Sunday, July 31, 2011

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.

Thursday, July 21, 2011

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.

Tuesday, July 19, 2011

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....

Thursday, July 7, 2011

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:

Monday, July 4, 2011

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.

Friday, July 1, 2011

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.