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!

Clinic visit April 19

 We had our fifth visit to Duke on Friday, April 19.  I actually had to double check my calendar to make sure that was right...five visits are done!  We only have one left, and that will be on May 8.

The back seat buddies

 The sheer logistics of these trips has been interesting and challenging at times.  Ian is generally a good traveler, but we have to have everything in place to make things go smoothly.  In the car he watches movies on his portable DVD player.  We have snacks with us to minimize the number of stops on the road.    Of course, things have gotten much simpler.  We used to have to travel with the pack and play, the high chair, diapers, bottles, etc.  Now I just have to remember the electronics and all the accompanying chargers!

I'm not without my entertainment needs.  While Ian watches Kung Fu Panda for the 900th time, I'm listening to an audiobook on the GPS Rob gave me for Christmas.  The drive between Richmond and Chapel Hill is a fairly boring one, so I have to do something to keep alert for almost 3 hours each way!

The North Carolina Welcome Center

 Now that Ian is 11 (although he looks much younger) taking him into the ladies' room is getting a little awkward, so I'm thankful for the North Carolina Welcome Center.  It's about halfway on our trip, and it's always clean and they have a very nice family restroom.  I highly recommend it if your travelling that way!

Another one of Ina's cocktail recipes

 We arrived at Mary and Jim's in time for the evening news and cocktails.  The pictures of the suspects in the Boston Marathon bombings had just been released.  Mary had made another fantastic meal and we had a nice evening.  I'm so glad we had the chance to stay with them for 4 of our visits.

The view from the parking garage

 On Friday morning, Ian had to have his first dose of medicine at 5:30 so we actually got to Duke early.  We're old pros now with the parking garage routine.  And here is where Ian started doing some really nice things.  We usually take the elevator down to the level with the "bridge" over to the clinic, but it was running slow and there was a HUGE crowd.  So, we took the steps, even though I was worried he would freak out with the change in routine.  Not a bit, he just followed me like it was the way we'd always done it.  Then, instead of going to the clinic, I wanted to go to the Food Court for some coffee and he did that just fine too, even though the line at SBC was too long and we turned around and left again.  Oh, and this is all without the iPad in hand.  Woohoo!

So, we had a (mostly) fantastic visit! Right off the bat  Ian had an accident in his pants, which I was thankfully prepared for.  I was worried that would mess up the whole day, but he turned it around and was the best patient he has ever been!  Blood pressure, temperature, EKG, his behavior was perfect with them all!

Ian was a model patient

 On his first visit the EKG was extremely hard.  It took 4 of us holding him still to get it done.  On this visit, he did it all on his own!  He was quiet and well-behaved while I had an interview...

He sat quietly while I had an interview

 he did great in the noisy and crowded food court...

Lunch was a little late, and he ate his fries and mine too!

 and he listened and followed directions during his physical with Dr. Lachiewicz.

Ian with Dr. Lachiewicz

 He especially liked her hammer to test reflexes and copied what she did.  On our first visit, he wouldn't even let her look in his ears.  We've come a long way!

The bridge to the garage

 Finally, it was time to walk over the bridge, back to the garage and our car.  He knew we were headed home to Daddy, Ashby and Pups, and he was happy.  Another successful visit to Duke!

An "Ah Ha" Moment

This will be a quick post because I want to get it down before I forget about it.

Ian's first day back after Spring Break was today.  Typically he has a rocky day or two before settling back down into the routine.  On his daily sheet he got a "frownie" for his keyboarding time.  He smacked the keyboard and said "Shut up."  Once I read this, I told him he would have to do some keyboarding time with me.

To try something new, I put his dry erase board/chalkboard combination next to my desk and wrote down the words, one at a time, and had him copy them.

At first he was annoyed with me and the whole thing.  I reminded him that he had misbehaved and would have to earn back his iPad time.  Things started to turn around.

Then he kept mixing up "m" and "n" but that turned around too.

I picked some words randomly, twelve total, and made him type them all.

As we got to the end, he was GETTING IT.  It's difficult to explain, but he was sounding out the letters and reading the words back and HE WAS ENGAGED.  I've been doing homework with him for a long time, and this was the first time it felt like something "clicked" and it was amazing.  Simply amazing.  I had a glimpse of the child that I know is in there.  We just have to get the noise in his brain turned down and I think he will do just great.  I think that the STX209 may be working just enough so that moments like this are possible.

My previous post was a hard one to write, and I know for some it was a little hard to read.  I was down, I was stressed about middle school transition, and it came out in that post.  But that is my world.  Those days make days like this one even sweeter.

Catching Up

Since my last post, we have had another visit to Duke, Easter, and Spring Break.

Our most recent clinic visit was on Tuesday, March 26.  It was a busy day for the clinic staff, with 4 families there at once.  Ian and I were put up on the third floor in a nice quiet room by ourselves.  Once he got over the fact that we were not in our "normal" room, he settled in fine.  The day was mostly uneventful and we were out of there fairly early and back in Richmond in time for rush hour....


At this point, we are now in the part of the study where the medication dosage (whatever it might be) will stay the same for about 4 weeks.  Prior to this, the dosage was gradually increasing.  At this point, I'm wondering if we are on a very low dose or even a placebo.  Ian continues to be very withdrawn .

Ian and his Sponge Bob Easter basket

 I was hoping he might have more fun on Easter, but he was very reclusive.  Yes, we did have people over for Easter dinner, but he chose to steer clear as usual.  He showed minimal interest in his Easter basket, as usual.

After our dinner, we went outside to play croquet.  Ian did show a bit of interest, but it was short lived.  He was mainly interested in following the dog around.  Have I mentioned that holidays can just be so hard?

Ian with Grandma and the boys for croquet on Easter

Spring Break is the week after Easter this year.  Rob has school, so we didn't make any plans to go away like we did last year.  Trying to keep Ian occupied and engaged is a challenge, and I am so ready for him to get back in his school routine.

On Tuesday I took him to see The Croods, and that went quite well.  Even though the theater was crowded, and sometimes noisy, he did great.  I brought the old iPod along for him to have something to hold onto when we left the theater; I've learned that that is hard for him with all the people and noise and darkness.

Going to the movies

On Wednesday we ran some errands.  We went to the recycling center, Target, Goodwill, and our local garden center.

Making silly faces for the camera at Target

Ian had great fun at Target and was rewarded with a DVD.  He picked out a Max and Ruby Easter DVD, which was okay seasonally, but not age appropriate at all.  I was hoping he was growing up with his TV choices when he started watching Teenage Mutant Ninja Turtles, but now we have some regression.

On the way to the Garden Center, he kept talking about seeing Brian and Mike.  Mike is the owner and Brian is his grown son.  They are the kindest people and have known Ian since he was a baby.  Brian got Ian a wagon to play with while I picked out some flowers.  We had a good visit.

Checking the iPod while Maryanne packs up our flowers

 When we got home, "we" dyed Easter eggs.  Ian was not especially interested though he participated more than he has in previous years.  Of course, he got sidetracked looking for a lid to a container for awhile and when he put the eggs in the dye things got kind of messy.  But, we did it.

Looking for a lid

The weather improved and we've spent a lot of time in the yard.  Soon we will plant our "garden" again like we did last year.  In the meantime we are working on transition to middle school and looking forward to our next visit to Duke on April 19.

An up and down kind of week

Our adventure with STX209 continues.

Since my last post on Monday, Ian has had some rough times at school and at home.  On Monday and Tuesday he came home with only 5 out of 6 smiley faces, and the teacher noted that there seemed to be more anxiety than there had been in previous weeks.

But there have also been more words, and more speech that makes sense.

On Tuesday night, I was trying to get him to turn on his humidifier at bedtime and he flatly refused.  What?  No, no, you have to do it.  Well, he did and then he burst into tears.

What a mean mommy!

I felt terrible because he rarely cries.  Who knows what the medications are doing to his hormones?  Also, he is 11 and the lovely puberty years are looming.  He finally settled down and went to sleep.

On Wednesday my usually happy morning guy was a grump.  During his dressing routine he screamed "Shut up!" at me and I scolded him and turned off his beloved PBS Kids.  He turned it around before he went to school, but came home with a very bad report.  Computer time had been taken away from him twice and he had actually said Shut Up 21 times.

Sigh.

When he got home, iPad privileges were suspended until he did some tasks to earn them back.  It's amazing how sweet he can be when he wants the iPad back!

Then, after dinner, the house was really hot.  I checked the thermostat (which is the kind you turn up and down on a dial) and it was at full blast!  The only one in the house who could have done it would have been Ian.  Weird!  Of course we asked him, but got no real answer as usual.  We told him not to touch it anymore.  But, who knows?  Maybe he thought since he had to turn on the humidifier, he should turn on the thermostat?  Not sure if it's a coincidence or not.

 I'm starting to wonder if we're going to have to baby proof the house for an 11 year old.  As a toddler, when most children his age were getting into trouble and making messes, he was an incredibly easy child.  We did baby proof then, of course, but he was just so NOT curious.  I can only recall one time when he got chocolate candy on a white chair.  (By the way, if you're having a hard time getting pregnant, just order some expensive furniture with white upholstery.  Just saying.)  We flipped the cushion and moved on.

Ian and the chair he got messy

Thursday was, thankfully, a better day.  Ian's class went on a field trip to a deli for lunch.  He behaved, ate his meal, and had fun on the bus.  He did well the whole day until the very end when he hit two of his classmates.  But, we dealt with that when he got home (apology notes) and he had a good afternoon and evening.  His daddy gave him a bath and when I was tucking him in he asked me for "Beach."  This is when we turn on his sound machine with the ocean sounds.  As I was doing that, he pointed to the wall behind me and said, "That's the beach."  It took me a second to catch on.  On that wall are two paintings my Grandfather did of beaches in Kauai.  I've never seen Ian show any interest in any of the  pictures we have around the house!  Loved that he made that connection.

My Grandfather's beach paintings

So, another week in the clinical drug trial is winding up.  Our next visit was moved up to next Tuesday, March 26.  It will be interesting to see what the next few days bring.