I am Aware

Today is April 1st, and the start of Autism Awareness Month. As last week was spring break for all 3 of my offspring, I feel like I am about as aware as one can possibly be when it comes to autism. And with the news from the CDC last week that autism is now affecting 1 in 88 children (1 in 54 boys), I am not alone.

When Elliott (11) was diagnosed with Autism at 2 yrs., 11 mos., I quite literally didn’t know of any family dealing with autism. Frankly, when the word was first mentioned concerning Elliott (oh that poor early childhood special educator), the only reference point I had was “Rain Man”. It was completely foreign to Tom & me. Now, you would be hard pressed to find someone who does not have some sort of a connection to autism. It’s crazy.

The world of autism is a disjointed community. We don’t have enough answers about what autism is, how you get it, or even how to help those that have it, and just like anything else, there are a myriad of disagreements that in many cases just cause us to spin our wheels. I wish it were easier for us to find some common ground, but then again, I was raised by hippies preaching peace and love, so that’s just my vantage point . . .

Mostly, (and I’ve taken heat for this) I don’t spend much time thinking about how or why Elliott & Ada got autism. No matter what, they have it, and we need to concentrate our efforts to help them, which is no small task. It takes up the vast majority of my life, and I have little left over with which to think about what happened or didn’t happen or what caused them to hit the genetic lottery of ASD. It just did.

Would I like answers – of course. I don’t wish some of the challenges we have had to face on anyone – even the jerky, snooty woman walking into the Galleria yesterday who just had to get to Coach (ok, if she could just deal with some poop smearing for an afternoon, I can’t lie – it would make me smile).

And this doesn’t mean I don’t want someone working hard to find these answers. I spend a great deal of time and energy volunteering at Autism Speaks because they are focusing their efforts on supporting families and finding these answers. Yes, we need answers, but at the end of the day, Elliott & Ada have autism, and my focus needs to be on helping them.
In the last week, I must admit that some of what I’ve heard and read has been painful. With the CDC numbers on the rise, people are taking notice. Believe me, no matter what your awareness level is, that is one lottery people know enough not to want to hit. Unless you have a close connection to ASD, you likely don’t really get what autism is, but you know it’s something you’d rather avoid if at all possible.

One Facebook ranting that I came across was about blaming parents for being emotionally vacant, kids lacking social interaction skills leading to an ASD diagnosis. Parent blame – yeah, that’s already been tried in the ASD world, thanks anyway. It took restraint for me not to go all “refrigerator Mom” on her, but who’s got the time.

Some articles are focusing on the theory that we’re just better at diagnosing ASD now, and that’s why the numbers are going up. It’s true that we’re getting better at diagnosing – after all, those doing the diagnosing are getting plenty of practice these days! But, (and I’ve thought about this for a long time now) if that were true, where are all the kids like my Elliott who are now in their 40’s or their 50’s? There should be 1 in 88, so you’d think they’d be easy enough to spot – especially since they didn’t get the help they needed when they were younger.

I’m going to be 45 this week (gulp), and guess what – I didn’t know one person anything like my Elliott in my entire school or town growing up. Looking back, I can recall one kid in junior high who was exceptionally bright, socially challenged, and obsessed with space stuff who likely had Asperger’s (undiagnosed, of course). But that’s it. Better diagnosis is but a fraction of what is going on. This is a huge challenge with too many questions and not enough answers. It’s not as sexy as other health challenges, but it’s mighty expensive, so sooner or later, it will force its way into everyone’s living room in one way or another.

One question I’m asked a lot by people who just genuinely are trying to understand/care is what is autism? Wow, do I wish there was an easy answer to that one. Autism presents differently in every single person it affects. Even amongst my two children with an ASD diagnosis, there are major differences and some striking similarities.

Here is how the Autism Speaks website explains what autism is: Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.

For Elliott, autism means that he can spell at a 7th grade level, and can fluently read and decode words at an age appropriate level, but only comprehends what he reads at a 1st grade level. He makes some odd noises now and then, and has a temper that explodes off the charts when things don’t go his way or how he expected them to go (i.e. if Dad picks him up in the car instead of me in the Van, and this could take him an hour or more to move past). He has very few typical leisure skills and unless we give him structured lists of what to do and when, he would spend his days following us and talking constantly – though not conversationally, just talking at us. His attention span is severely limited (even on medication) and the only TV show he has watched in its entirety in the past year was an “Undercover Boss” that focused on Oriental Trading Company which is one of his obsessions. (Guess where he wants to go for summer vacation?)

That’s a snapshot of some crappy stuff. Here’s some cool stuff, and yes, he is full of awesomeness especially when it’s not a really difficult spring break – if you tell Elliott your birthday, even in passing, he will never, ever forget it, and will almost certainly send you a card. He has an amazing memory for dates, and it’s kind of cool the stuff he can recall even years later. He even remembers the hotel room numbers for almost every hotel we’ve ever stayed in since he was a toddler. He’s very outgoing – sometimes a bit too much so, but he loves people. He’ll talk to anyone, and genuinely enjoys meeting new people and going new places. He is loyal, and loves his extended family and school to the ends of the earth. While he’s still learning how, he is motivated to have friends.

For Ada, if you did not know that she was on the autism spectrum, you might not notice anything different for quite some time. She does not talk as much as other 5-year-old girls, and her language is less complex. Her imaginative play is not as involved as her peers, and she has a harder time joining group activities. She has periods of time that her hyper-activity is very apparent, and other times when she is low-key. Sometimes she talks about Impala’s too much, though it comes and goes. Unlike Elliott, she has lots of terrific leisure skills, and is very interactive with her brothers and other kids – but she does way better in small groups. When Elliott is struggling a lot with noises or odd body movements, she is very apt to imitate him, which presents its own challenges.

Again, this is but a tiny snapshot of what autism feels like in our house (and from the vantage point of an exhausted Mom after a pretty tough spring break week of medication changes, strep throat, and too much together time).

Yesterday, I had lunch with an old friend who is not a parent, but who genuinely tries to “get it”. He asked me if I could travel anywhere in the world for a long weekend, where would I like to go. Truthfully, I told him that even if I could spend a quiet weekend in Dubuque, Iowa in a Super 8, that for me that would be an enormously appealing adventure.

You see, I’m tired. Autism, for me, has moments of crazy intenseness and chaos (like much of our last week due to E’s medication changes which will hopefully help him), and then days of regular intensity. But, it’s always there, and it never takes a break, and I’m always waiting for the next wave to hit. It’s a state of constant adrenaline, and I feel completely exhausted today, and a little sad because I don’t like that feeling of being a bit bullied by autism.

A few years ago, I had the chance to travel to Boston with just Henry when my nephew was born. I think of this trip often, as it was a giant wake-up call and a realization of how different my life is. It was like a weird science project – feeling how it must be for lots of families out there who don’t have a child with autism. The biggest difference was just the ease of being together – a connectedness that just naturally happens. It was just so easy to be with him, and hang out. Our tensions just melted, and the feeling of being on edge disappeared.

As difficult as this week has been, I won’t give up hope that together as a family of five, we can achieve that same type of feeling for even a brief moment one of these days. Just like everything worthwhile in life, it likely won’t be easy, but we’re not afraid of a little hard work. One foot in front of the other.

Until then, I will dream of a Super 8 in Dubuque and a little peace and quiet . . .

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6 responses to “I am Aware

  1. Oh my gosh I love your writing! That old song “strumming my pain with his fingers, singing my life with his words…” says what I feel when I read your words. Cody is 3 and has an IDIC15 diagnosis which closely fits on the autism spectrum. He may never talk and we doubt he’ll ever be able to live independantly on his own and lately we know of several other children with his diagnosis who go to sleep and then simply never wake up again. But like you, we live for the positives and thank god for every new day we get to be his parents. Our house isn’t always spotless and we certainly aren’t rich and like you a day where my husband’s parents watches our two boys is a day we treasure above all else just because we get to sleep uninterrupted. I’m such a big fan of yours!

    Like

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