Life with Fragile X Syndrome

Keeping up with the potty theme.

Melissa

We bought Elmo’s Potty Time last spring, hoping it might interest Monkey and jump start our potty training efforts.  It would not be an understatement to say that Monkey hated this DVD.  He wouldn’t even watch it long enough to see Elmo, as soon as he heard Elmo’s voice he would shut the DVD off and/or run from the room yelling “No! No! No!”

Over the last week Monkey started to soften toward the DVD and now he’s full out obsessed with it.  I hear “Emmo!” constantly.  I am more than willing to turn it on upon request so he has seen this DVD about 6,000 times this weekend.

Then on Sunday night, Monkey stripped off his diaper again (in full view this time) and, after throwing it in the garbage, disappeared into his bedroom.  He returned a few minutes later carrying a pair of the long ignored “Cars” underwear I had bought months ago.  He then stood and got them 1/2 way on before he asked for help.  What the heck has gotten into this kid?

We’ll take it but sometimes he makes my head spin!

A terrifying sight.

Melissa

Yesterday afternoon Monkey walked into the living room, completely naked, and asked me for a ‘per!  When I stood up he turned to walk to his room and I got an eyeful of a rather dirty bottom.  Ack!

“Monkey, where is your diaper?!?”

He ignored me and continued into his room.  I quickly got him cleaned up (I’m not sure I’ve ever moved quite that fast, actually) and began searching for that messy diaper.  I checked our bedroom, including under the bed, nothing.  I checked the bathroom, nothing.  I checked Monkey’s garbage and his laundry hamper, nothing!   Ack!  Finally, I went to the kitchen garbage can and found it safely tucked inside.  Phew!

I knew it couldn’t stay hidden long, lol, but my, oh my, I was nervous for a few minutes.

Keep away?

Melissa

I wonder where he learned this game.  Monkey totally took me by surprise earlier today by holding the remote control for our television in my direction and then snatching it away and laughing at me when I tried to take it.  He then proceeded to offer it and snatch it away, laughing hysterically each time, until I finally gave up.  Little booger.

Amazing.

Melissa

Amazing is currently the most overused word in our house.  We’ve used it about Monkey’s behavior at family gatherings, his newly emerging participation at school and his always creative communication strategies.  He really just seems to be on a roll these days.

Monkey had yet another amazing day yesterday.  The three of us stayed home all day and Great Grampy joined us for the afternoon.  Monkey was still rather shy at the beginning but he did fairly well.  He mostly helped Duhdee cook while Great Grampy and I sat and chatted about his life growing up and all the different places he lived and worked.

After dinner ((Duhdee’s rack of lamb was great!  He’d never cooked it before but he followed Alton Brown’s recipe and it was very tasty.)), however, there was an amazing transformation.  Monkey brought back a piece of his Thomas Trackmaster train track sets.  Duhdee was sitting next to Great Grampy and we thought Monkey was taking the track to him but Monkey made it very clear he wanted Great Grampy to have it.  He brought back a few more pieces and continued to hand them to Great Grampy.   We moved down onto the floor and Great Grampy helped Monkey set up a track.  Monkey then began handing the Thomas engine and various cars to Great Grampy to assemble.  It was amazing!  The child who normally tries to distract Great Grampy from looking at him ((Typically, he will point at the sky (or ceiling) to get Great Grampy to look up.  Outside he is hoping there will be an airplane to distract Great Grampy, I’m not sure what he thinks Great Grampy will find on the ceiling though.)) was sitting only inches away from him and making eye contact and being very demanding, actually.  It totally made our day and Great Grampy looked pretty pleased himself.















Our first research study!

Melissa

We received an e-mail about a study being planned at the Waisman Center in Wisconsin.  This is the first study that I’ve seen that Monkey fit the age range for and we decided to inquire.  We’ve been accepted into the study so we’ll be making the trip sometime next spring.  In case anyone else is interested I’ll include the e-mail here.

Hello

We are recruiting families for a longitudinal research project designed to investigate the language learning difficulties of boys who have fragile X syndrome and the ways in which autism symptoms might contribute to those difficulties. Boys with fragile X syndrome between 4 and 10 years of age are eligible to participate. Participation would require visiting the Waisman Center on the campus of the University of Wisconsin-Madison. The costs for eligible travel expenses, including hotel and airfare, will be covered by the project. Because the project is longitudinal, we will ask families to return for additional testing 1.5 years after their first visit. For more information and to learn if your son is eligible, contact Dr. Len Abbeduto (abbeduto@waisman.wisc.edu or 608-263-1737) or Susen Schroeder, M.A. (sschroeder@waisman.wisc.edu or 608-263-5145) or Emily Porter (ekporter@wisc.edu or 608-263-5145). This research is approved by a University of Wisconsin-Madison Institutional Review Board for the Protection of Human Participants.

Leonard Abbeduto, Ph.D.
Charles J. Anderson Professor of Education, Department of Educational Psychology
Associate Director for Behavioral Sciences, Waisman Center
Director, University Center for Excellence in Developmental Disabilities, Waisman Center
University of Wisconsin-Madison
Waisman Center
1500 Highland, Room 463
Madison, WI 53705
phone: (608) 263-1737
fax: (608) 263-7710

Still here…just sick.

Melissa

Migraines, stomach viruses and migraines again have laid us all out over the week or so, very bad string of luck we’re having here!   Monkey missed 2 days of school this week due to illness and 1 due to an early release day.  He is not the least bit upset by that!

He’s been filling his time with Curious George*, trains and computer games.  The train play is quite cute.  He’s having us build new tracks each time.  He will play for a while then he tears it apart and puts it away.  He seems to like having a new set up each time.  It’s definitely more fun for me, he’s usually not a fan of experimentation but he let’s me get away with it on this.  I We want more track, maybe Santa will bring me Monkey some.

We’ve also been watching some of the new Thomas episodes, the new CGI versions are definitely different.  I’m not sure if they’re creepy or cool.  Duhdee is not a huge fan, he keeps complaining that the people aren’t supposed to move.  Progress is so hard on some of us.

*Since WHEN is the Man in the Yellow Hat called TED??  Did I miss that part of the book or did the movie just make that up?

He did it, he did it, he did it!

Melissa

We have p**p in the potty.  I am SO excited!  I should probably be embarassed by how excited this makes me, actually.

The school seems to have created a potty monster but I’m not going to worry about that.  They are using PECs and Monkey has learned that if he grabs the “bathroom” picture and signs “potty” he gets to leave the room and go to the bathroom.  It’s the perfect escape and he has quickly trained them.  He’s totally taking advantage of it and they’re realizing that they’ve created a monster. 

This morning he didn’t want to go to class, he was not very well regulated at all for some reason.  As soon as he “checked in” to class he grabbed the bathroom picture and was granted a field trip, lol.  His lead teacher looked a bit put out, she knows what is going on but…that’s their problem!

When will this stop surprising me?

Melissa

Jennifer mentioned in a comment that she told her son Kyle that he was not going to wear pullups at night anymore and he responded by staying dry after that.  I tried a bit of this last weekend with Monkey.  I put boxers on him and told him he needed to tell us if he needed to go p**p and he could either go on the potty or go in a diaper.  He chose a diaper.  I was pleasently surprised and hoping it would continue.

Color me gobsmacked because it *has*.  Duhdee has not been putting boxers on Monkey, he’s still wearing diapers during the day, but he is consistently telling us when he needs a new diaper.  Two nights ago he went p**p in the diaper and as soon as he was done he went to the toilet, took off the diaper and I helped him flush the contents.  This is HUGE people!  Maybe we can get this kid PT’d afterall!

I know Monkey understands way more of what we say than he can communicate, I’m not sure why it takes me by surprise every time he demonstrates it though.

Things are quite quiet.

Melissa

Today is the first day I’ve felt “right” in a while.  I was down and out with a migraine most of Saturday and Sunday, yesterday I was well enough to work but I was still exhausted from the weekend of pain.  Today, my husband said I have a “glow” so that must mean I’m looking human again.  He has such low expectations of me these days, lol. 

Just because I was miserable, though, doesn’t mean life didn’t carry on.  On Saturday, Duhdee and Monkey spent time outside playing and doing fall clean up.  Our next door neighbors were out with Cupcake and so she and Monkey played in the leaves together.  Saturday night Monkey fell asleep in the exact position I layed him down in on his bed.  Duhdee did a very good job of wearing him out.

On Sunday Duhdee was running around like crazy doing errands then he took Monkey to a birthday party for a friend.  Monkey had a really great time bowling, it was the first time he’d ever gone and he loved it.  We’re going to take him back for a family trip sometime soon. 

And that is it for goings on, pretty boring really…but I’ll take it 🙂