When I look at this picture of my son I see a child filled with joy, love, hope, playfulness. I see a child who had his whole life before him. I never could have imagined that this child, my child, could and would be diagnosed with a devastating mental illness by the time he was ten years old. “Not my son, never in a million years. How could this beautiful child, my child be afflicted with schizophrenia?” That’s the question that kept running through my head as I sat at a table surrounded by psychologists and psychiatrists just three short years ago.
It was beyond devastating, it was beyond surreal. I felt the tears streaming down my face. I felt my hand being squeezed by the woman next to me. I saw the pity on the faces of those explaining the diagnoses to me. I felt my world crumbling, my son’s future growing smaller. It was at that moment the entire world came crashing in around me and I knew the life I dreamed of for my family, myself, my child, was lost. I just kept thinking “This isn’t real. This can’t be happening. They’ve made a mistake. They have no idea what they’re talking about.” It seems so cliche, but these are the thoughts that swirl through your mind as your’re being handed a life changing diagnoses.
Once I was able to gather myself I needed answers. I needed help and I needed to know what direction to go in as far as care and support for my son. I had always been told by doctors that my son was Autistic, and now they’re saying he has childhood onset schizophrenia. Where do we go from here? What does the future hold for our family now? Those are questions that wouldn’t be answered that day and questions I am still struggling to have answered.
Since my son’s first diagnoses at six years old of Aspergers Syndrome (he has had multiply diagnoses before schizophrenia). I have found that our mental health care system, our schools, and hospitals are more broken than the people they are here to serve. I have needed to continually advocate for my child within the maze of all of these systems. I have needed to educate myself and others. I have had to take my child to different states, doctors, schools, all in an effort to get him the appropriate care and support he needs and deserves. It is a persistent and continuous struggle. A struggle NO parent should have to endure when they are already facing a plethora of challenges at home with their special needs child. There is just so much that a parent, child, and family have to go through when given any diagnoses for their child. Why should one of those challenges be the overwhelming stress of trying to receive much needed guidance, services, and support?
I’ve thought often about writing and sharing the experiences my family has had over the years. Dealing with the challenges of having a family member with a severe mental illness or Autism can be a massive daily struggle. I’m not much of a writer though and as you can imagine, at times, it’s difficult enough to manage through a day, let alone keep a blog. I have seen though how many other families are struggling with trying to find help. I have listened as other mothers and family members have spoke of the isolation, desperation, stress, frustration, hopelessness and fear they feel and experience daily. Agonizing over what, who or where to turn. All the things I myself and my family have felt and struggled with over the years. I got to the point of feeling that if maybe I could help just one family who is in a similar situation, then it would be worth keeping a blog. So here I am. I hope that other families dealing with these similar challenges will also share their struggles and ways they have manged to find help and support in their communities.
Please always feel free to ask me questions and if I can help in anyway I will.