Sacrificed To A Greater Good

The chimes sing a discordant song orchestrated by the wind. The birds sing their own song in glorious refrain. Looking out on the waters of the bayou, sparkling with wind and sunlight, I'm filled with the life of the world. But I was never here. 

I don't know if the things you've done, good and bad, tip more one way or the other on the scales. I don't know how mine tilt either. How we contribute to the world, even the world doesn't know. The people around us can internalize one thing or another that we've said and done, and be better or worse for it. They may never know the weight of it themselves. 

In a dream I was sacrificed for The Greater Good. I and my child. I tried to define Greater Good first, to make that decision, but that decision wasn't asked or allowed of me. Only my sacrifice was demanded. 

Our Christian history is full of martyrs. Martyrs for God's Good and Glory are of a different story. The World's leaders don't get to decide for me, and especially for my son, what The Greater Good is, and demand my sacrifice. There is no Great Good if it's gotten there on a road paved with human bones. 

Continued in "This and the Moral Line"

Should You Tell Your Child About Their Diagnosis?

“When should I tell my child about their diagnosis?” 

“Should I even tell him?”
“I haven't had the heart to bring it up yet.”

Once upon a time, children who were adopted were rarely told that they were adopted until they were adults. This would be a devastating revelation because by that time, they felt that their whole life had been built on a lie.

Keeping a child’s diagnosis from them is the identity lie of the 21st century. 

We would only commit the lie of omission because the thing we hesitate to reveal is bad, right?

As much as you may not understand it, a mental health diagnosis is part of who your child is. Even a diagnosis we learn to overcome, such as anxiety or OCD, leaves grooves and scars, and shapes us in ways that a neurotypical person will never understand. If someone you love has a diagnosable condition, you may feel and even hope that if you ignore it, they can ignore it also. Life doesn't work that way.

Any health condition, and any mental health condition, is something that is going to make life more difficult in some way for the individual. If the atmosphere in your house is that “we don’t talk about this,” then the individual will probably feel that they shouldn’t talk about their difficulties. They should try harder to be normal, or at least look and act normal. The fact that this is a struggle when it seems to be so easy for everyone else is a cause for depression, heightened anxiety, mood disorders, self-harm, and even suicide. This isn’t hyperbole or a scare tactic. Children who commit suicide overwhelmingly deal with the struggle of trying and failing to fit in.

Ignoring the issue won't make it go away. It makes it worse.

No matter what you do or don’t do, your child will know that they are different. 

On the other hand, knowing that it’s not all in their head, or that there are others like them with the same struggles, and that it isn’t their fault for not trying hard enough, can be a bittersweet relief. In our desire to fit in, even finding a seat with your name on it in the Island of Misfit toys brings the comfort of community. And there is a community with your name on it.

So when should you tell your child about their diagnosis? Right now!  

How should I tell my child about their diagnosis?

The diagnosis should be revealed in a positive way. Parenting isn’t about you, it’s about them. You can have your cries in the dark corner of the Target parking lot, or get drunk and compare parenting notes at the next Moms' Night Out. And if you haven’t found your local special needs parenting community, that should be your next mission. They’re out there. But when you talk to your child about themselves, it’s about them, and your struggles parenting them shouldn’t have a voice in the conversation. Their identity shouldn’t be tangled up in improving your life.

My son was quite young when I started talking to him about his autism for the first time, and his receptive language skills (the ability to comprehend what’s being said to him) was low, so I kept it simple.

“Your brain works different than a lot of other people. That’s a good thing! The world needs people who think different. My brain works different too.” 

As he and his comprehension grew, so did his questions. I got books that we read together. He spent a lot of time among non-typical peers, and among our special needs community. We could both relax around other families who don’t blink an eye at odd behaviors; the ones that make everyone uncomfortable in neurotypical groups.

And like that, autism has always been a word in his life. There are no bombshells, no feeling isolated because he’s not like anyone else, and he doesn’t feel any negativity about his diagnosis or himself. He’s actually rather proud of his differences, while still understanding the extra struggles that it's brought him.

Talk to your child about their diagnosis, keep it on a level they understand, grow the conversation as they grow, and keep it positive. Find your community of non-typical peers and parents who laugh in the face of a meltdown.  

Typical people, it’s time to start pulling your weight

Years of therapy - speech therapy, occupational therapy, behavior therapy, and social skills. My 5 year old has worked his butt off to learn how to understand and relate to the typical world. What a smile means, what a frown means, what sarcasm is and why people don’t say what they mean and mean what they say. Don’t hug, don’t touch, don’t stand too close because it makes the typicals uncomfortable. We still haven’t got that down. Typical kids jump away like they’ve never had affection at home. Sometimes I feel sorry for them.

He. Tries. SO. Hard. He doesn’t get it right. The kids are mean. He wants to give up. He echoes lines from his superhero cartoons “That kid is NOT my bro.” He sobs in my lap for a half hour because I won’t let him quit soccer this time.

And I think, it’s not fair really. He was born behind the curve in understanding an illogical world. Meanwhile those for whom learning comes easy breeze through with a scorn and a laugh, some flippant remarks, adults who think we all “take it too seriously” when every day that we go out in public is a war. A war to keep my child from sinking into self-hatred and killing himself. Too dramatic again? Uh oh, better run back to your pintrest and desperate housewives, because today I’m keeping it real.

See, words and attitudes do hurt, even for a child who might not have the finest grasp on words. What he understands less is why he’s an automatic outcast. He takes it out on himself, not knowing how he’s messing it up, but knowing that he is.

My five year old said he hates himself and wants to kill himself. Several times.

At first I reacted by saying I hate Autism. But I don’t. I hate typical. Typical, self-important, entitled yahoos to whom life hands apples and they make quips about what to do when you get lemons.

The week I was dealing with a suicidal five year old, rejection on the playground, new soccer kids in new soccer team who scorn and push and play better, meltdowns in public and sobfests in my arms; that same week I am confronted by an internet post that mocked parents who have screaming kids in target. Bring on the inevitable tidal wave of public opinion and vicious posts about bad parents and rotten kids. I wasn’t mad, yet. I know people are ignorant (though it’s 2012 and the information age, for God’s sake.) I'm always more hurt for Jaden than offended for me, because people think of him that way. Kids do pick up on those attitudes, yes even kids with disabilities. I insert a small PSA about special needs kids and thinking before you bitch, and get the slap down because life is rainbows and I should learn to laugh about it more. “We all have problems.” Yep, I can remember the time I had to choose which coffee to make in the morning and trying to make it home from work in time to watch my favorite show. God, life was rough.

I do laugh at myself, my problems, my issues and my screw-ups. I make jokes about it all the time. Humor and finding the joy in my life, or at least the sarcasm, is part of what holds me together. My husband left me? I have jokes for that. Don’t have a job because I’m caring for my son? Sure, poor humor is rich. You put down my son (or incite others to do the same)? I will tear your fucking eyes out. Fair enough? Some things. Aren’t. Funny.

Jaden is about to complete his 3^rd year of therapy. All that to relate to the typical world, and because that’s what he wants to do, not because I give a damn about him looking like a “real boy.” And he’s doing amazing, just absolutely amazing and I’m proud of him and the hard work he’s done. He’s doing great until he’s around typical kids who see different a mile away no matter how much therapy it’s had.

How much time have you invested in your kids, or even yourself, to be able to relate to children/people/families with special needs? If a child with special needs is behind already, and your honor roll kids are so smart, why is it so hard for them to learn how to meet a child with Autism half way instead of making that kid do all the work to get up to their standards? Instead of handing out donations at the supermarket and thinking you did something special, why don’t you spend some time teaching your kids what special really is, why different doesn’t mean bad, and how to be a friend?  We’ve invested 3 years and counting. You can match that with at least a few days.

A child having a meltdown at the supermarket doesn’t offend me, by the way, but a mean-spirited child sure does. I blame the parents.

A beautiful wedding and tough conversations

My favorite time of day is Jaden’s bedtime. Not because he’s going to be asleep (though I won’t lie, sometimes that’s nice) but because that’s our time. Quite often we read for a while, on rare occasions we hook up the dvd player and watch a few minutes of a movie, and that’s our time to talk about anything that’s on his mind.

One of Jaden’s happiest breakthroughs is that a few months ago we began to have actual conversations. I’ve waited so long to hear what’s going through his head. He started really talking close to a year ago, right after we switched his speech therapy to Vanderbilt Bill Wilkerson. Because of this I’m in love with his speech therapist and think of her as part of our family. But real back and forth conversation took more time and work from all of his team of superheroes, as his receptive language is on a lower level than his expressive language. He struggles to understand us. The first time he told me a sentence in answer to “what happened today?” I had to act casual and turn so he wouldn’t see me tearing up. Way, way bigger than when he took his first steps.

So as soon as he was able, I used bedtime as a safe time to practice and talk to me about whatever was on his mind. It’s easier then, when his thoughts and eyes and body aren’t bouncing all over the room.

Tonight it was sad. I should have seen it coming maybe, when he asked me in the car “Why do people die?” I talked to him a little about it, trying to walk the line between being honest and not scaring him, while we put away groceries. I could tell he was done when he changed the subject himself and breathed a sigh of relief. I hope the birds and bees question waits for a while longer.

Laying in bed though the subject turned to two things I can’t fix for him; bad dreams then  the subject of our divorce. With tears he begged me again to “be married to daddy again,” with “’What a beautiful wedding,’ do you remember that in the song? ” he asked as he sang the lines from Panic! in the Disco’s  I write sins not tragedies. “’What a beautiful wedding,’ be like that. With the cake, and the flowers, and be married.”

I held him while he cried about it, I held him while he begged, I held him while he asked if daddy was going to marry someone else, and I held him while I told him again there wasn’t anything more I could do about any of it.

On second thought can we go back to why people die and the birds and the bees?

(I lol at how sweet that Jaden thinks the video is about a beautiful wedding…
Yes I gave it away - I’m a bad mom. We love our music!)