Tuesday, February 21, 2012

Kaden's Struggle

The face of an angel can be very deceptive, or so I have learned. I gave birth to my son, Kaden, over six years ago. He was born a beautiful little boy, perfect and healthy. I did not realize the challenges placed on him. I had the same hopes and dreams as other parents. I did not realize that I was given a child the world sees as special needs. I have a child which is a mini extension of who I am. Through him I am reminded daily of all the things people take for granted. His fight for normalcy may take him a lifetime to accomplish, but I as a mother am raising a fighter.

Early in Kaden’s life I realized that he wasn’t like many babies. He didn’t like to be held. He never reached a milestone when it was to be reached. He did everything at his own pace. When he was fifteen months I discovered he wasn’t meeting the milestones. He was falling way behind. This is where his journey began.
Our family physician was just as concerned as I was. She began scheduling him with specialist after specialist just to learn what was wrong with him. Each specialist had a variety of tests and procedures they wanted to do with him. Before he turned three he had MRIs and nerve inductions done. My heart bled for the pain that we put him through just to get an answer.

My world was shattered the day Kaden’s first neurologist told me that we needed to prepare ourselves for a diagnosis in either a dystrophy or a myopathy. After brief research I realized this diagnosis would never allow him to be an adult. He would die first. The questions kept coming into my mind. How can I allow my son to die? How do I prepare my son to die? Why me when there are so many others who do not care for their children? Nothing is more humbling than to realize that your son could die. I grieved hard for the next six months, when I was given some hope.

The second neurologist, Dr Hammond, says, “It is very improbable that Kaden has a dystrophy. I think he is autistic.” A massive part of me was relieved. My son was going to live, but he would live only in his mind. There would be no escape for him. Physical disabilities are easier to rise above, but there was the possibility that mental ones are never.

So with the new knowledge I was ready to get this diagnosis. I now have a direction to fight whatever is wrong with Kaden, but life had other plans. After meeting with a new team of doctors and having many more tests done, I was informed that he is not autistic. The reason I was given was, “Kaden is too curious about the world around him to be autistic.” This was a new setback, because it closed doors for him and we were nowhere near the diagnosis we needed.

Kaden and I took a much need break on our quest for a diagnosis. After a two year wait we finally saw the developmental pediatric specialist. By this point Kaden had seen his second regression and was out of control for the appointment. Doctor Childers met with him on a couple of occasions before reaching a diagnosis. Kaden was diagnosed with a high functioning form of autism (which he will outgrow), a persuasive developmental disorder (which is why he don’t talk and will also out grow), and his primary diagnosis was a global developmental delay (which changed when he turned 6 years old to moderately to severely retarded). I was personally crushed. I was prepared for the first two diagnoses, but not the third. I always prided myself on being an intelligent person and this was not possible with one of my children.

After receiving the diagnosis we had a better idea of how to beat this and to finally realize Kaden’s limitations. Kaden may never be like other children. He may always be stared at when we go in public and he doesn’t behave as society dictates. It was harder on me to let go of the thought that this was happening to me. I am merely a small part to the equation. This is about him. I was made to be strong to support him.

We received the diagnosis nearly a year ago. He has changed so much since then. He is mellower now. He still doesn’t speak but he will echo what you tell him. My heart melts on the rare occasion that he wants to be affectionate. He is receiving occupational therapy and speech therapy at school and though a private source. His classroom setting allows for a lot of one on one attention. In this school setting he has male and female influence and I think that makes a tremendous difference. I see so much progress with him and I am learning to be cautiously optimistic. We meet with Doctor Childers in a few months. I have my fingers crossed that he too will see the progress.

“The journey of a thousand miles begins with one step. ~Lao Tzu