Field Trips and Girls Basketball

SCHOOL OF LIFE

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.

Glorious!!

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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PAC MAN vs. THE TAMINATOR!

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!...

PAC MAN

VS.

THE TAMINATOR!

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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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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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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Saturday Surprise

This is my blog, my story as a woman with a disability, as a divorcee, single mother, and so on. Basically, this is my autobiography of my life's evolution as of the date posted. I see professional blogs and I'm quite envious of the ease with which the author shares their honesty. (I should say that I'm usually glad I don't know the blogger because I wouldn't want to be a subject matter!)

My fear of being harshly judged for my thoughts, feelings and actions is dwindling as I gain more and more confidence in myself. I think about how difficult it has been in the past to hide certain decisions I have made, how much energy it drained from me, and the internal anguish and loneliness it caused. And how liberating it was to finally be able to tell people, and accept their support. I am done being ashamed.

This is my blog, gosh dangit! And that's what I'm gonna do! After all, no one called Child Protection when I let my 'medically fragile' daughter go down a Zip Line! LOLOL Sorry! ;-) The thought did cross my mind!

My point is: This is my real life!
--------------------------

Well, hmmm, where do I begin tonight? Once upon a time, I was told, "I'm positive, and so are you!" and my life was forever changed. The positivity that my doctor was referring to has turned into a 7-year-old boy, the Sonshine of my life and grey in my hair. He's in the second grade now, his body slightly more ill-proportioned with each passing month - which makes me happy and nostalgic all at once. Nowadays, you can expect him to be strutting around with a bright red Mohawk atop his ever-big head. Today we were spared the Mohawk.

Suddenly this child of mine is trying to convince me to home school him, alongside his sister. Hold on, my dear readers! - it's probably not going happen. I'm going to take the next few weeks to give him time to settle into his second grade class. I'm thinking that once he's settled and knows his place in class, he'll give up the idea. However, I will not refuse to evaluate the idea with him. In fact, I believe there's a great teaching lesson in this for both of us.

I can think of several pros and cons of teaching him myself off-hand. But I want to really think it through, determine if I have it in me to teach at two different levels...and not get a 'Benny break', and lose a lot of my one-on-one time with my Destiny. I'm feeling a bit stingy about that aspect.

And since Benny wants to try home schooling, we are going to have school next weekend and the following weekend to test the waters. He will be creating his own Pro/Con chart on the subject. LOL I'm thinkin' it will be a non-issue thereafter! ;-)

(I really like his teacher this year, so hopefully things will go smoother for him in the coming weeks!!!! Crossing all digits! ;-)

Ultimately, it is my decision based on what I believe is best for Benny.

Today we went and watched the new Winnie the Pooh Movie at Cinema Grill. If you want to take a kid to a kid movie in a family-friendly theater for a special experience (opposed to screen quality!), This Is The Place! And it's cheap, too! $2 admission, and then you order restaurant-style. We got a movie, lunch and dessert for less than the price of admission to a regular movie theater!

It tickles me to no end to hear my growing boy squeal with delight watching our Hundred Acre Wood Friends!

After the movie, we checked out the vintage car show in the same parking lot. It was pure Awesomeness! I really love suped up trucks!


Neither kid of mine could accept that our Chevy Town & Country mini-van is not nice enough to put in to show! It was hilarious! I made Benny ask this rough looking fella what kind of car he had...Benny came back to me, shrugging, "He says it's a caaar vet". I try not to laugh at my kids, but once in awhile, I just can't help it! So Benny kept repeating himself, and I couldn't stop laughing!

I decided I wanted even more cheap entertainment, so we stopped at a Outdoor World (comparable to Cabellas). For free we get a museum, an aquarium and a rock wall - as good as an amusement park!

This is my son climbing the rock wall...



Proud Mommy I Am!


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Desty's First Day!

Today was Desty's first day of her Kindergarten Adventure!!!! It was absolutely wonderful, I tell 'ya! We were scheduled to begin next Monday, but she was having trouble waiting, watching me create her curriculum, and I was having trouble because she was...Thus, we began! (Don't ask me when I'm gonna have time to continue my plan!)

This is Destiny playing "A-E Driveway Hop"!
She practiced her capitalized "A's", we talked about "Alligators", "Apples", "Airplanes", "Ants" and pronounced different "A" sounds. We're going to focus on the letter "A" for three days, then "B", "C", "D" and "E" for three days each, and then we will spend a week reviewing letters "A" through "E".

We began our rainforest section. Can you believe my daughter knows that birds and monkeys live in the Emergent, and the Canopy is the roof of the rainforest?! I didn't even know that until three days ago! On a 3 foot piece of banner paper, we are creating a rainforest of our own. Today, Desty and Buck began by making grass for the rainforest, trees and flowers. This is going to be a week and a half long project, and we are going on a couple of field trips to experience the climate and some of the creatures that live there.

Here's some Magic for you: We are awaiting the arrival of catapillers so that we can raise butterflies. The habitat was out on our kitchen table while Destiny and I were watching Pocahontas. Apparently, a butterfly landed inside of the net, and Buck quickly zipped it closed. He brought it downstairs to us, but I didn't notice our beautiful friend in it for a good half hour...At which point I screamed like......Benny (LOL) until I figured out what the heck was going on!

This is a cute video of Desty trying to set our new butterfly-friend free.Sorry about the rotation, ladies and gents!

When we wrapped up our school day, you'd think I broke Desty's heart. If she still feels the same about the end of lessons in eight months, life will be goooood! ;-)

"I'd rather die tomorrow than to live a hundred years without knowing you."

-John Smith to Pocahontas

My sentiments exactly....






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Location:Magical Kindergarten Day One

Big Decisions, Only A Mother Can Make

Last Spring, on May 21st, I sat through a four hour meeting, called an IEP meeting, at the school district. This meeting had probably two dozen people at it, and was all about my Destiny. The meeting was excruciating, confusing, and as far as I'm concerned, a room so full of buearoCRAP that I was suffocating. It was during the tougher times for my girl, when I felt her slipping away with every seizure, every fall, every word forgotten, every heat stroke. I was still working at the time, though my heart was elsewhere.

Destiny's advocates moved mountains for me that afternoon as I felt salt pouring into a wound much deeper than the one made by a hip replacement, or any pain I have ever endured. The school, the accommodations, set in place that day were absolutely necessary for Destiny to be able to attend Kindergarten this year, and for me to continue to work.

Weeks after Desty's IEP, I followed my heart, resigned from my job, embraced my children with all my heart, and took on the responsibility and administration of the Ketogenic Diet for my daughter, which has very literally brought her back to life, in many ways.

I am overcome with gratitude EVERY DAY for this good time the Diet is giving us! Maybe this good time will last forever - I pray selfishly every day for that too. However, if it does not, I do not want to regret anything. I am bound and determined to cherish EVERY moment possible with both of my Kiddos. Being very different personalities, that looks different with Benny than it does with Destiny.

That also means that I refuse to disable Destiny. To the contrary, I want this child to meet and experience the world where she is at - I want to capitalize her abilities, to feed her soul with love and confidence. I don't know, of course, but I'm choosing to believe that the higher she is on life, the smarter she is, the happier she is, the harder Dravet will have to work to bring her down.

Getting to the point!...

I have officially decided to homeschool Destiny for Kindergarten! I will leave you all to your eclectic array of reactions, knowing some will be harsh judging and some will not be surprised and even allow me the benefit of the doubt that I'm doing what's best for Destiny and I. And a handful of you are very relieved that I finally have the courage to follow my heart again and finalize this big big big big decision ;-). Either way, I love you all (especially my newly unmasked KE spies! ;-), and please stay tuned for many many more adventures of this BoulderMomOnWheelZ!

My boy starts 2nd grade tomorrow, and I really believe it'll be a great year! His school really went to great lengths to place Benny with the best teacher for him (& his best buddy!). I'm so excited for him!! I'm so proud of him!!!

Desty starts Kindergarten next Monday!



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