Sunday, July 15, 2018


We trust society every day with our special needs children and adults. We trust you, and that trust is the ultimate responsibility. These are not just our children, these are society's children.  These are not just our children, these are America's children, the World's children.  Setting aside the fear that our children's disease may ultimately take their lives, we fear that someone might hurt them physically, mentally or abuse them by not taking care of their needs. We fear they may wander, get lost or that someone may shirk their ultimate responsibility for these children, our children.

Let me explain to you how brave you have to be as a parent or caregiver to trust anyone with your special needs children. Here is a picture of a card I pinned to my child when he went to school on one of his first days.

Pinned to his shirt

It's brave to simply put your child in someone else's care, someone else's car or someone's bus. It's brave to trust a teacher, an aid, a therapist, a doctor, a nurse, a babsitter, a surgeon, a friend, a neighbor, and mostly a stranger. It's brave.

Most of society deserves this trust, absolutely.  There is no doubt that there are amazing people out there who enrich the lives of these children, even save the lives of these children who without them these children would not thrive. But, there is always a small fear that someone who is not worthy of this trust will come in contact with these children. It's up to us to care for others.  It's up to all of us to intervene when something wrong is happening, to teach others that this trust is a gift and the ultimate responsibility. It's up to us to be worthy of this trust.

Whenever I am talking to someone who may not be putting our child's interests ahead of their own, I ask for "compassion".  I ask for understanding and help in helping our sons, realizing that our sons have a much greater responsibility as they fight for their lives and their quality of life against a disease, a disease that threatens every day to end their lives. For this, I ask always for compassion and understanding putting yourself aside for the good of another human being, a child. I'm forever grateful for the love and compassion extended to my children when I'm not with them.  Thank you.