Tuesday, April 16, 2013

The Saga Ends, A New Chapter Begins



I have not written in a while.  I have needed some time to breathe, re-group, and revive.  But I am back!  If you follow my blog page, or my blog's Facebook page, you probably already know the fantastic  news that I have not been able to stop chattering about for weeks....Nicholas was FINALLY accepted and transferred to his new school!  I was just about to say that it was a long, hard-fought battle that we have finally won, but in the end, I suppose it wasn't really a battle as much as a marathon.  The process was long, tedious, time-consuming, emotionally and physically draining, but in the end, triumphant!

Nicholas started his new school following Easter break.  He has been in his new classroom now for a week and 2 days (who's counting??,) and in that time, my life is all but brand new.  It is very difficult to put into words what this change means for not only him, but for my entire family.  As I told his former district teachers/therapists/paras/administrators today in an email, this school accommodation is literally life-changing for us.  Each day, Nicholas boards the bus at about 8:30 am, and is transported to an ASD-specific pre-school room in a near-by excellent school district equipped with teachers and therapists who have specific training and experience for children on the spectrum. He is only the fourth child in the class (with a maximum allowance of six,) and there are, at minimum, three adults present at all times.  I have had the opportunity to meet the staff there twice now, and I have every confidence that they will have not only the capacity, but the expertise to help him maximize his potential, and more importantly, help him progress in a way that simply was not possible given the limited time he was able to spend in his old school. (of which I will say is also full of capable educators, but unfortunately limited on resources and time....still love those women! Always will!)  They will help him with feeding, dressing, potty training, life-skills, and of course all of the academic skills he should be working on prior to entering kindergarten (like holding a pencil/crayon, following directions, communicating with PECS consistently, etc.)   I could not be more thrilled to have this opportunity for him to be able to receive the attention that he not only requires, but deserves throughout the day.  As much as I'd like to say I could fill in the gap during his day if he remained in a half-day program for the rest of this, and then another year, I simply cannot.  His first week of school, and the past two days thus far, have been an easy transition it seems.  He comes home every day on the bus, around 4:25pm,  with a smile plastered on his face, and as much as I'd like to think that this beaming grin is reserved specifically because he missed me immensely, I think that it has more to do with the fact that he is just generally happier to have had so much focused attention from others throughout his day.  Only time will tell how significantly he progresses, but for now I am 100% satisfied that he is in the right environment for him, and that he will go nowhere but upwards from here.

As a residual benefit to this new set of circumstances, I am finally able to spend some quality time with my younger two children who so truly deserve this of me.  More often than not, in their short little lives thus far, I have been stressed out, busy preparing to load or unload my van with children to  make it on time to our next therapy appointment, or spending whatever extra time I could trying to give Nicholas the attention he so desperately needs to continue his progress.  I have not  had the luxury of really enjoying my youngest babies. It makes me sad when I think about it.  These days are so precious, especially when they are this young, and I have felt as though I have robbed them of their quality time with their mommy, and likewise, I have been robbed of my time with them.  This is no one's fault, but indeed, it is the constant internal mental battle of a special needs parent with multiple children....balance.

 However,  in the past week, we have had a new-found flexibility in our schedule to do things together that we otherwise and previously have not. If I'm being honest, I guess what I'm really saying is that I've finally had the ability and time to simply pay attention to them.  I have been so pre-occupied in the past several months with trying to polish my "armor" for this battle, prove my case for N's educational needs, and basically keep my head above water, that so many things have fallen through the cracks.  ( Should I mention that my utilities were shut off this week because I neglected to pay the bills for Lord knows how long??? Bills, schmills...who has time?? Naw...maybe I should leave that out....)  Anyway, the point is, this little marathon has taken its toll on my family in ways that I could never have imagined.  But for now, the race (this one anyway) is finally over.

This change for us, as a family,  is monumental. I am grateful that we have had this opportunity to let Nicholas shine in an environment that I hope will better suit his needs in the long run. As for little 'ole mom, the guilt I have felt every day since his ABA therapy sessions have ended, and my inability to "therapize" him throughout his now-barren afternoons as I constantly felt I should have been has finally subsided.  The guilt I have carried knowing that I have had to make a choice to focus on his future, versus finger painting or playing games with my younger two each day for so many months has also subsided.  My mind and my heart are in a better place than they were merely a few weeks ago.  Life seems do-able again.  I am enjoying my new days so much that I can't even believe that this is my actual reality.

One part of me feels guilty even saying that.  It's not that I don't miss Nicholas every minute that he is not with me, but I know that he is in a place where his needs can be met in a way that even I, his own mother, cannot measure up.  That's a heavy burden to bear, but that burden is lifted significantly knowing that I at least had the ability to stand up for him, and acquire for him what I truly feel he needs.  I guess I can finally say that I feel proud!  I did it myself...without an advocate, without a lawyer... and without hanging myself first!  (But not without some behavioral out cryings that have warranted the need for professional help...we are all human in the end, let's face it!)  And, of course, this would be an appropriate place to insert the fact that I have had the loving support of my husband along the way. He may not have been on the front lines of this battle, but he listened, gave feedback, empathized, dealt with my "coping mechanisms," mood-swings,  and essentially dropped everything when I needed him to along the way. He too, has been greatly affected by this process, and has held it together when I have not always been able to.  Not everyone in my position has this kind of support in their back pocket, and I could not have gotten through this without him.

So, today, I feel good.  I feel great!  Today, in particular, was a fantastic day!  The sun was shining, the birds were chirping, and I found myself energetic enough to take my "Littles" for a walk this afternoon.  As we strolled down the road, the kids were happy and entertained just looking at all of the surroundings from the comfort of their fancy stroller that I have neglected to use for the past  two summers. I knew Nicholas was in school, learning things that I could not possibly find the time to teach him.   We were not rushed, and had nowhere to be at any particular time.  I felt happy and content for the first time in a very long time.

 As we meandered down the road,  I found myself thinking to myself that these are the moments and the type of joy , that before becoming a parent,  I had always imagined. And for a split second, I felt a twinge of guilt for even allowing this thought to cross my mind.   But only a brief moment later, I found myself also thinking that Nicholas, and all of the struggles that we face together,  brings me moments and joy that I could have never imagined before being a parent.  How lucky am I to have both?

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