Thursday, December 27, 2012

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 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!


Wednesday, December 26, 2012

STX 209 - Update 3

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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.


Wednesday, December 19, 2012

2012 WEGO Health Activist Award Nomination

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I was nominated for a 2012 Wego Health Activist Award in the Advocating for Another category.  If you would please take a few minutes to "endorse" me I would greatly appreciate it.  I would love to see Fragile X get more recognition, and these seems like an awesome way to do it!  Anything that brings more awareness to our community is great news for all of us living with Fragile X and especially for those that are not yet diagnosed and struggling for answers.  You can click on the green "Endorse Me" button below or on the main page.  Thank you SO MUCH for your support.

Learn more about the Activist Awards here:  Wego Health Activist Awards


Monday, December 17, 2012

Twenty Acts - Making Sense of a Tragedy

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I've lived through so many horrible, senseless tragedies, but none that have just shattered me as this most recent one.  I found myself glued to the computer and updates as the story unfolded.  I read the first report of an entire kindergarten classroom unaccounted for and the tears began.  Little kids, the same age as Ayden...and by all account more than likely not survivors.  By now, we know this to be true.  That twenty little kindergartens and first graders left for school that morning and never returned home.  I struggle to make sense of this, to comprehend how anyone would be able to enter into a place - especially an elementary school - and look at little angels such as my Ayden and shoot them.

And this is how we as people cope.  We find a way to relate these things to our own lives so we can better understand them and then deal with them in our own way.  For some, it's by speaking out for things that we think caused this to happen.  Debates such as gun control and prayer in school are littered across the news and internet.  Individuals who feel they can "fix" this by taking away guns or giving guns to teachers.  Those who feel that prayer not being allowed in school could change things.  I understand the need to do something, but this is not the way.    To those focusing on these topics, I hope you open your eyes.  I hope you continue to read what I have to say.

Mental health.  People that do things like this have some kind of problem.   The media can speculate on what that exact problem is all they want, but no matter the name or diagnosis given - it does not change the fact that something is not right with them and there should be help before it gets to this point.  How many lives will be taken before this becomes a priority?  How many people will have to do something drastic to cry out for help?  How much longer can we [as a country] ignore this issue?  In a country where 1 in 10 people over the age of 12 are on some sort of antidepressant  what is being done?  I can't answer any of those questions...but I do know it is a problem and does need to be addressed.

Entitlement.  America is just not a group of peoples that promotes caring and love for others anymore - we instead promotes greed and a "me, me, me" attitude.  One where a majority of people think they are entitled to, well, everything without doing anything to get it.  Hard work, sacrifice, and giving to/helping our fellow man are just not the way of this country and to me THIS is where the change needs to begin.   With you, with me, with the countless others who are afraid, upset, and just flat out angry and these tragedies that continue to happen more and more frequently.

And then there is this:

Fifteen days left until 2013.
Twenty little beautiful children to honor.

Our first act begins today... We made a donation to one of the Sandy Hook victims.

Noah was one of the twenty children who didn't survive the Sandy Hook shootings.  He turned 6 years old on November 20, with his twin sister Arielle - who was in  another classroom and survived.  This is Noah's Aunt on twitter.

For others who may be interested....the link to donate to Noah's funeral is here.


Wednesday, December 5, 2012

Speech Video 12/5/2012

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It has been about two months since I made the last speech video for Ayden.  I sat down to make another one today.  We are now at 24 words and able to isolate at least 9 sounds.  Last time I did this on 10/10/12 we were only at 14 words, no sound isolation, and no attempts to imitate.  You may also remember we have since that time started on the STX 209 trial (our start date was 10/29)

I have more to add about STX 209..but that will be another post.  We are in the maintenance portion of the trial right now and will begin the weaning portion around Christmas.

He doesn't do all the words great this go around - partly because I'm rewarding him with M&Ms (forgive his open mouth) and partly because he just didn't want to do it.  Mom broke his routine by making him sit still to do some speaking.  His sound isolation isn't very good here either, school is having much more success with isolation than I am at home.  We didn't hear the /t/ isolation for almost two weeks after school started hearing it - which is why the /a/ and /i/ isolation is almost non-existent in the video (these are new).

Our current words:  Ayden, Mommy, Daddy, Issac, Emma, sissy, car, cupcake, turtle, turkey, oink, gobble, quack, woof, moo, yeah!, bubble, bus, birds, fish, ball, apple, brother, eagle.

Our current sounds:  /b/, /g/, /t/, /p/, /c/, /s/, /a/, /m/, /i/


Thursday, November 15, 2012

The Blankie Disaster

I started sewing around the time I was pregnant with Issac and his blanket (which he still carries around) was the first one I made.  I easily fell in love with it - sewing that is - for the same reason I love cooking from scratch.  So much love and care goes into the process and the finished product is tangible.   It's also relaxing and just fun to do.  I've since made quite a few baby blankets, but none I was so proud of or so much in love with as my baby girl's blanket.

I thought I would be smart this time and make two blankets since my kids seem to attach to blankets a lot. (I actually learned from speaking with other FX parents that most Fragile X kids are pretty clingy to their blankets fact!)  I made almost matching blankets, which in the end turned out not to be as helpful as imagined.  Each one had the same print on one side and the opposite side was either pink or brown.

It actually turned out not to be the smartest of ideas.  I ended up liking the pink one the best, and so did Miss Emma.  When she was born, her blanket was the first thing of hers she was put in.  Almost every single picture of her at the hospital has her wrapped lovingly in her blanket from Mommy.

At home has been no different.  Until she started sitting up almost every single snapped picture of her has been with her blankie.  Every time I rocked her and cuddled her to calm her down through her episodes of night-time screaming that lasted for months she was cuddled up with her blankie.   It was never far from her side.  

Then a week or so ago, we were at the doctor's office.  Ayden wasn't feeling well and attempting to throw himself on the ground in the parking lot.  It was just me with the three kids and somewhere between the pediatrician's office and the van Emma's blankie disappeared.  I didn't notice until we were at our next stop getting out of the van.  I went back.  A very nice woman had found the blanket and brought it into my pediatrician's office which is a room in a larger building.  They told her to put it on the bench in the hallway not knowing it was ours.  I know it was placed there because other people in the building saw it there.  However, in the five minutes or so that passed between this nice woman placing the blanket there and me returning, someone picked up her blanket and took it.  I gave each office in the building my contact information hoping whomever took it would find a way to get it to the building manager.  It has been almost two weeks now, and it hasn't turned up so I can only assume it will not.  I am utterly devastated.  I can't even talk about it without welling up with tears.  I know we have the brown one, but it isn't the one she loves.  It's not the one she cuddled with.  The worst part about all of it is that it's my fault.  If I just would have been handling everything going on with Ayden a little better and paid a little more attention I would have noticed it was missing before we left.  I can only hope the person that took her blanket needed it and that some little girl somewhere is a little warmer and a little happier because of it.

While it isn't exactly a happy ending - I am very thankful that the fabric store still carries the snuggle print I made her blanket from.  Yesterday I was able to sit down and work on this:

Then later that day, my fussy little girl was reunited with her very special blankie.  While she will not realize it's any different, I still will know. But...I am happy my little girl has her favorite blankie back.

This time, we have a backup that is pink.  
Just in case.


Tuesday, November 13, 2012

STX209 - Update 2

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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!


Tuesday, November 6, 2012

STX209 - Update 1

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We are one week into the STX209 trial.  The past week has been somewhat of a blur for me between the trip to Chicago (was that only last Monday?!) and all of us being sick including Ayden.  After the trip on Monday and because of some stomach issues we ended up keeping Ayden out of school Tuesday.  I sent him on Wednesday for his Halloween party and he did amazing.  On Thursday he was back again, but after over 24 hours of no stomach issues had a terrible diarrhea accident (relapse of the sickness, I assume).  The school sent him home and he was kind of lethargic and whiny all day so I Friday we kept him home again for a trip to the doctor.

So, one week out and yesterday was his first 'normal' day back in school.  Except his ASD teacher was out and his actual GenEd teacher had her first day back from maternity leave. Then mom went and changed sissy into her big girl car seat while Ayden was at school yesterday too.  We also haven't received the paperwork back from the clinic that the school needs in order to give him the trial at school.  Not a huge deal, but it is pushing back his bedtime and disrupting his schedule by about an hour.  Plus daylight savings time.  Did I mention it has been a crazy week?

Looking at all the changes in routine and sickness, I still am not sure whether we are seeing changes.  He handled everything so well, but better than normal?  I can't really say.  Our next visit is Friday, and I'm planning on speaking with his teacher to get her impressions too.   I'm hoping as the week progresses on a more normal schedule that I'll have a much better idea.

Wednesday, October 31, 2012

We've Begun!

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Ayden is officially enrolled in the STX 209 trial as of Monday.  If you haven't heard about STX209 (arbaclofen) then you probably haven't been reading my blog or following me on Facebook.  Here are just of few of the more recent articles.

It's difficult to not be hopeful right now.  This drug, which has been a life-changing thing for so many others is [possibly] sitting in my kitchen.  I'm doing my best to not think about the fact we may be on the placebo or not see any changes even if we are on the real thing and just focus on if we are or are not even seeing changes.  My heart is definitely filled with hope though, hope that this little pill will be able to do something for Ayden that I can't.

Our first visit had its ups and downs.  We had a long drive to get there, so Ayden was already a bit of a mess.  We started with the EKG for him and he amazingly sat very still for us!  I'm not sure how they get kids to not move for 10 seconds to get readings, but somehow he did and just smiled.  It may be the longest he has ever sat still outside of sleeping of course!

After the EKG we met with the wonderful EBK.  It was funny actually meeting her, because I have watched so many presentations and heard so much about her that I felt like I knew her already, but she of course didn't have any idea who I was.  I didn't ask for her autograph or anything though, that would have been awkward.  ;)  She asked if we knew anyone else in the trial or any of the other Michigan FX families.  It was pretty neat to hear her talking about one other FX mom in-particular and speak as highly of her as I do.  She was the first FX Mom I met after Ayden's diagnosis and not only listened and has been ever supportive and helpful but also put us into contact with the Michigan group AND the large Facebook support group - so while she may not realize it - she has a very special place in my heart.  (and when I meet her I will probably burst into tears, fair warning!)

Back to our visit though..We had to get a urine sample, which turned out to be incredibly easy.  Then our next step was the blood draw.  We knew it wouldn't be easy but it was much more difficult than expected.  Two attempts at getting his blood were met with terrifying screaming and flailing.  With a child who is extra flexible (especially in his elbow!) - it's very difficult to hold him still.  Then his veins were collapsing when they did get the needle in.  We ended up going down to the blood lab which went much better.

After that, it was just a lot of paperwork and we were given the first dose and sent on our way.   I know the next visits will be much easier and at least we have a better idea on the blood draws now when they are needed. I will keep updating as the trial continues.

Friday, October 26, 2012

Life Without the X

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I often wonder what life would be like without Fragile X.  How much easier would it be to not have to prepare so much for changes in routine or even simple things like a trip to the zoo.  I spend much of my days planning and keeping a schedule going to keep Ayden comfortable.  We learned early on that we can only push him so far before he breaks.  It's a difficult balance to keep, pushing versus comfort.  After 5 years, I usually walk that fine line pretty well, but every once in a while...well, it's not pretty when that happens.  It'd be such a relief to not have to constantly worry about it.

This is on my mind today because we have a lot of things happening right now.  On Monday, we will be taking a long drive to Chicago for our first appointment for the STX 209 trial.  It is a 4 hour drive there and back, plus the appointment itself and we're doing it with all three kids in tow.  I know it's going to be hard on Ayden (and the others) and have been dreading it.  I've been restraining myself from preparing Ayden for it because we want an accurate picture of his anxiety for the trial. I think the preparation helps my anxiety as much as his sometimes.  It's going to be rough, but we will get through it, for Ayden.  All this considered, Mr Awesome had his best friend's dad pass away unexpectedly last weekend.  The memorial service is 2.5 hours away in his hometown (where the kid's grandparents live) on Saturday.  In any typical house, this trip followed by a Monday trip to and from Chicago wouldn't be a huge deal - but it is with us.  And it sucks.  On top of all that, we also had all three kids and Mr Awesome sick this week.  Then a vomiting episode last night.  It is just so much, and it seems so unfair that things like this can affect Ayden so much.

My mind has a tendency to head down the worst road at times like this, heading to a place where I feel sorry for myself.  It's then that I take a step back and remind myself of all the things I wouldn't have if Fragile X weren't a part of our lives.  I have a five year old that still loves to cuddle me.  One that lights up any room with his smile and happy nature.  His unconditional love and happiness is amazing.  I have an ever-growing family of support and love that I never would have come in contact with had it not been for Fragile X.  A group of people that understand exactly what I mean when I say "Ayden had a meltdown in the store".  I have an understanding and compassion for children and people with special needs that I don't think I would have ever had without Fragile X in our lives.   I have a strength that I didn't know existed within me to advocate, fight, and stand up not only for my son but for anyone that can't do it for themselves.  You see, we have it a little harder than most people sometimes and I would never wish that on anyone else.  But through it all I am a better person, a person that I can be proud to be.  And I have Fragile X to thank for that.


Wednesday, October 24, 2012

CBS Detroit Most Valuable Blogger 2011

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I just found out this blog was named one of CBS Detroit Most Valuable Blogger for 2011 in the Lifestyle and Family category.  I don't know how I was nominated or anything, but was pointed toward the award from a friend.  Very exciting for a blog that only gets around 50-100 readers each post.  :)


Let's talk about the word...respect.


Well, let us just get right to the heart of this today with a picture....

...or two.

The internet is in an uproar this week about this.  At least the people I associate with.  You know, the ones who don't promote hate speech.

I've been reading articles and blog posts the past few days about these comments and just felt the need to put it in my own words.  I'm not nearly as eloquent as so many other writers on the internet, but what I say does come from the heart.  This word, is so much a part of people's vocabulary that many don't even realize the implications of using it or even think about who they may be hurting with their "joke" or "insult".  Just LOOK at the number of re-tweets and favorites in the pictures above.  It sickens me.

I'm not innocent of this either.  I had to decide to remove this word from my vocabulary.  Or attempt to, because I'm still guilty of it as well sometimes.   I'll get angry and then it will just slip out because it was just so much a part of my vocabulary.  (Wrongfully so I may add). Change has to start somewhere though, and what better place than with me.

I don't think anyone really understands why comments like "That's so r*tarded" or "Look at that r*tard" hurt so much.  The simple truth is that using this word is hate speech.  It is derogatory, offensive, and it excludes.  It puts those with intellectual disabilities [and those that care for and love them] outside your group and makes us different (in a negative way).  It is a mockery and de-humanization of people with intellectual disabilities and just as hateful as racism or sexism.

I wonder if the fallout of comments like these would be greater if Ms Coulter had used the word n*gger instead of r*tard.  Wouldn't that be a different story.  But it is the same to me.  Hate speech.  An insult directed at one person at the expense of a group.  There are words developed to demean every group of people in the world, and yet somehow while those words are whispered in shadows this one still remains acceptable to speak  to write, to publish.  Why?

I think the difference is people in those groups can stand up and say something (and DO). But in this instance - the intellectually disabled often only have their family, friends, and loved ones.  Those advocates who are willing to stand up and say NO.

This is not acceptable.
This is not okay.
This will not be tolerated.
It's not about free speech, people  It's about respect.
Show some.

Spread the word to end the word.

Update:  Elizabeth Higgins Clark posted a wonderful article about this as well.  Read it here.


Monday, October 15, 2012

Shatter the Silence

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In November of 2010, we were blessed to learn of a surprise pregnancy.  Although unplanned, our baby was not unwanted.  Our elation was short-lived; however, when I woke up to cramping less than a month after finding out.  I never imagined that I would have any problems.  I had two children, both planned pregnancies that progressed just fine.  It was apparent as the day progressed though that something was wrong.  It was a weekend, but I called our on-call doctor anyhow.  There is nothing that can be done though, and I was told to rest and come in on Monday.

We went about our weekend .  It was our Christmas shopping/tree decorating weekend and I didn't want to ruin that for the boys.  On Monday I headed to the doctor.  I had a lot of pain on my left side - sharp pain that was more than cramping.  They did an ultrasound and confirmed a miscarriage.  I knew already, but hearing it made it real.  For most, this is where the grieving and healing can begin.  For me, it really was just the beginning.

When you have a miscarriage, the doctors like to follow your hormone levels to be certain your body actually understand you are no longer pregnant.  For most, this only takes a short time.  For me, it went on much longer.  Each week I had to return to the doctor to have blood work completed.  Each week I was reminded of the loss I experienced.  Of the baby I would never hold.  I remember feeling pregnant still.  Cravings.  Nausea.  Mood swings.  I remember feeling unable to talk to anyone.  Putting a smile on my face because it didn't seem right to talk about it, especially over the holidays.

I would have been almost 14 weeks pregnant when the unthinkable happened.  I went to the bathroom as I thought I had a stomach ache but barely made it there.  I almost passed out sitting down.  The feeling got worse very quickly and I was taken to the hospital via ambulance.  The ER staff  determined I had a rupture of my left Fallopian tube and was suffering from a lot of internal bleeding.  I was rushed into surgery where my tube was removed and the bleeding stopped.  Thankfully, there was no permanent damage to the remaining tube and my body finally began returning to normal.

Through all of this I never have felt so alone.  I felt as though my body was broken and that no one could understand my pain. That no one would want to hear about it.   It took almost a year for me to even begin talking about it.  A year of being unable to think about a child I had never met without shedding tears.  Then I told someone about it and the next day was a little easier.  Every day since has been a little easier and all because a good friend of mine encouraged me to get it all out.  I wrote down every word, every feeling, everything I could remember and I sent it to her.  She didn't judge me or pity me.  She didn't pretend to have the answers or tell me it would be okay.  I don't remember the exact words she said to me because they don't matter, what does matter is she listened.  (Thank you, BB!)

October 15, is National Pregnancy and Infant Awareness Loss Remembrance Day.  Every single day, 2000 women lose a baby due to miscarriage, ectopic pregnancy, stillbirth, or infant loss in the US alone.   This day is for spreading the word about pregnancy/infant loss and raising support for those who are affected by it.

Today, I want you to know if you have experienced a pregnancy or infant loss that you are not alone.  That you need not grieve alone.  Do not be ashamed or afraid to talk about your loss.

Today, we remember.
Today, we grieve together
Today, we shatter the silence.

For more information, visit or


Friday, October 12, 2012

STX209 Trial

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Ayden turned five in July, which meant he finally was in the age range to participate in the STX209 trial I've posted about a few times.  At the time, we were unsure about putting him in it and actually had him on minocycline to see if we could see some improvement from that.  With only minor changes happening with the minocycline, we decided to do the pre-screen for STX 209 to see if Ayden even qualified and what all the trial entailed.

Turns out, he did qualify for STX 209.  We decided to go ahead and enroll him in the trial back in August.  Our nearest site is in Chicago, so it took at a little planning.  See, the first three visits are each two weeks apart and then there are two more visits about 4 weeks apart that follow the initial three visits for a total of 5 visits. In fact, the study actually includes 7 visits, but they combine the first and last two into one.  It is a lot of travelling for us.   Each visit is a one day trip to and from Chicago (4 hours each way).  We decided to enroll him anyways after all the amazing things we have heard regarding STX 209.

Well, our initial appointment was set for the first week in September.   A week before our appointment, we were asked to delay a month, pushing the first visit out to the beginning of October.  A few weeks before that appointment we once again were rescheduled but this time for just a week later.  As I'm sure you're guessing already since I haven't mentioned we started yet - just two days before our appointment we once again were asked to change our appointment.  Asked is probably isn't the right word...told we had to is better.  Our first appointment is now scheduled for October 29.  This pushes two of our visits into the holiday season (one of them actually has to be between December 20 and 25 - that's some nice planning) not to mention the stress of driving to Chicago in winter.  I'm incredibly frustrated at this point but what can we do if we want him to participate?

I'm hoping this will all be worth it for us.  If not, at least I know we've helped put others whom the drugs IS working for one person closer to having the drug FDA approved.  In the meantime, look forward to our first visit update *hopefully* around the end of this month.

Thursday, October 11, 2012

Happy 8 Months, Emmalina!

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I've been really terrible about doing monthly posts for Emma.  I think in some ways I'm still coming to terms with the fact she has Fragile X.  It seems an odd thing to say because we've always known it was possible and have known for sure since she was less than a month old.  More so than with the other kids, we were totally aware of what having a child affected with Fragile X could mean.  Regardless, every day with her is a reason to celebrate.  I worry and stress about her development, but constantly remind myself that we are doing all we can.

This past week, we celebrated 8 months with Miss Emma.  She's getting big so quickly!  This age is so much fun though.  Her personality is really beginning to emerge.  I cannot say enough how much of a handful this girl is going to be!  Developmentally speaking, she is still testing into her age range in all areas.  Being as overly worrisome as I am about her though, I'm seeing red flags in Expressive Language and Gross Motor.  I try so hard not to compare her to others her age, but she's not crawling yet and still struggles rolling from back to belly on her left side (though she can do it).  She also is not using any consonant-vowel sounds as of yet.  (ma-ma, da-da, ba-ba type of sounds).  Even with those areas though, she is still testing fine.  Our PT reassured me that without a diagnosis she would not concerned at all, but mama bear still worries of course!

I do want to touch on language a bit more.  When we go through assessments/evaluations some of them rate expressive and receptive language separately and some evaluations rate them together.  The one our PT uses rates them together.  That being said, it puts Emma in the 7-10 month scattered category for expressive language and solid 7-10 months for receptive language with 10-12 month scattered if they were measured separately   It is normal development for children to have receptive language come first; however, when I see receptive language progressing and expressive not following quickly (though still progressing) it is very close to what we see with Ayden and honestly, it scares me.

Despite my worries, I am soaking up every minute I have with this little girl.  The first year goes so quickly and I know I won't ever have a baby in the house to cuddle again.

Happy 8 Months, Emmalina!

Wednesday, October 10, 2012

Speech Video 10/10/2012

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I mentioned in my last post that speech was finally starting to come for Ayden.  Not in just little blurbs where we hear words and they disappear either.  We are consistently hearing words and sounds now made with purpose.  In addition to that, we are also seeing more and more attempts to communicate with both adults and peers.  And he's trying.   Some days we need to push him, but he is attempting to say words when we request him to do so and is beginning to succeed.  He still has a long road, but we're moving in the right direction.

Each week or two I'm trying to take a video of Ayden speaking.  I want to track his progress not just with him saying words but how he sounds while saying them and how quickly he can do it.  Between speech therapy at school and what we do with him at home - we are all working towards isolating sounds with him that he can make to improve his motor planning and speech.

We are currently at 14 spoken words:

Mama, Dada, Ayden, Bird(s), Bubble, Bus, Ball, Cupcake, Quack, Oink, Eagle, Apple, Car, Fish

Here is our video log from today.  He was a bit distracted, but I did get him to say them pretty decent.  I missed 'ball' and 'car' -  the rest are included.


Saturday, October 6, 2012

Parent Teacher Conferences

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Our school district is doing conferences a little different this year than normal.  The simple explanation is that the district has a lot of our elementary schools designated as Michigan Focus Schools and this is part of their action plan for 'closing the gap'.  I'm not going into the whole Focus School explanation here - but you can obviously look at the link above if you want.  The idea with the new conferences is that instead of being reactive by having conferences at report card time, we are being proactive.  The conferences consisted of us setting academic and behavioral goals for Ayden to be the focus of this semester.  We also signed a contract that spelled out what the parents and teachers were doing specifically to help the child meet these goals.  It's supposed to get parents more involved and hopefully catch any learning problems for the kids early.

I like the idea, but for us it seems redundant.  We have an IEP in place that is much more in depth than the conference goals were and we actually used and IEP goal word-for-word as one of our conference goals.

The conference did give us some time to sit down with both of Ayden's teachers though and just talk about how he was doing.  We had two conferences - one with the gen ed teacher and one with the ASD teacher (though the ASD teacher was in on both).  We do get daily updates, but face to face is always nice.  We (as always) have issues to work through with him; however, they are minimal.  He is playing well with other peers and making friends in gen ed - which is fantastic.  He is also comprehending the material they are teaching in class and for the most part outputting that comprehension as well.  His ASD teacher is phenomenal at adapting lessons to Ayden's learning style and basically just not taking any behavioral issues from him at all. She's helping gen ed to adapt their materials as well so Ayden can participate like the other kids in his class.  I'm extremely excited to see where he goes as the school year progresses.

The other person we met with was Ayden's speech teacher.  Of course, our main focus has always been speech with Ayden.  A lot of other issues he has will fall into place as his speech comes I think.  It seems likely as many of his issues get better the more he is communicating with us.  As per usual, our biggest dilemma is always figuring out whether his whining is because he doesn't want to do something or because he is anxious.  So, his speech teacher is doing amazing with him.  She is working through using PECS to request things in the classroom from not only teachers but also peers. He's already had one instance where he did request a toy from another peer, which is amazing!  On top of all that, Ayden's speech (like, actual WORDS) is starting to come.  We are up to about 10-11 words that he can say upon request.  Spontaneous use is (as expected) not happening yet - but SPEECH.  She is now working to isolate the sounds he can make so we can start practicing more.  We were hesitant about the SLP after our IEP, but I'm very impressed with her and really enjoy working with her so far (as does Ayden).

So...long, wordy post shortened:  We love Ayden's team he currently has.  They are all on-board with what we expect from him at home and are working very hard to make sure we are as consistent as possible no matter who is working with him.  It's pretty much everything we could have hoped for with where he is at right now.

Wednesday, September 12, 2012

Fragile X Infant Study / NC Trip

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In late August, we packed up the family and headed down to North Carolina - UNC specifically - for Emma to participate in the first part of a longitudinal research study for infants with Fragile X. (More on the travelling in a bit!)   She will have visits at 6 months, 12 months, and 24 months where she will undergo an MRI and developmental assessment.  The MRI takes place while sleeping, and the developmental assessment is very straightforward - especially for those of us that have gone through them for older siblings before!  Emma did fantastic with the MRI which was the only portion I was worried about at all.  Those machines are loud, and sleeping through them seemed near impossible; however, she made it through the entire MRI only waking up one time and going back to sleep fairly quickly.

We haven't received all the information back from the developmental assessment, but the summary looks very good.  Emma is where she needs to be in all areas developmentally.  At 6 months old, this is a huge relief.  I don't remember seeing delays with Ayden until around 7-8 months, so hopefully the next few months will keep her on track as well.  I still have a couple areas that are a concern to me even with her testing coming out fine.  I am praying those areas continue to progress though and the difference I see are just due to different kids developing differently.

As for the study, you can learn more about it here if you are interested.  If you are a Fragile X carrier and either expecting or have an infant under 6 months with Fragile X you really should look into this study.

Now, back to the travelling.  When I say we packed up the family I mean we packed them up, drove to Detroit, and then flew to North Carolina.  On a plane.  To say we were a bit nervous about flying with a 5 year old, 3 year old, and 6 month old might be an understatement.  Especially with Ayden.  We did our best to explain what would happen, trying not to explain too far in advance, and then hoped for the best.  As usual, my children never cease to amaze me.  After getting up early, riding almost two hours to the airport, riding in a shuttle, fighting crowds, and going through security -- ALL of the kids were meltdown-free through the entire flight.  Ayden was most excited when we took off.   Both him and Issac were just staring out the window.  After that, it was just like a car ride to them.  We landed with just as much ease, hauled them through another airport and into the rental van then finally to the hotel.  By this time it was far past lunch time.  We grabbed a bite to eat and then took a nap before heading to dinner out and Emma's MRI.   Our first day of travel, which is exhausting to me again just typing it - had us returning to our hotel around 11pm where all of us crashed. But we were meltdown free the entire day!

The next two days were not nearly as good - but for as much as we pushed the kids I couldn't really ask for much more than they gave.  Ayden especially did such an amazing job trying to be good and not whine.  I watched him teeter on the edge of meltdown a few times and bring himself back.  We did have a fantastic time, but it was infinitely exhausting.

The highlights of the trip were definitely meeting the wonderful team at UNC working on the study (I won't name their names here...but there are only two of them!) and how amazing everyone was that we encountered while travelling.  I can't even count the number of times we were told how polite and well-behaved our kids were.  One couple even told us we made travelling with three kids look easy (HA!).  It wasn't just the positive comments either - friendly faces, smiling, being polite.  We honestly never had one person shoot us a dirty look or look at us like we were inconviencing them.

All in all, it was a very successful trip - for a very good cause.


Tuesday, September 11, 2012


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September 11.
The day when the question you hear is "Where were you?"
The day when the word "remember" echoes through our nation.

As anyone who was old enough to know what was going on that day, I remember where I was when I found out.  I worked technical support at an internet company and was on the phone with a customer who had flipped her TV on for her child to keep the little one occupied while I helped her out with her internet.  I remember the silence, then the choice words she said - followed by "Get to a television, I'll call back later."  Many others in our call center were experiencing the same type of calls, and it wasn't very long before the many television sets in the call center were tuned in.   Though, when I think about that day and the weeks following this terrible tragedy, it isn't these moments I remember most.  For me, it was the fear.  Not fear for our country or fear of another attack - it was the fear for my friends and those that would later become my family.

My husband and I had been dating for a few years in 2001.  He is a first generation American.  His grandfather (whom he lived with at the time) brought their family to the US in the 60's.  Their country of origin: Egypt.  Their religion:  Muslim.    Most people remember how this country came together in those weeks following 9/11.   I remember how this country showed their hate to their own citizens.  I remember how we happily gave up individual freedoms and rights so that we could feel "safer".  I remember how ignorance of a religion and a few zealots [from that religion] brought out the worst in Americans and fueled the fires of discord in an attempt to put a face to the sadness and anger they were feeling.

Eleven years later...the hate and ignorance have waned some.  Those Muslims that live in America have done a fantastic job of educating people, but it's still not enough.  People are scared of what they don't know, what they don't understand.  This simple fact still remains though:  the way people are treated because of how they look, what their religion is, or what their name happens to be is not okay and should never be accepted by a civilized people.

So, I take a break from my normal Fragile X posts today to remember....

To remember those that lost their lives.
To remember those that risked (and gave) their own lives to help others.
To remember those that lost their lives in military service as a result of these attacks.
To remember those citizens that have been persecuted for the horrific acts of a few.
but remember that hate is never the answer.

Monday, September 10, 2012

Kindergarten Week 1

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We have officially completed our first week of kindergarten.  Successfully.  Happily.  No tears.

In case you're wondering, Ayden did pretty well too.  :)

If it wasn't quite obvious from my post about orientation, I was pretty impressed with our ASD room teacher.  I don't know her background, but she seemed to care about the kids she has a lot from our initial visit.

Our first week impressed me even more.

The communication pages she sends home each day that she calls a work in progress are amazing.  I know more about what Ayden did this week specifically speaking than I know about what he did in an entire year at preschool.  We had generalized notes from preschool, and often a teacher who didn't answer emails.  Preschool did wonders for Ayden and we really loved it there - but this is so. much. better.  To top off my week, I spent about a half hour on the phone discussing something that was sent home on the communication sheet.  Basically I just wanted to make sure a small problem was being handled right for Ayden.  Not only was it handled how I was hoping, but she then went on to explain how she made a small change in Ayden's daily routine that she thought would work better.  Which it did.  That minor change led him to work with minimal prompts at independent work stations by the third day of school.....and totally independently by the fourth day.

In gen ed, he's been working well in circle time and small groups.  He's also been playing with the other kids at recess. I haven't spoken with his gen ed teacher, but his daily reports are exactly what I'd expect - listening, doing what he's told, and transitioning between different times with prompts.

Our biggest concern to start out the year was how the cafeteria would work for Ayden.  We are absolutely insistent that Ayden be included and doing as much the same as his peers as possible.  We have always worked very hard with him to minimize his anxiety, but know that large groups with loud noises are triggers for him.  While we don't avoid those situations per se, we do give Ayden a lot of leeway when we put him in those situations.  We assumed it'd be hard on him for the first few days, but apparently that concern was for nothing.  He has been eating with the other kindergartners and doing just fine.  I guess Ayden decided he was going to be all grown up on us.  :)

So, that's the week in summary.  It really was fantastic to see him transition to full days and just do so well the first week.  I have a couple things we have to get set still now that his teachers are in the swing of things.  Hopefully getting his speech therapy going will be as smooth as the beginning of kindergarten was.  If not, mommy bear may have to start roaring. We'll all hope for the best though, I haven't been disappointed with his new school yet.

Thursday, August 30, 2012

Kindergarten Orientation

One step closer to kindergarten... you'd think after sending Ayden to preschool for two years I'd be ready for this.  It's different though.  At least it feels different.  I'm not really ready for it, but since when does that matter, right?

Today we had the chance to see Ayden's classrooms and meet his new teachers.  Yup..those are plural.  If you remember from my IEP posts earlier this year - Ayden is enrolled 1/2 time in a general education classroom and 1/2 time in an ASD room.  So, he has two teachers, two classrooms.

Gen Ed:
Ayden's gen-ed room is by all means your typical kindergarten room.  His schedule is setup so a good amount of his time in gen-ed will be in reading groups - where writing and math will be in the ASD room.  He will attend all specials, recess, and lunch time with this group as well.  His teacher will be a permanent sub until November.  I found this out at the end of school last year and I can't lie when I say it rubbed me the wrong way.  Putting my child who has issues with transitions and trust into a class where they are already aware the teacher will not be returning until November seems...I dunno....unwise?  Certainly not ideal.  I came to the conclusion then though that we'd try it.  It's a new school and I need to trust they have Ayden's best interests in mind and something made them choose this room and situation for him.  I have no reason to doubt anyone there, and hopefully will not.  So, we met the teacher today who will be with him until November.  She's nice, kind, and Ayden had no adverse reactions to her (or the room for that matter).   He said hi to her, shook her hand, and said thank you and good bye when we left with minimal prompting.  It was pretty amazing for him.  His teacher made the comment to me that she had been researching Fragile X on the internet.   I'd say it was the highlight of our visit...but there were totally better things coming.

ASD Room:
Ayden's school just added the ASD room this year.  New teacher, new room, new program.  Only a few things to be nervous about, right?!  We received our welcome letter in the mail last week...while I don't have it on me for the exact wording the first paragraph went something like this  "Your child will receive a communication notebook that will be sent home every day to keep parents up to date on what is happening at school and school up to date with what is happening at home."   The rest of the letter continued in this I was expecting I would like her a lot.  I wasn't disappointed.

I'm just going to cover highlights here..because there are a lot of amazing things that are so good for Ayden.  1)  The school got special permission to paint the room blue.  To make it more calming and welcoming.  It's  I love it.
2)  While the room wasn't all the way completed, there were visual schedules and PECS cards right inside the door for each child.  There's only five kids so they were all in different colors.
3)  They are integrating sensory needs of the kids into the actual room.  For example:  they have these chairs among other things.  Very cool.
4)  Probably my favorite "perk".  Connected to the classroom is an entire sensory room.  Swing, trampoline, spinning stuff, ball pit, tubes, exercise balls - you name it.  As part of the classroom schedule, the kids are given sensory breaks above and beyond any occupational therapy they have. My jaw may have hit the ground when I saw it.
5)  His teacher is awesome.  One of the first things she said to us was how she insisted that none of the kids were pulled out of the gen ed room for therapy etc.  From the look in her eyes when she was saying it, I think it was a bit of a fight for her to get it that way.  I know that wasn't the plan when our IEP happened!  She also had been researching Fragile X and seems very much on the same page as we are about what we expect from Ayden.

That's just a piece of what we saw today.  I knew we were making the right decision for Ayden moving him into kindergarten, but still had my reservations and I certainly still was second guessing myself.  I left today and any reservation I had was gone.  Ayden is ready for this, and our team this year, well, color me impressed.   It's going to be a good year for him, I can feel it.


Thursday, July 26, 2012

Prevalence and Autism

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New Research findings were released earlier today from the Fragile X Conference including updated prevalence numbers as well as linking the Fragile X protein (FMRP1) to Autism. I don't even know what to say other than these numbers made my heart stop.  On one hand, higher prevalence means higher exposure - which certainly leads to more funding for research.  On the other hand, this isn't something I would ever want more people to have to live with.  Here's the excerpts from the NFXF Twitter / FB feed.

From an unbiased based population study of 7,000 people to estimate the prevalence of Fragile X is now 1 in 151 females and 1 in 468 males.  With this study there was signification elevation of symptoms of FXTAS and FXPOI in this study.  That information was from Dr. Masha Mailick Seltzer, PhD, Director, University of Wisconsin Waisman Center

A second study showed prevalence results of 1 in 209 female and 1 in 401 males.  This study was conducted by Flora Tassone, PhD, Research Biochemist, UC Davis MIND Institute, University of California

The previous numbers were 1 in 260 females and 1 in 800 males.

Anywhere from 2-6% of children with Autism will have FragileX Syndrome.  There is a very close relationship between FragileX and Autism at the molecular level.

Read the full press release here:

Sunday, July 22, 2012

I Am One.

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I am one.
One in 260.

One in 260 women are carriers of the Fragile X Premutation.  To put that a bit in perspective...the average Facebook user has 245 friends.   So, there is a very high chance someone you are friends with on Facebook is a Fragile X carrier.

But have you ever heard of it?  
Approximately one-million Americans carry the Fragile X mutation, including approximately 100,000 with Fragile X Syndrome and are at risk for developing a Fragile X-associated Disorder.

Could that one be you?
Approximately 1 in 260 females and 1 in 800 males are carriers of the Fragile X Premutation.  Many of those carriers go undiagnosed until they have a child, niece, or nephew with a full mutation.

Has one of your grandparents or parents been diagnosed with Parkinson's?
Studies report that approximately 1/3 (33%) of all men over 50 years of age and 5%-8% of women with the Fragile X premutation will develop symptoms of FXTAS. 

Do you or any of your female relatives have fertility issues?
Approximately 20-25% of women with an FMR1 premutation will develop FXPOI. FXPOI covers a range of ovarian difficulties including early menopause, irregular menstrual cycles, infertility, sub fertility and premature ovarian failure (cessation of menstrual periods prior to age 40)

Is there a prevalence of fibromyalsia or auto-immune disorders in your family?New research is showing the prevalence of Auto-Immune disorders such as hypothyroidism and fibromyalsia in Fragile X premutation carriers.

Have one or more people in your family been diagnosed with Autism?
Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism.  Autism affects 1 in 88 children and around 2-6% of those affected have Fragile X as well.

Awareness is such an important thing with Fragile X because it isn't just something that affects you - it is genetic and passed from father to daughter, mother to child.  As it's name suggests - it travels on the X chromosome and may not develop into a full blown mutation for generations.  Today, July 22, is National Fragile X Awareness Day - a perfect day to share or learn more about Fragile X.

To learn more - visit the National Fragile X Foundation, FRAXA, or the CDC.


Friday, July 13, 2012

Awareness Day: 2012

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July 22 is a day that is very special to me for a couple of reasons. First, it's my anniversary, and each year with Mr Awesome is certainly a reason to celebrate!! Second, it is also National Fragile X Awareness Day. For those that are paying will know that Fragile X Syndrome is a genetic disorder that I am a carrier of and two of my kids (as well as countless number of other family members) are affected by.

To help raise awareness, the National Fragile X Foundation has put together a Facebook event for this day.I would more than appreciate your support and help raising awareness if you could go to the event and "attend". By simply attending and having the event cross your newsfeed you may be reaching even just one person who has never heard of Fragile X before. Awareness is so very important to this disorder that is among other things the #1 known genetic cause of Autism yet so many people have never even heard of it! Thank you so much to all of you who take the few minutes to do this - remember, just ONE person can make a difference and today that person could be you.

Here is a link to the public event on Facebook:

Thursday, July 12, 2012

Minocycline at Four Months

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It's been a while since I posted anything about how the Minocycline was going with Ayden.  We started at the end of March and now are mid-July - almost four months in.

I can say with certainty that the mino is definitely helping Ayden, just not in ways we totally expected.  In the middle of June, I somehow forgot to give him his medication for an entire week.  Over the course of that week we began to notice behaviors emerging that we hadn't seen in a while.  It didn't click until I realized exactly how long he'd been without the minocycline and put it together with the emergence of these old behaviors that what we were seeing was related to not taking the medication.  Within a couple days of starting the minocycline back up the behaviors again let up.  Very good news, and certainly a reason to keep him on!

Other things I've noticed are that he is really doing well with words and small sentences.  It's hard for him, he has to really work to produce any sounds deliberately - but he does.  And OH is it music to my ears!!  So far we can get him to say Mama, Dada, Ball, Birds, Bubble, Bus, and sometimes Car.  Outside of those, he spontaneously will say Yeah!, No, and All done (but not when prompted).  That's a total of TEN words he can say!!  In addition to spoken word, he also has "signs" for yes, no, all-done, please, more, sorry, help, and play.  Many of these happening after we started minocycline.

In addition to words, he really is attempting to communicate his wants/needs more to us.  He has continually amazed me with showing us and finding new ways to tell us what he wants.  We use PECS at home, but when there is not a card for what he wants he can get very creative.  He wants to be heard, and not just to get what he wants.  You can see him wanting to join in joking more and do things to make others laugh.  It's a joy to see his personality emerging even more than it already has.

So, while the mino isn't a miracle drug, it certainly has been helpful for us.  I feel like no single therapy or medication will work by itself to help him make advances, but a few of them together.  Between school, the work we do at home, and a little help from the mino we really have made huge strides in the past four months.

Wednesday, July 11, 2012

Potty Training Update

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Potty Training Update Completed!  *happy dance!*

That's right.  We toughed it out and have a potty-trained little boy!  I am following a couple other Fragile X families going through potty training this summer, and let me just say we are blessed that Ayden did so well.   I hope those others begin to have success like we did soon.

We started on June 16, and by June 26 we had a couple accident-free days.  We successfully went rustic camping for 4 days with only ONE accident and as of yesterday he rode the bus to school, attended school and went while there, and came home accident-free.  Now, I want to add that when I say he's trained, he isn't telling us he needs to go.  We tell him to go potty at specific times of day and he goes.  It's not perfect, but it's not diapers either.   And while he's still in diapers at night time, he makes it through the few naps he has dry as well.

Right now, we're still having some minor issues with bowel movements.  When we were sitting him on the potty quite often with the iPad or watching TV he would go if needed, but now that we're on a schedule he doesn't like to sit on the potty for extended periods of time.  He pees, claps, and is ready to go back and play.  I can't say I blame him, but since he's not having his bowel movements at the same time each day it's difficult for me to "catch".  Luckily, he makes a face when it's happening so if I'm paying attention I can get him there.  I'm sure these will lessen the longer he is diaper free, I know they did with his brother.

So..what did we do special?  Nothing really.  After he figured out how to "go" and what was expected when we sat him on the potty, it became much easier.  You can read how we started in a previous post.  I think that's the most difficult part for a kid anyhow who is learning.  I certainly feel that keeping him in underwear all day played a good part in our success.  He felt when he went, and was not happy most of the time.  I want to add that kid boxer-briefs were much more effective at him not liking the sensation of being wet because it didn't hold the mess in like a diaper does.  He was used to feeling a little wet on his butt, but having it running down his legs was what got him most of the time he had an accident.  It was messier for me to clean, but it was worth it.  The one thing I did to help with the mess was take our crib mattress pad and set that under him wherever he was.  It got washed a lot, but certainly saved my furniture from messes.

So, while I'm no expert -these are the things we did.  I hope that our experience can help someone else out there struggling with potty training too!


Friday, July 6, 2012

Five Years Ago

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Five years ago
My life was forever changed.
My arms were forever opened.
My heart was forever filled.
For you, my dark eyed, firstborn, perfect little boy.

You stole my heart from the first time I heard yours.
You continue to steal it with each smile, each tear, each year.

Today is your day.
Today you are five.
Today I love you.

Happy birthday, baby mine.


Tuesday, June 19, 2012

Potty Training - Day 3

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My last update on potty training with Ayden took place a year ago.  That isn't to say we haven't been working on and off, but I haven't updated because it's been much of the same thing:  Ayden holding it until we put a diaper back on him either for nap or bed time or until he can't anymore then having a meltdown because he peed everywhere.

Well, Mr Awesome and I decided we would have Ayden out of diapers during the day before he starts kindergarten in the fall.  It is our only focus right now with him.  In a perfect world, we will have him going to the bathroom as he needs but ... this probably isn't going to be the case with him right away.  At the very least, we are going to work on going on a schedule - meaning that he will hold it until his "time" to go.   We know he's capable of this, because he's been demonstrating that he can hold it for months and months.  The key for now is to get him going when we set him on the potty.  The rest will come, but he won't be in diapers.

So, Saturday morning we took off his diaper and put him in underwear.  We decided as well that this time Dad was going to be the one to start off.  Ayden has always responded better to his Dad, so I did not expect any exceptions when it came to potty training.

I've read a lot of articles on training kids with Fragile X.  I sent a bunch to Mr Awesome.  We are determined to make this time work out.  So, we're starting with the basic "sit your kid on the potty until they go then cheer them on" concept.  And hoping he doesn't hold it all day.

Day 1 - We had a decent amount of accidents.  The first was at lunch time.  Then a few more in the afternoon.  Then FINALLY in the evening he peed.  We made a really big deal.  We had him dump/flush (we're using the kiddie stool).  We cheered some more.  Then about 30 minutes later he did it again.   If we could have kept him up longer to keep him going we definitely would have, but it was bed time and after skipping nap he certainly was in need of some sleep.

Day 2 - We now moved to putting him on the potty seat for 15-30 minutes with 30 minutes in between each try.  We set the timer as he gets up for 30 minutes, then put him back on.  We had a few accidents in the morning where he started to go enough to dampen his underwear but not go down his leg.  We did a morning bath, so he probably relieved himself then too.  The afternoon was much better.  He leaked just once and went in the potty multiple times.

Day 3 - Only ONE accident all day, and it happened at the very end of the day.  We also had some poo, instead of just pees!!  Sitting on the potty every 30 minutes slowly lessening the time he is actually sitting on the potty to about 5-10 minutes (or until he goes or says he is done).  By the end of the day I increased the time between sitting on the potty to 45 minute intervals.

Three days in, and we're not doing terrible.  I think only time will tell if we're just happening to catch him going.  My guess is its' a little of both right now, but really any progress is great!  I'll keep updating how we're doing as we progress.

Monday, June 18, 2012

Last Day of School 2012

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As I sat down to write this post out, I remembered that I wrote a nice letter to Ayden at the beginning of this school year.  So it is only fitting to end the school year the same way.

Dear Ayden:

Today was not just your last day of school this year, but your last day of preschool in the Early Childhood Special Education (ECSE) program.  At the beginning of the year I was wondering how you would manage without a nap in the afternoon and with a more demanding classroom experiences.  Now I'm finding myself amazed yet again at how far you've come over this past year.  Putting you on the bus the first day of school was fairly easy, but you still needed the support of holding my hand.  Today, I stood at the door and watched as you turned around and waved good-bye to me and ran yourself down to the bus.  You didn't stop when the sidewalk turned into the paved road, you didn't even hesitate.  I followed behind you and by the time I made it to the bus you had already sat down, backpack off, and ready to be on your way.  I was so happy to see your independence at the beginning of the year, but couldn't have imagined it would be so much more just 9 months later.

This year brought so many changes for you, certainly for the better.  Your social skills and communication have skyrocketed since school started.  You are now eating with silverware and will sit down and color with your brother even!  Such small things in the grand scheme of life, but these are huge steps for you!

Next year is going to bring even more changes for you.  You'll be starting kindergarten at a new school, and going all day!  I can't imagine entire days without you, but know you will once again thrive and continue to amaze me.  The one thing that won't change is how proud of you I am.  

I am just overjoyed at how much you have grown this year, and especially since beginning in the ECSE program.  It certainly is bittersweet leaving behind the amazing team and school you've been with since you were 3 years old, but I am comforted by the fact I know we made the best decision for you and excited to see what the summer will bring!


First Day of Preschool -  September 2010

Last Day of School - June 2011

First and Last Day of School - 2011/2012


Thursday, May 24, 2012

We Have a Kindergartner!

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I know I've said this before, but I can't say enough times how lucky we are to have the team we do for Ayden. I look at where he was two years ago entering the ECSE program and am just so happy with how far he has come.  It is bittersweet to have attended our final IEP with them today, our transition IEP.  Next year, Ayden will be moving to a different school, different speech therapist, and different teacher. All kinds of changes for him as he enters kindergarten.

While we don't know who his teacher is yet for either the ASD classroom or general education classroom - we are certain it will be a good fit for him.  (We should know within the next few weeks who both teachers are.)  We received most of the services we asked for without any fights and while we did have a little bit of push back on a couple of goals; in the end we did find an acceptable middle ground.  We expect a lot more from Ayden then others do, and that is where the problem occurred.  I'm pretty sure a few of the goals they had he will have reached before the summer is out.  It wasn't bad - we just knew he could do better!

Over all we are very happy with what next year looks like.  We met a good amount of the new team today and there isn't a single person that even at first impression rubs me the wrong way.  I hope it continues in this fashion as we start the school year!  It's going to be a lot for Ayden at first:  all day, new school, and lots of new experiences, but I really believe he'll settle in well.

One thing that we didn't know going in and was discussed at the IEP is our district is doing a pilot program to see if ECSE students would benefit from extended school year and they have asked Ayden to be in it.  The program is going to be setup to run 2.5 hours, 3 days per week for about 4 weeks.  It's essentially going to be very intensive speech and language therapy, all 1-on-1.  It's going to be a phenomenal opportunity for Ayden.  It fit right into our schedule for the summer too.  We are very excited, to say the least.

Over all - a very good meeting.  (I'm really glad it's another year until the next one though!)

Wednesday, May 23, 2012

Therapy Wins

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We had our bi-weekly physical therapy appointment for Emma yesterday.  It's pretty awesome to hear at the end that she is doing fantastic.  As of 3.5 months, she is still meeting or exceeding all of her developmental milestones.  It's also a big relief.

Each appointment we've had has brought with it a new problem or issue to work on and we've just taken each thing in stride.  But now she's rolling over (tummy to back), enjoying tummy time, smiling, cooing, and just all around doing amazing.  Our PT went over each thing she should have accomplished by 3-4 months - and she's done them all.  She's actually even mastered quite a few of the milestones in the 4-5 month category.  We still have things to work on such as the high tone in her trunk/legs and the fact she extends quite a bit, but these are minor issues and are correcting themselves as we work with her and she grows.

I honestly am so glad we were assigned an amazing physical therapist for Emma.  I can't even begin to explain how much better everything feels when you have people working with your kids that truly care and just go over and above for you.  Ayden's occupational therapist was one of those people, and Emma's PT is one as well.

On another note...we'll be attending Ayden's IEP tomorrow so look for an update regarding him soon!