A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts published in May, 2014

My all time best friend went with me to Autism Awareness Day at CitiField last month.  On the way home, he started composing a poem to get at the communication & social frustrations that our autistic kids must feel.  I share it with you now:

Beneath the Distant Tree
The firmament above is bright with stars
Down here the earth is bathed in nascent light
The future stretches out so very far
But the present somehow simply isn’t right
I spread my wings unable to pierce through
The fragile shell that shields me now too long
So much of me to share so much to do
The spirit willing the wiring all wrong
Every face I see is foreign to me yet
Familiar in an unfamiliar way
They talk to me although I cannot get
The meaning in a single thing they say
And all I hear is everything I hear
And everything is too much to be heard
A maddening cacophony unclear
A shrill mélange of music, noise and words
The world presses in around me
Yet is oddly out of reach
I call out but the faces
Cannot comprehend my speech
So my mind instead turns inward
As my eyes look out to see
A peaceful patch of wind-blown grass
Beneath a distant tree
My head a swirling swarm of thoughts held fast
A humming hive of sightless wingless bees
Aspiring only to take flight at last
Like bubbles blown unfettered to the breeze
But for all I try I cannot quite succeed
My thoughts condemned to ever be confined
An inner world to which I now proceed
And leave that othe noisy world behind
Every face is so familiar
Yet still foreign to this day
Their voices no more likely
To bring sense to what they say
For all they seem to call to me
I only wish to be
On a peaceful patch of wind-blown grass
Beneath a distant tree
The firmament above is bright with stars
Down here the earth is bathed in orange light
The future no more seems so very far
But the present somehow never felt so right
I fold my wings and close my tired eyes
The fragile lids that shield me from the dark
So much of me a mystery unrealized
Yet still the spirit searches for that spark
All the once-familiar faces
Are now drifting out of sight
All the voices form a whisper
Slowly fading with the light
As the world slips into silence
My true self may finally flee
To that peaceful patch of wind-blown grass
Beneath the distant tree

Jim Cummings

May 2014

 

This is a good article about the need for parents to be advocates for their kids.

http://www.huffingtonpost.com/arshya-vahabzadeh/autism-_b_5307391.html

I think it’s best to err on the side of caution and wait for something that doesn’t come with built in demons of its own:

 

Widely Used Autism Drug Carries Heavy Risks for Children

Risperidone, the first drug approved for children with autism and the most widely used, improves some behavior but can have severe side effects such as sleepiness and weight gain.
In the final analysis, researchers say risperidone should be given with caution, only for children with the most serious symptoms and only after other treatments have failed.