First Do No Harm......

As a parent, you learn to trust the doctors you take your children to for the cough, the cold, the scrape, the cut on the knee. You learn the fundamentals of first aid, sadly on your first born and become a bit of an expert by the time you have your second child. Those who go on to have more children probably could perform minor surgery if need be. I personally had to wait until after dinner to be taken to the hospital to get stitches in my chin....I was after all the third born. My mother was tired of all the shinana-gins....I had done this to her many many times. I was the most accident prone of her children. I was quite able to hurt myself on air, or even a cotton ball. So I waited while we all ate our meal with pressure held to my chin so that I would not ruin the evening gnach with my blood....( how rude, you know to bleed on the daily bread....) then we went to the Emergency Room where they knew me well....sigh.
So as I go on to have my own children, I have medical training beyond all the years of hurting myself of course. I had become an EMT when I was a firefighter, then went on to be a Medical Assistant working for doctors at walk-in clinics and private practice.
So when my daughter came to me with the occasional cut or bruise or fever I was unimpressed. This was not what she wanted to hear of course. Looking back I probably should have been a little more sympathetic, a little more Mom like and less clinical. Treat the symptoms get the kid better.....that is my job. That is my job as their mom and as their nurse.
Sometimes the problems got bigger than me, bigger than my training. I became like a Stepford Nurse. Smiling nodding my head at the doctors, "Yes Doctor. I understand."
Trying to let the clinical side of me take over when the Mom in me was screaming out, "WHY!? WHY is this happening to my child?"
I trusted, I did not question and I have done what they have asked. Almost always. Once we got to the point where we knew what was going on that is. The specialists seemed to have a plan. They had big medicines, they had big tests, they used big words. It all seemed to be okay. The thing is, my son does not play by the rules. Actually I think most kids follow this general rule. I think being a micro manager in your child's life is probably a good thing when it comes to their medical care. It wasn't until I compiled all his medical records that I began to see a pattern that perhaps others had missed. Only because they don't have the time, or the care to look at this stuff like I do.
What makes me the most frustrated is that what may have been causing my son the most problems is something that was suppose to be helping him. A medicine that was given to him to help his behavior and his headaches. At our last visit to the neurologist, where I was at my wits end, I listed all the problems we have been having, then tests that my son was having to endure and the ten pounds that he had lost. The doctor said to me, that perhaps it was his doing. Perhaps, it was one of the medications he had been giving my son.
I had been calling with these same problems for a year. I was given new medications. To place on top of the offending medication....never once was the offending medication suspect.
It took getting my son at critical mass before there was action taken.
Really?
Why?
I just can't fathom why this had to occur. I have to take some of the blame. I was driving this bus. I was in charge. Once I looked at the side effects of this medicine it was like a laundry list of what was happening to him. It never occurred to me that one of the things I was giving him every day was hurting him. Yet, I had been through this before.....believe it or not. We know this about our son. There was another medication that backfired on him. A seemingly harmless medicine that others take for allergies caused serious depression in my boy. Once I took him off the medicine he told me he had never felt happier. He had been on that medication since he was two. I took him off of the medicine when he was 6.  There have been documented cases of suicide on this medication. I myself witnessed my little boy say he wished he was dead.
So it should not have been a surprise that he was reacting to a medication, and yet it was.
Perhaps it is because I worked so long for doctors, and I trust and love the profession so much. There are times when I feel like someone just told me there is no Santa Claus. I am at a loss. I know that our medical system is there to help. I know what I am doing is in the best interest of my son, and yet it seems like I continue to place him in harms way.
Is this because the things we know about Autism are still so new? Fifty years from now will we look back on this time as barbaric? We used to put handicap children in institutions....now we know that is not the answer. Perhaps later, we will understand these kids that are not neurotypical can not handle the medications that are made for the typical.
Perhaps all of this "learning" will bring to light a new path, and new way to treat.
In the mean time I have to remain diligent. I have to be more aware. I have to learn to watch for bumps in the road as I drive this bus.
I have, after all very precious cargo.