Saturday, January 22, 2011

Autism Ain't Cheap

I always knew being a parent wouldn't be cheap. But during my pregnancy I wasn't thinking that I'd be the parent of a special needs child. Those just aren't the things you think about. You think about music lessons and sports or dance lessons and ivy league colleges and all the opportunities you never had.

And then the day comes when your child is diagnosed. Then it's speech therapy, occupational therapy, physical therapy, ABA, home-bases services and center based services.  And unless these services are mandated on your child's IEP - you'll feel compelled to pay for these services out of pocket.  And that gets expensive -- therapists can charge any where between $80 - $300/hour.  Most insurances won't cover these services or evaluations.  Navigating the loop holes of insurance policies is like finding your way out of a labyrinth - blindfolded. (Here's a link how on to get your insurance to pay - Click Me).

Since the diagnosis in 2008, we've spent a lot of money on The Boy.  First we had to repaint his room to a calm "Winnie the Pooh" green.  Then the services begun. Any toy or device that the therapist recommended - we bought.  A peanut ball, weighted vest, scooter board, balance board, hopper ball, a foam balance beam, hand puppets, puzzles, every kind of flash card you can imagine - I could have turned our apartment into a therapy gym!  (Fun and Function is great and inexpensive!

Never mind every book on autism you can imagine. Starting the diet, organic, all natural foods.  Children's books - The staff at Borders know me by now.  And specialized toys for fine motor - every toy needs to have a purpose.  

In 2010 we spent $1,700 on a BCBA social play group.  $6,000 on a private neuropyschological evaluation.  $300 on a special education consultant.  $200 on school applications - for kindergarten placement. I won't factor in the cost of an attorney or advocate - that's for another post. For those not great at math, that's $8,200 on Autism - in 1 year. (We are lucky that some of this money, I was able to get reimbursement from my insurance.  Still, this money was spent unsure if reimbursement was an option.  It had to be done.)   

We're not rich - not remotely. We don't have a trust fund. The husband and I both work regular jobs.  I'm just a secretary. The husband worked as a FedEx courier for 20 years and just recently moved on to something else. We struggle constantly with the mortgage and our bills and live pretty much paycheck to paycheck. And I'm a graduate student and The Husband is ready to return to school also.  I lay awake at night.  Thinking about the financial stability of our future - of The Boy's future.  And I wonder if all the money we've spent is worth it. I have to believe that it is.

I think about the families who take out second mortgages on their homes to pay for therapies or appropriate school placement, or charge attorney fees on their credit cards, take out loans on their 401k plans or borrow from family and friends (I'm guilty of the last two). And I wonder how far I'm willing to go, to make The Boy's life a little bit easier - to get him the services he needs, to guarantee the most appropriate school placement.                  

“Don’t tell me where your priorities are. Show me where you spend your money and I’ll tell you what they are.” -James W. Frick   



  1. I SOOO feel you on this! We've had speech therapists, evaluations, ABA and Floortime therapy, and I can't count the amount of money spent on doctor visits and prescriptions. Just know you're not alone and our kids appreciate it (even if they can't say it).

  2. Yes they are worth it :)



AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.