Reflections on the end of elementary school

 This was the beginning.

Walking to bus for first day of pre-K

On a cold January morning in 2005, right before his 3rd birthday, I sent my "baby" off to school.  On a bus.  By himself.  My husband was serving in Afghanistan and after that big yellow bus left I called my sister and I'm pretty sure I cried.

Ian did not.

He was a brave little trouper and although his first months in the school system were not easy for him, he has never given me a hard time about getting on the bus or going to school.

It was not the typical first day of school, and his elementary education has not been a typical one either.  It has been filled with meetings, IEPs, re-evaluations, behavior plans, visits to doctors and clinics.  He does not have a typical report card and he doesn't take typical tests.  He sees a speech therapist twice a week, and an OT checks in on him periodically.  He is in a "self contained" classroom; he cannot handle general education. Or the cafeteria.  Or assemblies.  Or field trips with his grade level.

 Every time I receive something about events for the fifth graders, events that I know Ian won't participate in, a little part of me gets very sad.  I often wonder, what if?  I try to imagine him as a "typical" kid, with friends to hang out with, bugging me to take him places, complaining about homework, thinking about his future.
But, thinking that way does not help anything, so I try my best to focus on how far he has come.

First day of 2005-2006

 And, he has come far.

First day of 2006-2007

And he will go far too.

First day of Kindergarten

 I'll never stop fighting for him.

First day of First Grade

I will never stop celebrating every single one of his accomplishments, no matter how small.

First day of Second Grade

I will never stop providing him with every opportunity to have fun and grow.

First day of Third Grade

 I will never stop laughing with him.

First day of Fourth Grade

I will adore him always.

First day of Fifth Grade

I am his Mom.  And I will continue to support him and do everything I did in elementary school when he goes to middle school in the Fall.

So, goodbye to elementary school.  It's been a great experience and we've both learned a lot!

What a good day for Ian!

It has been 10 days since Ian took his last dose in the STX209 drug trial.

Today was a wonderful day from beginning to end, and a good reminder that in spite of the events of the last few days life does go on.

Ian has been eating different foods for dinner four nights in a row.  In our little world, this is HUGE news.  The first night was pancakes.  The second night we had a power outage and in spite of all the wackiness that caused, he ate pork ribs....a first!  Last night it was hamburger and tonight it was mac 'n cheese.  This is something that we have struggled with for years, and now, of all times, it is finally happening!

Ian struggling with his dinner two years ago

Our weather today was rainy and I was wondering what we would do all day.  We did a trip to Target, and he was good as gold.  I let him use a Target gift card to buy his DVD and he handed it to the cashier and said thank you when she returned it.  He even kept the DVD in the bag all the way to the car.  Wow!

Ian at Target a few weeks ago

He ate a good lunch, never said "shut up" or "stupid" once (the words that have been vexing us off and on for months), hung out with me in his room while I went through his clothes, joked with me while we watched Sponge Bob, and did a very good imitation of Plankton's evil laugh.  He was a joy all day long!

I hope this helps the families that will have to wean their children off  STX209.  Of course we were not on  it for very long so the impact is less for us.  But our kids are still OUR KIDS no matter what medicine they are on.  We may be pleasantly surprised by what they can do when they have to stop.

At least, that's what I'm hoping and praying for.

 

The End of STX209 for Us....And Now Everyone Else

I cannot say that I am liking the year 2013 very much.

I'm not superstitious about the number 13, but I'm starting to wonder if I should be.  We have not had much luck with anything this year so far.

Last week we finished up at Duke.  It was our sixth visit since February 5th.  Our trips were mostly great.  We got to spend time with my sister and brother-in-law in Chapel Hill.  Ian was a good traveler and after the first visit to the clinic, he was a good patient.  We LOVED the staff.  Every single one of them cared about Ian and his future.  Ian got more experience with parking decks and elevators and food courts and navigating large, unfamiliar buildings.  And last week we stayed at the hotel they provided, and that was another good experience for him that we had not had in a few years.

Ian got his own big bed at the hotel

Heading to our room at the clinic after lunch

Part of the Duke Hospital complex

But, on May 3rd, we found out Ian would not be participating in the open label extension after the study was over.  We had been told there was a good chance he wouldn't, but we went ahead with the study and hoped for the best.  I was, naturally, disappointed.  But, since it seemed like the study was going so well, I just kept the happy thought that the drug would be approved soon in my head and kept on.

Until yesterday.

It was announced that ALL the families that had children in the open label extension were going to be cut off from the medication in a couple of weeks due to financial problems with Seaside, the drug company that makes STX209.

This is a huge disappointment for the entire Fragile X community.  The Facebook posts and blog posts I read last night were heartbreaking.  One family found out on their son's birthday.  Another had been on it for 3 1/2 years and saw their son blossom and now, well, who knows?

It's all about money, and that will make a lot of people angry.  It makes me angry.  When you think about the way money is wasted on so many other things, it just kills me that something that improves life in such an amazing way is going away.

Or is it?

It's still early and I'm sure there will be more information coming in the days ahead.  And, this is a dedicated and hard-fighting group.  I know they will not give up.  The fund raising events will continue, the trips to Congress will go on.  There are other drug studies in the works and participation will continue.

So, I'm asking for your prayers.  And a few dollars wouldn't hurt either.  The National Fragile X Foundation does so much for us, so if you feel moved to do something concrete about this, please make a donation to them.  Or, the next time that I post a link to write a Member of Congress, please take a minute and do it.

I was pretty good about not crying about this until a few minutes ago when I read some of the responses to my Facebook post from last night.  We are blessed with so much loving support.  We are on a prayer list in Kentucky (thanks Jenny Beth!) and at least one of our friends is spreading the word on their Facebook pages.

We are down today, but not for long.

And 2013, I'm not going to let you make me superstitious!