autism street revisited

row_houses

{image is a pastel drawing of row houses, similar, yet different from one another}

In 2011, I wrote the following:

I typed something I thought might be poetic.

And then I deleted it all – one letter at a time.

It was a story about a house on Autism Street – I thought a pretty little metaphor might make it easier to say.

It didn’t.

The truth does not always fit into pretty metaphors.

My Brooke’s autism – our family’s autism – is a fact of our lives. It challenges each and every one of us – none more than my baby girl.

We walk a high wire, arms out, heads up. We search for our footing; we fight for our balance. We scan the crowd. We seek compassion. We sniff out pockets of understanding.

We hound the experts; we beg, borrow and steal the tools for our girl to live the fullest life she possibly can. We pray for acceptance. We try our damnedest to celebrate what we have the luxury of calling her differences.

It isn’t easy. Not by a long shot.

But our neighbors on Autism Street live vastly different lives.

Two days ago, a reader left the following comments on a post on Diary’s Facebook page. (My response is in the middle.)

Her: When your child is getting worse despite all your efforts, no one wants to hear it. I am living in a hospital ER with my son who has become too aggressive to live at home. The insurance doesn’t want to pay for him to be hospitalized, evaluated and hopefully given the help he needs to return home. Even if the insurance pays for hospitalization, we have only one state hospital to take him WHEN a bed opens up. No one cal tell us if what will; happen if our appeal falls through this afternoon. The ER is no place for anyone to live let alone a sensitive Autistic child. When your child keeps progressing it gives other people hope. People don’t want to hear about kids like mine because they fear this happening to their child.

Me: We want to hear it here. Because we want to tell you that we DO hear you. That we keep fighting for resources and laws that won’t allow kids and parents to be in those kinds of straits because they are unimaginably difficult. That we will all put our arms out and virtually hold you and your boy. I’m sorry it’s so damned hard. You’re not alone. 

Her: It literally broke my heart to make the phone call to have police and an ambulance come take my child to the hospital. The system sucks. I wouldn’t wish this experience on my worst enemy. There needs to be a law that doesn’t allow a family to languish in a hospital ER while the insurance can just keep denying coverage to a child that desperately needs help. Unfortunately, this will keep happening as more and more kids reach puberty and adulthood and aren’t magically better and don’t need support anymore.

What is happening to my son and my family is why we need more than “awareness” for autism. Talk is cheap. We need action and supports in place for autistics and their families.

We need compassion, understanding and the tools to teach our girl to fly.

Our neighbors need HELP.

The need it NOW.

They need answers.

They need services for these kids – for themselves. They need a place to turn. They need a strategy – short-term, long-term, the distant future. They need a break.

To those of you who read Diary without a further connection to autism, I am grateful. I beg you though, please, please always remember as you read …

Our autism is just one house on the block, similar in many ways to its neighbors yet not remotely representative of them in others.

Our friends need help.

And by God they need it now.

 

8 thoughts on “autism street revisited

  1. “We need compassion, understanding and the tools to teach our girl to fly.
    Our neighbors need HELP.
    The need it NOW.
    They need answers.
    They need services for these kids – for themselves. They need a place to turn. They need a strategy – short-term, long-term, the distant future. They need a break”.

    You said it all, Jess.

    Love you,
    Mom

  2. Thank you for saying this, for saying it again and again. And for the mother who commented, I am so so sorry that it is so hard, that the supports just aren’t there. There must be something that we can do as a community – us, here, right now to help. A senator we can get to help out… an advocate…. Something? In the meanwhile, lots of prayers. Please know you are not alone in this, even when it feels like you are. Hugs.

  3. I want to tell that mom:
    I want to hear your story. As a mother of a younger child who is generally labelled as “higher functioning” I need to hear your story to remind me that I have sisters and brothers in this community who are a lot more tired than I am. That there a lot of families out there who are facing bigger challenges than we do and they need our help to advocate and push for services, for support, for understanding. I feel like I have a lot on my plate sometimes, but when I hear these stories, it pushes me harder to do whatever I can to advocate or educate for those who are just too exhausted and tapped out to do it for themselves.

  4. This is the first post I have read in a few days. I had sort of checked out for a week. A mommy break from all things Cooper related I guess. Anyhow, I love this post. It is perfect. These are normal moms and dads that are scared and feel so alone. And they need help and support. I could be there one day. Any of us could. Loving your words. Thanks for writing this.

  5. My heart breaks for you and your child. I am praying for God to give you peace and for the autistic community to find a way to help one another. Wish I could give you a hug and lessen your burden. Remember you matter, your child matters and we do want to hear your story.

  6. I am that other mother… almost. Thankful that i DO have insurance, and that my child’s aggression can be (mostly, sort-of, almost) contained enough that I was able to wait for a bed in a Hospital Diversion Unit for him. So that I can (painfully) send my 10 year old Asperger’s son away for two weeks to try to figure out why (oh why) he is spiralling down despite being in a theraputic day school (at district suggestion and expense) with behavioral supports in place 100% of the time, with caring ABA therapists trying to help at home, etc. Every year things get harder, not easier. The older he gets, the higher the expectations, and the more challenging he is. We’ve been teaching him self-calming from every angle and direction we can think of for five years, but he is still either unable or unwilling to do so when upset. And now the anger gets bigger and the violence gets more dangerous and we must get more help.

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