Sunday, September 25, 2011

Stickmen and Homemade Space Shuttle

Draw a STICKMAN! Seriously - did you enjoy that as much as I did?! (Make sure you clicked the link ;-) for your adventure! Cheap and simple entertainment! Here's my big headed stickman...

Our study of the rainforest ended, and now we are in space. My logic is that in order to study the solar system, 'ya gotta have a way to get there...thus, Destiny needed a Space Shuttle! Between Buck, Destiny and I, we engineered the "Destiny 5" (hey man, in kindergarten, this IS logic!)

This video took place a couple of weeks ago. Today, here are both kids just before our launch to the moons!

Next step: making paper mâché of each planet! This one's gonna be as much a lesson for teacher as student! I accept all advice on this craft... ;-)

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Wednesday, September 21, 2011

Some Fun Happenings Despite Difficult Times

The Sunday before last, we had home school with big brother, Benny. It was our big butterfly lesson.

We first transferred our Cocoons from their jar to their Butterfly Habitat net.

We then glued butterfly coloring sheets onto construction paper, cut the butterflies out, painted half, folded it symmetrically and VWALA! We had symmetry!

We then drew symmetrical lines down our faces!

We also created butterfly life cycles!

We had such a neat learning experience! Benny points out symmetry all over the place now.

After two and a half weeks of raising our butterflies from larva, it was time to release them to the world. This was Destiny's job, and she did awesomely! Watch this video...

Benny went on a 3-day, 2-night field trip to Keystone Science School with his class.

He had a wonderful experience and came home talking up a storm! He couldn't really remember what he learned but he definitely remembered hiking for nine straight hours (LOL - Ya Right!) and all of the fun games he played with his friends! Oh my goodness! - the child REEKED something fierce upon his return! YUCK!

Many of you know that our family has had a difficult few weeks. Destiny's cold triggered the progression of her Dravet Syndrome and we spent much time in Urgent Care and Children's Hospital.

Today, though, we went to Watercolor Wednesday at World of Wonder Children's Museum and had a great time! Pics!...

Tomorrow evening I will have Wi-Fi back at our house, making blogging much easier! YAY!!

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Friday, September 9, 2011

Field Trips and Girls Basketball

We went on a family field trip yesterday morning to our local fire department. Seriously, it may be one of the best things we've ever done - it could not have been a more meaningful experience for each of us.
I laugh...and I cry...Three of the five firemen on duty knew my sweet Little Destiny!

The firefighters/EMT's were incredible wonderful to give each of us what we needed.

Destiny spent nearly the entire hour in the Ambulance, getting familiar with all the gadgets, and doing a bit of play therapy in there. She also learned about calling 9-1-1.

Benny got recognition for being the Super Big Brother, and too often, usher for the firemen when they arrive at our house. He was all over every vehicle, asking very complex questions about each and every tool.  He soaked it all up like a sponge!

I was able to present a clear picture of who we are — HAHAHA - when we're not in crisis mode, give them (and even dispatch) valuable information about our needs, and also ease some of my concerns.


Before going, we created the following (very cute!) list of ten questions:
1) Do you really have a dog here? (no, but they're working on convincing the chief! ;-)
2) Do you have a family? (yes, they are just regular guys...48hr shifts)
3) Do you ever feel afraid? (yes)
4) Do you ever help the policemen? (Quite often)
5) Why do firemen always come before the Ambulance and paramedics? (They have EMT's on every firetruck and all of the same equipment to do everything an ambulance can except transport)
6) Do you feel sad when you see someone hurt? (yes, but usually they can help them, and that makes them happy!)
7) Can we ride the fire pole? (LOL they want a fire pole, too!)
8) Can we go in the firetruck? (Absolutely!)
9) Do you ever get lost going to a house? (no)
10) What happens if you get two calls at once? (the next closest crew goes to the second call)

And, I just have to share this video of our Basketball Team!

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Sunday, September 4, 2011


When the children are in bed, and the likelihood of a seizure is low enough that I am comfortable leaving the bedroom for 30 minutes...this is what goes down, Ladies and Gents!...


I can't help it - I take my gaming very seriously! ;-)

The kids don't know about this...I'm very careful to put the Plug & Play joystick away immediately - like nothing ever happened. Shh! The graphics on these old video games are a sure seizure-inducer (an idea for our next EEG - LOL! - but Desty doesn't seem to waste any time seizing on record...)

Playing PAC MAN is definitely one of my favorite childhood memories. I only need to control the joystick - no button-pushing required. My dream is that one day, PAC MAN can be recognized by infrared in my elbow joystick...then I could really eat me some ghosts!

Aleeza? Friends at ATP? Are you up for a project, and blast to the past?

Thanks to my 'ALMOST brother-in-law' for giving this joy back to me after decades!
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Saturday, September 3, 2011

No More Baths (ADAPT is mentioned)

Below is Benny's video response to the wonderful movie,"No More Baths". Make sure you watch part two, as he relates the movie to his life experience, ever so briefly.

Part One

Part Two

As Benny watched this movie, he was at the end of his seat, very emotionally invested.

Proud Mother Alert!

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Friday, September 2, 2011

When Life Gives Us Lemons...We Make Lemonade!

I have been listening to Destiny's Musical practice CD too much lately, thus this post's title. Last November, she was a clown in a local Children's Musical, "Circus Circus". This past spring, she was going to be in a musical about fish but I ended up pulling her because her health was so completely unstable :-(. Alas! Now she is back for a round of Lemonade!  

When I see her in practice, enjoying it, really picking up what she can, my heart feels like it may implode! What a total difference not having absence seizures makes, while in that type of group setting!
She LOVES it, I love that she loves it, and it can be counted for K Language, Social Studies and P.E.! As I've heard several times now, a musical has three components: 1) Singing 2) Acting and 3) Dancing. It truly is magnificent, and it's her very own. 

There's a part in Lemonade! when someone shouts, "Someone call a doctor, someone get a nurse!" Every time she hears it, my daughter bursts out laughing and repeats it over and over! Unfortunately for Desty, she relates on a deep level...The magic in this is that the teacher is giving her that line, and for once Destiny will have the control; she won't be the one that needs medical attention in the musical. HeeHeeHee!

Destiny also is in Biking, and has already gone to one of many Homeschool Days, we have memberships to the zoo

a few museums, gardens and Discovery Days. Benny's kindergarten teacher whom I absolutely ADORE is a natural creative genius and she's doing three hours a week of pure creativity/crafts with Desty - which I'm so so thrilled about!   

So, once in awhile, when I tell people I'm homeschooling her, I sense their concern that Destiny is missing out on socialization, or that she is being segregated in some odd way. Well, let me set the record straight, right here, right now - Destiny, and many other children who are homeschooled, get much more socialization than they would sitting with the same thirty children day in and day out, in the same environment, PLUS these kids avoid some of the pressure a class situation can produce. Lonely, it most certainly is not!
I digress...(saving my sharp opinions about stigmas for another post. I want you all to see how totally and completely blessed we are here!)

I don't teach by any one curriculum. I have gracefully by-passed the stringent constraints of the school district by enrolling Destiny into a private school that allows for homeschool with whatever curriculum I choose. I refused the state's "online school" because if I'm going to teach my child, I want all of the responsibility, and I certainly don't want to be micro-managed in this.  

It's so funny...Before making my decision to homeschool Desty, I heard how easy, fun and natural it is from half the folks that knew I was considering it, and the other half warned how grueling and how much work it would be (I'm betting those friends had to deal with the district a lot...)  

Homeschooling Desty is, without a doubt, the most fun and fulfilling think I believe I've ever done! My driving principle in teaching Destiny is that life is a natural school, and living to the fullest promotes learning. Yes, I have to prepare, especially when I include Benny in our school, but honestly it is not a lot. And I'm so much more 'in-tune' with both kids now; that makes it even easier. And they love it! They want school into the evening!
Benny is still at his school, but last weekend he begged for homeschool...I think I've been 'teaching' every day for two weeks! And then, he caught a cold, missing Tuesday through Friday of this week. His teacher sent home some of his work, which he quickly finished, and I created some lessons for him. He misses his compadre, Sam, but it's been a fun sick-at-home four days. He really misses Sam! LOLOL!

When we are not sick, we are out in the world learning through experience and we are home creating. My friend called Desty's school a World School - it really is. Take a good look at the pictures throughout this entry. This is our school!  Everywhere!  My Destiny knows when to use a "Mama A" and a "Baby a". I was wondering how I'd ever explain that! To me, it seems so silly, at first impression, why there would be two of the same letter that are different. She thinks nothing of it! VWALA! - and the rest is a game! I'm beginning to think in Dr. Seuss verse ;-)
I just have to share one of the things I'm totally stoked about, for those of you who aren't Facebook addicts, and then I'll have to leave you on a sad note (after all, this IS part of my therapy! HA HA HA! ;-) 

Pen Pals! Destiny has three - all Dravet Angels! - one in CA, one in IL and one all the way in New Zealand! And, as of tonight, Benny has a Pen Pal in Australia, whose cousin has Dravet! (of course, he wanted in on the FUN, too!  

Now, comes my sigh...Destiny has her first cold in a long time - a simple cold, yet brutal. Seizures galore, choking, labored breathing, cognitive and coordination issues again. It's okay...I know that as long as we keep her from status epileptus, she'll probably bounce back as soon as the cold leaves. But it's painful to watch and relive. On her Diet, there aren't many decongestant options that are safe. She lacks the power to clear her nose. Today as she napped, we manually held her mouth open so she could breathe easier, guarding off another seizure.  I keep reminding myself, "This too shall pass..."

Wait! I can't/I won't end on that note! Watch this clip...  
This nice garden caretaker took my eager little girl in to feed the ducks! 

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