Month: January 2011

I’m going to Canada!

Melissa

I’m leaving bright and shiny early tomorrow. I’ll be up before the sun, heck, I’ll be in the air before the sun rises. I shall wing my way across the country and meet up with the incomparable Holly Roos. Then we shall fling ourselves northward to the open arms of Karen Helm ((Hahaha, totally kidding, I know how to spell your name Karen Kelm, I promise!)) and Talitha Humphrey. If you aren’t friends with those three ladies, you really should be. They’re amazing and I am so thrilled to be going away for my first ever Mommy’s weekend with them.

Between the four of us we will be representing 3 Fragile X groups, how cool is that? Being four moms who are all active or becoming active in the Fragile X world we could not possibly do a weekend away without a logo.

If I do, in fact, survive. I shall have tales to tell. Of course, I will have to leave out the drunken bits. Hopefully there will be something left to tell!

Another thing that sucks…

Melissa

migraines…they really suck.

I am a headache kinda girl. I get headaches when I’m too hot, too cold, too hungry, too tense, too hormonal (sorry, was that an overshare?). I also get headaches when strong weather fronts pass through (mostly starting from sinus pressure) and sometimes I get headaches for no particular reason. Go me.

I’ve seen quite a few other fragile x mom’s comment about migraines and headaches too. Is this a carrier thing because I’m still waiting to “grow out of it” as my doctor once told me I would. Yeah, I do find some truly awesome doctors…

And, of course, he was fine.

Melissa

I totally knew he would be. What?

Once he got through the transition, he settled down and had a good day at school. Sometimes I really can’t listen to my heart because my heart is not very smart. My heart wants to keep him happy and laughing even if that means we stay in our pajamas and never leave the house. It’s a good thing my head gets a word in once in a while and keeps us on the path to building a GOOD life for this little Monkey…one that does not revolve around pajamas and never going out or doing anything.

Well, that sucked.

Melissa

We just dropped Monkey off for school. I commented last week that Mondays are generally a little tough because he, quite frankly, doesn’t want to go back to school. He would much prefer to stay home in his PJs with his dogs and…I can’t argue with him. I’d rather do the same. BUT, we joyfully head off to school each Monday with a grumbling, unconvinced Monkey in tow.

This morning we had the added fun of a nasty winter cold. He has a cough and a runny nose but no fever. He doesn’t feel great but he doesn’t meet the school’s guidelines for staying home either which are fever, vomiting or diarrhea…so. Off to school he went. I did mention to the teacher that conjunctivitis is apparently making the rounds since Monkey is prone to it and to please watch him for any symptoms but I don’t think that’s an issue…and trust me when I say that he was so upset about going to school I would have jumped at a chance to take him straight home.

We eventually left him and I made Duhdee sit in the car out in front of the school for 15 minutes. Another mom who had been in the room when we left came out and reported that Monkey was fine, he’d gone to sit on the couch with a blanket. Uh, have you met our hyperactive Monkey? That is not a good sign! After she left I ran in to the school office and asked them to call the classroom to check on him. The assistant who answered said he was fine and was playing in the sand table ((Oh, that’s going to go well with a runny nose!!!)) so I could do nothing more but leave.

Now, I’m at work and still worrying about my guy. He’s fine. I know they wouldn’t have kept him if they thought he wasn’t but…my Mommy guilt doesn’t seem to be accepting this today. *Sigh*

A delicate balance.

Melissa

We’ve been walking a really fine line here at Chez Monkey for a while now. Since Monkey’s AT specialist passed away, actually. We’ve been trying to deal with the sadness we feel at having lost someone we really liked. Someone who was always such a huge advocate for Monkey within the IEP meetings and, also, with our insurance company. She managed to get my insurance company to pay for a $7,000 device for Monkey when the policy stated they’d cover $750. After our deductible. So…she was pretty much a miracle worker. AND she was nice and funny and so completely dedicated to her students. She would e-mail us at all hours of the day though we tried very, very hard to respect her “non-school” hours.

On the other side is this, Monkey has a $7,000 voice output device that is nothing more than a weight in his backpack. The AT specialist passed away just a week after she locked down the device so thoroughly that we could not even turn it off. We had not received any training on the device at all. The teacher and classroom assistants had not received any training on the device at all. There is no plan to integrate it into his day. The district had two AT specialists but we found out after E’s passing that the other, had quit, possibly weeks before. No one will say.

So.

Monkey has AT services written into his IEP. The district has no one trained to provide this service due to this terrible loss we’ve all suffered. Currently, the inclusion specialist is taking the 30 minutes a week that belonged to the AT but she has no idea what she’s doing. The device maker did set up training for yesterday (which I couldn’t make) so that is a step in the right direction but that is the result of Duhdee taking the lead, not the school.

I’ve been waiting for the district to come up with a plan but so far nothing has been put forth. I don’t want to make this into a “thing” but it’s quickly headed in that direction and it makes me sick to my stomach. I don’t want to have to call my advocate and call an IEP meeting to work out compensatory services. I don’t want to have this fight when there is a much bigger fight looming this spring over placement…there is no inclusion classroom in the district for 1st or 2nd grades and that is where Monkey belongs.

I guess this isn’t really about what I want though, is it? This parenting gig never is. It’s about what Monkey needs. I’ll be making that call to the advocate now :-\

He’s ahead of schedule.

Melissa

Monkey is ahead of the game this week at least in regards to his weekly fade. He typically starts the week a little rough, it is hard to go back to school after a weekend, right? But he’ll rebound and have a good Monday (minus the AM transition), Tuesday, Wednesday and Thursday. By Friday, he’s tired and it shows. 

It’s well documented that he doesn’t get as much sleep on school nights as he does on vacations despite the fact that we keep the same sleep schedule and routines day after day after day. He just DOESN’T sleep as well. He has trouble falling asleep despite the medications and he has trouble staying asleep. So. Friday mornings are a whiny mess but he makes it through and generally does OK…maybe resting a little longer at story time than normal but nothing outrageous.

Today, you may have noticed, is only Thursday.

Today should have been an easy, peasy drop you off and “see you later” kind of morning. Unfortunately, Monkey was whiny and dragging asp. He wanted me to carry him to the car. “Not today, we’re going to ….?” “School.” He wanted to ride the train, pweeease?? “Where are we going?” “School.” He wanted me to carry him to class. “Monkey, you’re too …?” “Heavy.” (Not really but I only carry him as a very special treat when he’s being very good.)

Once we got to class he was tearful, wanting lots of hugs, wanting us to stay. He’s exhausted. I really just don’t know what to do. He’s on meds for his ADHD that typically results in drowsiness but it doesn’t seem to help him fall asleep. We use melatonin sometimes but he gets used to it after a while and we have to take a “drug holiday” because it no longer works. The Dr. we see will just have us chart again and the numbers aren’t awful. He loses 30 minutes or so of sleep but that ADDS UP and by the end of the week he’s wasted again.

This week is probably worse because he did have last week off. It’s just so sad to make this little guy chug through a day when I know exactly how miserable he is. No one ever promised it would be easy though.

Where’s Karen? I need a “suck it up, buttercup.”

We’re going back to Madison!

Melissa

Wayyy back in 2008 ((Really?! Dayum! I’m glad I blog or I’d never remember anything!)) we were accepted into our first research study at the Waisman Center. We traveled in August 2009 for our first visit and we absolutely loved Madison! It is a great city and I would love to be going back in the summer. Alas, the 2nd visit is done as an 18 month follow-up visit so we’re going back to Madison in…February.

Yes, Madison, WI in February. Have I ever mentioned that I hate the cold and that I classify anything under 70 as cold?? Yeah. So…that’s less than ideal but…but…I don’t know. That rather sucks. Oh, I know! But Monkey will get to fly on a plane again and Monkey looooooved the plane trip. So, that will be cool. Yay! Found my silver lining, the world may resume spinning.

Cheeses priced. I am so distractible. I blame the caffeine. I also ♥ caffeine! Such a disfunctional relationship! Wee!

Anyway. I have forgotten my point. Oh, that’s right. I didn’t have one beyond what’s in the title. Sorry.

I feel bad. I’ve just wasted your time! Hmmm, I know! Check out the pictures from our last visit! I envision iceskating on the pool and, well…the bear will probably be hibernating but maybe the penguins will be out!? Sliding down the snow covered streets on their cute little bellies! I’m going to freeze. UGH!

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

Melissa

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.

****

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!