On First Days, Hope, and Good People

And high up above or down below, When you’re too in love to let it go

But if you never try you’ll never know, Just what you’re worth

Light will guide you home

And ignite your bones

And I will try…to fix you

Fix You, Coldplay

There are some who would say “there’s nothing to fix, they are as they are meant to be, love them for who they are”. I accept my son, fully, wholeheartedly, as he is, but I will not accept any limitations for him. So with that in mind, I will try to “fix him” until the day I die. It’s not about changing him, it’s about allowing him access to his potential. It’s about wanting so badly to know what he knows, see what he sees, love what he loves.

“The School” has been a huge part of my proposed treatment plan for Kellen. After over a year on the wait list, several small miracles occurred that led to him starting this semester, and while he’s the youngest there right now, I honestly don’t think he would have been ready for this a year ago…but now, he is SO ready.

I was extremely anxious, nervous, excited, terrified as the days ticked down to his start date. That morning I could barely function. Of course, I wanted Patrick to document the day. I expected frustration and a series of bad pictures. Meanwhile, Kellen found the process somewhat entertaining.

New Shoes

And then of course, I am the typical mother cleaning my son’s nose. No buggers on the first day!

Tristan: “Can you check my nose while you’re at it?”

And then we went to the door to head out, and I wanted to try to get a “first day picture”…you know the ones that all the other moms get. I was certain that this was going to be another one of those reality checks…another “moment” that autism would steal from me because of course he wouldn’t look at the camera and if he did he wouldn’t smile and…and then…and then he did what he does best…surprised the crap out of us. I knelt down next to him, he looked right at the camera and started smiling like crazy, leading to me crying like crazy.

Dropoff went well…I held it together until we got outside without him…then I went to Target and cried into a Starbucks while buying completely random stuff. I counted the minutes until it was time to go pick him up. I managed to distract myself by watching “Honey”. I seem to think I dance just like Jessica Alba in this movie (you know, the one time a year I go dancing now)…but I’m pretty sure that’s comparable to me saying I felt like I was running as fast as the Kenyans on TV in the last few meters of the marathon last year…

Finally it was time to pick him up! And here came my happy boy. He was tired that evening…and somehow ended up looking even MORE like his daddy while snuggling in our bed, but he was good.

Lightning McQueen cup = part of the random crap I bought at Target

The next morning brought more stress as I was going to be leaving him with his before/after school caregiver. I am so lucky to have found another autism mom who was willing to watch him and then drop off/pick up both boys together. I was so nervous that first morning, but he just went running into her house smiling. He has made it so easy, and she is an absolute blessing! I seriously pinch myself that all of this is really happening. The school is one thing, but then to find another mother who would not only watch my son but KNOWS autism…you just couldn’t write a better story.

So this week is a week of hope. Of first days that seemed so normal. And of good people making first days and hope possible.

Autism is Like a Cold

I’ve said it before several months back on this blog. It’s probably my favorite way of describing the term “autism”. Our new favorite doctor actually used the same analogy the first time we were in his office, and I knew we’d get along after that!

Saying someone has “autism” is like saying someone has a cold. There is no one cold, there are numerous viruses, bacterial infections, allergies, inflammatory conditions, etc. that lead you to say someone has a “cold”. Multiple routes to the same itchy, sniffly, stuffy misery (can you tell I really enjoyed my cold this week?) but varying levels of severity of that same misery.

And just like there is no one cold, there is no one autism. I’ve had the privilege to meet several other mothers now, along with their children, and these kids are so completely different…but yet also so the same. Our children have had any number of tests, had more experts than we can fit in a room analyze their every move, been poked and prodded…and the answers are all different, but they’re all the same. Our children have “autism”. This includes the Rainman-esque kid rocking in the corner of the room, this includes children that also have some level of cognitive-deficiency (what some refer to as mental retardation), this includes the gifted savants we often hear about, and this includes our KK…who seems to be bit of an anomaly…I’ll need a separate post to adequately describe “Kellen’s autism”…but then again, I suppose this entire blog describes it…

If you ask the medical/scientific community at large, they will tell you they have no idea how autism actually happens…but the general party line is that it’s an inborn error. They usually like to blame the maternal genes…you know, because it’s always the mom’s fault!

If you ask Jenny McCarthy, she’s 100% sure that autism is caused by vaccines and that it’s completely curable (healable, recoverable?).

If you ask me, well I’d be a crappy politician because I sure like to sit on the fence. Wait, would that make me a good politician? Because I think they’re both wrong…and that they’re both right. Ooooh, maybe I would have been a good politician.

You see, I have the precarious position to belong to both “parties”. I’m a scientist, I need facts and theories, I need experiments, I need answers. But I also fit the definition of the “warrior mom” even if Jenny and I don’t see eye-to-eye on many, many points. And here’s where I’m brutally honest, I am completely focused on Kellen’s autism…what caused it…and what’s fixable. I’ve said before that I hope to pursue an evidence-based medicine/science path with our sample set of 1-Kellen. The path that we are on will not work for everyone, some of you may whole-heartedly disagree with what I may say, what I may do, but it’s our choice. I won’t judge you for yours if you won’t judge me for mine. We all want the same for our children…we want them healthy, we want them happy, and we want them to have the absolute best chance at the life that everyone deserves.

People often ask me what I believe…and I suppose I’m qualified enough to give an opinion, but that’s all it is…so take it as you will. (and forgive me because I’m going to try to make this as un-sciencey as possible) Here are my thoughts on the most commonly implicated causes of autism…

Genetics- Yes, I do believe there’s a genetic component to autism, but it’s well proven by now that there’s no one mutation, not even one gene, not even one chromosome, that’s completely responsible for causing autism. Now multiple mutations have been shown to cause problems in the same biological pathways…different errors causing the same general malfunction. I think it’s the cumulative effect of these small changes that actually cause the symptoms that we see (and why we’re even able to diagnose autism by basic observations as opposed to a laboratory test). Many of these broken metabolic pathways can also be tied back to neurotransmitters, making it highly intriguing science. This is a path that we are pursuing with Kellen. If we can find what’s broken, can we give the body what it needs, what it’s missing? We’re chasing one theory at a time, but my gut tells me that it’s going to take a combination approach to get where we want to be. I’m less focused on the genetics as a diagnostic path and more focused on genetics as a treatment path.

Diet- No, I don’t think what we’re eating is giving our kids autism. I don’t think anything I ate (or didn’t eat) while I was pregnant caused this, I don’t think anything Kellen ate or didn’t eat caused this either. But (here I go on the fence post…) I absolutely believe that diet plays a role in autism. Why? Because I’ve seen it (back to my evidence-based plan). There are various iterations of “autism diets” ranging from the simple to the extreme. Yes, as a society, we generally eat like crap. We could all benefit from a cleaner diet. But these kids, I do in fact believe that some of the same broken pathways I described in the genetics component above cause significant issues in relation to diet. The metabolic and inflammatory pathways that are affected by the mutations cause a significant shift in what can be tolerated in their diet. When you start to look at how things like gluten (wheat) are processed by the body and look biochemically and where it fits in with the mutated/broken pathways, the big picture becomes a little clearer. So does diet cause autism? No. But does diet cause exacerbated symptoms? YES. If you don’t believe me then come over, I’ll give Kellen a cup of milk with a cupcake and let you handle the subsequent carnage. ; )

The Environment…dun-dun-dun- This is a tough one for me. It’s hard to follow my evidence-based plan when I have zero control over this. I guess I plead the 5th on this one with an answer of Maybe? Ultimately it could very well play a significant role…maybe leading to a higher number of spontaneous mutations and an overall increased inflammatory response in the population as a whole (as many have tied it into rises in asthma, allergies, etc. as well). So yes, but because there’s nothing I can do about it, then I don’t dwell on it (you like that non-committal answer?).

Bacteria, Viruses, and Fungi, Oh My!- This is a tough one for me, but it’s in fact a path I’m pursuing professionally. There is absolutely an important microbial component in autism. It’s still a very chicken-or-the-egg concept, but certainly the microbial communities (microbiomes) of these kids are significantly different from their peers. Add in the fact that we have WAY more microbial genes at work in our body than human genes and you can quickly see how the right/wrong group of bugs could help/harm an already volatile environment. I think it’s a fight worth fighting, but I think again there is not a universal approach that will work (and why many “biomed” treatments fail). Treatments need to be tailored to each individual child, and I know the biomed doctors are not running the right tests (because they’re not available yet…but we’re working on it).

Vaccines- There is no more highly polarizing topic in the autism community. First, let me tell you where I come from. I’m that person who chastised friends for not following the vaccine schedule precisely. I thought people who did not get flu shots were irresponsible. I would take any and every vaccine offered to me and my children, call it blind faith. Based on what I do everyday, I was far more terrified of the diseases the vaccines were protecting us from than I ever was of autism. But life has changed that line of thinking, and while I still believe in medicine, I’m also much more tolerant and understanding of every viewpoint. I absolutely see an immune connection to many forms of autism, and I think it's important to consider all potential contributors to prenatal and early postnatal development (which includes all of the above).

Other random proposed causal associations…** Older fathers- Nope, not us. **Anti-depressants while pregnant- Nope, not us. **Obese mothers- Um, no. ** Kids less than 18months apart- uhhhhh, yep (this one actually plays into the folate pathway that we’re currently pursuing… tracks back to a genetic component, more on this later)

My overall take? There are a lot of potentially good treatment paths out there, and we’re just at the start of our journey. I generally think the causation is flawed in many cases, usually due to the fact that people try to overgeneralize to all autism rather than stratifying into relevant and applicable populations. Again, all I care about right now is my population of 1…and this is where we stand…for now.

More on our treatment/therapy plans later…

When People Say I'm Sorry

We say "I'm sorry" for all kinds of reasons to all kinds of people. I bump into someone's grocery cart at the store (which happens a lot because I suck at driving those things): "I'm sorry." A friend tells me that someone close to them has died: "I'm so sorry." Same words, very different sentiment.

I have a lovely summer cold at the moment leaving me a grouchy, stuffy, snotty mess causing Patrick to jokingly say I was "gross" yesterday in front of Larkin. She took offense and told him to say sorry. Not finding his sarcastic "Sooorrryyy." to her satisfaction she then told him "Can you say sorry again politelier?" So begins the next generation of highly useful made-up words. : )

But sorry, back to the topic at hand.

When someone tells you less than favorable news, it’s our natural inclination as caring people to say “I’m sorry”. So the numerous times we’ve had to tell people that Kellen is autistic, well we’re commonly met with “I’m sorry”. Although many insightful people have actually said things like “I want to say I’m sorry, but that doesn’t seem like the right thing to say either.” Truth be told, it’s hard to know what to say. I don’t honestly know what I’d like you to say. Maybe just for you to feel like you don’t have to say anything? Maybe just ask “So what’s your plan now?” Hell if I know. But in the end, I don’t want you to feel bad about saying “I’m sorry”…your heart is in the right place. I just want you to know where our hearts are.

Don’t be sorry Kellen has autism. It’s autism not cancer. He’s not dying, anymore than you or I are.

Don’t be sorry because you feel like we got “less”…we didn’t. Don’t feel sorry for us at all. Remember us when you had to say “I’m sorry” any one of the many times we miscarried. There’s nothing to be sorry about here…have you met Kellen? LOL!

Don’t be sorry because our daily lives are hard…everyone has their own struggle. I see perfectly neurotypical children behaving horribly all the time. It happens. Just don’t judge, we’re all getting by the best we can.

Do be sorry that I can’t just plop my kids in the car and go shopping. But then what mother of young children does that all that well anyway, right?

Do be sorry that we can’t take some lavish vacation because every penny we have needs to go towards Kellen’s therapies/school/treatments while making sure Larkin has all she needs. But then isn’t that what the “hard years” are about anyway?

Do be sorry that we can’t be spontaneous with the kids because we need to follow our “routine”. But let’s face it, I tend to like my routine anyway ; )

Do be sorry that Kellen doesn’t talk…yet…because we are so excited to hear what he has to say when he does.

And here’s the bottom line…we’re not sorry. Would everything be easier for him, for us, if he didn’t have autism. Well, duh. But we know that removing those parts of him would inherently change who he is, who we love, who we need. I love that I can calm him when he’s in the middle of a hurricane of emotions…that no matter what wall autism may build, that I’m the one who can always bring it down. There’s a bond there that is different, that is special, that I would not trade for anything.

He makes us all a little better. Larkin has become a protective, sharing, encouraging big sister. Patrick and I have learned to just go with the flow (well he has…I’m still working on it), and we all have a greater appreciation for the little things…a little song, a little smile, a little funny wave, a Smurf flying into the toilet, a sloping bathtub used as a slide, 2 cats + 1 dog + 2 kids in a game of never-ending giggling chase around the first floor.
Our lives are never boring…and never will be…and for that, I am not sorry.

Why.

Why.
Not a question. A statement (I think).

Not “Oh God, why me?” or all the other various ways of phrasing that particular sentiment.

Simply…”why.”

I have some pretty amazing friends that are there when I need them…even when I forget to call, or email back, or facebook back, or …um, yep, so turns out I generally suck as a friend, but the ones that tolerate me are pretty freaking awesome ; )

Anyway, as I was saying…among those friends are a few that when they get to talking (and when I say talking then obviously that means talking while drinking) find themselves saying it for me…”why did this have to happen to us? Hadn’t we suffered enough? After everything, how did we deserve this?” I love them for thinking it, I love them more for saying it. Let’s face it, we’ve thought it. How could we not? But I’ve chosen (and fought with myself) to not allow myself those thoughts for more than a brief moment.

Why do I choose not to let myself wander (run) down that self-pitying path? Because when you start to ask “why?”, the answer seems to come a little too easily. I have multiple friends, from very different stages of my life, who truly knew/know very different iterations of me, who all say the same thing… that it can’t have been coincidence. They believe that I was purposely given an autistic child…that there was a reason…that I was meant to go down this road…because I would change the road for those behind me.

Why me? Because what if this is what will make my life matter…what if this is my purpose…

First let me say that there are many stay at home mothers of autistic children who do a damn good job of researching and understanding highly complex material related to genetics, biochemistry, immunology, etc. without having spent years in college classrooms attempting to learn it. I’ve definitely learned a thing or two from these moms myself.

But why me? Here is this complex disease that spans genetic mutations, broken metabolic pathways, immunologic responses, altered microbiomes, etc…And guess what...this is what I've been trained to do. This is what all my favorite people in the offices/labs around me have been trained to do, too. If I was searching for a purpose, well here it is slapping me in the face.

Why? Why me? Why the hell not me?
Most of you know my general hate for the "Everything happens for a reason" line...but holy crap, what if everything happens for a reason...sure makes all of this a lot easier to swallow.

So I'm taking a different approach. All of the above is my "why."
Because I can.
Because he can.
Because we will.

One last thought. When we were first diagnosed, much of what I read was firmly rooted in the "why God why?" line of thought. One piece that has always stuck with me was that they recommended we “mourn the child we dreamed of”. Huh? I call bullshit. I only mourn for the time I wasted reading that crap. He's not less, he's different. He doesn't make me want to mourn anything except that I wish everyone else understood him as well as I am beginning to.
He feels strongly, he loves unconditionally, and he laughs infectiously.
I don't have time to mourn...I'm too busy being in awe of him...and planning the future for all of us.