What Do You Want?

What do you want?


So many ways to ask that simple question, so many ways to answer it.

I was recently asked this question in a similar form by someone performing an assistive technology evaluation for Kellen (basically trying to figure out what communication tool they should recommend for his IEP…Ipad, lesser technology talk pads, PECS, etc…..like I’ll let them have any opinion besides what I want…but I digress). Anyway, she was “new” to Kellen, so it was interesting to recount all my Kellenisms to her. Some of the questions included…

“How do you know what he’s feeling?”

Hahahaha! That’s funny if you know our boy, his emotions are written all over him. Happy = bouncing, huge grinning, giggling, energizer bunny of a boy; Sad = crocodile tears and a desperate run for my arms; Mad = a very specific whine, which now that it’s partnered with “No!” sounds way more neurotypical preschooler than autism; and honestly I can pinpoint tons more emotions: content, thoughtful, agitated, afraid…he’s an open book, and this is another characteristic that we put in our growing column of “things he’s not supposed to be able to do that he does anyway”.

“How does he let you know his wants?”

Using every form of communication possible. Now, here I am lucky. A year ago, ALL I wanted in this world was to just know what he wanted…and God knows I would give it to him. But now, things have changed. I proudly have to say “No” to many of his physical and verbal! requests…for fear of spoiling him ; ). We almost always know what he wants…he just can’t always have it…but such is life.

And then the biggest question from her on that day…”What would you consider successful communication?”

I’m sure many people have answered “anything” or “using the tool you’ve selected for him appropriately” or “short understandable sentences” but that’s just not me.

I told her “I want to have a conversation with my son.” And that is exactly what I want. I am grateful that we can share an awful lot right now (and more and more each day thank God), but I want to know what he’s thinking. I want to talk about science, I want to answer his “why” questions, I want to debate with him over what he think matters, I want him to talk back to me, I want him to tell me I’m wrong (which actually happened once already…), I want him to complain about his day or recount a funny story, I want him to make fun of me (because let’s face it, it’s pretty easy to do), I want him to make jokes and play pranks, I want him to take up for his sister, I want him to fight with his sister (this happens now, too, but I’d just like to experience the verbal battle…).

I want to have a conversation with my son…as soon as possible…and for every day after that until I leave this earth (and even then I’d hope that he’d keep talking to me …even if I couldn’t answer).

We constantly run around asking him “What do you want?” in order to elicit a verbal response, which we’re getting more and more. Someday…someday soon, I want him to ask me what I want.

Because I’ll tell him that I want the world for him. That I want no limitations for him. That I want every chance I can get for him. That I want love for him. That I want acceptance for him. That I want happiness for him.

You’ve always heard parents tell their children that all they want is for them to be happy. And you truly have to become a parent to understand that. Success isn’t fancy cars, big houses, expensive jewelry, lavish vacations…success is happiness. For Larkin, at this point that means an endless supply of tiaras, her own horse, and a career as a “scientist of the sea”. For Kellen, well I’ll wait until he tells me…but I’ll guess at a career as a pilot or race car driver…with a pantry full of cookies.

But in the end, I am every parent...and all I want is for them to be happy…and for them to tell me so.

Survival

It's no secret that this year has had a rough start...the reasons keep multiplying it seems...

But in the thick of the insurance debacle with Kellen, literally hours after the bottom started to drop out...I got a phone call that has changed my thinking, my mindset, my general perception.

I was in a meeting, and got some strange call on my cell phone from a number that was only 5 digits long. I answered it...and to make a long story short, was completely shocked to find out that it was a production assistant from Live with Kelly and Michael. Turns out that they were having a national competition...for Unstoppable Moms...and unbeknownst to me, my cousin Ashley had nominated me. I proceeded to tell this woman my story, which Ashley had already told them...and then later that night I got a chance to talk to Ashley. And here's the thing...as crappy as things were in that week, I told her that what she had done, had meant everything in that moment...she'd done it weeks before...but in a week when I was doubting if I could ever do enough...knowing that she had done this for me, well, it gave me strength...reminded me who I was, gave me focus. And above all it gave me a fun distraction where we joked at work about me needing to slim down the "camera added 15 pounds" LOL! In a week where everything started with "I'm sorry", this was everything I needed.

I didn't win..obviously. LOL! Even though they asked me if I could be in New York last week no one ever called again. But that doesn't change how much what Ashley did meant to me, still means to me. I saw the women nominated...some I was like "Oh please, every mom I know deals with more than that", and others, like the moms in wheelchairs that I saw, I was like "oh I need to suck it up, they truly are inspirations to what we as moms can do". I'll be honest, just tonight I looked up the mom that won. Mother of 4, dairy farmer, with the youngest child a special needs child...far more severe than us autism parents have ever had to deal with. But what struck me with her story was the lack of outreach. She was a terrific mother, a terrific worker for her family, she did everything for her special needs child...but what did she do for all of the other kids like hers, all of the other mothers like her?...and maybe she does focus on that, but the story didn't.

Regardless, the whole process caused a significant bout of self-reflection. From start to finish. I didn't have the easiest life. For those that knew me growing up, maybe it looked pretty...it was all pretty dresses and bows and perfection...but in reality it was restrictions, irrational fears, high expectations, and unbelievably suffocating. My childhood was anything but normal. Somehow I made it out ok...everything is not always as it seems. And through the support of my parents as I hit my teenage years, I got out...and became my own person. I often remark that Larkin is me, but with so much more confidence than I ever had, she's fearless...but others have said that's how they see me now...and I see that maybe that's who I was all along...

A few good friends of mine have said on separate occasions that I'm the strongest person they know. I don't think that will hold true for their lifetimes, but I'm grateful for the sentiment. The whole "unstoppable mom" process has made me reflect quite a bit on what we've been through.

I never thought we'd have a baby. Everything went wrong. I was that pathetic story that no one even wanted to acknowledge anymore because no one knew what to say. When everything finally turned the corner with Larkin, it was a running joke that we'd name her Miracle (pronounced Mira-clay). I still wasn't confident I'd ever get the chance to be a mother...but I had her, and all seemed ok, and then less than 24 hours after I was released she was back in the NICU with a terrible case of jaundice...not the "oh, she has a little jaundice" situation but a "she needs to be admitted immediately" situation. I find it ironic that she was the one that we worried about neurological impairment...she's a freaking genius...not that Kellen isn't...

So imagine...4 years of trying for a baby, then sitting in a NICU praying for all to be ok. Going home to happiness, and then oops...3 months later, you're actually pregnant on your own.

I've yet to meet anyone with kids closer together than mine...seriously if you know someone, send them my way because I would love to meet them. They were already going to be close together. Kellen was conceived 11 weeks post-partum...the first and only time we...well, you know...it was Patrick's first ever Father's Day...and what a gift! And then he shows up 5 weeks early. I'll never forget that morning...blood, fear, and perfect calm. I had already called the doctor before Patrick knew what was going on. I'd later learn I was in full blown labor all the way downtown, but kept calm and in denial telling myself and Patrick that this was just a preterm episode they could stop. Everytime I hear of women screaming in pain in labor, I'm like...did I miss out on something? I didn't yell, didn't panic, didn't cry, didn't throw up, I was just focused on what I needed to do for them. I never cried until they broke my water with Kellen...and told me I was having a preemie. It was a cry of frustration, not of pain. Pain is nothing...seriously, ask me about the physical pain I've been through in various aspects of life (endometrial biopsy "fishing", cutting the cerclage, marathons LOL!). Physical pain is nothing, emotional pain...I've yet to conquer that completely.

But then there we were...perfection...the infertile couple...with one girl, one boy...how? And then everying started to go not so smoothly...and then I knew...and then everyone knew. Freaking autism. Another battle, another war. Well why not...I'm so good at fighting. So yes, I acknowledge every mom that is doing the best they can for their family, for their children...but I have to push and do more. I have to ask what I can do for every mom, for every family, for every kid like Kellen. So I go to work every day. I push for research avenues that I can pursue that will matter. I write this blog so that moms like me will feel less alone. I'm not just a mom this happened to. I'm a mom that will fight and keep on fighting. I will fight insurance companies, I will fight our own companies, I will fight school districts, I will fight the government. My survival instinct takes care of our family of 4, but it will not allow me to forget every other family like ours.

So I fight, because I am able, because I am equipped, because I, with the right fight...I am strong...and unstoppable...and I thank the people that reminded me of that.

October 2012- In Pictures

I am determined to catch up to current time. So here's October in picture review.

I got to go to the CDC! I have mixed feelings about this place. They seem to send the biggest idiots ever when they need a representative to discuss autism, but this meeting was about lab stuff and those people were cool and smart ; ) I never knew it was so pretty on their campus!

And then I flew straight from Atlanta to Dallas for my little brother's wedding! Larkin was already there with my parents and the boys were still making the drive down with Annie.

Rehearsal dinner (me and Larkin, Larkin and Ashley)

Larkin and Uncle Pete

 And then the next morning Annie and I went to run a half marathon...what? We had nothing scheduled that morning!

After an afternoon of hilarity, stress, and almost missing the wedding entirely, we all managed to get there in mostly one piece. I wish we'd gotten better pictures, but the kids hung on for as long as they could. My parents really cleaned up well ; ) Either way Congrats to my little brother and his new (well 5 months ago is still newlywed status right?) bride!

And yes, that is my brother and Patrick trying to push the truck while Dad steers...and yes, this is after the wedding LOL!

So then we were home for like a week and a half and then I was off to Long Beach for my annual nerd conference....where Patrick joined me a few days later.

Our first time putting our feet in the Pacific....brrrrr!

And then we headed to Los Angeles to run the Rock and Roll Half Marathon! Best celebrity sightings: Will Farrell running the race and Deena Kastor (only runners will know this one) who I saw cruising to the finish line when I was at like mile 7 LOL!

Maybe I'll tackle November tomorrow night ; )

It's OK

Is it? Is it really ok?
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.