Structure

Conflicting Needs

  i'm told structure in the life is a good thing.
  MyGuy thrives on it.
  i know Max needs structure in his life.  As a Person with Autism, it helps him feel in control and independent.

  i hate structure.  i like the free-flowing lifestyle.  Maybe i'm just lazy, but i hate following any sort of schedule.
  For me, predictability is knowing i have corn bran, skim milk and oj for my breakfast.  The rest of the day can follow general outlines (no driving in the Mile Square, thank you!) and that's fine.

  Max desperately needs constant schedule and predictability.

  And as The Mom, it's up to me, not The Dad, to put the structure in the life.

Looking Out the Window

  This has been a challenge for me the entire time i've been a mom.  

   Last week's Indianapolis Star  article, Mentally Ill Children Caught in Catch 22 caught my attention.  While Max does not suffer from mental illness, and we are hardly impoverished, i can identify with being unable to provide all the help he needs.  

  Actually Max is doing relatively well.  He's had good teachers in a good school.  Our family includes two birth parents and an older brother who also participates.  There's loving extended family in the area, though we're not exactly in regular contact.  We have church family.  

  Still, i am the primary caregiver.  And at 21 he still needs a caregiver.  And if i were to apply against truly qualified candidates, i would be laughed off the premises.

Resolving the Conflict

  There is research showing it's more stressful to have a kid with autism - well duh, but OTOH, no one knows ANYTHING these days without research.  It's nice to have research to back you up.
   i've found it helps to let Max know what to expect, and yes, to try to do the same thing at about the same time every day.  It would no doubt be mroe helpful if i could manage more predictability, but i do what i can, sometimes more, sometimes less.

  4:30 seems to have become the default time for playing cards.

  Visual schedules are helpful.  We do words and occasionally stick figures, and incorporate choices when appropriate.  Sometimes that backfires: Max might choose "home," which was the next item after being offered the chance to order two or three errands, skipping the errands.  When possible, i honor that, or at least parts of it, but usually i ask him to choose again, covering the not choice parts.

 Ideally, ABA

  Applied Behavior Analysis, at best, is intensive.  Some of Max's teachers have implemented the theory along with everything else they were doing.costs of ABA.
  At its simplest, you observe the child's behavior, see what triggers negative behaviors, what reinforces it, what stops it, and act accordingly.
  In practice, it is much more complicated, especially when practiced with an everyday life.  Because it's something you should be aware of all the time, whether you call it by name or not.
  A brief training course for parents would be helpful - we learned from reading & support group sessions only.  Some families hire therapists to come to the home or go to clinics for the therapy.  A trained ABA therapist is certified, not licensed.  Insurance likely will not cover it, and if the cost is closer to $5,000/yr than $70,000 you are doing well.  (You're also not buying the same product: a few hours a week with an ABA student in training up to a highly qualified professional for up to 40 hours/wk.)

 Example

   So without ABA, we do what we can.  Despite what educators tell us, a student doesn't need to be world-ready at 18 or 21.  Max is not a finished product yet.  Who of us is?

Every child is gifted.  Some gifts just take longer to unwrap than others.