Thursday, August 27, 2015

So, what in the world has been happening for the past eight months?

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It has been a long while since I have posted here.  I figured I'd give a little update on things going on in our world.

1)  We transitioned Ayden from his school and teacher he had been with since Kindergarten (and some of his classmates since he was 3!) at the end of the year.  Change is scary.  Really scary.  We also moved from a traditional calendar to a balanced calendar (basically year round) and moved from special education busing to general busing.  It was a BIG change - and all because Ayden was just doing so well in school he no longer qualified for the program he was in.  So, it was all very bittersweet.  We are now a few weeks into school and it is going better than I could have imagined.  Sure, there are kinks to work out.  Adjustments to be made.  We (as usual) have an amazing team though who continues to work us to give Ayden everything he needs to succeed and continue to push him to meet his full potential.

2) I was invited late last year to take a seat on the Board of Directors for the Fragile X Association of Michigan.  It has been interesting learning the ins and outs of how things run versus my idea of how I thought they ran.  The other Board members are great to work with though and I have been extremely happy to sit on the planning committee for our first conference hosted by our group since the International Conference for the NFXF was here.  We are about six weeks away and in the final planning stages.  Dr Marcia Braden is our guest speaker, one of the Fragile X experts for behavior (many would argue she is the best). You can check it out and purchase tickets at http://fxam2015conference.eventzilla.net/  They are only $25 / person and include lunch - super affordable!

3) (Not Fragile X related) I became completely hooked on a product last year, and ended up signing up to sell it.  On top of my many other roles, I now sell Jamberry nail wraps.  I do it mostly for fun, partly for the product/discount, definitely nice to meet more women.  Bonus:  My nails look amazing.  For real.  Check out my Instagram linked to the right to see some examples.   If you are interested in learning more about them or tying a sample, shoot me an email or check out my business page.  You can also request a sample here:  https://goo.gl/calDPf

4)  My most current addition to our life.  I am not our district representative to the county's Parent Advisory Committee for Special Education.  I am extremely excited about this and the potential to change and make the special education process easier for parents.  I remember just feeling alone and lost when we started navigating the whole process of IFSP, IEP, therapies, and services.  It is a lot and often topped with just learning to deal with and manage a diagnosis.  I think a parent last evening said it best "Sometimes parents are just struggling to get dinner on the table each day, giving them an ear to listen and a hand to help guide is more often than not essential for the whole family."  Helping other families has always been my passion when I talk about this 'world'.  It is why I started this blog in the first place, it has guided me every step with new things I take on (right behind doing everything I can for my own kids).

As you can see, my plate is awfully full.  It is all good and necessary things, but it leaves little time for blogging and sharing.  I will try to update more than every six months though.  And for anyone reading this who needs support or resrouces, please email me or comment here or even look me up on Facebook, Twitter, or Instagram.  All the links are on my page and I would be more than happy to help!



 
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Wednesday, November 19, 2014

Struggling

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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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Tuesday, July 22, 2014

14th Annual Fragile X Conference - Part 1

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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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Wednesday, May 28, 2014

Becoming Mrs. Rogers Blog Tour!

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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.


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







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Friday, May 16, 2014

Never underestimate the persistence of a little boy...

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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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