passed right by – and never knew

*

Yesterday afternoon I sat talking with a friend. Ok, maybe said ‘friend’ might be more accurately described as a ‘therapist’, but let’s not get caught up in details. Though when I tell you that he is a man and he actually actively listens to me for AN HOUR – like sixty minutes IN A ROW then I guess you can come to your own conclusion about the nature of our relationship.

Anyway, said paid-to-listen-and-offer-helpful-advice ‘friend’ made an observation. He said that I tend to be very open. That I share a great deal of myself and my family’s story here every day, but that I also seem to be pretty damn open in real life as well. I couldn’t argue. I’m a sharer.

But there’s a reason for that, I argued.

By way of illustration, I told him about a post I wrote not long ago called I See Myself in which I described the visit to my doctor that ultimately led me to find a friend to whom I give money to listen to me talk for an hour at a time.

I told him that in that post I had laid bare the painful realization that many of my daughter’s challenges were also my own. That I’d admitted to my guilt – as irrational as it may have been – about the overwhelming similarities.

But then I told him about the response to that post. The nods of recognition and understanding that poured into the comments that day – the ones that then led me to write another post the next day called Me Too. The one where I said the following.

*

for when we dig the deepest

reach and reach to the farthest corners

to unearth the darkest treasures

give words to the whispers

lend them a loud, clear voice

then

and only then

do we take steps toward the light

and when we take that treasure, dark and cold as it may seem

solitary

precious

heavy

so god damned heavy

and ours

ours alone

how could anyone possibly understand this thing?

and plop it down

in the middle of the village square

defiant

here it is, damn it

this thing i’ve found

here it is

it drops with a thud

shakes the earth

kicks up the dust

yes, here it is

quiet

deafening silence

and then

a voice in the distance says

wait

i have one of those too

and with a thud

another drops to the ground

then another

me too!

THUD

and me!

THUD

yes, and me!

and suddenly it’s not so precious anymore

so heavy

no, it’s just one of hundreds

thousands

millions

unique perhaps

but not solitary

not alone

never to be alone again

-

Thank you.

To everyone who said Me too.

To everyone who dropped their treasure in the village square.

You – WE – are not alone.

Thank you.

*

And I told him how much I think that means – that moment of awareness that we are not alone. That moment when we make a connection and recognize ourselves in someone else’s story. And how much more it means when we live the lives that we do – so often so dramatically different from everyone we come across – so alien to those we meet in our brick and mortar lives. How the moment that someone says, “I live this too” can be life-changing.
.
And the thought brought me round yet again, as it always done, to our kids. To THEIR need for connection. To THEIR need for that precious awareness that THEY are not alone. And how much more that means when THEY live the lives that THEY do – so often so dramatically different from everyone THEY come across – so alien to those THEY meet in their brick and mortar lives. How the moment when someone says, “I live this too” can be life-changing for them too.
.
And I thought again about the words that so many people still contort themselves to avoid assigning to their children, to themselves – Autism, Aspergers, PDD – the words that they dance around and replace with others that they find less threatening – developmentally delayed, sensory challenged. And I thought again of how reclaiming the words – using the labels not to ostracize nor set aside but to connect, to create, to provide a roadmap to a village of their own might not just be life-changing, but life-saving.
.
Last night a friend posted an article by a young autistic man named John Scott Holman, who had gone undiagnosed for years. His journey had led him to abuse a wide variety of street drugs, ultimately depositing him somewhere just west of Hell. He had attempted to kill himself because he had become convinced that he “was a waste of oxygen in a cruel and meaningless world”.
.
And then – finally – finally – he was given the single word that led to his salvation.
.
“Discovering my autism has been my saving grace,” he said. “I will never forget the overwhelming emotions that poured over me when I first read about Asperger Syndrome in the DSM-IV. I’m not broken. I’m not bad. I’m just autistic and that is alright!  Since being formally diagnosed, I’ve come to understand and embrace myself for the remarkable person I am.”
.
In the word, he found himself; he found his purpose; he found a community.
.
Last week, my friend Sara shared a favorite Shel Silverstein poem. I’ve read it countless times over the years, yet this time it brought tears to my eyes. Because in eight short lines – in thirty-one little words – it says it all.
.
This is why I believe in disclosure, why I share what I do and why it is so important to me for my girl to know exactly who she is, scary words and all.
.
Because those masks look awfully heavy, don’t they?

24 thoughts on “passed right by – and never knew

  1. So well said. A community of their own where they feel like they really belong is what I look for every day for my children. I find myself seeking out other autistic children for them to play with. My oldest (almost 8) tells me he feels more comfortable being with kids who think in the same way he does, like at his social skills group where all the children have an autism diagnosis. My middle daughter (age 5) can’t wait to be old enough to get in there as well. But the thing I fear is that I won’t be able to find such a level of community for my youngest, most affected daughter (age 2) as she is also deaf with several other impairments. I feel it is so important for them to be around other people who “get it.” Just like your earlier post about a place where they feel “not wrong,” I want them to have that sense of belonging as early as they can, which is exactly why it is important that they understand their differences, “scary words and all.”

  2. “This is why I believe in disclosure, why I share what I do and why it is so important to me for my girl to know exactly who she is, scary words and all”.

    That’s why you’re able to give so much to this community of great people–both the adults and the kids. Thank you so much for being you, Jess!

    Love you,
    Mom

    • (I couldn’t click through to thank you for your comment on my blog but … THANK YOU.) I love how the “from” on my screen just said, “Mom.”

  3. Long before autism, I believed that we are meant to turn our negative experiences into positives by sharing them to help others. There is such a liberation, a burst of freedom when this clicks within our consciousness. Just think about it. For eons people have been asking themselves, “Why?” Why does God let this happen to me. I believe that I’ve found the answer.

  4. That was such a powerful poem. After I let it digest for a minute, the sadness of it hit me…. so many walk alone, looking and longing for someone, anyone who they can identify with.. but too often they hide the very person they are because they want the connection so badly and they feel a need to “hide” themselves in order to find it! (fantastically long, run on sentence – I knew you would understand)!

    I’m so glad you don’t hide yourself, you have opened up a world of understanding for me, and I am so happy to come here everyday and never feel alone. Thanks!

  5. Pingback: a diary of a mom « DragonMommie's World

  6. Pingback: a diary of a mom « DragonMommie's World

  7. I’m a “sharer”, too. Thanks for taking off your mask so those of us who are blue can take off ours as well. I cannot express what it means to me to know that we’re not the only family in this world that struggles with the anxiety, the fear, the frustration, the meltdowns, the school woes, IEP meetings, etc.

    Thank you.

  8. Amen. This is so powerful and so important. We really ARE all so much more alike than we realize. Sure, circumstances can make things look very different, but on the inside, we’re all pretty much the same. We want to be loved, accepted, feel successful and connected to others. Those masks are unbearably heavy sometimes. xo

  9. I have found some of the best friendships I have are with other people who have children with Autism. And I think my daughter senses it too, when she’s with kids like her. I love seeing Cymbie and her friend Jordon play together! They do bubbles, and they rock on the couch together watching Yo Gabba Gabba. They even play, in their own way. We *need* that. They need that.

  10. thank you, as always for your openness. It is liberating to read the thoughts that sometimes float just at the edge of my own conscience… Thank you for your virtual sisterhood…The comfort in knowing that I can push a button any hour of the day and connect to others who GET me and my experiences is immeasurable. It has also allowed me to meet online the mothers I otherwise might not have met in my physical day-to-day activities who have children with whom my 10 yr old can connect. My daughter is beginning to build her own community – some local and some as pen-pals, and that is miraculous to watch. She is lucky to have several close NT friends who accept her completely as is. But she still craves the company of those she instinctively trust as like her in ways she can’t always articulate – they may all present differently, but they all struggle to meet the expectations of others, to fit in, to follow the drummer and not wander off in search of a flute… If ever Brooke wants / needs / is ready for an email friend – just drop us a line. I know a 10 yr old who would be THRILLED beyond measure to add to her sisterhood.

  11. Sharing is the only way that others will have the chance to understand what our children and we are dealing with day to day. Thanks for all your sharing.

  12. I wholeheartedly agree Jess. I am open about all of it. I use all the “A” words that apply to my son (Autism, Aspergers, ADHD, Anxiety) It has taught my son to use them and be just as open about it. Being open is the only way to begin to feel close to someone. Thank you for sharing this.

  13. Pingback: What You Don’t Show, You’ll Never Know « Inside-Out Peace

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