EMERGENCY!

Another interesting week to document...

On Friday, we took Jack to Children's Hospital for a scheduled MRI appointment.  This scan and accompanying blood work should help our insurance company accept and cover his growth hormone treatments.  So, the alarm went off at 4:45am, and we packed a busy bag to entertain Jack because, let's face it...we knew we were going to be there for at least three hours.  At least.   The MRI went off without a hitch.  It was a little disconcerting to see Jack's tiny limp feet hanging out of the MRI scanner, but I focused on an ancient issue of  People Magazine and got through it without panicking. 

In recovery, we waited for Jack to rouse...and waited and waited.  While Jack slept, the doctor came in and told us that there were some concerns about his blood work - his red blood cell count was 7.1, with normal levels being around 11 for someone his age and size.  So, they were going to run more tests.  I immediately hopped online and read things like "anemia," "mineral deficiency"..."cancer".  Okay, okay...let's not get all freaked out by playing Internet doctor now.  Two hours later, Jack woke up unhappily, and the doctor returned to tell us that his white blood cell and platelet counts were also below normal.  They wanted to run more tests, so, they were admitting us to the ER.  At this point, we were already in the hospital for five hours.

The ER doc visited shortly after we got a room downstairs and point blank told us that at this point, they had no idea what was going on, but they were looking for signs of cancer, mainly leukemia.  WHAT?!?  So, we watched as he checked Jack's body for lymph nodes and waited another three hours for a chest x-ray and a hematologist to review his blood slides, not knowing what to think - trying not to think.

Well...nine hours, three blood tests, one MRI and two x-rays later, the doctor informed us that his blood slides looked great, and the hematologist saw nothing emerging or anything currently of concern.  Phew!  But really?  Did we need to go through all of that?  What would it be like to go to the hospital for a scheduled appointment and leave within a reasonable time without a scare, I wonder?

We got home and ordered some food, and that evening, my face started dripping.  The stress and lack of sleep opened me up to a fantastic head cold that immediately traveled to my chest.  Two ear infections and bronchitis for me, my men are now sick, and I've completed one round of antibiotics and still feel like crap.  I'm so behind on my work.  Ugh.

Our knight in shining armor!  With his protection and love, we'll persevere!

On a positive note, we've administered the growth hormone for over two weeks now.  We've noticed some improvements in eye contact and play.  He's pulling more toys of the shelves and exploring more intently and consistently.  He also seems to weigh 20 pounds more than before, but I think I'm just weak from illness.  ;)  School has had an amazing impact on him, and we're set to start wraparound services with a TSS in our home Mondays, Tuesdays and Thursdays from 9:30 until after noon.  Intense?  Yes, especially when combined with school and outpatient therapies, but it's much-needed help.  I hope we gel with the TSS.  That's my next worry.  ;)  I'll always worry.

She's BAAAAACK! - Part 1

Friends, the wait has been long.  Another catch-up entry needs to happen unfortunately, but I will be starting a blogfest from this point onward.  I promise.  No really.  Blogfest.  It's what's for dinner.  It's amazing how life makes those unexpected turns and puts you in a different frame of mind and moves you forward, for better or worse.  I'd like to think that we're moving forward in a positive sense, and here's my explanation why...

1.  GROWTH HORMONES
The test results came back, and Jack does indeed have a growth hormone deficiency.  This is also the cause of his random bouts of hypoglycemia.  So, that problem is solved!  I've been doing some research and found a study that looked at children with autism secreting low levels of GH.  They discovered consistent advancements in socialization and communication after the children had been administered GH injections for three to four months.  I also know a fellow teaching artist who gives his son GH injections, and he's seen a dramatic increase in focus and eye contact soon after the initial treatments.  So, these are all good things!  Here's the downside:  GH treatments are horribly expensive, and we've already gotten our first denial letter from the insurance company.  We have an advocate from the pharmaceutical company that will help us with the appeal process, and they put us on the interim program, which provides the hormone treatment free-of-cost until the insurance company caves.  Apparently, it's common for medical insurance providers to refuse this treatment right off the bat because it's considered experimental.  Hence, the MRI and additional blood work we're getting next week to push our case.  Long story short, we received our first shipment, and a nurse came this evening to show us how to give him the injections...DAILY injections, mind you.  We shall see, folks.  We shall see...

2.  SCHOOL DAYS
Jack is in his third week of school at the LEAP Preschool, and he loves it!   I'm overjoyed because I know he's getting his needs met those three hours/day:  therapies, socialization, play, etc.  Since I work with children and have this intense background in education/arts, I felt that I could do everything for Jack on my own, and when I couldn't live up to my expectations, the weight of failure and pressure to be "on" every moment of every day started to cripple me.   He's with professionals who are dedicated to working with children on the spectrum, and he heads excitedly to the door when he hears the phrase "go to school".  AND...I have three hours of "me time" every afternoon.  I didn't even know what to do with myself the first week.  My house is actually clean.  I'm getting lesson plans written and developing a new training.  I can even watch reruns of Desperate Housewives and have a mimosa, if I want.  Here's a recent article in the Pittsburgh Post-Gazette about Jack's school: 

http://www.post-gazette.com/pg/11255/1173585-114-0.stm

So, Jack's schedule just got extremely intense.  School M-F from 12:30-3:15.  W and F mornings, he's in therapy at Sensory Link  www.sensorylink.com , and soon, we'll have wraparound services, also from The Watson Institute, M, Tu and Th mornings.  All good things.  He'll have someone on his tail from 9am - 3:15 every weekday.  That's right, buddy.  You can't escape anymore.  ;)  We also received his Dynavox Maestro speech device last week, but it needs to be programmed to suit his particular communication needs.  www.dynavoxtech.com   Adding it to the to-do list...

3.  MY PROFESSIONAL LIFE
I'm a teaching artist for Gateway to the Arts, and this organization is affiliated with Wolftrap's Education Program for Early Learning (PreK mostly).  See link below for more information about the program:   http://www.wolftrap.org/Education/Institute_for_Early_Learning_Through_the_Arts.aspx
Well, my boss recently submitted my teacher training materials to Wolftrap's headquarters to be considered as a national presenter, and they liked what they saw!  So, I'm headed to DC in late November with fellow TA, Christina Farrell, to audition for their roster.  That means, I could be called upon to present anywhere in the US for a nice fee and travel expenses paid!  For someone who does not feel comfortable talking in front of adults, I'm a little flabbergasted by this!

Also, a child care center, The Alphabet Tree in Blawnox, decided to redesign their entire school curriculum based on my teacher training, STRETCH Your Storytime.  I'll be offering them professional development throughout the year and completing a 6-week residency with two classrooms.

Bob and I watched a documentary called "Autism - The Musical" a couple months ago, and it chronicles The Miracle Project, developed by Elaine Hall, that provides socialization opportunities for families of autism via the children writing/performing in a musical.  Dramatic play, music and movement are all used to help children on the spectrum socialize and express themselves, and the results are amazing!  I co-taught with the amazing visual artist, Alison Zapata, this summer, and we decided that we're going to launch a similar arts-based project for the Pittsburgh autism community!   Laurie Tarter, another teaching artist colleague and fabulous modern dancer, is joining our cause, and I've talked to several other amazing performers and musicians to volunteer their time.   So, this fall is all about grant writing and program development!  Maybe a launch next year?  My goal is to give parents an AFFORDABLE and accessible way to provide these experiences for their children because the arts motivate, inspire and surprise, right?  Plus, who can afford $300 for six music therapy sessions?  UGH!  That's the other option here in town. 

And there's more:  there's a possible part-time job opportunity on the horizon that might double my current salary in addition to Gateway and make things much, much easier on us financially.  I'll keep you posted!

Well, I think I wrote enough for five blogs here, but I thought I would at least get the ball rolling.  There's more to share.  I mean, it's been about six weeks since my last post!  Later, gators!

The Growth Hormone Test

Yesterday, we trudged back to Children's Hospital for Jack's Arginine/Insuline Tolerance test designed to check growth hormone levels.  This test stimulates the pituitary gland to produce growth hormones, and if the test proves that Jack does indeed have a growth hormone deficiency, this might be what's impacting his occasional bouts of hypoglycemia.  Somehow, it's all connected.  If I had an hour and a strong margarita in me, I might be able to make more sense of it all for you.  Alas, it's 7:30am, and I'm delirious and barely through my first cuppa joe.  So, bear with me, friends.

The test itself is about two and half hours long, during which they take 10 blood samples.  They hooked Jack up to an IV to make the dispensing of medicine and blood work go much easier.  Jack, who before this point was his happy-go-lucky self, saw the various IV gear and, I think, recognized it from an earlier hospital visit.  The incredulous look he threw at the nurse was classic.  He's a trooper though and managed to stay seated for the first hour of the test, happily playing with the iPad. 

Side note:  I would like to personally thank the creative team at Apple for inventing this marvelous piece of technology.  Not only is watching our little Jack navigate the iPad faster than an any savvy adult completely fascinating, but also it saves our tired butts during these grueling hospital visits.  From the bottom of my heart, I love you, Apple.  You rock.

At the top of the second hour, the nurse administered the insulin, which would dramatically drop his blood sugar level.  This is the scary bit.  Another nurse needed to be in the room to help monitor his behavior, just in case his levels dropped to life-threatening levels.  They had a charge of sugar water to surge into his IV, if that happened.  His blood sugar dropped to 16 (remember, anything below 70 is low), and the effects of hypoglycemia are sleepiness and irritability, among other things.  We needed to keep Jack awake for 7 minutes to get the next blood sample, which was horribly difficult.  He made this constant part-whine/part-scream that gutted me, and he desperately wanted to pass out - more than a lush after an all-night bender.  So, the nurse gave us ice chips to rub on his body to keep him alert.  He started shaking slightly and would fall asleep within seconds until the next ice cube hit his skin.  To say Jack hated us at this moment is an understatement.

Needless to say, we survived the ordeal.  Fifteen minutes later, Jack's blood sugar rose to normal levels after a cup of juice.  And, thank the dear lord, after falling asleep at 6:45pm, he slept through the night last night.  Yeah, we were up at 6am, but having a night of uninterrupted sleep is a gift!

We'll have the test results in about two weeks.  If he is growth hormone deficient, he'll need hormone injections several times/month, probably through puberty, that we'll learn how to administer here at home.  Those will help him physically develop at a typical pace.  I'll keep you posted when we get the news!

That's Just the Sadness Creepin' Up on You

You know, I started thinking that I was finally accepting Jack's diagnosis, and all of a sudden, I'm crying in Jack's bed, holding his tiny hand, after he fell asleep.  It was the little things today that eventually set me off.  His happy squeals at the pool, seeing his skinny body shiver in the cool breeze, dozing off to sleep in the car...

And back at home...I call his name over and over with no response.   Finally, I lightly restrain him to get his attention, turning his face toward mine as his eyes deliberately look past me.  I watch and puzzle over his enjoyment in the repetitive behaviors:  pushing the same button over and over to hear an interesting sound, spinning in his swing, chewing on toys and the iPad, the same nonsense babble spoken again and again, staring and flapping with excitement at his party store kazoo.

Frustrated with my inability to connect, I desperately ask, "Jack, can Mama play your kazoo?"  He stops and looks straight in my eyes, putting the cheap plastic instrument in my mouth and waiting until I play a quick song.  Then, he retrieves the kazoo, leaves the room and retreats back into Jack's world.  It was a little moment where he acknowledged me.  He heard me and chose to interact.  15 glorious seconds. 

Part of me is elated that I broke through, but then, I briefly think about what "could be" or "should have been" and grow sad.  After that, I feel guilty that I'm wishing things were different, which brings about more sadness (and a strong inclination to pour myself a glass of wine).  He's a beautiful, happy boy, but the difficulty, for me, lies in the regression.  Bob and I glimpsed the "could be"...we saw the personality develop, the keen interest in the world around him - we heard his words, and then, something cruel stripped that away, leaving us with a little boy struggling to make sense of our world and preferring to reside in his own.

I often think this will never be "okay" - that this sadness will permeate through each day, everyday and erupt without warning, like tonight.  When will acceptance come, I wonder?  How can I accept something that strangles my son's development and has no understandable cause and an uncertain future?  How can I parent a child and not feel secure about my decisions regarding his treatment?  What if we did something to cause this, or we're making things worse?  I know, I know, don't think that way, but honestly, it's difficult not to let this train of thought take over some days, especially when fatigue rears its ugly head.  This whole thing is just plain sad...a sad weight I feel will never truly lift.

Autism Party at the Mall

With a high temperature today of 95 and a heat index of 105, even with our a/c quickly working itself into  a sweat, our house reached a balmy 87.  Jack was whining.  Parents were whining. What's a miserable family to do?  Why, go to the mall!

We headed up McKnight Road to Ross Park Mall.  There is a kid's play area with slides and a carpet representing the Pittsburgh rivers that Jack likes to explore.  On a typical visit, he obsessively goes up and down, up and down, up and down one slide or crouches down to examine the large carpeted letters spelling out the three rivers.

It was 7:30pm when we arrived, and it was hopping.  There must have been 30 kids running amok and hanging off the play equipment while parents chilled on the sidelines, texting or deciding which store to hit up next. Jack, recognizing the joint, immediately gave us that gold medal smile and started excitedly babbling and gesturing emphatically with his arms. 

After removing his sandals (mall policy), we put him on the Ohio River portion of the carpet, and he was off.  While screeching and squealing, he managed to run the perimeter of the play area, successfully avoiding contact with any other child's body, or eyes for that matter.  It always amazes me to watch him navigate a crowded space, whether crowded with people or toys.  I never see him LOOK at what he so expertly avoids.  He just knows that there is something to evade.  Every once in a while, he'll approach one of the other parents and smile, which we always like to see.

Ten minutes later, Jack realized that there are too many bodies on the slides, making it difficult to do his typical up/down, up/down, up/down routine.  So, he started escaping the play area, barefoot, and running toward the outside doors.  Bob's after him, and Jack quickly cuts to the right and races, still barefoot, through the mall thoroughfare.  And let me tell you something, Jack is quick.  I'm hobbling after them, and finally catch Bob stuffing Jack's feet into his shoes near the escalators.  A mall cop, riding a Segway, chuckles and says to me, "It looks like you've got your hands full."  Yeah, buddy.  Sure.

Jack wanders around this area and discovers two leather benches pushed side-by-side with a grooved horizontal pattern that feels much like a gymnastics mat.  He shimmies his body up on the couch and starts commando crawling to the opposite end, peering over the side onto the floor.  Back and forth, back and forth, back and forth.  Once satisfied with that experience, he rubs his hands and arms across the grooves, smiling and babbling to himself.  Then, he log rolls across the couch, stopping only to examine the sky lights and beams above.  This full-out, unexpected sensory experience happily occupies about 15 minutes of our mall visit.

All of a sudden, he's off and running again.  He noticed an Abercrombie and Fitch sign outside the store and examined the letters closely, rubbing the back of his hand on the words to gather more information.  The boy loves his alphabet, and the mall is an excellent place to view letters of all sorts. 

Then, it was off to the escalators.  I needed to run and pick up a few things for a bachelorette party that I'm throwing tomorrow night for two lovely brides-to-be.  So, I left the boys to their escalator fun.  Bob told me that they must have ridden up/down, up/down, up/down about fifteen times.  When I returned, they were on a downward returning trip, Jack smiling ear-to-ear with Dada talking him through the "step off" portion of the experience.

Who knew the mall was this interesting?  Capital letters entice the eye!  Furniture built for a tumbling routine abounds!  Moving stairways to paradise (or the food court) take us to new heights!  Kid's playground?  Bah!  Who needs it?  Jack knows where the party truly is.

Time to Face the Music

Yeah, yeah, yeah...it's been some time. 

We're on another whirlwind:  summer school, singing, motherdom, weddings, etc.

I guess I'll start with summer school.  For monetary reasons alone, I opted to teach an arts curriculum for Pittsburgh Public School's Summer Dreamers Academy, a fancy title for summer school.  Aren't they clever?  Alison Zapata and I are co-teaching (thank the dear Lord) inner city first and second graders in an unairconditioned building, and it has been an eye-opening, completely draining experience.  First of all, the lack of communication between administration and teaching staff is mind-boggling, and secondly, I cannot believe how many 7-year-old gangsta thugs we have in the room.  Like father, like son?  I don't know...these are the kids that need us the most, and their need for attention manifests in MANY different ways.  I'm trying to hone my empathy as a calming tool when things go awry, but it's difficult.  I don't think the 95 degree and up temperatures in the school help much either.  Oh well...14 more days.

Singing.  WOO!  Well, Bob asked Dan and I to play a gig at Caribou next Wednesday, the 27th.  C'mon down!  I think we start around 6:30pm. We're doing our blues/soul set.  We're simultaneously prepping for a wedding gig and the cabaret I'm apparently debuting in Westmoreland county in late August.   Add to that some soloist work with the Eclectic Laboratory Chamber Orchestra on August 5th, and I suddenly feel like a honest-to-goodness working singer again.  And it feels great!  It's time for Dan and I to make some dough wailing on voice/guitar because dang, we rock, yo.  We just dilly-dally in the marketing, go-get-'em department.  The cabaret is coming together s-l-o-w-l-y (I still need to write it), but I'm stoked to have something under my belt that's completely mine.  It will all come together because it has to.  Yesterday, I mailed my application and dvd audition for the second season of "The Voice," too.  Why the heck not?  If I've got it, might as well flaunt it.  If nothing happens, then it's no skin off our backs - business as usual.  But if something does happen...well...let's just say karma owes us big time.

In Jack news, we decided to take him off the gluten/casein free diet for a spell.  After eight months, we have not seen any major benefits from this diet.  He had sleep issues both on/off the diet, never had any major gastrointestinal problems to begin with and some of his focus improvement might have more to do with age and behavioral therapy.  With his hypoglycemia issues, we feel that a healthy, well-fed boy is more important right now.  The diet is so restrictive and SO expensive, and it's benefits are still conjecture.  Many parents/doctors feel strongly about the benefits or lack there of for children with autism, and most research is inconclusive.  So far, it's hard to tell whether there's been any major change by adding gluten and dairy back in the mix. He's thrilled to have goldfish, ice cream and mac-n-cheese again.  He's been stimming a little bit more, but he's also going through another waking-up-in-the-middle-of-the-night phase, something that happened regularly even on the diet.  When he's exhausted, he tends to stim more, and yesterday, he konked out at 7:15pm.  He has two weeks to give his body a chance to adjust, and then, we'll decide.  I've read several autism websites that talk about adding digestive enzymes to the child's diet to help them process troublesome foods.  Many parents have had much success with their children on the spectrum taking these enzymes while keeping a regular diet.  That might be our next step.  If there are naysayers out there, disapproving of our decision...bite me.  We're doing the best we can.  AND he can go back on the GFCF diet at any time.

Other than that, it's wedding and shower time a-go-go.  We have five weddings to attend this summer and one friend having a baby.  So, every weekend from last week onward holds a new bridal/baby shower, bachelorette party or ceremony.  We're a little stressed about money and wanting to represent ourselves gift-wise, but you know, we'll do what we can.  Luckily, our friends mostly understand where we're at and what we can handle, but I still want to do something nice for them.  I have a few tricks up my sleeve yet.

Well, time to do the dishes and prepare for another sweaty afternoon in the classroom....

Tummy Obsession after Three Years

Jack discovered our bellies this week.  He's obsessed with them and takes any oppotunity to lift up our shirts and squish his face into our belly fat.  We do talk about our belly buttons a lot in this house, but I'm not sure what preciptated this new interest.  He likes to motorboat bellies now.  Hey, it's direct interaction with his parents, and however odd it may be, we'll run with it.  It could be worse...he could be motorboating elsewhere like a many a male. 

Jack turns THREE tomororow!  Crazy, right?  This year was a total blur, but when I look at him these days, I see a growing boy ready to start school in two months.  My baby is gone.  He's all legs and attitude now.  ;)  There's been some upset when people ask me what we're doing for Jack's birthday.  Our answer typically involves some stutters and "ummms" and ends with a "nothing much."  I don't see the need for a party at this point in the game.  Birthdays aren't really on Jack's radar yet, and I feel any to-do we would throw together would be more about us - not the clueless boy running around the house, clutching his kazoo.  We planned on getting him a special GFCF bakery treat at Glutteny and having him pick out a toy or two at Target to bring home.  The museum or a visit to the splash park might happen, too.  I think he'll dig that.  After a year at school, he'll gain some buddies to invite to a party next summer. 

In other news, today was our last day with in-home therapists.  When he turns three, his services shift, and he'll receive his therapy at school.  Honestly, for me, it's a relief.  He's been extremely ornery and unreceptive to the girls trying to work with him here, but he loves his OT at Sensory Link, the gym he visits in Gibsonia twice/week.  We're adding another day of OT and an additional hour of Speech Therapy there this month.  It'll be good for him to relax a little more at home and not have strangers trapsing through the house throughout the week, agitating and upsetting him. 

I don't believe that a forceful approach is key for autism therapy.  He does great work and shows progress when it's motivating and more on his terms, and since he's so young, I don't want Jack to associate what the therapists deem "play" (sitting him down to put shapes in a sorter, rings on a stacker, etc.) as the be-all/end-all way to socialize with an adult.  We have more meaningful interactions when following his lead and cues.  He can complete his task work at school and keep home as a safe, fun zone. 

Here's a trip down memory lane...Jack's first birthday:

I Really Can't Rock-n-Roll All Night

I closed my eyes around 12:45am last night.  45 minutes later, Jack woke up.  We were up, battling the sleep gods, until 5:15am.

I'm so tired.   Jack is wiped.   I'm sure over in Caribou Coffee Land, Bob drinks his 18th espresso shot.

Coffee poured is false hope.  A nap will not suffice.  My to-do list mocks me.

I proclaim today to be a bust.  National Delirium Day!   I intend to embrace and celebrate the pain.  If we can survive today, think of what other parental feats we can overcome tomorrow.  Fellow parents, time to rally and mold this exhaustion into delusions of awesomeness.  Hallucinations bring happiness.  For all you naysayers out there:  Look, your cat just vomited gold!  Watching "Team Umizoomi" everyday will award you a PhD in astrophysics!   You can build a robot out of cardboard boxes that cleans house, changes diapers and tap dances!  Nic Cage is the best actor ever!  (Oh wait, that last one we believe when we're alert).

Just sit back and let the exhaustion work FOR you.

Sleep is for sissies.  I prefer to lose my mental faculties and rock the unrest.  Bring it.

Time Flies...

Wow, time flies when your doing it up Bieber-style!  It's been a surprisingly busy week, so, this is more of an update entry, folks.

Here's a brief endocrine update for those not in the know:  the endocrine unit called with the results of Jack's blood work.  Apparently, they were testing his growth hormone levels throughout the night because these hormones raise blood sugar.  Since he's a little dude with low muscle tone, they hypothesize that maybe there's a connection there.  Of the three samples they took in the hospital, all were low.

BUT...in children, growth hormone levels fluctuate throughout the day.  So, they just might not have caught a peak.  We're heading back to Children's in the next week or so to do a controlled test where they will give him an arginine/insulin cocktail via IV and purposely lower his sugar levels to collect more blood samples.  Hey, not the best way to spend the morning, but answers are always welcome.

In other news:  Jack ran out of his special formula vitamin (high in the Bs), Super Nu Thera, while in the hospital.  Ever since we stopped dosing him, he started getting interested in his toys again and noticing people and sights around him.  We even heard a couple words and phrases like "swinging," "turn on," and "all done".  Our occupational therapist at Sensory Link told me that sometimes kids get acclimated to these supplements, and the progress you see initially slows.  Just stopping the vitamin changed Jack's brain chemistry enough to see some startling changes that I hope will continue!  We don't plan on giving him anything else until we see Dr. Faber at the Children's Institute.  Sure, we're on a year-long waiting list to see him, but we don't want to mess with his brain further without having a doctor to consult.

A couple days ago, we went to Squaw Run park and playground, and a little 2 year old named Henry, sporting a humongous fro, wanted to befriend Jack in the worst way.  He hugged Jack, held his hand around the playground and mimicked everything Jack did.  If Jack looked at a stick, Henry picked up a stick and stared at it.  When Jack threw the stick on the ground, Henry put his stick next to Jack's.  I have to say, Jack was wary but extremely curious about Henry and even tried to climb a ladder after Henry climbed a few rungs.  Seeing these little exchanges makes us so excited for Jack to start school on August 29th.  He's going to a great school for children with autism that's affiliated with The Watson Institute.  He'll be in a room with three other children with autism and 8 typical peers.  They will craft the curriculum around what motivates the children with autism in the room.  It's going to be wonderful for everyone.  Mama gets a break, Jack gets friends and a great learning opportunity, and we gain a place within a family community!

Today, we went to the spray park in Troy Hill (see pic above from an earlier visit) and plan to take Jack swimming tomorrow to beat the heat.  Our boy loves the water! Well, I think that's all from me tonight.  Bob and I plan to watch "The Social Network," and we need to squeeze that in before he starts snoozing.
ZZZZZZZzzzzzzzzz.

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.