Monthly Archives: March 2012

April is Autism Awareness Month AND Month of the Military Child

I’m over at the Autism Speaks Official Blog today talking about the complex issues facing access to autism care for military families and why HR2288 – Caring for Military Kids with Autism Act is so critical.  April is coming and there are so many ways to get involved in spreading awareness whether blue lights on your house or simply starting a conversation with someone and sharing what autism means for you and your family. 

“April is not only Autism Awareness Month, it’s the Month of the Military Child.  As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not.  I apologize in advance for the absurd amount of acronyms, but bear with me as I try my very best to demystify the whole autism-military thing.”

For the entire article, please find me on Autism Speaks HERE.

And thank you for being a part of this journey with me!

Rachel


Surprise! We’re Polygamists!

Last year on this day, I wished my husband a Happy 8th Anniversary.

Today I seek to do the same, only I’ve decided to unleash our skeletons from the closet and announce to all of you that we are Polygamists.

Yes.  You read that correctly.

No.  It is not another woman.  Or another man.

Nine years ago today, in a beautifully rustic stone forge built in 1757, in front of just twenty-two people and an Army Chaplain, I married the SGM and The Military.

Polygamy wasn’t previously on my radar.  I grew up Catholic, so it’s kind of a no-no.  But it was pretty clear that this was a packaged deal and I wasn’t getting the SGM without also making vows to The Military.

While the first several years of marriage tested SGM and me to our very core with deployments and unexpected parenthood and less-expected feeding tubes and heart surgery and autism, I don’t think The Military struggled with these life events as much as we did.

The Military did come with a dowry that sounded pretty great on paper.  Steady income, medical and dental benefits and life insurance.  Then there were the perks such as travel, military galas and ceremonies, and all the ibuprofen a girl could ever want or need.  In reality though, I am not the one who gets to travel and I can bet the SGM would pick better places to visit that do not involve terrorists.  Our Battalion doesn’t do galas, so I don’t get to dress up like a goddess once a year and get tipsy at an open bar.  Lastly, I pay for my ibuprofen out-of-pocket because I am a dependent not living near a Military Treatment Facility.

But I keep my vows to The Military despite the fraudulent dowry.  I don’t argue when SGM is called away to war.  I man the homefront when he is gone, whether for two days or two hundred.  I fix leaky faucets and take the air conditioners out of the windows in the fall and lug them up to the attic.  I bite my tongue on the telephone as much as possible so that he isn’t burdened by stressors at home such as I.E.P.s when his stressors at work are I.E.D.s.

Sometimes in polygamy, you are just the odd woman out.  After nine years, I am confident The Military has had a lot more say in how SGM spends his time but I am not jealous or resentful of The Military.  Remember, I signed up for this.

However, I do have a bone to pick with The Military on our anniversary today, and flowers and a card are not going to smooth things over this time.  I want OUR children to be better cared for whether one of them needs open-heart surgery or autism therapies.  Step up, The Military.  SGM and I have upheld our vows.  It is time for The Military to take a turn and uphold its vows to care for us in good times and bad and stop the segregation of medically necessary treatments for autism into ECHO where they are no longer available to us when SGM retires.  C’mon, The Military – Remove that arbitrary dollar cap on autism care that limits therapies to less than half of what is recommended by the American Academy of Pediatrics, the National Academy of Sciences, and the Navy and Army Surgeons General.

I want to grow old with both my SGM and The Military.  I want our service and sacrifices throughout our marriage to mean something more than idle promises to care for one another.  I want The Military to continue to care for our children after retirement as it claims to do.  Because even if retirement was the equivalent to divorce, The Military would still owe child support.  It was all part of the agreement we entered into when we forged this relationship.

And really, SGM doesn’t get to pick and choose which of his children he cares for, why should The Military?

We’ve got some things to work out, The Military.  Like all marriages, there have been some major bumps on this ride but I wouldn’t trade it for the world.  Let’s make this right for all of our kids, ok?

Happy Anniversary, SGM and The Military.

I love you both.

 

[One in eighty-eight military dependent children lives with autism and current military insurance does not provide adequate care.  Dependents of retirees, even those of Wounded Warriors, receive NO autism benefits.  Please show your support for HR2288 - Caring for Military Kids with Autism Act (CMKAA) at http://cmkaa.org.  There are three easy ways you can choose one-click support of this critical legislation.]

 


EPIC FAIL: Soldier in Afghanistan = Deadbeat Dad?

Deadbeat Dad? Or Deadbeat Country?

Tell Congress to grow a pair and FIX. IT.

Sign the petition.


Random Acts of Drive-By-Awesomeness

It’s Friday night.

I have had an unusually serious go with depression and anxiety this week.  To top it all off, just when we get Crappy Transportation Company straightened out, SGM leaves for a long drill weekend.

It was work to engage with my kids this afternoon.  But in the end, some snuggle time with The Boy reading some Dr. Seuss together worked wonders.  So did the few moments RM asked me to come play with her and decided she needed to test me on my sign language.  Like for real.  “Mama.  Sign ‘kitchen’, Mama!”  It’s a good thing I still know at least half the signs she does.

After dinner and an attempt to get RM to use the potty (which resulted in a stopped-up shitter and actual shit on the floor) I poured a glass of wine from a new bottle I thought I would try.  This is the enthusiastic picture I posted on facebook:

Blerg.  It tasted like the name.

Oh well.  I actually dumped the bottle, which is something I never do.  It was that distasteful.

It’s not like I was ready to jump out the window (we live in a ranch) but I was feeling a tad bit defeated.  I cleaned up the remains of the day that littered the kitchen, loaded the dishwasher and tried another round of taking RM to the potty.

I was just getting RM through the routine of brushing teeth – “Wa!  Do!  Fee!  Foe!  Fie!  Ih!  Evan!  Ay!  Nie!  Tay!… Wa!  Do!…”  You get the idea.  Like many of her rituals, we need to brush teeth the same way every night, counting to ten with every section of her mouth that is scrubbed.

The doorbell rang.  I was startled.  But I was also in mid-brushing with RM, so by the time I got to the door a mysterious minivan was driving away and I looked down to find this:

It was a Drive-By-Wine-ing.

As I stood there in a complete daze, in shorts and a tank top, no makeup and piss on my socks from RM’s attempts on the potty, it just wasn’t computing.  I felt like the guy in the Nyquil commercial praying for a Better Looking Tomorrow.

But this was becoming a Better Looking Night Tonight for sure.  But I still had no idea whodunnit.  I posted this picture on my facebook page:

I wrote underneath it: “Cheers, Phantom!!! OMG THIS WINE IS AMAZING! Thank you so much. Your timing and thoughtfulness are divine. I was having a rough go this week for sure and a real bummer that SGM is not here. Again, thank you :0)”

The Phantom eventually fessed up.  And I was taken aback.  Speechless.  I will only say that this woman and I have never spent time together and this gesture of hers was so much more than a bottle of wine for a fellow mom – it was a reaching out with these kind words attached, “You have had an amazing month, you deserve it!”

Thank you, Phantom.  You have restored my faith in everything simple and kind.

Cheers to you, Phantom!


Crappy Transportation Company – Finger Lickin’ Good Times

This is PART THREE in a gripping saga about Crappy Transportation Company.  If you are new to the story, please read THIS, then THIS.  Thanks.

So.

After using an empty, greasy Dunkin Donuts bag to smoosh away the CHICKEN BONES from under RM’s seat and then securing her tightly in the safety straps, I kissed her and squeezed her and said, “Have a great day at school, Beautiful.”  I closed the van door, said a rapid Rosary and waved goodbye.  At this point, Mom-Alarm was not completely triggered where I felt the need to start a complete melt-down by ripping RM from the van.  She would not have been agreeable to that scenario.  I felt it was best to rock on and let her go, knowing it was Game On with Crappy Transportation Company.

I crossed the street as the van pulled away to tell SGM what I found.  He had pulled out of our driveway to head to work, but had stopped at the neighbor’s for a brief moment of male bonding.  All I had to say to him was, “CHICKEN. BONES.”  He knew instantly by the look on my face that this transportation bullshit was about to come to an apex of sort.

As I walked back over to the house to start the ball rolling on that, SGM headed off to work.

Hang on to your panties.  It gets better.

SGM called me about an hour later after he reached the armory.  “Um.  You’ve notified SpedHead, right?  About the CHICKEN. BONES. Right??”

“Oh, you know it.  Why?  What’s up?”

“Well, after I pulled away I ended up behind the van at the light and.  Um.  Well.  Chicken Lady was not paying attention.  AT.  ALL.  The light turned green and the car in between us had to honk to get her to move and it looked like people were moving around inside the van.  So I followed them for a ways, and Chicken Lady missed the green at three more lights.  She just was not paying attention at all.  Then it looked like there were bags being passed back and forth.  It was ALL. WRONG.”

I hung up with SGM.  There were no words to describe my rage.  I had already informed the school and the Assistant SpedHead that I would be driving RM until the entirety of this situation was resolved at the meeting the following Monday.  There simply was nothing else I could do but wait until then.

Because it is never easy dealing with these schmucks, they scheduled the meeting for Monday afternoon at the exact time that RM and Boyfriend needed to be picked up at school BECAUSE THEY HAD NO TRANSPORTATION.  So it meant that out of the four of us parents, one needed to miss the meeting in order to pick up the kiddos.  I volunteered to get the kids.  I felt that SGM and Boyfriend’s parents who have dealt with our district for several years had the most to offer up.  I also didn’t think we could scrape together my bail money should Crappy Transportation Company say some crazy shit at this meeting.

In the end, Crappy Transportation Company never showed to the meeting.  Interim Superintendent was extremely reasonable and made it clear that all of our concerns were valid and this was an easy fix in his eyes.  You think?  The district would inform Crappy Transportation Company to reinstate Miss Wonderful as monitor, New Driver would be the same woman who previously served as Boyfriend’s monitor before RM was on the route (yay!) and we would get the yellow van back and the afternoon route would accommodate dropping off RM before Boyfriend.

Problem solved.

RM and Boyfriend are happily riding to school together again.

 

 

 

 

 

 

 

 

 

 

 

 

It only took twelve adults fourteen days to do it.

Cheers, My Friends.

I’m headed out for some wings.

 

 


Crappy Transportation Company – Part Deux

If you’re just joining us, please read yesterday’s post HERE.  After that first email I sent to SpedHead on Tuesday, February 21, I received an unusually speedy response that afternoon from her that she would be looking into the matter and that all emails would indeed be entered into RM’s school file. 

Up to this point, I had been prepared for a few snags in getting this new transportation scenario straightened out but I hadn’t worried for RM’s safety – yet.  The next morning, the same van arrived to take RM to AWESOME AUTISM SCHOOL as I expected.  But what blew my mind was what I found when I opened the side door to put RM in her seat.

*****

Good morning, SpedHead

I am beyond words.

RM’s van arrived this morning with the same Nameless Driver and Nameless Monitor.  But instead of the driver’s granddaughter, now there was a boy between 10- and 12-years-old in pajamas holding a full breakfast in his hands sitting in an open seat where yesterday held Boyfriend’s car seat.  As I placed RM into what I thought was the same car seat she rode in yesterday (that I struggled to readjust for her yesterday), I found that the seat had been readjusted once more and no longer fit her properly – again.  As Nameless Preteen Boy moved to the back, Nameless Monitor pulled Boyfriend’s car seat out of the back row to make room for Nameless Preteen Boy and placed the car seat where Boyfriend sat yesterday.  But the seat looked more like it was set to fit RM.  As I was attempting to strap RM in and fix the seat height on the other side, I looked down to see half-eaten food on the van floor – to include the bony remains of a chicken wing.

[I pause here mid-email to say to my readers – WTF?  CHICKEN. BONES.]

There was a ton of trash around the floor and a receipt of some kind tucked into the side of RM’s car seat cushion.  RM still mouths things and is still very much at risk for choking.  Not only am I disgusted by the condition of the van but I am reeling from the lack of safety regarding properly maintaining RM’s car seat and leaving chokables within easy reach of her.

I will be picking RM up from AWESOME AUTISM SCHOOL this afternoon, but I expect these issues resolved.  Please notify me when there has been an appropriate transportation plan put into place for RM.

Once again, SGM and I request that this email become a permanent part of RM’s school file.

Thank you, SpedHead –

Rachel

PS

I will now refer to Nameless Driver as ‘Chicken Lady’. Mkay?

*****

Here’s the next volley by the BOE:

Good afternoon Mrs. Kenyon,

I am writing in response to your request for a meeting this coming Friday in regards to concerns with RM’s transportation.

After reviewing the emails the transportation concerns are:

  1. staff changes
  2. vehicle changes
  3. car seats
  4. bus route

Please let me know if there are any other transportation related issues you wish to discuss.

Thank you in advance,

Assistant SpedHead

*****

By now, I am just annoyed.

Hi, Assistant SpedHead,

Thanks for getting back to us.

You have included all of our concerns regarding transportation.  We’d like to note in advance that should Crappy Transportation Company choose to reinstate the same monitor, Miss Wonderful, that would be a step in the right direction.  Not only would it give RM and Boyfriend some stability in the process, but she is a phenomenal young woman who has taken a lot of initiative in understanding what works for the kids.  Outside of that, her presence on the route provides a measure of relief in the area of liability for both that of the district and Crappy Transportation Company.  We trust her.  She is knowledgeable and on top of things like proper seating, safety and van behavior.

Thank you,

Rachel

*****

Here’s the district’s attempt to squirm out of a face-to-face meeting with us and Boyfriend’s parents.

Good Morning SGM and Mrs. Kenyon,

In regards to transportation related concerns which arose this past week, the following updated information is being provided:

1.      Staff changes- As of Monday February 27th, the driver assigned to the route will be Another Stranger.  The monitor, Miss Wonderful, will be back on this route as previously assigned.

2.      Vehicle changes- The yellow van that was typically used for this route was in for scheduled maintenance, necessitating a change in the vehicle. The original bus is scheduled to be back in service on Monday February 27th.

3.      Car seats- The car seats (APEX 6500) that have been being used will be back in the vehicle for Monday February 27th.

4.      Bus route- The bus route is determined by the location of the student’s home to provide for efficiency.

Please feel free to contact me with any questions and/or concerns.

Respectfully,

Assistant SpedHead

*****

No.  You’re not getting out of this meeting, Lady.  (I should note that Assistant SpedHead was RM’s in-district Speech Pathologist for nearly two years, who also fought us for 14 months that RM even had ‘autism’.)

Hi, Assistant SpedHead,

This is a good starting point for the discussion on Monday at 2pm.

Please advise Crappy Transportation Company that we will not be putting RM on the van on Monday the 27th pending working out the remaining details of the plan to move forward.

It is a great step in the right direction by reinstating Miss Wonderful as the monitor for our route.  However, if the proposed driver is Chicken Lady that drove RM at the beginning of this week, then that is not an option.  SGM would be happy to describe in more detail at the meeting what he witnessed while following the vehicle with RM on board.  It goes well beyond the cleanliness of the vehicle.

We look forward to meeting with everyone on Monday.

Enjoy your weekend, Assistant SpedHead.

Thanks,

Rachel

*****

TUNE IN TOMORROW TO HEAR WHAT SGM WITNESSED CHICKEN LADY DOING AS HE FOLLOWED THE VAN… AND READ THE EXCITING CONCLUSION TO THE ‘CRAPPY TRANSPORTATION COMPANY’ SAGA.


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