Tuesday, March 20, 2012

Autism Could Bankrupt Us

Nate got into the Teens in Motion program for this summer.  That's great!  He will have so many experiences and chances for independence.  It's $900.  I know that is reasonable for an 8 week camp, however....autism is very expensive.

We always try to do what is best for the boys.....meds, therapies, and good doctors.  Unfortunately, everything comes at a price.

ABA-
$120 co-pays/week for Nate
$120 co-pays/week for Noah
$60 co-pays/week for Nick

OT-
$20 co-pay/week for Noah
$20 co-pay/biweekly for Nate

Psychiatrist-
$30 co-pay for each boy every 3 months (or sooner if needed)

In-home help-
$11/hour, it varies from 40 to 100 hours a month

Speech-
It's free through the Home Health Care section of our insurance.  Please tell everyone you know to explore this avenue.

Tim and I both teach full-time.  We make too much money to receive help from the government and don't have enough to cover all the expenses ourselves.  When I applied for SSI benefits for the boys, the woman basically laughed at me.  We are on many wait lists for financial help, but are not "needy" enough.  Organizations like Action for Autism are helping.  They pay for one ABA co-pay per boy, per week.  They also covered the $350 for Nate to attend Spring Break Camp.  St. Louis ARC reimburses me $6/hour for the in-home help for up to 250 hours per boy, per year.  I go through those hours like water.

I know there are some expenses we won't have.  I won't be paying car insurance for Nate and Noah.  I also won't be sending them to college.  However, if I had compiled a list of autism expenses since their diagnoses, I think it would rival car insurance and college tuition.

So, gone are some dreams.....bigger house, no.  Condo at the Lake, no.  Tour of Europe, no.  Hello, bigger dreams.....Nate and Noah living in an assisted living facility, yes.

Thursday, March 8, 2012

What's best for kids......

Nate and Noah should not be in a "typical" school.  I know this.  Tim knows this.  Anyone who has met them knows this.

Not all parents know this about their kids.  It's a shame.  Their kids are sitting in a class and not getting anything out of it.  They need an adult with them at all times to "survive" the day.  They are sitting through lessons about writing a 5-paragraph essay.  However, they struggle to write a paragraph and will never hold a job that requires a 5-paragraph essay.  Not all kids need to know the names of all the Presidents.  Sitting in classes and not learning anything is such a waste of their time.  Don't parents know that when you have a special needs child time is your enemy?

Putting kids in an alternate educational setting does not limit their potential.  It does just the opposite.  It opens so many doors for them.  My kids are learning skills that will help them survive the "real world."  They will never be able to write a 5-paragraph essay, but they may be able to hold a job that is commiserate to their ability.  Some things aren't important for everyone to know.

I don't know why parents are so opposed to putting their kids in an alternate educational setting.  I think that one of the worst things a parent of a special child can be is unrealistic.  I have always asked the boys' teachers and therapists to be very honest with us.  Putting our heads in the sand does not help our boys.  Telling a parent that their special child is doing well when they are barely staying in the room or understanding what is going on does not help.  What will these parents do when their child "graduates" from the "typical" high school and does not have any real world skills?

Unfortunately, there is a stigma on "special schools".  When my boys got into the "special school", my friends and I went out to celebrate.  I felt like I had gotten them into Harvard.  For my boys, it is their Harvard.