Is it okay that insurance companies can dictate who gets medically appropriate treatment? Is it okay that companies can dictate whether our children's futures are worth it to their bottom line? Is it okay that the rich can say screw it and pay for it anyway but that the vast majority of the population has to deal with the reality that this type of expense is not sustainable?
Why am I talking crazy? Because as many of you know, insurance recently decided that they would no longer pay for Kellen's therapy at what I've previously referred to as "the school"... You know, that magical entity that was supposed to solve all our problems? Everything was absolutely amazing, and then some poor excuse for a human being, who I'm sure was just doing their job (but seriously, how do you sleep at night when your job is trying to find ways to DENY medically necessary coverage to children), decided to go digging and purposely find ways to deny coverage for many of us.
You know what sucks? This is perfectly legal. You know what else sucks? The current national administration has done ZERO to help us out (and have purposely removed the verbage that would help kids like Kellen). The state of Texas, kudos, you did your part, but unfortunately for the majority of Texas residents to receive this benefit, we need a national mandate, state mandates do nothing for a family like ours.
You know what else sucks? We did everything right. Two parents with a home, stable jobs, 4 degrees between us, and we still aren't guaranteed the best healthcare in this country...what the hell!
Is this ok?
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We tried everything...went to both of our companies...who are both still "looking into it" almost 2 months later. We did the math...I tried to bargain with the numbers...but the numbers don't lie. Reality has never slapped me so hard. We thought about fundraising...but that thought didn't last long. How do I ask people for their hard earned money, and then tell them that their donation doesn't even cover a single DAY of therapy without insurance? Even half a day of therapy...even an hour?
Everyone is fighting something, and I greatly appreciate all of you that continue to donate to this cause, and situations like these only highlight how badly your donations are needed. If all of the families at our school had chosen one parent to run a marathon, and raised the funds that so many of you were so awesome to donate, then maybe there would have been a scholarship for my KK...who out of all of those in trouble, is the youngest, and the one who stands the most to gain...but I will find another way for him....because he has me for a mother...and in all of the craptastic roll of the dice situations in this world, I will make this one roll in his favor.
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So reality set in...we were going to be another statistic...another family who couldn't be granted access to what should be the standard of care. And I got mad, freaking pissed. I lashed out at pretty much everyone and everything I knew. It looked like anger, it felt like anger, but at its essence, it was fear. All of the "what ifs" started to drown me. The positive "what ifs": What if in 6 more months he would have been speaking at a developmentally appropriate level? The negative "what ifs": What if he loses all of the progress he's made so far? And I quickly learned that the "what ifs" needed to be more like "WTFs" because neither line of thinking was helping my sanity.
And somewhere in there, reality and reason (and Patrick most of all) took hold, and I knew that for the sake of our family, we had to find an alternative...which in our particular case, meant heading back to public school...and which if the cards could fall in our favor, could be a very reasonable option as we figured out a long-term solution to get him back where he needed to be. But I needed a lot of support and handholding and crying to get to that conclusion on my own...thankfully, we're a family that knows when you need a shoulder to lean on.
The days passed a little too quickly. Before I knew it we'd run out of time with the insurance companies and were sitting in a transition meeting with the school district. We managed to get everything we wanted, which meant that we were back (again, by the grace of God) with the same teacher that we had been so lucky to get this same time last year. If we had any chance of surviving this trauma, this was it.
But first we had to survive our last day at "the school". I had bonded with his therapists...how can you not? They know him in a way that is so similar to how a mother knows her son. They know when he's being funny, when he's being sad, when he needs a little extra love. All autistic children are unique, and many of you may still be used to the stereotypical autistic child that dislikes touch and is mostly oblivious to the world around them (by choice)...that's not our KK. He loves, he seeks interaction, he wants to be hugged, kissed, tickled...you can't be in his presence without being charmed by him. That little smirk and mischievious twinkle in his eyes is what every mother daydreams of when she learns she's having a boy. Autism never stole that from me.
Autism stole my chance to hear my boy call me "mama"...but I fought it, and now I hear it everyday...and just yesterday, I heard it for the very first time spontaneously...as I was talking to E at pick-up time, he came over, put his hand on my cheek, smiled, looked in my eyes, and said "Mama"...and while I believe that this was always meant to be, I know that "the school" helped us get there...gave me that moment that every mother dreams of.
So saying goodbye that last day was more difficult that I imagined. We realized early on that when Kellen is having a hard time, we must say "It's ok" a whole lot...because even before he turned into the parrot he is these days, he would repeat "It's ok" when we'd say it to him when he was upset. It became one of my favorite phrases because it was almost like "pre-language" to me...a sign that we had a chance at developing something much larger...but on that last day, it was so much more.
I made a conscious decision to pick him up that day. It was almost like the closure I needed to allow myself to move forward. I tried to hold it together, but there were so many amazing moms at "the school" that were there for me both in person (at that very moment) or by prior messages that I felt like I was crying for all of our kids. When Kk finally came out with his therapist, we tried to play it cool. Then we both started crying, then the hugging, and then that went on forever...LOL! To the point, where it ended with her saying "It's ok" to me...and then we died laughing...because of course that's what we say to KK, and now what he says to us when he's upset. And in that moment, I wanted and needed to believe that it would be ok. He touches everyone he meets, he gets into your heart and won't let you forget him, he was put on this earth to change the world.
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"It's ok"
Am I okay?
No.
Really, no.
I try to tell myself I am, but at this point, you guys know me, I'm not freaking ok.
One of my favorite random songs is by My Chemical Romance, "I'm Not Okay",
To which my favorite line to recite when shit gets real is "I'm not o-f***ing-kay".
And that's the truth right now depending on the day, on the hour, sometimes on the minute.
This bullshit situation has once again showed me that no matter how hard I try to shelter these kids, no matter how hard I work, that the world will forget them unless I keep making noise, keep making things uncomfortable, keep not being o-f***ing-kay with the status quo...so I keep fighting, keep pecking, keep plotting, keep believing that all of this will make a difference...if not for us, then for the next generation of "us".
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But life moves on whether we like it or not. And sometimes the best thing we can do for everyone around is embrace the change and move forward wholeheartedly. So we did. We're 2 weeks past "the change"...he's doing amazing. We have so much spontaneous language (which is resulting in a ridiculous amount of cookies being handed out), we have happiness (E has said he's been in a terrific mood every afternoon), we have progress (see above, where I heard my first spontaneous "mama" ever). We will move forward, we will survive, we will get there. This is autism. This is not a death sentence. We're not homeless. We're not dying. He's not dying. We're not losing him. This is autism. And we will kick autism's ass.
Autism should be afraid. Because autism hasn't been able to steal my kisses, steal my hugs, steal my "mama", steal my joy. I won't let it.
Because as he tells me often when he gets upset, and Larkin will tell me when she sees me upset...
It's OK...and because of you two...it is...and it will be...OK.
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