A Mother’s Emotional Challenges Dealing With Her Autistic Son

Having an adult son with autism has hard and complicating challenges.  My first time hearing Luke’s diagnosis in 1994 made me numb.  It did not seem real.

KIDS!

Growing up in Hawaii offered kids interesting opportunities like BIRDS on your head!

Blogging is still a very new way of expressing myself. Sharing and reaching out to others for affirmation or showing my unique way of looking at life seemed to bring an audience into my world. I am grateful for each of you. A couple of weeks ago I was nominated for The Beautiful Blogger Award ( http://scvincent.com/awards/ ) and asked to share seven things about myself. I thought I would confess some of my childhood mishaps. Now remember these were the early 70’s!!!! I hope it brings a smile to your face and you see a little of yourself in my answers. After all you were a kid once:
1. I thought I was a great singer at the age of eight in 1971. I sang to the same Donny Osmond album night after night. Mom told me I may have actually sang Puppy Love more than Donny Osmond and Paul Anka combined. It seemed Mom was not too impressed with my singing. It was soon after that I had to give up my musical career. I actually auditioned for the neighborhood band and was “promoted” to manager as the band said I hit a few too many sour notes.
2. I loved playing softball. One year while on the ALL STAR team, I hurt my knee and it was swelling pretty bad. There was some guy at the game who said he could “take the pain away” by hypnotizing me. I let him do that right there with the players around me watching. Before I knew it all the pain was gone. I pitched the game and never felt pain. Later I got home and my knee hurt like hell. My mother was not too impressed.
3. I have gone number one in the pool while I was growing up. I could not help it because I just wanted to keep swimming. Now that Michael Phelps confessed that he has done this, I felt it was OK to share. Mother would not have been too impressed so I did not tell her.
4. I studied best with my dog Rascal growing up. I still love being around animals. I played with him more than studying. Mom was not impressed.
5. I was baptised at the YMCA. It was not a real spiritual experience as I froze my butt off when I got out of that water and my tittys could be seen frozen to death! I wonder if I gave anyone a cheap thrill that day? My mother would not have been impressed.
6. I once spit out food right in front of my grandma while eating breakfast she made me. I was eating eggs with something in them when I said, “Gramma this is good, but what’s in these eggs?” She said in her Kentucky accent, “Child that is pig’s brains. They are good for you.” I proceeded to barf. Mom was not impressed.
7. I was once in a tornado. My daddy and I were going down a road when the weather proceeded to change rapidly. Our car was actually lifted off the road. It was clearly an outer body experience. I remember not even being scared. I was like cool looking at dad thinking come on car do that again! OMG was I nuts or what? I never told my mom this story until a couple of weeks ago. She finally seemed impressed. LOVE YOU MOM! I know you are reading this….

Redefining Mental Illness

When I was growing up, mental illness was shunned.  We did not talk about it in my household.  The first time I really heard much about mentally ill people was from my two aunts. They were nurses in a mental hospital for chronic patients in Kentucky.  As a young girl of 16, I was immediately drawn into the strangeness of this new world.  I went up to visit my aunts when they were working and I was able to actually walk the halls with the patients.  I was not scared, but what impressed me most about these sick folks was how they mostly kept to themselves. They talked to themselves and did not seem to notice the world around them.  One man did come up to me saying some jibberish that had to do with eatting Ronald Reagan’s liver for lunch and I said, “I hope it tasted good.”  I did not know what to say and as many of you know I do have a strange sense of humor.

When I became a Registered Nurse, I left the crazy world my aunts loved to concentrate most of my nursing in critical care or post operative surgery.  I thought this kind of nursing was a much safer world for me.  I guess I was fooled. However, the world of Mental Health never left my personal life.  In 1993, I welcomed  a beautiful baby boy named Luke.  He would be diagnosed with PDD-NOS or Pervasive developmental disorder not otherwise specified.  Later this was just noted as Autism.  My world as I knew it was shaken to its core.

You see a panel of experts in 1994 had completed a new revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) that would be used by the medical community to identify and diagnose children like mine with Autism.  They say 20% of the population has some form of mental illness.  I think it is higher, but what do I know.

This year a revised version of the DSM ( ONLY fifth revision since its creation in 1952) came out. Many folks in the medical community are up in arms about it.  Change is not easy.   My concern is more that we do not let the new DSM take away the much needed health care  for individuals who need it to function in everyday life.  Globally this book will be used to diagnose, but in America this book is hugely significant to the ordinary person because if a person is not diagnosed, one does not get the dollars from their health insurance.  This concerns me.  I think time will tell how all this plays out especially with Obamacare taking root in the next year or so. In general I applaud the mental health community for updating the book.  It needed to be done.

I also want to mention that I fear for the over diagnosing of individuals with mental illness.  A word of advice:  Do not take a pill for every whim and especially do not put a child on a pill to mask symptoms until you really understand what is going on.  Patience is needed .  Do not be in a rush.  Where the heck you going anyway?  It has taken many years of finding the right medication for Luke.  He is on two main meds right now and is functioning fairly well on them.  He is monitored very closely by doctors we have found in our community we trust in Seattle.

Luke and Linus enjoying some much needed rest time.