Ashley Goes to Washington: The Start of a Bill

I was talking to someone online today, who's child is about my son's age. Who has concerns now that her little one, might be on the spectrum. I have conversations like this, several times a week. People who have seen my posts, on this page or that, this website, or another, all asking me the same thing. "How did you know."

For me, there was a very clear moment, when I just, knew. Before a single evaluation was done. It hit me that I hadn't heard a word out of my gorgeous boy in almost 2 months. He stopped responding to his name, to requests, to anything. He'd started to become obsessed with certain activities, that i now know are his "Stims" and he stopped playing with us. He stopped even trying to get anyone's attention. It was sudden, and it was drastic. In the space of just a couple months, my little boy completely changed.

But not every child is like mine. There is a saying, that we Autism families use a lot; If you have met one person with Autism, you have met, ONE person with Autism. It affects every single patient differently. So some kids, have a very clear regression like my son. Some kids NEVER hit their milestones on time, right from the start. Others have a much more subtle, drawn out regression, and some? have no regression at all. There ARE however, signs. Some things, that despite the vast expanse of variance in the spectrum, seem to be transcendental. Red flags that if recognized, can lead to early diagnosis and treatment, and therefore, improved quality of life.

But how many of you know them off the top of your head? When you thing Autism, what comes to mind? (Say Rain Man in front of me, and I will try to fight the urge to scream). How many of you have researched it? Been taught about it?

Plenty I am sure. Unfortunately I am equally, if not, more certain, that no matter how many of you answered yes, too many of you answered no. That's okay, this is not  your fault. NO ONE wants to research potential "disabilities" when thinking about having a child, or when pregnant. No one. The unknown is freaking terrifying, ESPECIALLY when you are talking about this tiny human that is the center of your whole universe and everything in it. It's scary to consider.

But think now, my fellow Autism parents, if you HAD been prepared? If you had been armed with knowledge, and an eye for the warning signs. With 1 in every 55 children being diagnosed with Autism as of this year, it is a reasonable expectation, for the good of the patients, and the good of the population, that every single parent, be armed and ready, to seek intervention and help as early as is humanly possible. Children with Autism have SO MUCH to offer this world, and we owe it to them to have their backs, and their best interest at heart.

1 in 55 children. Think about that. 1 in 55. And there is virtually no, ready access to information on what to look for unless you search it out.

With that is mind, I have decided to draft, and ultimately, I hope, see through to it's completion, a bill that would make educational material on Autism, and early diagnosis a part of the prenatal program in this country. We are educated on breast feeding, on chromosomal abnormalities, on infant care, and vaccines for illnesses that now effect as few as 1 in a million in this country. But ZERO education that would benefit ONE IN EVERY FIFTY FIVE CHILDREN.

I knew nothing about Autism when my son was born. Not a single thing. I have had to spend the last 14 months educating myself. Seeking out books, experts, therapists, articles, interviews, anything I could so that I could be the best possible parent that I can be to my son. Wouldn't it be nice if this information was handed to parents? If they didn't have to spend collective months, with their nose buried in a laptop? If they realized what was happening sooner? And, not for nothing, if they didn't have the benefit of plausible deniability?

I want more for these kids. These amazing children, with incredible potential. They deserve early, and skilled intervention, and by assuring that every mother who seeks standard prenatal care is armed with the information she needs to make educated decisions for her child, we will be one step closer to fulfilling our obligation to them.

Trusting Your Gut, and Other Niceties.

When our son was 13 months old, a comment online hit my like a ton of bricks, and it dawned on me that some of his behavior was not quite on track. So I got online, and i started researching.

You see, until about 11 months, he was very advanced in every way. He rolled over at 8 days old, he sat up at 12 weeks, he said momma at 5 months, immediately followed by dadda the next week, and he used them appropriately. He was bright, and social and never stopped smiling.

But when he was 11 months old, and started walking, he stopped talking. He never started again. 16 months later, and despite knowing about 30 words, he can't use them to communicate with us. He is trying so hard, he is the single hardest working person that I have ever seen in my life. He is making amazing strides daily, but verbalization still hasn't come back.

Affection has though. And his ability to recognize what is being asked of him has.

See, after my hours (days) or research, and an online MCHAT test, it was clear to me, that he was exhibiting the early signs of Autism Spectrum Disorder.

Not a single person believed me, not even the pediatrician we talked to. But I couldn't take a chance. So we got him evaluated, and he was far enough behind to start therapy immediately, and we did. Then we moved, got him reevaluated, and increased his therapy, and got on the wait list at the Seattle Children's Hospital Autism Center for official diagnostic evaluation. In the seven months that we waited for his name to come up, we went to therapy 3 days a week, that is still our schedule, but we're about to add 12 or so hours of ABA into the mix, so that every weekday he will be seeing one of his therapists.

It turns out, that I was right. Even then, even in the very beginning, when it wasn't so pronounced, and his speech delay could have easily just been that, my gut told me it wasn't. I've known who my son is for a long time. So as others came around and recognized the signs, it wasn't some big shocking thing for me. Because I knew, and because I trusted that instinct, my son has been receiving consistent therapy this entire time, and he stands the best possible chance at leading a fulfilling, happy, incredible life, which is the very least that he deserves, and the very least that I owe him.

My point here is this. If you have concerns? Do not listen to people telling you to "wait and see". Just don't, it is in no way worth the risk. Say you go in, and you get evaluated because your kiddo is a little behind, and they prescribe therapy. You go a couple months, and it turns out, Little Billy is perfectly normal, and was just focused on other areas. What did you lose? Nothing. Your kid got some extra, and early education, and socialization that will benefit him for the rest of his life.

Alternatively, say you wait. 6 months, maybe a year, and Little Billy still isn't talking, but instead of having already been in therapy, you're just getting the ball rolling now, and he missed valuable months of neural plasticity that therapy could have taken such advantage of.

The human brain before 5 years old, is like a fluid, living thing. It is malleable, teachable, it soaks up information like a sponge, and the earlier invention is sought, the better the brain responds to the treatment.

Now I am not trying to make anyone feel bad, that isn't what this is about. Sometimes the signs are so subtle, that you just don't notice, and that is okay. If you have no idea what to be looking for, if it just hasn't been on your radar, if it just wasn't even noticeable at first, there is not a thing you could have done about that. It is not your fault, you are doing the best that you can. You are a great parent, and never ever forget that.

My problem is the people, doctors in particular that are constantly telling people who are worried about their children, to just wait. Wait and see.

With everything we have learned in just the last 20 years, how could any doctor suggest that? By doing that you teach them not to trust themselves. You make them feel crazy, and irrational, and they go home and they wonder about their ability to parent. That helps, not a single god damned person, let alone their children. If a parent comes you, Dr. Who-the-Fuck-Ever and they tell you, "Hey, my baby isn't talking anymore,  would like to get him evaluated", and you tell them "Oh I am sure it's nothing, i'm not concerned, why don't we wait and see?" Exactly who do you think you are serving? Because in one fell swoop you have made her feel invalidated and weak, and you have risked being wrong about your patient. You know, the tiny toddler who's childhood you might have just fucking ruined by not making sure he got the services he needed immediately.


Okay, so that last bit got ranty, but my point stand. Parent's? Can you hear me? You know your baby. Better than anyone else in the world. Better than her pediatrician, or your friends, better than your family, or any number of people you talk to online. You know. You know that little angel, and if your gut is telling that something is off, you trust yourself. You owe it to yourself to have faith in your abilities, and you owe it to your kiddo to be a parent with confidence. No one ever suffered from extra education.

Here we are.

My name is Ashley, and if you are reading this, welcome to my trillionth attempt at maintaining a blog that doesn't embarrass me some years later.

Here are a few facts about me:

• I am pushing 25, but we don't talk about that. 
• I have been happily married for 4 years (in 2 weeks), and i love to talk about that. Much to the nausea of those around me. 
• We have a beautiful, incredible 2 year old son, who is the light of my life and our favorite person on the planet. 
• He also happens to have ASD, and is, as yet, non-verbal. Not that it hinders his personality, humor, or general magnificence in the slightest. 
• I am an artist, and a musician, and an unrepentant nerd.
• My husband is a martial artist, and an aspiring viking, and man, i am a lucky girl. 
• I plan on opening a restaurant, and a dozen other things that will culminate into the single most bad ass adventure and tourist attraction you could possibly imagine. Stay tuned, because big things are going to start happening very soon. 
• I am ambitious, and i am stubborn. I don't believe in "wait and see". I make shit happen. That sometimes translates into "type a" behavior, and i do regret that. I don't enjoy bowling people over to accomplish things, but sometimes, a girl has to do what a girl has to do. 
• Everyone has faults, i acknowledge mine.
• Everyone has weaknesses, and i resent mine. But i deal with them.
• I have chronic depression and generalized anxiety disorder. Prozac has saved me. 
• I am crunchy, "natural", a hippy if you will. You know, while still hating the smell of patchouli.
• I am young, but you wouldn't know it to look at me. My body is falling apart, but science will save me. 
• I believe that. With every fiber of my being, i believe in science, and man's ability to innovate. 
• I am an Atheist, and a steadfast defender of every single person's right to peacefully practice whatever belief speaks to them. I will never judge you based on your beliefs, unless they harm another person.
• That being said, i will also defend, til i am blue in the face, someone who is being persecuted because of their beliefs, or because of the beliefs of another. 
• That shit don't fly here. 
• I could read indefinitely, and i am a chronic researcher. I take free college courses online in my free time because i believe in constantly educating yourself. Even if you can't afford to get a degree. 
• I'm not a pacifist, but i think in general people are too quick to violence. 
• I am dying to learn kung fu.
• I dream of completing a spartan race.
• I would give anything in the world, to ensure that my son never had to worry, a day in his life about his future. 
• I want to travel the globe, and i want to take him with us, so that he knows that there is so much more to this life than his back yard. 
• I have a million goals, and the confidence to truly believe that i am capable of achieving every single one of them, and 5 years ago i could not have told you that. 
• I have grown to love who i have become. I have flaws, i have areas i need to improve. But i am a good person, i am strong, and smart, and i refuse to be ashamed of saying so. 

So here i am. Let's go on an adventure.