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Sunday, January 27, 2013

Psychomotor excitability or Stimming? Giftedness or Autism?

Just when I begin to think that I have it all sorted regarding Finbar, viewing him as a watered down version of Steve Jobs (one can always hope!), bringing in new Applied Behavioral Therapy paid for by the Golden Bear State (gotta milk those Democrat policies!),  finally settling down again into a peaceful groove (I have energy to watch endless episodes of I Shouldn’t Be Alive)…just when I think I have a grasp on all things Finbar, BOOM, something drops in my lap over a nice Italian dinner with friends that gives me more to think and do.  You moms out there know what I mean – no rest for the weary!  My friends who are the brain integration therapists (BIT) that have been working on Finbar for two years used the “G” word as I dined on my Carpaccio.  I got a knowing feeling as I glance toward my husband who was nodding his head, as if in relief.  We have heard it before, but have never  given the “G” word a whole lot of credo because 1) I am not one to make grandiose assumptions about my child’s capabilities (even though blogging about it might indicate otherwise) 2) the state of education in California has such low standards that when the “G” word is used I take it to mean a child can read whole sentences by 2nd grade and add numbers to 20. (That’ll show those Chinese!) 3) It seems that every parent is clamoring to sign their children up for this “G” label.  

GIFTED is the word and label, the label du jour.  It’s a word I have heard tossed around in all manner of ways to describe today’s smart kids or even kids who are, gasp, doing well in math.  Being gifted is very trendy these days. Just as every cool company these days is reducing its carbon footprint, the really neat kids are “gifted”.   Another reason I don’t necessarily like the word gifted is that it haunts me. Back in the day I was described as being gifted by my 6th grade teacher, one chain smoking, gruff voiced, red-faced, potbellied but very endearing Mr. Marsalone. He was yelling, yes yelling, at my parents during a parent teacher conference which I attended shaming them for not having recognized my “giftedness” and scolding them for not putting me into a highly academic private school in town where the kids graduated onto Johns Hopkins and Harvard.  He was yelling “I can’t teacher her! She’s too smart! I don’t want to have that on my shoulders! She’s constantly bored!”  He was right.  I aced my way through school, defeating all 30 of my classmates in sentence diagramming races at the blackboard, earning every possible bonus point that was offered on tests all the way through grad school, and getting kicked out of 8th grade  and high school classrooms and sent to the library to do special projects because “I already knew this stuff” as one teacher put it .  There was always a nagging sentiment in my teachers and I that I didn’t belong where I was.  Not having done as well as I would have liked on standardized tests (no college prep at my high school) nor having attended an ivy league college which I knew I was capable of doing, I did always wonder, what were my parents thinking? Why didn’t they push me more? Why did they let me coast my way all the way through college instead of putting me in a more challenging environment? I had even begged to go to the highly academic public high school that graduated a large number of national merit scholars every year (did I mention that my high school had NO college prep? Unless you consider studying for the nunnery college prep).   I had many theories on that, but never did I expect the reason my Dad informed me of just months before his death.  “They wanted us to put you in this special school for gifted kids, and…I dunno, maybe we shoulda done that honey, but your mother and I just wanted for you to be normal and not be singled out… ya know, we didn’t want you to feel all that pressure”, was his explanation.  What could I say?  Their intentions were noble, but I wasn’t normal and not being in an environment with kids like me did put a lot of pressure on me – to be normal. 

In great irony even though I have been hearing teachers and adults refer to Finbar as gifted, like my parents I am hesitant to push him any more beyond what is the norm.  I don’t want to be “one of those moms” putting a lot of pressure on my child.   I shy away from the whole idea of calling my child gifted these days because it seems that any child with reasonable book smarts ( who is good in math!) whose parents are ambitious or paying attention will be enrolled in gifted camps, gifted courses, gifted whatever , when in fact they are just bright high achieving kiddos who probably fall within the two standard deviations on the IQ test.  But not gifted a la Einstein, a la Stevie Wonder, or Steven Hawkings.  Thus far that is what I have deemed Finbar to be.  Just a bright kid, smarter than I am, maybe even with a very high IQ, a kid with intense curiosities, a large vocabulary and a capacity for memory common to Asperger types.   But my conversation with his Brain Integration Therapists gave me something to think about.

 As I mentioned before Finbar had been very out of sorts during the previous 3 months. So I called in the BIT troops last month and again last week to work their magic on him.   They invited Bill and I out to dinner saying that they wanted to talk to us about Finbar. It seemed to be in connection with my constant malaise over Finbar’s constant posturing - what I call stimming. To me, stimming is the last frontier standing between Finbar appearing to be normal but very bright, and well, NOT normal and very bright.  But it seems impossible for him to stop stimming and therefore appear normal.  There he was a week ago, having volunteered to lead the Pledge of Allegiance at his cub scout pinewood derby night, decked out in gold and blue looking the picture perfect scout and sounding very articulate (a proud mama moment to be sure). When the pledge was over and the pack leader started going over the derby rules, Finbar continued standing on the steps of the stage looking like a marionette, arms flailing in the air, fingers snapping and flicking, goofy look on his face, chin clenched and feet bouncing up in down in different directions - posturing.  You might as well have shone a cinematic spotlight on both Finbar and his parents. Bill and I glanced at each other, shaking our heads with uncomfortable smiles calling “Hey Finney, come down, stop jumping on stage or you’ll fall.” hoping no one would notice. Of course they noticed! They were all lined up facing the stage, sigh.  I have never heard of any behaviorists that could  explain or eradicate stimming. Stimming is like nail biting or shaking your knee constantly while you sit. It is a subconscious act that is releasing some sort of nervous energy. And it is hard to control or break the habit, especially if the person is unaware they are doing it, which seems to be always in Finbar’s case.

But here my friends were explaining that after working on Finbar for two years that they have a different opinion of what his issues are, particularly with respect to his posturing.  Qualitatively, they explained, he appears to them to be gifted. And drum roll here folks…many gifted kids exhibit psychomotor excitabilities. Psychomotor excitabilities are a physical manifestation of over excitability in the brain (posturing!) which is due to an excess of excitability neurons in the brain, extra brainpower if you will.  For this reason fidgety gifted kids are often mis-diagnosed with ADHD (moms take note!).  They have an excess because their nervous systems are not like normal minded or even over achiever ones. They have nervous systems that operate altogether differently, which is why they rank beyond 2 standard deviations on the IQ test.   The excess neurons, or brainpower, must be blown off in some way by stimming or fidgeting or running around the room or any other ADD behavior you like! Finbar always told me that he stims when he is “very interested” or “very curious” about something, i.e. when he is thinking intensely.  

Here was a new way of looking at my child and his quirks if you will.  Stimming and posturing is part of who he is, part of his inner brain workings and therefore hard to control.  Is he gifted? They seem to think so.  His teachers, psychologists and other adults who interact with him seem to think so. But you won’t see me signing him up for a barrage of cognitive tests to “prove” it. I will leave that to the overachievers and for now just be content to believe that stimming maybe part of his giftedness, not his autism.  Why would I want to take that away?

PS: I found this definition of a gifted child. See if it suits yourself or your child. It certainly does mine, particularly the last two sentences :0

The interests of a child with an IQ of 120 are not the same than those of a child with an IQ of 140. They will prefer, for instance, different ways to spend their leisure time. The probability that a child has an IQ of 140 is about one in fifty, so that from fifty children only one may be in this situation. In a school class, this child will probably be the only of his type. Most certainly, his interests and his values will have little in common with the rest of the class.

Friday, January 18, 2013

Sharing is Caring

“WOW, I see that Finbar is still fascinated with spinning things…My God he’s been staring at that spinning toy (a handheld light up toy that spins like a pinwheel) almost the entire time we’ve been talking.  It’s been a long time since Jason played with spinning toys, we’re over THAT phase.  Huh.  Glad we don’t have to deal with THAT anymore.”  In an instant, as these judgmental words carried by Mary’s annoying high pitched voice pierced my ears like nails on a chalkboard, my stomach tightened into a knot of agony, disbelief, insecurity and mostly, mother bear fury. As words on the tip of my tongue, two words that started with “f” and “b”, sprang forth, my yoga training kicked in and,  swallowing those words, I uttered in my best it’s-no-big-deal voice,  “well he just got that toy today, so he’s still interested in it.” A curt and disbelieving “oh  I thought he would be OVER that by now” was her reply and then, “well we gotta get going.”  Off Mary went on her bike with her two sons.  “Fucking bitch.” I let the cathartic words finally come out, wishing she were out of my life once and for all.
When I first started on this journey with Finbar when he was two, I befriended Mary who lived in my neighborhood.  She had a son the exact same age as Finney (Jason) and a younger infant son, Lucas, just a few months older than my infant son Declan.  I was relieved and excited to find Mary. I thought that we had a lot in common and I was eager for a mom friend that I could trust and confide in.  We had just received Finbar’s diagnosis a couple of months before so I was on an emotional roller coaster and needed a good friend.  After a few park meet-ups Mary suggested that we take our boys to the zoo together.  Uhoh.  I knew that bringing Finbar to the zoo and making him behave normally around another child would be virtually impossible.  I knew that it would be obvious that there was something “off” about Finney (for starters he walked around the zoo covering his ears with his hands and took little interest in the animals).  But I desperately needed a friend, so it was a risk I decided to take. Besides, what did I have to hide? I could always just honestly tell her that my son was autistic. I would have to start telling people at some point.  Mary insisted (I later learned that she was very much the insisting type) that she bring her wagon to the zoo so that we could pull our two boys around in it.  Nightmare. Knowing that Finbar would never sit next to another child, and God forbid if the wagon wheels squeaked he would cover his ears the entire time, I told her that was not necessary. She brought it anyway and insisted the boys sit together in it.  When it became obvious that Finbar, ears covered, would have nothing to do with her son and the wagon, I felt compelled to tell her that Finbar had recently been diagnosed with autism, adding that he was high functioning, but that he would not be willing to share a wagon with her son.  I told her quite matter of fact, like it was no big deal.  I was proud of myself for being so brave with my new friend.
Silence fell upon us. It lasted through the elephant exhibit, into the aquatic cave, back up to the sea lion exhibit and finally, on our way up to the playground, some 20 minutes later, Mary spoke again. Up to then, I was thinking Dear God, she wants nothing to do with my son and myself. I guess I freaked her out and she must be wishing that she did not have to hang out with an autistic child and his needy mother. She must be dying to get this playdate over with. Darn, I should have never said anything.  The incredibly awkward silence was broken by words that I could never have fathomed she would use to break that silence.   In a tone that implied no empathy whatsoever she blurted out, “Can you keep a secret?  If I tell you something you HAVE to swear to never EVER tell anyone, not even your husband, NO-ONE. Because my husband and I SWORE that we would never tell anyone, not even our parents because we don’t believe it to be true.... Jason too was recently diagnosed with what they think is autism. But Ted and I do not really believe that. I mean, yes, he has a fascination with spinning things, but he hasn’t stared at a ceiling fan in weeks, and…does Finbar do that?"  On and on she went with the explanations for her son’s behavior. This, as I watched Jason running away from her constantly without so much as flinching when she called his name. Unresponsive, in his own world, spinning his body and seemingly out of control at times.  I was so busy worrying about Finbar I had not paid attention to Jason’s behavior.  But there it was obvious to me that he had issues too. Mary would not let herself see that even if it became obvious to me that she needed that wagon to keep Jason under control. The conversation became a one-sided declaration of all the reasons her son was not autistic as she threw questions at me that, when I answered, only seemed to prove to her more that my son WAS autistic and hers WASN’T.  Listening to her go on and on I felt depressed at the thought that this could be my new world of friends – mothers with autistic sons who don’t want them to be autistic and don’t want my friendship.  Mothers who want to hide what their children are, ashamed and making excuses. Bummer.
 When I got home I felt overwhelmed with sadness for Mary, sadness that she treated her son’s diagnosis like a skeleton to be locked in a family closet.  In contrast, for the first time since Finbar’s diagnosis  I felt relief that I had not hidden his condition from someone. I was not ashamed. I was not in denial.  Hard as it was I was embracing who my child was. I vowed to help Mary do the same. I would still be her friend and I would help her.  Over the following two years I tried to share with Mary information, experiences and suggestions in a show of friendship and support. She reciprocated on a selective basis and never really seemed grateful for my help, always poopooing my ideas and suggestions.  But then she would often turn around and use them anyway.  Over time I realized that Mary also viewed me as her competitor in the race to recover our sons from autism. For her it was a sprint, for me it was a marathon and still is.  And she was MEAN.  Whenever she had the chance, she would point out what great progress Jason was making while silently and sometimes not silently dissing  Finbar (as in the example above). Still, I listened patiently when she called late at night to discuss her latest research and ideas (but her son did not have autism). I continued supporting her because I felt it was the right thing to do.
Eventually, when I had become involved in TACA, organizing speakers and support meetings to help parents with autistic children, I invited her to a support meeting.  Her reply drew a line in the sand for me with respect to parents like her.  She replied, whiny voice with a condescending tone, “Uh, the LAST thing I need right now Jen is a SUPPORT meeting. I don’t need to sit around with a bunch of parents and hear miserable stories. I am doing just fine on my own. Jake is doing FINE”  ‘Nuf said.  You’re on your own now laydeh.  And with that, I resolved to continue my quest helping other parents by sharing my experiences, but I would no longer put my emotional energy into her bottomless pit of selfishness.  I would carry on helping those who weren’t FINE.
In doing so I have met wonderful people (you know who you are) and learned a ton. I think about my former friend sometimes and her vow of silence. It was unsustainable.  She ended up moving away when it came time to put our boys in Kinderdgarten at our local school. Her move was under the guise of taking 6 months off to homeschool somewhere else, but she never came back to town with her family.   I later found out that she had tried to get her son into several private schools here (which seemed silly because we live across the street from a great public school with services), but Jason was rejected by them all.  She never told me that. No, when I had asked what her plans for Jason and Kindergarten were, suggesting that our community school had great support services, her reply was “Jason is FINE.”  I speculate that the thought of our circle of neighborhood friends finding out once and for all that her son had issues  was too much to bear. I am glad that she and her negative energy are out of my life as I wished.   But I hope that her life is more peaceful now and that Jason truly is FINE.
So why am I telling you this? Why is Mary on my mind?  Because last week when I started blogging again, I was touched and validated by friends and acquaintances who expressed actual enjoyment from my blogging.  Perhaps you are all blowing smoke up my butt because you feel sorry for me, and I thank you for doing that, but at any rate, I was very motivated by this.  Over the years, in sharing my story with other moms I am certain that I have helped children and their mothers in small and big ways. Whether it was turning them on to a treatment that truly helped, or turning them away from things that would be a waste of time and energy (such as applying to private schools).  It is truly gratifying to have your words taken to heart and see them help someone.  Today I received an email in my inbox that makes all this bleeding heart writing make sense to me. In a true twist of fate and faith, a mom that was so kind to me in the early days of Finbar’s autism, who ran a playgroup that he and I participated in when he was two, who made Finbar welcome when it was so needed, and who later was actually in a Church group with me and who helped me deepen my faith and draw closer to God when I was really troubled with all that Finbar’s autism meant,  this mom sent me an email out of the blue about her 4 year old son. I hope she will forgive my using an excerpt to drive home a point, but it so poignantly does:
Bobby has autism.

Yes. my boy. my precious son has autism. High functioning, with an incredibly high IQ. Wow.  But--  autism.  There is so much I know about autism. For years I worked with this population. For years I studied it.  Now it’s in my home.  In my life for a long time.  Bringing JOY and pain all in one.

Jen, Isn't that beautiful?  God is all mighty and He shows up in the darkest, truest moments of our hearts. I think back to the hardest of hard moments, and to the lack of bonding I felt with Bobby early on and my love for him now is overwhelming.  Thank you for praying for me and caring so much, it has carried me!!! Even without a lot of contact, you've been such a blessing. I can not say how precious it is to know you understand.  Really, really understand.

Your blog has been a sweet balm to our past few weeks.  Keep writing. Keep sharing.

 Take that Mary!


Monday, January 7, 2013

New Year’s Resolution: Blog

I took a writing course last fall.  I was hoping to gain insights into how to put all that I had blogged about in previous years, plus other Life on the Fringe experiences and lessons learned, into an entertaining and useful memoir.  If you are looking for a funny and insightful memoir on autism NOW, I highly recommend the Journal of Best Practices by David Finch, which I just finished.  Anyway, I was fully prepared and actually expected to be disappointed and to give up on this book idea after taking this course. But there I stood in front of my class at the end of November reading a  draft chapter for a second time in a shaky voice, stifling tears, choked up by the emotion of baring my soul to potentially critical strangers,  a few of whom are published and professional authors.  Reading aloud into a microphone on a pulpit (yeah, only slightly nerve-racking was that) I became very aware of the heaviness of emotion that filled the room.  As audience members dried their eyes, a classmate raised their hand to suggest that my story was one of “acceptance” and that he liked the concept that my husband and I were “lucky in our unluck”.  A gem of feedback it was. Yes, acceptance is, was and always will be - yes!   I turned to my writing prof, a veteran senior editor and well-published author with the brown corduroy jacket with elbow patches and exaggerated facial features of an 80 year old man to show it. I thought of this blog and told him, “but my blog was different. And it is the reason I considered putting this material into a book.  My blog wasn’t as heavy as the material I have been reading in class that is making people cry”.  I added, “it was more lighthearted and that’s the spirit that I want this book to have”.    As he raised his hands behind his head, stretching back in his swivel chair, he plainly stated “Then you need to keep blogging. That is your community. That is your inspiration, so you must continue to blog. To keep that spirit alive”.   Hmph. Not sure I wanted to hear that, for I have long ago abandoned my blog audience. (apologies to those reading and thank you for returning).  But I knew he was right.  The blog is my diary and my audience. And from my diary will come the memoir of acceptance (will I ever get there?).  To add to this,  a highly successful memoir author recently stated that we live in a real time world now. We can record memories and experiences in an instant online via a blog. There is no reason not to take advantage of this when writing a memoir. You don’t have to go back and try to remember  the past, you can record it real time.  OK, then. Here it is. The first entry of 2013 and not to be the last!
So in this entry should I sum up the last two years (do you have a few hours?)?  Shall I set forth my new year’s resolutions with respect to my ASD son (that’s easy, be a better mom)?  Shall I write about the here and now (let’s see, I struggle to decide whether to put my energy and time into a folly of a book or starting a consulting practice (probably even more folly)?   I have put on a few pounds in 2012, oh yes, and it’s been a very rough 3 months with Finbar so we are seeking new behavioral therapies after 3 years off, sigh.  I guess I can just sum it all up by saying that last night I sat in a new local bar in the company of two mom friends, both of which have high functioning kids in my school district close in age to Finbar.  As we sat around, sipping cocktails talking about our kids and families and jobs (or my lack thereof), I realized that my life is not the only one on the fringe and that all three of us were in different phases of life on the fringe.  We had all had ups and downs and knew that we would continue to do so, but were hoping that perhaps we would not. So halfway into my second vodka ‘n tonic with a twist of lime, laughing and commiserating with wonderful lady friends, I realized that yes, I am still living life on the fringe and in doing so would always be in good company and have an audience to share my experiences with J