Super Dadvocate: Tony Mancuso Making a Difference!
PSN: How has your career changed from this?
Tony: I had a job at the time that required long hours and a lot of travel. I made the decision to become a volunteer case manager and worked with nine families in the evening through St. Mary’s Hospital in Long Island. I found it very rewarding. I also found, that for my son, it was an opportunity to make him more important being here. It provided a purpose – everybody has a purpose. Sometimes, that purpose is making other people do things.
I think that validated some of the things that happened to him – that there was a reason for it. I have also learned about what they are not getting, as far as services go, and that is heartbreaking.
After moving to Florida, I took an early retirement because my son required additional care after developing diabetes. He was transitioning out of the age where there were services and was basically becoming a couch potato at home. I wanted him out in the world. Because he requires so much care, it r * became difficult to handle a full-time job and his needs, along with my advocacy work. So, it became necessary to retire early, but I prepared for it.
PSN: Have you ever felt judged because you have a child with special needs?
Tony: I think all families with special needs know they are a part of a unique community. Sometimes society does not truly understand the difficulties faced by the families, as well as the special needs individual who has their own skills, talents, and abilities. The toughest thing to understand is that every special needs individual is a person who can contribute in some way – even if it is just the love of the family. They truly have a profound effect on you. What makes them any less important, less caring or needing of care than any other individual? That is something my son has taught me.
PSN: What are some of your goals for advocating?
Tony: My ultimate goal is that if it is possible tor them to go to college that is terrific, even if it is in the future. They also have a right to have a family, to have self-esteem. I would like to see my son be with peers they can relate to together in a home so that they do not go through life feeling alone. There will come a day when we are not around for them.
Whatever they are capable of doing, they should be able to do that to bring self-worth, self-esteem, joy, love and make them feel wanted and needed. So, that is my goal: To make every one of them feel valued.
PSN: Is there a proud moment or something that inspires you about your child?
Tony: What makes me proud is that he shares everything. He is very mellow – he probably gets that from his mother, not me. He would not hurt a fly and treats others with respect. Even though he does not speak or do a lot of interaction with others, he has respect for people. His smiles are true smiles, and he focuses with such intensity.
PSN: Is there a particular lesson he has taught you?
Tony: Yes, “If your voice is heard, you will get a response.” It is ok to be demanding when you need something, and even though he is mellow, there are times he feels he needs something, and he gets louder until we get him what he needs, such as if his diabetes numbers are too low. He is learning how to make his needs known. I learned this lesson from him and I apply when advocating: “If your voice is heard, you will get a response.”
PSN: Is there something that is available now that wasn’t available with your child that you wish you had?
Tony: Technology. He had a little communication device; it was like a little box. Now, with iPads, he can press the keys and even play music – his own music. I think he’s actually developed a new type of music, his new wave – new Adam. New Adam music! Who knows, he may make a million dollars out of that down the road.
PSN: Is there anything else you would like to share?
Tony: I’m just amazed that Adam is able to work around his disabilities to accomplish things in his own way. I look at his life, and I say, “How is his life?”. I realize that he has made himself a better life. He has been able to pick and choose what makes him happy. He has been an inspiration to me, his family, and others so that we do more for other special needs people. That is a rewarding experience for us, and I thank him for that.
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