Ok. So it seemed like an obvious and appropriate idea to give some background. I imagine it would be kind of hard to understand what I am talking about unless you have some understanding of the driving forces that inspire what I have to say here.
My son, Monkey (nickname), is 13 years old at this time. He has a little brother who we shall call Mater who is 11. Mater is totally a “normal” kid. He does well in school, runs his mouth too much while he is there, and tends to think he is funnier than he really is whenever we’re in public. He’s a great kid, but the point to take away for now is that he’s a normal boy with no physical or mental disabilities.
Monkey, isn’t as fortunate. When mom was pregnant we did all the right things. Not that doing so deserves a pat on the back, but again, this is meant to give you a fuller picture of the situation. Mom didn’t drink a sip of alcohol, not a drag off a cigarette, etc. And I never pushed her down a flight of stairs… So we did all the right things.
Once Monkey entered this world, it was through force. He had to be resuscitated at birth and had to be transported right away from a hospital in good ol’ Flint, Michigan to Detroit Children’s Hospital. Nothing was positive and a lot of judgment calls had to be made. There is a struggle to understand what the right choices would have been or were to this day. In the end Monkey was born and the first time I saw him he wasn’t alive so much as he was part of a machine. He was the purpose for the many beeps in the room. Surrounded by other newborns in NICU and still stood out in the nursery as a kid with problems. He was on ECMO, a process where many things happen but essentially it was like watching your newborn child get a continuous blood transfusion. Well, it wasn’t like that, that is exactly what it was. The machine functioned as my son’s heart and lungs because his couldn’t. There are many aspects of this particular situation that I will debate throughout this blog, but for now we can say we made the choices that supported him staying “alive” at birth. In the end my son has lived with our, new parent choices, every day of his life.
Monkey, was bloated from fluid build up in addition to the massive machine behind him. It wasn’t close to what you picture becoming a parent would be like. It fit no mold that we understood how to process. We couldn’t hold our son until he was three weeks old. He was born in to this world and never felt the comfort of his mother’s bosom or the security of his father’s embrace. As it was true for him, it was true for us, as we still had no physical connection with our son beyond holding his swollen hands with our finger.
To fast forward we were home six weeks after his induced birth. So basically, in a twisted way, he made it home on time. At the time there was reason to believe he may have health problems related to his heart, but the positive sign was that he went home with no medications. He was considered healthy but would require monthly checkups at multiple specialist for the foreseeable future. Nothing about the brain. Nothing about development. Maybe heart problems.
At six months old Monkey ended up having his left eye removed. It was coincidentally my birthday the day they removed it. Yet another new dad experience you just don’t envision. The significance of course is the eye being removed in the first place. There was a benign tumor that doctors speculated was a result of the intense amount of medication he had at birth causing a chain reaction — yackity smackity. The underlying factor was what we had no way of knowing at the time. This was not the beginning of his struggles but it was surely the beginning of my wife and I learning that the struggle wasn’t over for our son. Yet again, we had no clue of what was on the way but it was the last time I remember his mother and I asking each other when this kid would catch a break. It became a naive question as time moved on– he isn’t getting any breaks in this world.
By age three Monkey hadn’t progressed in a few areas. Family conversations started forming about how famous people of the past didn’t talk at an early age, and those folk tales dropped off one at a time as each birthday came and went. As the years moved on it became evident that my son will never talk. He will, as it appears, never potty train, or show interest in other people or society, or take care of himself. That isn’t to sound defeated its just the reality of his world and ours. He is 13 now as I mentioned at the start of this overview/history. He faces challenges every day related to his problems. These problems reduce his safety and understanding of consequences, which creates a complicated web of strategies and understanding for the him and his family.
This post was a little long but I felt that it is necessary to understand the page overall. This page is not meant to be his life story or list of daily activities. Those things will obviously have to be included for overall understanding of the situation, but they will not be the driving focus. Instead this is my best attempt at taking my perspective and experiences over the years and sharing them with others that may feel they are alone, or maybe don’t know how to process the emotions that come with raising such a child. It’s therapy, it’s networking, it’s education— It’s another step in my life of understanding the effects of autism on personal levels and hopefully in a functional approach when it comes to dealing with the inner turmoil and daily stress that this disability brings to the table.