I must apologize…

I feel as though I’ve given you all the blog equivalent of “Someone I love went to Detroit and all I got was this lousy t-shirt.”  I can do better than that.  I did actually learn stuff.  I did not spend the entire conference at the bar, I swear!

One of the sessions I attended was called “Maximizing the Educational Experience for Children with Fragile X Syndrome by Developing an Appropriate Individualized Education Plan.”  It was presented by Vicki Sudhalter, Ph.D.  She is with the NYS Institute for Basic Research in Developmental Disabilities.

First of all, she is hilarious.  If you ever get a chance to hear one of her presentations, go!  She would be at the top of my list of FX experts to bring into the school should we ever run into a wall that our advocate couldn’t bring down.

Her 3 main topics for discussion were:

  1. Accommodations for Hyperarousal;
  2. Appropriate Assessment Methods; and
  3. Appropriate Goal Creation.

I was mainly focused on part 1, we’ve had very good luck so far with our school district on parts 2 and 3.

Often schools will target behaviors such as hyperactivity, impulsiveness, distractibility, anxiety (covering eyes/ears), aggression, self-injury (hand biting), “autistic” behaviors (flapping, rocking, etc.) to name a few.  Her point was that, for our kids, all of these behaviors stem from hyperarousal.  The school should not be targeting these behaviors and the IEP should not have goals targeted to these behaviors.  The school should be dealing with the underlying issue of hyperarousal through accommodations.

What types of accommodations?  Classroom design and management are both prime areas to target to help deal with a child’s hyperarousal.  The following are some of her suggestions:

Classroom Design:

  1. Lighting –
    • Natural lighting is best unless it is too direct or too bright.  You should pay attention to the lighting throughout the day to be sure the child isn’t being blinded by afternoon sun. 
    • Incandescent lighting is the next best alternative.
    • If neither is possible there are covers that can be put over fluorescent lights to diffuse it. (Sample here.)
    • Minimize or eliminate shiny surfaces that reflect light.
  2. Acoustics –
    • Sound dampening to reduce echos.
    • Dampening of fire alarms and/or loudspeakers
    • Avoid classrooms near the gym, cafeteria or playground.
  3. Decorations –
    • Avoid busy, colorful or complex wall decorations.
    • Use muted colors.
  4. Workstation Layout –
    • Provide visual and acoustical barriers to increase focus.
    • Allow for side by side seating during direct instruction.
  5. Provide a cozy corner/safe place.

Classroom Management:

  1. Follow a routine, provide visuals.
  2. Don’t force/train eye contact.  Don’t mistake looking away with not  paying attention.  Consider sunglasses as an option for the child to allow them to have the correct orientation (face on) but still not force eye contact.
  3. Have a sensory diet.  The sensory activities need to be accessible to the child throughout the day. 
  4. Consider a sensory choice board. 
  5. Don’t use food as oral stimulation.

Then, very quickly, a couple notes on assessing a child with FX.  Rather than standardized tests try for teacher observations.  If your child is doing or saying things at home that he/she won’t do at school or won’t do well at school and you can’t convince the school of that…videotape it.  Give the team a copy of the videotape(s) prior to the meeting.

SEE?  I really did more than relieve the hotel of their riesling!

Apparently this isn’t going to just write itself.

A few of you may have heard that there was this thing in Detroit last week.  It was a chance to learn a lot, drink a lot and laugh even more.  I’m not sure how long it’s going to take for me to process all the information that I tried stuffing into my little pea brain between trips to the bar.  I have notes and a list.  Having done a few of these conferences, Tracy (the Tracy of Tracy and Mouse) told us not to run home and change everything which is almost the only thing holding me back.  The other thing holding me back is that I barely have the energy to breath.  One of the most awful things I learned at the conference is that I’m not 21 anymore.  I still don’t get hungover if I drink all night (haha!  take that reisling, I win!) but I do get very, very tired…and it takes a loooong time to bounce back.  How long?  I’ll let you know as soon as I bounce back.

There was another awful thing I learned at the conference.  I’m an idiot.  OK, no, I didn’t really learn that at the conference I’ve known that for a while but I’m an even bigger idiot than I thought.  You see, before I came to the conference I printed off a conference agenda and marked off all the sessions I wanted to attend.  The last session was the Sunday morning Q&A session with the behavior experts and I knew I had to go because Monkey has this behavior that has been driving me out of my gourd for the last few months.  I totally needed expert help to figure this out.

Initially the trouble was that, every night when I got home, Monkey would whine and tell me to change into my pajamas.  The way he said pajamas was cute and I like wearing my pajamas.  A lot.  So, I changed into my pajamas and the whining stopped.  Win all around!  I’m so talented, I trained my child to whine.  Once the whining got annoying I decided it was time to nip this right in the bud, thank you very much!  So, I would tell him very firmly that I was not going to change and I didn’t.  Until he started crying.  Then I did.  AWESOME, now I’ve taught him to cry!  Where is my mother of the year award??  In the mail, I’m sure…just wait until you hear what I did next!  I became very concerned because clearly I could not have him crying every night I came home!  So, I told him that I would not change!  No, no, no, no…awwww, sheet…he puked.  I taught him to cry until he PUKES.

So, blah, blah…operant learning…blah blah…negative reinforcement…blah blah…vicious cycle.  I’m working under the assumption right now that the antecedent is my arrival home and the stress/anxiety I’ve built up through the day.  I relax when I finally put my pajamas on and then Monkey also relaxes.  It all seems so reasonable, doesn’t it?  Now I just need to figure out how to drop the stress and anxiety somewhere between my desk and my doorstep, oh, and simultaneously untrain my amazing puking Monkey…who’s now daily greeting just might be ratcheting up my anxiety a notch or two.

It’s feeling a bit like a Catch-22 at the moment so tonight I did what any sane, rational parent would do in this situation.  I snuck in the back door, ran to my room and changed before he even realized I was home.  How about them parenting skillz!

I had no clue!

Before we left home Duhdee asked me if I was going to do a “Rock City Edition” and I said, “Yeah, of course!” I thought I could blog every night!

Clearly I was delusional.  Every morning we get up at 7, we go downstairs to grab coffee/tea/pastries and wander around the various booths from 8 until the plenary session starts.  After the plenary session we move straight into our break out sessions.  There are always multiple sessions we want to attend in each time frame and we just move from one right to another.  Then lunch.  The past 3 days there was something planned for lunch, even.  After lunch, we’re straight back into the breakout sessions until dinner.  We’ve had dinner events since the conference started too!  So, we’re finally to the later evening and then the REAL fun starts!  This is when the parents start gathering in the bar or the other common areas to talk.  And talk.  And talk.  And, possibly, have a drink or two or more.

It is an amazing, amazing experience.  This is the first time I’ve had a chance to sit down to even attempt a blog and I find that I can’t do this conference justice.  We’ve gotten tons of information from the presenters.  It seems impossible to do anything but say, again, it’s amazing.  I know this is not helpful at all for those of you who couldn’t be here.  I wish there was a way to dump all of our experiences out here in a coherent, helpful way.

A lot of the presenters have posted handouts and even their slides online but so much was conveyed…you’d really need to see videotapes to get the full effect of these funny, smart people who’ve put so much effort into making our lives and our experience here better.  The next conference location will be announced tomorrow night.  I hope it will be in a location where those of you who couldn’t make it this time will be able to get to because it’s not just the sessions and the handouts…it’s the energy, the excitement, the hopefulness that everyone here just exudes.  There were a couple sessions today that I will talk about in more detail when I can because they got straight to the heart of my deepest fears I have for my son.

One last thing…I’ve met a lot of people that know me through Facebook or who read here…but not everyone.  I’m nearsighted, I can’t read all the name tags in the halls (you’d think I’d get glasses, no?) and I sure as heck can’t make out faces from across a room…yell at me (assuming you want to meet, lol), point and laugh at me, throw something at me, whatever.  I really, really, really want to meet you.  EVERY ONE OF YOU.

OK, dinner…see, never enough time!!!  I don’t even have time to proof this. Hopefully something makes sense.

Stuck in the middle.

I’ve such a hard life.  This week has been quite busy and a little stressful because we are currently stuck in the middle of two vacations.  I know, poor, pitiful me.

We had such a nice time while on vacation in the mountains.  None of us really wanted to leave.  The last morning my dad even said, “Oh, let me check my Powerball ticket to see if you have to go!”  Unfortunately, we did.  This week has been a lot of running around, mostly by Duhdee.  We needed groceries, but not too many.  Grampy had a doctor’s appointment.  The truck had a doctor’s appointment.  We needed to hire a pet sitter1.  Then, at work, we’re in the middle of a bunch of big projects and they’re moving my office from my temporary location to my new permanent one which meant lots of work and packing in the “spare” moments.  Ugh.  I was so glad to get home yesterday for cocktails!

Now our focus has shifted to preparing for vacation number TWO in lovely Dearborn/Detroit, Michigan!  I’m super excited and, also, ready to throw up.  I can’t wait to meet all of the other parents at the conference and I’ve been through the agenda several times highlighting the sessions I must attend.  Now I just need to figure out how to be at 4 places all at the same time2.

So, why do I want to throw up?  I’ve never left my son for a week…I’m terrified.  He’s going to have a GREAT time with Grammy, Grampa, Auntie and their dogs but OMG.  We’re going to install Skype for my parents, it’s the only thing that’s kept me from hiding under the bed with the dog.  *Sigh*

It will be fine.  No, it will be great.  I will learn a lot and have so much fun connecting with other people who walk the walk too. But if you see someone in the hotel on Tuesday looking a little wild-eyed and snapping at her long suffering husband, well, hey, you’ll know it’s ME at least :-) I’m sure I’ll be fine after a visit to Archimedes.  I’ve already scoped out a table…

If you’re coming, see you there3!!!!  And if you’re not…bugger :-(.  Next time?

  1. I know but I have reasons beyond procrastination for putting this off!  1.  The eldest was sick prior to vacation and we didn’t know if he had a UTI that didn’t show on vet tests or if he was experiencing kidney failure (he’s early stage) and so we didn’t know WHAT type of care he’d need.  And  2.  OK, I just had the one but it was a good one! []
  2. Any physicists in the house?  I could use a little help on this one. []
  3. And by “there” I don’t just mean that table at the bar.  I’m sure I’ll spend some time at the pool and oh, hey, maybe in one or two of those amazing sessions they have planned!  But you’re more than welcomed to join us at the table too! []

Wilderness Edition: The last day.

They say all good things must come to an end and this is precisely why I hate “them.” 

Our last evening in the wilderness was a lot of fun.  The neighbors, I shall call them the TMI’s (and they know why, no one makes me blush…ever!!), came over for dinner, drinks and fun.  We had all 3 in abundance but, then, we always do at camp which is why we’re all always so sad to have to go home.  I know I probably make us all sound like total drunks but really that’s such a harsh word.  I would say the worst we get to is, perhaps, “tipsy1.”

I had been planning to pack up before bed so that Duhdee and Grampa could go fishing guilt-free the next morning but that didn’t work out exactly as planned.  You see, instead, I went to sleep.  I gave melatonin to Monkey (as usual), BOTH of the dogs and myself and then we all slept straight through the night, yay!  Of course, that meant we had to pack up in the morning which killed any chance of fishing.  It all worked out though.  We needed the sleep and it ended up pouring just as we finished packing the car.  If we’d started any later would would have gotten totally soaked rather than just uhhh…soaked…  My shirt was still damp 4 hours later when we got home.

Normally, the ride takes about 5 hours, we did it in less than 4!  We weren’t speeding2…we just didn’t hit any traffic and we didn’t have to stop.  Both the kid and the dogs made it the whole way without needing a bathroom break!  Woah, baby.  Of course, we also had an incentive to keep moving.  Something is wrong with the blower motor in the truck so although the A/C was running fine the cooled air wasn’t being blown into the truck.  We had the windows down as much as possible but it was still sunny and in the upper 80’s so that was not very effective.  Not effective enough to keep Duhdee comfortable, at least, and an uncomfortable Duhdee is a crabby Duhdee.  Fun.

We had been telling Monkey as we were packing that we were going home and expected some anxiety.  We thought he’d be eager to leave, he’d been mentioning “home” for a day and a half by this point, but that was not the case.  He kept telling us “No, campt3!”  He did finally come around once the truck was packed but then he switched from protesting our imminent departure to “OMG WHY HAVEN”T WE LEFT YET!!”  Which is always nice.

Our arrival home was predictibly cwappy.  Monkey’s transitions are often stressful and this one was no different.  He was a crying, snotty mess while we unpacked.  He didn’t settle down until I was in my pajamas and we spent some quality cuddle time in the big bed.

Now who wants to go break it to him that he has to go to school tomorrow?  Anyone??  Please???

  1. Which can also be translated to “steps into dog bowls full of water creating small ponds on the kitchen floor.”  And that would be me, of course. []
  2. any more than usual []
  3. not a misspelling, it’s how he pronounces it and it’s so frickin’ cute! []

Wilderness Edition, Day 10, Wahhhh!

Today is our last full day of vacation.  It goes wayyyy to fast.  Last night was a rough sleeping night for our crack-head Aussie mix which means it was a rough sleeping night for me too.  He’s generally a freak but last night was beyond even him.  He managed to get himself stuck under our bed TWICE.  After having been rescued once you think it might have deterred him from repeating the move and you would be wrong.

At first I thought maybe it was his thunder-phobia but I took him outside and there was nothing but millions of stars for miles and miles.  There wasn’t even a single cloud in sight.  Just after I reassured him that there was nothing out there to be scared of something stepped on a dried branch in the woods and sent us both scurrying for the door.  Ultimately we gave him a sedative that we normally reserve for thunderstorms but I still lost a good 3 hours of sleep trying to get him to settle down and stop trying to squish himself into spaces that were much too small for him.

This morning, for something new, Duhdee and Grampa went fishing!  They got up early, as usual, but the oppressively hot weather here finally broke overnight and then this morning it poured.  They eventually left around 8:30 and Monkey and I got up at 10:30! Yes, TEN THIRTY!!!  Of course, that threw off the meals and meds schedule but whatever.  I needed that sleep!

We took a quick turn through town in Grammy’s van to see if there were any yard sales but I guess the morning rain caused some cancellations.  We did manage to find 3 deer and a moose in our travels so we didn’t get skunked.  Oh, wait, we kind of did.  Someone had hit one in town recently and the smell was noteworthy. Yuck.

The neighbors are coming over for dinner again tonight.  We’ll be having the 3 brook trout that Grampa and Duhdee have caught over the last couple of days, teriyaki steak, garden salad, pasta salad with shrimp and banana cake for dessert.  And, of course, Maine Blueberry Lemonade *grin.* I’m going to try to avoid another whipped cream incident.  I don’t need to remind Grammy that she hasn’t yet exacted revenge with only one day left!

It happens everytime.

We go to camp and Monkey has a language explosion, it’s amazing.  This year was very exciting because we were hearing new words but we were also hearing sentences!  And!  He was having conversations, answering questions, telling us about things he’d seen or done.  It was very cool and we kept a list.  So, this is a sampling of what we were hearing last week…

Conversations:

Monkey:  “Close it.”
Mommy:  “Close what?”
Monkey:  “Close the door!”

“Monkey, where’s Grammy?”
“In the store.”

“See the ladybug?”  (a magnet on the fridge, also one day on the boat he had one land on his hand.)
“In hand.” (follow up when I decline to hand it to him, complete with pointing to his hand in case I misunderstood.

Phrases:

“Ivan, catch!”  (Also, Grammy, Grampa, William, Duhdee, Auntie, etc.)
“Are you kidding me?”
“Go this (or that) way.”  (He’d point, he’s got a great sense of direction and knows how to get everywhere it seems.)
“See you later!”
“What are you doing here?” (Sometimes, “Lissa1, what are you doing up there?”)
“Tea’s ready!”
“Grammy’s Campt.” (Also, Grammy’s van, Grammy’s boat and Grammy’s hairdryer)
“Hi, monkey!” (Talking to a monkey in a cartoon)

New words (they are crystal clear):

Frog
Froggy
Four wheeler
Hamburger
Comfy (Speaking of Grammy & Grampa’s lounge chairs, they are indeed.)
hummingbird (Also, Grammy’s bird…it is her favorite…and butterfly bird)
deck
stream
silly bug!
moose
tired

In addition he was using lots of words and phrases we’ve been hearing for a while but his pronunciation was much clearer, everyone was understanding him probably 90% of the time. Very exciting!

  1. what my family calls me []

Wilderness Edition, Day 9, Ducks and Deer and Moose! Oh, my!

You’ll be shocked to hear that Duhdee and Grampa went fishing again, I’m sure.  They leave each morning at 5:30 or 6.  Do you think it’s possible to get Duhdee out of bed that early for anything else?  Here’s another question, do you think it’s possible to get me out of bed that early for…uh…anything?  I might, might, consider getting up that early to get on a plane to some exotic location where I’d be pampered and have every whim catered to for a week month but to spend 5 or 6 hours on a boat driving in circles at 1.8 MPH1?  No way, José.   And the fact that they do this day after day while on vacation is a bit nutty, no?  And the fact is that they do this day after day while on vacation and don’t always catch anything legal to keep (and sometimes anything at all.) That seems a bit nuttier.  But, hey, who am I to cast the nutty stone?

Today, I don’t know if they caught any keepers, small ones or if they were totally skunked.  I neither asked nor listened if the topic arose.   But, as I’ve heard my dad say before, the worst day on the lake is better than the best day at work…and even I would have to agree with that.  So, I’m sure they had a great time. In fact, let’s just assume that.  I don’t feel like asking now.

While they were out on the lake, Monkey was stubbornly refusing to do anything at all.  I have been taking him to the dock so Grampa and Duhdee can pick him up for a couple hours on the lake but when I asked him yesterday he told me, “No, Mommy.  Stay here, upstairs.”  So, that’s pretty much what we did.  He played with some of his toys for a while but mostly just wanted to hug on me.  I can handle a few hours of that!

In the evening, after dinner2, we decided we needed to go into town for ice cream since we had not been in for ice cream yet3.  We took some, uh, bread…the ends that no one eats4…for the ducks.  There is a pond behind the ice cream shop with hundreds of ducks in it.  Back when I was a kid, the shop sold bags of cracked corn for $.50 a bag so you could feed the ducks.  Then the flock grew and grew leaving lots and lots of duck poop all over the lawn and polluting the waterline so they stopped doing that.  People will still sometimes bring their own food so the flock never disappears but it’s nowhere near as large as it used to be and the back lawn is marginally cleaner.

I can’t recall off the top of my head if Monkey has ever been to feed ducks before.  It’s pretty much banned everywhere these days because of the mess the ducks (and the inevitable Canada Geese) make.  I get it. I hate parks covered in duck and goose poop and I know you don’t want to make wildlife dependent on humans either but it does seem like such an innocent childhood thing to do and it’s kind of sad that it’s not done, IMO.  Regardless, we took our own bread5 and Monkey had a great time.  He thought it was hilarious to watch the ducks scramble around trying to get a bite of bread.  A few of the braver ones, including 2 ducklings from this year’s brood, came up on land and ate from our hands.  The ducklings, in fact, were really aggressive bordering on threatening.  I think they might have gone for our toes if we hadn’t coughed up the bread!

After we finished the ice cream and ran out of bread we beat a hasty retreat to “Grammy’s van” for an hour of moosin’.  We had a nice ride and we saw 2 moose (also, a deer, as a bonus.)  The best part of the trip though was when Monkey totally messed with Grampa, lol.  “Grammy’s van” has a bunch of drop down doors to storage areas on the ceiling between the driver’s seat and the front passenger’s seat.  Monkey kept saying, “Grampa, open!” and Grampa would open a door.  Monkey would then reply, “Noooo!” in this “You’re so silly!” tone.  Then he would try again, “Grampa, open!”  Grampa tried every door, several times, and got the same reply each time.  After a few minutes we were all laughing so hard it was hard for Grampa to talk.  Monkey was very amused with himself.

Oh!  Dinner last night was very good!  I’ve discovered my new favorite summer cocktail, “Maine Blueberry Lemonade.”  It’s Stoli Blueberi vodka, lemonade and a few squished blueberries in the bottom.  Mmmm, yum!  We had crab fondue for an appetizer, I had a sirloin and Duhdee had duck.  Gosh, I hope it we weren’t out feeding the duck’s siblings today…

  1. the official trolling speed []
  2. which was a roast, cooked on the grill…who knew that was even possible? []
  3. shh, do not tell anyone that Duhdee and I had already been earlier this week!! []
  4. the word is totally escaping me at the moment []
  5. HEELS!! []

Wilderness Edition, Day 6, no, 7. Aww, cwap! It’s Day 8, already *pout*

We’ve been really busy here the last three days.  We, uh, hmmm.  Well, we’ve been sweating, a lot.  And trying not to move too quickly and trying to avoid stepping foot anywhere not covered by shade or a fan, preferably both.

What else?  Let’s see, Grampa had a birthday!  He is now ___!1  And he retires in 7 months!  Go, Grampa!  We had chocolate cake!  And a, uh, scented candle for … Monkey to blow out?  Grampa didn’t seem to mind too badly 🙂  It was way too hot for birthday candles and the cake was too small to support the proper number anyway, lol.

Then, Grampa, Duhdee and Monkey went fishing!  The newly repaired boat is finally, really and truly, repaired!  Woot!  They were able to get out on the lake for the first day of actual fishing on Day 7 and Grampa caught a salmon.  Then, we2 ate it.  They went back out today and caught a brook trout as a group effort.  Somehow this brook trout managed to hook itself on Grampa or Duhdee’s hook and then went and got Duhdee or Grampa’s hook caught on the hook already in its mouth.  They’re both laying claim to it but I’ve already told them that I don’t care who caught it.  I’m eating it!  Monkey reeled in his first fish today too!!  Duhdee caught it on video.  I’m not sure if I’ll be able to share it or not yet.

While the menfolk were out fishing I amused myself by doing 3 loads of laundry at the un-air-conditioned laundromat, can you stand the excitement?  Heh.  I did get a chance to read, uninterrupted, for an hour and a half!   That, I liked.

Last night, after another day of brutal weather, Grampa, Auntie, Monkey, Duhdee and I went swimming in the pond.  The little minnows were very hungry, apparently, they were practically swarming.  If they were longer than 1”and had teeth of any real size they could have been scary.  Monkey loved the pond, of course.  After a dip we took a spin on some of the dirt roads around the pond and on the ridge behind it looking for wildlife.  All we found was more dust so Grampa had to wash Grammy’s van when we got back.

Today, while the menfolk were out fishing, again, Grammy, Auntie and I went to the nearby Strawberry Festival.  There’s a community garage sale, lots of arts and craft booths and, of course, the strawberry shortcake tent.  There is a gentleman, who is there every year, who makes the coolest wooden planes, trucks, trains, skidders, bulldozers, etc.  If it has an engine and a little boy would obsess over it this guy makes it.  They’re so cool!  Monkey has one of his 6 foot long wooden trains (it’s massive) and a car carrier (the top layer actually folds out so you can drive the little wooden cars on and off of it!) from past years and today I added a tractor-trailer.  The trailer is actually a bank, very nifty.

We ended up spending a little over an hour there checking out all the tents and then we scarfed down our shortcakes in the one shady spot we could find.  In the firehouse with the ambulance (singular!), fire truck (singular!) and rescue boat (singular!) This is a small town, lol.

Tonight Duhdee and I have dinner reservations for our date night.  The restaurant is in an old log lodge overlooking the lake.  It’s not air-conditioned so we’ve got a table on the upper deck.  Of course, now, it’s starting to look like rain.  Figures!

Hmmm, maybe I’ll even try to post some of these blogs I have built up!  There’s really not a lot to do in town on a date night, lol.

  1. Of course I know how old my father is!  I don’t even think he’d care if I told ya’ll.  He’s 59 and clearly a rock star to be retiring so early.  I think he’ll have worked at this company for 40 years when he retires.  Total rock star, I tell you. []
  2. Not me though, I don’t like salmon. []