Struggling

I'm not a complainer.  I see things that arise in our life as challenges to be solved.  I have a list I check each time we have to look at what to work on, an IEP, a behavior etc.  That list helps me to prioritize, solve the challenges in a way that works best for Ayden and for us.  So for me, every second spent complaining is one less second spent solving a challenge.  And the more time spend solving is less time enjoying life.

I have been struggling the past few months, though.  A  lot.  We are going through so many changes with Ayden that I don't seem to have handle on and keep losing footing.  It started this past summer.  We gradually began noticing changes.  Reverting to old behaviors such as more spinning toys, laying on the floor humming.   Perseveration of speech and even some toys.  Fixation on ideas.  He began asking for toys that he stimmed on when he was younger that he hadn't even seen in years.   Issac started school around the same time, so we were hoping it was just that.  When Ayden started back to school in September it was okay for him at school, but arriving home was...trying.   Almost each night was ending in tears or yelling (by one or both of us).  School was only seeing minor problems, so we just weren't sure what was happening.  We reached out to our doctor and started to try to tweak medications.  We had hoped his growth spurt that occurred directly before we starting noticing these issues was a cause.  The med changes only made it worse.  So we kept tweaking.  We added some sensory breaks.  We put more classroom supports in place. We discussed changing meds.  Then we noticed changes at home for the better so we decided to stick with the current tweak we had made.  Except within a week school was seeing the negative we had been seeing at home.  Hitting, pushing, refusing work, throwing his shoes, obsessive behaviors, loud, disruptive humming in class and OH THE CHEWING.  In the course of a month Ayden went from 85-90% inclusion to me receiving a call saying we had to fix it or we had to explore a different placement for Ayden.   We are talking about a kid who has been at least 50% inclusion in general education since kindergarten.  A kid who thrives on peer interaction.  Removing him completely is not.an.option. and [thankfully] our team is on board with this.

So, we backed off the tweak we thought had worked and went back to what we knew worked at school knowing that it may make home bad again.  Gradually the school days began to look up and then we had an amazing day for him.  I breathed a small sigh of relief.  The negative behaviors we had seen at home that trigger the changes did not come back to the same extent.  It was manageable.  School was getting better.  We would wait out the medication changes to completely take affect and then explore any changes over Christmas break.  Then came Monday - another bad day at school.  Then Tuesday - he hit his friend.   And me, I just felt done.  For the first time I can remember I wanted to throw my arms up and yell "I QUIT!".

I don't know how to fix this for him.  He isn't happy at school anymore.  With his limited vocabulary he can't tell me how to help him.  He can; however, tell me "I had a bad day", "I try harder", "I do better", and "I'm sorry, Mommy."   I'm so thankful I get that, so thankful for each and every word from his mouth.  There was a time when I didn't know if I would ever hear his sweet voice and it is not a memory I will forget.  My heart is breaking though.  We are working, we are not without a plan.  It is many faceted because we don't know the cause for certain (thus it is not typed out here).  I have no doubts we will make this better for him - the only question is how long it will take.  But it is the time leading up to the solution that is the most difficult.  The time where doubt and insecurities creep in and I struggle to keep myself focused and remind myself that the solution is not always easy.  Where I struggle to shrug off the worries and just enjoy life as it comes in spite of the challenges we face.  Where I have to fight not retreat into myself to cope.

I wish I had a nice, happy ending to this post - but for now I do not.  For those of you facing similar struggles on your journey know that you are not alone.  Remember there is always someone out there who will lend an ear - take advantage of it!

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14th Annual Fragile X Conference - Part 1

I arrived back on Sunday from what was the most fun filled, emotional, information packed week I've had in quite some time.   I want to share a lot of the information I learned, but putting it into coherent structures is quite difficult so hopefully this makes a bit of sense!

The conference started off with a medications discussion with Drs Randi Hagerman and Liz Berry-Kravis.  Not much of this session was new to me because I follow most of the medication trends/trials/science and we see Dr Berry-Kravis who is very good at keeping us informed.  One thing that was touched on was the need for better outcome measures for clinical trials.  I think any time medications were discussed this seemed to be drilled into people (for good reason!).  I will be doing an entire post dedicated to the STX209 (arbaclofen) trial results and explain a bit more about what is being done to help produce better outcome measures - it is a lot!

The rest of the first day is a bit of a blur to me.  I helped out on a NFXF video project then went right into facilitating a table at the lunch workshops which just left me emotionally drained.  Discussing feelings is never easy for me, but for something as emotional as that first piece of hope you received after your diagnosis it is even more overwhelming.  It is rather easy to bounce back though when surrounded by people who just "get it".

The things I took away from day 1:

--The Fragile X researchers and doctors are working tirelessly for our families.  They will leave no stone unturned to find a viable therapeutic medication and see it available to all families living with Fragile X Syndrome.
--Never underestimate the power of one-ness of this community.  Even when you feel broken and bared, there is another who has been there or is walking with you.  Just knowing and feeling that surrounding you is the best feeling ever.

I want to share a piece of something a fellow conference goer wrote.  It is perfectly written and fully encompasses the feeling I had while at the conference:

When we come to this conference, we all step out of our lives. Lives where Fragile X is a diagnosis, an abnormality that sets us apart from the norm, shoving us into a contra reality and a position of minority in our communities and even our homes in some cases. Even as scientist and professionals, at home we are facing things that no-one else in our respective fields is dealing with. Yet at this conference, our Fragile X Family, our kin, our kind, our community amass in such numbers that we become the norm. For 5 glorious days we are what's expected; we are the center of the universe. Here is a place and a time where the social norm is to speak too loudly, or too quietly or not at all. Where body language is everything -flapping hands, rocking bodies, ataxia tremors, irregular gates and all. Here no-one thinks twice as a child melts down, or an adult interrupts or says something inappropriately. No-one judges a young lady who breaks into tears when overwhelmed speaking about an emotional topic. In this place and time 1+1 = 3 because no-one gets math. We greet someone enthusiastically in the morning and shy away from the same person in the afternoon because the situation is different. We rule the dance floor, the pool, the elevators, the TV's and any mechanical/ electrical equipment that satisfies our sensory itch. At this conference smiles of acceptance, heads bobbing with understanding, patience, hugs, humor, laughter, love and charm are doled out abundantly and often. Eye contact is not. And this.. this is the norm for 5 glorious days.

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Becoming Mrs. Rogers Blog Tour!

I'm so excited to have a special blog tour on A Day at A Time today in celebration of a book that is sure to become a must-have for any family living with fragile X syndrome.

There are so many people that have held my hand the past 3.5 years as we have braved this fragile X journey, but Cindi is always one that has offered steady, thoughtful guidance to myself and so many others.  Her advice isn't learned in school or read in books but tried and true real-life experience from raising her two boys.

We are so excited to announce that Cindi Rogers first book, Becoming Mrs. Rogers is now available on Amazon.com at the link below.  This book was a labor of love for Cindi, as well as her husband, Chris.  The process has been a wonderful learning experience and going forward will continue to require more learning.

This book is a memoir of sorts about her life (and Chris') in dealing with the birth and subsequent diagnosis of fragile X syndrome for their two boys. The timeline travels from birth to present day and covers lots of different issues like school, behavior, therapies and day-to-day life.  It will take you through some downs and eventually some ups, only to come out with moments of joy and hope.  It was an emotional journey for me while writing it, for Chris while reading it, and we hope for you, too. 

We also hope that you might consider reading it, and/or sharing it (forward this e-mail if you like) with others in your life that might benefit from such a story.

http://tiny.cc/BecomingMrsRogers.com

I received her book last Friday and dove into it immediately.  As I stop and reflected after making it through the first half, I realized that I felt as though I had just spent hours with a friend telling me about her life.  Reminding me that no matter how difficult a problem may seem at the time, there is always HOPE.  

Becoming Mrs. Rogers is the true and heart-felt story of one couple’s journey into acceptance following a devastating genetic diagnosis for both of their sons. Their story, its highs and lows entwined with its wisdom and compassion, has been a beacon of hope for thousands of families struggling with fragile X and other autism spectrum disorders.

Fragile X is a common and inherited cause of learning difficulties, affecting a child's entire world, including social and behavioral problems as well as cognition and speech. Rogers not only tells her story, but also gives advice for new parents, sharing facts about…

* the physical and behavioral characteristics of Fragile X

* the effects of Fragile X on learning, functioning and daily activities

* medication and therapy

* how fragile X affects the family.

Cindi Rogers and her husband, Chris, share the perspectives and tools they embraced in order to help their boys be as happy and independent as they can possibly be. It is a story of challenges, tears, joy and hope.

 **A portion of the proceeds of this book are donated to the Rogers Neighborhood FX Family Fund which in turn offers scholarships to the NFXF International bi-yearly FX Conferences.**

Cindi is the mother of two sons, ages 23 and 25, who are affected with fragile X syndrome and autism. Since receiving this diagnosis, Cindi has become a leader and symbol of hope within the fragile X community.  Her positive attitude, creativity and defining can-do attitude has inspired families and professionals worldwide. Cindi and her family have travelled to conferences around the world to present her innovative strategies, helping families not only to live with fragile X, but to also thrive. It has become her personal mission to share techniques to help families generate ideas that they can implement in their own world, while helping their children with fragile X syndrome to live happier, more independent lives. Today, Cindi serves on the board of directors for Developmental FX in Denver, a non-profit that helps families just like hers learn to thrive in the face of fragile X syndrome. She lives and works with her husband and two sons in Littleton, Colorado, and together they love travelling the U.S. in their RV named Rocket.

Connect with Cindi:

Facebook -  https://m.facebook.com/profile.php?id=1302335567

Twitter -  https://twitter.com/MrsRogers2014

Rogers Neighborhood FX Family Fund--http://www.rogersneighborhoodfxfamilyfund.com

Blog-  http://welcometothefragilexneighborhood.blogspot.com/

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Never underestimate the persistence of a little boy...

You would think in my seven years knowing him I would have learned never to underestimate Ayden by now.  Yet, sometimes I forget and he has to gently remind his Mommy that he can overcome even the milestones that I don't think he's ready for yet.

For this story...let's skip our second.  Issac will be starting school in the fall and for our part we have shied away from night time potty training.  We like our sleep.  A lot.  And dislike washing wet sheets and beds - also a lot.  It was time though, so after Christmas we went cold turkey on night-time pull ups for Issac.  It took about a month, but we made it through without too many emotional scars.  It wasn't long after this Ayden began asking at night "Underwear?  Underwear?".  Despite being fully aware we would have a pee-pee mess in the morning, we allowed it because he asked, you know, with words.  I mean, after waiting so long to hear his voice he pretty much gets what he requests if it is the first time and done with spoken language.  As expected, we did have a clean up job in the morning.  We tried it one more night (again at his request) and the same thing happened so we started a new rule:  stay dry for one night in a diaper and then you can try underwear again.  His persistence has paid off the past few months where putting a pull up on each night has become a fight with tears.  We tried on and off to a dry night here and there but nothing consistent.   Around the beginning of April the before-bed fights escalated into meltdowns and we changed our "rule" to allowing him to try on weekends and as long as he stayed dry he would be allowed to wear underwear the next night.

That was on April 25 - three weeks ago.  He wore underwear on Friday and woke up dry Saturday.  Then Sunday.  Then Monday.  On Tuesday - we had an accident.  I made a split decision that night to let him try one more night and it paid off.  We made it another 5 days dry at night.  Three weeks later we have a total of three accidents since we started.  He isn't fully trained yet, but he will not be returning to pull ups.

I still cannot wrap my head around how big of an accomplishment this one is - and it is ALL Ayden.  We would not have started so soon with him if he hadn't asked.  If HE hadn't been so persistent we would not have continued.  This is without a doubt one of his biggest accomplishments to me and I am so very proud of him.

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Feeling Frustrated

It isn't often I put down frustrations on here - but I'm feeling a bit overwhelmed with them right now.  Back in the update for Emmalina, I posted about how we were having an OT out to evaluate her sensory issues.  I sat with the OT who basically did a sensory evaluation by asking me questions and very little observation (NO interaction) with Emma.  At the end, she told me Emma is a sensory seeker but seemed to be self-regulating so her issue were not affecting her everyday life.  She did not recommend any therapy to help.  It was mostly what I expected to hear so didn't think much farther on the issue and began the process of attempting to remove her from EarlyOn.

A few weeks later, Mr Awesome and I were discussing removing Emma's pacifier.  She's pretty attached to it, but not in a normal kid kind of way.  I feel like it is oral sensory for her which concerned me to just cold-turkey pull it without a replacement.  We did that with Ayden before we understood and even to this day have problems with him chewing on his clothes, hands, blankets etc.  It took almost two years to successfully direct him to a chewy tube and even now we have to remind him.  I do not want this to happen with Emma, thus the email to the amazing FX SLP/OT duo Mouse and Tracy.  I explained about sensory issues, her OT eval and what I was told then what we wanted to do.  Surprisingly to me, their response was essentially that the OT that evaluated Emma had been incorrect.  That a two year old cannot self regulate (even typically developing) and that pulling Emma's binky without a sensory diet in place to "replace" that oral sensory seeking would be exactly what we had happen with Ayden.

Thus my frustration.  I trust Mouse and Tracy without a doubt and they certainly helped as much as they could over email. So our options are then to push EarlyOn to provide OT for Emma or to do it ourselves.  We looked into private OT with Ayden and it just is not an option for us.  Lack of providers in this area, high prices, and no insurance coverage.  Even if we could combat that - there is an 8-9 month wait to even be evaluated.  The OT that evaluated Emma is the only one in our country for EarlyOn which means if I push service I will have an OT who doesn't think she actually needs it and will undoubtably not be very helpful.  

I decided that maybe it would be smart to get Emma an appointment at the FX clinic.  I was hoping that we could piggy-back her onto Ayden's upcoming appointment in May since we go to Chicago - but upon contacting them they just can't fit both in.  Our earliest date for her to be seen is in August.  This was not unexpected nor am I mad at the clinic (they are amazing), but is still just another thing.

Through all of this, we are also running into problems getting Emma OUT of EarlyOn.  They aren't helping us at all, so no need to be in it.  Yet they keep making excuses when I try to take her out.  We should finally have all the needed information soon and then hopefully that will be the end of it.

So, we are left with figuring it out ourselves.  It isn't all bad, but it is going to be trial and error and we will undoubtably make mistakes along the way.  My consolation in all this is that the sensory issues aren't that bad.  They aren't affecting her life much right now, and maybe won't ever.  I'm just so frustrated with the way this is working out.

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Update on the Family Part 3: Issac

This should be the easiest of my updates, no worries about any developmental issues!  Right now though, this little guy is my most difficult child.  He is mouthy, stubborn, strong willed, bossy, confident, and exactly a perfect mix of his mom and dad.  You know that kid your parents always tell you they can't wait that you have - Issac is mine.

The daily grind with Issac usually consists of him bossy his brother and sister around, a lot of tattling, and a lot of telling mom and dad how he thinks life should work (and pouting when it isn't the way he thinks it should be).  In with all that though, is this little boy who has an immense imagination.  He loves to draw, make up adventures, make/create new games...I listen to him and am just in awe of what he creates.  And he loves - oh does he love.  He has the biggest heart of most any child I have ever met.  Developmentally, he is like a typically almost-five-year-old.  He is more than ready for school academically and ready to start kindergarten in the fall.  Socially he will have some catching up to do once he does start, but I doubt that will hinder his learning.  He can do most of Ayden's first grade homework so if anything he be a little bored which will give him adequate time to work on social interaction.  Really though, totally typical for this age.  It will be much more of a struggle for Mom to send him to school and be without him for a full day!

This a very short update for Issac, but I didn't really want to leave him out.  It is odd having my non-fxer sandwiched between my two FX kiddos.  He teaches us how to be parents a lot (because we don't get feedback from Ayden) so in some ways he has the duties and responsibilities of our oldest child even though he is not.  I imagine the balance between those responsibilities and still being a younger brother will be something that we try to keep in check most of his life.  For now, we mostly have it though it will change and adapt as our family does.

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Update on the Family Part 2: Emmalina

I was looking back over posts to figure out when my last update on Emma was, and found most of my recent posts had been about STX209.  So we'll start fresh today!

Emma will be two in about 2.5 weeks.  As you know from reading previously, we have had her in early intervention since about 6 weeks old.  She started with just physcial therapy and a general developmental specialist.  At 10 months we added in speech therapy and dropped physical therapy.  Now, at 23 months old we are doing one final evaluation for some sensory issues with an occupational therapist and as long as everything is fine we will be dropping all services.

Needless to say, developmentally, Emma is doing fantastic.  I don't know her exact age ranges for all the different areas but for speech she is around 24-26 months.  Her vocabulary is huge right now and she is making small sentences.  We are having her fine motor checked out with the OT coming, but while that is lagging a little right now I believe this is just due to her language exploding.  She has consistantly been ahead in one area and a little behind in one then will catch up in a month or two.  It almost always worries me, but she always catches right back up.

Our areas that have small concerns are sensory and anxiety.  She very obviously has sensory issues, but I'm not sure how severe they are.  (the reason I am bringing an OT in).  They manifest very differently than Ayden's issues.  He has tactile defensiveness, but also craves deep pressure. Emma does not like deep pressure and often will crave vestibular input (like spinning in circles, rocking in a chair, or hanging upside-down).  She doesn't want these all the time, but you can tell when she is upset she asks for those things.  She has aversions to loud noises like the vacuum and the food processor too.  The other difference between her and Ayden is that she fights and often overcomes any aversions she has.  We had to teach Ayden to calm himself and help himself work through (which he still does not do well) but she understands on some level how to do it.  All these sensory things are tied to anxiety as well.  She presents as very shy, but I can tell it is more anxiety of going up to a person.  For example, we can tell her to go hug someone and she will hang back and act as though she can't walk forward until they put their arms out - then she runs into them.  She doesn't talk much around people she isn't around often either.   All of these things I mention can be typical kid things, but together and because she does have Fragile X I believe they are more.  What I'm not sure of is if she needs any therapy to help with it.

In the coming month we will have an OT evaluation from EarlyOn, then she will have a full evaluation at our 24 month visit to UNC and also her evaluation from the team at USC (two research studies we are involved in from when she was 6 months old).  We also will be getting her FXS test redone with the more sensitive testing to find out her AGG repeats and methylation percentage.  The new test is part of one of the research studies (I will also be re-tested).  For now, it is nothing more than good information - but going forward (into family planning years) it will be good for her to have.  You can look for updates on all of our research studies over the next few months.

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Update on the Family Part 1: Ayden

I've taken a long hiatus from the land of blogging.  I feel like there is not a lot to say most days that isn't a repeat of what has been said already.  I am inching in on three years of blogging here.  Yikes.

I want to start posting more.  Our life and how we live with Fragile X changes so often, and keeping up with that for newly diagnosed families is important to me.  I want to continue to be a springboard into the lives of those that are just hearing Fragile X Syndrome for the first time. Even for those whom are facing other diagnosis dealing with just overall developmental delays.   So today I move forward and attempt to do that, but first let me update you on the family happenings starting with Ayden.

Ayden is now six and a half years old.  I have yet to have a day pass where he does not surprise and amaze me - even moreso lately.  His language took a huge turn for the better over the past month and he is talking up a storm.  Not many sentences yet, but sometimes phrases and other times single words bunched together to get his point across.  This morning while waiting for the bus, Mr Awesome went outside to take the garbage out.  Ayden was watching him and said "Bye-bye Daddy!".  I explained Dad wasn't leaving yet, just taking the garbage out and he said "Leave.  Daddy no-no.  Leave.  Ayden.  Bus."  Not sentences, but he certainly is getting his point across.  I find myself having conversations with him lately where he is giving his opinion MUCH more often.  Mostly though, he is narrating the world around him.  It is beautiful and wonderful to watch him learn that his words have power.  I favorite (though I say favorite for lack of a better term) word to say is "Nope".  He uses this quite often when we tell him to do things.  It makes it much less difficult to tell the difference between him being obstinant and over stimulated.  Sometime I will catch it on video!

Academically he is doing well.  We would always prefer more, but we (his team and family) are all working hard to move him towards his goals.  Reading and writing have progressed the most since school started.  I haven't spoken with his teacher specifically recently but I feel he is close to on-par for his peers right now in reading.  The writing will come eventually.  Math is our problem area and biggest focus.  Somewhere between school ending last year and starting back up he stopped understanding 1:1 correspondence.  This is a key component of math.  (Side note:  for those that don't understand what 1:1 correspondence is - an easy way to explain it is the ability to understand when you have five ducks and wnat to count them that each duck is one duck.)  This has quite obviously set him back a little in math.  I think we have regained that ability, but not enough to start simple addition yet so we are falling behind in math.  Although not unexpected, it is still hard to see him struggle.  

Socially we have also seen many improvements.  Ayden really loves being around his peers and his friends.  Now that he is learning to communicate with words it is just even better.  We had some problems with hitting at the beginning of the school year where he would hit his friends (and/or teachers) if he didn't like what they were doing.  Many incidents where a peer would be done playing with him and he would hit them because he wasn't done.  I think we have moved beyond that (thankfully) especially as he has learned "Nope".  We are more than blessed that he loves his friends so much - it is certainly what is making inclusion in the gen ed classroom work so well for him.

There really is just so much happening with Ayden that it is hard to put it all down.  I do want to add one last thought though.  As his language is emerging more, so is his sense of humor.  We have always seen glimpses of it in the way he goofed around, but now it is amazing!  He can tell you what he is laughing at most of the time and often will just make silly jokes to make US laugh.  After six years, you become accostomed to communicating with your child in a certain way, and then the game changes.  It is just pure joy to see.  I often catch myself watching and listening to him with just tears in my eyes.  He has come so far and we are so very thankful.

And in case you missed it...Ayden was the face of the NFXF Annual fund this year.  VERY awesome to see his face everytime I visit their website.  I love being a part of an organization that is so close to my heart.  http://www.fragilex.org/support-the-nfxf/annual-fund/

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