Wednesday, February 29, 2012

Thursday - ADHD & Me - Special School Project

Our W is a smartie...but sometimes he finds school "boring" and the topics "boring" and oh lord, how do we keep him stimulated and engaged?

Step in the teaching team! The Learning Leader (aka special ed person), Home room Teacher and the Assistant Principal arranged for W to meet with the AP twice weekly in order to work on a special project....topic of W's choice.

Of course, war was the topic because "Mom, I was made for War. Do you know why? War is in my name mom WARner."  Had I known that I would have named him Jack!
(There ya have it I gave away the W)

Well, little W is so proud and pumped today when he came home with the directions to access his project as it is complete. He even asked me to send it to everyone I know and was a tad disappointed that it would not be on "You Too". (You Tube.)

So, if  you have a couple of spare minutes, watch his video. It's cute. I love to hear him reading yet seeing "him" in army fatigues may have startled me a little but he's loving the project & so proud and so.....what does a mom know anyway?

video

Tuesday, February 28, 2012

TSC Tuesday - Have you hugged your Pharmacist today?

The quest for a topical ointment to treat R's facial angiofibromas has taken  a positive turn. Thanks to a kind pharmacist in Edmonton at the Strathcona Prescription Centre. Oh, if it wasn't a 3.5 hr drive I would hop in my vehicle, race up there and hug her!


{For all you Calgary readers....maybe Edmonton isn't so bad? (There's always been a rilvary between the two cities, you see.) The Calgary compounding pharmacy did NOTHING to help us. NOTH-ING. Anyway.....}

Miss R, who has never met us, went above and beyond by researching TSC and Rapamyacin (or Rapamune).  Because the Rapamyacin ointment is extremely expensive....uh, $3000 per month based on the prescription and strength that the dermatologist wrote.....Miss R researched other comparable meds that are not so cost prohibitive.

Can you hear the angels singing? Hallelujah Halleeeeeluuuuuuujah!!!!

Based on Miss R's findings IF the med alternative is appropriate it, the cost would go from $3000 per month to $400 per month. Hot damn!! It's still a lot to swallow, and our little family may be eating less coconut ice cream and more home made stuff, but oh well. Bup's cute little face will benefit from it as will my tucas.

So, what is the other med compouned into an ointment options?
Sirolimus
Tacrolimus or Prograff

NOW....to meet with the dermatologist for a rewrite and another consult.

Monday, February 27, 2012

Sunny Winter Boys

Higher! And....W doesn't need me to push him anymore....

Bup enjoying winter play.



How do you enjoy these sunny, snowy winter days?

Thursday, February 23, 2012

Deep Rooted Sibling Angst & NET

While I was pregnant with Bup and W was just a baby himself...really, only 1yr....I imagined these two black haired little boys, with curly or wavy hair and beautiful blue or green eyes, maybe a dimpled chin, that would be friends...buddies...pals....brothers to the deepest level.

Fast forward 4.5 yrs and we have two light brown haired boys, more blonder in the summer....one with hazel green eyes and one with blue, blue eyes, both tall, both adorable and fun and sweet with one vying for the other's attention and the other dismissing his younger brother in anger and annoyance and frustration. 

"W never plays with me."
"R is so annoying. He's is too crazy, too weird. Why do I have to have a brother? I never wanted a brother. Give him to another family."
Not the words I ever envisioned from or for my sweet little boys who are to be brothers and friends, not brothers and enemies. There's enough of that in this family world.

This brotherly angst was running much deeper than just simple sibling rivalry. 

Nothing was working. Not encouragement, not talks, not setting up similar interests, toys, not reprimands, not hugs, not one on one time....NADDA!

We needed help. Big Help!

This is where the magic takes place.  After the desperation. 
How do I explain NET? Neuro Emotional Technique. A practitioner tests your body against specific questions and your body responds yes or no, then those areas are adjusted (in this case chiropractically using an activator), specific pressure and pulse points are held, questions asked, affirmations made, and breakthroughs happen. 
It's amazing. It's unbelievable. It sounds like hocus-pocus, crack pot stuff.
It's magical.
It works.

What came out of the these sessions? A greater understanding that W's resentment of Bup all started when Bup was diagnosed which coincidentally is a few months before W's diagnosis. Bup's diagnosis time affected W in so many ways....having his mom taken away for weeks, days and hours at a time due to appointments, hospital stays, seizures, etc. At 3yrs, W's world still revolved around me and there was a lot of uncertainty happening in our home. Even though, B and I thought we were doing our best to keep things regular and normal for both boys, to keep W in the loop and not tossed aside. All of this affected W deeply. Deeply and strongly. Heartbreakingly.

The first treatment brought a breakdown in W. Tears, sad, soul breaking tears. Straddling me, head on my shoulder, crying such sad tears and begging to be done and leave. 

The next two treatments brought no tears. Brought out a happy, patient boy with a bodily response in a positive manner. And now....

After three treatments, W and R are happy, friendly, sharing a room, sticking up for each other,  and play together! This is a FIRST for us.  Even Bup notices the difference as he stated in the truck, "I just like my brother W. He plays with me."
Truly magic.


And I am ever so grateful. 

Can I explain it? Not very well. But NET works. It works and it's worth it. To see and listen to these little brothers play together and laugh together and no more words of hurt.....that is worth everything to me.



ADHD School Blues....nixed!

Poor W was having a rough couple of weeks at school. Every other day there was a visit to the office.
Apparently, playing with a shopping cart during lunch recess....
....making fun of our national anthem while singing it.....
....slapping a friend with your glove after he hit you with his glove....
....and....I don't even remember the other....
are not acceptable behavior. (Ugh. Where does it say one can not be a little boy in grade 1?!)

When it wasn't an office visit day, W would tell me his day was "AWFUL" because class is "BORING", people were touching me during carpet time, ....
Heartbreaking! 

Have you ever felt like you were sending your child to the wolves? Daily?
It's an awful feeling. I cried everyday that W had a bad day.

During all this, did I discipline W at home? Nope. Cause he was beating himself up enough already and had received consequences at school. That's a whole other post.

I even considered only sending him half time and the other half time working at home, doing really FUN things, and focusing on emotional  and social skills.

Thankfully, his teacher asked to meet with me and the "Learning Leader" aka Special Ed Person. Before this request, the teacher and I had been emailing back and forth, sending notes, etc.
The three of us brainstormed, came up with positive ideas for W, shared some points on ADHD ie: Ferrari Brain with Bicycle Brakes, this is a compassionate kid who wants to please and is VERY BRIGHT therefore gets bored, bored, bored and is also extremely hard on himself ("I'm stoopid". I found this written  in his notebook."I'm too silly. I'm too crazy. - Gut wrenching. )

Long story short.....thank heavens for teachers who care.

Thank goodness I have the time to be involved, really involved.

Thankful that implementing these solutions: social stories, books in the breakout room, special responsibilities, getting him up earlier in the morning, bringing him home for lunch, before leaving at the end of each day W and his teacher, Mrs. H, talk about "One Good Thing" and a special project with the Assistant Principal are making a difference.

Throughout this week, each day has been a happy day and there has not been one tear shed by either of us.

Hot damn & Hallelujah!!

Tuesday, February 21, 2012

TSC Tuesday - Lottery Day!

We won the TSC lottery!

Well, not really, but it feels  like it.

Today our post man delivered an invitation to a TSC Symposium , taking place here, in Calgary, in May. Dr. Elizabeth Thiele and Dr. Peter Crino will be there.

Hallelujah!

Seriously....I am so EXCITED!  I feel like we won the lottery.

Sunday, February 19, 2012

Here, there, & everywhere...

The main floor reno...and it was only the floors and a little wainscotting, but it turned our life upside down for a week or so, what with no stove, fridge or furniture...looks fantastic!  I love, love, love it! And yet...all is still a little sideways.
The sideboard did not return. How do I fit everything back into the kitchen.
Couches are not returning....chairs to recover...
Man's World is more like Messy World...but today I moved furniture, tidied lego (gag!...does it never end!), and went through puzzles and games...while children rode on my back as if I was a work horse, laughed and played around me and down right REFUSED to help.
I'll say it again...they're lucky they are cute!
Throw in a trip out of town for Monster Jam. Yup. I did it by myself and we all lived to tell the tale.
All school, OT Therapy, Psych, Speech and more OT and in home programing...
A super fun birthday party...
and now a little stomach flu....
and there ya have it.
Whew!

W has been "counselling" me on healthier living. So to motivate you as well, I shall share his 6 yr old words of wisdom.

"You're a bit fat. Just a bit."
"Your skin stinks."
"You shouldn't drink pop (diet coke) it makes you fat. I'm going to hide it in the basement and if it goes rotten that's good. I don't want you to get drunk on pop."
"I'm not saying this to hurt your feelings."

Wouldn't want to sugar coat anything, would you Sir W?!

*Pictures to come. Not of the bit-fat, drunk pop-drinking me, but of our other adventures!*

Thursday, February 9, 2012

Family Date Night

Hockey night in Canada. The "Farm Teams" for the Oilers and the Flames.
It was family fun.... cheering 3 against 1....the boys and I vs. B the D. Ha! Sadly....our Farm Flames team was losing when we departed. Boo.

W & M at the Dome
Shaved Ice anyone?
No wonder he was bouncing off the walls by the time second intermission arrived! Oh welll....alls well that ends well...and it's all well as the kiddos are sleeping now!

Sunday, February 5, 2012

Weekend Random Pictorial

Dining Nook


There's been a lot of sawing, vacuuming, dapping, take-out dining and ignoring of the children over this weekend. But hey! Look how great the kitchen looks!

W & Benson the Labradoodle-oodle-poodle (as Bup calls the dog)
There was a little dog-walking too. W shone with the responsibility to walk Benson around the block. He was thrilled to do so....until I explained the poop-bag...well, he only walked him once!

W roller-blading.

Spectator Bup.


The boys deserved much more than an outing as they have been so happy and patient throughout this reno....and basically being neglected over the past four days.  

W was thrilled to go in-line skating. And I'm so PROUD of him! Not one tear over falls...and it hurts to fall on your bum with lego in your back pocket.

Bup was inclined to watch and play Angry Birds on the IPOD. One day I'll delete it....and only have educational games downloaded. One day.....

What did you do this weekend?









Thursday, February 2, 2012

We Interrupt Regular Posting...

....because we are armpit deep in house reno's. Well, only one level and that is quite enough!

New flooring equals new baseboards and trim plus a little wainscotting to be added to the eating area and island (tomorrow) and hmmmmm......what else can I come up with? Oh, I'll paint a wall white and maybe the pantry door blue...and....my husband will surely put his foot down now! :)

So, no WIWW, no ADHD Thurs....although there are developments there that includes a meeting with teacher and special ed person as well as a paediatrician and chiropractic visit for an NET.

Yup, another boring week.

Let's just say I am SOOOOO looking forward to next week when I take a vow of silence and join the nuns for the week.  {{sigh...ahhhh}}

Crappy IPOD pic...but see the new floors, trim, tools and B "dapping" the teeny nails! That zone is the eating area and tomorrow it will have wainscotting too. Then....I shall paint. Wuhoo!