Life on the Fringe

Life on the Fringe of Faith

noreply@blogger.com (finbarsmom) — Mon, 19 Sep 2011 05:34:00 +0000

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?

Will You Be My Friend?

noreply@blogger.com (finbarsmom) — Mon, 05 Sep 2011 16:35:00 +0000

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 :)

Imagine

noreply@blogger.com (finbarsmom) — Sat, 27 Aug 2011 04:17:00 +0000

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...

The Old Man and The Pee

noreply@blogger.com (finbarsmom) — Wed, 24 Aug 2011 05:29:00 +0000

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 :)

So You Think You Can Recite Poetry?

noreply@blogger.com (finbarsmom) — Mon, 06 Jun 2011 04:51:00 +0000

A 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 :)

The BIT is Back

noreply@blogger.com (finbarsmom) — Mon, 23 May 2011 06:03:00 +0000

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 :)

Requiem for Paw Paw

noreply@blogger.com (finbarsmom) — Wed, 09 Mar 2011 06:15:00 +0000

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.

A Thousand Hail Marys (this entry is long)

noreply@blogger.com (finbarsmom) — Tue, 01 Feb 2011 04:43:00 +0000

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.

The Roller Coaster of Autism

noreply@blogger.com (finbarsmom) — Wed, 19 Jan 2011 05:47:00 +0000

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...

The Six Series

noreply@blogger.com (finbarsmom) — Mon, 10 Jan 2011 03:34:00 +0000

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 :)

Defending Pluto (again)

noreply@blogger.com (finbarsmom) — Sun, 02 Jan 2011 23:21:00 +0000

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.

On Hope and The Cost of Hope

noreply@blogger.com (finbarsmom) — Wed, 22 Dec 2010 18:14:00 +0000

I wanted and still intend to post a cheery entry for this Christmas season. It will likely be about Finbar's reaction to the entire holiday season of events....

However, at the end of the year, I always feel a bit torn in two. On the one hand, I absolutely love spoiling my kids, no matter how bad they've been (get that from my Dad), for both their birthdays, which are in December, AND Christmas. For me, this is the time of year that I take stock of what they have, am grateful that they still enjoy 90% of it active boys that they are, and think hard about getting some things that would be useful to their development and enjoyment and which keep the dream of Santa alive. And I just feel like no matter what the price, if they really really want something appropriate and meaningful, then it is worth it.

This year for example, after watching Polar Express again, tears in their eyes, my boys asked for a Polar Express train. This being 7 days before Christmas on a weekend. Off to Ebay I ran. Found it of course - for a price. I could kick myself for overpaying to get it expedited to the house in time for Santa to deliver it, but I can't put a price on my sons' faces when they open it and BELIEVE that Santa got their request and delivered. And I will say, that Polar Express is one out of only a handful of movies that Finbar will actually watch. And it is because it is such a moving emotional film. So it is worth it to me. Now I just hope that Ebay seller makes good on his promise of a Dec 24th delivery :0

On the other hand, I always end the year with a sinking feeling in the pit of my stomach. The feeling that I have spent too much (and not given enough to church and charity) and drained too many resources for the coming year all in the name of "Joy". This year, like many I suppose, I am particularly preoccupied with this feeling of overspending. And I am resentful. Yes, I admit it, illogical as it may seem, resentful. Putting aside the many families in the world less fortunate than we, those struggling with children whose upbringing and health is costing much more than ours, I am PO'd by the amount of money we spend every year on HOPE. That is to say, in the HOPE of recovering our son and stabilizing his physical and emotional health over the long term. I have to remind myself that this is a marathon, not a sprint. That we make educated choices about when and where to spend on Finbar and that every year is different. We are lucky we have the money to spend.

Nevertheless, the total bills associated with therapies, doctors, meds, supplements, this year amounted to well over $10,000, not even counting the hoards of overpriced organic, non preserved food from Whole Paycheck, or the thousands we pay in health insurance premiums or things like the numerous hours of ski lessons at Mammoth Mountain with the special needs organization known as ARC. I know that many of these expenses are privileges that we choose to use, but...they all contribute to the well being of my son.

I used to work with the organization called Talk About Curing Autism (TACA). http://www.tacanow.org/. Their tagline is "There is Hope. Recovery is Possible." I do agree a la Jenny McCarthy with this optimistic statement. Many disagree stating that children with autism need to be cherished for the gifts they bring and do not need to be "fixed". I agree with both schools of thought and I do not think they are mutually exclusive. You can HOPE to bring your child closer to a state of normalcy, where they can cope with and be happy in the real world (particularly once you are no longer around to care for them). And you can take any steps necessary to do so, often in spite of cost, as we do. However, if you blindly pursue that vision and miss what is in front of you in the meantime, then you have lost the plot that is your child with autism. Here is an excerpt from the TACA website about what I call Hope....

*******************

Where Are We All Going?

We are trying to achieve our children’s true potential with the final destination unknown. Our children are not a diagnosis; they are children with a promising future AND we will never give up.
Always looking for new resources to add to the puzzle picture. The goal is often recovery, but if not achievable, keep the back-pocket goal of increased independence.
You did not sign up for the autism journey, but you are here. Remember that redisposition/diagnosis does not mean a pre-determination of the future
Although you are now on a different path; it may be the most gratifying journey you have ever been on and for the best cause of your life.

*******************************************

So I do buy into the scenario that recovery is possible, but I tell myself that I do not want Finbar to fully "recover", whatever that means. I do not want him to be normal. Normal is boring. I am not normal and I like myself that way. To me normal is doing what 90% of the people around you do, like a herd of sheep. "baaaa, let's put our kids in soccer". "bbaaaaa, let's dress our 5 yr old girl like Lindsay Lohan" "bbaaaa let's give our 10 yr old a cell phone" "bbaaa my son must become a lawyer or doctor".....There is a movie I have been meaning to watch. Filmed by a teenager with autism, called "Normal People Scare Me". There is truth in that title.

Nevertheless, back to Hope, one hopes that their child can make one or two close friends in life. One hopes that they can develop a diverse enough palate for healthy, nutritional food so that you can go to a variety of restaurants for fun. One hopes that a child will develop and pursue an interest or hobby that may even earn them money someday. One hopes that a child can jump, run, kick and throw a ball with the rest of 'em for fun and games. One hopes that their extremely bright child does not have a learning difference or attention problem that hinders learning in a classroom environment with peers. One hopes for a lot in a child. And I am only 6 yrs into this.

I think of a mother I know a little, whose girl, same age as Finbar, has been diagnosed with a terminal brain stem tumor. Sometimes I read her blog, but seeing entry after entry with no hope of recovery other than a miracle from God above (and I believe miracles can and do happen) I wonder in my own little world what I am hoping for for Finbar exactly. Shouldn't I be satisfied? And why are we spending all this money that we could be spending on everything from toys to vacations to college to retirement on hope? I mean at least he doesn't have cancer!

And with all this universal health care talk (ironically under the guise of "Hope"), why doesn't the government pay for our medical costs for Finbar? The numbers are staggering, the studies are out there. Don't the statistics on autism speak for themselves? What more does the government need to help families out? Sure there are programs in place, but they are lacking and with budgets being cut as I type. As at this year end, I submitted $3000 in occupational therapy bills that were then rejected by my health care provider, and then saw our premiums rise by 30% for no real reason except Obamacare, I was PO'd at the world, at Blue Cross, at Obama, and everyone in between. How much longer can my family afford to pay the price of hope?

Here is a little run down of extra costs embedded in that hope:

Organic strawberries - $2/lb extra per week
Gluten free bread - $7 per loaf vs. $3 for regular bread
Coconut milk kefir - $6 per bottle vs. $3 for regular kefir
Vitamin B12 shots - $50 per month
Chelation - $150 per session, every 2 weeks
DAN! doctor visit - $150-$300, 3-5 times a year
Occupational therapy - $160/hr, one hour a week
Therapeutic riding - $50/hr, one hour a week
Bottle of cod liver oil - $30 per month
Brain Integration Therapy - $1500 x 2, not including flights, transport and lodging and meals
Privately paid behaviorist (because the gvt. sponsored programs don't work for our family) - $15/hr, 10 hrs a week
and on and on and on

I feel sorry for families that can't afford all this, as it truly helps my son. I feel sorry for the kids that don't get the nutrition they need to focus in the classroom, because mom and dad can't buy premium non preserved non processed foods. I feel sorry for the kids whose parents can't participate in behavioral programs with their child because they have to work all day all week to make ends meet. I feel sorry for those who don't have health care - cleaning up their child's gut and metals toxicity isn't even in the ballpark for them . So in my resentment, I am grateful. Grateful to God above for providing. Providing more than many have. Providing hope. And I will continue to hold out hope for my son.

In the meantime as I am typing this, Finbar has come to me and asked me if I added Hide and Seek Jo Jo to his list for Santa. I affirm this. However, I have already sought it out online and being a Walmart exclusive and heavily advertised gift this year, they are sold out. Oh well, hopefully the excitement over Polar Express will help him forget the one that Santa didn't deliver :0

Poop on the Butt is a Good Thing

noreply@blogger.com (finbarsmom) — Fri, 17 Dec 2010 07:09:00 +0000

(Warning: The following entry my be a little bit graphic for some, but it is a fact of life)

One territory that I think the majority of parents never dare to compare notes on, unless your child is advanced in this area, is when and how a child becomes fully potty trained - butt-wiping, pants (un)buttoning, night-time dry pants and all. The whole kit and kaboodle. Completely done with any bathroom assistance day or night. Parents of girls may say right now "what's the big deal?" I sometimes think that I will still be wiping butts when I am 62 and they won't be my grandkids'.

The only parents who tend to share their experiences about potty training are the ones who are struggling and therefore, to whom I open up. I find this is a common reaction no matter what the topic. That is a gift of Finbar's autism. It forces me to open up to others and share for example, the mysteries surrounding my son's potty usage, which provides comfort to myself and often other parents. Still pooping and peeing is a particularly sensitive area and it seems the majority of parents just muck along, sometimes feeling clueless and not in control, but embarrassed to admit it.

With Finbar, I had three strikes against me already when it came to potty training: 1) he is my first child so I have no experience 2) he is a boy 3) he has autism (read anxiety, control issues and sensory issues to be specific).

So to make a long story short, we got through pee pee training during the day by way of the autism behaviorists and school personnel pushing it (THANK YOU). Phew. Pooping on the potty was a much longer drama, but I, finally at my wit's end last year, forbid anything BUT pooping in the potty on the day Finbar turned 5. After holding it in for a week after his 5th birthday, Grandma was able to convince Finbar (did I mention that Finbar will do ANYTHING, even temporarily feign complete and utter normalcy for his Grandma?) to go and we were off to the races with pooping in the potty.

Nevertheless, here we are nearly a year into pooping on the potty and until last week Finbar was 1) not going poop without me or his father in the bathroom with him 2) not wiping himself (yuck).

This was just a battle I was not willing to fight right now.

The irony is that my 3 yr old is adamant about going poop "in pWivate" AND much to my dismay secretly goes poop and tries to wipe himself, only to call me in to fix his mess after he has "twied and twied" to wipe himself. Put it to you this way, I have gone through umpteen mops and boxes of Clorox wipes due to this boy.

Anyhoo, I simply chose not to push Finbar to learn to wipe himself. I encouraged it when I could, but that was as far as it went. So imagine my surprise when here, sitting at my PC last week, Finbar arrives at my desk, pants around his ankles, to calmly and sweetly announce that he went poop and tried to wipe, but needs me to check if any poop is still on his butt - as if he had been doing this for ages. At which point he turns around to show me. Well suffice to say that he needed a little more practice :0.

Whhhaaaa? I think. Where did this come from? For the previous 2 poops, he had in fact quietly gone on his own without asking us to go in the bathroom with him, but he did call us to wipe him. THAT was already surprising and I did not hold out hope that it would last. I didn't even really praise him for this because I was afraid that calling attention to it would cause him to regress. But WIPING himself was a whole new world. A BIG step forward. A world of Finbar trying to do something for himself on his own without whining for help or saying "I CAAAAAN'T. A check mark on the Independent Life Skills list.

This kind of self motivation comes so natural and is so innate to most kids, such as my 3 yr old. It's "look at me mom!" "Look what I can do by myself!". But for the child with autism, motivation is always lacking, always fleeting. As I have said before, people with autism have very little resilience.

So I told Finney there was a little more to get off. Cleaned him up. A couple of days later, he went and wiped and didn't even ask for a check over. I never did get the chance before he got in the tub to check how well he did :0. Then today I think, wow, when was the last time he went poop? 3 or 4 days ago? The answer is, I really don't know. I ask him and he doesn't know (doesn't remember - see post on Dory) but thinks that it has been a long time. Now what????

Speaking of poo, all is not exactly tied up with peeing. Ever heard of Malem bedwetting alarms? Finbar still wears nightime diapers. This breaks my heart. He so really really wants to have dry pants at night. We have tried EVERYTHING. Very well meaning folks suggest "don't let him drink after 6pm". If it were only that simple. Finbar's brain as we all know works differently and his sensory system works differently. I am only just beginning to grasp that we may be looking at a longer term, enuresis problem.

As I type, I just went to try and wake him (it is 10:30pm) as per his request every night when going to bed - "mom, don't forget to wake me to pee later." I prod and call to him, but he doesn't wake. What's a mother to do? I have in the past tried many times to pull him out of bed, take down his pants and stand him (hold him up) in front of a potty to pee. He has sometimes remained completely asleep while I do this. Rarely did he actually pee. His brain simply will not wake him up to go. We tried forcing it by taking away the diapers and thought well maybe if he wets himself a few nights he will get the point. That was kind of like rubbing a puppy's nose in its poop on the floor. Poor fuzzball just doesn't get it. The Huggies Goodnites website states that 5.7 million children in the USA wet their pants at night. Phew we are not alone.

So we continue to try and wake him most nights. Most nights he remains unwakeable (wish I could say the same for myself when my hubby is snoring LOL). And now I have researched bedwetting alarms (can add that subject to my informal PhD studies in autism). Who knew that there is a slew of alarms out there - wireless, plug in, wearable, bell and pad...they come in a variety of colors and ring tones. When I read up on these alarms, the overriding comment from parents was that they work, but you basically have to sleep in the child's room for a few months so that you can help them get up, turn off the alarm, go pee and put on dry pants if necessary - and this sometimes several times a night and for weeks on end. Uhh, no thanks. I decided to heed Finbar's pediatrician's advice "Don't get an alarm, all that will do is wake YOU up several times a night." It was her opinion, and mine too, that the sensory connection between brain and body that is needed to wake up at night to pee is not yet developed in Finney. So for now and perhaps the foreseeable future, it's Huggies Goodnites and a lot of $$ down the drain.

noreply@blogger.com (finbarsmom) — Tue, 07 Dec 2010 07:46:00 +0000

Post Colorado Update

"We can get him back" is what Dr. Pratt said to me (see previous post). I am pleased to report, and also worried to jinx things and get my hopes up in writing this, that Finbar is doing much better since his second BIT session in Colorado. There are certain somethings, certain moments, looks, words, thoughts emanating from him in the aftermath that provide a glimpse at what may be changing in his brain for the better. He still bounces around almost incessantly and stims on spinning things (I am almost convinced at this point that there is absolutely no therapy or medicine that can change this) - BUT, there is a certain flexibility, relaxed demeanor and tone, longer periods of physical and psychological calm, and willingness to compromise and admit wrongdoing that is ever so subtly creeping into Finbar's repertoire of behaviors. In the moment, when I am accusing him of committing a crime or insisting that he do things my way, and he quietly accepts in a soft tone with "Ok mom", in that moment I know that something has shifted in his processing of the world. That some new way of thinking is emerging. That perhaps he is able to take in more and deal with it instead of running away - HE CAN COPE. I am also seeing more honest, more present, more REAL feelings and self awareness being expressed by him. It is almost as if he is finally straightening up his spine, as strange as that sounds. It is like "OK, here I am, here is how I feel, just want you to know." A few days ago, I heard him say to a behaviorist who was facilitating a playdate, "OK, let's stop talking about how we FEEL about coloring this (cardboard) playhouse and let's just color." These things are markedly different in my day to day interactions with him. Still, he harbors much anger and blame, especially toward me, that rears its ugly head. He is still socially awkward at best. And he continues to get lost in repetitive loops and have uncontrollable outbursts, although much less frequently than 2 months ago. But the difference is that when he exhibits these poor behaviors, his reaction to MY reaction is more regulated, accepting and within the norm. So I am very hopeful. Hopeful that his increasing ability to cope and process emotion will lead to new behaviors and a positive learning curve and knock on effect. You will know that it is working if and when I board a plane to Boulder to get BIT training in the future - to be continued....

More on "G"

Well there has been no talk of marrying "G" of late, however there has been talk of sleeping with her :0 "G" came over for a playdate recently. The two had so much fun that Finbar insisted that she not leave and instead "sleep in my bed with me tonite." It is this very preciseness of speech and lack of social filters that results in many amusing moments with Finbar. There is no "do you wanna stay for a sleepover?". Rather, it is "I want you to stay and sleep in my bed with me tonite. You HAVE to, PULEEZ." The irony of this statement is that "G"'s father is Sicilian. If this were another year and place, who knows what might happen if he got wind of my son's proposal to his daughter.

So of course I say "no" and politely escort "G"s mom and "G" to the door, Finbar all the while perseverating on having her sleep in his bed. I am later told by my husband that unbeknownst to me, Finbar solicited his Dad for assistance in sneaking over to "G"s house to sleep in HER bed with HER, following up this plea with "shh, don't tell mom. You HAVE to help me Dad. You HAVE to." And he had a plan for how he and his Dad could do so.

Daily fringe

The other day, in the middle of the day, I was pounding and breading a bunch of fish and chicken breasts with gluten free breadcrumbs to vacuum freeze, and I reflected on all the things I did that day and on most days that were what I call "fringe activities". Fringe activities are things that I do or don't do that are a direct result of my son's autism. That day, I had run over to a grocery way across town in search of raw milk and non dairy rice cheese - two VERY hard to find and very expensive items. Here I was pounding meat because of Finbar's motor/chewing sensitivities and breading and freezing it because gluten free versions are hard to find and expensive (Finbar's entire gluten/dairy/soy free wholly organic diet is expensive and I estimate costs our family TWICE as much as a typical one). Also that day, I had our third appointment with a Marriage and Family Therapist that I requested to evaluate Finbar and help me decipher and deal with his anger and emotional issues. Finally, I thought of the many kids and moms from school that were at the park across the street that day while I was at home concocting in the kitchen, and the fact that on that particular day, as great a social opportunity it would be for me and Finbar to join them, it was a much greater social risk to do so. And so as I went in and out of the house putting groceries away and putting up Xmas decorations outside in plain view of these moms and kids, I, in effect, may have appeared to be, yet again, anti-social. Ugh.

The IEP meeting

Phew and ugh. A week ago was Finbar's IEP meeting and triennial review for his diagnosis of autism. I was presented with a slew of test results and information that I have STILL not had time to read over and digest. I am procrastinating on signing off on this IEP. Speech services were cut, with a rationale that I am not sure I wholeheartedly agree with. And that was AFTER I negotiated. Apparently because his vocabularly is off the charts, that means he doesn't need a speech therapist. What about COMMUNICATING?, I ask. You know, having a two way conversation, maintaining an appropriate tone of voice, choosing the right words to communicate thoughts....BUDGET CUTS. BANKRUPT CALIFORNIA. This is the result I thought. CUT CUT CUT. So we compromised on speech services, but I am still not sure I am going to accept it. The most conflicting issue for me coming out of this IEP is the idea of first grade being a longer school day than Kindergarten; however in first grade Finbar will have a classroom aide the same amount of hours he has now. This means that he would have support person in class a smaller percentage of his total day in first grade (and of course, the school district would not have to increase costs by paying someone to stay longer - CUT CUT CUT). The rationale presented "we don't want to create uneccessary dependence on an individual". To me that describes the art of being a GOOD classroom aide, not a rationale for cutting back on an aide. To be continued...

His autism diagnosis

During this year's IEP, Finbar's diagnosis of autism was reassessed. The ironic thing about having a child with high functioing autism is that you WANT them to get the diagnosis in order to get the school and support services, even if you REALLY WANT and can realistically hope that your child not to need the services. For an autism diagnosis, the child needs to be deficient in three areas: speech/communication, social and behavioral. And there are specific deficiencies in each of these categories that must be met. The jury of testers SAID that Finbar almost was disqualified for autism because of his excellent speech skills - I beg to differ however. He definitely has speech issues among others. What I realised in this IEP is that if I, THE MOM, had not been brutally honest with myself and the testers on the evaluations and questionaires they had me fill out about behaviors at home and in public places, then Finbar very well might not have received his diagnosis this time around. Time after time, the school staff rated him higher and better on most fronts (a relief) than his own mother did. But I know him best. And I know that my son has autism and struggles a lot, and the sad, on-the-fringe irony is that I have to advocate for his diagnosis. Whatever it takes.

The biggest plus of all this testing, was a confirmation expressed in several test scores, of what I and everyone who encounters Finbar already knows. The child is off-the-charts intelligent. Sure, he is still learning to read by sounding out words and learning sight words like the rest of them in Kindy, and it is not as if he is a math savant at age 5. However, apparently his "general base of knowledge" and his ability to conceptualise things, along with his vocab, are way up there. His mind thinks like that of a 16 year old, possibly older, but the test only went up to that age. He nailed all the riddles the psychologist gave him, often providing her with the answers before she finished giving the riddle. What this means, the psych told me and the teachers, was that some of the behavior we see may not always be due to autism, but in fact, due to giftedness that is not being properly engaged in class or elsewhere. He just simply is on another planet (her words) in his mind. The wheels are always spinning, ideas always churning, insatiable curiousity searching and mind cataloguing and documenting. There are no true programs or accomodations for really smart kids in Santa Barbara public schools, and it would not appear that there is much to offer in private schools here either. There is a gifted and talented program in upper grades, but with the current state of budget cuts, it is likely to not even be around by the time Finbar reaches the age. We will have to keep a close eye on how this affects his ability to learn and engage in a public school classroom. He needs to be in a math and science magnet school but there isn't one. To be continued...

It Takes a Village

noreply@blogger.com (finbarsmom) — Mon, 22 Nov 2010 05:49:00 +0000

Every year for the last three years during the holiday season, while everyone is beginning to think about what they are thankful for, who they love enough to buy even the smallest gift, and as the excitement of the holidays begins with the $20 faux lit Xmas trees parked outside the drugstores, I am reminded of the sheer amount of human horsepower put behind my son's year to year progress.

November and December are IEP and IPP time, that is Individualized Education Plan and Individualized Personal Plan. It's the time of the annual review of specific educational and personal goals written for Finbar and revised every year along with documented support, persons and agencies responsible for achieving them. IEP's and IPP's are legal documents, mandated by Federal law for all persons with special needs. Doing the necessary assessments, paperwork and meetings can be an exhausting and emotional process most years for all involved, me included. Finbar has his IEP meeting on November29th. I am always dreading the day, even though the meetings have usually gone well. It's just emotional and stressful.

For those who do not have special needs kids, think of the IEP/IPP process as having to go sit at a table with your health insurance company same time every year and explain why you need insurance, what ailments or potential ailments that you need to be covered and convince them (at your expense sometimes) why they should cover these needs. And you can argue that by law they must cover you, but they of course will always try to cut corners and/or may simply refuse. Now simply replace the "insurance plan" with "education and independent life skills plan" and you have the IEP/IPP process.

Also at this time of year, by December, I wonder why I am so spent, and then I remember, oh yeah - organizing Thanksgiving meal, attending school related holiday activities, planning two birthday parties (for my sons), buying birthday presents for my several relatives with birthdays this season, buying presents, buying presents, oh yes, and buying presents for the VILLAGE of people who help support my son. That would be this year - one occupational therapist, one speech language pathologist, one special ed teacher, one classroom aide, two in-home behaviorists...and a teacher. I get off the hook a little this year because we don't have an adaptive P.E. teacher or multiple rotating classroom aides. When it comes to the hoard of folks who have surrounded my son each year, I take my husband's wise words to heart, "you can't say thank you enough times." So presents it is.

Over the years, I think back to certain people who have worked with my son, and I am so grateful for their intervention and presence and dedication at much needed times. We've been lucky. So many families become so frustrated with the revolving door of people coming into their homes and working with their children. Alas many develop antagonistic or un-cooperative relationships. Some parents hear an "expert" telling them what behavioral problems their child has and so the parents resort to denial. Well, that can't be good for anyone especially the child. But I have always treated "Team Finbar" with welcome arms, respect and gratitude, no matter how exhausting the scheduling. I believe this village of people over the years has rallied around my son, first and foremost because of his charisma and charm, secondly because I embrace their presence and thirdly because they are well, good human beings. Here is a shortlist of significant accomplishments that talented people have drawn out of my son:

- Becky got Finbar to do his first pretend play putting out pretend fires around our house
- Becky also got him to engage in back and forth play by having him color a huge piece of plywood that they used hours on end as a car ramp.
- Sarah got him to refer to himself in first person instead of third person "Finbar"
- Sarah N. got Finbar talking to other children
- Serena got his gross motor jumping and climbing skills kickstarted.
- Emily made Finbar make his very first friend.
- Kristen made me feel like I was a good mom :)
- Lorie whispered in my ear on more than one occasion to advocate for Finbar when I was too scared to. She is always on the lookout for him.
- Jeanette got our family going to church again and became a nice mom friend who gave me mom advice.
- Josh taught Finbar how to act "like a cool guy"
- Cece was Finbar's girlfriend
- Jen showed us that Finbar could make it in Sunday school with the right support
- Cat taught Finbar how to put words to his feelings; Shilpa carried on that task
- Jenna got Finbar to dance with his preschool classmates
- Amber took care of preschool things for me/him when we needed her to without me even asking
- Miss Robbins fully includes Finbar and doesn't make me feel like my often disruptive child is unwelcome in a mainstream classroom
- Mrs. R is helping Finbar learn to play "kick" (soccer) at school with the other boys.
- Emily is available more than she needs to be for someone with such a busy schedule. She is determined to teach Finbar how to play nicely with other children. She cuts him no slack :)

There have been many more villagers over the years. Pediatricians, autism doctors, naturopaths, specialised therapists. Some are the same cast of characters that any child would have in his/her village - devoted understanding grandparents, crazy aunts (you know who you are), Nanan, Goomba...and other mothers (and fathers), especially mothers of neurotypical children from playgroups, school or the neighborhood, who have never judged or excluded Finbar (sadly there are many who have). And lest I forget the dozens of mothers of special needs children who have talked openly with me on subjects that most parents never dare to. And then, there are even the teachers at Declan's preschool, sympathizing with me. And finally a host of teachers of extracurricular activities who worked with Finbar's limitations so he could be included (thanks My Gym and Kindermusik!).

I realize as I look back this year, a particularly important triennial assessment year when his official diagnosis of autism spectrum disorder is reassessed, that I and Finbar could never have come this far without them.

GO TEAM FINBAR and HAPPY THANKSGIVING TO YOU ALL :)

PS - I forgot to include my husband. Kinda goes without sayin', he is there all along :)

Colorado Rocky Mountain "Hi"

noreply@blogger.com (finbarsmom) — Thu, 11 Nov 2010 03:20:00 +0000

As I sit in the Eyeopener Coffee shop in Niwot, Colorado sipping a large chamomile tea (it's about 40 degrees outside), I marvel at how little I have to do in this moment. Yesterday by 9pm, I felt that I had moved mountains, never mind landed in the midst of them and the wintry weather they bring. Finney and I are on another "adventure". "I am going to a doctor to get a massage, but I am not sick and I don't have a broken arm or anything", Finney explained to the folks on our plane who marvelled at his articulation.

And as last night I hollered in the rear view mirror at him once more to sit up straight in his backless booster seat and to stop asking me when we would get to the hotel, I squinted hard through the windshield of my rental Hyundai trying to read blurry highway signs, stressed to the max and pitying myself for the lengths I go through to give my son a chance at normalcy. As fatigue and worry about being lost on a busy dark highway set in, I thought, what the heck am I doing? Last time we were here it was a disaster. What was I thinking?

I admit that it may seem extreme and perhaps desperate to fly to Colorado on my own with my son, staying in a cheap motel and shuffling him and myself to 3 days of treatment, multiple appointments a day, and paying big no-covered-by-insurance bucks to a Naturopath who reassured me a few weeks ago that "the good news is that we can get him back." It was music to my ears as I explained to her that after we did the initial Brain Integration Therapy with her, Finbar was completely normal for 2 weeks, like we had never experienced. BUT, I explained to her something had gone terribly wrong. A switch was flipped after those 2 weeks and everything seemed to have short circuited and has gone awry since then. Then the doctor confirmed my hunch without my even mentioning it. The chelation we did following the BIT set off something, likely moving metals in his brain around, which had altered the good she had done. But she said "I can get him back, I have seen this before." Phew. Just have to get our butts on a plane, spend some more dough on this child and all is well.

I should be used to it by now. We have done two other similar trips for therapies. Costs a lot of time adn money, but how do you put a price on opening up neural pathways that allow your child to express love for others, jump off boulders fearlessly, tolerate the crunch of an apple and write his name? As I drove white knuckles through the sleet in the dark trying to find this podunk town of Niwot, full of guilt for hollering at Finney too much during the tired drive, lost on I-25, I thought - ya know, if he had cancer, there would be no question I would travel to the ends of the earth for any remote chance of curing him. And so I embraced my stress and pushed aside any worry of skepticism for what I was doing for him and gave him a big hug when we reached our room. I snuggled him tight before collapsing in the king bed next to him and reminded myself when I was awoken by his tossing and turning umpteen times during the night that I knew what I was doing was right.

So here I sit, 10 minutes until the end of Finbar's 4th hour of therapy today, relaxed. He has done quite well all things considered - not easy for any 5 yr old to lie on a table for 4 hours in one day. 3 hours tomorrow, 2 the next and then a flight home on Saturday. I wonder what he will be like in 3 days..I shudder with both dread and excitement, depending on the outcome. Right now I don't care, I have my chamomile, my peace and when I pick him up in 10 minutes, we plan to go hot tubbing at the hotel. It is going to snow big tomorrow too. Yes, quite an adventure :)

Postscript: went hot tubbing, made dinner in our room (mac n cheese, PB&J, gingerale and OJ mixed, and left over pizza for mom), played many rounds on the Leapfrog Explorer, Finbar drew in his "journal" and played photographer and now we are having snacks (waffles and more PB&J) before bedtime while we watch Kipper and chat. Do I detect a hint of happiness and flexibility in him that was not there yesterday???

More "G", "E" and space shuttle talk

noreply@blogger.com (finbarsmom) — Sun, 07 Nov 2010 03:56:00 +0000

My son fell in love again. This time he did so at the park in front of several older boys from school. And when within minutes of meeting her, he proclaimed his love for the (older) object of his affection, the bigger boys did as boys do - they turned locker room talk on him and teased him. Most kids tease and get away with it. Finbar doesn't give a hoot about what others think of him, no matter how big and tough they are, and he does not back down from teasing and bullying. He, like many high functioning spectrum kids, has a very clear sense of right and wrong and justice. Kids with Asperger Syndrome often see life this way - black and white, absolutes of right and wrong, no grey areas, no loosey goosey - simply justice and fairness for all. And Finbar thinks teasing is wrong, no matter what the circumstances. So he had no problem calling these boys out for being teased.. He marched over to the mothers of the older boys who were chatting at a picnic table near me and proclaimed, "ATTENTION ATTENTION parents of those boys. THEY (pointing to boys across the park) are TEASING me! They are teasing me!" At which point, I hurried him over to me to sit down and explain.

"THEY ARE TEASING ME MOM."
"OK, Finney, well you must have said or done something to make them tease you."
"Well, all I said was 'I love her', that's all I said and they teased me."
"Wait, you love who?"
"HER".
"Who's HER (looking over in the direction of the group of kids i see 2 girls)
"I'm gonna go tell them that it's not nice to tease me."

Just then a girl, who I later found out is named Emma and is 8 yrs old, walked over to Finney. Like an older sister she tells him it will be OK and tries to distract him. Her friend, Louisa, joins them. I later find out that it is Louisa whom Finbar fell in love with and just as quickly forgot about. But it becomes apparent that it is Emma who has a fondness for Finney. The next hour, she followed him around, twirling on the tire swing with him, explaining to him the facts of life, why the older boys were teasing him, why boys tease in general, patiently and kindly answering his barrage of questions and gently telling him that he was too little to understand. She was so kind and sensitive, I found myself contemplating asking her mother for her phone number.

I watched as she then protectively chased after him as he hauled butt across the park to go tell the (much bigger) teasing boy that he needed to apolgize. As I watched them running in the direction of the group of big boys, the 2 girls plotting how to protect Finney, I sat, held my breath and watched. A life lesson I suppose? I told myself.

He survived the confrontation. I soon after saw the mother of the teaser go chase him down and make him sit on a bench for a while. I'm not sure why, but I think maybe she heard them taking it out on Finney over by the big tree or maybe the girls told her what transpired. As I looked at the kid stting sullenly on the bench, I thought, Thank God Finbar can stand up for himself, but one day he is going to get the pulp beat out of him by a kid like that.

I also reflected on how Finbar only likes to play with girls. Not do or play with girl stuff, but play with and talk to them. I guess girls are more patient and apt to answer his probing questions. And they talk a lot and are more cerebral like Finbar. Boys just shrug his constant commenting off. And the older the girls, the better for Finbar too. He is right at home and vice versa with girls of about 8-10 years old. That happens to be the level at which he tested cognitively.

At a certain point, "G", the love of his life came to the park to play. She joined in with my kids and 8 yr old Emma. Finbar is clearly smitten. When "G" arrived, he quickly and plainly informed Louisa that he still loves her but "G" is the one he is going to marry "Sorry", he says, shrugging slightly. Luckily, Louisa does not seem affected in the slightest.

Later he tells Emma that he knows another Emma who is younger. Emma asks "is the other Emma pretty?", giving her feelings for him away for a moment. To which Finbar, completely oblivious to the true meaning of her question replies "YES, SHE IS VERY VERY BEAUTIFUL. SHE HAS BEAUTIFUL HAIR and EYES." Older Emma replies, "Oh." and soon thereafter departs, without so much as a wave goodbye from my son.

Boy has he got A LOT to learn about shared perspective, you know, the intuitive thinking that allows us to read other people's thoughts and feelings. He is going to get beat up over a girl and she will probably never know it.

He sees "G" again at the park the next evening. At some point, he announces again that he is going to marry her. Later, getting ready for his bath, he asks, "Mom, how can I get 'G' to marry me?" And without waiting for my answer replies, "I have to be REALLY nice to her right mom? Then she will marry me, right?" I reply, "Yes, but you have to be nice for a very long time until you are older and have a job and can support her and stuff."

In the bathtub he announces, "When 'G' comes over to play on Sunday I am going give her a bunch of flowers, cuz you're a girl mom and YOU like flowers. So that's it, I am going to go out and get a bunch of flowers to give to her when she rings the doorbell."

That was Friday night. Today on Saturday, Finbar decided he wanted to go spend the night at his Grandmother's. He forgot about his playdate tomorrow with "G". Boys.

Later as he was going to bed, he asked me to lay down next to him to count the planets on the solar system that hangs above his bed. We counted 7 planets, and I reminded him that he and his brother had knocked a few off. To which he replies, "Poor little Pluto got kicked out of the solar system. When I grow up and am a space shuttle pilot I am going to fly to Pluto and drag it back to Earth and put it on Earth's orbit. I am not going to even call it a dwarf planet....But then, poor neptune will be the last planet and it will be kicked out of the solar system. Hhhhhhuh. Good night mom."

Coincidentally, knowing that Discovery was going to launch this past week, on Friday he drew a picture of the space shuttle and asked me to write "Thank you astronauts for launching the last space shuttle" and he signed it. And we mailed it to Kennedy Space Center. Mission accomplished.

Finally on a side note, NASA has a "face in space" program whereby you can upload a picture and your name to be flown into space on the shuttle missions. I did this for Finbar for the most recent Discovery mission. And yes, it was the photo of him in his Pilot costume :)

https://faceinspace.nasa.gov/index.aspx

The Little Pilot

noreply@blogger.com (finbarsmom) — Wed, 03 Nov 2010 18:36:00 +0000

It is so hard to get Finbar to look at a camera, but in his pilot costume he is all smiles.

Giving a pilot's thumbs up took a little more thought..

Well this Halloween, I was once again reminded of Sudama's (see post on Shamans) assessment of Finbar. Finbar hates dressing up. Especially for Halloween. Up to this point, he has never worn a costume of any kind. This year was different however (for me). He is in Kindergarten now and there would be a whole-school parade in costume around our neighborhood on Friday the 29th. I cringed at the thought of my son being the only child out of 300 kids not wearing a costume. He could care less, but for some reason that I cannot explain, I cared a lot. With much hope I purchased a pair of black pajamas with a glow in the dark skeleton painted down the front. . I thought OK, they are pajamas, not a costume. Maybe he will buy this story. Well he did, somedays. Other days he said he would think about wearing the skeleton. I walked on eggshells for weeks each time the subject came up - "Finney, what are you going to be for Halloween?" someone would ask. "I'm thinking about it, maybe a skeleton, maybe not." he would reply.

Then one night 6 days before Halloween, "Mom, I've got it! Can you make me an airplane costume for Halloween? I want to be an airplane." Of course, why didn't I think of that? "Well Finney, I can't make you wings and stuff but how bout an airplane pilot costume?" (Amazon MUST have one, please dear God, gotta get online NOW). Glee on his face at the suggestion that he would be a pilot.

$35 later, the order was placed just before midnight on Sunday and I waited. The parade was on Friday. The package was supposed to arrive latest on Friday, which would be too late. Well as luck would have it, I drove around at 9pm on Thursday night from Kmart to CVS to CVS looking for a Mummy costume, which Finbar had decided would replace the no-show airplane pilot costume. Didn't find a mummy, but did find a Hippy costume for myself to wear to Declan's preschool Carnival the next day :) At least my trip wasn't for nought.

And so Friday morning comes and I report to Finney with much trepidation that I have had no success on the mummy thing. In a rare flexible moment, he wears the skeleton, thankfully. 8pm Friday 29th , last UPS delivery of the day is none other than the Pilot costume. I watch Finbar open the box, his body shaking and jumping with excitement, yelling "it's here!! it's here!! my pilot costume is here!!!". The smile, the precious, joyful, gleeful, indescribable smile on his face as he took the costume out of the box. "Mommy can I sleep in it, please please? Uh, on second thought, I'll just sleep with the cap, I don't want my fabulous pilot costume getting wrinkled. Please hang it up mommy so it won't get wrinkled."

For the next two days, about every hour "Mom, is it time to wear my pilot costume and go trick or treating?". Finally the moment arrives. He put on his costume and I just thought "he's so beautiful and adorable and he is just SO happy right now, I really wish he would become an airline pilot." It was a sight to behold...this little pilot skipping, hopping and chattering incessantly away down the sidewalk, describing in great detail each candy he acquired and how he picked it, explaining to those who had not noticed the wings on his uniform that he was not a ship's captain but an airplane pilot. He was in his element, on Halloween.

He plans to wear that costume for the foreseeable Halloweens, perhaps right up until he gets his real Pilot uniform. I have no doubt he will.

Seasons Come and Seasons Go

noreply@blogger.com (finbarsmom) — Tue, 02 Nov 2010 03:49:00 +0000

I was reminded of this saying as I walked around Zodo's Bowling and Beyond, frustrated with Finbar's lack of coachability in that moment and feeling a bit wistful thinking how very much I would like to find an activity that he LOVES so much that he will not give up on it, that he will allow himself to be coached by someone, that he will respect an adult and do what he is told. I had truly hoped and thought that joining the Youth Bowling League, something that he in a very rare case asked US if he could do, might just be THAT motivating to him. But just prior to that moment Finney had yelled at me that I was bossy, and had already sent one coach walking away in frustration as he tried to talk to him. I began to have doubts that bowling was IT.

It is difficult to describe the feeling I had just then, and have had time and time again over the years as I endeavor to open my child's linear mind and expand his interests...it's just not a fun feeling. It is an uncomfortable place to be as a parent. That place where you watch your child and yourself time and time again, try and give up, try and give up, try and give up, try and fail, and finally, in the end just not try at all. No resilience. This is the hallmark of an autism spectrum child. They simply cannot handle the slightest pressure, failure, or demand. It is a downward spiralling pattern that I caught a glimpse of at the bowling alley as my husband and I repeatedly watched our son throw the bowling ball over his head down the lane in defiance. This because we had tried to coach him to use the great 5 finger hole training ball that the coach had brought over for him at our request. He was in effect saying "f - u, I will not be bossed around or coached, I am doing this on my terms." Sigh.

The previous weekend, which was the first time he bowled in the league, he had done a fabulous job, scoring over 100 and taking turns nicely with an older boy he shared the lane with. He had been high fiving his coach and doing a bit too shamelessly his victory dance with each strike or spare that he bowled. I thought, wow, what a great confidence builder, hooray, perhaps we have found his niche. As I chatted away with the League organiser, a mom whose daughter competes and wins scholarship money in bowling, I pictured our family travelling to Los Angeles and Vegas for meets with Finney. I thought about buying him his own bowling ball for his upcoming birthday. I pictured him hanging out with other junior leaguers like the 14 yr olds that were competing a few lanes over. I thought, this ain't all that bad, this bowling thing. At least if I can't hang out with the soccer moms on Saturdays, I can have a beer and slice of pizza while I watch.  And they won't ask me to volunteer coach or referee :)

Then today. Oh well, I thought. Seasons come and seasons go. First there was the Gymboree class at age 9 months. Why won't he stay in the circle and listen to the clown singing and telling stories? I thought. Instead he would just crawl away and roll balls around the room incessantly.

Then there was My Gym. Why is he freaking out whenever another child touches him? Why does he hate the ballpit? Why won't he clap his hands along wiht everyone else? When I realized that I could no longer take him there, shortly thereafter his pediatrician mentioned the "A" word.

So, eventually we try Kindermusik. Probably our best run at an enrichment activity, thanks to the very easygoing teacher and the free environment.   I recommend Kindermusik for any child with special needs. It is structured, but there is a lot of freedom within that if your child is not a rule follower. Sadly, it was at the point where Finbar could most benefit from this program, that is, when he went to the classes on his own, that his behavior was not conducive to a productive learning session at Kindermusik. So Kindermusik too came and went.

After another failed stint at My Gym, I gave up on extracurriculars for about a year. Finally earlier this year we tried Karate. The coach was so so so very understanding and just a great coach. But Karate is no nonsense. The Sensei has the authority. After Finbar's first lesson the coach, who had forgotten that Finbar had autism, said to me, "Is he in Kindergarten yet?" "No" I replied.   "Good", he said, "because he needs to learn how to listen to authority before he goes to Kindergarten. This will be really helpful for him in that way." "Great", I thought, "can't wait for you to teach him to do THAT." 4 weeks later he sent my first month's tuition check back with a note in the memo line "we tried". Yes, we tried. And failed. AGAIN. Perhaps if I sell his uniform and karate DVD on ebay for a few bucks I will feel better.

After Karate, we lucked out a bit. After the book "Horse Boy" came out, I decided to get Finbar into riding lessons. A therapist's mother agreed to give Finbar lessons. He stuck with this for about 6 months, but did take a break at one point. We had to quit after his lesson horse died. I am currently looking for a therapeutic program for him to join. He has asked to do lessons again. Fingers crossed.

In spring, I tried to coax Finbar into doing an adaptive baseball little league. It is a fabulously run non-competitive program. They get uniforms too. He would have nothing to do with it. "I don't want to try it, I can't hit a baseball." He, like many other nerdy kids is not sporty and coordinated.

I signed him up for one art camp over the summer. Taking a big risk to have him go it alone. It was just 3 hours a day for a week and the theme was outerspace and planets, so I figure he would be motivated. He did fine apparently. I continue to try and find an art program that would suit him, one that has an understanding teacher and less than 10 kids.

It is soccer season now. Well, let's just say "fugghedaboudid".

Another program he started last winter was a Wilderness Youth Program. 3 hours a week of outdoor exploration at local beaches, deltas, reservoirs, parks and such. At first he LOVED it. I thought Eureka, this is IT. He thrives in the outdoors. Fast forward 6 months and he is being teased and bullied and quits. I can't blame him for wanting to quit. Guess that wasn't IT.

Last week, I found a new program in town that was offered an Engineering with Legos camp.   The owner has a son with Aspergers and was very very encouraging. She offered to be at the class while the teacher led it. Even said there was no need to have Finbar go with an aide. I hung tight, bit my tongue, crossed my fingers, said Hail Mary's, "Please God, please please please let him enjoy this and do well." I was not hopeful as I left Finbar in the class, hurling insults at a boy who had started playing with a Lego thing that he wanted. But I left and had my husband pick him up, so unable was I to take the bad news. Yes, Bill confirmed. Not good. Pushing and shoving other kids. General rude behavior. I am still waiting for the owner to call me back and let me know if he can return. I am not sure he should. Seasons come and go. Sigh.

And so here we are. Zodo's Bowling and Beyond Youth League. We survived the second day and will go back for a third round. I did learn one thing. I cannot coach my son (yikes, I AM bossy). I am OK with that. I think he is MORE than OK with that. If bowling doesn't stick, I am not sure what to do....I suppose there is violin, piano, gymnastics....I try to tell myself that Bill Gates and Michael Dell probably did not have many other interests outside of computers. Wish I could find him a web design class...

Ode to Desks

noreply@blogger.com (finbarsmom) — Fri, 22 Oct 2010 06:49:00 +0000

I picture buried under a few years worth of mundane city trash piles of discarded school desks. Or maybe old desks are warehoused in school district mobile storage units collecting dust and cobwebs. Or better yet, perhaps these now disrespected former tools of education have been shipped off to third world countries for use in one room village schoolhouses.

Where have all the school desks gone....and why? I find myself pondering another topic due to my son's situation that I would probably not have considered were it not for his sensory issues...

When I was visiting umpteen private schools this time last year searching for a good Kindergarten fit for Finney, I visited a very traditional Catholic elementary school in town. As I toured the school and its long hallways with extra high ceilings, thick stucco walls and solid wood floors, memories of my 13 years of Catholic education came flooding back. The familiar feel of a cold draft in the hallways, the echo in the indoor auditorium, the genteel priest, the lack of fanfare on the walls and in the classrooms, the statues of the Virgin Mary, and the quiet soberness in the air. I had forgotten how different such a school is in a town of mostly "progressive" educational institutions. But it felt like home to me, safe, secure, somber.

I recall the deacon who was showing me around explaining to me that he had just this past year "modernized" the classroom setting and teaching method by getting rid of desks and chalkboard teaching and organising the classrooms into "learning centers". I remember thinking, wow, it took them THAT long to catch on to the way every other school was teaching these days? Not impressed. I recalled such boredom in elementary and especially, high school, sitting at a desk trying to pay attention to the teacher, praying not to be called to the chalkboard, all the while being passed notes from friends because we could not talk while at our desks. "Learning centers", yes, that made sense to me. Engaging and cooperative - fun, not boring I thought.

Fast forward one year and my son is having a LOT of trouble learning in the learning centers and if we do not find a solution to his problems soon, I do not know what we will do. Why is he having such trouble, I have to ask myself? Well for starters, learning centers are chaotic. Picture twenty 5-yr olds, splitting into 2 or 3 groups, moving from floor carpet squares to chairs, chairs and tables that are squeezed into a small area, chairs that screech across the floor as they are moved. The students don't have desks with all the supplies they need to work with right there, so they wander around the room finding the glue stick box, the pencil box, the crayon box, etc. All the while, kids chattering away. No order. No quiet.

So the kids take the expected 5-10 minutes to settle down in their learning groups. I, a parent, now acting as a volunteer "teacher" one hour a week to one of these groups, attempt to talk the children through the concept that they are supposed to learn and their requisite activities, raising my voice over the noise of the other kids in the other centers, and asking them to turn their little bodies in my direction to pay attention. My son is lost within 2 minutes. Too many steps to recall for his ADHD type mind amidst the noise.

While we are working, there are other kids moving about the room, some doing free choice on the floor, others choosing a different workspace because there may not be enough room for their taste at the group table, others walking around to find supplies. Voices come and go. I patiently go around the table offering help and keeping kids on task.

Finbar succeeded the first week in efficiently completing his work in this setting. Each week thereafter his behavior and ability to work in the group setting has declined to being completely out of control this week. I'm not making excuses for my son. There is ONE girl in the group who can completely work independently and finish her work with virtually no assistance. But I must say that the other 5 children get distracted by the stuff going on and have to be prompted to continue working every few minutes. Finbar is the worst of them usually. His sensory system simply cannot process the background noise or filter it out. He has told me this. He consequently can't think straight, forgets what he is supposed to do, feels overwhelmed and helpless and has a breakdown.

The close physical proximity of the other children is a challenge as well. He is tactile defensive, so his sensory system fears invasion of personal space, so he is tensed all the while worrying about being touched inadvertently. Sometimes the fear is so great that he kicks or shoves another kid in anticipation of being touched. If he were in a desk, he would not be close enough to kick anyone and everyone's personal space would be clearly defined.

I am not an educator so I am sticking my neck out a bit here - But why is this the new BETTER way to teach? Where is the benefit over desks? What happened to order and quiet in the classroom? Can we really expect 5 yr olds to learn on the floor and in groups in such a distracted manner? I can't help thinking that Finbar's sensory system and brain would function much more attentively in a hard, wooden desk FACING the teacher and learning materials (not another child across the table from him), his and everyone else's personal boundaries clearly defined, all work materials and personal belonging in one spot within reach, and the focus being in one place - a chalkboard. Now the chalkboards are used to hang up class artwork and pictures of the kids. And in this setting, every child would be expected to STOP TALKING AND DO YOUR WORK. Peace and quiet - ahh.

I vividly recall my Kindergarten days. "Take out your phonics books please" Mrs. Bahan would say. Everyone heard, no need for her to raise her voice. We were quiet and sitting still in our desks. We all did what she said when she said it in synchronicity. She proceeded to show us the lesson on the chalkboard, sometimes having one or two of us go up to practice on the board. Allowing time for questinos, we would raise our hands from our desks. Then we took our pencils out of the little slot carved in the desktop for such a tool and did the requisite exercise in our very own phonics textbooks - what happened to textbooks? And the teacher REQUIRED us to work QUIETLY. If you were a disturbance to the class work, your desk was put up front by the teacher's desk. How's that for focus?

What was so wrong with this desk learning model I wonder? Don't we all go to the library or a quiet place to read and learn? Even at Starbucks you see everyone studying with headphones on blocking out the background noise. And unless it is a study group, you don't see strangers studying around the same table at a coffeeshop invading someone's personal space. When I am at home on my PC working, I don't pull up a chair next to my husband while he is working at his desk, saying "Hey, let's learn and engage together". If adults need quiet and space to study and learn, why on earth would we expect 5 yr olds to learn BETTER without quiet and in such close proximity to each other? They are not MBA students. Arent' we asking a bit much increasing class sizes to 25 or 30 kids and then expecting teachers and kids to maintain calm and focus in such a configuration? It's no wonder there is a seemingly increasing number of kids who have "ADD" and "learning disabilities" identified at school. But is that a fair assessment when we put children in this kind of learning environment?

I would like to emphasize greatly, that this is NOT ANY teacher's fault. Finbar's teacher is executing the educational format common in today's schools. My theory is that "learning centers" are an excuse for accomodating budget cuts to public schools. You don't need to buy textbooks to fill desk cubbies. You break the larger classes down into manageable pieces for the teachers and pray for decent parent volunteers to take on a learning group or two. And I suppose you can cram more kids into the classroom if you don't have desks set up. And in today's world of increasingly loose boundaries the idea of learning centers gels with the out with the old and dull, in with the new and groovy mentality.

I spent my whole school career at Catholic schools sitting in a desk. I graduated with Honors from a top MBA school, so I certainly did not suffer from a lack of learning centers. Perhaps this old Catholic school had it right. They were willing to work with Finbar. Ultimately I did not send him there because the school's test scores were quite low - I believe due to an outdated curriculum, not the desk teaching model. But if that school still had desks, I might just be re-visiting it at this point. I am thankful for St. Francis Cabrini, St. Pius X and Ursuline Academy for their desks :)

Decky Doodle, Child of Grace and Finbar's Little Bother

noreply@blogger.com (finbarsmom) — Sun, 17 Oct 2010 05:23:00 +0000

Always smiling

Declan chose to eat his "spwinkle" donuts naked while it was snowing nonstop outside

I have been meaning to write about my second child Declan, affectionately known as Decky. He is 3 1/2, exactly two years younger than Finbar. Decky has many nicknames, which might give you an idea of the character that

he is. Here is a partial list of his nicknames: doodle poodle, snuggle bunny, fuzzy wuzzy, fuzz bucket, Tank, Survivorman, snuggle bug, snuggly buggly, #2, the lil general, the two footer, the Destroyer, the Wildman, Energizer Bunny, Mr. Independent....

But the nickname by which Finbar refers to Declan is "My little BOTHER". And that is the term he uses to introduce Declan to complete strangers at any chance he gets...."Hi, I'm Finbar. And this here is my little BOTHER (emphasized) Declan. You see, I call him my little bother instead of my little brother because he bothers me a lot, but sometimes he is nice, but mostly he just bothers me and makes me mad, etc, etc, etc."

Declan shares Finbar's fascination with throwing rocks in the lake for hours on end

Poor Declan takes a verbal, emotional and physical beatin from Finbar on a daily basis, but he can dish it right back to his older brother, all the while with a smile on his face.

I'd like to dedicate this entry to Declan's new preschool teacher, who has come into his life at just the right time and has been so supportive. You see Declan is an energizer bunny, and his new teacher's arms are a great receptacle for that energy - her enthusiasm matches his. At 3 yrs old, he needs another pair of loving arms to welcome his energy because his older brother sure as hell does not welcome all that energy into his spectrum world... too overwhelming.

And yet, it is that same high level of energy and zest for everything which Declan possesses that has been so instrumental in drawing Finney out of his autism and into Declan's world of play, imagination, motivation, celebration, music making, conversation and socializing. Were Declan a mellow yellow kid, I would be SOL and Finbar would have very little interest in playing with anyone.

But thank God for Declan, the child of grace...going back to the Shaman visit that I wrote of previously. After Sudama was through checking out Finbar, he walked into the playroom where Declan was sitting and asked me "what about your second child, anything I need to do?" Declan said not a word. And almost telepathically, Sudama and I both looked at him and just shook our heads, "no". Then Sudama just kind of nodded in agreement with me, saying "child of Grace". No need there.

Child of Grace he is. God gave me a gift in my autistic son. And then he saw me struggling with that gift and sent me a follow up gift in the form of the world's most forgiving, empathetic, intuitive, kind, intelligent, completely tough and confident baby brother for Finbar. I truly believe in my heart that God sent Declan to be a teacher for Finbar and a refuge for me. His profuse enthusiasm and affection, overboard at times, easily fill a room and fill a void in me and our family that was created in the early years when Finbar was very detached. While Finbar is tactile defensive and gives me a stiff hug now and then, Declan ORDERS me to snuggle and spoon him EVERY morning as I am greeted with "Mommy snuggle" and a kiss on my forehead. Throughout the day, I am ordered to repeat this event. No hug is too tight for him. Bliss.

When Declan was born, I had just realised that Finbar had autism and during the first 3 months of Declan's life, I tried not to think about what was coming down the road with Finbar. It was a dark time and I know that I did not completely bond with Declan during those first few months, so depressed and preoccupied was I. But when Declan was about 6 months old, I began to see that he had an extraordinary personality, like a prayer answered he snapped me out of my depression with this vivacious bold, personality. He was a LOUD baby. I mean REALLY loud. He would guffaw at the slightest prompting and so very loudly, his whole body shaking bald head to toe. And he played drums with anything anywhere all the time. He was extraordinarily strong and confident. A real go getter. Still is. The first year of his life Finbar detested Declan's very loud gregarious presence..

But I am convinced that no other sibling with no other temperament than Declan's would have been so beneficial for Finbar's progression into our world. Declan is simply so bold, so confident, so in your face sweet, that there was no way that Finbar could avoid interaction with him. Another sibling personality would have shrunk back and given up on having any fun or sharing any love with Finbar in those early days. Finbar would ignore, push, shove, yell, bump, kick (still does) - but Declan's natural love and desire to be with his older brother and his self confidence in the face of his older brother's threats was too strong. Despite how badly Finbar treats Declan at times, Declan is fiercely protective of his older brother and will not even sit down to eat dinner without Finbar. And Declan seems to intuitively know that Finbar requires a lot of leeway and most times he willingly gives it to Finney. He is also so intelligent and clever that he can keep up with his older brother's verbal output and quirky habits. So there is no way that Finbar can avoid interaction with him. Declan simply will not have it.

In view of all this, we recently got rid of the behaviorists. For 3 1/2 years we have had numerous adults spending umpteen hours a week teaching Finbar to play, and they did make progress. But strangely, without them Finbar plays better and more with his brother than ever. And he seems to be benefitting as much, if not more, than playing with adult therapists 10 hours a week. Declan is leading the way most times, inviting Finbar into imaginary play...Finbar usually trying to assume control but secretly enjoying the play. And in recent weeks, I have seen Finbar initiate the imaginary play with his brother too.

In the end, they get frustrated with each other, they fight, they wrestle, they scream, poke, kick, hit. It drives me nuts, but I am so grateful that it's that way instead of something else. Thank God for the little bother.

I live with Dory

noreply@blogger.com (finbarsmom) — Sun, 17 Oct 2010 03:00:00 +0000

I live with Dory from the movie Finding Nemo, you know the fish that had no short term memory. Only thing is, instead of Ellen DeGeneres' voice, she has Finbar's.

Here is a sample of "conversation" that occurs with my son on a daily, hourly basis.

Finbar: "Mom, how many months until my birthday?"
Me: "Remember we talked about this yesterday, you know the answer."
Finbar: "huh? well, uh, can you tell me again, I don't remember."
Me: (tensing up because this is the umpteenth conversation we've had like this) "OK, RU listening carefully to my answer because I am only going to say it once?"
Finbar: ( has momentarily spaced out):   "uh, what did you say? .. uh, yes I'm listening."
Me: "Your birthday is in 2 months... So how many months is it until your birthday Finney?"
Finbar: "uh, 2 months. (pause) But did you say 2 months mom?"
Me: "Yes."
Finbar: "But how many days is 2 months mom?"
Me: "I don't know Finney, about 60."
Finbar:   "60 days mom?"
Me:   "yes finney, 60 days."
Finbar:    "But are you SURE 2 months is 60 days mom?"
Me: "Yes, I'm sure 2 months is 60 days."
Finbar: "So my birthday is in 60 days?"
Me:   "YES Finney."
Finbar: "So 60 days is 2 months mom? My birthday is in 2 months? That's 60 days right?"
Me:   "That's what I said Finney. So how many months until your birthday?"
Finbar:   "Uh, did you say two months mom? You said 2 months right?"
Me: "Yes Finney."
Finbar:   "Oh. And two months is 60 days, right mom, right? My birthday is in 60 days then? "
Me: "YES FINNEY. NOW STOP TALKING ABOUT IT PLEASE."
Finbar:   "Oh, OK mom. (pause) Mom, my birthday is in 2 months."
Me:   'YES. STOP TALKING ABOUT IT. MOVE ON."
Finbar: (a little quieter now) "Mom, my birthday is in two months"
Me: (silence)
Finbar: "Mom, my birthday is in two months"
Me: (silence)
Finbar: "Mom, my birthday is in two months. Mom, why aren't you answering me mom? mom? MOM!"
Me: (blood boiling now): "BECAUSE I ALREADY DID. YOUR BIRTHDAY IS IN 2 MONTHS FINBAR, NOW STOP TALKING ABOUT IT OR GO TO YOUR ROOM UNTIL YOU ARE READY TO STOP TALKING ABOUT IT. "
Finbar:    "I'm ready mom. Why do you always get mad at me? I was JUST asking a QUESTION."
Me: (in my head) "Just keep swimming. Just keep swimming. Just keep swimming, swimming swimming. What do we do? We swim, swim, swim. ...are you my conscience?". - Dory

There is much research surrounding the link between Autism and Alzheimers. Some liken Autism to the Alzheimers of children. Both appear to be caused by brain inflammation. We will be seeing a neurologist about this very soon.

His World

noreply@blogger.com (finbarsmom) — Mon, 11 Oct 2010 03:11:00 +0000

Bright children are fascinating. I have to be honest and say that there are children who have an average intelligenc and they are not really fascinating. But the really bright ones are. I wonder what kind of child Bill Gates was. My son is super bright. He is fascinating to most adults, most are captivated by his articulation, charm, curiosity and wit. Too bad other 5 yr olds are not as fascinated. One of the fascinating things about my son is watching him make up his own entertainment. In his own world, in his mind, where he lives a lot.

Lately, Finbar has been "stimming" a lot. Stimming, or self stimulatory behavior, is a lot like chewing on your pencil, picking your nose, shaking your knee when sitting....its usually an outlet for some underlying anxiety, deep thought or nervousness. Stimming is a key factor in autism. When Finbar stims, he stims with his entire body. He kind of grits his teeth, eyebrows pursed, making some humming noise, fingers flicking, arms stiffly shaking up and down, legs stiffly jumping up and down and around. It is very medicine doctor-like. When he is in this trance, he doesn't appear to hear you. Time and time again I ask him what he is thinking and feeling when he does this and he can't remember. Or he will consistently say that he does that when he is excited. Anyway, I find this way of tuning out the world fascinating to watch (and disturbing as well). It is so unusual - where does it come from?

Other ways Finbar checks out of this world are amusing. Here are some things I caught him doing recently:

- raising the pump lever of a bicycle pump to different heights and watching how fast or slow it went down when he released it.
- sailing a model wooden sailboat in a 6 ft long gutter fillled with water for 2 hours
- filling and emptying the laundry sink repeatedly for more than an hour to watch the "black hole" or whirlpool of water go down the drain
- filling the drain of same sink with first a popped balloon and its string, and then stick after stick after stick.
- turning on the outdoor faucet and watching the water flow out, all the while stimming while his shoes got soaked.
- walking around the house "flying" a jet plane for an hour without saying a word

I wonder, do other children engage in this sort of self entertainment? Dunno. My other son does not do these things. He plays trains. Other kids seem to build legos and play Leapfrog. But that is less interesting to watch...

More "G" and Space Shuttle talk

noreply@blogger.com (finbarsmom) — Mon, 04 Oct 2010 04:24:00 +0000

Just a quick follow-up on previous blogs topics. We've had two more encounters with "G" since posting. First was at an adult birthday party. Long and short of it was at the end of the evening I found Finbar and "G" playing quietly (and he looking very content to do so) in a bedroom with what appeared to be a mountain of pink toys. When i asked him later what they were doing he replied, "Uhhhh, we were playing with girl toys. It was sooo boring." But he happily stuck with her. What a guy.

Last night "G" came over to our house with her parents. I caught Finbar just ga ga staring at her from afar several times. Poor sap.

Finally, I watched a documentary called "In the Shadow of the Moon". It is the story of the astronauts who went to the moon from 1968-1972 told in their own words during interviews. These were fascinating and amazingly brave, highly intelligent men, who are all now about 80. Real American heroes. I experienced great relief when more than one mentioned that as a child all he could think of, all he wanted to do, was to fly. Model airplanes, rockets, the works. Buzz Aldrin was even known to be a bit obsessive about some scientific topics, talking endlessly about orbits and such. I was immediately relieved to know that (as long as Obama doesn't shut down NASA entirely), there still is hope that Finbar in fact, being of similar mind to these cool ole guys, will learn to fly and even become an astronaut or rocket scientist. In fact, in recent days he and I have come up with his plan for learning how to fly. First, learn to read, write and do math. Second, purchase a flight simulator software package around age 8. Third, get into flying model airplanes around age 10. Fourth, take flying lessons around age 11 or 12. Finally, attend a commercial pilot school for college. Space shuttle pilot...

The Dry Erase Board Artist and Angie Dickinson

noreply@blogger.com (finbarsmom) — Mon, 04 Oct 2010 04:02:00 +0000

I went to Ross the other day and overspent in the toy section, yet again, in the hopes of finding some piece of plastic made in China that will spark the imagination and creativity that so many therapists have pointed out are lacking in my son's play. To that end, our playroom looks like a full blown preschool. We have toys in neat little canvas bins on shelves - manipulatives, imaginary play, sensory toys, arts and crafts, trains, planes and automobiles, marble towers, Candyland, play huts, floor cushions, bean bags and the list goes on. And to boot, we have converted our carport into a quasi occupational therapy center complete with tire swing and cocooning hammock.

When Finbar was a baby, he would not engage with any toy for long (an autism red flag often overlooked). Many toys were uninteresting to or frightened him. He never liked sounds and lights - overload. As he increasingly grew interested only in balls and things that spun (so he could stim), I searched far and wide for the perfect toy to engage him and filled a 20x20 playroom in the process.

Long ago my goal was simply for Finbar to roll a ball back to me. The "goal du jour" is imaginary play. This is a common skill deficit in autistic children, and by age 5 deficit clearly separates and isolates many ASD kids from peers.  According to experts imaginary and dramatic play is all the rave in the typical 5 yr old's world. Pretending to be pirates and Star Wars characters, putting on puppet shows, playing doctor, and dressing up for Halloween (Finbar's worst nightmare) are all "normal". I frankly don't remember being into dress up and dramatic play as a child and I certainly hate to dress up in a costume now, so this bout of developmental focus is a stretch for me.

But I plow on.  I am in Ross and amongst other things I see a mini dry erase board with chalk board on other side. It folds out like a tent to sit on a table. I think, good for practicing letters. But - Bingo!    When I brought it home, Finbar drew on the board for more than two hours stating, "mom, I'm going to be busy doing this all day". He drew sheep, penguins, and then for about an hour he drew the planets, earth and its oceans, the solar system and all things in the universe it seemed. We even had a little contest drawing pictures and having the other one guess what it was. He was on imagination fire and I got my 10 bucks worth out of that toy :)

Just one year ago, I was resigned to the fact that Finbar would never really draw or color. And I was just praying that he would learn how to hold a writing utensil correctly by the time he was 7 or 8, his fine motor skills were so lacking. And here he is at age five holding the dry erase pen correctly and free drawing.

We are so impatient with our kids sometimes. Development, even in a developmentally delayed child, HAPPENS. We always want our kids to start at the end result. In this case, holding a crayon and drawing a great picture, colored in, by age 5 - because that is what Suzie G over there can do. But with Finbar, I realized that many kids need to take baby steps and we as parents need to recognize and support this. So we started with stick drawings in the sand. It was then I realized that he COULD write his name, just not with a pencil. Then it was sidewalk chalk. That's when I learned he COULD draw pretty detailed pictures, mostly of rocket ships mind you, but great pictures, just not using a crayon. Then it was a chalk board, and lo and behold he COULD write letters and numbers, just not with a pencil. So now, we are working on the pencil in Kindergarten. I give him golf pencils, the half length ones and he holds them fine. Give him a long one and he is lost. But he has closed the gap with his peers. Patience. It only took a year.

oh yes, and I FINALLY convinced him to wear a Halloween costume this year....well, sort of. It is a pair of glow in the dark skeleton pajamas. Patience...

On another note, a very very sad and disturbing article came across my screen.. Click here for story. Apparently Angie Dickinson and Burt Bacharach had an only daughter who just committed suicide at age 40. She had Aspergers, but did not know until she was in her twenties. This led to lack of early intervention and poor decisions about her care. The description of her as a child is not unlike my own son - highly verbal and precocious, but with severe sensitivities.  After reading I feel so blessed and lucky in my unluck that Finbar was born at a different time, a more opportune time. I have lots of hope for him and children like him. Poor Angie Dickinson was not given that same hope. She speaks throughout the article of her daughter never really feeling grounded and connected. My son feels the same. But in today's world, with all the awareness and early intervention, I am hopeful that those who live in this world will help him stay grounded and connected by reaching out and understanding. If you are reading this blog you are one of those people :)