I stopped my world yesterday. It was a simple thing. First, I started my day cooking a meal for my autistic son. Driving it to his apartment to the delight of his feasting eyes on homemade chicken tenders was so worth it. Shortly a new job coach arrived to Luke’s home. We are hoping to increase Luke’s structured employment or volunteer hours in the community. The meeting went well.
Tag Archives: parenting
My son Luke is preparing for his first day of work on his new job. Last week , I was asked by a new site devoted to stories about how the disability autism impacts a family. Feel free to go to this link and read my work published on another site. Elizabeth also has a disabled son living in the Seattle area:
It was 1999 and we lost track of our six year old autistic son Luke. Prior to this, our church service had just ended. Luke just began walking and our youngest son was two years old.
The church we attended at the time was meeting in an old building. My husband got Luke from Sunday School and I went to get our baby.
At some point, Luke wandered off and we went on a wild goose chase looking for him. I was panicked to say the least.
Everyone was leaving the church , except for a few concerned parishioners. It was the craziest feeling not knowing where our son disappeared to.
The church had an old attic that was used for sound checks. It was accessed by a pull out ladder. At some point it was shut, but we kept running around yelling, “Luke! Where are you?”It just did not make sense.
All of a sudden, I could hear a distant whimper. To say the least a mother knows her child’s sounds. I scurried to have someone open the drop down ladder and low and behold there was our sweet Luke sitting in the dark.
I had not thought of this event for quite some time until I was told recently of the little autistic boy who lost his life after wandering off from his family in PA. These stories are hard to fathom, and even more to swallow. Yet, we have to. We have to remember how vulnerable our cognitively challenged society can be especially our children. Searching for someone missing is a feeling I would not wish on anyone. Anytime a person vanishes-tragedy can be right around the corner.
I hope this story shows how easy life can change in a heartbeat. In this case, it was a quiet sound of a whimper from my precious son. It was just enough to help this mom find her beautiful little boy stuck in a dark, damp attic. My heart still pounds pondering this event.
Luke was held by me for many years until he learned to walk.
Where Are You? What Are You Doing?
You ever wish you could see into the internet and peek at your internet Word press friends in real life? I was just really thinking about you guys today. This summer has been going fast in some ways and slower in others. Since my spring vacation to Hawaii, we have not been anywhere. However, living in Seattle does make for many fun days in the summer time. Our weather has been phenomenal this year. In fact no rain for 40 days for you disbelievers out there that think it rains all the time in Seattle!
This summer has been spent in quiet contemplation at times, driving with one of my sons who wants to get his license (hence quiet contemplation keeps my nerves in check), gardening, and many other small projects that add up to more than 24 hours in a day. Heck, I am not complaining. It is my belief we were put on this earth to stay busy and productive. So I guess that is what I am doing. Yeah. The yeah is for my 16-year-old who says that about thirty million times a day.
For you gardener friends, my yard has brought me much joy this year. I actually am not really a green thumb, but I did take some time and worked very hard to get my yard in better shape. I wish I had a before photo to show you because you would not have believed the mess. These photos I am sharing show off some of my hard work, but there is so much more to do. How are all of you all doing and better yet what have some of you been up to?
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.