we heal

I woke up late this morning. Even before I’d opened my eyes, I felt it in the air – heavy, slow, dense.

Even as my girl crawled into bed with me and launched into the middle of a script – always start in the middle and it will be the beginning – I moved as if in thick, brackish water.

Overwhelmed.

Sad.

The news is too much.

An autistic teenager is doused in feces and urine in Ohio. A crude prank, they called it. A cruel joke.

I want to curl up and make it go away.

What kid could ever, ever deserve that?

I walk through the hallways of Brooke’s middle school. I am wary. Afraid. I see one of the kids from her substantially separate class. He is wearing a t-shirt that catches the eye of some boys in the hallway. They stop him and say something. I freeze in my tracks and watch. I can’t hear them over the din, so I watch their body language. I can’t tell what’s happening. I exhale as they all go separate ways.

I wasn’t afraid before.

I am now.

In Florida, an autistic sixteen year old is invited to a party where he is beaten, then forced to walk to the spot where he finally collapses.

He thought they were his friends.

I want to throw up.

Yesterday, Katie excitedly told me that she’d seen Brooke outside her school when she was at PE and Brooke was outside.

“She ran up to me and gave me a big hug,” she said, “It was kinda awesome.”

I asked if everyone had been outside. A fire drill, perhaps?

“No,” she said casually, “just the Sped kids.”

A plea bargain. Probably a good thing to spare the family – to spare Issy – the unthinkable pain of a trial. Of hearing the details of how her mother tried to kill her.

So yeah, avoiding trial is good.

But attempted murder isn’t child abuse.

It’s attempted murder.

The air in the room is nearly unbreathable.

“I’m going to watch my new Elmo Summer DVD,” Brooke says.

“Will you come watch it with me?”

It’s an invitation I can’t refuse.

“Give me a minute, baby.” I say, “I’ll be right there, promise.”

I take one more look at the screen in front of me.

I don’t know what to do.

Anger reignites the embers.

Fires burn out of control.

Fear.

Defensiveness.

Re-entrenchment.

We are broken.

We are lost.

We are afraid to ask for help.

We are afraid to say that we’re not okay.

And that’s the most not okay thing of all.

(It’s ALWAYS okay to say that you are hurting. It’s always okay to say that you need help. It’s more than okay. It’s necessary.)

I read the words that I wrote last night, searching them for something.

For various reasons (that I have no intention of rehashing here), this has been a rough couple of days for our (extremely loosely defined autism) community. The truth is that we are broken. And that we have been for a long, long time.

We have been hurt. We have hurt each other. We have hurt ourselves. Worst of all, in so doing, we have hurt our community’s children — OUR children. And they deserve — and need — better if they are to survive. Literally.

In one of my favorite songs, Pat Green sings, “When the wolf is at the door / You don’t have to guess what I’m against / If you know what I’m for.

You know what I’m for here.

The universal right to SAFETY.

Which can only be realized as a result of our full, absolute, unquestioned recognition of every single human being’s …

Dignity.

Equality.

Humanity.

Without.

Exception.

We don’t have to silence others to make ourselves heard. We don’t have to be against one another to be for our children. We can’t be for our children if we are against the adults like whom they will soon grow to be.

We can do this.

We can make it better.

Let’s, just this once, show the rest of the world how it’s done.

#ThereIsNoSafetyWithoutEquality
#ThereWillBeNoChangeWithoutRespect

Whatever it is that I’m searching for, I don’t find it.

I think of the mom who said last night that she was afraid. That she couldn’t figure out how to help her child through his violent rages. That she was afraid for her other child. And for herself. But most of all, for him.

That she was afraid to admit that she was afraid.

I pray that this helped. “Even if one thing resonates,” I’d said, “it might help to view his environment from a different perspective.”

I see a new comment following mine. My dear friend, Ib, to whom I’d turned last night for help.

Dear Not OK,

You have done the right thing by being real with yourself and safe enough others, not trying to “be a hero” which heartbreakingly does not end well. Honesty wins and I am praying for you.

I am an autistic adult who in a way understands. It is possible to reorganize violent impulses – though difficult – but much more difficult alone, or living in a sea of lies. You are making all the right choices to speak up and seek community now.

If you want to contact me privately, I care to listen.

Love and solidarity, Ib

I care to listen, she said.

Love and Solidarity, she offered.

The weight begins to lift.

I hear Elmo start, then pause. I go to close the laptop, but a note catches my eye. You might want to share this post it says. I flinch. The posts that have found their way to my inbox in the last 24 hours have not been ..

I let the thought drift as I read.

Leo is happy. We don’t hear this enough about autistic kids, since messages about autism tend to center on pity and prevention. Of course many parts of Leo’s life frustrate him, as when he can’t communicate with others fluently, which limits his independence. But overall, he is a contented kid.

A contented kid.

I hear my girl’s happy squeal echo through the kitchen, as she makes her way to the den.

I close the laptop and leave it behind.

I sit with her on the couch, reveling in the gift of sharing these few minutes before we will walk to school. Today marks the last day of my two-week vacation from work. The last of these glorious opportunities. I try not to think about their end.

Elmo is talking about skin. Brooke rubs my arm. “This is the skin you’re in,” she says. “You should love it.” It’s a delicious play on one of her favorite books.

“I do,” I say. “Do you love the skin you’re in?”

“Yup yup yup yup yup yup,” she says, a perfect imitation of a Sesame Street Martian.

Elmo is now moving at triple speed as Brooke fast forwards to find whatever it is she seeks.

She giggles as he gets ready to open the door. She pauses the television. “Watch this!” she says.

I smile. My God, I will never, ever tire of those words.

I promise her I’m watching.

Elmo goes bug-eyed as cameras flash in his face. Brooke pauses the television. She’s laughing too hard to speak. “Look … at … Elmo!” she says.

Her laugh is contagious. I can’t help it. I crack up.

There’s something on the screen, Mr. Noodle chasing down a camera-shy piece of cheese, a talking stalk of broccoli … but I’m watching Brooke.

Her laughter rolls over me in waves. I dive in.

Thank God for that laugh.

I suggest that next time we take a picture, we should say, “Broccoli.” She agrees, and hands me my phone.

“Selfie?” I ask.

“You don’t have to ask,” she says. It’s a script from somewhere. Probably Elmo. I don’t know and I don’t care.

We take pictures. We make funny faces. We laugh. We say, “Broccoli!” We laugh some more.

We heal.

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{images are very silly selfies of me and Brooke making funny faces and saying, “Broccoli.” I highly recommend it.}

15 thoughts on “we heal

  1. Tears. Damn. It’s been a while. I don’t know how it is that you so efficiently fish around in my brain. I’ve been hanging in the same spot…angry, afraid, and tormented by the what ifs, while someone else’s child is stripped of his dignity in a heartbeat and I fear for my own. Our own. Because they’re all ours. I have no answers for even where to begin, but something must be done. This new movement of momentous importance chugs on with the momentum of molasses. Change is slow in this society as generations evolve in their thinking. We need a faster cog in the wheels, a new vehicle, something. Our children, our community are depending in it.

  2. This resonates within me so deep . . . Sometimes I am so afraid when my boys leave the house, they are adults and I have to let them be that as much as they can be, but I worry. Sometimes they attract attention, I have to watch them venture out and hope and pray they are safe. It’s a leap of faith. They are happy, I try to take my cues from them, but the mommy voice is loud sometimes :o)

  3. We are lucky because my son has yet to be the victim of a cruel prank. But how much longer before our luck runs out?

    I shared a link about Kelli Stapleton and got a response from a disabled adult talking about how next to impossible it is to find services for disabled adults. My response was, So what do we do? You make it sound like the only option available is what she tried to do!

    I talked to a friend, who told me to “do some research” . . . and all I could think of was that in my state, the waiting list for services for disabled adults is NINE YEARS LONG. And that we don’t have the resources to pay for services. And that I don’t trust the safety net to be there when we need it.

    We also have serious debt from my failed attempt to go back to school so I could get a job to pay for our son’s care when he needed it. Instead, I have dug us into a hole that I see no way out of. This week, my card was denied because we were overdrawn. After doing some transfers and paying off our auto insurance, we are left with $85 in savings and about $250 in checking.

    I also have my own health problems: back pain, adrenal fatigue, depression, and a chronic bladder disorder. I’m on several prescription meds and several supplements, and we are to the point where I can’t afford all of the supplements I’m being told I need.

    I’m afraid to ask for help from anyone, because I’m afraid of being told ‘no”. When my son was younger, I would ask for people to watch our son so we could get counseling . . . and was told “no” (for various reasons) so often that I stopped asking. I am beaten down from hearing “no”, from financial problems, from health problems, and from worry about the future. We do see a counselor once a month, and the next appointment is Monday.

    I am a person of faith, and I should have faith, but being told to “have faith” or “let go and let God” just does not help. I nearly saw blood when someone told me “just give it to Jesus”, because I.do.not.have.the.slightest.idea.of.what.I.am.supposed. to.be.doing.when.I.do.that.

    What do we do? What do *I* do?

    • I’m going to skip my sarcastic answer about God paying the bills (as in, could you ask Him to pay mine too, please) as i don’t think it’s particularly helpful here, however, I do think that there is something to be said for Faith that the bigger things will be okay.

      I think the first thing that you *do* is to lay all of this out with the counselor on Monday. Every bit of it. And then work together to come up with a set of concrete plans – for finances, for health, for respite.

      Talk to the counselor about finding new avenues for assistance – state / federal disability plans you may not know to tap and the like. There might be programs available now for which you might not have qualified in the past.

      You’ve got the counselor. That’s big. And I’m glad that you prioritized it and made that work. Leverage that resource for all it’s worth. It’s a great place to start.

      Hugs.

  4. Jess – I can’t even begin to tell you how important this essay is to my family right this minute. The link to the “We Are Like Your Child” article is so significant for my son as we prepare to revamp his IEP next week.

    Thank.You. You are a gift.
    Stella

  5. My heart goes out to people who are different everywhere. And for all they will endure. This was such a beautiful post. Thank you for sharing. I’m still so amazed how cruel kids can be even with so much knowledge and awareness out there. I feel like knowledge is so important but when it comes to teaching decency and respect it tends to get brushed aside as if it’s old fashioned. Someone once told me that today’s kids are so strong willed because they have to be strong adults in the tough world. I believe that what we teach at home will affect the future, and I hope you know that all your efforts in mothering will create strong children. It won’t stop the bully’s but your child will always be the better for it.

  6. These stories are my worst nightmare, the scenarios that play in my head at night, that both break my heart and ignite a fiery anger the likes of which I’ve never before felt. My darling, adorable, funny, adorable (did I say that already?) 3yr old son was just diagnosed earlier this summer. Out of all the challenges he faces and will face developmentally, what breaks my heart is the cruelty that I know he will likely face at the hands of his peers as he gets older. And every time I tell myself that kids are more aware and more tolerant today, I see a story like these.

    My teenagers have had autistic kids in their classes through the years, and my younger daughter in particular has always been the ‘protector’, the friend. I remember when she was in kindergarten, ‘Danny’ latched on to her – he must have sensed her gentle soul – and she’d tell me, ‘sometimes Danny gets on my nerves, Mommy, but he is who he is and I would never be mean to him. He doesn’t mean to be annoying. I always let him play with me because some of the other kids won’t play with him.’ I was always so proud of her… little did I imagine she’d one day be sticking up for her little brother the way she did for ‘Danny’.

    Here’s how I try to cope… Given that it’s human nature to dwell on and report on the negatives in the world, I figure that, for every cruel prank, there are hundreds of kindnesses done every day, quietly, without recognition, without going viral, without being reported on. And while even one cruelty is one too many, remembering that there are also a great many kindnesses out there every day helps me to sleep at night and gives me hope that my son will run into more kindnesses than cruelties as he makes his way through the world.

    Thanks for everything you do, Jess. You’ve been an incredible find for a new autism mom.

  7. May Gid bless all the mums with their loved children on the spectrum.
    We had a difficult night lady night, I’ve just booked my 15 yr old aspie & myself in for a pedicure. Life here in Melboure, Australia is tough for us, but you have helped me find perspective.
    Thank you, Helen.
    Aspie Carer on Facebook.

  8. Underlying all of these awful experiences is the apparent disrespect for another human being. The ones carrying these sickening acts deserve to be punished, named and shamed. There is NO EXCUSE For this….What about the parents of these individuals??? As someone said to me recently more and more I see that parents are looking to others like schools, the government to raise their children and that is a very slippery slope.

    We also need to look deeper at where these ideas come from-popular culture like certain movies, tv shows….our virtual world…

    It has just sickened me on so many levels….

  9. Years ago I was at a park with my friend, whose beautiful daughter had just been diagnosed with PDD. As she joyfully played with the sand, I felt jealous. Being neurotypical yet heavily engaged in fantasy for most of my life, I longed to be as engaged as she was at that moment. I mentioned to my friend that I’d love to have that ability, but it certainly came out wrong and, I’m sure, hurtful. I’ve been sorry about that moment ever since, but now I understand it, thanks to you and Emma. I know we have to be very careful with others who have just recently had their lives turned inside out, and I’m learning to be a bit more filtered and less of a loose canon.

    Yesterday at work I had the chance to direct a newly diagnosed child’s mom to your blog and Emma’s. The nurses said it would be inappropriate, that the child just started a school and let them guide her. I understand their point. They don’t know me or the blog. It’s just so important for the word to get out there, that we were all wrong and that there’s another way to look at autism. I need to get involved somehow. I’m too old to change my career. I’m just thinking out loud.

    Thanks for engaging me 🙂

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