Subscribe Now for Updates

Monday, November 4, 2013

Guaranteed

I dedicate this blog entry to Serena Sutherland, who died on Halloween Day, and who was the first person to identify Finbar's special relationship with gravity. May her soul be at peace.


A few years ago I consulted with a so called Shaman, a modern day energy healer named Sudama.  I wrote about this (click here to read).   Two things that Sudama told me made a lasting impression.  Every Halloween I am reminded of these two things and the change in perspective it gives me.  He said:

1) That Finbar had died a very traumatic death in his previous life, which was recent.  Sudama likened it to a World War II pilot being shot out of the sky and falling to his death, all the way knowing that his death was coming, that he was heading toward earth.  He said his body was smashed into the smallest particles of matter that exist, such was the impact. His soul apparently still was (is?) traumatized from this death. 

2) Sudama said that upon seeing Finbar enter our living room, that he kept hearing the words "Space Shuttle Pilot" repeated in his head.  He said that he didn't know what this meant.

Sudama's message to me was that I could choose to believe my son had a "disease" or "condition" that had a label (autism). Or I could change the story and choose to believe something else, such as what he was telling me - that all this odd behavior was the result of a traumatized soul. To this day, when I have the presence of mind to be able to change my story about Finbar, thinking of him as a Space Shuttle Pilot brings me peace. Wouldn't an astronaut who commands a space shuttle have to be an exceptional human being?  You only have to watch Sandra Bullock in the new movie Gravity to find out ;)


Ten years ago today, the Space Shuttle Columbia was just 16 minutes from landing at Kennedy Space Center when disaster struck.
Parts of Columbia fall to earth
A few days after this encounter, by coincidence, or perhaps not,  Finbar went to the library and randomly checked out many books on the space shuttle.  While I was reading one of these books to him, we came to a page about the tiles. It explained how they protect the shuttle from burning up upon reentry into the earth's atmosphere.  Finbar pointedly asked me what would happen if the tiles fell off, which I thought was an interesting question from a four year old.  In the moment that I told him that the Space Shuttle would burn up and that that very thing had happened a decade ago, I was overcome with a feeling that Finbar had been on the Space Shuttle Columbia that blew up when the tiles flew off.  This event occurred in 2003. Finbar was born in 2004. Recent. Certainly his body would have been smashed to the smallest possible particle with such an impact.

Since then, on the Halloweens that Finbar does dress up for, he has dressed up twice as a pilot, and this Halloween, as a Space Shuttle Commander.  This Halloween, I was once again reminded of Sudama's "mythopoetic" space shuttle pilot story.  I wonder, is it possible that Finbar's old soul "comes out" on all Hallows' Eve?   And thus he chooses these costumes and speaks like a pilot or shuttle commander?  All Hallows' Eve (Halloween) is the beginning of a liturgical time for remembering saints (Hallows), martyrs and all the departed.  All Saints Day is the day after Halloween, and All Soul's Day is Nov. 2.  These are days during which Christians pray for the departed who have not yet been purified and so have not yet reached Heaven.  These souls who are in "purgatory" are there only temporarily until they have been wiped clean of  sin.  Prayer is meant to help wipe them clean and move these souls along to Heaven.

Seeing Finbar dressed up as a shuttle pilot and proclaiming to all that he would become a modern day version of an astronaut pilot someday,  I wondered if I should change my story again and simply pray for his soul to be at peace.   Maybe this life on earth is his soul's purgatory?  But then I ask myself do I want my little space shuttle pilot to go away? Not really. Sorry dude, you're stuck here on earth with me, at least until I go to purgatory. And maybe you just have autism after all...

Recently, I have been listening to an Eddie Vedder tune from the Into the Wild soundtrack. It is called Guaranteed, a beautifully poetic song that always brings my son to mind.  There are a couple of lines that are simply, Finbar...

Got a mind full of questions and a teacher in my soul   - his past life soul perhaps?

 Owning me like gravity are place that pull -  Sudama, Finbar's former occupational therapist, Serena, who coincidentally died this Halloween, and Finbar himself all declared at different times that Finbar had a special relationship with gravity...Sudama said it was because of his falling to earth. Finbar said that gravity was his friend. It meant that people weren't actually pushing him down...

The entire last verse is just, Finbar truly living Life on the Fringe...

Here is the link to the song and the lyrics. I hope you think of my little space shuttle pilot whenever you hear it :)





On bended knee is no way to be free
Lifting up an empty cup, I ask silently
That all my destinations will accept the one that's me
So I can breathe

Circles they grow and they swallow people whole
Half their lives they say goodnight to wives they'll never know
Got a mind full of questions and a teacher in my soul
And so it goes

Don't come closer or I'll have to go
Owning me like gravity are places that pull
If ever there was someone to keep me at home
It would be you

Everyone I come across in cages they bought
They think of me and my wandering but I'm never what they thought
Got my indignation but I'm pure in all my thoughts
I'm alive

Wind in my hair I feel part of everywhere
Underneath my being is a road that disappeared
Late at night I hear the trees they're singing with the dead
Overhead

Leave it to me as I find a way to be
Consider me a satellite forever orbiting
I know all the rules but the rules did not know me
Guaranteed

Sunday, October 27, 2013

Eligibility



"Let’s be clear here. We are not doing assessments to determine eligibility for special ed services. No one is questioning Finbar’s eligibility. So we need to decide what kind of information we want to get from the assessments that would be useful to the process of determining appropriate goals and supports. But again, we are not going to question his eligibility.”  With that, the school psychologist smiled. This month was the time for both the triennial round of assessments to determine Finbar’s eligibility for special education and his annual IEP (Individualized Education Plan).   It was a time to look back at Finbar's progress or lack thereof and a time to set goals for the next 12 months.
The special education process is a perfect example of Life on the Fringe.  Our school psychologist who is an insightful confidence instilling woman seriously questioned Finbar’s diagnosis at his last triennial assessment. This time, she was trying to alleviate any fears that I might have that Finbar would not be deemed autistic by the school district after his triennial diagnostic assessments, and would therefore lose his services.  I should have been relieved as she intended for me to be. I was to a certain extent. On a good day of testing, Finbar could easily charm his assessor and pass for a fairly normal kid - that is what happened during his last round of assessments.  But the psychologist had witnessed Finbar's traumatic start to the school year and no, she would not question his need for accommodations this time.

At the same time, I felt a certain regret that we have not managed to ween  Finbar off special education services and the web of paperwork and advocacy that goes with it.  I had been so sure that this was possible when he was in Kindergarten. Third grade seemed so far away then.  I recall announcing at his 1st grade IEP meeting, “my goal is to have Finbar out of this whole special ed process by the end of 2nd grade. I think that is entirely doable. But with respect to aid in the classroom, let’s not pull the rug out from underneath him too soon.”  Good, but slightly wishful thinking, mom. He still needs the rug, albeit less often.  He has finished 2nd grade.

Now with the upper grades looming on the horizon, and all the social and academic pressure that comes with that phase, I tell myself to be grateful that Finbar won’t have to weather all that intensity without someone cutting him some slack and watching his back. The fact is, that with an IEP in place, we and Finbar have legal rights requiring the school system to accommodate his quirks.  The IEP basically gives me the right to call a meeting at any time to discuss how the school should be meeting my child’s needs.  I can ask for supervision on the playground and on field trips.  I can ask for testing accommodations.  To a certain extent I can request who I wish his teacher to be. And for the most part, the school has to accommodate my requests.  People pay $15k a year for private school and don’t necessarily get that right. I feel better already J

I wonder what they would think if I wore this to an IEP meeting?
 

The day of Finbar’s IEP meeting, it just so happened that the perfect storm of Bill, me, Finbar's teacher and the special education teacher heading toward the meeting room met Finbar who was riding his scooter on his way home.  He stopped and looked at us quizically.
 “Hi.  Whatcha doin?”  
 “Oh, just going to have a chat with your teacher, Bud.”
“Oh. I see.  Can I come?” 
“No, grandma’s waiting for you at home. Go on home bud.”   
“But why can’t I come?” 
“Because you are supposed to go home. The meeting is just for adults.”  
“Oh, alright then. Bahbye!”  

With a wave, he scooted away looking back at us over his shoulder, wheels spinning in his head.  Busted.  The light bulb went on in my head.  I can no longer hide the fact that I will be talking to the school personnel about him frequently.  He must know that he just went through umpteem rounds of testing and observation.  I would have to tell him about the meeting and our discussions eventually. If he is old enough to scooter home on his own, then he is old enough for me to be honest with him.
 
“I was surprised that he kicked me the entire time I was assessing him.”

“What jumped out at me this time around really was his inability to focus and stay on task.”
“He was rocking his chair and had his feet up on the desk. I asked him if he could tell me what he was supposed to be doing. He responded, ‘Oh I thought you were going to tell me to get my feet off the desk.’ Yeah, that too, I told him.”
“At one point he just walked out of the classroom without telling anyone.  We found him hanging around the front of the library.”

"His peers really enjoy him because he is always leading such interesting discussions. They love to listen to him. The problem is that it doesn't have to do with what the group is working on."
Huh. 
During the IEP meeting we heard tales of assessment – writing, intelligence scoring, occupational therapy, social pragmatics testing – and stories, some quite entertaining,  some err, concerning, about Finbar.  A total of 9 people sat around the table discussing my son for over two hours until we finally had to call it quits.  I didn’t know whether to thank these people for all of their efforts, or to apologize to them for  holding them hostage for so long.  In the end, Finbar has three new goals on his IEP that basically say that he will behave better with his teacher and his peers.  The well worn rug is still there.


“What Mrs. M REALLY wants for you this year, what the most important thing for her is, is that you work well in groups and with partners. That's what she told me."

“I work well in groups. I always work well in groups.”

Ha!  I thought back to the girl he made cry earlier in the year and to the way he shouts at the kids at his table to be quiet so that they can get table points. 
“Um, apparently not. You have to take responsibility for your mistakes Finbar.  So you need to start being really nice to the other kids in your group or your partners and let them talk about what they want to talk about. Ask them what their opinion is. Take turns. Really listen. That kind of stuff.”

How's he going to remember that laundry list?
“OK.”
Is it realistic to expect 3rd graders to work well in groups? I couldn't even do manage that in MBA school...
 
The next day Finbar returned from school announcing, “Mom I had a really good day. Mrs. M told me so, she said ‘you had a great day Finbar.’” Bless her.
The behaviorists who come to our home have been modeling using great affect when praising Finbar.  I climbed out of my shell and mustered my best cheerleading voice.

 “Woohoo! Great job buddy! That’s what I’ m talking about!  Proud of you bud!” 

 I gave him a high five and went back into my shell.  I  hugged him. He scrunched his face and let out a squeak. “Mom, thank you for affording me in your big tummy for 9 months and for being my mother. I love you.”

4th grade here we come.

 

 

Sunday, September 29, 2013

Minecraft Down the Shaft

I received several loving emails, phone calls and feedback after my last post (you know who you are and I thank you).   I forget sometimes that there are readers out there - however few :). That was a dark time in a dark tunnel on the roller coaster. I couldn’t see the next turn or dip when I wrote that.  Turns out, Finbar and I are zipping around and having fun again after we came out of that tunnel.

A little over a week after that post Finbar is his most chattiest, goofiest, loving self.  WTF? You ask.  Me too. You would think by watching and listening to him now that I grossly exaggerated how bad off he (and I) was when I wrote my last blog.  I find myself second guessing that we were ever struggling so much.  Then I remind myself that most people do not see that side of Finbar or other autistic kiddos, which is one reason I wrote that entry.  It really was that bad. 
600x615xAnti Steve Mod.png.pagespeed.ic.OqzIWCVchC Anti Steve Mod for Minecraft 1.3.2What happened to turn the tides you ask? It was not intense ABA  "fix it" sessions, not extra support in his classroom, not me hitting the bottle (not that I didn’t a few times).    Dahdahdahhhh, it was an 8 day Minecraft de-tox -   it was in fact a DETOX because Finbar was an addict -  that shifted the entire mood of our household.   I am now ready to star in an  episode of "Intervention". 
I've talked to many parents of both neurotypical and autistic or ADHD kiddos, who are having issues with video games and more specifically Minecraft.   To those empathetic parents (by the way I am speaking primarily to parents of boys...girls are probably addicted to harmless games such as Doodle Art and Doodle Recipes, sigh), here is my advice:  Organize an intervention.  It is tempting to use the ipad, especially Minecraft, as a babysitter, a motivator, or to buy you some much needed downtime.  But if like me, your child eat, drinks and sleeps Minecraft or another video game and you are struggling to stay one step ahead of it, your child needs a cold turkey Minecraft de-tox. Not a gone forever, you'll never play again punishment. Just a de-tox, followed by rehab.  De-tox your kid and your life for 10 days and then let me know how you feel.  Tell me what your kids are doing instead of Minecraft (that's the rehab part).  I know, you're thinking "OMG is there ANYTHING else to do at home or in a restaurant or at the doctor's office or on an airplane BESIDES video games??? How will I get my cooking done?? How will I be able to watch MadMen uninterrupted???" Those were certainly my fears.  If you are like us, it is probably hard to imagine your child wanting to do much else besides Minecraft, other than to bug mom and make it impossible to get anything done. 
Before detox,  Minecraft bought me HOURS of time in many ways, especially on weekends and while I cooked dinner.  Not one to send my kids to a bunch of all day camps in the summer, there was a lot of time to fill. “It’s a game of survival skills.”  I justified to myself the digital babysitter named Steve.  “Hey, it’s a socially cool thing, he needs that.” I convinced myself. But as I hinted in the last blog, it got out of control.  It is not really cool when ALL your kid talks about with other kids is Minecraft and when he walks around carrying, hugging and talking to a stuffed Creeper instead of real people :(
 Creeper plush. It talks. Who knew? Why didn't I invent this?

Without Minecraft, and more generally ipad games, but mostly Minecraft, gone are the endless arguments and negotiations over “I need more time” or “just let me finish this one thing” or “he played my file” or “you’ve had it much longer than me! (punch) Mom!".   Gone is the spaciness (relatively speaking, we still have trouble finding shoes, homework packets, etc).  I no longer have to listen to incessant monologues and dialogues at restaurants and in the back seat of the car about “creeper strategies” and the like (ZZZZZZZ).  Gone is my daily screaming “Turn that off NOW! You’re late for (fill in the blank.)”   Gone is the crying and the anxiety - “Mom, please don’t touch the ipad.” “Mom, please don’t let Declan play my file while I am at school.”   Best of all gone is that stupid reward chart for ipad time earned that I could never keep up with! It made me feel like a constant mathematical failure.    I realized that those tics that Finbar developed were caused by STRESS.  Our constant arguing with him and his constant worry about Minecraft were STRESSING US OUT TO THE MAX.  Gone is the STRESS. GONE IS MINECRAFT.  It truly was is a game of survival and I SURVIVED!

 

Thursday, September 12, 2013


We are on a loop in the roller coaster. Please read this blog of, (can it really be?) over two and a half years ago.   I don’t do well with writing when I’m heading uphill on the coaster.  I feel downright sick when I am in the loop de loop as I have been for the last two months.  I freeze up with fear, bracing myself for what is coming around the bend just seconds away.  Should I be scared? excited? freaking out?   
Summer was hot but my thoughts were cold. No big long travel adventure to occupy our time and energy.  Finbar did one camp. I found myself resentful of the inclusion process required to sign him up for camp, the anxiety I felt everyday dropping him off and picking him up, and the fear that the rest of my life I would be arranging for him to be “included” in camps, college, the workforce and life.  How does one write about such fears? My hands froze on the keyboard.  Cold.
Finbar did four weeks of swim lessons, 5 days a week.  I went with him every time and swam laps in a lane nearby, willing the exercise to increase my serotonin and reduce my anxieties.  I hovered; gazing in the direction of his practice lane, hoping my goggles masked my spying activities.  As I stood there urging Finbar to get his apology out to his swim instructor 3 days into session, I felt around me the pressure of the normalcy of all the other children, their instructors and parents, and the abnormalcy of my son’s forced apology.  “Sorry for not behaving” Finbar eeked out with a nervous squeak. I gave him a squeezy hug trying to reassure him and myself that he could behave.  Seth said “that’s OK buddy, let’s go have fun.”  I silently thanked Seth’s mother for raising a gracious son.  The pool was always cold, and so was I.  I couldn't write about this.
The son of some friends introduced Finbar to Minecraft 2 months ago.  I want to murder the human being who put this game on Earth.  Minecraft ruled the last month of summer.  Yes, it is a survival game. It is about my survival of this game at this juncture.  Minecraft makes Finbar twitch and yell. We are having a week free of screens  and Minecraft right now.  Life is peaceful without Minecraft.
The noises came back about 3 weeks before school started.  I froze again. How can I write about noises and the distress that they bring with them?  Verbal tics they call them.  They usually associate them with Tourette’s and OCD.  How can I write about facing that possibility?  No cause they say, but the cause is obvious to me: Stress. Most people get a headache when they are stressed. My son gets tics. He has outbursts.  We’ve had a lot of spills around the house. His hands keep twitching.  His body keep jerking.  My mind searches for ways to fix this, it freezes with incapacity.  I can’t write about this.  It hurts too much.  Now we are upside down going backwards in the loop. I am scared stiff. Too cold to write.
When I turn to the only help I know right now, our behaviorists, the politicians have gotten in the way and threaten to cut off our services or at least make us pay the $700 a month the therapy costs.  Screw liberal policies. They do not help kids like mine or struggling mothers like myself no matter what they say.  I thought kids with disabilities qualified as the "little people" that they watch out for.  We’re apparently too white and middle class to ask for help, even though my son has outbursts and verbal tics.  Even though I am sick to my stomach with worry.   Sorry, we need your tax dollars to help other folks whose kids don’t speak English well.  “We’ll probably have the FBI at my door if you facebook about that”, my husband says. So I don’t write about it.
Jerk.
 
My son has been crying a lot, I have been crying a lot. But I am writing again. I couldn't make it to writing class today, so I am writing this.  I have been writing a book about hope.  I don’t feel very much hope right now.  Without hope it is hard to write. I will write again and I will hope again, I know this.  I have been on this roller coaster before.  It will happen when those darns tics go away, when Finbar finally joins swim team, when we find a straight track...

Sunday, July 7, 2013

Summer on the Fringe


I have started and not completed several blog entries these last two weeks. These days  I have material for a blog several times a day, such turbulent and challenging times with Finbar these are.   Ahh summer.  Summer, and all its glorious NON-structure and NON-routine.   At once freeing, yet challenging. Challenging for any child/parent combo to weather time-management wise, but especially challenging for a child lacking in self-direction and attention skills, one who can only conceive of filling his endless summer days  conquering multiple galaxies in Super Mario, interrupted only by You Tube searches on how to conquer said galaxies.   Summer is such a dilemma for a fringe mom like me.  What to do with a child who only has attention for video games and who does not automatically fit into to the neat and tidy summer camp descriptions that abound in every local freebie publication and every mom conversation by the dozens?     

Moms: “So, what camps is Finbar thinking of doing this summer?”  

Me: “Uh, do you have 30 minutes for me to go through all the what-ifs and hedging bets scenarios involved in determining the answer to that?”   A simple “Um, we’re focusing on swimming this summer.”  thankfully gets me past these conversations.

When I say that I cross my fingers and say three hail Mary’s and get butterflies in my stomach (or is it ulcer cramps?) when I send in a payment  for a summer camp for Finbar , I am not exaggerating.  Anxiety consumes me when I hit “send” (I register online).   And “send” is only hit after hours and hours spent pouring over options, determining potential challenges, calculating days of the week, hours of the day, cross checked with other potential activities and options.  Not until multiple conversations with Finbar, a consultation with my husband the wallet, a full blown pros and cons, risk assessment, worst case scenario, disaster preparedness plan is executed.  Only then, do I hit “send”.   And still, I get heart palpitations. You see, at school, the parents and kids know Finbar.  In summer camp, it’s a crapshoot. Who knows who will be there and what they might say or think or do when Finbar elbows another kid or tells unfunny fart jokes?    
Summer Activity Guide
Will he fit into one of these??
I am learning by trial and error how to reduce my summer camp anxiety to manageable levels…forget sports altogether (hard to believe I actually considered that an option a year ago – duh!);  go for areas of high interest and engagement such as circuit crafts; go through Parks and Rec  programs, which provide aides for people with disabilities; half-day camps only.  Still, as I fill out the paperwork to get the aide, sit in on a meeting with 5 members from Parks and Rec to discuss MY child and a strategy for ensuring “a successful camp experience”, as I walk Finbar to class on the first day, greet the instructor and Finbar’s aide with a knowing smile that says “good luck and I am trusting you to deal with my unpredictable kid, thank you very much and have a great day.” I find myself ANXIOUS. I watch the hours tick by and wonder what is going on in his class.

I read and learned a long time ago that people prone to anxiety become control freaks (you know who you are).  Control reduces anxiety.  This of course sounds nothing like me; nevertheless,  I decided to TAKE CONTROL of my summer camp anxiety and drum roll please….dah dah dah DAH….CREATE MY OWN CAMPS!

Camps ONLY for kids with high functioning autism, ADD and Aspergers.   In essence, I am going to embrace what is and I’ve never felt more passionate about embracing my child’s autism.  And what is, are a bunch of fringe kids like Finbar whose parents struggle to find summer and enrichment activities that do not require intense social interaction, structure and downright inhibition of what comes natural to them – asking too many questions, needing lots of personal space, invading personal space, making weird noises, bouncing around the room, and generally being and acting weird or inappropriate one minute, normal the next.    I don’t want my son to have an aide anymore to “fit in”.  I just want him to enter a room full of summer campers and be OK the way he is!   


Now THIS looks like a "successful camp experience". Unfortunately it is in N. Carolina :(
When I googled classes and camps for kids with Aspergers in our area, I found that there really aren’t any.  The ones that do exist are therapeutic and expensive and usually mix kids with different disabilities and different levels of disability.  Finbar would wonder why he is in a camp with kids who are in wheelchairs or who have cognitive delays.   I just want my son to be welcome and comfortable and I think other parents of Aspies aspire to the same thing.  I/they don’t want to have to fill out paperwork, sit in on meetings with camp managers, manage the camp instructors' expectations, and pray the other kids don’t eat my/their child alive (or vice versa).   My idea is to offer after school classes and school break camps that cater to the intellect and interests of these kids like Finbar – technology, gaming, web design, math, science, robotics….  And if they get some social skills out of it, GREAT.  
So I put an ad on craigslist for potential  instructors and was astounded by the number of freelance techies that VOLUNTEERED to help provide classes.  Who knew? It would seem that these tech folks feel very strongly about helping this particular set of kids and bringing technology to young kids.  Gotta love the geeks.  Bill Gates is an aspie, yes?  When I asked Finbar if he would like to do a class learning how to design his own video games he replied, and I quote,  “Huh? Yes!  Please mom! Please! Please! Please! sign me up for a game design class. Please! Please! Can I? Sign me up!”  On top of all this, his Space Adventures Class, complete with aide, was cancelled this week due to low enrollment.  I am finally starting to relax…


 

Wednesday, June 19, 2013

Aloha


We’ve been in Hawaii for a week. That explains my absence from blogging, ‘nuf said.  A doctor once told me regarding my son’s autistic perseverations, “They really rule the roost don’t they?”  Indeed, they do.  This Hawaii trip is proof in the pudding.  For two years Finbar has been insisting that we visit a Hawaiian volcano, as if our lives and happiness depended on it (his certainly did), or as if somehow I was denying him his bucket list if I didn’t book a trip yesterday already.   As I type I am in a rental home situated inside the Hawaiian Volcanoes National Park.  That’s right, I caved.  I often console myself regarding Finbar’s perseverance and my succumbing to it by telling myself that he will make a great lawyer or salesperson someday.  I’m not sure which one is worse, but as long as he makes $$ and buys me a nice house for retirement in Hawaii where he can visit me and the volcanoes anytime he wants, I'm OK with his talents.  Luckily with this “sale” I am not yet experiencing any buyer’s remorse. But that might be about to change.
Flying over Active Volcano

Asperger types become obsessed with a variety of topics. For Finbar, volcanoes are one such topic.  All things flying are an obsession as well. So what better to feed those obsessions than a helicopter ride over the currently erupting volcano (Hail Mary full of grace, sign of cross)? We are scheduled to do that in 2 hours. Don’t ask how much it costs, but take it from me he really IS a great salesperson and I wish he could take a commission on what we paid for this, err, life changing experience.  Doesn’t matter I tell myself, he rules the roost.  We can check it off his bucket list, mine, Dad’s and little brother’s, too. That is, if we survive :0

 

Saturday, June 8, 2013

I Am Finbar


I bet every child in America brought home (along with two reusable bags full of leftover classroom crap) a “memory book” on their last day of school.  If your child didn’t do a memory book, you are missing out on some voyeurism and good laughs and should demand one next year.  While perusing Finbar’s 2nd grade memory book today, I found a few pages that spoke volumes about his self image including his self portrait at the beginning of the year shown here
 (he didn’t own black shoes or gray shorts so I am not sure who he drew?? And is that a desk or a Clone Wars Atat?)

and his “The Best Part of Me” essay stating in no uncertain terms that “The best part of me is my brain.” The crowning jewel however was his “I Am Poem” where he had to fill in blanks to complete prompts to write about himself. What he filled in is underlined in the poem below. While other kids wrote about seeing puffy clouds in the sky and dreaming about world peace, Finbar chose a more straightforward approach.
 
I Am Poem by Finbar 

I wonder… constantly.

I hear… through both ears.

I see… through both eyes.          (fine examples of literal Aspergerian thinking)

I want…to be a pilot.

I am… Finbar.       (yes you are)

 

I pretend…that I am a pilot.

I feel…everything.

I touch…everything.       (easy there bud)

I worry… about nothing.      (except where your Nintendo 3DS is every morning)

I cry…never.       (except when you need to get your younger brother in trouble)

I am…Finbar.     (yup)

 

I understand…almost everything     (my personal fave).

I say…everything in a nice way.        (err, unless you are  speaking to your mother)

I dream…awesome dreams.

I try…to get better at bowling.          (what? Not school??)

I hope…I get to do Apple Valley Days.

I am..Finbar.             (Indeed you are)

 
I think I made a good choice signing him up for Lindamood Bell’s Creative Writing tutoring next fall…

Monday, May 20, 2013

I'm Addicted to Parenthood


Last night I watched the season finale of Season 4 of the “sitcom” Parenthood. That’s right, I don’t have cable, just Amazon streaming so I am behind the TV curve.  I got hooked on this show the minute it was revealed in one of the first episodes that Max, son of Kristina and Adam Braverman, has Asperger syndrome.  Max was about 8 at the time, same age as my kiddo.  The emotion surrounding Max’s diagnosis in those first few episodes I caught was real, yet wonderfully therapeutic and escapist  for me, as TV  can sometimes be.   I had been feeling pretty good about all things Finbar during that period, yet I would find myself balling my eyes out at some point during the show (and still do, it is pathetic really, but it feels soooo good to have a good cry).  Or, I would find myself running scenes of the show over and over again in my head, inspired by the actions of Max’s parents.  So, periodically, my husband and I  have been sitting together to watch 3-4 episodes a night (we promised not to watch it without the other), bonding over our shared ability to relate to the Braverman’s experiences with Max and his Aspergers.  For anyone who wonders what the big deal is about raising Finbar or any kid with Aspergers is, watch this show. 
Kristina trying to get through to Max. Skittles anyone?

Monica Potter, the actress who plays Max’s mom is my new favorite actress and superhero.  She nails her role as Max's mom portraying her with the grace, fear, sadness, strength , dignity, hope and especially comedic timing and HUMOR that I aspire to.  I know that the Bravermans are not a real family and that Kristina is not a real mom to an Aspergerian, but I don’t care, they so easily could be.  The actors who portray Max and his parents are so genuine  in their reactions to different challenges and situations, many of them very uncommon in a "normal" household,  that at one point I just had to find out how they were pulling this off.  Surely, someone on the writing or production team of this show must have a son with autism.  I learned that there is a behaviorist specialized in autism on the production staff who runs through every scene that Max is in in detail before shooting. They carefully plan out every reaction he has, everything he says, as well as that of any other actors in the scene to make sure that it is authentic. And it truly is.  It is in fact so authentic that every time I see Kristina trying to “get through” to Max unsuccessfully, I cry for her. I cry for me. I cry for other parents like me who are watching the show and relating to it too. (Did I mention that I like to cry a lot during this show LOL?) And when Max surprises his parents with a breakthrough, as in the case of agreeing to shower more regularly washing “my armpits, balls and bum like Dad told me too.” I celebrate too as if it is my own son. Just days before watching that shower scene on Parenthood Finbar bragged to me that he now washes HIS armpits “like Dad showed me to, want to smell them, mom?”  That's authentic.  When Max's parents bribe him shamelessly with stickers and Skittles when they can’t get control of him (we use video games for bribery, err, I mean "rewards"), or when Kristina breaks social protocol with other moms on behalf of her son,  I feel some relief that someone actually knows about this stuff, and that  5 million people are seeing this on TV and are being educated about kids like mine and their families.
The other night, I watched an episode in which Max, furious that the vending machines in his school were removed, decided to run for student council President so that he could bring them back.  His parents were divided as to whether this was a good idea. His Dad Adam was against it believing that Max would be damaged by the students ridiculing him.  His mother, Kristina wanted to support Max and let the chips fall where they may.  She figured that it would be a good learning experience one way or the other for Max.  I put myself in her shoes and agreed with this sentiment in the end. I am learning to let Finbar put himself out there even when I think it means that he may get hurt (more on that in my next blog).  The important thing to understand in this scenario is that Max not only was not popular and had almost no social skills or friends, he also ONLY cared about fixing the vending machine situation, nothing else. He was obsessed and that is all he talked about. Max's sister Haddie volunteered to be at his speech. Just before Max made his speech, the following dialogue transpired. She may as well have been talking to Finbar…

Haddie: You know, Max, there actually are some qualities about you that would make you a good president.
Max: I know.
Haddie: Like, you’re super tenacious, and you’re funny.

Max: What do you mean by tenacious?

Haddie: I mean you don’t give up on things.  You’re persistent, and if you believe in something, you follow through.  And, also, you have a good memory.  It’s like really scary good.

Max: I know right?

Haddie: Do you remember your speech?

Max: Of course I do. You just said I have a good memory (LOL).

When Max got up to make his speech this is what he said:

I’m Max Braverman, (adjusts microphone awkwardly while audience giggles), I’m Max Braverman and I am running for student council present. If elected as president then I will bring back vending machines that used to be in our school. And that’s why you should vote for me. (More giggles, then a long silent awkward pause, then he musters). Also I’m very tenacious. It means being very persistent. I am like this because I have something called Asperger’s. Having Asperger’s makes some things very difficult for me, like looking people in the eye or saying hello.  So I don’t do those things very often. Some things also come very easily to me because I have Asperger’s, like being smart and remembering almost everything. Also it means being tenacious. And so I will be tenacious about the vending machines. Another thing about Asperger’s is that I always keep my promises. So when I tell you that I will bring back the vending machines, you can believe me. Some people say that having Asperger’s can sometimes be a bad thing, but I am glad that I have it because I think that it is my greatest strength. (Audience starts cheering and hollering “vending machines”)

Max won the election. Is that realistic TV?  I think so. Is Asperger’s Finbar’s greatest strength? I am starting to think so..
PS. Parenthood returns to NBC this fall for its 5th season 10/9c...somebody please DVR it for me!

Friday, May 10, 2013

Amazing Grace


T'was Grace that taught my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear
The hour I first believed.
Sunday May 5, 2013
“Don’t worry Declan. Um, you’ll make your first communion one day too and you’ll get lots of presents.  You just have to patient. It took two long years of hard work to get to my first communion. But don’t worry, you’ll get there too.” Finbar’s voice was soft and sincere as he momentarily took his gaze off of the snow globe and turned to look past me and reassure his brother Declan.  We, that is Finbar, Declan, me and Finbar’s Godmother Sheila, were staring somewhat mesmerized at the snow globe that my mom sent to Finbar for his First Communion.  After a long day, just before bedtime it was time to open presents.  The snow globe stood almost a foot high and the glass globe was the size of an artichoke, larger and more beautiful than it had looked in the pictures online that my mom and I studied umpteen times before she purchased it. Inside the glass globe filled with white sparkly glitter and water was a heart shaped statue wrapped in silver threads and inscribed with a poem called The Light Of God.   The inscription engraved on the outside read simply "Love you, Grammy" .  The globe played “Amazing Grace” as the heart inside spun around looking magical.  Along with the snow globe on the dining table where we sat were two greeting cards each with $5 in it and one with $20 (also from "Grammyana Jones"), an Angry Birds space book and several other books, as well as two rosaries – one from Ireland gifted from me and one wooden gifted from the church.  To be sure, a younger brother seeing all that booty his older brother had collected, as well as all the attention bestowed upon his older brother that same day, might be  left a little jealous or wanting.  In moments such as this, when Finbar speaks empathetically as he did to Declan, I am at once an surprised at his unprompted sensitivity and  primarily relieved that he is finally mastering the selfless human task of putting himself in someone else’s shoes-  because THAT is not autism. THAT is the real life, caring, loving, making-your little-brother-feel-better stuff of life. Just a few months prior, Finbar's inappropriate reaction might very well have been to brag about his new things to his brother.  

"Amazing Grace" always brings tears to my eyes, even as I type right now. The song has so many meanings for me, but ever since it was played on bagpipes as my father’s coffin was wheeled to its final resting place, the hymn has become the lever that opens the floodgate of tears that I must  find the strength to shut off whenever I hear it.  This time though, the tears flowed from the realization while sitting all together at the dining table, resting after a slightly nerve wracking half day’s work at church and a friend-filled afternoon complete with retro-themed communion party, that we had come a very long way to get to this place - this spiritual place both in terms of the Catholic Church and in just being a caring human. And the day had been perfect.

As I reflect on the day of Finbar’s First Communion, I am reminded that it is by “Amazing Grace" that he (and myself) made it that far in the Church. As Finbar emphasized to Declan, two years IS a long time to hang in there, week after week in Sunday School following an hour long church service.  Many of those mornings seemed touch and go and then there was the grand finale of a 4 hour Communion Retreat - yikes.   What was I thinking, putting him through that and hoping that he would make it? I wasn’t thinking at all, I was just praying and taking a leap of faith that it would all work out.

I would not have taken that leap 2 years ago were it not for the involvement and caring of three very important friends who, as it turned out, all flew in for Finbar’s big day. I vividly recall driving North on Highway 1 two and a half years ago with the rolling hills flying by savoring a long girl talk discussion with my best friend, Finbar’s Godmother Sheila who was visiting. Whatever monologue I was uttering and my state of serenity were interrupted when she turned to me plainly stating “Jen, you HAVE to have Finny make First Communion. You just have to”, she let out a little chuckle of disbelief at the fact that I was actually considering not doing so.  She followed up with "I'm his GODMOTHER, I have to tell you these things, he's gotta make Communion."  “We’ll see, it's complicated.” I mumbled trying to blow off the gnawing knowledge that God himself was speaking to me through her. I mean I HAD chosen her as Godmother for this very reason right?  The thought of how I was going to make this work and the hypocrisy I felt in myself was a wake-up call.  This  was not just about First Communion, this was about having faith, faith that God could somehow get Finbar through this daunting 2 year process because I felt powerless to do so, fearing humiliation if he were to make inappropriate noises in church (which he inevitably did) or misbehave in class (predictably, he did that too).  And faith about getting back to the Catholic Church that I had been poo pooing for so long, yet following my father’s death and burial had been wanting to return to like a runaway teenager who, after a night spent out in the open, yearns for the comfort and familiarity of her own home, rules and all.   I am a big believer in divine intervention and I saw Sheila's prompting as such.

The other two caring friends, Sheila and Arin, flew in from Denver just  to spend Finbar’s First Communion with us.  As far as I know, they do not share a Christian faith, in fact I believe Arin is Jewish. Yet they felt compelled, even as excited as we were, to see this event through and to share it with me and my family.  Over the past two years as I have written previously (click here for that post), their kind work and support of Finbar and myself have fuelled a faith of a different kind. The faith that Finbar will be just fine, even better than fine.  Sure, Sheila and Arin perform brain integration therapy on my son, but more importantly, they understand and support his needs.  They provide a safe haven for his restlessness and anxiety. They help him. And me.   Their visit was a testament to Finbar's progress and his ability to draw people to him.   They may not be Catholic, but they too are Finbar’s Godparents. People put in his life by God to guide him on the right path.

Finbar made his First Communion in a large class of 35 children, the largest in San Roque church’s history. Dressed in his dark suit, navy blue tie with chalices imprinted on it, and a tiny gold cross lapel pin, he looked the picture of a handsome young believer. In true “autistic fashion” if that is what you want to call it, he kept waving inappropriately at us throughout the ceremony (he was
seated with his class), did not put his hands in the proper way to receive communion and did his jumping up and down stimming routine on the altar while the group picture was being taken. None of this mattered though. None of it was humiliating. What mattered is that he is now a full participant in receiving the body and blood of Christ in the church community. And so at least in one sense, he is no longer On The Fringe.

And Grace my fears relieved.

Friday, April 26, 2013

Haven't Blogged in a While, It's My Mom's Fault, Read on Please...

I haven't blogged in over a month.  There were many things going on in my life - primarily a long visit from my mother, whom I did not want to ignore during the few evenings we had together by sitting in front of my laptop blogging or writing while she watched Seinfeld reruns (this newly minted entry is dedicated to you, mom). Then there was the finishing up of a consulting project that I had been working on, which was part of  a larger effort I have been making to remove myself from the world of living day to day focused on my children and my son's challenges...then there has been a string of volunteer opportunities that I signed up for to occupy my time in case the previously mentioned effort to remove myself from the day to day world of child-rearing is not effective.  Yet here I find myself once again, drawn to write about my child(ren) that I love so much, not even caring if anyone will read this.   I like it much more than the thought of returning to real paid work or being a PTA rock star.  After a several week absence (thanks mom) I returned to my writing class yesterday and into the open arms of my classmates. A couple of classmates told me that they have referred folks to my blog (woops, sorry 'bout the prolonged absence!) and I thought, holy crap what am I going to write about?  The problem is NOT that I have nothing to write about. Rather I have too much to write about that is all things Finbar and life on the fringe.  Every day it seems has presented a "Finbar story" or a "Life on the Fringe" account. They've been firing at me at such a pace that I'm considering carrying around one of those voice recorders in my pocket from now on to keep track of them all.  I thus have a hodge podge thus of anecdotes to share. I'll just start with the most distant one.

Parent Teacher Conferences - You can learn the darndest things about your quirky kid at a parent teacher conference.  Finbar engaged ( I use the term very lightly) me in what was a "student led" parent teacher conference back in March.  I wish someone had filmed this conference to be aired on a reality TV show, Parenthood, or just to put on YouTube for your viewing pleasure. After his teacher went over his test scores with me and he was visibly unphased by how well he did on those (unlike my-trying-not-to-overly-gush self),   I sat at the desk with him while his teacher coached him through what information he was supposed to take me through.  He first sat facing the two of us, messily pushing around his papers and artwork laid out on the desk muttering "um, yeah...this is my work I guess, um, yeah."  He then turned completely around in his chair and stared at the back wall lost in thought. I exchanged a giggle and smile with his teacher at which time she tried to call his attention back to the task at hand, reminding him of what he was supposed to do, and then excused herself to go speak to the other family that was waiting in the classroom (always fun to have another family watching your son behave this way :).   Still amused I tried, "OK Finney, so show me what all this is."   "Um, well, like, it's just, I guess, you know, my stuff, my work." "Uhuh...and is this your letter to your penpal?" "Um, yeah, you can read it I guess, if you want." (he turns back to the wall).  In the middle of correspondence about summer plans was a random sentence stating that his grandpa who lived in New Orleans died in a boating accident.  Just like that, random matter of fact. Then the writing returned to some other topic such as "what is your favorite color?".  Note to self: work on creative writing at home.  I moved on to the art, which was remarkably good for a child who until this year struggled with fine motor skills, still coloring outside the lines. "Wow, Finney, this is really good, you must be proud of yourself, can't wait to frame this." Still facing the back wall,  "Um yeah,
do you want me to show you my math tiles now?"  Something clicked. Out came the student led conference on math tiles..."So you take the tiles and you see you have to make equations that work out of all the tiles like this....wait, that doesn't work...let me figure this out...oh yeah, that's right.... and so here is what level I am on. Would you like me to do a set now? I really want to get to the next level." (works out the math tiles while I watch).  "Make sure we don't leave without showing
Mrs. B so that I can get credit for it." And just like that I realized that for Finbar's type, leading a conference and conversation - not so engaging.  Demonstrating math computations - totally engaging. He's probably never going to lead a sales team, but he might make a great professor.

Living with Intensity - this is my new favorite subject and book title.  THIS is the "motto" of my life with my two kids - LIVING WITH INTENSITY - yes! Finally someone put it into words for me.  How many times have I heard from grandmothers in the grocery store, who upon seeing me interact with my two highly animated boys or, overhearing Finbar recount some moralistic philosophy ("I think we should all go back to horse and carriage to save the earth, so can we do that mom, huh, can we please get rid of our van and get a horse and carriage??" ) offers to me a dose of sympathy "My you've got your hands full don't you?" or, "You sure must have a lot of patience. Keep up the good work mom, they are only young once." I try to explain to people (and to myself) what it is about my children that exhausts me everyday... I mean I
don't work and I have only two children  - how hard can it be right? And finally, here is someone explaining it in a BOOK.  They are INTENSE!  Sometimes VERY INTENSE! And when they are both intense at the same time my life becomes VERY VERY INTENSE.  From what I am gathering by reading this book, the intensity comes from intelligence (phew) but that intelligence comes with a price (tell me about it, I'm mentally exhausted after mulling all the possible life forms in the universe for the umpteenth time, and that is after being asked quite seriously to calculate on the spot how many hours we have until we leave for our trip to Hawaii in 6 weeks because "we just need to know, mom, puleeeez"). 

Cotillion Anyone? - We received a formal invitation for Finbar to join the 3rd grade Cotillion. The
ultimate Life on the Fringe gamble.  Would make for a great reality show "Autism: The Cotillion." 






Chess Anyone? - After a couple of years of trying, I finally saw one of my shallow mommy dreams for Finbar come true this evening (you would think that Cotillion would be my shallow dream, but
that's just plain social suicide LOL).   Finbar participated in a chess tournament (Ok, I admit probably also social suicide).  I have convinced myself that Academic Chess would be the ultimate nerd social outlet for him and that being so bright, he would be good at it.  Alas, while he seemed to have a pretty good time (let's just say there were no tears shed and he enjoyed the free pizza greatly), it was just another friendly yet torturous reminder to not rock the boat in the name of helping Finbar be more social.  A reminder not to force things that I think would be good for Finbar on him. Chess being one of them, me thinks, but time will tell. I paid the price for my obsession in the form of several uncomfortable moments such as "Gee how old is your son? Oh, 8? And he still likes to cuddle in your lap as an 8 year old? That's sweet." Or, after the 5th time Finbar has publically told me in a baby voice that he loves me and has promised to be my baby forever, I feel the odd stares from parents who are wondering why isn't he finishing up the chess tournament like their kids are and instead is pretending to be a baby in his mother's lap. I try to act like there is nothing abnormal about this, my skin growing thicker all the while...eek.  As we left the tournament, I cringed from embarrassment, and the feelings of remorse and worry that Finbar will never have the concentration span to figure out how to beat someone at chess. I must tell myself that it is all worth it in the grand scheme of things. Leave no stone unturned. Try chess, try swim team, try Piano Club, try Space Academy, try whatever he shows an interest in, try anything (except Cotillion that is).



Sunday, March 3, 2013

"OK Mom"

In the closer quarters of the family, where we are interdependent and the temper of one may make the prevailing atmosphere of the household joyous or sad for days together, it is still more incumbent on us to cultivate amiable dispositions and habitual unselfishness. The essence of being agreeable is being like our Master, of whom it is written that, " He pleased not Himself." - The Art of Being Agreeable by M. Sangster
 
I think that if I were to die tomorrow, "OK Mom" are the words I would want inscribed on my tomb. They are my favorite words in the world, bringing peace,  joy and relief to my heart and mind. They relax every bone and muscle in my body when I hear them uttered in response to something I have said, or rather demanded.  “Time for bed now Finney. Finish up your game.”  “OK Mom, I’ll be finished in 60 seconds, OK?”.  Aahhh. Yes! No stress.  

A frequently cited red flag of autism, PDD NOS or Asperger  behavior is a child’s difficultly handling transitions like the bedtime one I just described. That is stopping one activity, in which the child may be very engrossed, and moving on to another, often at the request of a parent or teacher. I’ve seen many ASD kids absolutely meltdown with fear of having to change gears. Face crinkled, head shaking side to side, cry baby voice rising in frustration, fists clenched braced for war.  When the kids are younger, usually the parent just has to pick them up kicking and screaming to move on. When they are older,  parents seem to try a combination of reasoning and mild threats.  Either way, it is just not fun when you child never learns to cope with transitions.
Another Asperger’s or HFA trait is to be very argumentative.  Regular requests are met with  “but why….?” Or “why can’t I….”.  A lot of back and forth ensues and you find yourself as a parent completely undermined as you engage in a power struggle with a highly intelligent human being half your size. The constant debates and antagonistic retorts wear you down and make you downright mad.
Inflexibility and rigidity in thinking and doing is also an autistic trait. Again, as a parent you struggle to make your child see things your way in an effort to get them to come around to a compromise. But the lack of social thinking and empathy these children manifest makes this an uphill battle. They are always right. The way they see the world is right.  The world is black and white. No shades of grey. No flexibility or compromise.  Your request is just not logical, sorry.
I am writing about this, because I was reminded by someone the other day about how impatient you grow over the years as a parent of a child with “issues”, due to constantly having to argue your point or remind your (autistic, ADD, Aspergers) child of whose boss.  You  (over)react to your child with increasing impatience and frustration over the simplest things shutting them down with words such as “I don’t wanna discuss it now, JUST DO IT.” or "If you don't do X, then you are punished from Y and Z."    To outsiders who have no point of reference or who simply have well behaving conforming children (Gawd I despise those parents, j/k)  you just seem like a real asshole talking to your child like that.  They expect you to be able to use good ole fashioned child psychology in order to get them to do what you want.  Or better yet, they expect you to use  reasoning - ha!
It used to be that almost everyday, I wondered with each request if I was going to be cross examined by my son.  I remember being at parties and events worried that I would have to make a request to Finbar, such as "please sit down and eat", and trigger a firestorm of debates in public.   It was exhausting.  Yet, after years of living with these behaviors, we are finally to a point where I get at least 50% if not much more frequently  “Ok Mom” replies out of Finbar instead of  “But why….” arguments.  “Finbar, I know that he took over the toy you were playing with, but you shouldn’t have pushed him. Go apologize”.  “OK Mom.”   “Finbar, it’s time to stop your video game and come and practice piano and math before dinner.”  “Um, OK Mom.”  “Finbar, please stop playing Wii we have to leave NOW because we are running late.”  “OK Mom.”    “Finbar I think that you should let mom finish eating your hot fudge sundae, it look very yummy. “Sure OK Mom.”  :)   This happens a lot now, and it is pure bliss when it does. My life is much easier now because son is more agreeable than he used to be.

I just thought I should briefly write about this, at the risk of sounding like I am on my high horse,  because I know that there are parents out there who must be struggling with this issue of getting their child to conform to simple daily requests or to see another person's point of view.  When I think about how we got here to the “OK Mom” phase, really just one thing come to mind. Brain Integration Therapy (BIT). I’ve written about this therapy before, so I won’t do so again. But there is no doubt in my mind that somehow this therapy triggered that part of Finbar’s brain that tells him “it’s OK to change gears without having a fit.”  Somehow it allowed his brain to understand that if he is agreeable to changing his mind to meet another person’s point of view that somehow that might make Mom, Dad or teacher happy and that feels good.  I’m not suggesting that you go out and do BIT (well actually I may be doing that just a little).  But I AM suggesting that if you are struggling with these issues of inflexibility and argumentativeness, that you may want to take a look at what you are and aren't’ doing and try something else .   ABA did not help us much in this area (although the therapists sure tried).   Nor did behavior charts and rewards, social stories or books, and certainly not punishment.  My suggestion would be to try BIT or a similar applied kinesiology approach, perhaps cranio sacral or brain balancing, that deals with areas in the brain that affect coping skills and socio-emotional thinking - primarily the limbic system.   If you think that such techniques are hocus pocus, then think again.  They may not affect everyone in exactly the same way but chances are that there is some alternative protocol out there that could be the key to getting to your “OK Mom” moments.   And please remember DRUGS DON’T HELP THE LIMBIC SYSTEM - they keep it from learning to cope!