Home Learning Week 7 - BC, +/- 1, Braces, Bees, Rain Water

Health

Today is a special day - I'm having a "Braces Off" celebration. I have my expander off, my braces off and I'm sleeping with my (scoliosis) brace off. That's pretty special.

With braces I couldn't eat oranges or peaches - they got stuck in there! You know what I mean, right? They are stringy. I couldn't eat caramel, gum or gumis, either, so today we did everything I wanted to do: one caramel, five gumis and I am chewing a whole package of gum. Juicy Fruit is very spicy when you put it under your top lip.

I want to blow bubbles - how about a new packet of gum another day?

I don't know if my old neighbours will notice my braces are off, and my expander... Obviously they will! I have nothing in my mouth except gum and teeth and mouth. My mouth has a lot of mouth in there! I look so different than before. I totally do, right Mom? It actually changed my whole face.

This is for making my retainer. It was pink and disgusting, then it turned dry in my mouth. I don't need anything in my mouth except my retainer; I'm a normal girl!

Science - Bugs

Beetle and bee - observing, researching, writing

A bee is very soft. The eyes feel like plastic. The stinger is on the abdomen, not the head. Bees are friendly when you don't touch them. Bees drink nectar and make honey. Do wasps drink nectar? Yes, they do, but they don't make honey.

Wasps are not soft.

A bee dies when it stings you; if you want another sting from a wasp, he'll bring you another sting! That's right!

Science, Gardening, Math - Slugs

Used calculator to find total slugs moved to date: 198

Slugs are girls and boys! They're both!

Math - Addition and Subtraction 

Steady progress with addition and subtraction: she is now able to add one mentally and subtract one with a number line, at least 80% of the time, to 10 - and beyond!

Processing Speed

She writes down digital time,
then we count by 5 on the analog clock

This is code-breaking work for Andrew. I have to get a letter and write it in the square and it makes a word. I am fast.

"Jabbed" means poked.
"Wheezy" means can't breathe properly.

Gardening, Cooking, Science

Reverse engineering a recipe - still need mint

We went to the Soap Dispensary to buy clay and cocoa butter for our face masque. The Soap Dispensary smells good like Lush or Saje, but there are no labels - you can buy things there in bulk. You need to bring your own containers. That's good for the environment because we don't throw away packaging.

Science, Math - Rain Water Collection

Observing, measuring, graphing: 22 cm since October 8
Counting by 2, colouring inside the lines

We had a nasty rain storm Saturday. There's lots of rain. Holy crow!

Social Skills

Turn-taking, following directions, comparing, decision-making, counting

Uno is a fun game to play. It's not hard to learn.

Geography, Language Arts - British Columbia

Researching, writing - with Becky

Homework: Three Interesting Things about BC

1. Dogwood is the flower of BC. Dogwood is a tree. It is pink or white.
2. Kitsilano swimming pool is the longest in Canada. It's an outdoor pool by the ocean. I went there three times.
3. Once Upon a Time is filmed in Steveston. That's a part of Richmond. I want to go there and see the clock tower. It's a clock and a tower! It's both! You can actually see Rumpelstiltskin's workshop there, too!

Recycling, Traditions, Communication, Art - Halloween: Wednesday Addams

Wednesday: old dress, stockings, poison bottle

I need to find black shoes. I am going to wear braids.

AZ on Talkin' Trash Radio show, October 31, noon - Zero Waste Halloween Ideas

This is a lot for me. I didn't expect myself going on the radio! I'm kind of excited about it.

Science - More Bugs!

Brown, six legs on abdomen, two long feelers on tiny head, small, speckly wings with stripes on the edges, small, brown eyes on the side of its head 

Our new house has bugs we've never, ever seen in our whole life. We found this in our kitchen. We don't know what it is! It's a strange bug - there's nothing like it in my book! It looks creepy. It is trying to escape. It might be scared. Let's stick it outside right now.

It is not a scorpion because it doesn't have a tail like a scorpion, or pinchers.

We think it is a Helmeted Squash Bug. Helmeted Squash Bugs destroy squash plants and make a stink if you bother them. It's not dangerous, so we didn't have to worry about it. Good thing it didn't make a bad smell in our house!

Have a good day!

Other Home Learning Posts

Home Learning, Day 1, Grade 4 - Smoothie, Recycling Rigid or Soft Plastic, Transfer Station, Compost

Home Learning - Week 2 Chai, Fruit Fly Trap, Garden Kiosk, Albinism

Home Learning - Week 3 Apple Taste Test, Gymnastics, Back Brace, Subtraction

Home Learning - Week 4 Subject/Predicate, Squash, Mint/Calendula Face Mask

Home Learning - Week 5 Slugs, Radish, Mushrooms

Home Learning - Week 6 Thanksgiving, Earthquake Kit, Soaring Eagle

Home Learning - Week 7 BC, +/- 1, Braces, Bees, Rain Water

Home Learning - Week 8 Pizza, Alberta, Halloween

Home Learning - Week 9 Dogs, Earrings, Adding White

Home Learning - Week 10 Christmas List, Cupcake Face Mask, Green Poodle

Home Learning - Week 11 Mango Lassi, Saskatchewan, 10 Partners, Cat

Home Learning - Week 12 Bees, World Book, Lip Balm, Seeds

Home Learning - Week 13  Memory, Sewing, Back Brace Adjustment

Home Learning - Week 14 Snow,  Salad, SPCA, Manitoba, Bison

Home Learning - Week 15 Christmas, Manure, Evil Sister

Home Learning - Week 16 Gerbil, Slime, Hummingbirds, Cocoa

Home Learning - Week 17 Ontario, Apple Taste Test, Denim Purse

Home Learning - Week 18 Thank You Notes, Math Without Help, Term Two Reflection

Home Learning - Weeks 19+20 Nerd Outfit, Quebec, Birthday

Home Learning - Week 21 Emotions, Ordering Numbers, Beaty Biodiversity Museum, Soaring Eagles #4

Home Learning - Week 22 Valentine's Day, Science World, New Brunswick

Home Learning - Week 23 Worried, Adding Tens, Nova Scotia, Science World #2, DIY Lip Gloss Soap

Home Learning - Week 24 Real-Life Math, Nap, Lonely, Wolfdogs, Spring, Chocolate-Covered Strawberries

Home Learning - Week 25 Schedules, Yukon, Pysanky, Bank Machine, Regrouping, Loved, Term 3 Reflections, Soaring Eagles #5

Home Learning - Week 26 Rotten Food, Embarrassed, Newfoundland and Labrador, Can Opener, Skating, Teacher Screecher, Rain Water, Slugs, Word Search

Home Learning - Week 27 Cheer, Fish, Digit Sequences, Spelling "ea", Sad, Spring 2, Matching Pictures, Butterfly Books, Math Review, Private Questions 2

Home Learning - Week 28 I Spy; Subtraction of Numbers Larger than 19, without and with Regrouping; Spelling "ee"; Frustrated; Ancient Greece; Nunavit; Quinoa Veggie Salad; Cat Whiskers; Dog Biscuit; Butterfly Cage; Baby Alive Food DIY

Home Learning - Week 29 Kitchen Scraps, Northwest Territories, Butterflies, Fort Langley, Bike Riding, Estimation, Helpful, Banana Orange Smoothie

Home Learning - Week 30 Watermelon, Money, Tired, Butterflies, Handsome Warren, Catnip, Water Measurement, OT Assessment 2, Rounding, Contractions, Silly, Soaring Eagles 6

Home Learning - Week 31 Ella Enchanted, Butterflies 3, Money, Story of Life 1, Watermelon 2, Sweet Pea, Tomatillo, Disappointed, Visual Memory, Adding Tens, Garden Beds, Muffins, Thank You to Carol, Contractions 2, Butterfly Cage, Ken

Home Learning - Week 32 Encyclopedia Brown, 41st Ave., Money, Chrysalides, OT Assessment 3, 600 Million Years, Mishka, Related Tens, Round-Offs, QE Park, Mother's Day Card, Acting and Dancing

Home Learning - Week 33 Butterflies, Estimating Sum and Difference, Thailand, Money Book, 600 Million Years 2, Library Holds, Mara the Meerkat Fairy, Soaring Eagle 6
Home Learning - Week 34 Castles, Planting Veggies, Long and Short "a", Butterfly Release, Banana Smell, Estimating Sum and Difference, Drawing v Colouring, Horrid Henry, Poppy Seed Pasta Salad, Pond Water 2, Trike Planter, Lush Gift Card, Beekeeping
Home Learning - Week 35 Money, 600 Million Years 3, Long and Short "e", Cirque de la Symphonie, Farm Visit, Sharks, Appropriate Questions, Microscope, Pandora, Telling Time, Estimation, Cheer

Garden 15: October 29 - Almost Hallowe'en

From my sewing room, Thursday, October 29, 2015. My windows are filthy

Here's a rare thing: I am writing this by daylight. It usually happens in the still of the wee morning, pitch black outside, dim lamp, music low. Silent in the house until my daughter wakes to find me: thump thump thump on the steps, tunk tunk tunk through the kitchen. She wavers in the doorway, a groggy angel in her plastic corset and long, stretchy undershirt to her thighs like an 80's Madonna costume gone 101 Dalmations. Back to bed, Love; I'll be up soon.

Dramatic reenactment;
I made like Cinderella, but the birds flew away 

But today I am peering into my back yard - the sun and the yellow leaves of the lilac shining through my maple tree, a stunning, glimmering red. The patchy lawn has been cut, the leaves have been raked - twice! I've put down grass seed, dug out the worst-offending and saddest of the garden plants: a runty lilac, a gift from a friend on the occasion of our first miscarriage, that, no matter where I put it, or how much love I could spare it, has never bloomed. Having exhausted every single possible location for it in the yard - front and back - after 15 years Sad Lilac has finally found a new home in the yard of a neighbour. Maybe this spring I'll finally find out what colour it's meant to be.

There were seven hostas, too, that never delivered. They were orphans from various neighbourhood gardens, on the brink of destruction, and I gave them a fair chance - 3 or 4 years. Time to move on; take your slugs and snails with you, please. They now reside in the garden of a friend of the mother of one of our two wonderful respite providers.

3 birds are splashing in my slimy-bottomed bird bath, throwing water as far as I never imagined a tiny bird could! I'm so happy birds like my garden.

Planets and stars, classes, therapy and specialists appointments aligned today to give me this gift: 5 consecutive daylight hours, obligation-free, to do whatever I dang well please.

Hot air popper - a gift to me and my sister from our grandmother, 1982. Still works great. The faux Tupperware contains two red wrigglers from the Master Recycling course 

The washer is washing. The newly-repaired dryer is drying. The milk has been bought. My daughter's stinky brace is soaking. One toilet has been scrubbed. There is bacon in the oven - one of the glues that bonds me and my son together. I am in my sewing room: Dylan, alphabetically, loud; hot tea; cold water; fuzzy blanket; laptop and guitar. Today I go one step further: a whole batch of buttered popcorn, all to myself. I edit photos and write, sing, dance and eat, cast my mind sideways over some little detail that won't be ignored. The only thing that could be better? If my windows weren't so dirty!

Hallowe'en falling: cool leaves, costumes, and decorations. Which pumpkin houses will we visit this time, the one night it's OK to knock on doors and see who lives where? My daughter will ask, "Do you have a dog? Does it like kids? Can I pat it?" If there's no dog, a cat or a fish will do. Her interest is genuine, and usually good for an extra handful of treats.

While we follow our daughter door to door, our son will join a group of peers, on a mission to collect as much junk food as possible on what is likely his last trick-or-treat.

Lemonade lollipop, tears; I try to keep her safe

Pre-Prader-Willi syndrome, I loved Hallowe'en. Now I dread it. Hallowe'en sucks for people with PWS. As my daughter put it yesterday, after a well-meaning teacher offered her a lollipop, if mummy says it's OK, "I am so angry with you! I want to crack my head open! I don't want to have Prader-Willi syndrome any more!"

As she explained to the mother of another patient in the MRI waiting room last week, "Prader-Willi syndrome is a problem where you eat too many candies and you get in trouble from your mom."

I hate having to be that mom. The one who won't let her eat a lollipop. The one who wants to ban junk food in school and rains on everybody's parade. Pregnant, I imagined baking with my kids, decorating gingerbread houses, planning special birthday cakes. What could be more fun - the way to the heart, and all? But nobody needs that junk, least of all someone with PWS.

Limited to a calorie count half that of her peers, there's not a lot of room for empty calories. Treats are reserved for very special occasions: a whole cupcake on her birthday, with all of the icing intact. Two candies at Hallowe'en, and all the gum in the bag. I'll throw in an extra or two in the days that lead up to the big night - like this lollipop. Her concern: she had never tasted a lemonade lollipop before! Her chance might never come again! The compromise, after tears on both sides, and hugs as tender and tight as possible when wearing a rigid, plastic, body brace: we would place the sucker in a Ziploc bag and smash it on the counter. The piece attached to the stick would be hers.

Sometimes the Great Pumpkin makes something from the good bits of what she confiscates

When she became old enough to notice her candy missing the next morning, I invented the Great Pumpkin - a benevolent, health-conscious gourd that switches out bags of Hallowe'en candy for a gift - a good one. Last year my daughter awoke to a blue Furby that eventually became so nasty he had to be hidden in a closet, where he remains.

"Be careful!" she warns, any time the door is opened.

The year before it was a toy cash register, complete with scanner, credit card, and key. Before that: a nifty child's washing machine with sudsy water in the door and a spinning agitator. I would have loved that as a kid, to go with my child-sized clothesline and pegs. She wasn't so taken, and donated it to her kindergarten class, where she played with it far more than she had done at home.

This year the Great Pumpkin took orders: an American Girl doll, which I found, barely used, on Craigslist. I'm looking forward to making outfits - a miniature twirling nightie, and a plastic body brace.

The way to a boy's heart: the BLT

For our son, the Great Pumpkin generally brings Lego or Nerf guns. This year, however, he requests NO visit from the Great Pumpkin. This year he wants the candy. This presents a whole new challenge. Discussions have begun around how much candy is reasonable, where it will be kept, and when and how it will be dispensed. I'm inclined to agree on a daily limit and leave it up to him, as long as he is discrete - though she will be happy with her American Girl doll, his sister needs no more reminders of what she can't do. But that's just me. Stay tuned.

Hallowe'en candy will be gone soon enough. Next up: Christmas candy canes, Avent calendars, all that baking!, Valentine's Day chocolate and Easter - more chocolate, still. Then just the usual: classmates' birthday treats to deal with, nose-height candy at Safeway checkouts, haircut lollipops, kind strangers who want to feed my kids. It's everywhere!

My five hours passed. Picked up my daughter from school; Speech and Language Pathology, dinner, mend vampire cape and son's favourite flat-brimmed hat, bedtime. Somewhere in there it started raining. If it keeps up there may be much less candy to contend with. I'm finishing this post in the quiet of night. Thump thump thump, tunk tunk tunk - here she comes. Back to bed, Love; I'll be up soon.

Brace Update 1: Treatment Salon

Her arms and thighs are bruised from Humatrope injections

Treatment Salon is open July, June, Thursday, all kinds of days, and September. Can I give you the treatment?

I hadn't intended on receiving a treatment. I had only wanted to ensure her hair was properly washed; she is only 8, and she has a lot of hair.

The Treatment begins with a back wash, using a sizable slice of gorgeously smelly soap - given to her by three enraptured sales clerks at a recent visit to Lush. We had gone there to purchase gifts for friends in Tokyo.

It wasn't busy, and they were following her as she transversed the store, soberly smelling every sample, and occasionally offering brief, decisive comments: Good! So-so (with horizontal wobble of the hand). Woohoo; that's bad! The staff weighed in on favourite scents and products. One gave her an arm massage: she was pleased. The second attempted to impress her with a suds-making demonstration: she was gracious. The third indulgently endured a lengthy series of semi-personal questions: Do you have a dog? Do you have a fish? Do you have a mother? Do you have a sister? Is she nice? Does she work here?

To give her the soap was a unanimous decision. She sniffed it deeply, thanked them, and we left. Within steps she spied the next befriending opportunity, and was off: Hi-can-I-pat-your-dog?

I float in the background of these conversations, enjoying her pure gregariousness - devoid of artifice, or any agenda other than to connect with dogs and people, and to smell things. She loves to smell things. She confirms things by their smell: flowers in the neighbourhood; product in the hair; food in the store. She sniffs the cutting board: Watch the knife! She sniffs the pan: Get your face away from the stove! She regularly sniffs me, sidling up as though to hug me, but never quite; just holding her nose very, very close. Complete stillness; only the scent exists. She is truly in the moment... until I shatter that moment with an uninvited hug.

Her hugs! I just don't get enough! Short, squeezy ones, our whole bodies squashed deliciously together - her crazy hair in my face.  Or slow, drapey ones, after dinner, on my chair, her cheek on mine, eyes closed. I sigh her name. She sighs back. Her hugs are blissful - and rare.

Not symmetrical - the brace over-corrects the curve,
pushing it back the opposite direction

For me, this has been the biggest impact of her wearing the scoliosis brace. Her hugs – when they come - are no longer huggy; they are rigid and bumpy and hard. Snuggling and wrestling with her can cause bruising! I look forward to the one hour each day we remove her brace, hoping for the opportunity for an un-armoured hug. When part-way through her shampoo she offered me the Treatment, of course I stepped into her salon! And she was sharing her special soap - this would be Treatment, indeed.

The substantial lathering is followed by a delicate scrub with an abrasive, pink cloth. Next: scratching fingers - soft and quick and just enough on the raspy side of ticklish to be delightful. This has the added bonus of softening the filth under her fingernails, an on-going issue for a girl who loves worms, making potions from garden plants, water and soil, and wearing polish on long nails.

Rinse, dry off, clean nails, put on special undershirt and brace, have injection, brush teeth. We retire to her bed, where treatment continues with a skiff of coconut oil, and ends, eyes closed, smiling, with us tangled together like two sleeping cats in a basket.

I extricate myself carefully, her undershirt-clad chest slowly falling, then rising to the confines of the body jacket: greenish-gray, 101-Dalmatian-printed, Velcro-secured. From a distance it looks like a slightly wonky, calico-print corset, stretching from pits to tailbone, trussed up in front. It wouldn't look out of place with a can-can skirt. It's even kind of cute. She thinks so, too.

I am delighted and relieved that, after the initial weeks of sore, itchy, red, dry skin, uncomfortable tightness, worrying that classmates might tease, and sadness, she has taken to wearing the brace just fine. Better than fine: one recent bedtime, all three special, seamless undershirts being still in the dryer, she became very upset at the suggestion she sleep without it: Don't you know that my back is growing at night, and I have to wear it every night? Every single night! She's committed, with all her might.

I kiss her eyes and cheeks, stare at her dignified, sleeping face and plan a Treatment Salon of my own: it will start with a trip to someplace full of wonderfully-scented samples for her to sniff, and end, I hope, with a jumble of legs and arms and a happy, slumbering, extraordinary girl. This time she gets the treatment.

Humatrope 4: Lost for Words

Here it is, after midnight, and I have not done a thing to further my medical waste project. I'm at a bit of an impasse with the Words of Love, and things are beginning to pile up. While I ruminate, I thought I'd do some chores, like hemming two pairs of pants for my son, for a (mind-blowing, I hope) trip to Tokyo he and I will soon take. The pants are ready to hem, but it would mean readjusting the tension of my sewing machine, which is set up perfectly for freehand embroidery. So, instead, I sat at the sewing table and wrote out potential words of love on the backsides of a bunch of his abandoned drawings.

The Virgin of Guadalupe and her brother (?)

I wrote: how as an infant she looked like the Virgin of Guadalupe, all swaddled up for warmth; about her fake-fur hair at birth. How she didn't cry, and wouldn't nurse, or even take donated milk from a tiny medicine cup. How, later, she used to reach for any strange man with a beard. How, after several months of growth hormone, she became strong enough to jump, jump, jump in the Jolly Jumper, and in her crib in the morning, like a happy, vibrating puppy.  "Puppy" was her first word, and "Puppy lick-a my lip!" her first sentence. And what she said to me yesterday: I love you so much. More than an angel.

Too weak to cry, eat, or stay warm

Barbies old and new, and none with a matching pair of uncomfortable shoes

Next, I transcribed a recording of her talking to herself this morning about vampires, Barbie shoes, and her brother, while lining up her newly-changed dolls in the bathroom.

6th birthday - a scary vampire, not a funny one!

Nothing that seemed appropriate to embroider...

Then I got into a conversation with my husband about writing another letter to the parents of her classmates, updating them on our daughter's developments: scoliosis, exacerbated by early-onset puberty, requiring a brace. Though most of the children in her class are kind and helpful to her - tying her shoelaces, escorting her to the bathroom - lately she has been teased about her pimples. She is worried about what kids will say about the brace. I am resigned to writing these implorations for understanding and kindness: my hope is these same kids will continue to care for her as they travel through their school careers together. I am arming them with knowledge, so they can respond with understanding.

PWS is such a weird and wonderful condition, and many restrictions apply that would not occur to the average - or beyond-average - person. The usual objective of promoting independence in a child has to be tempered with the best practise of never leaving someone with Prader-Willi unsupervised. Even visits to the school washroom or drinking fountain must be chaperoned: food is everywhere, and any chance will be taken to get it. Not just people food, either, but pet food, dirty food, spoilt food, and things that look like - but aren't - food. It takes a twist of the brain to fully comprehend this. We need all the help from her community that we can get, starting with her classmates.

The first draft of the letter is done. I'll look it over tomorrow. Everyone else is asleep. My daughter is wearing her brace to bed for the first time tonight. A milestone. Maybe the right words of love will come tomorrow. If not, I'll hem the pants. Readjusting machine tension is not that big a deal!

Humatrope 1: Ingredients

Humatrope 2: Test Swatch and Scoliosis Brace

Humatrope 3: Foundation, More Brace

Humatrope 5: Hello Little Girl in the Bullet-Proof Vest

Humatrope 6: Three Distractions
Humatrope 7: From the 13th Floor
Humatrope 8/Sewing Tip 8: Tassel Tutorial