Don't Say It

That is James' latest heartbreaking, profound, and shockingly perceptive statement.  I was about to say the word "autistic." Okay.  So I proceeded to list alternate, acceptable terms for his troubles. You're non-verbal but can understand?  Yes. You have motor skill deficiences?  Nod.  And sensory issues?  Check. Exhibit self-stimulatory behavior?  Yes.  Sometimes have a hard time regulating your body?  Big nod.  Oh, and you are apraxic (hinders speech and motor skills)!  But why can't I use that word James?  "Because people think we are stupid."

Do Or Die

I have complained recently about how James' thinks, as Mommy, I am his slave.  I have gotten some perspective and advice from Moms with normally developing kids or with kids who can function in society. And I need it!  I am suddenly at this new life stage after being stuck in an endless loop of the toddler-years.  It is just different than their well-meant, kind words suggest.  I wanted to say "BUT". . . but I didn't, in fear of alienating even more people. Trouble is, I can't stop dwelling on those buts. . .  You see, I had no choice but to immerse myself into James' autistic world to pull him out.  No one else would, or could to the extent he needed it. Oh, I have read about wonderful therapists - we've had some - but it all comes down to money.  If we had it, James' care would be uncomparable.  So Mom - and Dad to a necessary, lesser extent due to making a living for us - dove in. We learned to be a team, to trust one another and communicate without words.  We pushed through not sleeping at night, toilet training, constipation, tantrums, writing, reading and addition.  These milestones took several years not days, weeks or even months. So, when I talk of explaining to my son that I am my own person, allowed to go to the bathroom, to eat, to not be 24/7 on James duty. . . it is not a black and white topic.  For 11 years, I have been THE conduate to the world for him.  It isn't some cute-sie "hard" lesson that I am teaching my child, that mommy is a person too. You see, at age 11, James is beginning to communicate with the outside world.  Can you comprehend the magnitude of such an accomplishment?!  Until this point, only one person in your life has consistently understood you?  Knew your strengths and weaknesses?  Talked to you, not at you, let alone acknowledged your existence?  See, regardless of how insignificant it might seem to a layman, James' current level of increased communication is astounding.  He typed for no one consistently - except me - until this past fall.  Undoubtedly, it had to do with therapists who did not believe he could understand as well as he could (that's another rant).  I believe James is now feeling me scale back.  I wouldn't say it's hard, that is our normal functioning level.  Rather, this next step, of getting James to be (and, most importantly, want to be) self-reliant and independent, is excruciatingly painful. In our special case, it is a sink-or-swim situation.  We will die before James and he will be alone.  That's the bottom line.  James must express his needs, wants, opinions.  He will someday live in a facility, where he will be exposed to various forms of abuse.  His communication is crucial for his future well-being, and perhaps even survival.  This is not about me and my life, my wants, my hopes, dreams, or desires. How petty and small such things seem and I am sorry and, honestly, quite envious, that most can't understand.  James IS my life's grand fucking art project.  My experiences have led me here and my future success and fullfillment in life is based solely on that and that endeavor alone.