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!

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!

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 sitter.  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 time.

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 there!!!!  And if you’re not…bugger .  Next time?

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, “tipsy.”

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 speeding…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, campt!”  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???

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!

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, “Lissa, 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!

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 dinner, we decided we needed to go into town for ice cream since we had not been in for ice cream yet.  We took some, uh, bread…the ends that no one eats…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 bread 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…

What else?  Let’s see, Grampa had a birthday!  He is now ___!  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, we 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.

The first bit of trail was really muddy which is totally Monkey’s thang.  “Splash!” is a near constant refrain here.    The rest of the trail was dusty, dusty, dusty.  It hasn’t rained here for a while and it definitely showed.  Grampa’s eyes were bothering him because he wasn’t wearing goggles and he rode the whole way home at the back of the 4 quad caravan.  He had goggles.  He chose not to wear them.  I wonder if they clashed with his outfit.

The dust didn’t really bother my eyes but, hours later, I’m still blowing dirt out of my nose and the insides of my elbows are not even remotely skin colored.  A good shower and a box of tissues will fix that.  I’m not sure I’ll ever regain feeling in either my @$$ or my arms though.  Not that I need those, right?

After breakfast there are hours and hours of playing ball.  The best part is that there are so many grown-ups around that there is a new one to step in each time he exhausts one!  Yay for endless playmates!  If playing ball ever gets boring (hey, it could happen) there are always rocks needing to be thrown into the brook, butterflies to be chased and dogs to be teased.  Earlier Grampa dug out a beach ball about ¾’s the size of the Monkey-man so the chances of ball playing getting to be boring today are slim to none.  I’m not going to break that bit of news to my nephew who has been on ball duty for 3 hours now.  Oh, to be 18 again!  Ha!

Have ya’ll ever had a Trashcan Turkey?  I know how it sounds but it is yummy!  The turkey is placed vertically on a spit stuck into the ground.  A small galvanized trashcan is placed upside down over the turkey.  Then BBQ briquettes are placed around the outside base of the trashcan and on top of the inverted can and it’s left to cook for a couple of hours.

I’m a little vague on deciding the doneness of the turkey but I know it involves either the beginning or cessation of some noise or other.  Clearly, I’m not a qualified trashcan chef.   Fortunately, there are a number of folks here with us who do know how the process works.   No one of us has ever died from food poisoning after consuming one so they must know what they’re doing, right?  One year the poor little turkey came out rather…mummified…but the technique has since been refined.

Lunch will be a well-executed potluck -style meal for, errr, 12, I think.  Trashcan turkey, pasta salad, stuffing and strawberry cupcakes with cream cheese frosting are on the menu.  There will probably be other stuff too, if there is one thing we know how to do here it is eat.   Oh, and drink.  Cocktails will start on the deck at lunch today; and will continue until bedtime, lol.

I’m hoping bedtime comes a little bit earlier tonight than it did last night.  After putting Monkey to bed about ½ hour late we all went about our business.  Around 10 PM he called me upstairs, I tried to get him to sit by the campfire but it was a no-go.  I think he was freaked out by the dark.  “Dark” up here, far from any town, is a lot darker than “dark” at home surrounded by thousands and thousands of homes and streetlights.  I’m fairly sure he never got more than two hours of uninterrupted sleep.

I wonder if there is any chance he’ll nap?  Not really.  I’m acutely aware that he’ll be up until 7:30 or 8 again tonight, no matter how painful it is for all involved.

**Updated later**

Cocktails started promptly but the turkey took a bit longer than expected.  That is my excuse for, uh, smearing whipped cream in MY MOTHER’S FACE shortly after we finished.  In my (very limited) defense, she had been laughing at me because my perfectly styled whipped cream had just fallen off my cupcake and landed on the counter.  She was totally dissing me, within arms-reach even, and I had had cocktails (plural!)  I’m an awful daughter.  She’s promised revenge, though, so at least we know where I get it from.