Mr. Senator, Meet B.

I am not a political person. In fact, I pretty much despise politics. But being a parent often means doing something on behalf of your child that you might not do otherwise. Along these lines, today we visited the capitol: me, hubby, B and one of our therapists (along with at least 100 more concerned parents, therapy providers and kids). This is the 3rd time I've been there since we became part of this Autism club. This isn't a club we ever wanted to join. In it, we are tasked as parents to "advocate" for our children, their services and the already limited funding that is available. I am a parent of 2 and I can not deny that parenting any child is hard. But parenting a child with autism is in a whole other league. Our worries are substantial as it is and our time and resources are limited. We shouldn't have to worry about how to pay for the treatment that has been prescribed, tested and proven to work for so many children. Yet, this is what we face.

Despite the fact that we pay beaucoup premiums for insurance, NONE of B's therapy is covered. We are "fortunate" that the state of Minnesota does currently provide coverage for his ABA therapy but it comes at a cost. We pay a steep monthly parental fee... roughly the equivalent of private school tuition. In addition, together with our provider, we submit laborious paperwork every 6 months so that it can be reviewed and determined whether or not we still are worthy of these services. There is never a guarantee. Right now, we are covered through the end of June but there is strong cause for concern. Blue Cross Blue Shield used to be the one insurance company that covered this therapy but they have pulled out. It begs the question of how much longer the state will continue to provide funding when private insurers don't have to. The costs of this therapy are astronomical. If we were to pay out of pocket, it'd be roughly $12K per MONTH and B is targeted to spend 4-5 years in this therapy. I don't know many people who have an extra $700,000 lying around, do you?

To me it seems like a no brainer. Yes, this treatment is expensive. However, it is evidence-based, medically necessary treatment. And we can't deny that there is a huge population of kiddos who need it. One in 70 boys are being diagnosed - nearly 1% of the population and more than AIDS, diabetes and cancer combined. And kids are recovering. With early intervention behavioral therapy, nearly 50% of kids are gaining typical function... as in losing their autism diagnosis all together. And the vast majority of other kids are making substantial gains and significantly improving their quality of life and ability to contribute to society. We can already see a huge difference in B and this treatment is the only thing that gives us hope for his future. So why are all of these beautiful children being discriminated against?

B needs this therapy and our family needs this therapy. But this is a bigger issue that effects our entire society. At a minimum, we need to ensure that our state funding (MA/TEFRA) does not make cuts so that we can continue what we have today. But what we really need is for private insurance to step up and pay for treatment. There is a bill under review (THE AUTISM HEALTHCARE PROTECTION ACT: House file 1071/Senate file 1020) to require private insurance to provide coverage for care of autism. It would save the state of MN $1.6 MILLION per year. Not to mention the costs that would be saved by treating these kids for a few years vs. an entire lifetime of dependency on special services. I can't even begin to do the math on those savings. See? No brainer.

In a 5 minute meeting, we attempted to convey this to our senator. I'm so glad B was there. I think the sight of our sweet little B playing trains and singing to himself on the floor was far more compelling than anything that could have come out of our admittedly nervous mouths. I'm glad we made time for it and I'm glad we dragged our little trooper all over the capitol all morning to make it happen. Something tells me we'll be doing a lot more of this. It's not something I want to be doing and not something I enjoy. But as we try to get our arms around exactly what it means to be advocates for our child, it's something that we will not be able to do alone and I may be asking for a lot of help.

You win some, you lose some

We're coming up on a month now without a single bite of mac n cheese. He just won't do it. Food is clearly not going be easy for us.

We had a big win today though. Really the best kind too because there was barely a battle in the first place. We decided to get rid of the soft cushy potty seat we've been using since August. I'd like to be able to go places without carrying it around and I'd like him to use the toilet like everyone else. So we just put it away. He got up this morning after being dry all night... have I mentioned that he potty trained at night simultaneously? I'm still amazed by that. Anyway, he clearly had to go. He walked in the bathroom, looked around in confusion and then just walked out. When I told him to go potty, he laid down on the floor and cried. I kind of held him on there to show him what he needed to do and he cried and  tried to hold it but ultimately his body gave out and he did it. And I praised him like crazy and celebrated. Then 4 hours later when it was time to go again (he only goes every 4 hours - amazing!), he just walked in and went - no problem. He even was successful with #2. NO BIG DEAL. Color me shocked. This kid is full of surprises!! We'll keep working on that mac n cheese.

Also this week - he went along to big brother's dentist appointment for "practice". He did just fine there. I was a little worried he would remember the last traumatic experience and try to bolt. But he sat in the chair and stayed during the whole visit. Overall, he was fine but I'm not sure it will help much for his actual appointment when they are actually doing things to his mouth. Side story: in the lobby, big brother made a friend and was immediately telling her all about B. I overheard "that's my little brother. He talks kind of funny but he's learning. He does have some words too". So sweet. And later, he told me that his new friend said B just "has a different brain". So true. So smart. I hope other kids are this wise and accepting.