Wednesday, August 28, 2013

Day 8: Supplementary post: On relating, part 2.

So, I just wrote a post that I suspect may ruffle some feathers. While this was not my intent in the slightest, I'm also not going to apologize for it. I can't. It was too honestly written and I meant every word I wrote.

But I do feel the need to add a supplement; an appendix, if you will. And I hope that you will read it with the genuine sincerity with which it is written.

Dear friends with "normal kids":

Some days are hard.

This parenting gig. It's hard. And while I can only speak from my first hand experience, I can tell you that sometimes being Sammie's mom is really hard.

You see, he is my amazing little man. He is so crazy awesome that it brings tears to my eyes.

But he is different. Very different. And so parenting him brings different challenges. Not necessarily worse or better, but definitely different.

One of the hardest parts of parenting a special needs kid is learning to not compare them to other kids who have no disabilities. It's learning to understand that the "normal expectations" for his life just aren't quite the same. It's struggling with the knowledge that what I thought I was signing up for is very, very different than the gift that I was given.

And sometimes different sucks.

Day in and day out, I read updates about my friends' neurotypical kids. Their struggles, their successes and everything in between. And it's hard.

Please don't get me wrong. I love hearing about your kids. But, all too often, these stories come with a healthy dose of bittersweetness, knowing that they are stories I may never share.

This is my struggle to carry, and I am not asking for anyone else to take it upon themselves. 

But I am asking this: please, please don't make this harder by comparing my kid to yours. Not in their successes, and not in their failures.  Please stop trying to equate our parenting experiences, grasping at straws to find the parallels within the differences.

There are many things that we have in common- but if you're struggling to find common ground on a topic, it probably isn't one of them.

I promise you- I will never diminish the struggles or successes that you are facing and living. But please, don't try to diminish mine by pretending that our realities are the same.

They aren't.

When we talk about sleep troubles, we are probably talking about two entirely different types of issues. All kids have sleep disruptions and some neurotypical ones have genuine issues. I don't doubt that, and highlighting or discussing the issues that we are currently facing does not minimize what you are living.

But when you compare our kids, even on something as mundane as sleep, you are comparing apples and oranges. Children with autism are reknowned and studied for sleep disturbances that are unlike any other condition. To date, science has not identified the root of this issue. Almost universally, parents of children with autism will tell you that it is the single biggest impediment to having a healthy quality of life. And if affects every single member of the family.

So unless your reality sounds like what I've outlined above, the fact is that when we talk about "sleep issues" or "sleep deprivation", we are talking about two entirely different concepts. And trying to make these the same does nothing but further isolate us, further remind us of how "not normal" our problems are.

Of how you can't relate, despite how hard you try.

So please choose your words carefully with me. Don't whine to me about your kids who never stop talking.  And when you call me to tell me about your baby's first word, please remember that while I am happy for you, this is a painful reminder of all the words that Sammie has never said.

Unless you have a special needs, nonverbal kid (or an expertise in the matter) don't give me helpful hints on how to potty train or teach Sammie togl get dressed. Please don't assume that you have some magical remedy that I haven't tried yet. Trust me, I've probably tried it all and if I haven't, there's a reason for it.

Don't say that you are "scared" your baby might be like Sammie. Don't act as if our life is a tragedy that you are witnessing. It isn't, and trust me- the world could use a few more Sammies in it.

Don't talk about your kids' "special needs" unless they really have them. No, being high energy or spirited does not make your kid disabled. It makes them typical.

Don't argue with me about how your life is better or worse. It's neither. It's yours. This is mine. They are different, both imperfect but full of potential.

Don't pretend that your introduction to psychology course somehow qualifies you to diagnose my son or cast approval or disdain on our parenting choices.

Don't ask me if I've read Temple Grandin, or inform me that Einstein didn't speak until he was five.  I am aware of both, and while both are interesting, neither is actually all that relevant to my daily experience.

And finally, don't tell me that you hope Charlie is "normal". That's a discussion I am just not ready to have yet. Not with anyone.

Just be our friends, for better and for worse, and understand that are lives are very different from yours and that that's ok.

Help me to not compare my child, for his sake and for mine. He is unique, like every other child in the world.

Thank you.

Mama Zita

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