So, it’s not all sunshine, roses and unicorns flying out my butt.

I am republishing this post from February 21, 2010 for two reasons.

  1. I think it is pretty darned funny with almost a year of separation from the incident, and
  2. The company that takes the photos is still, almost a year later, trying to convince me to buy the photo from that visit! I’ll add the photo at the end.

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I try to focus on the positives here though I do let loose with rants from time to time ((if you’re new here or a first time visitor…check out the School category, it’s where I have posted most of my stroke inducing rants…oh dear lord I just re-read some from 2008 and it all still makes my blood boil!)). When talking about Monkey I always, always, always list the ways in which he rocks, the funny things he’s saying and the huge strides we see him making. Who doesn’t prefer to rave about their kids?

But we still have those moments when we just want to lay down where we stand and quit.  Knowing that we are going to have these moments for the rest of our lives is just *sigh*.  We had one on Friday.

Last week was school vacation week and, for a variety of reasons, we managed to do nothing.  I finally put my foot down and insisted that I get off ONE of the days that I had been scheduled to take.  Naturally, Friday dawned with an amazing array of utterly ridiculous work issues that I was dealing with on my BlackBerry and getting progressively more angry over.  I finally, not so graciously, told them they needed to just deal on their own…I was out of coverage…really!  It’s good to start outings with a positive attitude.  Ahem.

So The Plan (dundundun!) was to take the train to the Aquarium.  TRAIN!  TRACKS! PENGUINS! everyone/I agreed it was genius.  15 minutes on the train and Monkey decided he was “all done?  Allll done?  ALL DONE!!!!!!” but we hadn’t even crossed the city limits.  *BIG GRIN* just for the b*tch staring at us from across the train!

Once we got downtown we had to decide whether to walk the last 15-20 minutes in the cold wind or take 2 more trains and walk 5 minutes in the cold wind.  Monkey had bounced back!   He was eager for another ride on a train so we took the 2 trains and it was fine.  Then we got off the escalator, at street level, and Monkey said… “Grampy?  Home? DOGS?” in that voice.  You know, that voice that means the day is over, give it up, go home…he is done.  Blah.

Screw that.  We’re going to see some damn penguins.  We had to wait in line for tickets and Monkey was a mess.  Great!  Then some crackhead insisted that we needed to take a picture!  A souvenir of our lovely trip!  That you can buy after your visit!  She got one shot and a “No, we’re done.” when she started squeaking a fucking WHALE in our faces to get Monkey’s attention.  He promptly went limp noodle, of course.  OMG.  And we hadn’t even bought the tickets yet!  Are you screaming “JUST GO HOME ALREADY!” yet?  You should be.

$55 later we had 3 tickets in hand and we stopped to take a deeeeeep breath by the harbor seals.  Or “WHALES!”  Whatever.  He calmed down.  I calmed down.  Duhdee was studiously avoiding all eye contact with me…I wonder if I had my crazy eyes on?  Huh.

Anyway! Through the door we go!  Hand stamp?  Check!  Bathroom break?  Check!  8 billion other crazy ass parents each with their perfect 2.5 kids?  DOUBLE CHECK!   We’re having a good time now!  Monkey?  Not so much.  He was, once again, stuck on the “Grampy?  Home? DOGS!” channel.  I wish it came with a mute button.

Fortunately, the penguins are right inside the door.  We were able to get him a relatively undisturbed viewing location and once again…calmed down.  Then, after 10 minutes or so, someone (*cough*Duhdee*cough*) suggested maybe we could go look at other things.  Fool.  He was happy-ish…and most certainly not whining…why MOVE?  But we did.  Aaaand the “Grampy?  Home? DOGS!” channel came on full blast.

We somehow made our way to the top of the big tank, dragging our Monkey (and tails) behind us, so we could look at the turtle.  And a creepy ass eel.  And a lot of other fish and sharks that I couldn’t really focus on because I was holding Monkey up over the half-wall (that he couldn’t see over, way to design for the kiddies, guys!)  and trying not to drop him into a 3-story, shark infested, tank…with barracudas.  Good times.  But!!  He stopped whining!  He relaxed and laid his head on the half wall, bending my back in ways it was never designed to bend.  Even if it meant needing a wheel chair to get home, I was NOT MOVING HIM.

Eventually, though, I had to.  My back was screaming, he’s a big boy! As soon as his size 12’s hit the floor…do you just want to guess what happened, because I’m sick of writing it.  We skipped 2/3’s of the Aquarium but at that point I could not have cared less.  I feel confident that our fish-to-dollar ratio was reasonable even if our dollar-to-minute ratio was not.

Then we got back on the trains…all 3 of them…again and Monkey was “all done?  Allll done?  ALL DONE!!!!!!” for most of it…I think.  I may have entered a fugue state ((FYI, I use these random words just to make Duhdee look them up in the dictionary)).  We finally dragged our thoroughly exhausted behinds through the front door so Monkey was HOME! and could see GRAMPY! and the DOGS! but instead of being, you know, happy…he burst into tears and had a fit over the fact that I was NOT WEARING MY PAJAMAS ALREADY AND WE’D BEEN HOME FOR .25 SECONDS I’M THE WORST UMMA EVER!!!! WAHHHH!

So, yeah, it’s not all sunshine, roses and unicorns flying out of our butts around here.  Come to think of it…Friday was just about as much fun as having a unicorn and roses…with thorns…flying out of my butt!

***THE PHOTO***

Just prior to the squeaky whale that sent us over the edge.

Don’t we look like we’re having *fun*? I’m holding his shoulder in a useless attempt to stop the impending limp noodle. Duhdee is already braced to hold him up. BIG SMILES EVERYONE!

Some of you will get this…

and some of you are going to think what is wrong with that girl?

My SIL makes the world’s best cookies. They have butterscotch chips and, I think, oatmeal? Regardless, I love them, love them, love them. I don’t know what’s in them because, if I knew, then I WOULD BAKE THEM. And eat them. And I am trying to fit back into my jeans so…it shall remain a mystery.

Monkey had one of these cookies and he decided he didn’t like it. He did what he always does which is to take it out of his mouth and throw it in the garbage. Good job, son!

The problem was…he threw it in the garbage can in the bathroom. SO, every time I opened up that garbage can my heart stopped because, well, do you know what mostly chewed oatmeal cookies look like when they’re placed just so on top of tissues in the garbage can directly next to the toilet???

Those of you who survived (or are currently smack in the middle of) that phase between the kid learning to take his/her diaper off and the kid learning to cwap on the pot and ONLY on the pot know how I felt those three days, repeatedly on the verge of screeching, “WHERE IS MONKEY?!?!?” and “DID HE WASH HIS FRIGGING HANDS?!?

The rest of you…just be happy, very, very happy you don’t get it 😉

Different But Not Less (blog hop)

First, I’d like to shout out to The Fragile X Files for making me aware of this! If you haven’t checked out Bonnie’s blog, you should! Really…right now. I’ll still be here. *twiddles thumbs ((in the most PATIENT way ever, of course.))*

OK, back? Aren’t her kids the cutest?? Love them.

Anyway, the subject of this blog hop, hosted by Adventures in Extreme Parenthood, is…

How does your family celebrate the holidays?
What changes have you had to make due to raising children with special needs?

I already posted, here, about the holidays and I was going to leave it at that. Christmas was great for us, but not for everyone and then I opened it up for a group vent ((A waffle iron??? Really??)) I’ve reconsidered because I realized that the reason we had a great Christmas was because we changed our expectations. That’s almost like…cheating…isn’t it?

Sorry.

I had amazing Christmases growing up and as long as I tried replicating those experiences for Monkey exactly, I was doomed to fail. Monkey simply could not handle a holiday like that. So what have we done that made this year such a success?

We knocked out the high stress activities.

  • We did not go to see Santa. The big man is barely tolerable to Monkey at 18″ in height standing motionless and silent in our living room…real live Santa? Massive meltdown land.
  • We did nothing that required waiting in line. Except that train ride at Edaville and Monkey waited in line only by choice. We had no intention of asking him to do it and had made alternate arrangements (Duhdee was going to wait in line and we’d join him at the end, just before getting on the train.)
  • We did not do a holiday photo/card. Monkey hates posing for the camera. I can sometimes get him to do it but there is a reason nearly all of my photos of him are candids. Introduce a stranger to the equation and we’re back in massive meltdown land.
  • We did not go to the annual Christmas Eve party that my parents now host (my Papa used to host when I was a child.) There are dozens of people that Monkey only sees a few times a year at best. It’s loud. There is drinking (so even louder than our normal loud.) Massive meltdown land. Also, Monkey sleeps in his bed when we are really, really lucky…hardly ever (bordering on never) in the car so he would have been up really late and thus exhausted Christmas morning/day. Massive meltdown land, again.

This might be the most shocking one…

  • We did not make Monkey open gifts. Really. He gets overstimulated with too much excitement, even good excitement and that leads to massive meltdown land.  We HATE massive meltdown land! So, Monkey is given his gifts and he opens what he wants, when he wants. If he decided to play with his trains (that he hasn’t touched in MONTHS) instead of unwrapping a new toy…fine. We simply told him, “When you are ready, you can open another gift.” and then we shut up. And when he was ready, he opened another gift. No tears, no fire engine red ear signaling our trip to massive meltdown land was on a fast track. And, we stuck with this even when we were visiting grandparents and knew they really wanted to see him open his presents. This was hard. We wanted him to perform for his grandparents. Who doesn’t want their child to make you proud by being the grandchild you know your parents dreamed of? But I’ve learned this, my parents and my in-laws, dreamed of a child that made their kids happy…and Monkey does that just by existing. They have seen what a huge difference it makes to let Monkey set the pace. He’s happier, he’s more social and he’s more verbal. He let’s his personality shine when we find ways to keep the anxiety at bay…and they love seeing it.
So, now that I’ve listed off all the things we didn’t do doesn’t it sound like a crappy Christmas? Honestly! So now let me tell you what we did do.
  • We watched Christmas specials. All of them. The Charlie Brown versions were the biggest hit this year and Monkey is still requesting “Char Brown?” Guess what? I watched all of these when I was little and loved them! Yay for traditions!
  • We went to Edaville instead of the Polar Express. Monkey loves trains. Monkey hates waiting. Monkey hates strangers talking to him. Monkey hates darkened, crowded, noisy theaters. We got to look at Christmas decorations and Monkey got to ride a train. Win ((I totally just typed Wine! There was some of that involved this Christmas too!))!
  • We went to a tree farm and cut our own tree. Monkey loves to be outdoors. Monkey loves to run around and yell, “Cut! Cut!” while brandishing his sawzall. Win ((OMG, WINE again! This might be a sign that I…nah!))!
  • We baked treats. Monkey loves to help in the kitchen, especially when the mixer and food processor are involved. We picked treats that would be low stress and fun for Monkey…this means NO cookies that require decorating, fine motor stuff annoys him. We made whoopie pies, chocolate with peppermint filling and OMG were they GOOD! Also, easy….mixing, scooping batter onto a cookie sheet, cooking, add filling. Easy.
  • We said “yes.” Right now, on the Fragile X listserve there is a discussion about our kids not handling being told “no” very well and the trips to massive meltdown land that can follow. One mom said this, “Anxiety= need for reassurance= need to hear yes.” That is brilliant and though we never put it in those terms, we’ve learned this for ourselves. We say “yes” as often as possible and our lives are better for it! If Monkey wanted to set up a complicated toy as soon as he opened it, instead of opening another. WE SET UP THE TOY. We didn’t care how long it took to get through the gifts. At my parent’s house we let him go watch a movie between opening gifts and he even brought a couple home with him unwrapped. Everyone was happier.
So that is it. That was our recipe for the best Christmas ever. It’s not what I thought Christmas would look like when I dreamed of Christmas with Monkey but it’s what I really wanted…joy-filled for Monkey…and that’s ultimately what matters to me. I’m glad I finally realized that 😉

This should be fun.

In anticipation of my trip to Calgary ((Only 12 more sleeps until I see Holly, Karen and Talitha!!! Yippee!)), I’m going shopping for a new winter coat. My current winter coat has a broken zipper so I’ve been using a paperclip to zip my coat for…a while…a long while. I hate to shop for clothes for myself so I’ve been putting it off for ages. I’ve convinced Monkey that he wants to go shopping with me but he has a preference for my next coat…he wants *PINK*. I have a coat in mind already but the pink-ish variation is sold out according to the website. Surely he’ll be fine with plum or blue, right? Right??

*fingers crossed*

Resolutions.

I’m not good at New Year’s resolutions, in fact, the only way I’m able to avoid total failure is to not make any! Two years ago, I broke that time honored tradition and made two resolutions: be more positive and to worry less. I think I’m a more positive person now (yay for pharmaceuticals!) but the worry. Oh, the worry. I just don’t know how to address that. I’m a worrier and always have been.

wor·ry·wart  n. One who worries excessively and needlessly.

See also: fussbudget, fusspot.

I was called all THREE of those as a child! So that was a failure. I honestly don’t KNOW what to do about it. It leads to so much stress and anxiety…and those lead to headaches. Is it possible to change something that seems hardwired into your brain? Maybe this is a conversation for my doctor. Noted.

This is why resolutions fail, I never set concrete goals. If I’ve learned anything from writing IEPs it’s that I need measurable annual goals!

I’ll give this one more shot. For 2011…

  1. Lose the 20 lbs I regained this year. (You know what the biggest issue was here? The battery on my scale died and I stopped my weekly check-ins! Damn that battery!)
  2. Do 11 things I’ve never done before. That’s less than once a month, totally doable. I have one planned for January already, I’m taking a “Mom’s weekend” and, if we stay sober long enough, I’ll get a 2nd one in as well while I’m there.

More fluff.

Mmmm…Fluff!

Anway. I am loving this song!

http://new.music.yahoo.com/hackensaw-boys/tracks/suns-work-undone–175347937

The Hackensaw Boys – Sun’s Work Undone lyrics

What I want you to know, is how much I love you.
I place no one above you
You’re always in my prayers

And on the day you were born
Something inside of me grew and,
Something inside of me knew that…
I had done the right thing.

And you did what you did,
You had your own reasons,
It was your season
I believe it was your spring

(Chorus)
And the rain said it’d come
Left the sun’s work undone
The flowers were happy for the waiting
And I knew in my heart
Baby someday we would part
For now, it’s worth all the changing.

Broom Straw fields
The mountain’s green and misty
It was our history
The songs that we were sung

And it did not go
The way that I prayed for
The way that I stayed for
‘cause said I would

And the rain said it’d come
Left the sun’s work undone
The flowers were happy for the changing
And I knew in my heart
Baby someday we would start
For now, it’s worth all the waiting

And the rain said it’d come
Left the sun’s work undone
The flowers are happy for the changing
And I knew in my heart
Baby someday we would part
For now, it’s worth all the waiting

For now, it’s worth all the waiting
For now, it’s worth all the waiting 

How about some fluff to counter the deep shiznit?

I think I’m actually going to do New Year’s resolutions this year but I need to scrape up all the wispy thoughtlets floating around in my head and make at least one cohesive thought. So…stay tuned for that bit of fun.

In the meantime, Monkey is at home this week for winter break. I am not. I am working. I’d like to whine about that but I’ve got a damn good job, THE job I wanted so badly, therefore, I will not.

As I was getting ready, Monkey was directing the morning activities. Duhdee was instructed to take the dogs out, the dogs were instructed (from the upstairs window so they may have missed it) to “poot,” Money was instructed to put on “boots,” “scart” and “make tea!” He’s v. bossy!

By the time Duhdee returned with the dogs, Monkey and I were “ready.” He was trying to convince me to carry him down the stairs but Money was wearing black pants and those boots he was wearing had already left one boot print on me so he was not having much luck, the poor little dumpling. He turned to look at Duhdee critically, “Honey, hat!” Honey put on his hat. Monkey still wasn’t satisfied. He looked at Duhdee a moment longer before announcing, “Glubs.”

Who knew he even knew the word? Certainly not his parents. Every time he does this I wonder what else is stored in that not-so-lttle noggin that we haven’t gotten out yet because, apparently, the subject just hasn’t come up yet?

Well, hi, there!

So that whole Christmas thing that we hyped up and had such high hopes for? I told Duhdee on Sunday night it was the best Christmas ever and I meant it. That is high praise given how many amazing memories I have of Christmas growing up.

So, why haven’t I blogged? It’s not for lack of time or lack of material. I am conflicted. While we had an amazing time with thoughtful and understanding friends and family, I know that isn’t…by far…a universal experience. I know that there are a lot of you out there who love Christmas just as much as I do and who had high hopes and dreams for a lovely holiday that didn’t work out. This thing that we live with, Fragile X, is a beast. It doesn’t just reach out and break your heart once. No, it grabs on tight and squeezes the joy and happiness out of you at some of the most unexpected moments…and certainly at some of the least convenient moments.

At Christmas, when we surround ourselves with extended family, we’re confronted with all sorts of nasty surprises ranging from well-meaning family members (who should know better and shame on them if they’ve never taken the time to learn) to less-than-well-meaning family members (and shame on them for making a hard situation harder) to “typical” families who are neither ignorant nor malignant but their very existence in that nice, neat little world we dreamed of for ourselves (which we find ourselves locked out of) pains us. This time of year seems custom-built just to hurt and anger those of us with kids with special needs. I don’t want to add on to that.

For any of you who think you’re alone in having had a crappy holiday, you’re not. I’ve heard stories that make my blood boil.  Stories that were not at all evident in the happy photos you may have seen. It’s human nature to want to edit our lives and put our shiniest, happiest face forward…we all do it at some time for whatever reason…but let me tell you you aren’t alone. There are some real assholes in our families that we can’t call out publicly without repurcussions. I’ve adjusted the comments setting, feel free to leave a comment and get it off your chest, you don’t have to give a name or an e-mail address 😉

Fair warning, this one is dripping in sap.

I am not supposed to be blogging! I am supposed to be wrapping Christmas gifts, making treats, walking the dogs, cleaning the fish tank, cleaning the house, sleeping…something…pretty much anything except blogging but here I am.

I was clearing off the dining room table so I could wrap yet more presents and, buried under Monkey’s latest gold star work, were two Christmas cards I had missed. I hung them on the ribbons with the rest and I got that feeling again, you know, that warm fuzzy, all-is-right-with-the-world feeling? The one we parents, and especially we parents with kids facing extra challenges, so rarely get. There is always so much to do, so much to worry about, so much to fear.

When I get that feeling, I always try to fix it in my memory. Last year it was my Extra Special Santa and this year…it’s you…my friends…my family. I have been so amazingly fortunate this year and it first started to sink in when I realized I’d added 40 new people to my Christmas card list this year. I recognize that I don’t deserve half of it but I am grateful beyond words for it anyway. I am grateful beyond words for the support, the love, the laughs, the tears, the understanding. Whether it’s been a comment here, a “like” on facebook or a hug in real life I have absorbed every bit of it…every last positive thought and kind word. I’ve been changed by it.

I’m not going to make any grand proclamations because, when 2011 rolls around, you’ll still find me here with my eyes rolling wildly and gnashing my teeth but know this, under all that, I’m so much closer to the person I want to be now than I was last year…because of you.

♥Merry Christmas♥