And that’s something I’ve really been working through this week, mentally and emotionally. Alec is 5 now, and still very much non-verbal. He’s made huge strides, and although he has occasional words they’re still convoluted due to his apraxia. I’ve always limited his use of PECS and communication devices/apps because his therapists thought he might become too reliant on them and was less likely to talk due to usage. But this week I was reading some blogs on tumblr* and many non-verbal adults on there made mention of how difficult trying to talk was, that just trying to form one small word was anxiety inducing and frustrating beyond belief.
So I’ve been very deep in thought about this all week.
I don’t know what to do.
If Alec never talks that’s perfectly fine- I don’t ever want him to think that him not talking makes him less or disappoints anybody- but at the same time I don’t want him to think I’m giving up on him for accepting this. That probably makes no sense, as I’m somewhere in that gray zone that many special-needs moms are in. And by “gray zone” I mean the “you’re perfect and don’t need to change I just want to give you every single tool you could ever utilize to become independent but please don’t think you need to use them for me and I hope I’m giving you the exact amount of support you need” zone.
I wish their were a way for me to know what future Alec would like me to do for 5-year old Alec.
I received a text today from verizon saying I was close to exceeding my monthly data usage. Turns out my husband has had Plants vs. Zombies running on his phone for the last 448 hours.
When I see mums outside of the grocery store I know it’s on! And although pumpkin spice lattes got unlocked at Starbucks this week, I’m not going to get one until september. I eat pumpkin flavored stuff year-round, but something about the PSL is very “autumn-only” to me.
Life is always a little more exciting this time of year. My holiday vacation is approved (I never work on/around Halloween), and my seasonal baking plans are getting finalized. Their’s nothing better than taking a few days off in the end of October, playing spooky movies, and making enough treats to feed all your friends, family, and co-workers.
Today was a great day and it’s about waaaay more than an OMC mug and a few swizzles. I’ve been sick for a few days and today was my first foray into the world for non-mandatory things. I scored these guys at a liquidation sale, and when I went to the craft store to pick up some Halloween stuff I found these:
It has begun!!!
Now I’m siting on the couch with Alec, watching cartoons and waiting for Camren to get home. My parents are bringing dinner over later and I have a fresh pie on the counter. Life is very, very good.
When I was a teenager, if you were into black nail polish and body glitter on your eyes you had to stock up around halloween time. Nowadays you can find that stuff year round. It’s a really fucking good time to be alive.
A sentence I’d never thought I’d write:
I owe United Healthcare an apology.
As it turns out, they want to pay for Alec’s speech therapy. But they’ve been submitting a request for medical receipts/updates to the provider for 6 (SIX!!!) months, and they have yet to hear back. This is a standard thing, where insurance requests updates on the treatment to ensure it’s working, and the provider just hasn’t responded. In 6 fucking months! So a very nice lady at United Healthcare and I hammered this out, she called the provider and got through to who handles this, and they should have these records within the week. And they can retro-bill back through January which should save me literally almost $3,000!!!!
I told the lady that helped me that I honestly think this was the first time I had a phone call to United Healthcare in almost 3 years that didn’t end in tears of frustration. It took a few days and several hours of phone calls, but I’d say it was definitely time well spent. Now I just need to make follow-up calls next week to ensure everything went according to plan.
I’ve spent the last few days spending all of my free time on the phone with the medical system that Alec’s speech therapy is provided through. The long and short of it is they don’t seem to have any record of a bill I’ve been paying on for 2 years, making twice-monthly payments. Suddenly the auto-withdraw from my bank account just stopped, and upon inquiry the several customer service reps I’ve talked to just aren’t able to narrow down what happened. In fact, one of them told me that they actually don’t do twice a month auto-withdraws, they will only do one per month. Um, that’s not accurate. Apparently at some point recently they “switched systems, everyone’s having problems and calling”, but they couldn’t locate which actual account the auto-withdraw was coming from because I literally have 40+ accounts with them. Every single individual month of speech therapy is considered a new account. Alec’s been getting speech therapy for over 3 years, so… Not to mention any other doctor’s appointments within this system, ER visits, hospital stays, etc. etc. So homegirl on the phone pretty much told me she couldn’t sift through all my accounts to find the one I was making payments on because it would take too long. This is a literal account of me on the phone today:
But this isn’t even the best part of my last few days! It has come to my attention that my insurance provider, United Healthcare, is no longer paying for ANY of Alec’s speech therapy! So tomorrow morning I get to call United Healthcare and see why they’ve given up on a non-verbal 5-year old. I know we were paying 100% of the therapy costs towards the end of last year, but I assumed it was because we were blowing through the deductible and that would change at the beginning of 2014. I assumed wrong. And the billing cycle takes so long through the provider and the insurance agency that yes, it really does take several months to discover this kind of information. So not only have we accrued over $3,000 in speech therapy bills this year, at this point it would literally be cheaper to pay for speech therapy OUT OF POCKET than have it run through insurance. Which is what we will do, because contrary to what United Healthcare thinks, this is a NECESSARY and HELPFUL service. So now we need to come up with even more cash up-front because you have to purchase speech visits in a bundle, you can’t just pay for the appointment the day of or anything like that.
I was on the phone for so log this morning dealing with all of this that I literally had my phone on speaker while I was getting ready for work, driving to work, and sitting in the parking lot. And when I finally hung up, maybe 10 minutes before I was supped to clock in at my job, I just burst into tears. Because the system is so broken that neither ABA or speech therapy are provided for my son by United Healthcare. These are massive financial expenses that are accruing every month that are NOT optional. He is making so much progress right now that I wish I could tell every single person at United Healthcare how excited his behavioral pediatrician was at his last appointment. ”It’s like I’m meeting a different child”, she told me. And we’re in this world where the only thing- and literally the only thing- insurance is paying for is part of his occupation therapy. Nothing more, nothing less. I am paying thousands in insurance premiums for a provider who is doing nothing but denying all my son’s services but one.
MEDICAL INSURANCE IS A SCAM WHEN YOU HAVE A KID ON THE SPECTRUM.
Man, I feel like I’m on such a role with treasure hunting that at this point I’m almost bragging. I stopped by one quick estate sale today and got some amazing stuff: something creepy, something Halloweeny, and something (2 things!) pretty.
She’s seen better days but my lifelong love of mannequins took over and I had to have her. She’s resting comfortably in the garage until we can figure out what the hell to do with her.
And my other treats from today:
A halloween blow mold, a wooden bangle, and a Bakelite bangle!! Blow molds can be super pricey if purchased from a collector, so on the rare occasion I find one for dirt cheap I have to snap it up. My beautiful retro/tiki inspired bracelet collection is growing slowly but surely, I’m just holding out hope for the perfect vintage dress to wear them with.