The Hard Reboot

Around 5am, after Bob left for work, I heard the pitter patter of Jack feet scuttle in my direction.  We snuggled and continued to snooze until 9am.  Jack was content, shoveling french toast and an orange into his mouth and watching "Team Umizoomi" for the umpteenth time.  Our speech therapist, a lovely lady named Alison, arrived around 10:15am.  All hell broke loose.

Alison sat on the floor and asked Jack to play with her, and Jack lost it - screaming, flailing and throwing himself on floor pillows.  Tantrum time a-go-go.  I'm sure after the last few days, the last thing he wanted to do was meet the demands of another outsider.  He climbed into his swing, muttering and looking in any direction except ours, and eventually quieted down.  Alison suggested I put on his favorite music.  So, I headed over to our stereo system and attempted to load a little Justin Roberts on the iPod.

No sound.  That's funny...it worked just fine the last time.  I looked at the screen, and the iPod kept flipping from one song to the next, skipping over the tracks.  Okay, this happened before.  I decided to give it a hard reboot.  Usually, that system restart solves the problem.  Instead, I was faced with a big red X.

A big red X?   C'mon!  What does that mean?  According to Apple, this happens sometimes, and it gives a spiel about going into disk mode and restoring the iPod back to factory settings, thus deleting everything saved on it. 

This got me thinking.  When Bob called and asked for the daily update, I shared this lovely new problem.  His response, "You've got to be kidding me. Awesome.  That's just awesome.  I give up."  I said, "I wish there was a way that we could restore our lives back to factory settings."  Is there a button somewhere hidden on our bodies?  Touch your nose and blink three times maybe?  Even better, could we choose a restore point, saved at a particular point in our lives, and start over from there?  This led to a nice post-dinner discussion between Bob and I.

Bob's System Restore Point:  He wants to return the night before he brought our cat, Sam, home.  That little pisser.  Literally.  I think he feels that Sam triggered our black hole of mad, bad luck.  Then, Bob claims that he wouldn't have let me fall down the steps and break my leg.  We would have picked a different "new" car (long story).  And he wouldn't have burned his ankle with blistering hot coffee today.  Fair enough.

Rebecca's System Restore Point:  We took Jack to a friend's house for a playdate last summer, prior to his diagnosis.  Well, she's a friend of a friend...this was our first time hanging out.  It was a complete disaster.  Jack cried the entire time.  Their little boy, only a few months older than Jack, was precociously verbal and anxious to play with our son.  This was the first day that I knew in my heart that something was going on with Jack developmentally.  Pair that with this couple being a several tax brackets up from us, living in their $200,000 house and debating about which pool to install in their backyard while we exist paycheck to paycheck in our Sharpsburg rental house and spray our son with a hose for fun.  Yeah, that was a great day.  Having that choice to make again, I would never pursue that playdate.  It still resonates with me and makes me feel like crap. 

Okay, here we go...wish me luck!  Let the system restoration commence.
Touch my nose.  Blink three times.
Nothing.
Press my belly button and jump five times.
Do the hokey pokey and spin myself around.
Ugh.  No good.
Maybe a cocktail followed by a good night's rest? 

Well, that stinks.  Doesn't matter...my guess is that we'd make the same damn decisions the second time around or different decisions that lead us to the same damn place.  What matters most, I suppose, is what we do next and how we handle the consequences.  New day, new decisions, new problems to solve.  Until I find the magic system restore button, we'll settle for a daily system restart and see what happens.

Home Again, Home Again...Jiggety Jig?

Three days, two nights at Children's Hospital.
Jack enduring a 24-hour fast.
What seemed like 20,000 toe pricks to test blood sugar.
Lowest blood sugar during the fast:  68.
Probably a $35,000 medical bill heading our way.
Five medical doctors giving us NO input into why our son's blood sugar fell to a critical level on Thursday.

Here we are, home again and exactly where we were last December with no answers.  To the doctors' credit, they tried everything to get his levels to fall low enough to run the blood tests needed, but they could not duplicate the conditions that prompted the blood sugar fall:  a virus and high fever.  Their parting advice to us?  Make sure Jack eats three meals a day and three snacks, one before bed.  Like we don't do that already!  Since his autism diagnosis, we already obsess about every bite that goes into his mouth.  One positive they tried to relate to us is that he CAN keep his blood sugar within a healthy range for 24-hours without food.  Before discharge, we had this enlightening conversation with the doctor:

doc:  Do you have any questions for us?
me:  But, doc, this is so bizarre.  Why did this happen twice?  Do we need to be extra vigilant when he's sick?  Why would this happen if he's otherwise not showing signs of hypoglycemia and ate good meals the prior day?
doc:  You're right.  It is bizarre.  Yes, it's a good idea to watch him closely when he's sick.  Remember, three meals/three snacks per day.
me:  Yeah, thanks.
me (thinking):  Douchebag.

There are three blood tests taken last night during a normal sugar level that did not return from the lab before we left, and the endocrinology unit will call us this week with those results.  We could not start the battery of tests needed to really get to the bottom of this because his blood sugar never reached that critical level.  They also referred us to the Neurology Department for Jack's autism.  I'm not sure what that will entail, but it's another route to pursue to maybe find some answers. 

Funny thing about the hospital...every person that walks into the room asks you the same questions over and over and over again.  The staff obviously does not read the reports taken from the ER, the nurses station, from doctors visiting earlier in the day, or from prior hospital visits.  Here's a funny conversation we had with a nurse, who obviously had no idea that Jack had autism or could not verbalize, which was something we told at least ten people prior to this moment, ten people who either wrote or typed this information into a report:

nurse:  Hey buddy!  How are you?
(Jack stares at her and turns toward Bob's arm)
nurse:  Oh, are you being shy?  Don't worry, we'll have you talking by the end of the night!
me:  Actually, he's nonverbal.
Bob:  But if you could get him talking, that would be great.
(Awkward silence)
nurse:  Oh...okay. (uneasy giggle)  Uh, well, if you need anything, give us a buzz!

Well, I guess we go back to our "normal" now.  Time to reclaim the house back from the cats and their stink.  Time to get back to work and refocus.  Time to shake off the last three days and move forward.  We can't help asking, "What next?"  We're on edge, for sure. Since November, we've been reluctantly riding a downward spiral of bad news, bad luck and bad juju.  If anyone knows a good witchdoctor or voodoo priestess, give me a call.  We'll try anything at this point!

Hello, Nurse!

Guess where I am? C'mon...just guess. There's a little hint in the blog title.
The hospital, you say? Ding, ding, ding! Circle gets the square.

I'm sipping hospital grade coffee from my makeshift sofa bed and watching Jack sleep in a caged crib right this very minute. Time? 11:12pm. Some folks who witnessed the diasater that was our Christmas holiday might recall Jack's blood sugar reaching an all-time low of 8. Yes, 8. Normal blood sugar levels fall between 90 and the mid-100s. A high fever and a nasty virus caused his levels so drop that viciously, and after a hypoglycemic seizure and three days at Children's hospital, he was right as rain. However, his blood work never gave us any indication WHY this happened so rapidly.

Flash-forward to yesterday. Jack spikes a fever of 101.5, but other than being a little more spacey than usual, he seemed fine. Ate good meals and played in his typical Jack manner. This morning he was sluggish and refused to eat breakfast. Around 11am he fell asleep on the couch...not typical but he was under the weather. He slept. He became catatonic. Two hours went by, and I started wiggling his legs and quietly called his name, "Jaaack. Time to wake up!". Nothing but a slight leg movement. I called Bob who agreed with me that the poor guy is probably just exhausted from being sick. I let him sleep another 30 minutes. I started calling his name a little louder and wiggling him more vigorously. Nothing.

I'm in full freak out mode at this point. I grab our handy dandy blood sugar tester thingy, which from my description you can tell I obviously never used before, and unfolded the directions. Reading, reading...uh-huh, I think I got it. Crap,I can't get the lance to stay in! Dammit! Okay, okay. Got it. Time to prick his finger. Done. Why isn't it working? Breathe. Not enough blood. Prick a second time. Jack moans. It's taking a reading...31. Fuck. This can't be happening. I call Jack's pediatrician who advises us to hastily head to the ER. Bob is working out a way to escape his shift, and Amanda escorts our sad asses to the ER where we sit for five hours before moving upstairs to a room. Basically, the ER docs think, "Hmmm...that's strange this happened again. Let's keep him here and watch him a while to see what happens next." Apparently, the endocrinologists want to wait until his blood sugar falls below 70 to draw blood and start testing. If it falls below 70. In the ER, after eating some chicken and sweet potato fries, he got back up to 135. Two hours ago, it fell down to 83.

Part of me wants it to fall a wee bit lower to get these tests started. Am I going to panic attack every time Jack gets a fever now, worrying about his blood sugar levels and praying he doesn't seize? Why does his metabolism go haywire every time he gets a virus? According to the doctors, this is a severe and abrupt physical reaction to a minor malady. There was mention of bringing in the neurology team as well because there's speculation that this goes in hand with his autism. Great. But we won't get answers unless his blood sugar falls below 70. Another problem with no easy solution...uncertainty ah-gain. Do you see the common thread in this daily digest yet?

Well, the nurse will be here in a few minutes for another finger prick. I'm going to gulp down the rest of this crap coffee, which doesn't improve as it cools, and wait for the next reading. Lord, have mercy.

Sleepless in Sharpsburg

It's a familiar scene in our house.

I think I hear a whimper coming from Jack's room.

Silence.

Glancing at the alarm clock briefly to see 2:25am glaring back at me, I drift back to sleep.

Then, minutes later, his feet hit the floor. Little steps pad toward our bedroom. A small head appears in front of my groggy face. I reach out and pull Jack into our bed.

"Bob? Bob? Baby, Jack woke up. BOB??!?"
Snoring.

This happens just about every night.

It goes one of three ways after that:
1) Jack curls up and goes back to sleep, snuggling in our arms. Best case scenario here.
2) Jack stays awake for four hours - happy as a clam. It's party time, ladies and gentlemen!
3) Jack stays awake for four hours - inconsolable and screaming like a banshee.

What happened two nights ago? Yep, you guessed right. Number freakin' three. Bob took first watch and got kicked in the face, punched in the jaw and told off in toddler babble. If there were actual words spewing out of Jack's mouth, I'm sure Quentin Tarentino would blush. Dada was obviously starting to fume. So, Mama thought, "I'll swoop in and save the day with a lullaby and cuddle." Yeah, right.

me: Hey buddy! What's wrong...Mama's here.
J: AAAAH! BADAGA MADAFA! (throws body against his bedroom wall)
me: Oh my goodness. Come here. (starts singing)
J: (blood curdling scream) NO! BABA NAGANA!

Yes, I get three words into some calming James Taylor ditty, and I get slapped in the face. Bob scooped him up and took him downstairs. If we can't exorcise the demon, by golly, maybe The Fresh Beat Band or Blue's Clues can. I still hear the remnants of a scuffle downstairs, followed by a "Fine! Do what you want!" from Bob. I came downstairs the next morning to find Jack passed out on the couch with The Little Einsteins blasting off in their rocket in the background and Bob looking groggy after sleeping on the floor. Now, this is one night. Imagine three nights of this in a row. It happens...A LOT. It gives me a short fuse during daylight hours and causes me to meltdown and feel all sorts of crazy throughout the day. Not good. We do see #2 (Party Jack) the most, and honestly, he's my least favorite. The last thing we want to do is party at 3am, especially when Bob's alarm goes off at 4.

It's exhausting, maddening, infuriating at times, and a complete puzzle. I've read about sleeping problems related to autism on Internet forums, articles and books by this authority or that parent, but there's no clear explanation on why this happens and what can be done. We've bought a weighted blanket, tried diet alterations, temperature and light changes in the room, no naps during the daytime, various bedtime hour trials, bath/no bath, rocking in the swing before going upstairs...he's had an established bedtime routine since infancy.

I have no answers, friends. But this gave me some comfort and a little smile:
http://www.youtube.com/watch?v=SwwtO5viUDE

Regression. It Stinks.

The question we always get...when did you first notice?

Honestly, there were early signs. Jack always examined his toys to the point of obsession, prompting us to envision a future engineering career for him. He never liked simple pictures in books but would ponder over little, tiny details lost in intricate illustrations. I always beemed with pride when he pointed out something my eye failed to notice. My mother picked up that he like to spin around on his bottom quite a bit. He was a late crawler and walker, but he got there within the "typical" timeframe. Sometimes, he ignored us when we called his name, but he's two. Two year olds are ornery, right? Other than that, he was developing on course.

He participated in simple dramatic play, danced to a beat, brought and showed us toys of interest, spoke about 50 words and found joy and engagement in his surroundings and people. Then, he hit 18-20 months.

He started an obsession with spoons. If it was a spoon, it was a thrill. He would run around with them, hold them up to his face until he went cross-eyed and spun around in circles relentlessly with one in hand. Okay...strange, but kids dig strange things. We would go to the playground, and while the other children played together, climbing and sliding, our son would find a stick or leaf and walk around, staring at it intently. How Zen our son is, we thought.

Then, we started noticing a decrease in language. No new words. By 24 months, his fifty words fell to about five: guitar, moon, Dada, Mama and "ah" for all done. By 32 months, we rarely heard those words. He still babbles conversationally and occasionally, we hear a word, but it happens so quickly, we often wonder if we wished it into being. Now, we're looking at a Dynavox communication device to help him communicate his needs. Eye contact became more and more difficult to initiate and maintain.

He loved books. Still does, I suppose. I have pictures of him covered in books, bringing them to us to read, pointing to pictures, filling in the blanks when prompted, etc. They were precious to him. Now, all of his books are half-eaten. We've cut off the corners of most. And it's not just books, every day is a constant battle of keeping the wrong things out of his mouth..."Jack, that's not for eating" "Jack, no eat!" "Jack, that's yucky." The endless chiding and redirecting.

So, here we are. His spoon obsession transformed into a thang for guitars and stringed instruments. I can jive with that. We're lucky and blessed because Jack is a sucker for hugs and kisses, and we like to hand them out en masse. The communication gap is the most frustrating. I remember saying to Bob when Jack was a wee thing in onesies, "I can't wait to hear what is going to come out of this kid's mouth." And I'll admit, reading friend's Facebook posts with cute quotes from their kids and seeing youtube videos of little 3 year old boys retelling the Star Wars plot causes a surge of heartbreak. On the other hand, Jack is cool. He's our guy. He loves us. We know that deep down even if he can't say the words yet. Yet. He will though.

Some other day, I'll tell the story of his diagnosis. It's a doosie.

Forum to Vent

After seven months of unchecked emotions driving my husband (and myself) crazy, I realized that I needed a spot to expunge my worry, to challenge my fears, celebrate our victories and connect with a community. You see, my son, Jack got an autism diagnosis last November. Although some days I suit up in armor and plow through the hours seemingly unscathed, it's the quiet hours when my husband is working and my mind starts wandering that raw, debilitating sadness and anger filters its way through. And I'm exhausted. Something needs to change, or I'm going to lose my marbles.

Hello, my name is Rebecca. Mother of Jack. Wife of Bob. Singer, teacher and spokesmodel for anxiety. I'm a list maker...a girl attached to a calendar...someone who likes to have a plan and expects particular, rational results. Don't get me wrong, I enjoy the unexpected on occasion but not when it comes downs to the Big F - my family. Now, we walk aimlessly through a fog with no map, no flashlight, no tour guide...only our intuition - sorting through uncertain behavioral and biomedical therapies, waiting for uncertain results, heading toward an uncertain future. Nothing is certain except our love for our beautiful, happy son.

Trust me, folks, he is gorgeous. And happy. And smart. Here he is now...

Cute, right? He's an easy-going dude who loves books (even if he does bite off the corners), music, water play, technology and general tom foolery. He's overwhelmed by sensory processing issues and needs a lot of vestibular, tactile, oral, auditory and visual stimulation. His perfect day would be running around the house with his tiny electric guitar, spinning in his living room swing, visiting the local splash park, reading "The Cat in the Hat" eighty times and eating sweet potato fries for every meal. There are many things about him we "get" now that we didn't know pre-diagnosis, but man, what would it be like to step behind those eyes and run with those little legs to experience, first hand, how he unravels the world.

So, here it is. The beginning of our story. A journey through bumpy terrain. I'm hoping that this forum will provide some solace to our family and others traveling down a similar road.