April is Autism Awareness Month.
But I don't need a month or a day or an event to make me aware. I have every minute of every moment and all of life to be aware.
My son is autistic.
He'd started out seeming so normal. When he was 16 months he toddled up to me everyday when I came home from work and hugged me. He said "Daddy" and "doggy" and "Oh oh" and "oops." And a handful of other words.
All normal. All good.
Then he started not toddling up to me. Not hugging. Not meeting my eyes. He stopped saying "oops" and "daddy" and "boo boo".
He stopped saying all words.
He started flapping his hands, walking on his toes and staring off into somewhere only he could see. Or not. He started rocking and banging his head against walls. Against chairs. Against his fists. And he loved to watch wheels spin, around and around and around and around. There was no end.
Only silence from him and the sound of spinning toy wheels and the thwack of his head against a wall.
I remember the day the doctor told me his diagnosis: severe late onset infantile autism.
I got four more opinions from a psychologist, a psychiatrist, from a pediatrician, from a therapist. I had his hearing tested, his vision tested, his brain scanned.
All the same. Late on set infantile autism at 26 months.
Fifty percent chance that he'd never gain language. Forty percent chance he'd never be toilet trained. Ninety-nine percent chance that he would need to be institutionalized before the age of eighteen.
I love my son now and I loved my son then. When he was born I rejoiced in his life. I had thrilled at the anticipation of someday sharing life's milestones with him, toasting his first big promotion, his first true love, his first child.
But none of that was going to be. The son I thought I had was dead. I was ripped and ruined, mourning my dead son.
Suddenly, I not only mourned a son who no longer existed, but I still had a living, precious child. A child I had never imagined; a child who was challenged in ways I would never have wished for. But a child who was as precious as any and maybe even more deserving and in need of a father's unbounded, unconditioned, unending love.
My new -- autistic -- son was here and totally dependent on me. How scared must my little boy be? How alone, frightened, lost, and cutoff?
My heart cried for my dead son but cried even more for my living son, who was also every bit my boy.
April is Autism Awareness month. So I am sharing what I wrote for him those many years ago when I started the journey with my son to fight his condition; when the odds seemed impossible and deck stacked. But he has beaten nearly all the odds -- he's not fully out of the woods. Maybe no young person is.
But not only does he have language and self-care, but he is doing well in college. I have every hope that there will be many milestones in his life where he and I will be able to toast together.
Oh, my little son
And what do you dream behind those eyes
And what do you see that I cannot
As you drift slowly, and daily, from your laughter
Can you know my love where your aloneness lies
Can a father's warmth melt your cold and wrap you tightly hot
Though you fade and fade like dreams the morning after
And what do you feel behind that stare
And what phantoms chase you where I can't go
Each day more distant from my reaching hand
Can you hear your father's heart crying for you there
Can you hear the prayers that I whisper low
Each day for you in your stranger's land
And what do you love, my untouchable son
And what do you hope in your lonely daze
As you drift and daily more recede
Can you hold on and fight 'til the battle's won
Can you return from out your maze
As I watch and cry and wait and bleed
For you my son
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Compelling, candid, exceptionally well written, 'Dreams of My Mothers' is a powerful read that will linger in the mind and memory long after it is finished. Very highly recommended. -- Midwest Book Review
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