Sunday, 17 April 2011

• Remembering how it all began

  
  
  
  Learning more and more about the range of symptoms that make up Asperger's Syndrome and the ways that many of those are manifested in my son has been tremendously eye opening, and such a great relief.  For the longest time, I wondered - am I imagining it?  Is anyone else seeing what I am seeing? 
  
  Yet I sensed from very early, probably as early as age 2, that this boy had a very unique way of perceiving and interacting with the world.  His extraordinary ability to concentrate was evident from the moment he got his first Thomas the Train, and watching the way he could play for hours with total absorption, completely tuned out to the world around, I knew there was something different about him.  The way he would hum the tunes from the Thomas videos with perfect intonation and rhythm, just a constant humming along with his play... that was interesting.   As a musician myself, and coming from a family of musicians, it was obvious he had an uncanny musical memory .  That's what I remember most vividly about his toddler and pre-school years... that he was able to focus like a laser on this one area of interest, and no matter what we were doing as a family, his attention remained unswervingly upon his trains.  He would bring them along when we left the house; if we told him to leave them at home, he would smuggle them in his pockets.  He would play with them in the van and quietly (for the most part) on the floor at church.  If the humming became too noticeable we would have to take them away for a while, which would make him very fidgety.  I discovered that even at night he could not stop thinking about his trains, and would find him out of bed, light blazing, lying on the floor on his side, humming while running the trains round the tracks.
  
  His concentration seemed only to increase as he got older, and I reasoned that this ability would surely find good use in his school work.  Oh, how differently that has played out!  When he learned to read around age 4-5, he didn't find anything particularly riveting until he picked up his first Harry Potter book around age six.  He was instantaneously transported, and for the next couple of years there was nothing in the wide world but Harry Potter.  After one viewing of the movie, he was able to hum entire themes from the score - a very musically challenging feat even for a trained singer - as easily as though it were "Twinkle, twinkle, little star."  Sometimes he would hum while reading... if he didn't have the book with him, he would hum even louder, but he usually had a book with him wherever he went.  When he wasn't humming, he was reading aloud, very expressively.  The humming and reading aloud would give him away when he got up in the middle of the night to read.  He would scoot away from the school table while I was working with the other girls and I would find him in his closet, or behind the recliner in the living room, humming and reading.  This would happen over and over until I was exhausted trying to keep him sitting down and working on his "school" work.  I thought, well, if this is a phase, I can think of worse ways for him to not be doing school work... he's reading pretty complicated fare for a 6 year old, maybe it's ok if I just let him read for now, and we'll pick up with the "serious" schooling when this burns out.  I still maintained the hope that I could somehow transfer some of that great focus into "productive learning."
  
  There were some other symptoms that gradually increased, so gradually that we didn't really register them as such, but simply pegged him as "excitable" and "busy".  What I mean by that is restless motion, hand flapping and twitching, a kind of restless bouncing around on his toes when he was thinking about something intently, and inability to sit still that would dramatically escalate in situations where he was highly stimulated.  I remember one particular example.  In 2006 we took a family trip back to Minnesota, and when we came into town we were just in time to go straight to the theater to see my niece, Alicia, performing in the Gooseberry Players' The Magic of Aladdin.  We scooted in right at starting time, and got the last few seats right down in the front row by the stage.  Well, I tell you, what an exciting thing that was!  The lights, the colors, the music, the action, it was so overwhelming for my boy, he was literally bouncing off his seat, kicking his legs, giggling - and while I enjoyed watching his exuberance almost as much as the show, I knew he was probably distracting to others, and I tried the best I could to rein him in so he would not soar right up onto the stage.
  
  This kind of restlessness was so much a part of who he was that it was other relatives who saw him less frequently that commented on seeing a noticeable increase.  And as I began trying more earnestly to do formal schooling, I observed that he easily flew through the first couple of years, acing everything he tried, except for a persistent difficulty with handwriting.  Along with  irregular size and random capitals, he consistently wrote certain letters backwards, and the same was true of his numbers.  I worked with him on it continually and saw almost no improvement.  I recognized that he might be a late writer, having been told by many sources that often boys master those fine motor skills at a later age than girls. I didn't want his lack of handwriting skill to slow his progress, so I often would allow him to narrate his lessons to me.  This worked beautifully and fit right in with his talkative nature.  He had a very good memory and could often quote what he had read verbatim.  He would also read aloud to me, and then repeat what he had just read in summary form. 
  
  At this stage I was pleased with his progress, and thus I did not fight too hard to keep him seated at the table doing busy work for hours at a time.  I kept things flexible - we would work for a while together, and then he would go outside and jump on the trampoline, or read or what have you, and later we'd do some more.
  
  Another year down the road, however, and his progress seemed to significantly slow.  While he still seemed to understand everything he read quite easily, it would take me a whole day sometimes to get him through one page of a workbook.  It wasn't that he couldn't pay attention.  It was that inside his mind, he was constantly focused on something else, so nothing I was doing would penetrate that hyperconcentration.  The constant re-tasking was exhausting for me, and frustrating for him.
  
  His obsession had shifted dramatically when he was introduced to two new interests simultaneously, and his interest in Harry Potter disappeared overnight.  He saw the movie "Indiana Jones" and it became his new focus.  Observing that his interest had shifted, we found that there were Indiana Jones themed Legos, so we got him a set for Christmas.  So then, together with rewatching the movie over and over, he also discovered the Lego Indiana Jones website, and played the games whenever he could on the site, and was constantly humming the soundtrack.  After finding him sitting at a computer in the wee hours of the morning playing the video games we had to put some firewalls into place so that he couldn't access the internet at night anymore. 
  
  As suddenly as he had shifted to Indiana Jones, he shifted again, this time to Star Wars.  It was the same thing all over again, with the rewatching the movies, the Lego Star Wars web site and games, the Lego Star Wars youtube videos, the getting up in the night to try to get on the computer, the building with the legos at all hours, the smuggling them in his pockets everywhere we went... the difficulty acquiring his concentration for anything else.  Again, I was baffled by the apparent contradiction that I couldn't get him to sit still for one page of school work, but, as an example, he could spend nine hours building a 600+ piece lego kit he got for his birthday, following 96 pages of instructions, with no help from anyone else, finishing it at around 1:00 a.m. (I know because he came and woke me up to show me).
  
  In the last year I have really noticed a dramatic difference in his speech patterns as well.  His attention on his area of interest used to be primarily solitary and oblivious of the world outside himself; however more recently it has seemed like he just can't keep it to himself.  He is bursting with information that he has to share (often the same information, over and over).  I take him to and from his karate class three times a week, and he can monologue for 15 minutes straight all the way there, and pick up right where he left off when he gets back in after class and monologue all the way home.  I have tried, as an experiment, telling him that he can talk about anything he wants -- except Star Wars.  He will sit for a few moments in silence, trying to process that.  Then he'll start right up again.
  
  So this is the point we had come to when we finally decided to get some professional evaluation of his status.  And it has been enormously helpful to be assured that these differences we see in our boy are not random, and can be accounted for, and that others have experienced these types of personalities as well.  Throughout all these years, one thing has remained constant, even when we didn't understand certain things about our son, and that is that he is a remarkably happy child.  We have been told by several doctors that the fact we have homeschooled him from the start has undoubtedly been the best possible environment for him, both in terms of his emotional health as well as developmentally.  I know for a fact that I have a great many limitations as a mother and teacher, I have struggled to understand him, I have been impatient at times... but even so, I can see how important it has been for him to have a teacher who loves him and can give him individual attention, as well as the flexibility to work with his attention challenges.  And the self confidence he displays is so refreshing, and I am so thankful that it has not been bullied out of him by school mates who resent and ridicule differences in their peers.
  
  Now as I look back at the journey we have traveled so far, it is so helpful to re-examine what was mysterious at the time in the light of this new understanding, and begin to learn how to best prepare this wonderful boy to fulfill God's unique plans for him in the wide world.
  

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