Autism, Family, Thoughts

Dear Autism Parent

Dear Autism Parents | DavsArt

Hypothetically speaking we just had a passionate online exchange about autism and this happened:

Dear Autism Parent,

I am tearing up too. I’m sorry if I came off harsh, or rude. I am also very passionate about autism, my 17 year old nephew and my 5 year old are on the spectrum. I rarely hear people differentiate what I call side effects (for lack of better term) from autism itself. I belong to a group of 18K members on Facebook for autism support and I see people post “I kicked autism’s butt today” or “I hate autism” all the time. I live with meltdowns, running, diapers way past the typical potty trained age etc, etc. I understand that a lot of parents are living with what may appear to be easier, or harder situations. But it’s all relative. The fact is that we’re all in the same boat together. All of us love our children and ache over their hardships, and as parents in turn we take these hardships on ourselves and they become our own.

But I believe autism is beautiful, and a big part if what makes our kids who they are, they have autistic brains. I know I wouldn’t be me if I had a different brain.

The people I look up to and respect in the autism community who have autism, refer to themselves as autistics. They see it as a part of who they are.

So when I hear “I hate autism,” or similar I can hardly keep myself from pointing out that autism isn’t the problem. It’s the over-stimulation and our lack of knowledge about how to help our kids adapt and learn how to overcome the challenges they face everyday. To me this is a big issue that never gets talked about. I believe if my son heard me say “I hate autism” or ” I fight autism everyday,” he would assume I was talking about him personally, because he is autistic.

It’s so confusing. For the most part Neorotypicals think it’s PC to refer to the person first and then the diagnosis. Or we’re supposed to say he has autism, not he’s autistic, because “they are more than their autism” and we think that makes us more aware and accepting, which I appreciate. I get that we want to be sensitive, that’s a good thing.

But it’s a total catch 22, because when we say they’re more than their autism, we’re implying that autism is not an integral part of what makes them who they are. We’re also implying that it shouldn’t be a huge part of who they are.

Who would you or I be if we had someone else’s brain? And what’s wrong with our brains that they should play the most important role of what defines us? “I hate neorotypicalness” How does that feel?

I’m wondering if I have some kind of impulse control issue, because I should have just written a quick reply and not try to build another soapbox. :3 You don’t need that. I’m sorry. And truth is that I’m putting into words for the first time exactly why I feel so passionate about this as I do. I’ve never been confronted on the why’s of this specific opinion I have.

But since I’m in so deep here, I might as well sink and lay it out flat. When I read I hate autism, even if squished between, love, embrace etc, it still reads to me as “I hate a huge part of what makes our children who they are.” That’s what I hear, and how it makes me feel, I read it almost daily in my ASD support group. And why I get so passionate about wanting to point out that we don’t hate our children. Not one thing about my child do I hate. And I know the same is true for you. I know it is.

I might hate that my son doesn’t say mama or dada. I hate that he is forced to cover his ears because a light bulb is buzzing two rooms away. I hate that he can’t enjoy a good meal because the taste overstimulates him, or the texture freaks him out etc, etc.

But I know those things aren’t who he is. I know he would talk and want a way for his brain to be able to filter out those sounds, or distracting, scary textures, tastes, lights etc, etc so he could focus on other things. If he knew how, I know he would say hello to the neighbor girls when they are calling to him.

And we’re doing everything we can as parents to find that solution, the clue that will help us help our kids. That is the missing puzzle piece. How to help them be who they are without all the road blocks.

But if you take the road blocks away, autism is still there.

We aren’t fighting autism, we don’t hate autism.

What we hate and fight are the road blocks.

I know, it was ridiculous of me to butt-in and try to preach. I actually had written something much longer at first but deleted it. I even told myself to let it go, because I know it’s generally not what a person means when they say “I hate autism.” But I couldn’t stop myself. I feel like this is something that needs to be addressed.

Please forgive me for such a long winded, preachy, rambling message. I’m quite embarrassed now. But I feel like it’s too late to just delete and forget this whole exchange. What you wrote did make me cry. It’s really strange how a screen can make you forget you are talking to a living, breathing, thinking human being. I’m sorry for any inconvenience this letter may have caused you, I know your time is precious. Please have a great week, and accept a big hug from me.

~Sarah (Davs)

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Poetry, Thoughts

Gods and Devils

Gods and Devils | DavsArt

I believe in all paths to god, especially the paths that set god free. I believe in goodness for the sake of good rather than goodness because we fear consequence. Letting go of the belief that we are born sinners. Recognizing that heaven and hell are not destinations in the sky, but actual places, inside and outside of ourselves that we can go to right here on earth. Realizing that we don’t have to feel guilt and shame for being what we are. It’s ok to be human. We are all gods and devils.

*the call is coming from inside the house*

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Autism, Family

Autism Isn’t Easy

Autism isn't Easy | DavsArt

I have been careful not to expose the hard things that come along with raising a child with autism. I want so much for people to focus on the good. I see so much goodness and potential in my son. And I don’t want to stigmatize autism. Every single experience is different. But I’m certain that saying autism is not easy is a truthful statement for everyone living with and touched by it.

The fact is that our world, society, cultures, were not built to accommodate an autistic mind. If it were, we wouldn’t have all grown up with parents and teachers emphasizing the importance of eye to eye contact. We would not have so many tongue and cheek phrases, such as tongue and cheek. There would be designated autism friendly buildings, parks, and events everywhere all the time. What I mean by that, if you are not familiar with autism is, sensory friendly, low lights, hushed noise, comfort zones for people affected by sensory overloads to recharge. Products designed to help people with autism, whether it be therapeutic, safety, or educational would not cost an arm and a leg because the companies know that people are desperate for anything that may help ease our loved ones lives just a little more. People would have a broader awareness and understanding when witnessing a meltdown at the grocery store, or a child stimming at the park, and in turn would not return home that day to post on Facebook about how some parents should learn how to discipline their kids in order to have more control. Hand flapping, shirt chewing, scripting all of these things would be considered normal and not induce bewildered stares by passing strangers. PECS cards would be available in every store, library, office, etc, etc.

I want to believe, all those things will happen someday. With the growing rates of people living with autism I can’t help but imagine a future where only a very few people won’t be totally familiar with autism. Out of the now 1 in 68 school children growing up with autism, these future adults will surely create environments designed specifically to help the younger generation adapt more easily than they did. Possibly our language will slowly evolve into a more literally minded way of communicating. I could go on, but I’ll save it for a rainy day.

But here  it is, not including the side effects that affect so many, despite my avid believe the autism itself is a beautiful, wonderful thing, it is also hard. The side effects are hard for parents to deal with, sometimes there isn’t anything you can do when your autistic child is having a meltdown but wait it out and make sure they are safe. That’s hard. But more importantly it’s hard for the person with autism themselves. Living in a world that is only beginning to grasp the differences between an autistic mind and a neorotypical one.

My son is non-verbal, he doesn’t appear to notice that you’re frantically waving goodbye to him on the school bus. Our two little girl neighbors call him Powder and call to him across the yard “Powder! Powder!” and he seems completely oblivious to their very existence. But he’s not. And he’s not doing it because he doesn’t care, or doesn’t want to. He just doesn’t know how. He comes and sits with us sometimes at mealtimes, brings his Kix bowl and shovels Kix into his mouth while we eat real food. He wants to understand, and be a part of our world. He knows he’s different. He manages to stay occupied enough. But there are times when tears just flow, not because he was physically hurt, or broke a toy, but because my 5 year old little boy can’t handle the frustration that comes along with the inability to share with anyone his real thoughts and feelings. And sometimes the tears come because he did fall, or stub his toe, or broke a toy, and we have no idea where the owie is, or broken toy. Because he can’t tell us.

It’s torture, as his parent to watch the heartache in my small child. But I’m not the one who needs compassion and understanding. I’m not the one who needs acceptance. He is.

Every person with autism is different, and they all have different experiences and stories to tell, even my non-verbal son has stories to tell. I believe someday he will. More and more books, documentaries, blogs are coming out written by people with autism, read them, I don’t mean read them all, but do, you know? Learn something about autism. Not the statistics, but the stories.  I’m here to spread awareness, add to the conversation, I want to do what I can to change the way the world looks at my son.

But this affects you too, autism is becoming a huge part of our society, and we, those of us living and touched by it need you to make an effort to understand, and accept us. I’m asking you to make a point to learn about autism, and not just from a mommy perspective, heck, what do I know? My son is the expert. Seek out information written by people with autism themselves. I believe acceptance comes most genuinely through understanding. The more you know and understand, the easier our world becomes. And we need that so much.

 

 

 

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