I can’t breathe, there is no air. It’s as if someone has set a weight on my chest and sank me into a dark abyss of water. All I feel is fear, and panic for what is unknown to me. These were my feelings the first time I heard the words “You’re son indeed does have moderate to severe autism” by the neurologist. My family’s journey began when my youngest son was around six months old. Matthew was my third and last child. At six months I was becoming increasingly concerned with some of his behaviors. He disliked facing me, he detested changing his pampers and the fits of rage and crying that occurred during the nightly ritual of bath, lotion and dressing were something I had never seen in my two older boys. A mother knows certain things.

I began discussing my concerns with a friend who worked at Perkins School for the Blind in Boston and she helped me to see I wasn’t just overreacting. By the time my son was 12 months old, I knew deep in my heart something was going on. By the time my son was 14 months I began asking his pediatrician for a referral to a neurologist. I cannot tell you the struggle that ensued between the pediatrician and me. I began my own early intervention with the help and guidance of my dear friend, who taught me the benefits of sign language and the picture exchange communication system. These were interventions that I felt were not in anyway harmful to my child and could only help. That they helped is an understatement. It took until my son was 22 months old, and the threat of a lawsuit before I got the referral necessary to see a neurologist. I went prepared, and anxious. Sure enough, he confirmed my deepest fears. My little baby, had autism.

What followed is a long and involved story, suffice it to say, I worked almost as hard as my Matthew to educate myself and get him the services he desperately needed. It was no easy battle, but it is paying off. Matthew has made steady progress, and makes tiny gains everyday. Along his journey is his family, for the roller coaster ride. Quite frankly, sometimes we, in turn, want to get off. But there is no getting off; we’re on it for the journey.

It is this journey that has enlightened me to the struggle and sacrifice we families (willingly) make to ensure the best possible care and services for our child, that they may have the best possible chance for an independent future. My experience with the Intermediate Unit (IU) in my district has been mostly unsatisfactory. With the exception of a few dedicated and genuinely caring individuals at the IU, I have seen nothing but a serious lack of interdepartmental communication, lots of passing the buck, misinformation, and poor managerial skills. I have spent more time getting the correct information to the right sources than the professionals who are designated by my community to support my family than they have themselves. It had reached the point that I was disgusted and fed up with their mishandling of my child’s course of education and blatantly told them so. I have had to lead those who are supposed to be leading me on the path to a brighter future for my child. This is how the A.D.L. Center was born. It started as a conversation about an idea, and is now a legally registered Non-profit organization in the state of Pennsylvania.