Tuesday, September 16, 2014
A Note to The Care Givers....From One Also in the Trenches
Hello Sweet Friend- I am so glad that you managed one free moment and I am so honored that you gave it to me. We never thought we'd be here, did we? We had such plans for our lives. Cleaning poo and dodging bites were never a part of those plans for me. I remember growing up that I wanted to change the world. I got the education. I got the job. I was on my way. Then life came to call. I was enlisted to this just like you. We were called. Life and love demanded our service. We didn't have to stop our lives. We didn't have to jump off our track to success. We made a choice but it was the only choice that our hearts would have accepted.
I know you know how hard it is. I feel like I am stumbling though from one moment to the next. There are no child rearing guides as to what to do when your teenage son is howling on the porch. I tried to figure out what he wanted but he cannot reach the words to tell me. I tried to calm him but he insists that he is "sad". And who am I to redirect and tell him that he isn't? Who am I to invalidate his feelings that he is so loudly expressing? I finally walk away and let him howl but not without saying a quick prayer that the neighbors won't call the police. Sometimes a soul has to howl.
Perhaps we would all be more sane if we howled. Sometimes I want to. I want to howl and weep when I realize where our journey has taken us. It shouldn't have been this way. We sought treatment when we got confirmation of what was happening. I threw myself into treatment plans. I spent hours trying to grab my child back from the land that he sought with his blank stare. We should not be here. News reports of scientific studies all but promised that intensive early intervention and proactive parenting make up the gilded path towards recovery. Except when it doesn't. On top of the day to day struggles, I am overtaken with guilt. Maybe if we had done more....but what more was there to do?
I sometimes want to howl for sadness.
I want to howl when I realize the place where we have found ourselves. We are in the land of inevitability and resignation and pity. There is a difference in the way we are looked at, my son and me, than when we first started our journey. At the start of our journey, we were thrown to the care of twenty year old young women who were full of hope and who demanded adherence to their directives. These sweet things were bent on extracting the autism and cognitive impairment from my child with a syringe of intensive behavioral training. They were made more passionate by his very slow progress and redoubled their efforts to save my son. These sweet cherubs fought round upon round with Isaac's autism. He awarded them with slow...very slow...progress. It was inevitable. They tired. We all did. They left and tried their strategies on other younger, more responsive, children. They were forced to give in to Isaac's autism. I watched as one by one the cherubs left us, saddened in their defeat.
A stoic fog of resolve set in and sucked our hope away. The professionals changed ages and faces. Those who would aid us now were older and wore wiser faces. They knew. This was the best we would get. Isaac's challenges would severely challenge us all indefinitely. We began to look not so much at how we could fight to get him better but rather how we could so order our environment to make things more comfortable.
The sane soul wants to howl for the brutality of resignation. It wants to screech in defiance of the future...both his and mine. It wants to shriek at the inequity.
And yet, I don't join my son in his howl. I am tired. Oh so very very tired. I sigh. I wonder at it all and in the end I resign myself to the stoic advice..."Keep calm and carry on."
I walk in the house and do the dishes. I check on my younger son's homework. I quiz my daughter on her spelling. I clear the table. My hands know the motions and I know the importance of keeping on. In the midst of everything, we must keep moving. My children need me. Isaac will calm himself soon and he will be hungry. He needs my help. If I give up, what chance does he have? Keep calm. Keep steady. Keep moving. Carry on.
To you, sweet reader, I say...Keep On. You are making a difference... just not in the way you may have preferred. You are changing the world. It is the very small act of love that makes a world of darkness crumble. I know you are tired. Trust me, I know. I know your spirit wants to howl. It may, but only for a moment. You are needed sweet friend. So am I. We are needed to show the world that love and steadfastness and care are not dead. We, the caregivers, give the world what it needs to survive. We are the ones who moment by moment save society from the instinctiveness of cruelty. We show what humanity and love are. Love is born in the act of moment by moment care giving. Its a painful process and we are the ones who are chosen to show it. We are strong enough to endure the birth of love. Keep On. We must. We are called. We are needed.