Time to Testify

Tomorrow night, hubby and I get to go speak to the chamber of commerce and beg for funding to cover B's therapy. The insurance mandate passed (woo hoo!) but we are part of a loophole and our coverage is still in jeopardy. Can I tell you how much I do not want to do this? I'd rather do just about anything than speak in any type of a public setting. It's just too important not to. Here's my spiel:

My name is (me) and this is my husband. Our son B. was diagnosed with Autism when he was just 2 years old.

We have 2 boys who are 15 months apart. B is our youngest. He was and is the happiest kid you’ll ever meet. His laugh is infectious. But he is not like other kids. At the time of his diagnosis, we were told that he functioned at the level of a 3-6 month old – a full 2 years behind in development. He constantly jabbered but he had no functional language. Not only was he unable to express himself, but he seemed to have no understanding of anything we said to him. In the community, he would bolt with no regard for his safety. One of our most terrifying experiences was when he wandered off at an amusement park and was lost for what was only a few minutes but seemed like an eternity. We were very fortunate to find him nearby as he would not have known that he was lost, could not have asked for help and wouldn’t even respond to his name if called. It was terrifying to have such a vulnerable child and we feared for his future and the future of our family.

We were told by every medical professional we met that we needed to get him early intervention therapy as soon as possible and that it was the only proven therapy to address his needs.

And then we were told that this therapy was not covered by insurance, was very expensive and that we would have to jump through hoops to get it. In as expedited a manner as possible, we were able to get started in intensive ABA therapy. It took 8 months. And in that excruciating waiting period, we tried our only other alternative for treatment which was Special Ed services through the school district where his development stalled at best.

We are now in our third year of ABA and B is not the same kid.  Today, he is fully potty trained and able to perform the same self-care rituals as his older brother. His receptive language has grown leaps and bounds and he can understand and follow commands. His speech is still significantly delayed but he is able to communicate his wants and needs with simple requests and has shown tremendous potential for reading and typing. He has already exceeded his brother in learning sight words and we have great hope for how this can help him find his voice in the future.

We initially used TEFRA (Medical Aid) to help pay for this essential therapy. But when my husband became self-employed, our parental fee TRIPLED to a monthly payment that exceeded our mortgage. His income is variable and my full-time job is taking care of our kids so this is not a sustainable price for our family. I’m not sure that it’s attainable for any family.  We looked to MCHA and for 6 months, we paid the steep TEFRA fee and the MCHA premium AND the monthly premium for our private insurance plan for the other members of our family. After the 6-month waiting period, we were able to drop our TEFRA coverage but we still pay for MCHA and very pricey private insurance.

You can’t put a cost on this kind of benefit. Without it, our son’s future and our family’s future is grim. But we can only sacrifice so much and there comes a point when the money is simply not available. Without MCHA, we don’t have another viable option.

Unfortunately, the Affordable Care Act seemingly makes this coverage unnecessary since our child can no longer be denied insurance because of his diagnosis. We are told that MCHA is going away because we don’t need it anymore. This is simply not true. Insurance companies continue to deny coverage of the ABA treatment we depend on and at this point, the ACA does not cover intensive ABA. Therefore MCHA is still necessary until ObamaCare includes behavioral health treatment.   If MCHA goes away before families like us have other viable insurance, the consequences are very, very high. Without it, the state will have to use Medicaid to pay for this treatment which will cost taxpayers much more and will be unaffordable for many who desperately need it.

But it’s more than money – it’s the future for these kids and their families. And it’s even bigger than that. The state as a whole will be greatly impacted by every child who is denied the treatment that could enable them to become a contributing member of our community rather than a drain on our taxpaying dollars.

Please confirm MCHA’s commitment to cover ABA and other autism treatments until they are included in Minnesota’s ACA essential health benefits set.  The stakes are simply too high. Thank you for your time and attention.

Man V. Food - take 2

We've started up a food tolerance program for B again. The other one fizzled out because he started refusing to try anything and then he had a mystery illness for 3 weeks and we didn't want to mess with him.

But here we go again. We're a week in and I don't want to jinx it but it's going well so far. It's hard core - all or nothing. Here's how it goes:

If B wants to eat ANYTHING, he has to try a bite of something else first (some things he's had before but doesn't eat and some brand new stuff)

We don't offer him food on any type of meal schedule. He has to indicate that he's hungry so we know he's really motivated. Today he didn't eat anything until 11:30 a.m.

He has 5 minutes to eat the bite in front of him. If he doesn't do it, we take away the food he requested. He can have additional chances with new foods to try if he "asks" for the food again.

Last time, we just tried to reserve the really, really preferred things like cookies, cupcakes etc. to get him try something new. But he's a smart kid. He figured out that he'd still get the meals he liked (pizza anyone?) so he could just hold out and refuse whatever we offered.

So now it's all or nothing.  There have been tears. Defiance. Hunger. It sometimes took 3 tries before he ever got the meal he wanted (yes, reheated 3 times at that point). And on Friday, he ate lunch and then never got another thing to eat until late the next morning.

As a parent, it is excruciating to deny your child something as fundamental as food. It takes "doing it for your own good" to a whole other level.

But this is what it takes for B. All or nothing. No easy way out. His will is so very strong. And he won't just do this on his own or outgrow his pickiness the way some (most) kids do. We were on a slippery slope and it wasn't much of a stretch to imagine a day where he ate only 1 or 2 foods. And when it comes down to it, we'd rather have a few days (weeks, months?) of the tough stuff than a lifetime of terrible nutrition.

I'm happy to report that he has been successful with more than 20 attempts - 100% success since saturday. Today, he tried dried pineapple and a banana chip. If we could introduce fruit and vegetables into his diet, it'd be a huge win. We have a LOOOOONG way to go. A long, painstaking journey for both us and the little man.

So there you have it. If I look a little more frazzled than normal, you know why. It's a fun project to tackle now that school is out and we're on "vacation". How's your summer?