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Tuesday, January 18, 2011

The Roller Coaster of Autism

This is a pretty good semblance of the autism roller coaster. The loops make you feel a little crazy and disoriented.

The heavy and dense scaffolding is a great analogy for the amount of work and energy it takes to climb uphill when dealing with autism.
I have been on this journey for 5 years and I still haven't grown comfortable riding the roller coaster of autism with my son.  I've been hanging on while climbing the hills, getting to the top bursting with excitement at Finbar's progress, with him next to me and both of us grinning ear to ear, relishing the view from the top - only to then realize that what goes up must go down and that we are heading very fast toward the bottom and it looks like we are going to soon hit hard ground.  Fear takes over and I cling to Finney.  But then, just as we are about to crash, back uphill we go, or, we take a wild unexpected turn.   Sometimes I get to the point where I think that it's fun to go round and round, up and down, scared and enjoying the rush simultaneously; but sometimes I wish that I could just get off and be done with the ride. Just go buy Finney an ice cream and find myself a nice bench to sit on for a while.  I suppose that this is not too different an analogy than what basic child-rearing of neurotypical kids feels like to many. I just think that the hills are the biggest, the falls the fastest and the turns most furious on the autism child-rearing roller coaster. The autism roller coaster also has a lot of backwards upside down loops too :0  The kind that make you nervous and leave you a bit disoriented after you do them.

So what brings me to this analogy?  Well, just days after Finbar's fabulous turning 6 parties that brought along several days of more mature behavior (see previous post for an account of the view from the top of the roller coaster), we are headed downhill once again and I feel myself lifting off my seat, clinging to the safety bar for dear life and I don't like it.  We started going downhill when we took Finbar skiing at a local mountain over the holidays.  We've taken Finbar skiing about four times now, and we cling to the idea and satisfaction that skiing is truly an activity which both motivates and regulates Finbar.  Therefore we have decided to make it a priority each year to make several ski trips with him in the hopes of instilling all the confidence, motivation and fun that comes with learning a lifetime sport. 

  Alas, I should have known.  Going skiing to a place we had never been before during peak holiday season is not the ideal environment for Finbar to ski or vacation in.  I mean I absolutely shun big crowds, always have, for vacations. Why would I expect my autistic sensory overloaded child to like it?  Suffice to say that once again I was reminded that "environment" is key to success for Finbar. And putting him in an overpacked, understaffed, unorganised ski school is NOT, I repeat NOT, the environment for him.  In my optimism about his good attitude of late, I set him and us up for failure, ignoring my instincts and putting him into a group lesson on one of the busiest days of the week. I mean, "duh Jen".  I did not know whether to laugh or cry as we watched from afar as Finbar berated his ski coach over and over again for not taking him on the chairlift immediately. He kept pointing at the chairlift and yelling at the guy.   He has skied from the chairlift the last few lessons that he had. There was no way in his mind that he is doing a "magic carpet" again.  Bill and I walked away, clinging to my cell phone which we just new would ring any minute with the ski school saying "please come pick him up and take your money back".  I sucked down a beer at the overcrowded bar and tried to relax.  Well, the long and short of it is that he made it through the lesson.  When I asked him how it went, he said that he liked it but not the coach.  When I pressed him why not, his reply was, "Uh, I don't wanna say. Because then we'll get into a long conversation about it, so I don't wanna talk about it."  OK I can read between the lines.  'Nuf said, I thought, consoling myself that he had at least made it through the entire 3 hour lesson.
Finbar heading straight toward a kid, fully expecting this kid to move.
  The next day, Bill decided to ski with Finbar and see if he could make progress. It was painful. Finbar skied well, but it was painful for Bill, so out of sorts was Finbar the entire day, yelling and barking at Bill the entire time.  So much for father-son quality time.  Then the 3rd day we went sledding. Us, and some 1,000 Los Angeles residents went sledding together (the ski mountain is close to LA).  Well, did I mention that Finbar does not do well in crowds LOL?  After chewing  out about 25 people for getting in his way and two time-out trips back to the car, we packed it up and drove back to Santa Barbara, a bit beaten down, and I, anxious about the start of school and what that would look like with him behaving this way. Fearful of hitting the ground.
"Uh, can you move PULEEZ?? Hey, why aren't you listening to me?!? MOVE!!
 The first week back to school Finbar was near perfect - whaaaa?? Then I remembered "environment" is key. School is structured, predictable, comfortable, familiar. Negotiating space on an unknown sledding hill with hundreds of people - not comfortable and familiar. We were heading up the hill again :)

So when during this week of calm, I was reminded by a mom friend that Finbar was invited to her daughter's kids-only birthday party (this is the mom of "K" in previous blogs) I felt a little unsure, but mostly confident and hopeful that Finbar could behave on his own at this party. After all, he had been an angel at school that week and he was well, "6".

When I picked him up from the party I asked the Dad how it went.  I was met with a little hesitation on his part and so I proffered in a hopeful but heart sinking way, "mixed reviews?".  "Yeah uh, well he had a little trouble.....he peed in our backyard."   (OK Jen, keep it together).  "Oh, God, sorry. Uh, he does that sometimes, can blame his dad for that heh heh (sorry Bill I didn't know what to say, ugh)....Did he know where the bathroom was? I told him to make sure he knew where the bathroom was before he came over".   To which the Dad replied "yeah, he knew where it was. The thing is that he peed right by the tent, like practically on it".   (OK, now I can go home and slit my wrists).  "Oh, OK, I'll have to talk to him about it...Thanks for taking him on anyway. heh heh."   Silence. 

Wow, that was a pretty fast loop de loop :0

Then we had a birthday party this week for my father-in-law's 75th birthday.  It is never easy to plan family gatherings in a way that works with Finbar's issues.  And because he very often behaves near normal around family, it is hard to convince them that he has real issues when it comes to events like this.  This particular event, against my instinct and volition, occurred on a school night.  I just had a feeling that this would not be a good thing for Finney.  The party got him particularly amped up after a fairly calm week.  He was difficult to get to bed, even though it was late. He ate chocolate cake and ice cream. I big diet no-no, but I caved.  I braced myself with the roller coaster safety bar as I left him thrashing himself to sleep in his room that night, hoping the morning would ring in peacefully. 

The walk to school the next day was fine.  After school, he freaked out and we took another wild unexpected turn on the roller coaster. Verbal tics, little screams and outbursts nearly every minute.  Lots of very loud talking. Non-responsive to questions and statements. Anger. VERY AUTISTIC BEHAVIOR.  At one point he just collapsed in tears crying out "I hate my life, you people are crazy, this life is crazy, I hate this place, I hate this family. I am going to go away and move somewhere else".  Uh, did he just hit the ground hard cuz it feels like I did!?!  That night (last night) his babysitter told me that he was making those verbal utterances constantly while she put him to bed. She left his room and listened at the door. She said he was doing that until he finally fell asleep. It's been several days and still the tics.  He says he can't control them.

The roller coaster.  I don't remember buying a ticket to this ride, can we get off now??? Finbar needs a non-dairy ice cream...

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