How Much The Cost?

I was pondering tonight the tens of thousands of dollars we have spent in the last 13 years to try to help our children deal with autism.

Direct and indirect expenses.  Conferences on therapies, since we have mostly had to run our own ABA.  Conferences on biomedical approaches (mostly fallen by the wayside.)  All of the travel expenses associated with them.

The trips to therapies-occupational, speech and physical.  The therapy itself often paid for by insurance.  Therapy camp, which has cost us probably 15-20 grand over the years not counting the thousands of dollars for travel expenses which are most likely double that if not triple.

Travel to consultants.  I always say we're an hour from everywhere.  But some of our consultants have been 3 or more hours away.

Special diets, always out of pocket.  Therapy toys for the home, always out of pocket.  7 years of diapers x 2 boys (just glad it wasn't longer.)  Because we felt we were better able to afford it, we didn't ask for Medicaid to cover that, even though we could have.  Supplements, like vitamins (gone now) and Melatonin (mama's little helper.)

Printouts and laminates for PECs.  iPads and hundreds of dollars in apps.

Medications out of pocket when lost or forgotten when out of state and insurance won't kick in for even a few pills to get us home.  $4/pill-of course.  They have us by the short hairs since antipsychotics are not exactly an 'as needed' med.  $50 copays before the kids got MA on waiver.

Locks for our house, windows.  A $4000 fence is coming up, but I will admit to a $500 grant for that.

Books!  Dear god the books.  Enough for a lending library.  Thousands there.

A hundred thousand, at least.  Maybe even 2.

What we haven't spent it on:

sports equipment.  Our kids are not group sports type kids.  And they can't be trusted on a bike alone.  Travels to away games. 

Massive vacations, like Disney. We are just not willing to front thousands and thousands of dollars for something that might fall apart and wind up being a walking around the resort vacation rather than enjoying the amusement park.

A great house or car.  As with everything else, I say "Don't buy anything you would cry over if it gets broken."

And has it all been worth it?

Yeah, I think it has.  Our kids are doing better.  Still autistic, of course.  And I can't think of a better way to spend our money.  We're not McMansion house people or Beemer sorts.  We'd love to have save the money for college.  But we don't know how much of that is on the horizon.

We invested in our kids' futures.  Like so many parents we never wanted to say we left a stone unturned to help our kids reach the max they could.

We'll continue to put our money into their future, where it will get the best return.


  1. Ouch, it is actually so unfair the amount of money we have to fork out. I know that I am very aware of the need to have money set away for my son's future, because he surely isn't going to be able to provide for himself.


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