"It is what I make of it"

I recently was sitting at Brockport University getting ready to hear Temple Grandin speak and a mom sitting next to me asks how old my son is.  I sit and think, “Is my son eleven or twelve years old?”  My mind continues to churn, “It is now October 2011 and May has already passed so he is eleven, right?”  I shake my head trying to figure it out.  Later, sitting at my desk, my thoughts drift back to Sam being a tween.  Sam is not home so I shout, “Hey Mina, is Sam eleven or twelve?”  She yells back, “twelve!”  Shoot, no that’s not right.  He will be thirteen next year.  NO!  I’m not ready!  Panic sets in and I put it aside.  The thought creeps back in again and this time Sam is home. I shout from my office because I am too lazy, or just too tired, to get up, “Sam how old are you?” Sam yells back, “eleven, why?” Relief washes over me, “No reason.”  This is a classic example how my bipolarian brain (yes I made that word up) blocks my thinking.  Am I forty-six years old or forty-seven?  Hmmm I can’t remember.

Having a growing child on the spectrum scares me.  I have to think that it probably scares most of us.  I have a hard time saying this out loud because I don’t want to scare the folks that have the little ones.  I don’t want anyone to think that there isn’t a bright and cheery future. “It is what I make of it” is my mantra. 

I have many thoughts surrounding having my young child grow up.  Puberty has officially set in with the future of a sweaty young man needing deodorant looming in the near future. I wonder if he will have school dances and friends to hang out with.

Reading about having a tween on the spectrum doesn’t alleviate my fears. I just finished Chantal Sicile-Kira’s book Adolescents on the Autism Spectrum.  Chantal talks about the education system and the lack of budget money.  She explains how schools spend a large chunk of money on the early years where there is the greatest, “Window of Opportunity”.  I know that the earlier the child receives services the better off that child will be. Does that mean that when a child is a teen and young adult the learning stops?  Are the windows closed and the doors locked?  I can’t even speak about the tracking system in our schools because honestly, I don’t understand it. 

My child is an important individual who deserves to receive the best supports possible. The teen years is when the neurotypical child learns social skills, determination skills, how to navigate systems independently and most importantly, to self advocate.  My thoughts turn to Mina who notified me that she doesn’t want any help on her college application essay because she wants to do it herself.   My child, being on the spectrum, needs to be taught all of these things.  Who is going to teach him?  The answer for me is all of the people that I choose to be on his team that work with him week after week.  The people that work with Sam independently from school are the ones that are going to have the greatest influence.  I don’t have a total negative opinion of Sam’s school; it is just that I have to fight so hard to push the education piece.  I hold on tight to my knowledge that human beings are life long learners.

I look forward to Sam’s future.  I don’t see it as a dismal place with no job and no friends.  There are programs like Project SEARCH that give our kids a fighting chance in the employment world.  I know in my heart that Sam will have a great life.

Definition of Mental

1.a: of, relating to, or being intellectual as contrasted with overt physical activity.

2.a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.