Just another site

Just Do More

on October 17, 2012

It’s been awhile since my last blog. We had a great summer! I got a really great new job and we did even more than we normally do over the summer like go on vacation, hang at the pool, went back to school and are now gearing up for Halloween. I’ve been trying to attend more educational seminars because I realize that I live my life in happy denial. “If I don’t think about the future, everything will work out just fine, right?”  This has worked for me so far, but I’m afraid as my kids get older, and I invetibly get older (how annoying, right?) I have to start preparing for the future. For my kiddo with autism and hopefully so my daughter doesn’t get stuck with the burden of care for the rest of her life.

The first seminar I went to was about how to apply for state funding for kids with special needs after they turn 18. I will qualify that the things I’m going to write may seem a little extreme, but this is the jist of what I got from this blur of  an overwhelming meeting:  I found out we need to register on a list that quantifies how many people in our state have children with special needs/autism. In order to get funding from the state, you have to enter a lottery. Literally a lottery. If our name is called and we qualify, we will get state funding. The lottery is only run once a year with the hope to maybe pushing it up to twice a year. Does this sound like Hunger Games to anyone? How on earth can aide for those that deserately need it be decided by a lottery? I also found out that to help our case for qualification of benefits, I would need to state that I can’t keep my child safe. This would prove to the state that funding for state programs like housing, etc is a neccessity. Basically, I have to say that I’m a crap mom in order to get my son the aide he rightfully deserves. Awesome :\

The next seminar I attended was with a lawyer that was giving advice on starting a special needs trust. First off, he had pom poms and other props. While I totally appreciate his attempt to make lawyerin’ fun for all as well as dumb it down for us, do I really want legal advice from a clown? I did get a few nuggest from his speech – namely that the state is out to screw our disabled children and we have to do everything in our power to protect them. My time in denial bliss is now over 😦

2 things that both of these meetings had in common were the amount of parents that were there with pen and notebooks in hand, most with their spouse and some even brought their children. All of us were eager to learn and to find the right answers for each of our children’s special circumstances. All of these people gave up time from their already chaotic lives to go and try to DO MORE. That’s all we can do, right?

While my new job is awesome, my insurance is not. We just found out this week that they don’t cover Autism. Like it doesn’t exist. Like – “Oh, we’ll just ignore something that affects 1 in 88 people in America. No biggie!” SERIOUSLY??

Looks like it’s time to DO MORE. I’ve been going back and forth with insurance looking up diagnosis codes that we might be able to use, talking with my doctor and Alex’s therapist, working with the HR team of my parent company and mine, dealing with a benefits mediator and filing an appeal. Meanwhile, trying to figure out how to pay for the therapies that were already completed and supposedly covered. I decided today that my mission this year is to work to get this company to change their minds. THEY NEED TO DO MORE!! I definitely have my work cut out for me, but never tell an Autism mom they can’t – I guarantee they will do more until they can!



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