More fluff.


Anway. I am loving this song!–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

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♥


On Monday Duhdee reported at dinner that Monkey’s teacher had needed to use a “very firm voice” with Monkey that day. Uh oh.

The “firm voice” is a big deal. It, the promise of a time out and, on very rare occasions, an actual time out are the only disciplinary measures we’ve ever needed with Monkey. They’ve only ever used the “firm voice” at school. Each time we get a report, it’s that rare.

Duhdee told me that Monkey had gotten a mouthful of water from the water fountain and then SPIT IT on the floor! Fortunately, Monkey was staring at his plate and didn’t catch my struggle not to laugh. WHY would I be tempted to laugh?

We watched this on Sunday…this scene in particular…twice.

All I wanted to know was, did he say “Tada!” too?1

  1. Of course we did NOT laugh and we did talk very seriously about the fact that we do not spit water at school. []

Have you heard of the Logo Reading System?

We’ve had the pleasure of attending several Fragile X related conferences over the years and the Logo Reading System developed by Marcia Braden has been mentioned more than once. I’ve looked at it but we’ve never gone any further than that, Monkey was still pretty young. Now, however, I’m thinking we should ask the school to consider it. Why the change of heart?

Monkey has demonstrated before he recognizes logos. Dunkin Donuts for instance, but really, that’s not a shocker…we are frequent fliers at Dunkins! But over the last two weeks we’ve been hearing more and more from him. He’s “reading” logos. Yesterday alone we heard Geico, Bank of America, Fox, CBS and Sprint…also a bunch of numbers. Seven! One! Nine!

Anyone want to guess where we saw all these? Hmmm, this last one will tip you off. NFL.

LMAO, who said football wasn’t educational?

If only T K was this easy.

We are not fans of Mondays here at Chez Monkey. I was in super-duper, extra slow-motion because I was up until 2 AMchatting with some WICKED awesome friends, two of whom seem to live in this place called C-A-N-A-D-A. Neat, eh?1 And, yes, even the morning after I can say it was sooooo worth it! I highly encourage other moms raising kids with FX to set up Skype dates with other moms. It is a great, FREE way to connect with other parents when you might be isolated either by distance or some other circumstance. You can even set up group chats.  It’s tons of fun. Do it!

Monkey was in super-duper, extra slow-motion because…that’s what he does when he doesn’t want to go to school. Which is daily so not really that big of a deal because we build time into our morning to accomdate that2 but on days when I’m running slow too, suddenly all that built in time disappears…and then some. I wish I knew how that happens because it sucks!

Anywho, we were both moving slower than molassess3 which ratchets up the stress in the household. Perfect for a Monday, eh4?

When it came time for putting on shoes and jackets he was starting to get worked up. The faster we move the more upset he gets, sound familiar? I finally have everything ready. His hat and gloves packed because it’s 51 degrees here this morning but it will cool off later, his Vantage Lite, his BEE folder, his jackets…let’s go, let’s go, let’s go.

Then he stopped moving. “Money, skart?”

“What? We have to get going bud, let’s go.”

“Monneeyyyy, SKART?”

“Uh?” (thinking WTF is a damn skart??)

“Money, skart? Wrap up?”

Ohhhhhhhhhhhh! “OK, Monkey, I’ll put your scarFFF on. Ready?”

And, he was. So, fine, it is 51 degrees out but check out them mad vocab skillz!

  1. Don’t be jealous, they’re teaching me to speak Canadian. []
  2. Please don’t tell him that or he’ll find some new way to derail the school plans!!! []
  3. Much, much slower than molassess in January for sure. []
  4. SEE, I’m practically Canadian already! []

Not a single guess?

No one wants to translate “T K” for me, eh? Dang it.

We took Monkey to Edaville yesterday. He was really excited about the trip, there was a TRAIN involved, after all, but we nearly had a massive failure. The problem started when Umma was in the truck, playing with her phone and got a notice about a yard sale at Fenway Park. Yard Sale. Fenway Park.

So, we took a quick turn off Storrow and made an unscheduled stop. We know better but did you catch that bit about a yard sale at FENWAY PARK?? Sometimes you just have to go with the flow…that is an important life lesson to practice, right? Plus FENWAY FREAKING PARK, people! Totally justified. Monkey, though, completely unimpressed. In fact, if he knew the word he would have said he was p*ssed. Totally and utterly, even.

After that fun little stop1, we drove over an hour to get to Edaville. Monkey was able to pull it together during that time and I think it would have gone pretty smoothly if not for the 30 minutes it took us to drive the last 1/2 mile. Unreal.

We sat quietly in the car enjoying a view of the lights while Duhdee bought the tickets and I really thought the worst of it was over. Haha! Silly, silly me. When I tried to get him out of the truck he crawled to the far side of the truck and yelled “No, stay here!” I don’t think so, little man! I managed to drag him out of the car and get him heading towards Duhdee. Then the train went by and blew it’s horn. ZOMG! After peeling him out of my butt we joined Duhdee at the park entrance. I literally had to carry him into the park. Once inside I had to physically keep him there.

Monkey and I stepped off away from everyone else and had a heart to heart talk during which I used the words “You listen to me” and “You had better.” Totally stellar parenting. Then I STFU and walked away. I was done reasoning with him, I knew he’d follow and I knew he’d calm down once I stopped talking to him. I have learned a thing or two about hyperarousal, it’s remembering it in the heat of the moment I suck at.

So, I walked around in a quiet area and studied the lights with Monkey hot on my heels. By the time we had made it to the bench where Duhdee was sitting Monkey was calm and ready to go on the train. We were going to let Duhdee wait in line and then join him at the end but Monkey wanted to stick together so…we stood in line…for over 20 minutes. *Twitch* We just missed the cut off for the 2nd train but it turned out to be a good thing because Monkey started shuffling his feet and grabbing his pants. When asked if he had to pee he kept saying “No! On train?”

Umma drew the short straw and took him to the bathroom. This was just plain stupid because everyone knows the line for the Ladies’ room is always 10 times the line for the Mens’! When we got to the end of the very, very long line Monkey started telling me “Pee? Money, pee!” Cwap. Several people looked at us apologetically but no one was going to let us cut. Then a man came out of the men’s room and cracked wise about there being no line for that bathroom, heh, heh, heh. 2 minutes later we exited the men’s room, done with our business, just as he finished scraping his jaw off the floor. There were 4 other women in there when we left.

After we got back in line for the train we had just a short wait left. Monkey was totally relaxed at this point and excited about having a turn on the train. The trains get quite packed and Monkey tried to cadge a little extra space by putting his feet on the bench, lol. We got him turned around and he didn’t much move for the entire trip. He was transfixed by the lights and the train ride. The only complaint we heard was that there was no tunnel but it is a cranberry bog so I think that’s to be expected, lol.

After the ride, Monkey announced he was ready for some pizza so we headed home. About 10 minutes from the house, he fell asleep. It’s a good thing he was so tired or I would have woken him up when I turned around and saw this…

Don’t judge, you would have laughed too.

  1. And I, at least, DID have fun. I have a very slight obsession with Fenway. []

What is he saying?

This has been a consistent game in our lives for the last two or three years. Even as his speech gets clearer and clearer there are still times when we just have NO idea what he is trying to say. It seems like every time I ask you to play along something clicks and we figure it out. I am counting on you to work your magic once again because this one has been going on for weeks now and it’s driving me bat-shiznit crazy and I’m really trying to cut back on my crazy these days. So.

Every weekday morning, on our drive to school, we drive through Inman Square1. As we approach the intersection Monkey calls out “T K!”

What. The. Fudge?

He has, lately, begun to use it at a few other intersections now too but it clearly has something to do with the traffic lights. We’re stumped so let’s see you work your magic my peeps.

  1. Go ahead and Google Map that because it’s one nutty intersection. []