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Sunday, September 18, 2011

Life on the Fringe of Faith

I dedicate this blog entry to "Nanan" who is doing her job as "Da Godmutha".


San Roque Church
I have written before about our journey of faith with Finbar and the trials and tribulations that we have faced trying to find a church community that could, or rather would, accomodate a child that could not sit still or be quiet for 20 seconds.  This issue has marked my life so much at this point that I have resolved to form a foundation some day with the specific mission to support churches in including special needs children into their programs.  Sure, sometimes they try. But the road to, well you know, that "H" place, etc, etc. 

As previously written, I have been a bit PO'd with the Catholic church since Finbar's diagnosis.   Along the spectrum of church bodies, the Catholic church is the most rigid in my experience, in terms of its adherance to a strict way of practicing faith, and its incapacity to accomodate anything that does not fall within its very tight norm.  While I have found that many non-denominational and Protestant churches offer extensive children's programs and a wealth of fresh minded volunteers, few of the Catholic churches in town offer childcare during Mass.   Moreover, I have not heard of any that assist with helping special needs children attend services and make the sacraments.  Finally, most of the people serving in the Catholic church tend to be quite elderly.  While big hearted, they are not exactly equipped to deal with a special needs child in "Little Church".

So why do I write about this again?  Well, much to my surprise, something, actually TWO things,  I never deemed possible a year ago happened today on this "25th Sunday in Ordinary Time" (can anyone explain to me what this means exactly?).

Firstly, Finbar sat through much of a Catholic service and held it together without completely embarrassing us. And to boot, he even seemed to enjoy it, and dare I say, seemed pleased with himself that he was in "real church". 

Secondly, after this 1 hour service, he proceeded to attend First Communion class for another hour or more and did so without a single complaint or argument.

Hallelujah.  Miracles do happen. Long live the Pope :)

And now I must go to confession...

PS: Finbar and I made the made the front cover of the church bulletin this week.   Did I mention that miracles happen?

Monday, September 5, 2011

Will You Be My Friend?

About a year ago, I wrote a post entitled "I Live with Dory"  about the shortcomings of Finbar's short term memory and the ensuing insanity it drives me to.  Back then, I was living the life of Marlin from Finding Nemo, on his epic voyage with Dory who could remember nothing from minute to minute.  And I would tell myself to just keep swimming.  Over the last year, Finbar's short term memory lapses receded quite a bit, no doubt because of the Brain Integration Therapy he has been receiving.  Nevertheless, with all this improvement, I recently had a brief  "Dory" experience with him and it uncovered a long time nagging question of mine.  Why do children with autism have such poor short term memories?  In that Dory post, I also alluded to the fact that research has shown that there may be a link between Autism and Alzheimers - scary thought I know, to look at your 6 yr old as a mini-Alzheimer's patient. But that is how it feels sometimes.

Case in point (after a BBQ at our home with friends last night):

F:  (excitedly) "Hey Mom, Hey Mom?"
Me:  "Yes Finney?" 
F:  "Um, can we invite THAT girl over for a playdate tomorrow?"
Me:  "WHAT girl Finney?

I glance at Reese tromping down the steps from the upper patio in our yard where we had been eating, on her way out to go home, figuring he is referring to her. Knowing that he has been playing with this girl all evening and the evening before, and therfore should know her name, I endeavor as always to drive home a point.

Me:   (somewhat annoyingly) "You mean the girl in the yellow shirt?" Still not giving it away.
F:    "Yes, yes, THAT girl!  Can we have HER over for a playdate? Can we? I want her to be my friend."
Me:    "You mean REESE?", I say in a kind of "duh" reply, trying to make him realise that knowing people's names, particularly people that you have been hanging out with for four hours, is EXPECTED.  I instantaneously imagine him at a job interview when he is 25 having forgotten which job he is applying for and for what company, brush that nightmare thought aside, and momentarily take note that he chronically does not seem to care about learning a person's name.  Or, is it rather that his memory does not allow him to remember? Ah, the million dollar question.   Many people have the oft bad habit of  "being horrible with names" (yours truly included).  Which is it? Blatant social carelessness on his part? Or some brain malfunction?   Or, as many have dubbed autism to be - Alzheimers for kids?   I may never know, so I move on to the positive - OMG he is asking for a playdate with a new friend! OMG, OMG, OMG. 

Me:  "Well, yes! Why don't you go ask her if she'd like to come over sometime or ask her mom if it's OK?" (and please don't blow it)
F:  "But what if she doesn't want to be my friend?" 
Me:  (at a loss for an answer to that) "Well, go ask her to be your friend and invite her over (oooh could be awkward).  Hurry before she leaves!" (God, please let her want to be his friend)  

I lose track of him for a few minutes and then see him with Reese, who hasn't left yet.

Me:  "Hey Finbar, didn't you want to ask Reese something? Hey Reese, Finbar wanted to..."
F:  "I ALREADY DID mom and I asked her if she would be my friend (ooooh awkward) and she said yes and that she wanted to come over for a playdate..."
Me:  (cutting him off)  "Great! Reese, do you want to..."
Reese's mom:  "Hey Finbar, do you think that you would like to come over to OUR house one day to play?"
Me: (OMG, he is being invited by another mom for a playdate - A first!)
Finbar:  (doublechecking)  "Reese, you are my friend now, right?"
Reese: (shrugs her shoulders without glancing back at him)  "Uh, yeah, I guess so." (She runs off)

This Dory thing is socially awkward but who cares it is working out! We are on our way to P. Sherman 42 Wallaby Way, Sydney :)

Friday, August 26, 2011

Imagine

I am sitting on a sofa outside a studio music room listening to Finbar play drums - yes, that is right he is sitting at a full sized drumset tap tapping - along with his teacher, William, who is belting out John Lennon’s “Imagine” on the keyboard.  Just for effect I have included a link to the video for this song.  If you click it, as you watch John Lennon playing his white piano (and strangely, Yoko Ono opening shutters) listen for the drums and think of a 6 yr old playing along.   I’m a little teary eyed admittedly. The song always has that effect on me, but hearing Finbar play along, well, it will bring on the waterworks unless I fight it right now. 

After playing a good while, the music stops and I am knocked out of my reverie. The music is replaced by Finbar’s loud and enthusiastic, if too repetitive questions.  “How many times did I do it? Did I go through the whole song? How many times did I do it? Did I do it 100 times???”  As I type this, unsatisfied with his teachers vague answers, Finbar runs out of the room to tell me, but not before being reminded by his teacher to high five him.  He hollers in my face (he still does not quite get personal space, especially when excited) what I, sitting right outside the room,  already know.  I quickly wipe a tear and muster feigned surprise and wonder.   “Mom, mom! Guess what I did! I played  it over 200 times!”.   More high fives and then I tell him to go back and learn some more.  Time to learn a new beat his teacher says.  I could not be happier and I wish I could sit on this sofa all day long listening to him learn new beats.
It had always been suggested to me by numerous persons in the know that children with Autism and Aspergers do well learning piano (as a rule I make many "notes to self" when people suggest such things). This, for many reasons – the finger movements satisfies a need to “stim”, playing piano music is mathematical and rhythmically soothing for the brain, they can hyperfocus and have an unusual capacity to remember notes, sheet music and such.  (Some autism experts speculate that Mozart had Aspergers.)
So it was for this reason that a couple of months ago I brought Finbar to the Santa Barbara Music Youth Academy.  You may recall if you've been following this blog, that I have been searching a while for a meaningful activity for Finbar (Click here to read about that).    William, his drum teacher, attends our church where another mom of a special needs child suggested I try him out as a piano teacher, stating that he had a ton of patience.  Nerves on edge, but desperate to find Finbar an outlet for building confidence and interest in something,  I brought him in for an “assessment”.   In the end the assessment from William was “I have the patience to teach him. But I think he should start on drums.” Hm. Drums you say? But we have a piano at home...
I once wrote a post called "It Takes a Village" about all the kind-hearted willing people who have helped our family and Finbar along the way.  William falls into this category and so this Thanksgiving I will be thankful for HIM, a rare breed of teacher with a knack for meeting fringe kids like Finbar where they are in the moment.  William is a tall, cheery voiced, smiling, warm and quite talented African American who hails from a musical family.  The first thing he taught Finbar is “positive thinking only” and "take a deep breath" (why on earth have I not used these simple words of wisdom with Finbar before????).   His focus wasn't teaching drums, but teaching Finbar to learn.  This clearly worked.  Finbar reiterated the same motto to me at home on more than one occasion.  I am always amazed at how much I have to learn as a parent - “positive thinking”. 
The kid picked up playing quickly, so $350 later (not including the lessons) we are pregnant with a fine drumset and a hope and a prayer that Finbar’s enthusiasm and budding mentee relationship with William will churn out good value.   As I hear Finbar tell William many times while he is learning the new beat "OK, I’ll TRY MY BEST, William" I do feel like it is good value.

As I pull out of the parking lot after this lesson, I realise Finbar is quite tired and probably getting sick. I congratulate him again on doing his best. He responds "Mom, can I keep taking drum lessons until I get really good please? Because it will take a long long time for me to become a really good drummer. Can I please?" 

"Sure bud." I say, imagining he and his buddy Grace doing a drum duet at next year's school talent show (read my previous post about the school talent show). Imagining him belting out Def Leppard tunes when he is 10, me singing along...heck I may even buy him some of those round John Lennon spectacles...You may say I'm a dreamer, but I'm not the only one...

Tuesday, August 23, 2011

The Old Man and The Pee

It feels a bit odd, but certainly true to living on the fringe, that bedwetting would be the subject of my first entry in several months.  I actually started a blog entry on this subject on October 25, 2010, almost 10 months ago and just rediscovered it.   So for more than 10 months it has been an issue that we have been very affected by and I believe one that, because of my whispered confessions and conversations with parents of young kids on the fringe, bears open testimonial here.   As the website I will refer to later states "bedwetting is a common problem affecting an estimated 5 to 7 million children in the United States. Chances are, your child has a classmate, friend or teammate who wets the bed."

I shift in my seat at the use of the word "bedwetting". It is not a word that falls readily from a parent's lips when discussing their child, not like "straight As" or "team captain".   I have an easier time saying "my son has autism".  At least those words are usually met with sympathy and understanding.  But "bedwetting", well, you just don't utter it to another parent do you?  The word conjures up images of a traumatised kid who is having a temporary affliction due to a death in the family or a car accident. The hope is that he will get over it.  Or better yet, picture an 85 yr old man, bedridden and in diapers.  And in my worst thoughts it means that I as a parent have not done my job, that I have somehow been weak in potty training my son. These are the notions that I always held about bedwetting.   I have contemplated using the term "enuresis" when and if I ever mentioned what was going on, because it seemed less personal to Finbar (and myself as a parent) and more like a disease he was afflicted with.  But when a Huggies advertisement spurred me to investigate bedwetting, I realised that word fit the bill. You see, we had become regular customers of Huggies Goodnites and perhaps Huggies figured, as I had, that we had spent enough money with them and it was time to address our bedwetting issue.


The Huggies advert led me to a site called http://www.bedwettingstore.com/.  Once again I found myself, as I had with the topic of autism, pouring over information, possible causes, what works and doesn't work, possible therapies, etc, etc.  Testimonials from parents abounded. And as I read description after description of their bedwetting experiences, with a pit in my stomach I once again accepted that my son was not going to fall into the range of normal development, that is, when it came to nighttime dryness. His brain as I knew behaved differently. So it was no surprise that what I was reading told me that in this case his brain also behaved differently, and yes, it needed (more) therapy and training.  

Finbar's brain was not communicating with his bladder at night I learned.  Duh.  I knew this because we had tried everything in the past - limiting drinks, peeing before bed, waking him up to pee, rewards, punishments, reading books... Nothing worked.  But when Finbar started Kindergarten and became more socially aware, he began to express a desire, a need to be dry at night.  That was when I started this blog entry. Here we are 10 months later, and I can finally finish the entry, and thankfully so on a positive note.

Sometime in the beginning of this year, I finally purchased a "starter kit" wireless bedwetting alarm. Top O' the Line model.  Comes with 8 different alarm sounds...anything from a sinking submarine siren to a police car siren to the one we settled on because all the others were too terrifying to wake up to - some robotic dance song of sorts.  The technology is amazing. The alarm comes with real underwear that have a little velcro strap to attach/plug the receiver into the underwear, which itself contains miniscule wiring that detects the very first drop of pee thus setting the alarm off (and it really does).   Finbar (read me, the parent) must get out of bed to turn the alarm off and then go void.  I, as the parent are meant to help him get up if he doesn't wake to the alarm, change his waterproof pad and wired up underwear, reset the alarm, note the time and size of the pee accident, and this, night after night, week after week, month after month until his brain is trained. On average 3 months they said it would take, sometimes as long as 6 months. 

Well, I call myself the Sleep Nazi. This, because I could never bear to be up at night when my kids were babies and so I made sure that both babies were sleeping through the night by 5 months old.   My kids have never slept in my bed.  They do not get out of bed at night.  They rarely go to bed late.  I need my sleep and I have made that clear to them.  I said goodbye to the Sleep Nazi and bought the $250 Malem alarm system, resigned to make this torture session go as fast as possible.

Can I just say to any parent of a child 6yrs or older contemplating this issue to GET AN ALARM. IT WORKS.  Within two weeks Finbar was about 75% dry nights. After 4 weeks, we almost stopped the alarm, but then he had one accident, so we had to go another 2 weeks. Finally, during our recent vacation, he woke himself twice each night to pee, getting himself down from a bunk bed in the process.  It took 6 1/2 yrs to get here, but now the Sleep Nazi can once again sleep :)


Sunday, June 5, 2011

So You Think You Can Recite Poetry?

Jack and Jill 2 - WW Denslow - Project Gutenberg etext 18546.jpgA few weeks ago, there was a sign-up announcement at Finbar's school for the annual variety show.  An email from his Kindergarten teacher went around encouraging parents to have their children participate - that is, by sharing a talent such as singing a song or dancing, or playing an instrument. Something of that nature.  Finbar does none of these things so I was quick to rule him out without even consulting him.  Likewise, he was quick to rule out my opinion when he when he signed HIMSELF up without telling me: 

Name: Finbar (his print writing)
Talent: Poem

Not wanting to make him nervous and secretly being proud of him for having the kahunas to sign up, I let  a couple weeks go by until, a day or two before the show, I matter-of-factly asked Finbar if he had chosen a poem.  To which he quickly blurted in reply:   "Jack and Jill went up the hill to fetch a pail of water. Jack fell down and broke his crown and Jill came tumbling after."   Uhhh. Hmm.

Briefly panic stricken, I googled "Poems for Kids" and scanned the sites for more catchy subject material...poems about space, about school, comedic material.  "Ah to hell with it, let it be", I told myself. 

I was struck by two things in that moment:  1) Finbar has achieved a truly new level of self confidence in recent months  2)  I, in turn worry less about him and what he does and says and in turn get to enjoy what comes

I have mentioned before and will mention again, that I am attribute much of this change to his brain integration therapy and the fact that his school environment is a very healthy place for him to change and grow into his newfound confidence. 

The day of, I tried not to dwell on what was to come, and I did not really speak to Finbar about it.  I went to an early yoga class and almost did not make it to the show. As I ran into the school auditorium, hair still wet from my post-workout shower, I was greeted by Finbar's slightly panicky aide "Oh, thank God you're here. Did you get the message we left you?"  Uh, no I hadn't, but good thing for me we live  a block from school. "MOM YOU're HERE!!!" Finbar loudly blurted out for all to hear.  As heads turned to see who was causing such a stir,  "Phew, for better or worse" I thought, "yes I'm here, bud."

I cringed as I sat not too far from Finbar, who increasingly became anxious, loud and fidgety and behaved more and more inappropiately as they called one child after another up on stage to perform.  But my recent attitude shift toward Finbar ,which is "just let him be" kicked in, and so when he kept coming over to tell me that he did not want to go up on stage I told him he didn't have to. To which he would reply, "OK, I'm going to do it." After about 5 rounds of this, he was finally called up. To my amazement he went up on stage.  And to everyone's amazement he proceeded to shuffle to the back of the stage, keeping his back to the audience without so much as a peep.  And that is where he stood until Mr. Regan, the nice male teacher who was MCing, walked over and nicely offered Finbar the mic.  To which Finbar simply shook his head no.  This went on a few rounds until Mr. Regan began to coax Finbar into telling him the name of his poem (Finbar only would whisper it into his ear). Then Mr. Regan tried to get him to describe what jack and jill did. To which Finbar replied he would not say. At this point, the 5th and 6th graders in the audience are cheering him on "Go, go, go!".  Snickers and chuckles abound. "Oh dear God" I think, "please don't let them boo him off."  At the point at which Mr. Regan gestured to Finbar's teacher with his hands in the air mouthing "what do I do?", Finbar offered to whisper the poem.  And just like that, with a quick grab of the mic he whispered the quickest and quietest  Jack and Jill nursery rhyme anyone has ever heard.  More cheers and applause and he shuffles off the stage. Next.

Talent? oh yeah, the kid's got it.  I was guffawing at his stage presence and natural comedic timing with all his silent gesturing up there.  And I wasn't the only one. I was proud. And I think he was too.

Just in case though, I am currently looking around for a piano teacher for Finbar. I figure it can't hurt to have two talents next year :)

Sunday, May 22, 2011

The BIT is Back

Well, it took another round of Brain Integration Therapy (see a few previous posts on this) to inspire me out of my grief-driven absence from blogging.  To recap, my dad died in February, and since then I have found it virtually impossible to put emotions of any kind, especially related to Finbar and his autism, down on paper. And while I have started blog entries several times over the last two months and not finished them, a recent round of Brain Integration Therapy (BIT) has positively affected Finbar in ways that have allowed me some space to breath, lift my spirits, reflect - and blog.

I find myself thankful once again, for the simple gesture of a mom, another mom of a child with special needs, a gesture that is changing my life for the better.  Raising children to be good kids is a moving target. It feels like sand shifting beneath your feet.  Raising a child with special needs is a target moving at lightning speed and sand that shifts constantly - you never seem to be able to stop chasing that target or get your footing for more than a second. You never get a break from thinking about and trying things that will move your child and  your own life closer to normal.  This mom friend lived that way for the past 6 years with her son, and knew that I did too.  This friend, who was really just an acquaintance a few years ago, was the one who encouraged me to try Vitamin B-12 shots, even meeting me in a parking lot a few years ago to hand me some of her numbing cream that helped Finbar not feel the prick of the B-12 shot in his butt.  That in itself was a life changing gesture.  "Best bang for your buck" she told me.  After B-12 shots, Finbar began to notice and take an interest in other children for the first time. And it only cost me a few hundred dollars. Thanks friend :)

Shortly thereafter, my friend moved to Boulder, CO with her son who is a year older than Finbar and who also has major sensory, social and anxiety issues like Finbar.    Last summer, when I was out in Boulder doing the Sensory Learning Center, I met up with her and she, being noticeably changed in a more centered and optimistic way, shared with me the impact that BIT had on her son, her life and their well being.  I will never forget sitting across the table from her at Starbucks, jaw wide open in amazement,  as she went on and on describing the various problems that were disappearing from her and her son's life thanks to BIT. As she described one gain after another, she was so relaxed and hopeful and knowingly positive that her life was going to continue to get much easier after years of, well, hell raising a child with social and emotional issues.  I yearned to feel that hopeful and relaxed.  Could that really happen to me, to Finbar, to my family?  She urged me to try BIT, saying that she was in the process of being trained to be a BIT practitioner so she could help other moms like me.

So Finbar did one round of BIT last August.  Because of my friend's recommendation, a BIT practitioner squeezed Finbar in and we drove back from our vacation in the Grand Canyon to Boulder to do the therapy.  Immediately my husband and I noticed that Finbar was a different kid.

So then another round of BIT occurred in November (see a previous post).  After both sessions we saw subtle/gradual and some immediate progress, mainly on the social and emotional side.  Finbar now wanted to make friends and was willing to take social and emotional risks to do so. This was a big, awkward step for him, as it would be for any child with autism. There were also many physical/well-being gains. And one big dose of confidence and independence.

However, after the second round of BIT Finbar had also developed verbal and physical tics to a very worrying degree. These continued for a few months and had begun to subside right about the time that my father died. But after my father's death, Finbar became very unravelled for a couple of weeks and the tics and autistic traits intensified.  Not only was I devastated by my father's death, I was hopeless about Finbar's improvement.    Finally when he seemed somewhat stablised, my friend called to check in and to say that she and another practitioner would be coming to Santa Barbara and wanted to offer more BIT to Finbar.  Desperate, I gladly took her up on the offer.  Here is how the results of this last round of BIT went down:

Get rid of verbal and physical tics:    check
Have consistently dry pants at night:   check
Calm down the nervous system and social anxiety:    check
Ride a two wheel bike immediately:     check
Increased focus:      check
Bonus improvements not asked for:  long snuggles and increased hugs for mommy and even little brother Declan.  New and deeper friendships at school.  Long phone conversations with crazy Aunt Zanny (he even declared her to be his camping partner on our upcoming trip to Disneyworld).  Singing solo at a school performance and signing up to try out for the school talent show (reciting a poem).  Scolds me if I try to dress him myself or buckle up his car seat.  He eats spinach on his pizza.  He loves to write spontaneously and he write me and other people notes and letters constantly.  He asked to go to soccer camp (he detested soccer before).  He can now sit through a movie and take it all in.   And best of all he apologizes immediately and frequently for any "old" Finbar behavior, that is the socio-emotional behavior of a 3 or 4 yr old, which just a few months ago was the norm.
Dr. Balbinder, Finbar's favored  BIT practitioner

Most of all, what BIT has done for Finbar is to allow the veil of his autistic traits to begin to come down and his true character to show. And what a character he is. And he likes to flaunt it!  Yesterday as we were walking back home from school, a group of very cute 5th grade girls started yelling and waving, "hey, there's finbar!! Hey Finbar!! (wave wave)". Whaaaat?  My son  is popular with the older girls?  According the the school principal with whom I had just spoken, the older girls at school think he is hilariously funny.  They are right. He IS, now that he is not lost in the world of stimming and social dysfunction.  And he now likes to play up the older brother character.  Tonite he called me from his grandmother's house to calmly inform me that Declan was having a tantrum and not behaving for Grandma, so he suggested that I  drive over quickly and bring his toothbrush so that Declan will stop tantrumming.

Today we were invited over to "M"s house for dinner.  "M" who is a girl in Finbar's class, is Finbar's one true friend.  He adores her and with good reason. She is very smart, very pretty and very sweet and she appreciates Finbar's humor and wit. What more could one ask for in a daughter in law?  As I watched Finbar and "M" play some version of soccer or rugby, not sure which, and "M" lifted my son up in the air (his suggestion) cheering him on after scoring a goal I thought, my my we have come a long way in just a few short weeks.  My son has a friend, a wanna-be girlfriend and is playing soccer with her! 3 months ago coming off the plane from my dad's funeral, I thought we would have to medicate him to get through life with our sanity intact.

So next weekend Finbar is getting another round of BIT.  I'm hoping out of this round that perhaps his "executive functioning" a.k.a.  organisation and planning skills improve.  This so that I don't have to sound like a broken record player that I have become.  "Finbar, it's time for bed. Go take off your clothes and get into the tub. I SAID take off your clothes and get into the tub.  IF YOU DON'T get into the tub now you will have no bedtime stories...WHAT did i just tell you???"

And with all this progress, I have decided to undergo a "bit" of BIT myself next weekend.  You see, the theoretical premise of BIT is that brain imbalances that result in abnormal behavior are caused by trauma and stress.  Parts of the brain shut down to cope.  As my friend pointed out, we moms of special needs kids are traumatised and stressed. We live in a constant state of red alert and hypervigilance. YES I DO LIVE THAT WAY I thought as she said this.  So we need a bit of rebalancing ourselves she suggested. You can say THAT again.  My brain has indeed shut down to cope. I'd like my short term memory back PRONTO.  Look for a personal account of BIT after Memorial Day :)

Tuesday, March 8, 2011

Requiem for Paw Paw

My Dad, who is known to Finbar and his brother as the hero "Paw Paw Ralph" is dead.  To say that this sucks, is an understatement.  Dad was only 63. He was the rock in my life and Finbar's biggest fan, worrying constantly about Finbar's well being, sending me autism information regularly, calling Finbar on Sundays for long chats, always pointing out cool mechanical toys that he thought Finbar would like...always trying to help and support him through personal contact.

I was about to blog about Finbar's Valentine's experience, his new love, his cards from girls, his lost teeth...and then on Feb 15 I got a call from my brother saying that my Dad had a boat accident and didn't make it.  And just like that - if you will refer back to my previous blog post describing my journey with God- God sent not 400 men, but about 400,000 men to test my faith once again. 

But this blog is not about my faith in God. It is about Finbar, and my life with him. Only fitting then, that I should relate how this experience has impacted Finbar.   In order to do so, I need to back up and describe my father's relationship to and experiences with Finney.  To say that these were "deep" or " very close" is not accurate enough.  "Kindred spirits" perhaps is a better description of their relationship. It certainly is a description of my own relationship with Dad and, Finbar being a mirror of myself, mirrored that relationship with his grandfather, even at such a young age.  They were truly connected.

My first memory of Dad with Finbar is Dad holding Finbar, a newborn, swaddled on his crossed leg. Rubbing his forehead to make him fall asleep. Such peace, such joy in my Dad, and Finbar too.  During that same visit Dad taught me how to help Finbar help himself to fall asleep.  Little did I know that I would use that same advice time and time again with both my kids. What a hero. What a Dad. What a grandfather. What a gift!

Fast forward  3 1/2 years and Dad, knowing that Finbar has been diagnosed with autism, is anxious about a visit from Finbar and I to his house in New Orleans.  Dad worries that Finbar will not be able to relate to him and worries whether he (Dad) will know "what to do".  I hope that Finbar will "connect" wtih my Dad somehow, so few are his connections wtih people at this point. And I really want Finbar to KNOW my Dad.  But my Dad is irresistible to me, and my intuition tells me that it will be the same for Finbar.  Upon meeting my dad, now as a preschooler, Finbar doesn't miss a beat. Hugs and squeezes abound during that visit. Finbar is chatty with Dad. He hangs out constantly with Dad on his Lazy Boy.  He falls in love with Dad's boat. He wants Dad to teach him to fish. My Dad is his sportsman's paradise idol. So many things to do and learn from Paw PAw.  He connects with my Dad's super warm, hands on, soft-hearted self. Finbar is devastated when we have to go home to Santa Barbara. And for the first time in his life, he talks to me and others about shared experiences and past memories - with his Paw Paw Ralph.

A second trip to New Orleans followed a year later...with a side trip to Walt Disney World, camping in Fort Wilderness in Dad's new motorhome.  FUN. I still remember the awe watching Finbar guffaw with Dad over the Hoop Dee Do Revue show like they were two old pals.  Another new and unexpected reaction from Finbar.  And my Dad was soooo patient with Finbar. I learned from watching him.   After this visit, Paw Paw has now risen to rock star status with Finbar.  His influence on Finbar is magical.  I am amazed at how eager to please my Dad Finbar is, so much so that his usual autistic rigidity fades away when with my Dad.  

So when a few months later, my husband Bill was set to go out of town for almost two weeks, on a whim, i decided to visit Dad again with the boys just for fun, rationalising "he could be dead tomorrow".    I just wanted my boys to be with Dad and know him, especially Finbar.    Finbar caught his first fish during that trip off Dad's dock. In Finbar's mind, he would be returning one day to live with Paw Paw so they could fish together. After this particular trip, Finbar begins to worry about Paw Paw Ralph living alone and hopes he is not sad. He wants to visit Paw Paw more often and he talks about it a lot. Sympathy for another, a rare thing for Finbar at this point.

Using the same rationale that "he could be dead tomorrow", in July 2010, we planned another adventure with the boys.    Dad drove out 3 days in his motorhome to meet us in Colorado where we were doing sensory  integration therapy for Finbar.   From there, we drove through Wyoming and spent time in Yellowstone, Jackson Hole, then beelined it down to the Grand Canyon on a whim. We then decided to go back to Boulder, CO last minute because an opportunity for Finbar to do brain integration therapy arose.  I hugged Dad tight as we stood on the side of the road in the middle of nowhere. He heading to the Durango, Colorado area to visit a friend, the same friend that would be with him in his last moments on the fishing boat, we carrying on to Boulder. I still remember how warm he felt and the pit in my stomach as we hugged and parted ways.  That is the last time that I saw him.

He and my boys had become such a family unit on that 3 week trip together.  And afterward I would hear from people about how my kids talked about Paw Paw Ralph, the legend.  So it was with this same spirit that again, on a whim, earlier this year Dad and I (with much urging from my boys) planned another trip to New Orleans and then to Walt Disney World. He could be dead tomorrow I told my husband again as I booked the plane tickets - besides Finbar was insisting on visiting Dad after school let out.  Little did I know.  Finbar was glad that Paw Paw would not be lonely if we visited. He wanted to go visit Dad right away. I wish we had.

I think the hardest thing for Finbar and myself to come to terms with is that we will no longer travel and have adventures with my Dad.  The finality of that is hard to bear.    I saw the difficulty in accepting this on Finbar's face when he realized that we would not be going to Disney World in the motorhome again.

When I told Finbar about my Dad's death, he first went into "autistic" mode. I wasn't sure if he had heard or paid attention. He started rambling.   He was even kind of laughing.  Then, I got hold of him, he snapped out of it, and the questions and complaints came..."Where on his head did he get bumped? Where did he land? Did his digestive system stop working? Could we build a machine to bring him back? How do you know that he is really dead?  Why did you tell me this...I wish you never had? I hate feeling this way and I will feel like this forever...I am mad. No, I am sad. Well actually, I am mad and sad. "

We caught a flight a day later to New Orleans and stayed a week while I organised with my siblings a funeral.  To say that week was hard on Finbar does not begin to describe his trauma during that time.  On the plane out, I nearly had a serious break down and vowed to medicate Finbar upon our return to Santa Barbara.  He was crazy and out of control.  But I knew he was processing Dad's death when he randomly asked me mid- sentence on the plane "Does he still have his bones?" and then carried on as if nothing was wrong.   And another time in the hotel "can we just bring his brain back"?

Seeing Finbar's reaction that week was agonizing.  His verbal and phsycial tics, which had been subsiding came back full force.   His only respite from his anxiety was when he was safe in the hotel room in his own world, or with his beloved Auntie Sheila, his Godmother and my best friend. She too is his kindred spirit. He feels safe with her.  He went to my Dad's house twice and was visibly uncomfortable being there, asking numerous times if he could go back to the hotel.  All the while, my 5 nieces and nephews all younger than Finbar appeared to be coping as well as could be expected.  My siblings did not seem terribly worried about their kids. Ugh. Another fringe experience as I fretted and vented to my siblings about Finbar's particular coping issues.  I felt like the ridiculously worried parent or that somehow I was making my own child's pain and sorrow to be more important than the others'.   I longed for him to just play and get on with things as his brother and cousins were doing.  But he never really did.

As soon as we got on the plane back to Santa Barbara, Finbar was a markedly changed person.  More mature, more willing and flexible, more respectful, more helpful, kinder and less temperamental. He has remained that way to date.  Is it a coincidence? Or has the depth of this experience and loss somehow "gotten through" to him?  is it Dad doing his guardian angel bit from above? Whatever it is, it is THE silver lining in all this.  Finbar now says "yes, mom" and "I'm sorry" regularly.

I, to say the least, am also a changed person. Especially with respect to Finbar and the fringe.  Bye bye supplements, bye bye reading every email article on autism. Bye Bye worrying about a cure, his progress, or what people think. Bye bye pity party.  I have found a level of peace with Finbar's challenges that was not there before Dad's death.  My priorities are not to spend my time fixing Finbar or avoiding his issues, but rather to embrace him unconditionally and with respect in the moments I have with him on Earth.  We snuggle a lot more, we talk deeply, we look each other in the eye and have understanding. Thanks Paw Paw, you have taught me and him well.

Finbar being wiser than his years and so attached to my Dad, I suspect will process and grieve not too differently from myself. But with less crying and drama. He still talks about Paw Paw regularly. Asks if he is an angel or a saint.  I am grateful that my faith before this was restored to a point where I had educated Finbar about heaven, eternal life through Jesus, etc.  He is able to reference this belief system, and find some comfort in talking about it.  However, he still insists that he does not want to go to Heaven. He wants to stay here on Earth. Good.

Monday, January 31, 2011

A Thousand Hail Marys (this entry is long)

Our Lady of Prompt Succor Hasten to Help Us
I distinctly remember my first night at home with Finbar when he was a newborn.  I was camping out in a separate bedroom with him, mattress on the floor, Bill snoring peacefully in the room next door. When Finbar awoke in the middle of the night and would not go back to sleep, I put on some Bach, cried from fatigue and began to pray umpteen Hail Marys for strength. At some point I must have fallen asleep, "Hail Mary full of Grace" hanging off my tongue, slumped over sitting up. I awoke to Finbar having rolled out of my arms and fallen asleep somewhere in the blankets, still breathing, thank God. I thanked God that we had both survived the night.  That began my new journey with God, as a parent, as someone who would finally unselfishly make sacrifices for the well-being of another.  Gone was the me, me, me mentality, praying always for what I wanted and needed.  Having a child  made me realise what a miracle life itself is, and that there can only be a greater Power who has created this miracle.  I felt closer to God that night, thanks to Finbar. I thanked Mother Mary for watching over us.  I would continue to repeat this prayer nightly, for several years.

Being raised Catholic, with a particular devotion to the Virgin Mary, I continued to pray Hail Marys and sometimes rosaries almost every night in the months that followed.  A thousand Hail Marys, I always thought I must have prayed in those first few years of Finbar's life. The repetition of prayer was soothing and gave me hope as I ended many days with my head on the pillow tired, confused or upset from the day to day learning curve of being a new parent.  When would it get easier? I wondered. I prayed almost daily that it would.

At some point after Finbar was diagnosed, I realised that I had been praying so much because my life as a new parent was in fact a notch or two more stressful than others'.  I was not, as I often felt, crazy for stressing out about my infant child and then praying for relief from this stress at the end of my days.  There in fact WAS something not normal with my child and his relationship to me and others, and I had been feeling the stress of knowing that in my gut but not being able to explain it to anyone. Prayer was one of the only ways of relieving it. It was my source of strength and peace.

Sadly, as Finbar's situation worsened and with the new pressures of having a second baby who also had developmental problems, my once prayerful relationship with God and the Virgin Mary gradually turned to one of silent blasphemy and anger.  I would start to pray at night and then figure, "what's the point?"  I would lash out at God, "why am I being punished?"  I prayed to Mary to help me to be a better mother, to be more patient , more wise with my children, and that made me resentful because it seemed my prayers were never answered.  Crazy as it seems, in classic biblical style, my trials and tribulations with Finbar caused me to turn away from God and I became increasingly fearful of Him, fearing that I was being somehow punished for some past sins or tested for some unknown reason.  I thought, "I am being punished for not going to church every Sunday, or not doing enough charity work, for being too selfish, too mean to my husband, for not reading the Bible enough.."  I searched for reasons.

Bill and I had tried attending several churches over the years - Catholic, Presbyterian, Episcopal, Assemblies of God.....none felt like home, so we never kept it up.  Then when I tried to take Finbar to our parish Catholic church only to be let down by the Sunday school, I felt that God had abandoned my son, so I abandoned my faith in Him.

But God speaks to those who listen and pray, even if they are angry and lost.  And despite being angry, I did continue to pray at times, and eventually began to seek a closer relationship with Him again. I was desperate to be saved from my grief and pain in dealing with the loss of the dream of the perfect child.  And at some point, He sent me little messages and signs that He was still there.  A fish would die and so I would have to explain God and Heaven to Finbar, not an easy accomplishment given his incessant question asking.  I once had to throw a crazy nanny out of my home while Bill was out of town, and it was a scary confrontation. I was afraid she would come back to the house and I was alone with the kids.  I prayed and minutes later my father-in-law a true man of faith, showed up at my door. He had no reason to be there at that moment. He then provided comfort and advice to me for handling the situation.  His words and presence in that scary moment seemed God inspired and brought me peace. There were many other signs, but eventually, after several similar invitations had come my way, one of Finbar's special ed teachers invited us to attend her church.  She offered to help Finbar out in the Sunday School.  How ironic that Finbar's special needs should lead us back to church I thought.  How could we not try it?

I thought that once I made up my mind to go back to church, that God would take care of the rest and make it easy.  I guess that was not his plan for me.  It was not easy to go back to church on a regular basis with the entire family.  At first, even Bill was not very enthusiastic about attending.  He had grown used to having Sundays for projects and for catching up on work.  The Sunday School teachers, while very willing to work with Finbar, were a bit anxious.  It was difficult for him to be in such a structured environment with a group of kids who had grown up in the church and knew each other and the Lord God very well.  We attended this church nearly weekly, trying to meet new people, hoping for a consistent Sunday School aide to appear, praying Finbar would adjust.  But while surrounded by so many young Christian families, it seemed nearly impossible to connect with any of them. No matter how I sliced and diced it, the fact that Finbar was not friends with any of their children was going to always hinder our progress in making friendships in this very nice but somewhat clicky church.  It wasn't anybody's fault, we were just, once again, on the fringe. 

During this time, we were looking at Kindergarten options for Finbar. I became convinced that it would be best if Finbar were schooled in a Christian environment with caring nurturing teachers who emphasized character and Christian ways, and who I trusted would be more tolerant of his differences. But with each visit to the many Christian private schools it became more apparent that if Finbar could barely cope in the Sunday School environment, with 15 devoutly Christian raised boys and girls and a Christian teacher, he certainly would not be able to handle the behavioral expectations of attending one of these schools with those same boys and girls.  Ah the fringe. It was heartbreaking to accept.  And even God it seemed could do nothing about it. I cried and cried and prayed and prayed.

Nevertheless, my faith and trust in God had been growing and I knew and believed and trusted that His plan for Finbar would emerge.  And it did. After going through many iterations and agonizing over his Kindergarten placement decision, one day, I just became peaceful and decided that our local elementary school would be the right place for him. He wanted to go there. He asked to go there. What bigger sign did I need really?  I knew that my commitment to raising my children in faith was now there, so Finbar would receive that Christian nurturing in a church somewhere, somehow.  I took a leap of faith.

And it has worked out. His experiences there thusfar, while not always easy, have far exceeded my hopes.  He is doing very well. He likes his school. He wants to go. He doesn't complain. His teacher is kind and caring,  as are the staff who support him. And they behave the same toward me.  I am finding the positive attitude in Finbar's school that I thought I would only find at the Christian schools. Upon reflection, I am now not even sure that he or I would have been met with the same support at any of those schools.  So perhaps God was watching out for us after all.  For it has been my experience that Christians, like any faith, can behave as a sort of  "club".   For some groups, you are either a Believer and behave as such 24/7 or you are not a true member of the church.  Well, we live on the fringe. We don't, we can't, belong to any clubs by nature of our situation.

So after a long vacation last summer, we decided not to return to the church we had been attending. It just did not feel right for us, especially for Finbar.  Going to church and finding fellowship with others simply should not have to be so hard. I knew that if God wanted us attending church somewhere that he would show us.  Long story short, out of the blue, a former preschool teacher of Finbar's offered to go to Sunday school with him. This was right as Kindergarten was starting.  I took this opportunity to attend a new church that I had been wanting to try.  Turns out that this church's Sunday School has "bible bucks" that the kids can earn for things like bringing their bibles, doing bible homework, etc. They can then purchase trinkets at the church when Sunday School is over. 'Nuf said. That was just the trick needed for Finbar to get motivated to behave and work at Sunday school. He can't wait to go each Sunday and earn his bucks. The Sunday School staff were only too welcoming, one teacher even insisted I attend the service even though we did not have an aide for Finbar that day.  God bless her for taking Finney on, I know that he was not easy that day for her.

It is difficult to describe the comfort one feels when finding a church that feels peaceful and accepting, not club-like.  Come as you are. Bring your child with autism, we'll do what we can for you.  That is what we needed and that is what we have found in this church and its teachings.  I hang onto every word from the Pastor. And God speaks to me through him. And He is healing me, week by week with His Word. And He is healing my son's spirit too. "I am going to live forever because I believe in Jesus Christ", Finbar says.  In Finbar's black and white world, it is written (in the Bible), therefore it is.

Esau greets Jacob with 400 men and open arms
And now I get to my real point I guess for writing.  A few Sundays ago, I was prompted to blog about this entire journey of faith by a particular Bible passage that our Pastor preached on. It is Genesis 32: 4-22.  It is the story of how Jacob and Esau, two brothers and sons of Isaac made peace with each other. In short, Jacob had deceived his father and received from him a special blessing meant for Esau. Fearful of Esau's revenge, Jacob fled far away for the better part of his life. Miserable the whole time away, and never once trusting in or turning to God for help, finally one day Jacob gives in and prays to God for the first time because he wants to go home as God has commanded him to do "...save me, I pray from the hand of my brother Esau."  For Esau was sending 400 men to meet Jacob.  Even though Jacob prayed to God for help, he still insisted on taking matters into his own hands, sending ahead three sets of slaves with gifts and offerings for Esau, hoping to appease his once angry brother and not trusting that the Lord would save him. 

The message was that sometimes when we are angry and distant with God like Jacob, and do not accept his plans for us, He needs to send the fear of  400 men into our hearts in order for us to get down on our knees and pray and trust that He will save us. And even then, we still contiue to insist on trying to fix things ourselves as Jacob did, rather than trusting in His promise to us.  I realised that with Finbar, I had been like Jacob. Angry and turning away, not trusting. And even when I prayed to be saved from my fears, I still tried to handle and fix it all myself.  Finally, I realise, and with this passage He was telling me, I cannot fix it all myself.  But it is OK, because God will.

I am sure that had I read this passage any other time, it would have simply been another biblical account in the long chain of them. But that day in church I knew that God was speaking to me of my journey with Finbar and what it meant for my ever growing faith in Him and in myself.  This passage also directed me to Psalm 34:19 "The Lord is close to the brokenhearted, saves those whose spirit is crushed.". Perhaps I had to have my selfish, inward turning spirit crushed to be saved from myself.  All I know is that God is with me, on the fringe, on the roller coaster, and yes, in those Christian clubs.

Tuesday, January 18, 2011

The Roller Coaster of Autism

This is a pretty good semblance of the autism roller coaster. The loops make you feel a little crazy and disoriented.

The heavy and dense scaffolding is a great analogy for the amount of work and energy it takes to climb uphill when dealing with autism.
I have been on this journey for 5 years and I still haven't grown comfortable riding the roller coaster of autism with my son.  I've been hanging on while climbing the hills, getting to the top bursting with excitement at Finbar's progress, with him next to me and both of us grinning ear to ear, relishing the view from the top - only to then realize that what goes up must go down and that we are heading very fast toward the bottom and it looks like we are going to soon hit hard ground.  Fear takes over and I cling to Finney.  But then, just as we are about to crash, back uphill we go, or, we take a wild unexpected turn.   Sometimes I get to the point where I think that it's fun to go round and round, up and down, scared and enjoying the rush simultaneously; but sometimes I wish that I could just get off and be done with the ride. Just go buy Finney an ice cream and find myself a nice bench to sit on for a while.  I suppose that this is not too different an analogy than what basic child-rearing of neurotypical kids feels like to many. I just think that the hills are the biggest, the falls the fastest and the turns most furious on the autism child-rearing roller coaster. The autism roller coaster also has a lot of backwards upside down loops too :0  The kind that make you nervous and leave you a bit disoriented after you do them.

So what brings me to this analogy?  Well, just days after Finbar's fabulous turning 6 parties that brought along several days of more mature behavior (see previous post for an account of the view from the top of the roller coaster), we are headed downhill once again and I feel myself lifting off my seat, clinging to the safety bar for dear life and I don't like it.  We started going downhill when we took Finbar skiing at a local mountain over the holidays.  We've taken Finbar skiing about four times now, and we cling to the idea and satisfaction that skiing is truly an activity which both motivates and regulates Finbar.  Therefore we have decided to make it a priority each year to make several ski trips with him in the hopes of instilling all the confidence, motivation and fun that comes with learning a lifetime sport. 

  Alas, I should have known.  Going skiing to a place we had never been before during peak holiday season is not the ideal environment for Finbar to ski or vacation in.  I mean I absolutely shun big crowds, always have, for vacations. Why would I expect my autistic sensory overloaded child to like it?  Suffice to say that once again I was reminded that "environment" is key to success for Finbar. And putting him in an overpacked, understaffed, unorganised ski school is NOT, I repeat NOT, the environment for him.  In my optimism about his good attitude of late, I set him and us up for failure, ignoring my instincts and putting him into a group lesson on one of the busiest days of the week. I mean, "duh Jen".  I did not know whether to laugh or cry as we watched from afar as Finbar berated his ski coach over and over again for not taking him on the chairlift immediately. He kept pointing at the chairlift and yelling at the guy.   He has skied from the chairlift the last few lessons that he had. There was no way in his mind that he is doing a "magic carpet" again.  Bill and I walked away, clinging to my cell phone which we just new would ring any minute with the ski school saying "please come pick him up and take your money back".  I sucked down a beer at the overcrowded bar and tried to relax.  Well, the long and short of it is that he made it through the lesson.  When I asked him how it went, he said that he liked it but not the coach.  When I pressed him why not, his reply was, "Uh, I don't wanna say. Because then we'll get into a long conversation about it, so I don't wanna talk about it."  OK I can read between the lines.  'Nuf said, I thought, consoling myself that he had at least made it through the entire 3 hour lesson.
Finbar heading straight toward a kid, fully expecting this kid to move.
  The next day, Bill decided to ski with Finbar and see if he could make progress. It was painful. Finbar skied well, but it was painful for Bill, so out of sorts was Finbar the entire day, yelling and barking at Bill the entire time.  So much for father-son quality time.  Then the 3rd day we went sledding. Us, and some 1,000 Los Angeles residents went sledding together (the ski mountain is close to LA).  Well, did I mention that Finbar does not do well in crowds LOL?  After chewing  out about 25 people for getting in his way and two time-out trips back to the car, we packed it up and drove back to Santa Barbara, a bit beaten down, and I, anxious about the start of school and what that would look like with him behaving this way. Fearful of hitting the ground.
  
"Uh, can you move PULEEZ?? Hey, why aren't you listening to me?!? MOVE!!
 The first week back to school Finbar was near perfect - whaaaa?? Then I remembered "environment" is key. School is structured, predictable, comfortable, familiar. Negotiating space on an unknown sledding hill with hundreds of people - not comfortable and familiar. We were heading up the hill again :)

So when during this week of calm, I was reminded by a mom friend that Finbar was invited to her daughter's kids-only birthday party (this is the mom of "K" in previous blogs) I felt a little unsure, but mostly confident and hopeful that Finbar could behave on his own at this party. After all, he had been an angel at school that week and he was well, "6".

When I picked him up from the party I asked the Dad how it went.  I was met with a little hesitation on his part and so I proffered in a hopeful but heart sinking way, "mixed reviews?".  "Yeah uh, well he had a little trouble.....he peed in our backyard."   (OK Jen, keep it together).  "Oh, God, sorry. Uh, he does that sometimes, can blame his dad for that heh heh (sorry Bill I didn't know what to say, ugh)....Did he know where the bathroom was? I told him to make sure he knew where the bathroom was before he came over".   To which the Dad replied "yeah, he knew where it was. The thing is that he peed right by the tent, like practically on it".   (OK, now I can go home and slit my wrists).  "Oh, OK, I'll have to talk to him about it...Thanks for taking him on anyway. heh heh."   Silence. 

Wow, that was a pretty fast loop de loop :0

Then we had a birthday party this week for my father-in-law's 75th birthday.  It is never easy to plan family gatherings in a way that works with Finbar's issues.  And because he very often behaves near normal around family, it is hard to convince them that he has real issues when it comes to events like this.  This particular event, against my instinct and volition, occurred on a school night.  I just had a feeling that this would not be a good thing for Finney.  The party got him particularly amped up after a fairly calm week.  He was difficult to get to bed, even though it was late. He ate chocolate cake and ice cream. I big diet no-no, but I caved.  I braced myself with the roller coaster safety bar as I left him thrashing himself to sleep in his room that night, hoping the morning would ring in peacefully. 

The walk to school the next day was fine.  After school, he freaked out and we took another wild unexpected turn on the roller coaster. Verbal tics, little screams and outbursts nearly every minute.  Lots of very loud talking. Non-responsive to questions and statements. Anger. VERY AUTISTIC BEHAVIOR.  At one point he just collapsed in tears crying out "I hate my life, you people are crazy, this life is crazy, I hate this place, I hate this family. I am going to go away and move somewhere else".  Uh, did he just hit the ground hard cuz it feels like I did!?!  That night (last night) his babysitter told me that he was making those verbal utterances constantly while she put him to bed. She left his room and listened at the door. She said he was doing that until he finally fell asleep. It's been several days and still the tics.  He says he can't control them.


The roller coaster.  I don't remember buying a ticket to this ride, can we get off now??? Finbar needs a non-dairy ice cream...

Sunday, January 9, 2011

The Six Series

Finbar turned 6 on December 28.  I can't believe he is SIX. Gone are the preschool days and kiddie ways.  He is "elementary school aged".  Only fitting that I should recap and comment on the birthday festivities and his reaction to turning 6. All done in true quirky Finbar fashion.
Digital 6, Regular 6, Digital 6

3+3 = 6, even if it is written backwards

The day started with the amazing and amusing "Six Series".  When Finbar woke up on Dec. 28, he, unprompted in any way, proceeded to draw 6 works of art on the roll paper on his art easel. All were variations on the theme of "six".  My favorite was a drawing of 3 sixes in a row - a "digital six", a "regular six" and another "digital six".  The digital sixes were of course made with straight lines as you would see on a digital clock.  Digital numbers and clocks are a smaller obsession of Finbar's.  He loves to do math with the time ("in one more minute it will be 7:01, that's seven O one") and reverse the numbers when telling time ("it is now eight-O-seven...just kidding it's really seven-O-eight).    Another drawing was of  "3+3" (circled) = 6.  The threes were reverse written and so it took a few minutes to figure it out.  And a third which I really liked were a bunch of sixes drawn inside of one another - it looked like those spirals used to hypnotize people.  When he had finished he proudly called me over to announce that he had done a "six series" and took me through each one.What is so pleasing to me is that, if you have been reading this blog, you will know that art, writing and drawing have never been Finbar's forte. This is changing evidently with the introduction of the easel and inspiring subjects, such as turning 6, which prompt him to express himself.

And that is how his 6th birthday began, just a few hours before his long-in-the-planning birthday party started. Finbar in previous birthday years had little interest in inviting other children to his birthday party, much less remembering their names. After several years of strained birthday party planning on my part, and finally last year not even planning one for him (sadly, Finbar had not been invited to a single preschool birthday party as he had no friends), this year was nothing short of a birthday blast - a Zodo's bowling blast.  For once, Finbar seemed to have a clear idea of the NAMES of the kids he wanted to invite and the list of birthday party invitees was too long, or at least longer than my budget allowed. But then I thought of the puny cupcake party at the park I threw together for him last year at the last minute (at the urging of sympathetic mom friends) and decided the sky's the limit. My boy has FRIENDS (at least HE thinks they are his friends)! And he KNOWS THEIR NAMES.  And he has FAVORITE PEOPLE that he wants to bowl with ("G" and "K"). He even invited a BOY to go bowling with him a couple of weeks before his birthday and expressed excitement at inviting this boy , whom he had previously ignored for 3 years of playgroup dates and whose name he could never remember, to his party.  PROGRESS. SOCIAL PROGRESS FINALLY.

Finbar's cake topper looked like this
Most exciting for Finbar though, was the fact that he would get a real bowling pin from Zodo's for all his friends to sign, which they did.  A true souvenir of his first meaningful peer relationships and a significant social milestone for him.  And as such, I got really excited about planning the party.  Finbar decided that his cake should be a space theme. No problem.  I went on ebay and ordered a space shuttle edible icing cake topper that said "Happy 6th Birthday Captain Finbar".  I then scoured the internet for weeks searching for goody bag items such as space shuttle erasers, rocket ship pencils, and sticker solar systems.  I made some "outta sight" goody bags. By the time the event was over, 14 kids, plus Finbar's Irish second cousins and aunts/uncles and a handful of parents had bowled, eaten gluten free dairy free chocolate cake (no one knew that it was GF/DF made by yours truly) and I had in my enthusiasm purchased about $30 worth of arcade tokens to hand out to all the kiddos who were high on sugar and trinket collecting and enjoying the freedom of the bowling alley environment without parental supervision.  Finbar even felt comfortable enough to ask his friends to sing his Happy Birthday song a special way that he preferred, which they did. The kids had a blast and so did I.  Finney had only one momentary meltdown, a true record for him at a 3 hour group event.  I honestly don't know how I will top it next year.


That evening, a second GF/DF chocolate cake, this time topped with a figurine man bowling, was served up to close family at home.  Finbar took it all and stride and remained regulated for the most part. 

Turning 6 has flipped an unexpected light switch on in Finbar.  I guess in his black and white world, being six versus 5 is significant and now that he turned six, certain things should happen in his mind. I suppose I had been unknowingly reinforcing this in his head every time I said "When you turn 6, I will not help you get dressed anymore" or "when your turn six you will have to (fill in the blank)".     The importance of turning six to Finney was perhaps best demonstrated in his comment to his teacher upon returning to school, "Finally, I am no longer an ODD number, I am FINALLY an even number".   So suddenly he goes poop and wipes his butt in requested privacy.  Suddenly he makes his own pink lemonade, even getting a step stool to reach the cups he wants - "now that I am six I can make my own drinks".  Suddenly he is keen to dress himself (without argument) "because that is what you do when you are six".  And the list of things he will do now that he is six seems to grow every week.    Tonight for example, after a rough, hyperactive entrance to the pizza restaurant, Finbar sat at the table, quietly and without prompting colored the menu that they give kids, mostly coloring in the lines, played the games on the kids menu, watched the movie on the wide screen tv above when he was done with that, and calmly sat, waited for and then ate his entire meal.  He even accepted without argument that he could not have root beer.

 Whaaaaat???  If this is what the first few days of being six looks like, bring on the rest of this year! So long back-talking, tantrum throwing, angry, irritable, argumentative 5 yr old. Helllooooo Six Series :)

Sunday, January 2, 2011

Defending Pluto (again)

Pluto and its moon Charon
There is in fact an organisation dedicated to saving Pluto's planetary status. I am thinking of ordering Finbar a t-shirt off their website.
I mean to get round to summing up the holidays and their impact (yikes) w/r/t Finbar.  However, I must first record here an update (see previous postings on Pluto) on planet  Pluto's (make that "dwarf planet") stark defense by a certain future astronaut named Finbar.  I am convinced that Finbar is convinced that he can truly save Pluto and restore it's planetary status, for he talks about it with regularity.  I have visions of him sitting out in the middle of the desert when he is 35yrs old with the world's largest telescope, steadfastly plotting every speck of Pluto that might restore its status. I see him going to Washington D.C. to lobby on its behalf - no doubt his current skills at NOT taking "no" for an answer will serve him well.  I am pleased and amused that he feels so strongly and passionately about something, as very few things truly motivate him to act. 

This morning at 6:55am Finbar came in my bed to inform me, rather to ask me to guess, what he dreamed last night.   One eye open, I mumbled a guess and not being able to contain himself with the good news, he proudly and loudly announced that he had rescued Pluto in his dream.  He had gone out to the "tiny blue planet" and brought it back to Earth because it fits inside of earth. He then made some reference to the two planets being cozy and then he informed me that Earth and Pluto were the only planets with one moon, so it was OK to bring it to Earth (I am still searching for exact rationale in that explanation).   As I listened to him relate his feelings about the whole experience, which were so real and rewarding to him, I realised that he truly views this planet as a friend, an ally, to be protected and cared for. 

Later in the morning as he was relating his dream to his brother Declan, he was inspired again. First he came to me with a pencil gray rendition of "Ploodo", as he wrote it,  and it's moon, and asked me to guess what it was. When I guessed correctly by "sounding out" the name, he marched over to the art easel that crazy Aunt Zanny sent him for Christmas (more on that later), rolled down some paper and drew "Pluto in the Night". The scene included a very small sun ("teeny tiny because it is so far away") and a bunch of other twinkling stars drawn using a pretty blue pastel crayon. All the while going on about dwarf planets, moons, etc. I marvelled at this perfect storm of learning and expression. It is what teachers and textbooks on teaching refer to - you can excite a child to learn (and in this case teach others) if you combine a subject about which they are passionate with an outlet to express themselves and their knowledge. 

Clearly if you have been following this blog you would know that all things outerspace and of the universe, particularly the defenseless underdog dwarf planet Pluto, are of great importance to Finbar.  If you just take this instance, he did several things which, taught as separate skills, are hard to extract from him:

- creative yet accurate drawing
- phonetic spelling
- teaching others about science
- taking a stance and arguing a case (for Pluto's inclusion as a planet)
- empathy and caring (for Pluto)

For his recent birthday, Finbar received 2 sets of model space figurines, you know, the little plastic figurines that come in a long plastic tube. There were various versions of astronaut suits, rockets, space stations, satellites, capsules, etc.  When he got those I thought, well nice, but he has little imagination and so hardly ever takes inanimate objects like that and creates a story to play with them a la Fisher Price Little People.

Spaceship One has already made one successful test flight a few months ago
Well, add to the list today another check on the learning chart - imaginative play, yes, using those space figurines. The whole Pluto thing inspired him and as I type he still is flying from planet to planet around the house in his spacecraft. And when today he saw in his Big Book of Spacecraft (which, being inspired he pulled out to read) the photo of the man (Burt Rutan) who invented the replacement rocket ship for the space shuttle (Finbar is deeply affected and concerned about the retirement of the Space Shuttle program), he plainly stated that it wasn't fair that THAT man got to invent the new rocket because he, Finbar, had intended on doing so. Then he paused and said, "oh yeah, I forgot, I have to go to school and learn and blah blah blah first in order to do that.".  To which I pointed out that this man had become a test pilot and learned to design aircraft.  Finbar said that he could do that later on in life. I like instilling goals like this in my son at every opportunity I get.

To those with ordinary children who play imaginatively all the time (like my second son) and by age 6 are quite self entertaining (unlike Finbar), playing with pirate ships, legos, and figurines, this little story may seem banal.  But for the parent of a child who has trouble self entertaining with toys in a creative, imaginative and productive way, this is progress.  I really must try and must make sure that his teachers try, to reach and educate Finbar in ways that are meaningful to him.  What a challenge, but what a fascinating challenge it will be.