Wednesday, July 16, 2008

M is for MONEY

...or lack of it. Not only does autism rob you of your very own child, it also sneaks into your savings account and drains you financially. Most of the therapies for treating autism are not covered by insurance or have limited benefits that quickly become exhausted. They will tell you that early intervention is the key in treating autism, but in order to intervene early, you need money. Indiana does have what is referred to as an autism waiver. It's a good idea in theory, but I know of no one who has personally benefited from it yet. You see, it is greatly flawed. Once you are approved, you qualify for's all paid for by the state. But the flaw is in the fact that the waiting list in 5-7 years long to become approved. So if early intervention is the the state of Indiana, you are just plain screwed.

So what is a parent to do? Well, you cash in your life's savings, your 401K's, you get second mortgages and second do whatever it takes to get the money. After all, how can you put a price tag on your child's life? You can't really. The thing I found out was that all the stuff no longer mattered to me. My dream of building a new home, driving a nice car, having nice furniture and clothing...well, it just didn't matter anymore. I got rid of my SUV and downsized to a nice used more car payment, there was an extra $333 dollars/mo right there. That first year AD (after diagnosis) I did a lot to cut corner's. I cut coupons, shopped at ALDI, went to thrift stores and garage sales and looked to eBay to buy our clothes. I found that I was way more savvy than I had previously given myself credit for.

With the money I was able to save around the home, it allowed us to do simple things like buy groceries and pay a few utilites. I recently went on a quest to see exactly how much money we have spent OOP (out of pocket) for things to heal IVY...I almost was sick to my stomach. We currently spend right at about $1000 a month on therapies, supplements, enzymes and food for her special diet. In the beginning it was more like $2500 a month. So calculate that and we have spent over $100,000 at this point. That was more than a down payment for my new home I dreamed of building. That is the part that makes me sick. That is why autism is such a dream smasher. It takes everything out of you and leaves you feeling exhausted, drained, worn out and flat broke.

For the most part, I never talk about the money, but I felt it was worthy of mentioning here because it's part of the stark reality many families with ASD face on a daily basis. Financial stress is the worst stress there is on a marriage according to experts. I think that is why so many ASD parents divorce. I know first hand of the strain it causes and Ed & I have had many disagreements over money AD...but at this point, we are hanging in there...some days by a thread, but we do what we can to make ends meet. As for my dreams...well I would love the new home and car that isn't from 1997...oh and new furniture, I would love that too...and some new clothes and to get my nails done once in awhile...but you know, in the grand scheme of things...those are just *things* and I can't in no way, now how compare them to the fact that my daughter is beating the odds and she IS recovering from autism.


Lori said...

Hang in there girl!