workers

today we have a social worker visit. One person who could have placed Charlie in a pschyciatric hospital last week. Even though I have taken care of Charlie in the face of utter adversity for 24 years, one voicemail was left saying he was a danger to himself and others and his home relief care was going to be terminated. Don’t mess with an “autistic”  Mom or Dad. The termination of services did NOT happen.

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5:14 am – Enough

Charlie cannot pull himself from the door and he is wanting out. Before dystonia he was a walker- Charlie Walker he was nicknamed. All around town, at nature parks, at the seaside. Loving the motion and getting somewhere. I loved it too. ..Our bubble life is now even worse than it was. We watch others- who walk when they want, where they want, who play outside without worry. Charlie would walk in the middle of the road if he could. When he could. He can’t now. His back so distorted that his left leg does not want to reach the floor. He tries to pull the pant leg up to avoid pain. Wasn’t epilepsy, mute autism, self injury and profound learning deficit enough?

View- out

It is 4:57 am. Charlie is flat on the floor, head propped on the bottom step. The dystonia distorts his neck and trunk, but Charlie adapts to suit his purpose. That is to get out. The illness, the drug cooped him up. It is cold and snowy, but the door handle keeps on calling to him. Over and over- a loop of thought and intention which he can’t contain. At least he has an early morning view out….

cynthiabartlett

I have been up since three.My eldest child, Charlie, is severely autistic- yes another one. We are many- families with autistic children- almost another breed now of family, lingo and culture.

It was three when my son got me up. Recently he has been diagnosed with dystonia, at least, and has just just come through a harrowing go on L Dopa- the “awakenings” drug.

Awake he is right now, even though he is off the drug. Charlie was beside himself, not knowing where to reach, how to understand what he was feeling. Grabbing, pulling, pinching, reaching…..altered and angry, crying as he hardly ever has.. Charlie is twenty four now.

My love for Charlie is utterly of another dimension. Our life so altered is bears no semblance to the rest. There is no rest, no idyll. He had a smile, maybe two in the last month.

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I have been up since three.My eldest child, Charlie, is severely autistic- yes another one. We are many- families with autistic children- almost another breed now of family, lingo and culture.

It was three when my son got me up. Recently he has been diagnosed with dystonia, at least, and has just just come through a harrowing go on L Dopa- the “awakenings” drug.

Awake he is right now, even though he is off the drug. Charlie was beside himself, not knowing where to reach, how to understand what he was feeling. Grabbing, pulling, pinching, reaching…..altered and angry, crying as he hardly ever has.. Charlie is twenty four now.

My love for Charlie is utterly of another dimension. Our life so altered is bears no semblance to the rest. There is no rest, no idyll. He had a smile, maybe two in the last month.