A Reflection of Aching Joy (A Poem for Jack)

Update: The Facebook version of this video went viral, hitting 1 million views in 4 days, and going on to get over a million more. On the original thread, scores of parents began posting photos of their own autistic children; their “beloveds.” It was a beautiful and inspiring thing. You can visit that thread and add to it here.


This is an original poem and video that I made with my buddy Robert. He’s an extremely talented photographer and composer, and he just got a drone, which we put to good use on the magnificent Seal Rock beach in Oregon. I hope it gives you a better glimpse not only into my inner world, but into the life and personality of Jack. I’ll paste in the text below.

A Reflection of Aching Joy

What do the waves mean, son of mine?
These swells of salty outrage
Over which name tag you ought to pin to your chest:
Are you autistic? Or do you have autism?
Or are you merely affected by this condition,
This blessing or this blight?
With ever shifting definitions?
Who’s right?
I don’t know, and I’m weary of caring.

What do the waves mean, son of mine?
I watch you play tag
With those frigid foam daydreams
As they grow and progress to your toes,
And for an instant, I see them—
Sandcastle Visions
of a typical future.
The kind with graduations
and nuptuals and…
simple conversation about summertime.
But the wave retreats… Recedes… Regresses…
And again your voice is lost in recesses
Of silent staring at meaningless crashes
Of water upon on the sand.

What do the waves mean, son of mine?
I watch you flap your hands
In sines and in cosines,
Over shapes and colors sending shocks of sheer delight.
We’ve tried to flap them with you,
But the magic eludes us,
Our experience excludes us,
From the poems of your palms
And the fables of your fingertips.

What do the waves mean, son of mine?
The brain doctor shrugs at the ripples in your scans.
What mysteries lie beneath
The tranquil surface of your sea?
Are they epileptic jolts
That still your tongue
From singing those melodies you can now only hum?

Sometimes I flail in these oceans uncharted,
And sometimes I swallow the sea
But oh, my dear boy,
How you dog paddle!
Can you teach me how to wade these waters
with winsome eyes
And a laughing chin?
Can you show me how to swim
Shirtless and shameless
In my own pasty skin?
Can I, too, blink away
the incessent splashes
And errant sprays
That haggle over your name?

Because you are not a disorder, my son,
Not a blue puzzle piece
On a clinical spectrum.
But neither are you normal,
You’re a piece of God’s own daydreams
A reflection of aching joy.
No, you’re not normal.
You are… beloved.

21 replies
  1. Georgina clarke
    Georgina clarke says:

    Wow love the words they are beautiful and capture the confusion and anxiety that come with trying to understand autism. But also the overwhelming love we have for our children wgich completely supersedes the need to understand and rationalise. The power of our love over adversity is articulated in the most beautiful and moving way. Thank you. You and your son are beautiful together

    Reply
  2. Maria
    Maria says:

    God has surely blessed you with one of His most special gifts. So glad to see you use your gift of words to give voice to parenting this special young man!

    Reply
  3. Grace Audet
    Grace Audet says:

    I am reminded of a quote heard so long ago that I don’t remember the source, “A poem should not mean, but be.”
    We want to understand the things which stretch us to the breaking point to simply accept. And yet, it seems to me that acceptance is the path through the wilderness that sets us in a position to begin to understand.
    None of us are really, truly “normal” which is a composite of averages. I have .often thought that I would begin a biography, if I wrote one, with these words: “Somewhere between the ‘odd child’ and the ‘eccentric little old lady’ lives the woman who is.” As I grow older, however, I would like to change.”eccentric” to “Christcentric” or something more reflective of where I want to be. Since I’m not a tall person, the “little old lady” part would still fit..
    For Jackson to know that he is beloved by both God and his family is, indeed, a worthy aim, but not the end of the things our Heavenly Father has in mind. Those points of connection, however fleeting are precious & celebrated in families like yours, and that blesses those around you, waiting with you in the hallways when all the doors around seem tightly closed. Keep on knocking, seeking, asking, praying, loving, hoping, and praising Him from whom all blessings flow.

    Reply
  4. Stacie White
    Stacie White says:

    Thank you for sharing this. As a mother of a child with autism, I share many of the same feelings and wonders. Ultimately, I stand in awe of the gift of God’s masterpiece. Though the world judges him as neurologically atypical with learning difficulties and social delays, I know my child is complete and made by The Master’s Hand.

    Reply
  5. Doug Moore
    Doug Moore says:

    Jason, thank you for sharing this. I’m sitting here in tears. I can’t find the right words.

    This helps me praise God. It makes me feel compassion for you, and your son – and also, at the same time, deeply happy for your son, that he gets to feel more of God’s love, through you.

    Your son is so precious. Your love for him is very precious.

    Thank you for sharing. This really blessed me.

    Reply
  6. Camille
    Camille says:

    Jason, this is truly beautiful. Your words take my breath away. I have worked with children and families for 30 years and you have captured exactly the experience and feelings of this life with such blessed souls. I would love to share this in my parenting classes. I think it will give words and hope to many. Would that be okay?
    Camille

    Reply
  7. Clare Webster
    Clare Webster says:

    Dear Jason,

    Like so many of us posting here I too have a wave boy, not a disordered child.He too had a secret connection with the sea which I loved and feared because it was stronger than any connection with us that loved him most.Watching him at the water’s edge was agony and ecstasy.
    Over time,with love and play therapy and holding on to hope as truth, Liam has grown and changed.He speaks now but not often to the sea.Our lives are not “normal” but that, whatever it is would be alien to us.My daughter, the one of three with no diagnosis, likes to say wryly that we are “dysfunctional with the stress on fun”.Whatever,we are like all of you going forward in hope because if we are really looking at the signs our children really are awesome and we get anything from being only observers, it is the chance to practice unconditional love-I think there is no greater blessing.

    All best to your family,
    Clare Elizabeth Webster

    Reply
  8. Gary Kilduff
    Gary Kilduff says:

    Art may be subjective… Truly.

    But from my perspective, your video is without equal.

    I’m not sure many will understand the line “how you dog paddle!”

    But for me it’s a summary of the essence of my son winning…

    Finding a way through.

    Staying afloat in a sea of turmoil sometimes on will power alone.

    Your words are beautiful and some may critique this as an ugly and misplaced line.

    For me at least, it elevates your message to a height I could never reach.

    I thank you from the depths of my soul for this video and the doubtless courage neede to lay yourself bare.

    Much respect.

    Gary

    (…and Harvey, who I dearly hope and pray will gain the skills to read your words for himself, one day soon, and tell me what it means to him.)

    Reply
  9. murdoch
    murdoch says:

    Beautiful poem that reaches out to so many. Sometimes I am blessed enough through facilitated communication to a a glimpse from the inside. This was written by my seven year old non verbal boy.
    Being very tired
    For God understands my struggling
    The struggle to be autistic
    The injuhstis (injustice) of my body
    It rules my living
    The grey noise
    Inside my head
    You don’t get to choose
    For you he tell
    Be autistic
    Find your way
    Find yourself there
    For the beauty lies
    Inside

    Finn -August 2016

    Reply
  10. Slobodan Ivanković
    Slobodan Ivanković says:

    Just joy and joy and always joy! Dear my lovley friends of God. Becouse, The God is The God of all fathers and they sons and doughters!
    Warm heart, from cold room in Serbia touching you!! P.S Take care about your children, they are awesome and great person, i love them all with all my warm heart. By, by from Slobodan💝

    Reply

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