Fragile X Conference

One Day Fragile X Conference in Connecticut

Melissa

The Fragile X Society of Connecticut is hosting a one day conference again this October!  Marcia Braden, Ph.D. (Colorado Spring, CO) Karen Riley, Ph.D. (University of Denver), Don Bailey, Ph.D. (RTI International, NC), Sharyn Lincoln, M.S., CGC (Children’s Hospital Boston) and Jonathan Picker, MB ChB, Ph.D. (Children’s Hospital Boston) will all be presenting.  See the attached poster for more details and also the attached registration form.

Conference Poster

Conference Registration Form

Duhdee and I will be spending Friday night (October 15th) at the hotel.  If anyone else is there and wants to grab dinner, drinks (or dinner & drinks *ahem*) drop me a message through the “Contact Us” form so we can arrange a meet up.  I’d add coffee on the 16th but early risers we are not 😉  There is a break for lunch though so we could do a lunch bunch!  Do I sound desperate?  I do, don’t I?

I must apologize…

Melissa

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.

Melissa

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!

Melissa

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.

Melissa

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 sitter ((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!)).  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 ((Any physicists in the house?  I could use a little help on this one.)).

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 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! ))!!!!  And if you’re not…bugger :-(.  Next time?

Fragile X Conference

Melissa

I wanted to be sure no one missed this.  I don’t think many people go back and read the comments to old posts!

Susan says:

As a native Detroiter I am thrilled to welcome all of the FX community to our area. I would like to make a few suggestions if you find yourself with time to step out of the awesome conference events.

  1. Check out the Detroit Insititute of Arts – it is magnificient. I loved it as a child and appreciate it as an adult.
  2. Lots of great expensive and not restaraunts around downtown including Greektown.
  3. Eastern Market is a Detroit insititution and really fun; farmers, music, food and people watching.
  4.  The Detroit Zoo is about a half hour from downtown and is one of the best.
  5. The Henry Ford (you’ll have to look at the website; too much to list here).
  6. The tunnel to Canada; the bridge back.
  7. Walk along the Detroit River front and you will see Detroit around you and Canada right across the river.
  8. There are several entertainment venues downtown; check for who/what is happening.

Much more but you’ll be kept pretty busy with the impressive conference offerings and again. We’re exciting you’re coming our way.

Thank you Susan for the suggestions!

Also, the preliminary agenda is available, there are now tentative days/times for each of the conference sessions.  Check it out here. (pdf file)

Fragile X Conference

Melissa

This past Saturday the Fragile X Society of Connecticut hosted a conference at the University of Connecticut Health Center.  We left Monkey with my parents in Maine and made the trek down there with high expectations.  It was fantastic!  So fantastic that I can honestly say it was worth having to get up at 5 AM. 

The presentations were…nerve wracking and inspiring.  Nerve wracking because I don’t like to think about FXTAS and I don’t like to think about the challenges Monkey will face as an adult.  Inspiring because of all the amazing research going on.

I’ve been such a good little ostrich regarding FXTAS, I really and truly did not want to know anything.  This was a pretty good wake up call.  My husband kept elbowing me and staring at me as Dr. Hagerman listed off ways to protect yourself.  If taking vitamins, getting exercise and reducing stress will keep me around and functioning longer for my husband and my son…well, I’d be stupid not to make the effort.  *Sigh* I hate exercising. 

We are going to add l-acetyl carnitine to our current supplements (folic acid,  multi-vitamin and Coromega.)  We’re also going to pay closer attention to our antioxidant intake.  We get some now from foods but I don’t know how much.  Probably not enough so I see raisins in Monkey’s future.  Poor kid, how awful 🙂

Dr. Hagerman touched on minocycline as well.  She showed slides of the sort of tooth staining that is a potential side effect and showed porcelain caps.  It seemed like a not so subtle nudge that HELLO this might really help your kids and the potential side effects are easily fixed!  Now to see if we can get a prescription.  Monkey doesn’t have acne.  It would protect him from Lyme Disease which is, obviously, a concern in our neighborhood.  I wonder if that would fly.  Prophylactic antibiotics?  Sounds iffy, even if we get the prescription I’m thinking the insurance company won’t pay so it would be out of pocket.  I’ve seen estimates of $40-$170/month.

THEN of course she discussed baclofen.  They’ve lowered the minimum age (except in Boston and NY) to participate in the trials to age 6.  Eight months away.  We should see some results published by then *fingers crossed*

While we were there two people mentioned that they’d read the blog so *HI!*  Duhdee made fun of me and made a crack about me being a “rock star.”  But then we saw a real rock star…

Yes, ladies and gentlemen, Dee Snider was in the house!  Woot!  Duhdee has no idea who he is BTW.  He makes me feel old sometimes.

 

 

 See, totally worth a 5 AM wake up!

The Fragile X Conference

Melissa

So, it occured to me that it was going to take me a long time to get all my notes together and that the end result would be a very long post.  I’ve therefore decided to share some of the tips, resources and information in a series of smaller posts.

Today is Resource No. 1 – Mouse and Tracy were asked about using “Time Out” for our kids.  They directed everyone to this article from the April 2006 National Fragile X Foundation Quarterly.  We’ve already altered how we use time-out as a result. 

10 rules of time-out

 

Just at the right time…

Melissa

On Saturday, Duhdee and I attended a one day conference hosted by the Fragile X Society of Connecticut.  The presenters were…Tracy and Mouse!  The topic was “Hyperarousal, Sensory Integration and Motor Planning Issues:  Day to Day Strategies for Home, School and Beyond.”   It was the PERFECT conference at the PERFECT time.

We are sharing the materials and our notes with the team at the Wednesday meeting.  The conference reinforced what Duhdee and I have known all along.  Monkey is in the right type of classroom.  It might not be the exact right integrated classroom but he is in the right setting.  We are being beaten down by the team on this.  I even told Duhdee late last week, “Maybe they’re right…”  Of course, Duhdee has never waivered but I was loosing heart a bit.  The opposition from certain team members seemed insurmountable. 

They may still try to force us to put him in a substantially separate classroom but it’s going to mean going to arbitration because the conference has reinvigorated us.  We were right last year and we are right again this year the integrated setting is non-negotiable. 

If anyone would like a copy of the materials please e-mail me.  I’ll share some of the highlights in another post as soon as I can get myself organized!