Advocating...

ad·vo·cat·e, ad·vo·cat·ing, ad·vo·cates. 

To speak, plead, or argue in favor of.   

     

Several years ago I was in a meeting with the school principal. I made a comment, a slip of the tongue, and said something like "I have been fighting for him for a long time". She responded with "we don't like to use the word "fight". 

Yeah, I'm sure they don't.

There are very few people who know the full background of my sweet Justin. Very few people who know that when he was young we had him tested for Autism, then Aspergers and so on. There are few people who know the countless days I spent waiting in OT and speech therapy offices. I don't retell the story of the teacher the kindergarten teacher that, very loudly, announced in the hallway at drop off she felt Justin was OCD; because he was picking at dried glue. I try not to share the story about the teacher who put him in the closet. Yes, I said the closet; it happened in preschool, when Justin was only 3. 

But isn't that part of advocating? Sharing your story to let others know they are not alone. 

I have been fighting advocating for Justin for more than ten years. I'm a little worn out, but my job can not be done quite yet. I'm starting to wonder if it will ever be done. I have visions of me calling corporate bosses to tell them Justin NEEDS his snack and that he MUST be able to bring his work home to complete. They won't want me to go down there. 

To me... advocating is directly connected to fighting. I wish it felt differently, but I always seems to be fighting with someone. The school, the insurance company, the doctor that wants to treat in a way I don't feel comfortable with. I have however learned, over the years, to not back down and choose my wording wisely because it could mean the difference between getting what your child needs and them getting the bare minimum. As an advocate, I think it's sad words can cost our kids so much. 

I have learned, the older Justin gets, the harder it becomes to advocate for him. With each added diagnosis, it gets harder to word your concerns in such a way that they don't sound like a bunch of excuses. School has to be the hardest... instead of a couple teachers, we now have seven. Keeping up with seven different teachers, in addition to making them understand, kind of sucks (or in proper terms... it's unsatisfactory)? 

My most valuable lesson in all of this has come over time. Time has showed me that it has ALL been worth it. Every bout of anger, every tear, every phone call and email sent has all been worth it. I've witnessed it's worth as I have watched Justin grow. I have witnessed how far he has come in spite of those who give up because he has been blessed by those who won't. I have had the chance to watch a child grow everyday that could have easily been chalked off to a behavior problem, and almost was, when all he really needed was a different approach and someone to care enough about him.


To be honest, I had hoped to hang up my advocacy belt soon, only I know I still have a long road ahead. Not nearly as long as Justin's, but I have to lay the groundwork for him now; and that's a big load to haul. All I can do is keep truckin along and pray with all my being that what I can do will be enough. I don't have any other choice if I want Justin to have a fighting chance. Hmm, there goes that "fighting" word again.

Thank you, from the bottom of my heart, to all of those who didn't give up and have been influential, to both of us, along the way.  

     

The Young and The Worn.The.*F*.Out...

Leighanna has had such a HUGE month! I, however, have just been along for my skills as a taxi driving cash machine with a little display board making and proud mommy on the side.

I guess I'll take what I can get.

I don't think I mentioned it here, but Leighanna made All County Chorus. There were only 6 students chosen from each school in the county and there was plenty of competition. She had to audition and she was so excited when she made it. These things are right up her alley.


My BEAUTIFUL daughter... growing up.



2011 All County Chorus

So for several weeks we had to drive her to another elementary school to practice. We were on a final countdown with only a week to go when I get a call from school. "Mom, my team won the egg drop. Now we go to Universal next week(at 7:30 AM on a Saturday) for the county competition".

BTW: I will need to stay after school every day next week to work on the egg lander.

Say wha??? NEXT WEEK??? You have chorus practice and your performance next week. AND I  am scheduled to work everyday and I also have to find you a black skirt. ACK!

Rule of thumb... everything falls in the same week.  



Now just in case you didn't know(because I surely did not), these egg drop competitions are big business. There are size, weight and materials rules. Oral presentations, dramatic countdowns, costumes and judges from NASA. Research based display boards based on the scientific method. If your lander lands on its side... you loose points. If you can't answer the questions from the judges... you loose points. 

Who knew its no longer just about whether or not you broke an egg!

That aside... I am excited to announce that Leighanna's team, "The Egg-vaders", won 2nd place overall in the county competition.

*Justin was scoping out the ideas from the other teams for next year. That's my son for ya!

Side note... this was an interesting display board.

Did the teacher not see the issue here??

In the mean time...(again in the same week) Justin had a science project due. I will post "The making of the "NASA Bird" next".

This was just one week. The rest of the month has been much of the same.

One more week... One more week... One more week! There is going to be some Mama tears, but I can handle it.

Oh... and Justin got a hair cut :) He told the hair dresser "my dads doing to KILL my mom". I'm not dead, but I warned him hours before he came home... plenty of time to get over it.

See how smart I is??!!??

Happy Sunday!

What's happening at our house...

I am so behind! That is the story of my life these days... er the last 18 months that is.

That's right~ it has officially been 18 months since D-day (Oh wait! It's been 18 months and ummm ~ 6 days... did I mention I am behind?).

Anyh0o, I just wanted to do a quick post just in case you missed me :) BAHAHAHAHAHA!

1. I volunteered to help during the JDRF Walk in Lakeland this past weekend. The Ack pack just walked a few weeks ago at the walk in Tampa, so I gave of my time instead.
Now you would think that most of the wonderful peeps volunteering their time would have great knowledge of what they are volunteering for right? NOPE!

There was this church group (God luv em!). Bigger fellows if you will :)
I am standing beside them at the check in table. They are chatting. One of then says "I don't understand why they would have all those donuts here. It's all that sugar that caused this anyways".
OH GOOD HELL!!

I think my eyes popped out of my head. Did I say something? DAMN SURE DID!
Me~ Actually sugar doesn't cause it at all.

The guy who actually said it and needed to listen walked away. However, one guy did stay and chat with me for a good 15 min. I appreciated that and I can only hope that he went back and smacked the other guy upside the head :)

I went through the whole spiel... autoimmune vs metabolism... does not make insulin vs does make insulin and does not utilize it properly... my son CAN and DOES have the occasional donut. You know the speech.
The guy that listened to my mini vent was super nice. I apologized for jumping into his conversation, but explained how the mix up between the 2 types is rather agitating to us T1 parents. Let's face it... we have enough issues without being judged (at least I do).

Other than that... it was interesting. I greeted lots of people. Passed out lots of burgers and called it a day :)



2. Yesterday I had an Endo appt. Nothing exciting. He thinks were doing good. Justin's a1c has consistently been creeping up... it is now 6.9 (not bad, but I don't like the rising trend).
He says that our higher numbers lately are more typical of a diabetic and that the lows are still honeymoon stage. When does the Honeymoon end? He did not change any of his dosage.

That was that!



3. I have not been able to find out any info about the art teacher. But I will say she has been disgustingly nice??? I am not a big fan of such nonsense!!!



4. I am ready to give away (for free) one 10 year old with a bitchy PMS type of attitude.
Please leave your name and address and I will overnight her immediately :) NO RETURNS PLEASE!



5. I LOST 7 POUNDS!!!!


6. I took me 4 days to recover from day 1 of 30 day shred. I just did day 2 yesterday. My body doesn't hurt AS BAD this time... I might try again today :)


7. I fell asleep in front of my laptop and missed Sunday chat :( That does not make me happy.
I feel out of the loop and sad.


I think that's about it...

My house was clean yesterday and today it looks like a tornado blew through. I guess I better get motivated to clean up the aftermath.

Happy Tuesday!!!

THE HOUSE! AND WORK! AND GRANDMA! ~ OH MY!!

I am SO.FAR.BEHIND.
I don't even think those words can describe how far out in the middle of nowhere I am.

My blogs... I haven't been able to keep up with my reading.

My FB... I am addicted. I think if I got anymore addicted id start snorting the letters off the computer screen! However, every day when I come home there are 350+ "most recent" updates and I just haven't had time to catch up with them all these last few days.

My house... ummm~ let's not discuss that :)

My work... this is a combination of things. 1. My non paying volunteer job: I am behind. This is a super busy week because of an upcoming event. SOOO~ lots of work ahead + I am already behind = GOOD HELL!!!!
2. My paying job: though the pay sucks... I still do it. It's a job. It's flexible. And I like it.

My Grandma... still in the hospital. Today was the first day that I didn't go visit. I am riddled with guilt that she is there alone. My aunt had to work today. I had a meeting(job # 1). My uncle will be stopping in after work, but the fact that I work tomorrow(job # 2) means that I will not see her then either. I feel bad... I feel guilty!

My video... thank you to EVERYONE who sent me photos. I am TRYING to get it done. I just had a small speed bump in the road. I will send that out A.S.A.P.


I feel lost. Out of the loop. It sucks!!!

Things I absolutely DID NOT do this week...

~I absolutely did not forget to stop at the store and get my hubby a desert to celebrate his birthday. Which means I did not run up there when he called to say he was on his way and I did not tell him I waited to cook the brownies for his brownie sundae so that they would be warm enough to soften the ice cream.

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~I absolutely did not have to stay up until 3am on Tuesday fixing the PTA budget that I absolutely did not screw all up last month.

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~ Then on Wednesday I absolutely did not have to stay up until 4am to finish up the typing of my kids science fair reports... I did not doze off several times... and I did not crack up at my hilarious wording errors because of my non lack of exhaustion.

I mean SERIOUSLY... who would say... "Why does loose gum loose it’s flavor?"

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~I absolutely did not paint new polish over my old polish because I have not been neglecting my toes and I am not in desperate need of a pedi.

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~My eyebrows do not look like Albert Einstein's right now.

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~I am absolutely not a bottled blond, therefore my roots are not way to long because I am

absolutely not completely neglecting myself.

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~I did not TRY to get out of going on Justin's field trip to MOSI (Museum of Science and Industry) even though I knew I had to go.

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~I did not eat Lays BBQ potato chips for breakfast.

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~I did not neglect to cook dinner all week because my hubby wasn't home for it. which means my kids ABSOLUTELY DID NOT eat Beef's, Beef's leftover's, McDonald's, Sonic and Pizza for dinner all in the same week. Since we DIDN'T do that... maybe we can eat out tonight :)

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~I did not have to start Justin's science fair project over again because it is not hot enough in the garage to prove that heat makes a difference in evaporation. (it's Florida.. the garage is always hot!)

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~Speaking of science fair projects... I absolutely did not steal an idea and then convince my daughter to change her plant project to a bubble gum project because I have a black thumb and can kill a cactus.

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~Because I didn't do the above mentioned... I also didn't use the post from Shark Bait to convince her how cute the NON-STOLEN project idea could be.

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~I did not send a little boy home because I could not deal with him running around my back yard SCREAMING "I hate you" to the other kids... I didn't have to do this because his parents actually watch him while he's outside.

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~I am absolutely not still sitting here watching Sponge Bob even though my kids are not still in the room.

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~I am sooo not writing this post to avoid house cleaning and laundry. ~I would N-E-V-E-R!!

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~I am absolutely not jealous that other D-bloggy friends(Joanne) live close to other D-bloggy friends(Laura) and that I have no D-bloggy friends that live near me in Florida to hang out with.

I mean seriously... I would never wanna hang out!

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~And I am not DREADING this year's holiday season... I really LOVE the holidays... I don't know why I would EVER do that!

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NOPE... I would NEVER! What did you ABSOLUTELY NOT DO this week?

Quote of the day...

You will come to know that what appears today to be a sacrifice will prove instead to be the greatest investment that you will ever make. ~Gorden Hinkley

Is October over yet?

Phew... October sure had turned out to be one busy month. I have a PILE of deposits to do for PTA that I have not gotten to because of training and Leighanna's birthday parties. The PTA's annual auction is in less than 2 weeks so I have been wrapping up the few donations I was suppose to go after. Justin's class basket is sitting here saying... "wrap me and turn me in".

It seems as if the list goes on for miles. ~Seriously

But, the big item this month was Leighanna's big 10... yep, my 4 pound preemie turned 10.

I brought her home on Halloween day 10 year's ago. I still have the Anne Geddes doll we borrowed the Lady bug costume from. She now sits proudly on the plant shelf in Leighanna's room. AHHH memories ~ I love them.

So Now shes 10. You would never look at her and know she was so little. I like to say that's because she was well loved :)
Here is Leighanna on her actual birthday last Friday. We always do a small treat on the actual big day with just the 4 of us...

The cake fits her perfectly :) lol

Then we had the family party... this year's was super simplified compared to most because I have been crazy busy. We just did some light snacks and a simple cake that Leighanna and her dad picked out...AND THEN...

There was the Halloween birthday bash/slumber party. This year I only let her invite 6 girls. (4 came) So all together we had 5 girls here. Last year there were 8 and it was a little nuts!!!

Daddy does not partake in such slumber party festivities (can't really blame him). So he took Justin over to Nonnie's house where they were spoiled as usual.

Us girls had a good time without the boys... we tie dyed shirts(my hands are still purple), decorated cakes, made bracelets and a fort, had a fashion show and watched Ghostbusters. Now, I do have to say... I don't remember Ghostbusters being a little "iffy" for 10 year olds... I guess I look at things differently now that I am a mom. I have not seen it in a while and completely forgot the part were the lady ghost is hovering over Dan Aykroyd and she unbuttons and unzips his pants... then all you see is his face in a pleasant way if you know what I mean.

All I could think is OMG... I don't know half of these girls moms and this is not good.

"COVER YOUR EYES GIRLS". Hopefully they won't discuss that part with their parents :)

Here is our fashionistas after 1 of their wardrobe changes...
Hope you all have a safe and happy Halloween...

Quote of the day...

"Any mother could perform the jobs of several air-traffic controllers with ease." ~ LisaAlther