Wednesday, April 2, 2014

In our house, Autism Awareness is all year 'round...

I wanted to take this opportunity, April being Autism Awareness Month and April 2nd being World Autism Awareness Day, to share something personal on the blog. As much as I post photos or stories online, I am fiercely private about my family life and I debated internally a LOT before finally deciding to put this out there.

The CDC recently reported that one in 68 children in America is diagnosed with autism spectrum disorders. The numbers grow more and more every year. It is yet unknown what causes autism, or what can be done to treat or cure it. It's an absolute mystery in every way, and the unknown is a scary thing.

My son "Bu" is that one in 68.

He is nonverbal. He self-stimulates by flapping his hands and sometimes pokes his own eyes or slaps his belly to receive sensory input. He does not pretend-play at all and rarely even notices when other children are around him. He shuts his eyes when he's overwhelmed. He's only recently become more social with family members besides my husband and me, and his eye contact used to be nonexistent.

He was developing on track until about 15 months old, when he started walking. As soon as he picked up this skill, he started regressing. He stopped clapping and pointing. He stopped giving high-fives when asked. I've been told by medical professionals that this happens a lot, where the brain takes up so much energy coordinating gross motor functions when learning to walk, that the rest of the systems suffer. It's supposedly quite common, though I'd never heard of it.

We saw a neurologist in December that specializes in children on the spectrum. She told us based on her observation and questions asked that Bu wasn't 100% textbook ASD, but that we should seek treatment as though he is because all signs point that way. We were told he operates on a 9-month old level (he was 27 months old at the time) and that a formal diagnosis would be made in a year depending on how he responds to therapies.

It's been 3 months since that visit. He's been on a gluten/casein/soy free diet for 6 months. He's on various vitamins and supplements and I add new ones regularly as I learn about how they might help him. We are working with an occupational therapist, a speech therapist, and his developmental pediatrician. Our team is truly phenomenal, and I couldn't be happier to have people that care so much about Bu helping us. His eye contact and social expressions have grown remarkably. He's far more aware of his environment and the people in it. 

Most days, I'm of the mindset that I'm going to kick autism in the ass. I spend every spare moment reading, asking questions online, doing webinars (explains why I haven't been posting as much lately, huh?). I've made helping my son and making his life easier my full time job. Some days though, I'm overwhelmed with sadness. I don't know if my son will EVER tell me he loves me. I don't know if he'll ever be able to have friends, to have a relationship, to have a job...what will become of him when I'm gone? These are all very real things that could and will be his experience, and it hurts my heart. Life is challenging enough, without this on top of it...and no one wants to see their child in a tough spot. 

I love my son and everything about him. I actually think sometimes (on good days) how weird it'll be when he starts talking because his little grunts and giggles are so much a part of him. It's strange to love someone so much as they are, and at the same time wish things were so different. I find many autism parents wouldn't dare say something like that, but I'm keeping it real. I love my son and I love the person he is. I do not love that his life will be exponentially harder than that of his peers because of something he didn't choose.

This weekend, I'll be going to the local Autism Speaks walk. I will be going to try to meet other parents in my huge city that share my experience, and to gather resources in my community. I am NOT, however, donating to Autism Speaks. Here's why: I don't donate to any causes that have walks or events because guess what it takes to put on these events? Money. There's no way of knowing how much of your dollar goes to research truly. Worse yet, I've never heard of a family with children on the spectrum getting financial help from these organizations. Research is obviously important, but as a mother struggling to pay for therapies, vitamins, a special diet, etc...research is something that's out of my scope. I'm actually considering opening a SmartyPig or GoFundMe for Bu to ask people for donations for his therapists because thanks to his crap insurance, he hasn't been able to see his OT for almost 2 months. The struggle is real. Really real.

So, there you go. This is our life. I plan to be much more open about our daily life, our regimen/protocols, treatments and how they're going, etc. When I first started looking up information on autism, I was both overwhelmed by all the stuff out there, and disappointed at how little it helped. So hopefully, the things I write about our experience helps at least one family. 

What can you do? Easy. 
-Do not judge. You never know if that child at the store having a fit is really a brat, or if he's having a meltdown because the sound of someone's shopping cart is overwhelming. 
-Don't ask stupid questions. "Are you sure? He doesn't LOOK autistic" helps no one. 
-Be kind. A child might not be trying to give anyone a hard time, they might just be having a hard time. It gets frustrating to not be understood. 
-Don't assume. We're a chemical free home and we do not vaccinate. These things happened long before the idea of autism even entered our vernacular and has absolutely NOTHING to do with Jenny McCarthy, thanks. 
-Be patient. My son doesn't usually respond to verbal cues from unfamiliar people, and rarely makes eye contact with most people. He's not being rude, that's just how it is. Don't take it personally and don't insist.
-Donate your time or money to FAMILIES, not organizations. We need them more than they do. You'll make a much bigger difference. This includes things like just asking how we're doing with the intention to REALLY listen and let us vent.
-Be understanding. People with ASD are still people. Not less, just different. 

For those of you that have asked how you can donate to Bu directly (and thank you so much for offering to help, I'm totally overwhelmed by the response!!!) I started a GoFundMe for him. Please make sure you read the whole description!!! And thanks so much again for your love and support!

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