 code blues (respiratory/cardiac arrest)
+1 code red (fire)
+1 code pink (infant respiratory arrest)
+1 lab machine down
+four hours during which there should be two half hour breaks (by law!)
= no, I don't know how long it's going to take. I'm Sorry. But we're doing the best we can, really.

A Thank You Gift for Me.

For my service to the Septentrian Baron and Baroness, Percival and Christiana, during their tenure. Artistry by Desiree (Lady Augusta of Ben Dunfirth)

White Wolf Fian: Medieval Medicinal Garden Update - Spring 2012; and Daffodil/Affodil

[edit: this was a post I started during that really warm week... and didn't get back to finish it until the cold snap - hmmm. So it will actually be posted Mar 30 despite what the date may actually say]

I can't believe it... I was *gardening* this week - and it has nothing to do with the lack of snow! This heat wave is totally in my personal pleasure zone, given that I'm the farthest thing from a snow bunny... which is odd, because apparently I used to refuse to come indoors even in the wintertime when I was a child.

Moreover, I'm excited to report that my transplanted peonies are growing and most of the medieval garden has survived the winter, with indications of growth showing! There are some no-shows, however... pout pout. I failed to winter my rosemary in my garage successfuly, mostly because I didn't remember to water if properly. Besides the peony transplant (which they apparently don't like to do and I took a risk doing it in the fall) I am most tickled that my Laurel Bay tree wintered indoors nicely and is showing signs of new growth already. Now I get to baby it and give it outdoor time daily. And who knew, Bay is susceptible to sunburn! Something I just learned yesterday. I'll have to change it's position in the garden this year and see how it fares.

As part of my learning sphere in the White Wolf Fian challenge, I've decided to include a description of the plants I'm growing and their medicinal uses in the medieval period. In celebration of this early spring, I'll start with Narcissus pseudonarcissus or the Daffodil (wild).

The Name

This enlightening eager bloomer was known in SCA period as a variant of the latin Affodilus/Affodillus, with spellings of Affodil, Affrodil, Afodill, Affodil and Affodile until (perhaps) the 14th Century. The greek used the common name Asphodlos. In late middle English it was spelled asphodel. One source I read suggested the common name stems from affo dyl, "that which comes early".

I am not au fait with the entire language/science of botany, however, I have learned that whilst all Jonquil are Daffodils, not all Daffodils are Jonquil. Furthermore, the specific medieval species is N. pseudonarcissus for those who wish to have the most accurate plant.

By the 16th Century in England the plant was commonly referred to as Daffodill. The name change is most likely attributable to the Dutch lingistics of de affodill, rather than the French d'affodill (Liberman, Anatoly). White Daffodil are also known as Primrose Pearls (peerelesse). Medieval Christians also knew this flower as the Lenten Lily. The modern common name varies in different areas of the British Isles including daffy-dilly, butter and eggs, Easter Bells, Fairy Bells, Hoop Petticoats, Goose flop, gracie day and Wild Jonquil to name a few.

The daffodil was well known in ancient Greek gardens. The name Narcissus stems from the story of young Narcissus, son of Cephissus the river god and Leiriope, a nymph. Unbeknownst to him, the wood nymph Echo loved him madly. As she could only echo his words back to him, he remained ignorant of her love, even though she pined to her death over him. Her reverbs moved Venus the goddess of love. She took revenge on unsuspecting Narcissus with the help of Cupid. Cupid's arrow struck Narcissus, cursing him to love whomsoever he next viewed. In one version of the myth, the youth who fell into a river and drowned when gazing longingly at his own reflection; another finds only the delicate flower at the place in the river where he came to visit himself and pine every day. As tribute, the gods named the river side flowers after him. Narke comes from the Greek "to numb". Other Greek connections to Narcissus also involve the story of the goddess Persephone and in the belief that Naricussus grew in the afterlife Elysian Fields as food for the dead.

Narcissus is mentioned in Theophrastus' written work Enquiry into Plants, written about 300BC. It originates from the Iberian Pennisula of Spain, Portugal and the Middle East. It was well known across the Europe, mostly as a wild flower. This may have something to do with a supersition that daffodils were unlucky (related to the story of their name and association with the dead, perhaps). The Manx people on the Isle of Man would refuse to have Narcissus indoors before the goslings have hatched. On the other hand, the number of viable goslings in Devon is said to be mitigated by the number of daffys brought indoors. In some regions, it is still considered unlucky to take daffodils indoors, being called "grave flooers".

In the 17th C, John Gerarde (Gerard) wrote that "Daffodill...is most common in our country gardens, gernally knowne everie where...But it is not greatly to our purpose, particularly to seeke out their places of growing wilde, seeing we have them all & everie in our London gardens, in great aboundance".

Medicinal Use

Warning: Daffodils (leaves, stem, bulb) have a sticky white mucilage which needs to be handled with care as it contains alkaloid crystal lycorine, a skin irriant. Wear gloves! This also protects them from being eaten by garden guests and most insects. It may also be why they aren't found in all modern herbals. Please handle "medcinal preparations" with caution and wash your hands immediately afterwards! As they are no longer encouraged as a home remedy, I do not suggest actual usage of these plants. The parts of the plant may cause contact dermatitis or nausea and vomiting if ingested (side note: the mucilage also intereferes with the blooming of cut plants in a vase)

[edit note: specific references coming with later editing... have to pick up the boy from school!]

In Humoral theory, it is governed by Venus except for the yellow flower which is governed by Mars.

The greek physician Galen, who widely influenced medieval medicine, wrote that the dried roots of Narcissus species were very useful when crushed up and combined with honey for the treatment of open wounds. The bulbs, applied as a plaster with honey relieved pain from burns and malady of the joints. The dried and ground up bulb was used in small quantity, alone or mixed with barley, to induce vomiting and "purging".

The Horus Sanitatis or Ortus Sanitatis c. 1491 indicates Narcisuss for the extrication of thorns and splinters, the removal of spots on skin [edit: medieval aesthetic treatments], and the soothing of wounds and burns.

Medieval Arabs used the mucilage to treat baldness.

It was used to treat leprosy (ouch!) (Rawcliffe referencing Bodelian Library MS Ashmole 1443 pp. 164-5; MS Arundel 42 fo 12r.)

Egyptians used it as a funeral wreath.

Ancient Roman Aulus Cornelius Celsus wrote of Narcissus in De Medicina that it is an erodent, an emollient, and "most powerful to disperse whatever has collected in any part of the body" (i.e. induce vomiting/gastritis). Roman soldiers used Affodillus preparations to commit suicide if they were captured.

References used:

Theophrastus' "Equiry into Plants" translated by Sir Arthur Hort
http://www.archive.org/stream/enquiryintoplant02theouoft/enquiryintoplant02theouoft_djvu.txt

Liberman, Anatoly ( 2005?) Word Origins and How We Know Them: Etymology for Everyone. Oxford University Press.

Rawcliffe, Carole. Leprosy in Medieval England.

The Cloisters Museums and Gardens http://blog.metmuseum.org/cloistersgardens/2009/04/09/daffodil-affodil/

Translation of Aulus Cornelius Celsus' De Medicina, by F. Marx, 1915, as reprinted in the Loeb edition, 1935 (Vol. I) and 1938 (Vols. II and III).
http://penelope.uchicago.edu/Thayer/E/Roman/Texts/Celsus/5*.html

Culpeper, Nicholas. http://archive.org/stream/culpeperscomplet00culpuoft#page/110/mode/2up

http://archive.suite101.com/article.cfm/daffodils_garden_and_show/15165 Clay Higgins referencing : Todd, Pamela. Flora's Gems, The Little Book of Daffodils. Little Brown and Company

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2856661/ Narciclasine to treat Cancer

see also: The American Daffodil Society FAQ http://www.daffodilusa.org/daffodils/faq.html

Mini-Marvelous March

Despite all the negative experiences and schtuff we've been going through in 2012 thus far, I have had some lovely and even glorious moments...

like Torran's birthday weekend. Saturday, a housefull of friends and their young children storming with glee through the house followed by a quieter evening of snacks with family (well, save for my Mum who was still in hospital, sadly); Sunday an excursion to White Meadows Maple Syrup Farm on Effingham St. with the boys (go early if you want to eat on site - the line up can be an hour long) with the boys followed by a simple evening of embroidery with a couple of my SCAdian clan. Oh, by the way, if you venture to White Meadows and don't want to eat there, we found a lovely little bakery/cafe with a charming proprietress just 10 minutes up the road: Nature's Corner Bakery and Cafe in Ridgeville at the corner of Canboro Rd and Effingham St.

Another marvel this march: my little man's developments. He's taken to running! We've had the leg braces off to help us with the potty training (still very slow progress) and he ran our usual 1.2km walk home from a coffee shop! Okay.. it was running in spurts as I had to keep him close. But, for the first time, he didn't ask to be picked up and carried home (he also walks the 1.2km to get there).

In another Wee Man moment, after he'd been put to bed he came out of his room mumbling away to himself as he often does. This was the first night after the time zone change and even though the blind was down, he had extra light in his bedroom. I asked him calmly why he was out of bed. He thought about it, got a very matter of fact and serious look on his face and said "because I don't want to go to bed." I couldn't even be upset with him! Answering a why question properly, using the right pronoun and not getting anxious over the conversation! Just awesome. I told him that I heard and understand that he was having fun earlier, but it *is* bedtime now and redirected him back. I went to work, but Bruce said it still took him another 45 minutes to fall asleep.

Finally, this weather - I love this weather! Whats more, this weather is allowing me to embrace my new drive for gardening... I have been out in the garden cleaning it up!!! That's just amazing.

What is Truth?

One of my faults is that I'm almost always "ON". When hanging out with my kid, this means that everything becomes a teaching oppportunity. I'm sure that I'll have him rolling his eyes into his head "not again Mum" by the time he's 7.

For now, he's the (almost) for year old sponge. Learning is interesting, so long as he's not being distracted, hyper or dis-interested.

Torran understands the abstract concepts of real and pretend. He learned it whilst playing his favourite pretend game: cooking and eating (play based learning FTW). So, yesterday when he told me an non-truth in his anxiety underlined autism way, instead of ignoring the anxiety and simply correcting him, I created a learning opportunity for a new abstract concept: truth vs lies.

It kinda blew up in my face, though, when he asked me, "what is a truth?"

I struggled to find simple concrete words to explain lies and truth. I told him telling a lie is saying something that isn't real. For him, that translated to "a lie is a pretend". Not really what I was driving at.

Because for Torran, the corollary is something true is something real. To Torran, that means something he can touch, taste, see and feel.

But truth is not an object. So how do I explain it to him if he undestands that "real" things and "for real" (like eating food for real) are concrete physical items?

I'm not a philosopher by any stretch of the imagination, although I am prone to being too analytical. This quandry, in combination with current personal life events, kept my brain spinning last night.

One person's truth is another person's lie. Truths are what we each perceive them to be. Or what we want them to be. Moreover, there are rules about when we share truths (Yes, I took out the garbage) and when we don't (Man, you've put on a few pounds). Likewise for lies.

I feel this pressing burden as a parent of a child with Autism to guide him through these abstract concepts and rules but I don't know how to do it. Or when to do it (developmentally). If he's ready to understand the abstract concepts of true and lie, is he ready to understand when to use it? Will he be mentally congnizant of the unwritten social rules it when he can? Or will be he the ostracized "rule keeping tattle tale" of his class?

and yet, he's only (almost) 4

Happy Birthday Brucie!

As you can judge by my lack of posts so far this year, I've been a little overwhelmed recently. Sadly, the circumstances are not going to ease up in the immediate future. Perhaps by mid-year.

In the meantime, I pop onto the internet to tell my husband: Happy Birthday!!
I love you so much!

untitled - but apropro

Standing on the brink
Looking
down into
the inky
darkness
Deep breath in
Walk away


(written by me)

Burning at Both Ends? Rather, the Whole Thing in Fire!

I do not like the start of this new year. Let me just put that out there.

As if life wasn't complicated enough to begin with, I have another family crisis issue to attend to that is actually taking me away from time with both my husband and son. We've had to cancel a holiday for stress relief to take on board more unwanted stress. I can't attend certain seminars for Autism therapy/understanding because my attentions and funds are being pulled elsewhere.

And unless I want to empty my bank account and face the wrath of a woman scorned, I have to sort it out with my own two hands.

Someone said to me recently, that God has a plan for us all. That's a great cop out isn't it? Certainly feels that way to me. I've started to read the family story of two children with Autism, Let Me Hear Your Voice by mother Catherine Maurice. Would that woman have chosen to have children with challenges just so she could write a cathartic book and hopefully help others? I seriously doubt it.

I'm in the "sandwich" generation between my mother's acute health issues and my disabled son. I haven't even gotten a handle on his Autism yet. I'm not ready for this.

You Done Good - But You Had to Run Ragged

We have a system in place, like most emergency departments do, to help manage the delay of discharging a patient from the ambulance into our health system. The delay is called "offload delay". There are all sorts of metrics and politics related to offload delay, and it's not pleasant to experience for anyone.

The purpose of our offload system is to get the ambulance crew back out on the road. To some extent, it's to have the patient access the emergency health system faster, but I've done the same "pre-doctor" second triage on a patient in an EMS stretcher as I do with the patients who have walked in and are waiting in the lobby.

In our hospital, if you take an ambulance to the emergency but you can walk or sit in a wheelchair, and don't have otherwise life threatening symptoms, you'll be "offloaded" into the waiting room, if there isn't an assessment space for you. For the patients who can't walk, we have four offload stretchers with a designated nurse. Once those four stretchers are filled, then the crews waiting in hallway(s) with their patients until the next available spot.

The only folks who don't experience offload delay are those who have stopped breating, are having severe respiratory distress or having an ST-elevation heart attack (STEMI). In other words, true emergencies.

Yesterday, I was the designated offload nurse. From the moment I arrived at 1130 in the morning, until 2:30 in the afternoon, I did not stop bustling from patient to patient, triaging ambulances, drawing blood, changing incontinent patients, walking people to the bathroom, assessing patients, carrying out orders, documenting, giving medications and uber-multitasking. In the first hour I offloaded 5 ambulances - two of which had ambulatory patients that I could move to another area of our department. I managed another three ambulance offloads by 6pm.

My charge nurse and manager complimented my "great work"....

And whilst I appreciate the pat on the back, I have to wonder why I nearly had to kill myself in order for the system to work so efficiently (which got me the compliment). And is working like I've literally thrown a dozen china plates in the air at the same time and have to catch all of them before they hit the ground really worth a pat on the back?

Yup. 2012 has Started.

This is my motto for the year. It's a WWII poster released by the British Government which has recently found renewed fame in UK pop culture.

Needless to say, my preoocupation with life has kept me from blogging, for which I apologize to my most fervent readers.

I have holiday snaps to update and life stuff to discuss. But for tonight, I say "hi! I *am* alive..." and then head to my pillow.

G'night.

Well, Now What?

It's been a little hurricane of illness in our household, between my miscarriage and D&C, my cold, T0rran's fever and cough, and then Bruce's cold.

By Wednesday it finally looked like we were heading back to healthville, as all three of us were fever free and back to our designated routine activities in some degree of better functioning.

Today, the wee man is sporting a fever and a small rash to the side of his mouth. Hand-foot-and-mouth disease? Freakish fever of unknown origin?

And with our impending trip home, it makes me kinda nervous!

It will *Never* Feel Right. Nor Should It.

For Keegan and Neil.

Theirs is not my story to tell. Perhaps one day, I will be given permission to share the tales of these little boys, born to different families, who faced death and did not win.

In the meantime, I can convey my sorrow for their families and the people who love them.

My FB post today:

I have heard of two deaths of a child in less than 24hrs. One of someone I know, another through a friend. It is nearly incomprehensible to me that such unfairness exists in the world, when so many people either do not want or do not appreciate the children that they have (or worse!). If you are a parent, tonight, give them an extra hug and kiss and KNOW how special that life is to you and the greater world around them. May these newest angels find peace and happiness on their next journey, and their families find some measure of comfort in knowing that so many people would take away their pain and bear it for them if they could.

Not Quite a Deer in Headlights

I cannot say that I have writer`s block because I do not know what to say.
Nor can I truly say that this is a block.

It is more a of a writer`s stun.

In being conscienscious about what I write, I have to engage in self-censureship.

But this takes away from my true humanity, in my humble opinion.

From thence I pontificate about what is our true humanity... the reflections we post online, or the ones which we do not share with the world for fear of retribution, judgement, employers or pity.

Ironically, the world is no better poised right now to expose the inner self for a deeper understanding of each other, whilst at the same time being made to crop, nay distort, that experience down to two sentences which won`t get you flamed or fired.

Instead, I write nothing but a cryptic hodgepodge.

Enjoy. I`m off to bury my brain in Warcraft.