Possibilities - part one

Whoops! Sorry, I didn’t mean to leave everyone hanging, wondering about the IEP and Nik’s school future.  Life, it seems, wasn’t quite finished doling out the hard knocks.  In a nutshell, my seventy-eight year old mother had a bad accident involving a ladder and a head injury which resulted in the discovery of a mass on her brain.  Yeah, good times!

The upshot is that it’s been a rough couple of weeks as I’ve been helping my father take care of her between chauffeuring Nik to school and doctors’ appointments.  In all, Mom is very lucky and is on the road to recovery.  An MRI this week has indicated that the growth is actually a fairly benign meningioma which is not actually in contact with the actual brain matter.  The imaging gave the doctor a pretty good picture of it and he will monitor it for growth and any symptoms which may appear.

Meanwhile, Mom is progressing on the slow track to recovery and she’s a tad frustrated (and frustrating, to be honest).

So, in the midst of the “fecal maelstrom” that seemed ready to bury us, the rainbows and unicorns began to appear. (No, really, I did not suffer the head injury.  I swear.)

Nik transitioned into his new placement in the state autism program last Tuesday.  This program is at the same school he attended three years ago.  (Long-time readers may recall that we were so disturbed by the situation at the time —what seemed to be an unwillingness to give the supports we knew Nik needed— that we opted to home school instead.  For the record, we do not regret that decision one iota!)  The autism program in our school district was in its infancy then and we weren’t impressed.  Granted, Nik was in a very different place and needed different supports than he now needs.  None the less, the idea of “returning to the scene of the crime,” as it were, really left us less than inspired.

Funny, isn’t it, how time can change everything?

Today, the program is incredibly well-organized and offers significant supports to students and their families.  Nik is currently in a more restrictive setting, that is true, but it is what he needs right now.  He is only one of five students in a classroom which encompasses kindergarten, first, and second grade.  Each student has full one-to-one support and unlimited access to a sensory room, an adaptive playground, adaptive PE twice a week (as well as music) and daily swimming sessions.  Yes, daily.

On top of that, the whole team really made it clear at the outset that they were interested in helping Nik and were willing to make the personal investments necessary to do so.  Before we even had our intake meeting, the speech therapist made contact with the consultant from PRC (makers of Nik’s speech generating device) and arranged for training sessions for the entire team— including a full day, on-site training in early December.  I still get kind of teary thinking about this team of people who want to learn how my son communicates and how to communicate with him as quickly as possible and how to incorporate his speech device into all aspects of his day.  It’s a complete turnaround from our most recent experience.

In the few days Nik has been in school, he has been so much happier and calm.  Sure, we did start him on Abilify in the middle of the week, but the change was obvious even before the medication was introduced.  After his first day at school (and swimming! Did I mention? DAI.LY!?), Nik actually slept nine hours through the night; he hasn’t slept like that more than a handful of nights in three years!  Something about that deep pressure from the water.

Another facet of this autism program which really appealed to us is the fact that they offer respite. We haven’t been able to get respite for years because Nik wasn’t considered “disabled enough” or medically fragile enough for us to need it.  We were told we made too much money to qualify unless I went back to school or work full-time.  Yet, we don’t make enough money to actually be able to afford to pay anyone out-of-pocket.  Funny, I guess parenting and homeschooling a child with multiple disabilities wasn’t enough?  (Political aside: I wonder if the powers that be which make such policies will ever realize that no amount of money in the world can counter the toll of chronic sleep deprivation, stress, and worry which is exacted upon not only an individual but on an entire family? But I digress…)

So, yeah, respite.  Trained respite.  In our home.  When we need it. *hopeful, happy sigh*

Sure, there will adjustments and there will be struggles— for all of us.  But, overall, I feel really good about the change.

The possibilities seem endless.