Stop with you and all that fucking procrastinating.

Yes, I know, I know.  I'm a horrible blogger. I'm a bad girl.  Please, hit me in the nose with a newspaper.  I have been TOTALLY (one of my favorite words, not to mention favorite to emphasize as if 14 year old girl) neglecting this blog.  It's one of those things that languishes on my 'to-do' list, and runs on the hamster wheel of 'shoulds' in my brain...should write more, should be better, should clean, should walk the dogs, should write thank you notes and return those calls and should....be more perfect-er.  (Hey, it's MY neglected blog, I can make up all the fake words I want OHHHKAY?).

Something significant and momentous has changed in my life - I. Have. WIFI.  WIFI!! Oh my lordie it is the best thing EVAHHH and I love it more than my kids.  Kidding! I love wifi equally to my kids.  I love to lounge in bed after throwing the kids in the bus, browsing my laptop and drinking coffee.  Frankly, I've thought many times about bringing the coffee machine upstairs to put on my bedside table BECAUSE THEN I WON'T HAVE TO MOVE FROM BED.  Ahhhh, that is my idea of heaven.  So thank you BJ Hill and your amazing technological skills, because in your purely nerdy IT way you have improved my life.  Watching Netflix, surfing the web, reading books and magazines, on-line porn, sighhh. Heaven.  So now, NOW - I really have no reason not to write. Except I'm a busy single mom of two kids and a business owner, with about 17 volunteer jobs and I'm...well...lazy.  THAT'S RIGHT I SAID IT.  I procrastinate writing, perhaps because I expect or need it to be some deep philosophical bullshit that makes my peeps  both laugh and cry.  I LOVE when people tell me it makes them cry.  So I think I procrastinate because I worry it won't be stellar and emotional, I laughed, I cried, it was better than 'Cats.'  Procrastinators are perfectionists.  Like right now - my kids are hungry and I'm procrastinating cooking them breakfast.  Oh wait, that's lazy.  Well that and I neeeed moooore cofffffeeee.  Bring the pot UP!

An update about the fam...Owen is doing well.  Much better, actually.  What I did NOT disclose in the blog was that he was increasing aggressive in the fall.  Fragile X is characterized by symptoms of 'hyperarousal' and 'overstimulation.'  It's comparable to when you go to Chuck-E-Cheese and within an hour (or less) have a huge headache due to all the sounds, kids running and screaming, and gunfights.  That is how every day is for a kid with Fragile X.  Anything that is transitional or out of schedule - even the TV or his sister being loud - can overwhelm Owen.  Getting on the bus.  Walking through a doorway.  He reacts with the 'fight or flight' mechanism - escape or flailing or flopping (falls to the ground, stays on ground rag-doll style).  So if the TV is on really high AND Bridget is non-stop talking, and she gets too close to him, he would 'swipe' (like an off-the-mark slap) or hit her.

I was starting to see it more and more, and she was his main target.  I can deal with a lot, but I have NEVER ever been a fan of violence or aggression, including in my counseling work.  I've always told parents to never allow it, including from young 2 or 3 year olds.  Nip it in the bud, folks.  So when he started to hit her, often, I was upset.  Very upset.  Devastated even.  And it felt like 'nothing worked.'  Addressing negative behaviors often reinforces them, so I was struggling with how to decrease it.  He was swiping at his bus driver in the morning, or other kids on the bus, or his teachers and friends at school-ugh.  Not just upsetting, but scary as his mom - how would this bode for the future?

I called Boston Children's Hospital and insisted on an appointment with his developmental pediatrician.  They attempted to blow me off for another month because that is when his typical 6 month appointment would be, but you know me.  So within a week we were in there, and I knew exactly what I wanted. Zoloft.  Noooo, not for me silly (I have beer) but for Owen.  Anxiety is one of the main reasons for the hyperarousal and overstimulation symptoms (which are technically more complicated and related to scientific stuff, like lack of production of a the FMRP protein myself).   Many kids with Fragile X are on an SSRI (otherwise know as anti-depressants) like Zoloft or Prozac; they also help reduce anxiety.  There is a study going on right now at the MIND Institute by Dr. Randi Hagerman about the usefulness of Zoloft, so that is the drug I wanted him on.

Thankfully, our developmental pediatrician, Dr. Rappaport, loves me.  He's told me many times I am a 'great advocate' for Owen, and he somehow even trusts my judgment.   Even though I have been known to argue with him at times, which has been pointed out to me by the kids' dad "You will even argue with the HEAD and CHIEF of developmental medicine at CHILDREN'S HOSPITAL" (what, I'm smarter than EVERYONE!!).  I asked Dr. R during this visit if I was a pain in his ass - and he looked at me surprisingly and said "Have I ever said that to you? No, I think you are a phenomenal advocate for him!" (Did you hear that beep? That was me tooting my own horn).  Plus Dr. R knows I'm smarter.

We started O on the Zoloft.  First a tiny little bit at first, .05 mls.  I don't even know what that it - 10 micrograms I think? Then, after a month, we went up to 1 ml.  It. Has. Been. Fabulous.  Transisiton are soooo much smoother, aggression/swiping has significantly decreased, his behavior has improved.  It's been awesome.  Throw in our new Ipad and I can take the kid anywhere now.  Even grocery shopping with them both has been easy - the magical formula is a car cart, iPad, and stolen apple (stolen because by the time we get to the checkout it's allll gone.  Sorry Price Chopper, we are thieves.)

Another very exciting update is POTTY TRAINING.  If you've every had to change the diaper of a 50 pound boy, you'll feel me on this one.  It ain't pretty.  He's been FULLY potty trained at school for about 2 plus months, but at home, naaah, he's got a sucker of a mother to take care of that for him.  At our monthly clinic meeting in December his teachers yelled at me (or questioned and encouraged me) to get on the ball.  Finally, over winter break I used the Ipad as a reward and BOOM.  That was it. Potty trained all day long.  Course, he's naked all day long, as anyone who visits my house or even sees my pix on facebook can attest to, but hey, whatever.  As long as he's peeing in the toilet and not the linoleum I don't care WHAT he's wearing. Or not wearing.

We also just finished up our MIND study this month.  After 5 months of Cali visits, we had 3 months of follow-up Skyping and ongoing monitoring.  I thought I would be happy when it ended - it's been so very very helpful, has taught me so many skills to help his language and behavior, but was also a part time job - but I was soooo sad when it ended.  These people, our 'girls' - Ashley, Monica, and the head researcher Andy - have been in our lives for 9 months.  They have seen us at our worst.  They have guided me through tough times, not judged, and been supportive and caring.  I KNOW they genuinely care about us.  So at the end of our last Skype session, saying goodbye, trying to express to them how they have helped us - I choked up.  Welled with tears even, dammit.  The Fragile X community - both families and professionals - is so small, and also so supportive.  They GET it like no one else does.  Losing my research peeps was a loss.  They reassured me that they are ALWAYS there for us, in anything we may need, ever (I sound like a Taylor Swift song at times, with all my always, nevers, and never evers) and I believe them.  THAT is the beauty of our Fragile X community - you are a call, keystroke or text away from people who are there to help you, both friends and professionals.

The National Fragile X Foundation is releasing a series of videos called "Forward Thinking."And yep, I have my 'own' video coming out in February (fame whore), but please, please check out this compilation video, which includes myself and many of the great friends I have made along the way.

It reflects the closeness of our community, our commitment to progress, and our positive thinking.

From the NFXF - "Forward Thinking is a video series of interviews with parents and others that we conducted at last summer's International Fragile X Conference. Members of the Fragile X community all over the world have found them deeply moving and inspirational, so we are pleased to present to you our 2013 video series with this compilation of the faces and voices you will see and hear as the year progresses."   

I hope all my friends and readers had a fantastic holiday season, and I have made the 'resolution' to myself to WRITE MORE.  Recommit to myself, my blog and my writing.  So I promise to check in more, update more, and BE HERE MORE in 2013.  Life is good, kids are good, and I am good.  All I need is to read last year's January blog to appreciate how far I have come and how much my life has improved.

Last year I printed out this quote, hung it on my bedroom mirror, and held desperately to it....
"She stood in the storm, and when the wind did not blow her way, she adjusted her sails." 
(Elizabeth Edwards)

This year my dear OLD friend Earle Collins quoted to me 'There are years that ask questions, and years that answer them." 
(Zora Neale Hurston, from "Their eyes were watching God")

I've adjusted my sails, and this year, I'm looking for answers.
Thanks for staying tuned and bearing with me, folks.  I'll see you around the blogosphere.  xoxoxo

Shawna Shenette Photography