a world without boxes

“Pointless bottling emotions of endless frustration cause words to wither in the recesses of the mind. Biting becomes the only way to stay rooted, but causes everyone watching to respond in loud voices of angry fear. Until there is understanding, you are alone in the terrible confusion of other people’s voices that are louder than yours.

Caution is needed whenever we decide we know what is in the mind of another human being.”

Emma Zurcher Long, once again striking a chord that resonates so deeply in my soul that I simply must share it.

Edited to add: Please, please read Emma’s post in its entirety here. I’ll wait. I promise. (And if you get lost in her blog and forget to come back, I completely understand and wish you well.)

I used to say that we – that I – had a responsibility to speak for those who cannot speak for themselves.

I don’t say that anymore.

This is precisely why.

Our responsibility, our mission my mission, is to do everything in our power to find a way for everyone to communicate in his or her own way. And to be universally understood when they do.

People so often ask where I would put the money. It’s always about money, isn’t it?

What would I do with all that money that goes down the rabbit hole in a search for some mystical “cure” for autism. What would I do with it instead?

I would gather the best and the brightest minds: autistic, nautistic*, and everything in between. I would bring them together with one challenge: re-imagine alternative communication. Find what we’re missing. Don’t just think outside the box. Destroy the box. Take the box behind the shed and shatter it until it is no longer recognizable.

Think in a world without boxes.

Every challenge that my daughter has faced has been exacerbated by her inability to communicate and later mitigated by her ever-evolving ability to do so.

To be heard.

To be understood.

To get help.

That’s what I would do.

“Until there is understanding, you are alone in the terrible confusion of other people’s voices that are louder than yours.”

This is why.

IMG_5702

{image is a photo of Brooke, sitting in a chair in the lobby of a city building, watching}

*Brooke’s word for neurotypical

 

7 thoughts on “a world without boxes

  1. Hi Jess! I so often have to go back and read your pages to get me through one of those “horrendous” days as a mom of an autistic child. My daughter is in 2nd grade in a regular classroom…going through the 3rd teacher this year in the same class. It’s TOUGH. Worse, this new teacher has never taught an autistic child. She has never worked with a child that has an IEP. Thankfully, her ESE teacher gets it, and the teacher’s assistant get’s it. My daughter’s “team” have tried to make the teacher “get” my child….so as I go to a conference today to literally try to make her understand what it’s like….I need all the luck, prayers, support and patience I can to get through this meeting. I have made numerous attempts previously, phone, email, quick meeting…etc. My only hope is during this meeting, she actually hears me and hopefully, this page, the one right here….that I will tell her SHE MUST READ, can give her an ounce of understanding of what we go through! She refuses to read up on autism, partake in any further learning…if she doesn’t try, how does she expect to engage with my child. I am beyond frustrated and know in good faith, the principal adores my child and will go to whatever measures we need to do to excel…but really, I just want her teacher to open up & be receptive to helping…not judging.
    Love, luck & peace to you!

  2. This is how I still feel many days still. I have always felt like I live in the confusion of other peoples voices that are louder than mine. Reading your messages atleast let’s me know someone is still out there fighting specialy for the kids. Like my mom has for me specialy when I was little

  3. Jess– Completely unrelated to this post, but I came across this website and thought it might be a handy resource for the next time you get stuck in a bind trying to find one of Brooke’s awesome Christmas wish list items:
    http://www.budsies.com

  4. From a parent with a child still stuck in his box, I couldn’t agree more. Thank heavens for the iPad and programs for speech/communication. Even as he struggles to put things into words, it is a thousand times better than staring at him wondering what is wrong.

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