Sunday, April 22, 2012

Hola Cabola!

Ahhhhh.....the sweet, sweet sun. Mr. Golden Sun I love the freckles you place on my W's nose, the farmer tan you gave R, the way you highlight B's little haired head, and how you leave a little bit of your gold on me too!

Cuban Golden Sun is even better when it comes with sand between my toes and a Pina Colada in my hand. Ahhh.....

Friends, I shall give you a few pics of our trip while I go attend to laundry, put boys to bed and prepare for the real world which invades tomorrow.

And as Bup would say, "Hola-Cabola!"
My Blue Eyed Bup. Long sleeves for maximum protection.

Happy, goofy boys. A blessing when it takes place and always deserves to be captured.

Oh! The beautiful waters off the Varedero Coast.

Sunny W.

See boys? Auntie A and I always hung spoons from our noses and it drove Grandpa G bonkers!

Crack me up! We truly are a special family!

Handsome Hubs...all rosy glow in his happy vacation shirt purchased on our honeymoon....a few moons ago.

Wednesday, April 11, 2012

ADHD Edcuation

Grade 1.

Regular school.

One which we chose because of the Principal's affinity to care for children with extra needs. It was the last one on our list, but the Resource Leader (RL) and Principal surprised me. The accommodations with in the school include:

  • Break Out Rooms - for body or mental breaks.
  • re bounder trampolines
  • yoga
  • some kiddos keep a little lego at his/her desk for a quiet fidget/manipulative
  • afternoon snack & physical break
  • etc, etc.
Well....the principal retired. 
Strike 1.

The RL is....administratively overloaded? Detached? 
Strike 2.

W struggles with a couple of issues at school. 
Attention....not just because of the ADHD but because he is bright, bright, bright...and therefore bored, bored, bored.  Which gets him into trouble because then he doesn't want to make any effort as it's "boring." 

As I volunteer twice a week, I am able to witness first hand W's classroom behavior, interest, etc.

So, naturally, after speaking with his teacher (whom I adore! She really makes an effort to understand W and accommodate him), my next step was a meeting with the RL. 

After hearing my concerns.....

....she recommended he transfer to a different school!  " I don't like to send kids away, but...."

The Science School as his interests are science and humanities based aaaaaaaaaaaand 
..."you have to pick your battles. Is it really important that printing/handwriting being strong? We have kids use electronic devices rather than printing" 

Needless to say, I was stunned. Silent. Cause sometimes I need to process my answers so that they are appropriate and not right off the cuff/heart.

Now let me explain we have not been in the RL's office weekly or even monthly.
W's Key Teacher has been fantastic. 

But W has ADHD and I needed help in how to engage and interest W. This is an ADHD challenge not a subject challenge.

Second meeting of the year and her hands are washed of W and it's recommended he go elsewhere next year?


Sooooo...........I fired off a long, heart-felt, factual based email to the RL, Principle, and Key Teacher explaining what ADHD is, does, and how school will always have challenges for W and that as his mom I will ALWAYS advocate for him and by the way....this, this, this and this is on his IPP and it is not being met, so please do it now.

We'll see what comes of until then.....GRRRRR! Momma Bear is here!

Tuesday, April 10, 2012

TSC Tuesday - Red, red Facial Angiofibromas

Bups sweet face is marked with the butterfly markings of facial angiofibromas. One of the many markers of TSC.

It's been noticed by myself and his teachers that during or after seizure activity, these tumors are so prominent. They are red, and even more raised.
Also, they seem to be spreading.

When R is sick, feverish, under the weather...well, there's no hiding these little bumps at all. They just jump right out!

Any TSC mom's find the same? That during and immediately after a seizure the FAs are very obvious?

R's poor little face. Makes me sad and want to kiss him and scrub him and lotion those sweet cheeks until they disappear.

 If only it was that easy....

Sunday, April 8, 2012

Easter Blessings

Easter....a celebration of spring, bunnies, chocolate and new beginnings. Life. That's what it means to me.

Our family has many blessings to be grateful for this Easter. Funny how "good health" is the first that comes to mind. Even though we have health concerns and challenges all the time with TSC and ADHD resting in our home, I still am grateful.  I guess it's the little things. Even this Internet and this blog.
It has allowed me to connect with people I otherwise wouldn't. Far away friends. New friends. People that life has versed with experience and compassion as they too have children or friends or family with similar experiences.
Laughter. Can there be a bigger blessing than laughter? It lightens our load...if only for a minute.
Each other. Family. Friends we have chose as family.
And oh yes. Chocolate! And sometimes wine!

Today was a quiet day for RWB. After an Egg hunt and listening to Bup who was the first up begging to go outside and search for eggs, shocked that there were tiny paper ones left on the stairs, finding an egg on the steps, and chatting away to himself. After the search and devouring of the few treats we were off for a restaurant served breakfast. Now that's a treat!

Then the Hubs was off to work. A 10 hr drive and a 5 day shift. A short stay.( One day I'll blog about being a Married Single Parent. One day.....)

Bup is under the weather with a fever, runny nose, bright bright facial angiofibromas (they flare when he's sick or seizing)  and unfortunately a wiggly hand seizure this morning. But he's happy (enough) and slept and slept the day away. Tired. Sick and seizurey...always equals tire.

Bup catching a rest in the sun.
Then there's W. Somewhat content to stay home with me, watch movies, play a little wii (they finally earned it back!) and just hang out.
W having a rest with Dad.

So, as this Easter night comes to a close, I am grateful despite all the "little things" that are abound in our life because that's just the way it is. There's always stuff and today I'm just grateful for life, this journey, that is filled with stuff.

And....I hope you are too.


We are farmers!
I can hardly wait to introduce my boys to "the land". Feeding chickens, pulling weeds, raising their own food, petting rabbits...if they can catch them!
Ahhh...spending time out doors, playing, running, getting dirty, finding bugs, etc.

It was so exciting to receive the acceptance email from a local CSA farm accepting us as part of the share this season.  Fresh, organic produce and other farm goodies weekly throughout the season. Until the growing season provides some harvest, we will spend time at the farm helping out. The first work day is on May 4th.


Did I tell you that already?
I just think the boys will love being outdoors not to mention spending less time at the supermarket and knowing the boys are eating healthy produce.

So be prepared, I'm sure there shall be some interesting CSA work stories to come as well as recipes trying to use a lot of rhubarb.

Happy Anniversary Hubsy

Does that mean the 7yr Itch is on it's way?
LOL ~ I doubt it!

If we can successfully withstand the health trials, work changes, family stuff that our marriage has experienced over the past few years we can handle anything!

I look forward to many more years with my Favorite Husband. There's no one else I would rather share this marital and life journey with. He's funny and kind and compassionate and stubborn steadfast and loving and just sweet. I love Sir Hubsy with all my heart!

Friday, April 6, 2012

Hello Chickies!

It's "Sprinter" here which means that as the tulips, hyacinths, daffodils and other fleurs are poking their green fingertips through the soil in my front flower garden, the snow keeps falling every other day, the Easter Bunny is twitching while waiting to hide eggs, and the palm fronds are being woven into crosses for Palm Sunday and Easter weekend.

 I loved getting those crosses at church when I was a kid!

What are you doing this weekend?
Family? Friends?
Dyeing eggs, hiding eggs,..
Wearing bunny ears?
W has adored this little Easter book since his 1st Easter. 

We are not big on chocolate or candy....I LOVE it as do my boys, but really, less is more in this inside "Children of the Corn"s baskets and eggs they will find:
hot wheels car
nut or two
little fuzzy chick
little fuzzy lamb
marble with a bug inside
seeds to plant
and something else...but I'm not sure yet!

Tonight I blew out three eggs. It's been YEARS and YEARS since I did this and holy dinah I thought my ear drums were going to pop!! Anyway, three was enough, so after boiling a dozen eggs the trio of boys dyed them volcano style. Even the Hubs got in on the action to create a one of a kind egg. (Can you believe as a child he NEVER made Easter Eggs?! Gram!)

What treats will your family enjoy this weekend? Any unique Easter traditions to share?
Do tell!