The news that once again he bit his arm
Because something broke–nuclear alarm
Made me want to write it down
Though risking scorn from those unknown
For though we share our children’s trials
We make each other drink our bile.
Yet -why oh why do some improve?
The strange busy mixtures, the banished food?
The mystical subtract and the timorous add
Ironmercurywheatlessmilkbad
Was it a germ? Was it a shot?
Do I test his piss, or analyze his snot?
The hands on, the relentless school
The tinkering, tweaking, the next new tool
If you succeed, then I’m a fool.
The enemy’s the neuron!
The enemy’s the Lupron!
The enemy is Jenny!
The enemy is Lenny!
The enemy is Offit!
And Big Pharma’s profit!
Meanwhile families are in need
Our children need love, potential freed
But my kid is way different from yours
So please don’t open my old sores
We don’t know what’s the deep down truth
We don’t really have sufficient proof
What we do know is, we could help each other
Dad to dad, and mother to mother
And so I wish, for this time of year
Let’s all put away the nasty jeer
Let’s muzzle our hate
And try to relate
Let’s tend our own garden
And not let our hearts harden.
9 comments
I like you.
One of the reasons I had to get rid of the blog was b/c writing the meltdowns (pre age 7) – which are now down to 10yr old mouthies – couldn't be done.
They had to go onto paper.
Hopefully, he settled back down quickly.
This strongly resonated with me today. Especially the last few lines. I can hear the emotion behind your words. Cheers to you, Susan.
Excellent! Thanks Susan!
Just linked to this from my About.com Fan Page on Facebook – scary awesome stuff, Susan!
Lisa Rudy
autism.about.com
after two years on the GFCF diet, taking Johnny off. He only gained one pound all of this year…not goo. He ate three pieces of pizza yesterday like he was starving to death. I love your poem…I have felt like such a loser mom for so long…diet or no diet? what if it hurts him? what if he's starving to death? what the hell am I doing? it's insanity. feels good to be free of the 7$ a loaf bread and the 6$ small box of cookies.
Hi Susan,
You believed what we all believed before 1999, that autism was genetic. Maybe you had believed a lie for too long at that point to throw it all in the trash.
You fell in with evil companions who embellished the lie. They mocked our kids by claiming that Einstein was autistic. They obfuscated the meaning of the word "autism" by calling high functioning Aspies "autistic".
I watched Frank Klein orchestrate all of this Neurononsense, Susan.
My son doesn't bite himself now. He used to do it for hours every day and it went on for years. The screaming that went with the biting drove us all nuts. We persevered because we knew the truth.
I hope you accept the truth someday, Susan. It's not easy to accept that you were conned by Frank Klein and all of his evil associates. Your son needs you to accept the truth.
Happy Holidays!
Your third verse really resonated with me. Those are the questions I ask myself everyday. It stings just a little when I hear about some kid who made a miracle turn-around on whateversupplement or diet. Meanwhile, I am still changing diapers on my almost 6yr old and patching up the house he has destroyed. I wonder somedays how are we going to do this? Are we really doing all we can or should we pursue more? Hubby is happy with how he is functioning right now-why can't I be??! Ugh. I apologize for the tangent I just went on. It has been a bad autism day. I hope you are able to figure out why Nat was biting his arm.
Amen, sister. Our children our different, but we feel the same worries, fears, happiness, and joy. We share so much and can be such a comfort to each other. Peace to you and to everyone.