Flo and Kay...Autistic Savants, Thoughts on Caregiving

Yesterday I watched a program I recorded called Flo & Kay: Twin Savants. Possibly you have seen it as well? I found myself moved throughout the film.

Flo and Kay Lyman are both Autistic and very close to one another. Very close. They have an interesting obsession with Dick Clark and are friends with him. Dick Clark met with the twins and sends them cards. I now have a very special place in my heart for Dick Clark. He could have blown them off but he took the time to communicate with two of his biggest fans on an ongoing basis.It was especially interesting for me to watch this since I was asked this question by an acquaintance a few weeks ago. He asked, "Maizie is autistic? What is her 'special skill'?" I sat there...staring at the guy in disbelief. He was relatively young so I would have thought he understood a bit more about Autism. Was I understanding him correctly? Was he assuming all Autistic people were savants? My pause was long and uncomfortable enough that he added, "You know....like counting cards or something." Argh. Rainman.

I took that opportunity to talk a bit about Autism and how incredible Maizie is. I have to believe that he was asking me the question with kind intentions. If not, I would never leave the house considering how often I get asked bizarre questions in regards to my daughter, Autism and even adoption (I will cover a frequently asked question in regards to adoption in another post soon).

The show Flo & Kay talks about the many misconceptions in regards to Autism and Savant abilities. It says that ten percent of people with Autism have savant characteristics. That is quite low and yet many people think that all Autistics are like the character in Rainman. I was very pleased to hear the show go into detail on the statistics and touch a bit on how Autism varies from person to person.

The program also discussed the stress on caregivers and the difficulties of finding ongoing care when the main caregiver passes on. A subject I don't like to think about.

Flo and Kay were raised by their mother. The mother felt so left out of her community, so alone and without help that she tried taking her life and the life of the twins. It was the twins older, neurotypical sister that stopped her when she found them all with their heads in the gas oven. Needless to say I was aghast hearing this. And yet, we still hear stories like this or much worse to this day. The twins said the mother promised she would never hurt them again after the older sister saved them.

Obviously I was moved. I could relate to their mother and felt such sadness for her. I had more support than she had and I still felt desperate...alone and beyond exhausted. Back in the 50's when the twins were little the supports were non existent. Children with disabilities were often hidden and looked at shamefully by others. I know when my mom was caring for my sister who had a stroke at six the supports were terrible. That was in the seventies. We have come a long long way. And yet, there is still a long way to go. A very long way.

We need to look out for caregivers during these difficult times and support them in any way we can. As caregivers, we need to ask others for help and be very specific with our requests. Friends and family can not read our minds. I would often try and hide just how difficult life was because I wanted to be the perfect mom. I still struggle with this. That got me nowhere but more tired and more alone. Sometimes it is difficult to ask for help.

I am lucky to have my sister Melissa. She was the one who brought my relentless depression to my attention, helped me make my appointment, encouraged me to try medication and went with me so she could communicate my situation. I was beyond words at that point. All I did was cry at that meeting. Sometimes we can't see a way out until someone guides us along.

I hope Flo & Kay's mother was able to see what charming women her daughters are. I hope that she died knowing she did a very good job raising the twins. Mothers often get the blame for everything and very little recognition for the hard work they are putting forth to care for their children. My life has been looking up over that last few years. I read many blogs where the families are in the early years of finding a diagnosis and caring for an Autistic child. Some are searching for a cure and some are moving on to the place of acceptance and pure joy for who their child is. It is a process and it takes time.

I do not believe there is a cure for Autism and I don't search for one anymore. I need my energy for living life and enjoying my time with Maizie, Joe and my friends. Looking back at my earlier years as a mom I can understand my exhaustion, frustration and fear but I do wish I would have spent less time worrying, fretting over the latest cause or potential cure. Instead, I would have spent more time just 'being' with Maizie, enjoying everything about her without trying to force her to change. It is easy to say that now. At the time I felt like I was living on an island, swimming against a sea of negativity...trying to reach my daughter. If I had been blogging back then and had the support network I have now...I think that would have helped me see more clearly.

Sometimes when I am trying to help Maizie develop skills and she is struggling with health issues I see life through a very thick filter of illness, disability and desperation. Every little thing in my vision becomes clouded, distorted and life feels desperate and fearful. It is hard to remove that filter from my eyes. And yet, it is necessary to remove it in order to let Maizie be Maizie and me be me. I am still working hard at peeling back that damn filter. The light is fantastic though when you let it through. Everything is dazlious!

Flo & Kay inspired me to write this post as did the many people who love them. Flo & Kay are truly dazlious!