Our Vacation As Written By B

We went  to the beach. We stayed in a tall building that had a lazy river, and then another pool where I got to jump into like 8 feet deep. It rained some days too so we couldn’t get onto the beach. I had some fun with my sister even though she would bug me sometimes.

Mommy asked me what I liked about our trip. So this is what I told her to write.

What I Liked About Vacation:

  1. Night swimming. “Night swimming” is when you go out at night and swim. It’s fun because the sky is dark and you saw the moon and it was lighted up. The water was both cold and hot. The lazy river was definitely colder. Daddy didn’t enjoy staying in the pool that night and Mommy definitely didn’t go in.
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  3. Beach. I got to dive under the waves. I collected lot of seashells too.
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  5. We went to the gaming pizza place. We played some awesome games and I got some cool prizes.
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  7. I got to take some pictures of railroads on the way back from vacation. Daddy even stopped the car in one town so I could get a nice picture. I showed them to Grandma when she came home from her vacation.
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  9. Water park. I got to go one of the coolest slides. It was like eight feet tall and then arms crossed and like the slide you couldn’t even see your bare hand it was so black.Daddy called it the blackout slide. There was a white one that you had to be all crossed too.There was a chute one too. There was one Mommy went on too but she hated it. I refused to ride any that I had to use an inner tube like the one that looked like a big toilet bowl.
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  11. I got to jump on a big trampoline like a big pillow. It was more than three feet!
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  13. I liked the Upside Down Museum where I played a lot of cool things. But I didn’t like the rope course where I got up high and got really scared. But the big Lite Brite (Mommy and Daddy said they played with a small one as kids) was neat.
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    – B

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Is This Thing Still On?

So, er, hi.

Yeah, it’s been a while.

Like, yeah, months.

Seriously, there are reasons.

It’s not for lack of trying. There are days I want to post, but something – ANYTHING will get in the way. At work, any social media is verboten on the computer, and working by cell is very limiting. By the time I get home (dinner, homework, baths, etc.), I’m too damn tired. Or there’s a Real Housewives of Some Rich Ass Place that allows my brain to shut off and turn off from any other form of “real life”.

The weekends fly by between sports (oh yeah, BOTH kids played some sort of baseball, and Diva does gymnastics), errands, and maybe a few winks of sleep. I even get some laundry washed and perhaps put away. Clean clothes trumps the blog, hate to tell y’all that.

Or, I sit to start typing, and inevitably have to get up and referee one of the gazillion arguments the kids have over some “important” thing. Like, oh, which toy makes the loudest noise. Why one kid has the blue push-pop and the other has pink. Or perhaps they like to make our first floor the Indianapolis 500. Who knows – each time they make it sound like there are 20 kids, not 2, in my house, by the volume of their voices.

However, I will say that it’s been busy. There have been some really neat things that happened, some crappy things that have happened, and some “meh” things that have happened.

One of the biggest things is that B is on the DD Waiver List for Virginia. [Note: I write “DD Waiver” but the official title is The Individual & Family Development Disabilities Support Waiver (IFDDS)] This is a different Medicaid waiver from the EDCD Waiver which we were denied back in January. However, this was not without drama as well. We had to drive to Harrisonburg, VA (2 hours one way thank you very much state budget cuts) for a 30 minute screening. Yeah, that’s what you read. Two lovely women met with us, asked us questions (to determine levels of functionality for B) and sent us on our merry way.

On the way back, our van met an untimely demise – we were involved in a car accident. We are all fine no worries! However, B was definitely freaked out – the airbags did deploy, sending plumes of dust throughout the van – so he clearly thought we were on fire. After the first responders arrived, we got a fun ambulance ride to get him checked out (safety first!). I’d like to say we were “spreading autism awareness” that day in the county, lol.

Again, we are both fine…the van did NOT make it, sorry to say. We had to say goodbye and now we have a new car which both kids have gotten used to.

Anyway, like I said, B is officially on the “wait list”. What does this mean?

Well, the DD Waiver has “slots” that are funded by the Virginia General Assembly. During sessions it’s debated about how many “slots” will open on the Waiver.  Currently, it’s a first come first served waiting list – but that may be changing.

During the last General Session, as The Arc of Virginia’s Policy Blog highlights, notes:

  • “The budget bill retains the funding required by the U.S. v Virginia Settlement Agreement for 450 new I/DD Waiver slots for individuals on waiting lists and in Training Centers. These slots will be available beginning July 1, 2015. These slots were included in the budget passed by the 2014 General Assembly and remained in the Governor’s proposed budget this year. The breakdown of these Waivers is as follows:
    • 325 ID Waivers for individuals on the ID Waiver Waiting List
    • 40 DD Waivers for individuals on the DD Waiver Waiting List
    • 85 ID Waivers for individuals exiting Training Centers
  • The budget bill does not increase funding for I/DD Waiver slots.
  • The conference committee report eliminates the Day Support Waiver Redesign language from the Governor’s proposed budget bill and eliminates the 200 “Building Independence” Waiver slots which is likely to result in delaying the implementation of the redesign initiative by The Department of Behavioral Health and Developmental Services (DBHDS). (301 #5c).”

At this rate, we are talking, literally, YEARS, on the waiting list. Which is why originally I was so depressed about the process – B will most likely not see any fruition of my efforts until his teen years. But, I guess if something is out there – one must try, no?

We have selected a case manager – Moms In Motion – who I actually met at last year’s Surfers Healing event.  This past week we had our first meeting which went well, considering there isn’t much to do. We need to work on qualifying B on Medicaid, but it’s ideal to do it on his income, and not on ours (for obvious reasons). I did get some new resource leads, which is encouraging.

And, of course, we have nothing but time, right? Time to work on these things, I suppose.

If after reading this, you are still wondering about applying for the DD Waiver (in the state of Virginia) – consider checking out The Arc of Northern Virginia for a handy step-by-step guide.

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Three Cheers for Awareness!

Heh.

So April 2 has come and gone.

While I loved looking at the blue, I’m reminded that it’s not just about blue lights. Or blue shirts, socks, whatever. Or even blue puzzle pieces.

It’s the AAA – Awareness, Acceptance, and Action. Maybe Advocacy for kicks.

Anyway, there are some that decry the color and the marketing campaign. I get it. Even this year, after dealing with B’s issues in school and getting denied for one waiver really have worn me down. Even getting on the screening list is disheartening – I will have to take a day off work to take B to Harrisonburg for the screening.

Harrisonburg is a little more than 2 hours (interstate) away. There used to be a closer one but, shocker, budget “cuts” closed that one. So, yeah, there’s some “awareness” right there.

And what’s more – this doesn’t get him the waiver. This gets him on the WAITING LIST for the mother bleepin’ waiver. That has thousands of people on it. Years, people…YEARS. So maybe Governor McAuliffe can use some “awareness” to do some “action” on that, maybe? I mean, you signed the ABLE Act, and commuted Neli Larson’s sentence.

Meh, we’ll see.

Anyway, I don’t need to wear blue to show my true colors. It’s here every day, whether I blog here, tweet there, or whatever. I have nothing against “Light It Up Blue”, in fact, I participated in it before.

But this year I feel a little jaded. Comes with the territory you know. Many say that without awareness we cannot move forward. Well, for golly sakes, how much more awareness does one need?

Anyway, I love this Seinfeld clip that reminds me of not just Autism Speaks, but other organizations that are also marketing machines. Enjoy!

Posted in Autism Awareness, Blue, Snark | Tagged , | 4 Comments

This Is Forty.

It’s time.

I’ve climbed to the top of the hill – and now all I can see is the downhill ride.

Melodramatic, no?

Though I harbor some feelings of sadness and resentment.

Yes, I know forty is no big deal, technically. Lots of time left. Lots of memories to make and treasures to cherish. And many people don’t believe me when I say I’m forty. But I feel it. I can’t help but feel…stuck. Stuck in a pile of mud between my son’s diagnoses and my own.

#BirthdaySelfie #OverTheHill

#BirthdaySelfie #OverTheHill

Today I took B back to his old developmental pediatrician. Dr. P used to be at Children’s but then went into private practice (with the hated word: self-pay). But now, she accepts our insurance and got us in in relatively quick turnaround. We had a very tiring yet productive appointment. A lot has changed since she had seen him – some good and some not so great. All I know is that B showed his “true colors” at the appointment, which is a good thing, since there are days that no one believes me at some of the things he does.

Such as: flopping on the floor, holding bad posture, continuously debating over simple requests, inattention to simple detail. You know the basic ADHD nightmare.

Also this will help with (finally) getting him on the DD Waiver list for the Commonwealth. As you know, we were denied the EDCD Waiver, so this is the only other step. Any documentation will help with our paperwork.

After his appointment I had to go to my endocrinologist. I have struggled with a hypothyroid condition, which got worse over the past few months. I have been tweaking my own routines, but to limited success. While my levels are better, I don’t FEEL better. I still feel sluggish, tired, and downright cold.  And old. :)

So, that’s how I started my fourth decade. A sick day off from work for two appointments, then to attend to B since we are stuck in (yet) another snow day from school.

Wooooooopppeeeee! Have some cake on me!

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