forever (James' take)

Five days after that mom approached me, trying to recruit us for her family-run group home, James "said" to me (on his iPad typing screen): "Mommy how come that lady talked to you about that stuff?"  After we had a talk, James wanted to hand-write in his "book" aka diary.  It took awhile but he got to what was bothering him.  Two notes, by "water," James means the ocean, and to him, much to my chagrin, "real kids" are neuro-normal children:

Mommy is mean and she isn't nice. Why can't she just take me to the water? Why can't we just go and not do school? Why can't we just have fun all the time like real kids who can talk and be wild? Why can't I be normal too and happy and loved and content? Mommy makes me do school everyday except when Daddy is home or if I am sick, but I want more fun and less work.  Why can't I just be normal kid and not autistic one like everyone else? Why am I different inside and not real to the world? When will I be free? When will I be real? When will I be loved?  When will I be water? When will I be water? When will I be water? Water is to be respected. Why can't I be respected like that? Why can't I be powerful like water? Why can't I be mommy or daddy or Kayla or Kathy? Why am I James, the autistic kid who can't talk or make friends?  What is the secret to being real, being normal? Why can't I just be a kid who can't talk?  Why would anyone want to be me, the autistic kid who is friendless and not real? Why would you want to be my friend when I can't be comfortable in my own skin? What is my good true real mommy going to do with me when she dies and I am alone? Who will love me then? Why am I a problem to be taken care of or gotten rid of? Why can't I grow up and be my own man and take care of myself and not be a big baby? Mommy wants me to control my autism rather than my autism controlling me.  Why can't I be normal? Why isn't life fair? What could one do to win? What will you do to help? Why can't we be free? Why isn't the water really cleansing? Are we not water inside? Why can't I just grow up sweet and happy?

(and then a rather angry abstract happened)

forever

Recently, another mom asked me about my plans for James' future.  I don't know, I replied.  Well, he's eleven now, you have to think about it!  I let her go on about how bad group homes were, the abuse and neglect.  She had a dream plan to create a small, family-run group home.  While it sounded great, the more she went on, the more isolating it seemed.  It sounded so final.  It sounded hopeless.  Just another version of an institution.  Then, James and I got stuck on the West Side Highway, extending our trip to almost three hours.  While he happily listened to CBS 101.1 FM (his current fave), I just thought and stewed and thought:  NO!!!  I yelled at her, in my head hours later.   I think of James' future non-stop.  But in no way am I limiting it now.  I was told he should be potty trained by age 5 or it would never happen.  I was told non-verbal usually can't comprehend much language. I was told institutionalizing him early would be "best" and I should "move on with my life."  I was told he could never use an iPad because he couldn't keep a physical schedule, let alone comprehend it.  Guess what?  In our case, all this advice turned out to be bunk.  What worked?  Another mom encouraging me to get ProLoQuo2Go for James because she knew him and could see that it could benefit him as it did her daughter.  Another mom who is also a speech therapist watching him and realizing he could read and then asking him to type a word in answer to a question, and he did and never stopped.  Who potty trained him?  After our exhaustive efforts?  He did.  He just decided it was time. . . and that time was long after five years of age!  Make all the plans you want in life.  Plans are good.  I am a control freak, I know, I make them non-stop.  To-do list.  Shopping list. Week's menu.  School Itinerary.  Therapy schedule.  But then life steps in.  Someone gets sick.  Car breaks down.  You have a cerebral stroke.  Hurricane destroys your home.  Do your darndest, but at some point, life will step in and alter your reality. As for someone else's life?  Who knows?  We can sketch an outline, make suggestions, present options, be encouraging.  But James' life is his and he is going to make his own freaking future decisions.