Tuesday, August 4, 2015

Sad face... ; - (

You know...  the one that pops up when you are looking for a video on YouTube and it doesn’t play on the device you’re watching from, or the video has been removed.  We call that sad face in our house, Jackson understands that phrase.

Sorry I haven’t been blogging.  I started a new job as a team lead this year and I have been super busy getting into the swing of things.  Jackson has found a new obsession with my computer as well, so I can’t sneak away to write or share my stories.  Aside from that we have had so much going on, some good some bad, but I am sorry for not keeping everyone up to date on our journey.  Sad face...  ; - (

Sara and so many of our Fragile X families shared facts each day during the month of July on FaceBook, Twitter, Instagram...but I missed the mark this year.  Sad face....  ; - (  So for my followers, here are the 31 Shareable Fragile X Facts from the National Fragile X Foundation. Study them, there will be a quiz later.  I haven’t been on the FaceBook much, but it is important to share these facts.  Also...July 22nd is National Fragile X awareness day in case you didn’t know.  So many of our friends and family wore green to show support for our family and they tagged us on the social media.  I played softball the night of the 22nd and brought a temporary tattoo for my friend who has black and gray art on her body, she wears it well.  And hey ladies...she is single.  She was so excited, put it on, and exclaimed she was going to a real one.  She boasted that it would be her first color tattoo and that very weekend I got this text message and picture, “Let Jackson know I respect the challenges he has every day...  Let him know I think he ROCKS!!!”  The love and support our family receives is so amazing and I am so grateful to have such wonderful people in my life.

Sara and I don’t talk about the bad days or times that our brought us by the letter F and the letter X on the Intra-webs.  We always share the positive, the inch-stones, the fun, and the laughter.  Sometimes it is hard to find something positive to share though because you are exhausted and this is one of those times.  In the House that Jack Built, we are going thru one of those times. Over the past few weeks Jackson has been struggling, mostly in the evening time.  This is a common story you might read about from my fellow FX bloggers, or you might have heard while attending a conference or workshop for Fragile X.  Our Fragile X kids come home with good reports from teachers and aides, but then fall apart when they get home because they are exhausted from all the sensory input, working so hard to exist with their peers, and doing all the right things to accomplish their goals.  Home is where they can exercise their demons. Home life doesn’t have the same structure at school, even if we follow the same routines day in and day out.  Heck we all have our ways to unwind, relax after a long day (booze).  Towards the end of the school year we noticed that Jackson’s hyperactivity was off the charts. So after much deliberation we consulted with our doctor and we upped one of Jackson’s medications.  The first week of adjustment he took a few naps, but then we saw a drastic improvement from the constant jumping up and down nonstop hours upon hours. Now we are two months in this new dose and we have an ubber- crabby, agitated, aggressive, tantrum, preservative-speech, high anxiety, self-injurious, out-bursting 6 year old.  Is it the medicine? Is it because summer school is over?  Now camp is over? Are we not doing the right things?  Providing him enough supports at home? Not giving him enough sensory breaks?  Sad face...  ; - (

The last few days have been extremely hard on all of us.  A few weeks ago I injured back and discovered my body is really 41.  When you can’t bend over to tie your shoes without lightning bolts shooting down your leg for two week.   Hmmmm...it prompted me to see a doctor to tell me what Google told me which was I gots the Sciatica.  Sara is on a tri-weekly ear infection, chest congestion, drainage, allergy attack since this spring.  If that is not bad enough, there is the headaches.  These headaches are fairly common in the Fragile X carriers.  Sara participated in a sleep study that proved she is a chronic snorer which also plays a huge role into the morning headaches.  She is soon to be fitted for a device to help with that...but if you add up that with not getting sleep, we are a house of Snippity-Snips Crabasaurus Rex.  Sad face...  ; - (   

<- Note: we just started introducing essential oils in our house and they have been doing wonders for the Sciatica and the headaches. We are work in progress...>

Fast forward to last night...  I get home from work.  As I open the door I am greeted by my bouncing boy, “Na-na’s HOME!  Eeeeeee!”  Then he bolts back to the sliding glass door.  The neighbor behind us was getting their grass cut.  Sara is using our new essential oil cleaner to wipe down the counter tops as the lawn care dude finishes and leaves.  We all sit at the table so Jackson can tell me about his day.  Sara starts the conversation, prompting Jackson to finish.  Goes something like this:
Sara: “Jackson, who came over to see you today?”
Jackson: “Casey!”
Sara: “Not Casey, but Miss Ssss”
Jackson: “Sar-rah!”
Sara: “Where did we go...”
Jackson: “Bowling...”
Sara: “Yes, downstairs she took you to play bowling...but where did we take Ma-ma’s car”
Jackson: “Lib-ary!”
Sara: “What did we do at the library?”
Jackson: “Com-com-com-cuter”
Sara: “That’s right, Miss Sarah helped you on the computer. What else did we do?”
Jackson: “Two books...”

So the two of them will go back and forth to tell me about Jackson’s day before I go up and change into shorts.  When I get back downstairs, Jackson is in the recliner rocking and watching Lady Antebellum YouTube videos.  Sara leaves the room as I sit on the couch.  My body melts into cushions, it was a long day, when I see a flying iPad heading my direction out of the corner of my eye. My reflexes move my arm quickly to protect my head as it slams into my not-so-funny-funny-bone, just happens to be the same arm of my tennis elbow so I can’t stop my loud reaction, “OUCH!” Damn that hurt I thought as Jackson bolts up and takes off for the dining room window saying, “Boo-boo, sad” as he slams his head into the window.  Sara puts herself between him and the window, points him back into the living room.  Sad face...  ; - (   

Things come to a brief calm as we quickly discuss the dinner plans and who is making things. Sara stays with Jackson, while I go cook.  I can hear her reading his new books and they are giggling and having a great time.  This completely melts my heart to listen too as I try to forget about my long day at work and my throbbing elbow.  Did we cause this by prompting him while he was hyperaroused from watching the lawn boy?  Are we meeting his sensory needs? Reminding myself... BIOLOGY, BIOLOGY... he didn’t’ mean to hurt me. Sad face...  ; - (   

Dinner is now served...everyone is at the table. 

Jackson: “GEEN-BEANS!”
Sara: “Yes, first chicken – chew-chew-swallow, and then green beans”

Jackson eats a few bites before he starts taking the food out of his mouth throwing it across the room, some of which hits me in the face and gets in my hair. I don’t make eye contact, or say anything, just keep eating.   Good thing we have dogs as they clean up the floor. The verbal prompts are getting to be too much, so Sara grabs his visual aide.

Jackson: “Na-na ALL DONE, Na-na all done....”

Lately Jackson has been perseverating on those at the table being done with their meal.  Doesn’t matter if we have full plates or not.  We are still trying to figure out how we should respond.  This night we keep pointing to his visual, not talking to him or each other, as we all finish our meal.  There is a lot of trial and error when learning to live with Fragile X.  Sad face...  ; - (

Jackson and Sara leave to go do their nightly FaceTime with Pat and Sinky as I clean up. Typically as a reward, Pat will play guitar for Jackson for making good choices at dinner, but no reward this night. Sad face...  ; - (

Once dinner is cleaned up and FaceTime is over we tell Jackson he can earn a walk or ride in Na-na’s car if he can make good choices, keep a calm body, nice hands, listen, and take his medicine over the next 30 minutes.  Jackson asks for the timer and it is set for 30.  That is a long time to wait, but as he is watching the timer on my iPhone he is perseverating on it. 

Jackson: “1, 2, 3456, timer done!  I, 2... 10, timer done!”

Sara and I discuss how this hasn’t been working lately because he is getting too excited and hyperaroused while watching the timer, which if you haven’t figured out yet will lead to a bad choice.  Sad face...  ; - (   

Jackson: “1, 2, 3456, timer done!  I, 2... 10, timer done! Jackson POOP!”
Sara: “Jackson, do you need to go the potty.”
Jackson: “Yes! Timer DONE!”

Sara leads Jackson to the restroom while I shut off the timer.  By the time he is done and comes back into the room he has forgot about the timer.  Sara goes in the kitchen and takes her medicine and Jackson heads to the window where he spots the neighbors new puppy.

Jackson:  “Puppy....WOODS!”

I go over to him while he is looking at the puppy running around.  We watch for a little while, then the puppy goes inside, just in time for his medicine.  After the medicine routine, Jackson grabs his shoes...he is ready for his walk/ride.  We tell him he did a great job at following directions, keeping a calm body...ask him if he wants to go for a ride or a walk.  He chose ride.  We all get in my car and head to the “Deer watching” spot.  The deer are not out though...so we wait for a little bit, sing the deer song a few times, and Jackson asks for school.  So we start to drive out of the subdivision to drive by school, when Jackson gets too excited and smacks Sara several times on the arm.  So we turn the other direction and head back home.  Jackson figures out that we are not driving by school and gets upset.  He slaps Sara a few more times before we make it home. Sad face...  ; - (

Hoping we can find a calm in the storm we offer him two calming choices once inside...  either he can rock in the chair while listen to headphones, or he can lay on the floor with this weighted blanked while we work on deep breaths.  Jackson wants none of those options and heads for the dining room window.  Maybe the deer are out there, maybe Charlie and Adam are playing catch, and maybe there is a hop-hop.  He is shouting all these things while on his mission to the window.  While he is heading to the window Sara and I look at each other with defeated expressions. Then WHAM! Jackson slams his head into the window, none of things he wants is outside the window. WHAM!  I head over to stand between and guide him away.  For the next 45 minutes Sara and I act as a wall barrier between the dining and living rooms. We are not speaking, just holding him close, letting him press his head against us, letting him push while getting pressure on his joints, letting him scream and cry, letting him calm himself down without anyone else getting hurt, once and awhile guiding him to his soft pillow and weighted blanket without words. In my mind I am playing over and over, “Remember it’s the biology”. Sad face...  ; - (

It’s nights like these that break your heart because you know he can’t help it.  It’s nights like these you play over and over in your head, what did we do wrong?  Should I have grabbed the Calm Down Book sooner? Should I have not let him go for a ride? Should we have not done FaceTime?  Should we have not had him sit down after lawn boy was finished and tell me about his day? Is this the right dose of medicine for him?  It’s nights like these you want to tell Anxiety and Hyperarousal to Fuck-Off or tell the ABC’s of behavior to take a Fucking hike!  It’s nights like these that keep you up at night when everyone else is sound asleep.  It’s nights like these that are always in the back of your head...  I know we will get thru this, we figure out the equation and find the right supports, but for now..... Sad face...  ; - (


  1. Sad face :-( It gets better. Love you and your beautiful family.. ๐Ÿ’œ Get some rest.

  2. Sad face :-( It gets better. Love you and your beautiful family.. ๐Ÿ’œ Get some rest.

  3. Thanks! for this very informative blog

    Aaron Grey
    aarongrey112 at gmail.com

  4. Hello,
    I love reading your blog. I started two months ago when my son was diagnosed with FXS.
    Please keep blogging!