Counting Down to Duke

A week from tomorrow, Ian and I will be leaving for his first appointment at Duke.  After he gets home from school on Monday, February 4, we will get in the Trooper and drive to Chapel Hill.  Although the study would put us up in a hotel, I think for at least the first visit we will stay in a familiar place to both of us, my sister and brother-in-law's home.
 
Now that the time is approaching, I am starting to have a tiny bit of apprehension.  What will all of this be like?  Will I remember all the things I need to bring for Ian?  Will this change in routine totally freak him out?

 We have participated in several studies before; one at UNC and one at the University of Wisconsin.  The UNC study involved MRIs of the brain to check for differences between Fragile X and the rest of the population.  This involved Ian being sedated, and let me tell you, we had an interesting drive back to Richmond after that!  Like his Mom, Ian and sedation are not best friends....

The study in Wisconsin was more about behavior and language and was quite informative and interesting.  The worst part of that one was the blood draw at the end, ugh!
 
But, this study will be quite different.

 First of all, it is a big commitment.  We have 6 appointments and we were nicely told that we are expected to be at all of them, barring bad weather or some kind of emergency.  I have no problem with that; this is quite a big deal and I'm sure there is a lot of money involved.

Second, this study will involve medication.  We are not new to medication, but I know that Ian reacts better to some than to others.  Of course, since it is a double blind study we may not be on any medication at all.

Third, Ian will have to miss some school for this one.  All of our appointments are on Tuesdays, so he will miss 5 days altogether. (one of the Tuesdays is during Spring Break.)  I'm hoping his routine isn't disrupted too much; this is the only time we can do this.

I put a short article about our upcoming "adventure" in the newsletter at my church.  I told them a little bit about Fragile X and how it affects Ian and asked for their prayers to help us through this next challenge.  The response has been incredibly heartwarming, and I have been deeply touched by the care and concern.  In the article I encouraged them to ask questions, and they have.  And I also invited them to follow this blog.  We are blessed to have this loving group of people in our lives.

Birthday week

Ian's almost eleven!

Okay, seriously, how did this happen?  People say it goes fast but when you're in the moment it can seem to drag on and on, especially with a child whose development is glacial.  But, I can still remember the time around his birth day like it was yesterday!  

A few days before he was born we had snow, which is not something we see a lot of here in Richmond, even in January.  I woke up and saw it and worried about whether it would snow on January 10th, which was the day for the planned C-section.

I remember going to Target to buy some last minute things and having a woman come up and start going on and on about how I should really get a doula.  What?  I didn't even know this person!  

I remember seeing the little scrunched up face for the first time, and the joy of holding this little man at last.  Love at first sight and touch!

I remember coming home on a cold and clear winter day after 4 long days in the hospital, and being so happy to sleep in my own bed again...even though there wasn't much sleep!

I remember our first walk around the block, and the long nights, and the poopy diapers, and the general exhaustion.  I remember it all.

But I still have a hard time believing that it all happened eleven years ago!

Holiday Review

Overall, the holidays went well for Ian.  For Christmas, he did not get a new iPad or anything flashy.  I bought him some clothes, a new coat, and his "Santa gifts" were Mickey Mouse things...a stuffed Mickey, a book with a lot of his sight words, and a travel cup.
On Christmas morning, he was very excited with these things.  We have learned over the years that he is not like a "typical" kid when it comes to opening presents.  He actually seems downright reluctant to do it.  So we start out with the Santa gifts, have some breakfast, and then ease into the rest of the presents.  You just cannot be in a hurry.

Probably the most excitement was when Ian opened a surprise gift from Rob.  I didn't know what it was either, so it was really fun when Ian opened up a Sponge Bob doll!  I'm using this picture, even though it's blurry, to show how Ian reacted to this present.  He literally ran around the house like a little nut.  It was so funny!
After opening our presents we went to Grandma's house for Christmas dinner.  Ian went into his usual mode, which is watching DVDs on his portable player while the adults did their boring stuff.  He walks into Janie's house, sits in the same chair he always sits in, and that's it.  It bothers me, but what can I do?  Of course, most 5th graders would be glued to a DS or other game system, so I guess it's not that different.  But still.  He will absolutely NOT open presents or sit with us at the table, no matter how we try to persuade him.  So, after dinner and presents, we left and came home.

It was a big day for Ian, with the presents and the travelling and everything.  I've started a tradition of sorts, where I take a picture of Ian in bed with his new toys on Christmas night.  I'll close with that.

A good field trip!

Ian's class went on a field trip today.  They have been doing several a month this semester, and I always kind of hold my breath and keep my phone handy on those days.  But, he seems to be getting the hang of it, and I am so very grateful!

The teacher does a simple daily sheet with smiley faces every day.  It helps me know in general how his day went.  This was today's sheet; I feel like framing it!

This field trip was to a local mall.  The objective was to work on math and social skills.  I sent in $14, all my cash!  They were to eat lunch in the food court and do some shopping.  I checked the website to make sure the food court had something Ian would eat, and thankfully they had a Chik-Fil-A.

So, I opened up Ian's backpack when he got home and there was the plastic bag I had sent the cash in, with just some coins and a receipt.  Also, there was a wrapped package with a typed note on top.  Ian had bought a present for Rob and me and wrapped it at school and typed the note.  What a big day for him!  I am so proud.

Here is the package, along with one he did in Art class a few days ago.  I cannot express the joy of actually having presents from my child that he made and bought himself.  This is starting to be a very cool Christmas!

Cookies, part two

 Today we finished the cookies for Ian's class party.

First, we started with the icing.  It took a few tries after I showed him, but he did pretty well with it.  He seemed to want to dab instead of spread, but we eventually got it figured out.

 Then we did the sprinkles.  This consisted of me asking which sprinkles he wanted to use, him making the choice, and me helping him put them on.  The highlight of this was when I asked which ones he wanted for the Christmas tree and without hesitation he chose the green ones.  Yay!

In the second picture, Ian is trying to hand me a cookie.  He did that several times saying, "For you, Momma!"  Sweet boy!

Altogether he did half a dozen cookies!

Yes, I did have to bribe a little to get him to do this.  But, once we got started there was no complaining and he really did try his best.  I think this will be something I will always treasure about Christmas 2012!

Cookie Time

Wow!

After years of trying to get him interested in making cookies with me, Ian not only did just that today, he used a rolling pin!

Then, he used cookie cutters and cut them out!

And finally, he posed with the finished product!  Wow, wow and wow!  This is a red letter day!

Newtown....Incredibly Close

The tragedy in Newtown, CT happened last Friday.  On that afternoon, I watched the coverage non-stop until Ian's bus got here at around 2:45. I hugged him all the way from the steps of the bus to the front door.  I did not want to let go.
I did not watch or read much of the wall-to-wall coverage on Saturday or Sunday.  I just could not take it.  I also did not find much refuge on Facebook, so I pretty much kept away from that.  The news kept changing as to who did it, who the victims were, etc.  By yesterday, when Ian went back to school, I thought I was ready to read more.  It turned out I wasn't.  And today, well today has been the hardest yet.  It turns out one of the victims was a 6 year old boy with autism.  He was in the arms of his one on one aide when they were both shot and killed.  Just how am I supposed to deal with that?  It is just way too close to home on several levels.  And now I just read that another para was killed.    She was about to complete her doctorate and her boyfriend was set to propose on Christmas Eve.
Yesterday I watched the movie "Extremely Loud and Incredibly Close."  I had requested it from the library before any of this happened, and I was feeling a little rundown and wanted some down time.  Although I had seen this in the theatre and had my Kleenex ready, I cried and cried.  I kept thinking how, like September 11, this tragedy was going to reverberate through our country for years to come.  In the movie, the little boy is trying desperately to hang on to the memory of his father.  I keep thinking of the parents and siblings and children and friends and classmates who will be trying to do the same with the victims of this tragedy.  While the rest of the nation will be arguing about gun control, mental illness, school safety and other issues, the families left behind will be going through a private hell that we all hope to avoid.  They are the ones I will keep in my prayers.