Autism: Surviving and Thriving

Fourteen years ago my youngest 3 boys were diagnosed with autism within a 9 month span. Devastation and grieving followed. Doctors gave me little or no hope, but they didn't know me very well. I refused to believe that my boys were doomed.

My boys are now young men, adults with autism. They are thriving, but every day presents its turmoil and challenges.

My family: husband Mike, sons Ryan 23 yr, Nicholas 21 yr, and Cameron 18 yr. (Ryan and Nick have autism; Cam has recovered from autism.) Our oldest sons, Michael 34 yr and Stuart 25 yr, moved out of the house. Ryan has also moved out, and is still working towards complete independence.

Monday, June 3, 2013

Prepping for Surgery

I tried to describe this experience to a friend:  The "something that may be cause for concern" is a "nothing to worry about" that "needs surgery".

I've seen a few healthcare professionals recently.  At every appointment, I'd hear the same tip-toe dance.  As the medical visit progressed, the doctor or nurse became very reluctant to speak.  The above quotes were uttered by these medical professionals, just not how I have strung them together.

This reminds me of all the testing Ryan went through before being accurately diagnosed with autism.  Ryan was two years old when we started seeking medical help.  At the age of 5, he was initially diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified), meaning there was something going on, but the docs didn't have a clue.  As the years passed, ADD, ADHD, OCD,  and speech delay were added to the list.  Doctors couldn't agree.  Just for humor, I added ABC and XYZ to the list.  When Ryan turned 7, he was finally diagnosed with autism.

I have since learned that medical and educational professionals like to "ease" parents into a potential diagnosis.  They seem to think that is acceptable, and we parents appreciate the steps leading to a devastating reality.  NOT TRUE.  At least, in my case, I'd prefer to be told the worst case scenario, and then ease up if necessary.  Each diagnosis that Ryan endured broke my heart more and more until it was finally shattered with the diagnosis of autism.

So now it comes to me and a lump.  Each nurse or doctor initially told me not to worry.  However, when each heard my family history of "lumps", the demeanor changed.

My father has survived several types of skin cancer, including melanoma.  He has also survived lung cancer.  Twice.   The last time he was given 4 months to live.  That was 13 years ago, and he is alive and well.  I call him a walking miracle.

So out will come this lump.  I told my sons individually.  Each reacted differently.  Stu freaked.  Ryan and Nick accepted it quietly. Cam was on the phone, telling his friend all about it. They understand that, as of now, it's just a lump.  When it comes out, it will be sent to the lab, we'll find out if it is something more serious.

I am still not worried about me.  I am concerned about my sons and being to progress without guidance, so the focus this summer will be to give them opportunities to problem solve and be independent.  Of course, all parents strive to teach their children to be independent.  It will just take a little longer for my boys with autism.  With or without me.

No comments:

Post a Comment