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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 :)