Post STX209 Update

I've sat down to write this update so many times and then walked away, unable to put words down.  We are living day to day and taking each hurdle as it comes - looking at the big picture of changes is really difficult for me still.  All my time and energy have been thrown into readjusting to what has become our new normal.

We began weaning off arbaclofen and started adding racemic baclofen on June 9.  We have been off arbaclofen since June 23 and on our current dose of baclofen since June 16.  Current medication is 10mg of baclofen 3x per day.

We have seen good and bad with this change.  The best part is we have not seen much regression of language.  Ayden has actually added more words to his vocabulary in the past six weeks.  The regression is seen in how often and when he is speaking.  It's very difficult for him to initiate conversations or even simple requests now.  He has a difficult time walking into another room to say hi to someone even.  He's still able to isolate most of his sounds, when we can get him to sit still at least.

Which brings me to one of the biggest changes....focus.  Sitting still.  He quite literally cannot stop moving himself or something he is manipulating.  Sitting down to read and/or work on writing has become near impossible.  We were around 15-20 minutes right at the beginning of the summer and have now regressed to around 3-5 minutes.  It has made things very challeninging for me.  If I'm not occupying his time with productive things every single minute of the day he is stimming in some way or another.

Stimming has alos gotten much worse.  Most of Ayden's day consists of him attempting to stim in some fashion.  Spinning toys is the most prevalent of those, which is not surprising as he did it so much before.  I find it interesting with the stimming that it is actually worse than it was pre-arbaclofen.   I think this is mostly due to the fact that Ayden is older now and he's learning how to deal with these urges and anxiety he hasn't had to in months.  It's a lot to cope with, and I see this as his way of handling it.

Onto the anxiety...oh the anxiety.   It's prevalent in everything he does, everything we do.  It's taking a lot more prompting and a lot less doing 'things'.  Probably the most heartbreaking for me was to see how anxious he was when we went to the splash pad last weekend.  We made sure to go at a time that wasn't too busy, and that did seem to help.  He just couldn't run through it like he previously did.  He played with some of the things on the edges, but for the most part hung back and just watched the other kids playing.  Seeing him wanting to go do something he loves and just not being able to get his body to cooperate rips my heart in two.

We have watched fairly carefully over the past month or two and thankfully have seen a leveling out of these behaviors.  That is, they are not getting better or worse.  With this all of what we have been seeing, we decided to stop the baclofen. We don't believe it is helping him and if it is - the amount is much too small.  We've been working closely with our clinic doctor and decided to try treating his anxiety and focus for now.  Our goal is to have his medication stabilized for when school begins.  Our hope is by focusing on those two issues, we will see improvements in other areas as well.

On Monday we began the process of weaning off racemic baclofen.  The past few days were pretty horrible - it was much as I expected.  Night waking, higher anxiety, more meltdowns, totaly disregulation... the poor kid is a mess.  We will more than likely add his new medication starting next Monday when we drop his baclofen dose to 1x per day.  This is going to put us on track for around 1 month on his new medication before school begins.

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Titration Week 1

Day 9

I don't want to write about this.

I don't want to think about it.

Yet I feel I need to.

Full disclosure though:  It's not as bad as I thought it would be.

It isn't good though either.

Ayden was on 20mg of the study drug, taken in two doses of 10mg each.  On June 9 we began titration and he dropped to 10mg of the study drug taken in 5mg doses twice a day.  At that time, we also added in 20mg of baclofen taken in 10mg doses twice per day.

Day 1 was really bad.  We had our first major meltdown in the morning around one hour post-dosing.   Followed by bathroom accidents, frustration, more meltdowns, and a very sleepy boy.  It was not anything unexpected, but pretty hard to take in. (Jump over to http://stx209stories.com/stx209/ayden-abouelseoud-holt-mi-update-1/ to read the full story)

Day 2 followed much of the same pattern.  He woke up extremely hyper, but more of a borderline sensory overload.  It was his last full day of school, and school noted this was the case as well.  He had a small meltdown in the morning, around one hour post dosing just as the previous day, but by the afternoon was a mess.  This is a small portion of the email from his teacher:

The refusals/meltdowns then started after special.  They lasted the rest of the day.  He went from crying, to throwing the materials, to hitting.  He just seemed overwhelmed.  He was very oral, chewing on everything.  I did have to set a timer and have him sit at the table a couple of times because he continued to hit/push and really needed a break.

I could share each day, but it is much of the same.  We're seeing a pattern of a small, 20-40 minute morning meltdown that happen around one hour post dosing.  We are then seeing a meltdown in the afternoon, also around an hour post-dosing that lasts on average 2-3 hours.  Lots of stim behaviors returning and anxiety.  He's fighting it, but it is there.  This is from day 3, and just a short clip of our entire afternoon.  It's difficult to see him like this.



The most heartbreaking thing for me to watch is honestly how much more difficult it is for him to communicate right now.  He wants to - I can SEE him trying.  He just physically cannot do it.  And then he becomes frustrated, so frustrated in fact that he can't even revert to showing me instead of using his words.  I don't think his language is disappearing even though we are hearing it less.

The good thing is that his humor that has emerged over the past few months is not going away.  He's still trying to eat our brains and scare us with yelling "BOO".  I don't think it is as often, but he's filling a lot more of his time with stimming, and escaping to a quiet place (his iPad, movies, and the pool).

As I said, it isn't as bad as I thought.  I think the baclofen is making a difference.  I've been in contact with Ayden's doctor and we've made some slight changes already so I'm hoping those will help even more.  I think she has a good idea for next steps for us as well.   We're just in a waiting period now.   Saturday is our last day of arbaclofen.  A week from today I will be mailing back 3.5 boxes of medication.  We'll have a few weeks after that to see where he levels out at (it took about 3 weeks on arbaclofen from dosing changes) and then we'll go from there.

Look for more updates as we progress.

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STX 209 - An (almost final) Update

I've often heard fragile x described as having the sound of a vacuum in your head.  Consider going through life daily with that sound.  Attempting to speak.  To walk into large rooms full of people.  Imagine how difficult it would be and how easily you could become frustrated.  Imagine then that there was something you could do to shut that noise off.  That is how I look at arbaclofen - as an off switch for that constant noise in Ayden's head.  Now we have to turn that switch back on.  Devastated does not even begin to describe the emotions running through me.  Terrified.  Worried,  Overwhelmed.  Sadness.  And tears...lots of tears.

"We regret to inform you that Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of STX209 (arbaclofen) in subjects with Fragile X Syndrome] is being terminated immediately.  The closure of the study is due to resource limitations at Seaside Theraputics, Inc., and is not related to any known safety issues in patients dosed with STX209."

You have seen our journey here.  From barely speaking, struggling socially, anxiety issues, and lack of self awareness to a little boy who was making friends, playing with those friends, playing with toys correctly, jumping into new situations with ease, going into loud places, laughing, talking.  TALKING.   What a difference six months and a little strawberry pill can make.

We were told the open label would be available until FDA approval (or lack thereof).  We were told 4-6 months notice if they were to ever stop the open label.  Things don't always go the way we expect though, and as of May 31 given just two weeks of notice, we have to begin the heartbreaking process of weaning Ayden from arbaclofen.

I took the night last night to sleep and hopefully feel better today.  I don't.  It's not fair.  The fact that this comes down to funding is just too much.   I'm hoping beyond anything else that we don't see regression.  That somehow this drug has made lasting connections that will continue.  That the drug only supplemented and helped what was already happening with Ayden developmentally.  I don't want to lose him into himself.  I just can't.  I won't.  We WILL find something.  We will do whatever we can to help him.  We always have and will continue to do so.  

We have other options for him.  We do know he needs something to help him with anxiety and focus.  We were at that point when we started the STX209 trial.  It was a good fit for us, we didn't have to wean off anything to start the trial because he wasn't on anything.   We knew this could happen.  It doesn't make this easier.

For now, I need to purge these raw, negative emotions.  Then, then I will look to tomorrow.

“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.”  - Thomas Merton


Some other parent's blogs that were involved in the 209 trial are sharing their thoughts as well.  You may click on each person to read their thoughts.  I'll update as I see more.

Holly
Melissa
Kristin
Rachelle
Bonnie
Kristie

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Advocacy Day 2013

In one of my last posts I talked about how much I really wanted to attend Fragile X Advocacy Day.  Just as I had resigned myself to being unable to attend, a couple things fell into place that have allowed me to go.  I'm so completely excited for this opportunity, I've been struggling to put all this excitement into words since I found out and still can't, but wanted to put an update on here anyhow!

Since we received Ayden's diagnosis, I have been actively sending letters to representatives and senators about Fragile X (with the help of the NFXF).  To be honest, I've never taken part in anything like writing letters or contacting representatives until then.  I've voted, I stay informed...but never more than that.  It's a shame that I haven't been more involved, really.   This past election, I found my voting decisions strongly swayed by the way elected officials dealt voting on all subjects related to Fragile X.  For the first time, I spoke out for someone running for office - one in particular, Debbie Stabenow (who I am very much hoping one of my meetings is with during Advocacy Day!)  This, is my next step and to be honest I am terrified.  I'm not good at meeting or speaking to other people, and I'm not just talking about the people I'll be meeting with on Capitol Hill  There are around 175 other people attending Advocacy Day, many of whom I follow online via Facebook, the Fragile X group, or blogs - but meeting them in person is quite different.  I had a dream the other night that I was laughed at and told I shouldn't have come and to stick to doing things online because people liked me better there.  There was more to the dream, but it certainly did not help my anxiety!

I don't really think that would happen...mostly at least.  There are quite a few people who I look up to an awful lot that are going, and I am going to be honored to meet them.  That's the other part of this really, the part that is for me.  Where I get to finally meet other Fragile X parents.  The ones that have been there for both of our diagnosis and helped with IEPs and behavior issues, cheered me on when I have been down, and have SO MANY ideas to make things better.  The ones who don't make me feel like I'm alone in this, not ever.

I can't wait to fill everyone in on my first Advocacy Day experience...so look forward to that sometime after March 7!

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STX 209 - Update 4

On Friday we will make our final trip to Chicago for the double-blind portion of the STX 209 trial.  In the time since I posted my last update, things went from mildly frustrating to pulling out my hair frustrating.  The whole thing culminated last Friday with me taking time to go into school and observe Ayden to see if we could brainstorm some ideas as to how to deal with everything.  (bear with me while I try to organize what led up to this)

Over the maintenance portion of the trial we slowly saw all the good things we had been seeing with Ayden all but disappear.  We had seen gains in focus, socialization, anxiety, speech, less stim behaviors, and small things like starting to use toys correctly.  When we went to our last appointment and looked back to the differences - we saw drastic decreases in every single area that had made gains.  I want to reiterate that these decreases were seen during the maintenance phase.

I briefly mentioned the aggression issues we started seeing in the maintenance portion of the trial as well. While the issues were minor things such as hitting himself, throwing himself on the ground, or slamming his head into a wall (which sounds worse than it is); every so often we would see a hitting incident occur towards another individual.  We've dealt with hitting before...but it was different.  Ayden used to hit Issac when he was younger.  I think the worst of hit was around 3.5-4 years old where he would actually stop doing an activity to walk over and hit his brother. He would also swat at me on and off, but these incidents were isolated to times where he was already hyper-aroused and I was attempting to help him.  Those types of things involve bear hugs, deep pressure and just generally actions that require me to be right in his personal space.   The thing about those prior instances is they were always toward an immediate family member and we had not seen them for quite some time. I want to give background on this, because while on the maintenance portion we not only saw the emergence of hitting as I described above, but also had an incident at school where he actually hit his para-educator.

So now we are on the next portion of the trial, titrating down from the medication (or placebo).  We started this process almost two weeks ago and since then, behaviorally, Ayden has almost been unbearable.  Just a few days in to the new packs we noticed a decrease in aggression.  While it was less in number though, it was worse in degree when it did happen.  As the first pack progressed, we have seen Ayden not just losing the abilities he achieved over the course of the trial, but also a regression of some behaviors back to things we haven't seen in a year or two.  Re-emergence of stim behaviors and anxiety especially are bad.  Those two things lead to a lot less socialization as well.  As one can imagine, these affects are seen the worst at school.  He's having a difficult time focusing ,so work is harder which is making more anxiety.  He's being made to do things that are difficult which also means more anxiety.  Then frustration is piling on top of that - I imagine because he is unable to do things he could do just weeks ago.  All these things just lead to one very sad, anxious, over-extended little boy.

As I mentioned above, I went in Friday to observe Ayden during school.  I was only there for an hour, but it was much worse than I expected.  He basically spent the entire time staring at moving objects hanging from the ceiling (this was during calendar/weather time).  As he moved into group work, he refused to do things every time it was requested of him.  He would walk around, stare at the ceiling...basically anything to not do what he was told.  When he was forced to by hand over hand...he started clearing materials from the desk and attempting to throw them as well.  I left after about an hour.  I had gone to observe what they were seeing and give some ideas as to how we could help, which I easily had in the time I was there.  It was utterly heartbreaking to watch though.

I was home for about an hour when I received a call from school.  After I left he had hit his para-educator.  Our school district has a very strict policy on hitting.  The child is taken to a time-away room and a timer is set.  After the timer buzzes, the child is then given a puzzle (or other similar activity) to complete to show they are ready to return to the classroom.  When I received the call, he had gone through 4 timers already ending in throwing the timer, throwing the puzzle, throwing himself on the ground...you get the idea.  As I was on the phone with his teacher, he finally complied with the puzzle and was returned to the classroom at which point he cleared the gen ed teachers desk and then attempted to hit another child. (which THANKFULLY was blocked by the para-educator).

After all this, I put in a call to the study coordinator.  I wanted to be sure they were aware what was happening.  I didn't expect him to get worse while going off the medication.  We were not told what to expect during the process, which I can only assume is because they want an accurate portrayal from us and not a skewed one by them saying "you may see this".  I was very glad I did make that call though.  All these things that we are seeing are very typical when kids are taken off the (actual) medication.  Especially kids that have been on too high of a dosage.  (You may remember, we are fairly certain that Ayden was on too high a dose).  It was a relief to hear this was typical, and even moreso to learn that we were probably at the worst of it and should expect the craziness to level out the closer we get to being totally off the medication.

We've had two more days of dosing in since Friday - and have watched Ayden very closely over the weekend.  Both Mr Awesome and I feel his focus and anxiety was better than it was the previous week.  I am very hopeful this will carry over into school today and we won't have a repeat of Friday.

Our next appointment is this coming Friday at which point we will be enrolling in the open label extension.  I want to just end this post by saying that the past few weeks have been difficult, but the small amount of time we saw where we believe Ayden was on a good dosage gives me so much hope for what this will do for him long term.  I do not regret being in this trial even for one second despite what we are going through right now.  It is a short amount of time in the grand scheme of things.   I imagine the next post about STX 209 will be much happier as we will officially and knowingly be on the actual medication.

More to come...

Edit:  I forgot to add this little bit...we've also been seeing some sleep issues since starting the titrating down.  Ayden will wake 1-2 times per night, but does return to sleep himself.  He also fell asleep in school - which is utterly unlike him.  I believe the night wakings were also something I noticed while we were building up to the maintenance dosage as well.  Not terribly important, but good for others who may be considering the trial.

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The Moment

I have this moment that I remember very clearly from when Ayden was an infant...  We were helping my younger sister move from her apartment, and I had offered to take my niece (my older sister's daughter) overnight.  Her and Ayden are about five weeks apart.  So I'm sitting there in this apartment filled with boxes while the guys are packing up and playing with my niece and Ayden when I clapped and said "yay!" for something she did and she looked at me and clapped right back.  It wasn't something new for her, but it was the first time I had seen it.  It was in that moment that I remember clearly knowing that all those little things I had worried about the past few months with Ayden were a problem.  The moment I was sure something was wrong despite the fact I kept being told his development was normal by doctors, friends, and family.  I waited another year and a half from that point until Ayden clapped the first time.  So, I'm a little...sensitive....to the whole clapping issue.

I started trying to get Issac to clap when he was just three months old.  He finally did it around six or seven months and I breathed a huge sigh of relief.   I still remember the exact moment he did it.  I started crying and he just looked at me, then he started to cry too - which of course made me laugh.  I'm sure he'll love this story when he's older.

Then there is Miss Emma... as with Issac, I started working on clapping with Emma very early knowing with Fragile X we were looking at the possibility of some large hurdles in the fine motor skills area.  When she was around six months old, I received a video of one of my good friend's daughter (who is just a week or so older than Emma) clapping away.  I think my heart broke into about a million pieces when I watched it.  It was that surreal feeling of being so incredibly happy for your friend and so devastated for yourself at the same time.  I just struggle with this diagnosis so much still, and the fact that Emma is developing normally thus far is amazing but I am still waiting for delays with each milestone.  I'm so afraid to be excited and enjoy this time because if we do start seeing delays it will be like she is being diagnosed all over again.  There are parts of this life with Fragile X that are not easy and can easily consume - and this is one of them for me.

But despite my ramblings of my crazy issues with clapping, this story is not one with a sad ending.  On Christmas Eve Emma decided that she would clap for us.  She was just sitting there and got excited and clapped like she had been doing it forever.  Two tiny hands, helping to heal a wound on my heart from long ago and one Christmas made just a little bit brighter.

Edited:  Added a short video, it's about all I can get her to do when I'm recording!

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STX 209 - Update 3

I know this post is crazy overdue...but other things keep requiring my attention this holiday season.  Now that it's almost over and I have a few minutes to breath..(who am I kidding there?  I never have time to breathe!)

My last update was in mid-November, almost six weeks ago.  We have been on the "maintenance" portion of the trial for a while now.  This means we have been on a steady dose of whatever level of drug (or placebo) we were assigned to in the randomization.

Behaviorally..Ayden is doing okay.  It really depends on the day.  I can say without reservation that there have been changes.  His good is much better.  He is more functional and anxiety is very much decreased from what it was when we started.  The flip side of this is his meltdowns - when they do occur - are terrible. We've seen many more instances of throwing himself on the ground, slamming his head into the wall, throwing materials at school, and hitting himself in the head.  We've randomly seen all of these issues come and go with Ayden, but it is every time his anxiety gets bad or he is frustrated that we see them now.  None of it has harmed himself or others but it's very difficult to watch.   I was looking forward to starting to wean him off the drug for this reason, but our appointment was rescheduled due to weather so we have another week still before we start the weaning process.   I personally believe he is on too high of a dose (though we have discussed the possibility he is on too low of a dose as well) so getting into the extension will be interesting.

As far as speech goes, we are progressing.  Since my last update on the trial we have added more words and also sound isolation/imitation.  This is perhaps the most exciting to me of everything we have seen.  Ayden has been in speech therapy forever, but without even attempting to imitate or isolate sounds speech therapy doesn't do much good.  I very much understand it just could be time for this to start happening for him and the fact we are in the trial could be coincidence - but I just don't think it is.   Time will tell, though!

My next update will be during or after the weaning process.  If he has been on the medication this entire time as I think he is, we should notice some significant changes back to old behaviors.  Here's hoping I keep my sanity the next month or two as we transition him off and then back on again for the extension.

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STX209 - Update 2

We are now two full weeks into the trial and have completed Visit 1, 2, and 3 out of 7 total.  Our second visit (technically Visit 3 of the study because Visit 1 and Visit 2 were combined for us) took place last Friday.

We were informed at that visit that if we are on a higher does, we haven't yet reached it.  She didn't explain exactly, but said something to the effect of we would be at the steady dosing (not being tiered up) at the 4th visit.  That is of course assuming we are not on the placebo and we are on a high dose.  The only reason this information helps is for watching for a dose that is too high for Ayden.  Some kids when they get on too high of a dose actually have the opposite behavioral issues occur instead of the once we are looking for.

Changes we have noticed, well, they are minor and could all be attributed to a really good day for Ayden (see story below) or just normal development.  Here is what we're noticing...stressing that these could all be due to developing and work at school.
-- Less spinning
-- More purposeful play with toys
-- Requesting to do non-preferred activities (like coloring)
-- Sitting still for more than 5 minutes when not doing preferred activities
-- Less overall anxiety

So, that is a short update on changes...but I do want to share a little story about this weekend.  I know for someone stumbling upon this blog that hasn't met Ayden and doesn't know us this won't mean a lot...but for those that do, and that deal with a fraggle with anxiety issues - this is kind of a big deal.

On Friday, we took a full day trip to and from Chicago for Ayden's visit.  That's 8 hours total in the car.  He had really high anxiety that day (not unexpected), but it was somewhat worse than normal.  The blood draw wasn't pleasant, but it went MUCH better than our previous visit.  It was just a lot of whining and fussing all day.  Recovery from a day like that usually takes a day or two for him, so I expected us to be back at 'normal' anxiety levels by Sunday.  Of course, we have always tried to push a little bit though, so we made plans to attempt a birthday party that weekend.  At an inflatable bouncy house.  That was loud.  And chaotic.   Oh, and with people Ayden had never met before.  I'm typing this and wondering what in the world we were thinking because those things are ALL triggers for his anxiety and it was the morning after our Chicago trip.

You know what though...Ayden did amazing.  Super amazing.  We walked into a large, gym-like room that was loud with kids running everywhere and screaming and he didn't even hesitate, not for one second.  He was pushing Emma's stroller and I can honestly say I don't even think he looked back at me for a visual "You're fine" like he usually does.    Once we got his shoes off, he started to just run off to play.  I had to make him wait so we could see where he was going.  He had SO much fun.   We had minor problems when the birthday boy was opening gifts, but they were just that - minor.  Mostly he was just asking to eat the pizza and cake sitting on the table and we were telling him to wait.  But it was  two of his favorite foods and he was just STARING at them - can't blame a kid for that, really!  He barely even reacted to everyone singing "Happy Birthday".   It was just a really great experience.  Whether we are actually on STX209 or we're on the placebo and seeing some new developmental changes - I honestly do not care.  I just hope we see MORE of these amazing days to come!

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Mother's Day Surprise

With the warm weather, comes family trips to the park.  As part of Mother's Day this year, we decided to have a picnic at the park with the family.  Normally our visits to the park are fairly short due to the fact that Ayden is just not a fan.  The park includes just a lot of things he is not fond of - differing terrains, climbing, sliding, swinging - you know, park things.  Over the past two years though, we have really been slowly working with him to try these things in the hopes that one day he would push past his sensory issues he has with them and enjoy himself.  It's a lot of patience and hard work that usually ends in whining and crying, which makes the park a mild headache for mom and dad.  

Last week, though, we heard some good news from school.  One of Ayden's paras had been working with him to get him to go down the slide at school by himself.  And she had succeeded!  Shortly after Ayden started going down the slide at home by himself.   Then we went to the park....and I'll just let this video speak for itself:

Climbing.  Sliding.  Walking on woodchips.  SMILING.

This in itself would have made my entire day.  But there was more.  This park had safety swings with backs and harnesses for the kids as well as normal swings.  I put Ayden in one of the safety swings with a lot of hassle.  We always have him try it.  He hates it, but he knows one try and then if he doesn't like it he's done.      Much to his surprise....

He LOVED it.

He love it so much he was repeatedly asking to return to the swings.  He would go slide for a while, then come and ask for the swings.  Again and again and again.  So after we ate we went back to the swings.  Mr Awesome thought we would push it a little farther and try him on the regular swings.

That smile is TWO YEARS of working with Ayden.  Two years of pushing, crying, whining.  I've waiting a long time for that smile.  And to top it off, when we said it was time to go home he told us no, but came without fussing and on the way to the van looked at me and asked for more.  I don't know if it was more park, more sliding, or more swinging that he wanted - but it didn't matter.  My little boy who usually leaves the park on sensory overload left happy and wanting more.  Easily one of the best Mother's Day presents I've ever received.

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One Year

It's been a year since we had our official diagnosis of Fragile X for Ayden and what a year it has been!  I was just reading through my first post about how Ayden has been developing, and even though I knew he had made large strides it's amazing to see how I felt a year ago compared to how I feel now.  I am not going to dwell much on sadness or feelings from that day a year ago - because we continue to look forward.  Each day is a new day, each task is a struggle in a different way.  Looking back does no good but to stir up feelings of guilt and anxiety for me.  That just isn't how I want to spend these years, they go so quickly.  So...let me go over how Ayden is doing!

Screaming - A year ago, we had minor screaming fits.  Now, I see even less.  We have a decent amount of temper tantrums, but we've found those to mostly be the normal 4.5 year old "I'm not getting what I want" tantrums, minus words of course.  A huge break though for us occurred when we began implementing YES and NO cards for Ayden (via PECS).  He understands these well, so giving a NO card to him and having him throw a tantrum is much easier for us to know how to handle.  It's the differentiation between knowing he's not frustrated we don't understand him and that he is angry because we said no.  Before those cards, it was a guessing game and as we continues to work on dealing with the behavior of the tantrums they continue to get much better.

Communication - As I mentioned in my first post, communication goes hand in hand with screaming/whining/tantrum issues we have with Ayden.  We introduced Ayden to PECS at home over this past year and he is successfully communicating wants/needs via sentences right now - and not just to mom and dad! Just this past weekend, he used his book to request something from his Aunt.  It was such a proud mommy moment!!  We still don't use PECS exclusively for Ayden's communication, but instead use it in combination with some signs and pointing when we don't have a card available for what he wants.  Ayden's understanding of communicating though is so much better.  He will figure out a way to tell us what he wants most of the time, even by stringing two cards together that really shouldn't go together, but in a way that we understand them.  He really has made some fantastic strides that keep both him and us infinitely happier.  As of today, he can also say some words "on command" which is also a very big deal for us.  We've seen words come and go, but never was he able to say them when requested or in response to questions.  We're hoping this time it sticks around.

Food - we still struggle with Ayden on mouth stuffing a lot.  I've tried a decent amount of the "tricks" for FX kids with this issue to no avail.  Same thing with silverware - with the exception being he CAN use silverware now (though not perfect) but refuses to most of the time.  We're hoping that with the use of silverware the mouth stuffing becomes much less prevalent.  He is also beginning to explore even more foods, and eating like a growing boy.  He certainly can pack food away!!

Sensory - We have slowly worked on sensory issues over the past year, and it is helping!  He still has pauses at  walking on different surfaces, but he actually will do it.  We also have successfully use a few exercises to calm him down with the exercise ball as well as the use of a bean bag chair.  It's not perfect, but it certainly is manageable.  Most of the time, he will at least attempt to do what we ask him now without much prodding (or bribery!).  In turn, he's found a decent amount of things he likes doing.

Anxiety - While we've never had terrible anxiety issues with Ayden, the situations where his anxiety runs high have become SO much better!!  He now will usually walk into large crowds, attempt things that are outside of his comfort zone etc without breaking down.  I can't even remember the last time he totally lost it because of his anxiety at new people/situations.  He also will deal with situations differently.  Instead of screaming, he'll quite often just shake his head NO and turn and walk away.  It's pretty amazing to be around him in those situations because I remember how hard certain things were for him and how he dealt with it.

Social - Here's a new category for this year's "round-up".  I don't even know where to begin explaining where Ayden was socially last year other then to say, socially he basically did no interaction with others.  Mom and Dad have always been a different story..but he was perfectly content to sit in a corner and spin a toy rather than play with other kids.  This is easily the area Ayden has made the most strides in this year.  He now plays with other people (kids and adults) and attempts to interact as well.  He will enter a room and give hugs to familiar people, try to get them to play with him, and has even begun initiating peek-a-boo just recently.  Much to mom and dad's excitement, he also has started participating / initiating some pretend play.  He makes stuffed animals wave/talk which really is just AMAZING.

So..that's my year in review for Ayden.  We have some large decisions coming up in the next few months that I think will really determine the course for him as far as schooling goes for a little while at least.  Essentially, the decision of sending him to kindergarten or holding him in the ECSE classroom - but the decision is much more complicated then that.   I'm very much looking forward to another year of progress and just watching him grow with his little brother and new baby sister.  FX is definitely a part of our family, but it is in no way carving our path for us.  We continue to carve our own path, and do what we can to make life the best we can for Ayden as well as his little brother and sister.

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Christmas Time

I love Christmas.  I love spending time with family, the food, looking back at the past year...but when you are doing extra traveling, messing with schedules, tons of people, and activities that aren't normal it just can wear on your little ones.  Especially those little ones with sensory issues that need the consistency of a schedule to help them function their best.

We've been very lucky with Christmas time.  Each year we spend two nights with each set of Grandparents split by spending Christmas Eve with my family and Christmas Day with my in-laws.  It's a lot of traveling, but so very worth it.  (Even those years where we are driving in a snow storm Christmas Eve night!). 

With Ayden, all of this becomes very trying at times.  Opening presents causes anxiety, the waiting while others open presents is difficult as well for him, thanking those that gave gifts is also a small struggle - but through it all he manages.  We do what we can for him, without letting him skip out on anything.  It's always been important to us that he learns to take part in family gatherings.  We do other things to help with the stress it causes such as allowing him to do his favorite things longer or eat all day if that is what he wants.  I know many other FX parents that will alter and change the way their family celebrates by doing things like opening all the presents for the kids and leaving them in a pile to attack on Christmas morning.  I don't have any issues with this as it works for some, it just isn't what we wanted.  It much more important to us that Ayden is a part of our family events where he feels accepted and welcome so when he does things like this outside of family, he will be much more comfortable.

This year really was one of the best years we've had with Ayden.  He was fussy and whiny pretty much all day on the 24th and 25th, but still did everything that was expected of him without having any temper tantrums or breakdowns.  That, and the fact he actually enjoyed opening gifts and playing with them really was amazing.   We had some bad times during the time we were gone with listening and napping (normal 4.5 year old stuff) but overall I think he really enjoyed everything.

Today, of course, both kids are exhausted.  (So are mom and dad!)  But as I take time to reflect on the strides Ayden has made since last Christmas - I remember that all that we push him to do is so very worth it.

I think my biggest joy of the past few days is that Ayden (and Issac) are finally starting to show us that they understand we expect them to be more well behaved away from home than at home. It was just a few small instances, but it was enough to warm my heart.

For those other FX families that had a more trying holiday season....know that it does get better.  And most importantly, know that the holidays aren't always something to dread.

I'd like to end here with a few pictures.  We don't get tons of good ones since the boys hate sitting still, but these are some of my favorites.

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What to do when nothing seems to be working...

It's been a while since I've posted.  I mostly try to keep this blog very upbeat and positive, a place where I can share information and help others out.  Being positive is a very large part of that for me, so when I'm having a rough time, I tend to not post.  But, part of this life for us is dealing with those down/hard times as well as the good times.  So today, I'm going to share some of the more difficult parts of our life lately.

I mentioned on here a few months back about how we were having problems with Ayden hitting his brother.  He's always pushed him a bit, but it really got out of hand when school started in the fall.  Since then, it's gotten even worse.  There isn't an hour of my day that goes by where Ayden is not hitting, pushing, slapping, or doing some other type of physical damage to his little brother.  It has become a constant source of problems in our house and despite everything we have tried, it is not getting even a little better. 

The past few weeks, we've had the joy of another issue popping up as well - Ayden is just whining all. the. time.  This past week it really hit an all-time high frustration level as we quite literally listened to him whine from around 4pm to 7pm (bedtime).  Ayden's whining in the past has always been related to communication issues, and while I can't rule that out this time - I don't feel that is the case entirely.  He's doing a very good job using his PECS to communicate his wants/needs in sentences to us.  The problem that we are having now is that instead of giving him whatever he asks for as you do in the learning stage of PECS, we have begun to tell him no and this isn't going over very well.  At all.  We introduced the yes/no cards a few months ago, and he definitely understands them.  He will build his sentence and then hand us the yes card, so it is very clear he does in fact understand.  He just doesn't like it.  I believe this is fairly typical behavior for a 4.5 year old, but as he can not actually VOICE his frustration/anger at our decision he is using the only method he knows how and that happens to be whining and crying.  Understanding this though does not make it easier on us.  So...we get a frustrated and angry 4 year old, who then begins to not only whine and cry, but also to take out his anger by doing things like throwing toys, hitting his brother, yanking on the curtains etc. 

Of course, we have to add on the final complication to this entire mess, the fact that both boys have not been listening to us lately.  I certainly expect this a little, they are of course children.  My frustration lies in the fact that no matter how consistent we are or what we are doing, every day the same words are coming out of my mouth constantly:

"Don't hit."
"Don't push"
"Don't scream"
"Don't run in the house"
"Don't go in the kitchen"
"Don't get out of bed"

Some of these are directed at Ayden, and some at Issac.  Issac is doing very well with his speech, and has a very consistent answer to return to me as well. "NO".   I very much expect this from a 2 year old, and it has been happening a month or so - though it is always dealt with.   Usually I just need to look at him and he corrects himself to "Yes, mom".  So, it really shouldn't have come as a surprise when Ayden started telling me no as well.  It was actually kind of the icing on the cake.

I feel like I could handle a few of these issues at a time, but all of them together is just too much.  I'm tired, frustrated, and feeling utterly and completely lost.  None of our normal disciplinary issues are working right now.  (I'm sure being 7 months pregnant certainly is not helping things at all either.)   So I sit here, wondering what more we could possibly do.  What part of Ayden's behavior issues are typical 4 year old issues and what part are FXS issues.  Most of all, I wonder what I can do so he is his normal happy again.  It's difficult to explain that to people, because Ayden is one of the happiest kids I've ever met.  When you talk about a smile lighting up a room, you need only to look to him to understand that.  When he is happy, the world around him his happy.  His smile, his laugh, his loveable nature....you will never meet a happier child.  This is quite literally the first thing most people say to us, even that have known him for a while.  So when I say he isn't normal happy, I mean he isn't like I explained above.  He's happy, and it's noticeable - it's just not normal for him.

I don't have the answers right now for all this, but I do know it needs fixing.  The hitting just cannot continue especially as we will have a newborn in the house very soon.  I do know that it's something only Mr Awesome and I can work through though.  And we will, it's just taking time.  Through all of it we must be doing something right as these behaviors do not happen much outside the house.  It gives me hope that it will begin resolving itself as we continue to push forward.

We'll be doing our annual Christmas Tree cutting and decorating this weekend.  I'm hoping it will help them a bit to get out and do something different that Ayden certainly has enjoyed in the past and Issac should start to remember.   And hopefully, I will update soon with some of these issue getting better or resolved.

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The Big Reveal and A Big Win

This weekend was a busy one for us.  Being this is our last baby, we decided instead of calling everyone to tell them about baby's gender that we would have a party to celebrate and share with our entire family at the same time.  It's a new "trend" in pregnancy right now, to have these parties called Gender Reveal parties. 

Normally, a gender reveal party works like this:  Mom and Dad get the ultrasound done, and the technician writes the gender on a slip of paper then gives the parents-to-be an envelope containing the gender.  Said envelope is delivered to a baker who then makes a delicious beautiful cake with the inside tinted either pink or blue.  (You know, blue for boy, pink for girl).  Family and/or friends are invited and mommy and daddy cut the cake to reveal the gender to themselves and everyone else at the same time.  While I have no issues with this, it wasn't the right way for us to go.  I knew myself, and while I would be happy for a little boy I knew finding out in front of everyone would not be a good idea for me.

So...we revamped the method a little!  I got some boy and girl balloon:

Then stuffed the balloons with little papers. The papers were carefully folded, so no peeking would occur through the balloons....and revealed the gender and name of baby on the inside.  The idea is, that everyone picked their "team" color balloon (team pink or team blue) then they would all pop them together and find out.  Let me just say, this turned out fantastic and so. much. fun.  My shortsightedness in remembering to find objects to pop the balloons with also worked in our favor because everyone could be creative about how they popped their balloon - of course they all wanted to be first!

So....we gave the okay to pop the balloons....

The whole thing really was a huge success.  We had such a great time just eating and spending time with family, plus being able to share this with everyone together was something I would recommend to every mommy-to-be.  It was even better for me then sharing we were welcoming the first baby grandson to both sides of the family. 

While the entire day was utterly fantastic, I would have to say one of the best parts for me happened when I laid down to go to bed that evening.  Because while I was entertaining and making sure everyone was eating - Ayden was playing with his aunts, uncles, and grandparents.  So much so, that it wasn't until I thought back on the day that I realized not once did I hear him scream, cry, or whine.  Not one time did I have to attend to him breaking down and get him out of the hustle and bustle of having 15 extra people in our house.  He didn't even freak out when everyone popped their balloons - something which normally would send him into hysterics.  Look at the pictures above during the balloon popping and you can see him just hanging out in the middle of the crowd.  I'm just so proud of him for how well he did he entire day.  And I look forward to more days like this, because for once I didn't worry about how to help him enjoy the day - he did it without any help.   It's these type of days and moments that make all that work worthwhile.  It reminds me that there is hope when we have bad days and helps me to keep going.  It is worth it.  There is hope.

And as for Ayden...he's going to be a big brother again........

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Only this time, it will be to a little sister! (You didn't think I'd forget to share this part did you?!)

If you are interested in seeing the rest of the pictures from our big party...you can view them here: BBQ and Gender Reveal Album

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iPad Update, 1 Month Later

I have been meaning to do an update on our iPad for a while now.  As I was going to title this post, I did a quick check to see how long it's been and surprisingly it was exactly one month ago today that I posted our first update!

So, here we are one month in. Ayden's time is closely monitored on the iPad because he literally could playALL DAY without stopping.  We usually do about an hour a day split into two sessions (morning and afternoon).  He is required to play with other toys in order to get his time, so in a way it's used as a reward.   It's especially interesting to me that it calms him as much as it does.  Normally speaking, video games shouldn't do that.  Our FXS doctor actually recommended not allowing any tv or video games an hour before bed or nap when discussing sleep issues.  It is quite the opposite with Ayden and we find he will fall asleep much better or be more calm after playing (if he tolerates his time being up).  With his anxiety issues, any kind of activity that he can do himself to calm down is fantastic.  We were given a bean bag chair by Ayden's uncle, and I also try to keep one of his iPad sessions in that chair as well.  Double sensory calming?  Yes, please!

I've said before Ayden says about 5 words, but none of them consistent and certainly not spontaneous.  He has quite officially begun saying his first consistent word and using it properly without prompting.  It's usually the first word out of his mouth in the morning even.... "iPad!"  I'm sure he'll love hearing this story when he is older too!

Onto the apps....  I'm going to start reviewing some of these Ayden plays a lot soon, first I want to figure out how to screenshot them a bit. I should know how..but haven't sat down and figured it out yet.  We'll get there though!

We have a decent amount of apps for Ayden to play with right now.  First among those is Angry Birds.  It's the first app he went to, the first app he asked for...and definitely the first app he plays when he sits down.   We let him saturate on Angry Birds right away at first and didn't force him to do anything else.  I've learned from experience that letting him get to the point of realizing he's "done" with something is much easier than forcing him.  Our entire day will be ruined if I force him, and that just isn't good for anyone.  It took a few weeks, but he slowly started moving into other apps.  I was really focusing on letters, numbers, colors, and shapes when looking for apps to add - and let's just say there are a TON.   I was fairly certain Ayden knew these things - but output is so difficult for him without proper motivation.  I am ecstatic to be able to say now that he definitely knows all his letters (upper and lowercase), at least the numbers 1-5 (I'm actually thinking it is higher, but he doesn't play with number games much), all his basic colors, all his basic shapes, can match similar objects, play memory games, as well as identify most farm and zoo animals.  Oh, and he can put together 20 piece puzzles.  He's also starting to understand different emotions.  This seems like an odd thing to know, but one of the apps he has shows you a face and says if it's happy, sad, mad etc...  There is a lot more I've noticed, but these are the big ones for us.  Basic skills that most 4 year olds have, but I wasn't sure we were there with Ayden.  Being with him all the time, I suspected he knew all this, but to SEE it.  To know without a doubt he understands, he comprehends...it's amazing and wonderful and just leaves me speechless. 

When I was explaining about the contest that started all of this for us...I said this:

"To be certain, it [an iPad] is not something Ayden needs or we would have figured out a way to swing it.  However, I cannot deny how much this tool could help him."
Today, I am officially eating my words.  I could never have dreamed that this device could bring so much joy to Ayden as it has.  I couldn't have imagined how much it would positively affect our lives.  I certainly wouldn't have thought after just a mere month that he would be giving us the output he is and continuing to build on that knowledge and learn in a way that we can watch and see progress and track.  Most children have their voice and communicate their knowledge in that fashion.  For Ayden, that iPad is his voice right now and what a beautiful voice it is. I love the fact I can get a glimpse into the head of my 4 year old in a way he enjoys.  I couldn't have ever asked for a better gift for him or for us.

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4 Year Well-Baby Visit

We finally had Ayden's 4-Year well-baby (child?) visit this last week.  To say it was traumatic (for me) would probably be quite an understatement.  We had to reschedule this visit, which is why it is so late, and ended up having our appointment with the "new" doctor in our practice instead of our normal pediatrician.  We used to have a nurse practitioner at our office as well as our normal pediatrician, but she left back in January and since then it has been difficult to get into the doctor.  It's nice to have the option of seeing someone else if need be, but we will not be seeing this particular doctor EVER AGAIN.

Obviously, Ayden has a decent amount of developmental delays.  Our visit to the FX Clinic back in May included many evaluations and our doctor's office has all those on file.  I know exactly where he is behind, what month he is testing in for all areas of development and essentially more about Fragile X then most people around.  I live it, it's expected.  I certainly don't expect our normal pediatrician to know as much as I do about it, but expect that she will take suggestions I have into consideration and research them if need be.

So, the first thing this new doctor has me do is fill out a basic "What is your child doing?" evaluation.  I've filled out a ton of these, and breeze through it.  I know he's behind, I don't need a test to show me.  I'm a bit annoyed I have to fill it out given the records we have on file, but whatever.

Ayden is doing pretty well at this point as our appointment was during his normal nap time.  He has sat through me filling out this evaluation, made it back to the actual room with the nurse, and had his weight/height taken without too many issues.  Overall, very good for him.  His anxiety level at this point was very low.  I went over the things I wanted to cover with the doctor including finally getting our referral to the speech and occupational therapy programs at Sparrow Pediatric Rehab.  They happen to be the ONLY speech therapy in our area that takes insurance and have a 6 month waiting list which requires a doctor referral.  I also wanted to discuss the possibility of Minocycline and ask our doctor to do some research for me, of course providing her with some articles explaining how it can benefit FX children.  We haven't decided we for sure want to try it, but I wanted our doctor's opinion after she looked into it.

Nurse leaves, new doctor comes in.  He immediately approached Ayden without saying anything to me and touched his face asking what the two marks on it were.  (They were mosquito bites).  My ultra low anxiety Ayden now hits the roof and begins flailing and screaming.  Issac, who hates his brother like that of course tries to help by handing him anything he thinks Ayden would like making it much worse.  Meanwhile, new doctor is talking over the top of screaming - STILL has not introduced himself.  Uh....really?  My annoyance level is now also pretty high. 

I do get Ayden calmed down, fairly quickly for having had a stranger touch him without warning.  Heck, I can barely touch his face with out telling him first and even then he barely tolerates it.  The doctor now says to me...and I want to quote this.... "So, he's autistic or something?".  Jaw. drop.  I expect that from strangers.  I expect that ignorant people.  I DO NOT expect or tolerate that from a pediatrician who HAS MY CHILD'S CHART IN FRONT OF HIM.  I very calmly explain that no, he has Fragile X Syndrome with a dual diagnosis of PDD-NOS and all his paperwork should be in his file.  His reply "So, he's autistic.  Ok." then immediately launches into a lecture about how I need to get SSI for Ayden and other supplemental insurance because I'm doing him a disservice by not having those things available to him.  In the midst of this, he explains how Ayden's Early On teachers are also terrible and not doing anything they should - also tells me we need a caseworker.  Did I mention he still hasn't introduced himself or even asked my name?  I am BEYOND frustrated at this point.  For anyone to tell me I am doing my child a disservice by not taking government money that we DO NOT NEED is beyond arrogant.  To then tell me his wonderful teachers are terrible is just another thing entirely. 

So, frustrated, annoyed, and totally flustered now.  Doctor beings going over the developmental evaluation I filled out.  Tells me Ayden is severely delayed.  (No kidding?  Did you even read the Fragile X stuff in his file, it's pretty detailed).  He tells me Ayden's percentiles which the nurse already went over and then starts checking Ayden out.  Of course this part is terrible, but I instruct him how to do it the best way and thankfully he does listen.  It's never pleasant, but necessary.  I decide while this is happening to totally skip the minocycline talk - I'll have it with our actual doctor later, it's not imperative anyhow.  I do; however, need the referral, which seems like it shouldn't be a problem.  Doctor gets ready to leave and I remind him of the referrals for speech and OT.  In yet another "really, you are a doctor" moment - he says "Why would you need that?"  I am SO DONE by this point, so I'm sure I was rude.  I explained SPR needed the referral sent directly from the office and wouldn't accept it any other way.  He was insistent that the FX Clinic we went to should have done this for us to which I very firmly told him he needed to write it out for us.  He still only wrote up a prescription, handed it to me and left as he's telling me the nurse will be in for vaccinations in a few minutes.  You know, the first time he mentions it at all.  I had no clue, so didn't have time to even ask which ones he was getting.  In retrospec, I should have checked...but I was so flustered already.

Vaccinations are always terrible for us, and Ayden needed a total of 4.  It took 3 of us to hold him and 1 nurse to administer the shots.  It's the first time I've ever cried during shots...it was just terrible.  I know it's needed, but it was difficult this time.  Even with all of us holding him he still moved and got a nice scratch from one of the needles.  Just a very sad end to a terrible doctor visit.  Now...back to the vaccine part - I  rarely refuse vaccination, but I had turned down one that I decided not to have him get.  I can't remember which one it is, but there is one that now covers a new strain from when Ayden has his, so he essentially would be getting an "extra" dose.  I wasn't okay with that, so I turned it down after checking into it at Ayden's last visit.  We put it on the chart, so I guess it didn't cross my mind to double check.  The risk is small, it's not required, and it was an extra dose I just didn't feel comfortable about.  Somewhere in the midst of the chaos that was his appointment, this doctor decided to give Ayden this vaccine anyhow.  Without telling me. Not a happy mommy.  I don't know how it slipped by the nurses, but the damage is done now.  I feel like he probably told them I ok'd it, because our nurses are amazing and have never made a mistake and ALWAYS respected my wishes.

I did have a chat with the nurse after the vaccinations were done.  We were lucky enough to get my favorite nurse, and I politely asked if this doctor would be a permanent addition to staff.  Luckily, he is temporary and only works a few days per week.  We now have it listed on our chart that we don't ever see him.  I of course checked to be sure our normal pediatrician was not retiring with new baby on the way, if so we definitely would look into another office.  Thankfully it's not in the works...and more doctors in our office are.

Now, I'm sure reading this very negative post you realize it's a fairly uncommon thing for me.  I do, in fact, try to keep this blog very upbeat.  This visit was just so off the wall, and not normal.  My reason for sharing is simply to let others know these type of visits DO happen.  And they are most definitely not normal or okay.  No one should ever leave a well baby visit  feeling like this, so if you are then please do yourself and your child a favor and find a new doctor.  I think so many times with insurance we can forget that we are customers and should be treated with respect.  Of course doctors often have to say thing we don't want to hear, but the manner in which they do it and the way that treat us and our children is very important.  I know, personally, we are very thankful we have an amazing pediatrician.  Given the fact the whole office is so wonderful, I doubt it will be long before this doctor ceases to be a part of the office.

Until next time...

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Annual Visit to Nana & Grandad's House

As I mentioned last week, we had a very good time visiting my parent's house with the boys a few weeks back.  I know changing locations and not having Daddy around is always difficult on Ayden, but he really did very well.  We had a couple of very exciting things that really may be a highlight for me when thinking about Ayden and his progress this summer.

First,we attended our hometown summer fest.  To say this is sensory overload for Ayden may be a small understatement.  Loud music, lots of people, high noise levels....it's one of those types of things we usually avoid with Ayden because often times it ends in a lot of screaming and meltdowns!  We decided to try it this year though.  I know, I know...you other FX moms are cringing right now knowing what this usually leads to.  We had a decent location since my parents are directly across the street from downtown, so it was easy to just leave if it got to be too much.   We did our "trial run" before the BIG show on Saturday with the waterball tournament.  Waterball is kind of like tug of war, but you have a ball on a string that you shoot with a fire hose to get to the other team's "goal".  It's a lot of spraying water...and since both the kids love that I figured it'd be a good mix even wth the crowds and noise.   I was not disappointed!  Ayden did FANTASTIC walking over just holding my hand and enjoying the water/spray in-spite of the large crowd and dogs around us.  The best part of the whole thing was he came up to me and told me he was all done!  He signed all done, then asked to be picked up.  We pushed him a bit after that so little brother could look at race cars and the train on the way home, which did cause some screaming, but overall it was a big WOW for us and such a huge improvement for Ayden.  Saturday went much the same while we walked the car show, except Ayden sat on daddy's shoulders and just relaxed and had a good time.  I was so happy and proud of him!!

Second, I should explain with this next one that Ayden has some severe texture issues.  By severe texture issues, I mean he has a difficult time even walking down a sidewalk that changes from cement to brick.  Walking on grass has not even been an option until just recently, and even then it's with a specific purpose like "I'm getting my toy".  He also has issues with things he touches, such as tennis balls, play-doh, etc.  Anything different really.  We have to work a long time to get him touching other objects that don't fall into his normal everyday textures.   The other thing he's had a problem with is dogs.  He had a dog scare him when he was about 18 months old and since then it's like been a lot of meltdowns for him to even see a dog.  This has slowly been improving thanks to a couple dogs, namely my parents and our friend's dog who are both very well trained and great with the kids.  So, how is this all relevant?  Ayden, multiple times over the time we were at my parent's house went outside, on the grass, and was throwing a tennis ball around to their dog which he then chased around.  And he was smiling.  And having FUN.  Without being prompted.  It seems like such a simple thing, but it is HUGE with Ayden.  Just one of those things would be a big step for him, but all together....it was amazing to watch.  He even picked up the tennis ball when it was slobbery.

He just did so well the entire time we were there.  I love that we are finding that balance for him and being able to go out and for him to enjoy himself.  Watching him be anxious and scared of things most kids enjoy has always been so difficult on us, but now we're enjoying each second that he improves.

I do have some fantastic pictures to share, and will post them later on.  I haven't even had a chance to pull them off my camera we've just been so busy.

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Behavior Modification

I try not to do a lot of posts when I am frustrated, since I strive to keep this about not about how I'm feeling day to day but about Ayden and Fragile X; however, I can't deny that those two things bring many frustrations for me (especially together).  I'd been thinking about my next post here knowing I needed to update how Ayden was doing, and it just wasn't what I wanted.

I look back at the past month and see us with the same disciplinary issues we had a month ago, even two months ago.  We're doing all the right things - being consistent, disciplining when necessary, being firm - but nothing has changed.  In fact, I'd say it's gotten worse in some areas.  I feel like I haven't been doing enough, like I need to focus more time on him and his needs.  His behavior is telling me something, but I just don't know what and I feel...stuck. lost.  hopeless.  tired.  overwhelmed.

I go through this with him every little while.  This whole journey is definitely not peaches and cream, it has it ups and severe downs.  I hit these downs and wonder where we go from here.  Then I remember to take a step back and analyze because something isn't working how we want it.  I remember that I can do this, that I am the best choice to do this.  Most of all, I remember that he needs me and if I don't help him over these mountains then who will. 

So...time to analyze.  We have a couple behaviors that need to change. 

1)  Ayden is still pushing baby brother all. the. time.  He has been doing this since Issac started walking, but it isn't everyday.  I feel like it was better for a short time, then maybe got worse again this summer.  Sometimes because Issac is in his way, but almost always there is no (apparent) rhyme or reason.  The discipline has always been corner, then telling brother he is sorry (this is done with a hug and kiss).  We attempted to switch these two corrective things around but found the corner to be less effective then.  It's important to note Ayden does not push anyone else.  Not mom, not dad, not kids at school.  This behavior is specifically directed at brother and only occurs with brother.  I think the correction to this problem lies not in modifying his behavior (I mean, that is quite obviously not working), but attempting to modify what is causing the behavior.  Problem is, I have no clue.  So, my first task is going to be identifying what is causing this behavior. 

I am feeling a little better already.  Sometimes it just helps to talk it through!

2)  Our second behavior is a bit more difficult because sometimes it is related to his inability to communicate, but the behavior we want to change is when it is related to him just being, well, four.  Ayden will stand there and whine for hours sometimes.  Whine, cry, scream, flail...they all usually come together.  I know when he gets frustrated and can't tell us what he wants these things occur.  I see those instances occurring less often though as we progress farther into PECS with him and am beginning to know the difference between a tantrum from not getting his own way and a tantrum from being frustrated.  It's much easier when kids can say "no" because at least you know exactly what they are saying no to and can act appropriately!  I think our first step to this is consistently directing him to his PECS book when he whines, and making/teaching him new cards to help with emotions.  I think after he can start identifying what he is feeling, it will be easier for me to say "I know you are upset that you can't do X, but you can't act like this when you are upset - do this instead."  At that point, I will then know it is a tantrum and can discipline appropriately if needed.  This whole process will teach him a) emotions and how to communicate them b) how to redirect his anger in an appropriate manner and c) the inappropriate manner of directing his anger towards others by whining and crying is not acceptable and will be punished.

Having a plan in place can be so helpful!

Our last stretch of summer it seems is going to be a lot of behavior modification, and of course more PECS.  Both good things, and hopefully putting Ayden in a really good place for school starting next month.  Really, he's already on Phase IV of PECS - when the goal was to have him completed with Phase IV by the end of the school year.  I'm infinitely glad we have an IEP change coming up in October because hopefully he will have completed that goal by then! 

I know this isn't an easy ride for us, or anyone dealing with FXS for that matter.  We certainly have our bad days (and sometimes weeks) around here but the joy we receive is just so much more.  I often stress over bad days, falling into bed at night mentally and physically exhausted just hoping tomorrow will be better.  I'm so thankful on those days to have the support that I do because sometimes tomorrow isn't better.  I've learned to bask in the good days though and take the bad ones as they come.  They are inevitable, so it doesn't help to curl into the fetal position and try to escape (even as nice as it sounds!).  Ayden has Fragile X, but I will not let it rule or ruin our lives.  I will do what I can, we will fight and we will win..  Ayden will win....and that is what matters.

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The Things No One Tells You

Please take a few minutes to read my previous post about Fragile X and comment to enter the giveaway.  I will be randomly choosing a winner on July 22, 2011 - National Fragile X Awareness Day!

I often sit back and wonder what I would have said if someone told me what my life would be like with Ayden.  How the person I was then would have reacted to the news the my 4-year-old son barely said five words.   Or that I would be sending my three-year-old son on a bus to school, praying that he would be okay.  About how we deal daily with screaming, whining, and tantrums that include hitting, flailing, and sometimes even biting.   How the hitting, flailing, and biting aren't always related to tantrums, but often to anxiety or even to extreme happiness. 

I'm not very confident in the person I was before I had children.  I'm not sure I would have handled it well, because I still struggle, especially with patience.  I always knew that being a parent required sacrifice, patience, and lots of hard work.  I watched my mother do all of these things with grace as we grew up.  I just never understood the full scope of those things until Ayden, because how can you?  Some days I feel as though I will fold under the pressure.  I think of the list we have for Ayden of what we need to work on, and I panic.  I can't even being to count the amount of times I just feel like I'm not enough, that no matter how hard we work it won't be enough for him.  I worry that someday he will look at me and tell me I should have done more and that his life could have been easier if I had just done more.

I think every parent struggles with these feelings in some way.  I reflect on all the advice I was given while pregnant with Ayden - because anyone that's been pregnant knows everyone has advice for you!  (Even that lady behind you at the grocery store you've never met before).  I wonder why no one tells you to find what balances you.  To make sure from the beginning that you find that perfect amount of time that you keep for you so you don't feel like you're only a mother, but to remind you that you are also a wife - and more importantly you are, well, you.  I struggle with the balance, all the time. As a FXS carrier, I know I need to be more mindful of this because carriers are more prone to depression. I try to take time for me, but it always seems like there is something to clean, dinner to cook, a diaper to change; however, I find myself happiest though when I do take that time.  Even if it's just taking a long shower after the kids are in bed, it's time for me to clear my head, to refresh, and to reload on the patience I will definitely need for the next day.

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A Couple Things

Well, the school year is wrapping up this week for Ayden and I can hardly believe it's been a full year.  I think one of the most enjoyable things for me is looking back on how far Ayden has come socially since last year at this time.  It definitely makes me happy we put him in the ECSE classroom. 

One thing I am worried about this coming week is getting the transition to not having school down for him.  I know he'll get it, but I also remember spring break.  So.not.fun.  Most of the week was him whining and fussing and just overall very unhappy.  My plan is to start his "school" here Thursday, so he's not missing a day.  I'm going to try to focus each week on something for him, then we'll play games and work on things that follow that theme for each week.  I'm also going to try to start early-morning walks so we can get some fresh air while it's still cool out and separate our weekdays from weekends a little; however, I am a little worried about rainy mornings so I'll have to be creative and think of an indoor activity for those days.

Finally... we just received word that Ayden's iPad will be shipping this week!  I can't even contain my excitement that we'll soon have this wonderful piece of technology in our hands!!  I already have a good idea on how we will be rotating though apps with him and incorporating it into our days.  I also know he is going to go C-R-A-Z-Y when he see Angry Birds on the "big screen".

Also...as I mentioned the iPad, I want to also give another shout-out to Marissa's Bunny who is responsible for us being able to incorporate this wonderful device into Ayden's therapy.  They are currently hosting ANOTHER special needs iPad giveaway and I urge you to enter if this is something that could benefit your family.  For us, we knew an iPad would be great for therapy and also for an AAC device, but with the cost of the iPad and the $200 software to get it up and running - well - it just wouldn't have happened.  I cannot even begin to express my gratitude and what was done for us and am so happy to be sharing that they are doing this yet again, really before the first round is even completed! 

Please take a few minutes at Marissa's Bunny to see what they are all about, then checkout the post for their second round of special needs iPads. 

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Research Wednesday

For this weeks Research Wednesday, I want to focus on another clinical trial currently taking place.  STX209 is a little differnt type of drug than AFQ056 that I went over last week, but it has the same theories behind it.  It is essentially a receptor agonist, classified as a "selective gamma amino butyric acid type B receptor agonist" or GABA-B for short.  STX209 inhibits glutamate signaling in the brain and should, thereby, indirectly inhibit the excessive metabotropic glutamate receptor (mGluR) mediated protein synthesis implicated in fragile X syndrome. The current studies not only cover Fragile X, but also ASD which would make it an ideal candidate for our little Ayden should it hit the market.

Seaside Therapeutics is the company responsible for STX209 and is currently working on Phase III of testing.  The Phase II results were released last summer where parents and patients were reporting decreased outbursts and tantrums as well as increased sociability.  The results also noted many patients were successfully withdrawn from other medications including mood stabilizers, anti-depressants, and anti-psychotics while participating in the study.  While not listed in the actual results section of the Phase II trials, I have spoken with many parents participating in the trial who have repeatedly mentioned they also noticed speech improvements along with the behavioral improvements noted in the studies. 

"We're seeing reductions in a lot of types of outbursts and irritable behavior, along with increased communication and social behavior," says Dr. Randall Carpenter, co-founder, president and CEO of Seaside.

Overall, another very promising study out there for not only FXS, but also for Autism.  I can't wait to see where the next phase of testing brings us on this!

You can read more about STX209 and Autism (ASD) here
The clinical trials section about STX209 from Seaside is here
Also, the official clinical trial information for Phase III is listed here (You can also see any locations that are participating in Phase III from this link.)

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