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News › Autism - A Murky Business
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Personal Stories: Autism - A Murky Business
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Posted by Sylvia on Wednesday, November 19, 2003 (08:17:44)
written by Diane Bayer
Hello. My name is Diane Bayer and I am a Mom. I have two boys.
My youngest, Jacob, has Autism. I never thought I would be introducing myself someday in this way. There was a time when I could not bring myself to even allow that word to enter my consciousness as an explanation of what I was seeing in my child. It has been three years since my son's diagnosis and I am just beginning to enter the realm of acceptance. What a long and strange trip it has been!
Robert has asked me to write about our family's experience of loving a child who has Autism. Our paths crossed on the Internet when he read a post of mine, which was forwarded to him, about my personal reactions to his documentaries. These films touched me in such a profound and deep way that I had to express what I felt about them in words. I have viewed them all several times now and each and every time I have this emotional response. They are genuine and courageous and I can't get through them without a box of tissues nearby.
Our family's struggles, and feelings, and truths seem to be mirrored in this family's story. I wasn't just watching…I felt like I was "with" them and re-living some of the same experiences. Even Jack looks like a twin to my son, Jacob. It was truly cathartic for me to watch these films. I knew I was not alone and that is worth a lot.
Since my son's diagnosis I have been writing…a lot. I couldn't stop it if I tried. This is my way to deal with my pain. Everyone has ways of coping.
I think Robert uses his films to deal with what he has gone through, but also to give back. And that is what I wish to do now. I'm hoping to transform our emotional struggle into a gift for others. There is a great power in words to mend and to repair. Words help us to connect to others. Words empower us and they give us the strength to go on. Our experience is not unique.
Many children will be diagnosed with Autism, many more than had been in the past. Yet, parents and caregivers faced with the impact of Autism on their child's life and on the life of the family, may think that they are all alone. My primary gift to those dealing with similar struggles is to tell you through words…you are not alone.
Full Article
This will not be a column for telling you what to do or how to do it. It will not be a column for promoting one methodology over another. It will not be a roadmap. I can't do any of those things because all parents are different. All children are different. What helps one child may not help another. All I can offer is to share my experience and the emotional journey.
I just heard a story from a parent who told my husband that he traveled to five different states and obtained all sorts of different services. He then told my husband the secret of what he felt really helped his child the most….lots of love. I would agree but add that it takes more than love…it takes a lot of hard work. I have found too, over the years, that it isn't about finding THE methodology, or THE service, or THE school or THE professional to help you. I have found that nobody can give you all the answers you seek on a silver platter. Mind you, some might try…for a price…but it's usually just an illusion.
During my endless searches for THE answer (I am sorry…I have to interrupt my commentary and tell you all that my son has made paper wings and has taped them onto his back…I think he is preparing for take-off!)….I was really hoping that someone else would have my answers for me. I had this fantasy that the Autism Fairy would descend from the clouds and tell me exactly what to do to help my son. That didn't quite happen. I got tons of advice from all different sources…most of which conflicted with each other. It was like a minefield to sort it all out.
There is a risk and consequence to every thing you do and also for everything you do not do. I think if I have learned anything from this experience it has been to deal with ambiguity. You don't know. Nobody has the crystal ball to tell you how things will turn out. So you constantly have to take these flying leaps of faith hoping that it will all work out in the end.
We once waited for over two hours to see a geneticist to hear her pearls of wisdom. After having waited in five different waiting rooms with our very stressed out child, she had this to say: "Autism….is….a murky business." Waiting for hours…and this is what she had to say. Yet, with this simplistic statement, is a lot of truth. Autism is, indeed a murky business.
Good golly…we don't even know what this is yet. How many of you have gotten more than one diagnosis for your child? How many times have the professionals disagreed upon what was up with your child? How many of you had great delays even getting the initial diagnosis because nobody could agree? It is not a black and white affair…Autism is a whole lot of gray. And this ambiguity, and "murkiness" can drive a parent insane.
What I wish to do with this opportunity of sharing our experience, is to tell parents and caregivers that you that you can get through this without going insane. It is possible. I dare say it is possible for life to go on and for your family to find happiness as well.
Life isn't about the exclamation points, it is about all the stuff that happens in between. Through my writing I want to convey that Autism doesn't have to mean the end of the world. You can enjoy the process and the journey even when you have no idea what will happen next.
I suppose I need to get back to real life here. My husband is helping my son fly through the air with his "new" wings. One day, I remarked to one of my helpers that life is never boring when you have a child with Autism. My son, hearing me say this, promptly replied, "Thank you!" On that note I will leave you.
Click here to read another story form this amazing lady
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Posted by Sylvia on Wednesday, November 19, 2003 (08:17:44) (3729 reads)
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